NOLA in September?
Comments
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Dragon~ Are you getting nips this time ?? Wow, typing that out sounds so personal...sorry.
I sadly enough have gained back all that I lost from Chemo but you know what my girls rock, football flaps and all. I just wish that I didn't have three darn little keloids near my cleavage. The knots in the stitches are where I got the keloids and I am not prone to them. I still love them, my first set wasn't perfect HELL they tried to kill me and this set isn't either. Like Nordy, I was concave and I had lost all scar tissue so I could feel my ribs without any padding
. It was horrible my baby couldn't cuddle with me and now I tease him all the time because Dr. S gave him back his pillows. 0 -
Justlaura - I get my yoga pants at old navy, I have about 6 pairs and LOVE LOVE LOVE them!! Here is the link to them: http://oldnavy.gap.com/browse/product.do?searchCID=68131&vid=1&pid=633123&scid=633123082
Yes I am getting the nips, I'm SOOOOOOOO nervous about that part, I want them to turn out and look good and not go flat etc..Jaimie, did you read my post the other day about the guy I'm dating??
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well, am coming up behind you merrilee for my number 3 next week...and why are you getting fluids today? i saw that on other forum.
also wanted to say too that i am sorry to hear of your loss, and can only hope for all that if it was expected, your brother's passing was peaceful. and while you lovingly acknowledge how hard this must be for your mother, please dont underestimate sibling grief and how that can play out long term too...there is a good book on sibling loss called the 'empty room' if you are into reading. the whole world readily acknowledges and recognises the deep grief of parents losing a child, particularly mothers, how it eclipses all else and is grossly unnatural for a parent to bury a child - but that means that sibling loss is too often overlooked in our society, or disregarded alongside the enormity of parental grief.. there is a very good support group for parents who have lost children AND for siblings called Compassionate Friends- think they have about 600 chapters all over the world, you can google your city..and they recognise sibling loss equally in how they hold their meetings ie. siblings meet separately. it is def too early now when things are so raw, but maybe later you and your mother may consider trying a meeting out..lots of love, rosemary
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oops wrong forum. sorry guys, Rosemary
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I have another question (sorry). CaringBridge.
Has anyone used this to keep folks at home up to date on your status? I have been on the recieving end of this many times as I have supported others through surgery. But now that it is my turn I am unsure about this. I'm not sure I want the whole world to log on and know what is going on with me. If we did use it my husband would be under strict orders to keep it high level (I don't need friends from high school knowing they were able to save my nipples!). I have told a core bunch of friends exactly what I am doing, other just know I'm having surgery because I was diagnosed with cancer, and others don't even know that. I am very recently diagnosed and haven't really told everyone yet.
But that is beside the point I guess. Have you used it? Were you able to 'keep control'? Was it helpful? Would you use it again? Does SCSH have their own system of some kind?
Thank you
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I have never used it, I just didn't need 1 more thing to update ya know? I have my facebook page, and keep my friend list pretty small. Everyone there knows what's been going on so I post it on there. Basic stuff, like heading to NOLA, or going into surgery, or in recovery etc...
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Hi Dragonfly. I'm so happy all of this fell into place for you and I am so excited to meet!
JustLaura. I sent you a PM. I think we'll both be at the Homewood Suites at the same time.
Fingers crossed - hoping to actually make it there this month!
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Thank you, me too!!! Sounds like there will be about 4 of us meeting up. I can't wait
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Hi everyone. One day post-op and I am doing vey well. Got up and took a walk around the floor. Was pretty tired after that. Turns out Dr. S was able to do the entire reconstruction with hip flaps. It feels great to get rid of the implants. I have not seen my new breasts completely but am very happy with what I see so far. Tomorrow is shower day. Looking forward to that but not looking forward to taking this compression garment off. That is going to take multiple hands!
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Rogam - I hope you are more comfortable now and doing well. I have been watching your progress. I will be a little bit behind you. Stay tough!0
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Ref, sounds like you are doing great!! Good for you! Thank your hubby for posting earlier. Shower day is good, but showers will poop you out, it does feel good though! Nice you only needed hip flaps.
Christine, hopefully you will be happy with your implants. If you ever do natural tissue recon, I'd suggest you look carefully at NOLA. Just my opinion!!
Laura, I used CaringBridge during my treatment and initial surgery. When I did stage 2 and 2b, I didn't want to do it any more. It was helpful for when I used it though...
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Ref-Great news that you're doing well. I'll be having bilateral hip flaps in August. It's so nice to read posts from someone as they're going through it. Thank you. Yay, for getting to shower tomorrow.
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How are you now, Ro? Hang in there. How many cc's is that drain puttin gout???
