CANCER DOESN’T ALWAYS HAVE to be about the negativity that surrounds it.

There are many milestones to celebrate as a survivor, such as completion of chemotherapy or radiation, the first doctor’s visit after treatment, or a cancer-versary. However big or small the milestone, it’s worth a celebration.

The first Sunday in June is designated as National Cancer Survivors Day. On that day this year, I attended the 11th annual 24 Hours in the Canyon bike race. It started with a survivor send-off, when all the bike riders could see whom they were riding for. This part of the weekend was my absolute favorite. In my profession as an oncology nurse, I get so focused on fixing problems that I don’t always take the time to appreciate the little things in life.

As we were enjoying the beauty of Palo Duro Canyon in Amarillo, Texas, and celebrating those beside us, I found myself emotionally overwhelmed. I took a picture of an amazing group of riders, small pediatric survivors in the front row with big smiles on their faces and older survivors in the back with the same big smiles. Some were happy to be in a moment when they were not thinking about treatment. Others were happy to be meeting people who shared their experiences and feeling as though they were not alone.

As I look back at this group picture, I don’t see “cancer.” I see a group of people who have one common thread — the belief that life is more than the cancer that may be shaping it.

If you have the chance, I recommend that you find an event near you that celebrates survival. Take the time to celebrate life.

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There are many milestones to celebrate as a survivor, such as completion of chemotherapy or radiation, the first doctor

Celebrate Life as a Survivor

In January 2010, Christine Pereira of Riverside, Rhode Island, found out she had breast cancer. Eight surgeries later, she is a proud survivor. But fate had more in store for Christine. In 2011, right after her 24-year-old daughter Melissa’s beautiful June wedding, Melissa received a diagnosis of nasopharyngeal cancer, or cancer of the upper throat.

Watching her child deteriorate was one of the most difficult experiences of Christine’s life. In this moving series of narrative poems, Christine describes not her own experience with cancer but what it was like to be the mother of a daughter who had cancer. Happily, Melissa recovered and has now been cancer-free for four years. She and her husband James have two daughters, Kennedy, 3, and Kathryn, 1.

“These poems reflect my journey through Melissa’s long journey,” Christine says. “She is the bravest person I know.”

The diagnosis feels like a knife to my heart

The diagnosis will certainly be the death of me.

The diagnosis. The word is like a cancer.

A mask that bolts her head to the table as

She says it feels like she’s nailed to it

She says she feels like she can’t escape

She rings a bell to acknowledge her success

I hear that bell ringing in my ear still today

People

A mother's journey through her daughter's cancer

Poet Mom

When I was diagnosed with breast cancer in 2015, I was the primary breadwinner for my family and our source of medical insurance. I needed to work throughout my cancer treatment.

Work was also an anchor to the routines and order of my normal life, a source of meaning, self-esteem and social support. I also knew that my insurance costs would rise after treatment. The average annual medical costs are $4,187 higher for female cancer survivors and $3,293 higher for male cancer survivors than for their peers. For all these reasons, I never questioned whether I would work, only how.

My health care team supported my desire to work but provided little informational or practical support. One study indicates that just 1 in 4 people undergoing cancer treatment report receiving work-related advice from a medical provider, although those who did were more likely to return to work afterward.

More than one-third of those patients who receive a cancer diagnosis are of working age, and the majority will return to work sometime after diagnosis or treatment. Some work full time through treatment, while others choose to reduce schedules. The average time away from work is about five months.

Whether and how much a person is able to work depends on diagnosis, treatment and side effects; work tasks; workplace flexibility; and support from supervisors, co-workers, family and friends. Learning about the range of possible outcomes can be reassuring and helpful as you make work decisions.

Learn about national and local employment laws related to medical leave. The Family Medical Leave Act (FMLA), for instance, allows workers at companies with 50 or more employees to take up to 12 weeks of unpaid leave. Employed spouses may also use FMLA leave to care for their family members. And the leave can be taken intermittently, so employees can use this policy to take time off as needed to recover from side effects and still work on the days they feel more like themselves.

Discuss Workplace Factors With Your Health Care Team

Familiarize yourself with your workplace benefits. Can you work from home? Cancer survivors may prefer a break from the constant well-meaning questions about their health and appreciate the privacy if they are adjusting to changes such as hair loss, ostomy bags and mastectomies.

Those with earlier-stage cancers, curative surgeries and no postoperative complications will likely have the easiest time returning to work quickly.

