The latest

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The island of Manhattan does not run North-South.  Not remotely, in fact.  The “southern” tip of the island points southwest, or maybe a little more accurately, south-southwest.  As a matter of convenience we still say that streets run east and west and avenues north and south.  Our house is on the “west” side of Manhattan ave.  So our front windows face east (in fact east-southeast) and our back windows face west (in fact west-northwest).  In the fall, as the sun begins to rise farther and farther south on the horizon, there comes a time when it begins to reflect off the windows of the apartment building across the courtyard straight into the windows at the back of our house, most especially the windows of the kitchen, so that early in the morning when you go down to make coffee, the kitchen is lit up as bright as day.   The mechanics of this will be perfectly obvious to some of you..  the rest will just have to take my word for it.  The point is that this morning, for the first time in what feels like WEEKS, I was the one to wake up first and go down to make coffee, not Hillary, and I noticed the phenomenon and was reminded both how wonderful it is, AND that I hadn’t been down to the kitchen before about 10:30 or 11:00 since sometime well before day light savings.

Historically, I have always woken up before Hill and been the one to go downstairs and make coffee.  I have the pictures to prove it!  But over the last bunch of years it has gone in waves.  I would say that still the majority of the time it has been me, but those days may finally be gone.

These days I typically get up an average of 10 times a night to pee.  Yup.  The last time probably around 4 or 4:30, at which point I fall asleep and finally get into some really deep sleep, and am startled awake when Hill arrives with the coffee at 8:30 or 9:00.  This last week that was certainly the pattern.  The pattern was also that I would sit up to drink my coffee having trouble keeping my eyes open, and having trouble finding a comfortable position with one or another of my chronic pains flaring up.  Yesterday, after finishing my coffee, in search of a comfortable position, I found myself lying down again and suddenly waking up to discover that it was noon.

I know this is the sort of thing that I’m supposed to be embracing.  Rest, Ezra, rest.  But, when, every other day, I need to begin irrigating at 3:30 or so in order for it NOT to interfere with making dinner, that makes for a pretty short day.  Back when I had a nine hour workday, I found myself wishing that there where more hours in the day..   And now I’ve got a three and a half hour workday!!!  It may sound as though I’m complaining.  That’s because I AM!!!  This shit SUCKS!

On Monday I woke up with sever pain in the front of my right leg.  I may have mentioned it here before.  Similar to the development of the left leg sciatica, this began as a deep dull ache in the right buttock and then began to radiate down, this time, the FRONT of my right leg.  Sounds strange..  unless you’re a PT, or a neurosurgeon, in which case you say something like, “yup, sounds like impingement on nerve root 4 or 5 or maybe both.”  The kind of freaky thing here is that the impingement is almost certainly being caused by the growth of a tumor, and NOT some sort of mechanical problem that could be corrected by the right stretching.  The other freaky thing is that nerve pain has the distinction of not responding much to narcotics.  The point of the story was that I had to email Jeremiah on Monday afternoon to tell him that we’d better plan to postpone our Tuesday match.  That if he was free on Friday, perhaps we could play then.  On Friday morning I had to email him again, this time to say, “better luck next week.”  By five in the afternoon each day, I have been feeling so exhausted – so DONE, that the notion of being down town when that happens and then having to find my way home through rush hour is just too overwhelming.  I have become quite delicate and it doesn’t suit me.

When I turned down treatment a year ago (almost!..), I had it in my head that I would just accept the medication necessary to keep me comfortable and gracefully slip away.  That without the side effects of treatment to worry about, I’d be fine.  It turns out that the disease itself has rather a number of side effects!!  Don’t get me wrong.. I don’t for a second, second guess my decision.  I believe wholeheartedly that if I’d gone the treatment route, I’d be dead already AND that I probably would have spent the winter and spring leading up to my demise in terrible discomfort, instead of tearing it up in the woods on the UTA.  But, there’s no question that this cancer is catching up with me.

