The doctors thought it was pregnancy symptoms. It was something much worse.
When Venelina Vateva found out she was pregnant with twins, she did what all new moms do. She imagined all the milestones she would celebrate with her kids: birthdays, graduations, first dates. She wanted to be there for every second of it. But then something terrible fell into her lap, the way terrible things do.
At just 28 years old, while pregnant, she was diagnosed with incurable cancer.
It started with nausea and tiredness—nothing unusual during pregnancy. She assumed it was typical first trimester stuff. Even when she developed a cough and persistent back pain, the doctors said it was probably pregnancy related.
“I thought, ‘Maybe this is just how it is when you’re pregnant with twins,’” she said. But despite carrying two babies, she was losing weight, and her back pain was becoming excruciating.
“I got up in the middle of the night one night, and I remember I was standing in the kitchen just crying because I was in so much pain. When I came back to bed, I couldn’t get into the bed. That’s when we decided to go to the hospital.”
Venelina and her wife, Lindsay, were rushed to the hospital in an ambulance. An x-ray showed one of her lungs clouded in pneumonia. She was admitted to UNC Hospital, where she stayed for a few weeks, receiving a steady stream of IV antibiotics.
When the pneumonia finally cleared, she was released from the hospital. But almost immediately, she ended up back in the emergency room. She was having difficulty breathing, and the shortness of breath was so severe that she physically couldn’t speak.
Lindsay jumped in to communicate with the doctors on Venelina’s behalf. And there were a lot of doctors—a pulmonologist, an infectious disease expert, a hematologist. No one knew what was wrong. They just knew she wasn’t getting better.
Dr. Tracy Manuck, an OBGYN, thought Venelina should be seen by oncology. She pushed for a biopsy, which Venelina had done just days before her 28th birthday.
The results showed Venelina had stage IV lung cancer.
“I don’t remember the exact moment when the doctors told me it was positive,” she said. “Lindsay found out before I did. I was still recovering from the surgery from the biopsy. Apparently the doctor came in and just looked at her, and she knew.”
Until that point, Venelina had been perfectly healthy. She was young, she’d never smoked, and she had no family history of cancer. It didn’t make sense. Cancer never does.
While Venelina and Lindsay were still adjusting to the news of her cancer, the doctors gave her a devastating prognosis. She had anywhere from a few months to two years to live.
“I just remember thinking, ‘But I’m pregnant. What do we do?’” she said.
Her pregnancy was at the center of every decision. Every scan, surgery, and treatment posed a risk to the babies. The doctors came up with a plan: They would start her on chemotherapy treatments right away. In one month, she would deliver the twins by C-section at 28 weeks. They would stay in the NICU for a while.
Venelina’s first chemo session was debilitating. The chemo was so toxic that anyone involved in her care had to wear a blue protective suit. A “biohazard” sign hung on her hospital room door. If the medicine ever leaked outside her IV, she was told, it would burn her skin.
She had two more treatments before being released from the hospital with instructions to return for more sessions. Most of that time feels like a blur to her. She remembers being very quiet, dissociated, in her own world. A world that was broken. A world where she would not live long enough to teach her kids to read or ride a bike.
But finally, some good news came. After genetic testing, Venelina found out she has a gene called ALK—essentially “a typo in the instruction manual” of the DNA, which causes cancer cells to grow. Medication can “turn off” the gene responsible for the cancer, slowing and even reversing the spread of the disease.
It’s not a silver bullet. But it will give Venelina more time.
“That was the greatest news to receive,” she said. “My cancer is not reparable at this point, but with this medicine, it’s manageable. There are people who live 10 years or more with that targeted therapy, and there are other people who aren’t that lucky. But I’ll get more time.”
With this new medicine in play, Venelina would not have to return for more chemotherapy. And she could continue her pregnancy until her body decided it was time to deliver the babies.
She ended up carrying the twins almost to full term. She was in labor when she walked into the hospital at 36 weeks and announced, to many of the same nurses who had cared for her during her last hospital stay, “Hey, I think I’m giving birth right now.”
Her son and daughter were born via C-section in July of this year. Violeta came first, then Ivailo.
It was a beautiful and terrifying moment.
“The medical trauma that I experienced happened at the same place, the same hospital. It was bringing it all back, all those memories,” she said. “So their birth, it was very, very happy, but at the same time it was very scary because of my diagnosis.”
Despite the pneumonia, the chemotherapy, the scans and surgeries and cancer meds, the twins were both born healthy and strong. Like all parents, Venelina and Lindsay looked at their new son and daughter with awe.
“I call 2021 the happiest, crappiest year of my life,” Venelina joked. “You have to have a little bit of humor.”
The pair are now home with their two-month-old twins, who are growing and developing well. So far, the medication has been a success. Scans show no new cancer growth, and the largest tumor in Venelina’s lung has shrunk.
She is thankful for Blue Cross and Blue Shield of North Carolina, her employer and health insurer, which pays for all but $5 of her $1,500-a-month lifesaving medication. Although her body will eventually build up a tolerance to the drug, the medicine is reducing her symptoms and allowing her to enjoy this time with her family.
“If you see me, no one could really tell, ‘She has cancer. She’s gone through all this,” she said.
Of course, she does have cancer, and it’s a reality she does not have the luxury to forget.
Looking back on it all, she remembers thinking cancer only happened to older people, that lung cancer only happened if you smoked.
“I thought of myself as being invulnerable, really,” she said. “I was so active and so healthy that I just felt like nothing could touch me. I became pregnant on the first try of IUI. I was like, ‘I’m fertile! I’m healthy. I’m strong.’ But this happened to me.”
She encourages other people, especially pregnant women, to be aware of their symptoms and to advocate for their care. She is grateful for Lindsay’s steadfast support and the care she received from UNC Hospital doctors and nurses. She even counts some of those nurses as friends now.
After a “happy, crappy year,” Venelina is enjoying every minute with her beautiful new family of four (seven, if you count the two dogs and the cat). As far as the future is concerned, Venelina looks forward to many big milestones ahead. She will continue to have scans every few months. She will continue to enjoy her new babies as they learn and grow every day. She will continue to experience the best and worst of life, all at once.