One Goal

I am still processing the massive amount of input I sucked in at Pelotonia, but I think writing through it will help. It usually does. These three days in Columbus stoked hope and inspiration, even as they brought news that broke my heart and rattled my confidence. Let’s start with the good.

My friend, Doug Ulman, left his CEO job at Livestrong after 14 years to head up Pelotonia, a  mighty cancer-fighting uprising I’d never heard of. I couldn’t wait to check it out, especially when offered the chance to ride the Big Event as part of Stuart Scott’s Tribe. Pelotonia is a 7-year-old bike riding weekend that raises money for Ohio State’s James Cancer Hospital’s cancer research mission. It’s heavily supported by corporate partners, meaning that every cent of the THIRTEEN MILLION DOLLARS the nearly 8,000 riders raised for this year’s event goes to cancer research and clinical trials (do I have your attention?) In its 7-year history, Pelotonia has raised more than $95 million dollars. Of course I had to see the James to see what’s going on there. In the big picture, it’s probably weird to look forward to seeing a hospital, but my big picture is drawn a little differently than most. It was going to be a highlight of my visit.

Blown away. Doug got me what my hospital liaison kept calling the 50-cent tour (did you know there’s no icon for “cents” on a MAC?), but it was more like the 50 Cent tour (before he declared bankruptcy). It was a gajillion dollar tour. I got to see the James’ innovative, progressive, patient-centered building and philosophy: Research labs on patient floors; hospital rooms with offset lighting so the sun’s never in a patient’s eyes; a clinic just for Phase l clinical trials, since those patients often need more monitoring. I also got to meet with clinical research docs; one who knows my rare cancer well, and one who is running a genetic testing trial that could very well give me my Plan C. Dr Sameek Roychowdhery‘s trial tests DNA and RNA, looking for biomarkers that point to targeted therapies. The study is funded by Pelotonia and the American Cancer Society. I’m in. It’s not a treatment protocol, but it is cutting edge information, and you can’t have too much of that.

Swept away. By the power of 8,000 like-minded bike riders. As you all know, all I know is Livestrong as far as giant cycling events to raise money to fight cancer go. I didn’t know what to expect. I found the same passionate, dedicated warriors, but with a different focus. Where Livestrong helps patients and families with navigation, fertility, lobbying, and recovery, Pelotonia is laser-pointed at research… finding cures. Not better. but different from what I’ve known for 15 years. Riding my 50-miles on a borrowed bike today (a GIANT Giant. The last 12 miles were a challenge.), I can’t tell you how many supporters on the side of the road just thanked me for riding. And I met at least 3 people who said Pelotonia-supported trials saved their lives. Powerful. Humbling. Motivating.

I needed that after getting ground-shaking, heartbreaking news from my longtime friend, Scott McKenzie. He has been a DJ on MIX 105 in Orlando for more than 20 years, and our paths crossed regularly when I was at WESH. He was diagnosed with non-Hodgkin’s Lymphoma seven years ago. We have been exchanging info and updates about our clinical trials and troubles hitting blood numbers for the last little while. I was concerned that I hadn’t heard from him in a while. Then I found out that this week, he came back from Philly, where he had been trying to get his blood levels up to get into one last Hail Mary trial. And it didn’t work. He has entered hospice. Here’s his update, in his words. Here is the passage that hits me the hardest:

“…my 2nd call was to hospice. That evening they were at our door talking about their wonderful services. I just couldn’t believe they were talking to me.”

I’ve read those lines over and over and they still make me cry. Every time. Basically, Scott was blocked from a potentially life-saving trial because his own blood wouldn’t cooperate. Sound familiar? It sends chills down my spine. And no platitudes, please, about how that’s not going to happen to me, because it could. That is my reality, too.

In other news, I got a port installed (!) on Tuesday (no swimming for 2 weeks…… YEA!!!!), so I’m ready to start my PD-1 trial. My first CBC post-Sutent trial, well, it sucked. 600 Neutrophil count, which is the lowest I’ve had yet. Remember, I need 1500. I have another CBC scheduled for Monday, and I’m already looking at flights to DC next week, in anticipation of getting to start my Georgetown trial. I am determined to get in, ESPECIALLY because I now have yet another surgery scar in the battle. At least the surgeon was able to put the port in kind of where my last port was, in 2001. Kind of.

This was also my first time in Columbus, and I loved it. I stayed downtown, and it’s a very walkable downtown. I walked every day to North Market, an indoor food mecca just a few blocks away. I had my first $3 doughnut:

And I ate at Lan Viet, a little Vietnamese shop that had summer rolls to rival the ones from Little Saigon in Orlando. Now you know I’m serious. I went there two days in a row.

I can’t show you the stuff I got from the bakery there, because it’s already in my belly. Next time, as I will surely find my way back to Columbus and to Pelotonia.

It was a powerful weekend. I felt like I was part of something huge and unstoppable. I felt like I was riding with a new purpose, as folks on the side of the road shouted their thanks that I was riding. I felt like I was riding to honor my friend, Scott. I still don’t believe he’s going to die soon. I want to tell him about this new clinical trial I hope to start next week. I want to tell him that after years of hearing him sign off with “Have a MIX day,” it still doesn’t make any sense to me. I am sad. I am angry. I am committed to what I heard and read and saw for the last three days in Columbus. It is this, from Pelotonia: One goal: End Cancer. We can’t strive for anything less.