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Last year I read a lot of books. I have changed the way I go about reading, because I was not being able to read much. Oh wait, before I go on I should tangentize what I've discovered about my particular sort of chemobrain.
I have been really very frustrated about my brain functioning. It's been nearly three years since I started cancer treatment-more than two years since it mostly ended. I felt I had a right to expect more improvement. I don't know why I felt that! I have returned to the world of the living in so many ways. I no longer sleep four two to six hours every daytime, for example. I never got much flakier than I was to begin with. I mean, I don';t screw up my finances, I hardly ever forget my appointments or miss deadlines. Those are chronic problems I have always had. I have simplified my life so that there's less to screw up, but then there's less to my life too. So that's kind of a neither her nor there thing.
BUT. two really important functions of my brain have just been torpedoed and it is not until very recently that I've seen much improvement: reading and writing. No, I didn't lose the basic skills. I lost the thread. It was so hard to just read a book from beginning to end. And writing-it's like the story monster has just laid down and --maybe not died, but gone into a deep state of hibernation. With occasional surfacing. I've written a few drafts, maybe three? novellas and a couple-few stories? But not successfully? Sort of promisingly, but something's missing? And I haven't been able to do any sustained writing, hours at a time, days at a time, get the thing done. I've spent months at a time with a blank space where the story monster ought to be restlessly swimming or pacing or whatever it does. It's not like that part of my brain feels numb, either--it feels gone, a lot of the time.
I thought by now it couldn't be chemobrain anymore. It was depression, maybe. Or maybe I had just lost it. Maybe it was the onset of some sort of dementia. Maybe I actually never had a story monster, maybe it was an illusion, or it's a false memory. Or something. But recently I decided to look it up. I forget what search terms I used. But I got a revelation.
First of all, there's no expiration date on chemobrain. Secondly, some people have late onset chemobrain. Thirdly, it can be quite this specific, though I didn't see any examples quite like mine. Fourthly, while there's a lot of mystery, there's some known mechanisms for this when a person has the kind of cancer I had and the kind of treatments I had...and the kind I am still undergoing. I had an estrogen-dependent breast cancer and a large part of the treatment was starving it of estrogen. And now I am taking an estrogen antagonist called arimidex, which shuts down every last scrap of estrogen production in my body. There's a bit of redundancy in the body, so you can do without a lot of your basic chemicals, I guess.
So one of the jobs that estrogen does is some subtle regulating in the brain. When you take away all the estrogen from the brain, cells stop reproducing in the hippocampus, and myelination in the brain is messed up. This is kind of teasingly interesting, but I've read about hippocampus function, and that seems to be fine for me (the hippocampus is implicated in several kinds of memory and some spatial functions. I have never had a great memory, but my memory is not pathologically bad). I saw some assertions that estrogen helps regulate mood, but I'm not sure that's part of its brain function, and I'm pretty sure my range of moods are not strikingly different from before. I'm less volatile than I was when I was younger, but I've been that way for a long time. And I can't say that I see things in myself that are the result of demyelination (which is a process of MS as well, but I don't see any indication that estrogen lack causes MS).
So what I have left in this is: well, I think probably that the mental problems I've been having might be a bit related to wiping out every scrap of estrogen from my body. But the mechanism is a mystery, because my problems aren't the problems that are listed for these brain functions. But. Having a thing to blame it on does wonders for my mood and optimism! Because if there's probably a cause for it, I can fight that. If it's all completely subjective and there's no reason for it, I don't know how to not wallow.
I signed up for the electronic library that my pub lic library belongs to. I read these ebooks and listen to these audiobooks mainly on my phone. And it turns out this change works for me! Not, I think, because of any particular virtue of the format, but just because it's different. Audiobooks have the advantage that I can listen to them while I do things with my hands, and ebooks on the phone have the advantage that reading them on the bus doesn't cause me to get motion sickness.
Last year I read about two books a week, starting in July. This year I seem to be doing the same. I do still reject a lot of books without finishing them. Part of that is that the Northern California Digital Library doesn't have a lot of books in my favored genres. I end up sometimes unable to find any sff available except for stuff I really don't want to read. So I end up exploring other kinds of books, and I'm just likely to not like quite a lot of mysteries, romances, literary novels, women's fiction (by which I mean that kind of literary-adjacent novel that centers the experience of modern women), or historicals. But I'm been doing pretty well at picking ones I'm going to be able to finish, and it's a lot less frustrating to put a book down without finishing it when there's been quite a lot of appealing ones recently.
On the writing front. I don't want to jinx it, but I seem to be a bit better. I don't know what's doing it. Back in August I tried doing a lot of intensive outlining in a paper notebook, and it was fun for some weeks, but that book is still unwritten. I've been talking with some supportive (and demanding) friends, and maybe that's done it? But I think maybe knowing that my drug is causing at least some of the problem may have loosened me up also? Maybe being freed of the feeling of frustration in my self has been the thing I needed?
Anyway, that's where I'm at. And I think I want, at the end of the month, to do a wee roundup/capsule review of the books I've read this month, and maybe continue the rest of the year?
edit: the biggest symptom caused by the arimidex that I've noticed all along is an intermittent, trivial-to-severe, nocturnal pain in my arms and hands (weirdly specific). It lasts just long enough to wake me up and rarely keeps me awake. The frequency and severity of the pain vary randomly as far as I can see. I have a small prescription of tramadol (an opioid!) which I more or less keep as an amulet. Aside from the sleep interruption it doesn't seem to interfere with my life: there's no impact on use or function. I wonder if this is a myelination issue? Or is there a different mechanism?
