June is Science, Schmoozing, and Agoraphobia

If you're a fan of musicals (stop groaning), you probably know the song, "June is bustin' out all over" from Carousel. The lyrics talk of how, "you can feel it in your heart, you can see it in the ground," and buds, saplings and romping rivers. Makes you want to run barefoot through the meadow, or in my case, through the small, weed-filled park where I take my dog.

June is nearly over and I can't say that I've seen much of buds, saplings, and romping rivers, unless you count my visit to the Buckingham fountain in Chicago. I was at the annual meeting of ASCO, that's the American Society of Clinical Oncology, BIO, followed by the Biotechnology Industry Organization in San Diego, and most recently, and most recently, a meeting of the IOM, Institute of Medicine, titled, "Drug Development for Rare and Neglected Diseases and Individualized Therapies."

There were common features of all these gatherings. I attended interesting, if occasionally incomprehensible, presentations on advances in medical research, science and technology that hold the promise of getting new therapies to cancer patients, saving more lives and leaving survivors with fewer long-term effects. Lots of networking, networking, networking - aka, schmoozing; patient advocates and docs and researchers and drug company folks using these gatherings to share information, meet, and promote their cause. The exhibit halls at ASCO and BIO are like adult carnivals, complete with frozen yogurt and espresso. But heck, the vast majority of people in the cancer world, docs, nurses, social workers, advocates, and yes, those evil drug people, have the best intentions to improve the lives of people with cancer, and work very hard to make that happen. So who am I to question a crab cake hors d'oeuvre and a glass of pinot grigio. Finally, there are the crowds. ASCO has 35,000+ cancer docs from around the world! These meetings were a test for those, like me, who feel even mild anxiety from the crush of people, the occasional spilling of drinks, and rush for the carving station.

I came away from this month of meetings exhausted, inspired by a small number new drugs for rare cancers under development, and the potential, with advances in research technology to get studies done and new therapies for rare cancers brought to market more quickly. And I was sobered by presentations of research reporting the significant medical challenges that many long-term childhood cancer survivors face.

I couldn't finish without recognizing, with great sadness, the loss of two extraordinary advocates. Patty Delaney, associate director of the FDA's Cancer Liaison Program, died of ALL on June 2. Patty was one of my first mentors in patient advocacy. She was a great teacher, passionate advocate, articulate and had great style and knew good food.

Allan Goldberg was a childhood cancer survivor and went on to become Executive Director of First Descents, a group that sponsors kayaking and outdoor experiences for young adults with cancer. I didn't know him well, but his positive perspective and persistence in achieving personal and professional goals is model to all of us.

So, while I didn't see much natural light during the longer days of June, and it's hard not to be a melancholy at the loss of Patty and Allan, I do feel renewed to forge ahead, with the inspiration of all that Patty and Allan did for their fellow survivors, the possibility of saving more lives and and the partnership of my fellow cancer advocates.