“Creech.”
The name escaped my lips somewhere in the third mile of a five-mile run. It was a name I had been trying to think of, off-and-on, for the better part of a decade, the last name of my nurse Janet from Viking Street in Orrville, Ohio.
Janet brought me sausage biscuits from McDonald’s just about every morning because it was the only thing I would eat. She was typically my nurse on first shift. She had short brown hair and was about the same age as my mom, and so she felt very motherly to me.
Those things I could remember, but not her last name. Until now.
She died sometime after my initial 70-day residency at Akron Children’s Hospital, which started on Jan. 3, 1991, but during my more than two years of chemotherapy and radiation as an outpatient, time spent eradicating all the leukemic cells in my 15-to-17-year-old body. She died of breast cancer after years of caring for kids with cancer.
You can’t survive a children’s cancer ward and not remember the kids you knew who didn’t make it
Above: School photo of Matt from 1991, the year he was diagnosed with Acute Lymphoblastic Leukemia
But for a long time, I couldn’t remember her last name. I wanted to know her name, her full name, because I felt it was important. I imagined one day reaching out to her family and telling them how much she meant to me when I was near death. And I wouldn’t be able to do that if I didn’t know, or rather couldn’t drag, her last name from the recesses of my brain. It had escaped me for so long, until that run, when I imagined she was just behind me, to the left, running with me, keeping me company as I churned along a black ribbon of asphalt that cuts between two cornfields in northwest Wayne County, Ohio.
There are others. Todd, who lost a leg to osteosarcoma but runs with me nonetheless. He fell off a horse once and his prosthetic leg got caught in the stirrup. Just before he was dragged to death, he reached up and unhooked his fake leg and tumbled down. Then he sat up and laughed like a maniac, like almost being killed by falling off a horse had been the greatest and funniest thing ever to happen in his life.
There’s also Melissa. We had the same disease — Acute Lymphoblastic Leukemia — and the same doctor — Dr. Alex Koufos. She died. I didn’t. I think about her a lot when I run. When she runs beside me, I ponder the reasons, if there are any, for the way fate shook out. Our roles very easily could have been reversed, and sometimes I feel like they should have been.
And there’s Dr. Koufos himself. He died of bile duct cancer just weeks before I graduated from college (and just after his son, Kosta, who plays for the Memphis Grizzlies, turned 9 years old). I’ve only ever cried at the news of one death, and it was his.
He was the most caring man I’ve ever known. I think about his raw red hands as they felt my lower abdomen every week on trips to clinic; about the way he would chuckle at my stupid attempts at humor; the way he told me he barely got into college (a lie, but one meant to keep me from freaking out about missing classes in school); and the way he always said my heart sounded strong right after putting the cold stethoscope to my chest. He probably told me my heart was strong maybe a hundred times, and I’ve long wondered if he meant the organ pumping blood in my chest or something more.
There are more, of course. You can’t survive a children’s cancer ward and not remember the kids you knew who didn’t make it. Terri. Laura Jo. Shelby. Little John. All of them wonderful in their own right and worthy of being remembered forever. All of them ghosts now, wisps of light running beside me mile after mile after mile.
“But this too is true. Stories can save us.”
Those are the first two sentences of Tim O’Brien’s short story, “The Lives of the Dead,” in his book “The Things They Carried.” The story mostly centers around the narrator remembering his 9-year-old self and a girl he loved, Linda, who died of a brain tumor before her 10th birthday. There’s a scene in the story when a kid from school tells the narrator that Linda had “kicked the bucket,” and at first he didn’t understand. It’s hard, the first time you’ve ever been told someone you care about has died. You don’t understand and then you think it’s a joke and then you refuse to believe, like there’s been some cosmic mistake.
Timmy brings Linda back to life by dreaming of her, but the adult narrator Tim brings her back to life by writing about her. I think about this, too, when I run. I think about Janet’s kind brown eyes and Melissa’s fearlessness and Todd’s craziness and Dr. Koufos’s dedication and love and warmth. And then I ask myself, How have you kept them alive?
Because that’s the bargain in the end, right? That’s the answer to the question: Why did I survive? Or at least the answer I can live with, one that is better than “no reason at all.”
I started running a couple years ago. Until then, I had lived most of my adult life as someone who sat around doing nothing, a lot. Before leukemia, like a lot of kids, I was convinced I would be a professional athlete. After leukemia, I knew that wasn’t ever going to happen. Once I got out of high school, where I played baseball and basketball despite undergoing chemotherapy treatments, I stopped competing altogether.
Then one summer, my wife and I took the kids to the beach. When we got back, I saw photos of a man I didn’t know, a man who weighed more than 200 pounds. I didn’t want to pay for a gym membership, and so instead I bought a cheap pair of shoes at a department store and started going out for a very slow run every morning. My initial goal was to make it to the interstate, which is just over a mile from my house. It took me about two weeks to make it that far without walking. Then I wanted to make it back to my house.
