Been a few days, I know.
My intention with this blog is to inform and, to a degree, entertain potential readers about what it’s like to go through an aortic dissection at a young age, and share my experiences recovering from it. It’s also a place for me to write through so many of the emotions I’m dealing with.
For the most part, my recovery has gone surprisingly smoothly. The doctors keep saying how happy they are and how surprised they are by how quickly I’m progressing. After a while, I feel almost guilty, as though I should be intentionally slowing things down or something.
The latest medical updates came from my surgeon, Dr. V, at UPenn on Monday. The second came from my vascular surgeon on Wednesday.
I fully admit, I wasn’t sure how I’d respond to going back to UPenn. I had a checkup a few weeks prior at a local cardiologist’s office, and once they hooked up the EKG leads and I heard monitors beeping, I sorta had some flashbacks. My fiancee had to remind me to unclench the fist I had made around the table’s lip. It was not a pleasant experience.
Don’t get me wrong, I didn’t exactly love doctors offices or hospitals before. I was always afraid they’d find something really wrong with me.
So I was kinda relieved when I made it to Dr. V’s office without hyperventilating or Hulking out or, you know, having my heart decide to pull some more dramatics. His verdict was that my sternum looked great, the lungs were clear, the area of the aorta they’d repaired was holding and I was looking sharp. He stressed I needed to let the healing occur and that I could not could not COULD NOT skip taking my meds.
The best news though? I was cleared to drive again.
Documentary footage of me shortly after this clearance:
Actually I fully admit I was a little nervous to get behind the wheel again. But when I did, it was like riding a bike. A multi-ton bike that is in desperate need of an oil change after sitting for a month, but…look, it has wheels and it gets me around, okay? Just run with the metaphor. Jeez.
The Wednesday appointment…well, it contained a twist on the barely-days-old new status quo. And that came in the form of the latest scans of my heart. I was shown the Dacron graft they used to repair my poor damaged aorta. I was also shown where the lower aortic dissection had occurred. Then I was shown a tiny black line that seemed about as wide as an eyelash on the screen. Thing is, it’s never good when doctors point out something like that.
Apparently, I’ve got a THIRD tear in my aorta. That’s right, ladies and gents, my body is not content with handling two life-threatening fissures in that poor, overworked heart. Nope. Apparently I’ve got a third small fissure located near an artery that goes to my liver. So drinking at my upcoming wedding could get VERY interesting really fast.
Now, the vascular doc said it’s not looking like something requiring immediate surgery, but hey, you want to know what’s fun? Trying to sleep with the knowledge your heart has already tried to pop like a balloon twice and could try again whenever might seem most whimsical.
Play it again, Han.
The good(?) news is that I was officially told that I may be able to help out science through some genetic counseling. Apparently that’s a fancy term for ‘let’s poke Scott with a needle and see what makes him tick’. Through blood analysis, there’s a chance to learn what caused my chromosomes to suddenly go wonky. Marfan’s Syndrome, which is a connective tissue disorder that causes some features to become elongated, isn’t really a likely diagnosis. I’m stocky and slightly above average height, while people with Marfan’s Syndrome tend to be tall, skinny, with long fingers, toes and arms. Not really my build.
But this is a blog that is as much about my love of movies as it is my recent life-changing event. Anyone ever see Erin Brokovich?
Turns out my dear hometown neighborhood of Toms River, NJ has this unfortunate history with toxic chemicals accidentally leaking (oops!) into the water table for decades. Yep. Toms River water was just as bad for you as the stuff Erin was dealing with in the in the movie. In addition to cancer, the chemicals are also notorious for causing a variety of fun genetic mutations. Sadly, they don’t include the ability to fly or develop super hearing or let me do whatever a spider can.
What they can do is give you tumors. Acromegaly. Cancer. My father, a lifelong native of Toms River, had plenty of time to drink, swim, bathe and generally live amid the amazingly barely-legal, mostly criminal crap. Obviously science caught up with the company responsible for the dumping and there were lawsuits. It hasn’t had the happy ending Erin Brokovich gave us. It probably never will, as the world seems to refuse to acknowledge we have a cancer problem in town. But if you want to learn more about that, I highly recommend the Pulitzer Prize winning-book Toms River: A Story of Science and Salvation by Dan Fagin.
So what does that mean for me? Well, I may or may not have Marfan’s, and I don’t appear to have acromegaly (though hey, last blog post I had two tears in the heart and now I’ve got a trifecta so who knows what happens by the next time I post). But three tears in the aorta, in three different places, and at three different times…well, he may not have said it, but my vascular doctor definitely was interested in how this was happening. He even said there was a chance of something Marfanoid occurring.
So where does that leave me?
Well, I don’t rightly know. As I told an old friend, I’m in a bit of an odd headspace. I’m grateful to be alive, I feel guilty that better people than me don’t get to walk away from this often, I feel scared that I’ll run out of time and worst of all, that I’ll leave behind an unfinished legacy. I have so much I want to do and I feel like I’ve really only started to hit my stride.
2016, in a weird way, was a pretty solid year for me. My students got into great colleges and won tons of awards for their films. I went far in writing competitions and produced some of my favorite stories in years. I’d lost over 40 pounds (the healthy, grind-it-out way!) in four months. The wedding was officially on and plans set. New and promising film projects were developing.
Now I can hear it. The Tick, Tick, Boom.
Jonathan Larson, the creator of Rent, wrote the show Tick, Tick, Boom about turning 30. He’s afraid of what he hasn’t accomplished. All the while, he’s hearing a ticking clock. The sad irony is that Larson died at 36, just before his soon-to-be-legendary show Rent debuted. The cause? Undiagnosed aortic dissection. He was sent home and died soon after.
I performed the opening monologue for my final performance piece in my Acting for the Stage and Screen class in college. I had to pretend to be Larson’s character, hearing that ticking clock.
I’m hearing that Ticking now. And while I can shunt it during the day with classic movies, books I meant to read, video critique emails for my students and minor distractions around the house…in the later hours, or when I just let myself be still, I admit, it gets hard to keep that Ticking at bay.
But you know what? Even as I felt that fear settle in my stomach as I left UPenn, I had a little reminder on the way out to keep moving forward. It was at the Children’s Hospital across the street.
If that doesn’t put things into perspective, I feel sorry for you.
This was post ended up being heavier than I expected it to be. So to leave you on a lighter note, I present to you the Wonders of UPenn’s Cafeteria: The World’s Smallest Apples.
Until next time,