Thursday, December 12, 2013

Two millimeters, or one week, or other ways to measure time and space.


Here is what happens, and how two millimeters:




can matter so much (and so little?)

Here:  you are going into the doctor because you've broken out in hives again, and itch all over and he is taking a look at you and you are saying also you have been a little dizzy.

Here: you write the phrase make a living as a writer but it comes out make a writing as a liver.  Laugh!

Here:  you woke up last night with the chills.  You were cold and you got up and put on a pair of sweatpants. Dress socks because that is all you could find. A longsleeve shirt over your t-shirt. A sweatshirt over that. You realize that this seems a bit much. You get back into bed with your teeth chattering.

Here: who is that character on The League again? It's not Dixon but it's not Dixon but it's not.

Here: the doctor says "Have you hit your head or anything recently?"

Here: No, you say.  You have not hit your head recently.

Here: After a hearing, two clients come up to you.  "I didn't know you would be here," you say, and extend your hand and say "I'm not sure we've met before." They say that they have met you. In your office.

Here: Laugh! Remind them that you are really bad with faces.

Here: "I'm going to send you for a CT scan," the doctor says.

Here: You came here because you had hives, and a fever!

Here: This morning you didn't recognize a woman standing outside your office. You thought you recognized her, but you didn't, really, because as she talked you realized that she was not who you thought she was and then your goal became to either figure out who she was or get out of the conversation without embarrassing yourself.

More:

Two people you had a lengthy meeting with a month ago and now have just re-introduced yourself to, leading to confused stares and nervous laughter.

A long table on which you lie back, being slowly slid headfirst into a circular ring that will only take a minute or so then wait here until the radiologist says it's safe for you to go.

It's safe for you to go.

More:

It's safe for you to go.

Drive home in traffic and think about the field trip the next morning.

It's safe for you to go.

The doctor is on the phone.

It's safe for you to go.

There is a spot on the CT scan.

Probably.

Nothing.

There is a spot on the CT scan it's safe for you to go probably nothing we'll order an MRI I'm going to have an EEG ordered for you it's probably nothing.

When I was little, I had a shirt that read "The Great Brain" on it, in iron-on transfer letters that were mirrored, iridescent.  The shirt referred both to a series of books that I loved as a kid, and to the fact that I felt I, too, had a great brain.

When I was forty-four, I sat in a neurologist's office -- two actually, two different neurologists almost exactly one week apart, two neurologists separated in time by just over 168 hours and in space by just over 200 meters, discussing differences in space and whether they matter, the differences in space being in this case, two millimeters, and whether that difference mattered being primarily important because this was the space in my brain that had moved.

It turns out I have an asymmetrical brain.  Whether that is a good thing or a bad thing or not a thing at all remains to be seen, but it is: My great brain is a brain that doesn't quite look like brains really should.

Here is how my brain differs from other brains, or at least how my brain differs from how other brains think my brain should look.  In a brain -- my brain, your brain, our brains -- we have something called ventricles:


The ventricles are the dark, kidney-shaped areas in the center of the brain, and they hold fluid.  They should be symmetrical, and as you know now, mine are not.

You only learned that about 168 hours after I did!

I learned that in a phone call at 4:37 p.m. last Tuesday, December 5, 2013, when my doctor called to tell me that there was a spot on the CT scan that concerned the radiologist and he would therefore order an MRI and an EEG and we'd figure out what it was, this spot that concerned some radiologist somewhere -- a radiologist who'd looked at my brain two hours earlier and felt it was safe to let me leave the hospital and get in my car and drive home -- we'd get to the bottom of this.

At the time, Mr Bunches and I were sitting at the kitchen table, playing.  Sweetie was upstairs with Mr F, wrestling him into clothes or out of clothes or something, and the doctor spoke quickly and carefully and then put his nurse on the phone with me and she gathered information and the wheels were in motion and I got off the phone and Sweetie asked what they'd said.

"They found a spot on the CT scan that concerns them," I said.

"What does that mean?" Sweetie asked.

But we didn't know what it meant; we had only that information.

The next morning was scheduled for a field trip for the boys, and I was supposed to volunteer on that.  That night, we had been planning on taking a ride with the boys, and maybe hanging out.  I was going to read a book I'd bought. We probably would have watched The Office on Netflix.

