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

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  • amel_83
    amel_83 Member Posts: 169
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    I'm at the sea, in a small town on the coast of Italy, enjoying my days on capecitabine before I may have to change therapy in 2 weeks, due to a possibile relapse in the bones...but hopefully is just inflamation, finger cross.

    But in the meanwhile I enjoy a little bit of sea, try not to think about too much!

    I'm glad everything seem to be ok here, and people are having nice moments!

    I remember I was downtown San Francisco when the Giants won few year ago and everything turned crazy, I didn't know where to hide!! My husband is from San Francisco, so we used to live there before our 3 year old kid born. I love USA! And I'm up for everything SF bay related, I'm just in love. Unfortunately SF was too expansive for life anymore...so now I'm back in Italy, I live in the Alps and I like it here too!

    Now is carnival there is going to be a small parade, I'm going to bring my kid to watch the masks and costumes.

    Best wishes everyone!

  • spookiesmom
    spookiesmom Member Posts: 8,178
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    I’ll probably just go on YouTube after the game to watch the commercials I’ve already seen the Budweiser commercial they’re always so good I don’t care about football we got the Tampa Bay Buccaneers here couple years ago I think they were in the playoffs or the Super Bowl and everybody around here was crazy. I was glad when it was over, I’m not a sports fan.

  • sunshine99
    sunshine99 Member Posts: 2,687
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    eleanora, I love your daily schedule. I enjoy knitting, too, but lately haven't had the energy to do much of that.

    spookiesmom, my DH likes to watch the games that way. He can watch a whole game in about 15 minutes. I don't know if we'll watch the game. We don't have cable TV, but we do have several options for watching network TV.

    Ever since the Traitors (I mean, Chargers) moved to Los Angeles, we don't have a team to root for. We joke about become Raiders fans.

    I hope everyone has a decent weekend.

    Carol

  • claireinaz
    claireinaz Member Posts: 691
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    Amil83.. I take vit C, lipotropic complex for liver support, vit B12 for immune system, theanine for calm and also seems to suppress tumor growth, a probiotic capsule , vit k2 to help vit d work, vit d, and tums for calcium.

    I’ve been eating full fat brown cow yogurt: yum. Plus I make bread and love toast, it’s my favorite food! So I slather it with peanut butter, organic and unsalted unsweetened, but with lots of butter. I have Ménière’s disease, and for 3 years I was on a very low sodium diet. Try to gain weight on that! I haven’t had an attack in 2 years and think my weight is more important than anything so I just eat what I want… cheese, fruit, nuts. Problem is I’ve eaten clean and fresh low calorie for so long, I don’t know how to bulk it up! I’m leaning even though I’d rather simply eat fruit the rest of my life haha.

    My BMI is low normal 18.9 but still normal. I went from a size 6 to a 4. I’ve been a 4 before, and weighed this much during chemo, but I gained weight after the last infusion. Don’t know what is going to happen here. I just ate 2 servings of ice cream last night, but I also have to eat carefully to manage IBS.

    Not much for football, at least the American kind. But being in Arizona I have to support the West, so go 49rs!

    We are going to London in April for almost a week, first time! I had a crush on Peter Pan when I was little so I hope to see him flying around the Big Ben Clock Tower… at least once! 😉

  • lexierose
    lexierose Member Posts: 12
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    I want to start living again but I keep blaming myself because I should have gone sooner and am mad my dad or anyone in family never spoke to me about it. It just wasn’t supposed to be this way I should’ve loved myself more

  • chicagoan
    chicagoan Member Posts: 1,005
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    lexlerose-It is never too late to start loving yourself. Love yourself today. Do something that feels nurturing for yourself-whether it is taking yourself out somewhere you want to go, or making a nice bath with candles, fixing a delicious meal, or reading an escapist book. You matter and your life is not over. If you want to delve deeper into this, I recommend the book "Cancer As a Turning Point" by Lawrence Le Shan, Ph.D. I found it to be a very helpful resource to begin the shock of living with a terminal diagnosis.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,035
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    Let’s keep living even if it’s not exactly the same as it once was!

    Claire, glad you ate the ice cream. For those of us struggling to keep weight on, getting those calories is important. Do I wish those calories were loaded with the best nutrients? Yes, but there comes a point when you just need the calories to prevent further weight loss. Very exciting to hear about your trip to London. There are so many wonderful things to do and see there and something great to look forward to.

