A medical update, at least.

 

 

DSCF2879

 

It happens sometimes that I am overwhelmed enough by what is going on that I have a hard time finding the words.  I have things to report, issues to discuss, but can’t find the focus to put it down in writing.  So time passes and things keep happening and more ideas pile up and the post that needs to be written gets bigger and bigger and more and more intimidating to tackle, so it doesn’t happen.  I’m finding myself in one of those cycles now.  The bike show, and its aftermath were a pretty emotionally draining time.  I’ve sat down a few times now to try to write about it and have come up short.  IN short, by the time labor day weekend rolled up I was running on fumes..  I had reached the end of my rope, tied a knot, and was hanging on for dear life.  I had changed pain medication the weekend before and was having trouble adjusting..  The wonderful, productive (and to others, I think totally annoying) mania that I experienced for much of the summer had dried up. Whether I was aware of it or not, I think my baseline level of pain had crept up another notch or two.  To get the show to happen became that tight wire act that I have described before, where simply staying up takes TOTAL focus, and anyone who distracted me from that goal suffered the tyrannical wrath of self involved single minded focus.  In other words.. increasingly, as the show approached, I think I was becoming pretty impossible to take.  And by the time the show was all wrapped up, those the closest to me weren’t really feeling all that close.  I was delighted to have raised $15K for hospice, but wasn’t really feeling like I had anyone to celebrate with.  I was also feeling a little too confused and embarrassed about what had happened to be able to write about it.  I am STILL feeling too confused to be able to write about it with any authority.  But I CAN say that for one of the few times in our relationship, Hill and I were not on the same team.  I was feeling a certain level of postpartum depression around the show.  And I arrived at that particular horizon and stepped into the void beyond it to find myself pretty alone.

At any rate, I wasn’t in a position where I felt much like writing.  I’m still not really feeling as though I can adequately discuss that particular stretch of time.  But I felt as though I needed, at least, to touch on it before leaping into the more recent updates.

Over the couple of weeks following the bike show I tried to find ways to be productive..  working on that bloody run of pill flasks.. I’m having trouble thinking what else to be honest.  It wasn’t a great couple of weeks really.  Not much bike riding.  Not much making stuff.  Not much feeling close to my little family.  Not much luck being less irritable.  But a week ago friday a possible culprit revealed itself.

I had been needing a little more break through medication gradually as that week wore on.  On thursday night I knew that I wouldn’t be able to sleep without taking some extra.  Still I woke up at about 3:30 with pretty sever pain deep in the right buttock (one of several chronic pains that crops up).  I took some more break through medication and sort of went back to sleep..  woke up again at 4:30 in absolute agony.  Trying to reconstruct what happened from then until the following evening is going to be almost impossible for me, but I can sum it up.  The pain was at the same level or beyond that which landed me in the hospital 4 months ago,  and no amount of breakthrough methadone was touching it.  I was suddenly experiencing an entirely new realm of discomfort.  Hill was on the phone for me talking with Hospice people who reassured us that we should not be shy about taking the meds, but it wasn’t working.  At some point VERY early in the morinng we got a call from my hospice Doc, Dana, who took an inventory of what meds we still had around and switched me to dilaudid at a dose that finally soothed the situation a bit but the pain was very persistent.  Ultimately to get things under control involved knocking me more or less unconscious for the day.  Dana came to examine me in the late morning.  Just her presence was soothing.  She’s a bit of a miracle.  I was so drugged at this point that I repeatedly dozed off as she checked me out..  I vaguely recall Hill and Dana laughing at me as I pretended to be following what was going on.

I’m not telling the story very well, but the point is that just like 4 months ago my baseline level of pain had somehow risen to a level that I was simply unable to cope with at the current dose of baseline pain medication.  It had knocked me off my tight rope again and was demanding a different level of attention.  So we boosted my baseline by a sort of staggering 50% AND  switched me back to dilaudid.. more frequently.. as breakthrough pain management.  I spent friday in a completely drugged haze.  I tried, I think on Saturday, to report this news, and again on Sunday, but simply couldn’t make it through a sentence without dozing off (I am still, a week later, adjusting to the new level of narcotics). BUT the pain seemed to be back under control.  I played some pool with JS on Sunday, and was a little dozy, but at least was able to play..  felt like I was out of the woods.

I’m having trouble remembering the chronology of it all..  but somewhere in there I had to irrigate, and it did NOT go very well.  It took a LONG time, was painful,  and was not very productive.

