Today’s MRI scan: ‘A mixed bag’

Posted in Uncategorized by Sean Holton on August 23, 2011

First, the bad news: I’m still dealing with an extremely aggressive brain tumor that’s eventually going to kill me. And the end is not going to be pretty. There will be continuing degradation in neurological function, leading eventually to diminished quality of life, physical incapacitation and ultimately a fewprecious, final days and hours bedridden and surrounded by murmuring hospice workers administering pain medication and doing whatever else they can to keep me as comfortable as possible until I’m dead.Now, the good news: I’m not dead yet. And I’ll continue to receive treatment aimed at extending my life  for as long as possible at a level of quality that I can enjoy.

So…that’s how my MRI scan and follow-up consultation with my doctor  went today.It was pretty much a textbook example of why a cancer patient riding the infinitely looping and twisting emotional roller coaster that is a recurrentGBM  t must learn never to build mountains of hope that are too high e or dig  pits ofdespair that are too deep based simply on the results of any single MRIscan. Because the results of these scans are really all the same:”You’re either going to live or you’re going to die.Rather, you’re going to live AND you’re going to die.We just don’t know which , and we don’t really know when. On the hopeful side,  the new scan shows my chemotherapy  drugs have continued to reduce the volume of the original    tumor mass in the right temporal lobe of my brain, which one doctor once described to me as “pretty useless real estate.”On the bleaker side, the cancerhas now clearly  infiltrated and grown into more vital  areas of the middle brain and brain stem that so far have been spared from damage or unwanted pressure. Consequently I may begin to see neurological deficits compromisingthe right side of my body much as they have been compromising the left side for many weeks now.Remember my post about Half Ass? He could soon be losing even the sole remaining half of his ass that’s left Dr. George Bobustuc, my neuro oncologist, didn’t pull any punches about what this might mean. “This tumor has the potential to grow explosively, overnight,” he said. “You could fall into a deep sleep and never wake up.”Your caregiver my just come in one morning and find you. That’s some pretty scary shit. One day you’re a relatively happy, fully functioning human being and the next day you’rebasically just a 217-pound sack of potatoeslying between two snoozingJack Russell Terriers in the middle of a king-sized mattress, just waiting for a 140-pound Puerto Rican woman to decide whether to try to pick you up and haul you out of there or just call 9-1-1 and let local taxpayers pworry about it. About this time in my good-news-bad-newsmeeting with Dr. Bobustuc, I was starting to feel like I could have been either Larry or Curleyin one of those classic “Three Stooges” moments where Moe pokes them in the eyes to roust them with the command:”Wake up and go to sleep!” 

None of thigrim scenario was put on any specific timetable, of course, because Dr. B. is not the one in charge of exactly when I die or anyone else dies . He has just pledged to keep treating me with chemotherapy as long as my body can endure it and there is no compelling reason to discontinue treatment. An example of a “compelling reason” would be if I could no longer eat, drink or enjoy any other regular activities, or if I already were bedridden.

Idon’t feel anywhere near that juncture just yet, so the entire discussion today seemed very theoretical. But I know Dr. Bobustuc well enough by now, and Itrust his judgment based on his experience in dealing with GBM patients to listen closely when he says how quickly such a declinecould get very non-theoretical. As a practical matter that means thinking about and making arrangements for end-of-life-care, most likely while continuing to live in my own home and soaking every ounce of enjoyment that I can out of every second of every day.Right now I intend to spend as much of that time as possible in the company of people I love.  It’s that simple. That’s my bucket list. No jumping out of airplanes, going around the world in a balloon,bungee-jumping into a volcano  or anything dramatic like that.

Meanwhile I’ll just keep chugging along day-to-day on chemo pills and Irish whiskey like I am now and wait for my next scan. I’m also trying to remind myself that nothing really changed between Monday and Tuesday. I just have more informstion now. And information is a good thing — it never really kills anyoneSo please, please, please don’t worry about me. I am not afraid. I still refuse to be afraid. That would be a fate much worse than just curling up to die. If there is any single thing anyone has learned fromfollowing my journey on this blog for these past two years, it is that. Do not be afraid. fear is a waste of time, and a waste of life.

