NOLA in September?
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Springtime, she had wanted the dates listed, and I told her I posted here to let everyone know. Thanks for adding her dates
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I'm still new to the whole cancer thing (diagnosed 4 months ago) and getting up to speed with some of the research. I do know that cancer patients seem to be lacking in Vitamin D....but what other vitamins are people taking and how much of them? I haven't had bloodwork done yet so I don't know my vitamin D levels but have added 4000IUs.
Spring - I'm originally from Westfield (closer to Tenafly) but know the area you are from - beautiful down there. My father also went to Rutgers - probably in the 1930s!
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Kaitsmom I was in Coventry, London and Manchester. Loved Coventry and London but did not spend enough time in Manchester to form an opinion.
About the HOpe Lodge, it is set up just like a hotel room with the exception of the food/drinks in the room. But on the positive side it makes you get out of bed and move around.
NOLA in August can be very hot. I went last year a few days early to tour it but the heat got the best of me. You would walk a little bit and then need to go indoors for the A/C.
K9Kim should be in NOLA the same time as I am. I visited her when I was there in October for vacation.
Hope all is well with everyone, Hugs and Prayers to all
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Jeskachi - I lived in New Orleans for 8 years and I've been having the same thoughts. It is hot and humid and relatively uncomfortable outside in August. But there is an indoor mall and the Riverwalk downtown which I figure will be good for walking. The nights will be better if you want to get out in the French Quarter then. My surgery is just a bit before yours and Dr. Massey is my assistant surgeon. I met with her in October and loved her!
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I was in NOLA last August and was worried because I hate the heat! It was ok though since I had stage one and spent lots of time inside. When I did go out I just tried to avoid the hottest part of the day. The good thing about that time is the great hotel deals. I spent a night in Waldorf Astoria before my surgery because the price was SO reduced.
Thinking of everyone with upcoming surgeries:)
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Springtime and Kathryn... I currently live by your old haunts... I live just north of Princeton...used to live in Millburn.
And I also lived in NOLA for 5 years and yes, August is REALLY humid and disgusting... I would just move from one AC to the next... My Stage 1 is in July and I know it will be brutal. Definitely not wearing a wig down there then.
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sallym, I have never been to Manchester or Coventry. I have spent lots of time in London, Wimbledon, and Stamford (a small very old market village notrth of London where Pride and Prejudice was filmed). I have also been to the Northeast - Northumberland and Newcastle, the Cotswolds and Bath, Cambridge and Oxford, the Lakes District, and have driven through the Yorkshire Dales. Oh gosh, sorry. Once I get talking about England, I can't stop. I love it there, and there is so much more I want to see. . .
I like your point about getting out of the room to eat if I stay at Hope Lodge. Knowing me, if I feel lousy or lazy, I am likely to just sit around a hotel room, when really it would do me good to get out. That said, being close to the Quarter may prompt me to get outside and walk more when there is something to see. Realistically, did many of you do much walking, even light walking, after your Stage 1s? Just made my plane reservations today, and have a room held at Hope Lodge for the 2 nights prior to surgery, and then at Homewood Suites afterwards. But I still may change that to stay at Hope Lodge.
Yes, Spring, lets make a plan for when you get back in town. That would be great, thanks! And I WILL have a million questions, I'm sure! But the coffee or tea will be on me!!
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kaitsmom - I definitely did a lot of walking post surgey. We stayed with the mother of someone we know and she lived near Tulane. By day 4 or 5 post-surgery I probably walked 2 miles. The thing with me was if I was moving I was fine...if I stopped I was ready to collapse. I had hip flaps so I don't know if that made a difference in my ability to walk so much. Also, I'll be staying in the French Quarter when we get there (and that's about when you'll be leaving.)
bdavis- lots of fond childhood memories of Millburn...and most of them involve shopping! Also the Papermill Playhouse. It was a beautiful community when I was growing up.
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Guess what I have!!!! I have three NOLA pendants! They are solid sterling silver and a bit larger than those that the Center gave out, but the design is exactly the same. Unfortunately silver is sky-high right now, so they were $42 each, but if any of you are interested just let me know.
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Vit D - It took me almost 6 months at 10,000IU/day to get my levels up to 60. I was down to about 18 to start. Now I'm reading that Vit K is a good pairing for Vit D. They need each other. I'm glad they are uncovering all this, but it seems it never ends as to what we "need" to be taking.
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A couple of years ago, my onc told me, "no vitamin supplements, except D". Now I am on D, B-12, iron with some Vit C to help with that, One a Day Womens, calcium and biotin. There does seem to be no end to it . . .
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Sandy I would LOVE LOVE LOVE a pendant from NOLA please!
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NOLA gives out pendants? No way! That's great. I'm hoping that you get it after stage 2! (Please don't tell me you got yours after stage 1 or that they stopped doing it!)
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I didn't get one after stage 2, so I don't know what the scoop is. Some ladies got a pendant or a pin I think?
