Like nearly 10 million Americans, Ellen Stovall is a cancer survivor. She also is a wife, mother, and passionate public servant. Everyone touched by cancer should know her name–not only because of her long list of accomplishments on the health front, but also because, as president and CEO of the National Coalition of Cancer Survivorship, she is one of the most devoted and articulate advocates for cancer patients in Washington, DC, today.

Over the years, she has held many important positions in her efforts to bring legislators' attention to cancer survivors and the physical, psychological, social, economic, and spiritual issues with which they must deal. But it is her personal story that makes Stovall such an effective and ardent campaigner.

On the same day in 1971 that former President Richard Nixon signed the National Cancer Act, she began treatment for Stage IVB Hodgkin disease. She was 24 years old, the mother of a six-week-old son, and the five-year survival rate for patients with her stage of disease was less than 20%. Her prognosis was poor and having recently given birth, she was ineligible for a Phase II clinical trial. Her only choice was Cobalt radiation.

"They said that if I lived two years without a recurrence my chances of living five years increased to 50%," she says. "I was determined to get to that two-year mark because of my husband and my baby. And because I wanted to live. I couldn't imagine that I wouldn't live. So I made a pledge that if I lived for two years, I would devote whatever was left of the rest of my life to doing something about this disease."

She was as good as her word. At her two-year mark, she went to her social worker and asked if there were other young adults in Georgetown, where she had been treated and close to where she lived, with whom she could talk.

Stovall remembers, "I told her, 'I have a two-year-old baby. I have hot flashes. I'm sexually uncomfortable in my own skin. I'm depressed. I'm scared. I don't know what's in front of me.' And the woman put together a support group of young people that had different kinds of cancer. Shortly after that, I volunteered for the Leukemia and Lymphoma Society and the American Cancer Society, helping facilitate support groups in the Washington, DC, area."

"Once a Girl Scout, always a Girl Scout."

Fortunately, Stovall admits, volunteerism is in her blood. "I'm a very cause-related kind of person. My family was very engaged in the community and through them I had wonderful role models who showed me that that is what you do. You get involved in things that help the town. I remember tagging along when my mother rolled bandages for the American Cancer Society."

In addition, the people she met in her first Georgetown support group opened her eyes to the need for patient advocacy. "I had cancer under the very best circumstances. I had access to a comprehensive cancer center. I had a husband and family who loved me. We had a good income and great insurance coverage. All the support one could possibly have."

But that was not true of everyone in the group. Her compassion was especially aroused by one young man with leukemia. He had graduated from college and returned home to live. He told of how his mother bought an autoclave to sterilize his dishes and how she washed his clothes separately. It amazed her that anyone could think that cancer was contagious.

"When I realized that not everyone was getting what I got or was as privileged as I was, I was on a campaign to change that," she says.

[Ellen Stovall's story will continue in the next issue of the Survivorship, Quality of Life, and Rehabilitation SIG Newsletter. For more information about the National Coalition for Cancer Survivorship, visit its Web site at www.canceradvocacy.org.]

Learn About the Role of Oncology Rehabilitation Nursing

Oncology rehabilitation nurses must adapt to the ever-changing medical and rehabilitation needs of patients with cancer. Not only do nurses need to focus on short-term, complex medical goals, they also must focus on long-term goals related to rehabilitation.

Because of changes in the healthcare system that have resulted in shorter acute-care stays, oncology rehabilitation nurses must possess not only skills of rehabilitation but also the ability to manage the medically complex care of patients. Nursing skills consist of the administration of blood products, parenteral nutrition, and chemotherapy, as well as the monitoring and care of epidurals, abdominal and epidural portacaths, pigtail catheters, omaya reservoirs, pleurovacs, and central lines.

Oncology rehabilitation nurses coordinate the care of patients undergoing various types of therapies: bone marrow transplant, chemotherapy, radiotherapy, and experimental protocols. Nursing care consists of symptom management as well as coordinating and participating in rehabilitation modalities to optimize patient function and foster independence.

The curative and palliative management of patients with cancer are accomplished by nurses using ambulatory infusion and implantable pumps, making the safe and precise delivery of chemotherapeutic and analgesic agents possible.

Oncology rehabilitation nurses manage oncologic emergencies, including neutropenic fever, tumor lysis, superior vena cava syndrome, cardiac tamponade, spinal cord compression, diffuse intravascular coagulation, and sepsis in the rehabilitation setting. Within this unique and specialized area of nursing, oncology rehabilitation, nurses must have a solid knowledge base and strong assessment skills, be dedicated to short- and long-term goals, and be adaptive to the changing medical and rehabilitation needs of patients with cancer.

