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.


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.


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.


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.

MedX Phoenix Pop Up

It happened. The first ever Stanford Medicine X Phoenix Pop Up took place on April 16th, 2016. SHOW TIME graphic!We were lucky enough to have Executive Board Member Gilles Frydman travel to join us and deliver the opening remarks, as well as document all that took place through his camera lens.

While we weren’t able to share a link to the livestream due to technical difficulties, we had some recording help from ARKHumanity, and two of the talks were recorded and are linked to later in this post below.

We were fortunate enough to have incredible exhibitors from around the valley join us, each of which brought displays that attendees were able to interact with. These displays not only started conversations, but allowed for attendees to ask ourselves and each other questions prior to the evening’s talks like: What if this were me? What if this were my child? Do I need this service?Screen Shot 2016-05-03 at 12.21.35 AM

The program kicked off with Danielle Edges sharing her family’s story that answered those very questions as she told us about her daughter’s reality of navigating life with Heterotaxy Syndrome. Her words and photos shook us all to the core as she read her letter titled, “Dear Heterotaxy.”

Pat Pataranutaporn shared his reason for being a part of the ARKHumanity team, a project derived from Hack4Humanity that bridges the gap between people in crisis and mental health professionals. ARKHumanity utilizes algorithms and key word filtering to listen for suicidal messages within public data on Twitter, and triages to create an outreach interface. Prior to the creation of ARKHumanity, a call for help on social media might go unanswered. Now, that call for help will be answered and can utilize proactive outreach to prevent suicide. They recently collaborated with Arizona State University and Teen Lifeline to conduct research that yielded the findings of 2.6 million tweets that matched suicidal keywords in two weeks time. Wow.

Omron Blauo gave us insight into the work he’s doing in Ghana with Telescrypts, which seeks to bridge health access gaps in remote, low resource communities by providing healthcare workers with data storage tools that innovate their current examination system. In order to do this, Blauo and his team created a durable and long lasting wearable device that records pulse, heart rate, temperature, respirations, and oxygen saturations all of which synch to an app and secure platform on a mobile device, collecting data stored in a cloud without needing wifi. This use of telemedicine pays close attention to cultural and environmental needs, something that wearable devices related to healthcare often do not.

Richard Filley spoke on the topics of doctors, drones and disruption in healthcare. He made connections between aviation and healthcare, and brought up barriers to disruption like regulation from the FAA and the FDA – the ideas of those from outside the profession. These barriers and ideas ultimately got the audience to ask ourselves: When is healthcare’s drone going to land?

Stacey Lihn delivered the keynote and shared her experience as a mom and advocate, as well as founding and being the President of Sisters by Heart, a volunteer organization that provides support, education, and empowerment to families affected by Hypoplastic Left Heart Syndrome from initial diagnosis and beyond by connecting moms across the country. Lihn taught us how moms are literally and figuratively sitting at the table to improve patient outcomes. She also reminded us that not all care centers are created equal, and that if we want to see improvements in patient care, oftentimes we, the patients and caregivers, are the ones who need to do something to make that change. Because of Lihn’s work as the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) Parent Lead, NPC-QIC Transparency Workgroup Co-Lead, and NPC-QIC Mortality Workgroup Member, Sisters by Heart is partnered with NPC-QIC to decrease mortality and improve quality of life for infants with single ventricle congenital heart disease and their families. Lihn also serves as a Public Member of the American Board of Pediatrics Foundation, and this level of parent and caregiver engagement is not to be taken lightly.

The closing panel, which consisted of Stacey Lihn, Richard Filley, and Ram Polur had varying perspective that included the caregiver, entrepreneur, and technologist viewpoints. Asking them questions as the moderator was interesting because each of their experiences led to clear expectations for healthcare settings and interactions amongst patients and providers related to trust, respect, and communication.

