Yesterday

I had a bit of a disappointing day yesterday.

I went in and met my surgeon for a consult.  He, like all the other docs that Alberto has set me up with, is an outstanding guy.  I got a very very good feeling from him.  He had a young woman third year med student with him, which was a little strange.  To be lying there stark naked pulling my knees to my chest, feeling very small, with a wide eyed med student looking on, who frankly looked as though she felt more awkward than me.

The disappointment was mostly just in hearing exactly what I already knew, instead of some outrageous good news.

I was hoping that I would say to the doc, “Hey doc, Alberto says I can’t ride a bike..  it that true?  Is he just being over cautious?” and that he would say “Oh that’s just silly..  Go ahead and ride your bike.  Your happiness and sanity are of the utmost importance..  I’ll call Alberto and tell him myself”

This is not what happened, of course.  Instead, he said “no..  He’s right.  You really can’t.  And in fact, when the treatments start, it will be quite uncomfortable for you to even sit on a chair, let alone a bike saddle”

The other discouraging affirmation is one that I haven’t really addressed here, but is far more important, I guess.

The tumor is very very close to the anal verge (asshole).  Less then a centimeter.  It is standard in these cases to do a sphincter amputation.  This leaves you, of course, with a permanent colostomy.  This possibility has been looming from day one.  At first, because the GI doc who did the original colonoscopy was very vague about the tumor’s location in the report, this possibility seemed like just a vague thing to worry about.  Every step along the way it has become more apparent that it will be my new reality.  A glimmer of hope came with the ultrasound.  It indicated that the tumor was pretty shallow..  that it wasn’t penetrating into the muscular wall of the rectum, and that perhaps the radiation and chemotherapy would do enough to shrink it that…

The surgeon put those hopes more or less to rest.  He said that we couldn’t be sure until the treatments were done, but that he himself would go with the gold standard.

Oh well.  Plenty of people have permanent colostomies.

0 Replies to “Yesterday”

  1. you got that right, Miss. Change is something that people seem to be terrified of, even though, as a species, we excel at it.
    After just two weeks of this being a possibility, I’m already used to the idea.

  2. I only know you through Flickr, but my heart has been breaking for you since I first read of your diagnosis. I find a great deal of hope in knowing that you are The Man, though. If anyone can kick cancer’s ass, it’s you, Ez. Hang in there, man. Everyone’s sending positive vibes your way.

  3. Well that blows.

    On the plus side, there have been times when dealing with certain people that I’ve wished I had some poop handy to throw at them. So ………. there’s that.

  4. I’ve gotten rather good at holding uncomfortable concepts at a long arms distance. This honest account is already helping me through a few situations close to me. I hope this journal will continue to help you as much as I expect it to help me and others that come here.

  5. I can’t talk from personal experience, but I know for a fact that with a colostomy, you can jump to the front of any queue for the restroom, even at Glastonbury.

  6. you can also quickly hush up anyone that wants to cleverly remark to you: opinions are like assholes, everyone has one.

    wrong my friend! now be quiet as i elaborate on my opinions…

  7. Hi. I’m a fan of your flickr stream.. I just thought I’d pipe up to say that my mom has had a colostomy bag for more than fifteen years (after a long battle with ulcertive colitis when she was in her early thirties) and has been living a very (actually, pretty much totally) comfortable, active life. Really!
    Heartfelt goodwishes to you and yours. Get well soon! xo

  8. You guys are cracking me up. The possibilities truly are endless.

    Kellog, you’re kind to say so. Thanks. If this thing ends up being a help to anyone at all, I’ll be delighted. I’ve found so far that uncomfortable concepts feel much LESS uncomfortable when they become reality. Then they just ARE.

  9. woops.. Ethersong- we were writing at the same time.
    Thanks for that. I’m really already pretty used to the idea, and I’m sure that there are hundreds out there like your mom who’ve managed to make it just part of life. I don’t doubt that I’ll be able to do the same. Kudos to your mom. Tell her thanks from me!

  10. I suppose that adaptations are necessary in every life…..& they sometimes lead to great discoveries and inventions. So I’m just wondering–what kind of bicycle might you build some day that will allow a person “unable to comfortably sit” to continue to enjoy this pursuit in some manner……? All the best from all of us.

  11. You have incredible character. Frankness, humor and illness are excellent bedmates. I had a close friend that had ALS and the moments we spent together talking and laughing changed me. One day as I was complaining to him about something he looked at me and said “Did anyone help you go to the bathroom today?” Shut me up…

    p.s. If your insurance is Empire Blue Cross Blue Shield I have a relative who works there so if you are having problems on their end I could get you in touch with her.

