Too funny not to share.

hillseye

I went back and read my last post and I’m amazed that it is even as coherent as it is.  I was sitting in the office writing that post, with fairly constant interruption..  from my step father, sitting in his rocking chair in my folks living room by the fireplace where we were watching the football game, wondering if he could fetch me a drink.. “No thanks, I’m fine for now.”  From Hill who was preparing a shopping list for the grocery store, but had in fact left for the store at least half an hour earlier.  There were other interruptions that I can’t remember now, all equally confusing in their quality of realism AND their obvious absurdity.  I was alone in the room.  The room was our office, and not my parents living room.  And yet I was having the most vivid interactions with people who weren’t there.  I was sleepy for sure.  Beginning to doze off, and yet these interactions didn’t have the quality of dreams.  I was AWAKE as they happened.. (but I just said I was beginning to doze off..?)  Crap.  It’s happening to me again.  I’m going to go get another cup of coffee.  I’d like to get this post out so I can get to the shop and play on my milling machine!  And WHY on earth does Hill have a black eye??  And WHAT is funny about it???

Ok.  I have coffee.

After finishing that post, or ending it at any rate, I went into the bedroom to have a nap.  Hill intercepted me on the way there, “Are you all right, baby!?”  I had sent her a text a little earlier that said “I’m hallucinating a little.  You’re at Fairway, right?”

“Yeah.  I’m fine, I think, I just need to have a rest.”  I wandered into the bedroom and she followed me.  It wasn’t until she was lying down on the bed that I noticed, or maybe she pointed out, that she had a black eye, or a quickly developing one anyway.  She had slipped on the ice on the way home from the grocery store and fallen on her face..  Her hands have been asked where they were at the time, and they’re pleading the 5th (in her pockets keeping warm, I suspect).

We both fell asleep.

At some point during the nap I was woken up by the washing machine trying to shake itself  to pieces and take most of the surrounding cabinetry with it.  An unbalanced load, causing the machine to shift back forth up down 3 or 4 inches at a time (a problem that has been there for a while, but keeps getting worse).  Real or hallucination.  I can’t be sure, but I replaced the washing machine this week just in case.

I went back to sleep.  The next time I woke up it was dark.  I had no idea what day or time it was.  I also had no idea why I was soaking wet.  I figured that out quickly enough, though and thought, “shit shit, I hope I haven’t peed all over Hill!!”  That’s when I noticed that Hill wasn’t in the bed..   and that I hadn’t been IN the bed either really, rather on top of it.  AND I was fully dressed (and fully soaked in urine..   as was the bed under me).  AHA!  This was a nap!  It all started to come back to me.

Now.  This was not a first (but certainly a most dramatic).  For the last week or so, something strange had been happening to me in the night.  I’d wake up to go pee, sometimes with some urgency, other times not as much, but I’d go rushing to the bathroom to pee.  Sometimes a dribble, sometimes a fire hose.  I’d head back to bed and climb in only to discover that there was a wet spot in the bed!  WTF!  Truly confusing.  I came to the conclusion that the effort of sitting up maybe was forcing a little out as I left the bed, and I was finding the puddle when I returned.  Hmm.  Or maybe I was just wetting the bed and not realizing it until I was awake enough to.  THIS, though.  This was a new level.  I had woken up in a true puddle of piss.

Curiously, in the last week or so I’d also been noticing that even while I was awake, my body wasn’t really sending my brain a very strong signal telling me it was time to pee.  Almost like I’d just have this back of the head notion that it MIGHT be time, and run to the bathroom JUST in time to avoid total disaster.

Peeing has been strange for quite some time now.  First radiation.  Then surgeries.  Damaged nerves.  All to be expected.  Now add growing tumors, and all bets are off.  But up until this last week it had all been manageable.  Suddenly now, I was wetting the bed, AND not being able to trust that while I was awake I’d get the message in time, or at all!  In the somewhat vain hope that this might be the side effect of some combination of medications that I was on, I wrote to my doc.

