When were you diagnosed with Hodgkin lymphoma?
It was 1987, and I was driving home from work when I reached up to scratch the side of my neck and discovered an egg-sized lump. “What is that?” I wondered. I was 20 at the time, and when I arrived home, I asked my mom, a nurse, to take a look. She turned white. I was soon being examined by our family doctor, who took x-rays.
We sat in the waiting room, awaiting the results, which he brought over and held up to show us that my chest cavity was white; it was full of disease. Two weeks later, I went for a surgical biopsy, which is when we found out it was Hodgkin lymphoma. This was followed by a slew of tests: barium drinks, CT scans, a bone marrow biopsy and a lymphangiogram, which left polka-dot tattoos on every toe that are still visible today. Then there was the staging laparotomy, performed to determine the extent of disease, followed by surgical removal of my spleen, which was brutal. I spent eight days in the hospital and remember a kind, gentle doctor sitting on the side of my bed and saying “I am going to take good care of you and get you well.”
Then was it time for radiation therapy?
Yes, which started by having a roadmap painted on my face, chest and abdomen; I was told I couldn’t wash it off. I looked like a warrior going into battle. And I was going into battle: I was undergoing mantle and abdominal radiation treatments, which lasted for three months. I lost half my hair, slept all the time and couldn’t eat. My skin was burned. Back then, there were no support groups, there were no websites and no Facebook groups. I remember seeing the pain in my parents’ eyes as they watched me suffer through severe nausea and weight loss. It was like a bad dream that I needed to escape. And I did escape, because I was cured of the cancer.
From there, you headed into your adult years?
Yes, although I have no idea how I managed to do that emotionally. The two after-effects of treatment that I suffered were extreme fatigue and tachycardia—a rapid heartbeat. Five years later, I got married and, by 1997, I was pregnant. My ob/gyn hugged me and told me she thought the radiation had left me infertile. I gave birth to two sons and lived my life full of energy and good health. I had faith, and I never looked back.
But 18 years later, our eldest son was diagnosed with non-Hodgkin lymphoma. I was reliving my own diagnosis all over again, but it was worse because it was our son. He had chemotherapy, and his cancer went into remission. I often wondered why I had Hodgkin’s. I think it was so that I knew how to get my son through his own diagnosis and treatment.
Did things calm down for you then?
Three months after my son was pronounced “cured,” I was told that I had severe aortic stenosis, a result of my aortic valve being damaged by radiation, and required immediate heart surgery. We had just been through hell with our son, and life was busy again. I didn’t have time for heart surgery and recovery. It was my 50th birthday, and I said to my surgeon “Just promise me I’ll be at my son’s graduation.” He promised I’d be there, so we bought me a birthday cake and decided on faith over fear. I had the surgery in March 2017 in my hometown of Indianapolis.
How is your health today?
I’m currently stable, although living with fluid in my lungs, which is controlled with medication. I’ve found that keeping active is the best treatment. All the cancer events left me with mild post-traumatic stress disorder (PTSD) and the realization that life is fragile. I often feel the need to live with urgency, but I need to remind myself to slow down and take it one day at a time because the urgency moves faster than my body will allow.
Have you benefitted from finding Hodgkin’s International and other groups?
I found Hodgkin’s International about three years ago, then Facebook support groups for long-term survivors of Hodgkin’s. I started reading about what other people were going through, but I never thought that heart valve symptoms would happen to me. When I started posting on these sites that I was diagnosed with aortic stenosis, so much support came my way! I will be forever grateful for these groups of survivors who walk alongside me. I hope to meet every one of you someday.
I know this: you can choose to live your life in fear—thinking all the late effects will happen to you. Better to embrace your life and what God has given you. Choose faith over fear.