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

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  • nopink2019
    nopink2019 Member Posts: 329
    edited May 2020

    divine, you inspire me

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  • M-and-M37
    M-and-M37 Member Posts: 47
    edited May 2020

    ladies you are all so inspiring. I’m trying to find the light after being staged at a 4 a year and a half down the road. I’m definitely going to add you to my favorites list just so I can find a quiet place sometimes. I go in for my first planning consult on Wednesday. I’m scared but I want to get it in the rearview mirror. Nervous about chemo mostly. Didn’t do very well with it the first time around. Surgery and radiation was a piece a cake in comparison

    I too love the spring time. Looking out my window is so inspiring. Even more fun is watching my cat look outmy window. Endless amusement. Well these little things are the best sometimes

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited May 2020

    WelcomeM-and-M37,

    I hope you find some hope and inspiration here. None of us are denying the seriousness of an MBC diagnosis or the effects it has on your life but there is a surprising amount of normalcy that many (not all) of us experience. It’s nice to learn to relish those moments and not put our feet in the grave prematurely. Take good care

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  • moth
    moth Member Posts: 4,800
    edited May 2020

    M-and-M37, welcome to the suckiest of all clubs. Life doesn't end with the diagnosis, but life as you know it does. There are a lot of adjustments ahead.

    be sure to join the subforums for the specific mets you have. I find treatments and symptoms really vary & it's been helpful to join those threads and know what to expect.

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  • candy-678
    candy-678 Member Posts: 3,950
    edited May 2020

    moth- I appreciate how you worded it -- " Life does not end with the diagnosis, but life as you know it does". So true. I am still living, but every aspect of my life is different--- job loss, finances, socially, mentally, physically, spiritually. I am not the same person. My priorities have changed. I see things in a different light. This changes a person.

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  • M-and-M37
    M-and-M37 Member Posts: 47
    edited May 2020

    I know right. I was sitting in this meeting today, and everything was so important to everyone else in the room, but this Litany in my head was what my dad used to say when I was a little kid and I was crying about something stupid, just kept thinking “I’ll give you something to cry about”. And that made me chuckle out loud. Thank God I was wearing a mask. It’s funny now that I put it out here. thank you for the warm welcome and the words of wisdom.


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  • Anotherone
    Anotherone Member Posts: 633
    edited May 2020

    I remember I have felt as if there was a thick plexiglass partition between me and everybody else when we had a bbq a few weeks after diagnosis..

    That feeling has gone now - if I feel close to death again I guess it will come back ..

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited May 2020

    Winter returned today with 5 inches of snow and cold to greet more returning hummingbirds. Poor babies. Their nectar was frozen, but now thawed with the sun coming out. Happy Monday and Memorial Day!

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  • M-and-M37
    M-and-M37 Member Posts: 47
    edited May 2020

    my goodness. super hot and humid here in the Chicagoland area. Upper 80s. I’m not doing too well with the heat. Making me a little dizzy to be honest. I’m out a little more frequently because, drumroll, my boyfriend gifted me with a Boston terrier puppy on Friday. So sweet and a great distraction. We are working hard on potty training and it’s keeping me busy. Here is Rosie. image

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  • Tina2
    Tina2 Member Posts: 2,943
    edited May 2020

    Hi, Rosie! What a cutie you are!

    Tina

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited May 2020

    Oh, that pup is adorable! I have been without a dog for almost a year now but plan to get one when I retire. Enjoy your new fur baby

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited May 2020

    ooooooo puppy breath❤️❤️❤️❤️❤️❤️❤️

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  • Chico
    Chico Member Posts: 196
    edited May 2020

    Rosie is a lovely puppy lucky you. I love dogs we have just 2 now a Wolfdog and a little rescue x breed. I also have cattle, sheep ducks, geese and tortoises.- happy days.

