When it comes to having cancer, Dara Barr says, there are two struggles every patient faces. The physical one is obvious: traveling back and forth to the hospital, undergoing sometimes-debilitating surgeries, and dealing with the effects of the disease—and the side-effects of treatment. The emotional challenge is less visible: grappling with the host of feelings a diagnosis can stir up, finding a way to stay positive when your mind veers toward the worse-case scenario, and accepting the “new normal” cancer can bring.
By Carolyn Sayre Photos by Tommy Leonardi
FOR BARR AND MANY other patients, the emotional experience of cancer can be as daunting as the physical one. “Living with cancer is a rollercoaster ride—I have to be mentally prepared for anything,” says Barr, who was diagnosed with fallopian tube cancer in 2007 and has experienced two recurrences. “It can be just as challenging mentally as it is physically.”
Patients who, like Barr, are living with cancer may experience an array of competing emotions during their cancer journey, from sadness and fear to denial and anger, sometimes even clarity or acceptance. Many find themselves in shock and disbelief when they are first diagnosed. During treatment, patients may find themselves overwhelmed by anxiety, fear, and depression. Others focus so much on the physical battle that they do not let their emotions surface until later. Feelings like anger and frustration may become most powerful during survivorship.
“It is a very emotional journey,” says scientist and psychologist Suzanne Miller, director of the psychosocial and behavioral medicine program at Fox Chase. “For most people, hearing the word ‘cancer’ is absolutely terrifying and comes wrapped with a lot of uncertainty and confusion.”
The Center is working to develop approaches to cancer care that treat patients based on their psychological profile as well as their physical one. Research by Miller, who studies patient responses to chronic illnesses like cancer, shows that most patients can be categorized either as “blunters”—who tend to downplay their condition and are less compliant with treatment—or “monitors,” who are hypervigilant about their health and prone to worry. Knowing how patients tend to react can help physicians tailor their discussions and treatment appropriately, Miller says.
“Patients benefit from us paying attention to them as a whole person,” says Luanne Chynoweth, director of the Center’s social work services department. “Knowing that someone cares about their thoughts can empower a patient to be hopeful and have a big impact on survivorship. …Every patient is different and needs a different kind of attention.”
‘CANCER HAPPENS TO OTHER PEOPLE’
Lael Swank, a breast cancer patient who drove the two hours to Fox Chase in Philadelphia from her home in northeastern Pennsylvania for nearly a year—first for chemotherapy, then for radiation—says she has experienced every possible emotion since she first heard the word “cancer” applied to her in March 2010.
“I have felt it all,” says the mother of two. “I have been in denial—I was convinced they mixed up my pathology with someone else’s. I was afraid of dying and scared of what would happen to my children. I was anxious and woke up in the middle of the night with panic attacks. I was angry. I was frustrated.”
When patients are diagnosed, they often say they feel like they are dreaming or living someone else’s life. Daniel Wolfson, a kidney cancer survivor, couldn’t believe that it was happening to him. “Cancer happens to other people, not to me,” he remembers thinking. “I never smoked a cigarette or drank. I ran marathons. I was the guy who did everything right.” Wolfson was told he had six months to live by the doctor he consulted in New York City before he came to the Center for treatment. That was nine years ago. “Fox Chase surgeons saved my life,” he says.
Other patients turn their disbelief inward and blame themselves. Thoughts like ‘I shouldn’t have smoked,’ ‘Why did I delay that screening for so long?’ or ‘My life has been too stressful,’ are typical. “Self blame and shame are highly common emotions,” Miller says. “People start wracking their brains, examining their memories of their lives to see what they did wrong.”
Many people also report feeling overwhelmed by the new information coming their way: lab results, biopsy results, different types of scans and treatments or surgical options. Barr says she didn’t know where to start when she was first diagnosed. In cases like hers, a family member often steps in and helps with tasks such as doing research and scheduling appointments.
“It really runs the gamut,” Chynoweth says. “Some people have a way of just marching forward with things and don’t tune into their feelings as much. Others are so overwhelmed that they almost come to a standstill.”
THE KNOWN AND THE UNKNOWN
Chynoweth says it is crucial that patients get help coping with their emotions—in particular feelings like fear, anxiety, and depression, which often come to the surface when patients are going through treatment or dealing with a relapse.
“I remember worrying about what chemo would be like,” Barr says, before her first treatment. “I wondered how I would function, whether I would feel sick—and I dreaded the thought of being bald. It was scary not knowing what to expect.”
When her cancer recurred in 2009 after two years of remission, Barr was overwhelmed with a different kind of fear—the fear of dying. “I knew the drills at the hospitals, the tests and the meds,” she says. “It wasn’t the unknown that scared me anymore, but rather the fact that I knew my cancer was treatable but not curable—my doctor says five years is generous.” She recalls pulling the blanket of her hospital bed over her head and sobbing. “I’m scared to be helpless and in pain … I don’t want to be a victim in those final days as people watch over me.”
