Life does not end with a stage IV diagnosis (really!)
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GG, interesting observation from that interviewer, interesting study as well.
I remember calling my local chapter of the American Cancer Society or something like it, a few months after I was diagnosed. I forget what kind of information I was even looking for. I was connected to a woman in charge of many of their services. I knew this because she often had her picture in the paper for the cancer center.
She asked me a few well-informed questions. What I remember most was when she asked if I knew what stage cancer I had. I got quiet for a moment, then whispered, "stage iv."
This woman said, "Okay. Now, I just heard you stop and say stage iv in a very sad way, but I want to tell you, I see people with stage iv cancer who come into the cancer center and they have smiles on their faces!" And she went on to encourage me in a matter-of-fact way. Of course, I thought she was out of her mind. How could that be true? People being upbeat even with stage iv cancer? I know her words planted a seed in my heart, and I never forgot them.
I feel that women, especially when first diagnosed, are helped by seeing the words, life does not end with a stage iv dx. They are helped by reading our experiences. We all benefit.
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Wow, what a great story, Divine! Isn't it interesting how a comment or even a facial expression can influence our emotional well-being, and even, I believe, at times our prognosis? That's one reason I think it's so important that we have oncologists who have a genuinely hopeful outlook.
Your story made me recall when I was first dx'd with Stage II bc in 2008, a wonderful PA at UCLA -- a bc survivor herself who had gone back to work in bc patient care -- commented that many women with bc actually end up doing something very positive with their dx. Her exact words were, "Who knows, maybe you'll become an advocate or something." It was said very matter-of-factly, but I remember the switch in my head flipping from tears and sadness to suddenly feeling much more positive and open to the future.
Isn't it wonderful how these angels appear when we need them?!
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I Agree, great story Divine!
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Divine and Deanna, that is so true. Just seeing words in this title or hearing the positive stories of others or having an upbeat response by your Onc. All of these things can make such a difference in my attitude and how my week goes. When I encounter one of these "angels" my heart swells with gratitude for the gift.
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I had forgotten about this til reading your stories. My PCP told me that he had cancer 30 years ago & was told that he should get his affairs in order.... he is still working. When I asked him about MM, he said, "oh we have way better drugs now" "when I had cancer it was the only thing I had to take care of the nausea" My mouth hung open as he's the most straight laced, I couldn't believe he told me that. I didn't ask where he got it from, but sometimes I really want to.
Then one of the onco's that I had told me he had an inoperative brain tumor when he was in his 20's, again he was told to put his affairs in order, still working 25+ years later.
Anyway, they are two of the most upbeat & fun people that I know.
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Hooray to enjoying life, whether that's for one week, one year or ten. I think it is a huge surprise to realize that some, maybe more than we know, are living with MBC and living well. This is not marginalizing the pain and suffering of so many with MBC, but those who are newly diagnosed need know that it's not necessarily an immediate death sentence.
sureris, you make a good point with respect to age. I imagine that those of us who are older, have raised children, seen grandchildren born etc., have less of an emotional burden and less worry over the future of our survivors. That certainly makes it easier for me to enjoy every day, knowing my children are happy, productive adults. They will grieve when I pass away, but I have no worries about them coping with my death. Being in this position while your kids are still young must be very difficult.
For now, however, I salute you all and say l'chaim (to life)!
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Although I didn't find BCO and threads like this one until a few years after my stage IV diagnosis, I did have an onc who told me I could live 10 years or more with stage IV. Truthfully, I didn't believe him. My experience with a cancer support group in the late 80's when I was dealing with my first BC told me otherwise. My youngest son, who was about 6 or 7 at the time, actually asked me if all my friends died. That was when I knew I had to leave that support group and get back to my healthier friends. What I took away was that stage IV or a recurrence meant certain death. So naturally when I was diagnosed 20 years later, that's where my thoughts went. Thank God for my onc who has always been positive (and yes, he was my onc in 1987), thanks for all the researchers and doctors and the advances that have been made, and thanks for the brave men and women who agree to join research studies so others can benefit. And it is true, life does not end with a stage IV diagnosis (really!).
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Although I have only been dx for six months, there is an experience that I would like to,share.
My Dh and I were sitting in the waiting room at my mo's office. I was to have my first zometa infusion.
I was feeling very scared and insecure, probably white as a sheet.
A woman came to me out of no where and gave me a hug. As she embraced me, she said" I don't know how sick you are, but God told me to come to you and tell you that you are going to be ok".
