The 30th annual “Celebration of Life” Bone Marrow Transplant Reunion will take place Apr. 21. As this landmark event approaches, survivors of the lifesaving procedure inspire City of Hope personnel with their unique stories.
Holly Bengtson, R.N., is one such survivor. NurseWeek magazine featured her story in an article about nurses who are cancer survivors.
The following is an excerpt from “Surviving and Thriving: Nurse survivors stress primary care after treatment” by Heather Stringer, NurseWeek, Nov. 21, 2005. (Copyright 2005; all rights reserved. Reprinted by permission from NurseWeek/Nursing Spectrum.)
Holly Bengtson, R.N., thought she had a simple explanation when she started feeling unusually tired and then lost 10 pounds within a month without trying. She blamed her new night-shift nursing job.
The 49-year-old nurse also started having night sweats, which she rationalized as a sign of menopause. After about a month of these apparently minor anomalies, she felt an aching pain in her sternum. She went to the emergency room expecting to get the problem resolved quickly.
Bengtson began feeling anxious when she heard her name spoken repeatedly in the halls. The doctor entered the room and told her that her white blood cell count was really high.
“How high?” she asked.
“Leukemia high,” he answered.
Bengtson was shocked and devastated. First she tried to explain that there must be a mistake. When she had the results confirmed the next day, she began preparing for death.
Two weeks later, something happened that Bengtson will never forget. Someone gave her a tour of a cancer center called City of Hope in Duarte, Calif., and pointed out a nurse who had received a stem cell transplant 20 years prior.
“When I saw that the nurse with the transplant was alive and working, I thought for the first time that maybe I could make it,” says Bengtson.
Four months after being diagnosed with chronic myelogenous leukemia, Bengtson received an allogeneic hematopoietic stem cell transplant at City of Hope from her HLA-matched sister.
Human leukocyte antigen (HLA) testing is used to match patients and donors for bone marrow or cord blood transplants. Not only did she survive the transplant, but she went on to accept a job as a nurse at City of Hope. This December, she will celebrate six years of complete remission.
Cancer is slowly evolving from a death sentence to an increasingly treatable disease, according to national statistics. Although these numbers are encouraging, researchers are finding evidence that after cancer treatments end, medical care is sometimes lacking. Craig Earle, M.D., M.Sc., and Bridget Neville, M.P.H., published a study in Cancer in 2004 that showed cancer survivors might not get optimal medical care for their other medical conditions.
Poor communication between doctors and patients and between different physicians may be the cause of the lack of primary care for cancer survivors, according to Earle. These patients may lose touch with their primary care providers during their intense cancer treatments, or may think their oncologists are acting as primary care providers.
Kathy Haley, R.N., M.S.N., N.P., O.C.N., a nurse practitioner at Scripps Memorial Hospital in La Jolla, Calif., understands why it is difficult for cancer survivors to stay connected to their primary care providers.
“A lot of patients come in to get chemotherapy and treatment, and they are used to talking to us and seeing us,” she says. “We get them through difficult times, and they get so used to coming here that they may forget they have their primary care provider.”
Bengtson can relate. The doctors and nurses who treated her at City of Hope were so caring, patient and helpful that she found it difficult to go back to her regular physicians outside of City of Hope.
“It’s frustrating to go somewhere else,” she says. “They don’t know my whole story and don’t know me the same way, but I do it out of discipline.”
Betty Ferrell, R.N., Ph.D., F.A.A.N., a nurse and research scientist at City of Hope believes the disconnection between cancer survivors and primary care providers is a problem that needs to be addressed. She is a member of a committee that worked to provide more comprehensive guidelines for providers once cancer treatment ends.
“For example, if a patient is 50 and took drugs that can have pulmonary effects, then this patient might need a cardiac workup, different lab work than usual, or exercise might be even more important,” Ferrell says.
Even though good primary care can be a factor in helping cancer survivors stay healthy, some nurses are aware that the emotional fallout of cancer can be devastating. Cancer also often leads patients to shift their priorities. Bengtson experienced this radical shift in her own life.
“I definitely don’t care about material things anymore,” she says. “I don’t buy furniture or the latest car or clothes. I want to spend more time with my kids and husband. I don’t want to go to Europe for vacation. I’d rather just do normal things with my family.”