Friday, 10:15 PM
High-Level Journal Summary: The end of 3 days of hyper-fractionated radiation at the National Cancer Institute (NCI). I can say with authority that I can already feel the impact.
I was able to secure more photos of radiation taking place, with me strapped onto the overall table. It certainly helps to paint the story of what is happening, how it is happening, and the devices in play. It helps to paint a story for many to understand.
But the biggest news of the day came during a 30-minute meeting with the Chief of the Radiation Oncology Branch (ROB), Dr. Kevin Camphausen. This is when I was shocked to learn that in 6 years of work, I am only the second patient at NCI to have a GBM+PNET pathology.
Even more, I have the pure luck of needing photon radiation rather than proton radiation. If proton radiation were needed, I would be in Boston or Texas for treatment, most likely. But with photon radiation being the mandate, I am with my team here at NCI, locked and loaded, ready to go. That is damn luck that makes me even more humble.
Countdowns:
1.) Day 3 of hyper-fractionated radiation and low-dose chemotherapy at the National Cancer Institute (NCI). Activity to date gave me (an approximate) grand total of 7.2 Gy (of 60 Gy total) as of the time I left NCI for the weekend.
2008 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 3 days ago. In total, I have had a total of 11 SPS's in 2008 so far.
Actual Journal: I am wiped out. Tired. Objectively, I think the answer for this is quite simple. I have 3 specific items that have compounded at the same time. These things will eventually quiet a bit. However, these things are not quiet at this particular moment. What are these compounding events? Quite simple, actually.
1.) Recovering from my 12/27/07 brain surgery.
2.) Starting hyper-fractionated radiation and chemotherapy on 1/16/08.
3.) Organizing everything -- even with an extended team of helpers.
All this is a lot to do, especially since we still did not know about this GBM+PNET brain tumor one month ago today when I had my 12/18/07 MRI at NIH/NCI/NOB. Ever since we learned about the MRI results on 12/19/07, we have been on the fastest possible pace to react in smart, aggressive, appropriate ways that are well reviewed.
Gantry Machine in progress
I have the continued good fortune of cooperation with the Radiation Oncology Branch (ROB) who delivers hyper-fractionated radiation to me currently. They understand clearly that the upper ranks of NIH and NCI have cleared the work being done for Brain Cancer Awareness on 38 Lemon. As such, I was able to have these photos safely taken today. They reveal what it looks like when a patient is within a Gantry Machine, not long before the radiation is exposed. While these are simple photos, they certainly teach much. I think they are worth sharing.
While this may look like a simple mask, I must say that it is on tight. Extremely tight. I can feel every pour on my face being stretch into place. There is not room for any wiggle at all. All portions of my face get precisely aligned.
Further, after 5 radiation exposures, there is another serious "Quality Assurance" check to ensure that all aspects of alignment are properly in place. That meant my 2 PM procedure this afternoon was preceded with X-Ray checks to ensure that no misalignment has occurred. This is a procedure that has man and machine working together to verify all these values are correct. It is a manifest process that I find impressive and quite assuring (even though I ask many questions about what is happening).
This photo is much closer to the actual moment when the Gantry Machine is going and radiation is being exposed. There are some interesting aspects to the photo. The wedge under my legs is for stability. The heavy lap belt is required since I have Simple Partial Seizures. I have a set pad underneath my back (precisely measured) because of curvature in my back. And finally, my head is so squared down and locked into place that I cannot move it one bit.
I must admit, I have never had my head locked into place such as this in my entire life. It demonstrates the importance of correctly delivering radiation to the correct places at the correct times at the correct depths. It is a serious process managed actively by a series of 4 medical doctors (the top one being the Chief of the Radiation Oncology Branch).
This is an unusual photograph. What is it? That seems like the correct question. The piece in the center with the black rim about it is called the "wedge." As explained to me, this is used to angle the radiation to the correct places. Radiation must be spread to the correct places across the scalp instead of in a "linear" fashion, if you will.
It is not unusual for this wedge to be changed more than once during each radiation session. I do not have all the answers for why this happens yet, but these answers will come as time allows me to ask.
Important meeting with Dr. Kevin Camphausen
I pushed hard today to ensure that I got time again with Dr. Kevin Camphausen, who is once again the Chief of the Radiation Oncology Branch (ROB) of NCI. We were able to get about 30 minutes of quality time. Great notes.
The overall purpose of this meeting? To quickly to get to the point of credibility and rapport where we are talking with each other rather than at each other. Yes, it requires an investment of outside, independent research and study by our overall team. However, it quickly gets us to a point where we need to be. It is somewhat analogous to how I see our relationship with Dr. Howard A. Fine from the past 3 years. Lots of investment to get to a great point of interaction.
My brain tumor is surprisingly rare
I can tell that I do not have the time or energy to go through 30 minutes of notes tonight. Again, I am exhausted. I am eager to share these important notes, but it will happen as I recover and rest this weekend.
All this said, there is a single item that must be highlighted. I must admit that I learned some news this evening that I never expected to hear. Perhaps this news is the big news to drop for the evening. It certainly made me stop, pause, and think.
In 6 years, Dr. Camphausen has worked with about 300 glioblastoma multiforme (GBM) patients. Total. This is it. And of those 300 GBM patients, I am only the second person in those 6 years who has a pathology of a GBM+PNET (PNET = Primitive Neuroectodermal Tumor). And to make matters even more complex, the location of my GBM+PNET tumor requires a photon radiation rather than proton radiation (see 1/15/08 online journal entry). If I needed proton radiation, I would either have been sent to Boston or at the University of Texas MD Anderson Cancer Center.
Bottom line? Damn luck. Yes, rare to be the second person at the National Cancer Institute to have a GBM+PNET pathology. But, perhaps even more damn lucky to have all that is immediately needed to treat this GBM+PNET immediately (i.e., 20 minutes from my home). I can only count blessings on this information I learned today.
