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

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Comments

  • divinemrsm
    divinemrsm Member Posts: 6,621
    edited June 2014

    I can sort of remember the early days after I was diagnosed with bc.  I was panicked, confused, upset and a myriad of other emotions.  I thought, 'what do I do? what should I do? how do I feel? what do I think?' I didn't know what normal was any more. Then I found this forum, and started reading of experiences others in my shoes were having and it was a lifeline.  I never would have thought I could rise above the fear I felt, but one step and one day at a time, I moved forward. I found a new normal and have packed a lot of living into these last 3 and a half years. A lot of very satisfying living.  

  • cling
    cling Member Posts: 263
    edited June 2014

    I certain hope life does not end with a stage IV diagnosis. MD Anderson second opinion just confirmed what my Onc suspected in the past year that I have mets to bones.  I didn't have any symptoms and past PETs, bone scans and biopsies were all negative.  Only CT picked up some suspicious spots and TM continues to rise that my frustrated Onc finally sent me for a second opinion.  I have been off any meds for three months and will meet with my Onc in two weeks to discuss treatment plans.  

  • AmyQ
    AmyQ Member Posts: 821
    edited June 2014

    So very sorry to hear this cling, however I believe bone mets are one of the most manageable of all the mets and hopefully once you receive treatment, will be dancing with NED for a very long time. Welcome to the club no one wants to join.  You will find lots of support here.

    Amy

  • gonegirl
    gonegirl Member Posts: 1,022
    edited June 2014

    Happyhey. Liver mets folks live a long time too. 

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,316
    edited June 2014

    cling,

    Sorry to hear about your mets dx. The reason I titled this thread the way I did, was to help the new stage IV members know, that after the initial shock and panic, many can lead, changed, but fulfilling lives for at least a good while. There is no need to put one foot in the grave or donate your clothes to charity, quite yet. This disease will get the majority of us in the end, but not quite as immediately as some may think. I'd also like to acknowledge that some of our sisters have reached a point were things are very rough and their lives are far from normal. Still, it takes many of us by surprise when we realize how much we still can do! All the best to you.

    Caryn

  • sherbab
    sherbab Member Posts: 21
    edited June 2014

    Caryn, I too love this thread!  I am at MD Anderson as someone else had mentioned and 2 weeks ago it was a whirl wind mess with me being diagnosed with brain mets.  I have completed my 10 rounds of whole brain radiation and tomorrow we see the clinical trials doctor to see if there are any other options.  I still work full time, love my life but have moments of what to do next.  This weekend I was in full fear of purchasing new shoes....why....did I really need them, should I spend the money, etc??  Then I snapped back to it and realized I am here and need to live my life.  Yes, things have changed - am I slower, absolutely, can I entertain houseguests for 12 hours without a nap, heck no but I am pushing forward to enjoy the time I have and cherishing every moment with family and friends.  This post has given me all kinds of perspective I plan to take forward, as well as stop by and chat with the group!  This is exactly what I needed to find.  Thank you!

  • Saq
    Saq Member Posts: 3
    edited June 2014

    I guess I have been a 'lurker' for some time now ;) initially dx with stage IIIa, and then 3 years later upgraded to stage iv (upgraded makes it feel so fancy!). I never had much complications from any treatments - at least not when I read other peoples stories. In fact, I still finishedy last semester of UC Berkeley while undergoing chemo. I did lose my hair, but bought a few cheap wigs and received fun comments like, "oh your hair is so versatile!", which quite amused me. The surgeries, radiation - it just didn't hit me hard physically. Emotionally I did OK, but I am starting to realize I feel guilty for not being the embodiment of cancer for everyone else. 

    After the mets to the bones and lymph and liver, I found myself aggravated when family would share their pain of my DX with aquantances, especially dreading the moment I would be asked; " how are you doing?".  Guilt for not being in enough pain. So weird.

    I really appreciate this thread. It is so nice to see other people loving their life, living their life, as fully as they can. We can't really change or determine how this life will continue, so hearing others vent positive is so helpful. 

