Yankee Classic from January/February 2005
It is early evening, and in the basement of Saint Joseph the Worker Roman Catholic Church on Maquan Street in Hanson, Massachusetts, a small group of people sits around a table, discussing their cancers. Phyllis, a fragile-looking woman in her forties, is a newcomer to the group. Her lymphoma has returned. She is here hoping to learn something new. Next to her is a young man in a hooded sweatshirt, hands stuffed into the pockets. His black hair and dark skin hint at his Native American roots. His name is Billy Best, a name that has meaning here. Everyone faces Billy, who does not speak until he’s asked a question, and then it spills, a rush of hopeful words.
This is a scene being enacted in so many churches, halls, and living rooms around the globe. If nothing else, cancer is global and knows no boundaries. Here is no different from anywhere else. Except that here they have Billy. And because of him, they have a new kind of hope.
Phyllis has recently begun drinking Essiac tea as part of her regimen. “My family thinks I’m nuts and ooh, do they hate the smell of that stuff! I’m in the kitchen there, mixing up a batch,” and she makes the motions of stirring a big pot. “I call it my witches’ brew!”
Everyone laughs and nods. Yeah, that’s what I call it too, some mutter.
She has come to ask Billy about 714X, another esoteric remedy. It will require her to inject herself once a day in the lower abdomen, and she is apprehensive. She wants to hear from Billy how to do it.
“I never had any trouble,” he says. “Once you find the right spot, it’s easy.”
Again, everyone nods and says things like, Yeah, you’ll see, it’s really not hard.
But is it painful? She wants to know.
“I don’t know, you get used to it, I guess,” Billy says. “Sure beats the alternative!”
Billy’s mother, Sue, is the only one here who does not have or has not had cancer. On the table in front of her, Sue has a bottle of Essiac, nothing like what one expects of a tea. Packaged as it is in a green, round-shouldered bottle with an old-fashioned-looking label, the substance has the quaint appearance of a folk remedy. Alongside the Essiac are copies of newspaper articles and books about Essiac and 714X.
Neither of these substances, while legal in Canada, is approved by the Food and Drug Administration in the United States. Technically, what Sue Best is doing here this evening is illegal. However, most everyone who comes to the Bests, who operate under the umbrella of Best Enterprises, does so after trying many other treatments. Sue considers herself a conduit, a passage through which these people can pass if they need to. “A lot of people who use these alternatives have tried just about everything else. It would look pretty sad if they [the authorities] started hassling them at this point in their lives.”
As for the money, a bottle of Essiac costs about $40, and 21 days’ worth of 714X goes for $300–not much when compared with the many thousands of dollars involved in conventional cancer treatments. However, insurance companies all steer clear of paying for Essiac and 714X.
The meeting lasts an hour. What strikes a visitor is that these cancer patients all have full heads of hair. They appear to be healthy, even vigorous. On this evening Billy speaks mostly to Phyllis, though everyone else listens intently as he tells her how to do the injections, the kinds of things to eat (no red meat, no caffeine, whole grains), and the importance of vitamins. He speaks with the assurance of someone well educated in the topic. There is a reluctance to break, but at last the members rise and climb the steps out into the parking lot. Phyllis hugs Billy like a brother.
“Good luck,” he says.
“Thank you so much,” she says. “See you next week!”
A decade ago, Billy was on a different mission. On October 26, 1994, the 16-year-old cancer patient pulled his backpack out from under his bed and tucked his skateboard under his arm. His father was in the basement and his mother was not home. Quietly, he walked out the door of his family’s home in Norwell, Massachusetts, hopped onto his skateboard, and skated away.
Since July of that year, Billy had been treated for Hodgkin’s disease at the famed Dana-Farber Cancer Institute in Boston. Each week, he received chemotherapy. Each week, he became sicker, weaker. To his mind, this was not the way to be healed. Like a prisoner waiting for the right moment to break away, Billy began selling some of his belongings: a video here, a stereo there, skateboard parts. Whatever he thought his friends might want to buy, he sold. Soon he had several hundred dollars. And a plan.
