My fiancé John is the light of my life. He never stops making me laugh; he’s a complete ball of energy, fun and is a kid at heart. But last year, that light started to fade.
In the summer of 2015, John started to complain of back and hip pain. Maybe he was getting out of shape. Maybe he had played too many years of soccer. We tried everything, but nothing helped. He slowly became less energetic. He didn’t want to do much. He slept longer. By November, he had a persistent cough, night sweats, chills and weight loss. After weeks of annoyance, he decided to seek treatment. At Urgent Care, he was prescribed steroids and cough medicine, but the symptoms persisted. A doctor prescribed antibiotics, but the symptoms continued. The doctor finally decided to dig deeper into John’s issues.
On January 6, 2016, we were told John had cancer. They thought it might be lymphoma or leukemia–a 28-year-old non-smoker with no health issues couldn’t have lung cancer. Then they found a lung mass. Thankfully we knew Matt and Ally Hiznay, who helped us get an appointment with Matt’s oncologist, Dr. Nathan Pennell. After a few more tests and a trip to the Cleveland Clinic, John was diagnosed with Stage IV, NSCLC adenocarcinoma on January 18th. The main tumor was in his upper left lung but it had spread to his lymph nodes, bones and brain. Luckily we were told that he carried the EGFR mutation. In February, he received Gamma Knife radiation to four lesions in his brain and palliative radiation to his hip. Then he started afatinib, an oral drug that targets the EGFR mutation.
I hardly remember those months. Everything was a blur and cancer consumed every minute. We lost track of the number of doctors we saw. I still look back and feel like I was living someone else’s life. We were prepared for lymphoma. It would be a bump in the road, but we’d beat it and keep going down life’s path. But lung cancer? I had four relatives die from the disease. It’s wiped out my family. How is this happening when we are just getting to start our lives together?
John handled it like a champ. He had his breakdowns and weak moments, but for the majority of it, he just kept going. He never lost his humor or his outgoing personality. He was constantly making his care team laugh during every procedure and office visit. The day he was diagnosed, he looked at me and said “I can’t have cancer, I’m a Leo”. That’s a perfect example of John. There was no choice for him. He kept going the way he always does.
Now here we are, almost eleven months after his diagnosis, and he’s already lived past the horrible, outdated statistics. His last scans showed his original four brain lesions had completely disappeared. He had five SMALL ones show up but they zapped them again and are confident they are a result of just leftover cancer cells from the beginning of the year. The
afatinib is continuing to work and his main tumor is down to just scar tissue. The rest of his lymph nodes appear normal and his bones look stable.
Most importantly, he feels back to his old self. He walked a 5K for Lungevity’s Breathe Deep Cleveland event. He’s riding his bike, kayaking, camping, and taking our dog for walks. He has more energy than I do. Cancer is no longer taking over every minute of our lives.
We’re planning our wedding for next year and trying just to enjoy our lives together. In August we joined the celebration for Matt Hiznay’s five-year diagnosis party (see the picture of the guys with their favorite life saver, Dr. Pennell). We understand now how lung cancer can become a chronic disease and hope that we can help remove the stigma associated with it. I’m so grateful for modern medicine.