NOLA in September?
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Dr. S is great!
Okay, I have formulated most of my letter to send off tomorrow. Fingers crossed that this works or it may get ugly.
Thank you Eve - you know those bozos have that information printed right in our benefits book and state how they "pride themselves" on providing care/reconstruction to women with cancer, and then they pull this kind of crap. Unbelievable. The lady from the DOL was not impressed.
I can't remember who asked if the US Dept. of Labor governs all self insured employers - to my knowledge - that answer is yes.
I can't believe the issue at the Hope Lodge. It was so quiet when I was there last year. Yes, you do need to complain. I am certain that the people in charge will not be happy.
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I can relate to Sheridangirls complaint about the hope lodge. It was that way last time we were here too. Kids everywhere, volunteers kids or what not. They were hogging up both computers, the couches, the tv in the dining room etc... Not noticing it yet this time too bad. One girl about 10 or so is here, and not a patient or with a guest.
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Just a note to let everyone know that I went to NOLA yesterday for my nipple tatooing and it went very well. Don was very nice and very professisonal and I didn't feel a thing. I dreaded it so bad and it was nothing like I thought but I am glad to have it behind me. Guess I am a graduate of the Breast Center now and it was a bitter sweet feeling. I will miss all of the wonderful people there but I am so happy to be done and have it all behind me. I even went up to the hospital to say goodbye to the nurses and a couple of my favorite were on duty! All in all it was a very exciting adventure for me even with all the pain and healing time! Good luck to all that are still in the process of completing all the steps of surgery and God Bless Us All!
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CONGRATULATIONS Chimama!!!!!!! Woop! You be done !!
I think that is horrible about Hope Lodge. The place was really quite the one night we stayed there long ago...
NORDY YOU ROCK. You are a woman with the courage of your convictions! I am so impressed with you. What a fighter. YOU GO GIRL!!! I am so glad you have an "advocate" so to speak in DOL. That hopefully will get their attention.
Chimama, if you really want to go back, you can get Dr. S to put 4 of those nipples on your back. LOL LOL LOL. eeeeeeee.
I get tattoo in December. I am nervous. I think I will feel some of it. Yikes.
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Hi Ladies, I am a past poster on this thread ,and Spring was so kind to add me to the Loooong list of Nola ladies even though I was a Charleston girl. Anyway, I just wanted to know about the tattooing. I know Donn does them in NOLA, but is there a difference between 3 D tattoos and just normal ones? I know what 3 D means, but not sure how it relates to the nips?
Good luck all of you just finished with surgery and those coming up. I am going for stage II Dec 3 with DR. Massey in SC.
Nordy, I feel your pain. Hang in there and don't give up. I think Sandy gave you some good advise.
Thanks,
Linda
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Dragonfly1976, Dbdaze
Thinking of you, sending you hugs.
Dragonfly- You are not missing much here in the Pacific Northwest. Rainy and gloomy- your in a much better place.
Laurie
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Linda, good luck on your surgery in Dec? Want to be added to the list above?
My take on the 3d vs regular tattoos. 3D tattoos, the surgeon does not build a nipple at all. The 3D part is that the tattoo is so skillfully done that it actually looks like there is a nipple there when there is not. It's like an optical illusion. The regular tattooing is when there is a nipple is surgically built, and the tattoo is pigment that either enhances the areola that was left to build the nipple (I have one like this, so my areola is not round and needs help to match the other side, ha) or the areaola was not there at all and so the tattooing is done to simulate the areola.
Anybody else, if I messed this up, fill us in. That is my take anyway!
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I met with Dr S today, all marked up. I opted out of the nipples. I hope I don't regret this in the morning?
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Most Hope Lodges have a rule that No ONE under age 16 can be there. My 15 year old nephew came to visit me with his Mom in Charleston, and we had to sit outside on the "veranda"! Definitley write a letter to the NOLA Lodge's director, and let her/him know you expect a response.
Nordy--good luck.
