Life does not end with a stage IV diagnosis (really!)
Comments
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I too (like Moiralf) have not been posting much lately because I am doing well but that is more because I feel that I don't have many experiences to share. I do believe this forum is for ALL stage iv individuals, whether they are struggling or doing great. We can all elect not to read a specific thread if it bothers us.
That being said, I am two years out (next week) from my stage iv dx (6 wks after original dx) of extensive bone mets. I have been very fortunate to have been on Tamoxifen the entire time and that most of the mets have regressed. During the first devastating weeks of my dx the positive stories on this board definitely gave me hope and I would rather live each day with a little hope than none.
Please let us be supportive of each other. We are brought together because of this horrible disease but we are all unique individuals from different walks of life. Of course we will not agree on what each of us think is right, wrong, supportive, hurtful, etc.. What we can offer each other is respect for every one's perspective even if we don't agree.
Sonya
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caryn--I like that you know who you are! I'm so glad that you shared a little snap shot of your life with us. I enjoy reading about everyone's experiences...the good, the bad, and the ugly. I have learned so much here on the boards. I am really thankful to all who share, but I do admit I enjoy reading the good moments the most! Life is what you make of it...I choose to love life for this moment in time.
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When I was first diagnosed stage IV I was devastated. Even though my onc was very positive about my prognosis, I truly thought my life was over. He told me there were lots of treatments available and that I could live 10 years. I didn't believe him ... Not one bit. Meanwhile, I started getting my affairs in order. I started a funeral file. That kind of thing. I was teaching and staying pretty busy and trying so hard NOT to think about cancer. I never thought about going online for support. After two years I ended up going on disability. I was missing a lot of work due to the chemo and SE's. I didn't think it fair to my students to have subs so often. This gave me time to play on the Internet and I fortunately stumbled onto the BCO site ... And women who had lived many years with MBC. Because of their sharing, I started believing that I could live 10 years and maybe even longer as new treatments came onto the scene. This May I will see my daughter get married and celebrate 6 years of LIVING with MBC. It hasn't all been pretty. I don't even remember all the different treatments and chemos I've tried. But I have hope since finding BCO that I didn't have before. Hope from those who share their positive stories and knowledge from those who share about their treatments and side effects. And yes, I have experienced heartbreak when one of my online friends dies from this horrible disease and I know that at any time things could turn bad for me. I know I will have to take chemo forever and it is not fun! I am rambling, but really want to say to Caryn and all those who share their good news and their bad .... For me, hope is what it is all about. Thanks for giving hope where hope is so desperately needed.
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I came to these boards last year after a DX of stage IV last June. I was looking for HOPE and ENCOURAGEMENT not just discussions of meds, operations, pain, etc. Sure, I have bad days and good days as do most of us. However, I don't begrudge anyone their happiness or good news. I'm happy for them just like they've been happy for me when I've had good news. And when I've been scared or worried, many of these wonderful ladies have been there for me. So to come here today and read this fighting and sniping and ill will because someone dared to be positive just ticked me off in a major way. This is a place for EVERYONE with all of our experiences, good and bad, and if some of you can't be respectful to those who are happy or who are trying to be encouraging to others, then by all means, "take a break" from these boards. I read and see enough of the bad stuff already everywhere else. BC.org is where I can come to talk with women who understand all aspects of stage IV breast cancer, not just the fears and horrors of it.
I have hope for a lot of things in life. There's nothing wrong with HOPE. Will I get 20 years? Who knows? I hope so. But you better believe one thing, the years I have will not be wasted on pity parties, "woe is me", and wallowing in misery to the point that I attack others who are also ill just because they are giving a little encouragement. No wonder so many with a terrible disease are alone. I see so many people everywhere who are so miserable and hateful about whatever is bothering them (disease, bad luck, whatever), that they run everyone around them off. You decide if you want to be "that person", the one who everyone avoids. I certainly don't want to be that one.
