How’s Hugh Fagan?
“I’m great,” he says on the phone from Texas.
The truth? He’s four inches shorter. His abdominal organs are squeezed into a smaller pocket, causing a pooched belly. He has puzzling bouts of fatigue, “fuzzy brain” and serious back pain. Seven years after his cancer cure, he can’t golf. He hasn’t returned to his investment-banking career. But ask about his health and you won’t hear all that. Fagan isn’t convinced folks want to know. And he sees no point in revealing it.
How’s Daryl Huff?
“I’m alright,” he says on the phone from Tennessee.
The reality? He has dead bone tissue in every joint, causing a constant, full-body pain that narcotics don’t touch. He struggles to sleep. He walks with a limp. Twenty six years after his cure, his range of motion is so limited, he can’t tie his own shoes. But inquire about his life and Huff tends not to share these facts after often hearing, “Well, at least you’re alive.”
They are each survivors, both long free of leukemia. The damage that dominates their days wasn't caused by their disease but by their life-saving treatments. As cancer care improves, more people than ever are outliving malignancies — there are now nearly 15 million cancer survivors in the U.S., a population that’s expected to reach almost 20 million by 2024.
The majority of disease-free cancer survivors, those five or more years removed from treatment, say their quality of life is comparable to people who never get diagnosed, the American Cancer Society reports. But others live with long-term effects.
An estimated 25 percent of cancer survivors have a decreased quality of life due to physical problems — and about 10 percent due to emotional issues — according to a 2012 survey of nearly 2,000 cancer survivors conducted by Wake Forest School of Medicine.
Some endure a litany of late effects from the chemotherapy, radiation, surgery and/or bone marrow transplants that eradicated their diseases. These can include digestive problems, heart issues, lymphedema, nerve ailments, joint deterioration, sexual dysfunction, depression, infertility, incontinence, graft-vs.-host disease (GVHD), continual pain or the loss of body parts, mobility, energy, confidence or self identity.
This is the cost of their survival.
At Fred Hutchinson Cancer Research Center, the Survivorship Program helps patients seize more control of their health, boost their outlook, rebuild their vitality, and learn how to educate family, friends and healthcare providers about their needs. And in the labs, researchers are pursuing better treatments and cures that will have fewer side effects.
“There are a number of these survivors who face lots of these problems with functional limitations on a long-term basis. The severity is of varying degrees,” said Dr. Scott Baker, director of the Hutch program.
Cancer treatments done 20-plus years ago, when Huff was cured, were generally far more toxic to patients. Oncologists and researchers continue to learn how to dial in dosages to mitigate short- and long-term side effects. There is still work to be done in this realm. New treatments are also being developed that are less toxic. Immmunotherapy — a focus of science and clinical trials at Fred Hutch — is rooted in the concept that the body’s own immune system can rid cancer cells, alleviating the brutal complications often associated with chemo and radiation.
“The focus (of cancer treatment) has always been on cure, although there is certainly an increasing amount of focus directed toward acknowledging the fact that survival is not everything, that we have to pay attention to the quality of that survival,” Baker said.
Indeed, Fagan and Huff emphasize that they are grateful to be here. But their cures, they say, didn’t mark the end of their cancer experiences. Only the start.
And they now see it’s hard for those untouched by cancer to grasp that the scales of life don’t necessarily balance with survival perched on one side and a jumble of chronic complications heaped on the other. It’s just not that black and white, they say. It’s also not an easy conversation for survivors, loved ones or friends.
"The damage is done,” said Huff, 58, who underwent a successful bone marrow transplant at Fred Hutch in 1990 for chronic myelogenous leukemia. High doses of prednisone later administered to Huff to knock out chronic, life-threatening GHVD caused avascular necrosis, or bone death, in every joint. As a result, he can no longer play tennis or hockey, bike, cut his own toenails or pull on his socks without a rope device. Putting on shirts is a struggle. He feels pain “in every square inch, every day.”
“It’s not like I can’t enjoy listening to music or eating a steak. It’s not like life is totally devoid of enjoyment. But it’s a major impact,” said Huff, who lives near Nashville. “There are times when you’re in such pain, you’re thinking, I’d just as soon have somebody cut my arm or leg off to get rid of that pain. It’s that bad.
“It’s easy for somebody to stand back and ask, ‘Would you rather be dead?’ Well, sure, I’d rather be alive. Some people go so far as to say, ‘Stop whining about the pain, you’re alive, that’s all that matters.’ Live with my pain for six months, then we’ll talk.”