But be sure to discuss your work duties and workplace policies, flexibility and support systems with your health care providers. Survivors returning to work should be aware of lingering fatigue and side effects that may be disruptive to their work.

Even after treatment, medical follow-up continues periodically. Let your providers know your preferences about when you can be contacted at work. Many employees do not have a private space at work to take calls or process news. Some doctors keep track of when their patients prefer to receive calls and can help patients better manage their time and reduce the emotional distress.

When your health team understands your work responsibilities and your preferences regarding work, they can be more successful in helping you navigate your whole cancer journey.

Ginger Hanson, Ph.D., M.S., is an assistant professor at the Johns Hopkins School of Nursing in Baltimore.

Find out what accommodations you are entitled to under the law, and what your employer may offer.

Managing Work-Life Balance After Cancer Treatment

In a moving, 30-minute documentary called “Close to Home: Cancer Survivorship,” now available on YouTube, survivors, caregivers and physicians describe their personal experiences with cancer. They talk about how their lives were affected, challenged and changed, and how they navigated those challenges. The result is a rich tapestry of collected wisdom spoken by those who live it each day.

“Many people with cancer are quietly and completely transformed,” says Rick Boulay, M.D., director of the division of Gynecologic Oncology. Boulay is also director, Cancer Survivorship, Lehigh Valley Health Network Cancer Institute, and the founder of the Catherine Boulay Foundation.

Boulay knows firsthand how cancer can affect one’s entire life. His wife, Julie Bolton, was diagnosed with leukemia nine years ago.

Talking to his patients helped him through it. They shared with him their wisdom of the cancer journey. How to talk to his children. How to ask for and accept help. How to breathe.

“I began to realize that [my patients] knew far more than I about managing a cancer diagnosis,” he said. “I had the degree, but they had the wisdom. I had the books, but they had the practicality.”

And, so, the idea for “Close to Home” was born. The film provided a forum for people to talk about various aspects of their survivorship: caregiving, spirituality, hope and “cancer as a journey.” They share their fears and anxieties. Boulay’s wife, Julie, now a cancer survivor, appears in the film, along with many other cancer survivors who explain how they cope with uncertainty, and how they find the strength to keep going.

A collaborative project between the Catherine Boulay Foundation (named after Boulay’s grandmother), WLVT PBS39, and community partners from the Lehigh Valley, “Close to Home” captures the transformative power of shared stories.

Boulay, a classically trained singer, also co-wrote and recorded a CD of 11 songs as a companion musical collection to the videos. The CD is available from the Catherine Boulay Foundation and may be downloaded from iTunes.

The documentary, “Close to Home: Cancer Survivorship,” aims to educate and inspire people along their journey.

Documentary Features Wisdom from Cancer Survivors

Barbara Andersen, Ph.D., studied the connection between psychological interventions and breast cancer risk. - COURTESY BARBARA ANDERSEN

In 1994, BARBARA ANDERSEN, Ph.D., at The Ohio State University, began a clinical trial that examined stress and immunity in people who have been diagnosed with breast cancer. The goal of the trial was to test the hypothesis that a psychological intervention could reduce the risk of cancer recurrence for women with breast cancer.

The 227 women in the study had stage 2 or 3 breast cancer. Before beginning adjuvant cancer therapy (additional cancer treatment given after the primary treatment to lower the risk of recurrence), they were assessed with psychologic and behavior measures and were randomized to either receive psychologic intervention and assessment or assessment only. The intervention was led by psychologists who conducted small groups with strategies to reduce stress, improve mood, alter health behaviors and maintain adherence to cancer treatment and care.

“We talked about social support, going over family and friends and others in the patient’s life. Body image was discussed as well as health behaviors,” Andersen says. The groups also increased their activity using a walking program, she says. And those who exercised in the past were encouraged to go back to prediagnosis levels.

Patients were also encouraged to adopt low-fat, highfiber diets.

The women had monthly maintenance sessions and set individual goals for themselves. “We would go through them and then revise the goal sheet for the next month, helping people maintain the changes they had achieved.”

In 2009, Andersen published her findings showing that “psychologic interventions, as delivered and studied here, can improve survival.”

After 11 years of follow-up, recurrence was reported in 62 of 212 women and death was reported for 54 of 227.

The survival time for the women in the intervention and assessment arm was significantly lengthened: 3.2 years compared with 1.7 years for those only in the assessment arm. Those who reproduced the trial found a range of reduction in survival time as well as reductions in depression.

