Graduation & The Blog: 4 Years Later

When I started college four years ago, I was a shell of a person. My surgery had taken place less than a year prior, and I felt it. I really, really felt it. Fifteen minutes of a reading assignment required a nap from brain exhaustion. So did having lunch with friends in the noisy dining hall, a fishbowl of voices coming from every direction. The flashbacks to the awake portion of surgery were overwhelming, and I think that they were one of the hardest parts to push through.

While I found a way to camouflage my needs in the classroom using tan earplugs to muffle the extreme noise sensitivity and audio recording notebooks to help with memory retention, some professors lacked tact in assisting with my accommodations. The awkward instances of direct mention that the class notetaker was for me, while initially bothersome, eventually became a good segway for the ultimately necessary conversation about my health history with new friends.

I wanted people to know about my surgery. They needed to know it in order to understand me – and, to know why I wore ear plugs everywhere. Now, almost five years later, they still need to know, even if I don’t wear the earplugs anymore. The difference between when I started college and now is that back then, I thought my limits were deal breakers or opportunity enders in all the wrong ways. I didn’t think that I could go out with friends, or participate in anything outside of the academic arena because I wouldn’t have the energy or excitement levels to keep up with peers. Now, I realize that my limits are actually opportunities in themselves, and that my activities of daily living and otherwise just take a little bit more thought and extra care and thought than most others. The need to nap isn’t something to be embarrassed about. Oftentimes, people are actually jealous that I’ve arranged a schedule or figured out how to manage a life that fits in time for a nap now and again!

What strikes me the most as the biggest difference between four years ago and now is the ability to imagine a future. I didn’t make plans farther than a few hours in advance during my freshman year. I couldn’t even comprehend the following week. I illogically didn’t think that I would live to see that long. Flashbacks to surgery and fear of recurrence controlled everything I did. Selecting courses for the next semester seemed trivial for the first two years of college because I was that certain of a recurrence. The MRIs, switching seizure medications sophomore year, and figuring out what to do when seizing in class were so confusing and exhausting that planning for a life outside of medical mayhem just didn’t seem possible. Then, something just changed. My brain chilled out, the new meds started working, I seized less, and I hit my life, health, personal, and academic stride. The flashbacks and fear eased, and I was able to be a more typical college student – at least, in ways that made sense to me – and started to look ahead.

Two weeks ago I graduated the healthiest and happiest in my life.

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Image description: A college graduate wearing a maroon cap and gown with two sets of tassels and a medal. Their black shoes and pants are visible underneath and are holding a maroon diploma case while standing in front of a large, gold colored 2017 block letter statue with the number 20 stacked on top of the number 17.

Not only did I graduate, but I did so with a 3.99 GPA from the honors college, and was awarded the most outstanding thesis in my college. I had the opportunity to work in multiple child development labs, and be funded to conduct my own patient population research outside of the university. That research is now being utilized by that community’s lead national organization as well! Next up is my MSW with a health concentration out in Seattle starting in the fall.

I saw my neuro-oncologist here in Arizona yesterday, and she told me the wildest thing: she’s retiring to go and open up a breakfast food truck in rural Arkansas! She said that she has worked every day of her life since she was seventeen, and even though she could certainly work in the field longer (she’s just under sixty), she wants to go and do something more fulfilling in her personal life. This choice was inspired by an epiphany she had after organizing a family reunion out there last summer, and I couldn’t be happier for her. She’s a world-class name in the neuro oncology field, and she’s exchanging her scrub cap in for an apron and skillet. The stress melted right off of her face when she started talking about the truck (The Peck & Egg) named after what her mom used to call sunny side up eggs, for anyone wondering. She also cleared me for annual scans, and gave me names for referrals in Seattle.

When I first started this blog, I did so with the intent of creating something that future brain tumor patients entering college could look to and say, “You know what? This is doable. I can make this work.” in the context of college and chronic illness. I also used it as a way to track and update a large group of people about my health all at once, while simultaneously sharing what I had been up to and learned at conferences. Many students, parents, and fellow patient advocates have reached out to me after finding this blog, some of whom I’ve even had the privilege to meet up with in person.

