Pancreatic cancer benefit at Playhouse in memory of Lebo, DeSantie
Published 8:42 pm, Thursday, November 11, 2010
Music speaks what cannot be expressed,
Soothes the mind and gives it rest,
Heals the heart and makes it whole,
Flows from heaven to the soul.
-- Author unknown
Charlene Sabia Lebo and Suzanne Sabia DeSantie work through their tears as they talk about their husbands, Keith Lebo and Jim DeSantie, both of whom died of pancreatic cancer within a year of each other.
The sisters' deep love for their husbands and their deep losses are evident, but so is their resolve to carry on. These are two strong women.
On a warm early fall day at Charlene's house off Easton Turnpike -- which she and Keith originally built as a getaway from their everyday lives without having to go too far from their other home in the Tunxis Hill area -- the sisters' mood becomes upbeat when they discuss "A Night of Music," which they have been planning for nearly a year.
"A Night of Music" will take place on Saturday, Nov. 20, at the Westport Country Playhouse and honor the memories of Keith and Jim as well as raise money to support St. Vincent's Medical Center's Swim Across the Sound for pancreatic cancer.
The evening will feature To the Max, Christopher Robin, Shade, The Center Street Band, Daniella Cardillo and Holden Truelove. All of the artists are donating their time to this inaugural event. Radio personality Brian Smith will be the evening's emcee.
Refreshments, a cash bar and a silent auction will be available from 6 to 7 p.m.; performances will be staged from 7 to 10 p.m.; and dessert and coffee will be offered from 10 to 11 p.m. A number of area restaurants are donating food and beverages.
Tickets are $50, $75 and $100 and can be purchased through the Westport Country Playhouse box office online at www.westportplayhouse.org or by calling 203-227-4177.
Keith Lebo, who died on Aug. 25, 2009, at the age of 59, was a talented musician and songwriter of classic and hard rock who played with Shade, whose members are reuniting for the benefit performance, and The Center Street Band.
"This whole event came about because Keith was a musician and Charlene wanted to do something positive with his music," says Suzanne, who lives next door to her sister. She recalls her sister saying to her, "'Someday, I am going to have something with bands, a concert, and we are going to raise money.'"
Charlene adds that her brother-in-law Jim, who died on Aug. 3, 2010, at the age of 66, was working with them to help plan and organize the event. She knew what kind of a benefit she wanted to stage, but not where she wanted to donate the proceeds, only knowing that they had to go to an agency or association focusing on pancreatic cancer. Then by happenstance, it came to her.
Suzanne talked her into taking the tour of the long-awaited opening of the new Elizabeth Pfriem Swim Center for Cancer Care at St. Vincent's Medical Center in January of this year. She had no intention of going. "I was tired of being in medical facilities," she says, recalling the many days she spent at Yale-New Haven Hospital, where Keith was a patient. "But in the back of my mind was Jim, who was being treated at St. V's."
In the final days of Keith's life, when she saw that his health was deteriorating rapidly, Charlene had all of his medical records transferred from YNHH to St. Vincent's and specifically sent to Stuart Marcus, M.D., senior vice president and chief medical officer, chairman of the Department of Oncology and leader of the cancer center project. The Lebos had consulted Marcus in 2009 for a second opinion, but Keith opted to continue his care at Yale.
On Jan. 23, the day of the tour, Marcus was leading visitors around the new facility. "Dr. Marcus looked at me and asked, 'Is Keith still with us?' remembers Charlene, "I thought that was phenomenal because it was almost a year later [since they consulted him]. But that is what kind of doctor he is." After she told him that Keith died in August 2009, Marcus revealed that he, coincidentally, had all of Keith's medical records on his desk. "He had just received them," says Charlene. They went over Keith's medical records and treatment, she says; she was confident Keith was given good care.
Throughout the tour, Charlene and the doctor had side conversations about Keith. By the end of the tour, Charlene, Suzanne and Marcus were talking more seriously about the fundraiser. Marcus then introduced them to Michael Bisceglia, vice president of the St. Vincent's Foundation who also oversees the fundraising events for the Swim Across the Sound.
"Everybody was in the right places at the right time," she says. "I did it because of the hospital and because of [Marcus]," she says of choosing St. Vincent's as the recipient.
"I think this is where we need the money the most -- right now," says Charlene. "Everybody is raising money for breast cancer and colon cancer, but with pancreatic cancer, we need to get the message out there, we need to find something like they did for breast cancer. Twenty-five years ago, you didn't think you had a shot [with breast cancer]. Now, you do have a shot. Well, pancreatic cancer, right now you don't have a shot."
Marcus, who is a specialist in gastrointestinal cancer surgery, says pancreatic cancer is an "aggressive tumor" that spreads early. Surgery is the most widely used method of treatment for cure. The entire pancreas, which helps produces insulin to control sugar and secretes enzymes to the intestines to digest foods, can be removed but then diabetes becomes a threat, he says. Doctors primarily remove the tumor with a portion of the pancreas, he adds.
There are no definitive symptoms of pancreatic cancer, but there are some warnings, particularly for populations at risk, such as those with chronic pancreatitis, he says. The sudden onset of diabetes in an adult is a possible early warning sign of pancreatic cancer. Marcus noted that 42,000 cases of pancreatic cancer are diagnosed each year in the United States. Most patients live six to nine months after diagnosis, and with proper treatment, some 40 percent of patients can live up to five years. According to their wives, Jim DeSantie lived with pancreatic cancer for two and a half years; Keith survived seven months after diagnosis.
