Q: How are you?
A: Apart from the leg that’s recovering from a recent bout with gravity?
A: And my fragile mental health?
A: And my ongoing gum decline.
Q: Yeah, that, too.
A: Oh, you mean the brain cancer! My incredibly rare, uniquely mutated, mixed-grade (probably), 95%+ surgically resected tumor?
Q: You are weirdly qualifying your cancer.
A: That’s because I just reached the six-year survival rate, and five years out of treatment with no new cancer, and I really don’t want people to try to mindlessly repeat my success with a “Waiter, I’ll have double what he’s having” approach — you want the right treatment protocol, with the right dosage to get to the right patient.
Q: But this is incredible news! You were supposed to die years ago, right?
A: So, like every other question pertaining to dangerous chronic diseases, that’s not a simple one.
Q: It sure seems simple, you’re either striding into the broad, sunlit uplands of vigorous, hearty life, or you’re making calls to hospice workers, right?
A: Traditionally, Western medicine is designed to subvert and delay that choice.
Q: But you were supposed to die in 2019, right?
A: Okay, initially, I absolutely pestered my oncologists for a life expectancy. And they evaded that question like Tupac’s killer did suspicion.
A: The word “Terminal” is highly specific, and contains both an objective and subjective component.
Q: Going on for a long time, here.
A: So, the objective part is that you’re diagnosed with an incurable, progressive, life-limiting condition. Which I was, in November 2017. The disease has not clinically progressed since, then, so, even the objective aspect of “terminal” is less applicable, in my case. The “Subjective” component is that we have less than a year of projected life expectancy, which, I really never had. My primary oncologist, Head Warlock in Charge, made it inescapably clear that I am not to consider myself, “cured,” and should continue with medically appropriate monitoring and intervention.
Q: What a killjoy.
A: Yeah. I don’t hire necromancers for their sunny disposition, I see them for their expertise in thwarting death. Anyway, what I can say, with six-odd years of experience, is that, for six years, I subverted the objective part of the “terminal” label.
Q: In what way?
A: Well, my cancer hasn’t notably progressed in that time, although Radiation Oncologist hinted, early in treatment, that some small cancer cells were still active, because the surgical team didn’t scoop out my skull like a Jack-o-Lantern.
Q: Kind of a weird thing to tell a patient.
A: That’s why she didn’t tell me, that’s why she simply hinted and let me fill in the blanks. Anyway, she was the oncologist who trained me to communicate with Dark Wizards, and who gave me a firm projection on life expectancy.
A: And what they choose not to say, or simply to imply, is frequently more important than any flat statements. Given that HWiC is running multiple clinical trials, seeing dozens of patients, and probably tied down by NDAs, IP issues, and patient privacy, I estimate he can probably only legally tell me 20–30% of what he knows, at any given moment. Which isn’t ideal, but I’m not going to meddle with a system that’s kept me alive for the past six years.
Q: No, about your life expectancy, you dolt!
A: Oh, I should’ve died by 2020.
Q: Didn’t I just say that?!
A: Aggravation and revisiting prior assumptions are key to long-term cancer survival, as are lengthy, discursive asides. I couldn’t take that from you. Also, because my own medical team flatly refused to give me any firm numbers until 2019, when I was over a year out. Until you’ve spent a year aggressively trying to reconstruct Actuarial Tables without all the information, I’m not inclined to share my mid-term notes with you.
Q: So, how are you, with regards to cancer, for the 40th time?
A: Oh, I’m fine, for the next six months.
Q: What happens in six months?
A: I get my next round of scans and blood tests.
Q: Are the blood tests important?
A: At this point in my survival, they’re just as important as my MRIs.
A: HWiC implied that my risks of glioma metastasis or recurrence are dramatically reduced, but he plainly told me that I’m entering the most-dangerous period for secondary cancers.
A: Cancers associated with cancer treatment. In my case, probably blood cancers. So, yeah, those blood counts might be the next line of defense or detection.
Q: This sounds extraordinarily complicated and horrifying.
A: So, the one thing I had going for me, that all the long-term “success” stories I know of, have in common, is that we endured a multidrug chemo regimen.
Q: What’s that, and what does it have to do with blood cancers?
A: Most cancers are treated with several different drugs, because it’s quite possible, for a highly-mutated group of cells, that Substance A will absolutely kill off 95% of that population, but there will be a few stragglers that will be naturally resistant to Substance A, and they will come back angry, and resistant to Substance A (during COVID, we all had that one friend who never wore a mask, cleaned the counters with her tongue, and somehow never got sick — this is a cellular equivalent). Most modern, effective chronic disease treatments work by combining multiple drugs, so, you get a cocktail of Substance A, B, and C in the same miserable dosage. This ensures that any rogue cancer cells that might be resistant to one or two drugs gets hit by the others. My personal expertise and graduate degree in Biomedical Science suggests that this is the preferred, gold-standard of care in other cancers, and is what makes my treatment unique, and uniquely risky, in terms of secondary cancers.
Q: How so?
A: Most glioma survivors are treated with only one form of chemotherapy — Temodar, a repurposed drug that’s used to treat a wide variety of metastatic cancers. If any brain cancer cells are resistant to Temodar, either that’s game over, or the oncologists double the dosage and hope it works. Temodar, by itself, carries a high risk of Leukemia. The longer you’re on it, and the higher the dosage, the greater the risks. I’ve heard of some brain cancer patients being put on Temodar for non-consecutive multiple years, to stabilize their cancer.
