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

Terre and nbnotes, thank you for your wonderful posts! Beautiful expressions of how and why this thread is important to many. The stories you both shared are an example.

"Life Does Not End With A Stage IV Diagnosis"- no, it doesn't. We still have "our joy, our sorrow, our fears, our good times, and our bad times" and I will add our good selves and our not so good for whatever time we have left. I take this thread as a reminder to live the very best I can. To me this means not just in what activities I pursue but in my relationships and especially in my relationship to myself, and my inner life. Nbnotes, it's a courageous thing to say that you are the better for your dx (I hope I understand you correctly.) I feel that way and I know not everyone will agree or understand. and it will anger some. We do all experience this stupid disease differently and it may be that I have the luxury of doing well initially which brings a space to experience this 'live like you are dying" thing.

Terre, you may not think you are socially skilled but you are a skilled writer!

(((Terre))) I just felt like a hug.

So glad to come across this thread! I am still new to the stage 4 diagnosis and I'm still trying to figure out my "new normal"! Going monthly to the oncologist for Xgeva and Lupron injections. Femara seems to be working so far for my lung mets and finished rads to my right hip (acetabular dome).

I'm going back to work in a week, but I'm dreading it! Work for me is a huge stressor, and I'm trying to find a new job.

Your posts are so encouraging to me, I thank you all!!

a nice PM from Terri has me back on BCO after a couple of months hiatus. I've only visited two of my favorite threads ... When you are so far behind it takes a while to catch up with the reading! Surprise, surprise, Caryn is an active poster on both those threads. I do not envy Caron's NED status in the least. I am happy for anyone who is NED even though my last scan showed slight progression. I have always been a bit of a Pollyanna and choose threads that give me hope and encouragement. I also frequent a place to talk of death and dying because I want to be prepared when that time comes. I am free to block that thread or stay away from it whenever I choose. I honestly don't understand criticizing another for their posts ... Positive or negative. We can choose to block. We cannot choose what stage or grade "our" particular stage IV is.

good to be back, kiwi, though I have spent the last several hours reading to catch up. Will be gone again and have to catch up on my return! Thanks for the good thoughts and hugs! My onc has given me a short break from chemo so that I can enjoy the trip. Just need to kick this bronchitis to the curb by Friday! Have missed you all

thanks, Surfdreams! I know I will enjoy my trip. So fortunate to have relatives who live in Norway guiding us around and making all the plans. I saw on another thread you are taking namenda. Will be interested to see if that helps. It was prescribed for my step-father for dementia but he wouldn't take it. He should have!

Andrea, good points and great photo. That's a fun-looking bunch posing amid some darned impressive scenery!

Tina

I've always looked upon this thread as offering hope and a degree of comfort for those facing mbc. Granted, some people suffer more acutely than others, and we all deeply wish that were not so. To those in distress we do our best to offer comfort, and to those who are NED and doing well, we offer congratulations and many more years of the same.

Anyone who has been diagnosed with metastatic disease, irrespective of whether it's one met or too many to count, should have a safe haven here.

Andrea! Welcome back! Love the photo - just fantastic on many levels - the people, the scenery, the joy of the accomplishment. You go girl! And thanks for the compliment on my writing. I just basically wrote what I feel.

I feel rather pathetic and whiney because I know my problems are so small. Just met a guy on the elevator who had on a pink ribbon pin and I mentioned it. He said, "yes, I wear this to encourage discussion with people. My daughter died of MBC last year. She was 40 and leaves 3 small children behind." I told him how sorry I was for his loss. He got a bit choked up and said, "she was the bravest person I ever met". I again expressed my sorrow at his loss, and he shook his head, and said "I wear this so people will talk to me about it. It needs to be talked about - there needs to be a cure. It's an epidemic and women, especially young women, are dying from this disease." He also said, "I know about pinkwash, but I wear a pink ribbon because people know it means BC, and I can open up part 2 of the conversation about MBC." Incredibly touching. And good on him! 's how I'm maintaining her legacy."

It was incredibly moving and touching, and made me a bit sad. But also made me smile at the same time because the word IS getting out - we need a cure. Now! No one - young, old, male, female - should have to die of this disease.

Hugs,

Terre

Kiwi, thanks for sharing that! Incredibly moving and touching just reading about it.

Kiwi - thankyou for sharing

Like Caryn, I am NED and doing well, tho stage 4. I refer to stage 4 as a weighty companion. There is a continuum, but this companion is with us every day

Well said, Nel!

Hi, all,

I've been a lurker on the bco forums for about two years now and have always been hesitant to post my story or any of my questions or answers because, while I am Stage IV like all of you, I am a relatively healthy Stage IV, just like Caryn. I've been worried about backlash of the kind that it seems she's garnered over the last several pages of this post. But I clicked on this particular thread today because I am looking to find a way to LIVE with Stage IV, and not just plan to die with it. Okay, have I piqued your interest? My story…

I was diagnosed with Stage II IDC on 7/29/13, so Wednesday was my 2^nd "cancerversary". I had a double mastectomy with axillary dissection in August 2013, was slated to begin chemo and then my breast surgeon recommended CT and Bone Scans in September 2013. Well, on 10/2/13, the bomb dropped—I had a bone met in my rib and I was now Stage IV. I thought, "well, that's the end of that". The chemo was off the table and I was started on Tamoxifen and Lupron (44 y/o at dx, pre-menopausal) in November 2013. I hesitated for awhile to go ahead with RT, but smartened up in February 2014 and had 23 rounds of targeted therapy to the rib met. My next scan (and the next, and the next) showed that the lesion was getting more and more necrotic, and no new lesions were showing up. As of my scans this past Monday, I am still NED. Hooray, right?

Well, while I tell everyone who asks after my health that I am doing very well and have no physical side effects (besides hot flashes and night sweats, for which I keep a few extra t-shirts by the bedside), I never mention the mental side effects. Yes, I am much "healthier" than the majority of ladies with MBC, and my heart aches with the stories I read about their trials and tribulations. However, I still have a cloud hanging over my head which is very dark and very heavy. I have scans every six months to tell me if I'm going to live another six, or if I'm going to go to an even darker and, probably, a painful place. I can no longer look more than six months ahead. I think, "why should I contribute to my 401k when I won't be around to use it?", and, "why should I bother working when I could be home with my 11 y/o daughter, or cooking for my family or planting a garden?" Well, having become accustomed to a two-income family for the past 15 years kind of answered that last question. But I feel as if I'm wasting my life at work instead of doing something meaningful. Yes, I am going on vacations which are planned for more than six months in the future (with proper trip insurance, now). I am going out to dinner more often. I am getting together with friends and doing silly things. But when can I ever start to look beyond that six-month mark? How do I remove that invisible barrier in my head that prevents me from having a positive, long-term outlook?

I would hope that I could join this thread and have all my questions answered, or in lieu of that, at least work on some peace of mind so I can LIVE… I do not wish to be the subject of attacks by those that feel I'm not "sick" enough to post, so if that's the case, BLOCK ME NOW. I have no time in my life for negativity. (You should see how many people I've un-followed on Facebook…)

So, ladies, if you will let me join you in your quest to live well and live long, I would be honored to join your ranks in this thread. I may lurk more often than not, and forget to check back for days/weeks at a time, but I will be back. I need you. My family needs you. Help me to learn to get on with my life.

Most sincerely,

Rena