Living With Cancer


Survivors and Battlers Alike Share A Common Bond

AARP Bulletin March 2016

  Remember when almost no one would even say the word “cancer?” 

 I was a high school freshman when my mom was diagnosed with breast cancer. I  learned about it via osmosis: my dad called me upstairs and there in the hallway he stumbled through some rigmarole about Mom has a lump, and she’ll be okay, but she’ll be having a lot of treatments, but don’t worry she’ll be okay.  

Thereafter, as I made the rounds on my small-town paper route, sympathetic ladies would come to their doors, tip their heads and smile sadly at me. “I hear your mother has…lady troubles,” more than one said. I nodded rapidly, handed them their copy of the Bergen Evening Record, and got the heck out of there. It wasn’t that I didn’t want to talk about it; I didn’t know what to say. I really didn’t really even know what we were talking about. 

Forty five years later, we now virtually throw parades for cancer. We wear T-shirts that proclaim, “Save the Boobies.” There are cancer benefit runs, cancer silent auctions, superstar cancer concerts, and cancer telethons. It seems like every day my computer spits out worrisome new info about cancers striking at bodily organs that I was barely aware of.  

The fact is, our culture talks about cancer as readily as it discusses Kardashians (except that there are some actual cures for cancer).  If you’re a guy, you have about a 1 in 2 chance of getting cancer, and a 1 in 4 chance of dying from it. Women have a slightly better outlook: a 1 in 3 chance of getting it and 1 in 5 chance of dying of cancer. For men, the big culprit is that little old prostate; for women it is the breast.   

We’re all living with cancer, whether we have it or not. Every one of us knows someone who now has or has had cancer. Nationwide, there are some 15 million people who are either now living with cancer or who have had it—and who live with the daily demon that whispers, “Is it back yet?”  

The cost of cancer treatment in the U.S. is approaching $100 billion a year.   In 1976, the 5-year survival rate for all cancers was just about 50 percent. Today, that’s up to 68 percent, which means millions more people than ever are living with cancer. But as anyone with cancer will tell you, there’s a big difference between merely surviving and getting on with your life. Patients, doctors, and researchers are increasingly learning that survival means a lot more than just finding the right surgery, targeted radiation or chemical cocktail.   

For patients, the cancer trail can be a long one—and it’s getting longer as survival expectancies lengthen. But instead of the old route—an oppressive landscape of blank chemotherapy room walls, spotty information and sense of utter helplessness—a new path is being blazed by experts who insist on humanizing the cancer treatment process. 

This new regime of comfy chairs, in-depth counseling, physical therapy, speech therapy, occupational therapy and even an occasional massage is not merely a nice thing to do, proponents say: It is essential to a patient’s ultimate well-being and, possibly, survival. I followed that new cancer treatment trail across the country, seeing in person how, for people with cancer, these evolving approaches are changing their lives for the better…and even extending them.      

The chemotherapy waiting room at the Memorial Sloan-Kettering clinic in midtown Manhattan occupies most of a floor, and on this Wednesday morning there are not a lot of seats available. But a long line of windows lets in a lot of light, and the activity behind the office windows opposite reminds these patients that life does not begin and end within these four walls. Nina Beaty smiles broadly as we meet up here. A lung cancer patient, she is a beneficiary of cancer screening—but also a victim of its whiplash-inducing implications.  

“I didn’t have any symptoms of cancer at all,” says Nina, 60, who started smoking at age 17 and quit in her early 30s. “A friend of mine died of lung cancer, and I just decided, ‘Well, why not get screened for it?’” The scan showed not only lung cancer, but a hyper-aggressive form of small-cell lung cancer.  

“The radiologist told me if I’d had the scan a month earlier, it probably would not have been visible,” she says. “If I’d had it a month later, it would have metastasized by then.” 

That was in January, 2014. Running its natural course, the cancer would have taken Nina in three months. The first round of chemo saw her tumors quadruple in size; the next saw them shrink. 

Then came a long steady-state period: Nina and her cancer striking a delicate balance thanks to a new trial immunotherapy drug.  But her mind keeps returning to that mind-spinning time when she thought she could count her remaining weeks on two hands. 

“I started thinking ‘Who am I?’ ‘What should I do with the little bit of time I have left?’ I wanted to leave a legacy, like the rest of my family has done.” 

