NOLA in September?
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Spring, would you please add me. January 5 - PBM at NOLA. Thanks!
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Intimacy Consultant! I LOVE IT! I would be honored to be your intimacy consultant!
Italy is my dream destination. I have visions of retiring in the hills of Tuscany in 20 years, sipping espresso and drinking a lovely red. Aahhh....
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Tishia! Me, too! Didn't you love the book Under the Tuscan Sun (way better than the movie!)? In fact, why wait 20 years. Go now, and I'll come visit!
3 weeks till my Stage 2. Looking forward to gitting 'er done!
Anne
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TRISHIA LOVE LOVE THE T SHIRT! I must have one!
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Trishia, I love your picture!!! What does the shirt say?
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*Sighs* I don't think I can retire at 38. Darn it! Why did I marry for love and not for money...LOL! (jk) I love that book too Anne.
I got the shirt on Zazzle. If you want the link, let me know and I'll PM it to you. Sandy made one on her site that has the same saying, but in crystals. So if you want it all blinged out, you can get one there too!
The shirt say "Yes, the are fake. The real ones tried to kill me." It makes me giggle everytime I read it!!
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My friend dates a guy from Italy (yes one of those long distance things) - she probably goes there 3 times a year... I keep thinking we will go and visit while she is there. The only place I a have been in Italy is the airport in Rome... LOL. Which was nice too! But we were on our way to GREECE - another beautiful place! (Well, not necessarily Athens, but we went to a handful of Greek isles too!) Paradise!!!
Okay, so if you are ordering shirts from Sandy - I think they may run a little big, or maybe I should have just ordered a medium to begin with! I order a large and was swimming in it! So, I washed it and it is a little better, but still a bit big. If I knew how to sew better, I would just take it in on the sides! So, my fault, I thought it might run small, so I ordered a size larger... SO, talk to Sandy, but probably order your size, not bigger! (and mine were the women's cut shirts). The BC support group went well, except my husband said I couldn't be mean to the doctor AND I didn't get to wear my shirt because it was too big!!! SO, I did ask some really good questions of him... mainly, he has started doing DIEP, but he is one of those that cannot guarantee that you come out w/DIEP and not a TRAM. Uh... hello. Which just lets me and anyone else know that he has not done nearly enough. Again, he spoke mostly about implants... (rolling my eyes), which is totally fine for women that want them, but what about the rest of us? It is okay though, when we had open discussion after he left - I told EVERYONE about my beautiful experience with NOLA and my lovely flaps. My PS here said, I should have just walked in and lifted up my shirt! There was one lady there that got info from me for the VLNT - I referred her to Dr. Massey's website since it has the most detailed info, and then another that wanted to see my boobs. She is a small woman and said that all the local PS have told her there is not enough tissue to do any kind of reconstruction. I referred her to NOLA's website and told EVERYONE about the stacked flaps they are doing. Yes, I got the floor for a good 20 minutes and gave all these women that had just heard an hour long discussion primarily about implants another choice for reconstruction. It was quite satisfying... LOL. Anyway... there you go.
Okay, so yesterday, I also had my appt w/the gyn/onc. He wants to do my hyst/bso via davinci surgery the first week of Dec.
On one hand, I will be thrilled that there will be two less areas for cancer to find a home and on the other I am devastated that we will truly be done having babies... Needless to say, I am having a much harder time coming to grips with this than I did having mastectomies... But there is no doubt that I am getting older.(shhhh!) I will just be happy when the day comes and I am not looking forward to another surgery! I will be thrilled when I can write a Christmas letter that does not say, "...and guess what kind of surgery I had this year!" Okay, off we go, got a crabby girl sitting here wanting attention... LOL ((((hugs everybody)))))
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Hello from Ct, I added your specs above, but am not sure what a PBM is?? I know what the BM is!! LOL. Not sure on the "P"!!! Welcome to our little group.
Nordy, I heard Davinci is the bomb.