It meant the world to me! And I have never seen her again. Perhaps she was an angel.
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Also my mo said something that really sticks with me. He said " Withyour will and my skill, you will live many good years"!
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It is reassuring to read your experiences, whether an oncologist or a random person offers us hope, we are open to it and receive it.
Being hopeful doesn't mean I am giddy or carefree. The disease did steal some of my peace of mind and part of me was forever changed. While I acknowledge this, I try not to dwell on it. I still have a good life, can make myself laugh, can be made to laugh by others, can still enjoy the big and little things, appreciative that I am still here to grapple with the complexities of life.
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When I see my ONC I talk about Breast Cancer.org all the time. I tell her how uplifting the messages. We all have our down moments or days...but the upbeat attitude that so many have on these discussion boards helps so much. I am one of those that moves on after given bad news. Yes I have had a few pitty parties but I don't stay at the party very long. I can remember when my daughter told my step daughter (both grown women) that I had stage IV breast cancer...my step daughter asked her how I was doing emotionally. My daughter told her...she will actually lift your spirits about this. She told her how I had a positive outlook on life.
I truly believe that our mindset really makes a difference in how we feel. I know there may be a day in the distant future that I can't do.....but for now I can do and boy am I living. Living more than I did before my diagnosis.
I feel blessed to have all of you on these discussion boards so we can chat about our ups and downs...ask questions that only another person with Stage IV BC would be able to answer.
Thank you all!!
Julie
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Thanks Gator and Chelle, I had a rather rotten day today and needed that. After feeling some new pains i let myself spiral down for awhile. Feeling better now and have to remember how many people have gone through 10X more than me and are still living well. I do not know what i would do without the help and support of all you amazing women!
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After the mets diagnosis I had a time of mourning for the loss of the future I had thought I would have, for the health I had lost, for the effects on my family. Now hope is more in my thoughts than grief, though of course I have my moments. I have embraced my "inner hedonist" and am out to enjoy life. The amazing people here on the stage iv forum have been a big part of that.
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I was diagnosed Stage IV January 2007. I'm still here. Taking care of my little dog.
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It has been less than a year since my dx, and life certainly has gone on. It is amazing how normal things around me remained in spite of the sudden dramatic change in my life. Good things happened, and bad things happened. My grandchildren lost teeth and grew new ones, played sports, went to school, gave me lots of hugs and kisses, continued to be dear to me. The summer came and went. I nurtured my garden and fought off the deer who love to eat the plants. The Red Sox were terrible. The fall was beautiful and was followed by winter, just like any other year. The Patriots had a good season. The Bruins continue to play. I was blessed with a new granddaughter. My husband was diagnosed with cancer 6 months after my dx. He has had complications from his surgery and has spent 61/2 weeks in the hospital. He is now home and looking so much better. He is still the love of my life. Our plans for a trip to Hawaii have been put on hold, but we WILL go. The politicians invaded NH for the primary. Oh, here I have to say that things do not seem quite normal. Is it just me or is this one scary, bizarre political year? Spring will soon follow winter and life goes on.
I have try to remain positive and have not made many changes in my life. I do take more time to enjoy my family and remember to give hugs and kisses and say "I love you" often. I smile more. I appreciate things I see and do more than I used to. I pray often for people I know and for those I have met on these board, in the hospital, and at my cancer center.
I thought that I had adjusted pretty well to my stage IV diagnosis. Today I learned that my onc is leaving the cancer center where I receive treatment. Today I learned how fragile my sense of coping well really is. I was devasted by the news. I did not take it in stride as I thought I would. My onc has become part of my new life, part of what keeps me going, part of what gives me strength, part of what makes me appear to be handling things so well. I depend on him. I had a melt down. I told my DH that it probably didn't matter because no one is going to cure me anyway. Did I really believe that it doesn't matter? WHAT THE HECK HAPPENED TO ME? My reaction was a shock to me. I have to take stock of my feelings and figure out who I really am. I am hoping that I am that strong woman I thought I was and can make it past this bump in the road. Am I normal?
I will go on. Hopefully, I will have fewer stressful events in the future. Right now I need a break from all of it. At any rate, there is lots of life after stage IV dx......life goes on.
