film is not dead

 

horse

 

 

I’ve been getting emails from some of you recently asking how I’m doing (thank you).  I realize it’s been a minute since I wrote anything up here, and the last post was a bit of a handful.

The last week has been good though.  Busy but good.

My hospice doc, Dana, is amazing.  She has given us the kind of access you might expect from a close friend, not a doctor.  And her knowledge of what happens to the body as it succumbs to disease is profound.  The way she examines me,  the questions she asks, have been deeper and more intuitive than anything I’ve encountered throughout the process of dealing with this disease.  It is clear that she understands things that many docs don’t want to deal with.

When she came to check me out, she reassured me that what I was seeing was not, in fact a tumor..  it was a lymph node that was a bit swollen, but not hard and immovable the way it would be if it had a tumor in it. It was being pushed out most likely by tumor tissue growing in my pelvic bowl BEHIND it. So I am not looking AT a tumor, I am looking at something that a growing tumor has pushed into a different place. A semantic distinction maybe, but a comfort nonetheless.

Sadly, I am SEEING the progression of this disease.  With that seeing, I have to admit that I am FEELING the progression as well.  I am still on fire.  I am still on an amazing creative high.  I’m taking tons of photos, and am wildly involved in preparing for next weekend! But my level of pain has gone up a bit.  I have been needing more breakthrough pain meds.  And I haven’t had quite the same level of energy to push through the day that I did a few weeks ago.  (This weekend, in fact, I will be making a switch in baseline medication just to be sure that when the pain gets worse as it is likely to do, I will already be on something that can handle it.  That something being methadone!  Big guns, gang!)

I wake up early.  And I cherish it.  But by 4:30 in the afternoon or so, I wish the clock would stop so that I could put on some headphones, listen to Steve Reich, and let it drop me into a DEEP sleep for a few hours, and then wake up without the TIME having passed, so that I could get up and keep rolling!  Doesn’t work that way sadly.  The clock keeps rolling whether you’re busy or on your back.

In just a week, the hand built bike show will be happening out in Brooklyn.  That’s sort of the next big horizon.  I’m working on a display.  I’ll be showing three bikes.  I’m going to resurrect the Assless..  it will be there!  For you to see in person.  The build that made its way from the Assless to the Hardass will go BACK to where it belongs and the Hardass will get a brand new build, so that it can be at the show as well.   I am considering auctioning off the Assless.

Ok.  Maybe I need to back up.  INTERLUDE

All along the idea has been that the UTA (the Ultimate Tight Ass..   Ass bike #3 in this little series, which of course will ALSO be at the show) would be auctioned off when I am no longer able to ride it, and that the money would go to “cancer.”   It was never clear where exactly that would be.  I had been thinking cancer research in some way.  But as I spoke with people and did a little research, I simply couldn’t land on anything where it felt as though the money would make much difference. It would be a little drop in a bucket by the time it got to the people actually doing the science.

Since my sudden emergency stay in the hospital a few months ago, my thoughts on this whole matter have shifted and clarified. I was introduced at that point to palliative care in general, and hospice care in particular.  For those of you who don’t know what that is.. many don’t, palliative care is a model that focuses first and foremost on the patient’s immediate quality of life.  Now, as a philosophy of care, this seems to me like a bit of a no brainer.  I mean, shouldn’t that be the goal of medicine all the time?  It isn’t, though.  Even illnesses that are acknowledged to be terminal, in all likelihood, tend to be treated aggressively with a focus on extending life. This aggressive treatment often happens in a way that accepts a great deal of pain and suffering on the part of the patient as a necessary cost for a potentially “better” outcome.  The goals really are quite different.  Palliative care assumes that, especially if your condition is terminal, the focus should be on staying pain free and energetic for whatever time you have.

