When I was in graduate school and the mother of 2, in the 1970s, I took my first women’s studies course. Part of the agenda was looking at language, and understanding how it reinforces our own self-images as women. For example, let’s look at history. All of us have had countless courses in history, but how many of us can name 5 women important in American history? Students always come up with the name of Betsy Ross but cannot come up with another. Look, for example, at the word “history” (potentially suggestive of “his story”) and think about the majority of books we read during our elementary, secondary, and higher education. Were they about women as well as men?
Likewise, the American textbooks throughout my undergraduate studies included mostly white male writers, although Native Americans were here long before Caucasians, and they had their own stories, prayers, and songs as did women of various races.
My point is that if the female story is absent in our education, how can women construct their own identities and actively direct the course of their lives? That is why women’s studies became a discipline—to flesh out the whole picture. However, this means that some of us may unknowingly have had to embrace the concept of always putting others before ourselves—being kind, demure, and passive, at least historically, even if we sometimes needed to be otherwise.
In the past 8 years—since my diagnosis with grade 3C ovarian cancer—I’ve had countless hours to question my own identity, and how it had been shaped by others. When my male gynecologist performed my first pelvic exam, I said, “I’m a former nurse, college professor, and researcher, so I will be asking lots of questions.” He said abruptly, “I will be asking the questions!” In that split second, I knew he was not the doctor for me; he clearly needs to be in control, and I prefer to control my own body and disease. For my assertiveness, he nicknamed me “Trouble.”
Why am I starting my memoir about my cancer journey by telling you this story? Because I think that all patients with cancer should be in charge of their own bodies and be on the same team with their doctors to control their disease. Later in my book, I share the negativism I heard from most of the male doctors I had, as well as their lack of empathy. As Ms. Trouble, I sought several opinions and finally found a doctor who became the leader of my team. Without the hope she engendered in me, I would not have survived.
Having hope is so necessary! Having attended many ovarian cancer support meetings, I’ve heard countless women complain about their doctors either not sharing information with them or being only negative about their future, telling them that nothing more could be done for them. Such behavior by a doctor is very difficult for a cancer survivor to overcome.
Hearing this evidence from so many patients, I wanted to write my story—a woman’s story—and I wanted to share how maintaining control of my disease has helped me cope during the past 8 years.
I will not be a statistic defined by others, but by myself. Doing so means actively seeking information, building a medical team with you at the center, and finding what helps you heal. For me, healing means writing, painting, supporting myself and other survivors, and incorporating the latest research into my blueprint for living.
In this memoir, I take readers along on my journey from fear, despair, and depression, to healing, hope, and advocacy through stories, anecdotes, and 18 bright-colored paintings of my double, AltheaAnnette (Althea is from the Greek word “althos,” which means “healing”).
The painting on the cover of my memoir is titled “A Fire in My Belly.” Because I have been so fortunate to survive, I have used the “fire in my belly” to become an advocate for the Clearity Foundation, a nonprofit organization that provides recurring ovarian cancer survivors with molecular profiles, information, support, guidance in finding the most appropriate treatment, and assistance in locating clinical trials.
In this memoir, and on my ovarian cancer website, www.altheaannettedesigns.com, I share my method for coping, not as a prescription for what ovarian cancer survivors or any survivor should do, but as an example of what I did and will continue to do to survive. Healing is not just about the physical concerns, but also the psychological and emotional.