I don’t know if I will continue this blog going forward, though. I struggle with this decision, as the brain tumor community has so few people and stories available as is. How I feel about this blog right now is similar to how I felt about the video updates I recorded for the first nine months or so after my surgery, eventually setting their access to private. Recording the videos as updates and documentation were what I needed, until they weren’t. Eventually they weren’t what I felt anyone else really needed to see unless it was a contextual teaching moment, in which case I shared direct links to specific videos, some of which I’ve linked within posts on here before.

You don’t grow up and out of a brain tumor, but, you may reach a life stage where this identity can take more of a back seat in your life. I am wondering if I am at that point right now. I do know that I will maintain #BTSM Chats and other related projects. The #BTSM community showed me that our medical experiences have meaning outside of ourselves, and I am continuing to explore what that meaning means for others and myself. These connections run so deep that I am even attending the wedding of one lovely chat participant at the end of July! With that being said, I am also now finally at a point to have multiple other parts of my life that portray meaning outside of this health identity. I’ve spent the past year exploring these parts more than I ever have before, and like I said, I’ve also had the happiest and healthiest year of my life. And that – that is something that can’t be ignored. It means something.

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.

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!

Even More MedX Access

Whenever I would hear or think about the Stanford Medicine X conference over the past couple of years, I would imagine the MedX piano music playing, the announcer saying my name, and me walking on stage. It was my “dream big” goal. Well, it just happened in real life.

21098991513_f5a4530e7c_o (2)As I took the stage, everything that I had envisioned over the past several years fell into place. I got to address hundreds of healthcare’s most impactful individuals, and spread a message that three years ago I could have never imagined I would give, and said words that I never would have imagined saying publically. My friends, being the cheerleaders that they are, hosted a viewing party on campus.

A spectacular video of me filmed this summer played right before I took the stage, and I couldn’t be happier with how it turned out.

Taking the stage was one of those moments that I will never forget. The lights hit, and I just started talking. I had a message to share, and I did it. I used to be the kid in class who started crying in front of everyone whenever I had to give a presentation, regardless of the topic. I once cried through a presentation of a poem about bunnies. I had to take a summer speech class for school in order to try and get over my fear of public speaking. From the feedback shared on Twitter, the audience needed to hear what I had to say at MedX much more than that class needed to hear about a poem about bunnies.

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Talking to and meeting people that I had connected with via Twitter over the past several years at the conference itself was absolutely fantastic. I got to catch up with old friends like Alicia Staley from #BCSM Chats whom I had met a few years prior but hadn’t seen since, and meet and check out Dana Lewis‘ from #HCSM Chats artificial pancreas up close and personal. Connecting with Tom and Audun from Symplur face-to-face was great as well, because their efforts have been instrumental in the upkeep of #BTSM Chats, and all Tweetchats, really, over the past couple of years. Most importantly, Liz and I were able to reunite for some #BTSM bonding, which is something that we rarely get to do. The other ePatients in attendance were all incredible, and each story was more awe-inspiring than the next. Never have I ever heard caregivers advocate so hard on behalf of their children than at this conference, and never have I been around so many other people with chronic illnesses like me, but at the same time who are still so different. Each ePatient was so well versed in their conditions, and I’ve never seen that in an entire a group of people before. Every single one of us knew how to fiercely advocate for ourselves, and it was fascinating to watch take place. This rarity is another breed of patients. We’re paving the way for future patients to come. The healthcare providers, researchers, and technologists who I had the privilege of speaking with exceeded my expectations of their understanding of patient-centered care, Drs. Roni Zeiger and David Rosenman in particular.

When I returned to Arizona, I had finals to prepare for. Oh right, college. I’m not one of those international scientists who was presenting at the conference too, am I? Nope. I still have a few degrees to go if I want to get on their level. Processing what had just happened was something that was going to have to wait another week or two. I came back, took my exams, and did a Tiger Woods victory dance that I had not caught the MedX bug that everyone else seems to have gotten. Then again, I am an honorary doctor after participating in the doctor-patient simulation lab, so I could have prescribed myself some antibiotics if I needed them, right?

