NOLA in September?
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Yes I am sure...LOL! But I thought the same thing! They are REALLY stuck in there. You know what...Sandy's pics totally made me cry. I knew I wanted to go to NOLA since 1999. But seeing how they were able to fix her when she had started some place else gave me so much hope that they could work miracles on me too. I knew I'd have more scarring because I didn't have skin sparring or immediate recon. When I saw her pics it was just another reason I knew I was making the very best choice.
JJ~responsibility stinks...LOL! Now we are even, since I saw yours! When I met with the group of ladies I had been chatting with online the night before my stage 1, we went into the bathroom and did a show and tell. It was so cool! I cried again when I saw the results. I tell you, this year has made me a big bawl baby of gratitude!
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Trishia
Your pictures are so beautiful! YOUR pictures are sending me straight to NOLA. I will be talking to LIz in the morning to finalize my date!!!! I will post here to be put on the offical list. Thank you for posting the pictures. It is true "A picture is worth a 1000 words".
Thank you to all of you. I sure hope someone on the boards will be in NOLA when I am.
Bettye
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A friend of mine is trying to talk me into a belly-button piercing! I'd always said, "If I were twenty years younger and had a flat stomach..." Well, I've got the flat belly now, but I'm not so sure I want to rock a piercing. My DH kinda liked the idea, though...
Any of y'all got one?
Anne
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I need to go look at Sandy's again....I remember when she did the thermal grafting? I think I had just gotten the TimTam clearance and honestly haven't been on again until today.
Ok so my CDM supply is still greateer than half.... but.....neighbors keep coming by(Where the Heck were they they other day? kidding!)....No the neighborhood assn pres lady.......huh huh.....I guess I was smoking crack last Oct after neighborhood night out....when everyone KNEW about my recent stage one-hey it was october-bc awareness month and I TOLD them....they couldn't believe then....point of this story...I volunteered to put red ribbons on mailboxes for christmas because I knew I'd be home post stage 2 in our little 65 house circle area....I actually did at least 10 or 15 AND she brought me fleurs! pretty red roses! How sweet! so of course she got CDM! I might have to order another case of coffee just to have...honestly it is a great token and if you order a case of 24 cans it comes to about 6 dollars a can w/ the shipping....and people LIKE it, it's something different....can you even tell that's in my new avatar?
Ok, keep me in the loop on tattoos....OMg if I showed up crbs would think I was a stalker. Dr. D said " So you'll have to come back and see me in a year. It takes one year for the scarring remodeling, blah blah blah.... You don't have to but no one ever does." And was headed down this total line of BS.......I just looked at him and said "That is not true, I know people come back to you." And his nurse sort of laughed and said the same.
Nordy you are funny...I probably DID sew mine all the way up a long time ago and then had to undo! did you get it properly on and displayed?
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Wow Bettye! Thank you SO much. That is seriously the best compliment anyone could ever give me. I'm sure that you will be able to hook up with soemone from here once you get your date!
Anne~hmmmm.....I always wanted one too. Now you have me thinking.
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I have my belly button pierced. I got it pierced about 7 years ago... I love it. For the last 2 years it is the only thing that made me feel feminine.
You can sort of see it in some of my Posted Pictures.
I love dangly rings best.
Pam
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WILD CHILD PAM!! I love it! lol how are you doing??? I thought of making my hip incision into a tattoo of a dangling belt! lol
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Trishia,
I'll come up to drink WA wines, and we'll go get our belly buttons pierced! Doesn't that sound like a hoot? Or maybe we can all meet in NOLA, and when others are getting tats, we can hire Donn to pierce us?
Anne
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Anne - I had my belly button pierced for about 7 years... I LOVED it. I would still have it as I wore it my entire first pregnancy - until the last two weeks. I took it out about 2 weeks before my due date and I think sometime during labor I developed an umbilical hernia. I was so confused because after I had my daughter I tried to get it back in and never could. Thank goodness I didn't push it through too hard since some of my intestine was in there!!!!! OMG, can you imagine? Anyway, it closed up because of that, because after I had my hernia repaired and healed I tried to put it back in... and it wouldn't go! I would totally re-pierce however because I was lucky enough to not get stretch marks... but my belly did stretch, so now I don't know if it would look as good??? SO, long story short - YES, I loved mine!
Maybe some of you will be there for tats in March???? Thinking I am going to see if Celeste can change my date to the 23, 24 or 25th... works better for my hubby's work schedule so that he can be home with the girls and less stress on his sis.
Okay, so, I totally lost my passwords and all of that for Timtam's site... guess maybe I need to PM her!
