I have chosen to play my cancer card in the transparency of
an Internet blog – accessible to anyone in the world. Was this a good decision
for me or not?
There are days that this decision has cost me unnecessary
stress, when desperate people believe that I can cure their loved one because I
happen to have a blog on leukemia. When I explain to them that I am a cancer
patient in a clinical trial, trying to share my experience with others, so that
other patients can become more informed about the decisions in their life, it
does not always matter. When I explain to them that YES, I have a doctoral
degree – a Ph.D., not an M.D. -- so I can help with cerebral research matters,
not medical matters, it does not seem to matter to them. My heart goes out to
them.
This, however, is a good day. I am dedicating today as a
celebration day for my blood brother Dr. Matt, who is also 17p deleted – the
poor prognosis guys and gals. After one year on ibrutinib, his white blood
count remains in the normal range, and his bone marrow biopsy shows no evidence
of cancer. The flow cytometry blood test indicates that leukemic-type cells in
the blood stream have gone from 100% to 2.4%. So he is as close to remission as
he can be. He is “happier than a pig in slop” (his words). LOL. I celebrate his
life!
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