Ask a Survivor: Starting Treatment

I remember reading, a few weeks ago, that, although the words “envy” and “jealousy” are used mostly-interchangeably in English, they’re two distinctly different psychological concepts — “jealousy” is fear of losing something or someone you love; “envy” is the resentment you feel about something you don’t have but want. The difference between the two was brought to the fore of my mind this week, because a friend referred me to another newly-diagnosed glioblastoma survivor. I’m now slightly-past three years post-diagnosis (the average life expectancy is two years, max), and I recall when I got down to the nuts-and-bolts business of survival and started looking into other survivors and their stories. I was acutely aware, in those days, as I interacted with long-term survivors (before I got that title, then turned 34), of a sense of loss of who I was, who I wanted to be, and what I wanted to be, and the life I wanted — I don’t know if “jealousy” translates into a sense of growing resentment as you realize what you’re in the process of losing, but I know I was envious of all the long-term survivors I met. I wanted to get through to the other side; I wanted not to have to live in a constant state of hyper-acute terror and pain.

I don’t think I’ve ever been outwardly spiteful or unpleasant toward my fellow denizens of Planet Cancer, but I also know that most of us have that thousand yard stare associated with combat vets, and something like 20–25% of us eventually develop PTSD (which, realistically, is to be expected when you’re confronted with the reality that we’re going to chop off bits of ourselves, poison, and nuke our own bodies, after which, we might carve out a few more years, if we’re lucky). I don’t know if I have it these days; it certainly wouldn’t surprise me. We don’t really see ourselves as inspirational figures; we’re cautionary tales ableds tell their kids about whenever the subject of drugs, cigarettes, poor life choices, or anything else the former-middle class uses to scare their toddlers into behaving. Like everyone else in support groups, I offer all the advice and support I have, while a quiet voice of doubt, in the back of my mind, wants to ask, “Really? You want to be like me, Jenna, Brandon, Bob, and Mike? We’re all broke, both literally and metaphorically, and we all have living wills on file*? There’s virtually nothing about us that we want in our lives, you most certainly won’t enjoy being much like us.” Yeah, we beat cancer once — or more than once, more-frequently; but it’s not like we ever really get to stop worrying about the disease. Enjoy ringing the bell at the end of chemo; bring all your nurses doughnuts, but prepare for a life dedicate to aggressively and painstakingly managing your health as if your life depends upon it. It never, ever, for a minute gets easier, but you grow stronger and more capable.

I’ve written elsewhere about the sort of hemming and hawing we all tend to make at the prompt, “I just got diagnosed two days ago, what do I do?” because survival is such a specific, individualized process that it’s really hard to know where to begin. For starters, make sure you’re seeing the very best physicians. This is a little tricky, because every single survivor inevitably has the very best physicians. I’ve had a ton of exchanges that end with the line (not on my end), “But the facility is so new!” I’d point out that USMC barracks are traditionally spotless and well-maintained, but I wouldn’t recommend looking for long-term medical care in an artillery platoon. There are advocacy groups and organizations and even apps designed to help you find the best specialists in the field. When in doubt, don’t automatically go with your GP’s post-grad buddy, ask for a second and third opinion. And ask the charge nurse what they think of Dr. X; they’re usually a reliable source of information (my first, “I might survive this thing” moment was when Dorothy, the admissions nurse, asked me who my oncologists were, I mentioned the overlords of Mordor, and she said, “Oh, they’re THE BEST”)(it’s those little affirmations that count a lot when you’re down)(BTW, my very favorite pep-talk came from one of my phlebotomists who said, “You can’t trust prognoses; I know one girl, the doctors gave her six months to live; I’m still drawing her blood seven years later.”)

If you have a cancer considered “incurable” (they’re all incurable, but it helped shift my thinking on a seismic scale when my medical team started using verbs like “manage” and “treat” very deliberately when I asked questions), look into experimental options. Now. Don’t wait, because disease progression is usually a disqualifying factor in most clinical trials. And once you find a course of treatment that seems effective, cling to it for dear life, and never apologize.

And, I don’t know what you’re expecting to see or experience when surviving a chronic, dangerous illness, but it’s likely wrong. To quote you Christopher Lloyd, “You’re gonna see some serious shit.” You are going to be a few feet away from some insane, unbelievable stuff that life Before Cancer (BC) could not possibly begin to prepare you for. And that’s not just cancer patients, that’s pretty much every chronic disease survivor I’ve met (bad news; if you got COVID, you have to be on the lookout for new and exciting autoimmune disorders); we all have some hair-raising tale that ends with something like, “And then I realized I’d been bleeding the whole time. Good times, eh?” Speaking for myself, I can tell you that you haven’t lived until you’ve seen a man have a psychotic break in a waiting room and been dragged out screaming (yes, it happened), but no one survives without a few stories that would disqualify us from tea with the Queen. Whatever you’re expecting, expect more of it in every way imaginable. The tricky part of the process is knowing that there’s far more out there you can not begin to imagine, let alone prepare for, than you can imagine; and some of that scary, dark, formless badness has your name on it, too. If you’re really lucky and skilled, you’ll have the resources so it just becomes a ten-minute rage-nap (yes, you’ll get ’em) before numerous, aggravating phone calls.

