NOLA in September?
Comments
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btw.. will be around tomorrow at noonish if you want to call.
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Thanks for your thoughts dbdaze. I just wish I had logged on earlier this morning and been online.
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Will call x
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Joasta - There are no words to express how sorry I am for your loss. My prayers are with you.
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Louis13 and the rest of you wonderful women - No words can describe the pain I am feeling in my heart. But, I am so overwhelmed by your outpouring of support. You all continue to amaze me with your kindness. Louis13 - thank you so much for your post. Right now I am on auto-pilot and have come off to some as non-feeling. But I don't feel I have to prove my love for my son by being hysterical. My son knows how much I love him because like you and your son, we had a special relationship. He was with us on Thanksgiving being the clown he always is and the next day, he was gone. I showed my love to him on a daily basis as he did to me. My heart breaks but I know God has him in His arms loving him like I do.
I can honestly say that you are all truly AMAZING! You have taken time out to post to me while you are all dealing with your own issues and you make me cry because of your kindness. My prayer is that you all be blessed as you bless me!
I am not sure what I am going to do with my surgery. My son, Adam, would want me to finish it up and start the year new as we had discussed. Before I went on my first surgery, he had offered to be my caregiver. Haha - I told him he would have to see me naked and that would scar him for life. He was incredibly thoughtful and crazy too! We laughed a lot when together.
Again, thank you to all of you!!!! You are all special and I pray God's blessing over all of you!
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Louis13 - Like Laura, Dr S did a dermal graft to improve the projection of my nipples (after nipple sparing surgery). I had a stage 2b because of complications with my tummy tuck during Stage 2 (a). I had a hematoma and then a bursa (basically a cavity filled with scar tissue) that made it look like I was carrying a small football under my shirt! So, NOLA had me come back to fix it and when I did both Dr S and I felt that my initial graft in my nipples had lost some of its volume and that he thought redoing would do the trick. He made a small incision in the areola which I believe allowed him to fill in behind the nipple. For whatever reason both times the scar has not been at all noticable once the scab fell off. The results have been beautiful...and as I said, I always had very erect nipples (a slight elevation or decrease in temperature would "set them off", so now that they are always like that it doesn't seem unnatural.) If you don't want them fully erect, I'm sure Dr D can do it to your specifications. Just let him know what you want.
Laura, that's interesting that he reshaped your areola. Can you see a scar around it or did it heal and look perfectly natural? That tissue and skin seems to react differently (better) on me. I haven't looked at the shape of mine - yet. Since I'm only a month out from Stage 2b, I feel I need to give it more time to know the final product and I want to withhold judgement until I'm done with the shape-shifting process of healing.
For DIEP women/ or Flap who had a tummy tuck - how long did it take for your swelling to go down in your stomach? After my initial tuck I had the bursa so I never had a flat stomach. After the revision I had an immediate flat stomach, but I feel swollen (and I didn't have the can't stand up straight post surgery with 2B.) Also, I am still the exact same size I was before starting this whole process. My fat is now in different areas but I am still wearing the same size. I am wondering if that will be the case or if I will need to get at least a few new clothes for my new body. It is a bit of a disappointment that I have no excuse to go shopping!
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Kathryn... After my DIEP, my lower belly was super flat and the upper belly was more fatty, but my side view was not bulgie... After the revision and lipo, its hard to say it is any different, but it has only been 2 weeks for me, and I am still swollen and bruised... As Dr D said to me, he can only remoe surface fat; he can't remoe fat that is intertwined with me organs... He said many women expect to come out of surgery and all their fat is gone, which can't happen... I think after my swelling goes down, and I expect it to be a few weeks, I will then need to lose weight to get the result I want.... But certainly after stage I, my profile was slimmer... I also had no butt due to hip flaps, but he has now replaced that...
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Joasta,
Oh my goodness I just read this and I thought I misread it. I want to say I am so sorry to hear of your son, and I wish you strength and peace in the days ahead.
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Joasta,
I am so sorry. You grieve how you grieve-period. There is no right way. I think that many of us here have spent time thinking about dying. I know that I have. The one thing that pained me the most was to think about my passing hurting those who love me. I'm sure that your son is your champion in heaven, still wanting the best for you.
I'm so very very sorry. This really sucks.
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Joasta, I have no words. Peace be with you.
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Back from UK/Ireland and skimmed what I missed. Hope everyone had a wonderful Thanksgiving!
