Running the show

Hospice gave Capt. Don, diagnosed with terminal cancer, the freedom to die on his own terms

CONVERSATION STARTERS<br>Shannon Fuller and Capt. Don Leslie chat during one of Fuller’s weekly hospice visits.

Shannon Fuller and Capt. Don Leslie chat during one of Fuller’s weekly hospice visits.

Photo By Meredith J. Cooper

About the story
CN&R Associate Editor Meredith J. Cooper spent eight months visiting and observing Shannon Fuller and Capt. Don. Her story on hospice care ran over two weeks, with the second installment appearing in the June 28 issue.

Donald P. Leslie was, quite literally, a circus freak. He pounded nails up his nose. He used his body as a pin cushion. He was tattooed from head to foot. He ate and breathed fire.

Of his 10 stage acts, his most accomplished was sword-swallowing. His act was unusual—he could swallow five 30-inch swords with the blades lined up perpendicularly. Others stacked the blades back to front.

An entertainer his whole life, Capt. Don, as he was known to his friends and fans, was also an artist and a musician. He painted on canvas and on the human body. He sang (though he preferred to speak his lyrics so people would pay attention) and played the guitar. He dabbled in the movies—he played the Tattooed Man in Beloved, with Danny Glover, and also appeared in Problem Child.

Capt. Don lived quite the colorful life. But by the time Shannon Fuller met him, in August 2006, those colorful days were over. Decades of cigarette smoking and filling his mouth with white gas that he would then set on fire—in the name of entertainment—had left him more or less bed-bound with terminal tongue and mouth cancer. A hospice nurse at Enloe for 15 years, Fuller knew the drill. But, as she would find out, Capt. Don was anything but a typical patient.

Capt. Don grew up in Boston, one of five children. He was brought up Eastern Baptist, but would devote much of his life to the study of atheism. He often told the story of how he ran away and joined the Ringling Bros. and Barnum & Bailey Circus as a teenager. It was the mid-1950s and, after being picked up by the juvenile authorities, he ran right back, this time to the King Bros. Circus, and got a job in charge of the pony rides.

At 15 years old, he became enamored of the sideshow. When he got breaks from tearing tickets and helping children with the ponies, he would run over to the sideshow tent and stand in front of the sword swallower, Carlos Leal, watching his mesmerizing talent. It was intoxicating.

Eventually Leal, having noticed the boy’s enthusiasm, took Capt. Don under his wing and taught him his craft. It turned out, however, that while Leal was a master fire breather, he had a few things to learn about sword swallowing.

A few years later, under the tutelage of one of his idols, Capt. Don would learn the craft the right way—the safe way. “He was like Elvis Presley,” Capt. Don said of Alex Linton, a world-record holder who showed him how to position his body and slide the metal down and out with finesse. He also provided Capt. Don with some of his first one-liners—of which there would be many—that he would use onstage before and during acts.

The sideshow became home for Capt. Don. By age 19, he was a professional sword swallower in the Christiani Bros. Circus and had started breathing fire. Much of his upper body had been tattooed, mostly during the circus off-season in Los Angeles, and much of it by tattoo legend Lyle Tuttle, a lifelong friend and also a legend, at least within the tattoo community, who would be with him the day he died.

In the following years, he picked up other acts, including the human blockhead, in which he would pound nails up his nose, and the human pincushion, which involved pushing needles through his skin. “Is my bowtie on straight?” he would joke, referring to the pin sticking through the skin in his neck—before the days of mainstream piercing. He was the tattooed man, long before sleeves and full backs became a fashion statement. He sat in an electric chair and on a bed of nails. Pain was apparently his game.

“Most people don’t realize how dangerous this stuff really is,” he said. “They think it’s an act—smoke and mirrors.”

The reality of it was, however, that his two biggest acts were indeed quite dangerous. “When you eat fire, you take it into your mouth—but you have to be very careful because if you inhale it, your lungs will explode,” he explained. Sword swallowing, too, had left friends with internal injuries, some of them fatal.

