Why I Go Gray

My first craniotomy was on May 27, 2015. I had just turned 23 years old in March. Six months prior to surgery, I walked into urgent care with what felt like a sinus infection. I explained my symptoms, and the nurse told me I needed to go to the ER “just to be safe.” I was annoyed. I told the nurse, “It’s a sinus infection. I get these all the time.”

Well, there I was in the ER, getting a CT scan of my head. What felt like hours later, the doctor came in and said they found “something” and wanted to do an MRI. The MRI also showed “something.” I was told it was most likely a benign lesion but to follow up with a neurosurgeon. So we did just that. Even going to get a second opinion, but no doctor seemed to think it was an issue. Until my third opinion. I finally found one who didn’t want to take a risk! He ordered another MRI, and sure enough, it had grown. 

Surgery was set to go in May. After surgery, pathology results came back as grade 2 astrocytoma. I remember my doctor saying the words “malignant” as I sat in the exam room. I didn’t hear anything else they said after that. Being so young and diagnosed with brain cancer felt like such a kick to the gut. These were my growing years. I was supposed to be enjoying my early 20s, finding myself, and finding a career path. It all came to a halt. 

The year after surgery became a blur of MRIs and follow-ups. I desperately needed a life change. My MRIs were stable, and it felt like a good time to pursue a dream. My boyfriend (now husband) and I moved to a new town to start fresh. We wanted to live in the mountains and we made it a reality. Something I would have never done if I hadn’t been faced with a brain tumor. 

My MRIs continued to show stable results and, by the time I was 27, life started to feel “normal” again. Cancer wasn’t at the forefront of my mind day in and day out. Four YEARS to adjust. I started focusing less on my fear of dying and more on building my life and picking up the pieces of the previous years. 

I enrolled back in school and decided I wanted to be a nurse. All my credits had expired and I was starting over. I remember feeling angry that so many years felt stolen by cancer. But I pushed forward. I was always so afraid to tell people that I had brain cancer because I felt like they would think something was “wrong” with me or that people would think my brain didn’t work the same. 

After I finally found community, I started opening up about my cancer diagnosis. “Don’t worry, I’ve always been this weird!” I’d tell people. But, after going back to school and landing myself in a nursing program on my first try applying, I started becoming more confident. I felt like this somehow proved that I was normal. Looking back, I am sad I didn’t open up sooner about it. So when the nursing program started, “I can do hard things” became my mantra, and it was empowering. I continued to make the dean’s list every semester of nursing school. I don’t say this to brag. I just genuinely think it’s so important for people to know that just because someone has a brain tumor doesn’t make them less intelligent, active, or creative. (I realize that some people HAVE been debilitated by their brain tumors, and my heart breaks for those individuals). I graduated nursing school and landed my dream job in an ICU of a level 1 trauma center. My goal was to eventually work in Neuro ICU. I had been working for about a month and a half when my routine MRI came around. At this point, I was so used to MRIs that I’d fall asleep in the machine. But no matter how many years passed after my initial diagnosis, scanxiety never did go away. I just got better at managing it. 

After leaving the hospital, I grabbed my dogs and headed out to my favorite trailhead so that I wouldn’t just sit and refresh MyChart for several hours. I wasn’t even back in my car when my phone hit service and I saw the email “new test results available”. I opened it and read it. “No, no, no”. It was growing. I couldn’t get to my car fast enough. I was only a few minutes from home, and I was sobbing. “No. This can’t be right. I’ll get home and read it on my computer”. Same results. I called my friend who lived next door, and she sat with me while I cried. How was I going to tell my family? How would I tell my husband? Would I lose my job? How were we going to financially get through this? I had JUST started my career. Why now?! But there was no stopping it. I told my husband when he got home from work, and then I called my parents. 

Things were moving fast; before I knew it, it was November 3, 2022. My 2nd craniotomy. I recovered from surgery for a few months and then immediately underwent 30 rounds of proton beam radiation and chemo followed by 12 rounds of a higher dose chemo. Chemo ended in March of this year. Before radiation was even over, one of my best friends found out her tumor had progressed to glioblastoma. She passed away shortly after. Her death rocked me to the core. She was the only one who understood. The one person who I could say anything to, and she just got it. 

I felt a fire in me to do something, to bring awareness to this awful disease that affects so many young people. So I contacted the organizers for Gray Nation Endurance. Prior to surgery and treatment, I would run regularly and enjoyed it, so I started fundraising and running in local races in my late friend’s honor. At this time, I was undergoing chemo but still signed up for the races. 

After race #3, I noticed that my body just wasn’t recovering like it used to; my joints ached, and I felt incredibly weak. It was clear that the chemo was taking a harder toll on me than I thought, so I took a step back from running. It felt like I was taking a step back from making a difference. Through the year of treatment, I found a lot of things to not come as easily to me anymore. It’s been incredibly difficult to navigate yet another new normal. 

Once again, I’m at a pivotal point in my life where many people’s lives are taking off. I was SO excited to start my 30s, yet cancer stole my first couple of years again. I felt isolated and alone. Many of the local support groups were made up of older people.. many of whom were retired or already had a family. I felt like I couldn’t relate to anyone. I returned to work seven months after surgery and worked full-time through chemo. 

I did not go back to the ICU, and for a while, I was pretty bitter about that. I felt like my body couldn’t handle that adrenaline level anymore. It took a while to accept but I’m so thankful that I took a job that was more aligned with what my health needed. I think the biggest thing that I wish people knew about being an AYA or any young person with a chronic illness is how lonely it can feel. How isolating it really is. We have to continue to navigate life, work, marriage..building our lives and making decisions around a diagnosis. I hope that people see that people with brain tumors/cancer view the world just a bit differently. 

For myself personally, I hate giving my tumor any credit, but it pushed me to be more than I thought I could be. It pushed me to take chances, make the move I always wanted to make and pursue the things I’ve always wanted to pursue. But I wish I could have learned the art of living fully a different way and not with a brain tumor diagnosis. Living with a brain tumor has come with a lot of adjusting, physically and mentally. 

The mental health aspect of having a brain tumor is definitely not talked about enough. It’s just not normal to be this young and scheduling life around oncology appointments. Therapy has been huge in my life and I’m so thankful for having the privilege of this resource. We are all dying — it’s just us brain tumor patients have had to face our mortality a lot sooner than most. 

I think it’s important for people to know that there is STILL no cure. There are advancements, yes, thanks to the work of organizations like NBTS but no cure. As a 32-year-old woman, that is absolutely terrifying. But I will continue to live this life and fill it with as much joy as I can and pray/manifest/beg the universe that we find a cure so that I never have to go through another surgery ever again. This is why I will never stop talking about it.

TAGGED WITH: astrocytoma

Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.