Back in 1996, about six months after my diagnosis and medical treatment for breast cancer, I started communicating with Bonnie Bedford, another survivor of breast cancer who lived in California. [Cecilia's note: Bonnie actually lived in Vancouver, British Columbia, CANADA] Bonnie had started a website about alternative medicine and breast cancer, called "The Amazon: Alternative Therapies For Breast Cancer" (A little history: the Amazons were warrior women in Greek mythology).
When I first visited Bonnie's website, it was like finding an oasis in a desert. I remember tears coming down my face. You see, I had gone to two oncologists and one radiation oncologist. And I went through agony for three weeks until I finally decided to opt for no chemotherapy and no radiation. Then I turned to an alternative medicine practitioner who also was a disappointment. It was about this time that I found Bonnie Bedford's site. And I felt a great relief.
At that time, the world of medicine seemed very sure about their diagnosis and treatment for breast cancer. But the survival rates were still the same as they had been for the past 50 years.
By 1997, Bonnie had also started an e-mail listserv with the purpose of encouraging women to support each other through the journey called breast cancer. Bonnie asked me to join Amazon-L back then, but I did not know much about listservs at the time, so I hesitated.
Bonnie Bedford died not long after, but her legacy lived on. Little did she know that she had opened a Pandora's Box to a bunch of women who were dedicated to going, through research and study, where "few women had gone before."
When I joined the Amazon e-mail group in 1998, I felt like I had finally found a group of women with a mindset much like my own. We were not happy with the status quo on breast cancer treatment. We shared many questions about treatments. And all of us, through the years, had researched numerous topics about breast cancer.
We also came from different walks of life and varying backgrounds. Each member contributed what they could to the group effort: research, writing, attending conferences and reporting back. But mainly, we used ourselves as guinea pigs as we tried to stay alive.
For instance, we questioned a lot of controversial topics: Diet and nutrition, lymph node biopsy, needle biopsies, chemotherapy, radiation, and hormone replacement. We explored a lot of little-mentioned medical studies that somehow got buried along the way because they were too controversial.
Our group is quite unique. There are many long-term survivors. Women who, according to conventional medicine, should have died years ago. We are inspired by these women and we all inspire one other in many ways. But not all women who have breast cancer are following this same path.
Frankly, over the years I have observed that most women who receive a diagnosis of breast cancer take the medical treatments and then try to forget about it.
Our group keeps studying. Why continue to study? Many people have asked me that question and the answer is simple; there is no cure for breast cancer. It truly is a chronic disease that hopefully one can outlive (and perhaps die from another cause). Most women do not see the disease in this way. But it is precisely this outlook that keeps most of the "Amazon" women motivated to stick to protocols and to continue doing research.
Recently, as a result of all of this research, something great has happened. Our current co-list managers, Lynne Farrow and Sally Gould have put together a website and non-profit foundation that presents part one of our voluminous research. It is a terrific place for women to visit who have been newly diagnosed with breast cancer to find the right questions to ask their doctors. It has taken us years to come up with these questions - all of which are backed up with medical studies.
Many of us who have done this research feel that if only we had had such a list of questions earlier on, maybe we would have not been led like sheep to the slaughter when we were newly diagnosed.
Breastcanceralternatives.org (NOTE from Cecilia: Unfortunately, that site is no longer active) was another oasis in the desert for women who have open minds and who want or need to ask questions. Of course, many women might find the whole questioning idea too stressful. An alternative medicine physician once told me that women like our Amazons represented only 3-5% of all breast cancer diagnosed patients.
Those of us who have been a part of Amazon are proud that we are in that small minority, but we also realize that it can be a lonely and scary place to be. That is precisely why the e-mail group is so important to us.
However, we always remember that breast cancer is a life-threatening and life-taking disease. It is a disease which causes immeasurable suffering to the over 200,000 women a year and to their families. And people die from breast cancer to a tune of over 40,000 a year in the United States.
There is a poem from an anonymous author that we appreciate on our e-mail list, and we post it when someone has died (Most of our deaths have come from women who joined Amazon after using adjuvant medical treatments like chemotherapy and radiation). This Warrior Women poem speaks directly to the very personal journey that is called "breast cancer":
You join an army of wounded women,
who wear pretty clothes that conceal the scars and the pain
and summon brave smiles to camouflage anxiety.
Each shares a touching, intimate memory of a day
that changed our lives forever.
A memory of a morning shower
when we touched our breasts and cried.
A long last look in the mirror, as we said good-bye.
Good-bye to vanity. Good-bye to self pity.
We haven't the time. We measure life in moments,
We are the meaning of lifelong friends.
Bosom buddies gathering strength from one another.
We are courageous. We are proud.
A circle of women we span the globe,
and we have touched eternity.
There is a word that strikes fear in our hearts--
the word is recurrence.
We try endlessly to search the reason.
We valiantly fight to find the cure.
We do so for daughters, granddaughters
and for friends and ourselves.
We do so for the women who have gone before us.
With each loss we feel tremendous anger.
We rage. We taste fear.
But with each loss, our capacity to love deepens.
It grows, it ripens, it blooms.
Each precious moment on this earth is a gift.
We will not leave this gift unopened.
We will not leave one smile undone.
We will not leave one hug forgotten.
We will not miss one opportunity to make a difference.
We are women warriors.
Our causalities are high.
The women who have gone before us
have lost a battle with breast cancer,
but they haven't lost the war.
We honor these women, we feel them, we remember them.
We carry them with us, and we made each one a promise.
A promise to never again look the other way.
We have breast cancer.
We are alive.
©2005 Cecilia Mitchell Miller, unless otherwise specified. All rights reserved.
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