Just to bring you up to speed!

 

 

DSC_9447

 

Several weeks ago I had a miserable period of three days of not being able to get out of bed.  The day before I had gone for a bike ride.  A rather easy bike ride in the scheme of things.  Coincidence, I felt nearly positive.  It had to be the flu or something like that.  A flu that had just happened to hit me the day after I went out riding.  It certainly FELT like the flu.  Achy joints, sore muscles, inability it stay awake.   Hill and I had plans to go to Vermont to catch the height of the fall, but my 3 days in bed were serious enough, that is to say that I became so totally useless that, the idea of planning a trip when we didn’t know how I’d be feeling seemed crazy.  To be away from hospice care, to be away from the comforts of our own home.  Not a great idea.

A week later I stepped out onto the stoop on the way down to the shop for the first time in a while, and there was something about the air..  it was crisp and cool.  It reminded me that it was fall..  It reminded me that I probably had just one last chance to see Vermont in the fall.  I was feeling fine!  So why not.  By then of course, Hill was up to her ears in meetings and couldn’t come with me.  She cleared me to go on my own, though, and I did.  A spontaneous run up to Vermont.  Just two nights.  Zoom.  Leaving town was a comedy of errors.  One missed train after another.  Finally settling for a rental car from Stamford at twice the price of the the rental from New Haven, simply to get on the road!!  And still, I didn’t make it to my brother’s place until it was time to make them some dinner, when my intention had been to arrive at around noon.  It wasn’t much of a visit.. just one full day there.. but enough to remember Vermont fall.  A favorite place and time of year for me for so many years.  While I was there I received an unexpected and beautiful piece of correspondence.  Encouraged undoubtedly by a mutual friend, and yet still wildly special.  I am very seldom star struck, but this stopped me in my tracks.

“For Ezra.

With Love,

Bill.”

At any rate.  That knocked me off my feet, and off to bed I went.
I hadn’t even taken a mountain bike with me to Vermont..  Somewhere in the back of my head I was a little gun shy about the notion of hopping back on a bike after ending up in bed for three days afterwards the last time.  Was still feeling fairly sure that it was a coincidence, but wasn’t eager to test it.  On the way back to the city the next day I checked in with Hill on the phone..  At some point in the conversation she said, “you want to go riding this weekend?”  I realized, first, that I had created a monster..  that she had the bug..  and second, that at some point, I was going to have to test this thing..  was going to have to PROVE that it had been a coincidence, and that riding was still going to be lots of fun for me this fall.

So Hill and I planned a little ride.  On Saturday we piled the bikes into the zippycar and went up to sprain ridge park.  Climbing onto the bike felt amazing.  I ALWAYS feel good when I climb on that thing.  Amazing.  Like it was made for me.  We had a wonderful fall ride.  Dry and crisp.  Hill rode very well.  Her second crack at sprain, and she was much less tentative.   Rolling right into and over things.  I was suitably impressed.  After about an hour and 15 we had worked our way back to the parking lot, and just to be on the careful side I called it a ride.   It had been mellow and slow.  I had never really exerted myself.  Nothing that my body could possibly complain about the next day.  We packed back in the car and got back to the city in plenty of time to return it.  The rest of the day was mellow and productive.  I cleaned the shop!  Made it immaculate.  The first step towards launching into whatever is to come next.  Ate dinner and went off to bed.

I woke up on Sunday morning, and low and behold!!!   FELT FINE!!!!!  NO PROBLEMO!!!   CURSE BROKEN!!   This was very good news, of course.  This meant that it had NOT been the riding before..  it HAD been some coincidental nonsense..  flu.. cancer.. something!  But not bike riding.  I was so excited.  Called my brother to let him know..  He’s nursing a torn up shoulder that’s going to keep him off a mountain bike until something is done about it, but he feigned some excitement for me.  Watched some football with Special Ed..  Cooked some dinner..  By the time I was done cooking, though, I realized that I was really pretty tired, and would sort of rather head off to bed, than stick around for the party to begin.

Wouldn’t I like a bowl of my stew before I left?

No thank you, I wasn’t really all that hungry..  just wanted  to get a nice early night, and tackle a few things in the shop the next day.

So off I went.  Got to bed nice and early.

Monday morning, Hill brought me coffee in bed.  It was about 8:30.  It took me a moment to sit up.. my body was aching a bit.  I got propped up though and opened my laptop.  Flipped to email.  And then dozed off while I pretended to drink coffee and read..  My head nodding.. finally giving in, but masterfully not spilling my coffee..