Wow, if my cervical spine had behaved itself, I'd be getting on a plane to NOLA in the morning. Things happen for a reason, though, so I may figure it all out--or not. But I tell ya. this neck/arm pain is WAY worse than anythng Marga ever inflicted on me! (And, I DID manage to get my MRI approved after the fact and a detailed letter.)
Anne
Anne
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Well I can say I just went down to get ice and there was girls probably 10-12 running around, in and out of the kitchen, the library. One girl was sleeping on the couch in the lobby! So stinking annoying!!! They are NOT patients/guests of patients. How do we contact the director?
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Dragon, Did Dr S offer nipple sparing? Is that what you declined? When I had stage 1, I had never even heard of nipple sparing, so when he offered it, I freaked out. He stayed calm and explained it, then marked me up for the next day with a "NS?" on my breasts. It sent both my dh and I into a spin just thinking about it. It felt like the biggest decision on the planet, and one which had to be decided in such a short time. I'm glad you have a few hours to think it through, to check your heart. Fortunately, Dr S doesn't need to know anything definitively until the moment you go into surgery. At this last surgery, 2 weeks ago, he offered to do abdominal plication, in addition to my other things. Again, we had to think it through, and he told us to get back with him in the morning. I declined plication, but I did the other ideas.
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Spring, I am anxious but eager for my stage II. Gee, I would love to be added to your list. Dec. 3rd with Dr. Massey in Charleston. Thanks so much. Is the 3rd YOUR son's birthday? Thanks too for your explanation of the 3D tattooing vs regular. I thought that might be it, but I just figured that everyone got nipples. Not sure that will happen this time as I need some tweaking and might have to go back next year for the "twist!" By the way, love the beautiful horse you have.
Dragon, good luck tomorrow.
Dbdaze, hope you are feeling OK and will be up and about soon. ((((( ))))
Anne, So sorry about tomorrow. Get that arm and neck better and you'll be on your way in no time. I hope you don't have to stuff a Turkey.
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Dragonfly, I know it's your decision, but I chose not to have nipples my first 2 reconstruction attempts. I have them now and it is HUGE DIFFERENCE! I've had it both ways and there is no comparison is how you feel. It's like the bow on the package. It really does make a difference.
Kick their every loving A$$ES Nordy!
Yes Spring, you read right! Not quite certified yet! Took the training and am now teaching so that I can send in my tape to be certified! What a change!!!
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Dragon - there is the GERM factor at the Hope Lodge, which is why there are not supposed to be a bunch of people there - specifically children/teens. The only exception is if they are in treatment. You need to get a hold of the director and complain. Well... maybe AFTER your surgery! Good luck tomorrow... if you check this in the AM - think about nipples again... I know you don't have a boyfriend now but there will come a day when you do. And my husband loves that I have nipples again - even if they don't react, it is a visual thing for him. But even if you decide not to do them now - you can always add them on in the future!
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KC - I am going to answer for Dragon since she has surgery in the AM - she is stage 2 reconstruction - so it is not nipple sparing!
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Good Luck today Dragon! While I do love having nips back.
If you dont get them done today- that is fine.
If you change your mind you can add them later!
Thats terrible to hear that about Hope Lodge. I hope you do all let them know what is going on & it is fixed right away.
DBdaze- I hope you are feeling good today.
Wow- no one on the list now until Dec 2nd.
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Good morning ladies, heading to the center at 8:30 (7 now) My nipples have been long gone!! Lol. I think my main hang up is I hear of them not turning out, going flat, not being even etc... So I'm really nervous. I don't have money to come back again if they don't work out 100%. So I am unsure. He said I can come back later, they are done in office and it's no problem to add them 6 months from now. I wish I'd heard more good stories or about none needing revisions first. See how I'm on the fence here!! Grrrr....The last little detail and I can't decide.
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Also, I don't know who to contact about the Hope Lodge. Mainly it's just volunteers here when I'm here?
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I couldn't find a name of a director on the NOLA Hope Lodge website. But go ask a volunteer the name of who's in charge and when they'll be in the office. You don't have to say a word about why. Or say you have a private issue to discuss. Don't hang out and stew. You desreve quiet time, and they're supposed to ensure you got it!
