Back in action?

It has happened again, that I am finding it much harder to write about remission than illness.  To talk about the practical realities of treatment is easy.  Shit bags, missing hair, pain and the narcotics that go with it, eyebrows, etc..  Once the actual work of treatment is done, though, the emotional reality sets in and it’s confusing as hell.  So in reverse chronological order I will do my best to bring you up to speed.  (I’m sorry not to have written earlier).

- Last night I sat in traffic in a taxi cab on 10th avenue trying to get through the lincoln tunnel and out to NJ to hear U2 at Giant’s stadium.  Glen, who had gotten us great tickets from Bono, was having a nap while Hedi Rose and I wondered if it was worth it.  In the end, worth it or not, we bailed.. (Glen woke up and said, “whadda ya say lads, shall we go back home and watch TV?”) we were in gridlock in manhattan an hour and a half after the show had been scheduled to start.  Oh well.

- Just before getting in that cab, I had delivered Hedi her new bike.  A frame that I had nearly finished almost a year ago just before recurring.  It had about a day and a half of work left, including assembly, which I managed to do over the last couple of days when I learned that she was in town.

- Monday I had my first day of work IN the shop instead of ON the shop.  Since finishing treatment, I have been working on expanding the shop.  Making two spaces.. one for wood, and one for metal.  The idea is to be able to make fenders and other bits and pieces of good wood for bikes, without having to shut down the metal work in the mean time.  It is my intention to start offering a limited quantity of fenders a la carte again.  The process has been a lot of fun, and a tremendous amount of work.  Building walls, wiring, moving heavy stuff, etc..  The result, however is a shop that I am really excited to spend time in!

- A week ago, as we were discussing what we should have for dinner, Hill got a phone call we had been waiting for.  Her brother’s girlfriend had gone into labor.  Hill hopped on the next available flight to Chicago and has been there ever since.

I am planning to head out there this weekend and meet young Violet Ryan Nanney for myself!  No one should be surprised if I get a little piggy with her.

- Earlier that week I had a Petscan.

I went to see my doc when I got back from Nova Scotia to have my blood work done, and my port flushed.

“How are you feeling?”

“Fine mostly.  Getting more energetic..   I have pretty painful Sciatica, though.”

“DIANE!!!!  Order him a Petscan!!  Ok.  So describe what you are feeling.”

“Same area as that phantom butt pain from a year ago, but not constant and dull..  Acute, and related to specific positions.  Like this, I’ll show you.”

I lay down on the floor and explained that sitting up in bed in the morning would send a shooting pain from my ass down the back of my leg.

“Wait!  here.  Lie flat on your back.  Now raise this leg…. “  He put me through a series of diagnostics and then proudly announced that it was sciatica.

“Um, yeah doc.  That’s what I said”

“You ASshole!”

We have a special relationship.

The results of the petscan were good.  Or at any rate, not bad.  There was nothing new.  Some areas of uptake around the surgical site had resolved.  And one little area of concern had not changed.  In other words, if it IS a tumor, it’s not doing anything.  Cold comfort.  This result, though, means that I won’t need to be poked or prodded or poisoned for a while.  We’ll do another petscan in three months and be able to track the progress, if any, of this questionable spot.  It may just be healing still going on from the surgery.  It may be gone by the time we look at it again.  In the meantime, I can just forget about the whole thing for a while, and focus on getting back to work.  A good result.

- Two and a half weeks ago, on my last day in Nova Scotia, I had the scariest couple of hours of my life.  I had what I can only describe as a nervous breakdown.  It was sort of an out of body experience..  Or maybe an out of mind experience.  It started while I was out in a kayak picking mussels for dinner.  Sitting there on the water I began to talk myself into a state of utter self loathing.  I can’t even, at this point, reconstruct the thought process.  An hour later, though, I found myself in a little sleeping cabin apart from the house, curled up in the fetal position completely catatonic.  My mind was racing, and none of it good.  I couldn’t imagine how, for instance, how I was going to be able to get back to NYC (“drive the rental car, you fool!”  “I can’t possibly!!  I might drive it off the road and kill my wife in a state of self distructive insanity!!!”).  I couldn’t imagine trying to claw my way back into the shop..  I felt quite sure that I only had a couple of years to live anyway.  I thought about the various ways to kill myself.

