Back under control

Posted in Uncategorized by Sean Holton on August 2, 2010

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.


26 Responses

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  1. David Blank said, on August 2, 2010 at 8:05 pm

    Sean – sounds like you’re doing everything right! I’m glad the chemo treatment will be infrequent. Thinking of you and wishing you well…

  2. Colorado Bob said, on August 2, 2010 at 8:45 pm

    You’ll probably want to start a lesson plan in “guts” , as you have more than everyone I ever met , in the flesh or via floating electrons.

  3. Colorado Bob said, on August 2, 2010 at 8:59 pm

    Have you my latest Bear video ? 14 seconds of laugh packed fun ……..

    The theory at work here : ……… cancer hates laughter

  4. Mark Schlueb said, on August 2, 2010 at 9:08 pm

    You’re a rockstar, Sean.

  5. fish said, on August 2, 2010 at 9:27 pm

    hey, they’re supposedly plugging the BP leak, so why not the leak in your brain too?!?! thinking good thoughts for you, Sean!

  6. Tim Holton said, on August 2, 2010 at 9:38 pm

    Sean-so glad to hear you’re not in the meat locker again. Its great to know u can go (from home) every two weeks for treatment. Think Dr. B knows his shit. Here’s hoping this works better than “junk shot” did. Keep those pelicans off your pillow buddy.Ha! U DA MAN!!!! (Like the Halley’s Comet comparison.Now make it disappear for another 75 years and we’ll all be much happier.) Love ya man.

  7. rebeany said, on August 2, 2010 at 10:26 pm

    give the comet tail a run for it’s creepy money. remember…the big chemo cocktail takes you to a difficult place but you will come back out of it and have shown it what for. keeping you in my thoughts.

  8. Flatus Ohlfahrt said, on August 2, 2010 at 11:03 pm

    Lard, looking at the graphic immediately brought forth this Burl Ives song from years back. Enjoy!

    “The Tail of the Comet Kohoutek”

  9. Mary Maupin said, on August 2, 2010 at 11:15 pm

    Go, poison, go! 3 hours every other week to restore good health. Take a good book, and I bet the chair will be comfortable. I’m so glad they didn’t think they had to cut! Thanks for keeping us posted–can I subscribe to your blog?

  10. Craig Dezern said, on August 2, 2010 at 11:29 pm

    Irinotecan? Avastin? Is that the best pharmaceutical nomenclature the marketing teams can come up with? I’d suggest more direct names like Tumor-B-Gon . . . . Glad to hear you stayed off the operating table and have a good action plan!

  11. Jamie said, on August 3, 2010 at 12:12 am

    What I got from this is that you are being invaded by some comet like object with a long tail swinging in from outer space and probably aggravated by the sudden explosion for the tsunami on the sun. Let us hope that all of the celestial objects depart your immediate orbit ASAP.

  12. Colorado Bob said, on August 3, 2010 at 12:42 am

    Resentment ………… Watch out you never turn into a Confederate widow . When Vicksburg fell , they gave up the 4th of July for 80 years.

  13. Colorado Bob said, on August 3, 2010 at 12:52 am

    Lard ……. I have been rethinking not helping you into that big truck . Why this as been on my mind, I can’t say, maybe this site has given me the reason. But I have the comfort that you were at “home”, and not alone in Joplin , Mo. when this burden came to you .

    Somehow I did the right thing, but I regret it never the less.

  14. Colorado Bob said, on August 3, 2010 at 12:56 am

    The world has grown too complex my friend, …… Your clarity is a lighthouse .

  15. Colorado Bob said, on August 3, 2010 at 1:11 am

    ” Every morning I wake-up and I brush my teeth, and sharpen my tongue. “

  16. Michele said, on August 3, 2010 at 1:54 am

    Atitude is everything…waiting to hear about your shenanigans and observations during chemo!

  17. John Glionna said, on August 3, 2010 at 6:58 am

    Seanboy, information is power, and the ability to comprehend and relate that infomation, no matter how personal or complex, is more power still. So that makes you one powerful man. Love you, Sean.

  18. Blonde wino said, on August 3, 2010 at 8:14 am


    You give new meaning to the phrase ‘brain drain.’ You are one tough hombre.

  19. Jane said, on August 3, 2010 at 9:38 am

    Glad to read this update. Chemo, while not a walk in the park, is preferable to actual brain surgery. Take a good book, maybe something by Jhumpa Lahiri. She wrote The Namesake, Unaccustomed Earth and Interpreter of Maladies. Positive attitude will take you far!

  20. Paul Lester said, on August 3, 2010 at 11:11 am

    Sean, thanks so much for this update. Glad the news is good for the most part. Here’s hoping those bratty kiddie cancer cells and parents head for the exits soon!

  21. claudine hellmuth said, on August 3, 2010 at 12:54 pm

    Sean – thanks so much for the update! I think pissing off the brain tumor via humor is a good way to go. Another friend of ours named his Brain tumor ” W.” and it made it so made it went away!!

    love you lots!!!!

  22. claudine hellmuth said, on August 3, 2010 at 12:55 pm

    opps meant to say “made it so MAD” darn typos.

  23. Scary said, on August 3, 2010 at 2:55 pm

    Only you can make me laugh about cancer. Thanks for the update.

  24. don johnson said, on August 13, 2010 at 8:21 pm

    Only a newspaper editor would remember Soren Kirkkegaard! Good to hear you are in great hands of your oncologist. Stay strong buddy.

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