“What brand of cancer do you have?” the man asked me, as we sat in a basement waiting room of the Cleveland Clinic.
I hesitated a moment. He wore a hospital gown. Next to him sat a quart container of some sort of concoction he was required to ingest before going to his scan. He had a “port” below his left clavicle. I sported an IV in my left arm, ready to receive the contrast fluid for my CAT scan. Infinitely better than the drink.
“I don’t have cancer,” I said, surprised at how relieved I sounded telling him this. I went on to give him the nickel version of my one-in-a-million genetic defect. Two other people, one wearing a burka, chatted quietly in Arabic nearby. I take a lot of comfort knowing that people come from all over the world to see these doctors. There’s a rumor going around that the Saudi royal family paid for the top floor of the Intercontinental Hotel which connects to the clinic.
“What’s the life expectancy of that sort of thing?” the man asked, bringing up the question everyone thinks, but no one asks. Most waiting room companions aren’t as inquisitive. I wondered if this was common in cancer patients. Perhaps the days and weeks in treatment create a sense of community. Life expectancy was a term that I fixated on when I was first diagnosed. I thought, Never mind the details, how long have I got? The problem with my rare and complicated disease is that there is no average or expected outcome. One surgeon told my wife (after a very successful surgery) that most VEDS patients die within a year of their first complication. I suppose it would have been equally accurate if he’d said most VEDS patients die within a few hours of their first complication. Another doctor once opined, “Now that he’s survived the aortic dissection, I don’t know what kills Jon.” Or, as my friend Dan says, “Jon can’t be killed by conventional weapons.”
I’m cognizant of the fact that the internet is more permanent than me, and that everything that I write will sound somewhat ironic in a post-Jon world. It’s very hard to talk about my experience, without the words having a haunting quality. Unless, of course, I live to be 85, in which case my wife will be irritated because my life insurance expires at 80.
My conversation with the man in the waiting room was cut short when my name was called. We wished each other well, and I went in to the CAT scan room remarkably not nervous. Maybe it was because we’d had a mixup on my tests in the morning, so the initial pre-test nerves had worn off. I also wasn’t wearing a hospital gown because they were squeezing me in, so I felt like regular person. Nothing like a hospital gown to make you suddenly feel ill.
The contrast is administered by a machine that forces it through my system faster than my normal circulation. I can feel it coursing from my arm, through my torso to my toes. I’m always nervous that the warm fluid will blow out of the vein and “infiltrate” my arm – because this has happened more than once. It not only hurts like hell, but I end up with a sore Popeye arm for several days as the material is absorbed… and they still have to do another IV and try again. When the contrast goes where it is supposed to go, it gives the sensation of losing bladder control – a piece of valuable information passed along by the most mindful technicians.
This was my first visit to Cleveland without Monica, and my first checkup without the kids. When my MD walked in, she opened the door cautiously, because she’s never seen me without our kids in tow. She reviewed scans of my carotid arteries, which are all screwed up (that’s the medical terminology.) But, on the bright side, she determined that they were not noticeably more screwed up than they were on prior visits.
This was the news I wanted. I live my day-to-day life with the nagging knowledge that my arteries may not give me a warning before things go wrong – they never have before – but a clean check-up means I don’t have to plan on seeing a surgeon for another six months. In June 2016, just two months after my open heart surgery, I had a “bad” check-up that showed that an aneurysm had rapidly expanded and I needed pre-emptive surgery. The days leading to that planned surgery were some of the most difficult in this entire ordeal. I felt like a dead man walking, going as far as sending my best friend an email with a letter to be given to my kids if I didn’t make it. It was a heavy time.
I know you usually come to this blog for some laughs and maybe some Zen. Before I left the Clinic, I had to use the restroom. Along with having great original art in the hallways, one of the many interesting things about this world class hospital is the restrooms. Now, I know that on some levels, this isn’t funny (but it sort of is). They know their patients come in all shapes and sizes, but generally speaking, toilets in this world are all about the same size. Not in Cleveland, my friends.
All joking aside, I’ve had generally great experiences in all of the hospitals I’ve stayed in, but walking into the Cleveland Clinic is like arriving in the future. It is really a remarkable place where I’ve not only felt the medical care was the best, but I’ve really felt the care of the people I’ve encountered. Once, the food service manager came to my room to take my dinner order, and encouraged me to order the fish. I typically avoid any mass prepared fish, partially because I’m from Florida, but also because I saw the movie Airplane about 100 times as a kid. I contemplated whether he was just trying to get rid of a surplus of fish, and decided to trust his recommendation. When the meal arrived, it was typically under-seasoned (because cardiac/vascular patients are automatically put on a low sodium diet). He stopped by again and offered me a culinary tip: using a little mayo and Mrs. Dash I made an impromptu tartar sauce that, after a day of fasting, made it taste like it came out of a Three Michelin Star kitchen. (Okay, I’m exaggerating, but it was a nice departure from the steady stream of hospital turkey and mashed potatoes that have rendered Thanksgiving dinners a little less special.)
After my checkup, I had a few hours to kill in Cleveland. If it were summer I might have checked out the West Side Market or hit the Rock and Roll Hall of Fame. But I was starving (because of the mixup in my tests, I hadn’t eaten all day) so I took the recommendation of some friends and grabbed an Uber to Shaker Square to eat at a diner called “Yours Truly.” I ordered a completely un-sensible Monte Cristo sandwich. After that ham and cheese, dipped-and-fried food-bomb, I decided a stroll around the square was in order. That walk was abruptly cut short by the reality of 18 degree weather and icy sidewalks.
In order to avoid dying embarrassingly of exposure in full public view on an urban street, I walked into a corner grocer. Because of its proximity to 5,000 square foot mansions, I expected to find fancy cured meats, expensive cheeses, and wines I don’t recognize. Instead, I found meats I didn’t recognize, spreadable cheeses, and wines we drank in college. It was here that I stumbled upon an altercation between a man and a woman who implied he might not be a faithful person. It was like a live version of the National Enquirer in the checkout line. It all would have blown over, except a third woman – a stranger to both adversaries – began first commending the man on his composure, but eventually berated him for not accepting the compliment to her satisfaction. Typically, I would have just walked away, but it was 18 degrees outside. As the rhetoric escalated, it occurred to me that this is how shootings start and how truly ironic it would be to leave the Cleveland Clinic only to end up in the crossfire of a stranger’s love triangle. The store’s security guard was guilted into action by the store manager, at which point the lady began mocking him, “What are you going to do? You’re carrying a flashlight!”
It’s always good when the most exciting thing to happen in Cleveland happens outside the hospital. If all goes well, I’ll be back near the end of the summer where they’ll examine a different set of arteries. The visit may even be part of our return trip from the west coast. Something tells me that a conversion van will fit right in in the midwest.
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“Don’t make me turn this van around” is written by Jonathan Kile, and approved by Monica Kile. Check out Jon’s periodic column, “So How’s That New Book Coming?” at Creative Loafing – Tampa. His 2014 thriller, The Grandfather Clock, is available free for Kindle on Amazon.com and other eReaders at Smashwords. Reach him at firstname.lastname@example.org. Monica is a freelance grant writer, non-profit consultant, tour guide, and connoisseur of 70s rock lyrics.