Take Control, or Be Controlled

“Hank” Deneski, an 11-year survivor of stage IV inoperable squamous cell carcinoma on the base of his tongue, has an urgent message for others diagnosed with an oral, head and/or neck cancer, “Take control or be controlled.”

Hank, now a motivational speaker and trainer, is Founder of WesternOhio Oral, Head and Neck Cancer Support, and dedicates his time to coordinating five annual FREE HNCA Oral, Head and Neck Cancer Awareness® screenings for uninsured/disadvantaged in Western Ohio. He also directs an extensive awareness and educational program and tirelessly focuses his energies on not only raising needed funds, but works to save lives through promoting early detection and treatment.

Oral, head & neck cancers are often debilitating, and Hank refers to them as an “orphan” cancer because it is not as well publicized like other cancers. Treatment, as he well knows, may result in disfiguring surgery, loss of the ability to eat or speak, and with multiple treatments resulting in difficult, long lasting side effects that may result in a “new normal” in living.

Diagnosed in 2005, Hank’s ENT advised surgery would be debilitating – removal of his tongue, esophagus, and voice box — creating a nearly impossible recuperation. As a result, both chemotherapy and radiation were prescribed. During all of it, Hank never asked “why me?” but with herculean determination proceeded with “what’s next Doc?” Forty-eight hours of cisplatin-chemo infusions, 77 radiation treatments, 15 months with a feeding tube, ongoing xerostomia, chemo brain, and neuropathy, other side effects, many which continue to this day, Hank emerged fighting for others as well as himself.

Hank transitioned from a career as sales manager and trainer, utilizing all of his life skills, to his new Mission in Life to educate others, including dental and medical professionals, to provide so many with the opportunity to be screened as well as to support patients, survivors and their caregivers through the treatment process and beyond.

About a year following his own cancer treatments, Hank attended the Support for People with Oral, Head and Neck Cancer (SPOHNC) Conference in New York where he learned about the lack of support from insurance (dental vs medical) and gained information about support, alternative effective treatments for side effects, and other subjects. This affected him deeply and motivated him to persevere.

Invited to the inaugural LIVESTRONG Summit in Austin, Texas in October 2006, Hank and other delegates brainstormed what survivors need/want to know when diagnosed and throughout treatment. The delegates were challenged to write mission statements they would take home to incorporate into their communities. Hank fulfilled his mission early on by creating an oral, head and neck cancer support program for survivors and caregivers in Western Ohio and instituting free annual screenings to the underserved in Dayton & Montgomery County, Ohio.

Seeing the need for accurate information, regular screenings and healthcare supports, Hank took it upon himself to ensure that people in Ohio’s Montgomery County were afforded these opportunities, as no organizations appeared willing to help.

Survivors in Dayton, Ohio also needed a support system, and Hank then went about establishing the WesternOhio Oral Head and Neck Cancer Support in August 2007. The now 9-year-old group, has approximately 100 members and meets the second Monday of every month. This self-driven group assists and supports each other, hears speakers regarding nutrition, treatment options, caregiving, and other topics.

In 2009, Hank faced another very tough road with emergency surgery for Ludwig’s Angina, resulting in overnight hospital stays, total extraction of all teeth, removal of part of his jawbone, implants, oral prostheses, and 50 hyperbaric dives.

Finding his strength by helping others, Hank continued in his mission to serve and educate the disadvantaged. In April 2011, numerous Ohio oral, head and neck cancer screenings were established with Elizabeth Place’s, The Levin Family Foundation’s Celebrate Life and Health at Sinclair College, and, Dayton Veterans Administration Medical Center.

To this day, Hank continues to obtain support from the Oral Cancer Foundation, Head And Neck Cancer Alliance, LIVESTRONG and SPOHNC for materials. He also obtains supplies from local businesses and organized doctors and dentists to perform screenings.

Prior to 2007 and Hank’s commitment, residents of Dayton had nowhere to turn for information, personal support, and FREE screenings for oral, head and neck cancers, especially in the economically disadvantaged areas. To date, there has been a surplus of 1000th FREE screening completed. One quarter of those people required referrals for additional follow-up and others, for actual treatment. Despite their lack of insurance, every person referred for further investigation is provided the sources and resources to get the follow-up and testing they require! Oral, head and neck cancers are the sixth most frequently diagnosed cancer in the country and the need is great, especially with the rise of HPV 16 and 18. Hank has now included Greenville and Springfield Ohio in his efforts.

Hank is passionate in supporting all cancer patients and for the past eight years has sponsored an American Cancer Society Relay for Life team and served as a local committee chair for five years. He has made opening remarks and speeches at numerous Relay for Life events and Survivor luncheons.

In Sept. 2012, Hank was honored as the Miami Valley Hospital Foundation “Champions of Hope” and “Person of Inspiration Award” which recognizes four individuals each year — caregiver, survivor and medical professional and inspiration. Hank was nominated in both the Survivor and Inspiration categories by HNCA.

Hank continues to volunteer with Imerman Angels, Scott Hamilton Fourth Angel and SPOHNC’s NSV program to counsel survivors of oral and head & neck cancers across the country by phone and email. He is an inspiration and now a great source of strength to his 38-year-old niece, currently completing treatment and multiple surgeries for nasopharyngeal cancer.

A man of great faith, he does not wish for himself but works for others’ benefit. A devoted husband of 45 years, he is a proud father of three, a grandfather of eight, and great granddad to four.

Where does the foundation for his strength and determination come from and his ability to take control? At the tender age of 8, Hank suffered from polio. A doctor, standing next to Hank’s hospital bed, informed his parents that he would never be able to walk again without the aid of braces and crutches. Sixty-one years later, this very formidable Hank still runs 5K races and hikes, without any aids.

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Even with all of my daily reminders of what this disease has done to me, the permanent reminders, the scars that anyone can see. I remind myself, even on the bad dark days that I fought this horrible disease and I will always fight for the rest of my days.Angie Rush
Survivor of Stage IV Tongue Cancer

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