#‘break the binary’ but god forbid if you see a person you suspect to be cishet break gender norms

[braindamageforbeginners]

24 Months

Assuming I don’t drop dead in the next week or so, on February 1, I will be at 24 months No Evidence of Disease (NED)(also assuming that the MRI I got in early January is still applicable). This is HUGE. I should point out that NED is only on scans, and kind of highlights the unfortunate divide between what’s on paper, and the reality on the ground (possibly literally, in my case; because, yeah, the scans are clean and stable (hooray!), but I’m still exhausted, and will crumble and fold like a cheap lawn chair if you ask me to sprint.

It still beats the alternatives, though.

I did meet the only other Phase 1 Marizomib patient on the planet, though (I’m exaggerating, but only slightly). Jimbo (obviously not his real name, nor does that reflect what I think of him, but I’m running out of pseudonyms I can easily remember) is in the Phase 1 trial for using MRZ on recurrent GBM. Obviously, I’m interested in keeping tabs on him for personal reasons, because the tumor coming back is every survivor’s biggest nightmare, and I’d like to either have some sort reassurance that this thing is either completely in the rear-view mirror, or I have a back-pocket treatment option (when I was being treated with MRZ, it was for first-time diagnosed glioblastoma, not recurrent; it’s since gone on not only for rGBM testing, but is being tested on certain types of drug-resistant leukemia). Obviously, I gave Jimbo all the advice I felt would be helpful (LOTS of CBD, don’t be afraid of antidepressants or antianxiety drugs, lots of exercise, liquids, and fiber, etc.), but he did highlight an issue I’ve had discussing cancer and health with a lot of other survivors and healthy people.

We have a very unhealthy, binary, static view of health that mirrors our view of success. In America, we tend to view success purely in terms of money and/or family. You either have a dozen yachts, four beautiful children, and a fulfilled spouse, or you’re homeless and single. God forbid you try to mix and match from those two extremes and/or fall between them.

Life with cancer forces you into that big grey area between “professional triathlete” and “hospice care.” Most newly-diagnosed patients (understandably) flounder in that area, and Jimbo most certainly qualifies. Our society, health, and education system are designed around understanding infectious diseases. Which is understandable, we’ve had all of human history to understand them, and they’re pretty easily understandable and remedied, even with Medieval medicine (this where we get the concept of quarantines and isolation from). Whereas we’ve only had 2500 years to learn about cancer (Hippocrates was the one who named it). I suspect that this nasty “Healthy or dying” binary dynamic is a holdover from that thinking - you can “cure” infectious diseases in a variety of ways, but the point is, you can get to a point where all the foreign pathogens are out of the system. Bingo, you’re cured.

At the risk of man-splaining (cancer-splaining? Can-splaining?), just a quick review/summary of how cancer works: Every cell in your body is programmed, on a genetic level to divide, grow, make proteins, divide a few more times, and then age and die. You actually want some cells to age and die, that’s why you don’t have webbed fingers or a brain that’s larger than your skull (there are some gruesome experiments wherein researchers permanently activated proto-oncogenes in mice)(think of your body as a symphony, and every cell as a single musician with an instrument - you don’t want everyone playing as loudly and as fast as they can all the time). The genes that promote cell growth and division are called proto-oncogenes. The genes that stop that and promote cell death (apoptosis) are called tumor suppressor genes. To paraphrase an immunology professor from graduate school, when you have a proto-oncogene permanently activated and the corresponding tumor-suppressing gene is turned off, you have cancer. That single cell then induces similar mutations in neighboring cells and even distant cells (the process is poorly understood). Unless medicine has gotten a helluva lot more effective since I last checked in (possible, but unlikely), it’s extraordinarily unlikely that medicine has some technique to nail every single cancer cell in one go (even with tools like immunotherapy, cancer mutates and divides like traditional pathogens, and, eventually, becomes resistant or evades almost every form of treatment). If you want some secret conspiracy hidden by Big Pharma and “they,” it’s that medicine is far more incompetent and clueless than it presents itself as, and the PR for “curable” cancers is just just as hollow as our tumors.

I may have mentioned it previously on this blog (which reminds me, shameless self-promotion; I now write more frequently at https://medium.com/@patrickkmc10), but you don’t see diabetics or heart disease patients moaning about their incurable conditions, even though they are incurable. But there’s an awful lot of survivors whinging about incurable diseases on Planet Cancer. Let me be the first to point out, there is no such thing as a curable cancer. Unless you have some convenient back-up body you can jump to or CRISPR technology grows by leaps and bounds in your projected life expectancy, it’s here to stay; it is in the most heavily-protected part of your cells, and it’s likely to be in more than one cell in your body.

I was lucky enough to have oncologists who, while not exactly the warmest and fuzziest of folks, always viewed - and encouraged me to view - this as an incurable-but-manageable condition, like heart disease or diabetes. Which was a surprisingly helpful way to look at this disease; complacency kills survivors fast (denial comes in many more flavors than, “There is no problem,” but the best way to look at it is that denial is any attitude that discourages you from just tackling the problem at hand as if your life depended upon it). I get contacted a lot by caregivers and survivors asking me how I “beat” it; I always feel like I have to correct them and point that I beat it this time around; it’s likely to return, and I have no idea how I’ll deal with the disease at that point. I’m hoping a few more senators and rich and famous people will die from it, and science will miraculously make a break through before then.

In the meantime, my treatment strategy was both surprisingly simple, and surprisingly hard:

1. Get the most aggressive, effective treatment possible, and keep on that regimen for as long as possible - Jimbo is starting his treatment course with the same information (and similar educational background) that I came at it from; namely, the world of statistics and medical studies. Which is fine, but, as I learned, these statistics are like the stats surrounding the Vietnam War - they don’t portray an accurate picture. When you start going to support groups and asking questions, or start hearing from people affected by this disease, there a lot of “Oh.” moments. My first big one started on Day 1, when Head Warlock in Charge casually mentioned that they don’t always recommend the full six weeks of chemoradiation for everyone, and I started hearing how relatively few of us make it through treatment without dangerous side effects (including Jimbo, I’ve heard of/had direct or indirect contact with - let me count - maybe half a dozen other GBM survivors; I am the sole one who made it through chemoradiation without any seriously dangerous side effects)(aside from the TIA and residual neuropathy, I mean). Compound the fact that treatment, in and of itself is dangerous with the stat that something like only 25% of us qualify for further treatment, and you can start to see why this is such a dangerous disease, which brings me to...

2. Stay healthy enough to survive treatment - and qualify for more (and/or more aggressive) treatment - This is surprisingly hard to do. Treatment is harsh and dangerous, and not all of us are going to respond to it. A turning point for me was when Research Coordinator told me there was a direct correlation with how well survivors tolerated initial treatment and long-term outcomes. I took that as a veiled warning about the dangers of unhealthy habits. I can tell you a few things about yourself, without even thinking: First, you’re probably not getting enough fiber, protein, sleep, and exercise. You could also probably stand to take in more fluids and read some more books. You should probably also dance and draw more, while you still can. I can’t, thanks to a very unreliable left side; I don’t regret the dancing part, but I should’ve taken up painting while I still had two good hands (as opposed to one good hand and one treacherous one). If you find yourself thinking, “Apart from the cancer, I’m pretty healthy,” rest assured, yes, that is a really stupid thing to think, but you’re not alone in that sentiment, and that’s the goal during treatment.