Quick show of hands, how of many of you know what the word, “Scanxiety” means? How many of you have absolutely have no idea what it means? How many of you had never, ever heard of the word, but knew it in a way that most Evangelical Christians claim they want to know God, the second you first heard about it?

My tribe uses the term frequently, and all inductees “get” that term immediately. And start using it perfectly within context within 90 seconds of hearing it. If my public health sources are accurate (which are outdated and dodgy to be sure), it should apply to 30–40% of Americans. If my immunology professor from grad school is accurate (and that man was easily smarter than you, me, and the next dozen people you could name), that group will include everyone who lives long enough without a fatal tragedy first.

I told a friend recently — who’s another trauma survivor (hers is physical, mine is medical)— that trauma survivors are a group apart from society, and those of us who are forced to relive that trauma frequently are a smaller subset of that group. Despite making up a not-inconsequential percent of the population, somehow our society delights in making our lives nightmares on a fairly consistent basis.

At least, with cancer survivors, there is a solid medical rational behind the constant scans. And, at least there is something approaching consent (I’d argue that if you’re in a situation where the choice is, “Do this thing you really don’t want to do or possibly die;” consent isn’t a realistic expectation, but we all cling to the ceremony of the thing, like it’ll protect us)(it really only protects our illusion of choice, but, as I know, for some of us, that tenuous illusion is the only thing keeping some of us tethered to reality). It still doesn’t make any of it more bearable. I’ve gone in for routine scans, and, on three previous occasions, been quietly told not to go anywhere before the physician can talk to me. I’m well aware that my batting average is far better than the standard survivor’s, but you only need to lose a single game of Russian Roulette before you’re not playing anything. I know that I am one of the few known glioblastoma patients who’s been treated with a multidrug regimen, and, in the few other stories I’ve been able to confirm, such treatments were effective for decades. Prior to my latest diagnosis, and the grim reality of mortality finally hitting me, decades would have seemed like a generous gift of time. Now, even though it’s looking like a more-certain thing by the day, I know it will not be enough time.

Even though I’m not at my most-likable four times a year, this one came at a truly bad time. I wrote of the cancer center looking more like a ghost town the last time I was there, in April. Except I’ve been on speaking terms with the ghosts prior to their demise.

And, to further rub salt in my wounds, my cell phone charger died on me. My cell phone holder broke. Normally, these would all be inconveniences or somewhat inconsequential issues for me to overcome, but they happened within a week of my scan. Again, if you know what “scanxiety” is, you’ll know what I mean. Cancer survivors are a superstitious lot. Believe me, it would gall 15-year-old-me to know that, in 20 years, a bunch of minor stuff would be enough to thoroughly rattle me, but survival removes a lot of free will in deciding who you become; you only get to react. And, if your life depends upon you maintaining a low level of paranoia about your own body, it will seep out into your world view in some strange ways.

Cancer survivors get to fear for our very lives on a very regular basis (the regularity of that is dependent upon how long you’ve been No Evidence of Disease — there’s a part of me that knows that death, while Something to be Postponed — will seem almost merciful compared to what brain cancer does to you). In order to put you in the mind of a survivor going in for a “regular” scan, go find a Pathophysiology text, or encyclopedia of diseases — they’re both real things, trust me — find one disease at random, and imagine, bam, that one’s got your name on it; familiarize yourself with the details, exactly what will happen, as you lose physical abilities, mental abilities, memory and thought flee, until there is nothing left of reality but hard, bright-white pain, and the soft embrace of ultimate nihilism is all that’s left, and flip a coin with that outcome on heads, and a “normal” life — routinely interrupted and shaped by treatment, medical needs, and our various and sundry disabilities — on tails; now do that four times a year. If Anton Chigurh showed up for a friendly game of coin-toss that often, you’d be a Debbie Downer frequently, too (I use the coin-toss analogy because not only is it a fast, probability short-hand most people can readily understand, it’s the rough, best-case odds for “lucky” ATRX mutants like myself; for most glioblastoma patients, it’s more like a Dungeons and Dragons D20, except you need to roll a “1”). It’s not hard to understand why we’re a bit superstitious; give Richard Dawkins lymphoma and I guarantee you, if he makes it a month, he’ll be turning anti-clockwise exactly six times before entering the cancer center.

