The MCA BlogConnecting with others one story at a time
Four years ago, Heather went to her first Mesothelioma Applied Research Foundation (Meso Foundation) symposium. That first symposium left a lasting impression and changed her life. The opportunity to meet with other mesothelioma warriors, their families, caregivers, and medical experts in mesothelioma treatment and research had a positive impact. It was the opportunity to meet with people who know what a mesothelioma diagnosis means. These new friends quickly became family.
Heather refers to the annual Meso Foundation symposium as summer camp for mesothelioma warriors. One of her favorite sayings is mesothelioma is a crappy way to meet some really great people. I had attended other mesothelioma symposiums and knew the saying to be true; so, last year, after Heather came back from the annual Meso Foundation symposium all fired up, I knew I had to go. I was not disappointed.
I met many of the friends Heather had made at previous Meso Foundation symposiums. She has told me so much about them that it felt like I was meeting old friends, not a first introduction. It is a wonderful experience being surrounded by people who have an intimate understanding of what you are, or have had to deal with a mesothelioma diagnosis; it was therapeutic even.
Besides the opportunity to talk with others who are dealing with a diagnosis and the inspiration by those conquering the disease, highlights of the symposium for me included a caregivers only discussion panel that reaffirmed my beliefs and experiences in dealing with Heather’s mesothelioma diagnosis. There were also sessions covering current medical research, genetic studies and new clinical trails. Other sessions covered topics ranging from new patient information, a legal advice panel, conversations with Meso Foundation community members, and fundraising. It was an incredible experience.
This was my 4th time attending the symposium put on by the Mesothelioma Applied research foundation. As I look back over the last few years, I see how my role has changed and how I’ve changed, as well as how my thoughts of being a mesothelioma survivor have changed.
During my first symposium, I was very much a newbie and didn’t know what to expect. I felt a little nervous and out of the loop. I was new to this organization and what they did, so everything and everyone was new. The next year, I was more brave and, with one more year of survival under my belt, more confident. I started nurturing friendships that would grow over the next year.
My relationship with people who work at the Meso Foundation also began to grow. I knew without a doubt that I had a voice and a place. I was there to learn, to inspire and to help others who were in my shoes. My 3rd symposium, things really seemed to come together. I once again attended on my own, but was far from alone. I had made many new friendships through Facebook, had gotten to know Mary Hesdorffer from the Foundation so much better. With my blog, I have gotten my story of hope out to many, many more people than I ever dreamed of. It was at this 3rd symposium that Dr. David Sugarbaker received an award for Pioneer of the Year and I was so proud to be there for him, along with many of his other patients to cheer for him as he was given his award. The relationships that I had started in those previous years were cemented and I no longer felt like an outsider. I made it my mission to seek people out and smile, say hi, and make them feel welcome. I had changed from someone who attended to someone who was very much part of the community of what the Foundation is.
This year, I was beyond excited to attend. The main reason was because Cameron was coming with me. He would finally get to experience what I had for the last few years and meet the people I had told him about so many times. Plus, it was being held in Las Vegas! How could this be a bad thing? I was asked to be on a panel about the community. The panel consisted of 3 survivors, 2 of our spouses, and one woman who lost her husband just mere months before. It was such an honor to sit on that stage with those people and represent what the Meso Foundation is, and what it does for people like me.
A mesothelioma diagnosis is terribly frightening and isolating. Not much is known and a lot of what is out there isn’t great-- until you find a community; people who know what you are going through, who are fighting with you, and who are cheering you on. The Meso Foundation does this and so much more. Their commitment to bettering research and themselves is evident in everything they do, and stand for. The Board of Directors, and people who work there have the biggest hearts of anyone I know, all have been touched by meso in some way, either directly, or indirectly. Year after year, their dedication to the community is evident. I’m very proud to be a part of it, and will continue to put my support behind their mission.
You will find me in Washington DC, next year, for the 11th annual symposium, I’ll be on Capital Hill, asking for funding for this disease. I’ll be in attendance at the symposium to inspire others, mentor others, rekindle old friendships and nurture new ones. Not just that, but BE inspired by the many brave warriors, and BE mentored by those who have been where I am. I will continue to give back, just as much as I have been given.
Resources for Mesothelioma Patients and their Families
- Request a Free Mesothelioma Treatment Guide
- Connect with Top Mesothelioma Doctors
- Locate the Nearest Comprehensive Cancer Center