Since the last things I posted were sort of depressing, I feel like I should counterbalance that with something more positive. The last two weeks were extremely rough – lots of 7s and no 3s. But for whatever reason – I have my guesses but really who knows – yesterday and today have been a substantial notch better. I’m back in “foggy but functional” territory.
Of course, in the interim I’ve dropped lots of balls. I am an in-box zero person with 245 emails; I’ve got two overdue reviews, I never submitted a blurb, and I haven’t yet constituted a committee whose work I believe is supposed to be finished in a week. I canceled meetings and ignored many requests, including some pretty fancy ones that probably would have been good to respond to.
And now – assuming things hold – I dig out. The crazy thing about illness/pain/unpleasant human experience is that it’s kind of hard to hold onto once it goes away. It was literally two days ago that I was struggling to answer a simple email because my brain was truly not functioning. And now I’m like, hmm, it doesn’t seem so hard to answer an email today – maybe I should have just been trying harder.
So now I start a process that has unfortunately become familiar – of apologizing, perhaps mentioning something about chronic health issues, and trying to get the balls moving again. As “getting better” has sort of stalled out – even as I remain hopeful that I’ll make more progress – it gets increasingly hard to decide what to say yes to.
I know when I take things on that there is a very real chance I won’t be able to follow through – yet I’m still following through on most things, and simply putting everything on hold because I am intermittently not functional doesn’t really seem like a solution. For big commitments, I can tell people up front. But responding to review requests with “yes, pending my continued functionality” seems like a bit much.
But boy do those obligations add a lot of stress during the less-functional periods. And boy is it hard to deal with the aftermath when they end. For now, I’m just trying to let go of the guilt. I have let some people down, but no babies have died. I don’t believe any careers have been jeopardized. I really really hate not being reliable, I think because I was sort of flaky in my callow youth and worked very hard to overcome that. In the end, though, there are worse sins.
(This post brought to you by being not-quite-ready to face the 245 emails.)
I’m still uncomfortable being so public about this stuff, even with a nameless blog and a locked Twitter account. I certainly am not this open in everyday life.
But it’s helpful for me, and I know is useful to at least some people. And I guess I’m still in the IDGAF phase: I’m doing the best that I can, and until I find a therapist who really clicks, this is the closest thing I’ve got.
Anyway, after an evening spent binge-watching Junior Bake Off (kids baking! somehow even more soothing than the original!), things have notched back to unpleasant but tolerable this morning. I’m in the office and ready to prep class.
Why am I writing, then? I guess I’m trying to work out the practicalities of what being an academic looks like in the face of what may be — I hate to face this — permanent, if also intermittent, cognitive challenges.
The thing is, there are times (last Wednesday!) when I feel like 90% of my old self. There are specific issues that never go away. My short term memory is sort of shot. Sorry, students whose names I don’t remember. But that’s a problem I can compensate for. It doesn’t threaten my underlying identity.
And as long as I feel like my underlying capacities are somehow intact, but buried beneath this fog — as long as I can see them there during the moments when it clears — I have hope that I can do the work that I care about. And I don’t feel like a complete fraud continuing in the job that I have.
But it is a very hard thing to work around. Part of the fog issue is a sort of mental post-exertional malaise. The more mental effort I exert, the foggier I get. And there’s no quick reset; improvement takes hours, or overnight.
There are days when I can exert quite a bit before this becomes a problem, and days where it starts bad and gets worse. But what’s interesting is both how much of my job doesn’t require much mental exertion, and which tasks now “cost” more than they used to.
For example. I currently have an administrative role. This actually is working out surprisingly well so far. Meetings and emails and writing memos are pretty light on the cognitive front. Teaching is more taxing. I’m definitely an introvert, and teaching has always taken an energy toll for me, as it does for many people. But now it takes a brain toll as well, from the 80 minutes of intense focus.
Real writing, as opposed to blog post writing, is unsurprisingly a high-mental-exertion activity. But, it turns out, so is reviewing. If I “waste” my brain energy on reviewing someone else’s paper, I now lose, from my limited quantity of best-brain-function time, both the time it takes to do the review, and the time it takes to recover from doing it. On the flip side, there are many research-associated activities that don’t seem to run down my reserves as quickly as writing, or, alas, reading challenging texts.
