FOLFOX #2 , Charlie Chaplin, Orville Redenbacher, Eric Clapton and dead baby chickens

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Lori-S
Lori-S Member Posts: 1,277 Member
edited March 2014 in Colorectal Cancer #1
I'm channeling Charlie Chaplan, sound like Orville Redenbacher, listening to Eric Clapton and it tastes like dead baby chickens.


Just to start things out right, I will report that I did again have a reaction to the oxy eventhough pre-meded. Only this time, it got noon o’clock and everyone comes over to me and checks on me. My nurse says “looks she’s almost half way done. Everyone can go to lunch”. Well, wouldn’t you know it, 10 minutes later with only one nurse on duty, there I go. Sheesh. It wasn’t as bad as the first time but, same thing … just a little milder and it only took one 25mg benadryl shot and another try to get me through this time. But, worse part was I felt so bad. The lady across from me was there with her daughter and was going through one of those cry at the drop of a hat days … and then I went and scared the s**t out of her. She was sobbing so bad on the phone to her hubby, I felt just horrible. Maybe they should lock me in a closet for infusions???? She said, “ I thought you were going to die, you lost all your color so fast”. I just told her, aaaaah that was a mild one. I’m ok. So who knows what the onc is going to say next week. I’m going to suggest that I premed the night before too and slow down the drip some more. I think I’m at about 4.5 hours right now, might need to do 6 hours.

So, here goes the rest of the story. I have a friend who stops over to check on me and he dropped in yesterday morning. He’s a classic rock kinda guy so he turns on the stereo and Eric Clapton is singing “Oh my darling, you look wonderful tonight”

hahahahahaha

Enter not foxy but, …. FOLFOXY me … … Here I am trying to stay warm in a big old baggy a white sweatshirt that I cut down the front of my port so that I can wear it with my pump, baggy white sweatpants, carrying my black pump bag over my shoulder, with black socks and black gloves on. I am walking across the tile floors on the balls of my feet like Charlie Chaplan because this time the oxy worked it’s way to a third of my foot instead of just my toes. I have my hands out like a mime because everything was shocking my fingers. I couldn’t even begin to imagine how funny I looked until I shuffled in front of the sliding glass door and caught my reflection. OMG!! With all the static electricicty in the air my hair was standing on end too. SCAREY! “Oh my darling, you look wonderful tonight” … Thanks Clapton.

So, my friend, insisting that I eat decides to make me some scrambled eggs with ham and cheese. I say, you know, I’m not sure I can eat anything … but, I agreed to just so I didn’t hurt his feelings. As I sat down to eat, I talked myself into how good this would taste … one bite … ugh … rough swallow … ugh. “Hey, how is it?” he asks. Ha! “It tastes like dead baby chickens!” … thank goodness he just laughed and said, “Maybe because that’s what it is”.

Here’s a fun side note on the FOLFOX this round. I woke myself up in the middle of the night and there was this strange sound. Like popcorn popping. Oh no … wait … popcorn in my pants? No … the chemo caused such bad constipation this time that my stoma was spitting popcorn sized pellets out and it was hitting against my bag … My first thought was oh boy, Orville Redenbacher would be proud of me!

So there you go … Charlie Chaplin, Orville Redenbacher, Eric Clapton and dead baby chickens. Kinda scarey the way my mind works isn’t it?? So, round 2 and disconnected. Woo hoo! Excuse me if I go throw up now.
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  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
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    Lori
    Is the next show @ 10? Will you be here all week? LOL:)

    Sounds like you are really having an extra rough time with the Folfox - I only made 8 myself before we called it a day, it is some rough stuff.

    Along with slowing down the infusion time - one other thing comes to mind.

    Your onc can decrease the STRENGTH of the dosage - he may be shuttlin' this stuff to you @ 100%. If that were the case, he could adjust the dosage down to 75% or even lower, as your body can tolerate.

    My theory is "better to have some, than not at all." Lowering the dosage would allow you to still receive some benefit from the treatment, which would be better than not being able to take any of it at all.

    And please be sure to report any and all symptoms and conditions to your onc - get it on the record of your file. Side effects from Folfox can become permanent as the cycles continue, so please, please take care of yourself and hopefully your onc will listen and make some adjustments.

