NOLA in September?
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Paula, what crazy 'weather' you are having!! Biblical! I have to say I am sort of relieved to read that you are having breast pain as well (not in a mean way, of course
) I am still having pain also, and it was fairly intense last night and it made me think that maybe something was going wrong. I keep trying to tell myself that I/ we are a month out (hard to believe) and that it is not toooo likely that there would be a problem now. It's just that I have been through so much to get these breasts and I don't want anything to happen. See - there is a reason they tell us not to pick at the glue!! I still have a lot on my one breast, not as much on the other. My PS here suggested that I could put some Vaseline on to loosen it up a bit. Not sure. I did buy a new tub of it, though, so if I do put it on, it will be 'fresh'. I am so longing to sleep on my side. I am counting the days. I have not even shifted to my side even once, I am so afraid. I did go braless yesterday because I have had so many rashes from the compression, maybe the bra itself, the binder, the meds, etc. But I will be back in it today. And my breasts are not terribly large, maybe a large B, closer to a C I think. Still not sure, haven't really tried any bras on except the Fruit of the Loom that Jerusha recommended. I have not had a real bra with a cup for 4 years . . . I have found a "waist nipper" by flexees that I wore on Sunday, and that felt ok, and unlike the binder, I was able to get a pair of shorts on over it so it was better for going out in, and not quite as hot. I also got some very "tall" underwear, - Control It, by Maidenform, that actually come up to right under the bra. I know I am going to feel better with some support for another couple of weeks or so, so I can wear those or the waist nipper when I go out, and the binder at home. I found these at Kohl's.
I hope you can get started on the PT soon. I developed frozen shoulder after my mastectomy and the PT made all the difference in the world for me. The sooner you can start, the better off you will be.
I too feel like I have bonded with the women here - what a great bunch! Even though so many of us have never met, I feel like I know and care about all of you.
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I feel like I'm doing this so out of order. You all seem to have been through all of your other treatments except the surgery. This surgery will be the very first thing that I do as part of my treatment. I don't even know what other treatment I'll need. They can't tell me anything until they do the lymph node testing and pathology after my mastectomy. Part of me thinks that I'm doing this all wrong! Did anyone else have that feeling? Am I just going crazy because my surgery is a week from today and I'm starting to lose it?
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Laura.. Lots of women have had surgery first and then get their results and then start other treatment... see cider, dawn and many others who just had surgery as their first step.
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Laura, you are OK and you are not doing anything wrong!! My path started similar to yours. My treatment was supposed to be surgery. My biopsies and screenings showed I'd only need surgery and hormone treatment (because of my age). I'm so grateful I found out about NOLA and pursued it. I felt like I had a leg up. Unfortunately for me, another cancer, a third type, was found during my mastectomy. Well, maybe it's fortunate so that I can get the treatment I need. Do not fear what happened to me, though. It was a surprise due to the dense breasts. But that is exactly why they do sentinal node biopsy and breast pathology. I had gotten so wrapped up in thinking "surgery" vs "cancer" it was sometimes hard for me to remember it's not about a seamless transition from my own breasts to reconstructed breasts. It's about getting rid of the stupid cancer while doing what I can to keep my quality of life to it's maximum. It's hard for me to fully relate to the other ladies who have been breastless (or disfigured breasts) and then are overjoyed with their reconstruction, including the skin patches. I've been privileged and blessed and fortunate to have skin sparing mastectomy w/immediate recon, but there is still room to grieve for losing those natural breasts and adjustment to the recon breasts.
Laura, since my experience is like yours, I've read many many times that women really wished they could have started their journey like yours and mine. Embrace it!! We are lucky.
Amy, I'm not in any danger of frozen shoulder. I guess my range may be subjective. I've always had very flexible arms and I can't stand to feel them constricted and the various pain! But I will get on setting up PT this week.
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Ok ladies I'm getting closer to my NOLA trip and getting super nervous about the nipple part. How do they do it, how realistic do they turn out, what's the recovery like, what can I wear after, odds of them not turning out good? Funny I had almost no anxiety about going to NOLA in the beginning but the smallest part of the procedure is freaking me out.
