I wrote my own obituary

I wrote my own obituary this weekend. I wrote my own obituary as an assignment for my Death and Dying Across Cultural Perspectives class.

Other brain tumor survivors have had this assignment in their college classes before and turned to me for support. I had always assured them that they could do it, and that it would be fine. That it was just an assignment, and that it wasn’t real. I didn’t realize how hard this would be to complete. How raw and real it would feel.

When the assignment was given, I immediately thought about death by brain tumor. I knew that I could write the obituary in one of three ways: die young from tumor recurrence, die middle aged from tumor recurrence, or die from random other health condition across the lifespan/old age. All three options ended in death by some sort of health condition, whether preexisting or not, drawn out or quick and easy, they still felt terrifying. I like living in the known and for certain, and the unknown possibility of dying from a tumor recurrence is absolutely terrifying to me.

What I think was different about my obituary assignment than my peers’ is that this was the second obituary that I had written for myself. I wrote my first obituary in September of 2012. It was in the form of a video, and I gave a friend the password information to access it if needed. She did not need to access the video; I survived my brain surgery. The video was never viewed by anyone but myself.

There is a rocking chair that I’ve thought about as a source of comfort for the past seven or so years now. It’s a rocking chair that I think about when I have big decision to make regarding my identity. I ask myself, who do I see in that rocking chair, and who is sitting next to me? The answer is always so clear. The influence of others and their impact versus my authenticity are never more apparent than when I envision my true self. And so, I passed away comfortably in that rocking chair with a cup of coffee next to me. You decide the age and cause of death.

Semester 5 + Neuro Update

It has been a few months since I’ve posted an update. For those of you who read this, I’ve been so busy with school, scholarship applications, teaching, my thesis proposal, etc. that I haven’t had time. The first semester of my junior year wrapped up with a 4.1, resulting in a 3.96 overall cumulative GPA. I have been looking at grad schools and am now preparing for the GRE as well. It felt like the semester really flew by, and there were no real health mishaps, thankfully, too. I taught and TAed for several classes again, and can only hope that at the very least, my freshmen learned proper email etiquette.

My thesis has been IRB approved, and I interview my first family next month! Only two of my classes are in-person this semester so that I have enough time and flexibility to meet with families, and the rest are online. It’s strange not getting up and going to class every day, and going to my favorite coffee shop (shout out to The Blend), to do online coursework instead.

I had my latest scan in the end of December and had it reviewed in January – still stable and in the clear. I’ll go back in another six months. There was a bit of a snafu with bringing the CDs back to Arizona from Nevada where the scan took place, as the imaging center copied an old scan on the disc that I took back instead of the most recent one. So, I spent the entire appointment with my neuro onc comparing the same MRI to itself before my doctor realized the dates of the scans were the same. The correct disc was then sent to Arizona, and my doctor graciously reviewed the scan and called to talk to me over the phone about what she saw. Or rather, didn’t see!

I’ve become more selective in the projects that I am taking on, and it feels good to be empowered enough to say no to things that I simply don’t have the energy or cannot dedicate the proper amount of time to, and yes to the things that I feel passionate about in 2015 and 2016. I have a few announcements coming up over the course of the next month or so, so stay tuned.

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.

Gearing Up

In two weeks, I’ll be at Stanford University for the Health Care Innovation Summit, immediately followed by Stanford Medicine X.

My goals here are to gain as much knowledge from as many different attendees as possible. I want it all. I’ll be live tweeting throughout the entire conference in order to share what I’m learning with the rest of the online advocacy community. I’ll be especially concerned with psychosocial issues and environmental psychology between individuals and their physical settings. I want to know what physicians, researchers, and technologists have to say about patients and their medical environments, ie. the realms of control, privacy and social interaction, personal space, and comfort and safety. When I say control, I really mean the lack of control that patients have in a typical medical context. What does patient disempowerment mean, and how can we modify that experience to improve it?

What are patients and health care teams doing to combat loneliness, helplessness, and boredom in the hospital? Those are all things that I experienced during my stays in the hospital, and those are all challenges that I will work to address as a Child Life Specialist in the future. I’m curious to see how suggestions for adult patients might transfer over into the pediatric realm, because these are problems for chronic patients of all ages. I have the patient perspective, but what do physicians see as cooperative care? What do they see as the best involvement of nonmedical participants? Clearly our visions aren’t the same, or else we wouldn’t still be on different pages. So what are their ideas, and how can we turn us vs. them into a “we”?