    And if Folfox were ever to be discontinued, for any reason, there is always Folfiri to fall back on. Many of us are not that now, after having survived the Folfox Wars.

    Let's see if some adjustment in dosages, can make it easier on you:)

    -Craig
  • Lori-S
    Lori-S Member Posts: 1,277 Member
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    Sundanceh said:

    Lori
    Is the next show @ 10? Will you be here all week? LOL:)

    Sounds like you are really having an extra rough time with the Folfox - I only made 8 myself before we called it a day, it is some rough stuff.

    Along with slowing down the infusion time - one other thing comes to mind.

    Your onc can decrease the STRENGTH of the dosage - he may be shuttlin' this stuff to you @ 100%. If that were the case, he could adjust the dosage down to 75% or even lower, as your body can tolerate.

    My theory is "better to have some, than not at all." Lowering the dosage would allow you to still receive some benefit from the treatment, which would be better than not being able to take any of it at all.

    And please be sure to report any and all symptoms and conditions to your onc - get it on the record of your file. Side effects from Folfox can become permanent as the cycles continue, so please, please take care of yourself and hopefully your onc will listen and make some adjustments.

    And if Folfox were ever to be discontinued, for any reason, there is always Folfiri to fall back on. Many of us are not that now, after having survived the Folfox Wars.

    Let's see if some adjustment in dosages, can make it easier on you:)

    -Craig

    Hey Craig
    Thanks for the decrease in the dose suggestion. I'll bring it up. Yep, FOLFOX is some nasty stuff. I guess under the circumstances it's a good thing to have an already warped mind. Thanks for your support.
  • Luv2lunch
    Luv2lunch Member Posts: 270
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    Lori,
    You should really

    Lori,
    You should really think of doing a comedy when you are cured. You really make me laugh. Maybe the next Rosanne Barr, just younger, skinnier, and prettier, lol. You could be the cancer survivor with the comedy routine.
    Hope you are feeling better and stay away from the knives :)
    Linda
  • AnneCan
    AnneCan Member Posts: 3,673 Member
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    Not scarey so much as funny
    Lori you are keeping us entertained. I love your story-telling style + the way your mind connects various tales. I hope you feel better soon.
  • Kenny H.
    Kenny H. Member Posts: 502 Member
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    AnneCan said:

    Not scarey so much as funny
    Lori you are keeping us entertained. I love your story-telling style + the way your mind connects various tales. I hope you feel better soon.

    LOL Lori...
    Wow makes my

    LOL Lori...
    Wow makes my side effects seem so minor now. Maybe you do need an adjustment.
  • Lori-S
    Lori-S Member Posts: 1,277 Member
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    Kenny H. said:

    LOL Lori...
    Wow makes my

    LOL Lori...
    Wow makes my side effects seem so minor now. Maybe you do need an adjustment.

    Hey Kenny????
    You trying to say I'm maladjusted??? hahahaha Tell me something new.

    Glad that you're doing better than I am. I'd never wish this on anyone.
  • maglets
    maglets Member Posts: 2,576 Member
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    Lori-S said:

    Hey Kenny????
    You trying to say I'm maladjusted??? hahahaha Tell me something new.

    Glad that you're doing better than I am. I'd never wish this on anyone.

    my darling girl
    Lori....you are wonderful tonight!

    oxy is the very devil....it is so hard...the fact that you can post with such an amazing sense of humour testifies to your great strength. You hang in there baby-cheeks....

    I hate oxy but Lori....it has to do some good....I know it will....it did for lots of us...

    hugs and hugs

    mags
  • LOUSWIFT
    LOUSWIFT Member Posts: 371 Member
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    HI Lori
    Well made it through #3 and got unplugged today. The gave me a shot for low white cells and warned about bone pain. Bone pain you mean there is another sensation of pain we have not had yet? Anyway you are still having it worst than I am. I am really sick today didn't eat and took a slip of room temp tea which tasted well you know. My lips and tongue went into pins and needles mode and hand sensitivity returned. Really really tired but can't sleep. Just had to respond to your post but need to stop typing. Hope you feel better get them to drop your dose. hugs Lou
  • Lori-S
    Lori-S Member Posts: 1,277 Member
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    LOUSWIFT said:

