Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...
Take our poll: How does Breast Cancer Awareness Month make you feel?

NOLA in September?

1…376377379381382…908

Comments

  • kathrynla
    kathrynla Member Posts: 406
    edited July 2011

    I am about 2 pages behind and only get intermittent internet service - so I'll have to play catch up at a later date - but I saw DJFroo and Betsy are on the other side. Congratulations! Welcome to this side of recovery!

    That said, I am fully of complications these days - it seems my iguinal lymph nodes by my seroma are infected and swollen. Can you believe it? I'm now on 2 types of antibiotics. Although none of that kept me from taking my kids to NYC yesterday and riding the Circleline to the Statue of Liberty and having pizza at John's on Bleeker...although today I feel like I might have overdone it.  Can't reap the benefits of the tummy tuck yet - but imagining it :)

  • toomuch
    toomuch Member Posts: 254
    edited July 2011

    Kathryn-I can't wait for your post saying that your fully recovered. Your complicated post op course stinks. Hopefully, the double antibiotics will blow that infection away. It's amazing that you're able to keep your spirits up and great that you went forward with your trip in NYC! Sending prayers your way.

  • BrandyB
    BrandyB Member Posts: 60
    edited July 2011

    I've been officially moved to July 26th!

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

    Brandy...I may still be here...come visit at your pre op...room 208

  • cider8
    cider8 Member Posts: 472
    edited July 2011

    Great news, Brandy!  

    Kathryn, that sucks!  But you are such a rock star going out with your girls.  Take care of yourself.  I overdid it on my last 'energy' day before Wed's infusion and I'm still feeling it days later.  We all do it.  Kids will be gone for 3 days so I can sleep peacfully through them. 

  • BrandyB
    BrandyB Member Posts: 60
    edited July 2011

    Thank you. I will Betsy. And cider 8(Paula, right) thank you. I am over the moon about my test results. I've been preparing for bad news for 3 months now and now that the weight has been lifted I feel invincible.



    Brandy

  • SandyinSoCal
    SandyinSoCal Member Posts: 559
    edited July 2011

    Hello ladies!  I spent a few minutes trying to catch up on everyone's progress....it's good to check in with you.  I was traveling for nine days and just couldn't get online much.  We flew from L.A. to Atlanta, drove to Asheville NC and then DC, finally taking a train to NY and then flying home.  We did a lot, saw a lot, and had lots of fun.  Thank you all for your input on the route to drive--it really helped.  I was amazed at how smooth and wide open the highways were all the way, which made the driving really easy.

    Eve and I did a PR event for Breastoration in NYC and it went very well.  We spoke to dozens of reporters and once I get the contact list, I'll be following up with them.  We were so upset to meet a women in her 30s whose mother died from breast cancer in her 20s.  She is being screened with ultrasound for ovarian cancer, but they aren't doing breast surveillance at all.  She didn't know her mom's BRCA status, so we encouraged her to find out, and to insist on mammos and MRIs. Talk about being in the dark!  Her doctors are not giving her the information she needs to better her chance of early detection or decide about prophylactic surgeries. It's so sad to see how uninformed other women are, and we were glad that she stopped to talk to us so that we could at least explain things to her and encourage her to be proactive with her health.   

    Just before I left on my trip, we did some doggie pink ribbon apparel and will get it online soon.  Eve wore a new tank top we have with "peace, love and a pink ribbon" across the front in rhinestones.  She looked really great in it, and we had a matching doggie tee.  Everything was well received and I think we'll get some very good press from it and from explaining our reasons for starting Breastoration.  

    Hoping for quick and uneventful recoveries/safe travels for all, and Kathryn, I did see that you are dealing with another issue.  I hope it resolves quickly!

    Sandy

  • louis13
    louis13 Member Posts: 195
    edited July 2011

    Sandy and Eve, am so cross that you were both in NYC and I missed opportunity of meeting you or supporting you in your efforts and work which am not clearabout but sounds very important. - I also started 2 charities, served on boards and panels for a decade, lobbying in Dc, fighting city hall lol and was in DC a number of times with many of the breast cancer lobbyists when I served on the scientific review panels for the USarmy and what cancer research they would fund. Will google but breastoration is name of your group? And you mission is to spread awareness amongst women about restoration options as well as treatment and surveillance? Thank you for your efforts!

  • lesliet
    lesliet Member Posts: 44
    edited July 2011

    Hi, everyone sounds like alot is going on around Nola thread just pulled drain two. Laura sounds like your doing great! Kathryn I don't understand You were doing so good when i saw you, is stage two harder than stage one? Please let me know I'm suppose to have stage 2 Sept. 1 go back to work  Sept 6.

    I didn't see anything from Dragonfly how is she? And congrats to all who have been blessed to find our gems in New Orleans and this thread. We are in the best hands

  • louis13
    louis13 Member Posts: 195
    edited July 2011

    Betsy and djfroo , where are you?? I hope just doing good!!!