I’ll be giving my talk about self-identity, gender, and their impact on whole-person health as part of the Medicine X core Misconceptions and Misperceptions theme at 4:10pm PST on September 25th. I encourage you all to use the hashtag #MedXgender when tweeting about my talk leading up to, during, and afterwards to keep everyone in the loop of the same conversation. My talk will be directly followed by the Misconceptions and Misperceptions panel, which will run for an hour. I am very excited to be joined by four fascinating individuals as other participants, as well as an experienced moderator. I’ve always found these panels to be interesting in the previous years that I’ve followed Med X, as they give panel participants a forum to discuss experiences, share opinions, and to collaborate in real-time in front of an audience. These panels are also where I’ve seen Twitter light up the most during sessions, inciting some of the most meaningful dialogue online, sometimes even facilitating Oprah “ah-ha” moments for those tuning in from home. And, who doesn’t love Oprah?

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.

Collective Healing

This was my fourth year at Camp Mak-A-Dream with The Children’s Brain Tumor Foundation, and my second as a volunteer. After attending as a camper for two years and finding my community, I knew that coming back and volunteering during that same session, the teenage brain tumor week known as the Heads Up Conference, was what I needed to do in order to help other, younger survivors do the same. Every year when I go back, I see a little bit of myself in younger campers. In the first-time campers, I usually see a hesitancy to talk about how their diagnosis has affected them on a deeper level. Whether they realize it yet or not, telling the same diagnosis and treatment story over and over again is so much easier than actually talking about how the diagnosis has affected them as a person. It’s common for people to ask what happened in terms of how/when you were diagnosed, but not what happened after that. Camp is the place where you can start to explore the “after that” part.

I arrived last Friday in the evening on a flight with two campers, while the rest of the campers and volunteers arrived earlier that afternoon. I opened the door to the upper lodge where we eat all of our meals, and was blasted with hugs for a full ten minutes. It was like being wrapped up in blankets of love over, and over, and over again. Pure bliss. I had met many of the campers during my first year at camp four years ago, and it was so incredible to see them and hear about their accomplishments since then. One wrote a cookbook, another volunteers at recreation therapy center every week, two have full rides for their first year of college, and another was voted prom queen this past year!

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This year I volunteered as part of program staff and helped out wherever needed. If the sessions were our usual camp activities like the high ropes course, zip line, art barn, etc. then I helped make sure than they ran smoothly. If we had expert members come in from the community to run activities such as a poetry workshop or meditation session, I got to sit in on them and observe. Those moments were special because I had a chance to truly take a step back and analyze what campers were communicating with their behavior and language. Every word that comes out of our mouths is an indicator of our state of mind and self-perception, and confidence is always a big focus and something that we want to boost for everyone at camp. During the poetry workshop, some campers chose to write about their medical experiences, and others did not. I really appreciated those who did, and thought that those poems were extremely powerful. To build off of that workshop, another program volunteer had the fantastic idea to create the opportunity for a music therapy workshop where campers could set the poems that they wrote to music. We brought out the drums, shakers, and pulled up an online music library to give campers a variety of options to work with. Providing creative outlets like this is so important, because de-stressors can be so easily forgotten about in the midst of a storm.

Friendship bracelets are a big part of camp. Whenever we’re riding a bus for a camp fieldtrip, or just sitting around waiting for an activity to start, you can guarantee that there’s string and bracelet making going on nearby. One afternoon I spotted of the bubbliest campers just sitting there looking a bit defeated, when there was plenty of string on the table right in front of her. I asked her why she wasn’t making a bracelet, and she replied that she had never made one before because she only had one “good hand.” A lot of our campers have some sort of right or left sided weakness, but unlike me, theirs doesn’t just go away after a seizure ends because theirs is permanent or semi-permanent from their surgeries. So, we made a bracelet together. She held the main string, and I weaved the second one around hers. And afterwards, she had officially made her first camp bracelet. We worked together again as a team when we volunteered at a food bank and labeled packaging bags and had to remove stickers from a sheet of paper as well. I get to resume all of the activities that I usually do at most up to three days after a seizure, but at camp, I’m reminded that some survivors have to adapt to their new normal full time, and don’t have the privilege that I do to regain bilateral function.

I noticed more of a focus on mental health this year than ever before, and I was glad to see it. Brain tumor patients often exhibit depression and anxiety, and mental health is so stigmatized that it only exacerbates the problem. Older campers really stepped up in the group discussions and made sure that younger campers knew that what they were feeling, whether they wanted to talk about it or not, was normal, and that they were there for them. One camper even put his phone number in each and every camper’s warm fuzzy bag (a name-labeled bag where you put nice notes for someone that leave them feeling “warm and fuzzy” after reading them) to call if they ever need to talk.

