My Battle with Merkel Cell Cancer

out. I do not have a definite date from my demise, and I have no assurances that should
my appeals be denied, I will have a painless and comfortable death.
I have in my possession the materials needed for my next blood draw for circulating
Merkel cells. By the end of next week, I hope to have the result. If the cell count has
risen, I expect that I will be undergoing chemotherapy designed to treat small cell
carcinoma. That will be preceded by some form of imaging study. If the cell count has not
risen, I can wait another month.
I have been feeling vaguely unwell. There's nothing that I can really put my finger on.
There are some minor abdominal cramps and lower chest pains. My appetite is not good.
This may be attributed to the lack of improvement in my sense of taste and continued dry
mouth. My weight has stabilized around 160 pounds, almost 20 pounds less than what
might average weight used to be prior to the diagnosis. Perhaps this is all psychological,
as a result of my not looking forward to any future treatments.
I have been thinking that this posterior mediastinal mass should be visible on plain chest
x-rays and I'm considering getting a plain chest x-ray for my own edification as to whether
this is true and then to be able to follow the size of the mass with a very simple test. Of
course this would not document any new masses involving lymph nodes in the upper
abdomen or in the mediastinum.
In my discussion with Dr. Ngheim regarding the planning of my experimental treatment,
there is one thing which he said that stuck in my mind. He stated that there are no longterm
survivors of Merkel cell carcinoma after chemotherapy. This is because the
chemotherapy destroys the immune system which is the major defense against the
spread of Merkel's. I think that his intention here was to dissuade me from having
chemotherapy and to convince me to have this treatment. Reading posts to the Merkel
cell message board, I see that there are several anecdotal cases of substantial survival of
patients who have had what I would consider to be more advanced Merkel cell cancer
than I think that I have. Because of this, if the disease is progressing, I will undergo the
chemotherapy.
It is my hope that with this plan, I will not be trading the last days that I have of relative
comfort for days of misery. Many patients are very sick following chemotherapy. I just
read a post documenting rapid demise from infection during chemotherapy. On the other
hand, when I was undergoing radiation treatment, I met a man who was having radiation
treatment in the morning and chemotherapy in the afternoon, and he did not complain of
significant symptoms.
In the meantime, I continue to work three afternoons a week. I plan to continue to play
bridge twice a week. I look forward to a visit from my brother, Dr Jon Shuster, who is a
professor of mathematical statistics at the University of Florida.
I'm also looking forward to a visit from my son Brian, who will be here just before
Valentine's Day. I'm hoping to be able to travel to Montréal to visit my mother, perhaps at
the end of March, depending on whether I will be allowed to travel assuming that I am
undergoing chemotherapy, or hopefully, not needing chemotherapy before then.
In keeping with prior posts, I'm going to conclude this blog with a satirical song that I
wrote many years ago, but I think that much of it is as true today as it was then.
MASTER OF THE HMO
To the tune of Master of the House From Les Miserables
Sung by the HMO President
Welcome, My friend Sit yourself down We are the best Provider in town As for the rest
They don’t compare They are obsessed With refusing care Seldom do you see Honest
men like me Working in the health Insurance industry
Master of the plan Ads are on TV We show those smiling doctors But what you don’t see
My Battle with Merkel Cell Cancer
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