Oh, and one more thing... I found this phytoestrogen lotion at Whole Foods that I have been using for the past 5 days... It is wonderful. I can't even tell you how much it helped with moods (no more sporadic bawl baby sessions), and decreased hot flashes. I am using just a small amount once a day so I am sold on it. I have not yet informed my breast onc, mainly because when I talked to him about it before, he was like, "Well, the natural remedies are not monitored by the FDA...". Okay, is it just me or is the FDA far from perfect? I figure these remedies have been used for hundreds of years in Asian cultures and Native Americans... I would rather use than some synthetic hormone... AND after all, I was triple negative... AND, for the safety and sanity of everyone around me - I think a little phytoestrogen replacement may be optimal...
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Oh my gosh! I have to totally get Sandy online here right away! Her head is going to swell up as big as her new nipples, once she hears that her breasts are so beautiful that they make men's eyes bug out and women cry!
I really have got to figure out how to get on this Timtam site. I have to see these photos!
Happy holidays to all you great gals. It sounds like lots of you have gotten fantastic early Christmas blessings!
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PS - Tricia, I will drop the kids and hubby off at the sis-in-laws and head over to be the designated driver for the wine tasting! If enough people came up, we could just rent a big old van... - the Bodacious Tata Bus. Maybe you could host a, um... what is the name of the company that you host parties for? Sorry (okay, maybe the lotion isn't helping with the memory)!
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OH, and ONE more thing... (good heavens, you must be saying, "We have had enough of you Nordy!") Anyone watch "The Santa Clause" (1, 2 or 3) w/Tim Allen? His character's name is Scott Sullivan... so if any of you have Dr. S and feel like you have been visited by Santa this year...
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Anne, come on over!!! We will have WAY too much fun. I have tattoo I want Donn to do to cover a scar on the back of my neck the next time I am down there. So we'll drink wine and get pierced up here! And Nordy can drive us! Although I have a teenage boy who will drive us around for tip money! My Expedition seats 7. If we need more room than that, we'll just hire a limo!!
Nordy, I am with on the natual route. I FINALLY had a Dr. agree with me that I would be able to use natual estrogen once I go into menopause. Even with ER+ cancer. I've had hormones for the past 17 years. You have to find what works for you and what resonates in your gut. There are many alternative treatments that work well for some. It's being able to combine them with western medicine and western medicine docs that seem to be the issue.
Minnesota, do a search for Tim Tam and PM her with a request for access to her site.
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Minn cracked me up with (referring to Sandy) "her head will be as big as her new nipples"!!!! LOL....
Belly button piercing??? Hmmmmmm. This new flat tummy has opened up a whole new world of possibilities!!!! Never would have considered it before.... But wouldn't it look good with a bikini bottom?
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So you are going to Be sporting JUST a Bikini Bottom Spring? Way to go girl!
LOL
Pam
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Not sure I would exit my bedroom with that outfit on Pam!!!
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So I do a search for Timtam, but just get other people posting about it. Any suggestions from anyone?
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Minnestoa,
Go to the member's list and do a search, send her a pm. She will send you all the info to get on.
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Springtime,
Put me on the list for Feb. 2. in NOLA with Dr. D. I will be having stage 1 delayed diep on left and immediate diep on right. I can't believe I'm really doing this. Thanks to all you wonderful ladies! I could not have made this journey with everyone of you.
Bettye
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Welcome Betty,
It's an amazing process. You wont' believe your good fortune. My husband and I have found ourselves constantly coming back to the beleif that it is just plain wrong that all women with breast cancer aren't told that this option exists. This group got me through all my jitters and kept me from backing out in those fearful last moments. You will find the same solace here if you need it.
Best,
T
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So, moving right along . . . . when do we schedule stage 2, lol? Is it three months usually? Dr. M didn't mention it at all.
T
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Hi Teel!
I had Dr. M and I did Stage 2 after 3 months. I was so proud of you crusing the halls so much thru Stage 1! You will find Stage 2 so much easier. GIve yourself as much time as you need to heal....take your time. I didn't even get to see her after surgery since she had to leave for Chicago...So, I am still wondering what exactly she did to me...lol Hope each day finds you closer to feeling better and better!!
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Wow, I was making peanut brittle last night and missed out on a major head-swelling opportunity! I am so glad that my photos helped you ladies. When I first started posting here, I was one of the only ones who'd been to NOLA, and didn't have much support as I raved about what Dr. DellaCroce had done for me. I found out about him thanks to the FORCE board, but I don't really post there much because I'm not BRCA+ and don't really feel like part of the group.
The funny thing is, I have continued to have small revisions because I'm pushing for perfection and Dr. D has allowed me to do so. I still have one little issue I want addressed and I feel like I've become a perpetual patient, but he's a perfectionist too. I obviously found the right doctor! If I'd started with him, I would have been done two years ago, but I have lingering issues caused by my first surgeon. I'm hoping a bit of Alloderm in a month or two will do the trick and I can then move on to having my tattoos re-done. Maybe I can do that at the same time as a bunch of you, so I could meet you. I would love that!
