Written by Lisa Ingrassia, daughter of a head-and-neck cancer fighter and author of “A Daughter’s Thoughts – Happy Father’s Day, Dad,” published by the NFOSD in 2013
December 23rd. It’s the most wonderful time of the year. Every time we turn around there’s all sorts of delicious goodness surrounding us. You just cannot escape it.
But for our family, it’s a constant reminder of what has been taken away from us. My father, Al Ingrassia, is a Stage 4 throat cancer survivor. He’s my hero, my best friend, everything a daughter could ever want in a father. He beat tongue cancer and 3 years AFTER his treatments he lost the ability to eat or drink orally. He lives on a PEG tube. He’s constantly choking on thick phlegm, always spitting in his red Solo cup. I now hate red solo cups. They have become the symbol of my father’s struggle and no longer represent what they mean to so many other others.
It’s my experience and opinion that there is a major lack of information within the medical community in regards to those who survive on PEG tubes. Try going to the ER with someone living on a PEG tube. Just to get formula to the patient can take hours, and don’t get me started on how many times they come into the room with a tray of food, looking stunned when you continue to remind them that the patient cannot have ANYTHING orally. The general population just doesn’t get it. For patients and families living with this reality, it’s frustrating. I have lost track of how many people have said, “You mean he can’t even have WATER?” and the swallowing jokes are insensitive and hurtful. My father has thick, glue-like phlegm that is blocking his airways, phlegm that doctors say he runs the risk of suffocating on, the phlegm that is a direct result of his radiation treatments. This is the horrifying reality that my family lives with. So please, try to understand when I roll my eyes at your jokes or your stupid trendy diet.
My father has suffered with aspiration pneumonia (from his phlegm) 3 times in the past three years. His last bout of aspiration pneumonia was January 2015. After 2 long weeks in the hospital, lots of tears and tons of pleading with God, and spending another few weeks in rehab, he returned home to us.
My mother is his caregiver and the angel in our family. I do not know if my father would still be alive if it were not for her. During his last bout of pneumonia, I remember picking my father up in his hospital bed and helping suction the spit out of his mouth. When my father was healthy, he was well over 6 feet tall and a hearty 250+ pounds. He was the Italian father the kids were afraid of; he was my hero, my real life guardian angel (he still is!). Picking up your father and suctioning thick, gunky spit to prevent him from choking is not something you can prepare yourself for. My father was diagnosed at the young age of 60, and has spent the last 7 years on a mission to get well. I am beyond thankful that my Dad is here with me and I can still hug him. He is the definition of a fighter, a hero, a parent that will do anything for their family.
I am his oldest daughter, Lisa. I am a member of the National Swallowing Foundation and am so grateful for this wonderful foundation. I have learned we are not the only family going through this. We are not the only family who dreads the holidays or special events. I have learned that it’s ok to be frustrated and to ask questions. This has been a journey and The National Foundation of Swallowing Disorders has given me comfort and sanity during extremely difficult times. The member stories always seem to appear at just the right time, please keep them coming in 2016. Thank you everyone for your dedication and passion.
Lisa and her family are looking for answers to coping questions. Lisa posted a question on the NFOSD at: http://bit.ly/1SwVNQ7
If you have any suggestions, please post a comment that might help Lisa and her family.