In April 2018 I was diagnosed with stage 3 rhabdomyosarcoma, a rare and aggressive type of cancer that forms in soft tissue, as a 22 year old living by myself overseas in Helsinki, Finland.
I had moved to Finland just three years prior for music school. Trombone had been my passion since adolescence and I had romanticized the idea of moving to Europe. Inspired by the fact that my trombone teacher in Minnesota is a Finnish man, I became weirdly obsessed with Finland. Back then, music college was free to attend if you passed the audition. There was nothing to lose so I tried out.
The year before being diagnosed with cancer was an extremely special and fulfilling year. I had been doing a lot of out-of-town orchestral work, rather than focusing on school. I got to stay at fancy hotels for free while on the road with orchestras and even got to solo with the Finnish Radio Symphony Orchestra. It was a crazy experience performing in front of a full audience and orchestra. In retrospect, I feel really happy that I focused on living rather than on my school during that time. Those experiences were amazing.
I really loved my life before my cancer diagnosis. I don’t not love my life now, but it takes work. Before, I was stupidly in love with life. I was doing really well with music, I was a marathon runner, and I was focused on getting the most out of life. I’ve always had a pretty good life and have been unafraid of doing the things I want to do. I’m grateful for that trait.
Positivity and manifesting the life you want was my vibe at the time so I bought a “Happiness Planner” while I was on an out-of-town gig. I wrote that I wanted to win an orchestra position in Finland. I wanted to be fit and healthy. I wanted to run a lot. I miss running. I can’t now because of the issue with my lung. I wrote that I maybe wanted a boyfriend, but I definitely wanted a greyhound. I’m still working on the goal of adopting that greyhound.
At the end of 2018, I started struggling with breathing through my right nostril and had issues with my right ear clogging up. As a musician, it was troublesome as it affected my hearing. The issue lasted for months as I went to multiple doctors to figure out what was wrong. The overall consensus was that I was suffering from a chronic sinus infection. Doctors kept prescribing antibiotics, but nothing improved. I knew there was some else going on.
Finally, I was seen by a highly respected ear, nose and throat doctor. He was more thorough in his examination. He ordered an MRI and other tests, then mentioned that it could be polyps. I was referred to a surgeon to remove the mass in my sinus cavity. The surgeon broke the news–the mass was a malignant tumor. I was in total shock, unprepared for the news and alone.
What followed was a year of intravenous chemo and facial radiation treatments. I suffered numerous infections, landing me in the ER multiple times. Fortunately, my mother joined me in Finland. Her support and presence was helpful and important during that year.
I stopped playing the trombone for five months as I underwent treatment. Playing was never the same after that. Cancer robbed me of the motivation to pursue the thing that I loved most and what took me from Minnesota to Finland.
After a year of chemo and radiation, my scans looked clean, but a biopsy in May of 2019 revealed that the cancer was still present. I wanted to go home to Minnesota and desperately needed a break so I switched to oral chemo for the summer. This allowed me to come home, travel a bit, and enjoy my summer.
When I returned to Finland in August, I had surgery on my face to remove cancerous cells. Though cancer cells remained after surgery, doctors advised monitoring rather than jumping to the next medical intervention. Luckily, things were stable for a few months. In April 2020, however, a 3-centimeter tumor was identified in my parotid gland along with some cancerous lymph nodes in my neck. I had a neck dissection and major surgery to remove the gland in May of 2020.
I did a short bout of radiation following the surgery. The surgery and radiation felt worth it with doctors telling me that I should be good for a while. Sadly, that hope didn’t last long. Three weeks after I completed radiation, I was struggling to breathe. Emergency scans showed that tumors had spread to my pleural cavity and that my right lung was full of fluid. That’s when the word “terminal” was introduced into the conversation.
I made the difficult decision to return home to Minnesota to be with my family. My home in Finland was the only thing I felt like cancer hadn’t robbed from me. When I lost that, I felt like I lost everything. It was painful, but a necessary step for my medical care and support system. I started chemo about a week later in September 2020.
The chemo I received here yielded remarkable results and I was NED (no evidence of disease) for the first time since my diagnosis. Six weeks later, tests done during an ICU stay showed that my right lung cavity was filled with innumerable tumors and the fluid began to fill my right lung again. “Innumerable tumors” is one of the scariest descriptions doctors have used to explain the state of my cancer.
The average life expectancy from identification of malignant pleural effusion (MPE), build up of fluid and cancer cells that collects between the chest wall and the lung, is four to 12 months. September of 2020 is when I was first diagnosed with MPE. I’m a little more assured that I can live longer because it’s only in one lung, but I have yet to ask my doctor. My parents join me at every visit and it is hard to navigate what questions to ask in front of them. I don’t want them to be scared.
For the first few months of 2021, the pain was exhausting but tolerable. I was still working, dating, partying and living so it was strange to think about how serious my cancer is. But at the end of May 2021, six weeks from hell started, fluid was accumulating more quickly and I was having to get my lung drained more often. They couldn’t get my oxygen saturation high enough after a lung draining procedure and I had to be admitted to the hospital. I was sent home with oxygen, but was able to come off of it after 3-4 weeks.
The tumors have caused considerable pain. I’m on heavy pain meds and it makes me mentally foggy and super sleepy. For now, I can’t live my life without cancer in the forefront. I can’t even have one cocktail when out with friends, because of the opioids. I’m hoping to wean off of them, but I don’t know the amount of pain I will be in if I’m off of them. I don’t want to be on them if I don’t have to be on them.
I also found out the oral chemo I was on wasn’t working at all. I asked if there were any easy chemo options that wouldn’t make me lose my hair and that would allow me to have a somewhat normal life. I was hoping I wouldn’t have to get IV chemo again, but it was the option most likely to be effective so I started–once a week for three weeks, then one break week. This is the second time I’m neutropenic, abnormally low white blood cell counts, so I have to take a break from chemo. But it does seem to be working. I’m needing fewer drainings, and every time we drain there is less fluid.
The hardest part about living with cancer is the ebbs and flows. It is almost traumatic to have one foot in the grave for a month, then suddenly be doing better the next. I’ve been experiencing these waves since my diagnosis, but it has been especially turbulent this past year. It is hard to try to live my life around it and temporarily rebuild some normalcy every time things begin to get better.
All the treatments I’ve tolerated have led to so much pain, discomfort, infections, and emergency visits to the hospital. I’m stubborn and I know what I want, and I know it’s not to do more at the cost of my quality of life.
It can be a challenge to explain to well-meaning loved ones encouraging me to do more that there is a limit to the medical interventions I’m willing to endure. People will hear of someone with stage 4 cancer doing well on a trial and recommend I enroll in clinical trials. People don’t understand that I have a different cancer from most people. One cancer patient is not the same as another. I’m a different person. The place my cancer has metastasized may be different. With rhabdomyosarcoma there isn’t much research and trials going on either.
As my cancer has progressed and I have had to accept the inevitability of decline, the option of medical aid in dying has become important to me. It’s not that I strongly believe I would take the medication, but the option itself is what is important to me. Cancer has repeatedly robbed me of my own power and control. Having the autonomy to obtain an aid-in-dying prescription would provide me a much needed sense of control and peace of mind.
It’s appalling that not everyone has the option when it comes to something that is certain for everyone. Terminally ill Minnesotans should not need to leave their homes to relocate to a state that offers medical aid in dying. I cannot imagine asking my family to do that for me. Nor can I imagine the heartache of leaving the only place that feels like home during my last weeks of life. I, and other terminally ill Minnesota residents, deserve to be trusted with our own end-of-life healthcare decisions.