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!
Where I am at, in my head
Check out this amazing (noun) who was diagnosed with (part of the body) cancer. They were on (type of treatment) but it didn’t get them down! No way, no how! They are so (adjective) that they signed up for (type of running activity) and completed it. You should be inspired!
I can do a push-up: Hitting a fitness milestone
If life is short, and if my tumor grows back, it is worth having made myself as strong as possible before I start treatment again. It is worth feeling good in my own skin, especially if I only have a short time in this skin.
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.
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.
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.
My brain: 16 months after Temodar
Hallmark is seriously missing out on the "thank you for saving my life" card genre.
Getting back to exercise after brain cancer treatment
If life is short, and if my tumor grows back, it is worth having made myself as strong as possible before the fight. It is worth feeling good in my own skin, especially if I only have a short time in this skin.
Living is hard work
Was she right? Or was she wrong? Could someone so healthy have an opinion like that? Or was her positive attitude the right way to go?
Use it or lose it: the no-exercise confession
The bad thing was that the odd sensation I get while exercising due to sensory loss from my last brain surgery was overly weird and disconcerting. That's right... the thing most out of shape was my body's response to brain damage.