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

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  • Positive2strong
    Positive2strong Member Posts: 316
    edited August 2021

    sS

    See Q

    Thanks, I really haven’t heard from anyone that they were so sick in the beginning.

    My husband is nervous that I am off Ibrance for about 5 days now.

  • Positive2strong
    Positive2strong Member Posts: 316
    edited August 2021

    April girl

    Thanks for your comments, I need to hear I won’t always feel this bad.

    Leigh68 I agree and second your sentiments so glad to hear exbmxgr

  • Jsniffs
    Jsniffs Member Posts: 65
    edited August 2021

    exbrnxgrl - Sending positive thoughts for your scan.

    Positive2strong - While everyone's journey is different, I can say that I've had multiple instances of "I get knocked down, but I get up again." I was initially diagnosed during pregnancy, and the combo of that with chemo made me so dizzy I couldn't even walk to the mailbox. I had no idea what to expect, and I thought I might be that way permanently. Now, I can walk for miles. Recent radiation made me so tired, I could barely do anything, and it really depressed me. I kept reminding myself, I've gotten better before, and I'll do it again. It's hard to deal with pain in the present moment. Sending you lots of healing thoughts.

    Also, Ibrance can't be taken without Faslodex. Ibrance is an adjunct (I like to think "turbo booster"), but Faslodex is the primary therapy. Therefore, just the fact that you are still on Faslodex is important. I've seen reports of people being on Faslodex alone for years. Hopefully they can figure out a good Ibrance dose for you because it generally does extend ones stay on Faslodex. I started Faslodex a couple of months ago and added Ibrance recently.

  • sunnidays
    sunnidays Member Posts: 124
    edited August 2021

    exbrnxgrl hope all goes well, Positive2strong my side effects were worst in the first few months of treatment so it will get better, all treatments have side effects. As for life going on it really does, we went to a wedding last week and had a ball, I am working part-time, we are going on a short holiday to a nice hotel, I got some nice underwear just going to have a bit of fun with my husband A young colleague of mine said to me one day she was pretty sure her parents were not having sex anymore because they are in their 60s!! it made me laugh so much, I suppose for a 27-year-old, people in their 60s are ancient.

  • Anotherone
    Anotherone Member Posts: 633
    edited August 2021

    sunnidays, very happy for you , wishing you to keep it up this way for many many years.

    That was a silly comment about 60s and sex - I would understand if she was 10 but for someone in 20s is strange. Although to be fair the older we get the higher the proportion of sexless couples

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2021

    In the famous words of Walter Mercado, “ ¡Mucho, mucho amor!” I thank you all for your support as I faced the most nerve wracking PET I’ve ever had. I am very happy to say that all is well and I remain NEAD. Of course I am thrilled but I need to figure why I got myself so worked up before the scan. A million thanks to all of you 😘

  • star2017
    star2017 Member Posts: 827
    edited August 2021

    OH MY GOODNESS! SO happy for you! Thank you for the update. I had been hoping for good news.

  • Tina2
    Tina2 Member Posts: 2,943
    edited August 2021

    Caryn,

    As a veteran of this MBC business, I suggest that your anxiety might have been caused by something I have experienced throughout my life. I call it "placating the gods." At times when I become aware of having a particularly good run of fortune, I recognize that this streak could end at any time. I then "sensibly" acknowledge "This too shall pass," which can throw me into a bout of hyper-vigilance and worry.

    Primitive, yes. But controllable when I remember that I prefer to smite myself before the Gods/Goddesses/Fates do. How absurd is that?

    Not a diagnosis, just a theory!

    Tina



  • Tina2
    Tina2 Member Posts: 2,943
    edited August 2021

    Caryn,

    As a veteran of this MBC business, I suggest that your anxiety might have been caused by something I have experienced throughout my life. I call it "placating the gods." At times when I become aware of having a particularly good run of fortune, I recognize that this streak could end at any time. I then "sensibly" acknowledge "This too shall pass," which can throw me into a bout of hyper-vigilance and worry.

    Primitive, yes. But controllable when I remember that I prefer to smite myself before the Gods/Goddesses/Fates do. How absurd is that?

