Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Take our poll: Caregivers, what do you find most difficult about caregiving?
Weigh in: What are the best and worst gifts for people with breast cancer?

NOLA in September?

1…4849515354…908

Comments

  • Nordy
    Nordy Member Posts: 1,106
    edited November 2009

    http://www.npr.org/templates/player/mediaPlayer.html?action=1&t=1&islist=false&id=120537928&m=120538107

    The link above is about the new guidelines... 

  • Nordy
    Nordy Member Posts: 1,106
    edited November 2009

    One more thing.... teehee - the info on that new device

    http://www.dailypress.com/news/dp-local_tech-dilon_0707jul07,0,3896582.story

  • Gin52
    Gin52 Member Posts: 272
    edited November 2009
    plainjane64 - You are right.  I figure the sooner I have the chemo and get that out of the way, the sooner I can go back to NOLA for Stage 2, and hopefully get whatever I gain from chemo removed too!  Now that I think about it, guess it does sound a little crazy to be "wanting" to start chemo! lol  But, aren't we all a little crazy from dealing with this monster? I KNOW I am!!!   Tongue out
  • BettyeE
    BettyeE Member Posts: 136
    edited November 2009

    Hey girls,

    I remember reading that some of you want to move to New Orleans.  My brother just happens to be a real estate agent there.  If anyone is interested PM me and I will give you his number.

  • Nordy
    Nordy Member Posts: 1,106
    edited November 2009

    okay... I just posted something to Gin on here and it disappeared into thin air... LOL. Anyway, Gin52 - I was saying, you will do great w/chemo... one treatment at a time! I couldn't wait for mine to start either, once I finally had a diagnosis!

  • Trishia
    Trishia Member Posts: 361
    edited November 2009

    Hi ladies,

     I'm in Seattle.  My son and I go see the genetics doc tomorrow.  I'm not 100% sure what all they will do tomorrow, but I have a list of questions and am anxious to get a surveillence plan in place and to see what she thinks about my CTA results.  I'll let you all know how it goes!!

  • holtbolt
    holtbolt Member Posts: 302
    edited November 2009

    Anne.... congratulations on a successful Stage 2.... I'm really happy to hear the success stories! 

  • plainjane64
    plainjane64 Member Posts: 521
    edited November 2009

    Gin...you are NOT crazy...you are sharp and spry and lovely!  and we want to hear how all goes every step.

    Spring, I did NOT get a dominatrix outfit....BUT...I did receieve a 'Dr Massey bra'...that appparently was new in Nola...the first pretty black ones, i still have too but was having a heck of a time one night and those fabulous nurses dug those white ones out for me.  That said I HOPE since dr. M is there when I am   and she brought her stuff or had Nola order and I might get a more comfy whatever i'll be told to wear?

    Besides revising breast stuff and? fat necrosis  I have the word was he 'would lipo my hips and all' at stage 2.....that was a big selling point when I was deciding DIEP instead of GAP.  So I just had bra and abd binder in Sept....Dunno....can't immagine they'd flip me.  Really hoping to lose saddlebags. No they're not horrible but...........It's ok, I will be happy regardless!

    Mel, where do the corn grits come from?  I know we will be going to Fleur de Lis for breakfast brunch...............OMG the best biggest breakfast...very splittable.

    I guess I can count my blessings my initial calcifications showed but warranted MRI...who the heck knows.  Nordy I may have heard that same show?  OK, I'm letting it go, for now, or at least here.....I promise not to stir up anymore... serious.

    I am REALLY back to work today. It appears I have not had a TB exposure but need a blessing from the employee health RN.  It is TIME, really!

    Trishia, love and prayers on your visit.  I hope those people can do you both some good.  does your son carry the same gene (Frau limen...sorry forgot spelling).

    have a great thursday all!

  • melaniew1
    melaniew1 Member Posts: 209
    edited November 2009

    PLAINJANE - Corn Grits + Zea's = HEAVEN!!!!!!!

