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

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  • Lita57
    Lita57 Member Posts: 2,437
    edited June 2018

    Yep, gotta live while I can....even with bowel incontinence (Depends and adult plastic pants to control those nasty blowouts), foot neuropathy, and left hand doing weird spasms b'cuz of the brain mets.

    Teeth and eyes are bothering me quite a bit, but the dentist and opthamologist say it's all "chemo related," so we can only treat symptoms. We all know that the more "cycles" we have, the worse the side effects get.

    Heading off to Yosemite next week, and if I'm still here, Grand Canyon and Sedona in the fall.

    I know things can change at the drop of a hat. Last year at this time, I was feeling pretty cocky....my Xeloda Tx seemed to be working, but by late June, I started getting the weird eye auras and blind spots; in July getting REALLY dizzy; and by August major headaches and that scary "whooshing" sound in my ears.

    MO ordered an MRI immediately, "And the next thing ya know, ol' Jed's a millionaire. Kinfolk said, 'Hey, Miss Lita, ya got 20 PLUS brain tumors stewin' away in there!' RO said 'WBR is the the thing you oughta do,' so they made me a mask, and it was the best that I could do....swimming pools, movie stars, radiation burns, balding head."

    L


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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited June 2018

    Lita,

    You are fabulous! I admire your get up and go despite what you're dealing with. We should all live by your advice of living while you can!

    My little Ellie is now 3 1/2 months. She is very sweet and seems to be always observing everything going on around her. My other two grandchildren (her brother and cousin, respectively) adore her.


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  • Maire67
    Maire67 Member Posts: 768
    edited June 2018

    just back from hearing my grandchild’s heartbeat after 2500 mile plane ride. Life is good. I never even heard my own children’s heartbeats before they were born never mind ultrasound pictures of that darling little face. Last year ar this time I was planning my demise. Since then I’ve changed my attitude thanks to all of you. I took a cruise in the spring and have 2 more trips planned for the fall. I met a new grandchild and will be here for another one this fall.

    I’m frustrated at times . Some days I hate the pain that keeps me from from doing some things but I hear all of you especially Lita. (You are too funny with the Beverly hillbillies song.). I have my motto printed on a stone by a friend who also has stage 4. “ That day may come but it’s not today “ taken from a sister on this board.
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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited June 2018

    I love hearing all your stories about travels, new relationships, congrats Nel, children and grandchildren and those to come. Going to a Robert Plant concert Monday in Vail and enjoying summer festivities. Planning a trip to Boston this fall for a get together with four of my best girlfriends; can't wait! Hugs and Happy Summer to you all and keep on truckin'!

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited June 2018

    Enjoying my life!image

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited June 2018

    Great photo. It looks like summer is in full swing for you. Keep enjoying!

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited June 2018

    Great pic   ENJOY!!!

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited June 2018

    I feel bad that since Ellie is my third grandchild, I have not posted many pics of her. My dd sent me a great one this morning, so here is my sweet Ellie, who will be four months old on July 1. Hope she puts a smile on your face!

    image

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  • bigbhome
    bigbhome Member Posts: 840
    edited June 2018

    Instant smile maker!!! Thanks for sharing!!

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited June 2018

    Oh my, she is so cute. That is also how I wear my scarves.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited June 2018

    Thank you! My dd said she was going for the Rosie the Riveter look today.

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  • DGHoff
    DGHoff Member Posts: 624
    edited June 2018

    xbrnxgrl - Your little Ellie is a doll! I love the little red head scarf. So cute!

    Just wanted to share more stories of travel and fun. I'm leaving on Friday for a two week road trip/camping/hiking trip with my husband, son, and my son's best buddy. Headed to the Badlands, Black Hills, Yellowstone, Grand Tetons, and Rocky Mountain National Park. I'm so happy to be feeling great and especially looking forward to doing two nights up in the backcountry of the Tetons, carrying all our gear and climbing up about 5 miles to an alpine lake (assuming we don't get snowed out!). When I first found this thread back in January of 2016, I was given so much hope just knowing that life could go on and that I still had so much to look forward to. Thanks to all of your for sharing your stories, pictures, and positive vibes!


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  • Lita57
    Lita57 Member Posts: 2,437
    edited June 2018

    image

    Just got back from Yosemite this afternoon. That's El Capitan behind me.

    L


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  • Tina2
    Tina2 Member Posts: 2,943
    edited June 2018

    Wow, Lita! I have always wanted to see Yosemite.

    Brava!

    Tina

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited June 2018

    I haven't been to Yosemite yet, but want to see it. Lita, so glad to see you still out and about.

    DGHoff, so glad you're feeling great. Sure sounds like a great road trip. Enjoy and share some pics!

    Caryn, love the photo of little Ellie. Instant smile for me. She is just so precious. Lucky you!