All the while, I had music playing in my ears. I had a little bit of everything stashed on my iPhone — Green Day, Katy Perry, Michael Jackson, The Strokes, even my favorite local band, The Womacks. This included my first half-marathon, which I finished despite leg cramps in both legs at the 10-mile mark. I imagined that the reason I was able to run now, versus the handful of times I had tried earlier in my life and quit, was because of the music, listening to something to distract me from the pain.
Then, after about a year and a half, one day I woke up and went for a run without the music. I don’t know why. I just didn’t grab my phone before heading out.
I ran four or five miles that morning. It was warm and slightly breezy. I remember running along the mostly flat, straight road that I live on and hearing the wind rustle the tall grasses that lined the ditch. I remember falling into a trance as my feet slapped the pavement and I breathed, out out in …out out in …
That’s when the ghosts appeared.
Melissa lived in a town just south of where I grew up. I met her at Camp CHOPS, which stands for Hematology and Oncology Patients and Staff, a weekend summer camp. The kids who had cancer got to hang out with the people who took care of them, away from Akron Children’s. I went in 1991 as a patient and spent the good portion of that weekend hanging out in the cabin. One night, I listened to the NBA Championship, Bulls vs. Lakers, on the radio. While all the other campers were making ice cream sundaes in the dining hall, I was listening to Michael Jordan start construction on his legacy.
In 1992, I was a counselor-in-training, as was Melissa, when we first met. She was a couple years older than me and had an olive complexion and tight, short curly hair, the kind that was starting to grow back, to reclaim space it had once held but lost. She was cute, and because of that, and because I desperately needed someone who knew exactly what I had gone through in the last year-and-a-half, I instantly developed a crush on her.
We all hung out with some other kids, including Ben, who was the son of my clinic nurse, Pam, and Kim and Sharon, both teenagers who had long ago defeated their childhood cancers.
Melissa and I were still in the thick of it, though. We still battled baldness and the inability to walk without tripping, our feet unable to navigate even the smallest contours in a sidewalk because they had been deadened by massive doses of Vincristine. We still vomited our brains out after getting chemo and missed extensive amounts of school.
We wanted to be teenagers, not teenagers with leukemia
Above: Matt gets a car from the Wishes Can Happen Foundation in summer 1991.
We hung out a handful of times outside of Camp CHOPs too. We talked on the phone occasionally. I don’t know what we talked about, although I suspect it was probably regular teenage stuff. There was nothing worse, we felt, than being considered “not normal.” We wanted to be normal more than anything in the world. We wanted to be teenagers, not teenagers with leukemia.
We got “better.” She went off to college and then so did I. We didn’t stay in touch after that. Why? I don’t know. I had her phone number pinned on my bulletin board, and it went with me to college, but I never picked up the phone, partly because she was a part of my past, the past I was trying to shed now that I was in a place where nobody knew about my illness.
Once I got to college, I was normal again, and I suspect she felt the same way. She didn’t call, either. I think calling one another would acknowledge that we were not, indeed, normal. We were different. We were still teenagers with leukemia. We would always be the kid walking like a stork, picking our knees up high so our dead feet wouldn’t stumble. We would always be the teenager who is bald, the kid who is skinny, the child who knew and was not afraid of death. We would always be teenagers with leukemia.
Then I went home one weekend and picked up the newspaper and saw her obituary.
There’s another reason I started running, beyond hoping to lose weight, which I did, 40 pounds in less than six months. That was because I would like to live long enough to see my two kids — my 10-year-old son Emery and my 7-year-old daughter Lily — become adults.
Childhood cancer survivors are twice as likely to develop a secondary cancer in their lifetime, primarily because most of the drugs and treatments used in the 1990s to treat childhood cancer were themselves carcinogenic. And if they don’t cause cancer, they often make the heart, the bones, the lungs and just about every other part of the body weaker and more prone to later-in-life health issues.
Through my 20s and even into my 30s, I didn’t really care about any of that. Partly it was because I didn’t know about that stuff. But having kids of my own made me greedy. I survived having leukemia when I was 15, and now, more than 20 years later, I was struck with a worry — who knows if it was rational or not — that I was going to die a young death, and I wanted more time than that. I figured the best way to make that happen was to get in shape.
And so I ran. In 2013, I ran 617 miles. In 2014, I ran another 672 miles. I want to run 1,000 in a year, and then after that, I want to run 2,000. Even now, as I sit here in the best shape of my life, able to slip on a pair of running shoes and head out the door and knock off eight miles without even thinking about it, I still worry about dying young. I don’t fear it, but I don’t like the fact that it is possible. I’ve long felt that I’m living on borrowed time.
