Mary Canzater and her son Chris Hutcherson sit in a corridor of the Huntsman Cancer Institute one Friday in mid-May, waiting for him to be called in for a CAT-scan.nn
“It’s probably still the same,” Canzater says, rubbing her bare arm as if she was cold.nn
“Probably,” Hutcherson says.nn
The “it” she refers to is a desmoid tumor, one of four bound around Hutcherson’s abdomen, oddly resembling, at least in an old CAT-scan, a series of sleeping white rabbits. A fifth is attached to his lower spine. Desmoid tumors develop in fibrous tissue such as tendons and ligaments. Typically invasive, they stick to and weave themselves into nearby structures and organs. Hutcherson requested the new CAT-scan and a MRI because in the last month he and his mother have both suspected one of the tumors was growing.nn
After Hutcherson departs for the scan, Canzater says, “Chris has changed a lot. It’s draining [the energy] out of him.?nn
It’s also drained his color. Hutcherson is 29. Photographs from his early 20s show a much darker-skinned African-American with a bodybuilder’s frame. Now Hutcherson is thin, except for a distended stomach. His facial features aren’t gaunt so much as sculpted, projecting a preternatural wisdom that’s almost intimidating. Put him against his muscular brother Craig, who epitomizes health and vigor, and it’s like comparing marble and clay, says Rocky Mountain Hospice chaplain JeanneLauree Olsen.nn
Rocky Mountain is one of more than 55 hospice companies in Utah, three times more than there were just four years ago, says Utah Hospice & Palliative Care Organization [UHPCO]’s executive director Dan Hull. But, while the hospice model of end-of-life care is achieving increased national acceptance, Hull says less than 40 percent of terminally ill Utahns choose hospice, the European model that emphasizes a transition to death through pain management and acceptance.nn
For years, Hutcherson bucked the odds for his rare cancer. In 2002, when doctors first diagnosed his disease, they gave him three years to live. Last summer, his doctors told him they could do no more. “Medically, he was a dead man,” Olsen says. And so Hutcherson signed up for hospice a year ago, courtesy of Medicaid.nn
Hospice, Olsen says, “is prescribed by default when doctors don’t know what else to do.” Perhaps that partly explains hospice’s image problem. There’s a perception that hospice means giving up, resigning yourself to death, even a hideous suggestion that it somehow hastens death. But a recent national study, says UHPCO’s Hull, reveals that hospice actually prolongs life. The symptom-care management, along with the emotional and spiritual help hospice provides, often extends a life previously consumed by trying to cope with the damage from toxic drugs and surgeon’s scalpels.nn
Hutcherson and his mother say they sought hospice’s help to better manage his pain and for relief of mind, rather than to prepare him for his death. Hospice focuses on providing support 24/7 at a patient’s home. Registered nurse Andrea Carroll helped him organize his pill-taking schedule and routinely checked on his physical condition. Social worker Heather Smith guided him through voluminous medical paperwork and arranged for Angel Flight, Inc.'an organization that provides transportation for patients in need'to take him to California to see his grandmother. Chaplain Olsen talked to him and his mother about their struggle with his disease. They each provided company and a willing ear.nn
But when Hutcherson’s tumors started “yawning” this April, as he describes the way they stir each spring, he wanted to explore the remaining treatment options, scant as they were. That meant he faced the Hobson’s choice of forgoing hospice support in order to learn if oncologists who had already washed their hands of him had anything else to offer.nn
Hull says Hutcherson’s situation is far from unique. Hospice organizations are lobbying for state legislatures to integrate hospice care more fully with medical treatment. But, for now, money keeps the two separate. “It’s a payment issue,” Hull says. “To seek hospice, you have to quit having all other benefits.” Health insurance will pay for doctors or hospice, but not both.nn
Hutcherson is dying young, and no one knows how long he has. His healthy organs, as they are built to do, fight far harder to keep him alive than those of people in their 80s. But it’s not just his body that makes his end of life so unpredictable. Add the weight of life tasks not yet done, concerns over burdening his family and leaving behind a grieving mother, and the picture becomes more complex.nn
Understandably, Hutcherson prefers to focus on the day-to-day. “What good is life if you have to think about death all the time?” he asks.nn
Among the hospice team that has worked with him over the past year, Olsen has tried hard to help him answer that question. Much of what she does is listening. Hutcherson needs to tell his story, he says, especially if it will help others going through what he now endures. It’s why he agreed to share his struggles with a journalist. But what his story provides is not only an intimate insight into coping with a terminal illness at a young age but also how much closer to death a hospice patient who wants to fight for his life can be brought by the financially driven division between end-of-life and hospital care.nn
“You deal [with] the hand you’re dealt,” Hutcherson says in the measured tone of a long-distance runner pacing himself for the miles ahead.
