What should I write?

It's been a while since I've written for The City Paper, and I'd like to connect with them.  It's okay if I write about my brain tumor, since I hear about this all the time from Charleston and all over the country.  But I need to write something that's not exactly what I've written before.  For instance, Chris at The City Paper said, "And it’s cool to mention your ongoing trouble with words, but do so sparingly bc we’ve touched on that several times."  I see what he's saying--I do think about communication all the time, but it's not all that exciting for any of you all.

So:  any ideas?  That's truly why I'm writing this.  Give me some thoughts.  I might be inspired and will write an article for the paper.

Oh, I hate the IV infusion

Let me start with the good things, which are significant and important:

• In the "port place" at MUSC's Hollings Cancer Center, nurses kindly fill me up with all kinds of useful medicine.  They're really nice people, consistently, and I know they are doing everything they can to help me.
• The chemo is working, as I learned last week when I visited my team at the Duke University hospital.
• I only have to have the IV infusion every other week.
• I like the socks that my mom got me.

Lovely socks, not too cold for Charleston.

Now, onto what I'm here to write about.  How I hate it here in the hospital.  I've been here once every other week for several months, and it's gotten worse and worse in my feelings about this experience.  It's not that I'm really experiencing awful panic attacks or severe pain--not at all.  But here are things that make me anxious, angry, out of control.

• This places smell just like the places I've encountered elsewhere in this hospital.  More than anything it smells like baby Maybelle when she was in the NICU, also at MUSC.  She was born, and then she was in the NICU for a full week.  A full week.  You'd have to wash your hands before you entered the room, so every time--multiple times every day--I'd have to scrub my hands with the soap that smells exactly like the smell here.  It makes my heart hurt every time I smell that soap.  I hate it.  I hate Maybelle having to be there in her first seven days of life, only because they were concerned that she had Down syndrome.  There wasn't anything other than that.  After we discovered her fantastic pediatrician, he said that what she needed was time outside every day.
• Damn it.
• It can take forever for the medicine to be delivered.  Once in the last month, it took two hours for them to even bring the medicine for the IV infusion.  I sat in the chair, plugged into everything, but doing nothing.  For an extra two hours.
• That sucks.
• I'm sitting here right now, getting some prophylactic medication for diarrhea/nausea/agony -- that's a good thing, actually, not one that I hate -- and the nurse just discovered that it's actually going to take longer than she thought, because the doctor wanted to see how much I weigh.  I was 139 pounds a few weeks ago.  Now I'm back at 149--which is very good, because it means I'm moving back to the normal weight of my body (155 since I was in grad school).  She discovered that we're going to have to wait some more, because my weight change required a revision in my dosage.  
• What the hell!  
• Now I'm home.  I'm exhausted--falling asleep--but I wish I could take a shower and throw all my clothes in the laundry.  I'm too tired for that right now, but the smell of my clothing is hard to take when the clothing is so near to me.  The smell is the first item on my list of things I hate about IV infusion.  
• Breaking my heart sometimes.

No longer have to wait

Brian and I were at Duke from noon until 5:30pm, mostly waiting.  At 4:30pm, we learned that my brain tumor isn't growing.  The IV infusion medication is working.

It's excellent news.  My Three People Dream Team at Duke Cancer Center were satisfied that this time through, the chemo is working.

I'm sorry that I don't have more to say.  After a full day of that sort of intensity, I'm completely exhausted.  I'm going to finish writing this message and then go to bed.

It was a good day.



[Wait = here.]

Wait

I got up at 5am this morning.  Brian and I were on the road at 6:10am.  I had an MRI at 12:15pm.

And now here we are.  Brian and I are at Duke's Cancer Center, just outside the neuro-oncologists' office where my three medical folks will talk with me.  It's 2:35pm, and we're early.  We've been early every step of the day.  Being early makes no difference--it could be an hour or more before we find out what Sharon, Gordana, and Elaine have learned in the MRI.

Will they see it exactly the same?  Will they see it shrinking?  Growing?  This is a moment when they have to assess this tissue carefully, spending minutes, hours, to see what the MRI is saying.  It's not easy, and obviously they have to take it very, very seriously.

