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

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.

Monday, July 20, 2015

Speaking…hearing…focusing...

My communication is challenging and exhausting.

For instance, yesterday my student said, “Is it possible for us to move our research until next week?” 

“What?” I asked.

“Could we move our research to next week?” 

“I’m sorry, can you say it again?”

I had to ask her one more time to repeat what she said, then when I tried to respond to her, I had a hard time communicating.  “Okay,” I said, “let’s look at the…the…”  I struggled.  “You know, the thing,” I said, making my hands go into a square.  “A…not cracker.” I paused.  “It’s white.  It’s a place where you put things.”  

“Calendar?” my student asked.  

“Yes!”

My post-it still says "We are all doing the best we can."
In my mind I could see the calendar, could see it in my hands, ready to write.  But I didn’t identify useful words there—even my hands making an image was poorly done.  And my ability to focus on her enough to allow me to understand—that was challenging, too. 

I wrote on a version of this in the City Paper in February 11, where I shared that “it's hard finding the right words to say.”  At that point, I wasn’t sure how fully I’d be able to speak.  People listening weren’t worried, though.  My friends said emphatically, again and again, that I sounded just like them.  “That’s just being in your 40s,” said several people.

That was four months ago.  This week, I was talking with my friend Cindi.  “You know,” she said, “last time you were talking-- a couple of months ago--your voice was really normal.  I didn’t hear anything.  Your voice was like mine.  But this time your language is really challenged.”  Her comment wasn’t at all troubling.  Instead, it was validating:  yes, my ability to speak fucks.  I’m not making this up.

Speaking isn’t the only challenge.  So is my writing.  As is the case with speaking, I often know exactly what I want to say, but when I go back and look at what I’ve written, sections don’t make sense at all.  For instance, I’ve been interviewing a woman who’s invited me to her home this summer; she’s allowing me to interview her, her partner, and her son.  It’s an act of tremendous generosity.  She didn’t even mind that I was having difficulty.

In my notes from one event, I wrote, “Not the only, not the best, but a woman who was writing changed what we understood.  Her work wasn’t always knowed in a person way.”  Later I wrote that her son and his friends “have lived together 6 (??) for years in a wonderful, a place that is sup heps u/xxx but is also or home that is there and mainstream a beautiful house.” Because of this kind of writing, I generally go back and correct it, often multiple times.  I also have friends who go over it at least once to confirm that what I’m writing is appropriate and able to understand.  A friend has read over this very essay to make it legible.

I’m continuing to do chemo.  I go to Duke every six weeks so that they can examine everything.  Usually when I’m in some sort of professional role, it doesn’t matter how exhausting it can be—I will be impressive.  Weeks ago, the doctor would tell me that they weren’t really hearing the communicative challenges I was describing.  But at the last meeting, they understood.

“This is what we expect,” said Sharon.  “Your communication probably won’t get any worse, but you’re also not going to get better until you’re off the chemo for a while.”

That’s where I am.  Yesterday, my student was an excellent example of how I’ll talk, how I’ll wave my arms and need to figure out the words that were floating in the back.  The student knew what was up with me, and she worked with me.  

I’ll be teaching this fall, and I’m interested in what will happen.  I’m going to be confident that I can be make the important connections happen.  But I’ll be open to help from those who find communication easier. 

Saturday, July 11, 2015

Leia

I love her.
This morning I was lowering myself to the living room so that I could play whatever Maybelle was it she wanted.  As my butt was almost on the floor, I dropped my Leia coffee cup.

Happy ending!  She was not damaged by this event!  

But the whole experience helped me to feel things.  Yes, of course, I'm glad that Maybelle's fine in the process  Always #1, and Brian and I both spent good little bits of time with her assure her that this wasn't fault.

Then #2 was my attention to the coffee up.  Okay, if I'm going to be honest, Maybelle was immediately fine.  So my attention went to the coffee cup.

How long have I had this Princess coffee cup as part of my life?  Five years?  A decade?  Maybe.  Trey was the one he got it for me. Trey's mostly the Star Wars expertise in my life, even though his true love might go to Star Trek.  I have tshirts--shirts that many loved ones have given to me--but Trey has gotten most of them.  Those shirts are great.  But the most important gift is the Princess Leia mug.

