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

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Comments

  • Nel
    Nel Member Posts: 597
    edited July 2015


    Karz - beautiful photo !   I do see the gin and tonic, glad you enjoyed

    Be well

    Nel

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,316
    edited July 2015
    Lately, I've been wearing a bracelet with a lemon slice charm on it. I really like it as it represents, very clearly, how I've forged my path through life. The first thing that leaps to mind is making lemonade from lemons. Life hands us all lemons at times. No one lives unscathed. Some seem to be given more lemons than others. Being a lemonade maker is part of my nature, so the charm reminds me of that. Lemons also have zest and despite ups and downs, I have been able to maintain my zest for life. Yup, I really love this charm.


    In the context of MBC, some people find it odd that I have maintained my zesty, optimistic, irreverent stance. Is it inappropriate or insensitive to be this way? Do I fall outside of the acceptable behavior parameters for someone with MBC? Should I tone it down, dim my light? I was this way before MBC, should I now become something I'm not so as to fit other people's perception of how a person with a terminal disease should act? My answer, of course, is no. This is me and I have never been false to who I am. Yes, I am thankful that MBC has had a minimal impact on my life. I know that I'm a minority in that respect, but I have no control over the flavor of my MBC.


    MBC is cruel and unfair and knowing you have it is mind boggling. I may not have debilitating se's or face some of the hardships that many on bco face, but I still have MBC and I'm still filled with a zest for life even though I've been given a great, big lemon. Surely there's a place for people like me in the world of MBC.
  • nbnotes
    nbnotes Member Posts: 338
    edited July 2015

    Caryn - I love the symbolism of your lemon charm, and the attitude that you have is one I also try to emulate. I favorite this thread, and it helps to remind me along with the "what are you doing for fun" thread that I still want to be living my life as much as I can in whatever way I can along the way.

  • Karz72
    Karz72 Member Posts: 102
    edited July 2015

    I'm with you Caryn!

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

    I can always use a tall glass of lemonade!

    Karz I am so impressed by what you were able to do and so glad you did it. It's a beautiful picture and a beautiful weekend.

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

    For the lemonade makers (and drinkers) who find, or want to find, the zest in life


    image

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

    It is a lovely piece of jewelry, and I love the symbolism of your lemon slice bracelet, exbrnxgrl.

    In defining how a woman with stage iv bc 'should' conduct her life, well, all of us here, we are it. We are showing others how it's done. To my way of thinking, unless one has walked in my shoes, they cannot dictate how I live or react to this. I'm not sure if there is any other large group (350+) of stage iv women like this who come together to collectively share daily experiences in dealing with stage iv bc. If there is, I think we would find similarities in our approach. I think that here, our ideas and situations ping off of each other to shape and influence each of us in a way that help us cope on a daily basis. We are all over the map in terms of age, race, nationality, marital status, economic status, ect. as well as experiencing the gamut of emotions. I think it's all acceptable.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,316
    edited July 2015
    Divine,
    I couldn't agree more! We run the gamut, indeed, in all aspects of our lives and, as long as we are civil, it's all good. I would no more expect everyone to agree with me all the time, feel what I feel etc, do as I do, any more than I would expect everyone to like the same flavor of ice cream.
  • exbrnxgrl
    exbrnxgrl Member Posts: 5,316
    edited July 2015

    I shout it loud,

    My voice is strong.

    Life with MBC is dear.

    Fraught with peril, fear or normal.

    We live within the wide borders of it's map.

    The pain and suffering of the many is never diminished by the happiness, and luck, of the few.

    But all voices must be heard, hope for better QOL should be our aim and a cure our common dream. One does not take away from the other nor negate it's existence.

    So my friends, we mourn and we celebrate. Let's lift each other up, no matter where we wonder on this crazy path.

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

    Yep. What TheDivineMrsM said. I can't say it better.

    Caryn, what a refreshing glass of lemonade that was.

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

    As one of the newbies, I have to thank you for this thread. So far I feel great, and I hope to continue to feel this way. I am keeping a positive attitude, and you guys are just what I need. I will not let this unwelcome visiter in my body take over my entire life. I am 65 years old, but I still have dreams and goals and lots of living to do. I will continue to live my life my way as long as I can!

  • Karz72
    Karz72 Member Posts: 102
    edited July 2015

    thanks Dune. I'm feeling good & praying it stays this way for a long time, but appreciating every opportunity I get knowing there is a sword hanging over my head.

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

    "Happiness runs in a circular motion..."

