Several weeks ago I had the opportunity to participate in a Congressional Briefing as part of the NCCR’s Cancer 101 and the Cancer Moonshot. Here are some photos from the (amazing) experience as well as video of the entire briefing. It’s a slog (not a brief briefing) but I must say that my fellow panelists were stellar and you may learn a thing or two. As for me, I simply did my best to represent the patient viewpoint.
Speakers appearing at the the National Coalition for Cancer Research Cancer 101 Congressional Briefing Series event: The Cancer Moonshot Initiative: New Frontiers in Cancer Exploration at Russell Senate Office Building in Washington, DC, on Monday, April 25, 2016.
Left to right are Wendy K.D. Selig, President of National Coalition for Cancer Research, Sandra Horning, M.D., Chief Medical Officer and head of Global Product Development at Genentech, San Francisco, California, Michael B. Atkins, M.D., Deputy Director of Georgetown-Lombardi Comprehensive Cancer Center, Washington, D.C., Elizabeth Blackburn, Ph.D., Nobel Laureate, and President of The Salk Institute, La Jolla, California, event moderator, Richard L. Schilsky, M.D., FACP, FASCO, Chief Medical Officer, American Society of Clinical Oncology, Linnea Olson, Lung Cancer Survivor, Participant in numerous clinical trials, Artist, Boston, Massachusetts; and Otis W. Brawley, M.D., FACP, Chief Medical Officer of the American Cancer Society, Atlanta, Georgia, at right.
The roundtable discussion focused on President Obama’s “moonshot” Initiative to galvanize cancer research and patient communities to achieve 10 years of research in 5 years (Alan Lessig/)
If you haven’t yet read When Breath Becomes air, Dr. Paul Kalanithi’s extraordinary book about his all-too-brief experience with non small cell lung cancer, you should. Once I picked it up I found it difficult to put down.
Part of what makes this book so special is that Paul was a physician–a neurosurgeon–and so perhaps had a leg up on most of us in that he was able to immediately distance himself from the disease with a dispassion that is difficult for a layman. I had to work very hard to not take my own lung cancer personally, but Paul was able to come to a place of acceptance/grace with remarkable speed, and this lends his telling a particular elegant universality.
When Breath Becomes Air was preceded by an essay by Paul in the NYT that garnered a huge response from readers, ultimately leading to a book deal. There was a lot of buzz in the lung cancer community prior to publication of When Breath Becomes Air, in part because some of my friends and peers were personally acquainted with the Kalanithis. Aside from the pre-publication chatter my own introduction to Paul’s book was this touching essay by his wife Lucy, which also appeared in the NYT. I kind of fell in love with Dr. Lucy Kalanithi after reading it and have been hoping for some time that I would have the opportunity to meet her.
Linnea, Lucy and Diane
Well a couple of weeks ago I got my chance, as the Harvard Book Store sponsored a conversation between Lucy and Neel Shah, an assistant medical professor at Harvard Medical School. The venue was the Cambridge Public Library and my friend Diane and I (in true fangirl fashion) got there super early with seats front and center. Better yet, before the event started I had returned to the lobby in order to refresh my parking ticket just as Lucy was arriving. She recognized me from social media and came right up to say hello and gave me a great big hug. Now I was smitten.
Once the event got under way, Lucy read some passages from the book, conversed with Neel for a bit and then took questions from the audience—many of whom were medical students. Some of the questions were of a truly diffuclt nature, yet Lucy was unfailingly warm, patient and kind. Afterward a long line formed for autographed copies of the book, and Lucy took her time with each and every person. A physician herself, I can only imagine that she brings the same care to her practice.
Read the book, and better yet, if Lucy Kalanithi comes to your town, go!
The New York Times devoted their Magazine on Sunday to cancer and I was lucky enough to have my story included in the online version. This is the second time I have appeared in the New York Times and no, I don’t know anyone who works there. However, I am an avid Times reader and in both cases responded to a request for reader’s stories. Each time I got back to the editors shortly after the request was made (important) and had a striking, high resolution image to accompany my story. The clipping on the left is from 2010 and Sadie Dayton took the photo.
For Sunday’s version, which you can see here, I included a recent headshot taken by my friend Daniel Mathieu. And happily for Daniel and myself (and lung cancer, which is why I do this stuff in the first place) we got top billing.
So my advice is to be on the lookout for opportunities to share your story with media and when they present themselves be ready (elevator speech and accompanying image) and don’t be shy. You might be just what they were looking for.
It’s been more than two weeks now but I’m still high on Lungevity’s National HOPE Summit. Some clever person in attendance coined the hashtag #thisishope which absolutely sums up what I have come to view as one big family reunion. This year we numbered about 300 survivors and caretakers. All with a common goal; doing something about lung cancer.
Dolio, Linnea, Bruno and Diane.
Leslie and Andy Trahan (
Striking this year were the number of young people in attendance—and of course the older I get, the greater the number of survivors who I look at and think, ‘you could be my child’. Absolutely unacceptable and something that really gets my panties in a twist. However, what these young survivors and their caretakers bring to advocacy is immeasurable passion, energy and optimism. I am also always incredibly moved by those advocates who have lost either a family member (sadly, sometimes a child) or a close friend to lung cancer but continue to fight for not only their lost loved one but all of us with this disease. Thank you.
It is never a good time to have lung cancer but with FDA approval of eleven different drugs for lung cancer since 2006, it is at least a time of increasing therapeutic options. And look at that picture of all the people who have lived for ten years past diagnosis (Diane and myself included)—again, hugely encouraging.
Survivors ten years and more out from diagnosis
And that first photo? Dolio, Bruno, Diane and I are all lung cancer patients/advocates (although you wouldn’t guess the patient part looking at the picture, and that is why I love it so). The four of us went out to dinner the final evening of HOPE summit. Our reservation had been mistakenly made for the following night and the only available table was outside and it was pretty darn chilly. Diane played the C card and upon hearing that we were all living with lung cancer, the manager was overcome. His mom had just been diagnosed with advanced breast cancer, and our smiling faces made him feel infinitely more hopeful. He ushered us over to perhaps the best seat in the house and then brought us this ridiculous (but oh so fun) tropical drink. It was a lovely and somewhat surreal ending to a fabulous weekend of learning/bonding. Thank you Lungevity and see you next year!