Springtime for Tumors
ttHutcherson’s battle with cancer started one Saturday in March 2002. The 24-year-old was in a Salt Lake City ShopKo when his leg started throbbing. But his leg pain wasn’t the first sign his body was failing. His friends had been joking that he looked pregnant. An X-ray eventually revealed a huge mass in his abdomen that had pushed all his organs to one side.
A Jehovah’s Witness, Hutcherson refused blood transfusions for the operation to remove the tumor. The faith’s doctrine views blood as sacred. “We don’t want to put things into our bodies,” his mother explains. “If you die, you die.” Instead, Hutcherson took three shots of blood builders before doctors opened him up from chest to groin.
At LDS Hospital, a 6-foot-1-inch doctor held up the 10-pound tumor a surgical team cut from Hutcherson’s belly during an eight-hour operation. “It wasn’t quite the length of his arms, but it was out there,” Hutcherson recalls.nn
After the operation, Hutcherson’s life became a list of negatives. “I can’t work full time, can’t run, can’t weight-lift like I used to or play football. Never was a drinker, can’t really party. If I get out there and dance, I pay the next day.” He eventually had to give up his apartment and move into his mother’s house in Murray.nn
Eighteen months after the surgery, a scan revealed four new tumors, including two connected cantaloupe-shaped ones. “I couldn’t have surgery again,” he says. “I’d live on a machine. They’d have to remove my intestines, organs. [The tumors] are attached to everything.”nn
Last June, Hutcherson thought the end was near. “I was pretty much in kidney failure,” he says. His doctor proposed jury-rigging a remarkable system of tubes and ports that would allow him to drain the main tumor swelling in his belly.nn
“He was drowning in this, his body dying,” his mother says.nn
Hutcherson said goodbye to patients in a support group at the cancer institute for the last time. He has a hard time sharing. “I just handle it myself,” he says.nn
By then, Hutcherson and Canzater still hadn’t talked about his death. “Mom tried to get me to open up,” he says. “But she doesn’t want to think about when I’m not there. She doesn’t want to go there. I try to not go there myself.?nn
After this last-ditch operation, Hutcherson signed on at Rocky Mountain Hospice. Olsen describes the all-female team of caregivers as “Amazonian” women standing between Hutcherson and the specter of death. But even they can’t fend off the multiplying masses inside him. Hutcherson compares it to a schoolyard bully with its own personality and mind. “It talks to me all the time,” he says. “?I’m getting ready to do this, watch out, I’m going to have some more fun with you.’ It takes you for a ride, starts beating on you, makes your organs hurt.”nn
Each spring, when his tumors go on the offensive, all he can do, he says, is roll with the punches. “I don’t have the luxury to feel down or depressed,” he says. If he shows weakness, if he reveals how much pain he is in and how much the tumors make him suffer, he’s giving way to his doubts, which will in turn undermine his faith'“and it’s my faith that keeps pushing me along,” he says.
tt“What are you doing, Chris?” Olsen asks as she steps into his mother’s house one Tuesday afternoon in March.
Hutcherson sits on the living-room couch, a tube running from his side, over his knees and down to a bag at his feet. Yellow liquid seeps along the tubing. He drains his tumor once a week. A few months ago, he bagged 600 milliliters of liquid'worryingly, by April, it was down to 250.
