The mind-brain interface, for lack of a better word, is an interesting thing. The effects of the current experiment to jump-start my adrenal system have me thinking about it, especially after yesterday’s post about my interest in/ability to do Sudoku. Upon reflection, I’m not sure when I stopped doing Sudoku, though I know it was sometime early last summer. At the time, it wasn’t a big issue, nor was it connected to any failure or frustration; it just stopped being interesting. I do recall noting this, in passing, and shrugging it off with the self-knowledge that I tend to go in cycles with activities anyway. The year I learned to knit, for example, I made eleven sweaters. What wasn’t part of that calculation is that Sudoku hadn’t really fallen into that category, as it has never been a part of an intense burst. In retrospect, I think I stopped doing it because I was losing the ability to do it, even though there was never a conscious process of abandonment. That change was just one of many adaptations in a very long process of adapting to increasing deficits, from starting personal training because of how often I fell down to making many (many) more notes in my lesson plans and talk outlines to be able to get from one topic to the next. At the time, we didn’t connect any of these compensations to each other or perceive them in any larger context. No one ever imagined the tumor that was at the root of all the disparate symptoms.
The stimulus for these reflections is a rising awareness that something similar seems to be going on right now. The daily dose of steroids that has been my regime for months was originally supposed to be an interim measure, to get my adrenal system going again. The theory behind Plan A was to let a very low dose of steroids send signals to the portions of the system that had shut down during surgery and its aftermath. The hope was that the adrenal system would get in the rhythm and pick it up on its own, as the ACTH test showed that, when properly stimulated, it produces cortisol just fine on its own.
Plan A didn’t work, as even after months, my morning cortisol levels were still quite a bit below “normal” levels. Plan B, now underway, involves tapering off the steroids by alternating a full dose one day with a half dose the next. The hope is my system will notice the missing elements and respond by producing its own.
The tapering is going well enough, with no energy crashes or other obvious effects. This is a positive sign, as early on, when I missed a dose by accident, the effect was fast and unmistakeable: by late-afternoon, there wasn’t any energy left. None. What is happening is now is, I suspect, another of these subtle mind-body interactions that’s easy to explain away for other reasons. The effect is that, by after dinner, I switch into a low-key “off” mode. Unlike most evenings after dinner, I have no impulse to circle back and tidy up my desk, answer email, make lists for the next day, read or work on anything. In the rest of my life, it’s a rare evening that none of those happen. Instead, for the last several nights, Shea and I have been watching episodes of NCIS. This is unusual for us because while we have family movie night on Fridays (and some Saturdays), I cannot recall a weeknight where we’ve watched anything in a long time. Yet that’s been my urge, and so that’s what we’ve done. Sure, there are other extenuating factors, most especially that we leave to take Shea to college tomorrow, but my hunch is that the urge to sit and watch, not do anything, is another side-effect of this phase of the medical adventure.
A different, less palatable side effect of Plan A has been a slow-but-steady weight gain over recent weeks, after being completely stable (or losing) since the immediate post-surgery dip. The disturbing thing has been that this gain has occurred in the face of regular exercise, at least 20-30 minutes a day. (Yes, I monitor intake, too, and it seems unlikely to be the source of the problem.) Hence our interest in NCIS: we’ve been auditioning shows for the treadmill. An episode of an hour-long broadcast show has between 42-45 minutes of content, usually, so is will be perfect for providing diversion for an increased period time to help counteract the gain. The steriods seem likely to be at the root of this and I can hardly wait to be quit of them for that reason alone, though there are also other reasons, I guess, to wean off even this small dose. We’re hoping Plan B works, and I regain some equilibrium both on the energy and weight front. Plan C, waiting in the wings, is taking small doses of real cortisol, as opposed to artificial/pretend-cortisol in the flavor of prednisone. We haven’t read up on that one yet, and probably will not for a bit longer. I’m sure ready to have some energy and interest in anything other than sitting come nightfall.
It’s hard to believe that the eve (as it were) of taking Shea to college is upon us, but it is. She’s finally started packing (yesterday) and has done a big round of leave-taking with her friends. Wish us luck!