Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...
Webinar: Corrective Breast Reconstruction: Getting the Results You Want Join us July 9, 2024 at 6pm ET. Register here.

NOLA in September?

Options
13567908

Comments

  • SandyinSoCal
    SandyinSoCal Member Posts: 559
    edited July 2009
    Options

    Yes, Nordy is correct and I did not have stage I in NOLA.  Also,  I never flew back home unaccompanied.   I flew to NOLA last November alone and I was in the hospital until my aunt from Oklahoma joined me, and then she was on the plane with me back to L.A.  It's only been this last few months that we have begun to leave our three children home alone and my husband usually stayed with them, so I went for my surgeries in NOLA with a friend, my aunt, or one of my kids. 

     Warrior, you should be able to make sandwiches for your kids after you return home, as long as you are not lifting anything heavy and if your refrigerator is large, you'll probably need to pull the door open with both hands.

  • Springtime
    Springtime Member Posts: 3,372
    edited July 2009
    Options

    I still can't get over Marcia in that BIKINI on the last page!!!

    Dag!!! I never even thought of this, but maybe.....   :)

    Gotta look at the glass half full, I say!!! :)

  • Warrior517
    Warrior517 Member Posts: 240
    edited July 2009
    Options

    Thanks girls....I misunderstood the solo flight thing. Can I still chalk it up to chemobrain? lol

    We need Marcia to be our mascot! lol  Do we need to buy pjs / sweats bigger than normal to accomodate all those drains? (doing a stacked)  Does everyone buy spanx, too?? Just trying to get ideas of what to pack so I start shopping (like I need an excuse) lol

    Also, how do I put my pic on so you guys can see who you are talking with? lol

  • plainjane64
    plainjane64 Member Posts: 521
    edited July 2009
    Options

    ok, hold on to your seats.  I have my pre-op stuff AND a stage 2 date.  St. Charles hospital sept 22 stage I and stage 2 dec 10th.......... voila!  How will I ever contain myself?  Hard not to talk about it......Honestly I have to stop myself at work and w/ family because I know there is life outside of  breasts, BC, recon, perforator flaps.  Thank goodness I can come here and blab all I want about it to all my brest friends!

  • Nordy
    Nordy Member Posts: 1,106
    edited July 2009
    Options

    Jennifer - I am going to try and stalk you and get my stage 2 set the same week... LOL

     MARCIA - when I read your post the other day I was not logged in so did not get to see your pic! YOU are looking so rocking hot in that bikini! Like Spring said... maybe someday... You are what we should all aspire to!

  • Warrior517
    Warrior517 Member Posts: 240
    edited July 2009
    Options

    I just got off the phone w/my Dad. He is a great father and has been there for me every step of the way, but THIS time he just doesn't understand my need to go to NOLA. He feels this is too cutting edge and not "tried and true". I was 39 at diagnosis and explained to him that I don't want muscles cut and I have a lifetime left still!  I asked him to check the websites..etc  How does one handle those people that don't seem to "understand" why we would do this.......I know its because he loves me and doesnt want to see me in more pain. I have been through a lot this past year....

  • plainjane64
    plainjane64 Member Posts: 521
    edited July 2009
    Options

    Nordy,

    Please do!  Actually it would be a ton of fun to do this w/ someone else...and I'm really sad I'll have to miss work the 2wks including christmas...breaks my heart almost as much as it will to cancel the mammo and breast MRI in Oct-but still have to do in sept 2 wks b/4.  Seriously if you do try to fly thru DFW.  So are you at St. Charles?  bet you are since you are In network......snob.......kidding.

