My horrible surgery that took the control of my left side, again, did not work!  My next MRI showed that there was still pieces of the two tumors left so my surgeon sent me to the radiation oncologist who did my gamma knife.  He suggested IMRT, which is Intensity Modulated Radiation Therapy.  Its not full brain radiation, but its more than gamma knife.  I did 28 sessions in Nov and Dec of 2009.  Each session only lasted about 5 minutes but afterwords I was extremely fatigued, I couldn’t do anything.  If I wanted to do laundry I had to do it before my treatment. Extreme fatigue wasn’t the only side effect of this treatment, my scalp became extremely sensitive and my hair fell out.

This time I knew my hair was going to fall out so it wasn’t as scary when it did, but it was as disturbing so when it started to happen I decided to just start pulling it all out and shaving my head.  Once my hair was gone my scalp wasn’t as sensitive.  Another side effect was headaches caused by swelling of the brain.  The doc put me on steroids, which I have been on for over 6 months which is something you really don’t want!  I have gained about 30 lbs, maybe more, my leg has atrophied because of the steroids and the wearing the AFO brace, and I am so weak I couldn’t go back to work right now even if I could get a job!  Plus I get dizzy if I stand for too long.  I was on 8mg of decadron and I’ve managed to come down to 5mg, I couldn’t do the normal tapering schedule because of how long I have been on them and how bad the headaches get, and I have little seizures, so I am going down 1mg every 5 to 6 weeks.  My face is so full and I am so bloated all the time I feel miserable, plus the pain meds have me constipated so I am even more miserable.

My leg seems to be doing ok though, and I think if I were actually doing my exercises I would really be able to walk better, but I have been so depressed by everything else that I have trouble motivating myself to do the exercises.  I lost my excellent health insurance a couple months back because I haven’t worked for over a year and I ran out of COBRA.  And then I ran out of unemployment and am having trouble finding ways to make money, so yeah, pretty depressed.  Waiting to find out if I qualify for the new extension for unemployment that was just passed.  Plus I sit here all day on my chair and do nothing because if I have no money to go out and I get dizzy when I try to do stuff around the apartment!

I have to wear my AFO brace to walk, unless I am upstairs using my walker.  I tried to wear a brace a foot doc gave me that laces up and straps but my ankle isn’t strong enough.  I really need to exercise it more, but like I said I only get to walk with the walker upstairs.  I have an AFO that has an articulated ankle but I haven’t been able to use it since the surgery, I don’t know why, it hurts my ankle and I don’t feel safe in it.  I’m going to keep trying it though because my ankle needs to be worked.

So we are up to date.  I only took 4mg of the steroid today and my headache was a bit worse than usual, but going to try it again tomorrow because although its a little more tingly, my foot is moving very well.  More tomorrow…