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!
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.
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?
Lobbying with my emotions: brain tumor advocacy is conjuring up all kinds of dirt
I have no idea if my father is 'proud' of me, but in my mind he has no right to be proud. Because nothing of who I am reflects on him, his skills as a parent or of who he is as a person. Pride is feeling good about something you did. He never did anything, and he certainly never reached out during my entire cancer process. I never got flowers. I never got a card. He didn't come to my wedding.
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.
Brain surgery: the inside story (pun slightly intended)
I tell people brain surgery is easier than they think. The doctors put you to sleep and then you wake up X-amount of hours later and you never know what happened because you were asleep! You hurt, and you have to take it easy for a long time, and you can't go on any roller coasters for a while, but other than that it is all good.
National Brain Tumor Society refers patient support to Imerman Angels
National Brain Tumor Society recently sent an announcement that they will be discontinuing their Patient Line and Support Network to instead focus more on research and public policy. While I am bummed about the discontinuation of the patient support network (as I was one of the support peeps) I totally understand the decision made by the NBTS board of directors.
Not dying from cancer: the ultimate imposter syndrome
My friends celebrate the end of my treatment like I'm some sort of badass. I feel like a fraud because I didn't really do anything. I was a participant in the process.
