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amp Bluebird—is it a special place
or a special program or is it just
that special feeling you have after
you’ve been th...
www.TheOncologyNurse.com18 NOVEMBER 2013 I VOL 6, NO 10
that you have been given permission
to enjoy life again and not le...
NOVEMBER 2013 I VOL 6, NO 10
Some take this advice, and others want
to partic...
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Camp Bluebird article in The Oncology Nurse magazine


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Camp Bluebird article in The Oncology Nurse magazine

  1. 1. C amp Bluebird—is it a special place or a special program or is it just that special feeling you have after you’ve been there? Can you explain Camp Bluebird to others, or do you just have to experience it firsthand? Is it like the camps that we remember as children, rustic and full of splinters, or is it butterflies and fire- flies? It is all of these things and more. Camp Bluebird is a safe place where you can share your hopes, fears, and experiences with others who understand what you are going through, because they have actually walked in your shoes. It is a community of understanding, filled with people with whom you have an imme- diate bond. At Camp Bluebird, you feel I n 2013 it is estimated that there will be 228,190 new cases and 159,480 deaths due to lung cancer in the United States,1 making it the leading cause of cancer-related death. In fact, it causes more deaths than colon, breast, and pros- tate cancer combined.2 Two main lung cancer histologic subtypes exist: small cell and non-small cell, with each having different clinicopathologic characteris- tics. The most common type is non-small cell (7 of every 8 people),3 which includes squamous cell carcinoma, adenocarcino- ma, and large cell carcinoma. Most often lung cancer occurs when people breathe in dangerous, toxic sub- stances. It is believed that smoking causes lung cancer by damaging the cells lining the lungs; as such, cigarette smoking is the ©2013 Green Hill Healthcare Communications, LLC GENETIC COUNSELING Inherited Susceptibility to Lung Cancer: What Do We Know? Cristi Radford, MS, CGC Ambry Genetics Continued on page 12 Continued on page 18 T he Moffitt Cancer Center in Tampa, Florida, is 1 of 41 cancer centers in the United States to receive the National Cancer Institute’s designation as a comprehensive cancer center, and it is the only such center based in the state of Florida. As a center of excellence, Moffitt takes care of patients’ needs starting with diag- nosis through cancer treatment on to survivorship. Moffitt is also an active research center, covering basic science, prevention, and clin- ical research with the goal of translating discoveries into improved patient care. Moffitt is committed to Total Cancer Care—a personal- ized course of treatment that provides individualized therapies based on a patient’s unique genetic fingerprint. The Oncology Nurse-APN/PA spoke with Elizabeth (Beth) Finley, RN, OCN, about her role at the Moffitt Cancer Center, where she works exclusively with patients with multiple myeloma. CANCER CENTER PROFILE Members of the multiple myeloma team at the Moffitt Cancer Center (left to right): Christine Simonelli, RN, BSN, OCN; Kenneth Shain, MD, PhD; Beth Finley, RN, OCN; Rachid Baz, MD; and Sheri Lemanski, RN, BSN, OCN. Moffitt Cancer Center Providing Care for Patients With Multiple Myeloma THE WHOLE PATIENT Camp Bluebird: A Survivorship Program for Life Leslie Verner, RN, BSN, OCN, CCRP, CBCN Cancer Outreach Coordinator, Mission Hospital SECU Cancer Center, Asheville, North Carolina NOVEMBER 2013 VOL 6, NO 10 NOTEWORTHY NUMBERS. . . . . . . . . 2 Breast Cancer BREAST CANCER Greater Attention to Cardiovascular Risk Needed for Breast Cancer Survivors. . . . . . . . . . . . . . . . . . . . . . . . . . 11 Paroxetine Does Not Reduce Tamoxifen’s Effectiveness in Breast Cancer Survivors. . . . . . . . . . 21 SIDE EFFECTS MANAGEMENT Raising Awareness of Cancer Anorexia-Cachexia Syndrome in Patients With Lung Cancer. . . . . . . . 16 Update on Managing Dyspnea. . . . . . . . . . . . . . . . . . . . . . . . . . 17 LUNG CANCER. . . . . . . . . . . . . . . . . . . 22 Paclitaxel in Lung Cancer I N S I D E N ovember is National Lung Cancer Awareness Month. It started in 1995 as Lung Cancer Awareness Day and expanded as the lung cancer community grew and awareness of the disease increased. In this issue, we explore some of the lung cancer–related highlights from the European Cancer Congress (ESMO/ECCO/ESTRO), held September 27-October 1, 2013, in Amsterdam, the Netherlands. Continued on page 6 NEWS BRIEFS Lung Cancer in the News Alice Goodman Continued on page 17
