Rural Women and Gendered Fields

A Community-Based Workbook for Helping Rural Cancer Patients
Sierra Nevada Memorial Hospital Cancer Center

Final Report (1999)
When women are newly diagnosed with breast cancer, they are faced with extremely difficult decisions about their treatment while trying to cope with the fact that they have a life-threatening illness. They deserve to have as much support and information readily available to help them cope with having breast cancer as possible.

To help respond to this need, La Lobe, a grass roots breast cancer support group in Nevada County, teamed up with researchers from the Stanford University School of Medicine to form the Sierra-Stanford Partnership. This partnership’s main goal has been to create and evaluate the impact on rural women recently diagnosed with breast cancer of receiving a user-friendly workbook-journal that provides facts, figures and personal experiences of other women who have been diagnosed with breast cancer. The hope of the Sierra-Stanford Partnership is to help to reduce the human and economic costs of breast cancer by reaching rural women who do not have access to current forms of education or support, and help them to make the best possible breast cancer treatment choices.

The Sierra-Stanford Partnership has succeeded in meeting the three aims of our pilot study. First, we recruited and assessed the needs of 100 rural women recently diagnosed with primary breast cancer so that we would become better informed about their needs in order to refine the workbook–journal. Second, we developed the journal, entitled One in Eight,” which addresses such topics as how to relate to doctors and medical technicians, how to talk to family and friends, and how to cope with hair loss, energy loss, and other side-effects of chemotherapy.

The journal includes poignant stories and provides space for personal reflection, as well as information about local and regional resources to help direct women in their search for education about breast cancer and its treatment.

Third, we evaluated the effects of this workbook-journal on distress and coping among women with breast cancer. We found that women who were randomly selected to receive the journal compared with women who did not receive it, showed a significantly greater reduction in their traumatic stress symptoms related to having cancer. They also experienced significantly greater increases in fighting spirit toward having breast cancer as well as greater decreases in feeling fatalistic regarding their breast cancer. We want to refine the workbook-journal to better address the concerns of rural women as well as other potentially socially isolated women living with breast cancer, including those who are physically disabled, of ethnic minority background, of lesbian sexual orientation, and/or who are aged (over 65 years old). We hope to evaluate its impact using a Health Maintenance Organization (HMO) setting for distributing the intervention to these women.

Well, I have gone to the city and they have real doctors there. I am happy to report that I was wrong, and that my breast cancer team does care about more about me than just my left breast. They all listened, answered questions, reassured me, and brought on new team members to make sure I am healthy and ready for the surgery. They are, all but one, women, and I realized that these women have entirely different listening and responding skills than the man, and I prefer them to him. I now have a new primary care provider, and, even though I live 150 miles from her office, I feel for the first time in 5 (or more?) years that I am in good hands. The doctor at my last appointment in the city said, “well, are you about done with those doctors out there in (my town)?” And I am. I realize that a large amount of the resentment that I’ve had about doctors is due to the fragmented type of medical response I’ve had from the local clinic where doctors come and go, order lots of tests, but don’t follow through with patients to a diagnosis and treatment.

I have tried to hang on to a local doctor because I live alone in the country just one mile from the clinic and hospital. It has really been a long struggle, and I should have given it up sooner. Unfortunately, it took breast cancer to force me to let go and move on.

I wrote earlier that last month when I was hospitalized overnight with pneumonia, the local woman doctor refused to look at my recent medical results. I asked her to please, please look at tests I had within the last couple of weeks (that were only reviewed by a physician’s assistant who was just rotating in to help out and is not even on the staff). The doctor scolded me and said, “too many cooks in the kitchen!”

Last week when I was leaving the PT room at the hospital where I exercise in the mornings, this doctor came in dressed in jeans and a red felt cowboy hat. The hospital and clinic staff were having “Cowboy and Indian Dress-up Days.” I. Am. Not. Kidding. When I saw her, I had a huge urge to take off her hat and slap it around her face and yell, “there are NO COOKS in your fricking kitchen! I have breast cancer, and you are an idiot!”

I am really looking forward to getting past this. I have to. I need to. I will. (Whew.)

“Dancing Healer” was the name of a book about a medical doctor that went to practice on an Indian reservation where he was introduced to the concept of healing, which included an individual’s ability to listen to and understand body processes and be in control of them, and participate with the “doctor” in healing. The doctor didn’t believe it until confronted with evidence, and after that he was able to describe the difference between a doctor and a healer.

Doctors are not healers. If we had healers participating in our wellness, I would have paid more attention to the signals I have been getting: a sharp pain that started in my left breast last winter, like a signal to my brain. My certainty that there is a connection between what I eat and the pain in my side which I “see” as undigested fat gathering on my liver looking for a missing gall bladder to process it, until it has to go somewhere. The day I looked at the skin on the back of my hands and thought, “I have cancer” because it looked the way I clearly remembered the look of the skin on the face and hands of a man that I worked with in the 70s. The feeling that groups of people who have died were gathering around me.

If we had healers, they would encourage us to tell them about these signals and thoughts. To tell the stories and the intuitive signs. They would use these to help us heal. I would have told them these things.

Instead, I only talk to the doctors about the connection between my pains and what I eat, and I have begged for their attention and help with this for the last several years, until recently I informed the latest in a series of local clinic doctors that I was giving “you people” one last chance to help me figure out what was wrong with me, and the next place I was going if they didn’t was to the acupuncturist. Several thousand dollars worth of tests later, waylaid by breast cancer, I still have no answer to this question.

Now the breast cancer surgeon is scheduling me for appointments with “the team” which does not include anyone who is remotely interested in any of my other medical history or other symptoms or health issues I have been confronting. Nope – the breast cancer doctor said – we are looking at your breast. I had to argue and argue again the point of having someone look at me as a whole entire complex human being body and not just a left breast to get her to agree to add an internist to “the team.”

That is so far from encouraging us to listen to our bodies and describe what they are telling us, I am so offended by this type of medicine (and our lack of access to even this type of care) that I can barely be civil to doctors. That isn’t helpful, or useful, or healing. What is the alternative?

When I was in the hospital with pneumonia after having the last round of tests, I asked a doctor to please look at all my new test results in conjunction with this new event. “Oh! Too many cooks!” she said, as she was just treating me for pneumonia. No, I told her - the trouble is, there aren’t any cooks in the kitchen.

“Domestic terrorist are at it again, flying under the radar as they renew their campaign of intimidation at women’s clinics that offer abortions. While violence against such clinics has declined since the madness of the 1980s, this marks the first use of an explosive device, an IED no less, since the recent Supreme Court decision.” From Daily Kos

“An explosive device was found Wednesday in the parking lot of an Austin, Texas, women’s clinic that provides abortions. After inspecting the device, the Austin Police Department said in a statement: ‘It was determined that the package … would have caused serious bodily injury and/or death had it functioned.’ Luckily, the bomb didn’t function and was disarmed by a robot, reports the Associated Press.

“Some argue this is a sign that antiabortion forces have been bolstered by the Supreme Court’s recent decision to uphold a federal abortion ban. ‘The extremists in the anti-abortion movement have been emboldened by the latest Supreme Court decision,’ said Katherine Spillar, executive vice president of the Feminist Majority Foundation. ‘These domestic terrorists will continue to attack women’s health clinics across the country until their financial and support networks are closed down.’”
http://www.salon.com/mwt/broadsheet/?last_story=/mwt/broadsheet/2007/04/27/abortion_update/