I was diagnosed after months of headaches and facial numbness. An MRI showed an inoperable tumor on my brain stem. I got the diagnosis all alone in a doctor’s office while my mom rushed to the hospital. When the doctor told me I had a tumor and that it was inoperable, all I could respond with was “...okay”.
“Do you understand what I’m saying?” she asked.
I obviously understood but in my mind, I had a tumor; that’s nothing being sad or angry would change. I had a tumor and I was going to overcome it, just like I did when I was 12 and had my first tumor.
doctors said I’d likely have 12-18 months to live...just what every 21 year old college student is expecting to hear
A biopsy later showed that the tumor was cancerous and very aggressive. We went to OSU in Columbus for a second opinion and they confirmed. Given the tumor type and where it was located, doctors said I’d likely have 12-18 months to live...just what every 21 year old college student is expecting to hear. I did chemo and radiation (as well as an alternative treatment, which I believe was the real helper) and my tumor was very receptive but by the end of my first five rounds of chemo, my body was already done with it. I couldn't continue that chemo anymore because of my liver. The next option was a more aggressive chemo which had even worse side effects. They told me without chemo, I would probably live about 6 months, but I decided against the more aggressive chemo. We went for a second opinion who confirmed.
At about this time, I started to take a turn for the worse. I spent months in bed not eating and getting sick. I thought it was the beginning of the end. After things started to look up for me health wise, we still weren’t ready to give up, so we went for a third opinion at the Mayo Clinic and they said I could restart the original chemo which was good news... and additionally they gave some credit to the alternative therapies I had been trying as to why my tumor responded so well to treatment.
It was always in my mind why I was able to be so reckless with my finances and take so much time for trips
Over the next year I would really take “live like you’re dying” to the max and became downright reckless with my finances. I took nine trips and visited seventeen states and two countries, and racked up quite a bit of credit card debt. My trips included a motorcycle trip down Route 66; horseback riding in Colorado; whitewater kayaking in Oregon; surfing, ziplining, and fishing in Mexico, and a two road trips with my two of my brothers to New York and Florida. My life was full of trips, memories, and excitement but it was always in my mind why I was able to be so reckless with my finances and take so much time for trips. Spending the way I was, and not working was giving up to cancer. I decided that “fuck it...I’m going to die early anyway” wasn’t the motto to have.
This way of living made my good health seem anticlimactic. I felt bad for feeling/looking so healthy. I felt like my tumor was supposed to grow...like I was supposed to die. I might have years to go if these treatments keep working. I’m not a statistic. That being said, I still plan on taking trips, but I also plan on returning to school for welding in the fall, and doing more within the AYA Cancer community.
I’ve met so many amazing people through resources like the Gryt App, First Descents, and Stupid Cancer, and I wouldn't be where I am in survivorship or advocacy if it weren’t for these organizations and friends
Meanwhile, my tumor has almost doubled in size (I had to quit the alternative treatment when traveling) but didn't cause me any severe problems other than slight balance and speech issues at times. Needless to say, I beat the 12-18 months they gave me. I’m currently almost two years out and pretty much asymptomatic, just with much higher credit card bills, more trips planned, memories to make, life to live, and hopefully less (if alt therapies are working) cancer to kill. Luckily too, I have a great support network. I have an amazing mom who is with me every step of the way, an incredibly positive family, a fraternity full support, and countless friends I’ve made along the way. I’ve met so many amazing people through resources like the Gryt App, First Descents, and Stupid Cancer, and I wouldn't be where I am in survivorship or advocacy if it weren’t for these organizations and friends like Ellis, who is just one example of how to truly get “out livin it” and not let cancer hold you back.