Thursday, August 13, 2015

Growing

I've been upset all day--crying, feeling desperate, having depression creep.

Last Thursday, a week ago, I had the meeting at Duke where they told me that the tumor in my brain is growing.

The tumor is no longer shrinking, or even staying in its status.  For eight months I was on a particular challenging chemo, and it was doing well.  Until it wasn't.  The tumor is growing.  Visibly.  Even I could see it on the MRI, and that's often not the case.  Six weeks ago everybody at Duke saw how great my MRI was.  "Great!" my medical team said.  "Looks like it might actually be shrinking!"  Six weeks later, on August 6, everything had changed.

Not like mine at all.  But you can see how an MRI
deals with a brain tumor.
Sharon walked into the room and sat down in front of me, her knees touching mine.  She never does that unless there's bad news.  "Your tumor is growing," she said.  She held my hands as I started crying, so devastated that I couldn't process what she was saying.  A few minutes later, another doctor came in.  She apologized but kept swearing about the situation.  "This is bullshit!"

What does it mean?  The coherent answer:  My neurologists are taking me into the next level of chemo--the fourth.  This time I'll have chemo plugged into my body.  It's an IV.  I'll have my blood taken every week, and every other week I'll have a full day to go through the IV process.  I won't be sick, but I'm going to be exhausted on the day of IV, and a day or two after.  They told me explicitly that they don't know how it's going to go for me.  It seems pretty clear that I won't be nauseated, but I will be exhausted. But I'll be okay.  I'll be working, and it'll be okay.

The deeply emotional answer:  For the last week, every time I've woken up, I've felt painful misery emerge.  I have the happy moment--"I'm awake!"--and then quickly I trace through what's happening:  "Wait, where am I?  Oh, fuck, it's a brain tumor."  This actually happens for almost every moment:  if I forget that I have a growing brain tumor, it comes back, and it sucks air out of my body.

Sometimes I'm okay.  Sometimes I'm so unhappy that I can't imagine how I am going to get through this. I think at all kinds of levels.  Often it's Maybelle.  I'll wrap her up in my arms and press myself against her (tall!) body.  And the ideas are fighting.  What will I do with Maybelle?  How can I take care of her when I might be so exhausted that I won't be able to pick her up from school?  Who will make sure of what her dinner will be like?  Can I work hard enough that I don't dissolve until she's asleep?

Other levels are far uglier.

This week I've had a hard time writing and talking.  Communication is tricky.  This isn't happening because of the growing tumor--instead, it's that I'm churning.  Parts of my communication abilities simply aren't working.  Despite this challenge, I've got folks who are incredibly supportive, people here in Tennessee who have gone on walks or have had Ralph's Donuts with me.  My parents are so freaking amazing that I'm able to make it through this day.  And experiencing pleasure and support from them makes me feel both grateful and devastated.

So there you are.  If you've been saying kind words--and so many of you have!--then I need to tell you that things have gotten worse.  Are getting worse.  Are a mystery.

29 comments:

  1. Alison: I've been traveling and not as much on-line, but just read this. It is truly shitty news. Or, as one of your doctors put it, "This is bullshit!" It is that. And... I want to write some words of comfort here, but what to write? Mostly, this makes me think of Susan Gubar's New York Times columns about living with cancer, and that she would know what to say here. You've been dealt a really bad hand. I would like to file a complaint on your behalf. Because this really sucks.

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    1. You and I can write the book. I'll be all, "I'm struggling, I've got a thing poking into my arm, nothing seems good to eat," and you'll be the "Motherfucking bullshit" voice.

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    2. It's a deal. Fortunately, I've got a fairly well developed "Motherfucking bullshit" voice. So. Let's get started, eh?

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  2. Yes, this sucks. Cancer sucks. I'm a caregiver now, and we are going through chemo for the first time. It's amazing to learn the things I didn't realize about chemo. I'm sure someday we will look back on this treatment and think it was as barbaric as bleeding George Washington when he caught a cold. But now? It's all we have. Sending you positive energy.

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    1. I'm sending you that positive energy to you, too!

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  3. I couldn't express it any better than your doctor. This is bullshit, utterly. Thinking of you.

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  4. I am heartbroken for you and pissed as hell. I'm also here, filled with love, abiding. May the long time sun continue to shine upon you. May all love surround you. May the pure light within you guide your way on. https://youtu.be/gexkiDmQa9I

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    1. I always appreciate your love and writing. Thank you. I wish I were in a place where I could write all the amazing stuff you write.

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  5. Total bullshit. But you are an awesome, strong, bad ass woman. Fight like hell. Sending you warrior vibes, hugs and lots of love. Xoxo, Cheryl

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  6. I wish I could say something clever or funny or at the very least distracting. I just want you to know I'm thinking about you and this news sucks.

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    1. Great to hear from you! Clever/funny are your talents. Do it!

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  7. I'm sending lots of love and tumor-busting energy your way.

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  8. Alison, all I wish right now is that I could bust into Charleston and doing something, even if really little, to make you smile. I wish I could put some sunshine in your brain. From here, I am sending lots of love, gratitude, and healing light.

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  9. Alison, you and your family are in my thoughts and most sincere prayers.

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  10. Be a warrior when you can and a marshmellow when you can't. I'm praying for you.

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  11. Just remember that you can always call me in the middle of the night if you or Maybelle need me.

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  12. I was so sorry to hear this news. You and Maybelle will be in my thoughts. But it sounds like you may still have several treatment options and an amazing set of doctors! So, certainly this news is horrible, but there's hope yet. Sending love and zen hugs your way, for sure.

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  13. You have been in my thoughts and prayers the last several days, and you will continue to be held in fierce love. of all the notes, here, i think my sentiments most closely resemble Pamela Niesslein's - be a warrior when you can and a marshmallow when you can't. If only the Tennessee Tech Van could come along and crunch this.

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  14. Earlier today I thought of something crappy confronting me and the phrase "this sucks a monkey's penis!" came to mind. So I visit your blog and find this awful news. Peace and healing and prayers and strength to you!

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  15. Oh, fuck, Alison - I've been terribly far behind with my reading this summer but I'd left you doing well and then I come back and…. well, fuck. I love you and I hate that you have to deal with this. I'll be sending you lots of healthy, warm muffin/non-chocolate thoughts. xoxoxo

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    1. Quite the time I'm in, right? Whew. We'll see how it all goes. I need to blog again. I love you, too!

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