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Cookie Kerxton was diagnosed in early 2008 with vocal cord cancer. While undergoing radiation treatment, she felt compelled to find a way to ease the financial burden on other head and neck cancer (HNC) patients as insurance does not adequately handle all pre and post treatment needs.

Kerxton is an artist who likes to experiment with new materials and art forms. Her work is displayed in juried shows in Washington DC, Maryland and northern Virginia and hangs in private collections and commercial offices.

Her love of and networking in design and abstract painting led the way in enlisting other artists to turn the HNC masks into works of art. The designed masks are auctioned off and the monies help grow the 911 4 HNC 501(c)3 fund Cookie established for directly helping other HNC patients and their families.

As a result, the Courage Unmasked: 911 4 HNC was launched. Fundraising events are held to raise awareness of and monies for this preventable cancer. More than 55,000 Americans will be diagnosed with HNC this year of which 13,000 will die.

The following video highlights head and neck cancer risk factors, the radiation process and the role of the mask. Cookie comments on the over 100 artists who transformed masks for her HNC Courage Unmasked initiative.

Fulvia Musti Ciarla produced and directed this video and Per Hoel was the editor, videographer and graphic designer.

Cookie, can you tell us about your personal experience with head and neck cancer? Did you know anything about head and neck cancer prior to your diagnosis?

I knew nothing about Head and Neck Cancer (HNC) except a good friend had a friend who was dying of throat cancer which caused her to nag me a lot. I had been seeing an ear, nose and throat (ENT) doctor about my sinus problem and had sinus surgery. In 2002, he removed some polyps from my vocal cords but they were benign. He even had me do exercises in the shower to strengthen my voice which was getting worse. He continued to say “not to worry, it’s not malignant”.

In late October of 2007, I had an appointment with the same ENT but bumped into Diane Rehm at the beauty parlor that morning. Diane has a two-hour program on NPR every day and often talks about her voice problem. I introduced myself and told her my problem. She immediately gave me the name and number of her doctor, Paul Flint, at Johns Hopkins and told me to see him.

I cancelled my afternoon appointment and called Paul Flint. I saw him in November and had surgery in December. He initially thought it was a virus. After waiting a long time due to the holidays, I was in shock when I got the results on January 2, 2008. Instead of driving from DC to Baltimore every day for radiation, he recommended Paul Bajaj, who had been at Hopkins, but was now at Inova Fairfax, much closer to me and where I had actually worked for 26 years. I, like the majority of people I have met, knew little about HNC and very, very few knew that a mask was used for the radiation.

Your idea of Courage Unmasked: 911 4 HNC, your 501©3 fund that you created, was and is an artistic and financial success. The fundraising process was very successful and is continuing to raise awareness of this cancer. The priorities of this fund are in line with the mission of the Head and Neck Cancer Alliance, “dramatically shift the stage of discovery of head and neck cancers through united and collaborative efforts in prevention, early detection and research.” Do you feel that your collaborative efforts have been accomplished?

The priorities of 9114HNC (Help for Head and Neck Cancer) and the HNCA (Head and Neck Cancer Alliance) are alike except for the research part. I decided that there was plenty of research taking place such as Joan’s Fund in Columbus, Ohio which I am familiar with. However, there was no fund for helping those in financial need. I knew that insurance did not cover much pre and post treatment needs.

I feel that we have raised awareness about the disease itself but, more importantly, the part that the human papilloma virus (HPV) plays and why oral cancer is on the rise. I encourage everyone I meet to get the vaccine, if they are in the right age group, or if they have children, to have them vaccinated. I was at a cancer briefing last week and was told that the optimum age for boys and girls is 9-13. I have embarrassed many young people when I tell them about HPV and oral sex not being safe sex.

Your idea of auctioning artwork, as in the head and neck mask, has been endorsed by many medical colleagues and others. Have other cancer organizations approached you to provide any artistic strategies they could use? Do you still auction off the masks annually?

We have a trademark and copyright on Courage Unmasked and 9114HNC and our logo. If any other cancer organizations wish to do an event in their city, the event planner for the 2012 Courage Unmasked event, Jonathan Willen, put a book together which is a template of how to do a Courage Unmasked event.

Introduction to CURB FINALWe do not have an auction every year as it is very expensive and we need a new venue in the DC area. We are having an event in Rehoboth Beach, DE. in September of 2015, partnering with the Beebe Hospital Fund in Lewes, DE.

Running this fund is a full-time job even when I am not planning an event. I need to say that Jonathan has been working as hard as I have been, pro bono. If not for him, I would have thrown in the towel. He is incredible. He took care of shipping the masks and everything else we needed to Scottsdale and to the Astro Convention in SF. I feel very blessed to have found him.

I noted that you and Carol Kanga, a HNC survivor, represented your nonprofit at the Multidisciplinary Head and Neck Cancer Symposium February 20-22, 2014, in Scottsdale, Arizona and a later one in September of this year. If someone is interested in buying a mask or learning more about your organization, how they can do so?

Carol was my co-chair at both of the DC Courage Unmasked events. Carol and I are extremely different but work very well together. I feel blessed to have her in my life also.

If anyone wants to buy a mask still available, they are shown on the website, along with the book and the poster. The poster was used as a marketing device and helps to spread the word. The book serendipitously shows up in many surprising places. The masks can be purchased on the Courage Unmasked website along with any information wanted.

I have noted that HNC patients feel one of two ways about the head and neck masks: they cannot wait to throw them out or they feel it is a symbol of survival. Do you feel that by transforming the mask into art, it provides a therapeutic expression for HNC patients to move through their cancer journey?

Many people have contacted me about sending a mask belonging to a family member, friend or their own and do so to help others financially or to make lemonade out of a lemon. Several have told me that they enjoyed destroying their masks.

What would your message be to head and neck cancer patients who are undergoing treatment now?

I would tell patients with HNC that it is one of the most curable cancers even though the side affects of the radiation can be debilitating. I feel so lucky because I did not suffer as much as most HNC patients and therefore, I am passionate about helping others not as fortunate. I would advise them to tell others, rather than keep it a secret, so that word will get out about the vaccine which helps with prevention and to be aware of symptoms. Early detection certainly improves the prognosis.

In summary, I feel very lucky in many ways, starting with bumping into Diane Rehm and getting to Paul Flint. Not sure what would have happened to me with the “not to worry” doctor. Paul Bajaj has been an incredible help along with Carol Kanga and Jonathan. I have met many wonderful people because of my illness. I cannot forget the 171 artists that donated their time and money to transform these radiation masks into works of art that are displayed in private homes, offices and medical centers.

 

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