When ABC Survivors first started in 2005, I was on a quest to find other young adults like myself. I was wrestling with lack of function and pain in my arm, and I knew that there had to be other people out there who had successfully dealt with limb salvage surgery and the fears that come with a sarcoma diagnosis.
I spent hours and hours searching for people online. I went to all of the major cancer websites and sent personal messages to sarcoma patients and survivors, begging them to write to me about their experiences and to help me navigate my new life. A few of those survivors came alongside me and helped in the search. Very soon, we realized that we were gathering knowledge that could benefit other people.
And so this site was born. Many of our very valuable members were recruited, slowly, with much effort. Some of them were barely willing participants – at first. It was almost like we had to sell them on the idea of such a specialized community of people. Then they realized just what an awesome community this really was, what an opportunity it was to connect with others who really understood where they had been.
I cannot begin to describe the effect that this community had on my life. These people have been my inspiration, my teachers, and my students. There were many late nights spent chatting about treatment options, clinical trials, and relationships changed by the threat of death. We discussed the worst kinds of pain and the best kinds of joy. We LAUGHED and laughed hard about things that others would never understand – our need for anxiety meds, our inability to accept what was happening to us, our bizarre interactions with people who could not understand our appearance, our disabilities and hang-ups.
I flew to California, went to camp in Montana, and drove to upstate New York to meet friends from this group. We shot silly string at each other and slept in bunk beds beside each other wearing glow-bracelets. There was the time when three of us spread out on my living room floor sending cards to others in the group who were suffering. One night, an ABC friend came from out of town, and we sat side-by-side on the couch, both logged into a “live ABC Chat,” drinking wine and laughing while we typed. A couple years later, I would drive six hours to a memorial gathering and cry for that same friend. Today, stunning pictures from that journey’s sunrise hang on my walls.
It was impossible for the few of us who started this site to maintain that same level of energy forever, the energy that it takes to recruit new members and to find all of the resources that might help today’s patients in their journeys. Several of us needed additional surgeries, had recurrences, and dealt with late effects. We were joined by new friends who made their own special contributions, but over time our group has become less active and engaging. And many of our lives have become full of other things, new and happy things.
And so this site will now become an archive, a legacy, a snapshot in time. It is a gift from many people who are still living, and some who are no longer with us. I hope that the site will be useful for visitors who come along looking for hope, looking for the silhouettes of survivors ahead of them. Because there ARE survivors of this disease, people who have found and embraced a “new normal” even with disabilities, pain and recurrences. There are even young adults whose lives were completely interrupted but have now regained momentum and joy. And their stories here are relevant, because bone sarcoma treatments have changed very little over the years. There is much hope to be found here – take a look around! You’ll find 30-year survivors, miracle-pregnancies, and surprising happiness.
If there is one request I leave to the future patients and survivors who visit this site, it is this: understand your power. People with sarcoma are rare. It is hard enough for us to get through our disease and move on. It would be easy to do something for a general cancer cause every now and then and think that we have done our part. But your power – and my power – lies in our ability to increase sarcoma awareness and research. If we do not do something about this disease, all of the people who come after us will deal with the same brutal and often ineffective treatment methods that so many of us have endured for the last 30 years. The future generations deserve better.
So if you want to do something for a cancer charity, consider advocating and donating to sarcoma-specific research. I personally recommend the Liddy Shriver Sarcoma Initiative, because I know that nearly 100% of your donation will be used for the best sarcoma research studies, wherever they are undertaken, and will not be used for fund-raising or salaries or hospital overhead expenses.
It is a shame that the very patients who struggle with this disease are the ones who are left holding the banner to cure the disease.
Then again, it’s a powerful opportunity.
Much hope to you and yours,
Founder, ABC Survivors