Based on the results of the study, clinical adaptation should have easily followed, but it was surprisingly slow to spread. The reason, Andersen says, was the same reason it takes longer for most psychosocial interventions with positive results. “There has been a problem with dissemination with all psychosocial interventions from clinical trials like ours to the community,” she says.

“People are aware of the gap and efforts to address it, but there has not been much funding for dissemination implementation.”

In 2010, Andersen received funds to train 135 mental health professionals from 92 facilities around the country. She called her program, which was the only complementary clinical trial focused on dissemination at the time, Cancer to Health.

“When we train people and they go back home, they are usually met with interest. It is rare when they tell physicians that they say their patients don’t need it. It is more lack of awareness in the medical community that has kept such programs from implementation.”

As of now, the grant funding has ended, but she is following those trained in the program and will continue to encourage their work.

The goal of the trial was to test the hypothesis that a psychological intervention could reduce the risk of cancer recurrence for women with breast cancer.

An Evolution of Complementary Cancer Therapy

If the notion of trying to twist yourself into a pretzel to chant music with incense burning and sweat rolling down your face in a hot yoga room sounds ridiculous, I get you.

When I was bedridden from grueling blood cancer treatments back in 2011, one of the last things I wanted to do was physical yoga practice — and I’m a veteran yoga teacher. But there are good reasons to give yoga a go, especially if you are a cancer survivor.

“Yoga” is an umbrella term, meaning to connect or unite. Yes, it applies to physical practice, but it also refers to additional elements, such as:

These elements together are what I call the wisdom of yoga. Yoga wisdom can help you heal your own mind and spirit. Unlike other practices that are done to you, including acupuncture and massage, the tools of yoga wisdom put you in charge.

First things first. If you want to thrive after cancer, you need to be willing to do some self-care. That’s where Patanjali comes in.

Pa-tan-ja—who?! No, he’s not the newest one-hit wonder on Spotify.

At least 1,700 years ago, someone (or, scholars argue, several someones) in India wrote 195 pearls of wisdom —sutras &mdash; about the eight limbs, or paths, of classical yoga.

These yoga sutras are attributed to the sage, Patanjali. The first two limbs are the Yama and the Niyama. Together these guidelines (five for Yama and five for Niyama) steer us toward living a meaningful, purposeful, good life.

The first Yama, or way to live well, is Ahimsa, whose literal translation from the Sanskrit is “nonviolence.” However, it can refer to much more than that depending on how it is used. Because literal translations of Sanskrit terms do not always embody the full context, I sometimes interpret an ancient concept for our modern lives. When we think of Ahimsa as nonviolence toward others, it’s important to realize that nonviolence starts at home, with ourselves. The key concept from the first Yama boils down to this statement: Be kind, especially to yourself.

The second Niyama from Patanjali’s volume, 

is Santosha, or contentment. When you meditate, set your intention to be content this minute, this hour, this day, this life. Meditation can help you release anxiety and put cancer in the background of your life. 

Meditation is an ancient art. People have meditated for thousands of years, and everyone from Oprah Winfrey to Lady Gaga promotes the peace of mind it brings. Folks who have never tried meditation may believe that it’s just too hard. I’m here to tell you that if you can 1) sit on a cushion on the floor or sit in a chair, and 2) breathe, you can meditate.

If you’re like every other person who is in remission from cancer or living with it, you know that cancer trashes your mind with worry. There are several types of meditation that can help, including:

When an instructor, whether live or recorded, talks you through a meditation, it’s called guided meditation. If you sit, whether on the floor or in a chair, for mindfulness meditation, you focus on your natural breath to clear your mind. For those who are too antsy to stay still, moving meditation, such as mindfully walking, biking, swimming or hiking, is a great option. With breath meditation, you consciously alter your natural breath to help your mind focus and concentrate.

For many people, thoughts of progression, recurrence or a new cancer come on strong right before sleep. They did for me. Meditation can be a wonderful way to calm your mind and help you rest. Calming breath meditation helps your body release tension with each longer exhalation.

Meditation is a gem to have in your treasure chest of self-care. Try different types and see what works for you.

To try calming breath meditation, follow these steps:

Take a seat on a cushion on the floor with your legs crossed or sit on the front edge of a chair with feet flat on the floor.

Root down into your seat as you lengthen up through your spine.

Rest your hands on your thighs and close your eyes.

