If I had a third end..

 

austinevenings

 

I’d be burning it too!

For the third day in a row I was up at 5:00 (4:24 this morning, in fact).

I go to bed excited to get up the next morning, drink coffee, and get going!  Last night, out at dinner, my brother pointed out that I’ve always said, and had a “you can sleep when you’re dead!” type attitude.  These days it’s literal!

As I got out of bed this morning, Hill said “baby, go back to sleep..  sleep is important..  you need it.”  Undoubtedly she’s right.  But I’m like a kid on Christmas morning.  I have beautiful medium format transparencies to scan from when I was up in Vermont.  I have black and white rolls that need to be processed.  I have bikes that need to be prepared for the bike cult hand built show  coming up on labor day weekend (and a display to build!).  I have photos to organize and put up on the photo website for sale for this week.  I have pill flasks to finish.  (I have book-keeping from 2012 that needs to be done..  gag..).  I have dinner to plan tonight for the bike show organizers.  I have blog post to write!   The thing is..  It’s ALL stuff I want to do (except the book keeping).  Christmas!!  There simply aren’t enough hours in the day.  I promised Hill that I would have a nap this afternoon.

I think this is what they call mania.  And I think I love it!

I do my best thinking early in the morning.  I really do love being awake for the sunrise, whether I’m able to see it or not.  Just to be up as it gets light out.

Lately I have been on fire.

 

BREAK.

 

In the interest of the spirit of honesty and frankness that has driven this blog from the start, I have decided to leave the beginning of this post just as it is.  Yesterday I hit the wall.  In a big way.  In the morning while in manic frenzy, I worked a bit on the post,  took Putney for a long walk, developed a roll of film, scanned some photos..  picked out photos for this week’s offering,  and eventually, much later than usual, got to my every other day emptying out ritual, and somehow, by the end of it (I’d been awake already for 8 hours by this point) began to feel super drowsy.  But in an uncomfortable desperate way.  It had been my plan to do the dreaded book-keeping and THEN get out to the shop to work on pill flasks, all before making a trip to the grocery store to get everything I needed to cook for the bike show guys.   But I was sitting there in the bathroom..  my ablution ritual office all set up.. falling asleep at the keyboard as my guts did what they do when assaulted by liters of water.

The night before I had been in a lot of pain. Had needed to take quite a lot of break through medication to get on top of it.  Had woken up at 4:00 or so, partly because of that pain and by 4:24 had decided that I might as well just get up and get to work.

Last Sunday, the day that I did the printing of the panda portrait that I sold last week, and made green chile for the Sunday night dinner crowd (all with the help of my dear friend Miye and Sister Mary), I looked down during my morning shower and noticed something strange.  I noticed that I could, in fact, SEE a tumor.  The point here isn’t to freak anyone out..  allthough.. I’m a little freaked out myself, to be honest..  but, I could see running along the line of my inguinal ligament towards the base of my penis a swollen area that I had NOT noticed before.  Right in that crease that forms as you sit down.  There is a predominant lymph node there, or some sort of node or gland..  but this seemed a little different.  Looking down, I could SEE extra tissue.  “Well, THAT’S, fucking weird.”  I pressed on the thing..  Not painful, but clearly extra tissue.  I had a sudden wave of..  well.  I’m not sure what to call it.

I have been feeling SO good.  I have been on this manic, productive, creative tear.  The hospice team has been doing SUCH a good job of making me feel like myself that I was beginning to wonder whether the whole thing was just some elaborate prank being played on me.  Shit, I was supposed to be dead a month or so ago, and instead I’m out in the woods making bike trails and riding again, and working in the shop, and playing the best pool of my life.

So the way life does it, along came the reminder.  “Oh no, Ezra, we assure you that this is quite real..  and the really ugly part is on its way.  The part where you begin to become deformed.  Where you get the grapefruit sized tumors that you’ve heard of other people carrying around with them..  Let’s see you spin that!  Make THAT beautiful.  You may FEEL great right now, but we promise, this disease IS advancing.”

By the time I had printed photos on Sunday and labeled envelopes and cooked dinner, I was pretty emotionally spent.  All day long this fucking visible tumor had been in the forefront of my mind.  I put food on the table and sneaked away to go upstairs and take a break for a moment.  I had been at work across the kitchen counter from a Sunday night guest that I had just met for the first time, whose mouth was moving a lot, and I got the sense that really interesting things were coming out of it and that I should be listening and responding and I simply didn’t have the focus.  Half way up the stairs to our bedroom I started to sob.

 

Perhaps these last few days of waking up at 5 in the morning are just a reflection of a new even more intense sense of urgency.  I have things to do, damn it!  But I don’t quite have the fuel.  Yesterday I ran out.  I hit the wall.  I finished my morning water rites, barely keeping my eyes open, reported to Hill that I wasn’t feeling terribly well, and I went to bed to take the nap I’d already promised her I would.  Fighting even then to do a little work on the computer first.  I fell asleep hard for a few hours.  Woke up just in time to go do the dinner shopping and get home for the bike show boys.

