On September 21, 2007, I finished my 16th, and final, chemotherapy session. I assumed my twisting, protracted, and arduous journey through the cancer labyrinth was over and life would return to normal. To my surprise, the journey forward has contained nearly as many twists and challenges. But through it all, the one constant has been running.
That's not surprising. For as long as I can remember, running has been the common thread in my life. When I was 12, I joined the track team, and blessed with a modicum of talent in the short sprints, I became a good runner on my high school team. I took a few months off after graduating, but soon slipped a pair of running shoes on again, this time measuring the runs in miles rather than meters. Every major life event, good or bad, for twenty years has had an association with running. And so it has been with cancer.
Cancer. One of the most awful, powerful words in the English language: the annihilation of life from within. Upon learning I had cancer, people tend to interrogate: Do you drink, do you smoke, did you play with a broken x-ray machine when you were five? I realized people ask questions like that because cancer terrifies them; they desperately seek a reason why I am different from them. The bare truth – that anyone can get cancer, even a young, healthy, runner – is too frightening to comprehend.
In January 2005, I developed a dry cough, the first in a series of seemingly unconnected symptoms that ultimately included mild night sweats, periodic fevers, aches, a strange firmness to my left side, intense itching, and fatigue. The cancer was insidious -- the killer lurking in the shadows, masquerading as something benign, careful not to drop too many clues to its presence lest it be discovered -- as it spread from one lymph node to the next.
In the end, cancer tipped its hand: I developed intermittent, excruciating pain in my right arm that drove me to the doctor. He made a cursory diagnosis of a pinched nerve. As I was leaving, however, curiosity got the better of me, and I asked if there was any reason for why my left side would feel firmer than the right. It was an unusual question, but he was willing to humor me. I lifted my shirt, he felt both sides of my abdomen, and the color drained from his face. I left with an order for a CT scan.
From there, the blows fell hard and fast: a 14 cm mesenteric mass involving the spleen and liver, compressing the left kidney, pancreas, and stomach. An even larger chest mass, compressing the superior vena cava and displacing my jugular vein. Probable diagnosis from a top Cleveland Clinic surgeon: rare primary liver tumor, not resectable. On a surreal February 14, 2007, with the city buried under a foot of snow, the surprise verdict: Hodgkin's Disease, an immune system cancer, potentially curable even in the last stages.
Through it all, I kept running, clinging to my daily run as though it were a rock in a choppy sea. I even convinced myself if I could run, I couldn't be that sick. But I was sick. Finally detected, my cancer had transformed from a slow-moving saturnine beast into a raging monster. I turned a sickly sallow grayish-yellow -- the beginnings of liver malfunction. Large bruises sprouted from low platelets. My resting heart-rate leaped 20 beats from a lack of hemoglobin. My face began to swell.
A photo of me on February 16, 2007 illustrating my SVC syndrome and impending liver problems and me almost five years later on November 7, 2011. My weight was about the same then as it is now.
Enter the monster slayer: Dr. Spiro, head of regional hematology and oncology for the Clinic by way of Perth, Australia of all places. He came across grave, dignified, coolly detached. Rather than a sword, he wielded an arsenal of poisons, specifically in my case a four-drug regimen called ABVD. Front-line Hodgkin's treatment remains mired in the 1970s, and it became clear the best Dr. S, or frankly any oncologist, could offer a person in my shoes was a Faustian bargain: ABVD could save my life, but it could make me sterile, would make my hair fall out, would make me sick to my stomach, and it could permanently damage my heart and lungs. And those were just the common side effects. There was really no choice.
The plan was aggressive: chemo every other Friday for eight months, the maximum number of cycles possible, not-negotiable. Dr. S planned to bludgeon the monster to death, continuing to administer treatment even beyond the point where the scans showed no evidence of visible disease. He said the goal was cure, but the way he said it told me the odds weren't weighted in my favor. Any questions? I had 10,000, but was afraid of the answers, so instead I asked about running. For the first time, a faint smile. "If I told you not to run, we both know you would just run anyway." It sounded like something only another runner would say, and indeed, once circumstances improved, he said he was a runner with a sub-3 hour marathon to his credit.
When you're undergoing chemo, your world stops and you just try and exist. The first treatment was especially terrible: the combination of chemo, being ill from Hodgkin's, and the sudden release of dying cells from the massive tumors left me so sick I could not crawl out of bed. Subsequent treatments followed the more typical course: nausea, dizziness, headaches, fatigue. There was little downtime; Dr. S insisted on sticking to his plan lest the cancer have a chance to regroup and develop resistance. With low blood counts to begin with, he had to maintain a delicate balance; chemotherapy is indiscriminate and kills good cells as well as bad ones, including life-sustaining blood cells. If the number of those essential cells falls too low, treatment must be postponed until they rebound to safe levels. To avoid any delays, I got shots to stimulate my bone marrow to produce extra cells. I became a punch drunk boxer: I'd get knocked to the canvas. Helped up by the blood cell boosters, I'd gather my wits and stagger to my feet. Before I could even lift my gloves to protect myself, I'd be lying dazed on the canvas again.
As tough as it was to endure, it was hard to argue with the results. The giant mass in my stomach softened and receded. The excruciating pain in my arm stopped. I was still pale, but at least my face was no longer swollen. In mid-May, I went for a scan. It showed remission.
