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  • Kurt Brindley 6:29 pm on February 11, 2017 Permalink | Reply
    Tags: , , , , leukemia, , lung gvhd, , , , , , ,   

    The Purpose of Pain 

    Kurt receiving acupuncture treatment for his many ailments

    When it comes to physical pain, it’s purpose is hardly in question: It focuses us to where our immediate attention and action is required.

    We accidentally rest our hand on a hot, stove top burner and, without our sense of pain, our hand, if it weren’t for our sense of smell, would become cooked well enough to serve up at the next meal.

    We could laugh at this, but sadly and horrifically there are some who do not experience the sense of physical pain due to a rare condition known as congenital analgesia.

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    • Jackie Oldham 9:42 pm on February 11, 2017 Permalink | Reply

      So interesting that you wrote on this topic today. I have a life-long diagnosed depression. And in recent years, I have come to understand the truth and power of using the depressed state to withdraw, ruminate, and most importantly, allow my ruminations to guide me to solutions to the source of my despair. I was in the middle of working out a current problem when I read your post.

      Liked by 3 people

      • Kurt Brindley 3:19 pm on February 12, 2017 Permalink | Reply

        I’m sorry to hear about your condition, Jackie. It sounds like you haven’t let it determine your fate and that you’ve become a forward thinker in regards to managing it. Thanks so much for sharing your knowledge with us, my friend. I hope others like me will gain from it.

        Liked by 2 people

    • Rajiv 12:37 am on February 12, 2017 Permalink | Reply

      Very good post. It gives much food for thought

      Liked by 1 person

    • andysmerdon 1:45 am on February 13, 2017 Permalink | Reply

      Thanks Kurt – for me depression and anxiety are not terribly rewarding. Having said that I am caused by the condition to look at what it is that is pissing me off, with a good deal of scrutiny – the key though, is coming to terms with whatever you find, because sometimes its not a pretty picture. I’m thankful for the subject matter it sometimes gives me for a poem or two, but I’d happily live without it – Take it easy mate and Thanks again.

      Liked by 1 person

      • Kurt Brindley 12:19 am on February 14, 2017 Permalink | Reply

        I’m sorry you have to deal with that, brother; I’m grateful to you for sharing this for others to learn and hopefully heal from.

        Liked by 1 person

        • andysmerdon 2:02 am on February 14, 2017 Permalink | Reply

          Its a subject that needs to be spoken about by guys – we tend to think we are to tough for this. Take it easy Kurt :)

          Like

    • avwalters 11:37 am on February 13, 2017 Permalink | Reply

      Another symptom of depression is lethargy, the inability to move forward. Maybe this is the “it” for which you’re searching. That lethargy may mobilize you from taking drastic or inappropriate action. (Maybe, here the rumination occurs.)

      Liked by 1 person

      • Kurt Brindley 12:22 am on February 14, 2017 Permalink | Reply

        Very interesting concept, avwalters. I guess it would be similar to the aches and pains one feels from an infection that forces us to remain in bed to heal. Thanks for sharing this.

        Like

    • KatieComeBack 7:20 pm on February 13, 2017 Permalink | Reply

      I’ve had some issues with not recognizing pain – while I feel it, I seem to have quite a high tolerance for it. That got me into some medical trouble a couple of times (gangrenous gallbladder and walking around for weeks on a broken foot.) I think the same can be true for recognizing my mental state….I have a high tolerance for it, so I don’t always know when I’m in trouble.

      Not sure that adds anything to the convo except I can relate.

      Liked by 1 person

      • Kurt Brindley 12:26 am on February 14, 2017 Permalink | Reply

        I don’t have a necessarily high tolerance for pain; however, I do have a high resistance toward going to the docs to deal with pain, which didn’t serve me well when I resisted for 3 weeks before getting checked what turned out to be a blood clot in my leg that revealed my leukemia.

        Liked by 1 person

        • KatieComeBack 5:46 pm on February 14, 2017 Permalink | Reply

          That’s pretty common. After my gallbladder tried to poison me I’ve done a much better job listening to the whispers of my body….

          Like

  • Kurt Brindley 5:44 pm on July 28, 2016 Permalink | Reply
    Tags: , board games, , , , chemo brain, , , , , , leukemia,   

    My Chemo Brain Counter-Offensive 

    So… yeah. I’ve been having some chemo brain issues for quite a while now and I’m in search of interesting ways to build up my brain muscle to counter these “cognitive disorder” side-effects, as my neurologist so neatly calls them.

    I’ve never been a board game – or any game for that matter – kind of guy, but I’ve read and I’ve heard anecdotal evidence that board games do help with one’s focus and clarity issues.

    With this anecdotal evidence as my impetus, of course I went to Amazon, the event horizon of the internet, and searched around for what the best board game for my particular interests would be.

    And I found this:

    Cards Against Humanity
     
    As you can see, it tags itself as “A party game for horrible people.” And while I don’t feel that I’m all that horrible, after reading a few of the many thousands of reviews, it does seem like a game that would appeal to my interests.

    Does that make me so horrible?

    That was rhetorical.

    Anyway…

    Which brings me to the point of this pointy post…

    Research, with you being my source information.

    Have you played the game? And if so, what do you think of it? Is it fun? Challenging? Stoopid? Do you feel you have a stronger brain because of your playing it?

    And don’t worry, just because you played the game doesn’t mean I will judge you as a horrible person.

    Necessarily…

    I will, however, admire your courage for admitting it.


    If you’re not familiar with the game, you can learn more about it here.

     
     

     
    • Johanna Rosberg 5:54 pm on July 28, 2016 Permalink | Reply

      I’ve played the game once at a party. It is horrible, but mostly pretty funny, too! I definitely wouldn’t say that it gave me a stronger brain, though, haha.

      Liked by 1 person

    • V. Gabow 6:10 pm on July 28, 2016 Permalink | Reply

      One of my all-time favorite games, if you happen to have a few gutter minded friends as I most definitely do, I’d highly recommend it for some laugh therapy. As Johanna said, I don’t know about a stronger brain, but they say laughter is the best medicine, so maybe? :)

      Liked by 1 person

    • little monkey 7:16 pm on July 28, 2016 Permalink | Reply

      I’ve played it a few times. With my adult kids and their friends. It’s very very funny, and can be very, very uncomfortable as well, depending on who you are playing with. A Particularly suitable game for those that tend to fall on the snarky side of the spectrum. I think trying to make those unusual associations, and the sheer level of horror/humor at your own depravity exercise the brain. I don’t think I’m a horrible person, but I definitely needed a bath after I play.It’s a symbolic bath, but necessary.

      Liked by 2 people

    • Produce Your Freedom 7:25 pm on July 28, 2016 Permalink | Reply

      I used to play this quite a bit mostly with college friends having a few adult beverages. It’s really funny and infinitely replay able since it depends more on the group you are playing with than the cards themselves. It can get really creative and the answers people choose and come up with might shock you. Great game, but I wouldn’t count on it to help with brain development. If you like strategy games you might want to check out Settler’s of Catan. A bit geeky but it can be fun.

      Liked by 1 person

    • maggie0019 7:34 pm on July 28, 2016 Permalink | Reply

      Marbles the Brain store has lots of good puzzles/games to help, too. And Mom recommends taking krill oil, if you aren’t already. As an aside – now Mom wants to get this game and have some evil fun. Woof! Love, Maggie

      Liked by 1 person

    • JJ_Dugger 8:18 pm on July 28, 2016 Permalink | Reply

      Played, it’s hysterical, and yes horrible, but then my friends and I have a sick sense of humor! Enjoy! Prayers for your healing going up.😀

      Liked by 2 people

    • Christin 11:57 pm on July 28, 2016 Permalink | Reply

      I’ve played it, & own it. Its my favorite card game! And it’s totally horrible but that’s okay!

      Liked by 1 person

    • Robyn Elliot 5:41 am on July 29, 2016 Permalink | Reply

      I think I could have invented this game. Never heard of it, but will definitely take a look – particularly as it will suit my menopausal brain which renders me with ZERO TOLERANCE over just about everything these days. Kurt, it may not clear the brain fog, but you’ll enjoy the hilarity of hate at least!

      Liked by 1 person

    • kristianw84 9:38 am on July 29, 2016 Permalink | Reply

      This game is is so funny! I don’t think it strengthened my brain. It is more like an adult version of apples to apples. The more people you play with, the funnier this game is. I don’t think anyone who plays it is a horrible person, it’s all in good fun! ;)

      Liked by 1 person

    • Doug 11:23 am on July 29, 2016 Permalink | Reply

      My favorite cards are the multiples, where you play two or even three answers to the prompt. You can get really creative with those. Also trying to match your answer to a particular person’s humor is good exercise. It good fun, but rude.

      Liked by 2 people

    • Don Massenzio 10:36 pm on July 29, 2016 Permalink | Reply

      I’ve played it. It’s a great way to really get to know your friends and family in ways you might not have dreamed. My wife, for instance, was Googling many of the terms. That explains so much.

      Liked by 1 person

      • Kurt Brindley 2:22 pm on July 30, 2016 Permalink | Reply

        As popular as this game seems to be, I’m surprised I’ve never heard of it before. I’ve lived the sheltered life, I suppose. :)

        Liked by 1 person

    • KatieComeBack 9:08 pm on August 10, 2016 Permalink | Reply

      It’s an equal-opportunity offender. And I play it with my teenage kids, because I am the coolest mom evah, yo.

      Liked by 1 person

  • Kurt Brindley 10:07 am on April 1, 2016 Permalink | Reply
    Tags: , , , , , leukemia, , , , , , , , writing therapy   

    The Power of About 

    THIS ARTICLE ORIGINALLY APPEARED ON MEDIUM


    I may be mistaken, but it is my belief that we’ve all been to that dark, lonely place at least once or twice in our lives where we, and the lives we have led, seem…

    Insignificant.

    Less than.

    Pointless.

    It’s a scary place and one which I suspect, and hope, the majority of us visit only infrequently and fleetingly because our lives are fulfilling and rewarding enough to steer us clear from the depression that can lead us there.

    However, I also suspect that there is a significant minority of us who visit this dark, lonely place more often and for longer periods than most since, according to NAMI, the National Alliance on Mental Illness, nearly 19% of the United States’ adult population experience some degree of mental illness throughout the year [1]. And, according to the National Institute of Mental Health, major depression is one of the most common mental disorders in the United States [2].

    I, myself, became a frequent visitor of this dark, lonely place not long after I began taking high doses of the steroid prednisone to combat a deadly disease that was destroying my lungs, and one which I was given little chance of surviving.

    It was a hard enough to mentally process that my life may soon be ended by an aggressively fatal disease — pretty tough for anyone to process, I would imagine — but couple that bummer news with a steroid that induces psychosis-like side-effects and, yeah… double bummer.

    Consequently, it wasn’t long before I found myself spending nearly as much time in that dark, lonely place as I was out of it.

    It’s hard to explain what I and my mind were going through whenever I visited there. I’m not sure there is a way to describe it wholly in just a few words. It is both a tangible and intangible feeling. A cold feeling sometimes. A heavy feeling other times. But it was almost always a feeling of pointlessness. A feeling of… Why bother?

    I was dying. My body had failed me and I had failed my family. The only thing I felt I was good for now were my less than adequate disability checks. Were I gone, my life insurance payout would have been much more rewarding and helpful for those whom my absence would release from the burdens my illness had placed upon them.

    Yeah… I was down there in that indelible darkness of depression pretty deep.

    Fortunately for me I had a saving grace — several of them, in fact.

    One, the primary one, was a support network of family and friends who loved me, cared for me, and prayed for me.

    Another, was that I like to write.

    The Writing Hand

    The Writing Hand

    I began blogging shortly after my leukemia diagnosis. Nothing too deep or introspective — though scared, I was completely confident I was going survive — just updates to keep my friends and family informed of my health and happenings during my treatment.

    But months later after learning my lungs were slowly dying away as a side-effect result from my bone marrow transplant, and having to begin a hefty prednisone regiment in an effort to slow the dying process down, my positive perspective on things changed significantly.

    Though the drug-induced and drastic mood swings made it difficult to focus, I began to blog more often and about more personal matters. And while I regard my blogging experience during this difficult time as a very beneficial, therapeutic activity — an activity I presume many others regard beneficial as well, for a simple Google search of the term “writing therapy” resulted in around 259,000,000 results — it wasn’t helping me to shake the persistent feeling of irrelevance; of feeling that I others would better off if I were dead.

    Fortunately for me, since I was spending more time thinking deeply about my life for my blog, I eventually began tinkering with my blog’s “About” page.

    And this tinkering proved to be yet one more saving grace; for it led me on a path to try to discover things about myself that others might find interesting enough to inspire them to read more of my writing.

    And once I began thinking in more of a self-promotional, third-person kind of way about my life, I began realizing and rediscovering things about myself that I found to be very special and unique.

    For the next week or so, I stopped blogging altogether and, like a gold digger after finding his first valuable nugget, I worked passionately on mining through my past to dig up and write down all the meaningful nuggets I could find.

    And when I was finally satisfied that my life was properly represented on the page, I began to craft the long, meaningful list of me into a voice that, when others read it, would be heard distinctly as mine.

    When I was finished*, my “About” page was more than just being about me… it was me.

    And even now when reading this long and winding written documentary of me, I am filled with a sense of gratitude and purpose so powerful that, even if I were to once again visit that dark, lonely place, I could never do so feeling as if my life were pointless and without meaning.



    1. https://www.nami.org/Learn-More/Mental-Health-By-the-Numbers
    2. http://www.nimh.nih.gov/health/statistics/prevalence/major-depression-among-adults.shtml


    *As I live and grow, so too does my “About” page. It will never be finished completely… until I am.

     
  • Kurt Brindley 3:44 pm on March 14, 2016 Permalink | Reply
    Tags: , AML, bone marrow donors, , , , , Donors, , , , leukemia, ,   

    On why I choose to refer to those who help fund my film as “Donors”… 

    Admittedly, with these newfangled campaign funding sites such as Indiegogo and Kickstarter, where they have their “Backers” or “FUNders” or whatever else they call those who give money to a money-raising campaign, me referring to my supporters as “Donors” seems a bit anachronistic.

    However, there is a very important reason as to why I do.

    It is, perhaps, a term the most near and dear to my heart…

    For, it wasn’t a “Backer” who was willing to sacrifice her time, effort, and self for someone she didn’t even know…

    It wasn’t a “Backer” who had to take off work, find her way to the hospital, prepare herself mentally for an operation, sign all the forms, wear the silly patient outfit…

    It wasn’t a “Backer” who had to endure the days of pain and discomfort caused by the operation…

    And it wasn’t a “Backer” who blessed me with her bone marrow.

    She was a Donor.

    A Bone Marrow Donor.

    And she saved my life.
     

    Please consider becoming such a selfless and life-giving Donor as is mine.


     

    BONE MARROW DONATION FAQS

     
     

     
    • sanseilife 4:05 pm on March 14, 2016 Permalink | Reply

      Blood donors, platelet donors, and bone marrow donors. We are here for you.

      Liked by 1 person

    • wscottling 5:01 pm on March 14, 2016 Permalink | Reply

      I used to donate blood every year. I can’t anymore… they turned me away the last two times I tried. For the life of me, I can’t remember why. >_< I believe it has something to do with the medications I take, but I honestly don't remember.

      Liked by 1 person

      • Kurt Brindley 5:04 pm on March 14, 2016 Permalink | Reply

        Could be. Seems those requirements change occasionally based upon latest research. You should check to see if you’re able to donate bone marrow. It is as simple as a cheek swab.

        Like

    • theycallmebetty 5:55 pm on March 14, 2016 Permalink | Reply

      Well said! As the spouse of a BMT recipient I echo your statement. Although she is still fighting to survive GvHD, without her donor she wouldn’t be here to fight.

      Liked by 1 person

      • Kurt Brindley 9:11 pm on March 14, 2016 Permalink | Reply

        I’m sorry to hear she’s having a tough time with the cursed GVHD. If you think she’d like a copy of HOW NOT TO DIE, please email me your mailing address via my contact page and I’ll mail one out to her. Or, I could just email an electric copy if an ebook is better. If you prefer not, I understand. She’ll be in my prayers, regardless… as will you as her caregiver and biggest supporter, theycallmebetty.

