Run Every Day

In 2013 I ran 357 out of 365 days. That means that I ran every day except eight of them. I remember most of the days that I didn’t run that year. Three of them for a minor injury. A couple of them due to apathy after a failed race attempt. But most of those days were great. That doesn’t mean that I loved every run. I ran over 4,000 miles that year. Some of them must have been unpleasant.

“Run Every Day” was a mantra that pulled me through last year during Shawn’s longest admission when I was disoriented and overwhelmed. I even made it one week. Seven days in a row.

Run Every Day.

Shawn’s September chemotherapy admission lasted 15 days, just like every other chemo admission. As his physical side effects became progressively more intense during each one, my running diminished each time to the point where I ran only once during his last admission. By then I no longer recognized my running or myself.

Run Every Day.

Right now I run at the back of my group with the recently injured, very pregnant, and surgically treated.

I used to run 10+ miles every day.

Run Every Day With No Minimum Distance.

Shawn was discharged from CHOP for hopefully the last time on September 26th. I decided soon after that I would Run Every Day In October with no minimum distance.

I ran hungover more than once. I ran tired many times. I ran bored a lot. I ran in weather that I would have preferred to not run in. I ran with friends. I ran by myself. Sometimes the only thing that got me out of bed or off the couch was my decision to Run Every Day In October. Most runs ended better than they began. Kinda like most of the 357 days in 2013. By the end of the month running began to feel familiar again in a good way. I ran 129 miles in October, an average of 4 miles per day.

October turned into November. I’m still running.

My Most Used Words

I was scrolling through Facebook recently and came across one of those silly word cloud generators that a friend had done and allowed to be posted on her page. I noticed that my friend’s “most used words” made sense for what I know about her, but were also all positive words. Surely at some point in whatever time period was being scanned she must have posted some negative words and maybe a curse word or two. But there were none in the cute little cloud.

“Click here to discover your most used words on Facebook!” it prompted. Sometimes I get curious and so despite my hesitation about privacy, malware, and spam, I allowed this site to scan my recent posts, pictures, and comments and create a word cloud of my most used words. The words most used would be biggest and probably closest to the center.


There it is, front and center using the biggest letters – Shawn. Shawn is the center of everything.

My eyes scanned quickly for Lilly. Surely Lilly would be there. Lilly has to be there. I found Lilly. Not in the smallest letters, but close, and on the outside of the cloud.

Lilly the person (vs. Lilly the word) also feels small and on the outside lately. She feels neglected because she IS neglected. She eats, she has a comfortable bedroom to sleep in, she gets to school on time every day. But she does not get the amount of attention she should get from her family right now while Shawn is big and in the middle. We know this. We acknowledge this. We all resent this.

Other words are also notably small and on the periphery. Running. Food.

CHOP is bigger than cancer.

Bill isn’t on there at all.

Who knows what algorithm is used by this program to pick the words and display them in this arrangement. But I can’t say that it got them wrong.

The toll this all takes on the family is huge.

It Doesn’t Rain on Broad Street Days

My last post was based on a race that I’ve historically had little interest in. This one is about a race that I care deeply about.

I ran my first Broad Street Run on May 7, 2000. I’d started running regularly again the year before and by February of that year, I found myself running 6-7 miles at a time and loving it more as the distances got longer. Running had become something I did because I enjoyed it. I saw an ad for this 10 mile race down Broad Street and thought, “that looks like fun, I wonder if I could do that.” That might have been the moment that running became a passion, a step up from a hobby.

Sixteen years and 13 Broad Streets later, it has become something that I can trace my life by. I was a 27 year old single woman with no kids the first time I ran it. I’m now 43 with a family. I’ve finished in the top 5% and the bottom 25%. I’ve run it pregnant with both kids. It’s been hot, cold, sunny, cloudy, windy, although it’s never rained. I’ve run it as a capstone to a 90 mile week during peak marathon training, and it’s been one of only a handful of runs I’d done in the previous month. It’s the only race that I will run every year that I am physically capable of running 10 miles. I don’t think that I can adequately describe exactly what this race means to me. When I turn left from Olney Avenue and walk onto Broad Street and look down the wide empty street toward City Hall, I get goosebumps and smile silently every time. Lots of things change in our lives from year to year and decade to decade. But standing at the start of the Broad Street Run on the first Sunday in May is a consistent ritual for me.

