NOLA in September?
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Hi All,
Thanks for the posts and the information on NOLA. I sent my new patient information and photos to Liz today. I know I probably have to wait for awhile to do reconstruction again since my left side implant was just removed on 04/01/10.
I have already used the 12 weeks of FMLA at my employment and the idea of more pain and surgery and possible infection is concerning to me. But I really want to be whole again. So I guess we will see...
I too have many allergies to AB, Tape, Pain killers, Anethesia. etc and my body is very reactive to any stress. So, I need to get back to health and try my best to make sure I don't get an infection again when I have surgery. Does anyone have any ideas????
Sally, I am so sorry you have this set back. I will pray for you.
Take Care All ,
Lynn
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Sheridan, the list of allergies on my allergy bracelet is pretty long - same as yours. No problem. They'll use paper tape and try to find things which will work for you. Your body may need a rest, though, and some good building. You may want to ask those over on the alternative site for some ideas to build your immune system or to detox from your surgeries.
There are many who struggle with these same issues as you. Are you considering doing a deip for both breasts, or just one?
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Sandy!! I SO want to help in whatever way I can. What you are doing has been my dream since my dx. Especially because I was without insurance for so many years.
Did I ever tell you ladies about when my right implant ruptured the summer of 1998? Yep. I was on vacation in Seattle and felt a weird sensation in my right implant and then that cool feeling like when you have saline flush of an IV. Sure enough, my implant had ruptured. It was saline, so I could just watch it deflate. My good guy friends gave me big shirts to wear and kept me drunk so I wouldn't lose it mentally. This was just 5 years after the permanent implants were put in, and you all know how horrible that was.
So, I go home, lopsided, devasted. My reconstruction was a nightmare of horror on my chest to begin with. Now it looked even worse. I had NO health insurance. I was a single mom at the time. I lived in MT. I worked full-time. I earned about $1200 a month. There was no help for me at all unless I wanted to quit my job and go back on welfare.
I researched grant money. I called and called and called. I spent hours trying to find someway to fund my much needed reconstruction. There was nothing unless I wanted to quit or move out of state.
For 6 months, I lived with a sock folded up and pinned in a pull over, cami type bra. I couldn't wear any 'real' bras before my DIEP. My already low self image was CRUSHED. Other than my son's cancer batte, this was my darkest time in my life. I cried every day and every night. I was miserable.
Finally, after nearly having a nervous breakdown, my dad paid for me to have my implants replaced in January of 1999 at the Univeristy of WA. I paid him back slowly when I could. I hardly remember the consult with the PS. Or the drive over. I do remember the pain on the drive back...LOL! And while the 2nd set was an improvement over the 1st, it was still horrible. You guys have seen my before and afters.
So, what you are doing is HUGELY important. And I am truly at your disposal in what you need. I had told my husband that after Tre graduates in June and we get our oldest lined up, that I really wanted to work with cancer patients and survivors again. I did so much more volunteer work in MT than I do here. So, I feel like your post is the Universe giving me my wish.
Thank you for making a difference. It makes me teary with gratitude to know such positive and powerful women.
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Such a fitting name for such an a wonderful foundation! This is a great idea and it just shows how caring and wonderful our NOLA docs are!
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Wow to Sandy and Eve, what a wonderful experience you've had! Ths is such an important organization.
And WOW WOW to Trisha for sharing that story. I cannot even imagine your horror, and no options!! Thank God for Daddy.
I love it when ladies from this list meet up in person!!!
How wonderful for KC and Sally! 0 -
I'm still here. Reaction to AB, then high blood pressure, probably residual to AB reaction. Feeling good. Will go home to Dallas tomorrow. I really loved my nurses, they've each been pretty special women.
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Hi KC, glad to hear you're feeling good. Have a good trip home to Dallas and take care of yourself. I agree with you about the nurses at St. Charles--they are great!
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Hello Ladies!!! It will take me a bit to sort through all the posts - but just wanted to give a quick update!! Had stage II yesterday morning - surgery was a bit less than 2 hours! Dr. Sullivan created nipples, evened out 'the girls (the left side was 15% larger than the right), and was able to get 80 grams of fat off me......I guess that comes out to just shy of 3 lbs! As always, not much sleep last night - just dozed on and off all night and this morning. If anyone is having doubts about stage II feel free to pm me - I am thrilled that I had nipples added, even if it did mean one more sugery!
I had the pleasure of meeting Marcia (soccormom4force) when I arrived Wednesday, and then had dinner with Sandy and Eve - what a fun night!!! Marcia, Sandy, Eve and I were able to pop in and see Christine on Thursday as well!! Thrilled with 'Breastorations' - what an incredible foundation - a huge thank you to everyone involved in making the dream a reality!!!
