Watching a parent battle cancer is hell on earth torture.
For seven years I watched my hero, my best friend, my father bravely battle cancer. Stage IV base of the tongue cancer. His treatment options were limited to horrific, disfiguring surgery or very aggressive chemotherapy and radiation. Our family opted for option B, chemotherapy and radiation.
Little did we know.
After three long, difficult months of aggressive radiation and chemotherapy my father came home frail with a peg tube inserted in his belly for nutrition. I remember the first time I saw the tube sticking out of his stomach, I almost fainted. He was patiently showing me how it worked and I nearly fainted, right on top of him and the tube. I felt sick. I quickly excused myself and ran to the bathroom and sobbed. I returned to the living room to find my father vomiting from his recent chemotherapy.
And then I felt selfish.
A grown woman crying because she can’t handle reality while my father, the patient was suffering. I felt awful. Gently I rubbed my father’s neck and then cried for my mother to help us. Once again I felt selfish as I stood there with my feet cemented into the ground watching my larger than life father wither away from cancer as my mother cared for him with dignity, love and eloquence.
And this was only the beginning.
My dad had to learn how to eat all over again and began the tedious task of swallowing therapy. His first assignment, to eat a vanilla yogurt. How difficult could that be? A tiny little Yoplait yogurt. It took him over two hours just to make a dent in it. After each spoon he followed with exercises his therapist taught him.
Slowly, each day progress was made.
A few months post treatment and my dad was able to consume an entire yogurt orally under 2 hours. A few months after that and his peg tube was removed and he was eating orally. Success!!! Well kinda because eating was never the same for my father again. He was never able to eat a steak, and the traditional Italian Sunday pasta dinners were a thing of the past. Pasta was too difficult to consume it would stick to his throat causing choking. So many foods he once enjoyed were a faded memory. Regardless of what he was eating every single bite required him to sip water to ensure it was swallowed properly. As time passed, more and more foods became difficult to swallow until he was handed a life sentence of surviving on a peg tube. My father spent the last four years of his life without a morsel of food or an ounce of liquid consumed orally. And with that came constant remarks from well meaning friends like, “Even just tiny bite?” or “I read online if he trys this new recipe he will be able to eat again.” Because when someone is sick everyone is a doctor thanks to Google.
It was absolute torture to watch my larger than life father wither away before my eyes.
The real doctors informed us the aggressive radiation treatments that saved his life destroyed his epiglottis making eating impossible. All of his food and liquids were entering his lungs causing aspiration pneumonia. And to make that diagnosis even more depressing my dad had extensive nerve damage. For the remaining four years of his life I watched my father scream in horrific pain, tremble, shake and cry for Jesus to help him.
You have not felt a broken heart until you have heard your larger than life heroic father scream in pain.
Watching a parent die is excruciating, watching a parent die who is also your best friend is hell on earth. For four years we searched for someone to help my father. Someone with a miracle, someone to give him some sort of quality of life. I spoke to my father several times a day, visited at least once a week. With each visit I witnessed him slowly dying. As my dad’s sickness stole pieces of him, pieces of me were dying as well.
Watching a parent die makes you angry, angry that your larger than life super hero was given a death sentence and that you were handed front row seats to helplessly watch. Other friends are out with their parents enjoying fancy dinners and I am watching my father survive on medically prescribed shakes, Gatorade and water. So now you can understand why I roll my eyes at anyone selling fad shake diets on Facebook. I can’t justify denying yourself certain foods when there are patients like my dad yearning for just one bite of food, just one sip of water all because cancer treatments stole your ability to eat. See, when you’re battling a disease there is no time for fancy fad diets, you’re fighting to survive and spend just one more day with your family.
Watching a parent die also makes you realize how sacred life is.
I was given a gift, the opportunity to sit with my dad hold the strong hand that held mine my entire life. My protector, my hero, my first love. My best friend in the whole wide world.
Nothing was left unsaid. My father died knowing how much I loved him and vice versa. I am my father’s living, breathing legacy and I will spend the rest of my life telling others what a great man he was and the very brave battle he fought. My father lost his battle due to his disease and complications with dysphagia. Head and neck cancer, and its aggressive treatment commonly results in difficulty swallowing, which stole my father’s quality of life and eventually stole him from a loving, kind family who wanted to badly to grow old with him.
I will continue to strive to be an advocate for those impacted by swallowing disorders, trying to provide hope and improve their quality of life. I will use my anger and create a positive impact for others, starting with my Paint It Forward event, an evening of painting and a celebration of my father’s legacy. A portion of the proceeds from this event will be donated to the National Foundation of Swallowing Disorders through the Albert J. Ingrassia Educational Fund. A fund I established to help advance the treatment of swallowing disorders.
Watching a parent die is a horrific, gut wrenching pain, but I can assure you my friend, there is nothing like death that ignites change.
“You either get bitter or you get bitter. It’s that simple. You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you.” Josh Shipp