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!
Precision medicine and brain cancer
The big question is, which trial is the right one? Will I be that unicorn patient who might live a life that is statistically longer than the current patient population? And with the cognitive decline that comes with brain cancer, would this be a kind of life I’d want to live?
Is there such thing as too much information when it comes to our medical history?
Is it possible I provided too much information for my medical team? Yes, but I believe it better to share everything and leave it to the professionals to weed out extraneous details.
Sorry, I forgot to tell you my dad died 14 months ago
I did not blog about my dad when he died. I wrote a song.
How I chose my new neuro-oncologist
The doctor’s job is to make sure I receive good care, not be my best friend.
How I wrote this: My first blog post for a medical journal
The desire for a culture of transparency and openness does not just come from us “sick people.” This is what future consumers of healthcare expect—a group that will continue to grow as people are living longer with chronic conditions and serious illness.
Guerrilla healthcare redesign: Support group materials edition
How might you use your skills to redesign a patient experience?
Liz Salmi at Stanford Medicine X
…after delivering this talk, I heard from many people who identified with my experience. These are people who don't normally connect with my brain cancer background. All I can say is, not everyone has a perfect home life. You never know what is really going on unless you express it.
Would you take a short-term opportunity in an attempt to change the world?
What would you do, if you were offered a once-in-a-lifetime opportunity that, if accepted, would force you to leave the stability and comfort of an ‘everyday job’ BUT – might also give you the opportunity to change the world?