Back under control
After the near-emergency on Friday and getting through the rest of the weekend in fine form, I had an excellent, information-packed and ultimately optimistic appointment with my neuro-oncologist today (Monday 8/2/10).
First the good news: I was NOT immediately handcuffed to a hospital bed and rushed into surgery for some sort of emergency procedure that would have blown another big hole in the next month, or at least the next week, not to mention my head. Instead, my changing condition and the alarming fluid build-up around my brain appears to be very treatable by switching me over immediately to a bi-weekly intravenous infusion of a new cancer-killing chemo agent called Irinotecan in combination with a liquid drug called Avastin, which has shown good results choking off the blood supply to brain tumors. The infusions will involve sitting in a chair with an IV drip in my arm for about three hours once every two weeks. That’s pretty manageable in a world where similar regimes for other cancer forms involve sitting in the chemo chair for many more hours at a time on consecutive days. My heart goes out to people who must go through that.
Dr. Bobustuc and I sat down with his nurses and went over the results of my detailed MRI scan from last week. So now for the bad news: The scan confirms definitively that I have a recurrent tumor at the margin of my second surgical cavity that was created on June 2. The new growth is only about 2.1 centimeters (or .8 inches) in diameter at its widest point, but Dr. B believes that this tumor is actually the source of the fluid that is building up around the edges of the brain. That’s because the fluid buildup is visibly much richer in protein than the regular, clear Cerebrospinal fluid that naturally surrounds the brain and fills its various cavities. As such, the bad fluid shows up in the scan as a much darker area than the CSF. So you see? I really do have sort of a miniature Deepwater Horizon oil spill disaster going on inside my head. That’s what I get for making fun of Mother Nature when I made that joking BP comparison in my last post and an even earlier post. I obviously need to get some new material before dead pelicans start washing out of my ears and showing up on my pillowcases every morning.
Anyway, Dr. Bobustuc is actually more immediately concerned about the danger posed by the fluid buildup than he is about the tumor, itself. The fluid could cause pressure leading to a seizure or even more serious collapse. But so far, I haven’t even had so much as a headache from it, or any weakness on my left side or any sign of debilitating fatigue stemming from pressure on my brain. I’m still walking my dogs every day, doing chores and even getting some regular work done. Dr. B put me through some clinical drills to prove all of that to his satisfaction, and was thrilled by my performance. He thinks it definitely buys us time to attack that little tumor with this new, high-powered chemo cocktail until we knock out it’s fluid-producing ability. Then the fluid it already has produced can be naturally absorbed by my body. So I’ll have time to get two chemo infusions this month before getting another MRI scan on August 30 to monitor progress. Dr. B told me he expects the next scan to look very good, with the tumor either stopped in its tracks or maybe even showing signs of shrinkage. And if I continue on the routine, it could potentially halt further progression of my GBM brain cancer for many more months.
In the alternative, I could have been rushed in to have my head opened up to directly drain the fluid now. But that would have meant I’d have to hold off on attacking the tumor with powerful liquid chemo for a few weeks until my brain could heal from the more invasive procedure. And during that pause, more bad fluid might just start building up all over again. So we’d be treating the sympton rather than the source of the leak. Well, one might ask, why not just go back in there all the way and cut out the recurrent tumor itself? Well, that might just perpetuate a process by which every time a tumor is removed — a new one will simply appear in short order at the edge of the cavity. And here we go all over again.
On the MRI scan, Dr. B. showed me something I had never seen before — my recurrent tumor does not show up as a smooth sphere, but this time is more in the ragged shape of a comet. Since I can’t post the actual MRI scan here I did the next best thing and found a picture of Halley’s Comet to illustrate. It really does sort of look like my new tumor. If you can read the labels on the photo, the biggest, brightest, roundest part (labeled the “coma”) is the 2.1 centimeter part of the tumor. But then as it trails off into the Dust Tail and Ion Tail areas, it looks just like a tail that is now visible flowing off the right edge of my tumor as it shows up on the MRI scan. And inside my head right now, that visible trail is already drifting back into a more central cavity or “ventricle” that is like a passage way through other cavities and into other parts of my brain. That means further surgery could get scary. You could keep cutting off the round, highly visible part of the tumor and the tail might just keep producing another one at the edge of the new surgical cavity — sort of like you just pruned back a tree branch that will eventually just produce a new, faster-growing bud. That’s basically what’s already happened to me. But an even scarier prospect is you keep chipping away so much that the tail gets really angry and starts to push to grow tumors in newer, deeper directions. Yikes. I don’t like the sound of that at all. And if you start chasing that tail around all over the place to cut it out, you could quickly get into whacking out big, really more useful parts of your brain. And I don’t see that being part of my game plan.
And who knows what else can happen in this crazy world of cancer? I’m learning about the absurdities of this disease not only on my own journey but also by sharing and learning from the experiences of other dear friends of mine who have been are currently being treated for other forms of the scourge. Because I live in Orlando, I can visualize the potential for this stuff spreading around in a way that my many friends who also live here could easily relate to. I just imagine all those angry, sweaty little Mom, Dad and Kiddie Cancer cells taking off like a bunch of Orlando tourists armed with Park Hopper passes — eager to treat the rest of my brain or body like it’s some sort of new, cancer theme-park attraction. (Kid #1: “Hey Mom let’s go to Cerebral Cortex Land!”, Kid #2: “No! I’d rather ride down Frontal Lobe Falls.” Irritated Dad: “If you kids don’t start behaving, we’re going to get in the car and take you down to Pancreas World. And nobody EVER has fun down there!”
So I’m on board with the heavy-duty, liquid chemo plan for now. Let’s just try to poison this crap and see how it goes.
Meanwhile, let’s just keep our chins up and keep making fun of my brain cancer while we still can. I think that pisses it off more than anything.
Thanks for all your support and encouragement here. It really has meant the world to me, and helped me keep a positive attitude.