SAME TIME TOMORROW

That’s why we call it cancer

Posted in Uncategorized by Sean Holton on April 20, 2011

Have I mentioned how much I love MRI scans?

I’ve been spoiled my my past several good scans, but my experience Tuesday (4/19/11) will surely cure me of that. The scan, itself, went as smoothly as ever. The path got rocky when I went over the results a few hours later with my oncologist. The bottom line: After being held in check for nine months by my combination chemotherapy drugs Irinotecan and Avastin,my GBM is living up to its fearsome reputation as the most aggressive and hard-to-control form of brain cancer. The scan revealed a growing, white area of tumorous enhancement in my brain that is about 60 percent larger than it appeared on the images just two months ago from my February 22 scan. That means the GBM is starting to spread and visibly infiltrate a wider area of my brain. We’re still not talking about a dense, focal mass the size of a golf ball, tennis ball or some other piece of sports equipment that we always like to use to describe tumors. Rather, we’re still talking aabout what looks on the MRI screen like a large, white, moving cloud of cancer. Instead of being 3.5 centimeters wide and 5.5 centimeters long, the “cloud” is now about 5.5 centimeters wide and 8.5 centimeters long, according to my doctor. This sort of disease progression on the backs of quick-dividing, fast-multiplying, rogue cells is why GBM is so scary, because growing and growing rapidly is what GBM does best.   That’s why we call it ‘cancer.’ Even though we associate it with decay and death, what cancer really is exactly the opposite. Cancer is growth, growth that will not be denied, growth gone wild. Cancer is life, life unkillable and out of control, . After living with this diagnosis since July 2009, I can’t even trim my fingernails or shave my beard anymore without thinking about my brain tumor. Long nails and scratchy whiskers are just another reminder of unwanted growth, relentlessly going about their unwelcome business ofcellular division and multiplicationwith a constant eye, as I imagine them, on the same metabolic clock that rules the daily proliferation and spread of cancer cells.

Given this biomedical reality, I can only continue to count myself lucky that I have enjoyed as many “clean scans” as I have in the 21 months since my diagnosis. I’ve had more good scans, in succession, than a GBM patient really has a right or a statistical basis to expect. These types of tumors typically grow and spread at a rate that cripple and kill patient in a matter of months, not years, from diagnosis. Until now, my biggest physical setbacks have come in the form of peripheral issues not directly related to recurrent brain cancer. There was a bad scan in May 2010 that prompted a second surgery to remove a chunk of my right temporal lobe that contained fewer live cancer cells than dead cells killed off by previous treatments. Then there was that horrible scan in October 2010 that showed a dangerous buildup of fluid around my brain that had to be drained in a third surgery followed by a grim week flat on my back in an intensive-care unit. Yet even through all of that, the cancer, itself, has remained mostly under control…until now. Until now, as I’ve often told people, I haven’t really been through the experience of what it’s like to have a brain tumor. I mainly know what it’s like to be treated for a brain tumor. I don’t yet know what it’s like to suffer from degraded motor function, muscular weakness, difficulty walking, slurred speech, frequent seizures and other symptoms that typically result directly from brain tumors and often prompt the discovery and diagnosis of such a tumor. I had one sudden and, for me, unprecedented seizure on an exercise bike at the YMCA – that’s how my tumor was discovered. Since then, all of my bitching and moaning has centered around the secondary effects of each phase of treatment – surgery, followed by radiation followed by then by a number of harsher chemotherapy regimes. Those remedies have affected my day-to-day functionality and quality of life far more than the underlying disease or tumor. Sure, the popular drama always casts the noble patient “battling cancer” and beating it against all odds. But the real story for me so far has not been about  the patient battling the cancer so much as it is about the medications battling the cancer and the patient battling the meds.

