May 2016 Surgeries

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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited May 2016

    Sending hugs to all having surgery this week, let us know how you are when you can.

    My last hospital stay I took my Ipad and phone, no worries it was right by me.

    To all my recovering friends, best to you and you are in our thoughts

    Twirp26 did they see your nodes on a scan earlier? Why can't they get to them? If you don't mind my asking?

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  • WenchLori
    WenchLori Member Posts: 1,558
    edited May 2016

    Sending hugs and well wishes to all having procedures this week. I will keep you all in my prayers!

    I hope that those who are recovering are finding their pain a little easier to handle with each passing day!

    Gentle air hugs to all!

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  • HuskerFan
    HuskerFan Member Posts: 85
    edited May 2016

    Sending hugs and well wishes to everyone having surgery this week. My nurse called and my surgery has been reschedule to May 26 (from the 24th). I know it's only two extra days, but I really just want this overwith!

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  • raven4mi
    raven4mi Member Posts: 562
    edited May 2016

    I just took a walk around the block. I know that may not sound like much to a lot of people, but it's the first exercise I've had in over four weeks. Of course, now I need a nap but, whatever........yay, exercise!

    In other news, the pin prick holes in Flotsam's tube isn't leaking, so yay for that.

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  • HuskerFan
    HuskerFan Member Posts: 85
    edited May 2016

    @raven4mi, yay for exercise! That's the one thing I'm going to miss early on is going for a walk in the nice spring weather! I'll probably have to settle for sitting outside in the sunshine for a bit.

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  • Papillon1
    Papillon1 Member Posts: 308
    edited May 2016

    midwest - lovely imagery regarding my online name. I live near the mountains so it works :)


    Good luck toystory!

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  • sensitivehrt
    sensitivehrt Member Posts: 359
    edited May 2016

    Positive thoughts and healing vibes for all my sisters having surgery this week. 

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  • GreyKat
    GreyKat Member Posts: 225
    edited May 2016

    The semi-delusional GreyKat writes again. Beware the nitropaste. Beware!

    After a hellish week of constant dizziness, crashing into walls, repeatedly falling on the floor, having everything spinning around me, blurred vision, seeing double, nausea so badly that even sips of water meant vomiting, and them playing medical roulette with drugs to try and control all the side effects, I said to the nurse yesterday that I quit. I quit them all, painkillers and antinausea and everything that just seemed to make it all worse.

    I kept up the nitropaste because black nipples need help and no one told me it did anything but lower my already low blood pressure and in fact they doubled my dosage to try and save them. But noooo... After a couple phone calls today from my concerned PS nurse, the BS told me to quit using it and wipe it all off. Apparently my symptoms are a practical checklist of nitropaste overdosage: dizziness, mental confusion, repeated falls, blurred vision including losing shapes of objects, clumsiness and inability to grab things, excessive sleepiness, everything is spinning around me, it feels like I am also always moving, double vision, nausea, inability to concentrate. I hear words but they make no sense. I type and plunk around and around but the letters come out wrong and it takes forever to hit the right keys.

    I envy you ladies who are a week out and able to go on walks. I can't even read or write without major effort cause the words swim. Oh nitropaste, I hate you, I really do.

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  • raven4mi
    raven4mi Member Posts: 562
    edited May 2016

    GreyKat, I'm glad they've finally figured out what the problem was! Did they say how long it would be before the symptoms would subside once you stopped using the paste?

    And, again, please don't give up on the nipples yet! One of mine came back and I never used any kind of paste, cream, or other special methods. Don't lose hope yet.

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  • WenchLori
    WenchLori Member Posts: 1,558
    edited May 2016

    Wow! My goodness GreyKat! What are they trying to do to you?!?! All the horrid experiences you are having BAD! BAD! BAD! You have made my questions to both my PS and my BS twice as long! (GreyKat) Healing prayers coming your way!

    Huskerfan, what a bummer, to the doctors it's just two days to us it may as well be forever!

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  • raven4mi
    raven4mi Member Posts: 562
    edited May 2016

    Remember when I said my DH forgot to ask about the saline in the expanders after my excision last week? Well, I know for sure that the PS replaced the air with saline because all of a sudden I can hear it sloshing around when I move. So that's...............something.

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  • Angtee15
    Angtee15 Member Posts: 209
    edited May 2016

    Good afternoon ladies!

    Catching up and was able to fire up the laptop and update our list of surgeries. Best wishes for smooth sailing to everyone having surgery this week.

    Greykat--at least you got to the bottom of what has been causing you so many problems! I hope you will be feeling like yourself soon lady. You've been through enough!

    Twirp--Well @#$! I'm sorry you have to go back to the operating room again. Did you get any more information on how your chemo response was?