Just getting ready to leave Fairway, will walk the French Quarter today as long as it doesn't start raining again!! Sally, hope you are doing well - Christine, safe travels back to Dallas!!
xoxo
LouAnn
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Glad to hear from you LouAnn
KC~ Have a safe trip home.
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Lou Ann
I'm so happy for you. I just wish I could have stage 2 next week.
Glad your girls are all even!
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KCShreve: I see you are from Dallas. I don't post often, as Eve just introduced me to the board a couple of weeks prior to my Stage 1 in NOLA. I'm from Dallas, too! I had my Stage 1 on March 30th. I go back for Stage 2 on June 24. How did everything go for you? If you want to email me, I'm at jen at jenboswell dot com.
Fun to see another Dallasite!
Jen
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Well since we already are posted into late July, I'll initiate August surgeries... Springtime, please sign Sarabhealed up for August 19: Stage 2-- Dr. S, St Charles NOLA. (I'm delaying so long in order to enjoy major vacation plans in July). Echoing the kudos and support for "Breastorations"--a wonderful foundation...very impressed!
Good luck to all undergoing surgery and in varying stages of recovery...
Sara
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How wonderful is it that Dr D & Dr S have so graciously donated their time and services so that other women may benefit from the same surgery that we have all been blessed with, Thank you Dr. D , Dr S and all of your staff you truly are angels.
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I agree! Kudos to Dr. D and Dr. S for continuing to find ways to help women heal after breast cancer
Jamie, Brenda.. safe travels next week and good luck!!!
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I am going to NOLA in May for bilateral reconstruction, sgap. Whats it really like afterwards? My nerves are getting to me some days.
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Tweeti, you will be given lots of drugs, both a manual pain pump you can control and anesthesia directly to the incisions across your upper backside. I personally could not tolerate either the pump or OnQ balls as they are called (made me wildly dizzy and nauseous) and still tolerated the pain with anti-inflammatories and vicodin. Tired is the word of the day and I did a lot of sleeping in between my very slow laps up and down the hallway. Make that napping. The dang constant reinflation of the pressure cuffs they had on my lower legs never allowed me to get any real rest. Let's face it. There is no such thing as real rest in a hospital with all the monitoring they do for us, especially the first night when the blood flow to our new breasts is checked hourly. This is a good thing and a wonderfully reassuring sound.
Once out of the hospital, every one has different experiences from steady improvement to open incisions, etc. I have healed quickly and am walking 2 1/2 miles in the morning. The girls still feel really heavy with most of the tenderness along my sternum and along the lower bra line. I have great range of motion in both arms with some tight pain from armpit to elbow in my left that is slowly stretching out. I rarely pay attention to the incisions across my upper hips until I lay down or lean back in a chair. I still have both darn drains, but they are down to 40 and 30cc's so I have hope of getting rid of them in a week. I am four weeks out from surgery.
I would do it all again in a heartbeat and am looking forward to Stage 2 July 30th.
Tweeti, it's surgery; it involves recovery; I wish you never had a reason to go through any of this at all. I can promise you are in some of the best hands at this procedure and you have us to help you through it. I will pm you with my number. There are pictures posted on Timtam's website (I will finally be adding mine next week!) that show you exactly what to expect. My "ewwws" quickly turned to "okay, I can do that."
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Tweeti - I found it all to be in the do-able range - pain, energy levels, self-care. It's a new learning curve for a couple weeks, and then you just do better and better. I felt pretty good in just a few days, and the meds were helpful for pain. I was surprised to say I was feeling good, but I was. I was as slow as a snail in walking hunched over, but with each walk things improved a little more. At home, I needed help, since there is a max weight lifting limit of 5-10 pounds, depending upon your surgeon. At the hospital, their routine is as smooth as it can be, since they do this all the time. It's almost as easy as just showing up and letting them go from there. Of course, there are logistics we have to work out, but they take good care of you and whoever comes to help you.
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Hi you guys!
Yeah! The cat is officially out of the bag! I'm hoping all of us alums can get involved - in whatever ways we can dream up - to help other women who want recon to be able to get it!
Sandy and I were brainstorming at the airport yesterday and were thinking about trying to plan an event - maybe this October, if we can get our act together soon enough - where we could all meet up and do a walk or parade (how about thru the Quarter?!) or something as a first event for Breastoration. How fun would that be?! And then we had all sorts of associated fun and crazy ideas until we had to go to our separate gates or we'd have missed our flights. There are some great times ahead for all of us!
It was wonderful and amazing to meet up with so many more awesome women!
Alaina - so honored to spend more time with this beautiful woman. She absolutely looks like she's in her early thirties, at the most, yet she's almost right up there in age with some of the rest of us! I don't know how she does it. She's been such a support to others who've traveled to New Orleans. But now we need to all get behind her as she has another go-round with his heartless disease. It was a torrential down-pour by the time we left the Magnolia Grill, and Alaina waded barefoot across a flooded street to get her car to pick up Sandy and I waiting under an awning! And this, following her first day back at chemo! These Louisiana girls are tough! And then she was caught in JazzFest traffic for almost 2 hours heading back home after!
