Preface: With Arms Held Out Acknowledgments 1. Voices of a Forgotten Population A cheerful message of survivorship Denial, fear and popular perceptions The real story about metastatic breast cancer Where are the resources? Division in the breast cancer ranks What this means to you 2. Dread, Uncertainty and White-Water Rafting The future is always uncertain Your life is never the same Signs and symptoms Breast cancer in all its manifestations is an unpredictable disease Trust in the process 3. Seventeen Stories of Metastatic Breast Cancer What is metastatic breast cancer? Many stories, common threads Primary diagnosis: Stage IV Looking at prognosis Local recurrence Regional recurrence Distant recurrence or metastasis Bone metastases Lung metastases Liver metastases Other metastatic sites What now? 4. The Shock of Recurrence Getting the bad news Rivers of tears Three a.m. plans and the dubious future Where do I start? What do I do first? I do not want this dance 5. The Problem of Knowledge: Doctors, Information-Seeking and Statistics I want to know, but... Will I die, doctor? How long do I have? Doing it yourself Medicine is not magic-doctors are not gods 6. Medical Treatments and Choices An overview of medical approaches Drugs Surgery and radiation Standard treatments Applying standard treatment to your own medical situation You and your doctor: Finding a shared treatment philosophy Keeping current with new and experimental treatments Clinical trials: A closer look What's new? Improvements in conventional treatments The new targeted biological therapies A treatment controversy: High-dose chemotherapy Taking a chance on life: How people decide Reflections on treatment choices 7. Hope and Healing for the Rest of You: Complementary Therapies Purveyors of hope Medical disillusionment and the new holistic healing movement Doctors: A love-hate relationship Complementary therapies: A feeling of control and choice Complementary versus alternative treatments : An important distinction Stress, personality and metaphors of illness I created my own republic, putting myself at the helm Coping with emotions Help for depression and anxiety Dealing with the ups and downs of illness In the same boat: Support and self-help groups Curing, healing and being whole 8. Living with Side Effects and Symptoms Testing, testing...playing the waiting game Getting through chemotherapy Hospitalization Pain relief : On myths, undertreatment and persistence Living the patient role: I just hate to ask 9. Families and Friends Speak: It's happening to us, too. Scenes from a marriage : Cycles of remission and illness Talking about it: Problems in communication Love doesn't worry about looks Deepening of love Stories from partners: Things are back to normal Conflicting needs and priorities Who cares for the caregivers? Friends and extended family : Needs, kindness and fears 10. Light and Shadow: Stories of Remission, Work and Identity I am not busy dying Moments of panic Past-present-future: Changes in time sense Telling stories Seeking the possible Jenilu's story Work, identity and meaning Finding other interests 11. Final Gifts: Disease Progression, Hard Choices, Last Days No one is talking about what everyone knows Isn't there something else we can try? End-of-life dilemmas Hope and treatment choices The problem with doctors From holding tight to letting go Hospice and palliative care Final gifts: Six stories of dying Bob Crisp, talking about Ginger's death Gerry Wirth, talking about Cindy's death Chris Tribur, talking about Candace's death Scott Kitterman, talking about Mary's death Chris Leach, talking about Pat's death Glenn Clabo, talking about Barb's death 12. Still Here: The Anatomy of Courage Illness and the human condition Common pathways Accepting emotions : Holding on for the ride of change Allowing for contradiction , complexity and mystery Gaining control: Holding tight Seeking surrender and acceptance: Letting go Living in the moment: Paying attention Risk taking : Dancing with uncertainty and challenge Living dreams deferred: Priorities and time Reaching out: Connection and activism Laughter in the dark Keeping hope alive: Grace and determination Transformation: Reframing a larger landscape Identity: You are not your illness Faith, spirit and the search for meaning The anatomy of courage A. Profiles Kim Banks Lucie Bergmann-Shuster JB Boggs Caren Buffum Lisann and Leo Charland Glenn and Barb Clabo Bob Crisp (Ginger) Mary D'Angelo Bonnie Gelbwasser Nancy Gilpatrick and Terry Houlahan PJ Hagler Pam Hiebert and Sylvan Rainwater Scott Kitterman (Mary) Joleene Kolenburg Pat and Chris Leach Sharon and Lloyd Multhauf Barb Pender Barb Ragland Ellen Scheiner Jenilu Schoolman Bob Stafford Kathy Stone Sue Tokuyama Chris Tribur (Candace) Gerry Wirth (Cindy) Sandra Yandell B. Resources General information Financial and legal information and assistance Emotional support Research Alternative and complementary treatment Coping with treatment, pain and discomfort Dying and hospice care Breast cancer advocacy C. Common Drugs in Use with Metastatic Breast Cancer Financial assistance Investigational drugs Notes Glossary
