I edited stories of longtime survivors when I was on the board of the Sarcoma Alliance. Those stories were lost when the Alliance updated its website. This is one of them. I’ve updated it and appended information from Warren’s daughter-in-law. — Suzie
Warren Bailey stays in the game. Some people might say he does more than that — last year, at age 77, he was a gold medal champion in racquetball at the Huntsman World Senior Games in St. George, Utah.
“For me, ‘staying in the game’ means the transition my life has taken since my doctor told me that I had leiomyosarcoma (LMS) in my right thigh, and that it had spread to my lungs. I was stage 4 and incurable.”
That was March 2001. He retired from Warren & Son Carpet Cleaning & Supplies, his family business in Anchorage.
“Everything — my business, family and, of course, my competitive racquetball — came to a standstill. The life that would last forever with few worries ended suddenly. My new life began with no goals or direction, only fear.
“Because LMS is so rare, Alaska hospitals were not qualified to give me the proper care and treatment. My wife and I spent a good part of the first five years at the Seattle Cancer Care Alliance and the University of Washington Medical Center. We were trying to catch up to the cancer.
“While recuperating from my first surgeries, I read a book by Lance Armstrong that had a tremendous impact on me. I decided then and there that I was going to survive, and that I needed to face this beast head on. I also wrote down a quote from Dr. Seuss: ‘You have brains in your head, you have feet in your shoes, you can steer yourself in any direction you choose. You’re on your own. And you know what you know. You are the guy who’ll decide where to go!’
“No matter what course this cancer takes, I’ll meet it head on, as I’ve done so many times before.”
A person has to be 50 or older to participate in the annual Huntsman World Senior Games. It expects to draw 13,000 athletes from around the world for 30 events this year — more than the number of participants in the last Olympics, Warren noted.
“I tried three times to play in the early 2000s, but each time I had to cancel because of my cancer returning or complications from treatments.” But he added: “The Huntsman games are so special that I have to go even if I can’t walk.”
In 2005, he played racquetball in the Alaska State Championships in Anchorage, and won in the all-ages category, “not just with old people like myself. It was my first big accomplishment since having so many surgeries on my leg. Two years later, I won again after lung surgery.”
Since his cancer diagnosis, he has endured 11 major and seven minor surgeries. He had radiation to his right leg, and the wound sometimes opens up. He protects it with a bandage when he competes. He has had three major infections that required extended hospital stays that included three months of IV antibiotics. His retina has detached six times.
Warren has still managed to win 11 gold, six silver and four bronze medals in softball and racquetball at the Huntsman games. In his first softball tournament there, he was the oldest member on his team, but ended up being named the Most Valuable Player.
Warren won a gold medal at the International Racquetball Championships in Albuquerque, NM. In the National Racquetball Doubles at Arizona State University in Tempe, he has won two gold, two silver and two bronze medals. He won gold in the National Racquetball Masters in Memphis, TN, for 65 and older and again for 70 and older.
“I’ve played in lesser events, but these were the important ones,” he said. “As I travel the country, I meet, talk and try to help survivors of sarcoma and other cancers and their caregivers. Racquetball has given me the opportunity to get the word out on sarcoma through speeches, newspapers, magazines, television and fundraisers.”
Warren organized several softball tournaments in Anchorage to raise money for sarcoma research and support for patients. He hopes to do another this year. He estimates he has helped raise at least $80,000 for sarcoma research and support. He also served on the board of the Sarcoma Alliance, which gives grants to patients to get second opinions.
An example of someone Warren has helped is Dan Higuera of Mission Viejo, CA. Dan was diagnosed with pleomorphic sarcoma, but Warren encouraged him to get a second opinion from a multidisciplinary sarcoma center. He did, and the diagnosis was changed to leiomyosarcoma.
Warren “actually came out for my surgery in 2007,” Dan said. Warren also gave him advice on radiation afterward. “He struggled with healing from radiation,” Dan said, “but I didn’t because of his enlightenment and guidance.”