Oncology rehabilitation nurses always are looking at their patients holistically. The intense medical management, as well as the psychosocial and spiritual side of care, is important. Nurses wear their compassion and caring on their sleeves, and seeing nurses sitting next to patients, holding their hands, giving them a hug or a word of encouragement, or leaving rooms with tears in their eyes is not uncommon. Being present with patients throughout their rehabilitation and listening to their thoughts and feelings is described well in the following clinical narrative written by Elaine Kelley, RN, CRRN. Elaine is the nurse practice leader of the oncology program at the Spalding Oncology Rehab Program at Youville Hospital in Cambridge, MA.

I was asked to help the staff think of a clinical narrative or exemplar. Many ideas were shared. We have had many memorable patients here during the past year. When Barbara's name was mentioned, we determined that she was an excellent representation of what this unit has been about for many of the staff members. For me, she was more than just another patient with cancer. She was a woman of extraordinary inner strength and determination. Her response to our care helped shape and direct my goals as a professional nurse. She is a prime example of the effort, skills, and teamwork that take place on this unit every day.

Newly diagnosed with small-cell lung cancer, Barbara arrived last June in great spirits, ready to accept the challenge chemotherapy and radiation therapy had to offer. "Just another bump in the course of life," she explained to me. Barbara has overcome many obstacles in her life. Before her admission, she was independently living in an elderly housing facility at a wheelchair level. Her medical history includes polio with paraparesis, hypertension, Crohn disease, and chronic obstructive pulmonary disease. Barbara had just finished her first course of chemotherapy and started daily radiation for a hilar mass. On her arrival to rehabilitation, she was trying to figure out the best way to tell her family, all out of state, the details of her diagnosis and was deeply concerned about how they would take the news. Although she knew her prognosis was questionable, Barbara was highly motivated to return home after successful treatment.

Barbara's course with us was fragmented. Her stay totaled more than three months and consisted of at least three emergency room transfers for severe neutropenia and complications surrounding blood transfusions. Each nadir from chemotherapy was a major setback for her. The respiratory complications left her fatigued. Valuable energy was consumed as she struggled to breathe and endured continued daily radiation therapy. Radiation esophagitis lead to poor nutrition. Her skin became excoriated because she was unable to take her medications for her Crohn’s disease. Despite these setbacks, she was determined to work toward recovery. She knew she had good and bad days and made the most of the good ones. I was challenged at times to teach her to pace herself. She would work to sheer exhaustion in the morning and then be unable to continue activities for the rest of the day.

Even more challenging was when her fears and doubts began to surface. Her spiritual and psychosocial well being were declining. I was sitting next to her after a nebulizer treatment one evening when she said, “I don’t think this is worth going through for something that’s probably not going to be cured.” She knew she had more radiation and at least three more chemotherapy treatments. She had told the chaplain about her concern regarding how she might be seen in God’s eyes if she stopped treatment. I recognized her search for hope. She asked me my thoughts based on my experience with lung cancer. I never felt more like running out of the room for fear of saying the wrong thing. I turned instead to exploring what she knew. I wondered if the symptoms and complications related to her treatment were adding to her despair. We discussed conversations she had with her oncologist as well as which side effects she felt were the most troublesome. She wanted to know if her reactions were similar to others who received the same treatments. I discovered her fears were about her quality of life and independence, which she had always fought for and maintained. I validated her concerns, let her know that having those feelings was normal, and told her that cancer treatment doesn’t always consist of clear-cut decisions. I reassured her that no matter what goal she set for herself, we would work with her so that she could be as independent as possible. I offered to call in further support. Social service and the oncology chaplain already were actively involved. Their availability and acknowledgment of her spiritual and social needs enhanced our work. I wasn’t surprised when Barbara opted to continue chemotherapy. Each nadir seemed to be worse than the last, resulting in trips to the emergency room, transfusions, and total parenteral nutrition. She struggled with social isolation when sepsis was questioned and she asked her friends not to visit. To ease the isolation, the staff began incorporating music, art, and puzzles (three things she loved) into her therapy. We listened, provided comfort, and encouraged life. She told me fighting back was getting too hard. “How much more can I put up with?” she asked. We all spent as much time as possible with her. She received the sacrament of the sick from the chaplain only days before having to go to the emergency room again. Not surprisingly, she bounced back, returning to us once again. She was relieved and happy to be back in a place where she felt safe, goal-oriented, and hopeful about her future.

