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

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  • Bluefrog76
    Bluefrog76 Member Posts: 260
    edited June 2016

    GatorGal: I leave for Chincoteague tomorrow for the first time. We live outside Philadelphia but my friend always vacations there and is taking me and my kids as an early 40th birthday present. Will be sure to post pictures!

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited June 2016

    Gatorgal, we are contemplating selling our long time home soon and it will be hard. So I can imagine how you are feeling. I hope I can get my head to recognize the excitement of a new chapter and hopefully new adventures. Speaking of Kandy, How are you getting around these days? Hope you've thrown that walker to the curb and getting out in your fabulous garden!

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  • Kandy
    Kandy Member Posts: 1,461
    edited June 2016

    Thanks for asking Artistatheart. I am doing okay, not great. I have now graduated to a cane. I can walk without anything some like around the house but I have a terrible limp still. Which gives me a terrible back ache. I am so much better than I was before surgery so I am thankful but still not where I want to be. The surgeon thinks that it will get better but it will be slow to see results. I am able to get out and enjoy our yard. I started swimming in the pool every day which has helped a lot. We all think that I have lost all muscle tone in that leg, hopefully as I get it back, the limp will go away. Surgeon still does not want me to do physical therapy cause I am high risk for hardware failure. So I am happy with results just not thrilled.

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited June 2016

    It is so frustrating when any aspect of our mobility gets sidetracked. I broke my ankle a few years back. Since I am such a get up and go at it person, it drove me nuts to be encumbered. I too have walking issues due to poor ankle joints which the meds aggravate further. NOTHING compared to the surgery you went through but I do need low impact excercise. I try to get on my bike when I can but swimming is the best. Having a private pool would be glorious. We have one at our HO clubhouse I can go to but then I get all the school kids jumping all over me! LOL! Maybe a good reason to move to a warmer climate! Well keep on swimming and moving Kandy. You will soon have your little man to chase!

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  • GatorGal
    GatorGal Member Posts: 2,550
    edited June 2016

    blue frog, have a great early birthday and fun times at Chincoteague. How nice for your friend to take you! I'll be sure to look for pictures!

    Kandy, I know when we first became friends on Bco and you told me about your upcoming surgery I was wondering how anyone could get through something like that. You've come a long way and you will keep making progress. So good that you can swim. Every day will see some little improvement. We are all in your corner!!

    Artist, making the decision is the hardest part. You will know when (and if) it is the right thing to do. It will just feel right. Don't do it if it doesn't! For us, it was definitely the right thing to do. Now we will have a little extra money and we are going to do some things we've been wanting to do but couldn't afford to do! I'm on Ixempra now, very three weeks, and think I will be able to fit a short trip in every once in a while!! Waiting to see how this first treatment plays out and how I feel.

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited June 2016

    Gatorgal, I know it is the right thing to do. As long as we get a decent offer we are going for it. It would be easier if we had a better inventory of smaller homes in our community. But who knows we may just luck into the perfect one. Then we will be able to afford more trips too! My scans show some slight progression so I am going off of Faslodex and onto Arimidex/Ibrance. Pretty disappointed I only got 5 months out of that one as it was so easy and I don't want to blaze through treatments.....Best wishes on the lxempra. I hope it is easy on you and yu get a BUNCH of trips in!

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  • Kandy
    Kandy Member Posts: 1,461
    edited June 2016

    Gatorgal, Thanks always for your words of encouragement. I'm trying to not get discouraged over it. I really thought I would be back to normal by now, lol. Hopefully some day. I hope your treatment is the right ticket. Thoughts and prayers with you.

    Artistatheart, I hope you get an awesome offer on your home. The right house will surely turn up at the right time. Sure hate you heard the word progression. Prayers that your new treatment kicks it back to the curb.

    Wishing everyone the best.

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited June 2016

    Thanks Kandy, Luckily it also had the word "slight" so it could ALWAYS be worse huh? Just hate burning through treatments so fast. But it is what is is and I bounced back OK today. The new pill made me pretty nauseous today though. Probably needed more food in my stomach. Get a second opinion (again) on Thursday just to be proactive and get familiar with another Dr.

