Anyone want to sit and wait with me?

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  • ksusan
    ksusan Member Posts: 4,505
    edited August 2018

    By all means, whine. If you find you're sinking deeper into the feeling, you might want to take a walk around our beautiful facility while breathing deeply and just being in the moment, whatever that moment is.

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  • ksusan
    ksusan Member Posts: 4,505
    edited August 2018

    I am literally waiting at this instant--radioactive injection done earlier today; bone scan in 40 minutes.

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  • MiCyn
    MiCyn Member Posts: 73
    edited August 2018

    Oh no Colleen ..I'm just coming off steroids, had #2 chemo Tues. Your post is making me cry ! I was so upbeat on Tues,Wed..Today is a totally different story. SO so irritable, like severe PMS. I've been avoiding my DH all day. I'm afraid of what I might do or say. I'm normally a very patient, calm person. Not today. I will be joining you in the waiting room for HUGS, STRONG drink, and YES your crying partner! Maybe we can go bug the cabana boys, and get a good laugh out of it. Have my stiff margarita ready! Big Hugs girl! Cyn 😙

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  • ColleenS80
    ColleenS80 Member Posts: 271
    edited August 2018

    Ksusan, thanks. Fingers crossed and hoping and praying for good news from the bone scan!! ❤️

    Cyn, thanks andI’m sorry you’re feeing like this today too. :( Thankful we have this virtual room to commiserate in. Big hugs back and here’s your margarita! Cheers! ❤️

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  • oxygen18
    oxygen18 Member Posts: 164
    edited August 2018

    Colleen,

    So sorry youre feeling mopey, but yes, absolutely, this is home too, let it out, we are here to share any/all aspects of the so called journey, and various drinks too :)

    I'm sending hugs to you and to your family

    image

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  • oxygen18
    oxygen18 Member Posts: 164
    edited August 2018

    ksusan, I'm waiting with you, hoping for the best.

    micyn, I'm thinking of you.

    Sending hugs and hope to everyone who finds herself here.


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  • Amica
    Amica Member Posts: 488
    edited August 2018

    Huge Hugs Colleen.

    I think the Zoladex is going to mess with your emotions since it is messing with your hormones.

    Fear of recurrence is natural. However from what you have posted your treatment team is doing everything right, and you are getting excellent medical care, and statistically you have a good prognosis for many decades of No Evidence of Disease (personally I don't use the term cure.)

    And I can tell you that even a recurrence is not the end of the world. There are effective medications now that will prolong survival, and every year there are advances in breast cancer research.

    I think a Breast Cancer diagnosis is always going to hit you hard, there is so much unpleasant stuff to go through and deal with, and there are going to be the tearful sad days. Be good to yourself, realize that your own body is on your side and is fighting for you. You are strong and beautiful, and let yourself cry.

    Amica


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  • ksusan
    ksusan Member Posts: 4,505
    edited August 2018

    Thank you. The scan will have been read by now, but it will go to my oncologist, who doesn't work Fridays. They think the results will show in my portal in about three working days. The technician did the scan, then told me that I had enough of the radioactive dye still in my arm that it was interfering with the reading on my chest. He had me put my arms over my head and did another scan. I will attempt to work on the assumption that this was an accurate statement. The alternative, of course, is that he saw something and needed to image it a second time. So this freaks me out a little bit, but I am going to work hard to assume that all is well and not borrow trouble.

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  • Amica
    Amica Member Posts: 488
    edited August 2018

    Ksusan

    My hopes are with you for a clear scan !

    You know I had a good brief cry today too. Maybe today is Cry Day in the Waiting Room, we can all cry as much as we want to, and create big snotty messes, and then stop, breathe, and then cry again if we feel like it! :) Crying helps heal.

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  • ColleenS80
    ColleenS80 Member Posts: 271
    edited August 2018

    Ladies, thank you so much for your love and support. Amica I so appreciate the encouragement. It’s easier to cry with a friend!

