10 October 2008
Friday, 9:05 PM
High-Level Journal Summary: A sharp analysis of how things went today at the National Institutes of Health (NIH). While I felt prepared for this meeting, my number one priority was listening.
While I got lots of feedback, I also got even more questions about the overall results from today. While most information still needs to be gathered, I feel that I cannot fully answer that question until the middle of the week next week, when the results from the PET Scan are fully explored. What a weird, strange, sort of twisted mystery.
Countdowns:
1.) Day 1 of 28 in Cycle 2 of the Avastin + Enzastaurin Clinical Trial at the National Institutes of Health (NIH).
2008 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 28 days ago.
2.) In 2008, I have had 80 SPS's in 284 days. This is an average of 1 SPS every 3.5 days.
Actual Journal: For the past 2 days in a row, I came out of some big meetings at the National Institutes of Health (NIH). I would say that I did a decent job of preparing for these meetings, especially since I closely examined the traditional markers we followed in the past few months. At least I could listen very carefully to Dr. Howard A. Fine, my neuro-oncologist. I was able to listen to him with a far more informed perspective on how things went.
So, where are we?
This is still a good question. I talked with Dr. Fine, and at the end of my listening, he talked about getting a new PET Scan at the end of this cycle. What? A new PET Scan? That is one of those items I struggled so hard to get on 10/9/08. Didn’t he get a copy of it? Apparently not just yet. He was surprised to get this news and is going to study it over the next coming week. This will tell him much about what we examined today.
The issue is that we are looking at materials that could be so many things at this phase of the clinical trial. Without having a certain amount of PET Scan data, Dr. Fine would be in a phase which would not allow him to make an accurate assessment of what is happening in my brain. In 28 days, we have done a lot of damage to tumors #3 and #4. What we are seeing now is an area which needs attention. The only concern is that this area could easily be good, just as well as bad.
Dr. Fine is in a position to say that he is "cautiously optimistic" about the PET Scan results. It seems that it takes some time to get results from the PET Scan. I hope that I can get the results this week and try to nail this brain tumor down a little bit more. At this time, Dr. Fine wants to know I am doing based on hard data. If I were not doing as well as I am doing, then we would be having daily problems.
Hard to believe
I find all this a bit hard to believe after 2 days in a row without great sleep, I must say. I have not had long bits of rest all in a row since Wednesday, and I feel it. If I gave myself all that I needed every single day, perhaps I would feel differently. That is when I could turn the corner about how things are going and how I am doing.
I must say, this is a strange place to be with a darker packaging of things than Dr. Fine and his entire team. Yes, I can feel better when I take very deep care of my body every single day, but when I do not do so? Ouch. That is when I feel these tumors in weak ways that I do not want to feel.
Where next?
I am headed down to Florida on a US Airways flight right now that I really do not want to be on. Perhaps having some time in Florida will help for a few days. Perhaps. But there is an even bigger part of me which says that I need to have time to myself to recover from 2 days of health checkups.
I wonder if I will even have a chance to catch up with myself in this way. I wonder if I can teach myself to do these things again these days. I feel I need it, but I feel I cannot afford it. How do I get around situations such as these?