My personal highlight of the night was getting to learn about the Cardiac 3D Print Lab at the Phoenix Children’s Hospital (PCH). Each heart takes between 3 hours (small) and 5 hours (big) to print. The Cardiac 3D Print Lab teams up with a group called Heart Effect for Screen Shot 2016-05-02 at 7.58.44 PMeducation and emotional support purposes with families after the models have been printed to prepare them for their upcoming surgeries. They also told me how the 3D print lab over at PCH is working with Child Life and the brain tumor patients to print replicas of their brain tumors so that the kids can work through their emotions during treatment. Some kids throw their tumors off of the hospital roof, others smash it with a hammer, and some, similar to our MedX friend Steven Keating, keep theirs!

As soon as the event was over attendees started asking when the next pop up was taking place, if it was going to become an annual event, etc. This event would not have been possible without the help of Danielle on the ground, and the MedX team in Palo Alto. I knew that it was possible to bring a taste of MedX to local communities through having watched livestreams of previous MedX pop ups, but now I have a whole new appreciation for the work that goes into it. If you enjoyed this pop up, you haven’t seen anything yet. Nothing can truly prepare you for the conference itself. For those of you who had your first MedX exposure through this event..I know you want more. See you in September!

Stanford Medicine X 2015 ePatient Delegate – that’s me

I am proud to announce that I have been named a Stanford Medicine X 2015 ePatient Delegate! Stanford Medicine X is a patient-centered conference that explores how emerging technologies will advance the practice of medicine, improve health, and empower patients to be active participants in their own care. The Medicine X community unites all healthcare stakeholders – patients, providers, researchers, and technologists – in a year-round program of online events and classes at Stanford University, culminating in an annual conference at the Stanford University School of Medicine in the Fall. I am eager to be a part of this program because I want there to be more neurological representation, specifically brain tumors and epilepsy, in this emerging healthcare conversation and arena.

Not only is this a tremendous honor, but it is also an example of how advocating for, and creating your own health community can open incredible doors. When I started blogging and tweeting about my health experiences a few years ago, I didn’t envision #BTSM (brain tumor social media) Chats. When Liz and I created #BTSM Chats 2.5 years ago, I knew it would have an impact on an individual level, at least for the two of us, and hopefully for a few others. But now, we have the opportunity to reach people on a global level more than ever before.

There are three tracks for Medicine X ePatient Scholars, each of them with their brief and respective descriptions below.

Engagement & Producer Track: Share with others knowledge gained at Medicine X, and produce original content via social media while at the conference and after.

Presenter Track: Use your patient voice to help share and spread knowledge to educate and inspire others by speaking at the conference.

Design Track: Work with a designer from IDEO to brainstorm and create a solution to a self-identified problem using the collective knowledge and creativity of a team of fellow conference attendees in one day prior to the 3 day conference.

I thought that the safest bet for me to apply to would be the Engagement & Producer Track given my history with social media. I’m on my phone and or laptop all of the time, and my job revolves around social media marketing. It would have made the most sense for me to apply to the Engagement & Producer Track. But, I decided to stretch a little. There are countless sayings about getting out of your comfort zone in order to succeed, so I did. And, the best way for Liz and I to get our ideas across about #BTSM and brain tumors in general together would be to apply to the Presenter Track, together. Unfortunately, Liz was not accepted as a scholar this time around. It is now my responsibility to bring the voices of the brain tumor community with me. I am not the ePatient Delegate, we all are. I hope to gather any type of information that I can throughout the coming year that will answer questions, create solutions, and provide opportunities for community engagement.

Public speaking used to be my biggest fear. There was a presentation I gave for an English class my freshman year of high school where I stood in the front of the room, bawled, and pressed the spacebar to move from one PowerPoint slide to the next for a solid ten minutes. There was a mandatory speech class students in my high school had to take the following year, and I dreaded it. I imagined myself crying during class, and then thrown back into the halls to head to the next class in tears. I was so scared that I found a way to take the class in the summer instead. The class was much smaller, and, the teacher was a cancer survivor. We bonded over advocacy, and I somehow made it through the entire course without crying once. I was amazed, and my friends were too. I definitely felt more comfortable sharing and speaking in her presence with the knowledge that she too had memorized the wallpaper of waiting rooms. I haven’t cried while public speaking in four or five years now, but public speaking does still make me nervous, as it does for most people. I delivered an Ignite talk at ASU last semester, and I was calm, cool, and collected throughout.

