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

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited February 2017

    And Shutter, Hurrah for stable!!!!

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  • Andrea1111
    Andrea1111 Member Posts: 14
    edited February 2017

    Hi. How are you doing now? I was just diagnosed stage 4 mets BC.

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  • Andrea1111
    Andrea1111 Member Posts: 14
    edited February 2017

    How are you doing now?

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited February 2017

    Crazy 36 hours:

    1. I do not have cataracts. I have glaucoma in both eyes. The right eye is worse, with some permanent damage to the optic nerve. I now have to use of different types of eyedrops twice a day and a pill twice a day. I have to go back to the doctor tomorrow to see if the meds are deceasing the pressure in my eyes. Still a bit stunned.

    2. Relaxing in my living room last night when I heard the sound of water lapping outside, as if I were lakeside. Looked out the window and the street looked like a river. Packed a backpack quickly, leashed up dogs and walked about a block (in waterproof boots) to higher ground where my SIL picked me up and took to me to their house. This was about 9:00 pm. By 10:30 pm, evacuations were mandatory.

    3. DD drove me to PET scan this morning. No news yet. After the scan we drove by my house and the water had receded. It appears that the water never quite reached my house (yeah!). Went and had lunch with a friend who was just dx'ed with spinal mets (boo!)

    4. Went back to dd's house. picked up dogs and came home. More rain expected by Friday so lets hope that the creek and spillage from the reservoir goes down before that. Now I just need to unwind a bit. At least I didn't have to work this week (President's Week vacation)

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited February 2017

    Holy cow, Caryn, I don't know where to begin.

    You have had quite a bit happen in 36 hours. Is it common to have glaucoma in both eyes? What is the prognosis? Were there any early indications in previous exams?

    I have been reading all the reports of the flooding out there in California and had hoped that it was staying clear of you and others I have grown to know here. I am glad that the water did not reach your house. The damage, of course, can be overwhelming. Were any of your neighbors' homes flooded?

    I am sorry that your friend has spinal mets, but she is lucky to have you by her side. You understand everything she is going through.

    I hope you get good news about the PET scan. Do you know how soon you will receive the results? I know that the waiting is awful.

    I pray that things turn around for you and everything goes well now. You are certainly having an eventful vacation, but probably not at all what you had hoped for.

    Hugs to you,

    Lynne

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited February 2017

    Wow, Caryn. What a collection of events all at one time. I am sorry to hear about the glaucoma. I hope the medicine can do its work to bring it under control.

    The flooding sounds crazy. I am glad you have relatives who could help you and your dogs with a place to stay. Sure hope the flooding subsides and that your home is not damaged by it.

    Sorry to hear about your friend with spinal mets. Fingers crosses that you get a good report on your PET scan

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  • dlb823
    dlb823 Member Posts: 9,430
    edited February 2017

    Ohmygosh, Caryn! So sorry about the eye issues. Hopefully, they've caught it in time to minimize the damage. And how frightening that sudden flood must have been! Prayers that any eminent storms diminish significantly before they get here! And prayers for NED or NEAD scan results. (((Hugs)))

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited February 2017

    Thanks everyone. My PET scan was great and I remain NED. I had a minor laser procedure on my right eye today to help decrease the pressure. It was fairly easy but I was at the doctors office for three hours (exam, put drops in, wait an hour, procedure, wait thirty minutes, test pressure...). I will have the same procedure on the other eye next Thursday.

    As for flooding, my neighborhood got off easy, with just streets and lawns under water but it appears that no water reached our homes. they must have distributed sandbags after i left for dd's house as I noticed that many neighbors had them piled up at their front doors. Thanks again for your concern and good wishes.

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited February 2017

    Caryn

    Glad all is good   Your plate is officially full!

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited February 2017

    Caryn, so glad your house did not flood on top of everything else. I hope all the meds and care bring the glaucoma under control for you. Teachers need those hawk eyes. Sorry to hear about your friend...She is lucky to have someone in her life who understands all of this. Hope the rest of your vacation is uneventful. I was also on ski skate week from work except I had to make up 3 snow days so only got 2 off. We had a few mudslides on the Hwy and a 24 hour power outage. But today the sun is shining despite the frigid temps. A silver lining....

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2017

    Crossing off another living list item or two by spending a few days in Iceland and I just had to share that I got to see the northern lights last night. I won't lie...I teared up a bit with each swirl of light (which isn't a great thing to have happen as cold it was, lol). I don't have a good camera, but it did manage to capture it somewhat.

    image

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited March 2017

    nbnotes,

    So jealous! Seeing the Aurora Borealis is something I would love to do. I was thinking about cruising up the Norwegian coast on Hurtigruten some day. So glad you've had a wonderful time. I'm trying to get my summer plans in order. Will probably go to NJ to be with family and then meet a friend and go to Montreal, from NYC via train, with a close friend. But for now, it's back to report cards...

    PS: I am going to Palm Springs later this week for a professional conference but will be sure to work in plenty of leisure time !

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited March 2017

    NBNotes, how cool to see the Northern Lights. What an experience and I don't blame you for the tears.

    Caryn, good idea to work in a bit of leisure time in Palm Springs!


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  • Wendy3
    Wendy3 Member Posts: 1,012
    edited March 2017

    NB so beautiful thanks for sharing. I remember the first time I saw them in Canada I cried to.

