Art and Life
By Rich McManus
On the Front Page...
Budget officer at NICHD for the past 20 years, he is a ubiquitous noontime -- and later -- jogger, a perpetual treasurer of NIH's Health's Angels Running Club ("my other permanent job"), and virtual poster boy for middle age athleticism. Trim as an 18-year-old rower, easygoing and affable, he's a campus fixture in any season in jogging shorts and T-shirt: Hey, how come he's always out there schmoozing with some female running partner while the rest of us are bustling, unaccompanied, to some tedious meeting? What's this guy's secret?
It turns out that Art did have a secret, one he had known for at least 2 years before sharing it broadly with colleagues last fall, when he was admitted to the Clinical Center for treatment of chronic lymphocytic leukemia that had transformed into lymphoma.
It all began in November 1994 when Fried, a donor not only of whole blood, but also of platelets, granulocytes and other blood products at the NIH Blood Bank for virtually all of his 25-year NIH career, tried to schedule a routine platelet donation. The bank had noticed during his last donation 3 months earlier that his white blood cell count was elevated to around 17,000 instead of the normal range below 10,000. It had been noted on his chart, but no one said anything to him at the time. The Blood Bank referred him to his physician at Kaiser for a CBC -- complete blood count.
Doctors at Kaiser measured his white cell count in the range of 20,000, so whatever had been boosting Fried's levels in August was still at work. All evidence pointed toward some form of blood cancer, and soon a diagnosis was made: chronic lymphocytic leukemia, or CLL.
"They told me CLL has stages, and my stage was just a high count of white blood cells," Fried remembers. "I was told that the lucky folks could live with it for a long time. It can be an indolent-type disease. However mine progressed quite a bit faster."
Still feeling hale, Fried took a ski vacation in Idaho in January 1995, then accompanied the NIH Ski Club on a jaunt to France later that winter.
"I kept running, too, and was totally asymptomatic at this point. But I knew I had cancer and that it was in my blood."
Although Fried continued to feel healthy, his blood counts continued to concern his physicians, who checked him every 3 months. "My white counts were rising fast," Fried relates. "Each time, they were clicking up by increments of 10,000 or 20,000. I was not a slow runner," he laughs, edgily. "I was with the 'rabbits.'"
Fried still felt well enough in the winter of 1996 to accompany the NIH Ski Club to Italy, but by then his white counts were in the 100,000 range.
"Only a few people knew" about his condition at this point. "I basically kept it to myself."
He still felt okay last summer, but then the cancer began affecting his red cell counts, whose decline was heralded by a fatigue to which Fried was unaccustomed -- suddenly his noontime jogs began wearing him out.
"The only sign was in running. Once my hemoglobin started to slip close to the low end of the normal range, I could tell that I was dragging a little bit."
Last June, Kaiser physicians who had been following him but not administering any drugs, began therapy with something called 2-CDA, a standard therapy for CLL. Late in August, Fried developed a large growth on his neck. "It happened quite suddenly, on my lymph node. Kaiser surgeons cut it out, and had the tissue referred here for review by Dr. Elaine Jaffe at NCI, who is world-renowned for her pathology expertise. She identified it as lymphoma. So I had CLL and lymphoma, and more aggressive treatment was needed."
At about the same time, Fried noticed an odd skin problem. "It had many doctors stumped. Some diagnosed it as poison ivy. But it was related to the lymphoma," he learned. "It's called Sweet syndrome, it's nasty and it leaves behind extensive scarring of your skin. It's also rare enough that Dr. Maria Turner, an NCI dermatologist, arranged for a picture shoot."
As his health problems grew worse, Fried's circle of consultations at NIH grew wider and soon Dr. Alan Rabson, NCI deputy director, was offering help. "It's incredible how he latched onto the problem and steered me to the right person at NCI," Fried remembers.
The right person was Dr. Wyndham Wilson, principal investigator on an NCI lymphoma study. He met Fried to review treatment options and for the first time Fried heard dire terms regarding his prognosis. "The situation was very serious," Fried discovered. "When there is a transformation from leukemia to lymphoma -- a process known as Richter's transformation -- survival prospects are described as 'short.' It was a bad diagnosis. I still have the PDQ (Physicians Data Query, an NCI database for those who treat cancer) article describing it."
Wilson enrolled him in EPOCH II, a study involving six cycles of drug administration followed by interleukin-2. The consent form for the study, running six single-spaced typewritten pages, includes a roster of seven medications, each of which warns against such side effects as hair loss, constipation, diabetes, heart attacks, the prospect of even causing leukemia, and death.
"My nurse practitioner, Jennifer Goldstein, told me that this treatment was like having a bone marrow transplant. That's how intensive it was. But I also realized that this was my chance, this was my shot. Without it I could easily be dead by now."
Though he never felt he received preferential treatment as an NIH'er, Fried says he gained new appreciation for the difficulties encountered by Clinical Center patients who hail from outside the area.
