Sunday, October 12, 2014

Effects of radiaton

Here are the things I'm eating these days:

  • Granola
  • Yogurt
  • Popcorn (NOT the microwave kind)
  • Clementines
  • Apples with Jif peanut butter
  • Bread with Jif peanut butter (only the kind of whole wheat bread that my mom buys)
  • Sometimes chips and salsa, although thinking of it right now makes me feel a little sick.
  • Ice cream
This is one of the effects of radiation.  Anytime I'm hungry--or feeling the mild sickness that makes me suspect I'm hungry--I go into the kitchen and wander around to learn what's edible at that point.  It's fortunate that the things I'll eat give me a fairly decent diet. That's not a choice--just luck.

And yesterday the left side of my head had become one huge swirling tangle.  I intentionally and aggressively combed out that tangle, and here's what happened:
Notice that there are two 8 1/2 x 11 sheets of paper here.

Hair is falling out all the time, so I carry a Rubbermaid container around to places where I sit.  The only reason I care about my hair is that I'm having an important meeting on Oct. 21.  But I'm meeting with nice people, so I suspect they'll realize that there's nothing I can do about this.

When the radiation ends and my body starts recovering, I'm going to cut off all my hair.  And eat all the favorite foods that my body currently is rejecting.

Friday, October 3, 2014

Good things and...challenging things

Good:
I just got mentioned extensively--and fairly positively--in something called The Week, and initially I didn't read that because stuff that has pictures of tiny babies usually uses my work as horrible stuff, and I just don't read it (blah, blah, blah, supportive of reproductive justice, how terrible Piepmeier is, blah).  Apparently this magazine is cool, though, so have a look.

Challenging:
I pushed my mom to go home, refusing to recognize that I'm in the most physically challenging experience of my life (hello, radiation treatment--you are exhausting!  I mean, really, really exhausting!)    She seems willing to come back in 10 days.

Good:
My mom is willing to return.

Challenging:
At that point I'll have three weeks left on the radiation, and I'm struggling with asking her to come back.  She has a billion friends in Cookeville, where she lives!  My dad doesn't come move in with me!  Three weeks is a long time, particularly considering that she's been with me since August 15 (with significant breaks when my friends have come to stay with me).

Good:
Friends have stressed to me that if anything in the world happened to Maybelle, I would be there for as long as she needed me there, no question of it.  And of course that's true.

Challenging:
Have y'all noticed how much I'm willing to push myself?  To prove that I can do this?  Both to kick into my anxiety right now, and to show the world (mostly myself) that I am okay, recovered, able to be a professional?

Good:
Because I had brain surgery and I'm having brain radiation, I'm not experiencing pain.  If I do have pain, Advil cures it.  And if I feel nauseated (which happens a lot), I take Zofran which is a miracle. I have the kind that dissolves under my tongue, and I'm feeling okay in about 15 minutes.

Challenging:
But I'm recognizing that this is the most challenging physical experience of my life.  See challenge above.

Good:
Maybelle's kindergarten class is so wonderful that I want to throw myself on the floor with joy.  Maybelle feels that way, too.  Hurray for you, ECDC!

Challenging:
I'm too challenging in the mornings to take her to school. I'll be going to bed very soon.

Good:
I love writing.  Love it!  I have a blog to write on, and even more importantly, I got some fantastic and very helpful suggestions for my book--my book!--that will allow me to keep working on the book I really love.  I have an introduction and chapters 1, 2, and 6 in progressive states.  Woo hoo!

Maybelle is focusing on her feet because she's determined
to learn to peddle her part of the bike.
Challenging:
I'm just so tired.  It's taken me three days to write this blog post.  It's taken me five days to address possible revisions for my book.

Good:
Maybelle and I still remember how to ride the bike!

Challenging:
Mild expressive aphasia.

Good:
My neuro-oncologist assures me that this is temporary.  Caused by brain surgery and radiation.

And now I'm going to bed.

Saturday, September 20, 2014

Kicking my ass.

I've now had two experiences of radio therapy/radiation therapy/something that multiple doctors have described.  And it might be fine, might allow me to have as much energy as I've been having.

But right now it's kicking my ass.

I'm so tired.  I feel like I could sleep much of the day.  I could wake up to play with Maybelle in the afternoon and evening, but for the last today it's been a real question about whether I should go to bed at the same time that Maybelle does (7:30).  Last night I went to bed at 8:30.  Unfortunately, Maybelle decided that 5:00am is a great time to get out of bed, so I'm downstairs guzzling coffee.  Coffee is delicious.