When someone says something as vaguely disturbing as there is a spot on the CT scan that concerns, it is hard to decide what to do next.

What to do, ever.

I wanted to run in every direction.  I wanted to go lie down.  I wanted to rewind to the phone call and let it go to voice mail like I usually do.  I wanted to hug someone.

Instead, we took a ride.  We got into the car, buckled the boys in, Sweetie drove, and we went for a ride around the route we think of as Mr F's route.

We stopped at McDonald's, and the boys got fries and a "Coke Soda," and after a moment's thought, I got a vanilla shake, asking for it with no whipped cream but still with the cherry.  I didn't get the cherry.

I went to bed that night and then got back up after an hour and then went to bed after spending another hour reading, reading and reading and reading about what might be the problem, looking at google image after google image of CT scans to try to think what might be wrong with mine; at that point I didn't know about the asymmetry or about anything, I didn't know ventricles or anything. I just knew there was a spot.

When I did find out about the asymmetry, I found out about it this way:  the ventricles that I have do not match, aren't even really close, aren't what you'd expect, and, the neurologist added, for good measure, my left frontal lobe also had some concerns, with the gray matter.

You may not know what gray matter is.  I do, now. I know because I've spent hours reading about it and about every single medical term that came up in the past week, as if I could figure out what was going on and head it off at the pass by becoming a neurologist in 7 days.

Gray matter is the stuff that surrounds the white matter in your brain.  White matter is the stuff that thinks. Gray matter is the stuff that protects the stuff that thinks.  And in my case, the gray matter on my left frontal lobe was thicker than on the right side.

Another asymmetry!

Here's another thing that first neurologist pointed out to me:  Here's another thing! It happens that I had an MRI done a year and a half ago, and it so happens that if you looked at that MRI and this new CT scan, it so happens that this asymmetry, this spot, had moved.

Two millimeters.

Which is not very far!

But still, in an ideal world -- in a world where things are not the way they are but where they instead embody the essence of the perfect concept of that thing -- in an ideal world an ideal brain would ideally match up and not be moving around.

So: more tests but not right away because it's not that urgent and so go on home, we'll schedule the next tests someone will call you, and don't worry it's probably nothing.

Which is great!  It's probably nothing.

For the past three months, I had been having headaches -- more or less continuously, headaches that started in the morning and didn't ever let up.

For at least part of that time, I'd been getting dizzy from time to time, a feeling like maybe I was going to fall or something.

I hadn't thought much about those.  After all, during that time, I'd also had bronchitis and of course I work pretty hard and there's the longstanding heart troubles and all that, so I'd never really worried about them.



For the past month or so, I'd had more worrying events: I'd lose the track of conversations from time to time.  I'd have to tell people "Wait, can you start over?"  But what do you expect? I'm usually distracted and have a lot going on! Emails, and phone calls and the twins and a guy at our office quit and all.

I'd have trouble remembering little things: names. Whether I'd put something in a file.  Whether I'd already said something in a conversation.  On a few occasions I'd caught myself saying "Did I already tell you that..." but more often I figured I'd not bring it up.  But I might do twenty, thirty different things in a day! I get 100+ emails a day! I have meetings and constant interruptions!

And of course, the faces I couldn't remember -- increasingly couldn't remember at all, had no recollection of them.

And none of that bothered me.  As Sweetie and The Boy said one day "You're so scatterbrained!"

Ha ha I am!

I didn't think anything of it honestly until the doctor began asking me those questions when I'd just gone there because I'd had another allergic reaction to something or other and had hives again and needed to check with him, and then it went from hey, I need something for these hives to there's a spot on your CT scan to me this morning lying on my back as they hitch that little cage around your face to wheel you into the giant box full of magnets that is going to somehow take pictures of your mind, after they ask you a disturbing number of questions that make you wonder if maybe you didn't have some metal implanted sometime because they've asked you so many times it seems like it must have happened.

