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Comments

  • Jackbirdie
    Jackbirdie Member Posts: 1,617
    edited March 2015

    Tortylass- hello chemo twin! Good luck tomorrow. Actually, I know of at least for of us who start tomorrow. The others are Rleepac and Coqui? So we are quadruplets!There is a unique thread for those of us starting our regimens in March 2015. It's a great group where we can closely monitor and support those of us who are in the same moment in life. I invite and welcome you to drop in on that thread. It's a subgroup under chemo before fee, during and after.

  • Jackbirdie
    Jackbirdie Member Posts: 1,617
    edited March 2015

    Beachbum, Morwenna, and Bride- thanks for the heads up on cream and Saran. Will try it

  • gemmafromlondon
    gemmafromlondon Member Posts: 46
    edited March 2015

    SelenaWolf = Well done! Perhaps you should have told your sister to cover her face as it frighteners everybody With such an uncontrolled mouth! Makes one realise how badly those with real disfigurement must suffer from comments like hers.

    Raidergirl - You do just as you please - go to work, stay home, you know how you feel. Though I reckon a few days rest are probably a good idea. Stay strong. You may need extra strength to deal with people's idiot remarks!

    Langandchris - perhaps you should have said to your MO "that applies to you too - what chance is there of you being around if I might need you again'?

  • RaiderGirl
    RaiderGirl Member Posts: 235
    edited March 2015

    I see once again how we are all unique little snowflakes. Many don't like the thought of a survivor appointment but I have read again and again from women on this forum that once the 5 years are up they are cut loose without a rope to hang onto.

    I remember one post that said on her last appointment with the OMD she was pretty much told not to let the door hit her in the ass on the way out.

    I for one wouldn't like a survivor followup. Just to know that I am still being looked after.


  • daisylover
    daisylover Member Posts: 173
    edited March 2015

    RaiderGirl, I have a limit on PM's so I have to wait a couple hours to PM you, but I will! You started a very entertaining thread here. My 6 month appointment will be with the NP - I like her :) No one called it anything special... I believe that I see my MO at the following 6 month appointment. I was told to call if I had concerns (hahaha - every day?).

    Jackbirdie, thinking of you and praying for comfort.

    Regarding chocolate, my fave is this dark choc -1 oz per day, I consider it medicine, (high % cacao, low % sugar) at Whole Foods, Stop & Shop, Market Basket, sometimes Marshall's :

    image

  • Jackbirdie
    Jackbirdie Member Posts: 1,617
    edited March 2015

    daisylover- yum- I've tried that one. It's delish! And my motto, at least in re: chocolate: if not dark, why bother!

    I'm on my way now for first chemo, which in honor of this very entertaining thread, I will report all stupid comments made, and will no doubt commit at least onebof them!

  • meadow
    meadow Member Posts: 998
    edited March 2015

    Nomatterwhat is your mom still in Cox?

  • lastar
    lastar Member Posts: 553
    edited March 2015

    I had this feeling all day that March 5 had some significance -- just realized it's my 3-year diagnosis date. Maybe next year I'll forget altogether.

    Thinking about all the gals starting chemo...

  • meadow
    meadow Member Posts: 998
    edited March 2015

    LAstar that is wonderful! congrats on 3 years!

  • Nomatterwhat
    Nomatterwhat Member Posts: 210
    edited March 2015

    Yes, Meadow, she is.  She needs heart surgery that is only done at Barnes Hospital in St. Louis, but is not strong enough to travel and the doctor doesn't think she will make it through open heart surgery done there.  So we are hoping what is called "private transportation" will be approved by Medicaid and we will try to have her transported to Barnes and pray she arrives alive, otherwise......

  • meadow
    meadow Member Posts: 998
    edited March 2015

    I will PM you

  • mel147
    mel147 Member Posts: 291
    edited March 2015

    Jackbirdie& Tortylass - hope your treatments went well today!

    Daisylover - I've had different flavors of that chocolate and it is definitely delicious!!