  • SandyinSoCal
    SandyinSoCal Member Posts: 559
    edited November 2009

    Another really great place for breakfast is Camellia Grill.  You can hop off the  St. Charles streetcar right where it turns to go down Carrollton and enjoy a delicious omelette and waffles LOADED with pecans.   The place has quite a history, too.    Oh, and a local Dr. D patient gave me the recipe for Zea's corn grits, so we can have a bit of heaven at home!

  • melaniew1
    melaniew1 Member Posts: 209
    edited November 2009
    SANDY - You must share the recipe!  Also did you try their collard greens!  WOW, so good, and a GREAT way to get things moving again.........if you know what I mean (wink wink) 
  • Dejaboo
    Dejaboo Member Posts: 761
    edited November 2009

    I could use some Collard greens -If you know what I mean.  LOL

    Things still are not moving here.

    I have my stage 2 set (not in stone-but pretty sure)

    Feb 17th in Charleston with Dr M.

    I will need places to stay suggestions if anyone has them.

    Anyone recall what their drains were putting out around 2 weeks (thats me today!)

    Mine are still at 100ccs.  Sounds high to me.

    Pam

  • wahine
    wahine Member Posts: 7,590
    edited November 2009

    Hi gals! I just am popping in to see how Pam is doing, since we go way back to our dx in spring 2008. And I hope things start moving soon!!!!!! That can be a real PIA (literally!). Pam, my drains put out way too much and so I had a couple of them still in for 5 wks, which was miserable. OF course, I didn't stay still and did a lot of stuff. I have since found out from others that just relaxed and tried not to do very much, that their drains came out faster. So maybe if you try to lie around more, that the output of your drains will go way down. I sure hope so!!!! Not sure how scientific that is, but that is the consensus from others I have heard from. Anyone else have any ideas about that?

    Hope all of you are doing well today. I wish I had gone to NOLA for my bilat mast and recon, as it seems they treat you so well there. Gentle hugs to all!

    Kathy

  • anniese
    anniese Member Posts: 69
    edited November 2009

    Hi Pam - at two weeks my drains were still putting out around 120ccs per day (each).  It wasn't until around 5 weeks that I dropped down to around 50ccs per day (each) - then, of course, the output went back up and I eventually had them pulled at 7 weeks while they were still putting out around 50 and 100 ccs respectively - got aspirated/drained 3 times after that.  Oh, and about staying still to decrease output - it didn't work for me at all! 

    Plainjane - would love to see what the pretty black bra looks like.  I was one of the first Dr. M patients at NOLA and had the white cotton bra (no dominatrix for me) - they must not have had the pretty black one yet.  It will be interesting to see what Dr. M puts us in after Stage 2 - whether it's the center's dominatrix or something more like what AnneW had in Charleston. 

    Getting down there on the count - only two and a half weeks to go......  Still feeling anxious about this - more so than Stage 1, go figure(?).

  • melaniew1
    melaniew1 Member Posts: 209
    edited November 2009

    ANNIESE - You are gonna ROCK!  Dont worry!  :)

  • Springtime
    Springtime Member Posts: 3,372
    edited November 2009

    Pam, I am not a juicy drainer, mine were in 20's by 2 weeks, though I was told to keep the butt ones until the 3 week mark. The Ab ones were in the teens. All my drains were gone by 3 weeks. Everyone is different. From what we learned here, you want those drains to stay in or else it is uncomfortable and a PITA - meaning you have to go to doc or hospital and get them aspirated!!! I don't think what you have is abnormal. You're just going to keep them for a bit longer it sounds like. The rule of thumb is 2 days below 20ccs for the Ab ones and 2 days below 30ccs for the butt ones. 

    Sandy, are you willing to share that recipe? :)

    Pam, have you tried MiriLAX? and if that fails, a fleet suppository! That will get things moving for sure. (I have these in my post surgery arsenal).