    Also, I don't mean to imply all is perfect - it's not. My c7 fractured January, and although I continued working and going to rad treatments (docs took a couple weeks to figure out why I had excruciating pain), I am now off work waiting to see if the bone will grow back enough to stave off surgery for now. I have just turned 1 year old and the thought of not being able to play with her for 6 weeks post surgery makes me even more against the idea. But other than the bone fracture (seen only with xray, in person I look like nothing is wrong) I'm doing great. Not taking pain meds, still mobile, some little pains and aches and numbness occasionally, but I take it easy.

    Anyhow, I might be off topic and rambling... But its so nice to see the positivity exuded here. I keep saying its possible to be an outlier...if I was in the 1-2% of people my age group to have breast cancer, I gather I could be in the same statistical group who becomes an outlier and lives for 20+ years. 

  • intothewoods
    intothewoods Member Posts: 179
    edited June 2014

    This was the first thread I read after diagnosis in April and it helped tremendously. I understood how it was upsetting to some and still the overall "truth" that many won't die immediatley and can live lives mostly as before was wonderful for me. Yes there are not-so-normal times even in the beginning. I am struggling with skin problems and some fatigue from radiation but like Caryn, will also deal with report cards today, (I feel your pain) Kindergarten Visitation,  my evaluation meeting with the boss, and the fundraiser Game Truck reward this afternoon before going to my last radiation treatment. Yea for me. Happy

    Thanks for this thread Caryn

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,316
    edited June 2014

    intothewoods,

    I'm glad this thread was a positive thing for you, especially right after dx. What grade do you teach? I taught kindergarten for many years before moving to grade 1. Tomorrow is our last day of school and as much as I love teaching, I'm ready for a break! Take care.

    Caryn

  • Nel
    Nel Member Posts: 597
    edited June 2014


    I continue to love this thread.  I was told I was stage 4 in Aug 2013, but they had begun testing and ruling out other possibilities a year ago this month.  So I count this as my 1 year anniversary of living with stage 4.  I work, sometimes work my butt off like the rest of you, raise my teens , enjoy my friends and some times whine (and wine).  But overall doing amazingly well.  Going to California in a few weeks with my kids.  Part work , part vacation for me,  all vacation for the kids.  Making memories for the day when.....  But I also hope to be an outlier, another 20 + years I hope.  My met went to my adrenal gland, go figure, have been need since first CT following return to treatment.  Fingers crossed = CT Scan in the am.  I only have time for good news.  Too much living to do.  

    Nel

  • car2tenn
    car2tenn Member Posts: 132
    edited June 2014

    Thank you for the opportunity to tell all that I am now 6 months out from the initial diagnosis which was Stage 4 ... I have changed to a new oncologist this week.  She echoed others who said  mine was the one in a million that they don't understand..I had had proper care and mammograms and still was unable to catch it before bone mets.  I have learned a great deal in the last six months.  I have taken a step forward in spiritual strength, enjoyed new bonds among family and friends and am surprised at how big a quality of life I enjoy .  I agree with everything Caryn has written..If your day is full of anxiety let your MD prescribe some anti anxiety medication. Continue with some kind of exercise, good diet and let joy continue to be your strong suit.  Blessings to all of us who are traveling this stage 4 highway. Carolyn

  • intothewoods
    intothewoods Member Posts: 179
    edited June 2014

    Caryn: Congratulations on your last day of school! By the time you see this you will have fondly wished your 1st graders well. I think teaching is physically, mentally, emotionally and even spiritually demanding and for those of us who are most passionate about it need our breaks to rest and refresh the most. I taught for 19 years moving grade levels a lot: 1st, 2nd, 3rd, 4th and 5th. I found first grade to be the most challenging- it's a vitally important year and we need our best teachers in the primary grades. I have often thought, reading your posts that you are one of the best. Kindergarten still scares me and I tell my kinder teachers that!  Seven years ago I moved into administration. There are days when I think "What was I thinking?!?!" On those days I try to spend as much time in the classrooms as possible. Our last day of school is next week. My district expects principals to review all the report cards which I find insulting to professionals so I often just review those of the new teachers or those teachers who need more support. Ssshh, don't tell. :-)

    Nel: I hope your scan brings good news and enjoy California! What part will you be visiting?

    Carolyn: You have beautifully reinforced the message of this thread and I  wholeheartedly agree that anti anxiety meds/antidepressants can be helpful.

