IF YOU HAVE EARS…Hear. : Where are the people that accused me? The ones who beat me down and bruised me? They hide just out of sight. Can’t face me in the light. They’ll return but I’ll be stronger. I want to dream again. Take me where I’ve never been. I want to go there. THIS TIME IM NOT SCARED. Now I am unbreakable, it’s unmistakable. No one can touch me. ~Anonymous 🙂
Ann Fonfa, founder Annie Appleseed Project – October 2017
Some folks ask me not to tell people that I am a 24 year+ breast cancer survivor. I will celebrate 25 years of survivorship in January 2018.
Oh not that, but the fact that I never took chemo (due to chemical sensitivity), or radiation (protecting my heart), or hormonal therapy.
This is MY truth.
I tried many natural methods (all called ‘alternative’), developed 25 tumors over 7 years, 14 AFTER a left mastectomy. Told I was stage IV in 1997.
This IS my truth.
I eat only organic, take dietary supplements, am physically active, enjoy life and still do a coffee enema daily when home.
This is my TRUTH.
I give people hope, share my optimism, and find small studies (all there is, in ‘alternative’ medicine) with ways to reduce toxicity of conventional treatments.
THIS is my truth.
The way they show WHERE on the breast is like a clock. Noon is at the top, 3:00 at 90 degrees. BUT 2:00 left breast, despite 24 options, is THE spot for 1/2 of All breast cancer. Big deal in my mind and NUTRITIONALLY related to the digestive meridian (per Chinese medicine). THIS is My Truth!!!
I found a calloused area on my left breast at 2:00. (believe it or not 50% of breast cancer is or was located there; I believe the digestive meridian in Chinese medicine crosses over that spot). I waited until after my visit to my family doctor in December. In early January I went to the place I had my first mammogram two years before, to show them – the Strang Cancer Prevention Institute, NYC. They immediately sent me to a breast surgeon. I knew so little that I thought he WAS my doctor. No biopsy, no 2ndopinion (which I recommend NOW to everyone). Surgery was set for four days later which I understood to mean I had terrible cancer.
I went to work that Friday, stayed in bed with my husband on Saturday, telling him all would be well, but lying. I was not quite 45 years old and knew no one living with cancer. On Sunday night around 8pm I got a phone call. A woman said: “I heard you had breast cancer and I wanted to tell you I am a 10-year survivor”. My world literally changed in that instant. Even now I feel a chill and the benefit of KNOWING it was possible.
I went to surgery on that Monday, confident of success. A nurse told me, while I was semi-alert, that I had a lumpectomy and I was ‘fine now’. I used that as a mantra for years. Just a bit later the surgeon told me he had removed 18 lymph nodes which I say was done without my express or informed consent, as he didn’t prepare me ahead of time, nor discuss the adverse possibilities. My chest, back, left forearm and left hand swelled but ‘my’ surgeon NEVER identified Lymphedema so I had NO treatment until I read in a patient advocacy newsletter about it.
I prepared all my own organic food and got a small refrigerator next to my bed, my mother brought me fresh-squeezed organic carrot juice 2x the day of recovery. My husband was clever enough to ask if I could leave the next day. I stayed 2 horrible nights in the hospital – I was at that time extremely Chemically-sensitive and all the hospital odors were torture. I had a mask with me (as always).
Additionally I never slept after the anesthesia wore off, in fact was awake for about 6 nights. I became 100% organic, bringing food everywhere, even to fancy restaurants or friends’ houses. I learned that 3am was the ‘hour of the liver’ so I awoke each night and rode my stationary bike for an hour. I took many dietary supplements, chosen from readings I was doing. After all there was not yet an Internet and I am not sure I even had a computer until 1995.
I visited an oncologist although I felt fairly sure I would not take chemo. This doctor greeted me with “we can start chemo next week” and I said “Doc, I have a problem”. He said, without knowing what it was, “It doesn’t matter”. Of course it mattered to me as I was then suffering from extreme Multiple Chemical Sensitivity and became ill with headaches, dizziness, falling down, etc. for as many as 3 days a week and had to stay in bed. He said again that it didn’t matter and I ran away from him. THIS IS MY TRUTH
In late October 1994 I felt a tiny lump in the exact same spot as the first one. My new surgeon, a woman I chose, told me it was “so granular” it was probably nothing and to wait for the scheduled February mammogram. I didn’t know at the time that invasive lobular carcinoma (my original diagnosis) did not show up well on mammograms, but I had been told often that it most likely would spread to the second breast.