From somewhere far back in my head, I watched myself go crazy.  There was a part of me in there that found the whole thing fascinating.  A part of me that was saying, “ok Ezra..  snap out of it.  This is nonsense.”  Intellectually I was able to recognize that what was going on was madness and yet I couldn’t stop the waves of very real emotion that were overwhelming me.

I had lost ALL confidence.  The swagger and cockiness that held me together for the last 3 years simply vanished.  I guess I had been waiting for that to happen..  and so far it had just kept NOT happening.  I was forced to recognize that without the arrogance, the thing that I really hate about myself, I simply fell apart.  (I realize now, that I have about three years of justifiable falling apart to catch up on!)

Hill had been napping inside, and came out to find me.  I couldn’t even speak.  I managed finally to say, “baby..  I’m in serious trouble.”

Special Ed brought a bottle of bourbon out and helped me talk my way back to earth.  I went inside and cooked dinner.

Already, the next day, I couldn’t imagine how I’d felt the way I did.  How I managed to talk myself into such a hopeless state.  But I knew that it was possible.  That it could happen again.  I don’t think I’ll ever be the same.  Truly terrifying.

I’ve done a terrible job of describing it.  Forgive me.  It scares me more than cancer, and I can’t even say why.. or  what it is.  I said at the outset that remission is harder to talk about than illness.  Finally, with a break from treatment, your mind gets a chance to wander and reflect.  The chemo fog lifts and with a clear head you get a chance to realize what you’ve actually been through.

It’s been a tough three years.

Yikes.

54 Responses to “Back in action?”

  1. Paul

    Ezra:

    Thanks for pulling yourself out of the hopelessness. It’s a part of being human and you certainly are that. Arrogant or not.

  2. Saintbridge

    I can totally relate to the breakdown as you call it. I too can cruise thru a lot by relying on being cocky, but I know that it is not Who I Really Am.

    I got kicked to the curb by an angel last year and I have been trying to put up a brave front ever since, but a few of my friends — a very few — know how much I have cried and hated myself and wanted to die since.

    I deserved to be cut loose, but what has hurt so much has been realizing how much she meant to me and how my arrogance let her get away.

    I have gone thru those same debates in my head over and over: Why do I deserve to go on? What is the point of all this? I have lost The One, so why bother anymore?

    I am still trying to come to terms with it all. The black days are far fewer than before but they are certainly still there and I fear that they will return and I won’t be able to fight them off.

    None of my stuff it life-threatening (largely) so hard as it has been, I know I could be an a much tougher spot.

    Glad you have such a great support network. Keep up the good fight, dude.

  3. victoria

    you are an amazing guy, ezra. thank you for putting yourself out there — showing everyone glimpses of the beauty and the pain in your world. i wish for you much more of the beauty now.

  4. Valancy Jane

    *hug*

  5. cheryl carson

    i am so happy to read your words again. been thinking of you lots. and your description of your hopelessness brought tears to my eyes. just remember, when in a state like that, everyone who loves you has enough love and hope to cover what may be missing from yours.
    besos.

  6. megan

    just dang. wow. the mind is a weird thing yes. beautiful and scary. glad you had your family surrounding you during that time. glad you are in the shop and your fingernails are pitifully dirty and grimy. happy you are writing too. love.

  7. scoutj

    I’m just glad you made it through. And I know it’s not comparable, but after 20 years and two kids I got divorced last year. There have been a few times where I honestly didn’t think I would be able to breathe. It’s the scariest thing ever. Thank God for the family and friends I have. But damn man, shit gets scary and hard sometimes.

    xo

  8. Catherine Slye

    to go to that deep dark place and return to tell the tale means you have strength beyond your wildest dreams. I can only recommend yoga and meditation. And snuggling with your beautiful wife and Putney. :) love and peace.

  9. virginia

    so grateful that you are sharing this. one day at a time and just breathe.. my mom is at the tail end of chemo and I suspect that the next couple of months will be more difficult for her than actual treatment. you are strong, amazing and such an inspiration!

  10. Juniper Jones

    I wonder if it occurs to you…if you are aware…how much your life and your words affect your readers. You are teaching cancer how to cry…you are teaching us how to live…Very few people get to realize, in their own lifetime, how they’ve inspired others. You, my friend, are one of the chosen few…

  11. Chase

    Yikes about sums it up.
    Relax. Have a bourbon. Pour me one too.

