Semester 6 + Summer Update

As usual, I was hyper focused on school this semester. Everything worked out well in that department, and the semester wrapped up with a 4.05 GPA, bumping my overall GPA up to a 3.97. I’ve said it before and I’ll say it again – academics have become my arena for competition now that I no longer compete in sports. Scoring high on an exam, setting a curve, or receiving praise from an instructor is my way of winning tournaments or being seeded at the top of a bracket. I haven’t lost my competitive nature, I’ve just channeled it elsewhere post-sport era.

I had the opportunity to take several courses relating to healthcare administration this semester, which were a blast. It was within these courses that my interests in research were highlighted even more so than ever before. I’ve also spent more time exercising this semester than I have in the past several years, and while I am (DEFINITELY) not the strongest person in the gym, I take pride in marking off the number of days that I work out each week in my calendar.

I may not play tennis or do the same things that I used to do before my surgeries, but I can still do so many things, and that’s important for me to realize. While part of life after all of my medical experiences is adjusting to the medications, need for extra sleep, and increased interest in brain tumor research, it’s also remembering that not everything is different. Many things are still the same. I’m still figuring my life out just like any other college student. And, the best part is that my concerns and dreams are starting to expand out even further past three or five years to ten years and beyond. I never would have thought that having concerns about the future would be a good thing, but when you used to spend every waking moment worrying about if you’re going to be alive next week, being able to worry about where you’re going to be living in 10 years is a strangely nice worry to have. My next MRI scan is in August, I’m starting to feel like everything in my life has hit a stride that makes sense. The only thing that could really go wrong in it right now is another brain tumor popping up, and, I’m really not planning on that happening!

I am spending my summer in the Child Development Lab here on campus and in the Child Life department at the children’s hospital I was at last summer, as well as continuing to conduct interviews for and work on writing my thesis. It has been incredible to hear families tell me their stories and have them open up to me in the ways that they have. What parents have said is what has stuck with me the most, though. I think that this may be because as much as I have asked my parents what it was like for them during the worst of my surgeries, testing, etc., they couldn’t have truly opened up to me because they were still trying to protect me. The parents that I’m interviewing have no reason to omit information and protect me from anything, though. I think back on when my dad first took the bandage off of my head after surgery and how he told me that it didn’t look “that bad,” and how I believed him. He went on to tell me months later that it looked absolutely horrifying, and how my mom almost threw up it was so bad. In that moment and upon first sight, my dad just wanted me to know that even though I had just had a life-altering and major surgery, something as irrelevant to my future as a scar was the last thing I needed to be worried about.

I’m also writing personal statements and applying to graduate schools where I’m hoping to pursue a master’s in social work with a health specialization. I have another exciting opportunity involving writing, research, community building, precision medicine and cancer care, but I can’t say what it is quite yet!

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?

Sophomore Year

My second year of college is officially underway. I am still living on campus in what is considered upperclassmen dorms. I made the decision to stay on campus in case a new health concern arose, as well as to remain in a relatively quiet environment. I have to admit, I do semi-regret the decision. Many of my friends live in nearby apartment complexes and I miss not seeing them as much. However, my single room is quiet and peaceful all of the time, so I am definitely not complaining about my living conditions themselves, just not waking up to my buddies in the morning. The new kids in town, freshmen, have never been so obvious, walking around huddled together like little ducklings with their gold lanyards swinging back and forth. They even managed to start a fire outside one of the dorms last week (WHY?!).

Surprise: I changed my major from Elementary and Special Education to Family and Human Development with a focus in Child Life. I thought that I wanted to teach within hospitals, but, I no longer see myself leading a classroom full of students anymore. My teacher’s college courses have made me realize that while I do find education fascinating, I want to know why children think the way they think, how their families function, and what outside of the classroom makes them the student that they have become. Best explained in one of my McGraw Hill textbooks, “Child life specialists work with children and their families when the child needs to be hospitalized. They monitor the child’s activities, seek to reduce the child’s stress, and help the child to cope and to enjoy the hospital experience as much as possible. Child life specialists may provide parent education and develop individualized treatment plans based on an assessment of the child’s development, temperament, medical plan, and available social supports.” Do I think that I would have learned about or been interested in this career had I not spent so much time in the hospital? Probably not. Do I think that this career best suits me? Absolutely.

