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NOLA in September?

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Comments

  • louis13
    louis13 Member Posts: 195
    edited August 2011

    So, just letting the newcomers know that everything you are being told about the doctors, nurses, hospital and the end result is true...when am back qt home and not fingertypin on iPad will write more - not saying this any walk in park cos it sure isn't, it is huge, and omg when I stood up for first time I thought my legs were sinking down to floor below - but all of these guys are seriously good and also gracious and caring

  • carol40
    carol40 Member Posts: 1
    edited August 2011

    I found a very helpful ebook at www.breastcancerbook.net

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

    ok ladies, I feel I could write a book on my recovery but it would be too depressing... I now have found out that I have a blood clot from the port... OMG... so now I need to give myself blood thinning injections, and hope that it doesn't encourage my already bleeding breast to bleed more and NEVER heal... I have officially hit a low point... cried on my way home from the doctor.

  • cider8
    cider8 Member Posts: 472
    edited August 2011

    Oh, Betsy, cry all you want to!  Let it out!  That is such a bummer you have a clot from the STUPID PORT!  You will start healing better soon.  I know there are other ladies that have had some tough times with recovery and they did get through it.  Many hugs to you!

  • louis13
    louis13 Member Posts: 195
    edited August 2011

    Ok, so this is different to what I just PMed you. I had a massive clot that somehow passed into drain which we could not get out had to break open drain... . Betsy this will pass and you will overcome but you have every right to feel seriously p-ssed and down. you have been so strong all thru, just not fair to have another thing . HUGE (((hugs)))

  • nowords
    nowords Member Posts: 70
    edited August 2011

    Betsy, I was on Tamoxifen almost 2 years when I had my surgery. Stopped 3 weeks prior and three weeks post surgery because of the clotting possibility. Dr. Massey had me take blood thinner shots for about ten days after surgery. I did not have any bleeding issues.

  • toomuch
    toomuch Member Posts: 254
    edited August 2011

    Betsy - Oh no! My fingers are crossed that your bleeding breast stays stable. Pile on the pads, just in case. I know that feeling when you just can't take one more thing. I hope that everything turns around soon. You so deserve a break!

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

    Betsy... for heaven's sakes. Can't a girl just catch a break? Seriously. I hope that the clot resolves quickly and without further complications. Hang in there.

    Amy - It has been a year already?! Wow! I can't believe it! I think you should give the "girls" a nice one year hug!

    Celtic - you are having your surgery on a good week! My bilateral hip flaps were two years ago August 22nd. Woohooo!

    Spring - Hi!

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

    has anyone had an open wound? my bleeding breast has about a 2 inch open incision... I could stick a finger in there if I wanted to... Its a bit disconcerting... and when this all started bleeding it was seeping out thru cracks, so its like the whole incision is opening up.

  • celtic_antique
    celtic_antique Member Posts: 351
    edited August 2011

    Betsy -- For Pete's sake!! Just when you think you hace one thing handled,another crops up!! If I didn't know better, I would think you were Irish like me and Murphy's Law has kicked in big time! If your wound is open, call the Center! They need to know this ... and (selfishly) maybe you'll have to be back when I am there! Blood thinners are no fun, you infection from the badly positioned port was even scary, and now open wounds! I'd be totally freaking out. I'm not gonna say keep your chin up because everything someone said that to me when I was as down as you sound, I wanted to do some violence! LOL! But, know that healing thoughts, caring and prayers are headed your way ... this, too shall pass, though when in the midst, it does seem interminable and intolerable! Get some help for the open wound if you can ...

  • celtic_antique
    celtic_antique Member Posts: 351
    edited August 2011

    louis13 -- You are doing great. Every post makes me surer and surer that I am heading in the right direction a week from now. I know it is major surgery to recover from, but to be made whole in such a caring atmosphere will be worth whatever I have to go thru!

    Josta 7 -- see YOU in NOLA!!!

