I fight for a cure for me & our amazing children❤️

Tuesday, January 17, 2017

Clinical trial delayed again!

Well maybe I'm just not supposed to be in this Roche/Genentech clinical trial! Is God trying to tell me something?  My blood work came back and my thyroid is still out of range. UGH!!  The clock starts over and now I won't 'potentially' qualify until late April, which puts the start date of infusions to May.

Hmmm... I guess I'm ok with that. I have given up control of this and am doing my best to just sit tight and see what happens. Since I have to start over on a lower dose, perhaps I can start on Namenda tomorrow too!  My local neurologist recommended it at my visit earlier this month but at that point I didn't want to push out the start date of the trial any longer than was needed. Now I'm starting to realize that one month difference is no big deal in the long run.

I should know more soon! If I can start on Namenda, I hope there are no side effects. I'm already constantly fighting headaches and am pretty low energy and sleepy.  I have a hard time falling asleep no matter how late I stay up. Meditation and music have helped me but it still takes at least an hour for me to fade into a decent sleep.  I'm active during the day and am in good spirits most of the time. But some days I just want to sit and read and sleep and knit if I can.  It's all part of my new 'normal' so I try not to judge myself.

So we shall see what's next! Taking things one day at a time is helpful. I'm looking forward to spending the weekend in Sedona and having some quality time with my girlfriends.  I'm doing my best to cherish every moment and be at peace in my new journey.

Love and peace and blessings to you all💜

1 comment:

  1. I know you never give up! Yes sometimes God works in strange ways. You are my hero dear Pam!