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If you can fill the unforgiving minute ... with sixty seconds’ worth of distance run ... Yours is the Earth and everything that’s in it.
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Monthly Archives: August 2009
Most of you know my story, so I'm sorry to repeat parts of it. But since so many of you were a part of this chapter in my life, I wanted to share with you my reflections on being two years in remission from cancer. I apologize for the length; when the words start flowing they tend to unleash as a torrent. No hard feelings if its too long to read.
I can feel the warmth of the late summer sun beating on my shoulders as I kneel down and tighten and tie the laces of my running shoes. This is not a time of day I normally run, but today the urge to do a run after work was too irresistible to try and fight, and so, shoes secure, I straighten up and almost instantly ease into a trot. Within a tenth of a mile, I make the sharp turn to the left, and down the corridor into the cool leafy green darkness of the woods. My trail is a fairly wide, mostly flat dirt ribbon cut through a sea of trees that meanders along underneath the cottonwoods and the maples, between the tall ancient shale banks of the Rocky River. Some days the River is a raging brown torrent, swollen from recent rains, but today, the water moves sluggishly and the depth is low enough that the many namesake rocks poking up from below the water’s surface are clearly visible, providing an occasional good perching spot for a great blue heron. It is definitely a hot day and the humidity hangs so thick you almost expect to be able to see the individual molecules hanging suspended in the still air. Although it is still hot and the summer sun blazes down with a fierce intensity, the angle foretells that autumn will be here soon and my trail will be decked out in its best reds and golds. But for now its still warm and humid and the trees are decked out in vivid greens and tall flowering wing stem lines the banks of the riverbed.
This time about three years ago, I was struggling to understand what was happening to my body. You see I have been a runner for almost as long as I can remember, and I always have felt in tune with my body. I couldn’t understand why the previous fall I had developed a lingering dry cough that wouldn’t go away or why the left side of my abdomen felt so much firmer than the right. I also couldn’t figure out why the right side of my chest itched so deeply and so incessantly that I would scratch at it absentmindedly until it literally bled. What bothered me most is something that continues to hound me to some extent to this very day -- the sudden attacks of nauseating, aching nerve pain radiating down from my right shoulder into my elbow that would stop me cold and leave me doubled over in pain. I fought that pain all through the summer and fall of 2006, on into the dark, cold days as the calendar flipped over to 2007. Finally the pain became too much and I went to the doctor. CT scans revealed that I had a fourteen centimeter mass in my left abdomen and what were ominously described as “shadows” in my chest. The shadows turned out to be masses that took up most of my chest and were pushing upwards into the right side of my neck, displacing veins and arteries. My right arm didn’t hurt because of a pinched nerve; it hurt because the nerves and blood vessels were being strangled to death.
I was all of 26-years old and suddenly found myself sitting in waiting rooms, waiting for the local surgeons to palpate the abdominal mass and to remark upon its grotesque size. They all shook their heads and pronounced me “a Clinic case.” And so that’s how I found myself among the maze of cavernous buildings that make up the Main Campus of the Cleveland Clinic. There, on a cold and gray February morning littered with a few errant white snowflakes, one of their top surgeons pronounced my mass as a rare kind of liver tumor that had metastasized through my chest. Left hanging in the air, unspoken, was the obvious inevitable prognosis. Only a biopsy was necessary to confirm the verdict.
The biopsy required an incision and a large needle that removed cores of the tumor. I can still remember vividly the sound of the needle’s spring and the sort of dull ache that accompanied each of the five samples taken, as well as the discussion between the two doctors over what my mass represented. It was almost as if it were all happening to someone else, and I was only an observer. I ran a little afterwards, but mostly lived a listless existence, awaiting the inevitable call. On the morning of February 14, the day following a massive snowstorm that blanketed Cleveland with two feet of snow, I found out I didn’t have liver cancer. Instead, I had a type of cancer of the immune system known as Hodgkin’s Disease. Hodgkin’s Disease is one of a handful of cancers that is curable even at stage four. All I could think was I have a chance now.
Within about twenty-four hours I was sitting on a table in front of an oncologist in now very familiar exam room number seven listening to his pronouncements of how I would require eight months of chemotherapy, and how the goal was hopefully to cure me. I don’t remember too much about the meeting -- I distinctly remember of course being told I would lose all my hair -- but mostly I remember being numb. This still seemed surreal, like something that I was watching happen to someone else from a far away distance. Every night I’d go to bed and wake up feeling fine … and then that terrible feeling would come over me like a freezing wave of icy water when I remembered that I had cancer.
