I saw this gem on a glioblastoma support site this afternoon, and it was something I felt uniquely qualified to answer (also, if I’m writing, I’m not wondering if it’s allergies or COVID):
Q: How did you all tackle fitness during recovery from your surgery? How about during radiation /chemo treatment?
A: So, when I was in treatment — and we’ll discuss some of the details of treatment here, quickly — I had two basic goals: survive treatment, and make it look easy. My goal in this wasn’t to make “inspiration porn” that able-bodied folks so frequently turn sick peoples’ lives into; it was so that the next folks in line could say, “Hey, if that moron can do it, anyone can.” I’ve since learned it’s not quite that simple, and I had some genetic factors working in my favor (of course, the ideal genetic factors would be not to have a genetic predisposition to cancer, and, in fact, to be more or less normal, but you take the good with the bad).
First of all; this advice is only really applicable to glioblastoma patients who undergo standard of care without the Optune Device (not because I dislike it or think it’s ineffective; it was still experimental when I was in treatment, and wearing a device that you can only take off when you’re in the shower probably creates some issues that could be better addressed by someone who actually has first-hand experience), with weekly infusions (of an experimental substance, in my case, but there are certain immunotherapies, chemo, or experimental treatments you may be a better candidate for) of an experimental, extraordinarily unpleasant chemo agent (MRZ). Infusions are the standard thing most able-bodied people think of when they think of “chemo” — you’re in a large, cold infusion center, with an IV hooked up to a machine that pumps toxins into you, in the hope that the cancer will die before you will. You can get a port-a-cath (a semi-permanent catheter) installed, which saves you the trouble of getting an IV installed each week, but it has drawbacks (such as making you susceptible to opportunistic infections, needing special care and attention, and requiring you to go to the infusion center to get it cleared once every couple of weeks, etc.). I didn’t have one of those (not for any informed reason, just because I’d had neurosurgery, and installing a venous access device required another surgery — at this point, I’ve had three neurosurgeries; unless my heart explodes, I’m not doing any more surgery), again, if you elect to get one, this advice may be less-than-totally-applicable to you. My treatment — which included Standard of Care (at the time — remember that thing about Optune being experimental when I was in the hot seat) was neurosurgery, a 4–6 week “break” (you’ll want it, because you’ll want that time to heal from surgery before dousing yourself in toxins), 6 weeks of chemoradiation (daily radiation and oral chemotherapy, with, for me, weekly infusions)(temodar — the front-line drug for GBM, is a repurposed metastatic breast and skin cancer agent that’s taken orally at night)(chemo can be what most people think of; it can also just come in massive horse pills that make you vomit for hours if you don’t take zofran beforehand), a 2–4 week break, and then 12 “cycles” of chemo — four weeks, consisting of five consecutive days on oral chemo (I found out halfway through treatment that it’s not extraordinarily important when that takes place, just that it be five consecutive days on), 23 days off — I got weekly infusions in Weeks 1,2, and 3 (with week 4 “free”)(although, by that time, understandably, I was pretty tired and hungover from treatment). Which isn’t applicable to everyone, everywhere, just my standard way of saying, “This was my treatment, this is what worked for me, I’d recommend it for most people in a similar situation, but you can feel free to ignore this advice or adopt it to your situation.
With my usual legal, moral, and medical butt-covering in place, let’s get on with getting in shape, survivor-style. Again, I had the stated, honest goal of trying to inspire other people to beat the odds, and, of course, the real reason: vanity. You’d be amazed at how you will respond when you become aware of all your own mortality. I’ve always been into fitness; albeit that lapsed a bit in grad school, and, even though I wasn’t diving into the pool while wearing a shirt; I definitely wasn’t happy with my looks at the time. And, after you see how the conversation changes when people find out you’re terminal, you work hard to conceal that. In other words; if you only had 14–24 months to live, you’d be amazed at what suddenly becomes a priority, and, in my case, keeping a careful record of my descent into the valley of death (writing) and getting that chiseled jawline became top priorities. Unbeknownst to me at the time; that second goal might’ve given me a new lease on life. See, what no one tells you before treament, when the statistics are massive, monolithic, and uniformly grim, is that brain cancer treatment is unbelievably unhealthy, and very few of us complete it for health reasons. You are, in effect, stabbing yourself, poisoning yourself, and sticking your head in the microwave, all in the hope that the cancer gives up before you do. Obviously, I’m dramatically oversimplifying the process, but not as much as healthy people might think. The first, critical step to surviving cancer is, obviously, surviving treatment. The key to that one is staying as healthy as possible. Simple enough, right? Before we answer that one, let me ask you, “What constitutes a healthy diet?” (I’ll give you the answer very shortly). Answers vary widely from culture to culture, let alone person to person (despite what Jordan Peterson and his crazy daughter might claim, an all-beef diet isn’t helpful if you want to make it past 45)(if you’re going in for that, you might as well toss in an unfiltered pack of cigarettes a day). Chances are, you’re Googling it now, and getting different, conflicting results.