    Warrior......I am sorry...your Dad just is still your daddy.  My parents are both gone but my siblings are all 10-20 yrs older than me...I love them but even now.....It's almost like I play dumb sometimes because there is just this.... they are always supposed to be older wiser, know more........the reality for me is I'm an adult now and I'm doing what's best for me and brings ME the most peace.  They knew about my diagnosis, lumpect/rads last fall and very much thought bilat mastect and recon was "TOO extreme".  When I decided to move forward w/ prophlactic bilat and recon I decided I'm not telling them.... until I'm healed. I truly dealt w/ this w/ the help of a counselor.  I have plenty of friends and nurse/physician co-workers who will be helping out.  I'm actually grateful it all worked out this way as I HATE the thought of them being nosy, bugging me, staring at my chest and thinking they are entitled to check out my body parts and express their approval, disappoval, etc.  At this point I'm still really vulnerable and this is just the easiest way for me to handle it.It's so awesome we can pick our friends...sometimes it's too bad we can't pick our families.  It's my body, I'm the one who has to live in it.  OK< sorry!

  • Warrior517
    Warrior517 Member Posts: 240
    edited July 2009
    Options

    Plainjane....Thank you so much for sharing!! I find your words so close to home..lol  I know there are people out there think we are crazy but, as I told my dad, until you walk a mile in my shoes or have to look in MY mirror..don't judge.  I understand people won't agree with me, but I just want their support. My DH always says, its your body, your choice.  One of my favorite things my DH hubby said was once I made the decision for a dbl mastectomy..I told him that he has always been a boob man and this will be hard...he stopped me and said "I am not a boobman, I am a Kathy man!"  A bit off the topic, but just thought I would share that and hope you smiled!!

    Thanks for your advice....I know Dad will come around (hesitantly lol) but I will not let my excitement and passion for this surgery be altered or discouraged by others!! NOLA Girls Unite! lol

  • plainjane64
    plainjane64 Member Posts: 521
    edited July 2009
    Options

    Warrior, your DH sounds like a keeper!  Ugg... families, intentions are usually good...but...when your Dad sees how  confident, comfortable, and HAPPY you are w/ all this, esp AFTER  then he'll probably come around.  So just share your excitement here and w/ people who are UP w/ all of it....this is going to work for you.  Eeks, I got a hair of disapproval from my BS this week because I'm not going to a big academic teaching institiution w/ a big name but ultimately she said I'm making the right decision, she said she'd do anything to help(and I'll be following w/ her for 5 yrs or whatever).... but it was a buzzkill for a while there.  She'll just have to get over it and I will set her straight if she does a buzzkill again.

  • Springtime
    Springtime Member Posts: 3,372
    edited July 2009
    Options

    This is a test posting from my phone while in a traffic jam on I-95!!

    Jennifer, my stage 2 is December 4, I think we *might* overlap a little!!

    I will post mmore when at a real computer about my Dad and also what I went through trying to get all my local doctors comfortable with NOLA....I think all this is a normal part of the process.... But a PAIN!!!

    Love love love, Spring

  • plainjane64
    plainjane64 Member Posts: 521
    edited July 2009
    Options

    Sounds great!

    Hey Spring...so you were texting while driving?  kidding.....Oh man I work until 9 pm 12 hrs now to avoid the 530 rush hour. We're supposed to have rail in the next couple yrs and I bought my current home location about 2 yrs ago in prep for that.........I am excited!  I have to be in NO dec 8th...I may come in on the wkend tho and then yep, bet we'd overlap!

  • melaniew1
    melaniew1 Member Posts: 209
    edited July 2009
    Options

    PlainJane64 -  regarding getting a little grief from your BS about not going to a large teaching institution, let me tell you what my GP told me when I was researching all this. 

     I had decided that NOLA was the best place for me, but the distance was a little off putting to me and my second choice was JH, which is a little closer to home.  When I call my GP for a referral he asked me why I wanted go to JH.  I went thru my logic w him.  Then he said, I want to be sure you are NOT choosing JH just because of the name.  He said that surgeons that are talented practice all over, in every location imaginable.  They may practice in what seems like a strange location, but it may be the place they call home.  The "surgeon" that is talented and revered (sp?) is the one that attracks other talented surgeons who want to train under them.  So the institution is not what really matters, but the surgeon.  Then he said, if you think NOLA is the best place for you, why would you choose your second option?  You have one shot at this, why would you choose what you think is 2nd best?  So I got off the phone and called NOLA the next day to talk about it.  And the rest is history.  I think there is a lot of truth to what my GP told me.  Feeling confident in your decision is the first big hurdle, I think.  As long as you are confident about this, ROLL ON!  You should not have to look back and it does not matter what others think, cause until they have walked in our shoes, they will NEVER understand, NEVER!  We just have to over look the downers and move past it.  Hugs, Melanie

