Jonathan Cowley: Prosthesis Provides New Outlook, Hope
October 2016 Issue
When Jonathan Cowley noticed a lump in the center of his right palm in February 2013, he didn't think much of it. Still, erring on the side of caution, he consulted his family physician, who told him that while lumps and bumps are a fairly common anomaly, he should report any changes or worsening symptoms. Cowley went about his day-to-day routine for the ensuing months, and that November he left for a cruise with his wife, Michelle, and son, Logan, who was two-and-a- half years old at the time.
During the cruise, things took a turn for the worse. The bump became extremely painful and Cowley experienced tingling and discoloration in a couple of his right fingers.
"I went back to the doctor and he referred me to UCLA's [University of California, Los Angeles'] orthopedic unit," Cowley explains.
The initial consensus was that Cowley, of English descent, was suffering an affliction common among Northern Europeans called Dupuytren's contracture, also known as Viking's disease, which results from a buildup of fibrous tissue under the skin. The fact that his uncle had had it made it seem a likely possibility. But Kodi Azari, MD, FACS, head of UCLA's orthopedic unit, wasn't entirely convinced, and sent Cowley for an MRI.
"Dr. Azari called me pretty immediately and told me it was definitely a tumor," Cowley recalls. "Three days later, I was at UCLA [Medical Center], Santa Monica."
He underwent a biopsy and anxiously awaited the results. As it turned out, he waited seven weeks before the tissue sample ended up at Harvard University, where an accurate diagnosis of epithelioid sarcoma was finally made.
"I remember sitting in a parking lot and I had a message to call Dr. Azari," Cowley says. "He's a very compassionate man, and when I returned the call he said, 'I'm sorry, this is not good news.'" Azari explained to Cowley that he had a rare form of cancer-so rare that only 20 cases per year are diagnosed in the United States. The disease typically afflicts people in their 20s and 30s. Cowley was 40.
"I had no idea what to do at that moment, but thankfully, I refrained from calling my wife and telling her over the phone," he says.
At home, his conversation with Michelle was filled with tears and emotion, but the two quickly focused on a plan of action. They returned to UCLA where they met with oncologist Bartosz Chmielowski, MD.
"My first question was, 'Are my children going to get this?'" Cowley recalls. "I remember feeling extreme relief when he said no.
"Then it was explained to me that this was a very difficult cancer that doesn't respond well to chemo and radiation, so the outlook wasn't very bright."
Azari elected to stay with Cowley through his next two surgeries, partnering with surgical oncologist Frederick "Fritz" Eilber, MD. The first surgery was to take a wider margin of the tumor to confirm the diagnosis. That surgery resulted in the loss of Cowley's two middle fingers and a large portion of the center of his hand. Surgeons used the skin and nerves from his amputated fingers to fill the gap. "It was the weirdest sensation- when you rubbed my hand, it felt like you were rubbing my fingers," he says. In the midst of this, after struggling with infertility issues and being told they'd most likely never have another child, Cowley and his wife learned she was pregnant.
"After that second surgery, Dr. Eilber's father, who is also on the surgery team, said to me, 'You want to be around for your family,' and before he even had to say that he was thinking about amputation, I said, 'OK, when do we do it?'"
Within days, Cowley had his right hand amputated above the wrist.
Finding a Prosthesis
Cowley was fit with a prosthetic hand soon after the amputation surgery. As he continued to lose volume in his residual limb, however, the prosthesis became uncomfortable and didn't fit well. "I fell into a depression, thinking this was a waste of my time, and I convinced myself that I could get by without a prosthesis and just use my residual limb."
Then, scrolling on Facebook one evening, he was intrigued by an ad from biodesigns, Westlake Village, California, featuring the company's High- Fidelity™ (HiFi) Interface technology. "I saw a video of a quadruple amputee, Aimee Copeland, who appeared to be living a full life with four missing limbs," he says. "The socket she was using seemed so secure and flexible, and I literally picked up the phone right then and called."
biodesigns is located near Cowley's Los Angeles home, so he soon visited the facility and met with HiFi inventor Randy Alley, BSc, CP/L. Alley was a primary consultant for DEKA Research and Development, Manchester, New Hampshire, on the DEKA Arm System, or "Luke" arm. He has created other biomechanically advanced interfaces, including the ACCI and X-Frame, to improve patient performance and comfort. Cowley now uses Alley's HiFi-type socket with a Touch Bionics i-limb™ quantum hand with great results, he says. "After I put it on for the first time, I looked in the mirror-my wife was standing there-and I remember saying, 'I'm whole again.'"
The HiFi upper-limb design features open windows, or apertures, with areas of compression and tissue release, offering a secure, stable socket. The i-limb quantum has five independently articulating digits, an electronically rotatable thumb, and i-mo™ technology for single-gesture grip.
"After explaining the difference between the HiFi Interface and traditional approaches, Jonathan could understand our ability to capture and control his underlying bone," Alley says. "But it wasn't until he was in his first test socket that he could really feel the benefits. I remember Jonathan telling us immediately that it felt different, as if it was part of him."
Alley says Cowley experiences greater control, range of motion, stability, and connectivity than with his prior socket, and can reach behind his head without the socket slipping.
Above and Beyond
Cowley gives much credit to his prosthetic limb and to everyone involved in helping him through his amputation and adjusting to his new life. He says he feels particularly indebted to Azari for staying involved with his case when other orthopedic physicians most likely would have left it entirely to the surgeons and oncologist. As an expression of that gratitude, Cowley and Michelle named their daughter, who is now two years old, Charlotte Kodi.
Since acclimating to the changes, Cowley has taken time to reflect. While he is still faced with hurdles, his health screenings have been scaled back from quarterly to every six months.
He oversees a travel management company in West Hollywood, California, which facilitates travel for large corporations, and he speaks to groups and shares his story. "My goal is just to help others, because it's a very dark place," he says. "After you lose a limb, you feel like your life is finished or you'll never be normal again. But I look at it as my new normal and I want to help others do that, too."
Addressing the psychological component was a large part of the healing process, although at the beginning he wasn't entirely convinced of its value.
"I spoke to a psychologist through my wife's employee assistance program provided by British Airways and she recommended that I write a letter to my hand," he says. What he initially viewed as a useless exercise resulted in a 13-page letter. "Afterward, I realized that not having done that would have been an injustice. My hand had done so much for me-it had been with me for 40 years- and I share that story often with docs and occupational therapists," he says. "It's an important step."
Cowley's family has adjusted to their new normal as well. Charlotte never knew her father before his amputation. "Some mornings she'll bring me my prosthesis and say, 'Daddy, hand,'" he says.
Despite keeping routines and emotions as settled as possible for Logan, Cowley says, even at two-and-a-half, their son was very perceptive. "He walked up to us very nonchalantly one day and said, 'Daddy's hand is owie. The doctor is going to put it in the trash.'"
In addition to the benefits that connecting with others and sharing his story provide, his psychologist introduced him to a 16-year survivor of epithelioid sarcoma.
"That's been great," he says. "It gives me that I-can-beat-this attitude and helps keep the negative thoughts and worries at bay."
Tara Buddington is a writer and editor based in Parker, Colorado.