The two later partnered in the 2009 Concord Classic racquetball tournament in California. “He’s such a good guy,” Dan said. “He’s like the Tiger Woods of the sport.”
“Before cancer,” Warren said, “I played racquetball for me. Now I play it to help fight cancer. Like so many other people, my only hope is to find a cure. Otherwise, I will be fighting sarcoma for the rest of my life. Helping people with cancer is, and will be, my main purpose, no matter which direction my cancer goes, good or bad, for as long as I live.
“My family has made me so proud with their love and devotion. I’ve come to realize that my grandkids look to me with respect, and handling this disease will be another lesson in life that I can teach them.”
Warren served in the Vietnam War, where he was exposed to Agent Orange. The herbicide, developed in the 1940s, has been linked to cancer, including leiomyosarcoma. Jennifer Bailey, Warren’s daughter-in-law, wrote an article about it for the Sarcoma Alliance in 2012. This is an excerpt:
Herbicides had been used in the United States; however they were heavily diluted with water or oil (The U.S. Veterans Dispatch Staff Report, 1990).
Agent Orange was a combination of two herbicides: dichlorophenoxyacetic acid and trichlorophenoxyacetic acid. It contained Dioxin, one of the deadliest substances known. The military developed Agent Orange to destroy vegetation in the thick jungles of Vietnam where the enemy might hide. It also ruined farms, forcing people into the cities.
The war began in 1959. In 1961 Agent Orange would be shipped in 55 gallon drums with an orange band, from which the name was derived. It was first sprayed in 1962 over 15,000 acres of South Vietnam after being tested in Thailand, Fort Detrick in Maryland, Eglin Air Force Base in Florida, and Camp Drum in New York.
The Agent Orange used in Vietnam was six to 25 times stronger than the manufacturer’s recommended amount. From 1962 to 1971 roughly 13 million gallons were sprayed over an estimated 5.6 million acres.
Agent Orange was one of 15 herbicides sprayed in Vietnam. More than 7 million gallons of the other “rainbow herbicides” were used, including Agent Blue, which contained arsenic; Agent White; Agent Purple; Agent Pink; and Agent Green. An Agent Orange II, called “Super Orange,” was used 1968-1969.
In February 1965 the Dow Chemical Corp. held a meeting to discuss the potential long-term hazards of exposure to Agent Orange and other herbicides (The U.S Veterans Dispatch Staff Report, 1990). Three months later, a Dow executive sent a manager at the Dow factory in Canada a memo informing him of the high toxins and the concern for skin disorders.
Chemical companies and the military kept these concerns quiet and continued to claim the herbicides were safe and needed to protect U.S. soldiers.
Warren Bailey joined the U.S. Army on Sept. 19, 1963, to experience something new and to serve his country. He deployed to Vietnam on Aug. 19, 1965. Among other duties, he sprayed Agent Orange along the roadside. The Army told Warren: “The dioxins had been tested and there was nothing to worry about.”
Ground troops lived in the mist from Agent Orange being sprayed. They slept in it, drank it in their water, ate it in their food and breathed it when it dropped from C-123 aircraft. Some troops including Warren used the empty drums as barbecue pits and storage containers for food. Empty drums were also made into showers and latrines.
After an FDA report, the White House ordered a reduction in the use of Agent Orange in Vietnam in 1969. On June 30, 1971, all U.S. defoliation operations in Vietnam ended, but U.S troops remained until the war ended on April 30, 1975.
In 1979 Congress commissioned a large-scale epidemiological study of veterans exposed to Agent Orange. In 1982 veterans filed a class-action lawsuit against the chemical companies. In 1983 the first report from the Department of Health and Human Services was released that showed a link between Agent Orange and soft tissue sarcoma. The next year Congress passed a law to compensate veterans with soft tissue sarcoma, and the class-action suit was settled. The companies were ordered to pay $180 million to the veterans.
The Vietnam Agent Orange Relief and Responsibility Campaign is one of several organizations that inform veterans and their families about Agent Orange.
Warren has also told his story here, here and here.
Suzie Siegel 