Long overdue update.

 

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I haven’t made a post of any particular substance for a while.  Yet, a lot is happening.  A lot has changed.

Nearly a month and a half ago I landed in the palliative care wing of Mt. Sinai hospital because I had a spike in pain that felt like a real game changer.  I don’t think it’s any coincidence that this happened right around the 6 month mark.  That is to say, the point in time about 6 months after the doctors discovered in a PetCT that my cancer had metastasized and were giving me 6 – ? months to live.  During my stay in the palliative care wing the doctors DID opt to take a look at my pelvis (the area of the most pain) and discovered some very aggressive tumors that had not been there 6 months earlier.  At that point, when asked, they said that we were talking about weeks to months.  Just writing this down – recapping it in this way – is a strangely sobering exercise and is honestly taking me by surprise a little.

I don’t FEEL as though I could drop dead any moment.  I am on a LOT of pain medication, but not so much that I am high or drowsy (though I have to admit that as I sit here writing this..  in the bathroom.. multitasking..  performing my strange gut emptying procedure, and perhaps giving you a little more information than you care to have..  SOMETHING is making a me a bit drowsy).  To the point, though.  I am in hospice care now, and the team that is working with me has managed to get me on a cocktail of drugs that are mostly keeping the pain at bay and leaving me with the energy and the clarity to DO things.  Now that I am better medicated, I am realizing that for quite a bit of the spring I was struggling under the load of a lot of discomfort.  Unnecessary discomfort!  The physical and emotional drain of chronic pain is easy to underestimate and it can grow at such a sneaky rate that you aren’t even aware of what’s happening.

I feel that I should be clear.  I don’t feel GREAT.  I DO get tired, I AM weak, and I DO still have pain that finds it’s way to the surface and can be quite debilitating.  BUT!  For a guy who is supposed to be very sick, I am wildly active!  I’m playing pool most days.  I’m cooking dinner most days (and lately have actually had a big surge of excitement and creativity around it – for sunday night dinner last night, a butterflied leg of lamb with mint and pistachio pesto, with grilled summer squash umami bombs – instructions for the latter coming soon).  I’m dreaming up strange little projects in the shop.  I’m printing and selling photographs at a rate that is leaving me shocked.  Humbled.  Grateful.  Yesterday I spent the day printing/packaging/labeling some 70 odd prints!

I am feeling  sure that I would not be where I am right now if I had gone with the “no brainer” decision to treat my cancer aggressively.  Obviously there is no way to know, but my gut tells me (my poor afflicted gut, which so far has never been wrong!) that had I opted to continue aggressive treatment I’d already be dead.

I have a lot I’d like to say about this.  This is a start.  I am so very happy to be alive.  I am so very grateful to continue to have the energy to PRODUCE.

Hill and I both are feeling as though any fund raising that we do (UTA!!  the auction will begin before too long!  More on that shortly.  And a few other things), and any awareness/advocacy work that we do should be done in the service of raising awareness about a palliative approach to terminal illness and trying to make it an earlier and more natural part of the conversation, instead of simply a last stop before you die.

Perhaps I should start by explaining my current situation.  It’s my guess that many of you have only a hazy idea of what hospice care actually is!  Maybe some somber notion about what happens to you when you’ve decided to just throw in the towel, tuck yourself into bed, and wait for death to find time to swing by and scoop you up with his scythe, or whatever it is that he does.  Maybe you imagine a live-in nurse who changes your bed pan and keeps you company from a rocking chair.. cold washcloth at the ready for your forehead.. maybe reading you Robert Frost poems or something.  * As I write this, I realize that that vision of it may very well eventually be what hospice care IS for me, and it will be really lovely when the time comes!  Perhaps a foot rub and some Chopin nocturnes (eventually I’m going to need a very nice stereo in my bedroom..).  BUT! I’m not there yet.  And that isn’t, by default, what hospice care is.  

