Girl Interrupted – Alysha’s Diagnosis Railroads Aspiring Nursing Career
A Story of Strength and Independence
I used to feel strong, that I knew what I was doing, and that I had a plan, and now I feel lost, the only plan and force I had got taken away from me. I feel weak now, like I’m a baby. It takes away YOU. I had worked hard for my life and I was getting it and in days I lost it. In one sentence; you kind of know, but then they say, “You have cancer.” I’m 25. How do I have cancer? I’m healthy.
My journey began in…
March. I had pain and tightness in my chest when breathing and was admitted to hospital. Pericarditis was a possible diagnosis (fluid around the heart). It was drained with a paracardial infusion. This is how my journey began. The doctors said that they don’t know the cause in 1 in 3 cases, and I went home. I had no idea how my life was going to change and poured all of my energies into my nursing studies.
In August the pain came roaring back. I spent 2 days, then 5 days, then 5 more days in the hospital. The fluid on my heart came back twice, it was drained twice. Every test was coming back clean. “It must be a virus,” they said. I felt tired and defeated. I felt frustration at whatever this was interrupting school. I was in my second last semester of Registered Nursing at University of Lethbridge. My professors were very understanding and helpful, but my whole semester was being interrupted.
In September it was decided to leave the drain in for the weekend when the pain sent me to emergency again. The fluid was back. “Rest. Take it easy.” Were my instructions. I could attend classes but couldn’t keep working. I had to keep the stress down.
October is the month for me where life as I knew it would never be the same. Stabbing back pain, a trip to the ER, the discovery of nodules on my lungs, so many tests, a chest CT, chest x-ray, endoscopic, a mass on the back of my heart, an ambulance from Lethbridge to Calgary, the possibility of open heart surgery.
I was overwhelmed with how fast things were moving, worried about surgery interfering with school, lots of tears, communicating with my parents, friends, my stomach was in my throat, like being on a plunging rollercoaster, suddenly everything is different. I had things to arrange, pets, my partner’s work, school, home, rent, roommates, car, sleeping, staying, letting my parents know when I was going to arrive, my family arriving at the hospital. There was a lot of uncertainty.
No longer do I measure these events in months, but now days and hours. Hurry up and wait.
Friday - about a dozen invasive and painful tests.
Saturday – a bone scan on my knee. It’s my 25th birthday. “What’s wrong with my knee?” The WORDS that shifted my reality; the resident said, “It’s most likely cancer that has spread to your bones, but we won’t know for sure until the biopsy.”
Monday – I phoned my aunt to come to Calgary. My mom was going to need support.
Tuesday - bone scan. Nick had to call my mom. She could hear me crying, it was probably cancer, but we didn’t know for sure. The biopsy was to be done right away. Another painful procedure; the biopsy from my lung. We had to WAIT again; 24-48 hours for these results.
Thursday - Stage 4 cardiac angiosarcoma. Nick was with me. My family by my side soon after. I got news of cancer and acceptance of my desired preceptorship spot the same day. I’d worked so hard to get that spot. I’d have to let my spot go. Kicked when you’re down, happy f*n birthday to me. Life as I knew it is over.
Friday - the oncologists would meet on Monday to determine my treatment plan.
How do you take stuff like this in? My life crashed in front of my eyes; stage 4, spread from the original spot through my body.
Monday - the doctors shared my treatment plan. It is a very rare cancer.
Tuesday - I started Chemotherapy. I started Chemo on a Tuesday. This is my new normal; chemo on Tuesdays. Blood work Mondays. Clinic at the hospital on Mondays. I’m on oxygen and have a portable tank. The tank lasts an hour and a half.
I DON’T WANT CANCER TO DEFINE WHO I AM.
Life adjustments so far: Nick and I have had to pick up our lives and move to Calgary. We had to find temporary homes for our dogs. Nick is trying to transfer his office location to Calgary because I have to be near the Tom Baker Cancer Centre. Nick’s employer has been a huge supporter. For now, I have moved back home. I am struggling with the loss of independence and having to depend on people again; for driving me, for monitoring my pain medications, but most of all I am grieving the interruption to achieving my nursing degree. My written request for allowance for partial completion of my semester was denied.
Effect on my family: It’s really hard. I’ve always been strong for the people around me. Watching them hurt because I’m not well breaks my heart. You feel like a burden. They know I’m strong but now I feel weak, but now their daughter has lost part of who she is because I literally physically am not strong, and now I need to ask for help. It’s not just my life that’s changed, it’s everyone’s life around me. Not just my life, Nick’s life, my mom’s life. The worst part is going from completely healthy to not. I barely even got sick as a kid.