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Life does not end with a stage IV diagnosis (really!)

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Comments

  • aprilgirl1
    aprilgirl1 Member Posts: 798
    edited February 2021

    Exbrxgirl - hope you are feeling better! I am so happy that your daughters and granddaughter were there for support and help! Here is a photo from September, 2020.

    Life does not end with a stage IV diagnosis! I had to plan this around Ibrance dates and fulvestrant injection but we had a great time. This was a road trip that my husband and I took for our 30th anniversary when our vacation plans to Europe were canceled due to Covid. We had a great time. We did wear masks when in public and the National Parks were open but most of their info buildings were closed - rangers were outside, masked and with pointers and maps to help us tourists if we needed directions. This photo is from Bryce Canyon.

    image

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,251
    edited February 2021

    aprilgirl,

    What a beautiful picture! I am really itching to travel and hope to feel safer by summer.

    I am very glad to have this Presidents week break to recover but I need to get my classroom ready for real students on 2/22! 😱

  • divinemrsm
    divinemrsm Member Posts: 6,606
    edited February 2021

    April, what a fabulous photo! You look amazing and what an absolutely spectacular view.

    Caryn, hope you are doing well after surgery.


  • beckymd
    beckymd Member Posts: 27
    edited February 2021

    Hi Everyone. I haven't been here for quite a while but thought I would check in. I was diagnosed stage IV in 2017 and have been on faslodex and arimidex ever since and doing well - NED. So far, so good. I feel good most of the time and aside from lots of appointments, am doing very well. Life is normal. Very few side effects from the monthly shots - sore for a couple of days and an occasional hot flash, but otherwise not bad. Doesn't stop me from enjoying life. I hope this gives some comfort to all other ladies going through this. The forum helped me a lot after diagnosis, and I hope it helps others, as well.


  • exbrnxgrl
    exbrnxgrl Member Posts: 5,251
    edited February 2021

    Hi Becky,

    I am so happy to hear that you are doing well! Our lives are never quite the same after a stage IV dx but since my arrival on bco I have found more reason to be hopeful. Take care.

  • aprilgirl1
    aprilgirl1 Member Posts: 798
    edited February 2021

    Caryn - rest up! We just opened schools last week (staggered grades). My kids are in college and beyond so college kid still online. Hope you had a covid vaccine (I think teachers are prioritized in California?).

    Divine - Thanks for the compliment! Trying to focus on the good this week:) Hope you are recovered from covid.

    Becky - thank you for posting! Great news that you have been stage IV and doing well since 2017.


  • exbrnxgrl
    exbrnxgrl Member Posts: 5,251
    edited February 2021

    aprilgirl,

    Unfortunately the vaccine rollout in CA has been sluggish. Additionally, each county makes decisions based on supplies at hand. I live in Santa Clara Co. and although teachers are technically eligible, the supply doesn’t support vaccinating teachers yet. Alameda Co. has a federal vaccine site that opened today and will vaccinate teachers but you have to work in Alameda Co., so I continue to wait. .

  • aprilgirl1
    aprilgirl1 Member Posts: 798
    edited February 2021

    Caryn - that is frustrating! In Washington State teachers are not prioritized which I disagree with - if we are opening schools, teachers should be vaccinated early (or have the option). Sending you good energy to continue to heal and be ready for 2/22!

    I sell real estate and had the highest sales ever in 2020 - during a pandemic and while having stage IV (not obvious and most people don't know about my dx). I feel fortunate that Ibrance/fulvestrant have worked well so so far and I don't have a lot of side effects. We definitely had to follow a lot of safety protocols while meeting with people/showing homes. All in my office stayed covid free which is reassuring.

    edited to add: when I was dx with stage IV, this thread gave me so much hope and strength, and continues to give me hope! I thought I would have to quit work, and had a lot of worries. I still have worries but am doing well right now!

  • Bliss58
    Bliss58 Member Posts: 938
    edited February 2021

    Aprilgirl, beautiful photo. I just love anything Utah, but especially Bryce. Glad you got to go. Hubby and I hope to go sometime soon after we finalize the sale of our home.

