Ultimately, I ended up writing a play about my experience – what it is like to be with someone you love as they experience advanced cancer. The Actual Dance is how I describe this ultimate ritual, one that we will all one day experience.
The details of that journey as described in the play and as they actually happened are about the extraordinarily difficult decisions we had to make. What doctors to pick, where to go for medical treatment, and how to decide.
“These are not easy questions.” Is the line in the play. To put it mildly. Or, “I have a question. How do you pick a cancer doctor?” My instinct was to rush to a leading cancer center somewhere: Mayo Clinic or Memorial Sloan Kettering, or MD Anderson. Susan, on the other hand, wanted to go with a highly recommended local doctor.
As it turns out, I made the decision not to argue and to let Susan – the patient – “decide.” I tend to be proud of that fact. “Susan’s choice!” I exclaim in the show. Yet, in one of the famous post-show discussions, it became apparent that had Susan not survived, I would have second guessed myself for ever. Why didn’t we find the better treatment? Was there a trial or an experimental drug somewhere else in the world that would have saved her? And how would I possibly find that out?
It was overwhelming. In fact, and in retrospect my decision was a bit of a copout that worked out okay after the fact.
Over this past week-end I was privileged to perform The Actual Dance in Boca Raton, Florida before an audience of medical professionals, patients and founders of “ICare,” a non-profit dedicated to helping cancer patients and their families navigate cancer diagnosis and treatments and to find the best medical treatment in the world. It is an incredibly good idea that helps find the best possible treatment for the patient and supporting the entire family. And this is done through an innovative system of sharing the patient’s cancer tissue with researchers around the world for analysis and recommendations.
The meaning I derived from this – the impact on our journey—is that having an iTeam enables us to make decisions with the support of a group of experts who are working with us directly, in effect a private group of experts to support and guide us through the most difficult decisions of our life-times. Our story might have turned out very differently had her treatments not worked out so well, and I still hold my breath; or if we both had been so strong willed we ended up battling each other because we didn’t know what to do and our marriage damaged (or ended).
I am deeply appreciative of the opportunity to have performed The Actual Dance for this audience and was humbled by the deep appreciation for the show by audience. Cancer is Cancer and even with iTeams the fears and struggles of the entire family are universal. The Actual Dance gives voice to those and to the hope for the triumph of hope and love – no matter how it ends.
Click here to watch a video that describes iTeams and how they work.