Establishing a Safe Harbor for Survivors

Jean Lehmann of Fort Collins, Colorado, was looking forward to the date of her last chemotherapy treatment. She hoped that would mark the end of her breast cancer experience, and she could move on with her life.

Nothing could have been further from what happened.

The last treatment was the hardest, leaving Lehmann feeling sicker than ever before. But, she discovered, there was a limit to the post-chemotherapy support she would get from her medical doctors. “I had amazing health care, but it comes to an end,” Lehmann says. “The doctors have done what they can do. I first had this sense that I’m going to be done, and I’m going to be well, and I’m going to be me again — but that’s not always the case. I realized, if I am going to try to return to who I am — physically, mentally, spiritually, intellectually — I have to work on this.”

But how?

A friend recommended a free support group called FIERCE: Functional & Fit, Independent, Energized, Restored, Confident & Empowered, led by Alene Nitzky, Ph.D., RN, OCN. An oncology nurse, Nitzky is also an exercise trainer certified by the American College of Sports Medicine and the American Cancer Society. She uses her unique blend of expertise to help survivors on the road to wellness.

MORE THAN JUST A SUPPORT GROUP

“People get through treatment and don’t have an idea of how they’re going to feel,” Nitzky says. “They don’t have an idea of what’s realistic for themselves. We talk about what reasonable goals might be. We set some time goals — six months, a year. We talk about being flexible with that.”

FIERCE is no ordinary support group. Members meet in a donated space in a gym, the Raintree Athletic Club in Fort Collins. This appeals to Lehmann, who would rather not spend time in a medical setting now that she has completed treatment. She also appreciates being among survivors who do not dwell on their illness but understand her issues.

“We don’t really talk about having cancer,” Lehmann says. “I want to be Jean first. But I’m with people who — if something comes up — they all get it. Because they’ve been there.”

Over the past three years, the FIERCE program has evolved beyond stretches and exercises to become a tasting menu of fitness techniques. Nitzky brings in speakers to introduce survivors to tai chi, biofeedback, qi gong, Pilates and yoga — each offering a different approach to physical recovery from the effects of cancer or its treatment — as well as a nutritionist to discuss diet.

“People might benefit from talk support groups for a little while, but they need to move on, have some normalcy in their lives and expand their horizons,” Nitzky says. “Our group also helps with the cognitive aspects [of recovery]. Survivors might have brain fog, feel anxious or feel like they’re not thinking clearly. Interaction, exercise and learning new things is so good for them.”

Nitzky takes a holistic perspective, incorporating relaxation techniques and advice on dealing with aftereffects and anxiety. She tries to personalize topics and exercises to the participants, based on their requests and their conditions.

As a certified cancer exercise trainer, Nitzky understands survivors’ specific needs. “For example, if a person has low platelets, you don’t want them to do any impact activities,” she says. “If their immune system is weak, you don’t want them around a lot of other people. If they have lymphedema or they’re at risk for lymphedema, you have to be careful about the kinds of exercises you do, so you don’t trigger that.”

Cancer treatment affects survivors’ abilities, so she considers whether a participant has recently finished radiation or had surgery, for example. She realizes that they may have lost muscle mass or developed anemia after chemotherapy, and their bone marrow may not have recovered. “You have to be careful about how hard people push themselves, because you don’t want to deplete their muscles and their heart of oxygen. You want to make sure they ease into it,” Nitzky says.

Jane Kinney, who is five years past her surgery for stage 4 thyroid cancer, attended the FIERCE support group and found that expertise valuable. Nitzky identified medical issues that arose after Kinney’s surgery, during which 59 lymph nodes were removed. “One of my cheeks would swell way up. The surgeon basically just dismissed it,” Kinney says. “I didn’t know, but it was just lymphedema. Alene was the one who identified it. She knew what it was right away.

HEALTH COACHING

“I also would sometimes have pain all over my body,” Kinney says.” I thought, ‘That’s just the way it is.’ But when I mentioned it to Alene, [she] suggested that I might need more vitamin D. She told me to talk to my doctors, and I did, and they gave me a pretty high dose of vitamin D. Alene made my quality of life so much better.”

FIERCE grew out of Nitzky’s health coaching business, Cancer Harbors, which she established four years ago as a way to use her knowledge and experience to benefit people with cancer. Before striking out on her own, Nitzky had worked as an oncology nurse and, before that, as a personal trainer and exercise educator.

“As a nurse, I was hanging bags of chemo[therapy] most of the time and feeling like I wasn’t really using all my skills. I was listening to the patients while they were sitting in their chairs, and they have all these questions, all these needs that aren’t being addressed,” she said.

That led to Nitzky’s aha moment: “I have a background in health and wellness, and I had worked with people who had serious health conditions. As I listened, I realized, ‘I would be able to serve their needs. I would be able to work with survivors, because I have a background in recreation, health, exercise and oncology. I can put all this together. It makes sense. Everything in my life has pointed to this.’”

And so Cancer Harbors was born. In this six-month skill-building program for self care, Nitzky coaches survivors to be advocates for their own health. She helps clients understand what to ask providers and encourages them to gain the confidence to ask those questions.

“A lot of people go in to the doctor’s office thinking, ‘The doctor is the expert, and I really don’t know anything; this is like a different language to me,’” Nitzky says. “But really, though the doctor is the expert on medicine, the patients are the experts on themselves. You have to be able to go in with this attitude that, ‘OK, they have something to bring to this relationship, and I have something to bring to this relationship, and our shared purpose is to get me as well as possible.’”

Through the program, survivors improve their cancer literacy, learn about the best online sources for care, and find out what products and services are available. Nitzky also helps survivors set goals, define their values and understand what is most important to them.