A quick guide to having oligodendroglioma

Oligodendroglioma is the fancy name for a kind of brain tumour with a certain molecular composition that you presumably don’t care about. I was diagnosed with it about 4 months ago. I wanted to write something about my experiences so far to get it out of my head, and I wanted to put it in front of you because someday it might help a fellow Googler.

Previously this would have been ridiculous to me, because who the hell Googles an esoteric health condition and comes across a random blog post written by some stranger on the internet? Well, that was me, and I am you.

One important note, before we get into things: Brain cancer is the cool cancer. It’s poorly understood, doesn’t behave like other cancers, and is different for everyone.

A lot of other patients tell me they can’t remember the whole word: “oligodendroglioma”. I’m like, what, you can’t take the time to remember the name of the thing that’s supposed to kill you one day? Early on, I came up with a short song to help remember it: “Oligodendroglioma / It’s oligodendroglioma / It’s better than being in Oklahoma / It’s oligodendroglioma.” I am not a songwriter.

How to get brain cancer

People who get diagnosed with brain cancer basically fall into 3 camps: (a) people who have neurological symptoms, (b) people for whom it’s an incidental finding when they get scanned for something else, and (c) people who are completely fine until one day they have a full-blown, spaz-out, drive-the-car-off-a-cliff seizure. I was in the final camp. Luckily, I was in bed at the time. Personally, I remember nothing for several hours until I eventually came to somewhere in the hospital. My wife, who called the paramedics while dealing with our wailing 2-year old, has PTSD though.

Waking up in the hospital seems to have been a gradual process, because I don’t recall a moment where I was like, “What the hell, I’m in the hospital?” I believe I had some powerful anti-seizure narcotics in my veins because when the resident came in and said, “This is cancer”, I kind of laughed and thought about how funny it is that everyone’s getting cancer these days.

I then had a little over a month between being released from the hospital and my subsequent visit with a neurosurgeon, which gave me sufficient time to Google absolutely everything about the situation. People tell you not to rely on Doctor Google, but the alternative to this is to know nothing and be completely uninformed, which is not a hot idea for a disease where the neurosurgeon says, “Well we can’t tell you what to do for sure, so you tell us.”

MRIs are amazing and informative, but ultimately they produce a bunch of blurry pictures. So they couldn’t say precisely what I had; probably a glioma, but also maybe an infection, or inflammation, or a congenital defect. Cool story from my parents: one time a family friend was diagnosed with a brain tumour and rushed into surgery. Upon extracting the tumor, they learned that it was in fact not a tumour, but was a parasite from Mexico that hitched a ride on her salad and landed in her head. That’s a fun image to carry around with you.

So naturally you want to get a biopsy, of course, but biopsying something in your brain is still brain surgery. And if you’re getting brain surgery, you kind of want to want to get it all done at once, rather than nipping back in a few months down the line because you forgot your keys. Complicating things is the fact that the tumor can be heterogeneous, so a biopsy of one bit isn’t reliable as a full removal and testing the whole thing. Furthermore, in the case of a low-grade glioma, there’s not a good way to tell exactly when the risks of brain surgery outweigh the risks of waiting and watching to see how things develop. So, two alternative worst cases: you do nothing, the glioma is real and it grows until removing it carries even more risk, OR the glioma is nothing, but the brain surgery itself screws you up. You feeling lucky, punk?

“Bad news, son — you’ve got a tangerine-sized bit of white in your black.”

Brain surgery: It’s literally brain surgery

I remember hearing about brain surgery yeeeeears ago. I discovered that the patients are awake for the procedure. “Man alive,” I thought, “Thank god that’s never going to be a thing that happens to me.”

Here’s my big spiel on support groups and hearing other people’s stories. It’s very reasonable to talk to people and gather these experiences. The more you know about how things might turn out, the better. But it’s absolutely crucial to bear in mind that everyone’s brain is unique and the range of outcomes is enormous. There are a ton of people with absolutely horrendous stories about being wildly damaged for the rest of their lives by their surgery. I read the words “you’re never the same after brain surgery” enough times to legitimately believe that even if I did recover, I would always be fundamentally altered. Quick wrap up to my surgery story: I’m fine. In fact, I feel no different than I used to. I have no idea what the real statistical breakdown on major vs minor vs real vs perceived effects are, but I’m at least here to say that the surgery can be — relatively speaking — a walk in the park. Also, a couple of additional words about Facebook support groups in particular: 1) people tend to go online to complain about their problems, not to celebrate the fact that they don’t have any, and 2) it’s great that you believe in the power of christ and prayers but please shut up about it.

If someone like me in the past is reading this, you probably want to know about the “awake” part of the awake surgery. I was pretty stressed about this until I read a lot of accounts of it, including a study from Brazil where the majority of the patients reported a better experience with awake surgery than asleep surgery (because of the lighter anaesthetic). The experience was, in fact, totally cool, and anaesthesiologists are goddamn wizards. Of course it helps to have your surgery done at one of the top hospitals for brain stuff in the country. Especially by a surgeon whose top research interests include exactly what you’ve got. If you plan to get diagnosed with a rare and complex disease, urban life is the way to go.

Actually, technically speaking, I wasn’t fine. I actually did fall into the <10% who have deficits, and was unable to communicate for a little while. But that only lasted a week or so. It also occurred while I was euphorically riding a dexamethasone high, so everything was just fabulous (I also ate sooooo much.) I also had the incredible support from a ton of wonderful people in my life, so this was a pretty easy ride to take.

Before surgery, I asked the team to take a photo of me while I was awake. Apparently this was a surprise, which is a surprise to me, because getting a photo of a moment like that is just a social media motherlode. Getting this taken is probably the greatest accomplishment of my life, and this article is really just a convincing wrapper around posting it online.