    Take solace in the fact that you’re back to building machines that give others great pleasure in life.

    Rode the shit out of mine last weekend and managed to break a spoke on a pretty sketchy road. Maybe you’ll let me show you some time.

    What doesn’t kill us allows us to risk it all another day.

    Take care.

    -C

  12. todd

    Love you Ez

  13. John Cline

    I have been reading about your plight for three years and if you are in Chitown I would like to buy you a quick/long beer.

    Hit me back if you are interested…if not? That’s cool too…

  14. Chauncey Matthews

    Yo Ezra,
    All that shit had to catch up sometime…but you came through the other side baby! The new bike is sweet, sweet! So sweet, I “outed” you to the folks at VS
    http://www.velocipedesalon.com/forum/f15/friday-picfest-no-123-a-22533.html#post314854
    Can’t wait to see what you have coming up next!

  15. Dilonious

    You should be comforted by the realization that many people have those same thoughts without going through the years of intense troubles you have. You are one of the strongest characters I have ever came across, thanks to that.. you have and will prosper.

  16. Tamara

    I really appreciate you sharing about this experience in particular. I have watched (lurked) as you have so valiantly faced cancer, and I sort of thought you were superhuman. While I’m obviously not happy you went through it, it helps to know it happened, somehow. It makes you seem that much more human. Or something.
    I have next to no experience with cancer, but these mind warps I know a bit more intimately. You’ve done an eerily perfect job of describing it.
    You really do have strength beyond what you know.

  17. April

    Ezra, you will get back on the horse…wait, bike, and ride! For a metaphor, that’s a poor one. All of the trauma you’ve been through is going to create some emotional repercussions, just hang in there and love your beautiful wife and dog and you will make it.

  18. Nikki

    you are a survivor. there is so much more to surviving than just the act of getting “through” something. a favorite poet of mine has a line that goes, “there is life after survival.” i truly believe in that.

    be patient with yourself, and express whatever you need to express. there is life after survival. sometimes it is like frostbite–there’s pain with the reawakening of feeling and realizations. i’m sure you have a good support system, and that system must involve yourself as well.

  19. Jim G

    Sounds like you bonked. Eat some sugar!

  20. Greer

    This Too Shall Pass Ezra. Really beautifully said. I’ve been to places that might be similar.. big virtual hugs to you!

  21. maggie

    love and miss you, Ez. Glad to check today and see a post! Thinkin’ about you every day. <3

  22. kris

    It may sound strange, but I’m glad to hear you finally broke down…I was wondering when it would happen. You’ve been through so much…SO MUCH…and you should allow yourself to mourn the parts of you that you’ve lost and acknowledge the pain you’ve been through. Go crazy, mourn, let your mind go to dark places…and then come back…and heal.

    We all love you Ezra.

  23. willow naeco

    We love you, Ez! Wish Violet could have waited another week so you’d be in town for Chicago Critical Mass. Let me know if you and Hill have time for a squeeze from me when you’re in town. You’re good people!

  24. jrobtp (bob)

    whoa. yer strong even when yer not. ok?

  25. Diego

    that makes you human, Ezra…
    love

  26. Tony

    Gods it’s good to hear you are well. I can’t wait for fenders! You’ve been holding things together for so long, shit was bound to rattle loose. Glad to know you have the right people to put you back together.

    Keep it up. Enjoy. And keep us posted if you can. It helps. (It helps me, that is.) Cheers.

  27. Christina

    Contrast can be tremendously powerful. You bore witness to this experience instead of simply getting sucked down the hole. Let it all play out and keep near those who love you and whom you love. Hugs and continued high fives.

  28. EM

    Te mando abrazos. Love you!

  29. Paul P

    love you ez. everett and I need to come uptown for a visit soon.

  30. Maria

    I am truly moved by the love of the people around you Ez. Special Ed know what to do, and he was THERE. You are blessed that way. It seems that you are getting life’s stuff in very strong doses. I think most of us can only handle the mild stuff. Be kind to yourself now, and always. I am glad that the part of you that was observing you go through that dark place kept the door open to the light side.xoM

  31. k

    don’t know you, but i do love you.

    thank you.

