She was diagnosed with ovarian cancer 2 years ago. Surgery and countless infusions of chemotherapy, with no sustained remissions, have not deterred her from continuing to work in her studio. Options for treatment are now limited as is her energy level.
Her doctor has requested a medical humanist consult to assess this patient’s understanding of treatment options and prognosis. “I was not prepared,” she tells me, “to hear my doctor say ‘I hoped I would not have to have this conversation with you.’”
I know this conversation—it’s one that doctors don’t want to have and patients don’t want to hear. “And yet, I knew,” she confesses.
“What did you know?” I ask.
“Over time,” she says, “the talk of cure became less and less until the word just faded from the conversation.”
“Did another word take its place?” I ask.
She pauses to think about my question before answering. “Treatable,” she says. “That’s the word which comes to mind. Up to now, if a treatment stopped working, there was always the next one. I had come to believe there always would be a next one.”
“What are your treatment options now?” I ask.
“I think my doctor said that there is a clinical trial I’d be eligible for but she didn’t sound hopeful. I now find myself confronted with the realization that my disease is incurable,” she tells me.
Treatable. Incurable. I ask myself, what do patients understand these words to mean?
“I now realize any hope of prolonging my life is in my own hands,” she says. On her lap, in her hands, is a book—opened, the title is obscured.
“What are you reading?” I ask.
“Are you familiar with the workings of a macrobiotic diet and its relationship to healing?” she asks. I admit that I am not.
“The diet,” she says, “is based on a book written in the 18th century by a German physician and philosopher, titled Macrobiotics: The Art of Prolonging Life.”
The words “prolonging life” elicit a lilt in her voice. And, I am reminded of what I have come to know throughout my years at the cancer center—for many patients, alternative therapies can serve as a vehicle for hope.
She explains, “The vegetables must originate and grow in your own area to transmit impulses from the sense organs to nerve centers to stimulate your appetite. Also, each vegetable must be cut into creative shapes.”
As a writer I am acutely aware of the impact of words. I hear the presumptive certainty in the word “must.” Is eating vegetables indigenous to your area, each of a different color and cut into creative shapes a reasonable basis for her belief in achieving a cure?
I ask, “Who was it that said artists say things with colors and shapes they can’t find words for?” Without hesitation she answers, “Georgia O’Keefe.” Adding, “Georgia also said, ‘to create one’s world in the arts takes ….’”
Her words trail off. I find myself leaning in—as if I could help reel in the words from her memory. I pick up where she left off and ask, “What does it take to create one’s world in the arts?”
“Courage,” she cries out. “To create one’s world in the arts takes courage!”
“I have a decision to make,” she proclaims. The irony that presents itself goes without saying.
“Do I get up at 5 o’clock in the morning? No, the real question is whether I can get up at that hour. And, if I can, will I have the energy to do all that the author is prescribing in the hope that I can fend off death? Do I really believe it will? Or, should I hope that I am eligible for a clinical trial? And, if I am—do I choose to participate? What would be the deciding factor? How do I decide?” she says, all in one breath.
“Do I choose to spend what time I have left in my studio?” she asks. I am reminded that as an artist she makes a conscious choice to express the inner world of her experience on canvas. There are no given directions to this exploration.
“What do you want to do?” I ask.
She closes her eyes and takes a deep breath. With eyes wide open she asks, “How much time do I have?”
That question hangs in the air as she glances back down at the book in her lap. Then, looking up, she says, “Life belongs to those who are willing to accept responsibility for having it.” I wonder if these are her words or that of the author.
I scan my notes, which will be delivered to her oncologist. My eyes settle on “how much time do I have?” She closes the book. Her work, as is mine, is finished for today. I ask myself, is anyone’s work ever finished?
This blog contains excerpts from my essay Art Informs Medicine, which was published in the Journal of Clinical Oncology (April 20, 2010).
Once again I am moved by the profound simplicity (yes, sort of a contradiction in terms) of these reports. Thank you for this one.
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