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!
Should a 32-year-old with brain cancer save for retirement?
Should one save for retirement when they have an incurable form of cancer with a high mortality rate?
Lobbying with my emotions: brain tumor advocacy is conjuring up all kinds of dirt
I have no idea if my father is 'proud' of me, but in my mind he has no right to be proud. Because nothing of who I am reflects on him, his skills as a parent or of who he is as a person. Pride is feeling good about something you did. He never did anything, and he certainly never reached out during my entire cancer process. I never got flowers. I never got a card. He didn't come to my wedding.
Brain tumor advocacy in full swing: it's time to educate Congress
There are people who are mortgaging their homes just to get their kids the Temodar they need. Some people are skipping their treatment and using it only every other month.So you can imagine what a blessing it would be to brain cancer patients everywhere if our chemotherapy was treated the same way as chemo for every other cancer patient. For reasons unknown to me, we are being discriminated against, and this is not OK.
MRI one-year post Temodar chemotherapy
Since I am psychic, and have answered a million questions about brain scans, I am going to answer all the questions I know you have.
Surprisingly, no pre-scan jitters this time
Dr. L., asked if I would be OK having one of those super long MRIs... the kind that last for over an hour... Since I am a big fan of scans and medical procedures I said, "Hell yeah!" He already thinks I am crazy. Big long scan. New doctor to scrutinize my medical history. Should be interesting.
Brain surgery: the inside story (pun slightly intended)
I tell people brain surgery is easier than they think. The doctors put you to sleep and then you wake up X-amount of hours later and you never know what happened because you were asleep! You hurt, and you have to take it easy for a long time, and you can't go on any roller coasters for a while, but other than that it is all good.
Creating a positive cancer environment: Stupid Cancer rocks the house
Probably the most amazing moment of all was on the first night I was there. There was a kickoff event in a nightclub for all the young adult cancer survivors and halfway through a beautiful young woman walked up to me and said my name. It took me about five seconds to realize I was looking at Emily, a young brain cancer survivor I met 10 months ago via my blog.
The young adult cancer movement is going to Vegas
Then I explain that I am not going to see any shows. I don't drink or gamble. And I am there to attend a summit for young adults with cancer. I tend to bum people out a bit.
Screw "watch and wait"... keep fighting
It sounds pessimistic, but let's be real: even when you are moving on with your life and enjoying survivorship or remission, you still worry about cancer from time to time.