    Ksusan you sound like me, I can see myself automatically assuming trouble in that situation as well. But, our minds go crazy places. I’m sure he was being honest!! Please keep us updated when you get your results. ❤️


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  • ksusan
    ksusan Member Posts: 4,505
    edited August 2018

    Will do. I'm pretty good at not catastrophizing, but I've been lied to/misrepresented to by some medical folks in this process so my alert is a bit heightened, and the injection was quite painful (I'm still alternating icing and compression garments this evening), so I wasn't at my best this afternoon.

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  • Amica
    Amica Member Posts: 488
    edited August 2018

    ksusan

    I have been sore from the CT scan injection, and the bone scan injection, my whole body, including the next day. They never tell you this will happen! the buggers

    I don't think the tech would mislead you about the arm positioning. That would be 100 % unethical. It makes sense that your arm was obscuring the view.

    Drink lots of water! flush that stuff out!


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  • ksusan
    ksusan Member Posts: 4,505
    edited August 2018

    I'm at ~130 oz and counting today, so I think I'm good! So sorry to hear that you've had pain from imaging injections.

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  • InnaB2018
    InnaB2018 Member Posts: 1,276
    edited August 2018

    ksusan, Coleen, cry and rant away as much as you want. There is no one in the world who will understand you better than we do. I also have weepy days, especially the week after the infusion. With Taxol, I am thinking I am going to die from the side effects and will never know whether the treatment worked.

    Coleen, it looks like you are done with your treatment, so you can subscribe to a livestrong program at your local YMCA. I am going to do it too once I am done. It’s an exercise/support program for cancer survivors. My friend did it and she swears by it. She said it helped her to overcome the depression and weakness she had after the treatments.

    Ksusan, I pray for a clean bone scan. From another thread I know you exercise like a madwoman and eat right, so all I can offer to you is positive vibes and a shoulder to cry on when needed.

    Stay strong, ladies

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  • InnaB2018
    InnaB2018 Member Posts: 1,276
    edited August 2018

    Here’s my favorite cabana boy. Shirtless this time.

    image

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  • hapa
    hapa Member Posts: 920
    edited August 2018

    Hi Colleen - I had surgery two days ago and they found residual cancer. This was after my onc told me he expected an excellent response to chemo, so quite disappointing. I looked at some calculators online and it doesn't look good. So I'm right there with you thinking its just a matter of time, and maybe not even a lot of time. It seemed too difficult to even consider stage IV up until now, but I think I have to. I'm not sure how I'm going to pick up the pieces of my life and just go back to work like none of this happened. I've got five and a half more weeks to figure that out.

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  • ColleenS80
    ColleenS80 Member Posts: 271
    edited August 2018

    Inna thanks for the suggestion, I will have to look for that program. :)

    hapa, I’m so sorry you’re feeling the same way. As we speak I’m getting ready to post in the “worried about mets or recurrence” bc I had a terrifying thought today. I’ve had a lump in my upper gums for over 6 months-dentist put me on antibiotics and it didn’t go away so they’ve just been watching it. It’s roght above a tooth with a crown so I am PRAYING there’s just an issue with the tooth, but I made the horrible decision to dr google and breast cancer can indeed met to the mouth/jaw/gums. Now I’m terrified there’s a tumor in my mouth. Oh I hope I’m wrong. :(

    And I agree, I’m not sure how to go back to work in October and feel “normal.” I desperately want to but I don’t know how.

    I’m so sorry you still had residual cancer. That’s a kick in the gut. I have talked to many women who’ve been in this situation with us and been many many years out-I hope that encourages you. It did me. I just have to keep remembering that no one is the same.

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  • ksusan
    ksusan Member Posts: 4,505
    edited August 2018

    Did your dentist do an x-ray? Sucks to have these thoughts occur :(

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  • oxygen18
    oxygen18 Member Posts: 164
    edited August 2018

    hapa,
    About a month ago I posted this, hope it gives you some reassurance:
    "Our study suggested that the HER2-positive HR-positive patients had a good prognosis despite the lower achievement rate of pCR, whose prognostic impact was smaller than that in the HER2-positive HR-negative patients"

    From: Pathologic complete response after neoadjuvant chemotherapy in HER2-overexpressing breast cancer according to hormonal receptor status
    Tanioka, Minami, 2014

    Colleen,
    That would be an unusual metastasis site, I hope you allow yourself to let go of that worry and just have that spot checked out for peace of mind. Of course these kinds of worries are understandable, I still have them myself, and at times like these I go for happy distractions, friends, family, good books, brisk walk, checking out the fauna around our pool, etc.