 

This morning, Hill and I are up early again.  We’re hopping on Metro North and heading up to Westchester to ride mountain bikes.  We’re aiming to make it back to the city by mid day so that Hill can get to an important meeting.  I wrote yesterday to my hospice doc (while still in my water park office), who called me back almost immediately to set up an appointment.  I’ll see her this afternoon.  She’ll have a look at me.  She wants to change the pain protocol.  She feels that a different solution is somewhat inevitable, and doesn’t want to wait until I am in a real crisis state to get it in place.  I feel totally safe and sound in her hands.  She is young and smart and makes herself very available to us.  A friend.

I will do a little work on the train ride up to Westchester to prepare the photos for this week, and I will make them available early afternoon.  It is a “monkey business” set.  A set of photos that I hope captures some of the madcap sense of joyful creative surge that I’ve been feeling.  Old pictures, but ones that were driven by a…  well.  You’ll see.  I hope you like them.

Now.  Off to prepare bikes and bodies to get out in woods and enjoy what looks to be an absolutely perfect day in this part of the world.

 

More mid day.

 

Fast boy OUT.

 

UPDATE

 

Back from our ride.  It was amazing!!  HILL IS AMAZING!  We’re going to have a very fun fall.

Pictures for this week are now up!

 

 

 

 

38 Replies to “If I had a third end..”

  1. So much the better that you are able to let go of the hope and mania instead of struggling not to see it – a more profound journey that way. I am in Nova Scotia for a few weeks and will be back in NYC Sept 20 for a couple of days…leaving Mahone Bay today and heading slowly up the coast to Ingonish…let me know if I can stop anywhere for you and grab something (photo, t-shirt, pebbles).

  2. Thanks to Glen for telling of his dear friends back at a concert in Melbourne March ’13 (where I sobbed) I tracked your blog down and have read it ever since. I don’t know how you and Hillary do it, such amazing people you both are. Anyway I felt like a intruder prior to this day, but am driven to say thank you , never has someone written so powerfully about their illness, you have made such a profound mark in my attitude to life, so yeah, thank you Ezra and Hillary and all the best,
    Clare

  3. Ezra, when I said you would likely flame out I wasn’t thinking of the literal reality of burning out as well. I love your mania but I think it might be wise to dial it back a bit. Getting a handle on pain before it gets a grip on you is a great place to start. Conservation of energy may need to follow.

    You, even in the midst of shit, remain glorious.

    love, Linnea

  4. Bring on the pain meds and do as you feel and Hill and your hospice doc recommends…..you are still on fire to us, even as you rest!! We’ll hold the torch on your breaks, surrounding you and Hill and Putney with love, XO p.s. Here’s to mornings!! Dog bliss you!

  5. “Dance, when you’re broken open. Dance, if you’ve torn the bandage off. Dance in the middle of the fighting. Dance in your blood. Dance when you’re perfectly free.”
    ― Rumi

  6. The phrase “living at the speed of [de]light” comes to mind.

    You love and are loved, Ezra. That’s as good as it gets. And that’s the part cancer can’t touch …

    (An aside: I’m officially cleared by the doctor who did my hernia surgery to ride my bike again beginning this Saturday. I am, at least in spirit, bringing you with me, and you’ll be along for the ride when I do El Tour de Tucson in November.)

  7. Ezra, I hope you and Hillary really understand how much you mean to those of us who are following your journey so closely. I am so pleased that pictures of my favorite dog (with the exception of my own dogs) brought me into your world. You amaze and delight me with all you do. But please, slow down a bit. Don’t exhaust yourself by trying to get everything done at once. Spend more time snuggled with Hill and Putney – what could possibly be better than that? Sending love and prayers for you and yours.

  8. Hi Ezra, happy to see the end note here about you and Hill gone riding. Made up for the sadness I felt when I read the part about finding a tumor. Actually I wondered what you were up to over the last few days. I got a little worried so I went back and watched the Putney video again, you guys blazing trails and having fun. Doggie nonsense. Laughed again out loud. Great new set of photos–monkey business–all so awesome!! Super duper aero tuck sold out, but very happy I got ghost ride 2. I just want to hop on that saddle and go for a ride with you. Hey, take ‘er easy now please OK. We’re not going anywhere. Hugs. XO

  9. I don’t know you but, man, I love you. Seriously. Thanks for just meeting each day with what you have right now, and being so honest about how it all feels and goes, good or bad. We’re all rooting for you, from here to the beyond, and, personally, I hope I can meet my own fate, however that plays out, as gracefully as you are meeting and dancing with your own. Your words and life are a gift. May we all learn from you that this is true for each one of us, as well. Grazzi.