And then they send you home again and in the past, when I've had this test, that test, the other test, everything ever it always came out negative, they always called up and said oh well nothing showed up but like finding the love of your life, everything is a miss until it's a hit, and so this time driving home and talking to Sweetie and saying I'm sure it's (probably) nothing and they never find anything it's always a false alarm remember my heart? but my heart wasn't in it and hers wasn't either and we both jumped when the phone rang, a few hours later, and they were just scheduling a follow up with the other neurologist who came highly recommended and who could see me this afternoon.

When your brain might be injured you don't know what to think or feel or report and so telling a neurologist what's been going on leads you to bring up things you're pretty sure don't matter and leads him to ask you things that you never thought to bring up, like

Do you ever smell anything strange?

And you say that yeah sometimes you smell burning plastic and there was this time that you were pretty sure you smelled smoke downstairs and you didn't want to tell your wife so you just got her down there and said "Do you smell anything?" but she didn't, and the time that you told her you smelled something awful and she didn't smell it but thought maybe it was your coffee, you say that and think oh man how bad is this?

(The answer being one you know [it's 2 millimeters bad] and the one you don't [we don't know]).

And for a week I'd been looking up things and reading academic papers and studies and trying to figure out anything that it could be and everything that it could be, that could answer that second question, the larger question, the question that is exactly two millimeters wide:

Why?

("There could be 101 different things," said my doctor, wisely, by email.  "Let the neurologist work on it," he said, equally wisely.  But I couldn't because everything else that I wanted to do in the past week seemed simultaneously silly and incredibly important.  How could I waste time reading a webcomic? What if I had no time?  I should be talking to Sweetie or playing with the boys?  I need to get into work to take my mind off of this.  Why should I be at work?  I wonder if I should do my Xmas shopping now or wait? And so on.  There could be 101 different things wrong with my brain? I was going to learn them all.)

(And in between, I was going to spend more time with my family, and also not be crabby, and not waste time on websites reading about the NFL, and at the same time I was not going to assume the worst and certainly was not going to, on a drive with Mr F late at night find tears in my eyes as we listen to Everybody Here Is A Cloud.)

(I wasn't going to do that latter because it was probably nothing).

So I learned about eosinophils (blood cells that are associated with hives but also which can be produced by brain disorders including brain tumors) because I had a high eosinophil count and I learned about what the ventricles do and how various impingements on various parts of the brain can express themselves and I checked into all the other lab test results and tried to determine if they meant something was wrong with my brain too and over and over and over I looked at CT scan after CT scan image online to see if they looked like the one I'd been shown and if so what the website said about that and if not why not?

And that led to today, where I had the MRI and the magnets read my brain and then the doctors read the MRI and agreed that yeah it's moved two millimeters, and they don't know why.

They agree on some things.

They agree that there are areas of my brain that cause some concern:

The asymmetry.  They agree that is a thing.

They agree, too, that there are things called "punctate lesions" which if you look it up like I instantaneously did you will learn means small white-matter lesions in your brain the significance of which is poorly understood, at best. A year and a half ago, I had one. Now I have... some.

Beyond that, they agree on nothing, because they haven't come up with any conclusions yet.

They don't know.

That is what the neurologist told me today.

He doesn't know why the headaches and the rest.

Maybe it's nothing, maybe it's not.

We should follow it, he said, pointing to the computer screen where we'd been looking at the inside of my head in the darkened office.  And we'll do some other testing to nail down what's going on, things that are more subtle than can you remember this list of words, and can you touch your nose, and we'll follow it.  Doctors don't watch things, they follow them, trailing behind at a safe distance, probably more than two millimeters.

I don't get to follow it.  I have to lead it, to be ahead of it, to know what's going to happen and what might happen and what can't happen.

The past week, I spent a lot of time sitting up at night, and watching TV at 2 a.m., and pausing to look out the window when I was at work.   I also spent time helping some first graders understand electromagnetic energy, and took Mr F and Mr Bunches sledding, and joked with The Boy about how we looked like a superhero team in the matching sweatshirts we got for an early Christmas present.

And I kept careful track of when I felt dizzy and whether I could remember words and made sure to mark things on the calendar and make notes, and I stared into mirrors a lot, trying to see if there was anything different about me that I could see.



Every few years, it seems, I get a reminder that everything is measured.  Everything.  The distance we travel and the time we spend doing it: measured out.  And even though I never forget it, each time helps me remember why it's so important to focus on what's so important.

