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NOLA in September?

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  • plainjane64
    plainjane64 Member Posts: 521
    edited July 2009
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    Thanks so much everyone!

    Anne W...I sort of figured...I work at Children's and am very familiar w/ Ronald McDonald House and sort of figured it was the same sort of thing except for cancer pts.  Yes, cleanliness and keeping roaches, ants etc away makes perfect sense to me too!

    Althea, thanks for that info......Just like any other large city a car is usually a bigger pain in those congested downtown areas, not to mention the parking fees......actually the possibility of sitting on Gap incisions...even tho they may be higher all the way home for a 6 or so hrs vs 1.5 hrs air doesn't really appeal.  And honestly this far out I'm sure air is cheaper than gas...A friend who wants to help out had brought up driving....she can help out I think when I get home.

    Katie did e-mail me and actually sent me itenerary for car to and fro airport/hotel in august and went ahead and booked me for Hope in sept.  I'm going to scope it out in august and Nordy I'll let you know. I hear ya re: the grocery store/drug store I invariably forget somehting I need, etc.  But Ya know as much as I love shee shee...clean w/ friendly staff is incredibly important...then again this isn't exactly on the same lines as a hotel......Honestly if possible I'd prefer to save my $ if I'm not tapped out completely for a real vacation....ya know topless sunbathing somewhere on the mediteraneanWink ................kidding...or am I? 

  • plainjane64
    plainjane64 Member Posts: 521
    edited July 2009
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    Bump

  • Springtime
    Springtime Member Posts: 3,372
    edited July 2009
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    When we stayed at the NOLA Hope Lodge, we could not get out to get our food! We flew in, were transported to Hope Lodge, and then ate a few granola bars! We didn't have a car so asked if there was any place around to eat. We walked a few blocks to a very basic greasy spoon.

    To me, you sort of *need* a car to stay there.

    Also true about parking in the French Quarter. We rented a car one day and I tihnk Homewood wanted ~20 to park, so my husband dealt with street parking and moving the car, etc.

    Jennifer, you are having your consult the day of my big surgery. You should come by and say hi to my husband Richard!! That way you can see the rooms back there. As the time get's closer, we will trade phone numbers!

    Topless. Hmmmm. Maybe after stage 2!!!!  Smile

  • Nordy
    Nordy Member Posts: 1,106
    edited July 2009
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    Thanks for the Hope Lodge information, but now I am wondering if maybe we should stay in a hotel after surgery! I will have to talk to my husband more about it, but I would assume that we could catch a cab to go to the French Quarter and to the grocery store... right?

  • plainjane64
    plainjane64 Member Posts: 521
    edited July 2009
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    Spring.......I consult in august...I thought your surg was in sept?  I'm confused...or do I just stay confused?  Yes, probably!  I'd LOVE to meet your hubby and check out the place.  I'll pm you w/ more!  hey I'm also going to PM a lady on the august thread who has her date for sept 16th...I think melanie? 

    I still have big plans to scope out the Hope lodge in 3 weeks!  my vacation wkend!

    Yes, I think topless sunbathing, or minimal flashing is in order for all of us after stage 2, we can compare scars, etc.... 

  • plainjane64
    plainjane64 Member Posts: 521
    edited July 2009
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    Bumping my surgery month group....gotta stay up high....it's only2 mos away and much to do before...stay cool everyone!

    xoxo jennifer

  • melaniew1
    melaniew1 Member Posts: 209
    edited July 2009
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    Hi Springtime - I am scheduled for DIEP at NOLA on 9/16.  I hope to meet up with some of you wonderful ladies while I am there.  I am still waiting in the info packet from NOLA, so I do not know very many details yet.  I should get the info this week.  I am excited and nervous at the same time.  Good Luck everyone!

  • Springtime
    Springtime Member Posts: 3,372
    edited July 2009
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    Jennifer, Besides BC, Alheimers must be setting in!!! LOL!!! I am a month off. Yes, My surgery is Sept 3 not Aug 3. Pooh!!!

    Hi Melanie W, I Will be flying out of NOLA on Friday 11th. When do you arrive? I am thinking after I leave :( since your surgery is the next Weds. But hopefully, you will find others here to meet up with! I did back in Dec and it was really great to know somebody else there...