The radiologist suggested I get a biopsy. The surgical biopsy removed 2 tumors, the 6 mm I found and the 1.5 cm I hadn’t felt underneath. (This was my 2nd lumpectomy although the surgeon wished to remove my breast. I objected because it was ‘salvage mastectomy’ and it was automatically done for a recurrence. I just wanted treatment directed to ME PERSONALLY. Women were not even told if they had dense breasts and thus mammograms were useless.
In 1995 I also went to the CHIPSA clinic in Mexico, a Gerson Therapy clinic. I was somewhat fearful of using so much carrot juice as I had systemic Candida. But within the 2 weeks I stayed there, this problem receded and eventually stopped. My mother was my companion AND I was quite healthy compared to all the other residents –remember folks went to a Mexican clinic when all conventional treatments failed them. We walked around a lot during the day and my health remained excellent. I did four coffee enemas daily (nice when someone else makes the coffee and prepares the food), ate well and juiced 13 times a day (they made that for me).
Yet a scant year later (1996) I developed Paget’s Disease of the Nipple on the right breast. I was told this was the expected outcome and that cancer was now in the second breast. I had an immediate mastectomy as I definitely did not want the many surgeries I already had on the left side, repeated. I asked my surgeon to “slice and dice it” to let me know what was going on.
She wanted to remove lymph nodes on the right side but since I already had lymphedema (swelling) on the left, I ASBOLUTELY refused. To this day I am convinced that removing lymph nodes is a HUGE miscalculation. BTW, I had no general anesthesia after the 1st lumpectomy, but was awake though all others including the 2 mastectomies a year apart.
When she came in to discuss the results, she said it was ‘lucky’ she had not removed lymph nodes as there was NO tumor. Funny thing is that I subsequently found a study suggesting that a lesser type of cancer indicates it is healing itself. Too late for me, now both breasts were gone. My long cancer journey was not yet over. In 1997 I developed the first 4 of 14 tumors on the left chest wall. They were removed and found to be ‘consistent’ with my slow-growing invasive lobular carcinoma. When the next tumor(s) appeared I decided to try Maitake D-fraction. This reduced a tumor but more grew (still proof of principle).
Next I tried high dose vitamin A. I had been meeting with a doctor who did clinical research on this at the Valhalla School of Medicine. He worked with the famous Dr. Maurice Black (by then deceased). I also, serendipitously found other sources to read. This doctor wanted me to give up my protocol and join his study. But my choices had kept me alive through a lot so I kept on with my own path. The protocol THAT I chose was specific to me, but it was almost entirely guess work. Still the 4 tumors that I then had began to reduce within 3 weeks to the day that I took the vit A. Soon I found a liquid form which was easy to take and the reduction continued although it never totally disappeared.
The tumors got smaller and softer but sometimes, especially later in the day, were harder again. After many months, I had them removed and sent to pathology. MY Results stated mostly necrotic (dead) tissue, well-differentiated (good) and very high ER and PR receptor counts. Also supposedly a good outcome. However now 2 doctors, with no tests what so ever, told me I was stage IV. I absolutely REFUSED to accept that. An oncologist told me it was very dangerous – I did ask if it was worse than Adriamycin, a toxic chemo drug that can damage the heart – I had done it anyway. A medical textbook taught me that any harms from vit A could be removed by stopping or lowering the dose, and that in 3 weeks all would be normal again.
Because I had such a good outcome I decided to attend the December 1998 San Antonio Breast Cancer Symposium to talk to top breast oncologists about this. At the time and still, we tell those with Triple Negative Breast Cancer, that there is little to be done conventionally (but of course they are highly treated). I thought perhaps vit A might be a useful tool for this group and be able to make them more positive. There was a drug on the market that offered some ‘element’ of vitamin A called Fenretinide (studies from Italy mostly). To my surprise all four of the oncologists I spoke with assured me they already knew what vit A could do. But as we all know doctors have what I call ‘fear of vitamins’ (also no wish to step out of the normal/standard work), so no one was using it.