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  • babs6287
    babs6287 Member Posts: 2,021
    edited March 2017

    NB. So beautiful. Thanks for sharing!!!!

    Bab

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  • Lita57
    Lita57 Member Posts: 2,437
    edited March 2017

    xbrnxgrl - Joshua Tree National Monument is only about a half hour out of Palm Springs. Be sure to go there if you can. Because of all the rain, the desert is going to be in bloom. Anza Borrego Park, also in that area further south, is already in bloom. It should be spectacular.

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  • GracieM2007
    GracieM2007 Member Posts: 1,564
    edited March 2017

    NB what an incredible thing to have witnessed! I've never seen them, but would definitely tear up

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited March 2017

    Thanks, Lita. I have been to Joshua Tree before and I love it. I did hear that the wildflowers were amazing this year. I hope I do have time for leisure as this conference is jam packed during the day and I've been invited to parties and dinners every night. It's always nice to get away from home for a few days.

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  • Lita57
    Lita57 Member Posts: 2,437
    edited March 2017

    My daughter has given me permission to post this final exam documentary project that she did last year for one of her classes. She wanted to document my struggle: http://www.micaenglandphotography.com/work#/metavivor/

    We are now collaborating on her final portfolio. During her winter break, our family spent a few days in Joshua Tree, where she photographed the landscapes I love so much. She has also been photographing my body and the changes the chemotherapy has made, all in black and white. Will post those when we're finished.


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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited March 2017

    Lita,

    What a touching, but brutally real, tribute your daughter has created. You must be very proud of her! BTW, my favorite part of Joshua Tree is the rock formations. They are very other worldly.

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  • Lita57
    Lita57 Member Posts: 2,437
    edited March 2017

    exbrnxgrl...the rock formations look like Pebbles and Bam-Bam were playing with blocks...way too sophisticated for Fred Flintstone and Barney Rubble to grapple with.

    Yes, if nothing else, my DD may build her photo career from this experience...all things work together for good, as the verse goes.


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  • Freya244117
    Freya244117 Member Posts: 603
    edited March 2017

    nbnotes, I am so happy you made it to Iceland and got to experience the lights. I was supposed to leave in 3 weeks for my Scandinavian and Iceland trip, but had to cancel it last week. I was holding out hope of still going till the last minute, but it wasn't meant to be.

    You live with bone mets for years, start thinking you can live forever, plan things for a year in advance even lol. Then, instead of a slow progression, it's a whirlwind.

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  • GracieM2007
    GracieM2007 Member Posts: 1,564
    edited March 2017

    That is just incredibly beautiful Lita! Your daughter is truly a blessing and her love for you shines out from those pictures and captions

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited March 2017

    Fantastic nb! What a great thing to experience! Freya, that just stinks...I'm sorry you had to miss your trip.I hope your next treatment kicks but and you plan something else soon.

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited March 2017

    Lita, I just got a chance to read the link you posted of the photos and accompanying words by your daughter. It is so nicely done, the documentary style with pictures and I very much appreciate that it isn't a massive pink hoopla of the warrior woman. It presents much more realistic, down to earth insight into what this experience is for many of us. How touching for you to have this kind of close bond with your daughter. And it is so nice to see your caring husband as well.



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  • Lita57
    Lita57 Member Posts: 2,437
    edited March 2017

    Thanks, Divine. DD is disgusted by the pink hoopla as well. So many women who were initially d'x with Stage 1 or 2 eventually get Stage 4, and then there are those of us who get Stage 4 right from the start. As a friend once said, "We can send a man to the moon and make smart phones, but we can't find a real cure for cancer." Maybe we need to start marching in the streets like people did back when HIV/AIDS took so many thousands of lives back in the 80s. HIV is now a chronic but manageable disease. I have gay friends who've been living with HIV for 20 years and are doing just fine. But every year more and more women die from cancer, and their names are listed in the memorium thread.

    DD's final portfolio is in the draft stages, juxtaposing landscape photos of the desert with my changing dried up body (the chemo takes a lot out of us - hydration and lots of moisturizer can only do so much). I previewed some of the shots and they are quite powerful.


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  • Micmel
    Micmel Member Posts: 9,450
    edited March 2017

    Lita57~ truly enjoyed viewing her project. Very special and such talent. My daughter is 21 and I realize she suffers and worries about me and it sucks the air right from my body. It shows strength,love honor and a level of closeness only a daughter and mother can share. God bless you both. Thank you for sharing. Lovely family.

    Rest well ladies ~ M~

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2017

    Freya - I'm so sorry for both the trip and the whirlwind that you are dealing with!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2017

    Lita57- What a beautiful project!

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  • Micmel
    Micmel Member Posts: 9,450
    edited March 2017

    Divine~ I had to chuckle at your mention of pink hooplah! I truly did like pink once upon a time. Now I hate it. I don't like anything breast cancer ribbon. It's just a reminder of everything I've gone through and the fear of going through more suffering. As we all have I know. Boy do I know. My husband and I donated many mastectomy pillows to the hospitals for the patients and I told him, please do not come back with any breast cancer ribbon crap material. No pink. After we went through all the fabric to make the pillows. I mustered up some energy to go get some More fabric. I admit I ended up picking a darker but non symbol pink fabric, but it was lovely. I don't want to be stuck with cheery happy pink ribbons, when All I can think of is, has it spread? Have a restful day ladies.

    ~M~

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