I was diagnosed with Hodgkin’s Lymphoma twenty-six years ago and was treated with radiation therapy. I am now fifty-two years old. I had a recurrence of the disease twenty years ago, which required ABVD chemotherapy. In the years that followed, I have gone on to live my life as a wife, mother, sister, friend, and co-worker. I became a nurse and worked in hospitals and healthcare companies for about twenty-four years.
Throughout my “post treatment” years, I have experienced many “late effects”, which include thyroid problems, swallowing issues, reflux, and several heart complications involving the muscle, valves, and conduction system of the heart. I was diagnosed with heart failure six years ago. I work diligently to keep myself out of the hospital through a regimen of diuretics and other cardiac medications, compression stocking usage, reducing salt and fluid intake, and conserving energy when needed. My other late effects are neck, shoulder, and upper back muscular atrophy and pain, vocal cord issues, basal cell skin cancer, carotid artery stenosis, chemotherapy-induced peripheral neuropathy, and several heredity conditions. After developing heart failure, I went on permanent disability. While I no longer work as a nurse, I’ve come to realize that all my nursing experience has, ironically, prepared me for a life as a “permanent patient.”
I now spend my time doing what I need to do to care for myself and my family, which includes my husband and three teenagers. I keep up with my medical appointments, and I exercise in a warm water pool three times a week to work on range of motion, balance, and core strength. While I love getting together with friends and family, one of my favorite things to do is to connect with other Hodgkin’s survivors. There’s nothing like a hug from another survivor! It’s in those hugs that you will find acceptance and a sense of belonging from those who know first hand what you’ve endured.
I’ve been fortunate to meet other Hodgkin’s survivors over the past two years, and I’ve had countless conversations with several more. I met Dolly Griffin, Karen Crossley, Lisa Gerhart, Sandi Liberatori, Rita Buskirk, Cathy Pipcho and Michelle John Wright. We would meet at a restaurant, share a meal, a ton of laughs, and celebrate the fact that we were all survivors of Hodgkin’s. One of those gatherings led to the development of a new Facebook group, “Living Life After Hodgkin’s Lymphoma,” which would be a place for HL survivors to form friendships and talk about almost anything, and not just health-related issues.
The reality of our late effects and the damage they can cause, no matter how courageous we may be, hit home for me when we lost some of the very people I had just met and considered “friends for life.” In 2016, Lisa Gerhart passed away from complications after heart valve replacement surgery. In September of that year we lost Dolly Griffin, from breast cancer. Just two months later, another friend and survivor, Davina Klatsky, died of pulmonary failure, hours before I arrived at the hospital to visit with her. I was there with Erin Cummings, who I was also meeting for the first time.
All of these “meet-ups” with fellow HL survivors and their spouses have had a significant impact on my life. Together with the Facebook support groups I’m involved with, I now know that I am NOT alone. What’s more, I am better able to deal with my late effects just from hearing how others have dealt with them- understanding what advice they’ve been given, what resources are out there, and what is important for my own medical team to know. I’m Nancy Humes Masterson, and I am “living proof” that we are stronger together.
Nancy Humes Masterson.