Medical History 6/12/14: Pancreatic Cancer: Full Whipple, Shands, Gainesville:
T3N0, MO, Stage 2A, 32 lymphs removed - clear margins
CA-19: 16 7/2014: 2 Infusions Gemzar, liver enzymes-blood count low-Dr decided not to do 3rd infusion,
did not tolerate well so QUIT CHEMO - changed diet to organic holistic
6/08/16: CA-19: 38 6/15/16: Internal Bleeding - Deland, FL Hosp. Endoscopy/Colonoscopy - could not find source
-stopped on it's own 7/11/16: Petscan local recurrence along surgical clip 1.9 cm, 4.1 FDG,
No ascites, no metastasis 7/21/16: Internal Bleeding - Orlando FL Hosp. EUS: cauterized vessel in lower stomach 9/06/16: SBRT Trilogy - 5 days 12/06/16: Petscan - NED 12/16/16: Endoscopy Ultrasound/Colonoscopy - stomach inflammation, esophageal varices
- Biopsy - NED 1/24/17: CA-19: 30 3/06/17: Petscan 2nd local recurrence along surgical clip 1.4 X 1 cm, 6.7 FDG
No ascites, no metastasis 3/13/17: CA-19: 21 4/18/17: CA-19: 69 3/21/17: Foundation One Genetics: KRAS & P53 4/28/17: Orlando consult Nanoknife - No 5/12/17: Waiting for Miami Consult 6/2/17: CT Scan Tumor 4.7 X 2.4 cm 6/6/17: CA-19: 128 6/15/17: Miami - No nanoknife-tumor too large & undefined 7/17/17: Louisville, KT - No nanoknife- tumor too large (over 4cm) & chemo required before & after 8/10/17: CA-19: 147 Quest 9/5/17: CT Scan Undefined tissue - 2X3 cm - reduced 10/6/17: Vascular Surgeon-no to portal vein surgery 11/17/17: Liver Surgeon-sees cancer invasion of portal vein 12/1/17: CA-19: 268 Quest 12/14/17: Petscan: SUV uptake 10 & 19 FDG, no ascites, no metastatis, nausea 1/05/18: CA-19: 98?-BS Results 1/29/18: CA-19: 461 Quest 2/26/18: CA-19: 493 Quest - 119 lbs 3/12/18: CT Scan - No Mass? 3/19/18: CA-19 128?-BS Results 3/19/18: Started Morphine 15/25 mcg Fentanyl 3/29/18: Started Hospice 3/31/18: Fentanyl 50 mcg/Morphine15 -3 times day 4/09/18: Fentanyl 75 mcg/Morphine15 -1-2 times day 4/15/18: Fentanyl 75 mcg/Morphine15 -1-3 times day 4/16/18: ASCITES
Fentanyl 100 mcg/Liq.Morph20 -1-2 times day 4/17/18: Liq.Morph20 -every 2 hours 4/18/18: Fentanyl 100 mcg/Methadone -3 times day
This journal was created to keep Jims friends and family updated on his progress as well
as others fighing pancreatic cancer, as we go thru this battle together. The most recent
posts are on the bottom as I decided to do it in story format. It is now about 124 pages long so best read on a laptop.
- his wife, best friend and life companion - Ann
Some of us inherit the creation of cancer in our bodies thru our genes. This means we have to work even harder to eat right and exercise
to help prevent cancer from appearing and to keep it from growing. I created this page because my boyfriend Jim (65) as of this writing
has a 2.0 cm adenocarcinoma tumor on the head of his pancreas and in his bile duct that
turned out to be cancerous and needed to be removed so that it does not grow further into his pancreas or
metastasize to other organs.
A stent was put in so his bile would flow but he is needing Whipple surgery soon to remove the tumor as of 6/9/14.
He will be having Whipple Surgery at Shands Hospital
in Gainesville 6/12/14 and we are asking for your prayers for his speedy recovery.
Jim just had a full Whipple done - his gallbladder removed, the head of his pancreas removed 50%,
bile duct repaired, duodenum removed and a small portion of his stomach and part of his small intestine
were removed and 32 lymph nodes for analysis to see if cancer had spread. He is Stage 2A, T3NO, MO.
They said that although there was no cancer in his surgery margins or lymph nodes,
it was recommended that he should undergo chemotherapy to kill any remaining cancer cells floating around.
His treatment was to begin on July 15th, 2014.
Jim rarely ever drank, doesn't smoke, exercises daily and is not overweight. In the last 5 years he has improved his diet but it needs to be even better now to help fight
this cancer he inherited from his grandfather possibly. I also have had to have fibroid tumors removed as well as my sisters as the creation of tumors
runs in our family. My mother lives with her brain tumor, my uncle died from a brain tumor so I have that to look forward to later in life.
I did a lot of research on what other people eat to help prevent cancer and tumors from occuring and spreading, so below
I have listed a new cancer prevention diet. After some research since Jim started Chemo on 7/15/14 I have decided not
to add anti-oxidant supplements to his diet as his type of chemo with Gemcetabine is oxidative so the anti-oxidants
would make his chemo less effective. I have also decided he should not take fish oils
or flax seed oils as he is already on a blood thinner called Lovenox.
We both agree that keeping the body alkaline is the first step towards fighting cancer so we bought a
ProPur Stainless Steel Water Purification
and set aside many bottles of this filtered
water to use daily in all our cooking. We got the water from it tested at our local pool place and it came out at 9ph.
We make our ice cubes with it as well as drinking it.
Chemo: After 2 rounds of chemo Jim had decided to Quit Chemo and hasn't had any since July 22nd, 2014. It made him very sick, nauseas, achey, weak, tired,
loss of appetite, slight fever, trouble sleeping and generally feeling awful all the time. He said it was killing his good cells along with the bad and destroying his immune system
, liver and kidney function.
So after doing much research he discovered the Gerson Therapy which was also recommended by a friend that had tried it for his tumors with success.
After polling people on the Whipple Warriors group he found many that chose not to do chemo at all after whipple surgery and some that had quit chemo. After
2 weeks of being off chemo he started to feel better and gradually found products at his local health food store that were recommended to go along with the
He also talked to a Doctor of Naturopathy Margo King from Debbies Health Foods in Deltona, FL that told him what digestive enzymes he could take to replace the prescription ones he was taking that did not seem to be
working. He also got a liver flush pill to take before starting his
Healing the Gerson Way: Defeating Cancer and Other Chronic Diseases
which is now flushing the toxins out of his liver. He started this on 8/1/14.
and so far he is feeling much better from just quitting the chemo and feels the new supplements are cleaning out all the bad stuff accumulated from doing chemo.
Will keep you posted as things progress and list what he is now taking here.
As of 8/22/14 Jim was able to start his juicing as he had to wait a month after chemo
to begin the process. In advance he bought a refrigerator just to hold all the organic fruits and vegetables.
He also got a Champion Juicer
and separate press that was recommended by the people from the Gerson Therapy clinic. Today he created his first 8 juices
- fresh sqeezed grapefruit juice for breakfast, carrot juice after eating steel cut oats for breakfast and then green juice before lunch.
Lunch is usually steamed fish and veggies such as red and white cabbage, onion, garlic and beets.
For dinner I made Hippocrates soup which is cubed vegetables: tomatoes, potatoes, celery, onions, leeks, fresh parsley leaves and certain allowed herbs such as anise seed, corriander,
sage, rosemary and thyme. He also managed to do 3
to flush the toxins out of his liver 3 times during the course of the day...this is an essential part
of the Gerson Therapy.
Yes, this is a whole lot more work than going to get a chemo infusion once a week. It takes all day to create 8 - 8 oz glasses of juice and to create
the freshly cooked meals from scratch...it certainly has created more work for both of us... but Jim feels so much better now following the Gerson Therapy that
he can now walk about a mile with me every day. He is still weak and needs my help and we stay home most of the time. His weight is still only 140 lbs but just a month ago during chemo it was 138 so gradually his health is improving.
Putting weight on is slow on the Gerson diet as it involves no wheat or dairy based products, the only protein Jim is allowed by his Naturopath is fish. The Gerson Therapy
is strictly vegetarian but because he had lost so much weight from surgery and chemo his Naturopath told him he could eat low fat fish.
Written 9/26/14: Good news: Jims CT Scan done on 9/2/14 came out clear so he no longer has to give himself Lovenox blood thinner shots...apparently the pulmonary
embolisms in his lungs are gone. We will be going to see his oncologist on 10/30/14. His blood work looks good except for a little low on B12 and folic acid so a few weeks ago he started
using a Vitamin B12 Patch
with folic acid patch behind his ear a few times a week. Today 9/26/14 he had his first taste of
Papaya Leaf Tea
made from the leaf
of the papaya tree. We found out about this online and have decided to try it...will let you know how it goes - so far no stomach aches or bad side effects.
I will post some of the links I found to this cancer remedy here later but you can easily google it yourself.
Jim has also cut down on the enemas to once a day in the evening - as recommended by his Naturopath which I am glad for. His diet is mostly steamed
and boiled vegetables and fish but because I feel he needs more protein I make him a small lean steak or chicken sometimes for variety.
He is still not feeling great but is glad he is no longer on chemo - on a scale of 1 thru 10 he is feeling about a 5 to 6 he says most of the time...his energy level
comes and goes and his weight stays at about 140 lbs...still too skinny for a guy 5'11". He does have a good appetite but this no fat, low carb diet does not put weight on you.
He recently bought a Small Trampoline
to get his blood circulating and keeps that in front of his lazyboy to use so it is in easy reach for daily exercise.
He sometimes also works out with weights and does his Exercise Bike
and we take 1 miles walks for about a couple of times a week now usually in the early
evenings when it is cool. He is no longer on any prescription medications at all and is able to drive himself around. Sometimes I have to remind him that it has only
been 3 and 1/2 months since his surgery and that he is doing much better than many people at 65. He just isn't back to his old self before surgery
when he used to be able to jog 2 miles a day and bench press 125 lbs 15 times...now he is up to bench pressing 90 lbs 8 times and walking a mile.
I would say his favorite somewhat off therapy food is a vegetarian omelette w.red potatoes and rye toast.
Update 10/16/2014: Good News: Jims CA19 score went from 17 to 12 which he attributes to the Papaya Leaf Tea, I have been making it
from 2-3 raw papaya leaves torn up and put into a saucepan w. 2 1/2 cups of water, cooked at 185 degrees for 25 minutes (do not boil it)
See Research by Dr Nam Dang then
strained into a mason jar w.lid which can be refrigerated. The tea comes out light brown and clear. It can keep for 3-4 days - if it gets cloudy throw it out.
Yes you can buy Papaya Leaf Tea
online as a dried tea or you can make it yourself if you live in Florida
and the tree can be found near you. I am starting to sprout some papaya seeds at Jims but also already have some mature trees growing at my moms and my house.
We tell everyone about this tea because if you live in Florida it is free and easy to make. In this picture on the right he is 3.5 months after his Whipple Surgery
and is 140 lbs...a long way from the 165 lbs he was before he got sick back in May 2014 but he is getting better every day and is happy for the choices he made about
how he wants to fight his particular type of cancer.
10/24/14 Eating Real Food: I would like to say that besides juicing a few times less per day that for the past month Jim is now eating
baked chicken w.potatoes, onions, carrots, celery or a crock pot of stew meat w.the same. I will make him sauteed vegetables over rice w.his fish or
on very rare occassions a small filet mignon w. vegetables. He does eat a few slices of a good quality Marble Rye bread each day as that is allowed w.the Gerson Therapy.
For his 66th B'day this month we decided to go to his favorite health food store and get a small gluten free, dairy free, low sugar chocolate cake and vanilla icecream.
We both feel less guilty eating it that way and it will last a long time now that he has been on such a low sugar diet for so long. It is hard to eat anything
that sweet when you haven't in a long time. Most of the sugar he gets
is natural from fresh fruits like peeled peaches or plums. Occassionally he will also have grapes, dried prunes or raisins for a snack. Of course before he eats a
regular meal he will take digestive enzymes such as
If you would like to see a spreadsheet of his entire diet and vitamin supplement regimen just ask by filling out the contact form.
He also switched to a new very high quality vegan protein shake called Sunwarrior Warrior Protein Shake
and I'm glad he is drinking that with a banana in it every day as I feel he needs the extra
protein and calories and it does make him feel better.
Hydrogen Peroxide 11/5/14: Started
Essential Oxygen Hydrogen Peroxide 3% Food Grade
protocol this morning, added two drops of HP to 4 oz glass of filtered water.
Best time to do this is first thing in the morning when body's cells are starving for water, more chance for any cancer cells to take in the oxygen and OD.
No food or water two hours prior and one hour after intake of HP. Will increase dosage to 4 drops per glass as my body adapts to it.
Oxygenates cells and cancer does not like oxygen, they die. Cancer Tutor on Benefits of Hydrogen Peroxide
has a good article among others on the internet.
Can take this protocol 3 times per day as prescribed. Will be continuing with everything else I do, this is just added insurance. I purchased 3% HP,
so I don't have to dilute it, just add drops to water. Since I am a shallow breather and wake at night not able to breathe, this might help my situation and keep
the cancer at bay. Cancer cells thrive in a oxygen deficient environment so I plan to kill them with oxygen plus everything else I do.
Exercise: About 2 months ago Jim bought a small trampoline as he had read that is good for getting your lymphs moving and blood circulating
so he jumps up and down on that everyday. He has been lifting free weights and is up to 90 lbs on the bench press about 8 times in a row....once or twice a week.
He is starting to do his version of situps but I think he pushes himself to hard and gets achey afterwards.
He bicycles on his stationary bike about 15 minutes every couple of days. Although this sounds like alot for someone after Whipple surgery he still has days
when he does not feel well - a little stomach pain...kind of yucky feeling. Those are the days he just rests and does no exercise.
Doctors: Jims blood pressure and heart rate is still too low so we went to see a cardiologist on 10/30/14 to see about maybe getting
his heart monitored especially at night when it gets really low. Yes he has been lectured about drinking more water and something with electrolytes but he has always been difficult when
it comes to drinking more water. Well that visit the doctor told Jim to have more salt in his diet so his Naturopath suggested he use 1/4 teaspoon per day
of Himalayan Salt
. So he just started doing that. Jim has decided to try that for a month and see if it helps his blood pressure.
Update 11/25/14: Jims next blood work will be December 8th so we shall see if he is improving. He just saw a urologist Friday the 21st and
so is now on Cipro and Flomax, first prescriptions since August. Those prescriptions caused him problems like fainting and dizziness so he learned
how to space them out and eat food more before taking them. We shall see if this works for his problems.
only juices once or twice a day now, has been eating more turkey with rice and vegetables lately, is scheduled to see a Vascular doctor and get a CT scan on
the 18th and possibly a Pet Scan. Still waiting for all the results from the most recent bloodwork. Unfortunately his weight is down to 138 lbs and he is feeling
weaker so he started back on
. He still gets dizzy from taking the Flomax at night so after getting up from laying down has to sit for awhile before getting up to walk. If he gets up too fast
he can get lightheaded enough to pass out.
Update 12/16/14: Jim has been feeling very tired and just ran out of B12 and so we went out and got something different - a Superior Source No Shot Vitamin B6/Vitamin B12/Folic Acid Nutritional Supplements, 100 Count with
B12, Folic Acid and B6 that is taken sublingually under the tongue. I feel the brand he got before because it did not have folic acid was not absorbed so he got no
benefit from it. My sister recently sent us an article about
Graviola 1300 mg
Graviola which comes from the PawPaw tree so we decided to order that supplement for him. Graviola had great reviews on Amazon similar to Papaya Leaf for fighting and preventing cancer.
So he is starting on these 2 new things today. Will let you know how it goes. Going for a Urology visit tommorrow so we can tell her the Cipro prescription is finished and the Flomax seems to
help somewhat but does cause dizziness. Good news is his CA-19 score is now even lower at 9.5 which he attributes to the fresh Papaya Leaf Tea.
Urologist says cut back on the coffee enemas as that could be what is causing his prostate to be irritated and causing the discomfort upon urination
that he never had before he started the coffee enemas. She switched him to Rapidflo as it doesn't have the dizziness side effect. He is feeling better from the 2nd day
on B12 but is concerned about being only 137 lbs now. I made him steak w.sauteed veggies for dinner today as he had to fast before his PetScan this morning
so was very hungry. We are still patiently waiting for the results of the CT Scan and Pet Scan from this week.
Update 1/01/15: New Year and Good News: We got the results of both scans in the mail and from what I can read there are no concerns.
So I have decided Jim needs to have a daily food diary so we can figure out why he still gets pancreatitis sometimes...
pain in his lower stomach and sometimes in his chest. Going back to see the oncologist to discuss the scans on the 8th.
Update 2/02/15: Jim still is not gaining weight - he stays at about 136-137 lbs even though he is able to eat regular meals he occassionally gets
pancreatic attacks which means pancreas pain - chest pain and weakness. The prostate pain still comes and goes too even though he is taking Flo-Max.
Although he takes plenty of vitamins the most he has energy to do is go to the grocery
store with me but holds onto the cart as he has felt faint there before. His blood pressure is still too low - sometimes down to 88/45 so I have to keep getting him to drink
gatorade as I feel it is caused by low sodium and not enough hydration. Our life mostly revolves around doctors visits to his various doctors and grocery shopping
and the occassional trip over to Daytona to see my mother. Next GP visit is Feb.12th and have to get approval from him for
appts to see a new vascular doctor and gastroenterologist. I'm glad the weather is still cool so no lawn mowing and weed wacking for me to do here yet.
Update 2/24/15: Jim has become more independent going grocery shopping on his own and cooking for himself. He still gets pancreatitis
and was having aching muscles and back but finally followed my advice and started taking magnesium. Seems that even though he was taking all kinds of vitamins
he wasn't getting enough of that particular electrolyte that we all need. So now he takes about 250 mg in the morning and the same later in the day.
I had used it myself before for aching muscles and leg cramps after a hard day of yard work and it worked for me. Magnesium is for nerves and muscles and helps
you to relax. He was so surprised by how much better he felt after taking it he wanted me to let everyone know about it on the Whipple Warriors website.
Update 3/22/15: We recently saw some ripe Loquats (also known as Japanese Plum) on the neighbors tree across the street and I looked up the health benefits of Loquat
and found that the seeds have laetrile in them which is great for fighting cancer. So now Jim takes 1 seed in the morning and 1 in the evening. He also enjoys the
easy availability of the delicious orange Loquat fruit...there are many trees in this area. I also found that the leaves can be made into a tea which has many cancer
fighting properties and is good for people with diabetes because it helps them overcome sugar cravings. Please do a search for more information
about the many health benefits of the Loquat seeds, leaves and fruit.
Jim is now adding green bell peppers, half a jalapeno pepper and chili powder to his Hippocrates soup to make it more alkaline and also because it is anti-inflammatory.
He added celery to the carrot and apple Gerson Therapy juicing. Celery has pigenin in it which is a cancer killer - reference Dr Fred Pescatore.
Update 4/19/15: Jims thyroid TSH is 5.59 so I decided the Thyroid Now which is an iodine supplement that is supposed to stimulate
the Thyroid gland to produce more Thyroid hormone didn't seem to be working so I asked his Dr to prescribe him Levothyrosine. I had just started on it myself
and it made me feel so much better so I am hoping it will help him too. It could be his thyroid is just not working as I am not blaming the product
he was taking. I am hoping this thyroid hormone will help improve his kidney and liver function and help his adrenal glands. Jim is still having pain in his muscles, joints and sort of an all over body aching.
The magnesium that seemed to help at first doesn't seem to be helping much anymore. His bloodwork looked good except for MCV/MCH being borderline high so he takes
Boost B12 Sublingual Vitamin w.B6, Biotin & Folic Acid
not just once a day but twice a day every other day. Twice a day every day is too much according to his previous bloodwork.
He is also taking more - Vitamin D3 5000 Iu
as his bloodwork showed it at 31 and could be higher. Before he was only taking 1000 IU of Vitamin D.
He takes 425 mg magnesium malate also to aid in the absorption of D. Somtimes he has
which is 225 mg magnesium citrate drink in the evenings to help him sleep and that does work - I take it too every other evening.
He is scheduled for his every 3 month CT Scan/Pet Scan the last week in April. He continues to eat 2 Loquat seeds each day for the laetrile in them and
drinks papaya tea each day as it reduces inflammation. His appetite is good and he now weighs 142 lbs - the Oncologist said he gained 4 lbs since December.
Update 4/27/15:Jim started taking
Curcumin Stop Pain Now
as it was recommended for his neck, shoulder and pain in his arms.
It is an anti-inflammatory so I am hoping it will also ease inflammation in his pancreas. I got some
V8 V-Fusion Pomegranate Blueberry Juice
there is also a light version that is lower in sugar and either one will help to clean out your arteries and prevent plaque buildup - since Jim does have artheriosclerosis. I drink it myself as I have high cholesterol which is caused by hypo-thyroid
and am hoping it will also help to unclog my arteries. Some things that help to clean out your arteries and prevent plaque build up are
100 Percent Pomegranate Juice
, Non-GMO Organic Cacao Powder
w.no sugar added that you can sprinkle on cereal, in coffee and shakes, avocado, brocolli, asparagus, certain types of nuts like almonds and walnuts for
their omega 3's, chia seeds, cinnamon, coconut oil and coffee - see
21 Foods that Unclog Your Arteries
Update 4/30/15:Our Anti-Cancer Recipes: Hippocrates Soup - this is the version from the Gerson Therapy but w. some additions:
Get a large dutch oven for cooking a large pot of soup that you can refrigerate and reheat. In it put fresh cubed red potatoes, celery, onions, garlic,
tomatoes, parsley, sage, rosemary and thyme (just like in the song) Jim asked me to add red pepper (anti-inflammatory) and himalayan sea salt
as well as halfed Brussels Sprouts and a minced Jalapeno. Boil on low until potatoes fall off fork.
Anns Anti-Cancer Everything Sautee': First set to boil Brown Rice - 1 cup to 2 cups of water seasoned w. red pepper, himalayan sea salt, parlsey, sage, rosemary,
thyme, and Curry Powder (has turmeric and curcumin which are both very anti-cancer). Then in a Large Skillet w.cover sautee in olive oil and coconut oil:
chopped celery, onions, garlic, eggplant, yellow squash, zuchini, bell pepper on low and add a can of stewed tomatoes.
You can also add already cooked chicken or turkey to this mixture for more protein or even mushrooms. Put the whole concoction over your rice.
Make sure the cook has a glass of merlot while cooking for it's anti-cancer proflavanol properties.
Update 9/7/2015: Jim is feeling much better these days - he is able to mow the lawn using a riding mower but makes sure to wear a big straw hat to keep the sun off.
He still says he aches all over but you wouldn't know it as he painted the outside of the front of his house this past month,
tiled a entire kitchen backsplash, tiled a bathroom floor, put styrofoam tiles over a popcorn ceiling in a garage bathroom, and is getting ready to paint 2 bathrooms.
He is able to go out fishing a few days a week with one of his neighbors in a little flatbottom skiff on the lake at his house.
It's great that he lives on a lake
so is able to rest after a couple hours of fishing. We don't venture far from home as he does need to take catnaps during the day. He is able to go out to
do light grocery shopping - as long as he gets to rest afterwards.
Considering the type of surgery he had a year and 3 months ago his doctors, relatives, friends and
neighbors feel he is progressing along just fine. Now if we could only convince him that he is improving. He does not feel like he did in the months before
this surgery and is still waiting to feel that well someday again. I think we are all just glad he is still alive and is able to lead a quality life. The muscle pain
is his greatest concern and we have tried many different types of nutrional supplements for that as mentioned previously...so far not one has been the majic bullet.
I think that giving his pancreas time to heal is going to be the only solution. Next oncologist visit will be 9/14/15 and ct scan to follow.
Update 9/15/2015:Oncologist says bloodwork looks ok but since he went from 145 lbs a month ago down to 143 and is feeling weaker she is going to test
his B12 and iron levels as he is showing to be macrocytic anemic again. Meaning poor absorption which is the reason for him loosing weight and feeling weak.
Update 11/18/2015: October 9th Jim had an endoscopy and they found 2 ulcers one was a bleeding
ulcer in his duodenum right above the area where it was sewn together after his whipple surgery. He had been told to take
omaprazole after his surgery but he chose not to because he read that it would reduce his absorption. Well that was a mistake
because he did not realize that his body after surgery would produce more acid so he really needed to take it. It is
possible that the ulcers were created by too much acid in his stomach. So now he is taking the omaprazole 40 mg eery
morning. He still has pain where the ulcers are so just started taking carafate. We are hoping that will help
reduce the pain. He was taking zantac in the afternoons previously and that seemed to help but he felt that he needed
something better so got a prescription for carafate. It is going to take some time before he will see some releif
from his new prescriptions. He also now takes his prescription for ZenPep enzymes instead of the over-the-counter
enzymes. It turns out they were not strong enough and he was not getting enough enzymes to digest his food.
He is still at 140 lbs and says he is feeling weaker but we are hoping these changes in his meds will help him
feel better and gain weight.
Update 12/9/2015: Jim had his 2nd endoscopy and the gastroenterologist said his ulcers were healing
and to keep on taking the Omaprazole. He has to take either Omaprazole or Pantoprazole 40 mg per day to keep the acid down
in his stomach as he does not have a pylori valve to control the amount of acid his body produces. Too much acid
creates ulcers and inflammation of his stomach. He had an MRI that same afternoon and the results show that
he does not have any sign of anything to be concerned with. He still has pancreatic pain that radiates to his back
but I am hoping that when the ulcers completely heal the pain will go away.
Update 2/1/2016: I have not written in quite some time because I have been so busy over the holidays.
I wish I could say Jim is improving but it basically seems as if he is at a stand still. He was too weak to
go to my mothers for Christmas although I did manage to get him to visit his sister the next day to exchange gifts.
His weight is pretty much the same 140 lbs. He says he feels weak and aches all over and sometimes itches all over.
He constantly says that he feels that his cancer is coming back but the MRI on Dec. 9th showed no sign of that. We went
all the way to Gainesville to talk to his surgeon and he assured Jim everything was fine on the MRI.
It could be the medicines he is taking are causing the itching.
He recently started on a new pancreatic enzyme called Creon that could be causing the itching.
He is less active now then he was a few months after the surgery. He does not go for walks around the block with me
anymore but he does do his stationary bike every other day.
We don't go anywhere or do anything just stay at home which is ok in the winter as Florida is the best place
to be when it's cold out. The cold bothers him more than it used to so he installed electric fireplaces throughout the house.
He put up faux brick paneling behind the 3 fireplaces and panelled a wall in the kitchen. A few months ago he retiled
the backspash in the kitchen. Sometimes he does go fishing
out on the lake here with one of the neighbors when he feels up to it.
At times just walking around walmart is difficult for him as he feels dizzy and weak.
I leave about once every 2 weeks to either visit my mother or go up to my house.
To me he seems grouchy a great deal of the time because he does not feel well so this makes being a caregiver rather tough.
Update 2/5/2016:Went to his GP yesterday to get a referral to a new Gastroenterologist.
Jim also told him he wanted to quit taking the omaprazole because it is keeping his body from absorbing nutrients.
He needed to take it while he was waiting for the ulcers to heal but the dr said they were pretty much healed so now he can
slowly start to come off of them and he wants to try a more holistic approach to reduce acid. So he is cutting down to 20 mg of
Omaprazole in the morning and then taking Ellagic Acid in the afternoons before a meal and DGL tablets after a meal.
We are going to see if this is a better substitue for the PPI's he has been taking. PPI's tend to take calcium from your bones
and are not meant to be taken for more than 2 weeks. He had been told he would need to take them the rest of
his life but he feels they are making his body weaker and causing malabsorption. His weight was down to 138 lbs
on this last visit. I am also going back and forth w.humana and the pharmacy trying to get the paperwork together
to send to Medpro so he can get help paying for his Creon stomach enzymes as they are very expensive.
Update 5/1/2016: Good news - Jim got help from Med Pro for his Creon - this was very important because
he was not taking enough of them for fear he would run out. They are so expensive that even though he has pharmacy coverage
he went into the Medicare donut hole after only a 2 month supply and the price went up to over $1000 per month. So now he can
finally relax and take as many as he needs instead of rationing them. He dropped down to 134 lbs about a month ago
so when we saw his new gastroenterologist at Shands in Gainesville he was told to make sure he ate 2200 calories
per day in order to gain weight. His CT scan came out clear so that was also good news. So now for the past 30 days
we have been keeping a spreadsheet of what he eats and how many calories and his weight. He is now up to 137 lbs. He never
realized he was not eating enough calories until we kept track so now he really tries to make sure he eats over 2200 calories
per day as that is the only way he is going to put weight back on. He doesn't feel that things have changed much but I can
see that he has more energy and wants to do things more. We still don't go anywhere very far from home as he gets
tired and needs to rest after eating.
Daily Pill intake: If you are a pancreatic cancer survivor you may find yourself having
to take about 20 plus pills a day. Here is his list: 36K Creon 2-3 per meal, 1 with snacks, 20 mg Omaprazole twice a day
to prevent ulcers, multi-vitamin, D3, Calcium plus Magnesium, Glutathione, Zinc, 81mg aspirin,
B12 sublingual, fish oil, pro-biotic, miralax, 2 - 1mg lorazepam to sleep, no painkillers at all even though he gets pain
from pancreatitis still every couple of days.
I am writing this to help people recovering from pancreatic cancer to see what
he is now able to tolerate eating two years out and also what we have found to be higher in calories and protein and low in sugar. Jims Diet to gain weight: Breakfast: 2 cups oatmeal w.banana 400 calories, Bagel w.butter 300 calories
or English Muffin, Boost Low Glucose protein shake 190 calories, Protein Bar 190 calories, about twice a week 3 strips of
turkey bacon and 2 eggs 275 calories, 5 pancakes 300 calories. Late Lunch/Early Dinner: Hippocrates Soup w.cabbage,
brussel sprouts, celery, potatoes, carrots - 2 bowls 300 calories, Rice 200 calories, baked potato w.butter 150 calories, green veggies 150 calories,
Protein shake: Whey powder, banana, strawberries, blueberries, 2 tablespoons of peanut butter 640 calories. At least
1 type of meat per day, pork, beef or chicken 250 calories. Chicken or Turkey Pot Pies 300 to 740 calories, 2 Grilled
cheese sandwiches 400 calories, half a sub 400 calories. He tries to get 2200 calories per day w.this basic diet. You don't
realize how important it is to keep track of calories to gain weight until you are underweight.
Update 6/12/2016 Saturday afternoon soon after eating Jim had really bad intestinal pain on the lower left
which faded by the time he woke up on Sunday. I told him to take Miralax Saturday night so that seemed to help the next day
but his stool was black and tarry so he was worried as normally it is not like that. I read that if blood pressure is low and heartrate high along w.intestinal pain
it could be an indication of internal bleeding from ulcers or stomach cancer. He is always worried about the cancer spreading.
It is not something that can be seen easily even w.mri's and ct scan. His recent CT Scan showed nothing new.
Well this morning his blood pressure was 93/73 and heartrate 80 which was kind of high but the top number got better after awhile.
He is just resting, he has been feeling weak and tired yesterday and this morning. Will be taking him to his GI dr at Shands on the 21st.
He just had bloodwork done so are waiting for the results of that. Will take his BP again when he wakes up from his nap.
Update 6/17/2016 Tuesday the 14th took Jim to Florida Hospital ER in Deland because he had
been having black tarry stools which means there is internal bleeding. He had intense stomach pain Saturday night after eating and then the next morning is when
they started. His stomach pain had subsided and we called the on call dr at Shands who told him to go to the ER.
He wanted to wait to see if it would go away and also to talk to his GP on Monday. He was feeling well enough to drive
all the way to Daytona and back to get his SUV that had been in the shop. Knowing we would be going to the ER in a few days
he decided to do a few things around the house so he would feel better about being gone. It helps him psychologically to
prepare for being gone even for a few days so there is less to take care of upon returning. He was feeling well enough to
walk into the ER on Tuesday and didn't take long for them to get him into a room. THe first day they did an endoscopy
after he fasted all day. He had a fever after that but it subsided after an hour of being wrapped up like a swami in warm blankets.
He was so hungry and practically inhaled their delicious potato soup, glucerna and pudding. Unfortunately the endoscopy showed
nothing so they told him he would need a colonscopy the next day and were able to schedule him in for noon. So as
I left after making him eat another bowl of soup. He was not looking forward to another day of not eating and going
to the bathroom all night. He was happy to announce the next morning he was all ready for his colonscopy and wanted it right away
as he was very hungry but had to wait until about 1pm to get it done. As we suspected they found nothing. His bloodwork
also showed his CA19 had gone from 13 up to 38 which meant that possibly some form of cancer was lurking. He lost so much
blood that his hemoglobin was at 86 when we got in on Tuesday but went back up to 98 by Wednesday so they said the bleeding
had stopped on it's own which was good news. Luckily we already had an appt w.his GI Dr at Shands for Monday the 20th
so that is the next step to see what he says to do. I had all his medical records from the hospital faxed up there so they will be there
before we arrive. We already know he will have to be scheduled for scans and procedures next but
have to wait for the GI Dr to order them, Humana to approve them and appts to be made.
Update: 6/20/2016 Just got back from Shands. Dr said according to his blood work that yes
his cancer is back. They are going to schedule another endoscopy but this time with ultrasound (EUS) finally that
I asked to have done 3 months ago. On the same day he will also get another colonscopy to try to go up into his
small intestine this time to see if they can see anything.
Unfortunately even if they find something there is nothing they can do
as the dr says they cannot remove any more of his pancreas.
The dr also said he had precancerous lesions back 2 years ago when they removed half of his pancreas
so they may have become cancerous. He also said the cancer they removed was only 7 mm away from
the celiac axis nerves and so the cancer may have gotten into those nerves and also his blood stream.
The celiac axis controls peristalsis - they may deaden those nerves when they go in to
relieve his digestive pain but it will also affect peristalsis.
Dr says he was lucky to make it 2 years as his type of cancer only has a 5% chance to live 5 years - Jim asked how long
he had but dr can only say - I don't know - they truly are only able to give percentages that are well published.
If he has internal bleeding again I have to rush him to the ER (black tarry stools)
and hope the bleeding stops by itself like it did this last time because
otherwise he could bleed to death.
There is no way to stop internal bleeding from the area it is in.
We were up at 4:30am to make this 8 am appt so Jim is resting now then going to eat his hippocrates soup w.rice and chicken
and sleep some more I am sure.
He wants to go to the health food store tomorrow to see if there is something he can take to enrich his blood
as his blood platelets are very low and hemoglobin and hematocrit and he is quite anemic. He bought Hemaplex.
I asked my mother what to do in case he bleeds again and she said drink ice water to make blood clot better
-she says according to his blood work he may not make it another year. This is a very Sad day but I had suspected
this is what the dr would say. I was hoping though they could do more surgery but he made it clear that is not the case.
Update: 6/29/2016 Jim was scheduled to get an endoscopy ultrasound (EUS) and small intestine scope
August 16th. His GP says that's too long to wait and ordered him a Pet Scan (got it approved for Monday July 11th, 2016)
- didn't understand why the GI Dr didn't order one since his CA-19 went from 13 to 38 within 3 months time.
Jim is now calling Orlando Hosp to see if they can do the procedures he needs sooner.
Jim says he is not going down without a fight so is doing hydrogen peroxide 3% 12 drops in an 8 oz glass of distilled water 3 times a day on an empty stomach
-it kills cancer cells because it makes your body more alkaline and oxygenates your blood,
4 - 1 oz glasses of papaya tea per day, lemon in all the water he drinks -
those are the 3 cancer cures he has settled on so far.
He just went for a new blood work this am so we shall see if this is working by next week.
Jim has read lots of holistic cancer cure books over the past 2 years and after many different things
he tried he feels these are the 3 that are most effective. The whole idea is to raise your blood ph to
9 to kill cancer-most people are too acidic around 5 ph. It also helps to oxygenate the blood as cancer
cannot live in a well oxygenated environment. He also contact Orlandos Florida Hospital and found GI drs there that can
do the EUS (endoscopy ultrasound) sooner. They want to do that first then do the other procedure that looks up into
his small bowel. This means he is going to have to change GI Drs., see the new one in Orlando and then get him to write
an order for an EUS there. Phew - changing DR's takes time - have to find one and then get approval from Humana
to make that change and get a new appt. I feel that this will only make it take longer before he can get the procedures
done but he wants to make this change to a different hospital so - it shall be done. At least Orlando is a little closer
than Gainesville to us.
Update: 7/07/2016 After many phone calls back and forth to the Orlando Florida Hospital and
the one in Ormond Jim found out that the procedures he needs can't be done any sooner so he is going to stick with Shands
August 16th visit to get an Endoscopy Ultrasound and Small Instestine procedure both the same day.
If he had tried to change GI doctors he would of had to see the new one and then reschedule the procedures -
I told him this but he had to hear it from them. In the meantime he has been reading some new books we ordered, such as
What Your Doctor Won't Tell You by Jane Heimlich
which was suggested by his friend TJ who has been trying to get him to take more Vitamin C as he firmly believes in it
and takes 6000 mg per day himself. Jim upped his dose and is now taking 1000 mgs a day, 2000 mg per day is the max they say
you can take orally. TJ says you could possibly get an IV of Vitamin C in higher doses as mentioned in Jane Heimlichs book
thru a professional medical practioner that specializes in Chelation Therapy.
I found an MD nearby that does Chelation Therapy that he might try later.
Supposedly the body flushes out what it does not need. He has yet to take more than 1000 mg's per day.
We just found out his CA-19 (Cancer Antigen) score went from 38 June 8th up to 39.6 July 1st, 2016...
that was over only a 3 week period
of him adding lemon to his water and doing the food grade hydrogen peroxide in distilled water so perhaps
we are expecting things to improve too soon. After reading what other Whipple Warrior scores are to me his seems
to be quite low in comparison.
He also just ordered Zeolite Enhanced - a few drops of it in water each day has worked wonders according to the reviews.
He still drinks 3-4 shot glasses a day of his homemade
papaya tea, puts lemon in his drinking water, and hydrogen peroxide food grade in distilled water 2-3 times a day on an empty
stomach. He started off with the 3% kind and is now using the 35% kind. He has not been feeling well most days, skipped
going to the neighbors bbq for the 4th and wakes up aching all over. He has been spending a great deal of time getting
things done to his '81' vette that he has had for over 25 years. After getting everything mechanically fixed on it
he is now getting a stereo installed and novelty horn today.
Update: 7/21/2016 Jim finally got the results of his Petscan on Tuesday...a week after it was done
and we had to drive to his GPs office to pick it up. I don't understand why his GP did not call but I kind of do understand
after we saw that he had a 1.6 cm tumor on his pancreas in the same place where the surgery was done. It was SUVmax 4.07
which means there is a good chance it is malignant (cancerous). He was very upset with this result and asked why his GP
did not call him as soon as he got the report. He finally did call us back later that day and apologized but truly there
is nothing he can do. It just would of been nice to know as soon as he got the report. He told Jim to call his surgeon
up at Shands and luckily was able to get an appointment for this coming Tuesday the 26th. His GP faxed the report to
his surgeon after we asked him to because
even though we had faxed it to his GI dr up at Shands-his office refused to fax it to his surgeon - how ridiculous.
Jim went and got a copy of the scan on disk to take to the surgeon. He is in panic mode now because he knows that adenocarcinoma
when it returns grows back with a vengeance. I feel that everything he has done up until this point has kept it at bay
and kept it from growing faster. We are upset that his surgeon did not order an endoscopy ultrasound back in Dec of 2015
when we requested it as maybe then he could of seen this sooner. We are also upset his new GI Dr at Shands did not order
an EUS (endoscopy ultrasound) 3 months ago when we first visited him even though we requested it...
instead he ordered a CT scan which showed nothing. He also did not order a Petscan - it was the GP that finally ordered
it after he had internal bleeding 3 weeks prior and an elevated CA-19 score. I had read that inflammation can cause a raised score
so this may not be an indicator of cancer but of inflammation.
A CT Scan is not as detailed as a Petscan which is what he should of gotten 3 months ago. So we shall see what the surgeon
says on Tuesday - hopefully it is operable as that would be best to just cut it out. If not then Jim will have to continue to
do his natural remedies and maybe add IV Vitamin C Chelation Therapy to his regiman. I am trying to find out if
this is something he can get thru his Oncologist as Nutrition Therapy but I called and they said no. What I am worried about is that the
tumor may be too close or touching his celiac axis (a nerve that controls peristalsis) which if cut upon can render him
unable to use his bowels to eliminate waste so he would be looking at getting an ileostomy or colostomy. The cancer
they removed 2 years ago was only .07mm away from his celiac axis. I mentioned this
possibility and he refuses to think of living that way but people do survive colon cancer in that manner.
Needless to say he is very depressed and I am too so I decided to take a break and go up to my house to do yard work
to get my mind off of it for awhile.
I asked him if I could ask his GP to put him on Zoloft or the equivalent for depression and anxiety as he is not handling
this news well...yelling at me as he is taking his frustration out on me
...at least he finally agreed to it. His weight has dropped to 130 lbs and even though
he is trying to eat more he just does not have an appetite and nothing gets absorbed anyways it seems.
Update: Friday 7/22/2016Had to rush Jim to the ER at Orlando Florida Hospital Thursday night around 10 pm
and I didn't get home until 2 am. He had internal bleeding again and I stayed as long as I could but
it takes hours to get results from blood tests so I went home. I came back Friday the next day and stayed until 10 pm.
According to the blood tests they did every 4 hours the bleeding stopped. They had not allowed him to eat for 24 hours so
he was starving - only getting IV saline solution. Finally the GI dr showed up around 9 pm and said he could eat again so
I went to the cafeteria and got him something easy to digest like stirfry vegetables w.rice
and the nurse gave him an egg salad sandwich and pudding. Hopefully tomorrow
they will feed him better now that he can eat again. They can't do much except monitor him over the weekend so I'm going
to catch up on my sleep, shopping, yardwork and housework before having to go back again.
He will be seeing some new GI drs Monday to talk to them about scheduling him for an Endoscopy Ultrasound and Double
Balloon Enteroscopy to check his small intestine.
Update: Saturday 7/23/2016 Jim said he had internal bleeding again this Saturday morning
and so they are back to checking his blood every 4 hours again to see if it improves at all.
He got to have a real breakfast, lunch and dinner today and probably will on Sunday. He says he doesn't feel
any pain but I have a feeling he doesn't realize there is painkiller in his IV. I told him eat plenty this weekend
cause I know they will probably make him start fasting on Monday to get ready for his procedures.
Update: Monday 7/25/2016 Jim is still in Orlando Florida Hospital and had an endoscopy Sunday
and they cauterized a leaky vein in the bottom of his stomach, it is not the same as the bleeding ulcers
he had previously, it means the vein wall is weak but we don't know why
- they feel this was the cause of his internal bleeding. We are still waiting for his blood work to improve
after this procedure.
Then the next day on Monday around 2 pm he had an Endoscopy Ultrasound, they could not see the 1.6 cm tumor
that was found in the Petscan from 7/11/16 but they did find he had Ascites in his Peritoneum, Fluid build up. He was not
allowed to eat since 7 pm Saturday and just had to drink contrast for his CT scan.
They will be draining the fluid out of his peritoneum sometime Tuesday.
Tonight around 8 pm they did another CT scan so they can compare all the pictures from the 7/11/16 Petscan, new CT Scan
and todays Ultrasound on Tuesday. He was hungry as a bear Monday night and all they would give him is clear liquids so
he told the nurses call the doctor and ask if he could drink Boost as he is not getting any nutrition thru his IV
as it is just saline solution. I was home by then so not sure if they ever gave him permission to drink it.
Am hoping he gets to have real food Tuesday.
We are guessing he will have a Double Balloon Enteroscopy sometime this week to look in his small intestine
as that is what they had suggested previously.
That is where they go in from the bottom up and deep into the small bowel as possibly that is where the tumor is.
Update: Tuesday 7/26/2016 Doctor never replied to his plea for real food last night, orders are
he is still to be on clear liquids and still waiting to find out if they are going to drain the ascites from his abdomen.
He is upset they did not even look at the Petscan he had done 7/11/16 when they did the Endoscopy Ultrasound on Monday
so he kept calling the nurse to give the Petscan disk (which they had already copied when he arrived) to the Dr
that did the EUS. So still waiting for them to compare the EUS to the Petscan and the new CT scan they did last night
- this takes time but Jim is impatient. He is starving and wants to eat real food. It is hard to sit and wait and wait.
They won't even give him permission to have a multi-vitamin. He is only allowed to drink clear broth, clear juice or
jello...no real food since Saturday night at 7 pm.
Jim has been sitting around all morning - still on only clear liquid diet...
1:30 pm and they finally are taking him to drain the fluid from his peritoneum...
He just got back around 2:30 pm and said they drained out 1 litre and suggested later he have a drain
put in so it could be drained regularly because that fluid can hurt your organs if it builds up.
He also says he feels better because he is not so bloated any more from all that fluid but does not know why
his other doctors never ever mentioned the possibility of
ascites developing to him.
They also let him have meatloaf and potatoes for dinner - finally he gets to eat.
They are still looking at his scans to determine what to do next. Just taking one day at a time
and being happy for little accomplishments.
Update: Thursday 7/28/2016
Jim is depressed, we are waiting for the results of his ascites fluid test to come in on Friday to find out if there
are any cancer cells in it.
They told him his tumor is inoperable because it is too near a vein.
They can only remove part of it so recommend chemo instead.
He has to setup an appt w.their oncologist to get that there.
Yesterday after we got out of the hospital he went to Debbies health foods and paid Margo the Naturopath $50
for a consultation and he bought $150 worth of supplements
w.instructions on what to take and when.
She also told him to buy organic beef, chicken and potatoes so that is what he ate last night.
He will continue drinking a carrot and greens juice each day and whey protein w.fruit and
is allowed to eat oatmeal, eggs and Ezekiel bread for breakfast.
He said he would try this for 1 month and if his CA-19 score does not
go down he will do chemo or may try chelation therapy. I have to setup an appt w.his GP today as he is the one that
does the blood tests. In the meantime he is sleeping well still
but still had pancreatic pain last night.
Thank you to everyone that visited him and sent him cards and prayers.
Update: Friday 7/29/2016 Even though Jim said he would go fishing w.Ron yesterday
in the 100 degree heat, he decided he just did not feel well enough yet to do that. I think his mind wants to do
things his body cannot. Maybe in the future they will invent a boat that can float over the water in
air conditioned quiet comfort so as not to disturb the fish.
Jim wants everyone to know he blames this 2nd bout of cancer from coming back because of anti-biotics he was told
to take by his previous GI Dr about 6 months ago who said he had H.Pylori when he didn't. We have textual proof of that
according to tests done after his endoscopy back in December.
He has repeated this to all the drs he comes across and of course they just roll their eyes.
He firmly believes that those anti-biotics hurt his immune system
because right after he took them he lost 10 lbs and his health deteriorated. His Naturopath agrees, it sounds
feasible...at least it gives him a dr to blame. Jim had his organic chicken and potato for dinner yesterday
and took his new nutritional supplements but is still his old grouchy self. I am looking forward to him
feeling better but not sure that will change his personality much. My sister suggested he get BRI Nutrition Ashwagandha - 90 Count - 1000mg Pure Ashwagandha Root Powder - 2 Veggie Capsules Per Serving
to help w.anxiety and depression and I am waiting for him to take it to see if it makes him feel better.
He still has not tried it yet - I tried it but couldn't really tell any difference.
Update: Sunday 7/31/2016 Jim slept late the last 2 days which was good for him as he has
a hard time sleeping in the hospital as they took his blood every 4 to 6 hours. We had to show the boat today which
is very hot & wearing for him but glad he was able to go w.
me this time as we found some issues that needed fixing. We went home right afterwards and I cooked him
an organic hamburger
w.Ezekiel bread and vegetable soup of potatoes, celery, brussell sprouts and carrots. He also juices every day using
organic carrots, kale, celery and beets - all these organic foods were advised by his Naturopath.
The good news is that as I was looking thru all his blood work from when he was in the Orlando Hospital
I found a CA-19 score of 19.6 July 23rd, 2016 while he was at Orlando Florida Hospital so that was much improved
since we were in the Deland Florida Hospital a month ago and it was 38 to 39. I just wish he was not feeling so weak even though
he has been taking a very good multi-vitamin and many other immune building supplements for the past 4 days that
his Naturopath told him would help kill cancer. I am not listing them here as some are her own
supplements for sale only at her store. He says he can start doing chemo at any time but said
he would give 30 days to his Naturopaths remedy first. I know it takes time
but it is hard to wait and hope that these natural things will work. He bicycled 30 minutes today and is starting to bounce
on his trampoline just a little - just hope he doesn't shake anything loose like that vein healing in his stomach that they just
cauterized July 23rd, 2016 to stop the internal bleeding. We were able to get a verbal reply about his ascites test
on Friday from someone at his GP's office saying that they found no cancer in the fluid that went for testing at the hospital
...impossible to get results from a hospital on a Friday afternoon. So until we get an actual print out from his GP about it
on Monday we are going to hold back on being happy about this news.
Update: Wednesday 8/3/2016
Well we saw Jims original Whipple surgeon at Shands in Gainesville on Tuesday at 11 am as a 2nd opinion
and he said what I expected - that the tumor was inoperable.
He said if "Jim did nothing at all he would live only 4 to 6 months" - mostly because of weight loss as he is
down to 130 lbs.
He is not absorbing what he is eating. He suggested Jim try cyberknife radiation therapy (SBRT) to radiate the tumor.
So after we got home we researched that and today he found out that SBRT is available locally at Florida Hospital Deland Cancer Institute so he
rushed over there w.all his medical records and numbers for all his doctors so they can get everything the radiologist
needs to evaluate the situation. They already have him on file as we were just at that hospital a month ago
for his internal bleeding but they were unable to find the cause of it there. It was not until we went to Orlando
Florida Hospital a month later they found out he had a vein bleeding in the bottom of his stomach.
I am glad he decided on going back to our local Florida Hospital in Deland as it is less stressful not to have to drive
so far. Then he will get an appt to see this new radiologist for a consultation. I have read alot about SBRT (Sterotactic Body Radiation Therapy)
online and feel that it will help him as long as it does not injure other organs in front of the pancreas.
Knowing he can do something about it has gotten him out of the depression he was feeling yesterday. The Shands dr said
he knew of people that had that done and lived another 2 years.
Update: Thursday 8/4/2016
Well we went to Jims new radiation oncologist Wednesday the 7th at 11 am and he explained to Jim that if there were cancer cells
in his ascites fluid that he would not remove the tumor with radiation because it would mean the cancer had spread.
He said Jim would have to do chemo which he refuses to do because the last time he tried it - it made him very sick
and that is when he weighed 145 lbs. He was so sick back then that after only 2 infusions he could not walk and
when he tried to go for the 3rd infusion they would not give it to him because his BP and blood count was so low.