    Week and a half for me. Dec 1 is my stage 2! I can't wait to have this over!! I decided to have a post stage 2 surgical appt before I leave town on Friday Dec 4. No docs in the office that day, so Katie is letting me see one of the nurses. Actually, I bet you can get good info from the nurses there!! Plus, BreastCancerDiva will be in the hospital so I will go visit her that day. She will be on her 3rd day post op, so should even remember I was there! LOL. 

    Pam, I added your stage 2 to the list.... 

  • melaniew1
    melaniew1 Member Posts: 209
    edited November 2009

    OMG!  SPRING - you are almost on deck......just inches away!  So excited for you and I cannot wait to hear all about your stage 2, but I am thinking yours may be a little more involved than mine will be due to the incision be moved down.

    TUMMY TUCK IN STAGE 2??

    Does anyone know the difference in DIEP versus having a tummy tuck, I have seen several people mention having a tummy tuck in stage 2.  What is that all about?  I mean how would you know that you needed one? 

    Also I read somewhere on here that in Stage 2 they might not want to turn you over for lipo on the back area.  What about those love handles that we have....with ZERO stomach to match it.  Looks almost silly.  Any insight on this subject for stage 2 gals?

  • sunandsandgirl
    sunandsandgirl Member Posts: 23
    edited November 2009

    AnneW

    Glad you have completed stage 2.  There is nothing but bright sunny days ahead now.  Yes, walking and fluids will quickly take the lipo discomfort away.  I might add throwing in a little yoga when you are cleared to assist everything into its new home for a new perfect shape.  I am now almost 5 months out. I cannot be any happier.

    Best wishes to all out there having surgery. 

    sunandsandgirl 

  • Dejaboo
    Dejaboo Member Posts: 761
    edited November 2009

    Wow,  Dec is coming fast...So many of you have your dates for then...I still feel like its the beginning of Nov!

    You know I will be full of questions about stage 2!

    Thanks Wahine- The drains for Flap surgeries do stay in a pretty long time...So Im not trying to slow them down.  just wanted to see where I was at next to others.

    I figure if I take it easy & my drains slow down...They will just pick up when I get more active.  So I just do what i do each day.

    Thanks Spring for gettign me on the calendar!

    Trish- Hope Your Appt went good today.

    Pam

  • Nordy
    Nordy Member Posts: 1,106
    edited November 2009

    Trish - I wish I could have met up with you today. I really hope that all went well and that you got some good information from you doc.

    Pam - sent you a PM and email... My doc recommends Miralax also - but I haven't tried it yet. Will let you know after the 1rst of Dec. if it works or not. Also, Pam - I think part of the reason that your hip drains, and mine, and Anniese stayed in so long is the amount of tissue that they took from there. I posted a question to Dr. D and he said the more tissue that is taken and the higher the flap (hip vs. standard SGAP in this case) the more fluid they produce. Since all of our tissue was taken from our butts for our flaps (vs stacking?) I think we will inherantly produce more... plus I think I am just juicy. Right now I still have some fluid buildup but am really really compressing it - and it has gotten smaller and less painful. I am so tired of being poked at!

    Had repeat CT today - and preop blood work yesterday - more pokes... Will know more next week. 

    Sandy - Please share the grits recipe!!! 

    Wow everyone... you guys are getting SO CLOSE!!! I can't wait to hear all of your stories after your stage 2's!!!

  • Jaimieh
    Jaimieh Member Posts: 925
    edited November 2009

    Pam besides the drains how are you feeling at 2 weeks out ??  I am really interested in how you are feeling because I will hopefully be having SGap in January.  BTW, Miralax is great and you can add it to juice and not taste a thing.  I have had "issues" in the past and  it seemed to take care of things without leaving me sitting all day. 

    I am still waiting to hear from my insurance company :(  BCBS was supposed to have someone in member services call me and I still 1 week later have yet to hear from them...ggrrrr.... 

  • melaniew1
    melaniew1 Member Posts: 209
    edited November 2009

    NORDY - I hope the CT turns out good!  xxoo Mel

  • Dejaboo
    Dejaboo Member Posts: 761
    edited November 2009

    I also forgot I have MOM.  I did that after my Hyster & it helped alot...Well too much.