  • SandyinSoCal
    SandyinSoCal Member Posts: 559
    edited July 2009
    Options

    Just explain that today's society is very mobile and it's so easy to travel to the best doctors that why would we choose not to?   Of course, we have to overcome this in our own minds first, but seriously, I can be in New Orleans at 5:00 p.m. local time, and back in Los Angeles at 7:00 local time.  It's so easy, and during early recovery you spend a bunch of time sitting in a chair anyway.  It's no big deal to travel to do this!

  • plainjane64
    plainjane64 Member Posts: 521
    edited July 2009
    Options

    Sandy, Melanie,

    I agree w/ both of you 100%.  I am tough to sell and come from the whole teaching hospital environment(20 yrs worth)....I believe my BS is just hung up in that because she's a professor at UTSW and did her fellowship at MD Anderson....She means well, she listens to me-literally frightened me that she remembered a totally random detail I told her on the phone once...Actually I love that!  And I will be following w/ her.  She came around..... and if she has issues, that's exactly what they are.... her issues.... she's not the only game in town for f/u. Some of these  MD's have huge egos...I work w/ them every day...It's just SOOO different now being on the other side.  Hopefully I'm a better nurse now.

    Her comfort zone is big name teaching hospitals.....good for her....she's not the one doing this tho! I am!....and the irony of all this?  The PS she works w/-previous MD anderson guy too and I really do like him personally(but he doesn't have enough DIEP's behind him/doesn't do Gap- and the photos...nevermind that)...HE is the one who provided the Kathy Steligo Book w/ his new pt information packet-last Oct.  I think Kathy Steligo is the reason I decided NOT to do TE's-implant recon....and I based it on the studies she put in one chapter about satisfaction of women w/ implants vs autologus tissue......I didn't realize until I just went back to the book that Dr. D was (I think?) her Dr.  She did a good job and was very objective in her writing.  But -That in addition to all the happy customers, the way I've been treated and the entire ALL breast, ALL the time are huge to me.

    I absolutely agree I can get to NO in 1.5 hrs.  Easy, breezy and not a problem w/ SW and AA based here.

  • Warrior517
    Warrior517 Member Posts: 240
    edited July 2009
    Options

    Thank you girls for the support and advice!! If anyone can understand, its my sisters here!

    I have a question for those of you that did the second stage. My first stage in NOLA is Sept 2nd..and since I will be paying all my deductibles, I thought I would try to squeeze Stage 2 in December. Is this realistic? (especially closer to holidays) I

     Once again, thanks girls for your input! (Bev..eyes on the road) lol

  • plainjane64
    plainjane64 Member Posts: 521
    edited July 2009
    Options

    Yes, Beverly, Melanie, Nordy and I all are saying the same thing sister!  just call Celeste.

  • Nordy
    Nordy Member Posts: 1,106
    edited July 2009
    Options

    Hi All! I have been watching this post the last two days and now that I finally have a minute, thought I would chime in...

    First of all: People not understanding... NO, they don't. Even one of my PT's told me, "It is so much better not to have reconstruction, you can just wear a bigger prosthetic when you want to! You can be 2 different people." Ummmm, hello? Is that supposed to make me feel better. My oncologist initially didn't want me to reconstruct again (after failed implants) because it is more difficult to monitor the chest wall, HOWEVER, he did say, "But I am not you, and you have to do what makes you feel good." Then I have my family - none of whom will disagree w/me because they don't want the backlash (I tend to be a bit outspoken and DIRECT... I am not passive aggressive, so when I think something I try to pick my words so that they do not sound harsh, but then just say it)... now my mother-in-law on the other hand, who also will not address this to me directly, but tells my husband instead - is the one that ticks me off the most. On one hand, I can see others' points of view, especially when it is someone who cares greatly for us. They only see more surgery, and what if it something goes wrong or the flap fails? They do not look in the mirror every day... or have difficulty finding clothes to fit properly that hide the prosthetics... Funny, someone on another board told me just to layer my clothes w/a tank top so that I could wear a V=neck... bottom line, is I have to put a crew neck tank under a v-neck... ummm, the neckline is still a crew neck. Hello. 

