2.13.2010

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.



15 comments:

Abi said...

Thanks so much for the continued updates, Walter. You do a great job describing everything. Thinking continuously of you guys.

Sarah M. said...

I am amazed you are able to update us with all the stress, visitors and exhaustion - and am glad to know what is up.

I can relate to your dilemma in not being able to reach out to others because you are consumed by your loved one's condition.

Our newborn son was in the NICU a month ago - a few days before the Haiti earthquake. I am usually very concerned about our world and am donating money to help the victims - but found myself shutting down. It was too much to ache for my son and ache for a country.

The other babies had so many more needs than James. He was born full term - not like the 28 week old. Plus we only had one to worry about - unlike the parents of the twins next door. However - he was our baby, and he choked and stopped breathing. We were scared.

Regardless - please take care of yourself and let others remind you to eat and sleep. After all - you have an amazing wife and great kid who are relying on you.

Hugs.

Ann said...

i love this :) sounds just like Alison :) and i'm so happy to hear all this great sounding news too! thinking of you all a lot....

xoAnn

Quiche said...

Grateful and relieved that she is doing well in her own terms, which you would know far more intimately than anyone else, and really Walt, that is all that matters. As you had expressed, she had evidently adapted to the glioma, odds are from birth, and that extraordinary, highly adaptable brain of hers will "overcome and adapt" yet again in the glioma's absence.

An infinitude of good vibes, love, comfort, belief, healing and wellness are being sent to Alison, you and Maybelle, and toward other folks in their grief and pain, and it has a profoundly powerful, transforming affect, whether the recipients are consciously aware of it or not....much of life and love is a collective group effort (:

Julie said...

We who are checking the blog regularly are grateful to you, and soooo happy to hear the continuously-better news about Alison!

The ICU is such a strange place...I experienced something similar when my dad had open heart surgery last year. I actually found it a comforting distraction to hear about other people's situations. My mom works at the hospital we were at, so she was nervously chatting with everyone. I could only listen, but somehow thinking of others, even in the tiniest way, made me feel better.

Please take care of yourself as much as you can. We haven't stopped thinking of you and your family.

Jill said...

Thanks for letting us know that Alison's surgery is behind her. What a relief. Sounds like there is no shortage of word meisters in the family so you can just crank them out at twice your usual pace, Walter, until Alison is back on her ... tongue?
Much love,
Jill (the matzo ball soup maker)

Taylor said...

Walter, thanks for the updates! Let me know if you, Alison, or her family need anything. I'm just 10 minutes away.

Valerie said...

I'm also amazed you are able to update us with all this and I appreciate it ever so much. Just know that someone else in Cookie-ville is thinking good thoughts for you.

Lorelei said...

I can totally relate, Walter. Walking through the ICU today to see Jay's mom I caught glimses of the other people there. Even one old man in his room by himself who smiled hopefully at me, maybe hoping we were there to visit him or at least talk to him.

Peter Felten said...

Walter,
I echo the many thanks for your updates. I'm sure all of us want to be more active in helping all of you, but due to a lack of medical training are unable to. I'm glad that I was able to provide some food and a small distraction in a very stressful time.

I know what you mean about the other folks in the waiting room. There were so many, each with their own troubles. I really wanted to bring enough food for all of them.

Please let us know if you need anything else.

Sara W.

Nikki Hardin said...

beautiful post and good news!

Elizabeth W. said...

It says a lot about your thinking of others. I am so glad that Alison is improving. I think that all the positive thoughts do help others. My cousin has stage IV Glioblastoma and yet he is still alive after 3 years which defies all the statistics. His wife has devoted herself to his recovery in a way that is hard to comprehend. I am convinced that without her positive force, he would have been another statistic.

Erna said...

Alison, Its Erna. We received word that that surgery went well and are you are doing well in recovery. The group wanted to send you a little gift. Where can we send? my email address is
misserna5@gmail.com. We are thinking of you and you are in our prayers.

Totally0Random said...

Walter, thanks so much for all the details along the way. *hugs*
-- Mel & Arthur

Stephanie Hunt said...

Walter, incredible post -- wrapping a happy Alison update into a lovely, probing musing on the world around you. Hospitals have a funky way of reminding us that yes, everyone has a story, and that it seldom has much to do with vital signs or diagnoses. Pulling for you, and proud of you both.