Lynne
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Very true 50sgirl, Life does just keep moving all around us. All the regular stuff good and bad. Which does create a comforting sense of normalcy. Most days I do pretty OK just living my normal life with hope and optimism. However, i also feel that fragile sense of well being and every so often something I can't even name shatters that. Thankfully I am still feeling quite well. I am trying to do things that make me happy. But I still need to work full time, doing the same old routine like making dinner, paying bills. That can cause me to feel that proverbial clock ticking away and I feel like I should be doing something more epic like traveling to places I've never been (Paris!), creating some dazzling art work, hiking the Immigrant Trail, finishing photo albums for my kids. Everyday I feel pulled in 2 by obligations vs desires. It creates a certain urgency/anxiety in me. I know I won't live forever and probably not even as long as I optimistically expected, but I sure do hope I have at least enough years to finish up some things that matter to me. I feel so much empathy for those of you who are dealing with more than one medical crisis in your family and really am astounded at how you cope. I am so glad your DH is feeling better 50's! And congrats on a new grand child you lucky woman! I'm so sorry about your Onc leaving. Of course that is an event that would devastate anyone. You grow to trust and depend on them and to have it ripped out from under you stinks! You are very normal..... And yes, this election cycle is quite BIZARRE! Thanks for that post cnanthia! Good news is always GREAT news!
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50s girl, so sorry your husband is also dealing with illness. Your assessment of a year in your life is so interesting. It's just amazing what one year brings. Getting the boat rocked by your onc leaving, it's understandable that you are upset. That's been a lifeline to you. Please trust that you will find another competent onc as you move forward. My gosh, you have had the rug pulled out from under you so many times in such a short time. Special prayers for you as you deal with it all.
Artist, I think you should focus on one of those epic adventures and see if you can make it happen. Write down all the different things you hope to do in a notebook. Pick one that has a good probability of panning out. Figure out how to get it to materialize. I'd always wanted to visit New York City, so I researched and figured the most cost effective way to do that was for dh and I to take an eight hour megabus trip there for the weekend. We visited many places like the Empire State Building and the 9/11 Memorial all in two days. Part of the fun was in the planning.
That said, please don't minimize that fact that you continue to live a responsible life on a daily basis. You provide for your family and make sure your household runs smoothly. There is beauty in taking care of your loved ones that way.
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chelleg that's so amazing. I have been wanting to hear those words for almost 5 years. Believe she was an angel!!
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Divine, as usual you have some great words to impart! My DH and I have been talking about some trips we can take soon. We are contemplating putting up our house for sale this spring and downsizing which will free up some time and money too. A little overwhelming to think of packing and moving to a smaller place, but exciting as well. I think part of my woes are that all my life I have been a frustrated artist due to lack of time and money. Now that the kids are raised and out and we were doing fairly well financially I was finally going to make the time to indulge my passion! I know I still can, it's just been a struggle to get started. Anyway, you are right that I should focus and make a plan! That is the only way it WILL happen and give me something to look forward to. And thank you so much for pointing out that the everyday things I do for my family count for a lot. I needed to hear that so much. You are a fountain of wisdom that I greatly admire! Julie, I like your outlook and I feel like I am living more authentic life after Dx. Happy weekend all, I'm going to go make some earrings!
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Hi all,
Totally off topic, but...life does go on. The year I was diagnosed, they had the first Otaki Kite Festival (Otaki is a town). I was on crutches, having just had the pin put in my leg. There were about 6 big kites, one food stall (which ran out of food) and maybe 500 people. At the time, I figured I'd never see another one (they're once a year).
This year....probably 40 big kites, and literally thousands of people, lots of food and trinket vendors, etc. My husband took some great photos of the kites yesterday. Hoping for blue skies today and more photos. His photos are at:
http://s1286.photobucket.com/user/pixelsaurus1/lib...
Lynne - I thought I was coping well at the end of Year 1, and I probably was. But still pretty damn fragile - more than I realised. Losing your trusted MO would rattle anyone. My MO keeps me sane and optimistic. At Year 3, it takes more to rattle me. You do get stronger with time and more used to living with the disease. But you've been though so much - your dx, your husband's illness, etc. Life does go on - babies are born, friends pass away, the seasons change. Some days are a joy, some days it's hard to put one foot in front of the other. I'm hoping and praying that your coming years are less challenging!
Mrs M - Well said!
Artist - go for it!
Sorry I'm so far behind in reading everything, but I think of you all and wish everyone a lovely day!
Terre
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Terre, The photos took my breath away. What an amazing thing too see. It is way beyond my expectations. Of course, I have never seen so many kites in one place before. I truly want to be there to witness it in person. Thank you for the link to the pictures.
Lynne
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Kiwi, what a great story about the kite festival and how it has grown.....and how you've gotten to see its growth.....
