By Kathy LaTour

It is almost time to go home, and the women gathered outside the conference center want a picture together. They are from across the country, but they have come to share similar stories and feelings about coping with cancer. Today they are drawn together because each is in a stage of baldness after chemotherapy, a condition hidden at home but heralded here. This is one place and one weekend when bald is beautiful.

The 150 women have gathered at the Life Beyond Cancer retreat at Miraval Life in Balance Resort & Spa outside Tucson, Arizona, on Dec. 5-8 at the invitation of their oncologist or other healthcare provider. The women represent a number of different cancers, and thanks to grants from “Partners in Wellness” (which include a number of pharmaceutical companies) most had only to pay travel costs.

The women come to learn how to advocate for themselves on a personal, local, and national level and to learn more about their disease and how to live with cancer. What they take away is the power of understanding that comes from sharing, listening, and experiencing other women who are struggling with the same issues.

Life Beyond Cancer is one of a growing number of cancer “retreats” available across the country, each of which has a focus and a mission to address some aspect of the cancer experience.

The Life Beyond Cancer retreat was the creation of Robert Brooks, MD, a Tucson oncologist, who then contacted Susan Leigh, RN, a survivorship consultant, and Pamela J. Haylock, RN, both of whom were oncology nurses working with him on patient advocacy programs for US Oncology.
Dr. Brooks says he was motivated to create the retreat because, while oncology was doing a good technical job, it was not addressing healing as anything other than the physical.

“Cancer or any other life-threatening disease is clearly a wake-up call for most people,” Dr. Brooks says. “It is a time of re-evaluation of every aspect of life and all the elements that define the human experience. The Life Beyond Cancer retreat allows women the time and space to explore some of these questions and concerns.”

Leigh, a survivor of three cancers, saw a chance to reach women on a number of levels to create leadership in the cancer community.

“The retreat combines components of integrative care for practical and clinical use,” she says. “Women take this information back to their home communities as more empowered advocates.”

At the same time, Leigh says participants are experiencing the healing aspects of the setting, services, and activities offered.

For breast cancer survivor Susan Kotara from Austin, Texas, the retreat became what she calls a “lifeline for emotional and spiritual recovery.”

“When I finished chemo, I thought I was done with recovering from cancer,” Kotara says. “But I found I was exhausted emotionally—tired of trying to be brave. The Life Beyond Cancer retreat gave me the tools to deal with the emotional aftermath of cancer—the fear, anger, and vulnerability. It was an amazing gift to know that not only is it OK to cry, it’s healthy to cry. You don’t have to always be brave.”

Kotara, 42, came at the invitation of her oncologist. She says that in addition to a wealth of knowledge, she gained some insights into herself.

“The experience provided me with incredible emotional healing, a new lightness inside. The Native American Healing Ceremony reminded me of how powerful it is to do something as simple as one person pray for another and touch them.”
The four days offered everything from inspirational and humorous speakers to workshops on complementary therapies, sex after cancer, nutrition, lymphedema, the expressive arts, drumming, healing services, spirituality, fear of recurrence, community advocacy, and national advocacy. Wellness activities included yoga, meditation, tai chi, spirited walking, and desert hikes. In addition, participants were treated to a full range of services provided by Miraval and its staff, including spa services and participation in resort programs such as rock climbing and equine therapy.

When thanked by one of the participants, a Miraval massage therapist quickly said the staff looks forward to the weekend all year, knowing that they will offer massages and other spa services to some women who have never had this experience.

While at Miraval, women hear from experts in a number of areas of integrative therapy including Saskia R.J. Thiadens, RN, founder and executive director of the National Lymphedema Network; James S. Gordon, MD, founder and director of the Center for Mind-Body Medicine in Washington, D.C., and Judi Johnson, RN, PhD, the co-founder of the I Can Cope patient education course offered by the American Cancer Society.

“We have the top people in their fields who want to come to Miraval and work with these women,” Leigh says. “They can see how empowering women to take the message back to their community is the way grassroots efforts evolve.”

Indeed, Leigh lists the individual accomplishments of past Miraval participants, including the two women who started a program to provide materials to newly diagnosed breast cancer patients, another who meets regularly with her oncologist about patient issues, and others who work in their communities in support capacities or by speaking in public about issues of importance to women with cancer.

“Patients are asking, ‘What else can I do?’” says Dr. Brooks. “Miraval is a time to get away, be with yourself, become actively engaged, and create your own personal program for self-care.”