  • Jackbirdie
    Jackbirdie Member Posts: 1,617
    edited March 2015

    LA Star!!! Awesome on your anniversary!

    Nomatterwhat- thinking about your mom...you must be so worried.

    And my chemo went pretty well! Very nice place, clean, great care, staff nurses, the head onc nurse was fantastic and met with me for a deep review of my case, and she examined me. She discussed the pain I'm still having from surgery. Amazing. They, "THEY" never willingly talk to me about pain and try to avoid the resulting request for pain meds.

    Anyway, no reactions to any of the infusion meds, my port was tender and hurts a bit. But I'm home, was able to take my doggie for a walk, my bestie is still here, and I have an appetite for the Take out food she just brought home from the Mediterranean Cafe! Bon Apetit! Will hopefully polish off with some dark chocolate. I think I've earned it today.

    Thanks for all of the support today. I sure felt it.

    Katy

  • hopeful82014
    hopeful82014 Member Posts: 887
    edited March 2015

    Katy, you certainly DID earn that dark chocolate! Your bestie sounds like she earned quite a bit, too. I'm SO glad you could have her there with you. And yes, you do get extra points for taking your furry bestie for a walk after all that.

    I'm glad it all went smoothly and that you felt so well cared for. One down and what -3? to go.

    Good luck to both you and Tortylass - minimal side effects, maximum effectiveness these next weeks. Hugs to both of you.

  • lastar
    lastar Member Posts: 553
    edited March 2015

    Way to rock it today, Jackbirdie!

    You gals are so good for my perspective. It never once occurred to me that I might celebrate my diagnosis date. But things are much better than they were on that day and in most of 2012. Onward and upward!

  • TortyLass
    TortyLass Member Posts: 15
    edited March 2015

    Hi guys!

    Katy so glad your first infusion went smoothly and that your pal was with you! :) Your port will be less sore each time. Stay ahead of the game with the nausea meds (set alarms if necessary) and your hydration (at least 64oz/day), especially in the first 72 hours to flush that chemo out.

    My 3rd treatment today went well too. Although, although I did need to gently tell my nurse that I thought she may have missed adding Benedryl to my drip before the Taxotere. She said no, all premeds were given. Then she walked out and returned shortly with a sheepish grin and the Benedryl stating that the ambiguous "she" didn't order it. Yep, always pays to write down your meds and pay attention. The very nice woman I was sharing an infusion room with was appalled that part of my meds were missing and really commented on how I knew about it and let the nurse know without berating her or being snotty. I said, No point in that, we're all human and they're running ragged today. I just paid close attention at my first session and ask a lot of questions. I love the calm that overtakes me when I get the Benedryl and it hadnt happened yet! I only had 3 hours of sleep and just want my mini-snooze!" And we all laughed. :)

    (but just between us here, I also thought she overlooked the Aloxi, so if I end up nauseous this time... You can bet they are going to hear about it!)

    Nomatterwhat - best wishes and prayers to your mom and you!

    LAStar - congrats!!!!!!

    Hopeful and Mel47 - thanks for the well wishes, it feels really good to be past the halfway point!! :). Hrm, remind me I said that in 3 days when I'm moaning about the bone pain! Lol

    Stay strong and fight on ladies!!!!

  • meow13
    meow13 Member Posts: 1,363
    edited March 2015

    Hi jackiebirdie, I'm so glad it went well today. Remember to drink a bunch of water it will help.

  • Jackbirdie
    Jackbirdie Member Posts: 1,617
    edited March 2015

    thank you Hopeful. My best furry guy Jack, passed his canine good citizen test recently (I wax still pretty miserable from surgery and port but we managed) and now he has passed 2 of his 3 independent evaluations to become s therapy dog. He seems a natural at his new job- in a life care facility on Tuesday he got a nearly motionless man who could barely speak to smile from ear to ear. He picked the man out himself, and I just watched the bromance blossom. Haha. Wednesday a very sick cancer patient whispered to me that for just a minute touching Jack's head and ears, his pain went away- for just a minute. I hope I am well enough to do Eval #3 next Wed. I didn't teach Jack anything except down, sit, stay, heel, leave it. Mostly I just driven him to his appointments.

    image

  • Jackbirdie
    Jackbirdie Member Posts: 1,617
    edited March 2015

    TortyLass- a wonderful example of firm but classy. Well done!

