At home now

 

DSC_5393

 

“So then, it wasn’t just in my head?  There was a reason that I was in such pain?”

On thursday, the day after our twilight zone wee hour visit to the radiology unit, things went a good deal more smoothly.   I was greeted outside my room by a “transporter” with a gurney..  I asked if I could help her push it somewhere. It took her a second to get the joke. I’m not sure if she had realized right away that I was even the patient.  I climbed on dutifully and was wheeled down to that same room where at two o’clock that morning after waiting an hour with no explanations for the wait (they HAD woken us up at one o’clock saying to come down, that the were READY) I had turned to hill and said, “Let’s just stand up and walk out of here.  I know the way back.  I’ll bet you they don’t even notice.”  And they hadn’t, at least not for 15 minutes or so.  And this was impressive since we had been the only people there.  We’d had enough time to find our way back up to our room, brush our teeth, get re-connected to the IV drip, and crawl back into bed, when the guy working in reception down in radiology burst into our room and sputtered something like, “Where did you GO!!??”  I waited for the next question.  That one had sounded smarter in his head.

In the light of day, though, I was wheeled in and greeted by a short string of hospital higher ups who pressed my hand and apologized about the events of the night before.  Somehow everyone seemed to have heard the story.  I was in and out of there in 15 minutes flat.  A little later that day they had thrown in another forearm X-ray for good measure.

The entire staff of the palliative care unit was top notch.  None of them over sentimental, but all with a sort of bedside manner that after 5 years dealing with this disease I had simply begun to believe didn’t exist in modern medicine..  Just that strangely rare ability for natural human connection.  It was our N.P. Julia who came in Thursday evening to discuss results with us.

“Ok.  So.  Let’s start with the arm.”

Hill and I had both realized in that moment that the CT scan news wasn’t going to be good.  The arm, it turns out, had done a bit of healing since the week before.  It was showing some buildup of callous around the displacement that hadn’t been present in the X-ray taken directly after being man-handled by that nice lady the previous tuesday.  Draw whatever conclusions you care to.  The consensus seems to be that it is more or less on a path to healing at this point, and that if I wear a splint ALL THE TIME it will probably get there.  That the displacement isn’t going to cause any real problems.  Plating it MAY be a possibility. Pretty clear though, that whatever I do the clock more or less re-sets to day 1 on getting healed up enough to ride mountain bikes again.  Given the rate at which my level of fatigue has been increasing, it’s hard for me to imagine that 6 weeks from now I’ll have enough left in the tank to swing a leg over.  This is hard to swallow.

“And the CT scan?”  Julia’s eye’s got a bit misty.  “Not good, huh?”

“No.  I’m sorry..  It’s bad.  They found more tumors.”

They had only done a scan of my pelvis.  I’m new to this palliative care model.  It was only a week ago that I had my first meeting with a palliative care doc (and now this morning I’m having my first meeting with a member of my hospice care team..  things are moving fast).  It seems that it’s not really the M.O. of palliative care to go looking for tumors.  they had deliberated about whether or not to do a CT scan at all.  In the end I think that they had decided they would (partly) because I seemed to be in such good shape that they believed they’d find some other reason for this sudden onset of ramped up pain.  And also, perhaps, because from the moment I walked in I had demonstrated a certain level of curiosity about, and maybe understanding of, the issues at play.  During the initial interview while I was giving them my medical history, one of the docs interrupted me and said, “did you go to medical school?”  In the end, I guess they decided that even in the worse case scenario they weren’t going to discover anything that I wouldn’t want to know about.  They had figured me out pretty fast.

There is a large tumor at the site of the original primary.  There are several more smaller tumors, semi attached to that one, in the lower right portion of my pelvis.  There is evidence that local lymph nodes are involved.  All of this since a PETCT in November that showed no activity in the pelvis at all (much to the surprise of my doc at the time, who felt that the simplest explanation for phantom asshole “cancer” pain was a local recurrence and NOT the metastasis shown by the scan at the time).  In other words, things are moving quickly.  At least one of the tumors in my pelvis is showing necrosis at the center, which can be caused by growth so rapid that the body can’t generate blood supply to the tissue fast enough to keep it alive.

“So then, it wasn’t just in my head?  There was a reason that I was in such pain?”

“Anyone with THAT scan would be in excruciating pain..”

The dose of narcotics that they had me on in the hospital to manage the pain was roughly 6 times what I had been taking leading up to last tuesday when my pain suddenly spiked.  One of the docs suggested that this could well have been a straw that broke the camel’s back type scenario.  That perhaps I had been managing to live with an ever increasing level of pain for quite a while, and that suddenly one day it had just reached, by another small increment, a level where I could no longer cope with it.. and was suddenly FEELING the full brunt of it.  So that suddenly it felt like something on completely different scale.  Sadly, it seems that it’s pretty hard to un-ring that bell.  They have switched me to a fentanyl patch with dilaudid for break through pain both at doses that probably would have put me in coma 6 months ago.  Between the switch in medication and I guess just the emotional toll of my stay at the hospital, I’m left feeling pretty frail.  I hardly recognize myself.

“So.  Docs.  I know it’s a terrible question to have to answer.. and maybe a pretty difficult one, but just for the sake of planning..  logistics..  what sort of time do you suppose I’ve got left?”

“Weeks to months.”

 

 

163 Replies to “At home now”

  1. you don’t know me, but i know you. you’ve been in my heart for months. and will continue to be. there is nothing i can say that is helpful or smart, but know that your life has touched so many more than you can possibly imagine. and there are people you haven’t even dreamed existed who are thinking of you and sending love your way.

  2. Not the news anyone wants/wanted to hear. Now I must go wipe my tears away. Hugs coming your way, as well as Hillary & Putney.

