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

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Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,289
    edited July 2015

    Thanks, ladies for your kindness. Even if some are not happy with this, and I understand why, as long as we are not name calling and telling others to insert their mets into their bums,I'm good. Have a wonderful weekend. I'm babysitting for my granddaughter tonight and being with her always makes me happy.

    Caryn

  • intothewoods
    intothewoods Member Posts: 179
    edited July 2015

    Terre, I'm sure your typing skills help a little, but that's not the biggest factor. Winking

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

    (((Terre))) I just felt like a hug.

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

    Sending big hugs back (((((Dune))))). Happy

  • terrij152
    terrij152 Member Posts: 63
    edited July 2015

    So glad to come across this thread! I am still new to the stage 4 diagnosis and I'm still trying to figure out my "new normal"! Going monthly to the oncologist for Xgeva and Lupron injections. Femara seems to be working so far for my lung mets and finished rads to my right hip (acetabular dome).

    I'm going back to work in a week, but I'm dreading it! Work for me is a huge stressor, and I'm trying to find a new job.

    Your posts are so encouraging to me, I thank you all!!

    <3

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

    Hi Terrij! Sorry you're here, but glad you found us. It does take a while to find the new normal. Of course, I wasn't normal before dx! :)

    Welcome to the thread!

    Terre

  • GatorGal
    GatorGal Member Posts: 750
    edited July 2015

    a nice PM from Terri has me back on BCO after a couple of months hiatus. I've only visited two of my favorite threads ... When you are so far behind it takes a while to catch up with the reading! Surprise, surprise, Caryn is an active poster on both those threads. I do not envy Caron's NED status in the least. I am happy for anyone who is NED even though my last scan showed slight progression. I have always been a bit of a Pollyanna and choose threads that give me hope and encouragement. I also frequent a place to talk of death and dying because I want to be prepared when that time comes. I am free to block that thread or stay away from it whenever I choose. I honestly don't understand criticizing another for their posts ... Positive or negative. We can choose to block. We cannot choose what stage or grade "our" particular stage IV is.

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

    Hi Gatorgal! Great to see you back. I see on another thread that you're headed out on holiday soon - fingers crossed for you. And sorry to see you have progression. Sending you good thoughts and hugs.

  • GatorGal
    GatorGal Member Posts: 750
    edited July 2015

    good to be back, kiwi, though I have spent the last several hours reading to catch up. Will be gone again and have to catch up on my return! Thanks for the good thoughts and hugs! My onc has given me a short break from chemo so that I can enjoy the trip. Just need to kick this bronchitis to the curb by Friday! Have missed you all

  • surfdreams
    surfdreams Member Posts: 179
    edited July 2015

    We've missed you, GatorGal! Have fun on your next adventure!!!!


  • GatorGal
    GatorGal Member Posts: 750
    edited July 2015

    thanks, Surfdreams! I know I will enjoy my trip. So fortunate to have relatives who live in Norway guiding us around and making all the plans. I saw on another thread you are taking namenda. Will be interested to see if that helps. It was prescribed for my step-father for dementia but he wouldn't take it. He should have!

  • Andi67
    Andi67 Member Posts: 314
    edited July 2015

    Hi all,

    I have been lurking on this thread since my recent "vacation" from another not to be named thread.... so many of you from that thread are now here and I missed you....the recent debates have made me think (more than I usually do, which is at least three times a day) about life and Stage IV and how it affects all of us here, no matter where we are with it. I was going to post something insightful, but then read Kiwi Cat's long post and literally sat here crying.... what an amazing writer you are, and you summed everything up perfectly. BCO is a place that I want to come to be surrounded by others who identify with the thousands of emotions that come with a Stage IV diagnosis; a place where everyone understands that even if we are NED and "doing well" that our days are never, ever really completely carefree and never will be again.... or the days of the people around us that love us, even if they are in denial (like my husband) I hope this makes sense. Anyway, Kiwi - you said it all perfectly. It's that simple. Thank you.

    In the spirit of life not ending with a Stage IV diagnosis I am going to post a picture of a hike I did last week from Aspen to Crested Butte and back... 26 miles in all... up over a 13K peak. I also posted on the Fitness thread.... I'm with my "hiking group" and I am the one of the two in the purple poncho's... the one on the left (blonde hair). It was an amazing, very intense, exhilarating two day adventure that definitely reminded me that right now I am very much alive and that I should be grateful for every day. EVERYBODY should - Stage IV, Cancer or not.