Q: So, why are you so unique that you’re now worried about blood cancers?
A: Because, unlike most glioma survivors; I went through maintenance chemo with the full, maintenance dosage of Temodar without a break, or going off chemo for health issues — I estimate maybe a maximum of 20% of us do that. I was also treated with a known unknown that works for me, and against me, and puts me into a very rare class of glioma survivor — those of us who receive multidrug chemotherapy.
Q: Care to elaborate?
A: Okay, I was treated both with Temodar (the standard chemo for glioma; which is already a repurposed drug), with another drug — “Marizomib,” which is a repurposed multiple myeloma drug. I was specifically given the maximum safe dosage of MRZ in the trial, to test for side effects and tolerance. Which means there are a host of unknowns in terms of treatment risks, BUT, it puts me in almost non-existent minority of glioma patients who receive multidrug chemo.
Q: So, why not just give every brain cancer survivor a fuck-ton of chemotherapy drugs?
A: I actually asked HWiC about this, toward the end of treatment, because, by that point, I’d started hearing urban legends of scary medical clinics that just gave everyone 45 different drugs upon entering, and I think his input, and my own academic and personal knowledge would dissuade everyone from doing so.
Q: You can’t just dangle that fabled cancer cure in front of us, especially after you’ve benefited from it, and tell us, “No.”
A: There are a few things that should give you pause before taking dog dewormer (yes, that’s a thing among incurable cancer survivors)(You thought Joe Rogan dreamt that up just for COVID? No, he stole it from existing medical quacks). The first is that the brain and spinal cord — your Central Nervous System (CNS) are biochemically, and anatomically “walled off” from the rest of your body, so, very little of what’s in your blood stream can actually interact with your neurons. This is why a head cold or a single shot of bourbon won’t kill you. It also means that the majority of chemo agents won’t even make it into your brain — but they definitely will hit your heart, lungs, kidneys, and liver. To paraphrase HWiC, you’re just playing a chemical version of “Russian Roulette,” except with known poisons. In my case, and the case of other multidrug chemo patients I’ve personally encountered, their medical team meticulously matched the chemo agent most-likely to work on their cancer with a specific drug. The oncs I’ve heard of who just randomly dose their patients with drugs rarely have practicing privileges in the US, which is rarely a mark of pride amongst physicians. Also, if you absolutely do not care about surviving the cure, decapitation will absolutely stop any malignant cells from dividing and growing, but you’ll have other problems. Also, I haven’t passed entirely from the risks of blood cancer; which, all of my leukemia and lymphoma friends assure me is no joke. Even though HWiC and myself might advocate for the importance of multidrug treatments, I’d be the first to point out that you need a safe, effective, qualified version — My tumor pathology and genotype made me a good candidate for MRZ, the Necromancers (my oncologists) didn’t just offer it to me because I was first in line.
Q: So, how do you feel about all of this?
A: Oh, man, like everything else in my life, that’s complicated. You might as well ask me for my feelings on puberty, or my 20s.
A: There’s an unfortunate tendency amongst Ableds to treat cancer like it’s a broken leg (something about which I know a lot, too) — they assume you get corrective surgery, spend a few months in bed, then a few months in physical therapy, then get on with life. Surviving cancer is a life-altering experience, simply in the coping mechanisms we develop to walk around without screaming in fear and pain.
So, I got my very first brain tumor at age 17. This was removed with a ten-hour neurosurgery. The only time a 10 hour surgery is good is if you’re in for a very delicate spinal surgery that was initially estimated to take 12 hours. This left me with severe neurocognitive deficits that absolutely shaped every second of my life since July 5, 2002 (when the first tumor was removed). I’ve since met other 20-year medical trauma survivors who have similarly mixed feelings; because it completely altered — and limited — the trajectory of my life. I had almost 15 years of brain tumor survival to train me for brain cancer, which is about what it takes to survive this disease. Having said that, surviving glioma is definitely not worth the price tag of 15 years of my life. I mean, being alive absolutely beats the likely alternatives in this case, and being given that extra time between scans is definitely appreciated, but it’s not worth the disastrous first dates or job/grad school interviews that ended after I had to explain why my life looks the way it does. I never wanted that for me, and, more importantly, I don’t want that for anyone (with the exception of a few national figures). I don’t know how we collectively solve that problem, except that it starts, with me, with the concept of institutional memory.
Q: Wait, that got really, upsettingly dark, then veered off-course. What’s happening?
A: I’m trying to describe what I’ve been doing since treatment ended in Dec. 2018, and how we all work together to make the Deadliest Disease Known to Man into a chronic condition with the same sort of stigma we attach to arthritis, diabetes, heart disease, or any other incurable disease. And that starts with cancer survivors providing every newly-diagnosed patient with a run-down on what they experienced, so no one wanders into an infusion center with no idea of what’s in store.
Q: Anything more pragmatic, or “Bread on the table?”
A: Oh, just this morning, I got to witness a first-hand example of someone mistaking chemo-induced panic (or ‘roid rage — both are possibilities) for his own, actual emotions, rather than chemically-induced bouts of panic and rage. A large part of my mission is debunking certain myths that frame (and sometimes doom) our approach to medical crises, and, part of that is debunking this delusional belief that we’re in control of our response to every situation, or that our physical discomfort won’t influence us. That’s really just the start, but learning to differentiate between what we can and can’t control is a critical, Week 1 skill to learn.