  3. Oh, Ezra. What a beautiful self portrait. Even before reading your words, the photo told the whole story. I am in the Reno airport now waiting to fly back from Tahoe. I would love to tell you about yesterday’s ride. Thinking of you always!

  4. as I read this I can’t help but think what an unfair turn this story has taken in the last year and what a small bicycle related world it is that brought me this way several years ago. for the first, I cannot believe it and for the second, I am thankful. you deserve the best. mike

  5. Just broke my heart reading this post. I wish you and Hillary strength to get through and so much love to you both and to Putney.

  6. I’ve not been in your shoes, but I’ve been in Hillary’s. It is impossible to put all my thoughts into words. You’ve both been strong and wise throughout this experience, amazingly so. Keep holding hands, hugging and looking into each others eyes. Much love to both of you.

  7. Feeling for you Ezra. Also feeling very privileged that you are sharing this with us. Love to you and Hill.

  8. Thanks so much for taking your valuable time to share these experiences despite all that is going on. My wife and will continue to hold both you and Hillary in our hearts.

  9. Yes – privileged.
    Y’know, this site keeps crashing.
    I’ve been trying to wait for my heart to stop thudding in my ears to write something coherent, but that doesn’t seem to be happening.
    I had considered that your brain was perhaps adding to your pain. I had considered that you were simply feeling the pain exactly as it existed. It had never occurred to me that it was possible that your brain had constructed a firm firewall to keep the pain’s full impact away from you for as long as possible. That one had never occurred to me. The depth and wonder of your brain. I will never get over it.
    I have checked in on you literally every day for the past two years. I have spent long hours trying to unwind and understand things you wrote about so clearly. After all that, I really thought I had come to a solid understanding. So after all that, how is it possible you can still completely floor me like that.
    That is you.
    I still recognize you.
    All of my all of my love to all of you.

  10. No puedo parar de llorar… es que no puedo… de verdad. Quiero que todo esto sea una pesadilla, deseo que acabe, tiene que ser una pesadilla y pronto despertaremos y estaremos bien. Todo mi cariño, todo. Le pediré al Universo que esté con vosotros.

    I can not stop criyng … I can not … really. I want all this to be a nightmare, I want to finish, it has to be a nightmare and soon wake up and be fine. All my love, everything. I will ask the universe to be with you.

  11. Hi Ezra. Today I saw your video “The bike maker” and I’ve read your story and the courage you had in making all public. A strong embrace to you and your family…You’re great man!

  12. I recently saw the Made by Hand film and can’t believe how much your story is moving me. The combination of personality, wit, strength, depth, skills, and charisma are out of this world. I tip all hats ever made to you. All the best in these awfully difficult times.

  13. Hard to find the right words. Been reading since I happened upon your blog several years ago. Your writing, the videos you make, the photos you take, all made me continue reading/watching. I’m sad for you and I’m sad for Hill. Wish there was something I could do that would make a difference. Thinking of you both.

  14. Long-time reader, first-time poster…I will say that despite this heartbreaking news, you are wholly recognizable as Ezra from out here. Sending stranger love from Los Angeles.

  15. Love, light and comfort to you and your loved ones, from a Flickr ‘friend’. I just ordered a bike for myself…it’s been YEARS since I’ve ridden! Your beautiful bikes, your beautiful photographs and your beautiful spirit all contributed to my purchase. Thank you!

  16. Tearful and heartfelt love to you and Hill. I wish words and thoughts could help but all I can think of to say feels impotent. You make an impact that is massive and there won’t be many moments when you aren’t in my thoughts. It’s clear that you have a lot of folks propping you up any way they know how. The love being sent your way is as real as the sadness and heart-hurt hearing this news.

  17. Weeks to months. Crap. Reading that was a punch to the gut, Ezra. I can’t even conceive of what it’s like to live it. For you, for Hill, for your family and close friends. I don’t know if the love and good wishes of a stranger will help at all but on the off chance it does, I’m throwing all that out into the universe with your name on it. Thinking of you.

    Much love,
    ~Sarah

  18. Noble and clear account. Your acceptance of and ability to stay in the present is profound. You and Hill are in my thoughts and heart.

  19. I’m sorry to hear weeks or months. I’m actually having a bit of a moment here, though I can’t say I’m surprised, and even though we’ve never met. You’ve made me remember the inner strength some people can wield in impossible circumstances. Your candid storytelling may give comfort and inspiration to others also dancing with relentless monsters, whether or not they possess your grace, honesty, and will. Glad you’re home, and that your tired inner “puritan” is getting an appropriate assist from the candyman.

  20. Alrighty then, you’re on the water slide and we’re right there with you and your incredibly beautiful family. I’m on this same journey, HOPING to make it 5 yrs with CRC. You have graced this planet with an intimate look into a rock star! whatever it took for you to put all these words up on these pages…THANK YOU. Also, thank you to your family for being willing to be seen as the beautiful, vulnerable, graceful people they are. IN all this, we realize that LOVE carries us in this lifetime. It shines with every post of yours and the followers. Being human has it’s highs and deep, deep sorrows. You’re rock and roll style is what I relate to as I go through similar medical machinations. You’re an artist and for as long as you have it to give…in whatever way you can give it, you’ll be gracing us with you’re beauty. We’re all hanging on for you and hanging in with your beautiful porcelain-bodied goddesses. Your love is bigger than the universe.
    http://www.metrolyrics.com/keep-me-in-your-heart-lyrics-warren-zevon.html

  21. I cant begin to imagine how this moment was for you, I have been on the other side with my Dad and that was hard enough! Just want you to know of my admiration for you, for your strength, your talents and your wonderful character.
    Big Love to you and Hill xxxxxx