    Caryn - is that a picture of your granddaughter beside your name? (what do you call those things?) She is darling.

    XO

    Andrea

    image

  • tina2
    tina2 Member Posts: 758
    edited July 2015

    Andrea, good points and great photo. That's a fun-looking bunch posing amid some darned impressive scenery!

    Tina

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,289
    edited July 2015

    Andrea,

    Wonderful post and great photo. That hike sounds like it was challenging, rewarding and beautiful all rolled up in one.

    I realize I am not stage IV enough for some folks (and how, exactly, does one go about inserting a bone met into ones bum? 😉), haven't suffered enough etc. but there's nothing I can do about that right now, though I'm sure I will. I neither understand vulgar, coarse posts nor the need to stratify/divide our stage IV experience. Each of us goes through this differently, but it is always there. A shadow, a looming cloud hanging over even the "healthiest" of us.

    Take care all.

    Caryn

    PS: Yes. that is my granddaughter, Frankie, in my avatar.

  • bestbird
    bestbird Member Posts: 232
    edited July 2015

    I've always looked upon this thread as offering hope and a degree of comfort for those facing mbc. Granted, some people suffer more acutely than others, and we all deeply wish that were not so. To those in distress we do our best to offer comfort, and to those who are NED and doing well, we offer congratulations and many more years of the same.

    Anyone who has been diagnosed with metastatic disease, irrespective of whether it's one met or too many to count, should have a safe haven here.

  • divinemrsm
    divinemrsm Member Posts: 6,614
    edited July 2015
    Andi, what a glorious photo. Mountains always send me. Love it. Nice post, too.
  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited July 2015

    Andrea! Welcome back! :) Love the photo - just fantastic on many levels - the people, the scenery, the joy of the accomplishment. You go girl! And thanks for the compliment on my writing. I just basically wrote what I feel.

    I feel rather pathetic and whiney because I know my problems are so small. Just met a guy on the elevator who had on a pink ribbon pin and I mentioned it. He said, "yes, I wear this to encourage discussion with people. My daughter died of MBC last year. She was 40 and leaves 3 small children behind." I told him how sorry I was for his loss. He got a bit choked up and said, "she was the bravest person I ever met". I again expressed my sorrow at his loss, and he shook his head, and said "I wear this so people will talk to me about it. It needs to be talked about - there needs to be a cure. It's an epidemic and women, especially young women, are dying from this disease." He also said, "I know about pinkwash, but I wear a pink ribbon because people know it means BC, and I can open up part 2 of the conversation about MBC." Incredibly touching. And good on him! 's how I'm maintaining her legacy."

    It was incredibly moving and touching, and made me a bit sad. But also made me smile at the same time because the word IS getting out - we need a cure. Now! No one - young, old, male, female - should have to die of this disease.

    Hugs,

    Terre

  • MusicLover
    MusicLover Member Posts: 777
    edited July 2015

    Kiwi, That is a sad story but it is wonderful that he is telling his daughter's story. And it is good that you gave him the opportunity to tell you about her,

  • intothewoods
    intothewoods Member Posts: 179
    edited July 2015

    Kiwi, thanks for sharing that! Incredibly moving and touching just reading about it.

  • annieoakley
    annieoakley Member Posts: 653
    edited July 2015

    Terre, what an incredible story and thanks for sharing. I got a little choked up reading it but it does make me happy to know the word is getting out about MBC

  • Nel
    Nel Member Posts: 597
    edited July 2015

    Kiwi - thankyou for sharing

    Like Caryn, I am NED and doing well, tho stage 4. I refer to stage 4 as a weighty companion. There is a continuum, but this companion is with us every day

  • NYCchutzpah
    NYCchutzpah Member Posts: 148
    edited July 2015

    Andi67 the little pic by someones name is called an avatar go to your profile and look to see where you can upload a pic that you want to use.

    Charlotte

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

    Well said, Nel!

  • GatorGal
    GatorGal Member Posts: 750
    edited July 2015

    Andrea, wow, beautiful picture and what an adventure! I'm going to go look at mountains but I won't be hiking! Too much shortness of breath with lung mets. I think it's wonderful that any of us can get out and exercise and push our selves to the limits! And communing with good friends is icing on the top! Congratulations on just doing it!!