Years ago, my neuro-oncologist was great, although I'm not sure I agree with everything he did. For example, I had an MRI before the holidays.  Lights were up on trees on Rutledge Ave.  We had a Christmas tree in our house.  Maybelle and I were soon going to go home and be with my parents for a couple of weeks.  Jim called (I always call professional doctors by their first names, and they do the same--works well).  My body was instantly flushed with adrenaline.

"It's looking good," Jim told me.  "Nothing to worry about.  Merry Christmas!"

Relief washed through my body.  Here we were, Christmas.  Of course, it was the 2011 holidays--shit was all over the place in the holiday challenges--but they weren't about the brain tumor.

Shortly after the holidays were over, Jim called.  "We're seeing a little growth in your tumor," he said.  The tumor had begun growing before the holidays, but he didn't want me to have to deal with that fear and depression during the holiday season.

Kind, I know.  But not what I want.  This is my body.  I am central to the decision-making here.  The medical team will provide information, then we'll talk to find out what options are available, what they mean to me.  Every time I'm interested in my death and whether it's time for me to begin making those plans.  I feel like a full, blessed, loved, supported person when I'm allowed to be an adult in days like today.

The day before my birthday.

We're still waiting in the lobby.  I'll let you know what I find out.

Being Mortal

Being Mortal:  Medicine and What Matters in the End (2014) is a book about things that matter to me, and are often so distressing that I have to put the book down and walk away.  I would read chunks and then feel too close.  I could see the characters with too much clarity, learning how they're feeling and what are the options available to them.

The author, Atul Gawande, is a surgeon--both, I guess, an author and a surgeon at the same time.  He brings those two things together as he tells stories of patients.  And more than patients:  he's talked with the individuals who appear here.  He's not performing as some sort of withdrawn medical expert.  Instead, he gives details about people's lives, and his own changes become one of the key elements in the book.

Look at some of what I've marked as I've gone through the book:

"People with incurable cancers, for instance, can do remarkably well for a long time after diagnosis.  They undergo treatment.  Symptoms come under control.  They resume regular life.  They don't feel sick.  But the disease, while slowed, continues progressing, like a night brigade taking out perimeter defenses" (26).

Remarkably well.  But.  It's remarkable!  Not what we expected!  A surprise!  But.  Night brigade.  I don't like any of this.  The framing is terrible in terms of my own writing, thinking, experiencing, feeling.  I feel that I'm losing a battle that I'm not even fighting.  I get to frame this, not go by the familiar stories.

He discusses Stephen Jay Gould:

"'It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity," [Gould] wrote in his 1985 essay.  "I prefer the more martial view that death is the ultimate enemy--and I find nothing reproachable in those who rage mightily against the dying of the light'" (171).

Here's another one I find offensive.  Well, maybe not offensive.  Maybe just something that scrapes against me.  He himself is allowed to fight, to have an enemy, to "rage mightily" against the death.  But I don't want to be in that place.  That rage would give me a kind of energy that grows, and it's not the energy I want.  I want to put my energy elsewhere, in a lot of the ways I've blogged about.

"With this new way, in which we together try to figure out how to face mortality and preserve the fiber of a meaningful life, with its loyalties and individuality, we are plodding novices.  We are going through a societal learning curve, one person at a time.  And that would include me, whether as a doctor or as simply a human being" (193).

Whew.  Yes.  This is the kind of statement that makes me step away from the book.  How to face mortality and preserve the fiber of a meaningful life.  So often he examines how people die--in horrible scenarios in hospitals, and in much better scenarios when they're being carried to (through?) their death with guidance through hospice.  I remember Nana, my grandmother, went through hospice as she died. I remember my aunt and dad and I (and other people--surely others of us were there?) sitting with Subway sandwiches.  My aunt kept one hand on her mother's, as Nana lay there, eyes closed.  Her breathing was slower and slower, until she stopped breathing.

It's a respectful, kind, supportive process.  I read the book and think of Nana, and I think of myself.  I want hospice like Nana.  I want beautiful songs and cremation like Frank.

And I go get a cup of tea.  I turn on Netflix for some ridiculous Christmas movie.

