My 6-week check-up at Duke

Biffle, Maybelle, and I headed up to Duke at the beginning of this week for my six-week follow-up visit.  We met with Friedman and with another MD from the Duke Brain Tumor Center.  The short version of what we learned in these visits was that I'm doing as well as I feel like I'm doing, which is very good news.  I also learned some other things that weren't as important, but that some folks might want to know:

• Friedman wasn't able to take out as much of the tumor as he'd hoped, but he still thought the surgery went very well.
• The path report shows that my tumor has probably been there 10-20 years.
• Although many low-grade gliomas do become high-grade, taking out a big chunk appears to reset the time clock, so it'll take this tumor a lot longer to start growing more quickly (if indeed it does--the second MD I met with, the guy who'll be my go-to person now at the Brain Tumor Center, was always careful to say "If it starts growing faster," not "when.")
• For the next year, I'll be having MRIs every two months and visiting the Brain Tumor Center at Duke every four months. If the tumor isn't growing quickly for that year, then we'll start slowing down the schedule of MRIs and visits.  The MRIs will be done locally, which will make this process fairly easy (plus I think MRIs are really cozy).
• Almost no research is being done into why low-grade gliomas become high-grade and how to prevent that, so that's a bummer. Biffle claims this is because the medical community is not interested in dietary matters.
• I will probably always be on anti-seizure meds because I appear to be very prone to seizures. But the Keppra is working great with no apparent side effects, so hurray for that.
• Mixed signals about pregnancy. Friedman was all over having more kids, although he didn't care how they came to be part of our family. The Brain Tumor Center guy was wary of how pregnancy might affect the tumor. Both MDs said to talk with a neurologist, because the anti-seizure drugs don't work well with pregnancy. It may well be that if we have Baby #2, s/he will be adopted.
• I am allowed to have all the coffee I want.

I was going to include Friedman's extra-adorableness as part of this post, but I think it deserves its own post. Stay tuned.

More words

Editor's note:  I know I said this would be up "tomorrow," but I meant tomorrow in blog language.  Also, we're headed to Duke soon to meet with my team, so we'll see what they have to say about all of this stuff below.

More thoughts on word usage: since I’ve clearly turned a corner and entered a new kind of energetic lifestyle that is, in fact, my old style—frenetic, happy, driven, and full of ideas—I’m discovering some of the language changes that have taken place that weren’t as visible before. Eliza and Biffle are right that I haven’t changed much, but I have changed. Perhaps these changes are just transitory parts of the recovery process, or perhaps they’re new elements of my language functioning. Regardless, they’re here—at least for now—and they’re minor. If they are permanent, who cares? I’m doing great. But I want to acknowledge them.

For instance, the other day I couldn’t come up with the word “hyperbole.” Biffle did as the speech language pathologist advised and tried to give me some hints, but they didn’t work. Even with the clue that the word starts with “hyper,” I couldn’t come up with it. He finally said “hyperbole,” and then I was all over it, talking about my concept being hyperbolic, but before that I could just say, “You know, exaggerated, intentionally over the top—it’s a literary term.” It is, of course, incredibly valuable to have been able to say what I said to describe the idea, and in a class or conversation I can easily steer around forgetting the word hyperbole so that it’s invisible to the person(s) I’m talking with. But still.

Another example:  These days I sometimes forget lyrics to songs I’ve sung many times to Maybelle. I remember lyrics weirdly easily, and the ones I’ve been forgetting have generally been in complicated songs like They Might Be Giants’ “James K. Polk.”  This is not a life-challenging situation, but it’s definitely different—I don’t remember this happening before in my life.