    HI Lori
    Well made it through #3 and got unplugged today. The gave me a shot for low white cells and warned about bone pain. Bone pain you mean there is another sensation of pain we have not had yet? Anyway you are still having it worst than I am. I am really sick today didn't eat and took a slip of room temp tea which tasted well you know. My lips and tongue went into pins and needles mode and hand sensitivity returned. Really really tired but can't sleep. Just had to respond to your post but need to stop typing. Hope you feel better get them to drop your dose. hugs Lou

    Lou
    Know that feeling, so tired but can't sleep. I can't begin to count how many times ... I think I yawn every minute or so. Get some rest and take care. HUGS
  • Crow71
    Crow71 Member Posts: 679 Member
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    totally funny
    Yer giving me Oxi flash backs. My onc will probably recommend that I go back to Oxi since Folfori has failed. But you have inspired me to get with the Lisa42 plan and find a trial. I ate dead baby chickens for 6 months, but they never came out like pop corn!!!

    Don't reduce the dose yet unless you have to. You can do it.

    When's your next scan?

    Keep kickin' ****!!!

    Roger
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
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    You are something!
    Dear Lori,

    There aren't many out there who could have a day like you did and still find a way to make it so very funny.

    I think it is about time that the chemo nurses at least give you a volunteer to sit with you to watch for any future reactions. Too bad about the lady who got scared but from what you said sounds like she wasn't doing too good before you had your reaction.

    No closet for you young lady...tell them to reserve you the best seat in the house!

    Hoping that you get some relief soon from the side effects.

    With posts like this you should write a book about your experiences. Would make a fortune and give future patients a big laugh.

    Hugs,

    Marie who loves kitties
  • OGammy01
    OGammy01 Member Posts: 67
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    Hi Lori, You are just so
    Hi Lori, You are just so cute! I love to read your posts, they really pick me up. To make this terrible thing we are all going through seem funny is quite a talent. Don't ever change.
    Hugs, Diane
    P.S. You really should write a book!
  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
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    Oh, my. I feel so bad for

    Oh, my. I feel so bad for what you're going through right now, but you certainly made me laugh with that story! I really wish that Folfox was treating you better... Maybe they'll reduce the dosage a bit like Craig suggested. All my best, and I hope that you're feeling better soon. Big cyber hugs around you! () and take care, Cynthia
  • stratplayer
    stratplayer Member Posts: 42 Member
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    You remind me of the comedy
    You remind me of the comedy writer on the Holister web page.
    She has written some good stuff and so have you.
    We all think we are tough when they hang the 5Fu and Oxcillaplatin, but it all boils down to your walk with God.
    His phone never rings busy. You can always get through. Just leave a message.
  • okthen
    okthen Member Posts: 232
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    You remind me of the comedy
    You remind me of the comedy writer on the Holister web page.
    She has written some good stuff and so have you.
    We all think we are tough when they hang the 5Fu and Oxcillaplatin, but it all boils down to your walk with God.
    His phone never rings busy. You can always get through. Just leave a message.

    Hey Lori!
    I hate that you

    Hey Lori!
    I hate that you are hurting so much! It is so hard to watch this happening to Jack, and then because Im following you and Lou, I just want to cry for you all. I can tell by your posts you're one strong woman and you will get through this, as will Lou and Jack...and the millions of others fighting the big fight.

    Sorry to be so serious, it's just so hard to watch and not be able to make it better.
    Ha, Jack actually told me to quit coming home with bags of creams, heating pads and every butt wipe I can find that says "sensitive, hypoallergenic or Aloe" on the box. Concerned we're gonna go broke...but until he's smiling I'll keep looking for "it" the thing that will help him be comfy.
    Wishing Comfy for you and Lou too!
    Chriss
  • herdizziness
    herdizziness Member Posts: 3,624 Member
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    I'm Blond
    I got lost in the first or maybe second or maybe third part.
    Anyway, the part when the friend comes in, and your still lovely in his eyes (well, however the story went, this is the part whether I made it up or not counts) was just wonderful!!!
    So honey, lay off the meds or chemo, whichever doesn't give you dead baby chicks would be cool.
    Love at you!!!
    Winter Marie
    P.S. Hoping your sanity is in place as well!!!!
    Sorry, ROFLMAO!!!!
  • jararno
    jararno Member Posts: 186
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    Wow....Sorry you had another reaction! ( I'm getting itchy just reading about it! ) I was very lucky as my reaction came on the 11th infusion. Lowering the dosage sounds good and maybe slowing down the infusion ( like you really want to spend more time there! ) At least the crying lady got a free floor show??

