My Husband, My Life, My Love, My Family, My Cancer
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Is it awful that I am absolutely jealous, green with envy, of those who are stage IV and NED or NEAD? I never questioned “why me” when I was originally diagnosed with stage IIB; I figured why not me? But the stage IV diagnosis has had me angry and depressed and feeling hopeless at times. Everything is compounded when I can’t even seem to reach stability. I keep fighting and the cancer does too. Last night I was thinking about how for the rest of my life I will be sick. Do you know how bad that sucks??!? I’ll never be healthy again. And I don’t want to be sick! I don’t want to die! I want to live blissfully to a old age. Every day that goes by just inches me closer to an inevitable death from cancer. I want to make a difference in this world. I want to see grandbabies (and would prefer to watch them grow up!). I’m not stupid... I know that everyone is going to die, blah, blah, blah, but you guys know as well as I do that it’s always at the forefront of our minds. There’s no backing out. There’s no going back. This is it. And it pisses me off. Okay, rant over for now. Just needed to get that off of my chest.
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Runor~I had a huge lump of fat necrosis removed from my reconstructed breast last month and two very large adhesions. The skin while healing does crazy things.. relax and take a deep breath. It may be hanging over us everyday, but not you yet! The worry remains. But until there are facts to support it. Just pleasetake one day at a time. Hope you have big pockets , because there are a lot of us! Love you sweet friend! 💙 ~M~
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Shelia~We all understand how you feel. I describe it as I was pushed into a room from my doctors hallway, when I came out of the office, everything for me was different. I felt different about everything, and honestly everyone. I am right alongside with you. Stage four kills women. It does but I'd rather be alive fighting this cancer now adays when I truly hope and believe they are getting closer to a cure . Then to have this inthe early 80's when they basically had fewer options in treatment lines. I am hugging you tight. I feel those same anger and sadness feelings every single day. I hate it. And I hate cancer. You're not alone. No you're not. Much love ~M~
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runor, the more the merrier in my pocket but please, no bagpipes after midnight. Also, I have scar tissue and skin thickness on my radiated side that always gets noted. It freaked me out but of course I’m better now that I know it’s just treatment related.
Pretty calm this morning, just told myself the good things, no pain, no gastro issues, last tumor markers were 12. Anyway, I’ll let you all know when I find out for sure. Thanks for being here!
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we love you Mae! 💙💙💙 Yahoo! Much love ~M~
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Still stable! 🎉
Guess who’s having Margaritas tonight! Me!!!
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WOOHOO, Mae! I am doing my happy dance for you. I love to hear such good news. Enjoy those margaritas. WOOHOO!
Hugs and prayers from, Lynne
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Congrats Mae. .and that is my favorite mixed drink. I snuck on this thread to say hello to all. Now I will jump off and stay with Ibrance and liver folks!
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Mae ! ! ! Cheers!
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Shelia, I hear you! I'm envious of the Stage 4 NED's and NEAD's and I sincerely hope to be there myself one day. I hear you about being sick for the rest of my life, barring the miracle of a cure in the next couple of years. I think that is the second hardest thing because in my pre-MBC life I was seldom sick with anything! Guess I'm making up for it now. The hardest thing is dealing with my limitations and pain when DH and I had such fun and ambitious plans for his retirement.
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Well, thank you all for being in my pockets today, I wore big pockets, so no to squeeze you! Had a great tech, told him how worried, preocupada, I get for these CTs with contrast as veins are so bad and guess what, he found one first go. Stayed with me and made sure I was comfy, and it was over in a flash. Will you all come again? Results next Tuesday so a little preocupada until then.
Mae, hope your results are good, and Runor, and thinking of Gracie, and Muddling and Tanya. Grannax, have a great trip. Daniel, glad Lesley is home. Best place in the world. Love to Micmel who brought us all here, and to everyone I missed, sorry, but love to you too. Try to sleep now. Feeling a bit shattered lately
In the time to write, I see Mae has good news. Woohoo!! Happy for you
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way to go Mae! I am also doing the happy dance as well. Very good! I can't drink, but I can eat. Lol what are we having? Giving you a bear hug! Much love!
