Wednesday, 11:05 PM
High-Level Journal Summary: A day of testing at NIH for the Avastin + Enzastaurin Clinical Trial. Nothing was scheduled at the beginning of the day, but that did not stop us from getting 4 major tests (plus all paperwork) completed.
The last tests are on 8/28/08, so it is possible that this clinical trial begins on 8/29/08. However, my White Blood Count (WBC) is a little low. A decision about my blood levels will have to be made before we can even start. It is possible that we need to get my WBC count up before we can start. Answers to such questions will be addressed on Thursday, 8/28/08.
No matter what, aggressive progress was made today. Amen.
Countdowns:
1.) On 8/28/08, go to NIH and get a CT Scan and a PET Scan, all in preparation for the Avastin + Enzastaurin Clinical Trial.
2.) On 8/28/08, be part of a video taping for a television special on brain cancer, per my 8/18/08 online journal entry. This should be fascinating to be a part of tomorrow evening.
2008 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 9 days ago.
2.) In 2008, I have had 77 SPS's in 240 days. This is an average of 1 SPS every 3.1 days.
Actual Journal: It is late. I am tired. But we sure got a lot done today. Here is a quick summary of what was done at the National Institutes of Health today, just so that the important (and expedited) path to the Avastin + Enzastaurin Clinical Trial remains up-to-date.
1.) Updated medical records.
3.5 years of medical notes, creatively being brought into NIH.
So that medical records could be cleared quickly, I brought all medical records with me. It is a sizeable number of papers. NIH needed medical records from others sources which confirm the major events which have happened so far. For credibility, they could not report only from their records. At least two medical sources are needed. We got through it all in about 30 minutes.
2.) Met brain cancer friends.
This was an unexpected treat, but I met 3 sets of friends who are dealing with brain cancer. They happened to be there to see Dr. Fine today. A mother and son were there, and we had dinner together (along with my Mom) just over 1 year ago. This son graduated from the Naval Academy with his GBM brain tumor and is apparently doing great right now. And then the 2 couples below, both of whom I know from the Inova Brain Tumor Support Group.
Kristi, Bob, David, Laura, and Mike. Kristi, David, and Mike are all fighting brain cancer right now.
There was also the wonderful chance to meet other brain cancer patients, some of whom already read 38 Lemon and know all about it. That really opened up the door to immediate, on-the-same-page conversation.
3.) Got in 4 tests today.
My nurse was able to get 4 tests immediately scheduled for me today. These were as follows:
• Hematology and urinalysis
• EKG
• Echocardiogram
• Chest X-Ray.
I slipped in a nap during this period, too. It was only 1.5 hours, but it kept me somewhat awake by mid-afternoon. I had to sleep when I got home, but I can still feel the impact of not getting enough sleep.
4.) Scheduled last tests for 8/28/08.
My nurse Julie was also able to juggle things and get 2 important tests scheduled for Thursday, 8/28/08. There are the CT Scan and the PET Scan, which was originally scheduled for next Tuesday (9/2/08). This allows the clinical trial to potentially start earlier now.
5.) Learned about an issue that could delay the clinical trial.
My White Blood Cells count is lower than their standard for me to start this clinical trial. Mine is currently 2.3 K/uL, while the minimum standard is 3.0 K/uL. To help understand my WBC count, they asked for reports from the last 3 hematology reports. I did better than that. I provided the data from the last 97 hematology reports. There is ranking to show which are the highest and the lowest readings, and the data is neatly graphed, as shared every few weeks on 38 Lemon.
This reading shows how we have done with White Blood Cells from 10/29/05 through 8/17/08. Perhaps it will give them a better idea of how my body reacts to chemotherapy over time. Perhaps that will help the decision-making process. Either that or I get a Neulasta shot to raise these White Blood Cell counts.
So tired
I am wiped out. Was today worth it? Heck yah. We are doing everything possible to get started on this clinical trial ASAP. I could theoretically start this whole process on Friday now (8/29/08), but it seems to depend on my blood cell counts and what we do about them. We will learn more on Thursday about how to solve issues and when the clinical trial would start.
