Conversations that matter

This year I was fortunate enough to be asked to moderate a panel at Stanford Medicine X. The panel was called “Ah-Ha! moments in mental health and chronic disease management,” and I used the moment to shine a light on the similarities between patient communities regardless of age and diagnosis. The room for our panel was packed, and had standing room only. Each of the panelists – Mark Freeman, Danielle Edges, Ally Ferlito, and Sarah Kucharski – nailed their responses to questions and so clearly articulated the importance of mental health both in their own lives and in the lives of others within their patient communities.

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We saved time for a few questions at the end, and Christopher Snider pulled one from the live Twitter audience who was tuning in. We also had a physician remind the room how there is simply a lack of training related to patient mental health. His reminder didn’t present as an attack on the panel, but rather as words of empathy and a pleading apology to panelists after hearing how systems have failed and continue to fail some of them. As a follow up to his statement, I reminded everyone in the room how there were several Student Leadership Program attendees present for this session. Hopefully these students – future pharmacists, physicians, and researchers, took away a better understanding of the patient experience. Those attending the conference within the Student Leadership Program (SLP) blossomed, many receiving offers for funding their venture ideas, connecting with physicians for mentorship, and successfully networking amongst other guests. As an SLP Advisor, I felt like a proud parent! It was an honor to help coordinate the SLP program, and to improve upon accessibility efforts. It’s exciting to know that I was one of the youngest people there with very few undergraduate students, yet still tasked with the responsibility and respected for expertise, whether that be as a patient or student. And to think that two years ago I was apprehensive about applying to the program. This just shows that age, degrees, and professional qualifications cannot be substituted for life experience.

Just like last year, I met more people than I can count. But, out of everyone, Elizabeth Jameson stood out as the clear frontrunner as the person who I was supposed to meet. She was a part of the ePatient program as well, and I was immediately drawn to her. Liz was too. elizabethI think that we all had an instant connection. I found one of Elizabeth’s cards on the ground, and can swear that I have come across her artwork somewhere else before. While my admiration of her work certainly opened up the conversation, I believe that we were meant to meet for other reasons. You can see some of her pieces here. Elizabeth specializes in the intersection of art and science, and has secondary progressive Multiple Sclerosis. She and her artist assistant Catherine Monahon have created some incredible pieces over the years, all of which center around her own brain scans, similar to the ones that I have created in the past. I think that Elizabeth’s artwork speaks to the power of the patient voice, and also the reclaiming of one’s condition in a world so focused on fixing and medicating upon diagnosis. Her work is featured in permanent art collections at places like the National Institutes of Health, Stanford University, Yale University, and the Center for Brain Science at Harvard University, and I can only hope that one day we can collaborate on a piece of artwork together.

Friends and conversations had at 2015’s conference have translated into opportunities for 2016-2017, too. I’ll post that update later this month.

Disclosure: This post is one of several as a part of the Stanford Medicine X ePatient Scholar Program – Engagement Track, for which I receive financial support for travel, lodging, and registration fees for this conference. The views expressed in this post are my own.

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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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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.

Sophomore Year

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

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

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

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

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

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

Health > School

I had a seizure last night, and it actually scared me. My absent mindedness threw my brain for a loop.

My brain has been running a marathon over the past week studying for and taking two exams in combination with working on two papers. I definitely could have used more sleep, but I pushed myself. I wanted to stay up with friends chatting in the hallway. I wanted to wake up early to meet with a professor kind enough to reteach me a lesson. I gave myself the benefit of the brain doubt – that I would be ok with less sleep..that I could do it.

My schedule is set so that I can sleep in as late as 1pm if necessary on Fridays. I woke up much earlier yesterday and met with a professor who volunteered to do me a huge favor. I completely zoned out after taking an exam on Wednesday and missed his class. I remember the basics of what I did between the exam and when I realized I had missed the class, but I’m fairly certain that another mini-seizure took place that day. Instead of using yesterday to recharge, I used it to recover for lost time. Bad move.

I was tired in the morning. My right pinky and ring finger started to curl in the early afternoon. By dinner time I started to mix up sentence structure and slur a few words every couple of sentences. Yet, I told myself that I needed to work on a paper. I wanted to be productive. Three hours of staring at a computer screen and getting nothing but typing quotes later, my right middle finger dropped. I decided that typing with one hand when I barley even had anything to say wasn’t good for my paper or for my brain. I called it a night and walked back to my dorm from the library exhausted, and slightly confused. Per usual, my right cheek started to feel heavy, the use of my right hand and arm slowly faded away, and my right leg started to feel unbalanced. 

I was laying in bed when the sensation started to progress, but I didn’t want to try and sleep. I didn’t want to be alone. I wanted to get up and walk around – prove that I could do whatever I wanted. I was pissed at my body. I complained, mumbled, and groaned out of frustration while a friend comforted me. The heavy symptoms lasted for about an hour and a half until they had significantly faded. 

The scary part about yesterday’s seizure is that I chose to ignore that it was going to happen. I recognized the precursor symptoms building throughout the day and didn’t recognize them as warning signs. I convinced myself that I was just tired. I actively chose school over my health.

Never again.