Support for our sister ABeautifulSunset!

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited August 2019

    Can they come to your house for the lumbar puncture, or do you have to go to the cancer center and if so can you get special transport to minimize the difficulty? I have a secret hope the fluid will be Her2+ and a drug for that will work your miracle.

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited August 2019

    There you go, what a great idea (her2+++)!! But short of that, there are people who have ambled into a clinical trial in bad shape only to hit on something that just works well, so I hope for more options

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  • Daniel86
    Daniel86 Member Posts: 271
    edited August 2019

    Sunset, sending our prayers and good thoughts your way too. I am amazed and inspired by your strength.

    If it's of any encouragement, the poster that goes by Ihopeg has been in treatment for lepto mets for at least one year and still going (and she is TN!!).

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  • JFL
    JFL Member Posts: 1,947
    edited August 2019

    Sunset, I have known you as ABeautifulSunset over the last few years and knew you as Stefajoy before then but must have forgotten along the way that you changed your screen name until Sandibeach mentioned it. I wasn't making the connection that those two screen names were the same person. I remember when you first joined the Stage 4 forum, shortly after I joined. We must have been on Ibrance at the same time, back in the early stages after it was just approved, when Hope and others were taking it. I remember your DH is a doctor, like mine, and that you one time posted a beautiful pic of yourself in a dress and when everyone complimented you on it, you said that you never dress up like that and we were all surprised . . . . Now, if only my short-term memory were that sharp!

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited August 2019

    -thank you all for remembering.Stefajoy. She (me) was active for about three years here before I changed my screen name. Hope was the first person I met on the Ibrance thread. Her death was a huge blow to me. I've always been grateful for my "extra" years. I've had some amazing time getting to know my kids as they became adults.

    The lumbar puncture was not all I expected. It did confirm that I have LM. It did not and will not produce enough cells run any thing on it. So I still don't know about possible changes. Back in April there were none. I guess after 8 years, we'll just assume that's correct. I am starting intrathecal chemo (directly into spinal fluid) as soon as possible. In the meantime I have a day caregiver and a night caregiver. I live in a hospital bed in the living room where my kids get to come visit me. It's quite a life change from the fit and active woman I was. My goal is to get out of this bed and into a chair easily so I can move around independently.

    My prognosis with LM is 2-4 months. Hoping I can be aggressive and turn that into 6 months of more independent living. My 22 yr old son has been a shining star, my husband is a worrier and I'm looking for a good therapist for my dd, who is 18 and holds everything in. I've earmarked all of my good jewelry.

    A mother's work is never done.

    Sunset, Stefajoy, Stefanie


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  • candy-678
    candy-678 Member Posts: 3,950
    edited August 2019

    Sunset- Prayers for you from here. God Bless You.

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited August 2019

    Your kids are lucky to have a mother who exemplifies love, courage and grace under pressure. That model will always be a part of them, and they will draw on it forever. It's funny how our different children handle things so differently, I am sure your instincts will be right on how to help them. I think your goals sound realistic and doable. I hope that chemo works to provide relief and time. I will visualize you rising from that bed!

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited August 2019

    Sunset, I remember Stefajoy, too, but couldn't put my finger on that old screen name when SandiBeach mentioned it. I remember changing mine about the same time you did bc I didn't think mine was private enough. The news you have gotten is such a gut punch, but you are strong and I'm rooting for aggressive tx to give you many more independent months. Sending you warm hugs, comfort and love.

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited August 2019

    Oh, Stephanie all this is heartbreaking- my son is 28, my daughter 23, and I breathe to be here for them, am sure you are the same. I am glad to have had some advance warning, try to help them fly into the future.


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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited August 2019

    Sunset. I haven't known you as long as many of your other friends here. You have so many.

    I am impressed with your goal. Being able to get out of your bed to sit in a chair. It's what I call First things first. Being able to sit in a soft, comfy chair and visit with your family. That would be awesome for them and for you. I'm praying for that one thing to happen soon. 💞

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited August 2019

    image

    Stephanie, yes, I remember Stefajoy. Hope you enjoy this photo I took on the Tagus river in Lisbon with a Golden Gate lookalike. I think you have many more sunsets to see as I'm hopeful the intrathecal chemo will work to ease your suffering and prolong your life. I'm praying it will be so.