  22. I saw the handmade video today and spent some time on your Flickr page and here.
    I am so sorry to hear about the pain you are suffering.
    My prayers are with you and your family.
    Take care.
    Tim

  23. I’m a your bicycle fan, and I discover that youre not a framebuilder, but a teacher of life.. thanks for all… I don’t know you but i’m never be so close to a person, like this way. really… thanks for your fight… thanks for your teaching… So close and so far… from italy
    D

  24. I want to say it again. I hope that you realize in sharing the intimate details of your life, that you are causing a world of people to hug their loved ones a little closer, to be kinder to those we encounter while standing in line, to appreciate hearing the birds/seeing the sunset/drinking a glass of wine, etc. (in general just savoring each moment of life). I wish we all collectively could lessen your pain. Know that you are loved.

  25. Have been following you for a long time. Came for the bikes, staid for the cancer. Your honesty helped me and Debi talk about difficult stuff. Debi died in February. Four and a half years of dealing with cancer – it won. Tell each other

  26. pressed the button too early..tell each other that you are loved. Hold each other.
    Thank you for what you have done. Love Gerry

  27. Oh Ezra, please know we all hope the best for you. I will pray for you even though I’m not religious, pero algunas veces hay que sabe pedir al poderoso universo. Muchos besos amigo, ciclista y fotografo. Chao chao, pp

  28. Ezra — We don’t know each other, but I’ve read your blog for a while. Your story has touched me deeply. When I ride my bike I think of you and the beautiful ones you have made. Hug your woman & your dog & your friends and try to enjoy whatever time you have. We all should do the same. Peace.

  29. Ezra your ability to face hard truths and stay in the present is an inspiration; I don’t understand how you do it, but thanks for giving us this intimate look we can learn from. As you burn through the days I wish for you strength, less pain, and all the love you deserve with Hillary. Thank you for sharing your journey. Allez

    Yme

  30. Gulp. I want to be as brave and full of grace as you are. I hope you know that you are inspiring. And really cool. And handsome. And nice. Good job, Ezra.

  31. Just… fuck.
    Holding you in the light, Ezra. I hope there’s some peace for you and Hill and Putney.

  32. I’m sorry to hear this news, it is just not fair. I’ll keep you in my thoughts and send good vibes your way. Take care Ezra.

  33. Hi, Ezra…
    I can’t even remember how I found your website, but I’m so glad I did. I read the entire thing in a few hours. I’m in awe of your strength and courage. This news is awful, but I thank you for being so open and honest – and funny – about things. You have truly touched my heart.

    Wishing you, Hill, and Putney all the best from Texas.

    Kat

  34. I’m so sorry! It’s not fair!! Pinche cancer!
    May all the light and love and good vibes of the world cover you and your loved ones.

  35. Ezra, you are a joy and brilliant light to all who are lucky enough to cross your path. Your passionate spirit and courageous grace to embrace truth are truly inspiring to me….my friends and I drool over your beautiful culinary fast films (and envy your knife skills!) and you, Hill & Putney seem rarely far from any Glen song I hear….and the words you share on these pages gave me strength over the last few years to help make my mom’s healing from a massive bleeding stroke into an adventure for both of us and continues to see me thru my dad’s journey with stage 4 cancer…so grateful that you are who you are and much love to all ya’ll from Texas xxoxoxx

  36. Om. Sending all the love in the universe to you & your family. Thank you forever for your thoughts and words. My world is different because of you.

  37. Regardless, you are important here even if the rest of the Internet hasn’t yet caught up.

    Ezra, you’re fantastic.

  38. Dear Ezra, you are in the hearts of so many people and always will be, more people [as Mandi said above] than you can possibly imagine. All of us are keeping you and Hill in our thoughts and sending you so much love. Thank you for everything.

  39. I keep going back to the title of your previous post … “getting out of here soon” and it feels a bit to me like you were trying out the idea of that; that you knew already at some level … and so I’m glad you’re “at home now,” Ezra. Home is a good place to be … Which doesn’t at all keep my heart from breaking, not only for you and for those standing right there with you, but for all these people commenting here who you’ve touched in some way and who know there’s just no fucking way they’ll ever be able to fill the Ezra-shaped hole in their heart without you being there to help.

    As sad as that is, though, the more important thing is that it’s also the measure of a life well lived … thank you for sharing so much of it with us. I don’t know what the best thing for you is going forward now, but whatever it is, that’s what I’m hoping for you.

  40. words can’t say how your words and images and story has touched me- touched us all. you inspire me to live and love big, with courage and grace- as you continue to do. well done. love and prayers and thanks to you and hill. xo.

  41. Wow, this one was a tough one to read. I’m so very sorry about the bad news. You are a huge inspiration and I’m amazed by your strength….Sending love to you and your loved ones.

  42. I can’t find the right words.
    I can’t imagine how actually you are feeling.
    You are so brave.
    Hope you can find your comfort.
    My thought with you.

  43. I got a link to the Made by Hand film from a friend and then started reading your blog and looking at the photos on your Flickr stream. As others have said, you don’t know me but I feel that I have got to know you (a little) over the last couple of weeks. My thoughts go out to you, your family and friends. Jon; Leeds, England.

  44. Love. Just love. You are surrounded by it. You teach us by it. And you will leave us with it. You are living many lives in this one, short as it may be. I admire your persistence. You’ll know when it is time to rest. Love and gentle hugs sweetie.

