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.