Life does not end with a stage IV diagnosis (really!)
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Thanks spookiesmom! I don’t think it will really hit me until late July when I don’t start preparing for the new school year. Right now I just need to decompress from the most unique school year ever (as well as the last third of last year!). I do plan on subbing to make a little extra money while I can and I really do adore being in the classroom but not full time 😉
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Yes, that’s when it really hit me too. When I usually would have gone back for fall meeting. Then to see the busses out, and me not on one. It was a huge adjustment. I missed it, but I didn’t. Now,11 years later, I’m over it.
Enjoy!!
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Thanks so much for sharing Piggy99! I'm happy for you and celebrate with you on your success! Congratulations!
Please do we not allow each other to brag? Let's all brag more and be happy for each other!
Thank you to everyone, too, for sharing their stories. ❤️
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Piggy. Congratulations on your wonderful accomplishment. Education is wasted on 20 year olds. You are a roll model for all of us.
Exbxgirl Enjoy your retirement. Retired 11 years ago. I thought the place would shut down and yet it continues without me. Best thing I ever did. Congratulationns
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Marie,
Thank you for your good wishes. I have no illusions that my school won’t be able to function without me. I leave behind many excellent teachers and support staff and have great confidence that my school will not only survive but thrive as it always has.
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exbrnxgrl - congrats on retiring! My hubs is retiring in November and we’re building a house to be 5 minutes from our grandkids. Can’t wait
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if I am reading this that you are 10 yrs with Stage 4. So wonderful to hear. I am not diagnosed yet but they found mass 1 to 2 cm in my lumbar 1
Also thought they saw a liver lesion on the spine mri. I haven't cried yet. I can hardly walk from the pain in my right leg.
I am thinking of everything And my leg keeps me pretty immobile
A few people say it could be benign but I can't find any info on that.
I am so happy to hear all the things you do.
Linda positive to strong (trying
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Linda,
I'm not sure who you are addressing, we have no “quote reply feature”but perhaps it was me. Yes, I have been stage IV for 10 years with no progression after initial tx. Regardless of what your situation turns out to be take it one day at a time because that's all any of us can do.
The stage IV forums are for those who have been dx'ed with mbc and the mods ask all members to respect that (see header) but if you have questions or concerns regarding possible mets please check out this thread: https://community.breastcancer.org/forum/8/topics/783594?page=170#post_5666679
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I know this is not specifically a place to rant but I must and it’s not bc related. I have just retired and will be 65 in September. I have noticed that a lot of my peers have become “old” not only in years but in a crazy backward looking way of viewing the world. This was particularly evident on a knitting forum I belonged to (not Ravelry, they are very forward looking!). As with bco, there are many threads devoted to things other than the main focus of the forum and most members skewed older rather than younger. Countless threads are devoted to things like terrible fashion, language, music, etc. among the young. Other threads trumpet the greatness of their or older generations, and of course youth and modern society are bad! Doctors are bad now, teachers are bad now, store clerks are bad etc. Only the way things were done when they were young are good. Sometimes dozens of pages are devoted to how awful generational change is!*Now, the reality is that I am not always thrilled with change either but… I was never told that life would remain the same. I assumed things would change. Isn’t that how we grow and develop as individuals, communities and society as a whole? And don’t even get me started on linguistic change! BTW, language is always in a state of change and that is what keeps it living. As far as I know no one says thee and thou anymore but language is very well equipped to handle change. Again, I don’t have to like change but I accept its inevitability.
The saddest part for me is that I find people who cling to the past to be the ones who truly get old and spend too much time looking backwards. My body may be old and it sure has taken hits due to bc, but my mind looks to the future not the past. I live in the here and now. Why do I feel like such an oddball among my peers?
* There we’re over 10 pages devoted to how awful the French tuck was (T-shirt or top only tucked into pants in the front). Young folks were roasted for it while many posters trumpeted the virtues of their neat and tidy style. Really? Did they truly believe that fashion/style would never change or that the young wouldn’t adopt styles that their elders didn’t like? I just don’t get why they thought life would never change
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I agree. My DH was stuck in the 60s. EVERYTHING was better then. Music, clothes, cars, food, all of it. Very resistant to any changes. Made it hard to live with him. While I have to admit I don’t like some of it, I keep my mouth shut as best I can, and keep on moving down the road.
