Luscious

We've been talking a lot about me lately, for good reason.  But I just wanted to remind all our readers that there's somebody else luscious around here who has been

1. Learning new words (she's up to about 17)
2. Crawling the full length of our house, on her own
3. Taking two unassisted steps, and then was outraged--kids with Down syndrome have to develop motor plans, which can take a little while.  But she is putting together the gross motor skills required for walking, no doubts.

Update from the woman with a hole in her head

In the few minutes of evening time I have available to me before my energy level completely disappears, I wanted to share a bit with you all about how I'm going.  The answer is, really, really well, as it turns out.

Biffle blogged a lot about the surgery process itself—the seizure that led into the surgery and the later one that meant they needed to call the surgery quits, how very sleepy I was in the days following. I was supposed to be able to remember the surgery itself quite clearly—Friedman and Joel Barton* both said so, but it may have been the seizures that somehow interfered in that process. I do remember bits of the surgery, with Friedman's physician's assistant and Joel Barton peering at me through a blue surgical tent, the PA showing me children’s playing cards and getting me to identify various pictures (bunnies, cats, whatever), but I don’t remember actually making small talk. In fact, what I remember most is being fairly uncomfortable (Joel said this would be the case) and continuing to try to fade out, with the PA aggressively trying to get me to stay conscious. Was this seizures or a result of them having had to give me more relaxing drugs or something? Who knows. At any rate, I wasn’t the cool patient reading Vonnegut in the surgery, and I don’t remember making any fun quips or anything. I do remember having the thought that Joel was wrong about imagining the blue fabric as like a childhood pillow fort—it was pretty clear that we were in a surgical setting, and I was okay with that fact.

After the surgery, I went straight to the ICU and I guess was fairly well out of it for several hours. According to Biffle, this was a time period that Friedman and Uncle Joe were both giving sort of scrutinous-eyed assessments of me—not saying, “Oh, this is terrible,” but obviously waiting to see what the story was.

And then I woke up, and kept waking up, and kept doing really well with the whole language game. We’re a week and two days past the surgery, and as far as I can tell I’m having very few language problems of any sort.  This seems not to be what any of them expected--certainly not two of the finest neurosurgeons in the country, one of whom operated on my brain, and one of whom is my uncle.**

Friedman took between 60-70% of the tumor out. Uncle Joe pointed out that the tumor they removed was mostly solid tissue; the stuff that they left in was where the tumor cells were fully infiltrating my functional brain cells, and as they got to the end of the solid tumor tissue, I started having seizures, and that’s where they stopped. The pathology report from Duke—one of the best pathology centers in the country, according to Joe—confirms that the tumor is all slow growing, level two, so that’s very good news. In six weeks I’ll go to see Friedman again, and we’ll confirm this whole follow-up process of care I’m going to need to keep having done.

Uncle Joe says to think of it as a “curative process,” and I’m happy to do that. I know I was pretty fixated on my own mortality in the days preceeding this process, but in the days since I’ve been really grateful to still be alive, and grateful that there’s not a lot I’m having to work on right now beyond resting, getting a little exercise, and spending time (for the most part animated, but otherwise quite low-key) with Maybelle. It’ll be interesting to see how my experience of this process changes. I know that being the sick one this time through was easier for me than it’s been for Biffle, and for my whole family; they all basically hung out in the hospital all day, except for coming to see me from time to time in my room. I was so sleepy, and have continued to be recovering, on various drugs, not necessarily in my fully right mind all the time. Meanwhile, Biffle has been anxious anxious anxious, and I know the rest of my family feels the same.  Now that we've been home for a few days, Biffle and my mom are trying to establish some sort of routine.

And I guess I should be honest here and say the same:  although I'm grateful not to have any major tasks ahead of me other than healing, I have to admit that I find the lack of a solid work routine very jarring.  Not to mention that the complete exhaustion remains a bit of an enigma for me.  Biffle has a new standardized facial expression he makes when I ask--again and again, apparently--"Why am I so tired?"  His appearance is clear enough that he no longer has to answer, "Because you had brain surgery nine days ago."  Ah, yes.  That.

