I’m sorry for radio silence

I’ve been busy working out my wardrobe.  Well.  That’s not entirely true.  But we might as well discuss it.

The stoma is just above my waistline..  Just above the spot that my pants tend to hit.  Which means that the bag hangs down below.  Or, in other words, the waistband of my pants hits about mid bag.  So.  If I want the bag to be inside my pants (and this is nice to do sometimes, to avoid scaring small children and generally grossing people out..  my first delivery of bags came, and due to an error in product number, they’re all clear!  the sort they use while you’re in the hospital to better monitor what’s going on..) I can’t hold my pants up with a belt.  Nor can I wear pants that are tight enough to stay up on their own.  If I do, I’ll constrict half the bag!  So, SUSPENDERS obviously!  I’ve always loved suspenders.  But I’ve never quite felt I could get away with wearing them..  There was always also the small problem with suspenders that if you wear a shirt OVER them, and have to get your pants down in a hurry, you can be in REAL trouble.  I no longer have any compelling reason to EVER get my pants down in a hurry!!!* As long as my pants have a fly, I’m AOK.  So these days I’m rockin’ big pants and suspenders.  Since I’m about 10 lbs lighter than I was before surgery (and more than 20 lbs lighter than I was when I finished chemo the last time!!), all my pants are big pants at the moment.  As I fatten up again in preparation for the next round of chemo, I may need to get some more pants. I’m also wearing maxi pads!  The perineal incision continues to drain, and without something in there to catch it, I’d soak through a pair of pants in no time.  The great thing about maxi pads is that they have a sticky side!  So unlike gauze pads or something similarly medical, I can stick them strategically to the inside of my pants and get on with my day.

When I last wrote I was dealing with an infection.  It seems to have cleared up with a week long course of antibiotics.  I saw the surgeon yesterday, and he was very pleased with how things are going.  My stomach incision is pretty entirely healed!   The scar is still quite red, but there’s no pain.  There’s no pain at the stoma either.  My ass is taking forever, though.  He explained that this wasn’t that unusual.  A lot of the tissue that they pieced back together there, after removing all that they removed, was tissue that had been heavily irradiated two years ago in preparation for my original surgery.  He said that tissue that’s been exposed to so much radiation can take MUCH longer to heal.  The bright side of this is that they can’t start the chemo until I’m well healed.  The surgeon said yesterday that he felt we needed to wait at least 3 or 4 more weeks.  Music to my ears!  On the less bright side, I continue to be in quite a lot of pain with it.  Sitting is uncomfortable.  Lying down is ok, but only for so long.  My possible lying down positions are limited by concerns like the bag, and the flexibility of the ass incision..  I’m waking up a lot in the night.

My spirits are good.  Or, at any rate, I’m not depressed.  I AM a little lost these days.  Bored, but not finding the right thing to keep me occupied.  During the spring and summer things felt like they were headed in an exciting direction for me.  I felt as though I was really hitting my stride with the bikes.  I had made a string of bikes that to me, in subtle ways, were really getting to be pretty beautiful.  It was feeling as though it was time to get a bigger space, to put myself in a position to be able to up production.  I had a few ideas developing around the fenders, and etc..  It had always been my attitude that while recurrence was a possibility for me, I was unwilling to allow it to keep me from doing daring things.  I wasn’t going to let it scare me from my ambitions.  Now that I HAVE recurred, however, the equation has had to change a little.  Particularly since the cancer has made it into the lymph system, the question is no longer if, but when will I recur, and how bad will it be, and how involved will treatment be. I visited my oncologist yesterday as well, and he informed me that I’d be getting a port again (obviously), and that this one would stay in for 5 years minimum.  It’s a new game.  Between healing, and the sort of unconscious mental work I’m doing coming to terms with the new rules, I’m pretty tired.

The weather here in NYC has been beautiful.  Cool and mostly dry.  My two out of town brothers came to visit over the weekend, and it gave me quite a boost.  It’s a good time of year to eat!  I guess I’ll probably, FINALLY, get around to writing directions for braising weird cuts of meat!

*in addition to having my ass sewn shut, my penis doesn’t seem to get hard.  The doctors ask about it.

“have you had an erection?”


“have you tried?”

“Um.. yeah.”


“not a thing..”

“not even when you wake up in the morning?”

