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

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  • nkb
    nkb Member Posts: 1,561
    edited March 2023
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    Exbrnxgirl- Bestbird makes wonderful points. I worry about your weight loss also.

    We adopted a baby and she was hard to spend the day with- we read the spirited child, the difficult child etc- none of them fit. then a teacher suggested ADHD- we read about that and it fit so much better- one of the best parts of this discovery is all the positives that go along with this diagnosis- and of course the ability to plan so that she had less judgement by others.

    Hugs

  • spookiesmom
    spookiesmom Member Posts: 8,178
    edited March 2023
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    GS#1 is on the spectrum. He’s had an IEP throughout school. He also stutters. He could be very difficult when he was younger, but has had excellent help throughout his schooling. He graduates in may.

    As for me, since DH died 2 years ago this month, I feel free. I don’t miss him. I do what I want, when I want, how I want. Or not. Nobody thinks I’m weird, and phooey on them if they do. Was it Sinatra sang I gotta be me? Yep, time to be you, for you.

  • sunnidays
    sunnidays Member Posts: 161
    edited March 2023
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    exbrnxgrl, think of all the people who you have helped with this thread, its a wonderful thing for someone newly diagnosed to read.

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

    I am sure you have helped thousands.

  • divinemrsm
    divinemrsm Member Posts: 6,191
    edited March 2023
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    Hello to all. My reason for popping in this morning is to share the following message from the Mods that has been posted on the forum. I want to make sure as many people see it as possible. Please spread the word.


    Important update:

    We're very close to the launch of our new community forums! The conversations that have been shared here over the past 20 years will be waiting for you in the new forums.

    During this migration, which will begin on March 12 and end approximately on March 23, all newly created threads and posts will need to be moved by the mods to the new forum through a manual copy and paste process.

    Unfortunately, we can't migrate private messages you send and the threads you favorite during the migration period. Please copy and paste any private messages you'd like to save for yourself in a separate document, and write down any favorites you want to bookmark in the new forums.

    We thank you for continuing to be patient with us through this process. We're doing our best to make sure all conversations continue and pick back up where you left off on the new forums very soon!

    --The Breastcancer.org Community Moderators

    March 9, 2023

  • dghoff
    dghoff Member Posts: 236
    edited March 2023
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    exbrnxgrl - sunnidays hit the nail on the head with her comment about how many people you have helped with this thread. I am one of those people, and this thread, and the hope it represented, gave me the confidence to continue to offer hope to others through peer mentorship. I just wanted to let you know that you have made a difference and I appreciate you.

  • gailmary
    gailmary Member Posts: 444
    edited March 2023
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    Caryn, I imagine you are exhausted. You've led a good life and successful considering the Autism. My daughter is higher functioning than all her friends and she still struggles at 46 yrs to pull off "normal". Yes, she just wants to be herself with ADHD besides ASD. Can't do it for long. Overwhelmed frequently. Yes exhausting. Don't be to hard on yourself. I never would have guessed from all your posts. Retirement changes life alot. That will be a good time to remake Caryn.

    GAILMARY

  • chicagoan
    chicagoan Member Posts: 1,004
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    This thread has been kind of quiet lately so I thought I'll give an update because it was very important for me to see that life does not end with a stage 4 diagnosis when I was new to this board.

    My life has been a bit of a whirlwind lately. I started a part-time job in April, after not working for 6 1/2 years. Now I am off to the ballpark whenever my team is in town and also working concerts. It's a fun job but physically demanding. It's helping me to get stronger-I now can stand for 7 1/2 hours! I found I like working again and being part of a team. Now I may be overdoing it but I have accepted another part-time job. It's only a six month contract but I will be a bridge pastor helping a church in transition to discern its future. I'm excited about this work too but worried I may be taking on too much. We'll see. I can always quit either job if necessary.

    I've been feeling good and bored with just playing pickleball and volunteering so it feels nice to work for a paycheck again and neither position will be as demanding or stressful as my previous full-time job. When I resigned for health reasons 6 1/2 years ago, I never thought I would work again. I didn't think I would be alive today so I am grateful simply to be alive and able to contribute in some small ways to the world.

    I've been having fun too-I went to James Taylor on Saturday night and will go to Eddie Palmieri tonight. I don't want to fall back into my old workaholic ways. For many years I always put work first and will have to be careful not to fall back into that.

    Hope others will give their updates. Thanks to exbrnxgrl for starting this thread.

  • chicagoan
    chicagoan Member Posts: 1,004
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  • sunshine99
    sunshine99 Member Posts: 2,687
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    chicagoan, I don't know how you do it! I'm quite impressed.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,035
    edited June 2023
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    Wow, Chicagoan, you are indeed active!
    Summer is here so no subbing for me. Feeling more old and creaky and 12 years on an AI is not helping at all with that but I’m still NEAD. Feeling out of touch with current bc tests/ treatments, etc. due to this long period of stability on a tx that virtually no stage IV would likely follow today. Life is very weird .
    When I started this thread there were precious few of us but I am thrilled to see more living better and longer. Happy to see that folks can find some normalcy even while living with bc. Next steps? A real cure, not just outliers who do well for unknown reasons.