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  • GatorGal
    GatorGal Member Posts: 2,550
    edited June 2016

    second opinions are always a good idea. I had a second opinion last fall after being treated over 7 years and going through a lot of different treatments. The 2nd opinion doc recommended Ixempra and I've been wanting it ever since. They didn't have it at my infusion center but now they do. Could be my pushing for it or maybe the 2nd opinion doctor bringing it to my onc's attention. Lots of new stuff out there and for that I am grateful. I have that fear that I will run out of options. Artist, hope you get something you can benefit from on Thursday. We have to be proactive but it wears me down sometime. I just want to be taken care of sometime. Praying the right house comes along for you. I am impressed when I read through the threads at how knowledgeable we all become and how much positive energy I find here. We are some pretty awesome women

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  • Peanut0110
    Peanut0110 Member Posts: 40
    edited June 2016

    Artistatheart Falsodex failed for me after 4 months and I also liked it because I had no side effects. I am now on Xeloda. I agree with GatorGal about how knowledgeable everyone is and how I always get positive energy from you all

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  • Texasrose53
    Texasrose53 Member Posts: 354
    edited June 2016

    Gatorgal....you got that right! We are some pretty AWESOME WOMEN!

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  • Lovelife49
    Lovelife49 Member Posts: 59
    edited June 2016

    I was just catching up on this thread after not reading it for a couple months. First of all, congrats to Caryn on that beautiful grandchild! What an adorable child. Color me envious! ;-) Kandy, the countdown is on for your special bundle of joy! I can't wait to see your pics soon.

    I enjoyed seeing all the cars and enjoyed the sentiments attached to the reasons for buying, too. And I'm super impressed with how long some of you keep your cars! I guess our big city life/high mileage living doesn't allow for that. I was the same way at the time of my diagnosis last year in that I didn't want to spend on ANYTHING. There wasn't any good reason for that feeling other than thinking life was over or something like that. But since then, I've bought two new cars (one daily car and also a convertible), and my husband bought a Porsche. It helps that my hubby is a car person and would have a Jay Leno-like garage if he I'd let him/he could afford it. I don't know if any of you have seen "The Big C," a show about a stage IV melanoma experience starring Laura Linney (I think it was on Showtime), but she does this in the show, buys a "cancer car." Then she ends up storing it away in a storage unit for her son. It was a great show. I think ultimately the way we all are moving on is normal. Procuring things we will have for a long time means we expect to be here for a long time. Actually, I owe that sentiment to an optician who told me that when I bought a couple too many pairs of eyeglasses recently. I remarked that I had overdone it, and she said she thought maybe I was just planning to stick around and wear them all. Very insightful! I think I'm over the spendthrift phase, though, and back on a more sensible road, which is a good thing! :-) My dream would be to drive the convertible from one side of the country to the other. Too bad I have to start in the middle, ha.

    Artist, I hate that you're going through the slight progression. I hate it when anyone does, but you're so especially sweet and nice and helpful, and I really hate it that you have to see that "P" word anywhere on your scan report. I hope the new treatment knocks it right back to NED.

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  • dAd
    dAd Member Posts: 94
    edited June 2016

    I would like to highly recommend a television interview with a 37 year old woman with stage IV breast cancer with liver and bone mets. Although I am only stage III, I was blown away by the extraordinary courage of Teva Harrison who has also written and illustrated a book about her experience living with this disease. The book is called "In-Between Days" and the interview can be watched at:

    http://tvo.org/video/programs/the-agenda-with-stev...

    I would very much like to hear from those of you who watch the interview and/or read the book.

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  • Texasrose53
    Texasrose53 Member Posts: 354
    edited June 2016

    dAd...thank you for sharing that interview with us. I watched it, and I think she reflects the feelings of so many of us. The courage that we have and the hope that we have. As stated earlier by GatorGal....we are Amazing Women!

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited June 2016

    Gator and all, We are SO awesome for sure! I think we are all afraid of the day we run out of options.....It does wear you down to try and keep up on everything. People with very up to date doctors who are super pro-active in their patients care are very lucky! Instead of the right house my DH keeps pushing me to get an RV and "travel the country". I have told him a few times now that that is just not me. I need a homestead to land in. Hello to Peanut! Oh thanks Lovelife, I like everyone having a scan was hoping for better news. But all we can do is keep going right? Texas, we ARE AMAZING! Cheers to all

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  • Peanut0110
    Peanut0110 Member Posts: 40
    edited June 2016

    Hello all. So the other day I celebrated with a friend, her last day of chemo. We surprised her with a pink limo. We had pink champagne and it took us to a Resturant where we met up with other coworkers. It was a lot of fun, now that gets me thinking that We all should have a party every time there is a new chemo for us to start.

    image

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  • Shutterbug73
    Shutterbug73 Member Posts: 791
    edited June 2016

    dAd - Thanks for sharing that link, I can't wait to watch her interview. I stumbled across her work early in my diagnosis and it really resonated with me, but I lost her name and couldn't find it again. I'll be ordering her book for sure!