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Congrats ref--good to hear from you and great to hear your surgery went well. Have fun tomorrow with shower day--it was exhausting but SO worth it! Make sure to have an ICEE or two :-)
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Ref- That is wonderful! One day at a time, compression garment?
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for that first shower - know that they have shower seats if needed. i didnt know that until after i stood to take my shower. i should have asked. so if you need it feel free to ask.
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Hi Ref! That's great. I had the same thing with Dr S. He marked me up for hip and diep but ended up just using the hips. Don't worry about the compression garment - the nurses do all the work for you!
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Spring,
I am so sorry I am just now getting back to you. You ask how I am doing. I am at MDA in Houston now for test. I will see the Dr tomorrow with results. I have had some progression on XELODA. If I show much progression I will be changing chemos. With mets you never get settled. Something is always changing.
I am trying to get in a trial that show a lot of promise for bone mets. I will have to go to Miami, NY or Boston. We will see if I met all the requirements.
Thank you for asking. I feel very lucky that I am not in a lot of pain.
Best of lick to all you girls in NOLA and to you who are coming up. I hope to go to the reunion in Oct.
Bettye0 -
So good to hear from you Bettye. I'm still thinking of you too and sending prayers for your continued strength. Thank you for letting us know how you're doing.
Ref - congratulations! You'll feel better each day now, little by little.
Hi to everyone else too!
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JustLaura, I just looked up the Old Navy yoga pants. I had similar ones to the fold over type they carry and they were very comfy. I don't know about SGAP or back hips, but for DIEP your incision is low -- just a bit above your pubic hairline. Also you will have some fairly thick pads that you place over the incision line. Dr. D starts his pts with a compression binder right away. Dr. S has you wait until all of your drains are out, and you will probably still have one or two when you head home. (I had both breast drains and one tummy pulled at post op visit and the 2nd tummy 3 days later at home. Dr. S has more liberal parameters than Dr D --50cc or less x 3days.) For some reason they gave me both the white binder and the DOM( yes Dragonfly). They said some women prefer the DOM because the white one rides up all of the time. I found this to be true. I had to get them to send me a bigger sze, but once I had the right size, I've been in it since. Do check out the Maternity(!!!!) leggings at Target if you like leggings. Brand is "Be Maternity" and they are incredibly soft and perfect on your tummy -- you can pull them waaay up or roll them down. They have been my favorite thing since surgery. I'll echo what others have said. I brought a TON of stuff cause I couldn't figure out what I'd need and I wanted to cover all contingencies. Normally my husband would have freaked, but he felt so sorry for me...my agitated packing state....that he just quietly hauled all the luggage. I had a huge duffel, and a carry-on ( in case the checked stuff got lost) and I don't think I ever even went into the duffel! One thing that did help...I separated out the stuff for before the hospital, leaving the hospital, flying home, into different zip -thingys, each complete with underwear, etc. I didn't want to have to be directing my husband thru my stuff -- that, no not that-- especially for leaving the hospital when you may not feel like rummaging around.
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JustLaura, I just looked up the Old Navy yoga pants. I had similar ones to the fold over type they carry and they were very comfy. I don't know about SGAP or back hips, but for DIEP your incision is low -- just a bit above your pubic hairline. Also you will have some fairly thick pads that you place over the incision line. Dr. D starts his pts with a compression binder right away. Dr. S has you wait until all of your drains are out, and you will probably still have one or two when you head home. (I had both breast drains and one tummy pulled at post op visit and the 2nd tummy 3 days later at home. Dr. S has more liberal parameters than Dr D --50cc or less x 3days.) For some reason they gave me both the white binder and the DOM( yes Dragonfly). They said some women prefer the DOM because the white one rides up all of the time. I found this to be true. I had to get them to send me a bigger sze, but once I had the right size, I've been in it since. Do check out the Maternity(!!!!) leggings at Target if you like leggings. Brand is "Be Maternity" and they are incredibly soft and perfect on your tummy -- you can pull them waaay up or roll them down. They have been my favorite thing since surgery. I'll echo what others have said. I brought a TON of stuff cause I couldn't figure out what I'd need and I wanted to cover all contingencies. Normally my husband would have freaked, but he felt so sorry for me...my agitated packing state....that he just quietly hauled all the luggage. I had a huge duffel, and a carry-on ( in case the checked stuff got lost) and I don't think I ever even went into the duffel! One thing that did help...I separated out the stuff for before the hospital, leaving the hospital, flying home, into different zip -thingys, each complete with underwear, etc. I didn't want to have to be directing my husband thru my stuff -- that, no not that-- especially for leaving the hospital when you may not feel like rummaging around.
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Bettye! Thanks for checking in. So sorry the Xeloda isn't working. But it would be so great if you could get into the trial! Also glad to hear your pain is minimal.
Hi Laughlines!
Ref - Glad to hear you're getting around.
