Life does not end with a stage IV diagnosis (really!)
Our sister, kayrnic, started a thread celebrating being 2 years (hooray!) out from her stage IV dx. I was thinking along those same lines when I read her post. So often, those newly dx'ed stage IV, think they've been handed an immediate death sentence and panic or plunge into some very dark places. This is understandable, as the dx is shocking and what will happen is a great unknown. After the initial shock wears off and you learn as much as you can about stage IV (knowledge really is power!), many of us discover that, though changed, life can be surprisingly...normal. Before I go further, I fully acknowledge that this is my experience. Others may have very different experiences and I am in no way marginalizing the difficulties they face.
So here is how my life has progressed since my stage IV dx (bone met), almost 3 years ago:
-I continue to work full time as a first grade teacher. I love it and for me, teaching is a calling.
- I walked my younger dd to the chuppah, when she married her lovely husband.
- Sadly, my mother became ill and passed away about 3 weeks after the wedding. I am grateful that I was able to spend most of the summer with my dad as we mourned my mother's passing.
- I have become a grandmother. My beautiful granddaughter will soon be 2 years old.
- I have taken a two week cruise (including very long flight) to New Zealand and Australia. At the end of the cruise, I climbed the Harbour Bridge in Sydney.
- I'll be going on a one week California Coastal Cruise in early April. Winery tour in Mexico, biking in San Diego are on the agenda so far.
My everyday life is largely unaffected by bc, though there is never a day when I don't think about it. I still have to get my port flushed (not on IV tx, but I'm not having it removed, for obvious reasons) . More doctor visits than I'd like, and waking up feeling stiff as a board each day, due to Arimidex. I do tire more easily, but I have the luxury of lots of quiet time when work is done since my children are grown. Let me be clear, I am not bragging about how great my life is or how "easy" stage IV is. I just want others, particularly those just dx'ed with mets, to understand that you could very well have a fairly normal life for some time to come. Lastly, never, ever discount the power of anti-anxiety or antidepressant meds if you need them. I have been on Effexor since my dx and wouldn't be without it. I have no se's from it and it hasn't dulled or numbed me in anyway. I also keep Ativan on hand to use as needed. Breast cancer will be the end for the vast majority of us stage IV ladies, someday. Don't let it steal your life one day sooner than it has to.
Fondly, Caryn
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thank you for sharing! I too have had similar thoughts recently. It has taken me a while to get here. My kids keep me going and I will continue to love my life, every day, every moment. I hope you continue to enjoy your teaching, your daughter and grandchild, and your upcoming cruise! I have to add, along with anti-anxiety/depression meds, sunshine sure helps me
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I agree so much with what you both have to say and your attitudes to life. I feel that too many of us start to die the moment we receive the Stage IV diagnosis. My diagnosis is less than a year old, but as long as I am not suffering too much I resent giving cancer a power and authority it doesn't deserve. I am assuming that my death will only come after my oncologist tells me that I have gone through his entire arsenal of treatments, and not before. Until then I intend to live well and enjoy myself.
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Amen Caryn! You were one of the first that really helped me when I was diagnosed because you had a similar diagnosis and were a year ahead of me! It was truly the most important gift when I was diagnosed......to hear from others in my situation and know that it is possible to live beyond diagnosis for many years. I know we have a lot of "lurkers" and even though they don't post, I am sure that our stories help them. That is why I continue to check the boards and faithfully participate! I hope I am helping another woman in our situation......even if I don't know it!
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Good post Caryn. It is great to hear that your life hasn't changed drastically. Mazel-Tov on your daughter's wedding and getting to meet your grandchild. I am also 2 years from the dx. Although I am no longer working, my life hasn't changed that much. Right now what keeps me occupied is my daughter's upcoming wedding. I always thought that she would have a nice small intimate wedding, like mine was. I was wrong her wedding is growing bigger every day, but I am having fun with all the planning and details involved. I just hope that Nana can hold out and enjoy it with us (Nana is 94) Between this board and Gilda's Club I have found tons of support.