You get back what you give. So I'm not going to give hell and misery to others just because I'm not as "lucky" as they are. And by the way, don't judge me just on what you read in my profile. I've been through a lot of really horrible things apart from my cancer diagnosis, and most has occurred in the last 2 years.
Sometimes you can't control what happens to you, but you can control how you react to it. Choose your reactions and attitudes wisely. People are watching you and you might be the only good they see.
Caryn, don't ever apologize for what you posted initially or the responses you've given. It seems to me that others owe you (and the rest of us) an apology. If anyone has a beef with my attitude, that's your problem not mine. I don't need anyone's approval to be happy. But I do have friends and family who love me and I love myself too. Most importantly, I have God's love. And if that statement offends anyone, or if any of what I wrote offends anyone, then here's a saying I learned: Scroll and roll baby. Scroll and roll.0 -
wanderingsprite,
Well said you are absolutly right. We should be supportive of everyone good news or bad news and good news gives all of us hope and encourges us to wake up tomorrow. If you dont agree dont read this forum and move on. Stella
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Hi Ladies,
Just wanted to say thank you again. Group hugs are not a bad thing.
Stella,
I read your post before you deleted, so you're included in the "thank you" too!
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It's been almost a year since I found out I'm stage IV, but the liver mets were probably there a few years before. No symptoms. What a whirlwind of emotion! I was so devastated. Now I think I have accepted where I'm at and am learning that life is still very good for me.
My husband and I are musicians, so our work is play. Today we were in the recording studio doing pre-production for our first CD. We have gigs every Sun, Mon & Tues. I was able to keep these comitments through 8 months of taxol+avastin. Now I'm starting the A/A combo, and we'll be able to travel more. We started doing this before my diagnosis, and just decided to keep living our dreams as best we can. I may have to stop before I want to, but I'm glad to be well enough to keep going.
For me, what's important about this discussion is that each of us know our life matters. The little things mean so much to me. Smiles and love and sharing. Hugs and talk and touching lives. I feel that being shaken up has cracked my shell and opened me up more to life.
None of us knows how our story will turn out. We each are struggling to hold onto what hope we can. For me it helps to focus on each day. this one was good!
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Wow ladies!
Very interesting, kinda like a soap opera. I didn't really think of my diagnosis for quite a while reading this thread!
I of course am sucked in and must report how I feel about all this, as I am a newbie to this site. I came here upon being upgraded to stage IV and in fear of my life. Planning my funeral in my head and worrying about if my little girls will miss me or end up with a early breast cancer diagnosis like me. 37 years old with a 2, 4, and 6 yr old at initial diagnosis and two years later the proper stage IV diagnosis that was there all along (oops! Minus two years from my official stage IV life expectancy!).
Strait to the stage IV forum I went. I panicked and cried and followed story after story searching for hope. I needed info., but first I needed hope. I finally found it in many threads, thank goodness!! I would have never been back without it! Initially, I found myself leaving feeling worse leaving than when I sat down to read on this site.
This site would not be what it is without the good and the bad. The wealth of information you ladies all supply is priceless! If I need information I can find it and find people to discuss the trials and tribulations with. I struggle the most currently with my fear of the future and I need hope. I savor all the good stories and long-term survivor stories. I came out of gate in that 2-3% as stage IV (bone met seen, but not biopsied and so ignored). Why can't I believe I may be in that small percentage that will allow me to at least see my children graduate from high school? I love love love stories of longevity and we all deserve to hear them if we desire.
From just reading the title of the thread some people should have passed on it and looked for what they needed at that moment. Obviously, Caryn's thread did not hit the mark for them. It hit the right spot for me and thank you Caryn and everyone else who feels the same.
RCR
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rcr,
Thanks for your contribution. This was not really a soap opera, so much as a difference of opinions. That's what makes the world an interesting place. Whether our lives go on for weeks, months or years, we can always hope (tempered by reality, for me) and enjoy as much of it as possible. Don't give away what bc hasn't taken until you absolutely have to!
