Sorting Through the Puzzle of Emotions, Part 1Last updated: Apr 18, 2016
Lyza Lyon knows firsthand that the emotional journey of a cancer diagnosis can be just as devastating as the physical one. A little over a year ago, the 43-year-old mother of two found a lump under her armpit. A few weeks later, she was diagnosed with breast cancer.
“This can’t be happening to me, can it?” she thought. “I was dumbfounded and unprepared. I am a planner so I suddenly felt out of control and helpless over my own health.”
In the year that followed, Ms. Lyon experienced a range of emotions including denial, worry, fear, grief, sadness, and anger. Studies show that nearly a third of patients with cancer meet the criteria for a mental disorder, such as anxiety or depression; and many more suffer from certain symptoms of these illnesses. As a result, Summit Medical Group has three Behavioral Health Centers that help patients with any chronic illness manage their experience from diagnosis to treatment and eventually survivorship. Located at the Berkeley Heights, Springfield, and Livingston locations, therapists are available for individual counseling and three on-site support groups are offered for breast cancer patients.
“No one gets out of a cancer diagnosis without having some emotional distress,” says Elizabeth Nikol, MA, MSW, LCSW, ACT, Senior Integrated Behavioral Health Clinician, at Summit Medical Group, who has counseled hundreds of patients with cancer. “It is important that people do not suffer in silence. Patients are often ashamed because they think they should be able to move on from their emotions, but these feelings are completely normal. If they are willing to share how they feel with just one person it can make all the difference.”
The Diagnosis: Being Overcome with Shock and Anxiety
Carol Boyer, RN, APN-C, AOCNS, CN-BP, Clinical Program Manager and Certified Breast Nurse Navigator, likes to describe the emotional experience of cancer as an unfinished jigsaw puzzle. When patients are first diagnosed, none of the pieces fit together. As a result, feelings of anxiety can become overwhelming. “It is hardest for patients in the beginning because they do not have all the information. They worry about everything,” she says.
Perhaps the biggest concern that races through a patient’s mind is the fear of dying. “When a doctor says you have an illness that could kill you the initial shock is the same as being held up by a gunman,” describes Ms. Nikol. “Early on, there may also be a sense of denial. This can’t be happening to me—I exercise, I eat a healthy diet, and I take vitamins.” As a result, nurse navigators and behavioral therapists try to educate patients about their disease and reassure them about their prognosis.
During her treatment, Ms. Lyon recalls taking a last minute trip into New York City with her 7-year-old daughter to see a Broadway show and the Christmas tree. “I remember looking at the lights like I was never going to see it again,” she says.
Carrie Decker, who was diagnosed with breast cancer two years ago at the age of 41, says her experience was incredibly traumatic. “You are thrown into this whirlwind and researching on the Internet is not helpful. Instead, I decided to put my full faith in my physicians to come up with a solution, and I do not regret it at all.”
Once patients have a plan, Ms. Boyer says the pieces of the puzzle begin to slowly come together. “When we know more about the characteristics of the cancer they have, what surgery they are eligible for, and what the treatment plan is, we see patients start to relax a little because they know what is going to happen,” she explains.
Focusing on Treatment: A Pause from Emotions
When surgery and treatment begin, feelings are often put on hold for a period of time, as patients become soldiers with a battle to fight. “With two little ones watching my every move, I went into fight mode,” explains Ms. Lyon. “I prepared my kids to expect the super hero I would need to become to fight the evil villain (cancer) who took over my cells. I assured them I would win, but sometimes it may not look that way.”
Many patients actually experience the most intense emotions when their surgery and treatment is over. “They feel bad because they think they should be happy, but they were actually waiting to fall apart,” explains Ms. Nikol who says this is when most of her patients come in for counseling.
“There were people who said: ‘your done, let’s just move on,’” describes Ms. Decker. “But it was not like I broke my arm. I had a life-threatening situation. For me, the cast is still not off.”
Four months into her treatment at Summit Medical Group’s Breast Care Center. Ms. Lyon said she thought she had lost her inner warrior. “I was so focused on my treatment plan and being strong for my children and family that the reality just hit me,” she describes. “I collapsed into my Mom’s arms and cried and cried. I said, ‘I have cancer, I can’t do this.’ She simply said, ‘you can and you will.’”
Healing the Mind and Body: A Flood of Conflicting Feelings
Patients often describe their experience as a rollercoaster ride because many different emotions come and go. At some point, many people become angry—particularly if the cancer has affected their fertility or appearance, such as hair loss.
“My body was broken. I was an illusion,” describes Ms. Decker who struggled with the changes to her physical appearance after she endured a double mastectomy—a surgical procedure that removes all the breast tissue—and reconstructive plastic surgery. “My mental attachment to being a woman and the fact that my body was forever different was one of the hardest things I had to deal with.”
Feelings of bargaining may also occur as patients try to rationalize their diagnosis. For example, Ms. Nikol says many people make internal deals with themselves or a higher power, such as promising they will never smoke again or use any products that are not natural. These attempts at bargaining are a normal part of the grieving process and may decrease over time.
Survivorship: Traveling Towards Acceptance
As people come to the end of their journey and move from patient to survivor, there is often a sense of acceptance that begins to become palpable. Despite this realization, thoughts of anxiety and fear often resurface throughout their lifetime, particularly when they have follow-up scans or appointments.
For Ms. Decker, cancer will always be the monster in the room. “You can’t see it, but it is always lurking around you. I feel like there could be a day when that monster grabs my feet at the end of my bed and it becomes a reality again.”
One year after her breast cancer surgery and reconstruction, Ms. Lyon celebrated with a trip to Mary’s Place by the Sea—a respite home at the beach for women with cancer—which was recommended by her nurse navigator, Joanne Vasios, RN, CN-BN.
“From the moment I walked into the house I could feel the embrace and love of all the women who had stood there before me,” she recalls. “I am not afraid anymore and I choose every day to live my life—really live—and be in the present. It is over. I did it. I survived. Now, I can be grateful to my body for getting me through my journey. Acceptance.”