    Your attire sounds great....we have all been there! Whatever gets you through!

    The dead baby chickens sounds familiar. ( In Japan they have a dish called "Mother and Child".....it has chicken and eggs! ) Glad your friend has a great sense of humor! The only thing that I could taste was sugar!!! (Twizzlers seemed to be my friend!!)

    The "Popcorn" sounds really wild! No bag for me, but my anti-nausea meds caused severe constipation resulting in "turtle eggs" and the 5FU gave me the trots.....not a good combo!

    Hope you are feeling better....The Nausea thing is so much fun! ( My friend almost wrecked her car trying to get me out of it before I slimed everything! I had buckets stashed everywhere and little blue, round vomit bags in all our vehicles! ) The Sancuso Patch and Emend pills helped greatly with the nausea, but are both obscenely expensive.

    Your sense of humor is great...

    Take Care,

    Barb
  • Lori-S
    Lori-S Member Posts: 1,277 Member
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    Crow71 said:

    totally funny
    Yer giving me Oxi flash backs. My onc will probably recommend that I go back to Oxi since Folfori has failed. But you have inspired me to get with the Lisa42 plan and find a trial. I ate dead baby chickens for 6 months, but they never came out like pop corn!!!

    Don't reduce the dose yet unless you have to. You can do it.

    When's your next scan?

    Keep kickin' ****!!!

    Roger

    Hey Roger
    Next scan is towards the end of January. Problem is I have an severe allergy to the IV contrast ... wouldnt ya know it? Makes the scans lest than good wihtout contrast but, I think we'll try pre-meding for them so we can use contrast next time and get a better look. and that will be after 3 months on FOLFOX so we'll be hoping that there are some changes in the scans (good changes!)
  • Lori-S
    Lori-S Member Posts: 1,277 Member
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    I'm Blond
    I got lost in the first or maybe second or maybe third part.
    Anyway, the part when the friend comes in, and your still lovely in his eyes (well, however the story went, this is the part whether I made it up or not counts) was just wonderful!!!
    So honey, lay off the meds or chemo, whichever doesn't give you dead baby chicks would be cool.
    Love at you!!!
    Winter Marie
    P.S. Hoping your sanity is in place as well!!!!
    Sorry, ROFLMAO!!!!

    Winter Marie
    Sanity??? What's that?
  • Lori-S
    Lori-S Member Posts: 1,277 Member
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    Thanks!
    Really thanks everyone for your support and for taking the time to read my whacky postings. They do help me keep my sense of humor. When the oxy is really bad and it takes me all day to type out a posting, I just go to the computer and write down a word or two that describes my experience and later weave them together. It really does help me.

    Linda, no knives this time ... yet.

    Anne, It's ok ... I'm doing this just fine thanks to all you guys here for me. Not fun, but funny?

    Mags, Yep, they say this stuff is good for me ... so ... see above ... not fun, but funny.

    Marie, Yes, they did give me a volunteer who was sitting next to me so, that is who located the one nurse. Good thing too.

    Diane, thanks for your support. If I decide to take my show on the road could you possibly help me fill a small lounge for my comedy act?

    Cynthia, don't feel too bad for me. I'm not the only one that has trouble with this stuff and I have you guys here for me so I think I'm pretty darn lucky.

    Stratplayer, wanna hear something funny? My friends always ask me why I don't watch sitcoms and I tell them because I always know what the next line is going to be. May have missed my calling as a comedy writer?? Not to worry about calling God. I've done that and lucky for me he answers to all kinds of exclamations! Don't even have to call him by name. That's pretty cool.

    Chriss, Thanks for checking on me and I do appreciate your feeling for me but, I'll be ok. I'm a pretty tough cookie. My friends even say that I'd probably drive myself to my own funeral and someone will have to convince me to lay down and go home. (is that ok to say?)

    Barb, Thanks for the compliment. My sense of humor has gotten me in and out of trouble my whole life. Hope it gets me out of this cancer trouble!

    Hope I got everyone ... cause I really do apreciate each and everyone of you guys so much. GROUP HUG ... Feel the love!