However at this major conference I met a Chinese Herbalist from NYC. He told me he had met one of my friends and knew about my circumstances (at that point about 24 tumors overall). He said he thought he could help me. Well by April 1999 I had developed the 25th tumor and I decided to meet with him. He wanted me to give up all that I was doing to take his herbal prescription.. Prescriptions in Chinese medicine is ALWAYS personal.
The doctor looks at your tongue (like with acupuncture), feels your 12 total pulses 6 in each wrist (3 per side). The prescription is usually about 20 herbs. It is cooked in water (a lot of water) and simmered down to 2 cups. Nowadays, I know he sends pre-cooked packets directly from the herbal shop he works with. He told me that because China is so polluted, good quality herbs cost 4X what they did when I took them 1999-2001.D to stay that course since it had kept me alive so long.
He has been practicing herbal medicine from his childhood as he is the 4th generation. See his website http://www.georgeycwong.com/
I bought the herbs in Chinatown using the written prescription (in Chinese characters of course) that he gave me. I cooked them down into a tea, drank it and almost immediately broke out in hives. They covered my entire body, with raised lesions on my arms and legs. Uh oh. Basically petrified, I consulted a dermatologist who gave me a prescription for antihistamines. If she had offered cancer treatment I think I would have asked more questions. I did ask her if she wanted to see what a double mastectomy with no reconstruction was like. She said she knew about it.
But that night I awoke with terrible chest pains, a tightening that made it very difficult for me to breathe. I sat on my living room couch (so as not to ‘bother’ my husband) and contemplated dying. But of course, I didn’t. In the morning I called my good friend who was my acupuncturist and she read from the Physicians’ Desk Reference on the adverse effects. (You will never hear the term ‘side’ effects from me as that is marketing. I call it Adverse, unwanted or HARMS). Yes, indeed it included chest tightening so I called the dermatologist. She said” HOW was I supposed to know”? And there it is! Anyway the hives cleared up in 3 days and I noticed that the symptoms of my Chemical Sensitivity had changed. The intensity of my reaction had also reduced to what I wrote then was 65% less. I went off all supplements as I tried to assess what was going on.
Eventually I restarted the herbs and got NO new tumors and the monthly prescriptions changed accordingly. I started with an MRI because I wanted proof of this technique. After ten months the Chinese doctor (had a PhD from Harvard as well as life-long training with herbs) told me I was done. I was afraid to stop and kept on for 4 months until he insisted I was finished with the treatment. After I had another MRI, I received a call from the MD reader who wanted to know WHY I had a chest wall MRI. I told her my story, she hung up and called me back over an hour later stating she didn’t see ANYTHING. But as we all know, you want your doctor to tell you how you are.
So, amazingly on September 12, 2001 in NYC I had the appointment with my breast surgeon (only doctor really following me over the years). I had to walk to the hospital – no cars, buses, subways or taxis on that day. When I arrived, I waited an hour for her to arrive. She told me …. I was free of cancer and she gave me a diagnosis of NDD No Discernible Disease (not sure if anyone else has ever gotten that one). I walked out on clouds only to begin crying as I viewed Seventh Avenue and the smoking ruins of the World Trade Center. About 40 people rushed up to me and all hugging me and telling me “it would be alright”. And inside I was screaming “I’m alive, I’m ALIVE”.
By June 1999 I started the website www.annieappleseedproject.org and that July traveled with a group of women from my SHARE study group, to Montreal, Canada to meet with an alternative researcher. We had some adventures and came home with some meds. During that month I developed 6 more tumors – all around the nipple of the left breast and finally had a mastectomy. But here is the GOOD news –all the subsequent tumors from 2-9 were shown to be growing at a rate SLOWER than normal cells. Success I thought, but couldn’t get any doctors to agree. I was basically told that they couldn’t really say how I was doing since I hadn’t followed protocol. I so wanted to be seen as me, an individual, but that seemed impossible.
Now it is almost 25 years later, I turn 70 the month after and life is AMAZING. I am the founder of an all-volunteer nonprofit Annie Appleseed Project with a website viewed over 13 million times. I’ve been able to talk to thousands of people and I know I help others. I know this and it is part of my personal healing journey……. THIS IS MY TRUTH 🙂