  45. One thing that has shone through your posts – both when you’ve been sick and when you’ve been well – is how dignified a guy you are, Ezra. I wish that we were friends in ‘real life’. That’s about the best compliment I can give you. I hope that you enjoy whatever time you have left. Hate that I’m even typing those words, but thank you for sharing your story with us. Know that it has touched so many people and given them a new perspective on their own lives. Peace. x

  46. This sucks. I’m so sorry. I’m another person out in the ether who you don’t know but who has been touched and inspired by your writing and your photos. I’ve been reading your blog and looking at your photos on Flickr for years. Your work is full of beauty, honesty and humor and has resonated well beyond the computer screen. It has served as a call to do better, to live better. This will stay with me always. Thank you.

  47. Dear Ezra,
    I just want to tell you thank you for sharing your life, for being so generous. The way you live is an inspiration for many people. Observing your images and words helped me a lot to face a situation. You made this world a much better place. Thank you. All my love.

  48. I am so very, very sorry for you.
    We all know ‘fair’ has nothing to do with what life deals us, but no… why, why, why?
    I can only hope you can spend some great time together.
    And the way you write about it all, amazes my time after time.
    Love from the Netherlands!

  49. One more person here who has been immensely affected by your courage and thinks of you often. Wishing the news were different, and wishing you and your family love and strength in the coming weeks and months.

  50. It’s just not fair. Then again, what the hell does fairness have to do with it? You are in my prayers every single day.

  51. Hi Ezra… Thank you for sharing your story. I’ve only recently been introduced to your site but hope to read all of your posts soon. I have read quite a few and I admire your honesty and your approach to life and your medical situation. As well as your photography.

    I was also diagnosed with cancer in 2008 (colon) and am also from Vermont. On June 14th I will be on the start line of the Tour Divide (mtn. bike race from Banff, Alberta to Antelope Wells, NM) and am using the ride to raise money for the Vermont Cancer Center.

    I will be thinking of you on the ride and please know that you will be inspiring me to ride as long/hard/fast as I can. And inspiring me to raise as much money as possible.

    Feel free to e-mail me (jeffmullen@gmavt.net if you’d like to read more about the race/ride). I would be happy to send the link to the “Face Place” page that I was encouraged to set up for the ride.

    Best wishes…

    Jeff
    Richmond, VT

  52. I forget now how I happened to come to this blog, but I am another person who lives miles away who checks in every day. To hear your thoughts, to hear that you might be home, to hear you might be out on a bike ride, to hear that you’re here.

    I cannot be more eloquent than others have been; I certainly don’t think that I can be even half as eloquent as you have been in what, to me, are unimaginable circumstances – and eloquence aside – nor do I think I could be as honest, as vulnerable, as forthright, as steadfast in my own self as you have been and continue to be.

    Sometimes, I look at my own dog George upside down and backwards about to fall off the couch and I notice how his brown fur melts at a distance into the brown of the couch, and I think of Putney on her white sheets, and of Hillary, and of you.

    I hope – and resolve – every day to take just some fraction of the honesty, the presence in the moment, the dedication, sense of fun, of absolutely perfect and raw humanity that you have shown me, and to give that out into the world, to “pay it forward.” Everyone deserves just even a small piece of what you bring to the world in full, even to those you’ve never met. That’s awesome, in the truest sense of the word – and breathtaking, really.

    And when I get out on my bike, and ride through the city first thing in the morning as it’s just waking up, eastbound on Independence avenue, open lanes and the sun starting to rise – I think of you, and all that you bring, and again resolve to be that much more present in the moment. The head badge on your frames is perfect, really.

    From miles away, thank you.

    And words never capture thoughts fully it seems, but they are a place to start: love to you, to Hill, and to Putney.

    My thoughts, and my heart,
    S

  53. Ezra. The world is a better place for your talents and grace. And. Goddamn it. I just lost a friend to this goddamn disease on Sunday. FUCK CANCER.

    I knew you — too briefly — as the best dance teacher I ever had, and now “know” you as a wonderful photographer and writer. Sending you all the good thoughts, and will gladly absorb any anger you may have in your stead, so you can spend your days in the peace you have earned. Love to your family, from mine, in Maine.

  54. i’ve never met you but your words and photos have touched me deeply. sending love from ohio to you all.

  55. Hi Ez. I haven’t commented in a long time but I just wanted you to know that I have been following along and thinking about you a lot. I’m sorry this is going this way. It makes me want to punch a fucking wall – so I can imagine it makes you want to bulldoze every fucking wall in history. But I’m also, as always, so very inspired by you. You may be getting a lot less time but you are still living so fully. You help me remember that my time is limited, too, and, like you, I’d better get out there and suck the marrow out of it. Thank you again for sharing yourself. Big hugs to you and Hill.

  56. Ezra –
    We have never met in person. We have only, on brief occasion, exchanged comments on Flickr. However since 2006, I have kept up with your bike building, your photos of food, your travels and your cancer. It’s voyeuristic at its worst, but at its best I feel blessed to have had a glimpse into your life. You have inspired me to build my own road frame and you have made me a better photographer. I take pictures of the small details in my life to remind me of how precious life really is. Cancer is a motherfucker, to say the least. No doubt about it. Be strong. Keep fighting. And know that all across this planet you have made a difference in people’s lives. Cheers to you.

  57. Ezra,

    Long time reader. I’ve talked about you to my friends and family like I have known you for years. You are an incredible person who deserves more time on this earth. I wish I could zap it out of you. My thoughts are with you, Hill and your family & of course Putney.

    We do need more people like you.

