The Boston Marathon, Radiation Oncology – Same Same

On Wednesday, September 16, 2015 I quietly registered for The Boston Marathon from my room on 9 South at CHOP. I didn’t tell very many people. I told Bill. I told a couple friends. That was about it. No Facebook screenshots of my confirmation email. Not even the usual excitement of registration day for a goal race. I’ve never cared much about The Boston Marathon. But this year I decided to check it out for myself. The race was 7 months away at that point. This stuff with Shawn will surely be fixed and back to normal by then. It never crossed my mind otherwise.

Over the next couple months, I decided that I couldn’t run with people and post in online running forums without being open to talking about my goal race. My style is to talk obsessively about my own goals. So by November I began mentioning it if anyone asked. It wasn’t a secret. It was my goal race, and I was getting really excited about it. I studied the course profile and weather history. I read race reports. I asked questions of people who’d run it before. Plenty of people are willing and able to give me input and advice about running The Boston Marathon and I was grateful for their help.

The Boston Marathon means a lot of things to a lot of people. For some, they love to be a part of such a historic race, the oldest marathon in the world.  For others, it’s symbolic of their personal running and racing achievements. It’s a prestigious and lucrative event to win if you make a living at running. It’s a party, a chance to reconnect with friends and hang out with other runners. Some people just want to get the jacket.

It’s none of those things to me. But once it became my goal race, I began to care about it. A lot.

As the months passed from September to October to November, Shawn’s illness showed no signs of easing up. I ran out of vacation days at work and was now on unpaid FMLA leave when I was with him at CHOP or outpatient appointments or on days when he was too sick to go to school and no one else could stay home with him. I clung to my running and my training because it’s what I love and also to hang onto at least one thing that was a major part of my life before this all started. I wasn’t running nearly as much as I did when I was obsessed with it to a level that made little sense for a competitive but mediocre runner, but it was still my thing and a big part of my identity.

In December the doctors and I made plans for Shawn to go to Boston Children’s Hospital for a second opinion (I love that phrase considering that we’d seen dozens of doctors by that point). The trip was scheduled for mid February. Among my planning and research about the department and the hospital and what we might learn there about Shawn’s sickness, I was excited to go to Boston. I haven’t been there since I was a kid. I could see the city, maybe even check out part of the race course. The trip was canceled a few weeks before the scheduled appointment. The “large atypical cells” had shown up in his cranial spinal fluid in January and we began moving toward oncology and away from immunology as the likely root cause. Although we still had no diagnosis, we no longer had a justifiable reason to see a neurologist who specializes in immunological disorders in a city over 300 miles away. We’d postpone that trip and revisit it if things changed back toward that direction again.

Throughout February, I kept training for my spring goal marathon, although far less than optimally. I let go of the idea that I could maybe run faster than my personal best time. But that course is not a fast one anyway. And weather in New England in the spring is very unpredictable. But weather is always a gamble and utterly unpredictable.

By March I had let go of the race all together. I could not justify taking an unpaid day off from work to go do my hobby and since this race is on a Monday, driving back immediately after the race would not even help me. Plus I couldn’t be in another state when Shawn’s illness was so unpredictable. We never knew from one day to the next how he would be feeling and if we’d need to go to the ER or get admitted. His illness was utterly unpredictable.

April 18, 2016. Race day. Mobility Impaired runners start at 8:50AM. Elite women at 9:32AM. Wave One and Elite Men at 10:00AM. Wave Three (my wave) at 10:50AM.

And a 9:30AM appointment in Radiation Oncology.

I felt sadness this morning but not the same sadness I usually feel when I have to miss a goal race. It wasn’t running or racing that I missed this morning. And it wasn’t the deep oppressive sorrow that I’ve felt at times along the way to Shawn’s diagnosis and beginning of treatment. The loss I felt today was for the life I had before this happened that is now irretrievably gone.

The Proton Therapy Cyclotron at HUP






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