It is not unusual for patients who have endured a life-altering illness to feel that they have been issued a challenge to do something greater in their lives, both for themselves and for others. Their actions are a testament not just to the power of modern medicine, but also to the durability of the human spirit. The four patients featured on these pages offer inspiration and lessons in strength and courage.
At 4:30 p.m. in early December, it is dark outside and about 5 degrees above zero. Standing in ankle-deep snow behind a plywood shack in a remote, thickly wooded area north of Fairbanks, Alaska, Cindy Abbott is cutting up frozen fish with a band-saw. Nearby are rows of wooden dog houses, where the mixed-breed huskies that will pull her on the 1,000-mile Iditarod sled-dog race sleep on beds of straw. “It takes a lot of food to feed this many animals,” Abbott says, tossing the chunks of Arctic char into a 55-gallon drum of bubbling broth for the dogs.
At 54 years old, Abbott is slender and athletic, with short blonde hair. Dressed in black, she’s wearing thick gloves, a beanie under a hooded jacket, snow pants and heavy white “bunny boots.” Her hands are strong and calloused. Living in an unfinished 8-by-12-foot storage shed with only a small oil stove for heat, she is a very long way from the comforts of home in Orange County, where she teaches health sciences at California State University Fullerton, and lives with her husband in Irvine. Last season, she completed the Yukon Quest 300, one of the toughest trail races in Alaska. To qualify for the Iditarod, which runs each year in March between Anchorage and Nome, she still has to complete two more races. Watching her, you’d never know that she’s blind in her left eye and that sometimes she’s in so much pain that she can’t bend over to feed the dogs. Or that she has a rare and fatal disease called Wegener’s granulomatosis, a disorder that causes inflammation of the blood vessels.
It is so rare that when Abbott began losing her vision, doctor after doctor couldn’t tell her why. She was told, mistakenly, that she had multiple sclerosis. In August of 2007, after 14 years of searching for answers, she was finally diagnosed by UCLA rheumatologist Alan Gorn, MD, after suffering a retinal vascular occlusion, which became the clue to unraveling the puzzle.
Despite the debilitating effects of her disease, Abbott had a formidable goal: climb Mount Everest. A few months before her diagnosis, she was watching a show on the Discovery Channel, Everest: Beyond the Limit, when the idea seized her. Never mind that she had never climbed a mountain in her life. She wanted to use the climb as a forum, to bring awareness to her little-known disease. She trained with a high-altitude expert and ascended some of the world’s tallest mountains, including Mount Aconcagua in the Andes – at 22,841 feet, the highest peak in both the Western and Southern hemispheres – during which she broke her leg in a fall. In May of 2010, she became the 40th American woman to summit Everest. It took 54 days to reach the top, where she unfurled a banner for the National Organization for Rare Disorders, a federation of groups focused on helping the 30-million Americans with so-called “orphan” diseases.
Her feat accomplished what she hoped it would. After seeing her on the news, many people who had lost loved ones to the disease or who themselves had it contacted her. Inspired by their stories, Abbott set herself an even bolder goal: to be the first woman to both climb Mount Everest and complete the grueling Iditarod. And like climbing, she had to start from scratch.
“Last year, I had no idea how to do something like this, what it was like taking care of dogs in the Alaskan wilderness on your own, with all the wildlife and the extremes of Alaska,” she says. “The only way you get to find out is to do it.”
Asked why she takes up such difficult challenges, she responds, “We don’t have to let obstacles in our lives stop us. I’ve been very responsible with my medical treatments, checking with my doctors. I’m making sure I’m not being reckless. I want to show people they can take control of their lives.”
Besides Dr. Gorn, she is relying on Gary Holland, MD, and Allan Kreiger, MD, her ophthalmologists, and David E. Fish, MD, assistant program director of the Pain Medicine Fellowship at UCLA. Even as she’s in Alaska, Dr. Gorn has been adjusting her Wegener’s medication. And just before she left for Alaska, Abbott underwent several pain-management procedures. “Without his treatments, I would not be able to function,” she says. “Dr. Fish is a miracle worker.”
Because of her limited vision, Abbott is using a bright headlight to see at night. She’s been experimenting with a unique style of prescription goggles, trying to find ones to protect her eyes, allow her to see at distance and still let her see her dogs’ feet up close. So far, they’ve all fogged up almost immediately, but she is working on that. She’s ordered harnesses from Norway with reflectors along their length so she’ll be able to see how her dogs are moving, even if she can’t see the animals themselves.
