Finding Your Way

Expert Help in Navigating
the Breast Cancer Journey


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Alumnae Association of Smith College


Help on the Breast Cancer Journey
by Jane Falla

Elesa Commerse ’76, a meditation teacher, is the founding president of Forever Whole, a nonprofit created to alleviate the suffering of people with breast cancer. Commerse’s main advice: “A breast cancer diagnosis or treatment doesn’t define you. Let this experience inform you, motivate you, and somehow enhance your life.”

Why did you create Forever Whole, and what’s the significance of the name?

I created Forever Whole to help disseminate a DVD I produced called Finding Your Way. The name “Forever Whole” speaks to the fact that when something has been taken from us—even something as intimate as a breast—or two—there remains a unified field that we can inhabit and call home. “Forever Whole” conveys a core belief that there is a transcendent part of each of us that remains spotless, pristine, untouched, and unscathed, despite the things that happen to us. I experienced this firsthand with my mother, Evelyn Winslow, who died of breast cancer eight years after being diagnosed. Finding Your Way is dedicated to her memory.

Finding Your Way is divided into 11 segments, and experts offer nine hours of programming on everything from medicine to nutrition to yoga. Tell us a little bit about how you organized the DVD.

I wanted to offer something as comprehensive, meaningful, and well organized as possible, which is why I designed a learning system. I did focus groups with more than 100 survivors, asking them what they felt was missing in what was available to them. I asked these women what they would want to see in a project like this, and then I did my best to honor these women and the one in eight women who will receive a breast cancer diagnosis in their lifetime. The goal was to honor, empower, and encourage.

Finding Your Way is organized like a book with a detailed index. Because of the design, it relieves stress and saves women precious time when they are looking for vital information. Each segment demystifies and answers questions. It provides women with the assurance that the information they need is always available to them. Moreover, Finding Your Way takes an enormous burden off the newly diagnosed—that of sensitizing family and friends.

In your own experience with breast cancer, what was some of the misinformation you received, and how does your program overcome myths and misperceptions?

Probably the biggest piece of misinformation I received is that I wasn’t given any information about lyphedema [a swelling that occurs in the arms or legs when the lymph nodes are removed and fluid builds up]. I thought I couldn’t get it because I hadn’t had any lymph nodes removed. In my case, though, they actually did take 12 lymph nodes when they weren’t supposed to take any, and I only found that out after the lymphedema. Had I had known, I could have taken preventive measures. That was really tragic for me, because once you get lymphedema, you have it for the rest of your life.

Another piece of misinformation that affected me, along with dozens of women with whom I’ve worked, is not getting the full picture about reconstruction. Some women aren’t told that tissue expanders may not be tolerated. In my own case, I used my own tissue, but the reconstructed breast is two-to-three times larger than my other breast. The surgeon told me after the fact that they always make the breast bigger so they can more easily do revisions. By that, he meant more surgery. I had had six surgeries already and wanted to be done. As a result, I now have issues that I didn’t have before, such as back and shoulder pain.

One other big misperception, and Dr. Nora Hansen addresses it very well on the DVD, is that a lot of women feel compelled to remove their breasts even if they qualify for a lumpectomy. Twenty years ago things were different, but there’s enough science and longevity of clinical studies to show that there really is no difference now in terms of outcome.

What are five atypical tips to share with people diagnosed or undergoing treatment for breast cancer?

1) Take this opportunity to examine your life. Most of us are in denial about our mortality. Because we think we’re going to live forever, we never get to the really important stuff. This is an opportunity to see what’s working, what you can get rid of, and to do some letting go.

2) Don’t be fooled by initial perspectives. We have an automatic tendency to react, and that usually doesn’t get us to a place of absolute truth. Sometimes adjusting our perspective even a few degrees can give us greater clarity.

3) Take this time to learn specific relaxation techniques or to meditate to offload stress.

4) Find a reason to laugh out loud every single day. Every thought we have creates a chemical response, and the endorphins released from laughter are much like when a runner feels that runner’s high. Laughter also strengthens the diaphragm, which affects our lungs. Every time we inhale, we’re being nourished, and every time we exhale, we’re being cleansed.

5) Remember that so much of life is out of our control, but the main thing in our control is how we choose to respond.

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Suffering that can be avoided is to be avoided. We exist to alleviate suffering.
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