Ask a Survivor

I was part of a prestigious bioinformatics/bioengineering internship a number of years ago, which was initially created by a group of biomedical researchers who realized that the number of biomedical discoveries and developments was dwindling. They had two possible answers; the first was that science had already gotten all the low-hanging fruit, and we’d have to further grind away for decades to make further discoveries; the second was that the specialization and compartmentalization of science was finally catching up with it. The analogy the program’s founder used was, “If you were doing an experiment on chlorophyll levels in tree leaves, and were out in the forest collecting samples, and came across a squirrel in a clearing, playing the piano; that’s it for the tree experiment; you’ve got something else that requires your attention.” Their solution was to start cross-training researchers in disparate-but-related fields so that someone researching how to program computers to understand human speech, would recognize — and investigate — when similar phonemes were used universally, and investigate that weird linkage (to cite one hypothetical example).

To bring this to modern medicine; there’s a rather dramatic, unfortunate disconnect between medical professionals and their patients and research subjects that could be bridged if they (medical people) stopped acting in such a formal, rigid fashion with regards to research, and started acting more like private investigators or investigative reporters. I bring this up because I recently stumbled across a local cancer support group that, despite having several dozen members, has virtually no PR or web presence or any real way of advertising itself. You’d probably have an easier time finding a gay bar in Alabama than this group.

Which just kind of highlights the unfortunate nature of stigmatization that survivors face, and the lack of cohesive networking opportunities for us (which could readily be seized by any friendly researcher who just dropped by and asked some questions informally).

One woman in the group talked about going through breast cancer treatment, and how, next week, she had her final check-in, and that would be it, and, even though it was good news, she felt kind of sad that it was ending. Not only could I immediately relate, it’s a TED talk ( https://www.ted.com/talks/suleika_jaouad_what_almost_dying_taught_me_about_living), and, as I pointed out, that weird feeling of, “So now, what?” was what brought me to them.

When I talk about my cowardice or incompetence, I’m not exaggerating it, but everything in the real world is based on a curve. I’ve had three major (life-changing) surgeries, 41 infusions, and 60 days on oral chemo in my 34 years. For some of the folks in this group, they’re on their third surgery, 50th infusion, or 30th round of oral chemo just this year. And some of them have been doing this for decades. I’m just a dung beetle compared to these people.

I don’t know whether it’s some sort of group decision on society’s part — apparently, I was getting coffee during that meeting — or whether it’s just the sort of unfortunate end-product of millennia of dealing with infectious diseases (which do require quarantines and tracking), but the isolation and stigmatisation of survivors is not only needlessly cruel and harmful to us; it’s harmful to the rest of society. See, when people feel cut-off from the rest of the world, we’re less likely to open up to people about our own experiences, which makes it harder to collect, collate, verify, and correlate data on our experiences into some sort of universal experiences. I’ve written about it before, I’m sure I’ll write about it again, and I’m sure I’ll stop writing about it the minute it seems like civilization is taking steps to rectify these issues.

Given that Hippocrates first described cancer in the fifth century, BC, I’d say I’m not going to run out of material in this lifetime or any that might follow. So, a brief run-down (yet again) on some of the terrible stuff I’ve learned that can be universally applied to any cancer survivor or their family.

1. You are not alone — No matter how dire or awful your diagnosis or prognosis, there is someone in a similar situation or a qualified practitioner who can either help you, or steer you in the direction of help. One woman in the group talked about Stage IV cancer that had become so diffuse, she started the year with 36 tumors. She’s on an experimental treatment, and down to three. Three metastatic tumors are not an ideal situation, to be certain, but it’s a hell of an improvement compared to 36 (similarly, I have a 30–50% chance of making it to 2023, which are not odds I’d wish on anyone, but they stack up very nicely compared to the overall GBM average of 5%). If you have a rare or incurable disease, don’t wait to go through the standard referral process to find someone qualified and willing to treat you — go directly to the best. Pretend your life depends on this decision.
2. You’re going to lose your hair — Bank on it. I have never met a survivor who made it without their follicles unscathed. Your hair may or may not grow back, but, honestly, by that point, you will have bigger problems than your hair coming out in clumps. I would, however, recommend getting a wig or hat or whatever well in advance so that you don’t wind up in a hat shop 20 minutes before your boss’s retirement party looking for something. That’s how people wind up with trilbies.
3. Attitude is critical — I might have to clarify, I don’t mean “good” or “positive” attitude or any of the attitude issues caretakers seem to gripe about GBM patients in some of the online groups I’ve seen. Whenever I’m contacted by other brain cancer survivors about how I “made it” (I always like to add the suffix, “so far” to that idiom), I usually recommend experimental treatment or keeping track of clinical trials; I’ve since revised my stance. Your goal should not be to “cure” a disease that, by definition, is incurable and fatal, it should be to survive four years and keep healthy enough to be a candidate for further, aggressive treatment. Four years is the generally-agreed-upon half-life of medical knowledge; in four years, there will probably be different treatments and guidelines in place. And, once you start hearing about the number of people who discontinue treatment or whose oncologists recommend stopping treatment, the horrifying numbers start making a bit of sense. Speaking of which…
4. It’s going to be rough — I was giving that little spiel about the importance of keeping with treatment no matter what to a recently-diagnosed survivor, and he wasn’t dismissive, but reassured me that he intends to see it through. I wish him the best of luck, but every survivor needs to know, going in, before the end, it’s going to be as bad as you probably fear it will be. Conventional descriptions of hell seem almost prosaic and boring compared to what I’ve actually seen and lived through. Even though I harp on about the importance of continuing treatment, I honestly don’t begrudge the folks who don’t go through the full course. It’s both physically and emotionally brutal; the only thing that kept me going through some of my darker moments was the even darker thought that the disease was suffering just as much as I was.