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NOLA in September?

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Comments

  • cider8
    cider8 Member Posts: 472
    edited July 2011

    That's great news, Betsy.  

    Dana, thank you so much for sharing the info!  I think it's pretty fun you shared how much we are interested here and how Laura enjoyed knowing that.  I'm glad to know about that future bypass stuff, too.  I still need to get on the horn and request my op report. 

  • BettyeE
    BettyeE Member Posts: 136
    edited July 2011

    Yes the fat was grafted in that area. I had delayed reconstruction and on the mast side my ribs stuck out. I just had very little skin covering my ribs. It was very painful. After my reconstruction it is so much better. I think we need to revisit these thighs and harvest more fat! I just don't think I am up to it just yet. I may do tattoos in Oct. I am still so happy with my reconstruction. It cost me a lot more than anybody I have read about, but it was worth every penny. I would do it again in a minute.

    Nordy, thanks for you comments. I'm so happy to be posting. I am doing great right now. I know I can't beat this beast, but I plan to wear it out. I have a lot of living I want to do.

    Bettye

  • Springtime
    Springtime Member Posts: 3,372
    edited July 2011

    Betsy, I have to agree, it was not a lot of "pain" more discomfort and immobility. You will not be doing sports and gardening for a bit, but you will be up and walking, they want that and encourage that! I believe you don't ge the dreaded "DOM" after phase 1 any more, so you will be lot more comfortable than those of us who went earlier!!

    I initially had one step implants with aloderm as "placeholders" to get me through the dratted RADs, and I can tell you, the implants hurt me a lot more than the stacked DIEP/GAP I had muscle spasms and all! 

     DJ, good luck tomorrow!!! We're thinking of you!!! 

    BettyeE, YOU GO GIRL!!! Wear the beast out!! I love your spirit! thank you for being part of our board here. Live live live it up!!! :) 

  • bdavis
    bdavis Member Posts: 3,192
    edited July 2011

    Thanks Beverly...

    Good Luck Debby (DJFroo)... I am thinking of you... 

  • JustLaura
    JustLaura Member Posts: 213
    edited July 2011

    Denouement - THANK YOU for that awesome explanation!  That helps so much!  We are our best (and often only) health advocates during this journey and we really do need to understand what is happening to our bodies. Thanks again!

     Betsy - You go girl! You should be in pre-op in a day or so and ready to go for the 21st. I hope that now that your rads questions is answered that you are able to concentrate on surgery and not be constantly thinking about that. What a relief! They are wonderful at the clinic and will help you for sure. They will give you lunch but ours were sandwiches that were probably fresh several hours before we got them. We ended up going to the Voodoo BBQ which is just out the door to the left a few blocks. It was nice to get out and walk during that long day too Good luck!

    DJFroo - Sending great thoughts and prayers your way today. I'm sure you will be updating us on the post-op side shortly!

    I am 5 weeks out from surgery today and what a HUGE difference. I can actually forget several times during a day that I just had surgery. It is a WONDERFUL feeling. I'm still having some troubles sleeping but I'm sure that will work itself out, some day I'll just be so tired I'll fall asleep any where!

    Today I have my appt with my oncologist to determine if I'm going to have to do chemo or not. My low oncotype score 'should' indicate no chemo but I know more is factored in than that. I hope not. I hope not. I hope not! 

  • Springtime
    Springtime Member Posts: 3,372
    edited July 2011

    DJFroo, thinking of you!!

    Betsy, have a safe flight!! Have fun getting covered in blue marker at your appt tomorrow with Doc D. We do need a shoe report if you can manage it! :) 

  • Dragonfly1976
    Dragonfly1976 Member Posts: 1,552
    edited July 2011

    Well ladies, I had my nipples done at stage 2B. They look like nipples, but I'm kind of surprised at how much they shrank up. I haven't had nipples for so long, maybe they're normal??? :)

  • althea
    althea Member Posts: 506
    edited July 2011

    Hi ladies, I'm here today because it's my SIX-year anniversary of my unilateral mx with immediate diep reconstruction.  I continue to this day to be grateful for this forum because this is where I learned about diep and the absolutely fabulous doctors in NOLA who know how to take the stress and anxiety down to the lowest possible level.  My experience with local doctors was the polar opposite. 

    I feel like it was a miracle that I didn't erupt in shingles from head to toe during the paperwork nightmare from hell that my local doctors put me through when I told them I wanted to go elsewhere for surgery.  They totally stressed me out, gave me a hard time, which resulted in me second-guessing my decision, even though I had done more than due diligence in doing my homework.  I can remember the words they said to me like it is happening all over again.  My local surgeon first appeared as if he'd never heard of diep, but within 30 seconds he had plenty of negative opinions about deip and the surgeons I'd chosen. 

