“I keep my mother alive by making a gift in her memory to an organization that is providing resources, support, information and friendship to people around the world who share this common experience.”
“After my mother was diagnosed with Hodgkin lymphoma in 1968, she had a significant concern about recurrence,” says Rachel, a Unitarian Universalist chaplain and minister in the San Francisco Bay area. “It became a pretty constant, low-grade hum in the background.
“Back then, cancer wasn’t discussed in a very forthright way, so my mother didn’t talk about it. I was 18 years old before I knew what kind of cancer she had. I knew my mother had a scar on her chest, so I made the assumption that she had breast cancer, which can have a genetic component, unlike Hodgkin’s.”
Back then, late effects were neither understood nor described to patients. Diana Anderson was a reference librarian with a master’s degree from Simmons College. Her daughter, Rachel, was 15 months old when she was diagnosed.
“Our family lived in New Hampshire, so my mother had her tumor removed at a New Hampshire hospital but chose Mass General Hospital in Boston for radiation,” Rachel explains. “My parents waited before having more children because if you survived five years, your odds went up. At least, that’s my take on it.” Her two sisters are five and seven years younger than her.
“A Person Who Just Makes Tumors”
In the years after receiving radiation to the chest, Diana developed a tumor on her thyroid, then lymphoma cells in her stomach, and, finally, lung cancer. “The thyroid tumor–a Hurthle cell tumor–was benign, but my mother had the complication of a lung embolism during the surgery,” Rachel explains. “After, the surgeon said he could see tissue damage from the radiation. She came through that, but a couple of years later she developed stomach problems and was diagnosed with an ulcer before she was finally found to have a MALT [mucosa-associated lymphoid tissue] lymphoma.”
Diana had no context in which to understand the tumors she developed in the years after receiving radiation to the chest. “I remember my mother saying ‘Maybe I’m just a person who makes tumors,’” Rachel recalls. “Early on, no one was telling her the reason was that she had received an extraordinary amount of radiation in that general area.
“Similarly, my mother thought she was out of shape and criticized herself for not being more aerobically fit. Finally, when she was in her mid-50s, one of her doctors said, ‘Well, you were irradiated, so your lungs don’t work at 100 percent.’”
When Diana was diagnosed with Stage 4 lung cancer in 2002, her oncologist told Rachel’s father that it was probably caused by the radiation 35 years earlier. She died a month later, at age 64. “He assumed that her final illness was a result of the cure–a cure for which I am deeply grateful.”
Her awareness of the role that late effects had on her mother’s health prompted Rachel to begin doing research. “I wanted to find other adults who are children of Hodgkin’s survivors from the 60s and 70s because I’m curious about how those now middle-aged people understand the ways their parents’ diagnosis and survival shaped their life.” That research brought her to the Hodgkin’s International Facebook page and then the website.
“One of the things I appreciate about Hodgkin’s International is that, by sharing information with people about late effects, those people will know how their bodies were profoundly changed by treatment. I wish my mother had known that.”
Rachel knows that she had her mother for 35 years. “That’s significant, and I’m profoundly grateful,” she says, adding that, if her mother had been diagnosed several years earlier, she might not have received treatment that allowed her to raise her family.
In her ministry, Rachel says she works at “the intersections where life and death meet. Growing up, one of the few places where you could wrestle with issues of life and death and what it means to be human–to know that we are alive and are going to die–was in a religious context.
“Now I offer spiritual care and accompaniment to individuals considering their mortality. Since covid, I consult on memorial rituals, often coaching people as they hold their own rituals. I tell them: it’s never too late.”
Rachel says her gift to Hodgkin’s International accomplished a number of things. “I keep my mother alive by making a gift in her memory to an organization that is providing resources, support, information, and friendship to people around the world who share this common experience. In supporting the work they do, I’m helping them provide the information people need.
“I feel great about it,” she says. “My mother was a reference librarian; she provided people with information. It was a meaningful gift for me to make. Like all good gifts, the person who makes the gift receives something wonderful in the process.”