NOLA in September?
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Victoria B -- So sorry to hear of your troubles. Sometimes we allow external things to drive us too much, forgetting ourselves and what our needs are. It is terribly upsetting and there are many here who can relate. But, and this is a big one, you started this journey for you and you need to complete it for you -- everything else, all the logistics and time from work and the whole 9 yards, will in the end resolve as you focus once again on your needs at this time in your life. I am a great one for not taking care of myself and seeing to everyone else, but for this one time in my life (cancer and the aftermath), everyone else had to take the back seat while I managed to get my priorities straight. And I so agree with your signature statement, about cancer being a thief, but don't let it steal this that YOU need now. Hang in there ... with you all the way.
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Hello New Orleans!!! I was so lucky to get to meet up with surfa & dj at the hospital. Meeting ref at irene's for dinner. My friend flew in from NY to spend the weekend. I just got done trying to explain the friendships & connections that we build through this website, through surgery with our fabulous docs & through being bc survivors. I think she gets it... Lol. Hope you are all doing well!
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Victoria, that is a bummer. I second what Celtic says. I hope things work out, but if not, I hope you do it for you...
Nordy YAY!!! Have fun!!! Surfa, DJ and Ref!! Wow!! Lucky! Good luck on your consult appt with Dr. S... let us know what you find out.
Betsy, YES, Voodoo Doughnuts! I am back on the wagon now, but boy, did I indulge in doughnuts! When we were out in Oregon visiting our older daughter, I got to visit Trisha and then Nordy in Portland. Oh about plication, I think typically, it is the entire ab area, from down low to up high. For me, Dr. D was on the fence about doing it at all (it is my regret that I didn't say, Okay then, forget it!) but he said, Okay, I'll do it from the navel down. So that's what he did for me. I guess he felt that I could get some benefit down there, but not higher up. Hope that helps! I have suggested to others that that ask the doc for their opinion about plication if they are considering it. Find out if there will be a significant cosmetic improvement. If not, I'd advocate skipping it. My take.
Spring.
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I have no issues at all from the navel down... my issues are from the incision up... and most specifically above the belly button... I have a feeling that since I was a borderline DIEP flap candidate anyway (did not have enough fat for two breasts) and even after the hip flap surgery, he was not thinking a tummy tuck would be worth it for me at stage II, maybe plication is over the top... Of course I did end up with the DIEP flap in the end, but only for one breast as a do-over.
I will say that his lipo on my flanks and legs has worked out greatly.
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Victoriab - I am so sorry to read about the problems with your breast. I don't have any experience with failed flaps but I hope it in the end everything works out for you.
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VictoriaB- I am so sorry you are dealing with this. You have done everything you can to stack the cards in your favor. I also agree with Celtic. This is for you - you get to put yourself first and go after what you feel is right for you. See what your options are and then decide. The doctors are skilled here and there is a plan B if you need it.
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So.. I just sent another set of pictures to Laura... showing my left breast and how distorted it looks compared to the right.. Even if the hardness subsides, it will not plump up like the right one... there is a huge discrepancy IMO between the two... I had sent photos Dec 22, but they were away and then I guess she forgot to show Dr D... I am generally a patient person, I just want to know if my problem is major or minor... If its major, I'd like to know the game plan.
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Hi ladies! I'm now 4 days out and at the hotel. It seems to have gone well. I do have some questions for you that I'm sure you've had to answer before, but I'm too tired right now to do a search!
1) Have any of you noticed a little black-ish color arouond your nipple (and on your nipple?) I called the N.P. and she told me it was normal...but that color makes me very nervous!
2) One of my biggest problems has been incesscant itching. They took me off IV Morphine, and then another IV (Stared with a D) and finally took me off all that and put me on vacadine orally. It's better, but I still have a bad skin reaction (almost welts that are breaking the skin.) What have you all done to combat this?
3) Sleeping isn't great--even though I've taken multiple bendryl, vicadin, ambien and antibioitics. Is still woke up a 2!
4) Lastly, assumming I get rid of the breast drains at my post-op appointment, what do you recommend to use for hte hips drains so that I don't looks like I'm carrying around a monkey on my stomach!
Thank you!!!
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Stage two has been fun for me with my NOLA sisters. I also had an opportunity to meet two other women at the Center who were having surgery. I shared our discussion board and hopefully they will join us.
I think the morphine made me have some hallucinations because when I met Ref the first day, I thought she had hair to her shoulders but when I saw her the next day she had short hair. Oh well, at least it kept the pain to a minimum. My husband also told me I kept telling him to switch the tv channel to channel 9 our local news in hawaii.
Itching- call the center. Dr. S took me off the antibiotics and it stopped.