    Happy end of the work week!

    Lisa 

  • chele
    chele Member Posts: 132
    edited June 2014

    It's been a while since I first posted here.  My cancer has run amuck, spreading to so many bones, and now both lobes of the liver.  I'm 3 years, 3 months out from my stage IV diagnosis. 

    I went ziplining and whitewater rafting last weekend!  I had gone last year, but this year I scheduled my trip for the spring thaw so I could catch some really huge water and BOY did I!!!  It was awesome.  Somewhere along the way I injured my fragile back, feels like something broke in between my shoulder blades.  If it was because of the trip it was SO worth it! 

    I am switching chemo once again.  So far the only chemo of seven that I've tried was Navelbine.  Trying Carboplatin/Taxol this time.  It sure would be nice to see my tumor marker go down.  Until then I'll be getting the camper ready for our next adventure in August!  I'm going to live until I die Happy

     

  • susaninsf
    susaninsf Member Posts: 1,099
    edited June 2014

    chele, You inspire me!!!  Sorry to hear about your cancer running amuck but hopefully the new chemo will reverse that trend.  Love your attitude and the fact that you are definitely going out there and living your life!

    Hugs, Susan

  • tina2
    tina2 Member Posts: 758
    edited June 2014

    I've been eager to post this comment on this particular thread. Today is the day!

    Today is the third anniversary of my Stage IV diagnosis and beginning treatment with an anti-hormonal, Faslodex. I have had the good fortune to thus far remain on that one treatment, which got me to stable/NED within a year or so. 

    Three years ago, I was in shock, thinking perhaps I would die within months. Now I am living with Stage IV cancer. And living pretty darned well--traveling, working, volunteering, playing, even recently having a hip replacement so I can continue an active lifestyle.  Yes, I see my onc monthly, get scans and blood draws, and heavy-duty injections, however the more time goes by without progression, the longer I think I might be hanging around. 

    When there is progression, I know my oncologist has an entire armamentarium of other treatments at his disposal.

    So yes, newbies and all, there can be plenty of life after a Stage IV diagnosis: mine is just one more proof.

    Tina

  • chele
    chele Member Posts: 132
    edited June 2014


    Thanks Susan!

    Tina, I'm so happy for you!  You go girl, I hope you can stay on Faslodex forever!

  • Nel
    Nel Member Posts: 597
    edited June 2014


    Chele - Ugh, I really do dislike this cancer thing. Hope you find an effective treatment with few se's!  You go girl, you are not letting cancer rob you of a single moment

    Intothe woods - we are spending 3 days in Carlsbad and then 4 days at Disney for a conference I am attending for work.  Looking forward to the just sitting part of the trip

    Scans today continue to be clean so the dance with NED continues.  I am so very grateful.

     

     

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,316
    edited June 2014

    I've been reading about some excellent adventures on the "what are you doing for fun thread?". The school year ended a bit over a week ago and I've been catching up on things that get neglected during the school year. 

    - House cleaning. I do it but it's an exercise in futility. Pomeranian fur is the major battle and since younger DD and SIL are temporarily living with me in my modest townhouse, the neat and tidy look never lasts long. Sigh, I need to let this one go.

    - Patio clean up. I often refer to my patio as postage stamp size, and that's not much of an exaggeration. How is it possible for so many leaves and so much debris to find it's way onto my little outdoor paradise?  On a positive note, jalapeños and  Anaheim chilies are doing well. My basil is thriving and my Juliet tomato plant, a new variety for me, looks good. My Meyer lemon tree is full of glossy leaves, but only one lonely lemon. I do need a new umbrella but will wait for 4th of July sales. I am finally enjoying my gas grill which was purchased on line at a fabulous Black Friday sale (and sat in the garage all winter). 

    - Fiber arts; isn't that a great term? Nålbinding is coming along. I can now make a decent Oslo stitch and can attach the ends. Working on a second, and subsequent rows, not so good, but I persevere. After all, I am learning this through YouTube videos, many of which are in Finnish. To soothe my ego, I also used YouTube to learn lucet braiding (another ancient fiber art) . This amazingly easy. If you ever used a knitting Nancy (those spools with little nail heads that you looped wool over) as a child, then lucet is for you as it is the ancestor of the knitting Nancy (we called them horse reins).

