SAME TIME TOMORROW

A very fluid situation

Posted in Uncategorized by Sean Holton on July 31, 2010
Sometimes I wish brains were as simple as cars

 Yesterday (Friday, 7/30/10) featured another wild and momentarily scary ride on the brain-cancer roller coaster. I went in for my regular MRI scan in the morning. It took about 90 minutes instead of the usual 30-45 minutes because my doctors had ordered some extra studies to zero in on two things I’ve mentioned before: The fluid accumulating around my brain and a new spot (thought to be a surgical abrasion) near the edge of my new surgical cavity from the June 2 operation.  

  I wasn’t scheduled to meet my doctor to go over results until this Tuesday. So after the scan, I just went home and got to work on some freelance projects that have been piling up on my desk. I was happily entering the homestretch of the workday and looking forward to a relaxing Friday evening when my cell phone rang. The woman identified herself as my neuro-oncologist’s nurse.

She said: “Doctor Bobustuc has just looked at your scan from today, and he wants you to come to the hospital right now.”   

When I asked if that meant his office at the hospital, she said: “No, you need to get yourself to the emergency room and have yourself admitted. Now. Like, tonight.”   

When I asked why, she said: “Doctor Bobustuc is very concerned that the fluid buildup around your brain is growing rather than diminishing. He is also concerned that the nodule we are watching has doubled in size since June 30.”   

That’s was certainly not the kind of news I was happy to hear on a Friday night less than a week after celebrating a full year as a GBM cancer survivor. But it certainly got my attention.   

 

  Luckily, Dr. Bobustuc himself soon was able to get on the line to explain the situation in further detail. He said I would probably have to have the excess fluid drained ASAP. He said that we would also have to discuss how to attack the growing nodule at the edge of the cavity — which he said the MRI tests suggested was recurrent tumor. He suspected that would mean switching to yet another chemotherapy routine (my third, after being on my second regime for only one month). I asked him if the Big Brain Drain operation would be that very night, and he replied that it might be hard to line it up that quickly or even any time during the weekend. I cringed, suddenly envisioning two or three days laying around in a hospital bed doing nothing but thinking about my brain while watching the latest, relentless footage from the BP oil spill on a small, ceiling-mounted television. So I told the doctor I felt absolutely fine and would rather wait if we could. He asked if I had any symptoms such as headache or weakness in my left side. I told him absolutely not. That pleased him immensely, and he said it was very encouraging. He said rather than rush me into the hospital, he now believed he could simply prescribe me some steroid drugs to ease or prevent brain swelling and that I could manage on my own through the weekend at home. I breathed a big sigh, then headed over to the hospital pharmacy to pick up the new steroid drugs and (hopefully) get a refund on the extremely-expensive-but-now-useless chemo drugs that I had just picked up that morning. Luckily, I was able to do both.

I got luckier still on my way to the pharmacy when I was standing in a hallway and out of an elevator pops Dr. Bobustuc, himself. He was thrilled to see me in the flesh, and said I looked even stronger and better than I sounded on the phone. He felt the right side of my head and said there was no indication that the excess fluid inside was causing any undue swelling — at least not on the outside. He said he thought the fluid buildup might be stemming from irritation caused by the growing nodule, tumor or whatever the hell it is. I guess we’ll find out. Even though it has grown, it’s still pretty small — maybe just the size of a nickel.      

My doctor will spend the next couple days conferring with my neurosurgeon and some other doctors, and I am scheduled to meet him Monday. He told me to be prepared either to be admitted for an additional operation or perhaps to begin a new chemotherapy treatment featuring direct, intravenous infusion. That’s something I haven’t yet experienced on this journey — I’ve been a pill-popper until now. But IV chemo is actually what most patients suffering through other forms of cancer must learn to endure. So I can’t really complain about the switchup.      

I’ll know a lot more next week. But I wrote this post anyway because I didn’t want to cram all this necessary background information from Friday into a future update that will probably contain more news.      

My mental and emotional state is still very positive. I am still lucky to be alive. I am staying calm. Many people with my diagnosis might be dead by now or dealing with multiple, large and inoperable tumors if they’d even made it this far. And until further notice, all I’m dealing with is a leaky brain and a stray, nickel-sized, something-or-other.      

Of course the news could get worse in relatively short order. But no matter what happens, no one or nothing — not even cancer — can ever take the last year away from me. And that’s what keeps me happy.

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17 Responses

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  1. Jamie said, on July 31, 2010 at 7:45 pm

    Sorry to hear you have gotten aboard the roller Coaster for another ride and I hope once the plumbers have cleared the back up in your cranium that the other whatever it is turns out to be totally unimportant.

  2. Keith Kohn said, on July 31, 2010 at 7:48 pm

    Sean,

    Sounds like the biggest pain in the neck right now is figuring out what is happening betwixt your ears. And don’t worry about the direct drips of chemo. They’ll probably place a port in your chest or arm. It’s surgical but not terribly painful. After what you’ve been through it’ll be a piece of cake. Like any journey worth traveling, there’ll be some hills along the way. I’m sure you’ll keep kicking this cancer’s ass.

  3. Bluedevil said, on July 31, 2010 at 8:04 pm

    I put down a John Sandford to read your msg and the link, Seanboy. He moves a story along about as slick as anybody, but he’s got nothing on you… I think you’re probably beating him on plot twists, too… You my favorite writer, dude… Just make sure you keep it coming.