So now, after Tuesday’s scan, what does the path ahead look like? Right off the bat, my oncologist – Dr. George Bobustuc – announced that it is time to “switch gears” to new medications that will attack the cancer in new ways that it has not yet had time to adapt to or build up resistance. Some of the pills I’ve already had experience with. It also comforts me to know that I will continue to get regular, intravenous infusions of the chemotherapy drug Avastin, which has worked so dramatically well for me in the past. Dr. Bobustuc said he is optimistic that I will respond well to this new combination of chemo pills, given how well I have responded to previous chemotherapy combinations. “I think we will be able to turn this around again,” Dr. Bobustuc said Tuesday. He is also sending me back for a consultation with the radiation oncologist who oversaw my initial radiation treatments back in the late summer of 2009.  Usually an aggressive, six-week course of targeted radiation such as the one I went through is aimed at the original tumor cavity and a wide margin of surrounding tissue. My understanding is that when that tissue has been treated once it has essentially been treated forever. But now there is a chance that, with the cancer infiltrating into previously unradiated areas of my brain, we may be able to retarget radiation to those new areas and achieve a desirable result. I will know more on that front after meeting with the radiation doctor next week. My doctors and I will know even more about my new, overall prognosis in about a month, when I get another MRI scan to assess whether the new treatment will work or the cancer will continue to spread and grow.

Have I mentioned how much I love MRI scans? Have I also mentioned how much I hate them?

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50 Responses

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  1. April said, on April 20, 2011 at 5:06 pm

    Sorry to hear of the setback, but as always, you seem to be moving forward. You’ve got a lot of us in your corner, Sean. Keep us posted. And I’ll be sure to send my patented positive cosmic whirlies your way, too.

  2. claudine hellmuth said, on April 20, 2011 at 5:15 pm

    “I think we will be able to turn this around again,” – hanging onto those words and sending you love!

    • MARSHALL JOREL said, on June 16, 2011 at 5:07 pm

      YO SEAN HANG IN THERE BUDDY. I WANT A REMATCH AT PING PONG, HA. I GUESS TIM SHOULD BE THERE BY NOW, TELL HIM HI FOR ME. HOPE ALL GOES WELL AND KEEP UP THE BLOG IT IS EXCELLENT.

  3. fish said, on April 20, 2011 at 5:21 pm

    thinking of you Sean! hang in there!

  4. Patsi said, on April 20, 2011 at 5:36 pm

    “I think we will be able to turn this around again,” Dr. Bobustuc said Tuesday. This is the most important thing….the doctor thinks you can turn it around again.

  5. Paul Lester said, on April 20, 2011 at 5:41 pm

    Heartbreaking news, Sean. You are constantly in our thoughts. I pray the new treatment makes the cancer cloud blow away. F’ing cancer

  6. Sara Brady said, on April 20, 2011 at 5:52 pm

    You are surrounded and therefore powered by love. Toss that into your prescribed treatment. Here’s knowing you will turn this around again.

  7. rebeany said, on April 20, 2011 at 5:54 pm

    i’m so sorry to hear this news. you are in my thoughts each day and hoping you move forward – and that those drugs do their damned job. i echo above: F’ing cancer.

  8. Lisa Roberts said, on April 20, 2011 at 7:03 pm

    Sending good thoughts your way, Sean. Hang in there and beat this back.

  9. ellenpholton said, on April 20, 2011 at 9:45 pm

    i love you sean

  10. Jamie said, on April 20, 2011 at 9:54 pm

    Bad and sad news, but you know how much everyone cares about you. With your realistic view of life and your fantastic family to aid in the fight, you have a lot of strength in your corner to take on this latest manifestation of the beast.

  11. Laura said, on April 20, 2011 at 9:55 pm

    Sean, I don’t know you — I’m only a “friend” of Craig’s (i.e., admirer and fan, although we did attend Stetson at the same time, and both did Poly Sci), but I just wanted to tell you that you are an AMAZING person, a BEAUTIFUL writer, and a gift, it is clear, to your friends and family.