This was her response.

It sounds like neurogenic bladder with atonia of the bladder sphincter, which is an expected development of the sacral plexopathy resulting from pelvic tumor involvement. Unfortunately it is not a side effect of any of the medications you are taking, but rather an indication of disease progression in the pelvis.

There are no pharmacological solutions for it.
At night you can use a Texas (condom catheter) to avoid getting wet and to be able to sleep. During the day, unless you do self catheterization several times a day, to avoid allowing the bladder to fill to a level that triggers spontaneous emptying, there is not much else you can do. There are pull-ups for adults that are not as undignifying as the diapers. They are thinner and unnoticeable under your pants.

The other not so convenient solution is to have an indwelling catheter attached to a leg bag that would constantly drain the urine out of the bladder.

I wept.

Not so much because of the new practical considerations to be taken on, but because once again I was having symptoms which simply pointed to the progression of the disease.  First the arm (doing worse all the time, thanks for asking), and now, a week later, my penis!  Et tu?

I had a moment of feeling completely overwhelmed by the whole thing.  I feel as though I’ve taken a lot on over the last 5 years (I say “I,” when obviously I should say “we.”  First the we that is me and Hill..  then the we that is me and my family/close friends..  all those who are affected by these changes. Perhaps you can simply read that as implied).  I’ve had to take a lot on.  I’ve had to make major adjustments.  In the past, though, those major adjustments, like learning to shit in a bag for instance, have come with the promise of survival!  Do this, and you will probably have a normally long life.  This new stuff is just the opposite.  “Here you go.. here’s a sucky new thing to get used to.. AND the sucky new thing is a good sign that the disease is progressing rapidly in your body!  AND the sucky new thing is likely to get worse not better”

“Oh!!   Cool!   Thanks!”  I don’t know how to keep that up.   So I wept instead.

My mother picked up some pull ups for me at the drug store.  Putting one on reminded me a little of the first time I ever put on a dance belt..  Story for another time.  I was in the bathroom trying to figure the fucking thing out… Hill in bed already waiting for me to come and watch our TV show.  Everything about it was gross.  Synthetic, bulky, poorly designed..  Not to mention, a FUCKING DIAPER!!!!   I wept.   I don’t even wear underwear.  I sure as shit wasn’t going to wear this.  I ripped it off.  Weeping.

It wasn’t until the next day that I got the ray of sunshine I needed.  I had told my hospice nurse that the texas/condom catheter sounded like something I’d like to try, and she had ordered some up.  The whole thing had enough of a Rube Goldberg appeal to it that I couldn’t resist.  The packaging alone had me grinning.  I mean “Freedom Cath.”  Yeeeeee haw!!!!   Rebel yell.  And the illustrations for how to?  I can’t NOT share.

Untitled-2

That’s the shape of things gang.   I’m hoping that these signs that disease is progressing rapidly slow down a little!  I could use a break, AND I’ve already got the message!  “yeah!  I heard!  progressing.  rapidly.  got it.”

Night time is sorted out.  It’s a little baroque, but the freedom cath works for night time.  I’m still working on the right daytime solution (I’m not looking for a flood of advice here gang..  “he said ‘Flood.’  te heeee!”  I’m sure that I’ll find the right solution for me).  It IS a real limitation.  Last night I walked the 5 blocks to the store and on the way home had to dive between a couple of parked cars to avoid wetting myself.  Hardly had any warning at all.  It makes a trip down to the pool hall an impossibility.  Of course, I can’t feel half of my bridge hand anyway.

On a brighter note, I’m having a ball in the shop.  Finding ways to get the most out of that left hand, and allowing the right hand and the machines to do the rest.  I’m making a clamping fixture for making picture frames that will really be the art piece on its own.  I may not even make any frames.  We’ll see.

