On the Move

So tomorrow I leave for the D to try another round of IVIG. I'm excited that it's going to speed up my recovery from Guillain Barre Syndrome which I'm now making noticeable progress, yee haww! My fingers are firing around my keyboard as I type this and I actually cut my nails today with nail clippers (this is gross but the last month plus I've been biting them). My legs are getting stronger too and I've been trying to walk every day.

I'll be in Detroit for 4 days then Sunday I leave for New York for a 9 day stay. I'll be doing the NYC trip solo which I'm confident about since I pulled it off last time while I was still pretty much disabled. I at least have my hands this time which should be a huge help.

I'm admittedly nervous however starting a new clinical trial. I feel blessed to have the opportunity to try an experimental drug don't get me wrong. That said, it is a little (well, a lot) unsettling to be a subject of an "experiment". There have been 10 people in the world so far that have done this trial and one of them who is a friend of mine spent a significant amount of time in the hospital during and after she quit the trial. While it hasn't been proven that the SAHA/Niacinamide caused the difficulties, it wasn't disproven to my knowledge either. I should point out that SAHA has been around for a while and is actually approved for some other cancers. The unknown is when it's combined with the high dose Niacinamide. Dr. O emphasises that Niacinamide is basically a vitamin (B3) so it has to be harmless right?

It's still very fresh on my mind what the last trial drug did to me (although can't be proven either). Ultimately, I know that everything I do from here on out to control this disease is going to involve risk and carry side effects. I have no choice unfortunately... If I do nothing, I know what will happen and it's not good.

All I can do is hope that I get some results from the SAHA/Niacinamide (and future treatments) and the side effects are manageable.

Of course I will continue (as usual) to try and enjoy every day the best I can while I can. I pick my spots a little more now but life is good... I've got big plans for the summer and I'm saying prayers, keeping my fingers crossed, watching my karma, eating well, exercising -- whatever I can do to get some good results here soon...

Thanks again to my friends and family that have shown support :)