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A pendant would be cool, but I will be happy just to have some boobs!
Ok, joking aside, what can I realistically expect my boobs will look like a week or so after the surgery? I have implants now - had mx 4 years ago - and never had nipples done, so I won't be shocked that there are no nipples or anything. And I have plenty of scars due to prior breast reduction a month before the mx. So for you "vets", what was it like?
And what about my tummy? Will it be flat or will there be swelling? I am having DIEP and possibly hips as well, but hopefully there is enough tummy fat to make 2 small breasts. I know I won't want any pants that rest on the incision, but what about sweats that sit at my natural waist, which for me is definitely a ways above my belly button? Going below the incision would worry me about "pants on the ground, pants on the ground". Got a 30% coupon from Kohl's that expires today, so I may as well take advantage if I need to buy a couple of things.
What is typical for drains in a delayed reconstruction? I know I will have some in the tummy, and I assume in the breasts?
Hope everyone is having a nice Saturday. Super windy here in Raleigh, but the temps are rising and I think spring is finally here. The yellow pine pollen is anyway!
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kaitsmom - My boobs were great after the DIEP, I went a year with nothing after my bi-lateral MX so I was THRILLED! They were full and a C+ or maybe even a D? It was so awesome to wake up with boobs again. Funny cause I brought a v neck tank top to wear from the center to the hope lodge after surgery, and all of a sudden it was too small, and too short with boobs
The cool thing is they look real, they look like boobs right away. The swelling goes down over time as well as in your tummy. I didn't really notice a lot of pain as there aren't a lot of nerves or feeling in my boobs after the MX and the DIEP. My stomach incision was tolerable and tight. They have the great pain pump, and the Q ball thing which places a numbing med all along your stomach incision pretty much the whole time you're in the center. I know a couple ladies still had it when they went back to the hotel/hope lodge and had it taken out at post-op. For me I really really was hunched over after my MX surgery, so I focused on standing straight up immediately after my DIEP when walking although slow but I did it and it made my lower back hurt less.
The pants I lived in after surgery and still on the weekends, wearing a pair now as a matter of fact are just your basic lounge pants. I love them though because they don't have elastic really around the waist, and they have pockets you could use for drains.
I had 4 drains, 2 in each breasts, and 2 in the hips. The breast ones were removed before I left the center at discharge. The hip ones were in for about 5-6 week. That really varies from person to person, no way to say how long you'll have them. Didn't you have them after your MX?
Sunny here in Oregon, then black and pouring down and then sunny! Crazy weather
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Hey, Dragonfly - Thanks for the info. I can hardly even imagine how it will be . . . I have lived with these implants for 4 years and they are still not a part of me. I am in terror over the whole surgery thing, but even worse would be to continue with these implants for the rest of my life . . . Were you wanting to be a C+ or a D? I am hoping for a full B or a very small C . . .
Yes, I had drains after the MX. For me, well, I hated them. My head was in a very bad place at the time, and they just made things even worse for me. Hopefully they won't bother me so much this time, since it's all for a good cause. I did not handle my MX very well - I was not one of those brave, strong ladies. I think I was mostly in shock the whole time. And I say that with no exageration.
I am a little concerned about the whole hunching over thing. I do have some lower back pain that I have been dealing with through PT and mild exercise, and I know that the surgery sure won't help it. But I will just have to deal with it. There are worse things. I also had a frozen shoulder after my MX, but my PT has shown me how to do just some easy pendulum swings with my arms, in the hopes of avoiding that again.
So were you comfortable in jeans and stuff by two months or so after your Stage 1? I do sit around in lounging pants and sweats alot, so that will be nothing new. But of course don't want to go out like that any longer than I have to . . .
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Try to not be scared, easier said than done but believe me this place, the surgeons, the nurses everyone is amazing. As soon as you get picked up at the airport you'll feel so much better. I really didn't care what size I had as long as I wasn't concaved/flat anymore.
I didn't mind the drains after the mx as much as the hip ones. I think the hip ones for me just made it hard to get comfortable and hard to figure out what to wear. They are tolerable for sure. NOLA has a great PT lady that you can have come to your room and do some exercises and stuff if you have problem with your shoulder. She came in and did LE massage after stage 1. Just try and walk upright as much as you can. They have you up and out of the bed I think 2 days after surgery and walking the halls. Take advantage of that, stretch, stand up straight, but move slow.
Hard to say with my surgery, I had my stage 1 in September, and not quite 2 months later I had stage 2. So I'm comfortable with them now, they never did hurt my stomach or incision but just felt tight or different.
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So far, I think 2 of the pendants are spoken for. They are just under an inch square and really brilliant silver. After you are done with your reconstruction in NOLA, they are now giving butterfly pins. These NOLA pendants were given out to women who attended the Show and Tell at the FORCE conference nearly three years ago, and I think there were only 40 of them originally. I received one for doing some showing and telling. I found them last week while at a trade show and thought I'd bring a few home because I know that some of you have been wanting them for a long time.
