The day after Christmas, my daughter and I were dining out, basking in the relief that the holiday demands were over. Shortly after we ordered, a familiar but long-forgotten face smiled at me and in a moment, Joanne, an energetic 35ish-year-old, sat down at our table.
When my daughter was in kindergarten, she learned about music from Joanne. The 12 years that have passed since then didn't leave a mark on the teacher's unwrinkled face.
Joanne oo'ed and ahh'ed over how my daughter had grown and inquired about my son. She then reported that she hadn't yet read my book about new ways of treating cancer, but intended to. I'm always sweetly surprised when people say that, but I don't carry expectations that they'll actually do it. On the face of it, books about cancer aren't usually the most uplifting. (Although I'll now take the liberty of saying mine is very uplifting.)
"Thanks," I said nodding. A quiet moment passed between us as her upbeat demeanor ratcheted down a notch.
"There's a reason I'll be reading your book. I've been dealing with a little cancer of my own."
I was immediately struck with how she worded the news, how good she looked and how young she was to have to travel the enigmatic terrain of the disease.
"It's a rare type of lymphoma that's manageable, but..." She smiled and said in a lower voice, "It's incurable."
For the thousandth time, I felt the invisible hammer of the cancer culture crashing down upon me. I took a deep breath so as not to shout my response. Instead, I calmly urged Joanne to consider that the cancer industry has grown a serious crop of words that do nothing to help us believe in the possibility of healing. "Incurable" is a great example.
If you subscribe -- even remotely -- to the power of the marriage between our minds and bodies, then you too might cringe at the notion that a condition is incurable. Some would say that bypassing the term means you're not facing reality. Those who know better say that "incurable" may simply mean that conventional and drug-based medicine has exhausted what is has to offer, thus rendering the grisly prognosis.
I think doctors should do away with the word completely. It's far more honest and accurate to say, "This is a mystery to us, and we're out of ideas. But perhaps there are other protocols we don't know about that are available elsewhere that can help. As for us, we've done all we can."
Another word that haunts me is "survivor." A lot of people like the word, which is fine, but if I call myself or someone else a survivor, I'm forever attaching us to a disease. I don't want to be defined that way. I don't want people to meet or see me and have the word "cancer" come to mind. That would completely undermine the healthy three-dimensional woman, humanitarian, author, mother and wife that I am. These are labels I can wear without the emotional association of disease and demise.
Plus, let's face it: The rigors of conventional treatment are usually challenging at best, barbaric at worst. They are effective for some but ineffective for way too many. It's frequently the treatment we survive... or not. Why would I identity myself with the emotional trauma of the months of anguish and physical pain I had to endure? Call me a rebel, irreverent or a thriver, but not a survivor.
There are other words we can pitch into the ethers rather than embedding them into the frightened minds of those who wonder if their life is in the balance. "Remission" means it'll probably come back. Think about what that does for the mind-body relationship. "Cure" means disease is solely a biological condition, but science is now recognizing that the environment we create within our bodies -- through the quality of air, food, water and thoughts we take in -- impacts our wellbeing. And "patient" means we're sick and under the care of a doctor. That's true, but we are people first with emotional, spiritual and intellectual perspectives that all go into the mix. These things must be considered to have a holistic experience of healing.
For now, Joanne's conventional treatments are keeping the lymphoma in check. That's a huge blessing for her. But she has already examined how she wants to go through the cancer journey. Doctors told her she'd need treatment for the rest of her life, but as she told me this, she shrugged her shoulders, smiled and said, "Maybe."
Then I smiled. Maybe, maybe not. But rather than patently accepting that there's only one way to approach this disease, Joanne has opened up to the infinite possibilities that are available to us if we're willing to change our vocabulary and brave enough to ask questions outside of the box.
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Leigh Fortson has been writing and editing books about health and nutrition for decades. She is the author of Embrace, Release, Heal: An Empowering Guide to Talking About, Thinking About, and Treating Cancer (Sounds True, 2011). To learn more, go to embracehealingcancer.com.