Kathy, sorry you had to delay but glad you were able to reschedule.
Michelle, safe travels tomorrow.
Healing vibes to all having surgery this week and those in recovery.
Someone posted about how these boards have helped and even though they don't post a lot they are strengthened by reading and I have to wholeheartedly agree. I appreciate so much all of your stories. Thank you.
I AM NERVOUS. (c: I leave for NOLA on Sunday and will be there until 12/15. I would love to meet anyone who is there at the same time.
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Joasta - I'm so, so sorry. Words fail me as well. Take all the time you need - we'll be here to support you when you pick this journey up again. Take care.
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Rosemary - so sorry to hear things have been tough for you too - I hate that you are dealing with so much and yet another surgery. Will be thinking about you this week and hoping all goes smoothly - as soon as I know when I will be back in Brooklyn (probably late Jan or early Feb) I will let you know and stop by to see you! Good luck to you and to Momma2four!
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Kathryn - to answer your question from a couple pages back - I had nipple sparing too and my color has definitely changed - it's not the same color as the rest of the breast, it is darker but it has a greyish hue to it that I'm not too fond of. I bet I am the only person who would notice but I do. I'm thinking about getting tattoos done but waiting until I'm 6 months out from my stage 2 so I can hopefully tell if I need more revisions (hoping not) I talked to Vinny about tattoo'ing spared nipples and he said it was definitely something he could do. He said he tattoo'ed over non-post-surgery nipples when people just wanted them darker and the biggest issue was the sensitivity. We should not have that issue - I feel some stuff but it's defintely more dull than before.
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KathrynLA - I am 6 weeks out today from my Stage 2 and I can see the scar around the nipples. It is very faint and since it lies perfectly between the aroela and breast skin I really don't think I'll notice it at all once it is completely healed. My nipples seem to be the same color that they always were - but now I'm watching closely to make sure!
I'm glad to hear you are doing well, hopefully that last bit of swelling will be gone soon. They did say up to 18 months for it all to be gone though. I think I'll be along the lines of the 12 - 18 month window, I seem to "unswell" slowly. I'm still wearing the same size also.
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Joasta - You seem to be doing incredibly well to me. No one should be passing judgement on you as you deal with the loss of your son. Words seem so trite at times like this. I can't imagine the deep pain and loss that you are feeling. I wish you full healing of body and spirit. Sending cyber hugs.
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hello. i'm new to this forum and have spent a good 6 hours reading and searching throughout the day to gain more info. i apologize for jumping in right here b/c i know there are later posts and it sounds like you (bdavis) have recently had surgery again. because somebody else replied to something i posted earlier today and referred me to your posts, i'm just jumping in her and hoping to connect with you or others who've had similar experiences (and btw, hope the surgery went well).
my left breast seems to be almost entirely composed of necrodic tissue. my original surgery was in march and i had surgery in september which attempted to correct the necrotic area with the results being actually worse now. i'm supposed to be getting surgery again in a few weeks (lipo, injections around the necrotic tissue, and nipples) but feel very in the dark about what i'm doing or what to expect. i know that waiting or 2nd opinions are both suggestions that may end up making more sense but i make hardly any money, am on my own, and have massive debt so i was hoping to get things done before the new year starts for insurance purposes and can't easily justify airfare or hotels to fly around for 2nd opinions. however, i am interested to get feedback if some of you are reading this and thinking that you've been down this road and have regrets for not stopping sooner. if you've got any words of wisdom, suggestions, etc., i would be most grateful.
thanks
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Onehardrock, Welcome, glad you posted. who are your docs? Are you at NOLA?
Somebody way back (Was it you, Louis13?) a while asked about sensation in your "other" side and thinking of opting not to mess with nipple and lift. If you still have sensation there, this makes total sense ot me. The more it is messed with, the less sensation you will have. If you're keeping your Other breast, and sensation is important to you, I can see just leaving it alone, as long as it looks sorta like the other one and you are happy with it! The more surgery I had, the less feelng I had. Just saying!!
Adey, it's coming soon!!!! Soon you will be on "the other side"!!!
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Onehardrock... I had my surgery in July, and then was back down in NOLA in August and kept expressing concern to Dr D about my left breast being firm, like an unripened grapefruit, not a walnut... He said not to worry... I went back down to NOLA in November for stage II and of course was stil concerned about the left breast... HALF of the left breast was firm. I was convinced it was necrotic, all of it... I was sure I was going to lose half the breast. BUT... I got there and Dr D said it was just still swollen. I am now two weeks post op and it is still firm, but not like it was... And it is and should be still swollen.
