At age 52 I was diagnosed by Duke Surgical Oncologist Ramon Esclamdo MD with advanced stage human papilloma virus (HPV) and associated squamous cell carcinoma of the oropharynx.
My story begins. My first sign of getting sick was at work. I was parking a car. While walking back to the dealership I started walking side ways to my left – which is the side of my cancer. I shook it off and talked myself out of being worried. I began to have a sore throat and had been coughing up blood at the same time. One day in the bathroom at work I said to myself “Will I ever feel better again?”. That kept on for a while then my left ear started to go deaf when I would go to bed, I could feel a mass going over my eardrum, then it went blank. After that I was pretty much deaf in my left ear. I knew it was time to go the doctor. I went to the local urgent care. The doctor claimed he looked down my throat and ears and saw nothing and said it was allergies and I needed to get the allergy spray. I did, and nothing happened. By then I could feel something hard on the left side of my tongue. Luckily, I had made an appointment with my primary doctor for a complete physical. When I went for my follow up I was told that I am “One healthy man and will live for a long time” no problems at all. And I was told I had bad allergies. A few weeks passed, and I was feeling worse, so I asked my wife to shine a flashlight down my throat. I knew it was bad. She about passed out and said this is not good not good at all. My tonsil was hanging inward in my throat with open sores. We googled throat and mouth cancer that night and I was scared and knew I was going to die. I called the local ENT and made an appointment. Thank God I have BCBS Insurance, so he took me in. I was asked if I had a doctor that could refer me to them and I told him my doctors had no clue what they are doing. He looked down my throat and ordered biopsy ASAP. The ENT doctor told me I had cancer, but it was good “Good cancer” a few radiations and chemo’s here and there and I will be fine. Not a worry.
We wanted a second opinion and made an appointment at the Duke Cancer Institute. After a further test I met with my doctor and was told it was advanced stage HPV associated squamous cell carcinoma of the oropharynx. This is not “Good cancer.” This is bad, really bad cancer. Thinking every local doctor, I met with had no clue at all. They let me down. If I would have listened to them I would have been dead a few years now. I did call a lawyer to ask if I had a case and was told if I would have died I there could be a case. More tests were performed; I met with my oncologist to come up with a plan to treat my cancer. I had two choices – either surgery or radiation with chemotherapy. We decided on 7 weeks of intensive radiotherapy and (35 treatments) concurrent chemotherapy (10 treatments) administered on the first and fifth week. It started off well the first week, with no symptoms. The second week I started feeling “it.” I began to lose my appetite and my throat was beginning to hurt. By the third week, the radiation began to take its toll. The vomiting felt like hot bile raking over open sores. That went on four more weeks with the next round of chemotherapy fifth week. During that time I was admitted to the hospital for many issues, such as failure to thrive, malnutrition, constipation, abdominal pain, orthostatic hypotension, neutropenia, mucositis, and gerd which were all side effects of the radiation. Near the end of my treatments I either walked or was rolled off in a wheelchair to get IV’s or admitted to the hospital. I was at the point I was asked a few times if I wanted to talk to a preacher and I did. Not being sure what God thought of me, from what I know now God thinks a lot about me.
Recovery was not easy. I lost 50 pounds. My weight was down to a mere 137 pounds. The first month at home I had bad panic attacks, would not eat and had open sores on my tongue from the cancer that were getting worse. It was bad. I went back to meet with my doctor at Duke and he told me to get over the panic attacks, which I did. Then he said “Robert I did my job. The cancer is gone. If you want to die, die. You need to eat.” Tough-Love!! He warned me that if I didn’t hurry up and eat and gain weight, he would put a feeding tube down my nose. A few weeks later, I had a feeding tube. It was terrible, and I hated it. I had to spend every day feeding chocolate drinks into the tube, which fed through my nose and into my stomach. Until I threw it up one afternoon and had to go to the local doctor to cut it out.
I ended up going to work in December which was way too early. I was taking 6 oxycodone a day -two for breakfast, two for lunch and two for dinner, while numbing my mouth to attempt to eat. I remembered crying on the way back to work during lunch because my mouth hurt so bad. I am completely off the oxycodone- went from 6 to 4 to 3 to 1. The last one was the toughest. During that time the sore on my tongue had gotten infected, I was not eating at all and was losing more weight. My doctor at Duke sent me back to Durham for Hyperbaric Chamber Treatments to cure my tongue. So it began again, 70 dives twice a day for 35 days, two hours per dive at a pressure equivalent of being under 33 feet of sea water. I had to put a plastic bubble on my head during the dive and sit with other people with plastic bubbles on their head. People with no legs, no arms etc. about anything you can think came into the Hyperbaric Chamber. I remember one day I went in there and I could hear a vacuum running. I looked in the main chamber and there was a patient getting his lungs vacuumed. I will never get that picture out of my mind. The treatments did work, and I have been getting better daily.
I am cancer free, gained my weight back, gone back to work, and attend Church regularly. I will have dry mouth, chemo brain, tinnitus, and a few other long-term issues to deal with. I would not have made it without God, Duke Cancer Institute, The Caring House, Family and Friends.