September 2014 Surgery Sisters

sandra4611

MarieJ, you are worrying me to death. That fever is not normal and the amount of pain you are in is way over the top, especially after the first three days. The drains are pouring out way too much. Something is going on in there, girl. Seriously, if I were you, I'd have someone take me to the hospital ER. Enough of this crap. You are in such a depleted state that there is no way you can fight off an infection and begin to heal. I've been on this website for more than a year and have read a thousand reports. Yours raises red flags.

One of my other friends, Moonflower, had the issue with draining like that. Turns out one of her lymph nodes had been cut. They went back in and fixed it and all was well.

I have no faith in visiting nurses after four long recoveries. Some were ok, most were terrible. One even said she didn't need to wear gloves when changing my PICC line dressing. Another yanked on the PICC so hard that one of the sutures tore out. Another couldn't figure out how to draw a blood sample and still another told me my PICC was blocked and couldn't be flushed. (It wasn't.) I don't care if their badge says they are an RN or LVN...the care you received is often sub-par and even worse than none at all.  

A fever over 100.5 is BAD. Go get some help.

MarieJune

Mischief, visiting nurse came & told me my left lung sounds "yucky" and isn't sounding like normal flow...so she is having me get up more and walk around- but when I get up, I get this sharp stabbing pain in the middle of my chest that takes my wind away and makes me feel like I could fall down. I am doing it though. She also told me to take 2 deep breaths through my nose, out through my mouth, and on the 3rd breath breathe in and then COUGH!!! OMG, did I see a handful of colors of what?!?! Holy Mackeral!! It was something! Talk about pain....but that will clear my lung out. I called my pain management dr and also the breast surgeon and they are in agreeance for me to take TWO pills every 4 hours (originally dr said every SIX hours?! Good god I was in serious pain by the time the 4.5 hour went by!). Crazy, right?!  

So he ordered a new Rx for more valium and also for double the pain pills (Oxycodone 5mg 2 tablets every 4 hours). A friend is going to pick them up for me tomorrow. AMEN!! 

The output does seem to be a "lot" and goes from clearish/pink right back to dark red again with clots. I soaked through my binder and since I was such a "happy girl" in the recovery room (before and then after) and also upstairs, they gave me an extra one to wear! I felt like a famous woman! Everyone kept coming in just to talk to me and didn't believe I just had such a big surgery, lol. I was SUPER happy on the Dilaudid pump, LOL. 

I believe I did WAY too much reaching, leaning over, moving around,etc when I was on the pump in the hospital, because now I am in such pain and swelled up to the maximum- the good news? Looks like I have cleavage (a small amount of it anyways) though I was FLAT after surgery.....but with the swelling I am now looking like I have breasts again?! lol. Strange. 

Thank you for your kind words, your wisdom, and for your support. I am so thankful for my friends on here. God bless you ladies. xoxo

sandra4611

Noonrider, you are right. Alloderm hurts. It's common for one side to have much thinner flaps after the BMX than the other, which compromises blood flow and healing as well as invites infection. Nipples don't always make it. Not being in very good condition going into surgery makes recovery slow to a crawl. Pain sucks your energy that would otherwise go to healing. Sleep is an elusive goal. After a few days of this, depression sets in and you are sick and tired of being sick and tired, desperate for some sleep, and for somebody to take away just enough of this pain to let you breathe for 5 minutes.

Been there, sister. Been there and it SUCKS. It WILL get better. This is NOT going to kill you and you WILL figure out a way to get through it.