Billy knew he was dying. His aunt Judy had recently died of breast cancer. He had watched her go through the same treatments, get just as sick, grow just as weak, and then she died. So he thought that if he could get to California, where he once lived with his parents, he’d be happy. He thought that if he could watch the sun set and then go to sleep, what could be better than that? That was how he pictured himself dying. So he kept this backpack under his bed. He had four pairs of shoes in there. Of course, he would take his skateboard, the heart of his life. But he thought he might end up having to skateboard across the country, which made him think he would need a lot of shoes. He kept the money hidden. Maybe he had enough for a bus ticket to California. He wasn’t sure.
That October morning, he got to the bus station in Boston and found he didn’t have enough money for California, so instead he bought a one-way ticket to Lake Charles, Louisiana. He thought it sounded like it would be a pretty place. Once on the bus, a feeling of intense peace came over him, as if nothing could touch him now. He was safe. No more treatments. No more being sick. He stashed his skateboard overhead, put on his headphones, sat back in the seat, and let the music roll.
When the bus arrived in Lake Charles, Billy saw it was a big industrial place, not what he’d expected. So for another 20 bucks, he bought a ticket to Houston. That seemed like a good place–at least it was warm. Once there, he put his stuff into a bus-station locker and took off on his board. Soon he met some kids, skating. He told them he’d fought with his parents and run away. That’s pretty much what he told everyone, even though it hurt him to say it. He loved his parents and already missed them and his sister, Jenny. But even that couldn’t change what he’d been through. He had begged not to continue the treatments, but his parents were firm: No, you have to do what the doctors say because it’s the best thing there is. Your only chance is to do what they say. So it wasn’t any use talking to them. They didn’t understand. He just wanted to be free, to skate, to die without feeling so sick.
Every day in Houston he felt stronger. The boys he met had a kind of a clubhouse in a storage locker they had broken into. They had outfitted it with some old furniture plucked from a trash bin, and, since there wasn’t any electricity, they used candles for light. They let him sleep there. During the day they skated all over Houston. At night he often went home with one or another of them and they fed him. A week went by. One night, they were over at a boy named Pat’s house. Pat’s father was in the living room, watching TV. Suddenly he shouted, “Hey, you guys, get in here. Billy’s on television!” There was Billy’s mom on the screen, crying and saying, “Billy, just call us!”
Billy ran out the door and onto the street. He put on sunglasses and put the hood up on his sweatshirt and ran. He called his mother from a pay phone and told her he was all right but that he wasn’t coming home–not ever–if it meant he had to go back to the hospital. Then he ran again. People looked for him at the storage locker because the word was out that the boys were hiding him there. He found another boy to stay with. He lay low.
At home, Billy’s parents, Sue and Bill Best, were besieged by reporters. Billy phoned from time to time, never revealing where he was. They didn’t tell him about the media circus that had pitched its tent on their lawn. They were afraid that would give Billy–such a private boy–one more reason not to come home. Finally, they promised him that if he came home, he would not have to go back to the hospital. Using money donated by a sympathetic observer, Billy flew home, almost a month after he had left on that Greyhound bus. A visit to Dana-Farber revealed that his cancer had worsened. The Bests told reporters they had promised Billy he would not have to resume chemotherapy. They said they would research alternative treatments.
People who had toughed it out on the chemo and won the battle had watched Billy’s drama unfold on television and in the newspapers. They wrote to Billy, telling him to hang in there, that it’s worth it. Others wrote about alternative treatments. Everyone who wrote maintained that the method they had tried had worked for them. For Sue and Bill Best, it was very confusing. They were also under a lot of pressure. When they told Dana-Farber they planned to seek alternatives and stop Billy’s treatments, the hospital reported them to the state’s Department of Social Services.
But the Bests knew that if they forced Billy to return to Dana-Farber he would run away again. They loved Billy, a boy they had adopted at birth. The Bests were religious and prayed for the solution to come to them. They prayed and they studied. In all the information they were sent, two possibilities kept coming up. Both originated in Canada. One of them was a tea called Essiac. The other was 714X, which promoted itself as a “nontoxic treatment for cancer and other immune deficiencies.”
While the authorities investigated the possibility of putting Billy into foster care so he could resume treatment at Dana-Farber, Billy and his father went to Canada to meet with Gaston Naessens, the biologist who developed 714X, and find out about these intriguing treatments. “I was here alone,” Sue recalls. “I was scared that I might be arrested. Nothing like that had ever happened to me in my life. Since then, we have heard of kids who were forced to take chemo or else the child would be removed [from the home].”