Anne
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DBdaze - hope you are doing well.
Dragonfly, thinking of you this morning. Can't wait to hear how it goes. I am getting a bit nervous thinking about Stage 2.
My uterus sonogram came out fine. Thank heavens. Had to have my hip aspirated yesterday and even though my hands were sweating from fear it did not hurt. I am still not feeling the greatest in the world which I thought by now I would. Mornings start out pretty good but evenings are still hard. My breast seem so sensitve to everything. I must change bras 3 times a day. Just wondering if I should go ahead with my planned Stage 2? Maybe I should take a break and give myself more healing time.
On the plus side of this. My breast are pretty darn awesome looking. I can't wait to feel well enough to enjoy them. Just wish I felt pain free and was out of compression garments. Laura told me to wear it at least another week.
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Regarding Hope Lodge, I would contact Susan McMillan, Hope Lodge associate director (who I believe is also a Center alum) Susan.McMillan@cancer.org or 504-219-2200.
Shouldn't be a "community center" there
Marcia
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Marcia~ Susan is an alum. of the center
. I hope they get it fixed because when I was there it was quiet, I was the loud one. 0 -
Dragonfly, I spoke in length to Angel Strange at 615-739-6326 about the issues I had. She is located in TN and is in charge of the NOLA Hope Lodge. The director at the lodge is Robert. He is aware of these issues but may not like conflict. He is an older gentleman who has an apartment there at the lodge. Sue is the asst director. She is an older blonde haired woman. She is aware of the issues but has no power.
Please call Angel and let her know what is going on. I told her about the numerous kids and adults who hang out there and the amount of noise etc that they are causing. I also mentioned the one woman who has been there a long time who has basically taken over on whole corner of the kitchen. She said she will address the issues with the staff. I think if you call her as well. I will let her know that this is a serious situation that needs to be addressed immediately.
As far as the nipple. Dr S did it in his office in one of the exam rooms. He cut a t in my breast and pulled it up and pulled the two sides together and then pulled the top part down and sewed it all together. then stitched around the nipple at the breast. It was fascinating.I also learned that a natural nipple is off center of the breast, I kept telling him that where he marked me was not right, but once he showed my what natural breast and nipples look like, I understood why the nipple was off center.
The swelling is going down and I am feeling really tired but am improving every day. The plication has been sore but it is okay as long as I take the pain meds. Dr S lipo'd the back fat around my bra and that area is really sore and itches a lot, it will be worth it though.
Good Luck to all of those having their surgeries !
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Checking in!! Surgery was Tuesday morning and went very well. Of course I experienced the same "run over by a Mac Truck" feeling but all in all the first day went well. During the night I had numerous hallucinations from the pain drip --- keep waking up talking to people who weren't there and at one point I totally freaked out, almost crying, telling my husband I wasn't supposed to eat or drink anything after midnight and now they weren't going to be able to do my surgery" He was sweet enough not to laugh, just calmly told me that I had already had the surgery and it was fine to eat the ice chips. When morning came I asked to change to pill form of pain med. I took Dragonfly's advice to stand up straight as soon as I could -- ewwwweeee, it helped for the nurse to assure me I wasn't going to split anything open.
Last night and today I can't hold my bladder. As soon as I feel the smallest hint I need to go, I get up and even though I concentrate, I pee in my pants. That worries me! I'm now wearing a pad and they have me on a med for spasms but so far it isn't doing anything.
This is the longest message I've written so far -- I haven't been able to respond to many e-mail messages, watch a TV show all the way through or enjoy a Netflix video with my husband. I'm such a light weight with the pain meeds, I fall asleep constantly.
The great news is had FOUR substantial bowel movements this morning!!! Dr. S said I know hold the record!!! Ah, the things you can be proud of. lol
I think I hear a bunch of folks laughing and talking in the hall -- maybe Dragonfly?? Gotta go connect.
Thanks a ton for all your support, guys. NOLA was all you said and more.