    Then I had trouble getting scheduled for surgery because there were snags in the flow of paperwork.  All of this was scaring the living begeezus out of me, and by the time it was all over, I realized that I made the absolute best decision possible when I left town for surgery.  Surgery was what scared me more than anything, and it was a cakewalk compared to chemo and rads.  ...of course my frame of reference is my own mom, who had a radical mx in 1980.  Thank GOODNESS surgery has improved since then!  

    The only complaints I have about my reconstruction is the nipple tattoo faded to near nothing, but that doesn't really bother me much.  Next is the abnormal scar tissue (keloids) that still itch on occasion and look unsightly (but still in the process of fading).  I had an ileus as a complication after surgery -- a definite rough patch and I encourage everyone to SPEAK UP IF YOU'RE CONSTIPATED in the hospital.  Somehow that topic escaped everyone's notice until I was puking on day 5 and had already checked out of the hospital.  

    On what I consider the most important aspects of this reconstruction, I like that there's no foreign objects in my body.  I like not having a mx scar like my mom and her mom (my mom is still around btw -- a 31 year survivor at age 83).  I like having a boob that doesn't droop, even though it makes my 'good' side seem more droopy than it might otherwise.  Best of all, NO DO-OVERS.  I'm still happy with my recon six years later and I hope everyone else here has many good years in store also.  

    PS, thank you spring for keeping this thread going!  Last time I visited here was in December, and that was 100 pages ago!  Hope you're doing well and keeping that LE under control.

  • djfrro
    djfrro Member Posts: 55
    edited July 2011

    Had my surgery this morning,pain is managable. havent had a good look at it yet but Dr. S told my husband that it all went well and he is pleased with the results. Yesterday he told me that I am going to the ultimate befor and after example. everyone here is wonderful. sorry if none of this makes sense just pushed my pain pump

  • bdavis
    bdavis Member Posts: 3,192
    edited July 2011

    I am here..arrived this afternoon...all set for pre-op tomorrow... And yes, very happy to have my rads question answered before I got here.... One less thing to worry about!

  • JustLaura
    JustLaura Member Posts: 213
    edited July 2011

    Yeah djfrro!!!! Congrats!! I'm so glad to hear that surgery went great and that you are doing so well!

  • Springtime
    Springtime Member Posts: 3,372
    edited July 2011

    Althea, 

    THANK YOU for coming here 6 years out and giving your testimony! I can tell you that women are still getting "flack" locally about going to NOLA, but we seem to persevere! I can tell you are happy and have no regrets. I think tatoo fading is normal, I've known other to get their TATs redone, maybe it's time??

    AND DJFROO, comes on this board and reports she's had her surgery done like it's all nothing but a walk in the park!!! YOU GO GIRL! The ultimate before and after sounds good to me! Keep us posted, I am delighted to hear from you so soon.

    Betsy must be in NOLA now, getting ready to be covered in Blue Marker tomorrow!

    Hi Dragon! Yes, nips do seem to get smaller. The one I had done is sort of like a little hard bump. Once they do the TATs, they will make that part darker, and so it will become more prominent, at least, that's how I see mine. Hope this helps!

    Nice to hear from you Laura! 

  • lisa645
    lisa645 Member Posts: 41
    edited July 2011

    wow diffro! party on girl!!!  goodluck Bdavis, thinking of all of you :)

  • toomuch
    toomuch Member Posts: 254
    edited July 2011

    DJFROO-Amazing that you're online posting on the day of surgery! I hope that you have a quiet night with amazing pain control.

    Betsy-I hope that your preop visits put you totally at ease tomorrow and that you feel relieved that this is the decision you came to! Also hope that you're eating some good NOLA food tonight!

  • bdavis
    bdavis Member Posts: 3,192
    edited July 2011

    Laying low tonight....ate in with my friend... We will go out tomorrow for a good NOLA dinner... At the center tomorrow at 11am...

  • louis13
    louis13 Member Posts: 195
    edited July 2011

    having a little crises here re my carer/partner who was coming down for entire first week, and then my daughter taking over to bring me back in those last days..well, it seems he got his dates confused and the weekend after my surgery is parents weekend at his kids camp, so now telling me he has to leave day after surgery...now I am not blood- minded or unreasonale, i wave him off every thurs/fri for his commute to another city 4 hours away to have his boys until the following tuesday.... but somehow i just feel that this time, just this time, he should be there for me. i know i am NOT going to feel good about him making token appearance for the surgery day and then leaving...and in fact would feel resentful and this would be potentially disruptive to healing/recovery....i think that facing a mx this is exactly when your husband/partner/loved one needs to step up to the plate and be there. i know that we dont all have partners, and have spent many years myself without, but IF you have one, i think that during this kind of op of all times, they should be there for us.. it just feels that this op- mx and recon- is a defining moment and it feels fatal to me to be let down now, at this late stage, and told sorry, didnt realise it was camp weekend and can only be with you till day after....so have i got this all wrong?

