My parents were diagnosed with Alzheimer’s in February, 2006 and as their sole caregiver for almost two years the physical and mental toll it placed on me at times was almost unbearable. I feel I was really just beginning to grieve the loss of my parents when my husband was diagnosed with Adenoid Cystic Carcinoma in March, 2009.

Adenoid cystic carcinoma (ACC) is a rare cancer, typically originating in the head and neck region. This malignancy has a slow – and sometimes relentless – progression with a tendency to grow along nerves. Particularly high rates of recurrence and metastasis to the lungs, liver and bone lead to a poor prognosis beyond ten years. Upon diagnosis of ACC, if there has been any nerve invasion then the prognosis is less than 5 years. In my husband’s case there was nerve invasion.

Afflicting about 5,000 Americans, ACC is diagnosed in about 1,200 new cases each year in the United States. ACC is an equal-opportunity disease that might strike anyone. It is not inherited and is not associated with smoking, drinking, infection or ethnicity. Women comprise nearly two-thirds of ACC cases. ACC often afflicts young and middle-aged patients. The median age at diagnosis for ACC patients is a decade younger than for all cancer patients. No chemotherapies or targeted drugs have been approved for ACC. Research is still needed to find effective therapies for ACC patients.

I often ask myself this question. What has been mentally harder for me – The fear of the unknown? Or, grieving the loss of a loved one? In my opinion grieving after the loss of a loved one is very difficult, yet the fear of the unknown is equally as difficult, particularly given my circumstances. I’m still grieving the loss of my parents, and now I face the fear of the unknown in dealing with my husband’s condition.

Journaling helps keep me sane. My family and friends comfort me. Open to Hope keeps me focused, by knowing I’m not alone. I often come here and read the many stories of tragedy. I’m also doing my best to read the stories of hope! Although, the future is uncertain regarding my husband’s condition I try my best everyday to hold on to hope and look down our road of togetherness and see the sun shining and see the silver lining of the clouds.

Deborah Ann Tornillo
Author “36 Days Apart”
http://www.authorsden.com/dtornillo

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Deborah Tornillo

Deborah Tornillo was born and raised in Corpus Christi, Texas by her loving and nurturing parents. She attended the University of San Miguel de Allende, Mexico, where she studied Art. After marrying, raising two daughters and enjoying life with her family, Deborah joined a higher calling by committing to be the primary caregiver for her parents, both of whom were diagnosed with Alzheimer’s in February 2006. In her new collection of memoirs, 36 Days Apart: A memoir of a daughter, her parents and the Beast named – Alzheimer’s: A story of Life, Love and Death, Deborah chronicles the time spent taking care of her mother and father. 36 Days Apart recounts this painful, enlightening journey, and Tornillo writes candidly about the struggles and fears she faced as her parents’ caregiver. As their disease progressed, Tornillo was faced with the difficult task of learning how to be a parent to her own parents. Through the year and a half of caring for them she extensively researched Alzheimer’s in order to provide the best care possible, all the while knowing that the disease would eventually win in the end. 36 Days Apart gives an honest, unflinching look at the realities of caring for and losing loved ones to Alzheimer’s. Tornillo gives the reader an inside look into the day-to-day life she faced during her heartbreaking, difficult time.

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