Of course I am enormously lucky to have an incredibly flexible job. I can say no to things, and choose to do more of the work that works for me. Will the world be okay if I stop reviewing, and direct my energies elsewhere instead? Yes, it will. But it is not very easy to do in an economy of favors, and there’s no short way to explain that the cost of an activity is just too high to say yes to — at least not without spending down my credit. I guess I’m still struggling to get the mix right.
Usually when I post here it’s when things are on an upswing. Some kind of rough episode has happened, but is starting to pass, and I need to digest it and look forward.
Today I’m posting from the bottom, though. I feel like shit and just need to scream into the void.
I still have very little grasp on what makes my periods of brain fog better and worse. Clearly there are basic things that worsen it, like poor sleep or very long days.
But I can be taking perfect care of myself and it still returns. It’s connected to my thyroid levels, somehow, but I don’t think that explains all of it. (Although it didn’t really kick in until my thyroidectomy.) It’s doubtless cancer-related, though I don’t know anyone with this level of debilitation from cancer treatment alone. It will ease for a little while — perhaps a week — then viciously resurge. Over time, I’ve been averaging two bad days to one good day (which does not mean symptom-free), and that ratio is not improving over time. I’m learning to function through it more. But sometimes even that’s not possible.
“Brain fog” is a vague descriptor, and I don’t know if all the people with brain fog from various causes are experiencing the same thing. For me, the light version means feeling a little slowed down, a little off my game. My memory isn’t quite up to speed, my processing time is slower, tasks that should be easy — reading a journal article — are unexpectedly difficult. I can’t keep two things in my head at once. I feel a little unpleasantly spacey.
As it gets worse, it’s less about being “off” or slowed down and more of an actively dominating sensation. It feels like I am observing the world with a giant bell jar over my head that has been smeared with Vaseline. It feels like I’m trying to function after having three or four drinks. It doesn’t matter if I’m trying to think; even if I’m just doing the dishes the sensation is overwhelmingly awful. This piece by Ed Yong — about COVID long haulers, which I am not — comes closer to describing it than anything else I’ve read.
It’s not pain in the physical sense, but I think of it in terms of a 1-10 pain scale: at a 2-3 I can live pretty normally, though it’s never gone, and it still impacts my ability to do cognitive work. At a 4-5 it’s hard to ignore — a constant distraction, although I can get through a pretty normal day as long as it’s not cognitively demanding. And at 6-7 — which is where we are right now — it’s pretty much all I can think about. Sometimes I can numb out a bit with mindless TV. I don’t drink a lot, but drinking also numbs it. Basically I am trying to do things to distract myself from the horrible sensation.
“Fortunately,” most of my life is lived between 2 and 5. The last 6 was in late July. But for whatever reason, after a good ten-day stretch in the second half of September, things started to go downhill and, since yesterday, we’re back at 6.
So I’m yelling into the void. I’m not answering your email. I’m not scheduling a talk, or prepping for class or (imagine) writing a paper. I’m trying to distract myself, because although it sucks all the time, I know it won’t stay at a 6. It will get better. I just have to wait it out.
This has been a very strange couple of months. On the one hand, my book has been more successful than I ever imagined, I was promoted to full professor, and exciting opportunities keep landing in my in-box. Basically, all my professional dreams have come true.
On the other, my capacities are clearly nowhere near where they were two years ago, I spend all my time trying to keep my body and brain more or less functional, and I don’t have a “next project,” because I’ve spent the last two years trying to 1) stay alive, 2) perform the most basic functions of my job, and 3) pursue recovery.
So I’ve been spending a lot of time lately playing the successful academic, promoting the book and responding to requests, while in real life I’m bumbling along more-or-less functional, trying to figure out how to navigate what comes next. (This is the part, I guess, that you’re not supposed to say out loud.) Because I was on sabbatical in the spring, I don’t really know how I’m going to do when a real semester starts.
There are moments when I’m optimistic that with adjustments and flexibility it will all be fine. But there are also times — like when I traveled to a two-day workshop last month, with a tiring cross-country flight and a morning-till-night schedule — when it’s clear that the gap between what I could sustain in the Before Times and what I can do now is large indeed.
