A surprise worth sharing

Being here, senior year, is a surprise worth sharing.

I thought maybe I would make it through the first, or second year of college. Then I would have a recurrence, go through treatment again, and die. It wasn’t just a fear; it was statistical and founded in research. Brain tumors are the number one killer of those under the age of 19 and with my tumor type a recurrence within the first two year isn’t all that uncommon. Now at 21, I am graduating college. I have not had a recurrence, and I am stable. My next scan is coming up, but I’m not even worried. In fact, I forgot that I even needed to make the appointment. Whatever happened to scanxiety?

I never thought that I would make it to this point. When I entered my freshman year of college it had been less than a year since my awake-craniotomy. I was still having flashbacks to surgery on nearly a daily basis. My life was living in fear moment to moment, wondering when the next seizure would hit, when I would be told to pack up and come home to live with my parents because I couldn’t safely live on my own anymore. I thought that I would go to school for as long as I could, learn as much as I could, and just try to experience as much as possible for as long as possible.

This didn’t really hit me until I defended my thesis because a thesis is something that people plan for. They start their research early, they select committee members, and they write for years. I did so, but I didn’t expect to actually follow the plan through to the end, because I didn’t think that I would get the chance to. The night before I defended I realized how shocked I was to be in this position. It was so…satisfying. The same professor I met my shell-shocked freshman year, back when I couldn’t sit through a film in class because the sound was too loud, was the same committee member that I met with every week this semester to put the finishing touches on my thesis, and the same committee member who saw me blossom into someone who believed in the possibility of a future.

For so long I just didn’t think that one would come. I was so afraid of tomorrow, of next week, next month, the next scan, that when I finally started being able to plan years in advance it seemed beyond my wildest imagination that I would actually get there.

Three Years Later

Here I am, three years later.

This is a HUGE milestone. Today marks three years post-resection, without recurrence. I have a lot of mixed emotions to describe how I feel about today, but am predominantly overwhelmed with joy and disbelief.

I was incredibly privileged to have access to the surgeon that I did, and I will never ever stop being grateful to Dr. Mitchel Berger at UCSF for what he did for me.

Right after my surgery, I didn’t plan more than three seconds in advance. My eyes would flicker from one corner of the room to the next in amazement that I was still there, and that everyone else was still there with me too. My friends and family never left my side, and I was lucky for that. Many people in the brain tumor community can’t say the same, and I cannot thank all of you for staying by my side when I needed you the most.

When I came to ASU just under a year after surgery, I had a hard time planning more than three hours in advance because I would get so fatigued. Making plans with friends was difficult because everything was so subject to change. But my friends were awesome and so incredibly accommodating.

Then, six months or so went by and I mentally advanced to allow myself to plan three weeks out. I let myself think into the future. The first semester of my freshman year ended, and I advanced to planning a few months at a time in advance. It felt strange, but I was still living from one scan to the next in terms of what I’d let myself think and do. I wasn’t thinking about the next academic or calendar year, summer plans, or classes for the next year. I couldn’t let myself do that because it wasn’t safe to do yet. Then last year, something huge happened. After two years of good scans, I started to plan years in advance. Now, I’m envisioning myself three years from now working in the field, walking around the halls of a hospital, visiting patients. Three years later, and I can now see myself living in the future. This is a gift that I am very privileged to have, and I am not taking it for granted.

I felt like no time passed between the first year after surgery, and that hardly any passed even when I reached the second. Year three finally feels a little bit different. I’m feeling personal growth. I’m finding parts of my identity outside of my health. And I’m succeeding in so many new, different pockets of life. I recently graduated to having scans every 6 months (3 years later and I’m still forever sleeping in a magnet..), so that’s something to be proud of as well. Here I am, now taking on year four.

I read somewhere that scars like this are like a tattoo, but with a better story. My story continues.