narcotic dayz

The most difficult side effect over the last handful of rounds has been pretty severe joint pain.  It seems to radiate from the upper spine, and effects my arms.. elbows, wrists.  It’s a dull but constant ache.  For a moment or two, not so bad, but after 24, 36 hours it gets exhausting.  Last round, it set in on the thursday following treatment and persisted through the weekend.  I feel I probably mentioned it in a previous post.  I had an MRI of the spine, and it revealed what I already knew.  I have a couple of herniated disks in my upper spine from bouncing around on my head when I was teaching dance.  They flare up now and then, but the quality of this pain is something quite different.

This round had a pretty promising start.  The pain set in immediately instead of waiting until Thursday, and Monday night I didn’t manage to sleep at all.  I went into the office on tuesday and got a dose of benadryl as usual to go with the erbitux, and it knocked me out beautifully.  I slept soundly while getting dripped for close to three hours.  I walked back through the park feeling quite a lot better.  The pain had subsided and I thought maybe that was it for the week.  Yesterday, though, it came back with pistolas blazing.  Today I’m in a lot of pain.  I got out of bed this morning, and got as far as the bathroom..  Took some oxycodone and went back to bed.  The stuff puts me in blissed out daze, which beats the pain for sure, but makes me pretty useless.  Finally got up and started moving around at about 11, filled an Etsy order, ate some lunch, and now the dope has worn off..  at least the part of it that does anything for the pain.  I’ve just taken some more and am planning to head back to bed.  I’m hoping against hope that this isn’t something that will just get worse with each round.

Despite all that, I managed to make dinner for 9 last night, and went to see Glen perform at the City Winery.  It was a late show, but totally worth it (He wrote me a song and performed it, and broke my heart a little.   What a thing).  Also worth mentioning that this round marks the half way point!  Just three more bloody months to go.

All right.  I’m taking my dog, and I’m going to bed.

0 Replies to “narcotic dayz”

  1. This breaks my heart more than a little. I hate this for you, Ez. But the good news is you’re halfway there. It’s all downhill from here.

  2. Keeping you in my thoughts. It hurts to read this, but I need to. Thanks Ezra. You really do inspire people. How is Hillary doing with all this? I’d love to see a post from her.

  3. Ezra, I have you in my thoughts all the time: my GF just finished her treatments on Jan 1 and it impresses me no end how strong you are after witnessing it first hand. I look throughs your old pictures from time to time and it has helped me through some tough times in the past year.
    Sending you positive thoughts each and every day.

  4. Thinking about you Ezra, not much comfort from our words but know that you have a greater web family and we’re thinking about you.

  5. Although I’ve never met you I can feel the agony in your words. I hope the worst is behind you Ezra, and the pain only gets less.
    On another note I just showed my 4 yr old your movie and he said that you “are an amazing cooker”. I would certainly agree!

  6. Keep up the good work Ezra – we are halfway there with you. . .don’t worry about being out of circulation temporarily, someone else will do the heavy lifting (even if its just a spatula.)

  7. I’m sorry for your pain, my friend. I’m thankful that you’ve reached the halfway mark and know you’ll make it to the finish line. It’s closer than it feels.

  8. Here’s some comfort coming your way in a virtual package. As many of your readers here I haven’t met you but somehow you have slid into my everyday thoughts and I really feel for you. Keep it strong, in no time you’ll be feeling a thousand times better.

    An extra package goes to Hill, too, that extraordinary woman.

  9. So sorry to hear about this near constant pain. You are doing so well considering, dinner for 9?!!! And I hope someone videoed Glen’s song for you although I know i’ll weep like a small baby.

  10. You cooked dinner for 9 people? Dude, when I’m in pain, people get directions to the burrito shop around the corner. Delivered in grunting noises.
    You are way more badass than me.
    So you can do this. I know it.

  11. you break my heart. how can we hear glen’s song for you? would love to. imagine its so lovely. glad you got out and had fun. always thinking of you guys.

