NOLA in September?
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Dragonfly - It's American Luxury Limousines. Address is P.O. Box 19878. New Orleans, LA 70179 phone is 504-269-5466. That's a wonderful idea to send a thank you! (So our last driver told us about the NOLA "Zombie Walk." A bunch of people dress up like zombies and walk around like zombies and go up to the windows of bars and stuff and act like they're trying to get in, like zombies. And then they do go in occasionally for a drink here and there... Sounds like a great idea for next Halloween!
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Minn, thanks for Donn's information. I think I need to go through the Center though, and I thought it was someone by the name of Cynthia who now schedules the tattoos, although I've never heard of her before. I'll call Katie tomorrow and find out--thanks Spring.
Jaimie, thanks for the kind offer. I'm actually taking a little break from sitting on the floor photographing bridal belts and thought I'd check in here. These belts are HOT, and I went to downtown L.A. a couple of weeks ago to find beaded appliques so we can make them, since the bridal manufacturers are charging outrageous prices and I knew I could do better and offer a wider selection. I couldn't take the photos without a camera, so I'm glad that I found one, and thankfully it was the expensive one I bought just for this purpose. How would I get you to do photos....seems like you would need to pay me a visit!!!
I meant to share that ALL's driver Glenn's daughter is doing better and he said that she'd moved back into her own place after moving back home with her parents while in treatment. He was very touched to hear that we've been praying and thinking of them. A few of the drivers are into antique cars as is my DH, who made a slide show set to music specifically to share with Glenn last month. Glenn brought a photo album of his cars and they shared some cool stories.
Lynn, I've heard mention of a female tattoo artist in Redondo Beach and she is supposed to be very good, but I'm going back to NOLA for mine.
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Let me start by apologizing if this post goes long, and I expect it will. I went to the doctor yesterday and he gave me a shot of dexamethasone which means I have been up all night and will probably be awake until this time tomorrow morning. Steroids do a number on me. But I was hurting so badly that the relief was well worth the sleep I will lose. But the lack of sleep, along with the muscle relaxers and the pain meds, will possibly make me a bit long winded. Plus, who knows how coherent I will be. If you find this post should be deleted and I try again after the meds wear off please be a sweetheart and let me know. ;c)
MINNESOTA, I am afraid I will be needing membership to the Compulsive Perfectionists Club (CPC). I know this because I have reached my final decisions regarding the remainder of my reconstruction and all of them I believe should qualify me for membership!
I had the good fortune of having the five women who know me best in my home for Thanksgiving -- all at the same time. My three daughters and two sisters are perfect examples of what made this holiday so very special. To think that last year I was right in the middle of chemo. I had actually received my third treatment three days before Thanksgiving so needless to say, while last year was a memorable Thanksgiving for me, the memories are not pleasant and it certainly is not one I would ever want to repeat.
But this year, while the husbands were busy watching ball games and discussing at great lengths the pros and cons of heat pumps (why???) I had the pleasure of having all of my favorite women to myself. By the way, let me give credit where credit is due. They played major roles in my reaching of decisions. I was shocked at how well they knew me. In fact I could probably have them write recommendation letters for the CPC. :c)
Just to give a little insight to the level of discussions that took place let me share with you that my daughters are 25, 28, and 30. One is an accountant, one a lawyer and one a psychotherapist. (Yes, I am a very proud Mama!!) My sisters -- one older than me and one younger -- the older sister is an RN and has Stage IV ovarian cancer. The younger sister just retired this past January from being a supervisor and court liason for the Department of Children's Services for 15 years. She took retirement out of the blue after having dinner with me and my older sister. We went out to eat on a Friday and she retired the following Friday. When I asked her what brought that on, she said "There is nothing like sitting across the table from your only two sisters, and realizing they both have cancer. Suddenly what is important becomes crystal clear. And I needed time to enjoy what I had."
So I tell you that to say it was wonderful discussion. They all had obviously done lots of research. They were well informed of the options related to breast cancer -- all aspects of it from diagnosis to reconstruction. I will be honest. I spent a lot of time just crying. I was absolutely overwhelmed at the support I had. I knew they all were supportive but to have them all in one room, all to myself. Absolutely overwhelming, but absolutely wonderful.
