Oral Cancer Survivor

Keep your energy for the battle

Diagnosed at 61 with Stage IV squamous cell carcinoma on the floor of his mouth, Ron Schmidt knew the odds were against him. He credits his positive outcome to his wife, his medical team and his faith. He hopes his story inspires others who are facing a head and neck cancer diagnosis.

While vacationing in Cuba with my wife Shivaun, I felt a bump in the bottom of my mouth. Shivaun is a cancer researcher, and she demanded I get it checked right away. As soon as we returned home, I went from urgent care to my primary care physician to a head and neck oncologist, who immediately biopsied it. My assembled team wasted no time scheduling surgery to remove it. Even though I acted quickly, that little bump was very aggressive and had already moved to lymph nodes in my neck and in my mouth. My diagnosis was Stage IV squamous cell carcinoma of the floor of the mouth.

Because Shivaun is in the medical field, she was able to connect us with some of the top head and neck cancer professionals. She also knew how serious my diagnosis was. Lucky for me, she has a caregiver type of personality. She doesn’t get too emotional. She just kicks into gear and gets things done.

Treatment began right away with extensive surgery to remove part of my jaw and most of my lower front teeth. For reconstruction, the doctor used skin from my leg to rebuild part of my mouth. I have a partial plate where my lower front teeth were removed and now I can chew better, and I look better.

I followed surgery with radiation therapy 5 days a week for 7 weeks then quarterly scans to monitor my condition. That is how we discovered the cancer had returned, and it was in my right lung. I had surgery to remove the lower right lobe of that lung.

At this point, my oncologist recommended adding immunotherapy to my treatment plan. I trusted him completely, so I agreed. I asked how we’d know if it was working, and I’ll never forget his answer. He said we’ll never know if it is, but we will know if it isn’t.

I had monthly immunotherapy infusions for a year with no side effects and nothing has shown us it isn’t working. I keep my follow-up appointments for scans. My last scan showed I was NED (no evidence of disease).

As a public speaker and commercial insurance broker, it was hard not to feel emotional about my diagnosis. Cancer hit me right where it counts — my speaking tool. It was a long road back to good speech. I worked with a speech therapist twice a week for four months, and I also benefited from swallow therapy.

For me, radiation therapy was the toughest part of treatment, but my team helped me manage it. A feeding tube was necessary because it was not possible to eat by mouth. I lost 50 pounds and have kept 40 off. I’m pretty comfortable at this weight and still drink the protein smoothies recommended by my naturopath. They helped rebuild my body once I could eat again.

The radiation to my head caused lymphedema on the left side of my cheek, neck, throat and tongue. We treated it with a pneumatic device that massaged the area. I had headgear to massage my lymph nodes and wore a vest for massaging my underarms and torso. I feel like I have the lymphedema under control even though it will never completely go away.

One permanent impact is that because some salivary glands in my mouth were removed and because of radiation therapy, my mouth gets very dry. It makes it very important to drink plenty of fluids while I’m eating. My sense of taste has changed, and I find it best to stay away from spicy foods.

My faith has been instrumental. Early on I watched a video of a minister with Stage IV cancer. She described putting all your energy into opening one of two doors. One was a door of fear; the other a door of faith. I chose the door of faith and focused all my energy on healing. That put me in the right mindset. Even when I go for follow-up scans, I don’t get nervous about what I might find. I am confident I’m healed.

It was so powerful to talk with people who’d gone down the same path. I highly advocate that anyone on this crazy journey have someone who has gone through it to hold their hand. I look forward to sharing my experience with others through Friend for Life Cancer Support Network.

Life is good now. I’m retired from my primary career and still as passionate as ever about life. I no longer sweat the small stuff. I get up every morning and help the sun rise. I row or swim, eat a little food, nap on the beach, then I take the rest of the day to do whatever I feel like doing.

Surround yourself with the support of a good medical team and loved ones. Choose to have a positive attitude and the faith to heal.