“I’m 67 now and, with every year, I’m thrilled.
I love getting older.”
Most everyone can remember what was going on in their lives when they learned about a serious diagnosis. Maria Ragucci had graduated from Harvard Law School and was in her second year working at a top Manhattan law firm. “It was unbelievably stressful–24/7–and a difficult work environment,” she recalls.
It was during a regular medical appointment when Maria, age 27, heard the nurse practitioner say: what’s this swelling? “After she pointed it out, I looked in the mirror and saw that half my neck was distended. How could I have missed this?” X-rays revealed a mass in Maria’s chest, which led to a biopsy. “I was at work when the doctor called me and said: ‘You have Hodgkin lymphoma.’
“I didn’t know anything about Hodgkin’s, but I realized I needed to figure out what to do. I called one of the partners at the law firm and said, ‘I’ve got to go.’” It was 1983, and Maria soon understood that she would be faced with decisions. She wanted to have children, but MOPP–mechlorethamine, oncovin, procarbazine, prednisone–chemotherapy could have an impact on fertility. At the time, freezing one’s eggs was not an option. “Also, the tumor was wrapped around my heart,” she notes.
Maria started out at Beth Israel Medical Center in New York but also saw specialists at Massachusetts General Hospital in Boston and Sloan-Kettering Medical Center in New York. “Then a friend of mine, a doctor at Yale-New Haven Medical Center, suggested I see someone there,” she says. “The plan was to shrink the tumor with radiation, perform a splenectomy and then continue with radiation. They felt I had a 50 percent chance the treatment would work.
“What were my options? I didn’t want to have the chemo; this treatment would give me a chance to preserve my fertility. I gritted my teeth and just did it.”
Maria got through the treatment, went back to work, and, in 1996–about 11 years later–gave birth to her son, Thomas.
“The Uncertainty Is the Worst Part”
Her health was fine for a number of years. “But as I went back for all my check-ups, I began thinking about how I’d had all this radiation, and I knew radiation was bad. At one point, I asked my doctor what my life expectancy was likely to be, and he essentially answered, ‘The same as everybody else.’ Really?”
Maria decided to see a new oncologist at Sloan-Kettering and, for the first time, felt that someone was really going to manage her care. “Dr. Carol Portlock and her associate had read every page of my medical record, and they told me exactly how they were going to care for me. I remember sinking back into the chair and breathing a sigh of relief because I had been worrying. The uncertainty is the worst part.
“I was aware that breast cancer was a risk,” Maria says. “I was 50 when an MRI revealed a tiny spot. I couldn’t have more radiation, so I had a mastectomy, which was devastating at the time. But several months later, I decided to have a prophylactic mastectomy; I had my other breast removed. That was followed by a quick recovery emotionally. I didn’t want to face more testing and more anxiety.” Nor did Maria want more surgery. “I decided I didn’t want any reconstruction. I said: enough.”
It was many years before she met anyone else with Hodgkin lymphoma. “After a while, I decided to attend a support group,” she explains. “Sloan-Kettering had a women’s-only Hodgkin’s survivor group.” Someone in the group led her to Hodgkin’s International, which has come to mean a lot to her.
“It’s a dedicated resource that can direct you to the right care,” Maria says. “Hodgkin’s is fairly rare, and many patients discover that their doctor doesn’t have any experience managing the late effects. Once you find Hodgkin’s International, you realize you’re not doing this alone.”
These days, Maria lives in Rye, New York, with her husband and is facing the late effects of radiation fibrosis that has damaged her heart valves and caused severe deterioration of her upper-body muscles and nerves. “I have a lot of fatigue. I can’t lift things and can only walk short distances. Every day, I try to outsmart my fatigue.” She has gathered articles from the Hodgkin’s International website for when she may need a valve replacement.
Maria made a generous gift to Hodgkin’s International to show her appreciation and support for its mission: to be a place that is distinctly different from one’s hospital or physician’s practice–that is, a community of individuals who seek useful information, friendship, and understanding.
“Mostly, I wanted to support Erin Cummings, who established Hodgkin’s International,” Maria notes, “because I find her incredibly inspiring. Erin is dedicating herself to helping every one of us with Hodgkin’s by finding the best information and making it available. That’s very reassuring. I think a lot about where I direct my charitable giving. I tend to give to organizations that have a personal impact on people that I can see.”
As she reflects on her life, Maria knows that, compared to many individuals, she is lucky. “I’m 67 now and, with every year, I’m thrilled. I love getting older.”