  2. 2. www.TheOncologyNurse.com18 NOVEMBER 2013 I VOL 6, NO 10 that you have been given permission to enjoy life again and not let cancer consume your thoughts. It is a place where tears can flow freely and laughter bubbles up at any moment—the kind of laughter that you haven’t let yourself experience in a long time, like every- thing is going to be alright—the kind of laughter that gives you hope again. That is part of what Camp Bluebird is all about, but it is also so much more. First of all, simply put, Camp Bluebird is a 2-night, 3-day retreat for adult cancer survivors, held each spring and fall in the beautiful mountains of North Carolina. It is sponsored by Mission Hospital in Asheville and the AT&T Telephone Pioneers, the vol- unteer organization of our local tele- phone company. Anyone 18 years or older with a past or current diagnosis of cancer may attend. This year our Camp Bluebird is joyfully celebrating its 20th anniversary. Camp Bluebird came to be in 1985, when a cancer survivor in Birmingham, Alabama, decided to start a retreat for adult cancer survivors. He approached the Foundation at St Vincent’s Hospital, and with help from their local Telephone Pioneers, America’s first adult cancer camp was born. It was named after the bluebird, which is known as the “symbol of hope.” This first 3-day retreat was so well received by cancer survivors in the area that St Vincent’s Hospital decided to share the idea with other hospital systems in the Southeast. Franchises were sold, using the Camp Bluebird name, and 36 cancer retreats were started in various parts of the country. Unfortunately, as the years went by, some of these retreats were discontinued due to lack of fund- ing, but others continued to grow and prosper. Now, 28 years later, the first Camp Bluebird from St Vincent’s Hospital is still going strong. It is offered each fall at Camp Sumatanga near Birmingham. Jeffrey Scott Powell, Administrative Director of Development for St Vincent’s Hospital Foundation, estimates that there are at least 23 of the original 36 Camp Bluebirds still in exis- tence, extending from Florida to North Carolina to Michigan to Texas. Our Camp Bluebird was started in 1993, when an oncology nurse from Mission Hospital in Asheville, North Carolina, and a representative from BellSouth, our local telephone company at the time, traveled to Birmingham to buy a Camp Bluebird franchise. We have been extremely fortunate with funding since our inception 20 years ago. Our Mission Healthcare Foundation has always supported Camp Bluebird finan- cially when our operating budget was running low. Although registration fees cover some of the cost for each camp, both private and corporate donations are always greatly appreciated. For 10 of the last 20 years, our local American Cancer Society has donated $10,000 per year, for a total gift of $100,000. Our ultimate goal is for Camp Bluebird to one day be financially self-sustaining, with all future camps paid for by interest from an endowment. This would be an incredible gift for the cancer survivors of western North Carolina. We have always held our retreats at the Bonclarken Conference Center in historic Flat Rock, situated in the beautiful mountains of North Carolina about a 40-minute drive from Mission Hospital. Accommodations are very comfortable, each room hav- ing 2 beds and a private bathroom. The Bonclarken staff have always made us feel welcome, and they are proud to have hosted Camp Bluebird at their facility for these last 20 years. Mission Hospital has encouraged their oncology nurses to serve as coun- selors at Camp Bluebird, as have private oncology offices. As an oncology nurse, I personally became involved with Camp Bluebird in 1994 when I was asked to serve as a counselor at the fall camp. Then a year later, the “director’s baton” was passed over to me. Being the director of Camp Bluebird has truly been the most challenging and also the most rewarding part of my career as an oncology nurse. It has always been my desire to make the cancer journey as easy as possible for my patients. Camp Bluebird is a special program that can benefit survivors at any point in their cancer journey: newly diagnosed, going through treatment, at the end of their treatment and unsure of what to do next, dealing with a recurrence, or in the final stages of their disease. Camp Bluebird has something to offer EVERY survivor at ANY time. At each of our 3-day retreats, we have 50 to 60 adult cancer survivors (about half returning campers and half first-tim- ers) paired with 30 to 35 counselors, comprising a wonderful combination of oncology nurses from either the hospi- tal setting or private oncology offices, plus social workers, physical therapists, chaplains, and the Telephone Pioneer volunteers. It always amazes me to watch the return campers make the first-time campers feel immediately at home. Each counselor’s