Just like many other nurse navigators, there was a pivotal time in my life when I knew I wanted to dedicate my career to cancer. As a young, altruistic senior in college, I was set to attend medical school, become a surgeon (yes, this is what I really wanted to do) and save the world. Unfortunately, life does not always go as planned and you have to take these as opportunities to truly define who you are and what path you will follow.
The Moment That Changed My Life
I can still clearly remember that day 23 years ago. It was April, and I was studying for finals during the last semester of my senior year in college. My mother, who was undergoing imaging twice a year for fibrocystic breasts, called to let me know she was having a biopsy, and told me not to worry. But the first thing you do is worry! Something felt wrong, and I decided to drive home and be there when my parents returned from the procedure. They walked in the door, both looking sad and defeated, and all I could do was hug them and cry.
My mother was 49 years old at the time and had endocrine-negative lobular breast cancer in the left breast with 18 positive nodes. That is enough to knock the optimism out of you. My mother was given several treatment options: mastectomy followed by 6 cycles of chemotherapy (neoadjuvant therapy was not an option at the time), radiation, and, because physicians thought she had a 75% chance of dying in the next 5 years, another treatment option she had to consider was a bone marrow transplant. Unfortunately, when these options were laid out before her, all she heard was “you have a 25% chance of still being alive in 5 years,” so she decided to get a bone marrow transplant. As a family, we supported her decision but also sought second, third, and fourth opinions. We also looked at transplant programs and clinical trials across the country. The Internet was not a resource at the time, and this process involved a lot of phone calls and office visits.
Because I was just graduating, I was ideally suited to take a year off and care for my mother during her journey, which included 3 months of an inpatient transplant protocol at the University of Nebraska. On October 31, 1994, my mother was started on high-dose chemotherapy and I became her navigator. Taking my job very seriously, I double-checked everything, did research at the library, and had a stationary bike brought into her room—I would hold her on it so she could peddle. I also fed her Dove bars, which is all she could eat at the time.
Caring for my mother changed that year of my life.
Transitioning to a Lifelong Vocation
After 1 year of treatment, she was ready to get her life back, and resumed teaching high school biology the following year. She was ready to move on, but my transition was not so easy. My life plan had changed and I wrote a letter to my now mentor, Carol Fabian, MD, from the University of Kansas Medical Center, and told her that I wanted to work in breast cancer research. “If you do not have any money to pay me, that’s OK,” I wrote. “I will figure it out.” To this day, she still has this letter. She has been my mentor for almost 2 decades, and together, we make a formidable team.
I did complete my education in a nontraditional way, working full time and completing 3 advanced degrees from the University of Kansas. I had the amazing opportunity to work with several strong women mentors, in addition to Dr Fabian. I also helped build the Breast Cancer Prevention Program at the University of California, San Francisco with Laura J. Esserman, MD, MBA. These leaders in breast cancer motivated me and taught me invaluable life and career lessons.
Improving Access to Quality Care
Today, my mother continues to thrive and be the source of my motivation to improve access to quality care for cancer survivors. With the Commission on Cancer (CoC) standards looming, my journey has prepared me to help my organization meet the standards: 3.1, patient navigation process; 3.2, psychosocial distress screening; and 3.3, survivorship care plan.
My role at the University of Kansas Cancer Center, a National Cancer Institute–designated center, includes being an Associate Professor of Medicine, Division of Clinical Oncology, the Director of Cancer Survivorship, a cancer risk counselor, and an entrepreneur as the founder and CEO of Cancer Survivorship Training, Inc. These clinical, research, and entrepreneurial hats provide me with the access to help our organization meet national benchmarks to ensure quality care to our patients and their caregivers. This task is daunting and sometimes feels impossible.
My philosophy focuses on how to improve the quality and quantity of life for cancer survivors from the time of diagnosis to the rest of their lives. The CoC standards push us to integrate best practices. This sometimes feels like an impossible task to undertake, especially with shrinking resources, the sheer volume of the different moving parts in the clinical workflow, as well as the limited functionality of electronic health records to include navigation notes, patient-reported outcomes (eg, distress screening), or building survivorship care plans. The functionality of health records is changing, but not in time for 2015.
AONN+
I am the most recent member of the Academy of Oncology Nurse & Patient Navigators (AONN+) Leadership Council, with the expanded focus on survivorship.
AONN+ is well-suited and has taken on the challenge to facilitate the sharing of best practices and providing resources to help each of us meet our responsibilities. I am honored to be part of such a forward-thinking organization as AONN+ and feel it is consistent with my career path.
Thank you for letting me share my journey and hope we will continue to collaborate with the goal of improving the quality and quantity of life for cancer survivors.