  • chicagoan
    chicagoan Member Posts: 1,004
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    A real cure-that's what I want to for everyone. I feel optimistic as they test cancer vaccines. Maybe we'll be alive to see it.

  • divinemrsm
    divinemrsm Member Posts: 6,191
    edited June 2023
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    Chicagoan, thanks for rekindling this thread with your update! I’ve been wanting to post here for awhile. It’s wonderful to hear you’re working again and liking the interaction of it. It’s inspiring! Pickleball has become immensely popular here, too, but sadly I’m not physically able to do it. In my younger days it woulda been right up my alley.

    I continue weekly visits to the cemetery to take headstone photos and posting them on the Ancestry-owned website, Find A Grave. It’s a bit addicting. This spring dh and I drove about 2 hours south down West Virginia to visit several cemeteries where he has a number of ancestors buried. It was a beautiful drive and the cemeteries were the small kinds of graveyards you see here and there tucked on a backwoods country road. It was fascinating. We went to an Onion Festival while we were there, had root-beer floats and visited one of dh’s second cousins.

    Dh retired this spring. It a process of adjustment for me. At least with summertime there is more to keep him active and not underfoot all the time. But he earned the retirement so I am happy for him. He bought a new fishing boat so that’s one thing that gets him out.

    I bought a new sofa for my living room which will finally be delivered next week. My old sofa will go into the large spare room that used to be a hangout for ds and his friends. I’ll get rid of the sectional sofa that’s in there now. It’s been years since ds and his pals used the room and it was always comfortable, but it’s only now I’m rearranging it for me. All my married life I created livable spaces for everyone else. It’s still challenging to put myself first.  

    Life still has its ups and downs. My stepson is going through some difficult health problems that came out of the blue. Plus I have scans coming up in July and my bloodwork’s is a bit off, so I am sort of bracing myself for whatever the scans show. I manage to not think too much about it. I hear ya, caryn, about feeling older and creaky. I’m definitely there with not the stamina I once had. But I’m still finding things to enjoy.

  • chicagoan
    chicagoan Member Posts: 1,004
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    Divine-What a wonderful hobby. I love walking around cemeteries and looking at gravestones. I didn't know that people like you took the photos for Find a Grave. It's been helpful when cousins and I have searched for relatives, so thank you on behalf of all your colleagues.

    How great that you are finally decorating a room for your own pleasure. Hope it turns out to be a peaceful haven.

    Must be hard to see your stepson deal with health issues. I hear you on the scans-it's like we can relax for a while and then begin holding our breath to see what comes next. Hope the bloodwork is a fluke and that you stay stable until we get our cure.

  • divinemrsm
    divinemrsm Member Posts: 6,191
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    chicagoan, I came across Find a Grave while doing genealogy and found it so helpful that I wanted to help out. The site is comprised of volunteers around the world, anyone can do it. I learned the name for a person who’s interested in cemeteries and headstones is called a taphophile. The name also applies to those who have an interest in funerals, which is not me so much except that the trend for people to no longer have any kind of funeral service when they pass saddens me. It doesn’t have to be the drawn-out three day event it used to be, but even a small commemoration is meaningful.

    Anyway, I love taking the photos and have gotten better at it. I try to show off the beauty of both the grave marker and the cemetery surroundings when possible. Many headstones themselves have such artistic beauty. Some graves have lovely planted flowers and angel figurines. Some are adorned further with pinwheels, decorative flags, wind chimes. I’ve seen small tokens at gravesites like a coins, matchbox cars, small bottles of root beer, a baseball bat, golf balls and more. It’s touching. Through the hobby I’m also learning how common death by pneumonia and tuberculosis was in the early 1900s as well as infant and childhood death, and I am aghast to find out how prevalent it was for women to die during or shortly after childbirth. Simply tragic.

    Getting back to dh’s retirement, I wanted to mention that I am thankful to actually be here for it. I was diagnosed with mbc in my early 50s and had no clue what the future held.

  • divinemrsm
    divinemrsm Member Posts: 6,191
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    Another thing I wanted to share is how floriferous my backyard currently is! I’ve been a flower gardener for over 30 years. My backyard is a small rectangle but I have the borders crammed with perennials.

  • chicagoan
    chicagoan Member Posts: 1,004
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    What a beautiful yard!

    As a pastor, I find officiating at funerals deeply meaningful. It's sometimes hard when beloved parishioners have died but I find it such an honor to honor their time on earth. Each life is so precious-I guess I get that same feeling wandering around cemeteries.

