Life does not end with a stage IV diagnosis (really!)
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Need some help on how to get my crap together. So much of my day is wasted on anxiety. Can't seem to function. Wish I could just stop thinking about stuff. I am a mess most of the time
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Diana...I am the same way!! Driving myself crazy with all the worry! Talk to your oncologist about it. There are meds they can give you to help
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Gracie- I am on medslol. Seemed to help for awhile but not anymore. Maybe she needs to up my dose. I worry about leaving my family behind . Our youngest graduates in June. Feel like if I leave now he really gets short changed . A ton of quilt with BC even though we didn't chose it .
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Diana, speak to your doctor as soon as you can about the anxiety. I feel like I got my life back when I finally found anti axiety meds that worked for me. Several years later, I felt very down for too long and got an antidepressant med to take as well as the antianxiety one
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Lita,
What a wonderful tribute from your DD. It truly shows the reality of this f _ _ king disease.
So sad and yet so heartwarming that your dd did this!
Babs
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Lita, your daugter's project is a wonderful tribute to you and your journey. Thanks for sharing, and I Iook forward to seeing the desert photos.
NB, glad you got to Iceland and saw the lights! That's one place I would love to go. My family is planning a trip to the northwest this summer, hopefully, with stops in Vancouver/Victoria. My daughter has never been to Canada, and so wants to go.
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Dinarose, you are not alone in that regard believe me. I go up and down but seems like the down parts are getting longer. I know guilt about cancer is illogical for the most part but I still feel that too, how I will dessert my kids, drain our finances, put them all through the trauma.......I think Divine's idea is a good one for both of us! More meds which I haven't tried yet. I don't want to spend the rest of my life feeling depressed and down and guilty. I need to find my spiritual center (or something.)
Nice job on your daughter's project Lita!
Z, thanks for reminding me about the pain mentality. It's so true. I can tell I just "did something" dumb and it needs rest and perhaps a deep massage or some yoga. it just adds to everything else and tires me out.
My DH and I are in the beginning phase of trying to plan a big trip. I've never been out of the US (besides Mexico) so am really hoping we can pull it off soon. Thinking of Italy/France.
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Ooooo, Artist! Trip planning is fun! Get some really great guidebooks and enjoy browsing and taking notes.
The grief and the guilt are natural responses to our situation. Especially when it comes to our loved ones. For me, meeting regularly with a good therapist who has experience with cancer patients has helped me keep my balance. I'm talking about cognitive behavioral therapy, mindfulness, etc. Diana, considering what has been happening with you, I hope you are cutting yourself some slack and not expecting more from yourself right now than you would expect from someone else in the same situation. Be kind to yourself. (That goes for you too, Artist, and everyone else.) Anything that will give you some moments of relief, do it. Guided imagery recordings (Belleruth Naparstek is great), a massage, time with nature, relaxing music, cuddling, watching a funny show, creative projects, whatever helps relax or distract you. Or maybe it would help to write things down. I know I can't really understand how you feel right now, Diana, but know that I am thinking of you and sending hugs.
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Diana, my children are grown with children of their own. I forget sometimes that I'm a lot older than most of you. But still I worry especially about finances too. I'm on a fixed income, my husbands retirement and I'm concerned about how I will pay for things as I get further along. I have my home but was hoping to leave it to my kids so they would have a small amount after I'm gone. And also, what in the world is going to happen with all of our insurances...worrisome. I do take lorazepam to help with anxiety but then I worry about getting hooked on that!!! It's a never ending circle it seems! I hope you are feeling a little better, and that you can get some help from your oncologist
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Lita - a wonderful tribute from your daughter. Just perfect
I worry about finances as I move toward a somewhat early retirement, age 63. Hoping to set aside some $ for my kids to help pay for a wedding or help with purchasing a house. Don't know if I will be here - but I am sure my ex will not be available with any assistance - emotional or financial.
