So, I was in “active treatment” — that’s the phase in cancer treatment in which you’re in chemoradiation (which is a whole different level of horribleness that I’ll discuss later), and it was active — I was getting infusions every week, three out of four weeks — for a year. To give you an idea of how grueling a tempo that is on a body, most of the leukemia and lymphoma patients I know get infusions every 2–4 weeks. To be fair, I have a far, far more aggressive and dangerous cancer than most Hodgekin’s patients (the pansies), and just finding a medical team willing to treat me as aggressively as was needed without giving up (according to a lot of online support groups, most of brain cancer patients get written off)(which, it turns out, is pretty much a self-fulfilling prophecy). And, simply surviving that level of constant poisoning requires immense amounts of activity and self-care (which we like to view as a pleasant, relaxing bath, when, in reality; it’s like shoveling snow — immensely boring, yet tiring — it’s getting to the gym, making time to see a therapist, and eating properly (before anyone asks, no, I didn’t do the keto diet, I just cut back a bit on sugar and dramatically increased my protein and fiber intake). But, all of this puts you in a proactive, near-ADHD level of hyperactivity (plus, chemo makes you so physically uncomfortable that even sitting isn’t much fun). Everyone I talk to wants to know if I got bored or tired during my “year off” (it isn’t a gap year, it’s cancer), and I have to point out that just keeping up with my ongoing prescriptions and insurance carriers took up 10 hours a week. We have disability insurance for cancer patients because, as it turns out, surviving cancer is pretty much a full-time job.
And then, suddenly, it’s over. Literally, it’s amost that fast. And then the real fun starts. The first week or so post-treatment is great, because you’re not being dosed with toxins, you can remember what happened a week ago, and you can start concentrating. Then the second and third week set in, and, even if you feel fantastic (and you’ll feel amazing just not being on a constant diet of toxins), you’ll start getting… bored. And anxious, because, after a year in full-on, “Let’s do this! Pump in the toxins!” mode, all you can do is wait, and see. And heal. You’re still incredibly damaged thank to a year of insane chemical abuse, even if you feel fine. You’ll get lots of patting on the hand and being told to take it easy. I even got a call the other week from the folks running my neuropsychiatric/neurocognitive battery basically saying that I should give my poor, beleaguered neurons a bit of a break and put my scheme to rejoin the working world on temporary hold, and maybe take a nap. Fuck that; I have a disease that only goes into remission rarely, and usually briefly. I fully intend to get out and live life to the very fullest… Except they’re right.
We tend to discount advice we disagree with, even if it’s coming from experts. I like to point out that I made it to the 16-month mark (median life expectancy for glioblastoma patients is 14 months) by religiously following the suggestions of my medical team… one of which is now that I should sleep and get some rest. This is particularly pertinent to those of us suffering from brain injury (and spending a year having my brains stabbed, nuked, and poisoned probably didn’t do me any favors in the IQ department), since, according to one neurologist I know, sleep is when the brain heals.
I was all too happy to brush aside this advice and continue my hyper-active cancerous lifestyle (after all, if it’s what saw me through multiple infusions, it can’t be all bad), until I got the bubonic plague (okay, so it’s probably just a bad head cold, but one that left me severely incapacitated). If you want to experience what modern chemo is like, it’s not a bad simulation — you feel like you have the Hangover of Doom, you’re utterly sapped of energy, you’re popping strange pills every 4–8 hours, and you know you shouldn’t leave the house, but it feels like a plague pit.
The unexamined life may not be worth living, but when your horizon is only the next treatment cycle (about 4 weeks, in my case), it becomes a necessity. Then you get the go-ahead for a 3 month planning cycle (the time between scans). Not much, but you can start scheming and planning and scheduling your life like a normal person. Then you get hit with the flu, and you’re forced to examine your inner demons. Sort of. 21st century life is still rife with distractions to keep us from getting too introspective. But it’s still a nasty reminder that, however much I might want to immediately leave my disease in the dust, I’m still far from healthy, and maybe taking a day off to sleep and enjoy the banal pleasures of Benadryl and television isn’t a horrible idea. Now, if you’ll excuse me, I have to go find my Vick’s Vaporub.