Wednesday, October 5, 2016

A Bittersweet Symphony



The inspiring founder of Stupid Cancer, Matthew Zachary, kicked off Partnerships in Clinical Trials US with a moving keynote address that included a live piano concert of his original compositions. As he told his cancer story – diagnosed with a life threatening brain tumor at the age of 21 (only after Robitussin didn’t help symptoms that, if I recall correctly, didn’t include a cough) – I felt the tears swell in my eyes.

When it comes to cancer, I’m biased. Every day for over two years I have watched my eldest son, now 9, try to beat back an aggressive cancer that previously took the life of his brother. But hearing Matthew and his co-presenter David Fuehrer (Go Tigers!) share their experiences as young adults being treated for cancer, it was certainly enlightening. My reason for being these days is to cure my son, to protect my son, to tell him it is all going to be okay. Now, if my son was 21, that would not be so easy – it would in fact be impossible. I would not be the steward of his treatment, I would be an observer. I would have opinions and I would offer those, but ultimately, treatment choices would be his own.

Sitting there thinking about these men diagnosed in the prime of their lives, pre-technology (you know what I mean – smartphones and social media), I could only imagine how isolated they felt. I see it with my own son now, missing parties, sitting out of sports – but the idea of being a “young adult” and dealing with… changes to my appearance, my fertility, my social circle… nagging, frightened parents… late night musings on life and death. I give Matthew a ton of credit for leveraging his experience some 20 years ago and making a difference for the thousands of young adults (and older adults) today grappling with cancer diagnosis, treatment options and long term effects. Enter the Stupid Cancer charity, its instapeer app for peer matching, and annual event, CancerCon, which I was ready to register for on the spot.

While I enjoyed the hour long session for largely personal reasons (and not just because Matthew dropped an f bomb and made a George Costanza reference), it’s true purpose wasn’t lost on me – advocacy. Just as I feel pediatrics are an overlooked population when it comes to cancer research and clinical trials, the firsthand experiences of these two men have led them to the same conclusion about young adults. This is a tech savvy demographic that expects information – and yet, statistics show this audience is commonly under-informed about risks of treatment and clinical trial options. And then there is the double-edged sword of survival – survivorship (aka, all the really horrible things you deal with for the rest of your life as a result of beating cancer via toxic drugs and radiation).

As I looked around the room, it was clear these two men had commanded the attention and emotions of those sitting around me. Let’s hope their moving stories stay with those who can influence the direction of clinical research in order to bring quality of life and informed decision making to a very unique population that has a lot of life experiences behind them, and still a lot of living yet to do.

Jennifer Crowley is a contributing writer for the Partnerships in Clinical Trials US conference. When she is not working as a healthcare marketing and PR professional, Jennifer Crowley is mom to an eight year old son with cancer. His illness has largely driven her interests in patient advocacy, pediatric cancer research and personalized medicine. It's great to learn because knowledge is power! 




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