Now he is down to 127 lbs so he feels his body cannot take it. We are waiting for
the results of the ascites test from Orlando hospital because when they did the test they made a mistake and only tested
for infection and not cancer cells. He did not show infection. They did admit they made a mistake after Jim spent an
hour on the phone trying to track down who was responsible for the mistake. (the mistake was found by the nurse at Shands
who pointed out the test results were for the wrong type of test)
So we are waiting for the results which will
probably not be getting until Monday or Tuesday. It is very strange that when we called the Orlando Florida Hospital
lab they said they had thrown away his fluids and then later in the day another lady called and said they still had some left they could test so
that he would not have to come back down to do it again. We were relieved to hear that but it was strange that one person
said his fluids were thrown out after 3 days and another person said they found them. Makes me wonder if they are just
trying to cover themselves and we will get erroneous results. Regardless, if the results show cancer cells then we
are going to another hospital outside the Florida Hospital system to find another radiologist that will radiate
that tumor as he feels that is the best and fastest solution. They will probably do a new ascites test too.
I missed my moms 83rd B'day yesterday so am going over to Daytona today while Jim makes lots of phone calls.
Jim is in a panic because time is ticking away and the surgeon at Shands said he only had 4 to 6 months left to live
if they did not radiate that tumor to kill it.
Update: Monday 8/8/2016 The results of the 2nd ascites test finally got faxed from Orlando Florida
Hospital to Jims radiologist in Deland...they were inconclusive because they waited too long to test the fluid.
So now the radiologist calls and tells Jim this at about 2 pm that he needs to order an ultrasound
for him to see if he still has ascites fluid and draw some out for testing if he does...
this means waiting for approval for the new ultrasound from Humana. So more waiting for approval and then appointment,
probably at Florida Hospital Deland as that is closest. Jim is very upset as time for him is ticking away and
the tumor on his pancreas may be growing. I sure hope these immune boosting supplements he is taking are helping his body
keep this cancer in check. So just sitting and waiting for phone calls from doctors as usual. He does not feel
well enough to go out fishing and really is too worn down from the stress of all this to do anything but read and watch tv.
He called The Center for Natural & Integrative Medicine south of Orlando to find out if it is the kind of place
he might like to go if he is unable to get the targeted radiation. After calling around
and talking to a few of these IV Chelation places he has decided this is the best one so I printed a map to it for him.
So he is all prepared for Plan B. Plan C is doing nothing.
Update: Tuesday 8/9/2016 Well the Center for Interventional Endscopy at Deland Hospital
finally called and gave Jim an appointment to have an ultrasound in the outpatient part of the Hospital
on Friday the 12th at 9 am. Finally he got his appointment after much worrying these last few days. He is not very good
at waiting as I'm sure anyone that had been told they have a limited lifespan would be the same way unless they were much
older than 68. He has actually outlived many of his friends and some of mine who were much younger but that is
no consolation. I appreciate my mom and neighbors listening to him go on incessantly about how he got screwed over
by a certain hospital, whose name I won't mention here, on his ascites test. I fully expect he will have no fluid
at all this Friday to even test and I'm going to try to go in with him to look at the screen if they will let me...
(as if he were a pregnant relative getting an ultrasound) and make sure he is not pregnant.
I told him not to worry it is not going to hurt having that
jelly rubbed on your belly and a cold paddle scanner rolled around on it.
Update: Friday 8/12/2016 I did get to go in to watch the screen while
Jim was having his ultrasound and saw a demonic face briefly flash across the screen....I want to assure everyone
that it is not my kid - but it might explain his personality these last few years. (Just joking - for those of
you who have not seen some of the ultrasounds pregnant women post online)
Just got back from Jims 9 am ultrasound at 11 am
and he is happily eating his oatmeal w.fruit as he decided not to eat anything since midnight. They didn't tell
him he had to fast but he decided to so they would get clearer results. The good news is there was NO FLUID,
so this means NO CANCER CELLS to find in his non-existant fluid. So we walked across the street to his radiologist
office and made an appt to see him Tuesday the 16th at 11 am. I thought they could immediately schedule the radation
but first he has to talk to the radiologist and they have to set him up for a simulation before he can get the
Of course this all has to be approved by Humana first so the radiologist office has to send the request to his GP first.
I even asked if we could walk back across the street and get the ultrasound results and walk them back to them but they said
that report would not get done until Monday probably...so more waiting for paperwork to go back and forth.
I asked them while we were there - "how long after radiation do you do a scan to see if it worked" and they said
3 months. Sheesh - that's a long time to wait for results - Jim said he may get that Vitamin C Chelation Therapy
right afterwards rather than waiting for the scan...we shall see.
I said Jim - "we should celebrate the small triumphs" as it will be months before we see any results from all this
but he refuses to do that until he gets his actual radiation appt...Sigh.
It will be a long 3 months waiting for a scan again. Oh well I'm gonna have a pizza and beer anyways.
Update: Tuesday 8/16/2016 Finally got to see the radiation dr at 11 today and he said
yes Jim was qualifed to radiation - so he signed on the dotted line releasing them from any responsibility for
side effects such as the common ones like tiredness, nauseau, vomiting, diahrea, constipation, burning sensation,
gastrtitis and the formation of ulcers, and the unlikely possibility of
life threatening ones like perforation of intestine or stomach which require emergency surgery. Hard to believe
this is all done on an outpatient basis. 5 treatments 5 days in a row starting on Monday next week.
The liver, kidneys, stomach, spinal column will
be getting small doses of radiation even with this targeted SBRT kind. There are short term and long term side effects,
some that can show up to 90 days later. So tomorrow on Wednesday at 1:30 he will be going in for a CT scan and simulation
so he can be setup on the computer for the actual radiation the following week. The dr is also going to see if
Humana will approve another Petscan since the last one was done July 11th. We would really like to see if the
tumor as grown. I also found out they will do the Petscan right there and match it up with tomorrows CT scan
to get clearer image. He told Jim this would prolong his life for up to 18 months if it is able to stop the tumor
from growing or even shrink it. There is no guarantee that it will not spread at this point. It is a relief he
is finally getting this done. We are keeping track of his calories again to prove to the dr that he is eating enough
Update: Thursday 8/18/2016 We saw Jims GP at 2:30 today although I feel it was a waste of time
but he is supposed to see his GP after being in the hospital. There is really nothing he can do at this point
as he said the radiologist will be doing any bloodwork needed. His last bloodwork was at Orlando Hospital July 27th
and everything was reading very low. I was hoping for him to get more bloodwork done by the 27th of this month
so we could see if he has improved since then. We mostly wanted his GP to push thru the approval
by Humana of another Petscan that his radiologist is wanting to be done on his own equipment. The problem is the last
Petscan was less than 30 days ago on 7/11 so it's very hard to get approved for another one so soon. Typically
you can only get them once every 6 months or after being in the hospital. So more waiting to see if this gets done
or if the radiologist will go ahead with the 5 days of radiation using the 7/11 Petscan and CT scan that he just did
yesterday. Jim has his radiation markings and tatooes and they did the simulation on him so we thought he would
be getting radiation this coming Monday. He is having lower intestinal pain lately and has anxiety worrying about this
tumor growing on his pancreas so we are anxious to get it radiated. His GP did try to quell his fears of the 4 to 6 months
that he has left by saying most doctors underestimate on purpose so that when you live longer you feel better. He says it's
better than telling someone too long of an amount of time and then having them not last as long. You can picture me rolling
my eyes and letting out a big sigh.
Update: Friday 8/19/2016 Radiation office called this morning and said he did get approved for
a new Petscan on Monday the 22nd at 11:30 am so we are so happy about that...as soon as that is done then
he can get his radiation.
Update: Tuesday 8/23/2016 We got tired of waiting to hear from the radiologists office that
did the Petscan yesterday so called him and he called back and said -
"the lymph nodes that showed up as enlarged before are back to normal", the "tumor appears smaller" but we aren't able
to open the cd for the previous 7/11/16 Petscan to compare them so will get back to us on it. So far sounds
like good news - maybe this new Immune Support Extreme Nutrional Supplement by Margo King is working to shrink the tumor as that
is what we were told it would do if he gave it 45 days.
You can bet Jim will continue to take it, he has been taking 6 to 8 pills a day with meals since 7/27/16
when he got out of the Orlando Hospital. A few days after getting out of the hospital on Monday August 1st his Naturopath
from Debbies Health Foods in Deland gave him a new organic diet regimen and new supplements to take so he has been following her directions explicitely
because he knows his life depends on it. He doesn't forget to take things like he used to and is really sticking
to an all organic diet. Since he is set on not doing chemo and sticking with all natural alternatives he is
getting a whole lot more serious about it since this new reoccurence. He does not mind targeted SBRT Radiation to
kill the cancer but he refuses to do chemo.
Update: Thursday 8/25/2016 I had to go up to my house Tuesday to do yard work and just
got home Thursday morning. Jim and I drove to the hospital to pickup the Petscan report and CD
that was done on Monday the 22nd. I didn't see any tumor size on the report so had to go back in and
ask if they could add an addendum to have that included. They said yes but later in the day we were told
the Dr has to request that...Jim was not happy about having to wait for that.
He wants to know if the tumor as compared to the 7/11 Petscan done 6 weeks ago has shrunk or gotten bigger.
Went back home and opened up the CD to see if we could see the tumor but you couldn't see much on this
new Petscan and it isn't even in color like the previous one. The problem they are having is the previous Petscan was done
at Twin Lakes in Ormond and they use a different type of software
so it was not compatible with this new Petscan software so they could not compare
the images...that pissed Jim and I both off.
The good news on the report is that his lymph nodes have decreased to
a more normal size and the area where the tumor was seems to be a bit smaller according to the report.,,
they call it inflammation along the surgical line - not a tumor so he needs to see the Dr to have
this new report clarified. If there is no tumor and it is just inflammation then
he feels he should not have radiation because radiation can cause bad side effects to his other organs
and it could also cause cancer to spread. Jim is thinking that just watchful waiting for a month to
see if it decreases even more -
he truly believes it is the new Immune Support Extreme Nutrional Supplement and organic diet that has made
this improvement. I think it is lots of praying by me and everyone else. It could also be that
the AVT in his stomach for a month that was finally cauterized caused all this inflammation.
So now more waiting for an appt to find out what the Dr thinks. Sigh.
Update: Friday 8/26/2016 Dr called 8:30 this morning and told Jim that what he sees
on this new Petscan report is still
an inflammed pancreatic lesion along the suture line (surgical clips area) and he still
says it needs to be radiated so he told Jim to come in this morning
to pickup a blood test order. We need to make sure his hemoglobin and platelets aren't
as low as they were when he checked out of Orlando Hospital back on July 27th.
So we went to the radiologists office in Deland to pick that up and went to the closest
Quest labs in Deland to have his blood drawn...then as we were there
the radiologists office called again and scheduled Jim for radiation starting Monday at 2:40 pm.
It was kind of confusing because one girl said it was for radiation and another for another simulation - so we shall see.
So then we went to Debbies Health Food in Orange City and got more of these Extreme
Immune Support Supplements because he was out. He is going to continue
taking them even during his radiation because he feels they are working. Some of the ingredients reduce inflammation
and some fight cancer.
Then finally just got home - luckily I had a cup of coffee cause didn't have time
for breakfast - just a protein bar while on the road.
Phew - long morning... 1:30 pm gotta make lunch - I'm starvin. Jim went all morning w.out eating so
he could do a fasting blood test and would not eat until we got home. It's tough being around someone that has
no appetite and can go without eating for so long - I make sure to carry protein bars just in case I find myself
sitting in a drs office all morning and thru lunch.
Update: Saturday 8/27/2016 Read When Breath Becomes Air
last night, Jim ordered it online after he saw a story about the doctor that wrote it on TV. A real tear jerker
but very enlightening, about a Dr that was diagnosed w.cancer at only 36 years old when he was working on his residency
as a neurosurgeon. I highly recommend it for anyone wanting to learn about what someone w.cancer goes thru
and how it affects their life and those around them. Today Jim is relaxing, reading and watching the news as usual.
He has his 2 bowls of oatmeal w.fruit in the morning, the only bread he will eat now is Ezekiel sprouted grains bread, no
more bagels or english muffins. I got him to eat baked snapper yesterday that his friend
Kevin caught at Ponce Inlet. He will only eat baked now - I was pan frying his organic chicken and potatoes in a litte
coconut oil but now he prefers baked.
I make a steamed vegetables of peeled potatoes, celery, carrots, brussel sprouts and purple cabbage, no seasoning at all - very bland but
per his instructions as it is easier on his digestion. He is very limited in what he will eat now, only organic baked or steamed.
Once this month he allowed himself a hamburger and potato salad when we went out to eat w.his sister and her husband.
I had read that the SBRT radiation reduces the pain as it kills the tumor on the pancreas may deaden some nerve endings
so hopefully he will get some relief from the constant pancreatitis. He is starting to get nausea now everyday
which he never really had before and thinks it's the tumor working on him. I think it could be the new
supplements he's taking.
Update: Monday 8/29/2016 Going to Jims radiology appointment at 2:30 today...
I called and finally got a straight answer - it is only for a simulation using the new petscan and new ct scan.
More later after we get back.
They moved the dot on his chest about an inch further down but the markers on the sides were the same.
Just got home at 5 pm...they scheduled Jim for radiation at 2 pm Tuesday - full dose each day for 4 days in a row
not graduated like we were told originally...his blood work has improved since 8/27 a month ago but red blood cell count, platelets
hemoglobin and hematocrit still below range...
so we shall see how he feels after tomorrow as he may change his mind about driving the next day.
He is determined to drive himself in his vette which I can't drive - stubborn old coot. Will be a long week.
Well 10 pm he finally agreed to let me drive tomorrow as he plans on taking a half a valium to make it thru
this 1st radiation day. It will keep him from getting the shakes because it is so cold there. They put a
restrictor band across his chest to keep his breathing shallower so the tumor doesn't move much while breathing.
It is interesting how they bracket the tumor on the computer screen and then radiate that area in pulses in between breaths.
You can watch the Trilogy SBRT Gating System at work
Update: Tuesday 8/30/2016 Radiation Day 1 Jim only ate oatmeal w.fruit this morning and nothing for lunch
as he didn't want food to get in the way of his radiation. Yesterday he ate lunch and had gastritis while laying there.
He took a compazine for nausea before we left the house today for his 1st radiation appointment at 2 pm.
I drove the suv but he was still full of anxiety and forgot to bring his lorazepam - guess I should of
remembered to do that since typically I am the one that has to remember his digestive enzymes.
He got done at 3 pm and said he felt fine so we went to the Deland Organic Market on the way home
and got him some purple cabbage and celery and then had to go to Publix for the brussel sprouts, chicken, and nectarines.
Made him his usual organic steamed vegetables and baked chicken and so far no pain or nauseau. He is still taking
the Extreme Immune Support Supplements everytime he eats to help his body kill the cancer. Doctor
told him that radiation actually puts your immune system into higher gear as well. Will be going for treatment
No.2 same time at 2 pm Wednesday. Was trying to get him to find some gluten free low sodium crackers he would like
in the organic aisle in Publix but he didn't want to take the time to look. Crackers are supposed to help w.nauseau.
He is reading and watching Fox News same as usual. So glad the day went smoothly, time will tell.
Update: Thursday 9/01/2016 Radiation Day 3 -
Jims radiation at 2 pm Wednesday went fine, he takes his nauseau medication before we leave to go there
and so far has had no nauseau at all afterwards. He prefers to eat the same steamed vegetables each day
with either chicken or beef baked as it is easier on his stomach. Still eating his oatmeal and fruit every morning
and a home made high calorie protein shake afterwards to tied him over until after his radiation is done.
He is down to 130 lbs so trying to get as many calories in him as he can handle
- he actually added a boiled egg this morning, that may not seem like much but for him it is a big accomplishment to
get him to add anything extra to his diet. He doesn't have much of an appetite and still gets lower abdomen pain
later in the afternoon. Side effects from radiation can show up anywhere from 1 week to 3 months afterwards.
Update: Friday 9/02/2016 Radiation Day 4 -
Jims radiation at 11 am Friday went fine, he forgot to take his nauseau medication but didn't get nausea.
Lunch was Hamburger w.Ezekiel bread and steamed vegetables, protein shake later in the afternoon.
Sleeps alot which is to be expected after radiation.
One more treatment on Tuesday afternoon then he's done. Dr. finally found out that his tumor was 1.9 cm on last petscan
so he was bummed out to hear that as he feels the nutrional supplements he was taking did nothing.
We knew it was somewhere between 1.6 and 2.0 cm...it is not an exact science when it comes to
Petscans - results can be varied depending on the lab they are done in, amount of flourescent glucose injected and amount of time after
that before the scan is done. Next time Jim is going to make sure they follow the exact same procedure at the same lab
so we can compare the results better. Dr said next Petscan will be in 3 months to see how he's doing as it takes time for the radiation
to take effect and shrink the tumor.
Update: Saturday 9/03/2016
Went to Daytona by myself today to show the boat - Jim just didn't feel up to it.
Great weather when I got there - cool and breezy but got real rainy later when they showed up.
Driving over there gives me a chance to visit my mother and brother afterwards.
Jim did manage to make himself a shake while I was gone but was happy to have me cook dinner.
Update: Monday 9/05/2016 Jim is anxious to get his radiation done on Tuesday...
he's hoping he can talk to the Dr about the pain in his small intestine as it also shows up on the Petscan
as "right colonic uptake of FDG and the majority of right colonic and distal ileum loops are
decompressed, they appear mildly thickened. Correlate clinically for patient signs and symptoms of an
inflammatory enterocolitis." So there is something there causing pain that is no where near his pancreas.
Update: Tuesday Radiation Day 5 - 9/06/2016
Last radiation appointment went smoothly, they gave Jim a certificate saying he did it - how cute!
Doctor took the time to talk to us afterwards and said his Petscan didn't really show
anything to be concerned with - to just come back in a month and if anything bothered him to call.
Went and had a hamburger w.Jims sister Terri and her husband Marty to celebrate getting the radiation over with.
Ahhhh...so good not to have to cook today. And while we were gone his neighbor Ron even towed the canoe out of the muck and weeds
that my brother had turned the canoe over and sunk the day before - Great Day!
I told Anthony to bring Ron a case of beer for that one. So glad I won't have to listen to Jim going on and on about
his canoe again today.
Jim is doing his green and carrot juice now and has been doing coffee enemas to keep on following the Gerson therapy.
He still refuses to do chemo so to him this is his preventive maintenance to flush all the toxins out of his liver and
So glad this day is over - Phew. Now if I could just talk him into taking a vacation to some place cool
for a change of scenery. I keep trying to talk him into driving up into the mountains like the foothills
of Dahlonega, Georgia cause they have caverns, gold mines and casinos up there about an 7 hour drive north.
He says he still does not have enough energy to drive anywhere but at least I can get him to think about it.
Update: Thursday - Beer Day 9/08/2016 Anthony found out my fav beer was on sale at
Publix and we got Rons his fav too. As for the canoe - I didnt know you were supposed to sit in the middle
of it so I didn't know to tell him that so he sat on the small end and that probably had something to do
w.the nose of it sticking up and it flippin over. I am not a canoe person so you will not see me out on that lake
as I know there are snakes and gators out there, flesh eating bacteria and brain eating ameboes. I used to
water ski and go crabbin in Floridas lakes and rivers but not any more. Jim once asked if I wanted to go canoeing
but I know I would end up doing all the paddling and he had flipped a canoe once so forget that idea.
Next time I will send Anthony out in the blow up kayak. Jim did all his breakfast, Gerson juicing stuff
and is happily reading a book I ordered that I was very
surprised he wanted to read about a Dr that had a near death experience and went to heaven. It is one of two books
I ordered on the subject that you see posted here. He has always told me he didn't believe that anything happened
after we die so hopefully this will change his mind on that subject. I figured he would be more open to a drs
opinion as it is more analytical. My favorite was the one by the neurosurgeon.
Update: Sunday - 9/11/2016 - Thursday 9/15/16 Back from Bunnell, no drs appts this week, just running errands.
Jim was watching his usual Fox news and reading when I got back. He was grumbly when I left cause he doesn't
like having to wait 3 months for a Petscan.
Wow Jim bought himself some boiled shrimp at Publix - he hasn't done that in years. Guess he is tired of organic
chicken and beef. They told him it was from Maine so as long as it's from the Atlantic he will eat it.
Beautiful sunny day so got some weed pulling done-I mowed out back before I left but I noticed nothing else
got mowed while I was gone...hmmmm. He is still not convinced about the soul going to heaven or eternal life
after reading both books so I need to find some more for him to read. At least he did manage to read the neurosurgeons
book completely, the other one was just too religious so he never finished it. He has plenty of old family bibles
on the shelves but I don't think he has opened one in years.
Jim sleeps alot-sometimes wakes up earlier than me and I wake up to find him asleep in the lazyboy...
now he's asleep in the bed while I'm in the bedroom on my laptop. As long as the TV's not on too loud I can be in the
same room with him...the floor fan muffles the sound of the TV. The radiation I think is what is making him so tired
although he keeps saying it's the cancer.
I had to run to the store by myself yesterday and today as he said he was just too weak and tired to do anything.
Just short trips to the store wear him out. Lawn is still not mowed so if it quits raining and drys out I may mow it.
Update: Friday - 9/16/2016 Well that's what I get for complaining about the lawn
not being mowed - Jim said he just can't do it so I had to and I did the whole area out by the lake too
and weed wacked - Phew. Glad that's done. He just has been feeling weaker and he says in more pain now
and weaker than before he had the radiation. Mom says it takes 10 days for it to wear off and it's been exactly
10 days since his last radiation on September 6th, boy I sure hope he gets to feelin better soon. He was talking
about goin to the hospital again and I asked him which one - I would prefer Florida Hospital in Deland
cause they have all his paperwork and his radiologist and GP is across the street but now he says
he wants to try someplace new like Fish Memorial. He thinks he is gonna have internal bleeding again cause he just
doesn't feel well, checked his temperature and BP and it is normal. I said drink some Gatorade your
electrolytes are probably too low but he refuses. The only reason he doesn't want to go back to
Deland Florida Hospital is because they did not go far enough w.the endoscopy to find the source of the bleeding last time
so that is why we ended up in Orlando Florida Hospital the 2nd time and they did find it and cauterize it...but he does
not want to go back there to Orlando either. I told him you know the whole time you were there you complained
they would not let you eat because of all those procedures so you had better eat enough now so if you do have to go
you get some calories in you ahead of time. So he had his usual oatmeal w.blueberries and coconut oil,
boiled eggs, high protein shake, chicken and baked potato, carrot juice
and ezekiel bread. I think reminding him of that lousy hospital food got his mind off that idea.
Update: Thursday - 9/22/2016
Been too busy to write, thank you everyone so very much for the cards, my sister was visiting from SC that I hadn't seen in years
so I had to go over to my moms in Daytona to help her and my brother out w.fixing moms trailer. So glad my younger siblings
finally took it upon themselves to do something. Wish I could say Jim was getting better but he's not, he feels weaker
and sleeps quite a bit still. All prayers are deeply appreciated. Soonest he can go for his Petscan is after Dec. 6th so we have
no way of knowing if the radiation worked until then. He gets dizzy and has to sit down, said he got dizzy yesterday
walking across the parking lot when he went to Debbies Health Food by himself so I told him no more
going anywhere by himself. He read about Wheat Grass being used at the Hippocrates Institute in Miami so we ordered him some
sprouting trays so he is going to start sprouting that and sunflower and pea seeds and using them in his shakes.
Now I just have to look for some open shelving on rollers as he plans on doing this in the kitchen.
Update: Saturday - 9/24/2016
Finally got Jim to walk down the block and back yesterday...
I read that cachexia (muscle wasting) caused by cancer is because the person gets too weak
to get up and do anything and so they lose muscle. It is also because with cancer even
though the body is starving from malabsorption it does not synthesize protein the same way
as it does normally. Increasing calorie intake makes little difference
if you do not get up and move around enough. Muscle wasting also leads to a weaker lung diaphragm
so that is why most people w.cancer die from pneumonia first before the cancer gets them.
I explained this to Jim to get him up out of bed. Laying down too much weakens the lung muscles.
So he has decided he is going to try to walk every day. I told him this is why they make you do breathing
exercises at the hospital and he still has the breathing devices but says they get full of bacteria so refuses to use it now
even though he has 2 of them - hoo boy. So you will see him walking more.
He had me order sprout starter kits from amazon and now I have to return them because he found out
that wheat grass sprouts cause photosensitivity so now he has decided not to grow sprouts for juicing.
Wheat grass sprouts are somewhat toxic.
I am actually glad about that because we would of had to grow them on top of
the refrigerator..more work..more mess...can't grow them outside as it is too hot.
Probably eating a few each day would of been ok but not juicing lbs of them.
I said what about the sunflower and pea sprouts well now he doesn't want to grow any of what he ordered all because
the wheat grass is toxic. Wheat grass juice is what they serve at the Hippocrates Institute in Miami along w.sunflower and pea
sprouts in their juices.
So now he is sticking to his organic carrot juice and organic coffee enema Gerson Therapy as he cannot find any bad press
on carrot juice...until he gets inspired to do something else.
He no longer drinks the papaya tea because he feels it thins his blood too much and is worried about having internal
bleeding again. He may go back to the Budwig Therapy of cottage cheese and flax seed oil but is worried about flax seed
oil also thinning his blood too much. Am looking forward to going to his GP on Thursday the 29th so he can get an order for bloodwork
so we can see if it has improved at all as it was all very low before radiation.
Update: Sunday - 9/25/2016 Jim woke up before me Saturday and decided we needed
to go for a walk even before I had my coffee! Guess I won't get to sleep late anymore or may need to walk first
while it's cool and then have coffee - Groan. He must of been feeling energetic as he made buckwheat pancakes and then
had his usual oatmeal but after the walk he is back to sleep. He drinks 2 to 3 - 8 oz glasses of carrot juice each day
so I am doing lots of carrot shaving. It takes 5 organic carrots to make one glass of juice. We shall see how he
feels this evening as he is not feeling very well this afternoon. I think he should just stick to walking once a day
in the evening until he feels better. His back, shoulders and arms are aching and sometimes his hip when he walks too much.
He can't stand for very long and that 1/2 mile walk I can tell wears him out
- he has to get back home to sit back down. He won't do yardwork anymore or even water the plants.
He refuses to use a walker with a seat and will not hold onto a shopping cart-
just throws his stuff in it then goes back to the car cause he can't stand in line. Won't use the walmart cart again
cause he can walk but gets tired and sometimes dizzy walking around the store.
I already have a scooter hover round type chair Jim can use and
ramp to haul it that goes on the hitch on the RV but he refuses to use one yet. Just like my mom - refuses to use
an electric cart even if they are right there in the front of the store. She forces herself to walk holding onto
a shopping cart or using a cane even though she gets out of breath. Her reasoning is that she needs the exercise but
it's hard to see her struggling. Jim did use a walmart cart when he got gout years ago.
Maybe he needs something sportier than a hoverround - like a little red scooter...but scooters are harder on your back and
arms because they make you lean forward to grab the handles. When your upper body is weak and aching it's better to use
a hoverround type electric wheelchair.
Maybe next time if I see a scooter at the Halifax Thrift store I can get Jim to look at it. Sigh.
He was too weak to walk Sat night and Sun morning so he managed to walk this evening but had pancreatitis.
He tried eating avocado again and got instant pancreatitis
so much for that idea...was hoping that last time he ate it months ago it was something else but even though he loved avocadoes
before his operation he can't tolerate them anymore.
Update: Friday - 9/30/2016 Went to Jims GP Thursday and he filled out a bloodwork form to test for
everything we asked for (CA-19, iron, calcium, thyroid) and the usual tests but told him not to get it done till next week.
We need to find out if his platelets are back up especially and how thin his blood is. BP was kinda low 98/56-55 but he did
not feel dizzy. Amazingly Jim told the Doctor he was feeling fine except for pancreatitis in the afternoons.
He always seems to feel better at the doctors - I'm the only one that seems to hear him say he doesn't.
Maybe all this carrot juicing is working. He also weighed in at 132 lbs so that means our scale is 2 lbs light so that was
real good news. I read you can't get below 30% of your before surgery bodyweight which for him would be 165 lbs
so he needs to stay well above 116 - I told him that is only 16 lbs away from where he is now so he needs to really
push himself to eat more. He is eating organic brown rice now so that adds more calories than just the steamed vegetables.
He can't eat anything high in fat calories like organic peanut butter unless it's mixed in a shake
- if he eats it plain he gets instant pancreatitis. It's hard to find things that he will eat
since everything has to be low salt, low sugar, no flour, no fat and organic.
We walk every day now in the evenings...I think the radiation treatments are finally wearing off but the pancreatitis
is still there every late afternoon early evening.
I gotta have my coffee and do too much stuff first thing in the morning so no morning walking - I get enough exercise
just doin yardwork lately. I just read the book Life After Life
and am still trying to convince him the soul is eternal. He did
run across a more scientific article on Quantum Mechanics of the Brain and Consciousness that he found even more convincing which also says
the conscious is eternal, so I think he finally agrees with it.
Update: Sunday - 10/02/2016 Jim has been sleeping a lot in the mornings - he gets up early and eats
his oatmeal and blueberries and even made buckwheat pancakes this morning but then goes back to bed and sleeps on and off
until afternon then has a protein shake and boiled eggs. Main meal isn't till after 2 pm.
He was again too tired to go shopping and had no desire to go anywhere.
He didn't get to walk yesterday afternoon because of all the rain so will see if he wants to today.
I have been following a guy about his age on
that was diagnosed in 2013 and is celebrating another year of holy days so that gives me some hope.
Roberts cancer was actually inoperable and required chemo to shrink it first
-then Whipple March 2014 (close to the same time Jim had his). He was in much worse shape and still is as it
has spread even after surgery and with lots of chemo.
As of October 12th it will be 2 years and 4 months since Jims operation and it has not spread (metastisized)
so I would like to think the holistic diet, papaya leaf tea and carrot juice works better than Chemo.
Update: Sunday - 10/09/2016 Jim is feeling very sick today, weak and tired - went back to bed...
I think the stress of dealing with the hurricane has taken it's toll. We were very lucky the windows didn't break
as all we had was tape on them. Just lost some roof tiles and already cleaned up the yard debris.
My moms trailer also didn't have any damage which she attributes to lots of praying.
Update: Tuesday - 10/11/2016 Jim went for a walk and came home feeling dizzy while I
was cooking lunch. 2 pm he had no appetite and now has a 100 degree fever. I now use a mercury thermometer
because so many digital thermometers just don't work right. BP is normal 104/78 Heartrate 64. Drs
nurse told him to take tylenol, monitor his temp and if it gets any higher he needs to go to the emergency room.
He also had a problem last night where he doesn't recall scratching himself and he had a bleeding spot
on the top of his hand. He said it quit bleeding so he wasn't worried about it not clotting fast enough.
He was supposed to go get his blood work done this week but hasn't yet. I had him drink icewater and gatorade
but he just won't eat. Finally got him to eat his lunch around 4 pm - he says if his temp goes down he's not going to the
hospital...we shall see as it is now 6 pm. 7 pm Jims temp went back down and he says he's feeling better - amazing what
drinking enough water and eating can do. Big Sigh. If it is not dehydration it could mean an infection which means
he would be given anti-biotics which he does not want to get because he believes it destroys the immune system.
He wants his body to fight infection on it's own and has read that a fever of 102 or less actually kills cancer cells.
I told the dr I would try to get him to go to the hospital but he did not want to get out from under the covers
...we shall see how things go tonight. Just getting him to take 1 - 500 mg tylenol to help lower his temperature he put up such a fuss...
he refused to take another one. Well his temp went back up to 102 so he decided to go to the hospital around
8 pm - feeling really bad he called his sister along the way to tell her he loved her...he said he felt like he was dying
and was ready to go because he was tired of feeling sick.
By the time we got there his temp dropped back down to 101 but he was still feeling very bad....
they put him in a room and did the usual bloodwork, urine test, ekg, xray and found nothing wrong, although
his platelets are still low at 110.
He told the nurses he just wanted to make it to his 68th Birthday on October 21st.
Gave him 2 litres of saline and his temp was back to normal so it must of been dehydration. So we got home
around 1 am. He asked to have himself weighed before leaving and their digital scale said 137 lbs.
On our digital scale he is 130 which is the same as the old style scale at his GP's office. Strange.
Update: Wednesday - 10/12/2016 This morning 8 am he has normal temp, slept late and
I am making him drink measured icewater to make sure he gets his minimum requirement of 8 - 8 ounces
of water per day. Got it in his special insulated sippy mug from the hospital. He had his oatmeal and Ezekiel bread
and was able to feed his cats this morning then went back to sleep. I am sitting in the bedroom working to keep an
eye on him - usually I sit in the livingroom as it is hard to work with the TV that he has on FOX News continuously.
Yup I wear a noise blocking headset occassionally until it makes my ears ache. Glad the weather is getting cooler and
breezier. Jim finally woke back up at 2:30 pm and I am trying to get him to eat his lunch of organic chicken, brown rice
and steamed vegetables. Cut up the chicken even though he doesn't like that...he is so weak I feel
he eats better if it is already cut. Hell I would spoon feed him if I had to just to get him to eat.
So relieved he is finally eating. Big Sigh. Wow what a difference drinking
enough water makes! He actually went out for a walk. I hope his problem was just dehydration
- I think he finally finally gets the picture
now that I am putting water in that measuring mug and making him drink 8 oz at a time - 4 times today. It was like a
Helen Keller moment. It took him all day to drink that - so now I think he realizes he is just not hydrated enough.
Before I trusted him to do it on his own - not any more.
Update: Saturday - 10/15/2016 Jim is slowing down on drinking his specially measured
icewater...he did drink a protein shake but did not manage to get down the 16 oz of water I put in his cup this
morning and slept until 2:30 pm. It is overcast and rainy out although the morning was nice enough for me
to do weedwacking out back and invoicing before that - gotta make a living.
I had to remind him after he woke up that he needs to finish drinking that one
16 oz mug of icewater. So it is apparent he has been neglecting to drink enough fluids which would explain
him gradually becoming dehydrated. It takes months to catch up on something like that and it is a battle
each day to get him to drink enough water. He refuses to drink any gatorade or any other type of flavored
drink that might help him. He is more worried about his sick cat than he is about himself. Another big sigh.
Couldn't get him to go out for a walk yesterday. It's a good thing he takes Vitamin D because he sure isn't getting
enough sunshine.Still won't eat lunch and it's 5:30 and I've asked him twice...he just has no appetite again.
My psychic sister predicted he wouldn't make it to Christmas and I am beginning to believe her. 6 pm and he is finally
going to eat his one plate of food for the day. His daily diet is quite bland but easy to digest:
2 Bowls of Oatmeal w.blueberries (650), 2 boiled eggs (200), protein shake (550), 2 slices of bread (160),
12 oz.carrot juice (150), Chicken w.brown rice and steamed veggies (600),
a total of 2300 calories per day just to get him to maintain his weight. Now to get him outside for some
fresh air and sunshine...even if it is near to sunset. Missions accomplished, fed, watered and walked.
Update: Sunday - 10/16/2016 The little tangerine tree I planted about a year
ago just had some early tangerines - most got blown off because of the hurricane but I was able to salvage one
and said - see you didn't even think you would live long enough to see this tree bare fruit...
so he agreed to have some of his own tangerine from his very own tree - hurray for little miracles and
plant food spikes. It's been 5 days since he was last in the hospital, gotta take one
day at a time, one step at a time, after all the rain yesterday the air was fresh and earthy smelling on our walk yesterday.
Jim is like a horse that is barn sour - kinda hard to get him outta the barn and he wants to trot right back to it.
Sigh...if only there was some motivation for him to stay among the living. He refuses to take prescription
antidepressants or painkillers
and I have tried natural nutritional supplements to help relieve his depression but they don't really work as he won't
take them every day. He doesn't have the strength anymore to even stand outside and water the plants so going out
to play golf or go fishing isn't going to happen. Kevin his room mate has been nice enough to bring home snapper
every now and then which he will eat because it is wild caught from the Atlantic. I had thought about getting him
to visit his sister on Sunday so he can talk her into voting for Trump...that is one of his goals since she has never voted. I did
manage to get her registered to vote - so that was a first step. I am going to try to get her to send for a mail
in ballot if it's not too late to make it easier on her...ours has already come in the mail. Well that idea isn't going to
happen as he is still sleeping again just like yesterday - will probably sleep until 2 pm. He didn't even finish drinking
his morning 16 oz of icewater - it is still sitting there. Beautiful sunny breezy day, my mom just got back from a funeral
for one of our old neighbors from Melbourne - my sister wanted me to go with her but I just couldn't go
- it would be just too much for me and Jim doesn't want me
to even go up to my house as he doesn't want to be by himself here. I printed out his blood work from the online account
that got uploaded by the hospital when we were there - it takes them about 3 days to get around to uploading it.
His numbers are all low just a little higher than they were a month ago. I wish he would take iron as he's very anemic
but he read that cancer likes iron so he won't take it anymore. His sodium was low too so I am going to try to
reason with him that he needs to take a shot of gatorade. He refuses to put salt on his food even though he needs it.
Update: Monday - 10/17/2016 Well Jim did his usual routine of eating his oatmeal
and then going back to bed and sleeping until only noon - this time, lately he's been sleeping till 2 pm. He felt
well enough to go out for a walk after I made him a protein shake.
He has not left the house to go anywhere since we got back from the hospital Tuesday 10/11/16 - 6 days ago.
Won't go to the store with me...just stays in the bedroom watching the tv and computer and sleeping alot.
So for 6 days now I managed to get 2 quarts of liquids in him per day and at least 2000 calories. He did drink
1 shot of gatorade - something he refuses to drink but it's a start. He has to see his radiologist on
Thursday morning although I don't know what for as there is really nothing he can do except show him the blood
work that was done at the hospital. He will just tell him to drink more water - we won't know if the radiation
worked until he can get a new Petscan after Dec. 9th sometime.
His sister and Ed want to take him
out to eat thinking it will help but he really does not do well in restaurants. He looks like he's in pain
just sitting there and then after he eats he gets instant pancreatitis from the change in diet. He does
not look like he's enjoying himself at all. Maybe it's because he's afraid of what the food will do to him.
I think he does better if we just bring him something to
eat and he eats it at home where he feels more relaxed - less stressful for his stomach.
He prefers not to sit at the table to eat - only sits in the lazyboy or in bed. He has missed many holiday
dinners because he just doesn't feel up to it so I have gotten used to bringing home holiday dinner leftovers.
Update: Friday - 10/28/2016 I broke my right wrist so typing is a struggle in a cast.
Ed and I took Jim in his wheelchair to the Trump rally in Sanford- it was on his bucket list to get to
see his candidate in person...he got a clear view 30 feet from the back of the podium. Ed bought a few souvenier buttons
for him on the way out. Jim said it was one of the happiest days of his life when Trump won - he stayed up until
2:30 am watching the results on FOX. He also said goodbye to his sailboat this week which was
totaled in the hurricane. It was a blessing in disguise as he just would not part w.it even though he can't use it.
Maybe me breaking my wrist was also because now he has to get out of bed more often to help cook and wash dishes.
This will be a restful weekend as this week has been very stressful. Even though we went out to eat w.Ed twice and Jim
seemed to eat plenty he lost another pound-down to 129. I am still checking on his water intake even though
not as much as the first week. Am having a hard time getting motivated as my arm and hand aches sometimes. I will
be stuck in a cast for 4 weeks.
Update: Wednesday - 11/23/2016 Finally got my cast off last Friday and am wearing
a wrist brace so doing better now - not so hard to type. Jim wakes up and has his oatmeal and blueberries and sometimes
Ezekiel bread, eggs, a protein shake. He feeds the cats then goes back to bed and sleeps till about 2 pm so spends
most of the day in his bathrobe. I start making him lunch
around 1:30 - Kevin has been bringing home lots of snapper lately so he has been having that with rice and brussel sprouts
every day. Fish is easier on his digestion than chicken. Good news is he is maintaining his weight at 130 lbs.
He told me a week or two ago he did not want to
go to my mothers for Thanksgiving - he can only handle sitting up and eating for a short time then he has to lay down
because he says he gets pancreatitis less if he lays down. When it started getting cold out he said he was having
trouble breathing - I told him - you are laying down too much and you know that can cause fluid buildup in the lungs...
we have talked about this before - he knows he has to getup and walk around more and do deep breathing exercises.
He tries to get out and walk around outside about once a day and sometimes helps water the plants. He still does his
little trampoline and stationary bike sometimes...I just wish he would do more stretching exercises.
So I will be going to my moms by myself this year. She didn't cook last year and after going out to eat last year
the lines were so long she decided she prefers to stay at home and cook. Luckily my brother is still staying
with her so that takes a load off me and my sister is going to come down the day before to help her out.
So maybe I won't have to do as much dish washing this year as in years past - yeah right.
Update: Got Results of Pet Scan - Tuesday - 12/06/2016
We went to see Jims radiologist today and he showed us
the results of his petscan - good news is the radiation he had done
on Sept.6th-the last day of his 5 day radiation treatment - did shrink the tumor on his pancreas to pin head
size and may still be shrinking it. He is also up to 134 lbs and his bloodwork is improving
-his platelet count which was 110 when he was in the hospital October 11th is now up to 135.
Bad news is they saw what may be stomach cancer or a tumor
in the stomach area - lit up larger than the previous tumor.
They are scheduling him to have an endoscopy to take
a biopsy of the area to see if it is cancerous and what type of cancer
and take pictures of it if possible when they go down into his stomach.
Waiting for approval from Humana for the procedure and then scheduling to call.
He is bummed out but I found that he may be able to get targeted
radiation and pill type chemo just for that area - so we shall see.
He is very anxious waiting to get scheduled for this biopsy.
Went to ER 8:30 am: Friday - 12/09/2016 Last night Jim was having a great deal
of stomach pain until 2 am when he finally went to sleep. He called and talked to an EMT last night at
Florida Hospital Deland who told him to come in and then this morning I told him to call the Humana
nurse and she said the same thing. So he did not eat anything in the morning in the hopes they would
admit him and he could get an endoscopy and biopsy. Well his blood work and other vital signs were too
stable for him to be considered an emergency so they sent him home w.higher doses of Omaprazole prescribed,
Carafate and painkillers. He was very despondent as the On Call GI Dr was ready to get him in Sat am for
an endoscopy but the admitting physician said No - that he would have to get that done as an outpatient.
This decision was made after the admitting physician talked to Jims radiologist and GP....they do not consider
the possibility of cancer spreading as an emergency unless you have internal bleeding and his blood work did
not show any signs of that. So this was a learning experience for Jim - I already knew and told him
ahead of time that he would not get it done as he was not sick enough yet.
I asked him tonight - do you think this was a waste of time and money
going to the ER and he said no - he had to try. So Monday we shall call Humana and tell them what happened
and hope the GI dr can get him in for an endoscopy sooner since he knows what is going on based on our ER visit.
On a happier note Kevin caught enough fish to last Jim a week so he will be eating that and organic peeled boiled potatoes
since it is easier on his stomach. No more brown rice as we found out that is harder to digest.
After eating he is not feeling any pain so far so I attribute that to the increased Omaprazole
and a softer diet. Yesterday while I was gone he ate soup that had boiled red cabbage and celery in it
and I think those are too hard for him to digest now. He thinks the bright spot on his Petscan is in the
same spot where he had a bleeding ulcer near his duodenum where the surgery was done as we were told
it is along the surgical clips. He had a bleeding ulcer
there a year ago so we are hoping it is just an ulcer and not cancerous. The FDG uptake of 6.3 indicates cancer
but that is just one biomarker and only a biopsy can tell for sure...he is just worried if they don't get on
it right away it could become cancerous or if it is already it could spread.
We are hoping he can have radio isotope seeds implanted in the tumor to irradiate it (heard good results from
a nurse about that),
or SBRT targeted radiation like what he had previously or oral chemo to kill the tumor. He is willing to do targeted chemo just not the whole
body approach as he feels his body cannot handle it. He feels and has reiterrated to me many times and to his physicians
that the shotgun approach of the gemcetabine (Gemzar) just does not work for pancreatic cancer.
He is still having his carrot juice and protein shake each day
and his weight was 132 lbs at the ER so he is keeping weight on.
The other good news is that his platelets have finally gotten into normal range and his hemoglobin although
it is low is considered stable. Yes Jim says he is a rebel when it comes to battling his cancer - he does not
go along with the standard protocol of chemo and I feel that when he talks to his doctors they blame him for not doing
chemo when there is a reoccurence. I try to tell any new drs that do not know his story that it is amazing
that he has beat the odds for 2.5 years now without doing chemo and taking primarily a holistic approach.
I bet him a steak dinner that they will not find any cancer in the biopsy - I just feel like
it is just inflammation and ulcers. The SBRT radiation he had 3 months ago can
actually create ulcers and even new cancer so it is a double edged sword. The last time Jim had a steak dinner
was when we all went out to dinner after Trump won 11/9/16 exactly a month ago. I wish he would eat red meat more
but he has read that he should only be eating fish or chicken ....but once in a blue moon is ok.
Saturday - sleeping all day again - 12/10/2016 Jim is back to sleeping all morning again
and spends most of the day laying in bed. He still had the same pain he has every day-just not as bad as Friday night.
I picked up his prescriptions and some asparagus to add to his new diet. So today he had the baked fish, boiled potatoes
and steamed asparagus. He is taking 40 mg Omaprazole twice a day now and will get him to start on the carafate
and pain killer when needed. He is always in a little bit of pain and irritable thus tough to be around
- I am really looking forward to the day when he will finally take some painkiller...
he never would before but said if it got bad again he would do that instead of deciding to rush off to the ER.
He knows that there is no cure and all he can expect is palliative care since he refuses to do chemo and even then
with chemo you feel even worse.
They have given him painkiller before but he just won't take it - says he wants to know what is going on
in his body - sigh.
ENDOSCOPY/BIOPSY - Friday - 12/16/2016 Jim finally got his endoscopy at 1:20 pm today. The GI Dr that did it
came out and talked to me afterwards while Jim was recovering.
He said he would have results from the biopsy within 2 weeks or less.
The color images I will post on here when I have time. He has a large dark spot and 3 lesions near the area of surgery
where his stomach was reattached to his duodenum when he had his Whipple surgery 2.5 years ago.
It is normal to have cancer reoccur along the surgical lines and staples first. So all we can do is wait and pray
the biopsy does not show a reoccurence of cancer. Jim could not eat all morning before this procedure so had oatmeal
w. raspberries as soon as we got home as he was starving. In the meantime I cooked him his usual baked fish, boiled potatoes
and steamed asparagus. Yes he would of liked something like a steak as he was so hungry but he has to be careful
about what he eats - everything has to be mild (bland), soft and very easy to digest.
We are hoping increasing his Omaprazole to 40 mg will help to make stomach ulcers go away and heal his stomach
of these lesions that have developed within the last 3 months since his radiation in September.
He is still taking Norco for pain (hydromorphone w.aceteminophen about twice a day) since he was in the ER on Friday
the 9th. I am so glad he is finally taking something for the pain.
targeted radiation - although it did help make the cancer on his pancreas go away -
it may have also caused these lesions. This is one of the side effects of radiation that we already knew about.
It is a double edged sword - radiation does kill cancerous tumors but at the same time can affect other organs
nearby such as the stomach in his case. In the Left photo you can see what are called
- these are swollen veins in the esophagus that could have breakthru bleeding. We had not seen this before
- this is something new.
The Dr pointed them out to me and attached a page to the report telling about what they are. You can click on the link
to read about it. I am actually more worried about these because internal bleeding from them can cause you to
spit up blood, or have black tarry stools from digesting blood,
this means we need to be more careful about him having a soft diet.
We don't know at this time what they are caused by since Jim was not a drinker-they were not caused by cirrosis.
We plan on making an appt w. his GP first thing Monday to get referred to a specialist that may have more answers.
Unfortunately Jim does not like his last oncologist which he has not seen in over a year since he is not doing Chemo
he has decided she is useless except for bloodwork which his GP does a better job of. So I have a feeling his GP is going
to refer him back to his radiologist for answers. I predict we will not get an appointment with him until the 1st or 2nd week
of next year at the earliest. I appreciate everyones prayers. So if anyone out there has any experience with someone that
has had Esophageal Variaces
or has them - let me know your thoughts. Waiting for biopsy results from his endscopy
can take up to 2 weeks so I am sure we will not have any results till after Christmas. You can bet he does not care about
any holidays at this point all he cares about are the biopsy results. For those of you that have no experience
w. waiting for biopsy results or ascites fluid results they can take anywhere from a few days to weeks because in some cases
they have to try to grow cancer from the cells in order to see if they are cancerous and what type of cancer they are.
Of course as soon as they see cancer they do the report but sometimes it can take 2 whole weeks for cancer to grow
from cells that were taken. Or in Jims case - in the past (read about when we were at the Orlando Florida Hospital)
they let the sample sit too long so it went bad.
Tissue and fluid samples cannot sit for very long as it skews the results.
GP VISIT - Monday - 12/19/2016 We made an appt right away for Jim to see his GP
this Tuesday am as he needs to get a refill on the painkiller he got at the ER on 12/09.
His GI Dr could not refill it for him. I am just glad he is willing to take it.
Luckily he still has something similar left over from a year ago just in case. So far the pain has not been
that bad - I am hoping the increased Omaprazole and carafate is working. I was contacted by 2 other lady
Whipple Warriors that aren't doing chemo and have been talking to Jim about things. One was only 57 and
has been in hospice since Oct. 15th of this year and feels better since she quit chemo but they would not let
her get a petscan since she was considered terminal
- so Jim told her, go home and get a petscan and try the Gerson Therapy.
The other one is a quite young looking 73 and never did chemo and is telling him about all
the natural remedies she has tried. He enjoys talking about all the things he has tried and hearing
about others that have tried various natural remedies. Will probably not hear about the biopsy results till
after Christmas so he is looking at roadsters - planning on getting rid of the Miata
and looking around for something different if the results turn out ok. Kind of like the way woman change hairstyles
- men change cars to make themselves feel better.
STILL WAITING - Tuesday - 12/27/2016
We are still waiting for the biospy results from Jims Endoscopy 12/16/16. He didn't feel well enough to go to
his sisters for Christmas this year. Am glad I made a turkey the day before so at least he ate plenty of that.
He has been doing the 1 teaspoon of baking soda and 2 teaspoons of molasses in a 6 oz glass of warm water
regimen that is supposed to kill cancer cells. Still makes his fresh carrot juice every day. Eats his oatmeal
with berries every morning, protein shake and sometimes boiled eggs then goes back to bed and sleeps until 2 pm.
I am so glad he made it thru Christmas as it has been a very tough month of him not feeling well.
GREAT NEWS - Wednesday - 12/28/2016
Nurse from Gastroenterology office called and told Jim - NO CANCER! in biopsy - Yipee!
She said it was just inflammation which is what the Dr said right after his endoscopy. So as long as
he keeps taking his increased omaprazole- the inflammation should go away. Will be doing another Petscan
in 3 months to see and maybe another endoscopy. What a relief!
HAPPIER NEW YEAR - SUNDAY - 1/01/2017
Jim made it over to the neighbors for New Years for the first time in 2 years.
I was so happy he felt well enough to show up. Thank you everyone for all your prayers as
I think that really does help.
STILL SLEEPING LATE - Sunday 1/08/2017 Jim still sleeps late most days but it's been so
cold lately can't do much anyways. He is still taking 1 tsp baking soda and 2 tsp of
molasses in 8 oz glass of warm water twice a day to kill cancer. He tests his alkalinity daily and it is up to 8.0 now
which is what it has to be to work. He truly believes it works. Will be having blood work done soon to see if that
has improved at all before seeing his GI dr on the 30th.