Sometimes I didn't have to put the book down, but I'd follow my dad's lead when it comes to frightening movies:  when it's too scary, then you step back and examine the process.  "Look at the way they built that shark.  You can't even believe that it's a shark when it does that" or "Alien is great because we can see all the slime--they're trying to make it really frightening."

So:  Being Mortal is difficult for me to read because there are people dying, people with cancer, people suffering.  So in those moments, I look at the process:  Gawande includes his own narrative with the frightening or overwhelming information.  Look how he slides from others' stories and his own.  How does he include the narratives of others?  One of my comments in the margins:  "Story, info, story via info."  What he includes and what it does--how does he do this?  Would I like to see him write more about his own narrative?

"Well-being is about the reasons one wishes to be alive.  Those reasons matter not just at the end of life, or when debility comes, but all along the way.  Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same:  What is your understanding of the situation and its potential outcomes?  What are your fears and what are your hopes?  What are the trade-offs you are willing to make and not willing to make?  And what is the course of action that best serves this understanding?" (259).

Motherfuck.  This is a way to reject these questions, but Cheryl Strayer would say, Write like a motherfucker.  Can't dismiss the life I'm living.  So I sit here with the questions, and I let those questions float around in my mind, my body, the places I sit, the feelings of the holiday as it emerges throughout the neighborhood.  Smell.  Taste.  Breath.

Stuff that's really good

Drinking a cup of iced coffee on a sunny, crisp morning.

Two of the world's best cookies.

Sitting in the coffee shop, upstairs, writing quietly with other quiet people.

Talent.  Here it is.  None for you.

Downstairs, music is playing.

Several folks are picking up their orders and getting muffins.

At home, I'll be making pumpkin and pecan pies.  I am talented, rest assured.

My parents will be here this afternoon.

My Mama!

My Dad!

LOVE THIS.

Someone told me that she reads what I write.  I don't know who she was.  I felt really honored.

I'm making Christmas plans.

I get to talk to a favorite writer and thinker.

Another friend gave me an ideal gift.

Sweet, hot green tea.

Eating the bits of pie.

Making turkey and learning from my mom's skills.

Have a look at this.  No, really, have a
look.  This is a delicious part of the turkey
gravy maker.

 My Dad brought box after box of delicious food.

I don't feel like listing the food.  But it's good.

And now, the Stuff That's Really Good from my Dad:

This is Alison's dad.  If you think Alison is smart, you should see how smart I'm.  

Lots of good things have happened today:

Naked turkey.  Hello, turkey!

• The Mom is making a super-turkey that cooks at 180 degrees for four days.  
• She's making giblet gravy, but it's too gross to look at.  Tastes good, but we hate watching her. 
• Alison is typing this, and her hair looks good--I don't care what she says.  
• Brian has gone to get us yummy tacos.  
• The house smells like turkey, and we have two pies:  pecan and punky pie.  My children Aaron and Trey and their significant others, Mary and Olivia, get no pie.  
• We have cookies and raspberry swirl pastries and carbonated water, but we keep that away from The Mom.

(Says my Mama, "You know it's all lies.")  (Says my Dad, "You hear her snorting?")

NWSA, day 3, and I'm exhausted

I left the hotel this morning at 7:50am, and I haven't been back here until now.

Now, people!  At 8:00pm!

I'm not sure how I could do it.  Honestly, I'm so tired right now that it's an effort for me to blog about today.  But I'll do the quick, picture-laden approach.  We took 7,000 pictures, but they weren't on my phone, so we'll have to wait for them.

Taylor and I worked together since my first year at the College of Charleston.  She kicks ass.  She'll have a Ph.D. soon.  Two other WGS students I got to see today were also very close to having their Ph.D.s soon--Rachel in May, and Lindsey in another year.

Heather Hewett, Rory Dicker, and I were snuggling together in the snacking-drinking bar we've been at every day.  This was our third evening there.  I'm a bit on the sick side of the food (they only offer five snacks, and we've eaten all of them at least once), but, as always, it was great to see my friends.

And finally, an important component of the conference:

I'm handing something out, and I love the way I'm striding.  Karlyn took the picture and agrees.  There is Alison Piepmeier, walking through the room, ready to hear what you have to say.

National Women's Studies Association, day 2

Today was exhausting.  In lots of good ways.  I just left the big event early tonight because I was exhausted.  Of course, according to my body it was 9pm when the person was speaking, and that's just too late.