SO... what do I think about travelling?? If you are going to the doctor who can do what needs to be done, then travel. I felt I could get what I needed here where I live, and that says a lot since I live in NJ, by NYC and Philly. And the expense is there, but there are ways around some of it... American Cancer Society can help with flights, Hope Lodge, Breastoration. I would submit paperwork and photos and see what they say... BUT it is December this week, so it would be unlikely to fit you in this year - my guess...
Where do you live? And love your screen name, but hopefully you won't be a hard rock for long.
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Onehardrock - Welcome ! I had a unilateral DIEP that required 5 revisions - big problems with symmetry, fat necrosis etc. I finally got 2nd and 3rd opinions and jumped ship - found a new local plastic surgeon. In retrospect I should have done it MUCH sooner. Just my personal opinion - if you don't feel really comfortable with what is being proposed or if you no longer trust your original surgeon - don't go ahead with the surgery. I decided to do my contralateral side and traveled to New Orleans to have it done. I wanted to do everything I could to prevent a repeat of the experience I had with my DIEP. In retrospect I feel I should have traveled to New Orleans when I realied there were problems with the DIEP.
One very good place you can post to get ideas is:
http://members.boardhost.com/plastic/index.html
Dr. DellaCroce, one of the NOLA plastic surgeons, runs this board and will respond to your question. I absolutely would do this.
Also where are you located? Many of us have really researched microvascular surgeons and know who are considered the best across the country. There may be someone near you that you can see for a 2nd opinion. I personally would be concerned with a plastic surgeon trying to fix massive fat necrosis with lipo and injections around the necrotic tissue. Would another alternative be a new flap done by a new plastic surgeon? You may be able to schedule surgery with a new surgeon before the end of the year - if this is something you want I feel you should at least try to set it up. The paperback book "The Empowered Patient - How to get the right diagnosis, buy the cheapest drugs, and beat your insurance co, and get the best medical care every time" by Elizabeth Cohen helped me advocate for myself and fire Dr. Wrong and hire Dr. Right. I am sure other's will chime in.
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Onehardrock -- At the behest of my insurance company, I spent MONTHS seeking exper assistance for reconstruction at major cancer centers and it was a traumatic experience to say the least, to say nothing of lost time as I was seeking immediate reconstruction after mastectomy for unilateral cancer. Had the mastectomy locally based on the word of a NYC PS and in the end, he abandoned me. My last resort as a totally beaten and abject patient was to contact teh Center in NOLA ... and I haven't looked back since. The standard of care, the skills of the surgeons, the unambiguous plan for treatment and restoration are all well worth any expenditures -- we nearly went broke with the "experts" at the most prestigious cancer centers -- this is a standard unseen and unknown anywhere else in the USA, I am convinced. One skeptic's opinion. I am heading to NOLA for Stage 2 in December. I have no doubt at all, complete faith, that these PHYSICIANS will hlep me to be whole again. This isn't hype here -- these are real women who have been through hell ... and found that there is HOPE. Trust ... watch the videos on the website. Ask Dr. D questions on the breastcancer.org Ask the Doctor. Dr. D responds to EVERYONE even with his impossible schedule. Have hope ... the answer is out there. Keep reading ...
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Thanks to everyone who responded to my earlier questions...I don't get to check this site to often so it's taken me a while! And yes to everyone who will be there at the same time...please do come by and say hello! I have no idea how I'll be, but I'd love to meet as many of you as possible!
I do have a couple other questions for you all:
1) My surgery is in Jan, but I'm getting some pretty bad anxiety already (I feel like I have something sitting on my chest!) Did any of you experience this a month in advance?
2) Regarding what to pack--if I'm going to be in a compression garment (for hip flaps), how do you wear yoga pants (or any pants) over that? Wouldn't it be easier to wear a skirt? Perhaps I'm not clear on how long it is, but it's not making sense to me.
Thank you!!!
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Onehardrock, I just wanted to reiterate something Betsy said in case you passed over it. Many women have said that they submitted photos to NOLA (The Center For Restorative Breast Surgery ) for a preliminary consultation. The docs will review them and the Center will get back to you with their recommendations and what they propose to do for you. Other women go in person ahead of time, and others have their first contact with the docs the day before surgery. I would suggest calling the Center and finding out exactly how to get the ball rolling before you consider any investment. They will also immediately begin looking into your insurance and financial stuff. Good luck. Glad you came here...
