I was diagnosed with squamous cell carcinoma (cancerous lesion on my tongue) in March of 2008. I was 44 with a wife and 10 year old son and daughter; it was devastating. Just hearing the words, “you’ve got cancer” made me sick. I had never used tobacco and wasn't a heavy drinker, so how could I have tongue cancer? Mary and I were in shock then reality began to set in. We made the trek from doctor to doctor trying to figure out the best course of treatment. After weeks of doctors visits and numerous tests and scans we settled on chemo and radiation.
I started radiation on April 16th and my first round of chemo was on April 21st, Alex and Elizabeth’s 11th birthday. Radiation was 5 days a week for a total of 35 treatments. I was on the table for about 20 minutes each time, but there were days it seemed like an hour. There were times when I didn’t think I would make it the full 20 minutes. While I laid there on the table I said Hail Mary’s and Our Father’s and host of other prayers and by the grace of God I made it each day. By the end of the first week of chemo my mouth was so blistered that I could barely eat or drink water. In the first two weeks I lost 14 lbs and by Thursday of week #2 I had a feeding tube inserted into my stomach. Finally, I could get some nourishment and water, even my medication was easier to take now. There was one point during my treatment where it became difficult to talk so the kids and Mary bought me a white board so I could communicate. I continued with weekly chemo treatments and daily radiation for a total of 8 weeks and on June 13th I had my last radiation treatment. I had lost a total of 40 lbs during the ordeal. I had my feeding tube removed towards the end of July and I was finally able to eat solid food again….I couldn’t taste it, but at least I could eat! For the remainder of the year each week brought new healing, I could eat more and taste more and it felt like there was a light at the end of the tunnel.
However, January 2009 I had an enlarged salivary gland, the doctor’s thought it was blocked or damaged from radiation and did a CT and it came back looking like a non cancerous mass. They gave me the option to have it taken out or left in. On March 10th I had surgery to remove the gland. The following week I got the news that there were cancer cells in the gland that had not previously shown up on the scans. The surgical site never healed and after going back to the surgeon twice, my oncologist and an inconclusive MRI I finally sought a second opinion in May. The new doc ordered a PET to see what we were dealing with. The results were shocking. The cancer from the salivary gland had now invaded my jaw and the floor of my mouth. I would need to have my right jaw replaced with my left fibula and the floor of my mouth rebuilt using skin, muscle and an artery from my left calf. After a 12 hour surgery and 8 day stay in the hospital I was finally released. I had a fistula near the back of my mouth that wouldn’t heal and would drain out my neck, so we had to leave the neck wound open and pack it. The packing had to be changed several times a day, but that meant I couldn’t take food or water via my mouth. After about a week of having a feeding tube in my nose, I went in and had another PEG tube placed. I would keep the PEG until late September. In September I had a small tumor removed from under the right side of my tongue. It was a very routine surgery or at least as routine as any other head and neck surgery. While they were in there they also took a wedge out of my lip to tighten my lip up. During the big surgery in June the docs’ hit a nerve and I was unable to move my right arm above my head so I had physical therapy twice a week for 4 months. It’s amazing what we take for granted when we are healthy! In January, I felt a bump inside my mouth and a PET scan reveled no tumor in my mouth, but a small mass of suspicious cells in a lymph node above my right collarbone. In February 2010 I had the cancerous lymph node removed from my right shoulder and have been clear ever since! It was a hell of a couple of years! I am grateful for all the love and support I have received. It is truly humbling!