    Nordy, you could take a cab to do those things from Hope Lodge! yes! We took a cab the Sunday prior to check out the big church in Jackson Square and then explore. My DH was just chopming at the bit for a car of his own... 

    Has anybody seen a general "Sept Recon" thread started yet?? I am thinking one must be about to bust out if there isn't already one!!

    Warrior, did you hear from insurance yet? Mine is apparently "making sounds" like why do we have to remove the implant... I have to get with the Center. I am sure they know what to do and are used to all this riga-ma-roll!!! I just can't stand this insurance stuff. ugh!!  Did you find out your hospital yet?

    Spring. 

  • Warrior517
    Warrior517 Member Posts: 240
    edited July 2009
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    Spring, I just found out Massey's office JUST put the insurance packet out and hope to have a response in 15 days. I was under the impression that it was sent out already. Oh Well..all that matters is we are taking steps forward!  I will be at St Charles Surgical Hospital! I plan on flyin in on Sept 2..surgery day after you, right? I still havent decided where to stay. It may depend on flights..right now its 500 RT each from Detroit to New Orleans for the direct flights, which is what I want..just keep checking the airlines constantly. I did receive my scripts for my pre op tests. I need to start making appts for that shortly.Another question for you. I know you have a lot of knowledge on Tamoxifen, too. Do you know if its okay to take w/supplements? I have also read something that it is not good for Her2 positive gals ( I am BOTH)...any input, as always, is appreciated!! Talk to u soon!

  • SandyinSoCal
    SandyinSoCal Member Posts: 559
    edited July 2009
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    My aunt stayed with me at Hope Lodge and she rented a car. She went grocery shopping when necessary, or left to get take out from a nearby restaurant.  I cannot recall the name of it, but it was probably the "greasy spoon" place that Springtime mentioned.  You can take a street car into the city, but it's about a one mile walk to catch it.   There are drugstores on St. Charles accessible via the street cars, or you can ride them all the way to Canal Street, cross the street and you are in the French Quarter.  I took some groceries in my suitcase to tide us over for our first evening and the next morning's breakfast, and then my aunt did a bit of shopping.  You could take one trip to a grocery store by cab and buy most, if not all, of what you'll need for your stay. 

    Something I have always meant to do while in the hospital and have forgotten every single time I've gone to NOLA is to make up a sign with my screen names from this site and the FORCE board, and post it on my hospital room door to welcome anyone with whom I've communicated to come in and visit. 

  • melaniew1
    melaniew1 Member Posts: 209
    edited July 2009
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    MOMSDAUGHTER - THIS IS SUCH A COOL IDEA!!!!!!!

    SPRINGTIME - You are correct, I arrive on 9/14.  Sorry to miss you but I will be so thinking about you!  Best of luck to you. 

    Can either of you tell me a few details about stage 1: the hospital stay, how long?  Drains- did you come home w. them?  If so who removed them and when?  recovery in the hotel after surgery?  Did you get around ok?  Stay in mostly, go out any?  Did you feel like getting out any?

  • plainjane64
    plainjane64 Member Posts: 521
    edited July 2009
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    Gosh darn Spring!  I was looking forwarsd to a peek and some company!  Sure you guys can't change your dates?  KIDDING!  Heck I'll be checking in to see how all goes!

  • plainjane64
    plainjane64 Member Posts: 521
    edited July 2009
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    Hey Spring...Hate to tell ya ....you ARE the sept recon thread!!!!!!  I've officailly appointed you!   You started this!....But I'll give ya a hand!  lemme know........too tired right this minute to figure all the details...but girlfriend we'll figue it out!  Come on AUTUMN!  from 100 plus humidity!

    more later!

    xoxo

    jennifer

  • SandyinSoCal
    SandyinSoCal Member Posts: 559
    edited July 2009
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    Melanie, I wasn't smart enough to have stage I in NOLA.  From what I have heard, it's four nights in the hospital.  You will leave the hospital with drains, but might be lucky enough to at least have the breast drains removed by your doctor by the time you travel home.  The rest, you pull yourself when your nurse gives you permission.  I have done it and it did not hurt at all.  My husband clipped the single thread, and I pulled it out as I walked around, and really could not feel it.  I was talking with Liz last month about drains and she said they are leaving them in even longer than before, and that was already far longer than my first surgeon did, (which is why I had the complication that led me to NOLA finally).   You'll be walking around in the hospital before going back to your hotel, so you will be able to get out for very short walks right away.  One lady I know who had stage I there found it wise to borrow a wheelchair to take outside for walks in case you tire and don't feel up to walking back to your hotel.  Plus she said it was great for steadying herself on the very uneven sidewalks in the French Quarter.   Homewood Suites has a wheelchair you can borrow, and I would think that Hope Lodge would as well.

