NOLA in September?
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Hi Amy. I'm sorry to hear how much you've had to go through already. Honestly, NOLA is a place of healing for many of us - both emotionally and physcially. Plus, I'm sure there are a lot of women here that will tell you that they've now been able to enjoy their perfect breasts for more than one week -- and I am sure you will someday be one of them!
I think I may be one of the most recent stage 1 women on the board. I am 6 1/2 weeks out from my hip flap surgery. As everyone has said, this is will be one of the best medical and hospital experiences you will ever have. Hard to believe right now but honestly, the caring and expertise combined is unsurpassed. I know you don't want to jinx your date in May but if we are there at the same time (I'll be there from May 16 - 24th for stage 2) we can meet up.
Good luck to you and welcome.
Kathryn
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Enjoying - while surgery is never a holiday, going to NOLA has a restorative component to it. They are very patient and respectful of you as a person, as you as a couple if your dh comes. They know you've been on a rough journey, and it is a high priority to them that you are well cared for. They genuinely care about that. When/if there is a situation which comes up, they are problem solvers with tons of experience and with all kinds of calm solutions. It's unique. Their calm allows you to be calm. Their experience allows you to feel confident that you are in good hands and just to relax. Certainly on this BC journey, the words "relax" and "calm" are not what we usually experience.
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Back on the "waiting game" again. Turns out my fat necrosis areas were NOT--at least not typical ones. The right side was a lot of scar tissue caught up in the flap and skin. That was released. The left one, that was hard as concrete, did not have what Marga called the "usual smell or look" of necrosis. It was a mass, maybe 4 cm? Frozen section during surgery was negative, but we're awaitng final pathology. It's in the spot where my first cancer was. But really, I don't think that's what it is. It consolidated over time rather than grew. I should find out by the end of the week. Sheesh. This wasn't on my radar at all, and now I get to ride the worr-go-round again!
I apparently also had a drug reaction to the Zosyn (antibiotic.) Well, I'm not convinced since I wasn't awake to see it myself. And I know that medical folks can err on the side of caution. I had to dig this information out with Marga. I remember in recovery the nurse saying they were giving me Benadryl and a breathing treatment (albuterol.) Seems my arm got red while the antibiotic was infusing. They didn't take any chances and hit me up with Benadryl a couple of times. So, I presume I'm allergic to Penacillin now, dammit, but I don't know for sure. Best not to try it again unless I'm in a hospital setting...
Other than that, I had Tim pull one drain this morning--it was sucking against my skin above the breast and really felt like it was going to poke through. Output was at 10cc, so I felt safe doing that. The other will come out tonight. And all the tegaderm dressings can be pulled from my hiney. My husband has become a very skilled assistant! (Oh, and the drain didn't hurt a bit coming out!)
In all, no volume was removed from my breasts, and no fat was transferred. They were both lifted to fill the space that was removed. So they're uber-perky right now, but should fall into a little more of a tear-drop shape. I am a bit concerned that my new scars, especially on the side where the skin island was removed, extends to my cleavage. It was that or dog-ears. I'll take the scar...
All for now!
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Thank you all so much for your warm welcome. I really appreciate it! I hope I "enjoy" NOLA as much as "y'all"! Actually, my husband was kind of a hard sell on traveling for the surgery until he heard where it would be done. He loves New Orleans and tries to go every year or two for either Jazz Fest or French Quarter Fest. So I think he has plans to sneak out and hear some music while we are down there. I only hope he doesn't try to drag the docs out to the bars with him!!
Springtime - Yes, I am having implants removed because . . . A. I hate them. B. I am starting to develop more and more pain on the one side, as opposed to the everyday discomfort I have had for the past four years. C. I hate them. D. I think I have a partial collapse of the tissue underneath one of them, so I have a huge indentation, and it is very unattractive - don't even know if I can wear a normal bathing suit at this point. So, in spite of all my fears and nerves about the sugery, I will be glad to see them go. I imagine there have been more than a few women who have passed through NOLA who have had implants removed and their reconstruction re-constructed. Would love to hear if that applies to any of you ladies.
KathrynLA - 6 1/2 weeks out! Congrats! I hope you are feeling well. I will have to scroll back through the posts to check your progress, but would you say you are starting to feel "normal", less tired, better able to move around at this point? I am hoping that by 8 weeks I am feeling up to going up north for a reunion and to visit family. Then, I imagine just about the time I really start feeling good again, it will be time for part 2! Oh, I think there is a good chance that our dates may overlap, so when everything is finalized for me, I would love to make a plan to meet up!
kcshreve - What you said about them helping you to feel calm, and relax. I can believe that, just from my phone calls to the center. Everyone there seems to have plenty of time to answer my questions, and I feel like they just want to take care of me and make this as easy as it can possibly be.