I’ll be staying in touch here with future updates on my condition, medically, attitudinally and otherwise.


59 Responses

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  1. Janice Blase said, on August 23, 2011 at 9:35 pm

    Sean…you live your life more fully than most of us who don’t know yet know what terminal condition we have. The people you love are just as lucky to be able to spend time in your company as you are to spend time in theirs. Chug on!

  2. Jamie said, on August 23, 2011 at 9:41 pm

    bungie jumping is over rated. Time in bed with Jack Russell terriers is joy worth having. I hope you continue to enjoy your existence and allowing us to share it with you.

  3. Kathryn Quigley said, on August 23, 2011 at 10:33 pm

    Dear God (whom I sometimes believe in and sometimes not), please do not let Sean die in his sleep because it will freak out the dogs. Or not, which would be weirder.
    In all seriousness, I send you hugs and hugs.

  4. Craig Crawford said, on August 23, 2011 at 10:52 pm

    I’m still betting Irish Whiskey trumps chemo.

  5. Dexter said, on August 23, 2011 at 11:21 pm

    Climb every mountain,
    Search high and low
    Follow every byway
    Every path you know

    Climb every mountain
    Ford every stream
    Follow every rainbow
    ‘Til you find your dream

    A dream that will lead
    all the love you can give
    Every day of your life
    For as long as you live

  6. Bob Sipchen said, on August 24, 2011 at 12:01 am

    John Glionna brought this to my attention via Facebook. Strong work! Way to live, brother. Thank you for your infectious courage.

  7. dtkeating said, on August 24, 2011 at 12:24 am

    “Rather, you’re going to live AND you’re going to die.We just don’t know which , and we don’t really know when.”

    I read it and re-read it and read it again. I feel like Ilsa saying to Rick, “You do the thinking for both of us.” It seems lazy to make you do all the thinking, but you’re so much better at it.


  8. Claudine Hellmuth said, on August 24, 2011 at 1:25 am

    Thinking of you every minute!

  9. Lisa said, on August 24, 2011 at 6:04 am

    I love your non-bucket list list. You’ve got a great perspective. Thanks for sharing and for reminding all of the important things.

  10. Alan said, on August 24, 2011 at 6:11 am

    Yeah, I’ll take the dogs every time, too. And thanks for the attitude. It’s inspiring.

  11. Elizabeth Maupin said, on August 24, 2011 at 6:56 am

    Sean, you’re my hero.

  12. Keith said, on August 24, 2011 at 8:05 am

    Sean, I know you’re putting up a good fight and wouldn’t have it any other way. That’s the attitude to have and to keep during this fight.

    You’re in my thoughts and prayers.

    It’s not yet time for that nap on the king-size bed.

  13. Justus said, on August 24, 2011 at 8:31 am

    Enjoy every minute–the sun rising and the birds chirping and don’t forget Mr Jameson.

  14. Carolyn said, on August 24, 2011 at 9:38 am

    Hi Sean,
    Your brother Tim and wife Julie are two of my dearest friends. Tim was actually born the same day and year as I was, which makes us both “seasonally young”. Julie I have worked with each other for many years and I adore her. I have read your blogs from the beginning and kept up with your progress and not so easy times too. Through it all, I have seen you display this courage, truth and great reality that so many of us are so afraid to face. I don’t think you know how many people you have touched through your blog in such a positive way. For me, you have brought the “hummmm” factor back into my life. You write a sentence and my heart stops and my breath is taken away. It’s the honesty and sheer purity in words that we are usually drawn to escape because of fear. You put that sense of calm and clarity to life’s mystery. Some people live a life time and only “dream” they could make a difference but Sean, you have. You continue to strenghten anyone that dreams they can live to make a difference by your inspiration and sense of showing us that it is the simple things that make us leave our “mark” on what we know as life now. My prayer groups continue to pray for you and I will always thank you for the way you have put the laughter into my sadness and tears in my joy. But most of all, the brillance of Sean Holton – a man of golden words will always live in my heart. God Bless Sean – Carolyn Radman

  15. patebooks said, on August 24, 2011 at 9:44 am

    Best bucket (or non-bucket) list ever.

