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!
Hacking the hospital death
No offense but dying in a hospital is the worst. We don’t have time to get him home, so what else can we do to make this a better experience?
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.
Everything you thought you knew about your brain cancer diagnosis is going to change
If I was a patient getting diagnosed today I would make sure I was being treated at a medical facility that could sequence the genome of my tumor in order to find out what type of treatment I should be receiving. If my local hospital could not perform this type of high-level activity, I would seek a second opinion just for the sake of knowing what I truly have in my head. From there I could go back to my local hospital with that data and use it to receive the right care.
I wish Brittany Maynard had met other 29-year-olds with brain cancer
I have known people who have died from brain cancer, and I know people who are still living with this disease. I wanted to tell Brittany to wait it out--you don't know how fast these things will bring you down. I wish Brittany gave herself time to meet other people like herself and to find out what life can be like for a 29-year-old with brain cancer. But who am I to tell a stranger what to do?
Does a brain tumor diagnosis mean you are disabled?
How we deal with our response to the diagnosis and treatment, our abilities or disabilities, is totally up to us. We can't perform our own brain surgeries or invent new drugs and treatment, but we can choose to strengthen our metal state of mind when it comes to our health. At the risk of sounding like a self-help book, it really is all about our attitude.
This is not a death sentence
To those of you diagnosed with a brain tumor–malignant or otherwise–for the love of god (or whatever you believe in), don't tell yourself the diagnosis is a death sentence. Be as negative as you want. Dread the biopsy. Freak out about the brain surgery. Get sick of chemo. But don't tell yourself this is death sentence.
Braces and brain scans: straightening your teeth with brain cancer
Us MRI Elite are told to complete a form asking about all metallic objects that may be hidden in and around our body before we have each scan. There are about 30 standard questions, including: Do you wear a pacemaker? Do you have a shunt? Do you have any metal plates or screws in your body? Do you have any metal fragments in your eyes? Have you ever worked with metal objects? Have you ever attended a Slayer concert? (Not really, but imagine that!)
