Since my last post I've had 2 grand mal seizures. And since December, as a part of regular MRI monitoring, my doctors accelerated the MRI monitoring schedule to approximately every six weeks to keep tabs on "something suspicious" about which they couldn't come to agreement. Finally, around the end of April and three days after my last grand mal, they did agreed on one thing ... that there was new tumor growth in my brain along the posterior portion of my original tumor cavity.
On May 24 of this year, I went in for what's called an "awake crainiotomy." It was basically a four to five hour operation during which my general anesthesia would be "backed off" to allow me to come almost fully awake and answer several questions before being put back under. It was preceded by a "functional MRI," that is, an MRI during which I would look at pictures, words, and sentences, while THINKing (not verbalizing) about what most appropriately follows. One example is nouns. During the MRI the doctors would show me several nouns and instruct me to think of a variety of verbs that associate with those nouns. I tried to not think of swear words, but inevitably failed. Just thinking of not thinking of swear words caused me to do so. Another example is "fill in the blank," which is exactly what it sounds like, and another was "word-letter association." During the latter I was presented with a single letter, say an "A," and instructed to think of as many words as possible that began with the letter "A." This one was actually pretty stressful because the letter presentations were interspersed with very loud beeps that evoked some sort of pinball machine. Regardless, they subjected me to this roughly 25 minute exercise in order to map my brain one week in advance of surgery and avoid any eloquent speech areas that could be affected by tumor removal.
During surgery I initially remember feeling loopy, once they began the IV that is, and then waking up with the very vague feeling of somebody being inside my head. I recall them showing me a picture of a crucifix and then asking me to count to 10 ... followed by a "slow down" (apparently I was too fast for them) and repeat. There were several other pictures too, but I can't remember them. My recovery went well, and I'm now northward of 85%-87% on most days and steadily improving. Additionally, my co-workers donated, DONATED, 111 sick days to my sick day fund(!) Wow. For this I'm very very grateful, humbled, and amazingly blessed. God is SO good in that He expresses His generosity through others. That's really all I can say. I can't help but thinking about and dwelling on His provision, and it also means I'll continue to be paid a regular paycheck each and every two weeks until sometime in October (although I intend to return in early July), but the option is always there.
So, onto the pathology report. I was diagnosed with what's called a Glioblastoma Multiforme, WHO grade IV. That's right, the cancer's advanced to its final, most aggressive stage. Now, it doesn't mean that death is imminent, although it does set a general outside parameter to my life. To the left is a chart from UCLA NeuroOncology, reflecting the latest survival data. I felt it best to post both, as their age ranges bridge the gap between my where I am now and were I'll be in a few years (the former being the bottom chart). As you can see, only a very small percentage of patients diagnosed with a GBM live beyond 5 years, although the historical data going into these estimates is, admittedly, becoming obsolete.
Since May 24th my cognition has been steadily progressing. I went for a jog today and hung out in NYC yesterday with Roman, my sister's boyfriend. We had good conversation and lots of tasty food (thanks to my dexamethasone, which makes food both impulsively appealing AND delicious!). We walked the entirety of High Line Park on Manhattan's West Side, and although one day a trend does not make, I feel like I've turned a corner. Stay tuned for more updates.
On May 24 of this year, I went in for what's called an "awake crainiotomy." It was basically a four to five hour operation during which my general anesthesia would be "backed off" to allow me to come almost fully awake and answer several questions before being put back under. It was preceded by a "functional MRI," that is, an MRI during which I would look at pictures, words, and sentences, while THINKing (not verbalizing) about what most appropriately follows. One example is nouns. During the MRI the doctors would show me several nouns and instruct me to think of a variety of verbs that associate with those nouns. I tried to not think of swear words, but inevitably failed. Just thinking of not thinking of swear words caused me to do so. Another example is "fill in the blank," which is exactly what it sounds like, and another was "word-letter association." During the latter I was presented with a single letter, say an "A," and instructed to think of as many words as possible that began with the letter "A." This one was actually pretty stressful because the letter presentations were interspersed with very loud beeps that evoked some sort of pinball machine. Regardless, they subjected me to this roughly 25 minute exercise in order to map my brain one week in advance of surgery and avoid any eloquent speech areas that could be affected by tumor removal.
During surgery I initially remember feeling loopy, once they began the IV that is, and then waking up with the very vague feeling of somebody being inside my head. I recall them showing me a picture of a crucifix and then asking me to count to 10 ... followed by a "slow down" (apparently I was too fast for them) and repeat. There were several other pictures too, but I can't remember them. My recovery went well, and I'm now northward of 85%-87% on most days and steadily improving. Additionally, my co-workers donated, DONATED, 111 sick days to my sick day fund(!) Wow. For this I'm very very grateful, humbled, and amazingly blessed. God is SO good in that He expresses His generosity through others. That's really all I can say. I can't help but thinking about and dwelling on His provision, and it also means I'll continue to be paid a regular paycheck each and every two weeks until sometime in October (although I intend to return in early July), but the option is always there.
So, onto the pathology report. I was diagnosed with what's called a Glioblastoma Multiforme, WHO grade IV. That's right, the cancer's advanced to its final, most aggressive stage. Now, it doesn't mean that death is imminent, although it does set a general outside parameter to my life. To the left is a chart from UCLA NeuroOncology, reflecting the latest survival data. I felt it best to post both, as their age ranges bridge the gap between my where I am now and were I'll be in a few years (the former being the bottom chart). As you can see, only a very small percentage of patients diagnosed with a GBM live beyond 5 years, although the historical data going into these estimates is, admittedly, becoming obsolete.Since May 24th my cognition has been steadily progressing. I went for a jog today and hung out in NYC yesterday with Roman, my sister's boyfriend. We had good conversation and lots of tasty food (thanks to my dexamethasone, which makes food both impulsively appealing AND delicious!). We walked the entirety of High Line Park on Manhattan's West Side, and although one day a trend does not make, I feel like I've turned a corner. Stay tuned for more updates.
