Ask A Survivor
Jenna had some bad news to deliver to the cancer support group today. It’s worth noting that, although these groups are safe spaces; I feel comfortable writing (somewhat) about them pseudonymously and in broad strokes because some of the specific scenarios, issues, and questions I see in them are mostly leaping-off points to broader, bigger issues that everyone will have to face, sooner or later (to quote you my grad school immunology/cancer biology professor, “Cancer is an unfortunate, but inevitable, side-effect of the way our immune systems and genetics are designed”).
In Jenna’s specific instance, it was that she’d been told she was tumor free; but that was a misreading of the scans, and she’s only had a 40% reduction in tumor size. She said she felt a little embarrassed about delivering that good news to us a week or so ago, and then having to walk it back. Here’s where it goes from Jenna, specifically, to Planet Cancer. In a room of about a dozen survivors, every single one of us had a story about that time a biopsy result was negative, or when a scan came back clean, or when a radiologist missed something. And it was the greatest month of our lives. We just weren’t aware of it, at the time. And then you get that call back, or someone in a lab coat with a clipboard says, “That’s odd,” and you’re no longer at escape velocity off of Planet Cancer, you’re back, trapped in your treacherous body that is doing its best to kill you. It’s happened to me three times, and it’s still been a shock each time. As far as I know, there is no English word for, “That moment when near-infinite relief bordering on joy is replaced by catastrophic panic” (Someone ask the Germans, that seems like a perfect concept for a German existentialist to make a noun for), but that’s what she’s experiencing. We’ve all experienced it, I think, and we’ve all had to come to terms with it. Once you hear the words “Stage 4,” you are immediately bombarded with articles from friends, family, and other well-meaning morons about “secret cures” or “the treatment they don’t want you to know about.” Here’s the closely-guarded medical secret the pharmaceutical industry and doctors don’t want you to know: There is no cure for cancer, any cancer. “Curable cancers” are just ones that are easily detected, and there are multiple treatment options that can be used effectively without killing the patient, for when the disease returns. I was enormously lucky (in my usual, highly-specific, “lucky in a really weird and horrible way”) in that my oncologists, The Warlocks, never discussed “curing” me, they used words like “treat,” “manage,” and “monitor.” Terms medical humans usually associate with incurable-but-manageable conditions like heart disease or diabetes. Which put me in the “correct” mind-frame of simply getting down to the business of completing treatment, staying healthy enough to be a candidate for further treatment, and continuing to closely monitor my health and any related conditions.
Jenna mentioned that she’d gone out, celebrated, and bought an expensive dress she’d been putting off in case she died (she noted that specific caveat because dead people usually don’t have much use for elegant frocks). I pointed out that she now had something to wear to infusions. She probably thought I was joking, but I’ve heard stories of survivors dressing in formal evening gown or tuxedos for infusions. Trust me, when I was “healthy,” it seemed like a ludicrous idea, then I had to get infusions for a year, and I got it. Treatment is tough, and you have to do something to psych yourself up for it. Healthy people might respond with something like, “Why wouldn’t you schedule a cruise or rent an apartment in Paris so you have something to look forward to after treatment?” To which I would point out my own particular situation (and Jenna’s), which is, “What if there is no ‘after treatment?” Admittedly, I’m coming at this from the angle of brain tumors, and you hear a lot more horror stories about oncologists discontinuing treatment, or treatment becoming ineffective, than you do the Lifetime Special where harsh treatment saps the joy out of life, but, at the same time, if you can’t learn to be happy and make the most of life on chemo, it’s unlikely that treatment will discontinue, you’ll be noted in the medical journals as the first survivor conclusively cured by a single course of treatment, and then you will be happy and fulfilled. No. I’ll admit that being pumped full of toxins on a regular basis isn’t likely to induce happiness (although it did induce cold sweats and hallucinations in me)(this is true), but, if that’s the only thing holding you back, you probably weren’t leading a happy, fulfilling life prior to cancer. I’m not going to argue that pain and crisis are our defining moments, but they can shed a lot of light on other aspects of our life. Don’t put off that cruise; don’t hesitate to buy that expensive dress because it might go to waste. Do it now, enjoy it, and don’t apologize for it; next week might not come, and it most certainly won’t come in the way you imagine it will. But, to get to more (and more general) issues survivors face:
Q: What if your doctor keeps recommending the same treatment?
A: Take it. Even though physicians aren’t particularly smarter or brighter than the general populace, they’re probably recommending that same treatment this time because it’s worked in the past, and it’s not a great idea to reinvent the wheel when that wheel is made of flesh and blood. Again, there are no cures for any cancer, and this should be seen in the same light as an endocrinologist telling a diabetic they need to lose weight, watch their diet, exercise, and take insulin. It’s not going to cure anything, but that’s all you can do in a medical crisis: play for time. Having said that, there are a lot of incompetent physicians out there (the British Medical Journal once rated “medical misadventure” as the third-leading cause of death in America), and if you’re seeing diminishing returns on treatment and they’re recommending the same thing, it might be time to see another physician or explore different treatments. “Treatment seems to be effective, so we’re increasing the dosage and recommending continuing it” is an awful sentence to hear, to be certain, but it beats “We’ve done all we can…” (as Jenna and myself can attest). Or, God forbid, talk of “making you comfortable.”
Q: What if you don’t trust your doctors?
A: I feel like I need to break this into two separate categories: “like” and “trust.” Even though I got along fine with the Warlocks, I was never friendly with them (as opposed to my radiation oncologist, who is a living saint). And I’m somewhat suspicious that my neurosurgeon is a low-level sociopath. “Liking” people is an emotional reaction that clever, incompetent physicians can use to their advantage (if someone can create a great first impression, people rarely rethink that impression, so if you immediately like your doctor, you’re more inclined to overlook obvious signs of incompetence— and I did know a straight-up psychopath in med school — if he did well enough on licensing tests, and he could fool enough educational superiors, there’d be nothing to stop him from private practice). “Trusting” your doctors is a far more important metric, and, if you absolutely do not trust your doctor, find a new one. Medical tourism is a thing, and you should feel free to go to where the very best practitioners are. Again, bear in mind that this is a field where idiocy can be measured in corpses, so you do want to be careful in giving your trust. And bear in mind that relationships are a two-way street, and imagine a profession where the majority of your clients die horrible deaths, and you understand why guys like Head Warlock in Charge are a little gruff and off-putting. At the same time, they also have to navigate a really weird set of relationships where patients put arbitrary and weird restraints on what they will or will not do (I’ve met brain cancer survivors who won’t do surgery, but are fine with chemo and radiation)(and any and all variations on that weird, “I will do this, but not that” attitude). Even though my relationship with the Warlocks was never frosty or bad, it did improve immensely when I started making it clear — repeatedly — that my life goal was to complete treatment, and then get more treatment. It was a subtle change, but the relationship dynamic went from a gate-keeper attitude to a facilitator attitude. That’s the relationship you want; cancer gives people all sorts of reasons to withdraw interpersonal investment, you want to be the person everyone else has to keep up with.
