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In June 1991, Jay Feinberg was a year out of college, working as a foreign exchange analyst in New York. He was 22, had graduated magna cum laude from Dickinson College in Pennsylvania and was planning to eventually attend law school. Those were good times.
And then came the abdominal pains. They were with him for a few months. Jay didn't think much about them; he was young, after all. But when the high fever came one afternoon and he couldn't walk, Jay's folks took him to the family doctor in West Orange, N.J.
By midnight, Jay Feinberg knew he had leukemia. It was chronic myelogenous leukemia, uncommon for someone his age. He was told he had about three-and-a-half years to live. Maybe less.
A week later, Jay was in another doctor's office, this one a specialist in New York. His family had been shooed out of the room. It was just the two of them.
"You have a fatal disease," the doctor said. "We know you won't survive this. But I want to reassure you that there are a lot of drugs we can give, to make you feel comfortable. This won't be a painful death."
Imagine hearing that.
Jay cried that day. He says it was the only day he lost hope.
But he's still alive. He's 32, and lives in Delray Beach. And he has dedicated his life to helping others suffering from the same disease he had.
That's right. Had.
It's been a remarkable nine years for Jay Feinberg. He recently recollected it, in his quiet Delray office. The only sound in the place other than his voice is the whir of five computers near his desk. In those machines is some of the lifesaving information he and countless volunteers have compiled over the past decade.
But you can't talk about the present without knowing about the past. You can't appreciate hope until you feel hopelessness. Here is Jay's story.
When Jay Feinberg was diagnosed with chronic myelogenous leukemia, he was told the only way to survive was to have a bone marrow transplant.
The doctor suggested Jay should have his immediate family members tested to see if their stem cells -- the master cells that "grow" bone marrow -- were compatible with his. He also suggested conducting a search with national and international bone marrow registries to see if there was a compatible donor out there who was unrelated to Jay. That's a lot harder than it sounds. Here's why.
At its simplest, bone marrow transplants hinge on something called Human Leukocyte Antigen tissue types. HLA is essentially your genetic human fingerprint. Much like "whole" organ transplants (think heart transplants) this genetic compatibility is critical. And unless a patient has a twin sibling, there is no 100 percent compatibility with any other human being.
Ethno-geographic and genetic similarities are critical in these transplants. Jay's family is Ashkenazi, of Eastern-European Jewish descent. In 1991, Ashkenazim were severely underrepresented in the worldwide bone marrow registries. When Jay was diagnosed, less than 1 million people were entered into the worldwide marrow donor databases. Fewer than 5 percent were Ashkenazi.
None of them were compatible with Jay. No members of his immediate family were compatible, either. Ironically, Jay's two older brothers -- Steven and Eddie -- had HLA tissue types that were compatible with each other, but not with the brother who needed it. After initial immediate family testing and database searches, the family discovered there was no one in the worldwide registries who was a compatible donor for Jay.
During that first month, Jay began receiving chemotherapy treatment to retard the growth of the leukemia. He and his family also visited several bone marrow transplant centers across the country, so they could be ready when a donor was found.
By July 1991, Jay had selected The Fred Hutchinson Cancer Research Center in Seattle as his transplant center. Named for a baseball player (best known for his stint with the Detroit Tigers in the late 1940s) who died of lung cancer, "The Hutch" is recognized as a trailblazer in the field of marrow transplants. That impressed Jay. What impressed him more were the doctors there: They treated him like a person, not a number.
The Hutch's doctors were impressed, too. Jay expressed an interest in learning all he could about his leukemia and about bone marrow transplants. John Hansen, former director of the Clinical Division at The Hutch, remembers meeting the Feinbergs. He was one of the first doctors Jay spoke to.
"Jay and his family approached this crisis, this situation, with full intensity," says Hansen, who is now a medical professor. "He was dedicated from the beginning to learn everything he could. . . . He wanted to be on top of this."
That would come in handy, especially after Hansen insisted the key to Jay's survival was to find potential donors from a similar Ashkenazi background. Test extended family, Hansen said. Hit the books and do genealogical studies -- find family you never knew you had. Run bone marrow drives. Get complete strangers to test for HLA compatibility.
Again, harder than it sounds. But Jay smiles, here in his office, when he tells what happened next.
"That's exactly what we did," he says. "We didn't know what would come of it."
There is no simple way to explain what happened over the next three-and-a-half years. There's no way to convey the virtual unbelievability of the following statistic.
From 1991 to December '94, about 55,000 people from all over the world were tested at marrow drives organized by Jay, his family, friends and volunteers.
Fifty-five thousand.