Artist, NYC was my first trip after dx back in 2012. That gave me confidence and desire to plan more, which I've done consistently, one trip at a time. Over the past five years, I've gotten around to visit many places I always wanted to see. As I focus, plan and execute one trip, I have an idea for another one brewing in my head. My husband asks questions sometimes about how will we do this or that and my answer is, "I don't know, I've never done this before and I'm figuring it out as I go." Through this, I have developed a little bit of an adventurous spirit.
I've been to visit the Grand Canyon, Hoover Dam, taken my son to Virginia to see where my husband and I got married, swung by Monticello on the way home and took a tour of the place, drove part of Skyline Drive in the Blue Ridge Mountains (imo, the most beautiful scenery in the U.S.) and numerous other places. This year dh and I will take a bus trip to the Blue Ridge Mountains; I so look forward to it.
We also like trying new things within an hour or two around home such as a park when they had thousands of tulips blooming in the spring, toured a former state penitentiary, visited a restored train depot and took a Segway tour with my son which was magical. Sometimes we do things and they are real duds! But we laugh when that happens and just say, "meh. at least we tried it!"
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Terre love the pics your husband definitely has the eye. As I near my one year anniversary I try instead of thinking of all I've lost to what I've gained. You ladies pegged it, life does go on either we are a part of it or we aren't. I have spent so much time crying I sometimes feel like there are no tears left. Then I have a bad day and voila the reserves are replenished . But the good days out weigh the bad and now those good days are so damn good I wish I would have thought this way before. I'm still dismantling my old life ie selling the farm , my precious horses that I can no longer ride my old life. I need to find some new interests maybe painting pictures of horses instead. I see now a future for me ..different from what I expected but good nevertheless. Cheers ladies to us🍾 for being all that we are.
Wendy
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Terre, thanks for the pics of the kite festival. Reminds me of one on the Oregon Coast (can't remember which town)
We also plan ahead, we are heading to the Okanagan for a few days in the spring & then our big trip to drive across Canada in late summer. My MO is such a buzzkill, she told me to make sure I had cancellation insurance!!?? What a "b" If I need to fly home, that's what I'll do, but I'm not going to not do the trip just in case something happens.
We are planning to go ziplining, neither of us have been, so that should be fun. Nothing too crazy but I don't want to have any regrets of "woulda, coulda, shoulda" cheers, Dee
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GG, I'm not sure I have it in me to try zip lining but it seems pretty cool.
The funny thing is, now, after traveling more and trying new things for several years, I'm often content to just be home. I don't need to go as much as before. I'd stopped flower gardening for three or four years after dx and the weeds took over. Then, a summer or two ago, I decided to get back into it and have enjoyed it more than ever ( tho it's hard on my body). It seemed to help that I took a break and allowed myself to get away for awhile.0 -
Greetings from very rainy Northern CA (and we despartely need this rain). I started the day with a visit to a travel show. Rick Steves spoke and was ok but I generally find him dull. Samantha Brown spoke after him and she was wonderful. Her views on why we travel and what travel does for the soul parallel my own. After collecting mounds of brochures, reusable bags, pens and other freebies, we stopped for hot jasmine pearl tea. Then it was off to pick up older dd and granddaughter to go shopping for food for younger dd's baby shower, which is tomorrow. Ran home to walk my dogs and then went to pick up the cake. Rushed back home to dress for my school's big fundraiser this evening. Finally home and completely pooped. I'm looking forward to the shower tomorrow and can't believe that baby Miles will be here in a bit more than a month.
As for travel, that wasn't changed by bc. I always loved to roam the world (thanks to the Peace Corps and Pan Am) I used to think I would love to sell my house, buy a small condo near the airport and travel as much as I could. I still have a long list of places to go, but those grandchildren are keeping me closer to home. Can't wait until they get old enough to take them on trips!0 -
Terre, Those pictures are so great! I love anything colorful but to see it all flying high is pretty cool. Every year in the fall they have the Great Balloon Race in Reno, Nv. ( Hot air balloons) We went last year right after my Dx in July and I took some pictures as usual, but remember breaking into tears several times thinking this was the last time I would see such an amazing site. I am looking forward to this year being a much more positive experience! Thanks Kiwi, I am going for it. Tomorrow may be a snow day here. I hope so, as that means an EXTRA day all to myself!
