Thank goodness Nancy Becker Kennedy’s oncologist wisely decided to aggressively treat her breast cancer. Photo by Chris Benson
Her rehabilitation doctor, however, told her to have the cast removed immediately or she would end up with bed sores. When Kennedy relayed his instructions to the orthopedist, she was rudely informed that she was not going to dictate her own care. So she had her rehab doctor consult with the orthopedic doctor, but it was too late. When they finally removed the cast, her leg was covered with pressure sores.
“I was working as an actress on General Hospital as a contract player at the time, but because I had to have my leg straight out in front of me, I couldn’t drive or play my part on the show. I really feel that was part of the reason they didn’t renew my character. I had to be off set for months. Out of sight — out of mind.”
She eventually recovered both her health and her career, going on to guest star in several television shows as well as becoming a successful sit-down comedian. The next time she had to deal with a health scare, she made sure there were no mistakes. “My gynecologist discovered a lump and sent me for a mammogram. Medical equipment was even more difficult to access in 1996, and the mammogram operator didn’t want to run the scan. He assured me the lump was nothing.” Kennedy and her doctor refused to take no for an answer, and wouldn’t you know it, it was cancer.
She and her friend researched the best cancer surgeon and oncologist. But even the best was hesitant to be aggressive because of her spinal cord injury. The cancer surgeon wanted to get the cancer out immediately, but took the more conservative approach with a lumpectomy instead of a mastectomy. He also did not think she could handle the chemotherapy because of her disability. But her oncologist believed she could handle chemo as well as anyone else — and she did. “Truthfully, it was easy the first time. No hair loss, no vomiting. It was more psychologically damaging — it scared the shit out of me.”
Unfortunately the cancer returned 10 years later, and Kennedy had to undergo a mastectomy and a stronger regimen of chemotherapy. It was a long process, and there were many more pitfalls this time around. “I got really weak,” she says, “lost my hair, got bed sores, and had to have blood transfusions.” She begged the doctors to let her have the transfusions as an outpatient. They reluctantly agreed. She knew she was making the right decision. “The hospital is perilous the longer you stay,” she says, “especially if you have a weakened immune system.”
Dangers of Hospitalization, Being Careful
I would have to agree about the dangers of hospitalization. In December 2011, I broke my left leg in three places after misjudging the slope of a driveway. I had two surgeries, spent four days in the hospital and the last 18 months fighting several recurring staph infections.
I am 30 years post-injury and have dealt with the typical secondary issues: UTIs, broken toes and the occasional minor decubitus ulcer. But my 2003 pregnancy and the birthing process was probably the most taxing health issue I’ve encountered since I crashed my car and sustained a C8-T1 incomplete SCI in 1983.
The broken leg required me to keep my leg outstretched and immobilized for the first four weeks. In some ways adapting to the larger hospital-style wheelchair was easy. My house was already wheelchair accessible, all my transfers were even heights, and my dogs loved the expanded lounging area my outstretched limbs created. In other ways, I felt more disabled than I had since those first few tumultuous, post-injury years: I couldn’t drive, needed extra help with transfers, and had autonomic dysreflexia spasms and sweats 24/7.
The frustration lasted for weeks, but I adapted. I’d dealt with disability before, I could deal with this. What I wasn’t ready for were the staph infections that continue to plague me. The first one occurred less than a few weeks after my hospital stay. I got a bug bite that went from the size of a dime to a 50-cent piece in two days. Within a week, I ended up in the hospital for an additional surgery to remove the infection. Now every time I get a scrape or a scratch, a pea-size ball develops under my skin. It grows, bursts and becomes an open wound. I continue to see a wound care specialist who attempts to control the infection by keeping the wound clean and applying topical antibiotics like Iodosorb or Bactroban ointment (mupirocin).
If the wound gets worse, I have to take antibiotics. Antibiotics are the last resort because, God forbid, these infections can evolve into methicillin-resistant staphylococcus aureus (MRSA). Right now the staph I have is just a distant cousin to that nightmare, but it has changed the way I live. I am much more careful about everything I do.
Raz Cue, 48, of Las Vegas, has also become more cautious after having a minor injury turn into a major problem because of his disability. “I didn’t know anything was wrong,” says Cue, “but I started getting massive spasms and my leg got weak.” A visit to the doctor revealed the cause: his foot rubbing against the carpet of his new car for several weeks had created a massive blister oozing with pus. He had been completely clueless. “I’ve been an incomplete C5-6 quadriplegic since 1980. I was 15, having fun, dove into a pool and broke my neck. I don’t have pain sensation in my foot, so I had no idea how bad it was.”
Cue experienced the same initial issues with adapting to life in a chair, but like most folks he got used to just living life. He worked in music, owned a recording studio, got a bachelor’s in history, and moved into writing. His first book, Bud’s Love Bus, is available on Amazon.com, and he is currently working on two other books. He plays poker, enjoys video games and is interested in pursuing a degree in electrical engineering. Reflecting on his “disability squared” experience, he says, “I was lucky my foot wasn’t infected, but I had to be so careful afterward to avoid infection. I got a real sense of my vulnerability.”
Although he was only laid up for a few weeks, it made him aware that something as minor as a blister could cause major problems. “I could not believe something so small could affect my independence. It was a real mind f*ck — I began to understand how a major injury or illness could totally mess up my life.”
Being Aware, Surviving
Bobby Rohan, 41, knows an additional injury or illness can screw with your mobility and reminds people to be aware. “Any issue, even if it’s just redness or swelling, should not be taken lightly. Take a critical look and treat it immediately before it gets bad. If you ignore it, odds are it will become serious.” Rohan, a triathlete at the time, sustained a C5-6 complete injury in a bike versus bus accident in 1989. He handled the situation by applying his successful athletic mentality. “Recovery was difficult, but I always worked hard to be my best and push my body to optimal performance.” Now he drives independently and uses a manual wheelchair for mobility. Married and loving life, Rohan is currently the supervisor for No Barriers Peer Mentoring. His advice is to always look for a silver lining.
“Years ago, I got a small scrape on my left pinky. I use my hands so much pushing that within a week the daily wear and tear created an infection that went clear to the bone.”