Friday, August 22, 2014

One week anniversary

I suspect at this moment seven days ago, I was lying in my bed in the ICU with bandages and needles all over me, with the medical team trying once again to figure out how to keep me from throwing up.  Or maybe they'd finally gotten it right and I was asleep.

For all morning and quite a bit of the afternoon one week ago, I had brain surgery.  Successful surgery.  Exactly one week ago.

Family and friends sat in the waiting room.  Waiting, waiting for hours.  A really kind friend who lives in North Carolina did exactly the same calm, thoughtful generous thing that she did four and a half years ago, when I was having this surgery:  she brought a delicious lunch for everyone who was trying to distract themselves.

Meanwhile, I was talking--unable to feel much pain but conscious and able to read word cards, identify basic images, even talk about Maybelle.

All you readers know this.  It's not new.  But I find I want to get it out of my body a little bit, to sit back and be able to see it from a few inches away.

I've just taken a four-hour nap, which means for a little while I can communicate by writing--using words without the kinds of gestures and body language that help my mom to be able to nod and understand exactly what I'm trying to say.  My language is and will be really fucked up here, as I was warned by every medical professional I encountered.  Fortunately, the language tangles are temporary--just part of the process here.  But for now, if I want to be in touch with people via any words, I have to have rested really well immediately ahead of that effort.

And now that I've rested and given you a bit of my post-surgery reflections, here's what happened this morning.
Mama and I went to Wildflour this morning to get the mini cinnamon rolls mom ordered for Maybelle's birthday party at school.  Today isn't her actual birthday--that's Sunday--but the timing worked out so that this was her celebratory day at ECDC.

As we took this picture of ourselves, I realized that it's been more than a week since I've had a moment like this:  sitting in a pastry/coffee shop, having a cinnamon roll ourselves as we waited for it to be time to head back to school.  It felt like a new kind of real life, like, "OH, right--this is the sort of thing my life can look like!"

On the one hand, I've barely been out of commission at all.  After only seven days, I'm able to go out to help with my daughter's birthday gathering.  And at the same time, it feels like a world away.

It didn't take me long to recognize a crucial component of my morning birthday celebration:  I had a second cup of coffee at 9am, and that meant I was able to stay awake--barely--during Maybelle's celebration.  It was another kind of realization:  this is an easy thing that adults do all the time, have a second cup of coffee.  And yet it feels both familiar and bizarre at this moment.

The birthday celebration was wonderful.  The class sang a series of songs to Maybelle, and she got to march and dance and circulate the room.  I'd written her a little book this morning about her birthday, and she read it to her classmates (very nicely, I must say).  She seemed to have just about the best morning imaginable.

Then I went home and slept.  I'll get to spend the rest of the evening being an exhausted, but happy, mother and daughter.

- - - -
Previous posts about tumors, choices, etc:

Monday, August 18, 2014

Go home, said the man the moon, go home.

This is me looking good.  If you want to see the nasty
stuff, scroll down to the bottom of the post.
Look at me!  As 97% of people on the planet (most of whom are on Facebook) know this, but to be sure that this fact is widely known:  I'm home!

Hundreds of you have been supporting, loving, and sending all kinds of good stuff my way...this has really meant a lot to me.

But even as I sit in the luscious sofa in my super-comfortable home, one of the things I've learned is that I'm having incredibly bad language skills. I'm not speaking or writing particularly well (although my mom actually said I'm speaking better than writing. Evidently the thoughts aren't translating to the written word as well as I think when I'm writing them.) Therefore my mom is taking down this blog post from my dictation.  It's a new kind of blogging for me.

The vague messiness about my communication is another weird moment in my life, which, I guess, is always to be expected when you have brain surgery. Dr. Friedman removed a quarter of my skull and dived into my brain. This time I was quite awake for the surgery, so when it was time for me to read cards or talk about Maybelle to the speech guy, I could. And I can still remember the basic words I was supposed to be able to demonstrate (like seeing a picture of a duck and saying, "Duck").  I'd also coached speech guy to bring Maybelle into the conversation since she'd be a very motivating factor to make me want to stay there awake.  Dr. Friedman did some surgery, then he brought out the in-room MRI to see what other bits of tumor were still there, then he dived back into my brain for another round.