“Baby?”

“Yeah?”

“You look like maybe you’re sleeping”

“hmm..  yeah”

“Maybe you should put your coffee down and just go back to bed for a while.”

I tried getting through another email or two, but it was impossible.  Heavy eyelids winning.  So I put down my coffee.  Put down the lap top.  Snuggled back into the covers, and went back to sleep for a little while.  When I woke up it was 2 in the afternoon!!  I wasn’t done yet, though..   I found some sort of movie to watch, but mostly slept through it.  When it was done I allowed myself to fall well and truly back to sleep.  When I woke up it was dark..  Hill was sitting across the room (she had been gone at a meeting when I went to sleep), in a little pool of light working at her computer.  I had no idea what time or day it was.  Complete disorientation.  “It’s 8 o’clock baby, would you like to think about some dinner?”  Holy SHIT!  How had an entire day gone by!?  We ate some food and went back to bed.  I didn’t wake up the next day until 10:00.

Anyway.  The short version is that I ended up spending my three days in bed just like before.  I just had a day of feeling fine first.  It’s a little strange, but I’m afraid that the exertion of riding IS the culprit.  Hard to believe..   (although, not hard for my hospice nurse to believe.. “You’re VERY sick, Ezra.  I know that’s easy to forget because you’re so busy and active, but it’s the truth! It isn’t a surprise to ME that you go out on a crazy hard mountain bike ride and it tires your body out.”   “But it wasn’t a crazy hard mountain bike ride.. it was eeeaaasyy.”   “Not for a normal person it wouldn’t be..  And not for a very sick YOU it isn’t..” )  Oh.  Ok.  So that’s how it’s going to be.

This leaves me pretty depressed.  Still in disbelief a little.  Could it be a coincidence both times?  I mean, if it was a coincidence this time, what was the culprit?  Another flu?  Why the day off in between?  Why does it feel so GOOD to be on the bike if it’s wearing me out as much as it proves to be?  A lot of it doesn’t makes sense to me (unless I remember that I’ve already outlived some expectations by 5 months or so!), but I’m definitely not jumping at the opportunity to test it again.  I mean, maybe eventually…  Clear out a few days, expect to be bedridden, and go for a ride.  Three’s the charm, right?

Sorry.  This has been a pretty long winded way of telling a pretty short story.  Hard for me to even describe the place that I go during these three day periods.  The depths of exhaustion.  Unable to respond to email, unable to work on photos..  It’s not as though it’s nice time in bed for watching movies and cruising the internet.. I am without coherence when this happens.  Can. Not. Function.  Not a state that I’m eager to invite.  Three days of it is too steep a price to pay for barely over an hour of very tame mountain biking.

It’s so hard to acknowledge that the disease is making these changes in me.  It’s so discouraging.  And yet, perfectly natural.  Right?  I mean..  To be expected.  I DO have stage 4 fucking cancer.  Whether I look like it or act like it apparently doesn’t change the fact.  What a pisser.

 

Fast Boy Out.

(feeling fine today..  need to strike while the irons are hot.)

 

60 Responses to “Just to bring you up to speed!”

  1. Holly

    You are so amazing. I was just thinking about you and Hill this morning. And here you are. And I’m glad.

  2. Joanna.

    That is crazyyyyyy bizarre. I KNOW it tired you out that much but I am still happy you go riding. Nothing like being out in fall, even if you have to sleep it off for days… somehow I think a ride is good for your soul, and therefore, keeping your cancer submissive, so much so that you tend to think its the flu!?

    You Rock.
    Jo

  3. carolyn

    vitamin C IVs will increase your energy and diminish your pain levels so you’ll need less narcotics

    please consider them. they might enable you to enjoy a bike ride without a 3 day penalty

  4. Paula Hess

    Oh man. I so get it. It’s depressing, I know. I keep doing the same thing: feeling just fine and running around, doing what I think seems perfectly reasonable, firing up the funktionslust, and then… We Sagittarii are all or nothing. You sure are getting a lot out of your beautiful life.

    Again, consider Xeloda. Please just ASK ABOUT IT.