We continued to work to improve her deconditioned state. She always put forth maximum effort, and we let her take the time she needed to be independent. One nurse wrote, “It took one and a half hours to get all her pills down, but she did it.” Equally consuming was a trip to the bathroom. Another round of chemotherapy came and went along with another nadir cycle. Her response was good, but her prognosis was that she had only a year to live. “I’m not afraid of death,” she told me. Her strong faith had carried her through. Barbara looked forward to going home and living each day to the fullest with her friends and family. By the time she was discharged, she was able to perform activities of daily life independently, she could care for her peripherally inserted central catheter, her skin was intact, and her nutrition had improved. She knew her medications inside out and had learned to master her new leg brace. She was so appreciative and thankful at discharge, and she attributed her success and capacity to get through this ordeal to the caring staff. The complexity of both her medical and spiritual needs allowed me to see the important role of rehabilitation for patients with cancer. For all of the agonizing aspects of cancer care, patients like Barbara energize me to continue in this field.

Tell Your Patients About the Patient Advocate Foundation

Do you know about the Patient Advocate Foundation, Inc.? The foundation is a national nonprofit organization that was established in 1996 and serves as an active liaison between patients and their insurers, employers, and/or creditors to resolve insurance, job retention, and/or debt crisis matters relative to their diagnoses. These services are provided through case managers, doctors, and attorneys.

The Patient Advocate Foundation states that its mission is to safeguard patients through effective mediation by ensuring access to care, maintaining employment, and preserving patient stability.

The Patient Advocate Foundation is an excellent resource to give to your patients if the need arises. For more information and brochures, call 800-532-5274 or visit www.patientadvocate.org.

Catch Up on News, Opportunities, and More

Introducing the New Chemotherapy and Biotherapy Update Course
Update your clinical knowledge of chemotherapy administration with this new online course. Material covered includes practice issues, such as error prevention and safe handling, case studies on symptom management, and information regarding newly approved medications. Students who take this update course will not receive an ONS Chemotherapy Provider Card. For more information, go to http://onsopcontent.ons.org/education/distanceeducation/chemoupdate/index.shtml.

New Core Curriculum Available Now
Entirely revised, updated, and expanded to reflect the current state of oncology nursing practice, the new fourth edition of the Core Curriculum for Oncology Nursing is the definitive source for concepts and practices in oncology nursing. Based on the blueprint of the OCN^® examination by the Oncology Nursing Certification Corporation, this resource is a powerful study tool for nurses planning to take the OCN^® test. Order your copy today at http://esource.ons.org/ProductDetails.aspx?sku=INPU0545C.

Check Out the Redesigned Evidence-Based Practice Resource Area
The Evidence-Based Practice Resource Area is your guide to identify, critically appraise, and use evidence to solve clinical problems. Be sure to check out the new format, which allows for much easier use and navigation at http://onsopcontent.ons.org/toolkits/evidence/index.shtml.

Visit the Hematologic Toxicities Resource Area
Visit the newly redesigned Hematologic Toxicities Resource Area–a clinical practice resource area dedicated exclusively to the hematologic side effects of cancer treatment via continuous infusion. Go to http://onsopcontent.ons.org/Toolkits/HemTox/index.shtml to get up to date on the latest news and developments in the field.

ONS Virtual Mentoring Program
To support the ongoing development of oncology nurses, ONS is offering a new virtual mentoring program. Whether you're a seasoned oncology nurse, less experienced, or new to oncology, be sure to take advantage of this valuable opportunity.

As a mentor, you will have the opportunity to strengthen your coaching skills, demonstrate leadership, and contribute to the development of cancer nurses from around the world. We are confident that you will find this to be one of the most rewarding experiences in your professional career. To access the tool and enroll in the program as a mentor, visit www.3creekmentoring.com/ONS and enter group code 921911.

As a mentee, you can expect to expand your personal networking opportunities, have a sounding board for testing your ideas and plans, receive positive and constructive feedback on your professional and personal development, and increase your self-awareness and self-discipline. To access the tool and enroll as a mentee, visit www.3creekmentoring.com/ONS and enter group code 789718.

Are You New to Oncology?
If so, enroll in the Cancer Basics online course series! This new four-part online series will provide you with a fundamental understanding of cancer care. If you're an experienced cancer professional, it will serve as a valuable review. For complete information or to register, go to http://onsopcontent.ons.org/education/distanceeducation/cancerbasics/index.shtml.