This morning I’d been on the computer a bit, and I said to Maybelle, as I was fixing her oatmeal, “Are you ready for your email?” These sorts of word slippages are common for everyone in the world, but they’re happening a little more often around here. Again, not a big deal, but one that I might have to acknowledge in public settings and figure out how to work around. Biffle suggested coming up with some sort of humorous way of acknowledging the brain tumor, but I’m leaning more toward matter of fact. One because humor isn’t my strong point, and two because my brain tumor is like Maybelle’s Down syndrome is like Biffle’s and my need to wear glasses: it’s just part of who I am these days, and it doesn’t need to be apologized for or justified. (Although I will say I’m not at all dismissing the humor possibility, because Biffle and I are both aware of the need for humor in educating folks about Down syndrome, thus our “My kid has more chromosomes than yours” bumper stickers.)

Words

I’ve always been a person who forgets words, who is awful with the details of any novel, article, or nonfiction book I’ve read but haven’t taught, and who has a hard time keeping track of multiple conversations happening at the same time (“Okay, what led us to talk about tabouli? I know I had something else I wanted to say about the previous point!”) I’m the world’s worst at crossword puzzles—again because of the necessity of coming up with certain words or who wrote a certain novel I read back in 1989. Trustworthy reporters (namely Biffle and Eliza) back me up on these observations about myself.

These have never really bothered me all that much. I’ve always spoken and written quite effectively, so the fact that I’m often replacing the ideal word with whichever one I’m able to come up with hasn’t been a big deal. I remember very clearly when I got my Ph.D. in English feeling like, “You know, I have a Ph.D., so if I can’t remember a certain book, that’s by definition a book that it’s okay for a Ph.D. in English to forget.”

Now, however, anytime one of these phenomena happens, I immediately leap to the tumor or the surgery. Immediately. Consistently. Sometimes with a little bit of a jokey edge, but often that’s just trying to cover up the worry. For instance, Eliza was in town last week, and anytime she made reference to a book we read in grad school that I didn't remember, I'd say, “Ack, it’s the brain tumor!”

The fact of the matter is, it might actually be the brain tumor. Because I have a low-grade glioma, very slow growing, I’ve had it for years, and I might well have had it in grad school. Or much, much earlier.  My uncle talked with me about the fact that my brain has been compensating for this tumor but that the tumor has been causing problems, like with verbal memory and verbal processing, among other things, problems that we didn’t recognize as problems because we didn’t know about the tumor. He made a comment about the fact that we have no way of knowing how smart or competent I might have been if I’d never had this tumor.

But another fact of the matter is that these problems haven’t actually been problems. I mean, look at me. I have a career I absolutely love. I get to teach students, work with brilliant colleagues, administer a WGS program, and write books. My latest book (which came out, thank goodness, before the seizures happened) is doing quite well—it’s getting critiqued a little bit on the blogosphere for being too academic, not for being a book written by somebody who obviously had no grasp of the English language. And at another level, it’s pretty clear that the ways my brain has been compensating for the tumor over the years have been very useful, because they seem to be helping me recovery from the surgery.

So, this is my goal now:  to reframe my current pathologizing of my functioning in the world. The fact that I can’t sometimes find exactly the word I want, or that I can’t remember the details of Dorothy Allison’s Cavedweller—it’s much more useful for me to see these as characteristics of myself, quirks, not as symptoms, problems, damage. I don’t need to feel guilty or fucked up or defensive about any of these things. They’re part of the package that got me where I am, and I’m significantly happy where I am.

Not to mention that Eliza and Biffle independently noted that, given that I seem to be the person I’ve always been, my continual tumor-apologizing is getting a bit annoying.

Editor's note:  More on this coming tomorrow.

You may be seeing more of me, plus hair

A few posts ago I noted that blogging wasn't on my priorities list, so I hadn't been doing much of it.  That's still the case in the sense that blogging isn't one of my top priorities, but what has changed has been my energy level.  I have much more energy every day--I feel that I've turned a corner and that I am seriously on the mend.  I don't want to jinx myself and head into an exhaustion spiral, but I feel so much better these days that it's started to give me ideas.  I've been thinking a lot, and I keep coming up with ideas for things I'd like to blog about.  For instance:

• The fact that I've discovered I love being the person who gets up in the morning with Maybelle
• Reflections on Dr. Friedman as we approach (a week from today) my follow up visit with him
• My thoughts on niceness
• My language use pre and post surgery
• Hair

As for this last bullet point, I'll go ahead and give you a version of it here.  CofC NOW is putting together a Look Book in which folks on campus reflect on their bodies, and I submitted the page below.  I have more to say than this, because I can be--as you know--quite wordy, but they asked that all contributors be concise.  Click on the image if you need bigger versions of the fetching photos of me (thanks, Biffle!)