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Laura - I went about things the same way that you did. Straight to surgery. I think the aesthetic outcome has been great and they were able to spare my nipples. Like cider said - I feel lucky to have found NOLA right away. For me there definitely was a mourning period post BMX - they feel and look different...but I'm 4 months out from Stage 1 and they now feel very normal...but I have to admit in the beginning they felt like I had pillows sewn on me. I was lucky - even though I had dense breasts - they didn't find any more than they had expected. My nodes were clear. I prolonged going to an oncologist because I was so scared he would tell me I needed more than I had already done - but I went yesterday and I'm good. But the truth is they can't tell what's in there until they take them out and do a pathology report. You may be done like me, or you may have more to do...but whatever happens the NOLA doctors are behind you 100% and will do their very best to give you beautiful breasts when all is said and done.
Cider - I wore my bra, even to sleep, for 3 months. I felt very unprotected without it. I bought some wireless bras (so hard to find!) about 2 months out and wear those every day too. I guess I'm not a go braless kinda gal (yet!)
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Thanks so much all! I really appreciate you taking the time to calm my nerves!
I think my brain is flipping into high gear and I'm hitting all the emotional cylinders right now. It is helpful to know I'm not alone in the surgery first area. I just can't get excited about this surgery and I'm not going to be happy when it is done,. But I will be VERY glad to have the cancer out! And that is what I have to keep repeating! And I do feel so fortunate to have found NOLA where I am able to get immediate reconstruction - I do know this. I have to snap out of my pity party - very unattractive!
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Laura, I think you are perfectly entitled to an occasional pity party! And you don't have to feel happy about any of this either. I think many of us find the time in the weeks just after our cancer diagnosis to be really, really hard. So much information, so many confusing decisions. I say give yourself permission to feel however you feel as you go through this.
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I second what Amy said.
Kathryn - Wooohoooo on not having to have more treatment! That is awesome!
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Laura, those of us celebrating have generally had delayed reconstruction, and so have gone breastless, or with impalnts that have been burdensome, for a period of time. I myself had implants for nearly 4 years, (4 months of expanders before that). They were just uncomfortable at first, then got progressively more uncomfortable, and then finally downright painful. By the end, I was ready to take a knife and cut them out myself! They did not look anything like a natural breast, and I never had nipples done because I really didn't feel it would help that situation significantly. So for me, to have the opportunity to have something done to give me a look that is so close to my natural breasts (the nice ones I had for 3 weeks after my breasts reduction and before my MX) - well it really is a Godsend and a big step toward me being "me" again and healing after 4 years of avoiding the mirror. BUT, even in the time I was approaching the DIEP, I mourned all over again for my own breasts, and had a big ol' pity party that I had to go through this at all. And at nights now, still, when I am overtired or have pain, I get a little low, and angry. But I can tell you this - you are so fortunate to have been able to do the surgery first - you will have the best possible outcome this way, I think, with the NOLA docs involved from the get-go. You are in the best of hands there. And yes, I am biased, but I really do believe that (and am in awe that) I had one of the best doctors IN THE WORLD operating on ME! Little old me! That amazes me. I am sorry that you are having to go through this at all. It really sucks, no getting around it. But we will all wish and hope and pray for no further treatment necessary for you. Oh, and if you are going to have a pity party (which is perfectly acceptable, and to be expected, if you ask me), please serve yourself the proper refreshments! My fav treats at my pity parties are M&Ms by the handful, or a great big triple chunk brownie! Really, I guess I am trying to say, don't feel bad for feeling bad, and don't think anyone (at least here) expects you to be happy or celebrating about your circumstances. Your feelings are your feelings. Maybe the relief you will likely feel upon getting the cancer out will be enough to help you on your way to adjusting to your new body. In the meantime, cry, scream, pound your chest, wail, holler, bitch, vent, whatever it takes. Have a laugh if you can. It is a journey. . .
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Kaitsmom - I love what you wrote and agree 100%. I'm a big M&M fan too and actually got myself a big ole bag of them and ate half of it in one sitting. Stomach hurt but my soul felt a little better.
JustLaura - I think we all go through what you're going through...and I still go through it too, but with less frequency. You'll get through it and we're all here for you.
