Following a milestone birthday celebration, a mother’s visit to a gynecologist leads to the discovery of a mysterious illness baffling the medical community
“I don’t accept death,” says Jill Litton, with genuine seriousness behind her soft laughter and calm voice. “My family needs me, and I have to keep living my best so I can take care of them.”
“Just because you have cancer and your doctor says you have a year to live doesn’t mean you must suddenly agree to those terms and begin preparing to die.”
Since her mesothelioma diagnosis in 2009, the West Virginia native has noticed a recurring theme throughout her health care journey: confusion.
After blowing out her candles on her 50th birthday, Jill noticed an unexpected occurrence of a relentless menstrual cycle that lasted several weeks rather than a few days.
Confiding in a handful of coworkers, the mother of two was assured that she was experiencing “the change” — a popular euphemism referring to a woman’s transition from her reproductive years into menopause.
During a gynecological exam the following month, Jill was told she was hemorrhaging and required immediate hospitalized care. Three exploratory incisions showed an unidentified grayish-white substance covering her reproductive organs, confirmed by a biopsy to be mesothelial cancer cells.
The following days were hazy with questions and tests, resulting in a hysterectomy. The question of how a woman’s reproductive organs could be exposed to asbestos — the single known cause of mesothelioma — confused all of Jill’s doctors, nurses, and lab technicians.
“I didn’t even know what mesothelioma was. I had never heard the word before,” Jill admits. Although her family’s medical history includes bone, kidney, lung, and pancreatic cancer, mesothelioma was unfamiliar territory.
“The medical staff didn’t know how to handle it, either. They kept saying that my test results were so unusual that they must be wrong. . .This was impossible.”
“No one believed me,” she recalls. “Even when new tests confirmed that I have peritoneal mesothelioma, doctors were again confused.”
Jill’s diagnosis, particularly its first presentation on her reproductive organs, continues to bewilder her doctors and care team. They remind her how unusual it has been to witness.
She was also surprised by how many doctors were unfamiliar with cytoreductive surgery with hyperthermic intraperitoneal chemotherapy (HIPEC), which she has successfully undergone.
“Unless you see a mesothelioma specialist, most doctors have a noticeably limited education about this cancer.”
For years, it seemed like everyone who heard about her diagnosis was confused — except for Jill. Her unwavering faith in God’s plan for her life kept her grounded in what she knew to be certain: that she would somehow manage to survive this ordeal.
“Most doctors tell you that you only have a year to live. But from the moment I heard those words at the hospital, I completely trusted God with my whole heart,” says Jill. “He has continually blessed me, and I am still here more than a decade later.”
Patients with peritoneal mesothelioma who undergo cytoreductive surgery with HIPEC have an average life expectancy of 53 months. Having lived for much longer than this nearly four-and-a-half-year estimate, Jill credits her survival to her strong faith.
Recalling the various mesothelioma treatment options she has pursued, Jill reveals that the only time she questions her faith is during her chemotherapy appointments, which are spaced three weeks apart.
For a week following chemotherapy, Jill experiences such intense nausea that she must stay at the hospital for several days to receive 24/7 medical care. By the second week, she finally feels strong enough to continue recovering at home.
When she is finally feeling healthy and strong again in the third week, she returns for another round of treatment.
“Chemotherapy takes such an extreme toll on my body that even my doctor told me he has never seen anyone react this badly to it,” she shares.
“Each time I go through chemotherapy, I ask God why it has to be this hard on me. But then I realize that I would rather vomit for several weeks in exchange for remaining alive for another several years.”
Another area of emotional, social, and spiritual struggle is the agony of survivor’s guilt. Simply put, Jill feels guilty about being alive while watching other mothers die from mesothelioma.
“I have lost people who should have outlived me, and I went to their funerals,” she says. “Sometimes I cry and wonder why another mom died when she had a young daughter or son to raise.”
“As much as I am thankful that I am still alive, I also struggle with extreme guilt because not everyone is this lucky.”
Through a combination of consulting with medical staff and diving into her own research, Jill has devised multiple theories about how she developed mesothelioma in the first place.
Perhaps the biggest piece of this puzzle is her late father, who served in the United States Navy for seven years. During his service, young Jill and her family lived on Navy-owned property.
Although it’s unconfirmed, Jill suspects her father’s daily exposure to asbestos dust — large amounts of which were often found on his clothes — may offer an explanation.
She mentions that, as a child, she sucked her thumb and played on the same floor where asbestos dust from her father’s work clothes landed each night. She may have ingested asbestos for years without knowing.
Unfortunately, Jill’s diagnosis was deeply heartbreaking for her mother, who blamed herself for the potential negligence that led to her daughter’s illness. Jill, however, doesn’t hold any of her family members responsible for her diagnosis.
“My mother was overcome with such heavy guilt,” Jill confesses. “But I always reminded her that it was silly to feel guilty because I could have been exposed to asbestos anywhere. Maybe it was from my school or a construction zone or at a hospital. No one can say for sure, so she should not feel guilty.”
Since asbestos is durable and affordable — and because manufacturers of asbestos-containing products hid the health dangers of the mineral for decades — it was frequently used in materials for constructing military bases and buildings, including in the U.S. Navy.
However, these same qualities put millions of innocent people at risk of developing mesothelioma.
Despite what may have happened in her life that led to this diagnosis, Jill doesn’t hold any feelings of resentment or anger.
“I don’t feel bad about having mesothelioma. I have never felt sorry for myself. Worse things have happened to other people. This is something that I will never totally understand, and that’s okay.”
To Grandmother’s House We Go
After a series of traumatic events drastically altered the course of her older son’s life, Jill stepped in to help raise his two children.
For the past four years, her now 13- and 10-year-old granddaughters, both of whom are fully aware of her medical condition, have been homeschooled under her supervision.
“Although their story is sad, and I have cried a million tears over it, it’s also a gift from God that I get to nurture them. I don’t know how their story will end, but I know it will be great,” Jill reveals.
“They have watched me suffer tremendously, and they are so kind, loving, and helpful to me. I can’t wait to see what good things are in store for them.”
When her granddaughters were babies and were much more dependent on around-the-clock care, Jill was initially worried that the weakness and pain she experienced from her chemotherapy sessions would prevent her from taking proper care of them.
However, she soon discovered that caring for these girls has given her exactly the motivation and strength she needs to get out of bed every morning and continue living her life as normally as possible.
Now, after years of simultaneously managing her cancer care and serving her family, Jill believes that raising her granddaughters is a huge part of her will to survive.
“These children have given me the courage and determination to continue fighting,” she affirms. “My life is absolutely wonderful. What more could I ask for?”