Life in the circus came with its high points as well as its low ones. Many, many long, sleepless nights would forever leave Capt. Don a night owl. And most of those sleepless nights entailed getting high, in some way, shape or form—although he said he rarely touched marijuana because it didn’t agree with him. In 1980 Capt. Don sobered up after decades of alcoholism.

“I wanted to live,” he said.

In the years to come, he would learn to despise anything that made him feel the way alcohol had—out of control, woozy. This included medication like morphine and vicodin, prescribed in his final days for pain relief.

Clockwise, from above left: Capt. Don breathes life into a ball of fire.<br>During his sword-swallowing act, Capt. Don would lean over to show all the fine folks that he was, indeed, for real.<br>Here in 1957, at age 19, he gets to work on his body art.<br>Capt. Don’s trademark act was his sword sandwich, made up of five 30-inch blades swallowed perpendicularly rather than front-to-back.


Although he’d run away from home to find a new life in the circus, Capt. Don did maintain a relationship with his parents. He married twice, and divorced twice, and had three sons, Don Jr., Daryl and David, and one daughter, Stephanie.

After his circus years were over—in his words, the sideshow died in the late-'80s—he took his act to nightclubs and private shows. He never lost that desire to entertain. It was a performance at the Brickworks in 1989 that brought Capt. Don to Chico.

“I thought, this would be a nice little town to live in,” he said.

In the years he spent in Chico, Capt. Don performed at places like Duffy’s Tavern, and became well-known and well-liked by many in the tattoo community. In addition to wearing a lot of art, he had also been a tattooist for decades.

“Back in the ‘60s and ‘70s, there were so few of us in the U.S. and Canada that we could recognize each other’s work,” he said. “I once got asked by the FBI to help them out with a case, where they had a guy with tattoos and they wanted to know where he’d gotten them.” So, he told them.

In August 2006, Capt. Don learned from his doctor that his cancer was terminal. He was given eight months to live. He was referred to Enloe Hospice, and on Aug. 30 Shannon Fuller knocked on his door for the first time.

He was living in a modest one-bedroom apartment off Huntington Drive near WinCo. His dearest companion, his Jack Russell terrier Little Dog, was with him, and he often had visitors—some who stayed months, others only a night. It was a comfort to have people around.

Just downstairs and around the corner lived Kristen Swain (Kris to her friends), with her husband, Mike, and their 2-year-old boy, Cohen. Swain and Capt. Don had been friends for about eight years, since they had been neighbors in a previous apartment complex.

Swain—tomboyishly pretty and obviously a hard worker—was familiar with hospice. She’d been a caregiver for her father-in-law, and she was studying at Butte College to be a nurse.

So when her friend of almost a decade turned down treatment for his terminal cancer, she offered to do the same for him. She would move him into the apartment above her, so she could be close by, and she would care for him until the end. But her offer came with a warning: between working, school and being the mother of a toddler, she wouldn’t be able to be around full-time. He agreed.

Hospice gave him the freedom to stay at home and maintain his lifestyle, which included cigarettes, frequent visitors and late nights. He would have the ability to leave the house to hit the casinos or attend parties. And, perhaps most important, he’d be able to die on his terms, with Little Dog at his side.

“My job is to keep him feeling as good as I can for as long as I can,” Fuller said later. “If he’s short of breath, we’ve got oxygen set up for him. We’ve got medication. But he calls all the shots. I make suggestions and he picks the best ones—he rejects some, and gets talked into others.”

At the same time, she added, she’s there for the caregiver and family, to answer their questions about anything, from what medication he needs to how to tie down the bed sheets so they don’t slip off to how to cope with a loved one dying.

In Capt. Don’s case, the cancer was growing in his mouth, and its discomfort and intrusiveness would be unpredictable. By the time he was diagnosed, it was in its later stages, and treatment options were less than pretty.

“I went down to Davis for tests,” Capt. Don said. “They wanted to take off my jaw, take out my tongue, and use bones from my leg to reconstruct my jaw.

“Then I’d have to go through radiation, which would do the same thing to me the cancer is doing. And I’d lose two of the joys in life—talking and the taste of food.”