    Second: Ummm, this is a continuation from above - it took filling out a questionaire from one of my PS consults (I shopped around) to realize what a poor self image I have. It asked me to rate how I felt about my body in different scenarios. Whoa. It made me take a good hard look at the facts and that is that I do not feel comfortable in my own skin the way I am now. And I think it affects my every day life, from being a bit more on edge and angry, to not wanting my husband to hug me without somekind of material against my flat chest. This may be too much information, but the one night that he finally got me to go skin to skin w/him, I just started crying. It is such a loss and unless you have been there, you don't understand. And no, reconstruction is not for everyone, but it IS for me. 

    Third (are you all getting sick of my diatribe yet?) : Let me just tell you about the Breast Center and New Orleans and the opinions of some other PS's. First of all, I went to a major teaching institution on one of the coasts for a consult. Since I am about to say something not so great, I am going to leave them nameless. I was told that I could not have DIEP because I did not have enough fat for it, but that I could have SGAP or the higher "love handle" flaps and that I could even have a D cup w/these. I was given the name of a patient that I could contact to hear more about this procedure. She emailed me and told me her boobs were great but that she had "deformities" from the donor site. I asked what kind of deformities (you know some people might just be picky) and she said HUGE deformities. That it looked like 2 shark bites out of her buttocks. I proceded to email the PS and ask if that was the norm or if things had changed since he did her surgery. He said, "No, it is a trade off." The patient said that they never went back and did any kind of revisions of her donor site - which is totally the opposite of NOLA. At that point, I told him, cancel my surgery date. I am not trading one thing I hate for another. Oh... but back to the whole point of this. When I was at the facility having my consult, this particular PS stated to me, "If I was sending my mother for SGAP surgery, and I wasn't going to be doing it, the only other place I would send her is to Drs. Dellacroce and Sullivan." 

    Now for the second plug for NOLA: My personal PS here in town does not do free flaps, but she removed my implant for me last year (she did not place it, so the failure is not her doing...). I saw her last month when I had my records faxed to NOLA. I told her where I had decided to go and she said, "I had another patient go there. They took her flaps from her buttocks and even gave her a tummy tuck. She is so happy w/her breasts and her body." This plastic surgeon has never met these docs, but has seen their work, and in this agreed to see me when I get home if there happen to be any issues that come up w/healing, etc.  SO... there you have it. My regular breast surgeon wasn't quite as on board w/the NOLA thing, but that is only because they recently hired a PS in their office and he is "going to start doing DIEP this summer." I said, "So you want me to be his guinea pig?" LOL... she said he has done them... but uhhhh... until he has done 400-500, I will pass! 

    So, there you have it! I cannot guarantee all of our outcomes... there is always risk of complications... but seriously, do you think people from all over the world would go out of their way to go to New Orleans for breast surgery if they weren't any good?

    Warrior -  Maybe relay some of this to your dad... I don't know the exact words you can tell him... sometimes mine are caustic, so I won't give you advice there! LOL  

    Okay, let's all band together- we are going to have rocking hot tatas....

  • Warrior517
    Warrior517 Member Posts: 240
    edited July 2009
    Options

    Thank you Nordy sooo much for your honesty and your words of wisdom!! Right now I am lopsided after having a failed implant. I don't like what I see in the mirror. I am doing this for me. It is the final part of my healing, as I like to say.(Give or take stage 2 and 3) lol I have yet to tell my PS yet because I want to confirm the insurance, just in case. Also, I don't think he will be happy since he just hired a microsurgeon fresh out of his fellowship. His success rate was 90% and at first, I thought that was decent until I did my research and realized I can have 99% in NOLA! 