At the moment, I’m trying to let go of the pressure — from both internal and external expectations — to have a next “big thing” and focus on just moving forward, however slowly. I am incredibly lucky to have an extremely secure job in an extremely well-resourced institution with a huge amount of flexibility in terms of how I actually spend my time. If I were almost anything but a tenured professor I don’t think I’d still have a job after the last two years.
(As an aside, this is a fairly radicalizing observation — how precarious most people’s lives are in the face of unexpected illness or disability. One of the many things I knew at an intellectual level but that gains a different resonance in the face of experience.)
I am pretty sure I have more to contribute. But it’s very hard to let go of internalized performance expectations — of constant productivity, of always being “on”, of operating at maximum capacity — and move at one’s own pace. And there’s the fear that I won’t be able to contribute, that I won’t even be able to perform the basic functions of my job, that the brain fog means I’ll never do good work again.
But one good thing about life-threatening illness is that it also clarifies what’s important, and what doesn’t really matter in the end. It encourages an IDGAF attitude toward the stuff — other people’s opinions, doing stuff just because you “should” — that is often just a distraction from following your own lodestar. And particularly at a time when democracy is eroding, when rights are being rolled back, when the window to respond to climate change is closing, playing the game of academia for its own sake feels dangerously solipsistic, anyway.
So I will be over here doing my own thing — taking on new challenges but also still testing the waters; hoping for long-term improvement but also coming to terms with the possibility that this may be as good as it gets; trying to live my life and figure out how I can make some positive contribution. Because, I guess, I’m constitutionally incapable of not trying.
It’s probably good news that I have not been writing here consistently. I’ve been fairly functional since the beginning of April—which is not to say anywhere near “normal,” meaning my pre-cancer state, but able to work and do many cognitively complex tasks. Although it is still unpredictable when the dreaded brain fog is going to hit, there have been long stretches where it’s almost unnoticeable.
I’ve also gotten better at managing and working around the fog—identifying when it’s happening, doing the things that help to reduce it, shifting to tasks that are more feasible when it hits. This is all encouraging and gives me hope that I’ll be able to return to full, or close-to-full, productivity at some point.
That said, there are still major challenges in figuring out how to navigate this new normal. One is dealing with the unpredictability of my body/brain. Things will be basically fine, with only the mildest of symptoms, for a week. Then with no obvious reason the brain will cloud up, many tasks become impossible, and I just have to adapt/wait it out. Which may be for an afternoon, or for days. I’ve learned that I can do more things foggier than I thought I could, but it makes high-stakes, time-specific events (e.g. important talks) very stressful, because I can’t count on thinking clearly at moment X.
It also makes deadlines hard. Like most people, I use deadlines to self-motivate, and also to avoid spending more time on some tasks than I want to—e.g. syllabus-writing or class prep or paper comments. But if you can’t count on being able to use a planned chunk of time to meet a deadline, then you have to do things earlier if you want to be sure they’re done. But if you do them earlier, then you (or at least I) spend more time on them than I would have if there was a deadline. I am sure this is solvable, but I haven’t solved it yet.
Unpredictability makes momentum hard, too. I’ve always been a morning writer—get some time in before the day really gets started. Part of that is about routine: so much of what is challenging about being an academic is finding all the tricks to get yourself to work consistently with few short-term external pressures. But if you can’t count on working during time X, it becomes much harder to establish that momentum where writing becomes an automatic part of the day. So I’ve felt really unable to get into any kind of consistent work groove. Everything feels effortful.
To get to this point of semi-stability, I’ve introduced all sorts of time-consuming, life-constraining practices. I’m super careful about getting enough sleep, about exercise, about meditation (proven cognitive benefits). I’ve eliminated gluten (don’t ask), most alcohol, and am eating super-healthy. I have a therapist, an acupuncturist, not to mention all the traditional medical specialists. I feel like I devote 30% of my time to keeping my body running. Maybe I don’t need to do all the things I’m doing, but I don’t know what’s safe to eliminate. And it still takes very little—a night of poor sleep, or one day of overdoing it at work—to really derail things.
