Hard to believe... We're leaving for St. Louis in about 10 or so days.  A month ago, this time couldn't get her soon enough.  I've packed on enough weight from the steroids to make me miserable.  I can't seem to stay out of the bathroom, and I'm still taking pain meds (My surgeon finally gave me some!).  The steroids are the worst of the trouble... I cannot wait to get off of them!  5 more weeks...that's it and I should be COMPLETELY off them!

Here's the game plan...

I have to sign and mail my consent on Monday to the researcher.  From there, she will fax me my "diaries."  I have to keep daily diaries.  I'm sure it's food, bowel pattern, meds, etc.  Basic stuff.  It's going to be difficult to keep up with that, but I have to be honest.. I'm getting 2 years of FREE medication and all I have to do is keep a diary?  I cannot complain.  Not when my past doses of Remicade were something like $17,000 PER infusion.  Yeah, that does a number on your insurance maximum...

So, on Oct 21st, we're headed to St. Louis.  That afternoon, I have to do the following:
EKG, Blood Sample, Urine Sample, Stool Sample, TB test, X-ray.

I had my colonoscopy in March, so they just pulled the records... Then, they will ship all this information out Tuesday evening and have it back hopefully Friday morning and we'll get the infusion Friday afternoon and then either head back Friday night or Saturday sometime.  We're not sure exactly when we're coming back.  My mom mentioned maybe staying an extra day just so if I have a reaction, we're right by the hospital and not en route. 

Again, we won't know for 3 months if I'm getting the medication or the placebo.  But, since I'll be weaning off steroids the DAY I start infusions (I'll wean by 10mg - So, I'm at 30mg - will be off steroids 3 weeks from the Friday I start the study), I'm pretty certain "I'll" know if I've got the drug or not by around week 2 when I get down to 10mg.  That's when it hit last time.  I've met someone on a message board receiving the drug and they weren't sure it was working either, but then they said aroudn week 2, they started to feel better.  So, it might be a miracle drug, but it might be a slow-working one too.  Only time will tell!  If I do get ill, (either from receiving the placebo or simply the drug not working on me), the doc can pull my chart and see if I'm getting the drug or not and then offer me the drug.  So, I'm hopeful, nervous, but hopeful. 

It might be a rough few months still, but I'm keeping everything crossed that this will stabalize me.  Anything is worth a shot right now as there isn't much left in the cards for me to do!

WIsh me luck and I'll be sure to keep everyone posted on my progress!!