    Meow- thanks agsin for sticking with me! I so appreciate it!

    I have had some diarrhea and I sm sleepless again from the steroids. A little jacked up, a little nervy. Might take a clonazepam. I met with the head onc nurse yesterday. She was amazing. I had lots of questions written down in my phone, and instead of making me wait she asked me to start. It was indoubtedly less efficient this way, but it helped me feel a partner in the process. So she filled in a few blanks and said she was very glad I was interested in advocating for my own health care. Ilearned learned a lot of that here. ToryLass showed beautifully how that can be done nicely, with class, but with your own safety ultimately in mind.

    Katy

  • bobogirl
    bobogirl Member Posts: 2,083
    edited March 2015

    You rock, Jackbirdie! You are rockin' it!

    And Jack rocks too!

    RG, I like being called a 'snowflake.' :)

  • glennie19
    glennie19 Member Posts: 4,833
    edited March 2015


    Tortylass:  excellent on being your own advocate!! I hear you wanting that mini-snooze!

    Jackbirdie:  you are a rock star.  And Jack is adorable!!  He sounds like a natural in the therapy dog world.  It is wonderful to bring pleasure to people that way!

  • hopeful82014
    hopeful82014 Member Posts: 887
    edited March 2015

    Katy, he looks sweet and smart and it sounds as though you two are a great pair. I know it's a big commitment to train a therapy dog and applaud you for doing so. I'm sure he gives you a lot of TLC as well.

    I hope today goes well for both you and Tortylass.

    LAstar - it's truly wonderful that you've moved so far past the initial shock of dx., etc. that the date no longer automatically registers. I think that gives some of the rest of us hope, too, that we might find that place someday.

    Have a great Friday, all.


  • RaiderGirl
    RaiderGirl Member Posts: 235
    edited March 2015

    Hey friends

    Guess what? The path report came in. Its nothing!!!! They excised nothing!!!

    Hubby got weepy then I got weepy.

    Thank you for all the good vibes thrown my way.

    It was a good day.

    Stupid comment for the week : " Well, now you know to save yourself all this pain and worry. Refuse biopsies, its usually nothing"

    WTF?


  • lastar
    lastar Member Posts: 553
    edited March 2015

    GREAT NEWS, RG!!!! Oh, there is no escape from the stupid comments, even on the best days! Hopefully the commenter will never have to learn first-hand how ridiculous that statement was. Hope you can celebrate today!

  • meadow
    meadow Member Posts: 998
    edited March 2015

    Yes Raidergirl! Happy for you so happy

  • loriekg
    loriekg Member Posts: 118
    edited March 2015

    Yay RaiderGirl! I am so relieved for you!! Now go enjoy that concert!!

  • Ariom
    Ariom Member Posts: 4,027
    edited March 2015

    Fantastic RG, so pleased for you!

  • Beachbum1023
    Beachbum1023 Member Posts: 364
    edited March 2015

    RaiderGirl, I am so happy for you and your dear husband! That is fantastic news!! I know you will have a great weekend, and celebrate your good fortune. Have fun!

  • MsPharoah
    MsPharoah Member Posts: 224
    edited March 2015

    Raider Girl.....So very happy for you. Wow, what a stupid comment. They say ignorance is bliss and the person who said that to you takes it to the extreme.

    MsP

  • glennie19
    glennie19 Member Posts: 4,833
    edited March 2015


    RaiderGirl!!!!   Excellent news!!!  Congrats!!

    and that was a totally stupid comment! OMG,,,,, idiots,,,,

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