Tuesday, December 22, 2009
On Friday I met with my neurosurgeon, and (finally) here is the report –
My neurosurgeon had just returned from his presentation at “Tumor Board”, and yours truly was (as usual) the subject of much debate. Papillary craniopharyngiomas don’t just happen every day, and the brainiest of the brain surgeons all clamored to have a look at my head scans. My surgeon pulled up the MRIs from just before and just after the second surgery and placed them on side-by-side monitors. The “before” image showed a big mass behind my eyeballs squeezing apart my optic nerves like Zampanòbreaking the chain across his chest in “La Strada.” The “after” image looked pretty clean with the entire tumor gone.
Except for one tiny speck.
Behind a curl of bone in the skull the surgeon could not get to, there is a little white mass on the “after” MRI scan. The speck is not necessarily tumor. It could, for example, be my pituitary gland pushed way out of place. Or it could be nothing. Or it could be tumor after all. Or it could be a fly on the lens. Regardless of any argument from an academic point of view, nothing is definitive. There is just no way to know.
All I know is I have a teensy little speck still in my head and the smartest guys in the room couldn’t agree what to do. Here are my options:
Option #1: DO NOTHING. There is not much to suggest I have much to lose by this approach. The tumor was not malignant. Even if this benign speck grows back over time, craniopharyngiomas are notoriously slow-growing masses and it might not be a problem for 5-10 years down the road. With regular brain MRIs now a certainty for the rest of my life, this little speck’s every move will at least be tracked, tagged and monitored. Nothing will sneak up on me.
Option #2: RADIATION THERAPY. This was the biggest point of contention at Tumor Board. From a neuroradiologist’s point of view, my tumor has just been whittled down and forced into a corner. What is needed is a good few zaps to deliver a knock-out punch and kill it for good. Sound reasonable. However, the argument against is the potential side-effects. Less than 1% of patients receiving radiation between the optic nerves will suffer permanent vision loss of some sort. For those who have seen me go through this before, every time I have a major medical procedure, I find myself in that 1% category. I just can’t risk partial blindness. I happen to like the conductors in my life, and I’d like to be able to see them so I can know when to play.
Option #3: SURGERY. The worst option, and everyone at least seems to agree on that. There is little to be gained by opening up one mo’ time trying to find a tiny speck when the last surgery was over four hours of meticulous scrape, scrape, scrape. Another hospital stay is not worth it at this point, even for the awesome drugs. [ <-- Joke ]
Option # 4: CHEMO. Uh, no.
ANALYSIS: It seems like a no-brainer (pun!). I’m going to do nothing. My next MRI will be in two months, and we’ll be able to compare that with the post-op scan. There is a small argument to be made for radiation therapy right now and pulverizing the remaining tumor in its most vulnerable state. However, what if the targeted mass is not tumor but in fact my pituitary gland out of place? That would make things worse. Also, the slight chance my eyesight could be damaged is not worth it, no matter how remote the odds. Surgery just seems stupid. I liked the nurses fluffing my pillows, but besides that it was one of the worst experiences of my life.
It is human nature to want to DO something, to proactively add something to a set of variables in order to make things better. It goes against our natural instincts to sit back and do nothing at all, yet sometimes this is the right course of action, to remain passive as things reconfigure around you. This is such a crossroads for me. I have a tiny speck in my head, and it bugs me that probably it is up to no good. I want to reach inside my skull, yank it out, and be done with it. But it’s not often in life we get to make everything just so and we need to work around little specks from time to time.