We’re going to live to be 100, if science keeps going.
It is 2000 or 2001, and this cheerful exhortation comes from my best friend. Admittedly, this rosy prediction is tinged by the immortality that can only come from teenage boys. At the time, it didn’t seem an unrealistic prediction; we were young, healthy; tanks hadn’t started rolling into central Asia, and the juggernaut of the Internet economy was just starting. Even factoring in the fact that all teenage boys are utter morons, it wasn’t as hilariously outlandish at the time as it became in retrospect.
Before life and death caught up with me.
I think your chances are good. You have an ATRX gene, which responds better-than-average to standard treatment. Five-year overall survival for people with this mutation is 30–50%
This is late 2017, and my neurooncologist (One of them; I collect academic physicians the same way that television actors collect vintage cars) is telling me I have a 50% chance of seeing 2023. As usual, context is critical, and it wasn’t until much later that I realized the vast majority of studies tend to stop tracking survivors at the five-year mark, which tends to skew statistics surrounding ten-year survival.
The median life expectancy for IDH mutation patients is 17–24 months.
This rosy prediction is from my radiation oncologist — who is probably a kinder, warmer person than Mother Theresa (I’m not exaggerating that at all; she really is a sweetheart of a person)(also, in case you or your staff are reading; hi, Dr. H). She only tells me this after I spent months pestering all of my oncologists for solid prognoses, and she’s evaded the question before by pointing out, as most of my oncologists have, that there are so few recorded cases of glioblastoma, and far fewer that survive treatment that I’m almost medically unique at this point. I choose to take her subtext — I’m in uncharted territory, and the usual statistics are becoming less applicable to me — rather than the statement, which predicted my death in November. Obviously, I’m alive (maybe; it’s a philosophical grey area), which leads to four potential outcomes of my life:
- I live a long-ish life (for me, that’s now making it to 50) and am killed by some other malady or complication from treatment before the glioblastoma comes back and kills me.
- I live a shortened life punctuated by increasingly aggressive, dangerous treatment before succumbing.
- The disease comes roaring back like measles, worse than before, and kills me in a year or less.
- As someone who has undergone extraordinarily rare, experimental, and dangerous treatment, I live a long, mundane life before being shot by a jealous husband at age 90 (there’s a correlation between brain disease and dementia (No shit, Sherlock — organic brain diseases linked to other organic brain diseases), my grandmother has been diagnosed with dementia, and I’d be fine with succumbing after 90 years on this delightful, magical little sphere).
Obviously, I’m hoping for Door #4 there, but I should point out that, although it’s a distinct possibility, it isn’t a strong probability.
It looks like we lost Sonja today.
God damn it. I’ve stopped trying to keep track of other brain cancer survivors I’ve outlived, at this point. They were undoubtedly wonderful, vibrant people in life; in death, I’m starting to feel the weight of trying to carry their memories.
Hey, this is Pat, your plastic pal who’s fun to be with, from the [Redacted] Support group. Just checking in that you’re still out there.
So sorry to tell you pat that Sonja passed away last night. We wish you the best of luck
Sonja wasn’t even in her late 40s. God damn it.
Even though I’m still praying I’ll live to a ripe old age, I’m no longer certain I’d cherish every moment the way I thought I would when my oncologists upgraded me to “No Evidence of Disease” a year ago (and, to quell any potential concerns, I’m still NED — although my inability to sprint without an ankle brace and continuing fatigue illustrate the gulf between an MRI scan and life; I’m mostly writing about other people’s deaths and the effect that for everyone in a similar situation). I’m starting to feel like the last koala that got loaded onto a fire evacuation helicopter and sent to the Sidney Zoo.
I’ve experienced survivor’s guilt. I’m familiar with it. I’m good at it. This is a new, far more horrible condition that borders on panic. Everyone is dying. I might be the last one left on Planet Cancer at the current rate.
One thing all the education and knowledge in the world can never prepare you for is an incessant series of gut-dropping moments when people with the same diagnosis — and same prognosis — as you are diagnosed and die within the same time frame that you’re in treatment.
I have a friend from grad school whose father died from GBM; she said, that, horrible as it was, it was almost a mercy that this disease (or set of diseases, to be more accurate) moves so much faster than other cancers. I understand that no one wants to whither away like we’ve seen on made-for-TV specials. Knowing what the end looks like with this disease doesn’t make it seem kind, though. I obviously don’t know the exact details of my own particular demise if the battle goes ill, but I have a good outline. Nausea. Seizures. Confusion. Expressive aphasia. Dramatic, permanent personality and emotional changes. When I was having full-colour hallucinogenic nightmares (a delightful side effect of the experimental chemo), nothing I dreamt of could possibly equal what the end with this disease looks like.
I hate warfare analogies in cancer, unless we’re talking about nuclear holocaust. That seems much more apt — 95% of the population wiped out in a few hellish weeks, and the dwindling survivors crawl out from nuclear bunkers to contend with cannibals, mutants, and Australians.
The sheer volume, speed, and horror of death that comes with this disease is so far beyond human comprehension that it does feel, at times, as if my body will outlast my mind and soul by years. I take it back; cancer is war; it’s the opening minute of Saving Private Ryan, when everyone on screen is sublimated into a red mist by German gunfire and mortars.
Brain cancer patients are horribly, unbelievably rare. Amongst clinical researchers, we’re actually a precious commodity. And we’re getting rarer by the day. According to most statistics I’ve seen, about 190 people every day are diagnosed with a brain tumor. According to the statistics from the American Brain Tumor Association, the average life expectancy of those 190 people is 18 months. I’m 17 years and six months out from my first tumor; 27 months out from the most recent (glioblastoma).
Mri results today. Cancer has progressed and body has stopped responding to Temodar.
God damn it.