Nancy Humes Masterson Believes “We Are Stronger Together”
“All of these ‘meet-ups’ with fellow HL survivors and their spouses have had a significant impact on my life. I now know that I am NOT alone.”
1. When were you diagnosed with Hodgkin lymphoma?
In 1991, I was a young nurse, and I found a lump, which is how my Hodgkin lymphoma was discovered. I was treated with only radiation therapy since I’d had a staging laparotomy with splenectomy. Then in 1997, I discovered a lump in my groin area; I had a recurrence of Hodgkin’s.
But I was initially told I had non-Hodgkin lymphoma, and there was no treatment available. I went for a second opinion, where they said it was a recurrence of Hodgkin’s. So I went to the National Institutes of Health for a third opinion; their opinion was that I had a recurrence, and I began ABVD chemotherapy (adriamycin, bleomycin, vinblastine, dacarbazine).
After three months of chemotherapy, I got married. Although my menstrual cycle had stopped during chemo, I soon became pregnant; my daughter was born in 1998. I went on to love my life and had two more daughters while working full-time as a nurse.
In 2004, I became very sick with multi-system organ failure and had enlarged lymph nodes. The doctors assumed it was cancer—perhaps lymphoma—but lymph node and kidney biopsies revealed sarcoidosis, an autoimmune disease. I was treated with high-dose steroids.
2. Have you experienced late effects as a result of your treatment?
Throughout my post-treatment years, I have experienced many late effects, which include thyroid problems, swallowing issues, reflux and several heart complications, including mitral regurgitation and a bicuspid aortic valve. I was diagnosed with heart failure in 2011. I work diligently to keep myself out of the hospital through a regimen of diuretics and other cardiac medications, wearing compression stockings, 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 and chemotherapy-induced peripheral neuropathy. 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.”
3. And what does that life look like?
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 firsthand what you’ve endured.
4. Have you managed to connect with other survivors?
Yes. I’ve been fortunate to meet other Hodgkin’s survivors over the past few years, and I’ve had countless conversations with several more. I met Rita Buskirk, Karen Crossley, Lisa Gerhart, Dolly Griffin, Sandi Liberatori, Cathy Pipcho and Michelle John Wright. We would gather at a restaurant to share a meal and 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 has more than 990 members. It has become a place for HL survivors to form friendships and talk about almost anything—not just health-related issues.
5. Do such friendships mean a lot?
They do. The reality of the late effects we experience 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 to be “friends for life.” In 2016, Lisa Gerhart passed away from complications after heart valve replacement surgery. Later that year, we lost Dolly Griffin due to breast cancer. Just two months later, another friend and survivor, Davina Klatsky, died of pulmonary failure, just hours before I arrived at the hospital to visit with her. I was there with Erin Cummings, founder of Hodgkin’s International, who I was meeting for the first time.
6. Among Hodgkin’s survivors, each friendship seems to lead to another one.
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.
Every one of our featured survivors has something unique to share. From diagnosis to treatment to life after treatment, their experiences with Hodgkin lymphoma convey insight and offer inspiration. We are grateful to each of these individuals for their willingness to share their story.