NOLA in September?
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Nordy, I will get that for you and PM you. I am trying to catch up on over 1,000 emails...most of which I don't need to read/respond to, but I am weeding through.
I can tell you that she was on desk duty due to her LE, not able to shoot a gun! Now she is back to full duty. It's amazing. However, I think she may have had the surgery that you don't want...the other procedure. We'll find out! Maybe your therapists think you are bonkers because they have never seen anyone benefitting from this surgery before...afterall, it's new and rare! I do not think you are bonkers. You are young and beautiful and suffering....and I for one would like to see your lymphedema go away!
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Nordy and Sandy -- Around where I live, the idea that my butt could make me a new breast was not only poo-pooed, but actively discouraged! You can't believe the pressure for an implant, regardless of how articulate I was on why not! So, let'em think you are bonkers ... they will learn ... :-)
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Nordy and Sandy -- Around where I live, the idea that my butt could make me a new breast was not only poo-pooed, but actively discouraged! You can't believe the pressure for an implant, regardless of how articulate I was on why not! So, let'em think you are bonkers ... they will learn ... :-)
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Ladies, I am in London staying with a friend as I am here to see my daughter be awarded her Masters degree. My friend has hired a new nanny, she arrived the same day as I did. We got chatting this morning . . . I had an absolute shock. Not just that she was a breast cancer survivor, but as she was referring to her surgery, she ran her hand across her belly and my jaw dropped. I said, do you mean you had your breasts reconstructed using you tummy tissue. She said she had, and I burst into tears! I couldn't believe it! I told her that I had surgery also, and she nearly fell over. She actually had a tram, which led to more discussion as she had never heard of DIEP when she had hers done 4 years ago. Then when my girlfriend came in, we told her and for the first time in the three years I have known her, she was speechless. I don't know - it just seemed such a really amazing/odd coincidence to have two of us in the same house just by random happenstance, that I had to mention it here. . . . Guess I am finding myself with some strange thoughts tonight . . .
Anyway, prayers for surgeries tomorrow, prayers for our sisters Penny and Alaina . . . and for all of you as well . . .
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Everywhere I go, everyone I talk to has a sister, a friend, a mom or an aunt.....it's just overwhelming how many of us are being diagnosed. There are bc sisters everywhere, and so many want to help do something. I'm just amazed every time I open my mouth about it. OH!!! and speaking of opening my mouth, I had dinner in Atlanta with the founder of a HUGE giftware company. She was run over by a dump truck in Atlanta during market a few years ago and miraculously survived. Her best friend is battling bc, and she wants to help Breastoration....!!!!!!!! Could be huge for us!!!
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Omg Amy! I would have had the same reaction. Glad your are there to see your daughters masters. How wonderful. I meant to send you an email today and for some reason it has been misplaced. I will instead send you a note on FB to catch up.
Ok Girls, I need help. I am trying to book hotels for after my surgery in March. First let me say, March is the best time to go to Nola for a cheap stay:(. Anyhow, I am going to use the centers discount. I am looking at the Hotel Monteleone, Saint Marie Hotel and Place D'Armes. Any of you stay at these? I am hoping for a larger room but don't really need a suite. I know I could go to Homewood, which I may end up doing but I kind of wanted to experience all little French Quarter character. Or maybe that wouldn't be wise after surgery.0 -
I have always stayed at Homewood but I have heard good things about the Monteleone.
Has anyone heard how Need2New and VictoriaB are doing?
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Just checked Homewood, no rooms available. Slim pickings.
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Michelle - I stayed in Hotel Monteleone prior to my Stage 2. The rooms were quite small. We just had a basic room though - they may have larger premium rooms. We also had zero view (it was a wall or something). The Carosel Bar in the lobby is fun too but make sure it is open. They were closing soon for a huge remodel and I don't know when that is.
I would highly recommend recuperating in the Homewood Suites. Even though you called to check you may want to have Katie check for you. It can't hurt and she may be able to get you something that you can't get. The rooms are huge there and having a suite is a definite advantage post-surgery.
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Michelle.. I agree with Laura... I had looked once at HS and it was booked and then I asked Katie to look into it, and voila, got a room...they must hold some for the Center.
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Nordy, I agree with Celtic, ppl here though I was bonkers to go to New Orleans after Katrina to get breast reconstruction. They said, everybody is trying to get out of there and you're going in? ha ha. YES I WENT IN. Nordy, your LE therapists are living with it like you are, and likely they've never seen anybody "healed" of LE. You're told it is premanent and unfixable. So the LE therapists teach you how to deal with it so you're not driven mad, which you almost are anyway. You will do the right thing for you! Share what you learn with us!
