REPLENISHED
How five years after stem cell transplant, Bob Kaufman returned to running
Bob Kaufman had always been the picture of health — a marathoner, skier, hiker, golfer and, in high school, a lacrosse player.
“He’s the kid in college who never did drugs,” says his wife, Lisa Kaufman. “We go to a steakhouse and he orders fish.”
But in fall 2008, something was wrong. He felt bloated after eating, and he was tired. On a family ski trip, a family member who is a gastroenterologist gave him medicine for reflux, but his symptoms didn’t go away.
Friends were starting to notice a change in Kaufman, too. Longtime friend David Goodman, who went running with Kaufman every weekend, remembers noticing that Kaufman was slowing down. That fall Goodman told his wife, Patricia, “I’m going to have to stop running with him. He’s gotten to be an old man,” Goodman says.
In January, Kaufman saw his regular doctor, who ordered tests. It wasn’t good. His doctor set up an appointment with an oncologist for the following day. At 48, Bob Kaufman was diagnosed with stage 4 non-Hodgkin lymphoma. He was looking at maybe 10 years of treatment on and off, but no cure. The Kaufmans thought about their children, Ned, then 13, and Danielle, 8.
“I’m going to have an 18-year-old who is going to lose her father,” Lisa Kaufman says she remembers thinking. “All of it was very accelerated, but it wasn’t tomorrow that it’s going to happen.”
A year and a half later, Bob Kaufman would walk out of MD Anderson Cancer Center in Houston a 50-year-old man with the stem cells of a 22-year-old. Now five years after his stem cell transplant, Kaufman has written about that process in his new book, “Replenished: How Stem Cells Cured My Cancer.”
“Cured” is a big word. A stem cell transplant is the only treatment that may be curative, says Dr. Issa Khouri, Kaufman’s transplant doctor at MD Anderson. When Khouri considers what he knows about Kaufman’s treatment and what his other patients have experienced, he says it is “very likely” that Kaufman is cured.
Kaufman wanted to write about his “interesting journey” to provide hope and
encouragement for other people who might be considering a stem cell transplant or have a family member going through it.
Deciding on stem cells
After Kaufman was first diagnosed, he spent spring 2009 doing chemotherapy. His motherin-law, who volunteered at MD Anderson, had suggested early on that Kaufman get in the system at MD Anderson, which he did. Both MD Anderson and local doctors at Texas Oncology agreed on the same first course of treatment.
Doctors had expected that he would do a round of chemotherapy and that he would be in remission for years until it was time for another round of chemotherapy. But this first round only gave him a few months’ reprieve before more cancer was found that fall.
Because it came back so quickly, Kaufman decided to switch to MD Anderson. “Once it came back, we said, ‘We have to be more aggressive,’” Lisa Kaufman says.
While it wasn’t experimental, stem cell transplants come with some heavy side effects. The Kaufmans worried what it would do to Bob Kaufman’s quality of life. Would he survive the preparation to receive the transplant, and would they find a donor? He talked to people with stem cell success stories and weighed his options.
“Let’s figure out what’s the best path for me,” Bob Kaufman says. “Everybody’s diagnosis is different.”
“At the beginning, he was apprehensive,” Khouri says. “He wasn’t sure what had to be done. ... We had several meetings with him, and I personally explained to him that the transplant outcome may vary. ... Apprehension is very normal at the beginning.”
What sold the Kaufmans on the stem cell transplant was his doctor’s words that this was a high risk, high reward procedure, but in Kaufman’s case it would be low risk, high reward. The doctor wasn’t worried about him dying.
Preparing for transplant
Once Kaufman decided to do a stem cell transplant, his siblings were tested, but they were not a match. The first match from the donor registry was a 24-year-old woman, but she wasn’t a perfect match. Later another match came — a 22-yearold man who had been a student at the University of Texas. While on a Birthright trip to Israel, the donor got his cheek swabbed and became part of the donor registry. He was a perfect match, having the same 14 out of 14 markers as Kaufman.
It’s weird to think that “there’s somebody out there with your cell type that doesn’t look like you,” Bob Kaufman says.
The process of doing the stem cell transplant involves doing rounds of chemotherapy before hospitalization to try to effectively flatline the patient’s immune system.
On July 7, 2010, Kaufman entered MD Anderson to go through a week of more chemotherapy before doing the transplant on July 14.
Khouri published a study in 2012 about using low-dose intensive chemotherapy before a transplant instead of highdose. The mortality rate, he says, used to be 35 percent to 45 percent. Now it’s less than 10 percent, Khouri says.
Even with the low dose, Kaufman had to remain in the hospital.
The Kaufmans said goodbye to their kids, who were at camp and another summer program, and settled into life at the hospital.
“I thought it was really heartbreaking, saying goodbye to the kids,” Lisa Kaufman said. “Bob did exactly what you’d expect a dad to do: ‘It’s going to be fine, and I’m going to be fine.’”
Lisa Kaufman, who at the time worked for Texas Speaker of the House Joe Straus, set up her office in Bob Kaufman’s hospital room. She also ran interference and managed her husband’s care from that small pullout desk. After the first night of sleeping on a pullout couch in his room, they decided it would be better if she went home to her parents’ house at night for fear that she would run herself down too much and get sick and not be able to visit her husband in the ultrasterile 11th-floor stem cell transplant wing.
