How to Survive a Terminal Disease
So, let’s talk about how we talk about cancer, because our framework defines the narrative that ends in death and blood. I have a 95 year old grandmother, Marge. Whenever Marge develops some new ailment (and she has more of those than grandchildren, at this point), regardless of the nature of that disease, there is none of the traditional hand-wringing, blame, and paranoia that IMMEDIATELY occurs the minute after I disclose my own diagnosis.
Marge has heart disease? OF COURSE SHE DOES, she’s 95 and smoked continuously from 1947–1977. Arthritis? Obviously she has that, she’s 95. I’m convinced that Marge could be impregnated by one of the creatures from the Aliens films, and, as the creature gnawed its way out of her chest, the familial chorus line would be, “Welp, guess she should’ve eaten more vegetables.”
But whenever I mention the C word, people take a step away, because we’ve collectively acknowledged that some diseases are simply unavoidable — the biochemical structure of cardiac tissue and cartilage means those tissues will, tragically, eventually wear down. But if I dare suggest that cancer is equally biochemically unavoidable, everyone takes another step away.
A large part of this is due to successful advocacy campaigns to destigmatize those diseases, and, of course, the fact that most of us know — and know we know — a cardiac patient or diabetic. Cancer survivors are still very much in the closet, both because it’s nice to think that you’ll live forever if you avoid a heart attack, and because Western Society lives in denial of death. If you want to argue that Christianity is the cornerstone of our civilization (agree to disagree), you must also acknowledge that the primary appeal of religion is the promise of immortality. What’s the phrase, “Eternal life in heaven?” When denial of death is the cornerstone of a culture, having a fatal condition is an immediate offense to everyone’s sensibilities.
Because Denial is not only the bedrock upon which our society is built, but also the first stage of grieving, it’s a logical place to begin the discussion of terminal illness. I would point out that denial comes in two broad categories — the denial of any problem (that’s the whole toxic positivity and “You’re a warrior” rhetoric)(Oh, I’m gonna get to that), or the denial of any hope (that’s, “You poor, doomed, damned soul, let me theatrically sob for you!”).
Both of these reactions are made to absolve the viewer from any responsibility in this situation. If someone’s beyond aid, why offer any? If someone will survive no matter what; why offer unnecessary support? Either approach to denial has a pre-set goal: To morally or logistically excuse withdrawing aid to survivors, at every level in the Medical Industrial Complex or community. So, you can imagine the shock of most caregivers when I explain that glioblastoma is not terminal, in either a technical or practical sense, or instantly fatal.
Let’s discuss “terminal” for a moment, because a large part of my time in denial was spent obsessing over that term. So, there’s an objective portion of that term (a patient with an incurable, progressive illness) and a subjective component (typically, 12 months or less to live).
Except, as with everything else cancer-related, GBM is defined by exceptions. Yes, it’s incurable, but, as I’ve noted before, no cancer is curable. That distinction is a red herring the Medical Industrial Complex uses to present itself as more-competent than they actually are (and; cards on the table; I don’t think that there’s some sort of nefarious conspiracy that every single physician, biochemist, and biology professor is engaged in; I think that medicine is infected with the same corrosive elements we see in every institution run by humans — to make more money than the market would otherwise provide, to appear more competent, professional, and knowledgeable than they are, and to enjoy a level of prestige that’s unearned — the same issues one would expect to see in any other major profession, really).
Bickering over a term like “incurable” might seem petty, but, referring to my grandmother, none of her ailments are curable, either. Nobody in the family is moaning about that; we’re focused on getting her to the cardiologist, managing her weight, and the other, hard, unglamorous tasks involved in surviving a chronic condition. Similarly, cancer patients and practitioners shouldn’t get hung up on whether a cancer is curable or not. And, when you let go of that, suddenly, all cancers are terminal, it’s just a matter of putting in the work to make your body last longer than projected. Why do we reserve that terrifying label for the “bad” cancers?
Because the truth runs counter to the other popular narrative surrounding this disease — the “war metaphor.” Absolutely no one with a chronic disease likes this metaphor. It’s not even exclusively cancer patients; a very good friend of mine has a form of progressive blindness (if you’re a 21st century leper, after a while, your only friends are other lepers, because they already have cooties), and she’s fed up with it.
Not only is this denigrating and dehumanizing for those of us who “lose the battle,” it makes the process sound like it’s in some foreign country, rather than on your own block, with real people you know. It also frames outcomes in a simple binary, which isn’t an accurate view of the disease. In cancer, even in gliomas, “progression free survival” is a thing. This is the state in which you have an incurable disease, it’s still there, but it isn’t progressing. And that doesn’t neatly fit in with combat metaphors, because, in warfare, a stalemate is a form of losing (as Russia is discovering). In cancer, if you’re progression-free, you aren’t terminal — or you’ve put a pause on that status, anyway (see the loose definition above). And, with cancer, if you’re progression-free, you’re actually winning.
That’s the part that no one ever discusses with brain cancer. I’ve seen caregivers talk about extending life, but, again, if this is going to simply return again (and that’s all cancers), what’s the point? Well, this is the secret knowledge I knew before I was diagnosed. Biomedical research moves at a speed most people don’t appreciate.
The half-life of medical knowledge is four years. That means that if you make it to the four-year mark, there will be roughly twice as much data and information available in the decision-making process, and roughly twice as many treatments available. So, when you find yourself sobbing or throwing a temper tantrum in the cancer center (we’ve all been there, don’t worry), instead of going straight to denial, go to bargaining (another stage of grief) — “How do I get four more years, and remain a candidate for further treatment at that point?”
That’s the ugly little truth that the label “terminal” neatly covers — that this disease is much more-survivable than advertised, if you’re clever and make some informed decisions. I’ll add the grim caveat that, yeah, there are going to be plenty of cases where we die in a month or two, but that’s true of every single disease — even the “curable” ones (yes, people still occasionally die of pneumonia). But that’s a longer, harder conversation than society is apparently willing to have at this point.