        Like

    • Alli Farkas 11:03 am on March 15, 2016 Permalink | Reply

      Signed up 20 years ago. Haven’t been needed yet…

      Like

  • Kurt Brindley 7:49 pm on November 5, 2015 Permalink | Reply
    Tags: , , eye disease, , , , leukemia, , lists, , , , ,   

    HOW NOT TO DIE: In 13 Easy Steps 

    On this day five years ago, I received the news that a recent lung biopsy showed that my lungs were inflicted with a severe form of graft versus host disease (GVHD) called bronchiolitis obliterans syndrome (BOS). BOS, I came to find out, was a known but uncommon side-effect resulting from a bone marrow transplant (for leukemia) that I had had earlier in the year. And by severe I was told it meant the BOS was incurable, non-reversible, and, in most cases, aggressively fatal. I was also told — because I had asked and insisted on an answer — that, according to a National Institutes of Health (NIH) study of the time, BOS had only a 13%, five-year survival rate. In other words, there was an 87% chance that within five years I would be dead.

    Well, it’s been five years and here I am – a newly minted Thirteen Percenter.

    Can a brother get a “Hell yeah?”

    Hell yeah!

    Anyway… at my most recent appointment with my oncologist, in addition to his standard declaration whenever he sees me of, “So, I see you’re still alive,” he also declared that my present condition may just be a miracle of sorts because it appears that my incurable BOS may have actually been cured… somehow.

    I don’t think I would be overstating if I said that, because of all my goings on these past five years – goings on such as leukemia, GVHD (and not just of the lungs, but also of the eyes, liver, and intestines), prednisone side-effects, cytomegalovirus (CMV), and heart failure to name a few – I think I’ve learned a thing or two about life in general and living it in particular.

    Now, if you search around this site, I’m pretty sure you will find that much of my writing, mostly encapsulated in my haiku, reflects a lot of the insights and learning I’ve garnered from these goings on. However, just because I like you all so much and don’t want you to have try to sift through this site for days on end in an effort to discover these insights and learning, and because short, pithy lists are all the rage these days, I will identify for you the top thirteen things I learned about how to not only not die, but mostly about how to best live your life filled with happiness and meaning, regardless whether death is looking you directly in the face or not.

    Cool?

    Okay, so here we go…

    (More …)

     
    • wwwpalfitness 7:56 pm on November 5, 2015 Permalink | Reply

      My mother had Leukemia with the highest mortality rate within a year. She went through it all, then was told to do a bone marrow transplant. Being she was clear she was advised to transplant her own bone marrow months before she had it taken out before the transplant to keep any bad reactions. So I know what you went through. She managed to live 15 years and is the third highest on the list of survivors with the deadliest Leukemia. It really was scary but she squandered the gift she was given, sadly.

      Liked by 2 people

    • devenbhagwandin 8:02 pm on November 5, 2015 Permalink | Reply

      Amazing piece. Amazing read. I hope you don’t mind, I shared this on my FB. Everyone should read this.

      Liked by 2 people

    • KIA 8:03 pm on November 5, 2015 Permalink | Reply

      Inspiring and hopeful. Cancer deserves the beat down

      Liked by 2 people

    • Joy Pixley 8:05 pm on November 5, 2015 Permalink | Reply

      Happy to give you a big HELL, YEAH! And wow, what a great list of things to remember to do — as you say, it may not help us live longer, but any one of those is likely to make you live better in whatever time you have left. Congrats on still being alive and kicking death’s ass.

      Liked by 3 people

      • Kurt Brindley 8:15 pm on November 5, 2015 Permalink | Reply

        Thanks so much, Joy. Your hell yeah is awesome and greatly appreciated. :)

        Liked by 1 person

        • Joy Pixley 8:44 pm on November 5, 2015 Permalink | Reply

          I actually had the opposite experience with the odds with my (much less serious) thyroid cancer diagnosis. Through asking a lot of questions and reading all the published medical studies on my treatment options and then conducting a statistical meta-analysis of them (because that’s how I roll), I determined that I had about an 88% chance of doing fine if I chose a less aggressive treatment that would allow me better life quality (i.e., keep the other half of my thyroid and not depend on pills the rest of my life). My doctors recommended the most aggressive treatment possible, because that’s the only speed they understand, but they went along with my decision. Well, turns out I was in the 12% failure category and not the 88% success category. Someone has to be, and this time it was me. So two years later I was back getting the more aggressive treatment. My endocrinologist said this proved that I was “wrong,” but that just shows that he doesn’t understand statistics or predictions. Anyway, I’m fine now, total remission, down to checks only every two years. Can’t complain about that!

          Liked by 2 people

          • Kurt Brindley 9:32 pm on November 5, 2015 Permalink | Reply

            Hell yeah! Def cannot complain about that… or in the way you roll. Very inspiring. Thank you for sharing that, Joy.

            Liked by 1 person

    • Carol Dunnigan 8:23 pm on November 5, 2015 Permalink | Reply

      Hell yeah! And now I don’t feel so bad about my lung biopsy last year. I heard that people have died from what I had/have, but I’m one of the lucky ones. So glad you’re still here with us!

      Liked by 1 person

    • persoinpoesia2015 8:27 pm on November 5, 2015 Permalink | Reply

      HELL YEAH!! to the infinity

      Liked by 2 people

    • KIA 8:32 pm on November 5, 2015 Permalink | Reply

      Reblogged this on The Recovering Know It All and commented:
      This is an Amazing Story of Living in the Face of Death. Aren’t we all? But this brother is daily Snatching Victory from the Jaws of ‘certain’ Defeat. Life is precious and sweet. Life to the fullest every moment you have. -KIA

      Liked by 2 people

    • k~ 8:40 pm on November 5, 2015 Permalink | Reply

      The inspirational voices that are heard from those people, like you, that look death in the eye and tell it to take a hike (okay sometimes the verbs are a bit stronger) deserve attention. Your attitude, and consistent strength is worth so much to people who hear the results and accept that they will never be the “thirteen percent” that you have claimed as yours. Kudos to you for your ability to love, laugh, and live in the face of choices between faith and giving in.

      I saw that you did not mind another sharing your post on FB, so I have done the same. This is inspirational to me, and I imagine it will be to many more.

      Liked by 2 people

    • Kim Hurst 8:58 pm on November 5, 2015 Permalink | Reply

      Here’s my HELL YEAH! I feel blessed to have read this will be passing it on!

      Liked by 2 people

      • Kurt Brindley 9:41 pm on November 5, 2015 Permalink | Reply

        Hell yeah! indeed. It goes without saying, sister, that your love and prayers are integral to me being here right now. :)

        Like

    • pezoldo 9:08 pm on November 5, 2015 Permalink | Reply

      My mother just got the news that she’ll likely make the 8% 5-year-survival rate for her particular brand of cancer… good to know that there are others out there beating the odds right alongside her! Great to hear the news :)

      Liked by 2 people

    • juniperpine 9:13 pm on November 5, 2015 Permalink | Reply

      Hello, Yeah!!! Thank you for the 13, plus one, steps.

      Liked by 2 people

    • Satin Sheet Diva 9:20 pm on November 5, 2015 Permalink | Reply

      AMEN. And may I say, Im thankful that you are around to post such insight. This was a message I needed to read.

      Liked by 2 people

    • Julie Senita 9:30 pm on November 5, 2015 Permalink | Reply

      So glad to hear your inspiring story Kurt and words of wisdom that we can all live by. Blessings my friend for sharing it with others and giving hope. Take care and be well!

      Liked by 2 people

    • writingblissfully 9:42 pm on November 5, 2015 Permalink | Reply

      Congratulations! And oh hell yeah! :-) Truly inspiring!

      Liked by 2 people

    • seanpatrickwhiteley 9:55 pm on November 5, 2015 Permalink | Reply

      Simply amazing. There is nothing else to say. Good on ya, man!

      Liked by 2 people

    • niaaeryn 9:59 pm on November 5, 2015 Permalink | Reply

      Congratulations! That is excellent news and inspirational advice. :)

      Liked by 2 people

    • tpesce2015 10:49 pm on November 5, 2015 Permalink | Reply

      Hard won wisdom. Generously shared. Thank you, warrior!

      Liked by 1 person

    • Allen 10:54 pm on November 5, 2015 Permalink | Reply

      Awesome piece — this is very inspiring! I’m definitely making a point to express gratitude and to appreciate everything that life has to offer.

      And yes, at the very least, you definitely deserve a “Hell, yeah!” :-)

      Liked by 2 people

      • Kurt Brindley 10:02 am on November 11, 2015 Permalink | Reply

        Hell yeah… thank you very much, Allen. I really appreciate you taking the time leave me such a kind, encouraging comment. :)

        Liked by 1 person

    • Lilka Raphael 11:44 pm on November 5, 2015 Permalink | Reply

      What a testimony! Great post that certainly puts things in their proper perspective.
      Thanks for sharing your story. B Blessed!!!

      Liked by 1 person

    • Karina Pinella 12:10 am on November 6, 2015 Permalink | Reply

      Keep on kicking!

      Liked by 1 person

    • Annie 7:06 am on November 6, 2015 Permalink | Reply

      Hell yeah! Thanks for sharing this, and for the reminder.

      Liked by 1 person

    • hilsart 7:11 am on November 6, 2015 Permalink | Reply

      Thank you so much for that Kurt. And may you have a brilliant day – and week – and month – and years ahead of you.

      Liked by 1 person

    • Mike Fuller Author 8:00 am on November 6, 2015 Permalink | Reply

      14. The Powerball numbers will be…

      Liked by 1 person

    • Suburban Leaves 8:23 am on November 6, 2015 Permalink | Reply

      A great read, thank you Kurt. This was for me a little nudge to reposition my perspective. Take care.

      Liked by 1 person

    • Mike Hartley 10:50 am on November 6, 2015 Permalink | Reply

      Hell Yeah Kurt. Continue loving each day and each person in your life. I’ll look at your list to remind me along the way and try to add to it. Love your positive message but also really like the picture. Here’s to many more days and finding the best in each.

      Liked by 1 person

    • Robyn 12:06 pm on November 6, 2015 Permalink | Reply

      Kurt, it’s all about you, you, you, isn’t it.
      But, dude, seriously…you rock. x

      Liked by 2 people

    • Aimer Boyz 12:34 pm on November 6, 2015 Permalink | Reply

      Smart advice on how to live life whether we’re ill or not. Stay healthy :)

      Liked by 1 person

    • wscottling 1:04 pm on November 6, 2015 Permalink | Reply

      I’ll give you a hell yeah. and a step 14. Gather the Dragon Balls. ^_^

      Liked by 1 person

      • Kurt Brindley 9:55 am on November 11, 2015 Permalink | Reply

        Haha… Thank you, my friend. I better ask my sons how to best gather those suckers. :)

        Like

    • Leland Olson Hoel 1:11 pm on November 6, 2015 Permalink | Reply

      “Hell yeah!” and “Hell yeah”
      Amen and Amen also! God is GOOD all the time.

      I like the picture of the invincible Kurt in the baseball cap better. You put a lot of thought into your How Not T o Die In 13 Easy Steps. It should be a must read for everyone. I have been a spinal cord injury survivor for 54 years because I don’t play by the doctors rule book. I have pretty much done what I felt like doing, and control pain without drugs so far. If a person is busy they forget about the pain, and stay half way in shape, that sounds kind of flip but has worked well for me.

      Stephanie Butland said, “Bah To Cancer.” I like your reply better, more meaningful and straightforward.

      Best wishes, My hope is, we will both be blogging till the cows come home.

      PS
      The National Institutes of Health (NIH) told me in 1985, I have a rare spinal cord disorder, Syringomyelia, caused by my spinal fracture in 1964. Still keep on keepin on tho???????????????

      Liked by 2 people

    • k rawson 1:42 pm on November 6, 2015 Permalink | Reply

      Truly marvelous post, Kurt. Thanks for putting this out there.

      Liked by 1 person

    • amariesilver 2:14 pm on November 6, 2015 Permalink | Reply

      Beautifully said! So glad you’re still with us!

      Liked by 1 person

    • maggie0019 2:44 pm on November 6, 2015 Permalink | Reply

      wonderful. simply, wonderful. Woof!

      Liked by 1 person

    • Clara Erving 3:22 pm on November 6, 2015 Permalink | Reply

      hell yeah! Congratulations and here’s to five plus more years of life and love with your wife and family!!

      Liked by 1 person

    • avwalters 4:09 pm on November 6, 2015 Permalink | Reply

      Good rules for living….regardless of the circumstances. Hang in there.

      Liked by 1 person

    • raphaela99 4:12 pm on November 6, 2015 Permalink | Reply

      Great news! I adore your list too!

      Liked by 1 person

    • Alli Farkas 11:03 pm on November 6, 2015 Permalink | Reply

      My personal philosophy on dying, courtesy of Alan Alda: I know I’m going to die, but not in my lifetime.

      Liked by 1 person

    • Elusive Trope 1:22 am on November 7, 2015 Permalink | Reply

      Hell yeah!

      Liked by 1 person

    • Lori 8:21 am on November 7, 2015 Permalink | Reply

      You’re an inspiration and I’m so happy to have you as a friend! Keep that finger high!

      Liked by 1 person

      • Kurt Brindley 9:45 am on November 11, 2015 Permalink | Reply

        Haha… Yes, the finger will remain high and pointed. My circle of real friends outside the virtual world of the internet is small… so glad you are within it. :)

        Like

    • EKS 11:40 am on November 7, 2015 Permalink | Reply

      I am glad you are still here to tell your story… and… well we are too old to die young.

      Liked by 1 person

    • The Vintage Vixen 4:50 pm on November 7, 2015 Permalink | Reply

      Hell YEAH!!! Keep kicking death’s ass!!! Prayers and blessings to you, Sir!!!

      Liked by 1 person

    • jacquelineobyikocha 10:53 pm on November 7, 2015 Permalink | Reply

      Quite informative. Thank you.

      Liked by 1 person

    • Tony Martin 2:24 pm on November 8, 2015 Permalink | Reply

      Hi Kurt How we doing? I love your posts man i really do. I have nominated you for a LIebster Award, i know you may not qualify cause your like way up there lol, but hey change of the times. I hope you will accept dude.
      Be Amazing XxX

      Liked by 1 person

    • marina kanavaki 6:19 pm on November 8, 2015 Permalink | Reply

      Ah, Kurt, not a ‘Thirteen Percenter’, you are YOU and there’s only one thing I can think of you should keep on doing and that is: being YOU! Thank you for sharing, my friend.

      Liked by 1 person

      • Kurt Brindley 9:34 am on November 11, 2015 Permalink | Reply

        Haha… thank you, marina. For good or bad, I suppose I shall continue on doing just that to the best of my ability… :)

        Like

    • CJ 6:06 pm on November 9, 2015 Permalink | Reply

      Reblogged this on What's wrong with me? and commented:
      Along the lines of my post yesterday, here is a list worth reading!

      Liked by 1 person

    • MjBee 2:58 am on November 10, 2015 Permalink | Reply

      Reblogged this on MyShadowWeighsATonne.

      Liked by 1 person

    • dreamingever 7:54 pm on November 10, 2015 Permalink | Reply

      Reblogged this on everthedreamerblog and commented:
      Here is a truly inspirational article from a man who has looked Death in the face. God bless you, Kurt. Wishing you the best!

      Liked by 1 person

    • bryanknower 8:05 am on November 11, 2015 Permalink | Reply

      Thank you for following my blog. I found this post inspiring. Very best wishes to you.

      Liked by 1 person

    • nickiek16 9:26 pm on November 12, 2015 Permalink | Reply

      I just want to say Thank You for giving me a ray of hope. I was diagnosed with BOS 2 years ago after a bone marrow transplant and was told the same odds of 5 year survival rate. I also have gvhd of the skin, eyes, and mucous membranes and have had a couple near death experiences due to the BOS. I was just recently turned down for a lung transplant because they said that I was not well enough to receive it as of now. I struggle everyday to do the simplest of things. Just as you were saying, it is a struggle to even put on a pair of socks. After reading this I truly feel that there may still be a chance that I can be a 13%er too!! I was wondering if you would be willing to share with me some of the treatments that you tried? I am currently on predinsone, many antibiotics, an inhaler and getting ready to get back on cellcept. Again, thank you for your inspiring words!