Are you BRCA positive? They wanted to take my ovaries but I am not BRCA positive so am keeping them for now. (I know what you mean though, it is hard). Trisha, I am PMing you now with my ISSUE!!!!
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Nordy great job getting the word out. You could have run the whole show on your own. The best information is first hand by way of personal experiences and when you get to take a peek at the real deal that usually seals it. I remember going to a Force meeting where they had show and tell at the end. That is what convinced me to go with the flap surgery. It just looked so natural and the women were so happy with their decision.
Hey my last drain is finally (after over 4 weeks) getting lighter. It is draining less that 20cc but I want to wait until the end of the week to pull it and then I will be "DRAIN FREE"
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PBM is Prophylatic Bilateral Mastectomy. It is used often on the FORCE board and among BRCA postive women. Sorry you have to be in our little group HellofromCT. I'm a genetic mutant too. But not BRCA...I have Li Fraumeni syndrome.
Yeah for the drain lessening Macksix!!! I got my last drain out at 4 weeks and it was HEAVEN!!!
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Hi ladies. It is strange listening to excitement about wearing bras Since I have had implants for 20 years, I haven't worn a bra for two decades. When one implant was removed this spring and I had to wear a prosthesis, wearing a bra drove me nuts. I guess if I have to wear one once the surgery heals, I will get accustomed to it, but if I have a choice, I'd like to return to my camisoles.
BTW -- I never said why I am not getting surgery in Phila. There is a surgeon here who does the SGAP--although not freqeuntly. I went to him for my initial visit. He said they do not do the surgery bilaterally --I would need to have two separate sugeries. Because it is too complex? I asked. Because we do't get reimbursed enough to tie up two surgeons all day, he replied. You mean I would need to go thru two 10 hr procedures, two 4 day hospital stays and two 6 week recuperations? I asked. That's up to you, he said. You could always have one side with an implant and one side with your own tissue...
What an asshole.
My hsuband and I are covered by Independence Blue Cross (IBC). Hopkins and Flores are tier 2 out of network providers, so my out of network max is $2500. Allen's group told me they had expreince with IBC, and the likelihood of getting IBC to cover their physicians's fee was zip.
So Hopkins and Jaime Flores it is.
.Geetings to all and best wishes to Deejaboo on her surgery.
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OK all you NOLA grads. I would like to wish nurse Jamie at the center the best of luck and a speedy recovery. She was my day nurse for several days during my recovery and she was a doll. Not sure if any of you had her as your nurse but she is having diep surgery tomorrow so bring on all the well wishes.
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Jamie Gremillion? Nurse at St. Charles???? That Jamie?!?!?! Dark hair, super awesome, has the cutest baby girl???
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Thanks Spring...I should've just said Stage 1. I've been around (on the boards) since June, and this is where I've gotten a lot of my info about NOLA, so thanks to all of you for such detailed accounts!
Trishia, I've got ADH, strong family history and other risk factors. I haven't done the BRCA test (insurance won't pay for it) yet. I've never even heard of Li Fraumeni syndrome! Is it similar to BRCA? I have learned so much here, it's amazing. I swear, most of the women on here know more about these subjects than some of the doctors!
Looking forward to spending time here with all of you. I hope others will be in NOLA when I'm there--I'd love to meet everybody!
Suzanne
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Spring - No I am not BRCA positive - and I am triple negative, so it is not the estrogen factor. What I am is a BC survivor w/a strong family hx of both breast and ovarian cancer. SO... my doc referred me to the onc/gyn to make sure that everything was done perfectly - plus he does way more davinci procedures than she does. It is kind of a rude awakening, that my baby days that seem as if they just started are coming to an end. Of course I am happy and love that I have my two beautiful girls... but I don't think it is so wrong to have wanted more!!!! My husband tells me if we decide that we want more later on, that we can just "get some". LOL... ummmm... Yes, I am sure we can, but it might take some leg work, paper work... and luck!