    Divine, did I miss that you have/had Covid?

    Caryn, hope you've fully recovered from surgery and ready for your kiddos. And, that you'll get a vaccine soon. California is such a big state I imagine it's gonna be quite a task to get vaccine to everyone who wants or needs it. Colorado is prioritizing teachers in this second round so we can have schools open again by March.

    Always so nice to see how many of us are doing reasonably well with our "normal" lives. Congratulations to you Becky, and welcome back.

    I also have to agree with Aprilgirl about this thread providing so much hope. It certainly did for me, and I thank you again for it, Caryn!

  • divinemrsm
    divinemrsm Member Posts: 6,606
    edited February 2021

    I absolutely agree that all teachers should be eligible now to get the vaccine!

    Bliss, yes, my husband and I both had Covid last month. Mine was worse than his, I had a cough and fever for 14 days, took to my bed the whole time. But, we both have pretty much recovered for which we are grateful! No idea how we got it as we faithfully practiced all the covid safety guidelines.

    Aprilgirl, that's so interesting to hear your sales in real estate were the best ever in 2020 and was wondering what reasons you attribute that to.


  • elderberry
    elderberry Member Posts: 1,067
    edited February 2021

    amontro: Hello hello hello. 12 years! WOW! You give all of us hope. Keep posting when you feel inclined.

    sandibeach: you do look like a teenage in that reflection. Okay -- maybe a twenty-year old!!

    And hello to all of the rest of you.

  • Bliss58
    Bliss58 Member Posts: 938
    edited February 2021

    Divine, omg! What a tough go. So glad you and hubby recovered well. Being careful and not even knowing how you were exposed shows just how sneaky this virus is. I heard this morning I'll be eligible for my 1st vaccine March 5. Can't come fast enough for me!

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,251
    edited February 2021

    I just got back from my post-op appointment. I am healing well but if you ever hear your doctor use the words sinus and vacuum in the same sentence, run! I swear they vacuumed out part of my brain. It was painful (despite numbing) and gross, but I do feel better now 😊

  • aprilgirl1
    aprilgirl1 Member Posts: 798
    edited February 2021

    Caryn - that sounds very uncomfortable, ugh! Good to hear that you are healing well!

    @Divine - quite a few real estate markets had exceptional growth, despite covid. In my market real estate sales came to a screeching halt while both buyers and sellers held their breath and had to regroup in late Feb/early March. Many people had to change plans and cancel travel. After a month or so, we were inundated with both buyers and sellers. Many people decided to make major moves to either be closer to family or have a better "quality of life" and move from big cities to our semi-rural town which is close to Seattle but far enough away that we don't have the urban issues Seattle is experiencing. With most employers allowing people to work from home, a 35 minute daily ferry commute is no longer an issue. We are less expensive than Seattle and have great public schools so that attracts a lot of people and families. It's been very interesting!

  • divinemrsm
    divinemrsm Member Posts: 6,606
    edited February 2021

    Bliss, happy to hear your vaccine eligibility is coming up soon! We all look forward to pulling out of this pandemic!

    Caryn, the procedure does sound very unpleasant but its good you’re healing nicely and hopefully within a month you won’t be able to even tell you had the surgery other than you can breathe freely and no longer have the headaches.

    April, I love learning interesting insights from realtors. Dh and I always follow the real estate trends in our little town, checking out Realtor.com to see what’s on the market even tho we are not buying. Of course we’re nosy, curious what they’re asking for houses, what they look like inside and how much they eventually sell for.


  • Bliss58
    Bliss58 Member Posts: 938
    edited February 2021

    Caryn, that procedure does sound very unpleasant indeed. Happy to know you are on the mend and feeling better.

    We sold our house recently in about nine days for a ridiculous price, but we're in a very desired ski resort location. I never dreamed it would sell so fast. Now we're kind of scrambling with what to do. Rent for a while? My husband worries the market is too high to buy because he thinks it's going to bust. So far, apts we've seen are unimpressive for high rent.

