With sort-of apologies to Ben Williams, this is the condensed, updated seminal version of his work.
I was diagnosed on Nov. 10, 2017, two years ago. Only 8–12% of Glioblastoma patients last this long. I don’t know if Medium will let me list out the 450 million tiny, minute factors that allowed me to make it here, but I’ll try. Bear in mind that, even though I think this advice is applicable to a wide variety of cancers, I am only really qualified to give the advice that I needed in late 2017. If you are experiencing a medical emergency, hang up and dial 911.
Seek the very best practitioners. When you need new flooring, you usually get a few quotes. When looking for a new bar or restaurant, you probably do some research on Yelp. Yet, for some reason, after people hear the words, “Stage 4,” suddenly comparison shopping goes out the window, and we go for the hometown hero. This is possibly the single, greatest mistake cancer survivors make. I got neurosurgery/biospy at UCSF. I was treated post-surgically by a team of neurooncologists, raditiation oncologists, and psychiatrists at UCSD. Specialized medical practitioners know each other; I strongly suspect that my NO at UCSF was determined to send her prize-winning lab rat to someone who wouldn’t screw it all up (I don’t think she thinks of me that way, but I know she’s put in occasional extra hours on my behalf)(also, all of my physicians are academic physicians, and “The patient lingered for 14–24 months, as 90% tend to, before succumbing” is much less noteworthy than, “Patient was diagnosed, demanded to be on the most aggressive treatment possible, so we incorporated black magic into the treatment to keep a dead man walking, and he’s still walking.”)(In other words, my original NO has some connective tissue with the Warlocks and steered me toward them). If I weren’t already invested in the UC medical research system, I’d go to Anderson, MD, in Houston, Texas. A family friend was given just weeks to live in 2017 after melanoma spread to his bones. He is still alive. I know a guy who’s at the 14 month mark (I think). He is still alive. I know one incredible woman (J. Morris, of Our Brain Bank) who is over the three year mark, and, despite a recent recurrence, has doubled down, entered a clinical trial, and is still alive.
The average life expectancy of a newly-diagnosed GBM patient is 14–24 months. Obviously, from this point forward, I expect I will get a participation trophy in every single thing I do. I’m talking about a ribbon on my door just for opening it. I want speeding tickets torn up, debts immediately forgiven, the whole nine yards. I get that participation trophies are the ultimate Boomer vs Millennial symbol, but, here’s the thing: You actually do have to show up. The primary difference between dead people and the living is, they can no longer show up.
Get psychiatric help. It’s a cruel irony that, in order to survive an organic brain disease, you have to be at peak mental ability. I’ll get to nutrition and physical stuff shortly, but if you’re struggling with a life-limiting illness, chances are that you’re going to be depressed. Cancer treatments don’t really help the process, what with that whole “pain, exhaustion, and nausea” thing. I had a research psychologist and a psychiatric oncologist to consult with. And, yes, I am on a lot of psych drugs. You would be, too, if you’d survived three neurosurgeries (and a few of the things I’m on — like Remoran, CBD, and melatonin, are correlated with tumor suppression and/or sensitizing glioma cells to chemo). If cancer treatments fried your kidneys, no one would be judgemental if you were on dialysis, but we have a very unhealthy view of psychiatric disorders (while, ironically, unhealthily fetishizing health) that you won’t have room for if you want to last. If you have diabetes, insulin is a thing that works, even though bad diet is far more of a “choice” than getting cancer or depression is.
Brain cancer patients get the double-whammy of both cancer/end-of-life (well, not so far) mental issues, with organic brain disease/brain damage issues. Seeing a shrink and taking your pills might be a decent start to help with some of these.
Develop a healthier lifestyle. This one should seem obvious, but there are so many fad diets running around (backed up by error-riddled studies — if you feed mice nothing but corn, it doesn’t matter if it’s GMO or not; they’re going to be drowning in sugars)(which are bad for you), that when you’re told to eat healthier, you’re drowning in choices. Keto is the go-to cancer fad diet, because, people unfamiliar with clinical biochemistry believe, glucose fuels cancer cells. This is technically true, but it fuels most other cells in the body; and, by the time you have to worry about blood sugar, the cancer has successfully hijacked your body’s nutritional needs and has diverted them to itself (a process termed cachexia, which is why all the cancer survivors on your favorite Lifetime movies look like they’re starving — they actually are, on a biochemical level). I’ve seen some suggestions that 90% of your calories must be from fat or protein sources. The only convincing study I saw only added a median of four months to life expectancy, and required patients to cut out all carbohydrates from their diet. Because I’m in this thing to win it, and fruits and vegetables are delicious, I abandoned that one.
