Wednesday, February 18, 2009

Has it really been more than two months since I last posted an update to this thing? I must have been trying not to jinx myself... quietly going about my business through those four additional chemotherapy treatments. I haven't really wanted to talk about it, not wanting to dwell on the worst that could happen, hiding. It will go away won't it?
     No... it won't. I got the results from my newest tests last week. I have what they call primary refractory Hodgkin's lymphoma. After initially responding to treatment my cancer has become resistant to chemotherapy- the last four treatments did nothing. This is a really bad thing. It is worse than a recurrence of cancer later in life.
     Statistically, with standard treatment, the outcome is "dismal", to quote a medical journal. Statistically, I would die within the next two years. So, I will likely receive a less standard treatment- a "peripheral autologous stem cell transplant" after receiving extremely high dose, very toxic chemotherapy. My bone marrow and my immune system will be destroyed to try to kill the cancer. The stem cells harvested before these treatments will be reintroduced to bring my marrow back to life. It will take years for my immune system to regain strength. Many people die from subsequent infections the first year. The success rate for achieving remission for two years is somewhere between 10 and 50 %. For five years the odds go down, longer than that the odds plummet. This treatment will put me in the hospital from 4 to 8 weeks and it will make me very sick. The chances of getting secondary diseases from the high dose chemotherapy is also very high.
     Long term survival is relatively uncommon, and much of that borrowed time must be miserable. I can't help but wonder if it is worth it? It seems we allocate far too much time and too many resources extending life with out worrying about how that life is lived... quantity versus quality. I always thought that I would not want to waste the resources if my life became dependent on technology and pharmaceuticals, but then I always thought I was a robust, healthy guy.
     When will this happen? I don't know. I'm in no hurry to find out. My doctor has to consult with many people. I have to go through more tests. Honestly, I will stall for as long as my doctors say I can with out adversely effecting the outcome... It's spring!
    The other day I was looking out of the train through a window smeared with hair grease at dusk. The post sunset sky shown like mother of pearl layered behind the silhouette of San Francisco across the bay. I saw the nearby gray, rain washed houses, steeples and streets of west Oakland and couldn't shake the thought that I would not be around long enough to see these things change over time.
     I really don't want to die.

1 comment:

dstbridg said...

scott. I came across your blog while i was searching for oyu on the internet. i am so sorry to hear of your lymphoma. i know you must be going through the wringer right now, and my thoughts are with you. i wish i could meet up with you over a cup of coffee or a cocktail to catch up, as it has been so long. i was lookin gfor you b/c i found a cassette you made me 20 years ago and it reminded me of all the fun we used to have, reeling and rocking around town! made me miss you, that's for sure.

oh, scott, hang in there! i will be sending all the good energy i can muster your way to help you fight the cancer. please know you're in my thoughts and i miss you.
deanna st.aubin-bridgwood