I am currently under the care of the in home hospice program of the Visiting Nurse Service of NY.  Theirs is not the only hospice program in the city, but it is certainly the largest.  Once you enter hospice care (and you DO have to qualify to do so..  a doctor has to verify that you have less than six months to live..  I was a shoe in), they take care of absolutely everything.  My appointments with my doctor and my nurse happen here at the house.  They take care of prescribing all medications and those medications are delivered to the house as are all of my colostomy supplies.  That is to say, everyone/everything comes to me.  I do not have to go in to the hospital or doc’s office..  I do not need to wait around in waiting rooms.  There are also NO copays for any of the visits, or medications (and here I should point out that VNS is a NON-profit organization that survives partly through compensation from the insurance companies for the services they provide, but mostly through donor giving).  The other day I spent my morning paying the last 6 months worth of medical bills (I like to do things in batches), and except for whatever stragglers dribble in as the system catches up with my current situation, I SHOULD never have to pay another medical bill!  The doctors and nurses (in fact the entire staff of the hospice program, which also includes social workers and chaplains – they have not sent a chaplain by yet) specialize in end of life care.  The treatment goals are decided on a case by case basis with each patient, but the main thrust of hospice care, of course, is to make quality of life everything that it can be as the disease takes its natural course.  For me, explicitly, the goal of their interventions is to make me as pain free as possible, WITHOUT putting me in a drugged stupor that keeps me from being able to be productive, and even more importantly keeps those close to me from having access to ME.  This goal turns out to be one that can only be achieved with pretty frequent adjustments.  VNS has a 24 hour a day 7 day a week phone line that they encourage us to use for anything at all that comes up.  My angelic wife has done most of the talking on the phone, but it has been her experience that the system works very well.   If she requests a call from the doctor or nurse, she gets one in minutes, not hours (certainly not days).

In short, I am being very well taken care of, and it is happening in a way that takes up an absolute minimum of my time.

I am writing all this down, and recapping it in the way that I am, because I feel as though I have entered a very distinct new phase of  my life.  I have been dealing with this disease for 5 years now (three days from now will be the anniversary of my original diagnosis).  At no point during that time have I felt as though I was out of the woods.  There have been periods of optimism, for sure.  But it has never stopped being the reality that I have a terminal illness.  7 months ago or so it became pretty clear that it WOULD be the thing to kill me.   And more recently, after my stay in the palliative care wing, it became clear that it would probably be pretty soon.

So my attention is on the short term.  I am thinking up all sorts of short term projects.  Things that I can get accomplished in a week or two.  These batches of photos.  Pill flasks.  I don’t want to throw out any sort of one day at a time type cliche, but the horizon is definitely pretty close.   I’m thinking about what little thing to make in the shop after the pill flasks are done, and what amazing meal to make tonight, but I’m not thinking so much about what I’ll make for thanksgiving this year..  and I’m certainly not trying to talk Hillary into having children with me (which for me is the biggest heartbreak of this whole fucking thing.  Really.)

I sometimes wake up in the middle of the night and can actually FEEL the tumors that are growing in my pelvis.  I can feel them pressing on new and different things.. that one is making it harder to pee, for instance..  And in those wee hours of the night I sometimes wonder whether I’ll actually live until the end of the week.  But in the light of day, I am usually on fire!

More soon.  Time to finish go finish up last week’s photo shipping and get down to the shop.

 

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Big love.

Fast Boy out.

 

* addition that I made last minute that somehow didn’t make it into the post..   (along with the bead-pan typo correction.  Sorry gang.)

97 Replies to “Long overdue update.”

  1. Been reading and lurking for some time now, want to tell you what an inspiration you have been to me.
    Much love, Ezra, dear.

    Jewel

  2. Ezra,
    As always, appreciate the updates on your condition. Keep producing, keep staying strong and stay with us for as long as you can. Be well, look forward to your next update my good man.

    A friend you have never met,
    Aaron Ramirez

  3. Damn, humour and pathos simultaneously. Again.

    The VSN system sounds fab. If only there was something over here like that. I probably shouldn’t complain, what with the NHS and all. Sounds as if the former works better than the latter though. In most cases anyway.

    I’m going to make up a hand gesture/symbol that means ‘damn, I have no idea what to say, but that you’re outstanding, inspirational, pretty fucking damn cool etc., etc.’