  • bdavis
    bdavis Member Posts: 3,192
    edited July 2011

    Well... My husband could nottake off work for whole time I am here and he wanted to do the front end...come down with me...here for surgery and then leave.... I opted for him to be here next week after post op to fly me home since I have to have an escort... So no husband here for me this week... And my 80 year old mom wanted to come but I would worry about her... So I look at it as "life happens" and I will be fine... I have a friend here... She does need to work, like today... So I will be at pre op alone... But that is fine. Rosemary... Can someone else come down for the days he'll be missing?

  • toomuch
    toomuch Member Posts: 254
    edited July 2011

    Louis13 - Since you are already under a lot of stress with anticipated surgery less then 2 weeks away, this is a particularly difficult blow. You are right to be upset that he didn't throughly research the dates prior to committing to be there for you. If you have kids of your own who have gone to overnight camp, I'm sure that you can imagine their disappointment if you didn't come on parents day. Even though it stings now, you  may really be happy that's he's there on your first post op day. I hope that you can arrange for someone else to stay with you during the in between days. I'll still be in NOLA when you're post-op so if you don't have a caretaker, I can stop by and spend some time with you.

  • denouement
    denouement Member Posts: 190
    edited July 2011

    Hi Rosemary,

    So sorry to hear about this unfortunate turn of events.  I also had a similar issue with my stage 1
    where my husband was supposed to come with me but at the last minute he had some horrible work issues and needed to stay home - my stage 1 was booked only 3 weeks out so it was a bit of a scramble for everyone.  Even though I understood his dilemma there was a part of me that really felt like if there was one time to blow off work this was it, ya know?  It turned out to be
    okay because I my mother was able to come down with me, but to be honest she was probably the worst caregiver ever!  It seems kind of comical in retrospect, but she did several things to
    make my recovery less than perfect.  My husband is coming with me to my stage 2 and I've been having lots of conversations with him in advance about what I need and what things are going
    to be like.  He's agreeable and supportive now, but who knows in the moment?  He's dealing with a lot of work issues still so his focus can be split.  Trying to be understanding and over-communicative to help head of any issues in advance.  We'll see how it goes!  :-)

    Anyway, I'll be in NOLA while you are still there, we are coming in on Saturday 8/13 but our flight arrives super late.  But I'll be around Sunday and Monday and would love to stop by wherever you are with whatever you might need - even if it's just some company and a sympathetic ear. 

  • JustLaura
    JustLaura Member Posts: 213
    edited July 2011

     I found out no chemo! But I start Tamoxifen August 1st. I have already been reading one of the Tamoxifen threads here so I have an idea of what I'm in for. 

     I am scheduled for my Stage 2 for October 17th. I hope I can wait that long!  

    Betsy - are you covered in blue ink yet??

  • louis13
    louis13 Member Posts: 195
    edited July 2011

    no chemo is very very good news justlaura...congratulations!

    and thank you so much ladies for your input.. this has thrown me for a loop, as you can prob tell#%$^&*and you can also prob also tell there is a big back story here..and much that is still sorting thru in a new( ish) relationship. 

    betsy, i will be flying my daughter down earlier for the end part now..she is not that happy about it cos cutting short some of her summer fun..but yes, I do have someone to be with me and bring me home

    denouement and toomuch( what are your names??) i would love to meet both of you, am very much looking forward to it..i am at the hospital until the 12th and then at homewood until the 17th. and all very wise words ladies, did calm me down....eventually lol rosemary 

  • Springtime
    Springtime Member Posts: 3,372
    edited July 2011

    Laura, I added your stage 2 date. Congratulations on no chemo!!! You are very lucky!! :)

    Good luck Betsy!

    Hope all is smooth DJFroo....

    Rosemary, sorry about the mix up. Grrrrrrr. Yes, I think it is not unreasonable to expect your partner/husband to be with you for MX and recon. I am sorry it did not work out. At least he will be there for the surgery. I've known several women to be without their husbands for the surgery and time prior. I think that is a very important time, as you will have him there when you're nervous, and you'll see him when you wake up. Those first few days after surgery are a real blurr. I hope you don't miss him too much, and aren't too mad!!! :) 

  • bdavis
    bdavis Member Posts: 3,192
    edited July 2011

    Hi ladies...I actually am NOT covered in ink...dr d ran super late with his surgery today and my 3pm became 4pm and then they said he would be in surgery til 6 ish.... So since we had consulted in may he said we could ink up in the morning.