But I'm so tired.

Radiation therapy does't hurt, so that's a plus.  But it's messing with my ability to talk.  I can still talk and write, but it's clear to me that both are more challenging.  For the last two days I've forgotten how to say certain nouns, and I've had to describe them to friends.  My life is almost like charades (a word I had to look up before I could writing it here).  This is a common reaction--nothing to work in a frightened way.  And my friends are saying it's fine.  But it's making me frustrated.  Grouchy.  Who the fuck am I when I have a difficult time talking?

I'm incredibly fortunate to have people come to stay with me.  Thank you, Mama, Catherine, Eliza!  I'm incredibly fortunate to have friends taking Maybelle for big chunks of Saturdays (thank you, Cindi).  I'm incredibly fortunate to have friends who make food (thank you, Andrea and every body who delivers delicious dinners).  I'm incredibly fortunate to have friends who take me for walks, go get my groceries, pick Maybelle up and take her to dance class and bring her down.

Etc.  I can't list everyone.  I have a group of supporters who are amazing.  I'm grateful.

But I'm so tired.  I foolishly agreed to assess two academic articles.  What was I thinking?  Last week I could have done it.  This moment:  no way.  I'm having a hard time doing almost anything (although look:  I'm blogging.  I part this is because I plugged Maybelle into her iPad, and I'm trying to keep myself awake.)

So here's a positive picture:


Tuesday, September 9, 2014

Muffins

So, so many of you have read my article for the City Paper, made up of some blog posts and some journaling about my experience of my brain tumor and brain surgery.  I feel good about the article--it conveys thoughts and feelings of mine that weren't necessarily easy for me to identify.  (I'm freaked out by my huge head on the cover, though.  Really freaked out.)

The surgery was 28 days ago.  I've been home since Sunday, August 17, with two live-in caregivers:  my mom, then Catherine, then my mom again.  Every late morning I feel exhausted--I might look like all is well, but people who are close to me (mom and Catherine, for instance) recognize how my smile changes, how my eyes become a little dim.  And then I go nap for three or four hours.

As the days pass, I've been able to stay up a bit longer in the afternoon, and a bit longer in the evening.  And because of this extra time, I've discovered something that's soothing to me as well as...what...creative.  It almost allows me to feel functional.

I make muffins.

Muffins are easy to make, unlike pies.  You mix dry ingredients and wet ingredients, then you mix them together (not much! Only enough to get all the dry parts wet).  You put them in the muffin tin and bake them.  And there they are:  muffins.

Banana buttermilk muffins.  With
brown sugar on top.
So far in muffin-experimentation I've made blueberry, pumpkin with pecan topping, doughnut muffins, and chocoholic muffins.  Then I tried a different pumpkin recipe to compare to the first.  Hard choice.  Today we had bananas that were turning significantly brown, and buttermilk that was running out, so I made banana buttermilk muffins.  Later this week I'm going to try a batch with cranberries.

I eat several muffins after I make them, but my delight doesn't really seem to be about eating them.  It's about making them.  Smelling them--they send all kinds of great aromas throughout the house.  Watching them become more solid in the oven.  Appreciating how they look sitting on the kitchen counter.

You should also know that the real food--protein, veggies, etc--are made by my friends and neighbors.  Even if my intent were to get a full diet through muffins, I believe my friends would be critical. And rightly so.

But back to delight:  my delight speaks to me about where I am right now.  How my life is.  I spend most of every day in my house, which smells delicious.  Maybelle spends her mornings and her evenings with me, but I'm in no way cut out to be a single parent right now.  Things are changing little by little with what a day looks like--for instance, my mom and I walked for two miles yesterday and today, and it felt great (and this is something my doctors want me to do:  exercise as much as I can).  But things aren't changing dramatically. Healing is a process.

And it's a process that continues to be a sort of gift.  Much of the background stuff in my life has been pushed away for now.  I don't have the energy to be the administrator to the Women's and Gender Studies Program (and fortunately the person who's doing it is amazing).  I don't have the energy to make plans--even to answer emails on a regular basis.  It's exhausting for me to read things that are difficult (so I'm reading romance novels--fun!).  Right now I often can't understand formal descriptions of life at a university--stories, yes, but not detailed explorations of how these kinds of places operate.  These lacks of connection don't feel like problems; they feel like my opportunity to identify what really matters to me.  My life has focused:

