Tuesday, 9:50 PM
High-Level Journal Summary: Feeling wiped out from 2.25 hours of Speech-Language Pathology testing this morning at NIH. It was so intense that it made me this tired. I got about 3 hours of sleep before my MRI later that day, but this sleep was not consecutive, was not deep enough, was not in a bed, and had interruptions. As a result, I need to get to bed early this evening.
The good news is that I got some informal feedback that my cognitive skills are still being maintained, despite GBM brain cancer. And one of the items helping to maintain this status? Writing in 38 Lemon so often. While being a thinking pad for me, it is widely seen as exercise for the brain. As such, it only helps me as we progress.
Countdowns:
1.) Day 22 of 28 in Cycle 6 of Carboplatin + VP-16 chemotherapy.
2.) On 8/20/08, review my MRI with Dr. Fine. A determination will be made at this time about whether or not to extend to a Cycle 7 and Cycle 8 of Carboplatin + VP-16 Chemotherapy. This will be based on the latest data and Dr. Fine's medical opinion.
3.) On 8/22/08, get my fourth annual Neuropsychology Testing at NIH with Dr. Edythe Wiggs. Cheryl Royce, the lead CRNP for Dr. Howard A. Fine, requested a phone call about this event ASAP.
2008 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was yesterday.
2.) In 2008, I have had 77 SPS's in 232 days. This is an average of 1 SPS every 3.0 days.
Actual Journal: One thing I don't think I have done to date is share a photo of my NIH Clinical/Research Speech-Language Pathologist, Maia Magder. She does excellent work in her specialty, as I was reminded today in 2.25 hours of tough testing. After it was all over, you see her glee at putting me through all this rigor in this photo.
Maia Magder, M.S., CCC-SLP, of the Speech Pathology Section of NIH.
I'm just teasing. Maia does an excellent job of delivering these tests in ways that are understandable. This is important work. She puts me in the best position to respond with a full understanding of what is expected. I am not left lost before we even begin a test. Believe it or not, this takes a unique skill which Maia clearly possesses. Kudos!
Wiped out
That 2.25 hour mental marathon just wiped me out this morning. Talk about a task that is so intense that it makes me physically tired. Wow. I went to my 1/16/08 radiation friends and slept on a special chair they have. They give me access to this comfortable, reclinable chair every time I visit. Lots of hugs and some reasonable crash time.
I slept there for about 2 hours, waking in time for my 3 PM MRI. Then, I slept for another hour during my MRI. When I went for my 1.5 hour walk at 6 PM, I was still wiped out from this morning. My goal right now is to get to bed as quickly as possible. I just need to recover from it all.
Strange how mental energy of this caliber can take so much out of me. I probably needed another 1.5 hours of sleep this afternoon. That means getting to bed an extra 1.5 hours early this evening.
The net of today
Maia will be working to score me over the next week. This is the 4th year of data, so we can really compare from year to year. But some informal feedback from Maia is that I still have strong cognitive ability. When I saw my weaknesses, I would point them out and tell her what I was doing to compensate. Maia could see these skills in action and acknowledged them happening. She told me the following:
So true that all of this writing, recounting, remembering, analyzing is keeping you cognitively pumped. Using your mental capacity to its fullest is the way to go for you.I am very interested in seeing the final results and comparing them to the previous 3 years. How much have they changed? Are they stable? Have they dropped?
The value of 38 Lemon
One thing that Maia pointed out is the value of 38 Lemon. She sees this as exercise for the brain, which I have pointed out to myself in the past. I agree. This forces me to think every single night. To use my words, this is like when I going for a 1.5 hour walk or when I conduct an upper body workout every other day. All this adds up and keeps me in shape, this time with my brain. It's not a linear relationship, but it does make a noticeable difference.
