DiversityNursing Blog

When Cancer Becomes Personal: Oncologists Share Their Own Stories at ASCO Session

Posted by Erica Bettencourt

Wed, Jul 09, 2014 @ 11:10 AM

By Peggy Eastman

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In an unusual and powerful educational session held on the last day of the American Society of Clinical Oncology Annual Meeting, three oncologists shared what they have learned from their personal experiences with cancer, and how what they have learned has improved their practices.

“It's very difficult to speak about these issues in a public forum,” said session moderator Teresa A. Gilewski, MD, an oncologist in the Department of Medicine at Memorial Sloan Kettering Cancer Center, who has organized and led several innovative sessions at ASCO meetings over the years. She thanked the speakers for being willing to share their personal stories with the ASCO audience despite the strong emotions their stories clearly triggered in all those in the room.

The first to speak, Andrew S. Artz, MD, MS, Associate Professor of Medicine and Clinical Director of Hematopoietic Cellular Therapy at the University of Chicago Medical Center, related how his three-week-old daughter displayed a tumor in her left eye, and a suspicious area in her right eye, first detected by his wife. They obtained an immediate referral to a pediatric ophthalmologist from the baby's pediatrician.

The diagnosis after genetic testing was that the tumor was advanced retinoblastoma due to a mutation (based on her young age and two unaffected older siblings). The baby's rare cancer was a shock; he noted that there was no history of cancer in his family.

“It was a drastic transformation for me,” said Artz of the experience with his baby. “I never realized how anxiety-provoking the word ‘suspicious’ was until you're faced with ‘suspicious’ yourself.”

Artz and his wife were offered three treatment options, one of which was immediate enucleation of the left eye, and one of which was an investigational intra-arterial chemotherapy treatment approach, which was initially discouraged by the specialists they consulted.

“Remember, I'm already at a university; these are my colleagues,” he said. While being at a major medical center was an advantage, it also presented a delicate balancing act in terms of seeking additional opinions on his daughter's cancer. Ultimately, he and his wife chose the investigational retinoblastoma treatment following systemic chemotherapy. The baby had a recurrence one year later, which was treated with intravitreal chemotherapy; and she is now fine, yet will continue to have a lifelong increased risk of cancer.

Artz said he has learned a great deal from his personal experience about how oncologists can better help cancer patients cope: “To us it's a stage; but patients want to tell you about how it was diagnosed,” he said. In short, they want to tell their story to the oncologist. “That initial experience [with a patient] paints a canvas of who you are.”

Now, in his practice, he said, “I am more humble and more patient-centric; I am more willing to offer non-cancer related advice [on caregiving and caregivers, for example]. In addition, “I ask for feedback from patients, and I schedule more time for new patients.”

He offers this advice to oncologists: “Don't try to walk in a patient's shoes, just make the shoes fit better.” From his own experience, Artz has also developed specific suggestions for oncologists on interacting with cancer patients and their families (see box, next page).

In the summer of 2006, the late neurosurgeon Kelvin A. Von Roenn, MD—known for his dedication to training young residents in the art and science of neurosurgery—began to show serious and ominous physical symptoms. “I thought I knew a whole lot about grief until I experienced it myself,” said his wife, Jamie H. Von Roenn, MD, Professor of Medicine at Northwestern University's Feinberg School of Medicine and ASCO's Senior Director of Education, Science, and Professional Development.

Her husband had fatigue, nausea, a decrease in appetite, renal failure, and a bilateral ureteral obstruction; his diagnosis was undifferentiated small cell carcinoma of the renal pelvis. His blood urea nitrogen (BUN) level rose to 100, and he had dialysis and chemotherapy and underwent a nephrostomy. His wife knew too well that his prognosis was poor.

“He was kind of a stubborn ‘I can do anything’ kind of guy,” she said. She told his oncologist, “He wants it straight.” The treating oncologist told the Von Roenns that Kelvin (who had brain metastases) had perhaps six months to a year to live. As an oncologist, “I knew it couldn't be that long, but I wanted to believe it,” said Jamie Von Roenn; her husband died in October 2006 at the age of 56.

At the time of diagnosis, the Von Roenns had been married for nearly 28 years; their three children were 14, 16, and 22.

After his diagnosis, the Von Roenns, who were in the habit of going out on a date every Saturday night, sat on their bed and cried. “That night was the only time he cried,” Jamie Von Roenn remembered. “He wasn't up to going down and talking to the kids, so I did.”