Let me jump ahead to the decisions. (Aren't you glad I recognized that I was probably rambling) :c)
But before I share my decisions, please understand that I do not intend to offend anyone. As you know all of these decisions we are faced with are very personal and while I may chose differently than someone else, I do not pass judgement on any decisions that have been made. So please don't misinterpret what I am about to say. I am proud of each one of us for the decisions we make.
That said, I am the type of person who will never be happy with the flaps aka patches. This is part of what will qualify me as a member of the Compulsive Perfectionists Club (lol). Every time I see them I will hate them. Unless the scars become completely invisible and the color and texture somehow miraculously changes to match the skin left after my skin sparing mastectomy I will never be satisfied. So I am going to ask Dr. S to reshape the flaps so they are the size I want my areola. Then when I go for my tatts I will cover theflap and the scar with the tatts. Fortunately my pre-cancer nipples were fairly large. And I liked them a lot. So I want them back. Dr S will actually have to remove very little of the flap so I think this is very doable. Plus I am having the nipples reconstructed rather than just doing the 3-D tatts
I have decided that I will be having my tatts done by Earleen at the Asheville Permanent Makeup Clinic in Asheville, NC. You can google it if you want to see their webpages. They have lots of great pictures of their nipple tatts, areola as well as the 3-D ones. I have read a lot of wonderful things about them. Not to mention that she does them for free for breast cancer survivors in honor of her mother. I can honestly say that didn't play a role in the decision making other than to the point that I have a lot of respect to those who give back like she does.
I also will be having the Lymph Node Transfer surgery. I do not want to let my lymphedema have any more control of my life than absolutely necessary. After reading so much that all of you have shared I feel very confident that I am facing a great deal of lipo as well as excision on my thighs and arms. Knowing that this will put me at an increased risk of possibly developing lymphedema in the other arm or worsening of my current lymphedema I still will do it willingly. Oh vanity, you are a sly one.But I just feel that I have to accept responsibility for my actions. I have complete confidence in the skills of my doctors. I believe they can successfully transfer lymph nodes and lessen my lymphedema risks. I would rather be proactive and do all I can to help my lymphatic system get as close to normal as possible than to live in fear and regret of not taking the chance while I could. Just think of the lymph nodes that will be basically thrown away with the excised skin. Why waste them. Plus, who knows. Maybe my experience will help someone else to make their decision. I have no reason not to do it that I can think of. Only reasons why I should.
On another note, please keep me in your prayers on Wednesday. I have to have a liver biopsy. My liver numbers just get worse and worse so they have to find out what is going on and the only definitive way is through biopsy. I would like to think it is all just left over chemo crap that will go away on its own. I quit taking my Effexor a couple of weeks ago hoping that is all that is wrong. I got my medical records and was looking back and noticed that my liver panel started getting worse about the same time they put me on effexor. Every panel they have done since I started the Effexor has been worse than the one before. I know one of the side effects is liver disease. Not to mention it may have been the reason that I am now 10 months out from my last chemo treatment and my hair still is growing in patchy. I am going to have beautiful boobs and look like a dog with the mange. :c(
Okay, that's enough for now. It is daylight outside so that means it is time for my coffee. I have done better with that as well. I used to drink about 4-6 cups of coffee every morning (12 oz cups). And of course, skip breakfast. After all, I was full of coffee. I now have one 6 oz cup but I take the time to really enjoy it, sitting outside and welcoming the day no matter what the weather. Today I get rain. That means coffee in the garage with the doors up so I can still enjoy the beauty of God's power!
Hey, I did a preview of this post and even though I recognized I was rambling earlier, it didn't seem to have much of an impact on stopping the rambling. I could just cancel the post for fear of embarrassing myself but then what if there was something in here someone needed to know. But I am really sorry it is so long. If the website starts limiting the length of acceptable posts I guess we will all know whose fault it was. :c)
-- Ann
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Ann, beautiful post! I've had my share of steroids in the past month (cervical disc issue) and pain meds. My friends have laughed at my emails that ramble, are horribly misspelled, and occasionally incoherent. I wish you good results on that liver biopsy. Sheesh. I presume they've tested you for all the Hep stuff, esp Hep C?? Just the FNP in me thinking out loud.
You will LOVE Earlene. I haven't completed my second stage yet, but I've decided, too, to try to get the flaps smaller (the radiated side probably can't get down to nothing, but we'll see!) Then do nips, then go see Earlene. She's beautiful, professional, and fun to be around. I had lunch with her a couple years ago, before I had my implants out.
