2 0 1 2Apr11

Friends, Faith and the Future: My inspiring trip to the ADAO Conference

"We cannot tell the precise moment when friendship is formed. As in filling a vessel drop by drop, there is at last a drop which makes it run over; so in a series of kindnesses there is at last one which makes the heart run over."
-James Boswell


Debbie and I
Debbie & I finally meet!

Friends

I cannot remember the moment I became aware of other mesothelioma warriors around the globe, but, sometime in the last few years, my friendship base grew from a couple of people I knew from Boston to many people from all over the world—the United Kingdom, Australia, Brazil; the list goes on and on. A few in particular stuck out because of their fierce passion against this disease and what it has done to their lives and to others’ lives as well. “Turn anger into action,” they say. Sadly, many have passed, succumbed to this dreadful disease and mourned by people worldwide. Many are doing well, fighting hard, and making it known that they won’t give in. I was lucky enough to meet one of these brave women this last weekend when my husband and I attended the Asbestos Disease Awareness Organization’s annual conference in Los Angeles, CA.

Debbie Brewer is a tireless mesothelioma warrior in England. We became Facebook friends about 3 years ago and we both had been aware of each other for months before that. Debbie and I have a lot in common; I nicknamed my tumor Punxatawny Phil and she nicknamed hers Theo; we both sought out rather extreme mesothelioma treatments for our disease and we both had great success with them. The friendship grew through the last few years; I would cheer her on when she was giving speeches all over the UK about her battle and she would do the same for me when I was asked to share my story at various conferences. When I found out she was to receive the The Alan Reinstein Award for her commitment to education, advocacy, and support to the many people she comes in contact with, I was elated! It also meant that we might actually be able to meet after all this time since I planned on attending the ADAO Conference as well.

Plans were solidified for both of us and we were finally going to meet!

When I was given my mesothelioma diagnosis, I felt so very isolated. Here I was, a new mom and just diagnosed with a cancer that was not normally found in women my age; I was facing odds that seemed daunting at best. Through the next few years, part of my recovery was to get involved in the mesothelioma community and, at the urging of a couple of friends, I attended a conference in Washington DC put on by The Mesothelioma Applied Research Foundation (MARF). It was there that I met Linda Reinstein, who is the co-founder of the Asbestos Diseased Awareness Organization. As we talked through lunch, Linda kept telling me how important my story was. It was Linda who made me realize I had a voice, a story to share, and hope to give.

When Linda invited me to speak at the ADAO Conference in 2011, I jumped at the chance. She asked me to speak on the value of my life in dollars and tears; to speak about the cost of mesothelioma diagnosis, but not strictly monetary. It was this opportunity that started my advocacy mission. I got more involved with bringing awareness and even turned my yearly “Lungleaving Day” party into a fundraiser for mesothelioma research.

Debbie and I with ADAO founder Linda
From left to right: Myself, Debbie Brewer and Linda Reinstein

Faith

So as the end of March approached, so did the date for the ADAO Conference. My parents arrived to stay with Lily so Cameron and I could both go. Cameron knows how important it is to be a part of an organization like the ADAO and he looks forward to this event every year now; having his support means the world to me.

When we arrived, I checked Facebook to see if Debbie was in yet and when we should plan to meet. I’ll admit, I had butterflies in my stomach at the thought of finally meeting her. We agreed to meet in the lobby and we both rushed down; I got off of the elevator, took a few tentative steps into the lobby and found her; her fabulous red hair was the first thing I noticed. We both let out a little squeal and ran to each other. Finally, after all these years we were meeting and it was seriously like a dream come true for me. We hugged, took pictures and sat down together beaming. Just then, Linda arrived and we were all able to reacquaint ourselves.

Debbie, Cameron and I spent the afternoon together; Cams drove us around LA so we could do some sightseeing. We talked and talked, comparing stories, finding out that our stories were so similar. Debbie’s exposure also came from her father who worked with asbestos. We talked of losing so-called friends, gaining amazing new ones and how, when she was diagnosed, she had no one to look to. From that feeling, Debbie decided to become the person that others looked to. I had the same experience here through my own disease. We both are all about hope, fighting this disease with our entire being, but mostly LIVING.

When we got back to the hotel, Debbie and I stopped in the bathroom where we met a woman who was getting ready in there because her room was not open yet. We discovered that we were all there for the ADAO conference and she told us her story of how she lost her husband 9 years previous and, still to this day, the horror stayed with her. She asked how asbestos affected us and when we told her we were both mesothelioma survivors, Debbie 5 1/2 years, and me 6 1/2 years, the look on her face was priceless. Her experience with mesothelioma was horrible; for her to meet us by chance, two vibrant, thriving survivors, she burst into tears. She knew then, despite all her misgivings she had in coming to the conference, she was meant to be there.

This inspiration is exactly what Debbie and I both believe in and right there, in that moment, it made everything so right. I also met two other women at the conference who told me that my story inspired them and they made sure to share those stories with me. Debbie and I know things happen for a reason-- without our mesothelioma diagnosis, without Theo and Phil, we would not have each other. We would not know all the other amazing people that make up this small and tight knit community.

Survivors Debbie, Julie and I with ADAO founder Linda
From left to right: Debbie Brewer, Linda Reinstein, Julie Gundlach and me

I also got to spend the rest of the weekend with another amazing warrior, Julie Gundlach, who is a peritoneal survivor, and advocates from all over the globe. All of us came together wanting the same thing; a worldwide ban on asbestos.

The Future

As the weekend came to an end, Debbie and I knew our time together was too. I likened the experience to going to summer camp when you were a kid—you make fast, fierce friendships and, when you go home, you literally ache for these people again. Thankfully the internet makes the world much smaller. I can find Debbie on Facebook and we are able to visit through Skype. We made friends with people from Italy, Belgium, Brazil and, thanks to social media, we can still be involved.

It strengthens my resolve to work harder to make people more aware of mesothelioma, to show the world that this disease doesn’t mean a death sentence and to advocate the need to ban asbestos use.

I will continue to strengthen the friendships as we all continue join together on our journey. And for my next big trip? I think it’s my turn to go to the UK to see Debbie.



Here is the video of my speech from the 2011 ADAO Conference-- "The Value of My Life in Dollars and Tears"





Photos of the ADAO Conference are taken by Emily Reinstein and provided courtesy of ADAO.

Tags: ADAO, Asbestos, LungLeavin' Day, MARF, Mesothelioma, Mesothelioma Diagnosis, Mesothelioma Treatments

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About Heather

  • Wife of Cameron Von St. James and mother to Lily Rose
  • Pleural mesothelioma survivor
  • Treated by Dr. David Sugarbaker at Brigham and Women’s Hospital in Boston
  • Self proclaimed “Poster child for hope after mesothelioma” for those suffering from asbestos disease
  • Continues to live with strong faith, abundant gratitude and an unbeatable will to live each day

Read more about Heather »

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