Saturday, September 3, 2011

Another Two Seizures Today

**warning long post **

Well this was a shock although I suppose given the circumstances it shouldn't have been.

This morning we were having a slow start to the Labor day weekend which was nice.  Karl was in bed and the children were sitting on the floor playing.  I decided that the day had to begin and was in the bathroom cleaning my teeth and then I felt the seizure start to come on. I could not talk and my face, cheeks and jaw started to spasm.  I tried to get Karl's attention but he was lost in space staring the other way. I started banging on the bathroom counter with no success, in desperation I grabbed one of the heavy candles on the counter and threw it hard in his direction.  His face was a picture:)

Then he realized what was happening and ran over. I got into the recovery position and tried to remain calm and breathe. My mouth was open and I was drooling (TMI) with my jaw and face uncontrollably spasming. Knowing the cause helped my fear level considerably and I was able to focus on breathing and relaxing. The image that I visualized was the back screen with the word "relax" in white that was displayed during my fMRI between trials.  Odd, but it seemed to work.  After a few minutes I came out of it, and my face stopped spasming.

The whole time I was aware of what was going on.  Astrid was stroking my hair and saying "its OK Mummy", Karl was holding my hand and telling me the same thing. The cat came and sat about 2 inches away from my face staring at me purring.  I think that he thought I must have caught a mouse or something.

When we had all calmed down, I spoke to the children about the tumor in my brain that the doctors are looking at and told them that this is called a seizure and will probably happen again. They were momentarily concerned but soon lost interest.

Later on Alexander said that he thought I was choking on my toothbrush as my cheeks were all puffed up.  He said it sometimes happens to him when he puts his toothbrush in his mouth sideways and cannot get it out.  That was not something that I wanted to hear at that point. Eight year old boys are so weird.

All went on as normal although of course Karl and I were very shaken up.   I called my neurologist and as it was a Saturday got through to an answering service.  He got back to me very quickly and told me to double my daily dose of Lamicatal XR.  I was taking 100mg per day and now I have to take 200mg.

My good friend Marci came over and although we talked about it intially, most of the afternoon was filled with laughter.

Later on that afternoon I was cleaning my teeth and it happened again.  Luckily I had my cell phone with me and managed to Karl call who was in another part of the house. I then got myself into the recovery position and waited for him to answer the phone. Of course I cannot speak so put the phone to my mouth hoping he would hear the gurgling, then I banged the phone on the wall. He came running and we went through the same thing again, without the cat this time. This one was not as long and I was out of it much sooner.

These are the first that I have not woken up from a dead sleep seizing so I was completely aware of the onset. Also these are the first since I am of course worried that this might mean some sort of progression or change in the tumor and also what it means for my general day to day life.

Am I never supposed to clean my teeth again???


9 comments:

  1. Katy, Katy, Katy, I am so sorry to hear of this day for you and your family. Chemo is right around the corner, though, and it will shrink or wipe out that &%%%$$$###. Barrows will figure it out, I am convinced of this. I have 2 other girlfriends who beat cancer, one at Mayo and one at Barrows, and I had the same weird and positive feelings during both of their ordeals that I have about your challenge. You are one of the coolest people I have ever met, Astrid is the pluckiest of girls, and Alexander reminds me so very much of my older son. I just KNOW this is going to have a positive outcome.

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  2. Sorry, it's Amy Dru. Still have not figured out posting.

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  3. Thank you Amy, I guessed that it was you. It is good to get survival stories and weird and positive feelings on days like this.

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  4. No you must never clean your teeth ever again :-). I find humor in the cat coming to you and purring. Aren't animals supposed to understand things on a different level than humans and know when to comfort? In all honesty I admire how you are dealing with this honestly and as a family. So often we don't involve our kids in serious situations even though it effects them. Your family unit sounds so strong and solid that I applaud you with how it's being handled. This will make you smile. Will dais good bye to Ceci in the parking lot at school this week and when we got in the car he said she's my girlfriend. I questioned that and he says "all the girls are my girlfriends, you know, Ceci, Georgia and Astrid.". Oh my...

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  5. Amy again. Plus another thing.....Barrows said your prognosis is good. My son the know-it-all resident at Cedars-Sinai said that your doctor would not give you false hope. When he said "good", he really meant "good". According to my son false hope is politically very incorrect these days, so I am so happy that your doctor said "good"!!!!!!!!!

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  6. Katy - so sorry to hear that you had to go through this today, let alone twice. Our family is thinking about you and sending all positives your way.

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  7. that really is a shit. You poor poor love. It is fun ny that Hunter thought you were having some kind of love-in though! big hugs to you my brave lovely sister xxx

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  8. Oh Katy, thinking of you this morning, so sorry this happened...glad that you are taking the next steps this week to hopefully get more control over that horrid thing. Hmmmm....maybe have Karl stand there with you each time you brush..... --Heather

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  9. Bar - I think that my cat must be a seizure cat like the seizure dogs that you hear about. So if you see me walking around with a huge fat cat on a leash, that is what it is:)

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