Opps. Running late for work. Y'all take care and have a good day!!
Anne
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Thank you so much Eve, I'll get to work! Also who was it working on the scrapbooks there at the center? We looked through them and they are amazing. I'd love to send in a page of my own, but wasn't sure if they are full/done or how that works.
Ann - sounds like you've really put a lot of thought into your decision. I'm so anxious to hear how the lymphnode surgery goes. Keep me posted for sure.
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Hello lovelies! I am back and have missed you all. I am only 7 pages behind now
.....the 4 am insomnia helped me catch up today! OK so Have to do some research on other techniques....our B and B lady in Florence just diagnosed being given option of similar to maybe a partial LD to replace a quarter of her breast sort of sounded like what Ginnie had when they went back and did a fix?....she was NOT about the muscle being disrupted so OF COURSE I gave her all the website info and a quick show and tell as she was late for her hospital appt and we were on our way to the train to Roma. She is originally from NYC but has resided in Florence so has dual citizenship (I think)....anyhoo....she did say 'they are perfect' and I did find myself comparing them to the sculptures at Accademia(museum in Florence where "David" is housed).......it was amazing- the whole trip but again think I appreciated it more now rather than 2 years ago when it was originally planned and then I was diagnosed so it had to be delayed a couple years-I'd never have been able to compare my breasts to the sculptures then! I'm happy to report I tolerated way too heavy bags thru way too many airports buses, trains- LE a bit- sure it has nothing to do w/ all the great food and wine I consumed
either YIKES- no more pizza, panini, Chianti, Vernacce or bruschetta for a while.....it was spectacular but have been having tex mex, burgers and now my favorite plant based.....more later....sorry to drone love and prayers to all the current patients, recovering girlies and upcoming..... 0 -
Hi Jaimeh....I hope all goes well with your tatooing. I just had mine done a couple of weeks ago and it was a breeze. Didn't even know that he had started until he asked me if I felt anything and I said oh you have already started and he laughed! Minnesota had to give me a pep talk before I went because I was nervous about it and really dreaded it and I almost backed out! I healed up with no problems at all and I am so glad that I did not chicken out because it is like getting the icing on the cake and I am so proud of the finished look. Glad I can now give pep talks!!! Thanks again to you Minnesota!!!
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Plainjane, hi - just to update, yea he did actually take muscle when he did the ld. said my breast on that side needed it, but i can honestly say i havent noticed any difference, and i had rather lose a little back muscle than tummy muscle. go back to work next week. just a couple of small spots that look a little irritated, so probably is stitches... other than that, healing great! Funny...spots are on my left breast, NOT my "bad boob" right side...lol
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Just for Ann.....do NOT cancel or edit that post. Every bit of it was meaningful, touching and well said.(unlike my long and droning ones-LOL!) I pray your liver issues are nonexistent w/ your next diagnostic. Regardless of anything I am glad you are going for it- the whole enchilada! After all, WE are the ones who have to live in our bodies the rest of our lives......I think the first time I said that it was to my local BS who wasn't 'comfortable' w/ me going to Nola. As a co-worker and I say under our breath at work when we rightfully and only occasionally feel micro-mananged- like when having to sign a form for not getting a flu shot at the designated time- (uuh because I had a cold and I'll get it from my own MD); ' Thank you, but I am in charge of me.'
Tricia and Pam I missed your bdays and probably someone else's too- please forgive me. Marcia you have a special day tommorrow? Turkey sandwiches at the beach rocks. We had veal, mussels, pasta, brushcetta and I can't remember just know it was phenomenal. And sshhh don't tell, but tasted better than the dried out bird one of my BILs always does that we missed out on this year. There was a lame attempt at a loud 'where isa da turkey' by an obnoxious waiter at another place earlier on that day but we did set him straight.-NOBODY talks to me that way. You visit me- I welcome you. God Bless America. Love to graciously and politely visit other lands. But they have made quite their own mess that they have to live w/ in the EU. Hope we learn from it here.
Nordy, A++++ for effort....if they don't grant it.....yikes what has all this come to-blending w/ above paragraphs....a theme!
