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.

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Blackout or Backout

A common phrase for students at my school when the football team dons the all black uniform against opponents is, blackout or backout. Today, I backed out of an elevator and blackout on the floor outside of my dorm room.

I’ve had a bad cold for a couple of days now, and I went to bed last night at 9pm. My entire body was so achy that the water in the shower almost hurt. I woke up at 8am this morning, threw on a hat to cover up my messy hair, and headed downstairs to get some food from the dining hall before climbing back in bed. As I walked down the hall towards the elevator, I realized that my body was still incredibly weak and that it would be important for me to get back in bed as soon as I had finished eating. I got in the elevator on the 5th floor, my floor, and the elevator made two stops, on the 4th and 3rd floor. By the time the elevator reached the fourth floor, my vision had started to cut out, and everything went black by the 3rd floor. The next thing I knew I was on the first floor outside of the elevator and on my back, and one of the maintenance workers was standing over me and asking how many fingers he was holding up (3). He called for the campus security to come, and they did. The EMS came, checked my pulse ox, EKG, and then advised me to go to the hospital to get an iv line for some fluids.

What bothers me most is that not one of the three other people in that elevator helped me. Not one stayed or called anyone to help me. I was left alone on the ground for what was probably was not very long, I mean, it’s pretty easy to spot a body laying on the ground, but come on..you’re supposed to help someone when they’re in need of help. Sheesh. Today’s experience was also an excellent example of the importance of patient and caregiver advocacy. A friend drove me to the health services center on campus, and after waiting for about a half hour, she noticed that several students had been admitted before me, even though they had arrived far afterwards. My friend took it upon herself to ask where we were on the docket, and she soon found out that they had forgotten to enter me in the system. So, pager number 29 that I had been holding on to was more like pager number twenty-nothing. My friend then strongly asked if we could be seen as the next patient, as we had waited and, as far as we were concerned, making sure that I didn’t pass out again was more of an emergency situation than cutting someone’s leg cast off. I was too weak and exhausted to ask many questions, challenge any tests or doctors, etc. but she wasn’t. She asked if a needle was sterile because it had been laid down on a table before entering my finger, she asked if the second EKG of the day was really necessary, and she made sure that there was a bottle of Gatorade in my hand all day. What would the world do without patient advocates?

Two Years Later

Two years ago today I had awake brain surgery. All 50 (technically 49) stitches, a brain drain, oxygen tube, multiple arm and toe IVs later, I emerged from the OR. My eyebrows looked great, but the rest of me was definitely not ready for senior photos. I look at the photo below and see power. I see my body’s resilience. Perhaps most importantly, I see me smiling in my sleep and think to myself, “just another day in the life,” because it’s true.

two years 2

I’ll spend most of the day wondering how I got here. How I got to a point where professors are surprised that I’m the one who emailed them about brain surgery and epilepsy when I look so “normal.” I originally planned on posting a recap of what I remember from the morning of, during, and night following surgery, but I deleted it. I’m sure that it would have made for a great reading, but it just didn’t feel right. Maybe next year. People have asked why today is so important to me. They can understand how one year later was significant, but are confused as to why I find two years later to be just as meaningful. The answer is simple: Awake brain surgery isn’t just something that you undergo and then forget about. It’s not that you don’t want to, but rather, that you can’t. I take the tranquilizes that are anti-seizure medications 3x a day, and they are a reminder. I am cognizant about the amount of noise I can be around before it completely drains my energy, and they are a reminder. I have to be aware of exits in the room so that I can leave as soon as a migraine is coming on, or if I wish to be elsewhere when a seizure makes its presence known in full force. I have to be on duty at all times.

When my Dad helped move me back into college this year he asked me if I remembered what Dr. B had told him when I was resting in the ICU. I didn’t. He told my Dad that “You just gave her a shot at life.” And here I am. I’m a college student who wakes up every day on my own, goes to class, makes the Dean’s List, makes friends, and dates like any other college student out there. I am normal in many ways thanks to Dr. B.

