Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Weigh in: What are the best and worst gifts for people with breast cancer?
Share with us: What are your proudest moments of 2024 and personal goals for 2025?
Take our poll: How are you feeling as we near the New Year?

NOLA in September?

12467…908

Comments

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

    Melanie, good for you about having your medical records sent! I know what you mean though, the closer I get the more I am like "holy cow" to myself. I just have to focus on what it will be like to be *beyond* all this surgery and recovery. With beautiful permanent ta-ta's :)  :)  :)   

    And yes, you can have your husband stay with you at Hope Lodge. He can also stay with you in the St. Charles Hospital - They'll have a Murphy Bed for him, so no hotel costs/ or he can check out of Hope Lodge during the time you are in "the hospital".

    I updated your info in the opening statements above.... 

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

    Thank you Spring!!!  I can't believe how many of you are going to be there in Sept!. I am glad Anniese will be there when I am, and another lady from another website will too - so I won't be alone! My insurance just approved the CTA today... whew! Just jumped over another hurdle!

  • plainjane64
    plainjane64 Member Posts: 521
    edited July 2009

    Wow!  Beverly, you are good, very organized w/ those dates and all of it...chemo brain...NOT....I don't think so!  Thanks for going to the trouble...did you have to go back and re-read thru...Oh man how else would you get all those details?!

    Melanie, yes, your husband or caretaker can stay w/ you at Hope lodge...I think it's required? we have someone w/ us...at least going home?  didn't I read that?

    Uuum yes, I'm starting to get a bit nervous.....2 mos away...  Saw my work schedule w/  me off the schedule starting sept 21 and a big FMLA across it...GULP....I haven't had to deal w/ anyone being really nosy yet but I've decided if they ask I will  just say 'I'm going to Europe!", which should translate into MYOB. 

    off to bed

  • plainjane64
    plainjane64 Member Posts: 521
    edited July 2009

    Nordy what is CTA?

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

    CT Angiogram - they inject you with dye (at least this is my understanding) then put you in CT to look at your vascular system to assist them in finding the appropriate vessels for your flap. They are doing mine the day before surgery in NOLA.

  • Warrior517
    Warrior517 Member Posts: 240
    edited July 2009

    Thank you , Beverly for all your hard work.

     Why am I up at 1:30 am when I have to drive 9 hrs to St Louis in 6 hours?? arrrghhh lol  I talked w/ the insurance gals at NOLA and Masseys. They are trying to merge the two offices so no final figure but they said to forge ahead w/travels arrangements. Booked my flight. Booked my Moms (she comes in from FL to watch my kids for nearly 2 weeks..arrgh) I need to get my pre op appts booked now...6 weeks and counting (rt Bev?) lol Need to book hubbys flight too..he works in St Louis during the weekdays..(very hectic household)  I havent decided which hotel/Hope Lodge etc..it will depend how much I have to pay upfront and once I add up all the flights. I also will be having a friend fly in to "bring me home" since hubby has to go back to St louis...I guess I should look at all this alone time w/DH as a second honeymoon w/no sex ...lol!! Nite Sisters.....

  • Warrior517
    Warrior517 Member Posts: 240
    edited July 2009

    Ha ha Nordy...you are being a night owl , too!! lol

  • SandyinSoCal
    SandyinSoCal Member Posts: 559
    edited July 2009

    Yes, Melanie, your husband can stay with you at Hope Lodge. You will be in the best of hands at NOLA!!!!

  • SandyinSoCal
    SandyinSoCal Member Posts: 559
    edited July 2009

    I meant to edit that and not delete it, but wanted to congratulate all of you on getting your surgery dates.  You'll be in the best of hands in NOLA!

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

    Thanks Sandy! You are right, we should congratulate ourselves! I am nervous too, but I know this is the place to be and what I need to do. <<gulp>> !!

    Warrior, how old are your kids? I had to crack up - "2nd honeymoon with no sex" - LOL!!! You mean you'll not be in the mood for sex after this surgery??? LOL... even if you were all the drainage tubes would be in the way. WHAT A THOUGHT!!! blech!!

    Nordy, I did not realize they inject you with dye, but it makes sense. Is this done at the appt the day prior to surgery? I wonder if they'll have to do 2 "sites" for Warrior and me - given we're having both belly and bottom... yikes. 

