Starting Chemo March 2015

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited July 2015

    yes I only wish I could guarantee the stealth farts only happened in bed....

    My world last couple of days- still feeling bone and other various pain and nausea/vomiting, unusual for me. BUT. Enjoying my post from which I can be entertained by nature, my furry buddies, and technology.

    The pics are for Lee, who said she'd be needing a Cutie Patutti and Jack fix. Thinking of you Indygal

    Tutti turning in to quite the tennis fan. Sorry if any of the info and pics are repeats. My IQ has dropped 100 points.

    image

    image


    image

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  • ninjamary
    ninjamary Member Posts: 306
    edited July 2015

    I don't get into much of my personal and work life, but today has been a doozy. Someone posted this video on FB and it has relaxed me, made me laugh and I think I might have to listen to it every night before I go to sleep. If you have issues with the F word...don't even bother with it. I know some of you will enjoy it.

    https://player.vimeo.com/video/132790897



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  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2015

    OMG - hilarious and perfect! This is what my Mindfulness Based Stress Reduction study was about - minus the f-bombs!

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited July 2015

    OMG MARY!!!

    This is the guided meditation for me! Relaxed me AND made me laugh. Thanks for making my day.

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  • Italychick
    Italychick Member Posts: 2,343
    edited July 2015

    Love the line "the three-ring shit show of your life" - 'nuff said. Appropriate with our new poop charm on the charm bracelet - metaphorically and physically!

    Wow, I so went deep there lol. Loved the video. And even though they cussed a lot, it still calmed me down - go figure!

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  • Trvler
    Trvler Member Posts: 3,159
    edited July 2015

    I wanted to share something I heard this afternoon on Dr. Laura. She was talking about a friend of hers whose son had died (I gathered from an illness). She told her some of the idiotic things people said to her after he died like 'He's in a better place now'…you know. The kind of stupid comments we hear. Anyway, she basically said she was in the mud and all she needed was someone to be there in the mud with her because nothing anyone SAID was really going to make her feel any better. I thought it applied to us. We need someone to just be there in the mud with us. So here's to you, my fellow pigs! :)

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  • ksusan
    ksusan Member Posts: 4,505
    edited July 2015

    Love your tennis cat! I thought of you today. I was outside getting my 15 minutes of Vitamin D exposure and a hummingbird (a female Anna's, I think) buzzed me! I was in a red chair, which might be why she got so close.

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited July 2015

    oink oink

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited July 2015

    Hair Check:

    image

    Still losing brows and lashes, but hair seems to be making a comeback!

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited July 2015

    Hair! Oh my god you have HAIR!

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  • IndyGal35
    IndyGal35 Member Posts: 340
    edited July 2015

    Amazing, Kati!!!

    Thanks for the perfect pet pictures. There's nothing better than furry companions. It really cheered me up. Im still hurting but I'm managing. I finally gave up on being a pain warrior, and I started taking my full prescribed doses of Valium and Percocet. I also started Benadryl since the Percocet was making me itch like crazy.

    Love the charm, and OH MY, Mary, where did you stumble across that video? That would've saved me from steroid rage on my chemo nights. :)

    You guys are the best.

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  • ksusan
    ksusan Member Posts: 4,505
    edited July 2015

    Nice hair!

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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited July 2015

    Ladies, the bracelet is awesome, and personal and hilarious all at the same time!! Love it! I can't wait to see the checkered flag at the finish line, or will it be a trophy, or the damn ringing bell, or the diploma? I guess it depends on who has it last. But nice to have something so fun to look forward to! Cheryl

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  • eheinrich
    eheinrich Member Posts: 792
    edited July 2015

    Katy, yay hair!!!

    I've mostly kept my brows, eyelashes are at about 50% - not complaining.

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  • Meme117
    Meme117 Member Posts: 194
    edited July 2015

    love the poop charm - way to go E!

    I'll have to watch the video tomorrow and report back.

    Love kitty playing tennis and yeah for your hair buds Katy.

    Feeling bit of stomach issue but nothing like before, after 5 treatments I switched nausea meds. I think the other med was what was making me bloated. So tired today I took a 4 hour nap. Last neulasta shot today - yippie!!

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited July 2015

    Cheryl- Great ideas for upcoming charms!

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  • rleepac
    rleepac Member Posts: 755
    edited July 2015

    I might add a chicken charm in honor of my baby chicks that hatched out a few weeks ago and make me so happy. Haven't decided yet.

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited July 2015

    Bekah- love the idea! A metaphor for learning to re-appreciate the things in life, not related to c, that make us happy. I'm so glad your little chicks do, regardless of the bracelet

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  • Leighrh
    Leighrh Member Posts: 317
    edited July 2015

    I once again have hair envy... Katy.... It is really coming in!!! Looks almost LONG! LOL. Haven't watched the video yet, I am at work but will watch in the chair this afternoon :) #4 Taxol. 1 month down.. 2 to go..........

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  • Trvler
    Trvler Member Posts: 3,159
    edited July 2015

    I have about the same amount as Katy but what is driving me nuts is, I can't tell if it is new or what was there before. It seems new but I only started checking it 2000 times a day a couple of weeks ago. I have some longer hairs that I know are old, but now most is short and fuzz.

    Eyebrows are going and coming at the same time. lol. I have tiny new hairs and existing are falling out. Eyelashes are about 80% gone.

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited July 2015

    Leigh- you will need earbuds to listen! Just sayin' ... (some bad words). you will be ROFLYAO!

    Perfect antidote to the chair!

