In the twilight netherworld of anesthesia, the young woman drifts, unaware for the moment of the pain flashing across the gastroenterologist's face. Years of misdiagnoses of the young woman's stomach and bowel discomfort, of assumptions that she was simply too young to be seriously ill, have brought her here, just days after she collapsed inside her front door from exhaustion. She implored her primary care physician to please, please, send her for tests usually reserved for women thirty years her senior. Now, looking from the video monitor down at her body, curled in a fetal position that speaks of innocence and vulnerability, the gastroenterologist realizes the horrible truth.

Moments later, the woman is awakened by a gentle pressure on her leg. She opens her eyes, and what she sees is not what she expects. As she scans the faces of her mother and her fiancé, there are no smiles, no "welcome back." There is only silence and redrimmed stares. She suddenly becomes aware of the doctor's hand resting lightly on her ankle. He gives it a light squeeze, and she looks at his face. His eyes are filled with tears.

"Eden, I'm so sorry," whispers the physician. "You have cancer."

In this city, she's far from alone.



Baltimore's cancer problem is nothing short of horrific. According to figures from the National Cancer Institute and the Maryland Department of Health and Mental Hygiene, the city's cancer death rate is among the highest in the country—roughly 30 percent above the national average—and more than 70 percent higher than upscale Montgomery County. Pollution, poor access to health care, healthadverse behaviors, lack of education, the environmental legacy of our industrial heritage: The reasons and theories abound as to why we're as much Cancer City as Charm City.

That's the bad news. If there's a counterbalance, it's that, for the more than three thousand Baltimoreans expected to be diagnosed with cancer this year, the majority—almost twothirds, according to national trends—will survive for at least five years. The numbers vary by disease site, but skin, breast, and prostate cancer all have five-year survival rates of around 90 percent. Some cancer patients will live much longer. A 2002 Lancet report showed twenty-year survival rates for melanoma, prostate, and thyroid cancer were greater than 80 percent, and more than 50 percent for colon, breast, and cervical cancer. (Those diagnosed early generally fared best.) Put another way, cancer is rapidly turning from a fatal illness not discussed in polite company into, in many cases, a chronic condition along the lines of asthma, diabetes, and hypertension.

While improvements in screening, medications, training, and surgical techniques have all played a role in this tidal shift, that's only part of the story. A growing body of scientific evidence suggests that, when it comes to dealing with cancer, patients themselves can exert a level of control, improving both the quality and possibly the quantity of their lives—if they have the right tools and if they treat more than just the cancer.

This was underscored by a groundbreaking 2007 report from the Institute of Medicine, a nongovernmental arm of the National Academy of Sciences. The institute didn't mince words when it called for doctors and hospitals to offer, for lack of a better word, holistic cancer care. "The failure to address the very real psychosocial health needs of patients and their caregivers is a failure to effectively treat that patient's cancer, plain and simple," the authors wrote.

They used depression and anxiety—common reactions to a cancer diagnosis—as examples of conditions that, when missed by oncologists, can undo medical treatments. "These mental health problems can … decrease patients' motivation to complete treatment [and] change unhealthy practices such as smoking, and decrease their ability to cope with the demands of a rigorous treatment process," they wrote, adding, "There is growing evidence that stress can directly interfere with the working of the body's immune system [already compromised by chemo and radiation] and other functions."

The institute's report gave the oncology business a badly needed wakeup call, but the burden of finding help for many problems related to cancer still falls largely on the patient. "Surgeons and oncologists probably would like to advocate for their patients, but they're so focused on their specialty that they often don't see the patient's big picture," admits a Johns Hopkins oncology nurse. "The patient can fall through the cracks if they don't advocate for themselves."

The idea of speaking up when one's entire body and spirit is being beaten down might seem untenable, but given a little forethought and motivation, cancer patients can build a support team, understand the longterm consequences of treatments, and create a structure to help them not only survive but also thrive.

After all, all that's at stake is your life.




Eden Stotsky long suspected that cancer was a battle she was destined to fight. Though it was rarely discussed during her Randallstown upbringing, her father had survived Hodgkin's when he was in his 20s, and, as a teenager, Eden accompanied her mother during  early treatments for breast cancer. Lynda Stotsky would survive, but when she required additional surgery a few years later, Eden sensed that eventually her own time would come.

She just didn't think it would happen less than a year later, at the tender age of 26. During surgery after the colonoscopy, doctors removed a tumor the size of an orange. It was Stage III rectal cancer, advanced to the point that it had spread to her lymph nodes. By that point, Stotsky had endured years of bloating and cramps, of being mistakenly told that her stomach problems were being caused by everything from sucking too much air from the straw of her everpresent water bottle to lactose intolerance. She was determined that, when it came to her cancer, whatever she could control, she would control.

