Sunday, September 20, 2015

Yep, she's got a brain tumor, too.

Brian sent along this piece from the Washington Post:  "I have a malignant brain tumor.  But it's not really on my mind."  I got the piece this morning, and I didn't read it until just now.  I wasn't consciously rejecting the piece, but I think I was gently walking around that email so that I didn't have to brush against it.  It can be shitty to connect to someone who's talking about a brain tumor.  In some cases I'd rather not do it at all.  Tonight Brian asked if I'd read it, so at that point I did.

The author Whitney Archer feels so similar in certain spots, her experiences matching mine.  For instance, she ends the essay by talking about the night before an MRI and crying.  Another:  she doesn't imagine the future.  It's not a conscious decision.  Instead, it's just what your life shifts into.  She writes,

But being a cancer patient means inevitable loss. I’m more impatient than ever. My son mentioned me being a grandma, and I realized that I don’t picture myself growing old anymore. My timeline has inexorably shrunk to the next MRI and, if I’m being optimistic, next year. Despite my present health, the future holds both hope and terror.

Three generations!  Kelly, Alison, and Maybelle.
Hope and terror.  Yep.  Loss.  Impatience.  I know I've talked about this, somewhere--about the way friends worry about wrinkles, while I embrace those wrinkles because they mean that I'm still alive.  I'm so grateful to be in my 40's, because I was 37 when this started. I'm getting to see my body move to the next part of my life.  More importantly, Maybelle was 18 months old when this started, and now she's 7.  Gratitude.  Impatience.  Let time move along so that I can be with Maybelle, so that I won't have to drag and worry.

More connecting with Archer:  she writes about the ways people speak about cancer.  She refers to the use of "'battling' it" and says, "the vocabulary persists: Cancer is an invasion; patients wage war against an army of rapidly multiplying cells."  She said her metaphor is dual citizenship.  Like she does, I know that the full "We will kill this battle!" isn't helpful.  My imagery this year has worked with a list Catherine gave me:

May I be safe.
May I be happy.
May I be healthy.
May I be at peace.

I run that set of images in my mind again and again.

As I read the article, and as I wrote this page, I kept wondering how Archer and I are different?  This is a ridiculous comparison I'm making, but I can't stop myself.  She and I are different because I'm in a much more serious world of the brain tumor.  She's not on IV infusion.  I have to be in the hospital every other week.  Big lump under my skin.  Never allowed to have Advil ever again.  Etc.  My brain tumor is more serious than it has been.  More and more.  And I guess I want recognition of my suffering when I read Archer's essay.

But that's an effort for clarity, for status, for defining myself by framing myself against her.  Offensive and not interesting, either.  As I said at the beginning here, Archer and I have many, many things in common.  I'm going to imagine her as a friend.  Hello, Archer!  I hope you'll be getting to bed soon.

Wednesday, September 16, 2015

Things I Like

Starting with a question:  Is that an appropriate title for these themes?  Do I like things or love things?  Should I have a thematic row of things (all bagels or something), or just go with whatever?

At this point I write what that I like.

Blueberry muffin, iced coffee with the skim milk.
And look how great he is!  Myles, I love you!
He let me take his picture!  He deserves an award
of some sort. Got a Star Wars idea, anybody?
He and I talk about three times a week.
So, good afternoon,  Delicious Can't Remember.  Brown's Court.  Brown's Banana.  (The winning location = Brown's Court, although Claire voted on Brown's Banana.)

Brown's Court is great.  It's not located in a busy place, so it's quiet.  There are often folks upstairs, and we all have our computers with stuff in our ears.  Nobody's talking--or if they are, their conversation is quiet.  It's ideal for studying, and for hanging out for a couple of hours.

The place is actually a bakery, as the info above the name says (Brown's Court Bakery).  I think they make loads of deliciousness because of breads--the baguettes.  They're selling this bread to restaurants all over town, along with a billion other kinds of food.  

Those who come to hang out have options for a lot of food.  Muffins, all kinds of croissant, and how about this:  the cookie that's constructed by Captain Crunch.  That cookie is surprisingly fantastic.

