Please Pass the Arsenic

In the eleven years I've been fighting multiple myeloma, having a long-term plan has let me live a relatively normal life. In the beginning, I didn't know what was important, so I studied all aspects of the disease. Back then this kind of study was quite difficult because the Internet was still young — the only way to get a journal article was to xerox it at a medical library.

But as time passed, I was able to narrow the focus considerably. I realized I needed to know only two things: first, how to read my labs so I would recognize when a change in treatment is needed; secondly, the set of available treatments (e.g., principal drug, manner and frequency of administration, likelihood of success, side effects and possible complications) and procedures (e.g., autologous transplant, allogeneic transplant, radiation). Planning develops the rationale that helps to determine the order in which the various treatments should be tried. (Determining the best order is a matter of considerable medical controversy.)

The final element of planning is to determine empirically the maximum safe interval between measurements of disease activity. I can then put the date of my next set of tests/measurements on the calendar. At one point, I was safely measuring at four month intervals and was thinking about stretching them to six.

What does planning like this give me? The pleasure of giving the disease not one more minute of my time than is absolutely necessary. The pleasure of being fearless for long periods despite having an incurable, universally-fatal disease. Yet so many of my friends have turned their disease into a hobby! They devote obsessively large amounts of time to irrelevant considerations, such as following cutting-edge genetic-level research into improving prognosis (which is at the moment either unavailable or useless to us in making nearly all but a very few treatment decisions), studying potential causes of the disease or the mechanisms of the disease,  monitoring disease activity as often as their exasperated doctors will allow, or research into new therapies that will take years before becoming available, if at all. I think that every minute I don't spend obsessing about multiple myeloma is a minute I can spend living a normal life.

When I tell this to my obsessed friends, that I spend as little time as I possibly can thinking about, discussing, or studying myeloma, they tend to look at me with confused stares. I tell them there is no survival advantage to using my time in this way, so why do it? Maybe they disbelieve me, maybe they think I'm just nuts, but mostly they just resume talking about their obsession as if I hadn't said a word. I might as well be exhorting them in Latin for all the good I manage to do. Reason is remarkably ineffective once fear-based obsession has taken hold.

I tell them, decide what that maximum safe measurement interval is in their particular case, set their alarm clocks to that date (that is, the date when they will next have to do their labs), and realize that between now and then, there is no survival advantage to thinking about their disease. They will not die a minute sooner if, between now and then, they deny the disease a second's thought. Instead, they can live as normally as their physical condition will permit. When the alarm goes off, study the labs. Is it time to make a change in treatment? If not, reset the alarm and return to the joys and sorrows of normal life.

I've reached a treatment decision point. My labs are horrible. The evil numbers are sky-rocketing while the good numbers are falling:

And it's not just the numbers: neuropathic pain has increased to the point where I need Vicodin nearly every day; I have developed a minor but annoying case of osteonecrosis of the jaw; and steroids, which drive me crazy, don't seem to be providing any benefit.

The problem is that I've already become resistant to the small handful of standard chemotherapies for multiple myeloma, I'm not a candidate for a second stem-cell transplant even though I have stored the cells for it (because of extensive plasma cell infiltration of the marrow), and Medicare won't pay for a reduced intensity allogeneic transplant from a matched, unrelated donor until January (I'll explain that life-threatening annoyance in a subsequent post). Which means, between now and then, I can't afford to do nothing and there's little that remains to do but swallow the arsenic.

Arsenic trioxide (Trisenox) is given by infusion, not by tablet, and it's just as terrible to endure as you might imagine. Because it works completely differently from the other therapies, it has a reasonable chance of working for me, and perhaps it will work long enough to get me through January and the allogeneic transplant. The trick is to administer enough arsenic to be effective in fighting the cancer without actually killing the patient (viz, me). If you're wondering what the last-chance, last-ditch chemotherapy is, arsenic trioxide is probably it. One person I know went deaf from it (although his hearing eventually returned). As an avid pianist, the thought of losing music is difficult to bear. On the other hand, the neuropathic pain is limiting my practice time as it is.

Because so few have had to take arsenic, I'll be reporting on the experience extensively as it turns me into a hairless baby spider. Meanwhile, it is time to resume the honeymoon (we filed for Ivonne's green card a couple of weeks ago, which is a paperwork and expense ordeal not dissimilar to chemotherapy).