NOLA in September?
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Ginnie
Good luck with your procedure on Monday. I am sure the good Drs at Nola will have you all fixed up in no time and on your way. It just angers me that your local Drs are not willing to help you out. Take care.
Spring good to hear that you are feeling better and more like yourself.
My only complaint is not getting a good 4-6 hrs of sleep at night. I just HATE sleeping on my back and I wake every 2-3hrs. I am counting down the weeks till I can sleep on my side again.
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Oh my goodness where to start!
Gin, I am GLAD you're going back. You will be well taken care of. I am angry you can't get what you need at home BUT...it's a short plane ride. Just please appreciate and ask them to say this both for you and for me: "Ya breasts look garate!" w/ the Nola accent...I still crack up about that and miss hearing it! Bet you won't have to ask for it!
Minnesota, you look fabulous....ditto on so much of what all of us keep saying over and over....I did take your advice and kept a journal...actually have been keeping a care bridge website and will happily give access to anyone interested. It's very helpful for people to keep up but honestly for me too! Yes, Nola hx is truly fascinating and my next trip will be w/ a big time reader who loves Anne Rice so I know we'll do different things.
Melanie...and EVERYONE!!!!!!!! Tomorrow is Melanie's bday...she is only 1 yr older than me....and my bday is sunday! HBD to us! we got new breasts this year! beats the hell outta "I have some difficult news' phone converstaion I got last year ON MY BIRTHDAY,,,which was a saturday last year. At any rate it truly WAS a gift. I wouldn't be here w/ all you guys if it hadn't been that way...AND the other big gift? I'm the poster child for early detection....nothing ever seen or felt just showed up small and early on high dollar diagnostics that are no longer necessary! woo hoo! Melanie...I still almost have tears when I remember what you said the night before my surgery....."I'm so glad you don't have to wake up w/ nothing"..And I'm still so sorry you had to go thru that...but...who are you back at work? NOT ME! not for a while.
Ok, so also, someone asked what is DFW....it is Dallas/Fort Worth airport...or just the basic vicinity as the combined population nears at least~ 5-8 million now w/ both big cities and suburbs. I'm on my patio now...it's super nice weather! And the DFW airport is so close...planes are just part of life. I grew up in FTW, went to college in Arlington and now work in dallas. I;m as far west in dallas county as possible...Guess I didn't make it too far but this is home and it's convenient and easy to go elsewhere!
So last wkend I tried to be lazy because I know I'm overdoing. Monday am I woke up about 4 in excruciating pain esp to L breast and it was quite a bit bigger. I sat up, changed clothes, felt nauseaus but knew I'd have to see someone. By 7am I was on the phone to local PS to see if Icould get in. I'd been in contact w/ him and he said "if I needed anything at all". His nurse called me back, he was in OR all day but she would find out what he wanted to do. i was pretty sure seroma hematoma or???? very big heavy L chest pain. called St Charles Hospital and Dr. d's office sent pics that didn't really look different but i just knew I felt lousy! Since i couldn't get in w/ PS called local BS nurse who got me in w/ another BS(mine's outta town). On pain meds so had to call someone to taxi me...UUUggg I HATE asking for help! Found my jazzercise/yoga teacher whose husband is an ENT on campus...she helped me out. Meanwhile....I DID it. Called my oldest sister and told her: " I adopted twins".....I was crying told her what I meant, she got it but I said I'm thrilled,best thing I've ever done but not doing so good being alone and VERY difficult to DO stuff. Gave her my caringbridge info and she passed on info to the rest of the too big family, sayign they want to help.......have yet to hear anything BUT.....what are ya gonna do? there was a reason i left them out in the first place. Talked to Nordy that day too....she's so sweet told me I could come to WA and sit and be if needed.
I had about 30cc of fluid drained from L breast and then DID see the PS at UTSW on tuesday. ALL was a very positive experience...YES, i had to say "I didn't have a tram" a couple times to another ps and to the bs's BUT...we all just know there's a learning curve! got an RX for LE therapy and wound care and started that on wednesday and went today too. i have a LOT of fluid that needs to mobilize in the breasts mostly Left(but she was previously lumpectomied and radiated less than 1 yr ago)...but also abd, etc. My LE lady wants me to wear biker shorts as well as abd binder so I do when I can.
