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.

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Sophomore Year In Review

This year completely flew by! I can’t believe that I’m halfway done with my undergraduate career. I feel like the first semester just wrapped up. If I could, I would rewind to the end of the first semester and start over from there again. I’m a nerd..I absolutely love school, and would stay here forever if I could. I would probably attend the biomedical, business, engineering, and marketing classes just to see what they were like if they didn’t conflict with my schedule. Well, we know that I would attend the biomedical.

But school isn’t just learning, though, it’s the social opportunities that come with it too. I had a fantastic job working on campus this year and got to meet to many incredible people with such drive and passions that I never could have guessed that I would meet coming into the year. While I won’t be returning to work there next year, I don’t regret working there for a minute, and I found my roommate for this summer and next year because of that job. Speaking of that roommate, we both moved into our new apartment yesterday, and it’s awesome.

I wrapped up sophomore year with a 4.0, and made the Dean’s List both semesters. That leaves me with a 3.9 cumulative GPA for the two years that I’ve been here. Woot woot! I TAed for a course this year as well, and really enjoyed working together with the professor and PhD student on that. I take a lot of pride in my academic work, and it is pretty obvious that I also find a lot of self-worth in my academic success. I used to derive my self-worth from being the best on the tennis court, or whatever other sports arena that I competed in as a serious athlete, but ever since my back and brain surgeries I have not been able to compete in those same ways. The classroom has since become my arena, and exams and courses have become my competitions. I of course find self worth in character traits, friendships, and other aspects of life and myself as well, but I would be wrong not to point out the obvious and glaring importance that I place on academic success.

My favorite course this year by far was one of my Child Life courses called Children Facing Health Care Challenges. While it was only a brief overview of psychosocial assessments of hospitalized and chronically ill children, and techniques to support their coping, I learned a lot, and have another course with the same professor in the fall. As someone who considers themself to be chronically ill, I thought that all of the information was spot on, and that the professor did an excellent job delivering the information, even though the course was taught online.

There was one course, though, Early Childhood Intervention, that I struggled with this year for a reason that surprised me. While the course focused on an age group (0-3) unrelated to any treatment or medical procedures that I could recall or even had any health problems with at the time, a particular unit of the class focused on trauma, and I continuously experienced flashbacks from my surgery and other hospital visits as we went into detail about PTSD and how trauma can effect children down the road. I think that the professor noticed, because she came up to me after several classes to ask me mundane questions, as if she was waiting for me to disclose that I was struggling to her. That was really difficult for me, because I hadn’t had any flashbacks in what felt like months, even though it had unfortunately only been weeks, and then I had to sit there and have them multiple times a week.

I am now starting to get my thoughts together for my honors thesis, and that is very exciting. It will be on the topic of end of life for school-aged children and adolescents. I have my committee fully formed, and now it’s time to get in the research zone. I’ll be spending much of my free time reading to get a jump on that so that I can defend this spring as a junior and get it out of the way instead of stressing over it as a senior. I have quite a few friends who are seniors who are preparing to defend this spring as well, so we can research, drink coffee, and complain together.

In other news, tomorrow will be my first day volunteering in the Child Life department at a children’s hospital out here, and I am ecstatic! I am spending the summer out here in Arizona, and I have been warned that I just might melt. I was excited that my scrub pants were black, ie no awkward sweat stains when I take the bus to get there, but then I was told that it gets so hot that no color is truly safe from sweat stains, which was terrifying to hear. Regardless, wearing scrubs feels like wearing your pajamas to work, and I am all about that.

I’ve been trying to forget

I’ve been trying to forget what magazine subscriptions belong to which waiting room offices. I’ve been trying to forget the names of receptionists, and the faces of which technicians blow veins.

I’ve been trying to live a normal college student life.

Well, the music is too loud. The hot yoga classes are too early in the day. And, the excitement over the new (mediocre) Asian cuisine restaurant is overrated.

I filed a maintenance request to fix my bathroom door that had somehow come off its hinges last week. As the custodian’s drill bit whirred and the screws brought the door back to the wall, I remembered. Dr. P’s face came back in focus and he asked me to identify the objects and letters appearing on the screen, pressing the spacebar to set off the thick, mechanical swooshing sound that moved from one picture to the next. I hadn’t seen his face in two or three weeks, and that had been a victory.

