It appears that the two modes of this blog are “boring stuff about drug pricing” and “symptoms.” I guess we all process in different ways.
I’ve mentioned before that brain fog has been something I’ve struggled with over the last few months. There are times—whole weeks, even—when I feel cognitively fine, and can’t really tell that there’s anything wrong with my brain. But at other times, a thick fog comes over me. Not a mood fog, although if it persists long enough, it certainly becomes one. But a feeling of cloudiness, of struggling to make sense of things, of feeling like there is a wall between me and the world, like a zombie.
Although I had some mental cloudiness during chemo a year ago—a common side effect, and one that persists for a subset of people—it really seemed to go away in the months that followed. It only reappeared after I had my thyroid removed in October.
Since then, however, I feel like my brain is extremely fine-tuned. The anti-estrogen drugs (which I am not currently taking) bring on the fog, and also crushing depression—though a kind which magically disappears when I stop taking them. I had a terribly foggy few days after trying Prilosec, of all things—an outcome my doctor was skeptical of, but that the internet seems to support as a possibility. I am starting to think that the waves may also follow my monthly Zoladex injection, which is not a pattern I was initially attuned to.
Last week’s fog, though, was especially upsetting both because of its depth and duration, and because it came at a time when there was no obvious explanation—except, possibly, the Zoladex, although that’s not a new variable. It’s one thing to feel like your brain is functional except when you’re taking certain drugs. Even if it’s really bad not to be taking them from a cancer perspective, you still have a choice. It’s quite another to feel like it’s totally beyond your control.
For whatever reason, after a week of awful fog, it largely lifted yesterday. I felt 90% normal again, with no obvious explanation for the change. I am deeply relieved—and yet I don’t know what this means for my life. Can I make it go away for good? Surely there are many things left to try—drugs, closer monitoring of thyroid levels, behavioral experimentation. It’s certainly too early to conclude this is permanent, or if it is, how much impact it will have on my day-to-day functionality.
But it’s very difficult to reconcile this not-normally-functioning brain with my sense of self. As an academic, all the most important parts of my work involve high-level cognitive functioning. And there’s a presentation of self part as well. If I am foggy, do I postpone a meeting? Fake my way through? How do I adapt?
Having to “perform” when I feel drugged is also very anxiety-producing, which in turn makes the brain function worse. I find myself hesitant to make plans that rely on my being able to function normally at a specific moment in time. A couple of times I’ve had to cancel things because I simply can’t do them at the time they are scheduled. And I’ve had moments in public talks where I know I’m not making sense, because I’m not processing normally. Yet I also can’t just stop my life because I can’t always predict how my brain will be behaving.
I know there are risks to putting something like this out there, and pre-cancer I don’t think I could have been public (even on this small scale) about it. But part of finding the new normal is figuring out how to remake my life with the body I’ve got. I’m hopeful that this is something I can learn how to manage. I think I still have contributions to make, intellectually as well as on a human level. But pretending that nothing has changed just isn’t working for me.