STILL SLEEPING LATE - Tuesday 1/25/2017 Jim sleeps all morning most of the
time unless we have an appt to be somewhere or someone is coming to visit early. He has been quite preoccupied
working on making his '99' Z3 look perfect and maintaining his health. I in the meantime besides doing my website work,
and everything else around the house and yard have found a couple of websites dealing with NDE's which is a subject
I had ordered books about previously. No more ordering books as there is plenty of material online. It may seem
a morbid subject to some people but I find it fascinating. Had my yearly physical recently
and all my bloodwork is fine, just getting a lot of dental work done that I had put off. Jim doesn't want to go to the dentist even though he needs to,
he says he sees no point in it. He is still waiting till the 30th to talk to his Dr about his
esophageal varices. At least he let me order 2 magnetic strips to hang his tools on in the garage - now
if I could just get him to put them up I could start to organize that garage. Getting Jim to be more organized is like
pushing a rock up a hill and getting him to let me organize the garage is even harder. It has taken many years
just to get him to agree to putting magnetic strips on the wall. He even agreed to have Ed come and put them up
when he comes down to pick up the rest of the firewood. Now if this painkiller would just kick in cause the novocaine is
Near Death Experiences - Inspirational site where people write in about
their NDE's - read the Exceptional ones first.
NDE's - Near death experiences and the afterlife, some
written by notable and famous people.
FITNESS TRACKERS - Friday 1/27/2017 After getting Jim to answer his Humana health questionaire
to get him more points towards their merchandise I have come up with an idea to maybe get him to be more active. I'm going
to get him a fitness tracker so he can get more points towards merchandise, gift cards, etc. He likes getting the gas and
restaurant gift cards with reward points. Maybe that will motivate him
to get up and walk more. So since he refuses to wear devices that communicate wirelessly I am going to have to start him off with a simple
pedometer I can plug into my computers USB port and upload his steps to the Humana Go360 website. He already got gas cards last year just
from me making him answer his health questionaires on there last year. Maybe if he likes that I can upgrade
him to a wireless fitness watch that tracks heart rate and sleep as well as steps. There are only certain brands they will accept data from but
they are mostly main stream and easy to find on sale online. As for myself Florida Health Care doesn't have a program like that
so I found Walgreens lets you earn points towards their Balance Rewards to buy their own merchandise. So I found a list
of Fitness Trackers they will accept data from. It is hard to find the type of pedometer that
tracks all steps - not just fitness steps, will let you know when I find the best one that is Walgreens compatible.
You have to look for a Tri-Axis Pedometer that will keep track of slow steps too. After much research I decided to go with
a fitness watch that is Tri and supposed to count all steps and movement once it is programmed correctly.
After looking at what Fitness Trackers are laptop compatible and also accepted by other discount shopping sites besides
Walgreens I have decided to get Jim the Garmin Vivosmart to hook up to his Humana Go360 account..
Wish I had known to use a tracker to get points sooner after all those years of putting miles on the treadmill
There are many different kinds of fitness trackers out there but you really have to research to find those that will
Earn you something across
multiple shopping sites. Fitbit was the only brand that was accepted across multiple sites
and works with laptops thru a usb port since I don't own a smartphone.(sorry but I have seen smartphones create more health
problems-like stiff necks and hunchbacks). The Vivosmart and Walgreens trackers hook up to my laptop thru their chargers
thru my USB port for charging and uploading data. So it doesn't matter if you don't have a smartphone-all these trackers
let you upload data thru your usb port.
I did find out that Blue Cross Blue Shield and Florida Health Care do not have any fitness incentive point programs like
Humana does but maybe someday they will. Will let you know how my test of these particular Fitness Trackers go
with housework and yardwork. Here are some more Ways to Earn Money with Fitbit
Walgreens Activity Trackers
GI DR VISIT - Friday 1/30/2017
Jim got good news today from his GI dr - he gained weight finally - up to 136 lbs. - Yipeee!
He attributes that to his 2-3 times a day baking soda and molasses regimen.
Also found out his esophageal varices were not that bad but will be having some liver blood tests
done to make sure his liver is not causing that.
Now he just has to get his iron and blood levels up as he is very anemic but afraid to take
iron because cancer feeds on iron.
So am hoping he will consider eating more dark green veggies, clams or red meat, not just fish all the time.
He will be increasing his B12 & folic acid too. He still sleeps late, after feeding the cats and eating breakfast
he goes back to bed and falls asleep, usually spends all morning in bed and doesn't get
up and moving until 2 pm. He also falls asleep after eating his late lunch/early dinner around 2 pm.
I think eating wears him out because his body has to work so hard to digest it. He has to take a pain pill every
evening as he still has pancreatitis every day.
I told the Dr he spends too much time in bed and the Dr reiterated what I already told him - if he lays in bed too much
fluid collects in the lungs and he may eventually get pneumonia. So not much has changed as far as his daily routine.
He does read a lot and his favorite thing to do is to go to the Halifax Hospice Thrift store or Goodwill and buy books.
My mother gives him plenty of books too but she donates hers back to the library - wish Jim would do that as we are running
out of places to put them. Her blood work is still better than his at 82 even w.one kidney and no gallbladder
- so the next goal is to get his blood to improve. It was disappointing that after all the heathly foods he eats and nutritional
supplements he takes that it actually got worse. Mostly he is going to start taking iron again as his ferritin is
only 10-too low so he really needs more iron. He just doesn't like taking it because cancer supposedly feeds on iron.
RADIOLOGIST - Thursday 2/02/2017 Jims radiologist is going to setup another Petscan for
March 6th - we have learned to get these things scheduled way in advance because it takes so long to get approval
from Humana. The specialist has to notify the GP and then they have to get it approved and then finally
it can be scheduled. Also need to get him referred to a Hemotologist for his bloodwork so
waiting for that referral. Found out today his GP will no longer fill his pain meds so had to get back on the phone w.
his GI nurse to see if that Dr can fill them instead. What a run around - if we had been told that when they gave
him the prescription we could of gotten it done when we saw the GI Dr last Friday. Jim had his liver tests done this morning
so will be waiting for those results soon. I had to get another crown put on at noon so had to
go straight from his DR to my dentist - am waiting for the pain meds to kick in.
He was so tired after driving around this morning when we finally got home he put his pajamas on and went straight to bed
after I made him a protein shake. I've had a stress headache since this morning and even taking ibuprofen it won't go away.
The good news is I just got the activity tracker I ordered for him so am setting it up on the computer and
am looking forward to trying it out.
ACTIVITY TRACKERS - Sunday 2/05/2017
I have only been testing the Vivosmart for 3 days and yesterday got in 10,000 steps quite easily by walking the dog once and
then Jim once to the cul-de-sac and back - the rest of my steps were from just doing things around the house like sweeping,
pulling weeds, watering plants, cleaning the edges of the pool w. the scrubber brush each morning, cooking lunch,
doing laundry. Things I do on a daily basis gave me easily 7500 steps. It's easy to swipe the screen to see how many steps
I got in as I go. I think I am making us $5 a day on Jims Humana account. I plan on getting Walmart cards w.those points
to buy Jim his healthy food like brocolli, red cabbage and celery. As for me- I can see it going towards my favorite
wine or beer - OK yes I like eggplant and cabbage too - LOL. Kinda fun thinking about walking for beer.
Am looking forward to getting the walgreens trackers to see how well they work as I have bought wine there too
- will let you know how their trackers work out. Just opening a walgreens balance rewards account will get you
starter points and also more points when you answer their health questionaires and hook up a tracker
to it so it works very much the same as the Humana Go360 website. Be sure to swipe their little balance rewards
card everytime you make a purchase there..sometimes I forget. The tracker has motivated Jim to get up and walk each day...
or maybe it has motivated me to make him get up outta the bed to walk each day.
If you are one of the neighbors and have questions or need help with a tracker just ask. Same goes for Whipple Warriors
or anyone that wants to learn how to use trackers. Be sure to Like or Share this page on Facebook or Twitter. There
are links for those social media icons that popover on the left hand side of this page.
Yes I do make a tiny bit of money when you click thru any link and buy something...
that is the reason for the advertising on all of my pages.
You pay the same whether you click thru my links or go to a site directly as I am an amazon and ebay affiliate.
I do plenty of research before posting links so everyone gets the same deal as me which is the best deal possible that
I am able to find. If you find a better deal somewhere else let me know, I can be contacted thru the contact forms
on the bottom of this page or directly if you have my email address.
SUPERBOWL SUNDAY 2/05/2017 Jim is resting comfortably in his lazyboy watching
the Super Bowl - actually he fell asleep...which gives me more time to write after making us lunch. Already got 8600
steps racked up on my tracker by 2 pm so making it to 10K steps is a breeze.
My younger sister actually has been using a Fitbit for over a year now - so that inspired to me to look at them.
JIM IS FEELING Very WEAK - 2/7/17 - He sleeps all day and has to force himself
to get up out of bed to do things. Yes he has me waiting on him hand and foot sometimes - but not because he's lazy...
he just does not feel well. He tries to take a walk in the late afternoon or early evening. Humana
finally approved him to see a new Hematologist this coming Monday the 13th. He also has to go to a Pain Management Center
the following week. His regular doctors can no longer prescribe pain medication - it has to be done thru them.
In the past any Dr could prescribe them but because of all the abuse over the years we found out that he
has to go to a special clinic for that. He was told to go to one previously but refused as he didn't want to take pain medication but now
he has to take it every evening. His platelets are low so he is taking iron but if it does not improve he may
need a bone marrow biopsy according to his GI Dr.
His platelet count in December was 140 and now it dropped down to 108 - not good. He ordered a bunch of Nelson Demille
books and has been staying in bed reading most of the time when he isn't sleeping.
GOOD NEWS - 2/6/17 - Jims liver blood test came out fine - so there is nothing wrong with his liver.
Will be seeing the Hematolgist on Monday the 13th - new DR so will be doing all her offices paperwork and giving
her lots of copies of Jims stuff.
Walgreens Activity Trackers
My Experiment - 2/7/17
I didn't have a smartphone (never needed one - we only get calls from doctors offices and pharmacies as everyone else
communicates mostly by email)
and found out that these Walgreens
Trackers are Bluetooth so only work with mobile devices like
smartphones or Ipads. I was thinking of giving one to my
mom that is 82 to see if it would help her get up out
of her lazyboy and move around more. So I gave it to
an 80 something neighbor that did have a smartphone.
Well his first complaint was that you can't see the screen...
I guess since this smartwatch was the cheapest $20 kind that I could
find - that means you don't get a very well lit screen.
However he did say that it kept track of his steps quite well
for the first 3 days. The app that connects the band to
the smartphone worked quite easily and connected to
his Walgreens account. He was able to see points ad up
as it updated itself quite regularly.
After that I think he may not have plugged it in to charge it up so it failed to keep working.
It is supposed to store 5 days of data so hopefully after it is recharged it will upload the steps he thinks he lost.
These trackers zero out every day but do store your steps from previous days.
So then he decided he didn't like it. So I have a feeling
the same thing would happen to mom - she forgets to plug
in her little flip phone and it goes dead so expecting her
to remember to plug in something that looks just like a watch
probably wouldn't work for her. Watches are supposed to last at least a year before they go dead so to her it would
be annoying - she quit wearing a watch when she retired ages ago.
Vivosmart Activity Trackers
It takes extra effort to remember to
plug it in every couple of days so I am sure that would irritate her.
Plus I would have to get her a smartphone which would really
irritate her as I had tried teaching her how to use a tablet
and she just about threw it across the room. So rather than
aggravate my mom - I just aggravated a neighbor instead.
He'll get over it. A word to the wise - never buy parents
in their 80's an activity tracker or smartphone.
I finally did break down and upgrade my fliphone to a really nice
Android Smartphone at MetroPCS - ended getting one for only $17 after the rebate and
upgrade special which only increased my monthly fee by $5.
I will miss being able to put that little flip phone in my back pocket
- ordered a w.clip and screen protector online instead.
Will be interesting to see if Jim can handle holding it and talking
on it without hanging it up or dropping it. I picture him holding it away from himself
and yelling at it at first. He isn't ready to
learn how to use it yet - will give him time. Right now he thinks the alphabet agencies are listening to everything we
say thru smartphones so getting him to use it is gonna take awhile...as if him being on a laptop is any different.
I spent a few hours downloading shopping apps I use alot and the first one
I got working was the one for my Walgreens Tracker - it works great.
I am in front of my laptop all the time working anyways so remembering to
charge it will not be a problem. Already put in 75,000 steps (37 miles) = $33 since 2/3/17 (9 days) on the Vivosmart
that I have synced w.Humana for shopping cards. According to this tracker I walk about 4 to 5 miles a day on the average.
They say you should do 10,000 steps (5 miles a day) for better health.
Jim has been getting up and walking just about every day and my dog Charlie likes getting out for a walk so maybe
these gadgets have motivated us a little bit more. I like that it increases the goal a little each day and I enjoy
when it buzzes and says "Goal!" in the evenings.
NEW HEMATOLOGIST - 2/14/17 Jim is happy with his new hematologist, she is going to start
him on iron transfusion this Friday and once a week for 6 weeks - then he will have more bloodwork done to see
if this improves things. I have a feeling it will make him feel more energetic. She said the iron tablets he
was taking were too weak to do much. His ferritin was at 10 so that is pretty low which may be the reason he is tired
all the time and sleeps so much. Jim got me a pretty pink rosebush for valentines to add to my garden.
CREON - 2/15/17 Jim just picked up his most expensive prescription, his digestive enzymes
- which is covered by insurance for the 1st 2 months of this year - then it pushes him into the medicare donut hole
(coverage gap) in March. Lots of fun putting together the right paperwork to get him approved for gap coverage - groan.
More hoops to jump thru. I love the weather this time of year - just not the paperwork. He was also not feeling
well enough to walk today - sigh.
STILL SLEEPING TILL NOON - 2/18/17 The 1st Iron infusion Friday didn't do much - he's still tired
and wants to sleep all day. Haven't been able to get him up to walk the last few days. Has pain every evening even
on this soft bland diet. He was happy his sister came by yesterday and gave him a new shirt to wear - perked him up a bit.
Gave her a walgreens activity tracker to try but she barely racks up 3000 steps a day so far...so will test it next time I see her
as mine is working fine. Been doin about 5 miles (10K steps) a day on the average.
I miss my walking buddy - so it's just me and Charlie chihuahua walking each day. Thank God for zoloft as this is really
heartbreaking and that is the only thing that keeps me from cryin'.
A friend of his sisters had a Whipple this past September but lost 40 lbs in 3 months so they put him on
I had asked all of his doctors about him getting that months ago and they all said no. I read it causes blood clots and is only
used when there is rapid extreme weight loss so I guess they don't consider him to be that way. At least he was 133 lbs on
Friday so that means he's not losing weight. The problem is the omaprazole he has to take to reduce inflammation also
keeps his body from absorbing nutrients - so he just does not get enough nutrition from food or protein shakes
and even though he takes plenty of vitamins supplements we can't tell if they are helping at all.
I am going to ask all his drs again if he can
get intravenous nutrition next time we see them...mostly I will be asking his new hematologist as I think she is the only
one that can get it for him. He is trying to only take omaprazole in the mornings and then carafate in the afternoons to see
if he can slowly wean himself off the omaprazole.
PRC ASSOC- PAIN CLINIC - 2/20/17 Jims GP and GI and radiologist can no longer prescribe him
hydrocodone for pain because of the new federal guidelines - he has to go to a pain clinic. Well it turns out
that yes he can get a new prescription from this new Dr - who only spent 2 minutes talking to him - and his jaw dropped
when he heard how long Jim has survived since his Whipple. The bummer is that in order to get
his presciption refilled he has to come back before it is gone - within 30 days and pay another $40 co pay to get just a
30 day prescription. He is really upset about that as before he was able to get refills from his regular doctors for 3 months
at a time.
I guess the rules have changed as last year he had no problem getting refills. Maybe it's because he is NED - no evidence
of disease - but that still doesn't make the pain go away.
He still has chronic pancreatitis every evening and so he is going to try taking only ibuprofen to see if that works at all.
I know it won't work - and he is going to make my life miserable because he will be sooo irritable and grouchy in pain
just like he was before he started taking them.
I can deal with having to do absolutely everything myself but having to put up with his grouchiness on top of that..
I will be calling his GP to see if they can give him tramadol as that was what he gave him 2 years ago - not as strong
but it helped more than ibuprofen. Sigh - more calls to doctors and waiting for nurses to call back.
On another note - Jims laptop crapped out after 3 years so he ordered a $100 11" RCA touchpad w.keyboard & bluetooth
- will be fun teaching him how to use it as he is still struggling w. this new smartphone. He only does surfing & email
anyways and watches movies on our amazon account
so he really doesn't need anything fancier. Took a awhile to get him to understand that no one uses CD Roms anymore as you can
download everything online and put stuff on flashdrives - something he has never done anyways. He hasn't used his CD Rom on his
old laptop anyways cause it quit working over a year ago. Jim has a huge CD collection in case anyone is hankerin to watch old
movies and lots and lots of books- yup he's a packrat. Time to buy another bookcase. Oh well - there are worse habits one can have.
GP Said Yes to Tramadol - 2/21/17 So glad the nurse said Jim could get Tramadol from his
GP so no more going back to that Pain clinic. He was up all night complaining about that place - Phew-so glad that issue
is over. So now he is back in bed sleeping late again - nothing else to worry about for now. Am just getting over my
wonderful ordeal of having 2 temporary crowns put in yesterday-aargh.
2nd IRON INFUSION - 2/27/17 Monday Jim got his 2nd iron infusion today. I was gone for 2 days
up to my house trimming palm trees so he didn't eat very well while I was gone - would not even steam his own veggies.
I left chicken and potates for him to heat up in the oven and he wouldn't even do that...instead he drives to publix
and gets a baked chicken - oh well. Brought back some prickly pear cactus and put them in pots - will see how they do.
Took him to Denneys after the dr visit - that put him right
to sleep after we got back. At least he didn't lose any weight - same 133 lbs. at the infusion center.
Going to see his GP Thursday for his pain meds and try to ask about Nutritional IV but I know they will just say
go talk to the hematologist but I know we have to wait for blood work results scheduled for the 13th
and of course petscan results too. Good news is his petscan is all scheduled and approved for March 6th. Oh and the weather
is beautiful - must be spring - I think winter is over now - will be very surprised if it gets cold again as it is
in the 80's already. Nice time of year to leave all the windows open as it is nice and cool in the evenings. Maybe I can
talk Jim into driving around w. the top down.
Phlebitis? - 3/01/17 Wednesday
Jim pointed out to me the veins on his upper left thigh were really lumpy-I saw something similar online
and it looks like Phlebitis. He sees his GP Tomorrow so hopefully dr will order an ultrsound as
Jim had DVT 5 years ago before his Whipple. He ordered pomegranate seed extract capsules to clean out his arteries.
His platelets are still too low so he refuses to take aspirin to prevent clots.
I just hope they don't put him back on coumadin (warfarin) like they did years ago when he had dvt.
Luckily his legs aren't red, hot or painful like they were with DVT
...maybe it's just the weight loss and his veins stick out more now. Sort of like really bad varicose veins
but with lumps and bumps in them. GP look at his leg veins and just said it was from losing weight they were sticking
out more and didn't feel he needed an ultrsound on them. She said as long as there was no redness, swelling or pain
his legs were ok.
Pet Scan Result Day 3 pm - 3/08/17 Wednesday Going to see Jims radiologist at 3 pm to talk about
what the results are. He says he is so full of anxiety he will need to take a lorazepam just to go there. He woke up
saying he just knows the results will be bad - not a positive mind set. I on the other hand think the scan will look the same
or improved a bit as he still has inflammation in his stomach and esophageal varices.
When Jim went for his infusion Tuesday they gave him his bloodwork to show to the radiologist - platelets have improved
from 112 to 122 - still below range though, white blood count is still lower by a .1-
and the rest of his bloodwork hasn't changed much - still low below range. He still has 3 more iron infusions to go
and I read it takes about a month afterward to see any improvement.
Still waiting for results of his CA19 and ferritin on the 13th.
Hematology told him if his WBC does not improve they may give him
something for that but he can't remember what. He says he is in more pain and feels weaker. At least he agreed to quit the baking soda and
molasses for a few days until after the Petscan as I feel that is making him feel yucky as he says he "feels yucky".
I knew I was going to have to eat soft foods after I had my crowns put on Tuesday so am glad I talked him into
going to the Roadhouse Monday while I could still chew. He eats plenty when we go out to eat but later it causes him more pain. He ate all the fish
Kevin had caught so it is back to chicken again. Too windy out when Kevin went fishing this weekend so he had no luck.
Cranes hatched 2 babies down by the lake and the weather is nice and cool in the mornings and evenings
- great for watering, weeding, pruning and planting.
Bad News - Locally Recurring Tumor is Back - 3/08/17 Wednesday
Went to Radiologist today ad after sitting and waiting till 3:30 pm he showed us the scan.
Tumor on pancreas that he had radiated before has returned and it appears larger
than before it was irradiated back in Sept. Unfortunately the person who wrote the report did not put
the size of the tumor on it - it took us a week to get an addendum done and it showed to be 1.4 cm X 1 cm so that is smaller
than the previous recurrence back in July 2016. Unfortunately we know that a recurrence can be a
rather fast growing tumor - Dr says he has 4 months to live same as before.
Cannot irradiate it again - cannot cut it out - same as before.
Jim refuses chemo so this is it.
So he is back to taking his baking soda and molasses.
There are no clinical trials that are not chemo.
So we are hoping on Monday when we go back to the hematologist
that she will allow him to at least get IV nutrition as that is the only thing left for him.
We stopped and told his sister and her husband on the way home.
This would explain why he is so tired and in pain more than before. Sad day.
Debbies Health food and Publix for Organic Produce- 3/09/17 Thursday
Well after Jim keeping me up all night being full of angst and anxiety I finally got to bed after midnight.
Then Jim decided we had to rush off early this morning to Debbies
Health Food w.no warning to me ahead of time - so I got nothing done this morning....
after we got back I made him his organic lunch and finally had my cereal and caught up w. watering plants
and emailing my customers. I appreciate Margo his Naturopaths input
but she just told him - no more oatmeal or protein shakes - so I am not happy about that. She has him eating
soup w.organic vegetables for breakfast which is new and then all organic meat and vegetables
for lunch which he already does.
Of course she gave him a list of natural supplements to take and he started taking them as soon as he got home.
He has taken her supplements before back in the fall and after going thru 3 bottles he quit as he felt they did nothing.
So he is going to try again to take the same thing along with more supplements she says he needs
- I will list them all here later when I quit steaming - and I don't mean vegetables.
What Jim will be taking now: Powdered Bone Broth protein to put in his soup of potatoes, celery, brussel sprouts,
tomato, parsley and beets, Zymactive to be taken
with Margos Immune Extreme Life Protect Supplement 3 times a day, L-Glutamine for the esophagus and digestion which he
has taken before, 1000 mg vitamin C, D3, B12/Folic acid, B17 (laetril), Multi-vitamin w.out iron for men which he has always taken.
He is going to quit his iron infusions when he talks to his hematologist on Monday as he feels that feeds the cancer.
He plans on slowly weaning himself off the Omaprazole and Carafate that were prescribed by his doctors as they
block absorption but do prevent bleeding ulcers. She did agree at least he should continue his lorazepam and tramadol.
2 pm and he is now fast asleep and will probably sleep the rest of the day as now his sleep pattern is to be up all night.
NO MORE OATMEAL - 3/11/17 Saturday Jim is taking less Omparazole as it blocks absorption - although
it does keep him from getting bleeding ulcers and the inflammation in his stomach went away that had been
there on the previous Petscan. He knows he has to get off the ppi's slowly.
He is down to 20 mg omaprazole a day and taking L-Glutamine instead and feels better.
Naturopath said no more oatmeal (too acidic)-instead he has to eat organic vegetable soup in bone broth, eggs for breakfast
and only steamed vegetables and organic meats, green juice, carrot juice.
Taking extreme immune, C, D, B12/folate, no iron infusions, seeing hematologist Monday.
I just hope this new diet doesn't make him lose weight as he seems to take lots of pills all morning and didn't eat until
noon yesterday. We keep a big pot of the soup in the fridge so he can heat it up anytime and then make steamed vegetables
and meat in the afternoons. He can't eat uncooked vegetables as it is too hard for him to digest. He is supposed to drink
1 carrot juice and 2 green juices each day and lots more water - that is the tough part. Can't eat fruit either unless
it is in a smoothie and she just told him to quit his protein shakes w.fruit - so I'm sure she will have him buy
her recommended brand of protein shake mix - he used to get the pea protein shake mix but it doesn't taste as good as
the Body Fortress Whey Isolate brand from walmart and of course costs a whole lot more. Jim keeps asking me what to do
and I just tell him - do what she says - after all you paid for her advice. No matter what I suggest he just does
what he wants anyways - so I don't suggest anything anymore. As far as praying he feels that one prayer a year is enough,
he is not the pray every day type. Because of things that have happened to people close to him that prayed alot and
that he had prayed for in the past he feels it does not help at all - but I will keep on praying for him. I also
greatly appreciate everyone else that is praying for him.
GLUTEN FREE OATMEAL - 3/14/17 Tuesday
Last night Jim decided to pickup his Omaprazole and start taking it again because of all the pain last night he feels
was from not taking it.
Jim decided we had to rush off to Debbies Health Food at 8:30 this am to see if he could catchup with his Naturopath
Margo walking in... to talk
to her but instead had to make an appt for 3 pm because she is booked solid. So he bought some gluten free oatmeal
and pancake mix. Gluten free products are all made out of Rice Flour which I have read is actually more toxic
than wheat flour so I don't believe in the Gluten Free BS - also all non wheat products are
gluten free anyways - like oatmeal for instance.
At least he will continue to eat oatmeal and pancakes this way to keep some weight on.
Also picked up the addendum to his Petscan finally today so we could find out exactly the size of the locally
advanced recurring tumor
and I was happy to see it measured much smaller than it looked pictured on the petscan
- 1.4 X 1 CM - 6.7 FDG Uptake so that was good news- smaller than when
it showed up as a reoccurence the 1st time back in August when it was 1.9 CM.
Hematologist still did not talk him into chemo even the tablet kind which is Xeloda (folfrinox) although I thought he
should try it since it is just a tablet.
He still intends to fight it thru doing the Gerson Therapy of all organic vegetables, carrot/green apple juice
and all green vegetable juices
so we shall see how long he lasts following that regimen. Right now he is fast asleep after being out and about all morning
he came home - had his organic grass fed hamburger from Publix and steamed potates and brussels sprouts and a Debbies brand
protein shake w.peeled pear. When he wakes up he is supposed to get started on making green juice from whole organic beets,
red cabbage, celery, and as many green things as he has in the frig and a few carrots too.
The beets turn everything red so it turns his lips and mustache purplish red now. His complexion was dry and had red patches
and the Naturopath said that was toxins leaching out of his body - I on the other hand think it was from him using
cheap used shavers so I told him to throw them all out. I did not mention to her sneaking him out to Denneys for real food
after he had lost 4 lbs in 4 days following her wonderful diet advice. He has a good appetite but just not for vegetable
soup in the morning.
HEMATOLOGIST - 3/18/17 Saturday Jim wasn't feeling well Thursday - spent all day in bed and
never got out of his bathrobe. He missed his GI dr visit - so I made sure to get the petscan report sent to him.
He later said he saw no point in going to see him as there is nothing he can do. He also missed his Radiologist visit
so we rescheduled it to Friday morning. Good news was his weight was back up to 132 lbs. and blood pressure
better at 117/60
Well his Radiologist told him about the same thing as the Hematologist - go to
Moffit and sign up for a clinical trial. He also suggested Jim get genetic testing so will be hearing from a place
that does that. We already went thru that rigamarole up at Shands 2 years ago - he refused to pay the $1500 copay per test.
So we shall see what this new outfit charges. Most of the targeted clinical trials are all chemo or chemo and something else
so he does not have much interest in it. Even though all his records could be sent to Moffitt in Tampa they are going
to want to see him in person and probably do bloodwork. Even after that he may not qualify for a clinical trial
because he never did the adjuvant chemo after surgery. There is a long waiting list of people with pancreatic cancer wanting to be in clinical trials
for whom regular chemo did not work. He has already said he does not want to go to Moffitt - will see if he changes his mind
So for now for anyone interested this is his all holistic approach:
Oatmeal w.raspberries, boiled egg for breakfast, Debbies protein shake, greens and carrot/green apple juices,
all organic meat and veggies. Coffee enemas to flush out his liver twice a day.
Quit the Glutamine capsules as they feed cancer, quit all iron for same reason.
He quit his Omaprazole (Prilosec) and is replacing it with Zinc Carnisine and Gum Mastic capsules - says he
felt better just from that. He is taking
Debbies Immune Extreme and Zimactive (protoletic enzyme) 3 times a day, still takes his Creon capsules w.each meal.
Spirulina, Vitamin D, Magnesium, B12/Folic acid, 1000 mg Vitamin C - 5 capsules a day, Mens Multi-vitamin.
Will still be getting bloodwork done by his GP each month as no reason to see specialists anymore.
Can't get another Petscan for 3 months (June 6th earliest) we were told and also hard to get approved by insurance
if you are not doing chemo or radiation.
He stays up all night and sleeps all day but does manage to get on his stationary bike for 30 minutes a day and sometimes
his trampoline and lifts a few weights.
I'm going up to my house today to fertilize and spray the date palms and will be back late Sunday or early Monday morning.
FORGETFULLNESS - 3/19/17 Sunday Jim is forgetting things more than he already does and is
having trouble finding words to finish sentences more than usual. Could be all the meds he's on - I think
the brain needs glucose to function and he gets very little of it. I got home around 11 am and he was up and waiting
for me to make him a protein shake as soon as I walked in the door. I sucked down a 2nd cup of coffee, unloaded
the car and hit the ground running - as usual - water plants, clean pool, put away dishes and things, clean off
the counters, take out the trash, do laundry, peel and cut up veggies for Jims special soup and hamburger to go w.it later,
check email and sweep while cooking. I feel kinda tired still from spraying and fertilizing palm trees all day yesterday.
By 3 pm I got to have lunch myself then the juicing routine starts. According to my tracker I average about 4-5 miles a day
without even going out for a walk.
Luckily he actually remembered to turn off the hose in the pool after I called him yesterday to turn it off
- after he told me to turn it on before I left. Yes I know there are timers for hoses - I use them myself up in Bunnell.
Time to get hose timers for this place. Now if I could just put the stove top on a timer
to shut off on it's own when he leaves it on.
He is trying to do his juicing in the kitchen and just lost the cheesecloth for squeezing all the juice out of the pulp.
I peel and clean all the vegetables for him - all he has to do is put them into the juicer to create
the pulp the juice is made from. It has to be put into a cheesecloth for putting into the juice press - he can't drink the
juice pulp and all - just the juice from it. A very labor intensive anti-cancer regimen that he must do at least twice a day.
I really don't want to do it because Jim has to do things a certain way and it's enough to drive me crazy.
When he comes into the kitchen to tell me how to wash dishes - I leave the dishes for him to do and go
pull weeds to avoid screaming. Thank God for Zoloft - I keep telling myself - remain calm - do not yell.
I can handle peeling, dicing, slicing, steaming and baking anything but this juicing is a whole nuther bunch of
heavy machinery and means he is in the kitchen a whole lot more than before. Nothing else can be done in the kitchen while juicing
as it seems to take up the whole kitchen so after everything is peeled - I am outta there and only go back in to
clean the kitchen - again. So it must be all these arm movements that makes my tracker say I am walking 5 miles a day.
I tried to get Jim interested in the V8 version of green juice but that is processed - he has to have all fresh organic
juice every single day. He just read about the black seed oil
and raw honey cancer cure and is probably going to order that from amazon next.
Tomorrow I plan on getting Jim on the phone to pancan.org to ask about free genetic testing and
targeted immunotherapy clinical trials.
At least there are no more doctor visits this week so maybe I will be able to get over to see my mother.
ROUGH NIGHT - 3/20/17 Monday Jim woke me up at 2:30 am to tell me he was in a lot of pain
and was thinking of taking Omaprazole again so I handed him the lighter 20 mg kind. He feels like the pain
is in the same place as when he had the bleeding ulcer from not taking Omaprazole for a year
after his surgery. He said he had taken a Tramadol
about 4 hours before after the pain first started and I suggested - take a hydrocodone. He has plenty of painkillers but he
just won't take them. He is bummed out the Gum Mastic and Zinc Carnosine are not working to replace the omaprazole
- we have gone thru this before. He followed my advice and slept the rest of the night.
After I got up this morning I put the 20 mg Omaprazole right next to his water
and said - take this right when you wake up - as you have to take it on an empty stomach. He says he is still feeling
residual pain this morning but not that bad. The natural remedies may work but he has only been taking them for 4 days
which may not be enough time to feel a difference. Hard to believe it is already 10:30 am - time flies by in the morning
when I'm working online. I really enjoy my quiet time and a cup of coffee in the morning as I try to get all my computer
stuff done right after I first wake up.
Whoops spoke too soon GP visit Tuesday at 9 am as Jim thinks he needs more carafate and can't get it refilled cause he
no longer sees the dr that prescribed it ages ago. He has plenty of Omaprazole so he really doesn't need it...I think
he just likes going to see the NP - she's a looker - and a good listener which is what he needs these days. I can tell
when we go there his actual Dr is avoiding him cause he knows there is not a damn thing he can do.
He decided to rush off to Debbies right after he ate breakfast to get the
black seed oil
and raw honey and started taking it
as soon as he got home. He no longer does baking soda and molasses. 10% off at the Halifax Thrift store today so he got
himself more cute little cat figurines and books...that got him in a good mood and he felt better this morning.
He had a nice phone conversation with the pancan rep before we left about finding him clinical trials but she admitted that most include chemo.
After we got back he also talked to the guy that did his genetic research at Shands, he emailed the report from back in July 2014 that they did
so we can send it to Foundation One to show them what was already done. He is still able to take the Gum Mastic and Zinc Carnisine
along with the 20 mg Omaprazole - although it seems a bit too much of a good thing. Kevin caught some fish so he decided
to have that along w.boiled eggs instead of juicing...much easier - or maybe its because Kevin was cooking so no room
to do juicing at the same time. It's nice to have a break from the juice routine.
Was just told to research
Sulforophane which comes from the cruciferous vegetables he is juicing - you can also get it in capsules so may
look into that.
Thank you Desiree the NP - 3/21/17 Tuesday Jim had me working on his new mini laptop at 1 am
and I gave up and let him use my laptop and he finally got done writing a letter to a long surviving
pancreatic cancer patient named Kathy by 2 am as a reply to her email. I do not trust him to use my laptop by himself because he has ruined so many of his own- he has let
the cats sleep on his computer and picks them up by the screen and sometimes accidentally steps on them.
So not getting to sleep until 3 am I told him - go to your GP by yourself - as it was nothing crucial and sure enough
as I predicted he got to talk to Desiree. I am so glad he was bending her ear all morning and not mine.
So I had a nice peaceful morning cup of coffee and got plenty of work done - even saw a hummingbird around the red hibiscus
for the first time ever here on the patio. Time to put out a hummingbird feeder. Jim crashed until 2 pm for lunch and
after having his soup and fish fell asleep again.
I truly doubt he will have enough energy to do juicing later but we shall see.
I did do hours of research on Sulforophane and he would get more of it from a supplement than juicing and it seems
to me that is what the green juice is all about. See this very long video to learn about it:
Jed Fahey, Sc.D. on Isothiocyanates, the Nrf2 Pathway, Moringa & Sulforaphane Supplementation
JIM IS NOT GETTING BETTER - 3/22/17 Wednesday
Jim says he is feeling worse, he has that yucky weak feeling again, lost weight
- not so much pancreatic pain so it's not something
that painkillers can fix... until the pain starts in the evenings. He woke up early today and as soon as I got
back from grocery shopping he sat and listened
while I made calls to Shands to ask about their clinical trial...still waiting to hear back about that.
Also called a trial outfit out of Sarasota. Pancan sent us a list of clinical trials to call about but most require a tumor
biospy which he refuses to have done. He does not want to make things worse by poking at it as he thinks a biopsy will cause it
to spread or he could end up with internal bleeding.
He is feeling so bad he says he doesn't think he is even going to make it to his June 6th Petscan.
I told him it is probably too many of these supplements making him feel sick and he just says - no it's the cancer.
He could still do chemo if he wanted to but he gets mad if I even mention it - absolutely refuses to do it
as he knows it will make him feel a whole lot worse and as weak as he is would probably do him in.
We are also waiting for this new supplement with Sulforaphane in it. He really has to push himself to even do 1
green juice a day. He says he eats as much as he is able but is still losing weight from malabsorption. He slept most of the day.
I got myself a climbing rose for the back fence and some rooting powder to see if I can propagate any of these roses, put
up a hummingbird feeder next to the red hibiscus to see if that works. Beautiful weather - wish he could enjoy it.
LEMON JUICE & BAKING SODA - 3/25/17 Saturday Jim just got his new supplement in the mail with
Sulfurophane in it yesterday and started taking the 2 tablets a day with meals - tiny tablets - easy to swallow.
This will replace doing the green juice but he still has to use up about 20 lbs of carrots so will continue w.
carrot and green apple juice. He also started taking 2 teaspoons of organic lemon juice concentrate mixed
with 1 teaspoon of baking soda in a cup of water as he read that might kill cancer.
Maybe something's working because he just got up early and went for a walk after breakfast,
even though I saw him awake at 4 am reading. I predict he will go back to sleep till about 2 pm now.
Finally got to visit my mom yesterday and brought home some plant cuttings to see if I can get them to start.
She made homemade cinnamon rolls from scratch and they were so full of sugar I could hardly eat one as I have
cut way back on sweets. Mom has the worst diet but made it to 82 so how long you live seems to be all about genetics.
If diet and exercise helps at all I should live to be well over 100 - was thinking of doing the telomere test
on teloyears.com but will wait till more companies are doing it as I'm sure this new technology will get cheaper.
They also got bad reviews so not sure I would trust their results.
I also re-read Jims genetic test from 2014 and it does say that he has a variant mutation of a gene that
after I researched it - has been found to be a precursor to breast cancer and pancreatic cancer
- it is called ATM C.5071A> C VUS. ATM mutations in hereditary pancreatic cancer patients
His tumor was tested back then for all the main pancreatic cancer genes:
ATM, BRCA1, BRCA2, EPCAM, FANCC, MLH1, MSH2, MSH6, PALB2, PMS2, PTEN, TP53 and the ATM variant was the only one
that showed up. They dismissed it at the time as not enough was known about it but I looked up that exact gene online, as shown in the above link,
and it says ATM variants show up as precursors to breast and pancreatic cancer. I sent a copy of this test to
his relatives and I feel the adults with children on his mothers side should all be tested. Even if you don't get
cancer you can still be a carrier of a gene that you can pass onto your children and their children and so on and so forth.
We are waiting for Jims radiologist to recommend to Humana the Foundation One genetic testing - his request will have to
go to the GP first and then get sent to Humana for approval. I told Jim he should just get this $5800 genetic test done
because according to Foundation Ones website it takes 60 to 90 days for the insurance company to approve it.
Right now he prefers to wait to see what they say in a week about approving it.
Herxhemier Reaction? - 3/26/17 Sunday
When you feel worse after taking immune boosting supplements...
also known as Herxheimer reaction it is an indication that the supplement is working.
This results from a large amount of dying 'bad' bacteria that your body has to work to eliminate.
He still does the Gerson Therapy coffee enema at least once a day in the evenings to cleanse his liver.
For those that don't want to do coffee enemas adding in liver supportive supplements like Milk Thistle
and Calcium-D Glucarate can be helpful, as well as can Kidney -supportive supplements such as Goldenseal,
Red Clover, or Dandelion root. Die off reactions are usually over within the first 3-5 days, though
for those with heavy infections they can drag on.
The Herxheimer Reaction is a short-term (from days to a few weeks) detoxification reaction in the body.
As the body detoxifies, it is not uncommon to experience flu-like symptoms including headache, joint and muscle pain, body aches, sore throat, general malaise, sweating, chills, nausea or other symptoms.
So Jim says he may not be feeling well because of the supplements and the many anti-cancer cures he is taking or
it could just be the cancer still growing on his pancreas. We won't know for sure until he can get another petscan.
His CA19 score was only 30 on March 13th - so that is useless and his bloodwork has not changed much since
December when he had no tumor at all on the Petscan-actually it had improved some in March.
June 6th is the soonest we can get another Petscan done as they are only allowed every 3 months. We both understand why the insurance company does not want to
pay the $3500 more than every 3 months when he gets a petscan done...just wish it could be done sooner.
Calling About Clinical Trials - 3/27/17 Monday
I called last Thursday about a PD-1 Blocking Clinical Trial about 2 and half hours away. It uses Opdivo
which is given by IV along with other cancer killing drugs. It is normally used for small cell lung cancer and melanoma
but they are now testing it on other cancers in trials. The drawback with PD-1 Blocking drugs is that they can cause your immune system to mistakenly
attack good cells too. Immunotherapy clinical trials also only have a 15-20% success rate. When they work - they work
very well - when they don't - there are no results or bad results (they can be fatal). So now Jim needs to decide if he
wants to take a chance on these types of clinical trials or do nothing and take a chance on his holistic approach.
The side effects from Opdivo are similar to that of chemo but more unpredictable. As your immune system kills the cancer
you can have similar reactions as mentioned in the paragraph above. He would have to quit most all his supplements to
do this trial. So if it doesn't work it could weaken his immune system further.
I called about this trial last week and was hoping to hear back right away - no call back so will have to call again.
There is a long waiting list of people with all different types of cancer waiting to get into clinical trials.
It can takes weeks of going back and forth and waiting for approval to get into them.
I will also be calling about similar PD-1 blocking clinical trials as they don't require genetic testing.
Yervoy®, Opdivo®, and Keytruda® are the brand names of these checkpoint inhibitors - they also go by many
other names - you will have to do a google search to find those names as they are harder to spell. Immune-Modulating Cancer Drugs
They are based on an immunotherapy drugs that blocks the PD-1 an enzyme so that the bodies own T1 cells can recognize the cancer and kill it. What is the Science of PD-1 and Immunotherapy? At the Bedside: CTLA-4- and PD-1-blocking antibodies in cancer immunotherapy
There are IV forms and pills forms of these treatments.
After learning of the side effects and possible bad effects of these drugs, which to me are just another form of chemo,
he now has to decide if this is the route he wants to take.
Or he could wait for genetic testing and find something more targeted towards his particular type of tumor.
I did find a clinical trial based on genetic testing in Orlando but it seems they require fresh tumor material
and thus a biopsy of his present tumor. I plan on calling them to see if they can use the tumor material from his whipple
2 years and 9 months ago. They will do genetic testing on the tumor for the particular drugs they plan on using but if his
tumor does not meet their criteria - he will not qualify for their trial. At least he will get a free genetic test
out of it - but I know he will not go for a new biopsy so am hoping they will accept his first tumor material.
I had read that even after genetic testing the majority of people are directed back to chemo as their best option so I
do not have my hopes up for that.
I will pray for Gods guidance to point him in the best direction.
Waiting for Calls, Making more Calls - 3/28/17 Tuesday
After not having calls returned from last week I started calling back the same trials and calling new ones.
Finally got the one in Orlando to give Jim an appointment to see one of their Oncologists on Monday at 1 pm
...now trying to get that first consult approved by Humana as he will have to quit his oncologist at Mid Florida in Deland to switch over.
Had to get tax id of UF Orlandos particular Drs office to give to GP to speed up approval process...otherwise just a
a first time specialist visit with an oncologist can cost $700 out of pocket versus $40 copay.
Spent a few hours at his Radiologists office having her make copies of all his records to take to them
and she also faxed 36 pages of his last 6 months of records - she is golden. They actually wanted everything
from 2014 onwards but that is hundreds of pages so she informed them I would bring printed copies otherwise
it would tie up their fax for hours. I am going to find a way to put all these records on disk someday to Fedex
or email as a zip file. Knowing how busy doctors offices are I am sure they would not be able to unzip the file
or access the disk and it would just sit there - sometimes the old fashioned way of faxing things get more attention.
I made sure to send all the pretty pictures of his Petscans and their reports and most recent bloodwork with the dates
written across the top in order by date with the cover letterhead from his Radiologist.
Stopped at Jims sisters house on the way home and they took us out to eat - Jim had a hamburger and fries and some of mine too...
he has a good appetite - just limits himself to his special diet and cheats once in a blue moon. Even though
he takes his digestive enzymes he starts having pain sometimes right after a restaurant meal and has to get
home, take a pain pill and rest. He also decided to go back to taking Omaprazole 20 mg twice a day.
No calls back from other trials and since he can only go for one at a time I am not calling them back yet.
I did find out you don't have to pay for these clinical trials - they are paid for by the drug companies but the initial
consultation to see if you meet their criteria is on you to pay for or get your insurance to pay for it.
So this trial, if he meets the criteria involves him getting a biospy for his tumor, if the genetic material
has the right genes then he gets a custom made drug trial - otherwise they send him on his way with more information
about what his tumor is made of and hope getting the biopsy does not make it grow or spread - no guarantees on anything.
You roll the dice, you take yer chances. All of the trials are like that - you hope you
get in a good one. It's not like you have much time to wait - as you can't get into them if your health deteriorates
too much - they want fairly healthy patients that are still walkin and talkin. From my cynical point of view they
prefer you don't die on them before the trial is over - makes their stats look bad.
Joined a new cancer forum that covers more types of cancer and clinical trials: Cancer Forums
Found a story that helps with understanding the dying process written by a hospice nurse - very educational - glad I read it Crossing the Creek
Waiting for Humana approval for Monday new Oncologist visit - 3/29/17 Wednesday Molecular Profiling is a new term I just learned today for when they do a genetic test on your tumor material.
Read a hopeful email from Pancan about a lady that did well after molecular profiling so that made me feel
like we are going in the right direction.
Waiting is the hardest part. Jim slept to 3 pm then went for a walk today after he ate. He had a rough night
after eating that hamburger and fries yesterday-took 2 pain pills and was saying - I'm not gonna do that again...
next day he ate half a hamburger from the restaurant after his fish and veggies - it was just too good...
blame it on the fries.
I also learned from the genetic counselor at Shands that if you ever get genetic testing be sure to be tested for
PD-1, PD-L1, EGFR and ALK. There are more clinical trials out there for people that show those markers
and more opportunities for people that have already had testing done on their tumor.
She also named many other genetic testing companies we could call such as:
Caris, Neogenomics, Pathgroup, Tempus. So now I know what questions to ask the dr like what are they testing for and what
company do you use.
Yippee - Humana approved Monday Orlando Oncologist visit - 3/30/17 Thursday
We just jumped thru Hoop #1. Fastest approval ever - I attribute this to constantly bugging the referral lady at his GP's office.
Jim is still sleeping until 3 pm but at least he tries to walk outside once a day and is eating well.
He is still doing his carrot and beet juice once a day.
I told him - you had better work on putting on weight now cause you have to be in shape to get approved
and deal w.the long drives back and forth. At least we don't have to go to Gainesville or Tampa - yet.
I already have trials picked out in other places as a backup plan. First we have to go for this consultation
and then the Dr will tell him if he qualifies.
Planted a bright red orange climbing knock out rose by the fence in the hopes
it will attract back that hummingbird...gonna get some trumpet vine for the corner or maybe a firebush. Will see how this knock out rose
takes the heat - first time I've bought that brand. I read you can even hang up artificial red/purple fuschia baskets
- too hot to grow them on this patio. The prickly pear cactus in the pots isn't doing very well - I think I overwatered them but
the peices in the ground that I never watered are doing great so I guess I will be putting them all in the ground.
Found out hummingbirds like cactus flowers too.
Monday Orlando Oncology - Not good News 4/3/17
Well that was fun - our first time going to the ORMC FHU Health Cancer Centre - nice crowded parking garage - lots of traffic
- got a little lost finding our way back to the car as we are not used to city living.
Beautiful facilities, lots of big windows, plenty of comfy sofas, and marble topped counters to check in.
The Dr had his very own scribe that follows him around w.a laptop and a nurse that gets to talk to us after the Dr
and his ego leave - phew. I think he kinda went balistic when he found out Jim didn't do chemo - especially when I said
he made it 2 years and 9 months without doing chemo. I told him we could of gotten chemo in Deland- we did not come
all that way for chemo - we stated plainly on the application that we wanted into an immunotherapy clinical trial.
Problem is since Jim never did chemo they said he may not qualify. So we are waiting to see if the pharmaceautical
company will allow him in. He did have radiation so that may qualify him. They setup a return visit for Thursday but will
call us if we don't qualify.
Well she just called at 10:30 this morning and said he does not qualify
because he never had chemo. So glad I made an appt with Shands, Plan B, for the 14th to see if I could get him in to
a clinical trial up there. - have to call up there now to see if the trial has any openings before we go that route.
Well just off the phone w.Shands no openings and they said he would probably have to show he had chemo first - so nix that idea.
What sucks is you have to get an oncologist to order the genetic testing - you can't order it yourself and I have the names
of 5 labs that will do it. So I am going to call these labs to see if I can get prices on just 1 test for
PD-1, PD-L1 - this way if he does not have those enzymes in his tumor - the Opdivo/Keytruda most likely won't work anyways.
No luck on getting prices on genetic testing - you just have to get the test then they submit it to insurance and hope
they pay part of it - then apply for financial assistance and hope that pays the remainder. Jim does not like the idea of
getting genetic testing when each of these trials so far has said no based on him not having chemo...so will be much harder
to find a trial that does not require chemo having been done previously.
He is really bummed out and has been sleeping all day.
Waiting for calls and genetic test results 4/5/17 - Wednesday
Jims radiologist ordered Foundation One genetic testing on his tumor stored up at Shands so we should have
the results by next week as it takes 2-4 weeks and it's been 16 days so far since it was requested.
He didn't recall ordering it so I wasted a couple days researching genetic testing labs only to find out it was already done.
Mostly he is worried about what insurance won't cover as we had read it is a very expensive test and they won't tell
you ahead of time what it costs and what is covered. So I said - "just lay back and enjoy the ride" - referring to a quote from
a politician (Clayton Wheat Williams, Jr) who publicly said during the campaign a joke likening
the crime of rape to bad weather, having stated: "If it's inevitable, just relax and enjoy it".
Jim did not think that was funny - welcome to the club. There goes our Vegas trip that Jim was dreamin of goin on
but I knew would never happen.
Am still waiting to hear back from a few clinical trials to answer my question about whether chemo is required first.
Other than that - it rained quite a bit yesterday and the flowers are bloomin' and it's getting up in the 80's every day now
so soon the grass will be growin' and I will be mowin'.
Rough night 4/6/17 - Thursday
Early evening Jim took 2 tablespoons of Black Seed Oil and immediately had a bad reaction
- severe stomach pain - took a tramadol and hydrocodone and was still in pain till late at night...he was almost feeling like he needed to go to the hospital
but finally the pain subsided. It was his own fault taking twice the amount they say to take. I told him no more
of that stuff...hopefully he learned his lesson. He missed eating his regular dinner because of it so probably
caused himself more weight loss. So he is back to taking 20 mg Omaprazole a day and has promised no more oils -
he doesn't have a gallbladder and gets the same reaction when he eats french fries. Too bad cause Ed was going
to take us out to eat. So now he says no more organic hamburger for awhile either,
so it's back to fish - luckily we have plenty in the freezer cause Kevin has been catchin em.