Marcus, who arrived at St. Vincent's in 2006, envisions a "liver and pancreatic disease center" within the new cancer facility. Through the newly opened Pfriem center, cancer patients are provided with a multi-disciplinary approach to treatment, he says, from surgery to radiology to nursing to pastoral care, among others, following nationally established guidelines. The goal, he says, is to treat the "mind, body and spirit" of patients.
That same approach would be employed in a dedicated liver and pancreatic disease unit. He notes that St. Vincent's treats about 50 pancreatic cancer patients a year -- "that's about four to five a month and they are increasing." The center would allow the liver and pancreas specialists to dedicate their resources to patients with these diseases, not just with cancer. One of the highlights of the program would be "patient care navigators," who are specialized nurses who guide patients to "make sure they are pointed in the right direction" and help with financial and insurance issues, support and access to other services.
"Patients will benefit from a center of excellence to ensure they are given the correct treatment the first time around," he says.
Marcus, who will be addressing the audience at "A Night of Music," believes that "the goal is to give patients the best treatment available to them; treatment that may not only prolong their life, but will improve their quality of life and maintain dignity."
Quality of life in the face of adversity -- and before diagnosis -- was certainly the focus for Keith Lebo and Jim DeSantie, say their wives.
Suzanne says both men "loved life, loved to have a good time, loved to have fun." The DeSanties were together for 19 years. She says her husband was accustomed to taking chances. At the age of 16, he forged his mother's signature on enlistment papers so he could join the U.S. Marine Corps. "On the first day of the Marine Corps, they asked him how old he was. He said, '17.' They asked, 'when did you turn 17?' He said, 'today.' They said, 'why didn't you join the Boy Scouts?' He loved telling that story," Suzanne recounts, laughing.
In his four years of service during the Vietnam War, Jim survived three helicopter crashes. When he was discharged, he became trained as a HVAC specialist and was one of the top mechanics in the area, she says. He never worked for the one-time family business, DeSantie Tire Co., even though he maintained connections there all his life.
He loved to play golf. In the spring of this year, he played three times a week, and he even was on the links the week before he died. Jim was the joke teller and entertainer. "He was that guy who everybody waited for to tell a joke " He was known for his jokes. They got old on me after a while," says Suzanne.
"Jim was a lot of fun," adds Charlene. "Whatever happened, he always tried to make a joke, always tried to keep your spirits up."
Both men loved their homes and their families, doing yard work and gardening and they liked to cook. "Jim was very proud of being Italian " and he liked to remind us all that we weren't," laughs Suzanne.
When Keith was upstairs practicing on the guitar, going over and over the same song, Jim usually was sitting outside in the lawn chair listening, say the women.
As for Charlene and Keith, who were married for 30 years, they first met when he was a young musician, but she feared getting involved with someone who was out at gigs all the time and who had adoring, female fans surrounding him. Two years later, they met again and dated seriously. She came to realize that he was a shy, quiet guy who was embarrassed by all the attention. "He would say to me, 'They don't really know me. They want to know about the guitar player. For me, it is about you and I.' I never had any doubts."
Shortly after they married, Keith gave up his music and didn't pick up the guitar again for 20 years. He told Charlene that the marriage wouldn't work if he was performing every night. "'The marriage is No. 1,' he said, 'then comes the music,'" Charlene remembers him saying. Keith, who was a design and electrical engineer, returned to playing after his wife was established in business and politics; she served on the Representative Town Meeting for several years and left public service when Keith became ill.
"We are very fortunate to have had two really great guys," says Charlene. "And then why does this happen? They are gone. They are too young. Keith had a lot of work to do. Why did God take him? I don't know. But I am sure there is a reason. And I am sure I am going to be in a lot of trouble when I get there because I question Him a lot " you just have to move forward."
Part of moving forward is keeping Keith's music alive. For Dave Brinckerhoff of Shade, that, too, is a goal. In 1970, Keith auditioned to be the band's guitar player. The band had had other guitarists who were good, but "it took us 30 seconds to say we wanted him."
"We said this was the guy we want. He looked the part. Everything about him worked for us. He was an amazing musician," says Brinckerhoff, who notes that Keith's death was like "losing a brother."
The band will be reuniting for the first time in 38 years. They had talked about getting back together before, but there was "no compelling reason," says Brinckerhoff, the group's lead singer. Once he heard from Charlene about the benefit concert, he called every band member and without hesitation they agreed to play. "Everyone is pulling together for this " I wanted to do something for him but never expected something this big," he says. The band will be performing Keith's "I Think I'm in Love."
Similarly, The Center Street Band will be playing Keith's "The Path of Least Resistance," says John Young, founding member, keyboardist and vocalist. Keith joined the band in 2005 and "spent four creative and game changing years with The Center Street Band," according to its website.
Young echoes the thought about Keith's ability. "But one of the things I learned about him was not only was he a great guitar player, but he was a songwriter, producer and engineer." Young also had an interest in songwriting and recording and was given the opportunity to learn from Keith. "I always thought he should have produced his own CD. But he was humble and reluctant. He always thought his material could be better."
With Charlene's participation, Young is co-producing Keith's first solo CD, which is simply titled "Keith Lebo" and contains his original work. The CD will be sold at the benefit concert and all proceeds will go to Swim Across the Sound. When Charlene told him about the fundraiser, Young says he felt that was a "perfect time to put it together."
"It sounds great," he says of the CD. "It has some meaningful songs" from the portfolio of 68 that Keith wrote in his lifetime.
When Charlene and Suzanne think about the planning of the concert and the effort put into by friends and strangers alike, they are overwhelmed. The generosity, says Suzanne, is "unbelievable. Everyone is pouring their hearts into everything."