by Julieann Selden
A sarcoma diagnosis is often as isolating as it is scary. Because of the rare and aggressive nature of the disease, patients are typically thrown into nerve-racking medical situations that are hard for others to understand. The physical, mental, and emotional challenges that sarcoma brings are unique and overwhelming.
When Karen Wyckoff was diagnosed with sarcoma in 1997, she felt alone in her experiences. Her prognosis was grim, and few people knew much about her cancer. In 2001, she founded Rein in Sarcoma with the vision of creating a sarcoma community- a place where patients, family members, friends, and neighbors could come together to support and encourage one another. The first event had over 250 people in attendance and raised over $10,000 for sarcoma research. Since that time, Rein in Sarcoma has grown dramatically, always keeping the need for community support in focus. Today, events, social media, and support groups are all available to bring survivors and family members together to help everyone feel less alone.
The Party in the Park each July is always a great place to connect with other families that have been affected by sarcoma. This year, over 400 people attended the picnic for patients, family members, and medical professionals. Everyone joined together to support each other and the cause. Survivor Annette Bonaventura loved the supportive community feeling at the event. She said, “being there made me feel like I was part of a family. It made me feel like I’m not alone in my fight in this very rare, aggressive cancer. I feel blessed to have met such amazing people.”
Ken Selden also made new friends at the event and was amazed to find how much they had in common. He continued his friendships beyond that night and hopes to stay in touch with many that he met. He said, “I went to dinner with two sarcoma survivors and was impressed that, despite the differences in age and background, the commonality of our cancer formed an amazing bond.”
Online and in-person support groups can also provide understanding for those affected by sarcoma. Annette is very active in social media groups, including being a moderator for the Sarcoma Sunflower Brigade Group on Facebook. She even credits online support for improved medical outcomes. She said, “when I was first diagnosed, I was not going to do my surgery, but then a lady that I met online had the same surgery. I was so scared, and she was able to talk me through it. She came up to the hospital to see me after my surgery, and now is a good friend of mine. I probably wouldn’t have had the surgery if it weren’t for her. She told me what to expect, what to get ready for. No one at the hospital could prepare me in that way.”
Lynn Von Korff also found a new level of support online. She says, “During six months of treatment, I didn't meet anyone with sarcoma. This made it hard, at times, to imagine surviving… After treatment, I posted my story to an online sarcoma support group and heard from survivors who shared my high grade UPS diagnosis--some with tumors as large as mine. They gave me hope. Now, three years post-diagnosis, I try to support others--and that helps me too.”
Lynn’s husband, David, discovered friendships and encouragement by attending Gilda’s Club in the Twin Cities. He says, “having a family member with cancer changes family dynamics and changes your relationship with people outside your family. At Gilda's Club, I attend a weekly support group made up of people who have a family member with cancer. They understand what I am going through and I understand them. Nobody else understands in quite the same way.”
While sarcoma can often feel lonely, bringing survivors and family members together lightens the load as empathy is shared. Since the early beginnings of Rein in Sarcoma, much progress has been made in creating a supportive and understanding community. While it cannot erase the devastating effects, building relationships is an important part of coping, surviving, and thriving through the challenges of sarcoma.
Julieann Selden is co-editor of the RIS Monthly Update as well as her own blog, Contemplating Cancer.