NOLA in September?
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hey all - had chemo today, white count is passable, but still very anemic Onc said. He ran extra blood tests to check iron, b12, and some other stuff I cant remember, lol, so we can find out what is causing the anemia and what we need to do to fix it. At least I got my treatment, and should know more next week. Prayers and good wishes to those going to NOLA next week. You'll be in the hands of the best of the best there, and the hearts of the strongest and most determined - Us!!
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Hello old and new friends! Gosh....I am SOooooo behind! but I DID chat w/ Nordy last week on the phone. SOoooo today is my 6 mos anniversary from stage 2.....AND I was able to have stage 2 only 10 wks after my stage 1 which ended up being a PBM via DIEP after a history of R breast ADH(2006) and IDC L breast which was treated w/ lumpect and rads.....in 2008.
So.......Life 6 mos later.................I am SOOOO happy to be rid of ducts and lobules. No regrets whatsoever about that, or the being choosey/pickey about experience level of surgeons. It was a big surgery...actually 2 big surgeries for me....and honestly the second was a bit tougher than the first -for me.......BUT......I said YES please! to all the bonuses.
It took a while to get back to work at full kilt(4 weeks post deluxe stage 2)...AND have everyone accept me (back at full kilt). But I'm there......Anyhoo, am just getting back to previous level of workouts/fitness....(A HUGE reason I did this to start w/!).......... I DO feel exactly where the plication happened w/ ab wkouts....Oh my! and YES, I still have some lower abd swelling after long days on my feet. Compression is STILL my friend. As for body changes...Oh yes! My bum/hips/thighs are smaller.....Thank you Dr D.
Anyways....just wanted to say hello.....Spring.....a year ago seems SO long ago! But having this forum was /is so helpful! THANKS!
I have approved time off end of oct and very much hope to make the party in NOLA...we'll see!
Thanks ladies and best wishes to all!
jjd
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Shay, The nurses will give you Colace while you are there, which works well. I brought along concentrated Milk of Magnesia for after the hospital. Everyone is different, and I do better on this product. Whatever works for you, do it at least once per day until you are past your pain meds. It's the pain meds which are constipating. If you keep up with it, you'll do just fine. If you're still on pain meds and you skip a day or two, it can be very difficult to deal with. Also, drink tons of water. Aside from that, relax. You are in good hands.
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ShayT, a bit of advice one nurse gave me was to drink a full glass of water with each pain pill, because they are the main culprit in constipation woes. Smooth Moves tea has been recommended by many ladies here, although I've never tried it. I started on Colace two days prior to each of my surgeries and that seemed to help me a lot, along with the water. You really don't need much in the hospital, as so much is provided for your comfort---they have lip balm, shampoo/conditioner, toothbrushes, robes, the comfy slipper socks the Center gives you at your pre-op....a couple of times I recall going into the hospital with only my iPhone, contact lens stuff and the clothing I was wearing. Before you leave home, you may want to print out discount coupons for restaurants and any tourist attractions you think you'll want to see, since you may not have access to a printer there. You and Laughlines are going to do just great--you're in the best hands in the world in NOLA. All of us will be anxious to hear from you after surgery!
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Shay ... Laughlines.... rooting for you next week! ... both of you are delayed bilateral GAP/Hip girls like me... I hope everything goes smoothly and you're up walking the halls together and getting your Icees real soon...
I have to say I was shocked at the sheer quantity and variety of meds I had to take for constipation after both Stage 1 and Stage 2.... so... take everything you can find and whatever might have worked for you in the past.
TrainerTam .... I was told to wear the Dom 1 week after the last drain is pulled ... then I switched to a smaller compression boyshort-type garment just because it felt better still being compressed for a while...
Welcome Kristy!
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Shay and Laughlines--you'll do great! We are all rooting for you!
Gin--God bless you--hope your counts go up--you are an inspiration
TrainerTam and all the Scrapbookers--FABULOUS! I'll be taking mine down in August.
Sally and Amy--10 week countdown...I know it will go fast...and slow!
How are you Pam--on vacation yet??? Have fun--you and dh deserve it!
I had some more myofascial tissue work done on my scar area that goes all the way around my middle (cut in half). Brutal, but amazing! I am 14 weeks out of my surgery, and I really didn't think my backside would ever be anything but tight, tight, tight. I feel like a new person. I really recommend a comptetent Physical Therapist with some sadistic tendencies! Yoga is also helping alot too. Happy healing to all!
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Thanks everyone for your feedback. -- All who responded to me it is so very appreciated!!!
