By Julie Cerney
“Why me, God? Why now?”
Six years ago, at age 52, Steve Wiemeyer received news that tested his deep faith and forever changed his world. He had cancer, and the cure would rob him of his natural voice.
It seemed an impossible, unfathomable loss. Steve prayed to be healed, and then he prayed to understand.
Steve has always been something of a Renaissance man. A California native, he grew up with a love for the great outdoors and a boundless curiosity about nature, history, science, theology — the grand how and why of the way things work. He married his college sweetheart, Debbie, and the couple raised a son and daughter in Oregon, where Steve served in the National Park Service. Eventually the family moved to Nebraska, and Steve became facilities director for Grace University in Omaha.
The Wiemeyers’ Christian faith has been a constant comfort and joy in their lives, and as the years passed, Steve felt called to teach and minister to others. He combined his day job with night school, working toward a Master’s in Bible and Biblical Studies.
In 2002, Steve was looking forward to graduation and becoming a full-time teacher. He and Debbie were making travel plans to celebrate their 30th wedding anniversary. The future seemed bright.
“There was just this nagging hoarseness in my voice,” Steve remembers. “We thought it was allergy-related.”
Test after test came back negative before a CT scan revealed the cancer. Steve was referred to head and neck surgeon William Lydiatt, MD, at the Methodist Estabrook Cancer Center Head and Neck Oncology Clinic.
“After Dr. Lydiatt showed us where it was, we could feel the tumor,” Steve explains.
A walnut-sized chondrosarcoma, a slow-growing cancer of the cartilage, was attached to Steve’s larynx, or voice box, the upper part of the windpipe that includes the vocal cords.
“This is a rare cancer,” Dr. Lydiatt explains, “particularly in someone so young who lacks the usual risk factors for a respiratory cancer.” Steve was active and fit; he did not smoke or drink.
Steve wondered if his condition might be related to Agent Orange and other herbicides he’d used as a park ranger. According to the American Cancer Society, data exists suggesting a possible link between workplace exposure to such chemicals and an increased risk of respiratory cancers.
Regardless of the cause the cancer, the Wiemeyers focused on Steve’s prognosis and treatment.
Dr. Lydiatt explained that Steve’s cancer was not a type that would respond to chemotherapy or radiation therapy. Treatment is a total laryngectomy.
Steve’s voice box would be surgically removed and his windpipe (trachea) rerouted so that he would breathe through a stoma, an opening created in the front of his neck.
Steve asked for a straight answer to the key question: What will happen to me without surgery?
The cancer would grow, eventually closing off his airway.
Steve understood the implications from the start,” Dr. Lydiatt remembers. “He rose to the challenge with great strength, humor, spirituality and a naturally analytical approach.”
Of all the senses and abilities we take for granted, Steve began to realize how much he would miss his own voice.
“The voice is like a friend you are used to having with you always,” Steve explains. “It’s a part of me I didn’t want to lose.”
Yet Steve says he went through the stages of grieving fairly quickly. He credits the support he received from family, friends, Dr. Lydiatt and the other members of his care team. Above all, he credits his faith.
Of course I began by asking why me?” Steve admits. “Then I asked why not me? What makes me so special that I should never have anything bad in my life?”
As a person of faith, Steve made a choice to live a purposeful life. He would find a way to grow from this.
While Debbie admits that she needed more time to deal with her own grief and worry, her love for her husband shines through as she describes Steve’s courage and determination, saying, “Steve has never done anything halfway. That’s who he is. He always gives his very best, even with this.”
Steve remembers awakening from surgery to the finality of it all. His voice was gone.
At first, Steve could speak only with a handheld device called an electrolarynx that substituted for his missing vocal cords. The electrolarynx transmitted sound through a soft plastic tube Steve placed in his mouth as he mouthed words to talk.
The result, Steve felt, was too mechanical and difficult for many people to understand.
“I sounded like the Lost in Space robot from the old TV series,” Steve says with a grin. He was eager to master another way of speaking: tracheoesophageal speech.
When Dr. Lydiatt performed Steve’s total laryngectomy, he also performed a procedure called a tracheoesophageal puncture, or TEP. The procedure created a small opening in the back wall of Steve’s trachea to link his windpipe and his food pipe (esophagus).
Tracheoesophageal speech became possible after the surgical site healed and Steve could be fitted with a small silicone voice prosthesis. The prosthesis, which is inserted through the TEP opening, has a one-way valve with a dual purpose. In the normal closed position, the valve keeps food and drink from entering the windpipe. When opened, it allows for speech.
Steve’s speech pathologist, Lauren Kincaid, MS, Methodist Hospital Outpatient Speech Therapy, explains how Steve uses the prosthesis to speak: “Steve breathes in through his stoma, then covers the stoma completely and exhales, forcing air back through the prosthesis. The air pushes the one-way valve open and flows into the esophagus, causing the upper esophagus to vibrate and produce sound. Instead of using vocal cord vibrations, Steve produces sound with the muscles we use to burp.”
Energy, focus and coordination are needed to do this well, but Lauren could see that Steve was up to the task, saying, “Steve has always been highly motivated. He worked very hard to become a skilled and understandable speaker.”
Steve’s new voice is a soft hoarse monotone. In conversation, his face lights up, his expressive brown eyes adding rich dimensions of meaning. “Without volume, pitch or inflection,” Steve explains, “I have to share more than the words themselves.”
Debbie says, “I can read Steve’s sarcasm, but others have to look him in the eye to know when he’s kidding.”
Steve makes the process look easy, but, to him, every word feels shouted. Continuous speech is physically exhausting, making an hour-long lecture a test of endurance much like running a marathon. Steve knew his dreams of a fulltime teaching career were over.
There have been countless other changes and challenges: the long healing process, the intertwined reduction in smell and taste, the management of the mucous Steve’s body still produces, the placement and maintenance of the prosthesis, the airway protection measures necessary now that Steve can drown in the shower without a stoma cover. One of the most difficult adjustments was getting used to the reactions of others.
“I understand as never before what it is like to be different,” Steve explains. “People turn to look at me, especially children. They have a hard time understanding why I look and talk this way.”
Today, Steve focuses much more on what he has — and can share with others — than on what he has lost.
“I count my blessings,” Steve explains, “my lovely wife, two great kids, good friends and the many things I can do and enjoy.”
He marvels at the human body’s design and the gift of a second voice, saying, “I can’t keep my computer running, but look at the body’s incredible capability to recover and adapt!”
Time and again, Steve steps forward to teach and counsel others diagnosed with similar cancers. “I can communicate about this condition in ways health care providers can’t. It is a blessing to help people see they can have meaningful, fulfilling lives after this.”
Steve speaks openly about the challenges, acknowledging that an abundant life is not a life free of problems. In sharing his experiences, he shares the faith that has been essential to his journey. And each Sunday, as part-time pastor of First Presbyterian Church in Woodbine, Iowa, Steve delivers a 30-minute sermon and realizes one of his dreams.
Another dream fulfilled was the long-postponed anniversary celebration. Steve and Debbie celebrated 35 years of marriage with an Alaska land tour and an attempt at white water rafting that failed only because the required gear could not fit around his stoma.
Steve has come to see life since his diagnosis as an adventure.
“I’d love to have my voice back, but the Lord has given me peace about losing it,” Steve explains, “and I am not going to stop living!”
Learn more about Steve Wiemeyer’s remarkable cancer journey through this Heart to Heart video interview with Steve and his wife, Debbie; Lauren Kincaid, speech pathologist; and William Lydiatt, MD, physician, friend and fellow cancer survivor.