Through her personal experience with her husband's incurable cancer, Jamie Von Roenn said she has learned many lessons or had ones she already knew reinforced. The first was that “even in an excellent hospital, it's stunning to me how terrible the care can be... if I wasn't there, he would not have been OK.”

The second was that most patients want the truth about their disease: “It undermines the hope people have when you don't tell them the truth,” she said, because it prevents them from making the most of the time they have left.

The Von Roenns chose hospice care at home, which she calls “good in the midst of bad.” Kelvin Von Roenn was cared for on the first floor of their home. “The most frightened I ever saw him was when he was tied in a wheelchair and we carried him downstairs,” she said.

During his last days, she and her husband went through what she calls the “five things” people need to say to each other when someone is dying: “I forgive you, forgive me, thank you, I love you, and goodbye.” One evening each of their children went in and talked to their father and went through the five things with him.

“We had our last days as a family,” said Jamie Von Roenn. Her husband's elderly mother managed to come to see him, since he could not go to her. Her husband and she planned his funeral; “It makes a huge difference to know what someone wants,” she said. “He was determined in his last weeks of life to help me with financial things,” an area he had handled. When their financial advisor cried, Jamie Von Roenn decided, “This is the person who cares,” the one she wanted to turn to for help with money issues.

Perhaps the biggest lesson she learned was how to deal with grief personally after her husband's death, which she said has given her an increased appreciation for helping families deal with grief: “The signs and symptoms of grief are emotional, physical, behavioral, and cognitive.”

The cognitive symptoms include preoccupation, confusion, and an inability to concentrate. She described the major tasks of grief as:

  • Accepting the reality of the loss;
  • Experiencing the pain;
  • Adjusting to an environment in which the deceased is missing;
  • Withdrawing emotional energy from the deceased and reinventing it; and
  • Writing a new story for one's life.

“As grief decreases, acceptance increases,” she said. She defined acceptance as “a sense of inner peace and tranquility that comes with the letting go of a struggle to regain what has been taken away — The only way out of this is resilience; that's the way we restart our lives.”

When Alyssa G. Rieber, MD, was 21 and a first-year medical student at the University of Alabama School of Medicine, she was diagnosed with Stage II Hodgkin lymphoma. At the ASCO meeting, she told the audience that this personal experience has given her a valuable perspective on treating the patients she sees today as Assistant Professor in the Department of General Oncology, Division of Cancer Medicine, at the University of Texas MD Anderson Cancer Center.

While a medical student, Rieber underwent four months of chemotherapy and then radiation, managing to continue on with her classes.

Unmarried at the time of diagnosis, Rieber learned how it feels to be a patient. Her mother, who did not cook, “started cooking like crazy,” Rieber remembered, in order to fill her daughter with nutritious food. “She would cook and I would throw food away,” Rieber said. She lost her appetite and had a metallic taste in her mouth. “I lost my hair, and everybody was concerned.” She resorted to wigs, “which are always too hot and itchy, and you end up wearing a hat anyway,” she remembered.

Rieber, now married with two young daughters, said that today when she interacts with families as an oncologist she tries to bring “honesty, empathy, encouragement, and hope.” She noted that “being able to talk to the person [oncologist] as someone who's gone through this is very helpful,” and that “Sometimes hope is all we have to offer to get them through the day.”

She said her experience as a cancer patient has helped her better understand the following:

 

  • The family response to a loved one's diagnosis of cancer brings shock, fear, and anxiety for everyone, and coping is different for everyone;
  • Family members have a heightened sense of their own mortality;
  • There may be a concern among some family members that cancer can be “caught,” especially among children (who need a careful explanation on their own level that cancer is not infectious);
  • The time to treatment seems extremely long to families, who have a sense of urgency; this requires taking the time to give an explanation of the steps needed to determine the best treatment before therapy can begin;
  • The family has concerns about the cancer patient's physical changes, such as weight loss, which can lead to battles over nutrition—wanting to feed the patient when he or she has no appetite and cannot eat. “I tell the patient, ‘Drink a shake,’ and I tell the family, ‘Back off,’” Rieber said;
  • The end of treatment doesn't necessarily mean a return to normalcy: “Just because treatment is over, that doesn't mean patients are back to ‘normal.’ Many people don't just bounce back,” Rieber said;
  • The end of treatment does not mean the end of worry, and of “the anxiety that never goes away.” The cancer survivor may feel that “every little lump is cancer until proven otherwise. The patients will have that forever.”

