What's the story, morning glory?

Phrenology: not what we currently consider
an accurate representation of the brain.

I haven't been blogging for a while.  Now I'm ready to tell you the story.

Just so you're prepared, the story ends:  in two weeks I'm having brain surgery.

Or maybe that's how the story should begin.

In two weeks I'm having brain surgery.  Four and a half years ago, on Christmas eve, I had a huge seizure, and in the hospital that night, my brain tumor was discovered.  Six weeks later, a wonderful neurosurgeon at Duke did surgery and removed a solid chunk of material from the middle of the part of my brain that controls language.  The surgery was a great success.  It stopped the remaining parts of the tumor from growing.  And when the tumor did start to grow a bit two years later, I went on a pretty easygoing chemotherapy, and that stopped it again.

There have been effects, of course.  Until my Star-Wars-loving neurologist got me on the right medicines, I had seizures, and I wasn't allowed to drive for years.  The surgery had small effects on my language and my memory.  I've probably already told you the story that characterizes my word-finding challenges, but here it is:

Within a couple of months of the surgery, I was in the car with Walter, talking about something, and I discovered a spot where a word was supposed to be, but it wasn't there.   

"Dammit!" I said.  "It's a word.  It means big, exaggerated, over the top!"   

Walter nodded.   

"I can't think of it!"   

He then said, "It starts with 'hy.'" 

"Hyperbole!" I announced, both relieved and a bit disappointed. I'd thought of the word.  But I'd needed clues.

When I told people this story immediately after it happened, almost everyone tried to encourage me by telling me that they didn't know that word to begin with!  Hell, nobody knows the word hyperbole!

But I knew it.  And the fact that it had disappeared was an effect of the surgery.  It's not a big thing--I'm  able to teach easily, to write, to maintain conversations.  I've published academic articles and a ton of columns for The City Paper. But I often have to start stories by saying, "I've probably already told you this, but..."  I often have to change my sentence halfway through when I realize that I'm approaching a word that isn't going to come to me.  I have to write things down the moment I think of them or they'll disappear.  I forget names, even names I know.

I get that everyone 35 and up reading this will tell me that they're experiencing this very thing.  And I hear this--and see it--from enough of my middle-aged friends that I acknowledge that it's true.  It's easy for me to blame everything on the tumor, and that form of paranoia isn't helpful.

And yet let me clarify this point:  other people have forgotten about my brain tumor.  Of course they have--its effects are minimal, and they aren't apparent to other people.  But since December 25, 2009, I've thought about the tumor many times a day.  I blame things on it i part because I never forget about it.  Sometimes I'm aware of it simply as part of my body, while other times I fear that it'll grow and that I'll die.

Now it's growing.  I've made my uncle, who's a neurosurgeon, assure me more than once that this growth doesn't mean I'm going to die soon.  What it means is that I'm going to have surgery.  My Duke neurosurgeon is going to explore the remaining tumor, tumor that has infiltrated my brain tissue.  When he takes out tumor, he'll also be taking out part of my brain.  And as I mentioned, the tumor is in the language center of my brain.

 I asked my uncle how I decide:  if I allow the neurosurgeon to take out more of the tumor, I'll live longer, and I'll lose language ability--ability that in many ways defines who I am.  How do I choose?  My uncle said, "You don't choose.  You'll get both--language and being alive."  I heard what he said.  I wrote it down.

And this is still prowling around inside me, a question of my priorities.  My #1 priority, which I can recognize with no ambivalence, is being alive for Maybelle.  But language--talking, writing, thinking, being outraged, being passionate, being curious, being able to connect with the people I love--is a significant second priority.  So important that it's a millimeter below priority #1.

I hope that I don't have to choose.  I hope that the surgery will help me to have years and years and years of life.  And I hope that within weeks or months of the surgery, possibly with speech therapy and coaching, I'm back to being a person in love with language and able to use it.  If it's a few notches lower, I can accept that.

But how many notches?  What will that be like?  How can I choose?


*If you're interested in other posts about brain-tumor-land, here they are:

• Guest room
• "You are AWESOME!" "No, YOU'RE more awesome!"
• Gratitude.  And pain.
• Two penguins walk into a bar

Of course you can always click on the top of the blog to get the newest info/thoughts/etc.