Her personal advocacy process began with a massive information search. She arrived at her first meeting with Hopkins surgeon Michael Choti armed with dozens of questions. Her second act was choosing, with her doctor's input, a surgery that preserved her fertility by permanently moving her ovaries outside the radiation field that would later attack the tumor site.

The surgery appeared to be a success, but the days that followed filled Stotsky with a terror that was nearly superstitious in nature—a feeling that, should she be left alone for even a short period of time, something horrible would happen. But rather than suffering in silence, Stotsky made her needs known. As a result, during the week she was in the hospital recovering, one of her family members was always by her bedside. She was in survival mode, pure and simple, and it was taking her to a place the usually selfreliant Stotsky had never gone: reaching out to others so she could find a moment's peace.


As Stotsky settled into her chemotherapy regime—five successive daily sessions followed by three weeks off to allow her body to recover—she discovered the physical challenges weren't nearly as demanding as her fluctuating emotional state. She designed an elaborate schedule, signing up a rotating cast of family and friends who accompanied her to each roughly threehour-long chemo session. She also began putting into place the tools that eventually became the mainstay of her cancer survivorship: an audiotape containing a "guided imagery" exercise in which a soothing female voice asked her to imagine an army of tiny chemo warriors conquering cancer cells and a support group for young cancer patients. "I had to find others with cancer who were young," she says. "Without them, honestly, I don't know where my mind would have gone."

But her continued advocacy came at a steep price. Following her six months of treatment, Stotsky would need quarterly checkups to ensure she was still cancerfree. She had complete faith in her doctor. But prior to her diagnosis, she and her fiancé had discussed moving to Arizona. It was a dream of his, one they put on hold when cancer took over their lives. "He said he understood," Stotsky says. "But he didn't, not really."

They were married just after her treatment, but the westward conversation continued. Eventually Stotsky faced a choice: Her health or her marriage.




Fortunately, unlike in 1997 when Eden Stotsky was first diagnosed, people with cancer no longer have to negotiate the travails of their disease by the seat of their pants. A growing number of hospitals, particularly academic medical centers, are offering patient advocates—often called navigators or educators—as point people to help newly diagnosed patients figure out everything from the potential side effects of their chemo treatments to how to get discounted parking. Many are nurses or social workers who have firsthand experience as cancer survivors.

Registered nurse Lillie Shockney battled breast cancer twice in the 1990s; now, as a patient educator, she's often the first person breast cancer patients at Johns Hopkins sit down with after they've been diagnosed. She shares with them the treatments she went through, along with her own fears and concerns. "I'm reassurance that treatment is doable," Shockney says. "I've been told by my patients that I'm a walking vision of hope: ‘If I can look like you fifteen years from now, I'll be very happy.' I tell them, ‘That's the goal we share.'"

A good patient navigator helps educate patients and coordinate complex and often disjointed medical care. "It used to be you could go to one place and all your care would happen there," Shockney says. "Today, you may be having your screening mammogram at one place, and if they see something they'll send you to another mammography facility for the biopsy. Then a third place for the surgery, a fourth place to receive your chemotherapy, and a fifth place to receive your radiation therapy. Somebody has to pull that all together; it's an awful lot for someone to navigate and even decipher alone."

Shockney says that by helping patients figure out where to go and when, and "nudging" them with regular communication to help them comply with treatments, she helps improve their outcomes. Research backs her up. According to the National Cancer Institute, patient navigators brought on board soon after a diagnosis "can help steer patients and their families to appropriate care and treatment that could dramatically improve patients' chances of getting the best care and have an opportunity to live with cancer as a manageable disease."

click to enlarge

• David Rehor
• Helping hand: Lillie Shockney battled breast cancer twice in the 1990s; now, as a patient educator, she's often the first person breast cancer patients at Johns Hopkins sit down with after they've been diagnosed.

Helping hand: Lillie Shockney battled breast cancer twice in the 1990s; now, as a patient educator, she's often the first person breast cancer patients at Johns Hopkins sit down with after they've been diagnosed. | photo by David Rehor


Smith Farm Center for Healing and the Arts, an advocacy organization in Washington, D.C., which operates independently of any hospital, offers a sort of educational cancer boot camp for patients. "One metaphor we use is when somebody is diagnosed with cancer it's like being dropped out of a plane into enemy territory without the benefit of compass, training, or any tools," says executive director Shanti Norris. "We would never think of not training the physicians and nurses who are working with people with cancer, but we don't often think about how you train the patient, and they need to have a whole set of skills."

Initially those choices may include deciding which treatment is best, but they can quickly spread to healthsupportive behaviors. Massage, nutrition, yoga, Chinese medicine, and acupuncture can improve quality of life and, perhaps, survivorship. Ideally, patients want alternative practitioners who will talk with their doctors. "You must be in contact with your physicans about using herbs," advises clinical herbalist Sara Eisenberg of the Ruscombe Community Health Center. Complementary approaches, notably the use of herbs and, in rarer cases, nutritional supplements, can have a powerful impact on conventional treatments.