    All my love,
    Will

  58. A Dog’s Purpose? (from a 6-year-old). I don’t usually forward emails, but this one is so truthful.

    Being a veterinarian, I had been called to examine a ten-year-old Irish Wolfhound named Belker. The dog’s owners, Ron, his wife Lisa, and their little boy Shane, were all very attached to Belker, and they were hoping for a miracle.I examined Belker and found he was dying of cancer. I told the family we couldn’t do anything for Belker, and offered to perform the euthanasia procedure for the old dog in their home. As we made arrangements, Ron and Lisa told me they thought it would be good for six-year-old Shane to observe the procedure. They felt as though Shane might learn something from the experience.The next day, I felt the familiar catch in my throat as Belker’s family surrounded him. Shane seemed so calm, petting the old dog for the last time, that I wondered if he understood what was going on. Within a few minutes, Belker slipped peacefully away.The little boy seemed to accept Belker’s transition without any difficulty or confusion. We sat together for a while after Belker’s Death, wondering aloud about the sad fact that animal lives are shorter than human lives. Shane, who had been listening quietly, piped up,
    ”I know why.”
    Startled, we all turned to him. What came out of his mouth next stunned me. I’d never heard a more comforting explanation. It has changed the way I try and live. He said, ”People are born so that they can learn how to live a good life — like loving everybody all the time and being nice, right?” The Six-year-old continued,”Well, dogs already know how to do that, so they don’t have to stay as long.”

    Live simply.Love generously.Care deeply.Speak kindly.Remember, if a dog was the teacher you would learn things like: When loved ones come home, always run to greet them. Never pass up the opportunity to go for a joyride. Allow the experience of fresh air and the wind in your face to be pure Ecstasy. Take naps. Stretch before rising. Run, romp, and play daily. Thrive on attention and let people touch you. Avoid biting when a simple growl will do. On warm days, stop to lie on your back on the grass. On hot days, drink lots of water and lie under a shady tree. When you’re happy, dance around and wag your entire body. Delight in the simple joy of a long walk. Be loyal. Never pretend to be something you’re not. If what you want lies buried, dig until you find it. When someone is having a bad day, be silent, sit close by, and nuzzle them gently.

    You must have had a great dog teacher as by looking through the open window you provided I have seen all of the above posted by you……OFTEN!

  59. Hi Ezra,
    Thanks for writing this.

    Recently the song Black Peter by The Grateful Dead has been playing over and over in my headphones and in my mind. This lyric is so true about how everything we do in this life leads to the same conclusion:

    See here how everything
    Leads up to this day
    And it’s just like any other day
    That’s ever been
    Sun going up and then
    The sun going down
    Shine through my window
    And my friends they come around
    Come around, come around

    Love you, man.

    Peter (a friend who wishes he could come around and see you)

  60. Hi Ezra. Just met you from watching your video. Loved it (and this site).

    I am about to do something that will probably irritate you. You will probably think “What the fuck is she doing”….but I’m going to do it anyway.

    Yes, I am going to pray for you (my new friend).

    Dear Father of all Creation: I would like to talk with you about my new friend, Ezra. Your Word says that we can come to you about anything, and today I choose to come to you concerning Ezra. It can be very hard to believe that You exist when we have to witness kind people like Ezra go through so much pain. But I still choose to believe in you. I believe that you created Ezra. I do not believe in coincidences, so neither do I believe that Ezra was created without purpose.

    And regardless of Ezra’s personal believes, I pray that you will comfort him now until all eternity. Give him a never-ending peace.

    I do not want Ezra to die. I desire Ezra to will live a long life. Father, I pray that You will destroy every life-sucking cancerous cell in Ezra’s body. I don’t care what the Dr.’s say….they are human, but You are God, the Creator of all things. You gave him life.

    This is what I pray for today: that Ezra will live a long life. I will not be bitter if this is not Your will…I will not understand, but neither will I be bitter.

    In Jesus’ name, I pray. Amen.

    ****If anyone else reads this prayer and agrees, then post an “AMEN” below****

  61. I’m deep in the trenches of writing my PhD thesis on metastatic cancer so believe me when I say you have taught me more about this disease than any of the science. My thesis will be dedicated to you, a person I only met once but who has touched my life profoundly.

  62. Dear Ezra,
    The first time I met you was some twenty years ago. You turned up at our house in Bath in lycra, carrying all of your belongings in the saddle bags of your super light road bike. I can’t quite remember if you had cycled from Ireland or France, but whatever the country, you had travelled for many miles. I was struck by your nonchalance and breezy attitude to this feat, which to me at 16 years of age seemed like a towering achievement.
    Many years passed and in spite of not knowing you since that time I often felt a connection, sustained largely through our moms correspondence. You pursued dance, I drama. You have a passion for cooking and photography, as do I.
    It has been a beautiful and painful experience to get to know you from afar via your blog. An excruciating inspiration. And also to recognise the extraordinary friends you have collected around you, which I believe to be the measure of a man.
    I had the opportunity to visit you and Hillary at your brownstone last year and witness a snap shot of your life. I recall how tired you were that day as I think you were recovering from another bout of chemo. But my lasting impression of my visit was your intelligence, charm and razor sharp wit.
    What was also evident, was the tenderness, openness and ease shown by everyone dropping in to say high. That natural human connection you so eloquently speak of. A connection for which, I am in no doubt you are responsible.
    Ezra, we are thinking of you and Hillary and of course your inner circle of family and friends at this time.

    Peace, Strength, but most of all Love

    Andrew ( Gael, Matilda and Arthur )

  63. It’s hard to find the right words, I’m stranger, parttaking in your story only by starig at a computer screen a continent away from you.. but maybe these are the right words: You taught me how to do an Aztec Soup, a dish that I since have served to my brother, his fiance, my family and even the wife I love. You touched me, you touched them, you moved me, you moved them, I just wanted to say, thank you, or to do it in my mother tongue: Dankeschön.