“It’s astonishing to walk in on him so nonchalantly performing a procedure most patients would have to be taken to hospital for,” Olsen says afterwards. Part of hospice’s goal is to keep patients like Hutcherson away from endless hours in ER waiting for treatment. But that Hutcherson is so actively involved in his own treatment stems also from his training as a certified nursing assistant at Stevens-Henager College'and his will to live.nn
Along with the rest of the hospice team, Olsen has a heavy workload. In January, 50 patients under her spiritual care died; in February, the same again. Yet, with Hutcherson, she is very much in the now.nn
For Olsen, “being around Chris is visually like watching a child sleep.” They share a quirky affinity. Crowned with a mane of blond hair, Olsen dresses exuberantly in ankle-length dusters and colorful blouses. Her dramatic attention to sartorial detail is one Hutcherson shares, although in a more subdued fashion. Olsen admires his vanity, the way his bandana and his slippers are the same shades of blue as his terrycloth robe, which he wears tied like a smoking jacket.nn
Ordained a minister in 1994, Olsen joined Rocky Mountain Hospice three years ago. She loves the drama of what she does, the intensity of the world of the dying, along with being “smitten with the spiritual path.?nn
That spiritual path is why Olsen has come to visit. She sits in a chair facing Hutcherson and Canzater on a sofa in the living room. Hutcherson’s Chihuahua Jasmine curls by his side. Olsen asks Hutcherson to contemplate his future beyond this life.nn
“I have this little saying,” Hutcherson offers. “I’ll always dance. Time to dance with the devil every time I go into surgery.?nn
“You’ve fought the big fight, it’s time to lay your body down,” Olsen says. A time will come, she continues, when his dance changes to a waltz. As it slows, he will be accompanied by the hospice team. He will sleep more, and who he is will become more concentrated.nn
“You’ll experience what it means to express yourself out of your body,” she tells Hutcherson. “Not a dying time [but] a birthing moment, a shift of consciousness, a freedom that we call the Rapture.?nn
“I’ve heard that before,” Canzater says. She worked as a nurse at the Huntsman Cancer Institute and for a home health-care services company. “Something’s lifted off of [the dying]. They feel free.?nn
Olsen talks about the gift of Hutcherson’s warrior spirit, that he will experience the best dance, “the dance into the mystery.” She asks Hutcherson what he thinks.nn
“Sounds like it will be fun,” he says.nn
“Knowing how hard you fought, it will be nice to get rest, won’t it??nn
Canzater and Hutcherson stare at her like two chicks watching their mother give them food.
ttA few weeks after Olsen brought Hutcherson’s death into his living room, he decided to take down the do-not-resuscitate order pinned on the wall of his mother’s house in the event paramedics were called.
“I questioned myself after I [put it up]” he says. “Wait a minute, that’s not me. ... I’m not ready to finish fighting yet.?
Olsen saw the DNR decision in different terms. “Because he’s doing so much better, reality and denial collide,” she says. “The flavor around hospice is so optimistic, it’s easy to misinterpret.?nn
But then Hutcherson hit some problems. His car was repossessed, he could not find part-time work, tensions boiled up within the family. In late April, just as tulips bloomed across Salt Lake City, his tumor started “yawning” again.nn
“Arguing only makes the tumor act up even more,” he says. “It feeds on anger.?nn
The tumors’ relationship with Hutcherson is, to say the least, parasitical. The first tumor fed off his blood supply. An experimental chemotherapy made another tumor grow. Then there’s food. While his weight increased recently, he didn’t know how much was tumor growth and how much body fat. He suspected the former. “I’m eating like a horse,” he said. “I can’t get enough to eat. I have an unfull feeling. The tumor’s eating everything up. It takes half of what I ate.”nn
In the face of constant bad news, Hutcherson always seems calm, offering no glimpse of what he feels inside. Part of his strength comes from a determination to fulfill his destiny. When he had his last operation, he dreamed his dead grandfather offered him a hand up, then told him it wasn’t his time yet. “Right now, I’m not ready [to die]. There’s a little voice in the back of my head [telling me] I have other things to do.”nn
Hutcherson calls them “reckless things,” like learning how to roller blade and ride a horse. But it’s clear his appetite for the intimate also keeps him going. He loves spending time with his mother, family and friends, coloring, reading, playing games with his nieces and nephews. Recently, he crocheted an Afghan for a baby niece, a skill he picked up after accidentally signing into home economics classes at high school instead of woodwork and archery.nn
His last relationship was with a woman he met on the Internet, he says, three years ago. She asked to go with him one day when he went for chemotherapy at the Huntsman. The experience proved too much for her, Hutcherson says, and they broke up. He doesn’t get out of the house much, except to go to the cinema with friends and visit his aunt Sandra who runs a hair salon on State Street.nn
It’s hard to see him doing anything too energetic. There’s a stillness in the way he holds himself, the way he moves, that’s almost hypnotic.nn
He likes to sit on the back step of his home under an umbrella for shade, listening to sounds, to the world around him. “All the noises most people don’t hear,” he says. “If you really sit in silence, you hear a lot more than if you have an active mind. With a quiet mind, you hear a bus, a garbage truck, people talking down the street.” He likes being alone, he says, just sitting and hearing “the sides of your brain talking.?
