scifiknitter

I have a second blogging gig these days. I'm now writing for lungcancer.net, a new website that is building a community resource. The organizers have reached out to several notable lung cancer patient advocates, and I am proud to also have been asked to write for their site. In April 2017, the American Lung Association sent me to Washington DC to represent New York State for their annual Advocacy Day project. Lung cancer patients, survivors, and caregivers from all 50 states gathered to go to Capital Hill and lobby our Senators and Representatives. We all asked for the same two things: increased funding for the National Institutes of Health, and quality and affordable healthcare for all Americans. We also had a heck of a good time. Here is a link to the post I wrote about my experience for lungcancer.net: Lung Cancer Advocates on Capital Hill: A Report on the American Lung Association's Advocacy Day "What is it like to lobby Congress? You want to make ...

On Saturday, March 4. 2017, Robert and I drove north to attend Elizabeth Dessureault’s funeral. Elizabeth was a leading light of the lung cancer advocacy community, and her death a week earlier had shaken a wide circle of people to their core, including me. When I found out that her funeral would be held in Cornwall, Ontario, less than two hours from my home by car, I realized that I had to attend to represent all those who had met her or followed her blog and Facebook posts. To encounter Elizabeth was to love her. Diagnosed with lung cancer only two years ago, she had a sunny disposition and a compelling story. In her first year of marriage to Dax and 5 months pregnant, she found out that she had lung cancer. She was able to go on chemotherapy and keep her baby alive, giving birth two months early to a little boy they named Jack. She had genetic testing of her cancer and discovered she had the ROS1 mutation. She went on to take targeted therapy, enrolled in a clinical trial, ...