Moneleone is in a nice location but compred to Homewood, the space is small, standard hotel room size. No food. Great rooftop pool though. I did like that pool.
Amy, congrats on your daughter's masters degree!!
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Nordy, have you considered asking Marga to have some of her patients contact you? She has a lot of success stories. Part of the group she's reaching out to at her seminars is the PT/LE therapist community. It's hard for therapists to do a 180 around what they've been taught. You know. You've worked it. There will be a lot of educating going on in the coming years...
You're one tough fighter, Nordy. I admire your attitude.
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Nordy - I have talked with my LE therapist repeatedly. I'm sure that you have tons of info on the surgery but wanted to let you know that my LE therapist says that she hopes that the inguinal nodes are taken from the contralateral side to the LE. I think that youu are incredibly brave to be pushing forward with insurance and pursuing this. You are a trailblazer!!!
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Hey Yall, I'm new here to the blog tonight! In 4 days I'll be in NOLA for DIEP recon. Left is delayed from mastectomy in July 2011 and having prophlatic skin/nipple sparing mast. on the right w/ immediate recon. I've been so down waiting these 6 months to get to this point, now reality is so close I'm a bit nervous about my decisions. But I've made them and I know I don't ever want chemo or go thru any of this again. I hope I made the right decision to have skin sparing on the right. Dr. S told me about the natural 'cone' shape pocket with that and how the tummy skin flap won't have that natural conture. I have complete faith that he'll do the best job that can be done to achieve as close a match as possible with 2 different procedures on each breast. I simply want to keep as much of what I had to begin with including my 1 real nipple even though it won't react like it's old self! LoL! I'm told they can match it pretty close with the delayed recon tatoo. Not expecting perfection, just want to feel whole again and look normal in my clothes without worrying about scoop necklines revealing a prosthesis! Is anyone going to be in NOLA on Jan. 24th - 27th? That's when I'll be there for stage 1. I love New Orleans. It's in my back yard from where I live in Gulfport, Ms. We go over there alot just to eat at our fav places on St. Charles Ave. And I'd never heard of CRBS right there on the same street until this BC happened to me! We love Zea's and Houston's, one on either side of CRBS. Then for mexican it's the Superior Grill all nearby!
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Hipsters--do any of you have pain regularly at the hip drain site? Almost every day one or the other (or both!) hurts where the sutures are in the skin. Neither looks infected, though they are a little red. I use the betadyne and neosprorine 2-3 times a day. Thanks
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Nordy girl..
Many many millenniums ago the belief was that the earth was flat! We've come a long way and VLNT may be the result of intrepid Surgeons like dr Massey and others who believe that the "status quo" of telling patients to, "live with it", just isn't right! I believe in you and if your research and gut tell you "VLNT is for ME and I will be another success story", then keeping gathering your data and fight like heck to get what you need and deserve. We are all behind you and if you need my help with pulling up research data, I'd be happy to!
I know you can do/have/achieve ANYTHING 'cause I believe in YOU!
Much love XOXO
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Welcome Nannykat! Dr S is my surgeon and I think he is great! I also think you are making the right decision to do skin sparing on the right, knowing that not only will there be less scarring but it will have as close to natural shape as possible. I've always love NOLA and now I love it even more.
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Thanks cider8!
4 days til DIEP and I whenever I think how close the reality is, I get that feeling of losing your tummy! (no pun intended) You know when something so cool is about to happen and it's just too good to be true! There it goes again...
I see you had 21 nodes removed w/ 1 invasive. Why so many removed? Did they not do Sentinal nodes 1st? I'd had a Pet scan that showed no node involvement, 2 rounds of chemo, had 3 sentinal nodes removed all clear, so I was upset the surgeon took 2 more out making 5. All were clear! My intercostal brachail nerve was damaged, so now I have that post mastectomy pain alot. Just curious about yours.
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Has anyone stayed at the Hope Lodge in NOLA? I'm staying there the night before my pre-op tests and appts. on the 22nd and on the 23rd night before my surgery.
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It was my sentinal node that was positive. So the protocol is to do the axillary node dissection. It was also a surprise that I had a positive node, which led them to a surprise second tumor that was invasive. The first tumor, that I found, was mucinous and almost always non-invasive and a bunch of DCIS. Dense breasts buried the detection of my IDC; I had ultra sound, MRI, MRI guided biopsies. I'm still having a hard time accepting the AND with so many nodes taken; I'm more upset about it than the BMX. Sometimes I want to think about what if scenarios (what if they scanned my axillary and found the positive node first!) and grilling my doc about WHY so many. It is done. So from here on out I am very cautious about LE and do what I can to prevent it. I guess technically I have stage 0 LE, as I feel the heaviness and tingling, but no swelling. I have a lot of numbness that I thought I couldn't deal with (freak me out too much) but I have gotten used to it. Dr S may be able to help you with that nerve damage. I remember someone else on this thread had their post mastectomy pain relieved after flap surgery.