So I guess I’m frustrated. Grateful, when I look back to how I felt in February or March, and hopeful that the generally positive trend will continue. But mostly sick of being hyper-attentive to my body. I know lots of people with chronic conditions live like this, and lots are in much worse shape than I am. But I am still hoping that there will be a day when keeping myself functional feels like less of a constant effort. In the meanwhile, I’m trying to remember, trite as it may be, to enjoy each day.
Last time I wrote, about a month ago, things were bottoming out with the brain fog. My notes say things like “consuming, awful…sense-dominating” and “want to tear [my brain] out of my skull.” Good times. Then came a week or so of intense fatigue, where even lifting my arm from my position in bed took enormous effort.
The good news is that things have improved very substantially from that point. Yesterday I ran for thirty minutes, walked for ninety, took a multi-hour trip to Ikea, dragged a whole bunch of furniture upstairs, and then spent several hours making chili. It was fine. The fog has improved, too. It’s no longer something that is like constant pain, always present and asserting itself regardless of what I’m doing. Now, if I’m not doing cognitive tasks, it’s mostly around the edges—an occasional sense of spaciness, or wooziness, almost.
That said, my cognitive capacity has not fully returned. I am still struggling to read complex texts. This kind of writing is okay, but constructing an argument, or synthesizing literature, is hard-to-impossible. I have been trying to revise a thousand-word essay for days. I have trouble following abstract lines of thought, and—I don’t know how to describe this—it’s like my working memory is not great. If something is expressed in a long and complicated way, I lose the first part of the explanation by the time the second part is done. Cognitive overexertion also gives me a sort of mental hangover—like the lingering feeling you get after staring at a screen for eight hours, but now it happens in one.
In the last six weeks I have been throwing everything I can at this—conventional, alternative, lifestyle, dietary. There are lots of things to try. But what it comes down to is that over the last fifteen months I have experienced many things that commonly have cognitive effects—cancer itself, surgery, radiation, chemo, chemically induced menopause, endocrine therapy, thyroidectomy, stress, anxiety—and those effects are probably not coming from one single thing. (Timing still makes me think that thyroid is playing an outsized role, though).
I have learned a ton about what is called cancer-related cognitive impairment, which is extremely common—and not limited to “chemo brain”—yet only recently getting attention. I have learned about hypothyroidism, and the high level of treatment dissatisfaction among patients, despite doctors seeing it as an easy problem to fix. I know more, and I have a strategy for moving forward.
The fact that I was pretty fully cognitively functional for five weeks in December/January—possibly not 100%, but able to do academic writing, which is pretty much what I care about—makes me hopeful that this is not permanent, and I can regain that state with the right combination of chemicals and behaviors. But I also know that steps forward can be followed by steps back, and I’m hesitant to count on my future capacities.
A Book Recommendation
In the very worst period of this block of time, a book arrived that I had forgotten I preordered—The Invisible Kingdom: Reimagining Chronic Illness. I bought it last fall after reading the author, Meghan O’Rourke’s, 2013 essay in the New Yorker, “What’s Wrong with Me?.” Like O’Rourke, I have Hashimoto’s disease, a common autoimmune condition in which your body attacks your thyroid—though her autoimmune issues go well beyond that. But really I just wanted to read more about her experience, and her sharp analysis of the struggle to live in a body that isn’t working for reasons no one understands.
Well, it was the right book at the right time. I consumed it in a day, despite the fog, and felt such a sense of recognition. Because while the book is about her own fight for diagnosis and effective treatment of a set of complex, disabling, autoimmune disorders, it is really about the experience of trying to find a livable solution to a bodily problem that falls through the cracks—of suffering that goes unrecognized, because it’s invisible, unmeasurable, not easily diagnosable, predominantly female, and not under the guise of a single medical specialty.
I don’t feel like writing a full review of the book now, but as I’m working my way back to more complex cognitive tasks I think I’d like to return to it. But for now, let me just recommend it highly to anyone experiencing a chronic ailment that is not well-addressed by the medical establishment—whether that be autoimmune, cancer-related, or something else entirely. Part of the frustration of this sort of condition is the problem of recognition—because internal experience can never be fully shared, and because medicine too often treats “difficult to diagnose” (or treat) as “not real,” or “not important.” O’Rourke’s beautifully written, scientifically informed memoir of her long and painful experience of not being seen ironically made me feel seen indeed.