I don’t know if superstition and looking for omens are a coping mechanism for cancer, or our scans. I do know that you can not begin to understand fear until you’ve believed with every neuron in your brain, that you would not live to see 2020. And now, defrost and reheat that sensation every four months. If I’m a good boy and live long enough without a recurrence, I might go 6–12 months between scans, but that’s in the same realm of possibility, right now, as me winning a mega lottery. It’s not a solid retirement plan. It’s certainly not enough to make life plans with. I can’t carve out a career when I can expect to be emotionally distraught to the point of incompetence four times a year. That is the Sword of Damocles, folks; we get it waved over our head fairly regularly. And these little rituals serve to remind us all of the power of belief over knowledge. I know how long I’ve been NED. I know that every week without recurrence increases the odds I’ll have precious decades to run from this disease. Every month increases them dramatically. Even though someone else thought of “scanxiety” which nicely encapsulates the phobias and neuroses involved in routine scans, we need a term ((if it isn’t already a Yiddish curse) for, “All of those victories are only temporary”)(that is the very special hell survivors live with — the knowledge that, even if this scan, like last time, comes back clean, we will, eventually, be back, and, sooner or later, the house will win. That is the sensation; I have no idea how to cope with it, even though it’s one of the most-asked questions floating around brain cancer support groups. At this point, I’m open to the possibility of LSD or psilocybin microdosing. The best I’ve got are prescribed drugs and RSO (which, sadly, has limits), which usually do the job quite well, but, again, I’ve spent the last week with minor technological accessories dying, amidst a national pandemic which has tens of thousands of people dying. And I’m going to a major hospital that specializes in the people who are most-vulnerable to COVID.

There are two aspects of fear of death; most people get it wrong because they’re worried about dying. I totally get this; I understand it; I’m known in some circles to be the Coward’s Coward (this is true). But all of this overlooks the true bonus horror cancer survivors face: you only have to watch us die; we actually die while watching you watch us die. It’s only because I know my family is the stuff of Jerry Springer that I want all those closest to me to put on a brave, stoic face, or they’ll turn my passing into a low-grade WWE special (and, to my friends, when that inevitably happens, I want every single one of you betting on the outcome).

And that sudden flip of emotion is a nasty part of the process, too. I’ve told newly-diagnosed folks that it’s not the disease that kills you, it’s whiplash exhaustion of going from “I’m doomed,” to, “Yippee!” followed by the whiplash of another friend saying, “I’m so glad to hear that, I got some bad news last month.” Not that they shouldn’t tell us; a development on Planet Cancer demands the Bat-Signal be lit; but it would be nice for all of us to have a clean victory at the same time. And it would be nice to make it to four months between scans. I realize it’s only an extra month, but until you’ve played for those exact stakes, you can’t begin to savor an extra whole month without our status, disease, or fall from grace smacked in our face. If that seems a big much for you, imagine how racial minorities, LGBT kids, or my fellow inhabitants of Planet Cancer feel.

Circling back to my original point, all able-bodied people have a nasty tendency to see disease as a binary thing — either you’re dying or you’re immortal. That gray area most survivors live in doesn’t exist for them. The uniquely hellish scenario in which you get to march back into a cancer center for a scan, then relive those worst ten minutes of our life between being ushered into an exam room and waiting for the oncologist (I realize that they’re not presaged with the assistant making it clear that the oncologist needs to talk to us before we leave — that’s a given, the entire raison d’etre for these social visits, which, somehow is almost worse than that first warning, it’s an admission that our entire state of being is now simply waiting for disaster to strike again) is far beyond normal human experience. We do it, because we don’t really have an option, but, at a moment in American history when we’re discussing the negative outcomes of having tiers of citizenship and how traumatized everyone who is not a multimillionaire is, maybe we should have a national discussion of what not only previous traumatic experiences do, but what being forced to regularly relive that trauma — albeit, in an indirect way — does to people.

Written by

Science journalist, cancer survivor, biomedical consultant, the “Wednesday Addams of travel writers.”

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