What Liz means to me

Liz has taught me everything without purposefully meaning to teach me anything. She has taught me how to advocate for myself in a powerful way – by simply, being myself. She has also taught me about science and policy, about clinical trials and chemo parity in the process. She is the person I would have wanted to be friends with in college but would have been too busy studying to meet.

We pull each other up and propel each other forward in everything that we do. She thinks of the little details that make all the difference (Harvey Milk postage stamps). We talk about when we die. We talk about what that might mean – for ourselves, for our friends, for our families and for our partners. We wonder together. We wonder about science, about research, and about protein powder. She calls me out when I take screen shots during our Google Hangout sessions. Whether she knows it or not, she is an anchor in my life. She learns about other communities and educates her co-workers for me – she’s a full-time ally. Her web design skills are incredible. She’s my friend, my cool aunt, my mentor, and my role model all wrapped into one. She believes in and she understands me. She hates how I text in sentences and hit send each time instead of sending paragraphs with all of my thoughts at once. She believes in me, and she has since 2012 (check out these throwback tweets):

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I was commenting on a post explaining how the brain tumor community has very few leaders, and was in the middle of making the point of how when Liz dies, our community will suffer a huge loss. But I stopped in the middle of my thought pattern. What will I do when Liz dies? It hit me. What do you do when someone who pretty much means everything to you without even meaning to is gone? We don’t talk every day or even necessarily every week, but we are connected. We just know what is going on with one another because we are a part of one another, because we have lived parts of each other’s lives. I don’t have an answer to that question yet, and I hope that I won’t need to have an answer for it any time soon.

I’ve talked Liz through a simple-partial seizure over the phone before. It happened about a month ago, actually. We were both extremely excited and talking about how great a phone call had gone between one of her co-workers and I, and the extreme excitement literally gave her a seizure. She started describing it to me and instead of listening I started talking to her about the homemade lasagna I was eating. I asked the right questions, made sure that she didn’t drive, etc., but talked to her about lasagna instead of the seizure. That was my way of helping. Liz was alone and didn’t have any of the medication that she needed with her, so I told her about my lasagna until someone else arrived to try and distract her. I don’t know if I’m going to be able to ever eat lasagna again now. Then, a few weeks ago, I had a seizure at the gym. Naturally, I texted Liz about how weird it was that we had both had gym-seizures. That’s just what we do. We have gym-seizures and we tell each other about them. It’s just another day in our lives, I guess.

Liz helped me realize that it was going to be ok when it wasn’t. When we first met in person in March of 2015 it was like seeing an old friend for dinner. Because that’s what it was, really. We had talked on Twitter, texted, and Skyped for three years at that point. We got dinner while she was in town for spring training with her husband Brett. She designed the #BTSM Chat logo with the orange theme color because she loves the San Francisco Giants, and even though orange is my least favorite color, I signed off on it. I hate baseball, but Liz loves it. Liz was in a punk rock band in college, and that’s, well, that last thing that I would ever do. We are so different and yet we are so much the same. We just get each other.

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Charlie Blotner (age 21, present day) and Liz Salmi (age 18, 1997), pictured making the same tilted head pose, wearing blue and green collared shirts in the closest dated photo that Charlie could find

Relationships like these form once in a lifetime.

Happy birthday, Liz.

Celebrating Our Cancer Hashtag Communities and Moonshot (June 27-July 4, 2016)

The cancer hashtag community stars are aligning.

This coming week, the online cancer hashtag communities will be celebrating. Why, you ask? We have two good reasons.

  1. The Cancer Moonshot Summit happens Wednesday, June 29, 2016, in Washington, D.C. and in satellite locations all over the United States (see DC agenda at bottom of this post). While several members of the cancer hashtag community will be attending, we all have the opportunity to provide input to the Cancer Moonshot (deadline July 1, 2016).
  2.  The 5th Anniversary of the beginning of Breast Cancer Social Media (#BCSM)—and the beginning of cancer hashtag communities on the web—happens July 4th!

Our celebration will take the form of several coordinated chats open to everyone, regardless of cancer type.

Monday, 6/27:
#BCSM Chat (use both #BCSM and #cancerchat hashtags) will host a cross-cancer chat at 9 PM Eastern Time about three of the Cancer Moonshot Working Group topics (check blog on #BCSM website for chat details):
–Expanding Clinical Trials
–Enhanced Data Sharing
–Precision Prevention and Early Detection
Ideas generated can be >>>> submitted online to the Cancer Moonshot. <<<<

Wednesday, 6/29:
Cancer Moonshot events in DC and satellite locations (see agenda for DC Summit below)

Wednesday, 6/29:
#HCChat will conduct official Moonshot chat (use both #HCChat and #Moonshot hashtags) at noon Eastern Time on the topic “Will the Moonshot lead to the death of cancer?” This chat applies to all types of cancers. Special guest will be Vincent T. DeVita, Jr, MD, who was head of the NCI during Nixon’s Cancer Act and author of “The Death of Cancer.”

