December 13th 2000: “Is there any one here with you?” I remember barely hearing him say that and answering no, but I’d be all right, that I’d get home ok. I had just been told that I had inflammatory breast cancer. Not just your garden variety breast cancer, no I had the most malignant, most aggressive form of breast cancer there is. Automatically I was stage four. “I’ll get home ok”. Home was a half hour away. I’m not sure I believed it. I was in shock I could not fathom the reality that was just handed to me. I got into my truck and pull out of the parking lot. I went down the speed dial on my cell phone. I called my mother, then all of my five sisters. That’s what got me home that day, talking to them. Their responses were all a little different.
That drive down the mid cape highway, cell phone stuck to my ear, was the start of a journey that took me to places dark and places light, a journey that gave me many gifts. Some I’ve lost, some I still have. I had no idea what it meant. The only thing I did know at that moment was that I was in trouble and that I didn’t have a great deal of time to save my life.
I couldn’t sleep that first night. I had a very dark pit in my stomach. I felt sick. I prayed for it to be removed. I told god that I wasn’t going to be able to do anything I need to do feeling this way. The universe lifted it from me. The universe rocks.
Inflammatory breast cancer is a very rare form of breast cancer. There is no lump. It does not show up on a mammogram or ultrasound. It often goes undiagnosed for months because it looks similar to a breast infection. I was lucky; Margaret Putnam, the first person who examined me, recognized it. She said “your breast is infected, but I’m not sure why. The worst possible thing this could be is inflammatory breast cancer”.
I looked it up on the Internet and found that 60% of the women who get IBC are dead within five years. I was in tears when I told my mother this. Trying to console me she asked me if I wanted my Christmas present early. I replied, “Ma, I said five years not five days”. I thought that if 60% percent are dead in five years that means 40% are not. I decided then what percentage I was going to be in.
My friend Sarah Grey went with me to my first oncology appointment. We sat in a nondescript office and listen to a doctor’s prognosis that stopped just shot of ordering me a body bag. He was fired. I didn’t care what my odds were. If he wasn’t hell bent on curing me he wasn’t going to be my doctor.
I started treating myself with alternative therapies immediately. The list of remedies was a page long. I started drinking a gallon of water a day. Not at all difficult considering the number of supplements I needed to wash down. I drank esiac tea, took cesium chloride, glycol nutrients. I received rakki treatments, acupuncture chiropractic care, and massage. I was energetically erased many times.
Sarah called Helping our Woman, an organization that helps women on the lower cape with chronic or life threatening illnesses. She asked who the women with breast cancer were raving about. Where was the best place to go for treatment? It was unanimous: Beth Israel in Boston.
I had never in my life spent time in a hospital as a patient. I walk in alone. I had many loving family members and friends that would have been there with me had I ask them, but going there alone was my way of claiming my power. This was it, the fight of my life. I would face it wide open and exposed. My weapons ranged from love and light to the most radical experimental medical treatment there was. It accessed depths and parts of my being that I didn’t know existed. It rendered me unable to walk up a flight of stairs. It poisoned me, mutilated me, enlightened and cured me. It took me to death and back. It shut me down and it opened me up.
I developed a deep bond with many wonderful people over my time at Beth Israel. I don’t know how it’s done other places but I reached out to these people. I was going to take the risk and care about them and they were going to care about me. They did not hesitate. Their generosity of spirit and love was and is a courageous act in light of the fact that many people they care for do not survive this disease.
The first time I ran into some one who knew, but didn’t think they were supposed to know, so pretended like they didn’t know felt so strange. Here was a person I’d known most of my life. We had always been comfortable with each other. Now they clearly weren’t sure how to act. This strengthened my resolve to include as many people as possible in my process. I wanted to destigmatize cancer. I wanted people to realize that I was still me. The best way to do that was to stay me and continue to go about my life. I traced the path that the news of my predicament traveled to its’ source and made a phone call. I said that I didn’t care if they told other people, but if they did they also need to tell them to pray for me. People instinctively want to help but some times feel lost as to what to do. I wanted them to realize that praying was huge. It didn’t matter how they prayed or even if they believed in god. Focusing on my healing, sending me energy, sending me light was very powerful and very healing. I truly believe that it kept me a fraction above the brutality of my treatment.
I also made a point to be out and about, to connect with people. I called it going out for hugs. There was an abundance of hugs to be had and to give. I know there were times I looked like death and scared the hell out of people, but no one ever shied away. They were there with a smile, some times tears and always love.
This is how my prayer posse grew and on January 14th 2001 1pm EST, I held a ten-minute international prayer/meditation/ visualization for healing. I had people all over the world focusing on my healing at the same time for ten minutes. A friend of mine in San Francisco emailed a hundred of his friends to take part. Another friend sent my names to monks in some remote location on the planet. I handed out flyers to my friends around town. It was extraordinary.
As I sat getting ready to go into my meditation I wondered what I would feel or if I would feel anything at all. I shut my eyes took some very deep breaths and settled into the most profound and powerful experience of my life. It blew me away! The energy, light and love that exploded inside of me was truly astounding. I literally glowed and vibrated for hours.
In the following weeks many people related to me the experience they had while doing the meditation. It was wonderful to realize that other people were having extraordinary experiences along with me. That it was a symbiotic relationship. That there’s a very deep bond that transverses the energetic plan and is instantaneous.
My amazing community put on six benefits for me in four months. Every one of them was a celebration of life. I derived such strength, courage and joy from them. I was so thankful to be able to be at all but one. Nothing was going to keep me away. I think in truth it was their way of keeping me going because anyone who knows me knows I can’t resist a party!
Now when I go out into the community I feel such a deep bond, as though there is an unspoken knowledge that in their way they helped heal me. And I so hope that when they see me they say to themselves “see, see what I helped do? I helped save her life”. In some divine way a part of me belongs to them. Certainly a part of my heart does.
Namaste
Sarah