Inhale deeply through the nose to the count of 2: 1…2….

Exhale fully through the nose from 4 to 1: 4…3…2…1…

Stay with this calming breath or lengthen the exhalation from 8 to 1: 8…7…6…5…4…3…2…1…

Continue meditating on the breath until you feel calm, anywhere from 30 seconds to several minutes.

Complete your final exhalation, return to your natural breath and gently open your eyes.

If, during this exercise, you ever feel lightheaded or dizzy, please immediately return to your natural breath and open your eyes.

Try this every day for a week with a 35-minute goal. Start with a five-minute session and lengthen each day.

The purpose of meditating is not to reach enlightenment the first, fifth, or 100th time out (kudos to you if you do, don’t get me wrong). Instead, the art of meditation is a lesson in trying. You try, you fail, you try, you fail, you try … you feel a moment of utter peace and calm … then your nose itches. Oh well. You try again.

Once you’ve found a meditation type that suits you, dive in. If you have time to brush your teeth, you can fit meditation into your day, so no more excuses! Start meditating every day to develop a good habit.

How long will it take for meditation to stick? It could be two weeks, three weeks or six weeks, depending on which good habit-forming scientist you read. Some days a five-minute session might seem like forever. Other times you may feel as if the moments fly by. Either way, feel good that you’re treating yourself well.

is a cancer "thriver" and yoga teacher who writes and speaks to empower cancer survivors with new ways to live their best lives. She is writing a book about how you can thrive beyond cancer. 

Body

Tap Into the Santosha of Meditation and Release Your Cancer Stress

Karen Albert had never had a massage before she was diagnosed with stage 3B inflammatory breast cancer in 2013.

Today, she regularly visits massage therapists at the Dempsey Center in Lewiston, Maine, to alleviate tightness in her muscles resulting from her bilateral mastectomy. She has come to trust and depend on the therapists who, she says, understand what she has been through more than those who might work at another facility that isn’t designed for cancer patients. Actor Patrick Dempsey and his sister, Mary, founded the Dempsey Center in 2008 in their hometown to honor their mother Amanda, who died in 2014 after almost two decades of battling ovarian cancer. The Dempsey Center provides an integrated approach to cancer prevention, education and support. Albert, 52, considers the Dempsey Center a haven, or, in her words, a “safe place,” where she can find not just physical relief, but mental and emotional respite as well.

Albert says she believes the Dempsey Center programs will help her live longer. “I am moving, I am getting relief from my physical symptoms and my mind is helped with the counseling and meditation. And everything is free.”

A growing number of patients have access to complementary therapies either at their chosen cancer center or in freestanding facilities such as the Dempsey Center. Both those in treatment and survivors have begun taking advantage of the programs to help themselves heal from the effects of treatment and move forward with additional healing options. The Duke Cancer Center Institute, Mayo Clinic, the University of Texas MD Anderson Cancer Center and many other cancer centers have established complementary programs, each bringing their own focus and distinct programs. In addition, there are researchers such as Barbara Andersen, Ph.D., professor of psychology at The Ohio State University, whose clinical trials’ results have shown increased survival for patients with breast cancer taking part in stress reduction treatment.

Albert’s first visit to the Dempsey Center was at the behest of a nurse at Central Maine Medical Center, where she was treated. The nurse encouraged her to take a look at the center while waiting for lab work and doctors’ appointments. She and her husband were greeted by Mary Dempsey, Community Service Coordinator, who showed them around and gave Albert a pillow, beads to keep track of her treatments and information about the evidencebased treatment options offered at the center.

“I was crying,” Albert says, “because I had just gotten my diagnosis and she was wonderful.” She was so exhausted during her first round of treatment when she was still working as an accountant that there was no time or energy for visits, but she did become connected during her second bout of cancer in July 2015. She is currently on her third round of clinical trials.

Adding complementary therapies is about “centering yourself,” she says. “I can tell you that I feel better. I don’t want to be someone who just lies around.”

Studies on massage show her weekly treatment may also have an impact on her body’s ability to fight the cancer by giving her a range of positive outcomes, such as better sleep, better quality of life, mental clarity and alertness. Massage has been shown to alleviate pain, nausea, anxiety and depression.

 Albert has also taken part in the Fit for Life exercise program at the center, in addition to the nutrition and cooking program and the yoga and meditation program. In addition, she meets with a therapist who helps her navigate the emotional stress cancer places on the family. Her caregivers, her sister and daughter have also taken part in center programs, which include therapies in mind and spirit; movement and wellness; nutrition and cooking; support groups, and youth and family programs in addition to education and events.

