Tag: brain tumor

This isn’t going to be gross, I promise.

On this, the eve of the third anniversary of my second brain surgery, I am going to tell you about my shunt. 

I have a peritoneal shunt installed inside my brain. Here’s what it looks like: 

It’s a straw inside my brain ventricle with a long tube that goes down into my peritoneum. If I have any extra cerebrospinal fluid (that tastes like bananas, weirdly enough), it is siphoned off by the shunt and goes down the tube and empties into my abdomen. The first surgery I had, a little over three years ago, was completed after a week of heavy steroids and visits by my friends and family. Here’s a photo of that:

My memories of those days before my first surgery are actually pretty nice. I can’t deny that I enjoy being the object of attention, and nothing much gets peoples attention like the big C, and it was nice to hear from so many people and to know they were thinking about me. My girlfriend at the time was great, and extremely attentive and calming, pretty much the perfect person to have by your side when you’re going through the ringer of brain cancer. I’m sorry things didn’t work out in the long run, but she was amazing when I needed her. Here’s a photo of us together. I’m not using one of her face because that feels like a violation, somehow. I dunno. Her name is Kate and she’s great. 

It’s also hard to be in a bad mood when you’re on massive amounts of steroids. I never would have thought that steroids were necessarily mood-elevators, but I think they were in my case. Also, the nurses were truly lovely, and if I could remember their names or what floor or what department I would thank them personally. 

HUMOROUS ANECDOTE: For an unknown amount of time (months, maybe), I told people I had a “perineal” shunt. Your perineum is not your peritoneum. You probably knew that. I didn’t. 

You can touch my shunt. It’s my party trick, if there isn’t a Rubix cube around for me to solve. There’s not much of a trick to it, except some people get a kick out of pressing the squishy device just under my scalp. That it’s connected to a straw deep inside my brain makes it even cooler.

The shunt itself is bolted into place in my skull, and probably will remain there for the rest of my life. I asked my neurosurgeon about whether I’ll ever get it removed, and he said it was unlikely. Unless there’s a problem with it, they leave them in, even if you never need it again. Hopefully, I’ll never need it again. 

AN ADDITIONAL HUMOROUS ANECDOTE: There is no drug on earth better than the absence of pain that was previously unrelenting. I had spent months with intense headaches, and the first surgery I had eliminated them. The implantation of the shunt ended the squeeze of my overflowing ventricles. I was also taking pills for the pain of the surgery, so I was, for all intents and purposes, high as a kite. I had to stop at a Burger King to pee, and I stopped to look at myself in the mirror. What I saw made me laugh so much I took a photo. I have no explanation except that I thought a man with an obvious head wound wandering around in a Burger King, laughing, was hilarious and absurd.

 

Both surgeries I had were free of complications. Double vision plagues many brain surgery recipients. Not me. I had an easy tumor to remove, right on my brain stem. Yes, it was cancerous. Yes, it was malignant. It didn’t spread. I was lucky. It happened to be in a place that was easy to access. Not everybody is so lucky. The next time you’re tempted to say “at least it was benign,” remember that. Benign tumors in the wrong place are just as deadly as the other kind. There is no good cancer to get. It’s all bad. 

My memory isn’t great. I forget things sometimes, so I use my notebook more than ever. I have little headaches every day, but Advil takes care of them pretty handily. I get bouts of tinnitus more frequently than before, but it doesn’t last. I am extraordinarily lucky. 

There isn’t much slack in my shunt tube. When I stretch a certain way, I can feel the tube tighten against my skin. It’s visible when I turn my neck. Sometimes it itches and there’s nothing I can do about it except think about something else. 

That’s what cancer is, and that’s how you deal with it. You go from one day to the next, one scan to the next, until your story is over. 

I’m so very grateful that mine isn’t yet.  

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.