    I’m doing it now.

    Jenny from across the pond. x

  4. big love back to you and Hill. For what is worth, finding these pages of life, love and day by day discoveries gives new light to my days. so i thank you, both.
    that’s it. just writing down some thoughts. ciao

  5. yeah, I was eagerly awaiting the blog post that said there was a new Caldwell on the way . . . that is very heartbreaking

  6. Dear Ezra , reading your posts is always a special moment . Thanks for your words… Be yourself as you are when keep your friends close to you describing your life… and far readers like me as well.
    Gigi

  7. All along the way, I’ve loved your approach and perspective on everything you’ve had to deal with. You are a person that exudes class and intelligence with every word. My thoughts are when you and Hillary right now. I hope every day you have is filled with love and peace. Thank you for so openly sharing your life all these years, inspiring others, and for doing so with grace.

  8. I’ve never encountered anyone braver or more inspiring than you, Ezra, including your amazing Hillary, and Superdog Putney–and I’ve been in two wars and lost five brave buddies in same.

    Please have someone make a book of your images and postings. Then have me put on the waiting list!

    My wife the nurse has had experience with many hospice scenarios. She admires you for your response more than anyone she has ever attended.

  9. Ezra – you’ve been on my mind and I appreciate your update. So good to hear that hospice is taking good care of you and Hil and that you’re staying busy. Regarding the pill flask – of course I’d like to buy one when they become available, like lots of other people who are in the loop – I was wondering if they’d be stamped or marked at all. Not that you’ve got the time or energy but it’s just a question.
    BIG LOVE back to you and your family and friends.
    Keeping you close,
    Tammy in CA

  10. dying with grace and dignity, on your own terms as much as possible, is a beautiful act. I think you’ve chosen a fantastic cause to devote your energies and fundraising. be well, – Doug

  11. Thinking of you every day, dear Ezra. My prayers and those of my little children are for you and your amazing wife. Hugging you both from oversea, my friend. Buonanotte carissimo.

  12. Dear Ezra,

    My shitty English is not good enough to explain what I feel right now. Because some things are quite difficult to explain, even when you use your native language, to explain your feelings.
    Somehow I fell like a stupid little boy. But ready to make it! Because the stupid little boy is filled up with light and love and I will share your Story and kill the darkness.

    But for the moment: Keep on teaching the fucking cancer to cry!

  13. You have made a masterpiece of your life. It continues and will continue. You have touched many people in ways that words can’t express. You have helped many. Your journey will continue is ways that are inexplicable.
    Thank you,
    Bless you,
    Steve

  14. Heartbreaking…your way with words is as fantastic as ever. Big love to you Ezra. Been watching the duet we did and it brings warm happy feelings, something that will stay with me forever. Wish I could dance that duet with you again! Thinking of you. Cx

  15. Dear, dear Ezra,
    this breaks my heart in so many ways. In life we are lucky to come across bright light people and sometimes we are lucky enough to know them forever. Other times, we pass along but still think of how wonderful the world is with them in it. And when it’s time for the light to go out, it is a loss to everyone. It is devastating to me to read this despite our having passed each other long ago.
    I have all the postcards you wrote me, pictures taken and more than that I carry with me your friendship in my heart forever.
    Take care, know that I send you thoughts of happiness and love, that I send the same to your parents and to Thomas. I’ve always loved your family.
    – Carmen

  16. Thank you for the update since you’re in the thoughts and hearts of so many of us daily. You are truly living in the present and it’s a joy to celebrate your life with you, through your photography and words, you are a gift Ezra, dog bliss you, Putney and Hill

  17. I know it probably shouldn’t be so but there’s something so positive coming from you about one day at a time – living in the here and now. I so admire the way you continue to make the most of every moment. Even more so, I’m glad for you that you have such support around you and that the pain relief us being administered so thoughtfully so that you can continue being “you”.

  18. You never cease to amaze me…. words really can’t do justice to the impact of YOUR words and the way you have shared your struggle… and triumphs .. pain and hope… Thank You.

