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.

29 Replies to “erbitux is weird 2.0”

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

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

  3. “….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.

  4. 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. :/

  5. 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.

  6. 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.


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

  8. 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!

  9. 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.

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

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

  12. 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.

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