The Crying Game
ttIf family issues and a lack of employment opportunities were not enough, Hutcherson encountered a new crisis in early May. His tumor briefly stopped draining. Sensations of nausea had already alerted him “there wasn’t any space down there, something was moving around.” He put saline in to flush out the line, but when he tried to extract fluid with a syringe, it was like pulling on a bulldozer.
A few evenings later, Hutcherson woke to find himself shaking violently. His inability to drain his tumor had preyed on his mind too long, he says. He rang Carroll who prescribed him extra pain medication.
When Olsen learned of Hutcherson’s bad night, she went to visit him later that week. He was sitting in a rocker, watching an old episode of M*A*S*H, his feet delicately crossed beneath him, when she arrived. He didn’t turn down the volume.nn
Olsen brought up Hutcherson’s newfound desire to be taken to hospital if he suddenly took a turn for the worse. She asked him if there was a night when the pain became unbearable, whether he thought he’d be better off in hospital.nn
“Only as a last resort,” he said.nn
Meanwhile, one of M*A*S*H’s most famous episodes blared out. B.J. Honeycutt has learned Radar is going back to the United States. Unable to cope with his envy and longing to be with his stateside family, B.J. breaks down. In an extraordinary, almost hallucinogenic moment, while Mike Farrell as B.J. gives a tear-drenched performance of a man driven to emotional breaking point, Hutcherson hypothesized in typically matter-of-fact tone about how he would feel about dying in an ambulance while being rushed to the ER.nn
Olsen engaged Hutcherson in an “imaging exercise,” a common practice for hospice patients. She wanted him to picture a small boat moving out into the ocean from a harbor, then to describe the boat.nn
He resisted at first. Then he said he’d put a canopy on it so he wouldn’t get sunburned. He would have supplies: food and water, a fishing pool, a fire starter in case he is stranded on an island, a compass if he got lost. Along with these survival tools, he added “a homing device, so they can come and get me.?nn
“They?, Hutcherson said, were his family'and God.
The Return of Dr. Kildare
ttThe weekend Hutcherson and his mother waited for the results of his MRI and CAT-scan, he saw Shrek the Third at the cinema with friends, only to nod off because of the powerful painkillers he was taking. On Tuesday morning at 8 a.m., Hutcherson met Huntsman oncologist John Ward to review the results.
Ward had him take off his shirt and lie down. His stomach was bloated'like a large book had been sewn under the flesh. Several drainage tubes that came out of his left side were taped to his skin. The results showed a tumor in his pelvis had tripled in size, its cystic areas filled with fluid. The tumor that was connected to the tubes, however, had shrunk.