    Not a diagnosis, just a theory!

    Tina



  • SeeQ
    SeeQ Member Posts: 884
    edited August 2021

    exbrnxgirl- Hurray! Keep on dancing with Lt NED!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2021

    Exbrnxgrl - SO HAPPY FOR YOU! such a relief! Thanks for the update.

  • Chicagoan
    Chicagoan Member Posts: 728
    edited August 2021

    Caryn-So glad to hear this news! Now back to living life.

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited August 2021
  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2021

    Great news! Happy to see this

  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited August 2021

    Caryn, that is great to hear! My homework for you is to rid yourself of the guilt of being one who's getting long term results from a hormonal treatment. You don't have to become a full fledged vegetarian, take copious amounts of supplements, run monthly marathons or otherwise "earn" your results. They speak for themselves and that is good enough!!!!

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2021

    Camille,

    Thank you for understanding my guilt, as most people don’t. Logically I understand that there is little rhyme or reason for why any of us experience progression or not. Emotionally it is very difficult for me because so many here work so hard to stave off progression. I have gotten more than my share of pm’s asking what I’ve done to achieve such a long streak of progression free survival. I have no good answer for them . Some don’t seem to believe that but really, all I’ve done is follow my mo’s to plan. When you’re a slacker but survive it’s hard not to feel guilty when others have worked so hard and don’t survive.

    Again thanks to all for your congrats. I am so glad to be on annual scans now!

  • NCYogi
    NCYogi Member Posts: 47
    edited August 2021

    Exbrnx/Caryn! I have been checking in daily hoping to hear from you… so glad to hear the awesome news! Whew… I know you are relieved.

    Even though there is no “magic potion” for you to share with us, we are all still so happy for you. Here’s to another healthy, scan-free year!

  • SF-Cakes
    SF-Cakes Member Posts: 316
    edited August 2021

    So happy to hear this good news! ❤

  • sunnidays
    sunnidays Member Posts: 124
    edited August 2021

    Exbrnxgrl delighted for you, I think being superstitious is almost normal in our situation. The hotel trip was lovely and the hotel had a gorgeous outdoor hot tub overlooking a river, it was comical at times the average age of the staff was 15 and they had not been giving any training, I dont know what the hotel is going to do when schools starts again next week.

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 1,031
    edited August 2021

    Positive - there are god days and bad days, I hope yours get better and stay that way. Covid, the weather, fires make things worse. Do what you can and what brings you happiness.

  • Positive2strong
    Positive2strong Member Posts: 316
    edited August 2021

    Blue girl red

    Thank you

  • sunnidays
    sunnidays Member Posts: 124
    edited August 2021

    Positive2Strong have you tried councling I tried it at the cancer center I go to it didn't do anything for me however she did explain how to get more out of appointments with the oncologist which did help.

  • Piggy99
    Piggy99 Member Posts: 229
    edited August 2021

    Caryn, so happy to hear about your clean scan! First decade with MBC down, here's for another one with nothing but the joys of retirement and grandbabies.


  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited August 2021

    For well over a year, I've committed to setting firm boundaries with my (6) siblings, including staying away from family gatherings. It's been so much more difficult than I imagined but totally necessary. It wasn't till the past few months I began getting great clarity on the tangled relationships. That lent itself to having a pretty good summer as I had time and energy to do what I truly wanted to do, rather than getting drained and irritated by my extended family,

    One problem was a couple sisters want to make me the sad story of the clan. A get-together would go something like, “Fred, congrats on the new house!" “Sally, so excited about your pregnancy!" “Sue, fantastic about your job promotion!" and then…"Camille, how were your CANCER SCANS?" It's the one thing they want to associate me with. It sounds like they're caring, but what they're really doing is reminding me that even tho I have many good things in my life (which they don’t acknowledge), toooo bad about that stage iv cancer thing. Plus, why would they think I want to discuss a very personal matter over top of loud, happy conversations and interruptions of a party? So I called them out on it. I've been to one get-together in 1 1/2 years. It's been emotionally challenging yet very freeing.

