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NOLA in September?

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Comments

  • Dragonfly1976
    Dragonfly1976 Member Posts: 1,552
    edited October 2010

    Thanks Gin, my friend FINALLY got her stage 2 scheduled. Sadly it's not when I'll be there but she's ok with the date so I'm happy!!

  • foobs
    foobs Member Posts: 21
    edited October 2010

    Another question about clothes:  Do you just wear hospital gowns while in the hospital?  I don't want to take too much

    Dragonfly!  We'll be at Hope Lodge at the same time.  I'm there Nov 14 thru the 17th.

    Elaine Your surgery is just one day before mine.

     Journey, I'm SGAP too but one week after you.  I'll be listening for anything helpful from you.  Good luck to you.

    Jaimieh thanks for the undies advice.  I'm thinking I probably won't even bother and I'll just wear yoga pants and big shirts too. What kind of yoga pants did you buy?  I

  • SandyinSoCal
    SandyinSoCal Member Posts: 559
    edited October 2010

    Spring, I had no idea there would be 16 of us.  There are also a couple of local NOLA ladies I've invited and I have no idea if you are including them in your count.  I agree that we need a reservation!  I'm sorry for not being in touch much lately.  I'm under a lot of stress right now and really need a break, even if I have to have surgery to get away for a few days! 

  • Jaimieh
    Jaimieh Member Posts: 925
    edited October 2010

    Reebox has some nice yoga pants that are so soft that I have been living in them and I don't need them.  They look really nice and wash nice also. 

  • Mauicarol
    Mauicarol Member Posts: 69
    edited October 2010

    Oh, duh. LOL.  I'm a little slow these days, sorry.

  • Mauicarol
    Mauicarol Member Posts: 69
    edited October 2010

    Dragonfly:  Duh, now I get it.  Sorry, I'm a little slow these days.

  • Dragonfly1976
    Dragonfly1976 Member Posts: 1,552
    edited October 2010

    Foobs, I'll have to come say hi when I get there. We fly in on the 16th!!

  • K9Kim
    K9Kim Member Posts: 47
    edited October 2010

    ~*Ladies* ~ *Ladies* ~ *Ladies*~

    Geez... I feel so lost... I have only been away from here for a day or so and I am pages behind!! I get the notifications sent to my phone, so I stay up to date on any new posts, but can't respond from my phone, so it's so frustrating. So many things I wanted to comment on, but I am too far behind now, so I'll speak of my current news. 

    I got confirmation on my flight today! Yahoo! Flying in 10/25 on United, arriving at 6:50pm. Gonna be a long day, I have to connect somewhere, so I'll be in the air most of the day.  But so grateful for Mercy Medical and the service they provide for us, I couldn't have done this trip otherwise. 

    About the Yoga pants... I feel a little silly that I don't know exactly what they are? I am guessing they are like leggings? Yes? No? Are they loose around hips or snug? I would like to go out and get a pair or two tomorrow, just want to be sure I get the right ones. "Jaimieh" you had mentioned Reebok makes some and you really like those, so maybe I will head to the Reebok Outlet tomorrow and ask them. Would like to find cheapy ones though if possible, money is tight as many of you may know when you are out on disabilty. 

    Anyway Girls... can't wait to meet you all in the next few weeks... I'll be there for almost a month, so I'm lucky that I will get the opportunity to meet so many of you as you come and go. 

    Marcia Marcia Marcia... So great to get to talk with you today!!! I am on FORCE now taking the survey! :-)

  • Springtime
    Springtime Member Posts: 3,372
    edited October 2010

    Minn, your post cracked me up. I have it right at the top then, 5PM for drinks and 7 for dinner. 

    Sandy, yeah, I didn't write all the names down. but I counted spouses and kids, and I got to 16. Work insane for me too. ugh. I know exactly what you mean!!!!

    Hopefully when everyone sends Minn their "info" to swap phone numbers, they will let her know if they are coming to dinner! I bet everyone will come and we'll be a big, happy group!

    :) 

  • Mauicarol
    Mauicarol Member Posts: 69
    edited October 2010

    Pam: I am so glad you got some relief.  I was going to suggest you try a nasal rinse, but it seems that is what you have done :)

    RE: Tatoos.  Since I have recently learned that many of us are in SW FL. I want to suggest a tatoo artist called Manuela. She has a studio in North Fort Myers, FL.  I have seen her work & it is amazing. My oncologist's nurse had her tatoos done by Manuela & she showed them to me.  I stopped short of reaching out to feel the texture (LOL) & instead asked her to stand sideways. The 3-D nipple tatoos are so dimensional, you have to touch them or look at them from the side to know they aren't real. PM me & I will give you her number

  • Mauicarol
    Mauicarol Member Posts: 69
    edited October 2010

    Anyone hear from Liz?

  • K9Kim
    K9Kim Member Posts: 47
    edited October 2010

    Mauicarol, when Marcia and I spoke today, I asked her if she knew how Liz was, knowing they're friends. She said she was going to call her husband tomorrow to check on her. So I'm sure she's update us tomorrow after she speaks with him. :-)

    We're thinking about you ~LIZ~ !!! 