What these alternatives offer are everything from science—the NIH cites acupuncture, for example, as being potentially effective with nausea associated with chemotherapy and surgery—to additional opportunities for education in a nonthreatening setting. Support groups, once only a one-size-fits-all option, are now often gender-, age-, and cancer-specific, right down to the stage of a disease. "Each group has very different issues and a very different emotional journey," notes licensed social worker Tom Large, co-founder of HopeWell Cancer Support in Lutherville.

And there is spiritual nourishment as well. Cancer can crush the body and the will. Sometimes restoring both comes down to nothing more than an act of connection, of a patient actively reaching out to a therapist or practitioner who, more than anything else, is willing to listen. Can science measure this effect? Sometime, yes; sometimes, no. But patients always can. For acupuncturist Kaiya Larson of the Tai Sophia Institute in Laurel, the twentyor-so minutes she spends listening to each patient's issues before a treatment is as important as the treatment itself. "If you feel heard, and you feel less fearful—and you can talk to someone that's not your family, who's scared along with you that you're going to die—and you feel understood and braver and healthier and stronger, that absolutely, 100 percent affects your physiology."

And, just perhaps, the desire to fight on.




Now 38, the confidant woman striding across the lobby of the Daily Grind in Hopkins Broadway Research Building wears a white lab coat announcing to the world that she's gained both a nursing degree and a new husband. Stitched in blue script over her left breast pocket is "Eden StotskyHimelfarb, B.S.N., R.N." Now more than twelve years removed from her cancer diagnosis, she's taken the patient advocacy that marked her own personal battle and turned it into a career.

At her first followup appointment post-treatment, Stotsky's surgeon, Michael Choti, asked her if she'd be interested in becoming a patient educator. Impressed with the activism she displayed in her own case, Choti wanted to create a patient educator's position for his colon cancer center, someone who understood the disease on both a personal and professional level. "It was obvious to me she'd be outstanding in the role," Choti says. "Her personality, her positive outlook, that optimism that comes across would be so reassuring to patients."

At first Stotsky gently said no, but Choti persisted. Each time she saw him for checkups over the next two years, he'd greet her the same way: "Are you ready? Are you ready??"

One day the answer became yes, and for the next three years she volunteered to collect data to prove to Hopkins' management that budgeting for a patient educator would improve care and save money. The position was funded in 2002, and Stotsky almost immediately realized that her degree in public affairs could go only so far in her new role. "I knew I had to get some medical or health care degrees," she says. "Otherwise I wasn't really going to be able to provide care for these patients."
Stotsky began her prerequisites for nursing school in 2004, completing her R.N. education last year, all while working fulltime for Choti. Today she provides the same kind of compassionate care she says she was fortunate enough to receive from friends and family during her illness.



She often looks into the faces of her patients and sees herself. She's forever aware of the toll cancer can take—her father died in 2005 of heart disease related to his longago cancer radiation treatments—and she remains vigilant, aware that, as a survivor, she's at higher risk for cancer than the general population. She watches what she eats, tries to work out ("I'm not so good with that one," she laughs), and recently added acupuncture to her arsenal, both as a way to increase her chances of successful in-vitro fertilization (there's some evidence to support this) and to relieve the arthritic hip pain caused by her radiation treatments.

Her wellness regime also includes occasionally seeing a therapist—as well as a masseuse and a manicurist and stylist. "I'm not rich, I don't make a lot, but you have to budget for it," she says, pride rising in her voice. "After what I've been through, I'm entitled to take care of myself. Aren't I worth it?"

That's the kind of confidence she's trying to promote in her patients. Cancer has redefined Eden StotskyHimelfarb. It's not something she would wish on her worst enemy, but if there's one positive that's come out of it—and it's a big one—it's that she can now show others how to speak up for themselves, to move from the utter devastation of diagnosis to a place of hope and promise.

When she feels it's appropriate, she doesn't hesitate to share her story with others. And sometimes, it's the lifeline they're desperate for. "I saw a patient today who had just been diagnosed and who was absolutely terrified. I went in for a few minutes and talked to him, told him, ‘I've been in your shoes. I had rectal cancer when I was 26. I'm 38 now, and I'm doing great. You are going to get through!'"

The odds say that with her help, and his own, he will.

—Mat Edelson's most recent book, The CancerFighting Kitchen, was voted "Best Health and Special Diet Cookbook" and the "People's Choice" best American cookbook by the International Association of Culinary Professionals. Eden Stotsky-Himelfarb wrote the foreword for Edelson's first cookbook for people with cancer, co-authored with Rebecca Katz, One Bite at a Time.