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. 

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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.

40 comments:

  1. I'm so sorry, Alison. This is a terrible situation, but I'm impressed with your strength and courage.

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  2. I hope the Optune option works for you. Fuck hair and everything else. You are a brilliant writer, a loving person, and a fabulous mom! Neither Maybelle nor anyone else will give a damm about electric bloops because you will be with us!

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    1. Thank you, Drue--I appreciate that I can move forward here.

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  3. Thank you for posting this update. This tumor sucks so much. Sending you so, so, SO much love, Alison.

    <3, Nicky

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  4. Hi, Alison. And sheesh. It looks like your only option is Optune, eh? I feel like we should compose a poem out of that — maybe a limerick?

    Said Alison to her misfortune:
    "Goddamn, my best option is Optune?
    This tumor is shit.
    I can't deal with it.
    Hey, Optune: make tumor depart soon!"

    I wish I had something more useful to say than a silly limerick. Surprising no one, I do not have anything more useful to say. Indeed, since it has proven itself to be a notoriously bad sport, this tumor will probably not respond to the limerick treatment. But it's all I've got right now.

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    1. LOVE the limerick! I should hang it in my office.

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    2. Here’s a pessimist-optimist limerick,
      ‘Cause I’m hoping that you can recover quick.
      Even though that’s unlikely,
      I wish for it nightly,
      As do all who are with you through thin and thick.

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  5. Thank you for sharing this horrible tumor update. F this tumor. So much love and strength to you.

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    Replies
    1. Ah, the tumor. That's for your encouragement.

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  6. I love you Alison. To the moon and back.

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    1. I love you, too! Keep being in my family!

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  7. Sarah Lawrence (Vanderbilt '04)March 30, 2016 at 10:37 PM

    Oh Alison. I was just today wondering how you are and I see this now. You changed my life at Vanderbilt. I offer you and Maybelle and the rest of your loved ones my thoughts, prayers, and all warmest wishes.

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  8. Alison--It is sometimes like falling down the rabbit hole. So many unknown choices. You are so spectacular in keeping things in perspective. Sending you healing thoughts and cheering for a chance to shrink that damn tumor. Kathryn

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  9. You are a strong woman, you will beat this tumor!! Your heart and love for your daughter is bigger than anything else, no matter what your options are, do what is best for you and your family. Your friends are here supporting you!

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    1. Thank you, Lindsey--Maybelle and I both share you!

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  10. Thinking of you and your family, friends and medical team. My sister was diagnosed with glioblastoma six years ago. We were told we might get 7-14 months with her, but we had almost two years of life. Real life. Visits, vacations, laughter and love. Do what matters most to you. That is what is important. Live your life according to your values. All the best.

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    1. Thanks so much for what you're what you're saying--I am in a time in my life when I can to "do what matters most to you."

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  11. I'm sitting here with you, Allison, on the west coast. You're surrounded by love.

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    1. As is often the case, I'm sitting beside you, quietly being together.

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  12. Alison, I am so incredibly sorry! Love and al other tumor growth inhibiting energy to you!!

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  13. Dear Allison,
    Though I have never met you, I know Kelly Pipemeier from Unity church in Cookeville, TN, which is how I happened to read your incredibly beautiful, honest and touching post....
    I am so moved by your courage and your openness in sharing your heart and thoughts about the choices you are facing as you confront the cancer growing in your brain. �� :'( I am so sorry that this is happening to you and your family!! I just wanted to reach out to you and let you know that I am holding you in OUR MOTHER /FATHER GODDESS /GOD'S PERFECT HEALING LIGHT AND LOVE! �� Thank you for sharing your BEAUTIFUL SELF with us all! May you be BLESSED & BLESSED & BLESSED.. 3X3!!��

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    1. It's great to meet you, and thank you for the love your sending to me.

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  14. The question marks are hearts but they didn't translate into the post. Much LOVE!!

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  15. Alison.... You are a strong and amazing woman. I wish all of the love that we feel for you could surround you and squash all the freaking bad. Just know you are sooooo loved! 💜 Amy brennan

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    1. Thank you, Amy. I am so grateful for the love.

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  16. Ahhh, but Alison, think of all the cool feminist sci-fi we could write about you and your electric head! There's a real opportunity here! ;). (Hoping that made you smile)

    Still cheering for you on this journey and sending a lot of F-words to the tumor. Much love and light to you and M.

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    1. I definitely approve of the sci-fi person I can embrace!

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  17. Whether you decide to electrocute that tumor or not, I'm thinking of you. Much love.

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    1. Thanks for sending thoughts and love my way.

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  18. Alison, it's Kathy in Nashville. I've been quietly following the unfolding of your story here online, and I guess I just felt too far away to uncloak. So many of us here in Nashville are with you in spirit, we speak of you often and are holding with you like a virtual circle, from the past and present. Peggy and I even thought about getting on a plane and coming to see you. Your ability to articulate and share your experience, even through the communication challenges, helps all of us who had to say goodbye to you all those years ago, still feel that sense of you.

    I remember upside-down sweeping cobwebs off your ceiling at Lichey St., helping you get ready to sell the house. And going to see you with Christie over the holidays when you first discovered the tumor.

    Some part of my heart has been walking beside you all along, and I guess I just wanted you to know. You are a blessing, every step of the way, whether you have all the perfect words or not, whether your emails or blog posts make sense or not. Watching you keep reaching for life has moved me to tears many times, especially your fierce, full presence for every phase of this journey. I have this picture of you just standing in the fire, not running from any of it, just letting each experience, even the sadness, wash over you.

    Sending BIG LOVE across the miles, and wanting you to know there's a gaggle of us, from Tuesday nights at Starbucks and the Green Hills Grille all those years ago, who love you very much and are standing with you in support over here in Nashville.

    Mostly, at this moment, I'm finding that I'm wishing for your dreams to be peaceful, beautiful, spacious, comforting.....so that your sleep is easy and you can get some rest.

    Love love love
    Kathy V.

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    1. Kathy,

      It's just wonderful to hear your voice. I accept every bit of love you're sending my way! Thank you for keeping me in the virtual circle. I've changed and am still changing, as you know. So it means a lot to be valued and loved no matter what, even when parts slip away.

      I just posted some pictures in the latest blog post: http://alisonpiepmeier.blogspot.com/2016/04/my-last-day-with-my-hair.html . They're pictures in the last 10 years--if you have a picture or two from Nashville, I'll post them!

      Love you!

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    2. Love you Alison....so much. Will look around for some pics. There's one in particular, it's out at the cabin (remember when we went and smudged it, and you kept me from burning the mattress???!!!). I'll try to bring it home and scan it....(-Kathy)

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  19. I do remember those days! Such gifts in my life!

    xoxoxo!

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