Friday, 12:30 AM (late!)
High-Level Journal Summary: Unexpectedly getting my pathology report 5 days early than expected at NIH. The result? I now have a glioblastoma, which is the fastest growing form of brain cancer there is. It is primarily located in my left frontal lobe.
To make things special, mine is uncharacteristically unusual, but that will be addressed in other online journal entries. For now, the simple message of what has been learned and what needs to be done next is provided.
This is certainly a day which I will never forget. That is now fairly impossible.
Countdowns:
1.) Pathology review on 1/9/08 (Wednesday) at the National Institutes of Health (NIH) was unexpectedly moved to today at 3 PM. That meeting happened because of unexpectedly quick pathology results between NYU and NIH. There was enough information available to meet with my primary neuro-oncologist, Dr. Howard A. Fine, late in the afternoon today.
2.) Follow-up pathology medical meetings will take place on the morning of 1/7/08, starting at 9 AM. Unlike other medical meetings, few details are known at this point other than that is the time the doors open on Monday morning. We will be first in line.
2008 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 2 days ago. I made it through another day safely without any SPS's. This always makes me happy. Please note that yearly averages for 2008 will not be listed until there is sufficient data for doing so.
Website Updates:
A new tab was added to 38 Lemon. This has been much work in coming and has much work left to complete. What is this new tab? The Media tab. It currently provides about 50% of the press coverage of 38 Lemon from when this brain cancer awareness tool was launched 3 years ago. By the end of 1Q08, it should be up to the standards of the rest of the website. Until now, it is a very solid starting point.
It is good to have comprehensive Media coverage, especially as the cause of brain cancer becomes more prominent because of all of our good work together as patients, caregivers, doctors, and people who care about making substantial differences in this area of medicine.
Actual Journal: Today is a unique day in my life. I was sleeping in my bed at 2:30 PM when I heard beating at my window. I thought it was a bad Gardner. Instead, it turned out to be my Dad, trying his best to wake me in my floor level bed. He was digging through a covered window, making all sorts of noise -- even breaking things. Little did he know that at the moment he was trying to wake me that he had already a key to my front door in his pocket! I gave him a hard enough time about it afterwards that he finally laughed.
But why would he be going through such vigor? And why would my Mom be at the front door, acting just as superbly? She had a phone in her hand and my phone was on right beside beside my bed. She could have dialed my number and I would have picked up the phone. Plus, she had a doorbell right in front of her. But, she did not press the doorbell, either. She was oblivious because of so many other things this afternoon.
Bottom line -- my parents were in a rush mode and not thinking clearly at that exact moment. When they finally got my attention, I better understood why. Pathology results which were not supposed to be ready until next Wednesday (1/9/08) were all of a sudden ready for review at NIH. It had taken much effort, but the results were secured earlier than expected. My parents wanted me ASAP to get to the National Institutes of Health (NIH) for these pathology reviews with Dr. Howard A. Fine, my neuro-oncologist.
"Weird Glioblastoma"
Once we got Dr. Howard A. Fine in the room, we got straight to business. I could dive into pages of text about what I learned, what is happening, and what the initial recommendations have been. But, there is time for that later. The technical detail, even at a high-level, is significant.
For now, I will keep things very simple. That's it. I am absorbing this information psychologically. It is where I am at this particular moment. It's a more appropriate place to be for me on a Friday evening, where I have an entire weekend to absorb all that was communicated between 3:30 PM and 6:00 PM this evening.
Officially, the new tumor that was partially extracted by Dr. Patrick J. Kelly on 12/27/07 is a glioblastoma ("GBM"). This is the fastest form growth of brain cancer there is. This is big and unexpected news with significant, immediate impact.
What makes my GBM "weird?"
To really answer this question, we would have to get quite technical. At the most simple level, a "typical" GBM would have certain components. I have some of those typical components. However, I also have other components, as well.
What are these "other components?" They are components commonly found in "children and young adults." I have elements of Primitive Neuroectodermal Tumors ("PNET"), which is not quite common for someone like me.
How to treat all this
Without even getting into the complexity of my new pathology, knowing this information helps to clue us into what needs to be done next. Once again, I will keep things at the very highest level. Things will be moving around and changing, after all. But for the moment, we will need to do things like this:
1.) Wait 3-4 weeks more to recover fully from my 12/27/07 brain surgery. The swelling from my brain surgery needs to go away before we can begin any next steps.
2.) Take 6 weeks of highly-specialized radiation called "Involved Field Radiation." This is an FDA-approved process, so it will be expensive.
3.) Also take low-dose Temodar while taking these 6 weeks of daily radiation. Why? This will serve as a "radiation sensitizor," helping its overall effectiveness.
4.) After 6 weeks of radiation, we will have to use "PNET chemo attacks" as the next step. I have much to learn about this process. No matter what, it means cranking away even more after radiation.
Final comments from Dr. Fine
Dr. Fine was extremely impressed with the work of Dr. Patrick J. Kelly. The MRI Scan after my 12/27/07 surgery was impressive. Dr. Kelly took out "loads of tumor" and was able to give a "full presentation" of tumor sample for pathology (which is highly desired). In other words, good job, Dr. Kelly. Job well done.
Life expectancy
I am blunt and to the point. I am the first to admit that I am a life advocate and a positive person. I know this about myself. It is just part of how I am constructed.
I am also a realist, so I ask point-blank questions and start to get a handle on them immediately. After a boatload of technical PNET questions, I got down to a pretty simple question.
Well, Dr. Fine was point blank, honest, fair, and loving in response to my question. This is the relationship we have had for much time. There is a scenario where this GBM could take me in "a matter of months." Across the board, there is a scenario where I could dig out "another 5-10 years." That defines the overall boundaries with which we are currently dealing.
Rest for a big 2008
It is late. I am tired from so little sleep (because of all the perky post-surgical steroids I am on currently), which keep me awake and extremely hungry. At the same time, I need a great night of rest, which is hard to obtain because of the impact of other post-surgical drugs I am currently taking. It is an odd balance, without doubt. Difficult to maintain for lengths of time, for certain.
No matter, it is clear I need to find a way to get some good rest this evening. The bottom line for me at this moment is that I have one of the toughest years of my entire life before me at this moment. I am aware of that, even though I do not know all of what it means.
I will be kicking in my relative youth, energy, overall fitness, and positive attitude to take on an enemy that cannot be completely controlled by anyone. This is just one of those situations we will ALL face at some point in life. The only difference for me is that we can see it coming in real time and will be dealing with it face to face. Just a little it different from other forms of very lethal medical situations with no advance notice prior to presentation.
This is exactly why I went on yet another exercising session this evening before dinner. The battle has already begun.
