The Next Chapter in the Breast Cancer Journey: Transformation
Donna DeGracia, MS, PA-C
October 3, 2022
It is only when you can truly see the pain of others that you can understand and help them heal. The pain you understand the best is the pain you have experienced yourself.
When I was first diagnosed with breast cancer, my eyes were suddenly opened to my own ignorance and lack of understanding. As a clinician and an educator, I went to work to learn more. I interviewed patients, survivors, and family members of those who lived and those who died, as well as oncology providers. I processed my own journey as a patient by writing and combining my own story with those of the people I had interviewed and with the poetry that others had written to process their own pain.
I wrote my book, Reconstructing Hope: Intrusions, Oxymorons, and Transformations in the Breast Cancer Marathon, as much to heal myself as to touch others. The book has touched others, but it has also changed my life in ways I never could have imagined. It has opened the doors to new life adventures and has introduced me to amazing people who have also had their lives transformed by breast cancer.
Shortly after the book’s publication, I joined the education committee of the Breast Cancer Education Association (BCEA) and was subsequently invited to join the board of directors. I am currently the chair of the education committee and the vice president of the organization.
One of my favorite parts of my involvement has been working with the Breast Cancer Champions, a group of African American and East African women who work in their own communities to provide education and organize free breast cancer screenings and health fairs. This group of women approaches their work with energy, dedication, and a sense of fun. Their events often include cooking demonstrations, free lunch, music, speakers, door prizes, and sometimes even hula hoop lessons. Many of the Champions are breast cancer survivors themselves. One of the most enthusiastic is a three-time survivor who was first diagnosed at the age of 29.
The energy of the Champions is contagious. Their work in addressing disparities around breast cancer knowledge and screening inspired me to work with faculty from the PA program at St. Catherine University in St. Paul, Minnesota, where I taught for over a decade, to secure a grant and conduct focus groups to further explore barriers to breast cancer screening in minority communities in our area. Some of our findings were eye opening. We are in the process of disseminating our findings through conference presentations and planning for publication. This collaboration between the PA program and BCEA opens the door for students to learn about and become involved in the work around decreasing health gaps and improving equity.
The next step is to revise existing educational products and produce new ones that better fit the needs of communities where disparities are greatest. This work provides a wonderful opportunity for interprofessional education that is meaningful to both students and the greater community. To date, student involvement has been confined to PA and public health students, but the next phase could involve many others, including language and art majors as well as students in other health professions.
When I was first diagnosed with breast cancer, I focused on my own journey and on learning about the disease. I felt isolated. I was poorly equipped to understand the changes in my body, how they would affect my future, and how to support my family through their own fear related to my prognosis. Educating myself empowered me not only as a patient, but also as a medical provider, an educator, and a community leader. My own pain and fear grew my compassion and understanding for the patients I served. Sharing my journey with students helps them to be more understanding and compassionate providers, as well as provides them with knowledge needed for comprehensive survivor care. My work in the community is more than service to a particular organization. It utilizes the skills I have learned over decades as a medical provider and educator to refine the work we are doing. But more than that, it adds richness and purpose to my own life.
The title of my book is Reconstructing Hope: Intrusions, Oxymorons, and Transformations in the Breast Cancer Marathon. My own marathon has taken me through all these stages. At first breast cancer was a painful and frightening intrusion on my life. One of the poets I quoted in my book said that breast cancer is an oxymoron because it is the worst thing to happen in a life, but also the best. I have experienced that oxymoron and am now in the stage of transformation. The marathon is not over. While I was writing my book, I had a second breast cancer diagnosis. I called it field research. I don’t know where the marathon will take me next. All I know is that my life will never be the same. Breast cancer has forced me to grow and change. It has taken me down paths I never expected: paths that are not always easy, but are steeped in beauty.