This would be a good point at which to note that Nina’s grandfather was Richard Rodgers, who wrote the book and lyrics for Oklahoma! And The Sound of Music; her mother was Mary Rodgers, who wrote Once Upon a Mattress; her brother is Adam Guettel, who won two Tony awards for his musical A Light in the Piazza. So legacies, particularly of the musical kind, are a family tradition. But Nina, who professes to be virtually tone deaf, went a more private route, working on Long Island as an art therapist. For Nina, a capital-letter Legacy did not appear to be in the cards. 

“I figured I had until I was 80 to work on my legacy,” she says. “But suddenly, I didn’t have that long. Everything got telescoped. I wanted to figure out my purpose. My meaning.” 

Nina heard that Sloan-Kettering was launching a trial study in the area of  Meaning Centered Psychotherapy. She started having regular sessions with a psychologist who walked her through her deep desire to leave a lasting legacy. 

“I mean, what could I do in a few months?” she recalls. “Can I save a country in Africa? Can I find the love of my life? I’m 60 and I’ve been married twice. Be realistic.” 

But what about the lives she touched as a therapist. Isn’t that a legacy? “Yes,” she conceded, “but it’s not fancy pants. This is Manhattan! Where’s the building with my name on it? People like me aren’t the ones they write about.” She tilts her head. “You know, it’s ironic that you’re talking to me.”     

Nina’s meaning-centered therapy was co-developed at Sloan-Kettering by Dr. Mindy Greenstein, herself a survivor of breast cancer that struck when she was still in her 30s. Perky and energetic, for someone who spends most of her time counseling cancer patients she packs a formidable Brooklyn sense of humor.  

“I give a talk called, ‘If Cancer is a Gift, Where is the Returns Counter?’” she says. “But in some ways it is a gift. Nothing like a good hit of cancer to make you appreciate being alive. I did have a recurrence, so when people ask me how I’m doing my attitude is, ‘Ask me in 50 years when I can really tell you.’ 

“It reminds me of a moment when I was walking with my 10-year-old son Max in the neighborhood, telling him about my cancer, and that the doctors thought it was curable. He said, ‘If I had incurable cancer, I’d want to die that minute.’ I said, ‘You know, sweetie, I’ve known people who’ve been alive for 20 years with cancer.’ “He looked at me like I was an idiot and said, ‘What’s the point? You’re just going to die at the end anyway!’ I thought, ‘Welcome to the human condition, Bub!’” 

The whole notion of caring for the mental and emotional condition of cancer patients is a relatively new one, hatched at Sloan-Kettering in the 1970s by Dr. Jimmie Holland. She coined a term for her work—psycho-oncology—and founded the International Psycho-oncology Society. There are now 25 chapters around the world. Often Holland and her staff counsel patients whose anxieties prevent them from coming in for treatments. Other times they deal with depressed patients who are simply giving up.  

“Sometimes they just say ‘My family wants me to do this,” she says. “Sometimes the whole family might need therapy!” 

Holland and Greenstein co-authored Lighter as We Go, a book that examines how attitudes—in this case toward aging—can actually affect long-term health. Likewise, a cancer patient’s state of mind can have profound impact on their quality of life and even survival.  

“Jimmie showed with research that therapy helps patients,” says Greenstein. “Therapy improve the effectiveness of treatment, because somebody who feels emotionally stronger feels better equipped to do what’s necessary in treatment.” 

As she moves through the waiting room of her Manhattan counseling clinic, Holland is greeted by numerous patients—mostly older men and women, but some younger people, too. “When I first started making rounds with the doctors here, some of them said, ‘These people are sick! They don’t need a psychiatrist!’ But others said, ‘You’re finally here! Have we ever needed you!’”  

Listening to Holland and seeing the affection her patients hold for her, I can’t help but remember my wife Cindy’s four-year losing battle with ovarian cancer. Her Washington, DC oncologist was something of a genius when it came to devising chemo regimens, but the general office attitude was, “Hey, you’re still breathing, what else do you want?” During those four years, I tell Holland, the word “psycho-oncology” never crossed anyone’s lips.  

Holland shakes her head. “It’s still kind of new,” she says. “The cancer docs out there in the world are good, but it takes someone to come along and say, ‘We also need this.’”     

John is an old-fashioned kind of guy, and so is his approach to talking about cancer. A retired cop, 72-year-old John and his wife have decided not to tell anyone about his lung cancer. Not even their friends or children. 