On Sunday, it snowed.  I had been sitting on the couch, in our house, sort of half-asleep.  I had been kind of reading something or other, not really anything at all.  The boys were upstairs watching TV.  Sweetie was reading a book.  The snow swirled and blew and came down for an hour or two and I began watching it.

In my mind were thoughts that were like the snowflakes themselves: hard to grasp, icy, cold, and whirled with an energy that I couldn't really comprehend.  Each of the thoughts individually didn't amount to very much, but together they had led me to a dull, insensate kind of feeling, a half-sleep.

I stood up, and said that I was going to shovel the driveway.  I got the boys dressed, put on their snowpants and gloves and hats, and got myself dressed, too, putting plastic bags around my socks before putting on my shoes.  I don't have boots.

We went outside, and I shoveled the driveway and walk pretty quickly.  It was light snow, easy to shovel and blowing around.

Mr Bunches was playing on the edges of the driveway, throwing snow and clambering around.  But Mr F wanted to sled, and he pulled his sled out and tried to go down the driveway.  It didn't work.  The snow wasn't the right kind to sled, and he wouldn't slide easily.

I put him in the sled and put the sled in the road.  Then I pulled on the rope and pulled him down the hill, going faster and faster until we got to the bottom of the road.  I had him stand up and we walked back up the hill, and did it again.  Then again.  Then again.

Up and down the hill, me pulling him down and us walking up together, we went in the snow until it got dark out and his cheeks were apple-red with cold and we could barely see, after we went inside.

I didn't know that day, and I still don't know, now, what actually is going on with me.  But when you are running down a hill towing a laughing little boy in a sled, the snow whipping into your face and Christmas lights a blur around you, when you skid to a stop and he rolls onto his side laughing and smiles up at you, that's when you realize that you never really know what is actually going on with you, and so you'd best just keep running down that hill and walking back up it.

I'm luckier than most.  Most people don't keep getting reminded that there will be a time they can't run down that hill anymore, and so they don't do it as often as they can.

You can measure life a lot of ways.  You can measure it by the tiny increments of space in your brain, or by the long hours of the night when you stare at a computer screen in a darkened dining room while everyone else is asleep, or by the flights of stairs up to the rooms where they keep the big magnets that see inside you behind locked doors.  You can measure life by counting blood cells or the spacing of your brain waves or by the number of degrees on the wall opposite you as you sit and wait to see what your blood pressure is.

Or you can measure life by how far the sled skidded when you let it go.  By how tall that tower of blocks was before it fell, by how many Batmans it takes to finally capture the Joker.  You can see how long your vanilla shake lasts you on the car ride and how many songs you and your wife agree are pretty good on your playlist.  You can measure it by how long it takes for your wife's hand to slacken its grip as she falls asleep next to you.

You can, that is, fit a lot of living into two millimeters. Enough, in fact, that you won't have time to stop to measure it and anyway, if you do, it'll measure up just fine.





8 comments:

Pat Dilloway said...

Man that sounds rough. I hope they can figure out what it is soon and find a way to fix it. The Blogoverse is a poorer place without you for sure.

Andrew Leon said...

I don't really know how to respond to this, right now. Sometimes, I hate words and the need for them, for they are so small and meaningless. Sometimes.

And what you said at the end is so so true, and it makes it even more difficult to respond to all of the rest.

Michael Offutt, Phantom Reader said...

You are in my thoughts.

Briane P said...

Thanks, guys.

It's really not so bad. The news could've been much much worse after the MRI.

What I need is Dr. House.

Rusty Carl said...

Well, if it matters, I do feel quite worried. Don't think worrying has an proven efficacy, but if it does, I've got you covered.

Here's hoping that they just haven't cleaned that smudge off their CT and MRI machines... and your headaches are related to your laundry detergent.

Briane P said...

That's probably it, Rusty.

I should've been more suspicious when they kept shaking the scanner and redrawing it with these little knobs.

Andrew Leon said...

Did any of them ask for chewing gum or duct tape?

(It's good to see that you haven't lost your sense of humor.)

Liz A. said...

Yikes. You're in my thoughts. In a good way.

Oh, and stay off the internet. All the possibilities will just make you crazy. If they haven't already.