Tag Archives: LUNGStrong

Tough love for lung cancer

November is Lung Cancer Awareness Month. I have said before that I don’t do months. Lung cancer is weeks, days, minutes, seconds for me. Year round.

In November many of my fellow advocates devote a lot of time to raising awareness–the squishiest form of advocacy. This year I am seeing a lot of upbeat photos of people who don’t look for a minute as if they are living with a disease like lung cancer.

Passing for healthy has been one of my favorite party tricks. At the moment, there’s not a chance in hell I could pull it off.

So here’s the thing. I believe in positivity while also keeping it real. Really real. And the truth is, those pretty pictures are each of us at our best moment.

I don’t believe people care more about something like lung cancer when the message is that people are living. Yes–it is inspirational for our community. But the rest of the world needs to hear the other side. That even though anybody can get lung cancer, very few will survive it.

My friend Andy Lindsay died two weeks ago, almost two years to the day after he was literally at the top of the world. If lung cancer can kill Andy Lindsay, it can kill anybody.

You are aware of my current situation. Having exhausted all TKI’s for those of us who are ALK+, I am back to non-targeted treatments–infinitely less effective and with a greater range of side effects. My friend Diane Legg, diagnosed with lung cancer months before I was, found out two weeks ago that she’s got three brain mets–after sixteen years of her cancer staying confined to her lungs.

Diane and I remain exceptions–having lived far longer than anyone thought possible. But I’d be lying if I said it was getting any easier. Not only is cancer and continuous treatment beating the shit out of us, we each have become close to hundreds of people who have passed away. Wrap your head around that one.

So yes. Let’s stay positive and hopeful. But let’s also get it right–both out of respect for those who have died but also for the sake of those who are still living. We need more money for research and we need it yesterday. Because having an opportunity to get older if you are going to age out of treatment options is one hell of a bitter pill to swallow.

This girl’s busy

with the famous Janet Freeman-Daly

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.

Alice Shaw, Linnea Olson, Stan Shaw

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.