By Monday evening I was feeling some intestinal discomfort.  Gas pain, I guessed.  I had already planned to make a particularly refreshing stir fry for dinner, something with a lot of fresh ginger, to settle the stomach, but by the time I put it on the table, my own guts were hurting enough that I opted not to eat.  I went off to bed with no dinner, and before long was lying there with intestinal cramping pain that rivaled the pain I’d just spent several days trying to get under control.  At 3:00 that morning I found myself in the bathroom trying to irrigate thinking that might relieve some of the pressure that I was experiencing, which honestly felt powerful enough to rupture my intestines.  I knew, of course that I was taking a bit of a gamble.  That pumping a liter of fluid IN to guts that already felt as thought they were about to burst, was potentially a terrible idea..   But my wee hour logic, won out.  I knew that over the last bunch of days I’d taken WAY more narcotics than my body was used to, that this had undoubtedly left me pretty constipated, and I talked myself into believing that the pressure I was feeling was the pressure of some very full bowels that simply needed release!  That irrigation could do it!  That it would be pretty uncomfortable to do, but that the payoff would be enormous.  Well.  I was right about it being uncomfortable to do..      If I had to guess I’d say that about three quarters of the liter of water I put in there stayed and simply added to the discomfort.  After an hour of writhing around on the toilet waiting for something to happen, I gave up.  On my way back to bed I took a swig of Milk of Magnesia, just for good measure, and instantly started to projectile vomit brown water that looked and smelled like what should have been coming out of my stoma.  Hill was awake at this point.

“Baby?  Are you ok?”

“No.”

I was not at all ok.  It had been a really difficult 4 or 5 days after a really difficult 3 or 4 weeks, and I was kneeling on the floor in the bathroom in a puddle of shit water that had just come launching from my mouth, without offering me any relief.  I was exhausted, getting ready to climb into bed with an irrigation sleeve still attached, just in case.  I felt no real confidence that I’d be able to sleep, and no real confidence that I’d even make it through the rest of the night without my bowels rupturing and killing me in one of the more disgusting ways this disease could..

I did fall asleep eventually.   I slept off and on until around 4 the next afternoon, in fact.  People came and went, mostly just sitting quietly and reading while I slept.  Hill, Special Ed, my mom.

Judging from your comments on my last (non) post, it seems that about half of you believe that I’ve simply been off having too much fun to bother checking in on the blog to keep you all up to speed.  I wish that was the case!  Instead it’s been one of those times that what I have to say is either difficult to talk about, or difficult to report (if you see the distinction).  But there it is.  The last three weeks or so.  Not very well told, but at least you get the picture.  The whole thing has left me feeling pretty diminished.

Then again.  When I came out of the hospital 4 months ago having been told “weeks to months” (still ringing in my ears), I felt pretty diminished as well!  AND, once I adjusted to that new reality..  the new baseline levels of both pain and pain relief..  I went on a real rampage of creative productivity.  Maybe it’s a cycle.  Maybe I was just due for a little reality check (“kid..  you ARE still dying..”)   And now that reality has been checked I can go back to some sort of inspired creative mania! But, maybe this time with a little more wisdom about the impact that sort of mania has on those around me?

Fingers crossed.

 

This is a lousy post..  but had to be stumbled through.  More Soon.

108 Responses to “A medical update, at least.”

  1. Kamma

    Big Love to you and yours. Sending peace, love and understanding your way while you go through this part of your journey.

  2. JT

    Oh beautful Ez. Just returned from Interbike in Las Vegas and was thinking about you often. So much love coming from Lake Tahoe. Thanks for the update…

  3. Cory

    Thoughts are with you, Ez. I’ve been thinking of you a lot the last week, worrying that something like this was the case. For whatever little it’s worth, we’re thinking of you.

  4. D

    Your strength, creativity, and warmth are moving and inspiring. Thanks, again and again, for sharing with us. If only all your many readers could each take a little bit of that pain for you… Wishing you comfortable, joyful, restful, and productive days.

  5. djohan

    you are a strong man. i wish my words could provide some
    sort of relief. but i need to at least throw these words out to you, my humble words of what i hope would be some kind of support. stay strong.

  6. Holly

    Love to you and Hill and Putney. I don’t know what else to say. <3

  7. Steve

    Do the best you can, Ezra. That’s all any of us can do. Friends and family will understand, despite the pain and difficulty you are going through.

    Just got back from a week in VT and thought of you often. What a wonderful area of the country to spend your youth. And the food!…OMG.

    Peace to you.

  8. Jen

    Ug. I feared when there weren’t any updates that there was not anything positive to share. I don’t even know what to say except that it hurts my heart to read this and I hope you’re right, that it’s just an uncomfortable reminder but you’ll be back at living your life and being active once you re-acclimate to the new medication levels.

    Much love.

  9. Leslie

    Ezra, I’ve been following your story, thinking about you lately, I’m sorry to hear things have been rough. Take it easy on yourself and keep the most important things up at the top of list. Focus on what’s most important. Sometimes it’s the creative work, sometimes it’s the people you love and sometimes it’s just yourself. Hang in there. xo