  5. Jon Kennedy

    Ezra – you don’t know me from Adam, but as I am sure you have many fans and friends the world wide, I am simply a guy who has honestly appreciated your work and life from afar. I don’t know that that changes anything for you nor would you care to spend much energy on it… but I suppose in this short life we learn many things. One I have learned from the recent passing of my grandfather is that it’s never a waste to let someone know how you feel about them… now. And though we have never met, I am learning from you and appreciating your life. You are a powerful force Ezra and I am sure many would agree with that.

    thanks for your spirit mate… truly appreciated!

    JK

  6. Paul Rogers

    Ezra: glad to see your post. I get how depressing this has been. Keep on keeping on.

  7. Kim Goss

    You have always amazed me and continue to do so.

  8. William Gibson

    I follow your story. You are incredibly brave. You inspire me. I just turned 60. I have kidney failure and next week will mark five years of hemodialysis. When I struggle with my in comparison small potatoes situation, I often ask myself “what would Ezra do about this?” Thanks for sharing with me, with all of us,

  9. Annemarie

    Agreeing with JK here – you don’t know me from [Eve, haha] and yet across the gap of unfamiliarity you nonetheless touch lives in a way that some will never understand. I especially love your willingness to be open to sharing the harsher side of your illness … Your words and especially your photos softly speak of a part of humanity we really should work at recognizing. Thank you so much for sharing a part of you and your life.

    Peace!

  10. Lori T.

    So glad to hear from you… I’ve been checking every day for a new post. At first, I was thinking, “Well, you love mountain biking SO much – DO it. It’s worth it. But I agree… three days of nothing but sleep for your body to catch up after an hour bike ride is indeed too steep a price to pay. I’m sorry for this.

    You continue to amaze me with your get-up-and-go! You are incredible. You will ALWAYS be incredible.

    More love from the Colorado mountains…

    Lori

  11. aRobin2

    Ok, I’m not usually star struck either but thank you so much for sharing the recording from Bill Nighy, whom I absolutely adore in every way. What a fabulous reading to you, and such a gift for us–that knocked me out! Take his voice to your heart, hold onto that poem and its meaning when and if you go into another deep sleep–and please, wear those well deserved words everywhere you go, every day. Glad you are still celebrating your life and putting both feet in, or on, when you can. Putney says she has days when she’s dog tired too! Dog bliss you, XO.

  12. Alexandra

    Found your blog some time ago and usually I am just a quite reader. But this time, I have to leave a comment. I’ve been checking in on a daily basis to look for a new post and am so glad to finally hear from you again. Since I am no good ad word (especially since English is not my mother tongue) I just would like to agree with Jon Kennedy’s comment: you truly are a powerful force! Your journey – and writing about it – has left its mark!

    Greetings from Germany,
    alexandra

  13. gwendolyn

    been thinking about you and hoping for an update, happy you are feeling fine today, hugs, gwendolyn

  14. Ashley

    Ezra-I have been following your blog for a very long time now. I am always thinking of you and Hill and you amaze me in your stories and passion with bike riding. I love reading your new updates and I am always sending you and your family well wishes.

    Love, from Tampa FL.

  15. maggie

    Love and miss you tons, Ezzie. xoxo.

  16. brigita

    “Slow down, you move to fast [boy]…” That mind/body connection can be a difficult one to navigate.

    Big hugs from the heartland!

  17. Audrey

    You live a remarkable life, Ezra. Thanks for sharing it with us.

  18. joni

    HOLY SHIT BILL NIGHY. ohmygodohmygodohmygod. I could listen to him read the phone book everything sounds like a lullaby ha ha. “…who wore at their hearts the fire’s center…” Good one. He’s got you pegged. I so adore your hospice nurse too. “But it was an eaaaasy ride.”
    “Nuh-uh not for a normal person it wasn’t.”
    Yes! Thank you. It’s official. Weirdest freaking cancer patient ever. So good to see your face:) Thanks for the update.

  19. Joseph

    You really are very inspiring Ezra. You make me want to go out and do as much as possible. Thank you for sharing.

  20. Martin

    Well…fuck! But then again – so glad to hear (read) from you. Thought you might have maybe fallen off a bike and broke your neck or stuff…
    Boy, you’re so amazing!

  21. Luisa

    You are amazing and awesome in all the best senses of those words. Thank you for this blog and for the updates — I’m sending you love from SoCal.

  22. Sam

    So glad to read another post, but totally understand the depression about the idea of not riding anymore. Saw one of your bikes parked at fairway a few weeks ago. Minty green and a rear rack integrated into the frame. Totally genius! All our love to you and your family.