     I am so grateful to have you all here to listen, to advise and to care. Thanks girls!

  • plainjane64
    plainjane64 Member Posts: 521
    edited July 2009
    Options
    Ditto on the listening and caring.  Warrior, your pics are adorable!  Nordy, you go right ahead. And no I haven't been there.  I am so happy you are doing this..... and.....I am buying you a V neck something in Dec and you will NOT be wearing a crew neck underneath....Ya know whenever  you stalk me.   Girls, please know I have a sarcastic wit and I hope I didn't offendFoot in mouth or say something stupid.  If so please accept my apology and dish it right back out.
  • SandyinSoCal
    SandyinSoCal Member Posts: 559
    edited July 2009
    Options

    Warrior, it's actually closer to 100% than 99% in NOLA.  Wink

    As far as teaching hospitals go,  Dr. DellaCroce made a very good point at the FORCE conference about them.  You may end up with a student or a  resident doing part of your surgery.  This was half of my concern when I was considering DIEP at UCLA.  I was warned about having my surgery there during July, because that was when the newbies begin their year.   I didn't have the luxury of waiting because I had active cancer and needed surgery ASAP.  

  • plainjane64
    plainjane64 Member Posts: 521
    edited July 2009
    Options

    Sandy.................VERY true...I was just reiterating that very thing to someone else.....those residents/interns/fellows are supposed to be supervised by attending and have them jump in if needed, in some situations it is a positive thing to have more than one doc caring for you BUT in THIS situation for ME- not gonna do it.  Ugg July....can I tell you how many phone calls to clarify I've made in the last 2 wks?

  • Nordy
    Nordy Member Posts: 1,106
    edited July 2009
    Options

    Jennifer - it is so great to know that I am not the only one... I keep thinking I am going to drive them nuts at the Breast Center... but I limit my phone calls to one per week or less... But as it gets closer, I don't know if I will be able to contain myself to do that! Oh, BTW, I am laying over in Dallas - but at Love Field, I think, but only for 20 minutes on the way to NOLA. We will have to catch up in Dec. if I can get scheduled!

    Oh, and I 100% agree w/Sandy. At one of the PS that I checked out, they utilize students... what they do in the surgery depends on what year they are in as far as training...  Sorry, it doesn't make me feel too secure...

  • Trishia
    Trishia Member Posts: 361
    edited July 2009
    Options

    Hi all,

    Sorry for the absence.  I fly into NOLA on 9/9, surgery on 9/11 and fly out 9/14.  Not sure if I am stying at a hotel or at the Hope Lodge.  Would love to see as many of our beautiful ladies as possible. 

  • Warrior517
    Warrior517 Member Posts: 240
    edited July 2009
    Options

    Trishia...you have surgery after me and get to leave before I do!! lol  Which procedure are you getting again??? I am looking at the NOLA Special..stacked gap/diep. I arrive 9/2..surgery on 9/4 (day after Springtime!) and leave on the 15th.

    NOLA called today with an estimate (yet still awaiting insurance approval) The amount exceeded the amount we can afford right now. I live in Michigan w/my three kids and hubby lives out of state because he cant find a job here so we are paying for TWO households right now. The lady from NOLA was very nice but basically asked what can we pay...I don't even know right now..arrggh

     For those of you NOLA/Massey grads...how much did you end up spending out of pocket for your surgeries? If that's personal...just PM me!! (not travel...medically)  Thanks girls!!

  • plainjane64
    plainjane64 Member Posts: 521
    edited July 2009
    Options

    Oh Nordy.......Nola answers my questions...I don't have to bug them- sorry!  I was talking about at work...can't you read my mind?  kidding....July is just.....OK, not trying to toot my own horn here but....I do a lot of teaching training nurses and it is so important nurses in teaching hospitals know and are familiar w/ protocols/decision trees, etc... because literally we police a LOT of stuff and escalate to attendings w/o hesitation-they depend on us-esp in July...Just reality and part of my work life.  Sorry!  Ok, back to being a patient now!...ugg I am lousy at that!

