If I were posting this in the old days (I cringe even as I write that, as those “old days” don’t seem…. old), there would be a wire trash basket full of wadded up pieces of paper in the corner of the room. And a bigger pile of paper outside the basket, since I’m not a great shot. I just want to tell you why my upcoming Pelotonia adventure is important and cool, but I’m having trouble keeping it simple, stupid, and that’s really not like me.
First, I reporterized. I contacted Big Cheeses at Pelotonia to give facts and figures about the cutting-edge research the organization funds at the James Cancer center, the millions of dollars raised, the sponsors who pick up every expense. Everything you could find out for yourself on Google.
Then, I historicalized. I started recounting my path from Cancer Diagnosis I… through 17 years supporting Livestrong and its commitment to patients and families and patient navigation… through Cancer Diagnosis II and III… and the closing of my clinical trial. Everything you could find out for yourself on Google and on this blog.
Now, like I’ve been doing in yoga for 27 straight days, I am clearing the clutter and just feeling it, so you can feel it.
When I was riding in the last hour of my first Pelotonia, 50 (ok, 48) miles on a borrowed bike that was too big for me, I was toasted. Roasted. Uncomfortable, hungry, and probably more than a bit disgusted with myself at not being able to tick off a 50 (ok, 48) miler like it was an afternoon cruiser ride. Then, a woman on the side of the road said to me, “Thank you for riding!” It was her tone that almost made me stop my bike. It was like me riding my bike in this event was helpful to her personally. And maybe that’s what she meant, because a few miles down the road, a man held up a sign that said, “A Pelotonia-funded clinical trial saved my life.” Impact. It’s one of the buzz words at Pelotonia, and it manifested itself into reality right then.
I actually signed up for a clinical trial that weekend in Columbus. One of the trials Doctor Sameek Roychowdhury is running is looking for genetic markers in DNA and RNA, hoping to come up with treatments specific to patients’ disease. I’m in that trial, but we’ve been waiting until I’m between trials to do biopsies to get tissue for testing. No reason to move on just yet. But I touched base with Dr Roychowdhury this week to see if that trial is still going (it is) and what else he’s working on (a lot) (and it sounds super cool). I hope to get details in August.
Well, it’s not imminent, but it is time to look around, since my PHA trial sponsor has closed the trial. Tiziana Life Sciences promises to keep supplying my meds under compassionate use until they don’t work anymore or get too toxic. A drug or company buy-out could change the permanency of that promise. Thus, the exploration.
And that brings me back to Pelotonia. All it does is fund cancer research and cancer researchers. Its generous sponsors mean 100-cents of every $1 donated are finding and perfecting tools to slay the beast. I fiercely supported pretty much only the Livestrong mission of patient support, education, political representation and survivorship for nearly two decades. I loved (and love) the pragmatic attitude of Livestrong: People are going to get cancer, let’s help them. I like to believe I was and am a part of the Livestrong fabric. Now, I am forced to be a bit more pragmatic about my own situation, as the stakes are high and different for me these days. I am actually, inexplicably comfortable knowing that odds are there’ll be no cure for my recurrent Thymic cancer. But, I will, hopefully later rather than sooner, need another clinical trial so I can keep on keeping on. Who’s to say that trial won’t have me coming to Columbus more than one weekend a year?
I read somewhere recently that “hope is not a plan.” I think that defines the way I look at how I fight cancer. I am FULL OF HOPE always. Hope is a powerful engine, but but hope alone won’t get things done. After almost two years of getting to hibernate with meds that are working, I am wide awake and working on a plan for myself.. For now, I am raising money to help Pelotonia fund research for countless cancer patients including me. Then, I’m going to ride my bike 180-miles for that woman on the side of the road and the man with the sign.