  23. Sark

    “What a pisser” you say..
    I agree! What a MF pisser!!

    Bro..i am happy to read you..and that u went riding.
    And that Hill is the new queen of the Hill.
    You are certainly more courageous and positive than i am.
    I whine and complain with minor illnesses and injuries.

    Is there anything you need from Germany?
    Schwarzwaldschinken or Tannenzapfle beer?
    Anything to boost “esprit de corps”? ( for a moment at least)

    Oh..darn..my girlfriend says its forbidden to send food into the US…
    Bugger..

    Than..i can only send my love and respect
    I hope it is enough..

    Sark

  24. Thomas Kern

    Hi Ezra there is nothing to say other than it sucks! I am sorry to read your update. Reading your blog does however make me grateful when I get on my bike :-) looking forward to wearing my new jersey! Thank you.

  25. eddy

    you never cease to astound.

  26. Daniel

    Ezra I’m just so glad you’re still here and still write to us now and again. Love.

  27. Gavin

    Very inspiring reading…now get your ass back on that bike! How about a 20 minute ride? How about a 30 second ride? Cherish every moment, especially when sharing with your nearest and dearest.

  28. Lei Isaacs

    You scared me when you didn’t post for like 2 weeks. It sounds horrid to say I was gklad it was just because you were worn out, but you had that clusterfuck and then nothing for 2 weeks. Glad you got to see Vermont. I ajm willow naeco’s frind and I will let her know you are enjoying fall. Have you though about “half a loaf”, an electric bike? Yeah, its NOT the smae thing, but its the same thing, you know? Just more relaxed. Get in a few more miles before you have to put snow tires on it…..lol

  29. sue

    Thank you for the post. We worry.

  30. antbee

    Hi Ezra!
    You look great, and it is great to hear from you again! Please take your nurse’s advice. I am sorry that it may have been your last ride, and that you are depressed about it, but I agree the toll is too much for you. Selfish as this may seem, we want you around for as long as possible. Please take care.
    Love…

    Anthony

  31. Joan Zimmermann

    Thanks so much for updating, Ezra. I am happy to see you that you are looking well, and I think of you every time I get on my bike.

  32. Christina

    Great to read this latest post and hear of Vermont’s spectacular autumn leaves. Glad you got a fun ride in too. Bummer about the cost of such exhilaration. Maybe there’s a happy medium to be found somewhere in there. Someone needs to design an off-road bike for doubling. :)

  33. kay

    sorry in advance to all non-cursers: i fucking love you and this blog. thank you so much and so deeply for so many reasons.

  34. Sarah

    Thought of you this AM when I was riding my little bike to circus school — so cold (-4C) but bright beautiful blue sky and the smell of leaves everywhere. Thanks for sharing the beauty of this poem. Love to you and your family!

  35. Allison

    Lately, I hurt for three days after going mountain bike riding but probably for very different reasons.

    I think of you often.

    Take care of you (and Hill and Putney).

    Lazy biker out.

  36. sam

    i will feel remiss if I don’t mention…..dinner with Rick Grimes!!!????!!!

  37. Roger

    Very happy to have some words from you Ez. Even though you’ve had a tough time since your last post, you make all of your waking hours so vital and worth reading about; Bill really found the right words for you in that beautiful recording.

  38. Tracey

    So beautiful, the poem read by Bill Nighy. What a treasure, I cried. Much like you, Ezra……. a treasure.

    Sad Girl Out

  39. Shelagh Delves-Broughton

    What a beautiful gesture that Bill Nighy made to you Ezra. A class act. It was quite haunting in that it was, exactly, perfect for you!

    ( I posted this originally in another thread by mistake )

  40. Hedy King

    A pisser indeed. Rest well. Live well. Ride on, Fast Boy. You are inspiring.

  41. Rachel

    I’m in New Haven. If you ever need a hand on your way up north, send a note.

  42. Linnea Duff

    Ezra dear; my second attempt at a comment—I can only imagine that I neglected to push submit the first time.

    I too am starstruck (make that gobsmacked) by your lovely narration by Mr. Nighy (for whom I harbor what might be called a crush). I am also sorry that your bursts of energy are followed by such utter fatigue—it must be surprising and disappointing both (to put it mildly). Your are always in my thoughts (as are Hill and Putney)

    xoLinnea

  43. rich dahl

    “Amazing. Like it was made for me. We had a wonderful fall ride.”

    hahaha great!
    thanks for the post. i pray blessings flow on you & famiia.