I know I'm forgetting something. Loved the CNN piece but left a post on FB CRBS site- it was truly just the tip of the iceberg. Can someone or did you already..sorry
if I missed it a link to the CNN comment board?Sandy what is the bridal belt?
stay tuned I have some special pics to share from Italia....just wait til ya see my new avatar! hee hee!
Spring- you are an overachiever w/ the exercise-kidding- you are my inspiration. I can't wait to get back to organized consistent sweating and looking at my pics(which are enough to put anyone into a coma) I will be losing some poundage. Dr D did me well coming up on one yr post stage 2(OMG!) But I had put on weight before this journey started 2 yrs ago and as the info in some of the previous posts(YES! I DID read them all!)indicated lipo can't do it all-but hey! it sure did help!
OK, enough from me bona sera(sure not spelled correctly) cheers!
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Thanks Ginnie Gin! I do remember reading that and about somehting similar on another board......sort of a partial fix-makes sense esp w/ blood supply issues on a larger area heck they can't go back to the internal mammary arteries w/ every time if they needed to fill in and injected centrifuged fat lasts only so wrong...but I was getting the jist that in the EU they are sort of doing segmental lumpectomies and filling in w/ this sort of thing or something similar which my brain thinks might be a real problem if there were recurrence later but dunno I certainly do not have all the facts neither did the Lady in Florence so she DID go on and on about how "glad she was to have met me and talked to me-she kept writing down stuff I was saying". She promised me she would do all her homework, write down and ASK her questions, then find some peace w/ her decision before she let anyone cut her. Interesting I'm sure some of the thinking is different there too re: mastectomy vs lumpectomy-costs expenses to their fabulous HC system(not)-sorry if I offend or sound elitist.
OK now MUST go be responsible change the homeowner policy and change to wireless alarm system...sorry TMI!
later my dears!
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I am taking ATB's again. both my left and right scar lines and my left nipple are now red. I talked to Laura about removing the stitches but she said to leave them alone and don't wear a bra or anything tight. Jamieh, I am going to give the ATB's a few days to work and then I think I will remove the stitches, I already had a vancamycin resistant staph infection this year and ended up in the hospital and on IV ATB at home for weeks. I don't want to have to deal with that again
I quit wearing the nipple protectors on Sunday and besides the red nipple and scar lines, my left breast is going flat (yes, the big one) and the left nipple that Dr S added in his office is visibly lower than the right side. I e-mailed Celeste to ask if they have any time available before the end of the year to fix it because my insurance company changes and my out of pocket deductibles have more than doubled. We'll see. Maybe I am being impatient.
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Good Luck to all of you This Week!
I hope that all the recent Surgeries are healing good.
I am 4 weeks out today.
Was worried I had a DVT this weekend (pain in my leg for 4 days) But It seems to be ok (Doc said so too)
My Fat Graphs in my Upper pole are almost gone : (
They looked good for the 1st 2 weeks.
I have a few Stitches that are under the skin that have not disolved. I hope they do.
I have several on the outside that are still hanging on too.
Im still very sore. But doing good.
Ann I liked your Post. I hope Your Liver Biopsy is ok.
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Fat graphs, you mean fat injections???
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yes, Fat Injections.
I call them Fat Graphs. This was the 2nd time I had them done. They didnt stay either time
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Well I'm hoping mine don't stay!! LOL I'm sorry yours aren't staying, that's discouraging huh? He did them on both sides for me. My left side I had radiation done so that side every once in awhile where he did the injections burns some, and looks swollen and hard and bruised. Pretty ugly
Hoping it settles down over time, cause I thought it looked ok before! Thursday is my 2 weeks from stage 2.What all did you have done at stage 2B?
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Somebody pinch me. PJ just said I was "an overachiever in exercise" and she has run half marathons!!!! This would be like Nordy saying this to me, ha!! I can never reach the same level as you ladies!! But today I did my weight training and 15+ miles in one hour on the stationary bike at the gym while reading a book, just sayin. ha!
Ann -you know what? You can do whatever you want! I just wanted to add that I have HEARD that Dr. S told my local friend that the skin color becomes the same over time. But you sound like you have an idea of what you need already, and I bet that won't change too much. I found that typically, after a surgery, I could tell what was still bothering me. I can say that right now, when I look at things, I am very pleased and don't have that, "I need more surgery to fix this" feeling. Believe me, it is a VERY GOOD feeling! As several of us here know, our docs are very good about doing revisions. I am so happy about this personally! And what Pam said, I hope your liver biopsy is ok.
