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.

 

Silence, I Command Thee!

Another post surgery / treatment side effect:

It started post surgery, so I’m assuming it was the cause, and it continued throughout the 6 week treatment phase. This one effected everyone around me, so I’m sorry friends and family.

I became ridiculously hypersensitive to sound and activity. This in my house full of musicians and music lovers – including a child who sings constantly.  No seriously, he rarely stops. We played no music from October 12 to late January. No radio, no CDs, no iPods and worst of all, no instruments. In my house are drums, cajons, didgeridoos, bongos, a cuica, tambourines, flutes, electric and acoustic guitars, a piano, a keyboard and an accordion. You might ask, ‘How can you stand it when you’re NOT hypersensitive?!’ Good question. I think they found any reason for me to leave the house just to be able to play something…anything for even a few minutes.

In the car, the sound of the turn signals was excruciating. The little repetitive noises that my children make were excruciating. The television, at what any other human with normal hearing would call quiet, was loud. The gym where the kids take classes – that was the worst. Multiple sources of noise at once sent me into a desperate attempt to escape.

Aside from the moratorium on music, the hardest part of this new super hearing was living in a house with 2 young kids – who, being young kids, naturally make noise.  They play, they argue, they get mad, they make noise. My husband and my mom (who basically lived with us for a few months) spent a lot of time reminding them to be quiet, asking them to lower their voices.  Essentially, asking them to be less childlike.

Earplugs became my constant companion. I used them inside the house, when I went out, when I went into stores/restaurants, when I saw a movie, pretty much any situation where I couldn’t ask someone to turn the sound off.

Next time you walk into a restaurant – put yourself in the shoes of someone who is sensitive to noise, someone who falls into the autism spectrum for instance. I walked into a ‘restaurant’ with my husband for a quick lunch one day and within seconds, I wanted to leave. I couldn’t hear the questions my burrito builder was asking. The volume of the music was bad techno club level. I couldn’t believe I hadn’t noticed the volume in these ‘restaurants’ before then.

I was worried, of all the things I had to worry about, that this would be my new normal.  My neurosurgeon hadn’t heard of anyone developing this new hypersensitivity before. My neuro-oncologist hadn’t either. I like nothing more than throwing curveballs at my medical professionals.

Eventually it got better. If I’m tired, I still can’t handle multiple sources of noise at once. Music is now being played in the house – live AND recorded.  Which is good for my family’s happiness and harmony.