Donate your spit for science. I did.

I did my part to help science this week via spitting in this lil container for The International Low-Grade Glioma Registry. Dr. Elizabeth B. Claus has organized a study with researchers at Yale University School of Public Health and Brigham and Women’s Hospital Department of Neurosurgery to learn more about low-grade glioma (LGG). This study is partially funded by the American Brain Tumor Association and seeks to figure out why some people develop LGG and others do not, the effect of this diagnosis and the associated treatments on daily life including the ability to work, drive, sleep, exercise, or take care of oneself and/or family, etc.

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Any person over the age of 20 years with an initial diagnosis of LGG can participate. The study asks participants to 1) provide a pathology report, 2) complete a 20min online questionnaire and 3) provide a saliva sample that allows them to look at changes in DNA.

Dr. Claus is extremely receptive and responsive to questions, (we have been emailing back and forth for the past week) and is interested in what patients have to say. She’s even considering making a Twitter account to join #btsm! If you fit the requirements for this study (age 20+ and have been diagnosed with a LGG) I beg you to participate. Research on us current brain tumor patients will benefit future patients.

Upload a document. Take the short survey. Spit in a container the size of a contact case..for science.

You can learn more about the study and how to enroll here.

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Four years later

My awake-craniotomy took place 4 years ago today. Things that would have been long-term goals 4 years ago are now just things on my to-do list for this month. Things that I never thought I’d see happen are now daily occurrences, in the best way possible. I got better, but not everyone does. I had a great support system, the financial resources to weigh my options and select my surgeon, and the time to do so. My latest MRI was last month, and everything is still stable. Even so, every day is a tightrope walk of accounting for sleep, taking medication, and managing symptoms. My life wouldn’t be anything like it is now if it wasn’t for this patient experience, and I wouldn’t change it.

Community engagement has always been how I’ve processed. We’re talking about the financial impact of being treated for a brain tumor during tonight’s #btsm chat (6pm PST/9pm EST) – all are welcome to join, share, and learn.

Here’s a video of me giving an update four days after surgery, four years ago for a fun flashback.

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.

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.

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.