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Life does not end with a stage IV diagnosis (really!)

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Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,316
    edited August 2015
    Susan,
    So very good to hear from you and wonderful news about how your tx is going. I agree that those who are doing well don't need to be made to feel that they should be quiet. Sadly, there are a few who think one can't or shouldn't express certain things with stage IV and have told some of us, in rather vulgar terms, exactly how they feel. I think it's best to report such things to the mods, block those folks and simply carry on. I go back and forth between stepping away from bco, because I would never put up with people like this in real life ( I actually don't know people who speak to others so crudely) and wanting to stick around to provide hope and another side of stage IV reality, especially for newbies. Anyway, I'll hop off the soapbox but again, I am thrilled to hear from you.
    Caryn
  • susaninsf
    susaninsf Member Posts: 1,099
    edited August 2015

    Thanks Terre and Caryn! Only one tumor in my lung is showing up in contrast and the SUV is only 1.5. Apparently, "normal" is anything 2.0 or lower. That tumor used to be 4cm and now it's only 2.7x1cm. Eye tumor gone, retina reattached. Femur tumor gone. Brain tumors gone or dead. Breast tumor still there but doesn't show up in contrast. Tumor markers have been in normal range for the last 5 months. Feeling healthy and energetic. Not too many others here have had such widespread metastasis from first diagnosis but there is hope even for those as far gone as I.

    Hugs, Susan

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited August 2015

    That is amazing and fantastic!

  • Nel
    Nel Member Posts: 597
    edited August 2015

    Susan - Wahoo Congratulations and a long time doing well

  • Xavo
    Xavo Member Posts: 244
    edited August 2015

    Susan, thank you for your wonderful post. Awesome! Great news for all of us, particularly for the newbies such as me!

  • AliceS
    AliceS Member Posts: 74
    edited August 2015

    Fabulous and gives us all hope down the line for whatever we face. Celebrate--do something special that you truly enjoy!!!!

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited August 2015

    I almost want to start a give a little page to buy a case of champagne for Susan! :) Like really good stuff!

  • susaninsf
    susaninsf Member Posts: 1,099
    edited August 2015

    Thanks everyone for your kind words!!! Really warms my heart! Smile

    Thankfully, I get to do stuff I love every day.

    Hugs, Susan

  • nbnotes
    nbnotes Member Posts: 338
    edited August 2015

    Susan - that is wonderful, and definitely helpful for me and others to read!

  • Barb312
    Barb312 Member Posts: 64
    edited August 2015

    Love this site. So uplifting. Even though I am old, I still love life. I still color my hair blonde and play golf with many bone mets . It will be 4 years soon. My radiation oncologist said 5 years. WRONG

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited August 2015

    Congrats, Barb! I still colour my hair blonde. My original radiation oncologist said I wouldn't see 60. My new one thinks I'll see 70. :)

  • AliceS
    AliceS Member Posts: 74
    edited August 2015

    To Barb and CatMom---I admire your spirit and optimism!! AND you CAN go on indefinitely. There are new drugs coming out all the time--my Oncologist says mets are being treated now as a chronic illness and you can survive for a long long time!

    Best wishes and let us hear more good news from you periodically! Makes us all feel better!

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited August 2015

    Thanks, Alice! My MO thinks mets will be a chronic condition like diabetes within the next couple of years. Let's get a cure NOW for those who aren't NED and so those who aren't Stage IV never have to be.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,316
    edited August 2015

    👏👏 I second that

  • Andi67
    Andi67 Member Posts: 314
    edited August 2015

    Susan - Welcome back and congratulations! I don't think we'd heard from you in a long, long time.... you were busy completely healing yourself! Truly amazing and a perfect story for this thread.

    Rena - I read your story several days ago and have been thinking about you ever since. I am only three years out from my diagnosis. I didn't go back to work (after a month of radiation and 8 weeks of chemo...I could barely move) and have spent the last 2 1/2 years at home with my kids.... my attitude was much like yours... I didn't want to be in an office if I only had six months left. I did plant a garden (two big ones), volunteered at the kids schools, took great vacations, spent a lot more time with my friends, etc. Like you, I have scans every six months and I'd be waiting for the bomb to drop. But scan after scan, they came back clear.... along with the one I got back yesterday. (yay, and whew, for another six months...) I was standing in the kitchen in my pajamas last week making pancakes for my teenage sons and all of their friends (they were there with me).... and I thought about how lucky I was to have had these last few years off and to have moments like those. However, like you we were in a two income family.... so a few weeks ago I finally made the decision to look FARTHER ahead and actually return to work fulltime... in an office... getting dressed up like a grown up. I signed a ONE YEAR contract. I'm not sure where I am going with this... maybe just to sympathize with you and encourage at the same time. I will probably always do things sooner than later at this point (buy that car, take that vacation, do that adventure with my friends, let my son get a Newfoundland dog, etc...)... it's just programmed into me.... "why wait?" has become my new motto.... but I am not so sure there is really anything wrong with that.

