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Any materials on this website are not intended as a substitute for medical care. However, they can be used to formulate questions for discussion with your physician. Each medical condition is unique. If you have questions about your unique condition or about information you see here, please do not hesitate to contact us. The Cancer Resource Center of Mendocino County strongly advises that you consult with your physician on healthcare matters.

Culture Clash: Reflections on 13 years with breast cancer
by Stephanie Sugars

I’ve grown used to the double take. People who haven’t seen me for a while stop and look and often exclaim, “Oh-oh, here you are, and looking so well. You must be cured.” Maybe they remember hearing about my breast cancer diagnosis in 1991 or many recurrences since 1992 or my adventures with alternative medicine. My response is usually an honest, but enigmatic, “I’m so happy to be here and so happy to see you.” This diversionary tactic shifts the focus from my health to the other person’s life, which is usually so busy and full that s/he doesn’t even notice the diversion. Then it’s time to part and the other person is left with the impression that we both have busy, full lives. And I’m left shaking my head.

Because our lives are so different, I can’t even begin to describe what my life looks like. It isn’t busy and it isn’t full of familiar activities.   I don’t work and haven’t for nearly a decade since my late 30’s when I retired expecting to die soon from metastatic breast cancer. My life isn’t busy with work outside the home; nor am I like a stay-at-home mother, busy with other people’s lives. Most of my life is spent being - resting, sleeping and supporting my health. The doing part keeps me busy with daily health practices, twice weekly medical appointments and two or more surgeries yearly. I also do a lot of medical research into breast cancer and alternative treatments, but also into the rare hereditary cancer syndrome I have. I am not cured. I am not dead.

I’ve lived outside the mainstream for so long, I forgot what it’s like. Even when I worked it was in alternative businesses like Women’s Voices, Community Market and Trinity Herb, businesses whose values reflected my own – sustainable, grassroots and community-based. Entering the cancer-land thirteen years ago brought me into the depths of the medical-industrial complex and challenged all my values. The language, landmarks, metaphors and mentality were antithetical to me, a pacifist, green, whole-foods gal who found few common spirits in that strange land. There’d hardly been such a reluctant soldier in the war on cancer. Things have since changed in cancer-land, at least for those with breast cancer. Little pink ribbons adorn the stuff of everyday life – shirts, mugs, walk-a-thons and even little pink m&m’s – more importantly, they adorn our thoughts about life with cancer. It’s sweet, soft, fluffy and so survivable. Hospitals and oncology centers in Sonoma County have integrated complementary, holistic treatment. Patients are treated as people, not numbers or diseases. But living with cancer I still feel the edges – fatigue, pain, loss, difference, and death.

My biggest edge now is sustainability. In my private and business life, I value sustainability, the sense that everything is connected and what I do affects every other part of the whole. In my patient life, I’ve let those values slip more than once. How often do the ends justify the means? When the ends are the high stakes goal of staying alive, it’s difficult to hold a hard, moral line. Fortunately my treatment choices mostly reflect my values now. My weekly infusions are of mistletoe-derived Iscador, not chemotherapy. This less toxic, less expensive, health-supporting medicine has sustained me for 7 1/2 years. Years of cancer experience has taught me that not everyone has or makes the same choices as I do; many people suffer and die from this disease; there is no one right answer for everyone and my role is to honor everyone’s path toward healing and life, however that looks.

My work in grassroots activism started in childhood. Many family members were good role models and I came of age in Sonoma County in the 1970’s when it was hip to have causes. During the past thirty years I’ve participated in many social movements including alternative food & healing, environmental, anti-war and the women’s movement. What I learned locally, I’ve taken globally. Breast cancer isn’t my first or main medical problem. I got it not because of the food I ate nor the air I breathed, but because of a rare genetic condition that predisposes me to benign and malignant growths. Since birth I’ve grown innumerable lumps and bumps, many that have been surgically removed, others I just live with.   Four years ago the grassroots bug bit me again and I started an online support group for people with my disorder. We have members from around the world who share stories and information, helping one another through complicated medical mazes toward better health.

Living with cancer for years has taught me most about community. I thought I knew about community. I’ve lived in communes, worked in collectives and lived in one community, Sonoma County, for most of my life. I’ve answered phone calls from distraught friends and strangers recently diagnosed with cancer. Many of those people have died and become part of my “community of the dead.”   I am so good at giving to others, but these years have taught me how to receive. I’ve been brought to tears time and again by the kindness, generosity, prayers, and contributions to my support fund and the group of friends who’ve met twice a month for eight years to support me and my partner, Chico, through this. There are the patients who forge the way, learning from pain, disability and limitation, studying patience from the inside.

There are those who dedicate their lives to helping others and the earth to heal. There are the anthroposophists who introduced me to Iscador and have helped me build a healthy life outside the medical-industrial complex. And there is the whole of life – individual, social, environmental and spiritual that supports me and every being on this planet. Community is. My illusions of isolation can’t withstand the evidence.
Every morning I get up, look in the mirror and do a double take. Still here, looking well, still not cured, time to get about another day of healing. Not having a busy or full life, I’m blessed with the opportunity to slow down and appreciate what is around me. And, ironically, while others wish me health so I can lead a life like theirs, I find myself wishing them peaceful, simple and satisfying lives.

Stephanie Sugars can be contacted at 707-527-9336 or ssugars234@aol.com

She also wishes to mention Association of Cancer Online Resources, Inc. (ACOR), the non-profit group that sponsors over 100 free cancer e-mail lists including the Peutz-Jeghers Syndrome Online Suppport Group that she manages. They provide invaluable support and information for people around the world who are dealing with all types of cancer. Those isolated by geography or rare condition can find special help at ACOR. www.acor.org

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