2017 Diagnosed-- A Place To Share "What's Next"

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  • rljes
    rljes Member Posts: 547
    edited December 2019

    DodgersGirl, wishing you peaceful thoughts. I'm so sorry to hear of your news.

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  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited December 2019

    rljes- thanks. The funny thing is I had just had my final visit with my BS and had an appointment with MO. I was far enough out from initial treatments that my doctors felt I could have my port removed. (My cancer clinic likes ports to stay in 2 years, just in case). I literally had the talk about removing my port. I had a phone number to call to schedule the removal just didn’t want to do the right before Thanksgiving. Now, I see that was a good choice as I don’t have to have the port reinserted.

    Hoping I/L gives me some stable time. It’s weird realizing I will be on a treatment plan for the rest of my life. It’s also amazing what the human body can adjust to

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  • pink_is_my_colour
    pink_is_my_colour Member Posts: 308
    edited December 2019

    I'm speechless DodgersGirl. My first reaction was shock, then tears to hear this devastating news. How and why are the only words I can say? It just seems so unfair. I have no doubt you will get through this. You're an amazing woman.

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  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited December 2019

    pink_is_my_colour— thanks for the kind words.

    We baked Christmas cookies at my dad’s yesterday, creating memories with family. Cookies taste great!

    My mom passed away January of this year. My parents were married for 65 years so it’s a tough Christmas anyway but a bit more stressful with my diagnosis. I think my dad really enjoyed having a house full of holiday chaos while doing “Christmas” things. My back pain today is a nagging reminder of my diagnosis but am really glad we spent yesterday making memories!!


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  • Castigame
    Castigame Member Posts: 752
    edited December 2019

    Dogersgirl,

    I am so.sorry sending hugs and prayers.

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  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited December 2019

    Castigame- thanks. We have sure been thru a lot since dx in 2017.

    How are you doing?

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  • Legomaster225
    Legomaster225 Member Posts: 672
    edited December 2019

    Dodgersgirl, I am so sorry to hear this. It is not fair! Just when you think things are going well a curveball comes flying at you. Nobody understands that better than the women here. Metastasis is always on my mind and I know it is just a matter of time. Praying that new treatments will relieve your back pain and hold off this insidious disease for a long,long time. We are here to support you. Anger, frustration, sadness, fear, whatever you need to talk about we are here for you

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  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited December 2019

    Legomaster225- thank you s much.

    I realized this morning that I have stupid cancer cells munching on my vertebrae and I am not doing anything yet to stop them. That is a very weird realization. Rationally I understand. I haven't finished the diagnostic scans so we don't yet have a picture to dictate where to start. MO says I can't start I/L until I have finished rads to my thoracic spine. I go in on Friday for simulation. How long til real rads? No idea. Will RO see a different path forward? I have a PET scan Thursday. MO expects more mets to show. I have a brain MRI in 2 weeks. Praying it's clean. I think I need a plan and need to start it

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  • Legomaster225
    Legomaster225 Member Posts: 672
    edited December 2019

    I'm praying with you!! It never moves fast enough in the beginning. Once treatment starts you will again feel like you have some sense ofcontrol. Worst feeling ever right now though. I'm really sorry.

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  • runor
    runor Member Posts: 1,798
    edited December 2019

    Dodger, what a horrible way to enter the Christmas season, which I find even more alienating. My cancer happened right after Christmas and then the following Christmas was taken up with the mess after a mamm said, "it might be scar tissue or it might be cancer that was not surgically removed".  For me, I think these negative associatiopns are triggered by the holidays and while everyone is jolly and joyful I feel like I'm being sucked into a small, round lump, removed and separate from everyone. I know I'm not explaining this well. I just feel bad for you that this is happening when the expectations of levity and joy are at an unsustainable level. Hugs. 

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  • Scrafgal
    Scrafgal Member Posts: 631
    edited December 2019

    Another Christmas diagnosis here...December 23, 2016.,biopsy...waited over Christmas for results delivered on Dec 27th: breast cancer!!!

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  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited December 2019

    here it is 8 days til Christmas. I still have a bunch of things to wrap. May or may not get done this year. I do have a tree up with lights but I haven’t pulled out any ornaments. All of this is nearly impossible with the pain in my back.

