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Engrossing, fast-paced, fascinating, accepting: these are how I describe the bi-weekly #LCSM chats on Twitter. The acronym translates to Lung Cancer Social Media, and a group of advocates, patients, and medical professionals have committed themselves to hosting these hour-long discussions of important lung cancer topics. The official site: lcsmchat.com . The site has the next topic to be discussed and a list of questions that will be covered by attendees. There are also links to much other information of value: transcripts of past chats, lists of blogs, and many other resources. Newcomers to Twitter and to the chats are often confused about how to use Twitter and participate in #LCSM. I wrote a beginner’s guide on lungcancer.net to help more people take advantage of this great resource. Using Twitter for Connection and Lung Cancer Information: A Primer “ For one hour, patients, advocates, oncologists, surgeons, and pathologists discuss a selected topic. The group is warm ...

A recent post on a patient support site about the impact of cancer and its treatments on intimacy got a response from Karen Loss, an active lung cancer patient advocate. She said she appreciated the fact that I included a paragraph on how these issues may affect single people because this topic is only addressed within the context of partnered people. I asked her if i could interview her about how she has built a support network as a single person, and she said yes. Karen and I covered several questions, and she wrote great answers. We posted her interview in two parts: Building a Support Network When Your Are a Single Person with Lung Cancer: An Interview with Karen Loss “Literally. from the day I was diagnosed, I made the conscious decision to share my journey with my entire list of friends and family… I live alone, so I knew it would be up to me to create any support system I might want or need.” Building a Support Network When Your Are a Single Person with Lung C...

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 ...

 I dig into big issues at the  Free to Breathe  site from time to time that are the type you talk about one-on-one with a close friend rather than something you might talk about in casual conversation. (Although maybe anything related to cancer isn't a fit topic for casual conversation...) These are three recent posts of which I am quite proud. Some Social Security Disability Tips for Patients with Lung Cancer " If you are diagnosed with lung cancer and you are still working, one of your first questions will be “Are my working days over?” Everyone with advanced disease must face this, and even people with early stage disease can find themselves contending with permanent debilitating side effects from treatment." Scanxiety is Rea l! 8 Ideas for Coping with the Stress of Scan Time " A study published last year confirms what all of us already know: scanxiety is real for lung cancer patients, and it negatively affects our quality of life. You know it and I...

I continue to blog at the Free to Breathe patient support site, and help to build a supportive community for lung cancer patients, survivors, and caregivers. Here are four recent posts about issues of survivorship and support: Anniversaries, Cancerversaries, and Milestones of Treatment and Survivorship: " I opened my 13th bottle of Tagrisso last weekend, marking a full year of treatment with this very new T790M and EGFR inhibitor. It’s been a great year, full of love and adventures. I feel like celebrating, even though celebrating a milestone with a lung cancer treatment may not be everyone’s idea of a good time." Anniversaries, Cancerversaries, and Milestones of Lung Cancer Treatment and Survivorship Sharing Our Personal News About Lung Cancer " If you are a lung cancer patient or survivor who is getting periodic scans, you are guaranteed to have news from time to time. How do you share the news? Who do you share it with? What about bad news versus good ne...

May is Lung Cancer Hope Month. I am celebrating hope in my own way this month: by purchasing and processing a fleece. Making yarn from raw wool seems to me like an ultimate achievement, and it is one that has intimidated me. Last year at Maryland Sheep and Wool, my daughter Ana took the plunge, buying a gorgeous clean and subtly colored fleece from Raja Farm of Lincoln, MA. Later we met up with Clara Parkes of knittersreview.com , and we showed her the fleece. Clara was very complimentary, ooo-ing and ahh-ing in a most satisfactory way, and said that Raja Farm is renowned for its beautiful, high quality, and easy to spin fleeces. This year, Ana insisted that it was time for me to buy my first fleece. After we arrived at Maryland Sheep and Wool on Saturday May 6, we made a beeline for Raja Farm. Ana bought two fleeces and I chose my first fleece. Actually it’s a half fleece, but it’s still 2.5 pounds of wool, and it will keep me busy for quite a while. The fleece may have l...

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, ...