  12. I wonder if would be as brave as you are! Hoping for you that the worst half is over now, or at least the treatments won’t be affecting that much soon…

  13. i’ve been lurking awhile and am a stranger. stranger or not, i’m feeling so much…i don’t know…good will toward you. hoping wishing and praying for every good thing. for all suffering to cease and pass. for all the best. for the future.

    hang on and keep up the fight.

  14. kay’s words are what i want to say: hang on & keep up the fight, ezra. you can be so proud of yourself. all my best wishes to you and hil – again & again…

  15. Sending you and your family good warm vibes from Brazil. You’ll be fine. Your blog is so important to me for some personal reasons. I’m really proud of you. =)

  16. So heartening to hear that though you’re going through so much, you still manage to see friends and do for others. Amazing. Best wishes that this pain isn’t going to get worse with each round. Halfway through already!!

  17. Ezra-

    I think that part of what marks a really good human being is how much they impact other people’s lives just by being who they are.

    I am blown away by you. Your honesty and strength and humility and good humor and just the goddamn way you live. Like you want it, like it matters, like it’s a precious gift-

    you amaze me and give me hope.

    So this is just to say thank you. Thank you for what you do, and thank you for sharing who you are with the world.

    You make it a better place.



  18. Ezra-
    I was following your stories in flickr a couple of years ago, but stopped a little bit after your first treatment. Had no idea you were in for a second one. Until yesterday. It struck me very much and I will think of you very much again hoping you beat the bastard. It is tough I can’t imagine myself in your place although some dear ones to me passed through this and I witnessed a lot. Must say that a fried of mine just recently beat a brain tumour. She really did. I send you a lot of positive energy so you can add that tiny bit to all the strength you have shown this far. Me and my wife wish you best. Hold on and fight!!!

  19. I don’t comment but I always read your blog. Just wanted to chime in with the others – I’m always sending good vibes your way, Ezra.

  20. Hey Ezra, I just got your photos in the mail. Thank you so much, they are stunning. I hope my contribution helps, even if it’s just a little.

  21. “Despite all that, I managed to make dinner for 9 last night, and went to see Glen perform at the City Winery. It was a late show, but totally worth it.”

    hero. but still.

    go to bed. let them cook for you!!! goddam, duder! sit the fuck down!!!!

    jus’ sayin’. . .

  22. he hee!! no greg.. That’s D.E.C (daniel ezra caldwell). Though, you’re not wrong. I’ve been pretty out of it.
    Glad you like the prints!

    Bob- I hear you man, but I gotta say, being able to cook no matter what my state, is a bit of a point of pride. When you’re otherwise useless, it feels good to be able to muster up the energy at the end of the day to put a meal on the table, even if it’s a simple one. (they arrived, served themselves, and I went upstairs and had a lay down to recharge my batteries.. apparently everyone enjoyed themselves.)

    Thanks all for your comments. I have finally emerged. It was another three days of flat on my back in bed taking meds. But I’m back. New post later this morning, with an all new fast cooking film.

  23. glen wrote you a song? amazing. i think that would break my little heart too… like this post & photo does…

    I am however redoubling my efforts at praying/hoping/believing this too shall pass for you. your fight is always in some corner of my mind…like every time i see a bike ride by… stay strong Ezra!

  24. My mom died from cancer a little less than a year ago
    She never really talked to me about anything she was going through
    But I watched it all happen
    And reading your blog is inspiring somehow
    even though I just lived through all this
    and it makes me really sad to read
    but your courage astounds me
    just like my mother’s did,
    and you give /me/ the courage to keep going
    even though I’m 18 and scared and alone
    Because I’m sure you’re scared
    but you somehow make it through
    and see the light
    whether it’s with a bicycle or a recipe
    And I just want to give you the biggest hug
    because right now you’re my hero.

    Sorry for being cheesy but it’s true. You make my day.

  25. I haven’t checked your blog in awhile and I can see you are really going through hell. All I can say is, I have compassion even though I don’t know what it’s like. I admire your fortitude and your honesty. And I love your appreciation for sharing and living life. You are such a cool person, we are all rooting for you to feel better. Feel better, feel better, feel better soon!

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