I’m Baaack!!

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.

 

8 thoughts on “I’m Baaack!!

  1. Welcome back! Beyond happy. We missed hearing your voice and thoughts, though Todd did an absolutely bang-up job while you were away. xx

  2. So, so happy to see you post! The Beast may have interrupted your life but you are beating him. I haven’t stopped the prayers and won’t. You really are amazing!

  3. Dear Karyn,
    Welcome back !!! You were so missed..but Todd did such a wonderful job of keeping us posted..Enjoy this time with your family . All healing prayers and wishes are headed your way.
    A good friend of ours, just suffered a massive stoke, so we know about aphasia too well. One day at a time..
    Love, Frogma

  4. I have aphasia as well since my major stroke in 1999. It sucks and it are the little, one syllable words that will get you every time. Praying for you and remember to talk and write slowly…it does get better 😘

  5. So happy to see this message! Just the headline brought a big smile to my face. I am thrilled for everyone involved but mostly for you Karyn!!! May the aphasia never return!

  6. Karyn … oh, so glad to hear from you. This is fascinating, gripping, disturbing, encouraging. You have so much love around you, near and far. A huge, huge hug for you (and for Todd, too!).

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