    My prayers will be with you in the latest round of this fight. Keep a’ goin’!

  12. Sherri Owens said, on April 20, 2011 at 9:57 pm

    Thinking of you Sean and praying that this will be only a very minor setback.

  13. Michele said, on April 20, 2011 at 10:12 pm

    Dang – you are an inspiration for all of us! Go get ‘em!

  14. Keith said, on April 21, 2011 at 8:25 am

    Sean, it is encouraging that your doc remains optimistic, as do you.

    Keep the faith, man, because the alternative is not an option.

    Think of it this way, these meds cost Big Pharm buttload, and they expect payback, so something’s got to work, right?

    But seriously, as one who also is in this fight, I admire the heck out of your dogged determination.

    Keep it up.

    Keith

  15. patebooks said, on April 21, 2011 at 9:51 am

    I know you’ll go after that turnaround with same determination and humor as before.
    Yeah, cancer throws curves. But you’re a designated hitter. (Having used up battle metaphors, we now turn to sports!)
    Go for it, guy.

    Your fan and friend, Nancy

  16. Jane said, on April 21, 2011 at 9:58 am

    I was just thinking about you this week and wondering how you were doing. I’m sad to read this news of your cancer spreading, but I am glad that your doc remains positive. I think that’s the key to a long life. I’ll keep you in my prayers.

    Stay strong!
    Jane

    P.S. I agree on the MRIs! That clanging adds to the stress of the scan.

  17. Mark A. said, on April 21, 2011 at 7:36 pm

    As you said so eloquently in your post on despair, that is the biggest and most loathesome enemy you will ever face, and you have already defeated that fear. Everyone who cares about you is proud of and inspired by your courage, Sean. I’m also glad you have a solid faith network to plug into; that makes a huge difference.

  18. Jane said, on April 21, 2011 at 10:21 pm

    Also, how did your fellow patients react to receiving the origami cranes? Are you now famous at the M.D. Anderson Cancer Center in Orlando?

  19. Pat & Becky said, on April 21, 2011 at 11:47 pm

    Heya friend. You’ve been on our minds.

    While not the update we’d hoped to see, we are enocuraged by your positive reaction to treatment in the past and have all faith that you will come through this second round AOK.

    sending our strength and love….

    P & B

  20. David & Craig said, on April 22, 2011 at 1:53 am

    Hi Sean,

    So sorry you have to go through this, but we’re thinking of you and are with you every step of the way! Like everyone else, glad there’s a course of treatment that Dr. Bobustuc has confidence in, and that you have so many good friends and family members wishing you all the best.

  21. David & Craig said, on April 22, 2011 at 1:57 am

    Hi Sean,

    So sorry you have to go through this, but we’re thinking of you and are with you every step of the way! Glad Dr. Bobustuc has confidence in the treatment plan, and that you have so many wonderful friends and family members in your corner.

  22. Tim Ross said, on April 22, 2011 at 8:13 am

    Sean,
    You probably don’t remember me but I was part of the Eric Van Buskirk/Pat Sheil Posse back in the day. Spent some memorable evenings in your company back then. Then I ran off and joined the Navy after college. 30 years later I’m out here in Virginia. Pat sent me the link just yesterday. Very sorry to hear about your challenges but wanted to pass on my admiration and encouragement for the fight. Will be thinking of you.
    Tim Ross

  23. Dan Salm said, on April 22, 2011 at 11:13 am

    Sean,
    Alex sent me your posting this morning. Several weeks ago, my neighbor told me a horrible tragedy that occurred in his life many years ago. He said, “You never know how strong you can be until you are confronted with the worse….somehow you make it through it.” You have been so strong over the last two years…I have admired your perserverance. I pray for your continued strength as you start new treatment that I hope and pray will be a success. Take care.

