Peter Hilaris

No matter how much support you have, at times it will be lonely. Concentrate on living with positivity, having faith and the rest will fall into place. 

My journey began in 2016. My family and I were visiting our daughter studying abroad in Ireland, when I developed a horrible cough.

It got so bad that by the end of the trip, my voice was completely hoarse. At first, I thought I was sick from traveling; but when my cough still hadn’t subsided after getting back to the United States, I knew I had to visit an ENT to get checked out. After numerous tests, I got a call from my doctor asking me to come into the office to discuss the results. 

He told me I had HPV carcinoma of the larynx. Hearing him say cancer left me speechless. It was utterly numbing. My wife and I immediately decided that we didn’t want to hide my diagnosis from our children. We thought it was best to “rip the Band-Aid” and tell them what was going on. Although it was extremely emotional, I wanted to make sure we went on this journey together.

I started biking again this April with my tracheostomy tube capped

That August I underwent primary chemoradiation therapy. Initially, I was able to avoid a PEG tube by working tirelessly with a speech and swallow therapist to maintain my nutrition by mouth. After finishing my treatments, I was recovering and imaging was showing the cancer was resolving well. Everything seemed to be going in the right direction until I came home from a bike ride one day in June of 2017 and could barely breathe. I immediately went to the emergency room where they placed a tracheostomy tube because my airway had shrunk to the size of a cocktail straw. I had so much edema in my throat that it became almost impossible to swallow. So, because my weight dropped significantly, a week after the tracheostomy tube was placed my doctor decided I needed a PEG tube as well. Imaging showed the cancer was still gone, but radiation therapy had damaged my cricoid cartilage. I was able to get rid of the PEG tube in 4 months but had to keep the tracheostomy tube in for about seven months until the swelling had calmed down enough for me to breathe normally. I thought I was in the clear.

The more support you have behind you, the more you can concentrate on the ultimate goal of ridding the disease

Then, in November of 2018, I was spinning in a class and started having difficulty breathing again. Imaging still showed no sign of the cancer returning but did show my thyroid cartilage, a different area, had broken down due to the radiation. This was terrible news because they were forced to put the tracheostomy tube back in, although I avoided the PEG tube this time. I am still waiting for my airway to improve enough to get it removed. On a positive note, I did improve enough that I started biking again in April of 2019 with my tracheostomy tube capped, meaning breathing through my airway only. 

Live with positivity and the rest will fall into place

From the beginning of this journey in 2016, I continued to work the whole time while I was undergoing chemoradiation treatments. I would go down to the hospital each evening after work to get chemoradiation. After getting each Trach in I tried to get back to work as soon as possible. While this was exhausting, I wanted to maintain my regular routine as much as possible. It was important to push myself. I didn’t want the disease to dictate the way I lived. I was lucky to have such a knowledgeable support team behind me; my dad is a radiation oncologist and my wife is a dietician. Their expertise made me confident I was always headed in the right direction. In addition to the support of my family, my congregation was incredibly supportive. Besides the prayers and holy oils they sent me, they went as far as creating a schedule where they would cook meals and deliver them to my house. It’s often hard to accept help, but I realized that everyone has their time in life to receive. This was my time. The more support you have behind you, the more you can concentrate on the ultimate goal of ridding the disease. That being said, at the end of the day it’s your own battle. No matter how much support you have, at times it will be lonely. Concentrate on living with positivity, having faith and the rest will fall into place.