    Whether it’s sports, travel or just a relaxing day at home, life goes on and we try our best to find ways to enjoy it even at stage IV 😊. As for me, laundry and other sundry chores will take up my time. Not exciting, not glamorous, but normal and I will happily take that!

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,035
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    lexierose,

    Although unsure of what you are posting about, your post is very cryptic, may I suggest that you create a new thread regarding your situation or find a compatible thread below. This thread is about the everyday normal things that bring us happiness. I am sorry that you are hurting and hope you find the resources you need. Take care

  • aprilgirl1
    aprilgirl1 Member Posts: 784
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    Hi All , we are hosting a small Super Bowl party as my husband is a native Californian and we grew up in the Bay Area . He will be wearing his Joe Montana jersey ;) I sure like Brock Purdy their quarterback. The hype in the Bay Area is real and can get scary . My best friend from high school lives in the Mission District in SF and it gets very intense down there on game days :/

    On the topic of living as well as we can despite stage IV, we are headed to Palm Springs for my 60th birthday on April Fool's Day to celebrate with family . At the end of April I'm headed to Maui with girlfriends. I'm looking forward to both of these trips :)

    I am looking forward to my scans mid march to give me the green light to enjoy my trips in April .

    I hope you all have a great weekend .

    @spookiesmom i love the commercials, too .

    @claireinaz London will be such a wonderful trip

    @chicagoan beautifully written sentiments that it's never too late to love ourselves . Amen

    @lexierose , Chicagoan and Exbrnxgrl have really good suggestions . You are worthy of love . Take it one day at a time !

  • moderators
    moderators Posts: 8,280
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    It's easy to get sucked into the what if scenarios and wish that things could have been different, @lexierose. It's not your fault though that you got metastatic breast cancer. There are so many factors that can lead to it, and so much of it is out of our control and random. Even if one were to have unlimited resources, with all of the knowledge and technology we possess as a society right now… a doctor would not be able to determine or tell someone what were the factors that led to them developing a cancer.

    Like @chicagoan, @exbrnxgrl and @aprilgirl1 have all said: it's possible to experience joy and a fulfilling life in spite of the diagnosis, though it's not without its challenges and it is certainly different than life pre-diagnosis.

    We do have free weekly meet-ups over Zoom if you wanted additional emotional support, @lexierose. Many, including @aprilgirl1, attend them and find them to be meaningful sources of connection and understanding. You can register for them here, and come as frequently or as infrequently as you want:

  • gailmary
    gailmary Member Posts: 444
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    EXBRNXGRL wrote Let’s keep living even if it’s not exactly the same as it once was!... and

    ...THIS thread is about the everyday normal things that bring us happiness.

    Hi everyone I follow along here too. I just wanted to say I think it's a great topic to have when I remember how I felt when first dx 7 yrs ago. With the lack of estrogen the anxiety and depression set in pretty hard. I learned to count my blessings daily and there are many. It's a depressing world these days but I have much to be happy about.

    I still quilt quite a bit and head up a group of senior ladies making comfort quilts for donation. Often for sick or abused kids.

    I also enjoy working in our 11 acre woodland. Clearing invasive species. It's my happy place. We haven't worked as much as I'd like to cause dh is feeling every bit of his 76 years. This time of year we often clear fallen trees and build brush piles to burn when there is snow. Little snow this year. Great for working out there with no snow if he is up to it.

    We probably won't watch the game cause the packers aren't playing. I have a hard time following the ball. But after 65 years of hearing the game on Sundays I find it a comfort to hear as I sew in the other room.

    Except for my health care being my new hobby, life has changed little for me.

    GAIL

  • amel_83
    amel_83 Member Posts: 169
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    @claireinaz

    I used to love Brown Con yogurt, I didn't mix it, just eat the cream on top, than the yogurt! So yummy!

    I will check theanine for calming, thank you very much for your post.

    I wish you a wonderful trip to London!

    @lexierose your cancer is not caused because you didn't love yourself enough, there is plenty of people that lived a very ealthy life, doing sport, eating well and still got breast cancer so you don't feel in fault. And your father or nobody could of knew, so don't bother find a guilty person eather. It is not the right way. Unfortunately we were unlucky, must of say that, and I think best way to deal with it is to start accepting it and try to live as best as possible and love ourswlf now! Courage and best wishes to all of us!

