Topic: Long overdue update
I've been remiss in not keeping up with the board here. I think of everyone here all the time and have been dealing with my own ups and downs of this disease.
I now have a blog which I'm using to keep friends and family more up to date with what is happening for me. If you're interested it is available at:
I have not been able to keep solid foods down for about 2 months now. What follows is my most recent post on this blog. A search on this site for Dr Jenkins will turn up a number of hits with more information.
love and courage to all
his is a long post. If you'd like the short version you can just read the first paragaph.
Dr Jenkins feels my recurrent disease is slowly progressing as it has been for a few years now. The difficulty eating is a result of this progression but any decision on surgery to relieve this symptom is entirely my choice. While there are no guarantees I have lived well with recurrent disease for years now and there is no reason to believe I should not be able to continue this for some time although the current symptom with food and liquid will get worse over an unspecified time.
My unpolished notes from today's visit:
Oct 1, 2008
Decisions are mine now.
Common sense and experience support that the blockage is the moss, spilled paint, tumor that Roger has suspected since at least 2006.
He reminded me that I was having some gastric distress since 2006. His notes from my visit then confirm this. He feels this is just the slow extension of this problem. He does not buy that the cancer has morphed to non-differentiated but that it is the same, slow growing, differentiated tumor moss that I have dealt with (WELL!) for years now.
He was careful with his words but felt that the Hitchcock docs were experimenting unnecessarily. He stated that the cholangiograms were unnecessary and unsupported. In his opinion there is no need for a cholangiogram unless the patient is badly jaundiced which I was not. I endured 3 of them.
He also stated flat out that he does not believe I have sorosis of the liver. I do have portal hypertension and this is what is driving the DHMC /Berk assumption of sorosis.
Nor does he feel that the end is near although we can never know. He does not believe any investigatory scopes are worth doing. His gut, experience, & observation of 100's of patients does not require additional invasion of my abdomen.
So surgery, and all process decisions, are in my hands. He worried that the docs at Hitch were pushing me unnecessarily toward a decision that may not be right and is only mine to make.
1. I have been living well with recurrent disease for a considerable time and there is no reason to believe I will not be able to for a good while longer. For the first time he related the story of a patient of his who is 15 years out. Never done chemo, recurrent disease for most of that time, 3 surgeries to remove uterus, bladder and something else but still some (restricted) but decent quality of life. I do not have to decide quickly unless I get to a point where I can't maintain the weight I'm at now or can't pass anything. He would then do immediate surgery. No prior tests or extra visits. Just call Julie (his assistant ) and she gets me admitted immediately.
2. Roger was not especially concerned about risks with by-pass surgery. It requires good surgical procedures, staying away from known trouble spots like my varicies and experience with the surgery being performed. He talked about staying focused and not making the one little mistake that can lead to another mistake etc. I liken this to the risk of winter or high altitude mountaineering. It isn't always a major event that causes tragedy but rather a small mistake that can lead to another in a situation where recovery from a mis-step is difficult if not impossible. Moral: Know and trust your fellow climbers and only venture out with those you do trust. Stay mindful and very present.
3. Recovery: A successful surgery would keep me in the hospital about a week and then there would be the recovery time at home. Could be up to a couple of months to get back to a strong and vigorous state. Also the stomach doesn't always just accept that there is a new pathway for food. Sometimes this takes a while.
I talked about not feeling prepared to make the decision. My quality of life is quite good most days now. Being able to eat and still have this quality of life would only be better. And in fact it could be much better as I could gain weight, strength and vigor.
On the other hand I don't want to give up what could be a couple of good months if my life expectancy is only a few more months. Roger repeated that only I can decide. I should take care not to allow myself to be pushed into something by the Docs who know less then I about how I feel and perhaps what is happening with me. There are no guarantees of course but, in his opinion, no reason to believe my life is close to the end either.
He also said that often we know when it is the right time. Like a woman having contractions knows it is time to give birth to her baby.
I expressed my reluctance to consider using chemo again and he supported this decision. He noted that I'd tried it, that it may well have helped me but that he would not encourage me to do it again now.
So it's up to me. Sure would be nice to eat pasta, sure do enjoy so many of my days right now.