So, it was two years ago tomorrow that I had neurosurgery #3. And it was three years and seven months before then that I had neurosurgery #2. And it was 12 years before then that I had neurosurgery #1. If you feel the need to break into the chorus from Arlo Guthrie’s immortal “Alice’s Restaurant” at any point, feel free.
So, most cancer stories involve a set of easily-remembered anniversaries — onset of disease, various misdiagnoses, “I knew something was really wrong with me” moment, correct diagnosis, then treatment, then happily ever after. That’s the traditional format.
I am not a traditionalist, especially since, traditionally, people with my diagnosis are usually dead by now. One of my cancer friends, Matt, recently started gathering donations for a kid with leukemia who developed it at 17. Which is how old I was when I got my first brain tumor. The technology to help me recover from that one wouldn’t actually be developed for a full decade after that surgery, and I made it through my 20’s with a full three standard deviations below-normal electrical output in my right cerebral hemisphere. I realize that neurocognitive abilities, human vocabulary, and statistics don’t always directly translate well to the general populace, but, if we were talking about IQ, three standard deviations translates into an IQ of 55. Forrest Gump’s IQ was 75. Fortunately, I stayed away from IQ tests during that period; unfortunately, we live in a society where your fate is determined by standardized tests, so, my ambitions and dreams were more or less shelved after that, try though I did to resist it.
BUT, this isn’t about that particular tale of woe. It’s about how I wound up spending Halloween in San Francisco two years ago with a two-drink maximum, because I had to be up at 5 am the next morning. After you get any sort of cancer diagnosis (and brain tumors are never technically cancer, because cancer is traditionally defined as the ability of the disease to metastasize to distal organs; because the central nervous system is completely walled off anatomically and biochemically from the rest of the body, it’s never cancer). After you get the first one, you’re tagged and tracked, so to speak, for the rest of life. Since March 31, 2002 (the last day I was a Healthy Person), the very longest I’ve gone between MRIs is maybe 14 months. Which is how they found Tumor #2 in 2013 (I had to wait a year for ACA protections to kick in so I could, y’know, afford that whole “life-saving surgery” thing)(I know from tumor #1 that, prior to the ACA, all preventative surgeries are considered “elective,”)(you might want to contemplate the phrase, “elective brain surgery” the next time you’re mentally preparing yourself for a confrontation you’ve been dreading)(but I digress). Whereas Tumor #1 was extremely benign and usually considered definitively treated by surgical resection, Tumor #2 was an astrocytoma, which is a bit like that shark in Jaws — it tends to come back bigger, badder, and worse. Which, it did, in early 2017. Keep in mind that, apart from the side-effects of treatment and some abnormal EEG readings (which probably translated into further academic disappointments)(this is why Google doesn’t use GPA or tests in hiring people — they don’t really predict for things like, “accidentally stepped in front of a bus and never made it to work,” or, “proposed to boyfriend in the midst of a pregnancy scare, never came to work the following month.”), I had no symptoms, so I get to skip the usual, “And then I started vomiting blood/my innards hurt like hell” part of the cancer experience.
Unfortunately, medical history tends to be disturbingly accurate in predicting fate, and people with low-grade astrocytoma recurrences tend to develop high-grade, fatal tumors. Which is why medical humans tend to recommend aggressive Standard of Care treatment in such cases — surgery, chemo, radiation, the full nine yards. However, because there is no definitive cure for recurrent low-grade brain tumors, I got a little bit too clever and elected to try experimental treatment. Cancer survival stories tend to be filled with various minor triumphs and tragedies, punctuated occasionally by gut-dropping catastrophes or mind-blowing victories. That was my first really, massive “Whoopsie” moment.