    (And I did finally go today- Got that everyone!  LOL)

    I guess these drugs still have me not thinking very good.

    Thats right Nordy- I recall that info about the flaps & drains.

    Sure hope your scan & All is good.

    Jaimieh- I feel very good at 2 weeks. (today I hurt more then yesterday)  I really never thought I would feel this good til about 4 weeks.  Granted I am still taking a pain pill every 5 hrs.   But I was doing that with my BLM/expanders  & felt like total crap.  I am able to do lots of stuff...Except the weight restrictions, etc.   Getting socks on is a bit hard.  But thats getting easier too.

    Id say if I didnt have Drains-Everything would be great!  LOL  (they hurt & are a pain to dress around) I had never been out of my house in Yoga pants before...I dont like that- LOL

    Pam   

    Pam

  • melaniew1
    melaniew1 Member Posts: 209
    edited November 2009

    YEAH PAM!  You are doing SO GREAT!

  • Jaimieh
    Jaimieh Member Posts: 925
    edited November 2009

    Thank for the great update Pam :) 

    Is it true that you should try to eliminate Cafeine before your surgery ??

  • Nordy
    Nordy Member Posts: 1,106
    edited November 2009
    Pam - Yoga pants = WAY better than sweats... Laughing
  • Warrior517
    Warrior517 Member Posts: 240
    edited November 2009

    Nordy..saying prayers for CAT scan!

    Pam..YOU ARE HOT!! YOU are doing great....its all a process and we are all right beside you!

    I am 3 weeks out!! I have set up a conference call w/Dr.Massey for this weekend to answer all my Stage 2 Questions...will keep you posted.

    Spring...NOLA already?? You have no fat to lipo! I am sad I won't be with you this time but you will be in my thoughts, my friend!!

    Mel..I THINK the diff between a tummy tuck vs diep is the diep just removes fat and skin. In the tummy tuck, they actually sew your ab muscles back together...could be wrong. Interested in what other girls have to share, too!!

  • macksix6
    macksix6 Member Posts: 125
    edited November 2009

    OK ladies I got the ultimate complement today. I saw my oncologist for my follow up with my pathology report for BM. Everything is great! I was so surprised by his reaction to my new breasts. He was amazed at how good they looked. He asked me who had done the surgery, where and if I had any cards for the center. (I will have to get some cards from Katie) He wants to recommend Nola to his patients. He even asked if I would allow them to take some pictures, which I did so that he could show his patients.

  • melaniew1
    melaniew1 Member Posts: 209
    edited November 2009

    YEAH MACKSIX6!  that is wonderful!

  • plainjane64
    plainjane64 Member Posts: 521
    edited November 2009

    Gosh girls so much...Anniese?  You asked about black bra?  I think it's a Dr D thing?  I know Mel had one too?  I had/have qute the variety.

    Nordy, hoping praying re the CT results girl and anxious to hear back from Trishia.

    Work was a mixed bag yesterday.  Me: I remain on cloud nine.  Most people so happy to see me again.  A couple buzzkills that I'm not dwelling on.  It...I..... will be OK, I'll leave it at that.

    While I'm still happy about my breasts I am concerned and will be sending in some photos to CRBS...Left just orange peelish toward the cleavage and seems to stay and skin feels...like its been radiated?  hard and stuck to underlying....maybe this is fat necrosis?..R feels soft almost like nl breast.  L....I am somewhat cursing myself for being radiated....deep breath....surely...hopefully something can be done...Sorry don't mean to unload should be describing to celeste I'll let you all know, anybody else w/ similar?  It is warm has brisk cap refill...just if I were to be groped or grope myself (LOL!) it's a little freakish...............I know if anything can be done to make it better it WILL be!  Still NO regrets!

    TGIF!

    Sandy, Oh yeah I remember you talking about that place w/ the pecan waffles?  I need to check it out.............

    cheers

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.