Girl with Pen

Check out the awesome guest column Eliza wrote over at Girl with Pen.

Food

A while back I mentioned the fact that I'm great at putting on the brave face.  I haven't been doing that so much here, because the news really is good, but I realized this morning that I have been giving the blog readers a perhaps overly positive sense of what life is like for me.  So, to balance things out, here is a bit of a bummer:  my relationship with food.

In the past week, for reasons that are probably temporary and apparently nothing to worry about, my appetite has tanked.  As those of you who know me are well aware of, I love food.  I don't necessarily love good food--I'm someone who can (and has!) eaten cold cereal three meals a day with much delight--but I love to eat.  Particularly breads of any kind.  Biffle and I used to go to an Italian restaurant in Nashville where, every single visit, I would eat so much bread and olive oil before the food came that I could hardly eat any of my meal. 

So it is new territory for me to be not hungry.  I'm supposed to be eating well right now.  My mom, Biffle, and Andrew Weil (whose food pyramid is on our fridge) want me to be eating lots of fruits and veggies, whole grains, soy, and flax oil.  Eliza, who'll be here tomorrow, and Biffle want me to be eating loads and loads of protein.  It's probably a good thing that friends and colleagues have stopped delivering meals, because what I find I want at this point is a way to get the fruits, veggies, flax, and meat packaged into a cold, vaguely flavorless shake which I can ingest multiple times a day.  Collard green-roast beef-soy milk smoothie!  Yum!

I'm having to eat pretty often.  If I don't have something to eat every couple of hours, my energy will disappear.  So I walk into the kitchen and just look around.  Open the fridge, open the cabinets, sigh.  And then I pick something at random and eat it very slowly.  It's a little pathetic and probably not all that fun to live with.

Last night Biffle asked if I wanted anything for dessert.  For my entire life--really--this is not a question that even needed to be asked because the answer was always yes.  But now the answer is no.

Nothing to worry about, but just wanted to share another side of life as/with a brain surgery patient.

One month

Four weeks ago I had my brain surgery.

This seems both too long and not long enough, because my completely odd schedule these days has given me a weird sense of time.  I'm normally--since, what, age 5?--attuned to the academic schedule, yet I was surprised to learn that it was midterm time, and spring break.  This weird sense of time has affected others who live with me, too.  Two days ago Biffle packed up all his musical gear and drove thirty minutes, in a green shirt, for a St. Patrick's Day gig.  Neither he nor I, nor my mom who was living with us, realized that it was March 10 that day.

My priorities these days are

1. Spending time with Maybelle and my family (there will be some new videos soon to document Maybelle's increasing cuteness)
2. Sleeping--something I'm apparently not doing as much as various medical professionals thought I would be.  But they're not upset about this--pushing myself is endorsed by neurosurgeons.  Let me assure blog readers, though, that I'm sleeping far more than I ever have since infancy, and it continues to make me uneasy.
3. Eating:  this has been made easier by the weeks of meals brought to our house by many wonderful friends and colleagues.  We had an amazing range of things, from pork risotto to cod chowder, from chicken curry to pad thai.  Such good food.  We managed to freeze some of the leftovers and are still eating them.

I'm very glad to have made it a month this well.  Much of this was made possible by my mom, who has been with us since the day before the surgery and just left today to go home to Tennessee.  She's been the person sleeping in the room with Maybelle and getting up with her in the morning, doing all our laundry and dishes, and she made quite a few of the meals for us after the food stopped appearing magically on our porch in the evening.  And she hasn't been one bit resentful of all this labor--she's actually been cheerful!  Let's hope for Maybelle's sake that I can be the same way if I need to be in the future.