Later Dr. Friedman came my ICU and said he'd gotten more than he expected: almost all of it out.

The 6+ plus hours of my surgery were great, and then they were followed by to a lovely experimental process.  Nurses and PA's were doing anything they could to get me to stop my extensive vomiting.  They worked on this effort for 3-4 hours, shoving multiple things into my IV, but only when they gave the third medicine more than once was I able to curl up in the ICU and rest.  As it turns out, though, I was doing so well they released me to the hotel straight from the ICU on Saturday, the day after surgery. And then said if I were doing as well the next morning I could go home to Charleston - which we did!

Yow--that's ugly!  But all kinds of
stuff healing.
The funky-ness of my language hasn't yet become distressing, but that's because they told me that it was to be expected, and it will go away - fairly soon.  For right now it's good for me not to be solo in a conversation...for instance my mom has said to me, "Honey, you've used the word 'intimate' three different times, and it doesn't apply to any of those situations." It's good I got the semester off from teaching, because the students would have thought it was hilarious.

We got to Charleston Sunday afternoon -- WAY before we thought we would. In general I'm feeling pretty good. Maybelle is thrilled that I'm home, but let's face it - she's far happier about seeing her Nonni.

Thursday, August 14, 2014

Two penguins walk into a bar

This isn't truly a grouchy face.  I was falsely
grouchily showing off the plastic knobs on my head.
My brain tumor surgery is tomorrow morning.  Starts about eight hours from now.

So for that reason, I'm offering a slightly more upbeat post.  I'm not going to be falsely cheerful, but I'll share a few things that aren't entirely focused on fear/danger/pain.  Instead, I'll tell you other aspects of this process.

For instance:  last night my mom and I arrived at our very nice hotel to get ready for today's 8:30am pre-op process at the Duke hospital.  I went out to the car to get my suitcase, which not only has my clothes, toothbrush, and books, but also my medicine.  The seizure medicine.  Which I have to take every morning and night.  The suitcase is fairly important.  So here's evidence of how freaked out I am:  the car was empty.  No suitcase.  I carefully packed it, then left it at home.  Because mom and I were able to get replacement seizure drugs at CVS, the situation was funnier than it was distressing.

And here's another example:  After I wrote about gratitude and pain the other day, I've gotten probably 20 emails from students telling me how important I've been to their lives--in ways I wasn't aware of.  Plus, as I'm sure you've noticed, there have been some powerful comments on the blog (Robin Bowers, I'm talking about you) and on Facebook (SO many of you have written things that have moved me).  Wisdom.  I'm trying to breathe it in.

Freaking delicious.
And another:  after I went through a series of exciting pre-op activities (urine test, blood test, EKG which required a guy to put all kind of pasty stickers on my naked boobs), mom and I were told by multiple staff people--including the admissions person--NOT to be admitted until we'd had some good food to eat.  "Once you have your bracelet on you can't leave," they sort of whispered, "So go now!"  We went to Nosh and I had a fantastic brunch:  French toast with peanut butter and bananas.  The best food I'll have (and have the appetite for) in days.

And finally, I'd like to celebrate friend-from-afar, Kris.  She became part of my life five years ago, when I was diagnosed with a brain tumor, because she'd had one recently, and a women's studies friend had connected us.  The brilliant thing she did was text me with jokes every day leading up to the surgery. She's doing it again!  It's fantastic.  I'm eager to read every text she sends.

So I'm going to offer two.  #1 is my favorite.  #2 is most appropriate to this evening.  You can read either or both--your choice.

#1:  Two penguins walk into a bar.  The third penguin says, "Huh--you'd have thought the second one would have seen it."

#2:  A brain walked into a bar.  "I'll have a pint," she says.  "No way!" says the bartender.  "You're out of your head!"

- - - -
Previous posts to give you background:

Tuesday, August 12, 2014

Gratitude. And pain.

I’m in a moment where I’m surrounded by generosity, from people locally and afar.  Surrounded.


Do you want to make Maybelle happy with food?  Bring
Wildflour cinnamon rolls, her favorite food of all.
Is it worth listing some of what they’re doing?  One friend has taken charge of the offers of food.  Wonderful local friends, and people I barely know, want to bring food to help me recover.  They want to create something in their own kitchens, the kinds of luscious meals they wouldn’t usually fix for their own families or themselves.  Andrea established a calendar that will schedule just as many meals as I need, meals that will arrive not only in my immediate days of recovery but in the six weeks of my radiation, too.