    Smooth sailing today.

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited July 2015

    Allison- I think some of mine is older too, but if I compare pics from a week to two weeks ago, I see a slow change. Probably more is happening than you think! Have you tried the meditation video? That might help! Haha

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited July 2015

    ABOUT BEING DONE

    ok, I need to vent. I'm trying to stay upbeat, but I am two weeks PFC, (and everyone in my non bco life keeps saying "but it's over, now!") and I hurt. It's not fucking over.

    1-I just went to the bathroom and it hurt so bad I cried. Again. Bleeding. Again. Because it seems to be flipping between bad, naughty D and C, I haven't been keeping consistent with the colace and senekot. So it rips me up every third day and I'm bleeding. And crying. Did I mention that???

    2- if I walk across the room, I'm out of breath

    3- my fingernails hurt and look nasty and I think they're going to fall off- I become acutely aware ofthis doing something as simple as trying to pull the bedsheets up.

    4- my toenails hurt and feel tender and I think they're going to fall off

    5- I open my mouth and my brains fall out. My IQ must have plunged 109 points with chemo brain

    6- I.hurt.all.over. STILL. it hurts just to touch the skin in my body, pretty much anywhere. Pain radiates from inside my bones outward, and radiates inward from touch, and the blasted surgery site, now 7 months later. I stopped PT till chemo stops hurting. I just couldn't fight the battle on both fronts and pt hurt so much I was crying through entire sessions when she worked on scar tissue. Unfortunately, I feel myself going backwards, rom -wise, and pain-wise. I need to give my body time to heal in one area, and feel myself slipping elsewhere.

    7- my mouth still has little sores, despite the lysine and baking soda

    8- I have another rash in the bargain basement, and painful cracks that keep breaking open on my lips

    9- dry and watery eyes, simultaneously, and even with a new prescription a month ago, either chemo has caused the cataracts to get a lot worse or chemo is just affecting my vision. Either way, I can hardly see. I squint at a 42" TV from 8 feet away, with my new glasses on.

    10- I have neuropathy in hands and feet. It's worse in my feet, and I still have feeling, and I'm not falling, but it feels very odd, a combination of numbness, pins and needles, and weirdly, pain. And it's getting worse, PFC, not better. Ugh.

    These complaints aren't necessarily ranked in order of their troublesomeness. Except for the first, which still hurts and probably will for hours.

    Meantime, I am gaining weight, food tastes bad, coffee tastes bad, and I used to really enjoy that first cup in the morning, and basically, bc has left an awful taste in my mouth.

    Hot flashes so bad my almost bald head gets covered in sweat. This can happen at any time of day ornight, with or without a detectable trigger.

    If I open a book and try to distract myself with a little reading, I am asleep in 15 minutes. The fatigue is overwhelming and I can't fight it off.

    I know I'm "done". Whatever that means. But it appears I am not moving on. Yet. It's a tremendous battle of mind over matter and I'm losing.

    And oh. Really looking forward to starting Tamoxifen any day now.

    And having another procedure to get this stupid port out, which has never stopped being sore, never stopped being bruised. But they will NOT take IT out without putting ME out. I am so done with pain. So finished hurting. It. Is. Not. Fucking. Over.

    I tried to remember everything do I won't complain again. At least not today. Thanks for letting me.

    Rant over.


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  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2015

    jackbirdie - I am so sorry you are struggling on so many fronts. Unfortunately it is too soon to see relief but it will happen. You know how to handle your pendulum swing between D and C - I used aquaphor in those areas to handle all the cracked skin. If your nails hurt you might try actually taping them down with paper tape - it helps with the pain caused by jostling. The improvement from bone pain, chemo brain, taste bud regeneration, etc., is a slow process. I know you want to feel better now but honestly, you won't. Can you get some Mugard or Caphosol for the mouth sores? Both are Rx. I would also NOT start Tamoxifen for at least a month. Wish I had a magic wand and could make this all better

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  • rleepac
    rleepac Member Posts: 755
    edited July 2015

    Oh Katy ;(

    I wish I had some words of wisdom but I just don't. I can just say that you're welcome to vent anytime.

    Bekah

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited July 2015

    thanks Bekah and Special,for the tips and support. It did seem to help to write it all down, until I just couldn't think of one more thing.

    Knowing you guys completely get it, and have been through it yourselves, is a gift. thank you

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  • IndyGal35
    IndyGal35 Member Posts: 340
    edited July 2015

    Oh, Kati. This is all so normal for what you've been through. Your body is still pushing out the last of the poison, and it will take a while to be gone. If you're like me, you look at those lingering side effects as a personal failure. We can't do that. None of this is our fault, and we are doing our best to recover! :(

    Maybe you can keep a dailylog starting today. Write down your symptoms and grade them on a scale of 1 -10. It might make it easier to see your progress. Also if something isn't going away or gets worse, you have documentation for you MO.

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  • ThePrincess
    ThePrincess Member Posts: 424
    edited July 2015

    Katy - I'm sorry you still feel so badly!! BUT the corner is coming! It is coming! Hang on!

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  • Leighrh
    Leighrh Member Posts: 317
    edited July 2015

    Hugs Katy!!! I know it seems like it will never get better, but it will............. keep swimming!!! :)

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  • eheinrich
    eheinrich Member Posts: 792
    edited July 2015

    It is frustrating that people think that on your last chemo day it's over and yay back to normal. There are still side effects from that last round & if yours are cumulative that may be the worst round.

    It will get better Katy. ((hugs))

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