Life does not end with a stage IV diagnosis (really!)
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I have purposely avoided this thread as I fully understand that it may be deemed insensitive by some ladies who have had to struggle with progression news one after another. To me, it treads on the same fine line as those who are offended by pink October festivities.
I have no doubt that Caryn's intention is good and this may indeed offer hope for the newly diagnosed.
During my first 4 years of being NED, I too had great quality of life and had the same optimism and positivity about Stage IV as Caryn. But I could also sense that some were quietly dismayed by my posts.
Then, I fell out of NED and had to struggle with the fear and disappointment of failing chemos and treatments, and I've realised how my then optimistic and well-intentioned encouraging posts might have been deemed insensitive. Thankfully I did not get any nasty PMs.
My point is, one will not likely truly understand the true extent of devastation and fear until she faces the first progression news and that failed chemo treatment. It doesn't ever get better with each progression news and I've since learnt to temper my posts with reality from my personal progression experience.
Grateful as I am about being 6.5 years out, admittedly it hasn't been an easy ride in the last 2.5 years.
ETA - the above said, with every NED and chemo break that I get, I now greedily grab and treasure every opportunity to enjoy the good life.
Peace out.
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Cheery,
Thank you for your post. You offer great insight in to the stage IV experience. I hope I have been clear about the fact that stage IV is not just a single experience. We need to be free to express ourselves regardless of where we're at with the disease. It can change in a heartbeat, so my optimism is always tempered by that reality. Am I being insensitive? I don't think so, unless one thinks that the stage IV forums are only for some types of stage IV.
Caryn
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So life goes on after diagnosis. We still have thing that have to be done. With the holidays coming up very soon I thought I would post a few hints to make holiday shopping easier. Rather than shlepping through the mall with packages I found that you can ask to have your purchases from one dept store (like Macy's) sent to their package pick up. I drive my car over to package pick up and sometimes one of the clerks will load my car for me.I don't like searching for the right size/item through the store's merchandise so sometimes I will place my order on line for store pick up. I just go into the store for pick up and my order is sitting there waiting for me.Some shops have policy that if your purchase is $100 or more there is free shipping so no shlepping,just have the stuff sent. In my state NJ one with a stage IV diagnosis can get a handicap card for the car with a note from your oncologist, car registration, drivers license and a visit to Motor Vehicles with your paper work. .The card will be mailed to you. Some of the best times for going to the mall is early when the stores open is easier or it seems to me around 4 or so on a weekday is a it quieter. at least in my area of mall land in Jersey along rt 17 and rt 4 and never on a Sunday cause we still have blue laws in Bergen County and the malls are closed. If anyone else has shopping hints I would like to hear them.
Charlotte
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I can understand both sides of this approach, exbrnxgrl's and cheery's.
I am one who's been stable to this point and have been inspired by those who continue to move forward and live a rather normal life. That's been a lifeline to me. Not only does that help me, but it helps my loved ones. They want to see me living with as much quality of life as possible. When all is said and done, I want them to feel good that I lived a full life.
I realize that could change at any time and I will see things differently, but I want to say that I hope I would still want others who are experiencing stability to make the most of it, have adventures, new experiences, as well as savor the simple pleasures in life. Yes, I'll feel down when I'm no longer in their shoes, because I'll be on a different trajectory then. I feel that way now about other people I know who have great health and are living a big, blow-out life with seemingly no cares. I mean, a woman I work with is in her 40s, got married for the 2nd time earlier this year, got pregnant and just had a baby this month! Oh, she also traveled to Jeruselem for vacation this past spring, has both parents still living and being a huge support to her, new husband has a great job, ect, ect, ect. Hmm, sometimes I think, some people have all the luck. But, that's just the way it goes. There are others worse off than me.
Sad to say, on this forum there is gloom and doom. Literally. That is part of the reality of stage iv. I have different threads marked to receive updates on posts. Yes, this one. Also the one on death and dying. Also the Angels thread. And more. It's the whole spectrum of emotions, don't you think? I am grateful there is such a wide range from which to draw insight . And we have a choice which ones to read and/or be updated on.