    Warrior I'll pm you w/ what Lanita told me and what I'm hoping to do. 

  • Springtime
    Springtime Member Posts: 3,372
    edited July 2009
    Options

    Hi All!

    Safely settled in NJ and off I-95!! 

    Warrior, I have my Stage 1 Sept 3 (I am also doing the stacked DIEP/lumbar) and Dr. D said I could have my Stage 2 about 10-12 weeks later. Celeste suggested 12 weeks later since what we're having is a bigger deal. So YES you can fit both in this calendar year, which is EXACTLY what I am doing so that I don't have to pay the "out of pocket maximum" again in 2010! I did it in 2009 for chemo and all that initial diagnosis stuff, this year I've already paid it for RADS!!! I want to get these surgeries in this year, it just makes sense.

    Plus, I really want to get the most perfect ta-ta's I can (and I know I am going to the right place for that) and get on with my life! Maybe in Bikini's!! lol....

    I had a lot of local "push back" about going to New Orleans. I was told to go to the local teaching hospital where they have one guy that can do DIEP. Why was I goint to another state when somebody locally could do the same surgery? Well, I went and the surgeon told me the NOLA guys were the best in the world. I already had my surgery scheduled there and basically went for the conslult so that all my doctors and my husband, poor dear, would feel better. After  the appt, I had no doubt in my mind (they could not do skin or nipple sparing, could not do immediate recon, etc etc). Anyway. DH and I were then on the exact same page. i just got steely inside and told my local doctors I had it scheduled and I was going to NOLA. After i came back, and my ONC an RAD onc saw the results (and I just had temporary implants to get me through RADS) they were all believers. MY ONC even had another lady contact me about going to NOLA as she was not happy with the local options. She went to NOLA for GAP and is having her phase 2 later this month! So they're now even referring people there!

    I agree with what Sandy / MOM'sDaughter said - the first hurdle is just to get comfortable yourself, and believe it is right for you.  You will be in the best of hands!

    So many of us are overlapping in Sept! Woot! I will be there Sept 1 - 11.  

    Spring/ Beverly

  • Trishia
    Trishia Member Posts: 361
    edited July 2009
    Options

    Warrior~ I am having my Stage 2 done!  I was there for 10 days when I did Stage 1.  I had the DIEP flap.  Dr. Sullivan was my primary and my breasts are gorgeous!  I have pics in the picture forum and will email anyone else who wants to see them.  Just PM me.

    I'm having issues with my insurance company based on the contract they signed and what they SAID they would pay and what they actually paid.  I do know the amount is different based on what each insurance company is willing to pay.  Really sit down with your budget and then tell them how much you can realistically afford to pay them each month.  They want to make it work for you. 

  • Springtime
    Springtime Member Posts: 3,372
    edited July 2009
    Options

    Hello all you gorgeous women!!!

    I have tried to summarize who is having what surgery and when, above in the opening / intro statement of this thread. This way we can see who is "near" us in terms of surgery dates.

    I think I have most of the dates and names correct, and tried to put the date ranges when I could find them, what hospital, and what hotel if it was stated.

    Please let me know if I have anything incorrect or if there is more information you'd like me to add! 

    Nordy, I know you are Aug but added you as well b/c I was trying to figure out when you'd be there!!! :)

    Jennifer, I also added your Aug 3 consult to keep myself straight!!! LOL...

    Spring / Beverly

  • melaniew1
    melaniew1 Member Posts: 209
    edited July 2009
    Options

    Spring - I am in NOLA Sept 14 thru 24,  St Charles Surgical, Stage 2 Dec 15 -  20 not made hotel arrangements yet.  Does anyone know if my husband can stay with me at Hope Lodge?

  • melaniew1
    melaniew1 Member Posts: 209
    edited July 2009
    Options

    Hi Eveyone, I got my orders today and had my medical records sent over to Dr. D.  Guess it is REAL now.  I can not believe I am brave enough to go thru with this,  I have never done ANYTHING just for me before,  Feels weird,   Take care everyone!