      Liked by 2 people

      • Kurt Brindley 6:25 pm on November 13, 2015 Permalink | Reply

        Hello, nickiek16. So sorry to hear about your condition. I was on prednisone for the first year but knew right from the start that I had to get off it as soon as I could. I began taking montelukast (singulair) along with azythromicin and Bactrim for the lungs and about six months after starting that regiment I was able to be weaned off the prednisone. I did go through ECP treatments two times a week for nearly two years but I stopped doing that almost two years ago now. I continue to take the S, A, & B along with gleevac (to prevent the leukemia from returning) and Valtrex (for shingles prevention). I written a lot about my health if you’re interested in searching this site but if you want any further info, please feel free to email me through the contact page. Best of luck to you, friend. Stay positive and try to exercise the best you can and as often as you can. ~ Kurt

        Like

    • egbertstarr 11:26 am on November 15, 2015 Permalink | Reply

      Your words here are so important for those who have not had to endure or suffer grave illnesses themselves, bestowing upon us wisdom that can only awaken the soul and mind. Thank you. It’s a good wake up, like being splashed with fresh water.

      Liked by 2 people

    • f2fwiththesky 5:39 pm on November 15, 2015 Permalink | Reply

      This has to be my favorite blog article I have found on WordPress so far!!!! Thank you for sharing your hard-won wisdom. It means a lot to read it. Facing death, and reflecting on life not with romanticism, but with honesty and hope…that takes courage. Honesty is so important; it is easy to romanticize life and healing. “Embracing Modernity” is a form of being honest about healing–some “hippie stuff” works, and it’s on point much of the time, but there have been times in my life when my world has been crashing down and I just needed some modern medicine already. Balance. Thank you!

      Liked by 4 people

      • Kurt Brindley 12:32 pm on November 19, 2015 Permalink | Reply

        Thank you very much for taking the time to leave me such a kind, encouraging comment, f2fwiththesky. It’s truly appreciated.

        Liked by 1 person

    • egbertstarr 1:04 pm on November 19, 2015 Permalink | Reply

      Part of the point of it all is to share our experiences and suffering with others so that they may avoid unnecessary pain and suffering—if possible— themselves. That, to me, is the essence of what sharing is. So, thank you for your generosity.

      Liked by 1 person

    • Pamela Spiro Wagner 7:33 pm on November 24, 2015 Permalink | Reply

      Hi Kurt,

      I just wanted to tell you that having just gotten out of the state hospital yesterday i found that you had followed my blog a month ago, while i was hospitalized. This incredible post of yours is the first of anyone’s i have read since my discharge and it was a needed shot in the arm ( though given the state hospital’s propensity to force medications and use mechanical restraints and locked door seclusion, that may not be the best metaphor under the circumstances). Thank you for your wisdom and having the kindness to follow Wagblog, which must seem seared with bitterness and rage by comparison.

      If i can figure out how to reblog this, i will do so immediately on Wagblog, as my first effort at positive thinking. I cannot thank you enough.

      MTFFGBWYA – or May The Forces For Good Be With You Always. (My subsitute for God Bless you.)

      Pamela Spiro Wagner

      Liked by 2 people

      • Kurt Brindley 2:20 pm on November 29, 2015 Permalink | Reply

        Hi Pamela. Thanks so much for sharing this and for emphasizing more clearly how relative life is. Your strength and determination is evident and exemplary. I too have many bitter-written posts littered throughout this blog; though now I am able to regard them less as bitter and more as therapeutic. I really appreciate your kind, encouraging comments. Thank you – Stay well and stay strong.

        Liked by 2 people

    • Pamela Spiro Wagner 7:36 pm on November 24, 2015 Permalink | Reply

      Reblogged this on WAGblog: Dum Spiro Spero and commented:
      This is an incredibly uplifting and inspiring post by Kurt Brindley.

      Liked by 2 people

    • nugget59 2:50 pm on December 3, 2015 Permalink | Reply

      I like your style! Thank you so much for taking the time to look at my blog. Given that you have “kicked Death’s ass” more than once, I expect your time is precious. I appreciate it very much that you spent some of it on me. :o)

      Liked by 1 person

    • grannyspider 7:50 pm on December 24, 2015 Permalink | Reply

      Reblogged this on Grandmother Spider and commented:
      Kurt knows how to live. Thank you for your sharing your wisdom.

      Liked by 1 person

    • Forever Alaskan 1:01 pm on December 26, 2015 Permalink | Reply

      This is an amazing piece which I am going to ‘reblog’ on my site as it is too important and well written not to share! Although I have yet to truly face death I recently was reminded of my own mortality thanks to a fall that seriously fractured my left radius and ulna. Ultimately I required orthopedic surgery and now have a plate and six bone screws as reminders that I’m no longer ’18 and invincible’! The wisdom in this piece is deep and well crafted; a wonderful blend of experience, philosophy and perspective. I so much concur with much of what was expressed and I keep a three CD set of Dr. Wayne Dyer’s “There’s A Spiritual Solution To Every Problem” in my car for long drives. It certainly ‘feels’ as though you have discovered a simple yet immeasurably powerful secret which I only truly came to embrace a few years back: ‘Attitude is Everything!’. I’d often read about this but until I really came to live it I found it to just be some interesting words. Now it forms the foundation of my existence. Thanks so much for creating this masterpiece!!

      Liked by 1 person

      • Kurt Brindley 2:22 pm on December 26, 2015 Permalink | Reply

        This makes me very happy, Forever Alaskan. I truly appreciate you taking the time to read, comment, and share the piece. I’m humbled by your kind, encouraging words.

        Like

    • Forever Alaskan 1:03 pm on December 26, 2015 Permalink | Reply

      Reblogged this on Rualli and commented:
      This is a truly memorable piece which contains deep wisdom and amazing perspective. I humbly reblog it because it is so very meaningful and offers a well crafted synopsis of a plan to enhance one’s life that is relatively simple and easy to understand.

      Liked by 1 person

    • Cathy 5:19 pm on December 27, 2015 Permalink | Reply

      Firstly I’d like to add to the collection oh Hell Yeah’s and then to say thank you for the list – wise words and good advice that I will try to add to my own list for moving forward in life. Happy and healthy 2016 to you.

      Liked by 2 people

      • Kurt Brindley 10:05 am on December 28, 2015 Permalink | Reply

        Awesome. Thanks so much for your “Hell Yeah,” Cathy. It really means a lot to me, as do your kind, encouraging feedback and well wishes. I hope for you the best year ever in 2016.

        Liked by 1 person

        • Forever Alaskan 11:09 am on December 28, 2015 Permalink | Reply

          Your piece is really lighting up my site, Kurt! I’ve shared its existence with a number of folks who do not follow blogs and to a person they were blown away by your perspective, your experience and your wisdom. Just a truly wonderful piece that I suspect will continue to positively impact people’s lives for a long time coming. Thanks again for creating such an inspirational and useful piece!

          Liked by 1 person

          • Kurt Brindley 11:36 am on December 28, 2015 Permalink | Reply

            Hey, thanks for letting me know, FA; and thanks for sharing it – it makes me happy to know you’ve furthered its reach. :)

            Like

    • Grandtrines 4:21 am on December 30, 2015 Permalink | Reply

      Reblogged this on Lost Dudeist Astrology and commented:
      Wow! That was REALLY good!

      Liked by 1 person

    • Tracy Bezesky 12:38 pm on January 3, 2016 Permalink | Reply

      Congratulations for remaining here with longer than anyone thought you could, and for making that gift worthwhile! Keep it up!

      Liked by 1 person

    • faithbradytravel 11:51 am on January 5, 2016 Permalink | Reply

      Hell yeah! Your beautiful words of wisdom are my inspiration today. Life is truly a gift every day but it’s incredibly easy to let people or other factors get you down – but not today. Thank you :)

      Liked by 1 person

      • Kurt Brindley 11:55 am on January 5, 2016 Permalink | Reply

        And your kind, encouraging words have inspired me deeply, faithbradytravel. Thanks so much for taking the time to share them with me.

        Liked by 1 person

    • Arlene Powers 5:26 pm on January 10, 2016 Permalink | Reply

      Hell yeah! I am totally with you. After a stage 4 colon cancer diagnosis last September, I am taking on the WAR with cancer, and I am going to kick butt! Glad there are others out there who picked cancer’s butt!!!! Love the book, will be following your journey too!

      Liked by 1 person

      • Kurt Brindley 6:43 pm on January 10, 2016 Permalink | Reply

        Hell yeah! right back at ya, Arlene. Thanks so much for sharing your kind, inspiring comment and keep us posted as you continue kicking cancer’s butt. Awesomeness. :)

        Liked by 1 person

        • Arlene Powers 6:55 pm on January 10, 2016 Permalink | Reply

          Oops, kicked cancer’s butt. Just another day in my Lucy Riccardo life! So I am starting a new art project today, have been doing smaller projects that I can finish in a few days…first the pastel bird drawings, then the dreamcatchers, now I am starting to draw small drawings for Christmas cards next year, so everyone on my list will get an original instead of a print. Stay tuned, will post on blog.

          Like

    • ellen3625 11:14 am on January 26, 2016 Permalink | Reply

      I’ll give you a “Hell Yeah”. My husband also had a sever form of cancer that was not supposed to go away and it has been 6 years without cancer. We attribute the animals and plants for healing him and have spent those years using our gifts and talent to help homeless dogs. Thanks for following The Journey of Phillip, the Forgotten, to Phillip the Fabulous, on wackedoutonweeds.com. Be Well, Ellen

      Liked by 2 people

    • shivasiddula 7:27 am on February 26, 2017 Permalink | Reply

      Great insight and wonderful expressions Kurt Brindley. A good reference for people to follow when sick or depressed. A doctor is just a trained person and a knowledgeable doctor knows his/her limitations. Nature is great. As you said we are all connected in this Universe. Positive vibes always result in better life and happiness. When we do not know facts behind some occurrence it is miracle. Unraveled mystery is science. I experienced the benefit of prayers. When my ability to help my clients is limited I always ask them to pray. Some feel it funny. But that is my last resort for a better life.

      Liked by 1 person

      • Kurt Brindley 12:55 pm on March 7, 2017 Permalink | Reply

        Thank you for your kind words, shivasiddula. Prayer and meditation, for me, are both a first and a last resort when it comes to healing…and most other things, too. :)

        Liked by 1 person

        • shivasiddula 10:58 am on March 9, 2017 Permalink | Reply

          I am a medical professional. First I do my best then pray for Almighty’s help. I do meditate regularly that calms and keeps me peaceful.

          Like

  • Kurt Brindley 12:59 pm on March 24, 2015 Permalink | Reply
    Tags: , , , leukemia, , , ,   

    The Capital of Care 

    image

    Reporting live from the National Institutes of Health

     
  • Kurt Brindley 12:17 pm on October 12, 2014 Permalink | Reply
    Tags: breast cancer, , , , , , leukemia, men's issues, , , , ,   

    Cancer isn’t pink…and neither is football 

    Cancer isn't pink

     
    • burlwhitman 12:49 pm on October 12, 2014 Permalink | Reply

      Love it.

      Liked by 1 person

    • peeversandpenguins 2:12 pm on October 12, 2014 Permalink | Reply

      Hang in there!

      Liked by 1 person

    • wifemothersurvivor 6:36 pm on October 12, 2014 Permalink | Reply

      Nope. The actual color for universal cancer is purple :) As a survivor, I am sick unto death of the pinkwashing that is October! Nobody even knows/wants to know that October is also liver cancer awareness month, huh?
      Good luck, and hang in there. Healing vibes your way.

      Liked by 2 people

      • Kurt Brindley ✍ ✄ ✍ 10:13 pm on October 12, 2014 Permalink | Reply

        Seriously…my pink protest has only just begun.

        And thank you for the healing vibes. Definitely hanging in there. Doing quite well actually.

        The picture in the post was from earlier in the year when my heart took a hit from the cancer drug I take as a prophylactic.

        Thanks for stopping by, wifemothersurvivor.

        Be well.
        #iamthatiam

        Liked by 1 person

    • john flanagan 8:19 pm on October 12, 2014 Permalink | Reply

      Strength and healing to you

      Liked by 1 person

    • J 12:21 am on October 13, 2014 Permalink | Reply

      Stay tough, Kurt.
      I too am sick of the general pinkitude of October.

      Liked by 1 person

      • Kurt Brindley ✍ ✄ ✍ 9:56 am on October 13, 2014 Permalink | Reply

        Seriously. For some reason, probably all the slick overbearing marketing and all drowning everything in pink, this breast cancer campaign reminds me of Catch-22’s Milo Mindbender. Why have enough when you can have more than enough…

        Liked by 1 person

    • InfiniteZip 5:38 am on October 13, 2014 Permalink | Reply

      Cancer sucks…sending healing thoughts that have no pink in them :) chemo sucks too but bald is beautiful :)

      Liked by 1 person

    • sherinsk 1:11 am on October 14, 2014 Permalink | Reply

      I don’t know what to say kurt.I am from south india and if you ask me can god heal everyone the answer is yes but is he doing that-No.why?I really don’t know.i will pray.
      Now i can really see why you liked my old age home haiku.Thanks and god bless :)

      Like

      • Kurt Brindley ✍ ✄ ✍ 11:55 am on October 15, 2014 Permalink | Reply

        Hi, sherinsk. I appreciate you stopping by and leaving me such a nice comment. Thank you for your prayers and for your old age haiku. Great stuff. Peace.

        Like

    • Nikolas Larum 5:50 pm on October 19, 2014 Permalink | Reply

      Finally had time to check your blog out today. Thank you for following mine. I dig your attitude (thankfulness combined with defiance – a winning combination if there ever was one!). Just had my one-year check up from head-and-neck cancer treatment (chemo and radiation). All clear and all is well. But as you know, the battle is just that, a battle. Loved what you said about your kids in your About section. I feel the same about mine. What a wonder life is that from us can come such beings that are far superior in every way (must be the wives).

      I’ve been searching for a better term than “cancer survivor”. Victor seems a bit presumptuous, but “survivor” paints it as a closer call than I care to believe it actually was. Any thoughts?

      Like

  • Kurt Brindley 3:23 pm on June 2, 2013 Permalink | Reply
    Tags: boston lenses, , , ecp, extracorporeal photopheresis, , , , , , Johns Hopkins Dermatology Center, Johns Hopkins Wilmer Eye Institute, leukemia, , , , , , prose lenses, scleral lenses, ,   

    If You’re Here You Must Be Sick… 

    (OR CARE FOR SOMEONE WHO IS)

    I’d like to think that one or two of my three regular visitors (one of whom is me) come to this site to gain a deeper understanding of my creative writing by exploring my short stories, and poetry, and my insightful and sometimes witty flash fiction, and, most importantly, to buy my books.

    Yeah, that’s what I’d like to think.

    However, the reality is far from it.

    The unfortunate truth is that, by far, most people who visit this site do so because they are seeking out information about my diseases, past and present.

    The most common search terms that lead these seekers, or anyone for that matter, to my site are:

    gvhd lungs
    bone marrow biopsy
    hickman line
    graft versus host disease lungs
    bone marrow needle
    (the article these terms lead to provide for some interesting pictures (viewer discretion advised))
    prednisone and caffeine
    prednisone and coffee

    The most popular article on this site, which has nearly triple the amount of views of the second most popular article, is Lung GVHD By Any Other Name, where I discuss my frustration about finding out I have the incurable disease.

    I say the truth is unfortunate not because I’m upset that people are not here to read my creative writings (although I confess my ego is a bit miffed), I say it is unfortunate because I know that if someone is here to learn about my experiences with leukemia and graft versus host disease, then he or she probably is in for some challenging times.

    And that is unfortunate.

    About a month after I was informed I had leukemia, I started blogging about it at a site I called Marrowish. And I blogged there regularly for two years. For two years I was consumed with wanting to know as much about my diseases (first leukemia and then GVHD…of the lungs…and eyes…and liver) as I could find, and I wanted to share this knowledge with as many people as possible.

    But eventually I got sick of being sick…and of having my thoughts and actions being consumed by it.

    So I stopped thinking about it (the best I could) and writing about it.

    That was over a year-and-a-half ago…

    But, seeing how “popular” all my sick-related articles are, perhaps it’s time I began providing updates on my health again from time to time.

    I’m still certainly sick of being sick, but the good news is I haven’t really gotten much sicker since my last update (which was more like a major whine-fest than a health update).

    In fact, I’ve been pretty stable and have even improved in some regards. This stability and improvement may be because I have been doing some pretty cool health-related things lately (I say “may” because during the past four years of my involvement with the medical community, one thing I’ve learned is that there are not many certitudes when it comes to healthcare).