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DivineMrs M, Cheery and Caryn,Ditto to what you all have said. Like MrsM, I am currently doing well and so very grateful. But am well aware that the day will come when this will not be the case. I feel for others who are experiencing more of the challenges that come with cancer and stage 4. And am amazed that folks are still able grab on to moments to cherish. I take hope and support from all on this path and remind myself that we all have our challenges, some more difficult than others, but challenges none the less. And even if it is a difficult day, fights with teens, work, aches and pains I did not have before, I am here and living - the good, the bad and the ugly
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I stay positive with the help of my mom and this site. My mom is amazing. I rarely made plans because of the depression I've had all my life, just call me Eeyore. However, we currently have reservations for a 3 day spa experience in Berkeley Springs West Virginia this January AND a cruise along the Danube in the Spring. Yes, the Spring. OK. We did purchase travel insurance. Still, we are planning a major trip in the Spring. Take that Stage IV breast cancer!
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dunesleeper, I sometimes think I'd like to check out Berkeley Springs, too, as it's only about 4 hours from where I live. Have a wonderful time as well as on your cruise.
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dune- great attitude. You go girl ! Literally.
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dune sleeper,
We never know what the future will bring so it's wonderful to hear that you're making plans and enjoying life. I love trip planing and your river cruise sounds like there are many great things to plan. How often does the ship dock for port exploration? Good on you for buying the insurance. We still have to be practical
Caryn
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Caryn, there are 6 guided tours. We fly into Munich and they take us to Passau where we have a tour and board the ship. Then Linz and an excursion to Salzburg. Then Melk and tour. Then Durnstein and afternoon free time. Then Vienna and tour. Then Bratislava and city tour. Then Budapest and tour and afternoon free time. Then to Budapest airport and home. All onboard meals included AND complimentary wine and beer with meals.
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dune,ENJOY I love to hear about the travel adventures we all take.
Nel
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Hi there,
I am so thankful for this online community and especially this thread.I don't have bc, but my mom is stage IV (bones & liver) and since she is also new to the site but tired almost all the time, I am her voice on the site and I thought I'd share her story. She was originally diagnosed 20 years ago in 1994, it came back in 2004 and more recently in 2011. You would think that after two times of making appearances, that bc would leave her alone but as you know, there is no rhyme or reason more often than not. At the time of her IV diagnosis a few years ago, we were in complete shock and devastated. I am an only child, very close to her and I just had my first daughter. After the initial shock and the start of treatments, she seemed to be in a "good" place, thankfully, with minimal side effects from hormonal treatment (she is ER+) that kept her bone + liver mets stable and sometimes making them smaller. Her QOL for the first three years after that was almost as good as before.
Unfortunately, a few months ago, she was started experiencing some pain and changes to her body and her tumor markers went up. After a new chemo, her symptoms got worse and scans showed progression. Now she is on Taxotere and will be starting her second treatment of it on Thursday. She is losing her hair for the first time and my husband and dad have shaved their heads as well. For awhile she was having pain for months and we are thankful that the last week, the pain has subsided for the first time in a long time. Whether or not that means that the tumors are shrinking, only the scans will tell later on. Praying, hoping, fingers crossed that these tumors shrink.I know I am only a bystander when it comes to bc. My mom has faced this beast three times and when I think of the kind of person she is, so incredibly kind, patient, generous and just an incredibly human being - it really breaks my heart that she has had to go through this -- why so many of you have to. But I am equally grateful that cancer didn't take her the first time, the second time and that after three years of this third time, she is still here. And that little newborn I had during her IV diagnosis will be turning four next month, and my mom was also there for the births of our second & third daughters and maybe we'll even welcome a fourth in a year or two. I know cancer is so unpredictable for her and she can go from the valley to the mountaintop, back to the valley again. I love this site and the support that you give each other because it's so contagious! I am naturally a very anxious, worrisome "think the worst" type of person and this website has pointed me in the direction of hope and to look at the bright side.
Thank you all.
xo, Sarah0 -
Sarah, we're so sorry to hear everything that you mom has been through. She sounds like an incrediibly brave and wonderful woman and is lucky to have you supporting her through everything. Thank you so much for sharing her story here!
