I've taken great pleasure in not posting a health update since November.
I've taken even greater pleasure in sharing my photos and miscellaneous thoughts instead.
Since my last post on the subject, I had been in the midst of a concerted effort to avoid my doctors. I'm sick of the constant blood tests, the nerve-racking wait for results, the consultations, the cycles of optimism and despair, dealing with the goddamn health insurance company.
And then last week I thought that too much time had passed without at least checking in with my endocrinologist. In the end, my fears almost always win out.
I had a blood test today to check my serum calcium level and other metabolic markers as part of monitoring and treatment of my parathyroid cancer. This has been going on for more than five years.
I should learn the results sometime Monday. But through a deal with my doctors, I'll be called only if there's a significant change in my calcium level. And most importantly, at my request they won't tell me the exact numbers revealed in the test, because I'm sick of dealing with numbers and their often abstract meanings. Numbers don't represent how one feels physically or mentally. They're only data over which to get stressed out.
Before the blood test, we had a frank discussion about my health situation. My endocrinologist, a wonderfully compassionate woman of whom I'm very fond, told me quite simply that she doesn't know of a surgeon anywhere who would choose to operate on me. Even though I had a scan in mid-November that revealed a small, vivid tumor glowing like a nova inside my chest, to where the cancer has spread from my neck, she said my track record after five major surgeries of having this tissue cut out completely is quite poor. The chances of success are now slim to none, the experts agree, and the surgery, at least at this point, is more of a shock to my system than the disease.
In the community of surgeons familiar with my case -- and there are many, here and abroad -- I am an untouchable. Surgeons exist to cut, and my case no longer affords them that opportunity.
So, she and I discussed treatment options. She believes it's time we travel down some uncharted roads because conventional therapies and medications go only so far. We talked about an experimental gene therapy developed in England for parathyroid cancer. This cancer is extremely rare, so it's no surprise that the pool of human guinea pigs in Britain is extremely small.
My doctor believes the physicians involved are amenable to shipping the materials to the U.S., where just one person in a nation of 300 million is now undergoing the therapy.
I would be the second person.
Nothing is known of its long-term success rate or its immediate and long-term side effects. My doctor isn't even sure exactly how it would be administered. This treatment is on the cutting edge of the cutting edge.
Even though this gene therapy was mentioned only as a possibility, I need to prepare myself for the choice between risking it and possibly helping others as well as myself, or sparing myself the fuss and accepting the reality (as it stands now) that this disease ultimately conquers.
If there were a large enough group of patients treated with this therapy from whom results and risks could be extrapolated, it wouldn't be so bad. But it's hard to draw conculsions from one, perhaps two people in the U.S. and a handful elsewhere, and the doctors won't even try.
I'm on a medication, experimental until last spring, that is losing its effectiveness (at least in my case) in keeping a hold, however tenuous, on my calcium level. This spike in calcium level is what makes parathyroid cancer fatal. At any rate, I'm happy and even a bit proud that I was part of the small group of patients upon whom this medication was tried out and declared safe.
There are other, conventional medications that can be used to the same effect, at least temporarily. But the route of most promise leads toward experimental treatments. If my time turns out to be limited, do I want to risk being debilitated and thus prevented from enjoying it by some treatment that may not work and may even make things worse? On the other hand, it could succeed ...
When in doubt, whistle.