job is to make his or her 2 campers feel special and pampered while at Camp Bluebird, by sharing meals with them, participating in free-time activities together, and keeping an eye on them to be sure they are feeling well and are not in need of medical attention. At each camp, in addition to the 6 to 8 oncology nurse counselors, there is also a “dedicat- ed” camp nurse whose role is to ensure that all of the campers’ medical needs are met. We also have a “dedicated” camp chaplain available for spiritual support. But by far, the biggest source of support at camp is the emotional support the cancer survivors give to each other, and it is truly magical to see how each retreat takes on its own personality because of the mix of people that attend each camp. To watch the first-time campers transform from scared little “first graders” into confident “seniors” by the third day of camp is like watching a miracle unfold in front of your very eyes. Through the years, I have had many campers tell me that Camp Bluebird has changed their life. Through the tears and the laughter they share with other survivors at camp and with their counsel- ors, they reach a point where they don’t fear the future quite so much. They may still fear recurrence of their cancer, but through conversations with other camp- ers and advice from trained facilitators in the small groups they attend, our campers learn coping skills that allow them to enjoy each day rather than dread what might happen. With 2 camps offered each year, it is always a challenge to come up with activ- ities that are fresh and new. Campers can choose from a variety of activities offered during free time between 1:00 and 5:30 pm on the first 2 days of camp. They are always encouraged to pick and choose those that interest them most, to avoid fatigue from overscheduling themselves. THE WHOLE PATIENT The Camp Bluebird quilt. Camp Bluebird: A Survivorship Program for Life Continued from cover A costume party at Camp Bluebird.
  3. 3. NOVEMBER 2013 I VOL 6, NO 10 THE WHOLE PATIENT Some take this advice, and others want to participate in everything! Many of the activities allow both the campers and their counselors to participate together. Other activities, such as the Healing Touch Reiki Therapy, are provided spe- cifically for the campers themselves. We also offer more serious, contem- plative activities, such as the Service of Remembrance, which is held on the second morning of camp in a very special memorial garden, outside under the trees. At this spiritual service, we remember past campers who are no longer with us, by symbolically put- ting a scoop of dirt into the base of a potted tree that will be planted on the Bonclarken property in their memory. The camp chaplain leads this service, and it is always very emotional. Immediately following this memo- rial service, campers are encouraged to attend small group sessions, where they can choose from several topics that may be pertinent to their situ- ations. Each group is led by a well- trained facilitator, whether it be an oncology nurse, social worker, or the camp chaplain. Some of the topics include Fear of Recurrence, Helping Your Family Deal With Your Cancer, Spirituality Issues, Healthy Eating for the Cancer Survivor, Dealing With Chemotherapy and/or Radiation Side Effects, and Survivorship Issues. We offer these small group sessions twice during each camp. Mealtime is always very special at Camp Bluebird, not only because the food is delicious, but also because it is a time to relax with new and old friends and reflect over the day. Many friend- ships have been made and strengthened around the dining room tables at Camp Bluebird. We always take a full hour for each meal, because it is such an important time for sharing. After din- ner, we all let our hair down and our free spirits come out to play, with live musical entertainment. In recent years, I have seen a lot of dancing in the aisles, and that is always encouraged! When we have a live band combined with a costume party, everyone is encouraged to dress up, but it is not required. Each party has a theme, such as a Hawaiian Luau, a ’50s Sock Hop, a ’60s Hippie Party, a Country Western Party, an Olympics Party, or a Come Dressed as Your Favorite Movie Star/Sports Personality Party. I mail a letter to each camper about 6 to 8 weeks before the next camp to let them know the theme of the costume party so they have plen- ty of time to put together a costume if they want to dress up. Prizes are often awarded for the most creative costumes. On the last day of each camp, after the counselors help the campers take their suitcases to the cars, we offer either a small group or a panel discussion. At our spring camp in May, we had a panel of experts discussing pertinent survi- vorship issues such as long-term