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!
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.
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.
Questions submitted for the 2012 National Brain Tumor Society Summit
Before I left for the National Brain Tumor Society's annual summit I asked The Liz Army blog readers if you had questions you would like me to ask doctors and health care professionals I would presumably meet at the event.
What do you want me to learn at the National Brain Tumor Society Summit?
If I am going to be surrounded by the best and brightest in the world of brain tumor research and advocacy, what do you hope I learn? What information do you want me to bring back to all of you so you can read about it here on the blog?
Brain tumor advocacy in full swing: it's time to educate Congress
There are people who are mortgaging their homes just to get their kids the Temodar they need. Some people are skipping their treatment and using it only every other month.So you can imagine what a blessing it would be to brain cancer patients everywhere if our chemotherapy was treated the same way as chemo for every other cancer patient. For reasons unknown to me, we are being discriminated against, and this is not OK.