The Ghosts I Run With
Sep 03, 2014 by Matt Tullis
This is the first part of an essay I'm working on right now. I think it's particularly poignant, give the race I am about to run and the training I have been doing. If you read it and are moved, please consider making a donation. To those of you who already have, thank you so much.
The Ghosts I Run With
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 who brought me sausage biscuits from McDonalds just about every morning because it was the only thing I would eat.
She died, sometime after I left Akron Children’s Hospital, having been a resident for 70 days. She died sometime after my more than two years of chemotherapy and radiation eradicated 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.
But for a long time, I couldn’t remember her last name. It had escaped me, until that run, when I imagined she was just behind me, to the right, running with me, keeping me company as I churned along the black ribbon of asphalt that cuts between two cornfields in northwest Wayne County, Ohio.
There are others. Todd, who didn’t have legs but runs with me nonetheless. He lost them both to osteosarcoma. He fell off a horse once and his prosthetic leg got caught in the stirrup. Before he was dragged to his death, though, he reached up and unhooked his fake leg and tumbled down. Then he sat up and laughed like a maniac, like what had just happened had been the greatest and funniest thing ever to happen in his life.
There’s also Melissa. We had the exactly same disease — Acute Lymphoblastic Leukemia — and the exact same doctor — Dr. Alex Koufos, father of future NBA player Kosta Kofous. She died. I didn’t. I think about her a lot when I run. I think about the hayride we took together, the one where we joked about how we walked like storks, lifting our weak legs high with every step to avoid catching our dead feet on cracks. When she runs beside me, regular runs and not stork runs, I ponder the reasons, if there are any, for the way fate shook out in that scenario. It could have easily been the other way around, and sometimes I feel like it should have been.
And there’s Dr. Alex Koufos himself. He died of bile duct cancer just weeks before I graduated from college. 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 classes in school); and the way he always said my heart sounded strong right after putting the stethoscope to my chest. I had a strong heart he said, maybe hundreds of times, and I wonder if he meant the organ pumping blood in my chest or something more.
There are others, of course. You can’t survive on a children’s cancer ward and not rack up names of kids you knew who didn’t make it. Terri. Laura Jo. Shelby. Little John. Tim. All of them wonderful in their own right and worthy of being remembered forever. All of them ghosts now in my brain, wisps of light running beside me mile after mile after mile.
Akron Children's Hospital blog post
Jul 31, 2014 by Matt Tullis
Last week Akron Children's Hospital asked me to write something for their blog. They often post patient stories, and so I was happy to oblige.
Here is what ran on their blog, Inside Childrens:
In the dream, I was running, faster than I ever had before. The dream no doubt stemmed from the fact that I was entirely immobile, or at least had decided to be, in the midst of a barrage of chemotherapy treatments.
In the dream, I reveled in the speed at which my own feet carried me. I never considered myself a runner before then, and truth be told, never thought I would run once I survived and started rebuilding a new normal life.
I found out I had leukemia in Wooster on Jan. 2, 1991, and received treatments in Akron until March 1993. That 785-day span included a 70-day-stay on 4-North in Akron Children’s Hospital immediately following my diagnosis.
During those 70 days, I developed spinal meningitis and a host of other complications. But I ultimately went home because of the excellent care of the late Dr. Alex Koufos and the incredible nursing staff.
I’ve led a remarkably successful life since then, one in which I left behind those dark days fighting leukemia. I was a newspaper reporter and am now a professor at Ashland University.
I still write, sometimes for national audiences. I married a wonderful woman and have two amazing kids (especially amazing considering I wasn’t left sterile by the medicines I received).
A couple years ago, though, I realized I was letting my health get away from me. When I tipped the scales at more than 200 lbs. (I left Akron Children’s weighing less than 100), I knew I had to do something.
So I started running. And I started thinking about what I had gone through, and how I could help kids who are fighting what I fought two decades ago.
Now I’m getting ready for my first full-length marathon. I realized there was only one marathon that should be my first, and it would be the Akron Marathon. The finish line, after all, is in Canal Park, easily within site of Akron Children’s.