  10. I wish you could only know the profound ways you have changed me, Ezra. Checking your blog every day (some times SEVERAL times per day) has become a constant. You are courageous and beautiful. Your wife as well. And sweet little Putney… my mind goes to her often also. Reading that you could “see” a tumor broke my heart, but reading that you left to sneak off and started sobbing “half way up the stairs” made me sob, too. I feel torn… so many are telling you to slow down. Half of me agrees. But the other half says, “Do EVERYTHING you want and be happy!”. Just take care of yourself. And yes, what Mara said… Lots of time with Hill and Putney. Thank you for the beautiful pictures. I now have two… both of Hill and Putney actually. I want a great one of you, but they always sell out before I can get one. I’ve proudly hung them in beautiful frames on my wall and when people ask about them, I find myself saying, “I have this friend….” (even though I’ve never met you). Is it bad to say that? I feel as if I’ve known you for years – and I’m thankful for that. You’ve made me better, Ezra. You really have. TONS of love as always from the Colorado mountains.

  11. My candle burns at both ends
    It will not last the night;
    But ah, my foes, and oh, my friends –
    It gives a lovely light.
    Edna St. Vincent Millay, “A Few Figs from Thistles”, 1920

    Especially yours, Ezra. Especially yours.

    Fuck Cancer. You’re still Ezra.
    I love you, friend I’ve never met.

    Candice

  12. Ride,Ride,Ride…..cause we’ll be sleeping for ever..I grew up in Westchester county.Lived there for 50 yrs.In Somers Just north of White Plains.. Now your making me home sick.But I wouldn’t trade the beaches & ocean for anything.

  13. Ezra,

    Thank you for many years of inspiration. Now more than ever, I look forward to your words and photos. I’m a career firefighter and usually meet people and their families on the worst day of their lives. You get a great appreciation for your time on earth after a few years and a few tragedies. Your time has no guarantee Your outlook and drive through it all has been something I’ve discussed with many friends and co-workers. I’ve shared “The Bike Maker” also with them and the response has always been positive. Though you have me and others standing by(LOL) hoping for pill flasks and photos, it is your words, photos and drive is what inspires most and I wait for that art daily.

    This could really be a long post,
    but I just really wanted to say, “Thank you”. As an artist and cyclist myself, “Thank you” for inspiring me. “Thank you” for showing us the simple pleasures in life, our loves, families and passions are what define us and should be enjoyed everyday. “Thank you” for pushing forward and explaining just how hard that is for those who have no idea. Those of us who are lucky and healthy have no excuses not to live and push through the trivial, if you can do what your doing and knowing that time is of the essence.
    “Thank you” Ezra. You’ve touched many.

    P.S.-
    I would like to send you something if you have a PO box or address I can mail to. I will get it mailed out tomorrow. -WB

  14. Ezra, as so many others I have been drawn to your blog by the beautiful photos, the beautiful girls in your life, the wonderful food you present and the wonderful bike stories. I have grown to appreciate and envy your way of dealing with what you have been dealt. You look at what you have that is good more than what is bad. You cherish your loved ones,your time and your fun. I can’t let you leave this planet without telling you that you are loved by many who have never met you face to face. I must also tell you that I am not a religious fanatic, but I believe with all my heart that there is an after life and a heaven. I want to see you there someday. I don’t know if you have any spiritual beliefs or not, but there is a God, and he loves you. If you believe that he has a son Jesus and that his son died to reconcile you to his father, you can be in heaven someday. When your day is here. Nobody wants to talk about this. They want you to keep living and doing, but we know that for all of us, our day will come. We have to think about what happens next. Do you really want to take a chance on not believing if it is real? I care about you and Hill and would never want to make you mad or upset, but I felt I had to share this with you.

  15. Nothing beats your spirit of honesty, Ezra. Thank you for sharing, for pushing and documenting as you do. Love and light from the desert.

  16. Ezra, I received my photograph a couple days ago and it is amazing (it’s the one of you on the bike, looking up). It’s so weird, but I felt this crazy connection to it as soon as I pulled the cardboard packaging from the mailing sleeve. It was as if you had handed it to me yourself. Like I said, weird. I had been on the fence about buying it as I wanted to get “just the right one”, but had continued to miss my window of opportunity in your For Sale offerings. So, I purchased this one, not knowing if I’d even have another chance. Anyhow, I’ve determined that I have ended up with “just the right one” through some kind of fate. I love the image and it speaks to me very deeply about life and living, joy and love. It’s a little piece of you that I’ll have forever, a reminder to never sit on my laurels as life goes by, to go out every day and do the things I love and live the life I’ve dreamed. Maybe this seems a bit overblown for a simple photograph, but as many others have said here, you touch people through your words and your art…hell, just the way you live, even here at the end. I’ll keep sending my thoughts and energy to you, hoping you have many more good days ahead of you. xoxo

  17. So touched by your writing–and cried to think on your seeing the tumor as you have. How you will make this beautiful? You do, you are, you will–the way you live makes me try to be a better person.