  4. Lisa said, on July 31, 2010 at 8:20 pm

    I will be praying for you and will ask my praying circle of girlfriends to do the same.

  5. Tim Holton said, on July 31, 2010 at 8:53 pm

    Prayed for u today at your favorite place, the Carmelite Monastery. Know our prayers were heard, don’t know why or how , just know. It was great talking to you Saturday nite. Keep on reading Merton, its perfecto. Tell Fr. Paul (center) howdy. I love ya buddy.

  6. Kathryn Quigley said, on July 31, 2010 at 9:19 pm

    Oh crap. Stupid fluid! Good for you for taking control of the situation though and deciding not to spend the weekend in the hospital. You need to be calm and rested for the next procedure and THAT won’t happen in the hospital.
    I send you hugs.
    -Quigs

  7. Kathryn Quigley said, on July 31, 2010 at 9:22 pm

    P.S. My sister takes steroids for a back injury and they give her vivid, wacky dreams. Keep that in mind in case you experience that – it’s not the acid flashbacks (ha!), just the steroids.

  8. Mary Maupin said, on July 31, 2010 at 9:33 pm

    Hey Sean,
    I’m not much of a pray-er, but I will piggyback on others’ faith, and I will pray for you also. I do think there’s probably something positive in prayer, especially if a lot of people are praying and holding you in the light. I love your spirit and your positive thinking–it’s wonderful! And I’m sure this optimistic outlook will have healthy results for you.
    Mary

  9. April said, on July 31, 2010 at 10:57 pm

    You are keepin’ them guessing, Sean, so good for you in making sure they’re paying attention.

    Good call on the weekend at home, too. Enjoy the time, and I’ll be sending positive cosmic whirlies your way on the Monday appointment!

  10. John Glionna said, on August 1, 2010 at 5:04 am

    Sean, Goddamn man, you are going to the mat with this thing. I think of how most people handle bad news, setbacks, scares, in their lives, and how most don’t even come close to living up to the hoped-to-achieve images of themselves . Not you. You are one big Midwestern cancer ass-kicker. Whatever happens on Monday — good, bad or indifferent — you are an inspiration to tthe legion of people who love you. We are rootin for you, dude….John

  11. Kathy Green said, on August 1, 2010 at 9:17 am

    Hey, Sean, you know from my e-mails that the IV chemo is not so bad. The thing that irritated me most was a metallic taste for about a week; that is insignificant! Hopefully, we will both be buddies with NED (No Evidence of Disease in cancer lingo) by years end. Hang in there.

  12. Molly BB said, on August 1, 2010 at 3:36 pm

    Sean – I just happened to check in today and found that I am behind – as you’ve written 3 posts since my last blog visit. I don’t know where I’ve been but obviously have not been keeping tabs on you as closely as I want, although I DO think of you more often than you would imagine. I’m going to rev-up those thoughts and prayers! That’s a good picture taken in front of the Y on your bike. Give Kaley and Chopper a pat on the head from me. Blessings to you – Molly BB

  13. Ann Hellmuth said, on August 2, 2010 at 9:24 am

    And just to let you know what an amazing guy Sean is, in the midst of all his problems he’s become confidant and adviser to my husband who is embarking on the lung cancer chemo/radiation cure. He was calling and giving his advice when we should have been comforting him.

    “Sean says….” has become the mantra in our household. Thanks Sean for all your support and calls. We’ll be keeping our fingers crossed today.

    Ann

  14. Geri said, on August 2, 2010 at 11:42 am

    I’m late to this post, Sean. Loved the part about the Doctor being impressed with how hale and hearty you looked in person. What a smart guy for being able to see the whole patient and not just the fluid and the nickle-sized something-or-others inside. By now you’re closer to finding out the next chapter in your epic. I so admire how you take care of yourself. Knowing you, you’ll ace this next chapter no matter what arises. Sending prayers and good thoughts your way.

    Geri

  15. Jane Smith said, on August 2, 2010 at 11:47 am

    Sorry to hear this, Sean. You’ve been such a trouper, I want to say: “Don’t give up, now.”

    I had brain surgery a few weeks before you did. I can truly empathize with living from MRI to MRI, and the god-forsaken clanging noise from the magnets of the MRIs that even music can’t deafen.

    I recently had a spectroscopy, in addition to the regular MRI, with and without contrast. The only thing that helped get me through the lengthy scan was to concentrate on my breathing and try to overcome the clanging noise. (I’m taking yoga classes, and I’ve learned the power of breathing.)

    My MRIs are still clean. I hope and pray that yours will be, too.

    P.S. I work with Tiff Theisen who told be about your blog.

  16. MARSHALL JOREL said, on August 9, 2010 at 10:26 pm

    SEAN
    HAD DINER WITH TIM AND JULIE THE OTHER NIGHT AND HE GAVE ME AN UPDATE. I LIKE YOUR BLOG. HOPE ALL IS WELL. JUST KEEP YOUR MEMORY OF ME BEATING YOU AT “NO RULES”PING PONG IN TIM’S BASEMENT, HA.
    HANG IN THERE SEAN, WILL KEEP YOU AND YOUR FAMILY IN MY PRAYERS.
    MARSHALL

  17. […] refresher: Besides confirming the recurrence of a malignant brain tumor, the July 30 scan showed further growth in a dangerous buildup in fluid and pressure around my brain that had my […]


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