HUMOR TO THE END<br>By the end of 2006, Capt. Don Leslie was more-or-less home-bound, but he held strong to his sense of humor.

Photo By Meredith J. Cooper

Having had all of his teeth removed in 1979—they were so bad, he said, that he was picked out of a line of people to get taken care of first—he wouldn’t have to deal with losing them. His difficulties eating, then, would go from not being able to chew to not being able to swallow, as the cancer would grow and change shape in his tongue and throat.

Shannon Fuller is just about as different from Capt. Don as one could be. She is the mother of four and a Christian. And given that she’s a nurse and she opened her very first pack of cigarettes in Capt. Don’s bedroom—he showed her how to pack them and everything—one could make an educated assumption that she takes care of herself.

She is tall and slender and carries herself with poise and self-confidence. Her smile is warm and laugh hearty.

Fuller made weekly visits to Capt. Don’s apartment, dividing the hour or so between talking with her patient and chatting with Swain, depending on what had happened the week before and how alert Capt. Don was that day. When she wasn’t wearing scrubs—probably the more comfortable option—she dressed nicely, in skirts with blouses and pretty strappy shoes. Capt. Don would call her sweetheart.

In the months following August, Capt. Don’s death would loom in front of him, sometimes seeming just within reach, at others seemingly held at bay. The ups and downs were predictably unpredictable, and it was Fuller’s duty to prepare Capt. Don and Swain for all of the possibilities.

The list of medications would grow, from pills to ease stress and anxiety to liquids to soothe shooting nerve pains. Needs would also change from oxygen to a wheelchair to hospice volunteers who would spend time with Capt. Don when his friends were unavailable.

During Fuller’s weekly visits to Capt. Don’s apartment, there was more going on than just a transfer of information and administration of medication and advice. A relationship was forming. Fuller wasn’t afraid to share her life, and Capt. Don was more than happy to let her in on his crazy stories, of which there were plenty.

Yet their connection came with the knowledge that Capt. Don was dying. His passing could be sudden or it could linger, with the bad days outweighing the good. In 15 years of working in hospice care, Fuller had been in this situation before.

“It’s like hosting a foreign-exchange student,” Fuller said. “You take them into your home, and you accept them as part of your family. But you know that they’re going to leave at the end of the semester.”

By mid-October, Fuller, Capt. Don and Swain had built a rapport that would only grow as the months wore on.

In one of her visits, Fuller sat comfortably in a chair beside Capt. Don’s bed, her legs crossed. An Enloe badge with an outdated photo hung from her jacket.

Capt. Don lay shirtless in his hospital-grade bed, supplied by Enloe Hospice. A colorful blanket covered him from the waist down, but it wasn’t nearly as colorful as his skin, which was patterned and etched with 50 years’ worth of tattoos. And surprisingly few wrinkles for his 68 years. His grayish-white hair, greasy from all the gel he’d put in it, came down past his shoulders.

He reached over to his night table, covered in books, a phone and ashtrays, for a Camel 100. He lit it and took a long drag. He looked at Fuller, and introduced her: “She’s a hospice nurse. And a damn good one, too.”

Fuller let out a genuine laugh, not too rushed as if she had to get down to business. That would come soon enough. Swain, dressed plainly in an oversized sweatshirt and jeans, stood in the doorway holding Cohen on her hip.

Fuller checked Don’s breathing and the levels of his medication to make sure he wasn’t running out—and to keep tabs on how much he was taking. “I took one swig of that an hour ago,” he replied. Questions that would become routine involved pain levels, medication, oxygen and comfort.

“She’s a professional interrogator,” Capt. Don joked. His smile was broad, if not a bit pained, exposing smile lines and crow’s feet. Shifting in his bed, it was clear he wasn’t as comfortable as he was letting on.

“He’s not a big complainer,” Fuller said, then turning her attention to her subject. “But Kris calls me up and rats you out.”

That brought on another chuckle from Cap, which he turned into seriousness. “They just don’t make people like that anymore,” he replied, gesturing in Swain’ direction. “She’s wonderful. She holds my hand when I cry at night.”