  19. Ezra:

    One of the things you “produce” is the blog. It has meant a lot to me and others to have you write so well about your life. Your writing is inspirational. It does make a for me and people around me. So keep producing this as well.

    Paul

  20. Ezra,

    I was amongst the group that spoke with you and admired your bike up at Blue Mtn. early spring of this year. At the time your truthfulness and candor of your condition really hit home as I recalled the honesty that my dad battled the dreaded disease. Since that time I have followed you on your FB page and have been blown away with your writing ability and tale. You are both inspirational and graceful while being humorous and self inflecting. Thank you for allowing us to share in your ‘journey’ and I only wish you, your family and tight knit group of friends well. A man is judged by the company he keeps and from what I’ve seen over the past couple of months you are truly BLEESED!!!

  21. Ezra, you were one of the most amazing people I ever knew growing up. I’m so glad that you have continued being amazing. I don’t pray, but what I do do, you’re getting all of it.

  22. I am too at a loss for words to explain what I feel right now. I could say my thoughts and prayers are with you and your loved ones, and they are, really, more than you can imagine even though we’ve never met, but even that wouldn’t really convey all that I feel when I read your posts.

    I’ve been following you for quite some time now, a few years actually, and I feel privileged in a way. You’ve been so open and candid about your illness that I feel humbled just reading you. I’ve learned a lot from you and I can’t imagine that I would keep the energy and level of creativity that you keep showing even at this stage of your illness.
    Ezra, you’re a class act.
    Keep producing, keep enjoying life a day at a time and, please, keep sharing it all with us.
    By the way, I’m pretty sure I’ve put on a few pounds just watching these rather obscene food pictures you keep posting. Please, enclose recipes, you’re torturing us 😉

    mucho ánimo, besos y abrazos desde España

  23. You write so matter-of-factly. I have no idea what it would be like to deal with cancer. I’ve seen many people who have had it, watched them die, but I just can’t imagine what emotions you must be going through. You have such a positive drive though, and it’s what keeps me pinned to your story and art. I love that you are enjoying the simplest of things, the things that are important. It all comes down to sifting through the junk that doesn’t matter and really focusing on what does, and living for that appreciation of simplicity and love.

    Love the dog photos, though I missed picking the one I liked. Sold Out! I’m happy that the photos are selling so well.

    Saw some of your bike videos too with sped up voices. So funny!

    I hope you will be around a lot longer and pain-free.

  24. your spirit, your take, your attitude, everything, makes me feel i need to do far more with my life. that i should not waste as much time as i do. you are my “kick in the pants,” and i am so grateful. i wish i could do as much for you.

  25. All best wishes Zera only if I could help! Have you heard of a diet that cancer cell love glucose so badly you starve them they will die! My wish is that you live to be a hundred. You have imortalazie your self in our hearts and the work you do…. you will live in our memories forever when you gone……

  26. Ezra,
    I appreciate every word you write. Your gut is guiding me. i’m so fucking scared. I’m writing too but I haven’t a fucking clue how to cope – we me, with my disease, with those who love me. I live in Connecticut – went to 4 different hospitals for guidance but my gut told me to go to Johns Hopkins for treatment. Sloan says its in my lungs. My gut is torn on this one. I wish I could talk to you. I am awake most nights, I hate the fucking phone but if you ever feel as though you’re up to gifting a conversation to someone newly diagnosed with rectal cancer, please let me know. if not, I totally understand. BACK TO YOU…. your soul shines through your eyes. and its beautiful

  27. I happened across your blog months back, drawn in by your bike building skills. Your story hit very close to home. I work as a nurse at one of the nation’s top ranked cancer centers. The majority of my patients have stage IV cancer, many of whom have exhausted all the their lines of treatments. Given the nature of my patient population, I have become all too familiar with assisting patients and their families as they transition to palliative care and hospice. I have to commend you for allowing us outsiders to see a glimpse of your life. Your story is a subtle reminder to me that my patients are not defined by their diagnosis. They have lives outside the hospital and separate from their diagnosis. I hope that your hospice care team continues to optimize your medication regimen to allow you to fully enjoy your time remaining. Keep on owning life. Cheers.