Margit - I had a consult w/Dr. Flores back in May, because he was one of two docs in the nation that does bilateral sgap in my network. (which wouldn't have mattered now because my insurance changes at the beginning of the year and he will no longer be in-network!) He was very nice but I ultimately decided to go to NOLA. He did say that they only let him do one bilateral sgap a month because it ties up two surgical teams - therefore I am glad you are getting in sooner than later!
HellofromCT - you will be in the best of hands at NOLA! Who is your primary?
Stephanie... how is it that you are beating me to being drain free????? Amazing! Well, my right drain was only 14 cc today and the left... well we can't talk about that because it was only 4 but that doesn't include the immeasurable amount on the dressing back there!!!! Soon, though, very soon... I have an appt on Tuesday for them both to come out! So, let's all sing, chant, pray, etc. that those numbers stay down!!!
Have a great night everyone!
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Trishia, the misses tees are baby tees, with nice curves!! Juniors run very small, and you MUST use the size charts to make sure your purchases fit. We can say it a zillion times, but full bust is NOT the same as your bra size, so please follow the guidelines on the size charts as they are very accurate.
I'm sorry that I was absent for a couple of days. I've had tax returns to file, packing for NOLA to do, preparations for our 25th anniversary in a couple of weeks, and then yesterday we were gone almost all day/evening for a taping of a show that will run on PBS in March: "Change Your Brain, Change Your Body". Dr. Daniel Amen is a famous brain doc and he's my very good friend's nephew. He is an amazingly inspirational speaker and we learned so many things I didn't know about losing weight. For instance, vitamin D is critical. It is a very good appetite suppressant and not surprisingly, I was tested a couple of weeks ago and my level is low. Also, studies have been done that proved that taking Omega 3 capsules and exercising at least 45 minutes 3x per week will really increase your ability to lose weight as opposed to exercise alone. One of my favorite of his quips was "The whiter the bread, the faster you're dead!" Sugar causes inflammation in our bodies, leading to so many issues, like diabetes, cancers, etc. He talked about how toxins are stored in our fat, and also in the fat of the animals we eat, so every time we eat meat we are also eating all of the toxic stuff the animal ate. Filet mignon is very fatty----UGH! I haven't eaten meat for about a month, and will not be starting up again any time soon after hearing this. He talked about how crucial it is to get 7 or 8 hours of sleep every night. He has been treating NFL players because their brains are quite damaged with all of the impact they suffer, and a few of them were at the taping. It was so interesting and I am really looking forward to reading his book when it comes out. I took my vitamin D and Omega-3 last night.
Minnesota, my feet are good for running now! I use my elliptical with bare feet all the time, (must be a California thing--we do everything barefooted!), and never had a problem, so it didn't occur to me that a treadmill would be any different. Never again. See ya in NOLA tomorrow!!!!
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That sounds like a Great Show Sandy! All of those Points on Health are so Important...I tell at least 1 person a day how important VitD3 is...Unfortunately not many listen.
Nordy- Are you sure you are doing the Drain Dance right? Did you really wear a head dress during it...if not- You know it wont work!
Gonna get kicked off line in a sec....Will be back to finish reading.
Pam
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DEJABOO - you are almost there! Its almost time! GOOD LUCK! You will do just great, I know it! xxoo Mel
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Thanks Mel!
Yep! In 5 Minutes it will be Exactly 1 week from now- LOL
It seems a long time still...I know it will go fast.
I have a Busy weekend....And alot to do still here to get ready.
Pam
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Trisha and Hello, thanks for the PBM - I put the whole Prophylatic Bilateral Mastectomy above! Sorry, I should have known that! All I can tell you from the being diagnosed with BC camp is that I wish I was a PBM!!!
Trisha, I am gonig to have to look up Li Fraumeni syndrome. You learn something new every day around here!
MargitN - what a jerk!!!! Some doctors are pieces of work...
Stephanie, YAY YAY YAY YAY on almost having all draind out!!! Once you ditch that binder, you have to remember what it's like to wear underwear! ha!
