Friday, January 31, 2014

Best news possible. And best doc ever. Trust me, it's worth the read.

Uh, okay, wow.

This is going to be a long one. There's really no way to break it up. In the live version, you've probably likely seen it already on the ol' Book of Faces. Let me start with the bottom line: Sylvia is easily beatable, came in as being the absolute best diagnosis possible.

The story.

After an anxiety-filled night Wednesday, and all those questions swimming in my head, we woke up Thursday to a new day. Laura took the Tedster into daycare, and I got up and got ready for the day. I prepped some boxes for UPS, had breakfast, and got dressed. In retrospect, I kinda wish I'd taken a picture of that alone. It might sound trite, or overly dramatic to some, but I put on my uniform.

If I'm going to Walter Reed, I'm wearing my damn Coast Guard uniform. I am one of "those people" who's actually really into it. I love my job. I love my branch. They do a damned fine job of taking care of me, and I have pride in being a Coastie. So even though I could have just worn jeans and a hoodie, no. I chose to put on my full ODUs. So that anyone walking around Walter Reed doesn't see just another of thousands of anonymous patients - they see a Coast Guardsman.

Anyway, wore the uniform.

We went in super early. There're other things to be done. Walter Reed also just happens to be where Laura is having her OB care, and she was due for her gestational diabetes test. Which takes about an hour. She has to drink a bottle of this stupid syrupy sweet stuff, and an hour later they do a blood draw to see how her body is reacting to it. So she got the "lemonade flavor," which, according to her, tasted like flat Sprite syrup. And then she sat for an hour.

I made use of the time to actually go and FIND the neurosurgery clinic. Oh, and since SHE got to eat something nice and sweet, I hit Dunkin' Donuts so I could get something nice and sweet. Apparently, it's not the same thing to her.
Boy that's an unflattering photo.

Blood draw complete, we went and had lunch, and then back over to the neuro clinic.

We were led back to an exam room, sat down, and waited. And you know how you find the stupidest things while you're waiting in the doctor's office? The clock was off.

Little $4 analog clock hanging on the wall, showed a time of 9:30. After 2 minutes it drove us both so nuts Laura fixed it, and reset it to 11:58. And then we waited. And waited.

And waited.

All the time the nerves are building. "It's probably his lunch time." "Why's it so urgent we had to come in on his lunch?" Etc.

Around 12:20 the computer in the office blinked on, and said the doc had logged in. I knew what that meant. It meant he was on the way. He just remoted in to that desktop. 2 minutes later, there he was.

So, a wound check! Asked a couple of questions, looked at the sutures. Snipped one of them. And we're done, right?

Nope. Time to talk Sylvia. And this is the one and only time where he kinda screwed up the "how to talk to patients" part, because he led off with this: "So we're waiting on the final pathology to come back, but we're fairly certain we know what it is. Our fellowship-trained neuropathologist has signed off on the report, but your tumor is of a type so exceedingly rare that we wanted to send it off to the Joint Pathology Center just to get them to concur."

"So exceedingly rare" scares the shit out of patients. Because "so exceedingly rare" means very few people have very little experience treating it. It means there may not be established protocols for how to deal with it. It means that everything you're doing is a total crapshoot and I just became a guinea pig. It means...God, it just means everything...

And then, he gives me the name. Sylvia is: A central neurocytoma.

And this is good.

Rare, yes. But this is the one time you roll the dice and rare is a good thing. She's basically the most benign, boring, basic, lump my brain could possibly produce. I guess, typically, when something does go wrong and you get the diagnosis "brain tumor" it's usually something more aggressive and malignant and dangerous. She is so rare because she is so stupid.

Let's take a moment to reflect on how rare she is. Of all diagnosed brain tumors, a central neurocytoma occurs in 0.5% of them. Now, OF THOSE, only approximately 3% occur entirely in the 3rd ventricular space, where Sylvia is. I'm a stats guy, so let's look at this for a second. According to the American Brain Tumor Association, 69,720 people will get diagnosed with a brain tumor this year. So, 0.5% means that ~350 people will have a central neurocytoma. Of us 350 people, 10 of us will have it in our 3rd ventricular space.

So we continued to talk. Doc asked us if we'd seen the images yet, which was a "no." He was a little surprised, and quickly pulled up the MRI. I wanted to ask him the size - the "layman's terms" size. What are we dealing with?

Well, she's about the size of a grape. 2.5cm x 1cm. As noted before, she's blocking the drainage to the basal cisterns, so that's how we found her. There's no real rhyme or reason from whence she came - she's likely been there for years, growing slowly, until finally becoming symptomatic. Could be genetic, could be cell phones. It is *NOT* the head of the little Lego man that got jammed up my nose when I was 5.

So we're sitting there, talking about Sylvia (I told him the name) and the treatment. Basically, we go in and cut her out. But this is the moment...I mean, swear to God, I hope you all read this far, because this is THE moment - where I *KNEW* I had the right doctor working on me.

Because as we're discussing brain surgery, I glanced back at the monitor, and couldn't help but laugh. I mean, seriously, I laughed out loud. I lol'd. And I interrupted the doctor. And I said, "Sorry, just looking at the screen, and I realized my brain looks like a big goofy smiley face right now."

And what happens next is epic. Doc looks at it, laughs, and says, "Yeah, I see it. It's even got dimples. Okay, so Sylvia is that booger on the right side of the nose, and I've got to pick that booger."

LADIES AND GENTLEMEN. MY DOCTOR CALLED MY BRAIN TUMOR A BOOGER, AND SAID HE'S GOING TO PICK IT. BEST. NEUROSURGEON. EVER!!!!!!!!

He even encouraged me to take a picture of it. I should have taken multiple since the one I got is a little blurry. But here, meet Sylvia. (If you see the smiley face, she is the darkish mass on the right of the "nose.")

Goofy-assed looking brain. Guess we know it's mine.

3 comments:

  1. Love seeing that sense of humor coming through right now! Thanks for sharing!

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  2. Ben, this is SO cool! Your attitude is super. Your surgeon sounds like just the guy you need. All the pieces are coming together for a successful conclusion. Hang in there, dude!

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  3. Boogers gotta go! But yeah, starting off telling someone that what they're scared about is so rare...yikes. And...hopefully Laura gave you proper hell for eating that in front of her :)

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