I got to meet Marcia, Marcia, Marcia! for the first time! Yes - She is definitely some kind of pin-up girl to aspire to look like in a bikini!
And Swastew (LouAnn) - tall and slim and big gorgeous eyes and OMG! WILD on Bourbon Street!!!!!!! You would not believe it, but we have been sworn not to post any of the pics!!!!!!! And with her friend Shelly, who is an amazing friend! And who is just as hilarious and outrageous and with such a heart of gold as LouAnn.
And then KC - Trying to walk off that allergic reaction to the antibiotics - round and round the halls of St. Charles! But the reaction from the offending meds only made her look that much more glowing. By the time we saw her later, her face had returned to a more normal shade and she was feeling better - so glad!
Sally - She is such a trouper - and with that nasty wound and nasty pain that was finally being calmed with the help of some good anesthetic meds. I'm sure it is all nice and clean and healing well now, as I write. Her aunt was staying with her - in the Murphy bed - such a nice gal from Pennsylvania. Hey, Sally - My son is at Cornell!!!! I was going to ask you at the next visit where in upper NY you were from, but we weren't able to make it back.
I am sooooo exhausted! I always rise to the occasion in NOLA - I think the vampire blood kicked in again while I was there. But now I have crashed! I had terrible acid while I was there - LouAnn thinks it might be the antibiotic finally getting to me - plus, I wasn't as conscientious as i am at home about making sure i take it with food. So i had a couple of miserable nights trying to sleep sitting up and didn't have pepto or anything to sooth it. i stopped taking any unnecessary pills - not knowing what was causing it - including my vitamins and iron (i'm now officially borderline anemic) - so i'm sure that didn't help my fatigue.
so last night, after i got home, i pretty much collapsed physically and emotionally. Just too much, I guess. Plus, you know, we all focus on the positives we can find amid all this bc horror. The launch of the foundation was very positive, obviously, but we know, for all of us, what lies behind the pink roses and champagne and wonderful doctors and even the beads on Bourbon Street - A ghastly enemy that has tortured us all too much, taken its toll on us and so many we love. A couple of times, I just haven't been able to keep that bad covered up by the goodness that fights so hard against it.
The best part of the evening at the Launch was when other former local patients who were there were asked to come up to the front. There were so many. They kept coming and coming. Overwhelming. And still I didn't cry. But then yesterday, when Sandy and I were hanging out with LouAnn and Shelly at the Homewood, LouAnn told us of some comments she had heard from folks as she made her way up to the front - to the effect that "There stand a lot of brave and beautiful women." Tissue please, now! And everyone else is both - tho not me, now, as I'm wading a bit in self-pity and pity for all of us and not feeling too beautiful with my swollen red eyes and one big boob and half a butt! And thank you, Marcia, for your kind words in the parking lot between the Center and the Hospital that night. And thank you, Sandy, for helping me duct tape that drain around my thigh so it wouldn't show under the dress (I had to tell that story just one more time!), and for being such an amazing woman and friend...
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I'll second all of what Eve wrote!
After the Breastoration kickoff Thursday evening, I was sitting with Eve and just wanted to bask in the profoundness of what we will accomplish with this foundation. I met a woman on the Komen board a couple of years ago (after Dr. D began fixing me up) and she'd also had botched DIEP. She's a nurse and a single mom, and money is very tight for her. With HMO insurance, NOLA was not within her means and she has been waiting for years now to be able to have revisions with Dr. D. A few months later, I met another woman with similar circumstances. I have wanted to figure out some way to help these two for so long, and I knew that there are hundreds or thousands like them who also need help, so being a part of Breastoration is a dream come true for me. My mom was a quiet and gentle person, but she knew how to ask for help to change things for the better, and I desire to give of myself as much as possible to honor her memory. Breastoration is going to dramatically change peoples' lives and it is such a huge honor to be a part of it. I knew that Dr. D and Dr. S were going to donate surgeries and hospital stays, but I had no idea that they were also going to commit to giving a million dollars to this effort. They are such amazing people, and we are so very blessed to have been able to have our surgeries with them. The privilege of being able to meet so many of you in NOLA is so appreciated. I've made friendships that will last a lifetime and I can honestly say that my life has been enriched so much due to my own journey with breast cancer that I don't regret my diagnosis or my complications, because of where they led me.