  16. Jane said, on August 24, 2011 at 10:11 am

    Sending some healing power through the origami cranes.

  17. RebelliousRenee said, on August 24, 2011 at 11:18 am

    Sean… you are an inspiration as how to live.
    now give those 2 dogs a big kiss and get back to living.

  18. Vanessa said, on August 24, 2011 at 11:44 am

    Sean! Sending lots of Puerto Rican Sunshine your way! You are an inspiration..

  19. lmorland said, on August 24, 2011 at 2:10 pm

    Sean, you don’t know me (I ‘met’ you through Craig), but as it happens I’m in Florida for a few days. Yesterday I was driving on I-4 through Orlando and passed a truck for the Orlando Sentinel. Of course, I instantly thought about you. I’m so glad that the chemo is doing its thing on the old tumor, but very sorry to learn that it’s spreading.

    You are an amazing man, Sean, and I’m so glad to be able to know you through your posts. The people you love are lucky indeed!

  20. Dolores Beasley said, on August 24, 2011 at 2:14 pm

    Ditto to all the comments above (except I can’t send Puerto Rican sunshine–CA’s will have to do; I’m unaware of origami crane healing power, and I always believe in God). Thinking of you…and smiling…

  21. Kirsten Alicia Sheridan said, on August 24, 2011 at 2:52 pm

    I hope you get to spend LOTS of time with your dogs & your loved ones. Love & light to you.

  22. Elaine Kramer said, on August 24, 2011 at 3:26 pm

    Sean, You never cease to amaze, inspire and – even in these times – entertain. Even though I sound like Mr. Rogers: Thank you for being you.
    Sending love.

  23. Molly BB said, on August 24, 2011 at 3:31 pm

    I LOVE you Sean – we are all going to live until we die! While seemingly healthy, I have no promise of tomorrow. Cherish the moments – and all those other cliche ‘things’ we say…no pity party on Page 500!! Hope to see you in January! Hail! Hail! Love, Molly BB

  24. De-an said, on August 24, 2011 at 6:42 pm

    Sean, You are my hero. And let me know if you run out of Irish whiskey. I’ll be right over.

  25. anothergoodday said, on August 24, 2011 at 8:19 pm

    You have no idea who I am. And I had never seen your blog until today. But thank you for sharing your life with us. Thank you so much.

  26. Danee Kaplan said, on August 24, 2011 at 9:53 pm

    Your friend Claudine sent me over. She doesn’t know me either- we are FB friends because I love her art. But I am nurse and I have learned too that life is precious. I am so happy to hear that our bucket list is all about love and loved ones because at the end of the day and the end of life that is what mattes most.

  27. CindyO said, on August 24, 2011 at 11:45 pm

    Sean, I just stumbled across your blog on the ever-fascinating internet, and am very grateful for your approach to this challenge.
    My husband was diagnosed with a GBM in March of this year, and we are riding that very roller coaster you mentioned. He is 50 years old, in great shape (other than the minor brain tumor issue), and is doing fairly well at the moment. He had a total resection in March, chemo/radiation in April and May, shingles in June, another major seizure in July, and a 2nd surgery in early August for what they thought was tumor regrowth but turned out to be pseudoprogression. It’s been a whirlwind, and although we’re grateful for this time to catch our breath, we’re very aware that the monster is still hiding in the closet, waiting to jump back out at any time and yell “BOO!”
    We have very different approaches to the situation – he revels in routine, and exactitude, whereas I long to catch a train to anywhere that isn’t here and to accumulate life changing experiences. Oh, wait, I am having those – they come to my house and find me whether I want them to or not. 😉
    The whole process takes my breath away on a regular basis. I’m thankful for your honesty and how real you are. I don’t know what’s ahead – but hearing about someone else’s experiences makes the journey more palatable.
    I wish you much love and laughter with friends, family and your Jack Russells. Life IS good, and being able to share the ride with others makes it even better. Thanks for being the tour guide for so many people who don’t have the words to describe the journey. CindyO

