Jennifer Haupt

Karen Marchman, RN, OCN, CCRP, of Florida Hospital Cancer Institute in  Orlando, was awarded 

’s 2008 Extraordinary Healer Award for  Oncology Nursing at a ceremony in Philadelphia in May 2008. 

Marchman was one of three finalists selected from an essay contest in which  cancer patients, survivors, and caregivers nominated oncology nurses for  personal and professional qualities including compassion, expertise,  helpfulness, and insight.

 staff reviewed essays that eloquently  testified to the impact oncology nurses have on the physical and emotional  healing experienced during and after cancer treatment.

 about her work as an oncology nurse and its  personal impact.

What do you do as a clinical research nurse?

I work with  patients who are on trial medications for all types of cancer. Once the patient  is on the trial medication, I work with the doctor to oversee treatment,  reviewing the lab work and the dosage with the doctor, and monitoring the  possible side effects. My other main role is that of a patient advocate to  protect their rights as a research patient.

I let them know  I’m here to give them information and answer their questions. A lot of times  they don’t know the questions or are afraid to ask the big ones. So, I open the  door for them. I may say to a young adult, “You probably want to know how this  medication will affect your ability to have children.” Or, I may say to a breast  cancer patient, “You may have questions about what this treatment means for  reconstruction or your long-term self image.” Once I bring up one of the tough  questions, patients generally start opening up about their entire life.

The biggest thing  I’ve learned is perspective—what really matters in life. The important things  are the people you love and the time you put into those relationships. These  patients give me a reality check about mortality and remind me how blessed I  am.

Besides the patients, what makes your job special? 

It’s  tremendously exciting to see some of the advancements made in cancer treatment  during the past decade—whether it’s a cure or something that makes chemo  treatment more tolerable. We’ve taken a disease where a diagnosed patient  survived six months or a year and prolonged that to five years or longer. Even  giving someone an extra six months to spend with their child can mean a lot.

What advice do you give your patients about how to approach living  with cancer? 

I tell patients that we’ll do whatever is medically  possible to treat the disease and make their life as comfor table as possible,  but they need to enjoy whatever they are able to. I won’t lie to them—cancer is  horrible and it’s awful to have to live with it. Together, we’re going to fight  it every way we can. At the same time, life goes on and it can be good.

The essay that nominated you was submitted by Sheila McThenia, a  breast cancer patient. How does Sheila inspire you?

Sheila was  diagnosed with breast cancer at the young age of 40. She had surgery to remove a  breast, and just completed a year of chemotherapy and a trial drug to stop the  cancer from spreading. There’s an excellent chance that the cancer won’t come  back, but she’s clear that there are no guarantees. She’s working toward getting  into medical school, raising her sons, and living her life to the fullest. She  has not allowed cancer to be a road block but has used it to motivate herself to  another level.

Besides “good health,” if you could have one wish granted for every  cancer patient you see, what would it be? 

That they could learn to  make the choice of happiness. Some can make this choice and others struggle very  strongly with it. I see it makes all the difference. The trick is to come to a  place of contentment and also keep fighting the disease—it’s a hard balance to  maintain.

Articles

A Q&A with Karen Marchman, winner of the 2008 Extraordinary Healer Award for Oncology Nursing. 

Extraordinary Healer

At first glance, Patricia Newton, 71, and Kim White, 45, don’t appear to have  much in common. But during the past four years, the two women from Warren,  Arkansas, have become as close as mother and daughter. “Kim was just a casual  acquaintance, but when she heard I was diagnosed with breast cancer she called  me right away, and she’s been there for me every day since,” says Newton, who  discovered during that first phone call that her newfound friend had a  lumpectomy just a month before and was going through radiation treatment. “My  life changed drastically after meeting Kim. She became so much more than my  caregiver—she’s my best friend, companion, and faith teacher. She’s my  co-survivor, my co-everything.”

Though seemingly a simple extension of the caregiver definition, a new term  has entered the cancer vocabulary to define people who care for cancer  patients—co-survivor. “Just as we honor the lifelong fight of cancer patients by  calling them survivors, we are now also honoring the continuing role of  nonmedical caregivers&mdash;the spouse, parent, friend, neighbor, co-worker&mdash;anyone who  provides the support that is so critical for recovery, as well as maintaining  emotional and physical well-being of the patient,” says Wendy Mason, director of  project management for the Susan G. Komen Breast Cancer Foundation, which  recently launched a co-survivor program.

