Seven years ago I sat on the edge of a black velvet chair in a chalk-white, sterile office. My heart clenched as I waited for a doctor I did not want to meet. When the door swung open, a chalk-white radiologist entered and motioned me to sit back. Suddenly I felt trapped in a black and white 16 mm movie of my life, a scary, surreal film–the kind of strange avant-garde ones that Andy Warhol used to make in the ‘60’s. There was no sound but the ghostly white doctor mouthing the words, “You have cancer.”
For one year I struggled. Profoundly aware of my new state. I recall curling up like a child on the cold tile of my kitchen floor and crying. Then traipsing from one doctor’s office to another to see x-rays of my troubled left breast blown up on screens and studied meticulously. Then I faced biopsy after biopsy. These were followed by a failed surgery that allowed me to finally intuit what my care team had known all along. I needed to lose my breasts, and I finally yielded to a double mastectomy. Throughout the journey I wrote copious notes in my bright red “I have cancer” journal. The writing gave me the gift of understanding. A new awareness.
This began my journey of teaching not only cancer patients but veterans and writers in all possible community settings. The rewards of watching these individuals unfold with new stories and new ways of coping were huge. I still thrive and grow from the notes and hugs I receive from my students.
But caught in the dance of awareness, I know that 115 women—and men–die from this terrible disease each and every day. Sometimes I know them personally– and it is like getting endlessly gut-punched. Over and over.
For four years I went to chemo with my cancer buddy, Jen Campisano. She learned she had stage four cancer at age 32. I love sharing excerpts from her blog, Booby and the Beast, with my students. Jen is a breast cancer survivor–an inspiring one. At the same time, I am crushed when I read one of her blogs that shares the losses of her all-too-young friends. Like Adrienne:
“A few months ago, my friend Adrienne was told she had no evidence of disease. She took her little boy to Disney World. But this Saturday morning, she died of metastatic breast cancer that caused her liver to fail. Poof — gone, just like that. Another little boy to grow up without a mom. A dad left to explain how she would have stayed if she could have. Another young woman dead long before she should be. . . And now I am angry, and I am terrified.”
Sometimes these stories rip my heart open. I know we need to do more. I know I need to do more. These experiences make me determined to give what I can-–teaching the power of narrative medicine, giving books or workshops to cancer patients, or by donating my book profits to cancer research. This is why I do what I do.
Please help me. Let’s be aware. Let’s do what we can to help. One of the most powerful insights that I have learned from Adrienne and Jen is that life is short, and we must heighten our awareness, live in the now, and be grateful. Lisa Bonchek Adams said this wonderfully when she was facing the end of her life:
“Find a bit of beauty in the world. Share it. If you can’t find it, create it.
Some days this may be hard to do.