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Yes, I keep quiet sometimes too. I always , from earliest memory, knew that most things in life changed over time and I also knew I might not like all those changes but change is inevitable. How do people not understand that? There’s been a fairly recent linguistic change that used to drive me up the wall but I noticed the last few times I heard it, it didn’t bother me as much. Adaptation, the key to survival !
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Congrats xbrnxgrl and piggie! So happy and proud for both of you.
I’m still working and decided to put myself forward for a promotion to lead the team I’m on. The senior leadership I work with know about my dx. I had to interview (I actually had to go through 10 interview conversations, as did the other final candidate) but I got the job! What makes it special is that I wanted this job and had the chance to go for it soon after I was dx. That was 4+ years ago.
I feel lucky to be able to work and that I’m stable for now. It keeps me motivated and focused. And it makes it possible for me to travel. Starting to plan for a safari and Italy in the next couple of years. Camping this summer :-
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Congratulations, Jen!!! Life is wonderful..
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jen, you should be very proud of yourself for getting that promotion! Congratulations! Ten interviews to get the position? Yow-za! I love and admire your perseverance and am so happy for you!!
Exbrnxgrl, I love the French tuck! (although I personally do not use it). I'm not sure if people stay stuck in the past since life seems to move forward these days at a more rapid pace than ever. Maybe they cling to the “olden days" to try to slow things down.
My beef with those who gloss over the past is they fail to remember the downsides of it. Take this meme that often appears on social media:
I have lots of arguments about this mindset. Maybe Grandma was only 50 years old but looked 70. Maybe she had breast cancer and had one of those horrific radical mastectomies that disfigured women back in the day before medical advancements. And of course, she suffered in silence because it was taboo to talk about. Maybe she only had the physical strength to sit around shucking peas and beans. Maybe she had been a Rosie the Riveter during WWII then had to return to domestic life when the men returned home and took back the good paying jobs. Grandma might have been worn out having lots of kids because there was no birth control. Maybe Grandpa was an alcoholic/womanizer/abusive spouse but Grandma was stuck staying with him because she had no income—married right out of high school because that's what society expected of women—and she couldn't get credit without a father or husband's signature.
But hey. Let's perpetuated the myth of a sweet little old passive lady who was content to let the mens go out and be heroes saving the world while she “knew her place" and didn't cause a ruckus. Just learned to be content with her lot.
Well, there are so many other wonderful advances we currently have and enjoy that weren't available way back when and people tend to forget it wasn't all peaches and cream—or green beans. Not to mention the more steeply entrenched racism and discrimination against gay people that was so prevalent in the past. We still must deal with it but there at least have been some advancements along those fronts.
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Jen - that is so wonderful to hear someone kicking ass and taking names at work, despite this crap illness! How exciting and affirming!
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Jen, Congrats on the promotion! And good for your supervisors for not ruling you out because of your dx.
Divine - I agree with you on all points, but I have to say I think what they miss is the easy intergenerational conversation that comes when doing that kind of time-consuming, low concentration task. Personally, I use knife for the job now, but I've done my share of snapping beans, shucking corn, and peeling potatoes for a large family as a kid.
For the record, I don't want to go back to the old ways, but I do think it's okay to reminisce about things past, while not longing for them to return. That's just a case of "the grass is always greener..."
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I get your point, SeeQ. These days, tho, so many grandparents are still very involved because they are helping raise their grandkids since both parents work. There is also a lot more parental involvement, especially by dads, than there was back in the day.
I think people sometimes get confused about the good old days. They see reruns of quaint sitcoms from the 1950s and 1960s and are tricked into believing they had the kind of childhood that someone like Opie did on the Andy Griffith show. I remind people (like my husband) that it was a series written by men whose fantasies included women who came to the breakfast table perfectly coifed in a dress (cinched in waist) and pearls after having cooked the bacon and eggs. The men wrote stories where life's troubles were so simple they could be resolved in 30 minutes time. Things like mental illness, drug addiction, and domestic abuse were never addressed. It was all very idyllic and there's nothing wrong with that as long as you keep in mind it was all fiction.
One subject from the “good old days" that I will always be angry about is how young pregnant women who were not married were utterly shamed and condemned, often sent away to have their babies and forced to give them up for adoption. Everything about it is horrific. Too many lives were altered forever because of the oppression and control of women, the suffocating religious morals of the time and the greed of people who profited from the adoption of innocent lives.