*My anesthesiologist—the one who read the blog before he met me, made reference to Baxter Sez and third wave feminism, and just yesterday has made a comment on the blog! Go, Joel!
**While I was recovering from surgery, Friedman moved from being Dr. Mo Mo to being actual Friedman on this blog, which I find a little sad, but what can you do.  The identity of my uncle, however, is still somewhat hidden.  Let me assure you, though, that he's one of the best in the country.  One. Of. The. Best.  That's all I'm saying.

Get-ting Bet-ta All The Ti-i-ime: Removing the Staples After Alison's Surgery

Alison's surgery was last Friday morning. Her staples were due to be taken out 7-10 days later.

Dr. Freidman had given us the removal device before we left North Carolina and suggested we find professional help in taking them out. I told Alison and Dr. Freidman i felt confident i could do the job, but they both scoffed. I mean, i've always taken my own stitches out, and besides, as i said to Alison, haven't you seen what i can do with a chunk of wood?

So, yesterday when we looked it occurred to us those staples really did need to come out. Me and Linus Pauling are both big believers in Vitamin C and i'd been pumping Alison full of it since the beginning of January. Because of this (or, ostensibly because of this, for you skeptics) her skin was quickly healing and growing around them. Alison's nurse practitioner was out sick, and we haven't even visited her local neuro-oncologist. In a moment of validation and vindication of me, Alison's Uncle approved of me being Alison's staple-remover person. After all, he said, it isn't brain surgery.

Here is the video evidence. Warning: Although only mildly graphic, those of you who are squeamish may not want to watch 'cause there's a little bit of blood.

staples from Alison, Walter, and Maybelle on Vimeo.

Too exhausted

Hey, folks--

I am way too tired right now to say anything meaningful to you.  But I did want to write a note thanking you all for the wonderful comments coming my way.  My face is swelling more and more (which is to be expected), and I'm spending little bits of time with Maybelle, interspersed with long periods of naps.  We'll be back in SC around the end of the week, at which time I'll continue to be napping.  A lot.

But at any rate, it's great to hear from you, and in the coming weeks I'll begin to get back to you, too.

Alison's First Public Appearance

Sunday 8 am-ish from Alison, Walter, and Maybelle on Vimeo.

Updating

Noon.

Alison has been moved to a room. She is in the bed, and around it is ranged 1,2,3,4,5 Piepmeiers and a Dinwiddy. Two more Dinwiddies are expected later today. And those Piepmeiers are big, you know? Whew! They're suckin all the oxygen out of the room.

Alison is very awake now and very lucid. Almost no word-finding problems, which is a surprise to me. We were told to expect some, maybe even "a fair amount," but while Alison isn't exactly holding forth about zines and her newest thoughts on her latest book idea concerning disability, it appears that she might be able to do it if prodded.

The tumor, as has been said many times, is a low-grade glioma. Gliomas are evidently a genetic matter, and can be very slow growing. As such, there's no way of knowing how long Alison may have had this thing in her head. It may have been there since birth, maybe 10 years maybe 5. I'm pulling for "since birth" because that would mean it's very slow growing. All that aside, evidence still points to quite a while. That's because the size of the tumor should've already created a lot of language problems--except that Alison has possibly been gradually moving her speech centers around to compensate.

Back last month we had what's called an fMRI. A functional Magnetic Resonance Image. The short version of the explanation for an fMRI is that Alison read words while getting an MRI. In real time, the machine noted what parts of Alison's brain lit up while she was reading. When the technician started to create his color overlay indicating those lit up parts, they were just all over the place. Quite a large bit was in her right hemisphere even. While the technician wouldn't totally commit to saying that these truly were compensations, he allowed for the possibility. I think she moved them, but then i'm given to a lot of wishful thinking, but then maybe "wishing" for someone else's well-being is a kind of unselfish prayer, and unselfish prayers, after all, are the best kind.