When someone you know has cancer
- Take your cues from the person with cancer. Respect her need to share–or for privacy.
- Respect her decisions about treatment, even if you disagree.
- Offer to help in concrete, specific ways.
- Be open with your feelings, such as by saying, “I’m not sure what to say, but I want you to know I care.
- Listen without feeling compelled to respond. Sometimes a caring listener is what the person needs most.
- Offer advice the person hasn’t asked for.
- Avoid talking about the illness–or talk about it constantly. The person might enjoy conversations that don’t involve cancer.
- Comment on changes in the person’s appearance, such as weight loss, which may make her self-conscious.
- Be afraid to hug or touch the person if doing so was part of your relationship before the illness.
- Say, “I can imagine how you must feel.” In reality, you can’t.
Source: the American Cancer Society.
For some, emotions come to the surface when treatment is over. Swank—whose tumor was successfully removed in May 2010—says her fears emerge when everything is quiet, when she isn’t running to the hospital for chemo or talking on the phone with the doctor’s office. Though her physician is optimistic about her progress, she sometimes wakes up in the middle of the night in a state of panic.
“In the beginning, people are so busy getting second opinions and deciding on treatments,” Miller says. “For many, it is when the treatment is over and they have a minute to think that the feelings come flooding in.”
Sometimes that overriding emotion is anger. “For many, there is a feeling of unfairness,” Chynoweth says. “Maybe the person has already had a lot of hardships or they feel they are too young.” Such was the case with Swank: As the one-year anniversary of her diagnosis approached, she says, she was “so mad” that she had lost a year of her life to cancer. “I am only 39 and my body has changed irreversibly,” she says. “What did I do wrong to deserve this?”
Thankfully, Swank says, Fox Chase has the resources not only to treat her advanced cancer but also to help her deal with its psychological impact. In individual and group counseling sessions, social workers teach relaxation techniques and visualization exercises to help patients manage stress and anxiety. Social workers and psychiatrists also offer individual counseling for patients and their families. As Chynoweth explains it, “We act as a sounding board for people.” Swank says her counselor—who happens to be Chynoweth—is like her angel. “Whenever I feel crazy or out of control, she is there to talk to me,” she says.
Fox Chase’s psychiatric staff also is equipped to evaluate and treat patients suffering from issues like depression, anxiety, sleep disturbances, and substance abuse. “There is a high comorbidity of certain types of cancer with psychiatric problems,” explains Karen Mechanic, director of psychiatry, who treats patients with medication and a form of talk therapy known as cognitive behavioral therapy. “It is important to manage these symptoms because they can become disabling and interfere with treatment.”
Support groups run by social workers and nurses and organized by cancer type are also available, along with programs such as Kids Night Out, a group designed to help the children of cancer patients process their experience.
Even after three surgeries and several rounds of chemo, Wolfson says the psychological aspect of his experience with cancer has been 85 percent of the battle. Throughout the long and difficult fight, Wolfson says: “I wouldn’t accept anything negative that the doctors were saying.” Instead, he did guided imagery meditation every day during his treatment. “I kept my running shoes at the end of my bed and kept saying over and over again, ‘I am going to run again.’” He kept his word. In May 2008, Wolfson completed the 10-mile Broad Street Run in Philadelphia, and he completed a half-marathon in September 2011. His cancer remains in remission.
AN ONGOING JOURNEY
As time passes, many patients experience a sense of contentment or clarity connected to their diagnosis. “It seems odd to talk about positive emotions,” Miller says. “But towards the end of the physical fight we see a lot of people who are able to reframe what has happened to them. They say they have learned something and want to give back.”
Barr is one of those people. She knows her time is limited, but her years of hardship have shifted her focus to helping others as best she can. “I am not the type to sit back and wait to see what happens,” she says. The mother of three boys spends her time volunteering, reaching out to other cancer patients, taking her kids to ice hockey practice, and going on weekly date nights with her husband. “I am very hopeful, but I am also realistic,” she says. “If I lose that, then that, to me, is denial.”
Physically, Barr has seen it all, from surgeries to chemotherapy, and now is enrolled in a clinical trial to which she has responded well. Emotionally, her journey is ongoing. She says that while she still feels anxious and overwhelmed sometimes—such as at holidays, or when she goes for tests—she is mostly concerned for her family and how they will manage without her.
“Every day brings a new challenge,” she says. “Sure, I have sick-as-a-dog symptoms and side effects, but at this stage of the game it is the emotional experience that is the hardest—all I can think about is my family and how they will go on. It takes time to feel grounded and have a clear head, but I am confident I am finding that peace. This is our journey and we are going to deal with it as best we can.”
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