Caryn
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Caryn,
Soap opera was probably a poor analogy:) as they are meant for simple mindless pleasure and this thread is anything but that! I am no means living in a fantasy world. I really seriously doubt I will be sitting in some swanky retirement home drinking tea and playing cards in thirty years after winning the lottery. But I really felt like that rant about how stage IV is a death sentence put me over the top reading it. As I read it I could clearly feel a sense of panic wash over me and It was so apparent how my mood was lowered and continued to go lower as I read! It made me angry for a post like that to follow such positivity. Thank goodness for the rest of the threads that inspired once again. I will continue to fight, as I am a fighter and not a survivor, and live my life to the fullest between the rough times. And I won't complain on this thread anymore:) sorry about that.
Breast cancer truly sucks,
Rhonda (RCR)
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Rhona, so sorry you are here and you are welcome to complain. When I was first diagnosed I came to this site to hear stories of hope. I still need those stories and encouragement and I took Caryn's post as just that. The community aspect of this site means sharing the good and bad. Unfortunately the nature of this disease and this site means that there will always be someone who is not doing well.
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Really needed this thread this morning! Funny how things like that work out. Diagnosed with bone mets in January & I'm still struggling with EVERYTHING about it. Just the changes in my body have been unbelievable & I can't seem to get past pain, stiffness, sluggishness, and slow acting pain meds. Never during my first journey did I doubt I would be cancer free. I find myself now wondering if I'll even make it a year with the way I've been feeling. Almost like, if it feels this bad at first, will it only get worse? If it only gets worse, and it already feels this bad, how much longer could I have? Were these normal thoughts for anyone at first? I'm usually a very positive, upbeat person. Bone mets kicked me in the gut & I'm just not anywhere near steady on my feet yet. I'll get there, I know I will, but I do see it being a much longer, more difficult journey.
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Thanks, Caryn, I really appreciate your words. It's nearly four months since my Stage IV dx and I'm only just believing that I may be able to live another 44 months with QoL and see my youngest son graduate from high school. Hope is what is needed when you first get diagnosed with Stage IV, you give newbies some of that hope, Caryn.
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Firelady and anyone who is struggling with the severe pain of bone mets. I posted this on another thread about bone mets, so I'm reposting here:
To all who are experiencing pain, especially the "newbies": I had
extensive bone mets when I got my DX last June. Skull, ribs, sternum,
spine, pelvis, tailbone and upper left arm. I was in a lot of pain from
that, but until my DX I thought it was just arthritis or something.
Wrong, my stage IIIA cancer that I had "beaten" in 2002-03 had come
back. My onc. put me back on Arimidex that day last June, and Xgeva
shots began last October. As of a few weeks ago when I had my third PET
scan, I have nothing "lighting up" now. (Pardon me all, but Praise
God!). Those two treatments helped a lot to control the pain (by
regressing the cancer in all those lesions in my bones) BUT they are not
the only reason for my pain lessening.
Last August when I
complained of pain, a kind lady (I think on this site) suggested
Fentanyl patches. I wear one 24/7, the dose is 25mcg. Since the
Arimidex and Xegeva have now helped so much, I may step back down to the
dose I first started on, 12.5 mcg. If not, at least now I don't have to
go any higher. Many women are scared of Fentanyl thinking it's so
strong you're a zombie. That's not been true in my case at all, but I
had already taken Oxycodone sometimes for the worst pain, and that's key
to starting Fentanyl. I am not incapacitated at all from them. I still
drive, still work a full time job, still go home in the afternoons and
work around the house, still do almost all of the things I love. I have
even started back riding my bike! The patch hasn't affected anything
but my pain, and that's in a good way. So if any of you are having
debilitating pain, please ask your oncologist about the Fentanyl
patches. They aren't the horrible things that some people lead you to
believe. Some of the naysayers have never tried the patches, or some tried
them briefly and attributed everything bad that was happening to them to
the patch. I trust my onc. and he would never have me on anything that
would cause irreparable harm.
