Relapse, Error, and Fear

I wrote this email to my doctors early last year when I dropped out of remission after my autologous stem-cell transplant of 2005. It is a rare admission of error on my part, with an explanation of how to avoid it in the future. It is not an easy read in that I employ some technical jargon and don't explain everything to the unfamiliar, but if you get to the end, you may appreciate the conclusion and might be able to apply it to your own life in some context.

I don't like how I'm feeling. I suspect that the light chain deposition rate is now heavy enough to involve the central nervous system, as it did long ago. For years before I was diagnosed, I had one or more pneumonia-like episodes each year that weren't pneumonia, I sweated copiously all the time, and it was impossible to make a room too cold for me. After treatment, all signs went away, including also high blood pressure, elevated resting pulse, and late-onset psoriasis. Now, some are coming back.

Urgently, we have to get the numbers down for transplant. Not that we wouldn't win an argument with Medicare, since the risk of a recently-contaminated stem-cell harvest wouldn't be at issue, but, still, it is a good idea—which until recently lacked an evidentiary basis, at least to my way of thinking—to lower the numbers as much as possible before transplant. It certainly can't be a bad idea.

So instead of doing 20mg dex weekly, I think I ought to be doing 20mg/day for two consecutive days per week. While being more likely to bring the numbers down quickly, it also is the heaviest dose my tortured mind can stand. Now is not the right time to be looking for the lowest effective dose on the longest interval, which would otherwise be my considerable preference.

Fear is afoot. I am always more comfortable coming to conclusions when I'm staring at evidence, which, in this case, may be found in lab tests yet another week off. Normally, I would resist any premature change in treatment protocol, any change without some objective evidence behind it, and I would strongly resist if I thought that the pressure behind changing was solely the fear of not changing. But I want the aSCT to be started and over with in August, and, clearly, two days of dex instead of one can't make the outcome of the upcoming aSCT worse, despite the enormous stress it will put on me now.

I've decided to allow fear get the better of me in this instance, something I rarely do, which is not bragging; I'm not sure suppression (or repression) of fear is always a virtue. For one thing, suppressing fear in order to think clearly requires enormous focus and energy, which, if high and enduring, can destroy the good aspects of life that remain.

This time, I deserve the fear. The theory behind using the 1998 cells in 2005 was that, when the disease came back, it would very much resemble what it was in 1998 (responsive, because nearly naive to chemotherapy, and unevolved). The theory turned out not to be true, although I believed it.

Which means that incomplete marrow ablation is the dominant factor. A decade ago, when I first tried to find out why transplant failed, I asked about this with every expert I ran into. The answer usually was, we can't get an uncontaminated harvest; at least one malignant plasma cell gets through, divides, and causes the eventual relapse. A smaller number of others believed that malignant cells survived the high-dose Melphalan. I believed the former perhaps because I liked it better; a contaminated harvest produces a more-desirable outcome at relapse. The returning disease, in theory, would be slower growing and easier to treat if it resulted from a contaminated harvest rather than from incomplete marrow ablation.

In my case, a contaminated harvest could not have caused the appearance of the more aggressive disease I now have because it was frozen (and contaminated) in 1998. So unless cells evolve while frozen at near absolute zero, incomplete ablation is proved, at least in my case, and, by extension, for all. Even if both theories are true, the combined result should manifest first from cells that survive the ablation, that is, those more aggressive (more quickly dividing) and less responsive to chemotherapy.

The reason I'm struggling with anxiety is because I truly did not expect to find myself, at relapse, looking at so few tolerable options. The returned disease was not expected to be more aggressive than the disease in 1998, and certainly not less responsive to chemotherapy.

And yet it is both.

The reason we fear the unknown is that it catches us by surprise and, therefore, unprepared; we do not know or recognize our deadly adversary. With the surprise comes deep and sudden fright, overcoming what before we refused to accept—that closer than we had thought, but still a ways off, lies the grave. I can see it hazily in the distance.

Tonight I am exhausted from fighting fear and think that for a time I will relax and let it have its way with me. In a situation like this, a temporary surrender is needed from time to time to keep ones balance.


Lon

PS: No book can be written while in the grip of strong emotions, but only in remembering them. Which is why, since relapse, I haven't touched mine. That may be changing. Like Hamlet, now that the die is cast (i.e., the transplant decision has been made), I may no longer be hamstrung.