Divine, I would love to see New York although my DH has NO desire. I want to visit the Statue of Liberty, see a Broadway play and just fish around in some of the quaint old shops. I might have to round up a sister for that! I am definitely planning to hit the road a lot more this spring, big or small, just experiences. My one biggest wish is to visit France and Italy. (Whereas my DH wants nothing but to take our 3 grown kids to Hawaii for a family vacation before they are all scattered) We had somewhat of a "Dud" trip recently in Carmel, Ca. We were looking forward to a warm beach getaway. It poured rain almost the whole time. Decided to take our dog on a big hike. The park did not allow dogs. So we left her in the car and did the hike. It was a glorious walk along the ocean cliffs. But ended up accidentally taking the SUPER long way around. Got back to the hotel dead beat so we missed the comedy show we had tickets for in Monterey. All in all it was OK. Luckily they had a nice spa for our sore bodies. Live and learn!
Wendy, I used to get so sad at the thought of selling my big beautiful home where I raised my children. Now that they are well out and on their own, I feel so much more confidant that downsizing and making a change would be good for me. Like Caryn, I wouldn't mind living closer to an airport, which would mean moving a half hour away to a nearby city. Although I haven't lived in a city for 32 years I wouldn't mind being closer to cultural events, shopping, good restaurants and no snow to worry about.
GG, My Onc, in the beginning especially, seemed to think it was best to "keep it real". Her lack of compassion and hope made my Dx so much moe stressful. I ended up having a tearful (because I was MAD!) conversation with her about how she made me feel. Ever since it has been much better. Although she is still not quite the optimistic cheerleader I wish she was I realize it is just her personality to be reserved and professional. My choices are rather limited here so I just decided to be my own cheerleader for now. One day soon I may try and meet a few other Dr's in a neighboring town just to see if there might be a better fit for me. It's a wait and see situation still.
Caryn, I can imagine how those grandkids keep you close! Congrats on baby Miles and here's to your first trip to DisneyWorld or whatever the destination is! Waiting on the "big Louie" storm tonight!! Hoping it's a drought buster!
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Dee, My DH and I went zip lining in St. Thomas shortly before my dx. I am not much of a daredevil, and I was really nervous. Before we started, we put on our helmets and harnesses, and our zip line guides checked us to make sure everything was properly connected. They then explained all the safety measures in place and exactly what we would experience. They asked if anyone was nervous, and I was the only one, of course. I took that step off the first run and never looked back. I thoroughly enjoyed it. I felt free as the wind blew through my hair. The view was beautiful. I was disappointed when we finished that last line. I am so happy we did it. My children were shocked when they received the photos we took. I think you should go for it
My DH and I had trips planned to Disney World in January and to Hawaii next month. Unfortunately, my husband's health has delayed us, but we will go as soon as we can. We love to go places whether it is close by or not. Last year we spent a week in Long Island, NY while our grandson played in a baseball tournament. We had plenty of time to go to the beach, explore the area, and find some good restaurants. We plan to do that again this summer since the same grandchild will be traveling to the same tournament this year.
I have wonderful memories of all our adventures, big and small. Sometimes something as simple as a day at a museum followed by a meal in a nice restaurant makes for a wonderful day.
Caryn, It's hard to believe that your grandson will enter the world next month. I hope you have a wonderful time at today's shower. Actually, I am sure you will have a great time. What a wonderful reason for a celebration.
My DH and I sometimes talk about moving, but we are still here. Neither of us enjoys the harsh winters now, but we don't like the extreme heat either, so where would we go? If we went too far, we would miss our children and grandchildren. My 97 year old mil still lives in Massachusetts, and we don't want to be too far from her either. We have been unable to visit her since December and she often asks where we are. As soon as my DH is better, we will resume our weekly trips to see her and deliver a dish of coffee ice cream to her.
I meet with my bs tomorrow and will discuss my onc with her to get her opinion about what I should do. I would like to hear what she thinks of the person who might be my new onc. I am seriously considering leaving the cancer center and following my old onc to his other office. On the other hand, even if I do that, there is no guarantee that the onc would stick around. He could decide to move to California in six months. I could completely change things up and travel to Dana Farber in Boston. What to do, what to do.
Have a good night.
Lynne
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Hi all,
Just popping in quick on my lunch hour to post some more kite pics - my husband's pics from yesterday. Enjoy!
http://s1286.photobucket.com/user/pixelsaurus1/lib...
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Terre, OH MY, OH MY, OH MY, OH MY! Wow! The sky, the colors, the variety of balloons. What a beautiful sight. This has topped off my wonderful day. Thank you. It must have been quite an experience to be there.
Lynne
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