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!
Everything you thought you knew about your brain cancer diagnosis is going to change
If I was a patient getting diagnosed today I would make sure I was being treated at a medical facility that could sequence the genome of my tumor in order to find out what type of treatment I should be receiving. If my local hospital could not perform this type of high-level activity, I would seek a second opinion just for the sake of knowing what I truly have in my head. From there I could go back to my local hospital with that data and use it to receive the right care.
Dave gets Goliath: brain cancer treatment at Duke University
(We also got sandwiches together along with a number of other brain tumor patients, got lost in the city, made jokes about a whole bunch of people with brain cancer getting lost in the city, and, well... you had to have been there.)
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.
Baseball: the ultimate cancer therapy
Whenever Tim Lincecum struck out a batter, Buster Posey hit a home run, or Pablo Sandoval wore his hat sideways during a rally, I felt like I was part of something greater than myself. I became one of hundreds of thousands of fans in orange and black who leave their hearts in San Francisco.
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.
Pets and cancer
I no longer worry about getting cancer (HA!), however, I do want to improve my overall health--and maybe a cure lies within a lovable ball of fur.
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.