NOLA in September?
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Nodry! Ack! Mistaken identity! I'm sooo glad you're not vacuuming! ;-) But if you ARE, come on over to my place!!
Warrior--leave that dreadful machine alone! Nothing but trouble!
Edit to add: I got one of Sandy's reconstruction tee shirts last summer (black with hot pink rhinestones.) It was the hit of my cancer rehab/PT clinic, and at least one other woman ordered one!
Anne
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well ladies, I am back home. Two new stomach drains, drain in left breast, and port for my chemo. Breasts both look much better after he cleaned them up. Still having hardness in right breast, but Dr D said that it is due to radiated tisue and hopefully, will eventually absorb, and what doesnt - he can excise when I have Stage 2. Feeling pretty puffy on right side, and drains are leaking due to so much compression, but I can deal with all that if I know there is an end to it! Thanks ladies for being here. Will keep you informed of how it is going. See my Onc 11/5 to set up chemo - so.....one day at a time. Keep giving those good stories of successful stage 2 so I have something to look forward to!
Ginnie
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Ginnie!! Glad to hear from you! We are sorry this has been so challenging but I promise there is light at the end of the tunnel...Sandy-put your bikini pic back up for her!! lol
Anne- yes, that damn dreadful machinery!! I will not use it again for awhile! lol
I am going out with my girlfriends (15 of my closest friends) lol to celebrate another successful surgery on Friday nite....going to go buy a nice new vneck for my "twins" lol
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Ginnie, I loved stage II so much that I did it five times! LOL Stage II is the fun part, when everything is made more beautiful, if that is possible. Since I didn't start off in NOLA, I needed a LOT of fixing up.
Warrior, having that photo up for an entire day was tough enough!
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Iamc - Yes, probably everyone in the world will have all of their drains out before I do... LOL. Oh, well! Also, I had Dr. S and he did not have me paint the incisions with betadine, only the drain sites. So... I wonder if he has changed his protocol or if it is dependent on the patient for some reason?
Gin - glad to hear you are home and starting to feel a little better. Hang in there!!! I have a large hard area of fat necrosis on the left (non-radiated side - the radiated side is awesome with one teeny little area of fat necrosis). I really hope that my body absorbs it, because the left breast is a bit smaller than the right and if it has to be excised, I will really be lopsided!!! In reality, if it is not hurting anything, I really could not care less that it is there... It may just be me, but after not having boobs there for so long, one area of hardness just doesn't bug me that much! My PS here said just to wait and see - as many times the body is amazing about absorbing these things! Although, I have to wonder if my body is amazing about absorbing anything given the condition of my butt!!! LOL
I am going to order a T-shirt... I wonder if I can get it before next Tuesday and really show off the girls... LOL
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Sandy - Where is the NOLA t-shirt on that website? I cannot find it...
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Never mind - I'm a spaz... found it. Okay, Sandy - if you are around tonight or in the morning, what are my chances of getting that by Tuesday (I don't ask for much, do I?). I just want to wear it to group so badly, from what I understand, the doc that is doing the reconstruction thing was just so pompous last year and did not even tell the women about free flaps - until my friend brought it up, and then he talked bad about them. I kind of want to stick it to him... LOL... sorry, I have a little devil in me... So, I didn't order yet, just want to know the time-frame I am looking at... otherwise, I will still order, but won't be in such a rush!
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If I didn't have a party Tuesday, I'd drive over and go to that meeting with you! Give 'em hell!!!!
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Gin- wow new drains- I hope you are getting relief.
Nordy- I hope you are feeling better as well
Warrior- glad you spent time with family and No vacuuming
Moms Daughter- Can you PM me your picture- I am mad I missed it and I am contemplating stage two
I met with a wise female physician this week. She is the one that referred me to Dr Allen. It was a follow up apptmnt. I have never met with medical oncologist so I have that apptmnt in November. She said it is important for a med onc. to read my patholgy report from bltrl MX and review it to discuss next steps if I need any. (not what I wanted to hear) do you all have med oncologists?
Anyway, she looked at my results, was amazed, and did not understand why I would want second stage. (another procedure(lipo and fat grafting) that would put me at risk) She questioned if I was looking for perfection. I know I am not... She suggested I wait at least 6 mnths and then have a convo with Dr Allen about it. (again not what I wanted to hear) She suggest I move on with my normal life and try not think about it..... Also that Euphoria is very common after surgery and treatment is over ... but often there is a Mental Crash-maybe around holidays for me (not what I wanted to hear) I understand the euphoria- it seems we all have some??
After I let this advice/information process......... I think she is RIGHT about all of it.... I am going to not think about stage two and revisit it in spring....
It is hard to get back to daily life ... not sure why...