    I’ll try to expand on these in later articles, but here is what I have been up to health-wise the past year-and-a-half:

    • April 2011, I began a five-year Bronchiolitis Obliterans Syndrome (BOS) study at the National Institute of Health. This study’s goal is to get FDA approval to use Montelukast (commercially known as Singulair and typically prescribed for asthma) as an authorized treatment for BOS. Since I began taking the drug I have been able to stop taking the steroid called prednisone—which is a major victory—and my lung condition has remained stable, as proven by regular pulmonary function testing.
    • January 2012, I began twice weekly Extracorporeal Photopheresis (ECP) treatments at Johns Hopkins Dermatology Center. While there is no conclusive evidence as of yet, it is thought that this blood treatment may be effective in bringing calm to all those crazy outta control T-cells (affectionately called GVHD) that we post-transplant patients tend to get. I cannot say for sure that these treatments have helped; but I can most definitely say that they haven’t hurt — except for the fact that they take a big painful bite of time out of my life. Each treatment is about three-hours long; add to that the drive time coming and going plus the system prep time and it comes close to being a five-hour-per-treatment bite of time. Ouch. But, if you’re looking for options to treat your GVHD, you surely want to consider ECP as one of them.
    • May 2012, I was fitted for Prose lenses at Johns Hopkins Wilmer Eye Institute. These scleral-type lenses used to be referred to as Boston Lenses, since Boston is where they were invented and was the only place where one could get them. Fortunately, Johns Hopkins now also provides the service. These vision-saving lenses have drastically changed and improved my quality of life.
    • August 2012, I had cataract surgery in both eyes. Yeah, prednisone may have saved my life, but it definitely took a toll on my body. However, after I had the surgery and once my Prose lenses were readjusted for my new vision, my eyes are now bionic.

    Those are the major things that I’ve been involved with that I feel could benefit others who are dealing with similar challenges as me. Of course, there are other things I have done and continue to do (like my countertop calisthenics, for instance) that may be of use, too, and of which I will write about at a later date.

    Who knows, maybe someday I might even coral all this health stuff into an easy-to-read ebook, or something…

    We’ll see.

    Until then please remember that whatever it is you’re seeking, or regardless your reason for visiting, I hope you find at least a little bit of solace from the words that have accumulated here over the years.

    Thanks for stopping by.

    ~~~~

    PS… Please take the time to read my Disclaimer for this site.

     
    • Michelle Argue 9:47 am on June 3, 2013 Permalink | Reply

      Yes, we are sick. Really enjoyed reading your blog. love your sense of humor and thank you for sharing your experiences with leukemia,GVHD and the treatments. your writing brought a smile to my face, something I’ve needed

      Like

    • Vicki 11:00 pm on October 5, 2014 Permalink | Reply

      I got sick and tired (of being sick and tired and in constant pain) some 4 1/2 years ago.

      Now I’m a PHOTOGRAPHER (as you will know having just started following one of my PhotoBlogs – Living and Nature). Thank you for following my photography journey and as much as I’d like to reciprocate, I’ve just UNfollowed nearly every one whose blog I love, purely and simply because reading just tires me out these days and I was spending too much time on the computer and not enough time outdoors doing the very thing I love best – Photography and communing with Nature.

      I don’t have Cancer fortunately, but severe Hypertrophic Cardiomyopathy and Fibromyalgia (at the beginning of the long list of Health Issues), are just as mind-numbingly ‘boring’ to the uninitiated.

      Delighted to see your wonderful writing in the published form. Hope it continues for many, many years into the future.

      You have such a wonderful sense of humour. Don’t every let it diminish into the background of Chronic Illness. It can be a lifesaver in this uncertain world of severe and often debilitating illness.

      Liked by 1 person

    • Kurt Brindley ✍ ✄ ✍ 1:17 pm on October 6, 2014 Permalink | Reply

      Sorry to hear about all the pain issues, Vicki; but how you are managing them is inspiring. Actually, things have progressed unexpectedly well for me since I wrote this. Probably should do an update just for the record. Thanks for stopping by, the nice comments, and the completely understandable non-follow.

      Like

    • Sandra 4:05 am on December 27, 2014 Permalink | Reply

      I always mean what I say. I didn’t come here for your sickness of any sort. I know a poet-short-story man in PA and so I clicked to see if I could tell you two apart. Good thing is all writers don’t read the same or look the same in text—much like real people, I can tell you apart.

      Since the L word has inserted itself into your life and also into your blog conversations, I’ll share that my grandfather was diagnosed when I was too small to know anything except, “that doesn’t look like Grampa.” That was in the mid 70s; he’s nearing 90. Some 38 yearsish have seen him in full remission. Every body is different and leukemia is different from case to case.

      To each of you who stop in because you’re hurting or you’re hurting for someone else who is hurting more, I have nothing to say but only compassion to offer. Trite isn’t something to which I aspire.

      Liked by 1 person

      • Kurt Brindley 10:50 am on December 27, 2014 Permalink | Reply

        Grandpa is quite the inspiration. I appreciate you stopping by and taking the time to comment, Sandra.

        Like

  • Kurt Brindley 4:19 am on September 4, 2011 Permalink | Reply
    Tags: artificial tears, , , , , , leukemia, , , , , nerve damage, , , , restasis, smell, , taste, tears,   

    No Sense, Whatsoever 

    Yeah, it’s another one of those piss and vinegar kind of days…

    I mean, Come! On!

    Without even mentioning my slowly deteriorating and dying lungs, it’s bad enough that I have lost most of the feeling in my lower extremities due to the neuropathy that was brought on by all the chemo I got juiced up with to treat my leukemia, or that I lost most of my ability to smell or to taste to only our tight-lipped God knows why (my doctors sure as hell don’t know), but, because of the reemergence of GVHD due to my decrease in prednisone dosage, do I really need to now start losing my ability to see, as well?

    Jesus Holy Christ!

    And Mohammad, too!

    (I’ll leave it up to you to determine whether those pleas are requests for spiritual intervention and/or guidance or just blasphemously rude exasperated expletives.)

    And it’s even worse than bad enough that not only am I slowly losing my vision to a deeper and deeper foggy blur, but is it really necessary to have to lose it in such a painfully annoying way?

    I mean, come on! That’s just a bit beyond the boundaries of good taste, as one of my favorite former clients used to often say whenever things got really fucked up on the job. (I’m sorry if me saying “fucked up” offends you, but I only say “fucked up” simply to keep this little aside paragraph in the spirit of things that one of my favorite former clients used to often say.)

    But I mean, Holy frikkin’ Buddha, come on! Can someone just please give me a goddamn break?

    When I wake in the morning, my eyes, especially my right eye, feel as if they have a big chunk of jagged glass in them. Seriously. I’m not exaggerating. Well…maybe a little. But still, it takes several hours until the pain associated with the stuck in the eye feeling diminishes enough to where it only feels like there is a modest chunk of rock in them instead of a big chunk of jagged glass. But regardless of how it’s described, it always feels like there is something stuck in them and it drives me absolutely frikkin’ crazy.

    And then, I guess my eyes figured since they aren’t needed to see so much anymore, they decided to stop producing tears. My eyes are now constantly dry as a brittle bone. As a result, they burn so badly it feels as if they are being, not bathed in their natural tears, but rubbed down and cured with salt each time I blink.

    And then, the slightest amount of light or breeze feels as if someone is thinly slicing into them with razor blades.

    Pure torture.

    Pisses me off and depresses me so because, all my life the sun was always my most bestest buddy, but now it is my worstest enemy. Not only can I not stand to even catch the slightest glimpse of the sun anymore because it is just too painful, but ever since my bone marrow transplant I can no longer risk getting sunburned because, at a minimum it could screw up my graft, and at a maximum it could kill me.

    Sorry sun. I used to love you, but now I must hate you.

    Let’s see….what else do I have on my docket of “poor me” gripes and whines for today?

    Oh yeah, the medicine.

    The docs have me on four different types of meds to treat my eye gvhd:

    1. Artificial tear drops.
    2. Drops that are supposed to help my eyes produce tears.
    3. Steroid drops that are supposed to help suppress and slow down the damage done by the gvhd.
    4. And an ointment that I squeeze into the eyes at night to help keep them moist while I sleep.

    I could not survive without the artificial tears. I am constantly dropping them into my eyes. It’s a pain in the ass to have to do it, what seems like, every five minutes or so, but it’s a vital pain in the ass. And the ointment feels pretty good. But if the drops to help me produce tears and the steroids drops are working, I sure as hell can’t tell. The only thing I am sure that they do do is make my eyes burn and my vision blur even more than normal.

    Here are a couple of examples of exactly how much my eyes burn: 1) My nose is always runny because of the burn. I couldn’t figure it out at first. I thought maybe I was coming down with another infection. Very annoying. 2) The burn from the dryness must really warm up the surface of my eyes because after I drop the artificial tears into them and then put my glasses back on, the lenses fog up a little around the eyes. Seriously.

    I dread it when it comes time to have to put the pain producing medicine drops in my eyes. It takes a good hour afterwards before my eyes return to “normal.” Unfortunately, the supposed tear producing drops go in twice a day and the steroid drops go in three time a day; so, for about five hours out of each of my day, I get to self-inflict even more pain on my painful eyes.

    Fun.

    And you know what scares me the most from all this? It’s that I am having a harder and harder time doing what I love to do so much, and that is this, what I am doing right now.

    Writing.

    Working on the computer.

    As I wrote this pathetically whiny draft on a Word document in a completely darkened room, I literally could not see anything much more on the screen than a glowing blurry mass of white characters. The characters are white because even the light, especially the light, from the computer is torture, so I have to invert the colors of my documents so that the page is black and the characters I type are white.

    You should see how ridiculous I look right now as I prepare this…all squinty-eyed and mouth opened, glasses pushed up on top of my thin and disheveled-haired head, face pressed up as close as possible against the screen in a near-failing effort to read the crap that I’m typing.

    Expect to see, which I am sure you do, see things with your eyes that is, and expect to see with them even more annoying typos in my junk than normal.

    Yeah, it’s all getting really hard.

    And stressful.

    To be honest, I don’t know how much longer I can do it.

    Write, that is.

    It is just hurting too much.

    And I suppose, as I continue to reduce prednisone dosage, it’s only going to get worse.

    And if I can no longer write…

    especially after all my life wanting to have the time and ability to be able to write full-time like I have been able to do since all the cancer fun started…

    I don’t know what I will do.

    But I do know I will be very sad until I figure it out.

    But as of now, I do not have it figured out.

    Because all my lack of senses…

    makes no sense to me, whatsoever.

    I mean, come on.

     
  • Kurt Brindley 12:44 pm on August 23, 2011 Permalink | Reply
    Tags: , , crisis, exploitation, , , , , leukemia, , , , , positive attitude, , rahm emanuel,   

    Exploiting the Crisis 

    Rahm Emaneul, President Obama’s first Chief of Staff, was famously quoted as saying, “Never let a serious crisis go to waste” in response to the financial meltdown of 2008.

    I imagine most would regard that quote disdainfully—a little too Machiavellian for their pleasant palates, perhaps.

    But you know what? It is that exact mentality towards life in general that I have tried to apply to my life over the years, and I have been trying even harder ever since I was diagnosed with cancer and lung disease.

    Because let’s face it, regardless whether your palate prefers pleasantries or not, the saying that we all know, every single one of us, that expresses so well about the horrible inevitables that life sometimes trips us up with is not “Flowers Happen!” or “Perfume Happens!” No, the saying we all know and have probably even declared from time to time in our sometimes horribly inevitable lives is:

    “SHIT Happens!”

    And do you want to know why we say it?

    That is a rhetorical question because I know you all ready know.

    We all know the answer because no matter how hard we try, no matter how much we study to get good grades, no matter how many hours we put in at work to make the money that we use to build our little nests for which to lay in our little eggs, no matter how well we plan and believe we are prepared for all the horrible inevitables we find in our paths, sometimes life can really stink.

    And sometimes it can really, really stink. Sometimes life can be so smelly our noses cannot even become desensitized to it. Sometimes the smell is so bad it seems like it has become our permanent atmosphere. And in order to survive, we have to breathe it in no matter what, knowing that each breath we take is poison and will make us gag, or even kill us.

    Now that is one stinky life, in my blurry view.

    Fortunately for me, one of the side effects from all of the shit that has been happening in my life lately is that I lost both my sense of smell and taste.

    Pretty handy when life smells so badly that you can almost taste it.

    Shit happens. Yes it does.

    Another less offensive way to those whose sensitivities are easily offended, and less poetic, too, of saying the same thing would be to say that life is nothing more than moving from one crisis to the next.

    I guess how we manage life, then, is dependent upon how we define and deal with crises.

    I am not sure how you define and deal with yours, but I define my crises as “inevitable opportunities” and, like I all ready more than alluded to with the title of this article, I deal with them by exploiting the hell out of them.

    For instance, this blog is nothing but a pure and simple exploitation of the biggest crises that I have ever faced in my life.

    I have been exploiting the hell out of my cancer and lung disease as much as I can. Hell, I tell you exactly as much in my cheeky, self-infatuated, hand-written blurb about me under my obviously intentionally depressing looking picture of me, used only to get you to feel sorrow for me so that you will be more compelled to read my exploitative writings.

    But, there’s more to the exploitation than that.

    I may sarcastically say I am exploiting my disabilities by trying to get you to feel sorry for me, but what I am really doing by all that nonsense is attempting to cope with my insecure feeling of trying step out in my new life as a writer and an author. It’s all pretty scary for me.

    What I really mean when I say I am exploiting my disabilities is that I am trying as best I can to take advantage of the opportunities my crises have provided.

    And the opportunities are many.

    Do you think I really would have been able to pursue my life-long love of writing as aggressively as I am doing now had I not become stricken with cancer and then a chronic, debilitating lung disease?

    I think not, so I am exploiting the hell out of my disabilities to blog and to facebook and to tweet and to finally publish the novel and poetry collection that I had never been able to finish before because life had always gotten in the way.

    Do you think I really would have had the time to share each day and grow in partnership and friendship and love with my wife and children had I not become stricken with my diseases?

    I think not, so I am exploiting the hell out of my disabilities by waking each day looking for new ways to love more and to be more loving and to continually grow as an individual.

    I could give many other examples of how exploitative I am and how I am not letting my crises go to waste, but these will do for now.

    And sure, sometimes the smell of the crises in my life are so overwhelming to me that I become numb and despondent from the smell, but those days, too, are nothing more than smaller crises that must be dealt with in the same manner as all the others: by realizing that no matter how hard I try to be positive and productive, sometimes it—my life—will just hurt too much and I am going to become deeply depressed and I am going to feel so sorry myself for being so unlucky and I am going to feel so resentful towards you for being so lucky and I am going to sit in my cocoon-like chair and let myself sink into a almost inescapable (so far) black hole of depression.

    It happens. I get depressed. And I realize it will continue to happen to me from time to time until a cure is found for my lung disease.

    But I accept that it will happen.

    And when it does, I will deal with it by exploiting the hell out of it.

    ~~~~

    Oh, by the way.

    Now that I got you feeling sorry for me…

    How about reading [download id=”7″] and letting me know what you think of it? ;)

     
  • Kurt Brindley 8:29 pm on July 26, 2011 Permalink | Reply
    Tags: , , , , , doctors, , high school, jhuh, , , leukemia, , questions, stupid questions   

    Ask the Question, I Dare You 

    When meeting with someone with whom you are consulting and seeking advice from and relying on for critical information, someone like your doctor, it is my belief that you should not leave that meeting without asking him or her at least one question.

    Funny thing about those paradoxical little buggers, though…questions, that is, not doctors…is that it seems that the more we know about something, the easier it is to formulate and ask questions about that something; yet, the less we know about it, the harder it is for us to come up with questions to ask about it.

    Well, that’s usually how it is for me, anyway.

    And I don’t know about you, but for me, even sometimes at my old and calloused age, and no matter how times that rusty, dull saw “There’s no such thing as a stupid question.” is drawn back and forth across my grainy, knot-holed brain, if I feel stupid about asking a question before asking it, then it is really hard for me to get up the gumption to get the stupid question out.

    I don’t like Stupid.

    It hurts too much.

    And, at least for me, far too often.

    Oh, and brother…and sister…let me tell you, you should have seen what a nervous mess I was in high school whenever I wanted to ask a question but felt it would make me look stupid(er) if I asked it, which pretty much encompassed just about any question I wanted to ask all throughout high school.

