This is a combination of a writing prompt from Gryt; “What advice do you have for newly-diagnosed survivors,” and another question I see a lot, “How do I remain positive throughout treatment?” Like everything else involving cancer, these two questions have surprisingly complex, lengthy answers, and they’re intertwined (admittedly, that’s from my skewed perspective, but, hey).
So, a bit of background that might help. I have survived three different brain tumors. I am not making that up or exaggerating it. I’m like the person who gets ALL, CML, and lymphoma (I’m aware that ALL and CML are linked, we’ll get there). In 2002, I was diagnosed with neurocytoma after an (unrelated) car crash required a CT scan. It was surgically resected (that’s a fancy way of phrasing “trepanation”). After that, I was tagged and tracked, so to speak; the longest I’ve gone between MRIs is 14 months. In 2013, a routine scan showed a low-grade astrocytoma (I didn’t know that’s what it was until after surgical resection, a year later)(thanks to the privatization of healthcare in the US, pre-existing conditions require you to wait a certain amount of time before a health insurance company will cover them)(but let’s talk about how single-payer health insurance is a disaster in shithole countries like France and Canada). In 2017, that astrocytoma came back (as astrocytomas tend to do) as a grade 4 tumor — glioblastoma. I once calculated that there are probably 60 people in the world with a similar medical history per year; if the ABTA’s stats are accurate (admittedly, they probably aren’t; most health statistics are a decade old)(in medicine, anything older than five years is pretty much obsolete), only 24 of us are still around after that year. If it takes 10000 hours of study and practice to become an expert, I’ll happily submit that, at this point, I am an expert in surviving the unsurvivable.
I remember one dismal morning during chemoradiation, when I had to call my insurance company and haggle with them about some prescription or another, being tempted to put it off a day, then realizing that the delay in care and meds in the bureaucratic world of modern medicine might translate into a week or more without prophylactic antibiotics, and realizing I didn’t even have a 24-hour margin of error with my life. And then realizing, this would be my life, forever. A life at the margins of society, where it took me five hours a week just to arrange for medical treatment. A life where suicide was rendered completely redundant just by putting off a phone call. Who would want a life like that? The worst part about cancer is, to paraphrase Bill Watterson, that things are never so bad that they can’t get worse, and that’s a horrifying and nihilistic realization to have at 33. Then I realized I just wanted one solid “win” against a damned disease that’s plagued me since before I could vote. After that, I made the call, and each day started getting a little bit easier. Life will never be easy or happy, but you can make the horror and uncertainty manageable, which brings me to my first point:
- Just make it to the end of the week. That’s it. Don’t worry about the week after, or the rest of your life; just make it a good week. Once you get that skill down, the other details start falling into place.
After that week, you can worry about the next one, then the next month; your world expands slowly, with your life expectancy. After your first clean scan, your morale improves tremendously. My advice to everyone trying to stay positive is that every survivor starts out scared, angry, and confused (it’s much like being born, except slightly less blood is involved); don’t fight it. You don’t start with a good attitude (unless you’re delusional and/or doped to the gills)(the latter is a distinct possibility if you’re just out of neurosurgery), you earn it a little bit at a time.
Another breakthrough occurred after a particularly nasty infusion (I was in a clinical trial for a chemo drug) left me shivering and in pain. If you’re not familiar with the medical term “neuralgia,” I know you’ve experienced it at least once or twice in your life. It’s that sensation you have when your foot “goes asleep.” It’s that nasty pins-and-needles sensation, and it’s not an uncommon side-effect of nastier chemo regimens (thankfully, that was a very temporary side-effect that’s let up since completing chemo).
As I lay in bed, sweating and shivering; feeling too physically horrible to sleep (this was before I learned about CBD)(also, check with your oncologist; I’ve since learned it can “disable” certain chemo agents), I realized that, bad as I was feeling, all my traitorous, cancerous glial cells were probably feeling worse. The next infusion, I slept like a baby. Which brings up point #2.
2. All the pain, suffering, and horror suffered by you is also bestowed upon your disease (cancer is, after all, just a rogue group of cells that decide not to play by the common rules governing multicellular life forms)(that’s an oversimplification, but it’s still way more scientifically accurate than the statement that windmills cause cancer). Unleash your inner masochist.
That was another turning-point revelation. The infusions never stopped being painful, but the pain was bearable. After that, my mission was getting more chemo, more pain; because I knew if I had it rough, the glioma cells had to be getting it, too. To quote Peter O’Toole on pain, “The trick… is not minding that it hurts.” Each infusion, each cycle of treatment is a Stephen King novel unto itself, but, at the same time; each cycle brings you one step closer to killing something that may kill you. Your job — and it’s a simple-yet-challenging one — is to make sure you don’t flinch first.
There’s a lot of little morale-boosters I used that I left out because they may not be applicable to all survivors; such as making a nuclear-war-themed playlist for radiation treatment, or prostituting yourself for any study or clinical trial that will have you (if you have a disease currently considered incurable, I’d advise everyone to start looking into experimental options five minutes after diagnosis; if you wait until you exhaust conventional options, most researchers won’t want to take you on). I suspect that, ultimately, there are as many successful survival strategies as there are cancer survivors, and everyone’s path will be unique to them. The hard part about survival and the treatment process is that there are no real hard, universally applicable rules, other than to take the most aggressive, efficacious treatments available, and never, ever settle for second-best.