  10. aRobin2

    Not a lousy post, just a realistic one and one that many of us feared; some of us even engaged in wishful, magical thinking of hope rather than fear that you were spinning in some whirlpool of pain, which you were/are. Physical and some emotional too, it seems. We “posters” scramble for our own words to try to offer you some small offering–love, hope, support, all while we know our words can’t do, change, fix anything. So please remember, we are here to support, not judge, request or have expectations. When you can share or you wish to, you will. We send our love and support to Hill too–she who lives with Ezra along with maybe an altered Ezra, at times, she who copes, loves, supports, may sometimes be muted by unspeakable thoughts, fears or hopes. Ezra, to have irrigation as your best option is ruff! at best, but when that isn’t working, well, there truly are no words. May your days, pain meds., emotions, relationships all feel better and be what you need. As Putney would wish, heal or heel! ;) As we hold steadfast and wish or hope, no one believes this is a skate or bike or walk or picnic. We continue to surround you with love and if we could each bear a bit of the pain to lighten your load, we would. Peace, light, love, the wag of a tail, our collective hugs and whoosh of warmth when you need it most, XOXO

  11. Robin

    Dear Ezra, sorry for this update but just know that it does not matter how you write or create at this point. Just keep being who you are and understand that we love you and just want you to feel the best possible. You are very strong and have done tremendous under such difficulty. Relax and just do what you can. You have a fighting spirit that will find the better days again soon. Until then, love to you and Hill. xo Robin

  12. antbee

    Thank you for the update, Ezra, but I am a bit disturbed and confused as to why you feel you owe any of us an explanation as to why you are away for a while. Sure, I was worried that something medical was keeping you away, but that is understandable, because, cancer. I have no expectations of you, and I would hope that a lot of other people who love and care about you on here and in real life, have none either. I just expect you to do what you can to lead a somewhat comfortable life, you owe me nothing else.
    I have been following you from the very beginning, ever since a knitting friend, John B. posted a picture and information about a hat he knit for you, but I have not been a regular commenter. I would check in to make sure you were doing well or whatever your condition may be at the time, but I didn’t comment much. I just wanted you to know that I have been here, and am not just a bandwagon jumper.
    I hope you’re doing better. Remember, you owe us nothing.

  13. Elizabeth

    Oh Ezra, it is so good to hear from you, even though so much of what you are dealing with is so difficult. I think your experiences in trying to proactively manage pain, wrestling w/ the side effects of the narcotics (which are often so vicious), and trying to maintain a hold on your own sense of self and sanity through it all are so very normal. I hope you can be kind to yourself, and know that your family will always know the Ezra they love, even during days when things seem so hard.

    I loved someone through a brutal (and terminal) illness and we had years longer than the medical professionals predicted. Much of that time was great, much of it was hard or compromised somewhat by his illness, and some of it was really awful. There were days when we fought and said awful things to each other, and really disliked how we were behaving. I cherish even those times though because this is life. It isn’t always pretty, it sure isn’t always easy (especially for you), and we’re just a bunch of imperfect people doing our best. Trust that the deep love you share with your family will not be damaged. It will bring you (and them) through.

    I hope the sun comes out for you this week and you get another chunk of enjoyable time. Perhaps a slightly more peaceful version this time! :-)

    Thank you for keeping us posted. Your updates don’t have to be thorough, or perfectly crafted, or even all that informative – please don’t put that kind of pressure on yourself. In fact, maybe you even delegate occasional updates (if you wish to provide them) to someone else. You don’t owe us anything – that’s for sure – but I am so glad to hear from you today.

    Sending the warmest possible wishes for better days…

    Elizabeth

  14. Mette

    Thanks for the update. I’m so, so sorry to hear that you’ve had a rough time. I wish there was something I could say or do to help. Just know that you are extremely brave and that you are touching the hearts of so many people, who have never met you. We are all out here thinking of you, every day. Sending my love to you and your close ones.

    And yes, that reality check better be checked now. X

  15. MARLENE MARINO

    Ezra,

    I check in with you often and almost every time I read about you being in any discomfort, I think to tell you to research Iboga but I just don’t tell you that. Now I’m telling you. Research Iboga. If you don’t already know about it, it’s a VERY powerful plant medicine that helped me more than anything or anyone has ever helped me in my lifetime. More than anything, I want peace for you. Because that’s the cat’s tits. Happiness comes in waves, but peacefulness will grow. Maybe it sounds crazy to recommend, but fuck it. So there. Sending love to you and Hill and your family, but mostly to you. Big, FAT, warm, red love.

  16. biryanilady

    Not a lousy post. A real post.

    It is good to hear from you.

    What you’re going through is not easy and you’re dealing with so much. Don’t worry about being graceful through it. Grace, being what it is, will find you. As will mercy.

    Holding you and yours in the Light, and wishing you
    Love.

  17. Bob Bonn

    All your pain is our’s, all our love is your’s. God Bless You.

  18. dyllan

    not a lousy post at all…thankyou

  19. Kamala

    Big love from NC big brother.

  20. Laya

    Thanks so much for the update, Ezra. . .and I’m so very sorry to read about all the pain and nonsense you’ve had to deal with. Hopefully your doc is keeping the constipation vs. the “narcotics needed for pain-control” in a balance. And here’s to better days ahead. . .

  21. John

    Ezra,

    I’m fighting a different war that has battlefields resembling those you have been on recently. I found a daily cup of Smooth Move tea, whether you felt it was needed or not, was a great way to avoid digestive distress – but do check with Doc Dana to make sure Senna is ok. Also, the motion of cycling helps keep things moving (watch what a mother does with her constipated infant – they pump their legs) – part of my daily therapy.