My undergrad friends were amazed at this opportunity that I was afforded. They wanted to know how they could get involved. How might we make MedX more accessible to undergraduate college students? How might we turn a private event, something that requires funds outside of a college-student’s budget, into something that students could gain access to, in-person? What would that look like? Would it be through more pop-up events? Would it be through student-curated events on campus?

These students are highly motivated pre-med and pre-health students who, in their own words, say that attending MedX would be “the dream.” MedX was once “the dream” for me, but then it became my reality. I gained access as a patient. Sometimes having a brain tumor comes in handy, I suppose. These other students want access too, but they don’t have brain tumors, and they can’t apply to the ePatient program. Emily Kramer-Golinkoff said during a panel that many patients are literally dying while they wait for research to improve, her included. This is the reality. These students would do almost anything to be at this conference. They are energized and motivated to be a part of this conference that will hopefully be a catalyst to keep Emily alive. They want to be a part of this shift in medicine. They want to learn from patients, and they want access to this conference. They want a seat at the table. Watching online isn’t enough for these students anymore. They want to talk to the patients, and they want to talk to the rest of the speakers. Twitter can start conversations, but they say that it isn’t enough. They want to debate the ethics of research protocols, and they want to challenge how doctor-patient interactions are taking place. They want to bring up issues that they see aren’t being addressed by physicians they are interning and volunteering with, and their ideas are just as valuable as mine. Undergraduate students want to be involved, and they don’t want to have to wait until they can afford to attend the conference as future physicians. They don’t want to wait, because Cystic Fibrosis won’t wait, and because no other illness will wait, either. Some students might be under the legal drinking age, but they aren’t too young to know that they want to change healthcare. They might even be the ones to do it.

Disclosure: As a part of the Stanford Medicine X ePatient Scholar Program, I received financial support for travel, lodging, and registration fees for this conference. The views expressed in this post are my own.

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.

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.

Are you feeling better today?

Friends, professors, and coworkers have continued to be incredibly understanding of my temporary decrease in focus and energy levels. I missed several work meetings to nap the week before last, and everyone was completely ok with it. Those who weren’t aware of my brain tumor and seizure history at work were alarmed and skittish when I casually mentioned to them that I wasn’t making the meetings because I was trying a new medication and needed to rest. They then started asking me if I was feeling better the next day, the day after that, and the day after that, and eventually I just told them that I was feeling ok. Over the past seven or so years, I’ve come to learn you can’t expect those who haven’t dealt with a chronic condition before to understand that you don’t suddenly wake up the next day feeling better, as nice as that would be for them to understand. Regardless, all of my coworkers truly do care, and I’ve heard so many horrible stories from other college students with invisible illnesses about professors and coworkers treating them like absolute crap when they’re feeling sick or changing medications, so I truly am lucky to be in such considerate company. I’d also say that I am either gaining some of my energy back, or that I’m getting a little bit more used to the fatigue after the past three weeks of Zonegran, because this past week didn’t feel as bad as the first two.

The last two Zonegran side effects standing appear to be limited battery life and nausea. They pose the expected problems…

Problem: I still want to go back to sleep after just one class (way more than just a regular college student, I swear)

Solution: drink a chai tea with two shots of espresso as just the right combination to stay alert without getting jittery

Problem: getting everything I need to get done without falling asleep

Solution: plan the entire day out ahead of time, literally hour by hour, in order to spread energy levels accordingly, and allot time for some tasks to take place the next day if needed

Problem: the preschoolers I work with on campus on Tuesday and Thursday afternoons use up half of the day’s energy

Solution: hang out with the kids sitting in the sandbox instead of the cops and robbers lovers when it’s time to play outside

Problem: still relatively nauseous 24/7

Solution: always have ginger tea in my backpack so that I can drink some wherever I am on/off campus, whenever

Problem: decreased appetite re: nausea + in general

Solution: still working on it (/also sad because I love eating everything, all of the time). Your suggestions are welcomed.

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Fun fact: it was brought to my attention this week that I was so out of it when I scheduled my six-week check-in with Dr. Z that I scheduled it for the morning of my 20th birthday at the end of the month. Cool.

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?

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: