Kimberly Flowers didn't worry too much about the white spot on her tongue since a similar one went away on its own years earlier. But when it turned red and sore five months later, her dentist sent her for a biopsy.
She was floored by the diagnosis: tongue cancer. "They told me, Kim, you've been struck by lightning."
Flowers, 47, is referring to how she didn't have any of the risk factors for head and neck cancer-primarily tobacco and alcohol use, but also, increasingly in males but also females, the human papillomavirus.
Head and neck cancer rates on the rise
More than 4,300 Canadians will develop a cancer of the head or neck this year, and 1,610 will die from it, according to the Canadian Society of Otolaryngology Head and Neck Surgery.
"Cases are on the rise for head and neck cancer, which is also one of the most devastating kinds of cancer you can get," said Minn Yoon, a dentistry professor at UAlberta.
"There's not enough research being done into how this very invasive cancer impacts patients. Many side effects that result from the treatment can't be hidden. Faces and voices can be altered. There are highly visible scars. Even beyond what is highly visible, the invisible effects of this cancer can be more devastating. Imagine not being able to eat another Christmas dinner, enjoying conversation and laughter. Now you can only eat pureed foods and not talk or laugh while you eat because you may choke," she adds.
Patients and artists express unique experiences
Yoon's own research into patient and family experiences with head and neck cancer compelled her to find an effective way to help raise awareness about the patient journey, and ensure patients like Flowers were active participants in contributing to a solution.
The result is the art exhibit FLUX: Responding to Head and Neck Cancer at dc3 Art Projects in Edmonton, which opens today and runs until Jan. 21.
"For the past year, a group of Edmonton's leading and emerging contemporary artists have been working with UAlberta's researchers and medical professionals, and directly with patients, to develop works that effectively communicate the uniquely profound, often hidden, experiences of head and neck cancer patients," said Yoon.
FLUX: Responding to Head and Neck Cancer
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Participating artists in the exhibit, curated by UAlberta art and design professor Lianne McTavish, include Ingrid Bachmann, Sean Caulfield, Jude Griebel, Brad Necyk, Jill Ho-You and Heather Huston. FLUX features a diverse range of contemporary art including video installation, photography, print, sculpture and drawing.
The healing power of art
Working with the artists, patients were empowered in fresh and unexpected ways to explore their experiences as they convey the confusion, catastrophe and hope of head and neck cancer.
"Being involved has helped me in surprising ways," said Flowers. "I realized there were things I had not processed emotionally and psychologically from my cancer."
One particular piece of art called Veils by Jill Ho-You, which creatively used actual diagnostic materials in images of faded body parts, helped Flowers realize how disconnected she had always been from her own body.
"Seeing that piece as it was created, it struck me that I need to renew focus on my physical self and give it extra care and attention. The art also helped me understand experiences I felt that there simply aren't words for."
After Flowers was diagnosed, she underwent major reconstructive surgery and radiation.
"Really for the first year and half, I had to learn to speak and to swallow again. I had extensive therapy."
She said she wore scarves everywhere to hide the damage of the radiation to her face, and she said her jaw has permanently changed its shape. "The public just isn't aware of the devastating impact."
Yoon said the goal of the exhibit is to help give the public a space to come to ponder health and illness but also one's own humanity and compassion.
"I hope this exhibit encourages dialogue around how people experience life-altering illnesses such as head and neck cancer, and how each of us, as part of the society that those with illness live in, can impact another's illness experience."