The Mesothelioma Cancer Alliance would like to thank Rev. Deborah Vaughn for sharing her experiences with mesothelioma, and cancer in general, as a professional chaplain as the May Advocate of the Month. Rev. Vaughn loves spending time with her husband and daughters, and enjoys gardening and cooking. You can read more about her experiences and stories on her blog, An Unfinished Symphony.
MCA: Tell us a little about your experience with mesothelioma.
Rev. Vaughn: I have to be somewhat careful here, because as a chaplain, I have access to private and personal information. I would never divulge something that is privileged medical information. I consider it a sacred privilege to be a chaplain, and take my role, and the confidentiality that comes with my position, very seriously.
I first learned about mesothelioma when a close friend’s father was diagnosed with the disease. He had worked in an industry which gave him prolonged exposure to asbestos. When we were told he had malignant pleural mesothelioma, stage 4, it sounded bad. We really didn’t know much about the disease and spent some time reading up on it. The news was devastating for all of us. He was diagnosed in late November, and died in February. There was little that could be done for him except palliative measures and the support of hospice.
Several years later, I was working as a professional chaplain and was assigned an outpatient oncology unit as part of my clinical practice. I met several patients and families who were grappling with the effects of mesothelioma and their treatment protocols. As a chaplain, I was a companion, a friend, and if they wanted it, a spiritual guide. Mostly, I just listened to their stories and supported them and their families in end-of-life decisions and spiritual struggles. There were tears and laughter, silence and animated conversation, prayers and hymns. At times we meditated together, or I helped them with relaxation imagery. One individual was not from any faith background at all, but he welcomed the opportunity to find a place of quiet and hope within him. All except one of these individuals has since died. I often think of them and their families and the impact they had on my life.
MCA: Has cancer affected you in some way? If so, in what way? Tell us about your experience.
Rev. Vaughn: I grew up in a household where conversations about diagnosis and disease were commonplace. My dad was a pathologist and would tell us about the things he saw. Even though I was not really interested in medicine as a career, I learned vicariously. One sister and one sister-in-law are both physicians, and as they went through medical school, there were many discussions about life, and death, and how disease was managed in between. I learned about risk factors for cancer and how some very simple measures could reduce my personal risk (such as not smoking, and reducing environmental exposure to toxins like radon and asbestos.)
My dad had non-Hodgkin lymphoma and died in February 2000. Even though other close family members had passed away previously, and I had worked for several years in long-term care and acute care settings, his death was the first that touched me deeply and personally. From the earliest stages of his diagnosis, I understood that there might be periods of remission, and that he had about a 60% chance (at that time- now according to the NCI website, the 5 year survival rate is 69.3%) of surviving 5 years after his diagnosis. Dad lived almost 6 1/2 years after his diagnosis and staging, enjoying the arrival of his sixth grandchild. We all still miss him.
I have had other close family members die from complications due to their cancer diagnosis, and other family members who have come safely through their diagnosis and treatment. I’ve learned that depending on the kind of cancer, and the stage at which it is diagnosed, there are different options and means of treatment. And as new protocols are developed, there is hope for remission and becoming “cancer-free.”
MCA: How has this shaped you as the person you are today?
Rev. Vaughn: I understand how the word cancer can be terrifying. Many forms are treatable, and even “beatable.” But the best treatment is prevention and early detection.
While cancer has lost some of its mystery for me, it can be a personally unsettling matter. I get my screenings and tests for breast cancer every year without fail since I have close female relatives who have had breast cancer. And after a few interesting mammograms which required follow up tests, I have struggled with fear. I was afraid that I could have cancer. It’s disconcerting. I felt vulnerable and not in control. I was so grateful for every negative scan since then.
When I walk into a hospital room or a treatment area, I try to let my patients and their families know that I am concerned about their wellbeing. I don’t know how they feel about their cancer diagnosis because each of us takes the news differently, and has to face a different treatment path. But I am available to listen to them and to help them sound out what they want to focus on as individuals for this stage of their life. We talk about ways that they can find strength and purpose, and even meaning in their illness. They frequently share their concerns about being a “burden” to their families, and yes,sometimes they are angry that they are ill.
My role as a chaplain is to support them in this journey of illness and sometimes healing. But more than “fixing” their emotional or spiritual state, I am, very simply, a companion. I encourage them find ways to live life to the fullest, even with treatments and doctors appointments filling their lives. I learn so much from my patients and their families. And many times, there are Divine moments where I experience how my own faith is strengthened by their courage.
MCA: If you could say one thing to the world about cancer or mesothelioma specifically, what would it be?
Rev. Vaughn: Take care of yourself! Eat right. Exercise. Don’t smoke. Avoid toxins, like asbestos. Most important of all, if you sense that something isn’t “right” with your body then talk with your physician. You are a person of worth and value and you deserve care and treatment.