    So much of life is relationships. Living with mbc make me very aware that I don't want to waste time tolerating things I don't have to tolerate. I'm always a work in progress, but these days, I check in more often with myself about how someone else is making me feel, and when I don't like how I'm feeling around them, I make adjustments.

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited August 2021

    Another reason I didn’t take DH ashes sent DD instead. Rotten of me? Maybe. I didn’t want to hear them about my cancer and his. They couldn’t be bothered to see him before he died. I couldn’t be bothered after he died. I’m sure I won’t miss them.

  • sunnidays
    sunnidays Member Posts: 124
    edited August 2021

    I have only recently told my siblings because with a big family wedding in July I did not want everything to be about me all my siblings have been great to me. I have told them I don't want every conversation to be about me I want to hear the normal news from everyone so far so good. I think the fact that I am still working has reassured them a bit.

    One of my brothers who is a farmer never got married and is a bit cut off from life said to me they can cut it out everything will be alright I didn't correct him because what would be the point he means the best.

    They love my husband and he might need them for support and I do think about that.

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2021

    sunnidays,

    It’s funny how time changes things. I am ten years out from my stage IV dx and virtually no one asks about my bc! Sometimes I get a little miffed but I kind of understand since nothing about my life screams stage IV. I really do think that some folks think I have beat cancer but most don’t really have an understanding of stage IV. When I do progress, I imagine the shock will be huge for some!

  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited August 2021

    I was supposed to be the emotional cripple of the family, a failure. But I was just a late bloomer. I eventually got an associate's degree, a good job, in my 30s I married a good man, remodeled a fixer-upper, raised a great kid, am financially stable. My sisters don't know how to relate to me on this level. They were so sure I would be a lifelong embarrassing burden to them, that's what they wanted. They thought I should live my life by their rules but I followed my own and succeeded. I've even done better in some ways than several siblings, which messed with their heads.

    One sister is about self-sacrifice: “there's not enough to go around, I will give you mine." Must cheerfully, always put others before herself.The saint and martyr. It's not enough for her to be that way, she expects me to deny myself, too. Like since I have nice things and a good life, I shouldn't enjoy them, I should always be doing for others as if to apologize for my lifestyle (which was created through hard work and making responsible choices). If I don't do it that way, I am selfish. Well, I see life as a both/and, not an either/or. I feel that there is enough to go around and I don't have to give up what I have for others to get what they want/need.

    But I am done with the put-downs and the cult-like insistence that I do things their way. I recently saw a meme that said, “The most satisfying adult sentence: 'Yeah, I'm not going to do that'.“

    Sound about right!




  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2021

    Camille,

    You turned out to be an excellent human being! What’s not to love? 😘

  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited September 2021

    Thanks, Caryn, for your comment! Family relationships can be a complicated web of many issues.

    In the meantime, I mentioned having a good summer. Once I was vaccinated (already got a booster shot, too) and pandemic restrictions were eased, I got out and about. I took a garden tour, an historical home tour and went to a covered dish lunch where my husband works and met lots of people in the building. We went to a 50th wedding anniversary party and also the one family gathering I mentioned, when a sister visited from Alabama with her son's family. Starting in June, dh and I also made good use of our pool pass, going several times a week. It's two minutes away. Early mornings are for adult swim which I especially like, and last week the group of us who go at that time had a covered dish lunch at the picnic shelter there. The season ends this Saturday and we'll miss it.

    I met a woman at the pool who told me about a weekly line dance class in town, so I've been going to that, too and it makes me so happy! We are all in our 60s-80s (yes, 80s). Low-key exercise plus I'm learning dance step names and timing. Right after the beginners' class, a group who've been at it for years takes the floor and it's so fun to watch them! No big, splashy showing off, just everyone dance stepping together and boy do they know their stuff! It's impressive.

    The pandemic year was challenging, so I'm grateful to be able to have more to do this year outside the home. Along with flower gardening, cooking up vegetables from dh's garden and taking care of a few home improvements like getting new gutters on the house, it may sound like I'm non-stop busy, but I most definitely still need big chunks of down time. I make sure to include plenty of days where all I do is stay home and take it easy, and turns out, that's something I'm pretty good at, haha!



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