Life does not end with a stage IV diagnosis (really!)
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Bliss, liking that you are NOT posting here quite so often. Yo me that means living your life. I also had a good scan result this week. Still NED
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Congrats on your good news, Karen!
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A very belated Happy Thanksgiving to everyone! I am so, so thankful for all of you.... I am not sure what I would do without you! This is my 7th Thanksgiving post diagnosis...very different from the one where I was in the midst of chemo in bed, weighed 100 pounds (the one thing I was thankful for at the time was thin thighs - I'd had them before. They are gone now!) and couldn't even eat my favorite - stuffing!
We just returned from a week in Hawaii with extended family - my mom, sister and her family and some cousins. 15 in all - we went to the Big Island. It was truly an amazing week; I am so grateful for the time I get to spend with everyone. The sunshine and 85 degree weather didn't hurt, either! We swam, boogie boarded sat on the beach ( I read 3 books!)l drank Mai Tai's and lots of other yummy drinks, swam with spinner dolphins, swam with manta rays, went horse back riding, and really just enjoyed being together. I'll try to get a picture posted later this week.
Hope everyone had a great holiday and holiday weekend!
XO
Andi
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Andi you are a STAR! Trying to do something similar too... maybe not quite so exotic, but out in the hills, watching the wildlife and eating / drinking well... and making no apologies for alcohol either
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Andi,
Wow, that sounds like a great vacation. I love Hawaii and once had training on Oahu for six weeks! Keep on traveling !
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I'm very grateful to you for writing this post. I haven't been on the boards in about a year. This week I learned I am likely stage IV. I need a biopsy to confirm it's breast cancer but I have several hot spots in the skeleton that were discovered on my recent PET and bone scans.
Anyway, I still don't know how to make sense of it all. I'm in that tidal wave of changing emotions right now but I appreciate posts like this that are encouraging. This is my first scan through the Stage IV page and forgive me, I started on page one and skipped to the last page. It's a little overwhelming right now. This seems like a good place to start so thank you. I will refer back to it. I'm still learning how to get through this initial phase of shock. -- Elizabeth
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emac877— I am right there with you. Recently dx St 4. Have PET scan tomorrow to see how extensive mets are.
You hear the doctor tell you the diagnosis and it all becomes like a bad dream but you wake up the next morning to realize it’s real.
MO says Ibrance and Letrozole are next. I have read many posts on the Ibrance thread from ladies on their 20th, 30th, even 40th cycle and have hope there are years ahead for me and for you
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Dodgers and Emac, welcome! We know full well you don't want to be here, but if you have to be this is def the place. There are various threads with good sensible and funny people...this one keeps me sane as it's really about living life as normally and fully as possible. Exbrngirl will elaborate!
The stage 4 Ibrance / Letrozole thread is also helpful if you are on those meds as I am. I'm on cycle 18, doing fine considering and NED ( no evidence of disease ) on CT scans. The drugs have side effects but are working for now and that's the best we can hope for. You'll hear the phrase 'new normal' and that's a fair description.... although there will be the temptation to punch anyone not in this world who says that to you, along with ' everyone is different' and a host of other phrases.....Or that might just be me! I'm just grateful that I have the energy to be annoyed!
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Karenfizedbo15–. Thanks for the welcome. I see you are from Scotland. My mom’s family YEARS ago were Scottish.
Hoping to get years from Ibrance and hope to one day write about being NEA
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Welcome ladies! I hope you will find bco as supportive and informative as you need. As Karen suggested, if you scroll through the topics on the stage IV forum, you’ll find threads dedicated to almost every specific type of bc, treatments etc. I’m not trying to be the thread police but I wanted this thread to be a place for stage IV folks to celebrate or just tell about the “normal” moments we have even in the face of a grim diagnosis. I also hope that our stories comfort the newly dx’ed so they can see that despite bad times, there can be good times too. Take deep breaths and try not to get too far ahead of yourselves with worry.
I have been truly exhausted lately. In addition to their classroom responsibilities, most teachers in CA have adjunct duties, myself included. I am also my school’s union rep and we just went through very contentious contract negotiations. Thankfully, it has been settled but the drawn out negotiations created a lot of bad feelings between the teachers and the administration. Tomorrow is my last day before a long holiday break. I really need it 😴
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I will add some positivity too......11 months ago I became STage 4......with extensive mets.....but today I drove for 30 minutes, had my hair cut, did a little shopping and then had lunch with a friend......all things I thought I would never do again a few months ago.......yes I am shattered BUT I managed to do all this on my own without a carer.......
I live day to day.......and of course I get down but there is a lot of support on here and CAryn is an ace support
Love to everyonex
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Hi all. Just checking in again to wish everyone Happy New Year! I hope you've all had a nice holiday season.
Dodgers & Emac, welcome! Sorry you've joined us Stage 4ers, but this thread is a great place to come to celebrate the good times and find comfort in the fact that Life Does Not End with a Stage IV Diagnosis and can be well-lived in spite of it. For me, I'm celebrating my 5th New Year's since dx, and while it doesn't get easier with all the appts., scanning and med SEs, you'll manage to find joy in what you're able to still do. Keep a positive outlook and enjoy all the living you can!
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Happy New Year everyone!
I am celebrating that I've accomplished several "bucket list" items in the past year.
1. I've known that I was eligible for citizenship in Italy for quite a while and I've worked on getting my citizenship recognized on and off for years. In 2019, I finally completed all the necessary paperwork and attended my appointment at the consulate. Now I just wait for the approval letter! I had a dream to retire in Italy, I do not know if it will happen, but I also wanted to get the citizenship so that my children, nieces and nephews can pursue it too, more easily, if they wish. It does open up opportunities for work and school for them, not to mention making European travel a little bit easier.
2. Got my US passport after years of not having one and used it to travel to Peru last month! Very spontaneous trip, hey, I am learning to seize the moment.
3. Saw my son get engaged to a very lovely, smart and serious woman.
4. Getting ready to travel to Puerto Rico next month.
Life is definitely not over yet. I wish the very best for each and every one of us in the coming year.
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I was lucky - I have lived pretty much normal life in the 6 months since diagnosis. For which I am extremely grateful. Happy new year to all !
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A happy new year to everyone. Let’s hope navigating through the ups and downs of our situation in 2020 has more ups...or at least level!
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Happy New Year! I'm looking forward to another year and remembering just how much I have been able to do since my diagnosis four years ago. I thought life was almost over, but it really wasn't. Since then I've:
-Kept my full-time job missing virtually no time for health related issues aside from a few hours every three weeks for my infusions.
- Taught my son how to drive and he just got his driver's license (he was 12 when I was diagnosed and one of his biggest worries was that I wouldn't be around to teach him).
-Climbed the stairs up the Eiffel Tower in Paris.
-Hiked into the Grand Canyon (twice!)
-Backpacked in Olympic National Park
-Surfed in Nicaragua
-Snorkeled with sea lions in Baja.
-Canoe tripped in the Boundary Waters Canoe Area Wilderness
Just to name a few. Life is different with MBC, but it's still pretty amazing when I look back at all the things I have been able to do instead of the things I haven't.
May the new year bring you all good things.
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Wow! It’s wonderful to hear of everyone’s adventures. 2019 was not my best year, but I’m still alive and kicking! May 2020 be filled with peace and happiness for all
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Traveling ladies - how do you manage the pills and customs? We are looking at some trips that may route through the Middle East where they have strict requirements on what is let in to the country (we were scanned for pork products entering Qatar last year). Do you just keep a list or a letter from your doctor and the pills all in one bag? Does no one check? Do you just produce it if/when they ask?
DGHoff- if you liked Olympic National Park (and we sure did!) I would suggest an Oregon Coast trip if you haven't done that yet. Cannon Beach was really fantastic, lot of great camping/yurt facilities along the entire coast too. We've driven all of 1 on various trips (with the exception of south of Laguna Beach to Mexico) and that, along with the central California coast) was probably our favorite stretch.
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SondraF -- I travel a lot trying to check off everything in my living list. I make sure prescriptions are all in their bottles & I take a print out from the pharmacy of what I'm on. Vitamins and "just in case" meds which is its own gallon sized ziplock bag, I do sometimes put in smaller containers or pill pouches. I carry all medicines in my carry-on, but to date having traveled to Australia, New Zealand, UK, Panama, Peru, Ecuador, Israel, South Africa, Caribbean, and all over Europe, no one has ever looked at them. I do research to find out what is not allowed into the country. I'm taking a cruise out of Japan in May, and they have very strict requirements such as no sudafed allowed and many medicines require advance approval. I will be making sure I dot every i and cross every t so that there are no issues b/c they apparently do check.
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So Glad to hear about all the things you have done since your DX!!!
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Thanks for the Oregon Coast tip, Sondra. I loved the beach camping at Cape Alava in the Olympics. We have backpacked there as well as in the mountain part of the park. I love the Olympics and have had some powerful experiences there. I will have to check out Cannon Beach.
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Yes, does depend on the country. Entering Peru with drugs prescribed by a doctor is not a problem. I kept Rx drugs and supplements in original bottles and in my case, put them in my checked luggage since my son insisted that was better! But in theory, TSA should also not give you a problem if you have to or want to have them in a carry on, as long as you have everything in original containers showing the Rx info.
I brought just enough for the trip.
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This pic is from 2014. No, not a current adventure but a good memory with a fellow bco member and fellow teacher, ruthbru. She posted this pic on another thread after a discussion on gin and tonic as we are both big fans! I think I pretty much look the same save for shorter hair and new eyeglass frames. I’m in black.
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Thank you so much for your positive post. I too have been fortunate to have kept working and doing my daily activities without much interference from the treatment (Ibrance/Letrozole). I rarely log on to read post here because so many are dismal and do not have much to offer from a positive point of view. I wish there was a group of only positive people like yourself that left negativity at the door.
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Happy 2020!
I love reading about everyone's fantastic adventures past and upcoming; always uplifting!
Caryn, those are wonderful pictures of you and RuthBru.
JustG22, this thread is all about positivity and living our best lives with gratitude and joy, so keep coming back here and I think that's just what you'll find.
Hugs to all.
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Hello friends!
I haven't posted in a while - the holidays have had me flying around like a chicken with its...you know the saying!
I slept 12 hours last night I think I am so pooped! exbrnxgrl I totally get the tiredness. I hope you get to rest and recover from all that hubbalaboo.
I love the posts about all the accomplishments since being diagnosed. Isn't it wonderful to be able to look back and see how much we can still do while living with a cancer diagnosis! Pretty amazing! I have trained in the oncology field from a Chinese medical perspective and even so, I always was working with people not feeling so great due to their treatments. I had never met any Stage 4 folks...probably because, like us, they were all out living their lives to the fullest!
Since my diagnosis...
- I have been to Trinidad and Tobago twice
- I traveled through northern Italy
- I was snorkeling and hanging out in Jamaica
- I have hiked extensively
- I started up my own private Chinese medicine practice and clinic AND it is successful!
- I am single and still date...and have even had sex a few times! wooohooo!
- I taught a graduate level medical sciences class for almost 2 years
I know there is much more but these are my favorite accomplishments thus far.
JustG22 I get it about the negativity. I just block it all out...There is a saying, "Take what you love and leave the rest." That is how I deal with it when it comes up. Hopefully you can find more supportive threads and please come in and spread some love and positivity!
Hugs to all,
Philly
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Welcome G22,
I am the op of this thread. I do want to acknowledge the very real struggles that many of our stage IV members experience. I don’t really view postings by those going through rough times as negative but simply a reflection of what they are experiencing. It is very real and I don’t wish to invalidate that in any way. My purpose in creating this thread was to have a place to record and share the normal moments in life in spite of our stage IV diagnosis. There are a small subset of stage IV patients who experience many “ normal” moments and maybe even fairly normal lives. I guess I just didn’t want people to throw in the towel the minute they got a stage IV dx. It does change your life and your future forever, but good times may still be had. And, it’s ok to feel down and negative at times too!
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Go Philly , your list is awesome ! That is a successful life by any person's standards. Long it may continue!
JG22 - as an OP said I do not see it as negativity. It is not cutting off and ignoring those who struggle greatly often on a road very close to death. I understand why you would not want to see it.
Tempted to put on one of my recent good photos on for a little while- it is not altered in any way.
Happy new year to you again !
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beautiful woman Anotherone!!!! Love the photo, you, and your pants are so cool!!!
thank you for sharing! Always great to put a face with a name :-)
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Anotherone, what a picture perfect photo of you! I absolutely love it! Be sure to get a print of it and frame it or at least stick it on your fridge. Just gorgeous.
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