Another common trap newly-diagnosed folks make is trusting their physicians too much. I’m not going to say that they aren’t more-qualified and better-trained than the vast majority of people, but they’re also just as prone to errors or bad judgment as anyone else. And, sadly, due to a deeply ableist and elitist culture at the core of modern medicine, you’re unlikely to encounter anyone in a lab coat who will stop and say, “By the way, you’re likely to wake up at two in the morning in a panic attack; when that happens, if it’s on a chemo night, you probably want to lie down, possibly grab another Ativan, and start focusing visually on your surroundings as a way to take your mind off the pain.” (it was psychologist who recommended that as a short-term coping mechanism to get me through the worst days of chemo, and it worked; but the fact that it came from a shrink, who’s paid to be empathetic, and not an oncologist or nurse, is not exactly a ringing endorsement of the medical profession). One of my oncologists made a stunningly bad call on a recurrence that allowed that recurrence to go from a low-grade brain tumor straight to a high-grade one. She’s delightful, but she’s now my second opinion oncologist. If your physicians make one mistake, don’t wait for them to make a second one, or it might be the very last decision you make. The margins of life and death in this game are razor-thin, and that’s terrifying, at first, but you do learn to navigate them.

These are just a few, off-the-top-of-my-head, general suggestions for everyone who just heard the words “stage 4,” but the bigger cultural problem survivors face is that we have a profoundly wrong understanding of how disease works, and it distorts how we react to it. We view all diseases the same way we tend to view sinus infections; it’s miserable, but, you go to a doctor, get an antibiotic prescription, take that prescription for a few weeks, and you start recovering, and eventually get all better. There is a logical, nearly-mathematical, consistent progression from Point A to Point Z, which is a massively dishonest conceit whenever discussing complex diseases. You can be at point M and get knocked back to Point E, or discover that Point H has 14 weird substeps you have to navigate. You can be at Point T, discover you’re back at Point M, and then be told that, actually, that’s part of the process, welcome to Point U (one of the crueler aspects of navigating a long-term illness is figuring out that your mind and body can — and frequently do — lie to you). When people approach me for advice, they tend to, as I did, see someone who is “all better,” which skips a few glaringly obvious points you don’t know about until you’re “all better.” The first, hardest one is that there is no such thing as “all better” with long-term diseases. Don’t get me wrong, we’re undoubtedly in a better place than when we were first-diagnosed, but we’re nowhere near what we were before we became symptomatic. And we never will be, which is a hard, terrible truth to endure. But, what I now know is; only dead people are at Point Z. Most long-term survivors have learned to maintain life at Point R or S (with frequent diversions back to Point L or Point M).

Even the concept of “mentorship” in chronic disease survival is fundamentally flawed, because it connotes that there are some concrete, definitive answers out there, or some supreme authority who has answers. That’s why so many of us are cautious with advice or how to go about survival; we haven’t really figured it out, ourselves. I’m still very much the same person who spent November 11, 2017 (the day after I was diagnosed) dry heaving into the toilet. Obviously, I’ve stopped the dry-heaving, but I’m still almost as frightened and insecure as I was, then (we can talk about how enormously helpful psychiatric drugs and low-end psychedelic drugs are for coping with horrible existential crises, but they don’t solve the crisis, they just help you advance a little).

I don’t really have a whole lot of great advice for the newly-diagnosed as a general rule, just because, as mentioned, cancer is always a unique experience (which is probably part of what makes it such an isolating experience), BUT, I will say that I’d encourage everyone to cultivate multiple medical opinions, eat more fiber and protein, be more physically active, seek out psychiatric support from Day 1, and remain calm at all times. That last one is a critically-under-discussed point. We tend to become reactive after a diagnosis, and that’s a necessary part of the process, but you can’t remain in a reactive mind-set for too long, or the disease will outpace you (also, decision-making in that mind-set poses some unique problems); but, more importantly, post-diagnosis, you become your last, best defense against Further Terrible Complications. You have to remain calm at all times, because that is the only way you keep yourself, your medical team, and your support network together long enough to make it to Point B. Now for the good news; once you get to Point B, you never, ever go back to Point A. You permanently graduate, congratulations. You can now get to work on all the other problems demanding your attention.

*Pull the plug, feel free to assist me to a gentler death if things get too gruesome too quickly for me to make rational decisions, make sure my organs go to someone who can use them, and make sure my academic oncologists — the Warlocks — get my body for research purposes, because I’ve already promised them that, and I don’t think it’s wise to anger dark wizards.