 

 

 

 

 

71 Responses to “Too funny not to share.”

  1. aRobin2

    Ok, well, since we’re skipping the daytime “flow” solution ideas, how about shiner stories instead?! Hill’s bruising rivals mine and the only reason mine was smaller was that I rushed to get ICE for my eye, whereas Hill was ON the ICE!! Here’s my funny story that involves my caregiving for someone who needs a little urinary assistance at night.
    My shiner involved a walk at 2am with my elderly dog. We’d been walking for a bit when I looked down at her and had one of your hallucinatory moments where I thought her halter was askew. I had her wobbly legs balanced between mine and she became impatient with my finagling in the dark. I leaned down when she jerked her head up and that was that!
    OUCH! and my immediate thought was, “BLACK EYE!” I hurriedly headed home to get an ice pack and then we continued our walk with my one hand on the leash and the other one on an ice pack but it did help with the swelling.
    But the funny part is next. I walked home and the pain was so great that I thought I’d email my silly shiner story to a cross country friend who would be up on soon.
    Funny enough, she was getting coffee and her husband happened to glance at her emails. A bit later, he told her that she’d have to explain my email to him. What he wanted to know was, “why was I walking down the street in a halter at 2am??!!!”
    It sometimes pay to have a clear head when you are writing or READING email. Hope you got a laugh Ezra, it was delightful as always to hear from you today, and to hear that you are having fun in the shop!! Hope the creativity and other things continue to flow!!! ;) XOXOXO

  2. aRobin2

    And here’s best wishes to Hill’s healing since it takes awhile……

  3. antbee

    Sorry Ezra.

  4. Diane

    Simply happy to hear from you. Peace, comfort and big love!

  5. Charlie

    Texas Pistolero!

  6. Paul

    To borrow a phrase from elsewhere here your wife is truly tolerant. I also get the sense from here and from flickr previously that she is a great lady and there should be a festival in her honor. BTW what you consider might be incoherent makes me wish I could express myself 1/10 as well.

  7. Shelagh Delves-Broughton

    Have you by any chance spoken to your doctor? My father in law at one point experienced similar situations as you are describing here and they says it was a toxicity to the Morphine. I understand as you require more and more this can happen.
    I am not a doctor but you might want to ask them about this.

    Know that you are loved, the world over by many many people, something that very few people are fortunate enough to find. In your case though, its not a false sense drawn from a celebrity manner but the way in which you live, your strength and your courage.
    You have accomplished so much more in a shorter time than many will ever dream of being able to do.
    I do hope knowing this brings you some comfort. Hill as well!

  8. Paul

    Good to hear from you again, Ezra, as always. What a process this has been for you all! I hate that you’re having to go through it. I’m also grateful that you’ve continued to share these little glimpses …

  9. Joanna.

    Well my only shiner story is in 7th grade. The day before the first day of school I was running through the woods with my neighbors. We were going to the spot where our work-in-progress fort was located (wood nailed to trees….. the platform the only thing there, all mishapen because we used little wood scraps). My neighbor was ahead of me and pushing back trees out of her way as she went. I was right behind her and she let go of a branch and it smacked me right in the face.
    When I got home I put ice on it but the damage was done and I had a bruice errily similar but deep purples, reds, and blues that eventually faded to green.
    No one asked about the tender bruise except for the gym teacher I had known all my life. “Did your brother punch you in the face?” Miserable I just said, simply, “No.” But in retrospect it’s funny he asked.

    Hope hers heals up quick.

    As far as your progression goes, that plain and simple fucking sucks. I’m glad something in the shop is keeping you busy. I’m glad you are still sharing with us all.