I emailed Moffitt in Tampa to ask if they had any clinical trials that don't require the patient to have had
chemo first - no rush cause we have to get the Foundation results first before we go anywhere else.
NANO KNIFE 4/14/17 - Friday
Got a call early this morning from Orlando Health Cancer Center that turned us down for a clinical trial
- instead they referred Jim to a new surgeon that does nano knife so going for a consult on Friday the 28th
to see if he qualifies. They will probably schedule him for a CT scan so we get to see if his tumor has grown
or stayed the same. So to me things are looking up. We both thought SBRT radiation and nano knife were the same
thing but apparently are not. You can read more about it here:
Nanoknife Ablation Doubles Survival in Pancreatic Cancer
No calls back from Moffitt yet and still waiting on genetic test results. I called and they just got the tumor material last
Friday from Gainesville so takes 12-14 days for them to get results from testing.
Planted a small orange trumpet vine along the wood fence - adding 1 new plant a week trying to attract hummingbirds
to the back yard in the hopes Jim will be able to see one outside his bedroom window someday.
He believes the baking soda and molasses is helping as he started doing that 2-3 times a day again and feels like he has
more energy in the late afternoons. He actually got up and motivated enough to go for a walk a couple days in a row.
He even went to walmart on his own late in the afternoon, by that time of day I am warn out and don't like going
anywhere in the heat. The amazing thing is he actually bought stuff on the list I handed to him - I was shocked
that he remembered to do that. Will wonders never cease. For Easter I'm going w. my mom to mass as usual then lunch
afterwards - Jim sleeps too late to make it over there on time. His Niece invited him for lunch in Ormond so if he
feels up to it he may drive up - we shall see.
A customer and friend of mine that has been battling a brain tumor for many years just sent me this book: Cancer-Free: Your Guide to Gentle, Non-toxic Healing by Henderson, Bill (2007) Paperback
Cryonics 4/17/17 - Monday Cryonics is an interesting topic...I told Jim that if he gets frozen for 20 years
waiting for a cure then I will be 10 years older than him when he gets thawed out...he says - I won't want to be w.
an old biddy then. I found the most interesting thing was that they freeze you upside down w.liquid nitrogen
and top off the storage containers as needed. The reason they freeze you upside down is if they are not able
to get enough liquid nitrogen delivered possibly because of civil unrest - then your head is the last to thaw out. Supposedly
there is enough in the tanks to last 6 months before it becomes an issue. Now you just have to consider where would you live
once you get thawed out, what would you do? And of course would your own soul stay w.you or could your body get taken
over by some other consciousness. Cryonics.org is a very interesting non-profit organization, all family owned and
grandparents are already frozen and they are very Christian people.
Cryonics & Christianity
Cryonics already has over 1000 members and are continually adding
to their facilities. Only $28K for a lifetime membership to get frozen and you can use your life insurance to pay for it.
They already have young people signed up and some people have even frozen their pets to be with them. The gov't is already
experimenting with suspended animation in order to send astronauts to Mars as that would be a 3 year trip. Supposedly in 20
years we will be able to safely thaw people out. The last person frozen w.the most advanced technology will be the 1st
person to be thawed out...so best to live long enough for technology to go thru that learning curve first. It is not just for
people that have an incurable terminal illness but also for those hoping they will be able to reverse the effects of aging
at some point in the future. They already use this technology for storing sperm, embryos, blood and are beginning
to experiment using it for organ preservation for transplants. I wonder if the states that allow euthanasia will allow
people to be frozen alive because now they only allow people to be cryonically frozen soon after death.
Euthanasia is illegal in most of the United States. Physician aid in dying (PAD), or assisted suicide,
is legal in the states of Washington DC, California, Colorado, Oregon, Vermont, and Washington state;
its status is disputed in Montana. You can google it - it begs the question - can Euthanasia be used before being frozen
to make sure that the body is frozen in it's best condition possible at the time of death.
Will be an interesting growth technology to keep an eye on. There are other companies in the US like
Alcor that charge $200K for the same thing it seems.
Oh Holy Hoses 4/21/17 - Friday
After much ranting Jim finally hacksawed the old hoses off and put new ones on this week...I had cut and repaired
them so many times over the years I just quit and let water go everywhere - I couldn't take it anymore.
Had I known about the Lowes 3 yr warranty I would of returned them and never fixed them...will never fix another one
you can bet on that.
Humana finally approved Jims Dr visit for the 28th. He was not feeling well enough to go anywhere Easter Sunday.
I feel truly blessed that the neighbors had a magnificent wonderful Easter dinner right next door
- just wish Jim could of felt well enough to be there.
He still spends most of the day in bed, eats all his meals in bed and tries to keep his weight up but he says it is
down to 126 lbs.
He sometimes gets energetic and goes to Publix or Lowes. We usually don't turn on the AC until mid May but he decided
this year to put it on early. I was totally prepared to sit and sweat in my bathing suit indoors
while sitting still and was almost disappointed when he put the AC on so soon. Still waiting on genetic test results
- been a month since they were ordered - so much for the 2-3 week turnaround time they say on their website. Moffitt
still has not called at all - I am not going to bother with them and hope we don't ever have to go there.
I did read that metastasis w.out ascites is treatable w. SBRT as long as it is not in the same place as before and
same w. nanoknife.
So there are other things that can be done if cancer spreads before we have to look at drug based clinical trials.
Good news is if they don't get it all removed the 1st time w.nanoknife they can actually go back in and do it again.
Unfortunately Jim is still saying he feels weaker and has pain every day later in the afternoon.
I am glad that he quit taking baking soda and mollasses but I was hoping he would feel better after he quit taking it
- nope, still the same. He still refuses to take more pain pills - such a martyr. I did manage to create a 2 page
easy to read report w.his medical history, meds and stats to hand to any emergency personnel. I had gotten him a medical
id bracelet w. a flash drive w.his medical history on it but he won't wear it. He refuses to wear his orange whistle,
or a Medic alert necklace...but loves to ring that bell next to the bed.
Says he wants a remote control that will zap me to attention like a tv remote. Hmmm - those hoses are good for more
than just waterin plants.
Double Bummer Day 4/26/17 - Wednesday
The cranes that were camped out in front of Jims for the last 4 years lost their 2 babies over the last few days
- probably to alligator, hawks or both - after the 1st one disappeared they would not even sleep on their nest
- tried to live on the other side of the lake and got run off by other cranes - very sad as they had no place
they felt safe so they left today after much flying around and crying out. The paramotor plane noises were really
upsetting them this morning as they were trying to stand quietly and mourn near their nesting area.
Jim got his blood work today - CA-19 skyrocketed from 20 up to 69! Highest it has ever been. Platelets dropped to 109.
His Foundation One results (report was much shorter & less detailed than I'd expected) showed he has 2 genetic preponderances that together to not bode well.
KRAS Q61H & TP53 Q100. KRAS Mouse Model p53 Mutations Mutations in the p53 tumor suppressor gene represent the most common genetic lesions in cancer Multiple KRAS mutations in pancreatic adenocarcinoma
After much research today the suggested clinical trial of Cobimetinib and Trametinib does not seem like it will help much.
Am really looking forward to him getting the nanoknife asap.
One thing I did find out was that the gemcetabine chemo they were trying to push on him
would not of worked and could of made things worse for him w.these mutations. So he is happy he made the right decision
not to do that particular chemo. EGFR inhibitors do not work for his genetic mutations. He is trying to
put on weight and has taken a liking to eating spinach and cheese pizza - first processed food he has eaten in ages.
Gonna take him to the BOGO at Beefs Thursday.
Bounced Around Again 4/28/17 - Friday
Been super busy all week doing work for my customers - sorry haven't posted much.
We saw nanoknife surgeon in Orlando Friday afternoon - they are not able to do it
as they don't do laproscopic - only cut you open like a fish so they referred him to
Miami Univ. - they were nice enough to send his 20 lbs of med records there but Miami will have
to go over them before they will give Jim an appt.
Problem is because he did not do chemo - he may be turned down.
This Orlando Dr said typically you must do a full regimen of chemo first before being considered for
any clinical trials...really that is what the last Dr said that referred you - you could of told us this over the phone...
what a wasted trip...so glad your hosp made an easy grand off his insurance again.
Jim is very pissed off as he got his bloodwoork and it shows his CA-19 score is up to 69
highest it has ever been - this means the tumor is growing.
His platelets also dropped to 110 which means he is at higher risk of internal bleeding.
He also got his genetic results which show he has 2 bad gene mutations that there is not a damn thing
he can do about it - it even says on the report that the chemo they gave him back in 2014 would be ineffective.
So it is a good thing he did not do it. The problem is these drs think he should of tried a stronger chemo
called Folfrinox - well if he couldn't even handle the weaker chemo the stronger one probably will kill him.
He weighs less now then way back then when he had first chemo done in 2014 and that put him in a wheelchair.
So if he tries to do this stronger chemo - it will probably do him in is the way he feels.
So all we can do is try to get Miami U. to do nanoknife...have to fax them a form today
and then wait for them to review his medical records and call us for an appt. I will not be holding my breath on that.
Will still be looking for clinical trials that say they are for chemo naive patients. Sigh.
My 2 cents about genetics is - "no matter how much carrot juice you drink - you can't change your eyecolor" so how do
you expect to change crappy genes that are still making you sick by eating healthy. I have more to say on the subject
but it is not fit to print...or I have not come up with the right words. All I can say is -"it's Time for Pizza and Beer".
We All Know People Like this 4/30/17 - Sunday
They eat and drink anything they want, well into their 80's and are getting around just fine. I have met people that
are in their late 80's that still drink and smoke and eat crap...it's genetics - not what you eat or do to your body.
Well I guess you could say they would live even longer if they treated their body right.
It's just really hard to watch them suck down a Scotch on the rocks and have a smoke and eat fried foods at the local
Eagles at 90 and not get a little jealous.
You know the saying - "only the good die young". So the younger you die does that mean the gooder you are or were?
Nope cause there are a whole lot of youngsters dying of cancer that never drank or smoked - it's all genetics.
So I am not on that bandwagon that says if you eat healthy you will live longer...say that to a kid in St. Joes.
I have read that if you were descended from northern european royalty that interbred to keep the money and
royal blood line in the family than your chances of inheriting hemaphelia were higher...who is to say what else
that includes - one can only imagine and they are just now admitting to battling higher cancer rates in England.
Well I can say I have also read they bred for light skin and red hair because it
was considered rare (a recessive gene)
- so that would explain why people w.
have a tendency towards melanoma and many other health issues.
The Curse of the Red Head Gene of Northern Europe, England, Ireland and Scotland
Well Jim was descended from King Charlemagne and he had red hair so their's your first clue. So funny -
I remember my mom bragging about being descended from the Earl of Marrs in Scotland
- Thanks mom - it's nice to know I came from a family of royally incestuous overbearing assholes that probably
enslaved a whole lotta people - yes I am sure they had their good qualities but... All I can says is - genealogical history has come back to bite everyone in the ass - LOL.
According to the book "Holy Blood Holy Grail" - King Charlemagne was descended from the blood line of Jesus as was written
about also in "The DaVinci Code" - Jim was happy to hear that. Of course I have also read articles refuting it but
I certainly won't mention that to him. More to be posted here later.
On another note I discovered that Quinine (bark of the Remijia tree also known as Cinchona) was being used in mouse genetic
experiments to kill the KRAS gene in pancreatic cancers along w. other similar anti-malarial drugs like vacquinol-1 and
artesunate. So I told Jim Drink tonic water for the quinine and while your at it get some Gin cause it has
antiseptic anti-bacterial medicinal qualities.
well he found too much sugar in the Quinine so didn't get any - although they do have the diet kind w.no sugar
but it has aspartame.
He could order the quinine extract on amazon and put it in just plain water - but it does have a blood thinning effect
which for him would not be a good thing. As Donna said - having low platelets may be what is keeping your tumor
from growing too fast so that could be what quinine is based on. Quinine derivative used on KRAS
Oh well I tried. It could of been the majic bullet but we will never know.
No more Carrot Juice 5/4/17 - Thursday
Jim wants everyone to know that even on his Foundation One report it said Gemzar chemo (gemcetabine) was not effective
on his particular type of pancreatic cancer biomarkers...I will have to type from the report when I get around to it
but I also found this article. I am of course giving copies of the report to all his relatives. Gemcetabine ineffective on pancreatic cancer
Quote from page: "They reproduced this treatment effect in a genetically engineered mouse model of PDA and found unexpectedly that tumor regression required macrophages but not T cells or gemcitabine. CD40-activated macrophages rapidly infiltrated tumors, became tumoricidal, and facilitated the depletion of tumor stroma. Thus, Beatty et al. (2011) concluded that cancer immune surveillance does not necessarily depend on therapy-induced T cells; rather, their findings demonstrated a CD40-dependent mechanism for targeting tumor stroma in the treatment of cancer".
He has tired of carrot juice so even though I cleaned, wrapped and bagged about 10 lbs of the carrots
that had not rotted he has no interest in them. I may figure out a way to slice, bag and freeze em if that will work.
He still takes most of the same nutritional supplements, eats organic meat/potato & protein shake
but has added spinach and cheese frozen pizza to help keep up his weight. He has also tired of the vegetable soup.
I think he has come to the conclusion that you can't beat the genetics. He also has some unusual variants
showing he has an ATM 5169R breast cancer gene,
LDS-2 (Loeys-Dietz Syndrome) gene
(that causes early onset of GI issues),
NF1 A753T Neurofibromatosis gene (which explains his scoliosis and growth problems growing up)
and FAS P183L faulty cancer killer gene (meaning it won't stop tumor growth like it is supposed to).
It will be interesting in the future when people get full genetic profiling after they are born like in the movie
I also came across a guy named Bob on the cancerforums.net that did all the required standard treatments of chemo,
SBRT radiation and nanoknife on his tumor in the exact same place as Jim (locally advanced in the pancreatic bed)
after Nanoknife it returned 6 months later
and it is now 3 cm so he has decided not to suffer thru any more chemo and to keep an eye out for clinical trials.
Bob also sleeps 14 hours a day...so sleeping alot is common with pancreatic cancer.
(so I will be keeping an eye on Bob's posts since he is a few steps ahead of Jim.) So reading that tells me
that even the harsher chemos of Folfrinox, 5FU, that Bob did - do not work. You see the problem with KRAS genes
is they build a Biofilm wall around the tumor that the chemo cannot penetrate.
We are now still waiting to hear back from Miami to see if they will accept Jim for Nanoknife.
Just got off the phone w. UF Orlando to find out if they sent all of Jims medical records to Miami and they finally
got that done yesterday but did not send the copies of the CD's - so now I have to wake him up to let him know
they are still waiting for the Petscan CD's. So we will have to go to FL Hosp in Deland to get them to send copies
or we can Fedex them ourselves - will see what he wants to do.
The visit still has to be approved by Humana so I can see this dragging on to next week.
If you want it done - do it yourself 5/8/17 - Monday
I found out on Thursday that UF Orlando Cancer Center it turns out did not send all of Jims medical records to Miami
- only the ones from when we visited with them. Even though I had brought them 10 lbs of records
- those were not sent to Miami because they were from other institutions - even though they told us over and over again
after I asked them many times while we were there - that they would send "ALL" of his medical records to Miami UF Sylvester.
He was referred there for a second opinion Nanoknife because at Orlando they did not do laproscopic Nanoknife. Apparently
the word "All" was miscommunicated as I found out each place can only send their own records to a new place- this means
I had to go to his radiologist and get them to fax only the records pertainting to his visits with them, and his GI dr.
So I had to run around like a banshee Thursday to all his Dr's in Deland to get them to fax the most pertinent recent records
as well as Priority Mailing all the 10 lbs of copies from Shands and CD's of his Petscans. The package I sent was received
and signed for on Saturday morning but here it is Monday afternoon and after calling this morning and afternoon
- they can't seem to find them even though the tracking number shows they were signed for there. So more waiting and calling
and waiting to see if this new place in Miami can get their S# together. Then when they finally do get all his records
together for the DR to see - he will make the ultimate decision if Jim qualifies for a Nanoknife procedure.
Until then all we can do is sit and wait for them to call with an appointment and then that appointment just for a consultation
has to be approved by Humana which takes about a week to get that done. So he is a long ways off from getting this
Nanoknife procedure, to remove this recurring tumor, which he desperately needs because it is growing fast.
In the meantime I visited mom on Sunday and told her I probably would not make it for was finally able to get him to remove himself from his man cave long enough so I could change the
linens, dust and vacuum. He sleeps most of the day and when he finally wakes up is ready to eat so I have a protein shake, boiled eggs
and his organic lunch/dinner already made around 2-3 pm. So this is my new routine - get everything made ahead of time
so it is ready when he wakes up. Asking him if he is ready to eat is a waste of time because he sleeps so much. Lots
more pain so he is taking more pain pills and is very agitated when he is awake so wonderful to be around.
Still no Miami Appointment 5/12/17 - Friday
Miami finally found the medical records and put them together with all the faxes by Wednesday afternoon, then told me they
would call with an appointment after the doctor looked at his records - here it is late Friday afternoon - still no call.
Jims is still sleeping all day and doesn't eat much - no appetite - which is indicative of his slowly deteriorating state.
Although suggested by numerous people he will not even consider medical marijuana or oils made from it to stimulate his appetite because he is so straight.
It's tough enough just to get him to take a pain pill...and he usually waits until he is in pain before he takes one instead
of taking one every 6 to 8 hours.
He is able to drive to Publix or Debbies Health Food and walk down the street and back but I know he has lost weight
since his last dr visit.
He is slowly wasting away because he won't eat much and doesn't get up and around enough so what little is left of
his muscle mass is pretty much gone.
He gets mad at me if I tell him to eat more so I just don't say anything if he doesn't finish what is on the plate
as I read that causes distress.
He does not want to go out to eat even when someone offers to buy because he doesn't feel like sitting in a restaurant.
He prefers to eat in bed
and then just read and watch tv and go to sleep. Some days he won't even eat his single meal a day and will only drink
1 protein shake. I have been doing plenty of reading so I know what to expect in the long run. The Dying Process,
One thing I learned recently is that on the applications for procedures and clinical trials it asks what is your ECOG
which means "Eastern Cooperative Oncology Group Performance Status". It asks you to rate yourself as a patient
from 0 thru 4 with Zero
being in great shape and 1 being able to do strenous activity, office work and housework. Level 2 means you are ambulatory and
capable of self-care but unable to carry out work activities and up about 50% of the time. Level 2 is where Jim is at but I
told them he was level 1 because he doesn't like doing housework.
I read that in order to get into Clinical Trials - you have to be at Level 1 or better. So that is a heads up
to any of you PanCan people looking for trials. In other words they figure if you are still in that
great a shape after chemo then you are a good test subject to go thru a clinical trial regimen. At this point I don't see
Jim being able to get accepted into a clinical trial because like they told us in Orlando - he had not done the standard
of care chemo first. So all we can do is wait to see if Miami will call to give him an appointment for nanoknife. They also
have clinical trials down there too so maybe he can get into one of those- we shall see.
Luckily I have been staying very busy online working on customers
new websites so that has been helping to keep my mind off things. Still no hummingbirds but I have had plenty of flowers
Hurry Up & Wait - 5/15/17
I can't believe I rushed to get Jims medical records shipped down to Miami. It almost seems the powers that be
do not want him to get this surgery because things keep happening to put it off. Even though his records arrived on the 6th - they
could not find them until the 10th. I also found out the radiology office did not get his consent form that
I emailed on the 6th in their email so I had to resend it on the 10th so they could fax his stuff
...later she found my email in her spam folder.
Then I called Miami today and it turns out the surgeon wasn't even in late last week so he never looked at the records
anyways...he may have gotten around to it today - who knows. Jim says he's itching but I told him that is just the tramadol
causing it - he hasn't turned yellow yet. At least he agreed to eat pot pie to help him put on weight. I did manage
to chop up and freeze that 10 lbs of carrots so I have plenty for cooking.
Still Trying to get Nanoknife - Wed. 5/24/17
Well Miami called Monday afternoon and told Jim he did not qualify for Nanoknife because the Doctors felt he
had metastasis to his stomach...it turned out they never got the biopsy report from December when he had an endoscopy.
Even though I went over in person and told the medical records lady that I needed that report faxed to them back on
Thursday 5/4/17...even though he signed a consent form for me previously she would not give me a copy of what she
faxed so I had to assume she sent everything. They sent the endoscopy report but not the biopsy report.
That 1 page report proves he did not have any cancer at that time. So we rushed over to his GI drs office in Deland
and made them fax the report before 4 pm and checked by calling and leaving many messages to make sure they got it.
No call back all day Tuesday - Jim was screamin and fit to be tied and so was I putting up with him. Finally today
they called back and said Dr reconsidered and just wants him to get a 3 Phase w.and w.out Contrast CT Scan done here
and send that report to prove he has no metastasis. So we called his radiologist to ask if he could set that up...then
we have to wait for approval for it from Humana...I predict another 2 weeks to get all that done.
At least this gives Jim hope because after she told him No Nanoknife on Monday he was all ready to quit eating and just
lay there and die. On Monday after she told him the bad news - she did offer to have him go down there to see their
oncologist while he was screaming behind my back
that he was not going to do that so I told her I would talk to her later. I was all ready to get him to go down there
and jump thru their hoops cause I knew he would need another Petscan on their equipment. So all day yesterday I tried to
get thru to him that yes he would have to get another scan and maybe even another endoscopy and biopsy since the other one
was 5 months old...in order to prove to them he had no metastasis. They will not do anything if you have metastasis
to your stomach or ascites. So we shall see what this new scan finds...he was due for a new petscan anyways on June 6th
but getting Humana to approve it just to monitor him would of been tough as we were told they would only allow it
if he were actually doing something to change things...like chemo. Ever since March 6th when we found out he had
a local recurrence we have been trying and trying to get something done to no avail.
To make matters worse I made the mistake today
of calling Mao up in Jacksonville - they were more than happy to do the nanoknife - of course we would have to
prove to them also he has no metastasis - they were so nice on the phone - Jim liked that they didn't have an accent
he couldn't understand like the Miami people did. But when I called to setup an appt I found out they do not take
Humana Gold Advantage HMO at all...Jim was devastated as we had not heard back from Miami at that time. His GP told
Jim he would have to pay cash out of pocket at MAO and this is a $100K procedure. Phew - this has all been a very
emotional learning experience. I just like doing a journal in case Jim ever gets to the point where he wants to sue
one of these wonderful doctors and facilities for all his emotional pain and suffering
- which he mentions doing regularly. Or maybe this will just make a nice boring book. It's amazing how lively he gets
when he's pissed off - you would not even know at all he was sick if you saw him ranting, raving and stomping around
and driving real fast to get to that lady in medical records. He was ready to start giving her a hard time while we were
standing in line waiting...I had to calm him down and say - let's get this fax done first - then you can yell at her.
Going to get CT Scan - Thurs.6/1/17
Finally got Jims CT scan approved after much calling back and forth between his GP and radiologist to get that done
within 3 days because of the holiday weekend. Was surprised it was approved so fast. Won't have results till next
week. Then we can send the results to Miami and wait for their reply. Jim gets up around 7:30 and has his oatmeal
w.berries and makes himself pancakes - no syrup then goes back to bed till about noon - has his baking soda and molasses
or maybe a protein shake then falls back to sleep again till about 3pm. (I think it's just his bladder waking him up)
Then he eats maybe a small fish fillet or small organic hamburger and a few steamed
potatoes and zuchini. I have learned it's easier just to cook all the hamburger at once and then let him reheat it each day
cause he is not very good about waiting for me to cook something. When he gets hungry there is little forewarning
so have to get it in front of him fast or he loses interest or falls asleep. His sister came to visit Wednesday and he drank
his shake and fell asleep while she was talking to him...oh well at least he was awake for awhile this time while
she was visiting. He does not like to be woke
up if someone visits - I found out last time she came by cause he gets grouchy if I wake him up
so I explained to her I just let him sleep as much as he wants to.
CT Scan Report - Monday 6/5/17
No metastasis on the report so we mailed it to Miami today along w. the CD.
Strange though - this report - done by a different radiologist than before said:
"...there is a 4.7 X 2.4 CM mass, this measured 5.6 X 3.4 CM on the previous scan 3/6/17."
The previous scan report 3 months ago 3/6/17 written by a different radiologist said:
"The new focal area of hypermetabolism at the pancreaticojunostomy site measures approx. 1X1.4 CM."
Meaning the guy who wrote the report previously on 3/6/17 measured it wrong???
All this time it was way bigger and we didn't even know it!!!
but according to this most recent report today it has shrunk my 1 CM. So that's a good thing - Jim thinks it shrunk because
of the molasses and banking soda he is taking. He has also decided about a week ago to quit all anti-oxidants
because he read they actually promote the growth and spread of cancer. AntiOxidants Cause Metastasis My question is:
How could 2 different radiologists have such hugely different measurements!
I wrote to my customer that is a malpractice lawyer in AL and asked his opinion. I would sure like to be able to talk
to both of these radiologists but you are never allowed to do that. All you can do is ask your DR and he talks to them.
I'm sure that place in Miami is going to wonder - maybe they will be able to call and ask. Will call them tomorrow
to tell them the report is on the way. Jim was happy to hear that the tumor shrank but was not happy
to find out how big it actually was and still is. 5 CM is about the size of a golf ball...so it is only slightly larger
than that on one end.
On another note I made something different that I was hoping would add more calories - lentils w.rice and mixed sauteed vegetables
to go w. his organic hamburger...he ate it 2 days in a row - and then had some of my homemade biscotti made w.molasses and honey
instead of sugar to keep them as low on sugar as I could stand.
Jim is now afraid of Carrots - Thursday 6/8/17
All this new reading Jim is doing about antioxidants causing cancer to spread and tumors to grow has
now made him afraid of carrots. In one of the studies they gave the participants Vitamin A and their lung cancer got worse.
The link to the study is posted above in the previous post. So today he told me no more carrots because I have been serving
him a mixture of fresh cut and sauteed veggies w. his organic hamburger. I didn't mention to him that just about every
vegetable has vitamin A - but he says sweet potatoes are OK - because he is clueless. So until he finds something else
he shouldn't eat - I will stick w. sweet potatoes, zuchini, yellow squash, bell peppers, garlic, eggplant, mushrooms sauteed in coconut oil.
I quit buying celery because I couldn't find any but I think we are eating plenty of veggies as it is
- or at least I know I am. I said since oxidation is what creates more free radicals to kill cancer maybe you should
just eat BBQ, drink beer and smoke something. According to the study chemo works by creating oxidation in the body which
causes free radicals to proliferate and cancer cells to die. This is the complete opposite of taking anti-oxidants to
get rid of free radicals because they cause cell damage. Well in order to kill the bad cells - you also have to create an
oxidative state in the body. I am now totally confused but Jim is convinced by the study.
Since he quit taking even his multivitamin for
the past 3 days he says he is getting weaker and aching all over...so I said - take your regular vitamins but he is now
so paranoid about the antioxidants in them he won't even take those - I give up - I just nod my head and say "OK honey".
He will be having his 3 Year Whippleversary coming up on the 12th so I plan to take him out to Texas Roadhouse for a steak
dinner whenever he feels up to it.
We are still waiting for Miami's doctors to look at his
new CT scan. Probably won't hear from them till next week. I am also wanting to see his blood work to see what his CA-19 is.
He continues to take his baking soda and molasses w. water 2-3 times a day on an empty stomach as he believes that will
keep the cancer at bay. He says he is sleeping 14 hours a day now - I lost track...at least I have plenty of online work to do
so that is keeping me busy and my mind off things.
Miami turns Jim down for Nanoknife - Thursday 6/15/17
I sort of expected this to happen.
They said that his tumor was too large and not well defined.
They also said they agreed w. the June 1st report that back
on March 6th a different radiologist incorrectly reported the tumor
as being 1.4 when it was actually 5.6.
I am waiting for Jim to get an appointment w. his GP to look at his most recent
blood work-got the appt for Tuesday June 20th.
Also plan to ask if it is possible to get another radiologist to look at the most recent CT scan.
Jim is against calling hospice yet as he knows that once you call them you can no longer get any scans done.
I was hoping for a petscan to see if it has spread and to where but hard to get one if you can't prove you are
doing something about it.
In the meantime Miami is going to refer us to the clinical trial department
to see if there are any he may qualify for but I doubt it since he never
had regular chemo done 1st. Jim still refuses chemo and he is so weak I doubt his body can take it.
I am also following Bob on cancerforums.net, another person Jims age w. a large tumor 6 months after nanoknife
and after doing all the required chemo. He recently called in hospice because
he could not find any clinical trials in Miami where he had his nanoknife done
or at Moffit where he had his radiation done.
All they offered him was more chemo to shrink the tumor and he decided he did not want to do that again.
Raining every day, mowing - Sunday 6/18/17
It's been raining every day so grass has been growing like crazy...ended up
mowing the whole yard front and back and down by the lake - seems
like at least 2 acres - trying to keep the grass down along the lake so the water will cover
it up and not turn into a marsh. Got pretty sunburned even w. a big hat on - I
need to figure out a way to attach an umbrella to that riding mower. My Walgreens Tracker said I had done 21,000 steps - wow
must of been from the vibration of the mower.
Then it rained an hour after I got done.
Maybe I should mow a
massive Trump sign into the lawn next time and get Ron to use his drone to take pictures of it,
then post it on facebook to see if I can get a news flyover.
Need to week wack today. Oy my aching back and arms.
Going to see Jims GP on Tuesday morning to see how his bloodwork is doing
and ask why they have not sent in the request to humana to get that $5800 genetic
study paid for - we have only 3 weeks left to send in an appeal to try to
get them to pay for it. Might even ask if his GP can get a scan done so we can see if his tumor has changed much.
After we get all his stuff back from Miami will be sending it to the original nanoknife Dr in Louisville Kentucky
that teaches all the other drs to get his opinion.
Wasn't even worth doing that genetic test cause all the clinical trials in miami and tampa Jim can't get into
because they all say he has to have exhausted all other options first meaning
standard of care chemo. Not only that these trials are for a certain type of cancer
call Heptocellular Carcinoma and his is Adenocarcinoma.
All those ads they have on TV for Keytruda for cancer are only for Heptocellular.
He sleeps all morning as usual and changed from taking mollasses and baking soda to
maple syrup and baking soda cause it has less iron in it...he read that iron feeds cancer
so he is trying not to take anything w.iron in it or very little iron - even though he is
very anemic. Next will be honey and baking soda. He had just enough energy to drive to Debbies Health Food store
twice Saturday to buy stuff and put together a book shelf for his every growing collection of books
but no energy to do much else. You may catch him outside washing and waxing his cars but not doing yard work.
Oh well at least the flowers are growing and the yard looks great.
Been pulling lots of weeds. Am waiting to get motivated to get out in that hot sun and weedwack
after the grass drys up.
Carrots Anyone? - Monday 7/10/17
After buying a 25 lb bag of organic carrots last week Jim has announced that Vitamin A does not or will not
cure his cancer so he told me to go ahead and scrub, cut and freeze them - Gee thanks.
There is a whole lot more carrots this time to do that to so if anyone likes carrots - come and get em.
He is now doing 1/3 of a whole lemon mixed w. baking soda and water as his new cancer concoction. He also manages
to do a green juice once a day.
We will have no clue if any of this stuff is working until he gets his 3 month scan Sept 2nd if they will let him have one
- if he lives that long we will all be very surprised since they only gave him 3-4 months to live back in March.
They only let you have a scan every 3 months if a Dr orders it - and usually only if you are medically doing something
that a dr has ordered - like chemo for instance. In the meantime I got all his medical records and cd's from Miami
and just put them back in order by date w. reports attached and lots of other wonderful medical stuff and sent it Fedex
to the originator of the nanoknife in Louisville Kentucky...to get his opinion.
I put no hope in him 2nd guessing one of his colleagues/students in Miami...but it makes Jim feel like we are doing something.
Jim went for a walk outside today - which means nothing - just that he felt well enough to go for a walk.
My mother I just saw Saturday is now having headaches again probably from her brain tumor so she is going to a
neurologist Tuesday to see if he will give her another cortisone shot in her neck for the pain. She also has bone and muscle pain
but her bloodwork doesn't indicate anything unusual so who knows. She won't take hydrocodone cause she says it does not
work for her headaches-so she just uses ice packs, aspirin and ibuprofen. You really can't tell if someone has cancer from blood work
and she knows that being a nurse-but she probably won't get an MRI cause she knows at her age there is really nothing
they can do. She is going to be 83 August 4th so we are always surprised when she makes
it thru another B'day. So now I have 2 people in really bad shape to worry about - Thank you Zoloft.
No - my mom won't move over here - she prefers to have her own place and space and whines incredibly
when she doesn't have it. Oy - what a month I'm having.
On a brighter I had my 58th B'day June 28th and mom got me a chocolate layer cake w.chocolate icing...after leaving her
half I did manage to eat the rest myself a little each day w. coffee each morning...great w. whip cream.
Got a Trumpet Tree and Plumeria Tree for my B'day, then later a Fig tree at the local flea market - only $10 each
and they are about 4' tall - great deal.
Been so busy working online for an attorney in AL and MS haven't had time to write much - which is a good thing to stay
very busy as it keeps your mind off things.
We Liked This
Monday 7/17/17- Louisville, KT - No Nanoknife - tumor too large (over 4CM) & chemo required before & after -
At least I got all those carrots scrubbed, diced, bagged and frozen already. As for sending Jims records to Kentucky to the
originator of nanoknife (IRE) that was a complete waste of time and effort as you can't get nanoknife for a tumor over
4 cm and you are required to have had chemo (folfrinox) before and then must have (gemcetabine) after.
So today Jim is coming to the realization that unless he wants to get in line for a KRAS clinical trial in Miami - that's it.
And to do that you have to go down to Miami in person to sign up to see if you qualify, because they won't sign you up
based on all the records you send. And then you still have to get in a waiting list because KRAS is the most common
biomarker in all pancreatic adenocarcinomas. This clinical trial is a Phase 1 that has only be tested on mice so far.
I truly doubt he would even qualify because he never had standard of care chemo first.
He is going to stick w. his whole lemon pulp mixed w.baking soda regimen. Can't get another Petscan until September 2nd
that is if Humana will allow it as normally you can't get a scan unless you are doing something medical to change things.
In the meantime Jim is trying to keep his weight up by adding a 2 egg omelette w.veggies every morning,
buckwheat pancakes and 2 protein shakes a day.
Since he liked the Biocentrism Audio book shown above so much he has listend to it twice I just ordered -
Beyond Biocentrism: Rethinking Time, Space, Consciousness, and the Illusion of Death
Saturday 8/19/17- Nothing New
Jims GI dr agreed to get Jim a CT Scan so will be calling Monday to schedule it for 1st week in Sept. Humana should
approve it since it will have been 3 months on 9/2/17 since the last one 6/2/17.
Just need to see if his tumor has grown or shrunk so we know if his natural holistic regimen is working.
Next GI Dr visit 9/14/17. He takes 2 tramadol a day for pancreatic pain and is weak and sleeps all day as usual
after breakfast. His CBC blood work we are still waiting for. CA19 up to 147 from 128 but that is
still pretty low compared to other people. His CMP blood work has improved a bit. I've also been pretty busy
working online and doing yardwork so don't have as much time on my hands to do updates.
Thursday 9/7/17 - CT Scan Results Show Blob has shrunk
They did not call it a tumor on the report so I call it a blob - it is now 2X3 CM. It was 4.7 CM June 2nd - 3 months ago.
They really can't tell where his tissues begin and end so it is still not well defined.
Also on his CBC his platelets went up to 100 - so that is an improvement, still low but better than 70 which it was before.
Overall his bloodwork was slightly improved or the same.
So he will keep on eating his fish and fresh veggies soup. He is also taking a mushroom extract and still doing baking soda.
Nauseau today all day though - couldn't get him to get out and walk and get some sun which he really needs to do.
The one thing I am concerned with on the report is his portal vein is narrowing which has caused other veins in his stomach
to get larger and is also the reason for esophageal varices. This is not good as he is at risk of a vein bleeding into his
stomach or esophagus. So I get worried when he says he is nauseas. Especially w.this hurricane coming we do not need him to
have any problems right now. My mom will show up Friday to stay during the hurricane and is a retired nurse so I will
show her the report to see what she thinks. Jim just takes one day at a time - he can only think one week in advance, like
to his next Gastrenterology appointment next Thursday. I may ask the Dr if Jim can get a stent put in his portal vein
to relieve the pressure it is causing. I read that can be done but it is risky if he is prone to bleeding. From what
I've read the narrowing of the portal vein is caused by the blob invading it or wrapping around it.
Sunday 9/17/17 - GI Dr refers Jim to Vascular Surgeon
We had a good visit w.Jims gastroenterologist in Deland this past Thursday - we were lucky there was no damage
to the house from Hurricane Irma and we still had power.
The dr was impressed that Jim was doing so well and asked what he was taking. I asked Jim to write it down or email it to me
so I could post it here in detail but am still waiting for him to do that. Jims GI dr referred him to a vascular surgeon
in Orlando that may be able to put a stent in his narrowed portal vein so if that could be done it will releive the pressure
on his other veins. He said this Dr did liver transplants which was quite impressive to get a referral
to somene like that. Jim has had this narrowing of the portal vein for over a year so it is about time
that something was done about it or at least have it looked into. The dr explained that it causes blood to back up into veins in the stomach and esophagus,
the ones in the esophagus are called esophageal varices.
Jim actually was outside banging nails and screwing boards to get
these big wood fence panels ready to put over the sliding glass doors before the hurricane. So if he was able to do that
and not pop a blood vessel - that is pretty amazing. He did sleep for 2 days solid after doing all that work as it really
took a toll on him even though he did have various people come to help him. I would like to thank our neighbors Ron and Don
for helping out so much during this time. We kept the panels up for about a week and it kept his bedroom nice and dark
so made it easier for him to sleep. We just took the panels down yesterday while Ed was here to help and then found out
another Hurricane Maria was coming. I like finally being able to see outside and get some light in the house but am
not looking forward to having to put the panels up again in a week. We've decided to store them on the patio until the end
of hurricane season.
Tuesday 9/19/17 - Jims Present Regimen
Recently Jim was asked what his current cancer preventive regimen is and this is what he wrote:
Here are the things I do. No sugar (feeds cancer), no coffee (too acidic),
For late lunch early dinner
I eat Atlantic fish and a soup made of plenty of fresh vegetables such as zuchini, yellow squash, eggplant, celery,
rutabega, bell peppers, red onions, tomato and carrots in filtered water with very little seasoning or salt.
Ann makes a big pot of this and refrigerates it t be reheated a few days during the week.
For breakfast I eat steel cut oats that are low on
the glycemic index, soak the oats in high ph distilled water
overnight then cook at a lower heat for 15 minutes in the morning. I drink
plenty of distilled water to reduce biofilm in my body.
I mix a heaping 1 teaspoon of organic baking soda per gallon of
distilled water to raise the ph of the water to around 9. Add 10
drops of Cell Power to each large glass of water (this adds
oxygen to the water). Will add 1 Tablespoon of liquid chorophyll to one
of those glasses per day, along with the baking soda and cell
power. Drink plenty of high ph water during the day.
In the evenings will do an organic coffee enema, clear myself first with a
warm clear purified water emema. The emema is extremtely
important for me. The coffee enema is introduced warm and
flushes the liver. I believe it is the main reason why my
cancer has not metastasized. During the enema period of 10
minutes warm clear water and 15 minutes warm coffee enema I rest on
a mat in the shower then evacuate on the toilet. During
this period to pass the time and get the process done I
read. Get my mind off the stress of dealing with the
disease and dealing with the process.
At bedtime I take a cup of distilled water add 1 heaping teaspoon of baking soda in a pan of water, add
1 1/2 Tablespoons of potassium compound salts stir into water and warm, add 5
cell power drops and drink.
I thought I was a goner 3 months ago after taking oncologist's infusions of iron and
sucrose, fed the tumor, 4.7 cm x 2cm. With this regimen since then
over 3 months I have reduced the tumor mass by 1/3 to 3 cm x 2 cm.
I no longer see that oncologist and refused any further iron/sucrose
infusions. This regimen has worked for me with changes
Vitamins I take: organic multivitamin, C 1000 mg., D3 2000 IU, B12, B17, AHCC,
proteolytic enzymes, creon for digestion
Exercise: walk, stationary bicycle,
lift light weights and bounce on small trampoline, breathing
exercises, get plenty of sleep - I sleep alot as I am weak and tired during the day
Please refer to the book about the Gerson therapy and read thru the many
things I have done previously. The key for me is the liver cleanse and keeping my body alkaline.
I believe and many other people do too that Cancer can not live in an
alkaline and well oxygenated environment."
Tuesday 9/26/17 - Orlando Vascular Surgeon - No call
The nurse did not call today to say if Jim could get a stent
put in his portal vein so we waited till after 3:30 and called
and she said the dr made no determination.
She also mentioned that they don't normally do that type of procedure.
She told me to send his disk of his ct scan and they would look at it next thursday...
in other words - even though I told her I could send it last week - she said not to
so that wasted another week of waiting.
She said it will go before a board of drs who will tell Jim what they will do.
This is the same Orlando hospital that told Jim in 2016 he had to do chemo and since he refused
they had nothing to do with him after that.
So we will send the disk and wait till Thursday October 5th for them to look at it
and in the meantime I left a message for his GI dr
to see if we could get a different referral to another vascular surgeon elsewhere.
I already know that Orlando is going to suggest he get chemo so I want to have
another dr lined up somewhere else. He has to be referred by a specialist - his GI dr
or they will not pay any attention to it...I can't just look one up in the humana book.
We have learned that you have to get a referral from your own specialist or they will
just blow you off. And even then they will still blow you off.
That Orlando hospital never returned our calls after we left in 2016 and they screwed up on Jims ascites test back then
a year ago...they gave him a very pretty room with a view and did manage to find where he was bleeding in his stomach and
cauterize it but after he said "no chemo" they wanted nothing to do with him.
So I have a feeling they will say no to any surgery.
We shall see. More waiting for nothing to happen. In the meantime Jim is down to 125 lbs even though he has a good
appetite and tries to eat as much as possible, says he feels like he is dying. If I ate as much as he does I'd be a blimp.
He has the same pain every evening and is just generally feeling awful and sleeping all day.
Wednesday 9/27/17 - Getting a referral to a different vascular surgeon in Daytona
I decided to research the humana book and online and found 3 vascular surgeons in Ormond and Daytona
associated with 3 different facilities.
I picked the one I felt was best and that had listed on the website experience with mesenteric vein surguries
and called them today to ask for an appt and got one setup for Friday October 6th.
I am going to be mailing his CD's w. Petscans and printed reports
and bloodwork to them today. The nurse said they could have him admitted for surgery at Halifax within a week after that.
So that is much quicker than going thru the Orlando surgeons we were referred to which is booked until January.
We can't wait for Orlando as Jim today had to take a hydrocodone this morning for the pain - it is getting
that bad. He had to take 2 tramadol yesterday. He says he even feels the pain with the hydrodocone.
It take a lot of pain to get him to take a hydrocodone.
This constricted portal vein I am sure is what is causing this - it leads to lack of blood flow to
the intestines next if not treated and then mesenteric infarction (lower intestine and bowel collapse from lack of blood getting to ti)
it is an emergency situation but from what I've read it is hard to deal with. I did a lot of research
on it last night and they need to releive the pressure on his portal vein before he has a vein start leaking or even worse
an ischemic infarction of his bowels (dead bowel) which causes leaking of bowel into bloodstream and inner body cavity
and toxic shock, coma or death. His GI dr never mentioned this but knows about this portal vein being constricted
and how the back up of blood to find other pathways causes all kinda of problems-such as the esophageal varices he has
had since December 2016. I told Jim - do not panic if you spit up blood because it means the varices are leaking.
Just sit up and try not to panic-if you panic - you can inhale your own blood. I will then put a cold ice pack on his stomach
to help with clotting and call for an ambulance. Maybe give him a cup of ice cubes as coldness helps with
blood clotting. I have thought of all the scenarios ahead of time and what to expect.
He also feels nauseas so that is another sign of problems he did not have before. We both agreed going to the ER is useless
because most likely they would intubate him which could cause internal bleeding in his esophagus caused by the esophageal varicies
and possibly choking on his own blood.
I want to avoid this scenario and keep him quiet in bed and pain free until we can get him to a vascular surgeon
that is well informed about his condition. If you see an ambulance show up this week it is because he could not wait
for that appointment.
The thing that bothers me the most is that I know his family does not read this and I explained to him that his neighbors
actually pay more attention to what is going on with him than his own family. His family it seems just can't be bothered
to do all that reading - since I am such a long winded writer - Hats off to Greg - LOL
Wednesday 9/27/17 - About my Mom
Last Saturday while I was over to my moms helping my brother put a new floor and tile down in her bathroom
she decided to show me her bloodwork she had gotten earlier that week. It showed her hemoglobin, hematocrit and rbc
(red blood cell count) had dropped below range. I asked to look at her previous test but she didn't have it so I told her
to get it when she had time.
She is weak and tired so we know it is anemia which she explained also meant her 1 kidney was losing it's function and that
she would probably not last more than a year. She is 83 now and can hardly walk because of her screwed up knee surgery
so I know what I am up against in the near future. Struggling between taking care of mom and taking care of Jim.
I have been looking at Jims bloodwork for years so
to me hers didn't look so bad compared to his. Mom said she now feels tired all the time and sleeps more
- I said - it is ok to sleep more now - you are older and you don't sleep nearly as much as Jim.
But my youngest sister feels she should exercise more and so she asked me
tell Joanne to lay off on that idea. I feel bad enough when my mom feels like she has to cook us something when we come
to visit. She cooked ham, potato and veggies while my brother and I put in her new bathroom tiles.
Just walkin around the kitchen is tough for her so I hate to see her struggling to do that but getting her to move
here w. me and Jim is impossible because of their personal political affiliations they just do not get along.
Jim enjoys picking on my mom about various political topics which aggravate her to no end.
Plus she likes having her own place - I just don't know how long she will be able to take care of herself.
She isn't has helpless as Jim yet thankfully. Does her own grocery shopping and laundry still.
Thursday 9/28/17 - Had to take Jim to Florida Hospital early this morning
Just got back from hospital about 4 pm.
Jim was in so much pain Wednesday that after taking 2 tramadol over about 16 hours the pain was still there so
then he took a hydrocodone - he was already nauseus before that so then he started throwing up.
Around midnight he starts saying he wants to go to the hospital, knowing I can't drive at night
and I said - I have got to get some sleep - so after I wake up I will take you
or you can take an ambulance. He's too tight to pay for an ambulance so he took a lorazepam at 2am
and managed to sleep for 3 hours.
So he let me sleep from 2 am to 5 am.
At 5am I guzzled my coffee and took him to the hospital
as he said he was still in pain - I was hoping after he slept awhile the pain would of gone away...
They gave him a tramadol around 7 am and within a few hours the pain went away.
His blood pressure and temp was fine. They didn't even give him saline.
They took his blood and it is about the same as his last bloodwork on 8/10/16
except his platelets went from 100 down to 67.
Dr said he didn't need a transfusion unless it got down to 20.
They did a CT scan because we were concerned his constricted portal vein was going to cause him
to have mesenteric ischemia (not enough blood going to the small bowels because of portal vein obstruction)
This could cause what is called mesenteric infarction or also known as bowel death or a tear in his intestine
or bowel that could leak into his body and cause toxic shock.
They did say he had a blockage in his portal vein - not just a stricture as it said on his last CT scan
9/5/17 but that his other vessels in his stomach were taking up the slack - I already knew that from his previous CT
9/5/17 as his veins in his stomach and esophagus are swollen. The ones in his stomach have been swollen since
6/2016 and he has had esophagul varices since 12/2016.
He has an appointment to see a Vascular surgeon next week on Friday the 6th
(I tried to get an earlier appt but could not get one as this surgeon does surgeries all week
long at Halifax hospital in Daytona)
and I hope he will be able to do something about this blockage.
My mom said the blockage is causing the muscles to spasm from lack of blood and that is what is causing him more pain.
They never said anything like that at the hospital. They did say his tumor had gotten a bit bigger since his CT scan on 9/5/17 which was just 20 days ago but when I read the report
- it says nothing about size.
We ate at Denneys after he got out of the hospital and now he is sleeping.
The dr at the hospital gave me a prescription for percocet which is milder and can be taken 5 hours after the
tramadol with food. She told me to give him that instead of hydrocodone.
I am keeping track of when he takes his painkillers so they are taken on time.
He was in so much pain yesterday he said he felt like he was dying-that is the only reason he took that hydrocodone
but it had never made him throw up before.
Long day - and have to go pickup his prescription. Will see how he feels when he wakes up.
Well Jim wakes up around 8 pm and feeds the cats then heats up his coffee as usual...I ask how is your pain and he says he still
feels a little pain...so I tell him he has to take a percocet because soon it will be 5 hours and that tramadol is gonna wear off.
You can take 1 every 3 hours so after much bickering he finally agreed to take it. I said "do you realize that
ER did absolutely nothing for you except give you a tramadol - you just have to take your pain meds on time
and quit chasing the pain". This percocet will tide him over until
he can take another tramadol at midnight. The hospital said he could overlap the two. I told him about the painful
spasms being caused by the occluded portal vein and that this problem was not going to go away until it was fixed.
Such a fight trying to get him to take his pain medication before the pain gets worse. I just wanna get some sleep.
Friday 9/29/17 - Waking up with pain
I think Jim finally gets it - he took a Tramadol this morning right after his oatmeal and then
Percoset at 12:30 w.a protein shake. I gave him a choice of chicken and his veggie soup or his favorite
pizza and of course he prefers the pizza first - DiGiorno mushroom and garlic w.bell peppers. We won't tell
anyone it's not organic.
Next Tramadol at 3:30. He was in pain at 12:30 when I came back in the house
after 2 hours of cleaning the boat.
Have people coming to look at it Sunday afternoon so 1st time cleaning the barge all
by myself...but actually I am more methodical at it. Cleaning it w.Jim made me want to scream - LOL.
He is trying to get $17K for it but I think he may go lower cause the steering wheel needs to be replaced
and tires probably. At least that is what I have noticed so far - haven't gotten to the inside yet. Have it on craigslist
in case you know anyone interested.
I talked him into selling or trading it for something like a 35' Class A Motorhome - in the hopes he will feel well enough someday to
actually go somewhere and as a backup plan for my mom in case she gets worse. I can't get her to move into the house
but maybe she will go for having her own space temporarily until I can get her into the house. Will be good in case
we or my relatives lose power during hurricane season too. He dreams of me driving while him and his cats get to
lounge around in the back on the way to vegas. I will be happy if we make it to the casinos in Biloxi.
Saturday 9/30/17 - Sister coming to visit
Jims sister is bringing over a Sheperds pie as he used to love eating that so we shall see if he still does.
Yup he ate about half of it and Kevin and I had the rest during the week. I'm going to have to
leern how to make it as it has lots of calories which Jim needs.
I wasn't able to get the cabin door open on the boat so had to cancel on showing it sunday.
It had lots of tarp dandruff so threw those out and bought new ones and new rope, he helped me
cover it back up. At least it got him out of bed trying to open it...he wouldn't let me hire a locksmith...
so the idea of selling or trading it was postponed.