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Wow, Kim, you're there! I'm so glad you were able to arrange to have your thyroid taken care of at the same time - that's service! You'll get that pesky thing out and will manage very well with a pill to supply that hormone - thank you very much, NOT, thyroid! I've been fine without mine for many years now. You, too! And Phase 2 breast recon! Good luck, good luck, good luck, and enjoy the white stuff coming into your IV! Heavenly!
Sally - And you, at the end of the week! Another stay at the divine SCSH with their excellent cuisine, unparallelled service, handsome surgeons and unlimited icees!!!!!! Bon Voyage, bon chance, and to an uneventful recovery!
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Rogam,
after I was released from hospital (bilat delayed stacked diep) my brother drove in
fromBiloxi (about 1 hr away) and took me to his home until I went back to NOLA the next week for follow-up. Then I went back up to Jackson,
Warmly,
Marcia
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Ok, so I am well into being committed to having my DIEP done next month with Dr. D. And then a friend mentions a fat-grafting procedure done in Miami that is fairly new, and wonders why I am not doing that. The fact that it is fairly new sort of precludes me even having considered this, since I definitely don't want something that has not been around for awhile. But it did make me wonder if any of you had researched this/thought about it, etc. and if so, what made you chose DIEP over this? She said there is minimal or no surgery involved, other than removing my implants.
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Kaitsmom - I believe there is a thread on fat grafting. I know Dr. D has talked about it on his website. I think that there are issues with it, if I remember right. I am going to try to put some links on here.
http://members.boardhost.com/plastic/index.html?1242629062#1227485441
Sorry, I couldn't find the post that had the question about fat grafting as reconstruction, but you can go ahead on here to post your question. In all honesty, and if it were me doing this - I would go ahead with your reconstruction w/Dr. D. His work is beautiful and the staff there is top notch. Has the person that suggested this fat grafting thing ever seen anyone that has had it done??? Many of us have not only seen our own reconstruction - we have also seen each other's and we know just how GOOD our outcomes are with the team at NOLA.
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It's not quite true that there's no surgery involved. The fat grafting is done via liposuction. Lots of liposuction, several sessions, done over a period of time. There's a thread on here somewhere all about that, some women have had it done. Here's a link to the Miami doctor's site: http://www.miamibreastcenter.com/breast-reconstruction/after-mastectomy-miami.html0
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And let's not forget that liposuction had its own risks involved...
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I think I recall that Dr. D thought this procedure was still very experiental and years from being mastered.
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No, this person has definitely not seen any fat-grafting results, or even heard of until recently, I gather. Sometimes I think people are just trying to sway me from my decision. I KNOW it is a tough surgery, I KNOW it is a tough recovery. And I know I am not the easiest patient, due to allergies, and I am in ok shape but not great, but really. These other people have no clue. This is not about vanity. It is about being comfortable in my own skin again. I hope. I know they care about me, but I just do not feel that they are all that supportive of my decision for surgery, especially 4 years down the road from the MX. I think they feel like "If it ain't broke . . ." But it is broke . . . I went to see my breast surgeon who did the MX, just for my routine check, and told her what I was having done. She was not terribly pleased, and said, "Well, if it was me, I wouldn't do it and I would leave well enough alone". So says the flat chested surgeon who has never had cancer or chemo or had her breasts cut off. Sorry. Frustrated and feeling alone tonight. Glad you all are here . . .
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You don't need to justify this with anybody but yourself. Your frame of mind is very important to your survival. If it really affects your self esteem then it affects your health and well being. Don't listen to negative vibes from people who haven't walked in your shoes. Go for it and good luck with everything.
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I've stopped discussing my reconstruction with any of my doctors, I've found they have the same sort of shock and horror and dismay reaction. And frankly, I don't care what they would do. If they thought the surgery would interfere with whatever part of me they were treating, I'd take their opinion under advisement. But beyond that, I have no interest in what they think. I tell them enough to explain the scars they see, and that's it.
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Amy, lipo is very painful, and sometimes there is loss of sensation in those areas. In NOLA, we get lipo to even things out after surgery. I am telling you, This new thing, hmm. My thoughts: #1, it is new and unproven, #2, you have not seen ANY results of it (you have to see before and after pics), #3, you need to talk to some women who've had it done, #4, I don't think massive lipo would be my idea of a good time (lord), and #4, many many many of us have gone through this same thing with our own family members or local surgeons or local ONCs etc. They fear NOLA is fly by night or why would you travel, etc. My own husband was freaked out, made me go to Duke, I'll tell you more about it when we meet in person!
If you know this getting thos implants out and having a normal chest again is good for you, don't be swayed. This business of , "if it aint broke" that just infuriates me!!! Screw them Amy!! I had implants that drove me crazy for a few monhts, you deserve some chest peace!!!! (and the beautiful boobs won't hurt either!!)
Sorry you are going through this, but the second guessing by everyone around you nothing most of us haven't been through. Just make up your mind, put your head down, and go.
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