11 January 2008
Friday, 11:00 PM
High-Level Journal Summary: A whole host of things which happened today which were not planned at all just 24 hours ago. What could have been so urgent? Getting even further ahead of the curve with some of the best doctors in the world, especially following the fact that I had two post-surgical (i.e., post-hospital) hemorrhages earlier this week -- items which have the power to kill patients.
How does all this progress happen? Having caregivers who know how to push harder than just about anyone I have seen. As a result of this type of action, I had another MRI and met with Dr. Howard A. Fine at NCI yet again. Had we not done this today at final hours, it would have been at least until next Wednesday before such meetings could have taken place.
As such, these were even more critical and informing meetings. It provides 5 extra days of timing to get centered and focused upon what truly matters at an urgent time.
Countdowns:
1.) 5 days until radiation begins at the National Cancer Institute (NCI).
2.) "Simulation" work at NCI on 1/14/08 to get my screen constructed for radiation. This will be a several hour process.
3.) Begin 6 weeks of radiation and chemotherapy on 1/16/08 (Wednesday). My 12/27/07 surgical scar tissue must be healed and some swelling must have gone done by then. Once that happens, a photon beam (i.e., NOT a proton beam) will be used to apply this radiation. One other critical detail is that this photon radiation will be applied twice per day, 6 hours apart. The chemotherapy will be applied as a "radiation sensitizer," helping the overall effectiveness.
2008 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 4 days ago. I had a total of 7 SPS's in 2008 so far. SPS's have decreased enough so that my epileptologist, Dr. Steven V. Pacia, ordered 3 (instead of 4) Phenobarbital pills per day. Each pill is 32.4 mg of Phenobarbital, which is and old and tiring anti-seizure medication. We will try this new dosage for some time to see the overall number of my SPS's decrease, as desired.
Actual Journal: So many things happened today that were not planned in the morning. Why? While I rest and take proper care of my body, my caregivers are going full throttle. I mean full throttle. They are doing everything in their realistic capacity to reach out to the proper resources for worthwhile, informative, directive information on what to do next.
The bottom line is that we are getting a clearer and more expedited path on what to do next, why it makes sense, and what is still left uncertain with only 5 days before radiation is scheduled to take place.
New stuff today
Here is the quick list of things that literally packed the day.
1.) At 2 PM, my Mom and Dad picked me up at my home in my car. Being ever so fortunate, we only had to drive 20 minutes to get to the National Institutes of Health (NIH) from my home. That is called a fortunate commute, for which we can only give thanks.
2.) At 2:30 PM, I immediately went to phlebotomy to get my Creatinine level checked. Why? Per my 8/1/07 online journal entry, my kidney function now needs to be checked in order to take the contrast agent used during a Perfusion MRI, just to ensure that I can safely handle this contrast agent.
3.) At 4:15 PM, I got another MRI at the National Cancer Institute (NCI). The reason? There were actually two reasons. The first was to compare my 1/9/08 MRI from NYU to today's 1/11/08 MRI from NCI. Have they changed much? Or, have they remained fairly stable in just two days? The second reason for this MRI was to baseline all my MRI data at NCI, which is a smart and best practice prior to 6 weeks of intense and continued radiation.
4.) At 6:15 PM, I was the last patient of the day for my neuro-oncologist Dr. Howard A. Fine and his team. The purpose? It was primarily to review the MRI that was just taken and to see where we are at this very moment. While the Branch Chief of the Radiation Oncology Department, Dr. Kevin Camphausen, will direct my radiation over those 6 weeks, Dr. Camphausen and Dr. Fine have a close working relationship. So, making sure that the two of them are on the same page is critical. That is much of what happened during today's meeting, even though only Dr. Fine was the only Branch Chief in attendance with me.
5.) I asked a whole host of questions today, some important enough to note, some of which can be ignored for the moment. The most important question had to do with a major medical event which happened on 1/8/08 (Tuesday) at the very end of the Inova Brain Tumor Support Group Meeting. I was just finishing my presentation to the group on my latest health when I had a heavy SPS (Simple Partial Seizure). I had to immediately excuse myself from the room. I was followed out of the room by several professionals.
6.) The context for this SPS is that I had stopped taking Decadron just 48 hours earlier at the schedule of Dr. Patrick J. Kelly, my neurosurgeon. This quickly turned out to be premature in my situation. As a result, I have been immediately put back on Decadron, which helps to reduce swelling after brain surgery.
7.) It has taken several days to recover from this episode. Why? Because my skull is a closed space, and there is no extra room for the swelling that comes about when there is no Decadron to reduce the swelling. The swelling will all go away, but it will take many weeks -- perhaps up to 6 weeks total.
8.) It have been a bit "woozie" for the past few days, but I can slowly see the cognitive improvements over the past few days. It has been a very strange process. This is one of the things which I cannot control in life. It happened, and we are dealing with it as best as we can, watching it extremely closely.
9.) I will get a CT Scan on Monday, which will give a 2-dimensional view of my brain. Why do this? Because the CT Scan can reveal things within 2 weeks that can no longer be seen on an MRI 6 months later. Thus, this CT Scan tool is powerful and worth the effort. This CT Scan will be taken on 1/14/08 and is already scheduled at NCI.
10.) If I have ANY issues at all going forward -- no matter what -- my first objective should ALWAYS be to get to an Emergency Room (ER) as quickly as possible, without exception. This was an emphatic statement by Dr. Howard A. Fine.
Time for bed
I can feel myself fading off for bed once again. I fall asleep so much more quickly these days after my 12/27/07 brain surgery. My body is still very much in recovery mode, as would be the case for each of us in similar circumstances. There have been several large surprises this week, all of which I am trying to respond to this week.
• Item #1: I have a glioblastoma.
• Item #2: I need to fight the hardest I have ever fought in my life.
• Item #3: I had two total hemorrhages this week. We do not know when they started or stopped. I only know for sure that I felt the major impact at the end of the Inova Brain Tumor Brain Support Group Meeting when I had one of my strongest SPS's ever. I was at the point where I needed to actually be pushed by wheelchair into the Amtrak train station an hour later so I could return to see Dr. Patrick J. Kelly, my neurosurgeon, once again.
• Item #4: I am recovering well, but lots and lots of sleep is needed.
So, much more to come. I think that the final concluding point is to observe how critical it is to act quickly and succinctly. A great medical team is mandatory, completely trusted caregivers are mandatory, and basic disease understanding is mandatory. All three things -- mandatory.