Due to the rules surrounding clinical trials; there are only so many patients allowed in a trial at any given time, and, since most trials are structured to incorporate Standard of Care and various required samples and tests, it’s usually structured so that you will do X treatment/test/whatever within Y days of another treatment/test/whatever. I guess one of the folks ahead of me was dragging their feet about getting neurosurgery, which caused a back-up of seven months. When I went in for my preliminary scan, the tumor showed vascularization — the hallmark of high-grade tumors and/or metastatic cancer. Which, ironically, disqualified me from the clinical trial.
Lesson#1: If you are ever offered a slot in a clinical trial, I’d recommend looking into it. However, if there is a waiting period of more than a week, I’d recommend looking elsewhere.
I do remember my neurooncologist coming in and asking me if I was comfortable, before she started the briefing. She went over the details in as empathetic and kindly a manner as one probably could, but I was still kind of shaken after that.
Lesson #2: If you are a clinician, and you have to deliver bad news, never, ever, EVER, deliver bad news by asking the patient if there’s anything you can do for them. It is the medical equivalent of the “Did it hurt when you fell from heaven” pick-up line. It’s trite and outdated, at best; at worst, you’re going to trigger the patient, and they won’t remember anything pertinent after that.
After getting the bad news that I’d need surgery, radiation, chemotherapy, and all the trimmings, neurosurgery was scheduled for the next week. Radiation and chemo to be scheduled later, post-biopsy results. Late-October is the “discovery date;” my first, “I am fucked” moment happened shortly after my oncologist left the room to track down my surgeon’s case manager and my mother said, “Her mascara was running.”
Fast forward a week or so ahead. Today, two years ago. Robin Williams once said that Halloween is almost a redundant holiday in San Francisco; he’s not far-off. If you’re ever going in to neurosurgery, step 1 is to get an MRI and get various weird little surgical-aid “dots” (think of small, rubbery band-aids, and it’s not far off). On your head. If you’re wondering how they stay on your head, allow me to introduce you to two terrifying words, “strategic shaving.” And you don’t wash your hair that night, either. Good news; when the little hair plug/surgery helpers inevitably fall off, they’re usually still sticky enough to put back on.
Thankfully, because it was San Francisco on Halloween, no one gave me a second glance. Unfortunately, it was San Francisco on Halloween, I could not drink or eat anything after midnight, and I had to be mostly-sober the next godawful morning. In a week defined by the misery of anticipation, it was a singularly unpleasant evening.
Because San Francisco is the greatest city in the world, even mostly-sober and scared shitless, you can get a good story out of any visit. The City was, as ever, gracious and obliging in giving me one; toward the end of the evening (because I had to be up Godawful Early the next morning, “end of the evening” was maybe 9 pm), I encountered some trick-or-treating drag queens (of course I did). Sort of. I’m not sure there’s a whole lot of gender fluidity in “bearded men in tutus,” but I’m not going to be judgmental.
Anyway, while discussing the sorts of things you discuss with grown men trick or treating in unconvincing drag, it came out that I’m a chronic brain tumor patient about to go in for a routine mental flossing, and one of the guys is a Vietnam vet with a leg amputation. This could only happen in San Francisco on Halloween:
SELF: Yeah, I’m bummed out because I have an extremely dangerous and expensive surgery tomorrow that’s not considered curative for my condition, just the first step.
RANDOM DUDE IN A DRESS: Want to rub my peg leg for luck?
I’m taking some liberties with that recreated dialog, but not as many as you’d think. And if it seems like I’m dwelling a bit on Halloween, you’ll have to forgive me, it was literally the very last day I’ve felt — physically — completely fine.