    Sending you good vibes *~*~*~
    xo

  10. joni

    Okay. So. This one freaked me out pretty good. I’m kindof staring at the screen right now with my heart thudding whomp-whomp-whomp in my ears. So. I’m gonna sit here and whomp-whomp-whomp some more… but remember when that trail threw you off your bike and snapped your arm all the way thru so you stopped riding your bike for a while… but then you got to ride your bike again and you were like, “No – don’t be silly – I’ll be so safe. I’ll TOTALLY stay on the bike this time!” and the next thing we saw was a video of you speeding down a dirt trail in the woods, hitting a root and flying off your bike? Remember that? Hilarious. So… just please careful in the shop please. And yes – I can see your eye roll from here – I know you know that. It’s not advice. Honestly, just worried and sad over here and I don’t know what else to say. I’ll get it together. Thanks for writing all this down:) Big Love. The biggest. Like huge. All the loves. Comin’ atcha.

  11. Shelagh Delves-Broughton

    Sorry, I mentioned asking the doctor earlier about the possibility of morphine toxicity. I hadn’t read all of your post and see now that you did speak to your docs concerning the peeing……sorry, i was specifically referring to the hallucinations.

  12. Kay

    Today is my birthday. Thank you for reminding me to live and love to the fullest. We skied in beautiful, amazing Aspen, Colorado. Nothing too much about pee except that if you’ve given birth (I have), the muscles are a bit compromised and urine can sneak out with hard effort and/ or dynamic movement such as skiing. That is all. :)

  13. Lois

    Well… I remember those absorbent liners we were told to purchase for home births. Kind of to save the bed. They hold a lot of moisture. Was hanging out with good friend tonight who has MS. The pee thing has been an issue for him as well, it was his first symptom. Being a [so far] survivor of kidney cancer, I know how freaky pee can be… trying to convince the doctors that no, I was not on my period and no, this was not a urinary tract infection… Something so simple, so not.

  14. kt

    Not to make light of your situation, but this post reminds me of David Sedaris’ experiment with incorporating a “Stadium Pal” into his daily routine: https://www.youtube.com/watch?v=g8LlwlCU0EA

  15. Monica

    Dear Ezra
    Just about New Years I stumbled across your blog, and from the first few entries I just kept going. I followed your ups and downs as I read and read and read for days. When I left the computer you stayed in my thoughts. And what I found was that it wasn’t your disease or how it kept sneaking in on you that lingered in my mind. It was the sense of YOU. The man you portraited through this journey – the man, not behind the disease, but WITH the disease. I remember how you wrote in the beginning: fuck cancer, I am Ezra. And though the top of the blog now says “Fuck I’m cancer Ezra”, that not the impression a total stranger gets, not even from this post. It seems like you are still very much Ezra and today seemed appropriate to share that impression with you.
    All the best from
    Monica, a Danish 25 years old student with depression, who has found hope and motivation in your creativity and drive.

  16. Mette

    I’m sorry you have to go through this Ezra. This horrible disease really should stop fucking with your vital functions and let you get on with the things you love.

    I have no idea how you manage to keep sharing your life with us so eloquently and it moves me beyond words. I hope someone will turn your writing and photos into a book some day.

    ps. kinda proud that my home country has manufactured your Freedom Cath ;)

  17. Farouk

    Thank you for continuing to share.

  18. alyssa

    thank you, ezra, for keeping those who care about you in the loop. today, you motivated me to send out some stories for possible submission, i had to do something today. other than yoga. i hold all of you in my heart

  19. SteveFl

    Hope your wife is on the mend.
    “Rube Goldberg” have heard that term used in years :-)

  20. Ana

    Thanks for showing us that, life, against all odds, can be lived so fully, thanks for giving us so much already, your art, your style, your will power goes beyond one can imagine and it reaches us to be engaged with life and make a difference. Thanks for sharing, thanks for hanging on to life as strong as you do, thanks for your endless love.

    A.

  21. Cyclin' Missy

    Just sending love to you and Hill!

  22. kay

    she’s beautiful even with a shiner!

    xoxox to you guys.