  28. Ezra – This is one of the most beautiful things you have ever written on this blog.

    I am sure I am not the only one of your regular readers who is touched deeply by your candor, your continued sense of humor, your love for your wife, your insistance on living each day fully, and your thoughtfulness – taking the time to explain hospice so that we will all have an understanding of how it works so we can make good choices for ourselves and for our loved ones when our times come.

    When I stop crying, I am going to go get some flowers planted in my garden before it gets dark so that I will have accomplished something worthwhile today.

  29. Everything about this post is so humbling and inspiring. I wish you peace in each day and the ability to do what you want to do! You have impacted so many people you don’t even know, thank you for that. Thank you for sharing your life with all of us.

  30. Before he died, a good friend told me “If you have the luxury of asking yourself, ‘Is this the end?’ It’s not the end. You’ll know when it’s the end.” You scared the living shit out of me with that sudden pain spike a while back, and I clutched that quote like a rosary. “If he’s worried it’s the end, that means it’s not the end. If he’s worried it’s the end…” You don’t scare me like you used to. You are more in control than anyone I’ve ever known and while I DO worry that that control can sometimes be a burden for you, you wear it so effortlessly… I’ve decided to just follow your lead. I’m nothing short of giggly about your recent energy surge. GO. Do it. All of it. I can’t wait to see. I still check in on you every day. Every day. It sounds like a lot of us do:) Thanks so much for the update, for taking the time. Big Love XX

  31. You are in our thoughts in our household. About 10 years ago I lost a friend who was only 19 to an aggressive adrenal carcinoma. A lesson to all, live life to the fullest!be happy!love to everyone! Xoxo

  32. Ezra,
    You have positively touched many people’s lives; more than you know. I found you on Flickr 4-1/2 years ago and have been following your stories since then. The things you share have always made me stop and think about my life in new ways. For some reason you frequently come to mind during my cross-country bike rides through Maine forests. I have imagined that I am sharing those rides with you somehow. I never contacted you before because I could never think of the right words. Which I realize now is just stupid, so I’m telling you now. You are much loved.

    Tom S., in Maine.

  33. Thank you for writing this and opening it up to the world. I work in palliative care (not hospice). I hope one day patients, families, and healthcare professionals will understand palliative care’s role and benefits in early treatment. We can’t help people we never see and we can’t give the full scope of our care and expertise to people we meet too late. Your words are seeds for change. Thank you. Also, I’m glad you have hospice looking out for you, I would pick them too.

  34. So much love here for you and your family. I know folks who scoff at the ‘virtual life’ of internet connections, but I know absolutely that the love, compassion, and grace I feel keeping up with your life and all that you create is a real as the walls that surround me and the brown-upholstered cushions upon which I sit.

    I wish it were all otherwise, of course, but since it’s not I watch and feel. Wish I could do something magical for you, Ez. Thank you for you.

  35. Ezra, I have been following your posts for a while, and am so refreshed by your honesty..I have just completed surgery and chemo for ovarian cancer….but have also been through non-hodgkin’s lymphoma and breast cancer. I feel fine now, but am well aware of what probably lies in front of me, and at times become depressed. I know none of us gets out of here alive. Ezra, you are my mentor….to live a full, rich, productive, loving life as long as you are able…. I will always cherish your words, especially today’s post. Thank you for your true reality check. You have done what we all hope we can do….made a difference. I thank you for that & much, much more.
    P.S. (tongue in cheek) Do you have time to assemble a cookbook? Please??

  36. You write with such clarity – you are definitely all here! Thank you for your honesty – always your honesty. Sharing so much – you are so generous with us and I hope you feel the love that you have sent out into this tremulous world coming back to you a thousand fold! You make me want to be a better human being, in this day, in this moment. Thank You from the depths of my heart! Keep it all coming at your speed man – LOVE

  37. Sending thanks and love. Thank you for being so brave and strong and true and heartbreaking and inspiring, and thank you for giving so much of yourself. Hugs and love from Southern California, compadre. There is so much love out here, winging your way.

  38. Ezra,

    Everything i would write would not be right.
    My thoughts are with you.