It was all I could have hoped for: the cancer had melted like the snow of the long Cleveland winter. Then suddenly something went wrong: I developed a dry cough and my chest began to ache. The Devil had made a call on his bargain: my lungs developed the dreaded inflammation from Bleomycin.
Over the next month despite everything they did – discontinuing the Bleomycin immediately, putting me on high doses of steroids – my breathing steadily worsened. I went from easily able to run for 2 hours to being unable to run a continuous mile. It was humbling and embarrassing. Running was all I had left that made me feel normal, and I frantically tried to hang onto it, pushing myself until I was literally left holding my knees, spitting blood. There was nothing glorious or heroic about this — these were the desperate acts of a desperate runner. Finally, discouraged and defeated, I threw my shoes into the corner and just quit. But after a few days, I saw my shoes sitting there looking lonely and decided even if it meant never being able to do more than mixing walking and running, I wanted to be out there. Eventually the steroids quieted the inflammation and I returned to continuous running, but my right lung was left with permanent scars.
Finally September came, and the biweekly infusions of poisons ended. Certainly, I thought, the hard part was over. I was in remission as confirmed by two PET scans. I had received the maximum number of chemotherapy cycles possible, and I had received every one of them exactly on schedule. Everything that could be done had been done. Life could now go back to normal, right?
But that's like saying life goes back to normal after having an atom bomb dropped on your house. Life can never really go back to normal.
And so it was with me; my life didn't go back to normal. Two weeks after my last treatment, I went for a scan. Over the past eight months, I'd seen Dr. S once a week. Gradually, he'd become less gloomy; we even had a joke about me running six minute miles. You running those six minute miles yet? No, not quite yet, but I'm working on it. But this time there were no jokes. The scan was not good; it showed several concerning abnormalities. We'd repeat it in two months and go from there. As I left the room, he made an unusually personal admission: "Your case keeps me awake at night."
I was shaken. I knew the literature: if you can't achieve at least a year's remission, you're in trouble. I kept the bad news to myself.
Running became everything to me in those days where remission seemed so fragile that even a breath of wind could destroy it. With the prospect of relapse dangling above my head, I did not dare try to find a job. Plagued by nightmares, and with nothing to do, I would slip on my shoes and disappear alone for hours into the woods. For those few hours each day, I was able to escape the lurking, shadowy fear of cancer. It was in running I found my only solace.
The next scan still had areas of concern, but nothing had materially changed. In cancer, no change is good news. Two years passed, each scan showing no change or minimal improvement. Cautiously, I rebuilt my life; I got a job and bought a car. But I made no long-term plans; furtive thoughts of relapse tormented me.
Another year passed. As the risk of relapse began decreasing, Dr. S relaxed and the talk inevitably turned to running - not only is he a runner, but his nurse practitioner has children who are marathon runners as well. In the summer of 2010, I mentioned the one race I'd always wanted to do, the Big Sur Marathon. Dr. S lit up: I ran that one he said. He returned from his office with photographic proof (I was vaguely surprised to see he hadn't run marathons wearing a tie) and urged me to run it. Big Sur is a popular race that sells out eight months in advance; I still lived my life in short increments. But that fall, I summoned the courage and registered, and on May 1, 2011, I ran 26.2 miles of splendid, challenging California coast line. I had quite literally gone from unable to run for five minutes without spitting blood to being able to run one of the world's more difficult road marathons.
February 14, 2012 will mark 5-years since I was diagnosed with cancer. At a 2007 consult, a Hodgkin's specialist told me he had never seen such an extensive case and estimated my chances of "a 5-year failure-free survival" at 40 to 50%. In Hodgkin's Disease, five-years is a big deal; make it five years in remission and the chances of recurrence fall to 2% - good enough to be deemed a “cure.” For whatever reason, I ended up on the right side of that 40-50% number. Most likely, I'm cured of cancer.
In the time since I was diagnosed, I've run over 20,000 miles. In the process I didn’t just wear the rubber from the soles of countless shoes, I wore away much of my anger and sadness towards having had cancer. In that time I've also had both incredible highs: running Big Sur, good scan results, being present for important events for family and friends -- and terrible lows: a severe eye problem that fortunately turned out to not be lymphoma, scares on scans, death of friends who were not so fortunate in their battles with cancer.
A movie script style ending for my story was never a sure thing. And it is still not a sure thing. Certainly the disease still could recur someday. The Devil may someday make a call on the bargain and I could I develop a secondary cancer or heart disease from the very treatment that has prolonged my life. And, I've had to come to accept I'll never be able to run as fast as I once could, just as I've had to come to accept that my life will always be much more challenging for having had cancer. I will always live with the shadowy specter of cancer.
No, a movie script ending isn't quite possible for me. But that isn't just because such things don't exist, it is because my story isn't ending. Certainly, of course, a chapter in my life is closing. My appointments with my oncologist are more spaced out, and I imagine this fall he will note the date, smile and say coming back is optional. But as one chapter closes, another chapter begins. So where will I go from here? I honestly don't know, but I'm sure wherever I go in life, running will be a part of it. The vale of dark and cold will soon lift, and it will be spring again here. I have plans to hopefully run Big Sur at the end of April, and beyond that I see a wide open trail ahead with infinite possibilities to explore. Who needs a movie script ending? After all, a new beginning with infinite possibilities is way something better than any ending, even a storied "movie script ending" ...