It’s been a while since I’ve written. Unfortunately, that’s because things have been worse, not better. After six weeks of being pretty functional, I am now up to five weeks of bad and worsening brain fog. For the last two it’s been pretty incapacitating.
I am on sabbatical, so for a while this was easier to manage than it would have been otherwise; I didn’t have to figure out how to somehow limp my way through classes. But about a week and a half ago things came to a head. I had to cancel a couple of talks at the last minute because I simply couldn’t make sense even of a talk I had already written out. I could read it aloud, but there was no way I was going to be able to answer questions about it.
This was really, really, hard to do. I hate not following through on commitments. But it also made me realize I needed to clear the decks for a little while. With a book coming out, I had a bunch of talks scheduled. So I cancelled a podcast, two more upcoming talks, and a month-long (work) trip to Paris in April.
So the deck is clear for this week, at least. I have an away message on my (alarming backlog of) email. I’m not facing the immediate stress of having to pretend like I can string together coherent thoughts and wondering how obvious it is that I can’t. Or the exhausting effort of working extremely hard to fight through the fog to accomplish very basic tasks.
I’m trying to figure out how to accomplish some limited amount without significantly upping the stress level, which seems to make things worse. And to manage the present without closing too many doors for the future. And, of course, to pursue the medical question of why this is happening and how to make it better. Writing about it is hard when things aren’t great and I don’t really feel like being all that public. But it has also been really helpful in navigating back to reengagement with intellectual life. So I’m testing the waters, as I muddle my way through this dark period.
(P.S. Several folks have reached out to check in, which I appreciate although I have not been great with responding lately. Hopefully, I will reply eventually.)
I started reading about the last seventy years of pharmaceutical regulation because I wanted to understand something about how the current system of drug pricing—oriented toward a value-based model in which price is (theoretically) based on the value of the additional (quality of) life the drug provides—came to be.
That led me into what the pharmaceutical industry was like before the current era—up to the 1990s or so. I learned a lot about regulatory debates over drugs in the postwar era, and the (failed) Kefauver-era effort to lower the price of drugs, which set the stage for what would become a repeated pattern of failure.
This is all from Dominique Tobbell’s Pills, Power, and Policy. The final chunk of the book covers the mid-60s to the present, and covers drug company alliances with academic medicine, regulatory reform efforts of the 1970s, and finishes with an epilogue that touches on the Hatch-Waxman (1984) and the Medicare Prescription Drug Act (2003), both of which illustrate how the same politics continued to play out.
The whole book is just terrific if this is up your alley. Here I want to highlight two more things that stood out for me. (Increasingly, I find that I’m reading this through the lens of a potential next project—not about the pharmaceutical industry specifically, but about how our ideas about the appropriate way to govern markets have evolved, of which this is one very interesting case.)
1. The importance of the states. One of the repeated struggles in drug regulation has been over substitution of generics for brand-names: should it be allowed; if so, by whom; and under what conditions. What tipped the balance toward permitting substitution—which for a long time, was not permissible—was state action. Out of concern with Medicare costs, state legislatures started acting on their own, and by 1979 40 states had permitted it.
Similarly, in the 2000s, states started using comparative effectiveness research to create preferred drug lists as a way to control costs—and drove new support for such research effectiveness research at the federal level. I’ve written a lot about policymaking, but little about state-level policy (one exception: state efforts to encourage university-industry research centers).
This is an important reminder of how central states are in setting the rules governing business. It brings to mind other examples: the role played by state attorneys general in shaping antitrust, for instance, or the state-level regulatory competition that helped credit cards take off. As I’m thinking more about “what is this a case of,” I want to keep this in mind.
2. The ACA as turning point—or not. The book focuses mostly on the 1950s to 70s. But it closes with a long and fairly detailed epilogue on the 1980 to 2010 decades. It uses the Hatch-Waxman Act and the Medicare Prescription Drug Act to show continuities in political alignment, even as the healthcare system grows and changes: brand-name drug manufacturers aligned with physicians, especially academic physicians, and against consumer groups and generic drug manufacturers.