Waving hello to ~50's nice to see you always !
Sandi~ welcome to our second home. You're always more than welcome to stop in whenever you choose !! Alot of people Pop in and out. It's nice to see you here. Hope you're having a pain free day!!
Muddling~ seeing that pic made me thirsty. Lol I always loved pina Coladas. They were my tropical favorite 🍹 drink with the little Umbrella... my ass didn't like it lol drinking makes you gain weight. I learned the hard way!
I'd love one now though. Love coconut 🥥!! Hugs to all! Much love. Waving hello to Shelia. ! Hi Holmes. Haven't seen divine! Hope all is well bigbhome! Tanya... Elle.... Magda..... Minnie....Grannax thinking of you too! Daniel and Leslie....Patty of course 🌷❤️...Runor.....Blueshine....Miss Bianca.....My good friend GP... Chelle....Nan....Daywalker...Joyner....Hobbes..katyk...Parry...
love to everyone. ~M~
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Thanks everyone!
Muddlingthrough, I get it. Before cancer I only had allergies and I think the last time I had the flu or any real sickness was 10 or so years ago. I was a little jealous of DH recently as he was having a lovely dinner with interesting people in Santa Barbara while I was having treatment in the cancer center a eating leftovers. At first, I was annoyed that he could forget about it but honestly, he can’t either. We all fear what’s next, not death necessarily but the unknown. DH and I have decided to have fun now, no more waiting for the perfect time.
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me too, before cancer, I hardly had a cold, and was lucky after first dx, chemo and radiotherapy to then stay healthy for 10 years. Now almost 2 years after stage IV dx, it's honestly a struggle for everyone, I know not just for me, but DH and our kids too, and my Mother, list goes on. Feck Cancer as we say in Ireland
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lol At feck. I like that! Yes I do Minnie! Well said !
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Minnie, major blonde moment confession here. My DH drives bands on tours, many years ago he drove “the three Irish tenors”, after a local Christmas show we hung out and got drunk after, at which point, i said “do they celebrate Christmas in Ireland?” When they stopped laughing, they reminded me that Christmas isn’t an American holiday and that Jesus is popular everywhere. Oh yeah, duh, lol
I love feck cancer!
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Woohoo, Mae!
Rumor, I had at least three major scares after my battle with bc, before Mbc diagnosis. They were very scary, but in the end one was so stupid, it turned out that the radiologist had misread the mammogram. I'm praying that yours is great!
Grannax, have a great trip and know that I have been praying for you!
Everyone else, I read almost every day and I keep all of you in my thoughts and prayers everyday!
Claudia
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Sheila, Honestly, secretly I am so jealous of all the people who are Ned and Head! But don't tell anyone, it's a secret!
Claudia
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Mae, GREAT news for you! Eat, drink and be merry!! I’m very happy for you!!0
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Hey bigbhome, hows the hubby doing?
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Bigbhome~its so wonderful to see you.... you are thought of everyday. I am hoping you and your DH are doing well. I personally cannot wait until Fall. I want to start walking again but I cannot handle the soup like temps we have been having this summer. I am sending you a Great big hug. Love you. Lots!!
Lynnwood~Waving hello and hoping you are getting out of your funk. Sending hugs to you too.
Much love to all!
We need a shirt saying FECK you cancer!
Sweet dreams Mae. Happy for you!
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Sheila!arie- most of us with stage IV cancer will never be NED. Damn it, that’s what I want too! Just had this conversation with MO at Huntsman Cancer Institute. But stable is good! Even if told NED you still need treatment - is that right NED ladies? I’m not NED but most days feel quite good and do a lot. I would love to be told NED but easier for me to give that up and just keep going. One more day, every day! After my damn root canal tomorrow (which ruined a trip to OR coast) my consolation prize is a backpack in the nearby mountains. Can’t wait
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Gals-just back from Nashville,TN with my best girls...absolutely lovely time. Endured Xeloda feet in my cowboy boots!
