Ask A Survivor
Q: Are you in treatment, or in remission?
A: Tragically, health is not a binary issue. It’s a sliding scale. I am currently not in active treatment, but I’m also not in remission.
Q: Why?
A: For some technical reason, glioblastoma never goes into remission. I’ve been utterly terrified to ask my primary neurooncologist, Head Warlock in Charge(HWiC), directly. Like any dark wizard, he’s subtle, and, when I asked about that, recently, he said, “We treat these diseases as if an occurrence is inevitable.”
Q: What does that mean, exactly?
A: Probably that the last summoning of the dead for divinination was inconclusive. In all seriousness, he’s the only physician I’ve met who flatly refuses to preface his answers with the phrase, “In my experience,” so, usually, it means that he wouldn’t feel giving a presentation about it to the Institutional Review Board.
Q: Doesn’t that lack of confidence worry you?
A: Actually, no. With orphan diseases, Dunning-Kruger runs deep, so, the ability of a clinician to identify what they don’t know, and slowly back away, is an indicator of a higher quality of expertise, experience, and imagination. These are all critical qualities in an oncologist, because you don’t want someone who boldly predicts the future, you want someone who can skate to where the puck is going to be.
Q: Does he know you refer to him like that?
A: I’m 99% certain the man has a palantír in the back office. In all seriousness, I’ve never explicitly told them I joke about them using black magic. That’s both because all of my oncologists are so intuitive and well-informed that I suspect they know I joke about them on the Internet, and because I don’t want to wake up a newt.
Q: Have you tried any alternative therapies?
A: Skipper, I went in for both Standard of Care (SOC) treatment (SOC in 2017 — the guidelines were updated in the last two years), and experimental treatment. That’s not just alternative treatment, that’s extra credit. As for alternative treatments; I’ve spent time in an oxygen tent, and was promptly rewarded with a new glowing spot on my next scan (it turned out to be a false positive, but these things nag at the back of my mind). And, on the other end; I spent a night doing ‘shrooms with an ayahuasca guide (we didn’t do ayahuasca, because, y’know, vomiting is every survivor’s greatest fear, but the magic mushrooms were groovy), and it was like being in 1967. So, I’ve had some personal experience, and it ranges from “terrifying” (the oxygen tent scare), to “Almost Famous” (the hallucinogens), to, “Unbelievably Terrifying, Hallucinogenic, and Extraordinarily Dangerous, but Very Effective So Far” (the experimental chemo, which is not for the faint of heart). Ultimately, keep in mind that effective “alternative” medicine is eventually incorporated into established medicine, so, if it isn’t on PubMed, or in an FDA-registered clinical trial, there’s probably precious little evidence to back it up, and you might want to steer clear.
Q: And the psilocybin?
A: Is actually in a FDA trial (https://clinicaltrials.gov/ct2/show/NCT05403086). It’s worth noting that I was out of treatment when I ventured into a Jimi Hendrix Bootleg, and I was not directly involved in that trial, but I absolutely did my research beforehand, when it was in preclinical trials, which means there’s some initial evidence indicating it’s useful as a treatment. I also know from my formal education that it’s practically impossible to OD on hallucinogens — you can choke on something or walk off a cliff, but that’s why you want to do it in a highly controlled environmen. For extra caution, you can fast for the previous 12 hours, as I did, so the risks of vomit are minimal. However, your kidneys will filter it out long before most conventional hallucinogens become toxic, so, unless you have sever kidney disease, or can somehow store hallucinogens in your system safely from your kidneys, it’s a fairly safe bet.
Q: What about antioxidants?
A: That is, tragically, a very specific biochemical theory that’s never been thoroughly proven or disproven, and it describes the potential damage that oxygen can cause in a cell as it’s degraded from pure oxygen to its final, single oxygen atom (a free oxygen radical). It was used to describe one possible explanation for how and why our cells age and die, but it gets technical and complicated quickly.
Q: How complicated?
A: I’d honestly go to HWiC for that one, but I wouldn’t bank on an absolute answer.
Q: So, why are you so brave in the face of that sort of uncertainty?
A: That “brave face” is a very, very delicate illusion that’s Long Term Survivor 101. The folks who don’t learn how to put on The Brave Face don’t make it long, because panic is infectious, and medical teams and caregivers catch it from us. Also, incurable disease patients must be comfortable with uncertainty. When you’re diagnosed with an incurable disease, you get a series of increasingly disturbing medical briefings that make “uncertainty” look damned good next to the next most-likely possibilities. Seriously, it goes from, “Maybe that lump/scan blip is benign,” to, “Wait, that bad?,” to, “Honestly, what are my best options and best chances?” When your situation is upgraded from “Certain Doom” to “Uncertainty,” you’re just so relieved that you sort of accept and embrace it at face value.
Also, I still have a few wild cards in the deck that keep my uncertainty levels high — remember, uncertainty is my goal. First, very, very few people survive the first brain tumor. Surviving the third is so rare that I literally only know of one other person who’s done it, so, I’m already in Terra Incognita. Second, I got brain cancer at a relatively young age — 32. Which might seem inconsequential, but the average age of a newly-diagnosed glioblastoma patient is about 65 years old. The global life expectancy is about 70 years old, so, the idea that the average glioma survivor has a ton of time left, anyway, is deeply flawed. The statistics surrounding this disease are misleading, and, at the time of diagnosis, I was already an extreme statistical anomaly. I don’t know how that will play out, but it’s a known unknown. Finally, I was in a clinical trial for a new chemo drug, Marizomib (MRZ), which is just starting Phase 3 trials in the EU. Specifically, I was one of 72 people who were in the Phase 1C trial, where the researchers figure out the maximum dosage, so, I was dosed at a level that probably won’t be common even if this drug becomes incorporated into SOC. So, statistically, I’m in completely uncharted waters. Which is sort of terrifying, unless you know how horrible the well-documented aspects of glioblastoma are.
Q: So, are you in treatment, now? What are you doing about your cancer?
A: I get scans every four months. I’m on an antidepressant (Remoron) correlated with tumor suppression. I regularly take substances correlated with sensitizing glioma cells to chemoradiation (THC and melatonin, specifically), so that my medical team will have no problem zapping this thing if it dares come back. And, I’m managing my overall health so that my medical team won’t be reluctant to bathe me in Agent Orange, should it come to that.