    Your posts inspired me and the current one left me in confusion.

    A big hug (and tear) from smallville Germany

    Sark

  39. I totally support the idea of the book.

    And I am one more of the voices that echo “thank you, thank you” for being brave enough to share your tortuous journey so full of lights and shadows with us.

    You are a creator and a teacher, because you are always creating, and will always be teaching great life lessons.

    Much love.

  40. I wish for you only love and admire how you have chosen, not only how to live your life, but how to leave your life as well. Hillary is an amazing woman and you two are certainly blessed to have each other. {{{HUGS}}}

  41. Is it pathetic to say “Thank you, Ezra!”?
    Fuck – I don’t care: Thank you, Ezra!
    Love, strength and courage to you from Berlin, Martin

  42. Hi,Ezra
    I just wanted to say that i came across your amazing site and wonderful life by sheer chance and it has brightened my day and life with every post i have read.
    You are a true saint with how open you have been with the fight you are so bravely fighting and i commend you with all my heart and soul.
    You are a wonderful person with so much love for everything and i visit the pages each day to get my inspiration, we all carry on with each day and we feel its the worse day ever !! and you are there with the most wonderful smile and fight..
    Thank you from the bottom of my Heart and soul and i know it sounds stupid wish you all the best you are a star that will shine bright in the years to come.
    Love to you Hill and Putney
    Dave& Gaynor xx

  43. Wishing you love filled days and nights being with the people (& dog) that matter most and doing what you enjoy. You are amazing.

  44. Ezra,
    I’m sending you all my best thoughts and white light every day. You don’t know me obviously, but you have inspired me and helped me to look around me to see the world with new eyes. Your kindness and joy have touched me deeply.

    There is so much left to say, and no way to say it all.

    You don’t know me, but I know you, and I’m a better person for it.

    Holding you in my heart,
    Ben Vaughan

  45. Ezra…the fucking incredible perspective you have given to those lucky enough to come across your amazing words and images is a gift beyond gifts. I am so very grateful that I clicked on that link someone shared one day that brought me to you. You have made me appreciate every moment I have and let go of A LOT of meaningless bull shit!!! So much light and love to you, your Hillary, and Putney. Really, from the bottom of my heart…thank you.

  46. Ezra,
    Even though we’ve never met in person I’m proud to call you a friend. Great to hear you are still getting shit done. As a fellow “maker” I know how important that is. You are the boss. Hope we get to chat again. Give me a ring if you get the chance.
    Best,
    Tony

  47. Wishing you all the best on your journey.

    I wanted to let you know about Essiac in case you have not heard about it.
    I have told many people about it and it has worked for many.
    20 years ago I asked my doctor about it and he said he had a patient that had terminal cancer and nothing more could be done. The patient took Essiac and the doctor could not believe it but all of the tumors disappeared. My doctor went on to be a research at a renowned Cancer Clinic.

    Anyway thought I would put it out there just in case – well you never know

    There is lots of info on the net but remember if you try it get the original.

    The Kennedy Family has even used it.

    The herbal mixture Essiac has become one of the most popular forms of alternative and complementary medicines for the treatment of cancer in the past century. Originally discovered by a native Canadian healer, the formula was adopted and promoted by “Canada’s Cancer Nurse,” a woman named Rene Caisse, starting in 1922. Multiple laboratory studies have shown that the individual herbs contained in Essiac — Burdock root (Rheum palmatum), sheep sorrel (Rumex acetosella), slippery elm bark (Ulmus fulva), and turkey rhubarb (Rheum pamatum) – have numerous biological effects, including antitumor, anti-inflammatory, antioxidant, and immune boosting properties when tested in standardized, controlled laboratory conditions. However, no compelling clinical evidence has been obtained to support the use of Essiac as a treatment for cancer. Instead, most of the evidence supporting Essiac in cancer treatment stems from individual case reports.

    Thank you for sharing your thoughts and life with us. You are amazing!

  48. Ezra, my wife and I have been following your site and posts for a long time and you have always amazed and inspired us with your forthrightness and intellectual honesty. You and your wife are in our thoughts and we look forward to reading many more posts.

