NOLA in September?
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There is NOTHING like having the "grenades" gone!! Celebrate!!Yougo, Adey!
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Wow! Stop checking for a day and it looks like a whole novel gets written!
Downey, I had to do a show with two hip drains still in and it was a problem finding something to wear on stage! I did finally settle on a top that had a jeweled band just under the breasts and flared from there to hip length with stretchy pants. I tucked the drains into the pants and it flattened them enough that it wasn't too noticible. Not ideal, but I passed! I definitely feel for you on the drains thing. Just a few more weeks and I'll have them again... oh joy!
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Hi Ladies,
Thank you to all of my Caitlin's Irish Brigade green panty wearers! Yesterday went great. Still no major side effects other than fatigue. :-)
@ Celtic Antique: CONGRATS on your clean scan...hoping that is me someday soon!
I did find out last Wedesday that the node is positive...I had a feeling about it and allowed myself to have a downer day, but I am confident that the Red Warrior will knock it out and kick it's butt to the curb!!!
DJ: I have been thinking about your Stage 2. I had the MAJOR itchies with another narcotic so in Stage 1; they had to switch me too. My family was ready to hold my arms down because I was itching holes in myself....not cool! Glad you are home safe. :-)
I scheduled my Stage 2 for November 14th-yay! Looking foward to having all this chemo and radiation behind me and on to a new me, inside and out! Healthy and Happy Caitlin!
I hope you are all doing well. I haven't posted in awhile because I have been on a computer vacation. Just checked my e-mail since two weeks ago. I am bad, but two weeks ago, I spent every day at St. Vincent Hospital in Green Bay...can't wait til the bills start rolling in, lol!
((((HUGS))))
Caitlin
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Hi Caitlin, So great to hear you're feeling all right. I am looking forward to the day when your cancer is well and truly kicked to theh curb!
I had an email the other day from the clinic coordinator for the Cancer Prevention Program at the Seattle Cancer Care Alliance. She had seen my blog post with the BRCA/Dr. Seuss parody and loved it. She suggested I youtube it. So I've done so. I'm a little worried about the copyright. I THINK I'm in the clear regarding fair use but that never stops lawyers from trying. I have no intention of taking anything away from Dr. Seuss' wonderful Green Eggs & Ham. Anyway, here's the link: http://evamoon.net/blog/2012/04/12/brca-genes-hamograms-the-video/
Enjoy!
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Nordy... Thanks for your passion for the other thread's author.. If you read her other posts, you will read that she had a lat flap and is in a lot of pain, and feels mislead by her doctor... I find it interesting that she is on a crusade against DIEP when clearly her surgery was not a cake walk.. she has had lots of surgeries etc... and on her profile page, she is a self proclaimed bully... speaking here mind and not looking back. So when you asked a page or back if you went overboard, no... it would be a shame if other women listened to her rant and trusted what she had to say.
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CaitlinB, You keep up the positive attitude. Just think that this fall you'll be back to your old self (young) self again and life will be bright!
Thanks for the drain info everyone....I think my husband expected me to excell and get them out early. GEEZE! I email the Doc photos tomorrow and drain output and we shall see.
I so value everyones support. Thanks
Adey...lucky you! I am drain jealous
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What the heck am I missing here with Nordy and the other author thread thing? I have to go back and read, I'm in the dark!
Downey, some women have called the center and they will send you a smaller compression garment (for free). you need to squish the heck out of yourself to get it to stop. I have heard this from many many women. I had a friend who was at 9 weeks and still juicing up a storm, she squished like mad with a smaller garment and it stopped!
I have to go back now and figure out what Nordy did/said/wrote!!!!!! LOLOL.
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Eva,
Thank you, dear! Loved, loved, LOVED your video --it was DE-LIGHTFUL!!!
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Adey: I am jealous - drain free. I am still juicing from right hip 3 weeks. Still can't figure where to put it!
I really hoped to loose some weight - but I have gained a few pounds.
Eva, I really enjoyed your Dr. Seuss poem. It was great.
Caitlin: you are in my prayers.
Thanks
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Spring, just look at Nordy's profile and you'll find her posts.
Nordy, you got to it before I did. As usual, you said exactly what I would have!!
