September 2014 Surgery Sisters

linda505

Thinking of Smitty today and hoping the surgery goes great and she has a speedy recovery.

Noonrider - so sorry that you are having such a hard time with pain - hope that is getting better.

Sjacobs - glad your surgery went well and that you are feeling pretty good - get some rest and heal.

Ilovecoasters - sorry that the pathology report wasn't what you had hoped for!! But don't fret - meet with the MO and get your plan it will make you feel somewhat better to know what the plan is.   The good news is that you have gotten it out of your body and you had clean margins.  And I always think that cancer that got found and "caught" in the nodes means that your lymph system was doing its job and trapping the cancer.   

Feeling pretty good today - a bit tired but not as much as I thought I would be and very little soreness.  

Getting my pink bus supplies ready for tomorrow for Lovecat3: dillon22222 and Su-CQ

Thinking positive thoughts for all my September sisters.

Flannery

Hey noonrider,

So sorry to read of your rough/painful post-op period. Best wishes that time and meds will dial everything down. My guess is that your PS will not proceed with fills until you are significantly more comfortable.

It sounds as though we had surgery around the same time (mine was 9-12) and mine has not been anywhere near as bad as yours. I would have been off pain meds by Day 3 post-op except for the fact that the mastectomy vest they put me in after surgery was horrid and rubbed me raw, necessitating several days of mind-scrambling opioids because Tylenol does nothing for me. Once I found an alternative garment to wear everything improved quickly and I have been off all pain meds for at least 3 or 4 days. Things are uncomfortable/tender/tight but definitely bearable. Still, I had UMX and I'm sure it makes a huge difference to have one good arm. One drain out, one to go. My TE was filled with air at surgery and, if anything, is larger than my opposite C-cup breast. My PS will begin exchanging that air for saline at my appointment next week. I mention this because I haven't seen many references to this approach on the Boards.

Regarding the nipple, I also had nipple-sparing surgery and my nipple definitely underwent some superficial necrosis after surgery - the center/tip went darkish, then blue/black, crusted over, and eventually sloughed. This was obviously beginning on Day 1 post-op, so my PS put me on topical nitroglycerine ointment, which improves local bloodflow and helps the nipple to survive while it learns to rely on different blood vessels. If this seems to be what's going on with you, it might be worth asking your PS about it sooner rather than later to minimize rise of losing the nipple.

By the way, I am also in MN and live in Saint Paul. I am back to driving and will be off work for at least another week or so - if you ever feel like grabbing a coffee with someone living the same sucky experience, feel free to PM me. The thing I hated most in the week or so after surgery was feeling trapped in my house, which was becoming ever-more untidy, with my 4 Border Collies, who were becoming ever-more unruly due to inadequate exercise! My husband is a supportive saint but ended up having some work crises that kept him away from home for a good part of that period.

Sending positive energy and well-wishes to all the rest of my September Surgery peeps!

Peanut323

Hi guys, 

I think the header post has my date wrong - I actually had BMX on 9/19. So I missed my bus! LOL

Anyway, surgery took longer than expected but not for any negative reason. I was knocked out so thoroughly that I didn't even wake up in the recovery room. I was in the hospital room and my bf was already there when I woke up!  I was there for about 24 hours then came home. Only issue is the extent of bruising which will hopefully heal itself. BS said we'll be watching for necrosis but thankfully I delayed reconstruction so don't have to worry about impact to TEs. I'm drinking herbal teas with raw honey to give my skin a little boost. My drains are still the same as far as volume, but color good. BS said she'll probably be more conservative with my drains due to the bruising. I have been more achy and sore than in pain. But, the pain I did have at first after coming home was intense. It turned out to be from the surgical bra. We took that off and the pain has been very manageable since then. The post-mastectomy cami is fine but I have to unzip it sometimes when I have pain pangs. The only complaint I have is with armholes but I have just draped gym socks in the armholes - very sexy!!! 

Overall, despite the discomfort, I feel a lot better than I did BEFORE surgery. I was filled with anxiety, fear, etc. before surgery. Now, I feel relief, peace, and unexpectedly feel a lot more love for my body when I look in the mirror than I did before. 

I hope that gives a tiny flicker of peace to those heading into their first surgery. 