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I stayed at Hope Lodge the 2 nights before my Stage 2 surgery. It was quiet and clean and the bed was very comfortable. The only time I spent there was to sleep! Otherwise we were running around enjoying ourselves. I would not want to stay there post op unless I really couldn't spend the money.
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cider8,
I have dense tissue also. My tumor was 4cm in the left breast when I found it and looked no dif. from the healthy right breast on a mamo. That's one reason I'm going for the prophlatic. I might not be so lucky next time if I have to wait til I can feel it again! Wow girl! So many nodes... I know you are concerned about LE. Yea I've done the 'being upset with the surgeon' process over and over too much too. It is what it is and I really do like the surgeon and know he did his best and even told me he thought he'd kept that nerve clear. So I've clung to those words in hopes the nerve is just disturbed and will heal. And he's the one who told me about the NOLA DOCS! Did you have that awful 'cording' from the node disection? I had that, but thank God it didn't last too long because I did the exercises to stretch it. However I do still feel a pulling all the way to my wrist sometimes if I don't exercise that arm. My problem is stress! It's as if irritation or stress of any amount turns on a fire across top of my chest above the mx scar. I have a desk job and when numbers don't jive or I have a problem to solve it flames up on me I just can't work! So there is some connection with nervous stress to the real nerves in the mx area! There may be like a trapped nerve in the scar that the recon will relieve... I sure hope so. My onc who treats with immunotherapy gave me some 7 Keto DHEA he said could help with nerve regeneration and I would tell in a couple weeks. It's been 3 weeks now and I'm thinking that 'maybe' it might be helping. But I'm not convinced yet. That may be a mute issue after the recon? I will be praying for your arm.
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cider8,
I will be going HOME when I'm released. I'm only an hour drive. I just happen to have a large enough BR with a sitting area and my comfy lazy boy recliner in front of the TV and my netbook! I'll have to go back 3 days later for my post-op visit, eat lunch at Zea's (maybe if I can) and back home same day! Ewwwww I'm so excited!
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Celtic - funny that you mention that about people not being supportive about your butt being made into breasts! My friend and I were just having that same conversation today regarding how newer surgeries are sometimes looked at! If my local PS had not had another patient prior to me go to Nola for sgap, she might not have been so supportive. But now she refers patients there that want flap reconstruction. So, I think sometimes seeing is believing.
Sandy, Anne, Marcia, Spring & everyone else - thank you for your support! I knew looking into this was not going to get me a ton of support from the therapists... my colleagues, no less! I am not stupid (this thought geared toward them, not all of you, who I know "get it"). I have researched. I have gone the standard treatment route, not once, not twice, not three, but four times with the therapy and the wrapping. I wear a sleeve every single day of my life because if I don't my arm is painful & rapidly gets bigger than its normal big self. I wrap every single night before bed. I do self mld, exercise, maintain a healthy weight, try to eat right ( except for beIgnets!), am meticulous about my skin care.... And STILL I wound up with a horrible case of cellulitis last April requiring IV antibiotics to treat. I have tried unconventional therapies such as cold laser and acupuncture. Still... nothing. One of the therapists that I trained in lymphedema therapy with actually got angry with me for even considering surgery. Yet she has never treated a patient that has had the procedure. She can only look at what little is out there that has been written on it. Know it is unconventional. I know that it is not without risk - no surgery is. And I also know that with all this, it is still NOT a cure. I will always have lymphedema. I will always be at risk & will always have to follow precautions. But to be able to go even a day or two a week without a sleeve and the pain that accompanies that would be worth it to me. I know that Dr. Sullivan won't do surgery on just anyone with lymphedema, the potential benefit has to outweigh the risk - and in my case it does. So.... And that is my unloading for the day - sorry!
Toomuch - yes the nodes are taken from the contralateral side.
Nannycat- welcome to the boards. I am jealous that you only have to drive an hour to get Zeas.... And Cafe Du Monde. PS - Dr. Sullivan is awesome!
Momtofour- i agree with everyone else- call Katie. She can make it happen when it seems impossible. I usually book my rooms myself, but she did it for me this last time because I was coming up empty. She will help you out!0 -
I will try to call them direct. My doctor is Dr. M so can I use Katie to find me a room? I have never been offered her services before.
What about Iberville Suites? Anyone. I wonder if they would be a good size room. Ugh.
Thanks Girls and welcome Nannycat!!!