 

Mischief46

MarieJ, I forgot all about the deep breathing and coughing!  my nurses gave me this little contraption before I left the hospital.  I was to blow into it hard twice every hour or so and give a hearty cough.  She said the lungs can get fluid in them after surgery.  Sounds like you weren't told about that.  I was on painkillers every 4 hours around the clock the first 4 days and then tapers off to 6... Girl I hate that you are struggling so.  Tomorrow is a new day...praying for you.

sandra4611

To the sisters waiting for your surgeries, I know all the recent complications you are reading about are making your anxiety level rise. Even though people say you should relax because it won't happen to you (and they are technically right) it's not advice you can follow. In my opinion, it is just as helpful to hear about things that aren't going as planned as it is to hear from those who sail through with virtually no pain. Your situation could be on either end of the spectrum or, more likely, somewhere in between. The old adage holds true: prepare for the worst and expect the best. Learn the signs of when something is going wrong and what you can do about it. I had a whole list of things that COULD happen, and talked to my PS before surgery about them. He acknowledged that every single one of them could indeed happen, BUT even if they did, which was unlikely, he knew how to fix them. I was satisfied that I'd be in good hands. I'd prepared for the worst, armed myself with knowledge, and made sure everything that could be done, would be done. Time to let that worry go to the back of the line.

Know that we are here for you before and after your surgeries. Someone who REALLY knows what you are going through is standing behind you. Many times I've told someone that I'm "in their pocket." Silly? Yes, of course, but I swear it helped me to know that I could pat that imaginary pocket and get strength from everyone in there. So girls with upcoming surgeries, not only are we bringing out the Pink Bus for you, but we'll be in your pocket. Relax. We'll keep watch and make sure everything is ok.

 

sandra4611

So, a bit of good news. My surgery is back on the schedule for next Friday, October 3rd.

MarieJune

Ilovecoasters, my post op appts are on the 29th with PS (ONLY if I'm putting out LESS than 30cc's of fluid) if not, no reason to come in, since I have the visiting nurses coming out. If LESS than 30ccs (which the dr gave me a little pill cup and told me the top line is how much 30cc's is) then I will go in and get a drain out on each side. 

My BS post op is on October 6th. 

I make sure I use the sperometor or whatever it's called.....the tube we have to suck into after letting all our breath out first then suck in and mark the plastic numbers with the indicator that tells us how well or bad we did. I am up to 1500. It was overly painful, but I did it.....felt like I would faint, and then did it again an hour later. I have been trying to keep doing it every hour. Especially now that my right lung sounds "crackly" as the nurse said. I am on Bactrim also so I've been taking that. 

I'm on 5mg Valium which I cut in half (because originally I only had 12 of them?!?) But now my pain management dr is giving me more and told me take a whole one each time, and it's VERY helpful. (well, until I stand up, lol) Then I get this slicing/stabbing pain in my right side of my chest near the middle of my chest to my right area of my breast) What a strange sensation! Knocks me off my feet into a sitting down position.....It worries my Niece each time because I go so pale and end up gasping for air.....so crazy! Who knew this would all be so "involved" with this stuff? lol. Hopefully this is the worst of the worst,and things can only get better......

My RIGHT nipple is BLACK!! I was told I may lose it.....makes me sad, because it's getting darker by the hour.....but if one goes, I will just have the tip of the other one removed. The areola will still be there. So I'm staying positive, though it makes me sad....Staying hopeful and have a "plan" so that I won't be "let down"......so that's helpful to my healing process, to allow myself to "let go" of my nipple tips if I have to. 

Thank you for helping me through this!! SO glad the ones who have gone through all of this are here to walk me through this! My fever is down to only 100.3 now, so that's good! Positive things are happening, and I'm making sure to smile, be positive and not let the pain get the best of me. I'm ALIVE, and thats all that matters.  

Hope you continue to heal and get well on your own journey. I am about to learn how to paste pics up on the pic forum......I took TONS for educational purposes, and am ready to show everyone my own journey. I feel it will help me through each week, and I know I will see improvements from looking back at pics from day 1 all the way to the end of my journey when I get implants.  

Lots of positive thoughts being sent your way from me.  

Marie June

MarieJune

Sandra, THAT IS EXCELLENT!!!!!!!!  So excited for you!!!! HURRAY!! I wish they had a party icon on here, because you need some streamers, party blowers and some confetti!!! I am so happy for you. I have been praying SO MUCH each night for you to have some great news come through and to be able to advance to your surgery.......so glad prayers worked! 

God Bless you. You're one of the sweetest people I've met on here. If anyone deserves an amazing outcome, it sure is YOU!!  You've endured SO MUCH, so to finally get a date, you're moving along in the right direction, and things are looking upwards.  

Many Blessings from me to you. xoxoxo

MarieJune

MarieJune

sandra, strange you should say that about your friend and her lymph node being cut.....I have this HUGE lump right in the upper part of where my left breast used to be and there is a HUGE lima bean shaped lump popping out of my skin.....I was told it's "just the part of the drain" but I don't have anything like that on my other side......I find that to be a little awkward?! I drain my drains 4-6 times a day because 2/4 (one on each side) seems to put out SO MUCH FLUID!! Sometimes pinkish/clear then next time dark red with clots......so odd! 

My fever has gone down for now.....was told visiting nurse won't be coming back until Saturday?! How fun, lol. I get to change my OWN bandages (which I would RATHER DO) because it hurt when she did it.....She told me I didn't need to use gloves too!!!!! I use an alcohol soaked pad (like a nail polish remover pad) and slide down the entire tubing until it is empty- sometimes have to slide down it up to 3 times to get the clots to go down...Glad I don't listen to people like that, and follow my intuition! I took medical assisting and KNOW a LOT about staph infection and other infections! lol.......I will be damned if I don't use some type of precaution while emptying my drains- lol. 

If I happen to not feel any better, and my fever spikes back up, I will certainly go back to the hospital. My incisions look AMAZING! The dr stitched the inside and then glued the outside.....doesn't even LOOK like incisions! They are large, they take up the entire dimension of where the crease of my breast used to be, but WOW, did they do a great job or what?! I am amazed when I finally got to see it. I am draining fluid and blood from where my tubing is placed into my skin below my incisions on both sides, so I will have to keep changing the gauze....seems I'm a "leaky faucet" and the tubes aren't stitched in as well as they should be.....so I will also keep an eye on that. 

Thank you for all your help. You truly are a BLESSING! After all you've been through, you STILL find time to be there for each of us. You truly are the "Mother Hen" of our group. So glad you're in with us. xoxoxo

Marie J 

MarieJune

Lilith, Sjacobs, & Dlove, Thank you SO much for your kind words and healing dust. I truly appreciate the kindness you've poured out to me, especially with what each of you are enduring right now. Thank you so much. ((((((HUGS))))))

Marie 

MarieJune

Noonrider, the pain meds NEVER make me loopy.....I am usually on a Butrans Patch for my spine issue and for my herniated discs in my neck so it blocks out the pain meds somewhat....I just got off the patch the day before surgery, and it stays in my system for up to a week.....but even so, I am just never "loopy" or feel tired from pain meds.....I actually am the OPPOSITE! It's strange. I would be up and cleaning if I had the use of my arms. LOL. Weird, right?  I'm a strange one, I must admit. Not one of the usual....they gave me 350mg of Versed & 550mg of Fentanyl into my IV while I was getting my pec nerve block (on each side of my upper chest) and I ended up being WIDE AWAKE.....the anesthesia man said "you aren't going to bed anytime soon, are you!" LOL......I felt everything, so they kept upping my dosage, but usually Versed makes people go into a twilight sedation....It was SO FUNNY to see all the drs and nurses realize how tolerant I am to pain meds......so it's no surprise that the Oxycodone 5mg's does NOTHING.....glad it's bumped up to 2 of them, and now I can finally take 1 full Valium 5mg so that I can stop these crazy "knock me on my bum" spasms I suddenly get. I only got 60cc's of "fill" in each TE, so I WAS super flat until last night when suddenly I realized I was puffing up and SUPER swelled. I tightened my binder (which I am IN LOVE WITH!!!!) and made it tight as I could which is helping relieve the pain and pressure somehow.....when it was looser it just wasn't helping. Most people hate the binders they give with the flowers and looks like a 1980's crop top with pleats on it......but I am in love with this sucker! lol. It sure does help. Holds me in and helps the swelling go down. The drain holes on my right side are a little sore, but nothing I can't handle, and my left side is leaking clearish fluid, but overall, the drains aren't bothering me. 

I DO have the ON-Q pain pump balls in their little bags they come in and thought they were GONE, but realized they last for 5 days, lol. I had to look that up because you can't see the fluid inside, so I thought they were gone but NOPE, still getting some kind of relief (not that I feel it, but I'm trying to assure myself "it's working" lol)

Trying to stay positive through this rough time, because I could be in worse shape.....I'm glad I'm alive, Glad I laughed a strange and funky belly laugh with my kids (who were dying laughing because I did NOT sound like myself) but not being able to use my chest to laugh was a new experience, and made sure to smile as much as possible and not get myself down. I'm staying as positive as I possibly can, because I know it can only help me in the long run. I'm glad I have the drains!! Can't imagine going in and having them manually stick a needle in there to remove the fluid!! NOPE!! That's not an option. I'll keep these suckers as long as I need them and tell myself they are my "friends" because if I don't lose this fluid, it will build up and harm the breasts I wish to have once I get my "squishy" ones 

sandra4611

MarieJune, I asked my friend Moonflower to comment on your fluid buildup since she's had experience with it. Look for her post here soon.

enlm20Erica

Sandra, just want to say thanks for the encouragement. It feels good to talk to you and others and read these posts, I have great family and friends and a wonderful husband but I don't think they really "get it" but all the ladies here do. Reading everyone's story and being able to post my thoughts is helping me get through this, I'm really grateful. 4 days til my surgery and because of you all I feel very well informed on everything, the good the bad and the ugly, and in some way, it makes me feel better. 

Thanks to you all for support that can never be measured! 

Mulligan

Yay Sandra, glad your surgery is back on. I'll be thinking of you that day as it is also the same day as my 1st chemo treatment. 

Good luck muzakmom tomorrow I'll be thinking of fast and easy recovery for you.

MarieJune

Thank you so much Sandra!! My totals for today (in the little urination pee cup thing measured in ML's NOT CC's was: 110ML from R1 (right #1) drain; 110ML from R2 (right #2); & 60ML from L! (left #1 drain); 64ML from L2 (left #2) drain. So total output from RIGHT SIDE= 220ML's & LEFT SIDE= 124ML's. 

I am on day 2 post-op. I am having extreme shooting pains from my right side which seems to be placing much more out than what I think is "usual"......

Thank you for contacting your friend so that she can help me through this. 

 

much love to you. xoxo

MarieJune

MarieJune

enlm20, I am thankful for you being grateful for each of our posts. I certainly DON'T want to scare anyone off with my own personal journey. I don't regret a single thing I have done....I would never go back and change the fact that I went through with mastectomy on both sides with Allomax placement and TE's. I am so HAPPY I had it done. I may be having a rough day today and also yesterday......but I feel it is important to let others know about the good, the bad, and the in-between. I feel it always helps. I'm glad I haven't scared you away.  

This certainly is NOT the "normal" for post mastectomy. I have Systemic Lupus and this could be playing a factor into this whole thing. I also have a bleeding disorder and can't take Heparin, Warafin, etc.....so clotting just has to happen and I have no choice but to cope with it. I am doing so with a smile on my face, despite the pain I feel. I know this pain is only temporary, and I WILL get through this. 

I hope through my own personal journey and with the few issues that have risen, I hope I have helped someone, and hope someone will benefit from it, in case they are going through it themselves.  

You're a strong woman and I know you will get through your own surgery, no matter what the outcome, good, bad, in between with grace and a great attitude, because you already have such a positive outlook on everything. I myself, am trying to remain VERY positive through this pain, because I know this WILL subside. If I lose my nipple, I will take the other one off surgically.....the great news is that only the tip of the nipple becomes dead, and the whole areola will still be intact. I hope my black nipple will turn back to a great color and this can be over, but I am all ready for plan B if I happen to NOT recover my color and life into my right nipple.......I always come up with a plan so that I am never left in the dark. 

I had AMAZING surgeons!! My incisions are EXCELLENT!! I am one lucky girl! Pain is only something temporary.....I know I will get through this. I felt it was educational for others to know what is going on. I hope in NO way that I have scared anyone away from having the surgery. This is one of the most REWARDING surgeries of my entire life. I am blessed to have had the opportunity to be able to do this BMX. I wouldn't change a single thing, pain, swelling, left lung getting filled with fluid and crackling, etc! I wouldn't change a thing. All I can do here on out is to try harder to make tomorrow a better day, wake up, do my light movements to get my range of motion going a tiny bit more, and then to smile, laugh and live tomorrow like it's my last. Each day brings a new challenge, so thank GOD I love challenges.  

I'm glad you have the positivity you have! It will benefit you incredibly through your surgery. My blessings go out to you. xoxo

MarieJune

MarieJune

Muzakmom, BEST wishes today!! It's 2:13am my time (here in Westfield, MA) so today is YOUR day! My blessings and prayers are with you. I pray everything goes smoothly and you sail through this part of your journey. BLESS your heart.  

((((HUGE hugs))))  &       ~*~*~*~*Rapid Recovery Dust~*~*~*~*

Marie June

MarieJune

p.s. TO MULLIGAN. You truly saved me so much agony by giving me those gifts in the mail: the pink pockets!! I have them on the inside of my shirt and now that my ON-Q balls are smaller, I am able to swap my double drains on both sides in the pocket and attach them with a baby safety pin to the bottom of my binder (it has a little tab) and now I can add my heavy "bowling ball" type things into the pockets!! I was carrying the black cases around with me, but have bumped myself so many times!! OWCH!! So I now exchanged the places and my ON-Q pain balls fit right into the pockets and I can move MUCH easier. You are truly a BLESSING!!!!! Can't wait to drop down to ONE drain so I can exchange my cute binder for the mastectomy shirt that someone else mailed me.....Looking forward to ONE drain. LOL. But......I am SOOOOOOOO Thankful! You have truly saved me so much pain and confusion (can't tell you how many times I was "blonde" and FORGOT I had the balls to carry both of them in their bags and began to get up without them?! Crazy! Thank God my Niece realized rapidly and told me or I could've ripped them out of their own incisions that they are stitched into. LOL. 

Mulligan

MarieJ, I'm so glad to be able to give it to you to use! You are such a sweet person, I'm so sorry you are going through so much pain. I too, had forgotten a couple of times during the night that my drains weren't in any pocket and they actually dropped and I instantly felt the pull and pain of the weight but I found that my ps sorta twisty tied the drains with stitches to my skin to prevent them from easily being pulled out. I didn't realize how far the drains are in your body, all the way up and around your chest. So it may be a small comfort to know even if you snag them a bit hard ( yeowch) the likelihood of pulling them completely out is rare.

So glad your niece is there to help you and like everyone here and I'm sure your doctor too have said, Take it easy, don't push yourself, relax and let people help you. I was told, if you push yourself even a little too hard, you will push your recovery time farther away.

enlm20Erica

MarieJune you definitely have not scared me off You are an inspiration and I admire your courage and your strength, if I have half as much fight as you i know I will be just fine I know these obstacles will make us all stronger and hopefully we'll be able to help others along the way. We just gotta find the silver lining in everything and be grateful. In some ways I'm preparing myself to appreciate the pain and what's to come, knowing that it could have been so much worse. Some don't have the option of surgery or treatment but we do, and I must thank God for that alone. I pray that you continue to recover and each hour gets better and better, this too shall pass! 

Su-CQ51

good luck today MuzakMom.   Best wishes for clean margins and speedy recovery!

So sorry you're having such a hard time MarieJune!  It must have been a scary time for you!  Extra healing dust ✨✨ and gentle hugs!

Awesome news sandra!  So happy for you!  

I am happy to say my Lx and SNLD went well yesterday.    I have one drain that not doing much but will talk to them about that when they call today.   Dye injection, wire location and mammo were all much better than I'd imagined lol   The gama camera to trace dye was a bit claustrophobic but found closing my eyes helped.  I found it took the longest and had to stay still for so long!   I'm not in too much pain and am taking combo of Xstrengh Tylenol and Motrin every 4 hrs for first few days.  I don't feel like I need the prescription.  Will see if today is same but anticipate it will be.    Thanks for your well wishes Ladies!

Take care everyone!   

enlm20Erica

hi all! Going shopping for some post op supplies...any suggestions on helpful items that I will need?

Mulligan

Enlm, I'm sure the gals on here will have lots of helpful ideas for you. Few things that helped me was dried apricots (or prunes if you like them)for when you are constipated from all the meds, a big bottle of hand sanitizer, made everyone use it when they came to see me and Putting it on your drain tubes when you have to drain your bulb and tubes helps to glide your fingers down the tubes. If you have a recliner use it as your bed, easier to get in and out of. Get a couple of cheap button down shirts, you will not want to put your arms up to put on your shirts. 

Best of luck!

enlm20Erica

Mulligan, thanks! I actually do like prunes don't have a recliner tho, I got this chaise in my bedroom, closest thing i have to a recliner, it may work. Definitely gonna get those button downs and sanitizer!  Thanks again!

Lilith08

Been meaning to ask--has anyone used a foam wedge for sleeping in a more upright position? I saw those on a site somewhere (don't remember now) with other post-MX supplies.

Ilovecoasters

I saw my breast surgeon today to review pathology report. All clear margins. No cancer in the skin, bones or nipple. It was in 2/7 nodes. I see the oncologist on 10/2, but she seems to think I will need chemo. Possibly radiation. Stage two. I'm pretty devastated. I know it will push back reconstruction. Just feeling like today was a one step forward three steps back kind of day. I've been wondering if I made the right choice to have reconstruction. Cried a lot today. My doctors are marveling how fast I am healing but it's only external. I'm not sure how to heal inside.  

enlm20Erica

ilovecoasters, so sorry to hear the unfortunate news. Just remember it all will be over soon treatments and reconstruction and you will be able to look back and say "I made it"! I haven't had my surgery done yet so I can only imagine how you're feeling but I have been through some rough things that I thought would last forever but they didn't! And this too, will not last forever. And it's okay to cry, crying is a release that we need to have. I'm praying for you and I know you will be stronger and better when this is all over. 

sandra4611

No one should ever be afraid or hesitate to post their experiences. In my opinion, it's a disservice to others by not honestly describing your journey. If you are happy and it's going so much better than you thought, let us know! You are not being insensitive to others who might be having healing issues or pain issues or difficulty emotionally. I had such an easy time with tissue expander fills while so many others complained, so should I have kept my experience to myself? I ended up not having radiation or chemo and was thrilled. Was it "rubbing it into the other ones' noses" to post how relieved I was?  What about after the exchange when everyone else was saying what a piece of cake it was and I was miserable? Was I being "Debbie Downer" to mention it? No, I don't think so, but others may feel differently. Do I help others by keeping my disappointments to myself in order to not upset someone else?

I say go for it. If we can't be honest with one another here, where can we? If all we post is sunshine and lollipops, are we setting someone up for a rude awakening when their experience is different? We are all adults and all going through an unwanted and shocking experience. By joining BCO, we are committed to helping ourselves get through it but also helping others with our wisdom or words of caution. Please don't ever think twice...we are here for you, good or bad. No one understands like we do.

 

enlm20Erica

Mischief,  just seen your reply from the 19th! Thanks for welcoming me and I really appreciate the prayers! 

BMX with TEs and node test , about how long was the entire process?

enlm20Erica

Birdgirl, also just seen your reply and I will Definitely need and ask for those meds! Good news to hear it felt like the best nap you ever had.. at this point I am desperately in need of a good nap lol, almost anticipating it lol. Thanks for giving me another great way to look at things!