I am of at least three minds about this next step. The first is relieved to have a date at one of the two best places in the country to go for this evaluation; the other one being the Mayo Clinic. A few nights ago at dinner the boys and I were joking about the amyloid, it is, after all, such a strange word (originally misunderstood chemically to be a "starch," not a protein, and hence its misbegotten etymology), and so I took my cue and said, "I have been thinking about going someplace to understand more about this thing. I could go to Minnesota or Boston, what do you think?" "Go to Boston," Sam said assuredly. And so there it is, the boys know that I am going there. [I have also just learned that Stanford has a Center too.]
BU is highly recommended by my cousin Elizabeth, and by reports from Karen Hanson in Rochester, whose husband sadly passed away last year from the disorder, but not before he received expert care from the Center in the form of chemotherapy and a bone marrow transplant. In fact, at least for the time, the treatments "cured" the amyloidosis, but very unfortunately, and as is the case for so many people, he was already suffering from severe organ failure at the time of his diagnosis. I can only hope that however annoying the manifestation of this amyloid is on my trigeminal nerve it is nonetheless infinitely better in terms of a prognosis than if the first time I learned about it was as the result of a heart attack or kidney failure.
The second is intellectually curious. I cannot help but be fascinated by the scientific medicine of this disorder. It is chemistry at the base, and I loved chemistry so much in high school I ran ahead of the class and took the Regents examine in January instead of June. And of course biology, because there is something about the plasma cell production that must get out of whack. Without additional evidence I can only reflect on how our bodies begin to break down at some point, not unlike even the most well-tended machine. We are a bundle of moving parts, and it is not a wonder that at some point little anomalies occur. And medicine. If, in fact, through treatment doctors can actually correct the plasma cell production, how fascinating is that! Like with the surgery, where before it I became intensely interested in the physics of the surgical approaches to the lower brain and then in the immediate aftermath not so enamoured during recuperation, I may lose some of my intellectual interest during treatment, but it is as good a diversion as any in these days leading up to the evaluation.
The third is hopeful. Through the abdomen biopsy and whatever other tests I will have in Boston I will learn more about whether or how much the lambda light chain proteins, "chains" as I hear doctors call them, have penetrated other tissue in my body. I expect to leave with a treatment plan, which, according to everything I have read and at least one other doctor with whom I spoke, will very likely include chemotherapy. The outstanding question is whether treatment jumps to a bone marrow transplant with this disorder, unlike cancer where more frequently rounds of chemotherapy are exhausted before turning to bone marrow replacement as a last result. On the one hand, I can already imagine an argument for jumping if the idea is to reset the bone marrow plasma cell production correctly. On the other hand, bone marrow transplant, in this case autologous, is still, while taking into account improvements over the years, a major and risky procedure not least because of the utter defenseless state of the immune system in the interim. Hope, again, jumps to mind, because apart from having a fatal disease I am otherwise healthy. (Compliments to Denise's mother, who beat ten years of lymphoma after four rounds of chemotherapy with a bone marrow transplant at the age of 67 ... that line is a paraphrase of one a doctor said to her at the time of her treatments.) I had an EKG before the surgery and no one mentioned any concern. I also had subsequent to the surgery a lovely 24 hour urine test which at least had normal creatine levels. Maybe, just maybe, there is not serious tissues damage apart from on my nerve.
I have more stories to tell, but I wanted to at least make this information available. What I do not have the time to say in sufficient depth at the moment is how overwhelmed I am at the extraordinary kindness of so many people as this story has dragged on from weird symptoms to surgery to medical attention. That story constitute its own thoughtful post. Second, I do want to share my experience about the pain management, especially since two weeks ago I could not even get out of bed very well and since then I have been not only back to work but doing full days and loving every minute of it! And finally, I want to explore what is a pedestrian banality in the literature of medical disease, how one's perspective on the world changes ... that is, it is pedestrian and banal until one actually experiences it.
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