dis- ability, Medicare/Medicaid, healthcare power of attorney, living wills, and hos- pice/palliative care. Then for the final lunch, campers are encouraged to invite friends and/or family to join us. At the closing ceremony, we show a slideshow of photos taken throughout the last 3 days. Seeing the expressions on the faces of the campers—enjoying them- selves and feeling free to just be who they are, accepted by all, wig or not, hair or no hair—is exhilarating. The pictures in that final slideshow say it all: Camp Bluebird is a place where you can just relax, throw your troubles away, and go home with a renewed zest for life. The immediate friendships made at Camp Bluebird may be some of the most meaningful friendships you have ever had. While we nurses can express our compassion and educate you about your cancer and try to calm your fears, we can’t know deep down in our souls how you are truly feeling, like another cancer survivor can. As the camp chaplain says the closing prayer, some of the campers seem afraid to leave this safe place, thinking they might lose the peace and serenity they have felt here. The good news is that many campers have told me that this peace has stayed with them long after leaving Camp Bluebird and that their newly acquired coping skills have helped sustain them during times of worry and stress. These “graduates” of Camp Bluebird are always invited to attend again in the future. However, since survivors are living longer due to early detection and better treatment options, about 10 years ago I had to make the difficult decision to let campers return to only one camp per year. Every January, past campers receive a questionnaire, asking if they would like to attend the spring or fall camp that year. I always give priority to first-time campers and to those who are dealing with a recurrence of disease. If a return camper has been to more than 5 previous camps, I automatically put them on a waiting list until I know we’ll have a spot for them. Fortunately, a camper has NEVER been turned away from our Camp Bluebird because of inability to pay. For many years, the registration fee for first-time campers has stayed at $40, but if that is a problem, we ALWAYS have partial or full schol- arships available to cover the registra- tion fee. The fee for return campers has been set at $75 for the last 5 years or so, and if that is a problem, scholar- ships are available, no questions asked. In closing, I want to tell the story of a woman with breast cancer who attended Camp Bluebird for many years back in the mid-1990s. Unfortunately, her disease progressed, and each time her husband brought her to camp, she appeared more frail. The final camp she attended, she stayed in a wheelchair most of the time because of weakness and bone pain. However, during the costume party while the band was play- ing, she got up out of that wheelchair and danced for a couple of minutes. You should have seen the look of joy on her face. The rest of us were smiling too, through our tears. And when her husband came to pick her up on the last day of camp, she had the energy to walk out to him without assistance. We lost her to breast cancer a few months later, but we were all truly inspired by the incredible courage she displayed. Now her husband is a survivor too, and he comes to camp and always talks about his precious wife and how she loved Camp Bluebird. We will never forget these special patients who pass through our lives and find a permanent place in our hearts. As oncology nurses, we do all that we can to make their cancer journey as easy as possible, and in return they teach us so much more than we could ever teach them. They have all figured out the secret of life and what is truly impor- tant, living in the moment and being with the ones you love. Camp Bluebird is like that…living in the moment and being with the ones you love. It is so much more than a place or a program… it is a feeling that you carry with you after you leave. It is permission to enjoy the rest of your life. Camp Bluebird is hope for your future, no matter how short or long that future might be. l For more information about starting a survi- vorship program like Camp Bluebird, please contact Leslie Verner at 828-213-4656 or “Camp Bluebird allows us to try new things, to stretch ourselves. I remember at my first camp, I reluctantly signed up for Reiki Therapy and didn’t know how this could possibly make me feel better. Well, one hour later, I staggered, completely in a state of bliss, from the Reiki room and was a firm believer in this healing touch therapy modality.” Carolyn Comeau, a breast cancer survivor who has attended Camp Bluebird several times, speaks of her first experience at Camp Bluebird A fishing party at Camp Bluebird. Making a birdhouse at Camp Bluebird.