We’ll return to diet in a bit, first; the question I initially saw was about the new limitations on activity (you’re not supposed to run around like a lunatic if there’s a danger you’ll raise your intracranial pressure and kill yourself)(some folks reading this are likely to get COVID, with neurological complications, and encounter this situation first-hand). And, yeah, you are going to have to take it easy for the first 4–12 weeks after neurosurgery; for similar reasons that Grandma shouldn’t train for a triathlon immediately after hip-replacement surgery — you’re likely to be off-balanced, injured, and you do not want to worsen a bad situation. Having said that, I’d recommend taking up walking — of varying lengths, and intensities — as a good alternative exercise, working your way back to the gym. The concept of going for a walk that could be anywhere from a few blocks to a few kilometers, depending on how you feel is a useful tool to embrace, because there are going to be days in treatment when you simply feel tired and strung-out, and days when you actually could hurt yourself. I found out the hard way (a severely sprained ankle) that you don’t want to find the line between those two, and, if you feel tired, just go for a long, fast walk (or as fast as you can go). However, when you do feel good enough to go back to the gym, hit it; but treat it as if it’s a recovery work-out (because it is). And, I’d advise you to set concrete goals for yourself, and then taylor your routine to those goals (admittedly, my goals were pretty much just “I want to look like Tom Hardy from Dark Knight Rises,” because, after three major, dangerous surgeries, and numerous dousings in experimental chemical baths, I’m pretty much already a supervillain)(also, as a tall, lanky guy, standard bodybuilder routines just weren’t getting me the results I wanted). And then hit the gym as hard as you can; bearing in mind that you will want a variety of “back-up” routines for your off days; and give yourself permission to take a day or two off as-needed. You’ll see results (I put on a few kilos of muscle), but, more importantly, you’ll actually feel it. When you’re metabolizing poisons faster, you feel noticeably more comfortable. Admittedly, I was getting poisoned on a weekly basis, which is a much faster tempo than most survivors encounter, but I did notice a dramatic increase in pain and discomfort if that day or two off turned into a week. So, yeah, there’s a dramatic incentive to go to the gym, if only because your oncologists will feel more comforable putting you on more aggressive treatment.
Now for the tricky part; diet. As I mentioned, every culture has their own, unique version of the food pyramid (I love Greece’s, which puts red wine and olive oil as the most-needed nutrients)(I do not know if Greek nutritionists recommend Gauloises and boiled coffee, too; but one hopes), which makes things tricky. This is further compounded by everyone writing books about anti-cancer diets, or curing cancer via diet. I get asked about the keto diet once a month. My usual response is; if cancer could be cured with diet, it would not be a dangerous disease (also, for everyone out there feverishly composing e-mails about how their boyfriend’s aunt’s roommate was cured after reading cancer; I’d point out that, biochemically, “starving cancer” is like treating lice by sticking your head in a plastic bag and seeing who can hold their breath longest)(which, I suppose, makes it like most conventional cancer treatment — hurt yourself, and hope the cancer gets hurt more). Having said that; there are plenty of things you can do that will make life on chemo far more tolerable. For starters, you’re almost certainly not getting enough fiber. At the height of treatment, I was eating 7–12 raw (or dried) fruits or vegetables day (that’s not servings, that’s actual vegetables, which is a much higher standard). I once estimated that I literally spent 90 minutes a day just chewing. It was not enjoyable, to say the least. Why would I subject myself to that amount of fiber? For the same reason I was going to the gym regularly — if I didn’t, the chemo would punish me, in the form of the biggest survivor complaint that no one will tell you about until you’re debating the merits of IV or permanent venous access: constipation. You can take laxatives to deal with that, but that just made life a little too exciting for me; so I stuck to grimly gnawing on carrots while watching Futurama. But it’s all up to you. After those, I got 20–40 grams of protein a day (the ideal goal being in the 50 gram range, but, after a dozen veggies — even if they’re great, like mangoes or tomatoes, and not hateful, like celery — it’s hard to get anything down), and 6–8 L of water (the recommended amount for an adult is 2–6 L; but you want to keep everything filtering through your kidneys and liver at a high rate)(on temodar nights, I was literally waking up every couple of hours to get a glass of water and/or pee). After those lofty goals are met? Anything’s on the table. If you want a dozen doughnuts, after an hour in the gym, an hour chewing, an hour drinking water, and an hour in the bathroom, go for it. Hell, try the Big Lebowski drinking game, if you’re up for it (you won’t be if you’re spending this much time focusing on your health; just because you literally won’t have enough time). The world is your take-out menu (okay, in a post-COVID world, that might not be the greatest metaphor, but you get the idea).
Another thing to keep in mind as you try not to look all wizened and disease-ridden is, chemoradiation wears you down. I’ve heard from other GBM survivors that radiation is worse than chemo, but it’s all by comparison, and those infusions hurt like hell. Either way, there’s is a nasty aspect of cancer treatment in that it does get harder and nastier as they continue (to all my GBM friends who might read this; the good news is; if you can get past five or so “maintenance” treatment cycles without a bump, odds are that you have the coping skills to make it through the rest of treatment), so, you might want to consider caffeine, antidepressants, and other less-than-traditional complementary treatments to keep going. Or just take that long, leisurely stroll (or short, quick jog, depending on your preference). The horrible thing no one tells you until you start going to support groups is, this is a marathon, not a sprint. When you’re tired of staying healthy, you’re tired of life.