AnneW - Sorry to hear you are playing the waiting game. That part sucks. I'll be hoping and praying for good results from your path report. Sounds like that's whats going to happen, based on the frozen section. So, fingers crossed and all that. I can relate to the allergy stuff, by the way - I have tons of allergies - I imagine they will not be happy about that. They will have to be hitting me up with alot of that Benadryl, for sure.
So, other than who had implants, tonight the question of the evening for me is - how did everyone out there get to NOLA? Lots of drivers, or mostly flyers? I am giving thought to both. I live about a 13 hour drive away, I think, and have a friend living just about half way, so could spend a night there in each direction. But not sure how I feel about two 6 1/2 hour days in the car. On the other hand, not sure how it must feel to be getting on a plane, making connections, etc. just a week out, still dragging along the drains, etc.
Hope you all are having a good evening!
Amy
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I enjoyed NOLA every time I was there. And I had 4 trips and then tattoos! And besides the French Quarter, you are treated like a queen. It would be really hard for me to have any surgery anywhere else, I swear, once you've been there. It's the way it should be. Unlike these huge hospitals where you are treated like a number. It's like you are a celebrity getting special treatment!! Spa like atmosphere. Very good for healing I feel. Only to be topped by having 6 of us there all at the same time! That was like a college dorm atmosphere! Best. Time. Ever!!!
Amy - I had implants and I felt so good when they were removed. I remember waking up from surgery and moving myself around in the bed without the pain and ick under my pec muscles. Oh it is so sweet!! I can't wait until you feel it!! I got my range of motion back too over time (I am into Yoga, so this is important!) You will be so pleased. I can do all sort of pec work with weights in the gym without the issues with implants. It was one of the best decisions I ever made. I feel like my body, and all my parts, are now "back" to normal!! I know implants work well for some women - but not me. My body HATES foreign objects! ((The port, the drains, the implants!))
Anne, Hmmm. Getting smaller sounds like something other than the big C, I agree with you there. But I know you will be relieved to get the news that all is well. Just as well to get that out of you anyway, don't you think?? Try to keep your mind busy! And HORAY FOR DRAIN FREE!!!! I knew those would be coming out fast! Whoot!
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Anne - I don't see how that could possibly be cancerous - it's not breast tissue. I can't remember if you have tummy or gluteal fat there. But neither is a place where cancer hangs out, is it?
Amy - I had to fly. It wasn't bad at all, especially with a straight thru flight. I think a lot depends on how comfortable you are. You'll be very tired and want to sleep. Also, you'll want to get up and move around so you don't get stiff. So driving, I think you would need to take frequent breaks. If it were me, I think I'd do whatever would get me home the fastest. If you fly and have a quick connection, have them provide a wheelchair for you.
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Amy, not sure where you're from but I flew as driving would have taken me a couple days I'm sure. I live in Oregon, took a flight and had 1 connecting flight. I'd fly though on a normal basis over drive any time. For stage 1 we got stuck coming in to Chicago and I was so sore and we were there for 4 1/2 hours in the airport in my pj's, drains and all, but I made it home! For stage 2 we had pretty uneventful flights, I can't remember where our layover was, I think Houston? The 2nd leg of the flight to Oregon was 4 hours and I was in a middle seat, not comfy! But I agree with Minnesota, in a car it would be several stops to get home, but I also think you could do it in 2 hour stretches or so then get out walk around go potty and go again. It's hard to do that on a full flight in a middle seat.
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Amy - welcome! I had expanders removed a year before I was re-reconstructed! I hated them. They were hard, they were painful... and I was always limited to what I could do at the gym. You will LOVE the new you! The NOLA docs do a fabulous job! Also - I flew - it would have taken me at least 3 or 4 days to get there! In your case, I think it would depend on if I could get a direct flight. If I could - it would be a no brainer for me and flying would be the way I would go!
Anne---WTH? I have got my fingers crossed, and I am with Spring on this one - getting smaller sure doesn't sound like a cancer issue. Please keep us posted.
I am looking to update my timtam pics soon... can't find my camera! (Dragon... no, not the POC Fuji, but my good Canon!) I know it is around here somewhere!
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Hi Amy, I also had implants that I hated. So uncomfortable -at times painful, and always aware of their presence under my pecs. Totally gave up on working out my upper body. Like Springtime I woke up from my NOLA SGap surgery and immediately felt relief. At over two months out I started working out my whole body again. So much better!
As for travel I flew but it was a short flight. No matter if you fly or drive I am sure you will want to plan on walking about every hour or so. It is doable as so many can attest.
Good luck! You have made a great decision to go to NOLA!0 -
Anne - I don't know much about what you're going through but hoping that all turns out well. When will you get some news?