Congratulate Your Fellow SIG Member

Congratulations to our fellow SIG member, Debra Thaler-DeMers, RN, OCN^®, PRN-C, PHN, who just received the OCN^® of the Year Award. She is a dedicated oncology nurse working at the Peterson Center for Cancer Treatment at Stanford University in California and has contributed to our SIG newsletter. She has been a member of the board of directors of the National Coalition of Cancer Survivorship and has been instrumental in the development of the Cancer Survival Toolbox CD kit. She is a survivor of two primary cancers. Debra has written and lectured extensively on pain management and palliative care, long-term and late effects of treatment, public policy issues related to cancer, and sexuality issues for cancer survivors.

Way to go, Deb! We applaud you!

Editor's Message
Why I Relay

Relay For Life is an event that raises money for the American Cancer Society's cancer research efforts. Relays take place all over the United States; in Virginia Beach, it is an overnight event involving walking, luminaria, games, music, homemade food, and a healthy combination of tears and laughter.

Our local Relay For Life took place last weekend. I have been involved with the relay almost since moving to Virginia Beach in 1998. It's such a personal celebration of life and support for people with cancer that I was immediately drawn to it. This year, we raised almost $3 million for cancer research. This money will help make significant advances in the way patients with cancer are treated and will improve the quality of life for cancer survivors I will never meet.

So why do I relay (i.e., join a Relay For Life team)? I relay as an oncology nurse in honor of the patients with cancer I have treated, as a friend to those I know who have been diagnosed with the disease, and as an individual whose life has been touched by cancer. I relay for all of the patients with cancer I have treated throughout the years. I relay for Helen, a spunky survivor of advanced breast cancer who was a mover and a shaker. A 23-year recovering alcoholic, she helped start several of the ongoing Alcoholics Anonymous (AA) meetings that take place in Virginia Beach and, despite her illness, continued to volunteer on weekends for the AA hotline. Helen always had a listening ear for the patient in the next chair when she came to my chemotherapy room. Helen taught me much about growing old gracefully despite a cancer diagnosis and about making peace with oneself before dying. When Helen was well enough, she marched in the Survivor's Lap with a big grin on her face, waving to all of her fans from the oncology practice where I worked. Helen has since died, but I relay to honor the gift of her life and countless other patients' memories.

I relay for the ever-increasing number of friends who have been diagnosed with cancer. Some attend the relay, and some choose not to. I relay for my friend Jim, who just finished treatment for prostate cancer. An athletic man in his 50s, Jim enjoys many sports and struggles with having lost almost a year of kayaking, running, and skiing to surgeries, chemotherapy, hormonal treatments, and debilitating cancer-related fatigue. Last year, Jim walked the track from 12–5 am; this year, he sat huddled in the team tent, wearing all the borrowed clothing he could find to ward off the chill of the cool spring evening. Next year, I hope he'll be out walking the track again, but whether he walked or just watched, he was very much an integral part of our team.

I relay for Jim's wife Gussie, too. Last year, Gussie lived through having a husband diagnosed with cancer, a son serving in the war in Iraq, and some serious work-related controversy that affected her in many ways. I watched her cope with Jim's hospitalizations, his struggle with side effects, the absence of her son at such a critical time, and her concern for her son's life. I watched her insomnia wax and wane and prayed for her during such a difficult year. My husband could have been the one diagnosed with prostate cancer; my son could have been the one serving overseas. I relayed to stand with Jim and Gussie in their battle against cancer and in celebration of Jim's life today.

I relay because next year, or in 5 or 10 years, I could be walking the Survivor's Lap. We don't know who will be diagnosed with cancer and who will escape the disease; the longer I live, the more I realize what a gift of grace my health is. I relay because I choose to stand up for life. I walk the relay track in memory of my mother-in-law, who died four years ago but who lives on in my heart. I remember the deep friendship we shared, her lasagna that I never completely learned how to duplicate, and the many books we read together.

As I view the thousands of luminaria lit after sundown in memory or honor of all cancer survivors, I walk for Kathy, recently diagnosed with breast cancer and just starting chemotherapy this week. Why was she diagnosed and not me? Well then, because I am the healthier of the two of us, I walk in her stead. I relay in celebration of the many cancer survivors who have crossed my path, for the life lessons they have taught me, and for all of our futures.