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

    Celtic... Yes the Center is aware... the incision started opening last week and has been opening more and more... I send photos every other day and then we talk on the phone. They have been very attentive and have been cooresponding with all of my local doctors to determine the best care for me. To be honest, in many ways, having travelled to NOLA with such an intimately small group, they are easier to get on the phone and easier for my doctors to reach them than if I had gone to a big NYC group... I have gotten a lot of raised brows over travelling and my MO especially has been a bit rude about the traveling, and I am sure would love to blame my clot on travelling, but it had to do with the port, which was installed here locally...

  • celtic_antique
    celtic_antique Member Posts: 351
    edited August 2011

    Betsy -- Never meant to imply you weren't on top of things! You sure are. I don't think many people understand why we make the journey to NOLA ... those of us who are heading there and those of us who have been there have experienced medical care like no other anywhere. With you and hoping fervently that things will soon be looking brighter!

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

    Celtic.. I didn't mean to imply that you had implied otherwise... I am confusing myself... LOL

    Yes, it is hard to explain the Center to anyone... you have to see it to believe it, and was one reason I needed to have an in-person consult before agreeing to surgery there. But I truly believe that I am getting batter care from a hospital and doctors across the country than I would have gotten with a hospital and doctors in the nearby cities... You know how it is when you try to get your doctor on the phone, its impossible.

  • louis13
    louis13 Member Posts: 195
    edited August 2011

    Denouement are you around? I am still at hospital with my daughter stella..... Nothing heroic about me lol!! This is day 4 for me and I last nighti halved pain Meds( tolerating ok) and will go to homewood tomorrow . I think they think I could/ should have gone today, if not yesterday...but I found that yesterday (day3) was more overwhelming than day before-and so I asked to stay..I think these first weeks are a roller coaster emotionally and physically and also things can change and develop really fast. Yesterday I had swelling bruising blisters all come up and look really angry and then begin to resolve within 24 hours...I joke and refer to my latest developing Story

  • denouement
    denouement Member Posts: 190
    edited August 2011

    Hey Rosemary - I'm leaving for NOLA today, we get in tonight albeit around midnight, but I am around tomorrow and Monday before my surgery on Tuesday.  I will PM you with my contact info--would love to stop by the Homewood and see you!  If you need anything at all, let me know!

    Well everyone, I'm off for stage 2 in a couple of hours...it's been busy as we had back to back to back houseguests the last couple of weeks so I've been running around a lot and entertaining.  It was great for a while cause I was too busy to be nervous but now I'm finding myself not sleeping and having a "flippity floppity" feeling in my stomach.  I'm sure everything will be okay, more nervous about the hysterectomy and surgical menopause than the stage 2 part, but I'm forging ahead and will update you all with my status as soon as I can.  Will also report back on Dr. D's shoes!

    Betsy, you are in my thoughts...hoping you catch a break very soon...you definitely deserve it....

    NOLA bound...see some of you soon!  ~dana

  • toomuch
    toomuch Member Posts: 254
    edited August 2011

    Rosemary - I'm glad that you're continuing to get wonderful care at SCSH. I stayed 5 nights too and felt ready to leave when I finally did. I hope that you feel that way tomorrow.

    Betsy - thinking of you today.

    NOLA ladies with LE - I have a question. I had mild arm and truncal LE on my BC side prior to surgery. I seemed to be doing great in the hospital with daily MLD and wrapping...having it done for me was heaven. My arm still is good but with each passing day, my trunk LE is increasing. I had hip flaps and my normal draining path is gone. I have an uncomfortable feeling and swelling at the junction of my axilla and chest wall and more LE beneath my breast over my ribs. I usually wear a compression cami but that's not possible now. Any advice?

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

    Hi Amy!

    Hi Nordy!

    Betsy, holy cow. You poor dear. I think I would have cried too. I know it is horrible now, but I know one day you will again be fit as a fiddle and all this will be behind you. You are doing everything you can. There was a woman who had wound opening and then I think she also needed some debridement during stage 2. I am glad the port thing is over, and so sorry about the friggin clot!!! 