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Wow....Once again miss a day and miss TOOO much. Ok fist things first:
SW airlines is almost finished have a 72 hour sale......12/2-12/16 and 1/5-2/10 are the travel dates. GREAT deal....most fares 50 bucks each way. Jackie my friend /housekeeper/caretaker coming w/ me told me about it and I booked both of us yesterday....remember bags fly free on SW...So this was an absulute no brainer better deal than AA or even AA frequent flier miles which I can now save, even tho I live a hair closer to DFW than love field. So....I forwarded all my travel info to Katie yesterday and it's all set!
Hello from CT! I remember you my ADH sister! Congrats on getting a date!
Dejaboo.....It's happening...fortunately you'll probably be so busy from now forward you won't have time to think about it until you get there...then it's OK...they are READY for it...but mostly you'll just have some peace...they will put you SOooo at ease! It's going to be (as Mel says)SPECTACULAR!
Sandy and Eve.......ENJOY! You guys will have an absolute blast! send/post pictures please!
Sandy...INCREDIBLY interesting...I genuinely believe all the no animal products stuff will go more mainstream.....my family poo pooed and ridiculed me last year after I read The China Study.
Also Sandy...My order is coming as soon as I finish here. I'm VERY excited!
Steph! yes, in regards to the Jaime's......there were 3 of them...I had all of them at some point...Can't remember her last name but she had short reddish/brown hair....she had stage 2 yesterday I think? She was triple negative and had found her lump while breast feeding her baby at age 33...... We talked a LONG time......She had stage 1 in may...and returned to nursing-patient care of BIG ADULT patients in about 6 weeks but part time....She was a HUGE vision of encouragement for me as I still do fear a bit getting kicked, or injured by a pt...mine are kids tho....and ya know sometimes they are worse than adults but that behavior is more acceptable because many just have not the abilty to grasp what is going on....reason for family presence at ALL times, to soothe and make the child more comfortable...not to mention make my job doable...I have NOTHING to hide....Ok, ok, ok, sorry I'll stop!
MargitN I think you should consider NOLA and I bet everyone else here seconds me! If nothing else CONSIDER! Don't sell yourself short, you will NOT be sorry! Simultaneous bilateral Gap- I think they patented it at NOLA....Read Kathy Steligo's book, she'll tell ya all about it!
Well I just wanted to let you all know Martha(Stewart) is back, but she is significantly more compliant. I had my team leader over yesterday...we had such a great time and of course she was fascintaed. I have shown my breasts to more people...our educator who came over last week just said...What else do they need to do? They look perfect. At any rate I shopped Sam's yesterday(w/ assistance) and am almost ready for Halloweekened. Love this time of year! Anyhoo. I am abiding by nothing>10 lbs still and thank God Jackie did the floors yesterday...It was making me crazy.
I'm planning on returning to work 11/17....2 more weeks off...and I think I'll have no restrictions? LE therapy continues, and progress continues! I have a couple swell spots on order...WTH...I'll try anything....stage 2 is 6 weeks from today! Woo hoo! Have to call NOLA and chit chat, get more info and extension on leave/disability.
Ok, that's it...Sheesh...that's more than enough...as usual, ya always get bonus from me!
cheers!
xoxo, jennifer
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Oh yeah, Nordy....Honey...I get you...I have to schedule my f/u on ovarian cysts...actually need to go do that now as I was to f/u in 2 mos from August 28th! Dread, but hopeful and praying it will be relief to get that done.
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Sandy and Eve, I hope you both have a great time in NOLA!
Thanks Jennifer...I remember you too! I'm glad to finally have my date!
Spring I know what you mean about the P. I hope the surgery will stop anything further from developing.
Nordy thanks for the encouragement...I feel really lucky to be going to NOLA!
Have a great day everyone.
Suzanne
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Leaving for the airport in a few minutes...Pam, I'm sending you a PM with my cell number so we can see about possibly meeting before I leave NOLA.
Jennifer, Dr. Amen mentioned the China Study at the taping. There is so much we can do to improve our health. Minnesota and I will take photos and share on Facebook! My DH and I are supposed to try to find her and her DH on Bourbon St. tonight.