  • sondraf
    sondraf Member Posts: 1,679
    edited February 2021

    Everyone wants a house now since WFH will be a new thing. Which - great for those of us still working with MBC (Its wonderful to have the option to go lay down if I need to) and I am happy in a way that a pandemic has brought about this major employer shift. But here in the UK the government also goosed the market with a tax holiday and everything shot up in price yet again. So we save/invest our money and look at US properties.

    When bored at work a friend and I play "Lets Look at Zillow!". He picks a random town in the US (he went to Penn State for his PhD so he has a reference point for the US) and then I look for the nicest house on the first page for about the same amount as a two bed flat in needs-updating condition in a high to moderate crime area of London, with no garden. So about $650K range. Yesterday we looked at a Norfolk, VA house that had its own MIL apartment over the garage, 6bed rooms, 5 baths, a boathouse and dock, and water access on like an acre, in beautiful updated condition and new three zone HVAC.

    Bliss - same concern over here. Just how much higher can the market go? No one is getting raises or bonuses this year (unless you are in hedge funds), more than a few are still in furlough, and quite a bit of the higher earning finance jobs are leaking out to Europe. But in the US some strong retail numbers were posted yesterday due to the stimulus and there will likely be a refocus onto green, biotech, and other new jobs where the facilities/companies already exist and competitors will enter. Gut feel is the US is on precipice of a solid step change forward (hate to say boom, but could be). Obviously location dependent!

  • amontro
    amontro Member Posts: 185
    edited February 2021

    exbrnxgrl - If you feel better after what you had to go through, it may be worth it. Some of us stage 4s, including you I'm sure, had to go through some grueling procedures to get to where we are today. Let us know how well you are doing. You know, a progress report!

  • Lost47
    Lost47 Member Posts: 20
    edited February 2021

    Thanks for posting. I don’t think your bragging I think it’s wonderful. Thank you for making me feel welcome and posting on my thread. Even though I learned 3 months ago this would be my fate I’m making plans to go to Costa Rica with my family. Obviously for me this may be a year off due to getting used to the new me. I love travel, it’s beautiful to see there’s hope cancer won’t take that from me.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,251
    edited April 2021

    Hello friends!

    I hope you’ve all been well and enjoying the beginnings of spring (if that’s your current season). I am happy to report that I am fully recovered from surgery, save for the occasional dissolvable stitch that comes out, undissolved, when I blow my nose. A bit gross but everything else has resolved! No headaches, I can smell and breathe freely and generally feel much, much better.

    We’ve been back to in person school for six weeks, though not full time. I am in heaven! Teaching on Zoom was better than nothing but very limiting and one dimensional. Not very suitable for first graders at all! We have on site Covid testing every other week and I believe that almost all of the employees of my district have been vaccinated. I feel entirely comfortable teaching in person.

    Apparently neither mbc nor a Covid19 vaccine have any effect on clumsiness which has afflicted me since childhood. I slipped on my bathroom floor today which was wet due to my rinsing a weekly deep conditioner out of my hair while kneeling beside the tub. I hit my tailbone, though not too hard, on my bamboo floor. Bamboo is very slippery I discovered. Then as I was drying my hair, the diffuser popped off and landed very hard on my big toe. Ouch! That is some hard plastic. At that point I decided to let my hair air dry rather than risk further bodily injury.

    I hope all who celebrate had a happy Easter. This upcoming week is my spring break. Nothing exciting but lots of household chores that need to get done.

  • spookiesmom
    spookiesmom Member Posts: 8,178
    edited April 2021

    Happy the surgery went well, but think maybe you should get some bubble wrap for yourself. Stay safe😎

  • amontro
    amontro Member Posts: 185
    edited April 2021

    exbrnxgrl -Glad to hear you're on the mend. I, too, kneel over the tub to wash my hair! I'm so afraid that one of these days I won't be able to get up, even though I installed a grab bar. Don't do anything too risky on your week off.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,251
    edited April 2021

    Thanks, amontro!

    I realized that this is the first time in a year that I have spent some “normal “ time with one of my grandchildren. Yes, I know that I have been lucky in that both of my dd's and family live nearby so we became a little pod but we only gathered at each other's homes. Today, I took my 9 year old granddaughter to the Japan Town area of San Jose. We live nearby but it's always a fun place to explore. We visited our favorite supermarket and bought a bunch of Japanese snack foods though we weren't always sure what they were. Then we got some boba/pearl tea drinks, found a bench in the sun and had the best time taste testing the snacks. We even had a small bag of Doritos made for the Japanese market. I thought they were an odd cheese flavor but my granddaughter loved them. We laughed so hard , we cried. It was so simple but really so extraordinary after living such cloistered lives for the past year. Do we dare hope for a bit of return to normalcy?

  • divinemrsm
    divinemrsm Member Posts: 6,606
    edited April 2021

    Caryn, sounds like heaven and just the kind of activity I would do with my own grandchildren, or even my son! So hoping that, yes, we will return to normal.




  • sunnidays
    sunnidays Member Posts: 163
    edited April 2021

    I think people are forgetting the impact of the likes of palbociclib and other bociclibs on the treatment I am newly diagnosed MBC and am reasonably optimistic that i will live a good few years I could be wrong who knows but at the moment I am happy enough.

    What I think is going to happen is that in the future treatments will control it for longer and longer although side effect may be a big issue but possible there may never be a cure, by the time my oncologist retired she might be in a position to say we can control this for 20 years meaning that if a woman or a man come in to her with MBC in thier 60s they will most likely die with it and not of it.

  • seeq
    seeq Member Posts: 1,166
    edited April 2021

    Sunni - I don't think anyone is forgetting the CDK blockers. They are an amazing advancement that have helped many. And, not everyone has as great results, or for as long as others. Every cancer is different, and we all respond differently to the drugs. That being said, I think we can find/make our own happiness for as long as possible. I plan on being around at least a few more years, so I intend to enjoy it. My garden is started for the year, we're planning family visits, camping trips, and a house-hunting trip in the next couple months. I have stuff to do! :)

  • aprilgirl1
    aprilgirl1 Member Posts: 798
    edited April 2021

    Exbrnxgrl, that sounds like a fantastic day !

    I am 18 months with my MBC dx . My husband and I bought tickets for the 2023 Rugby World Cup in France . Tickets sell out quickly so I am throwing caution to the wind hoping I am still doing well!

  • elderberry
    elderberry Member Posts: 1,067
    edited April 2021

    Hey, real and virtual house hunters: I used to look at properties in Nova Scotia. Big houses with views of the Bay of Fundy were about a tenth of what my property is worth here in the Greater Vancouver area. Our prices are INSANE. My tiny old house isn't worth the proverbial plug nickel but the dirt is assessed at the $1.2 M range. (33 x 120 ft lot) Million!!! I am on paper rich even if I am a civil servant pensioner "getting by". I love my neighbourhood and where would I go if I sold my place? I like being close to amenities and health facilities in particular these days given my age and health. I think Vancouver is up there with the most expensive places to live in the entire world - CRAZY

    exbrngirl: ouch!! A series of unfortunate events. When I have had an episode like that I usually tell my DH that I shouldn't be allowed near sharp objects for awhile. One cannot be too careful ;-)



  • aprilgirl1
    aprilgirl1 Member Posts: 798
    edited April 2021

    Elderberry , I'm not far from you in the Seattle area and the real estate market is insane , even more so compared to last year and we didn't think it would top that ?! My husband is a US citizen but went to high school in White Rock. We adore all of Vancouver although it sure is $$$ now. We look forward to the border opening so we can visit with his high school friends

  • seeq
    seeq Member Posts: 1,166
    edited April 2021

    Aprilgirl, Wow! That sounds like a great trip b good for you!