Leigh and Claire are making it possible for me to go through the process of being promoted to full professor, which is happening this fall—while I’m recovering from brain surgery.  I’m creating all the main components (my narrative, copies of the things I’ve written, student papers with my comments), and they’ll organize this stuff and put it all online.  It’s a chunk.  Hours of work.  And they’re doing it.

Administrators here are glowing examples of exactly what you’d want:  supportive and happy to make this work in whatever way they can.  I will be on medical leave all semester.  They’ve made that clear.

And Leigh created a site on for Maybelle’s Fun Fund.  People from anywhere and everywhere can donate money to help support babysitting.  I’m single and will need help.  My mother and best friends are taking turns being live-in support, but they can’t do it forever.  So I’ll have the funds to invite babysitters—people Maybelle adores—to come help.  This site is growing and growing.  As I’ve told Leigh multiple times, this is amazing.  Amazing!

I’m getting emails from students, former students, colleagues, friends who are offering their love and prayers and good vibes.  They’re asking what they can do—they’re recognizing possibilities and are responding.  They want to be with me. I’ve gotten emails from colleagues across the country who are sharing how much they’re thinking of me, the work they want to do with me when I’ve recovered. I’m hearing from students I worked with very, very closely a year ago or a decade ago—students who've such a great part of my life.  I talked with an alum yesterday, a student with whom I worked very closely while she was with me.  She wanted to hear my voice, to hear me saying how shitty things are.

And I said it. Things are shitty.  Everything is triggering pain.

Is that fair?  So many people reaching out.  So many people sending love.  And I have fucked up feelings.  I guess the more appropriate way to say that is that I’m experiencing complex feelings.  But they’re fucked up.

I feel guilty:  I don’t deserve this, this much generosity.  It’s more than I’ve ever experienced before.  Far more.  It’s coming from so many places, so many times.  People I’ve never met at Trey’s workplace are sending money.  People I’ve never met who are friends of my mom’s, or single moms who’ve heard about me, or friends of the many friends on Facebok.  I can’t possibly deserve this much.  What in the world could I do to be worthy of this?

And if I’m not guilty, if I do in fact deserve this generosity, then it can feel like evidence that I’m going to die soon, that the brain tumor will kill me.  The beautiful words that people post online and send me can feel like obituaries:  “Alison transformed my life.  I’m so grateful that I got to work with her.” “Let’s raise money for Maybelle, since Alison won’t be with her long.” “We’ll feed her while we can, because she’s on the decline.”

Let me be clear:  nobody is writing these things!  Nobody’s writing an obituary.  Almost every message ends with some version of, “You’re going to do great!” “Kick that tumor’s ass!” “I can’t wait to get together once you’re feeling better!” But sometimes the upcoming death is what I read, what I see and hear.

It’s painful. This moment is excruciatingly painful—not physically, but cognitively.  Emotionally.  It’s three days until my surgery, and I’m feeling vulnerable.  Afraid.  Sad.

The generosity is crucial—it’s holding me up.  And I’m still in so much pain.

Sunday, August 10, 2014

"You are AWESOME!" "No, YOU'RE more awesome!"

For the last six years Leigh and I have wanted to become actual friends--not just "let's have a cup of coffee during the workday" friends.  This year we've done it:  we've eaten dinner together at my house.  Her family has met up with me and Maybelle at a fountain at one of the county parks.  She and I have had at least two lunches in which we've discussed shitty, shitty stuff.

One important part of that is that when I share truly shitty stuff with someone, then they're moving into another layer of friendship.  I'm very good at pretending all is well and then going home feeling incredibly sad and nauseated.  So here's Leigh:  getting the sadness and nausea in person.*

People have been generous and wonderful when they learn about my brain tumor, surgery, radiation.  I've had people make me feel incredibly warm inside when they tell me they will do anything I need.  The problem is, as I often respond, is that I don't know what I need.  I tell folks that I'll let them know when I recognize a need.