The thing about having had several long-lasting painful conditions in one's life is that one can assess a severe pain as no big deal, comparatively, because its duration is not huge and it doesn't accompany other more important problems.
I have been really very frustrated about my brain functioning. It's been nearly three years since I started cancer treatment-more than two years since it mostly ended. I felt I had a right to expect more improvement. I don't know why I felt that! I have returned to the world of the living in so many ways. I no longer sleep four two to six hours every daytime, for example. I never got much flakier than I was to begin with. I mean, I don';t screw up my finances, I hardly ever forget my appointments or miss deadlines. Those are chronic problems I have always had. I have simplified my life so that there's less to screw up, but then there's less to my life too. So that's kind of a neither her nor there thing.
BUT. two really important functions of my brain have just been torpedoed and it is not until very recently that I've seen much improvement: reading and writing. No, I didn't lose the basic skills. I lost the thread. It was so hard to just read a book from beginning to end. And writing-it's like the story monster has just laid down and --maybe not died, but gone into a deep state of hibernation. With occasional surfacing. I've written a few drafts, maybe three? novellas and a couple-few stories? But not successfully? Sort of promisingly, but something's missing? And I haven't been able to do any sustained writing, hours at a time, days at a time, get the thing done. I've spent months at a time with a blank space where the story monster ought to be restlessly swimming or pacing or whatever it does. It's not like that part of my brain feels numb, either--it feels gone, a lot of the time.
I thought by now it couldn't be chemobrain anymore. It was depression, maybe. Or maybe I had just lost it. Maybe it was the onset of some sort of dementia. Maybe I actually never had a story monster, maybe it was an illusion, or it's a false memory. Or something. But recently I decided to look it up. I forget what search terms I used. But I got a revelation.
First of all, there's no expiration date on chemobrain. Secondly, some people have late onset chemobrain. Thirdly, it can be quite this specific, though I didn't see any examples quite like mine. Fourthly, while there's a lot of mystery, there's some known mechanisms for this when a person has the kind of cancer I had and the kind of treatments I had...and the kind I am still undergoing. I had an estrogen-dependent breast cancer and a large part of the treatment was starving it of estrogen. And now I am taking an estrogen antagonist called arimidex, which shuts down every last scrap of estrogen production in my body. There's a bit of redundancy in the body, so you can do without a lot of your basic chemicals, I guess.
So one of the jobs that estrogen does is some subtle regulating in the brain. When you take away all the estrogen from the brain, cells stop reproducing in the hippocampus, and myelination in the brain is messed up. This is kind of teasingly interesting, but I've read about hippocampus function, and that seems to be fine for me (the hippocampus is implicated in several kinds of memory and some spatial functions. I have never had a great memory, but my memory is not pathologically bad). I saw some assertions that estrogen helps regulate mood, but I'm not sure that's part of its brain function, and I'm pretty sure my range of moods are not strikingly different from before. I'm less volatile than I was when I was younger, but I've been that way for a long time. And I can't say that I see things in myself that are the result of demyelination (which is a process of MS as well, but I don't see any indication that estrogen lack causes MS).
So what I have left in this is: well, I think probably that the mental problems I've been having might be a bit related to wiping out every scrap of estrogen from my body. But the mechanism is a mystery, because my problems aren't the problems that are listed for these brain functions. But. Having a thing to blame it on does wonders for my mood and optimism! Because if there's probably a cause for it, I can fight that. If it's all completely subjective and there's no reason for it, I don't know how to not wallow.
I signed up for the electronic library that my pub lic library belongs to. I read these ebooks and listen to these audiobooks mainly on my phone. And it turns out this change works for me! Not, I think, because of any particular virtue of the format, but just because it's different. Audiobooks have the advantage that I can listen to them while I do things with my hands, and ebooks on the phone have the advantage that reading them on the bus doesn't cause me to get motion sickness.
Last year I read about two books a week, starting in July. This year I seem to be doing the same. I do still reject a lot of books without finishing them. Part of that is that the Northern California Digital Library doesn't have a lot of books in my favored genres. I end up sometimes unable to find any sff available except for stuff I really don't want to read. So I end up exploring other kinds of books, and I'm just likely to not like quite a lot of mysteries, romances, literary novels, women's fiction (by which I mean that kind of literary-adjacent novel that centers the experience of modern women), or historicals. But I'm been doing pretty well at picking ones I'm going to be able to finish, and it's a lot less frustrating to put a book down without finishing it when there's been quite a lot of appealing ones recently.
On the writing front. I don't want to jinx it, but I seem to be a bit better. I don't know what's doing it. Back in August I tried doing a lot of intensive outlining in a paper notebook, and it was fun for some weeks, but that book is still unwritten. I've been talking with some supportive (and demanding) friends, and maybe that's done it? But I think maybe knowing that my drug is causing at least some of the problem may have loosened me up also? Maybe being freed of the feeling of frustration in my self has been the thing I needed?
Anyway, that's where I'm at. And I think I want, at the end of the month, to do a wee roundup/capsule review of the books I've read this month, and maybe continue the rest of the year?
edit: the biggest symptom caused by the arimidex that I've noticed all along is an intermittent, trivial-to-severe, nocturnal pain in my arms and hands (weirdly specific). It lasts just long enough to wake me up and rarely keeps me awake. The frequency and severity of the pain vary randomly as far as I can see. I have a small prescription of tramadol (an opioid!) which I more or less keep as an amulet. Aside from the sleep interruption it doesn't seem to interfere with my life: there's no impact on use or function. I wonder if this is a myelination issue? Or is there a different mechanism?
The thing about having had several long-lasting painful conditions in one's life is that one can assess a severe pain as no big deal, comparatively, because its duration is not huge and it doesn't accompany other more important problems.
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