Life does not end with a stage IV diagnosis (really!)
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All things are possible and I planned the trip between my 3 month bone and CT scans.
It was wonderful and now I am ready to decorate (with more energetic help) for Halloween, then Thanksgiving, then Christmas I have 4 small grandchildren and now I plan to make memories with them! Trick or treating here I come.
My 6 year old grand daughter, without her mom's knowledge, made her own Halloween cards and taped tooth cleaning plastic flossers on each one. My daughter found out later and realized they were hers and had been used...omg, too funny.
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Not everything in our lives is normal, of course, but I find comfort in focusing on what is normal or as normal as possible. That doesn’t mean I don’t think about bc multiple times a day, I just try to not let it rule my life. There are times when I am not successful, but for me, those feelings need to be expressed as well, I just don’t let them rule my life. I’ve had good times and bad since dx, but I always remember that I’ve had 7 years of life with many moments of happiness (3 grandchildren!). Not implying that stage IV bc is a walk in the park, and yes, I am a naturally optimistic person, but I will treasure every moment until I can’t.
The best to all of you
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Hey there! I was to glad to come across your post as I have just been diagnosed with blastice process activity in my pelvic area. I go for a bone scan on the 23rd. This was a real hit in the teeth as I was nearly 10 years NED after a right mastectomy. I had stage II IDC. I am trying to come to grips with this and your post has helped so much. Thank you and long life to you.
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hello all - just trying to live life one day at a time..diagnosed with Mets a few weeks ago..took a trip to the mountains today..it was wonderful..here is a pic...
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utopía,
That is a fabulous photo! And yes, we live as best we can, a day at a time, or even an hour at a time. But for some of us (and we are a lucky minority) life becomes surprisingly normal and I embrace that.
Jubles,
Sounds as if you have bone mets? Forgive me if I'm wrong. This is not the best thread for discussing treatment or seeking advice. Have you checked out the bone mets thread?
https://community.breastcancer.org/forum/8/topics/789492?page=729#idx_21843
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Just popping in to say hello. Utopria - amazing picture! I can't believe you have those flowers in the fall....? They are beautiful.
Exbrnxgrl - You always have such good advice and calming thoughts. I love reading your posts. I think I have mentioned this before; for good or for bad, I think I compartmentalize my cancer. I put it away in one part of my body/mind/soul, and I live from the part that "doesn't" have cancer and I focus on all of the parts of my life that "aren't" affected by it. Sometimes I feel guilty, like I am in denial and I should really be out there trying to do more for BC awareness, especially this month. We are doing a big fundraiser in my office to support the Colorado BC non profit that I am on the board of (we support women that are in active chemo treatment and have few resources to care for themselves)… and Friday is the day that we are presenting the gifts, gift cards, $$, etc to the grantees, so I will wear pink and tell my story and jump in and participate.
Anyway, just my two cents for the evening. I don't contribute enough, but I do read and try to keep up!
XO
Andi
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hi Andi67 -were in the South in Atlanta..we do have a fall but it’s later..we actually went to the mountains of north Georgia to see the fall colors but it’s a bit late this year. We stumbled upon these flowers on the median of the road. They were lovely!
I meet theradiation oncologist today to find out next treatment plan for my bone met on L1 vertebra..wish me luck ladies!
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Hello to all,
As we continue living with MBC, some moments are bittersweet. I went trick or treating with my children, son in law and grandchildren as has become our tradition. We have a light dinner of finger foods and then head out. I was more fatigued than usual this year and my feet were killing me (plus, I was dressed as a Dalmatian, and I teach first grade!). My younger dd said, “Mom, why are you doing this if it's painful?" My reply? “Because I still can." It made me a bit sad, but that's part of living with mbc. Here are my three precious grandchildren.
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exbrnxgrl, those are some seriously adorable kiddos. Absolutely beautiful! I’m sure they’re too young to understand the pain you endured to spend the time with them, but I bet they can understand having a good time with grandma. I’m glad you can still do those things. I hope you can continue to for a long time.0
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Beautiful picture exbrnxgirl, its a great attitude to go out with grandkid’s even though ur not 100 percent...i agree with you ...we will take it...one day at a time! The moments make a lifetime! The kids r so so cute!
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Thank you both! I should add that I had no grandchildren when I was dx’ed. What a priceless bonus 😍.
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Indeed!!! These are blessings that we fully appreciate...
My boys are 17 and 20..I don't expect to see my grandkids... What a bonus it would be 😍...
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Exbrnxgrl - I love seeing pictures of your grandchildren. You are definitely blessed to be able to spend so much time with them. Utropria, my boys are 21 and 19.... when first diagnosed I just wanted to see them graduate from high school. (that was 6 years ago). Now I REALLY want to see the older one graduate from college because he seems to be on the 10 year plan, and would love to see the younger one graduate too. (he'll graduate before his brother) After that, I will keep my fingers crossed for grandchildren but try not to get my hopes up. I really just enjoy every second I can spend with them.
I was a cow for Halloween.
XO
Andrea
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Just doing my annual pop in to say hello thing and to send good thoughts to everyone! Great to see your photo of your grandbabies, Exbrnxgrl!
I'm still on letrozole (only) and still stable. Six years in January and life rolls on. I'm quite active with the Metavivor group here in New Zealand and led a march on Parliament in October to present a petition asking for better funding for advanced breast cancer drugs. I speak before the Parliament's Health Select Committee in early December. Hopefully we'll make a difference. Not much funded here - Faslodex, Kadcyla, and Ibrance are not funded. Ibrance is $7800 a month and Kadcyla is $10,000 ever three weeks. We have to pay about $1000 a treatment for infusions - not paid for by the health system since they're not funded drugs.
I switched jobs last April (long story) and my job is about a 6 hour drive (one way) from home. So I'm renting a room from my sister-in-law. However, hopefully on Monday, everything will get finalised and we'll be selling our house and moving closer to my job. I must be nuts buying a house at 63 with Stage 4 cancer, but what the hell!
Hope you are all doing well and living/loving life.
Terre
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hi Kiwikatmon....great to read that you have had 6 YEARS on letrozole,its 2 1/2years for me so thanks for posting
I come from Sydney .Same hear. Super that you will speaking in Parliment
All thebest
Bright in hope
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Terre,
It’s wonderful to hear from you and I’m happy to hear you’re doing well. Take good care.
PS: Mymp granddaughter recently got a kitten. I’m going to have to find a way to be less allergic to cats 🐈
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I am getting really inspired to hear that so many people are only on an aromatase inhibitor and stable for so long! Thank you for sharing your stories that continue to provide the rest of us with something so important: HOPE!
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Makes you wonder if it's Ibrance that drives the cancer to mutate and get resistant.
Gals only on Femara, have your doctors ever mentioned adding Ibrance to your therapy? I know you started when it wasn't approved yet but I am curious as to whether you had that talk or not.
You are indeed an inspiration.
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Hi, Terri! So good to see you. I actually have thought about you and wondered how you're doing. Great to hear about your long run on Femara!
Interesting observation, Daniel. I am one who progressed to liver involvement from bone only after 18 mos on Faslodex and Ibrance. At the time, I was very involved in an Ibrance FB group, and this seemed to be such a common scenario in that group, I actually asked my UCLA onc (who has years of experience with Ibrance, starting with the first trial), if she thought Ibrance is possibly a contributor to liver mets. Her feeling was that it is not — that patients progress where they are going to progress anyway. I still think about it, but she should know. Or, like everything else about out tx, maybe it influences some, but not everyone.
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I have been on AI’s only since dx. My mo has never mentioned adding Ibrance and since I’ve done well for 7 years there doesn’t seem to be any reason to add another drug. I won’t speculate on any connection between progression and Ibrance since anecdotal evidence doesn’t mean much to me
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it is anectdotal and we really don’t know for certain what the answer is but I have def thought about asking my MO if it would be okay to let go of the Ibrance. But of course there is some fear wrapped up in the what if’s that would come along with doing that.
I feel like we each have to find our own intuitive inner guide and really quiet the mind enough to listen to what it says.
