Anne Caputi Discusses Her Choices

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Ann Caputi speaks:

From the day that I was diagnosed with breast cancer in April 1997, I knew there had to be a better way -- a way to survive cancer that did not include mutilating surgery, radiation and chemotherapy. I do not mean to say that I literally knew the method. I mean I felt it deep in my gut, my heart and my soul.

As I sat in two different surgeons’ offices in the next week, I heard the same program laid out, (albeit in a very different manner the second time:) “Mastectomy, followed by chemotherapy, followed by radiation.” Though the second surgeon could not have been more emotionally supportive of me, the horror of the regime was unchanged by her warm, deeply caring presence. I listened respectfully and attentively -- my life was on the line -- but inside I knew that it was extremely unlikely that this would ever be my course of action. She ended with a phrase I have now heard many times when consulting with conventional physicians: “I’m sorry. I know it’s terrible, but it’s all we’ve got.”

Horrific indeed, whether in its execution or in its inability to eradicate the cancer without leaving behind enormous health consequences and future liabilities for recurrence. Not even the mortal fear I was feeling could have impelled me to act on this plan. I concluded my consultation with her by saying that I wanted to investigate alternative options and that I would keep her informed of my decisions and actions as I found my way.

Personal history is important to this story, as I believe that it is personal and professional experience that prepared me for what I have done. It is also important because I was a person, like anyone else with a full and rich life before I became a breast cancer statistic.

I am forty one years of age. While in college I became interested in alternative healthcare and started the transition to a natural foods diet. At twenty-three I moved to the Boston area and began training in Polarity, a holistic healthcare system. Since that time I have taught, counseled and had a general practice devoted to teaching others how to maximize health and minimize vulnerability to disease. Professionally, I have taught quality of life on every level; physical, mental, emotional, and spiritual. Personally I have built a lifestyle which sprang from a daily commitment to the same. Clearly it was my nature to be drawn to health and healing. When in the mid-eighties I developed severe chronic fatigue and multiple chemical sensitivities, it became a matter of survival as well.

My life centered around building and maintaining my health. I fought aggressively and relentlessly to maintain a level of health that would afford me the closest approximation to a normal life as I could create. I refused to succumb to a definition of “disabled” for myself.

When suddenly I was diagnosed with breast cancer, and shared the news of my crisis, I repeatedly heard, “You are the last person I would ever imagine would get breast cancer.” A dear friend and client of mine who is a physician said it was frightening to her that I got cancer while living a life devoted to health and prevention of disease.

She wondered what it said for her own and others odds, those who were not so devoted to health and self-care. I knew, however, that it was the awareness of my vulnerability that fueled my vigilant lifestyle.

Truthfully, I never thought that I would ever have breast cancer. I was so careful. I “did everything right.” I knew I had chronic immune challenge and fatigue, but I was ever proactive in fighting my physical vulnerabilities. I erroneously imagined that the worst that could happen was that I would slide into a level of fatigue which would threaten my self-sufficiency. Upon diagnosis I learned quickly that this disease which we know as cancer is extraordinarily powerful, and that no one is immune, no one is beyond its grasp.

I will never know when immune challenge and breakdown became cancer, when those first damaged breast cells began to collaborate in the creation of a malignant tumor. I will always know that on April 8, 1997 my life changed forever, and the word cancer took on a new and most personal meaning. In a day it became the defining element of my life.

Born in 1957, on Long Island, an hour out of New York City, , I was the fourth daughter in five years. Huntington was then a rural town with many active farms. Behind our acre yard was a vast tract of pasture in which my older sisters found great adventure. I don’t remember those pastures. They were developed into subdivision by the time I was five, but there was still plenty of farmland around me during my childhood. Its memory would both please and haunt me in my adulthood, missing the beauty of my childhood hometown, and then, four months before my 40th birthday being diagnosed with breast cancer.

I was now one of the many Long Island women with breast cancer whose numbers represent epidemic proportion and greatly exceed the national average. Those fields transformed into lawns have been implicated as major contributing factors; first, as they were cultivated with pesticides and chemical fertilizers, and then, as they were sprayed with herbicides to suppress crops from appearing. The new yards promised beautiful green lawns and shimmering swimming pools, not future cancers.

