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Hi all, Here is my update. I will get to my physical and emotional
report in a moment, but first my decision and why I made it. I have decided not
to pursue a clinical trial in Texas or anywhere. The trials I was looking at
dealt with the immunotherapy drug ipilimumab. After inquiries and research I
have been unable to find any data that convinces me that I should put myself
and my family and friends through an extended program. I could find no data
that showed that I would have a recovery chance (or extension of life chance)
from it. I also found that one of the side effects is difficult stomach issues.
My stomach has hurt for the past three months; I won’t add to the discomfort.
When I checked with the program at MD Anderson in Houston about the results
that they are seeing, I was told that they did not have any data that they
could share with me. I also checked for relevant programs at the U of
Minnesota, at Mayo in Rochester, and a neat one at the Koch Center in
Pittsburgh (they have an effective treatment for reducing tumors in the
peritoneal cavity, for a number of cancers but not prostate. That phone call
took less than five minutes.) And so, the Hail Mary is over. I guess
am not Aaron Rodgers. No PSA to report this time. The Doctors are
finished collecting that data.
So on to what is a wonderful quality of life for me right now. Yes
my stomach often hurts, I feel like I have to poop any minute now, and my legs
are weak some days. Part of the stomach issue is the ascites that has to be
drained out of me every so often (a process called paracentesis in case you
ever need it for a crossword). But wth some very fine advice from several
doctors and our dietician daughter-in-law and the care from Mary, I am eating
better and enjoying it more. I have good days and bad. I get my walks in
as much as I can. I have had two exhibits of my photos. One just closed and the
other is up into the middle of March. I have received visits and mail that are
humbling and joyful. I haven’t responded to all of them but they touch me
profoundly. You guys are great. I have continued to work on spirituality and am
glad for the time I have to let my thinking develop. It keeps revealing itself
and that is so fun. I have done a good deal of reading and also a lot of review
of my own emotional experiences. I have a not-very-finished piece on
spirituality if you would like to read it.
The oncologist told me I had 1-2 months. Well, I got one down and
hope that I can celebrate a few more first days of the month.
I will keep you informed as this progresses. I tried telling the
cancer to go away but that didn’t work. I am not worried and I am not afraid.
Actually I feel at peace. I couldn’t do this without you. You mean so much to
me. I love you so.
Hug the ones you love,
Dan
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