Charlotte
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Thanks for such upbeat posts! I just had my scans done this week and got the all clear. It's been almost 2 years since my brain met and life goes on as before. It's true that I do think about being stage 4 and wonder if and when something is coming back, but for now I know I'm fine. I did end up with some minor cognitive issues from the Stereotactic radiation, but it could also be that I just turned 60, otherwise no complaints. Hopefully these posts will give confidence and hope to those newly diagnosed that death is not right around the corner. I really feel that no one can ever give you any kind of timeline!
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Charlotte,
Wishing you lots of nachas on the upcoming wedding. My dd wanted a big wedding from the start and as a matter of fact, we had her engagement party about two weeks after my dx, so the planing took almost two years. My dd's called my mother Nana too. I am so happy that my mother was there and that she got to meet my granddaughter, her first great grandchild. My parents also stayed for a week after the wedding so I had that time with my mom (let's face it, she really only interested in the baby!)
Embmom,
Good for you! I don't want to sound falsely upbeat (although, I am by nature, quite positive) but darned if I'm going to give bc anything more than I absolutely have to!
Caryn
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Wish I could hit the "Like" button.
Very uplifting post. Thanks for sharing.
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Thank you all for these uplifting messages. I just learned after hitting the 3+ year of recovery from Stage 2 TNBC, that they have discovered 2 small lung mets. I had a CT for some what I thought were stomach issues and was knocked off my feet by what the CT scans saw that were later confirmed on a PET scan. Cant seem to wrap my brain around or make my lips say the words Stage IV. I feel that I am in a slow motion bad movie right now.
Had a lung biopsy on Thursday, and will see my onc on Tuesday. Trying not to plan my funeral but wondering how much longer I have. I am trying to focus on the present (I actually feel pretty okay), and once I hear the prognosis on Tuesday, at least we will start a plan of attack - attack being the operative word.
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I'm about a week and a half out of hearing the official IV news and I've been finding a lot of encouragement from so many of you on so many threads. This one is so good and means a lot. Thanks, Caryn for starting it and thanks to everyone who has and will continue to contribute to it.
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I hope you don't mind me posting here this once, but I wanted to share some stories I've recently heard along this topic. My friend Traci's mom had bc bone mets for 14 years before dying suddenly from a brain aneurism. One of my boyfriend's coworker's mother has had bc mets to various parts of her body (including multiple organs) for 20 years, and she still has a good quality of life (she's mean as a snake, though, according to the coworker!). Indeed, one can live for many years...and someday die of something else entirely.
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Thanks, Celtic spirit,
It's always good to hear those stories. Sadly, that kind of longevity will only be the reality for a tiny (really tiny) fraction of us stage IV gals. My point is that you don't need to lay down and die the minute you get the dx. You probably won't get 20 years, but you may get far more years than you think. Now, if we could only figure why those outliers get so many years...
Caryn
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Yep, just over my 6th year with stage 4 from the get go. That first year can be tough but more and more are making good long term survival (if you want to call it that). With really good quality of life too.
In some ways I am better off now than I was before this all happened. I would take never having to deal with this in a heartbeat, but I have become more aware of all the good things in my life, discarded what I don't need, both in people and possessions, chosen to do more, enjoy more, laugh more and deliberately chosen to be true to myself and not what others think or say. I don't think I would have been as decisive if not for the cancer. I'm not prepared to give cancer credit for anything but it is truly a wake up call to get stuck in and live this life we have been given. There is that saying; "It's not the years in the life but the life in the years". My life may be shorter than some people's but there is going to be plenty of living done in those years.
Moira
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I have just finished my 50th 28-day block of treatment, which is 3 years, 10 months for those that have no interest in dividing by 28. I am still here. I have paid a high price for my health. For me, every treatment has had a cost. I can no longer play the violin, much less professionally. For the first time since I was 14, I am not a union member. My heart cries for that loss. There are others, mostly medical.
I still work [not as a violinist] full time. Last month I billed out 150 hrs and that was a short month. After a time with a foggy brain, that seems to be back, and I am once again keeping up with the rapid tech changes happening in my field. I make dinner for a variety of people every night. Tonight I made a meat braise, with freshly made papparadelle. I have seen my daughter graduate with her master degree and start her doctorate. I am still here to help my husband navigate the world as he looses his memory [slowly] to Alzheimer's.
