Friday, March 27, 2009

Make a Choice Make a Difference

One morning in August of 2001, I was taking a shower just like any other morning. Except for on that morning, I discovered a lump as I brushed soap away from my skin. Less than a year prior I had a routine baseline mammogram which was negative, so finding a lump just under the surface of my skin was somewhat disconcerting. By the time the subsequent examinations and tests were completed, it was just a few days away from Christmas. My surgeon called for me to come to her office so that she could discuss the test results with me. I was 36 and had no family history of breast cancer. That night I was told that I had an aggressive form of breast cancer. As I sat there in shock listening to her go over the pathology report and describe the next steps, I remember her words “this doesn’t have to be a death sentence”.

As part of the staging process, patients will have diagnostic tests done to see whether the cancer has spread to other areas of the body. While waiting for my bone scan, I sat in the patient waiting area along with other cancer patients. One woman looked over at me and asked what I was having done. She openly told me that she was stage 4 and this was her third time being diagnosed with breast cancer. She told me “not to be afraid and look at this experience as a gift”. At some point in her treatment she had a bi-lateral mastectomy without reconstruction. I know this because she told me as well as showed me, right there in the waiting room. Her willingness to be herself without shame or embarrassment helped me understand that beauty was more than skin deep. Her beauty came from within. Meeting her gave me a sense of confidence and hope without fear because knowing all that she had been through; she was still fighting the battle and doing it with grace and without fear.

Since the initial diagnoses, I have had 8 surgeries, 24 weeks of chemoimmunotherapy, 7 weeks of daily radiation, 5 days of in-patient hospital care, adjunct hormonal therapy, and multiple diagnostic tests to determine the staging of the cancer. Why so many surgeries? Well, in November of 2003 I had a recurrence. Same breast, same cancer. It had survived surgery, chemotherapy, and radiation. Specialists debated whether the cancer had metastasized to the skin just above the incision area. One specialist thought that within a year the cancer would be somewhere else in my body. Hearing that was probably the lowest moment in my life. I remember walking to my car, thinking that I was going to die. That thought was quickly replaced with another thought, “I can believe that I am dying and act like it or believe that I am alive”. Living is a choice and from that day forward, I decided to make a choice and live.

Choosing to live doesn’t necessarily mean that life is without challenges. There were other challenges associated with having breast cancer. Some of these challenges included finding relevant information to make informed decisions about treatment options for young women with breast cancer, finding other young women who had gone through or were going through similar experiences, juggling the demands of working full-time with getting well, and dealing with the long-term side effects of treatment, such as hypothyroidism, memory issues, early onset of menopause, and the physical appearance of scarring from a bilateral mastectomy with reconstructive surgery.

This experience has shown me that being a young, working woman with breast cancer presents unique challenges and emotional hurdles. Looking back on this experience, I sometimes wonder how it compares with that of other working women my age who have gone through similar ordeals with breast cancer. I am also curiosity as to whether or not other young, working women with breast cancer are treated in the same fashion as their older counterparts.

Despite my challenges I look at each day as a gift. I have completed two marathons since my original diagnosis, will be training for the Iron Girl Triathlon coming up August 2009 in support of the Ulman Foundation, and I am currently pursuing my PhD. My curiosity about the experiences of other young, working women with breast cancer is driving my dissertation topic. It is through the exploration of these experiences that this study will examine how cancer treatment centers cared for and served the needs of these women with breast cancer.

I hope that sharing my experience makes a difference, just like the women in the waiting room made a difference to me. If you would also like to make a difference by participating in my study, I am looking for 12-16 women who were diagnosed with breast cancer before the age of 40 and who were also working at the time of diagnosis to participate in my study. During the spring of 2009, I will be conducting interviews with these women. The names of those participating in the study will remain confidential. As a participant in this study, you will be asked to take part in a one-hour recorded interview conducted by me. The interview will be scheduled at your convenience and at your location of choice, either face-to-face or over the phone. Each participant will be required to sign an informed consent form, that must be returned to me prior to conducting the interview.

If you fit this description and would like to be a participant of this study, please email me at bcsurvivornetwork@comcast.net. I would forward to seeing you at an upcoming Ulman Foundation event.

Most Sincerely,
Joni Dowling

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