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!

Liz Salmi 1/29/11 Liz Salmi 1/29/11

Will this EEG determine once and for all if I have having increased seizure activity?

As long as knives aren't involved, I think it is cool to learn as much as possible about my brain. I've had pictures (CT scans and MRIs), and surgeries (tissue samples), but now I get a graph!

Liz Salmi 1/29/11 Liz Salmi 1/29/11

I honestly can’t remember how many months I’ve been on chemo

I am supposed to start another round of Temodar in about a week, but I can't remember how many months I’ve been on chemo.

Liz Salmi 1/27/11 Liz Salmi 1/27/11

A recent interaction between the neurologist and me

During these spells the world looks as though I view it in a fisheye camera lens, and I feel like things are far away. I am clumsy and confused about the location of my body parts. And even if I am looking at my hands they feel foreign.

Liz Salmi 1/15/11 Liz Salmi 1/15/11

Can you be a survivor when you are living with cancer?

If you die from cancer you shouldn't be labeled a "non-survivor".

Liz Salmi 1/9/11 Liz Salmi 1/9/11

If you had migraines you’d know it

Why do people feel the need to show off by saying their situation is worse?

Liz Salmi 1/6/11 Liz Salmi 1/6/11

The difference between a seizure aura and a partial seizure

A partial seizure would cause me to feel some sort of “ants marching up my arm” sensation, also known as a Jacksonian march. But this was more of a "world spins sideways and time slows down" sensation.