When Jay and his family flew back to New Jersey in July 1991, they made a plan. It was a two-pronged attack: They were going to research the family, to see where in Eastern Europe they came from; and they were also going to start raising money for bone marrow drives in New Jersey and California, where other family members lived.
His parents, Jack (now a retired accountant, 72 years old) and Arlene (a retired clothing store owner, 68), were going to save their son, no matter the cost. They spent -- as Jay puts it -- "a ton" of money to pay for those first few drives. "And they went to great lengths to spread the word," Jay says. "They talked to friends, businesses, former clients about donating money."
The search evolved into something bigger. Strangers heard about Jay, and sent donations to cover costs for tests and travel. As local support began to grow, Jay and his family decided to go all over the country -- and overseas, if possible -- and test everyone they could. Three drives became 13. Then 30.
"We were told not to get our hopes up," Jay says. "The odds of finding a compatible donor are slim. It was explained to us that looking for a donor is like looking for a needle in a haystack. It was pretty overwhelming."
And the drives quickly became more than a crusade to find Jay's donor. While he literally became the poster boy for the "Friends of Jay Feinberg" organization he and his family founded, Jay knew these HLA compatibility tests (taken from a small sample of blood) would be entered into national and international marrow databases. If Jay couldn't find his donor, he knew that other patients could.
From '91 to '94, the organization sponsored more than 200 other bone marrow drives. Volunteers for Friends of Jay (many times including Jay and some of his family members) traveled to Russia, Australia and South Africa to run drives. Tests were conducted in major cities in America and Canada.
Word spread. Dozens of newspaper stories were written about him. Thousands of flyers were printed, encouraging folks to participate in local drives. In 1993, Jay appeared on the Sally Jesse Raphael show. Friends of Jay had 17 phone lines running in its donated office space in New Jersey, just to keep up with calls from that TV appearance. Volunteers fielded 10,000 calls during the first 48 hours. Forty-five thousand callers got busy signals.
And then the awards started rolling in. From other bone marrow donor organizations. From humanitarian organizations. From cities. In fact, Dec. 4, 1992 was "Jay Feinberg Day" in Brooklyn. Jay was a little embarrassed by that . . . but it helped publicize the cause.
"Remember, these donors went into a database that helped patients worldwide," he says. "It said Friends of Jay, but it wasn't a campaign for one person. It was a campaign for many people. . . . But to say, My name is Jay Feinberg, I'm 22 years old, and dying of leukemia. Will you help save my life with a simple blood test?' was a very powerful thing."
On many levels. In the course of three years, Jay's life was turned topsy-turvy.Before his diagnosis, he collected cartoon animation cels, designed stained glass windows, loved reading and studying art history. Now he and his family would arrive at the office early in the morning and work nonstop into the night. They oversaw everything: Phone calls, bone marrow drives, donations, education. Stop for a sandwich, if they were lucky. Eat dinner at the office. Life had changed for the Feinbergs.
But in a way, Friends of Jay Feinberg became a worldwide phenomenon. More than 100 other patients found bone marrow donors, through the results provided by "Jay's" drives.
But by 1995, Jay still hadn't found a donor. It really was like finding a needle in a haystack.
And then things got worse.
Jay's leukemia began to accelerate.
By May 1995, the chemo wasn't doing its job anymore. Jay's white blood cell count was going through the roof. His spleen was enlarging. The disease was spreading.
The 26-year-old was running out of time. By the doctors' original estimate, he should have been dead already.
In January, Friends of Jay had hosted a donor drive in Israel. They found a donor who was -- as Jay says -- "significantly mismatched," but might be a successful transplant. A decision had to be made. Since this woman in Israel (actually a New Yorker attending college there) was the only option, Jay decided to go for it.
"It was as close as it was going to get," he says.
The folks at The Hutch were informed, and they prepared to use the donor, who would be "harvested" in New York. Jay was due to fly out to Seattle to get the transplant in July.
But a newfound friend based in Chicago called up the family. The friend, Benji Merzel, wanted to run one more drive -- this one in Milwaukee. (Benji is a story within a story: His friend was saved by a donor from one of Jay's drives. He became interested in the cause, and helped Friends of Jay run local drives.)
Just one more, he said.
Jay and the family said no. They had found a donor. It was a done deal. The compatibility could be much better, but then again, it could be worse. Besides, the organization hadn't done any fund-raising for this drive.
But Benji and his pal Amir Guttman insisted they could find the money and the support. Milwaukee had never had a bone marrow drive before, they said. And hopefully they'd find Jay's donor, too.
"We really wanted to go through with it," says Benji, who is now 25 and studying in Toronto to be a chiropractor. "And when I heard that (Jay's) donor was a major mismatch,' that was a red flag. I still hoped we could find someone more compatible."