  • rena_helene
    rena_helene Member Posts: 6
    edited July 2015

    Hi, all,

    I've been a lurker on the bco forums for about two years now and have always been hesitant to post my story or any of my questions or answers because, while I am Stage IV like all of you, I am a relatively healthy Stage IV, just like Caryn. I've been worried about backlash of the kind that it seems she's garnered over the last several pages of this post. But I clicked on this particular thread today because I am looking to find a way to LIVE with Stage IV, and not just plan to die with it. Okay, have I piqued your interest? My story…

    I was diagnosed with Stage II IDC on 7/29/13, so Wednesday was my 2nd "cancerversary". I had a double mastectomy with axillary dissection in August 2013, was slated to begin chemo and then my breast surgeon recommended CT and Bone Scans in September 2013. Well, on 10/2/13, the bomb dropped—I had a bone met in my rib and I was now Stage IV. I thought, "well, that's the end of that". The chemo was off the table and I was started on Tamoxifen and Lupron (44 y/o at dx, pre-menopausal) in November 2013. I hesitated for awhile to go ahead with RT, but smartened up in February 2014 and had 23 rounds of targeted therapy to the rib met. My next scan (and the next, and the next) showed that the lesion was getting more and more necrotic, and no new lesions were showing up. As of my scans this past Monday, I am still NED. Hooray, right?

    Well, while I tell everyone who asks after my health that I am doing very well and have no physical side effects (besides hot flashes and night sweats, for which I keep a few extra t-shirts by the bedside), I never mention the mental side effects. Yes, I am much "healthier" than the majority of ladies with MBC, and my heart aches with the stories I read about their trials and tribulations. However, I still have a cloud hanging over my head which is very dark and very heavy. I have scans every six months to tell me if I'm going to live another six, or if I'm going to go to an even darker and, probably, a painful place. I can no longer look more than six months ahead. I think, "why should I contribute to my 401k when I won't be around to use it?", and, "why should I bother working when I could be home with my 11 y/o daughter, or cooking for my family or planting a garden?" Well, having become accustomed to a two-income family for the past 15 years kind of answered that last question. But I feel as if I'm wasting my life at work instead of doing something meaningful. Yes, I am going on vacations which are planned for more than six months in the future (with proper trip insurance, now). I am going out to dinner more often. I am getting together with friends and doing silly things. But when can I ever start to look beyond that six-month mark? How do I remove that invisible barrier in my head that prevents me from having a positive, long-term outlook?

    I would hope that I could join this thread and have all my questions answered, or in lieu of that, at least work on some peace of mind so I can LIVE… I do not wish to be the subject of attacks by those that feel I'm not "sick" enough to post, so if that's the case, BLOCK ME NOW. I have no time in my life for negativity. (You should see how many people I've un-followed on Facebook…)

    So, ladies, if you will let me join you in your quest to live well and live long, I would be honored to join your ranks in this thread. I may lurk more often than not, and forget to check back for days/weeks at a time, but I will be back. I need you. My family needs you. Help me to learn to get on with my life.

    Most sincerely,

    Rena

  • Partyoffive
    Partyoffive Member Posts: 53
    edited July 2015

    carum,

    • I don't post a lot but I do follow the threads and this is one I look forward to reading. Reading these threads is a choice and not mandatory in any way if someone feels this topic is not their cup of tea-then just don't click on it. I have 5 children and have not been able to go on the mothers with school age children thread(that is my choice) i find that your take on this disease aligns with mine. I too I have had relatively few problems in the past two years. I was diagnosed at stage 4 with extensive bone Mets and started tamoxifen/xgeva. I have continued to live my life with very few problems. I am not Ned but have been stable with few side effects(I have hot flashes,bone pain ,muscle cramps .headaches and vision changes) I am choosing to see those side effects as the medicine working. That doesn't mean that I'm living in denial I'm living in my reality. When my status does change I hope I have the grace to continue living like I am now. I'm not jealous of anyone's Ned status it brings me hope that one day that could be me.
  • exbrnxgrl
    exbrnxgrl Member Posts: 5,289
    edited July 2015

    Hi Rena,

    Welcome and thanks for your honest post. I wish I had a good answer for you. I'm also on the six month plan and, basically, I just carry on because worrying changes nothing. It took me years to learn that and I think my personality pre-disposes me to that. I am in a different situation from some members in that my children are grown and married and I don't worry about them in the same way mothers of younger children do. I love them and my granddaughter deeply, but acknowledge that it's very different than still being in the child rearing phase of life. That being said, I generally carry on as if I don't have stage IV, simply because I can (and yes, I know others can't). I am not at all in denial (believe me, these thoughts color my life many times a day. It's always there), but I just figure that I'll make plans and just change/cancel them when things go south.