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  • Molly316
    Molly316 Member Posts: 10
    edited June 2018

    I was recently diagnosed with Stage 1b ductal invasive breast cancer with cancer cells found in one node grade 2 My Oncotype score is 28. Just yesterday, I learned that I have a lesion on my sternum that is cancer. My doctor said I am now a stage 4. I am confused and very upset. I am going for a second opinion at Northwestern Hospital. Is there anyone that has this diagnosis? I HAVE NOT had a bone biospy yet but have told my doctor that I will only do that if I am sedated.
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  • MuddlingThrough
    MuddlingThrough Member Posts: 726
    edited June 2018

    Hi Molly316, I don't have a sternum met but I have some on ribs and many others on many bones. It will be good to have a second opinion. Keep us posted. My bone mets seldom bother me at all. I was just diagnosed stage iv, de novo, in Jan so it was ALL new and upsetting. You'll find lots of help and support here and there's a thread for bone mets too. I follow several stage iv threads which educate and help me a lot.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited June 2018

    Hi Molly,

    So sorry that you have found yourself in this position. I don't think you need to worry about sedation during a bone biopsy, as they should be able to make you very comfortable with drugs like Versed and a painkiller.

    I am the op on this thread and created it so we could share how many of us have carved out a fairly normal life and good times while living with mbc. I try not to police the thread too much but I would like to keep it on topic. May i suggest that you visit the bone mets thread for support with your current situation? Here's the link:

    https://community.breastcancer.org/forum/8/topics/...

    Wishing you the best !


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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited June 2018

    Lita,

    Fabulous pic of you and El Capitan. So glad you got to visit Yosemite. I confess to not having been there in many years, but did go there when my girls were younger. I will definitely consider a trip there soon.

    Thank you all again for complimenting my little Elie. She is a joy. Hope everyone s having a great weekend !

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  • Micmel
    Micmel Member Posts: 9,450
    edited June 2018

    omg she is absolutely perfect! Lucky grand mother. May her life be filled with joy and happiness always. Thank you for sharing such a cutey pie!! Nice to see you ! ~M~

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited June 2018

    Heading up to Mammoth Lakes for my 54th birthday this weekend. Stage 4 de novo at 47. My birthdays closely coincide with my diagnosis timing. So it's always a double blessing that I'm here for another. Yay me.

    Sunset

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  • Micmel
    Micmel Member Posts: 9,450
    edited June 2018

    beautiful~ wrapping you in big hug. May you have many many more darling. I am also stage 4 de novo. So I understand. Enjoy every second ~M~

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  • MoreShoes
    MoreShoes Member Posts: 322
    edited June 2018

    Hallo ladies,

    I've just diagnosed with mets in the lungs and I'm numb. I don't know where to post and where to find information about experimental treatments.

    Lita, I'm so glad to see your photo at Yosemite, it inspires me.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited June 2018

    Hello MoreShoes,

    Sorry that you have to be here, but you'll find a world of experience and support. Here is a link to a lung mets thread:

    https://community.breastcancer.org/forum/8/topics/...

    The beginning is very difficult, but please allow yourself to grieve and experience the full range of emotions that come with a MBC diagnosis. See a therapist and even consider meds if needed. These are just some of the ways to cope and live the best life you can regardless of how long or short that may be. Wishing you all the best.

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  • bigbhome
    bigbhome Member Posts: 840
    edited June 2018

    Beautiful, Happy, Happy birthday! Another year under your belt! Yay!!! I cherish each birthday now!

    Sooooo jealous you are going to Mammoth lakes. We used to go snow skiing there! It's a beautiful place! Enjoy!!!🎈🎉🎶

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited June 2018

    micmel,

    Thanks for the compliment on my granddaughter. She is a doll! Her two year old brother likes her quite well, but doesn't understand that she's not quite ready to play with him as he wants. He has toy bbq tongs and often pretends to "pick up" her toes and "bar q" them. My dd simply says, "Miles, we do not barbecue our little sister", a sentence she never imagined uttering!

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited June 2018

    Sunset, Happy Birthday! Seven years and seven birthdays since dx; an inspiration to us all! Keep on truckin'.

    Wow, Caryn, Miles is already two? Almost seems like yesterday he was born!

    Just goes to show, "Life does not end with a Stage IV dx." I'm always so appreciative that you started this thread.

    Hugs to all, Barbara

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  • Tina2
    Tina2 Member Posts: 2,943
    edited June 2018

    Tradition! As we've done for many years, later today we're heading to a gathering at a friend's house that fronts on the Chesapeake Bay. The town there sets off an excellent 4th of July fireworks display from a barge in the water. We watch the show from the deck while we chow down on grilled burgers and homemade picnic dishes washed down with appropriate beverages.

    It's great!

    Tina

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited June 2018

    Tina, that sounds like a good old-fashioned 4th of July celebration and a fun time! Enjoy.

    The local shows here have been cancelled due to drought conditions and fires, so we'll have to travel an hour or so to see a show, but okay by me.

    Happy 4th to all those in the USA.

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  • holmes13
    holmes13 Member Posts: 214
    edited July 2018

    caryn- what a beautiful little girl. Have you been able to enjoy your summer? You have been an inspiration since I was dx.i run a preschool of a 130 children and have been doing for 26years. I thought at dx I was going to have to stop something I love so much but I ran into your post and I am still there. Thank you 😊

    tina2- it sounds like a great time!

    bliss58- we have had no problems with moisture in this area. We are having a new school built and at one point I thought they should be building an arc instead.lol! I hope you have fun wherever you go.

    today I am heading to Va beach with my family for a week. This is great because at dx I read sites that said I wouldn't be here for this. But I'm going and I feel really good. I hope everyone has a great 4th if July!

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