Michelle
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Michelle - I stayed in Iberville Suites prior to my Stage 1. It is a nice hotel in a great location. Light breakfast offered in the morning. Beautiful courtyard with pool. Our room here was larger than our room at Monteleone - but was older. But older is fine that is not necessarily bad. We had a terrace off our room that was nice too - we shared it with the room next door.0
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Michelle- Ashley told me to call Katie to arrange a hotel, and when I did Katie told me Ashley should do it. So, I had to arrange it myself. Couldn't hurt to ask though, maybe she's more amenable to helping Dr. M's patients now.
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You go, Nordy! Thank you for sharing your experience thus far. I watched Dr Becker's presentation from the Encourage meeting. Stunning! Amazing! It can work. Someone has to be the trailblazer.
Nannykat, you have a great set up at home. I stayed in a house post op both times and I loved it there. I had some slight cording after my BMX that resolved with PT. I had a much harder time with range of motion issues that I went to the PT for. I did have some of that nerve pain that I felt all the way to my thumb. It went away after about 4-5 months.
I started high blood pressure med yesterday. My blood pressure started elevating about 6 months before my cancer diagnosis. No one seemed particularly concerned about it throughout treatment (except for my sister!). The docs would just ask if it was usually that high and not say anything else. When I got my first aspiration a couple weeks ago the nurse navigator gave me the what for! She just said get in to my PCP about it. So. Here I am with another med. Ugh.
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Paula, I've been dealing with HBP since after my stage I DIEP in 2007. It jumped up 10 points per month and finally got to 150/100. After some detective work, we figured out that because I'd been sleeping on my back for four months, I'd begun having mild sleep apnea episodes. I did a sleep study, but they wouldn't diagnose me (not stopping breathing enough to qualify for treatment). I saw a cardiologist and he told me to find a way to stay on my side at night, such as by sewing tennis balls into the back of a t-shirt. I really didn't want to start on medication so I started sleeping with a pillow behind me, but never could get my blood pressure back down. Finally had another sleep study last month, and needed to have five episodes of apnea per hour for a real diagnosis. None until I rolled onto my back, and then I did 5.1 and qualified! Got my CPAP and started on it about 3 weeks ago. I'd been waking up with frontal headaches that meds wouldn't help with and those are gone. I cannot say that sleeping better has changed my life yet, but I'm hoping that my BP is lower when I see my PCP next week because I really don't want to have to take the medication forever. Right now, I'm only on a diuretic. I was taking Benazapril last year, but then read a study on this site that showed something like an 82% increase in breast cancer recurrences, so make sure you are on a beta blocker type med and not the other type! The study was new at the time and my oncologist was not yet aware of it, so I am very thankful that this site provides us with the latest research!
Nannycat, welcome! You have found the best breast recon docs in the world right in your own backyard and you are so lucky to be within driving distance! It always amazes me that women in NOLA don't even know the Center exists.
Michelle, if you are on your own with Homewood, just call every day. If you are persistent, you'll probably get to stay there, but if not, there are plenty of really nice hotels in NOLA. If you are traveling with someone other than a husband, it is very nice to have two bedrooms, but we've all stayed in many places in NOLA and recuperated just fine. The one drawback I found is that it's a few blocks to the French Quarter, and I didn't feel comfortable walking in that area when the streets were empty at night. I stayed at Hope Lodge once and it was nice, but it is far from all of the action. I did have a bad experience at Place d'Armes. A rodent in my room, and after heavy afternoon rain, we were trapped in a tiny area of the hotel because of flooding too deep to walk through. Because we could not get out, the night before surgery I dined on crackers from their vending machine. They moved me to another room for my post-op days, but we found a cockroach in the bathroom in the morning. I asked for a partial refund and they wouldn't allow it, instead offering me a discount for a future stay. I would never stay there again. Other people love the place, but that is not the environment I wanted to be in, before or after surgery.
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Sandy, thank you for all the tattoo detail on the last page. I was very happy to hear that you liked Vinnie and his work. Please let us know how it turns out after all the healing!
Nanny, welcome! I added your info to the listing above. Let me know if anything there needs to change. I too had dense tissue, are you aware of areyoudense.org? You should get hooked up! There are so so so many of us out there, it is immoral! Dense tissue is the biggest predictor of mammogram failure, and 40% of women have dense tissue.
Also, I see you had 0 nodes involved, yet you are categorizing at 3c, I think you are 2b!! If that matters at this point, ha ha ha. I also had a very large tumor and no nodes involved, 2b.In any case, it is normal to be nervous about the upcoming surgery we all were. but you are going to the BEST PLACE in the WORLD for breast reconstruction and you will be cared for, and you are in the best of hands. THE BEST!
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