Unfortunately, as you may have noticed from my list above, blogging hasn't become one of my top priorities.  I keep having things I want to write about--my visit to the speech language pathologist, for instance, or my thoughts on my hair, or the Dilantin blood checks I keep having--but the other three big things take up much of the day.  Some folks have requested more blogging, and have even offered topics they'd like to hear about (like my thoughts about the playing of "I Am Woman, Hear Me Roar" when Kathryn Bigelow came to the stage to get the Oscar for Best Picture), and I want to assure you that I would love to blog more!  Let's hope that a little more time frees up soon.

The life of the mind

Today I read seven pages of a piece of academic writing that a dear friend of mine is working on.  This is the first academic writing I've read since my brain surgery, and I asked to see it just to see what it was like for me--could I understand it?

It required some concentration, but I did seem to understand it, and I had a couple of comments for her.  I wasn't sure if my conception of her idea was legitimate, and I warned her, "I may have completely misunderstood what you wrote, but if I did, I'm not sure if you should tell me directly..."  She wrote back that I had gotten the point.  Now, she's a dear friend, so this kind of nice comment doesn't necessarily mean that I actually got the point.  But she followed up by asking me two additional questions.

Two additional questions!

There's no reason you'd ask two additional questions unless the person you were asking had a potentially useful thing or two to say.  So, to me, this was a huge success.  Seven pages, and I was exhausted afterward, but it means that my academic brain is still there, still operational.

Sleeping

One of the challenging things about my healing is that my mind and body seem to be working at different rates. And not what I would have expected: my mind often seems to be going at its normal speed. Friedman had always said that my comprehension wouldn’t be affected, so perhaps this is what he meant. I'll get exhausted--just completely exhausted--and lie down in bed, my eyes closed, my body completely still. It looks like I'm asleep. Biffle and my mom have walked in or by and seen me and assumed I was asleep. But my mind is racing along. I'm making plans, big things and little things I'd like to do. I plan things as simple as a box of baby things for a dear friend's baby, or things like what I want to journal or blog about. I think about people I want to connect to, or gifts someone deserves. I'm reading books at a fairly good pace, and there was one I really wanted to write a mixed review about for the blog, and I knew almost exactly what I wanted to say. But actually having the energy to sit at the computer and write is something else and happens much more rarely.

Part of this is because playing with Maybelle has become my top priority. I wrote somebody recently and said, "I'm feeling as anxious about being around Maybelle as I was before the surgery. But without the anxiety." That’s about right. I was so fearful before the surgery--it was the stuff I wrote about in my blog post about keeping all my ducks in a row. Now my feelings are much more settled, since the surgery went well and I'm just healing. I'm sure Biffle would emphasize that I'm still anxious, and of course I am, because they promised that my personality wouldn't change, and I'm a person who operates at a more anxious level than lots of folks. But the point is that I find that I really just want to be with Maybelle, to watch her and play with her. There's still stuff I can't always do with her, but every day I seem to be able to do a tiny bit more and a tiny bit more.

By the end of her day, after I've been part of her bedtime routine (which is quite lovely), I am worn out. It was at one of these post-Maybelle times of the day that Biffle took the picture of me sleeping on Benya--although, to get me back to my point, I wasn't actually asleep then. I might as well have been asleep because of what my body was doing, but I was lying there completely still thinking thinking thinking. It's as if my brain is still getting ducks in a row. I'm not actually thinking about work quite as much as you might expect, so that's good news. But I am thinking about work in the larger sense: what do I have to say? Who do I have to connect to? What are the next plans for me, personally and professionally?

Maybelle's at Olive's house right now, so I have a little time after my midday nap (my little three or four hour midday nap) to write. I might post this on the blog later, because that I'm usually able to do in the evening. But even something as simple as responding to emails is pretty tough at the end of the day. I usually read emails at least once a day, but it often takes me much, much longer to reply. Sometimes I don't at all.