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 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.
Screw "watch and wait"... keep fighting
It sounds pessimistic, but let's be real: even when you are moving on with your life and enjoying survivorship or remission, you still worry about cancer from time to time.
The birth of the brain tumor hashtag on Twitter (and how it was inspired by the breast cancer community) #btsm
The birth of the brain tumor social media hashtag on Twitter, in all its glory.
Talking about median survival time with friends
My friend's reaction reminded me that most people don't know the scope of my diagnosis. I think it is best to keep the details here, on this blog. It is a positive thing for people to be proud of their friend Liz, a "brain cancer survivor."
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.
If only I got a dollar for every brain cancer scam on the Internet
If he was really concerned about the health and safety of his co-workers he could have said he'd read an article about this thing called cigarettes and that they've been proven to cause lung cancer.
Have you heard of temporal lobe epilepsy and déjà vu?
What creeps me out about the déjà vu is that I have heard it is often an aura for temporal lobe epilepsy. My tumor is in the parietal lobe, but the parietal is right next to the temporal lobe, and if my tumor were to ever spread, it could, theoretically, spread to the temporal lobe.
What is making me dizzy? The inner ear or the parietal lobe
After my alarm went off I got in the shower, dizzy still. I held myself up with the walls. I leaned on the counter as I brushed my teeth. I wrapped myself in a towel and watched Brett do his morning push-ups.