How does training for the Iditarod compare with the Everest expedition? “This is a lot harder,” she says. “There are a lot more variables. On Everest, it was just me, and in this race I have the team. The time away from family and home also is a lot more significant and difficult.”
Abbott and her husband plan to produce a documentary about her Iditarod journey, and a film crew will accompany her. They hope to use the film to teach and inspire medical and healthcare professionals, patients and their families that a rare, incurable disease like hers doesn’t mean the end of the world. In some ways it can be a beginning. As the quote published on Abbott’s website reads: “I have a mountain to climb.”
In September of 2000, Virginia Garner received a fundraising brochure in the mail. It featured photos of triumphant runners and a pitch inviting her to “come to a team-in-training meeting for the Leukemia & Lymphoma Society.” Garner wasn’t a runner, but she was curious, so she went.
By the end of the meeting, she’d decided to run the L.A. Marathon. Granted, she was in remission from chronic myeloid leukemia (CML), a rare blood disease that little more than a year before had nearly killed her. But she wanted to feel strong again.
“I really didn’t get anybody’s permission,” she says. When she finally did ask Charles L. Sawyers, MD, a former UCLA scientist who was instrumental in the clinical trials for the anti-cancer drug imatinib that saved her life, he didn’t react much. “He said, ‘Oh, yeah.’ I think he was flabbergasted.”
That was 12 years ago. Since then, the 67-year-old former high-school teacher has run two marathons and 28 half-marathons and raced in numerous 5Ks. She’s also become a prolific fundraiser for the Leukemia & Lymphoma Society and sits on her local chapter’s board of trustees. Her husband, Van, who overcame metastatic melanoma, is no slouch either. A former dean of the College of the Extended University at Cal Poly Pomona, he has completed 30 marathons and 45 half-marathons. Together, they have raised $260,000 for leukemia research.
On a rainy October night, they’re sitting in a booth at Conrad’s, a local fixture in Pasadena. Ginny, a lively woman with short brown hair and glasses, is wearing a LiveStrong band on her wrist and a purple T-shirt with the words “honored teammate” in white. She’s nursing a glass of beer. Van, a quiet man of 67 with a kind face and thinning white hair, sips a Diet Pepsi as she talks.
Chronic myeloid leukemia strikes about 5,000 people a year in the United States. It’s caused when, for reasons that are not fully understood, two chromosomes swap pieces of DNA, creating an aberrant gene. “It was like a jet plane hit me,” she recalls. “I heard the word ‘leukemia’ and it seared through my soul.” She was told she had three-to-five years to live. An AP English teacher, she stayed in the classroom. It kept her going.
Every day she had to give herself a shot of interferon, the only approved treatment at the time. She developed horrible mouth sores. Sometimes they were so bad she couldn’t talk. Her hair fell out. She was nauseous. Her weight plummeted. After 30 years of marriage, Van started doing all the grocery shopping. Every night he tried to feed her, lifting a fork to her mouth. “Here’s the airplane,” he would say to her tenderly. “Open up the hangar.” “If he hadn’t been with me,” she says, her eyes tearing, “I think I would have died.”
There was no Google then, but Van searched for answers online. He found a chat group for leukemia patients. A friend referred them to the leukemia specialists at UCLA. Garner was told the only cure was a bone-marrow transplant. When a match became available, she decided against the transplant because she had only about a 30-percent chance of surviving the treatment.
In April 1999, a clinical trial opened at UCLA for a revolutionary new therapy for CML. A drug had been developed by oncologist Brian J. Druker, MD, at Oregon Health Sciences University, with funding from the Leukemia Foundation. It was called imatinib, commercially known as Gleevec, and it worked by targeting the genetic defects of the cancer, while leaving the healthy cells alone. Many cancer experts had thought Dr. Druker’s idea improbable, crazy even.
The development of imatinib was a paradigm shift in cancer treatment. Not only did it work for CML, but it also turned out to be effective against other forms of cancer. At UCLA, one of three clinical-trial sites, there was room for only 30 patients. Garner was one of them. Two months into the trial, the blood cells in her bone marrow were normal. Within a year she was in major remission.
When it was clear the drug worked, she remembers Dr. Sawyers giving her the news. “In my mind’s eye, I see that baby face coming into the exam room, skipping down the hall. He couldn’t believe how good this is. Ninety percent of the study patients were responding. It became big news,” she says.
Fourteen years later, it feels to her like yesterday. She tears up and then wipes her eyes with a napkin. Van looks over at her. “I was at the end,” she says. “To have this happen – it felt like somebody pulled me out of the water when I was drowning.”
