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!
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.
Redefining the support group: my TEDx talk
Liz Salmi, a patient advocate, talks about her decision to be open and share what it is like to live and blog about living with brain cancer in 2013.
How to participate in the #BTSM tweet chat
#BTSM is a patient-run, Twitter community and is not owned by any organization, nonprofit or otherwise. We are for patients and care partners, by patients and care partners. Use the #BTSM hashtag anytime, and join us for a live Twitter chat on the first Sunday of each month.
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.