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Gin- Good to hear from you. Hope these new drains work great for you.
I missed Sandys Bikini Picture too!
Nordy- Hope you can get that Tshirt in time to wear for your Group.
Happy- that sounds like good advice- to wait & just not think about C for awhile. its not easy to do.
I could use some Euphoria after this surgery...I hope it gets me right through the holidays...As I dont really enjoy them since my sister died around xmas...and ist not the same w/o my Mom.
January in MN is usually crappy anyway...So I crash then every year- LOLMy Surgery is 2 weeks from today! Im a wreck.
Pam
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Ginnie, Glad you are back! I was thinking about you!
Pam, hang in there! You will feel better once you are down there and on the road to getting this DONE!!!
Kathy, I found Moneleone Hotel much more than last time, but Homewood was only 99, so I booked there for the 2 nights prior and 2 nights after surgery.
Trisha, did you call Monteleone and get the 79 rate again?? he he. A girl after my own heart!!!
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Ginnie so good to hear that you are home and resting. Wishing you a speedy recovery.
Nordy you so have to get that T shirt and razz that Dr. It makes me sick that women are not being told about their options primarily due to the inability of thse Drs to perform the procedure. Good luck at you meeting.
Yeh!! I have one less drain today. The center said I could pull the clear hip drain. The other is not putting out much (20cc) but it is still that nasty burgandy color.
Pam you will be fine. We will all be here for you to help you to the other side. Besides you are in the best hands with Dr S & Dr D
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PAm- You will do great! I think the anxiety will subside when you are there around those caring for you! I am sorry to hear about your Sister and Mom
Mack6- yay! that dark blood needs to get out.
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I am back from type A flu........ugh! Thank goodness for tamiflu. Seems to have worked pretty quickly. My lovely 2 year old nephew gave me the flu....they are so cute but so GERMY! Coughing is quite painful even at week 5! But I am moving around so so much better these days.
JenniferJane - I am SO SO GLAD your sis is visiting you. That is GARATE!
Ginnie - glad you are home, things will be better soon. We are all pulling for you!
Take care girls, I am off to take a little nap........
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I have put out an all points bulletin for Sandy to get onto this board! She's got t-shirt questions to answer and a picture to post!
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The betadine on ALL incisions is def a Dr. Sullivan requirement for all of his patients. His nurse had told me pre-op and when I was being discharged, the Center nurse told me jp drains only. I questioned her, because they were so adamant at Dr. S's office. "ALL INCISIONS. ONE SWAB PER AREA. EVERY JP SITE". The nurse called to clarify, and it's what Dr. S requires now. He feels quite strongly about it. His nurse said not only does it keep germs away, it also helps shrink the area.
Hope this helps!!
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Minnesota - PLEASE do get Sandy here!!!
Stephanie - thanks for giving me the drain that you lost today... LOL. The doc placed one in the left hip, so now I am even on both sides. Good grief! She thinks probably another 2 weeks and wants to get it where they are REALLY down - less than 15cc per day for 2-3 days. Oh my! Well, it is good times and maybe I can figure a way to work them into a Halloween costume!
I have as of yet been unable to get a hold of anyone at the center to talk about moving my stage 2 back to Dec. if anything is available. I don't know how we will swing it after the new year with the new crummy out of pocket that they have switched to! So... it either has to be in Dec.... or I have to save up for stage 2. I think at worst I had better get everything done in 2010 or they may totally take out of network benefits away in 2011!!!
Mel - I am glad that you are slowly feeling better! I just made an appt to take my girls for their flu vaccine tomorrow - I suppose I ought to go get mine too... just in case!
Jen - my older daughter is dressing up as Batman (LOL... I know she is a GIRL, but she likes to be like her cousins (boys)! She even got a Batman backpack for school!). My little one is going to be Little Red Riding Hood... or a witch... I don't think she has decided yet! Since we have 2 different Halloween events, I guess she could be both!
Pam - deep breaths... You will do great!!!
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Wow - there has been a lot going on! I'm sorry some of you have really been through a lot lately.
Stage 1 was quite a bit tougher than I anticipated. Surgery went so well they were going to let me out of the hospital a day early, but on day 2 after my shower, the right side started turning purple and the nurses couldn't hear the Doppler on the outflow. Dr. T was called in and then Dr. S was called in. When I lay down flat, it did improve a little, but Dr. S said, "It will probably improve, but probably isn't good enough for me." He thought maybe the vessel was being stretched across a rib, so back into surgery we went. The nurses at Southern Surgical were so great - they were all over it immediately when the color started changing and they didn't hesitate to call the docs even though it was Sunday night. I did get to meet Spring & Trishia at the postop - that was great! When I got home, the right side was very firm/hard all around except on the flap. It has gotten a lot better, now just some hardness across the top - hopefully that will resolve or be fixed the next time around.