Not all doctors take the aggressive route. Nine months ago, when I told my oncologist that we had decided not to pursue further treatment, he said, “Okay  That’s fine.”  He was happy to keep following me and from there on out,  he more or less took his cues from me on prescribing the meds that I needed to stay comfortable.  It was a relief not to be under pressure to do chemo. But in retrospect, I realize that he brought no real expertise to the table in terms of pain or fatigue management. It wasn’t until April that he finally suggested that I might like to talk to a palliative care specialist.

Once I WAS hooked up with palliative care, and ultimately hospice care (end of life palliative care), I realized just how much could have been done for me during those winter months – by bringing that aggressive medical world attitude to pain management.   I have felt far better since starting hospice care than I did all spring.  I am energetic, I am mostly without pain, I sleep well (despite the urge to get up the moment I’m awake so that I can start getting things DONE!), and I do all of this without having to make trips to the doctor or to the pharmacy.  All of my medications, delivered to my door, are covered 100 percent by hospice. There are no copays for the doctor’s home visits and no waiting rooms) and as I’ve mentioned, my doc is available!  In most respects I am feeling the best I’ve felt in the last 5 years!  I owe it entirely to hospice, and this palliative approach to care.

The fact that palliative care is not more visible and better integrated into the mainstream medical system is mysterious and troubling. Why do these two approaches need to be separate?  Why shouldn’t a palliative care team be involved from day one?  When you are diagnosed with a potentially terminal illness, it could be routine procedure to meet with a treatment team AND a palliative care team..who work together.. to see if they can beat the disease and at the same time keep you happy and comfortable and productive.   This is stuff that really touches a nerve for me and it gets  right to the heart of the philosophy of care and the education of our docs, NOT TO MENTION the education of the public about what is available to them in terms of treatment models and approaches.

All that to say.  Hospice care, the Home Hospice Program of the Visiting Nurse Service of New York specifically, has done an amazing amount to make what are probably my last months not just bearable, but wonderful!  They are a non-profit organization.  The care that they are giving me is NOT entirely covered by reimbursements from insurance companies.  They end up covering a fair amount themselves, and they survive through the generosity of their donors.

I plan to be one of those donors!  It is important to me that they be able to continue the work that they are doing.  I have also been looking into ways to help advocate for more awareness of what they do.  In an ideal world it would be mainstream —  something that everyone was offered and had access to, and that was fully covered by insurance.  In the mean time, they need the help.

SO.  That’s where the money is going.  The proceeds from the auction for the UTA will go to them.  AND this idea that I’m toying with..of auctioning off the Assless (who on earth would WANT that thing…), would also be done in the interest of raising them a little money.  Perhaps you all would like to weigh in.  Give me your advice.

Now.  Where was I?   END INTERLUDE

 

So that’s the show.  The three Ass bikes will be there.  I feel as though the three bikes tell an interesting version of the story of my last 5 years.  Becoming a bike builder, getting sick, having to ride a bike with no seat,  getting better, getting sick again, changing doctors, starting to ride the hardass, the hardass taking me to the woods!, the dreaming and scheming of the ultimate mountain bike, getting sick AGAIN – this time in the way that you don’t get better from – and deciding to drop what I was doing and go ahead and BUILD that Ultimate mountain bike (Ultimate, the word, suddenly taking on new significance).  And all of this with unwavering support from the bike world – from the very start with the Assless, parts being donated by the companies that make them, simply to show solidarity and support.  And finally this hand built bike show being dedicated to me! and a percentage of those proceeds going to the cause that I choose.  The whole ride has been pretty magic.

 

I have been dallying on putting up a set of photos for sale this week.  I’ve been very excited lately about shooting in general.. but particularly shooting medium format film.  The response that you all have given me to the photos for sale has been a real boost.  This last week has been a busy one, but I will get pictures up in the daily photos any minute now..  I’ve got a bunch from recently developed rolls of film..  there’s just the added step of scanning!

This week, for sale, I’m offering some medium format images of Putney in her three places, Putney Vt, Nova Scotia and Harlem, NYC.