Pam, I am getting less sore, but also still have a few of those "fishing line" stitch things. I have found that at this point, if I can get ahold of one with tweezers, they often just come right out. I pull up as if to cut close to skin with scissors, and sometimes they come out! Try this!
OH!!! The other day I had to sit in my office chair most all day (this after a week off of lots of exercise). By the end of the day I had a swelling lump on the small of my back! I even showed my husband. Then I started worrying that it was cancer (I hate this part, ugh) but it went away later in the evening with movement and stretching. JUST SAYIN. I am 4.5 weeks out and still swelling!!
Good luck to the ladies coming up in early December!!! It is a nice time to be in NOLA. generally not too cold, but not hot!
Spring.
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Hi Ladies,
Tomorrow I am scheduled for consult for stage 2. Any questions I should be asking about? Also if you lost volume in breast of tissue transfer, what did they do at this stage? Thanks for any advise!
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Mamaluch - my stage 2 consult/pre-op with Dr S was short and sweet. He drew all over and said this needs shifted, this will be liop'ed etc... I'm not really one for asking questions, I trust him and I knew what I wanted adjusted. He did an amazing job! Do you have any issues or problems for Dr D to fix?
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I am definetely smaller in left breast, almost looks somewhat caved in.How is your swelling Dragonfly? Do you still have bruising? Not sure if they will add to one or take away from other. Do they give you a little lift also?
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did you have both breasts recreated at NOLA? I did, I had a bi-lateral a year ago. I don't notice much swelling, but it's hard to tell while wearing the sexy girdle
I had very little bruising to begin with, only mild bruising right around the lipo spots. They did no lifts, but did fat injections on both breasts up at the top.0 -
Spring........you are to be envied....you are SO disciplined and consistent. And I never actually did a half -the farthest I went was 10 miles. I want to aim for consistency/regularity like what you already do.
Mamluch they will fix you up and don't be afraid to ask BUT they're so good at looking at what needs done...for gosh sakes they are PLASTIC surgeons and take pride in their work. Do say what you want- more than likely he'll start marking and say "these are just suggestions"...I just told him OK! Keep going! don't worry....OMG I agonized how I could ask for extra junk in the trunk to be removed and yes a lift is almost standard I think. Don't forget dark shirt....but if you do like me because my appt time changed and no clue where my head was thye gave me a tshirt w/ logo to wear back that evening.
My scars are barely visible. The lady in Florence said she couldn't even see them. Time is your friend!
goodnight ladies!
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Springtime... Can you add me December 17 with Dr. Sullivan @ Fairway for stage 2, lipo, nipples, and right breast lift. What are the options on nipples? I'm excited to finally have this done. Thank you ladies for all the updates.
So does he fill in the hip flap divots or suck out the fat around them , or both? And I have a couple of really hard spots on the radiated side (of course). Do they remove these? How much fat can they add to the breasts to increase breast size (I know he was limited by my radiated skin)
All in all I am so happy with my results so far, and I know it is only going to get better from here. On my first trip to NOLA I was so worried. Now that I've been down their once already I'm just so much more at ease this time. All the info. everyone has shared has helped me so much. Thank you all again.
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Spring I am jealous of all of the exercising that you are doing. I will let you know about the tatoo's. My DH bought me some tatoo's like the kids wear that look awesome even if they are a little big. Now I don't want to go without something on them now after having areola's again.
Sandy~ If you need stuff photographed just send them to me. I have all the set ups for it.
Oh and as far as stitches go after 14 days they have done their job. If you can stomach it or someone around you can remove them. But that is just my opinion after having crazy reactions to stitches.
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fourboymom - I had stage 1 DIEP in September and my experience with Dr S for stage 2 was this.... He did lipo around my donor site (belly) and hips and back and gave me back the shape so I wasn't boxy like I was after stage 1. He did fat injections on each breast up above. Also, my left breast was the radiated side, and it thankfully turned out larger and wider than my right. So he took out a section on the left side of the left breast where the firm lumpy skin/tissue was. He really was able to eliminate a lot of it and I'm so happy after stage 2!!
Good luck to you
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Chimama - Glad it helped and glad you like those cherries on top of the sundae!