My pelvic bowl and abdomen are filling up with tumors.  The whole area just feels packed in a way that it did not used to.  They press on things in a weird way and cause strange sensations.  Whether pain is under control or not, there are other issues.  The peeing is one example.  I’m not sure what the mechanics of it are, but at times I feel the urge to pee every five minutes or so..  so convincingly that I fear I’ll wet my pants.  When I get to the bathroom, very little happens.  I have to coax out a little dribble..  and then five minutes later repeat the process.  Other times expecting that routine, I’ll get to the toilet and out it comes like a fire-hose.  Occasionally, mid fire-hose, I’ll suddenly get an erection!  Which is hilarious, of course.  About half of you reading this know exactly how tricky it is to pee into a toilet with an erection, and the other half will just have to imagine it..  I’ve taken to jumping into the bathtub/shower where erect peeing does less damage!  (Pete Shumlin called me on the phone the other day and I found myself telling him about this phenomenon, wondering to myself, “why am I telling the governor of Vermont about peeing in the bathtub with an erection,” but he was cracking up, so I guess it was fine).  It’s also a bit of a liability when I’m out and about.  The urge can come upon me in an instant.  No warning at all.  So far I have not wet my pants in public, but I’ve come very very close.

Pooping is even more complicated.

The degree to which my abdomen is packed can make me feel stuffed even when I’m quite hungry.

My sense of smell and taste (closely related, of course), have started to behave strangely.  Things that I used to love not tasting very good to me anymore (strong beer for example..  meanwhile, I NEVER used to like sweet things, and now I find myself craving them).  Hill has had to stop using certain lotions because the scent is so strong and medicinal to me.

I can go on and on.  The biggest thing, though, is just the exhaustion.  I start the day with the best intentions.. with goals and ambition, but as the day progresses, I can feel that every little thing I do is chipping away at my day’s allotment of energy – Like playing some sort of dungeons and dragons type video game where you watch your bar of life force at the top of the screen getting smaller and smaller – until finally I’ve got nothing left.  I simply need to stop.   I have never had a day’s allotment of energy before.  This is foreign to me.  I’ve always been a bit of an energizer bunny.  The quality of this exhaustion is desperate.  When it finishes me off, it is with a quality of desperation that I need my bedroom..  need to lie down..  need the comfort and safety of the familiar.

I don’t mean for this to be a bummer of a post.  It has been a minute since I’ve written anything here and this morning I finally had the energy to!  As has always been the goal of this blog, I am simply documenting the progression of this disease as honestly, and with as much detail as I am able.  The truth is that the DISEASE is a bummer.  Particularly in what I imagine are these final stages.  It has left me feeling frustrated as hell lately.  There is so much in this life of mine that I adore.  So much joy that I get out of creation..  out of working in the shop, making photographs, cooking and sharing good meals.  Lately I feel as though I’m getting robbed of that joy because of simple exhaustion.  Sadly I don’t get the same reward and feeling of joy out of lying on my back in bed all day (with frequent trips to the bathroom for half-assed peeing).

But today is a good one.  I was up early for a change, it’s an off day for irrigation, and as soon as I finish this post (how on earth has it gotten to be 2:00 already!!!) I’m headed out to the shop to glue up stool legs, and play on the lathe!

Fast Boy OUT!

(Big big love).

 

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71 Responses to “The latest”

  1. Shelagh Delves-Broughton

    Naprozen anti inflammatories work wonders on the sciatic nerve problems yet moriphine won’t touch it..

    Here in Toronto it is called Naproxen and one gets it by prescription as it is much stronger than over the shelf anti inflammatories but I am not sure what it might be called in NYC.

    If you don’t already know this, get some Naproxen. Lie down on the floor with your leg over kitchen table chair so your back is then 100% flat on the floor, especially the area just above the waist that curves in and normally hasn’t any support when laying in bed etc. Make sure that part is flat against the floor as well and pop those pills……

    It is absolutely agonizing otherwise!

    You poor thing, if it isn’t one thing, its another ;-(

  2. Shelagh Delves-Broughton

    There was a time hear the end when my mother reached a state just like you are describing that I really felt she was going to pass away any moment. The lack of energy for like you, she had been quite the Energizer Bunny as well.

    I went to her oncologist, afraid she was going to die and he booked her in for a blood transfusion. I think more to simple appease me than any other reason but the morning after she was her Energizer Bunny self again and it did not stop for another 6 or 7 months and perhaps even a bit longer.