  23. Joanna

    I have a story I hope you will think is funny. I bicycle to work on a garden variety road bicycle that I love a lot. I am a middle-aged mom with a job but I love to pedal as fast as I can. So I am huffing passionately along when my route takes me off the road proper and onto a paved bike path. It has a sharp turn and also, cruelly, it has a metal bar dividing one side from the other. Impossibly, I fail to make the turn and I fly off the wet path and into the tall grass where I am flung into the air, feet still clipped in. I lie there and my first thought is, “I’ve broken my wrist.” My next is to notice that a person walking their dog is literally pointing and laughing at me. The next is that I am stuck in my bicycle. I collect myself and get back on and I laugh also, because it is pretty funny. And I’m still here, for now. And my wrist hurts something terrible but I start pedaling again anyway and it turns out that it is not broken.

    Sending all my wishes that this thing you have slows way down.

  24. Paula

    Sending you love from VT.

  25. Jennifer

    Hi! I just wanted to share with you how much I love the Putney print I bought from you some months ago. It’s a funny thing to fall in love with a dog you’ve never met, but I must admit following your blog has led me to have a pup crush.

    I also loved how lovingly packaged it arrived!

    Thanks so much for your sharing. Sending you and yours tremendous love, and wishes for grace…

    All the best,
    Jennifer

  26. Colleen

    Love to you both, as always! Thanks for sharing your life.

  27. Charles Boyd

    Hey Ezra, I love that despite everything crummy that is happening to you (and your family) you continue to put out this wonderful blog and the photos – I look forward to each new post and really hope you continue to be able to post for a long, long time.

  28. Heather

    Like many, followed your story since hearing about it through a mutual friend. And after a while, on this post, I had to comment!
    Yes, the peeing situation is too funny not to share. My (former) lover and now friend had a spinal cord injury. There were so many things to cry about (and we did cry), but the peeing situation, oh it always provided much levity. If we didn’t laugh we would have cried. The best part about the condom catheters were the little penis sizers that they came with. We would hide them in friend’s bags, use them as coasters at parties etc.. Once I jokingly pulled one out to measure spaghetti to serve. Oh the fun we had.
    Hang in there.
    http://www.coloplast.co.uk/Products/continencecare/Documents/Optima/The%20Conveen%20Optima%20measuring%20guide.pdf

  29. Renee'

    Ezra, I found you from the suggestion of a fellow Stage 4 LC blogger. My fiance’ Dave has Stage 4 Lung Cancer. I have only been on this journey with him for 13 months and it feels like an eternity. I feel like I know you and through your writings I have developed a kinship with you and I feel pain and sorrow for what you are going through. I also am happy that you are so generous you open a window to your soul and allow us to share in your happiness. And peer in, in passing.
    You are a rare man, Ezra and the world will feel a loss not to have you. I know my world will be dark on that day. Know that I will weep for you. I pray for a miracle for you my friend that I will never know. The best for you, Hill and Putney.

  30. AnnaMarie

    Ezra – Moved to Texas from the midwest when I was in jr. high so I’ve lived here for decades. You are truer and braver than any cowboy I’ve ever met. Ride ‘em your way!! And Hill is a pretty lil thing no matter how she looks :-) Texas-size hugs coming you way…