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ddjweinstein - I just got a few pairs of inexpensive warm up type pants from Sports Authority - lose pants with a draw string at the waste. They fit over the compression garment and did not cling to it.
In terms of anxiety using this board helped since I was talking to women who had already gone through this and felt it went well. If there is anything that will make you more comfortable in terms of information or medication or how you are dealt with at the Center tell them. Because I had had quite a number of problematic previous reconstructive surgeries in my home town -there were things that I was concerned about and I also had some strong preferences in terms of some of the meds. I talked to the Center about the issues and they were so amazingly responsive and accommodating it made me feel good about the upcoming surgery. I felt that I was in good hands and I felt that they would respond to me as an individual. For me, it was very calming.
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Djweinstein, go to the Flex-Support website and look up #2018," compression girdle, above knee, hook and eye,black"....that is what you will be in when you wake up from surgery! Along with a stretchy black bra that closes in the front. Or you can go to the Marena site or the Design Veronique site and look at the Stage I abdominal compression garments. The garment( we "affectionately call the DOM-- short for Dominatrix-- name coined by Nordy...) has an open crotch. If you wear a skirt, you might feel uncomfortable without panties over the garment, whereas you might just go without if you wear pants. Your regular panties will fit fine over it. You don't want to put panties underneath because they will get crunched up and it is also too hard to remove the garment every time you need to pee. Many of us needed "help" (at the beginning) from someone to squish into the garment and get it all hooked up as it is pretty tight. Sweats, yoga pants, drawstring pjs-- anything with a loose or adjustable waist will be fine. You will have several drains and they will be in a pouch hanging from an elastic band around your waist ( or some other arrangement that you might prefer). Tops that are loose and long enough to cover the drains ( hip length shirts -- of any kind-- button down or big T's) are good .The bra has wide straps and is cut kind of high so will show out the top of anything low cut. Hope this helps. A month is a long time to be anxious. Maybe it will be a good distraction when you start getting your house, family etc, organized for your absence and for your convalescence.
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There were a few things that calmed me before Stage 1.
I was able to talk to another NOLA patient on the phone (a local plastic surgeon did her wound care and he put her in touch with me). It was very helpful to have that one on one conversation. The Center has a patient to patient program where they can put you in contact with another patient. I did not use that, but I would recommend it.
I read a LOT of this thread. In the weeks after I ended up reading the whole thing. Not everyone would have the patience or time, but soaking up all the NOLA experience and info I could was calming and reassuring to me. The details helped prepare me.
I had to make a lot of arrangements for the care of my children. In fact, I'm starting on a new chart tomorrow for my Stage 2 in a couple weeks. Getting that accomplished enough in advance reduced that area of stress.
Relaxation/visualization CDs/music help me. I plan to get over to my Cancer Support Community center a few times before I leave to listen to the pre-surgery CDs. I've had some practice and therapy in the past to deal with anxiety, so I had to hold fast to those tools I learned. Deep breathing, healthy eating, exercise, take care of the next thing (laundry, cleaning, etc so those things wouldn't be a source of stress), journaling, praying, meditating, talking with others, getting sleep, living in the moment (not ruminating on the What Ifs).
One Day at a Time. The Serenity Prayer:
God grant me the serenity to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Courage. Courage is fear that has said it's prayers. You can do it.
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leaving nyc at 5.30 bound for nola...
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Just landed in NOLA. Dumb question for u all....did u tip the driver? I would guess yes. Ugh...i amso scatter brained!
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Michelle - I had asked Katie that question and she said it wasn't necessary. But we always tipped a little and a little bit more when we had luggage. Thinking of you! I'm sure you will be updating us all in now time when you are through with your surgery!0
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The BEST thing that I bought before my surgery - Footie Pajamas from Target. They are just like the onesies that babies wear. I got a red one with feet that look like sock monkeys and a black one with feet that look like penguins.
Reasons these pyjamas are the BOMB!
They never got twisted, rolled up, or bunched up, cutting down on all of the shifting trying to find a comfortable position after the surgery.
They are nice and roomy, so drains fit comfortably inside.
They zip up the front, so nurses can check drains, incisions, etc.
(My public service announcement for the day)0
