The Long Engagement
After decades as a feared killer, cancer is slowly becoming what was once unthinkable: a disease people live with. Meet Jeff Tirengel and his on-again, off-again relationship with cancer.
The lime green rubber bracelet on Jeff Tirengel’s wrist is engraved with a simple message: “No one fights alone.”
It was a gift from one of his classes at the California School of Professional Psychology at Alliant International University, where he has taught graduate students for 20 years. The class presented it to him shortly after he announced that he would have to undergo a bone marrow transplant—his second—to treat his third lymphoma in five years.
“One of my students handed it to me, and when I looked up, I realized they were all wearing the bracelet,” Jeff recalls. He shakes his head. “Man, how lucky am I?”
It’s a sunny afternoon in early April, just two weeks after his transplant, and Jeff, 62, is relaxing in his Santa Monica home. In his customary deadpan humor, he jokes that he is under “light house arrest” until his new immune system takes hold. His demeanor is gentle and kind, his voice quiet and calming. It’s easy to believe that he has guided others through crises during his long career as a psychologist.
He looks down at the wristband and slowly twirls it around. There is just one word he would change. “I don’t feel like I have to ‘fight’ cancer,” he explains. “I’m not battling it. I prefer the term ‘engaged.’ We’re engaged, cancer and I. If we break off the engagement, so be it. If not, we could be engaged for a while.”
Back in 1971, when President Richard Nixon launched the War on Cancer by signing the National Cancer Act, no one was talking about being “engaged” to the disease. Military metaphors dominated the discourse. Patients were fighters; cancer was a battlefield. The end game was cast in black-and-white terms: Defeat cancer or die.
Today, that win-or-lose framework remains entrenched in how most of us think about cancer. But those who study and treat the disease say that a new paradigm is emerging, one that is much closer to Jeff’s “long engagement” metaphor. Slowly, quietly, cancer is morphing from an acute killer into something few predicted 40 years ago: a chronic disease. That may not sound like cause for celebration to those who believed cancer could be made a thing of the past, like polio or smallpox. But for many of today’s cancer patients—and tomorrow’s—it means a greater chance of living longer with cancer, and living better. It also means that after decades of seeing cancer only as a villain to be vanquished at all costs, our next challenge may be to learn how to live with it, establishing a sort of peaceful coexistence.
Of course, not all cancers are created equal, and certain types still have dismal survival rates. But today, the number of cancer survivors in the U.S. has risen to 12 million versus just 3 million in 1971. The National Cancer Institute estimates that 65 percent of cancer survivors have been alive for five years or longer since being diagnosed. Forty percent have lived at least 10 years, and nearly one out of 10 have survived 25 years or longer.
Behind those numbers lies a spate of research breakthroughs, which have led to improved early detection methods, better surgeries, and a sea change in the way many of today’s cancer treatments work. In the past 20 years—and especially since 2003, when scientists finished mapping the human genome—medicine has made giant leaps in understanding the complex biology, genetics, and molecular structure of cancer cells.
That has led to new “targeted” drugs that work not through chemotherapy’s indiscriminate mass destruction but by inhibiting specific gene proteins and molecules to kill tumor cells or slow their growth.
It’s not the “penicillin for cancer” that many thought possible in the 1970s. And much more work remains to be done before cancer truly becomes a controllable, diabetes-like condition. In the meantime, along with better outcomes and prolonged lives, recent innovations are creating a set of new challenges—physical, emotional, spiritual, and financial—for patients.
More people are living with cancer, but it’s no easy task.
Jeff’s first lymphoma diagnosis came in 2007 after he noticed a strange skin lesion on his forearm. He thought it was an insect bite.
Lymphoma is the most common blood cancer, but there are roughly 30 to 40 different types, ranging from “indolent” or slow-growing types to aggressive ones. Jeff was among the lucky ones. His type, a lymphoma of the skin, was diagnosed as indolent. Doctors told him it would take decades to become a serious problem.
He was uneasy. “I didn’t like the idea that I had this time bomb ticking,” he explains. He opted for treatment at Cedars-Sinai with a drug called Rituxan®, a targeted therapy that binds to a specific molecule in lymphoma cells to inactivate them. For two years, he was fine. Then, in fall 2009, he came down with what he thought was the flu. By December, he was in the hospital with a fever that shot up past 105 degrees. This time, Jeff was diagnosed with a different kind of non-Hodgkin’s lymphoma. This one was aggressive.
It was just the beginning of his on-again, off-again “engagement” to cancer. In July 2010, he underwent his first bone marrow transplant, one in which his own stem cells were harvested and returned to him. That worked—until he was diagnosed with a third type of lymphoma a year later. In March 2011, he underwent a second bone marrow transplant, this one with stem cells from a donor.
Jeff takes 16 pills each day and says fatigue is currently the most difficult thing about the disease. He has learned not to dwell on unanswerable questions: Will he get graft-versus-host disease? Will the transplant cure his lymphoma? If it does, will the cancer come back? And if so, when? “So much of this process for me has been about coming to terms with not knowing, without being made crazy by that,” he says.
A practicing psychologist, he works part time at Cedars-Sinai running support groups for both pulmonary and heart patients. He finds that cancer patients’ experiences are vastly different.
“Cardiac patients really want to get back to the life they had before,” he says. “There are heart function tests that might tell you that your heart is even better now. You can tell yourself, ‘I’m safe again,’ and move on.
“I don’t think cancer patients ever experience that. You can hit the five-year mark, but it’s a statistical mark, not a biological one. Most of these patients talk about the ‘new normal,’ about never getting back to the life they had before.”