    Raven--I was convinced if I poked my drain tube catastrophe would ensue and was total spaz about it when my aunt was helping me with them over the weekend. Glad it hasn't caused a problem!

    Aside from expected fatigue, I feel way better than I thought I would at this point. I did get out and take a walk up the street for some coffee on this rare day of good weather in Chicago.(It was worth risking passing out in front of someone's house lol.) I have my post-op appointments tomorrow with the surgeons. I am still producing considerable fluid in the drains so I expect those to stick around for a few more days. Is anyone else experiencing much more swelling on one side than the other? I was told they were able to give me a pretty good fill during surgery so I don't know if one side is deflating or what. The fluid output is the same on both sides and I definitely don't look infected. Hmmm. I guess I will find out tomorrow if something is wrong.

    Lastly, I have no idea why I can't unbold this text.


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  • grandma3X
    grandma3X Member Posts: 759
    edited May 2016

    Heading home after a wonderful holiday weekend to see my niece get married!

    It's so good to catch up with all of you again! I'll post more tomorrow.

    Best wishes to my surgery sisters this week - feeling nxious, but ready to get this over with!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2016

    greykat - ask about Silvadene for the necrosis - it shouldn't cause any side effects.

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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited May 2016

    Angtee I'm 5/24 now. Best to all

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  • GreyKat
    GreyKat Member Posts: 225
    edited May 2016

    Thanks for all the kind words y'all.

    This might be a bit gross but when I threw away the nitro-soaked dressings and gently wiped the rest of the paste off with a damp cloth, both nipples' skin wiped off with it. So then I started bleeding. And leftie is still black around the edges and now raw and bloody on top, like rightie. They did NOT warn me that when I wiped off the paste I could risk peeling off the skin too.

    Called the dr to ask what to do. That was 3 hours ago. Still waiting for a call back. I just stuck clean gauze over them and bound it all up again. Has anyone had this happen, where the nipple skin turned black and just totally peeled off leaving bloody tissue? Did it heal normal or all drop off?

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  • Papillon1
    Papillon1 Member Posts: 308
    edited May 2016

    good luck all!!! It'll soon be all over. Stay strong X X X X

    NattyB - TODAYmyToyStory2 - TODAYSpecialK - May 17th
    monicammoriah - May 17thgrandma3X - May 18thValstim52 - May 18thScared67 - May 20th
    KNardo88 - May 20th.
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  • raven4mi
    raven4mi Member Posts: 562
    edited May 2016

    GreyKat, yes, when mine peeled away it was red and bled a bit and then all healed up quite nicely. You PS office may call in a stronger antibiotic ointment for you, but in the meantime you if you have any OTC triple antibiotic ointment you may want to dab some of that on until you hear back from your PS.

    Edited to add: I wouldn't think an antibiotic ointment would interfere with any possibly left over nitro cream, but you may want to check with the pharmacy. I'm not a medical professional; just speaking from experience.

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  • grandma3X
    grandma3X Member Posts: 759
    edited May 2016
    GreyKat - I sure hope that getting rid of the nitro does the trick!

    I have not caught up on all of the posts yet, but wanted to send my well wishes to last week's surgery group and healing thoughts to NattyB and MyToyStory2! I hope you are recovering well.

    I get back last night from Tenessee, flew into Baltimore and drove the 2 hours home. Will do some grocery shopping this morning and then back to Baltimore for my SN injection this afternoon at Johns Hopkins. We'll stay overnight at a hotel close by since my surgery check in time is 5:30 am on Wed. I found my list from last time I went through this and started pulling things together to take with me. For some reason, that really calmed my nerves. I feel much better today than I did yesterday about the whole thing.

    Sending good surgery mojo to SpecialK and monicammoriah! Valstim - I hope you are enjoying a peaceful day today as we get ready for tomorrow. BTW I have not decided on a good set of drain names yet. Any suggestions? My daughter wanted to name them Megatron and OptimusPrime, which my grandson would probably think was pretty cool, but I'm not sold on these and still thinking about it.
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  • WenchLori
    WenchLori Member Posts: 1,558
    edited May 2016

    Ouch GreyCat!

    I'm thinking that maybe keeping my nipples may not be the way to go? I know we are all different but I'm curious as to how many have lost their nipples after their surgery? Anyone?

    The Bloomington IN hospital has emailed me videos to be watched before my procedure. It was very interesting and very unexpected! Videos included... Understanding your pathology report, stages of BC, mastectomy, reconstruction, hospital stay and several more. Very educational indeed! I asked my DH if he'd like to watch them with me as he's a big science guy? All I got was the deer in the headlights look! He's a manly man and that look told me he's also very emotional about all this. Busted!