I came back to the room and ate six Fun Size Snickers, an excellent way to end the day.

Since I don't have the energy for my descriptions of my day, I'll give you some pictures.

Chris and I are presenting as part of an excellent discussion that I'll tell you about tomorrow.  Tonight, Chris got to meet a lot of my NWSA friends.  Here we are.  It looks like we should be discussing biology and WGS tomorrow morning.

We're in Milwaukee, so cheese is a big deal.  Here we got cheddar cheese squares, cheddar cheese blue cheese, and other cheddar cheese.  Plus some olives.

I've have more pictures soon, but apparently we didn't get as many pictures as I wanted.  So have a look at this.  I was cleaning out my purse to find the Vaseline lip stuff, and here's what I got out of the small part.  Do you see what's significant?

I have a rubber band to pull back my hair in a pony tail.

I haven't been doing it for about a year, and I won't need it again for another year if I keep letting it grow.

Finally:

That's where I'm going.  Right now.

National Women's Studies Association, day 1

Alison, Karlyn, and Rory with a great big selfie. I am
waiting for my food to emerge.  Come on, food!

I ran twice today to get to the airplanes I was riding.  I sat between two very nice people in both flights.  When I got there, I headed to the hotel I'd reserved, but I changed my reservation because now I'm a block or two closer to the conference.  The windy, freezing place.

And here I am!

Today I have eaten a bowl of cereal, a medium sized bag of M&M peanuts, a small bag of popcorn, and the random stuff they give you on the plane (two cookies, one tiny bag of pretzels).  Finally, after I'd gotten to the conference and had made my first presentation, and after I'd gone back to the room and reemerged to the bar with everybody, I got some food:  cheese and crackers.

Cheese!  Because we're in Milwaukee!

At the cheese-loaded bar, I got to hang out with some of my best National Women's Studies Association friends.  I've been attending this conference for about 15 years.  Two years ago I was at another conference and couldn't go (let me assure you that NWSA is much cooler than the place I went).  Last year I wasn't able to go to NWSA--at the last minute I withdrew because I was just too tired rising up from the radiation.  I wasn't fully functional last year until December.

This time, though, I think I can do it.  It's been two years.  I want to be here.  I'll rest--I'll take it easy--I promise.  This is an opportunity to practice communication and to get hugs every time I turn around.  I have three presentations (maybe not the GREATEST thing, but still) on three different days, so I'll have time to rest.

I'm grateful and excited.  Let's see what happens.

This year, it's easy to feel sick. But I don't have to stay there.

I'm having a day that's been all over the place.  Sometimes just fine, but other times I've felt like I was driven over by a big truck.  Today I threw up twice--seems that when I eat today, my body rejects it.  And it's Halloween--and that always means I get to eat loads of chocolate.  Instead of looking forward to the candy, I've slept for most of the afternoon.  It's not a flu, it's just what happens sometimes when my body is processing things in its own mysterious way.

And that processing can suck.  Like, What the hell are you doing?  It's Halloween!  My friends should be out together taking our kids trick or treating, so that I can get eat some of what they catch.

It's easy for me to go into a sad, frightened space.  If I let myself spin, I start wondering if I'll have this Halloween experience ever again.  Is it over?  Will I be feel so dizzy that I can't participate this holiday?

It was the perfect time for Maria, a wonderful former student of mine, to send this article:

"5 Simple Ways to Fall in Love with Life during Illness."

Sometimes the "Leverage" folks come home after a big day, and
they'd like a little chocolate.  Even if it makes them vomit.

 Caryn O'Hara--like me--has had meaningful connections with Maria back when she was at CofC.  And we both have cancer.  I'm reading this, and I'm feeling a bit inspired.  I might not be up enough to be an active person for Halloween, but I could go to Netflix and watch more Leverage.

And if I have a big empty bowl in front of me, can I eat a few chocolates and be prepared?

And there are other ways that sickness can emerge.

It's easy for me to think about myself, the chemo, the effects on my body and availability of communication, my nausea, my exhaustion.  Every two weeks I have this experience that is tricky because of how it operates--makes me ridiculously exhausted as well as needing to be filled up with various kinds of anti-nausea drugs.  After the chemo day, I have at least two days when I'm wiped out and unable to drag myself into coherence.

