Traveling this week, in a hotel room by myself, I succumbed to a form of self-pity that manifested itself as wondering if a headache was caused by another tumor growing in my head. In general, self-indulgent drama of this nature is not my cup of tea, and it surprised me. The fears about all this stuff run deeper than I like to acknowledge. When I came home, I renewed my strident requests for Michael to find the last scan showing my post-surgical brain, some months out. Happily, he’d been cleaning his desk (some more) while I was gone and had located the disk. Seeing it made me feel better. There’s something about seeing the changed geography that makes it more real to me, visual creature that I am. One of these days, we'll post the new scan. That's behind some other more urgent matters in the queue right now... maybe this weekend.
Aside from the travel, this week has been about cortisol levels, which as measured this morning, are still lower than desirable. For a quick recap, morning cortisol levels (when they’re the highest, declining over the course of the day) are ideally about 18-20. Mine was at 3-5, by the time Dr. Thoughtful figured out that secondary or tertiary adrenal system failure might explain my stamina problems and cognitive fuzziness where I felt like I was swimming through mud most of the time. Since then, I’ve been taking a very small steroid dose every morning, which simulates natural cortisol levels and improves dramatically my energy and crispness. However, this regime has not achieved its primary goal of re-starting my own adrenal system so it produces my own cortisol. Today’s level, the same as the last abstain-and-test result, was 11. We previously established that my system produces plenty of cortisol when properly stimulated, and this regime was supposed to help it relearn to do that. Since it didn’t, we’re on to Plan B.
It’s not a good thing to stay on these steroids indefinitely, so Plan B means tapering the daily dose to see if my system will pick up the slack that still exists. If this doesn’t take after a while, we will need to consider moving from steroids to artificial cortisol for a longer period.
Tomorrow, we hit the road for 36 hours or so in Chicago, then home for the weekend before classes start on Monday. I’m excited about my new adventure, even if the paperwork seems hopelessly screwed up right now. Otherwise, I’m still struggling to devise the most constructive, appropriate path to take about my larger concerns. It’s a really hard problem and I’m working my way through it.
Enjoy what’s left of summer!