    BrandyB you cracked me up with your imagery about this invincible breast cancer survivor in muumuus..

    I too am pages behind , big week of tests , making arrangements commitments firing' docs here in NYC fighting with partner as i inappropriately shared! And daughter has 4 (big) friends staying from Aus(a month!) and it is SO hot in our tiny top floor apt , we are all being slowly cooked ...Thank you all for all those responses re the mixup with my surgery dates..it has sorted, sort of, at least for time being , and am paying heed and not making any big moves. You know, it is complicated...Thinking back to my married days I would not have reacted on certain levels as you do with new(ish) relationship. Think if really new relationship then you don't expect that much... Think if not so new ,it becomes defining... Whatever. I do believe this is a time when we all deserve the best from our nearest and dearest but thank goodness there are boards like this to fill any holes if this is not always the case!

  • djfrro
    djfrro Member Posts: 55
    edited July 2011

    got settled into the Bienville last night after some problems with the internet, the room they had us in would not hook up and we need the internet so my husband can work while we are here.  Once it was determined that it was just that room, they got us moved to another and all is well.  I am missing the chef at the hospital though.  And I am really ready to go home.

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

    Rosemary... I am still at the hospital and will be here til mon or tues I think... My temp has been elevated so it makes me feel poorly... Incisions aren't too bad.

  • louis13
    louis13 Member Posts: 195
    edited July 2011

    ok, so when did this start happening? how elevated?? i saw in your post to brandy you saying how you still might be there and thought WTH is that all about and what are you not telling us...so you are a non- complainer Betsy! please take care of yourself and dont be a hero

  • toomuch
    toomuch Member Posts: 254
    edited July 2011

    Betsy - Sending you healing wishes. I hope that the fever breaks and that you're feeling up soon!

  • louis13
    louis13 Member Posts: 195
    edited July 2011

    as i am merrily booking and paying for flights etc...it occurs to me that i still have not got pre authorisation absolute clearance yet....while it is theoretically a done deal, am feeling little anxious about that too. anybody else approach it like this???? 

  • louis13
    louis13 Member Posts: 195
    edited July 2011

    and another quick and i hope silly question...when vicki quotes your out of pocket expenses for the surgery based on your insurance coverage( in my case, covered for 80%)....is she including the hospital as well???

  • toomuch
    toomuch Member Posts: 254
    edited July 2011

    Rosemary - the dollar amount that Vicky quotes you includes the doctors and hospital fees because they accept your insurance payment as payment in full for the hospitalization. It's my understanding that the aneasthesia group and other docs they may consult may bill you if they are not in network. As soon as you have final insurance authorization you will get a call from Pam who will go over all the costs. For me everything was in network except, ofcourse, Dr. Sullivan and Dellacroce.

    I booked my flights before I had final authorization. In most states insurance is required to cover mastectomy and reconstruction.

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

    Rosemary...my temp was at 99.6 and then went over 100, but it is gone now... They said that when the lungs hold fluid after anesthesia a fever can arise.



    I was always told I would be in the hospital for 4-5 days... And I did not have final authorization either when I booked... Matter of fact I don't recall ever hearing that... But hospital is free and dr dellacroce is covered for me except for out of network coinsurance which will be about $2500.



    So my breasts are quite bruised especially the non-cancer side...maybe because of the attempt to remove my port. And my hips are quite indented which they will fix later... Breasts look fairly symmetrical... So that's good.



    I just had my first shower and all clean linens...robe...etc.

  • djfrro
    djfrro Member Posts: 55
    edited July 2011

    Glad your feeling better Betsy.

  • louis13
    louis13 Member Posts: 195
    edited July 2011

    yes, good to hear you are feeling better Betsy, and i guess 4-5 days cos bilateral?  am only going to be in 3 nights so i didnt think that thru..thanks for the response and funny how basic things like shower and fresh linens makes us feel so much better and human again! are you pleased with breasts and results? am expecting there are going to be some different responses for those of us who are not getting new breasts after not having them for a while

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

    My breasts are very bruised so... But the shape and size are fine... I know that revisions in November will be great... My hips are quite indented and abnormal looking... But again I am fine... I know it's a process and they told me I can have a tummy tuck in November and lipo on whatever I want... I never expected to come out of a bilat mx/recon and look good... That is what stage 2 is for... And I think my right breast is so bruised because they were trying to remove my port with no success.