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  • Gumdoctor
    Gumdoctor Member Posts: 675
    edited August 2019

    Sunset -

    image

    Like Grannax, I do not know you as well as many others. But I have seen your name many times in the BCO boards. My heart is breaking for you and rooting for you at the same time.

    This disease is so relentless... so final... as if it owns the Universe. It is taking over the universe for those of us here. I just have no words on that subject....

    You are such a role model for grace and calm and compassion. I am so grateful our paths could cross here.

    My best wishes to you as you navigate your near and far future.

    Gumdoctor

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited September 2019

    I’m thinking of you and your family constantly, my friend.

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  • Micmel
    Micmel Member Posts: 9,450
    edited September 2019

    Sunset~Doctors, just like they can't find a cure, cannot tell you if 2-4 months is what you have. I happily beg to differ. Ive known many people who have made it a lot longer!!!I also have my jewelry ear marked. When you said a mother's work is never done. I felt like I was holding your hand. I have always said that, since the day I knew what a mother even was. You truly are a beautiful sunset/person. Precious woman. You visit that family and hug on that special son. You're going to start to think about the holidays soon darling. I hope they are magical for you! You deserve only the best. ♥️

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  • Andi67
    Andi67 Member Posts: 423
    edited September 2019

    Sunset - I didn't realize we have kids that are the exact same age. Sending you and your family love, hugs, prayers and positive healing vibes. Hoping that chemo can kick that cancer to the curb and that you will soon be out of your hospital bed. I so agree - a mothers work is never done. :) Hang in there... we are all here for you! XO

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited September 2019

    Hi Sunset, here's hoping you are finally out of the bed and experiencing your hopefully, comfortable chair. Please don't let your mind go there, not yet. You are in a tough spot right now, but we all know that can change for the positive.

    There are others on BCO that are living with their Lepto.. so I am surprised they said that to you. Micmel is correct. You have ever chance to be on the good side of statistics. Just remember that!

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  • Iwrite
    Iwrite Member Posts: 870
    edited September 2019

    Hoping you've moved to your comfy chair for the weekend Abeautifulsunset! Thinking about you and praying for a turn around. Here's an August Lake Michigan sunset. Sending you many hugs.

    image

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited September 2019

    Update: ABeautifulSunset wants you all to know that she is at home with her family trying to enjoy her life. She has now chosen to pursue only palliative care, as she and her oncologist believe that she will do better this way. Getting the pain under control is challenging. She and her oncologist agree that chasing the cancer with difficult treatment will do more harm than good at this point, as she has mets in bones, liver, leptomeninges, and now lungs.

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited September 2019

    love to you, Sunset.

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  • Rosie24
    Rosie24 Member Posts: 1,046
    edited September 2019

    Sunset, thinking of you and wishing for your pain to disappear. 💕


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  • MJHJAN1014
    MJHJAN1014 Member Posts: 708
    edited September 2019

    Peace and comfort, dear Sunset

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited September 2019

    Shetland. Has she gotten to move to the comfy chair yet? 💞

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited September 2019

    Sunset, Enjoy this time with your family. I wish you comfort and joy during this difficult time. You remain in my thoughts.

    Hugs and prayers from, Lynne


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  • candy-678
    candy-678 Member Posts: 3,950
    edited September 2019

    Sunset- Gentle hugs from here. And prayers for comfort and peace.

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited September 2019

    Sunset..so I was sitting at an outdoor bar watching the sunset and a family walked by. The family consisted of a mom that was obviously not 100% and her grown children.

    They were spending an evening together as a family and I thought about you and your desire to be with your family.

    I want that, too when I am facing the decisions you are making now. Enjoy every moment with them. Maybe they will even get you to your favorite place..beach, porch, chair, bar...

    Love to you.


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  • Jsniffs
    Jsniffs Member Posts: 65
    edited September 2019

    Sunset - You have so many people here loving and supporting you. Lots of love and hugs. You are amazing.

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  • Nkb
    Nkb Member Posts: 1,436
    edited September 2019

    Hugs to you Sunset-

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  • Micmel
    Micmel Member Posts: 9,450
    edited September 2019

    Love you to beautiful woman. Enjoy your family and every moment. You’re so loved

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited September 2019

    I'm overwhelmed by your expressions of love and support. Thank you.

    Sunset

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  • JFL
    JFL Member Posts: 1,947
    edited September 2019

    Stephanie, I wish for you pain relief and much quality time with your family right now. You are are in my thoughts.

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