  64. What shitty news. I hope there is something you still really enjoy to do that doesn’t sap all your energy (like eating or snuggling or watching movies or drinking a lot) that you can do to ease your mind. I can’t imagine how hard it must be tot ake this all in. Thinking of you all.

  65. Please don’t ever underestimate what you have accomplished and what you will continue to accomplish no matter the outcome. You live life as an artist/craftsman. You lead by example. You make us better by by knowing of you.
    With love prayer.
    Steve

  66. I can feel my heart being ripped out of my body. You are ever present in our daily prayers.

    Love,

    j, r, s & z

  67. It is as if adversity has burnished you and revealed (not created, just revealed) increasing levels of depth and beauty and courage. But I wish, desperately and mournfully, that you were perfectly well as no amount of luster begins to equal a teaspoon of this suffering.

    You are a gifted writer. Thanks for opening this door for your readers. You have lit a candle instead of cursing the darkness.

  68. Ezra,

    I have been following your story for some time now. Watched the Hand Made video with the family – wanted my girls to see and hear you, let them know the water is much deeper than they realize. I wanted to comment, wanted to let you know there were four more people out here thinking about you – hoping, but the right words never came. I realize today that there are no right words. From the comments I have read today and in past days, weeks and months, I know there are many, many people who you have affected with your honesty and courage. I also know that anyone who can call you friend is a very, very fortunate person indeed. I keep trying to figure out this life, so far, no luck and definitely no answers as to why. My only hope is that someday, in some place that is not here and where you are not sick, I can maybe go riding with you. My family and I send you and Hil our love

  69. Ezra, I’ve never met you but after reading your blog, and viewing your photos, your story has made an impact on my life. I’m sorry to read this terrible news.

  70. Dear Ezra, I am just meeting you and I so appreciate you sharing you. I’m at the beginning. I was diagnosed with t3 rectal cancer on May 20th. because I’m a monkey I have renamed it “wrecked-tail” cancer. I don’t know what to do. I just finished my 7th reconstruction surgery from breast cancer less than 30 days before my new diagnosis. I am struggling with quantity over quality. I want to travel now before I feel sick. I didn’t mean to make this post about me. I want to know more about you. time to settle in and read more. Love, light and healing (whatever that means) MOnkeyME

  71. Ezra – I am sad and angry and wish to hell I lived in the northeast so I could cook some food for you and H, walk your dog, and do anything else you guys might need.

    One thing I am sure a lot of your followers and friends would be interested in would be buying some of your photos. We would enjoy having them and it would provide some financial support to you and H.

    IF you are comfortable with it, and if any of your friends can set something up online to allow us to do that, PLEASE don’t hesitate to put up a link here.

    Thank you for this blog, for allowing the Hand Made folks to make a film about you, for the beautiful pictures and videos you have shared on Flickr, and for the life lessons you have taught me through your blog.

  72. Ezra, I only started following you a short while ago after the short movie about how you make bikes, but I wanted to tell you that I so very much appreciate your willingness to put all this out there for everyone to read. It’s an amazing thing to share, and I’m so sorry for what you’re going through right now. I hope you can keep the pain under control and that you get to still do at least some of what you love to do.

    Thank you again.

  73. Hey, Ezra (and Hillary)!

    I found your blog through a cycling site a while back, and got hooked on your writing and photography. I have a degenerative neurological condition that won’t kill me, but will progress. No way to predict how quickly, or when, or how severely. The grace you’ve exhibited under the toughest of circumstances the last year has really given me more courage in my own situation. Send my gratitude, and every good thought I can muster for you and your family.

  74. Your words are among the most humbling I have ever read. I never thought a bike blog would lead me here. I will ride and run and work and tomorrow with you in mind, and hopefully with some small fraction of your courage and dignity.

  75. Ez thoughts and Prayers and love to you and Hilary. You were one of my first Flickr buddies. Funny how many years and pictures have passed. Hope we meet one day share a bottle and a game of pool. I will cook dinner nothing like what you can do. But I will try.

  76. Much love and respect, from someone who has been quietly following your photos on flickr and battles with this miserable illness for years…

  77. Your self-portrait evokes it all: the words you’ve written and the comments you’ve received. Beautiful.

    Your life has been an inspiration to me since before you had cancer, and I have followed along over the years, relieved and energized when you were all dinners and bikes, sad and bewildered when it was pain and hospitals.

    In the weeks since flickr changed and you posted your fare-thee-well over there, I have revisited many of your posts, entering a deeply reflective state that consists of grief and sadness and wonder and gratitude.

    I’m influenced by a lot of what you’ve shared—the craft, the whimsy, the beauty, the cowl fat, the private details, the astute metaphors.

    I am transfixed by this lesson in sharing one’s intimate life without crossing that line into sharing too much; apparently the relationship between dignity and openness isn’t a one-or-the-other kind of thing; the trick, it seems, lies in being honest and sharing for the right reasons, the way you do.

    I am relieved and grateful for being more ready, thanks to you, to face adversity in general, and terminal disease (whether my own or a loved one’s) more specifically. The latter will probably come, in one form or another, eventually, and I will have your chronicle and your insight to help guide me.

    If there is anything I can do for you and your loved ones (help edit the manuscript for a memoir based on the writings on this site?) in the weeks or months or years to come, it would be a privilege to contribute to your legacy.

    “Black” by Bonnie Prince Billy has been playing often in my mind. It captures well the sentiment you chose to favor over the adversarial narrative shortly after you got the stage IV diagnosis. A beautiful melody for this sad, sad dance.

    Tonight my little son and I will be making your gnocchi for the first time.

    Hands clasped over yours and Hillary’s from Warszawa.