She's trying to be happy in the picture
with Christy.  But damn, this is NOT
Maybelle with a happy expression.

But five days before my chemo experience was in gear, we had to take Maybelle to the MUSC children's ER.  She had developed the step beyond pneumonia.  I could look up the name of this sickness, but I don't really care:  it means that her breathing wasn't working.  She couldn't breathe enough to fill her body.  At one point she required 70 percent of her oxygen provided--typically, the human body has 20 percent.

Maybelle stayed in the children's hospitals for six days.  Initially they'd her in the basic children's situation, but in the second day they moved her up to the next-to-last most important section of the children's hospital.  At that point she was connected to wires, and her machine observed her oxygen all the time, putting oxygen and liquid into her.  She screamed and cried.  She was uncomfortable and couldn't be made comfortable.

We had a powerful group who was carrying this challenging, difficult time for Maybelle.  I'm now going to offer gratitude for some of the work people have done with Maybelle.  If you'd rather not read this, then now's the time to quit reading. For those of you who care to go on:  Maybelle had loads of family vibes sending to her.  But even more helpful was the fact that Maybelle was surrounded by people who were right there with her.  Brian was crucial to me.  Walter and Karen were there.  Claire, Cindi and Lily, Conseula.  Amanda, Anthony, Chantelle.  Maybelle's principal and one of her teachers.  And of course Christy and Patricia, who were there for this process, getting food, taking care of Maybelle in and out of of the hospital.

I was reeling from chemo.  Maybelle was
reeling from having been a week in the
hospital.  And here we were--finally.

 The amount they did as they process was 1) a recovering child, 2) with a mother who wasn't fully functional, 3) when a partner was working 14 hours a day for a (terribly timed) particular professional week.

Rough, people.  

Maybelle is home, and she's so happy that we're trying to keep her energy level low so that she can go to Nativity School on Monday.  My body has been under a lot of stress for the last eight days, so I'm not at 100%, but it doesn't matter.  Maybelle is here.

My mom and I are similar in so many ways.

My Mama, Maybelle, and me.  Or Nonni, Maybelle,
and the other Mama, the names from Maybelle.

My Mama and I are noticing this as I get older: she and I have the very same smiles, and the same laugher. We often say the exact same thing to the exact same person. Yesterday we both said, “Oh, Maybelle definitely needs her bath.” And then, of course, we laughed in exactly the same way.

We deal with Maybelle in almost exactly the way I do.  It's not that much of a surprise, I guess, but it's awfully comfortable when we behave the same ways.  We're not clean at all.  We have similar emotions and responses.  These days my hair is like hers: she’s chosen short hair, and mine is just what I have, but we look more and more alike.

And my Mama and I are taking on this brain tumor in similar ways. This isn’t what I would have thought: she’s the kind of religious person who believes that everything is God, and that everything will come to the best place. I, on the other hand, am trying to breathe. I’m trying to imagine myself at my imaginary table with many, many feelings, all of which are there.  But we're able to respect each other.  Neither of us is trying to make the other right.

Right now, people online are righting hundreds and hundreds of comments and checks on my mother and my Facebook. My Mama wrote an incredibly happy statement when we were at Duke and were told that my tumor has stopped, and that it’s probably shrinking a bit. It’s great news.  And when I'm feeling funky about this, Mama is there--totally there.

What does my brain tumor mean for my life as a mother?

I have a brain tumor.  I also have a seven year old girl.  Here's my writing about this:  

http://parenting.blogs.nytimes.com/2015/10/06/what-does-my-brain-tumor-mean-for-my-life-as-a-mother/

The most delicious bagel ever.

Ricks Floyd is such a nice guy!  He knows my name and is
ready to make me a bagel.  And it's a damn delicious
bagel.  Go give it a try!

C&B things help make the world delicious.

Yikes, that is SO goofy.  It's not what I said.  What I want to say is that C&B helps make the world delicious.

Hmm.  A trend in my assessment.

So let me tell you about C&B (which I've always called C&B since "Caviar and Bananas" sounds ridiculous and kind of gross.  What the hell brings together caviar--that fancy stuff I wouldn't even use--and bananas, which are  together?  I'm sure a million of you can explain to me why they have that name, but keep that to yourselves).

