Steve was diagnosed with oral cancer in April 2016. It was the same week his daughter graduated from college, so he kept the diagnosis quiet until after her graduation so it wouldn’t spoil her celebration.
Steve’s cancer symptoms didn’t just appear suddenly. Although he didn’t have any bad habits that usually lead to oral cancer (no tobacco or alcohol use) he did have an unusual auto-immune condition, lichen planus. He was diagnosed with it a year before the oral cancer diagnosis.
Lichen planus looks like cauliflower on the surface of the tongue and other oral tissues, but it forms lesions and clumps that can become cancerous, explained Steve. After several biopsies on benign growths, one was finally cancerous. The growth was on the left side of my tongue where it meets the inside of my cheek.
His first surgery was in May of 2016 at the Huntsman Cancer Center in Salt Lake City, Utah. After four additional surgeries, Steve views his initial surgery as the most challenging and hardest. There were some complications from post-surgical care that led him to the ER and a follow-up surgery a few days later.
After the second surgery, Steve dealt with excruciating and unrelenting pain in the surgical areas in his mouth. Swallowing anything, even water, felt like sliding razor blades down his throat. After several weeks, he could swallow water, then thin broth, and eventually pudding and applesauce.
Approximately a year later, Steve had his first relapse and faced another surgery. After that, he enjoyed about 18 months of healing, only to be faced with a third surgery.
His most involved surgery occurred in May 2021. For most of the early part of the year, he began noticing growths appear on his tongue. The lichen planus was producing bumpy white tissue, then more lumpy growths. Steve would send his oncologist images and would receive responses back that it was nothing to worry about. Sometimes the lichen planus would disappear, but eventually it turned into red, angry-looking tissue (dysplasia), and then turned cancerous.
This surgery was far more radical than the others with the cancer spreading to the floor of Steve’s mouth, which had to be removed along with the left half of his tongue. This surgery (called a hemi-glossectomy) involved replacing the left half of his tongue and the tissue on the floor of his mouth with tissue from his left forearm, making a flap. Skin from Steve’s left thigh was removed and grafted onto his left forearm, and an artery from his left forearm was removed and surgically inserted into his neck to provide blood supply to the newly constructed tongue flap.
Steve was in surgery for approximately eight hours with two surgeons working simultaneously – one to remove the cancerous tissue and the other to do the reconstruction. After the surgery, he was in ICU for four nights. He was awakened every hour for the first two nights by his medical team to examine the tongue flap and check the blood supply. In order to protect the flap from bacterial infection, Steve was unable to breathe well nor drink anything for the first five or six days after the surgery. He had a breathing tube, feeding tubes, IVs, a catheter, an arm brace, gauze pads on his thigh, and electrodes and wires everywhere. The only way Steve could communicate was by writing with his right hand on a small whiteboard.
Eventually, he started learning to eat again. It was not easy, and I wasn’t sure I would be able to taste food after the surgery. But I still remember the first thing I could eat and taste. It was potato soup from the hospital cafeteria, explained Steve. I was so grateful and amazed that I could taste soup that I cried like a baby. My sense of taste has not completely returned, but I can taste food well enough to get by and be motivated to eat.
His last surgery was in June 2022. It wasn’t nearly as radical as the previous year’s ordeal, but it was more discouraging. After the 2021 hemi-glossectomy and flap procedure his oncologist informed Steve that he thought he had removed all of the bad tissue (cancerous or pre-cancerous) and that he believed Steve would not have any more issues. About six months later, Steve began noticing lumps on the right side of his tongue, where he had never had problems. By May, one of those lumps turned out to be cancerous, so he was back in surgery.
After each previous surgery, I had been able to rely on using the good half of my tongue for speech, manipulating food in my mouth, and swallowing. I had learned to make this work even though I was missing half of my tongue, explained Steve. It took a long time to recover from this last surgery, and the effects were more drastic. Even with speech therapy my words were garbled, and I had a very hard time eating. It took longer to get past shakes and soups, and I found myself very discouraged.
The lasting lessons from all of this are still forming for Steve. I have learned the incredible power of gratitude, but I have also learned how easy it is to fall into self-pity and discouragement. I have learned the value of reaching out to others to support them in their trials as well as the power of sharing my own challenges with others. In short, this journey is still ongoing, which is a good thing because I still have a lot to learn.