Think about using these patches ladies, at least for a while. Hugs!
FYI: my response was on this thread, it might be helpful for those with bone mets to join this post too:0 -
Good post on pain.
BTW, no should need to worry about complaining, ranting etc. here. Perhaps, as an unintended result of a few posts on this thread, the other thing that's come of it is that the stage IV forum should be a place where we can all express our feelings good, bad and anything in between, no matter where we are in the progression of our disease .
Caryn
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Good morning,
I just need to ditto what others before me have said so eloquently. When I was dx stage 4 this past summer, I was devastated as others before me and after me will be. Friends, onc, family were great supportive a "you can do this" attitude. But what I needed was to hear from others who were traveling the road ahead of me. For me it has been here on these boards. The positive stories carried me thru the first awful weeks, I just needed to know it was not all over in the next month. 6 months out ( still very much a newbie in this stage 4 group) I am doing well and living my life. Even the days where I go into a funk. I know it will not always be like this, but for now I am enjoying what I have been given. I know others have not been so fortunate in response to treatment and SE's , I do not share my good news to upset anyone, but to give others the possibility of some good life, hopefully years, even with stage 4.
Caryn - thank you for this thread and to all the others who share open and honestly, even toward the end. It is a community like no other.
Best,
Nel
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Alright, before this goes to my head...no need for thanks
As I have said, we need to be free to have the stage IV forum reflect all flavors and variations on this stage of bc. No one should stifle their happiness or sorrow. We probably do some of that in the real world, so let's feel safe to let our hair down here. Part of that is acknowledging that your life can be pretty normal at some point. Not for everyone, everyday but it can happen.
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Love it! I really needed a lift today and you are all doing a great job, thank you! I'm currently on Morphine tabs twice a day and he's already increased the dosage once. I also still take one dose of the steroid (Dexamethasone?) they put me on with rads. I'm on Aromasin daily & take monthly Xgeva shots & the intensity of my bone pain actually increased on March 4 with my second shot. My first shot was nothing, flu-like symptoms for a couple of days and that's it. My second shot was completely different. Ended up in a 3-day episode of complete confusion, pain, disorientation, etc. Had a complete emotional meltdown & had to call dr by the end of the week (last week). My next appt isn't until April 1 but because of the pain intensity he's ordered a nuclear bone scan for Monday to make sure we're not dealing with new mets. Everything up until last week had been going well. Other than the stuff that goes along with hearing Stage IV is now part of your future, I was feeling okay, my progress was good, my treatment seemed to be agreeing with me, then I got that second shot. Not ready to just throw out the Xgeva, but I am curious to hear his opinion before I get the third. And, I will definitely ask about the patches. I've never heard of them, so is this a pain patch that would replace the Morphine tabs I'm taking or be in addition when I get the shot?
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kayb posted this on another thread but it quite fitting here.
I was reading an article about Yahoo CEO Sheryl Sandberg that had nothing to do with cancer, but she made a statement that really struck a chord with me. I thought some of you might like it, too. She said:
Don't leave before you leave.
This was not in reference to bc, but is certainly apropos for many of us. Someone once posted, shortly after dx, that she was going to give her clothes to charity and prepare for her demise immediately, so as to spare her family the work. Unless your mo says death is imminent, you may as well live.
Caryn
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Hi Firelady, I have the patch and I still have the Oxycodone pills for "breakthrough pain". The patch is to keep the total pain level down. Sometimes it will "break out" so that's when I use the pills. Sometimes I just use Motrin!
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Caryn,
You better believe I won't "leave before I leave!" And I took your post for exactly that.
Also, what makes this board so interesting and wonderful is all of the different points of view. Yay! There is no right or wrong here, only real. We should always feel free to be honest about our feelings, and not to be judged for them. For that I'm grateful.