Flannery

Lovely post, Peanut323 - I for one would have found it reassuring prior to surgery! :~)

Best wishes to you for continued good healing.

MarieJune

Hi Ladies. 

I'm logging on quickly to  wish smitty a good surgery outcome! I'm sure she's already in recovery right now, but feel it's important to wish her a speedy recovery. MY ADVICE: Enjoy the pain pump while in there, and DON'T be afraid to use it! I kept not pressing my button and was in agony! The nurses were amazing, doctors great! 

I'm home now, and realize I didn't expect to be in THIS much pain upon standing!! Ouch! I got 60cc's in each expander, I'm super flat! But glad she didn't put more, because my whole upper body is in agony! I have 2 drains on each side, along with two "On-Q" drain-like small things going into my chest to help send out added pain relief! It's GONE!! The liquid stuff to help numb the area is gone, and I'm left with holding these 2 zipped bags that I call my "bowling balls" because I have to drape them each like a purse on my shoulders and pray they don't fall down or bump me again!! Talk about pain!!! 

I'm in agony when I stand up!! Have a slight fever of 100.0 after tylenol but also received the flu & pneumonia vaccines, 4 bags of "vanco" for antibiotics so I'm thinking it's just from the trauma....please pray my fever doesn't go to 101!! Or I'll have to go back into the hospital. it could mean I'm rejecting the TE's thanks to my lupus....I pray it's just a fluke thing! 

I expected my incisions to be ACROSS from my nipples to armpits, but my surgeon made the incisions going across (UNDER) the crease of my breasts! so overjoyed by this!

I'm resting in a semi reclined position, and there's pain (I'm on 5mg Valium which I cut in half) and 5 mg oxycodone every 4 hours. Not giving me much pain relief when I stand up! I get shaky legs and the room gets dark and I go pale! I'm SOOOOO thirsty and had 4 IV bags in the hospital, which I'm told being this thirsty is from General anesthesia. 

I also received a nerve bock in my chest area (just like the paravertebral block but in between my chest rib bones. More pain on the right, than left...which my left one was with all the issues! Lol. Guess "righty" needed to justify all the pain "lefty" had endured! Lol. 

I'm trying hard to get through today and not agonize too much. I took a small walk to get myself up & out. My fever is down to 99.5, as i have taken TWO HOURS just to finish this post since my kids are so happy to see me lol. 

Lots of output with CLOTS in my drains? Is this normal? Huge clots coming out, going only halfway down, and then sucking back up even though my drains are nice and flat (the part that collects the blood). 

Best wishes to Lovecat, Su-CQ, & Dillon tomorrow!!! ((((Huge hugs)))) & ~*~*Rapid Recovery Dust~*~*

enlm20Erica

noonrider, wow it seems like it would be the other way around, hopefully with time it will look better. I'm glad you got this part behind you tho, I have 5 days til my surgery and it's really doing a number on me. Congrats to u and swift recoveries!

Dlove72, that's wonderful! If they can save mine i hope to get those type of results! 

Everforward, that's great news! Sparing the nips and clear margins! The worst is behind you, I'm so ready to say those words lol!

Congrats to all you strong ladies who have gotten through your surgeries and are on the road to recovery..and for us brave ladies who's day has yet to come, we look at your strength and it gives us hope that we will go through surgery just fine. Thanks guys!

Mulligan

MarieJ clots are normal mine were both chunks and long stringy like that were caught in the pump and tubing, they were both cool and disgusting to look at. Hehe 

I hope everyone is doing better. I reiterate what MarieJ says, PRESS on that pain pump when you are in the hospital. The nurse told me to keep pressing it even if I didn't feel like I needed it because it give a  gradual set amount each time and by the time you finally do need it, it won't be strong enough for your pain so don't be afraid to press the button.

Thanks everyone for the well wishes. I found out that I'm negative for the Brca but positive of unknown variant to an APC and ATM gene. Yippee /sarcasm. Is it weird that I'm sorta relieved I don't carry the BRCA gene yet frustrated that there's no known reason why I got cancer?

On a fast crazy train note, I found out yesterday they want me to start chemo next Fri. I was hoping to wait til after my birthday in Oct but Dr says no I've already waited too long. On a even sadder note, it's not only bad that my birthday falls on stupid Pink month, my annuals mammos use to fall on the same month, but now with chemo, I tracked the date and my hair will all fall out around my birthday. Oh joy.

I just found out they moved my port surgery from next Thurs to next Wed. Besides asking not to have it close to my bra line is there anything I can be prepared for or ask for?

Thanks for listening to my mini rant.

noonrider

Flannery, thanks for your reply. 
I'm so pissed about everything right now. I am NOT recovering well. I am the one who ALWAYS bounces back. Instead I'm coming to the two week mark (surgery was 9/12) and I am no better than I was about 4 or 5 days home. I have lost range of motion and am loosing the ability to stretch that out thanks to the cording already going on. 
I went back to the PS today. Here is what she thinks:

1) the breast surgeon who did the mastectomy wasn't able to leave enough tissue on the sides to cover the expanders so they used alloderm. It could be I'm having a reaction to that because there is still more swelling than they would like to see. (My drains are  nowhere near ready to come out at 2 weeks!)

2) Sometimes it doesn't work to save the nipples. The one on the cancer side looks great, but they went in through the old incision and not around the nipple like they usually do.  The other she said looks fine in the surface (parts are blackish but she said this is ok there is pink tissue underneath) but there is a lot of edema behind it. They have to leave more tissue than they like to save the nipples. It could be that next week she decides the nipples need to go. (because if one is gone I want them both gone.)

3) I have, in her words, "extremely well developed pectoral muscles" and it was tough to get the tissue expanders behind them. During surgery she was only able to put about 1/2 of what she normally fills that first time. It could be my pec muscles are still just really not happy about being messed with and will need more time.

4) I just finished chemo, and although my last treatment was two months ago it takes a lot out of your body and makes healing go differently than expected. I'm sure many/most of you have experience with this.  Still…she is not happy with how crappy I'm still doing. I'm mad because I know I should be doing better and there isn't a damn thing I can do about it. 

Smitty333

Thanks for the kind words ladies. At the hospital laying in bed right now. Just wanted to let any ladies getting ready for surgery know that the shots in the back to help numb the chest did not do anything except numb my arms and hands! Would not do them again. Pain is more than I anticipated but the pain pump makes it manigebel. I am not sure if I will go home tomorrow or not. Sending prayers to the girls having surgery soon.

Mulligan

Noon rider, I too had alloderm put in and I ended up keeping 2 out of 4 of my drains for 3 weeks(even then they were still draining a lot but he said the longer they are in the higher risk of infection so they got pulled) I didn't have a choice to keep my nipple as the cancer was too close to it and they removed my nipple on my prophylactic side just so that everything would look the same on both sides. The PS even cut the scars the same to maintain the similar look. So my "good" breast has a bigger scar than necessary which bums me out. I'm sorry you are having a rough time. I swear after the drains were all out things were just a little bit less painful, I hope it also becomes less painful for you too. ((Hugs))

Smitty (((hugs))) and hope you recover quickly.

EverForward

Mulligan, I'm curious how it went when they removed your drains even though it hadn't decreased. I'm more than 2 weeks post surgery; they removed 2 tubes after 1 week but the remaining 2 tubes are still filling up too much. When they removed your drains did you have any problems?

Lilith08

9/25--today is a busy day!
Best wishes and prayers for the DIEP Sisters, lovecat3 and dillon22222, and for Su-CQ51's LX.
Right behind them tomorrow is Muzakmom1.

Be well, Ladies!

jbdayton

I have been out of pocket for the past few days.  

Prayers for lovecat, Dillon, and Su-ZQ for your procedures today.  

Prayers tomorrow for Muzakmom.

I am leaving town this afternoon for a few days again, so will have no internet.  Will try to catch up if near a library or hospital and can grab wi-fi for a short time.  Otherwise will catch up Saturday night when I get back home.

Hugs to everyone recovering.  

enlm20Erica

My prayers are with Lovecat3 dillon22222 and Su-CQ51 as they go in to have their surgeries today, no complications and smooth recoveries!

Mischief46

positive thoughts and prayers for dillion2222, Su-CQ51 and Lovecat3 for non eventful surgeries and speedy recoveries.

Noonrider,  ugh, I really hate to hear how your recovery is going.  I hope you can get those other drains out soon.  I am a fitness instructor and personal trainer, my PS told me before surgery I may have some issues with extra tightness from the expanders.  Uh, that was an understatement.  I never really got over the tightness altogether, I still have it and I have moved on to the squishy side already!  But I did eventually get where I didn't feel the TEs around the clock.   Wishing you some relief soon!

Ilovecoasters

Checking in. I just got home from the plastic surgeon. Hearing good news just felt so good. Drains are out! Such a relief. Unpleasant  coming out but I feel so much better! I also had another 50 cc's filled. I'm at 250 now. I may need a training bra soon,  lol. I won't go back for two weeks now. A little bummed about it but I know this isn't something to rush.  Feeling so fortunate with my healing since I am only 6 days out  

I

MarieJune

update: pain meds aren't helping at all, not able to move my skinny body any which way without help, severe pain, fever consistent of 101.1 since yesterday afternoon (tylenol won't bring it down), 

Visiting nurse coming later today- hoping she will help me out. I never ever expected to be an absolute vegetable!!! 2/4 drains (one on each side) puts out lots of blood w/ clots and fills up, but the other 2 are always low output w/ clearish/blood streaked fluid so that's my good news. 

When I stand up (my niece has to lift me from my back) I lose my breath & instantly shake due to overwhelming pain. Sharp/stabbing take my breath away pain! But in semi reclined position, I'm much more able to relax and breathe short rapid breaths. 

Did anyone have feelings and pain like this after bmx? I also got the pneumonia vaccine before leaving, have a huge lump on my arm like a softball cut in half. 2 days out and I am trying to keep positive, but this is the worst pain of my life. What to do? :~/

noonrider

MarieJune, I was in a lot of pain. I didn't come home from the hospital until day 2, but had to be able to get myself out of bed and to the bathroom and back to get out. Try to make yourself use your arms as much as possible. Reaching for things a little further than you did the hour before, etc. 

That said, i am still having pain issues at the 2 week mark. Not that severe anymore, but definitely some problems. I wish I could understand why some people seem to sail through and others clearly do not. Hang in there. Two days out is practically just waking up from surgery. 

Ilovecoasters

marieJune,

I was exactly where you were until late day 3.  Fever, projectile vomiting, and at one point the pain was so severe I thought I was dying  it will get better. For me, going off the pain meds quickly helped.  I was not able to process the pain or my feelings with Percocet in my system.  The muscle relaxer seems to help more.  Hang in there.  Trust me. You are not alone and we are all here.  What kind out output do you have with your drains, ccs? 

MarieJune

thank you both for your help and advice. The pain meds don't even touch the pain! I called Breast surgeon to see what can be done. I'm consistently putting out 145 ml in a day in drain R#2 & 115ml in drain L#1 (that was yesterday) today I put out a full cup 100 ml of fluid from drain R#1 which was a LOT!! the other drains were blocked up with hard clots that I had to break up to push them down into the bulb, 

I'm VERY swelled, my drains come from below (had an incision below where my breast was). I haven't opened up my binder at all where incisions are (even though they have tegaderm clear film covering them), except to fix binder because it was crooked and the Velcro was covering part of my very painful right side.

Hoping the dr says I can take 2 pain pills (oxycodone 5mg) rather than one, because I'm getting NO relief. I'm taking tylenol (despite the liver pain & stomach pain it causes) to lower my fever, but it is remaining steady at 101.1. Doesn't go down.

I've been trying to move, but I feel like someone is literally squashing my chest and I lose my breath each time I have to pee. I took a walk in my complex yesterday, but had to sit down (we took a camping chair) and went pale because of the way I can't breathe when standing up. I shake, shiver, and pant like a dog upon going from sitting to standing.

I knew I wasn't ready to go home, but my roommate was coughing and sick & she refused to leave (psychiatric patient- what joy!! Ugh) so they wanted me out ASAP. Nurse is coming later & will assess me. I can't even scoot up when I slide down! Can move my legs, but when I try to reach, move, do anything with my arms/use muscles in chest, I just about faint! I have systemic lupus & pray I'm not rejecting the expanders!

I pray for those who are also having a tough recovery! My heart & prayers are with you!

To those in surgery today: best wishes! I pray all went well and you heal quickly. Lots of love to the 3 in for surgery today! Here I am complaining, when two lovely ladies are getting DIEP surgery?! Makes me feel bad for venting. Prayers to all 3 of you!!

Best wishes tomorrow, for your own surgery Muzakmom1. My prayers are with you. 

God bless all of those who have already had surgery, and those about to go in this next week. (((((Huge hugs)))))

Ilovecoasters

MarieJune 

When are your post op appts? Both my doctor and the home nurse told me the fever, as long as below 101.5 is ok.  Are you using the breathing thingy? To make you take deep breaths? I'm sorry you are having difficulty. Did they give you a muscle relaxer?  It helped the muscle strain in my back and legs.  

Mischief46

MarieJ, I  also had a fever for a few days after surgery that wouldn't go down but by day 4 it was gone..I hope you will be able to say the same.  I bet your Dr will have no problem with you taking 2 painkillers..mine said one or two...whichever helps.  But of course check with the doc first.  You have a LOT of output from your drains..it doesn't sound like you are moving around too much since you feel so bad when you, do but please just stay put and only get up when necessary.  My PS and BS said not to move my arms much at all until the drains come out. No reaching.  There is a lot going on in there..let your body heal by drinking lots of fluids and resting.  Praying you get some relief from the pain...hang in there.

Mulligan

Everforward after all my drains were pulled I did notice I was a bit swollen but my body eventually absorbed the fluids and I was fine. My PS also made me take 2 different antibotics for 4 weeks. Now that was difficult for me as it caused such bloating and constipation.

MarieJ, I'm sorry you are having a rough time. I actually ended up staying in the hospital for 3 days as they could not bring down my blood pressure (I usually run low too). The first day after surgery I felt like I was hit by a truck. I couldn't move and once they got the pain managed I was able to then at least sit up. Could you possibly get a stronger prescription for your pain? Mine sent me home with a pain pump of lidocaine directly into my chest for the first week and I was prescribed both Dilaudid and Oxy to take together. Take care and rest!!!! I'll be thinking of you and praying for you to heal quickly.

MarieJune

thank you all so much for letting me know what you went through. It's so helpful and makes me have hope. 

I called BS, and he said definitely take 2 of my 5mg ocycodone...and i only got 12 Valium, so I cut them in half (they are 5mg) to make them last longer. I just did my drains again and realized both sides of my binder are soaked!!! I have clearish fluid on left side with red dried & wet blood on right side where drains are. Looking forward to my visiting nurse to come & change my binder to the extra one they gave me! 

Was told my right nipple had discoloration after surgery, so she'll check on that too. 

Mischief46

MarieJ,  can you not get anymore valiums?  You might have to ask the PS but I can't imagine them not giving you more.  You might want more for expansion anyway. I could never tell much difference with  a full dose so I can't believe you are getting to much benefit from half.   Both of my nipples turned black after surgery.  I asked my BS if I was losing righty( it appeared much worse) but she said to hang tight that it was common for them to go through some changes in appearance after surgery.  After about 3 weeks they looked better and one day what appeared to be scabs, fell off and they were normal again.  Thank goodness...now if they just weren't always erect I would be glad I saved them...

Did the nurse say anything about the amount of drainage you are having?  It is probably normal but it just seems like a lot..

Lilith08

MarieJune, you are one tough lady! Lots of support here for you. Glad you have your niece helping, and I hope the nurse will make things a lot better.

Sjacobs146

MarieJune, I'm so sorry to hear that you are having such difficulties!  I will keep you in my prayers, wish I could do more.

Dlove72

mariejune- will pray for you as well! Hope you get better!!

Ladies- how long til they say we can start driving after surgery? 

Mischief46

my BS said I could technically drive after my drains were removed but I didn't really have the range of motion to do so for another few days.  It was about 2 1/2 weeks after surgery.

noonrider

MariJune, you can also ask your PS about alternating your 2 Ocycodone with something else. (usually alternating a tylenol based product with a non-tylenol product) so you're taking something every two hours during these first really rough days. I'm two weeks out and still taking one Oxy every 5 or so hours. You can't heal when you're in a lot of pain, or work on range of motion or anything so your doctor will really want you to be as comfortable as he/she can get you. Hang in there! I don't even know how your posting! I was on so many drugs I couldn't even read my computer much less type anything!