So Thurs. went pretty well  It wasn't a big appointment in the way of things as it was just blood work, vital's etc... but I did get the meet with the doctor and we review everything I have going on (symptom wise) and it appears I have the actual drug XL184.  Pretty much everything I am feeling is an actual side effect.  it's so funny to have sat there and see her just as happy as we are that I feel like crap.  The next two weeks will really tell the story, things should get worse pain wise and then the pain will let us but I'll look worse - best way to describe is that everything starts internally and then works it way out so in the next couple weeks I should actually have the rashes and possible start the hair loss etc...

My blood pressure on Thursday was pretty high (that's not normal for me) so they have to keep an extra eye on it, this is one of the items that can get me pulled from the study but hopefully it will go back down or stay stable.  I go back on the 22nd and that appointment will be an all day one, they will do the EKG's and bloodwork every 2 hours for a total of 6 hours.  The drug can cause heart problems so that's why they do this type of visit every other appointment.

overall I feel like crap but I'm happy for that.  My throat is extremely painful, it's getting harder to find things to eat and drink (for the most part everything feels like it's burning the inside of my mouth and if it doesn't feel like that, it's hard for me to swallow it).  I have a "magic mouthwash" but it really doesn't help much but it's better than nothing.  I get tired even more than before, I get out of breath more often, I'm bruising more, hands and feet feel tinggles all day and for the first time in my life I have bad skin.  I am actually looking forward to maybe losing my hair - maybe I'll be one of the people that lose their hair but when it grows back it grows back in totally different than before like THICK and/or CURLY (haha).

Friends of ours who will be at the benefit, if my hair is starting to fall out by then are planning to do a barber chair and shave anyone's head for a donation - cute right :).  I told them if my starts I'll be the first one in line and I will shave it off that night.  

Not much else going on, just trying to relax, and do somethings will I still can esp. spending time with my family and friends. 

Thank you everyone for your continued prayers and support.  I hope you all like reading the posts and that they are not too much.  Add comments, tell me if I'm giving too much or not enough what you like to hear etc...

Love & Peace

Sue