    Jennifer, I know what you mean about getting nervous. I am working through Aug then off, and am trying to finish up all my projects or get them ready to be turned over... and I have all this summer vacation too, about which I am NOT complaining.... but it will be here before you know it. It makes me feel sometimes like I should "run away" but I also just want this over with. A strange mixture of feelings!!!

    Warrior, when is your stage 2? Do you have dates for that??

    Spring...

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

    Sandy - I think you are absolutely right!!!

    Warrior - I have 2 kids too - I am leaving them w/my sister-in-law and her hubby and their 3 kids. (sniff, sniff... I have never been away from them for more than a couple of days...)  And second honeymoon - yes, that is what my husband seems to think it is. He is already planning all of our sight seeing! I told him, I may not feel up to too much entertainment right after surgery - but he also knows me and there is not too much that keeps me down for too long. I usually have to be careful NOT to do too much!

    Spring - I would imagine that one CTA is plenty as the dye goes throughout your vascular system, so they should be able to get a good look at everything with the one scan.  They do that the day before your surgery, and with me, right before I meet w/Dr. Sullivan - so I would imagine it is the same for most everybody. This way they know where to draw your lines for incision and be able to retrieve the veins and arteries.

    And to all: I am just as excited, nervous, elated, panicked as everyone else. It is definitely a mixed bag of emotions... but my thought is it is now or never. I worry about the future of healthcare in our country... and to avoid getting political I will say no more - but things could either get better or worse... so at least right now I know that I have the right to reconstruct and I am sticking w/my decision to have the surgery now rather than wait! BUT...  less than one month away for me... 4 weeks from today... Tick tick tick....

  • plainjane64
    plainjane64 Member Posts: 521
    edited July 2009

    Yes, time does tick...but hey I got 2 more mos!  OMG right this minute I am looking forward to TIME OFF(among many other things).......I need a break.  Work has been a true beat down lately....all this new stuff...and bigger is NOT always better....ok, sorry.......  So one of my dear friends(from work!) who always makes me laugh and smile got her time off sorted out for me today-she'll come (I hope) the day of discharge and stay and help get me home.  Her husbands family live in NO. We found someone  else at work to cover her shifts....and YES,we told her we're going to Europe and  "she has to help me get home" excuse.  Of course the other woman wanted to know why I didn't ask her to go to Europe.....I knew it would work! I also have the ride home from the airport and first few days home figured out as far as help/people to stay....I have been single/independent SOooo long...VERY hard, but necessary to ask for help.  Plenty of plans for the weeks off from work/recovery time and as much as I'm a go/do/see person...I can't wait to just, sit, relax, read, talk, watch TV, heal, etc!

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

    Jennifer,

    Going to Europe!!! You crack me up!!  Ladies, did you know we're all going to EUROPE!!!!!  

    Jennifer, you're going to have to find some European momento to bring into work!! LOL...

    Nordy, thanks for the info on CTA. Katie did send me an email about arranging my limo transfers and also hotel, etc., and it was listed in there as one of the things I'll do the day I see Dr. D, day prior to THE TRIP TO EUROPE!!! (LOL!!) So they inject you with dye, basically, and then do a CT scan of your whole body? is that it? (Is it similar to the nuclear dye we got before our Sentinel Node Biopsies??)

    Spring.

  • plainjane64
    plainjane64 Member Posts: 521
    edited July 2009

    YES ladies, It's a EUROPEAN vacation!  My Girlfriend at work who's helping me out thought funny too.  Hey I have to choke back a laugh when I say it!....Had to be something random that.... only those of us "in the know" would get  - code word:  EUROPE!  Besides you can go topless in europe and people aren't as uptight right?  So what is everyone else doing to get their passports in order? 

    So I guess the need for CTA is done on a case by case?

  • AnneW
    AnneW Member Posts: 612
    edited July 2009

    I had MRAs done (like CTA but using MRI rather than CT scan.) even though I was scheduled for SGAP, I had MRA's of both the abdomen and pelvis. The results helped Dr. Massey know where my best gluteal perforaters were, and if anything went wrong with that end of things, we knew where the good ones were in my tummy.