    Your courage and willingness to share this journey with is a gift and an inspiration – thank you.

    John

  22. Sarah

    Thinking about you, every day.

  23. kelly

    I can honestly say that I think everyone here who responds, who doesn’t to any of your posts loves you. We all do. And support you. You just keep doing what you need to do. Glad you are feeling a little better and I hope you find some comfort. Love to you, to Hillary and to Putney. XOXO

  24. Mark

    Good to hear from you, Ezra. Positive thoughts coming your way.

  25. Alicia

    Thank you for sharing. I wish we, your readers, could help you make this easier for you. We can’t. But we can share your emotions and learn from them. And if it’s any comfort to you at all to know that you are touching people across the globe, please be assured that you are.

    Much love.

  26. mary m

    I’m glad you chose to update the blog… Still thinking happy thoughts, and even with all of what you laid out, you are still positive.

  27. maria

    You are in my thoughts, Ezra, in this super tough time. Thank you for the dispatches from your world however painful it may be. Thank you for taking the time to share your story. Love& Peace

  28. DeAnne

    you are in my prayers

  29. Bois

    This is NOT a lousy post. I read every single word. This post was pure and real in every sense and every thought you share teaches us so much – not just about you, but about us and about life. You do more for the rest of us than you can possibly realize. This is like your photography – where you focus is what matters to you and what matters to us. It must be tough when everyone around you is trying to feel your pain, but you know fucking well that they can’t begin to understand. Still, I hope you never forget they’re there – even those that barely know you!

  30. Catherine

    There’s always the down side to the upside, and happily there’s always an upside to the downside. Sounds like you’re about to go back up! (I don’t mean to sound flippant and light,not at all – for me, when I’m in the downside I can always remember to look up. Thank you for sharing all that you do. <3

  31. Sark

    Don’t know what to say Ezra.
    I read your post and feel drained.
    Its not a lousy post..your honesty and emotion..it demands respect.

    I am thinking about you man! I talk about you with other people.
    You are on our minds.

    Love and respect

    S.

  32. carolyn

    please, i beg you. find an ND (i have one) and get an IV drip or push of very high dose vitamin C

    it will diminish the pain and allow you to take less medication, less constipation, less drowziness

  33. JOn Kennedy

    Sorry to hear this. Just returned from Interbike myself and thought of you while there. You don’t even know me mate, but your work, writings, and photography have made a lasting impact on me. I am wishing you the best.

  34. Rachel

    Sending you positive vibes

  35. Jackie

    It was a great post, not a lousy one. Thank you for sharing.

  36. Caitlin

    Ebb and flow. Human! Beautiful. Thank you.

  37. Luisa

    You’re in my thoughts, Ezra. Much love from SoCal.

  38. Elizabeth

    Thanks for the update, and take care.

  39. joni

    A few years ago I saw a documentary about kids with Tourettes Syndrome. One girl said she could control her tics during the day as long as she maintained Total Focus At All Times. She could not tolerate any distractions out of fear she’d lose control in front of everybody, so she white-knuckled her focus all day at school. Then she went home. They showed clip after clip of her at home where all the tics she’d fought so hard to suppress around everyone else were unleashed in a torrent on her mom. She’d twitch and shout and cry for hours. She’d stand in the middle of the room and pull out fist-fulls of her own hair while cursing at her mom in frustration. Every day she did this. The filmmaker asked the clearly suffering mom how she felt about that – that her daughter fought to be on her best behavior for everyone else, only to heap the fallout on her. The mom was worn out, but said truthfully, “I wouldn’t have it any other way. I’m thankful she feels safe enough to let down in front of me.”

    I sometimes feel like I can see your brain spinning off, Ez, and I wonder how much mental torque you have to apply to walk a straight line thru your day. I imagine it’s a lot. There’s fallout from that. I’m not saying keep it up ha ha, I’m just saying Hillary is clearly the one you love and trust the most and in a backhanded way that’s really touching. I feel good about a rebound to stasis after this med switch. I really do. I’m sorry it’s been such an awful transition. Thanks so much for the update. That third photo of Violet is just… *speechless*

  40. chiara

    Dear dear Ezra, we all love you and your family so much. Sending you prayers and thaughts and love from Firenze.

  41. CB

    Believe it or not, you have a small fan club in Cape Town, South Africa. My friend runs a bike shop and having shown off your beautiful work in there previously, most times I’m in there I give them a brief update. Keep creating and sharing it with the world, it’s a better place for it.

  42. Green Monkey

    Hi Ezra, thanks for keeping it authentic. Your pain seems so unfair. I follow you with hands over my eyes, fingers spread just a hair. I am at the beginning. I want to know and yet I’m afraid to ask. Since my advanced recital cancer diagnosis in May of this year, I have behind me internal high dose radiation and my LAR open surgery. Chemo is next. I hate this fucking bag. I don’t know how you make it sexy but you do. I spent the day in the emergency room. My wound opened up and started leaking what I thought was last nights greasy Chinese food. Turns our it was only seroma fluid but to determine that they had to open me up more – thank fucking dog for dilautid. After a bag full of IV fluids I’m home. I hate what’s left of me.