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HellofromCT--the NOLA PBMs are spectacular!! I've seen several in person and it's almost impossible to tell that a mastectomy has been done. You'll be in the very best of hands!!!
Sandy
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OMG...I am SOOO excited. Glad maybe Sandy and Eve may be able to hook up w/ Dejaboo/Pam....what better people to meet?
Hello from CT>>>>>>>It's ALL good!.....I was 41 and perhaps in total denial...then lo and behold I came up w/ IDC (sheesh, only visible by MRI and required MRI guided biopsy....<5 mm...still it was IDC=INVASIVE- caught small and caught early TRULY by the GRACE of GOD...and diagnosed on my birthday-a Saturday?!....ENOUGH!) 2 yrs later.......nonetheless....retrospectively.....YES...ADH is a sign, esp when you have ovaries cranking out estrogen...so girfriend hats off to ya! This will be a VERY good thing. I support you wholeheartedly...nice to be able to learn from others or live thru them vicariously.............NONETHELESS!!!!! Mine was technically prophylactic too....even tho I had 1 issue per breast in 3 years, even before I turned 44...(last year!)....my scars aren't too bad and HEY! Those oldies(scars)... will even be revised at stage 2 in DEC! Hello from CT/Suzanne....you are ahead of the game! GOOD for you!
I have all my appts set...next week and the week after...check, check, check!...hair, shrink/counselor, GYN...Ovary recheck then bone density scan...(for premeno on Tamox)...I checked that it wasn't to look for mets...nonetheless....those two are anxiety provoking....Praying a good result will lift me up...or KEEP me up! The next week will see the family practice MD for flu vaccine and to attempt to decrease effexor.....I think it's a-ok...for the love of god- I'm WIRED! lets back off!
Waiting to hear back from CRBS to get med leave extended for 2 weeks more and disability extended too...I've earned it! Will go back to work full speed (God willing) 11/17.
Sandy bear w/ me...tshirts on hold ...again! I've also been on the phone w/ anesthesia and pathology...those bills are separate....just like they would be at home....DUUUh! nonetheless....I'll pay pathology tomorow and anesthesia was A-ok w/ a payment plan....as long as they get something monthly...I CAN do that! Meanwhile the plan w/ Lanita continues...I'm just getting started but WILL pay every penny and they have been up to snuff/ honest Abe/spot on w/ the original promise( eeks! despte the fact I stayed 3 extra days in the hospital!...But I was a VERY easy pt...almost self serve!).
OK, that's my update...safe travels!
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Margit - I kind of agree w/Jennifer on you going to NOLA... but it is your decision!!!
Jennifer - you are always a mile a minute girl!!!! Have you scheduled that follow up yet?! Why is it that ovaries have to be such a hassle????
... here comes that drainy day feeling again...
And soon the drains will be far and away...
Looks like Monday I can say adios, good riddance and buh bye to these two appendages!!!! I cannot wait!!!! Woooooohoooooooo....
Pam - no I didn't buy the feather headress, I must admit... now I hope that doesn't jinx me over the weekend... You are getting SO close!!!! woooohooo!!!!
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Never mind, it is Tuesday that my appt. is... wishful thinking I suppose...
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Nordy, which adorable daughter is that? Or is it you in an old picture? VERY cute!
Yes, my appt for ovary recheck is Wednesday 11/4 at 215 pm. I have no symptoms..no bloating or otherwise...then again people w/ issues don't...but we don't think there are issues just cysts...and maybe NO cysts this time? who knows? The bone scan follows at 4pm in the same bldg.
Glad those drains are on their way out....sheesh!
Oh and Nordy you'll be thrilled to know I rec'd my swell spots by mail today.....I am sporting all 3 of them! OVERkill, but WTH...this swelling is going, going, and soon to be GONE. A bit nervous I'll have to start over after stage 2 BUT, probably not like a couple weeks ago...It's OK...It will be worth it!
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Thank you! That is my baby... and me having fun with my camera and picassa.
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