    And so too do some debates. At the risk of repeating myself for the umpteenth time, I really want everyone to understand that while I have stage IV bc and am doing very well, I know that I am in the minority. I also feel deeply for those who have endured pain and suffering due to bc and all the crap that goes along with it. However, I fail to understand how publicly speaking up about how I have experienced MBC diminishes or takes attention away from the majority who are having a far different experience. Unless someone gives me a nationally syndicated TV show, it's unlikely that my voice will be heard by many nor influence anyone into thinking that MBC is a cakewalk.

    I'd also like to address the misconception people have of my "perfect" life. No one has a perfect life. I have gone through all of the trials, tribulations and a few horrors that touch many of our lives. When I was in my early 20's (almost 59 now) I decided to deal with life's adversities this way. Is it in my power to change? Ok, figure out how to effect that change and go for it. Is it outside of my power to change? If so, figure how to cope with it so it damages me as little as possible (most of this involves a lot of letting go).

    It has not always been easy to live by this, but I keep trying my best, because that's all I can do. For those of you who'd like a list of the "bad" things that have happened in my life, pm me. The past only interests me in sofar as what I have learned from it.

    I am not teaching or preaching here. This is just me! Take it, leave it, tear it down. I write as a way to keep my head on straight not yours 😊 Yes,I am a teacher so come see me if you're having trouble with readin', writin', or 'rithmatic.

    Lastly, please go ahead and block me if you find me offensive, I don't mind and I've never expected everyone to like me (just didn't think I'd be this polarizing). I firmly believe there's a place for me and others like myself on the stage IV forum. We are a legit part of the stage IV experience and our existence takes nothing away from the majority.

    Love to all, Caryn

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

    Caryn,

    You do belong on the stage IV forum just as we all do. We all share the scary diagnosis, and although our daily experiences and reactions to treatments differ, we have the weight of stage IV on our shoulders every day. I for one am happy that you are doing well, and I hope that I will have the same experience. Hope is a huge factor in my frame of mind, and you are helping to keep my hope alive. My understanding is that the stage IV form is open to all of us to share our questions and our good and bad experiences. I have joined this site to find support during the biggest challenge of my life, and I hope that I will eventually be able to provide support to someone else. I look forward to hearing from you often.

    God bless you. Stay well.

    Lynne

  • Nel
    Nel Member Posts: 597
    edited July 2015

    Caryn,

    I am not sure what might have happened or what someone might have said. Stage 4 is stage 4 is stage 4. .

    I am almost 2 years out with stage 4, feel well, work, raise my children and remain consistently irreverent. I do not have the words to describe how fortunate I am and am grateful every day. I am well today and but I know it could turn tomorrow, not a day goes by that I don't remember that as well. There are so many not so fortunate and my thoughts and prayers are with them.

    Why do some of us respond so well and others do not. Researchers are beginning to look at this question so hopefully there are many more who are able to live with stage 4, with minimal se's or are cured. We need to demand more funds for MBC research. In the interim, we need to support each other, recognize our differences and live our best lives.

    Be well

    Nel

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

    Hi nel,

    Just a little dust up that will blow over. We all can't agree all of the time, and I never expected that we would (Does anybody?). Yes, we do need more funds for MBC research and doing well with MBC should be no bar to that!

    Lynne,

    I've been here a long time, at least in MBC years. Stuff flares every now and then and then settles down. I am somewhat discouraged by the idea that being well with MBC takes the spotlight off of the majority who are not well. I personally, don't think it does, as they are, sadly, the majority. I never cared much for spotlights anyway. I'm just living life as well as I can and I too have MBC. Thanks for your kind post.

    Caryn

  • suems
    suems Member Posts: 79
    edited July 2015

    Caryn, thank you from the bottom of my heart for starting this thread! I have just spent the entire day reading this thread from the beginning, and can now start to see a glimmer of hope in my future.

    I was diagnosed Stage 4 off the bat in January, the verdict delivered in a very blunt and brutal way. I was already seriously depressed when this happened, and the pit I was living in became a bottomless chasm. Now, 6 months on, I am still not back at work despite having no physical symptoms (no pain, no chemo, just Tamoxifen), and have just started seeing a psychologist. I couldn't really see the point of carrying on like this.

    Reading your story, and those of all the other lovely women on this thread has finally allowed me to consider the fact that I am not going to die in the next few weeks. My sister died 3 months after her metastatic diagnosis, so I assumed I would do the same. Last week my shrink set me some "homework" to think up what I wanted to do for the next 5 years (the target my oncologist set) and I haven't been able to think of a single thing until today. I couldn't imagine trying to get a new job (I had to quit when I had surgery) - who would hire someone who won't be around for long? And long-range planning for holidays, renovations etc was completely pointless.