I started writing about being sick almost immediately after I stopped being sick. Or rather, once I had finished my treatments. The first thing I wrote about having leukemia was for a scholarship contest with Guideposts Magazine. It was a religious publication, so I sprinkled a lot of “Praise Gods” and “I really think I’m a miracle.” I didn’t win.
In college, I kept leukemia to myself for the most part, not wanting it to color people’s perception of me. But I wrote about it a lot. Then, in my final semester as an undergraduate student, I took a creative writing workshop. I wrote about it in that class, and I kept writing about it on the side. In grad school, I wrote a memoir about having leukemia. In my various jobs as a reporter, I’ve always found ways to write about kids with cancer or myself with cancer. I just can’t seem to not write about it.
I’ve thought long and hard about why it keeps circling back to that time in my life that I had leukemia, and I never had an answer. Part of it, I realize now that I’m older, stems from the fact that I’ve been trying to make sense of what happened. Sufferers of trauma do that. They weave what happened to them into a narrative that allows them to see a larger meaning.
I’ve just never been able to see what that larger meaning was. At least I wasn’t able to until I started running and my ghosts started running with me. I’ve been writing about that time in my life to keep Melissa and Dr. Koufos and Janet and everyone else alive. To let them live forever in words, a place that cancer can’t touch.
We had a support group at Akron Children’s Hospital for kids with cancer that met, I think, on Wednesday nights. There were some longer-term survivors, late teens who were no longer in danger of relapsing, in the group. And then there were those of us who were currently undergoing treatment. It was something I looked forward to more than anything else in my life, which at that point consisted mostly of sitting in my bed at home and numbing myself each day by watching the same old reruns on television: “I Love Lucy,” “The Beverly Hillbillies,” “Gilligan’s Island.”
The meetings often coincided with a trip to the clinic for me to receive my outpatient chemotherapy. After spending two or three hours in the treatment room, having dangerous chemicals pumped into my body, Mom and I would head over to the Ronald McDonald House and watch TV until later in the evening. Then I would head back to the hospital, somewhere on the fourth floor, where the support group met, close to where I had lived for 70 days in the winter and spring of 1991.
The group was led by a social worker named Nancy. She was the first person I met at Akron Children’s the day I arrived there. Kind and soft-spoken, she had a round face and soft blond hair. She laughed — or maybe chuckled is a better word — at everything that wasn’t specifically related to our illnesses. Her laugh was always quiet, but it was real and something that was sorely needed on a childhood cancer ward. She spent a lot of time in my room, talking to me, talking to my parents, making sure we knew that if we ever needed anything, anything, we simply had to ask.
I don’t remember specifically what we talked about in that support group. I don’t remember how many times we met, although I do remember thinking it wasn’t often enough. I remember eating snacks. I remember going to a lab and having the technicians show us how they do blood tests. I remember one of the girls, Shelby or maybe Laura Jo, talking about going to prom. I remember sitting next to Curt, who loved basketball, and across from Tim, who was a swimmer. I remember Terri being wheeled into the room in her hospital bed. I remember feeling at home with these people. My tribe of sick kids.
Earlier, before we were a support group, Tim, the swimmer, came up with an idea for a board game for kids with cancer. He called it “Road to Remission.” The players drew cards, and then moved plastic game pieces around a board, either forward or backward, depending on what the card said. When I was still a resident of the fourth floor at Akron Children’s, Nancy brought in a stack of index cards and a marker and asked me to write stuff down on the cards. She told me to write about good things that happen to you when you’re in the hospital, battling cancer as a kid, and the bad things. And then she told me to assign each of them a number of spaces to move forward or backward.
I imagine I wrote mostly bad things down. I had a rough time in the hospital. I developed an infection, probably bacterial meningitis, on my brain, which is what kept me in there for so long. I became severely depressed because it didn’t seem like I was ever going to go home. I had gotten to the point where I was fine with death, to where I didn’t fear it anymore. I probably wrote about feeding tubes getting clogged and physical therapists making you walk down the hallway and nurses waking you up in the middle of the night.
There were good things, though. Nurses like Janet who brought me sausage biscuits and doctors like Dr. Koufos who really, truly cared. There was another nurse, John, who gave me a Ricky Henderson rookie card. I hope I wrote that stuff down, too.
Obviously, there were enough good things written down so that players could actually make it to remission. It wasn’t the kind of game you could ever lose. The point was to get everyone to talk about their experiences. But sometimes I wonder if we wrote too many good things down, if maybe not every player should have made it to remission, at least not if we wanted it to be a realistic portrayal of the lives of the game’s creators.
The hospital turned it into a full-fledged board game. We even shot a commercial. “Good Morning America” heard about the game and did a segment on it. Tim flew to New York City to talk about it with host Joan Lunden. Then Lunden read the names of the other creators and showed our photos, including mine.
