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.

lgg

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.

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.

standing-room

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.

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.

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.

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? 

Screen Shot 2014-08-12 at 8.34.47 PM

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.

July #BTSM Chat – Addressing Patient Symptoms and Clinical Trials with The National Brain Tumor Society

#BTSM chats teamed up with The National Brain Tumor Society (NBTS) for July’s chat to discuss addressing patient symptoms and clinical trials, and, we even made an awesome, special logo for the event:

july chat logo

NBTS made a really cool storyboard to recap highlights of the chat here if you’re interested in seeing more of the full conversation. I was off the grid and in Montana when this month’s chat took place, and The Liz Army did a fantastic job moderating. NBTS also launched a new, and brief survey (that will take less than a minute to complete) to gather patient/caregiver perspectives which I encourage you to take here. When asked about the quantity of benign vs. malignant brain tumor clinical trials, NBTS responded that: “Clinical trials can be for both malignant and benign…often more in malignant space, though. early phase clinical trials evaluate safety and identify evidence of biological drug activity, such as tumor shrinkage. later phase efficacy trials commonly study drug clinical benefit, eg increased survival or improvement in symptoms.”

  • Q1: [for NBTS] What does the term “clinical trial endpoints” mean?

– A1: “Endpoints are outcome measures that allow us to decide whether a treatment provides clinical benefit” – NBTS

  • Q2 [for everyone]: What are the top symptoms that you think should be addressed in brain tumor drug development?

– A consensus answer was a drug that could simultaneously shrink tumors while easing seizure and headache symptoms would be ideal, as well as one that does not cause tremors, which Temodar (a commonly used oral chemo pill for brain tumors) does. In a perfect world, this drug would also not cause a change in appetite and minimize the need for steroids, eliminating moon face.

  • Q3: Have you (or your loved one) taken part in a clinical trial–if not, what has prevented you from taking part in a clinical trial?

– Many participants responded that a clinical trial was never discussed, nor offered to them.

  • Q4: If you DID participate in a brain tumor clinical trial, how did you find out about it?

– One of the better resources to search by tumor type is clinicaltrial.gov if you’re interested in finding one

  • Q5: If you had the opportunity to help give input on the development of brain tumor clinical trials, would that be of interest?

NBTS is currently working on their own clinical trial finder (nice!), where people will be able to search by tumor-type. In the meantime, the Alliance for Clinical Trials In Oncology is a way for patients to get involved in developing clinical trials that matter. Those involved can:

  • Attend and participate in scientific meetings
  • Review study concepts and protocols
  • Assist in designing study accrual strategies
  • Develop plain language study result summaries
  • Make presentations to interested groups of scientists and clinicians

Tune in for the next #BTSM chat taking place on August 3rd, same time, same place!

 

 

 

 

May #BTSM Chat – Brain Tumor Awareness Month

May’s #BTSM chat focused on events and campaigns that are taking place this month, Brain Tumor Awareness Month. We discussed ways to get involved with The National Brain Tumor Society (NBTS) throughout the chat this month instead of using specific topics.

Our chat’s very own @TheLizArmy, @SarahFunes, @ashmt as well as @mAssKicker1 are all in DC this week for NBTS’s Head to the Hill event. The event teaches advocates about key public policy issues, and provides them with an opportunity to speak with congressional leaders. These conversations aim to raise awareness of the needs of the brain tumor community, and the event itself brings together brain tumor advocates from across the country.

Tuesday, May 6th (TODAY) was Congressional Call-in Day from 9am to 5pm. While the advocates mentioned above are in DC, the rest of us could join from home by calling our legislators’ office and talking with their staff about the same issues. The NBTS’ website had a script with prompts to follow. The goal is that legislators would hear from the advocates in DC, and then hear from us. It’s a double whammy.

The NBTS also has a campaign called Sharing Our Knowledge. The campaign wants to know what you needed to know before, and what you can tell people now, post-diagnosis/during survivorship. They are using the hashtag #BTVOICE from May 18 – 31 on Twitter, but you can submit your responses through their website here as well.

Additionally, NBTS is hosting a video chat on May 22nd called Frankly Speaking About Brain Tumors from 2:30-3:20pm EST. The chat wants to help people learn how to make empowered decisions for their treatment, and gain an understanding of current brain tumor research and treatment options. It would also like to help people find out how they can get involved in their communities and take action for brain tumor advocacy all year long. You need to fill out a form with your name and email address in order to receive an invitation to the chat, and you can do so here.

The next #BTSM chat will take place on June 1st. Join us!

