In November 2014, I visited an ENT doctor for a persistent sinus drip and sore throat. The doctor didn’t find anything out of the ordinary and sent me home with a prescription. I visited his office again in May 2015. Still nothing out of the ordinary. However, as the summer progressed, so did my symptoms. I went out to lunch at a steakhouse and was forced to cut the steak into quarter-inch pieces just to swallow. It got so bad I could only eat soup comfortably for lunch. Afternoon conference calls would leave my voice completely hoarse. I decided to go back to the ENT specialist in September after getting our son settled in at college and seeing our daughter off to study abroad.
At my appointment, the doctor’s exact words were, “How did I miss that?” He recommended an ENT specialist and told me to ask for an immediate appointment. That was the beginning of a month and a half of office visits, which included pre-testing and a biopsy. Then at the beginning of November, I found out I had HPV P-16 tongue cancer. He explained the treatment was brutal, but the chance of recovery was high. I can’t thank the staff enough for helping me get through my treatment. Thank God there are such wonderful people in this field.
One of the hardest parts was informing my parents of my diagnosis. As we lived halfway across the country, my brother went to their house to be there as I told them the news over the phone. Next, we then had to decide if we should tell our children while they were away at school. They both only had a month left and would be starting finals soon. In the end, we decided to wait until winter break to prevent any issues with their tests. After all, there was nothing they could do while one was away at the University of Kansas and the other abroad in Italy. We told them when they arrived home. Although some people may question our decision to wait to tell them, it was the right choice for us.
At the beginning of my 33 sessions of combined chemotherapy and radiation, I thought this would be fairly easy. What’s the big deal about 33 sessions? I got up, took a shower, did my hair and makeup, and then on to my treatment. Toward the end of January, I would get up, brush my teeth and hair, and was lucky if I didn’t cry. By then, I was having an issue maintaining my positive thinking. I entered into a time in my cancer journey I call my “Deep Abyss.” I simply didn’t care about much and lived in a foggy world. I was still working, but at a minimum. Even Christmas was a blur. Luckily, I had bought everything earlier that year. I dreaded sneezing due to the pain. I lived mostly on Boost, water, and yogurt. In the beginning, I had chosen the chocolate-flavored Boost, but by the end, even that was taken from me as I lost most of my taste buds from radiation. I kept telling myself that this was not a death sentence, I would recover, but sometimes that made it worse. I would then feel bad for feeling down, especially since I had a friend going through recurrent breast cancer treatment.
It was at this time that family and friends were there to hold me up. My husband, Jim was commuting to New York City every day and dealing with me in the morning and night. My daughter kept a daily log for me, researching nutrition and pain relief. She discovered frozen pieces of papaya felt the best for my burnt throat. My son, Alex was there to help out with all the other tasks. Even our pets were there for me. Our dog, Sam stayed by my side, and our cat, Cleo slept on my lap. My husband’s family & friends came to drop off food, take me to treatments, and to visit even when I often drifted off to sleep in the middle of it. Friends made airport runs to pick up my mom and sister who both came out to help me during this time. My brothers and sister-in-law watched over my dad at home while mom made the trips to stay with me. The amount of support was overwhelming especially considering many patients have to do this alone. I am astonished at their strength of will.
After treatment ended, the pain got worse. I kept saying “by summer this will be over,” but it was impossible to get out of bed every morning. The nights were just as bad as I woke up every 2 to 3 hours, choking on mucus. Slowly my throat began to heal, and I started treatment for lymphedema in my neck. The week before Easter, my mom and I went shopping for clothes as I had to start going into New York City for work. This is where I received a little bonus for everything I went through: I lost over 45 lbs and was down several sizes from treatment. My doctors may disagree with me, but I was thrilled! I forced myself to go to Kansas to see Alex play lacrosse for their club team. I refused to let this disease stop me from living life to the fullest. When I headed back to work, my team helped me any way they could. They would walk with me to the ferry carrying my bag and even get me lunch. They were such terrific support.
In retrospect, there are good and bad moments throughout the journey. Some of the bad has faded away and some of it comes back when a song plays, or something is said. This happens for all four of us. Unfortunately, it wasn’t just me who suffered the consequences of my disease. But as a whole, my family and I are on the other side with clear test results. There is no more “in a week this will be over.” I don’t have saliva glands anymore, but there is spray for that. At the end of the day, I survived with minimal effects and thankfully it was me, not my kids who got sick. That is my silver lining. Others have suffered more, so I am grateful for my new normal. I also got to see the best of people; they gave up their time for my family and me. There is something warming about that.