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!
Holy shit: nearly five years since first seizure, happy birthday to me
I never want to be a woman who hides her age. Every year I am older is another year I am alive. I am living with this disease.
Lift with your head: the other 90% of my brain
I strongly believe in the power of advocacy as an important role in brain tumor survivorship. But advocacy only stimulates the 10% of my brain. There are many other parts of our brains--parts controlling crucial functions like heartbeats, muscles, balance, movement, the respiratory system, etc.--that require stimulation and use. That is the part of my brain I am just now starting to put to use and challenge for the sake of healing.
Traveling with brain cancer and epilepsy
When in Rome, take your anti-seizure pills on local time.
Have you heard of temporal lobe epilepsy and déjà vu?
What creeps me out about the déjà vu is that I have heard it is often an aura for temporal lobe epilepsy. My tumor is in the parietal lobe, but the parietal is right next to the temporal lobe, and if my tumor were to ever spread, it could, theoretically, spread to the temporal lobe.
This is what cute looks like: engaged with brain cancer
There will be MRIs. There will be more decisions about continued treatment. There will be times I forget. There will be times when I worry.
What is family?
Upon hearing the news and finding out that I had a "mass" in my brain, my best friend called her dad. He was in town the next day--asking the important medical questions, demanding answers, advocating on my behalf (because I was too out of it to know what was going on).
Trying Depakote
All of this is great if the tremors go away, but I have been on the new drug for a week and I still have tremors--and they are weird. It almost feels like I've had way too much caffeine and I am shaking with excitement, but I am not excited, nor do I have extra energy.