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  • ColleenS80
    ColleenS80 Member Posts: 271
    edited August 2018

    ksusan, they did-they said there may be some infection but couldn’t tell for sure. Wanted me to come back after I’d been on the antibiotics a bit bc she said it would be easier to tell? But they didn’t say anything about my cancer...I don’t think any of them had thought about it either. I’m very curious what they will think when I bring it up.

    Oxygen, thank you for the reassurance. ❤️ I’m trying not to ruminate. Also, thanks for resharing that but of info about poor response! Always an encouraging reminder.


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  • Amica
    Amica Member Posts: 488
    edited August 2018

    Colleen

    Hoping the antibiotics help, and it gets resolved!


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  • ColleenS80
    ColleenS80 Member Posts: 271
    edited August 2018

    Thmk you Amica! Hope you are doing ok. :)

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  • hapa
    hapa Member Posts: 920
    edited August 2018

    Colleen, it may just be an abscess that needs to be cut open and drained. Gross, but not uncommon. I had a friend who had that problem, tried antibiotics and nothing worked. It was just a pocket of something above a tooth in her gums. I guess she had a cavity or something in that tooth that wasn't completely removed and it turned into an abscess over a number of years. Theoretically the cancer can show up anywhere but in your gums is pretty uncommon and a dental issue is much more likely.

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  • ColleenS80
    ColleenS80 Member Posts: 271
    edited August 2018

    Thanks hapa! ❤️

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  • edwards750
    edwards750 Member Posts: 3,761
    edited August 2018

    Colleen -I’ve had an abscess tooth several times. It’s painful. I was chasing pain pills with Tylenol. It’s pretty bad when you pray for the shot to give you some relief.

    From what you describe I think it’s a dental issue too.

    Diane

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  • beeline
    beeline Member Posts: 308
    edited August 2018

    I hope you don't mind me joining you here in the waiting room. I've just been for a ct and bone scan this morning. Not sure when I'll get results, but as my supposed stage 1 turned into a 3c post-umx I'm now terrified that what I've assumed is a running/overuse injury in my hip will turn out to be mets. I know so many go through this, but right now I don't understand how! How do you get through the waiting never mind the increasingly bad news?!

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  • JoE777
    JoE777 Member Posts: 628
    edited August 2018

    Beeline, you've done what you can do for now so hang in there for a little longer. Keep us posted. Hugs and peace

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  • InnaB2018
    InnaB2018 Member Posts: 1,276
    edited August 2018

    beeline, think positive. Chances are it really is the injury. Stay strong, don’t let panic control you

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  • ColleenS80
    ColleenS80 Member Posts: 271
    edited August 2018

    Edwards-thank you!!

    Beeline-welcome but I’m so so sorry for your stress! It is the very worst waiting. Prayers that your scans come back clear!

    One thing I’ve been doing when I’m in that stage (where you’ve done all you can do and just have to wait on potentially scary news) is to use my senses to stay in the present moment and try not to ruminate. My therapist suggested this because I have a realllly hard time not “going there” in my mind. I have a stress ball, and I bought some kinetic sand (yes from the toy store haha) that I play with to stay centered. You can also get favorite smells and keep them on hand to sniff. I’ve also started using a meditation app. Journaling out all your fears and allowing yourself to go there within a small time frame each day can also help-that way, if you start to freak out at others times of the day, you can try to mentally cut off that switch and say, “No, it’s not not 9:30 yet, I can think about this then, but now is not the time.”

    I know this is all easier said than done, and I am still working at it and failing at it every day, but these things really have been helpful for me when I can employ them. I hope they help you as well! Please let us know what you find out! <3


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  • beeline
    beeline Member Posts: 308
    edited August 2018

    Thanks so much JoE, Inna and Colleen. I can seem to hold down the panic for a while but then it rears its ugly head again. Colleen, I really like the idea of setting aside a freak out time of day -- not sure how well I'll do sticking to it, but I can try!

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