Story by Rob Johnson
Photos & video by Jeanna Duerscherl
Sunday, November 30, 2008
At 20, Brooke Smith had the life she wanted: beauty, boyfriends, a blossoming career styling hair and a bruising hobby as a star on her women's roller derby team.
But in a May skating practice session of the Star City Roller Girls, Brooke took a spill. At first she thought little of the pain in her lower back. A competitor known for elbowing opponents out of her way, and who went by the nickname "Grrr," Brooke felt obliged to tough it out.
In July the ache was worse. Lumps in her back she thought were bruises from the fall remained. And she noticed a new small growth above her left breast, unrelated to the tumble. She started seeing a series of doctors in August.
"When they said it's cancer, I kind of went into shock. Then to find out that it's a rare, incurable kind — my life came to a screeching halt," said Brooke, a Virginia Beach native who grew up in Roanoke. Her only previous trip to a hospital was for tonsillitis. Tests in September showed tumors in her back, one breast, her lungs and pelvis.
Imminent death as a medical prognosis is the stuff of soap operas and syrupy novels. In real-life, doctors grimly estimate how many months or years patients have left. Cancer victims typically battle back through torturous chemotherapy and radiation treatments. Meanwhile, they get their affairs in order and make the most of their remaining time.
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But Brooke's death sentence is more complicated. Oncologists said her cancer, a highly unusual kind called alveolar soft part sarcoma, may not take its final toll for 10 to 15 years.
"Where does this leave my heart? Broken," Brooke said. "Where does this leave me with a 10- to 15-year life expectancy? Should I ever get married? Even think about children? Should I stop working and just enjoy life?"
For answers, Brooke has turned to an authority she largely ignored as a teenager. "The real question I've got to ask is to God: What do you want me to do?"
Brooke's spiritual search is resonating with her family, friends and even her doctors.
Dr. Robert Williams, a Salem surgeon who specializes in breast cancer and has removed the tumors on Brooke's breast and back, is a member of her church. Her malady is also proving to be a test of Williams' faith.
"I do ask God, ' Why? Why does Brooke have cancer?' And I get mad at him," said Williams. "It pisses me off."
A holistic approach
During his two-decade career, Williams, 52, has known patients and their loved ones who asked God for miracles, only to be disappointed. "Too many times Christians will oversimplify. Some might say for God to be God, Brooke would have to be healed."
Williams said he doesn't believe God should be expected to heal on demand. He agrees with Brooke's approach to prayer, he said: "Her attitude is, 'I'm asking God to help me, but if I don't get well, he's still with me.' "
Not that faith can't help lift the limitations of medicine, he said. "I believe in a holistic approach, a combination of spiritual life and science."
In choosing surgery as his specialty, Williams turned away from his earlier career plans to become a psychiatrist or family doctor. "In surgery, you get to fix things. In cancer surgery, you get to take out the cancer." But in Brooke's case, the surgeon's knife can't keep pace with new tumors — already numbering in the hundreds in her lungs.
Williams examined Brooke for the first time on Aug. 26. His specialty is breast cancer, and because less than 1 percent of such cases occur in women so young, he doubted the lump on her chest was malignant. He said he told her that the odds were very much in her favor.
He sent Brooke to a radiologist, and a week later, to his dismay, the test results showed cancer. At that point, perhaps the best news would have been that the tumor was indeed breast cancer. That's because it's treatable if detected early and has a high survival rate relative to alveolar soft part sarcoma, which can be slowed but not stopped by surgery, chemotherapy or radiation.
When the pathology report showed that Brooke suffers from ASPS, Williams had to reverse his earlier optimism. He told her, "We don't know of anything that will help."
'Can't pray it away'
The disease arises mainly in children and young adults, according to the American Cancer Society. A report by the group describes ASPS as a series of slow-growing tumors that "can easily" spread through the bloodstream, often ultimately to the brain for its conclusive attack.
