Brain Surgery: 1 Year Later

Posted on
Sep 30, 2013

Things are different now.

I feel like I could make a note in the timeline of my life to reflect this. “Here is everything that happened before brain surgery. Here’s everything after.”

I have trouble with this; I’ve never been that good with change. I like things to stay as they are. I become very unpleasant to be around when changes happen that are beyond my control.

Hell, I get annoyed installing new versions of programs on my computer. I’d still have Windows 95 running on my laptop if it were up to me.

I’ve avoided talking about how things have changed since my surgery because I figured it wouldn’t make for good reading. But a recently conversation with a friend made me realize the merits of discussing my feelings on this issue. Having passed the anniversary of my surgery this summer, I’ve reasoned a follow-up is in order.

A lot has changed in a year.

When I wrote my post, announcing my impending surgery, I mentioned a friend of mine who, at the time, was battling brain cancer. What was most amazing was that he regarded he own diagnosis as … well, as not being that big a deal.

He never seemed upset or bitter over his own situation, but when he found out that I had to have surgery, he was genuinely angry on my behalf. He told me so to my face.

“I’m fucking pissed that you have to go through this,” he said. It remains one of the more touching things anyone has ever said to me.

In April of this year, he passed away. I think about him a lot. I think of the stupid and selfish way I behaved towards him when we were younger, of the apologies I owed him but never delivered. I think of all things that went unsaid. Like how I was sad that he had cancer. And that knowing he had gone through brain surgery made it less scary when I had to face it. And that I was going to miss him.

I wish I had said some of those things. Any of them, really.

In that blog post I wrote more than a year ago, I also mention my neurosurgeon, the talented and lovely Dr. Foltz. As a young man, he was on his way to Julliard (he was a concert pianist), when a friend of his died suddenly from brain cancer. He decided to change the focus of his life, and to dedicate himself to trying to cure the disease.

I learned that when my friend passed away from brain cancer, Dr. Foltz was sitting just outside his room.

But here’s the part that’s … well, it’s just stupid. Honestly, if it were part of a work of fiction, you’d need to take it out, because it’s too fucking ridiculous: on the eve of the year anniversary of my surgery, Dr. Foltz died from pancreatic cancer.

And so, a year later, these two lovely men who played such a pivotal role in my surgery are now gone. I’ve stopped trying to make sense of it, because I barely understand how I feel. I suppose if I were to try to put a name to my emotions, it would be guilt.

I guess, anyway, that it’s guilt. I don’t really know. I just know that there are days when I don’t like myself very much. And then I feel guilty about that, too, because when you get the “it’s not cancer” biopsy result, you forfeit the self-pity card.

There are other things that are bothering me, but they seem stupid in light of everything else. Mostly, they can be summed up simply: I feel different now.

In the weeks prior to my surgery, and in the immediate aftermath of it, I felt a sort of weird, wonderful joy at just being alive. This might have been perspective, which I briefly had. Or perhaps it was just the unexpected and positive side-effect of the many, many medications I had ingested (along with several gift baskets, more or less in their entirety).

For a while after my surgery, I floated in that bubble, and was pretty damn happy.

Actually, that’s kind of inaccurate. For the first couple weeks after my surgery, I was completely and utterly out of it. I must have slept close to 20 hours a day. The first day I really remember was a week after my surgery, and even that is pretty fragmented.

It was a few months before I started feeling even remotely like myself again. But during that time, I remember being content with things, and really happy at how everything had turned out.

It was a while before I realized that things were not the same as they were. I suppose it should have been obvious, but, again, I blame the meds for my fogginess. Or perhaps all the cupcakes.

One by one, changes became apparent to me.

There was the hole in my skull, which was particularly sensitive. Every time I shivered, it felt like the tremors went straight down into my brain. My headaches (which had indirectly led to the discovery of my tumor in the first place, but were likely unrelated) sadly remained,  but now I had added scar tissue into the mix.

The result was that I now felt a weird type of pulling in my head – like there was too little skin up there, and it was stretched too thinly.