    Perhaps you know better than I but I swear she got some very good blood in that transfusion, whatever it was? Is that a possibility for you?

    When she was eventually passing away, the day before, her oncologist said that he hoped she rallied again, just as she had a year earlier with the blood transfusion so even he realized at that time that it had given her much more time with us……Whether that is very rare I don’t know. Whether it would work for you, I don’t know either but wonder if they have ever offered it to you for they would not have given it to her if i had not complained to them about her lack of energy?

  3. Mochuelin

    Big big love always for you, you are an example for me, an incredible friend, rest so much, sure you are preparing the coffee again!

  4. Laurie Roggenbuck

    Again, I just want to thank you for writing all of this

  5. nika

    Big love back at you!

  6. Linnea Duff

    Ezra, you are so generous to continue to share your journey with us—not many people have or would under these circumstances you know. And, again, your always unflinching honesty is remarkable. Because I have grown to care so much for you, I wish there was a way to make dying easier, but I know that is not the truth and truth is who you are.

    This morning I caught a snippet of this broadcast—the portions I heard were lovely. Thought I’d include a link just in case you were in the mood for a listen; nothing knew to learn perhaps, just affirmation.

    http://www.onbeing.org/program/contemplating-mortality/11072013

    love,
    Linnea

  7. Juniper Jones

    In a different time I’d be asking”…and you know the Governor of Vermont…how?”
    But, instead, I say it is an honor for the Governor of Vermont to know you, Ezra, as it is for me. Your honesty is unflinching. Much love, Jill

  8. Joanna.

    Now that you like sweet things I highly reccommend SALAZON chocolate. Shit is da bomb. Dark chocolate with sea salt. Both sweet, salty and chocolately (57% cocoa).

    Can prob find it at a health food type store.

    Enoy the shop!! <3

  9. Deb Wellman

    Ezra, I’ve read your blog for a couple of years now. I have much respect and admiration for you. Thank you for sharing your life with us. You are an amazing person. I wish I could have know you and Hill. Blessings to you both, and prayers from my heart.

  10. Colleen

    Thanks for the update! Lots of love to you and Hill from Toronto. xo

  11. Noel

    Sending you love from Los Angeles.

    Noel.

  12. sue

    Ezra, it sounds like you have classic bladder infection symptoms. Urgency, frequency and low flow. Burning while passing is another unmistakable symptom. Irrigating may have caused bacteria to infect your bladder. Cranberry juice (or supplement in pill form) and lots of water will help until your doctor can prescribe something.

    Good luck, good to hear from you.

  13. arianna

    …hey my dear friend…not the latest at all,i’m sure.Thanks again 2 find some time for us,ezra,remember you are often in our thoughts,your far-friends allover the world,Hold on ,you gladiator,and keep enjoin’your wife,your amazing work,putney and your friends,kitchen,bike,photos,simply your incredible life.
    Big love back
    arianna

  14. Roger

    Even when your news is not so good Ez, its delivered with such honesty and humor. Your blog reads like a guide to living life to the fullest. Thanks for keeping it going mate, Roger

  15. Gary O

    You are an inspiration – motivator -and an example of grace – Thanks for your words and thoughts, Be strong, hang tough, enjoy all you can – Big Love to you and yours –
    When I grow up I wanna be like Fast Boy !

    Beautiful work too -both the wood and metal.

    Peace and Love
    GO

  16. Eoin

    I dunno, Ezra; you really seem like an incredible person. I’ve been following you online since well before your cancer surfaced – I think I just wanted pretty wooden mudguards at the time – but while I’ve always been impressed and covetous of your amazing skills with furniture, bicycle fabrication, cooking, dancing and photography; and although I realise I only understand the barest fragment of the experience you’re currently having, I am in constant awe of how you and your friends & family choose to live, and very grateful you are sharing it with those of us who have never and may never meet you.

    As ever, all the very best, and I hope the good days long outnumber the bad.

    Eoin

  17. Joanna.

    I somehow failed to mention how hillarous it is you told to governor of VT about your peeing in the bathtub erection. Some things you JUST CANT make up! And I will have to take your word on the difficulty of such a process of peeing with an erection hahaha.