    Not pretty.

    I am not so bad about asking them now because, long ago, I embraced and (as is evident by all of the ridiculous nonsense that is going on in this ridiculous blog) even began exploiting my ridiculousness, right along with my insecurities and fears…and yes, even my infirmities.

    Over time and after a lot of uncomfortable suffering, I have learned that the best way for me to face and overcome all my insecurities, fears, and just about anything else that makes me feel foolish or awkward, is to break them down in my mind as far as I possibly can, no matter how serious or sad or sickly they may be, right down to the ridiculous.

    I mean, come on! How ridiculous is it that a six feet five-inch, former 230 pounder, former somewhat burly and excessively hairy self-proclaimed (remember now, I said former) “Manly man” could be afraid to ask a simple question, regardless of how stupid it is?

    Pretty frikkin’ ridiculous, that’s how!

    And that’s all there really is to this breaking-things-down-to-ridiculous thing.

    But in defense of my former self—no matter the size or strength or amount of body hair one has, Stupid, armed only with gnawing and piercing barbs of doubt and indecision, will whip just about anyone’s stupid ass just about every stupid time.

    But back to my ridiculous attempt at explaining how ridiculous just about everything serious in life can be…come to think of it, I should change the title of this ridiculous blog from here is where it hurts to TAKE NOTHING IN LIFE SERIOUSLY…SERIOUSLY!

    Nah, that would be a seriously ridiculous thing to do, wouldn’t it?

    Anyway…

    And once I have broken down my insecurities and fears and, yes, even my infirmities, to their most purest state of ridiculousness, I then can happily, and often giddily, laugh at them and ridicule them for their ridiculousness, and then exploit the bloody hell out of them like I so frequently do, mostly right here on your friendly neighborhood “here is where it hurts” ridiculous blog.

    So yeah, I do not really have a hard time asking stupid questions anymore.

    Howeeeever…depending on the situation or on whom I am directing the stupid question to…

    Every once in a great while, I just might have a hard time getting the gumption up to get that stupid question out.

    Stupid me.

    • When I was diagnosed with cancer, a form of leukemia called Chronic Myelogenous Leukemia in Blast Crisis with the abnormal Philadelphia Chromosome (a real tasty mouthful, huh?), everything happened so quickly and the chemo and the steroids and the other drugs were pumped into me immediately and so often, and because I knew so very little about cancer in general and CML in particular, not to mention all the procedures and protocols and pokin’ and proddin’ that it takes to treat it, either I did not or I could not ask the questions I now feel I should have asked about something as devastatingly important as was what I was then going through.

    All I could do, as I pathetically lay in my hospital bed while wrapped in my chemo and drug-induced blanket of fog, which I would occasionally and nervously peek out from under to stare blankly back at all the surreal, masked faces of my family and friends and doctors and nurses and social workers and cleaning staff and food attendants and anyone else who floated in and out of my room at any given time and who whose gracious mask-muffled encouragements sounded strained and distant, while their eyes spoke loudly with the voice of their heart of their concerns and their uncertainty and their fears, was to feel deeply and pitifully sorry for myself.

    That constant sorrow took just about all of my energy, leaving little for the care or concern to ask the questions I probably should have been asking.

    To cope with my lack of care or concern, and so that I could focus on feeling sorry for myself, I kept telling myself that I had little to worry about regarding this cancer thing because I was being cared for and treated by THE Johns Hopkins University Hospital, which was repeatedly voted as the number one health care facility in the nation. At least that is what all the self-promoting, self-congratulatory posters that were plastered everywhere advertised.

    Well, as we all know, regardless of an organization’s reputation, even if it is one of sustained superior performance and results such as JHUH says of its reputation, they are still filled with a fallible and fickled species called humans who, while known to do some pretty fantastically wonderful things from time to time, are also known to do some pretty ignorant and stupid things just about all the time.

    So, regrettably, in some part because I probably did not assume enough responsibility and make enough effort for my care early on to ask the questions I probably should have asked my doctors, and, in more than some part, because of a few stinkers of medical professionals who were involved in my care and treatment from just about the beginning of my cancer diagnosis and who, I firmly believe, excelled at mismanaging my said care and treatment in an exceptional manner, I feel that my health condition is worse off now than it should be as a result of our collective “efforts.”

    And that is how I have come to my belief that one should never leave the doctor’s office without asking at least one question.

    Here’s a quick question for you:

    What do you call the medical student with the lowest GPA in his or her graduating class?

    Doctor, of course.

    And here is another revelation that dawned on me during all of this cancer and subsequent Graft Versus Host Disease, stuff of mine:

    Doctors, as smart and highly trained and impressive and sometimes, not always, but sometimes, intimidating and overbearing as they are, are, fundamentally, only high paid consultants.

    When we get right down to it, they can only make recommendations and give advice, they cannot decide for us.

    Only we can decide what is best for our health.

    And for us to decide what is best for our own health, we must have as much relevant information possible to make the best decision possible.

    And as smart and highly trained and impressive as most of our doctors truly are, they cannot yet read our minds.

    For them to be the best consultants to our care and treatment they can be, and for them to be able to provide us with as much relevant information possible so we can make the best decisions possible, and regardless whether they want to or not or don’t have time to or not or are too tired to or not or whatever or not, we must ask them the most relevant questions we can ask.

    Some of these relevant questions will be deep and probing, and others will seem shallow and stupid, but all must be asked in order to prod and pull the genius-matter free from our doctors’ very big and very expensive brains so that it can be reconfigured and presented to us in a way that we mere mortals can understand.

    Asking relevant questions to very smart people like doctors, is tough, especially if these doctors are specialists. These stereotypicallybedsidemannerless barons of the brains are so smart, in fact (and in fiction, sometimes, too), that they probably have forgotten more about their area of expertise than we could ever attempt know, even if we factor in the internet. And when we do not know much of anything at all about the subject that we want to or need to know about, it is even tougher to ask relevant questions. And when we are afraid that by asking a question it might make us appear stupid, which may just be the case, then that is just about the toughest question of all to ask.

    But, we must find, or fight, our way through all that toughness.

    And if, even after we have gotten over our fear of looking stupid, we still cannot for the life of us come up with one single relevant question to ask, then at a minimum, at the very least, we should ask:

    “Hey Doc, if you were me, what questions would you ask you to help you, er, I mean…me?,” Whoa boy, now this question has me confused.

    Let’s try running through that question again.

    “Hey Doc, since I cannot think of any relevant questions to ask you, how ’bout you tell me what questions I should be asking you so that, with your answers, I will be able to make the best health care decisions possible?”

    Or…something similar, but hopefully much less discombobulated, to that effect.

    But you get the point, right?

    Just ask the damn questions, will ya?

     
    • Kiriko 3:13 pm on July 27, 2011 Permalink | Reply

      Good post. I’d be interested to know what aspects of your care you think they mismanaged– if you could do it over (not a useful exercise probably, but interesting) what would you change?

      Chet tells me stories about working with the residents and doctors at UCSF. Apparently they own brilliant, expensive minds, but also often are incredibly myopic in their application of their intellect to real-world situations (treating patients as collections of symptoms, not as whole people), and almost always lacking in social skills. People are just people wherever you look.

      Like

    • Kurt 5:05 pm on July 27, 2011 Permalink | Reply

      Well, the specifics of what I believe was mismanaged I would prefer you and I discussed offline. But generally what I would change is exactly what this post is about: I would have been more questioning and aware during the early months of my treatment. I assumed too much, especially that the information I reported about my condition to the various members of my team was being properly accounted for and tracked by all members, particularly the team leader–my attending oncologist, and, which I firmly believe, it wasn’t. Yeah, I can fill in all the juicy details whenever we have the chance for an extended talk. But if I had a do over, I would definitely be more questioning, more aware, and certainly more demanding of my health care team.

      Tell Chet he, as usual, is right on the money with his observations.

      Like

  • Kurt Brindley 1:55 pm on April 4, 2011 Permalink | Reply
    Tags: blood tests, , , , , eye GVHD, , , , , leukemia, liver GVHD, , , , , skin GVHD, , tacrolimus, Virgin America Airlines,   

    Caffeine Therapy – Update #2 

    Moon Face Kurt

    I had been feeling pretty crappy the past week or so and my head had swelled up even more than usual. This is what I saw when looking in the mirror.

    The tug of war between my leukemia oncologist and my Graft Versus Host Disease oncologist continues. As a reminder, when I met with my attending oncologist on March 24 he kind of got a little excited when he saw how high my liver counts were, since high liver counts are an indication that GVHD is flaring up in the liver. He immediately put a call in to my GVHD oncologist to see if he could get the specialist’s concurrence to either put me on an additional treatment or if he could raise the dosage of my current steroid treatment. The GVHD oncologist has the final say on all things GVHD as they relate to me and he wasn’t too concerned with the high counts, but he did want to see me in a week to see if the counts are trending up.

    The wife and I met with the specialist on Friday, April 1, 2011, and I must say, it was one of the most informative consultations we have had during my entire cancer experience. A lot of information, both good and not so good, was passed.

    First, the good news:

    The best thing about the appointment was that we learned that my liver counts went back down.

    From the beginning of my care with the GVHD specialist, which began the first week of November 2010, he has been consistent in focusing on the GVHD in my lungs and less so with the GVHD anywhere else. In fact, he said if it weren’t for the GVHD in my lungs, there would be no reason for me to even be seeing him. But he did say that had my liver counts continued to rise he would have taken pause to perhaps consider additional treatment for liver GVHD.

    But, as it is, the counts went back down so all’s good for now. As a comparative, here are the results of my last two blood tests for my liver: (Read: Component, Low Range, High Range, Range Units, March 24 Lab Results, April 1 Lab Results):

    DIRECT BILIRUBIN, 0.0, 0.4, mg/dl, 0.3, 0.3

    ALKALINE PHOSPHATASE, 30, 120, U/L, 173, 164

    ASPARTATE AMINO TRAN, 0, 37, U/L, 100, 70

    ALANINE AMINO TRANS, 0, 40, U/L, 263, 184

    The doc me that because of all the medication I am on and because my body will be fighting with my new marrow for the rest of my life, I can expect that I will always have some form of GVHD (in addition to my lung GVHD which is incurable and irreversible), be it skin GVHD, liver GVHD, eye GVHD, or others, and that my counts will always fluctuate up and down. According to the specialist, when it comes to reacting to blood counts, the key is looking for trends over time.

    When the wife asked him why my attending oncologist wanted to immediately put me on additional treatment of either Cyclosporin or Tacrolimus because of the high liver counts and the GVHD flare ups in my eyes and on my skin, he scoffed and replied that is because my attending oncologist is a leukemia oncologist, implying that he, as both a leukemia oncologist and a GVHD specialist had a deeper understanding of how to manage my treatment. Of course, that is what one would hope from a specialist, but it is funny to see how competitive, and sometimes snarky and rude to each other, these Johns Hopkins doctors can be.

    He went on to say that there was no way he would want to put me on either one of the drugs that my attending oncologist recommended because they are both so highly toxic that they would probably end up doing more damage to me than repair. He feels that I am already having to deal with enough toxicity from my current treatment plan.

    Which brings us to more good news: We decided to lower my daily Prednisone dosage from 60 to 50 milligrams per day.

    If you have never taken predinisone before, lowering the dosage by 10 mgs might not seem like so much; but in regards to this drug, 10 mgs is a lot. Lowering the dosage now is somewhat ironic seeing that a month ago, I was feeling so crappy that the wife and I were actually lobbying to raise the dosage in the hopes that it would get me back under control. Not much has changed in regards to how crappy I feel, but the specialist has made his point to me that this is just how my life is going to be from now on and it is better to get used to it now instead of potentially making things even worse down the road by adding even more toxic medicine into my treatment. I asked the specialist why not go ahead and drop me down to 40 mg, since he had always dropped me down 20 mg a pop until I got down to 60 mg. But he was concerned that dropping it by 20 mg would be too drastic and might send me back into the acute stage of my GVHD.

    So, 50 mg it is.

    I started with the 50 mg dosage of prednisone on Saturday, April 2, 2011. By Sunday afternoon, because I was experiencing achy joints and sore muscles, I began suspecting the onset of withdrawal symptoms from the lowered dosage. However, compared to the extreme withdrawals I went through after the first phase of my treatment back in February 2010 when the geniuses stopped me cold turkey after taking 180 mg of prednisone for two months, what I was experiencing this time was nothing. And as of now, noon Monday, April 4, I don’t notice any withdrawal symptoms at all.

    My hope is that the lower dosage will have more of an effect of lessening the miserable side effects and less of an effect of increasing the symptoms that I’m taking it for. That is a confusing way of saying that I hope that the lesser dosage will improve my mental state, reduce the size of my big head, improve my vision, and lower my risks of diabetes, among all the other side effects, and, I hope that it doesn’t exacerbate, or worsen, my GVHD and my neuropathy.

    Only time will tell.

    The final piece of good news is: The specialist has no problems at all with me adding caffeine to my diet.

    This is about the only area where both my attending oncologist and the specialist are in agreement. They both think that caffeinated coffee poses minimal risk to my liver and agree that if I feel that it is helping me mentally, then I should drink away. And believe me, I shall thank you very much.

    I have noticed that, as predicted, it seems that my body has gotten used to the caffeine and I don’t seem to be responding as positively to it as I was when I first started drinking caffeinated coffee again. But regardless, whether or not it is helping to regulate the effects the prednisone has on my mental condition, I like drinking coffee so that in and of itself is enough for me.

    Now, for some of the not quite as good news.

    My days of flying on airplanes are pretty much over. The specialist didn’t say that I couldn’t fly, but he did say that flying, at a minimum, would be a stressful, uncomfortable endeavor and at a maximum, could be deadly.

    Because of the condition of my lungs and of the unpredictable air pressure in airplanes, I will always need to bring a portable bottle of oxygen with me whenever I fly. He said long flights, like a fourteen-plus-hour flight to Japan for instance, would be very hard on me and I would really need to carefully consider the risks versus the rewards before attempting such a flight. I also need to consider where I am flying to, even on shorter flights. He said he could pretty much guarantee that I would end up in the hospital if I tried to flight to a high altitude place like Denver.

    Plus, because I cannot get my vaccines as long as I am on prednisone, which will probably be for forever, I should not fly to any country where there is risk of exposure to polio or tuberculosis or any of the other diseases that we are vaccinated for.

    More irony: My daughter just landed a sweet gig as a flight attendant for Virgin America Airlines. One of her perks is that her parents, c’est moi, can fly for free to just about anywhere in North America.

    Ha ha ha isn’t that just so funny…

    Yeah it is.

    Another bummer thing I learned/was reminded of was that I need to continue to stay away from dirt. Again, because the prednisone degrades my immune system so much I really have to be careful about catching cooties. So, essentially, there will be no gardening or yard work for me…in theory anyway…or doing anything else where there is a risk I might breath in some fungal or other kind of infectious nastiness.

    I guess the risk of infection continues to be my biggest immediate threat, and will continue to be so until the deterioration of my lungs gets to the point where lack of oxygen becomes critical. Who knows when that will happen.

    All in all it was a very informative appointment, one that helped to clarify the direction that I’m heading. Not all of the information was what I wanted to hear, but at least it all was as definitive as any information that I have received since the beginning of all this cancer madness. I guess that is about all I can hope for: clarity and definitiveness of purpose.

    Other than a follow up with my eye doctor on April 7, the next big event is my trip to the National Institute of Health in Bethesda, Maryland. The wife and I will be staying at a hotel for the week while I at poked and prodded and retested as part of my participation in a study to try out a new GVHD drug and a general study concerning GVHD in general. The wife and I are really looking forward to it. Hopefully the new drug will slow down my lung deterioration better than the prednisone is doing.

    Fingers crossed.

     
  • Kurt Brindley 10:30 am on March 14, 2011 Permalink | Reply
    Tags: , , , leukemia, , ,   

    Denial 

    Even now, nearly a year and a half later, it still seems that my whole experience with leukemia isn’t real, that it just could not have possibly have happened to me.

    Something of this magnitude only happens to other people.

    I know what I am experiencing is real, but it is just so hard to accept because the consequences are so big, so out of this world. My mind just cannot get itself all the way around it.

    How I feel about it is how I imagine one would feel during an out-of-body experience.

    And I feel the same way about my lung disease, perhaps even more so because the data is so sobering.

    And I feel exactly the same way about the disaster in Japan.