I do think that this, like studies suggesting high-dose melatonin are a causation/correlation error — if you’re getting enough sleep, you’re more-likely to be healthy, in general (and, the way data is gathered, if you slip in the shower or fall off a ladder and die, it’ll impact the statistics; so the data doesn’t really paint an accurate picture of what’s happening). If you can dramatically change your diet, there’s a chance you can rearrange your entire life to handle the most aggressive treatment available.
I was eventually eating 8–10 raw (or dried, depending on how I was feeling) fruits and vegetables a day, and going to the gym 3–6 times a week, with the idea that a high-fiber diet and upping my metabolism would keep my innards moving (chemo will constipate and dehydrate you, but you never hear about that — survivors always whine about hair loss), and dramatically increasing my metabolism would help me metabolise chemo faster, and keep me more comfortable (this wasn’t my idea; a research coordinator recommended it early on, and it worked so well that not only did I keep it up throughout treament, my oncologists got slightly suspicious about me not complaining of unmoving bowels). At one point, I timed it — I was literally spending two hours a day just chewing (and drinking coffee), and an hour in the gym. Which is miserable, to be fair, but it outweighed the misery when I wasn’t doing that stuff. But enough about me, let’s talk hair.
Get a hair alternative before your hair comes out. I’ve mentioned this before elsewhere, but the most-frequently-asked question is, “Will my hair fall out.” Yes. Bank on it. Figure out if you want a wig, hat, do-rag, beanie, whatever, well before you start treatment (my hair fell out around the fourth week), because you don’t want to end up in a panic at 9 pm on a Friday night. That’s how people end up with trilbies. I went with a Stetson Gallitan, after reading that a hat brim should be in proportion with a man’s shoulders. Which then required me to work out my shoulders to improve my profile. Yes, I am that vain. You will be, too, if you get weird, mangy streaks. Oddly enough, this actually improved my odds, I think — I started hearing about how many GBM patients go off of treatment or have a bad reaction, or their oncologists cut them off because they’re experiencing dangerous side effects. If you’re eating right, staying healthy, and looking healthy, chances are, that will be a self-fulfilling prophecy.
Find some local support. Because cancer survivors face an enormous amount of alienation and social stigma, we tend to be suspicious and isolated. That’s a bit of a mistake. Support groups for survivors may be somewhat hard to find, but it’s well worth your time, both for support, advice, and just to reassure you that you’re not alone or going mad (this might qualify as “getting psychiatric help,” but, it doesn’t always occur to survivors right off the bat to do this). At my support group a few weeks ago, another survivor got up suddenly to walk off a charley horse. He wasn’t the same age or cancer as me, but it was still enormously relieving to suddenly know I wasn’t the only one out there this happened to. It was even more relieving that everyone else started nodding. Being seriously sick in today’s health-and-youth-obsessed society is a tremendously isolating experience (being young and seriously sick is taboo). It’s more relieving than healthy people can ever really know to connect to people who’ve been there.
Gamble. I don’t mean “Go to Vegas,” although, if that’s your thing, it’s not like a retirement fund is a good investment at this point. Look into experimental treatments, if you have a disease that’s currently considered incurable. If it’s incurable, you know current treatments either aren’t going to work, or will likely be ineffective. Despite my Bioethics professor’s resounding statement, “Experimental options are to be considered a method of last resort, when all other options are exhausted!” that sort of hesitant, conservative mind-set toward medicine can get you killed. Especially since, “rapidly progressing disease” is usually a disqualifier for experimental treatments. In my case, I was tremendously fortunate in that all of my oncologists were on-board with this idea from the first minute, and I won the lottery, so to speak, getting into a trial with a drug that, according to the scuttlebutt on the cancerweb, is far, far more effective than initially advertised. Sometimes you get lucky.
Look at it this way. What’s the worst thing that can happen? You’ll die. Which is also the default setting. I know one woman who had a dangerous reaction to chemo (which is probably more dangerous than continuing chemo, but that’s a conversation for you and your oncologists) on the third or fourth cycle, and switched to ultra-high-dosage Full Extract Cannabis Oil (FECO)(AKA “Rick Simpson Oil”)(there are some promising initial studies linking it to better outcomes, and the Australian government has approved trials for using it in conjunction with Standard of Care). She’s 12 months post-diagnosis, and is still alive. Ben Williams discusses “repurposing” existing drugs and chemo agents as part of his strategy to survive glioblastoma in 1995. He is still alive.