MRI tomorrow to check on liver and how Y90 and Xeloda are working. Thinking report will be good, but we just never know, do we. SE's from Madame X are increasing as far as hand and foot syndrome and GI stuff, so MO gave me an extra week off this cycle.
Grannax-heart aching for you as you deal with progression It sucks big time and I know it's in my future for sure. Sending love to you.
Mae-yay for STABLE! That magical, fantastical, glorious word!
Micmel-you are a gem for keeping this thread alive! Hope the reception is magical!
My Sis is still here visiting and has been such a great presence! She even took care of DH while I was away after his rotator cuff surgery. Luckily, he has had little or no pain.
I hope to get back to more regular posts soon. To any of you feeling anxious, in a funk, ticked off, may the force be with you as we dwell in this hellish microcosm of MBC. Love you all, Mary Jane
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Mae and Micmel, if you ever see an Irish TV programme called Father Ted, Its hilarious, makes fun of religion, everything,and Feck is often used by the housekeeper. Half of Ireland say Feck, less offensive than the other F word. So funny Mae re Christmas and Ireland. It's just another excuse for a 10 day drinking festival. We love those in Ireland 😂
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Sheila, I'm prefacing my comments by saying they are made in a spirit of lovingkindness and goodwill and I hope you wil not take offense as I mean only the best.
First, nope, it is not awful that you are jealously green with envy at those at stage iv mbc who are ned. Do not even apologize for those feelings. Own them, embrace them, face them. We do not have to stiffle our feelings just because society in general has a problem with women having strong negative emotions. We do not have to be only kind, understanding, longsuffering women who mildly profess, “it's okay. I'm alright." Claim your emotions, the entire spectrum of them. Good, bad, weak, strong. These emotions ARE what make us women, and I believe we are better when we acknowledge what we feel, rather than try to bend our emotions to fit into what others consider “acceptable". I believe by acknowledging them, we can work through them and learn from that and therefore, move on.
After saying all this, I must say that yes, I'm one who's been stable with mbc and your comments don't offend me in the least. I find it humorous that anyone would envy my situatuon; that there are degrees of stage iv/mbc. And yet, there are. So please know that I am always aware that others, with the same disease as I, have struggles that I haven't had to deal with yet. It is never lost on me. Never. I do not take being stable for granted. I've lost many people on these boards that I've come to get to know and that is never, ever easy. Mbc is so unfair.
I've had my share of envy and jealousy towards those acquaintances in my life who haven't ever faced an illness like mbc, who roam the world carefree, capable of hitting high emotional heights that I no longer can feel. But I've come to learn that eventually, everyone delas with hardships of some kind.
No, there's no going back. So, in moving forward, I try to live a more meaningful life, one with intention, one that is more present minded. All my best to you
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Divine, Your comments are worded beautifully, and I cannot imagine that anyone would be offended. The conversation started by Sheila took me back a couple of years. I had a friend on these boards with whom I frequently talked on the phone and texted. I remember when we discussed the fact that one of the regular posters to the Bone Mets thread had just announced that she was NED. We both proclaimed our genuine happiness for that person, then we were both silent, unusual for us. I finally said that I had to admit that I was jealous, that every time I heard that someone was NED, I would think "Why not me?" She started laughing and confessed that she felt the same way. It was the first time either of us had expressed those feeling so out loud because we felt guilty for some reason. Those feelings did not make us any less happy for those who are NED, but it was nice to know that I was not the only one feeling that envy.