I spent the rest of the week cleaning it and boy am I glad I did - I didn't realize how much junk he had in there.
It looks so much better now -glad I didn't show it last Sunday.
Friday 10/06/17 - Pain is now manageable
Early this morning we went to see Jims Vascular surgeon in Daytona.
Jims dr said there is nothing he can do because to go into the portal vein would mean
going thru the liver to get to it and that would not be a good thing.
He said Jims body is creating new vessels to grow around the clot called collateral vessels so that is a good thing.
He said anticoagulant would not unclog him
because it is probably either scar tissue or the cancer wrapped around his vein squeezing it and not a clot
inside it. He is going to talk to Jims original surgeon in Gainesville about his opinion
and let Jim know what that surgeon said. He congratulated Jim on living so long and said for him to keep on
doing what he is doing.
That as long as he takes his pain medication on time he will have no pain.
So that is all he can do now is take pain meds. He also doesn't have to wait 8 hours to take a tramadol
he can take it every 6 hours if he wants to which is good news as the other meds make him nauseus.
So that's is it - no more doctors to see.
So after that we went to Ihop and he had 2 bacon, 4 sausage, 2 eggs, hashbrowns and 4 pancakes.
In other words after he finished his breakfast he had the rest of mine.
So he still has a good appetite, even had a sandwich at moms after his nap and pizza, bread and cheese when he got home.
Then went to sleep.
After the Drs appt we drove down to a place south of my moms and looked at a 1997 Bounder RV with only 21K miles on it
at a used car place. All the dash, front and back AC worked and they had redone the roof and put in new carpet.
I even climbed up on the roof to check it. Awnings are ok. They had dropped the price 16K to 12K.
They couldn't tell me how many hours the generator had on it though.
Outside needs new paint-I would still need to test the frig and stove and ask them to run the generator. Jim was tired
so he sat inside while I looked underneath for any water damage. Floors looked ok from underneath.
Maybe tomorrow if he feels up to it we will go look at a couple over in Orange city. I am trying to get him
motivated to sell the boat on Sunday as we have 2 people coming to look at it.
Then we can buy an RV and maybe go somewhere.
Thursday 10/12/17 - Not going anywhere
Jim is taking his pain med tramadol every 7 hours now finally because 8 hours is just too long. He gets very irritable
when the pain comes back. I'm going to call his GP to see if he can take it every 6 hours as his vascular drs
nurse said he could. He sleeps most of the day but is still able to feed his cats and birds and drive to Publix to buy catfood
but that is about it. Rarely goes outside. Although when he is outside he seems to get enough energy to polish whatever
car he plans on driving. Kevin caught a big snook so the freezer is full of fish for Jim.
Plenty of people calling to see the boat but Jim just doesn't want to show it so that idea has past.
Now that the lake has come up and formed a shallow pond out back we have a family of ducks hanging out there and the cranes
are finally willing to share their space without chasing them off. Went to visit my mom today and did my usual housekeeping,
planted some flowers for her and did a little grocery shopping. Even though I had left
a pot of soup for Jim to put on the stove along w.fish to heat up - he decided that making his favorite frozen pizza was easier.
Oh well at least I got him to eat the soup and fish after I got home to cook it.
Monday 10/16/17 - Chills, Fever and Pain
Well this is the first time Jim has ever had a fever that I can recall. It is common with advanced pancreatic cancer, usually a sign of infection
caused by a blockage either in the bile duct or liver. Since he isn't yellow yet I am guessing it's the
portal vein blockage affecting his liver. All they can do is give him antibiotics for infection. He is drinking lots of water now
because he didn't really drink enough water today since he was sleeping all day. Hopefully the hydrocodone/acetaminophen
will help lower the fever. He refuses to take antibiotics so says he won't be going to the hospital.
At least he is willing to eat green apple organic apple sauce-his new favorite. Well good news is his temp is back to
normal - could be dehydration or the acetaminophen lowered it. Will be checking again later tonight and in the morning.
Boy that was a scare.
Tuesday 10/17/17 - No Fever
The fever didn't come back so that's a good thing. Jim actually felt well enough to drive to
Debbies Health food store to get more organic coffee. I've been too busy working online to go anywhere today.
Friday 10/20/17 - Tramadol every 6 hours
Jims was complaining last night that we needed to call Humana because the painkillers weren't working.
I said that is because you are not taking them enough. The nurse at his GP said he could take tramadol every 6 hours.
So this morning he decided to do that after eating breakfast and now he's sleeping as usual.
Last night he said he didn't even want his sister to visit for his birthday on Saturday the 21st.
He just wants to be left alone because any change stresses him out and causes him pain.
So the house has to be kept quiet. He doesn't like any noise except the sound of Fox news on TV 24/7. I also have to talk
in a low voice because he says my voice is too loud - Judge Judy is much louder. Ed was visiting last Saturday and
his little pomeranian Layla was barking too much so that was too much noise -
even though Ed is well intentioned his voice is just too loud cause he's kinda going deaf.
He goes out of his way buying groceries at Publix, all organic stuff he thinks Jim will eat - and Jim did end up liking the
green applesauce and blue chips and his favorite type of pizza.
We got Jim a hamburger at Beefs and onion rings which he loves but they caused him so much agony
- he will never eat them again. Even the homemade soup and fish causes him pain afterwards.
He is down to 121 lbs because everything just goes right thru him. A month ago he didn't think he would make it to his
69th Birthday but here he is - still alive and grouchy as ever.
So drink a toast to him cause he doesn't want to see anyone...but I am pretty sure he will make it to his free
Denneys breakfast tomorrow.
Thursday 11/2/17 - Vaseline fixes everything
If you can find where he put the jar. We use vaseline on the pool filter rings to keep them
from leaking air into the filter, so I am looking all over the house trying to
find it. Jim uses it on the rubber around his convertible top car windows cause they dry out and leak.
Works good on refrigerator seals too...but of course when you are looking for it you can't find it.
So I had to help myself to Kevins jar, I wonder if he'll notice - LOL. So I am tellin' Jim
he is gonna have to buy a new jar at dollar tree - and the thought of spending a buck gets him up
outta bed to look around. He tends to pick things up and lay them down wherever,
so I am constantly looking for things.
He is about the same as always, staying awake till 3 am and sleeping until 4 pm...which is fine by me cause I get
a whole lot of work done while he's sleeping.
After he is up and around about 6 pm he tends to start telling me to do things-at which time I am tired from
doing things all day long and just wanna sit down and relax. His clock is off and he's in a whole nuther world.
After he eats and takes his tramadol he tends to settle back down again.
I did send his last CT scan CD to a liver dr in Orlando about a week ago but haven't heard back yet - it's for
the same thing as we went to the vascular surgeon for - to see if they could do anything about his constricted portal vein.
I will give them a week and call again
My mother and 3 sisters emailing back and forth is enough
to fill a thrilling novel lately. Thanksgiving at my mothers is gonna be real fun and not in a good way.
All my sisters will be there because we have to figure out what to do about mom. I am trying to get them to figure it out
way before they get here otherwise it will be a screamin match. I am trying to get them to realize that
one of us that is the most available is going to have to see an elder care attorney here in FL and get a POA.
For some reason my sister in Texas thinks she is going to do this - kinda hard to manage things when your that far away.
She has never cleaned moms house, taken her grocery shopping, done her laundry or fixed things
but thinks she is gonna take over. I think her mouth is writin' checks her ass can't cash.
In the meantime I am filling out all the online forms trying to get her extra pension benefits from the VA
for when she becomes housebound. Mentioning the word ALF to my sisters is like condemning her to the pit of hell
so "housebound" care is all they will agree to. It takes about a year from the time you apply to get anything and I plan on having
these all filled out to show to my sisters when they get here. Baffling them with lots of paperwork might
get them to be more reasonable. I just love reading the stories on
AgingCare.com - it makes me feel better knowing
that others have much worse situations to deal with.
Monday 11/13/17 - Low grade fevers
Jims been having fevers about 100 some evenings but I get him to drink icewater and the fever goes away- probably
he's not drinking enough water. He is back up to 126 lbs. Got him to eat Marie Callendar pot pies
which have lots of calories. He still sleeps all day and takes his pain pills and stays up all night reading.
Liver Dr from Orlando still no calls back but they did send the CT scan cd back. I have left messages but
they never call back.
Visited my mom Friday the 10th to do my usual house cleaning. Got there really early and she seemed kind of out of it,
looked like she hadn't cooked much cause the top of the stove was too clean but she had enough groceries.
Was out in the driveway and the lady in the trailer across from her came up and asked how my mom was after she fell.
I assumed she was talking about this past summer when her daughter had to help me pick mom up.
Nope - turns out mom didn't tell me
she had fallen in her kitchen a few days ago and Carol had to get the neighbors next door
to lift her to put her back in her lazyboy as she could not lift herself up into it. My mom is overweight and has no
upper body strength. So she hid the fall from me. So I told my sisters when I got home via email. They are coming
for Thanksgiving to try to convince mom to come live w. me. Unfortunately Jim does not want my mom living in the house.
She doesn't like sharing the bathroom w.strangers and Jim refuses to ask Kevin to leave even though I promised she
would pay the same rent. He said she could stay in an RV next to the house until after he dies. So nice of him.
I doubt my mother would even move over here anyways in either case but I need to be prepared in case she has a bad fall.
Her insurance covers at home nursing care but not 24/7. She's not homebound yet so until she is willing to give up her
car and driving she can't get homebound care.
I guess I am going to have to see if my siblings will pitch in for wifi and a nanny cam for now. Big sigh.
Friday 11/17/17 - Orlando surgeon finally calls back (liver dr)
Actually it was his nurse that finally returned my many calls because they had setup an appointment with only
2 days advance notice for us without calling first. So after calling to say we were not going to come she finally
called back and said she had been on vacation. Luckily we didn't have to drive all the way to Orlando again
only to hear the same old news - can't do anything. This particular Dr after seeing Jims CT scan from 9/5/17
says it looks like the tumor has invaded the portal vein - his opinion is it is not a clot or embolism.
So glad we did not drive all the way to Orlando to hear that 1 minute opinion. I didn't really expect them
to be able to do anything anyways but it made Jim a little more bummed out that day. Takes a while for new opinions
to sink in. Every doctor and radiologist has an opinion and you know the old saying. In other words nothing has changed
just another opinion. Sort of like different people looking at the same painting. Jim says he feels weaker and his arms
are aching a little - I think it is the cold weather. He doesn't get out of bed much or even go outside his own house.
It takes alot to get him out of bed to drive anywhere - he says he has no desire to even drive his cars anymore.
His weight is abut 126 lbs. I was trying to figure out how much I had driven the Durango cause he said it needed
an oil change.
Well I had only driven it 2092 miles in 9 months so it definitely didn't need an oil change...at least it gets driven.
Is going to be tough to get motivated for the holidays - I really don't feel like decorating at all - I have even less
motivation than last year. My sister in SC canceled visiting because she doesn't like the other sister from TX
- I told her save up for when I really need your help with mom cause that day is bound to come.
Wednesday 11/29/17 - Jim started on Zoloft
I was researching Pancreatic Cancer and ran across an article where they were testing schizophrenia drugs on mice.
It turns out that by regulating the DRD2 (dopamine) receptor it slows tumor growth. This made sense to me so I
researched antipsychotic drugs such as Abilify...but that is for bipolar disorders...so I researched Sertraline
and found it also regulates dopamine. Jims GP had already suggested it for him but he turned it down.
I showed Jim these articles about the many studies they have done and he was finally convinced it could help him.
So I called the Dr and he called a prescription in for him and he started on it Tuesday. To me it makes sense
that relieving stress and anxiety reduces inflammation so it certainly can't hurt. Jim has always been high strung and full of
anxiety so I was so happy that he finally decided to take it. Maybe it will also make him less irritable too - we shall see.
Thanksgiving at my moms was for me a whole lotta work-so glad that is over. Sister from Fernandina Beach got stuck in
traffic on I95 so was only there a few hours. My sister from TX did not back me up
on trying to get mom over here - she still wants her to move to TX and totally ignored all the repairs
I pointed out that need to be done. Mom hates Texas and will never move there.
Mom did manage to fall again in front of everyone
so I was glad my sister got to see that. I did learn from one of the neighbors a way for her to lift herself back up using
the stairs and railing-will test that out next time I visit. It is hard to get her to try new things but at least it gave her
the idea in case she falls again. I gave her neighbors my number and told them to call if she does it again cause
she does not tell me. When I got home I hit the Black Friday specials online and ordered her a new window ac and stove
- as I found out her oven wasn't working right when I was just trying to heat up a precooked turkey.
Also found out her porch roof was leaking cause it poured rain all day. Always somethin - mom keeps saying she
wants to be independent but she can't keep up with fixing things. I filled out the forms for FEMA help to fix her roof
which if I had known was leaking I would of done sooner.
Thursday 12/01/17 - 2 Sad News
Jim just got his bloodwork results and the CA-19 (cancer marker) is elevated to 268 up from 143 in August.
He is researching Limonene (a citrus turpene supplement made from the skins of lemon and orange) to add to his regimen.
Jims sister just found out she has a 1.5 mm breast cancer in 1 breast, so Jim gave her his Foundation One genetic test
that will be shown at the tumor board next Thursday. I pushed her to get them to do further genetic testing on her biopsy
than the standard breast cancer genetic test as Jim did not have any breat cancer genes. He has an ATM gene which they
are just now discovering is associated with breast cancer as well as many other types of cancers.
ATM Gene Mutations and Increased breast cancer risk
You can also read at that link many articles about how radiation actually increases the spread of cancer if you have the ATM gene.
Jim also has a P53 and KRAS which she should be tested for as well. Their mom died from breast cancer at 53 so
she wants to get it taken care of right away. I am waiting to see her bloodwork because if there are any signs in it then
that is not good. Jim had no sign at all in his blood work that showed he had cancer but he does now.
They could only see it by doing a Cat Scan. I am trying to get his sister to push for a full body scan to see if
there is anything anywhere else first.
They are already recommending a lumpectomy but I feel she should have genetic testing done first and full body scan before
doing anything. Unfortunately getting the doctors to say it is medically neccessary so insurance will pay for it is difficult.
They have certain standard of care steps they go thru for everything. Big Sigh. Of course the tissue they remove will be tested
but they will not do the expensive genetic testing that covers the genes he was tested for as that costs $5800
and you have to fight with your insurance company do get them to pay for it. I told Jim - well your going to give your boat
to your sister anyways - sell it and pay for her to get the genetic testing. He balked at that. So funny - first she told him
to pay the $5800 himself instead of waiting for insurance to pay it
and now that she is faced with the same situation - I know she won't pay either.
Shoes on the other foot now. It is easy to tell other people to pay for things but when we are faced with it my how the tables
do turn. And what is even more amazing is that this cancer is appearing in her at the exact same age that Jim found out he had cancer.
This to me looks like a genetic time clock that has just gone off. Reminds me of the nursery rhyme - "The clock
struck 1 and down they come - hickory, dickory dock."
Sunday 12/10/17 - Petscan Results
The Petscan shows that there are now 2 tumors next to each other at the site of the surgical clip
and the SUV uptake of one is 10 and the other 19 - that is the highest uptake reading I have ever seen in his Petscans.
As for the size of the tumor that is based on the radiologists observations-and each one reads it differently so I no
longer rely on their opinion. According to this report the tumor is smaller than the last Petscan at approx.
2 cm but they truly cannot tell his tissue from the tumor as it is so intertwined-so they are just guessing.
We'll be going to see his GI dr on Tuesday but he just goes by the report - doesn't look at the scans. I may send
the CD to that liver dr in Orlando to see if he will look at it- he actually looks at the scans and then I can get
his nurse to tell me his opinion-without having to drive all the way over there. He already said he can't do anything
but was nice he actually looked at the scans and had an opinion that I was able to coax out of his nurse.
Jim is also in more pain than
ever before and gets nauseas which he had not felt before. He threw up after eating a few days ago and last night
was sipping his protein shake hoping he didn't throw up. Luckily he hasn't and has been able to keep food down.
The Tramadol that is supposed to kill pain for 6 to 8 hours works for about 3 hours and then the pain returns.
Instead of taking a hydrocodone
as an overlapping drug Jim prefers to wait till he can take another Tramadol because he is afraid of the hydrocodone making
him nauseus. He had to force himself to eat his soup with fish today...maybe later he may have a pot pie. He is very weak and shakey when he is awake and today he looks
very sick - paler with purplish eyelids. He fell back to sleep after his bowl of soup.
Jims sister is waiting for the genetic test results on her DNA and biopsy to see if she has any of the same cancer genes as Jim.
She said the tumor board at FL Hosp Deland was quite interested in Jims genetic reports as they don't see things like that
much - but are starting to realize that it does affect their surgery and treatment decisions. The age of genetic testing
is slowly creeping up on them.
The oncologist discussed with her the possibility of a full mastectomy if she does have the ATM gene. So mentally she is
preparing for that possibility. In any case she will be getting chemo. I gave her a magazine with stories
written by survivors of their experiences and a forum link. Her blood pressure has been up since she has been going thru this waiting game
and I suggested she ask her dr about taking Zoloft for the anxiety. It has really helped Jim with his anxiety and irritability
but I still have to tell people when visiting to speak quietly as loud voices and some noises still bother him.
Thursday we see his GP dr so he can get his prescriptions refilled.
Thursday 12/14/17 - Saw 2 drs this week.
Not much new to say- Jim has 2 tumors where there was only 1 before. No metastasis. No ascites.
The SUV uptake (the glowing area where cancer sucks in the fluoro-D-glucose (FDG)) is:
10 cm=4 inches (size of a donut)
19 cm=7.5 inches (length of a pen)
- they can't see the actual defined edges of a tumor - just the glowing tissue
as it is intertwined around his portal vein. The best they can do is measure the most glowing part
and call it a tumor measurement which makes no sense at all to me so I'm not going to even mention it.
Every doctor and radiologist has a different opinion so that really makes it meaningless. To me it is
ridiculous to keep on paying a $200 Copay to have an unclear report about something that is only growing bigger.
At some point Jim will get tired of paying for meaningless blather. I am beginning to understand why the insurance
companies don't want to pay $3500 for a petscan unless you are actually doing something to change the results.
Nonetheless - as long as his Gastroenterologist can keep on ordering Scans - he will keep on getting them - as long
as the insurance company will keep on paying for them. I almost want to kick his GI dr in the teeth for
ordering them and not saying - hey we can't get you any more scans since we are not actually doing anything
medically to change the outcome. Why not own up to it doc and tell him they are a waste of time and money and
do not make him feel any better. Oh yeah - I forgot - every time he makes an office visit to a specialist that's at least another
$200 in your pocket. You would not believe the Orlando specialists that want to see Jim just so they can tell him
there is nothing they can do for him - they only do that to make $800-$1000 for the office visit.
It took us awhile to catch onto that BS.
He is on 3-4 tramadol a day now and gets nausea every night
so takes compazine for that. Finally got the generic equivalent of Zofran today to try for his nausea
as I was told that is better.
Asked GP about the Fentanyl patch but was told he has to see an oncologist to get that.
Since Jim doesn't do chemo he quit seeing his Oncologist but now he needs one so he can
get the stronger painkillers so am trying to setup an appt for a new one.
He is prejudice towards all his old Oncologists because they told him to do chemo
which is sort of silly because that is all they can do for him.
So will continue seeing drs so he can get painkillers as he still refuses to call hospice because
he can now get another CT scan in March.
Can't get any more scans once he's on hospice although he would get
a nurse visiting weekly and morphine if he needed it.
He doesn't qualify for home bound care yet so I can't get any extra help at all
but the neighbors have offered to help if I need a break. Thank you neighbors.
He says as long as he can get out of bed and walk around he is not getting on hospice.
I have read good things about hospice - you get as many nurse visits per week as needed
and painkillers without having to beg for them.
I have even read about people that lasted over the 6 months of hospice care and they just start over again.
Jim thinks he is miraculously going to get well from all the natural supplements he is taking
so wants to track the size of his tumor thru petscans. He says that so far it seems like nothing he is taking is working
but he ordered some more different supplements so will keep you posted on what those are and how they work out.
Still waiting for his sisters genetic test results.
Had to really push myself to decorate for the holidays as I am
definitely not in a festive mood.
Tuesday 12/19/17 - Good News for Jims Sister
Her breast cancer genetic test results came back negative and she does not have the ATM gene-so this means
she will just be getting a lumpectomy-an outpatient procedure on the 29th possibly. So that is great news.
They only tested for 27 genes related to breast cancer but the ATM gene is the one we suspected
she would have in common with Jim. So glad they tested for that one and she did not have it-as that
came up in Jims 2014 genetic test at Shands in Gainesville. Jim does have other cancer related gene mutations
that those would have to be tested for on her tissue in a more comprehensive test later on if needed.
It will be a long time down the road before her doctors would be able to get the insurance company
to pay for that type of testing. It has to be considered medically neccessary for the insurance company to pay for it.
Before that happens she would have to undergo standard of care chemo first which we don't know at this point if
they are going to do that. Her tissue will be tested the same as his was in 2014 to see if there are any
cancer cells within the margins.
I was concerned that her DNA mouth swab test versus his blood test for DNA to create the genetic test was as accurate and
read that both types of tests give the same results. Now to find out if tissue samples that are tested
are as accurate or more accurate for genetic test results. That remains to be seen.
It has truly been a learning experience for me understanding the different types of things that they can do
any DNA and genetic testing on - sort of something like out of CSI. Typically genetic testing is done on mouth swabs and
blood and then later on after surgery it is done on tissue. After surgery you have to jump thru some hoops
to get the insurance company to pay for genetic testing on tissue removed during surgery. Most
require large copays or for you to pay for the whole thing and can range in retail price from $1500 to $6000
depending on how many genes are tested for. Being tested for individual genes runs about $250 per gene.
Insurance companies negotiate better rates for multiple tests and are in a better position to get
cheaper rates than an individual can get. I explained this to Jim when he was saying all his relatives should
get tested. No one wants to shell out thousands of dollars for genetic testing if they can get their insurance
to pay for it someday down the road. Genetic testing is very expensive sort of like computers were back in the 80's...
I predict in 10 years - they will be selling genetic testing at walmart along with self driving robotic lawnmowers and cars.
On another note Jim has within the last 2 days given up on his idea of a Ketogenic diet to kill cancer.
After I went out and bought Kale and Chard to add to all the other veggies I normally buy - he got down to 119 lbs
this afternoon so decided that cutting out the carbs (cause they turn into glucose) was not going to work. He was determined to cut back on carbs
so quit his oatmeal for 2 days and instead I made him a 3 egg omelette with cheese and a protein shake w.flax seed oil
and black seed oil and organic peanut butter, he made me leave out the berries and green apple that I usually put in it.
The Ketogenic diet does not allow sugars of any kind - not even fruit sugars.
So after only 2 days of trying this new diet, No Ezekial bread, no applesauce and No Oatmeal he got down to 119 lbs.
So this afternoon I made him his usual pot pie - as he has come to the conclusion
that (as I had told him would happen) he would lose too much weight trying to go ketogenic. I had told him before - if he gets
down to 118 - that is the point of no return, as it is one third of his original weight before he had surgery back in 2014.
I have had that number of 118 lbs in my mind for a long time and have reminded him of it constantly that we have to keep
his weight up.
The surgeon that did his Whipple surgery years ago told him it would not be the cancer that killed him but the loss of weight.
You see Cancer causes your bodies metabolism to speed up and eat up fat and muscle mass as it tends to burn things up faster
than you can eat to overcome it...this is called Cachexia. His GP last week told him he had to eat 3000 calories a day to
keep from losing weight...don't we all wish we could eat like that. If I ate that many calories a day and layed in bed all
day like Jim does I would blow up like a blimp...but the cancer is hypermetabolic and burns up calories and when you don't
get enough calories it then burns up your own fat and muscle tissue so you slowly waste away. Jim says he has no appetite
and is only eating to stay alive. It reminds me of that science fiction episode on the 4400 on Netflix where those people ate
as much as they wanted but died of starvation. Yesterday his sister asked if he wanted to go out to get a steak dinner
at Roadhouse and he was determined not to eat steak because he thinks it feeds cancer. I will ask him again when he wakes up
if he has reconsidered that idea. She was here yesterday and had to listen to him going on and on about how glucose
feeds cancer and he was talking all about this ketogenic diet. I told her it would not last a week cause we have
been thru this before when his Naturopath Margo told him to quit eating oatmeal and replace all carbs with veggies.
It seems like a good idea but Jim cannot eat raw vegetables like a rabbit-they have to be cooked so he can digest them
or he can get severe pancreatitis. The ketogenic diet also says eat lots of healthy fats - so at least he can now eat
lean center cut bacon with his eggs in the morning - but he has no gallbladder so too much fat and he is in pain.
Be sure to stay tuned for the next episode of - "As The Stomach Turns".
Tuesday 12/26/17 - Day after Christmas
Ed brought a whole home cooked turkey dinner Saturday afternoon as a surprise. I was in the midst of talking to Jims
sister and cooking his fish and vegetable soup and a pot pie. I really had no plans for cooking anything at all -
was just going to eat fish and vegetables same as always.
I think Jim gets stressed when anyone comes to visit so although he ate his soup and fish
he couldn't manage to eat his pot pie till the next day. He refused to eat turkey cause he now thinks it's bad for you
but at least he ate some carrots and brocolli.
He drinks 2 protein shakes a day to help keep his weight up - it is back down to 120 lbs. as his appetite comes and goes.
The tramadol seems to only keep pain away for 3 hours but he still refuses to take the hydrocodone yet with a nausea pill
before it. That new routine will take time for him to get into. Instead he waits the full 6 hours before taking another
I was able to talk my mom and nephew into coming over for Christmas dinner so that was nice.
Ed put in a nice new mailbox for us as the old one got the mail wet.
This zoloft I'm on makes me tired but it does keep me from getting stressed and snappy.
Am glad that holiday is over - I didn't even feel like shopping online this year - I just did the gift card thing.
Jim did manage to do his caligraphy on two Christmas cards after much prodding. His sister brought over her famous
deviled eggs that he loves and some new clothes. Then he tells her the shirt and shorts he has been sleeping in
for a couple days
is what he wants to be Fried in - that she "better not put him in a suit"...he says the darndest things.
I laughed and asked him which pair of sneakers he wants to wear
and he said he thought he would just wear socks. I try to have a sense of humor when he talks that way - which
may seem odd to some people but he talks about what I have to do after he's gone - how to do things like
the proper way to feed the cats and birds. I just listen and nod my head. He still tries to micro-manage
everything from bed - still very much will not relinquish control of things. So I tell him - you need to drive
your cars so the batteries don't go dead...and he keeps saying - I will - tomorrow.
He's still fighting this with all his natural supplements so he's still in what seems to be the
angrily fighting, life is not fair, stage
and a long way off from acceptance.
Thank you everyone for all your prayers throughout the year as Jim never expected to make it to this Christmas -
his fourth Christmas since his surgery 6/12/2014 - 3 years and 6 months ago. He is still beating the odds.
We are truly blessed to have such caring family, friends and neighbors.
Saturday 12/30/17 - See test results online early
After all these years of taking Jim to many different doctors and facilities I have found that most
have their own online portals. This way we are able to see the results of his bloodwork, PET and CT scan reports,
Endoscopy reports online early sometimes before visiting the dr. Here are some links I've collected over the years.
So if you get tired of waiting for
results and forget to ask for printed copies during dr visits you can sign up yourself online to see your own results early.
Many specialists offices have online portals for their patients now as they are connected to hospitals.
You can copy/paste them into your
browser - I will link them later and probably ad more.
Finally managed to get Jim to take his anti-nausea med and then oxycodone after his Tramadol wears off usually
3 to 4 hours after he takes it. So that is his new routine when the pain comes back -
he takes 1/4 pill at a time so his stomach can gradually get used to it. So far no more
nausea problems. He has been having the shakes sometimes that comes and goes which seems to go away after he eats
a pot pie which is 840 calories. He drinks 2 - 700 calorie protein shakes twice a day w.peanut butter, black seed oil,
green apple, berries and an egg. Trying to keep his weight on along w.his usual steel cut oats in the mornings
and fish and veggie soup in the afternoons. His blood pressure and heart rate is fine. He seems to need more
help in the evenings w.his coffee enemas and throughout the day bringing him all his meals in bed and special distilled
water with baking soda in it. He still sleeps most of the day but did manage to drive his corvette yesterday
to Debbies health food store to get his organic coffee and organic baking soda. I took advantage of his
time away to change the sheets as it is really hard to get him to let me do that. He pretty much lives in his
bath robe in bed, under many blankets, surrounded by his books and cat Mandy and rarely goes outside.
Sometimes he wants his drapes closed all day to keep the heat in and the sun out. Too cold-in the 60's - to do much
gardening but I did manage to trim back all the impatiens, the larger bushes are next.
Finally got him an appointment with a new Oncologist January 5th so he can get his pain meds refilled and possibly
get a Fentanyl patch.
https://midfloridacancercenters.com/ Mid-Floria Cancer Centers
https://secure.seeyourchart.com/ - Mid-Floria Cancer Centers
https://www.humana.com/ - Humana
https://account.ahss.org/ - Adventist Health Systems
https://secure.questdiagnostics.com - Quest Diagnostics
https://umiamihospital.com - University of Miami
https://uhealthsystem.com - University of Miami
https://optimalcare.com/patient/ - Orlando Health - University of Florida
https://orlandohealth.com - Orlando Health - University of Florida
https://orlandohealth.followmyhealth.com/ - Orlando Health
https://mychart.shands.org - Shands Gainesville
https://memberportal.fhcp.com - Florida Health Care Plan
https://fhcp.followmyhealth.com - Florida Health Care Plan
https://floridablue.com - Blue Cross Blue Shield
Sunday 12/31/17 - Happy New Year?
To me facebook is a collection of happy and comedic moments in peoples lives, pet pictures, food and vacation pictures,
with advertising in between. I really have had nothing happy to post on it much for 2017
so just use it for advertising to help myself and my customers. I really don't expect 2018 to be better at this point
as Jims and my mothers condition deteriorates it will only get worse. Mom sleeps alot more now as her
1 kidney is slowly failing. I am so glad the holidays are over. My work online and zoloft helps me keep my mind off the
wonderful future I have in store. I am just being realistic -
people that are terminally ill with pancreatic cancer do not get better and mom is not getting younger or healthier.
The only thing I look forward to is a good cup of coffee in the morning and a cookie and plan on getting a few new roses
this year to replace the ones that didn't make it. I plan to keep on planting pink impatiens all around the fence border
a little at a time so eventually I will be completely surrounded by pink flowers.
May even order a few new pink and dark red amaryllis as they are real cheap now on ebay.
Jims sisters lumpectomy got postponed to January 5th but because she now has a cold may be postponed further.
What they did not test for in her genetic study are the other gene mutations that Jim has that also cause cancer, they are
the FAS, NF1, and KRAS. That extensive testing is very expensive and you can't get insurance to pay for it unless
a doctor can prove it is medically neccessary. So my prediction if she does not do anything
natural to prevent cancer in the meantime is that she will have a reoccurence and eventually
have to get a full mastectomy.
Thursday 1/04/17 - Deep Freeze
Got down to 28 at 3 am last night so covered up all the tropicals and brought the small ones in. Wind and rain was
blowing like crazy yesterday-so glad it finally stopped and dried out. Clear and sunny today.
Interstate in North Florida were shut down because of ice on the road. A huge snowicane is barreling up the east coast
towards New England. It is now up to 50 here at noon - so cold I had to wear my heavy jacket w.hood and gloves to
do things outside like turn off all the water faucets. Jim is all snuggled up under his blankets wearing his
bathrobe as usual watching FOX news and sleeping after his breakfast...no reason for him to get dressed as we won't be going anywhere
until tomorrow am to see his oncologist.
Sunday 1/07/17 - Oncology Visit
Jim was able to get more Oxy but not the Fetanyl Patch - since he is her new patient he will have to manage
w. Oxy for about 3 weeks and then she will consider if he needs the patch. He likes his new Oncologist - real young
- just out of med school - I was surprised because usually Jim does not like women doctors.
He says that's not true but I can tell.
Obviously he only likes the pretty women doctors - LOL. Like the new NP that works at his GP's office.
This one did a good sales pitch on him about Xeloda, a chemo pill he refused a year ago. He said yes to it while we were
there and is supposed to go back Wednesday the 10th to find out his CA-19 score and learn more. It all depends
on if they can get Humana to pay and if he can qualify for assistance from the manufacturer. They couldn't tell him what
the Copay would be at this point. Will know more Wednesday. After we got home and he looked it up online, about all the side
effects like fatigue, nausea and vomiting, peeling on the palms of the hands and soles of the feet, reduced appetite. He
is still considering whether to do it or not. It not only kills cancer cells but also good cells too but they say
having really bad reactions means it is really working well. It is only to slow down the growth of the tumor -
it does not cure cancer or make it go away, sometimes it may even shrink it. Sort of like when they give dogs medicine
to kill heart worms - the treatment can almost kill the dog at the same time. I reminded him of the quote
"What does not kill us - makes us stronger".
Jim is not sure he wants to find out if it may actually kill him quicker than what he is going thru without it. It does
compromise the immune system. I told him that all the stuff he takes is probably like a real slow way of killing the cancer
but it may not be keeping up with the growth of it. He started drinking Essiac Tea before he had his blood work done
there and I like to think that made his blood work come out better than it was back in November. Of course he has been
doing all kinds of things to fight cancer and improve his bloodwork...he changes his regimen so often I can't keep up
with it. A little bit of this, a little bit of that.
His sister did have her lumpectomy on the 5th and went out to eat afterwards, she felt fine and they gave her Oxy for
pain. Haven't talked to her since then - will let her rest this weekend and wait till she calls. So glad this freezing
weather is over - I like the cold but not that cold especially since it may have killed some of my tropical plants.
So far I don't see much damage on the birds of paradise and avocadoes yet but the plumeria is looking pretty bad and of course the bananas
leaves didn't make it.
Thursday 1/11/17 - Great News
Went to see Jims Oncologist this Wednesday and his CA19 score went from 268 November 27th
all the way down to 98 December 8th...we were flabbergasted that it had dropped so much
in such a short time...the only things Jim did different was he started on the
Essiac Tea to kill cancer ...and Bitter Melon after meals for lowering glucose.
His glucose is now within range without even fasting.
Less glucose - less sugar to feed the cancer.
So he is going to continue that as we wait for Humana to approve Xeloda
because it has not been approved for him yet.
According to the dr it may take a month for him to get approval.
Surprisingly the Oncologists office just called to tell me he was just approved for it and his copay would only be $128 for
every 2 weeks he takes it. He is supposed to take it for 2 weeks in January, 2 sets of 2 weeks in February, 1 set of 2 weeks in
in March, 2 sets of 2 weeks in April and 1 set of 2 weeks in May.
At least now he has the option of starting on it when he wants to but he already told the dr yesterday he wanted to see if
his new natural regimen would drop his CA-19 score further first before deciding to start on Xeloda.
And he is now even more convinced not to take it because he feels his
natural remedies are now working. Maybe that is also what improved the rest of his bloodwork.
Wednesday was a very happy day - and I truly believe it was the Essiac Tea that we
have had sitting in the cupboard for over a year and he never thought it would work.
He only tried it as a last ditch effort and remarkably I think that it was what worked.
He had tried it when I first ordered it over a year ago but it tastes awful so he never tried it again until now.
Will be going back to Oncologist in a month for bloodwork again. He says it actually tastes better than the
homemade papaya leaf tea he used to drink before but he doesn't drink it for the taste.
He is still tired and still sleeps all day and has to take his Tramadol for pain but at least this gives us hope
that the tumor may be shrinking. He can't get another CT scan until March.
Jim and I decided to go by his sisters on the way home to tell her about the good news.
Saturday 1/20/17 - Pain is Back
The tramadol seemed to not be working at all this morning so Jim decided to finally start taking
the Oxy regularly...he said his pain was at level 8 this morning even after taking Tramadol.
So he took his anti-nausea medication and then took half an Oxy cause he is so afraid of
them making him nauseas. The anti-nausea medication lasts 6 hours so he was able to take the other
Oxy half an hour later and then more again later till finally his pain subsided. If he would just
take it on a regular schedule instead of waiting for the pain to get worse but he is so hard headed.
He was back to saying he would rather just die than feel this much pain as it was so bad this morning.
We talked about him getting on hospice again but after his pain subsided he changed his tune. His next Oncologist
appt is Feb 2nd so I am again going to ask her to get him on the Fentanyl patch. He was approved
for Xeloda chemo but doesn't want to do it because he wants to see if his CA-19 score has gone down further
on the next blood test.
He sure is wearing me out waiting on him hand and foot lately cause he stays in bed all the time in this
colder weather. If he does go outside it is in his bathrobe. He did manage to do go to Debbies health
food store to get more vitamins but he could of just ordered them on Amazon...I remind him of this but
it gives him an excuse to get out of the house and drive one of his many cars that need to be driven.
He also likes to stop at the Halifax Thrift store near Debbies and buy more books. He has more books
than he will ever read but he enjoys buying them so if that makes him happy - so be it.
I recently got an RV in trade for my VW so that has been keeping me busy cleaning it. Jim now likes it
now that is all cleaned up and wants to keep it here by the house. I was surprised he liked the blue stripes
since his favorite color is red...but I remember he liked the blue on his sailboat - so he likes blue too.
I had gotten a bumper pull back in early December before this Class A and
it just got delivered today so will now clean that one up too
and then sell it as I no longer need it. It just took longer than it should of to get the bumper pull here
so I am stuck with it until I can sell it. Sometimes things don't work out the way you plan them
or life has other plans. Oh well at least now I have a Plan B for Jim and for mom. If Jim ever gets
to feeling better maybe we can go somewhere and if mom gets to feelin worse maybe, just maybe I can
get her to stay here. I still haven't told her I got it - as it will cause her anxiety -
just knowing I have a backup plan makes me feel better though. Plus I have so much more work to do on it and
maybe I just needed a new hobby. This cold weather is great as it is so much easier to work yer ass off
cleaning things without sweating. I'm not even going to cut back all the plants killed by the freeze until
all freezing is over in March. I may have lost my hibiscus by cutting them back too soon.
Sunday 1/28/17 - Got Alot Done
Managed to get the little bumper pull trailer cleaned and sold within less than a week so now I can concentrate on the
big Class A and now have the $ from that sale to do maintenance on it.
Did more cleaning under it so all the storage compartments are done and lids to them clean underneath too - that probably
hadn't been done in over 10 years...
sheesh - I haven't done this much cleaning on anything in ages. I can only spend
a few hours each day mostly while Jims sleeping in the mornings on it. He doesn't like me not being within
bell ring range when he's awake. I'm beat - taking care of Jim, the house and my online work is like workin 24/7 lately.
I finally got time to look up part numbers and ordered everything to maintain that Onan generator that looks like it
was hardly used. Then will tackle getting the engine oil changed, new battery
and whatever else I can afford to get done on it. I've got a long list so this is a very long term project.
I finally told my mother about it but she has no interest and I really don't even want her to see it yet as
there is still so much to do. Jim likes it and comes out every now and then to advise me on how to do things
and what I should not do and let him do.
I have to bite my tongue since he's not lifting a finger to help me out at all- just likes to act like he's in charge.
He keeps telling me what he's going to do because he thinks I should not attempt such things myself
since he has soooo much more experience at it like caulking for instance. So I have set aside a box full of various
caulks and caulking guns should he ever get in the mood to do so. I will just feel lucky if no leaks appear after
this hard rain we're having tonight.
In the meantime I am hoping this strange burning sensation on the soles of my feet will go away that just started today,
as I've never had this happen before. Could be from forgetting to take my thyroid pills or from too much
squatting to clean things. My calves are sort of aching too. Stretching my legs and feet like it says to do for
Plantar Fasciitis didn't help at all but will keep trying. Luckily we have plenty of pain meds. I'm due for
my yearly bloodwork before I see the dr the end of Feb. - just gotta get around to getting over there.
Jim says he's gonna go to Quest for more bloodwork this week cause he wants to skip seeing his Oncologist
Friday as he feels it is a waste of time and money. I am able to get his bloodwork results online from Quest
without us having to see a dr at all. I told him that even though he refuses to do the Xeloda chemo he could still
get the Fentanyl patch from this oncologist so he should just see her for that. He says no - he will just
take the Oxy when his pain gets worse which it does from time to time. So next time he starts complaining about
pain and the meds not working - I will just remind him that he has to go see his Oncologist if he wants something better.
So stubborn and not thinking down the road - would be better for him to have the patch set aside in case he needs it
but Jims mind is not wired that way. Big Sigh.
Thursday 2/01/18 - Just as I had Suspected
Jims CA-19 score is now up to 461 - according to Quest results I was able to just now see online
- on 11/27/17 Quest shows it was 268
- so the test he had done at the oncologists last month that said it was 98 was totally bogus
- she uses Labcorp - mom says never use Labcorp as she has had skewed results from them
- I will be calling his oncologist tomorrow to talk to the nurse about this huge discrepancy
...I knew when the test went from 268 down to 98 in 1 month that something was not right.
It just gave him false hope - for a couple days psychologically he felt better but he has not been improving...
he has been getting sicker and needing more painkillers and so now this shows
that he really is getting worse.
I am so mad at that oncologist for not requesting a retest and acting like such a huge
discrepancy was normal.
Jim cancelled his Friday appt w.her today as he refuses to take Xeloda so no reason to see her and pay $40
for bogus bloodwork. From now on out all she's good for is getting painkillers.
So Jim is on his own. He is still going to drink his Essiac tea every night in the hopes it slows things down
along with all the other nutritional supplements and special diet.
On another note at least after a few days of taking it easy the pain in my legs and feet went away...must
of been from too much stooping down. Gonna go to my moms tomorrow to give myself a break from Jim and the RV.
I was going to do an oil change on the generator but then discovered the fuel pump needs replacing so have to
order that first.
I got a nanny cam on Jim so I can keep an eye on him while I'm gone and check on him anytime and ask if he's ok...
already tested it out - at first he said no but I promised to only use it when I'm gone or outside alot.
I reassured him it is pw protected so only I can see him laying there.
Wednesday 2/07/18 - Still No call back from Cancer Center Administrator
We called Jims Oncologist to see if he could get a CA-19 retest at no charge because he feels the results
from their last test were erroneous. The lady that runs the lab said we had to ask the Administrator so we
did leave a message with his manager but have not heard back.
Monday after 3 visits to CVS finally got the new 4 a day Tramadol prescription filled so now he won't run
out before 30 days. I have a bone to pick w.them but they finally got it right this time. I found out I could
of had the 4 a day prescription filled last time but they didn't tell me it was called in. I had to find out
by calling his NP back again and she told me. Grrrr.
Since Jim had run out of Tramadol for just one day and had to take Oxy he has come to the conclusion that it hurts
his stomach too much and refuses to take it again.
After doing my usual online work today I had a fun day researching La Mer Blue Heart Creme Moisturizer
for my sister on Ebay and learned about the resale market for beauty product containers - fascinating.
Well at least it's more interesting than writing about some of the drier stuff that is my bread and butter.
I got so into doing research I never got out of the house to work on the RV some more. My arms were kinda
worn out from trimming back plants the day before anyways.
Wednesday 2/14/18 - A Memorable Day- but not in a good way
Well I certainly won't forget this Valentines day because of the massacre at a highschool in Broward County.
I will also not forget it because we were planning on going to Longhorn Steakhouse, only because we had a
gift card from reward points on one of Jims credit cards. Well he decided to go to Wawa all the way
on Enterprise to put non-ethanol gas in his BMW. I noticed Olive Garden was right next door so said - hey lets go there
- cause the card was good for that too. Meal was fine, Jim was his usual picky self and decided on vegetarian pasta.
I said you can get the sirloin cause I thought he would go for steak since we were originally going to a steak place.
We never eat steak at home and he eats vegetarian soup every day.
He told the waitress about his not being able to digest fat and so she highly recommended it. Then she told
us about her husband who also battled pancreatic cancer, he passed away 5 years ago and
she still keeps all his clothes and shoes in the same place. I was shocked - what are the chances of that happening.
I mean how weird is that - to meet a total stranger whose husband had the same malady. I wouldn't say it made my day
and actually made me feel more depressed. I took a zoloft as soon as I walked in the door and Jim continued his usual
coffee routine. We never have dessert cause Jim can't eat sugar - oh well - it keeps me slim.
I think the highlight of my day was finally getting to pickup the transmission fluid for the RV that finally
came into walmart earlier. So now I can pour a quart in at a time tomorrow and start it and check it to see
if it leaks. I'm actually looking forward to doing that - pretty sad but it gives me something else to think about
not related to people that are sick and dying. Oh and before we started eating I gave Jim a card and he said
it would probably be his last Valentines day. He says the same thing at all holidays too - so I expected that, but
it is always so hard to pick out cards for him knowing it may be his last one each time. I now hate Valentines days as much
as I hate Thanksgiving, Christmas and New Years. I would be much happier if there were no holidays at all really.
Less to remember and less to forget. Yes I had to make him smile for these pictures cause he is not the smiling type.
He usually has that pained worried look.
Friday 2/16/18 - Visited Mom
Put the nanny cam on and kept an eye on Jim the whole way to my moms-he slept the whole time I was gone and
didn't wake up until 4 pm when I got home. He could barely eat a bowl of soup as he was nauseas so took some nauseau medicine and then
laid there in pain until he took his Tramadol at 6:30 pm. Then finally he had a protein shake to see if his stomach
would settle down. I think if he sleeps too much and doesn't eat, too much acid builds up and makes him nauseas....
or as he says it could be the cancer. I found a nice oatmeal disaster all over the burners on the stove
when I started cooking dinner. He admitted to letting his oatmeal boil over right after I left. I just can't leave him alone
anymore or he's gonna burn the house down one of these days. I think once every 3 weeks to visit mom is going to be
about the best I can do.
Oh well at least I got moms roof leaks fixed w. peel and seal and did my usual cleaning.
She got the neighbors to help put in the ac unit for her bedroom that we got her for Christmas cause Ed just didn't
have the time to do it. It's getting in the 80's now so I think that we've seen the last of cold weather. I was
hoping it would get cold just one more time like it usually does before Bike Week cause I know that after
that it never gets cold again.
Saturday 2/24/18 - Oatmeal Surprise again
Well luckily I was here when Jim did his usual routine of putting oatmeal on and then letting it boil over
cause he doesn't want to be bothered w.spending a few minutes in the kitchen waiting for it to cook.
He insists on eating steel cut oats and he soaks them overnight but he just cannot be trusted
not to leave things on the stove. He is on so much pain medication his memory is shot and sometimes he just forgets
and goes back in the bedroom to lie down and falls asleep. I have explained this to my mom so she realizes I just
can't visit much. My sisters don't understand this and still can't understand why I can't just take a few days off or
go anywhere. Jim does not want a sitter as he spends all day in his bathrobe and underwear
and they would be bored anyways as he sleeps most of the day. I may have to get
another camera for the kitchen cause although I have a camera on him in the bedroom - that does no good
if he has a pot sitting on the stove and I don't know about it. We have no homeowners insurance cause we can't afford it
so that is why I cannot leave him as I don't trust him not to burn the house down. He is constantly leaving burners on
for me to turn off. If anything happened we would end up living in the RV then back up at my house.
So I just want to let everyone know - I really can't leave here and when I do it stresses me out
- do you understand cousin from NH - that if you come
to visit I cannot leave to be gone back over to my moms but for a few hours to do cleaning.
It is easier on me if you come here to visit as my mom suggested we could go out to eat here close by.
You can even spend the night in the guest bedroom and mom can stay there w.you or in the RV. She does not have to
rush back home - that is just the way she is. And it cannot be on Moms scrabble day on Monday either.
In the meantime before you get here in April I am going to get another camera for the kitchen
- I know just where I'm going to plug it in.
To save time on grocery shopping I am now ordering the bulk of my
groceries from walmart online and drive thru to pick them up to save time on shopping. I also stock up more on
what I can't get there when I go to Publix such as for Jims special Ezekiel bread, Slimcadoes and green apples.
I don't mind being here all day as I am used to working online all day from home anyways so
don't feel like I am missing anything at all by not being out and about. When I lived in my home
I was in a very rural area out in the middle of nowhere and really enjoyed that I had fences and gates so people
couldn't just drop by unannounced - such as the Mormons who drop by here that don't see the No Soliciting sign on the door - for them
I created a larger handwritten sign. It wakes Jim up if the doorbell rings or someone knocks
so I really try hard to not have that happen.
I feel like I get enough socializing from
talking by email and I am not a social person anyways - my parents were the same in that regard. Plus from my past work
in bars I had to be really sociable so I think I met enough new people to last me 3 lifetimes. So don't worry
about me - I'm sort of a rural isolationist - used to getting by, stocking up and rationing.
I only carry the phone
around because I have to answer real estate advertising calls and from customers mostly. I am not lonely
at all - I am very much at peace with myself and have way more than enough to do to keep me busy. Luckily I did
lots of partying and traveling when I was younger so don't feel like I am missing out on that at all.
Nancy Reagan took care of Ronnie for 10 years with Alzhiemers and she is my heroine for being able to do that
...it's an amazing story. He didn't even know who she was in the end but she was always there by his side.
I just feel guilty that I can't be up in Crescent City helping Ed with yard work like I used to or over to see my
mom more often.
Jims weight is around 122-123 lbs now - he doesn't eat as much as his appetite comes and goes along with nauseau every now
and then - he sleeps until 4 pm. He is due for a Scan in March and more blood work but I don't expect any improvements since nothing
has really changed at all. There is nothing that they can do at this point.
Sunday 2/25/18 - Pale stools happen
Jim woke up at 4 pm today to show me he had sort yellow and pale white stools. This is a very bad sign as we both know it means he is
becoming Jaundice. It may mean liver metastatis - meaning the cancer has spread to his liver or he has a blockage
in his bile duct. The blockage would be from his existing tumor that we already know is wrapped around
his portal vein area. There is no way to stop the spread of his cancer. He is way to sick to take Xeloda which
is an oral chemo they tried to talk him into which he refused. He will just keep on trying to flush his liver
using coffee enemas - which he does every day and
firmly believes that is what has made him live as long as he has with this type of cancer.
I had made a roast the day
before and he finally ate some of it w.potatoes and carrots and I am hoping that helps. He also has a pot pie waiting
if he gets more of an appetite but the most he would do is drink his protein shake.
We were both very quiet in the kitchen today because we both know what Jaundice means. He does not
appear yellow in the eyes or on the skin and no itching - which is good. Gotta call his Gastroenterologist tomorrow to see when that
CT scan is going to be setup. In the meantime I have to see my GP in the morning for my yearly visit. Will have
the camera on so I can keep an eye on him while I'm gone or maybe I can get him to go with me.
Monday 2/26/18 - Gastroenterologist Ordered Blood Work
While I was on the way to my own yearly drs appt I was waiting for Jims Gastroenterologist Nurse to call.
Had to explain to my GP I was waiting for a phone call while sitting there in my paper gown.
And sure enough they called while I was putting it on and said Jim needed to go to Quest for blood work
and that they were going to fax the order to them. So as soon as I got home, even though he was half asleep
I let him know he needed to go get that done. He was too tired to get up and said he would go at 2 pm.
They had told me the lab may say they didn't have the fax yet when we showed up but
for them to look in their email so I decided to sit there and make sure they had his drs orders for tests.