“no doc..  not even then”

Apparently after this sort of surgery, it’s perfectly normal to have no erectile function for a while whether or NOT you’re ever going to get it back..  Just local trauma.  From the nature of their questioning, though, I think I may be getting close to the time when it would be coming back if it was going to..   Fingers crossed.  Erections are fun!

0 Replies to “I’m sorry for radio silence”

  1. Oh man, brutality. Your honesty is stark but strong. My fingers and toes are crossed for you and Hill on this one brother. Be well.

  2. If anyone can rock suspenders, it’s you! Keep making plans, drawing sketches, listing projects… it will keep you looking forward. Thanks for your frank familiarity with us all. I wish there were something I could do to help.

  3. Most def, looking at the pic, you can rock suspenders. Love your honesty. Yes, hoping your erections come back…until then, there is something to be said for compensatory skills 😉

  4. How funny, your followers are not saying penis prayers for you. Oooommmm!

    I saw this cartoon about cancer – www (dot) johnnycancer (dot) com …. dark but funny…thought you might like to check it out. Just helping to alleviate the boredom. 🙂

  5. You, good sir, rock. Great work keeping the spirits and, er, pants, up. As for keeping other things up, here’s hoping that’ll be along soon!

  6. You can probably rock just about anything you decide to wear, Ez. And don’t worry too much about the erections. Your body has been through a lot, and it’s going to go through a lot more. Things will get better. Trust me.

  7. I’m with Laurie. Your frankness is a breath of fresh air. For Christmas this year I’ll wish for all your moving parts to be moving again. And for greatly improved health in general. Still sending vibes from the Left Coast. 🙂

  8. sending your cock my positive thoughts! the suspenders suit you well! thanks for the update ez it means a lot. lets hang and eat fattening food soon?!

  9. Keeping fingers on both hands and toes crossed for ya, Bro. Getting to see ya Bro’s is important and necessary. I’m happy for ya Ez. Look’en good in your fall color ensembles. Keep on rock’en.

  10. I have several friends in the raw food community begging me to suggest a raw food diet to you. I told them eating that way doesn’t make life any longer; it just FEELS a lot longer. Nevertheless, they asked me to ask you to look into it. And now I’ve passed on the suggestion.

    And give my best to your better half. (No dude, not the top half of your bod. I meant Hill.)

    Set a new speed record for the amount of time it takes to kick cancer’s ass, Fast Boy. Get ahold of me if you need anything.


  11. I feel more relieved to read you again, whew!, First, suspenders are fantastic, no one else like you to wear them!, Then: I feel a little sadness and grief in your words, which are absolutely normal!!! (remember the last weeks that you have had!!!) and that you’ll overcome little everyday, because I know, that you are very strong and brave. Finally, I also will cross all (fingers, feet, hands!) for erections to return to you, because they are fun and no one deserves to live without this fun, pray all! hahaha

  12. five year port sounds like a nicely aged wine or a new indie band. you are fantastic in all ways. thank you for your honesty and humor (!). well i think everyone’s comments above have said my feelings. especially rumon: you break my heart and brighten my day. everyday.

  13. thank you for your incredible honesty.
    you have an attitude for us to be jealous of.
    now get back at cancer for affecting your erection!

  14. as always “daniel” (haha), yer funny and honest. in all seriousness you crack me up. and in all funniness you are serious.

    yer the most healthy guy (paradoxically) havin’ butt cancer notwithstanding, i’ve ever seen!

    mentally and all. good god in heaven, mang. yer gonna make it. no doubt whatso.

    all my best to yer lady as well. my homes norf cackalacky girl.

    heal up good.

  15. I read your blog whenever i can. I’m based in England. Over the years a friend has gone through the chemo, at least 3 times, and a bone marrow transplant and is now doing great. I love your energy and food ideas but was a bit miffed when i read you were wearing suspenders. we call them braces over here, women wear suspenders t ohold up their stockings. Things like this amuse me. My thoughts are with you. Take care.

  16. A good friend of mine found that overalls worked well. Of course, we live in the South and overalls are fairly common (depending on your neck of the woods).

  17. You are a really strong guy my friend, even tired you are a really tough man and I’m sure you will overcome anything. Best wishes, your girl, your family, even all your unknown friends needs you for a lot of time. And it is some kind strange but… crossed fingers for your erections my friend.

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