Hospitals' 'hope coaches'

The Baltimore Sun

Cancer treatments had turned Marina Pena's once-full head of hair into a few wispy strands. Embarrassed, she hid them under a ratty blue fleece hat, one hardly suited for an 85-year-old grandmother.

Anne McNerney knew how Pena felt. Years ago, the moment McNerney realized her own fight with cancer was taking her hair, she bought a wig and had her husband give her a buzz cut.

So, one recent morning while Pena was getting her chemotherapy, McNerney appeared with a shopping bag kept in her desk drawer for just such occasions. Inside was a wig. The style, a short, Hillary Clinton 'do, but a few shades darker, was perfect.

Pena was giddy. She rolled her IV pole down the hall to get a look in the mirror, the wig's tag still hanging over her left ear. "It makes me look young," she said with a laugh.

McNerney smiled. She was doing her job.

McNerney is the patient navigator at the University of Maryland Medical Center. Her charge: To ease the life of the hospital's cancer patients in any way she can. That may mean finding help to pay for the tolls and gas to get to Baltimore for treatment, translating the arcane language of cancer treatment into plain English, or just holding a hand if that's what the patient needs.

Her job title - which didn't exist a few years ago - came about to deal with a health care system that can be overwhelming, even frightening, especially patients are the sickest. They wonder if they're going to die. They wonder if their insurance will cover the bill. They wonder if they'll ever make it through the maze of treatments and appointments and who-knows-what-else that lies ahead.

"Once you're diagnosed, you're free-falling for awhile," she said. "You're like a deer in headlights. You have a million questions ... . They just want someone to listen. Ninety-eight percent of the time we connect. They don't know what to expect and I've already been there."

McNerney's own cancer story brought her here. When she got the news in 1992, she was 39, with four children under 5, and a high-stress job in an office with a harbor view. She had breast cancer.

Her four months of treatment covered the gamut of therapies - 16 rounds of chemo, radiation and surgery that turned her life upside down. Somehow, she pulled through.

She tried to go back to the life she had before - but couldn't. She was a changed person. She quit her job - "I didn't buy expensive shoes anymore, but I didn't care" - and stayed home to raise her kids and help with her husband's construction business. She was happy.

A few years later, her husband suggested she volunteer at St. Agnes Hospital near their Ten Hills home, where she had been treated. Absolutely not, she said. "I don't even drive by that hospital without feeling waves of nausea," she told him.

In the end, she returned to the place that cured her. She volunteered at St. Agnes. She was there so often that they gave her a job.

In 2005, she came to the University of Maryland as the American Cancer Society's first patient navigator in the region that stretches from Delaware to Georgia (The ACS and the hospital share her salary). Now there are 30, with more navigators planned.

Today, at 55, Anne McNerney works the sunny cancer treatment room on the hospital's ground floor as if she is greeting old friends. And that's how many have come to think of her. She knows what illnesses they have. She knows their prognoses. She knows about their children, their troubled marriages.

Sometimes their needs are simple: McNerney points them toward support groups, explains counseling options, finds help to pay for parking if the patient is strapped for cash. She might offer a list of outside organizations that can help with bigger expenses.

Sometimes their needs are more complicated.

McNerney recalls a patient coming off radiation therapy last year who had no more treatment options. The only possibility was the clinical trial of an experimental drug. But to qualify, he was required to have a telephone.

The man's illness had left him destitute. He could no longer work. He was renting a room in someone else's home. He couldn't afford a phone.

A nurse called McNerney. Could she find him a cell phone? McNerney wasn't sure. She made some calls, and eventually the hospital's social work department got him a prepaid cell phone.

She recently saw the man. "He's really fine now," she marveled. "He got this phone and it turned it around for him."

The hospital's treatment room is lined with individual cubicles with comfortable chairs and television sets and curtains that can be drawn for privacy as patients settle in for what can be hours of chemotherapy.

On a recent day, McNerney spotted Oliver Johnson and gave his shoulder a little squeeze. A year ago, Johnson, 53, had his cancerous left lung removed. He had chemotherapy, but a few weeks ago, the cancer came back. This time in his lymph nodes.

He recalled his conversations with McNerney. "She had cancer, too. She can talk with me about my feelings because she's been there," the Bowie man said. "You can get some bad feelings with cancer. I've had days I thought I wouldn't make it. She warned me I would, so when I had them, I thought about her.

"She don't talk from a book. She talks from the heart."

The purpose of the navigator program is to remove as many barriers to treatment as possible, said Dr. Patricia Hoge, who oversees the program for the South Atlantic Division of the American Cancer Society. The ACS is evaluating the program to see if it actually improves outcomes.

"It's like being plunged into an abyss when you hear the words, 'You've got cancer,'" Hoge said. "Sometimes the person just gets tired or frustrated or angry and their ... reaction is, 'I'm not going to do this anymore,' and they just need somebody to talk to."

That's where someone like McNerney comes in.

"All of us, when we go in to see a physician, we know they have limited time, they have other sick people they need to see," Hoge said. "The navigators are not on a schedule of having to see another patient in 10 minutes. They can take a couple of minutes or a couple of hours, and that's OK."

Anne McNerney's infectious personality screams triumph. "People just need to see there's life after cancer - good life," McNerney said.

They call her a navigator, "which sounds like an SUV," she quips. But she has a different view.

"I almost wish we could call ourselves 'hope coaches,'" she said. "They might tell you you have a 90 percent chance of making it. You don't care. You've been diagnosed. You think you're in the 10 percent. That's your mind frame," she said.

She also reminds patients that they are not the statistics. Statistics are the people "who went before you."

"I think everyone has the opportunity to get better," she said.

McNerney may be the only nonmedical person a patient meets going through treatment - a sympathetic ear and someone who can talk through things as a peer. When a patient has qualms about getting a port - a disc inserted under the skin to make chemotherapy easier - she shows the scar on her chest from her port, and explains why it might be a good idea to get one.

"It's tremendous comfort and reassurance to meet a survivor, especially someone like Anne, who looks as though she's never been sick a day in her life," said Dr. Kevin J. Cullen, the director of the University of Maryland's Greenebaum Cancer Center.

Raymond Conway Jr., 51, had a grapefruit-sized tumor removed last year from his chest cavity. The District Heights man said McNerney talks to him the way no one else can because she, too, has battled cancer. And won.

"You can have compassion. You can have love in your heart. But if you haven't been there, it's hard to help," he said. "People mean well, but there's nothing like talking to someone who knows."

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