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited June 2016

    Peanut! How awesome is that pink limo! What a great idea! Sound like you are blessed with a great group of friends! dAd, Boy that interview really hit the nail on the head. She spoke my feeling exactly. I will get the book too...

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  • Peanut0110
    Peanut0110 Member Posts: 40
    edited June 2016

    Yes, that interview was really to the point and I am planning on getting the book also.

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  • Andi67
    Andi67 Member Posts: 423
    edited June 2016

    I love that Pink Limo! I have never seen anything like it. I too watched the interview and thought she hit the nail on the head. Such honesty. I am planning to get the book as soon as I finish Radical Remission. I can only handle one cancer related book at a time...I have to mix it in with my other reading.

    XO

    Andrea

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited June 2016

    Yes Andi ME TOO! Need some decent entertainment mixed in there...

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited June 2016

    It's been very hot here in Silicon Valley, so we decided to cool off at the pool. Frankie loves to swim and was excited to see baby Miles all kitted out in tiny swim diaper and rash guard. However, Miles decided that a little nap in the shade (in mama's arms) was a better idea. In the second photo, I pulled off a very successful photo bomb.

    image

    image

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  • jensgotthis
    jensgotthis Member Posts: 937
    edited June 2016

    love the photo bomb!!!!! You all look so happy

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited June 2016

    So cute Caryn! I have never photo bombed but think it's about time....

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  • Kandy
    Kandy Member Posts: 1,461
    edited June 2016

    Caryn, love the pics. Nothing better than a pool to cool off, unless you are Miles then napping is better. Enjoy those grand babies.

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  • Texasrose53
    Texasrose53 Member Posts: 354
    edited June 2016

    Love the Pictures!!!

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  • Texasrose53
    Texasrose53 Member Posts: 354
    edited June 2016

    So...Life does go on when you are stage IV.......last week I took a big jump and announced my retirement! I have worked for 3 different companies at the same location (Nuclear Power Plant) as an Administrative Manager and HR Manager for 31 years. The only time I have not worked since I was 14 is when my 2 children were born and then I only took 6 weeks with each of them. My husband retires this Thursday and it was going to be so hard to get up at 4:30 a.m. to go to work with him still in bed. So I made the decision to retire with him and to "Live Life" while my body is still in good shape! I was diagnosed 14 months ago as Stage IV with mets to lungs and sternum. I still feel as good as I did on that day and figured I needed to do the things I want while I physically can, hoping and planning on that being many more years with Gods help. I currently work 4/10's a week and drive 1 hour each way to work, and that has added a little fatigue into my life. After diagnosis I continued to work because it was my normal. We are financially stable and do not need my income to do the things we want. So on July 28th (I gave them 5 weeks notice). I thought I would be scared....but I am not, instead I am soooo excited!! We already have 4 trips planned in the next 3 months. LIVING LIFE!!!

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  • Kandy
    Kandy Member Posts: 1,461
    edited June 2016

    Texasrose, Congratulations! I am so happy you made that decision to retire with your husband. I hope y'all are able to enjoy those trips and many more. Enjoy every moment.

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  • GatorGal
    GatorGal Member Posts: 2,550
    edited June 2016

    texasrose, congratulations on your upcoming retirement! Do fun stuff!!

    Caryn, enjoyed the pics, especially the photobomb!

    Took my Grandson and one of his friends to six flags on Monday. I took my mom's walker which was a very smart move. I followed the boys at my pace and could sit down in the shade whenever I wanted. Although walking is not a problem for me, breathing AND walking causes me such fatigue! I took the walker as a precaution thinking I could leave it in the car but was so glad to have it.

    I enjoyed watching my grandson have fun. Love that his mom let's me have my son's visitation! She is a gem!


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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited June 2016

    Caryn, such a wonderful full of life picture. It really made me smile.

    Texasrose congrats on retirement. I hope you have many years of r and r and great travels ahead.

    Speaking of travels, ticking off a huge bucket list item. Leaving in a couple of hours, with my DH,DD and DS (well maybe not so D on that one.. Lol) for an African Safari ! Highlight of the trip.. Trekking to find gorillas in Rwanda, which includes strenuous all day hiking. I can tell you now, I will feel very much alive and very grateful for the beauty of the natural world I am about to encounter. Luckily it's at the end of the trip, so if it does me in, at least I can come straighthome after. I will return in a few weeks with a couple of pictures.

    You all be well.

    Stefanie

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