    If you have spent any time at all on this blog, you know that Japan is just as much a part of me as is my arm, or kneecap, or heart, or any other part of me.

    Just as with the leukemia and the lung disease, or as it would if I were for some reason to lose an arm, my mind is just not accepting the fact that so much tragedy has fallen on Japan.

    The horror that I am witnessing on the television and the internet cannot possibly be happening to the country I know so well and love so much.

    Something of this magnitude only happens to other countries.

     
  • Kurt Brindley 4:11 pm on February 21, 2011 Permalink | Reply
    Tags: ACTH, adrenal glands, blood pressure, , , cortisol, , , leukemia, , orthostatic hypotension, , , sodium, , stim test, stimulation test   

    Stimulating News 

    Ever since mid-December 2010, I have been getting light headed whenever I stand or lean over. A couple of times I have come pretty close to passing out. The last checkup I had the doc took my blood pressure lying down and it was 135 over 70 something. He then had me stand up and took it again. It was 110 over 60 something. A pretty significant drop.

    One of the many side effects of prednisone, the steroid I take to try to stop the deterioration of my lungs, is that it causes sodium retention. Because of this, the wife and I have really been cautious about my sodium intake, trying to keep it as low as possible. The doc thought that my low sodium intake was causing the light headedness so he recommended that I up my sodium intake a bit to see if that helps. I didn’t think it was the sodium and I let him know, but I said I would give it a try anyway since that meant I could eat more pickles.

    After having a couple of days to reflect, the doc decided he wanted me to take a Cortisol Stimulation Test, or Stim Test as it’s referred to in the business. Basically, all the test consists of is drawing my blood, testing my cortisol levels, then injecting me with something that stimulates my adrenal glands, and then at the 30 minute and 60 minute periods after the stimulation, drawing my blood and testing the cortisone levels again. Because the adrenal glands were stimulated, the level of cortisone should be higher.

    I just received an email from my doc that says: Your Cortisol stim test was normal response. There is sufficient amount of Cortisol, according to the test, to protect you against orthostatic hypotension [dizziness].

    That’s good news. However, even after increasing my sodium intake, I still getting dizzy when standing. Any of you smart people out there have any ideas what may be causing this? My gut is telling me it’s just a reaction to the cocktail of medicines I take every day but if you have any other ideas, please let me know.

     
    • Kami 11:22 am on February 22, 2011 Permalink | Reply

      Kurt: Have you tried to sit and dangle a minute before getting up out of bed/chair? Sometimes giving your body a minute to adjust to the posture chage will help. Even the slightest amount of dehydration will cause this symptom. Have you asked the pharmacy if certain combinations of meds would cause your symptoms? Maybe spreading the meds over a different period, or taking them in different combinations might work. Hopefully you will get some relief from this soon. Love You, Kam

      Like

    • Kurt 11:36 am on February 22, 2011 Permalink | Reply

      Kam,
      Yeah, I have to stand up in stages…or at least I’m supposed to. However, I usually forget to take it slow until I stand and take a couple of steps and the dizziness starts in. I’ve read about the effects dehydration on dizziness and I keep well hydrated so I don’t think it’s that. Haven’t talked to the pharmacist yet and would have to get concurrence from the docs on altering the timing or combo since they were pretty specific on how and when they want me to take them. But will definitely ask about it.
      Thanks Kam. Love kurt

      Like

    • Kurt 9:00 am on March 4, 2011 Permalink | Reply

      I just realized that I haven’t been getting quite so dizzy recently when standing. I wonder if it has anything to do with my recent return to coffee/caffeine. Further investigation required…

      Like

    • Jim Brindley 10:47 am on March 9, 2011 Permalink | Reply

      I read all your articles. I am amazed at how good you can write. Love,dad

      Like

    • Kurt 1:57 pm on March 9, 2011 Permalink | Reply

      Thanks Dad! I find maintaining this blog is a good exercise for keeping my mind busy.
      Love kurt

      Like

  • Kurt Brindley 4:58 pm on February 3, 2011 Permalink | Reply
    Tags: , , , , , , leukemia, , , wishes,   

    Wishful Thinking 

    There have been many o’ mornings throughout my life that I have laid in bed, fighting with the snooze button on the alarm clock, wishing that something would happen in my life that would make work go away forever.

    We all know the old saw: Be careful what you wish for because you just might get it.

    Well, I got my wish.

    I just didn’t expect it to be answered in the form of a debilitating lung disease.

    I was hoping more for…oh, I don’t…newfound riches…being elected king for life on a small tropical island…alien abduction…just about anything other than what I actually got.

    But as the new saw goes: It is what it is.

    So now what?

    Before the lung disease, I was messing around with that leukemia thingy for the past year and it had kept me and my family plenty busy. I was back and forth to the hospital so much and feeling so crappy I didn’t have the time or effort to do much more than sit around, take my meds, and feel sorry for myself.

    But just when I was starting to feel somewhat like what I used to feel like before all that leukemia thingy…just when I was beginning to ponder what it was going to be like returning to a normal life (normal meaning back to the daily morning battles with the alarm clock, the cursed commutes, and, of course, work)…just then…without any warning…BOOM…the doctor dropped the bomb on me.

    Lung disease.

    A lifetime with the constant feeling of slow suffocation.

    A lifetime of high, daily doses of steroids.

    A lifetime with the constant threat of diabetes and of osteoporosis.

    A lifetime with a degraded immune system.

    And, by the way, a lifetime of no more work.

    I didn’t see that coming.

    So much for my dream of helping to build a small company into a megarich, international conglomerated corporation and becoming rich enough to buy a professional sports franchise.

    I guess I’ll just have to stash that dream away with my other unrealized dream of becoming an international rock star.

    It all still hasn’t really sunk in yet.

    I’m only forty-five years old. Regardless of my disease, I plan on hanging around for a very long time.

    What the heck is a guy who has reluctantly been holding some form of drudgery…er, I mean, a job…since he first started delivering newspapers sometime around the time our nation celebrated its bicentennial birthday supposed to do with all of his newly “free” time?

    What the heck am I supposed to do with myself for the next however many years I have left on this rock?

    Well, I do have other yet unrealized dreams.

    One of them is to write.

    Not just bloggery writing like I am doing right now.

    I mean to really write.

    To write books.

    And not just to write them.

    To have them published.

    And not just to publish them but to write them in a way that people want to read them.

    I want to write in such a way that enables me to be able to proudly call myself a writer…An Author!…and not feel like a creepy, amateurish dork when I do.

    So that’s what I’m doing.

    I’m writing.

    I’ve written.

    I’ve written a novel called THE SEA TRIALS OF AN UNFORTUNATE SAILOR.

    I’ve written a collection of poetry called POEMS FROM THE RIVER.

    They will be available via e-book and pdf on (fingers crossed) February 19, 2011.

    You can read a synopsis and first chapter of the book at bojiki.com/book.

    But you know what? I wrote most of the novel and the poetry collection before I had all this free time that I now have. I wrote them slowly, sporadically, painfully, over a fifteen-year or so period when I was a working class stiff.

    Now that I can fully devote myself to writing I should be able to blissfully write for hour after hour every day, right?

    I should be able to crank out a novel every six months, or so, right?

    Well, maybe…but, I have quickly discovered that writing fulltime is hard.

    I am finding it hard to be disciplined enough to write every day.

    It’s hard to sit down with laptop in hand…er, I mean on lap…and to think of stuff that other people might want to read.

    I am finding that writing is like…

    work!

    Back when I was writing while I was still working out in the real world, writing was more like a hobby. I didn’t have to do it. I did it because it was fun…or at least cathartic.

    It was fun writing crappy poems and crappy short stories and a crappy novel because I didn’t have to worry about feeding my children from the proceeds of their sales. I could pretend I was a writer without actually having to make the commitment of calling myself a writer.

    Sure it stung a bit every time I received a rejection slip from publishers, but who cared. I still had a day job.

    But now I have no cover. I have found that writing full time is hard work and I have no fallback position.

    Well, I’m on disability so I guess I could always fall back onto the position of doing nothing. Do nothing but sit around, collect my monthly payments, and…

    wait…

    for…

    something…

    to…

    happen.

    Zzzz…

    Who the hell wants to do nothing for the rest of your life when you have a once-in-a-lifetime opportunity to recreate yourself into whatever you want to be (provided that whatever you want to be can mostly be accomplished within the confines of your home…and the internet)?

    I have declared that I want to be a writer.

    And I find that’s it’s hard work.

    And now I feel a little exposed.

    And a little vulnerable.

    And a lot like a creepy, amateurish dork.

    But I don’t wish for it to be any other way.

    Because we all know to be careful of what we wish for, right?

     
    • dogfaceboy 7:23 pm on February 3, 2011 Permalink | Reply

      It IS hard work. Lots of people do not understand how hard it is. Even harder is being published and getting terrible reviews by mean-spirited people who are jealous that you got a book contract, and they didn’t.

      If you are a writer, you really don’t have a choice but to write. There’s no fall-back. If you do it without expectations, it can only make you feel good.

      Good luck.

      Leslie (friend of Kimbro and Dave W.)

      Like

      • Kurt 3:38 pm on February 4, 2011 Permalink | Reply

        Hi Leslie,
        Is it safe to assume that you are the published writer you’re referring to who received the terrible reviews by jealous, mean-spirited people? If so, congratulations on your book contract. Can you share a link to where we can find some of your writing?

        Here are my observations in response to your comment:

        According to your definition of who a writer is, I don’t quite qualify to call myself one because, unfortunately, I do find myself having a choice as to whether I writer or not. In fact, by your definition, I would say no one would be able to call themselves a writer because we are all bound by the unavoidable act of having to choose.

        Now, I know that you’re just speaking figuratively when you say that “you don’t really have a choice but to write,” and I hope I don’t sound too dismissive of it or unnecessarily existential, but of course you have a choice. And thank God for it. For it is our choices that makes us who we are, that make us different, that make us special — not some undeniable cosmic force. And just like I don’t think it’s possible for anyone to consciously not have a choice when it comes to determining their course in life, I don’t think it’s possible to make a choice without having any expectations of that choice. Even the most ascetic Buddhist monks have the expectation of nothingness when sitting down to meditate. Sometimes our expectations are met, sometimes they aren’t.

        The simple fact is, some are better choosers than others.

        While I may want to be a writer, my ability to write is hindered by my exceptional ability to choose to do other things rather than write — some may refer this exceptional ability as a lack of focus, procrastination, or just being plum lazy — whereas you seem to have an exceptional ability to choose to write instead doing other things. Good for you, as is evident by your book contract and published work…bad for me, as is evident by my countless files of unfinished, half-baked stories and poems.

        It’s probably this exceptional ability of mine that also prevented me from being a professional basketball player, an international rock star, or an American version of Sir Richard Branson.

        Perhaps it would be safer for me to call myself a “thinking author” — that is, one who thinks long, hard, and often about writing but who does very little actual writing compared to how much he thinks about it.

        Instead of being something I blissfully do without choice, I regard the process of writing as I do exercise: I know exercise is good for me and I really do want to do it, but when I am out of shape, it is so hard to get up the motivation to do it. And when I do finally find the moxie to begin doing it, it is painful, embarrassing, and somewhat demoralizing. As time goes by, however, and as my body slowly gets back into shape and it becomes less and less harder to motivate myself to exercise, I find myself wanting to do it every day and for longer periods until finally I get to the point where my body is nearly as fine-tuned as it can ever be and if for some reason I have to miss a day of exercise, I become confused, irritable, and anxious. For better or for worse, that’s the writing process for me. I have gotten myself into great writing shape a few times in my life before and I loved how it made me feel; unfortunately, right now I’m a little flabby.

        I thank you Leslie for choosing to write your intriguing and provocative comment! :)

        And I apologize for my choice to respond with overly excessive and self-indulgent blather. :(

        Kurt

        Like

    • Kelli 9:19 pm on February 3, 2011 Permalink | Reply

      Have you read Three Weeks With My Brother by Nicholas and Micah Sparks; you might like it; the difficulty of writing as”work” is some of it

      Like

      • Kurt 9:51 am on February 4, 2011 Permalink | Reply

        No I haven’t but I just read some of the reviews for it and it looks like an interesting read. Will have to check it out.

        Thanks!

        Like

      • Kurt 2:11 pm on February 16, 2011 Permalink | Reply

        I just ordered the book. Looking forward to reading it.

        Like

    • Tanya M. 3:29 pm on February 4, 2011 Permalink | Reply

      Hi Kurt,

      I am slow at keeping up with your blog, but then again, I’m not sitting around with nothing to do. ;)

      Interesting enough, I started writing 10 yrs or so ago. I should have started sooner, but I was too busy allowing life to get in the way. My English teacher in HS told me “If you don’t write, it is a waste of your talent.” I held on to that vote of confidence, and intend to finish my novels “some day”.

      I am excited for you, as much as I am saddened for your circumstances! I know you will find much satisfaction, as well as success, as you continue writing from the heart.

      Warmly,
      Tanya

      P.S. Next time, be more specific when you wish for something. =)

      Like

      • Kurt 4:14 pm on February 4, 2011 Permalink | Reply

        Hey TM!
        What a coincidence…my English teacher in high school also inspired me; but her inspiration was more along the lines of: Brindley, if you don’t start handing in better work you’re going to fail this class!

        What are your novels about and how long do you think before you’ll be finished with one of them?

        It’s always great to hear from my Varen family. Please tell everyone hello for me.

        Take care TM!
        Kurt

        Like

    • leslie f. miller 4:12 pm on February 4, 2011 Permalink | Reply

      You answered my question. I do not have a choice. I write because I am a writer. If I stop, I stop sleeping and lose a part of myself.

      You, on the other hand, have a choice; if agent after agent rejects you, you can do something else. I can’t. I write.

      Fortunately, I get plenty of positive feedback, so my spirit doesn’t break.

      Like

    • Kurt 4:47 pm on February 4, 2011 Permalink | Reply

      Wow Leslie! If your photography is any indication of your writing, it’s no wonder you get plenty of positive feedback. It’s very captivating. I’m looking forward to spending some time with your blog and working through the links leading to your other writings.

      Have you done any collaboration with the Charm City Cake guy?

      Congratulations on your success as, not just a writer, but as a photographer, musician, baker, teacher, lifelong learner. Seems to me that you made some pretty good life choices along the way.

      Kurt

      BTW, since most of Dave W’s friends that I know are only able to communicate in grunts and foot stomps, I’m guessing your association with him comes through his much better half. :)

      Like

    • Jill 11:03 pm on February 9, 2011 Permalink | Reply

      Wow! Kurt, I am so sorry to hear about the latest round of crappy news. I continue to keep you and your family in my thoughts and prayers. You seem to be in good spirits and have a nice attitude about your new lifestyle. Count your blessings and keep plugging away at the writing. I love, love, love to read! Make your stuff available on Kindle and I will read it even more quickly! :)
      Love to you and your family.

      Like

      • Kurt 7:03 pm on February 10, 2011 Permalink | Reply

        Hi Jill,
        Thanks so much for your continued thoughts and prayers–they give my family and me strength and encouragement. I enjoy keeping up with you on FB. I especially like your updates about the antics going on in your classroom.
        Love to you and your family as well and prayers for your mother as she fights her own cancer battles.
        Kurt

        Like

    • rosieleepainter 5:09 pm on February 12, 2011 Permalink | Reply

      morrowish- yep lung disease- teeny bummer there- but go back and read again of what you have just written, you wrote a lot- a lot about having a lifetime of certain things- certain illnesses- but “lifetime” is good no? to have a life to experience anything in is still good yes? you have a choice – to dwell and feel miserable about it- but would it change things- you cant control what is going on inside your lungs- but what goes on inside your head- is the one thing you can change, manipulate and use to your advantage. that said- i dont have any problems with someone getting things off their chest (if only-eh) this is what blogs are for- and hope you dont mind me coming on here and being an outspoken old trout- what i said is said out of good intention and a desire to help- because at the root of it all- i know it must be really difficult but youve done amazingly well- dont forget that kiddo and its so important not to slip down a dark hole- stay in the light babes.