Anyway, Alison is evidently doing spectacularly. I think that wasn't the case yesterday. I think the doctors and nurses and even Alison's Uncle Joe were a little underwhelmed. I think they somewhat expected Alison to come out of surgery and be a little more awake, a little more responsive than she was. As is stands today, however, i think they're a little impressed with how much better she's doing than expected. They just didn't know Alison, after all, is a high- maintenance lightweight. Doesn't get her sleep? She ain't worth a plug nickel. One large glass of wine? Nighty-night. 10 billion milligrams of Dilantin, no sleep, stress and having one's head operated on would take it out of the best of them. It wonked Alison a good one. She just needed a little more time than other folks.

Now, while i assure you the future holds quite a few posts bragging on several above-and-beyond friends, i wanted to give a quick shout out to Alison's friend Sarah who drove up yesterday from near Greensboro to bring everyone in the waiting room a fantastic, delicious and healthy lunch. It even came complete with very cute plastic flatware and a table cloth. Because of nerves just about everything i ate yesterday, which i think amounted to perhaps 6 oz., was shoveled into my face only because i knew i was supposed to eat and mostly tasted like sand. That Chicken Tetrazzini, however, was spectacular and a very gracious gift. On behalf of Alison, Kelly, Lee, Suzanne, Trey, Aaron and Mary: Thank you so much, Sarah.

Finally, now that i feel i'm sort of out of the weeds, i'd like to address one more thing. Yesterday as i waited and waited, and was almost entirely consumed, for word that Alison was okay, i was still vaguely aware that there were a lot of strangers around me who were doing the same thing. It was a big waiting room and there were lots of names being called, lots of beepers going off, lots of people with lips just as colorless and pressed just as thin as mine. Experience has taught me that when i'm feeling most self-consumed, that's the time to reach out and help someone else. I pondered going around and actually talking to folks, listening to their story as much as i could, maybe just giving out a smile or two. I wasn't able, however, to overcome my own inertia. I don't feel guilty about that. I'd like to think that i have the karmic equivalent of, say, carbon offset credits, and just cashed in a few yesterday.

Still, i had to pass several rooms several times there in the ICU to get to Alison's. In a really brief way, i became aware of other people's stories. There was the woman all alone who's bed was being mechanically shaken so that fluid wouldn't collect in her lungs. There was a guy of my age and size with a sad and haggard face who sat silently reading in the room where what appeared to be his terminally sleeping Daddy lay crumpled and old. And there was the weeping woman in the waiting room who looked a lot like the woman in the room near Alison's. As i passed by at one point the staff were quietly pointing to a monitor that stood just outside her door. This monitor seemed different than what everyone else had. On it blipped by several lines, most of them very flat. The staff somberly pointed and spoke of flat t-waves having been there too long.

I don't like to see anything or anyone hurt, and while, outside of Alison, it took me all day yesterday to get there, i still eventually found my feelings going out for these folks. Now that so many good vibes have been sent our way and have done so much good (and although i was unable to do it myself) i hope everyone still has some of that left so they can send it to the other folks who need it even worse than we have.

quick update 10:04 pm

We can't be in the ICU after 11 pm. Alison's exhausted so were leaving early and letting her sleep. But, quickly, i just want to mention that as of ten minutes ago, her face isn't as swollen as it was, her color is great, they planning on getting her out of ICU perhaps early tommorrow, and best of all she doesn't appear to be having anything more than the most rudimentary problems with language--an occasional slurred word or misplaced modifier.

Whoo-hoo!

The Short Versions

The shortest version: As of 3:35 p.m., Alison is okay and recovering from surgery.

The short version (the long version will be forthcoming later, i guess): Alison went into surgery this morning at around 7:30. I managed to sleep through a few of the many activities the hospital staff made Alison undergo all night long: extra Dilatin to ward off seizures, steroids to reduce swelling, blood draws, urine tests, temperature, etc. etc. We were woken with finality at around 4:30 a.m. and told to kind of start getting ready for when they came to get her at 6:30.