  • I love Maybelle.  This one's easy, of course, and my time with her isn't distracted.  I'm able to sit on the floor with her and play with her girls, or sing "Row, Row, Row Your Boat."  I sit on the porch with her early in the morning.  These days she looks for stars.
  • I love the women whose care surrounds me at all times.  Okay, for 30 minutes I've been thinking about this gender thing.  I don't think that someone has to identify as female to be such a powerful source of support for me, but the people who have moved in with me, who are with me every day, who take me out for coffee, do identify as women.  I think this is significant, but I suspect that's going to become its own blog post.
  • I love the opportunity to follow my needs as a day progresses:  to sleep, to wake up and make random lists, to feel my energy changing little by little.  To think about my book project.  To be curious about the feelings that are emerging and changing.
  • I love sitting and eating the wonderful food my friends make, sitting with my mom or with Catherine or other friends.  These meals allow us to talk, but not in ways that are deeply controversial--particularly when these controversies relate to the world in ways that aren't connecting with me.  I sit quietly then, or I'll switch the topic to something I do care about:  How was your day?  Do you want to hear what I want to write about when I'm able to? How are you feeling?

It does seem that right now, making muffins is an ideal activity.


*Editorial work:  It's taken me three days to write this.  So:  I'm still recovering.

Friday, August 22, 2014

One week anniversary

I suspect at this moment seven days ago, I was lying in my bed in the ICU with bandages and needles all over me, with the medical team trying once again to figure out how to keep me from throwing up.  Or maybe they'd finally gotten it right and I was asleep.

For all morning and quite a bit of the afternoon one week ago, I had brain surgery.  Successful surgery.  Exactly one week ago.

Family and friends sat in the waiting room.  Waiting, waiting for hours.  A really kind friend who lives in North Carolina did exactly the same calm, thoughtful generous thing that she did four and a half years ago, when I was having this surgery:  she brought a delicious lunch for everyone who was trying to distract themselves.

Meanwhile, I was talking--unable to feel much pain but conscious and able to read word cards, identify basic images, even talk about Maybelle.

All you readers know this.  It's not new.  But I find I want to get it out of my body a little bit, to sit back and be able to see it from a few inches away.

I've just taken a four-hour nap, which means for a little while I can communicate by writing--using words without the kinds of gestures and body language that help my mom to be able to nod and understand exactly what I'm trying to say.  My language is and will be really fucked up here, as I was warned by every medical professional I encountered.  Fortunately, the language tangles are temporary--just part of the process here.  But for now, if I want to be in touch with people via any words, I have to have rested really well immediately ahead of that effort.

And now that I've rested and given you a bit of my post-surgery reflections, here's what happened this morning.
Mama and I went to Wildflour this morning to get the mini cinnamon rolls mom ordered for Maybelle's birthday party at school.  Today isn't her actual birthday--that's Sunday--but the timing worked out so that this was her celebratory day at ECDC.

As we took this picture of ourselves, I realized that it's been more than a week since I've had a moment like this:  sitting in a pastry/coffee shop, having a cinnamon roll ourselves as we waited for it to be time to head back to school.  It felt like a new kind of real life, like, "OH, right--this is the sort of thing my life can look like!"

On the one hand, I've barely been out of commission at all.  After only seven days, I'm able to go out to help with my daughter's birthday gathering.  And at the same time, it feels like a world away.


It didn't take me long to recognize a crucial component of my morning birthday celebration:  I had a second cup of coffee at 9am, and that meant I was able to stay awake--barely--during Maybelle's celebration.  It was another kind of realization:  this is an easy thing that adults do all the time, have a second cup of coffee.  And yet it feels both familiar and bizarre at this moment.



The birthday celebration was wonderful.  The class sang a series of songs to Maybelle, and she got to march and dance and circulate the room.  I'd written her a little book this morning about her birthday, and she read it to her classmates (very nicely, I must say).  She seemed to have just about the best morning imaginable.

Then I went home and slept.  I'll get to spend the rest of the evening being an exhausted, but happy, mother and daughter.



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Previous posts about tumors, choices, etc:

Monday, August 18, 2014

Go home, said the man the moon, go home.

This is me looking good.  If you want to see the nasty
stuff, scroll down to the bottom of the post.
Look at me!  As 97% of people on the planet (most of whom are on Facebook) know this, but to be sure that this fact is widely known:  I'm home!

Hundreds of you have been supporting, loving, and sending all kinds of good stuff my way...this has really meant a lot to me.

But even as I sit in the luscious sofa in my super-comfortable home, one of the things I've learned is that I'm having incredibly bad language skills. I'm not speaking or writing particularly well (although my mom actually said I'm speaking better than writing. Evidently the thoughts aren't translating to the written word as well as I think when I'm writing them.) Therefore my mom is taking down this blog post from my dictation.  It's a new kind of blogging for me.

