Sarcoma Alliance Discusses Grief After Losing a Loved One

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The nonprofit represents sarcoma patients at a national conference of social workers in Boston this week.

Yvette Colon, Ph.D., psychosocial specialist with the MetaCancer Foundation

Yvette Colon, Ph.D., psychosocial specialist with the MetaCancer Foundation

When caregivers lose their loved ones, they also may lose the community that provided support to both. We must acknowledge this disenfranchised grief and make sure that we help caregivers on their continued journey.

The Sarcoma Alliance has created a section on grief for those who have lost loved ones to the rare cancer of bone and soft tissues, board member Suzie Siegel said today at a national conference of social workers.

Sarcoma got more attention than usual at the annual conference of the Association of Oncology Social Work this week in Boston when Doug Ulman spoke. The CEO of LIVESTRONG, based in Austin, was diagnosed with chondrosarcoma at 19 and, a few months later, with melanoma.

Because the great majority of cancer nonprofits raise money for research, he said, LIVESTRONG chose to focus on patient services instead. So does the Sarcoma Alliance, a national nonprofit founded in 1999 in Mill Valley, Calif., just north of San Francisco, Siegel said.

Charlie Lustman of Paia, Hawaii, gave a shout out to the Alliance while entertaining the social workers with songs from his pop operetta "Made Me Nuclear," about his experiences as an osteosarcoma survivor with a prosthetic jaw.

Siegel, a survivor of metastatic leiomyosarcoma who lives in Tampa, said she attended to learn about additional resources for cancer patients and to inform social workers about the Alliance's programs, which provide information as well as emotional and financial help to people affected by sarcoma.

Psychosocial specialist Yvette Colón, Ph.D., of the MetaCancer Foundation in Rockville, Md., said 528 people registered for the conference, the most ever. Her foundation assists people living with metastatic or advanced cancer.

Siegel talked to her about caregivers who get support from social workers, nurses, doctors, etc., in the hospital -- until their loved one dies.

"When caregivers lose their loved ones, they also may lose the community that provided support to both," Colón replied. "We must acknowledge this disenfranchised grief and make sure that we help caregivers on their continued journey."

To do that, the Sarcoma Alliance created a section on grief, with an article by Sue Embree-Davis, a licensed marriage and family therapist in Vallejo, Calif., specializing in grief recovery for both children and adults. She lost her son, Rich Embree, in 2003, just after his 25th birthday. His original diagnosis of epithelioid sarcoma had been changed to undifferentiated.

When grief is new, she suggests people get exercise every day, eat something at every meal, get a good night's sleep, and get together with friends outside the home. For more details, visit sarcomaalliance.org/grieving. Embree-Davis said she plans to do another article for grieving children, and the Alliance will add links to more resources.

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