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NOLA in September?

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  • DianneNC
    DianneNC Member Posts: 113
    edited August 2012

    I thought I would check in, since I have been totally MIA on these boards for a while now. I had bilateral gap flaps with Dr. D on August 1. After losing my DIEP flaps for reasons no doctor could explain, it was a total leap of faith to go to NOLA against the advice of virtually everyone I spoke with. I am thrilled to say, Dr. D and the entire team in NOLA are miracle workers!!! My surgery was a success, but it has not been without complications. I had trouble with my blood pressure being too low after sugery, so they gave me 2 units of blood and kept me an extra day. Even with these minor hiccups, I already look better than I could have hoped and I feel better than I expected.



    I am 4 weeks from surgery today, and my hip incisions look great. The gaps left in the hip area is often called a "shark bite" well, that was one big shark that took a bite out of my behind!!! I am not a petite gal like so many of you, and I told Dr. D to take as much of my ample ass as he possibly could. The man does as he is told! I look quite goofy from behind, but I know that will all be fixed up at stage 2. I am about a size 14, and carry most of my weight in my hips and thighs. I gave him plenty to work with!



    My breasts look great, but that is where the minor complications come in. The left side looks wonderful!! There is one hard area on the outer edge, but it is amazing how natural this breast looks. The right side is the trouble maker. I have an eshcar (is that how you spell it?) on the outer part of my incision. It is about 4 inches long and 2 inches wide, and is ugly, black and scary looking. It is not an open wound, and I am told it is healing great. I send pictures to Jeanine every couple days, paint it with beta dine a couple times a day, and generally hope for the best. 80% of the right breast is rock hard, and this one is significantly larger than the left side. They tell me this will all be fixed up at stage 2, so I try not to stress out about it. My fear is that all this hardness is necrosis, and I don't know if it will need another flap to replace. If it needs a flap, where will it come from? I'm sticking with my "leap of faith" stance, and will just wait for Dr. D to work miracles later.



    My other little issue just came up Monday night. My right drain stopped working. It had been pulled out a bit, and wouldn't hold suction at all. I emailed Jeanine, but knowing they were dealing with the hurricane, I didn't expect to hear back from her. About 10:00 that night my compression garment was soaked for the second time that day from the faulty drain, so I made the executive decision to pull it. Of course, Jeanine emailed me back at 10:30, and said don't pull it, call me on the cell. Oops! Too late. So we spoke yesterday morning, and she told me to contact my local doctor to keep a close eye on it. Oddly, I see no signs of seroma at all yet. The drain sight closed up immediately, and it looks fine. Jeanine is worried that if the seroma starts to develop over the holiday weekend, I might have trouble getting to see someone to take care of it. So on her advice, I am going to see my local BS Friday to be on the safe side.

    So Lesleyanne, it looks like we can compare notes to see how our misbehaving drains are working out!



    As for pain, I really don't have any. I took exactly one pain pill after being released from the hospital...they just make me feel worse. I have some discomfort in my hips and behind, but it is totally manageable. Mostly, I am just tired. Even 4 weeks after surgery, I feel whipped and light headed most of the time. I guess recovering from surgery is a lot harder after chemo than it is before chemo! Combine chemo effects with the effects of low blood counts, and I have been just laying low for a while.



    So sorry for writing a novel, but I wanted to give an update after disappearing for so long! My stage 2 is scheduled for Oct.18 and I am ready! I know so many wait a while for stage 2, but for work reasons I need to get this show on the road.

  • DianneNC
    DianneNC Member Posts: 113
    edited August 2012

    One more thing-- Jeanine told me yesterday that as long as the hospital has power they are planning to do surgeries Sunday and Monday for their active cancer patients. So these awesome people are working their holiday weekend to not back up their schedule, and to not add to the stress levels of their active cancer patients.

    She said they hope to be at work Thursday, it it all depends on if they have electricity.

  • bdavis
    bdavis Member Posts: 3,192
    edited August 2012

    Well.. My friend who just brought her daughter to NOLA for college told me today that even thoughthey were expecting to be back in class tomorrow, that will not happen now until Tuesday. They have no electricity and the kids are living in the halls (can not go to their rooms even)... This storm is moving slower than expected, so it may linger.

    Dianne... I had a very firm breast and even went into stage II with it very firm. Dr D worked on it, but it still needs more and I am 9 month post stage II... I too am not sure where he'll get it from. He has already used my butt and abs. So I see him Oct 8 to discuss this. I will keep you posted. I will say that it is not nearly as bad as it was. It had been about 80% of the breast... some of it softened on its own, and some softened with stage II, but I still have about 20% or so still firm.

  • Lesleyanne67
    Lesleyanne67 Member Posts: 66
    edited August 2012

    Thanks Diane!!! We can compare notes. So far so good for me. Just hoping it all behaves because I know they have a lot on their plates in NOLA with the current case load, catching up, and hurricane mess.



