Fighting and Writing

“Write as if you were dying. At the same time, assume you write for an audience consisting solely of terminal patients. That is, after all, the case. What would you begin writing if you knew you would die soon? What could you say to a dying person that would not enrage by its triviality?”
-Annie Dillard

Julie Forward DeMay was 36-years-old and living in Portland OR when she learned that her cervical cancer had returned, this time with metastatic masses in the chest and lungs. On January 1, 2009, she created a blog to tell her story to her friends and family.

I met Julie’s mother recently when we each presented at a conference reminding health care providers to encourage parents of 11- and 12-year-olds to vaccinate their children against the Human Papilloma Virus (HPV). Julie had an HPV-related cervical cancer. Many of my patients develop HPV-related oropharyngeal cancers. With vaccination, we believe that these cancers will someday be as rare as small pox, mumps, or polio.

While Julie wrote her blog, she was also writing a journal for her five-year-old daughter, Luka, and “instruction manuals” for her husband, Scott, and her family members. She was hopeful that the radiation and chemotherapy – and later immunotherapy and clinical trials – would knock out her cancer cells and win the day. For the next seven months, she crafted essays about her experiences with humor, honesty, and a writer’s insight.

Julie had a hard time with treatment. The radiation made her tired. The chemotherapy affected her blood counts. Even as she continued with traditional cancer treatments, though, she immersed herself in vitamins, dietary supplements, Naturopathy, massage, yoga, visualization, meditation, acupuncture, and alternative therapy while she carefully controlled her diet.

The stress of the cancer sharpened her focus as a parent and friend. Her friends supported her with love and soon had planted a garden. She treasured her time with family, friends, and, especially, her little girl.

She wrote about her caregivers: the bad experiences she had with her original therapy and the kindness she experienced with her subsequent treatment. She chewed out her doctor for not returning an important phone call.

In short, she was an advocate in her care. She did all she could to stay well, to focus on wellness, to think about her family, because “I need to be here.”

The battle – and, yes, she viewed her struggle as a battle – did not go well. The “vicious cancer” resisted treatment and by the end of July 2009, she was actively dying. “It’s time for me to make peace,” she wrote.

Julie died on August 10, 2009, two days after her 37th birthday surrounded by friends and family. By then, she had completed her writing, planned her memorial service, and given away her personal treasures. Her mother published her blog essays and a collection of her terrific photographs as Cell War Notebooks. The book wonderfully celebrates the distinction between "cure" and "healing."

Annie Dillard reminds those of us who write to make each word count. Julie’s tight and clever prose shows how that can be done. I encourage you to read her book. We are better for what she has left behind.