Ro - Let us know how those drains are feeling. I had bad pain with one of my drains, too. I heard that sometimes the tube rubs up against a nerve. I agree that padding around it helps immensely!I hope it works for you.
Re: "paddles" - don't worry too much about those. I'm 4 1/2 years out from my delayed recon side and the scar lines are very very subtle now. Also, for some reason I don't get, the difference in skin tone is totally gone. I mean, I hadn't been lying around in bikini's (until after the recon, that is) for almost decades! But the abdomenal skin was significantly darker than the chest skin it replaced. But for some reason, it has now gotten just as pale as the original breast skin. Looks great! I posted pictures on Tim Tam called something like "DIEP 3 1/2 years out". It made a lot of women feel better to know that there will be LOTS of improvement over time.
I never remembered post-op until my very last surgery - and that was, like, my 7th surgery there? I only ever remembered waking up in the room. But the last time, I did wake up in recovery. I was so happy to be able to remember, finally! And then I started to cry because I was so happy to finally be done and because everyone there is so great. And Dierde was there and I thanked her, on behalf of all of us, for how her humor helps us so much. She has an unusual sense of humor some times - acting really tough and bossy, but it's hysterical! Yes, we just laugh and laugh and forget to worry about surgery. And then we're waking up in our rooms!
(Dr. D. is the best)
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LOLOLOLOL - Eve!
Beautiful Bettye- I am sorry to hear about the progression, but do hope that you get into the trial you are wanting. Positive thoughts and prayers for you.
Ref - I am glad you are doing well! Do not worry about the shower. Yes, it is exhausting. Yes, it does take a bit of help to do it the first few times. Yes, it takes FOREVER to get yourself back together. When you are finished you will be ready for a nap! But it feels so fabulous to have your hair and back washed! (The nurse will totally wash your back and it just feels fabulous to get some stimulation to your skin!). Have a GREAT day tomorrow and don't be hard on yourself when you feel like you have run a marathon after your shower. Just take a nap and rest. It WILL get easier.
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Well, slight setback here, possibly. They tested my blood in the afternoon and later that evening said my levels are low. Could just be from the extra drainage after walikg. But Dr. S wants another check on blood levels in the morning to see if I need blood. If I do, that would put a hold on the shower. I'm pretty tired but I hope it's just from the drugs.
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Hello Ref.. I remember waking up in the middle of the night and talking with Nurse Holly, Laura and Spenser! I pray that things get better.
Ladies thanks for check on the drain thing- yikes.. They are still putting out 35cc but the color is changing and I know the lighter/ less the better. The pads are not working as they don't stay in place. I am just trying to chill. I know that once these are gone things will be much better.
I am not big on rx meds but I have gone thru a bottle of vicodin like altoid mints--lol.
Yesterday I had a fever called the ctr and the prescribed antibodies stronge enough to fight off anthrax!
I got a chance to meet Dr. Massey as she made the rounds on Saturday before I left. She seem very excited about my new boobs!!! She was even happier that i was so mobile. She said that a lot of women struggle with mobility especially us plus size ladies she said I made her proud. She said I was so far ahead of the curve that I could leave on day 3 vs4 which is her preference. He'll I knew that if not Saturday then it would be never... The care was tha BOMB.com.
I have been reading that you guys were foggy on the details following surgery..ME too.I could not believe that my surgery went from 7:30-4:30??? Dr D said some about a diep 2 case study..
Please update me on what to expect for stage 2... Need to plan this thing out now.
I am so thankful that you guys are here to share! When things get crazy I pray. I love all types of music and new fav is by Kirk Franklin --smile check it out if you are in need of some encouragement..
Enough.. Good night/morning
class='post_sig'>Ro Gamble
Diagnosis: 4/3/2008, IDC, <1cm, Stage I, Grade 3, 0/7 nodes, ER-/PR-, HER2-0 -
I will be going to NOLA for a consult with Dr. S. on June 15. I don't think my insurance plan is a preferred provider. Anyone know the costs associated with non preferred provider for insurance? This is my first post. Hope I'm in the right forum.
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Morning Surfagrl.. Not sure if they are in network for most people. The good news is that the will work with you and handle the insurance stuff.
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Bloodwork in and I will need one unit. So I already took my walk, before I get hooked up again and will hopefully be able to get that shower this afternoon or tonight.
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What state are you from surf a girl? And what insurance do you have? There are many on this forum and DIEP 2011 that can help you find PS that maybe in network for you. Let the providers deal with the insurance issues. Make sure you understand what your out of pocket expenses will be because some DOCS don't balance bill and some do. Good Luck and hang in there.
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ref glad to hear you're doing good, i bet you'll be thrilled with the results and especially thrilled to get rid of the nasty implants!! Get lots of rest, take care!
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