HERE HE GOES AGAIN, writing about his brain tumor. Yeah, deal with it.

When I really get into it, I really get into it. Telling the story, I mean. It’s a worst case scenario. It’s the last thing you want your doctor to say to you. I have not written extensively about my experience, because it was always too raw, too recent. I was also heavily discouraged from dwelling on it by people close to me, and for good reason. There’s not much to be gained by going over it again and again in my mind, and there is a tendency to become known as the Guy Who Had a Brain Tumor. I don’t want to be that guy, but there is something tempting about it.

I know I’ve written about this before, but I can’t find it, so you’ll have to suffer through it again, but there’s a scene in the X-Files where Mulder and Scully are on an island watching for the appearance of a monster (because of course they are) and Mulder talks about having a peg leg and I’ll give you the option to just watch the scene for yourself and enjoy the wonderful writing and performances. This is the X-Files at its greatest. Anyway, here’s what he says:

I’m not being flippant, I’ve given this a lot of thought. I mean, if you have a peg leg or hooks for hands then maybe it’s enough to simply keep on living. You know, bravely facing life with your disability. But without these things you’re actually meant to make something of your life, achieve something earn a raise, wear a necktie.

Once you get cancer, you get to be a Cancer Guy. I beat cancer. Anything else I do is gravy. It’s my peg leg.

This very idea is abhorrent to some people, but it’s not to me. It’s tempting, as someone who has trouble imagining a future where he lives up to the dreams he had as a kid. I used to fantasize about going on Letterman. I still find myself retreating to those fantasies even now, long after his show is over, and imagining how witty and wonderful I would have been. I will never be Tom Clancy, Michael Crichton, Neil Gaiman, or Terry Pratchett, but I can be Cancer Guy. That’s easy. I don’t have to live up to anything, I just have to get through Tuesday. What an accomplishment!

You’re so brave

I’ve heard that before. I’m not brave. I am, at my best, a coward. I would never intentionally subject myself to violence. I have never picked a fight. I would never defend a woman’s honor with a physical altercation. Before he was rightly exposed as a sex pest, Louis CK had a scene in his TV show where he gets into a verbal argument with some teenagers, and rather than escalate, he retreats. His date admits to finding him less attractive after that, which is a fear that all men have, maybe the most primal fear of all, that a woman is going to make him feel like less than the man he believes he is. No man wants to appear weak in front of a woman he is trying to impress, or, perhaps, any woman. I have no such fear. In the words of many great men, feet don’t fail me now. Good luck.

My point is this: I wasn’t brave. I was barely conscious. All I ever had to do was lie there. Everybody else did the hard work of fixing my cancer.

At least it’s benign

People love to say this to people who get tumors. I’m sure I’ve said it, too. It’s a comforting thought, that cancer comes in two flavors and one of them is really bad and the other one is fine, like a hangnail. I think it lets people come to terms with the inevitability of cancer in their own lives, and how a benign tumor is the preferable diagnosis.

I mean, yes. For sure. If you’re going to get a cancer, get the benign one.

Cancer isn’t binary. We’ve lulled ourselves into a weird kind of thinking where it is, but it isn’t. Tumors can turn bad. They can go away and come back. But a benign tumor in the wrong place can still kill you. If my tumor had appeared in a different part of my brain, it would have been inoperable. It wouldn’t have mattered at all if it had been benign, it would kill me just as dead as a malignant one, except it would probably take longer, and it would be excruciating.

People close to me, and people I talked to about my experience, like to remind me that I didn’t really have cancer, I guess because I didn’t die from it and it didn’t spread. But the thundering reality is that I did have cancer, it could come back, and when cancer comes back it’s always worse than the first time. I think maybe they like to say I didn’t really have cancer because they think I’m just being dramatic (fair, I have a tendency), but also I think they could be saying it to reassure themselves. I didn’t really have cancer. I’m not going to die yet. They can stop worrying.

I’ve spent a lot of time here writing about what it’s like to have a brain tumor without actually writing about what it’s like to have a brain tumor. I’m going to write a book (actual questions I’ve been asked are “why would you write a book about that? Who wants to read that?” which are questions you could ask about any book ever written). Others have told me that it could be useful for other people going through similar experiences to read about what it’s like. It’s not that bad, honestly. I would love to offer words of comfort to someone going through what I did.

I’m saving most of what I have to say about the experience for the book. I feel like it belongs in a bigger story, with the chapters of context around it. My maternal grandmother died of a brain tumor, though neither of ours are hereditary (we’re just lucky like that). I thought about telling her story and telling mine alongside it. I want to do this out of a respect and admiration for my mother, who clung close to both of us as we went through our tumor experiences. I can’t imagine the suffering my mother went through when I was going through my tumor experience. I owe her everything already, but now I owe her everything again on top of that. I never saw her waver, or doubt that I would get better, though I know she felt those things.

I’m going to write about my tumor experience.

What you won’t see me do is call it a battle. If I have one annoying habit that comes out of my experience, it’s zero tolerance for battle imagery when you talk about illnesses. You don’t battle an illness. A battle implies a win scenario, but there’s no winning against cancer or lupus or anything else. We get sick and we get better, or we live with it, or it kills us. Strong people die of cancer every day. You can say it, but forgive me if I roll my eyes.

I just don’t think I’m going to write about it right now.

It’s on my mind again because things are going great right now in my life, and just today I got headaches that remind me a lot of my hydrocephalic headaches. When I was getting diagnosed, I thought it was my sinuses. That’s what it felt like, and that’s what these feel like. Funnily enough, my allergies are wreaking havoc on my mucous membranes, so it’s likely just that.

But these headaches make me scared, because of their familiarity. I know these headaches. The last time I had them, it turns out I had cancer. But my sinuses are also really bad right now, so it is probably just that. My tumor is unlikely to grow back.

But maybe it did.

I was going to leave it there, but that’s not fair. I am not scared that I might have cancer again, I don’t even know if I’m scared of dying from it, but I am reluctant to spend too much time on it in this space because it’s a bummer. It bums people out to think of me as a cancer patient. I don’t have cancer anymore. The neurosurgeon fixed me up, and the radiation oncologist finished the job. The overwhelming likelihood is that I just have allergic rhinitis and my yearly scan on June 30th will be as clear as all of my post-surgery scans have been.

But, perhaps unfairly, I have relied on this outlet as a way to talk about things, to examine things, to clear out some of the cobwebs.

I had cancer, I don’t anymore, and I’m highly unlikely to get it again. I’m unfathomably lucky.

If reading a book about my experience appeals to you, or you could imagine it appealing to someone, please let me know. I value your opinions.

101 thoughts on “What it’s like to have a brain tumor

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