Don’t Fear the Waves: John’s Story

John and his family

Although he’s an engineer by trade, John is a natural storyteller. He has the deep, comforting voice you’d expect from a trusted news anchor or the host of your favorite podcast. Since the early nineties, he has recorded audiobooks for the Library of Congress’s Talking-Book Program, a free library service available to those whose low vision, blindness or physical disability makes reading print difficult. Today, he spends his time in a makeshift recording booth in his home, where he is working on a new project.

John’s story begins twenty-one years ago. Just weeks before Christmas, he noticed a lump in his throat becoming increasingly uncomfortable and knew something wasn’t right. An ultrasound confirmed that the lump was a malignant tumor — thyroid cancer. “It’s not the kind of Christmas greeting you would want to get.” John’s first surgery was on January 10, 2000. Seemingly successful, John wasn’t expecting the surgeon to call a few days later asking him to come back into the office that same afternoon.

“I was looking at the doctor and he was continuing to talk, I could see his mouth was moving, and I could hear sound…it was the most disorienting thing I’ve ever experienced. I told the doctor — ‘you’re going to have to go back and start over because I didn’t hear a word you said after the rarest form of thyroid cancer there is.

The doctor explained that there was something about the biopsy during surgery that just didn’t seem right so they sent it off for a second opinion, which confirmed his suspicion. John had Hürthle cell carcinoma. If they were going to beat this thing, they had to do it quickly and aggressively. John needed to be back in surgery the next day. And recovery would not be easy. His treatment required his body to be starved of thyroid hormones, resulting in severe side effects.

“I went through two of those treatments during which I was radioactive and could not be around anyone. I could not be around my wife for several weeks. Our laundry had to be washed separately. I put on an amazing amount of weight very quickly, I didn’t know to take off my wedding ring before the surgery, but then afterward my hands started to swell. My body changed every day for the worst.”

Additionally, John and his wife, Rayann, had just invested everything they had ever made in a new business just six months prior. “We never thought that the worst that could possibly happen wasn’t that the business would fail, but that I might die and my wife would be left with a new business and I wouldn’t be there to help.”

Fortunately, both John and the business survived. John continued to do full body scans originally every three months, and then dropping back to six months and finally yearly. At seven years in remission, John finally considered himself cancer-free. It wasn’t until 2015 after some routine tests that John learned his cancer was back again.

“I’ll never forget the last conversation that I had with my surgeon that year. He said that my cancer could come back at any time, but at least they had bought me a few more years. That kind of statement will catch your attention.”

John at the Livestrong Challenge Finish Line

With two more recurrences in 2017 and 2018, John thought regularly about what he wanted to do “with a few more years.” He and Rayann retired. They bought an RV and hit the road for six weeks. They wanted to spend time together. They wanted to spend time with their grandkids. An avid-cyclist, John also began to ride his bike several times a week, 60 to 70 miles at a time. “I’ve now done the Livestrong Challenge four times…Cycling keeps my body strong, it keeps my heart strong, it makes it so that I can move, so that I can feel strong,” John explained. He continued, “I wear a yellow Livestrong bracelet to remind myself what I’m trying to do with the rest of my life. I can’t live strong unless I am strong. So, I ride, and I do what I can to support Livestrong because I believe very strongly in what the organization does for cancer survivors and their families and loved ones.”

Since his initial diagnosis, John has endured four surgeries and three rounds of radiation. His cancer is now back once again, and he is currently preparing for his fifth surgery this December. This time, his doctors warn, there is a very serious risk of losing his voice for good. That’s when John’s son had an idea. He said that he wanted John’s grandchildren to remember what he sounded like and suggested that John record books for them. “He said not to record little kids’ books, but to record books that they will want to listen to when they are 15 or 18. So that’s what I’m doing,” John declared. From the Jungle Book to the Old Man in the Sea to poetry, John is now recording as much as he can for his grandchildren before his next operation. “My voice isn’t what it used to be…Hopefully they will like them someday. They seem to enjoy what I’ve given them so far!”

John in his home recording studio

John’s cancer is not curable. Each time it returns, he explains, “we just have to deal with it.” When asked how he has dealt with cancer over the past 20 years, John shared that he doesn’t fear the waves.

“To me, it was just like walking out into the ocean and getting hit by a wave. They could be physical, spiritual, emotional or mental or they could be all four at once. Sometimes the waves knock you down. They can come out of nowhere and hit me during the most perfect day, bringing me to my knees…I can’t ignore it, I can’t deny it. I can’t do that. I just accept that I just got hit by a wave, and then I stand back up and I walk on. I know that there’s another wave coming and it’s going to hit me hard. When it’s done, with the help of my wife and my kids, I’m going to stand back up and I’m going to walk on…That’s the only thing that I know to do.”

“It is remarkable that I have survived 20 years with this disease. I hope that I can record a bunch of books, I hope that I can ride a bunch of miles, I hope that my wife never forgets that I love her, I hope I can help other people not fear the waves. That’s what I want to do with a few more years.

Listen to John’s full story, in his own words, here.

A heartfelt thank you to John, who chose to share his story with us this year as part of Livestrong’s end of year fundraising drive. By making a donation today, you are supporting cancer survivors like John during the holidays — and every day after. GIVE NOW

We know from almost 25 years of listening, that storytelling allows us to connect on our most human level. While it may be impossible to connect in-person this year, we ask that you join us by sharing stories that honor and celebrate your own journey — or that of the cancer survivors in your life. SHARE YOUR STORY

Don’t Fear the Waves: John’s Story was originally published in Livestrong Voices on Medium, where people are continuing the conversation by highlighting and responding to this story.