"I realize how hard it is for people who come from far away, who don't have the local support network," he said. Because even the single-page protocols can involve serious complications, Fried is glad that his difficulties -- which turned out to be legion, most recently a case of shingles -- could be addressed with relative ease. "I live very close by, and I have literally had to come in in the middle of the night with fevers and other problems. What do people do who can rely only on their local community hospital, with its limited resources?"
Each phase of the chemotherapy resulted in severely low white counts, a condition called neutropenia, "which made me susceptible to infection and disease. It resulted in three or four admissions to 12 West, the oncology unit. The nurses there were superb, really caring and supportive. And that was equally true for the outpatient nurses."
During one neutropenic episode, Fried suffered a serious infection at the site of an intravenous line, complete with 105-degree fevers for a time; surgeons had to cut out an infected vein in his wrist.
"Each time I had a problem, teams of specialists -- immunologists, surgeons, hematologists and dermatologists -- would come in, all working for me," he marveled. "It's like an army of experts right there for you. It was a big advantage just being here in Bethesda, where you can come in for treatment of the complications that will inevitably occur."
Alternately an inpatient and an outpatient as he progressed through the six cycles of EPOCH II, Fried was in the research arm of the study, which included immunotherapy: stem cells from his peripheral blood were harvested before a harsh round of chemotherapy, and stored (Fried jests, "in the GSI cafeteria freezers") only to be returned later to help reconstitute his immune system. Three of the cycles involved inpatient visits as he withstood staggering rounds of anticancer drugs; the other three cycles could be completed outside the hospital and involved portable pouches that infuse medications into the patient's central venous catheter; he also had to inject himself with granulocyte-colony stimulating factor to help rebuild his white cell count. "All along, NCI was very concerned with limiting the side effects, particularly for nausea."
His first trip to the CC for EPOCH treatment last September helped put the 52-year-old Fried's plight in perspective: "I was waiting for them to install a PICC line (a catheter to deposit drugs near his heart) when I saw that girl Becca (Rebecca Lilly, a teenager whose brain cancer treatment has been followed in the Washington Post health section for the past year) being prepared for a procedure. She's been fighting a brain tumor for the past 6 years. Now that's tough. I'm lucky. My kids (a daughter, 27, who is in psychology grad school at the University of Virginia, and a son, 25, who helps manage pension funds in Boston) are grown and out of college. You realize how much worse it could be. I'm really thankful."
Always an upbeat, looselimbed type anyhow, Fried credits his positive outlook with helping him stare down cancer. The order in which misfortune befell him was also within tolerable limits: "It happened in phases," he explains. "At first it was an elevated white cell count, and I thought, 'So what?' Then came a diagnosis of leukemia. But that could be an 'indolent' variety. Then it was 'Yeah, but yours is more aggressive.' And I said okay, but there's treatment. Each one was an increment that made it easier to handle because it was only an increment. I never had a 'brick wall' diagnosis. So I never had a feeling of depression. I've always had a positive attitude anyway. And I've gotten unbelievable support from my institute, with regard to flexible hours and the support of my colleagues.
"If you have to have a thing like this, this is the best place in the world to be," he declares. "There's not even the shadow of a doubt."
Though he never was off work for more than a few weeks at a time, Fried is now back on the job, coming in late and working late, but walking at noon with a decidedly new bounce in his stride, and offering huge hellos to the people who have missed him. He can't wait to run, but must await the return of his red cell level for such an indulgence.
He is still being closely monitored for return of his cancer, but so far, so good. "It's a matter of keeping watch on it now, and keeping it in abeyance for as long as possible," he says. "I've had to learn to live with the idea it could come back at any time. There's no guarantee."
He is deeply grateful to the donors who have helped him withstand some 40 transfusions in the past 8 months. "I never dreamed I'd go from being a donor to being a person who needed blood," he admits. "I thought I'd be donating forever."
Since being diagnosed with leukemia, Fried has learned that his older brother has it, although in a silent form, and that his uncle died with the indolent version. "They definitely think it's something in the family."
As he looks out on a 70-degree April noonhour burgeoning with new growth, Fried designates it "a 5-mile day. Yeah, definitely, this is a 5-mile day." He had calculated -- ever the budget officer -- that 6 weeks following his IL-2 therapy, he would be able to resume jogging. But his red cells aren't agreeing with his math, which results in palpable frustration.
"Of course the most important thing is how long I can stay cancer-free," he consoles himself, "not how long it will take my red cells to come back."
He thinks back to the outpouring of affection that figured immeasurably in his emergence from this trial: "I got so many cards and emails. On Valentine's Day, I received a monster card with notes from just about everybody on the [Bldg. 31] second floor. One of the HSAs gave me a totem head, a talisman from Asia. All of the good thoughts and positive things -- it does make a difference. I like to think that it does. I'm banking on the fact that it does!" he laughs, his face flushing with merry red cells.
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