But then, the caveat — five of the eight creators had died. Only Tim, Michael and myself, reached remission. And then, not really.
Many, many years later, I was thinking about Tim. Probably after a run. I called Pam, the nurse who called to tell me Dr. Koufos had died, and the one person at Akron Children’s I have managed to stay in touch with. I asked her where Tim was and what he was doing.
“Oh, Matt,” she said.
He had been a ghost for quite some time.
I ran my first marathon, the Akron Marathon, in September 2014, raising funds for the Leukemia and Lymphoma Society’s Team-in-Training and collected more than $1,500 for blood cancer research. And I chose Akron because the race finishes in the shadow of Akron Children’s Hospital. The finish line is home plate in Canal Park, home of the Akron RubberDucks, a Double-A minor league baseball team. As you make your way into the stadium, if you look up and to the right, you see the blue-and-white logo of Akron Children’s, perched up on a parking garage that overlooks the baseball stadium, by a footbridge to the place I called home so long ago.
Around mile 20, as we ran through a gorgeous tree-lined neighborhood, we came upon a water stop. I was starting to slow. My friend Stuart and I had been keeping about a 9:45-minute pace throughout the race, but my brain was starting to go. I had only run 20 miles once before, three weeks earlier. I was hitting a wall.
I walked up to the water stop and reached out for a cup. I recognized her face immediately, one that hadn’t changed a bit since the first day I met her nearly 24 years earlier.
“Nancy!” I shouted.
“That’s me,” she said.
I don’t think she recognized me, and in my 20th-mile stupor, I never told her who I was. I imagine it probably dawned on her later. But the recognition for me was immediate, and so I hugged her and probably freaked her out. And then I moved on, energized, feeling once more that everything would be all right, that I would make it to the finish line.
My energy lasted about three more miles. That’s when my legs cramped. Three miles from the finish, again. I told Stuart to go on. He had been battling an Achilles issue and slowing down made his foot and leg hurt even worse.
I started walking and stretched. I got going again, and then, toward the end, was coming down South Main Street, toward Canal Park. I looked off to the right and saw the hospital. My room and the place our support group met had long since been demolished and replaced with a big, new fancy hospital floor, but I could see where my hospital room had once been, where I had once looked out a window from my hospital bed onto the streets of Akron, streets I was now running. I thought about those days and nights when my mom or dad begged me to get out of bed, to take a walk down the hallway, just to sit up, to care, to want to live. I thought about the nights I couldn’t sleep, and the nights I could. I thought about the day I was supposed to have brain surgery to remove that infection, and how that surgery was called off at the last minute. I thought about how, when I got out of the hospital, I couldn’t walk from my bedroom to the kitchen without getting exhausted, without feeling dead.
As my feet shuffled along the road, I thought of Melissa and how we used to walk like storks. I thought about Dr. Koufos and all the times he told me my heart was strong, and how, on this day, it had powered me through more than 25 miles, how it had just a little bit more work to do, and I realized that it really was strong, both physically and metaphorically. And I thought about how I missed him a great deal. I missed all of them so, so much. I imagined they were all with me, some of them lining the streets with the other spectators who were screaming and yelling and holding up signs. And others, like Melissa and Dr. Koufos, were running at my side, with me every step.
My feet plodded on, along the Akron pavement. The hospital disappeared behind other tall buildings in downtown and then I made a turn and then another turn and I was in the stadium.
I didn’t look up at the hospital. I looked forward, toward the finish line. I ran as hard as I could, and I crossed it almost sprinting.
I walked through the chute and turned right and then I saw it. The hospital. I took a few more steps, but then I had to stop and sit down. I needed to look at the hospital and think. I was exhausted and needed to just stop after more than four hours and 44 minutes of forward movement.
I used to joke after a run that I felt like I was dead, but I’ve stopped making that joke because it is ridiculous. Every time I finish any run, no matter how exhausted I might be, I feel more alive than I ever have in my life.
I remember one recurring dream I had during my 70 days as a resident of Akron Children’s. I remember it because of how alive it made me feel, how strong and powerful, at a time when I couldn’t even get out of bed to take a bath. In the dream, I am running down a hill behind my old elementary school. I’m carrying a baseball glove and a ball, and I’m running, fast.
I used to see this dream as one about baseball, because of the glove and ball, and because baseball was my sport. But in the dream I never actually got to a field to play ball. I just kept running.
I’ve reframed that dream as one about running now, and I think about that dream whenever I run now, remembering how I wished I could just keep going, forever. And I think about my ghosts, and think if I keep running and writing forever, I can keep them alive. They can stay right here beside me, mile after mile after mile, word-by-word.
Apr. 15, 2015