I took three vacations with my kids post dx and post separation We went to Bermuda, California and the Outer Banks Have not done anything for 2 years due to $ but promised both of them a trip with each one of them alone. I just booked a week in Costa Del Sol with my daughter, age 19, in September. I feel well am doing well, but energy is not what it used to be. So we will see how much I am able to keep up with her. Setting a very attractive 19 year old free and alone in Spain frightens me LOL I have told my son, 23, to think about what he wants to do He tells me away from a tourist area, he can surf, but he is guessing I won't want to stay in a tent (we did this as a family when my kids were young 5 and 9.) Tents are out of the question - but I will do an eco lodge of some sort near a good surf site Nicuragra is on the list.
Travel insurance is in my future. My daughter is so excited about Spain and my son about planning. Prayers that I continue well and enjoy both trips. It is about the memories.
Best
Nel
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good for you, nel. I'm planning a trip to Hawaii in October. Hope I'm OK to go...it's 6+ mon5hs away.
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Nel,
I hear you on the energy. I am at a great conference in Palm Springs. I'm learning a lot and the mountains and palm trees are beautiful. It's very hot but you can still see snow on the higher peaks. Chilling in my hotel room before a dinner with my colleagues tonight, but really enjoying the down time.
Spain sounds wonderful! ¿Hablas español
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I really appreciate these posts. I am newly diagnosed Stage IV with bone mets to the spine and I desperately need these stories of living with this rather than just dying from it. A lot of you have mentioned getting over the "hump"-- the wave of bottomless shock and sadness that wakes me up every morning, keeps me from going to sleep at night, and rocks me to my core many, many times a day. I have two kids, 8 and 9 1/2, and the thought of leaving them feels like too much for my brain to handle. I'm plagued with guilt because I decided-- with my onco's consent-- to stop taking Tam after my Stage 1 diagnosis and mastectomy because it was making so very depressed and angry that I felt I couldn't live my life. And now having made that selfish decision I really am going to lose my life and hurt all those who love me. So my question for you inspiring women: how did you get over the hump? What did you do to get to the place you're at?
Jessica
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Jessica, I am sorry that you have reason to join us, but welcome. The first thing I need to tell you is to stop feeling guilty. That is the advice that my breast surgeon gave me during my first appointment with her. She said that there is nothing that I did and nothing that I didn't do that caused my cancer. We cannot go back and change things, and even if we could, the outcome could be exactly the same. There are many, many people on these stage IV boards who did take tamoxifen for the recommended time. They still had progression months or years later. There are even some who saw progression while they were still taking it. It is entirely possible that cancer cells had already started spreading while you were being treated or when you were diagnosed, and it just wasn't discovered until now. We each have to find our own way back to a "normal" life. For me, I began to feel better once I had a treatment plan in place. It gave me a sense of feeling that I had something to help extend my life. My onc has been very supportive. After almost two years, I still feel good. I appreciate things more than I ever did - my family, my friends, the seasons, good food, you name it. My DH and I just returned from a Florida vacation. We loved the warm weather. Our trip was extended by three days when the big snowstorm hit this area and all flights north were canceled. We were not sad to have a few more days of warmth and sunshine. I am telling you this just to let you know that life does go on. You will find some strong, supportive people on these boards. Ask question, vent, complain, tell us about yourself. We are all here for you.
Hugs from, Lynne
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jbc never never blame yourself sometimes we don't know why these things progress the way they do. You can do this for another twenty years it's a new way of living. A chronic condition medicine is moving so fast (well it was till Trump got into office) we are learning more every day about this enemy. Just remember you aren't alone . Take your five minutes set the egg timer and sit down and bawl and get angry. Then put the egg timer away and enjoy your life and your children. None of us know when our time is up but it's up to us to make the most of the time given to us. Life is beautiful we need to be a part of that
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Thanks Shetland, Now that we have downsized and moved and the house is almost all done being decorated I am looking forward to indulging myself a lot more with everything + that you suggest. It really does help to keep the mind and body moving and occupied! I get these moments where something sparks the sadness or fear but most of the time I am able to pull myself back up pretty quickly.
I have been researching Italy/Spain, got applications for passports, and a trying to get advice from fellow travelers about what to see and what to avoid. I certainly want to do it right considering how much it will cost and could be "THE" trip of my life! One of my artistic outlets is photography so get very excited about that.
Gracie I take Lorazepam too, but just a half a "chip" when I am really wound. It does help but also worry that I will become too dependent. But then again, in our positions, I could think of a lot worse habits I suppose...
wow Nel, what a fabulous idea to take each child on their own trip! I may have to consider that idea on perhaps a smaller scale. It is about the memories and experiences. have a fabulous time.
Lita, I expect to see pictures of white sand and palm trees from you in six months!
Lynne, You are so sweet! Such a true and great reminder for us all! You too Wendy, life IS beautiful!
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jcb, I am sorry you find yourself dealing with stage iv. I agree with 50sgirl and Wendy: you need to get rid of the guilt. Easier said than done, yes, it is a process. The first months were some of the hardest for me. Try to keep things simple for you and your kids. Do only what is really necessary. Be very good and kind and loving to yourself.
If you need an antidepressant, talk to your doctor. Many of us take them or antianxiety meds. Get out in nature, take walks. Clear your head. Write in a journal or notebook three pages every day or every other day. Write your feelings down and be honest. No one ever has to read it.
Do new things. Drive somewhere new, try a new restaurant or take out place, or shop at a store you have never been in before or take a day trip to do something you always wanted but have put off till now. Try a new recipe. Do something new once a week.
Read a steady diet of books like Radical Remission and Mind Over Medicine. Take some deep breaths. Live life just today. Focus on the one day. There is much fullness in one day. Then do it again tomorrow. Live just that one day. Don't project yourself so far into the unknown future. We are all here for you in spirit. Hang in there.
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jcb, welcome. I agree with all the previous comments. My breast surgeon, too, told me this was nothing that I did. It's only natural you would be worried, scared and anxious, I was, too, but once I had a plan in place, I felt very confident going forward. My medical team has always been very informative, positive and supportive throughout, and I think that is a huge part of it. Make sure you have an oncologist you trust and who listens to you, and if not, get a new one! Coming to this thread has helped me see that Life does not end with a Stage IV diagnosis. I really believe in knowledge being power and I've gained a wealth of knowledge from all the BCOers that has helped to calm me these last two years. So, come here often to share or just read, but don't read the statistics on the internet, they're out of date, and you are more than a statistic! I know that tomorrow is not promised to anyone, so I chose to live my life and enjoy each day as they come. My daughter will graduate from high school in two months and I look forward to a wonderful time with her, family and friends, and then on to summer plans. Hug your children and enjoy making memories with them because they will be your best medicine!
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Divine: (Hi from a 2011 Chemo lounge girl )
---you say it all so well...many days I wake up and the first thing I think is " Well, I'm still alive..I managed yesterday and it was a good day so today I will do the same....I won't ruin today with worry".
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Divine~. You are sooo correct, I spend more time talking about what I have and what I have to do. That I sometimes don't even remember my name. I am a patient. That's how we live. That project was remarkable and beautifully put together. It's so difficult to remain cheery when you want to punch someone in the nose just because you feel so badly at times.....and because after all we have cancer and that just makes me mad period. I am 46 and could run like the wind. Now it seems on a bad day, that wind could knock me over!
Having all you ladies as battle partners helps tremendously and I pray we are here to complain and battle for many years to come. Bless you all!
~M~.
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Divine, you are just the best. Keep preaching at us. We all need to hear what you are saying. I'm ten years into this stuff and have lived through some pretty horrific stuff-- and my experience is that you are exactly right. I have to keep seeking out new adventures, (however small they must be on especially challenging days), in order for me-- for my life-- to stay within reach of JOY.
What is the point of working so hard to stay alive if we don't have joy in living? I am willing to scrap pretty hard for it!
I try to think of all these pesky treatments as our rocky paths to joy. As long as I keep going, even for just a few steps and one or two small delights on some days, I feel like am cultivating a life that can still surprise me with moments of inspiration, beauty and light. That is joy. I am still alive.
Off to do some new things on this first day of Spring!!
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Awww you ladies are the best. I come here everyday just for the shot of encouragement and it works so well. Had my son and his girlfriend over for dinner tonight and watched an old classic movie after they left. A very nice evening. We are expecting a dusting of snow tomorrow even though it is officially spring!