“When you tell somebody you’re sick, sometimes they just don’t know whether to hug you or stay away from you,” says John, who asked me not to use his last name. “So I just don’t put them in that position.” 

If John’s social attitudes about cancer seem out of the 1950s, his choice of treatment is cutting edge. We’re sitting in a cozy lobby at St. Vincent’s Hospital in Worcester, Massachusetts. As cancer treatment centers go, St. Vincent’s is no behemoth like Sloan-Kettering. But the facility is part of a movement to centralize all aspects of a cancer patient’s treatments under one roof.  

At St. Vincent’s, a patient is never more than a few steps away from suites offering hematology, radiation, dietary counseling, physical and occupational rehabilitation, and state-of-the-art diagnostic tools. Most importantly, all departments at St. Vincent’s share patient information seamlessly, so everyone knows every aspect of a cancer patient’s treatments. Here, you don’t get referred to another doctor; you get sent to his or her office upstairs. Or perhaps they’ll even come to you.   

But even when a cancer center staff is perfectly poised to treat a cancer patient, if that patient isn’t physically prepared for the rigors of treatment—or just as bad, to return to useful activity after treatment is over—then no one’s going to be overjoyed with the outcome.  

That was a problem that vexed Dr. Julie Silver, an associate professor at Harvard Medical School, when she was diagnosed with breast cancer at age 38.  

“As my treatment progressed, I got very, very sick,” says Silver. “After my last treatment I asked my oncologist, ‘What do I do next?’ He said, ‘Go home, try to heal, and if you can, go back to work some day.’ That was devastating. I had three little kids at home. I wasn’t in any position to rehabilitate myself. It took years.” Inspired by her ordeal, a few years ago Silver co-founded Oncology Rehab Partners, a group that helps cancer treatment centers establish both rehabilitation and pre-habilitation programs for cancer patients. Now there are some 180 hospitals across the country that use as their standard what Silver calls STAR criteria: fully funded and cross-departmentally managed regimens that first prepare patients for treatments, then enable them to bounce back afterward. Up to 90 percent of cancer survivors have at least one physical impairment resulting from their treatment or illness, says Silver. 

One such patient was Tracy Sandberg, who in her mid-40s was told by her doctors at another hospital not to raise her arms in the weeks following her double mastectomy. That’s pretty standard, but Tracy did not know it was also absolutely essential that she start raising them soon after that. A physical therapist would have told her that from the start.  

Within weeks, Tracy’s shoulder was frozen solid. Worse, that meant she could not raise her arm to the necessary angle for radiation therapy. It fell to the physical therapists at St. Vincent’s, in consultation with the hospital’s radiation staff, to loosen Tracy’s shoulder as quickly as possible so she could start chemo. The whole mess could have been avoided if her surgeon had already been plugged in with a therapist.   A similar dilemma faced John, the retired cop, who needed to maintain a serious exercise routine the midst of his lung cancer treatments. His chemo doctors in Florida, however, had only vague advice in that department: “Stay active.” “We just sort of made up a rehab program of our own,” says John’s wife, who like him asked that I not use her name. “We started taking walks.” 

Heading back North for the summer, John continued his chemo treatments at St. Vincent’s and discovered the STAR rehab program right on the premises. Now, although John admits he isn’t quite up to “walking through walls like I used to,” the carefully calibrated STAR exercise program is maintaining his strength even as he continues to undergo chemo. He is far from out of the woods, and that makes staying fit essential to his future treatments. 

“The idea,” John adds, “is to increase my overall strength, my core strength, so I can handle what comes down the line. They challenge me here. I’m getting stronger both physically and emotionally.” 

As Silver shows me around, we hear a shout behind us. We’re being chased down in the hall by Dr. David Shepro, St. Vincent’s medical director. “I was not a believer in this,” he says, casting an apologetic glance at Silver. “I didn’t understand it. I was worried that the goals of therapy were not going to be practical things.  

“I was also afraid insurance companies wouldn’t pay for it. They care about high-quality care, but they also care about money. But here they’ve seen that we can prevent people from falling, and keep people at home in a more effective way. “I’m a big believer now.”     