    Not a single decoration outside either. I have gone from a house that people drive by to see the lights and decorations, to a winter blah house where everything looks dead outside.

    None of this is due to depression. Just can’t physically handle it this year. And really don’t have anyone in my family who could step up to handle. 2019 will be a memorable one for sure.

    But at the end of the day, we will all meet at my dad’s (minus mom, who passed in 2019) and we will celebrate a different kind of Christmas, appreciating those who are still here and remembering those who aren’t.


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  • Annbee
    Annbee Member Posts: 208
    edited December 2019

    That is what Christmas about- family and remembering the ones who are not. I was given the family ornaments over 20 years ago and if it wasn’t for all the memories on the tree I might have passed in decorating a tree a some years.I don’t have lights outside in my house this year. I can’t get them down or hang them by myself anymore and it seems the kids and hubby are a bit too busy but it is ok. I am thinking about you a lot and sending tons of positive thoughts. I hope the pain is manageable.

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  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited December 2019

    Annbee- thank you so much.

    You know the lack of outdoor decorations and such could simply be related to getting older. DH needs a knee replacement so he shouldn’t be climbing ladders and neither should I

    I am playing Christmas music while I work today. Still enjoy the music.

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  • Annbee
    Annbee Member Posts: 208
    edited December 2019

    love Christmas music. We have our holiday show tomorrow at school and I am so looking forward to it. You are right about ladders.

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  • Scrafgal
    Scrafgal Member Posts: 631
    edited December 2019

    Over the years, I've made my decorating life easier too...It's definitely age with me. I grew up with a real tree every year, but I caved and now have a nice artificial tree that is SO easy....I burn the balsam candle and use my vivid imagination!!!

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  • Legomaster225
    Legomaster225 Member Posts: 672
    edited December 2019

    Anyone else have low neutrophil counts 2 1/2 years out from chemo? My counts were slowly creeping back up to around 3 in Sept. I had my annual physical with my primary today and I was back down to 1.2 Overall WBC was at 2.5. I feel fine but it is still frustrating. He made me go over to my MO to drop off the results. It could be worse. I don't think he will do anything but monitor at this point but not so good going into cold and flu season. Anyone else have low counts? Just wondering if it's normal or if I should be thinking about something else going on.

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  • runor
    runor Member Posts: 1,798
    edited December 2019

    Since 2017 two Christmases have been bombed by the whole cancer thing. It is so hard, the pressure this time of year to NOT feel msierable, when you have every solid reason in the world to feel miserable, is true torture. I am so sorry for people facing bad or uncertain news this time of year. It's excruciating. 

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  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited December 2019

    Legomaster225- my neutrophil count as off 11/6/19 is 4.8K/UL. It seems to hover around that area.

    The part of my blood work that was SLOWLY increasing over the last 6 months is my ALP. It’s just a few points over the acceptable high end range. The rest of my blood tests are within range. I wasn’t having tumor markers measured but that will start now

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  • Legomaster225
    Legomaster225 Member Posts: 672
    edited December 2019

    Thanks DodgerGirl. Glad your counts are ok. My ALP has been fluctuating a few each test Still in the normal rage presently though. Definitely keeping an eye on it. I wonder if the Aromasin/Armidex has something yo do with it? My MI doesn't do tumor markers. I wish he would. I'm curious about them

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  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited December 2019

    Annbee— hope the holiday show went well tonight

    Legomaster225– how often do they test your blood? Hope your WBC and neutrophils start behaving

    Scrafgal— I think age is slowing down my holiday decorating overall. My Christmas tree is due to pain. I LOVE Christmas and have enough ornaments for 3 from full size trees. Used to put up 2 full size trees every year but aging has moved me from 2 full sized trees to 1 full sized tree to 1 5’ tree. Discovered that a 5’ tree on a table looked fine out the window plus I had lots of space for gifts under the table AND decorations on the table under the tree. So that is where I am now, 1 5’ tree still sans ornaments

    Runor—. The holidays are difficult when bad things are happening. I suppose we all experience that as we age. But I still can escape in my mind while looking at my tree all lit up while Christmas music plays in the background. Not so sure I could feel that same joy at a Christmas party though where others seem to be going through life without a worry.

