It’s often used as a trope in sci-fi or in very deep philosophical discussions… “if you could go back in time and change one thing.” We’ve all heard about going back to kill Hitler as a baby or to tell JFK keep the damn top up, but a friend of mine and I once got very specific: what would you tell you’re your younger self if you could. I had given that some thought. My knee-jerk reaction was to warn my younger self away from some women I’ve previously mentioned. Another was to issue a dire warning never to drink Jim Beam, though I’m sure at the relevant point, the then underage me would have ignored me. At that point, my friend broached a subject I wish he hadn’t, and a long bout of self-reflection started.
I had been an athlete in high school, cross country and track. Not that I was ever any good, but those were the teams that wouldn’t cut you if you had the dedication and/or stupidity to keep coming back and putting yourself through that every day. Later on, in college, I gave up all that nonsense, but I was required, as I imagine most people are, to take a Phys-Ed to graduate. It was here I got to indulge a long held secret fascination: fencing. I actually showed a bit of aptitude and did well. At the end of the spring semester, the professor held a tournament for all the students, both current and past: a first go around with everybody and then two separate tracks for the winners and for the losers of the first round. I ended up winning the “losers” tournament that year. I probably could have done better, if not for a nagging twinge in my lower back…
I didn’t think much of it at the time; a late teen boy’s unshakable belief in his own invincibility. You pulled a muscle or something; take some Tylenol and get over yourself. It’ll be fine. Well, this time it wasn’t fine, and my mother brought me to the doctor, who did nothing more than provide better pain killers. We went back when those stopped working, and some x-rays were ordered. Nothing amiss there, but I was finally referred to an orthopedic surgeon. He also saw nothing on the x-rays but he set me up with physical therapy and a custom-made back brace; maybe there was some soft tissue injury that he couldn’t see and he would give me some more support while the therapy people worked their magic.
By this point, I could not lie flat on my back without incurring excruciating pain. I had developed a pronounced limp and was beginning to hunch over; I was beginning to joke that I would be leaving Baker’s soon to take up bell ringing at Notre Dame. Then, my right arm began to stop working correctly; that was when, as the kids say, shit started to get serious. The orthopedic doctor referred me to a neurologist, who ordered an MRI. Now, let me tell you, this was a process. Nowadays, every hospital has their own MRI machine or at least can get you set up with one nearby. In 1992, these were rare animals and appointments had to be made weeks if not months in advance. Also, these are not the 21st Century models we have today, where you can have an almost pleasant experience. These were the giant machines with a tiny, man-sized hole in the center, apparently powered by jackhammers. And slow! You weren’t a 20-30 minute In-N-Out Burger like you are today. You got to contemplate your mortality for almost two hours in a coffin-shaped tube with the noise of an NYC road crew for company.
My doctor eventually got my MRI results back and my mom got a phone call. I needed another MRI, this time of my entire spine. Expecting another weeks or months’ long wait, we were surprised that my appointment was tomorrow. Back we went, for another couple of hours of misery; do you remember me telling you how much fun it was lying flat on my back?
The neurologist got the new MRIs and we went to see him. He told us that this was way out of his depth and he was referring us to a very good neurosurgeon; he had already advised him of my situation and I had an appointment with this new doctor very soon.
We then met with one Dr. Bruce Ammerman. In his office, behind his desk, was a gigantic autographed poster of Doug Williams; the year that the quarterback of the Washington Redskins hurt his back, Dr. Ammerman saved the Redskins’ season by getting Doug quickly back on the field and he wanted to make damn sure everybody knew it. He had reviewed my MRIs and I had a tumor growing on my spinal cord, and he was going to have to operate to get it out. He set up surgery for June 9th and told me I’d need 4 or 5 days of recovery and I’d be fixed.
I woke up June 11th in the ICU of George Washington University Hospital; my range of motion in my entire body was the ability to bend my right arm up at the elbow and to move my head slightly from side to side. As you might imagine, I was left with the distinct impression that something had not gone to plan.
It turns out that, after fileting my back like a trout, my formerly believed to be benign tumor revealed itself to be a rather dastardly form of cancer called ependymoma. As a cancer that attacks the epidura (the lining of the central nervous system), it apparently was not high on the list of things they were looking for because 1) while it can certainly attack the spinal region, it much more often manifests in the brain and 2) when it does go after the brain, it tends to start throwing sand in the gears of the neurological system much earlier, there being a lot less space in the skull for foreign bodies to grow. Long story short, 99% of the time, they find ependymoma in under-10 year old kids with impaired brain function. Twenty years old, fairly athletic, and with a bad back is not the typical patient.