The following morning/much later that night (you don’t really sleep before a life-changing surgery), I was rolled into the OR. That was also the last time I had complete sensations in my left side. At some later date — possibly hours or days, it’s hard to tell when you’re drugged to the gills (speaking of which, in terms of pain, the most recent surgery was easily the most painful, not only because the only sensation on my left side for a day or two after that was “neuralgia,” but because we got scared of opiates, so we replaced them, as pain-killers, with steroids — not the sexy bodybuilder kind, just the immunosuppressant kind)(effectively, as a society, we’ve said, “Enough of the effective, fairly-safe, potentially-addictive, dangerous if misused or improperly dosed stuff; we’d prefer far more dangerous, absolutely-addictive, not effective painkillers that make patients irritable, tense, and fat.”)(once the weight-gain effects of dexamethasone and progesterone get publicized, we’ll be back to fentanyl) I sort of came to with a massive headache and near-total numbness on the left side of my body. My memories of the following few weeks were, understandably, hazy, but some “greatest hits” moments include:
- Two residents with blood on their trousers explaining how well the surgery went. They reluctantly confirmed that, yes, it was my blood.
Lesson #3: If you are a clinician and you have noticeable bloodstains on your clothing, you might want to change before seeing patients. Particularly if it’s the patient’s blood on your clothes.
- My neurosurgeon explaining how well the surgery went, it appeared they’d gotten all of the tumor before it could metastasize (in the world of brain tumors, this is not an insignificant victory), but they weren’t sure of what the diagnosis was, and were waiting on the pathology report.
- At least one grand mal seizure (possibly two, possibly a grand mal and a petite mal/partial seizure; my memory’s a little hazy), as a result of weaning me off of steroids too quickly. Which is why I’m now on anti-seizure meds for the rest of my life, which seems rather unfair, to me, because it was their fault. But I digress.
- Getting “the call” on November 10 after one of my seizures that the pathologists had decided to give my tumor a grade IV, making it, technically, glioblastoma. Again, that, is traditionally a terminal diagnosis; see that bit about me being decidedly non-traditional.
The standard date from which all others are measured is the date of diagnosis. Of course, the standard progression of the disease is, inexplicable signs/symptoms, misdiagnosis, tests, diagnosis, treatment. For me it went, misdiagnosis, treatment (sort of; neurosurgery isn’t the definitive treatment for GBM, but it’s usually the first step in Standard of Care), tests, inexplicable signs/symptoms, diagnosis, and further treatment (more on that in a second). November 2017 was not a good month for me, what can I say?
At this point, faced with the inevitable horrors of chemoradiation and other post-surgical care, I got transferred to a cancer center a little closer to home, in San Diego. It’s possible you’ve heard the idiom, “Never drive faster than your guardian angel can fly;” I’m reasonably certain mine can move at warp speed, because, literally on Day 1 of post-surgical treatment, the individual I eventually referred to in my blog as “Junior Warlock” (if, like my stepmother, you think it’s disrespectful to refer to my physicians like that, I’d like to point out that it retained their anonymity and allowed me to record events in something like real time; also, they were using black magic to keep a dead man walking, if that’s not some dark wizard shit, I don’t know what is)(BTW, that last bit is a line all of my chronically-ill friends immediately appreciate; if you’re puzzled, you probably haven’t pleaded with an insurance company to release your chemo), came into the exam room with an experimental protocol for a Phase I trial of an experimental drug called Marizomib in his hand. I knew from previous experience that once a treatment option is removed from the table, it’s not coming back. So I leapt at it. And, as promised, it was absolutely miserable. For over a year, I got experimental infusions (and Temodar), and, by the end, it was about as much fun as you’d imagine. On the other hand, I was very uncertain I’d be here after that year.
I’ve been off chemo for ten months or so, and it’s not as bad as being on chemo, but the sheer exhaustion and fatigue of going from a year of near-constant adrenaline overdose to, well, not-existentially-threatened is starting to catch up with me.
On the other hand, I’ll be at two years post-diagnosis in ten days, with no recurrences or metastases (yet), and very few fatal side effects, exclusively with chemo, radiation, and surgery, which is almost unheard of in glioblastoma patients, and keeps a few treatment options, like Lomustin (more chemo) and/or Optune (a biomedical device designed to slow/disrupt tumor growth) on the table, so, go me, I guess.