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Transitioning

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bestbird
bestbird Member Posts: 232

This is not an easy note to write, and I am very sorry that it may be a difficult one to read.

I've come to the realization that I can no longer contend with the effects of metastatic breast cancer combined with multiple GI issues that prevent me from eating and drinking. I am hoping that hospice will help ease my transition and also lighten the burden borne by my husband Steve, who has remained lovingly at my side.

I've been extraordinarily fortunate to have outlived my prognosis. In the extra time I was granted, I've published a book for patients and caregivers called "The Insider's Guide to Metastatic Breast Cancer" and founded the Patient-Centered Dosing Initiative which was pivotal in transforming the "more is better" concept of oncology drug dosing to one which is far more humane and better-tolerated for cancer patients.

Yet the most important part of my life was being loved, and loving in return. Not only by family and friends, but also by other patients who have joined me in the trenches of this disease.

I ask for your understanding in that I may not have the wherewithal to respond to individual replies.

I am grateful to have no regrets, and think of this phase as having tied up the colorful ribbons of my life into a beautiful bow.

Thank you for being part of my life, and for all you have done to enrich it.

Anne

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Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,947
    edited March 2023
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    Anne,

    I won't pretend that your post wasn't gut wrenching to read but as someone who has gone on for more than a decade at stage IV (though I've had it physically easier than most), I completely understand. Both my heart and head are with you and my hope is for as easy a time as possible for you. You have been a treasure to bco and I am grateful for all you've done.

    Caryn

  • threetree
    threetree Member Posts: 1,422
    edited March 2023
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    I only "discovered" you recently, when another person here told me about your book, and I bought it. I just have to say that I have been truly amazed and blown away by what you have been able to do and accomplish while stage 4. I can only dream that I could be as positive, productive, and helpful to others as you have been. This will sound so very trite, and I apologize for it, but I am just so, so very sorry to read your post here. You have been a brief but very wonderful addition to my life and I will never forget your contribution. I'm so glad I ordered the book, because now I have a tangible piece of your kindness and contributions to all of us. You are an inspiration whom I will always remember and admire. Thank you.

  • cure-ious
    cure-ious Member Posts: 2,754
    edited March 2023
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    Dear Anne, How beautifully said!!!! I am so grateful that you were here when I was first diagnosed, and for all the insights you added during the subsequent years. Hopefully you can still show us the "Best Way" forward, now in peace and relieved of the pesky (and sometimes terrifying) medical interventions. I thought this was a lovely definition of "transition"..

    image

  • alicebastable
    alicebastable Member Posts: 1,945
    edited March 2023
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    Bestbird/Anne, I am also intruding on this space to say thank you for your wisdom and kindness, and to wish you peace, for you and your loved ones.

  • elderberry
    elderberry Member Posts: 1,065
    edited March 2023
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    Bestbird/Anne: You have been a beacon light in the darkness of MBC. You did all the hard work in order to pass on knowledge. You touched so many of us. There are no words to express our gratitude. I wish you peace and comfort.

  • mojos
    mojos Member Posts: 33
    edited March 2023
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    Thank you for writing such a beautiful and loving post. You have given to this community beyond all measure. May these days be peaceful for you.

  • chico
    chico Member Posts: 194
    edited March 2023
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    Anne - you already know how grateful I am to you and how much I will miss you. Fly free Bestbird you will not be forgotten

  • jsniffs
    jsniffs Member Posts: 136
    edited March 2023
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    bestbird - Such difficult and yet oh so beautiful words. Even when you are challenged, you continue to inspire! You have made a difference to so many people, and your book has been super helpful. I review it every so often when I need to get back on track. Lots of love and hugs being sent to you. I wish we could all make such a wonderful and lasting mark on this world.

  • aprilgirl1
    aprilgirl1 Member Posts: 777
    edited March 2023
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    Anne, you have made such a difference in our community. I also have your book which gave me a guide and comfort in the early days (daze) of stage IV diagnosis. Your continued advocacy for all of us has been nothing short of amazing. So much love and prayers sent to you and your husband as you transition. You will never be forgotten and I hope you can feel all of us surround you with love.

  • eleanora
    eleanora Member Posts: 299
    edited March 2023
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    Dear Anne

    Your kindness and generosity in sharing your knowledge helped me in addition to many other MBC patients, whether they have posted here or not. Thank you. Wishing you comfort and peace in this stage of your journey.

    Eleanora

  • nkb
    nkb Member Posts: 1,561
    edited March 2023
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    Bestbird- I wish you serenity and comfort in your transition. Hospice can be so wonderful. As the others have said you have helped all of us so much. I am saddened, glad you have compassionate help.

  • jo-jo2018
    jo-jo2018 Member Posts: 139
    edited March 2023
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    Bestbird, you are in my thoughts dear lady. May your transition be peaceful and filled with your loved ones surrounding you. Thank you for all your knowledge you passed onto your MBC sisters. YOU, made an impact on us all.

  • seeq
    seeq Member Posts: 1,109
    edited March 2023
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    Bestbird, You have done so much for us all. The book is so easy to read and explore and has been very helpful. The Patient Centered Dosing Initiative is a gift that will continue to impact people's lives indefinitely. I wish for simplicity and peace and strength for you and your loved ones.

  • goldensrbest
    goldensrbest Member Posts: 669
    edited March 2023
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    Bestbird - you have touched so many lives and WILL continueto do so. May peace and comfort be yours on this journey.