The experience will change you. After years of brain damage, I was horrified at the prospect of “chemo brain,” because it seemed almost like a horrible new thing to add to the list of treatment-induced symptoms and complications. We need to talk about this like we talk about red-eye flights, surviving the Holocaust, or a military deployment to Afghanistan. It’s a grueling, stressful, dangerous experience that’s going to change you, just because it’s a painful, dangerous, awful experience; even if no chemicals actually touch your brain. I’ve been in touch with other Marizomib patients who complained about severe “chemo brain,” which, I guess I got (I still have), but I always wrote it off as “pain, fatigue, and nausea.” If you get a stomach flu, you’re not going to be a peak mental abilities, but there are other, more obvious reasons than “unexplained chemicals.” I still have “chemo brain,” but I’d be inclined to write that off as, “still exhausted and recovering from the experience of being regularly poisoned for a year.”
Embrace the pain and awfulness, don’t avoid it. One of the biggest questions I’m asked by other GBM survivors and care-takers is how I stayed positive, or how they can get “their” survivors’ outlook to improve. Simple answer: you can’t. The first few weeks of treatment, I probably wasn’t sunshine and daisies, either. It’s a helluva thing to go from, “Probably mostly-healthy” to, “Maybe a few years left, best-case scenario” in the space of a few weeks. Psychologically, we’re not capable of processing our mortality that quickly. What I did do — the night before I started radiation — was compile a nuclear-war-themed playlist for radiation. That mentality of “This is far too awful to take seriously” eventually dipped into gloomy and negative, and developed into “The Martian” (that was a direct inspiration once I realized I was probably the first person with GBM on the maximum MRZ dosage — suddenly, you’re the first person to do a lot of stuff — “It’s a strange feeling. Everywhere I go, I’m the first. Step outside the rover? First guy ever to be there! Climb a hill? First guy to climb that hill! Kick a rock? That rock hadn’t moved in a million years! I’m the first guy to drive long-distance on Mars. The first guy to spend more than thirty-one sols on Mars. The first guy to grow crops on Mars. First, first, first!”). I don’t know if I’ve made it through all stages of the Kubler Ross Model, but I don’t feel too angry or depressed (most days). Maybe I’ve just boomeranged back to “Denial.”
Another break-through came when I realized that all the pain and misery I felt must also be “felt” (inasmuch as unsentient cells that have become parasitic invaders can feel) by the cancer. Once I realized that, pain and misery were no longer glitches; they were features.
A lot of brain tumor survivors ask me if there will be a “cure” soon, like there are for other cancers, which belies a fundamental misunderstanding about how cancer works. It’s caused by acquired mutations, and, yeah, some of us have a genetic predisposition to it, but it only requires a mutation of two genes in any given cell. If it seems like you could just avoid every known carcinogen, let me remind you that oxygen and sunlight are carcinogenic. The only people who don’t get cancer are people who die before they get the chance to develop it. People with “curable” cancers don’t really get cured, they just successfully have enough cells with certain biochemical markers on them wiped out. And then they get to play the waiting game. The survivor’s goal should not be to “cure” or “beat” cancer, any more than schizophrenics or manic-depressives or diabetics “beat” or “cure” their diseases. It’s a lifetime commitment; you aggressively monitor and manage the disease, and figure out how to live a decent life around all that. That’s enormously unfair and instantly makes you one of the world’s most-vulnerable minorities (all that’s required to kill me before age 40 is a slight decrease in funding to biomedical research and/or bringing back the “pre-existing conditions clause” of health-insurance), but you can, to quote one of my “cancer mentors,” “have a good life even with cancer, if you have the will.”
Document and share every single second. I saw something online a few months ago, “You never know who will be inspired by your struggles.” There are so few public GBM patients, I started a blog about treatment and used my Instagram account to photograph me getting infusions, because this is what I needed to see and know before it actually happened to me, and I figured that if this was it, my one score and a dozen, I’d at least leave some sort of trail for the next folks in line. And, slowly, weirdly, other brain tumor and brain cancer survivors and caretakers started contacting me for advice/support/whatever. I tried to give whatever I could, wherever possible, because it’s a shit situation for all involved. But the stigma and mystique surrounding all cancers are unnecessary, and cause demonstrable problems in the newly-diagnosed that are largely-unnecessary. There’s a horrifying amount of luck involved, to be sure, but the skills required to survive cancer are, fortunately, pretty quickly acquired, which is the message everyone needs to know, going in. As you’ll discover.