Gryt Health recently asked users to describe “chemo brain” to people who are completely unfamiliar with it. Then I saw an interesting comment/post/Tweet/something about opening your eyes at 6 am and looking forward to bed-time; which seemed to nicely encapsulate it. Then I realized, I’ve been doing jolt-alert insomnia for the past week (which also explains my output — or lack thereof), and I had, again, inadvertently become the subject of my own essay. Either that or narcissism combined with insomnia to inspire me (that happens more often than you’d think).
So, to start, let’s discuss how to recreate chemo-brain in yourself.
Step 1. Take a cross-country red-eye flight in an uncomfortable fourth-class passenger freighter. I hate to name names, but an ideal candidate for this one rhymes with “Spirit Air.” Ideally, there will be a slightly fussy baby on-board, and the seats will be just a few centimeters too small for you to relax in. The ideal here is, you can close your eyes, get drowsy, but never actually fall asleep.
Step 2. Get your baggage, and get a taxi home (or wherever your destination is) just as the sun is rising and your Circadian Rhythms kick into “Daytime” mode, so you can’t really fall asleep. Spend the rest of the day groggy and somewhat hung-over (without the fun of drinking and/or staying out all night). Retain enough awareness to know you should not drive (or leave your home, really) or make major life decisions, but not enough to know that slicing vegetables in your condition is also not a good idea. You’re shooting for that sweet spot of, “Too tired to be productive or intelligent,” but, “Too alert to go back to bed.”
I bring all of this up this particular week both because of the Gryt prompt, and because the weird, wake-up-at-4-am-and-not-get-back-to-sleep thing was a major side-effect of Temodar. The major side effect of Marizomib (the other chemo drug I was on) was to go in bed in pain and sort of come to 14 hours later, with horrible muscle pain. And wanting to go back to bed, but I was too alert and awake to do that.
I realize that different people are going to experience different chemo side effects based on which chemo they’re on, which treatment cycle they’re on, etc. I know some people who have had dangerous allergic reactions, people who have been rendered permanently bald (side-note: I didn’t really notice much hair-loss from chemo; but radiation left me with big, weird, bald patches that did not regrow until I was off chemo)(which makes a little sense, since Marizomib isn’t designed to kill cancerous cells, it stops them from growing back), so pain, nausea, and sleep disruption seem a fairly small price to pay.
Local cancer support groups are critical, because they help you find a “cancer mentor” for an experience that’s beyond comprehension for healthy people. At the same time, they are occasionally horrifying. When I introduced myself with a brief bullet-point recap of My Life, November 2017 to February 2019, one of the first, terrifying questions was, “Did they take you off of chemo because it was no longer effective?” No. No, thank Gods, it was far more effective than promised, but you can’t do chemo forever, for similar reasons that long-term drug abuse is frowned upon (if you think the opiate epidemic is scary, just wait until the Baby Boomers hit that 40% cancer occurrence stat, and the nation grapples with a deadly Methotrexate and/or Metformin epidemic)(BTW, I’m aware that Metformin is a common diabetes drug; it’s a common component of most chemo cocktails — which brings up an interesting side-note: I suspect the future of cancer treatment will be repurposed and off-label drug uses)(that’s hardly an original thought; Ben Williams used this approach to treat his glioblastoma in 1995). If you think alcohol is hard on the liver, I can’t imagine what repeated Avastin infusions will do. I certainly can’t imagine spending two weeks of every month (cumulatively) waiting for the next socially-permissable nap-time would look like (apart from it being exhausting on a level I can only begin to appreciate because I’ve actually lived it).
Which is a little ironic, because, recovering from chemo involves pretty much mostly sleeping as much as you can, and going to your physical limits under controlled conditions (i.e. going to the gym). Both of my parents recently had serious physical mishaps — they’re both healing, but both of them pointed out to me that they never realized how exhausting it is just to heal. “Exhaustion” isn’t a bad way to discuss what to expect from chemo brain, but it doesn’t really capture it.
People with chronic illness use the concept of “spoons” (explained here; I’d link to the original article, but I don’t want to turn my ad-blocker off)( https://www.youtube.com/watch?v=a2NGaG8mhjU), and that’s a sort-of way to talk about chemo brain… except you’re grumpy, you can’t remember where you put your damned spoons, etc. And it’s not a totally-accurate summary of chemo brain because, when you’re completely out of energy and “crash” (it’ll happen a few times on chemo), we all get it. It’s like you’re going to drop dead in ten minutes, and you need to crawl into bed right now. Fairly simple and easy to comprehend, but chemo brain is more like you have half-a-spoon left, and you have just slightly enough energy to do this or that task.
That is the chemo brain danger sign, when you feel like you can do it, if you just take a ten minute break or get a cup of coffee, first. That is the sign that you’re about to do something fatal in your distracted, chemically-induced fatigue state. Fortunately, I’ve had enough experience with red-eye flights to know when I’m in that, “Maybe I can do it,” that’s the first step on the way to the ER trying to explain why I thought, in my sleep-deprived mind, that cutting the chicken with a butterknife was a good idea. Look at it as changing a lightbulb with a step-ladder that’s 5 cm too short. You can stack things on the step-ladder (or put it on the table), but that’s going to lead to the ER.
Ironically, I’ve lived all of my adult life with “chemo brain,” I just didn’t realize it. I knew it as “severe brain damage,” from my first neurosurgery (a nine-hour one). For everyone who’s known/met me since 2002 and concluded that I was more-or-less unimpaired, I’d quote you my neurofeedback therapist, “Brain damage is extremely subtle.” (He was making a point that a disproportionate amount of the general public — something like a quarter to a half (higher if we include paid positions in the White House) — has some form of clinically-detectable brain-damage). Or, to quote you my mother, “It sharpens some things, and dulls others.”
So, chemo brain right now for you, the able-bodied person. Where is your birth certificate? Social Security Card? Passport? I’m sure most of you are reasonably certain you know where they are (there’s a few of you that are now desperately ransacking your “junk” drawers in the kitchen/office praying they’re there), but, that millisecond it took to redirect your attention to your memory, and then arrive at, “No worries; I know where they are,” is a very brief little flicker of chemo brain. Add fatigue and irritability into it and you can understand why most of us can’t drive on infusion days.
In short, it’s that weird mental state where you’re not crisp enough to do anything productive, but too alert to just go to bed and sleep it off (and, according to one of my “cancer mentors,” it’ll take at least a year to do that). Or, at least, that’s my experience with it, your mileage may vary. Stress and exhaustion make it far worse, so I’d recommend avoiding the two while you’re in treatment (which is ironic, because there is nothing more stressful than cancer treatment).