I consented to the clinical trial. The decision gave me buyer’s remorse. The worry was whether the increased chemo would burn a hole in my gut. As it is, I won’t receive the mega dose; I was randomized to the standard high dose. The study hopes to define a new maximum tolerated dosage of chemo. So, maybe I’ve drawn the better of the two options.
Treatment begins Monday. The first day I receive Amifostine. This drug protects against damage to the GI tract membranes. Since it is part of the study, its efficacy is still in the wannabe stage. And, like most drugs, it comes with its own problems. The second day I receive more Amifostine along with the cancer-killing drug, Melphalan. The Melphalan destroys my bone marrow. The third day I rest. On the fourth day I receive my stem cells.
Our consult on Thursday with the team doctor and nurse emphasized the realities of MM. The message was clear: transplants for multiple myeloma do not cure the disease. They buy time. Soon, I’m going to have to start taking this crap seriously.
Is my cancer eventually going to get me? Probably. I’m hosting a stubborn malignancy; it habitually returns. The important question, however, is not if, but when. Searching Google with the query “life expectancy with multiple myeloma,” finds an array of credible websites. They all agree, MM is an incurable blood disease. Life expectancy averages, at the high end, five years from diagnosis. Since I found out nine months ago, this suggests I’ve spent 15% of my remaining time taking nasty meds and blabbing about what all this means…as if I knew.
Stephen Jay Gould, the late evolutionary biologist, wrote a wonderful essay called, The Median Isn’t The Message. From that I’ve learned to not infer so much from statistics about cancer survivorship. The forecasts about patients with MM deserve a closer look. The assumptions of the five-year prognosis don’t allow for individual variables. That statistic applies to the multiple myeloma population as a whole. But it is an abstraction. I am not an idea.
To begin with, that number computes the midpoint of survivorship. In other words, when diagnosed, half the folks with MM will live less than five years and the other half will live longer…perhaps a lot longer. Am I confident I belong in the latter group? Sure, and I can think of three empirical reasons, not to mention a couple of intangibles like luck and attitude.
First of all, I’ve got health insurance. I can afford good care. Secondly, my cancer has not advanced. Complications associated with later stage myeloma skew the results downward. I am free of those problems. Finally, MM presents itself in variations identified by chromosomal abnormalities. Some of these progress rapidly. Thus far, my blood provides no evidence of aggressive myeloma.
I am knocking on wood as I write. The reality that all cancers, and their treatments, defy absolute predictability makes me superstitious. Luck is the X-factor in this equation. It’s part of the deal, the chaos along with the order, the ultimate variable. That’s OK with me.
Actually, I’d expect a good result even if no reason existed. I root for the underdog. I believe emotions can shift the momentum. I’m buying a mattress with a 20-year guarantee. I plan on being a survivor.
Good Blood, Bad Blood 