  32. Kendall

    Really pleased to have an update, Ez… Good, bad or ugly the writing benefits your readers as much, I’m sure, as it does you.

    Photographing a wedding in peggy’s cove NS and thinking of you.
    Love as Always.
    K

  33. Sandy

    I had very similar experiences while going through tremendous grief three years ago. I had a reset, of my mind, my behavior and my entire being, it was a very and long process. It was the most annoying thing but I now realize it was good for me. I was awkward for the longest time, you saw me twice during that time. I really don’t think I was myself when I saw you and Hill. And I don’t think I’ll ever be the same again but as cheesy as this may sound, love keeps you going. Realizing simply by being you, how you have defined bravery, that is something that merits 100% self-love and not loath. And no I’m not talking about being brave for others but you were so brave for yourself, to fight on, when things were just ridiculous. You did well, Ez, more than well. Lots of love and hugs from midtown. Xoxoxo. Enjoy Chicago and meeting a brand new life/family member, I know she will make you smile :)

  34. Alicia

    Ezra, you just had to let go of all the tension. Vent. Explode. Remove the mental pressure that your disease has put on you. You had to wash it out. And it’s done.

    I can understand what it’s like, though probably not to the extent that you have described. It’s the blackness, the nothingness, the hopelessness calling at your door and asking to be considered. It’s the abyss.

    It’s there, but you’ve looked it in the face and now it is not a secret. Just keep walking, keep going. It will get better. It will matter, as your life certainly matters to you and to many other people.

  35. Allison

    Ezra, I found that the physical battle was only part of my cancer story – the emotional and mental battle was much tougher for me. I found great comfort in the book Dancing in Limbo when I finished treatment. Perhaps worth picking up a copy?

  36. ashley

    hi ezra,
    you don’t know me:) I found your blog thru your story on npr. I just had to “second” allison’s wonderful suggestion to pick up Dancing in Limbo. I think you might be shocked to read how common your (terrifying) experiences are. You’re “right on schedule” the authors would say. That might be cold comfort, but you are absolutely not alone. You’re doing great, hon. Sending big love up to you all the way from down here in Austin…

  37. Burnt Umber

    It’s about freakin time you had a melt down! I was beginning to think you were some kind of robotic cyborg.

    I know exactly what you went through. I have been in that dark place twice in my life. Both times I emerged energized and with a sense of purpose.

  38. Leslie

    Remission is so much better then where things were last year at this time with you.
    Did you know a analysis of 127,753 patient records found that married patients had a 14 percent lower risk of death from colon cancer.
    http://www.dailyrx.com/news-article/colon-cancer-patients-who-are-married-live-longer-14282.html
    Thank god for wives and puppies.

  39. Cyclin' Missy

    I don’t have the words to express my empathy/pain/care/hope for you, but I just want to let you know that my heart reaches out to you with comfort, peace, energy, love.

    Keep moving forward one step at a time, and when you can’t, just sit with your loved ones surrounding you. Then get up again.

  40. Ray and Suzanne

    Ezra, don’t spend a moment feeling guilty about not writing about your remission. After my bout with cancer several years ago now, I remember basically giving the whole experience the finger and tried my best to move on and enjoy my life. Also, re the breakdown scene: few would feel comfortable writing about such a thing, but I can relate to that as well. Seems like after we are so intensely working toward something, when we finally relax, we are also the most vulnerable. Lastly, that was one beautiful bike you built.

  41. Ali

    Ezzie – I love you to pieces, you shining pillar of hope and light.
    XOXO
    Me

  42. Gabby

    What Ali said! xo Gabs

  43. Krista

    Ezra, I’ve been following your blog for years and this last post has finally compelled me to make contact. You never cease to amaze me with your ability to be brutally honest about your experiences, and what you wrote about what happened in Nova Scotia is no exception. I had a visceral reaction, because you articulated something that is so difficult to capture with words – I’ve long struggled to describe to others what it feels like to have a panic attack. I study/work in the field of clinical psychology, and one of those slippery concepts we often speak of, yet don’t fully understand, is ‘resilience’. It may sound strange, but you often come to mind when I’m grappling with what truly defines resilience in the face of trying circumstances. The fact that you can write so candidly about being terrified, vulnerable and hopeless really shows just how resilient you are . . . I hope that you know that.