    Work... This is really individual. Because my work is very, very satisfying and important to me, I won't consider retirement until I have to. Again, I don't have young children that I could be spending time with (they work too!). That definitely changes the picture. I am single, so having that income stream is also very important to me. I know this is a hard call for you. I hope you and your family can find a way to meet everyone's needs

    Lastly, I hope with all of my heart, that the divisions that have sprung up between the less effected and more effected with stage IV, fade away. I can take differences of opinions or points of view, but not coarse language, bullying or vitriolic belittling. I will never stop speaking up against that. We may not all be in the same place in our disease, but for all but a tiny minority, the endpoint is the same.

    Please have no fear of posting here. There is also a thread on oligometastasis that you might find interesting.

    https://community.breastcancer.org/forum/8/topic/7...



    Take care,

    Caryn

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

    Well said, PartyofFive - well written and exactly what I feel.

    Hi Rena, Welcome to the thread. Glad you're not lurking anymore - loved your honest post. I don't have the answers either, but here's some things that have helped me (I've posted this before):

    • When you get swamped with fear, just stop, ask yourself "am I ok right now?" Chances are that you are ok right now. It helps stop the cycle.
    • Instead of saying, "but", say "and". Example: "I'd love to go to the beach, but I have cancer" versus "I'd love to go to the beach and I have cancer." When I was first told this, I thought "yeah, right". However, it did help - it's the concept of doing things AND having cancer at the same time - life and cancer can coexist and are not exclusive of one another.
    • Practicing mindfulness. Easier said than done.
    • Ask yourself: will worrying change the outcome. If I worry enough, will I stop having cancer? If I let this dark cloud rule my life, will it change the fact that I have cancer? Probably not. So why let something that serves no purpose rule your life? Same with fear.
    • I totally get the dark cloud. I feel it descending and imagine that I am a giraffe and stick my head up above the cloud - there's sunshine up there. Yeah, I know that's hokey, but it does help a bit.
    • Ask for a hug. Sometimes you just need a hug. Don't be afraid to ask.

    All that said, do I have fear, horrible emotional days, scanxiety, etc? Heck yes! And days when I'm not sure it's worth even going on even though I'm NED? Yup. But I do try to stop myself from spiraling into it and letting it control me. I acknowledge that I'm terrified, that this is a lonely disease, etc., and accept that these are part of the emotional picture that is me. Just like howling with laughter at a birthday party for a 2 year old last week made me howl with laughter when the birthday girl was striking poses and 'walking the runway' in the living room - totally working it for the camera. When I was laughing, the fear was still there, and I was able to laugh. We're chronically a mix of emotions - think about how you can be in a great mood, headed to lunch with the girls, and some inconsiderate doofus cuts you off in traffic and slams on his brakes. Now you're angry. But still looking forward to lunch with the girls. Feelings that coexist. It takes a lot of work to be in that space and sometimes I don't work at it hard enough.

    This is a great and safe place to vent, discuss your fears, etc. Sorry you have Stage IV and (not but) glad you joined in the conversation.

    Sending hugs,

    Terre

  • divinemrsm
    divinemrsm Member Posts: 6,614
    edited August 2015

    Omgosh, Kiwi. A couple things on your list are great suggestions I hadn't heard of before. First, tho I have heard of, and often do, swap out the word 'but' for 'and' , I hadn't thought of it in the context that you mention. Wow. That's a game changer.

    And asking for a hug. I just don't. I am so used to just soldiering on. But I am going to start doing that, too.

    One more really good point you make. Emotions, even ones that seem opposite of one another, can and do coexist in a person. I think it is healthy to acknowledge and embrace the feelings.

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

    Thanks Mrs. M. :) Another thing that I thought of that helps me. Before dx with Stage I, and then Stage IV, I was just trekking along with life. Like most people do. The difference between "us" (Stage IV) and "them" (no cancer) is that we have a greater sense of our mortality and we know what we may die of (note that I say "May" not "Will"). Other people just don't have that info. But we're all headed the same direction - I know how this ends and as they say, no one gets out of this alive. So, how would I live my life if I didn't know? And how much more can I get out of life knowing what I do know?

    Sending hugs,
    Terre

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