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!
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.
How the rest of the medical community deals with cancer
My primary care doctor sent me to see a new physical therapist for a back muscle injury. The therapist looked at my medical chart. Then he looked up at me. Then back to my medical chart. Then to me.
Four months at a time: living between brain scans
I feel bad blogging about fear and freak outs because it makes me sound like I get down on myself. This isn't true. I just happen to own a space on the Internet where I am allowed to tell the world that living with a slow-growing brain cancer can be scary sometimes.
My friend Logan: First person I knew with brain cancer
There is a drum solo in the song. As cheesy as it sounds, the solo (at the 4 minute 5 second mark) is actually really cool, and is a complete extension of Logan's personality: quirky, creative and lacking in ego. For some reason there is a cowbell in it. And it all makes complete sense because it came from the mind of Logan Whitehurst.
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.
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?
Lift with your head: the other 90% of my brain
I strongly believe in the power of advocacy as an important role in brain tumor survivorship. But advocacy only stimulates the 10% of my brain. There are many other parts of our brains--parts controlling crucial functions like heartbeats, muscles, balance, movement, the respiratory system, etc.--that require stimulation and use. That is the part of my brain I am just now starting to put to use and challenge for the sake of healing.