Source: http://journals.lww.com/

Topics: stories, oncologists, personal, cancer

‘Semi-Invisible’ Sources of Strength

Posted by Alycia Sullivan

Wed, Jun 19, 2013 @ 02:08 PM

View Video Here

My mother was a nurse, the old-fashioned kind without a college degree, first in the class of 1935 at the Lenox Hill Hospital School of Nursing in New York City. Her graduation was announced in The New York Times, and her name was listed in the commencement program — Estelle S. Murov, in gold letters on ivory vellum —as the valedictory speaker, to be followed by the Florence Nightingale Pledge, presentation of prizes and diplomas, benediction, recessional and a reception and dance at the Hotel Astor.

In the dozen years that followed (until my birth), she wore a blue flannel cape and a starcheddescribe the image white cap while presiding over the preemie nursery at Lenox Hill, long before the days of neonatal intensive care units. The glory years for nurses, my mother always told me, were during World War II, when most of the doctors were away and real responsibility replaced being a handmaiden.

With this as my background, I am hardly a disinterested reviewer of a new anthology of essays by 21 nurses. It is beautifully wrought, but more significantly a reminder that these “semi-invisible” people, as Lee Gutkind calls them in this new book, are now the “indispensable and anchoring element of our health care system.”

Today, there are 2.7 million registered nurses working in the United States, compared with 690,000 physicians and surgeons. That number is expected to grow to 3.5 million in the next half dozen years, Mr. Gutkind writes in his introduction, as members of the baby boom generation require hospitalization and home or hospice care.

After he had selected 21 essays from more than 200 submissions, Mr. Gutkind had personal experiences that drove home the very thing the nurses wrote about over and over. He spent several months at others’ hospital bedsides — his mother, 93; his son, 21; his uncle, 86; and a friend, 72 — and rarely saw a physician.

Though it is the doctors who are considered “deities,” he writes, it was the “irreplaceable” nurses who were a source of comfort and security during his family’s multiple trials. And yet by his own admission he took them for granted — “I cannot not tell you what any of the nurses looked like, what their names were, where they came from” — which is exactly the state of affairs my mother described 65 years ago.

She would have loved this book, and no passage more than the one in which Tilda Shalof, a nurse for 30 years and also a best-selling author, describes “the ongoing tension between the university-educated nurses like me and the old guard, the hospital-trained, diploma-prepared nurses.”

The latter, she argues, are preferable. “Maybe those veterans didn’t know much about research or nursing theories, but they sure know how to care for patients,” she writes. “They knew how to get the job done. I wanted to be like them — a nurse who could start IVs on anyone.”

Many of the nurses who have contributed to this anthology are also part-time writers or bloggers. I would have welcomed some information from Mr. Gutkind, the editor of a literary magazine and writer in residence at Arizona State University, about whether nurse/writers are common and if so why. Perhaps many of them write because they rarely talk about their work, as they point out in these essays, and are encouraged in training and by the medical hierarchy to be tentative, even submissive, in their communication with doctors.

Several of the essayists describe their duties as tedious but the implications as profound. Eddie Lueken, a nurse of 30 years who also has a master of fine arts in creative writing, described her student years, earning tuition money busing tables at a steakhouse where she had to wear a cowboy hat and went home smelling like A.1. sauce. She yearned for the adrenaline rush of paddling people back to life; instead, she wound up mastering bedmaking, denture care for the terminally ill and measuring the diameter of bed sores.

describe the imageHer first opportunity to give an injection involved morphine for a woman with metastatic breast cancer, her respiration already so low that the narcotic might kill her. For that reason, the night nurse had skipped the patient’s scheduled pain medication.

Now Ms. Lueken’s supervisor was leaving the decision to her: “Crossing her arms, she looked me in the eye” before asking, “ ‘Should you give a dying woman with advanced bone cancer her pain medication, or withhold it because she may stop breathing?’ ”

“I’ll give it,” Ms. Lueken said, mostly because it was more exciting than “turning patients like they were logs.” Her reward: “Good job” written in a neat hand on her daily clinical evaluation, and the news from the charge nurse the next morning that her patient “went quietly” just a few hours after she had left for the day.

Never in her essay does Ms. Lueken say that what she had done was good nursing. But another nurse, Thomas Schwarz, also a published writer, effectively does it for her. He chose, at 63, to switch from nursing in emergency rooms to working the quiet night shift of a home hospice nurse.

“Everyone I’ve ever known, loved, kissed, sat next to on a bus, watched on TV or hated in the third grade is going to die,” Mr. Schwarz wrote. “Everyone. And I am the midwife to the next life for some.”

Jane Gross, a former reporter for The New York Times, is the originator of The Times’s blog The New Old Age: Caring and Coping.

Source: The New York Times

Topics: book, essays, stories, healthcare, nurse

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