Hurry up and wait.

For a couple of days there, it looked like my repeat AVS was going to happen on August 19. It’s not, and is now being delayed until “sometime in September” but exactly when remains unknown.

While a part of me just wants to SCREAM at people for how ineptly my whole case has been handled, there’s still a part of me that believes that everything happens for a reason, and that the reason for this is that I want to be good and certain that the spiro is out of my system completely. As of today, I don’t believe it is. I’m still having HELLA estrogen-related side effects. I’ll spare you the details, but let me assure you that it’s not fun.

Which brings me to how I am doing. Quite frankly, not well at all. I know that part of it is what I’ve been put through, part of it is the biochemical disturbance caused by the spiro, and that either one of those things on its own is probably enough to do anybody in, but in combination it’s just too fucking much. The low potassium causes a lot of pain (and a lot of worry about knowing when it’s bad enough to warrant a hospital trip) and the aforementioned side effects are pretty painful too. My head is completely fuzzy all of the time, although I’m happy to report that I haven’t lost anything this week – so far, anyway – so maybe that’s getting better. And then there’s the whole “how long is too long?” question of going through life with a disease that causes uncontrollable hypertension.

There’s not really any point to worrying about what you can’t control. I know this. But I’m convinced that in the last few months this thing has gotten a lot worse – one very real possibility is that the tumor has grown quickly and is producing more aldosterone – but that my medical team is so clueless about it that nobody is acting with any real urgency. I don’t mean this to criticize; I think they are all doing what they think is right to the best of their knowledge. But I’m starting to feel that maybe the best thing to do is to actually go to the NIH under their clinical study and get this thing taken care of.

Trouble is, the only way that could happen is by cashing out my 401K. Don’t think I’m not considering it, because I most certainly am.

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