Pregnant, diagnosed metastatic, choosing to move forward: Jonise Louis
Soon after learning she had breast cancer, Jonise Louis was getting ready for her first appointment with a surgical oncologist. Suddenly, she had a startling thought. “Hold on,” she remembers thinking, “I haven’t seen my period this month.”
An at-home pregnancy test showed she was pregnant. Jonise was 35 years old and living near Fort Lauderdale, Florida, with her husband and one-year-old son. She worked as a budget manager and had recently been promoted.
No one close to Jonise had been through a breast cancer experience, so she didn’t know what to expect. “I was just walking into this unknown territory. And I think me being pregnant made it three times worse,” she says.
To protect the fetus during treatment, she would have to delay chemotherapy until after her first trimester of pregnancy, limit scans due to radiation risks, and have only local anesthesia for procedures such as biopsies and port placement.
“When I decided that we were gonna keep this child, I looked at it as bittersweet,” she says. “It was like, okay, I’m gonna get through this cancer diagnosis, but the light at the end of the tunnel is for me to do well, so that my child is born healthy.”
“I never questioned the pregnancy,” she explains. “It was more fear for myself: How long would I be here for my unborn child and for my child who is already here? I'll bring the child into the world, but then how long? That fear replays in my head constantly, even today.”
Finding emotional strength
Jonise handles her feelings and concerns in several ways. To reduce stress, she maintains a tight personal circle of people she trusts. Not everyone understands what she’s experiencing, she explains, and people often offer unsolicited advice.
Her husband, family, and close friends are supportive. That’s good, but she tries to avoid overburdening them. “It takes an emotional toll on them, too,” she says. “My thing was always if I can get myself in a right mental space, then that will keep me well, keep me more upbeat, and help them.” She also relies on her faith.
Jonise had a few sessions with a clinical mental health therapist but found it hard to relate to the advice she was given. “Everything the therapist tells you to do—she can suggest this and this, but I still have a terminal illness,” Jonise says. She finds hope and inspiration from talking with people who have been living with metastatic breast cancer longer than she has.
Early in her pregnancy, she found support through Hope for Two, a network for pregnant women with cancer. The organization matched her with a support buddy who also had breast cancer and was pregnant. Their due dates were just two months apart, and the women texted daily. “We journeyed together,” says Jonise, calling the experience “a major piece” of her support system during that time. “It really helped knowing someone who was going through the exact same situation as me.”
Jonise has taken on the outlook that she is choosing to live with cancer and celebrate the small victories she achieves. Those victories include following her oncologist’s belief that, due to her young age, she could have a bilateral mastectomy if she wanted it. She had surgery with implant reconstruction in 2022 and DIEP flap reconstruction in 2023.
She is still on her initial treatment of Verzenio [abemaciclib], Arimidex [anastrozole], and Zoladex [goserelin]. Jonise goes for scans every three months and does worry beforehand about what the test might show. For more than a year, she has had no evidence of disease (NED). She and her husband find a way to celebrate each time.
Search for care
Because she was in active treatment for metastatic breast cancer during her pregnancy, Jonise struggled to find obstetric care. Her first child had been born in a birth center with a midwife. She had hoped a second child could be born at home. This time, however, she needed both an obstetrician and a perinatologist, a specialized obstetrician with training in high-risk pregnancies. Labor and birth would happen in a hospital.
She went to several obstetricians who reviewed her chart or records and then refused to take her on as a patient, saying she was too high-risk. One doctor accepted her for a few visits, then dismissed her, saying simply, “I can no longer see you.”
“It was very challenging and very emotional,” Jonise says. Finally, after a lot of negotiation and compromise between doctors, the perinatologist who agreed to see her suggested an obstetrician and the two doctors worked out a care plan. The pregnancy and birth went smoothly. The couple’s healthy second son was born in May 2021.
Jonise is now on permanent work disability. “The boys (ages 2 and 4) keep me busy,” she says. “I like to live in the moment, to spend time with them. My days go by really quickly, just loving on them.”
Her experiences motivated Jonise to follow an interest in community breast cancer education. Through her oncologist, she has provided support to several young women. She also has spoken at public events and shared her story on social media. When she learned about LBBC’s Young Advocate training program, she eagerly applied and attended the 2023 session.
She wants to focus her advocacy efforts on African American and Haitian communities. “My background is Haitian,” says Jonise. “In the Haitian community, any type of cancer is not talked about, even in families.” That makes it difficult for people to learn about their family medical history. “When a person passes away, it's just, ‘She had this issue.’ It's never, ‘She was diagnosed with breast cancer.’”
Jonise has seen that pattern in her own family. Months after her diagnosis, she discovered that a cousin had had a preventative bilateral mastectomy due to recurring breast cysts (a condition Jonise also had). Another relative died of breast cancer but no one shared that news.
“I want to be able to reach out to the Haitian communities, empowering and informing so that it’s not this secret that no one wants to talk about,” she says.
She understands that messages about breast health, family cancer genetics, breast cancer treatments, and more are best delivered by “someone just like you, from your community, who can communicate in your language so there’s no barrier” to getting information.
“If you keep it a secret, it does your family no good,” she says. “I feel like so many lives can be saved when you share that.” She’s excited to help make that happen.
The views and opinions of our bloggers represent the views and opinions of the bloggers alone and not those of Living Beyond Breast Cancer. Also understand that Living Beyond Breast Cancer does not medically review any information or content contained on, or distributed through, its blog and therefore does not endorse the accuracy or reliability of any such information or content. Through our blog, we merely seek to give individuals creative freedom to tell their stories. It is not a substitute for professional counseling or medical advice.
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