Today, she wants people to know there’s always hope. That’s why she has devoted herself to talking with patients and raising money for leukemia research. Her email signature offers a quote from Gandhi: “Be the change you want to see in the world.”
Richard “Steelo” Vasquez
This past May, Richard Vasquez stood backstage watching his crew, the Groovaloos, do head spins and flips in front of a live audience on Dancing with the Stars. In a few minutes, he would join them, performing before millions of fans of the hit TV show.
His appearance on stage drew thunderous cheers and applause from the audience. Since suffering a series of ruptured brain aneurysms in June of 2011, “Steelo,” as he is known in the dance world, had to relearn to do everything again – to walk, to talk, to eat. Few thought the talented b-boy, who’d toured as a breakdancer with Gwen Stefani and performed on TV and videos and Off-Broadway, would ever dance again. He was just 32 years old.
When he sauntered onstage to a thumping beat, Vasquez had been out of the hospital only six months. But his body remembered the routine. When the song ended, he stood there listening to the roaring applause and chants of “Steelo!” Tears welled from his eyes. After that momentous night, his motivation to get better and dance took off. “It has done so much for his recovery to be on that show,” says his wife, Penni. “Before, I had to tell him every little thing to do. Now, he has surpassed everyone’s expectations of where he’d be in his recovery.”
The abandoned enthusiasm he received was “amazing,” Vasquez says, now seven months later, his long body folded into a chair. It’s a Wednesday afternoon, and he’s in a conference room at the Centre for Neuro Skills in Encino, where he does rehabilitation therapy five days a week, seven hours a day. A handsome man with dark eyes, he is wearing a black beret, black trousers, a black sweatshirt with comic-strip panels that a friend designed, and black sneakers with red accents. Friendly and warm, he gives a stranger a big hug. Before his brain injury, he was different: loud, take-charge and confident.
His speech is still fuzzy. He tells his story, sometimes repeating himself, a sign of his brain injury. He was in church praying on Father’s Day with Penni and their little boy, Elijah, when he suddenly felt dizzy and collapsed. He was rushed to a nearby hospital, and then transferred to UCLA. He has a sense of irony about the timing. “365 days in a year, on Father’s Day in church,” he says.
Neil A Martin, MD, chairman of the Department of Neurosurgery, performed emergency surgery. For five days before the aneurysms ruptured, Vasquez had been walking around with a headache and vomiting. He was preparing to leave for a big dance competition in Korea. He had just started acting. “We were just enjoying our life,” says Penni, a petite, pretty woman of 29 with long brown hair and big brown eyes. He proposed to her when they were dancing onstage with Gwen Stefani. “We had a new baby. He was in the middle of filming a movie.”
Vasquez doesn’t remember much about the hospital. “I know my wife, my friends were praying for me,” he says. “For me, prayer is key. I gotta pray.”
He pivots to his career. When he was 13 and living in Puerto Rico, where he was born, a well-known dancer taught him to breakdance. When he moved to Los Angeles in 1999, his mentor got him a job at a club on Melrose. After his surgery, he was afraid to do certain moves. But now he springs out of his chair and down to the carpet. Balancing on one hand, he kicks his leg out and then switches limbs.
In October, he danced and spoke at the Visionary Ball, a fundraising event for the UCLA Department of Neurosurgery. A short video of Vasquez’s life played, but most of the audience at the Beverly Wilshire Hotel was still getting settled in their seats. As he walked offstage, TV entertainment reporter Maria Menounos, who’d competed on Dancing with the Stars, held him back. “You guys need to see his video,” she told the crowd. “You guys need to see what an amazing story this man has. The reason he’s able to dance today is because of what Dr. Martin did.”
He and Dr. Martin took a photo together. “I’m 6 feet. He’s 6-feet-4,” Vasquez recalls. He looks down at his arm and smiles, rubbing it. “I get a chill. It’s all good.”
What’s been the hardest part of his recovery? “I want to drive so bad,” he says. “I can’t understand why I can’t drive. I cried a week ago. I was talking to Gary, my PT [physical therapy] teacher. ‘I can’t understand why I can’t drive.’ I feel like I’m in jail.”
Yet, he quickly adds, “I’m alive. I got a great wife and a great family.”
A religious man, he believes the aneurysms happened for a reason. “My ministry is huge now because of what happened to me,” he says. He pulls out his cell phone and scrolls until he finds a photo of a tattoo. Inspired by Vasquez’s story, a guy in Chicago had it inked on his forearm and sent it to him. It reads: “4 God, 4 Dance, 4 Love”.