    I also am also on tamoxifen and my once wanted me to stop a week before and after surery, and I made it about a week and a half on each end so I was off a total of 3 weeks each time. 

    Some one asked about nipple sparing and the color of the nipple. My nipples I noted got a lighter color but I think this was before surgery because of being thrust into menopause from the chemo. Apparently, the estrogen is what makes your nipples have a darker color.

    Here are the surgeries coming up!

    Aug 16 - Denoument - Stage 2 NS+SS PBM w/DIEP with Dr. D plus LSH with Dr. Von Almen

    Aug 17 - jeskachi - Stage 1 Stacked DIEP (starting over on the left side only), NOLA.   

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

    too much, I had similar issues after surgery, trucal LE. I had to sort of suffer through it until my nipples healed up enough so that I could wear my Under Armour compression Ts. Now it's all good. It has taken me a few years to figure out how to deal with my LE. It is my least favorite side effect of all this BC crap!!! 

  • Trishia
    Trishia Member Posts: 361
    edited August 2011

    Betsy, that is horrible!  I know that Melinda had a problem with her incisions opening and that they eventually resolved.  You have had enough!! 

    LE SUCKS!! LE SUCKS!!  LE SUCKS!!!  Okay...I feel better now.  Underarmour compression tops in a size too small at night.  It helps my truncal LE.  Now if I could only figure out how to help the radiation damage and fibrosis.  BLEH. 

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

    Trisha, I feel your LE pain!!! ugh.

  • louis13
    louis13 Member Posts: 195
    edited August 2011

    Ok getting sprung this morning- but not losing any drains. Both my previous lumpectomy and node removal produced seromas later, I seem to keep on making/retaining fluid so was expecting this... Am thinking about renting a car for next days in order to see a bit and escape the heat...is that a bad idea???

  • louis13
    louis13 Member Posts: 195
    edited August 2011

    Since I would have to drive and daughter can't, not going to happen..

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

    I would take the streetcar (two blocks from hotel) uptown... you can get a seat, take pictures, wave at the Center as you pass it, and you can buy an all day pass for $3 so you can get off at the park or to eat and costs no more.. I suggest a ride uptown and eating at Camillia Grill.. located just after the streetcar turns right on Carollton, way uptown. And then to explore the quarter, take a cab to the river and take that newer streetcar toward the french market... then you can walk about and then sit, and take a cab back. We walked back to the hotel twice... bad idea. I was exhausted.

  • joasta7
    joasta7 Member Posts: 30
    edited August 2011

    Thanks Celtic_Antique!  I am a little nervous but very happy to finally become whole again.  Looking forward to being there and possibly meeting you.  

  • joasta7
    joasta7 Member Posts: 30
    edited August 2011

    Hi Maggie!  My name is Joanne.  This is so funny - my caregive is my sister whose nickname is also Maggie.  My surgery is scheduled for the 24th.  Will be nice to meet you!

  • joasta7
    joasta7 Member Posts: 30
    edited August 2011

    Hi JustLaura!  My doctor is Dr. Trahan and not sure who else.  I am very happy to be going there and this site (although I am not sure I am using it correctly since I have never done this) is very helpful.  Thanks for your encouragement!

  • lesliet
    lesliet Member Posts: 44
    edited August 2011

    How much pain are you in after stage 2? I had no pain in stage 1  with hip flaps. no one will be with me till I check out then off to the hope lodge after.

  • joasta7
    joasta7 Member Posts: 30
    edited August 2011

    Thank you TooMuch!  I am very grateful to be introduced to this site by Marcia Petersen.  Not really sure I am using it correctly but will keep trying. 

  • Soccermom4force
    Soccermom4force Member Posts: 311
    edited August 2011

    You're doing fine Joasta!

    :)))

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