Sleeping- the pain medication made me sleepy so I took it at night. When I didn't need the pain pill I took Benadryl. I didn't sleep during the day so I could sleep at night. The things u r experiencing, I had the same. I didn't fight it. I stayed up late watching movies and just woke up when my body woke up. I walked only a few blocks very slowly to eat. I also took a tour of the city in the town car but u can use a cab; probably cheaper. I took a cab to the mall by the Hilton and watched the boats from inside the mall and shopped at one store then sat down for 20 minutes and would go to another store, etc.
I need to do laundry today and the Hampton inn does not have a washer so we r off to find a laundromat.
I don't have as much pain this go around. I'm not going to worry about things until I start to heal. The recon breast does look smaller now but I'll wait and see. It did feel heavy when I worked out so hopefully it'll alleviate the problem.0 -
VictoriaB, I had surgery on 12/1. i am a unilateral hip flap...both hips as i had a ton of complications over the summer that left me with a 9 inch open wound over my heart! That is why i had two flaps to make one breast. Anyway, after i was released i had a near flap failure. One of the blood vessels on the flap closest to the center of my chest kinked. Luckiley i knew something was wrong and got in. They went in for another surgery and was able to save that side. Fast forward today...that same flap may need to be replaced. It is very hard in a lot of places but soft in others. Still very warm, it has shrunk. I went to see Dr. Massey last week and she said it may be saved but if not she will put a baby flap over it. So to plan on another stage one but not as extensive. It bummed me out but at the same time i knew i was a complication to begin with. Not thrilled about have to have a baby flap coming from my stomach as i like my stomach the way it is and do not want a scare. But i also want a breast. I totally understand your disapointment!
Hugs,
Michelle
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I have the same concern... but am out of harvestable areas... My left breast (about 1/3 of it) is firm, and indented and smaller on that side than the other side... so If I were to need a baby flap, I have no idea where they get that from... I look fine in clothes, but I have been through a lot and want to look good naked too... My indentations and distortion is much more prevalent in the morning and almost not noticeable at all in the evening.
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Betsy, i have noticed too that the "bad" flap has gotten smaller. The outside flap is nice and jiggly and has wonderful volume. I am just like you...i want to look good clothes or no clothes. I like to wear small bikinis and don't want to change that either...i am sure if she takes my tummy i might have second thoughts though. I also have a little distortion on the bad flap in the AM that gets better in the evening! I am trying not to be too negative because a just over a month ago i was living with the big hole in my chest that was concave so this is MUCH better but still not fair that i had to have my breast taken from me anyway!
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Besa, Betsy, Tigsun, Spring, Celtic and Ladies,
Thank you, your support means so much to me. I know we are all in the same boat. You are all right, I never put myself first, and this time I have to. Michelle, my breast is warm too, but shrinking and hard. I also get some pains in it once in a while. It has never been right.
I think what is overwhelming is that we all listen and do everything they tell us to, we undergo the surgeries, the tests, take time off, and still there are problems that crop up. They are watching something on my liver and the tamox and lupron have made me have the worst hot flashes ever, and eye issues. Through all this we are trying to keep it as normal as possible for the kids and it is tough. I think I am going into a depression as I thought this would be smooth sailing now.
Thanks again for listening--means so much to me!
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Michelle... I am curious what she tells you. I had bil hip flaps in July and then they used my belly to re-do my right side after skin necrosis and heavy leakage... And at the time, I expressed concern to Dr D that the left side was so firm, and while he is in taking my ab fat, maybe he should investigate the left side too.. before throwing any extra away. He assured me that the left side was fine, and yet here i am 5 months later and wondering.
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Betsy, i will definitely keep you in the loop. I pray that they don't have to do another flap. I want March to be here so badly to get on with this but i also hate wishing the time away! UGH.
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Hi Ladies,
I am probably going to be scheduling Stage 1 in late January-mid February. I am a little nervous reading all these problems. Would it be wiser to go to a PS in Milwaukee rather than NOLA. This is going to be a huge financial sacrifice for my husband and I as NOLA would be out of network. The complications would make it even more expensive. We will be borrowing money from family members to make it to NOLA plus spending all of our savings, tax returns,etc. so we won't have any for problems which may arise. What do you think?
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Caitlin, please do not let us discourage you from going to NOLA. My problem stemmed from my local PS and my breast recon failing from 10 years ago. NOLA docs were dealing with a huge problem on my end and I knew as well as my Dr. that i would have some issues. I had radiated skin and many infections before going to NOLA. Also, there are Tons of girls on this board and not that haven't had any issues at all!!!! I know it is hard to do when you have no money. I am right there with you. I am knee deep in credit card debt and have 4 young children. I have borrowed from my parents. I know though that the docs in Illinois couldn't have begun to get as far as my NOLA doc has. Plus the care you get is impecable!
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Caitlin... I am just having a low moment... The docs in NOLA have addressed all of my issues... Also, I fell the day after I was released from the hospital (passed out in the shower) and my friend caught me but when I came to I was on the bathroom floor and had sort of landed on the left side..and was bleeding from the left drain. Of course, I have wondered all this time, if I damaged something. I think I am more the exception than the rule.. and yes, there are women with complications in addition to me, but I think the NOLA docs are more apt to be able to address the issues. No surgery comes without risks. I do not regret going to NOLA for a minute, and certainly don't think another doctor could have done better... Its just luck of the draw. As Michelle mentioned, she had issues going in...
