So, I’ve been gone…having brain surgery, some dreaded follow up brain surgery, taking some extreme measures to make this thing disappear…and so on.
I really have to thank my equally verbose husband for keeping you all informed about my information when I couldn’t keep you informed about my information.
Thank you for all of your kind thoughts, good prayers, and general well wishes. Keep them coming, I’m not out of this yet – new drugs, new tests, new experiences… They have been working so far, let’s not stop them just yet…or ever, really.
Some of you have asked what its like to have Broca’s Expressive Aphasia. Well, it sucks. When it returns, it sucks. Then you wait for it to return a third time…which would REALLY suck.
Survivors with Broca’s aphasia – with no loss of understanding (mostly):
- Can have great difficulty forming complete sentences.
- May get out some basic words to get their message across, but leave out words like “is” or “the.”
- Often say something that doesn’t resemble a sentence.
- Can have trouble understanding sentences.
- Can make mistakes in following directions like “left, right, under, and after.”
(Thank you strokeassociation.org for that description)
I know a man who had a stroke. He’s got aphasia. He can’t make it go away. He would REALLY like to wish it away. I now know what it feels like to experience that guessing game of people wishing they could judge what you’re trying to say – which they’re usually wrong about. You can think it in your brain and no one can get it out of your mouth. It’s terrifying to think about losing your ability to speak, especially your ability to write. I wish I could give him a magical cure.
Now, some of you have asked how I developed this lovely pocket of mysterious marvel. There have been many theories, some of which include:
- My brain is just wacky
- My brain is just zany
- My brain is just messed up because of the clinical trial I was on. (i.e. immunotherapy)
- My brain is just messed up because of …
Take your pick…but let’s be clear, the immunotherapy trial is not one I regret in any way. The swelling that triggered my brain reply was caused by fluid build up in my cavity (ooh, cavity!). It wasn’t something that could be controlled. The Avastin has helped with the recovery – more than regular steroids. The Temodar showed to be something I’d respond to well. With the two combined, I now have more tests to take, more visits to make, and more driving needs to be met. So, it’s a small price to pay.
So, it’s on to Avastin and more Temodar. Let’s hope that keeps the beast away and gives me more time. In the mean time, I’ll continue to write about living with and fighting brain cancer.