    I met up with djfroo (Debby) and she was out walking...looked good.



    Rosemary... I think you were on the phone today with Katie asking about hotels while I was sitting in the lobby... Based on your dates and homewood suites selection and my side of the conversation, I am guessing she was talking with you...right?



    I am settled in at the hope lodge for the night and reasonably relaxed.

  • nowords
    nowords Member Posts: 70
    edited July 2011

    Will be thinking about you bdavis....I was calmest in the last few days prior to surgery.  You are in the best hands...

  • Nordy
    Nordy Member Posts: 1,106
    edited July 2011

    Betsy - You will be GREAT! If you get Deidre for pre-op, please give her a HUGE hug for me!

     Laura - Hurray for no chemo!!!

    Rosemary - I think this is such a stressful time for you. I am sorry that this turn of events is making things more stressful, but it is good that he will be there for at least part of all of this. The nurses will take great care of you while you are in the hospital - there are no worries there. Hang in there with everything.

    DJFroo- I hope you are still feeling well and up and moving about!

    Okay, ladies... I need some prayers and positive vibes for my niece. She is 31 and has been having some breast pain/fullness and has a palpable lump near her axilla. She had an MD appt. today and is scheduled for an US and mammo next Wed. Her mom (my sister) was blowing her off about things because my niece is kind of a hypochondriac, but I told my sister, with our family history, we shouldn't be blowing any kind of breast/uterine/ovarian thing off. I am hoping it is just...???  An infection with some enlarged nodes? Anything else besides a BC diagnosis... 

  • djfrro
    djfrro Member Posts: 55
    edited July 2011

    I am doing great, got out of bed yesterday and did a few laps around the floor, did away with the pain pump, taking meds orally.  everyone here is reall nice and try not to wake you up in the middle of the night to check vitals and what not. I should be leaving tomorrow to go to the motel for a few days, I am ready to go home though.

  • dsnydawn
    dsnydawn Member Posts: 102
    edited July 2011

    Laura - Great News!!!!!!!!!!!!!!

     Betsy -  Same thing happened with me...got inked right b4 surgery, was nervous about that but all turned out great!!  Thinking about you...finished my 3rd A/C yesterday..5 more to go..

  • celtic_antique
    celtic_antique Member Posts: 351
    edited July 2011

    Hello ladies. I am new here though I have been regularly reading your advice and counsel. I have found it uplifting when I am down and informative at all times. Long story short, had right MX for DCIS in March with tissue expander in place because NYC surgeon could not get me on his calendar in time for an immediate recon. 4 mos later, after consult and surgery is scheduled, airline tickets purchased, he bailed. I am working with the Center in NOLA. Have sent records, etc. For those of you who have been there, how long did it take until you had your consult and then surgery. It seems like forever (only 3 weeks) and I hate to be a pain and nag because I know they are SO busy!! Just wanted an idea of timing ... never wanted this TE in my chest and want it out so badly! Thx ... for your postings and for any replies!

  • louis13
    louis13 Member Posts: 195
    edited July 2011

     djfroo....you are making it sound too easy!!!??  

    betsy, did you hear a lot of laughing?? if so, yes, that was our phone conversation. for some reason i made katy laugh a lot....and i am so thinking of you today!!!!!!!!!!!!!! cant believe it is happening as i write.,

     and yes, only have booked homewood so far, because everything else still up for grabs and still working out flights and what to do with latest changes...and the stress and arguing goes on cos after becoming reasonable and saying how he could leave early fri now back to wanting to go back earlier again so as not to be stressed and relaxed about getting to camp ....'my kids trump you' they are sacrosanct.. which of course, is the truth for all of us, but am getting very tired of having it shoved down my throat 24/7 and kind of insulting to have a partner/carer who is chomping at the bit to get out of town/nola fast because camp is so important to him... very very close to breaking it off here, would that be a first on this board? breaking up just before mx and recon...?? not great timing i guess...and just after great family holiday together. the irony of all this is that the boys would absolutely have no issue with him being few hours late for what is a 3 day weekend, or for that matter their mum going instead !!   he doesnt even want to tell them about this mixup with the weekends, would not want to put them in that position. so i dunnnnnnnoooo...only having my daughter is feeling a whole lot less difficult...at same time, we both know and feel strongly that if we dont go thru this together, then we are over.   sorry for the inappropriate venting!!!!!!!!!! who would have thought mx and recon could bring up all these issues...actually, not even about that, it is just taking the time to be there for someone, and doing so graciously...

  • BrandyB
    BrandyB Member Posts: 60
    edited July 2011

    They may be moving my date to July26th bc they are trying to work in a lady that was just diagnosed.  Very excited!!!

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