Shocked and numbed and unable to think straight, I did what seemed like the logical thing at the time, but actually was probably one of the stupidest possible things I have ever done in my entire life -- I decided to argue with my oncologist about everything. After having been bounced between doctors and desperately wanting someone to give me a definitive answer, when someone finally stepped in to take firm control … That was too much. So what if I had a 14 cm mass in my stomach and a pleural effusion and SVC syndrome was causing me to have to sleep sitting up because I otherwise felt like I was suffocating. So what if my heart raced because I was just that anemic. There was absolutely no way was I going to be hospitalized. I even argued that I didn’t need a bone marrow biopsy. Later, when I discovered that my oncologist was, in fact, a hardcore runner himself, I decided I liked him and now we get along great. But I didn’t like his seizing control of everything at first, even though I realize in hindsight that’s what was necessary at the time.
My oncologist prevailed, and in the all too short span of a week, I went from a runner – an athlete – to a cancer patient, hospitalized, sporting an extremely annoying giant heart rate monitor and an IV line attached to the newly placed port in my chest. I limped around because my butt hurt from the bone marrow biopsy and found that I couldn’t even think because I was dizzy and hazy from being pumped full of chemicals.
After somehow surviving an extremely rough first treatment, I managed to struggle through the first few cycles of chemo ok as the long Cleveland winter eventually softened into spring. And I was running, of course. First day out of the hospital after my initial chemo, I tried to run. I think I went about twenty yards before the dizziness from the anemia stopped me in my tracks. Things improved from there. One neat thing about Hodgkin’s Disease is how sensitive it is to chemotherapy – within hours of my first chemotherapy session, you could actually see the huge abdominal mass started to diminish and visibly recede. But just as things started to really improve and my spirits started to lift, the road took a sharp turn. I started to develop a cough again. A PET scan after the third cycle of chemo in mid-May revealed I was in remission, but also that I had some inflammation in my right lung. Hodgkin’s Disease is commonly treated with a chemotherapy regimen called ABVD -- it’s a four-drug combination given for 4 to 8 cycles (each cycle lasting approximately a month or 28-days to be precise), with two treatments in each cycle. The “B” drug is Bleomycin -- a drug particularly feared for its toxicity to the lungs and lucky me -- I had developed pulmonary complications from the Bleo.
I tried to keep running through the summer despite the fact that my right lung was inflamed. I would drive down to my trail and try to run up and down it like I had done so many thousands of times before. It seemed so easy then, so elementary, so natural. My trail is flat and easy to run; its dirt surface is easy on your legs. But now just making it to the first bridge that marked the one-mile point was a monumental struggle that left me completely out of breath. I would stand there with my hands on my knees and gasp on the side of the trail and envy the other runners passing by me, watching them with jealous and feverish eyes.
I just couldn’t give up running. Cancer is a horrible disease that robs you of your dignity and inflicts physical, mental, and emotional pain. When you look at the pictures of me from the summer of 2007 you see a cancer patient: the swollen, yellowish tinge of my face, the pitiful thinness of my ponytail told the sad tale that I spent more than my fair share on the second floor in the oncology department of the cancer center. All I had to keep me connected with the rest of the normal world was my running. It was there I could still feel alive and free and like an athlete, not the shell of a human who was seemingly being slowly poisoned to death by chemicals. Fortunately, my oncologist never tried to discourage me from running; when I asked him he sort of smiled and said he knew it would be futile, that I wouldn’t listen to him and would just run anyway. For a second I thought maybe he reads minds, but then it registered that being a runner himself he figured the consequences of not running would be far worse than anything I could do to myself running.
I kept trying to run all through the summer because I just felt I had to keep running to maintain some semblance of normalcy in my life. It was anything but easy. I struggled to jog for just a few minutes before getting out of breath. One particularly terrible morning, I pushed myself to run until I literally coughed up bright red streams of blood. The very next day I sat on a bridge near the hospital and contemplated quitting chemotherapy altogether – what was the point of getting better if I could never run again anyway? But something inside, some small piece of resolve that probably had been hardened and sharpened to a razor point by those many thousands of miles pounding the roads just wouldn’t let me call it quits. Instead, I determined to keep running and keep doing chemotherapy. I would keep going -- or I would die trying.
Since I decided not dying was probably a good idea, I got smart. I ran like a beginner would run, mixing walking and running until my lungs healed enough from the Bleomycin damage to allow me to start running continuously again. Summer faded into fall and I finished chemotherapy on September 21, 2007. The seemingly endless cycle of going for chemotherapy every other Friday and feeling poisoned for days was finally over after sixteen infusions -- eight cycles -- of ABVD.