Little research has been done into ASPS because it's so rare: only about 100 cases a year in the U.S. That rarity discourages pharmaceutical companies from researching drugs to fight the disease. Not only is there a limited market for such medicine, but meaningful clinical trials are difficult with such a small pool of patients.
Brooke consulted a Salem oncologist, Dr. William Fintel, 51, who has practiced in the Roanoke Valley since 1988. He's known not only as a leading cancer doctor hereabouts but also as the co-author of several books that offer religious direction for the disease's victims, including "Cancer: A Medical and Spiritual Guide for Patients and Their Families."
Despite Fintel's adept background, Brooke's malignancy surprised him: "She's the first adult I've seen with it."
With so little ASPS experience, Fintel sent Brooke to specialists at the Wake Forest University Comprehensive Cancer Center in Winston-Salem, N.C. After they examined Brooke and her test results, they recommended that she try to find researchers who are conducting or planning clinical trials for her disease.
Fintel said he empathized with Brooke's predicament. Only a year ago, he found his life suddenly threatened by a rare tumor. The doctor, too, turned to God for answers.
Until his tumor was detected, Fintel said, "I felt that I had a contract with God: 'I'll take care of cancer patients and you leave me and my family alone.' I signed the contract, but God didn't."
Fintel's tumor, while potentially fatal, turned out to be non-malignant, and he underwent surgery that appears to have removed the threat.
While faith may offer consolation, Fintel is pragmatic about battling cancer. "You can't pray it away," he said.
On Brooke's behalf, Fintel checked around the nation and found that the Dana-Farber Cancer Institute in Boston is interviewing ASPS sufferers to test a drug called Trabectedin, a product of Johnson & Johnson Pharmaceutical Research and Development .
Although Brooke has been tentatively accepted for the tests, which are funded by a federal grant, she still hasn't signed up because of the travel expenses associated with numerous overnight intravenous treatments. The therapy is usually repeated every three weeks for an unspecified period, until the effects — if any — can be assessed.
"You're talking about thousands of dollars in travel expenses that I don't have and our insurance doesn't cover," Brooke said.
Her mother, Becky Smith, who works as music director at Church of the Holy Spirit, carries Brooke on her Anthem Blue Cross and Blue Shield coverage through her employer. While that policy is paying about 80 percent of her medical bills so far, like most coverage it doesn't extend to costs related to clinical trials, including transportation.
But there are additional funds being raised for Brooke by her fellow students at St. Pierre Day Spa Salon and Academy in Salem, and co-workers at Montano's International Gourmet restaurant in Southwest Roanoke County, where she's waitressing some evenings. By auctioning such services as free hair styling, her supporters have raised about $5,000.
Help has also come from the Smiths' church, which in early October gave Becky a six-week paid leave of absence. Her pastor, the Rev. Quigg Lawrence, announced the leave arrangement at a Sunday morning service. "Be a mother," he said gently. "We pray you will find spiritual replenishment."
Like Fintel, Lawrence relates to Brooke's illness on a personal basis.
"Prognosis is an inexact science, so we shouldn't be slave to it," he said. "Seven months ago my father was told he had a tumor, and two to three months to live. He's not taking chemo or radiation, and his tumor has shrunk 19 percent."
'God was my enemy'
There is a tragic irony in Brooke's story. Today she is full of faith and of life and determined to hang onto both. But not too many years ago, before she fell ill, she thought God had abandoned her. More than once she flirted with ending her life.
Brooke grew up in a devout home, and she attended Roanoke Adventist Preparatory School until the ninth grade, after which Becky supervised home schooling via online courses.
Becky also decided on home school in higher grades for her other children, Ashley, 22, and Mitchell, 17. Her main reason, she said, was to ensure the emphasis of Christian values in their daily education routine.
Brooke's father, Barry, a self-employed house painter, attended church with the family. Although he ceded religious leadership to Becky, his house rules were strict. Brooke wasn't allowed to cross quiet Collingwood Street in front of the Smiths' brick house in Northeast Roanoke until she was 10.