  43. jess

    Not a lousy posy. At all. Once again, I am completely bewildered by your frankness, your openness, your humility and I feel so grateful for the words you give all of us, no matter what they are. Keeping you and yours in my heart.

  44. Jenny A

    I feared there may have been something wrong. Please ignore my last email.

    I’m gutted to hear you’ve had such an awful few days. Stay as strong as you want to Ez, be a bit patient with yourself to readjust to your medication changes. We clearly all love you on there, so don’t apologise.

    And I have no doubt that Hill knows and understands everything.

    x

  45. bob

    ezra,your grace,dignity and courage continue to astound us………….thanks SO MUCH for continuing to share your energy and emotions with us……….blessings to you,hill,putney and your family………bob

  46. Joan Zimmermann

    Hi Ezra,
    I could write volumes about narcotics and their effects on the alimentary canal, given my experience with my husband, trying to stay on top of his cancer pain. I have considered entitling my memoir: Rivers of Shit: A Love Story. Your particular situation magnifies the problem to a much greater degree than most.

    Pain is an unforgiving bastard and you must never give it a chance to to stay around. For someone like you, the decibels of pain can get very loud before you actually hear the noise. Don’t beat yourself up for adjusting to powerful medications, or doing what you need to do to endure what you must. As for “disgusting,” there is nothing I have read/seen on your blog that can be described as such. It is only disgusting that you are having to go through this ordeal.

    All my best to you,
    Joan

  47. Paul

    Ezra: thanks for the update. Your communication is impactful as always. You are in my heart for sure.

  48. Christine

    I came across your blog and photos earlier this year via a friend on Facebook that shared the link. I’ve since read all your postings from the start of this. All I can say is that your strength is incredible, your words powerful, and your talent unlimited. You are an inspiration to so many people and have touched so many people near and far. I wish for you comfort and peace surrounded by love.

  49. Clarissa Thorne

    Every “lousy” [Amazing! Brave!] word you write is so very precious to all of us who are thinking of you every day. Every day.

  50. John Davis

    Ezra:

    To a man that I have never met, but admired (from afar) your talents of frame-building and photography. Your Greatness as a human being is felt through your candor, dignity and humility thru your writings about dealing with your battle. I have learned so much from you and you have been an incredible influence on me – for that, I thank you.

    My thoughts and prayers are with you.

    With Peace – JD

  51. Jaye Lucia

    That is a pretty damn good post. I think you pär’lēd yourself very well.

  52. Julia

    I’m reading your blog and follow your story and photos since a while, but could somehow never find adequate words to write a comment. I’m impressed by you, your unbelievable strength, wisdom and warmth. I think aRobin2 described best what i’m thinking!

    Love, peace and warmth from Australia

  53. eli koral

    goddamnit, this is all too familiar. i had a shattered left leg (bike vs car) about 6 years past and essentially had my entire lower leg rebuilt. the troubles i had with pain meds were arguably worse than the injury itself. the constipation and the impaction, and the hemorrhoids and the resulting barrage of medications to counteract the medications. oh and the suppositories. good god. i must say, you may have an advantage on this one, lacking an asshole. (i kid)

    you’re incredible and a complete inspiration to me.

    thank you for living.

  54. Lynn

    Ezra, I kept saying to myself, please let there be no blockage, over and over and over as that was the final straw for my brother. I hurt for you and your family and find it incredible you are able to articulate so well. As others have said, think of you first then your family. In the final moments, you and they are all that matter. I pray for another respite from the torment for you. We all wish we could share the pain to ease your load. Know that you (yes, you Ezra!) have changed all of us who follow you. We are better for it. Thank you. Biggest of love from the GPNW.

  55. Julia

    I’m reading your blog and follow your story and photos since a while, but could somehow never find adequate words to write a comment. I’m impressed by you, your unbelievable strength, wisdom and warmth. I think aRobin2 described best what i’m thinking!

    Love, peace and warmth from Australia

  56. Yme

    So for a lousy post from a guy who feels like s*** there is some really raw honesty for us to ponder. Nothing lousy about that and I’m amazed that you share so freely and graciously; thank you.

    Ezra you are a creative force so marshal your energies. Focus on dealing with the pain first, then Hill and family! Drop the “bloody run of pill flask” if it detracts from the important things.

    Here’s hoping the pain is getting more controlled. Love to you and yours. Allez. Thanks for everything.

  57. richard

    you have nothing to apologize for; pain is a form of temporary insanity and we all know the insane are not accountable for their actions. i’m not sure what the point of so much pain is from an evolutionary standpoint but how one deals with what they suffer is purely a personal matter.

  58. Laurie

    As much as I want to assure you that there is no need to post every little detail of your experience, I’m so glad you feel okay about doing just that. Thank you, Ezra, for taking on this macabre journey with you. I hope you are benefiting from our voyeurism as much as we are benefiting from being able to ride along.

