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.

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!

National Brain Tumor Society 2014 Phoenix Walk

This past Saturday was the National Brain Tumor Society‘s 2014 Phoenix Walk. There were 1,300+ people in attendance and the event raised $126,000 towards research run by the NBTS. The Liz Army‘s face was plastered on a banner to represent the voice of survivors and patient advocates. I sent her a text with a selfie as evidence. I really liked the set up of the event – well organized tents with clear and simple banners. I was joined by two close friends who were surprised that I was even awake enough to walk. I got up at 5:55am to get at the event early and help out – I hadn’t been awake that early since I took the ACT. I was able to talk with the woman running the event and disperse #btsm handouts too, which will hopefully provide a new support system for those in attendance.

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All of the survivors stood on stage for a few minutes and took photos. It was easy to identify other survivors for the most part because we were all given gray t-shirts to wear. I was a bit disappointed that there were not many adolescent/young adult survivors present, though. I wasn’t able to interact with all of the other survivors who were in attendance because I tired out after 3/4 of the walk and left early to rest. This walk was comprised of the largest brain tumor population that I had come in contact with at an event, and I’m glad that I was able to attend.

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I’ve had more headaches and seizures recently, so that’s all for now.

Students Supporting Brain Tumor Research

I spoke at an event for Students Supporting Brain Tumor Research on Monday night here on campus. It impresses me that the group is entirely run by high school and college students. Although the turnout was quite small, I was still able to communicate what I think the needs of the brain tumor community are to college students without that medical experience.

As it turned out, there was a fellow brain tumor survivor in the audience! He is a freshman here as well, and we even live in the same building. From what I remember about the brief conversation that we had, his tumor was in his right temporal lobe, and he is also interested in patient and research based advocacy. I am looking forward to hearing more about his story when we have lunch together next week.

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