A lot has happened since that day, and I can see how my perspective and even my "goals" have changed. I have seen progression twice, and it frightened me, but I am still here and plan to stay for a long while. Would I still like to see and hear "NED" or "NEAD" on my scan reports? Definitely, but I have a new appreciation for the words "stable" and "improved", and I have seen both of those words on some reports. My bone mets are so extensive that I have resigned myself to having some remnants of them forever, so if other mets disappear or shrink, I celebrate. If they stay the same, I still celebrate. Why? Because it means the treatment is working. Don't get me wrong. No one would be happier than I if a cure was found that would work for all of us. I have not given up hope of being NED, but I discovered that stable is not such a bad place to be.
Our experiences are all unique, yet we can understand each other's struggles and victories. These threads provide us with a place to share those experiencesand the emotions that accompany them. No one can understand our own challenges with MBC better than our MBC friends here. I hope that everyone here realizes how important their contributions are.
Hugs and prayers from, Lynne
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Thank you, Divine and 50s. I wouldn’t want to offend anyone with my personal feelings, as they already make me feel guilty. I, too, am so incredibly happy for those who have reached NED, NEAD and stable. I just long for the day I’m told my treatment is working, and to hear the word stable would definitely be cause for big celebrations! I guess jealousy is human nature, but for me it just so happens to go hand in hand with feeling guilty. This forum has been amazing and so helpful. As you said, no one else can understand. I appreciate the understanding I receive from all of you, and the encouragement to be me and feel my feelings. So, again, thank you so much.. xo
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Mae, so so glad to hear your news!!!! Woohoo! Time to celebrate!!!
Got chemo Tuesday, today am tired, hoping things are a little better this round and that I'm not so sick!
Grannax, I hate that you have had progression. I've been thinking of you. Won't know for another month if I have any progression in my liver or my brain. Am hoping for the best but it's always scary! Keeping you in my prayers!
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Hey Girls
Congrats Mae. Margarita looks tasty.
By the way if anyone does Starbucks it’s half off day today fro 3 to closing. Sign up on line.
Just left MRI had to get a pic line and extra Valium for the 1 hour and a 1/2 amusement park ride. Made it out didn’t hear much movement in my pockets I believe you cheerleaders were hung over from celebrating NED.
Good to see you Minnie MJH Big divine Lynwood196
Gracie- I hope your SE get better soon
Micmel shelia 50s girl Katy. Thanks to all of you and everyone I forgot for always being here in mind and spirit.
Stable NED NEAD all cause for celebration and help me keep my mind on what I do daily for me.
Definitely have enough emotional crap from kids friends etc
Micmel your big day is approaching quickly. You must be out of your mind with excitement. I smile thinking of you preparing all those beautiful decorations.
Tanya
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everything about the word cancer is terrifying, and everyone feels the way they feel and it's valid.. no matter who you are are what your “status is" can change as well. So it's just words that allow us to breathe that breath and take another step. Somedays I find the emotional depression enough to feel like bricks on my feet instead of shoes. Preventing me from even walking down the steps to even eat anything. It's paralyzing and knowing it is there period is enough to scare the hell out of you.
Nead or Ned bring no guarantees. It just merely means this is a reprieve from more extreme torture. There are still awful sickness side effects, from the medication we will never be free of, but to perhaps just change with out warning. The crippling exhaustion that nothing can penetrate.... even ritilan... as I have learned. It is like running an engine with no fuel with that last cough of fuel reaching the pedal to power through the last few feet before there is nothing left.. Cancer is the purest form of evil there is just nothing worse than any disease that one can never be free of. Everyone's feelings matter. Of course it's natural to feel that way. We all want the same thing. For sure. A cure. Or to hear don't worry. You're clear. I love each and everyone of you because I understand. Don't ever be afraid to say how you're feeling. Ever! This is hard stuff. Beyond imagination hard. I value every thing about you ladies. Especially, your words. You're all valuable and I wish nothing but NEAD OR NED for us all always. CURE would be even better. Much love ~M~
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