    Much love to you and your family. It’s a difficult thing to watch, and experience, and there’s really nothing anyone can say to make it better.

  59. Joe

    That was an impressive piece of writing.

  60. sue borst

    Ezra, you are SO brutally honest about yourself. Stop beating yourself up for a moment, stop thinking that you absolutely HAVE to be productive, let those around you help. Your manic behavior must be somewhat difficult for mere mortals. Here you are doing incredible stuff in the middle of dying. It’s almost more than any one person can do and again, you;re doing it while you are dying.
    Maybe you should sit back and enjoy Hill and Putney, go on SLOW rides thru the park. Share some together time, watch movies of yourselves, sift thru your pictures just for the memories.
    Your mania also sounds very like denial, even though you’re very up front about your mortality, it reeks of denial. You know you are not going to beat the disease but you’re trying like hell.
    This may not be good for you and those you love to connect in a meaningful way before you slip away. We want Hill to remember how wonderful you are, not how productive you can be before you fall off the earth.
    Please SLOW down, love Hill and the rest of your little family. Give them TIME.

  61. Elaine

    OMG! I feel so bad for you. What a terrible time you’re having. I can’t even imagine it. I hope you are able to control your pain and get some relief soon.

    Have you ever read The Gearson Method? They talk about coffee enemas. Yeah, a terrible topic I’m sure, but the book has a lot to offer in the way of healing. Maybe it would help alleviate some pain at least?

  62. Elaine

    Oh, as for keeping posts updated, only do that for yourself. We aren’t demanding that you do them. If it takes your mind off the pain that’s one thing, but don’t think we demand them. At least I hope no one is demanding them.

  63. Andrew

    Thanks for posting this Ezra. That must have been a rough go. Not only what you had to endure, but also posting a story about it. And it was well told, by the way. Damn some of that must have been miserable. Well, its what happened though, so there you go. Thanks for being authentic.

    If your creative mania strikes again I won’t complain. I literally took inspiration from your last blast of creative mayhem and applied it to my life in many small ways. When I was presented with a problem, I thought WWED? (what would Ezra do) Instead of taking a lazy way out I looked harder and found a solution that may have taken more work and struggle, but in the end was more fulfilling. Other times an idea would pop into my head and instead of just leaving it at that I thought, “Well hell, Ezra has cancer and is on all kinds of meds and he can do it, so damn it, so can I.” Next thing you know I was tinkering away.

    I’ll take the good and the bad. Just keep being yourself.

    Andrew

  64. Julia

    Yes. WWED has gone through my mind more than a few times these last months–the answer is always clear–he’d make it better, more, honest, beautiful, find the humor along with the poignant pieces and above all season whatever comes with big love. Thanks Ezra. Sending best to you and your sweet family.

  65. Natalia

    As other folks have said, not a lousy post at all: a genuine, unflinching one. Your last upload makes a different kind of sense now: the mantelful of meds and not being ready to talk about the time you’ve been having. And while I can’t begin to imagine the physical pain (because physical pain is so hard to imagine?), I can identify with the alienation you’re describing from your partner (as well as with the subjective opinion that the disharmony is entirely your fault). I hope the pains subside, the resentments lift and you find your momentum again (a gentle one). Fingers crossed for at least five good reasons, and a warm hug from Warszawa.

  66. Gerry

    Ezra – thanks for everything. I’ve said it before you helped me and Debi talk about difficult stuff. Maybe the time has come for you to stop posting and just live with the one you love.

    Hill – just love him, hug him, kiss him.

    Love Gerry

  67. Susan Atkinson

    The good, the bad, and the ugly mixed with drugs and reality. You are on such a heart-wrenching journey and I appreciate your honesty as you allow us to travel as far as we can with you. You, sir, in whatever state of mind and body you are in, are an amazing soul. You are also fortunate enough to be surrounded by people who love you no matter what. xoxoxo

  68. Regina

    Like everyone here, I admire and respect you. What Richard said is true: “pain is a form of temporary insanity”
    Best wishes to you and your loved ones.

  69. Lois

    Your ability to write your life is a gift. I am thankful that I found your blog so many months ago, you have taught me so much about living. I am [so far] a cancer survivor, kidney for me, but lost my eldest sister in 1996 to colon cancer. Two more sisters have survived breast cancer. I remember my eldest sister telling me she was tired of people not allowing her to talk about her illness. We were all too stupid to know, at that time, what to say or how to listen.

    She would have loved you.

    Hoping your mania returns again! With a few safe boundaries.

    L

  70. René van den Abeelen

    I can only hope you will have as much time in comfort as possible.
    Your posts should end up in a digital museum or something. They are very precious!
    All the best from the Netherlands!

  71. Andrea

    A few years ago, a friend died of MS, age 44, after living with relentless difficulty for far too long. A mutual friend recently said of her, “She was wonderful! She was like an angel!” to which I responded, “who the fuck wants to be an angel?!”
    This to say it’s your humanness that’s your perfection, “lousy” posts, bike rides, pain, love, and all.
    You inspire so many, but far better than that would be to be left alone by this disease to live your beautiful, human life. Thanks for letting us know how you are. Sending stranger love from Los Angeles.

