22 October 2008
Wednesday, 9:50 PM
High-Level Journal Summary: While so thankful for all the help I have been getting, I can also keep an open eye on what needs to be better going forward. This afternoon, I got a call at around 6:45 PM from my Mom saying that I need to be meeting with Dr. Patel the very next day.
I immediately cancelled, mainly since I have had a meeting scheduled during this period for about 6 months. I can understand forgetting this detail over time, but help me to put it all back together again. I need this kind of help in putting things together once again when working together on short schedules. We need a technique for not doing this again in the future.
Countdowns:
1.) Day 13 of 28 in Cycle 2 of the Avastin + Enzastaurin Clinical Trial at the National Institutes of Health (NIH).
2.) A chance to see Dr. Patel again on 10/23/08, if a time can be found in the morning.
2008 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 40 days ago. Today, we STOPPED using 150 mg of Trileptal every day, just as a measure of protection.
2.) In 2008, I have had 80 SPS's in 296 days. This is an average of 1 SPS every 3.7 days, exactly.
Actual Journal: It was exactly a long time ago that I was dispersed from taking Trileptal at the same time I was also taking Keppra. These are both drugs that help to stop the bleeding that comes from anti-seizure drugs. We have been quite fearful of doing so, just because of the risk of doing so had real stress. Today, we went ahead and did it.
Good timing
In the course of doing this, we go in with a great record. I have gone for a total of 40 days in a row with no seizures. That is close to a record. In fact, I am in place for second place in all time. Why would I want to do all this during such a streak? Our entire family and all doctors have discussed this in detail. Who cares about a great record? None of us. We do not want to blow up this record, that is all.
What we want to do is not destroy this record. That should be pretty easy to watch and observe. If things start to move in the wrong directions, we should be able to spot that easily. It would be like getting SPS's the way I did last year at this time. Had I seen that again this fall, I would have jumped like a cat as I did this year. It was clearly a topic for this year's 12/19/07 year's topic, but it jumped to the top of the page before we could even get started. It was a ball-breaker.
Making us true believers
It was from 12/19/07 that we all became to true believers in our family. We are no longer sorry for this. It has taught us to learn the deadly things quickly and sturdily. We sort of missed off on that last item. If we had let this last item slip through our cracks at the end, we would have been quite pissed off with the entire situation. How can we make up for what we missed during this process? It would be so difficult to do in a situation where writing is not possible.
Ever since 12/19/07, we have been long-lasting conservatives. It is true. For people who know my family, just watch my parents well. They watch my actions so closely and ask so many questions based upon what they see. The bottom line? They come to quick family conclusions based upon what they happen to see in one weekend. That's it.
I observed this happening over the weekend when I was in New York, NY with my Dad. I heard him say that he was watching this tendency, and when I saw it come out of his mouth in less than 24 hours of being together, I was not happy. While I can understand his need to follow directions, my Dad went to the other end of the extreme to make a conclusion.
I had a friend who went out of town this weekend, so I told him that I would be using his worldclass art work at weird times. I just wanted to have it available to me to sleep upon whenever it was needed. Pretty simple stuff. My Dad saw this and jumped to conclusions without talking to me, first. Fortunately, our few minutes of conversation at the doctor's office seemed to clean all this up.
Still, this just made me bullshit, especially since Dr. Pacia and I have such a long-time relationship that has already been built. He did not need to be meeting my Dad for the first time with this kind of feedback. Dr. Pacia needed to step around it, which he managed to do quite kindly.
Conclusion
This is a great example of why it is critical to keep in close contact with each person who examines me closely. Do they need to report on me again sometime soon? If so, when? Are things set up again so that we can meet with enough time to do this again? If not, how should things be rectified? And what I am seeing here is making sure that folks understand my local commitments so these things can get shuffled into the overall mix.
Today, my Mom tried scheduling my 3 PM for this Thursday. I just want to calmly tell her that I cannot meet in this timeframe, and I told her the reason for the last time in 6 months. It was that simple. My Mom finally broke down and said that she would find a better time for us all to get together again, especially when she could not tell me the reason for why we all needed to meet so soon again after our last meeting.