I'm just about 6 weeks out - biggest difficulty now is range of motion - I can't even touch my toes - wait - I couldn't touch my toes before the surgery! :-) Just still some stiffness on the backside, but it gets better every day. Please put me down for stage II in NOLA with Dr. S on Nov. 30th!
Again - I'm sorry for the difficulties some of you gals are having - I hope you all improve quickly!
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Ginnie and Nordie, I have two areas of hardness on my breast as well. The breast was radiated and Dr. Allen said same thing as Dr. D, will take longer to absorb since radiated and what isn't absorbed will be excised in stage 2. I wonder if there is anyone out there that can tell us what their experience was with this and if body actually absorbed. I keep massaging (even when I am driving the car!) and sometimes it seems softer but then goes back to being hard. Gin, glad you are getting some relief with new drains.
Pam, It's normal to be nervous. Waiting is hard but hang in there.
Happy, I think you are doing the right thing waiting till spring. I too am having ups and downs emotionally. Mostly fears about recurrance keep me up at night. I hate living in fear, for me that is the hardest part of this whole ordeal. I miss the old me.
Spring, please put me down for phase 2 on December 14 with Dr. Allen.
Patty
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Danny!!! Your ears must have been ringing! I had lunch with anniese today, and I said I needed to email you to see how you were doing! We missed you at the lunch last month, but certainly understand! Keep healing.
My Stage 2 is in just over 3 weeks. I'll let you know how the hard areas of necrosis are managed. I've got a matched pair!! The areas have improved a lot over the past 5 months, but not enough to suit me. That's what stage 2 is for. I'm not sure they'd totally resolve on their own.
Anne
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iamc - I am looking at my d/c instructions: "Paint the exit points with Betadine swabs daily." Does yours say something different? I only know that there has been past controversy with the use of Betadine interfering w/healing - but this wouldn't matter concerning exit points where the need to prevent infection far outweighs anything to do with healing. I did continue to paint the exit points for about a week after the drains were pulled, just to be on the safe side - but I definitely did not paint the entire incision line. Anyway - things definitely could have changed between my surgery and yours! (I did, however use anti-bacterial soap when showering until the incisions were healed.) Best to keep bacteria out - so I don't doubt what you are saying!
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I had DIEP by Dr. DellaCroce and was told to swab all incisions with betadine swabs - a new one for each incision. They sent me home with a whole box of swabs.
For you ladies still undergoing various cancer treatments I would recommend the book "Uplift: Secrets from the Sisterhood of Breast Cancer Survivors" by Barbara Delinsky. It is a compilation of thoughts and advice from many women on all aspects of breast cancer treatment. Easy read - each chapter deals with a different aspect of treatment. Here is the Amazon link:
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NebrNan - I have that book! I haven't read through the whole thing yet and it has been a long time since I picked it up! My mom had given me another one which I passed on to my sister and for the life of me do not remember the name - which really doesn't help anyone here does it... LOL. I am going to have to do a search - it was a book about 10 or 15 women that SURVIVED breast cancer - not the doom and gloom that some of the books are! I will see if I can find the name!
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Nordy, I think there must have been a change recently on what Dr S wants as standard protocol. The hospital nurses were a bit confused and said they had heard both yes and no on the incisions. Since she wanted to settle it, she called over there. They told her Dr S DEF wanted every incision, a new swab per incision (like NebrNan said, but Dr D). I went home with two large boxes of swabs. Both at my pre-op AND post-op Dr S's nurse was really specific about it. I'm now three weeks out and hardly have any glue or scabbing, except one area. When I asked about the scabbing on that spot, Dr S said keep up the betadine, not only would it keep it clean but it would also help shrink the incision. I didnt know about the "shrinkage" part.
I'm sooo looking forward to Stage 2 so I can get evened up
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I have that book as well! It's a good one!
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I'm here, I'm here! So sorry for not being around all day. One of my favorite bridal designers is doing a huge fundraiser fashion show for breast cancer research in Beverly Hills tomorrow night and asked us to donate 150 favors. We had to make them this morning, and then I left to deliver them. Horrible traffic on the 405 fwy, also known as "the parking lot". Then I arrived at home to find my dear brother here. He's getting married on 11/08/09 and this may be the last time I see him single. The bride is apparently having a case of nerves and he hasn't heard back from her all week, so he is really scared that she's going to bail!
As you can see, due to popular request, I've made my avatar the bikini photo again. It's just temporary, so hopefully everyone catches it this time.
Nordy, we can get a shirt to you by Tuesday. You need to order tonight or tomorrow morning. We have to ship tomorrow to get it to you on Tuesday via UPS ground. You're on the West Coast, right?
