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!
The most misunderstood member of your health care team: the hospital chaplain
Chaplains can act a bit like social workers and therapists, but help patients explore the spiritual and/or existential hardships of a life-threatening illness.
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.
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.
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.
The birth of the brain tumor hashtag on Twitter (and how it was inspired by the breast cancer community) #btsm
The birth of the brain tumor social media hashtag on Twitter, in all its glory.
To have a slow-growing brain tumor
"But really, aren't there cases when grade twos just stay a grade two forever?" I implied that with my youth, health and intelligence, someone as awesome as I must be spared from this injustice.
I stayed up late for no reason except to enjoy it it
I stayed up late for no reason except to enjoy it it. Brett is playing Resident Evil 2/3/whatever on the Wii. We both keep ourselves entertained each day.
Don't you hate it when biased patient populations mess up the sample?
If grade and age alone were considered for prognosis, these factors would lead clinicians to prescribe unnecessary treatments due to trends reinforced by regional sampling biases.
Cancer treatment for dummies
As a matter of fact, the World Health Organization only recently classified cancer as "chronic disease," like diabetes and or stroke. This may still sound like a crap sandwich, but it sure beats the previous classification as a "deadly disease".