From caring about fashion to now valuing family, having to give up sports for medical scans, going from caring about popularity to caring about the well being of others, and thinking about a career as a fashion designer to switching over to one in the medical field because of their therapist and treatments, campers really identified a shift in their priorities post-diagnosis this week. Their self-awareness and sense of self at a young age is something stronger than their peers. I am proud to have reunited with and have had the opportunity to interact with so many new, incredible individuals. This week they were told that they are worthy, that they are unique, and that they are good enough regardless of their disabilities. And they are.

Camp is where my before and after surgery worlds collide. It was at camp three years ago that I had my conference call with Dr. B in San Francisco and with my parents in Michigan while I was in Montana to plan my surgery. That’s just how the timing worked out. Whenever I visit, talk about, or even think about camp, I find it hard to believe that that call was made there. How could I possibly have scheduled my brain surgery, something so stressful, so absolutely terrifying, at a place so peaceful and so calming to me? But it happened. And now, three years later, it seems like a far off dream and hardly even a reality. I had a meeting in the same room that I made the call in at camp this week. It didn’t feel that strange at the time, but thinking back on it now, I wish that I had asked for it to be moved to another room so as to avoid bringing up those old memories.

Camp is a space for collective healing because of our collective trauma. Visual and hearing impairments, physical weakness, processing delays, and difficulties with impulse control are primary side effects from our brain tumors. And because of those, we are automatically othered. Bullying, depression, anxiety, and social isolation are secondary side effects that may have an even stronger impact than the initial disability. At camp, the narrative changes. For one week, we’re all on the same page.

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Eat. Sleep. Volunteer. Repeat.

Honestly, I love hospitals. They’re clean, so you’re less likely to get a cold than at other jobs. They’re safe, because you need a badge to swipe in everywhere. If there’s any type of emergency, it’s handled quickly.

At least, that’s my logic, and has been what I have witnessed at the hospital that I am volunteering at this summer. I’ve asked my friends from camp how they feel about the hospital, and no one else seems to feel the same way. Their responses of fear, discomfort, and aversion towards hospitals all make sense given our traumatic medical histories. And yet, I am still drawn towards hospitals. I can’t wait to work in one.

I have been so incredibly busy at the hospital over the past month and a half. I wake up, go there, come home, nap, do some homework, and go to bed. While it has been exhausting, I absolutely love it there. I’d say that 75% of the time during my usual days and life I’m pretty tired (seizure meds/it seems like the mental strain of writing and researching has caused more fatigue recently). It’s easy to see. But at the hospital, 75% of the time in fully energized, and that’s easy to see! I go to the hospital to volunteer five days a week and spend the other two days catching up on sleep/doing homework for the online courses that I have this summer.

While my apartment is only about a 10 minute drive away from the hospital, my bus commute is 45 minutes. The time passes by pretty once you hop on, though, and there’s always interesting people watching. A few people have struck up conversations with me about a cough or bunion (gross) that they have, and I soon realized that the scrubs that I wear have led people to believe that I am some sort of a nurse or doctor with more medical knowledge than I actually have. I’ve just politely listened and nodded, and told them that they should probably call their doctor.

Monday – Wednesday I am running around on five different floors, but on Fridays and Sundays I am just on one set floor. I get to work on all five active floors this summer, which exposes me to just about every single type of condition and illness out there. You’d be surprised by the number of young kids who get cellulitis. My favorite floor by far is the oncology floor, and that’s because of the relationships that I get to build with patients and their families when they’re admitted for longer periods of time. I suppose that’s a bit selfish of me. It has been tough for me not to disclose my personal connection to, and the bond that I feel between brain tumor patients and myself every time I work with one and their families, but, professional boundaries exist for a reason.

Almost all of the floors have a playroom for the younger kids, which allows them to stay in some sort of state of normalcy for their age and development if they’re not on any precautions, and are allowed to leave their rooms. These rooms have age appropriate toys for kids from infants all the way up through elementary age with just about anything you can imagine. Arts and crafts, pretend kitchen play supplies, cars, castles, books, puzzles, board games, you name it, it’s there. The face of a patient when they get to go in the playroom for the first time is Christmas morning meets first day of school because it can be so overwhelming with all of the different, stimulating options, especially when they are used to being stuck in such a plain room. Two of the floors have teen rooms as well, which I was happily surprised to find out about. I’ve heard about a slew of hospitals developing adolescent/young adult cancer programs, but I’ve never really seen anything in action. These rooms would be the closest things to that, with video games, iPads, Kindles, a foosball table, and a couch for teenagers to hang out on with other teen patients when they want to leave their room and just relax. There’s a ton of technology in there, and definitely didn’t come cheap. It’s really nice!