These nips were only supposed to make one guy's eyes bug out, and Trishia, sorry but it was not intended to be YOUR husband! My DH made a comment before I had them re-done and said that after our nip reconstruction, we should all be going down to the beach showing them off in tank tops, making guys fall off their bikes! I crack up every time I think of that, because right after my first nip surgery, I was at Home Depot in a tank top and jacket, but still braless because it was soon after surgery. I couldn't tell because I didn't feel anything, but the jacket had moved to the sides and some young guy was apparently enjoying the view. Apparently he was staring and I hadn't even noticed him, but my husband observed what was going on. I was so shy when I was younger that this is all too funny to me.
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Sandy...it wasn't my husband is was Spring's! LOL! I was just the bawl baby when I saw your before and after pics and the was BEFORE the new fab nips!!!
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Oh I am excited I got to talk to Nip Girl and see her beautiful Nips. (Boy if that didn't sound odd) Thank you also for being the guinea pig for how to make nipples I am sure I will benefit from it
I am 37 days out from surgery and I am nervous as can be. I am nervous about the surgery but I really, really feel like I am in the best hands possible.
Trishia~ WOW You look incredible!! I can't wait to add my pictures to tim-tam's site next month. I think it will really help others who are considering going to NOLA. You do not see a lot of pictures of Hip or SGap. I have no problem posting my picture or sending it to others (Nip Girl knows). I have already told my oncologist office that I will be back after surgery to flash them...lol... Which BTW, before BC I would NEVER think of doing this. NOW it is another story.
Ready for the Holidays (okay I am getting there) and my trip to NOLA.
CCBaby& Teel, Sassie and everyone else who just had surgery I hope you are recovering well.
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Oh my mistake! I am so stressed this morning
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Dag, I was hoping Trisha wouldn't rat me out! It was my DH but I had to get him on the same page as me....
Sometimes, when pursuing this route, you have a lot of convincing to do. First of yourself, that is the easiest step, Then your DH. Then all the local docs, who are freaked out that you are doing reconstruction in Louisiana, and New Orleans, of all places. The pictures help, A LOT! Plus all the testimonials here, but it would be hard to get your DH or docs to read though all this!!!
My Oncology office is now referring women there, and they will ask first and then put them in contact with me. Seeing, and feeling, is believing! My ONC said, "Can I touch them?" (this was after just Phase 1!) They are used to the look and feel of implants. And we look and feel like the real McCoy.
We are just blessed to have found out about this. The pics do help!
To get access to TimTam's pic forum. See top right of page. Under where it says "Welcome" you will see a link called "Member list". You search in here for TimTam and ask her for permission to see her site, and she will get back to you in a PM. That is the way it is done!
Minn, let me know if you have any more issues.
Sandy NO STRESS!!!!
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Springtime - Thanks for the detailed instructions re: TimTam, I will try again now. And I always have issues!
I love your story and all the stories other women have about doctor's visits post-DIEP. Isn't it great to be the center of attention and have all these docs looking at your breasts in amazement?! Talk about turning from an ugly duckling into a swan! No wonder we all become flashers!
Teel - that's exactly why I did that video and that CNN article - all women have a right to know what's available now! And to think I only told a handful of people I even had cancer, mastectomy, and recon! Boy have I come out of the closet!
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I agree Spring. It really does help to have the pictures to share. It's why I plaster mine everywhere I can.
Okay...I am having a sad moment. Last month when we went to UW to see the genetic doc, they officially tested Tre for the p53 mutation. They did for a couple fo reasons, the main one being that my blood was 7 days old when the lab got it. (Yet ANOTHER eff up by Children's Hosptial). So,even though logically I knew he would turn up postiive, there was this glimmer of hope that maybe, just maybe, he wouldn't have it and that it was all just a fluke. That he wouldn't have to worry about making the tough decisions like whether or not to have children. I know it was a long shot. But hell, both of us being here is a long shot. As a mother, I couldn't help but hope.
Today UW called and he does have the mutation. I don't know why it is making me cry again. We've been treating him like he's had it since I got my official dx last year. But I can't help it. I am sad. And he has to have an MRI on his shoulder and is having all this damn joint pain. He had an Xray on it last week and the radiologist said he needed an MRI. I'm waiting for the results to be faxed to me. It sounds like more of an injury/ortho issue from football, but it still makes me nervous. I swear it is from all the chemo he had. Not that it holds him back. It doesn't at all. But as a parent, it just breaks my heart.
