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!
Hacking the hospital death
No offense but dying in a hospital is the worst. We don’t have time to get him home, so what else can we do to make this a better experience?
This is not a death sentence
To those of you diagnosed with a brain tumor–malignant or otherwise–for the love of god (or whatever you believe in), don't tell yourself the diagnosis is a death sentence. Be as negative as you want. Dread the biopsy. Freak out about the brain surgery. Get sick of chemo. But don't tell yourself this is death sentence.
Eric Arons
I don't know why he popped up in my mind this week, but he did. I checked out his Facebook page and noticed all the recent posts were of friends posting well-wishes on his page. He wasn't writing anything. Photos appeared of him with friends... except instead of him playing disc golf, he was in a wheelchair.
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.
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.
What art can do to us
With cancer I think about death more than I did before, and when faced with situations filled with extreme beauty and emotion I breathe in each moment knowing it may be the last time I experience it. The Rothko painting was a special moment for me. I don't want it to be my last.
This is almost a haiku
Something I'm afraid of: death. Something I'm not afraid of: death. Funny how that works.