    Hi and hugs to everyone else!

    XO

    Andrea


  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited August 2015

    Well said, Andrea! Why wait? None of us is guaranteed a tomorrow, whether we're diagnosed with Stage IV or have good health. And I am very jealous - you have a Nuffie? I love them! Huge snuggle dogs! :) Wishing you all the best at going back to work; I'm sure it will be a bit of a shock, but that would be true regardless of your health situation. And congratulations on another good scan! Whoo Hoo! You go girl!!

  • dunesleeper
    dunesleeper Member Posts: 1,305
    edited August 2015

    I cut and paste your NED stories to share with my mother. I hope you don't mind. The main thing is that I get the message.

    However, I am NOT taking that dexamethasone anymore. I don't sleep right. I've gained 5 pounds. All I want to do is eat eat eat -- and to tell you the truth I don't really know what to do with myself when I'm awake. It's not like it is my house and I can get up and clean and rearrange furniture (which I did once upon a time. No, I just hide in this bed (haven given myself a 2 year (must be down to 1.5) year plan by now.))

    If I have some time left, I'm going to have to put my foot down and prepare the foods I want to eat -- and if it takes up too much room in her refrigerator, then maybe it's time she moved the hell over. At least if I had my food I would have healthy choices of what to eat when I need to nibble.

    Very encouraging.

  • artistatheart
    artistatheart Member Posts: 1,437
    edited August 2015

    Hahaha! I think all the time about how we need a like button with so many uplifting comments! LIKE!

  • AliceS
    AliceS Member Posts: 74
    edited August 2015

    I agree thinking we could use a "like" button. I check in often since this is on my mind daily since I was diagnosed. Feel we're together on this journey that we hope turns out well for us.

  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,107
    edited August 2015

    We definitely need a like button for all of the encouraging stories we read here

  • josalive
    josalive Member Posts: 53
    edited August 2015

    Andrea - thank you for that post! I was newly diagnosed in February and have made it through chemo and surgery and am starting radiation next week. Before cancer I was a complete workaholic and much of my life was focused on climbing that career ladder. After my fourth round of chemo I just had to let go and take some time off work. I was supposed to return on August 1st and made a last minute decision not to go back. Now I am without a job and haven't felt better. I just really need some time to focus on my life without the stresses of work. I can only imagine how many memories I'm going to build as I spend my days raising my 3 young kids. So many of my friends and family can't believe I've given my job up and are sure I'll be back at it in no time... But I think cancer has really changed my outlook on life and my priorities. I LOVE your 'why wait?' Motto. I have a lot of living to do and like all of us am not sure how much time I have. So out with the old and in with the new. And if I have results like you I might consider getting back to my career as well in a few years. Good luck!!!

  • NYCchutzpah
    NYCchutzpah Member Posts: 148
    edited August 2015

    Josalive contact social security and see if you can get on disability;

  • diana50
    diana50 Member Posts: 253
    edited August 2015

    Yep

    image

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited August 2015

    I like that, Diana.

    Lynne

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,316
    edited August 2015
    Diana,
    Thank you. Not a thing wrong with feeling that way 😀 .
  • steelrose
    steelrose Member Posts: 318
    edited August 2015

    Yep, Diana! COURAGE:)

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited August 2015

    Great post!

  • Xavo
    Xavo Member Posts: 244
    edited August 2015

    Terre, really like your onc and really like the view that in a couple of years MBC will be managed like diabetes.

  • gaia0132
    gaia0132 Member Posts: 308
    edited August 2015

    I just found this thread

    I'm newly dx had mastectomy in June and was staged IIIA but my base line scan just this week revealed multiple bone mets

    So here I am

    I am on way to MO to discuss my plan.

    Yesterday I worked with a client ( I'm a yoga teacher and holistic health practitioner) laughed a ton with him and high fives to the affirmation that I was able to get there to teach him. Later I ran into a friend on the street and we sat for an impromptu glass of wine.

    Talked with two amazing BC ladies, ate a yummy summer dinner with my boyfriend from our CSA share and generally decided that I am gonna be around for awhile

    Some of being able to have those moments yesterday are fueled by this bco site and all of the stories of how well people are doing in the face of a devastating condition.

    Many of us have and are going to have dark days. I know that and I'm sure I won't be excluded as I've already had several on my journey. So it pains my heart that people would begrudge anyone sharing what is beautiful in their existence

    Life is messy. Living and being human is a messy business with or without chronic illness

    I just pray to be gracious and grateful for everything I have and for all of the stories here. The good the bad the ugly and the beautiful.


  • divinemrsm
    divinemrsm Member Posts: 6,621
    edited August 2015

    "sharing what is beautiful in their existence"

    What a wonderful way to say it.

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