The genetics counselor thinks my dad should be tested, even though his family doesn't present for Li Fraumeni. My mom tested negative. I don't know. There are so many variables to genetic testing. My dad will do whatever I ask him to do. He's the greatest dad ever. But I think that if he does turn up positive, then he will be racked with guilt. Which is ridiculous! I don't feel guilty about Tre....no more than I feel guilty about him having blue eyes. I can't control genetics. But I know my dad. He is the ULTIMATE protector. To this day I tell people if they mess with me, that my daddy will kick their ass! Not to mention that if he does turn up positive that we'd have to hide it from my sister. She would NOT be able to deal with it. At all. She is good about breast screening since she has a high family risk without a genetic dx. On the plus side, if he was positive, it would be a HUGE gift of positive information for the Li Fraumeni community, because he is 57 and has never had a cancer.
I have always felt that I was the proband. (It started with me). But the genetics people think that would be extremely rare. I don't know why I feel that, but I just do. And when it comes to cancer, my gut has always been right. The genetics counselor also said that there is possiblity that I have both Li Fraumeni and BRCA because both my mom and my grandmother had cancer. Now THAT would suck!!! LOL! I don't think so though.
Anyway, Tre has his MRI on Monday and I have my baseline PET on Tuesday. It will be a nervous week of waiting for results. I'm sure it will be fine. We have been awesome for a LONG time. I'm just having a moment.
Thanks for letting me vent.
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Gosh Today has been absolutely wonderful!
Very productive. Ugg! Insurance people finally corrected and COVERED an error from June 16th-6 MOS AGO! seroma cellutis I was treated for by another MD because mine was out of town in the old lumpectomy rads site....Uggggg that was one of the final straws that helped PUSH me into PBM....continued problems and potential problems! I have been disputing full charges they were refusing to cover -the sono, aspiration, antibiotics, follow up, treatments, etc for 6 mos now! and finally they fixed it! I only owe 26 dollars....YAY! perhaps it was me saying "I will NOT BE paying for this when for the third time I asked for an itemization. It IS covered and WAS emergent. I avoided a hospitalization and more severe case of lymphedema/cellulitis by having this seen and dealt with promptly. Also finally made contact w/ the Hartford disability ins analyst......I have documented EVERYTHING to death, they assured me I didn't need to do anything the day before stage 2 and here I was this am 11 days into disability period w/ nothing except a phone call from someone last Monday(4 days post op) asking when I'd 'be returning to work'? I have a 4 week 10 lb weight restriction and specific NO WORK x 3 weeks faxed from Dr. D- because my job is physical......Oh man I let her have it as calm and matter of factly as possible and voila, deposit today and tomorrow. I know plenty of people abuse this stuff but for the love of God....I dotted every i crossed every t and pay for my benefits FORK IT OVER!
But the best part...I went to see my lymphedema/physical therapist....not sure what she would do because I'm in pretty good shape....the new breasts/lift did exactly as Dr. D said......the lift and contouring which almost produced a small reduction virtually eliminated the dependent edema that was the ongoing problem in the L near cleavage and I don't see the fluid accumulating or the orange peel issue on the bottoms of the breasts....full C small D is PLENTY...I didn't WANT to stay a DD. ANYHOO...My LE therapist was VERY impressed couldn't believe how good all looked and was cracking up at the whole set up w/ drains/dominatrix, etc. You know honestly this is a LOT to be responsible for for the non-medical, non sophisticated patient. Dr. D, et al do have to do some major screening because trust me there is a LOT to manage once we leave the hospital and this is coming from a 20 yr plus RN.....Not everyone is competent to handle all this stuff responsibly.....they have to make that assessment and I think Liz does a very good job of doing all that by phone.
TEEL- I agree not everyone does know...I met a lady this am who was having lymphedema therapy who had a partial mastectomy for DCIS who apparently had wanted bilateral mastectomy and recon. Her physician had told her no. I have absolutely NO idea how the physician convinced this woman it wasn't her choice! Oh man...that sort of stuff gets me going!...She wanted to know all about mine, why I went to NOLA, etc.......We will be talking again, she's buying the K. Steligo book, and has the CRBS website info to study.
Sandy I have a confession to make I went back and looked at your breasts again too on Tim Tam's site and I don't think I left a comment. But I am now! again as I did over the summer, and they are lovely. I agree.......I am SOOOO glad I didn't get the circles I would have had if I had DIEP done here....SO much diffeernce! God willing I think 2 surgeries will do it for me and trust me (yes I may even post in a month or so on Tim Tam when the black and blue goes away) BUT things look REALLY good and I'm only 11 days post op. No I didn't have a problem someone else screwed up on except some goofiness of the breast that had been lumpectomied and irradiated. The other breast has a very negligible scar from small partial mastect from the area of ADH so negligible Dr. D opted to leave alone said it would probably create more problem if he tried to do anything w/ it. My point......SO glad I went w/ these guys from the get go...because truly things appear as if I've had nothing but 'improvements'...plus the BENEFIT of lost worry! That's still the greatest!
ok, rambling again!
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