Caitlin, I haven't worn green panties, but you've been in my thoughts. You are going to get healthy, happy, and strong. Feel it, girl!!!
Kathy, Miss Juicy Hips, I didn't lose weight so much as changed shape and size. Be patient if you can (do you have a choice??) and see what happens. The most dramatic change for me was after Stage 2.
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Caitlin -- I am hoping for Stage IIa in November so I hope we can be there at the same time! Would love to meet! Just haven't gotten it on the books as the B&B opens in 3 weeks (AARRRGGGHH!) and there are, of course, 9 million things left to do! Nothing like taking on a "small" project to deflect the worries and anxiety about BC and reconstruction.
Nordy, thank you from all of us ... and from those women who will read your postings and know that they are fact, not "one man's opinion" (and an unqualified one at that -- Dr. Rand!) and a bitter woman's explosion outwards of disappointment. Perhaps she is trying so hard to justify the course she took and is, per Betsy, so unhappy with. She should just bit the bullet and call the Center!! LOL! Would be an irony for sure. But most importantly, the word about autogenous reconstruction is s-l-o-w-l-y getting out there. And in the right manner ... gain, thanks ... and to all youse udder guys who also chimed in!!
Eva, Dr. Suess has always been my fav and your take on GE&H was terrific. Keep it goin'!
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Spring - just up to causing havoc and speaking out against the blatant disregard of FACTS pertaining to SGAP and hip flap procedures. That's all... You know me, I can't sit on my hands...
And thank you to everyone who stood with me! I appreciate it! Yes, I kept thinking, should I stop now? But kept adding more and more evidence to support what I was saying... LOL... I think I was an attorney in a former life...
Anne - I KNOW you would have if you had gotten there first!
toomuch - thank you for posting the little bit about not giving credit to the doc referred to - I kept meaning to write that! She took full credit for her advice until she took heat for it, THEN stated her source...
So after all of this, my fingers need a break.. LOLOLOL! Everyone have a GREAT weekend!
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I just went to that thread and read thru the whole thing. You guys are all great! Wow - what drama! And Nordy - what can I say? I bow down to you! So if someone will tell me how to post photos on bc.org, I guess I better do it (or do u mean the Timtam site?), so I can prove Nordy's point and show non-flat, symmetrical, one-sided-SGAP buttocks. I think she needs some more evidence to bolster her side, even tho she has rested her case - LOLOLOLOL!!!!
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Good news yesterday. My PS wrote an amazing letter referring me to NOLA and stated that he could not perform that type of surgery in my hometown hospital. I was so impressed. I am not quite sure how my HMO can contest his letter. There are no other hospitals within 50 miles bigger than the hospital my PS is associated with. My family and I are not trying to get too excited because we have to wait to hear back (since my original request was denied) but I feel that this has to be a major step in the right direction!
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Minnesota, YES, please post your pic , as I am scheduled in 6weeks for a uni SGAP and so curious as to what I might look like, knowing we are all different of course. If you dont want to post on Tim Tams site, would you be willing to email me? Many thanks.
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hi all...just checking in. I can't believe I forgot already how recovery is not a linear process. I'm 1 1/2 weeks out from Stage 2 and thought I was doing ok and then...bam...2 days in a row of feeling like crap and finally having a bit of a cry. I think my boyfriend thinks I'm nuts.
Nordy--hello!! What is a "bunny tail?" Am I just being dense?
Caitlin--I'm thinking good thoughts for you!
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Djweinstein,
I'll try a definition: A bunny tail is the puffy area above the tailbone created by hip flap surgery when the incisions do not extend all the way across the back. Soccermom is the person from whom I first heard this term - & I must say it fits! I think need2new calls it a "whale's nose". Anyway, mine seems to be going away a bit on its own, so I think a lot of it was swelling initially. I'm sure Dr. D. has a plan when I see him for stage 2.
I am sorry you had a couple of down days. Try to remember that you will feel better before you know it and will forget most of the difficult details of recovery, just like last time! That's my story and I am sticking to it because I am thinking of going sooner rather than later now for my stage 2. A part of me just wants to get it over with and start recovering for the long term, not recover some sensation and then have the nerves severed again. This wholly numb feeling most all of the way around my waist is weird. Peace, Tamara
p.s. Praying for you, Caitlin.
