MIRRORS AND WINDOWS
A few weeks ago I read this quote by Rudine Sims Bishop.
“Books are sometimes windows, offering views of world…
When lighting conditions are just right, however, a window can also be a mirror…
Reading, then, becomes a means of self-affirmation, and readers often seek their mirrors in books.”
I started to think about about how mirrors and windows work in the experience of an ovarian cancer survivor.
Since my cancer diagnosis in 2005 I have searched for books and blogs, in-person support groups and online groups to find other women diagnosed with late stage epithelial ovarian cancer. It’s not to say that I didn’t have support – my husband was (and is) a loving and supportive caregiver; my children (now grown) will help me at a moments notice; dear friends regularly volunteer to help, even for chores.
But even surrounded by all this love and support I still needed others who “got it”.
My search was specific; I wanted to find my “tribe” that consisted of women:
- Diagnosed Stage 3 or above and were alive 5 years later. (I knew all about Gilda Radner).
- Who were pre-menopausal at diagnosis and who experienced the physical and psychologic consequences of an accelerated menopause.
- Who experienced scalp pain when they lost their hair due to treatment
- Who courageously took off their wig, hat or scarf and ventured out in the world with no hair covering.
- Who felt anxious leading up to their scan. (“Scanxiety” does exist.)
- Who recurred when their CA-125 result was normal. (Mine was 17 up from 13.)
- Who had surgery when their cancer recurred.
- Who experienced an allergic reaction to carboplatin. (I ended up in the hospital after cycle # 12 during treatment for a recurrence).
- Who were so fatigued they couldn’t get out of bed on days 2, 3, and 4 after chemotherapy.
- Who knew the feeling of being a “rudderless ship” when chemotherapy ended.
- Who were afraid to buy a winter coat in case we never got a chance to wear it.
- Who took part in a clinical trial.
I knew to find someone who shared all of what I have been through with this cancer was nearly impossible, but I was still looking for Mirrors.
I did found women who shared the same experiences. We have been moving side by side on this journey. There was Helen and Linda, Lynn and Anne. I started a gynecologic cancer support group at my cancer center and met women treated by my doctors. I reached out to an organization that provided peer support volunteers. I spoke to a woman who lived in my state, and was diagnosed at the same stage. I volunteered with a local ovarian cancer awareness organization. And I tried to learn as much about causes and treatments of ovarian cancer as I could.
But in all my searching do you know what happened? I meet women diagnosed with ovarian cancer:
- Who wouldn’t leave her house without wearing their wig.
- Who were the age of my daughter.
- Who had CA-125 results in the 10,000’s.
- Who never missed a day of work during six months of chemotherapy.
- Who never had any of the side effects I did.
- Who lived by themselves and went to their treatments alone.
- Who never used the word “survivor”, or “fighter”.
- Who dealt with discrimination in health care because they were part of the LGBT community.
I became friends with Rita and Sharon, Pat and Jeanne, Courtney and Jayne. Through my blog I met women in the United Kingdom. Their health care experience (NHS) is very different than ours in the US. Yet, all these women are my friends and also my Window.
Initially I thought I would only learn and receive support from those with a similar ovarian cancer experience. In fact, I have learned that women whose experience is different from mine can enlighten and broaden my knowledge as a woman and as a woman who was diagnosed with ovarian cancer. We are united by our diagnosis yet we are different and unique women with so much to offer one another. This community needs both Mirrors and Windows to make connections, support one another and work together to end women’s cancers.
Globe-athon is proud to partner with Smart Patients, an online community where patients learn from each other about their cancer journeys. On Smart Patients, you can discuss issues raised in this blog post and beyond. Join here: https://www.