  • just4ann
    just4ann Member Posts: 103
    edited October 2010

    Hey ladies.  Just remembered something I have been meaning to post but keep forgetting.  Right before my flight home after my Stage 1, I called the airline to make arrangements for wheel chair assistance at the airport.  I also was given preferential seating for the flight home.  I didn't know if this was common knowledge or not but just wanted to share just in case.

    I am so excited for everyone who is going to be meeting up in NOLA. It sounds like lots of fun.  

    Hope everyone is healing well.  And good luck to everyone with upcoming surgery.  Not that luck has anything to do with it.  We all just happen to have the best surgeons in the world.  So I guess what I should say is congratulations to everyone with upcoming surgery!  I will be so glad to have my Stage 2 behind me.  I can hardly wait! 

  • K9Kim
    K9Kim Member Posts: 47
    edited October 2010

    2tzus, ahhh... I know exactly what yoga pants are now... THANK YOU!! That's what they call those kind of pants. Lol Saw some today actually. And thanks for the additional info on where to find cheapies. Now that I know what to look for I can hit those places for them. I actually went to Goodwill today to get my men's button down shirts... I figured I will never wear them again, so why spend any more money on them than I have to. I was actually quite pleased with myself for thinking of it. heehee But the work out pants, I'll go for new ones. I can and will wear those again.

    QUESTION... I had read about the black dominatrix suit with the pink flower on the front of it from some of the ladies a few pages ago... there was some question as to whether they still give them to the ladies to wear after stage 1 now or not? I think it sounds great?! Thoughts? Can anyone comment that's maybe had a recent surgery this month? I want one!!! Lol 

  • K9Kim
    K9Kim Member Posts: 47
    edited October 2010

    Oh ya... also wondered if anyone that's been recently to NOLA if they have the individual bulb holders again now or not?

  • K9Kim
    K9Kim Member Posts: 47
    edited October 2010

    I thought of something else... big surprise... Lol

    I found out yesterday that Dr. Stolier (from what I've read, he's pretty amazing, feel pretty lucky to have him as part of my team) is going to be my surgical oncologist, in addition to of course the artist, Dr. D. Anyone else have this combination of docs? And is it typically only 2 docs for S-GAP, I thought I've read that most women have mentioned 3 doctors names... Just curious... 

  • just4ann
    just4ann Member Posts: 103
    edited October 2010

    Kim, I had Stage 1 on the 22nd of September and I was given the famous DOM outfit.  I was told to wear it for two weeks after the last drain was removed.  But then I know Dragonfly had her surgery a week or so before me and she didn't have the DOM outfit.  We both had the same surgeon -- Dr Sullivan. I don't know why we were given different instructions.  

  • Minnesota
    Minnesota Member Posts: 604
    edited October 2010

    K9Kim - When I had my stage 1 SGAP at the end of March, I requested Dr. Stolier as my breast surgeon. He used to team with Drs. D and S before the new hospital was built, when they did the surgeries at Omega. Now they have a different breast surgeon they usually use at the new hospital. Dr. Stolier is still happy to come over to do surgery with our guys, when asked - which is what I did. He's been doing nipple-sparing surgeries forever and was the first or one of the first. I'd just heard a lot about him, ever since I had my first recon back in '06, so knew I'd feel really comfortable with him as part of my team. So you have the surgical oncologist and then you have the two reconstruction surgeons. So in addition to Dr. D., you'll probably have either Dr. Sullivan or Dr. Trehan. So, 3 surgeons! Don't you feel important?! You should!  Re: the dominatrix. I believe it's still standard issue with S-GAPS, since they have to keep the pressure on your derriere. So I believe you will be getting one - I did, in March. Drain holders - yeah, they gave me this pouch thing with pockets. I didn't like it as much as the elastic belt with individual pockets you slid on the belt - that's what I had in '06. Would be really easy to fashion the contraption, once you know how big the bulbs are. It was just a long strip of wide elastic with velcro in a few places so you could adjust it for size. Then there were four individual pockets with loop things on the upper back of the pocket that were wide enough to slip over the elastic. You could slide them wherever you wanted on the belt and eliminate them as you eliminated the drains.

    Foobs - hospital gowns in the hospital and nice, soft, lavish, terry cloth robes.

  • Dragonfly1976
    Dragonfly1976 Member Posts: 1,552
    edited October 2010

    I had the drain holder, the little blue pouch that has an elastic band that buttons around your waist like a belt. I also had NO dom outfit after stage 1, like Ann said. I was given a big 3 stage velcro binder thing to wear once my drains were out. However I only wore it for a couple days, it seemed to make my LE issues worse.

