Support groups are not for everyone
I’ve been in a state of brain cancer reflection this week as I prepare for two upcoming presentations related to patient engagement through digital media. (I know, I’m a nerd.) Then I remembered this day… The bus About four weeks after my first brain surgery I decided to go to my first cancer support group...
Something is waking me up at night
I’ve had nothing medical to say for a long time, and now… this. Over the past two months I’ve been woken up in the middle of the night by a weird sensation. It feels like I bumped my elbow super hard, but instead of the sensation being in the elbow it is everywhere. And only...
Questions submitted for the 2012 National Brain Tumor Society Summit
Before I left for the National Brain Tumor Society’s annual summit I asked The Liz Army blog readers if you had questions you would like me to ask doctors and health care professionals I would presumably meet at the event. Keep in mind, I had never attended an NBTS summit and I did not know...
Oops
I short-changed my Keppra dosing this week by mistake. I’m supposed to have 1,500mg in the morning and 2,000mg in the evening, but I must have filled up my Old Man Pill Case wrong. All this week I’ve been taking 1,500mg in the evening. The good news is that I’m feeling fine. I always told...
The radiologist on crack
Long story short: I had an MRI on Friday. The radiologist said it looked like there was tumor growth compared with my last MRI (from November 2010). My neuro-oncologist and Super Awesome Nurse disagreed with the radiologist and think he’s on crack. (My words, not theirs.) They said this specific radiologist tends to be overly...
A recent interaction between the neurologist and me
Dr. G.P., Twice this week I experienced an odd sensation. I don’t think I was having a seizure because I didn’t have an aura and I didn’t have any Jacksonian-march sensations characteristic of all other seizures I’ve had. What happens is I suddenly become confused about what constitutes the left and right sides of my...
My hands are on fire
The tremors. The twitches. The random eye movements. It’s enough to drive you crazy. At least I know why it happens.
It’s just one week. Right?
I start cycle 14 of Temodar tonight. My red blood cell count is a little low, which makes me “a little anemic,” but it is not enough to be concerned about, says Super Awesome Nurse. I’ve never been told I was anemic before. I guess that’s just part of this cancer experience: a bunch of...
First chemo of the new year/decade
My 11th month of Temodar (chemo) starts tonight. Last year I re-learned how to walk after brain surgery. Go me! Last year I got my driver’s license back after being seizure free for more than six months. Go me! Last year I got a great job even though I have brain cancer. Go me! My...
Fear of seizures
I need to stop living like it’s 2008 and I could have a seizure any time, any where. I am sick of the anxiety. I want to be normal again.
Viva la medical insurance x 1 billion
The note says, “Your drug plan saved you $836.95.” This is for a monthly supply of just one anti-epileptic medication.
Fuck brain cancer
At this time last year I was having seizures and still didn’t know what was wrong with me. I had seizures at Target, seizures at Starbucks, seizures in the shower, seizures while playing cards in my living room. Within a few weeks I was diagnosed with a glioma around the same time as Sen. Ted...