The publicity that surrounded Billy at the time seemed to dim the state’s desire to get involved with Billy’s case. “I think they would have looked pretty bad and they knew it,” Sue says. “But if Billy hadn’t run away, he might have had to stay on the chemo, and I wonder where he would be today. That stuff is poison–even the doctors tell you that.”
In January 1995, Billy began a daily regimen of drinking 9 ounces of Essiac tea and injecting himself with 714X. He also began eating whole grains and organic foods. No red meat. No caffeine. Until then, hot dogs and macaroni and cheese had been his daily fare. “When Billy was diagnosed, we knew nothing about alternative medicines,” Sue says. “I was never the medical kind. I wasn’t much interested in things like that.”
The Bests read everything they could find about diet and exercise and vitamins. And they continued to pray.
Within two and a half months, Billy’s cancer was gone.
714X stands for the seventh letter of the alphabet (G) and the 14th letter of the alphabet (N), which are the initials of Gaston Naessens, a French-born biologist. The “X,” the 24th letter of the alphabet, denotes Naessens’ birth year–1924. 714X is, basically, a substance derived from camphor, nitrogen, and mineral salts.
Unlike many medicinals, 714X is injected not intramuscularly or intravenously but intralymphatically–into the lymph system, via a lymph node in the groin. Instead of attacking the tumor, the substance is designed to support the immune system, which is why it is said to be effective in other immunodeficiency diseases such as AIDS.
Essiac is an herbal infusion, originally formulated by a Canadian nurse named Rene Caisse in the 1920s from a recipe passed down by an Ojibwa medicine man. The “tea” contains burdock root, sheep sorrel, slippery elm bark, and Indian rhubarb root, a brew unlike any kind of tea we are familiar with. Even those who swear by its efficacy admit it is vile smelling and difficult to swallow. But many have used it. And lived. Like Naessens, Caisse gave her substance a name that bore her likeness. Essiac is Caisse spelled backward.
Initially dismissed as quackery, both 714X and Essiac have established themselves in that murky periphery of mainstream medicine as having had some success, enough to puzzle and intrigue American doctors. Though Naessens and Caisse claimed they saw people healed, both were arrested at one time or another in connection with this “practice of medicine” for which neither was authorized.
The business of cancer treatment is fraught with potential fraud because of the position of the buyer. Anyone seeking a cure is, right out of the gate, in a somewhat desperate situation. In addition, most people seeking help have little or no background in medicine, so they may have difficulty understanding the way various treatments work. Those who consent to treatments–traditional or alternative–must take much of what happens to them on faith.
Billy’s logic was not incorrect when he concluded that his aunt Judy had been made very sick by the treatments she had been given, and then she died anyway. Anyone who submits to standard chemotherapy does so because it is the most accepted treatment available. But before undergoing treatments, cancer patients sign consent forms that point out that the treatments may have no effect on their disease and acknowledge that the treatment itself could cause illness or death.
What was exceptional about Billy’s remission was the fact he had received so much publicity. He was one patient among millions until he ran away. Once a fugitive, Billy became something of a celebrity. The question of what happened to Billy Best is a broad one that operates on many layers. His story made the newspapers again, this time with his cancer gone after using these four elusive elements–Essiac tea, 714X, healthy eating, and prayer. The news spurred many ill people to turn to the Bests for help. A girl who lived in the nearby town of Duxbury came to them, near death.
Her name is Katie Hartley and, like Billy, she had been treated at Dana-Farber. She was 8 years old at the time, and, like Billy, Katie is alive today, 17 years old and healthy. These two cases gained enough publicity that the doctors at Dana-Farber began studying 714X in late 1999. Dana-Farber then asked the National Cancer Institute (NCI) to review a number of cases of cancer patients who said they had seen success with 714X.
In 2004, NCI announced that due to insufficient data, it would not pursue research of the compound as an alternative treatment for cancer.
“That was frustrating after the long wait,” Sue Best admits. “But I still have hope. It’s the right thing. It should happen and so I feel that eventually it will happen.”
NCI’s decision was discouraging for Billy, as well, but it hasn’t altered the fact that his life changed dramatically as a result of his decision to run away that day in October, more than 10 years ago. The futures of the cancer patients who gather weekly in the basement of Saint Joseph the Worker remain tenuous, as is anyone’s who suffers from this disease. It’s just that these patients have taken a different path.
