Solveig was 25 when her life changed completely. She had gone to the doctor in September 2020 thinking she had irritable bowel syndrome, something minor to adjust her life around. Instead, she heard a word she barely understood. Leukemia. To Solveig it sounded like a death sentence, but her doctor explained that wasn’t the case – that people lived with CML for decades on medication. None of that registered. After her doctor uttered the word leukemia, it was as though she had gone deaf.
I came out of the office thinking, ‘I’m going to die soon.’
It was the middle of the COVID pandemic, so she couldn’t tell her family in person. The calls that followed were some of the hardest conversations of her life. Everyone reacted differently. Her father threw himself into research and bone marrow donation registries, trying to find solutions. Her mother was devastated, and Solveig found herself trying to comfort her, even though she was the one who was sick. Her brother was angry and kept asking why it had to be her. Solveig felt numb as she tried to explain. She didn’t even fully understand everything herself.
Everything moved quickly after the initial diagnosis. Solveig had been a student, going to school every day, but suddenly she was in the hospital, undergoing tests and starting treatment. Because she was in blast phase, the most advanced and acute stage of CML, the situation was urgent.
I was in the hospital every day, going through tests, and I didn’t know if I was going to survive.
Five years on, Solveig is still on treatment – grateful it exists, but acutely aware of its limits. The fatigue is constant: she sleeps 12 hours most days, much more on days when she’s pushed herself. She lives with constant pain and limited access to pain relief. In addition, she struggles with concentration problems and memory loss.
I used to be very active and had many hobbies. Now I feel like I’ve lost a lot of that. Sometimes I feel like I’m not even half a person anymore.
For Solveig, life on TKIs comes at a price. She says it’s not a long-term solution – at least not for young people who can’t continue living the way they did before. She is still coming to terms with the cumulative toll. Even small things come with trade-offs: if she meets up with friends, that can be the only thing she manages to do that day.
Through it all, her boyfriend and his family have been there for her. In the hardest moments, she has felt like one of their own. Her advice to anyone newly diagnosed is simple: don’t go through it alone. When you’re sitting in the doctor’s office hearing everything for the first time, it’s easy for things to get lost or to feel hopelessly negative. Having someone with you makes a difference. She also encourages connecting with others living with CML – because even though the disease is considered manageable, what you’re going through is very real.
What keeps her going is knowing that people are still working toward something better, researchers and companies looking for answers that don’t yet exist. She can see a light at the end of the tunnel. She doesn’t believe every possibility has been explored yet.