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Kaitsmom - thank you. thank you. I have read what you wrote several times now. You have a great way with words. I do understand where so many women here are coming from with delayed reconstruction. I definitely understand the elation that is felt when you have felt incomplete for so long to feel right/complete/whole again. I totally get that. I think the women that I have read about here are some of the strongest, gutsiest, amazing women that I have had the pleasure of corresponding with.
I know I'll get there soon. I have had 34 days since my diagnosis and 10 days since scheduling my surgery. I know I like to have control and now I find myself in a situation where I have absolutely none. It is humbling and hard, but it helps to tremendously to participate on this forum.
Thanks again!
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For those of you with implants first (for whatever reason), was your flap surgery more or less complicated as a result?
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Christine, there is no difference. They either have to remove the breast tissue, or the implants, or just build a breast if someone is flat. For NOLA, none of that makes a difference. If you had breast reduction prior, this doesn't make a difference either - though locally I was told this made me more "complicated" and I should "lower my expectations" for the outcome. I am SO GLAD I did not stay local!!
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JustLaura, You have been able to accomplish in a month what it took many of us MANY months to figure out, so let yourself feel good about the efficiency and fortitude that you have found. And in doing so you have saved yourself some procedures along the way, such as lumpectomy. And, as many women have mentioned --- while it is not a priority at the moment--- you will get the very best possible reconstructive outcome, with new breasts as close to your current ones as possible, by doing it this way. It's absolutely the best approach. There's no down side... Not to mention that you will not have to endure the shitty, inhumane, inept care that many of us experienced at other hospitals. You will be gently and kindly nurtured and cared for at our wonderful NOLA! But this is such a hard, hard time... To have to plan and pack and arrange for all that goes into this surgery while also worrying about your treatment is just too damn much. Eat MANY bags of M+Ms, and lots of ice cream, too. And whatever else seems like a comfort. (I got Kaitsmom started on Mac-+ Cheese and I dont know if she'll ever forgive me! ) Remember, you are surrounded by the caring circle of your cyber-friends and we will stretch out our arms and catch you if you fall.
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Just Laura.. Another thought... There is not much talk about it on this thread -- Im not sure why -- but learn about Oncotype testing. If your nodes are clear, it is a very important piece of information in planning treatment. If you don't know much about it there is a good piece on it right here on bc.org. Oncotype testing is a blood test. There is also another, less frequently used genomic test that requires tissue from the tumor itself so must be done at the time of surgery. I can not remember the statistics on that one, but I remember that I learned about it too late. Sorry to add one more thing. I'll try to look it up again if you want .
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Jerusha... aren't tissue samples saved forever from the tumor?? I would think it is never too late to test a sample.
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No, Jerusha, I'm not going to forgive you! I have had way too much mac and cheese since you put the idea in my head, including at lunch today today! There will be way too much for Dr D to lipo away at my stage 2!
(love you anyway) Speaking of stage 2, for you 'veterans', are there drains involved? I may have asked this before but I don't remember! And would I be pretty 'safe to schedule stage 3 about 8 or 9 weeks past stage 2? Just trying to plan the rest of my year. Yeah, we'll see how well that works! 0 -
oh, and thank you for your kind words, Laura. . .
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Betsy, I need to look this up again.... Yes there are tumor tissue "blocks" made that stay around for a long time and slides can be prepared from these, kind of indefinitely. And this is what is used for the Oncotype test ( sorry, I said blood, before, that's for genetic testing like BRACA-- not genomic testing, ), or if you were to want to have your slides read at a second institution, or whatever. But for this other test you need fresh, not preserved sample. At least that's what Im remembering. Sorry to throw out this incomplete --and confusing --piece of info. I'll try to retrace my steps from a year and 1/2 ago...
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HEY LADIES, JUST CHECKING IN. I TRY AND GET ON TO READ POSTS A COUPLE TIMES A WEEK. MY KIDS KEEP ME RUNNING, BUSY WITH SCHOOL ACTIVITIES, SUMMER, ETC. JUST GOT BACK FROMA GREAT VACATION AT NC BEACHES--AND GETTING READY TO HEAD TO RALEIGH, MY HOMETOWN ALSO ORIGINALLY! FOR BEVERLY AND AMY: HOPE WE CAN GET TOGETHER!
