"What's it like to be told you have cancer?" I asked a friend recently. She told me she was shocked to have received the news, and that this shock quickly gave way to a seemingly endless string of questions. How did I get cancer? What's the best treatment? What will my care be like? What will the rest of my life be like?
As we talked, I learned that getting her the best care possible, although important, wasn't the only thing she needed to survive. An equally important need was the peace of mind she regained when her doctors, caregivers and loved-ones helped her tackle her unanswered questions.
Addressing the questions and needs of cancer patients, like my friend, is the primary aim of the web-based Ernest and Isadora Rosenbaum Library at Stanford's Center for Integrative Medicine.
Recently, I had the opportunity to talk about the library with the center's medical director, psychiatrist David Spiegel, MD. Spiegel first came to know the late Ernest Rosenbaum, MD, through Rosenbaum’s work at San Francisco's Mt. Zion Hospital. Rosenbaum treated cancer by addressing the patient as a whole – considering not just patients’ physical needs, but their emotional ones as well – and, at the time, his approach was groundbreaking. He wrote Everyone's Guide to Supportive Cancer Care, Everyone’s Guide to Cancer Therapy and The Inner Fire decades before such support was recommended by the Institute of Medicine in its report, Lost in Transition, long before the National Cancer Institute had an Office of Cancer Survivorship, and before palliative care was widely talked about.
When Spiegel opened the Stanford Center for Integrative Medicine in 1998, Rosenbaum brought his cancer supportive care program to Stanford. There, Rosenbaum and colleagues gave and recorded talks and penned articles that address the many scientific and emotional aspects of cancer care.
Rosenbaum bequeathed his writings to Stanford when he passed away in 2010. Volunteer Vahe Katros did the hard work of bringing this material to the web, donating hundreds of hours to bring the website to life. “Vahe represents the best in those who volunteer to help cancer patients, and he shows how we can all help one another,” Spiegel said.
Visitors to the online library will find information on such things as coping with cancer, sources of support, the value of forgiveness and the role of creativity - "topics [that] Rosenbaum selected due to his being personally being involved in the struggles of thousands,” Spiegel explained. The library contains excerpts from Rosenbaum’s book, The Inner Fire, and will be expanded in 2016 to include writings from his unpublished final work and additional content.
More from my conversation with Spiegel:
What are some of the common needs that people have when they’re first diagnosed with cancer and how do their needs as a patient change over time?
People need a compass, a way of understanding what is left of their life. They go from living as though life would go on forever to fearing that life, as they know it, is over. They need to understand what their cancer means for them, their family, their ability to work and live life.
Our research center focuses on stress and trauma, and the diagnosis of cancer usually provokes a similar post-traumatic stress response, as patients grapple with a new reality. Ernie understood that how a patient first responded could become cemented into place over the long term.
He was sensitive to the first 72 hours, or as he would say, the “Oh my God moments,” and he believed in turning trauma into a teachable moment. Rosenbaum lived with two cancers and heart disease, and lost his beloved wife of 60 years to cancer. We hope that a visitor to our site connects with someone who walked the walk.
From your perspective, why is the library so important?
It combines information about cancer with wisdom about living. Visitors to it can sit in on Ernie’s consultations to those fortunate enough to be his patients. They can acquire information about cancer, get help making treatment decisions and learn how to live in the face of the fear and discomfort that cancer provokes. He and his collaborators are wise guides – realistic and encouraging.
How does it differ from other online cancer resources?
Ernie’s career involved more than 20,000 patients. He was deeply steeped in best of cancer care and the living reality of dealing with cancer and its treatment. He was realistic about the limits of treatment, and passionate about helping his patients and thousands of others cope with these limitations. He began writing and collecting the work of others during a time when cancer was believed to be a death sentence. Ernie and his co-authors combined medical information with realistic encouragement about how to live life under the shadow of cancer.
Tell me more about the Rosenbaums: What sparked their interest in improving the care of cancer patients and how did you start working with them?
Ernie told us that initially the books were written based upon stories brought home by his wife Isadora (Izzy), who was an oncology nurse at UCSF. At the time, a patient would learn they had cancer in a short discussion with a doctor. It was Izzy who handled the rest. That was common – the unsung heroes of the cancer experience were folks like nurses who had to deal with the emotional reality of the trauma of having cancer. Ernie saw this and decided to devote his life to writing books and publishing information that addressed dealing with living and dying with cancer.
The great existential truth is that we’re all in this together, that emotional and social support help us all, and he understood that. His legacy is for our benefit. The work is ongoing, and if you visit the site and find some value, please let us know. “Just the good news,” Ernie would say when he picked up the phone. But he gave us all the news, and we are much the better for it.
Previously: Looking at cancer as a chronic illness, Emotional, social support crucial for cancer patients and Stanford psychiatrist David Spiegel's path west
Photo of David Spiegel by L.A. Cicero; photo of Ernest and Isadora Rosenbaum courtesy of the Rosenbaum family