  • treerock
    treerock Member Posts: 11
    edited October 2010

    Will be having stage 2 @ Nola Nov.17th 2010 arriving 15th late afternoon pre-op on 16th-surgery on the 17th, won't be going home til' the 23rd staying @ Hope Lodge. Would like to meet Dragonfly1976 & AnneW, and or chat or message- prior if possible. :) 

  • SandyinSoCal
    SandyinSoCal Member Posts: 559
    edited October 2010

    I wanted to respond to the question about the co-pay.  When I choose my surgeon here in L.A., it was with the understanding that I would be paying about $17-18,000 as my share of his fee.  I could have gone to UCLA and paid $1500, but I really thought (based upon recommendations) that I was getting a better surgeon.  My family encouraged me to spend the money and go with the doctor I wanted.  He did a crappy job with my stage I and I ended up with an avoidable complication and a not very compassionate surgeon.  Actually, he was downright rude and made cruel remarks, plus he basically abandoned me as a patient.   I headed to NOLA for help.   I've had several revision surgeries now and between copays and travel, I know I've spent over $25,000.  I once said that I would have traded my car for the results I now have--they're that much better than I would have ended up with.  I think the reconstruction we are gifted with in NOLA is priceless and worth some sacrifice.   Yes, the Center will work with you if you absolutely cannot afford your copay, but consider what it's really worth to you to receive the best reconstruction in the world.  Not everyone is lucky enough to go to NOLA.

  • Dragonfly1976
    Dragonfly1976 Member Posts: 1,552
    edited October 2010

    Treerock - I will PM you my contact info, so glad to hear of someone else having stage 2 same time as me.

    Having a little strange experience lately. My hands, and forearms are achy etc...I thought maybe it was because I've been using my arms and hands to push myself up all the time since surgery instead of my stomach muscles. But not sure... so I've been trying to get back to sitting up with my stomach and such. Then I thought maybe cause I'm sitting on my rear so much, since being laid off and recovering and spending lots of time on the laptop with my wrists and hands at that odd angle? Almost like restless leg syndrom but hands/arms. Better when I'm up walking around than laying down or sitting. Of course stupid me, googled it tonight, and the first thing I read was that someone had arm pain, did a test and their cancer was everywhere. So here it is 1am and I am wide awake with total fear. I'm such a worrier :( 

  • melindastn
    melindastn Member Posts: 98
    edited October 2010

    Jeskachi,

    My natural nipples were also very light.  My PS here in TN gave me some really sad looking ones so I decided that the lighter they were the less noticeable his work was.  I am still considering just leaving them light after my stage 2.  Dr. D said he could tweak them to look better and actually they do already after stage 1. 

    Melinda

  • AnneW
    AnneW Member Posts: 612
    edited October 2010

    dragonfly, are your arms swollen? My first thought is LE. But most likely just an overuse sort of thing.

    Anne

  • Dragonfly1976
    Dragonfly1976 Member Posts: 1,552
    edited October 2010

    My left arm is slightly, but I do have mild LE there. My right arm is worse but it's in my hands and fingers too. It's worse when I sit and use the computer (great huh, LOL) or try to open a can of soup or something. I think it's overuse, but reading that totally made me panic :( I mean I just went to all the pre-op testing and everything else how could it be everywhere ya know? Dang disease!

    So in stage 2, do you get nipples? I am really on the fence with this part. 

  • Mauicarol
    Mauicarol Member Posts: 69
    edited October 2010

    K9Kim:  My stage 2 was two weeks ago today. I was given the blue pouch for drains & a DOM outfit to wear for 2 weeks.  My stage 1 (in June) was a DIEP flap & I was sent home with a large binder that wraps around the waist, no DOM girdle.

  • treerock
    treerock Member Posts: 11
    edited October 2010

    Look forward talking with you. And your

     My arns do get tired- I contributed it to several things, before stage 1 surgery I was use to lifting heavy things-mostly a 25lb grandbaby on a reg. basis. Then all of a sudden no lifting more than 10 lbs for 6 weeks. Spending way to much time laying in bed using a little laptop, when usually I don't even sit down most of the day. So some of your achyness may be due to that. It's crazy how fast our muscles lose strength. My legs have been very achy lately. However, the previous poster mentioned swelling-that is a very good point I would call them about it. I know how bad it can be to do the look up stuff on google-when you can't sleep, and then it makes it worse.... I really try not to do that anymore, it really mess's with my sleep-and menopause does enough of that!  But I know it's hard not to when your worried about things.

  • Dragonfly1976
    Dragonfly1976 Member Posts: 1,552
    edited October 2010

    Hmm I hadn't thought about the swelling on both sides. Does LE go to both sides, or is it just swelling as a result of surgery?

  • Soccermom4force
    Soccermom4force Member Posts: 311
    edited October 2010

    This just in from Liz (Xfitgirl) in NOLA...

    ". My throat is sore from intubation so don't want to talk too much. Other than that I am feeling good. I am out of bed and have eaten twice. So far, so good :)"

    Marcia

  • Minnesota
    Minnesota Member Posts: 604
    edited October 2010

    And Liz spilled crumbs down her new cleavage!!!!!!

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