  • Springtime
    Springtime Member Posts: 3,372
    edited July 2009
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    Warrior, we are just 1 day apart. I arrive on Sept 1 and surgery Sept 3. You arrive on Sept 2 and surgery Sept 4, right? So we are at the same hospital! Same procedure, and one day apart! This is what I was hoping for when I started this... Glad to have "found" you. I hope other Sept NOLA ladies find buddies too! 

    Trisha, you will overlap with Warrior and me too, the next week! We'll make sure we swap cell phones! 

    We are staying at the Monteleone in the French Quarter prior to surgery, and then the Hilton Homewood Suites after.  Just FYI...

    Melanie, I've heard stage 1 DIEP or GAP at NOLA is 3 nights in hospital. Since Warrior and are having stacked DIEP/Lumbar (both belly and butt) our stay is 4 nights and many many drains, that I am not looking forward to!!! But it will all be worht it in the end...!!!

    Jennifer - We are the Sept recon thread???? What about all those other ladies who are not doing DIEP/GAP or going to NOLA?? :)  If you see on more "general" one start, let me know...

    Spring / Beverly

  • Springtime
    Springtime Member Posts: 3,372
    edited July 2009
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    Oh forgot to mention, my insurance approval is apparently in the works. CIGNA is asking NOLA for justification why they need to remove my implant. I am hoping Dr. D's office deals with this all the time and knows what to do. They said it was not a "denial" just a request for more information. Hope it all goes well....

  • melaniew1
    melaniew1 Member Posts: 209
    edited July 2009
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    Springtime, Nordy, Plainjane, Anybody else scheduled for NOLA  -  I guess I do not know exactly what I am having, I sent my photos in requesting the DIEP and the response was that I was a candidate.  I have not had an office consult as yet.  My hope is this and I have far less tissue on the backside than the belly area. 

    What is the process as far as communication after you have scheduled the surgery?  I have not had any more communication since last week when I scheduled the dates with Celeste.

  • Nordy
    Nordy Member Posts: 1,106
    edited July 2009
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    To me... communication after scheduling seems to be a waiting game... I have emailed questions and have not heard back, but I figure I am still more than a month out, so haven't worried about that too much yet. I understand that people who are having surgery sooner would be a higher priority than  I am. However, it kind of makes me a bit anxious...

  • AnneW
    AnneW Member Posts: 612
    edited July 2009
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    Nordy,

    Who's not responding to your inquiries--the Center's staff or your surgeon's clinical coordinator? You shouldn't be left hanging with questions or feeling that you are not a priority. Guidance and reassurance every little step of the way are vital with an undertaking as big as this. A little compassion and updating (even if there's nothing to report) go a long, long way to making this a good experience.

    Anne

  • Springtime
    Springtime Member Posts: 3,372
    edited July 2009
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    Melanie, I generally have better luck with calls (and sometimes I follow up a call with an email). he he.

    Are you having both sides done, or just one? When are you hoping to go? Have you already had mastectomy, or just finishing treatment? 

  • Nordy
    Nordy Member Posts: 1,106
    edited July 2009
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    Thanks for the tips Spring!

  • plainjane64
    plainjane64 Member Posts: 521
    edited July 2009
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    Ok, girls....Here's my experience so far.  I did get date sorted out and last week I e-mailed Liz(educator asking for meetings/matches w/ alumni several years out who have returned to athletic lifestyle.....told her anyone near me or there...since I go for consult august 3rd).  I heard back from her today.  For me...being this far out and having other stuff going on I'm ok if it takes a bit for them to get back to me.  When I've WANTED/NEEDED an answer I've held on the phone or phoned and e-mailed and that hasn't been too often...then again...I did truly start in May expecting delays or setbacks...sort of pathetic, but somewhat of a reality. Again, w/ no current active CA and still 5 mos post rads when I have to be 6 mos for surg....so......I'm ok-sheesh I'm 2 mos out!  They still met what I asked for...I was the one who said from the get go I'd like a target date of mid to late sept for surgery and asked up front for the consult in late july early august......

