Stanford cancer survivors share their advice, insights in new book

STANFORD, Calif. - Few chemotherapy patients would think to decorate their bald heads with stickers of bowling balls, or of bunny rabbits saying, "Wish you were hare."

"I always had stickers with a bald theme," said Julie Barrow, 52, whose life was first interrupted by cancer in 2001 and again in 2005.

The stickers, along with a pair of "good luck" Winnie-the-Pooh slippers, were a way for Barrow and her partner, JoAnn Semones, to make it through each day with a little "tumor humor." Semones writes about the quirky coping mechanisms she and Barrow devised in Learning to Live Again, a new anthology of stories and poems by and about cancer survivors that has been published by the Stanford University School of Medicine's Department of Radiation Oncology.

The Stanford Comprehensive Cancer Center will give the book to new patients to help prepare them for the tumultuous journey they face from diagnosis to treatment.

The book grew out of the Stanford cancer patients' participation in the cancer center's concierge services, which provide a spectrum of physical, psychosocial and spiritual support groups. Many of the book's contributing authors participated in the monthly "Writing Through Cancer" workshop run by Sharon Bray, EdD, author of the book When Words Heal: Writing Through Cancer.

The book also has roots in a quarterly newsletter written by and for Stanford cancer patients called Surviving. Pat Fobair, who worked as a clinical social worker in radiation oncology until retiring in 2003, oversaw the newsletter for 20 years.

"It was the newsletter that got us going; we knew we could do it," Fobair said. "The book was just a project waiting to happen."

The book - which started in 2003 with the working title This Can't Be Happening to Me! suggested by a breast cancer survivor who was raising triplets - features such chapters as "When the Doctor Said…," and "The Body under Siege."

Dedicated to all those who are dealing with the shock, anxiety, helplessness and fear felt when diagnosed with cancer, the book's pages offer insights on how to live while facing the possibility of death. In the poem "Life is Precious," Susie Brain, who was diagnosed with breast cancer in 2004, writes, "Every moment is important when life is uncertain. Take a trip; hike a nature trail or exercise. Listen to birds; watch clouds sail by. Read, relax, or even daydream."

As Charlene Gibson writes in "Welcome to the Club No One Wants to Join," the stories let newly diagnosed cancer patients know that support is available from "an amazing group of people, spanning all walks of life and ages, whose experience can help you."

Gibson, diagnosed with breast cancer in 2003, recalled how her reluctance to join a support group slowly melted away. "What really seemed to bother me was that everyone had a positive attitude, and I didn't. I was not planning on coming back [to the group], and then all of a sudden it was different. There is something special about sharing with someone who has had the same experience as you."

Now Gibson helps relieve stress for cancer patients as a massage therapist through the cancer center's concierge services. Patients will benefit from reading the stories, even if they never join a support group, Gibson said. "You are part of the group when you read the book," she said.

"This book is an inspiration for all of us," said Kathleen Horst, MD, assistant professor of radiation oncology. She noted that doctors often focus on the science of cancer, but the book is a reminder about the importance of what happens outside the clinic - the value of relationships with friends and families, laughter, new experiences and various expressions of spirituality and creativity. "This book represents all of that."

At a July 11 release party for the book, Barrow and about 30 other fellow cancer survivors and contributing authors gathered to thank Bray, Fobair and Holly Gautier, RN, director of concierge services at the cancer center, for believing in and supporting the writing program.

Funding for the book was provided by the radiation oncology department, along with a $5,000 gift from Ortho Biotech, a New Jersey biopharmaceutical company.

Individuals can purchase Learning to Live Again for $2 by calling Stephanie Edelman in radiation oncology at (650) 723-6852.

Brian Lee is a science-writing intern in the Office of Communication & Public Affairs.