These are images that I chose because I feel that they belong in print.  Medium format film really is magic.  Whenever I shoot it and scan, I wonder why I shoot anything else.  And then I remember the speed and convenience.. the size of the equipment.. etc.  BUT.  I intend to be shooting a lot more film in the weeks to come, and in the meantime here are three shots from the archives (one never published anywhere before) of one of my favorite muses.

Fewer choices than previous weeks, but more prints available of each.

These prints are also quite a lot bigger than I have been printing.  To really appreciate the detail of these big negatives (or transperancy in the case of the nova scotia shot), you really need to look at them bigger!

Enjoy!

 

Hill’s new bike is here.  I’ll assemble it tonight, and we’ll ride tomorrow.  Life is good!

 

Thank  you all.

OUT!

 

 

42 Replies to “film is not dead”

  1. First of all, so glad you’re enjoying life Ezra, I’m so enjoying your photos, all of the special moments you share with us.
    With the money-raising in mind, I wondered whether you’d consider a book, or a series of books? I’ve been lucky enough to grab a couple of your prints but I’m sure there will be a lot of people out there who have not been so lucky and would jump at the chance. This could be a steady stream of income to your charity.
    Food for thought? And by the way, I love the food photos and drink shots, maybe even as much as the bike ones!
    Big love – David.

  2. Wholeheartedly support the donations to your local hospice group. (I have twice ushered loved ones through a hospice program, and I can only say that not all are as good as the one you describe. I’m so glad that you got a good one — it sounds amazing, in fact — and I think the “good ones” in whatever field should be supported and encouraged.)

    Also love David’s idea of a book. In the meantime, I’ll be anxiously awaiting my Putney photo. Thank you.

  3. Great to hear from you. And I wholeheartedly support everything you are saying about palliative care and hospice programs. I know from first hand experience how life changing (in really positive ways) they can be for patients and the people who love them.

    There seem to be so many of us out here in the “stranger yet virtually connected” world who want to support you through all the work you are producing. But perhaps there is a way we could do that without you feeling like you have be constantly producing photos or flasks or bikes to do so? Might there be a way that you could establish a fund in your name with the program from which you’re getting such great support? I would very happily donate to such a fund. And while I’d gobble up a flask if that happens, and love my Putney photo that’s in my office, I’d feel generally better about showing my support for you in a way that doesn’t require exertion on your part these days. Just an idea…

    Thanks for continuing to allow us all to follow your journey.

  4. This might be the second time I post something here, mainly because you always leave me speechless. I’ve been following you from day one and I am in awe of you, your creativity, your authenticity. You are one hell of a person and I hope you realize how many lives you have touched, and changed. Elizabeth’s idea of a fund is a great one and I am sure a lot of us would love to contribute to it. Big love to you and Hill from a perfect stranger.

  5. one of your best entries ever. thanks for the education on patient care. i learned something today.

    and so neat that you know tegan or sara…not sure which!

  6. Wish every cancer patient could get the kind of care you are getting. Not all hospice services are as good as the Visiting Nurse Service of New York. There are some pretty bad ones out there and in many hospice organizations you are required to give up your regular docs (so no integrating the treatment team and palliative team as you mention). And unfortunately there is a profit motive for some organizations since hospice is paid a flat fee per day for the care they provide. Less care=higher profit. I know you’re too busy to read this, but for others out there “The Coalition to Transform Advanced Care” (google it) is working to transform advanced illness care.

  7. I wholeheartedly agree with Elizabeth on the fund, and with what she says about your exertion to produce, especially the flasks for those who want them. I know they mean a lot, obviously, to those who bought and want them, but I for one am starting to see the requests for them as a bit selfish or unseemly.

    Thank you for your words. They have been an immense gift.

  8. he hee I Love that you love Steve Reich. “You Are Wherever Your Thoughts Are” Even your music favorites are minimalist. I love it:)

    Give Dana a hug for me. She sounds brilliant. a godsend. Thanks so much for the update:)

  9. You have taught me to look at life differently. You are “there”, where others fear to be, and you are going through the experience that no one wants to have. And yet, you are teaching the greatest lesson anyone could ever hope to learn. Life indeed is good. It’s beautiful. And it’s NOW.

