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!
Dear hospitalist: Hello from a former patient
I was only your patient for a few days, but your willingness to stay in touch during a crucial time changed my life forever.
Breaking down the barriers to clinical trials
We have a problem with clinical trials for people with brain tumors: Not enough people are enrolling in clinical trials, and many trial sites fail to meet enrollment needs required to conduct trials.
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.
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?
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.
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.
So now my dad has brain cancer, too
it has taken me two full weeks to complete this blog post because I am (still) conflicted about how honest I should be about a man who was recently diagnosed with brain cancer. It is my longstanding policy to be honest in all things here, on my piece of the Internet, but I feel guilty outing a man for his crappy behavior when a terminal diagnosis is involved.
David, Part 2: The best thing I ever did in my life
A few hours after I learned David had started hospice I woke up in the middle of the night with an incredible urge: I had to see him. I didn't want to be a burden, and I felt like I was crazy, but I had to do it. Our last goodbye was not right at all, and I couldn't let our friendship exist on the one-dimensional plain of "we both have brain cancer." I wanted to know who he was as a person, outside of the disease.
Tied for worst feelings ever
Tied for worst feelings ever: People assuming you beat cancer when you haven't, and reminding people you still have cancer and making them cry.