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

Thursday, April 14, 2016

My last day with my hair.

Currently not all that curly, but still pretty filled with health.  Can I
embrace my new hair to look like my Dad's?

Things are happening very, very quickly here.  The last time I wrote a week ago, I talked about what I was doing next.  So here's the quick update:  on Friday, April 15, 2016--tomorrow--all my hair will be cut away.  And that's it--they aren't allowed to grow back.  Every couple of days, I'll have to shave it so that no hair can be there to keep my skin and blood from connecting with the Optune (here I'm showing a video of a guy with his Optune).

Oh, my hair.


Check it out!  MY FIRST YEAR AT CHARLESTON!  And Claire was
so cool that she went on a six-hour hair trip with me!  We're both so curled.
We look like cool sisters.  (Still the case.)

Catherine's hair looks different, as does mine.  I love my hair here. I love its
length, and its mild curls.  I love you, too, Catherine!


I have no idea where my Dad and I are (there seem to be
guns in the background!), but here we are:
my Dad makes a classical Lee Piepmeier scowl,
and my curly short hair.
So now I'm agreeing that it has gotten less hair.
I'm recovering from 
the radiation that took
some of my hair.
Maybelle's hair is straight.  Even when it's short, my hair is curly.  This
is a picture from two weeks ago.  Soon my hair won't look like this.

Wednesday, March 30, 2016

Changing my body would help and terrified me.

Preface: What is written below is the result of my challenges with language.  Brian did some minimal editing, but you will see some evidence of the problems I am experiencing. 

*****

A couple of weeks ago, my ability to find words was getting harder and harder.  Getting harder to talk, write, focus.  I went to a guy who does eyes, and after a series of examination it was clear that I have some vision problems.  Where communication and vision are concerned, I'm having a hard time because of a brain tumor.  I talked with Scott, my local neuro-oncologist, that day.  He got an MRI scheduled at 7:30pm on Friday, and he talked with Duke's neuro-oncologist before he called me.  Today, five days later, I've finished a three-hour conversation with the wonderful medical people at Duke.

The brain tumor is growing.  Fast.  For months, since September, the chemo was working.  The tumor had stabilized.  It was great!  And now, in March, everything has changed.

I've been emailing some friends and family with a very close, intense summary about what's happening.  And I guess it's time to do it here, too.

Here's what I wrote on Friday:

I had my MRI last night at MUSC.  This morning, Scott Lindhorst at MUSC called to say that the tumor is growing.  His exact words were that the tumor growth is "subtle, but noticeable." 
At Duke, I got to pick it up, to feel its
heavy head, its head showing that this
person has had to make this work.  Not
excited, but feeling that this is the last
possibility to keep my life moving forward.
He talked to Gordana (my important Duke neuro-oncologist) before he called me.  They want me to go to Duke on Wednesday to make a plan for the next steps.  They're working very quickly on this.  I'll also see Scott on Monday morning and will get to see the MRI scan results.

I'm now back taking the steroids I've been on before.  Based on my previous experience with the steroids, I'll eventually look a mess (puffy), but Scott said the steroids might reduce swelling.  As a result, the steroids also might help me to speak and write more effectively and help with my vision.  To which I say, Hell, yeah. 
After seeing Gordana, we MIGHT MIGHT MIGHT also consider this: 
http://www.optune.com/how-to-use/applying-arrays.aspx 
That involves all my hair being cut off and my entire head getting covered with electricity.  Hello, writing folks!  If my writing gets into gear, I am going to write about this.  Best friends? You are some of my writing team. 
The oncologists aren't terrified, but they're considering this option, along with other chemotherapies.  I'm accepting all support, and am open to all possibilities.  Brian said he's happy to learn more about this and the other plans.

Like you did the last time, send messages to me rather the whole team.  Thank you.   
xoxoxo
Last night, I wrote,
Alright, team, we're here in North Carolina.  At 9:00am tomorrow, we're going to be sitting with Gordana (neuro-oncologist I've been working with for years).  Brian will take notes and ask questions.  The two of us will be asking questions.  And then I'll have information that I'll sit with. 
Informations.  Options.  Questions. 
I'm a super-forward-going person right now.  We're going to Duke!  We're going to be waiting in the cancer area!  Let's do it! 
But there have been times during today's ride in which I've been thinking about the future.  You know they mentioned that scary Optune thing?  Where electrodes are glued to my head, and that's the situation that'll be attached for the rest of my life?  Carrying a bag with my stuff in it.  No kidding--I'll living with Maybelle while I'm covered in electric blopps.  I had a nightmare about it last night. 
This isn't the only thing that could happen, of course.  I'm going to have options.  But the options are getting smaller, which has led me to think about what matters.  What do I want and need?  What do I value?  What matters to me?  Where are my fears, and what are my hopes?  What do I value?  What do I want and need? 
Obviously I should be blogging, but I'm tired, and there would be too much explanation. I will keep you posted. 
Love to all of you,
Alison
Today:
Here's the quick story: 
Brian and I were at Duke for three hours.  The big discussion:  whether or not I should try Optune.  You saw it in one of those previous emails.  It's new, promising, and unproven.   
I'll now be going on a different chemo drug, called carboplatin.  I'll also continue to use Avastin.  Surgery almost certainly WON'T be an option. 
Right now, my brain is getting worse. I'm looking at options, but few, and the doctors don't have much hope about those options for the long term.  Yes, different chemo might work, but we don't know how long this will last. 
I cried and cried.  Sharon, one of my favorite medical professionals ever, sat beside me so that she and Brian had both my hands.   
I'll write more.  I need to think.  In some ways it's much better than I feared.  But it's a totally different world. 
Love you all.