When I mentioned this incredible opportunity to my high school friends, the first text message response I received was (direct quote): “AFTER THE WHOLE FRESHMAN ENGLISH AND SUMMER SPEECH CLASS FIASCO? *cries of proud*”

I’ve come a long way since then!

I started to set “long term” goals last April. Applying to Medicine X was one of them. Up until then I was having a hard time allowing myself to think two months in advance, because I was so afraid of what the next MRI would show. Following through with this goal, and snagging an application victory, really speaks to the progress and adjustments that I’ve made. I am starting worry less about what my brain tissue is doing, and as I look into the future, I’m seeing new goals sprout up. Accepting this commitment means that I am actively shifting my lens from solely focusing on my experiences, to focusing on what my experiences means in the context of a bigger picture: the future of participatory medicine.

The Next Step

Stanford Medicine X, otherwise known as MedX, has been on my mind for almost three years now.

The conference unites patients, providers, technologists, and researchers for three jam-packed days of patient advocacy heaven. It’s my understanding that MedX in itself is actually a year-round program of online events and classes at Stanford University that culminate in an annual conference at the Stanford University School of Medicine. I made a reference to MedX last spring in a previous blog post.

I’ve followed the conference via video stream for the past two years, but never applied until this year because I didn’t think that I had the credentials to attend or present. Then, I saw another college student on stage. The student was a blogger and tweeter named Emily, aka Chronic Curve, who has several rare, autoinflammatory diseases. I immediately direct messaged her on Twitter to ask about her experience at MedX once the conference was over. There was only so much that can be discussed via 140 character messaging, and we set up a Google Hangout to talk more. We exchanged stories, and the more we talked, the more I ended up regretting not applying to MedX sooner.

The application consisted of eight, 1,000 character response questions. I may or may not have read the character count as a word count and spent a month crafting eight nearly 1,000 word responses, tried to submit them, and then was horrified to find that I was mistaken. I think that those responses, while they ended up having to be condensed and cut up into a quarter of their original size, were some of the best things I’ve ever written. I’m used to being the “sick person” doing the basic explaining to “healthy people,” and am not usually challenged by other members of health communities to elaborate further. All of that writing and mental strain sent me into a 14-hour sleep stupor to recover when it was all said and done.

There has always been massive arthritis and diabetes representation amongst patient attendees in the past, but I didn’t see any epilepsy or brain tumor representation. Thus, Liz and I applied to present about those two facets of our lives, and how our personal experiences with the two spawned #BTSM chats. We want to talk about building a platform of support and advocacy in the brain tumor community, and how to make a difference in this community where half of us will die three years after diagnosis. Attending and speaking about #BTSM, epilepsy, and brain tumors in general at this event alongside Liz feels like the next step. It just makes sense.

A Dignified Death

I came across an article about this woman earlier today:

My initial response after watching that video was that that could have been me. This could be me. I respect her. I worry that I could be her one day. Regardless, I have a tremendous amount of respect for this woman for living and dying on her own terms. We had the same diagnosis, a grade II Astrocytoma. But I’m still here and am stable two years later. She had 10 weeks of stability and then her tumor transformed into Glioblastoma. When I hear stories like this and I am shocked. Part of me thinks about this possibly eventual diagnosis for myself, and the other part of me wants to think that now that the tumor has been removed I’m in the clear for the rest of my life (tell that to my seizure meds and MRI machines..)

What would you do if you were her? Would you opt for a dignified death such as this, or would you choose another surgery, chemo, radiation, and or a clinical trial? My response when I asked myself that question was to do what this woman was doing. But then, I changed my mind. So I’m not sure. Take some time and reflect about your life today please. What are you grateful for? Do you feel fulfilled with your life? I know that I do.

