molly_may
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Melinda,
Wow, you have a great story, one of the miracles that give the rest of us hope.
I hope you enjoy the book.
MollyWow! This is great. It sounds stupid, but I really do believe in the power of “hope”, and messages like this really raise the bar. Somehow hope fuels a refusal to give up, even when your brain knows the harsher realities. Hope tells you a race is won one step at a time.
My favorite book right now is “Blind Your Ponies”, by Stanley Gordon West. Its about the town of Willow Creek, MT, who’s high school basketball team hasn’t won a game in 5 YEARS, yet they play every game like there was a chance, even though they many be down 50pts with one minute to go, they played just as hard, like they actually had a chance to win. The author seeks to answer the question of “Why do they carry on in the face of utter and certain defeat?”
In the book, the author talks about true heroism as “refusing to quit when there was no chance to win” and “giving your all in the face of absolute defeat”.
It is a book of hope, and not giving up, because miracles do happen.
Determination is an amazing thing.
First, Catherine, my thoughts and prayers are with you and your mom. Think positive. It helps me to keep a mantra going in my brain “benign, benign, benign, benign, benign, benign”. Sometimes it works.
Thank you all, I really appreciate your insight and experience. Like most of us, I waffle between confidence and fear, and the what “should I, could I, would I” be doing. Seems something always pops like (like the cyst) to hijack the plan, and your input helps to refocus.
VTKB, thanks for the info on Dr. Sharpel. Unfortunately, the duodenum stent is permanent, and can only be removed via a Whipple like procedure. So even if I manage to beat the cancer, I’m still looking at this stent problem. After a few hours of moving, I get stomach and back aches, and need to sit or lay for a while. This has been since the day the stent was put in.
Melinda, thank you for the links on molecular testing, I will go through them and hopefully can come up a good argument to get my ONC to issue the order to get the test done. Mayo does have tissue samples from last September.
At the time of my meeting with that crazy surgeon (“Have you considered this could be the beginning of the end?” and ” Have you thought about how this is going to end?”), totally took me by surprise.. I was shocked and actually speechless. This was an older woman, with 27 years of experience. It will never happen again. I am now prepared, and if I ever find my self in this position again, I will look them in the eye, deliver a very nasty two word response, and get up and leave. I will not pay their bill, and will the tell my insurance company to do the same. There is NO EXCUSE for this behavior. For what its worth, I did report her.
Lastly, the U of M is suppose to have a top notch Gastroenterology department, but I was also forewarned that they have egos to match. I did consult with one surgeon, a Dr. Jenson, who was very different. Very personable, gave good answers to unlimited questions, offered to get additional info, and make additional referrals. Seemed very knowledgeable. A stark contrast to the other Drs I saw there.
Again, thank you all,
MollyMarions, Thank you for the very informative link. I have never heard of cachexia. Very interesting.
Positivity, I so hope you find something that helps. I do remember salty stuff seemed to go down the best, which may explain the cheese and bread (yes, I did that), and mac and cheese. I also drank a lot of apple juice with salt in it to cut the sweetness. I’ve been following this site for a long time. You are very good at this, you will find something.
Just to get a little more info out there….the feeding tube isn’t as bad as it sounds. I have a horse, a dog, cats, property. I shovel manure, lift hay bales, walk the dog, ride, mow, shop, clean, whatever during the day. About the only thing I can’t do is swim.
Once I connect in the evening, there is a battery pack, so I can go visit friends, or sit outside or whatever as long as I carry the battery and the formula bag. I go from 6pm to 6am, but you could do 8 to 8 or 9 to 9, whatever works best for your schedule. I get a “food” delivery, once a month.
It is a overnight hospital stay to get it, and after that they change it every 3 mths, but its done as an outpatient, and takes about 20 minutes.
It does make noise at night (a little “whirling” noise from the pump). I wore earplugs for a while, but now I’m used to it (and the cisplatin damaged my hearing some).
Do I wish I didn’t need this? Absolutely! But I really didn’t have a choice, and it has allowed me to regain weight, muscle mass, strength, and helps keep my energy level up. I still have fatigue from the chemo, but I think its more mental than physical (chemo brain). And I do believe it is helping to keep my body in much better shape to fight this fight.
I have been monitoring this site for quite some time, but have not done a “formal” introduction yet (but will soon), BUT, have you considered a feeding tube?
By “accident” (read “know it all” doctor who assumed I had “all this cancer in my stomach”- NOT!) while I was getting a metal bile duct stent put in, he also put a metal, non-removable stent in my duodenum, which created a blockage, where my stomach didn’t empty. I went from having no problems eating, to losing 15lbs in a little over 2 months (I only weighed 105 to start). I simply could not eat enough, and my ONC said 5 Ensures a day (Oh good, sugar and corn syrup), would at least keep my weight up, but even liquids couldn’t get through. I was on Cis/Gem chemo at the time and was spending 75% of my time in bed. When I hit 89 lbs, I knew I had to do something. I asked about a feeding tube. My brother is a Dr, and he said YES! My ONC, said NO! worse mistake ever (not sure why), anyway since getting it, I have gained back the weight, plus. It was the best thing I ever did, (even though it is kind of a pain), I get 1400 calories of GOOD nutrition everyday (Nestles “Compleat”, which is REAL food).
The key is to get a “jejunal” tube that bypasses the stomach and puts the food directly into the small intestine. This way you CAN still eat by mouth (I eat anywhere from 300-600 calories a day depending on nausea, or lack of appetite. The “feeding” takes place starting about 6:00pm and runs overnight. Less food = less time, and if your “motility” (speed of processing food) is better than mine, you can probably do it faster.
I am doing very well with my stage 4, extrahap CCA. It’s been a year, and my scans still don’t show any progression (still too small to show up??), BUT part of me thinks good nutrition has to be helping. How can you fight a cold, much less cancer, if you don’t eat well??
For me, its major surgery to remove that stent, basically a Whipple, so I don’t know that I will ever be able to eat normal again. BUT for the rest of you, a feeding tube could be a good way to fight this disease while maintaining your strength and energy. My insurance does cover it.
I have learned a lot about “motility” the past seven months. A lot of things slow down your digestive process, which effects your appetite. Ironically, the anti-nausea pills they give you? Are the WORST. Better to get your anti-nausea drugs by IV with your chemo, as that doesn’t effect motility. Contrast drugs given prior to CT scans will slow your motility. Mirolax or similar stimulants can help speed things up which will also increase your appetite.
I’m amazed that this is not something that is even mentioned by ONC’s, I first heard about it from a gastro dr, who gave me a quick course.
Anyway, this post is way too long, Good Luck to you.
