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?
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.
Transcript of my talk at Stanford Medicine X
This person who gave me almost nothing in life has given me so much more with his death. And for this, I am thankful. So there is no reason to be sorry for my loss.
Virtual visit with my dad's neurosurgeon
Because I am a curious person (and have learned that my dad is also a curious person), I asked the doctor if it was a good idea to get a biopsy of the tumor. The surgeon said that they could do a biopsy, but other than satisfying our curiosity, what good would it do? It might do more damage to him than good. And while we are curious, we should weigh our options on what matters most... Which to me (and hopefully to my dad) means quality of life.
Dear everyone with an oligoastrocytoma: Your diagnosis just changed
As more and more pathologists and doctors begin treating patients based on the genome of their tumor it only makes sense for the WHO to update their classification of CNS tumors. Because science.
A cranky primer on treatment for brain cancer, including a shoddy explanation of clinical trials
I was like, “What the hell? Write it all down? Who do you think I am, a person who just writes shit about brain cancer stuff?” And then I remembered I am a person who writes shit about brain cancer stuff.
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.