      Like

    • rosieleepainter 5:25 pm on February 12, 2011 Permalink | Reply

      good luck on your writing journey- this is a good idea- I have found your tweets and blog posts easy to read and interesting- i think you will be a good writer. I also think- that to focus your mind on a goal of endeavour (cat spell that word but have no inention of looking it up) learning, and advancement will be a good thing to do- I am trying hard to be a painter- so i can understand what its like to want to try at something- to have hope and dreams. we all need dreams- and all need something to aspire for- illness shouldnt be a barrier to this- not if you are able to do it- even if its only a bit each day.
      i will keep you up to date with my paintings too if you like- im improving all the time- one day I want to hold a local exhibtion where poeple can come and view my paintings- and of course hopefully they will say wow these paintings are so good”lololol- but i warn thee- doth taketh an awful loteth of work- and takes a long time does the art/creative lark to produce anything worth while for public consumption- but i can tell from your blog that it will happen for you and you are able to do- there must be a reason- why i have come onto this blog- out of thousands of others- and i think this is because i knew you had more to say about things than just cancer- which is a big thing to talk about- but you talked about other issues surrounding it- it fair blew me away when you recmmended that front line video- couldnt believe you did that- anyway- ill stop waffling now- i like to write too- have you noticed? lololllol-

      Like

    • rosieleepainter 7:05 pm on February 12, 2011 Permalink | Reply

      im really sorry- i just have to say one more thing- because if i dont say it now ill be too lazy to come on again specifically to say it

      here are my tips for writing- working alongside illness (though dont know about illnesses in terms of diseases/life threatening illness-ok)

      you may find that you have a small window each day to work in- realistically where you feel almost normal enough to work- this may be in the morning- – so i suggest- you do writing in the morning- or in that time where you feel ok
      people tend to get tired in afternoons even when they arent ill- mornings are always the best time to work in- particularly in the first hour or two after waking.

      unless you have meds that need to work first etc-

      have a routine of working and stick to it as consistency is the key- working one hour a day is going to pay more dividends than having a big spurt of five hours one day a week- because its not consistent- a plant that is watered a lot sometimes- but left without any water at all the rest of the time will not thrive- to have a plant flourish and grow it needs watering and feeding consistently- this is the same i find with creative work. work as routinely and as consistently as you can- even if its only half an hour a day-

      of course there will be days where you cant- too busy-

      it should go wihtout saying- but ill say it anyway- just dont work at all if yu dont feel well enough- besides the fact that you shouldnt put pressure on yourself- what work you do when you dont feel ok will be rubbish anyway- quite frankly- so dont even bother-lol- give it up- and only attempt to work when you feel at your best if not- its really only worth chilling out-

      negativity is the biggest hurdle to get over in creative writing and creative work- just be wary of those thoughts such as, “who am i kidding that i can do this”,or “im just not good enough to do this- i thought i could but i obviosuly cant do it as well as i thought” or “im just not well evough it will never work out” to be honest- it would take me all day to write out possible negative thoughts- as they can be varied and numerous-lol- amazing how many the brain can come up with. but when these thoughts do arise dont trust them as fact- they are pure conjecture- there is no evidence to support the need to carrying on writing or to give up writing, so one should just carry on doing it as its a good thing to do and will make you feel good

      you just dont know what you can achieve until you give it a go-
      in order to achieve anything you need to give it a proper chance and cutting it off in its early stages is not giving it a chance. but some artists find it easier to overcome self doubt than others but i can guarantee- they all have moments of it- some poeple have such catastrophic moments of it they cut off their ear (van gogh) it is something all artists in any form have to work through somehow- its not easy

      you may- or you may not- find that some ideas dont work out– but you just have to keep going with changing and adapting until you finally find your feet and flow, this could be weeks, months or years- just keep forging ahead- the main thing is that you are working and have dreams and hopes.

      happy writing!!

      Like

      • Kurt 12:50 am on February 14, 2011 Permalink | Reply

        Rosie Lee,
        Thank you for taking the time to provide me with your kind words, encouragement, and constructive insight and advice. You’ve given me much to ponder; and though I haven’t completely digested it all yet, from my first read-through I see that there is much truth in what you’ve said. I won’t try to respond to all of your points but I will say:

        You’re right, I probably am dwelling too much on my lung disease; at least, I’m sure, I’m dwelling on it much more than I did the leukemia. I don’t know why–maybe it’s because I was expecting that everything would return to normal after the leukemia; or, more likely, it’s because of the steroid-induced feelings of blah and anxiety that regularly overcome me like waves. But, no worries, I’ll work my way through this. I have a great support network from my family, friends, and from awesome comments/feedback like yours.

        But/and you’re also right about this blog being a place for me to get things off my chest. It’s usually not, or at least not always, my intention to be negative or rude here (Disclosure notice: One of my favorite sayings is (and as far as I know I coined it): IF NOTHINGS WRONG, THEN SOMETHING AIN’T RIGHT), and I really do enjoy knowing that other people are reading what I write, but ultimately, this blog, this web log, is first and foremost for me; it’s my personal journal of some pretty significant events that are happening in my life right now, which, for the time being, I am making available online for anyone to read or to not read.

        And you’re also right that I need to find a routine, a routine that accommodates not only my medicine induced daily ups and downs, but also my innate and overwhelming tendency to procrastinate. Fortunately, I have the time and desire to figure this out and hopefully get it right.

        And you’re right about many many other things.

        Thanks again Rosie Lee. Please visit and comment regularly. And good luck with your painting endeavors(sp?)! :) Is any of your work online? If so, can you share a link or two with us?

        Take care,
        kurt

        Like

    • Kurt 5:45 pm on March 23, 2011 Permalink | Reply

      Kelli,
      I just finished reading THREE WEEKS WITH MY BROTHER. It is a very good read. I especially like how it reminded me of two key points about life: life is about living, not about having; and the true joy from life comes not so much from what we do or accomplish but from the anticipation of what is to come and can be done and the act of doing.

      Because of all the tragedy, it was tough to read at times but I learned a lot from it.

      Thanks for the referral.

      Like

  • Kurt Brindley 1:22 pm on December 18, 2010 Permalink | Reply
    Tags: acute, , bronchioles, , chronic, , exercise, , , , leukemia, , oxygen,   

    Lung GVHD by Any Other Name 

    As I’ve tweeted in the past, I’ve contracted both acute and chronic Lung Graft Versus Host Disease as a result of my April 2010, Bone Marrow Transplant. For clarity’s sake, or perhaps to confuse things even more, I think it is important to be more specific in naming my lung disease. In my lab reports and in discussions with my doctors, in addition to Lung GVHD, it is referred to by several different names: Chronic Bronchiolitis; Constrictive Bronchiolitis; Focal Follicular Bronchitis/Bronchiolitis; but the name I will refer to it as is Bronchiolitis Obliterans, or BO. According to the doctors, it is the most correct name, and, most importantly to me, it’s the most fun to say.

    Say it: Bronchiolitis Obliterans.

    Wasn’t that fun?

    I am not going to attempt to explain the disease in detail; however, what I will briefly say about it is that it a non-reversible, degenerative lung disease that compresses and scars the bronchioles which blocks, or obliterates, the airways. Unfortunately, there currently is no cure for the disease, but it can be treated with a high-dosage, anti-inflammatory steroid regiment.

    I was also diagnosed with Acute Lung GVHD. Another name for this is Lymphocytic Bronchiolitis. Not quite as much fun to say as the other one is it? I have been on a steroid regiment since the end of October 2010, and the good news is I have positively responded to the treatment. My acute symptoms lessened as soon as I began taking the drugs. What a relief it was. Those who saw me prior to me starting the treatment can testify what a pitiful state I was in. In addition to the Lung GVHD, I also had skin, mouth, and lower GI GVHD. The steroids is taking care of them as well and now I have put on close to twenty pounds and I am getting stronger and stronger through stair climbing exercises and weight training.

    Of course I still have the Chronic GVHD, or Bronchiolitis Obliterans, and always will; however, because I have responded so well to the acute conditions of the GVHD, the hope is that the steroid treatment will be able to at least stabilize my chronic condition and prevent or postpone for as long as possible, any further degradation.

    Yesterday during a checkup with my GVHD doctor, I learned that I will probably be on the steroid treatment for the rest of my life. Not cool because the side effects are horrible; but, like I often have said about all the crap I put up with during the leukemia fight—it’s better than the alternative. I also learned that I will probably never again be able to return to work, or to a normal, vigorous lifestyle like I used to live. I don’t yet know what to say about this–I’m still processing the news.

    I do know that exercise and a healthy diet is going to more critical to me now than ever before in my life. I need to continually strengthen and condition my heart and body so that it becomes as efficient and as effective as possible with limited and possibly lessening quantities of oxygen.

    Bronchiolitis Obliterans.

    At least it’s still fun to say.

     
    • MH 3:51 pm on December 18, 2010 Permalink | Reply

      ask your doctor if you can go on oral beclomethasone. The effects of the drug regimen are outlinted in a paper authored by Dr. Chien, June 2009, in BBMT. It’s a steroid, but isn’t absorbed as much in the body. The regimen includes lowering the dose of prednisone.

      Like

      • Kurt 6:43 pm on December 18, 2010 Permalink | Reply

        Thank you for the information. What a great site/resource: http://bmtt.org. I have found several useful articles by Dr. Chien but I am unable to locate the one you reference. Can you please provide a link to it? Also, are/have you or someone you know using/used the oral beclomethasone?

        Thanks again!

        Like

      • Kurt 1:04 pm on January 14, 2011 Permalink | Reply

        MH,
        I think I found the article you are referring to: http://www.nature.com/bmt/journal/v45/n2/full/bmt2009129a.html.

        From the abstract of the article, it looks like the oral beclomethasone is used as a prophylactic; unfortunately, I already have lung complications so I wonder if the article discusses any benefits from the drug for cases like mine (I don’t have full access to the article).

        I will certainly bring it up with my GVHD doc during my next appointment, though.

        Thanks again!

        Like

    • Lynn 10:20 pm on December 21, 2010 Permalink | Reply

      I am truly sorry to read of the new difficulties that you must face. Is there no end to what this disease can throw at you? I finally got a clear scan last week, an early Christmas present for sure. One thinks when they get to the end of the treatment train trip, you’ll get off just where you got on. But that’s never the case. You end up in a different place, never to be sure of your body again. I hope you have a treatment plan in place and that you will persevere despite the obstacles. Have you read “the emperor of all maladies”? Sincerely, Lynn PEI Canada

      Like

    • Kurt 12:23 pm on December 23, 2010 Permalink | Reply

      Hi Lynn,
      Thank you for your nice comments and words of encouragement. I really do appreciate them.

      I wonder what you are being treated for.

      You are right: it certainly has been an emotional roller coaster ride. Just when I thought I was coming to the end of one ride, I get placed directly onto another. However, I’m thankful to still be riding. :)

      I have not read THE EMPEROR OF ALL MALADIES but I’ve listened to and watched just about every interview the author has done (the best I think was his interview with Charlie Rose) and I’m looking forward to reading the book. Once I do I will certainly write about it here. It’s funny…up until TEOAM, I haven’t been interested in reading any other cancer books except Harvey Pekar’s OUR CANCER YEAR. And the only reason I think I was motivated to read Pekar’s book is because he is from Cleveland, near where I’m from, and it is a comic book. Anway, have you read TEOAM? If so, what are your thoughts?

      Thanks for visiting and I hope to hear from you again soon.

      Kurt

      Like

    • Tanya M. 6:12 pm on December 29, 2010 Permalink | Reply

      Kurt,
      It is nice to know you have not allowed this disease to keep you down, no matter what obstacles it throws your way! You are missed at work, and thought of often. Keep getting better and stronger!! I hope the new year brings lots of good news and positive outcomes for you and your family!

      Warmest regards,
      Tanya

      Like

      • Kurt 12:56 pm on January 14, 2011 Permalink | Reply

        Hi Tanya!
        It’s great to hear from you! Please let everyone at work know that they are greatly missed by me and also thought of often. I’m looking forward to seeing you and everyone and getting caught up on how you’re all doing.

        I hope you have a great year both personally and professionally.

        Take care Tanya,
        Kurt

        Like

    • Diane S. 2:11 pm on July 1, 2011 Permalink | Reply

      I, too, have bo of the lungs. We had a friend from church that said “that stinks”! I had breast cancer, then 10 months later while pregnant found out I had AML–from breast cancer treatment. Immediately started chemo, fell into a coma, and almost died. During that time I lost my baby,….had to learn to walk again and to write my name! We adopted a beautiful baby from Vietnam in 2007, crossing major hurdles to do so, and when I got back, about 6 months later, was diagnosed with the BO. I am down to 33 percent lung function and am on Albuterol Sulfate and Pulmicort (which enables me to get a deep breath), Simvastinin, and Singulair. I’m now chasing after a 4 1/2 year old,…but it sure beats the alternative!
      I had my transplant April 12, 2003. What are your lung function test results if you don’t mind me asking? If you want, you can email me privately diane@bafflingmagic.com
      Thanks!
      Diane

      Like

    • Kurt 2:14 pm on July 2, 2011 Permalink | Reply

      Hello Diane.
      Thank you so much for sharing your story here. One could never understand or even come close to imagining what you have gone through these past years, but let me just say how encouraging and uplifting your display of strength, tenacity, and obvious positive outlook is for me, and I’m sure others, as well.

      Until I started on montelukast/singulair, my lung function was 46%, but it has improved at bit: the time before last it was 51% and the last time it was 49%. The positive trend has enabled me to drop my prednisone dosage down from 50 to 45 mg. Still waiting to see how I react to the new dosage. It’s always an experience, if nothing else. :)

      BTW, there is more gvhd discussion at my public facebook site https://www.facebook.com/pages/Kurt-Brindley/139776062742838. If you have a facebook account, it would be great if you would join us there to share your knowledge and experience. All you have to do is click on the link and then click the “like” button. If not, I look forward to hearing from you often here or anytime through email at kurt@bojiki.com

      Thanks again Diane. You truly are inspiring!
      -kurt

      Like

  • Kurt Brindley 1:56 pm on November 22, 2010 Permalink | Reply
    Tags: airport, airport screening, asbestos, body scanner, , cure, leukemia, , , , prevention, , Transportation Security Agency   

    I Want To Know 

    I Want To Know

    I Want To Know

    There has been much news lately about how the Transportation Security Authority’s new screening procedures are upsetting the traveling public and, to be honest, all of the whining is getting on my nerves. On the one hand, we demand our government guarantee us a safe, bomb-free air travel experience, yet we don’t want to utilize the advanced technology to help secure this guarantee because of our own fears and insecurities.

    What are we afraid of? That some TSA screener is going to get to see us bare and blemished? Come on. Haven’t we all undergone a doctor’s examination? Haven’t we already had to overcome our pretensions and shyness to strip bare in his or her office to receive a truly hands-on, prodding and poking screening in attempt to guarantee our health security? At the airport all we have to worry about is having a remote image of ourselves being seen by an anonymous government employee who has the unenviable task of actually having to look closely at and examine our scanned image in all its glory. Have you taken a good look at us lately? I certainly wouldn’t want that job. So lets get over it. Lets get scanned. Lets get screened. And lets do it with as little delay and complaint as possible so we all can get through the line and to our destination as quickly and stress-free as possible.

    Or is it not our insecurities of public nudity so much as it is our fear of the doses of radiation that the body scanner supposedly emits that forces us out of the body scanning line and into the alternate, hands-on, I-love-you-short-time screening line? Come on. Electromagnetic radiations are emanating at us from everywhere and we know it. We are basically being slow cooked regardless of where we are. Heck, we even carry around portable brain cookers in our pockets and purses–they are called mobile phones. What are the odds that getting an occasional body scan at the airport is going to cause us harm? What do we think is going to happen, that we’re going to get…cancer?

    Well, maybe we will.

    Maybe we won’t.

    Who knows, right? I sure don’t. I have no idea how that airport body scan, or the x-ray from our annual checkup, or our microwave oven, or our mobile phone, or our televisions and computer screens, or the power terminal that we used to play around when we were kids, or all of the other many environmental and life hazards like pollution, in all its forms, and stress, in all its forms, will impact our health.

    I don’t know…but I wish I did. I wish I knew how all of the radiation and pollution and stress impacted my health over the years. Does any of it have to do with how or why I became inflicted with leukemia? I want to know.

    My not knowing is not from not asking, that’s for sure. When I first was diagnosed with leukemia, I asked just about every oncologist who came within grabbing distance of my long reach what exactly caused my disease. Their pedantic responses, often laced with undertones of condescension and self-serving gravitas, sounded more like a jargon-laden abstract of an article published in an exclusive, onocologists’s-eyes-only medical journal than a clear and thoughtful response based soundly upon their careful study of all of my specific lab results compared against my very singular and personal condition and lifestyle. I soon tired of their tedious and inconclusive answers and stopped asking them.