Thursday, 6/30:
#LCSM Chat (use both #LCSM and #cancerchat hashtags) will host a cross-cancer chat at 8 PM Eastern Time about the remaining four Cancer Moonshot Working Group topics (check blog on #LCSM Chat website for chat details):
–Cancer Immunology and Prevention
–Tumor Evolution and Progression
–Implementation Sciences
–Pediatric Cancer
Ideas generated can be >>>> submitted online to the Cancer Moonshot. <<<<

Thursday, 6/30:
**Last day to submit Moonshot ideas at https://cancerresearchideas.cancer.gov/a/index**

Sunday, 7/03:
Our #BTSM Chat (use both #BTSM and #cancerchat hashtags) will host a cross-cancer chat at 9 PM Eastern Time about our hopes and dreams for cancer research and treatment in the future. This is a great way to wrap up the previous week’s chats about Moonshot ideas.

Monday, 7/04:
This is the 5th anniversary of #BCSM and cancer hashtag communities. This is truly a historic event. None of the other cancer hashtag communities would be here if it weren’t for #BCSM. I know that I, personally, owe #BCSM so much for guiding the path to my own personal healing.

The #BCSM anniversary celebration chat at 9 PM Eastern (use both #BCSM and #cancerchat hashtags)

The cancer hashtag communities hope you’ll join us for some (or ALL) of these special events and help us celebrate! To learn more about the cancer hashtag communities, visit http://www.symplur.com/healthcare-hashtags/ontology/cancer/

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AGENDA FOR THE CANCER MOONSHOT SUMMIT IN WASHINGTON, DC

 

Semester 6 + Summer Update

As usual, I was hyper focused on school this semester. Everything worked out well in that department, and the semester wrapped up with a 4.05 GPA, bumping my overall GPA up to a 3.97. I’ve said it before and I’ll say it again – academics have become my arena for competition now that I no longer compete in sports. Scoring high on an exam, setting a curve, or receiving praise from an instructor is my way of winning tournaments or being seeded at the top of a bracket. I haven’t lost my competitive nature, I’ve just channeled it elsewhere post-sport era.

I had the opportunity to take several courses relating to healthcare administration this semester, which were a blast. It was within these courses that my interests in research were highlighted even more so than ever before. I’ve also spent more time exercising this semester than I have in the past several years, and while I am (DEFINITELY) not the strongest person in the gym, I take pride in marking off the number of days that I work out each week in my calendar.

I may not play tennis or do the same things that I used to do before my surgeries, but I can still do so many things, and that’s important for me to realize. While part of life after all of my medical experiences is adjusting to the medications, need for extra sleep, and increased interest in brain tumor research, it’s also remembering that not everything is different. Many things are still the same. I’m still figuring my life out just like any other college student. And, the best part is that my concerns and dreams are starting to expand out even further past three or five years to ten years and beyond. I never would have thought that having concerns about the future would be a good thing, but when you used to spend every waking moment worrying about if you’re going to be alive next week, being able to worry about where you’re going to be living in 10 years is a strangely nice worry to have. My next MRI scan is in August, I’m starting to feel like everything in my life has hit a stride that makes sense. The only thing that could really go wrong in it right now is another brain tumor popping up, and, I’m really not planning on that happening!

I am spending my summer in the Child Development Lab here on campus and in the Child Life department at the children’s hospital I was at last summer, as well as continuing to conduct interviews for and work on writing my thesis. It has been incredible to hear families tell me their stories and have them open up to me in the ways that they have. What parents have said is what has stuck with me the most, though. I think that this may be because as much as I have asked my parents what it was like for them during the worst of my surgeries, testing, etc., they couldn’t have truly opened up to me because they were still trying to protect me. The parents that I’m interviewing have no reason to omit information and protect me from anything, though. I think back on when my dad first took the bandage off of my head after surgery and how he told me that it didn’t look “that bad,” and how I believed him. He went on to tell me months later that it looked absolutely horrifying, and how my mom almost threw up it was so bad. In that moment and upon first sight, my dad just wanted me to know that even though I had just had a life-altering and major surgery, something as irrelevant to my future as a scar was the last thing I needed to be worried about.

I’m also writing personal statements and applying to graduate schools where I’m hoping to pursue a master’s in social work with a health specialization. I have another exciting opportunity involving writing, research, community building, precision medicine and cancer care, but I can’t say what it is quite yet!

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!

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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