    Dan Salm

  24. Janice Blase said, on April 22, 2011 at 11:29 am

    Two things I like about this update, Sean…your indomitable spirit, and your doc’s steadfast belief in what the two of you are doing. You are both in my thoughts and prayers. Go get ‘em, Sean!

  25. Dolores Beasley said, on April 22, 2011 at 11:36 am

    My prayers are with you. I was cleaning out files the other day came across a story we shared a byline on about pit bulls. I remember at the time (25 years ago!) thinking, “This was a good story without him, but thanks to him it made made the front page.” I still admire your writing. Thank you Sean for so eloquently sharing your news with all of us.

  26. RebelliousRenee said, on April 22, 2011 at 12:27 pm

    {{{{{{{{{{{{LARD}}}}}}}}}}}}}}

    good to see your doctor has so much faith…. you are very much loved…
    and your dogs needs you…. hell… we all need you…
    My prayers are with you, Sean.

  27. Ned said, on April 22, 2011 at 4:04 pm

    Hey, Sean, the Popkins Prayer Tower is staffed round the clock, especially this Easter weekend. Missed talking with you at Jane’s two weeks ago; probably should have spent less time shoveling food in my mouth!

  28. Elaine said, on April 22, 2011 at 8:29 pm

    Have I mentioned how much I love you? Have I mentioned how much I hate cancer?

  29. Molly BB said, on April 23, 2011 at 11:48 am

    Sean – just read your post. I too am sorry to hear the latest. I continue to hold you up in prayer during this lenten season. I heard the ‘snake’ story ; too bad Chopper can’t attack ‘the beast’ – he’d annihilate it for sure! Love, Molly BB

  30. Greg said, on April 25, 2011 at 9:14 am

    Mary alerted me to the latest post. As always, you’re sensible and level-headed about what’s ahead. I’m pulling for you, pal — and I still owe you lunch.

  31. kcowley said, on April 25, 2011 at 1:29 pm

    Hello Lard, thinking of you, hang in there cancer slayer!

  32. beach music said, on April 25, 2011 at 8:32 pm

    i’m a trail mix lurker who has been following your posts for several years. i am sending you prayers of healing strength and may your worries blow away with the wind.

  33. Mike Oliver said, on April 26, 2011 at 8:16 pm

    Sean,
    I hate my journalistic self sometimes, in that I come away
    from your posts immediately in awe of your amazing writing, only to be
    blind-sided moments later by the seriousness of the message.
    Thinking of you.

  34. Bernadette said, on May 7, 2011 at 11:55 pm

    I just found your blog. My husband was diagnosed with grade 3 astrocytoma in Jan 2011. He starts the first round of 5/23 temodar this month. He is very tired most of the time even though his radiation ended 3/21 and is very anxious about taking the double dose of temodar. He already takes 3 naps a day and is afraid he will be flat on his back most of the day. You don’t write about your experience with the 5/23 cycle. Did you have alot of fatigue and what did you do that helped. We have my daughter’s graduation and have to fly to another state and not sure if he will be able to make it on a double dose of temodar.

  35. Jeff Propst said, on May 11, 2011 at 5:56 pm

    I was just thinking about you today. Hang in there my friend. You have a way with words.

  36. Don Johnson said, on May 11, 2011 at 7:25 pm

    Thought I would checkup on you today and saw you had a setback. You do good against this bad “juju”. I’ve got faith in you buddy.

  37. Mayor from Chicago said, on May 15, 2011 at 12:11 pm

    Sean, Just checked back in. Sorry about the setback. The family and I are praying and pulling for you. I am sending you some stuff via e-mail after this comment. I don’t think I can send photo via this comment.