  44. Charles Xavier

    Thanx. For. Everything.

    cx

  45. Grendeze

    You know Andrew Lincoln from “Walking Dead?”

  46. dave Johnson

    Hey Man I’m still following with all my heart and soul you are a true hero and an inspiration to us all on how you have made the toughest battle ever in life and have shared everything with us all, when i feel down like the comments above i think of you and what would you do. Keep strong each and every day i know its easy for me to sit a type those word but i know you are fighting this each and every wakeing hour.
    Peace and love to You and Hill
    D&G xxxx

  47. Laya

    Bill Nighy!!! Wow!!!! I’m star-struck too. . .and what a wonderful poem and a wonderful read!

    Anyway. . .I think of you often and treasure my photo of your Putney in Verrmont. I lived there for three years and there’s nothing like Fall in Vermont. I’m really glad you got to go. . .

    xoxo,
    Laya

  48. Charles Boyd

    As always, your attitude toward the hand dealt you is inspirational. Nice to know you are still willing to take the time to share your life; and nicer yet, by far, to know you are still in the world. Your absence will pauper many. Please keep these updates coming as long as you can. My thoughts are with you and Hillary.

  49. Stuart

    Hey Ez, Antonio and I went to Il Buco Alimentari & Vineria on Monday based on your description several months ago. Extraordinary! We are in NY on and off through Dec. 6 and would really love to see you if we can…leave for Mexico on Friday (Nov. 8) but will be back on Nov. 20. Your Mom knows we are here too and hopefully we can all get together.

  50. Russell

    I can’t even fathom having cycling taken away and know that must be more than just a pisser to you, so I wanted to re-iterate what a few other posts already mentioned:

    1. TANDEM – I ride with several people who have tandem mountain bikes (both Ellsworths). Maybe it’s not feasible, but maybe it is. It sounds like Hill would be a great stoker and/or captain, and I’m sure there are plenty of other folks that would love to ride with you, too

    2. ELECTRIC BIKE – I’m starting to see more and more of these on the trails here in the SF bay area… helping people get up the mountains. Lot’s of options out there, and it would be a fun project to convert an existing bike. EGO has a really sweet setup http://www.ego-kits.com/?wptheme=egoennew

    Thank you for inspiring me, Ezra. Keep on doing what you do

    Love and wheelies

  51. Shawn

    Hello Ezera, This is my first post, just wanted you to know that I just blew through your blog from start to finish. Quite an impressive read. I will think of your enormous … will to keep living with vigor and positivity(. I have stage 4 squamous cell carcinoma with mets. to lymph node superhighway.) and stay the course. You are what warriors are made of!

    Keep up and I will do the same. shawn.

  52. sue

    Golly gee, we get so worried about you and then find that you are pretty fine, mostly and taking pictures of the NYC marathon with your new camera. Go you Ezra, we love hearing from you. Take life from our posts, we goddam love you.

  53. M

    I’ve been following along for quite some time as well and just wanted to say hello. You don’t know me (of course), but I think of you often. Sending so much love your way.

  54. India Nagy

    You are always an inspiration. I just get happy to check in on your posts every few weeks and see that you are still here, living life and writing away. Do what you can and live every day as best you can.

  55. Green Monkey

    I couldn’t listen to it from my iphone – glad I remembered to come back. CHILLS! I just love when people, strangers especially, give love so freely. It’s a beautiful thing.

    I have started chemo. I am learning how to live alone. Together,or separate, it sucks. but it’s real and it’s where I am today. and I am here today. and this is good.

    without sounding weird, I think about how you’re doing pretty much every day. no pressure but I think… if you can do it then i can too.

  56. Paul

    Love the Xpan shots. Keep em coming.

  57. lee

    Now let’s get Ze Frank to do a piece on True facts about ass cancer.

    Thank you for sharing your story – it is making a difference!

  58. sue

    Saw your recent pics on FB. Love that you got a new camera, love that you are taking great pics. I look forward to your every new post and pictures.

    Don’t forget to take care of Hil. Please make sure to provide for her.

  59. Tracey

    Good thing you said that last line there, Sue.
    Cruel, Insensitive, Annoying, Gutsy…just a few of the words that come to mind.

    Sad Girl Out

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