    You are 2 weeks ahead of me and you already have stage 2 on the books, wow!!! I just want to get Stage 2 in this calendar year : ). I don't have my dates yet vut I did request options as I was worried they might get busy near the holidays.



    Lesley

  • Lesleyanne67
    Lesleyanne67 Member Posts: 66
    edited August 2012

    Adey thanks for sharing your thoughts you are all helping me feel better! Means a lot! I am originally from Chicago. Western burbs A's a kid and Lincoln Park for about 15 years. Moved West 6 yrs ago!

  • annalive
    annalive Member Posts: 286
    edited August 2012

    Dianne -- I am 6 weeks post-DIEP and have necrosis in the center of my abdominal wound, so I too have been painting with betadine and sending pictures to Dr. S' office at least weekly! Well, that eschar was still there and healing is not progressing very well -- wound is open but not deep enough to need packing. Dr. S started me on outpatient wound care at my local hospital, and my first appointment was yesterday. They debrided the wound (no more eschar!) and now I apply a mixture of Santyl and Gentamycin ointments, covered with gauze and tegaderm, changed daily. They are checking my insurance for coverage of hyperbaric treatment, which they may start soon.

    I had necrosis on my breast flap before I even left NOLA, so had a quick surgery (one week after the first) to remove it. Othewise, the breast would be a mess and getting this treatment too. I understand by the look of my abdominal wound how scary that would be on the breast. Yikes, I feel for you. I hope we both get more beautiful at stage 2. Kiss  I am still feeling wiped most of the time too, having trouble getting over all this. I just started to take walks, but not long ones. Definitely not back to normal. Maybe it's good my stage 2 is in December, to have more recovery time to feel better. I wish you well on yours in October, and want to hear how it turns out!

  • Springtime
    Springtime Member Posts: 3,372
    edited August 2012

    Adey and LesleyAnn, I posted your dates up above... 

    Cherrie YAY YAY YAY YAY so happy for your good news! PTL!
     
    Sorry for the surgeries cancelled. I had to crack up at the comment "Issac blows" hahahahaha. Not so funny though for those of you on the edge of your seat waiting for surgery, then to have it post-poned!!! Hang in there. Just a hiccup! It will happen!
     
    On vacation with family, will try to check in again tomorrow.  
     
    I am hoping NOLA comes through this one with no big issues.  
  • cider8
    cider8 Member Posts: 472
    edited August 2012

    My surgery is one week from today! This Isaac business is crazy. It has to be terribly frustrating to have surgery cancelled. I'm not surprised the good doctors will be scheduling active patient surgery on Sunday and Monday. I hope things go well.



    I am certainly feeling antsy. I have been busy with the kiddos getting back to school, getting my house clean and making arrangements for when I'm gone. I am so antsy to know what Dr S is going to do with me. I could not be in better hands.

  • chellehump
    chellehump Member Posts: 374
    edited August 2012

    Cherrie I am so happy for you!!! YAY!!!

    Cider, I am right there with ya.  I am antsy and wanting to get things taken care of, but some of my plans have been flushed on this end not to mention what is going on in NOLA could change plans too.  Still praying all is ok there!! The caretaker for my son & dogs is gone, so I have to scramble and try to figure things out.

    My breasts have lots of hardness to them and I am not sure what it is. Just looking at them, they look great (except for the dark areas and the scar from my skin "slothing" off. Still don't think that a word...lol But :) If it is necrotic tissue, can't it just stay there or does something need to be done? Can Dr. D tell just by feeling it or is it something he will have to see once he gets in there?

  • bdavis
    bdavis Member Posts: 3,192
    edited August 2012

    Chelle... Fat necrosis can just stay there, but you do run the risk that at some time, it will reabsorb. So if its significant (like mine) it could totally mess with symmetry at some point in the future. So I am dealing with it now.

    Ann... I ALSO had skin necrosis on my other breast that was resolved a month after my first surgery (only because it caused my incision to open).. they had assured me that it would have eventually healed otherwise. But it was great to get rid of it.

    As for Fat necrosis (not on the skin, but inside the breast) is not a real problem unless it hurts or is large. But for anyone who has a little necrosis, even if it hurts, and you have not had stage II yet, be patient. Either the doctor can address it or it can resolve on its own also.

  • chellehump
    chellehump Member Posts: 374
    edited August 2012

    Thanks Betsy, so can he tell by feeling them what the hardness is? If it's scar tissue, necrosis or part of the flap? I mentioned this to Jeanine back when I was just a few weeks out and she said it could also be part of the flap.

    I need to have a small reduction and lift at stage 2 and my left is breast is already bigger than my right, so that will be fixed anyway :)

    I want to address what I can at this surgery because I won't be able to anytime soon after this.