C&B is fancy.  They have expensive food for lunch.  They have the huge kale bowl so that every woman in town can eat it (does it have any calories?).  In a less frightening way, they have lines of students when they're getting ready for class.  They have blueberry muffins.  All good stuff.

Good morning, everything bagel.

But what I love there--food that is outstanding--is the world of bagels.  First of all, they greet me by name, and they know what I want.  They get me an everything bagel, they toast it, and then slather it with cream cheese.  Wow, it just knows how to start the middle of the morning.  It's breakfast number 2.  I have granola first thing in the morning, and then by 9:00, I'm hungry.  I don't necessarily eat a bagel every day, but I have one…probably at least three a week.

I want one right now.  That may be eating too many bagels.  But I love them.  Love love love.

I've tried other bagels in other places around town, and they're fine, but they aren't as satisfying as the C&B.  These days, if someone invites me to go have bagels, I'd find something else.  There's no need to try another one when I know I've got the best bagel ever.

They always say, "Good morning, Alison!" and Ricks starts the bagel.  Good morning, Ricks!  If it weren't a town that's filled with water today, I'd come get one.

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.

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.

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.

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 (curtisc@cofc.edu).  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 (mayc@cofc.edu) 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

   

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.

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.

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.

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.

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. 

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.

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.

Pictures! Of super wonderful scholarly friends.

I love George and Rachel.  Go look them up.

I had a great time at the SDS.  I'm in love with George and Rachel, above.  George, of courses, is my NRP.  Rachel is my xo friend.

Amber and I.  Because we've done this twice, it's now what we do
traditionally.

Meriah, her friend-whose-name-I-can't-remember, and I were going
for a walk and discovered a traveling museum about the Disability
Rights Museum.  

Our all eating dinner together.  I'm so glad!  Except that George wasn't
in the picture!  Crap.

Meanwhile, how do you think Maybelle was?

Thank you, Heather, for taking her to all her fun stuff.

Day 4 of the Society for Disability Studies conference

This conference has been great.  First of all, there are a lot of impressive people who are impressive for a reason:  they are super-cool and offer up fantastic ideas.  George Estreich was on a panel that was being moderated by Rosemarie Garland-Thomson, and literally every person on the panel was interesting.  Often at academic panels there's one person that you kindly applaud for, but whose presentation is "Eh."  But there wasn't anybody like that at this panel.

I would tell you more, but let's move on to second of all.

Second of all, I'm getting to hang out with some of the people listed/alluded.  George and I have been hanging out, and I think my dream is finally true:  he's my non-romantic boyfriend.  He's as kind and sweet as he is brilliant.  Hello, George.  Welcome to stepping into a more important role in my life.

And, of course, I had two people I love.  They used to be students of mine, but now that they've graduating (a couple of years ago), I can tell them that I love them.  Amber and Beck, I'm delighted to get to see you!  And get to eat with you!  And xoxo!

There are other people who would fit this role, but let's move on to the third of all.

Food!  We've had some tasty food, including one of the chicken and waffle restaurants that has become standard and delicious in the south.  George (ahem, NRB) and I had dinner there one night.  At other places I've gotten satisfying coffee and bagels.  Got delicious breakfast with Amber and Beck. Got an on-the-street hot dog.  Eating--in fancy or low-key ways--is a satisfying part of conferences.

And here comes a satisfying part of conferences.

Three glasses of water lined up on the fancy table.  

In this picture, I wanted to celebrate the water I'd been drinking at a restaurant:  a fancy line-up of water.  I'd been drinking already, as you can tell.

Related, maybe: When one person asked me about my brain tumor, I felt like the table grew silent and our table of people were listening carefully.  I may be making that up, but in general my brain tumor gets people's attention even when I'm not thinking about that.

Okay, the electricity went out at the restaurant, and we ultimately had to leave.  Most of our dinner folks went off for later dinner, but I went back to the hotel.  Here's a celebration in my room:

I guess you can tell without me needing to
explaining everything here, right? My life.

There's more today.  I'm going to get more photos so that you can see more of this conference.  Day 4!