In 1985 I moved to Newton Centre, a suburb of Boston. I needed to get further from the congestion and pollution of the very urban to the greener, quieter suburban. I had a splendid situation; a beautiful neighborhood with exceptional old houses, and, unfortunately, the green lawns created by chemicalized lawn care.

Most everyone in our neighborhood used a lawn care company. The yellow warning signs posted after a spraying cropped up like daffodils everywhere come springtime and persisted until the last leaf had fallen in November. In the mid 1990’s I started to hear about the unusually high breast cancer rate in Newton. Strike two for me.

Perhaps the third strike was the summer of 1987, when I lived in Falmouth on Cape Cod, doing an internship in organic farming just miles from Otis Air Force Base, a serious toxic waste site.

Falmouth also has a high rate of breast cancer, perhaps the highest of all cape townships. Although I recently found out that I have a genetically linked form of breast cancer, I’m certain that environmental and other factors potentiate and awaken genetic expression. The only known breast cancers in my family were two elders who had mastectomies in their eighties.. No one else in my mother’s generation or mine (and there are many women in both generations) has expressed it to date. (I have five sisters, and many female cousins.) Lonely as it is, I hope this journey remains exclusively mine.

Prior to my diagnosis, it had been twenty years since I had used any pharmaceutical medications at all. I had not taken so much as an aspirin, treating acute conditions with natural remedies and using lifestyle to maintain my health. I had seen a medical doctor only three times in twenty years.

The prospect of surgery, chemotherapy and radiation was a profound shock and foreign to my entire way of life.

Refusing conventional American treatments, I found myself up against tremendous pressure and challenge of my beliefs from my family and others close to me. Understandably, my choices were terrifying to those who love me, and whose knowledge did not extend beyond conventional and mainstream health practices. The thought of losing me was excruciating for them.

And I was profoundly sensitive to their fears and heartache. Fortunately, as an adult, I have lived outside the mainstream in most every way, so the courage and endurance needed to weather these challenges was well developed. My crisis confronted us all tremendously. This was a terrible burden on me. I know of others who have buckled under the pressure of family members’ fears and demands.

This pressure and its accompanying emotional stress on most all of my relationships was equal to any other stress factor in my journey through cancer. I know that I have been blessed with extraordinary strength, perseverance, faith and instinct, along with profound support from my partner and a few close friends. My holistic orientation was central to my convictions, and I was fortunate to have a strong community of colleagues who supported my choices. I could not have sustained my vision over the course of such a long struggle without the tremendous strength of my support network. Conventional treatments do not only ravage the human body. It was unacceptable to me to let my body become a toxic waste site, an environmental hazard. Chemotherapeutic agents are extremely toxic substances which have their founding in the chemical warfare agents developed in the earlier part of this century. Radiation therapy uses the same forces at work in nuclear weaponry. Agreeing to treat my cancer with these methods would bring me into a dependent relationship with substances and forces which go against my most basic values of respect for our planet and its ever more fragile ecosystems. Taking chemotherapy into my body, it would then become mine, and its elimination out of my body and into the waste stream would now be my responsibility. This raises serious ethical, moral and philosophical issues for me. I have lived for many years with a devout commitment to as minimal an impact on our environment as possible; living simply, eating almost exclusively organic foods, using “green products” in my home. How could I now ponder the use of profoundly toxic chemicals to extend my life? Two aphorisms came to mind. From the Hippocratic oath: “First, do no harm.” And from the Iroquios confederacy: “In our every deliberation, we must consider the impact of our decisions on the next seven generations.”

Chemotherapy agents when eliminated from the body through urine and feces become a part of our collective waste stream. That means that the chemicals that I flush down the toilet today, show up in someone else’s’ tap water downstream tomorrow. (Even the diagnostics for cancer involve toxicity. When I arrived for a bone scan I was injected with a radioactive isotope and was instructed to drink plenty of fluid and urinate often while waiting three hours for the isotope to collect in my bones.

The fluid would flush out what it could of the radioactivity. I was told that it was okay to use the hospital bathroom, my urine was too dilute to be considered toxic waste.) Is that what I wanted my legacy to my community, present and future to be? I had to ask what makes me so important as to justify this profound environmental degradation on my behalf? If I do not take a stand against this practice, who will?