    Anne

  • plainjane64
    plainjane64 Member Posts: 521
    edited July 2009

    Thanks Anne, good to know.  No one has said anything about either to me so far.  Guess I'l know more soon enough.

  • plainjane64
    plainjane64 Member Posts: 521
    edited July 2009

    Bump

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

    Hello all you cuties!!!

    I can always tell surgery is getting closer when I start to have dreams about it. (!!!!) ugh. I guess the anxiety needs a way to express itself!!!! Is this happening to anyone else? If no, forget I ever mentioned it! I don't want to give your subconsious any ideas!!!! lol.

    Does anyone know if we're supposed to stop taking Tamoixifen prior to surgery? I am thinking no, but then I thought I read something somewhere. It's not mentioned on the list in the NOLA packet...

    Spring.

  • Warrior517
    Warrior517 Member Posts: 240
    edited July 2009

    Hi Beverly,

    Dr.Massey has me stopping Tamoxifen 3 weeks prior and 3 weeks after. She had me send her a list of all meds, including supplements and told me which ones I could /could not take.

    Also...GOOD NEWS!! Heard from Insurance FINALLY and all is ago!! I need to call Katie (I think thats who) lol to set up travel...I will be staying at the Homewood Suites,too!  (Is the rates accurate on the NOLA website??)

     Now its getting closer. Did you do your chest xray etc yet????

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

    Hi Warrior,

    Yes, I've had all of my testing done and sent off to NOLA. I had a GP appt right after I got my packet, and so they just did all the stuff listed, they were going to be doing most of it anyway.

    Katie emailed me and I've sent her back all my "plane" info, so she is setting up my hotels and my limo transfers. !!! it is getting closer. ahhhhck!!!

    Yes, I believe rates are accurate at NOLA's web site. $99 for the homewood is a deal. It is a really nice suite. You'll see!  I will be at the Moneleone inside French Quarter prior to surgery for 2 nights. Wanted to experience that. Then 4 nights at St. Charles. Then will be in the Homewood!!! I'll get there one day ahead of you. 

    Thanks about the Tamoxifen info. I have sent them an email asking if I should stop Tamoxifen... it was not listed in my "surgical packet" as something to stop. What other supplements did she say you could not take?? I think I will send them a list too. I have a list, may as well use it. 

    Spring.

  • Nordy
    Nordy Member Posts: 1,106
    edited July 2009
    Ladies.... we are getting so close... OMG. I mean, you guys are getting close... and I am even closer. I can't believe it and I am a whirlwind of emotion. Holy cow. To have breasts again... even if I don't have sensation... just to not have to hang my boobs in my bra on the door at night.... or box them up. Not to have to worry about floaters in the pool Embarassed, not to have to worry about my daughter pulling my shirt down when she is climbing on me and have my flat/concave chest exposed to the world. I cannot wait. I hope and pray it all goes well... 24 days and counting...
  • sunandsandgirl
    sunandsandgirl Member Posts: 23
    edited July 2009

    Good Luck to all of you ladies!  I will be thinking and praying for each and everyone of you.  I finished my stage 2 at  NOLA in May.  I am so happy with the results.  It is an ordeal to go through, but it is so worth it.  I feel like I am getting my life back now!!  Rest assured that they will take wonderful care of you.

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

    Yes, I have heard from other "NOLA graduates" that you feel utterly "restored". Thanks SunandSand Girl!!!

    Nordy, you are gonig to love love love having your ta-ta's back! 

    I sent (via email) all my mediations and vitamins and supplements and waiting to hear back.  I am curious what they say about Tamoxifen given Dr. Massey is taking Warrior off it 3 weeks prior and after surgery. Warrior, is this because of risk of something? 

    Spring...

  • plainjane64
    plainjane64 Member Posts: 521
    edited July 2009

    I think I asked someone else that question on the august thread?  And I'm pretty sure it's a Dr. Massey thing but I am curious to know the rationale behind. 