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Dianarose~. I have always been a worrier. Like about everything. I'll even go as far as to say I am a castaphyzer. I guess that is because all throughout my life, and anyone's lives, bad things happened. It's normal to worry, especially with what we are dealing with every day. My best friend is officially named Valium!! We talk every day and it always listens. lol get what works for you to calm yourself down. You're going through some serious stuff this past month especially with waiting for the ibrance clear!! I'm pulling for you everyday, everyday! I'm going to get outside today for a run. Unless they didn't plow the path I walk on after um 19 inches last week of spring snow ❄️ with ice! Hang in there Diana. Ask that onc for some Meds to calm your nerves. Do you see a palliative care doctor? They are amazing.
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I am new to this site but oh so glad I found it. I was diagnosed completely out of the blue in Sept 2015 with Stage IV met BC in almost all of my bones down to my thighs and in my left thigh to the extent I needed a titanium rod inserted. When I say "out of the blue" I had been going to a chiropractor for back pain and it just kept getting worse. I finally went for a MRI and they found the extensive cancer. They have never found any tumor in my breasts and diagnosed it with a bone chip out of my shoulder blade. It was also in my lungs in fluid causing me to have some breathing difficulty so I was on oxygen for a few months. I had chemo to handle both the pain and improve the breathing. I hated every minute of it but it was very successful. I was on Arimidex for a year and then my numbers started climbing. I am now on Tamoxifen and hoping it will reverse the climb. After the chemo effects wore off, I have really felt terrific. I have back pain from a combination of arthritis and cancer damage but I have had cortisone shots and they have helped immensely. Like all of you, I don't know if I will live one more year or 5 more years or 10 more years. I am just so thankful for the 1 1/2 years I have had feeling almost normal! I cry for the sad stories I read here and rejoice for the happy stories. Both of them are worth reading. You are truly some amazing women and I marvel at how you manage your lives and live life to the fullest. It inspires me!
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Jcb~ I am so sorry that you are having to go through this, I know how you feel, I truly and honestly know how you feel. We all do. With every fiber of who we've become. Its some scary stuff. But there are a lot of long time survivors on these forums,and they are amazing and I sit and read in awe of them and what they have already taught me. I was Dx on 1/22/16 stage four Boom out of the gate. I still have my moments but realize with medicine the way it is now. I don't think I am going anywhere anytime too soon. So let us send you such loving hugs and support. God bless you!
~M~
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Big hello to,the new ladies here. It sucks but there is much love and support here.
Hurts me that so many are diagnosed stage 4 from the gate like me, and my breast tumor was undetectable, too. That type of cancer is called occult amorphic, for hidden, without shape.
Keep sharing, it's empowering.
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Lita~ on the day I was diagnosed, I ran five miles. I felt sick, but that was the last thought in my mind although i did find a lump that they had been watching. Then wham! Right into aggressive chemo only to find it was stage four and may have just lost my hair for nothing. Luckily, they continued with the heavy chemo and took out my liver metastatic small marble sized tumor along with everything else. Only to find it took up residence in my bones. Not terrible, but wishing it was gone. Everyone has a story and even though it would not be the story we would have wanted, it has made us who we are. ~M~
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That's a strong philosophy, M. Trying to make the best of it will keep us all going. That's all we can do, one day at a time.
L
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Lita~This month hasn't been to bad if I am honest. I am feeling stronger slowly and have seen a doctor each week. Each one started with compliments on my blood work and at the end of the visit overall it was extremely good and upbeat. I just jogged 25 times around my house downstairs to get my heart rate up. But I have a little cold so that's it for today. Saw my palliative care doctor today. That is a gift in itself! Helps tremendously. The bone pain goes up and down along with the joint pain. I guess it's part of the song I sing. Have a restful day! ~M~
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M, my pain does that too. However I do know that I'm going to have to get Rads to the lower back soon. Pain is getting worse back there, and there's a bit of numbness in the upper right leg now too. Momallthetime said to really watch the nerve impingement. RO said they will do Rads for palliative reasons and to relieve the grip on the nerves. Had to have it last year for thoracic spine, now it's the lumbar spine's turn. They might also zap the tumor in my back muscle adjacent to spine. I'll know next week when I see the Dr.
Gees, it seems like all we do is go to appts and blood draws. That's why getting out and exercising and trying to see friends is so important 😀.
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