I was first diagnosed at 12 years old with stage 4 Hodgkin lymphoma, a blood cancer. I didn’t even know what the word cancer meant. I remember sitting at the kitchen table with my family, laying my head down and sobbing because they told me I would lose my hair. I have lost my hair five times since. You see, fighting tooth and nail for your life at a young age produces a certain type of grit ― one where you choose daily to do hard things while also stopping to smell the flowers on the way, one where you enjoy the little moments most take for granted because tomorrows were never promised. The future isn’t guaranteed to anyone, but I had the papers to prove it. I fought hard and won, completing three months of chemo and nine weeks of radiation. I spent that year’s holiday in Hawaii with my family because of a Make-A-Wish trip. It was then that something sparked in me that at some point in my life I would give back to this community, to be one of the ones who see the vulnerable, meet them where they are, and give them an opportunity to have greater days and memories made.
I spent 10 years in remission. There was a time in my life that I would have panic attacks about reoccurrence, but for the most part, I lived my life with a determination to get the most out of it. I spent a lot of time outside, developed a love of traveling, and dug deep into my community. Life was beautiful.
In 2019, I flew home from California because I was experiencing severe breathing issues. I didn’t have insurance at the time, but a kind doctor at a low-cost clinic advised me because of my history that I needed to get checked. About a week later, my parents drove me to the ER because I couldn’t walk to the bathroom without stopping to take a breath. They found a lime-size tumor cutting off 70% of my airway. I didn’t leave the hospital for a month. After surgery after surgery with many complications that left me unable to move in the ICU, a team of six doctors later determined it was a reoccurrence. I started chemotherapy and immunotherapy which shrunk the tumor enough to allow me to start working again.
I began to experience pain in my right hip which led to the diagnosis of avascular necrosis. The steroids and chemo were eating away at my major joints causing them to collapse. At this point, the immunotherapy was no longer working, and we needed to find another treatment. I then went to the National Institute of Health and received CAR-T-cell therapy as a clinical trial. My mother was my caregiver and my rock, seeing everything that I went through and feeling it just the same. We made the most of it as I remember her taking me in a wheelchair around the hospital in search of the best coffee and food.
Unfortunately, the clinical trial didn’t work for me, and I flew home to recover and continue to search for more treatment options. At this point, my body was battered and bruised, had been through hell, and was tired. But I wasn’t done yet.
I spent the next several months recovering, as well as getting both of my hips replaced due to the necrosis. This gave me new strength and confidence as I was finally able to walk again. When I first stepped into my house after the surgery only using a walker, tears were flowing down everyone’s face. This was a turning point in my healing!
In the fall of 2020, I received an autologous stem cell transplant in Oklahoma City. Since that transplant, I have also gotten my right shoulder replaced and been through physical therapy. It was there that my physical therapist gave me a Golden Retriever as a gift to be trained as a therapy dog. She is my best friend and makes my days so much brighter.
If I could give advice to anyone reading this, I would say that it is of the utmost importance to celebrate the moments ― birthdays, anniversaries, heck, even brunch on the weekends. Everything can become a precious moment that you can hold close to, and it may help you get through the tough times ahead. Love the ones around you, near and far, soak up the days with good weather, and have slow days on the ones that don’t, and please, eat good food.
So, cheers to having a gritty life, and you can meet me at the dinner table.
Elisabeth
stage 4 Hodgkin lymphoma (HL)