  • plainjane64
    plainjane64 Member Posts: 521
    edited July 2009
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    oops!  Spring......Just not sure there's an official sept thread thereforeI appointed this one!  guess I made an executive decision...but if someone else wants to start an official one, please do so!  Spring going to PM you re: your mastect......some questions...you had done at NOLA by Dr. Lagarde?  more to come to you!  cheers!

  • melaniew1
    melaniew1 Member Posts: 209
    edited July 2009
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    Spring - I am having both sides done.   I had neo adjuvant chemo (finished Jun 08) bilateral mx July 08 and radiation (finished Oct 08).  I,ve been weighing my options since that time.  Was told in Jun 08 by a really pompous surgeon that I would not be worth his effort for a DIEP because I would only be a B cup.  I just heard NO and mourned for a really long while.  Scheduled the LAT Flap and could not go thru with it.  Then I replayed the conversation from the first PS and said to myself: "B, whats wrong with B, thats what I was before!" Then got serious about research and about doing what was right for me and found NOLA.  We only get one shot, best to choose wisely and not settle.  So here I am, counting the days for this to take place and to start really putting my life back together again. I am looking forward to sharing this journey with you all compassionate and caring and so very wise ladies!

  • Springtime
    Springtime Member Posts: 3,372
    edited July 2009
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    Melanie, You did good, girl! You are going to be so pleased. I can't WAIT to hear what you have to say about your new Ta Ta's!!! Around here, I was hearing a lot about the back/LAT flap, but I really really really did not want to lose my muscle back there! Nor my Ab one for that matter! I am very active and do a lot of Yoga. My husband was so agienst the muscle things. Anyway. It SO PERSONAL and such a journey. We all have to find what puts us "at peace". It is a hard road to travel!!! 

    And what is wrong with a B??? Anyway, if somebody else told you a B, don't be surprised if you get bigger than that at NOLA. THat's what I've sort of gathered by listening to other ladies...

    Speaking of muscles, I as noticing last night at YOGA that I can't do a decent down dog with my pecks over these implants. Well, I can do it, but it is not the same. I can't wait for my peck muscles to be back on my chest. !!!!!!!

    PlainJane (I forget your real name, if I was a better creator of this thread I would REMEMBER!!! I blame chemo brain!!! LOL). I had Dr. DellaCroce (pronounced DellaCrowe). He was great. I have only heard great things also about Dr. Sullivan. He seems very nice too. I was doing my walking  laps on the hospital floor and Dr. S came up to me and we chatted. I introduced myself, etc. They are all really nice in NOLA if you ask me. Must be the Southern infuence! I can say that, as a NJ girl who now lives in NC!! :)

    Also, I have the same experiece. When I call NOLA and I wait, and they say someone will get back to me, they do. I am used to being persistent and assertive though!!! So I don't really mind. :)

    If anybody sees another Sept Recon thread let me know! LOL!!! I know there must be a slew of expander/implant ladies out there!!! 

    Spring / Beverly

  • Soccermom4force
    Soccermom4force Member Posts: 311
    edited July 2009
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    Another reason for no food in the room is to minimize the need to use pesticides in the rooms as most there are having chemo and or some sort of treatment.

    I have stayed at Hope Lodge (NOLA)  3 times and found everyone there simply wonderful! The rooms are immaculate and comfortable (simple).

      Please keep in mind that this is a FREE service by the ACS  but donations of  goods (a *wish* list is posted at the desk) and or cash is always appreciated!

    FYI, I am stacked DIEP alumni (2 years Aug)

    Marcia

  • Springtime
    Springtime Member Posts: 3,372
    edited July 2009
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    And Marcia, might I say, you are looking pretty FAB in your Bakini if that is you girl!!!!

    I am really wondering if I will be able to wear a 2 piece after all this ab fat removing surgery!!!!! Any good stories appreciated!!! (Have not seen a 2 piece since before the kids were born!!)

    Spring / Beverly

  • Warrior517
    Warrior517 Member Posts: 240
    edited July 2009
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    Hi Girls!