We briefly talked about axons, dendrites, synapses, and other basic neuroscience in a class this week. We brushed right on through the PowerPoint slide, not evening mentioning the duties of each lobe and delicate area of the brain. I wanted to pipe up and explain their functions, but I didn’t. The word plasticity was mentioned, and I remembered the sound of Dr. B’s voice. I remember his reassuring response to my questions, reminding me that the brain rewires and relearns.

I’ve been trying to forget, but all I can do is remember.

I have been trying to distance myself from my medical memories and subconscious patterns of reminders over the past month, but life keeps calling myself back to remember. These memories are haunting me, and they mean something. Maybe I’m not ready to forget, or, maybe it’s that I’m not supposed to?

Done for A While

My scan from last month came back stable, and now, I’ve decided to discontinue my regular MRI scans indefinitely. For the first time since my surgery, I didn’t foresee trouble while I waited for my results. I allowed myself to sit within, instead of fearing the unknown.

It didn’t seem possible, but I think that I might actually be letting go of some of the fears I’ve held about recurrence over the past two years. I’ve realized in recent weeks that I might be subconsciously living in perpetual fear that I might escape it, that I might break away and suddenly elude my condition. When you are so used to living in one mindset, it’s easy forget what it’s like to live in another. And while I like schedules, concrete plans, and always being in the loop about what’s going on, these scans are one component of my life that I no longer want to know about. I’ll know when I need to have another scan either by identifying a new symptom, or by feeling in my heart that it’s time. With this matter, it’s ok not to plan.

To put it bluntly, I’m over it. I’m done with the alarms going off in my head that there’s bad news because Dr. B is taking longer than usual to get back to me. I’m done with my heart beating fast enough to outrun Usain Bolt when I see an email from Dr. B sitting in my inbox. I’m done with the stress that comes with scheduling MRI appointments just to hear that everything is still the same (which I recognize is a good thing, of course). I’m done with waking up the week before a scan, and wondering if next week is going to be the week I’m told that I’m dying.

But to be honest, I’m afraid to abandon the super-sick normal I’ve been living in over the past six or so years of my life. I’m afraid that I’ll get a taste of a brilliant, new normal, just to go back to being sick..because that’s what happened last time. It was in the spring of my junior year of high school when something like this last happened. One day, I just woke up feeling free. I had accepted that I had been living with a brain tumor for years, and reached a point where I became comfortable believing that it would probably just stay that way. I let my worries go, and it felt incredible. I spent the next two months feeling what I can only describe now looking back on it as open. I was open to myself as a complete person. I got to know myself and other people without worrying that one day my health would come swooping in to steal the show again. But then, it did. I am afraid that the new life I’m about to adjust to might only be temporary. This also might be the beginning of the rest of my life in the best, and healthiest way possible.

“But, don’t you need those scans to make sure you’re still healthy?”

Healthy isn’t panicking over the possibility of bad news every 4 months. I’m not really living while I still have those scans to think about. I’m not saying that I’m done with them forever, but, I’m done with them for now. Maybe my next scan will be in a year. Maybe it will be in two. Or, maybe it will be in another four months.

Having a brain tumor is part of my identity, there’s no doubt about that. I am still a college student, though, and I want to be able to wake up, feel, and live that way too. Living is not thinking that I’m going to die every four months. Living is somehow taking time to forget that you were ever sick in the first place. Living is not being afraid of dying. And while I’m not afraid of dying, I’m afraid that I haven’t really been living for a while now.

This isn’t “giving up.” This isn’t giving in to pressure from anyone or anywhere. This is opting-out, for now.

Haircuts

The harsh whirr making its way around the sides of my head echoes in my ears.  It sounds just like the drill they used during my surgery. The razor brushes up against my plates and screws. It makes its way up and over the bumps as if this is a motocross race, surmounting one ramp after another. The noise paralyzes me. it’s ok, though, because I’m used to it now. It has been almost two years since my brain surgery, and I still have flashbacks. They used to last for what felt like hours, but now they are only momentary. These flashbacks serve as a reminder of how far I have come, as well as how far I still have to go. I do not expect these flashbacks to ever fully dissipate, and that is ok. Of all of the things I have hope for, this is not one of them. I hope to fully regain my working memory capabilities. To regain all of my old vocabulary. To regain all strength on my right side completely, all of the time. These flashbacks keep me grounded in a sense. They are a way of telling me that the hardest part of my life is over.

I forget about the sound until the next time.