On Aug. 12, five weeks after giving birth to her second daughter via Cesarean section, April Lopossa had a 9-centimeter cancerous tumor removed from her intestine. Since then, she has used her diagnosis as a catalyst to help others and, she hopes, to cause change.
In March, while six months pregnant, Lopossa was diagnosed with a gastrointestinal stromal tumor, or GIST, a rare cancer that is generally found in the stomach and small intestine. The majority of people diagnosed with GIST are men over 50. Lopossa was 31. She believes the cancer was caused by contaminated well water from a Superfund site in her home town of Martinsville.
“It’s a good thing I got it out when I did. The doctor said it was barely holding on and could have ruptured,” she said.
Lopossa has begun taking a chemotherapy pill, which she will need for the rest of her life. She has had some side effects, including nausea, water retention and muscle cramps so painful she sometimes can barely hold her baby.
She said it’s been rough, but she tries not to complain. She has been getting help from her mother and sister, who watch her daughters when she goes to doctors’ appointments. Due to COVID-19 restrictions, no one is allowed to go with her.
Her mother, Brenda Ranard, said she was shocked when she first heard about Lopossa’s diagnosis because she had always been in good health. Since then, she has tried to educate herself on her daughter’s cancer and be there when she needs her.
“She knows I’m only a phone call away. I never want her to worry about her babies,” said Ranard.
So far, all Lopossa’s tests have been clear. On average, she has a doctor’s appointment every six weeks and will have a CT scan and MRI every three months for a while. If those continue to go well, she’ll have them every six months, for the rest of her life.
Cancer in the community
In October, Lopossa received a text from Hoosier Action asking if she knew about the water issues in Martinsville.
“I sent a text back and said actually, I’m one of the people who have probably been affected by the water. Then it just started it from there,” she said.
Hoosier Action is a non-partisan, member-led organization. Each chapter works on local issues agreed upon by the members in that community.
Tasha Coppinger, organizing director for Hoosier Action, said in the last two years, the group has worked on cleanup of environmental contamination, affordable housing, access to healthcare, combating the overdose crisis and workers’ rights.
One issue the Martinsville chapter decided to work on was awareness of the Pike and Mulberry Street Superfund site and cleanup of the contamination.
Lopossa has become active in Hoosier Action, speaking to others about her cancer diagnosis. City officials and the Environmental Protective Agency have stated previously that Martinsville’s water is safe to drink, and tests have shown the water to no longer be contaminated. But Lopossa and others think citizens’ health remains at risk.
Seven Martinsville residents, including Lopossa, have been diagnosed with GIST, which makes up less than 1% of gastrointestinal tumors. Others have different cancers that they suspect may be connected to the water.
Through her work with Hoosier Action, Lopossa has been able to meet other people with cancer or those who have a family member with cancer in Martinsville. She said hearing other people’s stories has been sad, but at the same time it makes her feel less alone.
“It’s like a double-edged sword. It's hard for everybody involved, but definitely you don't want to feel alone, and knowing that there are other people in town, that really makes you not feel so alone,” she said.
Lopossa said her work with Hoosier Action has helped her to learn about state and local issues she says she wouldn’t have known about without the group. And using her story to try to help other people has helped her during her recovery.
She has even met with U.S. Rep. Peggy Mayfield, R-Ind., about the cleanup efforts in Martinsville and about possible family leave legislation. When Lopossa had the surgery to remove her tumor, her husband, Tyler, was able to take only two days off work, which was all he had left after her previous surgeries and the birth of their second daughter. His company didn’t offer any other benefits, and with Lopossa unable to work and mounting medical bills, he couldn’t afford to take unpaid time off.
According to Lopossa, Mayfield said her focus would be working on the cleanup of the Superfund site and any other possible water issues in Martinsville.
“The fact that she's turning bills down to focus on the water and knowing that such it’s such major issue, I really, really appreciate that she's taking it so seriously,” Lopossa said.
Support and advocacy
On days when Lopossa is struggling, she reaches out either to Life Raft, a national nonprofit organization that provides support, education and research for patients with GIST cancer, or
to a Facebook group for young adults with cancer.
“You don’t want to be a burden to the people around you, so I’d rather complain to people who know what I’m talking about, because to them I’m not complaining,” she said. “It’s just a normal day.”
Diana Nieves, Life Raft senior director of outreach and engagement, said the organization is a community of people with GIST and their supporters who are passionate about offering hope and companionship to those with the disease.
“The community offers so much support to each other about their own GIST journeys, including side effect management, and offers emotional support on everyday life with having GIST,” said Nieves.
The support groups run in eight-week cycles. Lopossa has finished her first group and has started another. She says these groups have helped her a lot, and she has enjoyed speaking with people all over the country.
“Some of the stories I've heard, the things that they're going through, makes me feel like my problems are nothing,” she said. “People are going through so many different things, and especially right now in the middle of a pandemic.”
Life Raft also calls and checks on her to see how she is doing and to keep track of its national registry.
Nieves said the goal of Life Raft is to find a cure. It has created a GIST patient registry to capture specific data elements of the disease that will influence the overall survival of patients. This information is used to understand the history of GIST, treatment outcomes and to help accelerate research through patient-based data.
Lopossa has been able to combine both the Life Raft group and her work with Hoosier Action. During one of her phone calls with the Lift Raft data analyst, Lopossa mentioned there were seven cases of GIST in Martinsville. The analyst is investigating the cluster and helped Lopossa set up a meeting between Life Raft and Hoosier Action.
Lopossa has also gotten more involved in community advocacy, which has helped her to fill a void since she hasn’t been able to work.
“It gives me like a sense of purpose, I would say. I was hoping I would be able to share my story and help other people, and I am getting to accomplish that a lot quicker than I thought I would,” she said.
Her activism has also inspired her mother to become involved in issues surrounding the Superfund site and the city’s water supply.
In an effort to help Lopossa with medical bills, Ranard has started a GoFundMe for her daughter.
“April has worked since she was 16 years old,” Ranard said. “When she was diagnosed, she knew she wouldn’t be able to return to work. She had three surgeries and a biopsy this year. The medical bills are piling up.”
Family comes first
Even while dealing with her cancer treatment and its side effects, Lopossa is still busy raising her two daughters Athena, 2, and Amelia, 5 months.
Athena seems to enjoy her role as big sister, helping Lopossa by bringing her diapers when she needs them and helping hold Amelia’s bottle.
“Athena loves her. That’s her bobby. She doesn't say baby, she says bobby,” she said.
Amelia loves to be held and is popular with the other children on the block.
“I can sit outside and hold Amelia while Athena gets to play with the other little girls on our street. When I come out with Athena, they get so excited. They absolutely love her, and then they fight over the baby too,” she said.
Lopossa said she’s lucky the cancer was found and that treatment options are available for her, even if they come with some nasty side effects. She is looking forward to being a mentor in the future for someone who has been diagnosed with GIST, just as a Life Raft support group member has mentored her.
“There's a lot to learn about this cancer since it's so uncommon,” she said. “Definitely, I just want to be able to help other people.”