    - medical appointments... The bane of the stage IV life. After almost 3 years, my se's on Arimidex were worsening, not unbearable but getting there. Lengthy discussion with my mo resulted in a switch to Femara. I am nervous, since I have been NED on Arimidex. My mo feels, that in terms of keeping my mets in check, the switch to Femara will continue to do the job. So, I hope to remain NED but lose the awful joint and bone pain. I'm only 3 days in to the change so it's too soon to tell. Next up? The dentist:)

    - Learning Norwegian. Only one thing can really help at this point; a trip to Norway. Since that is not on the horizon, I'll keep plugging away. Jeg kan snakker litt norsk!

    Let's hear it for normal, in any way, shape or form you experience it.

    Har det bra,

    Caryn 

  • intothewoods
    intothewoods Member Posts: 179
    edited June 2014

    The housekeeping- ha! I rarely even try. For many years I had help twice a month and as a cost saving measure went to once a month recently and it is not working well at all. :-)

    Just this morning I commented on how badly the floors need going over. It won't happen. I must see Jersey Boys today.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,316
    edited June 2014

    The play or the movie? I loved the play and couldn't stop singing for days. If you see the movie, then a review is in order! Enjoy.

    Caryn

  • intothewoods
    intothewoods Member Posts: 179
    edited June 2014

    Hi Caryn,

    The movie. I saw the play a few years back and had the same non stop signing reaction but then again I am known to sing show tunes at random moments. I will post a movie review. My favorite movie reviewer is Kenneth Turan and his review in the L.A.Times was positive. I don't think it will make his top ten but he enjoyed it.

    Lisa

  • intothewoods
    intothewoods Member Posts: 179
    edited June 2014

    Here's my review on Jersey Boys from someone who knows zip about film criticism:

    I recommend the movie if:

    1. You like the Four Seasons music:  (if you aren't sure google it and I'll bet you know many of their songs)

    2. You have the same juvenile fascination with italian mobsters as I do. (My paternal grandparents ran an italian restaurant in San Francisco and were Swiss born of Italian descent. That's my excuse and I'm sticking to it.)

    3. You liked Goodfellas.

    4. You like a really good story.

    I loved it.

    Lisa

  • divinemrsm
    divinemrsm Member Posts: 6,621
    edited June 2014

    It's a movie I hope to see, I may even go to the cinema by myself if I can't get anyone to to with me.  While a lot of moms were crazy over Elvis, my mother was a bigger fan of Frankie Valle & the Four Seasons so I heard a lot of that music growing up.  Now you really have me wanting to see the movie.

  • GatorGal
    GatorGal Member Posts: 750
    edited June 2014

    I haven't been on this thread lately but just celebrated 6 years post stage IV diagnosis in May,  All of you who know me from BCO know that I have done lots of fun stuff since diagnosis, as Chele and many others have.  My most enjoyable time is spent with my grandchildren, of course!  I've been on many AI's, and lots of different chemos and have managed to keep the cancer from progressing outside the lungs.  I retired from teaching 3 years ago but kept my twice monthly housekeeper because "maybe someday my husband will need her and we don't want to lose her."  LOL!  I just want to preserve my energy for the fun stuff!  I'm on carboplatin now and while it seems to be working, it is kicking my butt.  I'm down and out for at least 5 days after treatment.   Still.  Life does go on and while I have plans for when ... I feel pretty confident that when is no time soon!!   And hey, seeing a movie this afternoon sounds like a great idea!

  • Vadre
    Vadre Member Posts: 159
    edited June 2014

    "...Too much living to do."  Nel

    ".....and let joy continue to be your strong suit." Carolyn

    Amazing words from strong, centered and realistic women. I never leave BCO without feeling stronger than when I arrived. Even when I arrive frightened and in tears...I might still be afraid and crying when I leave but at least I won't be alone and I'll be reminded that "new normal" is transitory. One day at a time is a wonderful plan, probably vital to MY mental health at the very least. It's also a hell of a lot easier to face this one day at a time with y'all close by. 

    Virginia

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,316
    edited July 2014

    More scenes from a normal life...