At this point, I was a mess. My four, maybe five-day stint in the hospital became seven weeks, with outpatient physical therapy for months afterward. That, however, was not the worst part. I had grown a new doctor now, a radiation oncologist. It turns out that the tumor had wrapped itself around things to the point that there were parts of my spinal cord that had been compressed “as thin as a Christmas ribbon” (his words), and that Dr. Ammerman, for all his skill, couldn’t cut out the entire tumor without doing more harm than good. There was a quite a bit still in there, and left to its own devices, it would grow back. Ependymoma is, for reasons only people with lots of medical degrees to their name can explain, resistant to any chemotherapy. Radiation was my only option.
Forty treatments. Five days a week for eight weeks, being bombarded with radiation up and down the length of my spine. Constant nausea and diarrhea (which is amazing since I barely ate), 24 hours a day for over eight solid weeks. If I tell you I’d drag myself across the length and breadth of hell with my lips before I’d ever do that again, I’m underselling it. If I only knew then what I know now...
I had recovered reasonably well; “beaten cancer”, as they say. I had twenty good years to have a career, a wife, a family, rarely if ever thinking about cancer again. Until I started limping. Not a big limp, just a little unsteadiness on my feet sometimes. Well, I thought, with what my central nervous system has been through, I’m not terribly surprised to start having difficulty a little sooner than most. I acquired a collection of walking sticks and went upon my merry way.
Sunday, November 11th, 2012, I woke up and my legs didn’t work. Not even a little bit. Trip to the emergency room, finally getting admitted to the hospital and a lot of tests later, the consensus was literally *shrug* “I Dunno”. I then was subjected to so many head to foot MRIs I believe I should have an IMDB page with all of them listed as film credits. I was given a crappy loaner wheelchair and was set up with physical therapy to see if I could recover… anything. Physical therapists are great people, because they will never bullshit you like a doctor will. Most doctors, in my experience, will climb a tree to be evasive rather than stand on the ground and give irrevocably bad news; they hate doing it. This is where the wonderful Jill comes in.
I was toting around a bunch of files and CDs from one doctor to another, and had them with me at a physical therapy appointment. I had asked her if she had seen my MRIs and she said she hadn’t; “master’s degrees aren’t qualified to look at them *eyeroll*”. I pulled out the envelope and said “I won’t tell anyone”. She looked at them on her computer and points something out that I hadn’t seen in the doctor’s notes; she wasn’t sure what it was, but looked important. I told her I’d look it up in detail when I got home. Boy, did I ever.
I fired up WebMD on my computer that night and searched for the mystery word: Syringomyelia. Simple explanation: its where your spinal cord sort of “unravels” and develops little voids or “syrinxs”. It can occur when there has been an abnormal trauma to the spine; the major causes tend to be car accidents or damage caused by… spinal ependymoma! The condition is greatly exacerbated if the ependymoma is treated with radiation!
The truly amazing thing was that the radiologist who looked at my MRIs figured this out from only my scans, knowing nothing of my history and having never set foot in the same room with me.
Armed with this information, I went to my next doctor’s appointment and he agreed with the radiologist and that it was more likely the radiation rather than the cancer itself. “If you had this type of cancer now, radiation would be the very last resort, if it would be a resort at all. In 1992, they didn’t have anything else.”
He still had some different things he wanted to try; none of them panned out (obviously). When I went to my next physical therapy appointment, I told Jill everything and asked point-blank “I’m never going to walk again, am I?” to which she replied simply “No”. She got the ball rolling for a permanent, fancy wheelchair and shifted her sessions from recovery to how to be a better wheelchair pilot. That in the long run, was for the best.
That brings us back to the philosophical discussion from many paragraphs ago: what would I tell my younger self? My knee jerk reaction would be “Don’t have the radiation!”, but I have mixed feelings about that. Would the cancer have come back without it? Would I have developed syringomyelia without it? Would I still be walking without it? The answer to all of those is: who knows? I’m still alive; maybe it would be better now, maybe it’d be worse, but who can’t say that.
So, all that being said, I can unequivocally attest now that, if I could tell my 20-year-old self one thing, it would be:
“Date Kim Kasprzak just long enough for her to introduce
you to Cyndi, your future wife, then run away like your hair is on fire!”
But that’s a story for another time.
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