  49. Thank you Ezra for this very detailed post. It always helps us to have a clear picture of what’s going on with you.
    I think we need a lot more Ezra Caldwells in this world, you are an inspiration and a most amazing man.
    I am sending healthy and happy thoughts to keep you well.
    Do you still dance with Hill? Dance happy.

  50. Thank you so much for posting all of this……I am a 56 yo RN who is really inspired re: moving into hospice work….and this is incredibly inspiring……..I am especially inspired with:
    any awareness/advocacy work that we do should be done in the service of raising awareness about a palliative approach to terminal illness and trying to make it an earlier and more natural part of the conversation, instead of simply a last stop before you die.

    Thank you again for all of this….I think your work will be pivotal in moving things forward this way …..

    Love and blessings to you and your family–
    laurie

  51. Thanks for the update Ezra. Your honesty and matter-of-fact approach is refreshing. So glad to hear of the good work hospice is doing. Touched by your sharing and giving us (many total strangers) an insight into your life. Keep creating and sucking the juice out of the hard stone of life. Love

  52. I feel as though you should be in touch with deathoverdinner.org folks. The talk of dealing with end of life care/reality of death (with friends, over great food) sounds like it would be a match.

    Much love and prayers.

  53. ezra,
    it’s quite a challenge to just leave a comment here, to reveal oneself in a way, to have accompanied you, however, not knowing you physically. thus, i can only see now how much you actually have shared over all these years. so many things to be proud of, so many things that other people would have been embarrassed of, so many things so many people all around the world suffer from.
    thank you for letting me and all the other readers take part in your journey and thank you even more for this, your precious digital legacy.
    such a lovely and beautiful new portrait! You really look like a man there who has made the right decision.
    I will share your story when one day I’ll become a teacher for healthcare and till then will keep stopping by, hoping you’re good wherever you are.
    sending you the amount of light that sets you on fire during the day and helps you to get through the nights.

  54. not to trivialize, but I love your ‘instructions for cooking’ and am excited for summer squash UMAMI BOMB guidance…bring it.

  55. Thank you Ezra. I’ve been following your blog for a few years now, (recommended by a mutual friend)but never thanked you. I have so much gratitude for your hard work and creativity in sharing your life with us all. Much love from all of us in Seattle who are reading your story and enjoying your beautiful photos. Produce as long as you can!

  56. As a fellow Stage IV cancer patient, I think about you a lot (which, crazy, because I do not know you) and wonder if/when I find myself from where you are in the road, will I seem so brave and calm? I also will not be able to sleep tonight if I don’t ask you to take turkey tail mushroom capsules. They cure cancer in dogs (the AKC even says so; my mother fed it to her dog with large tumors and they all shrank quite noticeably) and the mother of this mycologist guy who makes the brand sold at Whole Foods and Vitamin Shoppe (Paul Stamets) had the second worst case of breast cancer her oncologist had ever seen… and was cured. He did a TED talm about it. There. I said it. Now I can sleep. Good night, sir.

  57. Are you familiar with the Russian film director Andrei Tarkovsky?
    He directed the original SOLARIS. His film IVAN’S CHILDHOOD
    is visually stunning and deals with life and death issues in a powerful way.
    He also was an outstanding photographer….check out his polaroids in the book
    INSTANT LIGHT. The book has a lovely commentary about Tarkovsky’s own
    suffering with cancer and early death.

  58. I’m not the kind of person who usually writes comments on blogs or whatever, but I just wanted to tell you, Ezra, how much I admire you. I can’t imagine what you’re going through, but I already feel liek I know you and Hill. Send you both lots of love from Argentina. Stay strong man, we have your back

  59. I have to keep an eye on ezracaldwell.com because I have missed out on the photos I like so far… 🙂

    Your courage is inspiring. I know that’s kind of a trite thing to say, but when my time comes, I hope I have even half your spirit and grace.

  60. Thank you for sharing, Ezra. Looking forward to receiving my print that is probably in the stack in that photo.

    Pistachio and Mint Pesto, you say?