I had access to one of the world’s most talented neurosurgeons. I didn’t have to “fight” as hard as some might think. I got lucky, and now, I manage my body and brain the best that I can. I occupy a body that could have, would have, should have etc. been many different things than it is today. The combative language that people use when describing chronic illness make it seem like you are either aggressively using all of your energy to stay alive, or that you have given up. I didn’t have energy to expend either way. I woke up every day and took the medication that I was prescribed, and it worked out. I woke up in the middle of the night when the steroids called out to me. I drank the chocolate milk that they commanded me to crave. I went for short walks and held onto my Dad for balance. I watched movies, and I napped in the two months immediately following my brain surgery. I existed for the time being, and that was enough. That was enough to save my body so that I could rebuild my mindset and fully acknowledge a shift in perspective. Now, if I spend too much time thinking about the surgery I’m bound to go insane. How could it be that I’m this functional after all that happened? I have friends who have spent extra time inside hospital walls after trying to answer that very question. But, if I don’t acknowledge the surgery, then I’m selling myself short of my incredibly miraculous history. It’s a fine line to walk.

And just like that, it hits me. Out of nowhere a memory takes over while biking to class. I woke up in the ICU. My throat was dry, and my voice was hoarse. I assume that I had a tube down there at some point in time. I stayed awake in awe for much of my first night in the ICU. I remember a TV being on but me not watching it. The light from the screen helped make the first video that I made, though. And then I’m back. I’ve reached my destination and I know where I am. How I got there is another story. There are moments like that, and when my speech slurs, that I wonder and worry, am I just tired, or is the tumor back? Regardless, here I am. I’ve reached year 2. If I got to do it all over again, I want to say that I wish I wasn’t awake for the surgery. But, I’m not sure if that’s true. Those memories ground me, and I am undecided. Our own experiences are our best teachers, and I’m still learning how to process some of them. I’m headed in for my latest scan this afternoon. It makes sense to double check two years stable by making sure that the tumor (or rather lack thereof!) is still stable, right? This will be two years of an every-four-months scan protocol, and I am hoping to have the scans bumped back to every six months after today. As always, I’ll send the disc out to UCSF for Dr. B’s review.

I recorded videos every day for the first week, then every month, and stopped somewhere around 6 months after surgery. I recently went back to watch them, and didn’t remember taking any videos but the first one. If they’re fascinating to me, they might be to you too. Take a look:

Day 1:

Day 2: 

First College Mishap

I thought I was being bold by playing on the intramural flag football league here on campus, but I ended up being bloody. Last night I was part of a collision during the fourth play of my team’s first practice. With my medical luck, the collision was in the general vicinity of where I had brain surgery. The CT scan came back fine..phew. The PA said that the fist 12-24 hours could be a period of heightened seizure activity, but 24 hours have now passed so hopefully I’m in the clear! I slept in my community assistant’s room so that someone would be right there in case of an emergency (my suitemate and I have a bathroom + two walls separating us). It’s also reassuring that I have one of my every-four-month MRI scans in another week or two so my neurosurgeon can take a look at my precious noggin soon anyways.

Welp, five stitches later and the gash barely peaks out from my eyebrow. Phew! It looked A LOT worse before the stitches. I’ll get them out on Saturday and then my eyebrows will be back to their glorious form. An attending med student stopped by to take a look and I could tell he was prepping to do the stitches himself. I casually asked him why he went into medicine (he appeared to be in his mid-thirties and a bit past the typical med student’s prime), and he told me he used to be a family therapist on the East Coast and simply wanted a change. I quickly asked who would be doing the stitches and then requested for the PA to stitch me up instead. In my mind, PAs are doctors who just get paid less. Always speak up as a patient to ask for the best treatment possible! Patient advocacy at its finest.

I’ve been nauseous and with headache throughout the day, but things could be way worse! The headache associated with this collision is nothing compared to my usual headaches so that’s a relief. This headache is probably a 2 or 3/10 as opposed to my usual 6 or 7/10. I skipped my English class this morning and then went to my physics lecture/lab in the afternoon.

scar

I’d say that I maybe I should have joined a fantasy football league instead, but in all honesty I would have hated that! I love competition, especially in the sporting arena. We had our first game tonight and got mercied, but we’ll improve! We can only go up from here. I plan on bringing a white board to draw plays and shouting out quotes from Friday Night Lights during next week’s game.