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So I apologize for going way far off topic from the original subject of this thread, which is that there is still life to be had after a stage iv diagnosis. Getting that diagnosis definitely taught me to live more in the present. Currently, I feel somewhat overwhelmingly grateful to be on this side of the pandemic after having slogged through it for over a year. I might even say I slugged through it, because all that marking time with so little availability of places to go made me feel like a slug! I still can’t quite wrap my head around pandemic restrictions being lifted. It seems almost too good to be true. I hated going though it but do believe I grew as a person during the process. It is great to be back at the public pool and we will see our grandkids for the first time in 1 1/2 years over the 4th of July weekend. On the other hand, I have some contentment that I did not have before. My heart feels full.0
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I agree that reminiscing is great but what I’m talking about is how some folks just carp endlessly about how just about everything is bad nowadays but was absolutely wonderful in their youth. BTW, as the grandmother of three, my grandchildren and I find lots of things to do together to promote love, conversation and, of course, spoiling! How we establish these deep connections changes, no bean snapping here, but there are many, many ways to do so! I am fortunate that all of my grands live close by and I am a regular part of their lives. Everything changes over time. It always has and always will and even our most fervent wishes won’t bring yesterday back.
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exbrngrl
Yes I was probably addressing you. Hard to remember everyone’s handle
Thanks for the thread
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Positive,
You are most welcome! Although I hope my situation gives people hope, the reality is that folks like myself are rare and no one, including our mo’s, knows why. My greatest wish is have them figure out why a very small number of us defy the statistics. Take care
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I can be wistful about the past at times, sure. It was once so vibrant where I live when the steel mills were booming, but that is a thing of the past and that makes me sad at times. I get nostalgic about the days my siblings and I seemed to have unlimited amounts of energy and were constantly on the go. I miss my parents who’ve both been gone almost 25 years now.
Life moves forward, tho. And just because there are constant newfangled things and ways of doing things does not mean I have to partake in all of them. I add what enhances my life or makes it easier and bypass those that don’t. I keep some things from the past that still serve me well. The thing about being in my 60s is I feel no pressure to explain myself, or apologize for my choices. As a “young” senior citizen, I’m proud that I adapt to new things and new ideas. It makes life much more interesting. I get bored with the same old same old over and over again.
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Camille,
Your attitude is healthy, normal and keeps you moving forward. My frustration is simply with those who complain, almost constantly, about how everything is awful now but was perfect during their youth. Unfortunately, despite their protests, life will advance and move on and some will be left behind simply for their refusal to move beyond what they were familiar with in their heyday. You don’t have to adapt to all changes but don’t shut the door on things that can enhance your life.
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exbrngrl
My ct scan showed Mets in bone, lung, and liver. All week I have had scans, liver biopsy, mri.
Tomorrow they will start radiation in my right leg
After the biopsy I will get the official diagnosis Onc said said briefly after pet scan there are many new therapies. I would get a shot and put on oral medicines
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I have been thinking about this for a long time. The truth is, I feel like an oddball in the bc world, not because of my lengthy survival but because my mental/emotional state seems to be completely different than most. From the moment I was dx'ed and even when a few short weeks after surgery when my bone met was found, I have never:
- sobbed for hours or days
- been angry about my dx. Why would I be angry ? No one promised me that I would be immune to serious ailments. For the record, I lead a healthy lifestyle before my dx but I never thought that guaranteed a lifetime of good health.
- had problems eating, sleeping or functioning in my everyday life (except for recovery from surgery and pneumothorax)
- said,"Why me?" or felt that having bc was unfair in any way or had ruined my life (Changed it? Yes. Ruined it? No).
I have never believed that I was guaranteed or promised anything in life, even if I was a good person. I have tried to make good choices but in the end I fully understand that sh*t happens and there will always be things we have no control over. I believe that despite my best efforts all kinds of things both good and bad can happen to me.
Am I really such an oddball? I'm certainly not saying that I like bc, but I have always believed that we can't control all aspects of life and as such, bad things are as likely to happen to me as they are to anyone.Lately, I have felt the weight of time lay heavy on my shoulders. I can't help but think that since I hit the 10 year mark, my clock is really ticking down. I have never “said” any of this out loud before but have thought about it for years because when people talk about sobbing, not eating/sleeping , being angry, etc. I wonder why I don’t feel those things. I am perfectly happy with the way I’ve dealt with bc but I really feel like an odd bird.