  • claireinaz
    claireinaz Member Posts: 691
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    I didn't consider the lack of estrogen contributing to anxiety and depression. I hope my estrogen is falling though-the hardest part of early stages of tx is not knowing if the med is working, or is this freaking dragon snaking its way further into my body.

    Lexierose, please don't blame yoursel ffor this crappy turn of events. I beat myself up from time to time for not insisting I get my CTCs checked when I switched from an MO who does check, and they showed slight rising in Jan 22, to another MO who doesn't believe in checking. I can "what if" myself on that one: what if I had stayed with the previous MO and he found the progression earlier? On the other hand, tumor markers aren't usually used for check ups, and I trusted my new MO, who looks for changes in blood values and other symptoms.

    Did I drink too much wine during Covid and give myself this? I don't know. Did I worry and stress too much and cause changes in my DNA? I don't know. I can "should have" all over myself. It won't change the present, damn it.

    But I understand how you are feeling right now. I am still in early stages of trying to believe and accept my new dx and it is the hardest thing I've ever had to do in my life (and I've done some pretty hard things, like watching a husband die from cancer in my mid thirties, for starters).

    April girl, I remember watching Joe Montana during Super Bowl 95 with my late husband who liked the 49rs. He was quite the football player!

    I'm going to do some reviewing of "Cancer as a Turning Point".

    exbrwngirl, I did eat the ice cream with Hershey special Dark chocolate sauce. I felt a little sick after, but only because of the sweetness; ugh. I'm a person who doesn't like that "stuffed" feeling in my stomach-never have-but I know some people love it. That ice cream did give me some discomfort but it passed quickly and it felt like a childhood treat to eat it!

  • sunshine99
    sunshine99 Member Posts: 2,687
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    aprilgirl, what a small world. I, too, grew up in the Bay Area (Woodside) and now have a vacation rental in La Quinta (near Palm Springs). I may have mentioned this before, so forgive me if I'm repeating myself.

    We may or may not watch the game. We don't have cable TV, but hopefully can find it on another streaming device.

    @lexierose I will join the others in saying DO NOT BLAME YOURSELF. Cancer happens and it sucks, but we don't need the added burden of what-we-might-have-done-to-get-this disease. I haven't had any wine since Christmas, but I remember mentioning it to my MO at one point and she sort of shrugged and said that if I enjoy it, then why not?

    Do come here often. We are, if I do say so myself, a lovely group of ladies and we are here to support each other in every way we can.

  • aprilgirl1
    aprilgirl1 Member Posts: 784
    edited February 15
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    @sunshine99 , small world indeed ! Now I'm up in the Seattle area. I grew up in Lafayette, went to Berkeley. My sister lives near Woodside , other sister lives in the Los Angeles area .

    Woodside is beautiful ! I worked in SF after college and when we were first married . We left Calif in 1993 as we wanted more flexibility when we had kids and we love the PNW.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,035
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    Woodside is lovely. Before I moved to downtown San Jose, I lived in Los Gatos for many years and my former school (where I still sub ) is in Los Gatos. Sadly, the Bay Area is suffering from Superbowl sadness right now. Today was the first day since the game that I didn’t hear too many unhappy comments about it.

  • sunshine99
    sunshine99 Member Posts: 2,687
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    Exbrnxgrl, I also lived in the Bronx for one year. I remember our address: 3001 Henry Hudson Parkway. I went to PS 24, as I recall. (At least I think it was in the Bronx.). I was in 2nd grade.

  • brutersmom
    brutersmom Member Posts: 922
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    I can't believe it has been 6 weeks since knee replacement surgery. I have been back on ibrance for just about a week. I am still tired. I am back to the gym this week for classes and I feel I am out of shape. I am walking without issues. Pain is now an ache for the first time in over 1 and ½ years. I am getting excited for warmer weather and being able to take walks. I am hoping after going through this my cancer stays NED for a long time.

    I also decided today after talking to my orthopedic Dr. To file a grievance with the hospital about my stay. I realized when I told him about the care I received and what I saw effected me badly and bubbled back up after or conversation. If I ever have to have the other knee done I don't think I can go back to that hospital and be on that unit.