    Best thoughts.

  12. DanEz,
    If anyone can do it, you can. And by “it” I mean transform a colostomy bag into something both serviceable and ruggedly fashionable. I’m rooting for you.
    -your cuz

  13. Geezus, you are handling this like a champ! I always knew you were hardcore, but this really takes the cake. This is like, the most hardcore ever. I’ve been reading every day and frankly admire your ability to accept, adapt, and carry on. You’re like one of those old-timey storybook heroes who has his leg eaten off by a tiger and who ties a scarf around it and keeps on trekking with nary a complaint. I cry when I get a cold, for crying out loud. (Don’t tell anyone that.)

    Colostomy bags are no big thing. Chicks dig ’em. Plus they seem more convenient than the conventional arrangement, in more ways than one. The only guy I knew with one was born with a birth defect which meant that he needed one from birth. As he had never known anything else, it was no big deal for him, just the way things were. I am pretty sure it will be that way for you after a short time.

  14. I know allot of asshole here in Miami. I am sure we could find a donor match.

    Seriously. Hang tough dude. It aint over to the fat lady sings and trust me, everyone here is going to kick her ass out of the building for you. No way she gets up on stage,!

  15. Your openness and ability to tackle a problem head-on, without hesitation have always been an inspiration and I knew you’d approach all this the same way.

    But I’ve never been prouder to count you as a friend.

    I have no doubt you’ll adapt and do it with style.

  16. ezra!

    not sure how i got here, and i don’t know you, but i’m a fan of your pictures on flickr. and of course with flickr, you always feel like you DO know your contacts a little bit – from that little window into their lives.

    i imagine you’ll tackle this, and it seems so already just reading your thoughts, with grace and dignity just as you do in your pictures and bicycles.

    you’re very courageous.

    ~ lauren

  17. ezra. dude. you’re a warrior man. i think of you every time i’m on my bike. which is a lot. all positive thoughts are goin’ out to you and hillary.

  18. I don’t know you –
    actually, I don’t know much
    but I have been an oncology nurse for years ~
    So I know a little about this horrible disease and from reading your blog –
    You have exactly what you need to get through this. The right spirit, sense of humor and loads of people supporting you – Remember to lean on the them – and tell them what you need –

    And seriously – if you have any questions about side effects of the medications or anything – you can ask me.
    Good luck ~

  19. Oh! Oh! I thought of something else! Should you ever go gay, the sex will be more initimate, with more eye-contact!

    Not very likely it’ll come to that, but still, a nice option to have.

  20. I’m so impressed and inspired by your openness. You are willing to share everything and then be totally receptive to the love that flows back. From your fist Flickr post it was not only evident that you’re going to be fine but that you are already fine. Ken Wilbur talks about the difference between illness and sickness. Illness is the thing itself – what is so. Sickness is all the mental and cultural crap attached to the illness. A lot of people get bogged down in the sickness. You seem preternaturally predisposed to rise above the sickness – to deal powerfully with what there is to deal with. That is why you are already fine.

  21. JS- Thanks.. boy, your job must be hellish at times. Being in various wards and etc.. lately I’ve gotten a glimpse of what cancer can do to some people, and it is pretty heart-wrenching. You must be awfully strong indeed. I’ll be in touch if anything comes up!
    Valancy- HA! A great gay friend of mine said, “hey.. at least it’s not a sex organ for you..” Now THERE’s a silver lining!
    Noah- Thanks for that. So much. This notion from Ken Wilbur really strikes a chord. I keep catching a glimpse of myself in the mirror, and thinking.. “shit.. I don’t know.. Do I look sick to YOU?” I sure don’t FEEL sick. But the evidence is pointing hard at the fact that I DO have an illness. Not the same thing.. a good way to understand it. Thanks.

  22. Hey ezra!
    I don’t know you, read about your destiny on a German Bike Blog and I’m from there…I can talk from personal experience, lost a bunch of flesh and part of my sphincter because of abscesses and fistulas and yep, now I am a Kangaroo, like we say here…

    I had my surgery one year ago, three months after I began to ride my bicycle like never before, without the pain I had all the years before.
    My Proctologist by the way, is the funniest Doc I ever met over the years and I had multiple surgeries from other Surgeons before. He helped me alot with his humor.

    Now what I want to say is that you are a true Inspiration for me how you dealing with your Destiny, it will help me to handle my handicap better. I should be more open-minded to other people, like you do. Thank you and my prayers are with you.