  78. Bless you Ezra and Hillary for bringing joy to me and so many. I offer this prayer for you in hopes that it brings comfort, knowing well how little words can mean in such times:

    In your arms I am safe; keep me and I have nothing to fear; give me up and I have nothing to hope for. If health and strength and success are mine in this world, keep me ever on my guard lest these great gifts carry me away from you. If pain and sorrow be in my path, give me the grace to bear it well. Give me steady aim to live in your glory, to set a good example in life and in death. And let me live in your light forever.

  79. I’ve been in denial over your story over the last couple of years, so haven’t written these thoughts. They aren’t much, just an admiration for the way you approach your days, dancing, biking, building, cooking, living. Please don’t ever change, thanks for the blogs and photography. McD Family, Ireland.

  80. my love to you and yours at this time of unwelcome, undesired transition. and yet, it comes. reading the comments above, it’s clear I am not the only friend who has never met you, watching, reading, hoping, praying. i am sure it is no consolation but i will try to be a better human because of you. more creative. more grateful. more alive. i wish so much i could wave a magic wand. instead i call upon all the grace in the universe to assist you and your family. your star shines so brightly, ezra….

  81. I have no words to adequately express my feelings. I have followed your blog and am so impressed by your honesty and courage in facing this challenge. You have provided such inspiration….. I had to comment just to let you know how deeply you touch people that you don’t even know…. You are well loved.

  82. It is hard to find the right words, but I want to say thank you for teaching me the depths of the human experience, about things so dark and scary I used to like to pretend they didn’t exist. You’ve brought living and dying into the light. Thank you for this gift. With love and gratitude, cd

  83. This is the first time I write something here, and anything that I can write will sound like a goodbye. I don’t want this to sound like a goodbye. So I will just say thank you for show up one night while I was looking for “bicycles” on flickr. Thank you for writing about that handsome and charming mad man and thank you for build the assless.
    Estamos con vos.
    Un abrazo.

  84. I am so, so sorry to hear about this latest shitty development. You don’t know me but I have been reading your blog on and off over the years. I love bicycles and had read where you and Hill had visited Nova Scotia which is where I live. If there is anything I can send you from Nova Scotia that would bring you even a second of joy, please let me know and I will do it. I live in Halifax so close to where you visit. I have so appreciated and admired your candour and honesty in documenting your both your aliveness and illness. Big love from the Maritimes. Sue

  85. You are amazing…you took time out of the weeks to months to write this message and share that beautiful self-portrait. There aren’t words in any language to thank you enough for what you have done with this blog and sharing your message. I will repay you the only way I can: in smiles, in laughter, in compassion and empathy toward others. Thank you, thank you, thank you.

  86. ezra. i honestly dont know what to say. you probably understand more about living than anyone else i know right now. much much much love from me.

  87. We are better for knowing you.
    Thank you Ezra.

    You will be missed.

    Love to you, Hill, and Putney Sue.

  88. I’ve been following your photostream, and now your blog, for several years now, and man. This news… I’ve been denying it, wishing for a miracle.

    I’m still wishing for your miracle, Ezra, even if it’s not the miracle I had in mind. I have so much love and admiration for you, and I am so grateful for the way you’ve shared your life with all the world.

    All my best to you, Hill, Putney, and all the other wonderful people who populate your life.

  89. I follow your blog from the other side of the world. As someone with metastatic cancer who didn’t know any other young person (21yrs) going through the same, your blog has been a cherished read. Thank you.

    Love and prayers.

  90. thank you for teaching me to be a better person……
    for yrs I also have been following….
    luving your videos, fotos, & intimate sharing of teaching cancer to cry.
    my heart has been so heavy these last couple mo’s ….
    praying that it would all magically turn itself around.
    life is so unfair….
    sending luv to you, Hill & beautiful Putney from AZ

  91. ezra, my life is forever changed by reading your words and seeing your pictures. every time i ride my bike your spirit is with me. much love to you, your wife and your pup. I wish you the most clear, beautiful, and pain-free days.

  92. Your beauty and strength as a person and the story you have shared with the world are an inspiration that will echo throughout time. Thank you and with all the others out there, peace and love.

  93. Ezra, I’ve discovered your work, and about you, few weeks ago, in the This is Made by Hand documentary. I love your bikes and cooking, you’re amazing! Love from SP, Brazil.

  94. CLASS ALL THE WAY!….so true. I think it was Richard at 8:55pm that said that I concur.

    Ezra….you are both classy and very gracious to have spent this time today, keeping us updated, with this most recent post.

    My heart breaks for Hillary, as no doubt does yours.

    I personally would love to hear from you every day. You are magical. The best do die young and you will be proof of that I am afraid.

    Spend your time with Hillary now……as much as we all wish to read your words daily, id rather know that you were spending all your time with her and the rest of your family……

    I will NEVER forget you!
    Its such an odd thing to say to someone whom you have never met but that is the reality of your power and magic combined……now share it amongst yourselves.
    When your time comes Ezra…….I wish you a wonderful journey, one at peace and without fear or regrets.

    Love you Ezra!!

  95. Ezra, I don’t think we’ve ever spoken on this here internet before but I’ve loosely followed you from beautiful fenders, to striking handlebars, to classic, elegant bicycles, and through these awful stages of cancer, remission, and relapse, not to mention stunning photography through all of it. I guess it’s just finally time to say “thank you” for years of flickr photos, blog posts, and providing the world with a little more beauty on two wheels. You are an inspiration to all of those around you (both physically and digitally), and I just hope that you, Hillary, Putney and all your family and friends realize the impact that one man (you), with a lot of passion and bravery, can make on this earth. Life is fleeting, but may your memory live on forever.

