Thursday, June 16, 2016

Today, at Duke


I'm dying.  That's confirmed.  That's the bottom line for today's post.

Here's the longer version of this story.

I was at Duke University Medical Center today.  I've been getting brain tumor treatment at Duke for going on seven years.

These people at Duke are amazing, warm, caring, and very good at their jobs.  I love them all.

I went to Duke today to have an MRI and to talk with the team about what the MRI results mean for me.  I've assumed for the past few weeks that the news would not be good.

What's happened, so very dramatically, in the past few weeks?
  • My speech is getting worse.  I say the wrong words pretty frequently.
  • I have a hard time reading or typing anything on a computer screen.  Thank god for voice recognition software.
  • Using my right hand has become increasingly difficult.
  • My sense of balance is really bad.  I fall down very easily at some times during the day, and those times are difficult to predict.

These changes have been such a surprise.  I've never before experienced changes this quickly, as a result of the tumor.  My body is so very different than it was just a month ago.

As I've written before, I have already been told that I likely only have months to live.

After a day of driving, MRI scanning, waiting, and talking, here's what I learned that's new:
  • My brain tumor is much bigger. The tumor is now in places it's never been before.  And, not surprisingly, my brain is swelling from all the tumor growth.  
  • All of my symptoms are fully explained by the changes in the tumor.  

Over the past seven years, I have had two brain surgeries, a once-in-a-lifetime radiation treatment, every chemotherapy drug worth trying, and tumor-treating electrical fields.  I'm not a candidate for any clinical trials.

There are no treatment options left.  There's no reason to stay with the treatments I am now on, as they haven't been effective.

So, what comes next?

In a matter of months, I am going to die.  In three months to a year, I will be gone.

These words are hard to write, because I want to live.  I am sad -- sick to my stomach -- about my imminent death.  I've cried today.  I will cry tomorrow.  I can't imagine a day without tears any time soon.

I want to live for my daughter, my family, my husband, my friends.  I want to teach, to write, to try new things.

Most of all, I want to see my daughter grow up.

We can't know how long I will live, exactly, or how long I will be able to walk, talk, and write.

I will have more time to think this through over the coming weeks.  This is what I know:

I will have no more appointments at Duke.  These amazing, kind people can't do anything more for me.

I will spend my remaining time with the people I love.

It is about time for Maybelle to learn how to ride a real bicycle.  I'd like to see that happen this summer.

From now on, I am eating anything I damned well please.

I am extremely pleased that I am no longer going to have to wear electrodes, shave my head, and wear a backpack full of medical gear.  The Optune people are pleasant, but I am totally over having four electrical wires trailing behind me all the time.

I am so grateful for the people who have loved me, cared for me, fed me, send me messages of hope and support.


P.S. Brian helped me with this post.  Because I can no longer write anything this long without editorial assistance.  Which is really irritating, on top of everything else.

Sunday, June 12, 2016

It's Our Weekend: Alison and Brian, Together

Hey, folks.  This is a co-authored blog post by Alison and Brian.  We are spending most of our weekend together in North Carolina.  Call it our honeymoon, if you’d like. 


From Alison:

You may have read my recent Charleston City Paper article.  Life is challenging. I feel hopeful, even now.  But I’ve also cried a lot.  A lot.

Spending the weekend with Brian, though, has been perfect.  It’s been exactly what I needed. 

So, Brian and I are in Flat Rock, North Carolina.  I’ve loved it.   


From Brian:

Alison and I have been at a slightly funky mountain resort near Asheville.  This place is quiet and beautiful, with rustic charm to spare. 

So, what’s here?

Walking paths?  Yup. 

An impressive waterfall?  Check. 

A lake, with boats and canoes for the guests?  Absolutely.

An albino peacock wandering the grounds?  Strangely, that’s also a “yes,” along with the goat farm and the organic garden.  Note: The organic garden isn’t really my thing.

The resort also has an outstanding restaurant.  Yum. 

Dating back to the nineteenth century, Charleston folks with names like Memminger, Aiken, and Rhett have been building homes and buying land here.  So, there is more than a little South Carolina flavor to this charming North Carolina town. 

Only my mother will care, but I will also acknowledge that my Reavis ancestors once lived in this part of North Carolina, before the Revolutionary War.  That’s your shout-out, Mom. 