Announcement: I also have a job on campus this year! I am the Social Media Chair for an organization that focuses on community service, community outreach, social entrepreneurship, innovation, and student-driven social change. We work as connectors to other organizations and resources on campus as well. The job keeps me busy, which I like. I was weary about disclosing my medical conditions at first, but then I noticed that a co-worker was wearing a medical alert bracelet (for diabetes), and we bonded over shared stories and experiences of being the “sick kid” at school. Another co-worker missed a day with a massive migraine, and we bonded over headache struggles. I wondered if I should disclose my various conditions to the faculty advisor, but waited a few weeks until doing so. She was very supportive, and even shared that her brother-in-law had passed away from GBM. It wasn’t one of those cancer comparison stories where a person tells you about someone they knew with the same condition who died because they were so uncomfortable that they didn’t know what else to say. Instead, it was a way of her reaching out and saying hey, I know that this is hard, and I will do whatever I have to do to help you. I really appreciated that gesture, as well as how co-workers have checked in with me during events to see if the noise level is too loud, or to ask if I need to take a quiet break somewhere. Working with this team of tremendously hard working, dedicated, and driven students has been an incredible experience so far, and I can’t wait to see what the rest of the year brings for our organization.

Exercise plan: I’ve been really into swimming since I returned from First Descents this summer, but now that I’m back on campus I haven’t been getting into the pool as much. I’ve been going to the gym with one of the co-workers that I mentioned above, and I can’t tell you enough how helpful it is to have someone else there with you to cheer you on. I also signed up for a yoga class this fall, because why not? I had to get a doctor’s note to prove to the instructor that I wouldn’t pass out and die in the middle of class once I disclosed my medical history to him. I’m not sure that the note was something that I legally had to provide for him, but it wasn’t too difficult to acquire, so I did it anyways. To my surprise, I was actually pretty dizzy for most of the first class, 99.9% likely due to all of the head movement. The class will carve out a set schedule for exercise during my week, as well as strengthen my back.

Not a surprise: Once again, there was an awkward situation when it came to setting up disability accommodations with a professor. Last semester’s incident was horrendous, but this situation was more of an kind-hearted accident. I had reminded a professor to read off the statement provided by the disability resource center that requests another student in the class to scribe and submit their notes to the DRC for $25 per credit hour – the student essentially gets paid to submit a copy of their notes, something that they are already doing for the class anyways. He then added an extra slide to the lesson’s PowerPoint and made the announcement mid-class where he had inserted the slide so that he wouldn’t forget. Just as class ended, he looked at me, asked if he had asked about a notetaker, re-asked the class, and then asked me if he did the announcement correctly. This professor was very nice about it all and meant very well, he just didn’t realize that he had singled me out. The purpose of announcing that a notetaker is needed is to provide an accommodation for an anonymous student in enrolled in the course, not to identify them to the entire class. This accommodation serves as a backup plan for days when I have a seizure, or when my hand/arm is too weak/heavy to take notes. Having an extra copy of notes to refer to also helps in case I wasn’t able to write down a point fast enough. As I move farther and farther away from my surgery, I find myself feeling the need to justify any accommodation or “special treatment” that I receive more and more, even though that I don’t have to. This feelings stems from the notion that people who don’t look “sick” don’t need help. But, we still do.

Check back here in another week for a TWO year post-cranio reflection.