  38. Barbara Camody said, on May 17, 2011 at 3:39 pm

    Dear Sean,
    I want you to know that I treasure your gift. I received my envelope with your story and my crane during my last visit to MD Anderson for my MRIs and visit with Dr Bobustuc April 20. I have grown to have great respect for the fine folks who are MD Anderson and I refer to MDA as my “Mothership”. Thank you for your eloquent words. Senbazuru describes the collection of cranes but it also represents hope and love in knowing so many others care and share your burden. I have learned how important attitude is — how necessary courage and heart are. These are the things that added with the desire to stay vertical keep us strong. I have been fighting my fight with “C” since July 2006 but my battles have not been nearly as valiant as yours. You stay strong, Sean. My heart is with you as are my prayers.
    Barbara

  39. Flatus Ohlfahrt said, on May 18, 2011 at 11:27 pm

    Lard, Craig just said you’re in one of your cancer moods again. Be that as it may, we still have unfinished business–like a Florida/So. Carolina beer drinking session, and other happenings of similar importance. So, if you’re up to it. pull yourself together and you choose the pub. Sturg and I’ll pick you up in the Rolls.

  40. Blonde Wino said, on May 19, 2011 at 6:19 am

    With all the bad news these days, I am counting on you to turn this around, Sean. I expect to hear good news about you as you have a wonderful brain. And I know what you mean about the love/hate feeling with scans.

  41. dog's eye view said, on May 19, 2011 at 6:36 pm

    Sean/Lard: you’re in my thoughts. I hope that you and your wonderful oncologist do turn the cancer around — at least give it the fight of its life — and that you feel well enough to return to your clear-headed and humane blogging.

    Joining the chorus: you are an elegant writer. May you have more time in this world. It would be a poorer place without you, so fight on, as long as you can.

    At the very least, do not let anyone start a rumor that you took off on the wings of “The Rapture.” (Puh-leeze!)

    Love to the pups too.

    Best,
    dog

  42. Corey Doan said, on May 20, 2011 at 4:20 pm

    Sorry things have changed up on you Sean. Hopefull the new treatments will kick this cancer’s butt! I’ll keep you in my prayers.

  43. Michele Cunningham said, on June 5, 2011 at 4:07 pm

    Yo!

    My Significant Other was diagnosed with GBM 4 in October, 2010. Your blog has been a great help in so many ways.
    The Temodar stopped working for him in February, so he started the Avastin then.
    About that time I found info on beta Glucans which is often given in conjunction with mono-clonal antibodies to treat various cancers. I believe MD Anderson has done some research on this too, check it out!
    Can’t hurt, seems to have helped my S/O…

    May you continue to bless so many with your gifts, as we bless you for sharing them.

  44. Laura Morland said, on June 7, 2011 at 5:08 am

    I just read an article about cell phones and brain cancer (http://well.blogs.nytimes.com/2011/06/06/piercing-the-fog-around-cellphones-and-cancer/) and suddenly thought about you, Sean.

    I’m sorry that you haven’t posted since April 20th. Please let your friends and followers know how you’re doing! Even those of us who haven’t (yet!) had the chance to meet you in person, we still care.

    I just sent you a prayer for a full recovery, and I’ll keep it up.

  45. Rita said, on June 9, 2011 at 3:03 am

    Thinking of you Sean. Love, Rita

  46. Jane said, on June 12, 2011 at 10:32 pm

    Ditto what Laura said. Let us know how you are doing — please.

  47. Laura said, on June 13, 2011 at 8:26 pm

    Thank you, Jane. I just sent another strong prayer for your beautiful brain, Sean.

    However, it’s been nearly two months since your last post. I can only imagine that you are too exhausted from the treatments to write. But please — when you can — take a moment to give us a little update. Please.

    We may only meet in cyberspace, but we are real persons who care.

  48. dog hussein dog said, on June 22, 2011 at 7:16 pm

    Thinking of you, dude. Hoping the chemicals are wiping out the bad cells and leaving you with enough good ones — and energy — to blog an update.

    You’re in my prayers, Sean. Love to you and the pups.

  49. Robert said, on December 1, 2011 at 1:25 am

    RIP I’ll miss talking to you


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