But here's the big surprise:  I think they have the best coffee around town.  I'm not in the educated love for coffee, but that doesn't matter.  Who cares about how much this matters for me?  Not much.  I find this coffee so satisfying.  It's cold coffee, and 1/3 of the coffee container is empty.  I've gotten to add a lot of skim milk into my coffee.  Loads of skim.  I've tried this very approach to other kinds of coffee, and they're great--but not as great.  Sometimes I don't have coffee on campus at all.  It's disappointing.

Brown's is consistently coffee wonderfulness.

Plus, they greet me knowing who I am!  They've read what I've written on The City Paper, so they often know me, but instead of wailing and "This is so awful," they say, "Damn.  I'm sorry."  And then they give me my delicious coffee.

There are other places town down that have great places to drink coffee.  As I suggested, those aren't offering coffee that's disgusting.  I'm not suggesting that they should be avoided.  But if you have time, walk up on St. Philips, from between Canon and Spring St, then you can have a calm cup of iced coffee while you're upstairs reading my blog.

Saturday, September 12, 2015

I'm still here.

It's Saturday, September 12, 2015, at 7:47pm in Charleston, SC.

On Wednesday, I had my first IB infusion, with two gooey liquid medicines flowing into my body--into a hard, round port, the hard, weird creation that I had inserted two weeks ago.  I could tell you about that process, but it's probably not that interesting.

The IB infusion is the next step in this whole brain tumor stuff.  The other treatments only got me so far, so we're trying something more dramatic.

People have wanted to know what's going on, and I respect that. So, things going on:

  • Day 1 (Wednesday), I cried through a lot of the pre-preparation for the infusion. Thank you, Cindi.
  • That day took 7.5 hours to get my body used to these changes. Thank you, Cindi.
  • After the infusion day, I slept for about two days.  Not an exaggeration.  
  • Friday and Saturday, I've been trying to wake up, feel functional, and that's working for one or two events during the day.  After that, I'm wiped out.
  • The doctors have assured me that this will stop, that I'll be able to do all the things I'm used to, that I'll be back to my energized person next week.
  • Is that true?
You know about my love for Princess Leia (like here, here, and here).  I'm sort of surprised to discover that a person adding to the support for me is Chewbacca.  He's powerful, fierce, but also has real sympathy, even fear.  He's here, hanging out with Princess Leia.
Hello, Chewie.  I'm glad we're here together.
That's where I am right now.  I'm exhausted because I've been writing for 26 minutes.  I'll share more with you, though.  I'll wake up eventually and say more.

Wednesday, September 9, 2015

No Immediate Diarrhea

WARNING:  This blog has been temporarily hijacked by Alison's friend, Cindi.

    I am sitting with Alison as she receives her first infusion of the kick-ass chemo drugs that will, we hope, prevent tumor growth and reduce brain inflammation.  Before starting this lovely 3-hour infusion process, Alison had the pleasure of listening to all of the many, many potential side effects of these two new meds.  In a nutshell, she may feel poopy - both figuratively and literally.  The chemo may wipe out her energy.  In addition, Alison learned that she may experience diarrhea - and here is where it gets interesting/disgusting - both "immediate" and "delayed."  Seriously?!  This drug can create a "pooping emergency" as you get infused, and then the ugly symptoms can recur days or even a week later.  Oh joy.  The good news of the day is that Alison has completed one medication without any gastric disturbances.  No immediate diarrhea. We are thankful for the small things today.

     I know what you are thinking:  What can you do?  How can you help?  These thoughts have run through my head as well.  If you want to help with meals, please contact Claire Curtis (  My sense is that Alison will be tired and would appreciate some yummy food that she does not have to prepare herself.  If you want to help in other ways, email me ( and I will try to work with Alison to figure out what kind of help might help.  Of course encouraging emails, cards, etc. are appreciated…but there may be other ways to provide the concrete support that Alison may need over time.

     Here's hoping the  next post reads, NO DELAYED DIARRHEA