SPE 222 – Orientation to Education of the Exceptional Child

SPE 222 is one of two courses that I am taking towards my elementary and special education degree this semester. SPE 222 is by far my favorite course of the year, and it’s just getting started. I connect with the class on a very personal level. I walk in a little bit nervous, and I’m not sure why, because I am so extremely public about my medical history, but I have continued to leave feeling all warm and fuzzy inside. We learn about disabilities, and as someone with a “disability” of sorts, I feel like my classmates are learning about me. The course “provides an overview of the education of children with special educational needs from birth through age 21, and is intended to provide background to allow for the meaningful inclusion of diverse learners in educational environments.”

In my mind, not only am I learning about my future students, but also about the system I would have navigated if I had had my brain surgery earlier than my senior year of high school. If my crantiotomy was in elementary or middle school, I would definitely have more cognitive delays. The resource room I noticed in passing would have been my homeroom. I would have needed a 504 plan. A 504 plan refers to section 504 of the Rehabilitation Act and the Americans with Disabilities Act, and explains the modifications and accommodations needed for students to have an opportunity perform at the same level as their peers. In a sense, I have a 504 plan through my accommodations via the Disability Resource Room here on campus. I have most of my textbooks available via audio for extra enforcement because too much reading leads to unusual fatigue that I had not experienced before surgery. Blame it on the gaping hole in my left insula (aka the speech and language hub).

Maybe my grades would have been based on alternate achievement standards when I was younger if my speech and language capabilities had taken a bigger hit. Maybe I would have needed alternate assessments, or supplementary aids and services. A direct quote from the textbook states that those with “traumatic brain injury are most likely to be educated in a hospital or their home (U.S. Department of Education, 2011).” I know that the traumatic brain injury the text is referring to is most likely geared towards car accidents and not brain tumors, but the information is still relevant. After all, any disruption or subtraction of gray matter is a brain injury. We’re covering students with traumatic brain injuries in Chapter 13, 10 chapters from now, and I will most likely write a review of the chapter on here afterwards.

I’ve noticed a similiarity between neuropsychology testing and IEP (Individualized Education Plan) meetings. Major components of IEP meetings include: Evaluating current levels of performance, sharing thoughts about resources, priorities, and concerns, and sharing visions and expectations for the student. Meetings also involve considering student goals, placement, and services as well as determining modifications for assessments. A neuropsychology evaluation starts with a 6-8 hour evaluation and then moves on to discussing results, and determining strengths and weaknesses. Patients are also given advice on how to improve their functioning, as well as what accommodations they might need when returning to work, school, etc. Then, like how IEP meetings are revisited, patients visit six months, a year, etc. to retest where they are at, the progress they have made, etc. and set new goals. 

Course and Vocabulary Update

I recently explored enrolling in a course regarding “the business of cancer.” The course is being offered for the first time this Spring and looks at cancer as a political and economic activity. It’s less about how people experience cancer as an illness, and more so about the kinds of stories that get told about cancer. Unfortunately, as a freshman I am 13 credits short of eligibility for this upper-division course.

I emailed back and forth with the professor offering the course, sharing articles and excitement about the potential of teaching the history of cancer in both a scientific and sociological context. After meeting with the professor today, I learned that the course will be offered again in the Fall, so I will enroll in it next year after having my freshman year under my belt.

It turns out that the professor’s mother has a brain tumor. After the description of “benign” and “not uncommon” was given, I asked if it was a meningioma. Bingo. She said her mother had been treated with radiation because the location was hard to operate on, and we proceeded to discus proton beam radiation as her treatment. If there was a brain tumor quizbowl team in high school not only would I have been captain, I would have been an All-American.

My vocabulary continues to build since surgery. The shrinkage is much more apparent to me now that it has expanded again. Looking back at videos I took predominantly during the first six months after surgery is eye-opening. My brain resorted to using the most basic descriptive words following surgery such as “good,” “great,” “awesome,” etc. instead of recognizing words like “phenomenal,” “encouraging,” or even “exciting” as options. I’ve been writing words in the margins of notebooks and looking them up after class to further expand my vocabulary. It’s incredible how simply hearing a word again brings back the recognition and application.