    Perhaps I am being too hard on my oncologists. I have come to learn this past year that one would be hard-pressed to get a definite answer to just about any question asked to them regarding cause or diagnosis to any infliction, whether its concerning my leukemia in general or any of the multitude of subsequent ailments I have experienced as a result of my treatment. It seems that every response is heavily guarded by caveats and suppositions. Maybe they have become so conditioned by fear of litigation.

    So I began my own quest for conclusiveness. I cruised up and down the internet so many times in search for answers that I felt like a cross between Sam Spade and Clu. I searched through all of the search engines. I searched through WebMD. I searched through NIH. I searched through CDC. I searched through WHO. I even went retro and searched through my hard copy series of Encyclopedia Britannica and, in the end, the only real answer I came up with to how or why I became inflicted with leukemia is…it depends…which is essentially the short version of the long-winded blather my oncologists gave me.

    It depends. Such a disheartening answer to such a profound question.

    But there it is so I guess I have to let my oncologists, and the entire medical community for that matter, off the hook for not being able to provide me with a definite answer.

    Based upon what I now know, the cause of leukemia may depend on so many different variables—one of which is NOT hereditary, surprisingly—that it really is impossible to pinpoint the exact cause of why someone becomes inflicted with it. But, there are environmental and lifestyles conditions that may increase one’s chances. With this knowledge, I have narrowed the cause for my infliction down to the following few possibilities:

    • Pollution. I have no idea how much pollution I have consumed in my life; but I do know of times when, because of the work I did in the navy early on in my career, I had to breath in large amounts of ash and dust for up to eight hours a time on many occasions. I would cough up and blow out black gook for days after each occasion.
    • Asbestos. I have no idea if or how much asbestos I have consumed in my life; maybe none at all; or, maybe enough of the tiny particle stuff drifted down from the insulated pipes in the old school and office buildings I used to labor in to impact my health. There was a time in the navy, however, when I may have been exposed to trace amounts of it when I was involved with a team conducting a thorough inventory of my ship’s supplies. The team, including me, was immediately sent to medical for an occupational health asbestos screening.
    • Radiation. There are many ways to be radiated and there are many types of radiation. Types of radiation can be broadly categorized as being either ionizing radiation (xray, gamma) which are known to cause cancer, and non-ionizing radiation (microwave, radio wave), which is disputed within the medical and scientific communities as to whether this type causes cancer or not. I have no idea how radiated I have become in my life; but, as a telecommunications specialist in the navy, I was constantly working around transmitters (I know, non-ionizing) and many other sorts of electronic equipment for most of my career.
    • Lyme Disease. I’ll be honest, I have found nothing that links Lyme disease with leukemia; but, I contracted it in 2005 and, before the leukemia, it was the most horrible thing medically that ever happened to me so I really, really would like to be able to blame it for my leukemia.

    Unfortunately, neither I nor anyone else can say with any degree of certainty if one or all or none of these conditions caused my infliction. But here is to hoping and praying that someday a test will be developed that will. For once there is a way to determine the cause of leukemia, it seems to me that, in addition to providing a balm of understanding and a level of closure to the inflicted, it may also help facilitate the discovery of a means for preventing and eventually eliminating the disease all together. Until then we will just have to hope, pray, wonder, and wait.

    But there is one thing I am certain of—if I am ever standing behind you in a security line at the airport and you start making a scene about not wanting to go through the body scanner for whatever reason and it has a negative impact on my travel experience, you will know that the sharp smack you receive to the back of your head and its resultant pain was definitely caused by me.

     
    • Kristen 6:03 pm on November 23, 2010 Permalink | Reply

      This could not have come at a better time. I had been thinking about my opinion on this issue. My opinion is I would much rather be scanned then felt up AND I don’t care who you are, for my security and the security of our country, just DO IT ALREADY and quit complaining about it.

      Like

      • Kurt 6:21 pm on November 24, 2010 Permalink | Reply

        I agree with you Kristen and I’m glad to see that the protests fizzled and that travelers seem to be having a relatively easy go of it today at the airports.

        I was originally going to write a longer article about all the goofy TSA hooha on my Bojiki site but decided to use it here as a funny hook (at least I had fun writing about it) to help draw readers in to the more denser part of the article that attempts to highlight all of the ambiguities and unknowns of identifing the cause of leukemia.

        Thanks and Happy Thanksgiving.

        Like

  • Kurt Brindley 10:59 pm on October 21, 2010 Permalink | Reply
    Tags: bone marrow, , , , , leukemia, needles, nurse practitioner, , photographs   

    A Bone Marrow Biopsy 

    If you’re like me, you’ve probably never witnessed a bone marrow biopsy procedure before. That’s right, even though I’ve had more procedures done to me than I care to remember, I have never actually seen the procedure being performed on me. This is because, 1. I always have to lie on my stomach, and 2. I’ve always been too scared to try and look.

    But during today’s procedure, I mustered up the courage and asked my herculean wife to take pictures of it so I could finally see what it was all about. I call my wife herculean because she’s been exceptionally strong and courageous for me throughout my entire cancer experience; and after I saw the pictures, it amazes me even more how strong and courageous she really is. I know for certain that if the roles were reversed and I had to be there to support her during one of these procedures, especially during the first time, I would pass out. For real.

    I also asked my wife to take the pictures so I could share them with others who may be interested in learning and seeing what a bone marrow biopsy is all about. But please be warned, these pictures may be disturbing for some people. If you’re still interested, please click the more link. (More …)

     
    • Kami Powell 10:13 pm on March 1, 2011 Permalink | Reply

      I now have a better appreciation for this procedure. I had to lay on my side during the procedure. Since I usually live with back pain most of the time, I was groomed for the aftermath. Thanks for your encouragement. :)

      Like

    • Joe M. 3:26 am on July 13, 2011 Permalink | Reply

      After looking at the viedo and reading the after effects and the risks, I am more likely to not have it done, just for the after pain alone. I also don;t like being put out for the test, that just makes matters worse. Thers has to be a better way of testing, this almost reminds me of the Witch Doctor approach,

      Like

    • Kurt 12:42 pm on July 13, 2011 Permalink | Reply

      Kam,
      I’m glad the information was able to help/prepare you for your procedure.

      Like

    • Kurt 12:49 pm on July 13, 2011 Permalink | Reply

      Joe,
      To me the procedure was never really a big deal. A little sting from the shot that numbs the site. Then most of it after that is just uncomfortable pressure. Much of it has to do with the skill of the person administering the biopsy, I guess. I have had a couple of stinkers who did have a hard time getting the needle through the bone and into the right spot to suck out the marrow. That wasn’t any fun, I admit. However, regardless of how well the procedure went, the pain afterwards has always been insignificant to me, as well.

      Now I will say that I have overheard others talking about how painful the procedure was for them and how they could barely walk afterwards.

      I guess it all depends on how good or bad your health is and how well you manage these types of procedures and the associated pain that goes with them.

      I am not aware of any other alternatives to the procedures for why I was getting them, which was to test to see where I was at with my leukemia. I’m not sure why you would need one, so I am sorry to have nothing to offer to you in this regard.

      Good luck, Joe. If you find any alternatives, or if you do get the procedure done, I would love to hear from you about it.

      kurt

      Like

  • Kurt Brindley 3:05 pm on September 15, 2010 Permalink | Reply
    Tags: baldness, barber, , , fur, , , leukemia, mane, ,   

    Hair 

    Warning: This is potentially a TMI post. Read at your own risk!

    Kurt with hair

    Kurt with hair

    Before my cancer and all the chemo, I saw myself similar to how Ricky Bobby saw himself in the movie Talladega Nights: I’m just a big hairy American winning machine, you know. That was me. I was confident, happy, had a wonderful family, a great job, felt strong and in okay shape, and I had a thick mane of hair on my head and a decent coat of fur all over my body. I was no back shaver, mind you (not that there is anything wrong with those of my friends who feel the need to shave the back…you gotta do what you gotta do) but I definitely had some hair to be proud of. But all of that, especially the confidence, the being in shape, and the hair, changed after the chemo.

    Now I know some of you are wondering—I know I was before I started getting the chemo, so I asked my nurse—does one lose ALL their hair from the chemo treatments? The answer I got was that it depends. It depends on the person, the type of chemo, and the amount of chemo received. I would just have to wait and see.

    It turned out that during the first phase, things moved slowly hair loss-wise. It took several weeks before any hair on my head started falling out and a couple more weeks before my beard began thinning out. I never noticed the loss of any body hair. I will say, it was very unsettling when the hair on my head began falling out in earnest and I would wake up in the morning to see big piles of it all over my pillow and bed. Once that started happening, I went directly to the barber and had my head shaved.

    Shaved head

    Shaved head

    It’s not as easy as you think to get your head shaved. When I went, my regular barber was crowded so, not wanting to have to sit around and explain to the regulars about my cancer, I went to another barber that I had only been to once before. It was empty so I went in. The barber was a female and after I sat down and explained that I wanted my head shaved, she almost seemed offended, but in a cheesy, middle-aged flirty kind of way. She gave me the third degree and wanted to know why I wanted my head shaved. Still in no mood to discuss my cancer, I just said something rather curt about me being sick of having such thick hair to mess with. She reluctantly began shaving it off, but as she did, she went on the whole time about how a guy should never shave off such a nice head of hair. (I have another story about my hair and my youngest son’s ill-fated attempt at trying to shave if off…but that’s for another time.)

    I had a couple of weeks off between phase one and phase two treatments. During the time off, the hair on my head and face started growing back in rather quickly. But again, after a few weeks of the phase two chemo treatments, both head and facial hair began thinning out. Again, I did not notice the loss of any body hair. This time, because the hair on my head was so short, I was able to shave it off myself.

    Before the transplant

    Before the transplant

    During the first two phases, while I did lose a lot of hair, I never lost all of it on either my head or face. But all that changed after I received the large doses of chemo in preparation for my bone marrow transplant. About two weeks after the treatment, hair everywhere began falling out. And by everywhere, I mean everywhere. After about a month, the only hair I had left on my body was my eyebrows and my eyelashes. My body was smooth as a newborn baby. I won’t go too much into details, but I will say, things feel a lot different without hair in the places where you’ve been used to having it. I was left feeling very incomplete and somewhat insecure. I didn’t like it at all.

    But now, finally, it’s all coming back and I’m beginning to feel much more like my old self. And by old, I mean much older. As you can see, even though I looked older than my age before, this whole cancer ordeal has aged me even more. And even though I’ll still be completely gray on top, I’ll be glad to have it back and I promise not to complain when it once again gets too long and too thick and too hot on my head. And I won’t, in frustration, ask my son to shave it off (again, we’ll leave that story for another day).

    Coming back!

    Coming back!

     
    • Kiriko 4:50 pm on September 15, 2010 Permalink | Reply

      Lookin good! I bet by the next time I see you you’ll be back in full-on hairy mode again.

      Like

      • Kurt 11:12 am on September 16, 2010 Permalink | Reply

        We’ll see. Hopefully it will be soon, though.

        Like

    • Kristen 5:18 pm on September 15, 2010 Permalink | Reply

      Great to hear that you are feeling more like yourself. The fact that maybe you’ve aged a little more doesn’t matter. All your friends and family will still love you.

      Like

      • Kurt 11:14 am on September 16, 2010 Permalink | Reply

        Agree. Definitely not worried about how old I look. I was just making an observation. I will take recovering while looking a little worse for wear over the alternative any day. :) Thanks Kristen.

        Like

    • Lynn 11:30 pm on September 15, 2010 Permalink | Reply

      Our haircuts look remarkably similar at this point. The all white is definitely a new but interesting look.

      Like

      • Kurt 11:22 am on September 16, 2010 Permalink | Reply

        Hi Lynn. Unfortunately, the all white look is not new for me. My original hair color started calling it quits on me when I turned 18. What is not necessarily new but more prevalent, is the leathery, aged look of my face and the weak, sore, barely responsive muscles I have. Just goes to show how hard my body has been and is working for me to keep me around, I guess. :)
        Take care,
        kurt

        Like

    • Jodi 8:09 pm on September 17, 2010 Permalink | Reply

      Appearing Old… Bah!!! Experienced maybe, but that is ALWAYS a good thing!! You have proved the old adage yet again… men age better. :-)

      Glad to see you smiling and posting and all around doing well.

      Love ya,
      Jodi

      Like

      • Kurt 8:52 pm on September 17, 2010 Permalink | Reply

        Hey, there you are. Hadn’t heard from you in a while and was wondering where you been. Yeah, feeling better day by day. Glad to hear from you. Give my love to the family.
        Love kurt

        Like

    • jackie myers 4:26 pm on September 18, 2010 Permalink | Reply

      Hey Kurt…looking at all the pictures and I see Jim Brindley…quess you have to be my age to know that….you are as handsome as ever!
      Love to you!

      Like

      • Kurt 9:43 am on September 19, 2010 Permalink | Reply

        Hi Jackie! I’ll make sure my dad hears about the nice compliment you gave him. ;) Always nice to hear from you and thanks for all your support.
        Love kurt

        Like

    • chihi 8:23 pm on September 18, 2010 Permalink | Reply

      When I saw your present picture, I thought it was your father’s old days’ picture! You look wise just as much as philosophers do…and I know you are! Thank you for telling us this very personal story! Love, Chihi

      Like

      • Kurt 9:44 am on September 19, 2010 Permalink | Reply

        Hi Chihi! Thanks for always being there for me. I hope the story made you laugh. I had fun writing it. Please give my love to the family.
        Love kurt

        Like

    • Christie 10:10 am on September 22, 2010 Permalink | Reply

      Hey Kurt,
      You look great! Thanks for being soo open through out this entire experience. I think u look more distinguished and even more when all of your hair comes back. Glad u haven’t lost ur sense of humor.

      Like

    • Kurt 12:35 pm on September 22, 2010 Permalink | Reply

      Hi Christie! It’s great to hear from you. Thanks for all of your support throughout this ordeal. Please tell everyone at work I said hello. Miss you all!
      Take care Christie and thanks again.
      kurt

      Like

  • Kurt Brindley 5:24 pm on September 14, 2010 Permalink | Reply
    Tags: agent, , , , leukemia, , revisions,   

    Book Update #1 

    THE SEA TRIALS OF AN UNFORTUNATE SAILOR Manuscript

    THE SEA TRIALS OF AN UNFORTUNATE SAILOR Manuscript

    I have been poking around writing, and thinking about writing, my book for nearly ten years now. It has been a long and mostly frustrating process where progress came only in fits and spurts. To be honest, I thought I was never going to finish it. But then along came my leukemia diagnosis and an extended break from work, which has provided me with plenty of time to write and which I have been trying to put to good use.

    A little background on process: The way I write is to write the first draft longhand in pen. After I would have several chapters written, I would then hit the computer and type them up. Sometimes I would do edits and revisions right away on the computer, but mostly I would tinker with them whenever the mood hit me. In my view, by the time my cancer came along, the chapters that I had written, about 30,000 words worth, were relatively tight. I’m not saying the chapters were any good, I’m just saying that they were already pretty well edited and revised.

    From November 30, 2009, when I was diagnosed with cancer, to about the end of April or mid-March 2010, after my bone marrow transplant and a bit of recovery time, I didn’t work on the book at all. But from March until now, I’ve been chugging along on it pretty good. I finished penning the first draft August 22, 2010, I finished typing it up August 25, and I am now more than halfway through with the first revision.

    The first draft finished with twenty-seven chapters and about 45,000 words. So far during the first revision, I’m at twenty-nine chapters and over 55,000 words. As we all know, major publishers won’t even consider a novel unless it has a minimum of 60,000 words, so I still have some work to do. At the rate I am going, I think I should end up somewhere between 65 and 70,000 words. For a reference point on word counts, THE CATCHER IN THE RYE has just over 73,000 words.

    Because I had been working on the first half of the book so long, I breezed through the first fifteen chapters during the first revision. But now, as I begin revising the newly written material, it is taking much more effort and concentration. Because I’m still recovering and still pretty weak, I tire out easily. But my goal is to finish with the first revision by the end of September and finish with the final revisions by the end of the second week of October. After the book is finished, I will begin the agent hunt and all the fun associated with that. We’ll see how it goes.

    You can read an overview of the book and the first chapter here.

    Stay tuned for more updates!

     
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