Huff resides in a community steeped in faith. After his cure, many people at his church told him he was a “walking miracle” and a “testimony to God’s mercy and grace.” Years later, he questions those statements.
“If that’s the way it worked, God decided to let me survive when so many people die, that’s great, but I’m now condemned to living in excruciating pain the rest of my life. It’s like, well, those don’t go together,” Huff said. “If you’re going to let me survive, well, why can’t I have a normal body? Why did I have to go through this? What’s the point?”
In Dallas, Fagan, 46, is trying to come to terms with a limited — and shorter — body following a cord blood transplant in 2009 at Fred Hutch that cured his acute myeloid leukemia. He later received large, prolonged doses of prednisone to treat what doctors initially believed was GVHD but turned out to be an infection in his lungs. The steroids weakened his muscloskeletal system, causing at least six vertebral fractures and a “pancaked” spine that shrank his torso by more than four inches, he said. He also has avascular necrosis in one shoulder.
On the golf course, where Fagan once boasted a competitive handicap, he’s forced to ride in the cart with buddies because he can’t swing a club. He also can’t lift heavy objects. He discarded the work suits that no longer fit his now 5-foot-6-inch frame. When driving, he adjusts his seat fully forward to see over the hood. His digestion has never been the same. Lacking his former energy and stress-coping ability, he hasn’t returned to his career as an investment banking executive. While his wife, Aimee, works as a lawyer, Fagan has assumed home-cooking duties. But after one hour standing in the kitchen, his back barks with pain.
“This is the true cost of my survival: If my identity was really tied up with my professional career, which it kind of was, I’m a lost person right now because I have no idea what I’m doing. That was taken away. I’m trying to figure out what Hugh 2.0 is. And I still don’t know,” Fagan said.
“If someone asks, ‘How are you doing?’ how do I answer that? If I tell them how screwed up I am, it seems like I’m not thankful to be alive. Absolutely, I am thankful. But it can be awkward,” Fagan said.
“So, here’s how I frame it all up: When my feet hit the ground in the morning, I make the choice of how I want to be. Do I want to be the thankful version of me? Yes, I try to be pretty chipper. Now, sure, (privately), I have a pity party now and then. It’s not all unicorns and rainbows.”
Several factors cause cancer patients and survivors not to honestly or fully answer the “how you doing?” question, said Dr. Jesse Fann, director of psychiatry and psychology services at Seattle Cancer Care Alliance, the treatment arm of Fred Hutch. Two common reasons: they may feel others aren’t sincerely interested in hearing the complete truth, or they don’t want to be a “downer” when interacting with friends, family and coworkers.
“My recommendation to patients is that balance is critical,” Fann said. “While it is important for patients to have a safe outlet to talk about their cancer experience, perhaps with certain family and friends or support groups, it is also important for them to be able to interact around topics other than cancer.”
Where can survivors vent safely?
Survivorship programs, like that at Fred Hutch, can be a healthy resource. Similar programs exist at Memorial Sloan Kettering Cancer Center in New York and Dana-Farber Cancer Institute in Boston.
The American Cancer Society also supports a Cancer Survivors Network – and its discussion boards and chat rooms contain people answering questions about psychosocial needs post-treatment, said Emily Jo Rajotte, manager of the Fred Hutch survivorship program. Some private practice health clinics, like the Orion Center for Integrative Medicine in Seattle, are designed to help improve quality of life for cancer patients. Social media groups like BCSM, private Facebook groups and online communities like Inspire can also offer a place to connect with other patients who "get it."
Sharing their experiences and symptoms helps survivors know they are not alone, supplying validation — and, sometimes, crucial context.
“I’m probably better off than some of my colleagues who have gone through this,” Fagan said. “I know it could be a lot worse.
“That’s part of this whole mind game. What do you want your story to be? I don’t want my story to be how worse off I am now. I want it to be a story of strength and survival, of determination and gratitude.”
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Bill Briggs is a former Fred Hutch News Service staff writer. Follow him at @writerdude. Previously, he was a contributing writer for NBCNews.com and TODAY.com, covering breaking news, health and the military. Prior, he was a staff writer for The Denver Post, part of the newspaper's team that earned the Pulitzer Prize for coverage of the Columbine High School massacre. He has authored two books, including "The Third Miracle: an Ordinary Man, a medical Mystery, and a Trial of Faith."