Sending huge hugs and best wishes to your mom, you and all you family
The mods.
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Hi Sarah,
Let me welcome you and your precious mother to BCO, and offer my support and prayers that her current treatment works to get her stable for many more years. Look around, ask questions or vent if you need to. You will find some very smart and very uplifting women here. Please keep us posted on you and your mother are doing.
Amy
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Sarah, I'm so sorry about your Mother, but I just have to tell you how impressed I am with your ability to write so eloquently about her situation. It is very sobering to know that she's been dealing with breast cancer since 1994, with those long gaps of NED in between each reoccurance.
l pray that your Mother will respond beautifully to the Taxotere, and that she will be with you and your family for a very long time. The hair loss can be tough because we suddenly look sick -- sicker than we often feel -- and it's great that she has such wonderful support from the men in her life. If you haven't already, you might want to take her wig shopping. Whether or not she gets one, just trying them on can provide some silliness and laughs to lighten her day. (((Hugs))) to you both! Deanna
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Moderators AmyQ dlb823
Thank you so much for your kind words & encouragement! Every kind & helpful word I've received on here has spoken life to me.
Whenever I think of what this online community has done for me, even after only being a member for a month, I am to the point of tears. I can't wait to finish up on this thread and catch up on your stories.Thank you all! And please, share on.
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Sarah, So sorry for what your mom is experiencing. She is so lucky to have such a loving family who support her. I have had lung mets for over years now. My Onc keeps me on a treatment til it quits working and then we move on to something else. I've been on a 3 mo break due to low blood counts but will have chemo on Wednesday. I started Carboplatin in April and will continue with that. Taxotere was great for me but I had to quit because the neuropathy in my fingers and toes was getting worse. I hope the taxotere is as good for your mom as it was for me! You will find many with stage iv BC that have been here as long as I have. Blessings, glenna
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Thank you so much GatorGal! What I do for her is a drop in the ocean for what she has done and been for me my whole life so I am truly so happy to be able to contribute any way I can.
That is so wonderful that Taxotere showed positive results for you and wishing only more successful treatments for you. I appreciate so much you sharing your story. I see that it has been six years from your stage IV diagnosis which is awesome!Happy thanksgiving & all the love and blessings.
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Sarah, just read your post and realized I left out the 6 years part. Just found out I will be starting abraxane on dec. 17th. It's another taxane (like taxotere) so I'm excited because I know how well I did on taxotere so I'm expecting good results!! My daughter is 33 and decided a few months ago that she needs a break from "our" family. She married in May so I guess she has a lot of adjusting to do with step-kids, new in-laws, etc. Our relationship has never been as close as I would have liked. I am so happy for your mom that she has you!
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So gator does that means she know about the cancer n choose tob away.
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yeah, she knows about the Cancer. honestly, she has a lot of emotional issues since being a foster child. We adopted her when she was nearly 6. She was in lots of different foster homes and has a detachment disorder. I don't blame her for her problems, just for not getting help .... And for blaming me for everything that is wrong with her life. I have a lot less stress in my life now that she is taking a break from us. lol
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Lol rad is really hard for the child n 4 the families.u know she doesnt want to b like that, she knows u love her, she is just scared.
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oh, I know she knows we love her. I just wish she would get some counseling. I think it would be helpful for her, especially in the long run
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Stuart Scott, an ESPN sportscaster,passed away from cancer today. Here is an inspiring quote from him:
""When you die, it does not mean that you lose to cancer," he said. "You beat cancer by how you live, why you live, and in the manner in which you live."
That's what I'm talking about ladies. That's how I thumb my nose at bc. May Mr. Scott rest in peace.
Caryn
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Always thinking of this thread, Caryn, not always doing it but I will continue to try. Praying for all of us to enjoy our days as best that we can.
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I really want to live fully and enjoy myself, but my depression did not go away when breast cancer came along. Certain things trigger me and then I'm in a painful place where it feels I will never escape. In reality most of those attacks last 3 days. Then I start pulling myself together. I feel so guilty about that now, because I'm not living well like that. And even though I actually want to die for those 3 days, the fact is that this thing could spread, I could get ill and suddenly die. And I have lived so poorly. I really have not done life well, and having just come out of one of those episodes, I need to force myself to get out of this house and do something, anything.