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  • M-and-M37
    M-and-M37 Member Posts: 47
    edited May 2020

    thank you ladies. I love puppy breath also. Those sharp little teeth in that soft little tummy. Nothing quite like that. I hope her little face made you happy. She is wonderful and distracting. I did get my fish results. Thankfully, oh my cancer is HER2-. I start Ibrance and Faslodex next week. I have to say that in this case I’m glad it’s the devil I don’t know as opposed to the devil I do. Have a hard time with the IV chemo. I know that this will be challenging as well, but it is a relief. I wish I could sleep like this.image

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited June 2020

    Hello,

    I wanted to say hi to the new members and especially those looking for encouragement as newly diagnosed Stage IV BC patients. A quick summary, it's been over 7 1/2 years for me. I was dx de novo which actually means cancer started probably years before it was actually diagnosed. Even after annual mammograms, it was missed until Feb 2013. I had bilateral mastectomy and after healing, 5 rounds of Taxotere and Cytoxin which got me to no evidence of disease for about 2 years. Since then I've been on one form of chemo or another, mostly oral. Last October I started on Halovan which worked for about 7 months.

    During all these years I've been an avid horseback rider, rescuing two beautiful horses from kill pens. I've gone downhill skiing which didn't go so well. I love swimming and scuba, have 7 grandchildren with twins on the way and continue to look cancer-free.

    My oncologist wanted me to start on Doxil in early April but I've decided to give myself a chemo break. I am giving my body a chance to catch up and heal before we jump back in. It feels great. Other than hip pain due to cancer in my pelvic and hip bones, I'm doing great. I have suffered Post-mastectomy pain syndrome which I take pain meds for.

    So I really want you to know, as Caryn and others have said over and over again, Stage IV doesn't mean immediate death. I do hope you all can continue to live good, long, loving and productive lives. I think for me, once my quality of life suffers, I will re-evaluate, but for now I'm happy with the choices I have made. I will enjoy the summer of 2020 (crazy as it is) and look at chemo again this fall after the twins are born. I want to help my daughter who already has 5 children under the age of 11.

    Thank you for the support from everyone here.

    Amy

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited June 2020

    Amy, kudos on 7.5 yrs with MBC! You certainly do give me hope and I'm certain many others. You've done some living and that's the best medicine of all. Taking it as it comes and continuing to live our best lives is all we can ask for and do. Enjoy those grand twins when they arrive. How exciting, and congratulations!

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited June 2020

    Oops, sorry! Double post!

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited June 2020

    The past two summers I had surgery on my right and then left foot respectively, knocking me out of commission to tend to my perennials. With two good feet this year, plus pandemic restrictions keeping me home, I've been able to fuss over my flower beds and wow, how great they look!


    image


    image

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  • helenlouise
    helenlouise Member Posts: 420
    edited June 2020

    just beautiful Divine. Thanks for sharing

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  • Tina2
    Tina2 Member Posts: 2,943
    edited June 2020

    Gorgeous blooms,Mrs.M!

    Tina

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  • Simone80
    Simone80 Member Posts: 988
    edited June 2020

    Beautiful MrsDivine!

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited June 2020

    I just completed a 10-week online course offered free by Yale University called "The Science of Well-Being", the most popular course ever in Yale's history. The subject matter has always interested me, and now I've learned some of the science behind it. Part of the assignment required practicing well-being techniques then writing about it. I passed with flying colors; the class was easier than I thought it would be.

    Because the public pool is closed this summer, dh and I bought an inflatable pool for our backyard. It's cute, with just enough room in it for each of us to float around on our own raft. It reminds me of the ladies on Petticoat Junction taking a dip in the water tower. The whole process of getting the pool up and running has been more fun than I thought it would be.

    Because of the pandemic I learned to embrace online grocery ordering and pickup. Much more freeing thn I thought it would be!

    It's not all smooth sailing. After numerous incidents, it dawned on me how unbalanced my relationships had become with some of my siblings so I've been opting out of extended family involvement. It's like a stock market correction, painful but necessary. There's a lot of pressure to conform to their wishes. Setting firmer boundaries with them is much harder than I thought it would be.

    On a positive note, my son recently landed a lucrative position with a great company as a senior software engineer. He'd been working persistently as an independent contractor the past few years developing his skills and building his portfolio and his diligence paid off big time. I'm so proud of him! He and his girlfriend are also in the process of moving from a small apartment to renting a 3 BR house in a nice residential suburb of Pittsburgh close to great shopping, beautiful parks and some of their friends. It's about an hour's drive for me, can't wait to visit. He's in his mid-20s and says he finally feels like a grown-up because he had to buy a washer and dryer for the new place, hahaha! I'm having a good time shopping online for some housewarming gifts.

    image


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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited June 2020

    Beautiful flowers, Camille and congratulations on completing your course! I believe that learning is what keeps our minds sharp and makes us better people. Your story about your son made me laugh. Nothing says adult like buying major home appliances 😂!