  72. Christina

    This is anything but a lousy post. Think again. Telling this story tells me that the body has fight. Your body. My body. In general THE body. Argh! I want us all to be able to take that pain away for you. Share it between ourselves and make it manageable. Wouldn’t it be incredible if we could do that for each other? I’m glad Dana’s presence has some effect though. She’s found her calling. Strength, love and light to you from the west coast.

  73. kimsanders

    not a lousy post, just a realistic one. thank you for taking the time to update us…and as always, much love & strength to you. you are amazing xoxo

  74. Your Friends at CAPC

    Ezra -

    Thank you for sharing with all of us. Your story is a powerful and meaningful one for those living with serious illness, those caring for them, and those of us pushing to spread awareness for palliative care. You have been and continue to be a wonderful advocate, and your strength and candor are an inspiration to us all.

    We are thinking of you every step of the way…

    Love,
    Your Friends at CAPC

  75. florencia

    hi ezra, im so relieved that you’re still there, hang on. i don’t know you, but I really think of you as a friend as many of your readers do. please don’t give up and enjoy all the things that surround you. we are all here for you, in the distance, but right by your side. i’m sending all my love to you and hill, I hope all this energy that all of us send to you gets there. BIG love ez, hang in there

  76. Bridget

    There is no instruction manual for dying. We all just have to muddle through it in our own way. But for something that will happen to us all there is a lot of silence around the subject. I’ve been given a shorter than expected timeline also and your willingness to discuss your situation, your thoughts, your good, bad and ugly is a gift to us. Thank you.

  77. Doug H.

    “When despair for the world grows in me and I wake in the night at the least sound in fear of what my life and my children’s lives may be, I go and lie down where the wood drake rests in his beauty on the water, and the great heron feeds. I come into the peace of wild things who do not tax their lives with forethought of grief. I come into the presence of still water. And I feel above me the day-blind stars waiting with their light. For a time I rest in the grace of the world, and am free.”

    ~ Wendell Berry

  78. Chris28mm

    Keep swinging Ezra. Keep swinging.

  79. M. M.

    you’re doing such a good job, ezra.

  80. Hollie

    So much love, to you and Hill both. Been reading for AGES but never comment, because I’m some stupid weenie and thought you didn’t need to hear from a random stranger. But I’ve decided that was stupid weenie talk, and here we are.

    I pray for you every day, in very stoic Anglican fashion, and I look at the picture of Putney I bought from one of your sales, pushing herself up a sand dune, and I mentally wish that we can push you through time, keep you going. All of us, who don’t know you personally, but find so much to love in your voice and your photos. You are able to point to things, in a way that’s artful, and sweet, and makes me smile. Cheesy but true: you are special.

    Thank you, for sharing all of this, for keeping us posted. Peace and love, to you and your family. And the hospice nurses. And Putney.

  81. vplow

    sending you the best vibes Ezra- I’m so sorry for all the shit you’ve gotta handle. It’s a bad deal no two ways about it. Wishing you as much peace and comfort as can be had. hug hug…

    But too: here’s to all your loved ones at your side! You’re all doing amazing things under the absolute stupidest circumstances and I empathize deeply. I’m thinking of you all and sending my best supportive thoughts your way. You are all amazing!
    Yes. You ARE!

  82. kumi

    My fingers are crossed, Ezra!

  83. Clare

    Another Internet stranger sending her very best wishes to you and your family!

  84. arianna

    hey” fratello”…
    glad to ear something from you,even ,obviously,i hate to ear such tough news;as i live in italy,and my english is not so good,i’ve to search lousy on google translator..than, i can’t found that lousiness in your post.but,that’s only our point of view,bro,we can only imagine how lousy it could be all this shitty situation at your tired but incredibles clear eyes.keep runnig fast,hold on ,hug furry white ball and remember smiling to your wife,i can see her tired eyes from here.you are a true gladiator to us,and a rare kind of human being.since one month u r running here in italian’s riviera roads too…my lovely husband is a paraolimpic athlete,and he is carrying your name on his flag on his amazing hand bike,(yes!!!!another kind of bike!)bringing u up&down thru marvellous landscapes ,because you deserve that and more!!! love&hugz to you ,bro………arianna and mickeyblueeyes

  85. Becca

    Hi Ezra,
    I have been reading your awesome blog for several years. It has been a while since I checked in but here you are…still a freakin rock star. I know what you mean about the word “fighter”- I don’t find it very fitting but you put it in such a eloquent way. Wishing you good days ahead.
    Sending you and your family peace.
    From an internet friend :)

  86. Andrew

    I’ve been thinking about you and Hillary a lot lately and checked in to find this powerful post. You are huge for slogging through and recounting it all so thoroughly. Love to you, Hillary and Putney and stay strong brother. –Andrew

  87. Kyle

    Peter and I send our love to you and Hill, Ezra. The “right” words have escaped me for two days since reading your post, so I’ll just say that. Much love to you both.