The Feinbergs relented. Benji and Amir ran the drive on May 14. Benji had several friends there who volunteered their time doing paperwork and such -- Becky Faibisoff, 16, was one of them. About 125 people were tested during the drive. She wasn't.
"They were closing down, and Becky was packing up all the medical supplies and she said, I'm afraid of needles, but I want to do this,' " Jay says. "They took out the supplies, had the blood drawn."
Becky Faibisoff was the last person . . . of more than 55,000 . . . to be tested for HLA compatibility with Jay Feinberg.
Just like the other 225 drives, the blood samples were taken to a special lab and processed. The results were sent to the Feinberg family. The last bar code -- Becky's -- was a very close match to Jay. Much closer than the woman in Israel. Her family's genetic and geographic background, also Ashkenazi, was the key.
It was clear she was the best candidate to donate.
Becky Faibisoff volunteered at a drive that shouldn't have happened. She took the test as an afterthought. In fact, if Benji's friend hadn't been saved by one of Jay's drives, Benji wouldn't have been involved at all. He wouldn't have been insistent about hosting one more drive. And Becky wouldn't have come to volunteer, to donate.
"We were shocked," Jay says, grinning.
"I never thought it would be me, not in a million years," admits Becky, now 21 and studying to be a teacher in Chicago. "It's weird, though. I realized that I was vital to someone else's existence. My life mattered so much to someone I had never met. I realized how important we all are, through this."
Needless to say, it shook things up.
Another quick medical lesson:
Bone marrow donation is a process shrouded in fear and misconception. Some folks think surgeons crack open the bone, suck out the marrow, and chuck it into a patient. Others have confused it with "whole" organ donation, and believe an actual bone is taken from one body and placed in another.
Actually, bone marrow is a human organ that replenishes itself. You can donate it many times.
The most-common process of marrow extraction is called aspiration. After a local anesthetic is applied, a needle is inserted into the lower back, into the hip bone. Quantities of bone marrow containing the "marrow-growing" stem cells are extracted. A person can leave the hospital the same day he or she donates. Aside from some pain (the lower back feels bruised for a few days), that's it. The body replenishes the marrow in about six weeks.
In 1995, that's the process Becky Faibisoff underwent in a Chicago hospital. The marrow was rushed to Seattle, where Jay and the doctors were waiting.
By that time, Jay had spent a week at The Hutch, in a preparation phase called "conditioning." It's rough. A catheter was installed into his chest, a series of tubes that would be used for transfusions, chemo, nutrition and the actual transplant. Also, the leukemia -- and his immune system -- was destroyed by "total body irradiation," a process where the entire body is bombarded by cobalt sources.
The side-effects of the radiation are incredibly painful and risky. Short-term: The mucous membranes in the throat and mouth are destroyed, leaving the flesh raw and exposed. (Patients need IV morphine to cope with the pain.) Diarrhea. Platelet, white- and red blood cell counts drop to zero, leaving the body totally unprotected against infection. Long-term effects include increased chance of developing cancers and cataracts, and sterility.
Jay Feinberg's bone marrow transplant took place on July 28, 1995. At around 11 p.m., Hutch doctors hooked up the bag of Becky's marrow to Jay's chest catheter for the infusion. It was over by around 2 a.m.
Jay was awake during the process. He was too excited to sleep.
Here's the funny thing about stem cells: While they're essentially dumped into a vein during a transplant, they "know" to migrate to the hollow cavities inside a person's bone. Doctors don't know how they do it. It's just generally accepted that stem cells are clever cells.
The rest of the transplant process is waiting -- waiting for the new stem cells to engraft, reproduce and replenish the bone marrow. Jay spent the next two-and-a-half weeks in a sterile plastic bubble room, waiting to see a change in his cell count.
Finally, he did.
"That day," Jay says, "was unbelievable. There was a lot of shouting going on. We were thrilled."
Not as thrilling as the day he and Becky Faibisoff finally met. It was a year after Jay's transplant. He'd gone through some serious complications to the treatment (as almost all bone marrow recipients do). But he was alive. Thanks to her, he now had a chance at a "normal" life expectancy.
"I was so nervous about meeting Jay," Becky says. "But when we met, there was such a comfortable feeling between us, this bond. There was a love there, like a brother and a sister. It was overwhelming."
Jay smiles. "That day was very emotional," he says.
The story could end there. It doesn't.
"I have to believe there's a reason why I went through all of this," Jay says. "I think that reason was that the drives done for me found donors for well over 100 people. They were given a second chance at life, thanks to the volunteers that tried to save my life. If there was a reason to go through it, that's it, I think."