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited June 2020

    Caryn, the class I took discusses how one key to well-being is a “growth mindset" which means, of course, the desire to learn and involves things like persistence, effort, embracing challenge. (That could describe what it's like living with metastatic breast cancer!) I agree with you that learning makes us better people, and it’s been my experience that continued learning and being open to new experiences is a key to coping with this disease.

    It's hard to describe how cheated and sometimes heartbroken I feel with pandemic restrictions but within those confines, I have to find ways to make the best of the situation.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited June 2020

    Camille,

    Growth mindset has been a very popular phrase in education for the last couple of years, and I fully support it. I may be an old lady in years, but I refuse to be an old lady in attitude

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  • Karenfizedbo15
    Karenfizedbo15 Member Posts: 717
    edited June 2020

    You’ll never be an old lady when you work with wee ones Caryn! The one thing I learned teaching, as you well know, is that they keep your mind fresh, if physically exhausted at times and you get a laugh every single day - if not always for the right reasons

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  • Imagine
    Imagine Member Posts: 165
    edited June 2020

    Hello All

    I am just wondering how you deal with you regular primary care doctor,  I had a regular appt with her this evening and I will explain some on how it went, on the drive home I was in tears.   She had me on atorvastin for years because if high cholesterol, it always brought my levels down to normal levels.  Well in Jan 2020 I had to stop taking the atorvastin because of starting the Ibrance and it can cause some serious side effects according to my oncologists office   So I stopped and now my cholesterol is 280, which she said I didn’t have to worry because I will most likely die of breast cancer   She also mentioned I don’t need to worry about ever having another colonoscopy either.  Who it took me by surprised, she made me feel like I was on a banana peel and circling the drain.  I want to have hope, not sure why some doctors are not more delicate with us.   My oncologist feels I could have decades!  


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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited June 2020

    Hello imagine,

    Although I try to keep this thread far away from the medical realm (if that's possible), I think you either need to educate your pcp about you bc or find a new pcp! Although the majority of stage IV patients don't have the rosiest of prognoses, for you not to be treated for other ailments because you will most likely die of bc is unconscionable. I have lived for almost 9 years without progression at stage IV. Can you imagine if my pcp decided not to deal with other illnesses because I'd probably die from bc? I'd be livid! As a matter of fact, I'm livid for you.

    If you really like your pcp, perhaps your mo could speak with him so he would understand that it is not appropriate (unless medically contraindicated) to forgo treating other medical conditions. Or you could find a new pcp. Treating you as if you're half dead already is not acceptable

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited June 2020

    Wow, Imagine, your PCP sounds horribly uninformed. I'm not sure where to start. First, like Exbrnxgrl, I've been living with mbc over 9 years. Secondly, I've been on Pravastatin, a cholesterol medicine, for years. Last year when I was about to start Ibrance, I met in person with the pharmacist who went over all my medicines and said there were none that had any adverse reaction with the Ibrance. So I stayed on the Pravastatin. You need to talk with your oncologist and see if she can confer with a pharmacist to find a cholesterol reducing medicine for you to take. And if it were me, I would find a new PCP. First, her comment that you'll likely die from the bc so why bother taking cholesterol medicin is about the rudest, most heartless things I think a doctor could say to a patient. I'm insulted she said that to you, and I don't know either of you! Secondly, she is grossly misinformed about how some metastatic breast cancer patients continue living with the disease for many years and must not have a clue how Ibrance is helping thousands of women live much longer with this disease. I would have no confidence in her. She sounds very out of touch. I mean, I'm sort of speechless that she'd say something like that to you. Please advocate for yourself, talk to your oncologist and find a cholesterol medicine you can take. Don't listen to that PCP. She may call herself a doctor but she sounds like a quack to me.

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited June 2020

    One more thing you can do, Imagine, is tell your story to the women on the Ibrance thread and get their feedback. One woman, Ciaci, had a pharmacy with her husband for 30 years, and I know she could be of help to you. The women on that thread are very supportive. Here’s the link:

    https://community.breastcancer.org/forum/8/topics/828848?page=747#idx_22384

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