In April of 1998, Louise Cooper was training for an adventure race in Ecuador. 48 Hours, the CBS News show, was going to shadow her. The event was happening in September, so the elementary-school teacher would miss the first few weeks of class. Although racing was an integral part of her life, when Cooper told her principal about the trip, “she was very upset with me because of the timing.”
It was a warm morning in late October, and Cooper was sitting on the patio of a Starbuck’s in Encino telling her story. Her frosted blonde hair gleamed in the sunlight. “I remember saying to her, ‘God forbid if I were sick, what would you say to me? You would tell me to take all the time I need.'”
In the end it didn’t matter. There would be no race.
Within days of that conversation, Cooper felt a lump in her breast. What followed next was as grueling a challenge as the athlete had ever faced. Cooper’s mammogram came up clean, but she knew something was off. So she called one of her closest friends, an oncologist who lived near her in the San Fernando Valley community of West Hills. His wife said he was out of town. Was something wrong? No, everything’s cool, Cooper said. Five minutes later, the phone rang. It was her friend, Dennis Slamon, MD, PhD, director of the Revlon/UCLA Women’s Cancer Research Program. He quickly got her in to see UCLA oncologic surgeon Helena Chang, MD.
A lumpectomy revealed that Cooper did indeed have breast cancer. It was a particularly virulent variety that Dr. Slamon had been targeting in his research and against which he had been working to develop an effective drug. After three surgeries, including a partial mastectomy, Cooper started chemotherapy. Midway through her treatments, Dr. Slamon put Cooper on the new drug, Herceptin. He fine-tuned her treatment. Because Cooper was so fit, he gave her a higher dose of chemo than most people received. 48 Hours filmed it all, along with four other people battling fatal diseases.
Cooper’s weight ballooned from the heavy steroids. She got weak. She lost her hair. One day, she tried to pretty herself up for an event with her adventure-racing friends. “I had this long skirt, I was going to wear a little beret,” she recalls. But she couldn’t zip up her boots, and when she looked in the mirror, she saw looking back at her “a chubby bald Buddha,” and she began to cry. That lasted about a minute. Then she put on her beret and went out anyway. “What else was I going to do? I wasn’t going to hide in my house,” she says.
She started treating her medical regimen like it was a training program. She crossed off the dates of each chemo session on her calendar. She made herself get up and walk. Gradually, she returned to running. Her racing friends encouraged her every step. “When something is taken from you, your body has failed you, and you don’t have any control, I thought, ‘It’s not going to take everything from me. I will keep up my training,'” she says.
Still, it was hard. “I had lost all my muscle mass. I had no energy at all. You’re just so fatigued,” she says. “The nutrition is not what it should be. Everything tastes of metal. You’ve got ulcers in your mouth. I lost all my nails. I had Band-Aids on my fingers.”
But she endured. A month after she finished chemotherapy and radiation, she ran the Catalina Marathon. Five months after that, she completed the Badwater Ultra Marathon, a 135-mile race through Death Valley. “I wanted something challenging, because I hadn’t been doing anything challenging other than seven months of chemo,” she says. She finished the race in 40 hours, the second woman to cross the finish line. “That’s when I thought, ‘I’m back.'”
She never stopped teaching. When school began, they asked Cooper to wear a hat so her bare head wouldn’t frighten her students. The first day, a little girl asked her, “What’s under the hat?” Did the kids want to see? They did. “You look really cute,” they told Cooper. One child said, “You look like a Kew Pie doll.” The hat stayed off, and Cooper’s students painted designs on her head.
She tears up thinking about their kindness. Two boys shaved their heads in solidarity. Others measured her hair as it inched back. “I let the kids dictate how it was going to be at school, but I was always in control of what I was doing. It made me feel I’m not at the mercy of everyone else,” she says.
Her positive attitude got her through the ordeal. “I never let cancer define me or my life,” she says. “It just reinforced that I’d always been doing the right thing. It’s important to have goals and to allow people to help you. So often, you feel like you don’t want to be a burden. I never reached out as much as I should have.”
Now 59 years old, she has a new athletic passion: a desire to climb high peaks all over the world. So far she has climbed volcanos in Ecuador, Mount Kilimanjaro in Tanzania, Mount Elbrus in Russia, Mount Aconcagua in Argentina and missed summiting Mount Denali in Alaska due to an avalanche. She also has become involved with Project Athena, an organization that helps women who have overcome medical setbacks to realize their athletic dreams.
“This is my way of trying to inspire other women,” she says. “Hey, you had cancer. That’s not who you are. What do you want to do?”