Patient & Researcher Blog
Here I aim to capture what I am learning as a newbie researcher from a patient perspective.
Living with a slow growing brain cancer
It is taboo for researchers to talk about their work before it is published.
I think that’s a bummer.
My favorite part about research is learning new things in real time. Here I share my observations as a learner and my n of 1 (personal) findings as a patient.
Note: I started blogging about brain cancer in 2008, at age 29.
I had no background or knowledge about healthcare when I began. Please excuse typos and other misconceptions. What you read here is me in real time, like a time capsule.
There are more than 500 posts here. Use this search to look for something specific. Good luck!
Emily Morrison
“Whatever you're doing today… Take a minute for me,” she wrote. “Now put you’re heart in it and do it better.”
Epic adventure awaits
And if my next MRI shows tumor growth I can say, "Well, I am sure glad I took that crazy trip to Japan."
Brain tumor awareness: you are doing it wrong
As people passionate about brain tumors, we can shout about the existence of brain tumors until we are blue in the face, but without follow-up actions an “awareness” campaign falls flat and leaves patients and families feeling hopeless.
Zero shades of gray: Who's to blame for lack of brain cancer awareness? (CureToday.com)
Can you imagine Kitchen Aid selling a $350.00 Artisan Series stand mixer for our cause? Delta Airlines inspiring research dollars for painting an airbus gray? An NFL referee drawing attention to the disease by dropping a gray flag? Because I can't. Even brain tumor nonprofits don't even bother asking us to wear gray during fundraising walks and events.
Open thread: What does "supporting a cure" for brain cancer look like to you?
To me "supporting a cure" is being an advocate with the National Brain Tumor Society. I enjoy public policy and am a fan of the West Wing (which qualifies me to talk to Congress) (not really), so being an advocate is how I am supporting a cure.
What would you say to the most influential people in the brain tumor community?
I am struggling with what I should say. I don't want to preach to the choir. They already know we need more money for research. They know oral forms of chemotherapy aren't equally covered by all health insurers. They know there are more than 130 different kinds of brain tumors and that brain cancer is the #1 cancer killer in children.
Dave gets Goliath: brain cancer treatment at Duke University
(We also got sandwiches together along with a number of other brain tumor patients, got lost in the city, made jokes about a whole bunch of people with brain cancer getting lost in the city, and, well... you had to have been there.)
Top 10 reasons I am a brain tumor advocate
This week I joined with hundreds of my fellow brain tumor advocates from around the country in Washington, DC, to attend the annual “Head to the Hill” lobby day organized by the National Brain Tumor Society. This is the second year in a row I've traveled to our nation’s capital to educate our members of Congress on critical issues currently facing the brain tumor community.
Students needed: specializing in the field of brain tumors
Long story short, Christi and Super Awesome Nurse are in the middle of getting all the paperwork filed so Christi can study with Super Awesome Nurse and hopefully (fingers crossed) become another super awesome nurse in the field of neuro-oncology.