I created SupermanHPV.com for one main purpose, to help those diagnosed with HPV related oral cancer maintain a positive attitude and become mentally strong while battling this cancer. When I realized that I was going to beat my stage IV HPV related oral cancer diagnosis, I decided that one day I would help others by sharing my story and experience. Back in May 2014, I had never even heard of HPV related oral cancer, nor had anyone I known ever been diagnosed. Outside of speaking with my ENT, I spent countless hours on the internet searching for information. I was anxious about what I was about to endure, and while I realized that everyone’s experience is different, I longed for some understanding of what might become my reality. My hope is that SupermanHPV.com will comfort those diagnosed with HPV related oral cancer, and give them the strength to fight throughout their journey.
I was fortunate to have many people that provided me with strength and support to handle each day. I was also thankful that I was not alone. As I’ve mentioned before, I had radiation five days a week for seven weeks, as well as chemo for eight hours every Thursday after radiation. Before my treatments began, I also had a radical tonsillectomy and neck dissection, where forty two lymph nodes were removed from my neck, as well as a feeding tube (g tube) placed. The feeding tube became necessary, as a result of the side effects from radiation which were third degree burns inside my throat. Life was tough and unpleasant, yet I worked diligently to remain upbeat and positive for the people around me, as well as for myself. I had family and friends drive me to each radiation appointment, as well as sit with me during chemo. While going through my treatments I spoke with many people who were alone, often being forced to take public transportation to and from treatments, without any support.
My support group consisted of my wife, kids, parents, siblings, close family and friends, ENT, oncologist, radiation oncologist and a client’s daughter.
My parents, siblings and their families also visited on a daily and weekly basis keeping a close eye on me, and making certain I was in a good frame of mine. As we have a family business, I spoke with my brother, father and sister on a daily basis regarding what was happening at our company. My brother who is also my best friend and next door neighbor would also come over daily to see how I was enduring the craziness of chemo and radiation.
My ENT, oncologist and radiation oncologist who are all very well respected in Central Florida, also gave me confidence that I would beat cancer. As well, I am someone who asks many questions, and they never made me feel as though I was a burden, nor did I ever feel rushed when meeting with them. My oncologist and radiation oncologist also gave me their cell numbers, and I texted them multiple times weekly, and often daily with my concerns, and they would always text me back. This is something I will do for the others, as a way to pay it forward. I will forever be grateful to these doctors and their staffs. These incredible doctors have excellent bedside manners.
One of my client’s daughters out of Jackson, Mississippi, who had received radiation to her throat years earlier also texted me back whenever I reached out, assuring me that the harsh side effects that I was experiencing were all temporary. I will never forget the day when I asked her how much longer these side effects would go on, and she stated approximately two more weeks. Her words gave me strength to go another day, day after day, as I knew she had actually lived this.
This was significant to me as there was a four week period which began towards the end of my radiation treatments where I was gagging and choking 20+ times daily which lasted approximately three weeks post treatment, as the side effects from radiation were cumulative. I had third degree burns in my throat and I could not swallow my saliva or any liquid. During that same time frame, I would check my blood pressure every few hours each day to confirm that I was not becoming dehydrated. If my blood pressure was increasing, I knew that I needed to take in more fluid through my feeding tube in my stomach. I would use a large syringe, and consume approximately seven Ensures and two Gatorades a day through that tube. I would become dehydrated within a few hours of going to sleep nightly, as my body would suck the fluid from the inside out. I was not sweating, having diarrhea or throwing up, yet I would go to bed fully hydrated and wake up within a few hours fully dehydrated. My saliva became so thick after five weeks of radiation that it would cover my air way when I fell asleep, and I would wake up almost every hour choking, not able to breathe. A month of so post treatment, these side effect become much less severe, and today I rarely think about them.
I also had a close friend drive me to many radiation appointments and then walk me over to chemo on a weekly basis. After treatment, he would bring me home and stay for a while, making certain that I was ok. He is the person who got me addicted to the show The Last Ship.