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Thanks to everyone who has posted. Ever since I got the diagnosis about 7 weeks ago, it's been rocky. Some tears, some relief, some fears, and lots of laughter and love. Every time I feel like I've adjusted to the new normal, some wrench is thrown into the works. I hope I can start feeling "stable" soon. It helps to read your stories.
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Exbrnx,
I don’t think you’re an oddball, I think you’re an absolute gift to those of us new to this bc life. Your longevity, optimism & wisdom have given so many of us hope & a chance to catch our breath at a really scary time. As you’ve said before, “don’t sell ourselves short”! Just because you’ve reached a major milestone doesn’t mean the clock is ticking down, it just means the milestones are a’changin… & we are all very grateful for that. Keep blazing the trail so the rest of us can follow you & be inspired by your healthy perspective.
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exbronxgirl - I don't think you're the oddball. I have dealt with this for only one year, but I haven't cried - maybe someday I will, but it doesn't help anything and I don't feel hopeless at this point.
Angry? No. Frustrated that I had all my annual exams, paid attention to my health and followed up when necessary, and I still ended up de novo Stage IV. But, whose fault would that be? With whom should I be angry? (Umm. It does tick me off when people infer that de novo means you didn't take care of yourself, get screened, etc... basically, it's your own fault. )
I did retire from my very stressful job, and it was the right thing for me, but my life isn't stopping. My energy goes to the more important things of family and health.
I don't allow myself to dwell in thoughts of things I *may* not get to see - what's the point in that? I'm going to do what I can, be where I can be, and worry about the rest later.
Ah, yes. The weight of time. I'd love to get 4+ years out of my first line treatment. I *think* that's feasible. I'd love to dance with Lt. Ned...I guess we'll just have to wait and see.
Oh...and I eat more desserts, because why the hell not?
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exbrnxgrl - I think your comment about not being promised anything is very perceptive. I once said “Some people are crushed because they believe nothing bad is ever going to happen to them, Me? I EXPECT bad things to happen, therefore I am never surprised”. 😂😂😂. Yes I exaggerated for the sake of humor, but at the heart of it, this is true. I’ve had my struggles in life and even though having terminal cancer is probably the worst thing ever happened to me, I am aware that it is still not the worst thing that COULD happen. So I still have plenty of gratitude for each day that I’m waking up and able to do all or most of what I would’ve been doing if I didn’t have cancer.
There’s an old song - “I Never Promised You A Rose Garden”. I think of it often. It was also a book and a film - not coincidentally, about a young woman’s struggle with mental illness.
Anger - yeah I’ve never really felt angry about my situation. Sadness, at times, yes. But who exactly would I be angry at? God? The Universe? Myself? Medicine for not having a cure? None of that would make sense to me. I also don’t feel like my body has been invaded by some “monster” or some evil outside force. I do hear people use that language sometimes and I do not relate to it. Yes this is a sneaky, vicious, unrelenting disease - but it’s my own cells, my own body, malfunctioning and going rogue. And that happens to all human bodies, eventually, in one way or another.
I will make one caveat and that is - I was diagnosed at age 59 and I was already prepared for the possibility of diseases of old age to start setting in. I am not sure what my state of mind would be if I was 35 or even younger and had to deal with a Stage IV diagnosis. I imagine it would be harder to accept and maybe I would feel “angry at God” in that situation. Also everyone deals with trauma/hardship in their own way. The important thing is to go THROUGH whatever you’re feeling and not stay stuck there.
Also, I haven’t struggled with constant pain and/or steady disease progression. So I can’t accurately predict how I’d feel if I was. Still, I don’t think I’d feel angry. “Who would I be angry at” still applies. Maybe just sad and of course, whatever comes up fromthe stress of dealing with the pain.0 -
Thank you all for your thoughts and kind words. I understand that part of my stay calm and do what needs to be done attitude is simply how I’m wired. I also understand that we are all different. For me it just boils down to understanding what I can change vs what I can’t change, and understanding my condition so I can move forward. I never get upset or mad that we don’t have better treatments or even a cure. For me that would be a total waste of my time and very emotionally stressful. Of course I want better meds and a cure but I have no ability to change that so I can’t get upset over it.
Am I too passive, too accepting of the status quo? I don’t think so. If a very emotional reaction could change things or make it all better I’d cry for days but it doesn’t. It just makes me feel worse and clouds my mind from learning the facts and moving on with what I need to do. If any of you have ever read Tacky the Penguin to your children (or read it yourself), I feel just like Tacky; an odd bird but a good one to have around!0