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Great to hear from you Terre! It's been a long time! I remember that you'd taken a job that was a long way from home.... I think you should go for it and buy a house a closer. We just bought a new house.... I am 51... I'll probably never live to see it paid off, but oh well. We love it!
I'm not on AI's or Ibrance so can't comment on any of that. Just Herceptin.... once every six weeks or so, and Xgeva. - once a quarter.
Happy Thanksgiving to everyone.... … I am thankful for this BCO Board and for all of you!
Andrea
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Colorado is GORGEOUS, but maybe a little too conservative for a "California Girl" like me ;>).
We LOVED Arizona, but it gets way too hot in the summer.
L
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Terre, I happened to be thinking of you the other day, wondering how you are doing. So glad you popped in to let us know you're doing well.
Interesting observations about Ibrance. I've been on AIs + Zometa or Xgeva only since intitial chemo tx ended in Oct. 2015. My MO mentioned to me once that Ibrance would be available for me now should I need it (for progression), but never planned to prescribe it as a normal course of ongoing treatment.
Conservatism depends on which part of Colorado you're in, Lita, like Northern vs. Southern Calif.; My in-laws are in Tempe, and we love going there, but not in summer!
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hi ladies,
I’m semi new here. Atleast to this area. I was dx with dcis in July , but After many tests and ambiguity , it turns out I was stage 4 from the start. My first pet scan showed a teeny tiny 5 mm spot on my Liver which they were confused about as it didn’t show up on ct. mri confirmed the spot but they couldn’t decide if It was a met. Anyway my Pet on Monday showed nothing’s lighting upexcept a tiny node under my arm (which was 1.6 cm down to 7mm), so that’s how they determined it was a met. Very close to Ned which apparently is rare for someone so hormonally driven. I’m glad I found this board as this dx has made me feel like my life will never be quite normal. I’m 31 Monday and have a three year old that I desperately want to see grow up. I want to go back to work . I'm hoping to be Ned for a long while . Two women I know have been Ned for 9years, one who is Tn -no TX since 2010! I’ve heard the term oliometastatic, which I think I am , does that mean better things
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It should, BAP.
Best wishes to you, and enjoy the holidays. Try to do something that brings you joy EVERY day, and don't project yourself into scenarios that you may never have, take it one day at a time, enjoying your child.
We just got my "legacy" tree...a beautiful "Baby Blue Spruce," cousin of the "Fat Albert" Blue Spruce. We named him "Fatty Boy," and decided on the Baby Blue because he's a little leaner than a true Fat Albert, which gets very round, ergo the name Fat Albert. Yes, that's my joy for today. He's in a planter in the house, and we will decorate him and then plant him outside in January.
L
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thanks Lita,
I’m Seeing many professionals to try and shift my perspective because I know it truly makes a difference. I think I’m just grieving the life I thought I’d have . I always wanted to reach 30 because I thought it was the best age for some reason. But so far 30 has not been all that kind lol The uncertainyy is tough but I know i have a chance to lead a longer life than I think. The plan now is to finish my six rounds and go from there
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I spent 4 days with my grown children and young grandchildren. We went snow skiing. I stayed on the "baby" slopes and probably ruined the slopes by snowplowing thru all my turns. I did not fall and totally forgot I have this horrible disease that haunts me endlessly. Walking has kept my legs strong.
My DH and I spent a chunk of our savings..but I will have these memories forever and they will to. We are now planning a summer group camping trip. My palliative NP suggested to have something planned for me and my loved ones to look forward to. Cancer impacts all.
Looking forward to 2019, even with the unknown parts. Just diving in and hope I can come up breathing!
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Sandi,
Sounds like a great ski trip and so happy that you've made great memories.
I am still on winter break. Have been tidying up my very neglected house. Enjoyed time with all children and grandchildren. Youngest granddaughter developed pneumonia, but is on the upswing. Very scary to see a 10 month old so sick. I now have a miserable cold and sore throat but don't have to go back to work until next week. I have gotten quite a lot of knitting done too. A very happy, healthy New Year to all🎉! Here's a current pic of my three loves.
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Those 3 little beings must help you joyfully live your life. So very precious.
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