Please note: This article is from the Mindful archives, and was written in November 2009.
In the spring of 1995, when she had been teaching Mindfulness-based Stress Reduction for eleven years, Elana Rosenbaum was diagnosed with non-hodgkin’s lymphoma. Her cancer led her to many arduous courses of treatment, including a stem-cell transplant, and brought her to the brink of death. It also brought her deeply into the practice of mindfulness and made her one of the most sought-after teachers of mindfulness for cancer patients.
Rosenbaum’s 2005 book, Here for Now: Living Well With Cancer Through Mindfulness, documents her experience and provides guided exercises to help patients live with cancer rather than suffer from it, and to become participants in their care rather than observers. She is currently working on a book that reflects what she has learned over the past few years teaching patients and clinicians and doing research on the application of mindfulness in hospital settings.
“When I was diagnosed with cancer,” Rosenbaum told me, “it was a great shock, because the thought was that if you meditated and ate right, you wouldn’t get sick, and in my crowd I was the first one to get a serious illness. We used to often say, ‘This too shall pass’ around the stress-reduction clinic, but we weren’t usually talking about human life itself. I made up my mind then to live what I had been teaching. I already was to a certain extent, but the diagnosis really tested my ability to follow through on that.”
Rosenbaum teaches patients a range of mindfulness meditations, starting with breath and branching out to include sounds and sensations, a body scan, and loving-kindness. She feels it’s important for patients to transform their experience of pain by understanding the simplicity of sensation. While she was initially concerned about how very ill people would relate to a body scan, she now finds it essential. “I thought they might experience their body as betraying them, but I discovered that the body scan is a very effective way to develop a friendly relationship with what is happening.” A selection of her guided meditations can be heard at www.mindfulnessforcancer.com and CDs of her instructions can be purchased at mindfuliving.com.
Rosenbaum feels mindfulness should be part of the curriculum in medical and nursing schools, since in her view the understanding of the mind–body connection is becoming pivotal in medical treatment. It would also be helpful, she says, for people in health-care professions to have short periods of time in their offices when they regularly practice mindfulness, and ask others to come join if they like. She would also like to train volunteers who would be willing to sit with patients in different medical settings and practice mindfulness. She has been traveling the country training nurses, occupational therapists, psychologists, social workers, and other members of the caring professions, including some from the military. The programs are arranged by PESI HealthCare, an organization that provides continuing education credits to nurses and other health-care workers.
Susan Bauer-Wu, an associate professor in the department of adult and elder health nursing at the Emory University school of nursing in Atlanta, will join Rosenbaum to conduct a program for health professionals caring for people with life-threatening or debilitating diseases. Called “Meeting Suffering: Clarity and Calm in the Care of Serious Illness,” it will run from October 9 to October 12 at the University of Massachusetts at Amherst. The program is offered through Oasis, an institute for mindfulness-based professional education and innovation run by the Center for Mindfulness.
After she received her own diagnosis, Rosenbaum underwent eight chemotherapy treatments. She kept teaching mindfulness classes at the stress-reduction clinic at the University of Massachusetts Medical Center, and interspersed the chemotherapy sessions with mindfulness retreats. “Going to the retreat center during the treatment period really helped me retain balance, go with what was happening, and not resist what I could not control,” she says. “The hardest thing for patients is to meet what arises and genuinely practice, which means surrendering, letting be, and noticing where your attention rests so that you can be skillful in directing your attention. You have to be willing to receive. There is a ton of receiving, as well as some giving.”
Based on her experience, Rosenbaum encourages patients to “receive” what is occurring rather than reject it. Directly engaging the experience of the disease and all that surrounds it makes it possible to not identify with the disease. It’s hard for any of us to hear this kind of advice—experienced meditator or not—when we are diagnosed with a serious illness, but hearing it from Rosenbaum makes it more believable, since she has a tremendous depth of experience as a cancer patient.
Five months after she finished her chemotherapy treatments, a scan revealed that the lymphoma was becoming aggressive and growing again. During the stem-cell transplant treatment that followed, she contracted pneumonia. Friends said she looked ghostlike, and indeed her lungs had filled with so much fluid that she nearly died. The doctors were surprised at her ability to retain respiration with such stress on her lungs. Rosenbaum says she thinks it’s possible that “my ability to quiet the mind, and just be there breath by breath, without heightening or contracting in response to what was happening, allowed me to breathe better. Without mindfulness during that period, I actually believe I would have died.”
Rosenbaum recovered and was cancer-free, but eight years later, around the time of her sixtieth birthday, Rosenbaum was on a loving- kindness meditation retreat when she felt a great deal of pain. A mass had developed near her colon that needed to be surgically removed. And this year, fourteen years after the original diagnosis, a small tumor was discovered in her breast, which was eradicated with low-dose radiation. “For many people, cancer has become a chronic disease,” she says, “so it’s really important to learn to live successfully with uncertainty. It doesn’t have to be at the forefront, but it does need to become a completely accepted part of life. Then, when something does occur, you can move with all the different thoughts and feelings and sensations and relax with procedures, rather than fight them. Being able to do that has been just wonderful for me.”
In late 2001, Rosenbaum gave up teaching a regular round of classes at the stress-reduction clinic at the University of Massachusetts and began focusing on patients and caregivers through her psychotherapy practice and a variety of other venues. For years, she taught mindfulness at the Dana–Farber Cancer Institute, a leading research institute affiliated with Harvard. Rosenbaum feels the fact that she had been a patient there lent her a lot of credibility with patients during times of stress. Our native skepticism makes it harder for us to listen to someone teaching us from the outside-in, Rosenbaum says, so “it’s meaningful for patients that I have cancer and know it intimately. Cancer changes your life. There are suddenly lots of doctor’s appointments and trips to hospitals. Cancer scares you. When you enter a clinic, you see pale, weak people who have lost their hair. You know you could die. The fact that I’m alive and that I talk about the experience calmly and matter-of-factly inspires people, but I do not identify myself as a cancer survivor.”
One of her most important campaigns now is research into applications of mindfulness with cancer patients, which she does in partnership with Susan Bauer-Wu. Results of a successful pilot study with patients undergoing stem-cell treatment were published in the journal Integrative Cancer Therapies in June, 2008. Based on that success, Bauer-Wu received a National Institutes of Health grant and is currently leading a three-year study involving 280 patients, in which one group receives mindfulness-based training, another group has standard care augmented by sessions with an oncology nurse educator, and a third group receives standard care. Rosenbaum works as an advisor for the mindfulness instructors.
When teaching professionals, one of Rosenbaum’s main emphases has been helping people—often nurses, who are very enthusiastic about this work—to understand that they are facilitating, not fixing, and that mindfulness needs to be translated to patients in a way that allows them to appreciate its real nature. “Since mindfulness is such a big thing these days, many people have heard of it but they automatically think of it as a technique, rather than a way of being. You need to embody it for people and find the words that will resonate for the particular patient you’re working with. They need to understand that a technique—stopping and focusing—is involved, but that it goes much deeper. A technique is mechanistic, but to really live with a practice, to encompass it and embody it, it can’t be about doing. It has to be about non-doing, connection, and compassion.”
“I am passionate about this work,” Rosenbaum says at the end of our conversation. “Cancer is not something that any of us would ever want to have happen to us, but it can be a tremendous opportunity to look at some of our conditioning. It can also be an opportunity to look deeply and make amends for some things we don’t like. We can come into a greater sense of peace with ourselves and with others.”