Ann - Thank you for your lovely post and for keeping the candle burning at bc.org when you couldn't sleep. Sometimes I'm here then, too. So hoping your liver is okay. I bet it's from the Effexor, too.
Springtime - Those tats are not going to bother you in the least! You're Iron Woman! Your posts always make me feel like a wimp.
Sandy - I want to know what a bridal belt is, too. Is it like a chastity belt?
Mamaluch - Say hi to Dr. D. for me. He's the best! (Hear that, Trish?) He will totally take care of you and will, no doubt, be doing some lipo and can fill up your left side some more. Could also do a lift.
Pam - where's the upper pole?
Lynn - So sorry to hear about your infection and that nipple! How can it be lower? Was it like that from the beginning or did it drop since then?
Jane - It's great you were able to finally make your trip to Italy - and yes, I'm sure you do resemble some of those statues now. And glad to hear our Show-and-Tell has gone international!!!!!! Great of you to take the time to talk to her.
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Okay first of all let me get this straight.... you were able to find temporary tattoos of nipples? Genious!!
Second.. I am also jealous of the exercising..you go girl!
Third..Dragonfly, Thanks for the info. I'm so glad that "boxy" me will be fixed. That is a perfect way to describe my current shape.
And just wanted to add that I had one stubborn hip drain for 9 1/2 weeks. It was still at 50cc a day when the darn thing pulled out enough to no longer be effective. It was literally sucking air. I'm wearing compression garment again to minimize risk of seroma. Seems to be working so far.
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I had one hip drain on my (LE/radiated) left side that never did get below 40-45cc's and stayed at that level for 2 weeks, at 5 weeks they told me to go ahead and pull it. I was worried this time when Dr S told me I'd have a drain most likely. I did have one, down below my belly incision, which he had opened me up to make it a little neater, and my belly button was off so he was shifting it over. Anyway, I had the one drain after stage 2, and by the time I went home it was down around 15-20! So Lara said to leave it for another day or 2 and pull it!! What a relief
Those things are crazy!0 -
Yep temporary tatoo's for a nipple. The color was WAY off and the maker is still working on them but I loved them. I gotta take baby oil to them tomorrow so I am prepared for Friday's tatoo'ing but it was a fabulous idea. If I wasn't going on Friday I would have been buying more
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I was going to ask that to Jaimieh- I did not know the 'kids' wore Nipple Tattoos. So maybe dr S wasnt joking when he said 4 nipples on ones back!
I did pull at my Stitches. They dont seem to want to pull out & it hurt alot! So I left them. That was last week- I can try again this week. The 2 under the skin I am woried will have to be dug out by a Dr & I have no PS here to help me & my PCP is not up to stuff liek that. Seriously
Minn- I think the upper pole is a Bar in NOLA. It is also the top of ones breast (higher on the chest)
Dr D added 70ccs on my left. (upper pole & Outer side) 15 ccs on my right & 30ccs to my Right Dog ear.
fourboymom- you beat me on the drains. I had one for 9 weeks & 1 day. Was still at about 80ccs. I did have to have a seroma Ass*pirated a few times : )
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You ladies are all so funny and I so wish I had an opportunity to meet you. Just when I am feeling the tiniest bit anxious, you all make me smile- so supportive and always such a bright outlook. My driver Glenn told me you ladies come for an annual reunion, when is that- I would sooo love to meet you in person.
Minnesota-I will tell Dr. D you said hello-he truly is the best! The entire staff is AMAZING and it will be sad to say goodbye(that seems so crazy)
Dragonfly-thanks for getting back to me so quickly with the info. I hope you are feeling great about your transformation!
Plainjain-thanks for your info too and I hope you had a wonderful time in Italy-I hope to go sometime. My husband and I celebrated our 25th wedding anniversary this summer and dealing with the cancer, all we could focus on was that. But, our family did throw us a surprise party.
My heartfelt prayers and hugs go out to each and every one of you. Even though I am not always typing away, I am always following your journeys. You are all such strong and kind women. I wish you the best of health and happines now and always. Thank you for all your openess. Also, New Orleans is so pretty right now- esp. some of the hotel lobbys like The Roosevelt and Le Pavillion -so pretty with all the holiday lights.
OK-I could go on and on. Wish me luck! LOVE & HUGS! Mamaluch
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