  • believe60
    believe60 Member Posts: 86
    edited March 2023
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    Bestbird, I am relatively new to this journey none of ever wanted to be on (about 6 mos), but I can see you have made such a positive difference for the MBC world. I downloaded your book, and found information about an interaction between ibrance and another med I take. It’s a rather big deal interaction that I never knew or askedabout. So you have made a huge difference for me already. I will be talking to my doctors about this. I wish you love and peacefulness on this part of your journey.
    Nancy

  • mara51506
    mara51506 Member Posts: 6,192
    edited March 2023
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    I downloaded her book as well and found her to be so helpful and thorough in her research. I am sorry to have lost another person but blessed to have known her and her extraordinary help she gave us all. My condolences to her family and friends, here but also in real life as well. She is at peace now.


  • exbrnxgrl
    exbrnxgrl Member Posts: 4,947
    edited March 2023
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    mara,

    Has she already passed away?

  • bestbird
    bestbird Member Posts: 232
    edited March 2023
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    I'm still here, and so very grateful for the loving messages which I read and re-read each day.

    With heartfelt appreciation...

    Anne

  • jobur
    jobur Member Posts: 493
    edited March 2023
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    Anne~ I really did not want to click on this thread, as I was pretty sure what it would contain. While I am very saddened to hear that you have entered hospice, it is comforting to read your post and feel that you are grateful for the time you have used so well and at peace as you transition to whatever is next. I as an individual, and we as a community, can never thank you enough for all you have done for us. Your work and accomplishments will continue to benefit so many even after you have passed. I hope this knowledge brings you an extra sense of fulfillment and comfort as you look back on your life.

    Wishing both you and your wonderful husband comfort and peace. Know that you are much loved, even by many whose names you do not know. I am thankful to be one of them.

    Jo

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,947
    edited March 2023
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    Anne,

    I’m so sorry I had to ask that question but mara’s post… well, never mind. You are well loved, cherished and appreciated. I hope you are comfortable and enjoying your loved ones.

  • cookie54
    cookie54 Member Posts: 717
    edited March 2023
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    Anne, Thank you for all of your knowledge that you have shared with all of us. You are an inspiration to all and truly a gift to the world. Take comfort in knowing how many lives you have touched along the way. Wishing you love and peace.

    Andrea


  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited March 2023
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    Anne,

    It has taken me a little time to process this as you have been such a constant, positive force on BCO for as long as I have been a member. You were one of my first contacts on the lung mets thread as you helped me to navigate my pleural infusion and PleurX catheter. As others have said, you have touched us individually and collectively in a myriad of ways. I thank you on behalf of myself and the many others who will benefit from your amazing work going forward.

    Wishing both you and your husband peace and comfort in this transition. My thoughts and prayers are with you.

    Pat

  • hopeful82014
    hopeful82014 Member Posts: 887
    edited April 2023
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    Dear Anne - I, too, apologize for intruding in the Stage IV space but wanted to add my voice to those holding you in our thoughts at this time. Thank you for sharing who you are and for your kindness to so many in this community. I will really miss knowing that you are around here, Anne, and will remember you gratefully. I hope you and Steve will be wrapped in peance and comfort in the time ahead.

    Julia

  • serendipity09
    serendipity09 Member Posts: 769
    edited April 2023
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    Dearest Anne,

    I also apologize for invading this thread. I just wanted to reach out and let you know that you are in my thoughts and prayers (hope that is ok). We may not have interacted, but it's obvious by all the previous posts, that you touched and helped the lives of so many others. I wish you peace and comfort during this transition. <3<3

  • meja
    meja Member Posts: 84
    edited April 2023
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    Dear Anne,

    Thank you for all you have done and will continue to do for the mbc community. You are a wonderful and kind person; when I was diagnosed back in 2018 I read about your book and quickly requested a copy. It was not only extremely helpful with all the information, but it also made me aware of how important self-advocacy is when living with an mbc diagnosis. I have also followed your patient-centered dosing initiative and provided input to your survey. The longer we live with this diagnosis the more important initiatives like this become.

    It has been great and comforting to see your posts here and in other communities.

    I wish you a loving and peaceful time with your loved ones.

    Know that your knowledge and helpfulness touches so many lives all around the world.

    Love from Denmark,

    Meja


  • smallmoments
    smallmoments Member Posts: 32
    edited April 2023
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    Dear Anne ~ I am sending you and your husband comforting thoughts. May this be a time of ease and tranquility. I join others in expressing thanks for your dedication, kindness, and generosity. Your book and work on the dosing initiative will continue to serve as a guiding light to so many in the years to come. Thank you and sending you love from New York.

  • irishlove
    irishlove Member Posts: 510
    edited April 2023
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    Dear Anne,

    I was recently diagnosed with MBC (March 10,2023). Initially I had thought only about allowing nature to take it's course due to years of MS struggles and an error filled CT scan from the hospital at admission. And then I found you.

    Thank you for your years of giving to this community and for inspiring others to challenge statistics and the medical community. Your inspiration will be a part of your legacy for those that come here searching for hope and guidance.

    Bless you and your family and know you touched many lives.

    Irishlove - Laurel

  • latte123
    latte123 Member Posts: 31
    edited April 2023
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    Dear Anne,

    You have made a profound difference in the lives of breast cancer patients that will continue far into the future. Your book is an essential resource and has always been freely available to everyone. I can only imagine the amount of time it took to create the book and then constantly update it. Furthermore, your work on the patient centered dosing Initiative is the most helpful thing in cancer care beyond the cure. As we know as cancer patients, it's the treatments that make it all so difficult so much of the time. A new approach to dosing could be transformational in the experience of getting cancer care. Thank you! From the bottom of my heart, I wish you to fully embrace how all of your kindnesses have rippled across the world. You are remarkable! Thank you for making a difference in my life and all of our lives. I am wishing you and your family, many gentle and peaceful moments.

    Cindy

  • moderators
    moderators Posts: 8,178
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    Anne, please know you remain in our thoughts. Sending you love!

  • cowgirl13
    cowgirl13 Member Posts: 778
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    You are in my thoughts