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!
Seizure drugs: Where is our jetpack?
By the way, no matter who you are, or what you do, someone will always be older than you and will be able to get away with belittling your minor neurological deficits.
Support groups are not for everyone
I realized I never wanted to go to a general cancer support group again. On the way out I asked the social worker if there were any brain cancer groups. She handed me a list of with about 200 groups around the greater Sacramento region. Just one group focused on brain tumors. I needed to head to the Internet to find all of you.
Do I have neuropathy? Something is waking me up at night
Over the past two months I've been woken up in the middle of the night by a weird sensation. It feels like I bumped my elbow super hard, but instead of the sensation being in the elbow it is everywhere. And only on the right side. And this sensation makes it hard for me to stay still. I am jumping out of my skin.
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.
I accidentally self-titrated to a lower dose of Keppra, and I feel good about it
I told myself I'd be super careful with the seizure meds because... who wants a seizure? But deep down I've often questioned the reasoning behind what I was prescribed.
That feeling when your radiologist and oncologist disagree…
He seemed freaked out. I could tell by the look in his face. He felt compelled to hug me and let me know that "a lot of people are thinking about you, and care about you. Be strong."
A recent interaction between the neurologist and me
During these spells the world looks as though I view it in a fisheye camera lens, and I feel like things are far away. I am clumsy and confused about the location of my body parts. And even if I am looking at my hands they feel foreign.