Any joy I felt about being done with ABVD was soon tempered by a sobering post-treatment scan. My post-therapy CT scan revealed I still had an almost 5 cm mass in my chest, an enlarged spleen, and most ominously a new pulmonary nodule. My normally affable oncologist told me grimly that my case kept him up at night. He said he would do another scan in two months, cautioning me to call him immediately if I didn’t feel well. I felt ok; actually, I thrived. I kept running, growing slowly stronger. The next scan was right before Christmas and it showed the nodule was gone and the spleen was starting to shrink. Every scan since then has been, essentially, as normal as they possibly can be.
I say that because I’m physically scarred by cancer forever. My scans show all sorts of petrified artifacts scattered throughout my chest -- scar tissue is very common with Hodgkin’s Disease and I had much more disease than most people. My breathing has never returned to what it was before chemo -- although I am now a much stronger runner than when I finished chemo, I am not quite as fast as I once was because of the scarred tissue from the Bleo. I still have a mediport in my upper left chest. And my right arm, though it improved once the masses stopped strangling the vessels and nerves, still has a tendency to swell up, become discolored, and ache.
There are emotional scars, too. I struggle with demons that threaten to consume me, that bite at my ankles and hold me back -- the fear of relapse, the fear of having to undergo more treatment. I honestly think I fear more treatment even more than death.
My oncologist never discussed odds with me, and I honestly was always too afraid to ask him. At first you hear you have Hodgkin’s Disease and you think well that’s good because that’s one they can cure, but then you start to dig a little more deeply and you realize while they may cure more people than die from Hodgkin’s, a good outcome is far from assured, particularly for someone like me who had massive disease and probable liver involvement. From my own research, I gathered that my odds of relapse given the extent of my disease were probably in the range of 50% to 60%. I also knew full well that if Hodgkin’s Disease relapses, then it almost always tends to relapse within the first 18 to 24 months. And so for the past two years, I’ve been living on the edge, a proverbial sword always seeming to dangle just a few precarious inches above my head, looking forward to the fall of 2009. I’ve always been a little afraid of trying to piece too many parts of my life back together for fear of everything shattering into a million tiny shards again. I just don’t think I could bear that.
And yet here I find myself running on this humid August 19, 2009, on my trail, underneath the canopy, into the dying late summer light, knowing for certain that I am free of cancer -- the scan yesterday revealed that everything was stable. My strides are regular, my breathing a bit raspy, but steady. I’m at once exhausted and elated; I’m tired from a full day of work and from the stress of worrying, and I’m also a little hungry and thirsty, but freedom invigorates each stride and I feel as though there are tiny wings attached to my heels that allow me to break the ties that bind us to the earth. There is certainly hope in my heart and wings on my heels today.
I knew that I was going down a very dark and frightening path when all this began, but if I could have seen the road that represents the past few years and how many tortuous, mountainous hills that I needed to ascend, I’m not sure I would have been brave enough to even take the first step. Instead, I think I might have simply curled up in fear underneath that exam table in room number seven and never come out. The road I’ve gone down has wound around and up some of the steepest, sharpest hills I’ve ever climbed. It has tested me in ways I never thought possible, and I’m sure in many ways, I was wanting. I’m certainly not perfect; many days went by where I felt sorry for myself. I guess some of that is just normal, after all cancer is a path you wouldn’t wish upon anyone, and I know all too many people who are currently running along their own version, dealing with their own diagnoses. The elation and joy I feel personally over a good result is always tinged with a feeling of guilt over how I am doing so well, when others are still suffering.
What do I credit for being alive, for being here? Maybe I’m just supposed to be here? Not sure about that, but I try to live my life like I’m supposed to be here. I suppose luck has to be credited, more than anything else. Having an excellent oncologist and excellent nurses, certainly helped too. But then, so did a good attitude.
My attitude and approach to fighting cancer was shaped by my experiences as a runner. As the road ahead revealed itself in all its cruelty and darkness, I went through many moments where all I wanted to do was just stop or quit, just as I have had those moments on runs that have gone bad. I think maybe I would have indeed abandoned my journey except that running equipped me with all the strategies and tools necessary to get through the rough areas. It was running, after all, that taught me how to climb the steep hills and to just focus on what I could do -- and how to cope when the road ahead seemed too long and too arduous. If five more miles seems too far, then focus on making it one mile. If one mile seems too far, focus on making it just a half mile. If that seems too far, then focus on tenths. And so on. Just keep moving forward, always. So, there is no doubt about it in my mind – I’m alive because I was a runner. Whether I would have had the inner strength to survive without running … I honestly have no idea. I don’t really want to think about it.
