“I really had no idea what Hodgkin’s disease was. I was young, naive and living in the pre-internet era.”
When were you diagnosed with Hodgkin lymphoma?
It was 1982, and I was a 21-year-old, newly married graduate student, taking a full load of classes and working full-time. Feeling tired was par for the course—my “new normal.” During an annual physical exam, my doctor felt a lump in my neck and told me that if I found another one, or if this one didn’t disappear in a few weeks, I should come back.
The swelling did NOT go away. I returned to my physician, and this time he recommended a biopsy to determine why the lymph node was swollen. He said that it was probably nothing, just my body fighting an infection or possibly “cat scratch fever.” He never mentioned the “C” word. My biopsy was on March 30. Two days later, on April Fools’ Day, I was told that I had Hodgkin’s disease. NOT funny.
How did your treatment go?
I really had no idea what Hodgkin’s was. I was young, naive and living in the pre-internet era. I thought everything could be cured with a shot of penicillin in the buttocks. NOT! After a few days of blood work, imaging and testing, I had a staging laparotomy to determine the extent of the disease. The procedure included a splenectomy. An incision was made from my breastbone to my pubic bone, which enabled my surgeon to see if the disease had spread elsewhere in my body. The result was that I was labeled “HD 2A,” meaning that Hodgkin’s was found in two areas: my neck and chest. The “A” meant that I was without symptoms.
After weeks of healing from the surgery, I began a summer’s worth of radiation therapy. I remember being strapped down to the table so that I wouldn’t move and, somewhere, the smell of cut grass. To this day, I don’t like the smell of cut grass; it reminds me of cancer cells being burned by radiation.
Were you able to continue your education?
During this time I postponed my schooling so that I could take time to heal. My body did heal, eventually, but my marriage was not strong enough to survive. I knew when I was driving myself to radiation treatments that he was not the right one for me. I learned a tough lesson through my diagnosis and treatment. You find out what your friends are made of.
After a two-semester hiatus, I returned to school, completed my studies and received a master’s degree in Applied Behavioral Sciences from John Hopkins University. I also received a whole new understanding of life.
Have you experienced any late effects?
I know that treatment in 1983 was very different than what it is today and that, because of the kind of radiation I received, my body has a higher than normal chance of developing secondary cancers, including breast cancer, as well as heart and lung disease. I’ve been lucky. I was always vigilant about performing breast exams and had both mammograms and breast MRI’s, alternating every six months. In 2014, I was diagnosed with breast cancer—ductal carcinoma in situ (DCIS). It showed up on my second MRI. I had a bilateral mastectomy with reconstruction a year later. No additional treatment was necessary because we caught it early, and it did not migrate to the lymph nodes.
Have you been otherwise healthy?
I’ve had my share of skin cancers, including both basal and squamous cell cancer, all in the radiation field. I am diligent about doctor appointments and vaccinations. I know that without a spleen, I am more susceptible to various illnesses.
After being diagnosed and cured, I will always be known as a blood cancer survivor. Doctors treat me differently after I tell them I’m a survivor. They watch me carefully. Sometimes I can’t help but think that if the disease didn’t kill me, the late effects of the treatment might, even many decades later. I try to be proactive with my body. I exercise, eat healthy, try to reduce stress and get a good night’s sleep.
What is your life like now?
As a survivor, I feel it’s important to “give back.” In 2000, I got involved with the Leukemia & Lymphoma Society and have been very active with their Team In Training (TNT) program. As a participant, I’ve completed many “century” bike rides (100 miles in a day), two half-marathons, several 10Ks and the Avon Foundation’s Avon 39 Walk in both Washington, DC, and New York City—all while fundraising and bringing awareness to blood cancer.
Almost four decades after being diagnosed, I’m alive, happy, remarried to a wonderful man and enjoying my life to the fullest. I’m happy to be retired and living in Denver with my husband and “fur baby.”