Monday – Wednesday when I’m on all five floors I volunteer specifically with the schoolroom. I typically work with either our patients who are admitted for longer periods of time, or our outpatient kids who come in for treatment during the week on a regular basis. Depending on whether the child is inpatient or outpatient, we work in the classroom, down in the outpatient treatment center while they’re receiving their intravenous treatment for several hours, or bedside up on one of the floors where they’re admitted. We might work on anything from testing for kindergarten readiness through identifying shapes and colors via an iPad app, to developing alphabet and handwriting skills, all the way up to geometry lessons online. Other days, we might work on reading by reading aloud together, or simply have some fun by playing board games. Everything is strategic, whether the kids realize it or not. If I know a child could use some help with their fine motor skills, then I might bring in the board game Jenga to play because it requires the planning skills to select a particular wooden block to remove, but more importantly, you need to grasp and remove that block carefully with precision.

On Fridays and Sundays when I am just on one floor and with Child Life specifically, I am either bedside with kids, or in the playroom. When I’m with Child Life, I am able to offer parents the chance to take a break, and take some time for themselves. They can go to the cafeteria, to the quiet room to rest, or even go home for a few hours and know that someone will be there with their child. Parents typically resist and say that they are fine at first, but after I spend some time playing with their child while they are in the room, and they realize that I am a safe person to entrust their child with, something changes in them. A wave of relief washes over them as parents finally give in to themselves and allow for self-care. I can’t imagine what it is like to have a child in the hospital, especially for weeks or months at a time, but knowing that I am able to help parents take a break and take some time away from being on-call 24/7 while I do something that I love to do, play with kids, is an incredible feeling.

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.

Well that was awkward

The office called to reschedule the appointment for April 28th instead of the 29th, so I didn’t have to go to the doctor on my birthday after all!

Dr. Z was surprised to hear about the intensity to which some of my symptoms had effected. But, now that I’m pretty much back to my baseline cognitive state and energy level, we were able to reflect. We decided that I would call her the next time I have a seizure and that then I will very likely add another 100mg of Zonegran. I have the script ready to fill, it’s just a matter of if I want to and feel ready to do it. I’ll be busy volunteering at a children’s hospital this entire summer, and I don’t want to be all fogged up again. So, then we circle back to the ‘Are you putting your health or life first?’ debate, the ‘How is your quality of life, and how do you define quality of life?’ question. Those are conversations to have in person, not via a blog post.

I’ve actually had a seizure since I saw Dr. Z the week before last, but I know that it was directly caused by the lack of sleep and stress that came along with final exam week. Because the seizure was not triggered by an unknown cause, I didn’t call Dr. Z. I will call her and add more Zonegran when I feel like a seizure really goes out of control, or that they are truly unmanageable and increasing. The Klonopin wafers knock the seizures out within minutes, and it has been 3 weeks since my last seizure, and I’m feeling pretty content, which is nice. Part of being an empowered patient is taking responsibility for life circumstances and life events that are both within and out of my control. I could have chose to go to bed earlier when I was studying, I suppose that I could have petitioned to take my exam later in the day instead of in the early morning, etc.

I remain a huge fan of Dr. Z. She listens intently, and you can see the gears churning in her head as she cross-referencing her neurological knowledge with her personal, familial history of epilepsy prior to answering questions. I had a question that she wasn’t sure of the answer to, so she checked with a colleague and called me back with an answer within two hours of the appointment. There’s a second doctor, Dr. D, who has come in for a few minutes at the end of my two appointments with Dr. Z just to basically summarize and verify everything that I talked about with Dr. Z. Dr. D is so incredibly socially awkward. The interactions are almost painful to have. I’m not sure if he has some sort of social impairment, but his [perceived] level of uncomfortableness and social anxiety when speaking with patients is something that I truly believe is holding him back from connecting with and building relationships with his patients. I’m cringing now even just thinking back on the two interactions now. I might write another blog post about my thoughts on doctors and social skills/interactions more at length at a later point in time. Medical knowledge matters, but so do social skills and knowing how to navigate social spheres, even patient and waiting rooms.

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.

bdday meme

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.