  • djfrro
    djfrro Member Posts: 55
    edited July 2011

    what was the problem with you port?  I still have mine, I have three more infusions of hercepton.  I think that I will have my breast surgeon take it out just so she can see the final results of Dr. Sullivan's handy work,(they were very negative about coming here)  I can tell already that this is going to be so much better than the tram I had 13 years ago.  I had pretty much decided that I would spend the remainder of my days somewhat deformed because of the BC, but I can already see what he can do and can't wait till phase 2.  Every Doctor that I talked to at home told me that a diep was out of the question because of my former tram, Dr. S. did not hesitate at all, he evan took some fat from the tram side, and said that in phase two he will get it all evened up. My husband and I spent the day walking around the french quarter, you have to love a place that sells bloody mary's on the corner. I may have over done it, pretty tired tonight, so just hanging in the motel while he finishes his book. I will probably do more sight seeing tomorrow if we feel like it, I am so missing my kids and granddaughter though and can't wait to get home.

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

    Betsy, glad to hear you are just achy and not in pain. I would say that's how we all feel, from the reports. Keep the OnQ pain balls for as long as you can. I was always in a hurry to get them out because they're like bowling balls, and then regretted it! Have you walked around yet - I see you had a shower...that's when I started feeling human again... You are so lucky to be able to have just the hips. I was so hoping for that but I had to have stacked. The backside is a much easier recovery than the tummy. I would know, since I had both!!! 

    This port business?? How odd? What the heck? Hmmmm. I hope this is not going to be an issue for you. ((I have to say I hated my port so much it was one of the best things about the mastectomy, getting that sucker out!))

    Brandy, My Mom was a big wearer of "Dusters". lol!! I honestly thought she made up that name! ha!

    DJ, glad you are so well. Amazing!!! 

    Betsy, I had room 208 one time, nice big room right?? :) 

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

    I think all rooms are the same...I have seen 5 with visiting people.



    The port... Apparently it usually just pops out and mine did not... So they did a fluro scope? A picture... And said the end goes into my heart... So they did not feel qualified to deal with that... So I will need another surgery back in nj in mid-august...

  • rogam
    rogam Member Posts: 123
    edited July 2011

    Bdavis and DJFroo glad you ladies are doing so well!

    Hello board members/friends. Since I have gone back to work full-time 50 hour per week not as much time to post. I am doing extremely well. I have totally forgotten what drains feel like and there are time where I am like did i have a 9 hour surgery 2 months ago. I have been on 2 trips( New Orleans for Family reunion and Brookhaven MS). Heading up to Pigeon Forge  Wednesday. Hoping to get 2-3 more in before surgery sometime at the end of the year. 

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

    Betsy - The news about  your port is a little unnerving! I am sorry that you will still be dealing with this - but glad that all else is well! Keep up  your fluid intake - that will help with the temps. And yes, they will fix your hips at stage 2 - you will be so great like you are now.

    Rosemary - for me, the hospital cost was separate from the amount that Vickie quotes you. If you have not met your deductible for the year, you may have to pay that to the hospital. One surgery I had met it and did not owe anything to the hospital, the next surgery, I had not and had to pay $500. But actually, I think they ended up reimbursing me, because I really had met it, but when they were putting everyting through my EOB's did not reflect the medical bills I had already paid. Just talk to Pam and Vickie about it - you may not owe anything to the hospital. 

    Rogam - I am so glad that you are feeling well!

    Sandy - You and Eve probably had so much fun! I only missed you by 3 weeks! If I hadn't been going to a wedding while I was there, I would have tried to plan things differently! So glad that you are getting the word out and helping people. You two rock. 

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

    PS - JaimieH - are you out there anywhere? I sent you a PM!!!

  • ref
    ref Member Posts: 121
    edited July 2011

    Hi everybody - well it's been one week since I took out my drain and started on super-compression. I was worried because I was still producing quite a bit (well over 50ml a day) but everything has been fine. So, thank you all for your suggestions. I used them all! And I am really enjoying being drain-free!

    My remaining problem is hard areas in my left breast. I'm hoping this is not a big problem but, either way, it will be addressed at stage 2.

    Betsy - glad to hear you are on the other side and doing well!

    Kathryn - how are you?

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

    Hi Rhonda...I am glad that you have not had problems post drains...I don't find them to be a problem altho it has only been 4 days... I think I will lose the breast drains on Thursday and will have the hip drains for a few more weeks... Are your hips quite indented? Mine are, but it will all be cleaned up in November.... No pain to speak of, but my head feels light and i am a bit nauseous... So I will be in the hospital til tomorrow... I told the doc I want to be fever free for 24 hours before release... Seems reasonable to me... And the hospital is much nicer than the hope lodge, so...

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

    Advice on the nipples please....? I know the swelling and shrinkage has set in. So they seem pretty small to me still. I have no idea what normal looks like if they're too small or what? Stacy said the tattoos really will improve how they look. I'm still healing up so I can't swim or anything yet. However I do go down to the pool and wade then sit out while the kids swim. I have a halter type top piece and it squished the nipples and I even made sure to tie it loose :( Is it always going to be like this? I'm scared to death to wear a bra and make them even more flat.

Categories

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