My life is still just a life. There are good days, there are bad days, and rarely do I gauge what type of day I have had using my cancer. I try to find a reason to laugh every day
I am realistic. I know this is not how it will always be. I don't look too far ahead. I don't look backwards. It is, what it is.
*susan*
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March 11th will be 3 years since my stage IV diagnosis. I had mets to my bones only until November, when we found mets in my liver. I still work full time. I started barrel racing, and have won a couple buckles! This year my 20 y/o horse and I are going to concentrate on the ranch horse and english riding classes and not quite so much of the barrel racing. We're both getting too old and too fat! I went ziplining and whitewater rafting last summer and plan to go again this summer. Hubby and I upgraded from our small fifthwheel camper to a larger one. we are planning a lot of short trips this year.
I have had side effects, and side effects from the side effects! Right now I'm having trouble with my lungs from chemo toxicity. But overall I have had great quality of life and I figure I'll be around a bit longer.
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Chele,
I was also diagnosed with mets three years ago on March 11. And it's my birthday! I just had a CT scan on Friday and I'm hoping to have good news before my DH and I go out to celebrate my 65th birthday and 3rd cancerversary. I've been stable on anastrozole all this time, my last tumor markers were nearly normal, and I'm feeling good, so I hope there will be no unpleasant surprises.
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The first year was so difficult for me, physically, mentally, emotionally. I've been stable for over three years now and that contributes to my peace of mind. Can't say how I'll handle it when progression happens.
These days, tho, I really find myself enjoying life on many levels. It's not even just the fun stuff. I still have issues that come up from time to time that I have to grapple with that are not in any way cancer related, but I find satisfaction in figuring out solutions to life's struggles.
I still get a wave of anxiety several times a day but have learned to get busy and it quickly passes. I take anti-anxiety meds that help enormously. It took me awhile working with the doctor to find one that was right for me, but well worth the effort.
Last year there was a commercial on TV for a retirement fund. It showed a woman who retired around age 65 and she kept doing all kinds of fun things like traveling, skydiving, ect (because she had a nice retirement fund) and anyway, it said something like 'she forgot to die because she was having so much fun.' Sometimes I think, hmm...maybe that's what I'm gonna do...forget.....
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Thank you, Caryn! I always appreciate your wise words. I passed the four year mark in Jan., and I continue to be very active. I will go, go, go, until I can't. I count my blessings everyday.
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Caryn, what a powerful post and one that is sure to calm the hearts of newly diagnosed ladies. I am thrilled to hear that so many Stage IV ladies have started or are continuing to live life adventurously. (I have climbed the Sydney Harbour bridge too. I'm terrified of heights and proud of myself).
My life has changed dramatically and I am unable to work or have my normal "busy" life. But I am happy, probably happier than I've been in my life. Since December I've been able to resume taking care of my son (I have shared custody with his dad). If I was working I would not have as much time to be with my son. That means so much to me.
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Love to hear from all of you embracing life with stage IV. Some days I actually forget that I have stage IV cancer and I'm grateful to be able to be here for my teenage son. I don't take a moment for granted.
Terri
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Carpe diem, how odd! That we were diagnosed on the same day! I sure hope you get great news. Congratulations on doing so well! Happy Birthday too
That sounds like a good plan Divine! I'm going to forget to die too!
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Caryn
Good post. Once you realize that being in treatment for life doesn't mean you are tethered to an IV pole, you can accept it and life around it. I too feel very fortunate to have been able to continue working full time and carrying on outside of work. The times in chemo were not easy but even during that time I took my kids on vacation to Florida and we went on a day long jet ski tour all down the coast and saw so much sealife. Since then we have been on back to Florida twice, went to stay in the Smokey Mountains, rented a cabin in the Michigan UP, and so many other weekend trips. I walk around like a very normal person and you wouldn't guess I have stage IV cancer. I went to a new kickboxing glass on Saturday morning and felt very proud to have kept up the entire time. I think about cancer tough every day and it touches my life still way too often but I am a whole person living a very complete and happy life. I have an infusion today as I have done every three weeks now for nearly 6 years. but it has become as much a part of my life as anything else. No one around me can really tell (I may be kidding myself here) that I suffer cognitively .. a left over side effect from chemo that never went away, or that it takes a good five minutes for me to get out of bed and unstiffen or that my nose drips continuously, etc. etc.