The Bests’ work promoting the forbidden Canadian substances continues, sometimes thwarted by customs and other agents. “The boxes are now ripped open at the border, and sometimes they arrive with just a few bottles left in the box. This never used to happen, but things are getting tighter now, after 9/11,” Billy says. “I’m scared now. I’m very scared.”
Today, Billy is a healthy, handsome man of 26. He moves around from job to job–bartender, ski bum, auto mechanic–but his life’s mission seems to have been preordained. Recently, I sat with him in the kitchen of his parents’ modest home. While Billy ate a cabbage leaf stuffed with tofu and rice, we talked about how the last decade had unfolded. Perhaps the most moving experience for him was not his own healing but the healing of Katie Hartley, who came to him in what were supposed to have been the last days of her life.
“She could not walk, she had a stomach tube in her, she looked like a skeleton,” Billy says. “She had a tumor the size of a grapefruit on her face that they said they could not treat. I thought she was going to die right in front of us. I was like, whoa! So I told her all about what we had done. And her mom was shoving carrot juice and beet juice down that stomach tube and all this organic stuff and putting the Essiac tea down there and giving her shots of 714X. Eight months later, she’s still doing it, and she’s starting back to school and getting better and better. And eventually, they went back to get the scans at Dana-Farber. And the tumor was gone. That was about 10 years ago. She’s still fine.”
Like so many doctors who treat patients with conventional methods, Billy has also seen those who have used 714X and later died. “714X is not a miracle,” he says. “But I think those who take it, no matter what the outcome, have a better quality of life while they’re taking it. It doesn’t work for everyone.”
Ironically, through his own struggle, Billy has found his way. He went from the desperation of those days before he ran away to trying the alternatives to becoming a mentor for many. “All these people were calling up, and I was on the phone all the time,” he says. “Everyone wanted to know what happened to me. I just kept telling people I’d be dead on a beach in California if people hadn’t seen my story and been touched by it and called to share their experiences. So I felt like I needed to pass this along, too. This is my purpose in life now.”
And Sue’s as well. “It’s very energizing,” she says. “When you are able to help someone, there’s no money that you could pay me for an experience like that. No, sir.”
People are often surprised to learn that a “house of science” such as Dana-Farber Cancer Institute offers nontraditional therapies–acupuncture, massage, meditation, and others–to its patients. To those of us at Dana-Farber’s Leonard P. Zakim Center for Integrated Therapies, however, providing such healing techniques within our walls makes perfect clinical and scientific sense.
A large body of research studies shows that supportive therapies can play a key role in reducing pain, alleviating stress, and, importantly, helping patients regain a sense of control over their lives. Americans spend an estimated $32 billion annually on nontraditional treatments; advocacy on the part of patients was the critical factor in Dana-Farber’s decision to make such therapies available.
Offering integrated therapies within our clinical setting helps us ensure that they’re administered safely and conveniently. Equally important, it gives us the opportunity to study them to learn which are useful and which are not, and why. Dana-Farber investigators are currently conducting formal clinical studies of the benefits of acupuncture, exercise, and the traditional Chinese relaxation technique qigong for different groups of cancer patients. By opening our doors to these and other techniques, we can educate patients about therapies that have proven effective.
In the not-too-distant past, patients were often reluctant to inform their doctor about nontraditional therapies they were using out of concern that the doctor would disapprove. As integrated therapies have gained acceptance within the medical community, that “code of silence” is disappearing. Patients are more likely to let their physicians know about their use of such therapies, and physicians are more likely to ask.
At Dana-Farber, we consider it our responsibility to treat the “whole patient.” It’s only natural that we make ourselves a home for any treatment able to improve patients’ emotional, as well as physical, well-being.
–David S. Rosenthal, MD, medical director, Leonard P. Zakim Center for Integrated Therapies at Dana-Farber Cancer Institute, Boston, and former president of the American Cancer Society,
On August 12, the National Cancer Institute issued this statement: “The NCI’s [Best Case Series] Program review of the pertinent medical records, radiographic films, and pathology specimens of 17 cancer patients who reportedly received 714X has been completed. At this time the judgment is that there is insufficient information to justify NCI-initiated research on 714X as an anticancer therapy. The [Office of Cancer Complementary and Alternative Medicine] is seeking authorization to solicit referral of other well-documented cases directly from U.S. cancer patients. If approved, such a solicitation will be posted on the OCCAM Web site, .”