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Maria Filosa had never even heard of tongue cancer until she received her diagnosis in 2007.
From that moment on, she vowed to survive, but little did she know the enormity of many daunting challenges ahead.
Her care at Princess Margaret Cancer Centre included 35 radiation treatments, two rounds of chemotherapy, and surgery to remove 70 per cent of her tongue.
The surgical team used thigh tissue to make a flap to attach to Maria's remaining tongue to fill the space in her mouth. But the reconstructed flap lacks sensation and doesn't move, so lingering side effects include permanently impaired speech and difficulty swallowing. As well, radiation damaged Maria's saliva glands and she copes with constant dry mouth.
Eleven years later, Maria is cancer free but she can never forget the tremendous physical, emotional, financial and social toll of her cancer journey – one she describes as devastating with life-changing impact on her husband and family, too.
"I felt so isolated and my normal life was suddenly not normal. But I didn't accept that this would be 'it' and I really pushed the envelope," says Maria. "Now I have adjusted and live a new normal."
Her new normal includes slowly sipping water all day long to compensate for no saliva, carefully eating to prevent choking or aspiration of food, and taking special care of her teeth, which are affected by dry mouth.
Social situations were the most difficult because of eating challenges and difficulty speaking.
"I'm Italian and everything social revolves around family, friends and food. It was so discouraging and isolating not to participate as usual.
"I like to cook and this helped me expand my food choices by modifying recipes which made food easier to swallow. I eat almost everything except some meat like steak, which is too difficult to chew."
During her acute phase of recovery, Maria worked doggedly with Andrea Gomes, a speech language pathologist at the cancer centre.
"Maria was incredibly motivated and persevering," says Andrea. "The goal was to improve her speech and swallowing functions, and Maria aced it.
"She did her oral motor and swallowing exercises regularly and diligently practised all the techniques to help improve the clarity of her speech."
Andrea says the challenge after surgery to regain safe and efficient swallowing function is immense given the 30 different muscles and six cranial nerves involved in swallowing.
"Not only has Maria advocated and worked hard for herself, she has continued to be a teacher, support and inspiration for many other head and neck cancer survivors."
Early on, Maria decided an important part of her own recovery would be to help other survivors.
She spent six years as a
Healing Beyond the Body volunteer in the clinic where she was cared for by an integrated team she says she can never thank enough. She also collaborated with the team to develop a program called Getting Back on Track: Life After Head and Neck Cancer.
Living the best life possible
Maria, a former implementation/project manager in the financial sector, now focuses on caring for her elderly mother. She also looks after a pre-school niece and nephew one day a week, which is a source of great joy.
"We play and have fun. To them I'm just 'Auntie'. No cancer. No side effects. No speech impairment. Just Auntie!"
In Canada, every year 4,300 people are diagnosed with head and neck cancer, according to the Canadian Society of Otolaryngology. At the Princess Margaret, more than 800 new patients with this disease are treated each year.
April is Head and Neck Cancer Awareness Month. This week, Maria will share her inspiring story with patients, caregivers and staff attending "Reclaiming Your Life" – the 3rd annual Head and Neck Cancer Survivorship Symposium
"My main message is always the same: Cancer and its aftermath is only one part of my life and not my whole life. I have adapted to live my best life possible," says Maria.
The event, co-hosted by the Princess Margaret and Mount Sinai clinical teams, is on Thursday, April 26 from 5:00 pm to 8:00 pm in the 18th floor auditorium at Mount Sinai Hospital, 600 University Ave.
To register, call 416 581 8620. Patients, friends, family and staff interested in learning more about head and neck cancer are all welcome.