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

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Comments

  • Lita57
    Lita57 Member Posts: 2,338
    edited December 2018

    Planning short trips is the way to go. Sadly, even after whole brain rads, I'm not supposed to fly anymore because one of the 20+ brain tumors in my head could hemorrhage if the cabin pressure takes a dive, but that's okay...perfectly happy to drive to places if they're only two days away.

    We're planning to see Hearst Castle and Cambria in the spring. Tahoe in summer. Have to go while I can still see. I'm rapidly losing my eyesight (to be expected, given where the tumors are located), and they can't radiate anymore or it will cause permanent damage and neurological/cognitive deficits. Getting harder to walk, too, but I have one of those rolling walkers so I can sit down when I need to.

    Did a lot of nice trips in 2018, and plan on powering thru 2019 if I still can.

    Praying for us all,

    L


  • exbrnxgrl
    exbrnxgrl Member Posts: 5,252
    edited December 2018

    Lita, have fun at Hearst Castle and Cambria (I really like that town). A very Happy New Year to and everyone on bco

  • henrietta405
    henrietta405 Member Posts: 44
    edited December 2018

    Happy New Year to all and I love thinking of all the new travel and memories we can still make.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited December 2018

    Hi Lita, I do not how you do what you do, especially with failing eyesight and your pain. I foresee you fulfilling all your 2019 trips. I will travel along with you, so keep posting on what you do and where you are this coming year.

    I will do the same. My palliative NP gave me good advice 2 years ago..plan something that will give me a goal. In those days, it was just getting out of bed and brushing my teeth. Now I am planning camping trips, movie days and grandkid overnighters. All within my health limits and ability, but doable.

    Happy New Year to my BCO friends!


  • Maire67
    Maire67 Member Posts: 418
    edited January 2019
    it’s not serendipity that I come on this site and realize I’ve been groaning about nonsense. Wishing you all happy travels this new year. Those 3 beautiful grands just made me smile from ear to ear, exbrnxgirl. Yes it helps to make plans and I am looking forward to a trip to see the Cali baby in the spring and a family shore vacation in Aug. I’ve got to remember to focus on those days. Thanks for the good advice. Love your name exbrnxgirl. Me too.
  • exbrnxgrl
    exbrnxgrl Member Posts: 5,252
    edited January 2019

    As I approach the 7 1/2 mark of living with mbc, I always go back to the fact that I had no grandchildren when I was dx’ed, though older dd found out she was pregnant three days after my dx. I hope everyone, especially those newly dx’ed as stage IV focus on living and living as well as they can despite the dx. BC has not been a picnic but I have been fortunate in many, many ways and so glad that I have tried to live with bc and not put my foot in the grave prematurely. A safe and happy New Years to all

  • Lita57
    Lita57 Member Posts: 2,338
    edited January 2019

    AMEN TO THAT!

    L

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited January 2019

    Enjoying family. Traveling as much as I can to see the world. Planning vacations is sometimes all I feel that I have to look forward to. gonna be a long time before my kids marry and have kids. I may not see that. BUT, I did see the Sydney Opera House...so there's that. Happy and HEALTHY as possible New Year to all my BCO sisters.

    Beautiful Sunset


    image

  • Utopria
    Utopria Member Posts: 182
    edited January 2019

    gorgeous pictures ladies!! Happy New Year to All

    Sunset, I'm in the same predicament, kids are relatively young and long way from getting married and kids...

    Travel seems to be perk me up and make me forget about this horrible disease for a little while at least...

    Making plans in 2019 as we speak! Lita I love your attitude, you are amazing

    We were in Puerto Rico for the holidays here is a pic in San Juan image

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,252
    edited January 2019

    I love the vacation pics!

    Beautiful sunset,

    I was in Sydney at about this time a few years ago. Did you climb the Harbour Bridge? I did and it was one of the most memorable experiences of my life. Australia is lovely and I was tempted to never leave Tasmania.i could easily live in Hobart.

    Keep on having good times

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited January 2019

    exbrnxgrl,

    I'm afraid of heights, but we did get a private backstage tour of the opera house that was pretty magical. Today we are up north near Port Douglas..have a full day trip to the Daintree Rainforest planned.

    I always love reading this thread.

    Happy New Year to you !

    Sunset

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,252
    edited January 2019

    Sounds wonderful! I am not crazy about heights either but I wanted to challenge myself. I was already stage IV, so if I could do it, I felt like it would be a personal triumph. You are attached to a steel cable during the climb so the worst that could happenwould be that you'd dangle over the Harbour by the cable 😜.