Update: Not yet.

Update Part II: Brittany Maynard took the prescribed medication to end her life comfortably, and at home with her family, on November 3rd, 2014. The right-to-death debate conversation continues.

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: 

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.

August #BTSM Chat – Survivorship Plans

August’s #BTSM Chat talked about making a map for survivorship mode: a guide to the what’s next and how to’s of life after treatment. As far as Liz and I could tell through our research, there is no standardized survivorship plan for brain tumor patients. The chat for the month of August also announced some new and exciting things for #BTSM – we created a #BTSM Twitter chat account, and a #BTSM Community website is in the works. Keep checking the site for updates!

T1: Do you consider yourself or your friend/family member a survivor at this point?

  • How do you define survivor?

T2: How many of you talked with your doctor to determine a survivorship plan after diagnosis/treatment?

  • Did you know that there’s such a thing as a SURVIVORSHIP PLAN?
  • What should a brain tumor survivorship plan include?

T3: What kind of medical related things do you want survivors to know to follow up with after treatment has ended?

  • What are some non-medical related things that you think brain tumor survivors need TO DO after treatment ends?

T4 (bonus round): What ideas can you contribute to a survivorship plan for your specific tumor type/locations? 

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Two resources for creating generalized survivorship plans that Liz and I came across were The Livestrong Care Plan and Journey Forward. Let us know what you have done to create your survivorship plan, and tune in on September 7th for the next #BTSM chat.

Camp Make Your Heart Swell

I’ve spent the past three-ish weeks at Camp Mak-A-Dream, a medically supervised, cost-free camp in Montana for children, young adults, and families affected by brain tumors and cancer. My experience at Camp Mak-A-Dream (pronounced camp make a dream) was much different this year than last because I attended the brain tumor specific week for those ages 18-35 instead of 18 and under. I had anticipated the majority of attendees to be like me, attending college, starting to adapt to “the real world” post-treatment, and looking ahead into the future about long-term careers and goals. Some attendees were, but others were still developing social skills and hitting marks that they had missed along the way while going through treatment at younger ages. I was surprised to find that there were so many more widespread cognitive delays and intellectual differences between this group of participants than the teen group that I had previously attended. Regardless of where each of us was in our lives, we all expanded our camp families. I spent much of my time during the week as a camper documenting other participant experiences by creating “Humans of CMAD” modeled after Humans of New York which was a blast.

I spent part of the weekend between camp sessions out in the woods camping with the full-time staff, and had a blast. This was my first time camping at all, much less in Montana, and it was incredible. The hikes that we went on and views that we had were incredible. The rest of my time between my weeks as a camper and volunteer was spent helping out at RATPOD (Ride Around the Pioneers In One Day), which is camp’s biggest fundraiser of the year. The event raised over $400,000!!! 650 cyclers rode a 130-mile route to benefit campers even though it was freezing cold outside and it rained for most of the morning. Many of the cyclers stuck around afterwards to listen to four campers talk about what camp means to them. I was one of the campers to speak, and this is what I said:

“This camp changed my life. It was the first place where I met other people my age with my exact same obstacles, fears, and experiences. When I’m at camp I get to meet other people my age who too have experienced seizures and memory loss. There, relearning how to walk, talk, and rest from fatigue is the norm. We’re all on the same page. There are some things that you just can’t talk about with most people because they just don’t get it. Most people don’t know what it feels like to have awake brain surgery, or to sign an advanced directive like my friends from camp and I do. It’s hard to describe what camp is like because it’s so magical, and words can’t do the experience justice, but I’ll try.