Tobbell highlights how these politics were changing by the time the ACA was passed in 2010, just before her book was published. In addition to the growing role of the states, insurers had become a much bigger player in prescription drug politics (where they had historically been less central), patient groups had become more important (though their interests were not always unified), and there was more fracture within the medical community (with academic physicians remaining most aligned with drug companies).
In some ways, the development of the ACA played out in ways not so different from the past. Pharmaceutical companies threw their support behind a version in which they made some concessions, but also got access to many new customers. Most critically, they avoided any government-negotiated prices that could have served as a form of price control.
What is interesting is that while Tobbell paints this moment as one in which the politics of pharmaceutical regulation might be at a turning point (though she certainly is cautious about this possibility), in which more interests might be aligning against pharma, it’s been over the last decade that prices have really exploded. As I learned recently from Laura Halcomb, who is writing a dissertation on the topic, today pharma justifies these essentially unjustifiable prices mainly through the massive patient assistance programs it has created to help those who cannot access five- and six-figure drugs.
I’ve learned a lot from this sporadic exploration; I am not yet sure whether I’m going to return to the question of pricing in the present or to move in another direction. One thing this book reminded me is the extent to which the past is really my wheelhouse. I started exploring this less because I wanted to start a project on the pharmaceutical industry, and more because I was trying to start from a very unpleasant firsthand experience and use it to meander back into engagement with academic research.
What I really got from this book is a reminder that there was a very different way of thinking about the governance of business in the 1950s—one that was gradually denaturalized during the 1960s and 70s—and that I am really drawn to better understanding that “before” and what happened to it, with an eye toward thinking about the present moment, in which our current model of thinking about governing business appears (to me at least) to be a failure, yet it’s not clear what would replace it. Writing through some of these thoughts—which are not necessarily about pharmaceuticals, or healthcare, at all—may be my next step.
I really don’t want to be writing this. I want to be reading obscure things about drug regulation and thinking about how our ideas about governing business evolved and toying around with next projects. But instead I am tethered to a body that won’t go along with my wishes.
I could catalog symptoms, but long story short, it’s been another rough week. I had a few good days, but my life still is completely organized around managing the state of my body. That’s both in the day-to-day (how can I use the capacity I’ve got to get work done/make it through the day), and in terms of priorities (tracking down specialists, going to appointments, being very careful about what I eat and how much I sleep).
Part of dealing with cancer is accepting a new unknown. When you are diagnosed, and given a prognosis, the future collapses into multiple timelines. In some of them, you are treated and then there’s an “after” and life returns to “normal,” with unpleasant thoughts of illness and death banished, hopefully for decades.
In others, there is a rapid foreshortening. The old vision of the future disappears, replaced by an abbreviated period of decline, and then death. Of course these timelines exist as possibilities for the healthy, too, but cancer makes the darker ones bigger and harder to ignore.
Some of the art of living with cancer, or after cancer, is learning to ignore the dark ones, even as you try to use them as a reminder to live in the moment, to not take things for granted, to seize joy where you can find it.
Yet as I deal with my current state, I feel like once again the mix of timelines has changed. The “back to normal” timeline recedes even as I try to hold onto it. The darkest timelines aren’t front of mind, even though I know they’re there. Now a spotlight shines on the murky middle. This “rough patch” has lasted almost four months, though there have been stretches—alas, not in the last two weeks—where things have been quite a bit better. But what if this is as good as it gets? What does my life look like then?
I guess I have always lived in the future as much as the present. Planning, setting goals, daydreaming. Academia encourages thinking on a long timeline—looking six months out, or a year, or five years. Right now, though, I don’t know what kind of future I’m looking at, and it’s very unsettling. Is there a long period of recovery, then a return to something close enough to “before” that I can return to my prior life? Or is that truly gone, and I need to make some kind of new life with a new body?
Of course I can’t know. All I can do is deal with the present, keep looking for ways to make it better, and try not to close off too many possibilities for the future.
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.