Blog Post By: Jose Dominguez
“Lying supine, the technician uses my mask to bolt me to the treatment table. After he leaves the room, I feel alone, and at first, afraid. I see and hear the radiation machine move around me, but feel nothing. Minutes later, the door opens, and the mask is unbolted. This process is repeated almost daily for 2 months…After 2 weeks, the skin on my neck and inside my mouth becomes red, sore, and dry. My sense of taste changes, it becomes difficult to eat. By the end, the technician has become my trusted friend, I cannot predict the future, but I feel less afraid, my Courage Unmasked.”
Ms. Barbara “Cookie” Kerxton did not begin life with her sights set on becoming a philanthropist or an advocate for Head and Neck Cancer, but a sore throat that would not go away and a chance encounter with Diane Rehm changed all of that.
In 2002, Cookie had surgery to remove polyps from her vocal cords. Thankfully, they were benign. Following the surgery, her doctor prescribed exercises to be done in the shower to strengthen her voice. She did them as instructed, but noticed her voice getting worse and worse. The doctor, however, advised her “not to worry, it’s not malignant.” In late October 2007, she bumped into Diane Rehm, the radio personality. Ms. Rehm often talked about her voice problem and treatment. Cookie introduced herself and shared her worsening hoarseness. Ms. Rehm immediately gave Ms. Kerxton the name and number of her doctor, Dr. Paul Flint, at Johns Hopkins Medical Center and told her to see him.
She met with him that November, 2007. He ran some tests on Cookie and subsequently performed surgery. In January 2008, she learned she had throat cancer. In February, her treatment began. Every morning, Monday through Friday, for seven weeks, she entered Inova Fairfax at 9 a.m. sharp. She entered a room, and a radiation technician bolted her down to the table with the help of a white mesh mask perfectly molded to the contours of her face. Wrapped tightly around her head and neck, the bizarre-looking armature ensured that powerful radiation beams targeted her cancer in the exact same position each session. She experienced the mask’s claustrophobic effects, undergoing twenty-eight radiation treatments for vocal cord cancer. On her last day of radiation, she rang the bell—a rite of passage for patients who make it through treatment—put the mask in her car trunk and took it home.
As she drove him, despite the diagnosis and the weeks of radiation treatment, she felt lucky. She was fortunate to have had the finances and good health to survive her radiation treatment for cancer of the vocal cords. As she convalesced, she realized that not everyone is quite so lucky. Cookie had an idea. What if the mask patients wore for their radiation treatments could be transformed? What if she could persuade her friends in the local artist community to take these masks and create art from them? Could she then auction off the masks and give the proceeds to cancer patients needing financial help? What if she could provide comfort to cancer patients and their families with money for treatment and raise awareness about Head and Neck Cancer with the general public?
That day, the idea for Courage Unmasked, which would become an art exhibition, a fundraiser, and a movement, was born. Movements, however, do not belong to any one person. Ms. Kerxton set out to engage her artist community and other Head and Neck Cancer survivors so that they, too, could be part of the solution. Her first connection was with another survivor, Carol Kanga.
Carol Kanga was an artist and Head and Neck Cancer survivor. Cookie did not know her, but they shared the same radiation oncologist. She reached out to her with the idea of artists playing the role of health activists and philanthropists. Carol loved her idea. She, too, felt lucky and a commitment to play a role in helping improve the ability of others to have access to money for things that insurance and co-pays cannot cover. She volunteered to Co-chair the event and created a mask for the auction. Cookie now had two artists, her and Carol, but she would need many, many more. They began to reach out to other artists. Artists soon lined up in droves to help them.
The first-ever Courage Unmasked art exhibit was presented at the Katzen Art Center in Washington, DC, in November 2009. The exhibit consisted of over 100 artworks incorporating radiation masks previously worn by Head and Neck Cancer patients. The sculptures in the exhibit ranged from very simple to highly ornate. The themes of regeneration, healing, and comfort ran throughout the exhibit, but there was also the theme of grit, determination, and bravery. Ms. Kerxton raised over $100,000. Those funds became the seed funding of what would become 911 4HNC.
Today, the 9114HNC Fund for Head and Neck Cancer is a unique nonprofit fund created by Ms. Kerxton that is dedicated to granting financial aid directly to patients who have or had Head and Neck Cancer. It is 100% volunteer driven and has a Board of Directors that consist of the leading radiation oncologists in the DC Metro Area. Unlike many other foundations, 9114HNC does not give dollars to research. 9114HNC supports only individuals and families. The money goes directly to help individual patients struggling to make ends meet, whether for taxi fare to the hospital or groceries. It strives to improve the quality of life—awareness of the critical needs of people undergoing treatment for head and neck cancers.
Many of us have encountered obstacles in life and decided that they were too big to overcome. Cookie turned the most difficult days into an inspiration that has touched countless other lives for the better. A disease like Head and Neck Cancer does not just sap a body of its health. It saps a soul of its agency. Ms. Kerxton was diagnosed with Head and Neck Cancer and regained her agency and through her work has raised money, helping countless patients do the same and inspiring other communities to create their exhibits.
For more information about 911 4HNC visit: https://courageunmasked.org
Jose Dominguez is an Executive Coach with over 17 years of experience as a Nonprofit Executive. He is the proud father of two sons (Joshua and Owen) and husband of 28 years to a riveting wife, Lisa. Jose lives in Silver Spring, MD.