Bone Marrow Transplant Group Launched in Partnership with Gilda's Club Madison
Madison, Wisconsin – Every person experiences life-changing events that serve as markers in time. These lines in the sand, like the birth of a child or the death of a parent, divide life into two pieces: before and after. For cancer patients, survivors and their families at the UW Carbone Cancer Center, these events often revolve around a cancer diagnosis or treatment.
To help cope with this reality, the UW Carbone Cancer Center offers support groups to help those affected by cancer connect with others who have shared a similar journey.
On July 3, 2013, Ray Jackson received a bone marrow transplant at the UW Carbone Cancer Center to treat his acute myeloid leukemia. A complete stranger gave Jackson a new immune system – one that will hopefully keep the disease from ever returning. But it has not been without complications.
"Some days I feel just fine and have the energy to do things I normally did before the cancer," he says. "And some days it's difficult just to get around."
For patients who have received an allogeneic bone marrow transplant (when stem cells come from an outside donor), fatigue is an all-too-common symptom of the body recovering from the shock of this procedure, and it can last for years.
Formation of a New Support Group
To help adjust to life after cancer and his transplant, Jackson joined a new support group at Gilda's Club Madison specifically for patients who have received allogeneic bone marrow transplants. This new support group is a joint effort between Gilda's and the UW Carbone Cancer Center.
Anyone who has had the procedure or is planning to undergo it can join, even those who may be years removed from their transplant. Topics revolve around any aspect of the transplant – whether it's the process of finding a donor or the impacts of chronic graft versus host disease (GVHD), a condition whereby a patient's own body is attacked by the transplanted immune system.
While the group has only met a few times, Jackson has already felt the immediate warmth of shared experience. "It's been eye-opening to meet people at different stages of recovery to know that I'm not alone" he says.
UW Carbone Cancer Center oncology social worker Kristin Scheeler, OSW-C, the group's facilitator, believes this kind of camaraderie is beneficial to patients.
"It's important to feel validated that these experiences are not unique," she says. "We all want to be around people we have something in common with, and disease-specific groups like this can help achieve that goal."
"It's also a great opportunity for members to share tricks and tips that have allowed them to cope with life after a transplant," Scheeler adds. Among her usual work with bone marrow transplant patients, Scheeler formalized UW Carbone Cancer Center pre- and post- transplant evaluations to help make sure patients like Jackson have the support systems they need to find stability and comfort after such a life-changing event.
Jackson is beginning to find self-compassion to live with the frustrations he has about the pace of his recovery. "I'm learning to be ok with being angry and disappointed," he says, "without being angry or disappointed in myself." Sharing his experience in the support group allows for that experience to be validated, while bringing windows of understanding.
"A positive state of mind comes from being able to relate to others in a meaningful way," says Scheeler, about building rapport in this type of group setting, "not just for patients, but for all of us."
Through it all, Jackson has found another feeling: gratitude. "I'm fortunate to have found a transplant match and to have not had to deal with any serious GVHD," he says, "and I'm thankful to my doctors, the hospital and all staff for making the transplant possible. It is only because of the transplant that I am alive today. Of course it has been difficult, but that doesn't make it all a negative experience."
Date Published: 10/27/2014