OMG! Stupid Cancer Summit 2014 In Review

The weekend was full of engaging speakers, networking opportunities, and meeting up with friends. While the location, Las Vegas, was a neurological nightmare with constant flashing lights and loud noise, the trip was well worth it. This summit was less about information, and more about meeting people from my perspective. If I had to describe the summit in one sentence, I would say that the event is a place for survivors from around the country to meet each other and learn about resources at their disposal. I wrote in my last post that I would publish a list of resources that I came in contact there, and I will, but in a separate post. Although the nerd in me prefers conferences full of data and analyzing research reports, I still found this summit to be a fantastic experience. I was able to meet several #btsm chat participants in person, and hear from brain tumor survivors what they think is lacking the most in their support groups, if they were even able to find one in their area.

One of the keynote speakers, Dr. Roni Zeiger, introduced the patient HUMDIS scale: How much does it suck? This method of patient pain rating emphasizes how much their symptoms interfere with their day to day activities instead of just circling a happy or sad face on a piece of paper. But, in reality, do doctors really have the time to have this discussion at length with a patient and discuss how their day is going? My neurologist most certainly does take the time to do so, but I haven’t heard the same from very many other patients.

The advocacy burnout session interested me the most. It addressed how to “stay in the game” when it feels like everyone around you is dying. The sense of “I can’t stop it” overwhelms many patient advocates, but as advocates, we have to remember that our job is not to keep people alive. One attendee said something that really resonated with me when it comes to feeling the need to spend less time with healthy family and friends, and more time with sick patients. As she put it, “These people need me right now because they are sick.” I’ve found myself thinking about patients more and more as the year has gone on, especially since so many teenage patients that I had known died this past year. The session mentioned something called compassion fatigue that I had never before took the time to think about. Compassion fatigue can be described as a preoccupation with an individual or cumulative trauma of others, and absorbing the trauma through your own eyes and ears. I heavily identified with compassion fatigue. Sometimes we, as advocates, feel like we must be failing because people are dying. This discussion brought up the importance of boundary setting between ourselves and patients because often times we are the emotional first responders. The factors that mitigate compassion fatigue are being highly present, sensitively attuned, well-boundaried, heartfelt, and empathetically engaged with self-awareness at its foundation.

The “cancer as chronic” session was beneficial for me as well. It confirmed my belief that everyone at times has or has had an expiration date mindset. It’s hard not to be frustrated with our medical conditions when we don’t get a break from regulating our bodies with medication, and managing our conditions as chronic. Additionally, the session reinforced that although it might feel like our responsibility, managing the emotions of friends and family surrounding a cancer diagnosis is not our responsibility as patients. The session addressed how minimizing the statement “I could get hit by a car tomorrow…” is, and other futile statements used to convey a “positive outlook” about living with cancer. I think that the session brought a sense of calmness to the group as we all realized that we were going through the same type of situations when living with a chronic condition, and that we all have dealt or are dealing with family members or friends who at times just don’t “get it.”

Information about Stupid Cancer’s 2015 summit was debuted in the closing ceremony. Cancer Con will take place in Denver from 4/24 – 4/26, and you can add yourself to the mailing list for updates.

As an aside – I turned 19 today. Here I am, still alive and kicking with the help of 336 pills of Keppra and 1,680 pills of Vimpat in the past 365 days.

OMG! Stupid Cancer Summit 2014 Brain Cancer Patient Panel and Focus Group

“Benign tumors are tumors that cannot spread by invasion or metastasis; hence, they only grow locally. Malignant tumors are tumors that are capable of spreading by invasion and metastasis.” – NIH

By definition, the term “cancer” applies only to malignant tumors. Chemotherapy, craniotomies, radiation, and ports placed for both types of tumors are however the same. The biggest takeaway from this afternoon’s session is that we need to remove the words “benign” and “malignant” from our vocabularies, and step back to look at the patients, not the one word that differentiates them because of a pathology report. Both types of tumors so often have the exact same treatments and effects because of tumor location, not tumor grade. Yet, one word typed in a patient file can shut patients out from any type of potential follow-up care at a cancer center or support group, and leave them ineligible financial aid.

Several non-profit travel aid and health insurance resources were thrown out during the panel as well, and I will post the names with links to all of the resources that I learn about this weekend once the conference wraps up.

A few key quotes from the discussion worth sharing:

  • “If you find something [treatment wise] that your doctors aren’t offering, go for it”
  • “We need multidisciplinary, comprehensive plans that involve neurosurgeons, radiation oncologists, fertility specialists, etc. working together on behalf of the patient”
  • “Finding someone to talk to about your diagnosis is so much better than doing nothing”
  • “Patients have the right to know about and have the option to talk to a fertility specialist within 24 hours of their brain tumor diagnosis”

Essentially, be the decider in your care.

panel

We came. We talked. We conquered.

Tomorrow includes three main breakout sessions, and I will be attending a total of six meetings set up throughout the day. You can follow the conference online by searching #OMG2014 on Twitter.