    Enjoy every minute and you get extra credit if you try Vegemite!

  • bright55
    bright55 Member Posts: 146
    edited January 2019

    image Nsw australia late november

    New year greetings one and all. Thankyou for posting the glorious pics and news ..yes we are fortunate.

    ..am just north of sydney at the beach..we are blessed with very sunny weather this break so lots of ocean swims. Family has had an explosion of grandies with twin boys and girl in august and another boy due any day.all parents late 30s early 40s

    image

    progress ..i am nearly 3 years still on mono letrazole therapy some joint paint but minor.

    I love trees so have planted my own mini forest on the low gound close to the small creek.

    First . pic shows flowering pompom, pines,jacaranda, have numerous potted trees including frangapani and Daintree pine

    Second pic today is OUR FAVOURITE A 10 YEAR OLD EXOTIC TULIP TREE it will grow to be a monster but a baby at present

    All the best

    Bright in hope

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,252
    edited January 2019

    Bright in hope,

    Thank you for your beautiful pics. I was absolutely charmed by the beauty of Australia and New Zealand. Not only beautiful countries but really lovely people as well. I do think part of the reason I wanted to stay in Hobart is that we were there during the Taste of Tasmania food festival. I love food festivals and this was one of the best I've ever attended. Mmmmm... delicious licorice ice cream! Happy New Year and congratulations on the grandchildren.

    PS: I had never seen a jacaranda tree until I moved to the San Francisco Bay Area, 30 years ago. Now I look forward to them blooming each year in about mid-June.

  • Nel
    Nel Member Posts: 597
    edited January 2019

    Healthy New Year to All

    It is all about the memories, with family and friends.  Neither of my kids, 20 and 25,are even close to getting married and having children (and thank goodness - neither is even close to being ready LOL)  I hold out hope that I am here when the time comes.  In the interim - I make some plans, have some laughs and enjoy the moments - the good the bad and the ugly. Within a 48 hour period the week before Christmas - my son had his car repossed and my daughter totaled her car. Life lessons was my frequent refrain.  My son has his car back and my daughter has purchased a new car.  Just gotta love it!   

     Leaving for the Azores for a week in February.  Going with a friend, we have agreed a laid back vacation, we both have health issues, but we will laugh and drink good red wine.  This will be the first vacation without my kids, since I had kids, 25+ years.  Long awaited and if I do say so myself - well deserved.

    Be well

    Nel

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited January 2019

    Bucket List -

    image


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited January 2019

    That is the coolest thing ever, Sunset! How did this come about? What did his/her fur feel like? How did he/she act being held?

  • Amica
    Amica Member Posts: 237
    edited January 2019

    Abeautifulsunset

    OMG! That is the cutest ever, and he looks like he's grinning ! lol

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited January 2019

    A special zoo in Queensland. Queensland is currently the only state in Australia where you can still legally hold a koala. He was soooo soft. I was surprised. So are kangaroos. And kangaroos and wallabies are super sweet, like curious little puppies, at least the domesticated ones that are used to people feeding them. You can't get near the wild ones. Look at this kanga!

    image


  • Andi67
    Andi67 Member Posts: 314
    edited January 2019

    I love all the pictures! Bright in Hope, amazing trees! I'd love to do that in my Colorado backyard, but not sure they'd do as well. Great to see the pictures from everyone else!  Those grandchildren are getting SO big.... I feel like I remember when they were born. We have been traveling over the holidays as well. Like others here - we have kids in their early 20's who are years away from marriage and babies, and my boys are telling me that's never going to happen. (really hoping they change their minds.) We just got back from 10 days in Argentina.... four kids plus a girlfriend. (at least one son has a girlfriend... that's positive, right?) Great trip and wonderful memories.... spent some time at an Estancia and the kids all learned to play polo. I stuck to plain old horse back riding. We took a ferry over to Colonia, Uruguay and spent a day there as well. Beautiful, charming little city with cobblestone streets. 