Camp Mak-A-Dream is a place that reminds us that it’s never too late to become who we thought that we might have been before we got sick. Outside of camp we’re told that we’re different, and asked why we can’t just go back to the way things were before our treatment. We’re still struggling to find our new normal whether that’s five months or five+ years later. We aren’t the same people as we were before, which is very difficult for many people to understand. Our illnesses aren’t just a dot on our lives’ timelines because they continue to affect us psychosocially and cognitively even after treatment ends. The friends that we make at camp know what that feels like. Camp brings people together from across the country, and allows the noise of school, work, and families to be put on hold for a week. We are provided with the opportunity to open up about how treatment has affected our every day lives without judgment. We don’t have to explain why we take the medication that we do, because chances are that half of the rest of camp is taking it too! Campers don’t have to explain their leg braces, prosthetics, visual, or hearing impairments, because we all have a bit of at least one of them going on.

A side effect of camp is friendship. We find ways to meet up during the year all over the country. We text and Skype with each other reminiscing about our time spent at camp. As unbelievable as it sounds, some campers don’t have any other friends outside of the ones they camp. Camp Mak-A-Dream transcends all differences amongst people. It’s sometimes even joked about as camp make a baby because of the couples that it produces. Campers are able to find friends and partners who understand their same medical histories, something that is so incredibly difficult to do elsewhere. The amount of support that camp make a dream provides for its campers is absolutely unparalleled. Hearing about, and attending this camp is one of the best things that ever happened for me.”

Once the Teen Week session commenced I helped out in the kitchen on the Dream Team for most of the day, and elsewhere in between meals. I had a fantastic time bonding with the chef and our other volunteer. We spent just as much time joking and telling stories as we did preparing meals, and I was happily surprised at the amount of food that is actually made fresh given the mass quantity demanded. Most of the volunteers were former campers, child life specialists, or radiation therapists. One had been reading my blog before we had met, which I thought was pretty cool! The child life specialists and radiation therapists expressed throughout the week how this camp was the first time that they had ever interacted with patients outside of a hospital setting and had gotten to know their personalities, not just their patients’ cases. Many of these volunteers were from Michigan, and all arrived in one massive group in matching t-shirts. Dozens of teens from the same hospital center in Michigan had never met until this week. It’s shocking to think that so many people could be treated in the same small hospital, live in the same city, team up with the same care providers, under the same circumstances, and not get to meet each other until flying across the country.

Seizures made two unfortunate appearances while I was in Montana. The second could have been avoided, but the first was out of my control. The first, and worse of the two happened during my week as a camper when we went to a bowling alley. All of the loud noise, bright lights, and flashing games threw me for a loop, and I ended up going in and out of seizures for the remainder of the day. I spent that night in the health center just to be safe because an extra dose of Keppra didn’t help ease any of the events up. I eventually ended up taking Ativan, which seemed to relax my clenching hand, and help me to sleep everything else off. The second seizure instance at camp happened during my week volunteering. I had spent the night before staying up and talking with friends instead of going to sleep early, even though I knew that I had to be up the next morning.

Up until this week I had not interacted with kids who have lost limbs due to their cancer treatments, and it was a really humbling experience. These kids hopped their way up rock walls, navigated high ropes courses, swam, and made their way around campus without a problem. Their confidence to wear prosthesis or opt not to was incredible. My life challenges of living with an invisible illness are nothing compared to theirs of living with a visible one. They were stared at as we moved through the airport to board our planes, given pity looks, and sometimes even purposefully ignored. I never experienced any bullying for having short hair or a brain tumor, so I just assumed that bullying wasn’t a problem for kids with serious health conditions. I was wrong. I heard multiple stories about kids getting harassed for being bald and having cancer that made me sick to my stomach. When I think about how people act towards kids with cancer I think about compassion and kindness, but apparently that’s not the case with middle-schoolers and high-schoolers, which is a huge shame. These phenomenal kids are spirited, gritty and bold. I’m used to internally rolling my eyes as people tell me that I’m an inspiration. As a volunteer, I was able to be the person on the outside and looking in at such incredible, inspiring kids. They’re all going to change the world, whether they know it yet or not.

We all have to grow up a little bit extra to qualify for cancer camp, but once we get there, we get to be a kid again. I mean, where else can you spend the day making friendship bracelets?