At about 6:30, when indeed the staff showed up to take Alison to pre-op, she grabbed my arm as she lay on the bed and started doing the swallowing thing she did when she had one the of seizures i witnessed back durning Christmas. She looked scared and kind of lost, but this time she managed to not go into a full-blown seizure. After about twenty seconds of the lost look on her face, she seemed to recover a little bit and i asked her if she'd had a seizure. Groggily, She answered yeah, i shuffleboard! I could smell something and then i grapejuice. Obviously, this wasn't a great start for surgery day. However, i thought at the time--and Dr. Freidman later confirmed--that it was probably stress induced.

At 6:45, roughly, the staff wheeled Alison down to pre-op at which point i had to leave her for a while. I was given a little restaurant beeper thing at the waiting rom and was told they'd call me back in just a few minutes. True to their word, i got to visit with her and her anesthesiologist (mentioned yesterday) and the doctor that would be talking to her throughout the operation. His name was Jay. Nice guy. Everyone at Duke has had an excellent bedside manner and i really appreciate it.

Now: this is what we were expecting to happen this morning: Alison would be taken to surgery. She would be...maybe" sedated", maybe "knocked out" was the phrase they used. At this point Alison's head would be opened up. She would then be woken up and undergo an exhaustive period of "awake brain surgery" for maybe as long as four hours. When her language started to deteriorate, they would stop, knock her back out, put her head back together again and take her to the ICU. True to their word again, that's what happens. Here are a few of the details:

7:00 a.m.: I had to leave Alison and walk out into the vast waiting room alone and as scared as i think i've ever been (and i've been in jail, had several car accidents, had a gun pointed at my face, been threatened with a knife, and have fallen from a cliff). Alison's family showed up a little later and we were all miserable together. I sat and read Live and Let Die, the James Bond novel by Ian Fleming. I wanted escapist literature and it fit the bill. It also, by the way is a tour de force of racism.

About every hour and a half the beeper would go off and we would go find out what was going on, E.g.: 8:30 "they have started the procedure." 10:00 "Alison is awake and talking during the procedure". This went on until the ungodly time of about 1 p.m. when we finally got the call from the waiting room desk that i could go speak to Dr. Freidman.

Here is what he said (paraphrased): 2 1/2 hours of awake time. Alison started having seizures when they started to get deeply into the tumor, so they stopped. Easily over 50% of the tumor was able to be removed, perhaps as much as 60-70%. The real-time pathology report confirms that the tumor is indeed low-grade. Crudely, that means that Alison will most likely be alive in 10 years--85% of low grade glioma patients are. Language should take an average hit--what he expected. Alison is now on two anti-seizure medications and will be for the next few weeks. After that, she'll be taken off the Dilatin and be put on Kepra (sp?). 80% of people respond positively to Kepra, 10% get sleepy, 10% get "mean".

Lord, Lord. Mean Alison?

Okay.

At 2:00 p.m. we got to go visit her. Evidently, directly after she was taken from surgery, the only thing Alison could say was her own last name. By the time i got in there, she was wildly groggy, but, for Dr. Freidman, was able to correctly identify a thumb, a pair of glasses, Maybelle, Me and say that she was uncomfortable. 5 for 5! Freidman looked relieved and said "i think we're gonna be okay."

Alison will be in the ICU all night tonight and perhaps tomorrow. The plan remains the same, though. Hospital room for a night or two after that, a couple of days in the local hotel and then, if all is well, homeward on Thursday.

That's all in got in me folks.

News from backstage

Biffle and I are in the Duke University Hospital tonight.  The good news is that Dr. Mo Mo was upbeat tonight when we met with him--he even said that the tumor looked better to him than he'd originally thought.  Woo hoo!  When he mentioned how much he enjoyed working with his patients and made reference to me and Biffle as his patients, I pulled out a picture of Maybelle so that he'd be aware of the third patient in this family.  He was impressed with her tooth and said, "Corn on the cob."