Helping cancer patients transition to that “new normal” is the mission of Arash Asher, MD, director of the Cancer Survivorship and Rehabilitation program at Cedars-Sinai’s Samuel Oschin Comprehensive Cancer Institute.
An array of residual “battle scars” lingers even after patients finish treatment and are declared “clear.” Fatigue, memory, and cognition changes (referred to as “chemobrain”), chronic pain, insomnia, depression, anxiety, and sexual problems can all be profoundly debilitating for patients as they try to resume their personal and professional lives.
Dr. Asher and his team offer several innovative programs, including a “chemobrain” class and an individualized exercise and rehabilitation program, to help patients deal with these lingering issues. Supportive care services also help patients with pain management, nutrition, psychological issues, spiritual care, and other needs.
In Dr. Asher’s opinion, the most important part of survivorship care may have little to do with the medical aspects. He points to Viktor Frankl’s classic book Man’s Search for Meaning, in which the author theorizes that Holocaust victims who found meaning in their suffering were more likely to survive.
“To me, one of our most important jobs is to help cancer patients find meaning in the midst of their suffering,” he says. “No antidepressant, no pain medicine, can do that.”
Medicine is also of little use in dealing with another challenge: money. The same innovative therapies that are turning cancer into a chronic disease also can place an acute financial burden on patients, even those with insurance. According to a 2011 study presented at the American Society of Clinical Oncology, the risk of personal bankruptcy increases in the year after a cancer diagnosis.
Deane L. Wolcott, MD, a psychiatrist and director of Oncology Supportive Care Services, says financial considerations are a major source of stress for patients and families living with cancer. “In some ways, we’re victims of our own scientific advances,” Dr. Wolcott says. “How are we going to pay for actively treating these patients with cutting-edge technology? I don’t have an answer.”
Addressing cancer survivors’ quality of life goes beyond post-treatment care. Scientists are trying to alter treatments in ways that minimize or prevent “collateral damage.” Part of that involves developing less-toxic drugs, but researchers are pushing the envelope to create less-radical surgeries, too. A telling example: breast cancer.
Last year, Armando Giuliano, MD, executive vice chair of Surgical Oncology, published research that found no difference in survival rates between women undergoing total lymph node removal and those having just the “sentinel” nodes—the ones closest to the tumor—extracted.
That is important: Total lymph node removal often leads to lymphedema, a painful, debilitating, and chronic swelling of the arm.
“Treating patients doesn’t end with stopping the cancer,” says Dr. Giuliano, who is also co-director of the Saul and Joyce Brandman Breast Center—A Project of Women’s Guild. “We want to make sure we maximize patients’ quality of life even after treatment is completed.”
He and surgical oncologist Alice Chung, MD, are working together to study whether procedures such as nipple-sparing mastectomies are safe for high-risk patients. The improved cosmetic result can enhance women’s self-image after a mastectomy.
As more women survive breast cancer, however, a new worry has arisen: developing a second cancer. Women who have had cancer in one breast have a higher risk of getting another cancer in the same breast or on the other side. And like cancer itself, the fear of cancer is not easily defeated.
“Now that many patients are outliving their cancers, some are also developing new ones,” Dr. Chung says. “And that has led to an increased rate of bilateral mastectomies. Some women come in and say, ‘I want them both out because I don’t want to have to worry about this again.’”
One of the toughest parts of Jeff’s journey came just a few weeks after his second lymphoma diagnosis. In February 2010, his wife, Margie Somers, was diagnosed with breast cancer. “I remember thinking, ‘I can handle my own cancer,’” Jeff says. “But the notion that I’d have to do it without Margie—I wasn’t ready for that.”
Fortunately, her cancer was stage I, and Margie underwent a lumpectomy and four months of radiation. While Jeff worried about her, she worried about Jeff.
“You’re suffering for yourself, and you’re suffering for your spouse, too. It’s a double whammy,” Margie says.
Still, their cancer experiences have brought the couple— who have been married 33 years and have a 30-year-old daughter, Jodi—closer together.
“Luckily, we’re getting through this fine,” Margie says. “But there’s always that concern that you’re not going to be able to emotionally handle what comes up. You think, ‘Can I get through it?’ And then you do. That’s the good news.”
Jeff in particular has drawn on his experience as a psychologist helping others through crises, and on his 20-year practice of “mindfulness,” or keeping one’s full attention on the present moment.
“It helps me not to get too caught up in, ‘Oh my God, this is scary,’” he says. “I have reason to believe now that I can handle whatever comes up.”
“I’m not afraid of dying,” he says. “I’m not racing to get there, but I’m not afraid of it. Death is just another part of the uncertainty.”
Another word on Jeff’s lime green bracelet jumps out at him: “alone.” His students still wear their wristbands. Fellow teachers have filled in for him. He’s made new friends through a cancer support group. His phone has a constant stream of messages from people checking on him.
“I have not had to do this alone,” he says. “A lot of people have shown up for me, and I want to be able to show up for other people.”
Jeff looks forward to teaching again once his immune system strengthens. He also plans to attend his 45th high school reunion this summer in Chicago. Meanwhile, he and cancer remain engaged. He doesn’t think about winning or losing. He is one of millions of people pioneering a new path: how to live with cancer. It is not a cure, but for him, for now, it is enough.
“The challenge in front of me, and I guess all of us, is to enjoy every moment,” he says. “My view is that everything I’ve learned from this, whether I’m cured or not, should inform how I live my life going forward.”