I HAVE HEALED UP VERY WELL. I STILL HAVE SOME BACK PAIN, BUT IT IS MANAGEABLE. I WAS ABLE TO FINISH UP PRETTY MUCH EVERYTHING IN MY STAGE 2B WITH DR. S--INCLUDING THE NIPPLES. I AM STILL DEBATING THE TATTOES AND LOOKING AT POSSIBLY HAVING THEM DONE IN ASHEVILLE, NC. THAT IS CLOSE FOR ME AND I USED TO LIVE UP THAT WAY. FIRST THOUGH-- I WILL CONSULT WITH NOLA ON MY MOST RECENT PHOTOS TO JUST GET AN UPDATE!
I WAS ALSO VERY LUCKY WITH INSURANCE: I PAID NO OUT OF POCKET AT NOLA AND IT WAS A GODSEND! BUT I HAD ALREADY HAD NUMEROUS SURGERIES BEFORE NOLA TO INCLUDE TWO IN CHARLESTON. I FEEL WE ALL REACH OUR OBSTACLES/JOURNEY IN OUR OWN WAY! I KNOW THAT NOLA WAS THE PINNACLE HEALING MOMENT FOR ME!
SO-- HAS THERE BEEN ANY UPDATES ON HOW MANY PEOPLE ARE ACTUALLY GOING TO TRY AND BE THERE FOR THE NOLA REUNION IN OCTOBER AD WHAT ARE THE DATES?? I WOULD BE INTERESTED.
ALSO, IS ANYONE ON SPRING'S FORUM INTERESTED IN US EXCHANGING NAMES FOR FACEBOOK?? IF SO: CAN WE LIST OUR USER NAMES? MY USER NAME ON FACEBOOK IS -- HEATHER TEWELL.
LOVE TO YOU ALL!
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Betsy, it's called Mammaprint. I just did a quickie PubMed search and couldn't pull up a single article comparing Oncotype Dx with this one. I think another difference is that the Mammaprint can be done even with positive nodes, while the Oncotype is not. Surely there must be some literature -- it did get FDA approval several years ago, but I dunno. There is plenty on Oncotype Dx testing.
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Jerusha - Congrats on your daughters grad , and your Anniversary. We just got back from college orientation tonight. Thank heavens it was in state and only 4 1/2 hour away. Two days long and they couldn't even sign up for classes till the end of day two. Glad you are doing so well your able to go back to work so soon after stage 1?
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Jerusha... I had no testing done to determine treatment since I had a positive node, my MO decided chemo was a done deal regardless of a score... I have remained curious though.
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Heather.. I am Betsy Schreier Davis on facebook.
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My facebook is Kathryn Kaycoff Manos (the one with the hyphen is my work one, this one is my personal one.)
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Ladies-Following your reconstruction journeys has been so helpful. I hope that you don't leave this thread for facebook. I need to hear the good, the bad and the ugly to help me get to the otherside!
Jerusha-Congrats on all your milestones this week! I hope that you got plenty of rest today.
DsnyDawn, Kaitsmom, Jerusha, Ro, Ref, Cider8 -Glad that you're all healing well!
I wish that there were others on this thread heading to NOLA in early August!
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I'm not posting my full name here! PM me if you want my facebook name. I'm going to send a FB request to those who put their name up.
There's no way I'm leaving this thread for facebook. I cannot talk about pooping and plucking areola hairs on FB!!
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Facebook name Bettye Edmondson. SURPRISE!
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LOL! Cider!
Yay, BettyeE!!!!!
Yes there's a drain or two after stage 2, depending on the lipo, I believe. I think that anytime they remove something from your body (like fat), there's an empty space that they have to help close up. So they drain away the fluid that wants to go in there, so the hollow can close -- or something like that! But the drains aren't in nearly as long.
My Facebook name is Eve Wallinga
Kaitsmom and Cider, I always love your posts!
Yes, the Voodoo Blood - or perhaps it's vampire blood... It has magic recuperative powers. But sadly, its effects diminish as your distance from NOLA increases. But when you return, it kicks in again!
I think I will not be making the reunion, as I will be spending Halloween week there instead -- it's in my blood. WAHAHAHAHA!
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