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DBDaze - great to hear from you! Congrats on the 4 BM's!!! ha!! That is a significant achievement!!
I hope the bladder thing works out.Sad about Hope Lodge! I hope it can be straightened out...
Melinda, Glad your sonogram came back okay... The skin of my breasts was hypersensitive after stage 1, it did slowly get better.
GOOD LUCK DRAGON!!! Let us know how you are, when you can! I had a recon nipple and all is great! Just sayin!
You Go Trisha! Very Proud of you girl!
You go Nordy! I guess you are in a waiting pattern now.... waiting to hear back about your appeal... How are the kiddos?
Anne, any relief yet from the pain? I know you said it would take a few days... Hope you are starting to feel better....
Hi Deja! How are you feeling?? I am doing pretty well, surgery was 3 weeks ago tomorrow... I am back in the gym and almost back up to my normal weights, and have been doing cardio. Still sore though, Lipo is an ouchie for sure!!!
LIndaG - I will add you to the list above!
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DbDaze - sleeping is a good thing for you right now. Pain meds usually help that along. In no time you won't be needing the extra sleep or the pain meds, so sleep away if you're tired. I hope your bladder issue resolves soon - no fun!
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They decided to put the catheter back in for the night. They did some blood work and the urologist will visit me tomorrow. Supposed to be dismissed tomorrow.
At least having the catheter back in, means I won't be getting up a gazillion times during the night.
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Springtime, Thanks for sharing the Merena bra. What stage II garment did you get? Is it just for the abdomen region. Did you have any lipo on your legs? Thanks for adding me also.
Sandy, I'm one of Anne's cohorts. We (Anne and the rest of us) will try to come to a decision and let you know. I just looked at your web site and will share it on the Charleston thread.
Anne, you are going to be a dual citizen and will need two tees. One for NOLA and one for Charleston when you finally get the "monkey off your back" and can have your surgery.
Dragonfly, I hope your stage II went well and you are feeling good. Let us all kown when you feel up to it.
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Springtime-
My goodness you are on top of things. Thank you for keeping us all updated.
DbDaze-
We are all cheering you on. Just rest and sleep, think healing thoughts. You have it over with, you did it. If you see Dragonfly tell her she picked the perfect time of year to leave the Pacific Northwest. It is just plain yucky here- wet rainy and cold. Tell her I smell snow in the air. Her wish for snow may come sooner than we think.
Take it easy,
Laurie
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Hi Linda, sounds good. We are busy right now making caps and visors for a local cancer center treating breast and ovarian. Some of the women are so excited that we do teal ribbons too, because there's not much out there for ovarian cancer survivors. If you gals decide you want us to make something for you, it would be best within the next four weeks. We signed a new lease tonight and we are moving the business beginning sometime in mid to late December. I am trying to stay calm and not get stressed out over the move, but it's going to be a MAJOR undertaking. We currently have four warehouses and...nevermind....it's too overwhelming to think about how we are going to make it happen before we get slammed with new brides in January.
Dr. D seems to have hit me all over with lipo, including a crease I had in one side of my mid-back from my scoliosis. I now find myself needing to take my own advice to have lots of patience, as it will be a long time before all of the swelling is gone and I see the final outcome. If I start whining, I hope someone here will remind me that "it can take a good 6-9 months for the final result". Amazingly, I have not had any visible bruising beyond the first week, although I can certainly feel where it was done. I think I'm feeling more pain further out than after past hits by the mack truck, or maybe it's that I'm three years older than the first time I went to NOLA. I woke up from surgery feeling like the plication had been done again; everything was so sore and tight. Dr. D had mentioned at my pre-op that he might tighten some fascia, but I didn't get to see him after surgery and am not really sure what he did under the surface. My first surgeon didn't do a nice tight tummy tuck, but Dr. D has fixed that for me now. I'm having my tattoos done in January and then I will be done too. He'll be glad to be done with me, I am sure!
dbdaze, I hope all is well and you do get released tomorrow on schedule.
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