    Ohhhh ez..

  18. Erin O

    Your words are gifts every time. Thank you.

  19. chiara

    Love from Italy dear Ez. Wish you a Perfect day.

  20. carolyn

    cancer cells love sugar. i wonder if that’s why you are suddenly craving sweet things

  21. Margo

    I don’t think your readers are coming here for you to cheer us up! I think (ok, speaking for myself) that we appreciate your candor and how you are willing to share with us your journey. It’s both what you say and how you are saying it. Not too pretty, not too anxious, but pretty real. And your love of life comes through in every post, which is really the most compelling thing.
    “the disease itself has rather a number of side effects”
    I think that says it all. You’re going through something that in many ways you aren’t being allowed to negotiate on any level at this point. We (ok, I’ll speak for myself) are holding you close in our thoughts and prayers as you navigate unknowable territory. Take care, Ezra, and thanks again.

  22. aRobin2

    Putney says he pees that many times on any walk, “so what’s the big deal?” “And, why don’t you just put a hydrant by the bed?” Of course it might be time for the “texas/condom catheter” so you could get some sleep on occasion but either way, what a pain in the penis!!

    Thank you for sharing all that you’re going through. I know we all wish we could each shoulder a tiny bit of the load to ease your days but since we can’t, we just send our love, our listening, our sharing and caring and hope, somehow, you feel it, you wrap yourself up in it if you ever need to, and that though it isn’t much, it is a little something. Here’s to more early coffee deliveries for Hill, more sleep and less pain for you, surrounding you with love, light and enough energy to keep the Ez Bunny moving at a speed he chooses, xoxooxo R

  23. CJ

    I will make it a point today to pee with an erection in your honour (well that reads kinda weird)

    bestest

    CJ

  24. Tracey Banks

    Honesty. That’s what you are. Thank you once again for sharing. Feel the sunshine as often as you can. Xo.

  25. Justin Cook

    Big Love, Ezra.

  26. Jennifer Pimental

    Thank you so much for sharing everything. Your honesty is just amazing. I think of you almost every day, sending good wishes your way!

  27. Ann Breidenstein

    Hi Ezra!

    Thanks for taking the time and energy to keep your many friends posted on how you are doing. I’m so glad you are having a good day today, and have a wonderful meal that you were able to cook! xoxoxoxo

  28. Elizabeth Aquino

    I’m listening, a stranger in Los Angeles. Beautiful.

  29. Maria

    Dear Ezra,

    thank you Again for your revelations. Your example of how to live with grace and generosity continues to inspire. The other thing that is happening is that as I read the comments of your other witnesses, I am amazed at the loveliness of these people, and how your story telling and sharing of your experience is bringing out so much love for you in others. It increases my faith in the general goodness of humankind and gives me courage to be more honest in my own life.

    xoM

  30. joni

    I always think you’ve run our of ways to surprise and then you go and talk to the governor of Vermont about peeing with an erection:) I remember having to google Shumlin when you first started making nose bikes. Apart from the obvious joke, he sounded like a really lovely guy. For whatever reason, and for whatever it’s worth, I listen to you and I still feel like you’re on a roller coaster, not a steady decline. Like the nice woman above said, I’ve seen people cement-blocked in fatigue for months (just like you described: a desperate / non-negotiable / the only relief is bed get me there now situation. A trip to the store: an unfathomable trek.) only to see them bounce back. And I hope the other woman who mentioned the bladder infection is a straight up Genius. She’s right – trickling pee + constant urge sounds like things pushing on the prostate, trickling + sudden fire hose pee sounds like a bladder infection. That would be so great. Seriously. C’mon bladder infection:) Thanks so much for the update. Those photos are ace.

  31. M.M.

    Cheering you on from the sidelines, Ezra. We are honored to read you each time!

  32. Karla

    Ezra, I am a nurse who happened upon your blog via a link shared by a friend who transplanted from MN to NYC. Your writing helps to keep me grounded to a patients perspective, and I hope you won’t mind if I share a link to your blog as well. I practice nursing in the Midwest, at Mayo Clinic. Your writing is visceral. Thank you for making such an effort in your exhausted state to share your experience. Your perspective offers a priceless education to me.