Then one year everything changed.

Independence Blue Cross has been the title sponsor of The Broad Street Run since I’ve been a part of it. It’s also my insurance company. The one which has paid almost $2 million so far in pursuit of a diagnosis and now a treatment plan for Shawn’s cancer. In early February, our team at CHOP brought in a social worker to one of our meetings. I’d been growing increasingly uneasy about how we were going to be able to pay our bills now that I was out of vacation days at work with no end in sight. The social worker put me in touch with an organization called Fred’s Footsteps. They provide financial assistance to families in situations like ours, who were previously doing ok but a child’s serious illness causes major gaps in income. They want parents to be able to focus on their child’s care instead of worrying about money. The organization was founded in memory of Fred DiBona, CEO of Independence Blue Cross, who died of cancer in 2005. There’s a picture on the Fred’s Footsteps website of him presenting the awards at Broad Street. When I saw that picture, my connection with Broad Street got stronger. I knew that this year would be even more meaningful to me.

On February 1st, I registered for Broad Street from Shawn’s hospital room. Technically I entered the lottery, but since I’m considered a veteran runner, having run the race ten or more times, I’m guaranteed entry.

On April 28th, I read this article about the Broad Street race director’s own recent battle with cancer, and how his own father’s cancer inspired him to get involved in the race. Jim Marino is well respected in the running community. I was floored by what I read there and the additional connection that I now felt with Broad Street. I wrote to Jim that night. I don’t know him. We’ve never met. I wrote to him to thank him for what he’s done and to tell him about what Broad Street means to me and why, and the reason that it’s more meaningful this year. I didn’t expect to hear back from him, at least not for a week or two. He had the sixth largest race in the U.S. to put on three days later, after all. But I did hear back from him. Within a couple hours. And apparently I’m still making people cry.

Bill and I talked this week about the logistics of race day. We had both been watching the forecast and saw the rain. Surely that will change, we both agreed. It doesn’t rain on Broad Street days. But lots of things are different this year. Maybe this is one of them.

Then there’s the issue of the shirt color. Each year that I’ve run, the race shirt has been either blue, gray, or white. A few years ago I noticed a pattern. Gray shirt years are terrible. I’m usually unprepared and run correspondingly bad (typically when each kid was a baby). White shirt years are in the middle. Never extraordinary, but not usually bad. Blue shirt years can be magical. I’ve set three PRs in blue shirt years, two of them surpassing my expectations. But great races aren’t always defined by the finish time. At the expo while we were walking to get my shirt, I saw glimpses of people’s bags with blue cloth in them. Is that what I think it is? Is this a blue shirt year? How can that be? I have no chance to run well this year. But I trust Broad Street.

I decided to wear one of my blue wrist bands this morning. I still have almost all of them. I chose the one from the admission when we got the cancer diagnosis. It made sense to do so.

Before the start at Broad Street 2016

My actual running this morning wasn’t great. It felt like a white shirt race in a blue shirt year. I never felt that spark that comes when everything clicks in a race. But I didn’t expect to, given that I’ve been running less and doing no specific training. I’ve got other things going on.

Some things were different this year – I had to pick up my race packet on Saturday since I couldn’t take an unpaid half day to go on Friday afternoon like I usually do. I teared up while crossing the finish line. I did that only once before, when I ran my best time at this race three years ago after maxing out my training and realizing that I could do much more than I ever thought I could. Today I teared up knowing that Bill and both kids were at the finish. And Jim Marino was at the start making his usual announcements, just like always. But it also rained today, and it never rains on Broad Street days. And our kids don’t get cancer. Nothing is a given.

It felt like the Broad Street Run itself was supporting me this year.

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