The vague messiness about my communication is another weird moment in my life, which, I guess, is always to be expected when you have brain surgery. Dr. Friedman removed a quarter of my skull and dived into my brain. This time I was quite awake for the surgery, so when it was time for me to read cards or talk about Maybelle to the speech guy, I could. And I can still remember the basic words I was supposed to be able to demonstrate (like seeing a picture of a duck and saying, "Duck").  I'd also coached speech guy to bring Maybelle into the conversation since she'd be a very motivating factor to make me want to stay there awake.  Dr. Friedman did some surgery, then he brought out the in-room MRI to see what other bits of tumor were still there, then he dived back into my brain for another round.

Later Dr. Friedman came my ICU and said he'd gotten more than he expected: almost all of it out.

The 6+ plus hours of my surgery were great, and then they were followed by to a lovely experimental process.  Nurses and PA's were doing anything they could to get me to stop my extensive vomiting.  They worked on this effort for 3-4 hours, shoving multiple things into my IV, but only when they gave the third medicine more than once was I able to curl up in the ICU and rest.  As it turns out, though, I was doing so well they released me to the hotel straight from the ICU on Saturday, the day after surgery. And then said if I were doing as well the next morning I could go home to Charleston - which we did!

Yow--that's ugly!  But all kinds of
stuff healing.
The funky-ness of my language hasn't yet become distressing, but that's because they told me that it was to be expected, and it will go away - fairly soon.  For right now it's good for me not to be solo in a conversation...for instance my mom has said to me, "Honey, you've used the word 'intimate' three different times, and it doesn't apply to any of those situations." It's good I got the semester off from teaching, because the students would have thought it was hilarious.


We got to Charleston Sunday afternoon -- WAY before we thought we would. In general I'm feeling pretty good. Maybelle is thrilled that I'm home, but let's face it - she's far happier about seeing her Nonni.

Thursday, August 14, 2014

Two penguins walk into a bar

This isn't truly a grouchy face.  I was falsely
grouchily showing off the plastic knobs on my head.
My brain tumor surgery is tomorrow morning.  Starts about eight hours from now.

So for that reason, I'm offering a slightly more upbeat post.  I'm not going to be falsely cheerful, but I'll share a few things that aren't entirely focused on fear/danger/pain.  Instead, I'll tell you other aspects of this process.

For instance:  last night my mom and I arrived at our very nice hotel to get ready for today's 8:30am pre-op process at the Duke hospital.  I went out to the car to get my suitcase, which not only has my clothes, toothbrush, and books, but also my medicine.  The seizure medicine.  Which I have to take every morning and night.  The suitcase is fairly important.  So here's evidence of how freaked out I am:  the car was empty.  No suitcase.  I carefully packed it, then left it at home.  Because mom and I were able to get replacement seizure drugs at CVS, the situation was funnier than it was distressing.

And here's another example:  After I wrote about gratitude and pain the other day, I've gotten probably 20 emails from students telling me how important I've been to their lives--in ways I wasn't aware of.  Plus, as I'm sure you've noticed, there have been some powerful comments on the blog (Robin Bowers, I'm talking about you) and on Facebook (SO many of you have written things that have moved me).  Wisdom.  I'm trying to breathe it in.

Freaking delicious.
And another:  after I went through a series of exciting pre-op activities (urine test, blood test, EKG which required a guy to put all kind of pasty stickers on my naked boobs), mom and I were told by multiple staff people--including the admissions person--NOT to be admitted until we'd had some good food to eat.  "Once you have your bracelet on you can't leave," they sort of whispered, "So go now!"  We went to Nosh and I had a fantastic brunch:  French toast with peanut butter and bananas.  The best food I'll have (and have the appetite for) in days.

And finally, I'd like to celebrate friend-from-afar, Kris.  She became part of my life five years ago, when I was diagnosed with a brain tumor, because she'd had one recently, and a women's studies friend had connected us.  The brilliant thing she did was text me with jokes every day leading up to the surgery. She's doing it again!  It's fantastic.  I'm eager to read every text she sends.

So I'm going to offer two.  #1 is my favorite.  #2 is most appropriate to this evening.  You can read either or both--your choice.

#1:  Two penguins walk into a bar.  The third penguin says, "Huh--you'd have thought the second one would have seen it."

#2:  A brain walked into a bar.  "I'll have a pint," she says.  "No way!" says the bartender.  "You're out of your head!"

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Previous posts to give you background: