September 2014 Surgery Sisters

Surgery Sisters-

As you might know my treatment plan for chemo and hormone therapy is dragging along.  So I'm focusing on the tissue expander exchange.  I know it's like an in and out day procedure, but what is recovery like?  Am I back to no driving?  Slowly building up range of motion (that I still don't have 3 weeks post surgery)?  Any tips?  Like Smitty I switch insurance plans 1/1 so I want this plastics guy to do the exchange.  First of two fills is Wednesday.  Nervous about pain!  I think I'll have to remind him too that I want to be a B.  He likes C, which might look better on this body but there is no way I want to ever fit into a D cup again!

That was a good question minivan, I have been wondering the same thing.  My exchange is scheduled for 12/11. 

Thanks for the input Mischief46 it is good to know that the exchange might have a quicker recovery time. 

I know though that I will have drains put back in as my PS told me she always puts drains in even with the exchange.  Ughhhh!  I just hated the drains with the BMX!

Thanks to those of you sharing information about your exchange surgery. I'm trying to figure out if I can get away with just having friends check in on me for a few days after the surgery rather than having my mother fly out yet again. It sounds like I can handle this without her.

Smitty, my discomfort from the final fill felt more like the iron bra feeling that I had right after the mastectomy. It's not nerve pain.

Me too, I would have been fine.  My husband stayed home the day after surgery and went back the next.  He put everything I needed on the counter so I wouldn't have to reach up for anything.  Although he forgot a coffee cup and I just stood there at the counter staring up at it wondering if it was worth it to reach for it.  Of course it was, I love my coffee.    That is the thing to remember, since the pain is minimal and the range of motion isn't really effected it is hard not to do too much to soon.  I really tried to not use my arms to much at all for the first few weeks.  

Just saying good morning to everyone.  I am grateful for the compassion I've received from everyone here.  

Thank you Sandra, some days are just extra hard and extra emotional. I have not found any relief and I am kicking myself for not calling my Dr. I will have to wait until Monday now. I just feel guilty about having the fills so quickly and wondered if I had brought on the pain myself. But as time goes on and it does not subside it has to be something wrong.

My husband just said that. I think I will give his office a call. 

smitty, I pray you get relief and find the cause of your pain from the fills. My heart goes out to you. 

Noonrider, I pray your new surgery (nipple removal, scar touching up, & TE's replaced) goes smoothly, you're back to feeling better & do well. 

To the others not feeling well, having pain, etc, my heart is with you. I know how you feel. Prayers you all get through this phase and onto a better path. 

Update on myself: Day 5 in hospital~ was supposed to have TE's removed Saturday, but is had been massaging the areas under my cellulitis & lymphedema, and realized TONS of fluid was flowing out of my left side into my drain. I got 90cc's output in one day, 88cc's the next! So my PS said she will "let it go & let vancomycin work until Sunday or Monday" she came in the morning & saw that the antibiotic is finally kicking in, and I'm less red (more pink) and have less swelling (my nipple looked TERRIBLE!! Fat, swollen, & aimed downwards?!) lol. Have to laugh because my small nipple being king sized was just too humorous ! I finally got clearance to KEEP my expanders, IF I keep doing so good on the vancomycin, but HAVE to get a a catheter/port line to go home with to continue on the vanco via IV for awhile. I'm good with that! she asked if I'm ok staying here a couple-to-few more days? Uhh, as sick as I was?! HECK YEA! Let's really make sure I'm better before letting me go. she was glad I'm not eager to leave and allowing my body to rest & heal. I'm fine being here....I'm glad I'm being taken care of.....miss my kids,  Niece & cats, but FaceTime is a miracle. My children visited me, I "broke bail" and went downstairs with them because hospital rules are: no kids under 14. They quickly saw my room & we went outside in the pavilion here still Mercy Hospital in Springfield Ma and in the front of the building. Tears flowed from their eyes when it was time to leave, then streamed from my own eyes, but I told my 7 year old twins (son & daughter) and 11 year old daughter that "IF mommy never saw the plastic surgeon for my post op to check new drain, I never would have known I was sick, and having the binder on, was holding my bad nasty infection IN, not letting it breathe" and they understood, I was days away from fatality if I hadn't gotten checked. I slept, took meds, and was in severe pain, but when the emergency room sent me home, I never thought I could have anything other than just low pain tolerance. I would've continued to sleep and get worse. The infection is right in front of my heart! And it could've been fatal.....glad I had my ps visit scheduled! 

So I'm glad with the decision to keep the TE's (right as I made plan B to rid myself of them and heal, then get smaller ones in 4-6 months).....looks like when we accept our fate, God grants us a better outcome. I was planning on getting 500-525cc implants (far from now, considering I haven't even been filled!! Only got 60cc's at mastectomy on each side), but am drawn to the anatomical 425cc FF (full height full projection) and more than a handful. My instincts are telling me go smaller, so I'll listen to my instincts, and find it amusing that in every room at surgeon office I go in, I go straight to the 425FF on display. I have a 500cc expander and it's coming out of the sides of my ribs without fills! So I'm sure smaller will be best. Here I was all prepared for being flat for months to come, and suddenly take a turn for the better. I'm so happy, but still know I'm not in the clear. This infection lingers, it can come back, and I am scared I get the drain out in a week or so, because that's where the infection came from- my drain hole. I have pus and fluid coming out of it.....yuck! Thank God my OCD has me using the cleanest products and constantly changing bandages with tegaderms over it to keep air and other toxins in. 

Thank you for all your thoughts and prayers. It's been rough, but my drain is my savior, to get this junk out of me! Though it caused this, if I didn't have a way to rid myself of the thick fluid coming out, who knows what would become of my left side that's already gone through so much in 2 years. Righty is good- small seromas that we're hoping absorb....if not, drain will be placed in a few weeks..... Time heals everything. I smile through the pain, take the bad with the good while savoring the good, let God help me while I pray, and prepare the worst, pray for the best. I laugh and smile daily, which helps me get through. I know this process isn't what I "expected", but when has my life ever gone as plan with Systemic Lupus always "surprising" me? Lol. 

I'm just glad I'm starting to get better. Not in a rush, just taking it minute by minute, finding ways to help myself stay happy. 

May you all find comfort during your sad days, find peace during your downfalls, and find courage to get through all the trials & tribulations we face. I know each of you can get through this time, and will look back amazed at your own strength. God Bless each of my lovely Sept. Surgery Sisters. ((((Hugs))))

Marie J Mello

thank you my dear friend for your kind words....there very well may be many more challenges, but I'm going to hurdle each one.  

Can't wait to look back once I'm past this & say "wow, I did it!" I look forward to that. And with each downfall, I'm able to help others. 

awww, jSjacobs, I'm glad I can help you keep your chin up. It's not easy, but we have to literally go hour to hour. Each hour changes, then the next is sometimes better. if I get bad news, I try to see it as God's will, and what's meant to be, will be, if it's not meant to be, then God won't allow it. That helps me prepare for the worst and when good news comes through, I'm literally in tears of happiness.

I'm hoping to teach anyone who's facing problems with their mastectomy, or people who are scared to get one, that this STILL IS the best decision for me, sick, agonizing pain & all. I've had a few moments (literally cried and said to my Niece, "I never should've got this done! I'm such a burden" and she's amazing (also my caretaker & my kids' caretaker doing it all right now through this) she tells me, "how many more weeks could you wait for test results? You've waited 16 weeks in 2 years! That's 4 months for pathology results, and conquered cancer already in 2012! What would you wait for? More cancer? Because those microcalcifications would become cancer and pash tumor was blocking out everything underneath on the boob u already had cancer....I'm proud of your bravery and your choice"

Hearing a 21 year old say that brings me right back to reality and I realize she's my angel on earth. I'd be nothing without her daily laughter and smiles.

Life is precious, I make sure to do my best to LIVE today, because we only have our temporary bodies God gave us and we have to stay above the negativity all around us. I've ranted, complained, rented space in my head with others' bologna, but it only brought me down. I do, however, think it's healthy to come here, on this site, and let everyone know the truth so they know what to look for. Glad I'm not scaring anyone but helping them. You're so sweet to say such kind words.

I put makeup on yesterday and got dolled up......here's a couple pics.  

Marie Mello

(Facebook: marie.mello.12@facebook.com)

Marie,

So glad you are finally getting proper care. Also glad to know Vancomycin has another fan. I've been singing its praises since it saved me a year ago when three other antibiotics failed to affect my infection. Your surgeon sounds a lot like mine. He had a gut instinct that he should wait one more day (and then one MORE day, etc.) to see what miracle Vanc could do rather than rush into the second surgery. He also used the words, "I want to wait until this area declares itself." Area by area it did...some didn't survive the infection but other parts did, thanks to Vanc and a dedicated PS. While I had to lose a permanent implant because there was no longer enough skin to cover it, he put in an empty TE on day 14 while we were still fighting the infection...and I didn't lose it. I'm confident you will keep your TE's. Some of us just have "scenic detours" on our way to success.

Has your PS talked about a PICC line instead of a port? I'm a huge fan of PICC lines. They put them in the inside of your upper arm. (The only thing you feel is one sting of lidocaine.) After it's in you'll have no more sticks...blood draws are done through one of the two lumens at the end. One is for blood draws, the other is for IV infusion. You can keep a PICC a year or more and many people get them for chemo instead of a port because you won't have a scar on your chest. The tiny hole & suture leave a tiny mark on the inside of your upper arm which fades quickly. I had the PICC for 7 days in the hospital and then went home with it for 7 more days until the PS felt he couldn't wait any longer to remove the remaining dead muscles and soft tissue. They do blood draws after every third infusion to check your liver stats and your home health nurse will change the sterile dressing when needed. My Vanc came in round softball sized containers (my home health nurse called them party balls) like this:

They have tubing at one end which snaps into the PICC lumen and took about 1.5 hours to infuse the Vanc. You only "hook up" twice a day. Although the lumen area has to be kept sterile when cleaning it, the daily care is super easy (you and your niece can easily manage) and the best thing, the "party ball" is portable! I used to put the Vanc into my bag before I left the house. It will even slip into a pocket when it's partially infused. The ball gets smaller and smaller, finally you are left with only the center with plastic wrapped around it. You can sleep with it and don't have to "un-hook" it all night or worry that you will roll over on it or dislodge the PICC. The Vanc is kept in the refrigerator until you need it. You flush the lines before and after and take care to keep the PICC dry. (I used a sleeve with drawstrings at the top and bottom.) Sterile dressing is changed once a week if you keep the PICC longer then a week. Easy, peasy. My husband and I were taught by the PICC team how to take care of it, so we recognized that several of the visiting nurses were not doing it right. (He fired two on the spot!) We just went back to see the PICC team at the hospital for the dressing changes every week but allowed the (new) visiting nurses to do the blood draws and get them to his/her lab. The lab sent the results to your doctor. After the second surgery, I was on Vanc another three weeks. In subsequent surgeries, the PS has ordered it for 10 days until he is sure no infection will develop.

two questions: are small pink spots on breast when you have TE a concern? Why does the bottom of my new breasts with TE look like someone took a meat tenderizer to it? The plastics doc kept saying I had a lot of skin so I didn't think it was new skin. Is it the texture of the te showing?

Thanks for the help.

Sorry minivan I wish I had some info to help you.   Hopefully someone else has seen/experienced it.  MarieJune posted a pic of her cellulitis on this thread Oct 21.   Does it look anything like yours?

Good luck tomorrow noonrider.   Hope all goes well and speedy recovery.

Thanks Marie.  That's the orange peel that I have.  No redness there or different colors after pressing.  Seeing the PS on Wednesday.

First fill….maybe?  I'm not sure how I feel about that. Nervous for sure.  I hate these TE so much and what I currently have isn't too bad.  I wonder if PS will consider 1 fill?  I can always pad the bra if I feel too small, right?  I'd like to run again someday and the thought of these big fobs just doesn't do it for me.  I guess it gives me something that is somewhat known to worry about, rather than things like prognosis and chemo/drugs which I won't know about for 22 more days….but who is counting!

well guys looks like  Iwill be joining the chemo crew. Just left my oncologist and he did because of my oncotype score and being BRCA2 positive he strongly recommended chemo. . Cytoxan and taxotere 4 rounds starting Nov 17. I cried but then realized this is to HELP me stay cancer free I know chemo comes with its own problems but living to see my babies grow up and getting old with my husband out weighs it all. Don't know how this will affect my reconstruction but I'll deal with it when it comes.