by Ann Fonfa
“I was braver than I knew.”
I was diagnosed with invasive lobular carcinoma of the left breast after finding a lump in January 1993 while doing my breast self exam. Because I have extreme multiple chemical sensitivity, I didn’t take chemotherapy, and I chose not to do radiation or hormonal treatments.
I had recurrences in the left breast, and on the chest wall after the mastectomy. I was told I was stage IV in 1997 although the disease had never spread beyond my chest wall.
One of the greatest obstacles was not having any support from the medical community. When I showed them that the tumor kept occurring, but grew slower each time, they were astonishingly uninterested — no doctors were even willing to say I might be on the right track. Because I hadn’t done chemo or radiation, doctors said they couldn’t really ‘track’ my progress. It was quite a struggle determining what to do. My husband was completely supportive of my decisions but neither of us knew what the outcome would be.
Having support from others who had breast cancer was something that I really enjoyed. When I started a study group in NYC as part of nonprofit SHARE, it was in order to learn from others and get help with what I was going through. Through advocacy, I met women and men through the National Breast Cancer Coalition. I joined an online group called Amazons, others who were interested in complementary and alternative medicine (CAM).
I had some success with Maitake Mushroom D-fraction and high dosages of vitamin A in reducing the chest wall tumors. Eventually I began using Chinese herbs which resolved all of them, no new ones occurred. What I also believe helped me heal was that I changed my eating habits to mostly organic and vegan. As part of my research, I learned about, and went to a Mexican clinic offering the Gerson Therapy; I included many of their holistic protocols into my life. My research brought answers that I needed to know about my body’s toxicity levels and how this affects cancer growth in my body. I took supplements, learned what was best to juice after a diagnosis of breast cancer, and continued my research in the fields of alternative medicine for cancer.
I wasn’t one to sit back and just hope that things would get better. I became proactive and did what I could. I learned how the western civilization diet is causing more diabetes, heart disease, high blood pressure, obesity and cancer. I also learned that one size does not fit all. We are always looking for one cause instead of causes. We are always looking for one treatment instead of looking to include a holistic/inclusive approach.
I think one solution is to focus on prevention — preventing occurrence and preventing recurrence. We can act on this by avoiding known pollutants and triggers for illness.
There are five things I do for my well-being every day and to help reduce pollutant and toxic buildup in my body:
- I eat real food — fresh (organic) fruits/vegetables every day (after all the National Cancer Institute suggests 5-9 a Day). I never eat junk food (no fried foods or soda) and I reduced salt — using herbs instead. I take dietary supplements that boost vitamins and nutrients good for my immune system.
- I drink clean water.
- I exercise moderately every day.
- I apply detoxification methods that I have researched.
- I do at least one thing every day that makes me happy and that relaxes me.
One of the new revelations I learned about myself was that I was braver than I knew. I was raised in a family that prided itself on standing up for what is right — I have marched for Civil Rights, against nuclear weapons, for Gay and Lesbian, and more. So I was used to being in a minority and had learned that I could stand my ground. I was actually proud that I could expand my horizons a bit and learn about mind-body protocols which I originally did not think much of. But looking back I saw that positive beliefs and concepts were very helpful to me too. A woman talked to me the night before my first surgery when I was scared and feeling alone, telling me she was a TEN year survivor. In that instant I KNEW that I too could survive.
I believe in alternative and integrative medicine because I researched this concept for several years while acting in bits and pieces of the information that I liked. I found so much that made sense to me. I was angry that the business model was in charge of our health. I felt that natural strategies had a clear place in EVERYONE’S cancer journey.
When I was asked to talk to the Social Workers of Cancer Care Inc about alternative treatments, back in November 1995, I realized I had substantial information about other possibilities and healing modalities. So I began using the name The Annie Appleseed Project and started handing out booklets and then finally started a website. The actual all-volunteer nonprofit came four years later. It is the concept of our organization that everyone should make more informed decisions. We cannot influence exactly what any one will decide, but we can offer another side of the story. What is done now in conventional cancer treatment attacks ALL cells of the body even though such a small percentage has cancer. Someday I believe we will look back in horror at the harm caused to our bodies. The teachings of the Hippocratic code is “First do no harm”.
I am now almost 65, I stopped working for pay years ago. I now devote myself to advocacy and Annie Appleseed Project’s website, Facebook and Twitter presence. My skills are in networking and I have been able to reach out to other cancer advocacy groups to join forces and share the information widely.
I am married to an amazing man who supports my goals. He retired almost ten years ago and wishes I did less, but doesn’t harass me over following my passion and doing what I believe needs to be done.
Steve and I married after five years of living together, but we knew each other for 15 years before that. I like to bowl and even though I rarely do, I am proud to still bowl well. I scored 147 the last time, knowing that I can still bowl is something that makes me feel good! Steve’s stepson (whom I adored from our first meeting when he was 15) now has two sons aged five and seven. Steve and I are grandparents which is lots of fun.
I am not a doctor, I do not claim to be one. I do not have medical training, although I have spent the last 18 years attending medical conferences and gathering useful information. I am a patient like most of you. I am an advocate and an activist. You can choose to make your life count as you feel called to do. But stand up for what you believe in and in what works for you. If you are interested in complementary and integrative medicine, explore the studies to help you learn more so that you can decide what is best for you. Ask the Food & Drug Administration, the National Cancer Institute and any other cancer center to continue to research these options for us. Doctors are trained to accept a certain level of evidence, but it costs millions to conduct those trials, we need support.
In the past decade, more cancer centers have added complementary, integrative and alternative medicines to what doctors now offer their patients for cancer treatments. Just as each medical center has to choose what is best for them, each person diagnosed with cancer has to choose according to their beliefs and research and to do what will help them to heal.
People come to Annie Appleseed Project’s educational conferences to learn more — the speakers and topics are fascinating, the networking is amazing, and we serve ONLY organic food. That’s walking the walk for sure. Join us.
I was braver than I knew. Each of us are.
There are many resources on our nonprofit website including worldwide support groups, and CAM practitioners: www.annieappleseedproject.org n