  28. tonyb39 said, on August 25, 2011 at 7:24 am

    Amazing piece from an AMAZING guy..

  29. Paul Lester said, on August 25, 2011 at 3:35 pm

    Sean, you are one of the smartest, funniest and nicest people on this Earth. All of us here are blessed to know you. Enjoy these moments with your loved ones and drink a generous portion of Jameson tonight! Love you, man!

  30. Michele said, on August 26, 2011 at 12:18 am

    Sean – you are exactly where you need to be – surrounded by love. Hanging out with my Jack Russell Terrorist is one of my very favorite activities :).

  31. Bec said, on August 27, 2011 at 12:55 pm

    You rock! Thank you for your inspiration and strength.

    (wife of GBM-applicated husband)

  32. Bec said, on August 27, 2011 at 12:55 pm

    typo, applicated = afflicted.

  33. lmorland said, on August 27, 2011 at 1:54 pm

    Hi, Sean — I wrote you on August 24, 2011 at 2:10 pm, but my comment ‘is still awaiting moderation’. Is it possible that you overlooked it?

    In any case, I send you energy and best wishes from Berkeley, California (where I am now).

  34. Dog's Eye View said, on August 28, 2011 at 11:24 pm

    Very glad to see a new post from you, Sean.

    May the chemo and Jameson’s keep you here with us. Not to mention the JRT companions, and your human loved ones.

    Your whole blogpost was compelling, but living up to the passage below is a real challenge:

    “I am not afraid. I still refuse to be afraid. That would be a fate much worse than just curling up to die. If there is any single thing anyone has learned fromfollowing my journey on this blog for these past two years, it is that. Do not be afraid. fear is a waste of time, and a waste of life.”

    Thinking of you, and glad you are going to see another Labor Day and end of summer.

  35. Becky Bultemeier said, on September 12, 2011 at 12:10 am

    Thinking of you.

  36. Steve Doyle said, on September 13, 2011 at 1:26 pm

    Hang in there, Sean. Your strength is our strength.

  37. Faire said, on October 26, 2011 at 6:05 pm

    I’m crocheting squares for blankets for kids with cancer–never been much at prayer, but I think of each stitch I hook as a prayer–for those kids and for you. Just sayin’–

  38. blondewino said, on October 26, 2011 at 7:39 pm

    Sean always thinking of you and your amazing brain…keep us in your thoughts as we need you more than you need us!

  39. Colorado Bob said, on October 28, 2011 at 11:15 pm

    I will not measure human pain, misery, or power with you. My little world is easy , when I measure the millimeters against you.
    Thank – you for the smart words, and clever thinking. Something I always worked on, but never made.

  40. Colorado Bob said, on October 28, 2011 at 11:50 pm

    Speaking of smart words ….
    Eddie Vedder w/ The Doors – Roadhouse Blues (Los Angeles ’93) HD

  41. Colorado Bob said, on October 28, 2011 at 11:55 pm

    Keep your eyes on the road, and your hands on the wheel.