There were other things, too. Some were purely aesthetic. Others were cognitive. It would be difficult for someone else to notice any of them. But to me, these changes were vivid and huge. I saw them every time I looked in the mirror, felt them every time I tried to come up with a clever retort, or tried to compose a blog post with the same ease that I used to.

I started mixing up names, something which I’d never done before. I forgot conversations, let a few things slip that, in my estimation at least, I wouldn’t have before my surgery. But more than all of this, I just felt … different.

I asked Dr. Foltz’s assistant about it during one of my follow-ups. Why was I taking so damn long to feel like myself again? Why was I so, so out of it?

“You had brain surgery,” she said delicately. “It’s kind of a big deal.”

I nodded. I just needed time. That was all. Things would go back to how they were. My reflection would look familiar again, and the thoughts would come more quickly, and I would feel like I used to. And so I gave myself a year – an arbitrary date when things would go back to normal.

It came and went. And while the headaches are better now, and I am less foggy than I was, things are still not exactly at they were. My hair over my incision site is growing back, yes, but it is strange and brittle now, crooked and frizzy from having pushed through the thick skin that surrounds the hole in my head.

Ain’t that just one hell of a metaphor?

I asked my friend Michelle about it one night over dinner. I told her everything I was feeling, every strange thing that was bugging me.

“I feel different,” I said. “And I look different.”

“You seem just the same to me,” she said gently.

“But I’m not.” I insisted. Like a five-year-old on the verge of a tantrum.

We sat at one end of her enormous dinner table. There was conversation and laughter at the other end, but I wasn’t a part of it. Not at that moment. And Michelle took herself out of it, too, so that I wouldn’t be alone. I don’t know if she quite realized what that meant to me, or how the words she said next have stayed with me.

They’ve become a sort of weird mantra. It’s not something that I want to be true, but it is, and coming from Michelle, they were that much easier.

“You might just have to accept that maybe things are different now,” she said. “That’s just how it is.”

I will not focus on the fact that while I wrote those last few paragraphs, I momentarily forgot my dear friend’s name. Instead, I will focus on how she gave me some of the best advice I’ve ever received.

The other bit of wisdom that has stayed with me has come from my friend Chad.

He runs the Brain Chancery blog, where he writes about his life with brain cancer. It is brilliant, and beautiful, and funny. It reminds me that my problems are silly and petty and stupid.

In an email conversation I had with Chad, I told him about the death of my friend and my doctor. I told him that I didn’t feel the same. And that I didn’t know what to do.

This is what he told me in reply:

Just let it out when you feel sad, and you’ll get through it.  If you need an ear for letting it out, I can be one.  Heck I can be two!  I have two ears!  You’ll feel better.  It just takes time, and cookies.  And time.  And letting it out.

There was more, and it was lovely and funny. But more than anything that he wrote, what got me was this:  that despite all the crap he has to deal with, despite having to juggle brain cancer and medical bills and seizures and Ativan, he took time to comfort me. This is how beautiful my life is, how wonderful the people in it: those with far bigger problems than my own still take my hand and walk me through mine.

I don’t have any photos of Chad, but here’s one of a miniature horse with pink hair, which I know Chad would appreciate.

(Shameless plug: if you want to help Chad with any of his financial burdens, because medical care is kind of crazy expensive, you can do so here.)

And so here I am, doing what he said: I am letting it out. I am telling all of you that I have been sad. That it has been hard. That brain surgery is fucking difficult even when your tumor isn’t cancerous, and I can’t even imagine what it’s like when it is. That it’s very difficult to see wonderful people get sick, and wonder why it happened to them and not you.

You know what? It feels better just to say that.

I should keep doing it.

God, I’m even lucky enough to have people who will listen when I whine about this stuff. Friends, and family, and a husband who tells me, again and again, that I’m just as clever and lovely as I always was. And I know he genuinely believes it, but here’s the important part: even if I had changed, he wouldn’t care.

He’d love me anyway. That, perhaps, is the one constant in my life.

So that’s it. That’s where I am, one year later. Things are just different now. And I’m trying to be okay with that.

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