I know many do not have it this good but part of it is the attitude you take. I look at Janis (Fitztwins) and this woman has not let it stop her from living it up and I know she has done the chemo circuit many times just like the ladies about.
Jennifer
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Caryn, well said.......it is important for the newly dx to know that every day can be pretty normal once they get their head around the fact that they are not going to die soon.
Everyday should be lived and enjoyed to the fullest measure.............there is no need to sit and wait for death to tap you on the shoulder .......make it chase you for as long as possible!
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hello,
I don't have cancer just at risk, so I feel guilty for posting. I have extreme health anxiety after cancer scars and I would like to say that what I am hearing is lifting my anxiety.
I would like to thank you all from the bottom of my heart for what I have read above here.
I wish you all many years of happiness to come
Regards
Alicki
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Caryn you are lucky and blessed with a low grade unaggressive highly ER+ breast cancer. (How many folks are grade 1 and stay grade 1?) You tolerate the AI's (arimidex) easily. Wish that it was so for the rest of us. I had absolutely no quality of life on arimidex. Frankly I would just assume being dead then take it.
I hope your post helps the newly diagnosed stage 4. It may give them hope, which can't hurt. I wonder what percentage of BC patients fit your case?
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rose valley,
I am very sorry if my post upset you in any way. I hope I was clear that what I was saying was my experience and I do acknowledge that things are much tougher for others. My intention was to let the newly dx'ed with stage IV know that there was a chance that they could have a good QOL, at least for longer than they might have imagined. Yes, I realize that I am lucky. My apologies again.
Caryn
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Well said, Caryn.. Hopeful but also realistic. I especially agree with your comment of not letting it steal your life any sooner than it has to.
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You did not upset me, no need to apologize. I wonder though if when your case is unusually favorable, if it doesn't paint an unreasonable picture of "false hope." Don't we all wish to be the Lance Armstrong who was given 2% chance of beating his metastasized testicular cancer and did?
None of us can tell when our time is up or when treatment is likely to stop being effective. We are learning to be comfortable with uncertainty because that is how life is. Picking up and moving forward with the life we have is our job. The job will change over time, just like we all change as we age. Nothing is static. All anyone can do is continue on living life, potholes and all.
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I myself, have no false hope. I realize the possibility for living a normal lifespan is minuscule, but I will not let that prevent me from enjoying life while I can. On the other hand, I don't know that I won't be in that 1-2% (I was in the 1% who got a lung puncture during port installation!). At the risk of sounding redundant, I just wanted folks to realize that they need to live and enjoy the time they have and don't put one foot in the grave a minute sooner than they have to.
Caryn
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And the point was well taken. I admit it was a thread that I immediately ignored since I am no longer living well with this...quality of life has severely tanked. However I did get three good years of living pretty well with it and I can't forget that. Some get much less.
The best friend of my sister in law got cancer..not breast...a few years back. Here I was ready to initiate her to the ropes regarding chemo, SEs, and all the rest. I was taken aback when she died within months of diagnosis. I expected she'd somehow follow my same path. At least for a little while.
But however long she had, I hope she lived it...potholes and all as you said, Rosevalley.
It saddens me when I see so many on here fret over every scan. Any excessive worry over something you are powerless to change needlessly robs you of living life right now.
And I'm glad I opened the thread and read it. I think you did a good job of being hopeful without being unrealistic. Not that you needed my stamp of approval.
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The other piece of the giving "false hope" issue is that all anyone has to do is look at the stats ( yes, they are outdated aggregates ) to know that most of us are not looking at 10+ years. If you want to pin all of your hopes and dreams on a 1-2% chance that you'll beat the odds, that is your right. I also wanted folks to know that although this is my experience, it is a possible stage IV experience. Perhaps folks can then understand that stage IV contains many variations, not just the one that says go directly to the graveyard, don't pass go, don't have a decent QOL. I really, really don't mean to marginalize anyone who is having a tough time, as that is just as surely a part of stage IV (and everything in between) as my experience is.
Caryn
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