  42. Colorado Bob said, on October 29, 2011 at 12:23 am

    One more thing –
    Time Loves a Hero

  43. Colorado Bob said, on October 29, 2011 at 12:27 am

    ” As a coward I admire his courageous ways “

  44. pam vieyres said, on October 29, 2011 at 5:49 pm

    Hi Sean. It’s Pam from across the big pond checking in. I know that Brian is there with you and I’m sure you’re sharing many special moments together. My hope for you is that you are able to accomplish your bucket list by spending as much time as possible with your loved ones. You have touched so many lives both through your presence and your insightful writings. You are a remarkable man and I am honored to have walked down the aisle with you at Sue and Brian’s wedding!
    Enjoy your time with your loving siblings…you are all truly blessed to have one another.
    I wish you peace and love in your heart, Sean.
    With love, Pam

  45. Katherine Graham Cracker said, on October 29, 2011 at 8:10 pm

    Happy Birthday Lardass !

  46. Sheila The Chef said, on November 7, 2011 at 8:26 am

    Sean aka LARD ASS!!!! I just found out. I’m sorry I didn’t pay attention until now. Did you know I got married?….you know how honeymooners are….

    By now I’m sending this thought into the cosmos so LISTEN UP BUDDY!! You are one of the best human beings in my Middle Age. You live your thoughts and your heart on your sleeve. You have lived large in your blog friends lives. I remember you and I will remember you to other people.

    Love you and hang in there my friend!!

  47. Colorado Bob said, on November 8, 2011 at 2:12 am

  48. Dog's Eye View said, on November 8, 2011 at 1:02 pm

    Sean: you and your loved ones are in my thoughts.

    I am going to do a bad-ass bike ride for you, as soon as I finish this project. Log some miles and think about what makes the world great. (And not so great or outright inane, and therefore fit to write or blog about.)

    Cannot promise I will end up in Gloucester, but shall think of you when I get up there.

    Shall also tip a Jameson’s to you, and eat a beignet or two for you in N’awlins later this month.


    Lisa aka Dog’s Eye View

  49. Mike said, on November 16, 2011 at 11:14 pm

    Sean, i was touched today more than you or your family will ever know. You are quite the person, I wish I had gotten to know you years ago. God bless, you will be in my thoughts and prayers.

  50. Cindy Webb said, on November 18, 2011 at 3:24 am

    I just discovered your blog, Sean, and I wondered how you were doing. I couldn’t find any posts more recent than this August one.

    Love to hear from you.
    Cindy from Salem, OR
    (member of CSN)

  51. claudine hellmuth said, on November 29, 2011 at 12:05 pm

    Rest in peace Sean. I’ll never forget your wit, humor, and grace in life and while fighting brain cancer. You are deeply missed. Love you now and always. xoxoxox

  52. Melissa said, on November 29, 2011 at 1:24 pm

    Rest in peace Sean. We’ll all miss your strength, humor, and the way you remained straightforward and graceful during your fight.

  53. Anthony Moor said, on November 29, 2011 at 1:25 pm

    Hello Sean,

    I just read your last post. Thank you for the steel and the smile in your narrative. It reminds me of the way I saw you face many things when we worked side by side before cancer. I’d like to try and carry a bit of that with me. Rest in peace.

  54. Amy Noland Vorbeck said, on November 30, 2011 at 12:05 am

    Rest in peace Sean. We love you! Enjoy your heavenly Irish whiskey tonight! Xoxoxoxo

  55. Mike Oliver said, on November 30, 2011 at 4:42 pm

    Rest in Peace Sean.

    Today, Birmingham News ME Chuck Clark, who used to work at the Sentinel, shared some Sean wisdom from a few years back.

    Here’s Chuck’s note, followed by Sean’s list::

    A colleague from the Orlando Sentinel passed away yesterday after fighting brain cancer for the past two and a half years. Sean Holton was an excellent editor, in terms of seeing the potential for a story, coaching the reporting and helping craft the storytelling.

    Several years ago, in his own unconventional way, Sean sent out a unique treatise on being a journalist. I fished it out last night, read it for the eleven hundredth time, laughed out loud — and thought that it would be something you would appreciate.