"We’ve always provided a helpline and educational tools for caregivers, but  we got to a point where we wanted to formally put a structure around the  co-survivor program to really legitimize their needs,” says Mason. The Komen  co-survivor program consists of, among other things, a collection of co-survivor  stories that illustrate the program’s key objectives: strength, support, love.  The goal is one easy-access area for co-survivors to be informed and connect  with each other.

Caregivers have major unmet needs—concerns about handling daily life, their  emotions, and their sense of social identity. Supporting these needs is an  integral part of overall patient care.

Though the term “co-survivor” has been employed for some time in other settings,  the recent extension into oncology has led cancer centers and support  organizations to diversify support services to provide a broader foundation for  those who are the backbone of strength for cancer patients.

Medical advances coupled with changing health policies mean shorter hospital  stays for cancer patients and more strain on those who care for them at home.  “Ninety percent of cancer care is delivered in outpatient settings, and  caregivers bear the major responsibility for this home care,” says Ronda C.  Talley, PhD, former executive director of the Rosalynn Carter Institute for  Caregiving. “Caregivers have major unmet needs—concerns about handling daily  life, their emotions and their sense of social identity. Supporting these needs  is an integral part of overall patient care.”

A growing body of studies confirms Talley’s  position that support for caregivers is key throughout the entire process of  coping with cancer. A recent study in the journal 

 reported that husbands of women with breast cancer had lower quality of life  independent of the time since diagnosis or stage of illness compared with men  with healthy wives.

Experts are finding that co-survivors need the same integrated approach to  wellness as their partners. “Co-survivors are often so overwhelmed with concern  for the patient that they forget to eat, lose sleep, skip exercise, and generally  let their own physical and mental health slide,” says Mitch Golant, PhD, vice  president of research and development for The Wellness Community, a non-profit  dedicated to providing support and education for survivors and co-survivors.  “Co-survivors take part in all of our mind, body and spirit classes—whether it’s  counseling groups, nutrition classes or meditation and exercise programs.”

Phyddy Kettler, a psychiatric advanced practice nurse who runs a weekly  support group for caregivers at M.D. Anderson Cancer Center, says caregivers  often are hesitant to ask for help or feel too guilty taking time for  themselves. “But it is vital that they do so in order to combat physical and  mental fatigue,” she says. Like many first-rate cancer treatment centers, M.D.  Anderson offers a growing variety of mind-body programs for survivors and  co-survivors, including massage, nutrition, yoga, Pilates, and weekly educational  forums presented by staff members.

An innovative laughter program used by Gilda’s Club, the national support  program named after Gilda Radner, is being adopted by an increasing number of  hospitals and cancer centers. “Laughter is one of the best remedies for the  depression and anxiety that can rob both survivors and co-survivors of the  energy needed to fight cancer,” says Gloria Nelson, a senior oncology social  worker who runs laughter sessions for cancer survivors and co-survivors at  Albert Einstein/Montefiore Cancer Center in New York.

Edward Haczynski, a 74-year-old former police officer, and his wife, Phyllis,  have attended Nelson’s laughter sessions since he was diagnosed with multiple  myeloma four years ago. “We’re all taking a stand that even though we have this  horrible disease, we’re still going to enjoy life and even have a good laugh  once in awhile,” says Haczynski, who often tells Jay Leno jokes. “I think my  wife likes to see me making people laugh. It’s in my nature and the cancer isn’t  going to take that away from me.”

When it comes to caring for a child with cancer, it’s important for the  entire family to be on the same page with treatment as well as making sure that  siblings, friends and teachers are clear about what’s going on with the young  patient. “It’s best to present everyone with the facts, otherwise the  imagination takes over and that can be worse than reality,” says Carol  Benefield, a counselor at Texas Children’s Hospital in Houston, who runs weekly  support groups for parents and siblings of pediatric cancer patients. The Child  and Life Program at the University of Michigan Comprehensive Cancer Center even  takes its support services directly to the patient’s school to help teachers and  classmates understand how the disease works and the symptoms.

