I’ve been the caretaker for my husband Will since he suffered three strokes in March 2011, followed by a diagnosis of leukemia a few months later. Now, our roles have reversed, and Will is taking care of me as I go through treatment for stage III follicular non-Hodgkin lymphoma (NHL). It’s been a difficult transition from caretaker to patient, but our mutual dependency has brought us closer.
Getting Used to the Idea
My cancer was diagnosed just a few months ago, and I’m still getting used to the idea of having an incurable disease. My oncologist believes that I will go into remission after I finish my regimen of R-CHOP (rituximab [Rituxan], cyclophosphamide, doxorubicin, vincristine, and prednisone), and my latest PET scan shows that the treatment has already shrunk swollen lymph nodes in my neck and abdomen, although an enlarged lymph node pressing against my kidney remains unchanged.
When I first found out that I had cancer, like many women, I was concerned about losing my hair during treatment. Long and blond, my hair was always a source of pride. So before I started chemotherapy, I got a buzz cut to avoid the shock of seeing long locks of hair in the shower drain or on the bathroom floor. I discovered that losing my hair was no big deal.
I think the most troubling side effect so far has been chemotherapy-induced premature menopause and the attendant hot flashes and emotional roller coaster caused by fluctuating hormone levels. I wasn’t prepared for that.
Living With Cancer
There are so many aspects of having cancer that most healthy people don’t understand. It’s not just that the first day of chemo is hard and you feel exhausted for days afterward, or that suddenly you can’t feel your fingers because they are numb from peripheral neuropathy—another R-CHOP side effect. It’s all the daily rituals I have to perform, like cleaning out the peripherally inserted central catheter (PICC) line in my arm and making sure to securely wrap it in plastic before I take a shower. Or not knowing from one day to the next which foods might turn on me. With cancer, every day is a new experience.
Still, having cancer has also been a blessing in some ways. It’s taught me not to worry so much about how I look or what other people think of me. Since my diagnosis, some friends have stayed away because they are fearful of seeing me as this new person going through cancer treatment. But I’ve learned that what really matters is not what people can see on the outside—it’s what is going on inside. I have a respect and love for myself I didn’t have before my diagnosis, and I value myself more. I listen to my body, and on those days when I’m feeling exhausted, I rest and don’t push myself to do more than I can.
Facing the Future
I’m fortunate because I have a wonderful oncologist who carefully explains in language I can understand the course of my lymphoma and what I can expect in the future in terms of recurrence. The day I was diagnosed with NHL, I was admitted to the hospital so I could start chemotherapy the next day. Everything was happening so quickly, there was no time to think or make the mental adjustment of going from being a healthy person to a person with cancer. If my oncologist hadn’t taken the time to answer all my questions and reassure me that I would be fine, I would have been terrified. Instead he made me feel secure and able to cope with what was happening to me.
Except for worrying about what I will do when Will passes away—he has end-stage congestive heart failure—and I no longer have his support, I have no fear about my disease. I don’t know what each day will bring, but I’m proud to say that I’m a cancer survivor. ■
Cindy Johnson is a history professor at Cisco College in Cisco, Texas.