12 September 2008
Friday, 10:15 PM
High-Level Journal Summary: I am beat. After 12 hours at the National Institutes of Health, I left at 6:30 AM and got back at 6:30 PM. 12 hours was a long enough time to be there in a single day.
I passed all tests today. All I can do is give a huge thank you, wondering how we were so lucky to get this great circumstance. Yes, I am amazingly lucky, but I will take it in fashion. As of today, the Avastin + Enzastaurin Clinical Trial is officially underway.
Countdowns:
1.) Today, I had to redo several important tests which ran out this week. Phlebotomy, Echocardiogram, EKG, CT Scan, OP-12 (a long check-up with my CRNP in room 12), a 1.5 hour nap, and finally the Avastin + Enzastaurin Infusion, which will last at least 90 minutes this time around. Things are officially underway at this point.
2.) Once the above tests are successfully completed, Day 1 of 28 in Cycle 1 of the Avastin + Enzastaurin Clinical Trial at the National Institutes of Health (NIH).
2008 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was today. It lasted for 60-seconds and was light in strength. It was at 8:15 PM, during dinner.
2.) In 2008, I have had 80 SPS's in 256 days. This is an average of 1 SPS every 3.2 days (exactly).
Actual Journal: I was at the National Institutes of Health at 7 AM. I had my pathology, echocardiogram, EKG, CT Scan, OP-12 meeting (which is a meeting with my CRNP Cheryl Royce), a 1.5 hour nap, and a meeting with the person who administered all my drugs this afternoon. I'm talking, it was a jam packed day. Some of these tests expired earlier this week, so we had to redo them again this week. There is no way around it, at this point.
Once all these test were completed, it was a matter of getting these things pulled together. It is pretty amazing thing to consider, though. These little boxes which were going to be handled externally are now being handled by other people and no longer by me.
That is an amazing thing, to be certain. All because of a that 0.07 in White Blood Cell (WBC) counts that we counted this week. 0.07, and that is it. I really can't believe it. How many dollars is this going to save me? It is going to save me a great deal, without any dollars having to do things like putting them on the table to make it happen. I think I need to just shut up and enjoy the moment.
Good things from today
I wish I could I just simply adjust to all these changes in a heartbeat, but this is not something I was ready to adjust to this quickly. It all happened this quickly, and I am only thankful for all the good things which have come from it all.
The only think I can do at this time is give thanks for what we have and give thanks for everything that has added up in such a little time. For tonight, that means going to bed early. I just need to practice going to bed earlier.