    Here's a picture of our New Years Eve boat trip on the Tigre Delta, which is just outside of Buenos Aires. Girlfriend on far left, son, son, son, me, daughter and my dear husband who puts up with my insistence that we take five college students to Argentina. He thinks I am crazy. Happy New Year, and cheers go another year filled with family, road trips, plane trips, adventure, nature.... and as little cancer SE's and issues as possible. (like, none.) 

    image

  • Nel
    Nel Member Posts: 597
    edited January 2019

    I love that  kids are still willing to travel with us.  I have taken a few vacations with my kids since divorce and we are planning some additional  Of course it helps if I pick up part of the tab LOL   But they are the best kind of memories

    Nel

  • Lita57
    Lita57 Member Posts: 2,338
    edited January 2019

    I was watching "The Hot Ones," a streaming show about celebrities eating hot wings with various hot sauces, going from mildly hot up to major fire butt crisis (ten wings in all) while being interviewed by the host, Sean Evans. Gordon Ramsay really wimped out during his segment, but the other guys (Gabriel Iglesias – comedian, Action Bronson, and Guy Fieri) did okay. Eddie Huang from "Fresh off the Boat," practically crapped his pants :o because he suffers from irritable bowel syndrome - kudos to him for just GOING on the show.

    Anyway, Neil DeGrasse Tyson was on (he did well, too), and the host asked him one last question at the very end of the show. Paraphrasing, "What's the most important thing to remember…"

    DeGrasse Tyson answered, "Humans are basically made of these four top atoms: hydrogen, oxygen, carbon, and nitrogen. The universe's top four chemically active atoms are: hydrogen, oxygen, carbon, and nitrogen."

    Sean Evans said, "So, we ARE the universe."

    DeGrasse Tyson responded, "We live in the universe, and the universe lives in us."

    Isn't that cool how the Father created us all? When we 'transition,' and go back to the Father, we will also go back to the universe, in a manner of speaking. There is a DIVINE plan to all of this, even though we often times don't see it.

    I might look into getting DeGrasse Tyson's book, "Astrophysics for People in a Hurry."

    L


  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited January 2019

    my son, the physicist student, is quick to point out to me that what we are made of never disappears, so we are always here in some form, even when our human consciousness is not. We will always be here. Iguess that's suppose to make me feel better. Lol.

  • tina2
    tina2 Member Posts: 758
    edited January 2019

    Ah, Lita, food for thought!

    I'm going to chime in with an appropriate song lyric from Joni Mitchell:

    "We are stardust, we are golden
    We are billion year old carbon
    And we've got to get ourselves back to the garden."

  • nowaldron
    nowaldron Member Posts: 40
    edited January 2019

    Lita,

    You are so brave! I guess we are all brave, really. I am coming up on my three year anniversary of Stage IV de novo diagnosis. I am getting scans in February so am hoping for continued good news. 

    I am planning to travel out west this summer - Montana, Wyoming - as I have never been there. I am a Boston girl :-) I want to just put my dog in the car and drive, but my sisters are having none of it! It's great to have them, but they really don't understand what I live with every day. I am a teacher and want to enjoy my summers while I can -- no guarantees, as we know. 

    Oh well, as Tiny Tim said, bless us everyone! 

    Go in good health,

    Nancy

  • KatyK
    KatyK Member Posts: 206
    edited January 2019

    Nancy- I say go for it on your trip out west. You are right enjoy the moments and summers you have! MT and WY are incredible places to explore. Go have your adventure! I get February scans too, I’m feeling good so hope for good news

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,252
    edited January 2019

    Nancy,

    I have never felt particularly brave. I just keep putting one foot in front of the other and deal with things as they come I’m a teacher too!

  • chloesmomandcgswife
    chloesmomandcgswife Member Posts: 7
    edited February 2019

    I had stage IIIB cancer, went into remission back in 2015. My doctor told me it has spread to my bones and we are in the process of testing. (Bones scans and such) I am so sad and scared at this stage IV diagnosis and could use some encouragement. I am about to get married for the first time and I have a sixteen year old daughter I want to see grow into an adult. In need of encouragement and support. I am thirty eight years old and terrified.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,252
    edited February 2019

    Hi chloesmomandcgswife,

    It is very normal to be both sad and scared when you receive a mets dx. Try to not project too far ahead, which is hard, but a good skill to learn. I have a single bone met and am going on 7 1/2 years of NED. There are many possibilities for treatment. You might want to add your dx details to your signature line so others with similar diagnoses can help. This is kind of a “feel good" thread to highlight how we live and enjoy many things in life despite bc. I hope it encourages you too. For treatment discussions you might want to check out the bone mets thread:

    https://community.breastcancer.org/forum/8/topics/789492?page=730#idx_21871

    Congratulations on your upcoming wedding and there is a very good chance that you will be there for your daughter for many years.

  • 42young
    42young Member Posts: 126
    edited February 2019

    I was just diagnosed with bone mets De Novo too. I'm only 42 with 13 years old son. Please give me hope!!