    Best,
    Fooferkitten

  61. If you could make all your blog posts into book form I would be buying. As you write them and with pictures.
    You are an inspiration and I would only wish for half your courage faced with your situation.
    xoxo

  62. I just wanted you to know you are in my thoughts. I can’t believe I have been following you on this journey from day one. Five years seems like forever ago. All of this just completely breaks my heart. What I want to thank you for, is for always putting things into perspective for me. Every day I simply wake up I need to be grateful for just that. One more day. Sending you and your sweet wife and puppy love. xoxo

  63. I send you and Hilarry and Putney a big hug with all my heart and also a very tight one to your mother and special Ed.
    I wish that every single moment of your life you’ll feel the love you have awakened in so many people all over the world.

  64. Thank you Ezra for showing me that hospice is everything I thought it wasn’t. My next donation to a hospice organization will be much larger than what I have given in the past because of your writings. My thoughts and prayers to you and your family and friends.

  65. This moved me, and will likely nudge my future (for futures are usually difficult to change more than a nudge at a time) in a way that few things do. Thank you very much for writing it.

  66. Thanks for posting this Ezra. I’ve been following your blog for a while after stumbling upon it haphazardly from a food photo search a few months back.
    Palliative Care is wonderful and I’m thankful that you were able to so eloquently describe what it is, for the lay people who have never had the good fortune of being intimately involve in the programs.
    2 years ago a good friend went the same route you chose after many years of treating an aggressive colon cancer, when that fucker returned (the cancer, not the friend) in his stomach wall, he opted for palliative care and had great days for many months. It wasn’t a throwing in the towel as some saw but time to take a different path. One year later my own son (an Ezra as well) became sick, he had a life limiting congenital illness and we knew that it was time for a different path. With kids, where we are, they don’t call it palliative care, the program is called symptom management program. While the team is all physicians nurses and staff from palliative, their focus is not just end of life care, but care while you’re living, ensuring that life is being lived. He passed away this past February, 9 months later. He was never alone. I was never alone. Neither will you, or Hilary. We all have to leave this world eventually, thank you for beig fearless and frank in your writings about how to do it so eloquently. As we amble up another hill, with another family member being diagnosed with an invasive SCC of the nether regions earlier this week, I’ll be holding you and your blog in my heart. Xxoo

  67. mind heart body hug and big love back to you.

    it has all been said above. you are a bright light in the world. your love for life and the grace with which you have navigated great difficulty make you an inspiration to the race.

    Godspeed.

    Sam

  68. I so love you Ezra even though we have never met. You and yur words and your life have profoundly changed mine. Big Love from the mountains in Northern Nevada!

  69. Ezra, I recently came across your blog via Angelo Merendino’s Facebook posts about his wife. Aside from the obvious wishes – that neither you nor anyone else had to go through what you’re going through – I really want to thank you for sharing your story with the world. And for being so optimistic about squeezing every last drop out of this life as is possible. As I’ve read through your posts, and particularly your more recent ones, I’ve felt like you’re doing a tremendous service to who-knows-how-many people out there, spreading this great message of making the most of the time we have, and try to find the positive even in the most negative of situations.

    I wish you peace and as little pain as possible, and whatever is waiting for you on the other side, I hope there’s such a thing as good karma. Because you’ve put a $#@!-load of good karma out there, brother : )

  70. another stranger who loves you. also? hospice is one of the best things humankind has cooked up. one of the most sane and humane.

    thank you, ezra. bless you and all you love.

  71. You truly are an inspiration and have been for many years.. i keep stopping by here to see how things are with you and Hill and Putney and i’m always amazed at how much you have going on !!

  72. Ever so happy to make your acquaintance, Erza. So very sorry to meet because of your circumstance, though. I feel so much peace reading about you and your wife’s decision, along with an actual feeling of envy. My husband was diagnosed at stage IV two years ago. He has been on constant chemo, radiation, or steriotactic radiosurgery the entire time and he is worn. His pain is not managed well at all. I am wishing and praying for a place of peace for him, where he can go about LIVING the time we have left together, as opposed to fighting death. How very wise you and your beloved are.

    Sending you all of my love on the wings of a desert sparrow,
    Deborah