How long can we continue to say, “Well, it’s all we’ve got, this is a justifiable application...,” etc.? If we do not ask these questions, what will generate the demand for “safe and efficacious” treatments, both for our health and to protect our fragile planet? One last thought on this matter: There is indisputable evidence that chemical and nuclear contamination have contributed to a dramatic increase in the incidence of cancer.

How can we use these very agents in our fight to eradicate it? I must note that the chemical companies which produce and profit from the toxic chemicals which are poisoning our environment are also in line to produce and profit from “the cure.” That being said, let me say that I hold no judgment against those who choose these treatments in their battles with cancer. There is no easy way to survive cancer and there are no easy answers as to how to effectively treat or prevent it in every instance. Cancer is a devastating disease, and I deeply understand each cancer survivor’s desperation to outlive it.

The truth and good news, however, is that safe, effective and proven methods for treating cancer already exist. It is infuriating to me that millions of dollars are solicited in the name of “finding a cure” which generally means more investment in repetitive research and toxic treatments, not investigation into alternatives which are in use here and outside this country. There is a devastating, immoral and suffocating stranglehold on information about other treatments, not to mention access to the them. This infuriates me as well, in its ramifications for so many precious lives.

I was extraordinarily fortunate to have the financial support of my parents to gain access to treatments in Germany. These treatments brought me back, in three weeks, from what was an advanced and extremely threatening condition for which the doctors here had no palatable or particularly promising options.

My mother could not believe that there could be effective therapies that would not be made available here in the United States. To her it was unfathomable that politics or business could influence development of or access to treatments that might be safer and more effective than those in conventional use.

Not until she and my father joined me in Germany, met with my oncologist there, and witnessed first hand a cancer clinic which employed none of the toxic therapies used here, and successfully treated very difficult cases, could she begin to believe what I had insisted upon since my diagnosis. That is, cancer can be effectively treated without the use of mutilating and poisonous treatments.

Three primary treatments made up my program in Germany. These were Electro-galvanic therapy, Hyperthermia, and a daily infusion of Carnivora; an extract from the Venus Fly Trap plant which attacks cancer and shrinks tumors without damaging healthy, non-cancerous tissue. Carnivora was researched and developed over the last three decades by the oncologist who treated me in Germany, Dr. Helmut Keller, (to whom I feel that I owe the health and life that I cherish today.)

I will elaborate on the nature of my entire program in Germany further on in this series of articles.

In contrast, the kind and devoted oncologists with whom I consulted here in Boston could offer me no more than perhaps more comfort, perhaps a bit of life extension, perhaps a better quality of life. All of this was predicated on my use of the most toxic chemotherapy combination that they have. Tamoxifen was also offered as a possible alternative to chemotherapy, and the breakthrough non-toxic breast cancer drug, Herceptin, but it was not yet available here in the U.S. We discussed a six month program, three months of high dose chemotherapy with horrible side effects which, I was told, could be mollified with many other medications that they recommended I be prepared to agree to taking.

This would be followed by three months of radiation treatments. That was what was being offered to me here, one week before I left for Germany. I deeply appreciated the respectful way in which the oncologists presented the options as they saw them. They acknowledged that all matters were subjective in terms of whether these treatments would improve my quality of life, and they were straightforward about the unpredictability of my tolerance for the drugs and radiation. These exceptional doctors showed great respect for my values and beliefs.

I felt utterly free to say, “no thank you”, and never felt that they thought either that they had a great package for me or knew what was best for me. I was meeting with compassionate and deeply caring doctors who are truly devoted to helping people with cancer. And yet, I couldn’t help but hear in my head those words that I had heard at diagnosis, “We’re sorry, we know it’s horrible, but its the best we have.”

Why did I have to leave my home, my family, my partner who had been at my side constantly and devotedly from the beginning, and travel out of my native country, to a foreign land and language, spending 20,000 dollars of my family’s money to produce profound results without serious side effects, when I live in the Boston area, an area considered to be one of the most advanced in medical research and care?

Addressing this question and advocating for change in how cancer is treated here are more than enough to keep me purposely engaged these days. It is a job I accept willingly and eagerly.

Bio: Anne Caputi is a Registered Polarity Practitioner and a writer currently at work on a book about her experience with breast cancer. She has a private practice offering support and guidance to people dealing with cancer and other life challenges.

Anne Caputi Update

August, 2005 Update

Anne Caputi Update May 2006

Choices, methods and lots of information

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