  31. Anne

    I’m new to your writing, but in the last 24 hours, I’ve read every blog entry you’ve made here… which feels strange, seeing the past 5 years of your life sped up like that. I had mentioned to a friend that I knew someone who had just been diagnosed with Stage IV, after being in remission from breast cancer. Friend knows I love bikes and mentioned you. Our other friend has a set of your fenders. I think he knows someone who knows you. Something like that.
    Anyway, I lost a day of work at the office, unable to take my eyes from your writing to focus on my work. Oops.
    Thank you for writing. I was so happy at the point in your life when you took up mountain biking, because that is my joy too, and I said, “Yes! That’s it” when you wrote that it was like finding religion. I know! I met a rider once who had taken up riding at age 50 and was very fit and riding crazy in his 60s, when I met him, and I was happy that I could still look forward, all things proceeding nicely, to 25 more years of riding too. (You and I are the same age – well, I’m a teeny bit older.) I said to another friend once that the day would come, at some point in the (hopefully distant) future, that I would have my last mountain bike ride… and my eyes filled with tears, just at the thought of it. My friend thought I was a little nutty. She’s not a rider – she doesn’t understand.
    I am terribly sorry for what cancer is taking from you, in short. This is entirely crappy and wrong. You are doing a great service by writing so honestly about what is happening to you, pictures and all. It’s beautiful writing, and you are clearly a lovely guy, and I would have loved to go riding with you. Another time, I guess. And you’re performing the great service of education about cancer and palliative care, and also education regarding that literary goal of “the human condition”, adding your voice to the cultural landscape. Something like that. I hope you know that your record of your life has value.
    It is a great, painful, illuminating pleasure to read your work and to see what beautiful pieces of art you have created. Bikes are beautiful! And you are too. How awesome that you can still make jokes in the face of some of these undeniably terrible setbacks. Rock on.
    I raise my glass.
    Anne in Victoria.

  32. Deborah

    Just stopping by to send you and Hillary lovelovelove. My Sweet Man passed just before Christmas, and when bodily functions, or rather dysfunctions began, my primary goal was to maintain dignity for him. The second goal was to maintain our normal sense of humor and our awesome chemistry. The Saturday before he passed, and before the catheter, I was suddenly overwhelmed with the task of changing the hospital bed and him, as he was unable to move at that point, and I called Hospice for help. A new young nurse came and My Man said something about being embarrassed and I said, Baby, remember how I said you could not have a threesome on your bucket list? Well this is the closest you are going to get, so enjoy it. I pray for strength for you and your beautiful wife. Mostly, I am so sorry. lovelovelove Deborah

  33. rebecca loudon

    Hi Ezra. I got your stunning portrait back from the framer today. You can see it here if you want http://callingdrbombay.blogspot.com/

    Thank you!
    Rebecca Loudon

  34. Shepard

    Hey there Ezra…

    POINTEDLY: ref the Lymphatic?

    look around you may find a certified lymph massage person?

    8 years ago while going through my matter I always wondered how my lymph
    system capability failed to do it’s job. In a nut shell the valves that allow
    lymphatic fluid to pass through the system are opened via a ‘jarring of sorts’
    thus no jarring …no fluid circulation…from this loss of circulation the node becomes
    over whelmed/clogged and swells thus perhaps as swollen applying pressure and may be the root cause
    of many an issue. I believe the institute certification of the message concept is in Germany.

    I’ll look into the local fella here and see if there is a roster of sorts for your area…maybe
    one of those small diameter trampolines (the name escapes me) but getting into some bouncing
    may allow the valves to once again open. It may be likely though some nodes may need the soft pressure
    to assist a bleed-off to reduce the swelling. Perhaps an internet available lymphatic chart/map
    followed by warm/hot packs may sooth the nodes? Just trying and may be way out of line in a diagnosis.

    Ol’shepard

  35. brad

    Stumbled upon your kick ass bikes and beautiful blog! I am sorry for your suffering Ezra. I wish you all the peace of a starry night sky and all the warmth and love in the tangled locks and bright blue eyes of your earliest childhood.

  36. Allison

    Cure Medical makes a variety of catheterization products. I use their intermittent catheters (put it in when needed, take it out when done, no collection bag) and they’re superior to other brands I’ve tried. They’re so smooth that I can skip the lube, which makes travel a lot easier. If you go to their website you can request free samples in the size, style, and system of your choosing.

  37. Sark

    Ezra, Hill, I am thinking bout you guys.
    I cannot say what i feel when i read your post…too many emotions.

