Friday, August 28, 2015

Since I'm doing another sad-ish article at the City Paper,

I thought I'd share Maybelle's birthday #3, on August 26.  One of my delicious places in town needed two solid days after Maybelle's birthday before they could create the world's best cinnamon rolls.  Maybelle's actual birthday was August 24, so she got to open her presents then.  Really there wasn't anything at all for Tuesday.

Then on Wednesday morning, we came to Nativity with the world's best cinnamon rolls.  I'm not kidding about that.  They are second to Ralph Donuts in terms of their deliciousness in the world (and if you don't appreciate how amazing the Ralph Donuts are, then I'll be losing respect for you.)
Okay, she wasn't actually eating cinnamon rolls while
we were taking her pictures.  But she looks happy.

Always appropriate for Maybelle and
I to crack up.
Not the greater photo, but you can see
what a great birthday food she's
eating.  Notice that much of her
cinnamon roll is gone.

LH mercy, do I mention my brain here?  But I'm sort of compelled.  I'm grateful for a day like this with Maybelle.  I have lots of crappy moments these days, but on her cinnamon rolls celebration, I felt so calm and satisfied.

Saturday, August 22, 2015

What made this week challenging?

On Monday, my neuro-oncologist said I should get a port that week.  Soon.  Like, soon.  It's the thing that installs a whole track of stuff into my body so that when they need to pump chemo stuff into me, it's easy for them and not painful for me.  He wants that stuff in, before the tumor takes away any more of my brain.

Tuesday I had so much pain in my head and body that I felt terrible.  I kept taking Advil, and it only took the edge off.  I was afraid that I was going to have a migraine.  I was afraid that this was a sign of the tumor growing fast, being big enough to be hurting me.

Between Tuesday and Wednesday, I was vomiting.

A very serious comment I've written to one of my doctor.
Very shortly after, Brian got in touch with the doctor,
who said that I'm a step away from going to the ER.
Ultimately, I didn't have to do that.
Then on Wednesday I was so tired that sitting up was too much--so I lay in bed.  And slept hard.  In the moments when I woke up I kept thinking I could do something, and instantly I'd become nauseated.  So I stayed in bed for 12 hours, got up for four hours, and then was out again.  I couldn't really be afraid because I couldn't function that day.  I wrote a few emails, and they were completely incoherent.

Thursday I felt better, which is good because my neuro-oncologist wanted me to get my port ASAP.  Since I hadn't been in the ER, then it was time to stick some stuff into my body.  My neuro-oncologist (can I just call him Scott?) wants them to plug me up as quickly as possible.  So I went through that four-hour process (thank you, Claire!).  Nothing to eat or drink after midnight, for a port thing at 3:00pm.  I skipped that and did both.

Friday I felt coherent, but my port hurt while everything was healing itself.  Couldn't really use my arm at all (not supposed to).  Loads of Advil.  Then I was feeling much, much better.  I was (and am) grateful for this product that might help.

Now it's Saturday.  I made coffee cake, then I was exhausted and needed to sleep until 10:30.  But when Conseula and Claire arrived for our SNWF (Super Ninja Writing Force), everything was great!   They saw where I live.  They sat at the kitchen table and we analyzed.  I got a glimpse of this house that will welcome my friends.  After, I wrote them notes about how much it meant to have them at the house, recognizing how much they mean to me, wanting this to be a house that will welcome my friends.

It's an odd week.  Will I keep feeling this up and down, this unpredictablilty?  How am I going to teach?  (Let's note that I haven't written the syllabus yet--but I will!)  Will my mind, my brain, allow me to write, to think?  You know, theoretically I'm writing a book--3/4 of the way through.  Will I be able to finish it?

And of course, when I wrote that last sentence, I thought it the way many of you don't:  Will I be able to finish it before I die?

An odd day.  An odd 16 days.

I'll probably go to sleep again for a nap.

Tuesday, August 18, 2015

Useful change of pace: pictures I loved

August 17 was Maybelle's first day at Nativity School, a super-Christian and super-inclusion school.  She wears the same outfit that all the other girls wear--stripy dress, white shirt.  Particular socks.  Black shoes.  That's a bit troubling to me--What about gender!  Who are you if you don't fit into that ridiculous, limited image?  But at least it seems comfortable for her.

The other thing that is a bit of a challenge is the really committed Christianity.  Fortunately, the place she's going seems like some liberal Christianity, and I approve of that.

And Maybelle is ridiculously adorable.

She was very excited about her morning.
Looking like a first grader, y'all.  Oh, yeah!
This is pretty damned cute.  
My body is producing things that are rough in lots of ways, so it's been so grateful for her to have two days now, letting her explore a new place and get to know her friends.  I wasn't sad at all, which might be a little surprising.  But instead, I was so happy that she's taken the next step.

Thursday, August 13, 2015


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.