Glad I did cause Jim doesn't realize the flu is still prevalent and he needs to use the antibacterial gels everytime
he comes and goes out of that lab...I hope it sunk in as he doesn't need to catch the flu.
Then I went to Publix next door for stuff I can't get at Walmart online grocery shopping like those large Avocadoes and
Granny Smith Apples which are the only kinds he likes in his protein shakes.
So glad to get that done then came home and made him late lunch early dinner. I will be checking daily for his test
results online as I am able to get them faster that way than waiting for a drs appt. The Dr will probably
have his nurse call after he looks at the results. I had a conversation with the nurse before I left in the morning
about wether their drs would be able to put a stent in his bile duct since he already had a Whipple which makes
his plumbing different. She said it may require specialized surgery at their facility in Orlando. I am most concerned
about his low platelets as they were quite low on his last test 1/29/18 and if too low would preclude him from having
surgery lest it cause internal bleeding.
I am guessing the GI Dr wanted tests on his liver and kidney function to try and find out what is causing these symptoms
he's been having as mentioned in my previous posts. Suggested Reading per Forums I've visited: Last Stages of Pancreatic Cancer Final Days Final Gifts - book written by 2 Hospice Nurses as suggested
reading on a cancer forum I check on. I regularly
check on other people on the Pancreatic Cancer Forum on
to see where they are in their journey as compared to Jim as that is all I have to go by.
As a final note on how I cope - my GP did suggest I start taking my Zoloft differently so I am going to try
2 at night before bed as it really does make me tired when I take it during the day and 1 before the most stressful part of
the afternoon before Jims wakes up. It keeps me calm, patient and more tolerant, more even keeled emotionally - it gives
you emotional numbness so you don't feel like crying or screaming at someone you love.
Saturday 3/3/18 - Blood Work Results
According to Jims Quest Report for blood drawn Monday 2/26/18 his Bilirubin is within range so he shows no signs
of liver problems. His kidneys are slightly out of range. His stools now appear normal so we are not sure what caused the pale stools.
His CA-19 is up to 493 - it was 461 on 1/29/18 - 28 days ago. He sleeps until 4 pm each day. Still has no appetite
and is down to 119 lbs which is not good. Has pain 24/7 and the Tramadol doesn't seem to work as well as it did.
He still refuses to take hydrocodone for pain because it upsets his stomach even after taking anti-nausea meds.
We were waiting for a CT that was requested to be done March 5th and still have not heard back from anyone about that.
I have a feeling his GI Dr can no longer order it because it is not medically neccessary but Jims appt to see him is not
until the 28th. I setup an appt on 3/19 to see a new Oncologist because I am still trying to get him the Fentanyl patch
because he needs something stronger for pain. His Oncologist is on maternity leave for 2 months and won't prescribe it
unless he comes in so I setup an appt. with another Oncologist just to get better pain meds for him. I explained to Jim that
if he has really bad pain that none of his medication works on he will end up in the ER. They will admit him - put him
on Morhpine and then move him to a Hospice nursing facility so he can continue to get morphine.
Then he would have to wait for Home Hospice Care to be setup in order for him to get morphine. So I explained to him
that this circus could be avoided if he would just setup Hospice now which takes about a week to get nurses scheduled to show up. Then he would not have to rush to the ER and would get all the pain meds he needs
and a nurse coming quite often as needed. He did not want to hear that - because talking about it stresses him out
...but a few hours later he came out of the
bedroom and I was surprised he said he realizes getting another scan will not make him any better and that he is now considering
hospice so he can avoid going thru an ER visit to get pain meds. I still have to find out
if he will be allowed to get blood work done at least so he can see how he is doing - as that is important to him.
Now that he is down to 119 lbs today and that I had already figured out a long time ago that 118 lbs
was the point of no return -
he is starting to realize that he needs to come to grips with the situation. Acceptance is very hard. I just hate
to see him laying there in pain when he does not have to be. It will take some time to figure out what level of pain
medication he will need as I read that is the hardest part. At least he came up with the idea of getting on hospice
on his own...
since I painted a picture of what could happen if we didn't set it up ahead of time. The idea of ending up in the hospital
and then a hospice facility for a week just to get on better painkiller makes no sense at all. I don't think he can wait
until the 19th to see the new Oncologist so I can again beg for a Fentanyl patch for him again. So we shall see
what he decides to do on Monday. I will again call his Gastroenterologist to see if he can still get a CT
scan since that is so
important to him and we will go from there. I will also call Halifax Hospice and ask if he can still get blood work done
after he is on Hospice care - would be nice if they could just draw blood here at home instead of him having to
go to Quest once a month. I read about a pancreatic cancer patient I had been following on the forums that was in
hospice for over 6 months - so just because someone agrees to being on hospice doesn't mean they are going to die that soon.
Some people have been under hospice care for up to 2 years. I think not having to go to drs appts anymore actually
will relieve some of the stress. Just getting him to let me feed the cats and birds is hard enough for him to do.
He is still having a hard time of letting go of being responsible for things.
He can still get up and make himself Oatmeal
in the morning and make it to the bathroom ok on his own but I told him when he can't that we will do just like we did
when he got out of the hospital and he can have the portopotty next to the bed and urinal. Been there - done that.
The hard part will be that he is probably addicted to coffee enemas and has to do that every afternoon or he feels miserable.
It will be tougher if he needs to continue doing that and refuses to do something else to relieve constipation.
I imagine the morphine will probably clog him up so I am guessing he will expect to continue that routine.
He is resting quietly now still and I made him a roast again as he is tired of fish and vegetable soup - so
hoping he will be able to eat when he wakes up. He didn't eat his pot pie yesterday and only had his oatmeal and 2 protein
shakes so not enough calories - barely 1500 calories I would say. As soon as he woke up today I put a plate
of meat and potatoes in front of him and he ate it - so finally his appetite is back...but the pain is still there.
I did finally get a motion detection camera for the kitchen and set it up to face the stove so it alerts me
when he is in the kitchen - I can actually see if all the knobs are off-it comes in real clear. So now when
I do get a chance to go to my moms I can really keep an eye on him. It even will do a 360 pan, zoom and audio so
I can yell at him in the kitchen to turn the burner off.
On another note Ed came down to help put in motion detection lights outside for me. We had a breakin - in the
neighborhood so I plan to put up a battery operated light along the fence also. We are still waiting to see if these work
right after dusk cause the first one I bought from Lowes the sensor didn't work. He also removed the fuel pump on the RV generator so I could order a new one,
removed the front door handle on it so I can order a new one and replaced the oil filter. I got more peel and seal for the
roof and 5 gallons of thick white reflective sealant to reseal it.
Will give me something to do besides yardwork while Jim is sleeping. Hope it stays cool for awhile. So funny my cousin in NH
wants to go somewhere warm and I am hoping it stays cold - she is not enjoying the Snowicane they are having up there today.
Monday 3/5/18 - Dr Calling Day
Will be calling Jims various drs today and waiting for calls back from their nurses.
He usually sleeps till 4, eats then does his coffee thing so hard to say when
he is awake and can handle having visitors.
At least his sister, when she showed up at 2 pm Sunday caught him awake
for about 30 minutes, I was able to get
him to eat some roast and potatoes - then he went back to sleep till 5.
Going to be tough to figure out what time would be best for a hospice nurse to
come by without waking him up. He does not like noises or to be woke up
so I try to do anything noisy like vacuuming, leaf blowing later in the afternoon
at the end of his sleep cycle. I know he is feeling worse cause now he prefers I feed
the birds and cats. Has taken him awhile to trust that I will do it exactly the way he wants it done.
Monday 3/5/18 - Answers Back
Finally got the CT scan appt for March 12th-surprisingly the Gastroenterologists nurse replied today so was able to
get that setup after a few back and forth calls - had to get them to redo the order to include
his lungs as we are trying to find out if it has metastisized. Jim says it is more common for it to
spread to the lungs first according to his research. I was under the impression it spreads
to the liver first-but they will be scanning everything now so we shall see. We still have to wait for Humana to approve
the scan but at this point it is scheduled.
Talked to Halifax Hospice and was disappointed to not get any
answers unless I let them come over for a consultation. Called Florida Hospital Hospice and got a more intelligent
and quick to answer my questions person...but was disappointed to find out they do not do blood work if you are on hospice.
For instance Jim wants to know his CA-19 to see how bad he is getting and she said - that is considered aggressive care
which does not fit in with hospice care. At least I found out the director of each hospice is the one that
dishes out the meds - you don't have to get an order from your own drs for that. This was important because I am
getting nowhere getting betters pain killers. However after finding out that I am guessing both hospices will
not do a CA-19 blood test - I am more inclined to try to get Jim to see this new oncologist on the 19th to see if
he will prescribe the Fentanyl patch and maybe even Gabapentin for pain. This way Jim can continue to get
tests done if he wants. I also found out that the respite care goes 2 ways - either I bring him into a facility so I can
take a few days off or I get a volunteer to sit with him for a few hours at home. A few hours does me no good as
the cameras can handle that. So no hospice worker or volunteer does overnight stays in home
- for that you have to pay someone or go to a facility. Ed said the palm trees can wait - so I guess they will have to.
I will still visit my mom while he's sleeping and keep an eye on him on the cameras.
I ordered more solar motion detection lights and will see how well they work as may order more.
My ongoing project is cleaning the top edge of the RV to get it ready for painting with sealant all around the edges.
So glad it is cool out still.
Jim must be feeling better after having a roast and pot pie today because he is busy cleaning his own shower
this evening. Sometimes if he eats well and has no pain he gets a little motivation. So glad he is able to do that.
Tuesday 3/6/18 - Pain & Nausea Today
Jim is still trying to kill the cancer - he took a teaspoon of apple cider vinegar in water today and ended up making himself
nauseas. He does what he wants and learns what he should not do. I called the Oncologists office again to see if
I can get him an earlier appt with any Oncologist just so he can get something better for pain. I'm not going to call
any more hospices again as he doesn't like that they don't do bloodwork at all.
Saturday 3/9/18 - My new earlier wake up time
For the past few days it seems I have been getting up around 6 am because that is when Jim gets up to cook his oatmeal
and now I have to keep an eye on it while he goes back to lay down. I've been used to sleeping until about 7 so
am not real happy about this earlier routine. He says the cat wakes him up but he has been waking up early for a long
time... cooking his own oatmeal, and then going back to bed. He would feed the cats later.
I just didn't have to cook oatmeal for him before. It was so nice sleeping until 7 and having my coffee first and him
feeding his cats himself later in the morning. He can't do any of it anymore so as soon as he gets up I have to get up
and while I'm waiting for his oatmeal to cook I feed the birds, cats, dog while drinking my coffee. He will only eat steel cut oats
which take a while to cook - won't eat quick oats as he says they are higher in carbs. His appetite is good in the morning as after his protein shake
and oatmeal he has 2 slices of Ezekiel bread w.thin provolone cheese and granny smith applesauce as he is trying to
get some weight back on but eat low carb low sugar. It's sort of like eating like a diabetic because his pancreas
does not create enough insulin anymore but he is not diabetic enough to where he has to be on insulin.
It's ridiculous to get up this early when you don't have any place you have to be.
At least I got him to eat quite a few bowls of beef stew today along w.his 2 protein shakes for the day.
He is still in pain all the time as the Tramadol doesn't work as well as it used to.
Will be going to get his CT scan at noon on Monday. I haven't heard back from oncology about
getting him an earlier appointment so it will be 9 more days before he gets to see a new one. I told them ahead of time
it was strictly for pain meds so they would stay focused on that. My mom said that they have a morphine suppository
for people that have too much stomach pain and nauseau. I hope the Fentanyl patch will work for Jim but I read it can also
cause nauseau. He is not ready to call hospice yet because they don't allow blood work so Jim would have no way
to find out how he's progressing - so trying to get better pain meds from an oncologist is the only thing left to do.
If what we get from this new oncologist does not work then hospice at home is the only thing left as they are the only ones
that can give him morphine.Typically your doctors have nothing to do with you and you can't call or see them anymore
once you are under hospice care. You also have to sign something that says you will contact them first in case of
emergency as they have to determine if it is actually an emergency or that the patient needs more pain meds.
I had heard bad stories about hospice nurses not geting pain medication to patients on time and them left suffering for hours
waiting so to me it makes more sense to get as much as we can from the oncologist first. My mother who was a nurse for
40 years said she had even ran across younger hospice nurses that didn't care about making patients wait for them
to show up with their pain meds. You can't really choose who you get, and although they may seem nice at first
you don't really know what's going to happen until it does. I do not trust the Medical System to work smoothly
because for us it has been a very bumpy ride. The last thing I need is for Jim to be in pain and us waiting for
an unempathetic overworked underpaid seemingly sympathetic nurse to make him wait till they get around to see him.
Sunday 3/10/18 - Pancan is a racket setup by Pharmaceutical Companies
After all these years of visiting hospitals to see if Jim could get into clinical trials and being turned down
because he did not do standard of care chemo first I have come to this conclusion. Pancan.org was setup
by Big Pharma to help people find clinical trials. The majority of clinical trials are for chemo and radiation. If you do
what Jim did and refuse chemo and go the natural route you can't get into clinical trials. If you can tolerate
the chemo and are still in good enough shape from my point of view, you probably would of lived just as long
without the chemo...you just didn't know it. So you get pushed into chemo because it is a big moneymaker
for the cancer centers and hospital and the pharmaceutical companies. Your copay is about $200 per visit but
the hospital gets to charge the insurance company a whole lot more so that's where they make their money.
I recall seeing $17,000 charged to Shands for Jims 1st 2 chemo visits back in 2014. The chemo visit to smaller
cancer care clinics costs less but it is obvious that their big money maker is their daily influx of cancer
patients coming to sit in their infusion centers.
It is actually easier to go to an infusion center once or twice a week than it is to totally change your diet
and take nutritional supplements like he did. Jim always had the choice of doing chemo but feels strongly that he would
of died sooner had he done that. A handful of men that had the same type of cancer as Jim and whipple at the same time,
that I had been following on the forums who did chemo have already passed away.
The standard of care chemo for pancreatic cancer is Gemcetabine which for his
type of adenocarcinoma (KRAS & P53) according to the Foundation One report - could actually make it worse. So based on that
he feels even better about his decision not to do chemo. He feels he has not suffered as much as those that chose to do chemo
and had a better quality of life. I know that if you have been reading this over the years it would not seem that way
but I have read the posts from other pancreatic cancer patients.
I plan on documenting every detail I can so that other caregivers of pancreatic cancer patients will have a better idea
of what to expect down the road. I haven't really been able to find anything online that deals specifically with caring
for someone with pancreatic cancer that is in the end stages. So now everyone on the Whipple Warriors forum will have
some first hand knowledge about what to expect. I have read many hospice books but none that deal specifically with
what it's like to take care of someone with end stage pancreatic cancer.
Friday 3/16/18 - Still no call back from nurse
I left a message for Jims Gastroenterology nurse to call me back Monday the 12th, then Tuesday, then we went over in person
Wednesday and showed them his CT Scan with the miraculous Pancreas: No Mass. The administrator took it and said
they would have the radiologist write a new report. Personally I think it should be a total do-over and that the dr
should order another scan at their expense. So we are still waiting for a phone call to let us know when that is done.
Monday the 19th at 10:15 we see Jims new Oncologist just to see if we can get him the Fentanyl Patch or some suppository
for pain. Also plan on having their lab do his bloodwork and especially CA-19 score so we can see if
they come out with the same erroneous result or close to what Quest came out with. We won't get the results
for the CA-19 until 3-4 days later. If their result
is way off again I am going to Payus, Payus and Payus right around the corner. I don't care if it takes 5 years
I will sue them from here to China. All the chemo patients that come in there depend on correct results because
that is the only way they can tell if the chemo is working. If they are showing low scores-it actually makes the chemo
patient think the chemo is working - even if the lab work is bogus. So this does not just affect Jim - it affects
everyone that comes in there that needs a CA-19 test. (cancer antigen marker test)
Just got back from visiting my mom today and found out not only did she sprain her ankle this past weekend but
fell down the following morning again trying to go to the bathroom at 3 am and had to call 911. Fire department came
and lifted her back into her lazyboy so she never made it to the bathroom on time
- there was plenty of laundry to do when I got there today.
Also got her groceries and did my usual cleaning - not as much cleaning to do since I was just there last Thursday.
I told her she can come stay here but she won't have any of that - she is able to limp around with her cane
as her sprain is healing. I am going to try and see her again next Friday. My siblings are useless even though
I begged one sister that I thought could make it down here to come down and help out - offered her the moon and she said no
...oh well I tried - that's all I can do.
Sunday 3/18/18 - Seeing New Oncologist Monday Morning
Jim has a 10:15 am appt to see a new Oncologist
that I am hoping will finally give him the Fentanyl patch
or some suppository pain medication. He is having more pancreas pain
even soon after taking Tramadol today...I knew it was going to get worse.
We saw his GP on Thursday and I let her know we were thinking of
palliative (pain) care - similar to hospice thru the one listed in Jims Humana booklet
called Vitas...I had talked to a nurse when I got my mammogram whose husband
has Parkinsons and Vitas is taking care of him. So getting a recommendation from a nurse whose husband is under
their care makes me feel better. She said they do bloodwork
which is better than Halifax Hospice and Florida Hospital Hospice which told me over the phone they do not do that.
We are waiting for a redo on his CT scan because he just had it done and the results were
not clear enough so we are STILL WAITING for a new report. His appt. w.his Gastroenterologist that ordered the
CT Scan isn't until the 28th (in 10 days) so I am really wanting to get him some pain relief so he can make it to that appt.
After he signs up with Vitas I think he won't be able to see his Gastroenterologist anymore so I think seeing him this month
is important. His GI Dr is probably the only one that he actually trusts and I think it would
mean alot for him to be able to see him again to talk about that CT scan. If this Fentanyl patch works
than maybe he can have less pain for the next 10 days waiting for that appt.
Jim was in so much pain today he could hardly eat and says he is ready for palliative care
because he really needs it. We don't call it Hospice - it is called Palliative.
I think this will be the last ct scan as I don't think
that they will let him have any more after he signs up with Vitas. At least his GP is now on the same page
since our visit last Thursday.
So all I have to do is call her when he is ready for Vitas to come visit.
It is a big emotional decision for him because it will mean no more dr visits and that he needs to accept the inevitable.
I think that after he gets some relief from this pain and doesn't have the stress of drs visits anymore that
he will gradually be able to relax more. He already said today he wishes he could just drop dead because he
is so tired of being in pain. He quit taking his Sertraline a few weeks ago so the anxiety and agitation have returned...
he can't tell but I sure can.
Monday 3/19/18 - Yeah!!! - Finally Got the Pain Meds
The only way I could get Jim to go to the Oncologist today was by telling him I would pay the $40 Copay
because he just did not want to go. I am so glad we did because we finally got a doctor that gave him not only the
Fentanyl patch but also a new stronger pain pill.... picked them up today as I am really looking
forward to getting him some relief.
I also got his bloodwork done again including his CA-19 so will know in few days what that says.
Still waiting for a response from his GI dr about that CT scan but he sees that Dr in 9 more days so I imagine
it will have to wait until then.
Jim also asked this new Dr for a DNR (Do Not Resuscitate) on yellow paper to tack on the wall
- he walked out into the hallway and asked for it himself and the Dr came into the room and
told him that the yellow paper was no longer neccessary - that just him asking for it was enough and her documenting it in
her dictation notes. But I wanted that yellow badge of courage for him to put on the wall.
We told this new Oncologist that we had talked to his GP about palliative care thru Vitas but explained we were
still waiting to see his GI dr on the 28th and to find out more about his CT scan which we gave them a copy of.
So now 3 doctors have that scan in their hands. My next accomplishment will be to get the new CA-19 score in a few days.
So we shall see what that says...as she rubs her hands together and grins....
- Mwahhhhhhaaa...Mwahhhhaaa....Payus, Payus and Payus here we come.
While Jim was doing his coffee thing his Gastroenterologist called to tell him that the reason he
could not see anything on the
CT scan was because his tumor is so much a part of his tissue they can't differentiate which is which.
He told Jim that in May he could get a Petscan - so that was the end of that issue. No redo - Jim was just happy
the Dr actually called him instead of the nurse and was happy with the explanation.
I was not happy with that explanation but that doesn't matter as long as he is happy
As for the new medication for pain...
First we waited till the Tramadol that he took at 10 am wore off and his pain came back around 4 pm - had him take a
nausea tablet - waited a half hour then I gave him a
15 mcg morphine tablet per the pharmacists instructions - then I waited an hour to see if it made him nauseas
and it didn't so then put the 25 mcg patch on him.
It has taken a few hours of listening to him whine that nothing is working but finally by 8 pm his pain is better.
The patch is a 3 day time release of the weakest version and the tablet is for breakthru pain and can
be taken every 6 hours. His pain is finally down to a level 4 for now.
He took another tablet 6 hours later at 11 am and then his Lorazepam to help him sleep at midnight.
We have to see the Oncologist again on May 3rd to talk to her about the pain management.
I have read it takes 24 to 48 hours for the patch
to kick in so we shall see by tomorrow.
He is back to drinking his Essiac tea as he thinks it is working. So we won't be calling Vitas anytime soon as long
as we can manage the pain ourselves with the new meds. His weight was 120 lbs at the drs office but at home it gets
down to 118 lbs.
Tuesday 3/20/18 - It Must be Working
I think the patch is starting to work because he woke up and fed the cats himself. He said he woke up around 4 am
but can't remember if he took another morphine tablet so we are going to wait and see if pain comes back around 10-11 am.
His speech seemed kind of slurred. The patch is supposed to work on it's own and the tablets are for breakthru pain.
It would be great if he didn't need to take them - we shall see. He said his pain level was at 4 this morning.
Wednesday 3/21/18 - 2nd Day on Patch but still has pain
This is day 2 of the 72 hour (3 day 25mcg) patch. He still has to take the 15 mcg Morphine every 6 hours.
So we have determined that this patch may not be strong enough. Will see how it goes tomorrow as they say
the 1st patch takes 72 hours to get into your system. He had a headache this morning which is one of the side effects
of the 2 things he's on.
Today Jim asked me to get him a Big Mac and hamburger - he hasn't had Fast Food since he ended up in the
hospital in May 2014 after eating a Big Mac. So we shall see how his body handles this huge amount of
fat. He does need the calories but he says it doesn't taste like he remembers. He thinks his taste buds are
different since he has been on so many medications over the years.
He said this was his last meal - so he wanted something he liked. Of course I know it's not - he just says
things like that. He is just tired of eating healthy I guess until his stomach turns on him.
He says he feels really out of it but he knows the Tramadol was no longer working and this new regimen
is really the strongest thing he can get. The only difference is with hospice they may give
you IV morphine in stronger doses to ease pain. When we see his Oncologist she may up the patch and pill dosages
but they have to start off with the smallest amount first and go from there to see how well it is tolerated.
Wednesday 3/27/18 - They said Double Dosages
When I was finally able to talk to a nurse from the Oncologists office she said the Dr told her to tell us
to double his dosage. So he is supposed to wear 2 of the patches and take 2 tablets.
After I put on the 2nd patch he started to feel better and only has to take the tablets once every
6 hours but at least now we know he can take them more often if needed. I suggested we put another patch on him
but he wants to wait. He didn't want to see the Dr on Friday so I rescheduled him to Monday April 2nd.
He wants them to just refill his prescription over the phone but they can't do that - he has to go in person
for this type of prescription. I told him if he was on hospice he would not have to see drs anymore
and would pay only a $5 copay for his pain killers so he is thinking about it. He doesn't like paying
the $40 everytime he has to see his Oncologist and on the phone the nurse said they may have to refer him
to what is called a Pain Managment Place to get his prescriptions since he is not doing chemo. It is a pain clinic
where you fill out a huge stack of paperwork in order to get your pain killers and you pay a $40 copay
and have to go in once a month to get a new prescription. Since they are narcotics they give you a paper script
that you have to take to the pharmacy. Jim can hardly sit in a drs office for 10 minutes as he is used to laying
down so I can't see him going to a pain clinic. I found out Vitas does not have palliative care - only Hospice
and in fact there are no palliative care businesses in Volusia at all - only hospice. Oncology didn't know what
palliative care even was - they just refer you to a pain clinic. PRC is the only pain clinic nearby that
his insurance will cover and Jim swore he would never ever again set foot in that place. So he is coming to the realization
that the easiest and cheapest way to get his drugs is thru hospice. If it weren't for that GI dr he would of
already changed to hospice but that dr told him he could get another Petscan in May - well the truth is it won't be 3 months
until June 12th so I don't see how it could get done in May. So right now Jim has alot of thinking to do because
if he doesn't get a new prescription from his Oncologist when we go there on Monday he will have to go to the Pain clinic
because he will be out of Morphine by Friday. I am trying to get him to realize he needs to get the ball rolling
on hospice asap so they can get the paperwork done so he won't have to go to that pain clinic.
I will be very surprised if his Oncologist will write another script for him on Monday. The new federal
laws on narcotics are making drs very wary about writing scripts and since Jim is not doing chemo this Oncologist
really has no reason to see him at all. Even his Gastroenterologist can't write him that type of prescription...
only an Oncologist can. And his GP can't write it either. I've even had to explain this to some nurses I've talked
to as they don't know what each dr is allowed to do. I don't know if any of you has ever seen the old movie Drs in Love
where they refer to patients as Gomers and Gophers. Jim is a GOMER (get out of my ER) and a GOFER (get off my floor),
he is at the stage where these doctors just want him to go away cause there is not a damn thing they can do for him.
A Petscan isn't going to change anything at all-is it really worth paying $200 for a blurry picture
that it seems none of these radiologists can read.
Well the good news is I got his CA-19 from the Oncologists office after many phone calls and it
laughingly said 128. So now I have 2 erroneous scores we can take to my favorite malpractice attorneys
and I'm sure they won't mind him laying on their couch...I wonder if I can get them to come here.
Wed. & Thurs. 3/28 - 3/29/18 - Jim finally let me call Hospice
I was able to get the Vitas rep to show up at 5:30 pm Wednesday within 2 hours after he said yes as I didn't want him to change his mind
overnight. The medications arrived at noon on Thursday and the nurse an hour later. We were so surprised how fast they showed up
and got the oxygen and medications to us.
He was so glad they came and found out his meds won't cost him a thing so he is very happy. He actually likes
his new nurse Lola which will come weekly and she was genuinely interested in his natural remedies.
No more going to see drs which means less stress and he can still keep on taking all his natural supplements if he wants to.
You are even allowed to drive even if you are on hospice - they do not limit what you can do.
All his equipment is completely paid for - no more worrying about copays at all.
He doesn't need scans to tell if he is getting better - you can tell if you are getting better if you feel better - if
you don't feel better and you are in more pain you are not getting better - it is not rocket science at this point.
The nurse Wednesday that got the ball rolling already ordered his meds
and oxygen to be delivered - Hallelujah. He will actually feel better because he will get all the meds he needs and
oxygen which he feels will help him to fight cancer so he is quite happy about that too. He is finally going
to get some attention and doesn't have to go beg for pain meds. Even with the patch and tablets he is still in pain
so at least this way the nurses can tell him what he can take and when instead of us guessing. He is afraid to take
the tablets sooner than every 6 hours even though the dr told him he could. He is also afraid to use 2 patches even
though she said he could. They started him off on the minimum dose to see how he reacts then they increase it
if the patient still has pain. He really needs a nurse to tell him what to do instead of arguing with me.
The funny thing is he didn't know how to pronounce the 1st ladies name that visited on Wednesday and called her Shamu
- we got a laugh outta that...
am glad she didn't take offense - afterall he is on morphine so that's his excuse.
Jims sister has been having preventive radiation done for 6 weeks - 5 days a week and she has had the flu
so she has not felt well enough to come visit. I was so glad she made it by to see the nurse on Thursday
and hear what she and the social worker had to say. She wore a mask because she still had a bit of a cold and also brought
Jims favorite dish she makes called mishmosh - he ate 1/4 of it after she left and the rest the next day.
It was very interesting listening to the social worker, quite an educational experience I will write more about later.
My mom will be coming over to visit for Easter Sunday - I told my sisters that once a month is probably the best I can do
at this point and am going to try to make it over to my moms next weekend. I need someone to stay here from 10 am to
3 pm while I'm gone and Jims sister says she can as long as it's on a Saturday so we shall see if she feels better by then.
Jim doesn't want anyone here but he will tolerate his sister. Maybe after he gets used to nurses visiting he will be more
open to other people here.
Friday 3/30/18 - That oxygen really seems to be helping
Jims feet are no longer turning purple and he seems to be sleeping better - less restlessness.
On his last bloodwork his carbon dioxide level was too high so I knew he needed oxygen but his dr never said a word
about it. I had even asked for oxygen over a year ago and the dr said he didn't need it...I just can't remember which dr I asked.
I had even looked up prices for the machines new and found out the copay was $500 and had to be ordered by the dr.
So I looked for a used one on craigslist and they still cost $500 so we gave up on the idea.
The equipment places can't sell them to you unless you have a drs order and they don't sell used ones either.
From what Jim has read oxygen kills cancer so he wears it all the time and started taking the Graviola supplement
he had quit taking a while back. The nurse told him a friend of hers ate Guayanaba and got over cancer
and that is the same thing as Sour Sop and Graviola. Jim still had capsules he had gotten on amazon. He also still takes
the Bitter Melon to help lower his glucose because he read that sugar feeds cancer. He still takes his multivitamin,
Vitamin D and C, magnesium malate and baking soda in his water.
So he is still trying to kill the cancer or at least slow it down.
On another note the social worker said my mom could qualify for Hospice because she isn't really doing anything
to change her condition. She only has one kidney that is not doing very
well and congestive heart problems and falls. She said they do not take peoples driving privileges away and
they don't have to be housebound to qualify for care. So this is completely different from housebound care
that is paid for thru insurance.
My mother is not housebound so she can't get that type of home nursing care thru her insurance.
If she was on hospice she could get a nurse to visit at least once
a week to check on her and get all her meds delivered to her home and equipment for free.
And a dr comes to visit you at home once a month.
This seems a whole lot better than what you get with insurance which is drs that you go out of your way to
see and they really can't do anything except bloodwork for her at this point. They can't fix her kidney problem, or
knee problem or her heart problem. She can't get a visiting nurse because she's not
housebound. She keeps a DNR in her purse. Those visiting companions start at $15 an hour even on craigslist
and are not covered by insurance.
So from where I'm sitting Hospice sounds
like a lot better deal. And if she falls and breaks a hip it is covered as an injury related to her present condition.
Of course talking her into it would be really tough because she has preconceived notions about what it used to be like
when she was a nurse over 20 years ago. I've read about people living 2 years under hospice care.
If you don't qualify anymore they just switch you back to your old insurance.
On a more morbid note the social worker encouraged me to choose which funeral home was going to do Jims cremation
and she gave me a list. Jim wants to be cremated and have his ashes in a box right next to the couch w.his favorite
cat statue on top. We talked about this many years ago and already picked out the box. I also already chose which
funeral home - just hadn't paid for it yet. So today I filled out all the paperwork so they can email me a contract
to sign and send back w.a credit card. Will be nice to get that out of the way as I can't imagine dealing with it later.
I had already paid for my own cremation over 10 years ago so as not to be a burden to my sisters. So I
was already familiar with the prices and paperwork. My mother says men tend to put things like this off as they don't
think about their own mortality or how stressful it is for those left behind.
Another interesting thing I learned is that you never call 911 - if there is an emergency you call hospice
and they send someone right away and if they feel it is neccessary they will call 911.
If you call 911 and someone is laying in bed dead the police make you stand outside
your own house while they investigate the scene and then they interrogate you. If the person is on hospice
you just call hospice and they quietly show up and take care of everything for you. No 3 ring circus.
After all you have a DNR on the wall and on file with them and they are in charge so there is no reason to call 911.
They will also provide 24 hour nursing care when the patient gets close to that stage so they are usually there
already anyways - that way the caregiver can get some much needed sleep. Gee and I thought I was going to be totally
alone and wake up one morning and Jim would not wake up. That is the way I want to go - just like his stepmother,
no nurses hovering over me - I just go to sleep and don't wake up.
Monday 4/2/18 - Double Patch is working great
Just started Jim on 2 - 25 mcg patches on Saturday evening and he was able to go 16 hours in between taking
his tablets, so this mean increasing his patch dosage is working. Will tell the nurse on Thursday.
The goal is for him to not have to take the tablets so she may say after a week to add another patch.
Since he isn't taking the tablets as much he says he doesn't have nauseau. He's eating well, hasn't lost his appetite
like he did when he was in pain before. He is still too weak to go anywhere but that's ok - the only
place he wants to go is Debbies health food store and he can order all that stuff on amazon. He just wants
to take his silver vette out and put some non-ethanol gas in it and run it a little. He keeps saying he is going to
do that but another day goes by and he is too tired to do anything. Fine by me cause I've got a lot of catching
up to do on my online work right now.
Friday 4/6/18 - Nurse says keep things the same
Even though Jim has had some breakthru pain she says keep using the 2 - 25 mcg patches for now because
the pain isn't happening that often so Jim only needs to take tablets twice within a 24 hour period. She
did agree that if he gets more pain - adding another patch per 72 hour period is what we will do next.
She also said you don't have to wait the whole 72 hours and told Jim that we could put the new patches on
sooner if he felt like the pain relief from the patch was diminishing at the end of the 72 hours.
So today is Patch Day - is supposed to be put on at 9 pm so will see how he feels this afternoon.
I had read that some people actually change them every 48 hours and that it takes 18 hours for it to reach full effectiveness
after you put it on.
I keep track of when he has breakthru pain and needs to take a tablet. Seems to be around 2-3 in the afternoon
when he wakes up and then about 6 hours later. He sleeps till 4-5 if something wakes him up before 2-3 like
the nurse coming by at 1 pm.
He rallied for about an hour yesterday to start his silver vette-pull it out of the garage and had me put
air in the tires...but his favorite thrift shop in Orange City closes at 4 pm so he is going to try
again today to drive there and to put ethanol gas in it. We shall see.
He was awake at 6 am again today and I told him
that I have got to sleep till 7 am - so he actually made his own oatmeal and fed 2 of the cats this morning.
So he can do things himself if I just lay there but he can't just sit in the kitchen and keep an eye on his oatmeal...
he walks back and forth to the bedroom and ate the rest of the carrot cake left over from Sunday while waiting for it.
Glad I made it without frosting so he would eat it. He now wants me to find a low sugar low carb carrot cake mix - LOL.
He also ate lots of waffles (without syrup)
and bacon that Ed made while he was visiting. Ed put the new fuel pump on the generator and replaced the handle on the RV door.
I am still trying to get motivated to seal the roof on it.
My mother is set on staying in her trailer in Daytona so after talking to a couple ladies taking
care of their own mothers on agingcare.com who said they wished they had not done it.
I have come to the conclusion that she will make my life miserable
if she stays here - because she wants to stay in her own place. You can't make them happy - all you can do is take
care of them.
So I will let her burn thru her insurance for the 100 days of coverage and then her medicare that
kicks in for 100 day after that - she can stay in an alf or nursing home or figure out how to stay in her own home with
that coverage - Good Luck with that idea - I will let her find out the hard way how it works.
She refuses to consider hospice which would be much more helpful to her.
The RV is for after she is no longer covered by anything and needs to live with me if she makes it that long
and refuses to stay in the house with me by then. It is sort of a backup plan in case we lose power during a hurricane too
I can use the generator in it.
Sunday 4/8/18 - Red Legs or Purple Feet
Sometimes Jims legs are red from just above the kneecaps down to his feet and sometimes his feet are purple
so when they are red I tell him to lay off the oxygen and then his legs turn white again and his feet look
purple and veiny...when he walks around the veins on his legs are quite noticeable and the ones
on his feet look quite purple thru his translucent white skin.
So it's hard to tell if he is getting too much oxygen or is not expelling enough of his carbon dioxide.
He only has the machine set on 1.5 so that is not very high.
He is also complaining of pain every afternoon around 2 when he gets up and needs to take a pain pill and then again
6 hours later. So I will call the nurse on Monday and ask if he can add another 25 mcg patch to his usual 50 mcg patch
that has to changed Monday evening.
He doesn't like taking the pain pills cause they make him feel nauseas even with a nausea pill. His appetite today
wasn't very good - he had beef stew as I made a crock pot overnight and so am going to see if I can get him
to eat some of the mishmosh his sister brought over Saturday.
Usually by 6 he is done eating and will only drink a protein shake cause the pain meds kill his appetite.
It is apparent he is not getting better because the pain is just gradually getting worse and so he needs
more of something to handle the pain. It's a balancing act figuring out what works.
He did finally agree to the cremation place suggested by hospice so that paperwork is now done and paid for -
one less thing to stress over - glad to get that overwith... I would of been a wreck if I had to deal with
that paperwork afterwards so I highly recommend getting a prepaid plan like I had already done for myself.
My mother already did it for herself ages ago (I actually have to fly her out
to Oklahoma to be buried next to her parents). I have yet to convince my friend Ed to get around to it
as he can't decide between cremation or burial so I sent him the price list. For some reason men think if
they prepay it means they are gonna die - well me and mom prepaid over 10 years ago and we are still here.
They even have payment plans for as little as $30 a month...very affordable. I have had grieving friends
get gouged when things weren't prepaid and had to pitch in to help them out so if you are putting things off
just remember you will be stressing out the people that care about you the most. Don't make them go begging
for help to pay for something you should of paid for yourself.
I did get over to my moms Saturday while Jims sister stayed here and was glad I did cause it took me all of
4 hours to do the cleaning and laundry. I didn't really have the time to get her groceries but she had gotten herself enough
to last awhile. I decided to order her more cleaning supplies and bed risers online so
they will be there next time I visit.
My sister in SC told me to raise the bed up cause she complained to her of having trouble standing up
to get out of bed sometimes.
I also told my FL sister that visits once a month to bring her a few things next time she comes down in a week or two.
My brother is still as useless as ever - he never visits her or talks to his sisters anymore...mostly because he knows
we have nothing nice to say to him. I have tried emailing him to bring stuff to mom but never get a reply.
Boys will be boys - I am sure Jim would never go out of his way to bring his sister food if she were sick in bed...
he doesn't really appreciate all she has done for him over the years... he just takes it for granted that's what sisters do.
Umm...no Jim...you are just real lucky to have a sister that will go out of her way to help us.
We are both very truly blessed to have such great next door neighbors too as they brought Jim a walker and a few other things
he may need later on down the road.
Thursday 4/12/18 - Nurse Visit
Even though on Monday and then again this afternoon I started Jim on 75 mcg of patches he still had a pain level of
8 tonight even after taking his pain pill. He says the pain fluctuates from 4 to 8 off and on.
The nurse said we could put the patches on sooner than every 72 hours so may have to do that next time
as they seem to wear off on the afternoon of the 3rd day. He also had the shakes yesterday but she said that was
from the morphine withdrawals...since he takes less tablets per day now. She said if he gets breakthru pain
to take them but he would rather not and just lays very still waiting for the pain to go away. It isn't until
the day after I put new patches on that he seems to wake up feeling better. I can see that by next week
will probably have to start changing patches every 48 hours. The nurse also ordered a respiratory specialist to visit
to talk to him about his oxygen usage and she may showup Friday. A nurses aide called to see if he needed help
with anything but he doesn't yet. At least he finally got to drive his silver vette to put gas in it Tuesday
and bought a bunch of books about the civil war - a nice old time/life collection he found and more Clive Cussler books
one of his favorite authors. He talks more now about what he is leaving to which niece or nephew and I let him
ramble on. I have told his sister that since he is very medicated you can't really do anything but listen... as he gets
upset if you don't agree with him but she still hasn't figured that out yet - you don't argue with a person that is
that heavily medicated.
My mother has told me that over and over again and I have to keep reminding myself to just sit and listen and nod my head.
Thank you zoloft.
Sunday 4/15/18 - Pain up to 10 Yesterday
Jim had just taken his pain pill that is supposed to last 6 hours at 2:15 and by 5 pm his pain had gone up to 10.
He did his coffee enema but that did not releive the pain, he said it was the worst pain he has ever had.
So I told him take another pain pill and called Vitas. I expected it to take awhile for a nurse to get here but she
called 2 hours later to say she was all the way in Daytona and asked how his pain was, it was down to 8 by then.
When she finally arrived 30 minutes later he was at about 7. She had me take the emergency pak out of the fridge
then called her boss. They said not to give it to him because he had just taken a pill at 5 pm and his pain level
was going down. I asked if I could put another patch on him even though he wasn't due for one until the next evening and
she said no. She said that tomorrow I could put on my usual 75 mcg patch but that she would tell his nurse he needed
100 mcg patch now because the 75 was just not lasting long enough. She also said he may have to be put on methadone
(as it lasts longer) after that stronger patch quits working. She said they are trying to get his pain down to 3-4 as it is unreasonable
for it always to be in the 6-7 range. He didn't eat all afternoon because of the pain but after she left he managed
to get a bowl of beef stew and a little bread down and some carrot cake later. He woke up in pain again this morning
at 7:30 am and took another pain pill, had his oatmeal and protein shake and went back to sleep. It seems the patches
just do not last more than 2 days. I asked the nurse if we could give him another patch at the end of 2 days but she
said no - they
could only give them as prescribed every 72 hours. The day after I put his patches on he wakes up with no pain
and eats well and feels well enough to do things around the house or work on his car but by the afternoon he is having
to take a pain pill again. As some of you may know my reason for writing this is so that other caregivers of people
with pancreatic cancer can get an idea of what to expect when someone reaches stage 4 or the hospice stage.
I wasn't able to find anything in detail online about what to expect so now you'all have something to read.
I'm not a hospice nurse and even when we ask them questions they only give general answers. This particular weekend
nurse had to drive over 50 miles in every direction to see patients so was very busy so don't expect much
help on weekends. I sure hope if I need help on a weekday they come quicker. At least now I know what the
emergency kit is for but she said it was no different them him taking a pill before the 6 hours was up. He now has
nurse permission to take an extra pill if the pain gets real bad - not just me telling him to. I asked her about medical
marijuana and she does have some patients on it and says it really helps with nauseau, pain and relieving agitation but
Jim refuses to ask for it. It comes in pill and oil form and does not get you high just relieves cancer symptoms.
I expect when Jim wakes up he will be in pain again and probably won't eat much, at least I can put his new patches on
Jim woke back up at 1:00 am and took another pain pill then after I asked him if he wanted his stew he said no he wanted
a Whopper. So I called Ron and took a chance on seeing if he could get that for him and I was very happy they were just
on the way home from Cocoa and stopped to get 2!!! and brought it right here. Jim had fallen back to sleep so was very
surprised when Ron and Bryna walked in with 2 Whoppers - he woke up right away then
and gobbled them down. It was like he woke up and these angels had come and answered his prayer.
He hasn't seen our neighbors in a long time as he rarely goes outside and when he does he
just doesn't feel like socializing. If I had asked him first he would of said no but after a pleasant conversation
he fell right back to sleep. I am glad they got to see him that way - not in pain and happily eating Whoppers.
He is such a health
food nut I couldn't believe he would eat something like that after years of refusing to eat fast food.
He woke back up at 4 pm and took another pain pill and watched golf a little.
I will be putting his new 75 mcg patch on this evening around 6 pm
after he has had his coffee enema - so tomorrow he should be feeling better as it takes 18 hours for them to take effect.
What a day - 3 pain pills today - this is a sure sign that things are not getting better and pain is getting worse
much faster than I expected.
Will be calling Vitas Monday to ask about upping his patch to 100 mcg on Wednesday evening which will be his next patch day.
Monday 4/16/18 - Called Vitas - Jims Regular Nurse Lola showed up at 8 am
Luckily Lola lives nearby and we were her first visit for the day. She rushed over and I told her about Jim
needing 4 pain pills yesterday and how even though I had just put a new patch on him last night
he woke up in pain. She told me to switch him over to the liquid kind as it was stronger.
He had just taken a pain pill at 7:30 am and so 2 hours later she gave him the liquid and he is still resting so it is working
now even at noon.
He is now on 20 mg liquid morphine every 2 hours or as needed-meaning he shouldn't need it more than every 2 hours.
He didn't get much rest last night and finally went to
sleep after she left. He had noticed that his stomach was bloated and hard last night and Jim was concerned that it might
be ascites...I looked online and from the pictures I saw - it sure looked like it. So the nurse today reaffirmed
what we thought and said yes it was the beginning of ascites. That is a buildup of fluid in the peritonial cavity...
usually with pancreatic cancer when ascites starts it means the cancer is in that fluid.
She told us that his choice was
to go to the hospital to have them put a drain in, which means he would no longer be under hospice care.
The other choice was to stay home and start on Lasix which is a diuretic to help relieve the fluid buildup.
She said that as the fluid
builds up it would make him very uncomfortable and he would need more pain medication. She told him to take the
liquid from now on. She also said that a CNA or RN could be here 24 hours when we felt it was needed.
She would not tell him how much time he has left...
but I read online that if the ascites is drained on pancreatic cancer patients they may live up to
2 more months from the onset of ascites.
Since at this time he has chosen not to have it drained there is no way to tell how much longer he has.
Wanting to make more room for when they need to have him on an IV morphine drip last night I cleared
out one of the tables in his room. It was also to make room for the recliner so I can sit in there more
and put most of his non-prescription vitamin supplements in a box under the other table.
Now if I can just get him to watch something besides Fox news.
He must of really felt bad last night when I went to sleep at midnight because he had turned the tv volume off
but it is back on this morning.
I'm so glad he is finally able to rest as he was not able to sleep all night, either because of the pain level of 6/7 or
worrying about the ascites. He does take a lorazepam (ativan) before going to bed which helps with anxiety but
it didn't help much last night. After he was well asleep I spent all morning cleaning as it helps me keep my mind off things.
Went to CVS to pickup his beginning doses of lasix and potassium, then tomorrow it will start being delivered.
Jim woke up at 4 pm in pain of 6/7 - didn't want to eat, chose to do a coffee enema instead.
Gave him 20 mg liq.morph. It had been 6 hours so what he had this morning seemed to last a long time.
So now he is on 100 mg Fentanyl patch every 3 days and 20 mg liq.morph. every 6 hours. Took his Lasix
and Potassium at noon. I'm sure the time between each dose will get shorter - we shall see.
I am now camped out in his bedroom at the desk and have my noise reduction headphones that I used to
wear on airplanes to keep his TV noise out.
Tuesday 4/17/18 - Up all night - 7 am- texted Jims Regular Nurse Lola this am
I was up all night trying to get Jims pain under control,
he hasn't eaten since yesterday morning - won't eat...
his ascites is getting worse and he is now agitated and
I couldn't get him to calm down so I had to call the nurse.
He refuses to take his Lorazepam for agitation and was up and down all night and complaining about pain.
I tried at 4 am to get him to take more medication and he refused saying he was full...he was delirious
obviously because he thought his body was too full to have any more medication. Finally got him to take his 20 gm LM at 7 AM
but he said it was not working as he was still in pain and this stuff is supposed to work fast.
Lola had told us yesterday morning he had to choose 24/7 care to get his pain under control
so that is what I did this morning and she reaffirmed it after she got here with him.
So Lola showed up at 8:30 and sat and did her paperwork to take to the office to setup what is called
"Constant Care". I tried to explain to Jim that it takes time to schedule nurses to do that.
At 9am before she left I gave him his 20 mg LM. She told me that when there are CNA's here they just
tell me to give it to him as they cannot. I hope he will do it when they tell him to as he refuses
to take his Lasix now also.
He was telling me to charge up his jeeps battery while the nurse was here (as he is giving it to his nephew)
and insisting I call his Niece to show up. He was sort of getting up and down and pacing and telling me to do things
so I got out a notepad on clipboard and wrote things down so he would feel like I was following his instructions.
At least by 11 am I was able to get him to have a 1/4 protein shake and a bowl of oatmeal finally.
He insisted on taking his vitamins which I had put away as I was afraid it would upset his empty stomach - I told him
he had to eat something beforehand so he finally agreed to eat his oatmeal.
I told his sister what was going on and she will come this afternoon and is going to try to get her daughter
to show up tomorrow afternoon. Jim is so out of it he thinks people should just drop everything and show up - he forgets
she is in school all morning and has kids that need a sitter. He also forgets his sister still has to get
radiation treatments every morning.
I am so tired - not enough sleep - I never realized how hard it was going to be to get him to take his medicine.
I think they may setup an iv drip for him soon so he can have
constant pain medication.
1 pm - more M and Jim finally took his Lasix and Potassium after drinking a protein shake.
1:30 and an M tablet as we are running out of LM. Lola ordered it but not sure when it will get here.
Jim is finally resting so now I can have my lunch (leftover pizza and beer - yum)
Still waiting for his sister to show up with Mishmosh so I can go pickup my Drivethru order from Walmart.
Nurse texted me that the Dr ordered Methadone which will get here tomorrow. He even said I could change his patch
after 2 days so I'm gonna do that tonight.
While Jims sister was here I went to pickup my Walmart order and while I was gone the respiratory therapist came by
which was nice as she got Jim out of bed and got him to sit in the lazyboy for the first time. She said his respiration
drops from 94 to 83 when he gets up and sits. So she turned up his oxygen and explained how everything works...so glad she
showed up...a day late but that's ok.
After unloading the groceries and putting them away I quickly made some of Jims favorite biscuits in the hopes he would eat
and gave it to him after the Resp. Therapist left. He ate 2 with the Mishmosh then got tired.
Next we got a surprise visit from Dr.B who from the sound of it thought Jim was really in bad shape but by
3 pm he was in no more pain - which I was surprised by. He also told Jim his ascites was not that bad - actually it
had shrank since last night. He just wanted to go back to sleep so it made it look like I
had panicked for nothing - yeah right - no one knows what it was like dealing with someone that is in pain and won't
take their medication and is yelling at them at 6 am after having very little sleep. 4 pm Got him to take another M tablet and he went to sleep I just don't want to wait for the pain to come back
and then have to try to chase it away since these tablets are not as strong as the liquid.
4:15 pm we got a "Constant Care" nurse to relieve me and I was so glad she showed up as I am worn out and needed to eat.
After I went over what happened with her I finally got to sit down and have some of his sisters Mishmosh.
Took advantage of the time he was sleeping to take a shower, do laundry, water plants.
Thursday 4/19/18 - Round the Clock Care
Jims sister came by yesterday afternoon with her daughter and her 2 kids to visit. He gave her the family ring
and told her the history of it and she wrote it down. He was quite alert but started getting restless and pacing
around looking for keys so they told me it was time to give him more Lorazepam. His Methadone showed up yesterday
and they started him on that as soon as it got delivered. So this is the 2nd day on it and since it is a longer lasting
pain medicine he only has to have it every 8 hours with liquid morphine in between. They were a little concerned
because he had only gone to the bathroom once in 8 hours but luckily right before the nurse
left he got up and finally did. They were worried he would need a catheter or was having kidney failure.
Usually after you give people Lasix they need to go right away but it seemed to not affect him at all.
The nurses kept telling me to stay on top of giving him Lorazepam on time or he would get what is called
terminal restlessness and be hard to control. I am going to have to read up more on what that means as I feel
sort of bad about him being so sedated all the time. His sister may visit again this afternoon.
I have orders to give him his next Methadone at noon and Lorazepam at 1 pm before she gets here.
Family visiting can be very stressful as yesterday he was looking for keys to a closet that he has
his mothers vase in that he wants to give to his Niece. He just doesn't trust that it will go to her even
though it is in writing. He is worried that his sister will not give it to her daughter. I don't understand
these worries but it is a cause of agitation for him so as soon as she shows up he will
wake up and get agitated again and start looking for keys. Wish I could find those damn keys to that closet.
He hides things then can't remember where he put them. He even instructed me on how to remove the hinge pins
if I couldn't find the keys - so this is a major source of frustration for him.
He went back to sleep after eating his Sheperds Pie and Biscuits and then carrot cake later.
The nurse even got him to get up and take a shower and shave. His sister didn't show up today even though
I heard her say yesterday she would see him today. I still haven't found those keys but really haven't put much effort
towards looking. The hospice nurse left at 4pm so now I am on my own.
He is now on Methadone and Lorazepam every 8 hours, Lasix and Potassium once a day and Liq.M as needed.
One nurse also said if they offered me a hospital bed to take it because it would be easier
for them to take care of him when he can no longer get out of bed on his own...that is if he makes it to that point.
So now I am camped out in the bedroom again at the desk so I can keep an eye on him-just like they did.
Friday 4/20/18 - Not Eating, Hardly Drinking AnythingWarning Graphic Language
9:30 pm last night - had a fun time getting Jim to do his first warm water enema,
which actually worked quite well but got kind of messy
when we tried to do the coffee the 2nd time. He kept saying he couldn't remember how to do it as he was really out of it.
So had to get him to stand in the shower and clean off but he felt better afterward. Gave him his meds and put him
back to bed. I already have a plastic mattress protector and added another plastic/cloth pad under him.
Luckily no bed accidents yet probably because the meds are constipating him.
7am - had to wake him up for his 2 Meds which were actually 2 hours overdue, he hardly had any water so I was not surprised
he did not want to get up to go to the bathroom this morning.
He then slept 5 hours then I woke him up at 12:30 pm because I needed to give him Lasix. Was able to get him
to drink a little protein shake and water with it. He finally got up to go to the bathroom alot but was very unsteady
so it's time for the potty chair. His urine was orange so I know he is not hydrated enough.
Will see if he will use the potty chair next time I have to wake him up at 3pm for his meds.
He seems to be somewhere else as his eyes look like they are looking past me.
His breathing has changed from steady shallow breathing
to 2 deep breaths in a row then a 30 second pause all day so far.
Am going to try to get him to drink his Smooth Move tea to get things moving. Just getting him to take 2 pills is tough
as it is as he barely sips the water. I turned Fox News off this morning and have some tranquil instrumental music on my
laptop intead. Luckily he didn't even notice the volume was turned down but he can still see the picture.
I kept the camera and audio on him while I was working around the house as I expect more of his family
tomorrow. His nephew has to work all week so may come by to see him this weekend.
3 pm: Finally got him to wake up to get his meds and some water and he asked for carrot cake so I was very happy
he wanted something to eat because he refused any breakfast or anything - this is the first time
he has skipped his oatmeal. He sat there and let me feed him carrot cake,
he tried to do it himself but just held the cake up to his
mouth and sort of stopped. While I was feeding him he held his hand up like he was feeding himself.
Then he wanted to get up and go for a walk and said "anything to pass the time"
and said he was looking for an hourglass and said he had only 1 hour...
first he tried to walk into the utility room and was going to go out that door into the garage so
I had to turn him around and walk him into the kitchen. Then he opened the cupboards and tried to put
2 small glasses together as if he was making an hourglass. I told him I would go find an hourglass.
He is hallucinating I am sure or half here and half there.
After standing in the kitchen awhile looking at one of the glasses perplexed and sort of nodding off
I got him to go back to bed. It was obvious the lorazepam was wearing off as it had been 8 hours since he took it.
This is all tearing my heart out of course.
This is all part of terminal restlessness and if he was not on lorazepam the nurses said he would take off and
try to drive or take off walking down the street in his underwear or something.
When they were here he would get out of bed real quick unexpectedly and they had to follow him around to make sure
he didn't fall. 3 of them told me he had terminal restlessness which is what had caused him to get so paranoid and
mean spirited before they got him on the lorazepam. I had been trying for a long time to get him to take it more than
just at night but was unable to until they got here. They told me do not forget to give him that every 8 hours or
I would end up having to call them back right away. I asked him if he has any pain and he doesn't so the methadone
must be working too.
Weird thing is I got a phone call while taking care of Jim from a psychic lady in Jupiter referred by one of my psychic
website customers that wanted me to create a site for her. Her husband just passed away a month ago.
Gee maybe she can help me communicate with Jim later on down the road. Just kidding.
But let me tell you some of these nurses that are from other countries are true believers in the afterlife
and haitian/french & new orleans voodoo.
They certainly had some interesting stories to tell - very entertaining.
Saturday 4/21/18 - Finally Hungry Today
Last night I started trying to get Jim up at 9 pm because I needed to give him his meds at 11pm.
I played some Beegees hoping it would get him up and moving as he did not want to get out of bed.
It took me an hour to get him out of bed to go to the bathroom - he is able to pee but that is it even after
getting him to sit on the toilet for 30 minutes - he just falls asleep. An enema is not going to happen even though
I was able to get him to drink the smooth move tea yesterday.
He can barely walk as he takes little tiny steps and it seems like he can't see
but at least when I finally got him back in the bed he laid on his side which said I needed to
have him do since he is not supposed to just lay on his back all the time.
Mom said since he never ate anything yesterday then there is nothing there.
Today I gave him his Meds at 8 am and switched him back onto his back. Had to wake him again at noon
for his Lasix and Potassium. He halfway woke up wanting his protein shake and drank a whole one with me
holding the cup and straw for him, he would not sit up.
When I say woke up - his eyes are droopy and he is only half cognisant. The Dr told us the Methadone
only kills pain but does not cause hallucinations but the Fentanyl patch might. The important
thing is that he is no pain. After his shake he decided to
get out of bed and finally peed again but refused to sit down even though I put the portopotty over
the commode so he could use the arms on it to lower himself which was very difficult for him to do.
So with lots of assistance and me prodding him on to take another little step he finally made it back
to the bed. He is very weak and can hardly walk so I'm going to see if I can get him to use the walker.
He is pretty out of it so not sure if it would just confuse him trying to get him to use it.
He refuses to use the portopotty anywhere closer - he wants to walk to the bathroom although he can hardly walk.
While he was standing there in a daze trying to figure out what to do..
I asked if he wanted anything to eat and he said a Whopper so I texted Ron to see if he could bring one.
I also heated up the Sheperds pie and made some biscuits just in case he didn't want the Whopper.
He is sleeping now and we shall see if he can eat.
Ron came in with the Whopper and I set him up in the bed and gave him little bites of the meat only...
so he is still able to eat if hand fed little bites. Ron hasn't seen him since last Sunday the 15th
and he remarked how he has gone downhill alot since then. I said yeah, he can hardly walk now
and is not all there.
He ate all the meat and a few pickles. Then I asked him if
he wanted a Flaky Biscuit and he ate one of those in little bites so glad I went ahead and made them. So
now we have an extra Whopper and more biscuits for next time if he gets a craving for one.
So will let him sleep and give him his Meds at 4 pm and put on a new Patch at 7 pm.
His sister couldn't make it today because she is having a garage sale - she will be here at noon tomorrow as I need to have
her watch him in mid-afternoon so I can get a walmart pickup order.
I put in an order to hospice just now for adult protection underwear, disposable wash cloths, miralax and disposable bed pads
since Jim can no longer do enemas he is going to have to drink lots of
Miralax and I will pray he makes it
to the toilet on time even though he can barely walk. I may order another toilet for the beside too-getting him to use it
is the tough part. At least he is willing to use a urinal. I think I can make it thru a week with him before he needs
Constant Care again and a hospital bed setup as I am having a hard time getting him to move from laying on his side
to sitting up. Getting him out of this bed so they can switch beds is gonna be tough
- will put him in the lazyboy next to the bed if I can't get him into the other room till it's done.
At least in this condition he can't fight me on it. I am not looking forward to having nurses 24/7 but
I can see where this road is going from this point on.
Sunday 4/22/18 - Jims Sister Visits
I had scheduled a walmart pickup for noon so Jims sister showed up at 11 am which gave me enough time to
mow the lawn before it rained. She was upset to hear that his condition had deteriorated to the point
where he could no longer walk to the bathroom anymore or feed himself.
She watched him while he slept while I went to walmart then after putting groceries away I reheated the
2nd Whopper and fed him that and some of his protein shake. He then needed to pee so I was ready right
away this time with his urinal and had no accidents. I had him stand up so I could put on his new adult diaper
w.tabs which made it easier to
put on and adjust and I was happy he did not fight me over it.
He didn't want to sit on the portopotty or in the lazyboy - he just wanted to
lay back down so his sister lifted his legs and helped me pull him up further onto the bed and he has been sleeping since.
She feels he is overmedicated as she had just seen him Tuesday 4/17/18 - 6 days ago when the Dr visited to explain
about Methadone which was right before the Constant Care hospice team arrived.
She left at 3 pm today. We discussed slowly reducing the Fentanyl Patch back down to 75 so I said I would Not replace it
on Monday as planned and wait the full 3 days and replace it with a 75 on Tuesday. Will see how his
pain is on Monday night and Tuesday first. She even called Vitas today to tell them she felt he was overmedicated
as he has gone downhill so quickly. I just
thought this was part of the dying process since I have no experience with this and was just following instructions.
I will call Vitas on
Monday to ask a nurse to come and evaluate him if they don't call me first because of her phone call.
He seems quite contently sleeping and snoring away at this time
after having his carrot cake at 6 pm.
Earlier today I texted Jims nurse Lola to order incontinence bed pads called Chucks,
adult protection underwear, miralax and Chocolate Ensure which
she will bring on Thursday. I already got all those things myself at walmart on this trip.
After the conversation with his sister I just don't feel qualified to deal with this type of situation anymore and
so I may have hospice bring over a hospital bed and restart "Constant Care" this coming weekend.
I know he wanted to die at home but I just feel I lack the experience to deal with it by myself.
Jims sister has in her mind how long things are supposed to take so maybe she would be more comfortable having him
in a facility. I just don't have any experience dealing with impacted stools or diarrhea in bed so
when he starts complaining about things I will call her to ask her what to do or ask her to come over and help.
Family members can be so helpful at times like these.
Jim is not in any pain which was the goal when hospice started working on him but it's hard to find
a balance between having no more pain and being awake and alert.
Glad it rained today as the lake needs it and there are a pair of ducks happily splashing around in the water
that I can see from where I sit in the bedroom next to the window.
Monday 4/23/18 - Rough Night - Had to Call Vitas
I was supposed to give Jim his medication at 1 am but I fell asleep at midnight and he woke up
so I asked if he was hungry...big mistake...I should of given him his meds first.
He ate a sandwich his sister had brought and then his leftover hamburger and a biscuit but
then he wouldn't take his meds. He spit out the pills. He refused many times and jumped out of bed and
his paranoia started, (I was warned by the nurses they can turn on a dime if
you are late on their meds) he started yelling repeatedly
"call the hospital", "call the doctor" so I called Vitas and told them I needed help
as he was experiencing terminal agitation.
He went into the closet and put his pants on and was running around looking for socks.
I then called his sister at 2 am and told her I needed help cause he was scaring me. She rushed over
and tried to get him to settle down which did not work. He ran out the door and his sister had to chase him down and walk
around with him outside awhile before she could get him back into the house. He then went all over the house saying
I was lying to him and that he did not pee on the floor and wanted to know where I put the table in the bedroom.
I had to move it out of the way so he could use the walker to get into the bathroom a few days ago - I gave it to Kevin
to use in his room. So now there is more space to walk into the bathroom but he was very upset at the change.
He did not remember anything since Thursday and was rubbing his head alot. Head rubbing is a sign of distress.
When the Vitas rep called me back he told me to turn on the TV's to distract him. He was pacing around
and approached me yelling over and over again "what time is it" then grabbed my arm to see my watch.
Quite scary as he approached me I was afraid he was going to do more than grab my watch. Now I understand
how old people end up killing their spouses and have no memory of it...terminal anxiety.
We tried to explain to him that it was 3 am and that he woke every one up. His sister was able to get him to
sit down in the lazyboy in the livingroom to watch tv. When the nurse finally arrived
he was back in bed, had removed the pad off the bed but still refused to take his meds even for the nurse.
His sister went home and I crawled back into bed and prayed he would go to sleep.
He was moving pillows around because he wanted to see who was behind them.
He finally went to sleep and when I woke up at 6:45 am I was able to
get him to take his meds as he was half asleep. He then woke up and wanted carrot cake and ate 2 big peices
and 1 1/4 of protein shake.
He didn't want his oatmeal at all. He was still experiencing anxiety because he is one dose behind on his meds.
After he was more relaxed I had to put the bed pad back under him as
he was getting rather gassy after all that eating...he was distressed that I was putting it under him
but too tired to stop me. I have put Miralax in his water trying to get things moving.
10 am and he is finally sleeping and I am worn out. I had already told his Thursday nurse she will need to talk
to his sister because she needs to have terminal restlessness explained to her. It is sort of like
paranoid schizophrenia and dementia combined. She wants him to be like he was
but she doesn't understand that in order to relieve his pain and agitation he needs to have these medications.
He will never be like he was and this terminal anxiety condition has been going on way before hospice
got here to control his pain.
Monday 4/23/18 & Tuesday 4/24/18 - Playing Catch Up - Had to Call Vitas Again
Monday afternoon Jim refused to take his meds again at 3 pm so I had to call Vitas again.
Because he missed his dose Sunday night he was now behind and it would take time to get him back on a schedule
and for the meds to get into his system to keep him calm.
He finally took them for the nurse at 4 pm but she said that the third time I call them he will need to have
24/7 Constant Care again to get him under control. That means I will have to allow them to put a
hospital bed in
and they only stay for 4-5 days. After that I would have to move a twin bed in so I can sleep in the same
room to keep an eye on him. For now I am sleeping in our queen bed as I am finally able to turn
the tv down at night so I can sleep. This way when he gets up at 4 am I can make sure
he doesn't fall when getting out of bed. I also can turn down the TV while I'm sitting at my desk working while he sleeps
during the day...so as long as I give him his meds on time the situation is manageable.
She said if he needs Constant Care a 3rd time then they will recommend he go to their facility
in Orange City on Saxon...because it will mean I am unable to manage his care by myself. If I don't put him
in their facility they may drop him and tell us to try another hospice company. If another hospice company
does not want to take over he will end up in a hospital and end up in their hospice facility.
I explained this to his sister when she came by on Tuesday and Wednesday afternoon.
She wants me to reduce his anti anxiety medication but it is an 8 hour time release pill and if I reduce it
then I will not know how long it will last and he could then get to the point where he will refuse to take his meds
like he did Monday at 2 am and 3 pm. This will cause me to have to call Vitas again for the third time.
3 strikes and I have to let them do Constant Care...I said to her -
"do you know what it is like having nurses show up around the clock
for 4 days." It is not relaxing at all and I cannot leave. All the CNA's do is tell me when to give him his meds
and take notes of when he eats, has bodily functions and how he behaves. They do not do enemas but they will
change sheets and clean bathrooms - but I can do those things myself. It is nice to have someone here while I'm cooking
to keep an eye on him in case he wants to get out of bed. I do work outside in the yard a little at a time when I know he's going to be sleeping.
The good news is Tuesday at noon after 2 hours of trying I was finally able to get him to poop since he hadn't in 6 days.
I had to give him a Fleet Enema
3 times while he was on the portopotty over the commode - he didn't like that and stood up and water started coming out
so I had to push him back down on the pot and finally it all came out. It was like a wrestling match.
I left him there for 30 minutes so I could clean the floor...
then got him into the shower for a good scrubbing.
I have been putting Miralax in his water so I am hoping having that regularly will
get him to be able to go without an enema. The problem is he has been doing coffee enemas for so long he has no feeling back
there and no muscles to push things out. I just hope this Miralax doesn't work too well and give him diarhea cause
he now refuses to wear adult protection underwear. I got a super absorbent pad for the bed in case that happens next
and a big office floor mat to put next to the bed to protect the carpet.
Even with a hospital bed here he will have the same problems - it's just that it sits higher so it will make
it easier to turn him and help him sit up.
I did do as his sister suggested and lower his Patch Tuesday night to 75 mcg to see if that will make him more alert
but I am afraid to lower his anti-anxiety medicine as she suggests. If she wants to try doing that she can stay and take care of him
on Saturday so I can visit my mom and she can see how that works out.
If she can't keep him under control - she can then call Vitas for the third time.
At least by the middle of next week she will be all done with her radiation treatments
so will be able to be here more after that if she wants to.
Later Tuesday evening at 7pm his sister and brother-in-law came by with some hamburgers and fries and he woke up and
was very happy to eat something different and one of his favorites.
After they left I changed the Fentanyl Patch on his back at 8 pm.
Will reheat what he didn't eat Wednesday afternoon. His sister and Niece are supposed to be coming by then.
Wednesday 4/25/18 - Relatives May be Visiting
Jim got up at 4 am to pee then wanted 2 big peices of carrot cake and went back to sleep.
7am gave him his meds then he ate oatmeal w.berries, 2 biscuits, carrot cake and some protein shake and went back to sleep.
I was able to wake Jim up again at noon for his Lasix and Potassium but he refused to take that huge potassium pill.
He did drink some powerade so I got him to stay awake to eat the rest of that hamburger. Been giving him Powerade lately
as he likes it better than plain water and it wakes him up a bit.
He got up and walked towards the bathroom and I picked up his bed pad and was shaking it out
when he starting peeing inside the doorway of the bathroom instead of walking into it and going in the commode.
So I ran over to him and got him situated in front of it before he soaked the floor. Then I got him to sit on the stool
for a half hour while I cleaned up the floor. Phew - right when you think he's ok he does things like that.
He also thought he had pooped but had not even though he was quite gassey and his stomach was making gurgling noises.
Good thing I ordered more air freshener.
So got him back into bed and gave him some grapes to eat, he had a few of those and then went back to sleep.
I told him that he had company coming but he just can't stay awake. He's been sleeping like this for a year so
this is nothing new for me. He still thinks he is eating if I give him his pills after food and chews
them sometimes which he is not supposed to do but at least he took them. I always get worried when it gets close to the end
of the 8 hours that he will refuse to take them. It causes me a great deal of anxiety so as soon as it is a half hour
before the 8 hours I start trying to get him to take them. After going thru 2 episodes of him not taking his meds
and going nutso I just can't go thru that again. Basically he is now a drug addict on Fentanyl (morphine) and Methadone
and Ativan (Lorazepam) and so if he misses a dose his system goes haywire. The Dr explained that all this is
needed to keep the pain at bay and I would rather see him without pain even though he is sort of out of it.
Just got a new bottle of liquid Lactulose sent to me from Hospice that I am supposed to give him twice a day
for his severe constipation and I tried to give it to him after lunch but he refused.
Am going to try again when I wake him up when his sister arrives.
Well no one showed up yet and it's almost 5 pm so while he was sleeping I went outside and did some weedwacking.
Well maybe they are going to show up tomorrow when Jims nurse is going to be here after noon.
That's All Folks on "As the Stomach Turns".
Ron showed up on his bicycle and he came in and helped talk Jim into taking his new Lactulose laxative so finally
got that done.
Thursday 4/26/18 - Nurse Day
Jim had a bowl of oatmeal and protein shake after his meds at 7 am.
Ron dropped by and helped me talk him into taking his new laxative called Lactulose again.
It is just an ounce cup but tastes like a very sweet syrup.
Last night I had to add a 25 mcg Patch cause he had some pain after his first dose of Lactulose.
He said his pain level was 6.
So next time I will stick with the 100 mcg patch as lowering it to 75 was not a good idea. It takes 18 hours for
the new patch to get into his bloodstream so it takes till the next day after you put on a patch
to tell if it is the right dosage.
So will wake him up at noon again for his Lasix and see if I can get him to take that huge Potassium pill
because he would not take it yesterday.
If he doesn't I will tell the nurse and he will probably take it for her at 1 pm.
He acknowledges people when they visit but is very sleepy unless it is at the end of an 8 hour med cycle.
He is a little more alert on the last 2 hours of his 8 hour dosages so that is when I try to get him to eat.
So he is most awake 1 hour before his 8 hour cycle ends at 6 am, 2 pm and 10 pm.
Even before he started on the heavier meds 3/19/18 he used to sleep all morning and not wake up until mid afternoon
back when he was on Tramadol.
New Nurse Michele arrived to take over for Lola so they were both here so we could be introduced to his new nurse.
Jim was asleep by then, so the nurses and I and his sister had a meeting in the livingroom.
They said I could try cutting his Lorazepam in half during the day to see how he did on that.
They ordered me 1 mg pills.
So at 3 pm today I only gave him half his dose which will be 1 mg and I'm supposed to give the full dose 6 hours later at
9 pm. Since that whole 2 mg pill was supposed to last 8 hours - I suspect that half of it will wear off
after 4 hours and for him to start going bonkers starting at 7 pm.
Will be interesting to see if I can give him his nitetime dose of 2 mg
at 9 pm or if I will have to call for help. Then I am supposed to give him 1 mg at 5 am so 4 hours later
I am sure he will be flipping out on me by 9 am. I also have to give him his methadone 2 hours after his Lorazepam
so will see if he will even take that. So this means I get to sleep by 11 pm, wake up at 5 am and again at 7 am.
We shall see how this new schedule works out - will be a fun night and day.
May have to call my neighbor Ron to ask for help getting him to take his meds or catch him running down the street.
So if you see Jim wandering around at night and me looking for him
, we can blame the nurses and his sister for cutting back on his meds.
Eye roll, Big Sigh.
He had a good appetite today after the nurses left he ate, grapes, Sheperds pie, 4 biscuits, carrot cake and apple juice.
Well he slept till 9 pm then wanted Biscuits after I woke him up to give him his 2 mg Lorazepam
- Phew made it thru the night.
Will see what tomorrow brings.
Friday 4/27/18 - Visiting Day
So far Jim is ok this morning which is a releif, had his oatmeal and protein shake...
will know more later. His sister and niece are going to
show up at 2pm. His sister wants him to be like he was 4/19/18
when her daughter visited a week ago. But the nurse that was there that day
(it was the last day of 4 days of Constant Care)
said he was
experiencing terminal restlessness and was worried he would refuse to take his meds
so had me give him his meds after we got him safely off the boat and into the house.
Yes he was very active but the nurse said he could turn against us and refuse to take
his meds if we didn't get some in him right away.
They had showed up during the time he was supposed to be given his meds so they were put off past the time he
was supposed to get them.
I didn't really understand what she meant until the Monday after that at 2 am when I was an hour late giving him his meds cause I fell asleep.
Will see how this new dosage schedule works later.
Eventually I hope to get him on a schedule where I can get to sleep earlier and not have to wake up at 5 am.
My next hurdle today will be getting him to take his laxative again this morning.
I could put it in his protein shake but he never drinks the whole thing and he started asking what was in his shake again
so his paranoia is returning a little this morning. If things don't taste the same he won't eat or drink them.
Am waiting for hospice to deliver some Chocolate Ensure in the hopes he will drink it
- they were supposed to bring it yesterday but didn't have chocolate. At least they finally brought the Chucks bed pads
and adult pullups...that saves a whole lotta money. For the past 2 days was able to get Jim to keep on his
I am still putting Miralax in his water but he doesn't really drink enough water.
If he has a bowel movement even once a week without an enema it will be a major accomplishment.
Well I was surprised that Jim slept all morning even after reducing his Lorazepam to 1 mg at 5 am.
He had oatmeal and shake at 7 am and went back to sleep. He showed a little paranoia while drinking his shake
asking me what was in it.
Was able to get him to take his Methadone easily as usual and after I told him I would get Ron if he did
not take his Lactulose he finally took it.
At noon I had to wake him to take his Lasix and Potassium and 2nd dose of 1 mg Lorazepam.
His relatives showed up at 1:30 am and he just stayed in bed and ate his roast and potatoes, carrot cake, juice and biscuits.
He didn't say much and fell asleep after they left around 3 pm.
He woke up at 5 pm and started talking about driving his car, I called Ron to come over cause I could see his personality
was changing. Just as Ron arrived he had to go to the bathroom so I had to get him situated in the bathroom so I could
answer the door. After Ron sat down I was able to walk Jim back to the bed. I left to go to the kitchen
and while I as gone Jim jumped out of bed and went back to the bathroom and he fell at the doorway. Ron helped him up
and I was able to get him into the bathroom and on the pot after much effort.
I left him there for 30 minutes and had to run back and forth many times because his paranoia was setting in
so he kept asking for me.
I think his struggle to get up actually helped to get his bowels moving because he was finally able to go.
I have never been so happy - the new laxative finally worked.
Unfortunately after I walked him back into the bedroom
he had full blown paranoia and was seeing things. So glad Ron was there to see what he was like.
At one point he was crawling on his hands and knees on the floor saying he had to figure this out...
and we had to pick him up and get him back into bed. I gave him his 1 mg of Lorazepam at 6 pm and he seemed to settle down.
I was no longer worried about him trying to drive because he could hardly walk.
Ron left and I thought everything was ok...but then Jim heard Kevin outside working on his boat
and decided he had to go outside to see what was going on. He ran outside and I had to run after him
and grab him before he made it further down the driveway. I waved at my neighbors hoping they would see me frantically
waving but Jim saw them and turned around and went back into the house.
Lucky for me he is too paranoid to see anyone. After I got him back into the house
I had to grab the walker and make him use it because he was wrestling me when I tried to help him walk outside.
I texted his sister to tell her he was out of control again and that she would have to help me this time
of day if I had to keep sticking to this new reduced dosage program. I think this is called Sundown Syndrome
in people with Dementia. She texted back to put him back on his regular dosage.
After walking him around the house so he could see what Kevin was doing in the kitchen
I got him to walk outside to get some fresh air and see the moon. He liked that and then he wanted to sit outside
so I will post a picture of him here sitting out in front of his house for the first time ever.
After about an hour of that he went back inside and finally sat down in the lazyboy and pet the cat and
talked in short phrases about things that seemed to make no sense at all.
I just agree with him because I have no idea what he is talking about.
11 pm he locked the bathroom door (paranoia). I finally got his meds in him at 11 pm
and am waiting for him to get tired enough to go to sleep.
When he woke up during the night he was
also saying things I could not understand but for the first time in many years he wanted to hold me close
and held both my hands. He was never like that even before he got sick and has never been a hand holding person.
When he woke up at 5 am he sat up and said he had a daydream about a girl and said she was happy to be here.
He said he could not tell if it was real or a daydream.
I asked him what she looked like and he said she looked like you...then he went back to sleep.
It could be he is in that other realm with Peggy whom he has been mourning for over 40 years as she was
a girlfriend he had planned on marrying and having kids with in his 30's... but she was found murdered
in her bed the day before she was supposed to move up to Oregon to live with him. It is one of those Cold Cases
an Unsolved Mystery.
Saturday 4/28/18 - A Day of Rest? Nope.
Jim was up at 6 am after a restless night so I didn't get much sleep, so I made his shake and after giving it to him
gave him 2 mg and then he ate his oatmeal and some applesauce.
I just don't have the energy to follow him around all morning so I decided not to try the 1 mg this morning.
So will be 8 more hours of peace I hope and then I will decide if I am going to give him 1 mg of Lorazepam at 3 pm.
He was back to sleep by 8 am. I am tired.
Now to look online for a new sprayer for my kitchen sink cause this one just cracked
and see if I can find a hex bolt in my bolt collection to fix the
riding mower steering as I lost a bolt while mowing. Oh yeah and try to get some work done for a customer that has been
waiting on me.
Well I found a faucet handle on walmarts website but all of a sudden at 9:15 am Jim woke up and
was shaking and asking for help.
I took his BP and it was 141/65 with a heart rate of 120!!! and he was shaking and cold
so I put another blanket on him.
He said he saw his father and grandfather at the end of the bed and I held his hand.
He kept pleeding for me to help him.
I called Vitas and while I was waiting for the nurse to come on the line I had him do
deep breathing exercises - in thru the nose, hold it a while and then slowly exhale out thru the mouth.
I went over his medications with them and explained that I had cut back on his lorazepam
starting on Thursday at 3 pm and that he started experiencing paranoia and distress yesterday at 6 pm after a very
active visitor day yesterday and that he did not sleep well last night.
So now I am waiting for a Vitas nurse to show up. He is still awake and I put his oxygen on him and made him drink more
juice as they said it could of been dehydration.
His previous nurse texted me back and said he needs to be on Constant Care again so I will have to do
that especially since he now has a fever of 100 and his heart rate was 123!!! - too high.
I kept taking his vitals while waiting for a nurse to call and they gradually went down but his heart rate
was still high and he still had a low grade fever. His shaking finally stopped and all we could do is sit
and wait for a nurse to show up. He has never had a heart rate that high so it had me worried.
I told him that we would need to let Hospice bring a hospital bed in because the nurses couldn't lift him up
in this bed so he could sit up easier. I was surprised he agreed to a hospital bed.
The only way I could do it was by standing over him to put my arms under his armpits
to lift him up from behind. I am going to miss sleeping with him, as I had to in order to
keep an eye on him, as I have only been able to do that for
about a week now. I had thought about bringing the twin bed in if I can get it to fit in the room.
Most likely I will go back to sleeping on the couch while the nurses are watching him at night like before.
He didn't want to wear his oxygen anymore, he wanted me to sit there and hold his hand
- I noticed his palms were getting small white splotches.
11:45: Stomach pain level of 6 - I thought about giving him his liquid morphine but felt it was just gas
and told him we should walk a little so...
Noon-Jim stood up told me he loved me and held me as he looked out the window and said
we are back at the house now. Then we used his walker to get to the toilet just in the nick of time
so he could poop - Yeah! The Lactulose is working!
1:30 pm Jim is still having pain of 6 and so I gave him Liquid Morphine and called Vitas again
cause the nurse has not arrived yet - she called me back and is 30 more minutes away.
Heating up the roast I made yesterday for late lunch - Jim is not hungry yet.
Nurse showed up and by 2:15 pm all his vitals were normal so she said keep him on the 2 mg lorazepam
and don't change it. She didn't feel he needed Constant Care yet unless his heartrate and temp went up again.
She felt it was caused by the agitation of changing his meds and people visiting yesterday.
Nurse says fever causes hallucinations but I think he is really talking to his dead friends and relatives.
He mentioned a name called Patrick that was talking to him and also he said a person he described as shorter
and smaller than him that was a secret agent or police officer that was telling him things.
By 3 pm he had still not gone back to sleep since this morning and I gave him his meds and some carrot cake, he
got restless and walked into the LR then laid down on the loveseat and fell asleep.
He is still suffering from pananoia and dementia and I can tell it's going to take till tomorrow for him to catch back up
on his meds. He woke back up at 4 pm and said that there were "names that were given to me last night, me, my mother,
what would your name be?" he asked. He said, "I saw pictures of my grandmother" then got up and had to go to the bathroom again...
so even though I was trying to rest on the couch thinking he was going to sleep finally - I had to get him back
down the hallway in a hurry. Sigh...no rest for the weary. He said he saw his grandfathers picture and
he had to go to his house and fix it - he said they needed him to fix his grandfathers house
because the windows were broken
Lots of walking around the house looking for cats and he's still not asleep and it's 5:30 pm - Groan.
Finally got him back into the bedroom and into the Lazyboy and he fell asleep at 6 pm - Phew.
Now I finally was able to get my website work done.
Trumps Michigan rally was on TV before sunset and I was surprised to turn around and see Jim awake...
it must of been the TV that woke him up. He asked, "how did you know I was up here", I said if you love someone
you can find them easily...he looked puzzled...I was pretending he was in heaven because earlier he kept saying
we were upstairs many times and kept pointing up and he stood up and looked around
and stated "this is my room"
Muscle rigidity or stiffness
Shuffling gait, slow movement, or frozen stance
Tremor or shaking, most commonly at rest
Balance problems and falls
Loss of coordination
Reduced facial expression
A weak voice that is harder to hear
Depression, Anxiety, Agitation Apathy, Delusions, Paranoia
and I said "yes it is". He was still in outer space and I pointed to the TV and said
your favorite person is having a rally just for you...he tried to focus on it. I said how about something to eat, sit down
and I will bring it. So I was able to get him back into bed and reheated his lunch and fed it to him.
Then he had biscuits and carrot cake after that with apple juice. I don't care if he has to be hand fed it is easier
than running around the house trying to keep track of him like I was earlier. It is a releif to have him
more relaxed now in bed than running around the house looking for things and me having to worry about him
losing his balance and falling down all the time. So he is definitely going back on his 2 mg Lorazepam regimen
every 8 hours so I can keep my sanity.
He fell back to sleep at 9 pm and I will be waking him up at 11 pm to get him back on his previous medication
schedule. Thank you Jims well intentioned sister for making my life more difficult.
Sunday 4/29/18 - Up at 6:30 AM - Will I ever get to sleep late?
Fed Jim his oatmeal, shake, carrotcake, biscuits, applesauce, grapes and got him to take his meds and laxative
so he fell back to sleep by 8 am. Earlier he was up walking around in the kitchen wanting more carrot cake
while I was washing dishes - he had 4 big peices so will be baking more today. He also managed to drink
half my coffee so I ordered decaf for him. He sat down in the dining area sofa and talked
about someone showing him his file that they have
on him with information about his parents and grandparents, his whole family including me and my mother.
He feels he is in some kind of trouble
so imagines talking to a police officer or agent about something he did. This could be paranoia or
maybe when he is like this I should ask him to make a full confession.
Yesterday while sitting on the same couch he put his arm around me and looked distant and said "it's all about love".
This is totally out of character for Jim as he is not affectionate and does not talk about love.
I was very surprised when he started telling his sister "I love you" when she was leaving as he never did before
even when I would tell him to.
9:30 am: Turned the volume down on Fox news.
I finally got to sit down and have a peaceful cup of coffee and some of my
this is a luxury because usually I have to drink coffee while running around the kitchen to feed
Jim and the cats. My next goal for the day is to post on craigslist,
then find a bolt to replace the one that fell off the mowers
steering mechanism. And get this done before Jim wakes up again. His sister said yesterday she might come over today
to bring him mishmosh. Her last text said maybe we should ask the dr if we can cut back on his methadone - I didn't reply.
How can I describe what it is like to take care of a full grown adult that is not all there
...it is sort of like: taking care of a 5'10" - 3 to 4 year old toddler that takes off on you when you least expect it.
You have to cook for them and put food in front of them and sometimes help them eat it then clean up the mess.
You have to get them to drink their water and juice from a straw in a sippy cup or juice pouch so they don't get dehydrated.
You have to keep them from pulling off their diapers and make sure they make it to the toilet without incident
and clean up after them if they don't.
You have to do all the housecleaning, yardwork and laundry while they are sleeping.
You have to get them to sit in one place and not move when they are awake if you have to go do something
briefly in another room. You have to keep your ears open for noises like them falling down or something
getting knocked over when you are not watching them.
They are constantly pointing to things and asking - what is that or talking in barely intelligable
language about imaginary things.
You have to get someone to sit with them while you go to the store because that is far easier than
trying to take them with you.
I had thought about asking Kevin to sit w.him but he has ADHD and ADD so can't focus on one thing or sit still that long.
His attention span is like 30 seconds. He eats junk food and sugary snacks.
A heart attack waiting to happen because he needs BP meds and doesn't have a Dr.
His only focus is fishing, golf, work and church keeps him in line-I do not feel comfortable asking him to do anything
that would interrupt his regularly scheduled programming. How do I know all this - from watching him wash dishes and actually
cut himself with a knife while doing so. Very accident prone because of his ADD so is constantly tripping over
things in his own boat and hurting himself or sticking himself in the hand with lures. I am pretty sure I have heard him
talking to himself quite loudly in the shower. Gets frustrated while doing mechanical things and then cusses at them.
Room about as sloppy as a teenage boy but very hygenic about his appearance like a teenage boy getting ready for a date.
He's not 58 - he's more like 16 and has already stated he is so glad he is not married so he can do whatever he wants
and doesn't have a woman around telling him what to do. A perpetual teenager that will probably not make it to 60 because
of his smoking and lack of health care. Yes I have his relatives emergency contact info just in case something
happens to him.
Also because he has already complained of dizziness and chest pains while out working in the heat recently.
There are reasons why people end up that late in life renting rooms or living with their parents - they have issues.
I was busy watering plants and pulling weeds out back when Jim woke up at 1 pm so I heated up the roast w.potatoes
and biscuits, and encouraged him to stay hydrated with juice and powerade. At first I had to feed him the
meat and potatoes after he refused to feed himself.
But then he was able to eat 2 biscuits himself and then more
carrot cake after that- maybe he just had to wake up more.
Sort of like a kid that you have to
make him eat what's good for him first begrudgingly before you let him have dessert. No I did not have to burp him.
His laxative was successful and he went back to sleep at 2:30 pm.
Hey - I never wanted to have kids - I kinda feel like God is now punishing me for it.
Wow Jim is now almost a regular human eating regular food and being regular. Tore his diaper off and wanted to
wear real underwear so he is more aware but was confused by the portopotty. I had removed it from the toilet
because that is what I thought he wanted me to do and while I was in the kitchen he put it back on there.
He also seemed more sane when he was awake
as he didn't seem as spaced out, actually seemed normal - wish his sister could of seen him like that.
You really can't tell he's not sane until he starts talking.
The nurse from yesterday had told me he would have his bad days and his good but to keep him on schedule
and life would be easier for me. She also told me
can cause heart palpitations and low grade fever which is
what he experienced yesterday. He thought he was dying because of seeing his father and grandfather and it scared the shit
out of him, at the time he said "I didn't believe but now I do." I had ordered him a pulse oximeter and it just came in
today so now he can even check his own heart rate and oxygen easily. It's easier to use than the BP cuff.
Jim wakes back up at 4 pm and has his meds then takes a shower, shaved w.assistance, brushes his teeth all by himself.
So that proves the regular dosage of meds are not causing him functionality problems. He keeps referring to upstairs
because he thinks we have an upstairs. He asks me where the cat is and if the cat is upstairs.
The meds do make him tired so
he went back to sleep at 6 pm but after keeping track of his sleep
- he is sleeping the same amount of time as he was before Hospice started.
He woke up at 9 pm and I asked him if he remembered his sister and Niece visiting this week and he does not,
I showed him the picture from when they visited 12 days ago and he gave the family ring to his Niece and
he does not remember that either. That was back when he was under Constant Care April 18th so his memory and mind has been
going for quite some time. He decided to watch the nature channel which was a nice change of pace.
He went back to sleep at midnight and slept all the way to 6:45 am.
Monday 4/30/18 - Up at 6:45 AM - Talking to Angels
Jumped up and made Jim his protein shake and oatmeal and after feeding the animals gave him his meds.
He wasn't interested in eating much oatmeal so I asked if he wanted scrambled eggs - no - he wanted carrot cake
so he had about 2 slices then I sat down in the bedroom at the computer w.my coffee. He wanted more cake so I said get it
yourself and he went into the kitchen and cut himself some more...I can't leave him long unattended so I
got up and went into the kitchen, he had a pile of hacked up cake on his plate and was cutting more.
I said that's enough and I set him down on the couch in the dining area and as he was eating his cake he told me about his
conversation with that girl and other people again.
He said they (meaning the doctors and nurses he talked to in his mind) said they didn't know what was wrong with him.
The girl told him he was very old. That was all I could get out of him.
After he finished his cake I got him to drink some juice and he got back up to walk down the hallway on his own
and then peed in the portopotty that he had moved next to the window - thankfully I had the bucket below it.
I didn't get upset - I just asked if he was going to poop yet and he said no and got into bed and went to sleep.
When I say got into bed - I have to help him get his feet up into the bed and get him to scoot over so he's not
hanging off the edge then cover him up.
I will try to shampoo the carpet later but the noise would wake him so will just have to spray the foaming kind on it
and do some scrubbing then throw a disposable pad down on the floor. Shampooing will just have to wait.
His new nurse Michele called at 9 am and we talked about what happened w. the change of meds last week and she said
she had seen that before. Most of these nurses had worked in nursing homes and hospitals previously so have seen it all.
She will be bringing him the Chocolate Ensure I had asked for last week and some apple juice on Thursday.
It turns out they ship meds but the other things the nurses have to bring with them after their mid-weekly meeting.
They have a group meeting once a week to discuss things about various patients with each other and I would assume
the Dr is at these meetings. She reassured me that if he had another high heart rate and high temp episode he would
then get constant care and a hospital bed.
Ron will be coming by at 11 am to watch him so I can do my weekly walmart pickup.
Jim woke up when he heard me pull back into the driveway at 11:30 am - Ron stayed long enough for me to put groceries away
and I told him - same time next week. It will be nice to have a certain day each week that I know I can pickup groceries
at the same time, at 11am Jim is usually asleep so then easy to keep an eye on.
His sister came to visit at 1 pm and he was still asleep so I took advantage of having her here to watch him and
mowed the back lawn.
By 2:30 pm the time I was done he was wide awake so I rushed into the kitchen to dish out some lunch...
even though he was saying to his sister he wasn't hungry I made him sit down and eat it while his sister was trying to get some biscuits
heated up for him. He was becoming schitzoid and refusing to eat so I had to make him sit down on the couch and put
my arm around him to keep him from getting up and put the food in his mouth..he chewed it and swallowed it but was
saying the whole time he needed to do his coffee enema....he does not remember being regular 4 days in a row
now from the new laxative they gave him. He even refused to eat his biscuits and carrot cake but finally I got him to sit on
the love seat in the LR at 3 pm and got his meds in him - Phew...he continued to argue but eventually fell asleep
there. His sister went home. I can't believe it, as it wasn't even 3 pm yet when his meds were due and he
was getting out of control.
He kept saying he was in pain is the reason he needed an enema so I was trying to get him to take the liquid morphine
at that time but he refused. He was not in pain - he was just agitated because his meds were at the end of their cycle.
I will make sure to get them in him before I feed him next time. The nurses told me you have an hour after the 8 hours to get
him to take them but not him - with him apparently he needs them at the very least 15 minutes before the
8 hour cycle is up.
I also explained to his sister earlier that he did not remember them visiting last week or the week before that.
In fact when Ron was here today - he asked Jim who he was and he said Clyde...so he didn't even know Rons name.
After he fell asleep I took a short nap because all that yardwork and wrestling with Jim wore me out.
Jim woke back up at 5:45 pm - when he first woke up he was still
wanting to do his coffee enema and I walked him back to the bedroom to get him to lay down hoping he would
be able to get some rest.
I went back in the kitchen and made myself a 2nd cup of coffee for the day, unusual for me to need one
and sat in the bedroom at my laptop again.
I noticed he was very curled up and restless, asked him if he was having any pain - he said he had a pain level of 7
so I gave him the liquid morphine and was surprised he didn't fight me over taking it like he had earlier.
Sigh - I sure hope he has a bowel movement today. I still keep putting Miralax in his water and he finally took his 2nd
dose of Lactulose today. His temp,
pulse and oximeter reading is fine.
7 pm: Yeah! - after 3 Fleet enemas to get things moving - Success. My mother used to be a nurse for over
40 years and when she had geriatric patients as a student nurse she
said that when a difficult patient finally went - the whole staff on that floor would be happy.
To be more politically correct and to practice better writing etiquette to celebrate
this magnificent event the words stool, bowel movement and BM will from here on out be used in place of the word poop.
And to make me happy Jim agreed to put his
adult protection underwear back on...another reason to like Liquid Morphine.
Wednesday 5/2/18 - Up at 6:45 AM - Sister and Niece Visit at 2 pm Today
I was expecting them to visit Tuesday but they changed plans and so will come today.
Jim really needed to recuperate from Monday so he slept all day and really needed it.
I did too - took a nap Tuesday afternoon when I found out they weren't coming.
He is still struggling with being regular but at least he is no longer mentioning doing the coffee enema.
I expect them to bring him Whoppers today for lunch sometimes after 1 pm.
I made him decaf coffee and breakfast sandwiches the last 2 mornings cause he is getting tired of his oatmeal.
I can't take the time in the kitchen in the morning to make bacon and eggs because I have to get
his food in front of him right away or he gets up to look for it and I can't keep an
eye on him if I'm cooking. He is unsteady on his feet when he gets up in the morning from all the meds.
He had that and 3 peices of carrot cake this morning and his protein shake then fell back to sleep at 8:15 am.
Nice and calm yesterday - so we shall see what happens later today.
I appreciate that my neighbors actually read my posts because I'm pretty sure his sister doesn't.
It would be nice if she would try to read it every day and read the previous posts to stay updated.
Vitas even called yesterday to ask if everything was ok and if there was anything else I needed.
He was able to feed himself and go to the bathroom on his own this morning.
Nurse dropped off a case of Chocolate Ensure but had to reorder the juice.
I started boiling ribs to make BBQ around 10:30 am and got them baked along w.brussel sprouts and biscuits just in time
for Jim to eat them when he woke up at 1:30 pm. He was all done eating before his sister showed up with the Whoppers
but I had to get him to eat as soon as he woke up so he had the ribs and will have those hamburgers tomorrow.
I can't make him wait to eat, he has to eat when he wakes up or he comes into the kitchen
looking for food and gets in my way, he will not wait.
After I was all done feeding him and he was working on a biscuit
Ron dropped off a bolt I needed to help fix the steering on the riding mower.
Right then Jims sister and niece showed up, so didn't have much time to talk to Ron.
Jim was getting sleepy after they arrived cause he had just eaten which I explained is
because of the carb crash you get after lunch. At least he was more awake and aware then last
week when they were visiting. I'm tired so will wait till it's cooler out and Jim is asleep
before I try to repair the riding mower and do some weedwacking.
So much for me getting any work done, after I woke up Jim needed a 3 Fleet enemas again to get things started
then his laxative finally started working. I put it on the ScyFy channel for the rest of the evening so
at least he is willing to watch other things.
Thursday 5/3/18 - Up at 6:30 AM - Nurse Doesn't Show Up
7 am: Made Jim Decaf, brkfst sandwich, oatmeal, meds, peed and sleeping by 9 am.
Jims new nurse did not show up at 1 pm.
When he's real tired in the morning he still needs to be hand fed, later in the afternoon he will be more awake
and can feed himself.
He may be eating more but his weight is down to 116 lbs so it just doesn't put any weight on him because
the cancer is hypermetabolic and burns up all the calories.
Any extra weight he had previouly was just the fluid from
He no longer reads, just watches tv and sleeps. I'm glad he can walk to the bathroom still but I try to
help him walk as he is very weak and may fall over - he refuses to use the walker.
Later in the day when he is more awake he can walk around on his own.
Will be asking the nurse today for another portopotty to have near the bed cause his ability to get to the bathroom
will not be improving. He is what you call "actively dying" - anyone that thinks otherwise is in Total Denial
you know who you are - and needs to read the book
it's totally Free to download and is not a very long read.
At least he is willing to wear his
adult protection underwear
Sure hope the nurse remembers to bring juice today as I've asked them 3 times. They won't give you a catalog
of what is paid for by medicare but if you think about it - if he were in a hospice facility they would be
providing all the meals so I should be getting the same supplies as what a facility gets.
So I am going to do some research and make a list of what I feel they should be providing
and give this to her and discuss it with her. They will provide all Ensure products which are shakes, juices,
puddings and jellos. They will not provide meals for at home care. I would assume Ensure has a contract
with Medicare to provide all nutritional products.
Well the nurse didn't show up so by 3 pm I called and found out she was sick - strange that no one called to tell me.
I had assumed she would show up to count his meds and order more so instead I texted her what Jim needed.
Friday 5/4/18 - Up at 6:30 AM - Nurse Supposed to Show up at 2 pm
Fedex delivered the meds I ordered yesterday by 10 am today
- which was good because I just ran out of Methadone last night.
I am counting all the pills now so I can figure out how long they will last.
I don't understand why they don't just automatically refill them as they only give you a 7 day supply.
Jim had his oatmeal, decaf and carrot cake this morning and has been sleeping since.
He slept until his sister showed up at 2 with her famous Sheperds Pie and so he had that for lunch
along with biscuits, chocolate shake, apple sauce and pudding.
The nurse showed up and we went over his meds and what happened this past week.
He fell asleep for awhile so I went out and did some weedwacking.
Then he woke back up around 5 pm and I got him to watch Unknown Expeditions, made him some icecream w.chocolate syrup.
His sister had asked me if he would eat icecream but he would not reply while she was here
so I made him some later to see if he would eat it and he even had a 2nd bowl.
So now she has another treat she can bring him. Guess I need to ad that to my shopping list along w.more pudding.
These are all foods he would not touch before but now he doesn't care what he eats, which is nice.
I plan on getting a few meals I can heat in the microwave for him to save time and make my life easier, of course
he won't know they were made in the microwave as they will be served on a plate. Just in case
he is still paranoid about microwave food.
Saturday 5/5/18 - Up at 6:30 AM - Nice to be on a Schedule
Oatmeal, Decaf, 3 Chocolate Ensure Shakes and I am so glad he is wearing
adult protection underwear
as those new Ensure shakes really worked well this morning.
Requested Ensure Clear juice drinks and asked the nurse if they will also provide other Ensure products so
she is going to check on that. Hospice will not provide food but Ensure products such as pudding and jello
they may provide - we shall see. If they will provide them - I will take all I can get- after all
Jim put into Medicare all his life so why shouldn't he get them.
I ordered another PortoPotty to put next to the bed for later on when he can't make it to the bathroom.
I found out from the nurse the closest Vitas Hospice facility is all the way in Longwood and Ocoee so I said to Jim
in front of his nurse and sister
- "Well I won't be shipping you off anywhere"...we all got a big laugh outta that.
Jims sister is finally accepting the med schedule he is on
after seeing his episodes of agitation, anxiety, paranoia and restlessness could
only be controlled with 2 mg Ativan every 8 hours.
She knows now what his awake and sleep schedule is and is prepared
to help me move furniture so we can get
the hospital bed and a couch or twin bed to fit in the bedroom.
She now understands that he eats better if I feed him by hand
rather than expecting him to feed himself.
I told her the story of how K.next door had to feed her husband that had lung cancer Ensure thru a stomach tube
because he could not swallow so now she gets the picture of how bad things can get. I pray it doesn't get to that point.
She showed up when the nurse was here 2 weeks in a row now
and is getting a better understanding of the struggle I go thru
just to get him to be regular. The nurse related some stories of what she had gone thru with
patients that had BM difficulties. Jims sister is now no longer upset that I insist that he wear
adult protection underwear.
I think she finally realizes that he is not going
to get better or gain weight no matter how much he eats. She is just happy he can still eat and has an appetite
and will eat her cooking. I think now she finally realizes that I cannot
ever leave the house except for 1 hour a week to pickup groceries
when I can get a neighbor to watch him. She also volunteered to watch him when I need to go get things
but I want to stick with a neighbor for now as it's for such a short time.
So now I know when he will be sleeping I am able to get yard work done
and work on the computer more. It's a good thing I work from home so it doesn't
really bother me that I can't go anywhere - no place I need to go anyways
except to visit my mother. Luckily my sister from SC is coming down to visit next week
for a week and they will drive over to see me the end of next week.
All is calm for now.
Jims sister texted to ask if she and his nephews family could come visit and of course I said yes.
I was so glad he was regular this morning so he would not be as agitated when they were here.
I decided to wait until they arrived at 2pm before waking him up so he would get plenty of sleep.
After a little Powerade he was able to walk out into the livingroom and shake his nephew hand
then sat on the couch. His 8 hour meds had worn off by then so he was able to be more cognisant
and talk and listen and answer questions. I heated up a hamburger and fed it to him while he sat on the couch.
Then his sister surprised him with something he hasn't had in 4 years - A Drumstick Icecream.
He had to rush to the bathroom after that and after he got out he started going thru drawers again looking for things...
I realized I was an hour late with his meds so got him to take them right away as he was showing manic behavior.
We walked back into the livingroom.
He was more awake by then and stood up and was trying to use the trampoline with the walker for balance.
The kids wanted to get in the pool and his nephew was able to get him to go outside and sit on the side of the pool.
It takes 2 strong people to get him to sit down like that. He sat for awhile and I got some pictures.
Then they helped him get up and set him in the outdoor recliner, he decided he wanted to stay there until after they left.
He fell asleep for awhile and I took advantage of the outdoor time to pulls weeds and water plants.
He surprised me by getting up out of the chair on his own then I walked him back inside
and put him into bed.
His sister texted later to ask if they could have a BBQ pool party here with his niece and nephew and their 4 kids
and I said yes but that Jim is only good for about 2 hours then has to rest.
So we shall see how that pans out. Later in the evening I got him to watch Altered Carbon on Netflix after
I gave him another icecream and a pudding.
Sunday 5/6/18 - Up at 7:00 AM - Icecream, Relatives and Netflix
I didn't sleep well last night so got up later than usual feeling pretty tired. Jumped up and got Jim his
Decaf and more Ensure Shake and fed him his Oatmeal.
I was on the computer when he had gotten out of bed and was trying to straighten out the bed pad...
so I thought - this is a good time to change the sheets and got that done while he was standing there.
Then I smelled something and asked what it was, he had no clue he had a BM in his adult protective underwear...
so I walked him to the bathroom, cut them off and got him onto the pot right away.
Apparently he has no feeling back there at all so can't tell.
So glad they are tight fitting and he doesn't have diarrhea - Phew...but dealing with that is still a workout.
I tried the small kind with the tabs but they just do not fit as tight as pullups. May come a time later when
I will need to use the tab kind though when he can't get out of bed anymore.
Everytime things like this happen I keep thinking to myself I need a nurses aide to show up but knowing
what time would be best is difficult. It would be great to have her feed him while I work in the kitchen
but that would mean having her arrive at 7 am. Hospice allows for a CNA 2 times a week if needed for an hour
each time. One of the CNA's told me they only get $10 an hour and most of them opt for Constant Care so
they can get more hours in - in one place. So I got the feeling that if you had them do a whole lot of
messy stuff on just a 1 hour visit they would expect a tip...that's just my read on it. I sure hope
they get reimbursed for mileage.
For now I can handle things - I just need to try to take more naps while Jim is asleep. Like mom said
you get your rest in while the baby is sleeping. I'm not at the afternoon nap stage
much yet and it seems like right when I finally lay down to take a nap
Jim wakes up. Well no nap for me.
Had to ask Ron to come by later afternoon cause Jim was refusing to take his meds at 3 pm
and finally got him to then he had 3 peices of carrot cake.
I was the oldest of 5 kids so was changing diapers and babysitting by the age of 10 and
even before that rocking cribs at 2 am when I was 7 and floor rockers while watching TV
while mom cooked. So after taking care of my siblings until I left home after high school
I swore I would never ever have kids. I know God has put me in this place at this time for a reason
so I could have another wonderful life experience.
I think I'm going to opt-in to be Spun Up
into another Sleeve like on Altered Carbon. I read an article where they are already working on
uploading the human brain into the cloud for storage and download later. And there are now new advances
in Cryonics in Texas. Alcor
based out of Arizona already is a leader in the field of preserving organs for transplant. Organ Transplants mean
big bucks for the medical industry so any company successful at that will be at the leading edge of
Cryogenics. Nectome hopes to demonstrate a fully uploaded simulation of “a biological neural network” sometime around 2024,
according to its website - that is only 6 years from now. Hmmm..maybe I can talk Jim into offering his brain for
Cryonics Research :) I will ask him after he finishes watching a few more episodes of Altered Carbon. A Mammals Brain Has Already Been Cryonically Preserved
and Recovered Brain Preservation Breakthru
Monday 5/7/18 - Up at 6:30 AM - Walmart Pickup Day
Decaf, oatmeal, carrot cake, meds then he fell back to sleep and I worked on the computer until
11 am when Ron arrived to watch Jim so I could pickup my grocery order at Walmart.
Made a Roast w. pot.carrots, celery and onions and Jim woke up at 2:30 for that with biscuits then icecream.
I even got him to brush his own teeth and he took all his meds for me with no fuss
and went back to sleep.
He did finish watching Altered Carbon and has decided he wants his brain uploaded to the cloud to be downloaded later
into a Persian cat so he can laze around the house just like he is doing now. Great - another cat to take care of.
I will email Nectome to see if they will accept his brain for research - I read they are wanting $10K per upload
so not sure they are taking brain donations. But if I told them he wanted to be downloaded into a cat
that could make headlines for them and then I could create a Cat Cam so people can subscribe to watch Cat Man.
There are a lot of money making possibilities that would help to pay for his finicky cat food taste.
He also likes the idea that after he has used up his 9 lives he can come back as a dog and maybe by then
even as a human in a healthier younger body. I told him he was going to have to come up with a way to make money
to pay for all this long life of immortality so the Cat Man Cam would help with that. Until everyone starts doing it
and then we will have to come up with a new money making idea. I wonder if that $10K is a lifetime fee or
is a per use fee. Hmmm....I could see a new career for myself selling Upload Subscriptions online for big bucks until
everyone starts doing it and then it will go the way of all those cheap genetic dna research services.
Wednesday 5/9/18 - Up at 6:30 AM - Jim was up all night Tuesday
I didn't get much sleep and ended up sleeping on the couch because Jim was restless up and down out of bed all night
and wandering around, even this morning after getting his meds at 11 pm. He had Sundown Syndrome yesterday afternoon
so was up all night before his 11 pm meds. At 7 am this morning his BP was 142/93 Heart rate of 108 and was very cold.
I remember last time they said to get him to drink more fluids so I tried what I did before- trying to get him
to drink a shake but he didn't want it. He was paranoid and seeing things again and saying names of people
that were not there.
So I spent all morning trying to get him to drink lemon water and apple juice a few sips at a time.
He refused to eat and was having pain this morning so I called the nurse.
She thinks he may have a UTI so she ordered a test kit and Cipro to be delivered.
I am still trying to get him to drink more lemon water and apple juice to try to get rid of the infection.
Gave him liquid morphine twice this morning because of the pain and a 1 mg Lorazepam.
He is finally sleeping at 11 am. 2 Cups of coffee for me this morning dealing with this and not having enough sleep.
At least his laxative worked this morning but his urine is too dark from dehydration.
The nurse dropped off a whole case of apple juice and will be back Thursday with strawberry Ensure for him
cause they are out of chocolate but he said he would drink it.
I really hope he doesn't have to take Cipro as that will cause even more health problems.
Noon and he is finally fast asleep so I took a quick nap in the LR till my phone woke me back up at 2 pm
and I saw Jim standing in the hallway-the floor was wet in front of the bathroom so apparently he
barely made it. I should of tried napping in the bedroom but couldn't with the TV on.
2:30 pm The riding mower got returned
w. steering fixed, oil changed and new blades - glad to get that done.
My goal for the rest of the day was to get Jim to pee into this cup the nurse left so they could test for a UTI.
So when I woke up of course it was too late to catch him at the right time so I spent 2 hours
trying to get him to drink powerade while his sister was visiting.
He refused to eat the macaroni salad she had brought and didn't want the hamburger either,
would not drink his chocolate shake so he was being very stubborn.
He fell back to sleep after mumbling about things that made no sense. It was obvious he was going to sleep for awhile
so his sister left.
I had explained to her that he was up all night and what I had gone thru all morning.
I can't fall back to sleep again cause I need to catch him when he wakes back up to pee.
At least I was told to give him extra meds next time he is in distress so I can get some sleep.
8:35 pm and he still has not woke up but I am still here ready and waiting with the little cup - LOL
I just know when he wakes up I am going to have a very annoying person on my hands tonight.
Before he went to sleep he refused to eat or drink and was hearing things that were not there and talking nonsense
so it may be another very long night. I am probably going to end up having to sleep on the couch again
out of exhaustion and hope he doesn't end up running
down the street in his adult protective underwear.
Thursday 5/10/18 - Up at 6:30 AM - Quiet Night
Surprisingly Jim did not wake up at all after his sister left yesterday and I had to wake
him up at 11 pm to give him his meds. He slept all the way to this morning and I woke him up at 9am
to give him his meds again. He drank 3 Ensure shakes and ate a breakfast sandwich then went back to sleep.
Still asleep at noon. I'm waiting for the Lab to pickup his urine sample and nurse to show up from 1 to 2 pm.
The Cipro was already delivered by Fedex this am but we want to make sure he really needs it.
She also ordered and had delivered a stronger methadone pill because if this agitation and pain is not caused by a UTI
it means the pain is caused by the cancer and so his dose of Methadone needs to be increased.
So we are now prepared for either scenario. I've also been told to give him his Lorazepam every 6 hours because
it is wearing off before the 8 hours. It is hard to tell he is experiencing agitation or distress as he doesn't
tell you he is...the only way I can tell is by facial expressions or if he touches his face alot.
I take advantage of his sleep time to water plants, pull weeds and treat for fire ants after working
on the computer all day yesterday and early this morning for my customers. Will be needing to mow the lawn soon
if I can get someone to watch him while I do. I try to schedule doing things while he is sleeping but it's hard to know
ahead of time exactly when that will be sometimes.
I will ask his sister to get me a can of gas next time she visits and try to mow while she is here next time. We talked about
charging up the batteries on his cars and having her drive them around a bit too. I would like her to have a peaceful
Mothers Day weekend with her kids so hopefully Jim will make it thru this weekend smoothly.
Jim slept until 1 pm and had his sisters macaroni salad and 4 containers of Ensure apple juice and ice cream,
then his laxative started working...or it could of been all that apple juice he drank cause he was so dehydrated from
hardly drinking anything the day before.
I was all done cleaning him up and washing my hands in the sink right next to him thinking he was going to remain sitting
and instead he decided to stand up and lost his balance fell backwards and scraped his back up.
He didn't even feel it but it looked pretty bad.
I walked him back to the bed and cleaned up the abrasion and put aloe on it. I called Vitas to file an incident report
and they later sent a nurse to check on him. He was getting Sundown Syndrome around 5 pm so had to give him 1 mg Lorazepam
to settle him down.
Friday 5/11/18 - Up at 6:00 AM - Up All Night
He spent the rest of last night in the lazy boy - even after I gave him his meds at 11 pm he still would
not go to sleep. I even gave him the new nighttime Temazepam at 11 pm and he still didn't fall asleep.
So he was wide awake at 6 am when I woke up, gave him his chocolate shake, breakfast sandwich and carrot cake
, 7 am meds and then he finally went to sleep.
Nurse is supposed to show up around 2pm today but never did. Will be interesting to find out if all this restlessness is caused by
a UTI or pain...nurse is supposed to call me as soon as she finds out-but she never did.
Jim had Sundown Syndrome again around 5 pm so I gave him 1 mg Lorazepam.
I was able to get him to eat a little pasta w.alfredo sauce and a biscuit.
His weight is down to 110 lbs...while mine has gone up to 106 lbs. No matter how much he eats the high metabolic rate
of the cancer just eats it up along with what is left of his muscle and fat. This is the skinniest he has ever been
and I didn't think he could get any skinnier. It is getting harder to get him to eat in the few hours that he is awake.
He is most awake later afternoon early evening. I try to put Netflix onto a long running show to keep him occupied.
Friday night we started watching the 3% until he fell asleep around 1 am.
Saturday 5/12/18 - Up at 6:30 AM - Quiet Day
Jim had Decaf, a couple chocolate shakes, and few slices of carrot cake then fell asleep...probably won't wake up until 2 pm.
I took advantage of his sleep time to pull weeds, trim the roses out back, post on craigslist,
talk to and text a few customers and get some invoicing done.
My sister from SC that had come down on Monday to visit my mom - returned on Thursday so they were not able to come visit
this weekend as I had anticipated. She got mom a new Lift chair and did lots of cleaning and painting while there.
She hasn't seen her in 3 years so had lots of catching up to do. Was glad she was able to stay that long as she has a
hard time getting away from work.
I am hoping Jims sister will be able to watch him for 5 hours in 2-3 weeks from now so I can go visit my mom
as I haven't seen her since she came to visit for Easter.
Will wait to find out what day is best for her. Jim is easy to watch as long as he's sleeping - it's just after 2 pm
is when he needs his meds on time or he could start sliding into his other personality. I think his sister can
handle it if she makes sure he takes his meds on time and then helps him to eat and go to the bathroom.
The going to the bathroom part is something she has no experience with and am not sure if she can handle having
to help her own brother that much. So my plan is to leave at 10 am right after he falls asleep
and get back by 3-4 at the latest. He has trouble walking to the bathroom now and has to be made to stand in front
of the commode or made to sit on it - as he gets confused sometimes.
He has problems removing and putting back on his adult protective underwear and
he sure can't wipe himself anymore. He also loses his balance sometimes when standing and could fall backwards
so I have to keep my hand on his back when he's in the bathroom. He doesn't like using the walker or a wheelchair,
instead I walk him around by holding both hands
and pulling him in the direction I need him to go or put my arm around his waist. Or I have to put my hands on each side
of his waist from behind to get him to move around. So far his sister hasn't had to do all that yet. I have tried to get him to
use the portopotty near the bed but he prefers to walk into the bathroom most of the time.
3 pm Jim finally woke up and had powerade w.his meds, a few bites of meat and potatoes and then 4 biscuits and icecream...
couldn't get him interested in eating macaroni salad or mish mosh or even hamburger so whatever I can get him to eat is what
I give him. He went right back to sleep. His sister texted to tell me his other sister from St.Louis will be here to visit on Tuesday...
Gulp - this is the sister he does not like and even said he didn't want her to come...this will be an interesting week.
Sunday 5/13/18 - Up at 6:30 AM - Mowing Day
Jim had Decaf, 3 chocolate shakes, 3 carrot cakes, changed his Patch, asleep by 8:30 am so I decided to mow the lawn,
blow the driveway and clean the pool filter. Got back in at 10:30 am and Jim had just sat down and had his adult protective underwear
full of BM in his hand. I got it from him and put it in the wastebasket then put my gloves on and used the sponge
I keep in a bucket in the bathroom to clean up his legs and saw nothing on the floor. He did pretty good
on his own considering he pulled them off by himself. I regret being outside doing yardwork a little too long even though
I had just checked on him 30 minutes ago after I got done mowing.
Luckily everything was pretty firm since I skipped a dose or two of his lactulose. Got him cleaned up and fresh
underwear, although he was fighting me on keeping them on this time. Then walked him back to the lazyboy
and turned up the tv. He didn't want anything to eat
and fell back to sleep for a little while then woke back up so I brought him some apple juice.
He is talking to his cat Mandy who hides under the bed.
Well I wanted to do some weedwacking and raking out front but I can't until he falls back to sleep.
The camera is useless when I'm mowing cause I can't hear it. Oh well at least I got the hardest part done. I'm
trying to get the place looking nice for when his other sister and her husband visit on Tuesday.
3 pm finally got Jim to eat Shepards Pie w.2 biscuits and butterscotch pudding for dessert...then he fell back to sleep
so I was able to go out and weedwack until I ran out of battery power then watered the plants.
Now to mow behind the pool - got that done and even did more weedwacking. Jim woke up at 6:15 w. Sundown Syndrome
so I took him outside and he walked all the way down the driveway
then all around the house and down to the lake. He started slowing down as we walked back up the hill and I was worried
he would not make it but he did although very slowly. After I got him to sit in the Lazyboy in the livingroom
I got him a shake and 1 mg lorazepam and we sat and watched Law and Order until he fell asleep. Then
I got him up and walked him into the bedroom to lie down. Then he wanted an icecream at 9 pm so he got that
and we continued to watch Law and Order until he fell asleep and I managed to wake myself up to give him
his 11 pm meds.
Monday 5/14/18 - Up at 6:30 AM - Rainy Day
Fed Jim his Decaf, Breakfast Sandwich, 3 shakes, meds and then had to get him into the bathroom.
Had a wrestling match getting him to get close enough to the commode. He insisted on taking off
his pjs and adult protection and in the meantime pissed on himself and managed to fall backwards
against the wall and broke the glass on a picture he had hung there...so that picture is now in storage.
So that will not happen again - luckily he did not get hurt.
He was very uncooperative this morning so I had to take him by both hands to guide him to get back over to sit
on the bed so I could put his adult protective underwear back on.
I was mad and told him "from now on - no more walking to the bathroom - you are going to use the one near the bed."
He finally fell asleep. I should of given him his meds before feeding him but he's barely awake when he's eating
so I need him to be more awake in order to eat...unfortunately I think as he eats whats left of the lorazepam
in his system wears off and he becomes combative.
I have lots of work to do online this morning.
Ron will be coming by at 11 am to watch Jim while I got get my Walmart pickup order.
2nd cup of coffee, so glad the rain has stopped as it seems like it is always pouring when I go to pickup groceries lately.
After I got back I cooked another carrot cake for Jim and biscotti cookies for myself.
Kinda tired but managed to vacuum since his sisters are visiting tomorrow. Jim would barely wake up at 3 pm
when I had to give him his meds so I just gave them to him and let him sleep. I kept asking him if he wanted to eat
but he said no. Nurse said his urine test was clear but still has not got the report back yet. So if he doesn't have a
UTI which I don't think he does then it must be something else agitating him - like more pain.
He hasn't said yet he is having any pain so I have not yet increased his methadone to 10 mg which is what they sent
7 pm finally got Jim to eat some venison sausage Kevin had just cooked - the smell woke him up and he ate
a whole sausage along with his sisters macaroni salad and a butterscotch pudding. He's sitting on the edge of the bed
staring out into space but says he is not in any pain but looks like he's in distress cause he keeps touching his head
and his face looks strained.
His BP was 94/70 and 96 heart rate kinda high for him so I got him to lie down and put the oxygen on him. Tried to
get him to drink diluted apple juice with ice but he never drinks enough of it.
Ah...laying down helped his heart rate is back down to 75 and no more of that distressed look. Maybe turning
the TV back to Fox News helped too.
Tuesday 5/15/18 - Up at 6:30 AM - Rough Day
Jim refused his meds this morning I had to call Vitas and his main nurse Michele helped me get him to take his Methadone.
I thought he was ok after he ate and went to sleep but after he woke up at 3 pm he again refused to take his meds
so I called Michele and told her to order Contant Care. A Constant Care Scheduling nurse showed up to talk to me
to find out what was going on - she could clearly see he had dementia. She said it could be the 3rd day of the Patch
wearing off so that I might consider giving him Liquid Morphine that day to settle him down so he would take his
regular meds. I did that this morning but it was still difficult to get him to take it.
He was spitting out his meds this morning. Then he went to sleep after he ate breakfast.
Then in the afternoon he did the same thing to me - I had to get Ron over
to help me to get him to take his meds. By that time I had called Michele and told her to order Constant Care
as I was burnt out and overwhelmed not having gotten enough sleep. I was lucky to get 6 hours of sleep the last few nights.
After Jim finally got his meds in him he settled down and slept thru the night and I went and slept on the couch.
Our days of sleeping in the same bed are over as this hospital bed is a twin bed. I will be moving
a twin bed from the guestbedroom to put up against the wall so the nurses or I can sleep on it when
we have to keep an eye on him at night. I plan on using the time they are here to sleep on the couch to catch up
on my sleep cause I am really dragging.
Nurse helped me drag the old futon out onto the lawn and I posted it for free on letgo, offerup and craigslist
in the hopes of getting rid of it lest Jim see it.
So now I have plenty of room to move his bed into the guest bedroom-hurray - I have been wanting to
get rid of that thing for years.
Wednesday 5/16/18 - Up at 6:00 AM - 1st Day of Constant Care
I woke up early and rushed around to feed the animals and make myself coffee. Removed the 2 futon matresses
from the guest bedroom and stacked them under Kevins mattress. Dragged the futon frame out so I could
get help moving it later. Am needing to make room to store Jims bed in the guest bedroom because a hospital
bed is coming. I bagged up the stuff in his bureau to make it lighter to move out of the bedroom.
Started Kevins laundry. Got Jims shake ready and got him to take his meds but it was difficult as he was wanting to spit
them out again. I made him keep the Lorazepam in his mouth until I knew it was dissolved then finally got him to take his
methadone. He agreed that he would eat a breakfast sandwich. He drank 2 more shakes after the nurse arrived
then fell asleep.
10:15 am His Nurse Michele arrived to check on him and talk to nurse the day nurse who had arrived at 8 am.
Jims sister will be arriving today at 2 pm with 2 Whoppers for him - I hope he will be awake enough when they are
here to eat at least 1 and talk to them.
Well they got here kinda early 1:30 so he wasn't awake yet but he was already sitting in the lazyboy so they cut up the
Whopper and the nurse fed it to him and he even knew who his sister was. He fell asleep while drinking his shake
and spilled it all over himself so the nurse and I took him into the shower and cleaned him off then put a fresh shirt and adult protective
underwear on him. I have been trying to get him to take a shower so glad she was there to help
get him into the shower, so glad we got that done. We got him back into bed and covered up and he fell asleep.
His sisters said they would be back tomorrow after 2 pm next time. So that went well - at least he recognized his sister
although he was too out of it to say much. The nurse gave him pills by putting them in pudding so he swallowed them easier
cause when I tried to get him to take a pill with water he made a fuss. So from now on I will try the pudding method.
With Rons help and his dolly we got the chest of drawers and bedside table moved into the guest bedroom
and pushed the queen bed w.Jim in it up against the wall...so now we have plenty of room for the 38"
width hospital bed that is coming tomorrow. This way after they assemble it - we can just move Jim over to it
and then move the queen bed into the guest bedroom-and the twin put in it's place and made into a day bed.
Or if there is enough room I may just leave the queen bed up against the wall and throw some pillows on it and call it
a day bed. At least this way I can still sleep in that room if I want to and when the nurses are here at night to
watch him I can sleep on the couch. It is nice to have a break from having to worry about him getting up
and falling or after getting up - thinking the floor is a toilet. You have to grab him right away and put him
in front of the commode or on it and that is not an easy thing to do. Think of trying to manuever a very drunk
person to get them to the toilet on time and then get them to aim it while in a stupor.
I prefer using the hand held urinal as this way he doesn't have to walk anywhere and it's less messy.
The nurses have agreed with me after seeing the difficulties of leading him to the bathroom and getting him to
stand up and aim straight.
Thursday 5/17/18 - Up at 6:30 AM - 2nd Day of Constant Care
Jims 2 sisters showed up at 1:30 pm and after he finally woke up they joked around with him.
He had a Whopper for lunch and then icecream. His sister from out of town said she would be back the next day
but they were running late getting to the airport so she they didn't make it.
Friday 5/18/18 - Up at 6:30 AM - 3rd Day of Constant Care
8:30 pm and the day nurse left at 7:30 pm-she had been here since she relieved the night nurse at 8 am.
They work long 12 hour shifts. Jim had woke up around 3 am and kept his night nurse very busy
- apparently his Lorazepam wore off
very early. So when I woke up at 6:30 am I gave him his meds right after I woke up and quickly
made him a breakfast sandwich and
shake and got him to sit back down in his new hospital bed. I felt sorry for the young night nurse
having to deal with him being up for so many hours.
If she had told me I would of given him liquid morphine to settle him down - I had no idea he would do this at 3 am.
She left and a new day nurse came in and Jim was fine the rest of the day until 5 pm. They had given me a gel to put on him
with gloves on to settle him down and although I put it on him at 5 pm - he still was restless and by 8 am I had to give
him liquid morphine to settle him down again and got him back into the bed. The nurse told me to keep it off any
tv stations with violence like Law and Order because she felt it was bothering him.
I recall the nurse from last night also
had mentioned that too. So now I have him watching english dramas on PBS or the hallmark channel...something so boring I hope
it will put him to sleep. He had pizza for lunch and then pudding. We didn't have a nurse show up after 8 pm so I was
on my own the rest of the night. We watched a new show on Netflix and he fell asleep around 11 pm but I had to wake him at
3 am to give him Lorazepam because of the new meds schedule.
Saturday 5/19/18 - Up at 6:30 AM - 4th Day of Constant Care
Day Nurse has been here since 8 am and will be relieved by a new nurse at 8 pm. Jim has been more stable today now
that we have him on a new med schedule of Lorazepam every 6 hours. He woke up at 9am for breakfast sandwich, carrot
cake and chocolate shake. Slept until 2pm then had hamburger and powerade for lunch then went back to sleep.
Better for him to have a good appetite and rest then refuse to eat and be paranoid and restless.
Sunday 5/20/18 - Up at 6:00 AM - 5th Day of Constant Care
No nurse Sunday night as they were short handed having 7 other CC cases that were more serious.
Nurse left at 8 pm and Jim was fine, gave him his lorazepam at 9 pm and it is supposed to last 6 hours.
I put on an amazon sci-fi movie and he was up on and off from about 11 pm onward.
Awake at 2:30 and had to get up and pee and that was a struggle getting him to stand up by the bed, I have to pull down
his depends and get him to go in the urinal as he tends to fall backwards onto the bed so have to hold him up and
hold the urinal at the same time. He can't pee laying down of course.
He has a form of Dementia called Lewy Body Dementia which I described in an earlier post which causes him to have trouble
standing up, walking and bending his knees. So it is like taking care of a very large toddler.
He was also trying to get in and out of the bed because he keeps hearing his cat outside meowing
and it wakes him up. I wish his sister could take that cat and have it put to sleep because it is old and has kidney
problems which is the reason it is kept outside or it would pee in the house. He would not let me take it
to have it put to sleep a month ago when he was more cognizant. The problem is everytime he wakes up he wants
to look for his cats so if that cat is gone he might go crazy trying to find it. I have to keep reassuring him
that the cats are all fed and taken care of because he is so concerned about that every time he wakes up.
His cat Mandy even sleeps in the hospital bed with him when she can figure out a way to get in it.
Monday 5/21/18 - Up at 6:30 AM - 5th Day of Constant Care
I had to give him his Lorazepam at 3 am so had to set the alarm to do that but I never really got
much sleep until 3 am so by 6:30 am when I woke up I was really dragging.
I fed the animals and got his shake ready but let him sleep. He woke up at 8 am and right as the day nurse was
knocking on the door he wanted to get out of bed and pee...so I had to leave him on the bed and let her in.
I told her he was just getting up to pee so as soon as she got in the door she had to help me get him to stand
up and pee in the hand held urinal again. Then he insisted on going to the bathroom so we walked him in there and
he again gave us a hard time trying to get him to sit down because he is afraid to bend his knees. She had to
put her hands under his knees to get him to sit on the toilet. Then he wanted to get back up again so she told me to
get the relaxant gel. I put my gloves on and rubbed the gel onto his back and changed his Patch after that.
He never could go to the bathroom so we put his (APU's) back on and walked him back to the bed and got him into
bed which is quite an undertaking as he needs to have his legs lifted up onto the bed and upper body pulled up
onto it. He can no longer scoot himself up onto the bed - we have to do all the moving. So glad I got the hospital bed
as it really helps with head and leg elevation...but doesn't help much with scooting him up as he tends to slide down it.
I put a thick non-slip waterproof mattress pad under him and we sometimes use that to lift him with but it takes 2 people do to that.
Last night the neighbors dropped of a pack of Chocolate Ensure shakes which I am using today. The hospice nurse only
gets supplies on Tuesdays and you have to ask for what you need a week in advance so I was out of the shakes.
I made the mistake of ordering apple juice instead which I will never do again as it gives him the runs - live and learn
I poured his Chocolate Ensure shake into his sippy cup and he drank 2 of those right away
and I fed him a breakfast sandwich and carrot cake.
He finally went to sleep after that and the head nurse showed up to talk to the day nurse.
We discussed changing his Lorazepam schedule to every 4 hours so starting at 3 pm he will be on that new schedule
or we may even start it sooner.
It seems to me his Lorazepam is wearing off much sooner than 6 hours. They said he is building up a resistance to it
so I may have to start giving him liquid morphine with it each time.
I was told to start at 11 pm to give him his Lorazepam, Methadone and liquid morphine all together in the hopes
he will sleep until 6 am so I can get some rest tonight.
I will be taking a nap later today. I'm so glad I have the same day nurse here that knows all about dementia and cancer
because she went thru the same thing a few months ago with her own husband. So I will rest easy knowing she knows what
to do. It has taken me some time to not feel guilty about giving him more medication to keep him calm but
we discussed dementia and there really is nothing else you can do. You have to stay on top of things or
they can turn on you in a second and become out of control like he did on Monday and Tuesday last week.
To top off all that excitement by 2003 Durango is stuck in park so I had to have Ron drive me to Walmart to
pickup my groceries this morning. I looked online and found it is a common problem that I am hoping I can fix
with WD40 and moving the steering wheel back and forth or unhooking the brake lights. You Tube has all kinds
of suggestions for things I can try before I call Triple A. Since it is stuck in park facing the house it has to get unstuck
in order to be towed. No it's not the tranny or oil - all that is fine - it's just a problem common
to that type of SUV.
Even though I advertised the futon for free that I put out front on craigslist, offerup and letgo no one that inquired
had come to pick it up - I am guessing because of the pouring rain so
I called Wastepro today and someone had already called Code Enforcement who called Waste Pro on Saturday
so it will be picked up on Thursday.
I am so sorry it was sitting out there so long as I thought it would go fast and may have if not for the rain.
Noon already and I am sooo wiped out - I've really got to make myself take a nap...whoops spoke too soon - Jim I could hear
was back up again and about
and the nurse and I helped him walk into the LR with the walker. He sits down and drinks his powerade then
we need to rush him back to the bathroom to pee but too late - Thank you APU (Adult Protective Underwear).
Finally got him back into the bedroom, changed the sheets and he is sitting in his lazyboy.
2 pm and he is watching antique car stuff on the History channel. He seems happy to watch it and is not interested
in eating anything when given choices about what I can make him for lunch.
3 pm time for his meds then late lunch early dinner. I gave him his meds at 2:50 and brought in alfredo noodles w.chicken
and he would eat a few bites and then say I had to
get on the other side of him and then give him a few bites and he would try to get up out of his lazyboy. He was restless
and the nurse had to tell him to sit down while I was feeding him a spoonful at a time. He would refuse to eat then I would
wait a while and try again until finally she said I had to give him liquid morphine. So he took that from a syringe that
I squirt into his mouth. Then I was able to give him a few more bites and he said no more and didn't want water either.
So I got up put on one glove and rubbed the relaxant creme on his upper arm while I tried to get him to pay attention
to the plate in front of him. He still refused to eat but now after having all those meds he was finally ready to lay down.
We got him up off the lazy boy and into bed and he is watching TV and sort of sleeping. As I was going down the hallway
out of his earshot she said he will need the liquid morphine every time I give him his lorazepam every 4 hours and I agreed.
I didn't expect he would be like this so soon. So in 4 hours at 7 pm more meds and maybe a dessert of some kind.
He didn't eat much this time. This is his 3rd day Patch that we put on this morning so his restlessness could be the
Fentanyl Patch wearing off.
She also said she will talk to the head nurse about changing him to Haldol because he has built up a resistance to the
Lorazepam so we may start him on that. Will have to wait to hear back. I have to get approval and instructions
for any increases in meds or changes so they can know how much to order.
I ate the leftover lunch in the dining room so I could take a break and write since things are happening faster now so I
won't forget. These last few days that the nurses were here it was hard to take the time to write.
The only break I get is after he gets his meds and eats and then in 4 hours he may be up again and who knows how he will
be then. Is this the end of a long journey or just the beginning of a new more difficult one.
4 pm Dr.B drops by as I'm sure he heard about Jim being difficult. Jim looks fine laying there now in his hospital
bed with the gates up and lots of drugs in him...amazingly he is wide awake and still watching TV and shakes the Drs hand.
You would think after all those drugs he would of passed out by now. The Dr. asked if he had ever ad Quietapin
and I said no but it sounds like what he needs. He is going to order it. Jim heard every word we said about him laying
right there. We are not sure if I will be getting a relief nurse tonight or not.
I am so glad I have a nurse here helping out because if I
didn't I would be even more stressed out and tired than I already am.
8 pm new night RN showed up and re-evaluated Jims meds and checked his respiration over night and recommended some
slight changes to the Case Manager the next morning.
Tuesday 5/22/18 - Up at 6:30 AM - 6th Day of Constant Care
Finally got a good nights sleep, even though I woke up at 3 am when I heard them moving around in the bedroom
I went back to sleep after things quieted down. I sleep on the couch just on the other side of the bedroom
wall and am a light sleeper. I like to be nearby in case they need help.
No nurse showed up at 8 am as they are short handed and had ordered an agency nurse but none showed up.
The Case Manager showed up at 8:15 and discussed the med changes with the night RN and I had already
written down the changes. Since Jim had not woken up yet I told them to please be quiet and leave
so he could sleep till 9 am. I woke him a little at 9 am to give him his meds but he went back to sleep so
am waiting for him to wake to give him breakfast. I didn't want the confusion of shift change at 8 am
and him getting up to pee to happen at the same time like it did yesterday.
The important thing was getting his meds in him on time or at least as close to on time as possible.
I am trying to put 6 hours in between his Lorazepam during the day so he can eat then after 3 pm go
on the every 4 hour schedule. We are keeping his Methadone at every 8 hours.
An Admissions nurse showed up at 10:10 am and I went over his most recent schedule with her
but she doesn't know how long she can stay. The night RN tweeked his liquid morphine to a lesser amount due to his
but I told her I only give it as needed like when he is agitated or is being difficult about taking his meds.
CNA showed up at 11 am and Admissions nurse explained things then left. Jim still would not wake up to eat
breakfast so I decided to let him sleep. I think that Liquid Morphine every 2 hours last night is why he is sleeping so late.
So I went into the LR to work on my computer and told the CNA to let me know when he wakes up.
At least I got his most important meds in him at 9 am.
Around 1 pm his pulse was down to 51 and oxygen 86 according to my oximeter
so I put the oxygen on him and it went back up and let him continue to sleep.
Waited till 2:30 pm and woke Jim up to give him his Lorazepam and Methadone and had difficulty w.that even though I
was a half hour ahead of schedule...I had him drink some chocolate shake to wake him up a bit...but then
when I tried to give him his Lorazepam he wouldn't take it.
So I had to put the Lorazepam in a syringe mixed with powerade and was able to
squirt that into his mouth. Luckily he took his Methadone pill ok with powerade.
Then I brought in his freshly heated breakfast sandwich but he refused it and was trying to get out of bed.
The CNA lowered the bed and Jim was not able to stand up and he had already soaked his ADU's. (Adult Protective Underwear)
Since he was not able to get up and no longer needed to pee we had him lay back down and raised the bed back up and the
CNA showed me how to change his underwear while he was laying down while on the bed. This is not something I have
ever done before and we had to use the other underwear with the pull tabs that I had bought previously.
I still have to learn how to use the pullups under them.
After he was done being changed and we pulled him up further up on the bed I tried to see if he wanted anymore shake or
food and he refused. So now I am at the point where he is Totally Bed Bound. He cannot get out of bed and must
be changed in bed. This is now the beginning of a new chapter in my learning experience about how to
take care of Jim now that he is bed bound and I don't feel this is something I can handle by myself.
I hope that they will continue Constant Care for him as I really need help. The CNA that is here will be staying until 8pm
and then I am hoping a new one will show up because I don't think I can handle this on my own since his condition
has changed. I was hoping to get him to the toilet for a BM since it has been since Saturday that he had one.
Since that may not happen the next thing will be hoping he goes firmly in his fresh new ADU's.
Also need to put a disposable pad under him even though I have a reuseable waterproof washable bed pad under him.
He also refused to take his Lactolose so that is the next hurdle.
4:46 pm while sleeping: Pulse 55, Oxygen 94, 7 pm 92/60 pulse 60, Took his 1st lactulose finally at 7pm.
Night RN showed up early at 7 pm...same one as last night which I was happy about as he already knows what is going on...
much better to have the same nurses so less explaining for me to do.
Jim is not eating at all and barely drinking fluids now and we have to be careful when giving him meds that he is able to
Will probably be giving him his next meds as fluid in a syringe from now on.
The RN explained that he may not be able to swallow at some point so the fluid will just slowly go down his throat
and that we won't be using much liquid. His body is very stiff and he is being turned to each side every 2 hours
with a pillow under his calves. He can nod a little when you ask him a question but can't speak.
Although I had already read about the end of life signs the RN explained to me all the different things
we will be looking out for such as skin mottling, purple skin, breathing noises, less urine, dark urine,
heart rate may go up or down and become irregular, his breathing is already 2 deep breaths and then a 30 second pause.
I am sitting here on the bed now but will be sleeping on the couch in the LR later, the RN is at the office table
next to the window. He cleaned Jims teeth with some mint dental brushes. Almost 10 pm so am going to bed soon.
Wednesday 5/23/18 - Up at 6:00 AM - 7th Day of Constant Care
The night RN was really great and he had just taken care of Jim the previous night so he was quite familiar with the case.
While I was sleeping he gave him a bed bath, washed his hair, shaved him and cleaned his teeth.
He got his usual meds at 7 am Lorazepam and Methadone and Lactulose for constipation. All pills are now
crushed and mixed w.powerade and given to him with a syringe into the side of his mouth a little at a time.
He only had a few sips of powerade to drink. Didn't want to eat anything so he has not eaten in 2 days now.
Jim was actually awake when I walked into the bedroom at 6:30am and the night RN went over his meds w. me so I could
take notes and start his Wednesday schedule. He told me what to order from the Case Manager, more dental swabs,
a different kind of diaper and some ointment for a sore he has on his tailbone.
I texted the case manager this order and she brought just about everything this morning when she showed up at
8:30 am. We all discussed that he was in the ends stages. I told them I was crying yesterday morning but I ate
something and took my zoloft and felt better. Sometimes I take my zoloft too late and that and being tired and not
eating tends to make me an emotional basketcase.
The same day CNA I had for many days showed up after only having 1 day off...so it's nice to have someone
here during the day already familiar with the case. He was sleeping so I mowed the lawn and when I came back in
we changed his diaper and lifted him up towards the head of the bed and shifted him to the other side to keep him
off his tail bone. We put ointment on that sore but she is going to tell the case manager it needs to be bandaged now
because it has opened up. I think it is time for his sister to visit again so I will be calling her today
since she has not been here since Thursday 5/17/18. I think she will be very upset to see how he is now after only a week
since she saw him last. The last time I got a few bites of food in him was the afternoon of Monday 5/21/18
and he drank only 1 protein shake the next day 5/22/18 but that was all. He has not eaten or drank anymore nutrition since.
He refuses food and fluids when offered.
2:30 pm he soaked his diaper again so it had to be changed again -
I was surprised at how much was there considering how little
he drank but the nurse said you would be surprised how much fluid the body eliminates at first.
Gradually there will be very little urine and maybe not even a Bowel movement even though he has been taking
the lactulose regularly.
3:00 pm gave Jim his Methadone pill mixed w.powerade in a syringe that you squirt down into the side of his mouth.
He drank some powerade thru a straw after that but because his ability to swallow is hampered by his brain
not knowing how to
tell his body how to swallow properly he could possibly let it go into his lungs. If he gets fluid in his lungs
- he is unable to cough it out to get it out of his lungs so he could develop what is called
No matter how careful we are he could end up getting that anyways because the patient can get it from inhaling
his own mouths secretions into his lungs. If they inhale food or liquids into their lungs it can cause
infection. This is why Jim can no longer eat - his ability to swallow is now impaired.
His sister asked me why they could not give him IV nutrition, well he signed an order saying he did not want to be
kept alive by artificial means. He also has said many times in the past he does not want IV Nutrition or a tube going
into his stomach.
You see the stomach contents at this point in his illness can also be regurgitated and also end up in the lungs
The nurse said IV nutrition would have to be administered in a hospital and he does not want to go
to go to a hospital. Hospice is "End of Life Care" only and is meant to make you as comfortable and pain free as possible
but is not for extending life. If you want to extend your life - no matter how limited it may be - you would
have to go to a hospital and get off of hospice care. I recall Ron saying and I quote -
"that if I can't wipe my own ass, I do not want to be kept alive".
You have to ask yourself:
If you are laying in bed and cannot move, cannot eat, can barely talk, can barely swallow, can barely drink fluids without
letting them go into your lungs,
wear diapers that have to be changed regularly
and rolled from side to side to keep from getting bed soars, with absolutely no chance of things improving
- are you truly living?
The hospice delivered additional liquid morphine in preparation for when it has to be given every 2 hours
at some point in the future along with his other medications. The case manager did not want to be left trying to
get enough set aside as recently a patient needed it and it was difficult to get on short notice.
So better to have too much than not enough as you certainly don't want to leave people in pain awaiting their meds.
So far I am quite happy with the amount of care that Jim has been given by the hospice team and he smiles
at them regularly so I feel he is as happy as can be expected and comfortable too.
8 pm Sundown Syndrome: Right after the new male LPN got here Jim started acting up even though I had just given
him his Lorazepam at 6 pm. He was trying to jump out of bed and told us both to leave and was yelling
at us and fighting against both of us trying to keep him in the bed.
So the LPN put some relaxant gel on him and instructed me to put some gloves on
and do the same. The gel takes time to work so Jim was still struggling to get out of the bed
and was saying we were trying to kill him...
he was full blown out of control. The LPN put pillows around him and I had to mix a new dose of Lorazepam
for him even after we had given him a whole 1 ml of Liquid morphine.
We watched TV and waited for the meds to kick in but the whole time Jim was trying to get out of bed
but luckily was slowly getting too tired to do much.
10:18 pm the LPN had to call the office to find out what else to do....so he is going to try the
Quuatepine next which I have not tried yet. The problem is Jim is refusing to take meds so getting them in him is difficult.
He is surrounded by pillows in his hospital bed but trying to get out of the bed. The LPN put the head of the bed downward
and foot part upward to keep him in the bed. He did drink a little powerade which may have helped as
he is probably dehydrated. Giving him oxygen just made him more irritated.
The LPN got new orders to give him Lorazepam 2 mg every 2 hours and 1 ML Liquid Morphine every 2 hours
so we are going to stick with that plan for now.
I wish his previous RN from last night was here but the poor guy needed a few days off.
Jim finally fell asleep by 11 pm after the LPN gave him a chocolate shake and I went to bed.
Thursday 5/24/18 - Up at 6:00 AM - 8th Day of Constant Care
Jim was awake when I walked into the bedroom at 6:30 am and I said good morning.
He had just been given his Lorazepam and liquid morphine at 6 am so fell asleep
until the day CNA showed up at 8 am. Then I gave him his methadone and quietapin at 8 am.
He has been sleeping all day and only woke up when the nurse gave him a bed bath and shave at 11 am
and a new foam pad bandage was put on the open sore on his tail bone.
He sleeps with his mouth open so the nurse has to clean out the secretions that build up in the back of his mouth
After that he didn't wake up even when his sister came to visit at 2 pm.
The day nurse has been turning him every 2 hours and a different case manager came by to pickup reports.
The Dr.B also came by to check on Jim because of the report filed this morning by the night nurse
about his behavior last night. THe same night nurse will be here at 8 pm so we shall see how Jim
reacts to him soon. I plan on telling this night nurse not to be as chatty because I want it to be kept quieter
tonight to keep him calm. Even when I am not in the room this night nurse tends to talk alot to
Jim and he is not used to that much talking so I think it may agitate him. His meds have been increased today
so he should be pretty calm tonight - we shall see.
the night LPN thankfully wore a white tshirt when he arrived last night and Jim did not wake up at all
when he was turned and given his meds at 10 pm. So that was a releif that he was not upset by the nurse change
so I went to sleep. The day nurse agreed to go talk out in the livingroom with the night nurse when he arrived
so the sound of them talking would not wake him up. The night nurse also agreed not to be so chatty with Jim
so he would sleep better. He watched Netflix on his laptop and turned down the tv.
Friday 5/25/18 - Up at 6:00 AM - 9th Day of Constant Care
6 am: The night nurse cleaned out Jims mouth then gave him his 6 am meds.
He woke up at 6:30 as usual so I was able to say good morning and he gave me many kisses and I was able to
spend some awake time with him. He drank some chocolate shake this morning then went back to sleep.
When the day nurse arrived she said there was still no coverage on this case because all their nurses are at
facilities working overtime so the only way I am able to get coverage is if a nurse volunteers to be available.
So tonight I will have the same night nurse. The day nurse is able to work today but I may not have any
coverage in the morning. Jim seems more stable with his new medication Quietapine so I may be by myself Saturday
morning. It is harder to get nurse coverage on a holiday weekend...that is understandable because that is when
family members have time off and want to get together for the Memorial Day weekend.
It is supposed to rain all weekend because we have a tropical storm on the way so I'm glad I got
all my yardwork done ahead of time. Today will be very hot and humid as the storm comes up from the south.
The storm started in the yucatan and is headed up towards the gulf and may hit Louisiana but Florida will
also get lots of rain from it. I don't mind the rain because it fills up the lake and makes it so there is less
grass to mow along the lakefront. I already mowed along the shoreline so the water would cover the grass better.
If I am feeling more energetic I may mow even more along the water.
Doing yard work helps me keep my mind off things as I was feeling sad and weepy this morning
after spending time with Jim. Took my zoloft early today and may take some again this afternoon instead of waiting
till the evening. Jims sister may be coming by today to see if she can catch him awake and help to start his cars
and drive them around as they need it.
Luckily I was able to get the Durango to come out of Park yesterday morning
after spraying PB Blaster inside the steering column the day before and letting it sit. I also turned the wheels
all the way to the left and the right as I had read that helps too. I will definitely be keeping PB Blaster in that
car in case it happens again away from home...I ran out of WD40.
How long can a person live once they stop eating and drinking?
Once a person stops eating and drinking, death usually occurs within two weeks.
The person may continue to take small amounts of water to swallow pills or moisten the mouth,
and these small sips of fluids may prolong the journey towards death by a few days.
Get $10 when you sign up for Walmart Free Grocery Pickup thru this link, Shop Online for all the same products at
the same prices as in the store, then choose a pickup time and the app will let you know when your order is ready
by both email and text to your cellphone.
I usually add to my online grocery list all week and then setup a pickup time on a weekday when it's not so busy.
Follow the signs to the pickup area on the side of your local Walmart building.
How to Protect Your Family's Assets from Devastating Nursing Home Costs:
Written by an elder law attorney with over 25 years of experience, this book will help anyone with a family member faced with a long-term stay in a nursing home who wishes to preserve at least some of their assets by qualifying for the Medicaid program. You don't have to be broke to qualify! For the first time ever, the inside secrets of high-priced estate planning and elder law attorneys are revealed. Includes a summary of all income and asset rules for both married and single individuals, together with numerous examples and several case studies, which take the reader through the same thought processes that an experienced elder law attorney would go through when analyzing a real-life client's situation. The book includes tips on: how to title your home so you do not lose it to the state; how to make transfers to family members that won't disqualify you from Medicaid; how annuities make assets "disappear"; smart tricks for "spending down" your assets; what to change in your will to save thousands of dollars if your spouse ever needs nursing home care; avoiding the state's reimbursement claim following the nursing home resident's death; and much more. The 2018 Twelfth Edition has been revised and completely updated to incorporate all changes in the law as of January 1, 2018, and includes two chapters on Veterans' benefits.
The Whipple Warriors Motto is Never Ever Give Up: This is a tough fight as famous people with perhaps more access to better medical care still
did not survive long w.pancreatic cancer and
the survival odds are quite low, a 5% chance of living 5 years even after Whipple Surgery and Chemo,
as they were for people like Patrick Swayze, Steve Jobs, Michael Landon.
Famous people that died from pancreatic cancer
If you are a Whipple Warrior or someone researching about alternative cancer therapies and would like to ask Jim or me a question just fill out the contact form below
or you can ask publicly thru the Whipple Warrior Forum on facebook.
I can also provide you with a spreadsheet detailing every aspect of his daily diet regimen for fighting cancer.
The following foods are high in anti-oxidants and you should try to work these into your daily diet: Fruits: blueberries, raspberries, strawberries, red grapes, apples, pears, peaches, nectarines, oranges, grapefruit, avocadoes Vegetables: brussell sprouts, watercress, spinach, green beans, red beets, cabbage, celery, carrots, red tomatoes, bell peppers, onions, garlic Meats: Low fat - high protein is the key: Chicken or turkey w.no skin broiled, baked, grilled, trout, salmon, tilapia, mahi.
Red meats are ok as long as they are low fat and not very often Grains/Breads: Creme of wheat is easier on the stomach than oatmeal so for after surgery it may be more palatable. Best is Ezekial bread
made from sprouted grains, Rye Breads, Pita bread. Oils: Olive oil, smart balance w.flax seed oil, Olivia margarine made from olive oil. Coconut Oil for cooking and in cereal and shakes.
Try to stay away from dairy products such as cheese, milk and icecream... but 1 egg raw, boiled or scrambled is ok for protein.
Low fat Greek yogurt is ok.
Stay away from high starch foods like potatoes, rice, pastas and pizzas. Avoid eating breads, bagels, crackers, chips, candies, cookies, pies as cancer feeds on sugar.
Replace sugar with honey in your morning coffee and on your cereal.
Avoid high sugar cereals and just add some
Quaker Natural Granola Oats, Honey, Raisins and Almonds
and Fruit to your Oatmeal for flavor. I usually add raspberries and/or blueberries to my oatmeal...bananas are ok but higher in sugar.
If you run out of fresh fruit be sure to have canned peaches or frozen blueberries or raspberries as a backup. Plan your food shopping using this list and after awhile you will
eliminate all the bad stuff from your cupboards and fill them up with only the best and healthiest food choices.
I Am Jims Caregiver and need to stay healthy and keep a good frame of mind so I can take care of him, so I take very good care of my health by eating well
and exercising as much as I have time for
The links to the products I have listed on this page are actual products that I use myself. I researched Amazon for the best deals
before I bought anything so I could get the most product for my dollar. After you click thru a product link you can sign up to get a 30 day free trial
of Amazon Prime
which gives you free 2 day shipping on all these products. Well worth it - I signed up long ago and still use Amazon prime myself since I
order from Amazon alot...you can't beat free shipping plus I get choices of thousands of free movies and books.
Bad things I do - yup I do eat things that I know are bad for me like popcorn-but maybe if you do it the old fashioned way on top of the stove w.olive oil it is not as bad
as the microwave kind. I like beer and although I have heard it does flush out your kidneys it probably has no other health benefits...although
my favorite kind is Wild Blue blueberry so I call it health food beer. When I can't find that kind I do like the darker amber beers. I prefer tortillas over bread
but they are just as fattening. It's all a matter of only allowing yourself a certain number of corn or wheat calories and being willing to do the exercise it
takes to keep off the calories. You can read more about my exercise regimen on the bottom of this page
A1A Vitamins after reading the excerpt from my 77 year old friend Wally and what he does
to stay active and healthy.
If you would like to have me add a page with your list of supplements please fill out the contact form with
Whipple Warrior in the subject fieldfoxyform