I am a BRCA1+ previvor who lost mom and grandma to breast cancer many years ago. Very aggressive types and trying to avoid this happening to me!!! I was screened for ovarian cancer today and had a GREAT report. Thank goodness!! So happy.
Ready to move forward and put this worry since I was 13 years old behind me. That is the age my mom passed and I miss her every day.
Just found out my step-dad is passing from Leukemia. Don't talk to him anymore, but my brother informed me of this and it really hit home and brought up memories of mom and her battle.
Has anyone had a double mastectomy AT NOLA with current BS prior to their reconstruction?? I would love to chat you with. I would like to know about the mastectomy piece and what to expect? I realize they do a ton of recons, but what about bi-lateral mastectomy? How much total time will be added to the surgery??
How satisfied were you with mastectomy and with the pathology group that reviewed your tissue? Does anyone have any knowledge on this most important matter?? information on the current group's pathology experience??
Do they test tissue while you are under for those who chose NSM???
Has anyone done ASM?
ShayT- I will be praying for you and looking for you on June 14th.
Please anyone who would like to PM to share your experience...please do so. Would love to see some of Dr. D's results if anyone would be willing to share with me, please PM me. It would be most helpful since I am meeting with him. (I saw a patient of Dr. S's and WOW....the nipples looked soooo real!)
Can Dr. D make big nipples also if you want him too? How do they look?? Anyone?? How does he do it?? I always here most other surgeons shrink.
I had contemplated going to NOLA for almost a year, and then just decided to go for it. And, I am moving quickly here with strength from all of those who went before me. This was my biggest deciding factor....reputation and results!!!
Thanks ladies for your support and glad I found all of you!!!
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Shay and Laughlines..all the best to you. Soon you will be able to post from the "other side" and brag on your new girls...woohoooo! Cant wait to hear from you during your recoverys~ happy healthy new hooters to you both!
Oddball,I am Soccermom from the FORCE website and just wanted to chime in and wish you well on your journey.I know ts scary contemplating surgery but you are taking the bull by the horns and will emerge on the other side with reduced risk and a sense of peace,Ijust know it!
I dont know how many on this thread have had prophylactic surgery so i cant answer to that but I know there many of the FORCE site that have had surgery at the Center and they generally are happy to respond to any questions (www.facingourrisk.org)
Hugs,Marcia ::)
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Sally, I will pray for your sister...
Gin, Glad to hear your Chemo is going along as planned.
Laughlines and ShayT, Good luck next week....I will keep close watch on your recoveries. I am scheduled for the same procedure at the end of July and I am nervous....I take Miralax (laxative) every day in a little bit of juice. It is the best laxative I have found. I also drink a lot of warm water and green tea after I have surgery and that helps as well.
I have a couple general question to all of you who have had surgery.
Since stage 1 surgery lasts so long, does your throat hurt from the breathing tube?
Did you all take a lap top computer with you? Did you use it?
Regarding returning to work. I plan to work from home and do desk work after about 3 weeks. Is that unrealistic????
Any feedback you all can provide would be much appreciated.
Hugs to all,
Lynn
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I just had a look at the album and it is AWESOME!!! Thank you for posting the link Tammy...I did shed a tear or two..sniff
Beautifully done ladies!
Marcia
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Oddball, I had PBNSM at NOLA. Everything was done at the same time. I believe the mastectomy adds about 2 hours to the total surgery. I more or less trusted the BS who did the mastectomy because the NOLA docs work with her all the time and since I trust them I assume they wouldn't be working with someone unless they are very competent. Same goes with the pathology group. My stage 1 was around 7 hours. I just had stage 2 on May 20 so still have glue, etc. As far as testing while you're under for NSM, they do but I know I was told that if any suspicious cells turned up they would remove the nipple at stage 2, so I think they check at the time and also later when all of the breast tissue is analyzed.
Lynn, at stage 2 my voice was gravelly for a few days from the tube. Didn't have that after stage 1 so maybe it's how they place it. Not sure. I did bring a laptop and yes, I used it. I think most of us here have done that. You'll feel fine to go online, surf the net, give us updates!
Best wishes to Shay and Laughlines!!!
Tammy thanks for posting the scrapbook pics--they look fantastic!
Suzanne
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For those having stage 2 I highly recomend the Bromolain capsules. They help shed fluid AND they really loosen things up too! This may even be helpful for stage 1 gals too. I also used the Smooth Move Tea (chocolate flavor) and it really helped.
I'm so glad you are all enjoying the pages from our thank you Scrapbook. Can you imagine how much THEY loved it? When you go back make sure you read what everyone wrote, it's so heart warming!
