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Educating Yourself: A Breast Cancer Survivor’s Perspective

By Anne R. Humphreys

I was diagnosed with breast cancer in May 1999. I was 35 years old. I remember sitting on the couch in my parent’s living room with my mother. We just looked at each other in total disbelief at the news.

“But you look so good” my mother said. “You look really healthy.”

“I feel good,” I said. “I feel healthy.” (I soon learned that one of the real ironies of breast cancer is you can feel and look well and be healthy, but still have cancer. For example, upon hearing that I had been diagnosed with breast cancer, an acquaintance from high school called me and kept repeating over and over “But you’re so healthy; you’re the healthiest person I know” until I got so irritated that I snapped, “So then, now I’m the healthiest cancer patient you know.”)

Sitting on the couch that sunny May afternoon, the only thing I knew was that I had breast cancer. I did not know where to turn for information on breast cancer. Oh, I knew one other thing: I was freaked out.

Over the next three or four weeks, in between a whole series of diagnostic tests and my date with my breast surgeon, I consulted a number of different types of sources for information on breast cancer: Medical journals, books and papers; the clinical material and fact sheets given to me by my doctors; a few web sites; and several newspaper articles. I also had numerous conversations with friends, family, other survivors, and of course, the next-door neighbor and co-workers always had some story or bit medical information to share.

Most of what I found in the breast cancer literature just left me anxious and afraid and I stopped reading. This bothered me and I was still anxious because I was desperate for information about what was happening and what to expect. So three weeks after my initial diagnosis, upon the recommendation of my brother David, I bought the book God said Ha! by Julia Sweeney.

God said Ha! is the story of what can happen to you while you’re making plans on how to live the rest of your life. In God said Ha! Julia Sweeny moves back to LA in 1995 after several years as a cast member of Saturday Night Live (Julia played the creepy androgynous character “Pat”). Less then two months after moving into her new home (her “girlie pad”) Julia’s younger brother Mike is diagnosed with lymphoma: “Eventually the tests the doctors had ordered became conclusive. Mike had lymphoma. Stage four. And there are only four stages.”

Several weeks later Mike moves in and her parents drive down from Spokane, Washington to help take care of Mike for the next nine months. Julia’s other three siblings are frequent visitors.

Ironically, Julia is diagnosed later that year with a rare form of cervical cancer. While this particular form of cervical cancer is not known to be fatal, Julia has to have a hysterectomy and six weeks of radiation to cure her cancer. Upon breaking the news to her family, her brother Mike immediately says “Oh, you just couldn’t stand it, could you? I bet it was hard for you, being an actress, with me in the cancer spotlight all the time!”

The strength of this book is that it explores issues of humor, grace, family relationships, and the importance of attitude in the face of a family tragedy. I read the book in two days. I even laughed out loud. Most importantly though, the story resonated with how I was feeling and gave me a sense of what to expect. I felt better immediately.

Since then, I’ve read well over 20 books written by other cancer survivors. All types of cancer—non-Hodgkin’s lymphoma, prostate cancer, ovarian cancer, throat cancer, etc. The real power of survivor stories in my own treatment has been that these are stories about real people, who share a similar experience, and who have become a model for overcoming obstacles that, frankly, I never expected to face. These stories are often a very good source of survivor-centric explanations of medical and cancer information. Presented in this manner, it is much easier for me to understand my own particular disease.

Listed below are just a few of the stories that have helped me over the past two years.

Cancer Destroys, Cancer Builds, by Stephanie Byram and Charlee Brodsky [http://www.cmu.edu/cfa/design/people/stephanie/]

“I now live with an emotional intensity, full of spirit and hope. I don’t mess around with things that consume my time and energy pointlessly. I keep in mind that loving and laughing are my best healers.” [http://www.cmu.edu/cfa/design/people/stephanie/high/me2.html]
Stephanie Byram was diagnosed in 1993 at the age of 31 with inflammatory breast cancer.
Together with photographer Charlee Brodsky, Stephanie was determined to put a human face to the disease by creating a visual and verbal narrative of one woman’s experience.
Stephanie’s and Charlee’s work challenges societal notions of what makes a woman’s body beautiful.

The Cancer Journals, by Audre Lorde

“My silences had not protected me. Your silence will not protect you.”
Diagnosed in 1979, Lorde had a radical mastectomy.
Referred to herself as a “Black Lesbian Feminist Poet.”
Lorde used her experience to address issues of image, social injustice, mortality, the strength of love and the power and rewards of self-conscious living.

It’s Not About the Bike, by Lance Armstrong

“Hopefully I can prove it’s possible to return to a normal professional life, and maybe I can prove it’s possible for you to be better.”
Diagnosed with advanced testicular cancer in 1996.
Against all odds, Armstrong recovered and went on to win the 1999 Tour de France.

Because Cowards Get Cancer Too, by John Diamond

“In the face of such overwhelming statistical possibilities, hypochondria has always seemed to me to be the only rational position on life.”
Diagnosed with throat cancer in 1997.
Clear-eyed account of his experience and how he learned to live with uncertainty.
Wrote a weekly column about his experience with cancer for The Times (London). [http://www.times-archive.co.uk/JohnDiamond/index2.html]

Wit, a play which won the Pulitzer Prize in 1993, by Margaret Edson

“Once I did the teaching, now I am taught. This is much easier. I just hold still and look cancerous. It requires less acting every time.”
Character Vivian Bearing, PhD is diagnosed with late-stage ovarian cancer.
Unflinching look at the doctor / researcher / patient relationship.

Fighting Spirit, by Nancy Lanoue

“Seven times fall down, eight times get up.”
Diagnosed with breast cancer in 1987, a week before 35th birthday.
To her, “full use” of arm meant being able to do one arm push-ups, to punch with enough speed and focus to hear her karate uniform snap. Full range meant being able to do the Seido version of the roundhouse knife hand block.

No Such Thing As a Bad Day, by Hamilton Jordan

“Unfortunately, I know a hell of a lot about cancer.”
Diagnosed with non-Hodgkin’s lymphoma, prostate cancer, and skin cancer before he was 50.
Mixes his political experiences with his experience treating and fighting cancer.
Urges patients to take responsibility for their treatment and provides a list of 10 tips. [http://my.webmd.com/content/article/1700.50500]

From This Moment On, by Arlene Cotter

“So, it’s official. You’ve been diagnosed with cancer. And from this moment on your life will never be the same... This is the first step.”
Diagnosed with acute non-Hodgkin’s lymphoma in 1995.
Light on text, she uses typography and image to explain and explore the cancer journey.

A real value of reading survivor stories and why they should have a place on your bookshelf is that survivor stories help us to find and articulate our own stories. Telling our own stories gives a voice to our fears and concerns; to be conscious of what has happened; to externalize an internal disease; and to find support from others and to give support to others.

I encourage you to read any one of these stories and to share your story with others who will benefit from hearing your experience.