    Today is my mother's yahrtzeit, the anniversary of her death, and the first one at that. Tomorrow, I'll be flying to the east coast for a couple of weeks to visit family and attend the unveiling of her gravestone. Some of you may remember how the Asiana plane crash in SF delayed my getting to the east coast until after she had passed away. That is the one aspect of her death that I still wrestle with, but she had a good long life and attended my younger dd's wedding and got to spend time with her great granddaughter just 3 weeks before her passing. I am looking forward to spending time with my father, brother and sister in law as well as my oldest friend, who still lives in the Bronx. Yup, just the sort of normal stuff that I cherish all the more. Time to go for a pedi and run errands.

    Caryn

  • AmyQ
    AmyQ Member Posts: 821
    edited July 2014

    Safe travels to you Caryn.  I married into a Jewish family and have come to love the traditions and symbols of the Jewish faith which often mirror my Catholic beliefs and upbringing, so I feel very much at home.  My condolences on the loss of your beloved mother.

    I met with my Onc today and she gave me A+ on much of my blood work including CA 27-29 and CEA as well as my liver function tests.  Next PET/CT in 3 months so for now I'm going to kick up my heals and continue to pray for excellent health.  

    We had an old-fashioned 4th of July by celebrating at a 2 hour parade in my hometown and then a picnic along a creek. I decided to be the crazy grandma and bought fireworks for my grandchildren (to view not light) and we had a pool party yesterday with the first 90 degree day of the year.  

    My hard-working handsome husband and our Goldendoodle and I leave for 2 weeks vacation in northern Minnesota this Saturday. It's the second year we've rented a rustic log cabin just 12 feet from the shores of a quiet lake on 8 acres of land...(read NO NEIGHBORS) We rented this place for the first time last year where I recovered from my last chemo (July 3rd) and it was perfect. We rented the owners pontoon, fished, swam, read and slept. It was exactly what I needed to heal, disconnect from society and be lazy. I'm hoping for much of the same, only this trip I'm celebrating my continued relationship with NED. 

    For the first time I'm even thinking of closing my business and trying something new.  I've had a lot of success with my wedding planning business but I'm bored and tired of all the travel. I've become a home body and really appreciate the comfort of my home, husband, dog, cats, gardens and perhaps I'll get back to riding dressage and maybe dabble with jumping after my confidence is up.

    So life really does go on. I hope you lovely ladies are doing well and continue to do so for many years. 

    Amy

  • Vadre
    Vadre Member Posts: 159
    edited July 2014

    Caryn, What a wonderful practice yahrzeit is. The first time I experienced it I was overwhelmed with the opportunity it gave family to celebrate and comfort after some healing time. I have often thought that I would like to "borrow" yahrzeit for my family when I die. I will be thinking of you as you gather to remember your mother. 

    Amt, What a difference a year makes! I'm so glad you get to return to such a beautiful & healing place. It's amazing what time by the water can do for us. Quiet time with your partner isn't bad either!!

    I'm on a little, spur of the moment trip with my DH, ds and nephew. We're in a place that is new to me, Kiawah Island SC.  I thought, while exploring last night, how good it is to be able to still do new things. Living one day at a time and looking forward with a positive attitude. Sounds so simple and yet it's not. It is necessary enough, isn't it?

    Peace,

    Virginia

  • tarheelmichelle
    tarheelmichelle Member Posts: 248
    edited July 2014

    This is a really wonderful thread Caryn. You've explained Stage IV living so honestly. I hope your travels renew your spirit, as you visit with family and remember your mother.  

  • intothewoods
    intothewoods Member Posts: 179
    edited July 2014

     I've also always admired jewish traditions and haven't heard of yahrtzeit before. Really wonderful. My BFF is Korean and they have a tradition (not a religious one) of a rememberance ritual on the anniversary of loved ones death. 

    I'm joyously planning my vacation- first to Nelson, BC then Seattle and finally to Timberline Lodge at Mt Hood. I'm spending lots of money on hiking gear, excited to get back into hiking after a long time of not and planning on many more years of hiking and vacationing which I have not done much of due to caring for aging parents. How is it that we so easily forget how important vacations and nature are!!! Maybe it's just me who forgot.

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