For those going to NOLA soon, light weight sun dresses! it's hot and humid and also it's hard to step into pants so the dress is easy to lift (if you know what I mean!!!) AND, they hide the drains well. You'll be wearing a little black stretchy bra so perhaps a dress that "goes" with that would be good. Big hugs, enjoy the comfort and pampering you will receive from the Center, I love those people!
I have a question about October....what's the plan? if I have to ask for a day off I need to know now (and I may just have to call in sick!) but I'd like to know the best day. Living in So Cal means i need a whole day for travel,
are there any plans other than the race that Nordy is in? How many of you will be there?0 -
Thank you Hello from CT....appreciate the feedback.
Trainertam....thanks for the suggestions. I too looked at the scrapbook and it looks like you all put in a ton of work. Can't wait to ask to see it in person. I shed a tear too!! Especially the one of the mommy holding the baby and then getting to have another baby! God is good!!!
Off to get my mammograms and US reports.....to take with me!
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Sally - I am so sorry to hear about your sister. Please let us know what happens next. This is so upsetting. Breast cancer is a BEAST! I hate it !!
Tammy, I had my knees done, but that was not bad at all, I had a ton removed from my "saddle bags" (upper outer hip area) and needed the Dom for that. The Dom never reached my knees (I am tall) anyway - they were bruised and swollen, but my backside of legs is what was really really sore for 3-5 days after the lipo. No knee issues!
Shay, I took Myrilax powder and Fleet suppositories. TELL THEM in the hospital, and they can get you set up. HOWEVER, I always took my own, and I ALWAYS NEEDED THEM!! I am like a constipation queen or something. Milk Of Magnesia MOM - I never took for surgery, but had to take once during chemo, and it worked like a charm! That is also a really good suggestion.
Ginnie! Hang in there! My blood counts are still low, and my ONC said at this point it will take likely a full 2 years to recover. But mostly I am okay, I notice I need a lot more sleep. I tried taking IRON to build up the reds, but (guess what) CONSTIPATION!! I take one iron pill every third day - I seem to be able to handle that! I guess it will take longer to build up at this rate!
PJ!!!! our PJ!!! So nice to hear from you!!!
June 14 - ShayT is having her Stage 1 bilateral SGAP in NOLA with Dr. D!!
June 15 - Laughlines is having her Stage 1 bilateral Hip Flap at St. Charles in NOLA.
I hope you two can hook up! It makes it so much nicer.
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Tammy, I can't get to snapfish!!! I am so sad, I tried three different browsers, and even rebooted! I will keep trying. I really want to see the Album!!!
"The server at www1.snapfish.com is taking too long to respond"
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Laughlines and Shay T-my thoughts, prayers, positive energy are with you as well as you both take this huge step. Sara--10 weeks feels very soon to me!
TrainerTam-loved the scrapbook. What a beautiful thing to do. Nordy, I agree with Oddball1-your pages especially got me.
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Hi Everyone,
Thanks for the warm welcome- I am overwhelmed by the response by the staff at NOLA- I have already received a call, detailed explanation, lots of details, they are reviewing my insurance info etc.
This weekend I have to take pictures (UGH)- I told Liz that after 5 pregnancies and a mastectomy, it was going to take a margarita to get me through that photo session. Hopefully hubby or daughter will help me get those done this weekend so I can start really looking at my options!
Kristy
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lol Kristy . . . it seems like only yesterday I was setting up the tripod in my bathroom..... lol. Wait until you email them off.... that's when you freak out and worry about your naked pictures ending up in a viral email. Ok, that was me.... but make sure to cut your head off just in case.. LOL Yum... a margeurita sounds great right about now...
I just got back from shopping to find a shirt that disguises these larger than life nipples ..... lol.... We are going to a comedy club tonight and I certainly don't want to be singled out in the audience... I'm sure there are a lot of good jokes about ginormous nipples.. and I don't want to be the butt of them...
Have a great weekend everyone!!
P.S. Sally... I'm sorry about your sister...
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Tammy I am planning on going down in October. I have the week after Halloween off. Right now they are working us 6 days a week. I sure hope that slows down ( I should not complain I have a job) but If things slow down I am planning on Flying in Thrusday and out Tuesday. If things down slow down it will be in Friday out Wednesday. Let me know what your plans are.
I never had to send pictures even though they said I would before the surgery. But I sure have sent enough since the surgery.