  • DianneNC
    DianneNC Member Posts: 113
    edited August 2012

    I guess since my incision isn't open, they are going to just let it ride. I admit to being anxious about the timing of the healing because we are scheduled to go on a cruise in 5 weeks. I just don't see this thing gone by then, and kind of wish I could go to a wound care place to make it all hurry up!



    Annalive-- bet you thought no one would be envious of you going for wound care! ;)



    I actually scheduled my stage 2 at the same time I scheduled stage 1. I have to be back at work 100% by Nov. 6th, so we kind of counted backwards from that date to get to my surgery dates. I was scheduled for Oct. 19, but they switched it to the 18th because Dr. D has a conference to attend that weekend.





    Cider...hope you stay on schedule for next week!! We all know the docs will do everything in their power to take care of us, now if only mother nature would step aside!!

  • bdavis
    bdavis Member Posts: 3,192
    edited August 2012

    chelle.. I assume he can tell by touch, but swelling can make it more difficult I would think. That may be a great question for him.

  • KerryA
    KerryA Member Posts: 184
    edited August 2012

    LAStar, Chelle, and Adey- Thank you for your thoughts and tips (books & movies). It is reassuring to hear your words. What I found on this board is the comfort to talk and chat about hom each other are feeling, which can be really validating on the tough days. I was just telling a co-worker that "letting go" has become my new phrase for 2012 :) 

  • KSue
    KSue Member Posts: 87
    edited August 2012

    Cherrie, so glad to hear your good news!



    I noticed that DianneNC said that Dr. D moved her up a day because he is going to be at a conference. I wonder if he is going to the FORCE conference this year? The last few years Dr. Sullivan has been there.



    My hips are still sore but I don't think I am retaining fluid. It does hurt if I try to run though. I haven't noticed any type of waterbed effect. Are there any other signs?



    KerryA I was very nervous prior to surgery. It is definitely normal. The next month will go by quickly!

  • bdavis
    bdavis Member Posts: 3,192
    edited August 2012

    Looks like Drs Stolier and Trahan will be at the Force Conference...

  • chellehump
    chellehump Member Posts: 374
    edited August 2012

    I believe I heard when I was in NOLA for my surgery that Dr. Dellacroce was also attending the conference this year.

    @ Kerry, you are very welcome.  You can call me or e-mail anytime and I will help you in anyway I can. I don't think we will cross paths in NOLA, but I wish you all the best and just know you are in the best hands possible.

    Betsy, I will have to ask Dr. D that.

    KSue, it's so good to hear from. I saw the pic of you and your hubby and you look amazing. My hips/butt area are pretty sore. The fluid I have looks like it mainly at the end (bottom) of my incision not at the hip area. But, even today the top of my butt area (right below my waist) is very sore like I bruised it or something, but I didn't. I'm not doing anything though and will just wait to see Dr. D in 3 weeks. I am a little concerned now with the hardness in my breasts and what it is. I don't want to shrink over time, but hoping it's just scar tissue or something he can just break up during surgery. We will see.

    Has anyone heard anything from the center? My friends are ok (no power of course), but I know there is widespread damage. Hoping everything there is ok.

  • bdavis
    bdavis Member Posts: 3,192
    edited August 2012

    I heard from one of the nurses that they had a lot of wind but rain was not so bad... and another who was having an Isaac party... I think they are ok.

  • chellehump
    chellehump Member Posts: 374
    edited August 2012

    Well that's great news!! I guess it will just depend on whether they have power or not and if not, when it gets restored. My work asked me if my surgery will be rescheduled, but for now I told them no.

  • Springtime
    Springtime Member Posts: 3,372
    edited August 2012

    When I first got home from stage 2, I was afraid something was amiss. One side was more grayish white looking rather than pink and I feared the worst. I called and Jeanine called me back. She explained that necrosis is hard as a rock. However, everything was fine. 

    Then, some time after that, I did notice a small maybe walnut-sized lump on the inside of my breast where it thins out in to the sternum. It did not hurt and you could not see it, but you could feel it. I had ultrasound and was told this was a spot of necrosis. It did feel very different, solid and harder, than the surrounding tissue.

    When I went back for a 2B surgery and pointed it out to Dr. D., he said no way would he remove it, I assume because there would be an indentation there. So instead, he shot some of that high powered lipo water at it, and it reduced a little. The next ultrasound I had at home showed it had decreased (well duh, I told them what Dr. D. did...) anyway, I was released from further ultrasounds. I can still feel it there now, but I no longer worry about it.

    I've heard of some women here feeling certain they had necrosis (hard spots) and were later told it was not. So I don't know what to think... I guess you have to go and get checked out. They can tell with an ultrasound. When I had mine they could tell immediately it was not cancer (which is what had me concerned, of course) - they kept saying it'was "bright" or something like that. Apparently, cancer must not be "bright"!!

