The Ebb and Flow of Cancer

The fear that is most palpable to me is about the changes and loss of normalcy that will come between now and the end.
Photo Becky Ankrum Photography

I moved to Finland when I was 19 for music school. I had romanticized the idea of living in Europe since my passion for playing the trombone took off in my younger years in Blaine. My trombone teacher in Minnesota was from Finland, and I became obsessed with living in that country. My dreams were realized after I passed an audition and was accepted at a college in Helsinki.

Soon after arriving, in 2017, I was doing out-of-town orchestral work and staying for free at fancy hotels in Europe. I did a solo with the Finnish Radio Symphony Orchestra. I became a marathon runner. These experiences were amazing.

Positivity and “manifesting the life you want” was my vibe. I bought a happiness planner. I wrote that I wanted to win an orchestra position in Finland. I wanted to be fit and healthy. I maybe wanted a boyfriend, but I definitely wanted a greyhound.

At the end of 2017, I started struggling to breathe through my right nostril and had issues with my right ear clogging up. As a musician, the symptoms were troublesome as they affected my hearing. The condition lasted for months. 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.

Finally, I was seen by a highly respected ear, nose, and throat doctor. He ordered an MRI and other tests, and 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. In April 2018, I was diagnosed with stage 3 rhabdomyosarcoma — a rare and aggressive type of cancer that forms in soft tissue. I was 22 and living alone in Helsinki when I got the diagnosis.

There was a year of intravenous chemotherapy and facial radiation treatments. I suffered numerous infections, landing me in the emergency room multiple times. I stopped playing the trombone for five months as I underwent treatment. I had to give up running, because of an issue with my lungs.

Cancer eventually robbed me of the motivation to pursue these things that I loved most. Thankfully, my mother could join me in Helsinki to help me get though treatment.

After a year of treatments, my scans looked clean, but a biopsy in May 2019 revealed that the cancer was still present. In April 2020, a three-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. I did a short bout of radiation after the surgery. The doctors told me that I should be good for a while. Sadly, that hope did not 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 is when the word “terminal” was introduced into the conversation.

I made the difficult decision to return home permanently to Minnesota to be with my family. My home in Finland had been the only thing I felt like cancer had not yet taken from me. When I lost that I felt like I lost everything. I started chemo a week after returning, in September 2020.

The chemo yielded remarkable results, and I had no evidence of disease for the first time since my diagnosis. Yet six weeks later, tests done during an intensive care unit stay showed that my right lung cavity was filled with “innumerable tumors” — 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) to buildup of fluid and cancer cells — is 4 to 12 months. September 2020 is when I was diagnosed with MPE.

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 the seriousness of my cancer. I was on heavy pain medications, which make me mentally foggy and sleepy. I could not have a cocktail when out with friends, because of interaction with the opioids.

I started a maintenance chemotherapy that was shrinking the tumors for about six months, but recently had scans that revealed the tumors are big again. I am trying to apply to a new drug trial, but do not yet know if I am accepted. At least the pain is less severe, so I am not taking opiates right now.

The hardest part about living with cancer is the ebbs and flows. It is traumatic to have one foot in the grave for a month, then suddenly be doing better the next.

I have spent a lot of time thinking about dying and my wishes. The fear that is most palpable to me is about the changes and loss of normalcy that will come between now and the end.

Becoming an Advocate

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 is not that I strongly believe I would take the medication, but having the option itself is important. Cancer has repeatedly robbed me of my own power and control. Having the autonomy to obtain an aid- in-dying prescription would provide a much needed sense of control and peace of mind.

I wish more people understood that medical aid-in-dying is not about wanting to die. It is for people who want to live but know that disease is taking their life from them.

It is appalling to me that terminally ill Minnesotans who want autonomy need to relocate to a state that offers medical aid in dying. I cannot imagine the heartache of leaving the only place that feels like home during my last weeks of life. I believe terminally ill Minnesotans deserve to be trusted with our own end-of-life health-care decisions.

I am now a volunteer with Compassion & Choices so I can advocate on a larger scale. It gives me purpose.

Learn more: compassionandchoices.org