    Thank you, from the bottom of my heart. To you and yours.

    Much love.

  10. By the way, I realise you’ve probably been told this and perused this, but have you considered hemp oil? there’s nothing to lose in trying. I’m not suggesting this as a cure, but it could potentially lenghten your life. In any case, it is harmless.

    I’m sorry if you find this sort of advice unwelcome or tedious. But it’s worth a chance.

  11. Ezra…after last week’s post, I’ve been wondering about you all week. I too, am a perfect stranger. I have told so many people about you and in fact I wish I had little business cards with teachingcancertocry.com printed on them to hand out, because your words are a gift it seems to anyone who happens to read them!!!! In my humble opinion, the assless bike belongs in a museum dedicated to your work as a bike builder along with your photographs and writings. I wish I could set it up for you! Big love to you guys and big big gratitude too. Namaste.

  12. you have been more alive and given more to this world in the last 5 years than most people could hope to in 5 lifetimes. thank you for deciding from day one to document your journey. you are giving this world an immense treasure of beauty and wisdom.

  13. I think that the Visiting Nurse Service idea is BRILLIANT! I (alas!) do not have the ca$h money to bid on the UTA, but I will make a donation to them in the amount that I can as a proxy bid on human goodness.

    Can’t wait to see pics of you two on your rides together – so exciting!

    Lots of love and Light to you,
    Biryanilady

  14. What everybody here has said is what I also want to say. Especially about admiration, thankfullness and good health wishes. Also about bike
    belonging in a museum.

  15. I realized just how much could have been done for me during those winter months – by bringing that aggressive medical world attitude to pain management.

    Those are your words Ezra but I second them. I think some people would be astonished if they ever saw or understood the depth and breadth of pain that too many people suffer on a daily basis. It astounds me that these same sufferers/survivors not only live in this extreme way every day, but that they will fight to live, even as compromised by pain and anguish as they have to, and for this, they deserve our efforts to find a way to make their lives, your life, easier, less painful, better. Thank you for speaking up about all of this.

    And thanks for checking in with all of us again. We know the bike show awaits you, Hill’s new bike awaits, Putney, and fortunately–you keep showing up!!! I’d say take your dog and pony show and go, go, but you’ve got Putney so who could ask for more?!!

    So glad you’re feeling good, be, do, as you feel!! XO

  16. since I’ve had a few hours to digest your words / we talked about you at dinner. I was actually kind of shocked – everyone around the table had a different cancer story. Young cancer / old cancer. Relatives and friends. But to a person, every one of us HAD a cancer story and every one of our experiences was either aggressive medical care or Abusively Aggressive medical care. Five people and not a single one ever had a discussion with a doctor – or a discussion with a loved one – about anything else. How astounding is that? We all agreed that “bringing the aggressive medical world attitude to pain management” is something… we had never even thought of before. A succinct, easy to understand and transformative approach to combat the norms of cancer care, which in light of our collective experiences and your recent descriptions of Dana / the whole home nurse program, makes my chest ache with thoughts of what could have been… Leave it to you to take something huge and chaotic and fraught, turn it on its head, pull out its core and say “Here. look at it this way…” keep talking please

  17. Hi Ezra. I just discovered your blog yesterday and couldn’t wait to read it tonight. Thanks for reminding me to get off my healthy ass (what are a few hemarrhoids, or however you spell it?!) and make the most of every moment!
    Did you live so vibrantly before you became ill?
    I live in New Zealand and we have hospice services here, and the ones I know about are all amazing, and similarly free (mind you so are our hospitals). My local hospice is my no. 1 charity to give to. Great choice.
    You write beautifully.
    Best wishes Ezra, wishing you another great day tomorrow. Andrea x

  18. Thank you so much for sharing your perspective. I’m going through surgery/chemo/radiation/adjuvant therapy/pills/blah blah blah too. You have helped me tremendously.