    I have the mixed emotions thing going on...No dreams yet.....An old friend said to me yesterday 'but you have great boobs'....so ok, maybe they appear ok thru clothing....maybe my nickname used to be sweater girl, or jugs... but reality-  They've each had a partial mastectomy one for bad, the other for worse+ radiated.  Get this badness outta me!...don't need any ducts or lobules serving as magnets for disease.  Sort of feel like thru the miracle of modern tecnology and maybe some divine intervention I've been lucky/spared early from what could have been-or could in the future be MUCH worse-  So-ONWARD!  plus.Hey....I will be improved and all thru the same scars i'd have w/ a lift?  Why do i need to think about this?!  Also if my mind wanders to the last mammo/MRI 6 wks away(because my surgery is exactly 8 weeks from today!)   that's all the motivation I need.......crazy but true....praying already that all will show clean.

    Bought vitamins yesterday, and now very conscious effort to exercise regularly and eat better.

    So, Monday I will ask Dr. d about the tamoxifen...but I bet you'll have an answer before then.

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

    Jennifer Jane, I have had no regrets about bilateral mx. It just was too hard to manage my breast tissue, it confounded everyone. When I woke up, I thought, That's it! Most of my breast tissue is gone gone gone. No more mammo's, No more breast MRIs with contrast, etc. I think you will feel liberated and lovely. :)  Stick with us and let us know how you feel in the end!!! :)

    Please report back on the Tamoxifen! I have been wondering if I should just stop it myself... we'll see.  I am curious as the the rationale as well...

    Spring.

  • Warrior517
    Warrior517 Member Posts: 240
    edited July 2009

    I know Tamoxifen has a very long half life so it is still in the body for a long time. I will leave an email for Dr. Massey to ask for an explanation. Also, I am going to start a new thread..titled Preparing for NOLA....Lets gather input from what to pack to healing affirmations all in one place!

  • anniese
    anniese Member Posts: 69
    edited July 2009

    Hi - I'm on the August thread and I think I was the one that mentioned having to stop taking Tamoxifen.  I did check back with Dr. Massey's office and they ask you to do this because of possible blood clot issue.  I guess Tamoxifen has a side effect of possibly causing blod clots and Dr. Massey (being the uber careful surgeon she is) wants to make sure that this drug doesn't cause any issues with surgery, or healing afterwards.

  • plainjane64
    plainjane64 Member Posts: 521
    edited July 2009

    Ooooooooooooooooooh ....ok.Now that makes sense!  Clotting stuff.  Ok, sorry to be all about me.....I'm waaay too informed in regards to the clotting SE of Tamoxifen...ACTUALLY when diagnosed w/ ADH and after my first partial mastectomy I refused Tamoxifen because my one sister w/ BC had a history of DVT, my Dad had pulmonary emboli and Mom's side was laden w/ strokes......Following lumpectomy last Nov I was tested for Factor 5 Leiden and clotting studies...I  truly wasn't comfortable taking the drug until I knew.  It came back negative, and I've never had any personal clotting issues BUT that was a huge concern for me..even tho EveRYTHING says benefits outweigh risks and apparently the clotting issues are a bigger concern for postmenopausals.....and I'm starting to think I'm getting closer.......no regularity since I started taking the drug and before like clockwork......sorry- TMI !........

    Spring, Thanks!  I have believed I will feel liberated as well. Just needed the right reconstructioneer  And YES even tho it might have been nice to do all this last oct/nov......I so was NOT ready and I am So very grateful I've had the time to get here.  I know I'l be happy w/ my  results. Early detection and screening is great but ya know doesnt change the fact that  we all have to go to the measures of surgery/rads/chemo, anti homone therapy etc, etc.  They need to figure this out!  Meanwhile, we all get  a few bonus improvements....from other people who 'get it.'

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

    NOLA office called and left message last night. DH deleted it and can't remember who left it!!! Anyway, I was told it was fine to keep taking Tamoxifen. Which now has me in a quandry!!! Should I keep taking it or stop?? LOL.

    Warrior, I will look for your thread. 

    Spring. 

  • anniese
    anniese Member Posts: 69
    edited July 2009

    Springtime - I would do whatever your surgeon is telling you to do.  Each surgeon has their own way of doing things and different reasons for it.  Maybe you could ask your oncologist (or whoever your Tamox prescriber is) what they think regarding risk factors?

    Liberating - I really like that word!

Categories

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