My Journey to Being a Lung Cancer Advocate
I remember that day like it was yesterday. My doctor called to tell me that he had the results of my CT scan and that I had a cancerous tumor in my lung and I needed to come see him to start the process of getting treatment. The diagnosis was a rare form of lung cancer, called carcinoid syndrome.1 I was 34 years old with 3 young boys at the time.
Cancer was the last thing I was expecting to hear so I was initially in shock. If you or a family member has received a cancer diagnosis, you know exactly what I mean. Although in retrospect I had repeated bouts of pneumonia and severe flushing episodes and wheezing (common in carcinoid syndrome). After getting over the initial shock, I went into information gathering overload. While it’s good to be proactive to learn about your disease, it caused me to read about the worst case scenarios and this made me scared and it became hard to focus on anything. Atypical carcinoid tumors like mine have a 5-year survival rate of 50-70% and I didn’t like those odds.2
After my surgery (lobectomy to remove the lower left lobe of my left lung), I was told that there was no metastasis to lymph nodes and that my prognosis was good. The hard part was the recovery and months of rehab and pain treatments. I taught myself to think in terms of one day at a time, one hour at a time, one minute at a time. I was determined to get back to my regular routine, and I ultimately did. I’m forever grateful to my wife for helping get me through this while taking care of our 3 young boys. And I was changed forever and I saw my life in a very different way. I was more patient with my kids, more giving to my friends and family, and more kind to strangers. I started living a life of gratitude. After all, what more to be grateful for than to have survived cancer!
I had been working in business development at the Bank of Ireland, and decided I wanted to do something more meaningful, so I went to work for an oncology medical publisher to provide patient education materials to newly diagnosed cancer patients. I helped a lot of private practice oncology clinics and nonprofits get high-quality information to their constituents. I became passionate about helping others through the journey that I had just taken and met a lot of amazing people along the way. Twelve years later I went to work for one of my nonprofit clients, the National Foundation for Cancer Research as the Vice President of Development. I was now in a position to have a huge impact on funding cancer research! I met many committed cancer scientists and became known online and in person as the Cancer Research Evangelist.
For many years I was relatively quiet about my personal cancer experience. However, a few years ago when I became active on Twitter, I began to realize my role as an advocate and it was the natural extension of my wanting to share my story to hopefully help others. I have been so many wonderful people on Twitter who I subsequently met in person at conferences, meetings and events, or locally in the Boston area. I’m part of a group on Twitter that uses the hashtag #LCSM (for Lung Cancer Social Media) on all tweets about lung cancer. I encourage people to search for this on Twitter. I also started a blog called Cancer Research Evangelist that allowed me to connect with more people and share my passion for cancer research. I’m thrilled to contribute my voice to lungcancer.net and happy to connect with anyone who has questions or would just like to share their story with me. Connect with me on Twitter.
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