    Today I feel like I have been given a very well-needed "kick in the pants" and now HAVE to start thinking what I plan to do with whatever time I have left. Sitting at home feeling sorry for myself must end.

    I have 2 sons. The younger (age 21) left home last November and is going a computer course 400Km away, and now the older one (23) starts army training in 3 weeks (300Km in the opposite direction). So, after 3rd of August, my husband and I will be empty-nesters. I would now like to think of this as an opportunity for a fresh start. All of your discussions on cruises and holidays have got me thinking - our last real holiday (I don't count weekends with the relatives) was in 2004, so its about time!

    One thing I have always wanted to do is a road trip around the South Island of New Zealand. We can hire a small camper van and go down one coast and up the other. It will have to wait until spring, though - most of the South Island is covered in snow at the moment, with roads closed all over the place. (Don't forget the Southern hemisphere has the seasons the other way around from the US). A cruise is out, as I tend to get seasick even watching boats from the shore! If I won Lotto, I would go on a world trip (flying), but that ain't gonna happen!

    So thank you all so very much - this thread may have quite literally saved my life (or given me back the one that I had). I have a lot to think about now, and so much to plan for.

    Sue from New Zealand

    PS. If anyone is on a holiday cruise to NZ and calls in to Taranaki / New Plymouth, let me know and I can show you around!

  • divinemrsm
    divinemrsm Member Posts: 6,621
    edited July 2015
    sue, planning that spring trip is just the thing for you to do. Also consider taking a short weekend or day trip or going to a concert, or someplace special, or doing an activity you never tried before like horseback riding or parasailing (my son and I took a Segway tour which I loved, dh and I toured a former state penitentiary, ect.) sometime in the nearer future. It helps your mind to focus on new things.
  • capinva
    capinva Member Posts: 53
    edited July 2015

    Caryn, Thank you for starting this thread. I was initially diagnosed stage IIIb and everything was great for 4 years then it came back. Now stage iv and when I was given the diagnosis it was very difficult. Thanks to you and the other ladies here I know there is a new normal life ahead and praying that it will last for many, many years. I'm praying that a cure will be found soon so that all of us can live to be very old. God bless all of you.

  • txmom
    txmom Member Posts: 221
    edited July 2015

    Caryn, yes, thanks so much for starting this thread. I have read it from beginning to end. As a newbie, dx May 1st, stage iv at the get go ( turns out I didn't pull my hip flexor :/ met to iliac bone), I was really looking for hope. I was so scared. I didn't know anything about breast cancer. Nothing. I have a 16 year old daughter and 12 year old twins. My goal is to see them all graduate and off to college. I'm not so scared anymore. There is a place for everyone.

    Sue, I read Radical Remission by Kelly Turner. It's a really easy, good read full of hope when you need some. There is also a website where people submit their cancer story. When I feel down I read them and feel better. It helps me to stay positive.

    Caryn, OMG common core math has made me an idiot!

    XO Dana

  • Xavo
    Xavo Member Posts: 244
    edited July 2015

    Caryn, like your poem, good sounding. How about

    I shout it loud,

    My voice is strong.

    Even with MBC each Life is dear!



  • intothewoods
    intothewoods Member Posts: 179
    edited July 2015

    Caryn,

    Your expression of how you deal with life's adversities are completely in line with the quote I have in my signature. The space between stimulus and response is where we come to terms with what is within our control and what is outside our control and that we have full control over how we respond either way. When I remember this teaching of Viktor Frankel (he was a concentration camp survivor) and apply it I have found growth and sense of peace.

    Even for those of us who have had less physical SE to deal with, the emotional and mental toll can be quite significant and affect QOL in less obvious ways. And just to say again, this post was what gave me initial hope as it has for many many others new to Stage IV and made me think about how I want to live my life. I still enjoy following the thread even though this year has not been as "easy" as the first.

    We will keep on with this thread. Stuff will always flare now and then. Totally out of our control.

    Dana,

    I remember my parents saying the same thing about the "New Math" (whatever that was) back in the 1960's when I was in elementary school in California. Everyone was up in arms about it. :-)

    Be well,

    Lisa


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

    Suems,

    Yes, do plan a trip. To the best of my ability, I keep planning for the future as usual, simply because I can right now. I don't let the "what ifs.." intrude. When the day comes that I can't do this, then I won't, but that time is not now. Many have heard this before, but shortly after my stage IV dx, I had an amazing opportunity to go to NZ and AUS. I hesitated, briefly, and then made sure I bought travel insurance that covered pre-existing medical conditions. Needless to say, I took the trip and it was fabulous. I LOVE both NZ and AUS.