“Where do we go from here?” his mother asked in a tiny voice.nn
Ward offered three options: Do nothing and continue with hospice, try a new chemotherapy cited in a case report that saw three patients’ with Hutcherson’s condition go into remission and the other four experience tumor shrinkage, or scour the country for clinical trials. “It’s not a used-car lot,” Ward said. “You don’t have to make a decision now.” What Hutcherson had to decide, Ward added, was whether or not “the juice was worth the squeeze.?nn
Two weeks later, four Rocky Mountain employees'chaplain Olsen, physician Karen Lee, recently appointed social worker Michele Dabrowski and nurse Carroll'gathered in Hutcherson and Canzater’s living room. Hutcherson told them he’d more or less decided to try the chemotherapy. He wanted to consider their opinions. But, if he’d expected the team to wholeheartedly support a decision that his mother was deeply concerned about, then he would be disappointed.nn
They told Hutcherson about the radical, highly aggressive chemo therapy Ward cited, stressing that he was in for 94 hours of an infusion of two drugs dripping into his vein. In addition, the seven patients in the report had less-advanced tumors and did not have his kidney problems. There was a chance, Lee said, he might not leave the hospital, although it was doubtful that was news to Hutcherson.nn
“I know my best choice,” Canzater said. “Leave things as well as is.” She worried how the tumor would react to the chemo, how Hutcherson’s fragile kidneys would fare. Later, Olsen paraphrased Canzater’s view of the chemo’s impact on the tumor as akin to poking at a snake with a stick.nn
“But if I don’t try this, it will make me feel like I’m giving up, throwing in the towel,” Hutcherson said. “If I don’t, what’s the use of taking anything else, any more medicine?” Along with the impact of hooking him up to an IV to pour the medical equivalent of Drano into his system, he’d also have to give up hospice if he opted for treatment.nn
To help her out with Hutcherson, Canzater said she’d have to call in relatives who had their own lives and families to run, several living in other states. The alternative was home health-care services, which, Canzater said, offered limited assistance. In order to fight tumors he feared were preparing a new attack, Hutcherson would have to give up the very support system that had gotten him this far. And he was turning to a therapy poisonous enough it just might end his life.
Row Your Boat
ttAfter 90 minutes of discussion, Hutcherson seemed exhausted, struggling to hold his head up. Despite the support he was receiving, it seemed as if he was alone. Still, he didn’t back down. He said he’d already settled on the chemo despite the lack of research into the one-off seven-person trial. “For me, it will hurt more not to try than to try. And I know it’s going to be hard on Mom and everybody.?
Canzater told him whatever he decided, she’d fight for him all the way.
“You have to be at peace with this,” Dabrowski said, squatting down in front of him.nn
“To a point, I am,” Hutcherson said, his voice wavering. “I am very tired; I am so, so tired, but I’ve got to keep going.?nn
“You can let that tear fall out of your eye, you know,” Dabrowski said.nn
It seemed strange these hospice workers should have to gather with Hutcherson to advise him on his surgical options, when end-of-life care is about the very opposite of what Ward proposed. But for Olsen, what’s far stranger is that Hutcherson has to choose between 94 hours of channeling chemo into his body or 94 hours of TLC from his hospice team. “Why should it have to be either/or?” she says.nn
But, finally, it’s Hutcherson’s Job-like faith and his love of life that provides the rock from which he fights the disease. That spirit is etched into the lines of Hutcherson’s face and caught in his gentle, self-deprecating humor, his determination not to give up.nn
For a Christian, the question of God’s role in this process surfaces. Hutcherson says he did some serious soul-searching for a while, but never got angry at God. “I feel him all the time. He keeps me waking up in the morning, going through the day. [The tumors] were put there for a purpose, to see how and what I would do. I’m finding out what that purpose is. ? This is the hand I have to play.?nn
Also, it’s a hand Hutcherson plays for himself. A few days after he consulted his team, he decided to try a Chinese herbal tea a friend who had recovered from cancer recommended. If it doesn’t work by the end of July, he says, then he’ll go for Ward’s chemotherapy. That will give his family members, he adds, time to get organized.nn
In the meantime, Hutcherson sails his boat, heading out to sea, survival gear loaded, the canopy shielding him from the glare of the sun. Just before Olsen finished her picture imaging exercise, she had one more question for Hutcherson.nn
“What does it feel like to get past the big boats and the breakwater out into the ocean?” she asked.nn
“One thing I can tell you, you have to watch out for the big boats, cause they ain’t watching out for you,” Hutcherson said. “You have to be rowing as fast as you can to get past them.”nn