  33. Alicia

    I am always at a loss for words with your posts. All I can say today is – thank you.

  34. Susan Atkinson

    You are, without a doubt, a class act! I love how you can find the beauty and humor in everything life throws at you. Thank you for having us along for your journey.

  35. SlowPokePete

    Hey Ezra,

    Just want you to know that I am thinking about you.

    Peter

  36. sark

    Man,

    Your honesty and humour…. is mind blowing.

    I am at work.. drawing my fingers off (I am doing the design-thing you loathe.. no manual labour, just drawing and building stuff on the computer.)
    anyways.. I was just thinking “lets see how Ezra is doing”.
    And although my employer dislikes that the employees surf much I had a peek.

    I just read your post whilst tears started flowing (i’m quite emotional for a geezer). Colleagues of mine (an all male macho team) looking at me and asking me what’s wrong.. “ohhh nothing.. Allergy”.. But thats not true of course.

    Look. i’ve been following your post quite some time now..and I feel that everything I have said, am saying and will say is not not the right thing… never has been.
    Truth is.. a person in my position only can say stupid stuff. I am sorry.

    A final stupid remark from my keyboard

    You are a extraordinary person Ezra!

  37. Joan Zimmermann

    Hi Ezra- Only too happy to see you posting, and I also liked the new Hasselblad pics. Play as much as you feel you can. Big love right back at you.
    Joan

  38. tyler

    Ezra,

    May you continue to suck out all the marrow of life. You’re incredible. Thank you for writing.

  39. Paul

    Big big love back at you. And, stealing this directly from Eoin’s message: I am in constant awe of how you and your friends & family choose to live, and very grateful you are sharing it with those of us who have never and may never meet you.

  40. TomF

    32 miles in my new Fast Boy wool jersey on Sunday, toasty warm and proud to own. Stay strong, you are an inspiration for all that is important in this world.

  41. AmyL

    Your story is so beautiful, thank you for including us in this journey. Big love back to you. Peace.

  42. Sarah

    I’m undergoing tests for bowel cancer and I am scared. Reading your wonderful, life affirming blog gives me the courage to face the unknown. Thankyou Ezra.

  43. Tracey

    Good Luck, Sarah. I’m praying for you.

  44. marie

    God bless you Ezra. You are not alone! Thinking and praying for you. Lots of love.

  45. Laya

    I’m sorry you’re hurting and so bloody uncomfortable, Ezra. . .It just sucks – – plain and simple. . .Wishing you comfort . . .

    Laya

  46. sark

    All the best of luck Sarah!
    What a bummer…

  47. troze

    You remain in our thoughts and prayers each and every day.

    Loads of Love,

    j, r, s, & z

  48. Joanna

    Ezra Lionheart. You have never never never been a bummer. And to say “you inspire me” does not begin to describe what I think as I read your words. You make me want to be a better person.

  49. Robert

    Ezra, I just want to let you know my wife and me are with you in our thoughts… Hugs from far away.

  50. holly macrae

    Lots of love Ezra, thinking of you. Holly

  51. Tracey

    I feel much like the comments Sark made; everything I have to offer sounds stupid, at this point. Is it too obvious to write that I’m just plain sad? Is it too redundant to write that you are in my thoughts? Is it too awkward to write that I love you? Is it too honest to write that I wish you were in treatment? Words are failing me and yet, they are all I have to offer. I’m sorry for that. Big Love.
    Sad Girl Out

  52. Christina

    I see so many people go through conventional treatments in my work with an integrated cancer care centre here in Vancouver, BC and while many do very well with chemo and radiation, many do not. It is a tremendous education you are giving your readers by detailing the no-treatment approach. Thank you for bold enough to demystify and stand up for an option that many would probably never have considered.

    Still sending love to you from the we(s)t coast.

  53. Cyclin' Missy

    Just sending some love your way, Ezra!

  54. Rodrigo Ramirez

    Big love for you from Texas!

  55. rich

    Ezra ~
    Your conversation w/ the governor made me think of the old Jane’s Addition song (Pissin in the Shower) only you upped the ante. AND why did you tell him? Because you could! Also, I believe you gave Mr. Governor the most memorable conversation of his year. Kudos, dude! I swear, you are the man who keeps on giving.