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Caitlin - I just posted on your other thread. If the cost is a hardship be upfront about it when you talk to the Center. There are financial forms that you can fill out. There can be complications and issues no matter where you go but I feel these docs gave me the best chance of a good outcome. And if there is a problem I also feel these are the best docs to handle it. I am very happy I choose to go to NOLA.
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Caitlin -- I have to admit that I am one of the guilty ones who had ZERO issues with her Stage 1 (unilateral), other than recovering from a surgery. Stage 2 was harder, but I am healing more rapidly and there still (sorry gang) are no rejection issues. Just me whining about I don't like the nipple that is there -- and everyone has told me it takes time, but I am one of those really impatient types! These NOLA doctors are the best! THE best. When I needed open heart surgery, I figured I needed to take my carcass to the #1 Heart Center in the country and that's what I did. Don't think any other PS can carry a candle to these guys -- for skill, for heart, for 'getting' what we women who are/have wrestled with the breast cancer demon need. So, go there. See what a difference you will find in every aspect of care. Theirs is the standard that all hospitals and clinics SHOULD aspire to. I speak from experience having unfortunately spent too large a percent of my life in them! Remember, YOU always have the go/no-go decision. If it isn't right for you, don't have it done. No harm, no foul. And I would encourage you to go back through some of the pages to read the joy from those who have completed their process and offer such support to those of us in the midst. This is not a procedure for the faint-at-heart and does require your commitment, but, in the end, for me to have a breast of my own tissue that looks mostly like it has always been there, feels warm, jiggles, bounces when I exercise. THAT peace of mind is priceless! Write down lotsa questions, ask to speak to staff ahead of your visit -- they are honest and forthcoming. A decision only you can make, but I can tell you, I will never look back with regret, regardless of cost, inconvenience, time, distance ... never!
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Well said Celtic!
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Agreed. Celtic sums it up perfectly. I thought I would add something more, but really cannot say it any better.
You are all in my thoughts daily, even though I am not posting often. Have been so busy, like most everyone else, with the holidays, kids home, etc. And now getting ready for a long trip abroad. But I try to check the board every day to keep up with everyone's progress and to send up my prayers and well wishes.
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Caitlin: I think Celtic spoke for all of us. None of us can promise you that there will be no complications but we can promise you the ultimate in care and expertise. Financially, it sounds like it will be quite the hardship -- don't hesitate to talk to the Center about it. They will do all they can to help make it possible. Good luck with your decision!
DJWeinstein: After Stage 1 I used a leather fanny pack to hold my hip drains. I'm not a fanny pack person normally but I kicked myself when I forgot to bring it when I returned for Stage 2B. Whereas I would never wear the blue drain holder they give you at the hospital on the OUTSIDE of any of my clothing, the fanny pack performed the same duties and was easily acceptable to wear outside my clothing.
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DJ... I used the pain pump bag and slung it over my shoulder... It looked like a small black purse... One of the nurses had suggested it for my first surgery... It worked well.
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Caitlin, I had no complications, so this does occur!
Locally, I had no options that were sounding good to me, I went to 2 PS and both essentially told me to lower my expectations. That my previous breast reduction and the rads I would be having would mess things up. NOLA docs found none of these things to be an issue. I didn't have enough fat in one spot, so started out with 4 flaps (front and back) rather that two. I felt after 2 surgeries there were still some things I wanted adjusted (liek a million little things) and I went back and all were covered.
Anyway, the most important reason to go to NOLA is actually not that everything may go right, which it probably will. Sometimes things go a bit sideways, and the NOLA docs will fly you back and address it.
Betsy, I would call them up and keep calling or emailing until you get a response. I had to do this a few times. Never nasty, just very persistent. Don't wait anymore. It is bothering you. Call! Let us know what they say...
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I also used the pain pump bags to hold the drains!
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I will call tomorrow... good suggestion. I was trying to be "patient" and wait for the "tincture of time" to pass... but it has been 2 months now (post stage II0 and I don't see improvement... maybe the opposite. Of course, I have less swelling so maybe it is just becoming more obvious. AND the breast was half firm going into stage II and maybe only 1/3 firm now. I know that is improvement, but the distortion is obvious to me, and I am hoping my latest pictures will show Dr D what I am dealing with and why I am worried... and not worried if I needed another surgery, but worried what they would do to fix it.
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Hi, ladies, check out Dr. Marga's site--I'm the Mermaid of the Month!
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YAY Anne.. I just read your story. You are a woman after my own heart... Congrats for being this month's mermaid!!
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Go Anne...Great story....! Inspiration for many who will read it I am sure!
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