Deep soul searching causes me to evaluate my personal values and what quality of life means to me.

A Line in the Sand: Quitting the Conventional Cancer Treatment Circuit

July 30, 2011

Subject: a line in the sand

To: theater group

Greetings to my “tiny but mighty” support group,

Along with these group sharings, I have also been processing privately with Catherine [my movement theater teacher] in phone sessions. Through those sessions, I was able to identify that my real fear was not of dying but rather of continued pointless suffering and imposed isolation.

It has only been in the last few years that my mental and physical health (besides the breast cancer) had reached a level where I could finally fully participate in life and in relationships. Some of you know almost nothing about my history while Catherine and Natasha [woman in my theater group] know many of the details. It is hard for anyone to really comprehend the daunting task of beginning your life at age 46. I am 48 but I am counting the last two years. People spend a lifetime building a web of relationships; intricate histories woven together to create a social network and a sense of community and belonging in this world. When I left St. Louis six years ago, I left my whole life behind. I kept in touch with no one. But it was also a statement of leaving the past/suffering behind. And though the impact was not immediately freeing, it did set in motion a process of liberation, which has now been interfered with twice by cancer.

So, anyway, I realize that I get panicked when I think about cancer in the second breast or a metastasized cancer. But again, I realized the source of the fear was not of dying but rather of prolonged suffering and enforced isolation. So this may sound morbid, but it actually calms me. I have drawn a line in the sand. This is as far as I go. Though I know many women live meaningful lives after a double mastectomy, I am not willing to be one of those women. Since a metastasized cancer is not curable, the best that Western doctors can offer is radiation and chemo to prolong life. I don’t have children or a lover that might make that kind of suffering worthwhile. I am still waiting for the opportunity to begin my life. I had just come to terms with the current deprivation in my life, made peace with it, and was willing to ride it to see what the future might bring.

There has been so much anxiety for me about: “Is it really over?” It is recommended that I see the cancer surgeon every six months. For a long while, I will need to see the plastic surgeon regularly. I am also supposed to see the oncologist every six months. In addition, a yearly mammogram for the left breast would be advisable and it would be prudent under these conditions to also have a yearly MRI. These appointments always bring me to a state of panic. All this constant prodding and testing mentally intrudes on my life, and my body as well.

But since I have decided I am not going to fight another cancer, then in theory there is really not much to have anxiety about. I feel very good about the efforts I have put into my life and the world. I do think I could die today in peace, but it is my strong preference to live. (Though if I am completely honest, I think there is a part of me that would be relieved to die. But, as I said, it is my strong preference to live.) But because I have quality of life issues, I am drawing “a line in the sand.” I know if life circumstances change, perhaps I might rethink my thinking.

I don’t know what happens to the soul at death, but it is my sense that spirit is eternal. We all die. It’s not that I don’t think that life is precious, because I do. Despite the suffering, I have found my journey quite fascinating and rewarding in many ways, but I have reached my limit. I have accepted this cancer. I am willing to go through the process and see if I finally get a chance to create a warm, satisfying, supportive, interpersonal life to complement the professional life that I have been working on for decades, but I am not willing to fight another cancer.

I don’t want to have another cancer and I don’t want to live a life that is consumed with excessive testing and preoccupation. The point of all the testing is to catch things early so you can prolong your life as long as possible (via mastectomy, radiation, chemo, etc.) Sorry, but I pass. If I am not going to fight another cancer, then I am not sure why I would put myself through all the testing. Perhaps, I could find some compromise here, where I modify what seems like excessive testing and doctor visits and decide what feels reasonable to me.

I know this e-mail was all about my thinking, but it is also related to my body’s reaction to the surgeries, the radiation, and the loss of my breast. It is not just an intellectual process. It is also a spiritual process, where I have looked deeply within and asked, “What is acceptable to me? What do I want out of this life? What is quality of life to me?”

It is of enormous benefit to me to have this outlet [being able to share my thoughts and feelings with you].

blessings to you all,


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