    -Tim

  96. Ezra, I’ve been reading your stuff for a long while. I have been inspired by your talent, wisdom, creativity, compassion and most of all…your Humanity. And for that I thank you.

  97. Isn’t there some sort of social media “Feck Off Ass Cancer” button I can click on this website to make the bastard go away?!?

    Again, much respect Sir, much respect.

  98. I guess this is the time to once again say thank you. I’ve been following you on Flickr for around seven years and have really come to know you through your artwork. Your beautiful photos really encouraged me to get into photography and it’s become a great outlet for me. Thank you for that.

    And thank you for so openly sharing your life and all the joy and sorrow that comes with our humanity. I’ve deeply appreciated all of the honest beauty you’ve portrayed with your camera and your keyboard, and I’ll very much miss this time we have together.

    May you have many more good days in whatever tiny and beautiful ways goodness can be present. You and your beautiful family have my love and respect.

  99. i read this right off the bat, but i wasn’t sure how to respond…my first thought being sadness, second, awe, third anger…at this horrid situation. you are a class act that’s for sure. i know you and hillary are accepting and serene in your decisions regarding this path you are on…I have a great deal of respect and love for you, and you do not know me in the slightest. i wish i could do something to help that would actually make a difference…as someone else stated in comments somewhere recently, if there is anything REAL we can do to help please let me/us know. i hate to feel so helpless. i felt like i was able to more fully appreciate your city when i visited NYC just recently. continue being strong & enjoying your life, you have so much beauty and love around you…hugs from Chicago..

  100. I sent you an email but just realized it will probably go in the t rash bc its a yahoo email.

    I just wanted to say rock on and im sending you vibes: )

  101. Oh gosh. My heart fell into the same whole as Job, when he said: “What I feared has come upon me.” Like so many others commenting here, I have wade in and swam thru your postings over the years, finding the current of your life and smiling at your eye for beauty that surrounds. You are a true poet with such a deep affection for life. Which is why this is so sad. We need beauty. And those who fan its flame. We have all been warmed by the fire you’ve kindled on the shores of life. I can only croak out a prayer that you are blessed, even in this moment. My heart holds fast to the God of Abraham, “who believed his God could raise the dead and speak into being things that didn’t exist.” So I must, with all sincerity ask that same God to give you life. Cancer is evil — part of a broken world reeling in sin… a world that was defeated on Calvary (Isaiah 25:7-9). So it is in the one and only name by which men can be saved, Jesus, I cry out for your healing. I also pray that you would seek him and be found by him, as he promises. And that the peace of God, which surpasses all understanding, would flood your heart and your mind. Ezra, you are too good to lose. May the seed of eternity which is in your heart — as it is in the heart of every man — respond in faith to everything I have said. Eventually, when we see God as he is, faith and hope will pass away, and only love will remain. See you there!

  102. Grab that bottle opener I made you, open a beer, pet your dog and squeeze your wife. I can’t say anything you haven’t heard but I wish you and yours the best

  103. I hope you don’t find it cheesy when a stranger tells you that you are a hero to them. If only others could live so clear and noble, so present and aware. I hold you and your beautiful wife in my heart.

  104. Ezra,

    Wishing you peace as you make this journey which we will all follow one day or another. Praying for you and your family.

    Much love,

    M

  105. though i’ve never met you, i will NEVER forget you!

    i think we all feel like that, really. so in essence, your story will never end. it will live on in your stories, in your photos, in your bikes, and in the hearts of those who knew you, and of those who didn’t

    i wish for you nothing but peace
    xx

  106. Ezra, I am a budding framebuilder. I first saw one of your bikes on CycleExif.com. Very nice craftsmanship. I watched The Bike Maker on Vimeo today and it’s inspired me to pick up my torch and get my business off the ground. Positive thoughts to you and your family.

    Peace,
    Paul

  107. I’ve been a long-time lurker, aside from a celebratory note at the end of your first treatment. I can’t match your eloquence, nor that of my fellow commentators. But I want to say thank you for all that you are sharing with us. Your heart and soul shine through each post and each photo and I very much appreciate your spirit and generosity.

    Elizabeth

  108. Ezra,

    I started following your blog a while ago after i came across one of your bikes on the net.
    Now i sit here on the couch and i am trying to hide the tears for my girlfriend who is sitting next to me. Dude, we never met… I am sorry for that.

    My thoughts are with you.
    Hug
    Sark

  109. You are still you, and you inspire me to be a better me.

    I am lucky to have crossed your path, albeit digitally.

    Thank you, Ezra.

    —Fred

  110. Much love, thoughts, and prayers (from someone that doesn’t pray. ever.) to you and Hill and Putney et al.

  111. I have been a silent follower of your flickr-stream. One day I lost track. Today I found the little film about you linked to a friends website. I always hoped that everything would work out for you just fine. And I am shocked that it simply doesn’t.
    Knowing your story makes me feel ashamed. All my pathetic self-pity makes me feel ashamed.
    Thank you for everything you are sharing with us!
    Love to you and your family!
    Gregor

  112. Ezra, you were just a few minutes away (on the express train, that is) and I never got to meet you. I am so sorry I didn’t. I followed you from the very start and although I knew the end was inevitable and it was near, I am still shocked that it actually happened. Your energy, your honesty and your creativity made it seem like you could conquer it all. But if life is about leaving the world better than you found it, your life was a colossal success. Thank you for all the beauty you created and the amazing love so palpable in everything you did.

    Hillary, I am so sorry. The last pictures of you in the ambulance were hard to look at. If this has been difficult for us, the strangers on the web, I cannot even imagine what it must be like for you and your family. I hope you are are surrounded by the love and the comfort you need now. We are all thinking of you.

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