    So I guess if you really wanted to know, you could get an ultrasound?

    Glad to hear things in NOLA are okay given Issac.... it looks like a lot of water, though, on TV!! 

  • DianneNC
    DianneNC Member Posts: 113
    edited August 2012

    Lesley....early drain removal update. I did go in today for an aspiration. I didn't see the waterbed effect at all, but that side was puffed out some on my behind. My husband said one side looked bigger than the other, but we just weren't sure. I decided to err on the side of caution with the upcoming holiday weekend, and he aspirated 120 cc's. We made a tentative appointment to go back in Tuesday for him to take another look.

    I'm not taking ANY chances this time around!

  • Lesleyanne67
    Lesleyanne67 Member Posts: 66
    edited August 2012

    Dianne did it hurt? Well the "good" news for me is my honey is a nurse. He has worked in plastics, and oncology this can be a blessing and a curse. So far I think I have no need for aspiration. I have an appt Tues right after the holiday so if anything changes I just hope it holds out until tues AM. Compressing the heck out of the area.....

  • DianneNC
    DianneNC Member Posts: 113
    edited August 2012

    Didn't hurt one bit. However, I'm glad I saw the needle he used afterwards and not before. Holy smokes!!!!

    Lucky you having a private nurse. That must give some peace of mind.



    Have a great weekend!!

  • Rawlins
    Rawlins Member Posts: 3
    edited August 2012

    Who will be at Nola the week of September 10th?  My surgery (Mastectomy and Gap flap on right breast) is scheduled for the 12th.  I have wondered if there are many women out there who have had to cancel surgery due to Isaac.  What a difficult thing to have to do.  There is so much planning and anticipation that the idea of canceling is such a dreaded thing.

  • chellehump
    chellehump Member Posts: 374
    edited August 2012

    Thanks Spring. I also have a walnut sized lump on the inside of my left breast that has been there since week 2 maybe...Jeanine just said to make sure I mention it to Dr. D when I come back for stage 2. The other hardness is different, but hopefully it's just scar tissue that he can break up.  If it is something that needs attention (i.e. baby flap or something), I just hope he can address now, but I'm not going to worry about it right now.
    I haven't heard anything, so my plans are still firm to fly out on the 18th & surgery on the 20th.

    I have been keeping contact with my friend there and they were lucky with no damage and got their power back yesterday :) I have seen pictures of areas that are flooded which are only a few miles from her work. One pictures has 2 cows standing on the front porch. Not funny, but odd to see.

    Chelle

  • Nordy
    Nordy Member Posts: 1,106
    edited August 2012

    I just wanted to catch up reading really quickly and just say:

    Cherrie!!!! Hurray for the negative PET!!! I am SO happy for you!

    All you ladies with as$pirations - I can relate! I was super juicy and lost count how many times I was aspirated and then had two smaller drains put back in for two weeks and still had to have a couple more aspirations after that! It is another small hurdle, and a nuicance for sure, but it too will pass. And also, if they aspirated just above my scar line, I was totally numb... below my scar line, not so much! Hang in there!

  • cider8
    cider8 Member Posts: 472
    edited August 2012

    Rawlins, my post op is currently scheduled for Sept 11. I sent you a PM. Who are your doctors?

  • gb2012
    gb2012 Member Posts: 1
    edited August 2012

    Any girls that rode out the hurricane still at la quinta?

  • KerryA
    KerryA Member Posts: 184
    edited September 2012

    Ladies thanks again for all the encouraging words Smile  Its been a crazy week at work so I am really hoping things slow down on that end the last few weeks before my leave. Looking forward to enjoying a long holiday weekend with family and friends.

    My husband emailed the rental property we will be staying at, which is in Uptown. Owner said they did not lose power and all was safe and sound. I was a bit unsure about staying a rental property vs hotel but after talking with Katie at the Center, I feel good about our decision with having friends & family coming into town.

    Prayers and positive thoughts to all recovering, and thanks to all here for the encouragement!

  • patience62
    patience62 Member Posts: 7
    edited September 2012

    I will be in Nola the week of the 10th and have surgery on the 12th also.  I assume they will be doing mine in a janitors closet because mine was originally scheduled for the 30th and Isaac had his way with that plan.  It is nice of them to fit me in the schedule even if I have to recover in the hallway instead of a room.

    My husband is coming with me and I do not know if he will be comfortable on the extra bed that I hear is in the room.  He is 6'3 and 230 lbs.  A big guy who snores loudly.  Should I get a hotel for him?

    That has been another problem.  Where to stay while I am there.  Right now I have a room at Staybridge Suites and a room at Hampton Inn and Suites convention center.  Which should we go with?  Anybody with experience?

    I pray that this plan is going to go smoothly for all of us.

     Thanks,

    Kate

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