"Even at 13, there was a stop sign a block down the street I couldn't go past," she recalled. Her first kiss came at a Seventh-day Adventist Church Bible camp when she was 14.
But at 16, Brooke rebelled at the Adventists' strict doctrine and her parents' discipline.
"I thought the dumbest people were cool. I thought smoking pot and drinking made me an independent adult. Sex was this new cool toy I could play with, and no consequences would ever come from it.
"I disobeyed everything I had ever learned and fought with my parents every day, it seemed. Nothing was good," Brooke recalled.
"I hated who I had become and thought my life was over," she said.
Brooke's solution was attempted suicide. At 17, she twice swiped prescription pills from friends and gobbled them by the handfuls. But the drugs didn't prove deadly, nor did she even require medical attention. "Nothing happened," she said.
By the fall of 2004, Brooke said she was "getting back on track," breaking from friends she felt were a bad influence and "loving my parents again." But in October of that year her father suffered a heart attack and died within hours.
Brooke felt overwhelming guilt over her dad's death because they had scheduled a night of hanging out together that she postponed for a date. He was gone before they could speak again.
Again, Brooke abandoned her faith. "From then on God was my enemy and I didn't trust what God wanted," she said.
Guilt over her dad's death consumed her. She developed an obsession with sudden death. She feared being alone in the dark. For more than a year she equipped her bedroom with up to 10 night lights. "I began to think I could see and feel demons," she said.
Despite her fears, Brooke tried to focus on the future, and in 2005 she enrolled at Virginia Western Community College to study nursing. But in 2007 she decided on another direction and signed up at the St. Pierre hair styling school. After 1,500 hours of instruction and on-the-job training, she graduated from the $10,000 course on Nov. 14.
"She has great potential in hair styling," said Cynthia St. Pierre, the owner. "She does great haircuts and coloring."
Rough and tumble
In 2006, two years before her diagnosis, much of Brooke's personal life began to center upon a new pastime: skating on a women's roller derby team based at the Star City Skate Center in Northeast Roanoke. She had a long fondness for athletics, having played soccer, basketball and softball on Adventist Prep's middle school teams and in recreational leagues.
Brooke heard about roller derby from a co-worker while waiting tables at Logan's Roadhouse restaurant after styling classes. In roller derby races, which are called "bouts" because opponents so relish bashing each other, Brooke found not only enjoyable exercise but an outlet for her personal frustrations.
Brooke's confrontational racing style made her a crowd favorite. She was so popular that fans booed the referees who sent her to the penalty box. She even appears on a recruiting poster for her team, the Star City Roller Girls, which asks: "Are you aggressive? Do you have medical insurance?"
Teammate Nadean Carson said of Brooke: "She's fierce and violent — everything a roller derby girl should be. She hasn't got an in-between gear — only skating and knocking you out of the rink."
Even some of Brooke's roller-derby rivals admire her aggressive approach to the sport.
Shilo "Speed Junkie" Atkinson, with the New River Valley Roller Girls, said, "I had a bruised rib for two months from our first bout against Brooke. I got a nice elbow to the ribs. It's not legal, but it wasn't seen by the refs."
But since early September, recovering from the removal of the back and breast tumors, Brooke hasn't skated. The tumor in her pelvis has grown steadily more painful during November.
Atkinson, nursing director at Wheatland Hills Retirement Center in Radford, wiped away tears when talking about Brooke's health battle. She vowed to be tough when her adversary returns to the rink. "I won't be holding back. She wouldn't want that."
Brooke is not looking for any sympathy. Now 21, and with 10 to 15 years left, she said the fatal prognosis has helped conquer her demons and re-establish her faith in God.
Speaking at a memorial church service for her father in September, she told a gathering of 100 or so:
"Even though I have a time limit, everyone does. I was just lucky enough to find mine out so I can act now and stop wasting life like it's always going to be there."