There’s a reverse view of this which consists of a closeup on my fully unpeeled brain, but it feels a little NSFW.

Poison pills and deadly radiation

Gearing up for brain surgery tends to put one in a bit of a tizzy. At the same time, you’re being told to put the brakes on long term thinking until the biopsy results come back. It’s a typical case of crossing a bridge when you get into it, except in this case, your view of the bridge is blocked by a mountain range.

Getting surgery done is a pretty short term endeavour. You make up your mind, you freak out, you get it done, you recover. It kind of blew me away after the fact to realize that I went from diagnosis to full-ish recovery in only 4 months. After that comes… the rest of your life. And surprise! Now that you have cancer, the rest of your life is going to be filled with having cancer.

Seems kind of obvious, but it’s hard to keep the omniscient narrator perspective in mind when you’re in the middle of it. I went to all my discussions with my oncologists pretty in the know, and didn’t leave with any information that was particularly new to me. Nevertheless, the day that I had to pick up my first round of chemotherapy drugs, my brain more or less shut down. (Yup, chemotherapy comes in pills you can take at home now — which is also not covered by most Canadian health plans. That’s a whole separate post.) Emotionally, I had already been through the wringer and emerged successfully. I had not prepared myself to go directly back into the wringer, except now the wringer is forever and ever until you die.

I’ve heard my wife talk about Grey’s Anatomy enough to figure I know something about cancer. Apparently brain cancers are different. They don’t go into remission; the best you can hope for is long-term stability (no growth, no shrinkage.) I’m told a recurrence is *ahem* “expected”. But it’s also slow growing, so that’ll happen in, oh… five, ten years. Staring down that particular tunnel is what will ultimately cost you the bulk of your therapy bills to get through. And since it’s such a long ass time, you might want to look into your coverage.

As I write this, I’m 1 month into my 12 months chemo regimen. At some point down the line, someone’s going to try to convince me to get radiation done, and I’ll have to make a decision there. In the meantime, I have a lot of choices to make about which para-medical pseudo-scientific mushroom-based alternative therapies to try eating/smoking/grinding into a powder and sprinkling on my pillow. The good news is, there’s not much of a rush on it.

Writing texts with aphasia. I swear to you, this made ABSOLUTE SENSE to me at the time.

This is what will kill you, unless it doesn’t

I’ve been spending a lot of time grappling with all these developments, and what it means for my life. In a messed-up way, it’s kind of easier to deal with a more dire prognosis, because with a few years left you know you have to shake things up. From the age of 40, with a life expectancy of 15+ years, you’re looking at a terminal case of… being alive? Nobody can even envision 15 years in the future, let alone compare the prospect of being alive vs dead in it.

When trying to evaluate my lot in life, I’ve thought a lot about people with various congenital issues that probably predispose them to a shorter life: heart conditions, BRCA gene carriers, anybody with a parent who has Huntington’s. How many people are there like that? How many people are like that who we interact with constantly? The odds for brain cancer are very slim, but cumulatively the odds for everything that can cut your life short are a lot higher. How high, though? Should I feel lonely, or is this just a common human experience?

Within my middle-class knowledge-working urban-millennial cultural bubble, I feel like we’re not too hot on talking about how our bodies are failing us. Partly because it’s icky, partly as a weird work ethic thing, and partly because it’s just kind of a depressing reality to acknowledge. After I started telling the world about my condition, people started opening up to me about their health problems. I learned about several cancer incidents that I would have otherwise never known about. This is great and I applaud these people, but I’m still left wondering how many others are holding onto similar secrets.

I get that it’s partly a privacy thing, and people tend to assume that someone going through something like this doesn’t want to keep talking about it. Maybe it’s just because I’m weird, but this is entirely false for me. Believe it or not, this is the main subject on my mind these days, and I’m interested in discussing it. Usually I don’t because I assume people don’t want me to spontaneously launch into a complex dissection of my personal issues, so there’s definitely some blame on my side here. Still, that doesn’t explain the tendency of many to actively suppress the conversation beyond, “Brain surgery, sounds rough, all the best.”

Partly this post is a form of self-therapy, partly it’s an attempt to help others. Both of these really come from the same place. Finding myself in strange, uncharted waters, with no good reference points to reflect my experience, I decided to write something that communicated some part of it. I know this the kind of thing I’d love to have found a couple of months ago; I probably still would. I also know that this experience isn’t radically different from what lots of other people with a variety of different conditions probably go through. The problem is that I wouldn’t know.

A lot of people say to view this as a chronic condition rather than a terminal illness. That sounds simple, but it’s a big shift in thinking. I don’t love it. A terminal illness is a call to action, but a chronic condition is an unending impediment to be managed. Maybe it’s just because I’m also hitting middle-aged and contemplating the slow collapse of my mind and body.

Actually, the median age for oligodendroglioma diagnoses is around 40, so I’m not alone in this. To people in the same situation as me, the lesson is: everyone’s body is going to slowly turn to mush, you’re just going to do it by way of cancer. Everybody’s cabinet is slowly getting filled with prescriptions, yours is just getting filled with chemo drugs. Everybody’s gonna die, you just know how. I guess that’s part of why people don’t like talking about this stuff.

But to conclude on a positive note: you’ve got brain cancer! Talk about a surefire way to get out of just about anything. Late for something? Brain cancer. Forgot something? Brain cancer. Can’t remember someone’s name? Well, that might actually be the brain cancer. Nobody else out there actually knows how this stuff works — so if you’ve got it, milk it, baby.

The Appendixy Bit

Like I said, I read a lot of online papers. Most of them I forget the specifics of, but these ones stood out enough to remember.

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