  • sunshine99
    sunshine99 Member Posts: 2,687
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    divine, your yard is beautiful. It must give you so much pleasure just to look at it. Thank you for sharing it with us.

    chicagoan, how did I miss that you are a pastor? Bless you for that. (Almost typed "poster" but caught it just in time. LOL)

  • chicagoan
    chicagoan Member Posts: 1,004
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    Sunshine-Guess I am both a pastor and a poster 😉. I resigned from my pastorate a few months after being diagnosed because I was too sick to work. In the past 3 or 4 years, I resumed pastoral work as a supply preacher and volunteer helping churches in transition. I will be a bridge pastor now for about 6 months-this is the first time I will be "official" again. I am excited and nervous.

  • nkb
    nkb Member Posts: 1,561
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    Love the garden Devine- the orange flowers are fabulous! how cheerful- we had a lot of rain in california and my garden loved it and looks good!

    I am glad so many are doing well in treatment. it is hard at times- especially if you have pain or depression or anxiety- haven't felt carefree in a while- I may skip looking at my TMs this month! so glad I got to raise my kids without all this mess.

    Devine- my DH retired before me and the transition was rough at first- he joined a men's book club (invite from my GYN) a cycling group and a hiking group. also washed one window a day in our house. begged me to retire also- cancer took care of that.

    Lovely day here- I hope there also.

  • spookiesmom
    spookiesmom Member Posts: 8,178
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    Ive been stage 4 since the first reoccurrence in 2019. Been in remission all this time. Had scan late January, nothing lit up. Labs had always been stable, until May. They’re on the move, he called it concerning. Another scan. Whee? I’m a Christmas tree? 4-5 spots in spine and pelvis.
    So when he told me, it was like he was talking about someone else. Then he said the tx plan, falosadex, ibrance, and zometa . Still didn’t sink in.
    That was last Monday. Last Friday I made the painful decision to send one of my dogs to the Bridge.
    I went for the shots, terrified. Kept telling myself I didn’t have to be brave, I just had to show up. It worked. Then I stared at the ibrance before I took it. It became real.

    Now I’m flirting with dark places. Is it going to work. That has me upset, this never happened before.
    Thanks all, I know you understand.

    RIP Kris

  • sunshine99
    sunshine99 Member Posts: 2,687
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    Oh, Spookiesmom, I'm so sorry for all you're dealing with. I'm sorry you've had progression, and sorry sweet Kris crossed the Rainbow Bridge.

    (((hugs)))

    Carol

  • sf-cakes
    sf-cakes Member Posts: 572
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    Spookiesmom, sending you love, I remember starting at my first pack of Ibrance, too. I'm really hoping it will get you back to stable. I love that photo of your sweet dog.

    Divine, your garden is gorgeous, and I love that word floriferous! My backyard had to be partly torn up and I'm hoping to get it back to a more floriferous state very soon.

    Working one more day tomorrow and then likely never again, taking a six month leave to see what that feels like, and then very probably onto long term disability. Going to see Madame Butterfly at the opera this weekend, and am booking a trip to London to see several theater shows in the fall. Got to do it while I can!!

  • irishlove
    irishlove Member Posts: 527
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    @spookiesmom I'm so sorry for the loss of Kris. What a sweet baby. It's awful to hear about your progression after a nice remission. I can tell you I'm on the same tx plan and I pray over Ibrance each time I take it. And guess what?? It cut my tumors load tremendously in just 3 months. I also like the thought that it crosses the blood brain barrier as an added precaution. Those dark places are scary. We have all been there and return there often. I just know you've got this!

    @sf-cakes Hoping your last day is a good day and you have a long, lovely retirement. Enjoy the opera, I'm envious of those wonderful trips you have planned.

    @divinemrsm Wow you sure do have a beautiful garden. Love the cone flowers. They were wild in the mountains of N.C. as were Daffodils, Mt. Laurel and Rhododendron. I was actually named after Mt. Laurel. Missing my beautiful gardens. I had the best Lilac trees and bushes, Iris, Sweet William, Azalea, Forsythia, Peonies, Honeysuckle, Catawba Grape Vine, Rose of Sharon (?) and an Abraham Lincoln Rose bush. Lost the Clematias and Crepe Myrtle to a severe extended winter one year. We had snow on April 30th that year.

  • dghoff
    dghoff Member Posts: 236
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    Spookiesmom- so sorry about the loss of your pet and your progression. Hope the meds get you right back into remission.

    Divinemsm - beautiful yard! I did nothing in my garden all year until this last weekend I finally put in a couple of new plants, but just haven't been around enough to do much. Which I guess is why I am posting this.