Strangely, cancer has been both the best and worst experience of my life. It has irrevocably changed me, and I will never be able to fully erase the scars it has left. In a way, I wouldn’t want to erase the scars. Honestly, I never knew until I had cancer how much I really loved running or how much I loved life. Cancer gave me new eyes to look at the world and everything now is a little more crisp and in focus. You learn what matters and what doesn’t.
Being a runner, I wondered how cancer would change my running. I’m certainly slower than I was at my peak, but somehow, the runs are better. I can truly say that most mornings I wake up and I ache to go for a run, to feel the wind against my body, to test my limits, to exceed them. This love for running and life was purchased at a very dear price, with such tremendous struggle, and I would hate to ever lose it.
I finished my six-mile run just as the sun was starting its final lilac and pink descent behind the gathering thunderheads that portend storms tonight. It was notably darker and cooler at the trailhead as I brushed the sweat from my arms. It seemed appropriate to finish at sunset, for I’m hoping that the sun is also beginning its final descent on what is paradoxically the most terrible and meaningful experience of my life. I feel as though I will wake up in the morning to find myself running along a new path – not one that is ominous and winding and fearsome, but rather one on which the light that blazes before me is so brilliant, so bright, that it dazzles me just to look forward into it. That irresistible urge is calling me and so you'll have to excuse me ... you understand, I am a runner, and I learned long ago that the siren song of a new path is too strong to try and resist ... I just have to go -- I've waited two years and just can’t stand to wait any longer to run down this new path, free.
One day, in the middle of chemo, when I was in the middle of chemo and having all sorts of problems from the Bleomycin, I went for a run. I was having all sorts of problems at the time with my breathing and most runs I’d end up literally spitting blood (I was too afraid to ever tell my oncologist that – I figured if I told him that he would MAKE me quit running). Anyway this run didn’t end that badly, but it ended pretty badly just the same -- it was one of those days where I couldn’t have continuously jogged around the block if my life had depended on it.
So, I cut the run short, and came back home. I was feeling awful – not so much sick as mad and ready to quit running for good. As I was lying there in the grass feeling sorry for myself, this stupid little cardinal lands in the tree above me and starts singing his heart out. At first I was annoyed – all I could think is go away and leave me alone you damn bird -- but then as I was lying there glaring at him, I started to notice all these little details about cardinals I hadn’t before: the color of the beak, the black eye mask, the way his feet wrapped around the tree branch, how his crest feathers danced in the summer wind. I am sure I had seen a zillion cardinals before that in my life, but I had never taken a moment to stop and actually really look at a cardinal before. It hit me – the world is a full of things I took for granted, but that were really worth looking at much more closely. Maybe I was going to make it through this whole cancer thing, maybe I wasn’t, but either way I decided lying there feeling sorry for myself over running was not the way I should spend however much time I might have.
The next day when I went running, I took my camera with me. When I would get out of breath, rather than stubbornly trying to push through (which is how I’d end up coughing until I was bleeding), instead I’d stop and walk. A lot of runners view walking as a form of weakness and defeat – real runners don’t walk unless they’re really hurt or something. But I decided I would view the chance to walk as a good thing – a chance to see things I missed clipping along at 7-8 minutes per mile pace, and a chance to stop if I wanted to try and capture them for purposes of looking at more closely later. So for about a month, that’s why I did. By the fall I was running without needing to walk anymore, but when I would get free time, I would still go out in the woods with my camera (that’s still how I spend a great deal of my free time...out in the woods, usually alone, for hours and hours at a time).
I never really planned to share my photos with anyone. I have no artistic background, I can’t afford expensive equipment, and my eyes tend to glaze over when other photogs talk shop about f-stops or apertures. I didn’t think my stuff was very good, and anyway, photography was something I mainly thought of as being like running – a hobby I did solely for myself, not for others. But then one day my aunt saw some of my prints and said, oh wow, you really have an eye for taking pictures. I thought she was humoring me, but then my dad hung up a few of my photos in his office and he said people were constantly commenting on them. I'm definitely not some super talented photographer, but I seem to have an eye for taking a pleasing photo. I realized that I could create something that had the power to make other people happy, and that in turn made me happy ...
So I figure I ultimately made something good come out of my cancer. Even if it, or the treatment for it, ultimately kills me, I figure I beat it because I found a way to make something good come out of something inherently evil, random, senseless. I found a modest talent that I didn't know I had, a talent with the power to make others happy, and in turn me happy.