She remembers that he slept a lot. “Leading up to the transplant, you get pretty sick,” Bob Kaufman says. “You have to muscle through it.”
Lisa Kaufman says she was glad she was working at the time, because it gave her something else to focus on. There were scary times because he seemed so sick, she says. “But I didn’t really show that to him. I needed him to know that I wasn’t worried, because I didn’t want to give him any of my worry.”
Bob Kaufman had set up a Caring Bridge page to keep friends and family updated, and he always tried to inject humor. When he could no longer do the typing, Lisa Kaufman kept it updated and tried to get his humor down.
Goodman says Bob Kaufman was always matter-of-fact about what was happening.
“We didn’t worry about him,” he says. “It was almost like he took the worry away from everyone by the way he handled it.”
Meanwhile, the donor was having his blood drawn with a big needle to harvest the stem cells.
The business of life after transplant
Kaufman, who at the time worked for Dell in the public relations department, is now the chief communications and marketing officer for the Texas Department of Transportation. He treated his cancer and his eventual decision to do a stem cell transplant like a job project.
He had to be extremely diligent about what doctors told him to do. “You make a checklist to tick off things when you’re done,” he says.
At first Kaufman was taking 21 pills a day to make sure his body didn’t reject the transplant. His blood was being drawn often. “You do feel like a pincushion, even with a port” to allow access to a vein, he says.
He had to drink an enormous amount of fluid each day, be on a strict diet to get proper nutrition and get exercise. He was diligent about walking the halls and doing laps around the 11th floor. Often Lisa Kaufman went with him to make it less boring.
Remembering to eat and wanting to was hard, though. “And I’m a good eater. You have to keep at it. I know it is hard, but you have to keep at it and do what the doctors tell you to do,” he advises others.
There were reminders that the treatment came with risks. Not everyone who was on the stem cell transplant floor with Kaufman survived, including the person next door.
On July 27, 2010, doctors cleared Bob Kaufman to leave the hospital. It was really important to Kaufman to be able to walk out of MD Anderson just as he had walked into the hospital. A wheelchair attendant rolled him from his room through the hospital, and when it came time to go to the car, the attendant said, “OK, Mr. Kaufman, it’s time for you to leave,” and with that Bob Kaufman walked out of MD Anderson.
But he couldn’t go home to Austin yet. The protocol is to spend the first 100 days after transplant in the Houston area. Kaufman stayed with his in-laws. At first he had daily checks at the outpatient clinic.
His job at his in-laws was to continue to follow doctor’s orders to the T. Still, there were reminders of what he had gone through. Sometimes, after reducing the number of pills he was taking, he would have to add some back in when his blood counts didn’t look right.
“It was a disappointment,” Lisa Kaufman says. “It’s like when in a project and everything seems to be going fine and you have a setback.”
Bob Kaufman didn’t grumble, though, because he kept the end goal in mind. “I was most keenly interested in getting back to normal life,” he says.
In September, he was allowed to escape to Austin for Labor Day weekend, and Goodman remembers Kaufman being like “a kid in a candy shop. He was on cloud nine that weekend.”
Still, being away from his family in Austin most of the time and the daily regime of medication, fluids, exercise and medical visits did get to him.
Gus Stratakis, a friend since sixth grade, remembers talking to Kaufman one night, and the sound of his voice made Stratakis book a flight from Baltimore for the next day.
They had a meal together and caught up before Stratakis flew home less than 24 hours later.
“He always had a great outlook and a great attitude, which was comforting,” Stratakis says.
“It wasn’t woe is me.”
Life today
Kaufman came home to Austin for good on Oct. 18, 2010, 89 days after the transplant. While he still had to be cautious, he was determined to fully live life. He’s returned to running, and he marked the first anniversary of his stem cell transplant with a family vacation.
In 2012, the Kaufmans flew to San Diego to meet the donor, who is now in graduate school pursuing a biomedical career studying cancer. Bob Kaufman always had said he wanted to buy his donor a steak dinner, and so he did. It was a bit of an awkward meeting because the donor just thought it was a cool medical thing to do. “To us it was a huge deal,” Lisa Kaufman said. “He saved my husband’s life.”
Bob Kaufman decided to write the book in time for his five-year stem cell transplant anniversary in July. “The book was really my way to give back to the cancer community to help people,” he says.
Going through the treatment was tough, and he wanted to give readers a realistic account of what happened. “You’ve got to expend the energy to do it, but look at the payoff. I feel like a 20- to 30-year-old,” he says, and his immune system puts him at 27.
He’s visited MD Anderson with book in hand and gone back to the lab. He told the people there, “I’m a success story of this clinic.” And he handed out his book. The patients there clapped. “I felt so good about it,” Kaufman said.
He goes once a year to MD Anderson to get his blood drawn and has no fear of bad results. “I find it energizing,” he says.
Now, he says, he doesn’t sweat the small stuff. Kaufman tells people the oft-quoted, “Every day is a gift, that’s why they call it the present.”
“It gives you a great deal of perspective on what’s important in life,” he says. “It forces you to take stock in your life.”