    An aside – as an aspiring shrink I know that there are a number of people in the city who specialize in work with cancer patients & survivors. Just something to think about . . .

    All the best to you and Hillary.

  44. Paul

    Ez,

    Thoughts are always with you. This is tough stuff. While I don’t know you I can only convey that your talents have touched me in an amazing way. You are a true craftsman and an artist.
    Stay strong!

    p

  45. Kamala

    We have a special relationship. Haha, my doc who did my last surgery and who is awesome is a Pediatrician with 3 girls under the age of 5…it’s crazy.

    I started to freak out last night about “What if I get sick again when I’m at school? What if I can’t handle it?” It was terrible. I was crying and I couldn’t breathe. I’ve never, ever gotten that upset about the car accident or surgeries. It was always a normal part of life but when you’re on your own at university, it gets scary and overwhelming.

    One thing that I learned last year when I was at the SECU Family House in Chapel HIll, NC was that no one wanted to talk about depression. No one, as in the family members taking care of their sick loved ones, wanted to talk about how depressed we, as patients dealing with being sick, were. It was like everyone expected us to be grateful that we were still alive and be humble like we’re some 30 second human interest story. Being sick and in the hospital SUCKS, it’s depressing. Facing your own mortality is humbling and it makes you realize how vulnerable you really are.

    …sorry for that rant.

    I’m glad you’re getting back into the shop, I’m always here if you need somebody to talk to.

    Take care Brother,

    -K

  46. Laurie

    I’m so glad to see your words again! And I’m glad you have a devoted wife and friends around you to ease you through what MANY others in your position will agree is actually the hardest part of cancer treatment – figuring out what the “new normal” is, because it’s not the same as the “old normal”. I just blogged about it last week, actually… must have been channeling you. ;)

    Stock up on the good bourbon.

  47. danielle

    I had a similar experience yesterday, although I’m 10 years out from when I finished treatment. It was good to read your post, you helped put words to something I couldn’t quite nail down yesterday. Thanks for your honesty about what this fight is really like some days.

  48. kamma

    there is beauty in the breakdown my friend.

    thank you for your words.

    big love
    kamma

  49. India

    You’re such a compelling story teller of life, Ezra.

  50. penny

    i’ve read your words for at least a year now and i have an immense amount of gratitude and admiration for the way you’ve shared your story. sending you thoughts of healing and calm and happiness. and, ps. that bike is FINE!

  51. bill gibson

    i am typing this one handed during my 4.5 hour dialysis run today… i came to check up on you hen my brain registered that you hadn’t posted on flickr for a bit….i am sorry you found yourself in a darkmanic hopeless corner…i think the most important thing aside from talking to your wife, friends, doctor, mental health professional, is tpull one thing out of the black: it will not last, you will feel better, the key is to hang on, no sudden moves of the terminal kind, talk and wait, it will lift, you will lift an hour a day a week it will lift, let people help you, distract you, comfort you, just let them in, don’t hide it.

    i have had lots of black moments, they have all lifted

    btw i am doing ok, my treat to me today pre-dialysis was an extended snuggle wrestle with my golden retriever Grace

    be safe try to do good work tell a few jokes and one day i will drop in and you had better be cooking that night

  52. Donna

    Dear Friend,

    We don’t know eachother, but I wanted to tell you that I came across your website a few months ago after losing one of my dear friends to colon cancer. I’m sure we have a mutual friend somewhere along the line, but i can’t exactly remember who.

    One thing i’ve struggled with is while my friend was going through her battle she was always so upbeat and positive. At some points, since we lived in different states, I didn’t realize just how sick she was. Your honesty and openess has helped me understand what she went through and has been helping me through the grieving process. That probably sounds pretty lame but it’s very important to me and I’m very grateful for that. That being said, I’m so glad that you’ve shared this experience. It’s healthy to get those fears and feelings out.

    I’m praying for your health and well being and I will be forever grateful that our lives electronically crossed paths.

  53. Cyclin' Missy

    Hey, Ezra. Just hoping all is well.

  54. Rie

    I saw Hillary in the airplane for Chicago. My seat was in the front of her!! (I understand why she was there now.) I could not say hello…….
    But All the best to you and Hillary.

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