In the past two decades, the numbers of patients using complementary therapies has increased significantly. Complementary therapies are not to be confused with alternative treatments, which replace standard therapies. Nor are they to be seen as something only to be used in treatment as most represent a new way of living when treatment has ended, one that will keep their body healthy as they recover and into the future.

Today, the use of music, acupuncture, yoga, touch therapies and other complementary therapies is seen as a valuable addition to patients’ treatments as the medical community has recognized the need to focus on the whole person and their quality of life. The goal for many of those running such programs and the medical professionals who have come to rely on them is integrative therapy, which means combining standard and complementary therapies to treat the whole person from the day of diagnosis onward for the rest of their lives.

Across the country, cancer centers are adding complementary options either onsite or through free-standing options, such as at the Dempsey Center. The Cancer Support Community, which began as Gilda’s Club in the ‘90s, now has 170 international locations and 47 health care affiliations. Each center has a variety of support groups available to survivors in addition to programs similar to those offered at the Dempsey Center.

At Sutter Health Memorial Medical Center in Modesto, California, David Adkins, M.D., who serves as medical director of community outreach for cancer services, has been working to build their Cancer Complementary Therapy Program for 12 years. “We are evolving and currently don’t have an integrated cancer program. A large part of our current presence is through our community outreach and Complementary Therapy Program that have been very strong. There is a conscious effort with Sutter to bring together such community services with an integrated cancer program. In the next few years, we will have a much bigger presence in the community.”

Adkins says that strong support from the hospital and its foundation have been instrumental in promoting the complementary therapies and have put money toward the program, which now offers art, photography, writing, cycling, gardening, movement, music, strength and fitness for cancer survivors, and special educational programs, such as speakers on a wide variety of topics. The program invites all those touched by cancer, no matter where they were treated.

Adkins’ immediate challenge was coming up with programs that could be started during treatment that would not conflict with direct cancer therapy, programs that would focus on the psychosocial. Aside from music therapy for patients in the oncology unit and touch therapy in radiation oncology, the programs are held at other locations in the city, such as a college campus or art gallery. “Our complementary approach is to help in the more subjective area of having cancer and getting through it day-to-day,” he says. In addition, Adkins says, a local college did a study to explore the value of their services for patients and caregivers and found the greatest positive impact was for the caregivers, who Adkins says will be getting more attention in the future.

Lori participates in therapeutic art classes at the Sutter Health Memorial Medical Center

Lori Shutler found out about Sutter’s programs accidentally when she attended the wedding of a survivor friend at an art gallery in Modesto where the center held art classes. “She told me she had signed us up for the art class,” says Shutler, who was a first-grade teacher and almost finished with her Master’s degree when she was diagnosed with stage 4 breast cancer in 2009. She was out of work for a year, stopped her college classes and was forced to return to teaching so she would have insurance.

Shutler’s commitment to, and emotional dependence on, the Sutter classes in art, restorative yoga and Pilates have even impacted where she lives. She decided not to move out of the area because her classes are such an important part of her life and well-being. “I don’t know how to put into words how impactful the complementary therapy classes are for me and for others,” she said. “We are so nurturing of each other, sharing the ups and downs of our journeys.” People bring in home-grown produce to share, she says, adding to an already family-like atmosphere where being bald or forgetting words is no big deal. “The classes are our support group. I don’t know where I would be without them.”

Studies conducted in the past five years show the varying attitudes of oncologists toward complementary therapies. Most of these oncologists see them as an important service despite the fact that “their knowledge of the subject is often limited,” according to the journal, Supportive Care in Cancer.

The lack of standards, training and even basic definitions has left physicians with few guidelines about which complementary therapies they can recommend and how to find trained therapists. Albert’s oncologist quizzes her at each appointment about the programs she has been involved in at the Dempsey Center, but it is all positive, she says.

Just as physicians reach out to learn more about complementary therapies for their patients, right now, patients across the country, for the most part, have to determine which therapies would work for them and their particular cancer. Many physicians need more training on treatment options as well as on education and communication techniques to use with patients. It is an ongoing conundrum that researchers, patients and physicians are continually facing.

Nonmedical treatments offering physical and psychosocial relief are gaining respect in the medical community.

Fall 2017 | Heal