Month: November 2020

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.  

I only mentioned cancer once this time

I am writing this from my latest Instagram impulse purchase: a surprisingly inexpensive (at least it was when I ordered it—I see they’ve substantially raised the price since then) and extremely responsive e-ink tablet with a pen. I can write long hand, with decent character and handwriting recognition, for a fraction of what an iPad costs, and this thing is also thinner and lighter than a notebook of similar size. I’m pretty amazed, I don’t mind admitting, though it definitely qualifies as a silly impulse buy. I don’t need this thing. I have more paper notebooks than I could ever hope to fill. I even have one of those iPads, and it does more stuff. I can’t watch movies on this tablet. 

Even so, I am a believer in e-ink. When it got good enough to replicate paper on a functional level (and in a way that made reading still feel like reading), I shifted most of my reading to a Kindle. There is something to be said for electronics that feel like analog. Maybe that’s only true for people like me, digital adoptees, not digital natives. Would a kid who only ever had iPads get the same kind of enjoyment from these almost-devices? I don’t think so. 

What’s Old is Old

There’s a tendency for implementations of new technology to mimic what already exists until someone who doesn’t know any better comes along and breaks all the rules they’re supposed to follow because they don’t know about those rules, and everything changes. That’s why the earliest movies resembled stage plays so much. 

But those things never really completely go away. We still have plays. Almost exactly three years ago, I was in London watching a production of Much Ado About Nothing (the link does not go to the version I saw, but it was at that location and with some of the same actors) at the Globe that would solidify it as my favorite Shakespeare play and, in Beatrice, see something of the kind of woman I’m drawn to most. Aye, there’s the rub. If you know the play, the relationship between Beatrice and her beau is a bit, uh, contentious at first. That’s the fun of it. 

Here’s an empty stage:

I promised someone I would stop writing about relationships, so I won’t break that oath here. Whenever I do, on other platforms like Twitter or what-have-you, this person swoops in to smack me, nicely, but not too nicely. I always take their advice, except when I want to cause trouble on purpose. 

Where Ya Been

It’s been a while since I wrote one of these, but I can’t say that I’ve done much of anything to justify it. I’ve been in what my ex wife (and now dear friend) calls a “bulking phase” — rather than write much, I read. I know others have said they have trouble reading books in Times Such as These, but I have not had the same experience. In fact, I’m more voraciously reading than ever. Those same people often report that they watch tv shows and movies instead. Weirdly, I’ve found it almost impossible to watch anything except documentaries about English history, for reasons I can’t explain. There’s something exotic and yet familiar about them that I can’t get enough of. 

I’ve been reading books, and watching documentaries, and working, and petting my cat, and talking to my cat, occasionally streaming on Twitch with my cat, talking to my family, a few friends (but not enough) and very little else. I’m not depressed. I bathe as often as I did before and still brush my teeth twice a day and wear deodorant, even though Emmitt doesn’t care. I order food from Target and pull up in a parking place and someone very kindly comes out of the store with everything I ordered and puts it in my trunk. The only time I ever have to go into a store is to pick up my medications from the Giant Eagle, which also allows me the chance to buy some of the few fresh produce items that Target doesn’t really carry. 

That’s all I do. I might occasionally play a video game, listen to a podcast, or take a walk. I certainly don’t write anything that isn’t a work assignment. 

Do I Have a Fever or am I Just Cold?

I play that game with myself almost every day, and I have yet to have a fever. I lost weight (and then found some of it) at the beginning of the pandemic, so temperatures that would never register before are suddenly making me put on my housecoat. 

This video popped up in my head as I was writing something for work (it is related, but only tangentially) and it is both still funny and also cringingly dated. To paraphrase Paul F. Tompkins, there was a period there in the 1990s where “he’s gay” was an adequate punchline. You didn’t need to do anything except imply someone was gay in order for a joke to land. We are thankfully beyond that, or at least I am, and any comedy I enjoy is. 

Anyway, this sketch has that quality to it, unfortunately, and is also inexplicably racist in its depiction of someone speaking an African language. Adding random pops or clicks to your fake African dialect was, alas, also enough for a punchline. 

 

 

Oh, That, Too

I also celebrated something I’ve come to think of as an additional birthday, celebrated only by me and Emmitt (who gets more treats): the anniversary of the brain surgeries that saved my life. I have noted in other places (social media, mostly) about how difficult it is for me to write about my experience, despite putting “writer” next to my name a lot and mentioning the whole cancer thing whenever I can plausibly work it into a conversation. I can talk about it, but writing about it requires a deep dive into my memories and they’re still too fresh. I suddenly find that I’m experiencing the terror and pain again and I’d really rather not. I’ll take my occasional dizzy spells, bad memory, daily little headaches and an optimistic neurosurgeon any day. 

Baron Samedi

There’s a pivot for you, but I’m allowing myself to write about one of the memories I have of my experience that is more interesting than “oh yeah, that hurt a lot and I thought I was going to die slowly and in pain.” On the night after my first surgery, I hallucinated that Baron Samedi was dancing around the edges of the shadows of the doors and windows.

For the record, this is the person I saw: 

Here’s a relevant passage from his Wikipedia page: 

He is noted for disruption, obscenity, debauchery, and having a particular fondness for tobacco and rum. Additionally, he is the loa of resurrection, and in the latter capacity he is often called upon for healing by those near or approaching death, as it is only the Baron that can accept an individual into the realm of the dead.

This was not exactly on the forefront of my mind, and it was not an otherworldly experience. I can’t explain the appearance of Baron Samedi, a character out of my memory, whose appearance also happened to be extremely appropriate to the circumstances. Is it spooky? Yes, it is, in the telling of it, but not in the moment. 

When I say I hallucinated a dancing vodou god, associated with death and resurrection, what I mean to say is that it was an extremely peaceful, almost joyful thing to see. I had survived a surgery I was convinced was going to kill me and I knew that I was hopped up on a lot of powerful painkillers and steroids and it was in the middle of the night and hospital was very quiet, and I couldn’t move my head, and I was a captive audience to the cartoony dancing. I was alive. I had made it through the first half of the journey, through the first surgery, and it was just me and the Baron. I was not scared, because I knew it was a figment of my imagination. It was fun? Yes. Maybe a little.

That’s Enough

I’ve had enough writing, and I’m boring myself, which is a terrible sign. I will leave you with two things:

One of the things I’m doing is my podcast, which is delightful and fun and I get to talk to two of my favorite people. I forgot to include that in the things I’m doing. I’m putting up the newest episode tomorrow, so subscribe etc.