    Sark

  38. Westie

    Ezra
    Your blog is so astounding and gorgeously written. I can’t believe, in each post, the honesty, the courage, and the humor. You blow my mind. The other day I was felled by a migraine and I was feeling trapped inside my own little prison of pain and then I found your blog and I got huge perspective. You are so positive, so brave and so generous to be so candid with us. I ache for you and Hillary. I lost my own sweet husband to cancer ten years ago and I can’t imagine how you and Hill are both handling these struggles so sanely. (I did not.) And to two of the commenters above (one who lost a love in December and the other whose fiance is sick) who also seem to be handling their losses and struggles so bravely and compassionately, blessings to all of you. Even having gone through the journey (as a surviving spouse), it beggars the imagination that others can go through this and not lose their minds. You are a testament to what it means to really live, Ezra. I wish God took bribes. We’d all sort your situation out. I know you are an atheist, from what I’ve read, but if by chance you get to the other side and find you might have been mistaken, I hope you will send Hill signs. My sweet husband does, still, all these years later. They make my day still, and always will. I send you virtual hugs and love. There is nothing to fear.

  39. Val

    Thank you for your beautiful writing, honesty, sense of humor, and for sharing your passion for life. I love reading your writing. I am sorry to hear about the lousy disease sneaking up more on you, ugh! I hope that you have many more days in the shop and with Hill and others, both here, and in the beyond. Big love to you.

  40. Joanna.

    Hope you are OK. Ez xo

  41. Gillian Caldwell

    Thinking of you from Thailand Ez. If you want to follow family’s year overseas for a brief respite, you can visit http://www.spitzwell.com and learn why you might have chosen to live in a trash dump if you had lived another life, for example. Love, G & Co

  42. Tracey

    Ezra…. How? How do you do this? How do you share these emotions, feelings, disappointments, moments of utter pain and sorrow? How do you find the strength to be so honest? I am amazed by you. I have realized over the last couple of weeks, that I am also put to shame by you…for lack of a better way to say it. I realized I couldn’t do this. I couldn’t share this most personal journey with anyone, let alone people I didn’t know. I am too selfish. And then I realized something really horrible about me. I thought yes, I could share all of these same thoughts, if everyone else were dying right along with me, then I could. I hesitate to even share that, because it’s so awful and yet it is the truth. In my eyes, you are someone bigger than life. Someone I wish I could be like, but would never come close. I know this is a rambling mess. Life is like that sometimes. Take care, Ezra. You have made a difference.

    Sad Girl Out

  43. Paul

    You two have been on my mind quite a bit today. I hope you and Hill are doing as well as possible.

  44. Barb Trushaw

    Oh Ezra, I am so sorry to hear of your newest symptoms…I know you don’t want to self catheterize , but as someone who already irrigates, it would probably be no big deal, especially if it means you can continue to get out and socialize…The catheters are much smaller than the one they had in you in the hospital….just a quick in and out, to empty the bladder, and you’re on your way. I wish I had a magic pill or prayer to make it all better..Your writing is so moving and personal..and you have managed to keep your sense of humor..While I have been through many of the same experiences as you, I could never share on such an intimate level as you have..I have come to admire you so much through your blog..You are very courageous. I’m glad you have a good broad support system..and I hope you know what an inspiration you have been…May your cancer go into remission and give you a break, God bless.
    Barb

  45. minta

    just checking in…. havent seen a post in a while & you all have been on my mind…….sending some warm Arizona healing vibes your way….. <3 M

  46. Lisa

    like Minta, I’m just checking in … to let you know that you and Hill are on my mind as well. Sending both of much love and sunshine from Vancouver.

  47. Lisa

    read… sending both of you much love… :)

  48. Philippe

    Ezra, your creativity and strength know no bounds; you are truly a renaissance man I can’t imagine the pain you’re suffering but you ‘knock it for six’ and humble me. I wish you and Hill the very best, from Hampshire, UK

  49. Paul

    Ezra – don’t know what the items in the photos you posted yesterday 2/4 were but in typical Ezra style they are beautifully shot and presented.

