Sophie shared her story in October of 2021.
Early 2016 was a happy, but busy time. I was working in childcare – I love children – and I could take my daughter, Stella, with me. I was also going to school to study early childhood development and to become a preschool teacher, and I had recently gotten engaged to my partner, Andrew. We were making plans for our wedding for June that year.
A week after our wedding I realized I couldn’t ignore the headaches I had been getting, which had been slowly getting worse for about a year. I blamed it on my family history of migraines and got ready to be diagnosed with that. Because it wasn’t presenting like a normal migraine, I ended up getting a CT scan. Then I had an MRI and was diagnosed with a brain tumor. I was devastated, but determined to have fun while I could still.
I scheduled my first brain surgery for the end of the summer. The day after my diagnosis, we went straight from the hospital to Wisconsin. My partner’s family has a lake house in the countryside and it is my favorite place on Earth. I went paddle boarding on the lake and for the first time in my life I realized that all of the beauty in the world was also for me. I hadn’t realized that until I was diagnosed. The world is so beautiful and miraculous and abundant. It was a deeply profound moment that made me appreciate the world and my life on a level I didn’t know existed.
In August, I had exploratory surgery that lasted seven hours and had an incredibly hard recovery period. The surgery showed that I had an oligodendroglioma, a primary central nervous system tumor. The tumor was about the size of a golf ball, and the only issues it was causing me at this point was severe headaches. It was so hard to wait for the pathology report from the surgery. I knew that gliomas that have a grade 3 or higher have a prognosis of less than a year to live. I was so scared.
When the results came, they showed that the tumor had a grade 2, which meant it was precancerous, and that was such a relief. But my doctors told me that the nature of this disease is that the tumor is diffused and hiding and impossible to get all out, that those cells tend to grow and over time mutate into an aggressive form of brain cancer. I was in really rough shape for a while. I was very weak on my whole right side because of the surgery but tried some dangerous diets thinking that would keep my tumor from growing back. Thankfully I snapped out of it and started eating regularly again, gained strength and put some weight on, worked hard and got stronger.
I so wanted – and want – to live. I love moving my body: I dance, do yoga, I am obsessed with my stationary bike, I love to hike, I love paddle boarding, I love riding horses. I love to be out in nature with my dog and forage and take photographs. I love gardening and growing medicinal plants. I love making art and being creative in the kitchen. I love being and playing with my family.
After my first surgery in late August 2016, I had a couple of grand mal seizures. In 2020 I had another seizure, and an MRI showed that the tumor was growing back. I had to have surgery again, which I did in early September 2021 – at the age of 34. During this surgery I was awake so that I could speak and move. We worked as a team. I was made to speak and move because my tumor is so close to the part of my brain that controls speech and movement and there was a higher risk of permanent damage if I wasn’t able to relay information during the surgery. To be honest it was incredibly hard, but they did an excellent job. I am recovering a lot faster this time.
If the tumor does upgrade from grade 2, I could possibly have a lot more seizures. I live in fear of seizures – that they will increase. If the tumor grows back a lot of really unpleasant things could happen. I fear not having control. If my tumor becomes more aggressive, which it is almost certain to, I want the option of medical aid in dying in my home state of Illinois.
Talking about and advocating for medical aid in dying means advocating for something that could give me control. I know people are working on educating people about medical aid in dying in Illinois, and I have spoken with my state senator about the importance of authorizing it here. I want to have this as an option for myself – if I ever need it – and for others.
I don’t want to die and I don’t want anyone to misconstrue my advocacy as my wanting to die. I very much want to live. I love my life, I love my daughter, I love my husband, and I don’t want to leave them. I want to keep trying as long as there’s hope. But I want to avoid being trapped in my body, in pain as it’s breaking down, knowing that I’m dying, for who knows how long. I desperately want to avoid unnecessary and prolonged suffering.
Having an incurable brain tumor means needing to be thoughtful about the likely reality of facing the end of my life earlier than I would like to accept. I would prefer to have the right to decide for myself whether or not medical aid in dying makes sense, rather than have strangers keep the option unavailable to terminally ill Illinoisans. I would prefer to organize things, and maybe organizing my own last chapter would bring me some peace. It could be beautiful. I like to live with intention and I would like to die with intention – with care and thought. Possibly have a farewell party with people I really love and love me back singing me out.