Decision Making on the Front Lines

I really think that it’s important to get a second opinion, and a third and
fourth. An interesting piece of research I read pointed to an
unusual fact: breast cancer patients rarely get second opinions. I think it
must be the fear, the driving need to press into action and the difficulty
of sitting with uncertainty. If it weren't for much practice at sitting at
the edge of the unknown, I would have moved more quickly into treatment.

Instead, I decided that I would listen to four brilliant voices. It takes a considerable amount of research just to determine who those voices should be, which is another reason that newly diagnosed women, emotionally and spiritually struggling to come to terms with the diagnosis itself, and the aftermath of surgery, often do not have the capacity to do due diligence. Shock diminishes cognitive capacity. .

Suddenly, I became a researcher in order to save my life. There is much information, sometimes very contradictory and at the end of the day, uncertain. I ask the questions, “What is the best treatment?’, “What is preventative?” And most importantly, “What heals?”

I had two consultations in Austin with the best people I could find, piggy backing on the research and experience of two dear friends, Ann Kay and Lexi Perlemutter, two fabulous women ahead of me on this journey. Feeling confident with the treatment and empathically connected to your oncologist is vital. As Lexi said, “If you think transferences develops with your therapist, that’s nothing compared to your oncologist. Your life is in his hands”. Lexi’s husband, Mark, is my attorney. I know him well enough to know how he would have do everything in his power to make sure that this woman, the love of his life, is in good hands.

I learned that I have Stage 2 cancer, more advanced than what I originally understood. I also learned that because I am not estrogen receptor or HER 2NEU positive, my cancer is
considerably harder to treat. Or as my brilliant friend and Doctor of Oriental Medicine, Nalini Chilkov says, “Western medicine isn't so sure what to do with you”. I thought to myself “neither do a lot of people!” She reminds me however, that what I do have is my immune system and with her help I can determine just how to work with those issues. Certainly the enormous love and support that I have been so touched by,
becomes an intrinsic part of that immuno-matrix, along with attitude,
nutrition, exercise and spiritual practice.

Both oncologists recommended chemo. The analysis of the tumor suggests that I have an extremely aggressive cancer, a 9 out of 9 on the Bloom- Richardson scale. Dr Doty, Lexi’s oncologist, presented me with a very aggressive treatment protocol that had significantly higher survival statistics, but I would need cardio clearance. Dr Kampe presented me with a less severe regime, but one that had less of a successful statistical outcome. In the meantime I had a bone scan, a breast MRI , chest, pelvic and abdominal CT scans and an eco cardiogram. More testing, more sitting at the edge of the unknown, waiting and wondering about the invisible world inside my skin. It was only six weeks ago that cancer was the farthest thing from my mind. Since then whatever remaining cancer cells still inside me are going about their business: they are reproducing. While I am waiting for test results, they are reproducing. While I am researching the question of chemo therapy, while I am deciding which oncologist to work with, while I am sitting with patients they are reproducing. While I am laughing or crying or reading a poem…and while my friends pray like the angels in heaven.

While a tumor is growing, metastasis is suppressed. When a tumor is removed any remaining cancer cells then move into metastasis mode. There is a window of time where the body is both more likely to metastasize and yet more amenable to chemo, as chemo targets rapidly dividing cells. I had to make critical decisions, evaluating what level of risk I am willing to endure. The risk of chemo, its severity and long term down sides well documented by the alternative medicine perspective, weighed against the risk of not moving aggressively enough. The decisions needed to be made and treatment, whichever I had decided upon, needed to begin by no later than the first week of August.

Dr Doty encouraged me to get a second opinion with Dr Joyce O Shaughnessey in Dallas, in his opinion one of the best in Texas. My lifelong friends in California, Jon Gordon and Laura Dern, connectd me with two of the best breast cancer specialists on the west coast, at Cedar Sinai in LA, Dr Ed Phillips and Dr Kristie Pado. I have a deep affection for Cedar Sinai. It was a young resident at Cedar- Sinai who saved my live when I was 16, diagnosed with the first case of paratyphoid fever in 30 years. Could they do it again? Omens come into play in this journey. The mystery has many layers.

Within a week Dr Doty consulted with Dr O Shaughnessey and Dr Pado. He got me in to see my cardiologist to determine whether my heart could withstand Adriamyacin without damage. He called me mid week to let me know his progress. Dr Pado called me and generously spoke with me for over forty minutes, reassuring me, explaining things I did not understand about cancer and its treatment. She also offered some important thoughts about standards of care. Both O Shaughnessey and Pado agreed with Dr Doty’s thinking about treating the cancer more aggressively than the first oncologists I consulted with. This regimen would give me a significantly better survival outcome. There was another suggested regiment that was more aggressive but not proven to yield a better outcome and the impact on the body is very rough.

I now had the four brilliant voices I was looking for to illuminate a treatment path in which I could believe. More consultations than this would have left me feeling overwhelmed and confused. Dr Doty clearly showed himself to be the western medicine healer I sought. I was humbled by his willingness to be a team player, the clarity of his thinking and the fullness of his engagement in every aspect of care. At the end of the week, the other oncologist’s office called to say that I had missed the follow up appointment. Their scheduling desk had written one thing on my appointment card and another in their books. But I had already decided who I wanted to work with. I was already working with him. We had covered a lot of ground in short but critical window of time.

We scheduled the first chemo session to begin on July 14, 2006. Bastille day…My fathers birthday…Powerful and appropriate. I gave myself one week to prepare for the battle ahead, 16 weeks of lethal chemicals designed to save my life

Keep me in your prayers.