Amy - that's great you may be there at the same time. I met a couple of other women while there for stage 1 and you definitely form a bond. In fact, you form a bond with anyone that has had the same experience. NOLA (as you can tell) is very special and we all feel priveledged to have gotten their special care and expertise. As for travel - I'd want to get home asap. I didn't like riding in the car post surgery (but I had hip flaps and maybe that is different) - the bumps bothered me and I felt very vulnerable in the passenger seat. That's just me and maybe it was that the people driving (my sister who lives in NYC and hasn't driven in 20 years or my 86 year old mother) didn't instill a great deal of confidence!
I really am feeling great. I was in good physical shape before the surgery (stepped up my exercise a month before) and seemed to have a quick recovery. I had a lot of range of motion very quickly (don't know if it's that I had immediate reconstruction or not) and yesterday I went back to my full workout. Not intense but a half hour on the treadmill, stretches, weights and it felt great. Could have started a week earlier but decided to take it easy. I was off the pain pills within 2 weeks of surgery and therefore could have started driving (but waited another week).
I think a trip up north at 8 weeks is very doable. I would ask some of the others what they think but I could easily take a trip now. In fact, hard to believe but I'm actually starting to look forward to stage 2. When I made the dates I never thought I'd be ready for another go round with surgery, but here I am making reservations and imagining where I'm going to eat when I go.
We're all so excited for you! And your husband will be so glad you chose NOLA!
Kathryn
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Hi Ladies: if I am staying at the Hope Lodge in April--should I get a rental car or is the limo service pretty reliable?? I just dont want me or my husband to get stuck anywhere--without a car or transportation. Thanks, heather
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Hey, all my path report was benign. No matter how much you rationalize that a mass should NOT be cancer, it's always niggling in the brain now...
Thanks for the support!
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Anne, fantastic news! I'm so happy for you!
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AnneW,
So glad that you have good news! Heal quickly!
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Anne, Yay!!! We knew it, but also agree, good to know for sure!
Heather, the limo service is very reliable and will get you to and from all your officail appointments. However, they won't take you anywhere else, like out to a restaurant. There is nothing much around Hope Lodge, at least when we went over 2 years ago. So you will either need to taxi or rental car if you want to get around. You may not need to go anywhere except to get food. When we stayed there, we got a cab that took us to Jackson Square and back - so that we could enjoy the French Quarter. You do not need to worry about the limo's for appts. They set all that up for you.
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Heather, ditto what Springtime said. Also Katie said we could use the car service to go to the french quarter then take the street car back to our appt for example. So one morning we got the car service from hope lodge to the french quarter did some site seeing, then rode the street car to the center for my pre-op appt and go the car service back to the hope lodge. Plus we've always had good luck getting a ride from someone at the hope lodge to the grocery store.
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Wonderful Anne! So glad.
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Anne - WOOOOOOOOOOOOOOOOOHOOOOOOOOOOOOOOOOOOOOO!!!
Laughlines! Hi!!!
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Do you have trouble with insurance approval for NOLA? How do you negotiate with the insurance company?
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I had no trouble at all with insurance at NOLA. They will get your insurance info, run it and go from there.
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Hi Nordy!
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I am headed to NOLA for my consult with Dr. D on Monday...What do I need to ask??
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Hi Ro, that's great! I always tried to write a list of my questions or concerns and have it with me during my appointments. More often than not, Dr. D would offer to do something extra and unexpected and when I didn't have a list, I would completely forget things I had wanted to ask about. I'd say, ask about anything you are still concerned with!
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Yay Anne!
Welcome, Ro ..... Yes, lists! I took one in each time I met with Dr. D, who you will love by the way, and it seemed like he answered most of the things on my list without my asking.
If you forget something, you can always ask in here. Between all of us, we've experienced it all I think
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Congrats Ro, you're on the way! Let us know how it turns out. I also made list of questions that I would check before he left, to make sure all my questions were answered.
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I think I'm the only one that had no questions to ask the fabulous Dr S! I asked a lot on here before I went, and he explained everything so well, and I was that comfortable with everything. Good luck, you're going to love it there!
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They docs do have a knack for telling you everything you need/want to know. A list helps, just in case.
In the meantime, there are several threads besides this one that have DIEP info, what you wish you'd known, etc. I'll bet you've found them already!
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Hi Spring! Would you mind adding the date for the Komen Race for the Cure in NOLA/our 2011 reunion to the calendar above, so it remains where we will all see it? October 22 !!
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Hurray for Oct. 22!!!
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Hello Ro!
I used to live in Ocean Springs,MS and went to NOLA for my recon in 2007 (from Jackson where we moved after Katrina). As everyone here has stated the Docs are wonderful about answering your questions and after the appt. you can post us as well!
Congrats for choosing the Center, WE just know you will be happy!
Hurray indeed for Oct. 22nd! We need to start a scholarship fund for NOLA alum to attend?!
Warmly,Marcia
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