18 December 2007
Tuesday, 11:05 PM
High-Level Journal Summary: My latest health status report for my 12/19/07 meeting with Dr. Howard Fine and his team at the National Cancer Institute.
There are a number of new issues from the past two months which will be addressed, from a week-long headache to Simple Partial Seizures with olfactory auras. However, all that seems relatively minor compared to the big question that will be addressed.
The 12/18/07 MRI results will provide critical data about how my 28 cycles of chemotherapy are progressing. Will this data point the way towards continued chemo or not? That question seems to get bigger and bigger the longer we go down this path.
Countdowns:
1.) Day 23 of 28 in my 28th 5/23 Temodar chemotherapy cycle.
2.) Meet with Dr. Howard Fine on 12/19/07 at 5 PM (new time) to review my 12/18/07 Perfusion MRI.
2007 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was today. I had a total of 5 more. They were as follows:
• At 2:30 AM, I had a 45 second olfactory aura SPS that woke me from sleep.
• At 5:30 PM, I had a 60 second light SPS after 30 minutes of walking. I stopped walking until it passed. I was glad that it did not escalate. I was worried that it might do so.
• At 6 PM, I had a 60 second heavy SPS after 60 minutes of walking. I was in the middle of walking up a steep hill. I got down on my knees and was drooling, but I did not have to take Ativan emergency anti-seizure medication since it ended at the 60 second mark. I was on a very public street, but cars just drove past as all this was happening.
• At 7:30 PM, I had a 60 second light SPS while eating dinner.
• At 8:45 PM, I had a 60 second heavy SPS while on my computer. I immediately took 0.5 mg of Ativan since a pattern of SPS's had been established this evening. This SPS was very strong, caused a lot of drooling, and caused me to make lots of sound as I tried to chase this thing away.
2.) In 2007, I have had 190 SPS's in 352 days. This is an average of 1 SPS every 1.9 days.
Actual Journal: I am extremely tired. Why? First, I had a poor night of sleep. Next, I went to NIH this morning to get my MRI. I left home at 8 AM and got back at 1:20 PM. In the world of chemotherapy (as I know it), that is a lot of time to dedicate to a single activity. I was beat.
Tomorrow (Wednesday) is going to a big day. This is when we read my 12/18/07 MRI and get the latest results regarding my chemotherapy treatment. What will the answer be? Good news or bad? The answer is completely out of my control at this point. I've done all I could do to be prepared for today's MRI. The data has been captured and it will be read within 24 hours.
In the meantime, I need to finish preparing for the Wednesday meeting with Dr. Howard Fine. In that spirit, here is my health status report so that our meeting can run efficiently. This has all my seizure data, health updates, and list of current questions.
12/18/07 health update report
1.) My number one thing I do when I come to NIH/NCI/NOB is listen. I want to listen to their analysis of my current MRI. Based on the report from our last meeting, there will be at least a 29th and 30th cycle of Temodar chemotherapy. Is this still an opinion that they can medically justify? If so, why? If not, why?
2.) On 12/13/07, I analyzed all my Simple Partial Seizure (SPS) data for 2007. On of the key things to note is the number of seizures per month that I have had in the second half of 2007:
• July - 2
• August - 25
• September - 9
• October - 11
• November - 57
• December - 57 (to date).
3.) We last met at NIH on 10/17/07. Since then, I have had a new type of SPS. It is an SPS that has an olfactory aura. I can actually smell something when this kind of SPS is coming. My first olfactory aura was on 11/12/07. This is a new thing for me, just like a "rolling seizure" was new to me this past August. I do not have these olfactory aura SPS's all the time, but they are now in the repertoire, if you will.
4.) There is some suspicion that these olfactory aura SPS's may actually be "reflex seizures" since they often happen in the midst of various strong smells. For example, when I smell a fire or perfume, I can get the "olfactory aura smell." More needs to be known before this determination can be made, though.
5.) I may have to increase my seizure medication soon, but we have not done so yet. We are still trying to observe what is happening. My epileptologist and neurologist do not want to react too quickly. I have had some very heavy SPS's, but none have been focal/motor seizures or grand mal seizures. If we increase my medication, it would be by 150 mg of Trileptal per day.
6.) My fatigue from chemotherapy continues to be cumulative. It has been a slow process over the past two years, but I can feel it. For example, I feel the strong impact of chemo anywhere between Day 2 and Day 8 of each chemo cycle. It varies. I must also sleep every single afternoon, for at least a few hours. No changes there.
7.) Per 11/16/07, I had a headache for an entire week. Local oncologist Dr. Dipti Patel determined that these headaches were muscular and not inter-cranial. She called them "partial tension headaches." The back of my neck was very tight, so I got an hour of physical therapy. I also stopped using two pillows in bed. I now use a single pillow. The physical therapy and use of a single pillow both made an immediate difference. After a week of this headache, it went away within 24 hours of these simultaneous changes.
8.) There has been a dip in my 2007 Speech-Language Pathology test results. Per my 12/3/07 online journal entry, could this be related to "chemobrain?" Is this something Dr. Fine observes in his brain cancer patients who take Temodar chemotherapy? Does this have a long-term impact or is this something that just hits during chemo (and goes away afterwards)?
9.) Has a publication been released regarding GMDI? If so, where can I get a copy?
10.) May I get a copy of my "GMDI Pathology Report?" This was supposed to be sent to me after we last met, but I never got a copy of it. This will contain the deep-dive data about my brain tumor DNA that is all a part of the Glioma Molecular Diagnostic Initiative.
11.) I need to select my Medicare - Part D coverage by 12/31/07. Initial research into my Medicare - Part D coverage indicates that Temodar chemotherapy and Kytril anti-nausea medication are NOT covered. Currently, I have a secondary health care coverage that is part of a group plan, but that expires at the end of February 2008. Have they observed other Medicare patients who have not had coverage of Temodar chemotherapy? If so, what is done in such situations? Their "front-line perspective" would be helpful.
12.) How close do they think we are to making a decision about when it may be the right time to stop taking chemotherapy? I ask only because I have not been pursuing this questioning with other doctors. The positive results from 10/17/07 gave me enough information to set that issue on the back burner for the past two months. Do I need to move this issue from the back burner to the front burner again?
Time for bed
Okay, I am totally beat. I've got to get some great sleep. I woke every few hours last night. I woke at 1:30 AM, 2:30 AM, 4:30 AM, 5:30 AM, and then got up at 6:30 AM. I suppose that tells the story that I was anxious to get my MRI. I wanted to get it before I had any more heavy SPS's. So, I need to make up for such a relative lack of quality rest in the past 24 hours.
I also need to have great fuel for tomorrow. I am finding that these meetings more emotionally charged the longer I take my chemotherapy. I want to get another clean pass for continued chemotherapy, yet it is something I cannot really control this evening. The best I can do tonight is just get a great night of sleep.