    Lisa,

    Thanks for a great post. Yes, the mental and emotional stress of MBC should never be discounted, even in the absence of physical distress

    I quite like common core math for the lower grades. My district has yet to decide on a new program/textbook adoption. I will be piloting both EngageNY and Go Math! I know many high school teachers are not happy with common core math, but for the little ones, it really helps develop an understanding of mathematical concepts that goes beyond memorizing math facts. Just my opinion, of course 😊

    Dana,

    What grades are your children/child in?

    Divine,

    Right on, as usual!

  • intothewoods
    intothewoods Member Posts: 179
    edited July 2015

    Caryn, my district adopted EngageNY for K-5 and Go Math for 6-8 this past year. Some of the teachers at my site piloted Engage the previous year. It certainly took some getting used to but for the most part, teachers have grown to love it. I like Common Core. I see kids at all grades engaged, thinking and talking about math in ways they never have before and enjoying it. Middle grades and HS have the most difficult challenge because the kids haven't had any experience with the common core shifts.


  • txmom
    txmom Member Posts: 221
    edited July 2015

    Caryn,

    The twins (daughters) are going into 6th grade. They had a "gap year" this year so they were missing some skills. It was tough and they worked hard for their grades. I have a daughter who is going to be a Jr. and just completed Pre-AP Algebra II. I have her help her sisters. Sometimes I pay her so it's win-win for us all. Have a great night and I'm praying for all of us!

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

    Hi all,

    I go to Auckland on business for three days and the threads all go crazy! I'm thrilled Caryn started this thread.

    Welcome to all the new people who've joined the thread!

    Several of us have gotten some "constructive feedback" via private message about not being welcome. Mrs. M - you are divine and said it well. And Stage IV is Stage IV is Stage IV. I'd like to think that those of us who are doing our best to lead "normal" lives and who are stable are considered good news rather than being seen as something negative. I do remember when AIDS was first happening. There were a few people who survived and some of them (including a friend of mine) were key in finding the medications that have made it basically a manageable chronic disease. So I do hope that maybe there will be learning from those of us who do respond well to treatment and stay stable.

    Suems - Heck, I'm just down the coast from you - I live at Te Horo Beach, in Kapiti. Holler if you get over to this part of the world. I have some friends in NP and get over there once in a while to visit. I won't bore everyone with the whole story again, but when I was dx in Wellington, the doc said I'd be lucky to make 3 years and told me to contact hospice to start planning ahead. Rather brutal. NZ doctors don't seem good at "warm fuzzy". I switched oncologists and my new MO thinks I'll easily make 10 years. It's been interesting - learning how to prepare to die, then learning how to live while "dying", then learning how to plan on being alive for longer. It's an emotional roller coaster but it does get better with time.

    Intothewoods - I am so sorry you're having a rough year. Ditto Dune. NBNotes - you've had a tough haul too. Nel is so right - we need a cure NOW.

    At the end of the day, despite any differences, I think the one thing we have in common is hope. The support I've gotten here has allowed me to hang on to hope during some dark emotional times, so thank you all for being here!

    Hugs to all,

    Terre

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,316
    edited July 2015
    Terre,
    Thank you, my friend. Your thoughts on this issue equal mine. There are no "sides" here, no pissing contests over who is more stage IV, nor anything to be gained by making some people more welcome than others. We are not enemies, though we have a common enemy; breast cancer. So, whether you are struggling or doing well, we are all welcome here as far as I'm concerned.
    Caryn
  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited July 2015

    Thanks Caryn. Who knows, I may get brave enough to post pics of the mini-hoons otherwise known as kittens here at some point. :)


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

    WELCOME,ALL KITTIES, PUPPIES, FLOWERS, IRREVERENT CARTOONS AND WHATEVER ELSE STRIKES YOUR FANCY!!!!

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,316
    edited July 2015
    Well, my bco life has been less than normal 😕. I started a brouhaha , quite unintentionally. It is not entirely understood by the general membership, because some of it was private and shall remain that way. I think people should be free to rant and let off steam about bc and how it effects our lives. There has been no censorship or moderation with respect to that, but when things get personal, after attempting to resolve issues via pm, then the mods must step in. I just feel strongly that this "open mic" should not include disparaging, mocking and generally demeaning remarks about other members, either on public posts or pm's. I have no trouble with agree to disagree as long as we stick to the issues, but bullying? No, never. So, I may have cooked my own goose on bco, and will deal with the consequences, but I was privy to the whole story and stood up for myself and am thankful to the mods for their support. You are an amazing group of women and I hope we can get past this. There are no sides in my eyes because, ultimately, we are battling the same beast.

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