Please, sisters, let's pray for Alaina. As she puts it, "the more prayers, the better". She will have three rounds of chemo, then more tests nine weeks into this, to make sure that these new drugs are killing the cancer. Alaina reached out to me through these forums when she saw that I was going to be traveling to NOLA alone for one of my surgeries, and she picked me up at the airport. Since that trip a couple of years ago, she has come to spend at least an entire day with me every time I've been there, and has driven me all over southern Louisiana as my tour guide extraordinaire. She is a beautiful woman with a gentle spirit, and deep-rooted faith in God. She has resolved to fight the cancer with all of her might, and greatly appreciates our thoughts and prayers.
The days we were in NOLA were very emotional times for both me and Eve, and we marveled at the experience again yesterday, as we spent the last bit of time sitting at the airport together. Thank you to all of you who have offered to help with the new foundation. Of course, funding is of utmost importance as we decide just how to get critical information about available reconstructive options into the hands of all women and start sending women to NOLA for their surgeries. I'm going to ask the web master who is running the Breastoration site about putting up a Paypal button or other means to accept donations because so many of you have expressed a desire to give now. Thank you all so much--we are all in this fight together! We will work on setting up a combination reunion and fundraiser in NOLA so we can all be there at the same time, and do something really meaningful for Breastoration as a group effort. October seems to be a good time for all of those we've talked to.
I also want to mention that LouAnn very generously donated airline buddy passes so that I could take Julie to NOLA three weeks ago, and is working toward securing airline tickets for Breastoration patients whenever possible. LouAnn, thank you so very much for your kindnesses!!!!
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Okay I read this on another board and was very ??? about it.
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Jaimie, I just read it. Are you referring to the part where they say they are one of only two places that perform the surgery? Also, I noticed their photos looked more like HIP gap only the scars were on an angle instead of straight.
By the way, good luck this week with your stage 2 surgery coming up! I'll be a few weeks after you and I am looking forward to it!
Suzanne
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Suzanne~ That and the fact that they "pioneered" it. I was just shocked at the article just coming out and it is a procedure that has been "around" for a while but they are pioneering it.
Thanks for the well wishes...I am not so sure that I am ready but I am looking forward to hearing Dr. S's ideas of what he can do. He has already proven to be a great artist so I am looking forward to hearing what he would like to do this time.
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Wow Sandy and Eve - I am so glad you've helped get the foundation going to help more women get good recon. It sounds like the kick-off was an amazing success.
By the way - has anyone found a good place to donate their prostheses?
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Jaimie - I wish there were photos of the "LSGAP". I'd like to see how it's different from the SGAP - that scar looks just like mine. This whole "pioneer" business seems to be used a lot. I'm thinking that maybe early practitioners all refer to themselves as pioneers - which might be different from the people who invented it? Like the first people who went west were pioneers, but there were lots of them?
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Black Dominatrix girdle question - when you wore this, how did you manage the swelling? It is squeezing my body tightly, which makes swelling go to my legs. So I put up my puffy legs, and then I end up with puffy face,neck, and arms. There's no winning. It's wearing me out. I want this swelling from Stage 2 to go away immediately. I'm not being patient at all. I'm feeling very uncomfortable.
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I figured that I just have a pet peeve with hopkins in general. I worked for them and I just got to see a lot of shocking things. I know they have some great surgeons I just wished they always told the truth about things.
Okay so how bad is it that I am not packed and I am not stressed about packing..lol...I figured I would get some things in the bag and it will all work out. I guess I am being lazy about it.0 -
Got a PM from Sandy2009 and adding her Stage 2 to the list above in May.
Tweeti, if you want to be added, send me your specs, as you see above. Thx!
Spring.
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Feeling much better today. I had a really horrible day on Saturday so they did not let me fly home on Sunday I am thinking they will discharge me today and fly out tomm as it is after noon already and I am still in PJ's My BP is very low 89/52 Has anyone else had that problem. Incision looks wonderful. I am so happy that the girls from the site came and visited me on Friday It truely lifted my spirits.You guys are so thoughtful
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kc - i didn't have that problem. i think you should call the Center. it's not good for you to be so uncomfortable! Maybe they could get you a bigger size so it could be a bit looser? Or maybe you could cut a slit in the lower legs, since I don't think they really need to be compressed - it's just to hold the whole thing in place, really, right? I am still having swelling 4 weeks out, now, from stage 1. i didn't really realize it until looking at pictures of my face - ewww! And then I couldn't even get into my shoes last night, after not having had any on all day!
sally - i'm glad your spirits were lifted and i'm so glad your incision looks good now! my bp was pretty low, I think, but because my blood volume was low - i had 2 surgeries in one day, including the stage 1, which is pretty long. i doubt that is your problem. i'd say, just try to relax and let them take care of you. u don't want to be rushing it and then fainting and bumping your head or something!
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Jamie...Good luck with your surgery this week. I remember that I was very excited and looking forward to getting stage 2 done. Did you get your packing done yet?0
