Sunday, August 3, 2014

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:

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

24 comments:

  1. When I saw you were being honored by the Center for Women, I immediately thought of how brave you have been--far beyond what they mentioned in the newspaper. I thought of your tumor, surgery, recovery, ordeals with language and driving. And yet, I had no idea what you are still facing. I attributed your blog silence to summer break. Wishing you a most successful surgery and recovery. You are one of the most courageous people I know; it's time to focus all that courage on yourself. ATS

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    1. Thank you...I do hope that the blog silence has been broken, and that this can be a place where I share what I'm experiencing.

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  2. Alison: Thanks for writing this, and for letting us know what you're going through. You're right that anyone over 35 has experienced that tip-of-the-tongue phenomenon (what IS that word?), but, yes, this seems different than that, too. And, given your profession (our profession), losing facility with language is especially alarming. If I understand you correctly, after the last surgery, there were initial lapses, but fewer as time went on? I ask because (if that is true) then is it reasonable to expect a similar recovery after the next surgery?

    Please forgive me if these questions are foolish, unreasonable, unanswerable, or just afflicted with well-intentioned (but useless) optimism. I'm trying to see the glass as half full (or at least too large), and that may not be helpful.

    I like what Anonymous (Aug. 3 2014 9:16 AM) said, above. You ARE courageous. Your fight against the deeply corrupt South Carolina legislature and equally nasty Board of Trustees has been truly inspiring. As I've fought the corrupt Kansas political machinery, I've often thought of -- and drawn strength from -- your work. So, as Anonymous says, perhaps you can focus some of that courage on yourself.

    For what it's worth, your friends are all thinking of you, and hoping for the best possible results from this next round of surgery. Take care of yourself.

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    1. Thank you, Phil. I've been really grateful for the connections we've had recently, even though those connections have been triggered by our horrific states.

      Your questions aren't troubling! I'm not sure what will happen with language, but I do expect (without any evidence) that I'm going to experience some real recovery because I'm going to work my ass off. (The tumor shouldn't affect my ass at all.)

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    2. Hi, Alison. I've been grateful, too -- despite the assholes who have been attacking our respective educational systems. (I think, here, I am missing an opportunity for a joke lamenting that working one's ass off doesn't always defeat the assholes. Ah, well.)

      I'm sure you will pursue the rehab with determination and good will. And I'm sure that your efforts will help you recover! So,... as Bill Engel used to tell us, "Keep on fighting!"

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  3. Dear Alison -- no matter what, the very little bit that I know of your extraordinary language is powerful enough, deep enough and beautiful enough to sustain whatever incremental decrease you may or may not have with this surgery. I am grateful to know you in this small way -- and send heartfelt waves of healing thoughts that all will be well.

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  4. That's scary stuff. On the plus side, your vocabulary is so wide that you'll still have a better one than most people. I've noticed that studying foreign languages kind of "awakens" the synapses in that area, so perhaps you could review your French before the surgery. It might not work, but it would give you something to do.

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    1. I've considered things like utilizing different kinds of language--singing, for instance, seems to come from another part of the brain. I'm curious about different sensations--does emotion come from a different place than logic? I like that learning a foreign language is another possibility!

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  5. Thank you for the update. You know the Dinwiddies love you.

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  6. I wish the very best outcome for you dear Alison Piepmeier! And if you have to start writing in French, I swear I will take a French class just to learn how to read and write French so I can continue to follow you on your amazing journey, n'est pas? Keep posting and stay outraged~the world is a better place for your outrage! I miss you, cool lady, love Maggie

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  7. Is it weird that I'm finding it hard to express how this blog post makes me feel?! In all seriousness, I wish you a successful surgery, a speedy recovery, and a long and articulate life!

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  8. Oh, Alison - I wish I could help you in some fashion, or at least allay your fears but as critical as the words are mine sometimes fall short. I love you and I trust your doctors & your heart will leave all the words intact.

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    1. Just a side note: your words rarely fall short. I quote you all the time in my book.

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  9. You're a hero to me. Having been through a major surgery 18 years ago, I know that the shadow of fear is always there. Not necessarily the fear itself but a shadow I catch out of the corner of my mind sometimes. I have every faith you will ninja through this!

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  10. Most importantly: Oh how I hope you don't have to choose. And oh, how I am so sorry you are dealing with this, and worrying about death and all of that other terrible stuff.

    I don't have a brain tumor, but I have a heart defect, and I know what you mean about how other people forget about your tumor, but you don't. I think about my heart defect every single day. And in a weird way, even though it's my heart, I experience forgetfulness too-- I thought at first I was losing my mind. I can't remember simple things. I have lost my keys and my wallet dozens of times in the last year. Words that I know that I know suddenly leave me, and I get SO FRUSTRATED when someone tries to finish my sentences. It turns out, memory problems are a side effect of one of the meds I need to keep me alive. And so I deal with it. But I hate it.

    I will be thinking of you and hoping for the best outcome of your surgery. I hope that even this tiny measure of support and strength help somehow.

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    1. As odd as this is to say, I find it comforting that you've experienced this word stuff--I may well contact you for a connection on this.

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    2. Makes sense to me-- it's always good to find people who know at least a little something of what you're dealing with. My email is erniebufflo at gmail if you wanna get ahold of me.

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  11. Good luck with the surgery and recovery! Make Trey or Nonnie post updates for us so we know you're ok!

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  12. Perhaps the passionate, fiery woman you are comes in part from the challenges that you face AND embrace. You inspire so many (like me) with these qualities and your ambition to fight against the odds. You'll be in my thoughts in the coming weeks. I hope that all goes well in surgery and that your recovery is quick and comfortable.

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    1. Thank you, Sylvie--powerful activist who, sadly, isn't a WGS major.

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  13. Will do, Erica! (This is Nonni!)

    I'm so very touched by all these thoughts of love and appreciation for my darling daughter, and wishes for her recovery from this challenge. I know your love and appreciation mean the world to her.

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  14. Alison, thank you for sharing this, and please know that you are at the forefront of my thoughts these days. With respect to your language, in the brief time that I've known you, you've always impressed me as someone whose message not only precede you, but radiates from you. I have no doubt that whatever small impact this will have on your language, that effect is NO match for the force of your passion and conviction. Wishing you a loud, verbose, and passionate recovery! -Danielle

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