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  • GreyKat
    GreyKat Member Posts: 225
    edited May 2016

    @WenchLori - If it makes you feel any better about it, since your entire chest/breast area will be numb, numb, numb, for most of the rest of your life (removing the breast tissue means cutting all the nerves in that area - they better have told you that) I couldn't feel a thing when the skin of both nipples wiped right off and they bled.

    I haven't looked at things today. Post-ops in a couple hours and I just don't feel like my head's on straight. I don't understand because the only thing I'm taking is the antibiotic. I'm not even taking tylenol for the pain, just sucking it up. I had horrible depressing dreams last night and all I really want is to 1) have a clear head, 2) stop hurting, 3) get these painful drains out. I don't even care about fills right now if I could just lose the pain and the brain fog.

    Maybe I should change my name to Depressed Kat. Eight days of this is really bringing me down y'all.

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  • raven4mi
    raven4mi Member Posts: 562
    edited May 2016

    WenchLori, I attempted NSBMX on 4/15. Since then, I went in last week on 5/11 for a nipple excision due to necrosis. HOWEVER, by the time I went in for the excision, the left side had almost completely healed. I'm still completely bandaged up and don't go back for follow-up again until Thursday this week, but I believe the left side was saved (I might have lost the tip of the nipple but I can see that the areola is intact), but the right nipple and areola were lost, and that's the side that had the prior lumpectomy/radiation.

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  • HuskerFan
    HuskerFan Member Posts: 85
    edited May 2016

    WenchLori, I'm thinking the same thing! Is it worth it to try and save the nipples? If i decide again saving them, I know exactly what's going to happen and what the end result will be (I'd probably get 3D tatoos). But if I do nipple sparing, I really have no idea what the outcome will be......I could have one die or both, they may not end up looking like I think they will, etc. I have a fear of the unknown. I like to have all of my ducks in a row and know exactly what's going to happen.

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  • WenchLori
    WenchLori Member Posts: 1,558
    edited May 2016

    Thank you everyone! I was told all feeling would be lost to my breasts so they did do that. I guess I should make my decision and hope for the best but I have a tendency to think the worst 😳

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  • ella23
    ella23 Member Posts: 36
    edited May 2016

    i can't remember if I posted an update since my nsbmx last week because I've been so knocked out in pain meds but I wanted to jump in and say to those who had questions about nipple-sparing mastectomies-- I had a delay done in April and shortly afterwards (about 5 days later), one of my nipples turned completely black. I freaked out and was sure that it was dying, but couldn't go in to see BS because i was out of town. It stayed black for at least another week, but then the black scabs started falling off, exposing pink flesh underneath that was slightly bloody. It took another 2-3 weeks for it to look normal again , though the coloring was a little light. I put antibacterial ointment on them every day

    Moral of the story: black isn't always bad. Good luck to all!

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  • tsoebbin
    tsoebbin Member Posts: 474
    edited May 2016

    Just got the pathology back from my lumpectomy. My original DCIS dx has turned into 2 spots of invasive cancer. One spot is 11mm and the other is 4.5mm and they were not next to each other. Every slide had DCIS on it.

    It is being tested for HER2 status right now and i hope to know more about that today.

    Bilateral mastectomy is in my near future.

    This sucks.

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  • MoreShoes
    MoreShoes Member Posts: 322
    edited May 2016

    Tsoebbin, that really sucks! Hang in there.

    GreyKat, that's really bad luck. It has to become better soon.

    Raven, thank you so much for mentioning the cold thing. Is this something permanent? And no one told me about the numb feeling. I guess I've to be happy to be alive, since all the docs expect to see me again with cancer even after BMX (this is the third time already).

    Angtee, thank you for adding me to the list. You're just out tof the surgery and you have the energy for updating the list...chapeau!

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  • Midwest
    Midwest Member Posts: 34
    edited May 2016

    @tsoebbin, sorry about the results, big hug to you.

    @grandma3x, please keep us posted! glad you had such a nice weekend and that you are feeling more relaxed this time around.

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  • raven4mi
    raven4mi Member Posts: 562
    edited May 2016

    Tsoebbin, so sorry about the pathology. It does suck. Hugs to you.

    MoreShoes, I'm assuming the cold thing is permanent since there's no layer of fat for insulation anymore. As for the loss of sensation, yes, I was prepared for that, but not because anyone had told me it would be that way, but because I Googled it before my procedure.

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  • georgiaredskin
    georgiaredskin Member Posts: 214
    edited May 2016

    Good luck to everyone having surgery today or the rest of this week and hope everyone who had it is healing well!

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