And it made Jay and his family ask a question after his transplant: How could we stop doing this? They decided to keep running the organization they founded in '91.
The Feinbergs changed its name to Gift of Life Bone Marrow Foundation, but the mission remained the same: To be a nonprofit, public-supported organization that hosts bone marrow recruitment drives. While Gift of Life's recruitment strategy includes increasing overall Jewish ethnic representation within the international donor registries, it accepts donations and tests people from all ethnic backgrounds.
The organization has grown into so much more, too. About two-and-a-half years ago (around the same time Jay moved to South Florida to be with his "snowbird" parents), Gift of Life officially became one of only three bone marrow registries in the United States. When a person is tested at a Gift of Life drive, the results are entered into the organization's computer database, that whirring wall of information in Jay's Delray office. More than 41,000 entries -- the number of folks the organization has tested since '95 -- are in that database.
In many ways, Gift of Life has become Jay Feinberg's life. He's usually in the office from 8 a.m. to at least 8 p.m., working the phones or processing marrow compatibility searches. When he's not doing that, Jay's writing grant proposals and focusing on fund-raising. And then there's the international role Gift of Life now has, as an official registry. He has to make time to consider that, too.
Eight to eight, six days a week. It leaves little time for his other interests: Star Trek, movies, art history, travel. But Jay can't see it any other way right now. To his knowledge, he's the only bone marrow recipient who is also a search coordinator at a donor registry. He remembers being on the "patient" side of the search. He doesn't want other people to experience that.
"If I get a search request at 4:59, I'm not going to leave. I don't think I could sleep, knowing that someone was waiting for that search," he says. "My friends here say, You should have a life', that I should go home at 5 o'clock, go out on the weekends. No offense to my friends, but they don't understand. They've never walked in the patient's shoes. . . . Personally, I can't go home wondering, What is that patient thinking?' "
So Jay stays and works the hours, on a volunteer basis. His family helps him make ends meet. Jay receives no pay from the donations that support Gift of Life and its services.
And it provides many services. Transplant centers around the world access Gift of Life's database to see if it has a compatible donor for the center's patient. If it does, Gift of Life then oversees as much of the donation process as possible: The pre-donation physical exam, the bone marrow extraction, and delivery to the transplant center. All the costs are covered by donations and, eventually, the patient's insurance company.
But that's not all Gift of Life does.
"God willing, if all goes well, one year after the transplant, we'll facilitate a meeting between the donor and the recipient," Jay says. "It's a very exciting process."
And an expensive one. While Gift of Life is typically reimbursed for its costs by insurance companies, it needs donations from the public to stay afloat. That's hard to do. Jay also wants to create a salaried position for a donor search coordinator, the job that consumes much of his day. But that costs money, too.
It's the plight of the nonprofit organization: A lot of worthy causes, and not many people willing to donate money. "Anyone in nonprofit will tell you that the hardest thing about it is the fund-raising," Jay says.
That, and finding a minute to relax. When he can, Jay travels around the country and speaks to groups about his life, and about bone marrow donation. The organization has been recognized by worldwide humanitarian groups, like Hadassah International. And most of Gift of Life's "muscle" is still unpaid volunteers, most of whom are based in the New York/New Jersey area.
His parents still volunteer their time, even in the summer when they go back to Jersey. Jack helps balance the books. Arlene is a counselor for potential donors. Brother Eddie enjoys being a pro bono "bone marrow courier," traveling with the donated marrow to transplant centers. And then there are volunteers who are like family, like Rochelle Sislen of New Jersey. She's been volunteering since 1991.
It's an incredible story, all of it. And how's this for a happy ending? Jay recently returned from a three-day trip to Seattle. He participated in a reunion at The Hutch -- a celebration for folks who have survived five years after their bone marrow transplant.
"Five years is a kind of watermark," Jay explains. "You're looking at a point where your chances of disease-free survival are much greater."
And that's what Jay Feinberg's story is all about. Survival. And hope.
But not heroics. Jay doesn't want you to think he's a hero. "When you talk about heroes, this is who you should be talking about," he says, and points to the photograph of Becky on his desk. "Without her, without people like her, I wouldn't be here. The volunteers, the people who gave their time to help me, they're the heroes. Not me."
Perhaps. But even Jay admits the last nine years have been remarkable.
"You're not invulnerable when you're 22 years old, I know that now. Things can happen," he says. "It changes the way you look at things. It changed what I'm doing with my life. Running a bone marrow registry is not what I envisioned, a year out of college.
"But I can't see myself not doing what I'm doing right now," he says, and smiles. ". . . After the transplant, leaving it all behind wasn't an option to me. How could I not keep doing this?"
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