    FWIW I agree 100% with your judgement on treatment.
    At a young age we lost my amazing (life loving) mom to colon cancer that reappeared in other areas after just under a year of being clear. She endured several more surgeries, more radiation & chemo (all for us) but still finally died from pneumonia, NOT the cancer. Realized the chemo & radiation shortened her life and… hurt the quality immensely.

    Day before she died her BP dropped way low. We had a few brief but amazing words then she closed her eyes, tucked into a ‘finish the race mode’ and was taken up the next morning. FSR I recall up until that point she would only allow herself Tylenol w/ codeine b/c she wanted to be 100% clear headed. Finally her last night we got her to take Morphine IV, but she refused the oxygen tube.

    Courage.

    Courage was her favorite word through it all.

    You have that in spades, Mr. Fast Boy.

    Bless you. You lover of life & encourager of many. And thank you for holding the light up to what I (a lot of times) take for granted.

    Cheers.

  56. Jax+Puzzle

    Thinking of you, Ezra. Hill and Putney too.

  57. antbee

    Thank you for the update, Ezra. Will you please stop apologizing to us?
    {{{HUGS}}}

    Anthony

  58. jennie

    i read this and wish i could be there to know you and hillary and putney (and wish i still lived in NYC) so that i could visit and hug all of you. i am looking at this photo i bought: you on your (assless?) bike, taken from above. you are looking at all of us with bright, honest eyes, holding us. we are all looking back at you, holding you. you have engaged us and send your big love; our big love is flowing right back at you and your family. thank you for sharing this journey ezra. so many thank yous…i hope you can feel the comfort of all the love coming your way.

  59. Thom

    Our hearts are with you.
    Thank you for sharing your thoughts with us Ezra.
    It´s beautiful.

    All the best to you and
    the ones you love.
    From Austria.
    Thom

  60. Joe

    Adding to your legacy of beautifully crafted products and prose, you offer the world of men a perfect name for the awkward situation of urination through erection.

    Henceforth, this condition shall be known as the shumlin, as in, “Sorry for the mess dear, but I woke up with a wicked shumlin this morning.”

    Maybe you’ve invented a uro-gubanatorial naming convention. Those annoying public dribbles and accidents ? Call them spitzers.

    Btw, a panty liner may help with small spitzers, though few men are brave enough to wear something with the word panty in it.

    How about calling them schwarzenuggers instead?

  61. TJ

    Thanks. You’re such a gift. Thank you thank you.

  62. Jennifer Pimental

    Still thinking of you :)

  63. muskva

    Hey Ez,
    I’ve been silent recently, but always “checking on you” and what’s going on on your side. In an hour I’m going to see your dear friend Glen, who is playing a concert in Copenhagen! It will certainly feel an inch closer to you!
    Big hugs for all 3 of you.

  64. Susan

    Thank you, Ezra. And God bless you.

  65. Pete Vordenberg

    This crushes me. And uplifts me. It teaches me. That is for sure. Thank you for your writing.

  66. Ron Hampel

    I check in on you and your blog from time to time. You’re helping me to understand so many things. Thank you, Ezra.

  67. M

    Thinking of you very often and sending so, so, so much love. You are so amazing.

  68. Amy P.

    Just wanted to say, that as a nurse, I really appreciate your detail with this disease process. I really helps me understand what one of my patients go through.
    As a follower, I just wanted to say something….but I can’t write like you…so just…thank you for sharing, keep on.

  69. Mara Newman

    I just looked at your most recent photos. There is no other place for me to tell you how much I enjoyed Putney’s leg poses, so I am doing it here. I am very grateful for the photos because they made me laugh, and for knowing that you are well enough to take them. You and those who love you, are never far from my thoughts; so I check every day to see if you have posted anything. I understand how difficult it is for you to keep all of us informed of your activities and, like all the other people who care so deeply about you, I don’t expect you to do so. Still, it makes me so happy when you do. Big Love and boatloads of admiration for you, Ezra.

  70. Anita

    Been thinking about you.

  71. D

    May god bless you ezra. You have no idea how special and important it is for so many people to hear your story.

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