    Still waiting to confirm insurance approval but I did go ahead and book my flight since I found a good rate. I arrive Sept 2nd and depart on the 15th. Bev..I haven't decided where to stay just yet but its leaning towards the Homewood Suites,too! (We get to fight over the wheelchair!) lol

    Once I hear from the insurance end of it, I will let you all know. For those of you that have done Stage 1 in NOLA, will I be able to fly home solo?? I think Momsdaughter did fly solo, remind me..lol  Also, will NOLA do two pick ups for airport..one for me and one for DH. We are coming in from two different states. My hubby is temporarily living out of state due to work, so when I get home, will I need help?? I have three kids ages 8 11 and 14. Great ages, but will I be able to make lunches etc? when can I go back to work? I know some of these questions can be answered by the RN's but I want to hear it from those that have walked the walk! Thanks!!

    PS How do I put my pic up so you all can reconize me? lol

  • plainjane64
    plainjane64 Member Posts: 521
    edited July 2009
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    Hey sept girls!  My real name is JENNIFER...but I naswer to almost anything...Jane is my middle name. 

    Soccermom...If you're one of the bikini girls you are lookin good!  Spring we WILL wear a bathing suit and do yoga, etc, etc and look fabulous!

    Hey warrior........I have not walked the walk, but asked Liz many VERY specific questions in regards to how soon post op for this, that and the other......I can't answer about when you can make your kids lunches.......BUT.....I was basically told that I should be back to what I was doing before by 6 wks postop...I found that VERY good news...yet still, because I'm extra cautious...AND that IS best case scenario, no complications, etc, etc.....I asked repeatedly "So I can go back to work, lift monitors, hold down 300 lb pts, as they emerge from anesthesia, pick up adult fainting parents, do CPR, work as a nurse doing direct pt care....and she said yes...... I had already decided last fall when I thought I was doing implants a job change was in order because all it would take is one kick to rupture one of those implants.  It was awesome to know I don't have to make those sorts of changes right now...unless I just wanted to...and honestly once all this is done I may be ready for something new...not exactly sure what but, fortunately there is plenty of work exactly where I am for now......It's all good!

    Spring, your brain is JUST fine!  Did you have your mastect at NOLA?  Dr. D is doing my recon as well, but the breast surgeon is Dr. Lagarde...she does the mastect while the plastics people are harvesting and getting our new breasts ready to transfer.

    So it was actually sort of cool tonight...I work w/ pediatric pts but had a pt tonight, (teenage girl)  after her surgery for a pedicled flap to replace an area on her chest, above the breast that was badly burned and scarred...she basically had similar to an LD flap...and it looked great...BUT...I think I knew more about flaps than anyone...the anesthesiologist told me it was a free flap and I made him clarify telling him a free flap is very different than a pedicled flap.  He got all bent out of shape and I totally called him on it.......O well his focus is meds and airway.......the surgeon is one of the plastics (local) that I'm NOT comfortable w/ having his hand in my chest...........point of this story...I think...KNOW I'm So ok going to someplace that is ALL breasts, all the time and is very specialized in our care.........sorry to drone on...but I'm just giving you guys a reality check...all this stuff truly is VERY specialized, all the more important for the caretakers to know this/OUR stuff...................

    ok, I'm done!

    jennifer

  • Nordy
    Nordy Member Posts: 1,106
    edited July 2009
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    Hi Warrior - I have not yet been to NOLA  but I do have some answers to your questions. First off, they will definitely make 2 trips to the airport to pick up you and then your hubby. I asked the same thing as I have to drop my kids off at the in-laws and my husband has to work the day that I am flying, so he flies in the next day - they said NO PROBLEM! Now, for the flying home solo... they told me NO WAY. I told them I wanted to take a separate flight from my husband so that if something happened to our plane, one of us would still be around for our kids. Katie laughed, but was very understanding, yet pretty firm that I had to have someone fly home with me. Which I think makes total sense... if something were to happen to you during flight, you would have someone there that could relay all that was going on. Now, this is for stage 1... I don't know about stage 2 and beyond. It is important to remember that as per momsdaughter, she did not go to NOLA for stage 1 - she had that done elsewhere... but went to NOLA to have them fix her up! I am not sure about the other things, but since those were questions that I asked in making my trip  reservations, I knew about those ones. Good luck!