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I have that "bunny tail"... and am 5 months post stage II... does it go away?? Or does Dr D need to intervene?
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Over the weekend I have been reading a lot of the links posted here, old posts, and more. Hoping to get some insight on a couple questions:
1) Were many of you supplied with 1st aid items when you left the hospital? I read the "packing list" posted here (thank you!)
2) It is true some get the compression garment and others don't? For those that did how long did you have to wear it? Realize times may vary. I am planning a PBM with hip flaps.
3) Estimated time off work for Stage 1? I do office work and may be able to work from home but don't want to overdue it and be realistic and take the time needed.
4) Estimated time for drains?
Hoping to hear back from insurance this upcoming week after the great referral letter from my PS. Hard for me not to start the planning stage!
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Kerry..
1) Yes, they send you home with a lot of supplies and will even mail you more if you need them once home.
2) Everyone gets compression, and for hip flaps, you will get a girdle (2 of them) which you will wear until one week post drains.
3) You could probably do some work from home at 1.5 - 2 weeks post surgery.. kind of depends on pain meds. I was off pain meds after like 3 days and driving at 2 weeks post op... I certainly was on the computer and could have done that kind of work.
4) it varies.. I had my hip drains for 8.5 weeks... that is the outer limit... some might lose them at 6 weeks. Staying well compressed is key.
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Kerry - Just adding to Betsy's response which was very complete. I had a unilateral GAP and was lucky and had drains for only 4 weeks. Four weeks is probably the shortest time for hip drains.
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Betsy nailed it. Except do listen to your body about working. Everyone's different. 1.5 weeks is barely home from NOLA, since you're there for a week post-op. I was certainly at my desk doing some short stints of work by 2.5 weeks, but I was on pain meds for four weeks around the clock and was just too tired to do more than an hour or so of actual work at a time, even though I was on the computer messing around for that long even while still in the hospital.
I pulled my last drain at six weeks and one day. (Hip flap)
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Just wanted to say hi to all of you! I've been working non-stop and have been catching up on your posts while sitting here waiting for my brother's wife to give birth!!! Amazing how time flies...I had one of my many surgeries in NOLA on a Friday 2 1/2 years ago..... the next day, the car took me straight from the hospital to the airport. My brother's wedding was the next day...they went through a couple of miscarriages...a couple more surgeries with Dr. D for me.....and tonight baby Jade will be here!!! I'm almost five years out from my diagnosis, and I guess I'm in a reflective mood tonight, thinking about the circle of life. 0
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Sandy! Hurray!
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sandy - congrats and best wishes for your new niece!
Cascader - I'd be happy to supply some photos. I'll need help with the pictures from my husband and then need to figure out tim tam again. meanwhile, I could send u some photos I tried to finagle myself using various contortions with me, my camera, and the mirror! Pm me your e-mail. Try not to worry about your outcome. I was pretty concerned, and things do look a bit strange after d stage 1. But there was much improvement after stage 2!0 -
Good morning!
Spring- August 27, Stage 2B in NOLA with Dr M please, thanks!
All- To tummy tuck or not to tummy tuck, that is the question...... Also to nipple or just 3D tattoo is also the question! Opinions welcome and appreciated. (c:
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Adey, I hear you on the tummy tuck thing! My stage 2 is just a few weeks away and I still haven't decided. But I'm leaning towards yes. I don't want the extra scar. Between that and the hip flap scars I'll look like I was cut in half! But when else will I have such a chance to have a smooth tummy? I probably won't decide until my consult with Dr. D.
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Adey, my vote is Tummy Tuck - YES and 3D tipple tats -- omg, I love mine and everyone I show (and embarassingly enough, i show EVERYone!) is totally impressed and can't believe they are tats. Stage 2b in December included both for me and I am a very happy camper.
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OMG do not do the plication! 2+ years recovery and still not the same. ASK the doctor if you'll have a significant cosmetic outcome. I wish I skipped it, not worth it to me. It is a HUGE deal.
Adey, will add date.
Sandy, CONGRATULATIONS on 5 years girlie!!!! Whhooop!!!
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