I guess that's what I have right now.  I'm exhausted, but I strongly suspect that at 4:00am I'll be awake.  The other night I was going to get out of bed so that I could put myself to sleep by reading.  And then I remembered: reading can be too much. So I tossed and turned and was so, so sad.

Sunday, March 6, 2016

LH mercy, folks.


Originally, this thing moved in a weird way.  Now it's gone--just a normal
picture of Catherine, Maybelle, and me.
A month.  It's been a month since I wrote here!  I kept planning that I'd write for my issues.  Blah blah blah.  Here I am.

Writing is challenging these days.  Speaking is difficult.  I have continued communication that seems to shift.  More and more difficult.  I am struggling--rest assured.

I've had to read this blog for three times so that I'm can get it across.

So let's talk about what's going on.

  • I'm learning how to do online teaching at my school, and it's kicking my ass.  Others scholars are going along.  Meanwhile, I am spending 10 hours or more. per week (more than this?  15?  20?)  It's so hard.  It's time to dig into my wonderful teams every week. I heard this from a colleague.  She's dong this training once a week.  I'll see what I can do--we'll, I'll try. Kicking my ass.
  • Here's an awful change:  I couldn't remember Maybelle's name twice recently.  Couldn't remember.  May...Mother fuck.  My daughter.
  • I'm teaching a class on Tuesdays from 4:00-6:45pm--a long time, while I get more and more exhausted.  Once a week.  A great group--questionings, speaking, doing so in for conversation.  As the conversations emerge, my exhaustion can grow.  The students are great.  I'm having a great time.  And let's acknowledge what I deal for:  it's hard.  This is a new class.  I decided to teach something new, a 120-level special topics course l that me do let what I wanted.  So the class is Living Different Lives: Feminist Disability Studies (and other ways we’re different). That's the title.  We're having a great time. And it might be challenging.
  • Continuing to have the chemo every other week. Following with exhaustion. You have read about this before. I hope that Chris will publish what I've been writing.  
There you go. Happy Sunday! Maybelle, Brian, and I are about to have some cinnamon rolls.

Friday, February 12, 2016

Great news, and my feelings of uncertainty

I'm spinning.  I've felt worse about the chemos--but the tumor isn't growing, is hanging out, right there as I breathe.  But not growing.  

I'm surrounded by people I love, and they're sending some good vibes my way.  I don't rejection those vibes.  But despite the vibes, my mind sometimes feels like is changing.  It's become who I am:  I'm a person who has a brain tumor, and whose professional is shifting.

Here's the good news--and it's truly good:  we went to Duke last Thursday, and my three experts said that my brain tumor isn't growing.  Gordana said that since I'm six months into this round of chemotherapy, a lack of tumor growth is a sign that it's going to keep working.  We don't know, but it's a good position.  Safe.

When I got out of the meeting, I wrote to all my family and close friends:
I just learned that my tumor isn't growing.  "All is well," said Sharon, one of my favorite medical people.  I'm very grateful. 
xo,
Alison
 I got the perfect, brief responses:
"Woot!!!" "Yay!!!" "Excellent news! I love you!" "I'm going to a lot to write about."  "I'll every moment." "Such wonderful news.""Savor every moment." Trey and Aaron emailed.  My dad and my mom shared such of what they'll to share their love.
I have no idea how Trey found this,
but it seems like it's celebrating.
I do love feelings like that, the ways that I'm surrounded by the people I love.  But my love is...a paradox.  I know I've been paradoxical, and I'm sure I'll say it again.  I feel so grateful, and also sad. Go back and read my post, what I sent to my team.  These readers send back a line of beautiful celebrations, because it's a big deal.  Having the Duke professionals share that the tumor isn't growing--this is great.  And I felt that relief!  But note that there are no exclamation points.  What does "All is well" means--that's calm.  "I'm very grateful."  And I was--I am.  At that moment, though, I wasn't excited.  I was grateful.

Paradox, right?  I'm grateful.  Feeling myself reaching out, but not with big hugs and laughter.  Grateful.  I'm getting both, but that means that I think we're in the middle.  Yes, this is great.  And yes, we don't know what to expect.

This week I had my Charleston chemo.  I've felt so tired that I've slept for two solid days.  This is normal.  The thing that I hated was that while I slept, I had nothing but nightmares.

But here I am.  Loving my daughter.  Taking my time this morning to finish my blog.  Awake right now, and it might allow me to do the things I'm doing at school.

I have nothing else to say!  But I wanted to throw things out there, since I haven't shared with you all for a while.