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Oh, and we did some really fun stuff for post-reconstruction today! Just wait until you see.... A big crystal stamp of approval in red stones, and a USDA Grade A seal in black diamond crystals, only it's "USDB" (dept of breasts). We'll have those online tomorrow night!
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Thanks! I'm getting there. My hysterectomy last year caused quite a detour, but I think I'm back on track now. I've really had to take the exercise up a notch though. We used to walk two miles each morning and now we're doing three. I've cut out the diet Coke, stopped eating meat, and am being very careful. I've been drinking fresh wheatgrass juice when I can find the time to go to a juice store (thanks to our Sept. EnCourage meeting). The photo seems deceiving to me because I have a long way to go, but at least the scale is finally going in the right direction again.
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Wow, wow, WOW!!!! Miss a day or two and just miss too much. I have been ROTFL....mostly after Sandy's comment about stage 2 five times!!!!! LOL!!! BTW Sandy you may be competing w/ Marcia in that bikini girl! I WILL be ordering the under constrction but I may have to wait 2 more business days as my disability dep got messed up. I spent the entire day on the phone dealing w/ the Hartford, workplace and THEN finally got sorted out signed up for 2010 benefits. Nordy you may have it right.....We only had one choice for out of network....this insurance stuff is such a racket-yes, beats the alternative but I will NOT have someone else choosing my MD for me!!!! Sandy also hope all works out well w/ your bro BUT You, esp since you're in the wedding stuff...there is a book titled "Honeymoon w/ my Brother" written by Wizner or wisner?-hans or franz...his bro is Kurt...............OMG a true story...supposed to be a movie coming out GREAT, GREAT book....esp if you love travel...basically the poor guy got jilted at the altar. I e-mailed the authors, was reading it while my oldest sister was trying to die 3 yrs ago....they offered to come visit on their book tour....nice guys, they've been on Oprah. OK, sorry, not trying to be a buzzkill, a good read no matter what.
So my sister(the DCIS one) came over wednesday and we had the BEST day....she took me to LE therapy sat in w/ me saw the twins, was so impressed. MY LE therapist(BTW WARRIOR- YES LE=lymphedema) scolded me for not using enough compression. Then kinesiotaped me. OK then my sister Jean and I went to lunch, came home talked and talked about everything....I gave her a K Steligo copy and showed her our thread...she thought it was great and a RIOT!.....I certainly was NOT suggesting anything but she said flat out she may need it(the book) for herself. She said I did everything right. It was all good. She helped me put away my luggage from last month! and move some other stuff that was driving me nuts and said she'd come back. I kissed her goodbye later in the eve when a workfriend called me.
Ginnie, so glad to hear from you. Girl you've been on everyone's mind...keep us up on everything!
Warrior, we must hook up in dec. You are funny! Le therapy is not exactly PT, but many LE therapists are also PT's. Le is not taught much in med school because it's very specialized...Your Dr. Massey is UP on it......they know it does exist.
iamc, we have to hook up too...think we're all there w/in a few days of each other see specs above.
Happy, I was given a med onc to follow w/ and a bit annoyed at first because I felt a lot of what she was doing was duplication BUT she manages (for me) the hormone(anti-hormone) therapy. My local BS apparently I'll follow the longest w/. I spoke to both of them as I felt I had TOO MANY appts and they were great about streamlining. I'll see one every 6 mos for now then it lengthens out...of course if I have issues then I just call.
Nordy, you are juicilicious.....my focus is to get this fluid(in my skin) under control.......SEVEN weeks til stage 2 for me and the chicas above. I love the batman idea AND yes, you must work those drains into a costume!
Pam, take a deep breath.. We were all there and look at us all now! You are going to get to the other side and be as elated as we are.......let us know what you need ok?
Stephanie...I can't go back to see what I wanted to say to you...so I'll have to do so later.
Need to run for now....a NOTHER full day! Have to deal w/ an affidavit/subpoena.....grrr employee situation today after LE therapy and I AM having lunch w/ a fellow nurse friend fellow BC survivor who had LD flaps some years back....she's a nurse lawyer so i will be picking her brain re: this issue.
TGIF!!!!!!!!!!!!!
later girls! Melanie...glad the flu is better dear,
xoxo,
jenniferjane
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Danny, I will add you above! We will overlap again! I am so glad I will not be the only one there! I am Dec 2nd stage 2. I am going to call you for the low down after your surgery!
Sandy, I WANT THAT BIKINI BOTTOM!!! Dr. D is going to have to lower my abdominal incision line!
Glad to see all are well.
Pam, hang in there. You will be glad to have this BEHIND you.
Spring.
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