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Hi again ladies......Can't remember who asked -but I too had a PBM...I'm BRCA 1 and 2 neg, nonetheless, a repeat offender- R breast ADH and L breast teeny early IDC.....BUT have been way high risk since my first screening mammo at 41.............HUGE relief to lose ducts lobules(time bombs)....pm me I'm happy to share more.....as my BS at home(MD Anderson breast surgeon, fellowship not familiar w/ NOLA) had issues......Guess I've been fortunate to have my early issues found/identified on the money.....I had been of the mindset " Choose the PS first"....the rest is a coordinated effort.....a highly specialized deal........Guess to me NOLA has SO much volume they wouldn't use someone unworthy......
OK...............anyone post stage one and two-DIEP.....and a ways out................I have been trying to whip myself into shape..... so, after 9 mos of no push ups or heavy ab work(but now going for it).......OMG my abs....so sore......swelling.....I am trying to figure if R side lower abd swellign more than L..........More than likely...I am horribly out of shape and not herniating my abs......Anybody....any similar experiences....Thouhgt OMG I'm feeling where he plicated ....or is it where the perforaters were? I dunno....all I know is....I am painfully not in shape BUT I did muscle sparing surgery for this reason.
Ok chicas.....nighty night have a great wkend!
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Got results from yesterdays blood work, and will be starting B12 shots next Thursday. Onc said iron was ok, but b12 was low...hopefully will feel better after that! Think I had rather take the b12 shots than the iron again.
Oddball, I had bilat mast at the same time as my diep. Dr D and Dr S (I think) were working on my tummy while the breast surgeon was doing the mast. This was my second bout with BC in the rt breast, and I wasn't willing to take a chance on getting it in the left. Had SNB with 1st cancer in 2001, so breast surgeon said it wouldn't work again, so took the rest of the nodes on the rt side. Already have lymphedema in side and breast, but luckily not in arm. (knock on wood!) Told them if they had to take rt nipple, to take both, so new ones would match when i get them. Maybe it is cause I still had tumor and they got me in asap, but I never sent pics be4 either.
Shay and Laughlines - You are on deck....come out swinging!! You gals will be great!
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Can everyone but me access Tammy's Snapfish URL to see the scrapbook? I can't get on!!
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Thank you everyone for the warm wishes and constipation advice!! I can't wait to post on the other side!
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Laughlines & ShayT good luck this week!
My advice on those 1st few days...It gets better & it goes by fast...before you know it you will feel great (if you arent already after surgery- So many do) And it will be hard to believe you just had Surgery.
Sally-im sorry to hear this news about your Sister.
I just got back from a short vacation with dh. We had lots of fun. Was nice (and Wierd) to take a trip without Surgery! Hard to know what to pack. LOL
Tammy- I cant get into your snapfish album either...Do I need to register?
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If ANYONE is willing to send me some pics, I would so appreciate it. You have no idea how helpful it would be...I am thinking about doing the hip flap and I am not sure if both docs do this equally or not??
I have consult and surgery scheduled with Dr. D, but thinking maybe I should explore Dr. S if he does more hip flaps?
Please PM Oddball1 and I will give you my confidential e-mail and phone number if you want to talk before sending them. I have a private e-mail and promise to respect your privacy.
Otherwise, if I could get the password to where you all post the photos that would be even better.
I plan to share mine when I am done!
I am scheduled to have surgery in July, so your help would be most appreicated!!
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My before and after pics are on this thread somewhere! I don't know how many back. So here they area again. Sorry to those who have seen them before! Dr. S was my primary doc.
Before: saline implants with capsular contracture on radiated side.
After Stage 1:
After Stage 2:
And finally Stage 3:
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Spring and Pam, I think you have to register to see the photos--that's what I did and it worked.
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I just hit the SEND button to send in my 4 photos to Liz at NOLA- I hated doing those but I know everyone does them and hopefully I will hear from them soon!
NOW I need a stiff drink I think!
Kristy
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Trishia-Your body shape and breasts are amazingly beautiful. Wow....thank you so very much for sharing. I think Dr. S did a great job!!! I really appreciate your help.
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Hey JenniferJane, great to hear from you! I have not had abdominal soreness from my working out, but have experienced swelling that comes and goes. When doing certain exercises, I can really feel how tight things are around the DIEP incision scar, and my trainer has commented on how tight my entire abdomen is when I am lying on my back and stretched out. I think I probably have a lot of scar tissue due to the seroma/pseudobursa problem I had, and I'm hoping that stretching will resolve the sensation with time.
Kristy, that's a huge step you took, and you won't regret it!! I like your name, BTW. My daughter is Kristie Ann.
We are hoping to plan some activities for the October NOLA meet up, so stay tuned and feel free to make suggestions too!
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