Relay For Life serves to remind me why I am an oncology nurse. It reminds me how precious life is and how much in life we have to celebrate. It teaches me that although many of the people I have known professionally or personally have died, their lives and who they were live on. As children run around the track in glow-in-the-dark jewelry and adults munch on barbeque, Relay For Life reminds me that I need to give thanks daily for the gift of life and for the gift of the many cancer survivors I know today.

Do you relay?

Coordinator's Message
Contribute to Our SIG

Hello fellow SIG members! Please welcome with me Nadine V. Wampler, RN, MSN, OCN^®, as our coordinator-elect! She attended the SIG meeting at Congress and was able to meet the small group of dedicated members who attend every year. Because of a personal schedule conflict, I was unable to attend ONS Congress this year. Jean Madden, RN, BSN, OCN^®, our editor, chaired our SIG meeting.

In the past issue of the newsletter, Jean and I addressed our SIG's strengths and weaknesses. We summarized the Quality Improvement and Needs Assessment Survey. Our SIG has more than 127 members who have either elected it as a free SIG or paid $15 to be a member. From the survey, I had six names of people who were interested in contributing to the SIG by sharing from their personal or professional experiences or perspectives. Two of the six have replied to me, and I am delighted with our dialogues. However, I have e-mailed the others more then once and have not received a reply.

Why do I share this with you? We are adults, and I know we are all busy. As coordinator, I refuse to pester SIG members about getting involved. I do want to address accountability to each other. What will it take? Why do we have this SIG if only the same five people sacrifice their time to keep the SIG and our newsletter going? I am very discouraged, but I will not give up. Many SIG leaders probably feel the same way that I do.

I am not ready yet to close the doors. I know Nadine will have the same challenges as Jean and I have had. I hope they will be fewer next year. You have a choice about whether to get involved. This is a decision. We all can make excuses. If you joined this SIG, then please become actively involved and not just be a passive reader. We have so many members and we are growing—or are we? I am just dumbfounded that more SIG members won't take the time to write several paragraphs or contact Jean or myself.

I am truly saddened about this. What else can I say? Don't let apathy ruin this SIG and its great potential. Please search your heart and share your treasure with our SIG members. The old Swedish proverb comes to mind: "Many hands make the work load light."

How can we network better and improve, increase our visibility, become better known in the ONS organization, or work on a project if we don't start by simply sharing and writing for the newsletter? This is not the Oncology Nursing Forum or Time magazine. It's our newsletter.

If even four members contributed to each SIG newsletter—WOW! My e-mail address, heart, and ears are open. Thank you for your time. I hope you will reconsider and contact me with ways you can contribute. Your time and sharing are valuable and can make a difference for one of your peers reading this newsletter. Survivorship issues, quality of life, and rehabilitation encompass so much and need to be in the spotlight more than ever.

Wishing you all a fun summer. Make every day count!

Consider Becoming an Oncology Nursing Forum Reviewer

Are you interested in reviewing the latest in oncology-related resources? The Oncology Nursing Forum's Knowledge Central Review Board is composed of oncology nurses who enjoy reading and evaluating newly released books, pamphlets, videos, CDs, DVDs, and Web sites that are relevant to oncology nursing. The column's associate editor contacts reviewers when media specific to their content area are received. Previous experience as a reviewer is a plus but not necessary.

Reviewers are valued volunteers who contribute their professional knowledge and clinical expertise to the Oncology Nursing Forum and are credited for their reviews. Reviewers can keep the media once reviews are complete.

To learn more about serving as a reviewer or to request an application, call Administrative Assistant Laura Schnable at 412-859-6271 or e-mail pubONF@ons.org.

Membership Information

Survivorship, Quality of Life, & Rehabilitation SIG Officers

To view past newsletters click here.

ONS Membership/Leadership Team Contact Information

Angie Stengel, Director of Membership/Leadership
astengel@ons.org
412-859-6244

Diane Scheuring, Manager of Member Services
dscheuring@ons.org
412-859-6256

Carol DeMarco, Membership/Leadership Administrative Assistant
cdemarco@ons.org
412-859-6230

The Oncology Nursing Society (ONS) does not assume responsibility for the opinions expressed and information provided by authors or by Special Interest Groups (SIGs). Acceptance of advertising or corporate support does not indicate or imply endorsement of the company or its products by ONS or the SIG. Web sites listed in the SIG newsletters are provided for information only. Hosts are responsible for their own content and availability.

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