The bad news is that the weather is so terrible in Connecticut that my uncle the neurosurgeon couldn't come down.  He's made himself 100% available for phone consultations, which is the next best thing, but I'm disappointed that he's not here.  His presence would have brought everybody's anxiety down a notch, I think.

I'd like to give a shout-out to my anesthesiologist, Joel Barton, and I'll mention him by name because he's web-savvy.  During the course of our conversation this evening, he mentioned both Baxter Sez and third wave feminism! When I expressed my amazement, he said modestly, "I like to do my research on my patients."  Damn!

As we were driving to North Carolina yesterday, I asked Biffle how he was doing, and he said, "I'm just ready to get up on stage."  That's how we both feel.  So I'll send out this last blog missive from backstage.  Biffle will blog in the next few days to keep you all updated on our progress, and I hope to be back here very, very soon.

Ducks

The surgery is one week from today.

I'm responding in part by trying to get everything organized now, while I have memory and intellect, while I have predictable energy levels and schedule.  I've made lists:  what we should pack, what our friends should pack for Maybelle when she comes up, what Maybelle's schedule will be while we're gone, the contact information of every person she'll interact with.  I've written down all my usernames and passwords so that Biffle will have them in case I'm out of it.  I've gotten in touch with all of Maybelle's therapists.  I've finished my annual evaluation early, I've put together a panel for the National Women's Studies Association Conference, I've had conversations with the interim director of Women's and Gender Studies and with my dean.  We're shopping this weekend so that the house is well stocked for the friends who are staying with Maybelle.

Biffle pointed out today that this may be the hardest part of the process for me.  I love a task, and at this point, there's not much I can do beyond getting my personal and professional lives ready for my temporary absence.  My therapist observed that I’m going to be experiencing complete dependency on my neurosurgeon—as he put it, my “intelligence and hard work won’t make a bit of difference during the surgery itself.”  So I'm compensating by putting my organizational skills to work wherever I can.  Can't hurt, and it might help.


This is a coping mechanism, of course, because right now--one week away--it's very easy to think about hard things.  Big things.  To worry.  Let's just say I've been thinking about Maybelle a lot.  So instead of letting myself dwell on worst case scenarios and terrible fears that seem far too possible, I'm getting all my ducks in a row.

Because y'all haven't heard from me in a few days

All is well in Brain Tumor Land.  I have no updates from that front but wanted to share a weird encounter we had at the Children's Museum on Sunday.  It was a packed day in the toddler room--kids everywhere.  Maybelle was in a glorious mood, smiling at other kids, trying to steal the rolly ladybug from a little girl, patting her hand in and out of the sunshine to see the shadows.  She did two things she hasn't done before:  crawled through a tunnel (the first time she had to go reeeeeeally slowly, but thereafter she was pretty quick), and voluntarily slid down a slide (again and again and again and again).

The weird encounter:  at one point, a woman turned to Biffle and said, "Don't worry about her size.  When my little one was seven months old, she weighed about 20 pounds.  Then she got taller and didn't gain much weight, so by the time she was two she was normal on the growth charts."

It was a confusing thing to say, and Biffle and I weren't sure how to respond.  Biffle told the woman that Maybelle's actually older than that and is a little small for her age, and then the woman mumbled something incomprehensible and started talking to another mom.  I can see how the woman assumed Maybelle was seven months old, rather than seventeen:  she has only one visible tooth, she doesn't walk yet, and her spoken language is incomprehensible to folks who don't know her.  And yet, it was a bit of a bummer.  I feel sometimes like we should make a little shirt for Maybelle--it would be the companion to the bumper stickers on our cars and would say "I have more chromosomes than you do."  That might at least invite meaningful conversation.

And, because you may not have enough cuteness in your day today, here is the seventeen-month-old herself: