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 6/02/17: CT Scan Tumor 4.7 X 2.4 6/15/17: Miami - No nanoknife-tumor too large & undefined
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 40 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. 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 beleive
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 beleive 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 beleive 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 beleive 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 neice 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 beleive 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 beleives 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.
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