  19. You are wise beyond your years, Ezra. Your blog reminds me to live in kairos time, not chronos time. I snagged the Putney/Gen. Grant photo for my hubs, who grew up in Harlem in the 40’s & 50’s. He is living with cancer and striving to make each day count. Thank you sharing your journey.

  20. A friend of mine was put on methadone for cancer as well before he went to stay in a hospice and the change between him from one day to the next was miraculous in that he wasn’t feeling any pain for the first time in ages.

    It really was a good choice to go on it as no doubt it will be with you.

    Do whatever makes you feel good!
    Dont hold back…………just enjoy yourself!!!!!

  21. BRILLIANT post with regards to why you believe the money to donate should be put through the palliative care/hospice route rather than just another cancer donation whereby a small percentage will actually make it to anyone in need but rather just pay the salaries of those running the charity.
    Thats my thought about charities.

    In any event, I myself am now going to have to do some research as I am located in Toronto and have a superior health care system to the US in that most of our needs are covered. But even then I do agree that palliative care should be given so much sooner, when you could have made great use of your energy, as you have stated, such as last winter. Its a shame you had to spend any time with a loss of energy and living to life’s fullest.

    In fact i think that this is an area that should be brought to more peoples attention…….

  22. hi.

    i work in medicine and have for years and the MOST worthwhile and wonderful thing i’ve come across since my first experience with it back in ’92 IS hospice and that’s because it’s human beings at their best best.

    i support hospice. i love hospice.

    big love to you guys. big love.

  23. Fun to see one favorite read, mention another: http://benhewitt.net/
    Ben said some nice things about you, which sum up a lot of what i love about your photography. Its appreciation of the moment. The right now. Especially lately, in the woods, playing pool. You’re there, and deeply appreciative. My grandfather’s last fundraising project was the hospice he and his wife used. Built it from scratch- such a beautiful contribution to the world. I’m so happy you’re benefitting as well.

  24. maybe wrong, but i think you just might make it by shear force of livin’! man o man, are you on a roll, fast. just keep on goin’ to be early and gettin’ up early and doin’ what yer doin’! my bet? i’m bettin’ on you. fuck cancer. yer ezra. bigass love from boston.

  25. Ezra, it’s going to sound a little odd what I want to share here with you, but I met the most wonderful woman ever. I’m in love with her, she is the most amazing, beautiful, whole-hearted, wise woman I ever met in my life. But, here’s the catch, she’s German and I’m Mexican, we met here in the US and she has to go back to Germany soon, in a a couple of months. I have this sense of uncertainty, urgency to live each moment to the fullest. I want to burn the sound of her voice in my memory, the look of her face, the touch of her skin. This whole thing took both of us by surprise!
    Reading about your story makes me look at things from a very different perspective, it’s helped me take a harder look at the things that really matter in life. I want her in my life for more than just a couple of months. I want Ms Piglet in my life for the rest of my life (that’s her pet name :P). I’m willing to turn the whole world upside down just to be with her, that’s what matters to me more than anything else. Wish me good luck brother.
    Big love from Texas!
    Rod

  26. Fanastic post. Stumbled across your blog last week via Ben Hewitt. Have read the last 9 months in 1 day, and am simply amazed by your voice. This post was especially touching.

    I work in healthcare and have always wondered why pallitive care and hospice are things not discussed more openly. why people are so quick to spend all of this money on extending life, when really we should maybe be looking at other options?

    Thank you for choosing to spend your days creating more art and choosing to share it with the world.

  27. Ezra,
    I’m another Ben Hewitt reader who followed the link to your blog. I’m also going through the madness of cancer. My doctors want to hold hands sing kumbaya and tell me everything is going to be ok-all I need to do is another round of rat poison, more mutilation followed by burning. Your honesty and openness has helped with a lot of decisions. Thank you.

  28. “The fact that palliative care is not more visible and better integrated into the mainstream medical system is mysterious and troubling. ”

    I will shout this from the rooftops. When my mother chose to stop treating her cancer many of her doctors and nurses seemed offended, insulted even. When the palliative care team came in it felt like, finally, my mother was getting treatment and not the cancer.