    I haven't posted on this thread much but check in every now and again. I wanted to share some positives. I'm 7 1/2 years post dx and just last week I finished a 7 day wilderness canoe trip in the Boundary Waters in northern MN. Did a loop of about 50 miles, portaging and paddling every day. I'm so thrilled that I am still strong enough to do trips like that. It's such a beautiful place, and even though it is physically challenging, it is so worth the effort for scenes like this.

  • divinemrsm
    divinemrsm Member Posts: 6,191
    edited June 2023
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    Spookie, my heart goes out to you. First, I am so sorry that you had to say goodbye for now to one of your precious dogs. I am not sure there are words to describe the immense love we have for our pets or the heartbreak we feel when difficult decisions have to be made. I still miss my cat, Peach, a regal presence if there ever was one, and he’s been gone three years.

    I’m also sorry to hear about the progression. I have been in your shoes so I have an idea what it feels like. The first year after I was diagnosed with mbc, I went through all the big treatments then started taking an aromatase inhibitor which kept me stable for about seven years. Then completely out of the blue I had progression. It knocked me for a loop, shook up my world. Like I was in a freefall. It does get better, and you will adjust, but there’s still that transitional period you go through. Take some deep breaths and hang in there. Sending my thoughts and many hugs your way.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,035
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    spookiesmom,

    I am thinking of you. Sorry to hear of your progression. I hope things settle down once you start the new tx plan. As to Kris, my heart breaks for you. I have had dogs almost my whole life and losing one never gets easier 💗

    Divine, I love your garden. The part I like best (besides great colors!) ? It doesn’t look too perfect and manicured. I really like the more natural look.

  • divinemrsm
    divinemrsm Member Posts: 6,191
    edited June 2023
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    irishlove, I love that you were named after the beautiful Mt. Laurel! I, too, was named after a flower as I was born in May, i.e., “Mayflower”. Had I been born in April on my due date, I’d have been a Rebecca. Are you no longer in NC?

    dghoff, wow, just wow! What a spectacular photo! You are so right, all your effort was worth it to have a front row seat to that view! Congratulations on the successful seven day canoe trip, very impressive!

    sfcakes, wishing you all the best as you take leave from work. It sounds like you have some wonderful plans, enjoy Madame Butterfly and the London trip! Yes, do it while you can!

    Caryn and all, thanks for the compliments on my flowers! I do feel it’s the artistic side of me that celebrates the imperfect beauty of the blooms!

  • chicagoan
    chicagoan Member Posts: 1,004
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    Spookiesmom-So sorry about the loss of your beloved animal friend and now having to deal with progression on top of that. Hopefully the next treatment will work well for you.

    DGHoff-I am so impressed that you were able to do that trip-including portages! Boundary Waters was on my bucket list so I went about 5 years ago. I was with Road Scholar so we stayed in cabins and just did day paddles-I don't think I could do the portages but how marvelous you were able to really be out in the wilderness. Such a beautiful, unspoiled area!

  • irishlove
    irishlove Member Posts: 527
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    @divinemrsm We moved in 2019 from Valle Crucis, NC (just outside of Boone) to FLA. Our DD and DGD lived here and this is our only grandchild. It turned out that the girls moved in with us last year. The parents are working on getting the family back together soon. I'll miss having a 9 yr old around. My garden here in FLA is a bit minimalist. I do have gardenias (I carried them in my wedding 44 years ago come July 4th), bouganvilla, hibiscus, two gorgeous crepe myrtle trees, honeysuckle and a bottle brush tree the bees love. Other plants are potted, including a left over pointsetta, daisies, a lilac called Miss Kim that is meant for this zone, 9, Grammy's clover (about 30 yrs. old) and a Christmas cactus (that's about 20 yrs. old). Miss Kim has yet to bloom, so I'm not convinced the nursery was telling the truth. lol

  • divinemrsm
    divinemrsm Member Posts: 6,191
    edited July 2023
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    irishlove, Happy upcoming 44th Anniversary on the 4th!!!! That is a whopping many years together! Congratulations! I love gardenias, btw, tho they do not grow outdoors here in Ohio. I love crepe myrtle but they don’t grow in my neck of the woods, either. I imagine Florida flowers are different than those in NC but they still all sound lovely, just the same.

    Ds will be in for the weekend. We’ll grill some shrimp and veggies. I cut up a watermelon and bought a cherry pie from Krogers. The small town were we live will set off fireworks tonight. We’re able to watch them from our backyard.

    Tomorrow is a very large extended family picnic at my sister’s. These get-togethers are much better since I began establishing firmer boundaries with them several years ago. I’ve learned sooo much through the process. It amazes me what I used to put up with! Anyway, now I see them less but when we do get together I enjoy it more.

    Normally our two grandkids would be coming to visit us now for a week, but things are all up in the air with my stepson’s serious health issues. They live 3 hours away, so we never really know all that goes on. Dh and I are hoping the grandkids can make it in for at least a few days soon.

    Wishing all in the U.S. a good 4th!