    Tomorrow is a restaging PET scan. I am worried about what they will find.

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  • Scrafgal
    Scrafgal Member Posts: 631
    edited December 2019

    DodgersGirl

    Right now, I am staring at my 5' tree glistening with angels in my bedroom. When my sister arrives, I will put up the big 12' tree in the livingroom, and we will decorate that one! Both are artificial and easy...but I can easily see myself going down to one tree eventually. It was my mother's dream that one day, one of her children would have a house that could hold two trees--with one being an total angel ornament tree. So, I sort of do it to honor her dream! Now, if I can just muster up the energy to go get the other tree from storage in the garage!

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  • Legomaster225
    Legomaster225 Member Posts: 672
    edited December 2019

    DodgersGirl, hoping for the best possible outcome for your scan

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  • Annbee
    Annbee Member Posts: 208
    edited December 2019

    Dodgergirl- the show was so sweet. I have been thinking of you today and hoping for positive news.

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  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited December 2019

    PET scan over. Now the waiting game as I wait for results. Frustrated this morning as the instructions were nothing by mouth after midnight, not even my morning pills, which includes pain meds. When I arrived at the clinic, I was told I could have taken all my meds including pain meds except diabetic meds (which I have none of). So the 20 min scan could have felt better with an ibuprofen. I made a note of this for next time.

    Tomorrow morning it appointment with RO. My original RO retired so hope I like the new one. I am anxious to learn what his specific plan for me is. But not sure how being back in the rads room will be. Rads were the hardest for me 2 years ago. Hoping there’s no PTSD.

    Still no word on approval for Ibrance yet.

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  • Scrafgal
    Scrafgal Member Posts: 631
    edited December 2019

    DodgersGirl

    Glad the PET is over and hope the new RO is one that you are comfortable with trusting. I keep reading about all of the advancements in radiation treatments for BC these days. So, hopefully you will be able to take advantage of these innovations.

    Keep us posted.

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  • Scottie719
    Scottie719 Member Posts: 34
    edited December 2019

    DodgersGirl - I'm a fellow Christmastime 2016 [self] DX, although it wasn't "official" until 1.6.17 - so I'm part of the sisterhood from those days, and am at a complete loss for words to express what we're all feeling for you. Although I'm not a frequent poster, I've checked the boards daily for almost three years now, and one of the threads I follow is this one. It grounds me. I know I'm not alone in appreciating your starting this topic - it helps me remain connected to the only people who truly get what this whole experience has been [and continues to be], and I wanted to add my voice to all the others who are feeling your news in our guts, and are anxiously awaiting your updates. Peace.

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  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited December 2019

    Scottie719– thank you so much. What you described is what I wanted from a group thread. A place where we experienced a common event and can continue to share all the happens as we understand what being diagnosed is like

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  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited December 2019

    update from RO’s visit today: I went thru the simulation like rads back in 2017. They were even able to use the tattoos from 2017 and did not need any additional tats. RO said he will shoot at T5 thru T9. That should KILL the cancer there. RO believes I will feel pain relief after 1 or 2 treatments as the rads will make the area slightly smaller right away and no longer pinch the nerves.

    I will be scheduled for 10 sessions to start the week after Christmas. Will be on my back. Won’t have to change clothes to get it done.

    Side I could feel more pain at first if I have a tumor flair from dying cancer.

    Possible SE are heartburn making it unpleasant to swallow (that’s one way to not gain weight over the holidays) and chest discomfort, skin irritations, etc.

    I have been reading the Ibrance thread here. I recommend anyone here who is hormone positive and worried about progression to look over that thread. There are ladies there on Ibrance for over 3 years and still NEAD.

    Gives me hope that between Ibrance (if my insurance will approve) and rads, my end is farther out that I thought. Fingers crossed!!!

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  • Scrafgal
    Scrafgal Member Posts: 631
    edited December 2019

    Yes, DodgersGirl, fingers and toes crossed with a prayer on top for all things going well with insurance approval and treatment!

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