But I've had a couple of people who've been especially helpful, because instead of offering help, they offer a specific thing.  Here's what Leigh offered:

Ridiculously cute matching outfits.  Maybelle loves
Chantelle.  Like, LOVES her.  Is happy to dismiss me
when Chantelle arrives.
It's a website she created to raise money for the babysitting I'm going to need for months and months.  For instance, in order to get things done for the trip, I'm spending $190, plus another $200 for the student who's spending a night and two days with Maybelle.  Babysitting isn't cheap, and because I have the best babysitters ever, I want to be sure they're paid.

Although my mom, Catherine, and Eliza are taking turns doing live-in time with me, but that won't last forever.  The radiation lasts for six weeks, and I suspect I'm going to need help. So one thought was that Chantelle and Anthony could spend the weekend if I'm feeling particularly exhausted. I can come in and out, but they'll be responsible for taking care of Maybelle.  Stuff like that.

I feel a little weird putting the word out about this...but here it is.  The word.  From the comments I'm getting on the blog and on Facebook, it's incredibly clear that many of you want to help.  And Leigh's created a way that you can.  Sending flowers can be a sweet, sweet gesture--but getting me some help to take care of Maybelle as a single parent with a significant medical issue?  That would be beautiful.

*I don't give a good enough representation of Leigh here.  The reason I feel comfortable being nauseated around her is because she's awesome.  Really.  And she wrote this book.

Thursday, August 7, 2014

Guest room

I am now six days away from heading to Duke.  My mom will be arriving at noon on August 13, and then she and I will hop in the car and head out of town.

Six days away.

On Monday I went to Duke and talked with my neurosurgeon and my oncologist.  Both were actually quite encouraging about priority #2, my language:  they said that I'll forget people's names, even if I've met them multiple times.  The radiation that'll happen after the surgery will mess with my short-term memory, and that won't go away.  But both said that this is about it.  My language won't drop to the level of a fifth grader.  I won't even have to do what Eliza was suggesting:  lose all German!  You don't need Shakespeare anymore, so have him cut it out.  What about childhood songs?  Let them go!

I was really relieved about that news.  I'll still be able to speak, to interact, even to write.  I may have to apologize and explain why I've forgotten what someone just said, but I'll figure out a strategy to make that work.  I can explain this disability (and if you have suggestions, have at it.  Share your thoughts).

Having priority #2 addressed didn't eradicate priority #1, though:  being alive for Maybelle.  Of course no one could explain that one completely.  It's a mystery.  

But I got some frightening answers.  My neurologist doesn't seem to have good interpersonal skills, because he gave me a time frame that wasn't worth celebrating.  After that I met with my oncologist and her nurse practitioner, and they were much more encouraging.  The nurse practitioner seemed to be an expert about coaching, telling me all the things about me that contradicted neurosurgeon thoughts.  My oncologist and her team are the ones dealing with all the post-surgery stuff, so they had hopeful thoughts.

Radiation.  New, more aggressive chemo.  An even more aggressive kind after that, if need be.  All kinds of options.  No need to panic yet.

As if I can simply turn off the panic.

There's so little I have control over, of course.  I'm going to have surgery and do what the surgeon says, and then what the oncologist says.  I have instructions, and I'll follow them.  I have no control over this tumor and what it does.

For that reason, I am going a thousand miles an hour in my house and at work:  cleaning and getting rid of things.  Taking huge piles of things to recycling bins.  Talking with all the people who are supporting me at work:  my dean, Human Resources, the new interim director of Women's and Gender Studies, the chair of the WGS Community Advisory Board.  Aligning all the bits and pieces of my portfolio for full professor, like talking with my editor.  Making plans for who'll take care of Maybelle while I'm gone (trust me, this process took days and days and required me calling and emailing dozens of people.  But thanks for a host of amazing friends and babysitters, Maybelle's plans are now set).

The gorgeous guest room.  Come and visit!  You have
a place to sleep!
I'm in control of these things.

I was really excited to have the realization that my guest room was a piece of shit--full of unpacked boxes, random things that didn't fit into storage, a stapler, clothing that needed to go to other families.  And since several people are moving in in coming months, I decided to make that guest room not only functional but beautiful.  A comfortable, cleared out space to stay, so that when you arrive at my house, you celebrate how comfortable it'll be.  And how attractive.

That's the sort of thing I'm doing right now.  I have control over all of this.  Very good distractions.  While I wait.

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.