The Wall of Fame - A Sarcoma Survivor Project

by

Tamara Barnes, RN, MSN, CNS, AOCN

Advanced Practice Nurse

Sarcoma Medical Oncology

M. D. Anderson Cancer Center

Houston, Texas

Introduction

I’ve been a cancer nurse for 20 years. I have exclusively treated sarcoma patients for the last seven years. But before that, at age 19, I was the Sarcoma patient.

The college co-ed with a cancer no one had heard of and few physicians had treated, I had Ewing’s Sarcoma. Everyone thought I was going to die.

I needed treatment by experts and that required quitting school and moving to another state. My mother, as primary caregiver, moved with me, while my father stayed home to run the family business and take care of my two younger siblings. My family and I experienced first hand the isolation and fear of a sarcoma diagnosis. Now as the nurse, when my patients express these feelings, I understand.

But one day in 2003, a patient became quite exasperated in the exam room and said, “I don’t know why I am going through all of this horrible treatment. No one lives anyway. I’ve never met anyone who survived this disease so what is the point?”

The physician replied, “Well sure, your nurse right here that has been taking care of you for the last year is a long-term Sarcoma survivor of more than 20 years. Of course people survive.”

The patient looked at me, stunned. “What? And why isn’t that fact tattooed on your forehead? How in the world are any of us supposed to know that?”

At that moment, I realized that understanding their feelings wasn’t enough. I needed to do something. Sarcoma survivors are not sitting in the lobby of the doctor’s office sharing their stories with the newly diagnosed. They are out in the world, living and thriving.

How could this be communicated to the patients who needed hope and inspiration?

It just so happened that the patient with whom we had this conversation was a very accomplished person in the world of marketing, and had many ideas about how we could communicate the hope of survival, ranging from a poster series to honorary survivor seating in our small lobby.

Together with the Sarcoma Clinic social worker, we wrote a grant requesting funding for what became known as “The Sarcoma Survivor Project.” Our project involved profiling long-term sarcoma survivors living and enjoying an active, fully productive life demonstrating not only surviving but thriving. Part of our goal was to show that many people lived with Sarcoma as a chronic illness while others did experience the hoped-for disappearance of any signs of the disease.

Ideally, the project would have occurred without interruption but readers who wish to create similar projects in their local Sarcoma communities will be well advised to anticipate the politics and interests that will affect their success. 

In our case, we encountered a maze of departments needing to protect their ad campaigns, ensure brand consistency and prove the value of their professional consultants. All of these groups had to be navigated to prevent the project from being killed. Even at the culmination of the project, the art department declared that the survivor posters could not be in public spaces (like the Sarcoma clinic lobby) outside the exam room halls because they might be upsetting to people. Those areas were to be reserved for more meaningful fish tanks and impressionist prints.

After navigating all these interests groups, almost a year later we were granted enough funding to professionally profile 21 survivors, about $6,500, for the framing and minor expenses. Our marketing specialist patient had secured numerous donated services, such as graphic design, professional photography and laboratory services. She volunteered herself and her staff for copywriting, unveiling event logistics and project management. At full cost, especially if we’d been unable to circumvent an institution requirement that we use the NY photographer and ad agency contracted by the hospital, the project would have demanded a budget of $85,000.

With our pro bono services and miscellaneous funding in hand, we began the task of evaluating a long list of survivors to choose a wide variety of sarcoma diagnoses, ages, ethnicities, careers, treatments, including people who had survived metastatic disease and recurrences as well as those who’d had one bout with a tumor, never to see it appear years post-treatment.

Our goal was to obtain a cross-section of people so when a newly diagnosed patient came to the clinic, they could identify with at least one of these featured survivors in some way. Our hope was that the newly diagnosed patient and family, as well as those currently undergoing therapy, could find the strength, courage and encouragement they needed to comply with their recommended treatment rather than give up hope. Maybe these profiles could ease the feelings of isolation so when someone asked, “Sarcoma? What’s that?” they wouldn’t feel so alone.

Personally, I too reserved some level of fear during the project that some patients and families might indeed find the posters upsetting. As we all know, not everyone survives. But then that fact we all know. The fact that people survive Sarcoma clearly wasn’t known.

To efficiently produce the series, our patient project-instigator telephone-interviewed each of the survivors and wrote their inspiring stories in a paragraph. Annual patient scans were scheduled to allow our 21 survivors to have their portraits taken in our department training room with a prop relevant to their stories in a two-day Fall and Spring photo session. The survivors were thrilled with the concept and made numerous personal concessions and sacrifices to be part of the project. Though they’d never met, they hugged as if at a high school reunion – none of them eager to leave the clinic. Our staff circled through the halls nearby, and an air of excitement filled the clinic. In fact, the administrative director reported that the presence of these survivors and the professional photographer had had a profound impact on the department staff, whose days normally involve more somber events.

My fears of offending or hurting some patients were alleviated the night of the poster unveiling ceremony. Everyone who attended, including families who had lost someone to sarcoma, loved the project and the message. Though the mourners wished their loved ones were still here to be featured in a poster, they expressed the sentiment that had these posters been here while their loved one was struggling through treatment, the posters would have given them the hope and inspiration that they had so desperately needed.

Additionally, one of the professional services donated were those of a research firm that compiled a survey instrument to determine the effect on patients and family members who saw the posters while they waited for their appointments. Overwhelmingly, the respondents reported that the clinic poster series gave them hope for their outcomes, reassured them that their choice of medical treatment team was right, and helped them decide to follow their physicians’ recommended course of treatment.

Today, the posters line the clinic walls permanently. The patients have coined it “The Wall of Fame.” On a daily basis patients and families walk the halls viewing the pictures and reading the survivor stories. It’s like our own little gallery. Physicians and nurses will sometimes provide a guided tour to newly diagnosed patients showing them someone who has survived the disease they are currently battling. Every day you hear a patient say, “Someday, I want to be on your wall.” 

And because being on that wall is one of the real possibilities, we believe that our poster series has served its intended purpose: to educate patients that immediate death is not the only outcome from this disease. There is hope, and as we view the survivor stories, we bask in that hope together.

The Wall of Fame

Click on the thumbnails below to view the posters that make up the Wall of Fame. Each poster is a PDF document.

[Editor's Footnote: I met Tami at the CTOS meeting which was held last November. She had a presentation in one of the poster sessions titled, "Promoting Hope: Sarcoma Survivor Awareness Project". I was immediately was captivated by the poster and asked her is she would write an article about the project for ESUN. After reading her article and viewing the above posters, I hope that others might be inspired to undertake similar projects. You cab download a copy of her CTOS poster by clicking here.]

V4N3 ESUN Copyright © 2007 Liddy Shriver Sarcoma Initiative.