    Any way back to the good stuff except for knee fatigue I am doing well. It feels good to be back exercising again and getting out with people. Plus my husband is finally seeking treatment for medical issues he has put off for a way to long.

  • elderberry
    elderberry Member Posts: 1,067
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    lexierose: please know that you will get non-judgmental support here. Quite a number of us were diagnosed some years ago and are still living our lives to the fullest. I wanted to give you a hug when I read your post. You are worthy of love because you are you!!

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,035
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    sunshine99,

    Henry Hudson Pkwy? Sounds as if you may have lived in the Riverdale section of the Bronx. Riverdale is in the Bronx but a lot of folks who live there just say they live in Riverdale, which is a bit more upscale than some other Bronx neighborhoods.

  • olma61
    olma61 Member Posts: 1,027
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    Finding joy in the little things…I think that is so much in line with exbxgirl’s intention for this thread. In addition to the exciting activities and admirable achievements some of us have been able to experience, there is also the experience of life…just continuing…. and offering all the small moments of happiness that it always has. Even with that shadow behind our shoulder. I think the trick for me is to maintain awareness of the shadow while not letting it take up too much space in my head.

    I related to joy in the “normal things” and wrote this because that is where I’ve been at lately. Enjoying the company of my adult kids and grandkids, my newest grandson is a total delight and I am so fortunate to be able to be close by and spend time loving on him. ❤️

    I am living in a new state now and have been able to sight-see a little bit so that is kind of a bigger, bucket list thing for me. I was so firmly planted in my home town in the north east and now I am a gaddabout but I love it, mostly. It is also forcing me to shed some of the material things I’ve collected over the years which is really hard for me. I tend toward packrat not at the hoarder level but I do like to save things and sometimes it has paid off. But it’s hard to be foot loose and fancy free when you try to cart around a three bedroom house worth of items everywhere you go. So, I am learning to be satisfied without that security blanket of “things”. And that’s also a blessing for my kids as there will be less to sort through when that time comes.

    It is great hearing from all of you and to the newly diagnosed people, try to take it a day at a time and get through your treatment. Keep the focus on staying as well as possible and following your doctors recommendations. There are new developments all the time in breast cancer treatment, I like to read the Breaking Research News section here to keep hope alive. Outcomes could be much better than they are but if we go back 7 to 10 years we can see that they have improved greatly for many of us so…yeah.

    Life does go on.

  • sunshine99
    sunshine99 Member Posts: 2,687
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    olma, it's good to hear from you. I forget if you mentioned where you were and where you are now. My DH is better than I am about getting rid of "stuff" but I'm improving (sort of.)

    There's a FB group called something like, "Seeking Joy While Living with Metastatic Breast Cancer." It's a nice group—no drama, etc.

    Am moving to Medicare as of March 1st. I never thought I'd be old enough for Medicare, but here I am. I guess that's another thing to be grateful for, right?

  • chicagoan
    chicagoan Member Posts: 1,005
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    I drove to southern Indiana this weekend to see the Eclipse in totality. In 2017, I was still quite sick and couldn't imagine travelling so far for an eclipse but I vowed to do it in 2024 if I was still alive. Well here I am! It was worth it. I found it very peaceful during those minutes when the sun was fully eclipsed. We could hear crickets and see a few planets-just for those few minutes. Pretty amazing!

  • eleanora
    eleanora Member Posts: 299
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    Chicagoan and Divine

    So glad you got to see the totality. Sounds awesome. I had purchased a large package of the special glasses and handed them out to neighbors, many of whom had been unable to find them locally. We saw 90% and even that was very cool. My DS and DDL joined us with our newborn granddaughter (we kept her in the house, of course) and I was so grateful to be able to share it with them!

  • brutersmom
    brutersmom Member Posts: 922
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    I am glad some of you were able to see it. Very little sun yesterday. Had one small glimpse with my phone yesterday probably at 75%.

  • eleanora
    eleanora Member Posts: 299
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    Within just a few days we've had a significant earthquake in the Northeast, a total solar eclipse and Mt. Etna blowing purple smoke rings. Really hoping the cure for cancer is next. ❤️💖💜🩵💙