  29. I’m thrilled with your donation decision! We too often forget death is a part of life and we all need some support when the time comes…your “slow dance with death” quote sticks with me in a beautiful way.
    I was first introduced to palliative care when a good family friend co-founded George Mark Children’s House here on the west coast in Oakland. It was a rough start for them, but the need is so great. Thank you for spreading the word about palliative care!

  30. BRAVO!
    Ezra…what a great name especially since it identifies
    with an old period of history in that the book of Ezra as well as
    Nehemiah…records how to overcome: you sir have displayed
    the very epitome of being an over-comer! Again Bravo! I too
    have have ventured through this journey of what our modern world
    has coined as ‘cancer’ and although different yet the same…but here is where
    I drop my 2-cents to you. Perhaps you have ventured here already but when I viewed your images (beautiful by the way) I was reminded about the importance of the horizon…even when you were on the edge of the seat on your way to the doc’s office and the doc declared not to ride: you went beyond the horizon of what we knew as so common a place that a bike must have a seat…
    Oh really said Ezra (i’m just guessing how this played out in your head); and
    sharing this to bring our persons…all of us and because of where you are
    right now at the very edge of the horizon of physical life itself…this present
    at the edge of physical life is but the place where just over or beyond the horizon…awaits the very spirit or breath of ones life form. It is here and historically from where Jesus comes in along the time line of things…
    so just like you would check the tires and spin a wheel to see if the positioning
    is good between the fork…or the quick look over your shoulder before you go:
    just to be sure it’s good to go. I hope and pray that you would consider
    the making ready for whenever the trip above and beyond the horizon comes?
    Already you have gone much farther than envisioned and I believe it has been allowed so you too could prepare… it’s free. it’s simple and best of all what have ya got to loose? I even bet ya already know how to just be still and focus
    from the inner most depths of your inner man…I just know ya know ;and
    with this and I remember how I simply said I know Lord that you are there for me
    I just know and in this knowing I’ve been way to busy to realize just what you did for me…well over two thousand years ago. But right now I’m gonna simply
    accept the fact that you did do your thing on the ol’rugged cross for me…
    forgive me for not recognizing, not being aware but I’m suddenly aware that I’m at the very edge of eternity. I give you me…I’m going to rely upon the fact
    that everything as recorded about you is for me…I’ll trust you as the EZRA
    you made and allowed to be simply to be here and Now…I’m yours Lord
    I want to be ready for the next part of life above and beyond the horizon
    where we as mortal man cannot presently see…but have sensed is there
    AMEN…Yes I believe too Ezra. My hope and prayer for your eternal life in heaven is all up to your acceptance of the facts that Jesus shed His blood
    for you and me and every person that is following the events you are sharing
    for the greatest and best use yet…beyond the here and know and the genius of the seat less bike or the pictures but the future for all of us….
    you are awesome EZRA …for God so Loved the world that He gave His only begotten Son…that whosoever believes on Him…shall be saved. JOHN 3:16

    the Lord is my Shepard….
    shepard

  31. ezra, i doubt you will even notice this post. it is the middle of the night and i am home thinking of you. i have been in speechless hero-worshiping awe of you since the time of my earliest memories on this earth. just being able to spend the day with my big brother had the ability to leave me glowing, and (much to the annoyance of my classmates) bragging about my amazing big brother ezzie. i am so saddened to be helplessly left to know what life without ez is going to be feel like. i have not been able to make a lot of smart life decisions for my own benefit, but i feel compelled to make some changes simply to honor your life, and its truly unjust abbreviation. I can’t give you my years to live, though i wish i could, but i can try to live them in a manner that will honor your spirit more than I have in the wake of our fathers suicide to honor him. I love you eternally, and will see you soon. xoxoxxx SjC

  32. So much energy is coming out of your writings..great source of inspiration Ezra…can feel the creativity..you are high man…totally understand how you are feeling now..way to go Ezra..the adventure never stops