It’s been wonderful getting away with Alison. Wonderful 


From Alison:

All right, people, it’s my turn. 

Walking is getting challenging, presumably because the brain tumor is changing.  My right leg doesn’t always do what I want it to.  The right arm also can be harder to control these days.

My body has changed quickly, in ways that can make a vacation harder to take.  While I still live a full and happy life with Brian and Maybelle, I am not exactly sure what I will be able to do from day to day. 

Despite the frustrations of an uncooperative body, it’s been incredibly rewarding to have this weekend time together. 

Our room is adorable!  It’s covered with wood paneling!  And I went canoeing for the first time in nearly 20 years! 

And, no one will believe this, but Brian actually knows his way around a canoe.  This is particularly important, because I did absolutely nothing to propel the canoe.  Go, Brian!

While Brian was getting life jackets and a paddle for the canoe adventure, I had the chance to sit by myself beside the lake, to hear the birds and insects. 

For just a few minutes, I got to be fully present.  I didn’t have to fight my body, or struggle to write an email, or worry about my next MRI. 


From Brian:

That’s it from North Carolina, folks! 


Thursday, June 2, 2016

Monday, May 9, 2016

Conseula Francis

My dear, dear friend Conseula Francis.
What does it mean when someone--someone I know, someone I love--is gone? I don't believe it.  I'll see this picture of her and think, "Damn--she looks really good!  I'll tell her the next time I see her."  I'll sob, but, later, I think, "I need her feedback on my writing."  When I had the latest challenging experience with my own body, she offered for us to be have bagels and talk.  And now she's gone.

I can't believe it.  I can't see her as gone.  How does this happen?  How do I reconcile myself to a world she doesn't inhabit?  Is it fair for me to have those thoughts?  

I've been thinking all day about Conseula's death, but I don't need to share some of those thoughts.  Much of what I'm thinking is about myself, and I don't want to talk about my own issues today.

I want to speak with Conseula. Who is gone.  Who is no longer here.

Conseula was wonderfully fierce and pushy.  She was funny, even when she was pissed off.  Sometimes, especially when she was pissed off.  Conseula worried about her children and their future.  Even in the midst of her own problems, she always, always made time for her friends.

Ten years ago, Conseula and I left a meeting together.  The meeting was about tenure and promotion, and it left us sobbing and terrified.  So, we formed a writing group with Claire, and years of writing and research productivity followed.  All of us became full professors and the best of friends.

I love Conseula.  I already miss her deeply, terribly.  Someday I will comprehend that she is gone.  But not today.  Not yet.  

Sunday, May 1, 2016

Marriage!

Saturday morning, Brian, Maybelle, and I went to a beautiful spot at the College of Charleston, near the Sottile House.  The place is filled with flowers and big live oaks.  And Brian and I got married.

Marriage!  Spouses!  Partners!

Maybelle and Brian are SO SWEET!
What the hell, right?  We're in love.  We live together.  We trade off about who has to get up with Maybelle in the night.  We share toothpaste.  And here we are:  married.

Holding each others' hands, getting married!
You get to see the entire gear here:  I have my hair
covered with cloth.  I have the Optune
electrodes covering my head and pushing
electricity into my brain.  The backpack is loaded with
batteries.  And I'm happy!
Although the idea surprised me, almost immediately l said, "Yes!  Let's do it!"  In my life these days, I never know exactly what's going to happen.  I'm beginning a list--the joy list--and Brian clearly belongs there.  Here we are:  we're both here and in love.

Monday, April 18, 2016

Everything has changed.

I'm writing because writing gives me a space, a space where I have a moment to reflect.  I sit here, four wires attached to the backpack attached to me.  My neck is starting to get sore because I don't want to have to shift these wires around.  Just stay here, pack of electronic cables.  I want to ignore, just for a time, what this means.

Oh, Optune. What does it mean to have this all the time?
What does it mean for who I am?

Sad.  I'm so sad.
I was able to be encouraging with Maybelle.  She's so curious about these changes, and she kept talking about my hair being gone.  She ultimately accepted it, although I woke her up as I was getting out of her bed.  She kissed me and went back to sleep.

Friday, April 15, 2016