  50. Laurie

    Ezra –
    I just wanted to add my thanks to you for writing all of this — your posts have inspired me to apply for position as hospice nurse — everyone should be as full as life as you are —-I read of your symptoms and then your passion for life and you are still DOING these things you are passionate about—
    INCREDIBLY inspirational — Ezra your life is a total blessing to others– I’m so sorry for all of the pain you are going through
    I hope to contribute to patients care so that they can continue their passions as well
    Thank you again for your writings… <3

  51. sue

    Ezra, I’ve been thinking of you, hoping for the best. I read your blog posts months ago and have not been able to get you out of my mind. You are an amazing man. Hill is a most amazing woman to keep on keeping on. I’ve been a care taker, it is a hard job even when the partner isn’t living in pain. You are in pain and Hill is managing to get thru it. Ezra thank you for sharing your life with us. Hill, I was advised to take all the help that was ever offered, I hope you have learned to say yes to the help. It does make a difference to the way you feel and deal with the pain.
    Ezra, keep on…………

  52. rich

    Ezra (& Hill)

    praying you both are surrounded with supernatural love, comfort and relief from pain as the battle continues. i wish we all could give a fraction of life-time to you which would add up to the time you need to do all you want before leaving earth.

    cancer is crying. Ezra, it’s so wonderful your strong sprit will not succumb.

    IMHO you were created for so much more than life here on earth.

    mahalo, for the courageous sharing, honesty and big loves.

    R in SoCal

  53. Becca

    To you and Hill, Sending warm wishes and peace from a friend on Vancouver Island.

  54. Christina

    Been thinking about you and Hill a lot lately and sending hugs and peace from the west coast.

  55. Paula Hess

    Are you there? How are you? I am thinking about you.

  56. Trevor Saxton

    Ezra (and Hill)

    I came across your blog and have read every entry. I am astounded by the courage, grace and profoundness of your writing and your work. unfortunately, I know all too well the journey that you and your loved ones are on, and I also know that the legacy that you have been crafting over the past 5 years will transcend all of our time on this earth. much love to you and yours.

  57. Rebecca Loudon

    My bus went through Putney last night and I thought of you. And Putney. And Putney.

  58. Val

    Hi Ezra and Hill,
    Thinking of you both. I’d love to hear how you are. Ezra, if you’re not feeling up to writing, maybe Hill could transcribe for you. I bet I’m not the only one hoping to hear from you. Just a thought.
    Sending love your way.

  59. SlowPokePete

    Having awesome memories of summertime riding in the woods of Graham Hills with all of you…

    Peter

  60. Lois

    Thinking of you here in frigid Hamilton Ontario, waiting until the snow melts and I can ride my bike again…

  61. gwendolyn

    missing you, just want to say hi

  62. Sark

    Ezra and Hill,

    You are on my mind. I may not read how you are for days now, but you are present in my thoughts.

    Big Hug

    Sark

  63. Anya Porter

    Thinking of you all every day.

    AP

  64. Colleen

    Thinking of you and yours. Much love. -C

  65. Joan Zimmermann

    Hi Ezra and Hillary- I think about you both every day, sending you Big Love and light.
    Joan

  66. Jill Gatwood

    Love the pictures you posted of the esoteric stuff you work on.

  67. Holly

    Thinking of both of you beautiful people (and the beautiful Putney) tonight. Hope all is as it should be. <3

  68. Renate

    Hi Ezra and Hill and dog,
    you are on my mind.
    Sending my love from Germany.
    R.

  69. Robin

    Thinking of you Ezra. Hope you are having many good days in the shop. Love the metal works taking shape (great photos as always) and all of your recent wood projects. Top notch! Wishing you and Hill a Lovely Valentine’s Day. Hearts and Love your way…⭕❌ Robin

  70. Marta

    Thinking of YOU. Hugs from Copenhagen to all 3 of you.

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