  88. Richard

    Ezra, what to say that has not been said? Tonight we are heading to the forest to ride bikes, simple and pure. I will be thinking of you when I ride.

  89. Sara London

    Hey Fast Boy-remember why you started this blog in the first place-it’s for you not “us”. Peace and pain free healing from a cancer sister

  90. Linnea Duff

    Maybe a shitty post, but not a lousy one. My feeble attempt at a joke about what must have been a horrific experience. Remember dear Ezra, there is no guide book for what you are going through.

    I thought of you last night while reading a book entitled ‘The Complete Perfectionist’ about the poet Juan Ramón Jiménez. He was a compulsive writer, churning out not just poetry but aphorisms as well. You, my friend, are a perfectionist (said not as criticism but with the highest regard). And you’ve shaped your life, work and circumstance into high art. But, as you know, it takes a lot of revisions to get it right sometimes and we are all a work in progress. I thought you would like this quote from Señor Jimenez: “To work isn’t to do a lot in a hurry or, above all, many times; it is to make unique, very well made things.”

    Ezra, your life has been a unique, very well made thing; an inspiration to so many. Even the messy parts.

    love, Linnea

  91. SteveFl

    Ezra..keep the faith :-)

  92. marie

    Ezra,

    I am a friend of a friend, and have been reading your posts when I can. Thank you for sharing such an honest account. It brings us all back to reality, but at the same time it must feel unreal to you who are going through it. God bless you. I once read that courage is patience over time. I am praying for you.

    Hugs, strength, endurance, peace, and love,

    M

  93. Artamnesia

    “Ezra, your life has been a unique, very well made thing; an inspiration to so many. ”
    Beautifully said, Linnea.

    I’m thinking about you Ezra, and checking every day or so for anything you may have to share. But please don’t think that you owe us anything at all. You’ve already been so generous with your creativity and your candor. I only wish you a respite from pain and the knowledge that you are loved. BIG loved!

  94. Eli

    Sabía que algo te ocurría. Ahora sólo quiero que estés mejor. Para mí sigues siendo el mejor.

  95. Sadie

    The honesty, candor and unflinching narrative you’ve shared throughout your journey has been joyful, painful, heartbreaking, heartwarming, devastating, messy, inspiring and uplifting, but never lousy. Never, ever lousy. Your blog is one of the first things I look for each day, and you, a stranger, have become so familiar and dear. You are thought of, held up by good thoughts and wishes, sent hopeful energy and prayed for by this usually non-prayerful person across the country who has been watching and reading and finger-crossing over the months and years. Continued love to you, your amazing wife, and all the people who physically surround you.

  96. Tracey

    Been thinking of you often. Wondering. Praying. Just plane old hoping you are ok or as ok as you can be. Please know we are all there for you in prayers, thoughts, spirit or ever how you want to see it. Hugs to you and Hill.

  97. Diana

    Ezra, sending you and Hill love and comfort. Please know that you don’t always have to do your best, use your energy to just be Ezra; that is enough for all those who love you.

  98. kay

    hi.

    thanks for updating. it’s extremely kind and amazing and fills me with mountains of respect – for you, for hill, for your family and friends. nothing i can do but assure you there are a handful of us known to me who love you, worry over you and wish you the best available everything. that will never change.

    nothing you’ve written has ever struck me as disgusting. you have, incidentally, provided me with a somber/joyful vision of real life. it has had an effect on my thinking and outlook that will last whatever time i have. you touch so many people. you touch me. thank you from the bottom of my heart.

    sending love to you guys.

  99. john

    Hi Ezra,
    Just letting you know I’m thinking about you.

    Love you,
    John

  100. Jennifer Pimental

    Love to you and your family. Thinking of you every day.

  101. Linda

    Ezra, I am in awe. To take the pain and torture you are enduring and transmute it into high art is the utmost creative ability and courage I have ever seen. I hope what you are creating with your life gives you fierce joy. It’s like you have used it as a crucible to burn away everything else but the essence of life and you are throwing that into high relief for the rest of us. What excuse do the rest of us have, then, not to do our utmost with life? Selfishly, I am glad to see your post and know you are alive, that your light is still shining on this side of the veil, inspiring us. Thank you for the precious gifts. Love to you and your loved ones and grace. From Arlington, Virginia.

  102. judson

    with you brother

  103. Elizabeth

    Nothing but LOVE from North Carolina!

  104. Shelagh Delves-Broughton

    We ALL love you! None of us will be loved as you are. I hope knowing that will bring some peace.

    Glad to know you are busy working on the flasks today so am hoping the pain is a bit better for you this week.

  105. Elizabeth Aquino

    Listening and abiding, from way out in Los Angeles.

  106. christy kennedy

    Too much misery. I’m sorry. Sending love at you and yours. And wishing you more good days than bad.

  107. Lori

    I am a relatively new reader. I just want to say I am so very sorry you are having to go through this! Please know you and your family remain in my thoughts and prayers. Your strength and courage is an inspiration but please know you owe us nothing! I hope your “Hill” has a support system as well. Take care of each other and know people really do care! Lori

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