    1. Don’t care.

    2. Don’t try.

    3. Be negative.

    4. Tolerate mediocrity in others.

    5. Rationalize mediocrity in yourself and others.

    6. Hide out in your job.

    7. Build up a small piece of your job into more than it is, and hide behind that.

    8. Be blithe about your mistakes.

    9. Hide your mistakes.

    10. Make people afraid to admit and correct their mistakes.

    11. Don’t connect the quality of everything you do to the quality of the overall paper.

    12. Don’t connect the quality of your colleagues’ work to your professional self-interest.

    13. Don’t respect deadlines.

    14. Don’t learn and respect the newsroom process all the way through the copy desk.

    15. Don’t make that next phone call.

    16. Don’t read that story printout one last time to make sure everything is exactly right.

    17. Believe “good enough” is actually good enough.

    18. Dwell on the shit that flows downhill, and don’t set the fires that will burn uphill.

    19. Kid yourself that mediocrity deserves an “achieves standards” review.

    20. Take no responsibility for your decisions, especially the stupid ones.

    21. Cultivate your own martyrdom and encourage martyrdom in others.

    22. Be a duplicitous backstabber.

    23. Relish the blame game.

    24. Be afraid to speak your mind.

    25. Be afraid to think big.

    26. Be afraid to be an aggressive editor.

    27. Be afraid to kick back a story when it’s not good enough.

    28. Be afraid to be edited aggressively.

    29. Throw a snit when a story is kicked back to you.

    30. Hoard power.

    31. Confuse power with leadership.

    32. Manage through fear and control.

    33. Kiss up to your bosses and kick down at your subordinates.

    34. Treat full-grown adults like children just because they happen to work for you.

    35. Forget about all the people around you who are working their asses off.

    36. Don’t treat colleagues with professionalism and respect.

    37. Don’t get reviews finished on time.

    38. Make everything personal.

    39. Take everything personally.

    40. Bitch about the law of gravity.


    (Version 3.0: Release date, Jan. 6, 2003)

  56. Missy said, on December 2, 2011 at 9:21 pm

    We’ve never met.
    I’ve been following your blog for a long time and just found out about your passing. My heart breaks for your family and friends.
    Thank you for sharing your life with us. You are one of the true heroes.

  57. Carolyn Radman said, on December 3, 2011 at 8:58 pm

    On November 29,2011, we lost one the greatest human beings that ever lived. Sean, the “change” that you impacted everyone you met, read your blog or had the honor of meeting will live on. Your strength was inspiring; your honesty admired and your humor priceless. On one of my worst days, I could depend on reading your blog and my spirits immediately lifted. I will miss all the beautiful words along with the sheer common sense and heartfelt truth you so willingly shared. But our lives are a “vacation” and one day, like you, we will go home. However, there is no doubt that you are mircomanaging even the pearly gates! So to you,O Ilift my Jamison and just say WELCOME HOME SEAN! Your memory will always remain in my heart. I will continue to re-read the printed blog – the brillance you exhibited in words is like no other. I’ll remember you in words today and will meet you in those words “Same Time Tomorrow”!

  58. anon paranoid said, on December 11, 2011 at 12:15 pm


    Sorry I was late arriving for your memorial, but I know that you would be forgiving for my lateness. You have shown to the world that it is better to look ahead then to dwell on the past and things which can not be changed.

    You have a wonderful family and many friends who loved you. May the Lord give you the Peace and Rest you so richly deserve. Now you can write for those whom you’ve been reunited with who passed before you.

    Take care and friend and God Bless you.

  59. Donna O'Neal said, on December 24, 2011 at 7:36 pm

    Dear Sean,
    It’s Christmas Eve, I just picked up the mail and opened a Christmas card from Ann Hellmuth, which is how I learned about your transition. Although I didn’t work with you for long at the Sentinel, as I transferred to Tallahassee in 1987, you were always such an inspiration and model for excellence…for me and many others. God bless you, your family, your friends and all the people whose lives you have touched….and continue to, even in death.

    Donna O’Neal
    The Orlando Sentinel 1985 – 1993

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