It's more than my respect for the cup--although I do respect it, of course.  But this cup is doing more than that.  It's large.  I wrap my hands around it when it's hot coffee--it's the perfect temperature that lets me have the best moment of the day.  Leia feels confident and tough.  She will kick the ass of people who are standing in her way.  And when she's caught, she remains her strength despite facing attacks on her mind and her home planet--things that terrify or break her heart.  She's one of the heroes in the Star Wars world.  Yes, yes, we all have various kinds of critique we could make about Leia.  Trust me, I do this kind of critique in my job, so I can do it.

But the point here isn't for me to share my critiques, at least not today.  The point for me is ultimately Princess Leia's identity.  When I had the moment this morning that I had lost this cup, I realized that this cup, and the character it represents, is something I'm holding on to.  Clinging.  My body is unpredictable these days, so it's especially important to have my coffee cup and Leia.  I might feel tired, or nauseated, or just sad, and Leia's cup is there.  It gives me a grounding.

Monday, June 22, 2015

My brain

First, I want to acknowledge that this blog doesn't give attention to what this city needs right now, the acknowledgment of terrorism and fear.  Here's one of the things I've written about this.

This post is totally different.  It is my own recent experience, not related to Emmanuel AMC.  For the last couple of days my thoughts have been linked to my body.  This is because on Sunday, Brian and I drove to North Carolina, and this morning we went to Duke so that I could have an MRI scan of my brain.

The ending:  the tumor has stayed the same size, or there is a good chance it is shrinking.  The medical team was very happy with how it's doing.

I approve of the happy ending.  It continues to be my truth that if I make it through this chemotherapy,  my body will become stronger.  I will be able to live longer for Maybelle and, clearly, that's the success that makes chemotherapy worthwhile.  I feel like I can put up with anything as long as the tumor is shrinking.

I haven't had any ambiguity around that, thank goodness.  I'm not having to fight myself into that.  But even so, taking the drugs I'm taking does --as a loved one in my life put it--suck a penis.  Or with even more emphasis, it sucks a monkey penis.  The medicine has the good effect of keeping me from having seizures, but it has resulted in the following revelations at different times in the past few weeks:

  • I feel like shit.
  • Damn, I don't want to have to swear so much in order to feel like a human.
  • No, fuck it, I don't think I have room to feel like a human.
  • Am I mostly angry or mostly terrified?
Chemotherapy is lots of work.  

Other components of the brain tumor:  the chemo I'm taking is working well on letting the tumor molecules and cells and other components drift away from my brain.  That's wonderful, of course!  But I'm having the experience of my speech getting affected in somewhat dramatic ways.  For instance, my chemo started in October, and in the early months, I was hearing changes, but friends would say, "No, you sound just like me!  You don't sound different."  Now that I've been on this chemo for eight months, those friends say, "Yep, there's definitely a change in what you're saying."

My brilliant, amazing nurse practitioner wasn't surprised by this. She said that my ability to speak has been changing, but at this point I probably won't lose any more language or ability to speak.  She said I'm going to become more and more tired.  That I might decide that I want to teach class and then nap.  

I'm in the process--the beginning parts of my processes--of identifying what's going to be most significant during the fall semester.  My ability to speak won't have gotten worse (hurray hurray hurray), but I'll be so tired.  My teaching is--as always--a crucial component of my talking, reading, and thinking.  But this semester I'm  not sure what to do with that exhaustion.  Can I read three things a day to keep me in the loop?  Do I have my students play a crucial role in guiding the class?  I don't know what this is all going to be like.

So there you go.  Driving to and home from the trip, journalists talked about Charleston.  People from all the world want to see the grief.  As we learn more and more about the murderer, it's becoming clear to me that the people who've bee saying he's a terrorist were right.

It matters.  And it's so odd to be in a place in the middle of the the world:  groups that are determined to make it matter, to make sure that the world changes in meaningful ways after nine people were killed for daring to worship while black.  And in another place, I'm a small person whose brain we discuss every six weeks.

What does it mean?  A group surrounded by love in a church?  Me, with a tumor and needing an MRI?

There's no comparison.  It's felt so odd for me, like there's not space in my mind to deal with these two difficult realities at the same time.  But if I breathe and allow myself to experience them both, it makes a difference.