Cancer treatment is never pleasant, but the closest thing to cancer treatment Nirvana may be the John Huntsman Cancer Center in Utah. Perched at the foot of the Wasatch Mountains overlooking Salt Lake City, the place was built from the ground up to infuse cancer treatment with a strain of humane, hopeful compassion. As I push through the glass doors, leaving the hot Salt Lake air outside, my eyes rise to take in the towering atrium; glass on one side, balconies on the other. Besides the streaming sunlight, the space is warmed by dark marbles and crafted cherry wood. From here on the ground floor I can see entryways to all of the hospital’s patient departments lining those balconies above.  

“You see? You don’t have to follow colored lines or footprints on the floor to find your way around,” says Mary Beckerly, the institute’s director. “We can just point and tell people, ‘Go there!’” It’s a small thing, but the open design of Huntsman is illustrative of what the place is trying to do for patients: Demystify cancer treatment and make patients feel less like blind consumers of care and more like active participants in it.  

Huntsman’s hospital rooms are all private, offer views of either the Salt Lake valley or the mountains, and have couches that convert into beds for family members (each room also has a dedicated shelf for flowers). The Cancer Survivorship Center, an integral part of the building, tries to boost patients’ physical and psychological well-being by offering an artist in residence, a retired folklore professional who helps patients assemble their life stories, a psychotherapist, acupuncture and massage. The rehab department, with soft lighting and new equipment, resembles a top-notch hotel health club.  But what takes my breath away at Huntsman is the chemotherapy infusion center—a sprawling, 31-chair room with floor-to-ceiling window views of the valley, individual enclosures reminiscent of a first-class airline cabin, and personal flat screen TVs.  

“Sometimes the storms roll in across the valley,” says Beckerly. “It’s quite beautiful.”  My mind races back to the experience of my late wife Cindy, jockeying with other chemo patients for a spot near a window, then all eight or so of them trying to decide what to watch on the single TV (some Alpha guy would often prevail, more than once choosing Andrew Zimmern’s Bizarre Foods—not the best fare for a bunch of chemo patients).  

Because Huntsman is a National Cancer Institute designated cancer center—the only one, in fact, between Denver and the West Coast--about 16 percent of its chemo patients end up in clinical trials. The shift from traditional treatments to last-chance trials can be traumatic—and often made worse by removing chemo patients from the familiar faces of their treatment center and sticking them in a clinical setting. “They start to think, ‘Oh, no. Now I’m really in trouble,” says Beckerly. “So we keep all the chemo patients here, in the room where they started. It’s a seamless continuum.” 

Once they are released from Huntsman, patients and their caregivers get regular advice and encouragement via telephone, and branches of the hospital’s extensive library of cancer-related materials are located throughout Utah.  Roomy infusion centers, homey hospital rooms, original art on every wall and an occasional massage are all very cool. But do they have any impact on patient recovery and survival? 

 “These sorts of things are not just nice things to do—they are medically helpful,” insists Dr. John Sweetenham, the institute’s medical director. “We do not separate our clinical care and research. Everything we do, we collect data on it, to make sure what we are doing is beneficial.” 

That doesn’t mean that health insurance will pay for a massage or storytelling session. But the staff at Huntsman feels those types of approaches are so important to cancer recovery they are absorbing the cost, largely through research grants, for now.  Besides, Beckerly said, “Mr. Huntsman like to say that when we finally beat cancer, we can turn this place into a really nice hotel.” 

“Mr. Huntsman” is Jon Huntsman, one of Utah’s leading citizens, a fellow who made his fortune in the formed foam container business—if you’ve ever safely transported a dozen eggs home in a plastic foam carton, you can thank Jon Huntsman’s process for molding expanded polystyrene. Huntsman—the father of former Utah governor Jon Huntsman Jr.—has donated some $1.2 billion to charitable causes, much of it to build the Huntsman Cancer Institute. 

But he’s more than just a benefactor; Huntsman has actively helped shape the direction of the center. He personally directed the warm, welcoming building designs and envisioned the research center’s focus on the genetic roots of cancer (the genes identified with melanoma and colon, breast, and ovarian cancer were all identified at Huntsman). It was his idea to plug into the Mormon Church’s vast genealogical library, located just down the hill in Salt Lake City, to research genetic patterns of cancer in families.

Like all of us, Huntsman has been touched by cancer, only more so—he’s had four different kinds of cancer in his lifetime. And there’s more. “I held my mother in my arms as she died of breast cancer in her 50s, then took are of my stepmother when she was dying of ovarian cancer, and then took care of my father, who died of prostate cancer,” he says. “Virtually all of my aunts and uncles died of some form of cancer.“ 

Huntsman, 78, slowly settled onto the end of a couch in his spacious office at Huntsman Corporation, a half-mile or so from the cancer institute that bears his name. I glanced at the photos of Huntsman with powerful figures, at the broad desk from which he runs a worldwide corporation. I recalled magazine photos of his opulent home. “It must occur to you,” I venture, “that cancer is an equalizer.” 