When children are involved, survivors and co-survivors especially need to  fuel up on laughter, exercise and other stress-reducing activities. Family camp  programs, like the three-day Camp CLIFF at Camp for All in the Texas Hill  Country, take families away from the demands of fighting cancer.

“When our invitation to the camp came in the mail, my son was going through a  grueling four-month chemo treatment, and I was driving him an hour to the  hospital every other day,” says Susan LeBlanc, whose 9-year-old son Andrew was  diagnosed with non-Hodgkin’s lymphoma in June 2004. “Camp was three days of pure  freedom. The moms were in one cabin, the dads were in another, and the kids were  grouped by sex and age, so the support just came naturally. To see my son  running around bald-headed with a central line running out of his chest, feeling  like a normal little boy at summer camp—that was the best medicine for all of  us.”

I was so honored to be able to help Pat through her cancer and to get to know  this incredible woman.

Survivors and co-survivors gain enormous strength in numbers through camps  and retreats, patient/caregiver partnerships, small groups sharing emotional  support, and practical tips, and growing communities networking through  nationwide conferences and online communities.

When Bobbie Ragan of California was diagnosed with lung cancer, the  75-year-old couldn’t always express herself to her husband Rex because she was  either too tired or didn’t quite understand it herself. But for the past year,  she and her husband have attended a support group for couples. “Going to a  support group together has taken some of the stress off our relationship because  Rex learns from the entire group what I’m going through and how he can help.”  Now, when Bobbie has chemotherapy treatments, Rex knows to encourage her to nap  and fixes meals she can eat even when she has no appetite.

The safe environment also helped the couple open up to each other.  “Sometimes, it’s easier to tell your partner something in the supportive group  atmosphere,” Rex explains. “One time, Bobbie told me, ‘I wish you’d go to the  beach by yourself sometimes,’ and other patients chuckled and chimed in that  they’d like to have more time away from their spouse. My feelings might have  been hurt if she told me that at home, but it wasn’t as threatening when I could  see that other couples were going through the same thing.”

Sharing stories is a way for survivors to honor the people who provide  support and inspiration through their diagnosis and treatment. Last year, a  number of local Komen chapters and cancer centers initiated essay contests for  breast cancer survivors to honor their co-survivors. The Arkansas affiliate of  Komen teamed up with a local television station to feature five winning  survivor/co-survivor teams on a local talk show in addition to honoring the  co-survivors at a luncheon following the affiliate’s annual Race for the Cure  event.

Patricia Newton and Kim White were among the winning teams. “I was so honored  to be able to help Pat through her cancer and to get to know this incredible  woman,” says White. “I had no idea she was writing this essay about me, so when  we were picked, it was an amazing surprise. Just one more gift I’ve received  from Pat.”

Newton and White are known around the small town of  Warren as the “Dynamic Duo.” When they saw a need for a breast cancer support  group, they organized one. They also published a cookbook entitled 

 as a fundraiser and handed over a $16,000 check  to both the American Cancer Society and Komen last year.

Georgia-Pacific and its Quilted Northern Ultra bath tissue brand teamed up  with NASCAR’s Kyle Petty to host a “Time for Thanks” weekend at Victory Junction  Gang Camp in North Carolina last November. Of the more than 450 essays submitted  by survivors honoring their co-survivors, 32 survivor/co-survivor teams won a  weekend of spa treatments, horseback riding, and other activities.

Terri McClain and her husband Herbert were among the  winners. “During 33 years of marriage, I’ve always been the one doing most of  the cooking and caring for my husband, but while I was going through months of  chemo and recovery, our marriage did a 180,” says 54-year-old Terri, who was  diagnosed with breast cancer in 2001. “Herbert did whatever I needed him to do.  He went to all of my doctors’ appointments and chemo treatments. He nursed me  through the nausea and drained my tubes. He held me all night when I was scared.  He has been my rock. We’re both living with cancer and he’s a true survivor.”

Unique programs give gratitude and support to co-survivors.

Jennifer Haupt

Extraordinary Healer

A New Survivor's Club

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