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!
Spoiler alert, I'm still alive: 10 years later
I have had a brain tumor for one quarter of my life. I am the same person I was before but I am completely changed.
Pushed out of the nest: Leaving Kaiser for a PPO
Changing health insurance can be scary, but especially for people with pre-existing conditions, and those who are medically complex and “expensive.”
Feeling the love
July is just around the corner and that means it will be my birthday soon. I will be 35, and I say that with great pride because getting older in this uncertain world (i.e., living with an astrocytoma) means appreciating every day.
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.
Together we're giant: forgetting about brain cancer for a day
To me, 'without struggle there is no progress' totally applies to cancer. It captures us, and holds us hostage. And if we are lucky enough to be physically freed from cancer, and escape treatment intact, there are parts of us, at times, that are emotionally enslaved by cancer. I don't want to admit it--because it sounds embarrassingly weak--but I know I am, at times, enslaved.
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.
Should a 32-year-old with brain cancer save for retirement?
Should one save for retirement when they have an incurable form of cancer with a high mortality rate?
Lobbying with my emotions: brain tumor advocacy is conjuring up all kinds of dirt
I have no idea if my father is 'proud' of me, but in my mind he has no right to be proud. Because nothing of who I am reflects on him, his skills as a parent or of who he is as a person. Pride is feeling good about something you did. He never did anything, and he certainly never reached out during my entire cancer process. I never got flowers. I never got a card. He didn't come to my wedding.
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.