I have been a little quiet, a situation my sons called attention to. They’re good that way, my boys.
The truth is, I’ve got a lot on my mind. Trying to figure some stuff out, with a whole heck of a lot going on.
First and foremost is the hackathon, and I shall provide a detailed accounting of progress made thus far soon. In the meantime I have been learning more about this beast inside me, thanks to full genomic profiling by Foundation Medicine and Lucence. Both companies generously donated their services, as part of the group effort to come up with some therapeutic options for me. Thus far nothing actionable, but rather some intriguing details that may have a bearing on choices made.
I’m learning a lot, and am overwhelmed by both the interest and generosity of engaged parties–both individuals and entire companies. But it has also kicked me into thoughtful mode. Not a bad thing. Just a quiet thing 😉
Getting home from Barcelona was a bit of an adventure as our flight was delayed and it looked as if I would miss the connection in Zurich. However there were three of us traveling to Boston and when we landed in Zurich, they had a van waiting on the tarmac. We were zipped off to two passport checks (everyone running) and then through a tunnel under the runway to our waiting plane. Very James Bond.
There was no time to indulge in jet lag as I had a commitment the day after my arrival home. An awards ceremony, Xconomy Boston 2019 . I had been nominated in the Patients First category and was one of three finalists. It was an honor to be nominated but I also felt I was way out of my league. However the prospect of sitting at a table for the evening with my oncologist Alice Shaw and her husband Stan (I work with Stan at HMS)–this was reason enough be in attendance.
Well surprise, surprise when they announced my name as a winner.
It was a fun, fun evening out with two of my favorite people. Two days later I was in Amesbury for the annual Live It Up! LUNGSTRONG, hosted by Diane Legg and her husband Dave. Held at their charming Victorian in Amesbury, the party looked as if it might be rained out but the cadre of volunteers–friends of the Leggs and their three sons–kept the food and good cheer coming.
Diane, who has been living with lung cancer for more than fifteen years now, founded LUNGSTRONG in 2011. This grassroots organization has now raised over $4,000,000 (yes, four MILLION dollars) for lung cancer research. Diane is not only a dear friend, she is one of my personal heroes.
Fatigue slowed me down a bit for the next few days, but I finally had a window in which to start pulling together my new living space. And then a guest appearance at a town hall meeting for Foundation Medicine on Thursday followed by reception at Harvard Medical School that evening and then a presentation to an international gathering of YPO the following afternoon.
At a time in our lives where so many of my friends are retiring, I often feel as if I am just starting my career. The good news is I love what I am doing.
This week I drove to NYC will my friend Bill Burke for the opening of his show with Lois Connor at Fordham University’s Idiko Butler Gallery (September 23–November 13 2019). Good times. The following morning I was to speak again at Harvard Medical School so I caught an early flight back. Friday I had scans and that evening I began training for a new volunteer position with C4RJ–Communities for Restorative Justice. I am passionate about criminal justice reform and it will be good to get out of the cancer wheelhouse just a bit.
I flew to Philadelphia this morning, and tomorrow I will be sitting on a panel at Fisher Scientific’s Allentown Innovation Summit–participating in a discussion on decentralized clinical trials. Back home on Wednesday and in Boston again on Friday for my scan review.
When first diagnosed with lung cancer, I made a decision that I’d just keep walking–because most people die in a bed. Motion creates an arc rather than a point in time.
No lying down on the job for me. My goal is to arc/flame out.