erbitux is weird 2.0

I guess I felt it coming.  The erbitux is flaring up.  Amazing how I can go from looking more or less ok, to looking like a leper over night (no offense to any lepers out there).  The latest weird side effect is a considerable amount of discharge from my eyes, which gets all matted up in my lower lashes and dries out there over night..  It takes a good long soak in the morning and a little picking to get it all out.  Yuck

Meanwhile, another round down.  Just two to go.  This one has followed the progression so far of each being a little worse than the last in terms of the pain level.  It takes meds every 4 hours or so to keep it under control.  This is a little problematic at night.  I’ve learned to more or less sleep through it, but if I wake up to pee during the night, or when I inevitably wake up in the morning, I’m in agony..  have to take meds and wait.  I could set an alarm during the night, but my sleeping has been so touch and go, that I hesitate to wake myself up!  (sleep over the last couple of days has been no trouble, however!!  I slept for about 4 hours after my tuesday treatment with benadryl, and then yesterday after getting unplugged, came home and sacked out from 1 until 6!)  Going to see if I can be a little more active today.

That’s all.  Still here.  Still trundling along.  Looking forward to seeing the back of this nonsense, and having a little energy to make stuff.

Big love.

One Response to “erbitux is weird 2.0”

  1. Valancy Jane

    Goodness. That looks un-fun.

  2. Heidi

    Only two left! Thank goodness. We’re anxiously doing the countdown with ya! [Taps fingers impatiently.] Hang in there.

  3. Sasha

    I’ve heard that baby shampoo is supposed to make it easier to wash away dried eye gunk. Best wishes to you and Hillary!

  4. Brandon Wilson

    Almost there E. I too anxiously await the countdown.. <3

  5. franck (One Happy Cog)

    Hang in there Ezra, we’re thinking about you and send you lots of love.

  6. burnt umber

    “….but if I wake up to pee during the night….”

    Dude, at least you can still wake up and walk to the bathroom to pee. That has to be a big plus right about now. There is a sunny side to every dark spot in the sky.

    You are a tough old bastard even if your only just 30! Ort is it 31? 32? How long has this shit been going on?

    Be well.

  7. eddy

    you look like buster keaton.

  8. Claire Williamson (Hall)

    Two to go, two to go, two to go…whoop whoop! Sending you lots of love Ezra!

  9. Patrick

    Not sure if you like Sarah Jaffe but I can send her new album to her if you are up for it. She’s from Denton.

  10. Christina

    Yowzers. But the end is in sight, thankfully. Glad to hear it. Big love back to you. My friend starts her radiation treatment soon. Next week she thinks. Then it’ll be on to the chemo. Perhaps two kinds. :/

  11. Paul

    Ugh. Finish line’s in sight. Continued, uniterrupted mojonation from Philly. p

  12. Abby

    unsolicited advice of the weird — you have lots of friends. know any nursing moms? breast milk is phenomenal at dissolving eye gunk of any sort. sorry if that’s tmi and vastly inappropriate, but the stuff is amazing.

  13. greg & oksana

    lots of love to you from us. lots and lots.

  14. RonMH

    Don’t use the baby shampoo method unless you dilute the baby shampoo with water. The best, however, is a product called “Ocusoft”. I prescribe it all the time for patients with inflammatory lid condition such as blepharitis. The ocusoft “soap” is gentle on the eyes and works well to clean away debris. You can get it over the counter at virtually any decent drugstore.

    Also, keep up the fight. You have many supporters in your corner.


  15. Becca

    For some reason I just can’t visualise you “trundling along”…in my mind you can fly and have a cape… ;)

  16. Eric

    come on, ezra, two last rounds to go – all the best for you, i know, you can manage it…a big greet from northern germany with lots of love!

  17. Marta

    thinking of you. everyday. love.

  18. maggie

    it is amazing to me that something so obviously bad for you, poisonous even, could be a thing that does good!! keep fighting the good fight, lots of love from MA.

  19. Silvino

    Keep the good fight my friend, eventually you will win, all the best wishes and a great hug.

  20. Rob Oresteen

    Ezra – my best to you…hang in there my friend..

  21. Gabe McGraw

    Thanks for sharing this vulnerable part of your life with the world. You’re an inspiration and a giantkiller. Cheers!

  22. MochuELIn

    Siento mucha pena de verte asi, quiero que pronto estés bien. Por favor, sé fuerte. Abrazos enormes

  23. Alicia

    Almost there!!!!!!! I’m sending you some force to you via airbone midi-chlorians.
    Lots of love.

  24. Alicia

    Wash off the eyes with some clear serum. It will do wonders.

  25. Cyclin' Missy

    Only two more! More good mojo coming your way…

  26. penny

    ha! i love the breast milk comment. it does do wonders, but i have to admit i’ve never used it to dissolve eye gunk. keep fighting the good fight. you’ve sure got a lot of folks in your corner. sending healing thoughts your way.

  27. Ivanna Wei

    Much love to you, friend.

  28. Ivanna Wei

    Much love to you, friend.

  29. stephanie

    Hope you’re doing OK — it’s been pretty quiet.

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