It's funny in a not so funny way. I want to do something to make my life count for something, for someone. I just don't know how. I've been depressed my whole life, so I really don't know what I like. Well, I hope I have enough time to work out that problem.
I should probably be writing this kind of stuff in my journal. I don't want to depress anyone. The idea behind this whole post is that I agree that we should be focusing on leading a good life, not that black hole where we wonder how long we have and what we need to do to prepare. Sure, some of that stuff should be sorted out, just like anyone; but we are alive and should act like it.
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so sad to lose another to cancer, of any kind. Dune--if I had to guess, I would say that caryn (not trying to be rude) is probably on the other end of the spectrum as far as her outward stance of how she is dealing with cancer. I think it's in her personality. Just like you have said your depression battle has been life long. We are all made up differently and so we are going to act and react differently. Please don't compare yourself to others. Always good to have a self awareness. That quote really hits home. Very inspiring. You never know which words of encouragement are going to strike a match within us and inspire hope and push us beyond our limitations. You take good care. Enjoy your next 3 days
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kmjones,
You are so right, a great deal of how I deal with bc has to do with my personality and how I have always dealt with life. So no, I don't think you're being rude in the least.
Dunesleeper,
I understand how crippling depression can be from seeing how it has effected family members. You do the best you can, avail yourself of resources to help and hope you get to a place where you can find peace and contentment. I don't mean for this thread to make others feel badly. I just wanted to offer my view and to help people understand that stage IV life is not the same for everyone and for some, it is possible to live a happy, fulfilling life.
I acknowledge that this is not possible for all,for a wide variety of reasons, but a stage IV dx need not mean that you automatically put a foot in the grave.
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dune, the thing about this forum is you don't have to be perky and positive all the time. Don't censor yourself worrying that your post might bring someone down. We are here for each other no matter what.
Your life does matter. You don't have to live a big, grand life filled with feeding the masses or finding a cure for illness or inventing the next big important thing to have purpose in life Today's culture can be misleading in that so many people are trying to find their 15 minutes of fame. It's okay to just be you. To ive a simple life, to appreciate the simple pleasures in life.
I feel like I can make a difference in every day life by thanking a store employee for their assistance, or complimenting someone on their appearance, or acknowledging someone's expertise, like the woman who works at the optometrist office who knows so much about eyewear and insurance and is always so personable about it.
I think you are too hard on yourself. Cut yourself some slack. Be good to you. It's okay to do that!
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Dune - I didn't understand depression until I had one. It is SO hard and difficult it's a black hole, almost cancer of the soul. Combined with this crappy disease makes it even harder, and as MrsM said we can't always be perky and positive on this forum. And luckily, we can share our feelings, emotions, sadness as well as the good and positive things in our lives without being judged by anyone. At the time, my shrink pushed me into joining a local support group and eventually and art therapy group where I met people in similar situations and some with other co-morbidity. It was a place where I could share my real feelings and was understood. Of course, my shrink prescribed appropriate medication that I still take to this day and that I will never stop. I met wonderful people and developed a friendship with 2 women which is still on-going and for which I am very grateful.
Life doesn't end with stage 4 but I think we have to adapt to this new reality, with our respective mental strengths and weaknesses, our physical limitations, our energy and pain levels and other health problems. I grieve my pre-stage 4 life and I think this grieving process is normal and healthy for me to be able to move on to something else. I've been seeing a psychologist for the past 6 years who helps me with my psychological issues and with whom I work through my spiritual quest (he is very opened to that). This spiritual quest has helped me deal with my stage 4 dx. And I listen to my body. If I don't feel well, I don't push too hard because I know I will pay for it! I lead a very quiet and simple life and take pleasure in small things, like knitting a scarf or preparing an excellent spaghetti sauce for my sister. Or couch potato....I have a lazy streak in me....When I feel good, I go out and socialize etc.
We all deal with this the best way we can. One day at a time.
Hugs - Linda
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