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Dear newbies - there are suddenly a number of you making yourselves known to the rest of us in this discussion. Hello and welcome. I'm so sorry you have become a member of this club nobody wants to join, but so glad you have found us.
For me the ladies on this board have been such a valuable support through the 5.5 years I've been stage IV - yes, 5.5 years!!!!!
I feel so much less alone, have been given so much hope, and yes have shared many tears with those who are not doing well. Life with bc has not been easy, and even though I know what the outcome will eventually be, for now I am living, not waiting to die.
When I sink, these friends lift me with their good news and remind me that there are so many things to celebrate, including the sun shining after days of gloomy fog. When I feel good or have something positive to share I hope it brings someone a smile.
When someone shares their fear and pain, I feel it and my own, knowing I'm in a place where I can be real. Thanks, Rose - no right or wrong, only real.
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For anyone new to their mets diagnosis who has doubts about the possibility of living well with late stage disease, come on over to the "What are you doing for fun," thread! We're all trying to make the most of this amazing life in spite of our various stages of pain, disability and fear, which we all suffer from in some way or another. None of us knows how long we have left on this earth, but we are not sitting with our cancer "waiting to die", as Jill says. As Caryn said so well, " Don't let it steal your life one day sooner than it has to."
If there is one thing that most of us recognize when we get here, it's that each new day is a gift.
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sandilee,
I just want to include you in one of those big group hugs that have been alluded to. Seriously, if we censored ourselves, the "what are you doing for fun ?" thread wouldn't exist nor any of the threads celebrating good scans, NED etc. Yes, we have stage IV bc, yes, it sucks but why not make the most of the days we have? Shortly after my dx (thought to be stage II for a very brief period of time) my lung collapsed. After a frantic rush to the ER and the brutal insertion of a chest tube, 6 days in hospital, two more chest tube insertions and being sent home with a portable chest tube, I took a short walk. It was one of the best walks I ever took. I doubt I made it around the block, but it was a lovely November day,the air was refreshing and the sun bright. I was not in good shape, but I was home and alive. It was a wonderful day.
Caryn
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I just want to tell you how happy I am to have found this site.
Your optimism is great. I had my diagnosis of mets in the stomach and colon this January - you know how I felt. But you are right: Life goes on, and for the time being it's more or less like it used to be. I am working, taking care of my 7year old son and hope it will go on like this for quite a while yet.
And should I feel depressed again, I'll just come back to read your encouraging comments (I have found nothing like that in Germany, where I live). Thanks for those!
Lola
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I love, love and love to hear successful stories. I get scared and read for strength to live for today. I just finished xeloda/exempra in Jan and just started radiation with another 5 weeks to go. So, please don't stop posting the good things.
Thank You
Linda0 -
law828,
Yes, we all need hope even though we are all at different points along this scary path. For better or for worse, we are here for each other.
Caryn
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Just a quick note to thank those of you who PM me to support a contrasting view! Clearly the tone was such that you wouldn't do it publically. Considering the level of emotion, that much I understand.
Agreeing with Caryn is the only acceptable answer. She's the teacher. I suppose we are all being taught a lesson.
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Rosevalley! I always appreciate your intelligent posts. And support them! How deadly boring it would be if we all agreed, all the time, like some sort of horrific little stage iv clones. It makes me sad that others are afraid to state their mind, publically. Freedom of speech!
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rose valley,
Yes, I am a teacher, but not on bco. Everyone does not have to agree, and I have no lessons to teach, here, only my own experience and perspective on being stage IV. I would sincerely hope that all of us feel free to express our opinions openly. There is no penalty for differing opinions and my ego and self esteem are not in the least bit tied up in this. That is not who I am. I don't know why you've chosen to target me or my profession but I only wish you well.
Caryn
PS: I only teach elementary school subjects. If anyone needs help, with reading, writing and arithmetic, I'm your gal
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