  18. Can’t they take the fucking tumor out in another surgery? There does not have to be chemo afterwards, just cutting it off? Oh God, what a nightmare. It seems that cancer has begun to teach you crying.

    I can hardly imagine how I would react in such a situation. Probably I would panick. As I am familiar to diseases of family members of mine from a quite young age on, I now accompany my husband. He has got a severe disease, too, since 2008, no cancer, but something similar. He is fighting, refusing transplantation, never giving up, still working every day.

    But he has found a way to be more tender to his guts instead of fighting the disease. He invented a method for himself to let a healing wave flow through his sick organ, visualizing ocean waves floating and retiring on a gravel beach, hearing the sound even, when he closes his eyes, and installing it somehow to continue when he is living his every day life. His organ is still functioning and slowly recovering in tiny steps, it seems that the sane cells have taken over.

    You are a master in discipline, work and fighting. Respect! Maybe it is not too late to be more tender to your guts and sending some love through your colon. I tried it and did not know how to do it, but maybe a Quigong master could be of any help?

    And fuck the book keeping, someone else can do that!

    Love, Paula

  19. Hi Ezra…I’ve been reading your blog for a while but was too shy to post anything. I just wanted to tell you how touched I am by your words. Every time I read a post I go through a rush of emotions…you have this way of expressing your thoughts that makes it easy for someone who’s never met you to get a glimpse of your soul.
    Anyway, just wanted to spread the love. You truly are one of a kind, and I hope to keep reading about these good days you’ve been having. I am thinking of you and sending nothing but good energy.
    Keep on rockin’, you are awesome Fast Boy!!

  20. Love your posts as always but I do hope you have someone to talk to about everything you are going though.
    There is a mythology to cancer that prevents people from ever wanting to talk about it. People say they will pray for you or they know someone that had a miracle which is all fine but what if………what if that does not happen for you?

    I agree with Linea Duff who said it might be wise to dial it back a bit. I am just afraid that you are going to hit a wall and have a hard time coping with it.
    Besides a great medical team, its important that you have someone apart from your close loved ones that you can talk to.

    Every day I think of you and hope that today you are ok!! 😉

  21. I’m not even sure how, but I stumbled upon your blog whilst searching the Internet for a local (to me) short film competition. Somehow I made it here into a little bit if your world and I’m so glad that I did! I don’t usually subscribe to blogs as I’m usually too busy to read stuff online, but from the moment I read this entry I couldn’t stop. I felt….feel so emotional after reading your posts. Wow! Despite everything you’re going through there is such a raw beauty to your words, words filled with so much love and positivity. I have so much I want to say but am finding it hard to say anything that makes sense and accurately conveys what I’m feeling. I so wish my words could heal your pain in the same way that your words touched me, if only! You are an amazing and inspirational person with such a strong spirit and I can tell that you are surrounded by so many people who love and admire you! Thank you for letting be a part of your journey!

  22. Hi Ezra- I had the great fortune of finding your blog through Linnea. Aside from love of dance, dogs, bikes, good food, and visual arts (and I am guessing some Celtic ancestry) we have little in common! You are amazing. Take good care of yourself so that you can continue to be amazing.

    Fuck cancer.
    Best to you,
    Joan

  23. Hey Ezra. We will never meet, and maybe this won’t mean anything to anyone but me, but I wanted to tell you that you have a very beautiful way of living. This wall of comments above makes me feel like you already know this – and that you know that your sharing your life enriches us. I wish I had it in me to really live my life, as you do.

    Anyways, thanks.

  24. Ezra, thank you for sharing your journey with candor and grace as always. I can’t tell you how much your story means to me. There are so many tragic stories out there of people gone too soon. Nearly all of them are told from the perspective of those left behind. Being able to read your own words brings me hope and comfort. I don’t care how short, mundane, scary, or sad your entries are; each word is a gift. Thank you from the bottom of my heart for sharing your life with us.

    Oh yeah, and fuck cancer, for real.

  25. Hi Ezra, its been several days since you posted. How are you feeling today? I love reading your thoughts and am anxious when I don’t see them. Let us know that you’re at least cuddling with Hill and Putney please.

  26. As someone who worked for a hospice as an oncology massage therapist, thank you for speaking so eloquently about palliative care and hospice. It is a shame that it is not more understood by the mainstream and instead it is maligned and swept under the proverbial carpet.
    Your blog is beautiful, heart wrenching, infuriating and inspiring. Hugs and love to you and yours.