“It is,” he sighs. “The great equalizer. Economics, race, ethnicity, geography—when it comes to cancer, we’re all the same. “

I’ve traveled all over looking at cancer centers. I’ve seen the best and the worst qualities of each of them and made sure we eliminated the worst.”  

As I leave, Huntsman stops at a round table at the center of his office. It is stacked with Beany Baby animals. Protruding from the pile is the bronze head of a cowboy. “That’s a very nice Remington sculpture under there,” he says. “But people know I collect these Beany Babies, and they bring them to me. When I get enough I bring them over to the children in the hospital.” He chuckles. “The CEO of a Forbes 200 company. With Beany Babies!”     

We may have to start thinking differently about cancer. These days, anti-cancer fundraising campaigns use the language war: Kill Cancer; Defeat Cancer; Eradicate Cancer. A more realistic—and perhaps more humane—approach might well be to strike a truce with the disease. Not all cancers may be curable, and in some cases the cure may be worse than an all-out assault. 

“Prostate cancer is a classic example,” says Dr. Will Lowrance, who specializes in urologic cancers at Huntsman. “In many cases, we decide upon no active treatment at all–just surveillance. And there are others: thyroid cancer has been over-treated in the past. Some breast cancers. Lymphoma.  

“It’s counterintuitive for many patients. The gut reaction is ‘Get it out of me: radiation, surgery, chemo, whatever it takes.’ We’re coming around to a totally different way of thinking.” Patients and doctors alike may also be too obsessed with tracking cancer’s possible return, added Huntsman’s Sweetenham.  

“It used to be patient would come in every six months and we’d run a CT scan to see if the cancer was back,” he says. “But we’re finding that isn’t really helpful. In fact, it may well be the opposite as patients get exposed to more and more radiation. We’ve probably been too focused on making sure the cancer hasn’t come back, and not enough on whether or not the patient is thriving. It’s less helpful to keep looking back than it is to look forward.” 

 At Sloan-Kettering, though, Dr. Jimmie Holland notes that the battle-with-cancer mindset does seem to work for some people.   

“There is a tyranny of positive thinking,” she says. “I had one patient who told me, ‘The next person who tells me to be positive, I’m going to hit them in the nose—and love it!”       

This morning I left Nina Beaty in the capable hands of a good friend as she had her regular chemotherapy treatment at Sloan-Kettering. Now it is evening, and we are meeting for dinner at a restaurant near her apartment. She’s moved to Manhattan from her home out on Long Island to be closer to the hospital. 

I find her, looking small at a solitary corner table. She looks up and smiles broadly as I ask her how her day had gone. The treatment went well, she says, but her doctor, who two weeks earlier seemed more than a little enthusiastic about Nina’s progress, now seems to be backing off on her optimism.   

She opens a valise in which she’s brought some small artworks she has created during the course of her illness. One striking watercolor shows a smiling woman with a speech bubble above her head—empty of words. Behind her, creeping into the image from the shadows, is a colorful landscape labeled “future.” The painting is captioned, “Speechless.” 

Nina gestures across the table at the image. 

“I did that a couple of weeks ago, when the doctor told me I was doing better,” she says softly. She shrugs. 

“It is what it is,” she says. “When I didn’t seem to be making headway on that legacy thing, my former husband gave me a book by the Greek philosopher Epictetus. It’s all about focusing on the things that we can control, rather than the things we can’t. What is a good life? 

Is having great values enough to have a quality life? Is it about being with people? Is it about responding in the moment in an authentic way? These qualities are not important in our culture, but they are real. So I kind of found my peace in the Greek philosopher.” 

Our desserts arrived; a pair of towering chocolate things that threatened to topple over onto the tablecloth. Nina laughed at the possibility. 

“When you’re told so early on that you’re only going to live three months, to live for over a year and half, like I have, already feels fabulous. Isn’t that crazy?” 

Not crazy at all, I say. 

“No,” she insists happily, “it’s crazy!”  

A considerably shorter version of this story appeared in the AARP Bulletin March 2016