Wednesday, May 29, 2013

It is offical...I have been kicked off my trial drug

I am kind of in shock - kind of not - kind of ok - kind of not ok???

I was officially kicked off my BSI trail drug yesterday.

I feel a few things here but am still wrapping my head around this.

On one hand - I am scared - of course. 

I feel like BSI has kept my "body" clean since I started it in September, 2011. I say "body" because I don't mean my brain included with this.

The BSI has never been able to cross the blood brain barrier.

BSI effects are known to me.

I knew I would get it every Monday and Thursday - that was my job.  I would go to treatment 2 times a week, I had my routine, I knew when I would and wouldn't feel good and I knew the BSI was working.

On the other hand, I was/am ready for a change...on my levels.

I was tired of going 2 times a week.

I was tired of being tired - but now I realize that that tired might be NOTHING compared to my new tired - only time can tell that.

I was tired of being tied to that schedule - but now I am thinking what in the hell am I going to do without that schedule?

I was tired of not being to go out of town for longer periods of time.

But I knew - I knew what I was going to feel like.

I do feel in my heart it will be good - it all is good but that doesn't mean I am not scared of the unknown.

My schedule for the next 2 weeks are a little crazy, but we have come to realize this is life and just like every life...just like everyone else - all we can do is live in the moment we are in - or that is my hope for me at least.

May 29 - I go get fitted with my radiation mask.
May 31 - I get my head stiches out - I can't believe it has only been 2 weeks since my 3rd brain surgery.
June 3 - Ian started karate camp...which I think is going to be GREAT fun for him!
June 6 - see my brain chemo to see what plan is
June 7 - see Dr H

And sometime within all the above, I will be getting radiation again - I should find that out today what that schedule is.

Oh yeah - we also are redoing our new house!! and hope to move in about a month!?!?
I guess no time like the present?!?!

Please pray that all works seamlessly according to His plan.

I can't plan the next steps because I have no idea what they are and it is kind of (of A LOT!) freaking me out.

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