I imagine myself finishing the 26th mile and looking over at the hospital, thinking about how far I’ve come, and how it’s only been possible because of the people who work there.
I’m also running the marathon as a member of the Leukemia and Lymphoma Society’s Team in Training. This is my second team event now — I did the Cleveland Rock and Roll Half-Marathon last fall.
I’ve long wanted to give back to the organizations that helped me survive, and now that I’ve helped myself hopefully extend that survivorship by actually caring about my own health, I can help these fine organizations.
I’m running, on average, about 20 miles a week right now to get ready for the marathon. That mileage will increase slowly through August. I spend so many of those miles thinking about the days I spent at Akron Children’s, when the only exercise I got came from nurses forcing me out of my bed, making me walk down the hallway, dragging my IV pump behind me.
Those walks seemed like they spread on for miles despite only lasting maybe 50 feet. Now the miles fly by.
I also spend a lot of time thinking about a lot of the patients I got to know while I was a mainstay at Akron Children’s. A lot of them didn’t make it. Of course, at the time, the survival rate for my disease was less then 60 percent.
When I think about those patients — Melissa, Todd, John, Shelby, Laura Jo, Tim, Terri — I think about why I’m really running, and it comes down to this: I’m running because they can’t.
- See more at: http://inside.akronchildrens.org/2014/07/21/after-surviving-childhood-cancer-running-marathons-is-my-way-to-give-back/#sthash.uQPNNITy.dpuf
Jun 16, 2014 by Matt Tullis
We were eating our final dinner in the Outer Banks Saturday night when I looked to the right in the small restaraunt and noticed a little girl, about 8 or 9 years old, with a bandana covering a bald head. I knew the look immediately. It was one I sports more than two decades ago. There were six people in the family, including four kids. They all looked happy to be on the beach, away from real life. I imagine it had been a great week for them.
When they were ready to leave, the waitress told them their bill had already been paid by another couple in the restaurant. The mom wanted to leave a tip but didn't have any cash on her. The waitress repeated that everything had been taken care of. A short time later, the couple sitting directly behind us cashed out. I couldn't hear what the waitress was saying to them, but it took a while to get everything settled.
After they left, the waitress brought our food. We had never gotten our appetizer, but after she explained what had happened, we didn't care. The couple sitting behind us were in the Outer Banks on vacation after having lost their own baby to cancer. The waitress didn't specify exactly how long ago this had happened, but it didn't really matter. They paid for the little girl their baby never had a chance to be.
This is why I do Team In Training, so scenarios like this don't play out ever again. Please consider donating. Every penny helps.
Back with Team In Training
May 30, 2014 by Matt Tullis
I'm excited to do my second event with Team In Training. This year, I'll be running the Akron Marathon and raising at least $1,350 for the Leukemia & Lymphoma Society. This will be my first full-length marathon, and I couldn't have picked a more perfect first marathon.
You see, the finish line for the Akron Marathon is less than half a mile from Akron Children's Hospital, where I was treated for Acute Lymphoblastic Leukemia in 1991. I'll be running the streets my parents drove every day as they came to stay with me in the hospital, the same streets we drove on a regular basis for more than two years as my treatments stretched into the spring of 1993.
So please help me reach my goal. I'd love to raise more than $2,000 this time around. Last year, when I did the Rock N Roll Hall of Fame Half-Marathon in Cleveland, I raised $1,500 for LLS, and I certainly want to raise more than that this time around.
Every little penny counts.
My Fundraising Page
Mar 18, 2014
Teams are made up of individuals. Without them, there is no team.
Welcome to my Team In Training home page.
I have a mission-to help find cures and more effective treatments for blood cancers. To accomplish that mission, I’m participating in a sports endurance event as a member of The Leukemia and Lymphoma Society’s (LLS) Team In Training. Like the other members of TNT, I will be raising funds to help find cures and better treatments for leukemia, lymphoma, Hodgkin’s disease and myeloma. I’m improving the quality of my life by participating and with your support, I can help improve the quality of life for patients and their families as well.
Please make a donation in support of my efforts with Team In Training and help advance the research for cures.