PROBLEM: I am eating too much! Have been in chips and pico daily mode not to mention other stuff. This can't be helping! The cooking martha stewart stuff had to stop, and pretty much did but sheesh I stay busy!
So I'm 3.5 weeks out still have one abd drain...very close but LE therapist really thought drainage would increase as we mobilize so no hurry. dr. D switched me to keflex 750 on tues or wed.
Ok, htink I covered most. i now NEED my naps...guess the adrenaline wore off...Thank GOD!
It's all good LE lady tells me I'll/we'll see big differences in the 3rd week that i had classic postop stuff. YES, I' backed up fluid wise but it will improve...I KNOW it. Ok, betetr run for now. Wil try to stya in better touch!
HOPE all will be betetr and my stage 2 can remain as planned and I cam hook up w/ you gals then!
cheers! xoxo,
jennifer
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Happy Bday Melanie!!! Happy Bday Jennifer (soon!!)
Jennifer, Yikes. Glad you are getting the care you need. Sorry to hear about the dumb FLUID!!!! You will feel better once that drain is out - that's the start of getting more comfortable if you ask me!
Stephanie. The back sleeping about drove me nuts. I felt I really started feeling better once I was allowed to sleep on side, but then it took a while to get comfortable doing that (I had the hyper-sensitive skin issue!).
I noticed a big diff at 4 weeks / 1 month, then 5 weeks, I really started feeling myself. I was 6 wks yesterday, and feel I'm over it mostly! Just being kind to myself and sleeping as much as I want. Eating right. Moving during the day. What more could a healing body ask for?
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Melanie and Jennifer: HAPPY BIRTHDAY!!!!
Jennifer - glad you are feeling better! Take it easy!!!
I have decided the heck with taking it easy for the sake of fluid management. Obviously not moving hasn't worked, so I am back to yoga - short sessions twice a day, and tomorrow I am getting on my bike! I can't stand the sitting around and I know that my body needs to MOVE to heal and stay healthy. Plus, I really need the exercise for my mental outlet! I have been known to climb on a treadmill and go until I can't go anymore, with tears streaming down my face when I have been having a really tough time with life. It has been a while since I had to do that - the last time was last Dec. when I miscarried - but it works like therapy for me. Never mind that everyone at the gym wonders what is up with the crazy woman on the treadmill...
So... fluid or not, I am working out! Gin - I will be thinking of you on Sunday and praying for a safe trip and a quick recovery. Hang in there!!!
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Hey, Spring,
Could you add me to the list? I'm having Stage 2 SGAP in Charleston on Nov 16. Even though I'm not in NOLA with the gang, I'll be looking for "virtual recovery buddies"!!
OMG. That's just one month away. I can't believe it!
Anne
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Thanks everyone, will keep you updated, and Happy Birthday Jennifer and Melanie. I can relate to the "poster child comment" Both of my breast cancers were found only by mammo - no lumps, etc. and both were stage 1 (which was very important, since both were also grade 3!) It was research I did for my sisters breast cancer that helped me know what to do about my own.
Anyway, we are ALL lucky to have also found NOLA. I don't know what the other person said Nordy, but we all know better. They are not Gods, just very talented men, so it is possible that that have made someone unhappy, but I, as well as all here do trust them implicitly, because, even in my case when things don't go right, they take care of it!! So I say feel sorry for her, Nordy, don't let her upset ya. Save your energy for all that exercising you are doing so you can show off those awesome tatas those docs in NO gave ya!!
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Happy Birthday Melaine and Jennifer!!!!
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Lisa, I added you above. Who is your Dr.??
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Spring, it is helpful to know it took a bit longer.....I am thinking 4 or 6 weeks. Just this past week has been a major backward...or slow down ...but it's OK...and hopefully now on the right track. My work time off was thru 11/2 as per the magic 6 wks time frame filled out on the FMLA, I think by Dr. D. But I really don't plan on returning until 11/16 and that may be part time, like 3 -8 hour shifts...or some non pt care stuff....who knows.....things change week by week. Spring...are your breasts soft? anybody else have the hard, tenderness I do at this 3-4 weeks stage. MY le girl says I'll see a big differnece in 3 weeks of le therapy.....but if anybody has personal experience don't hesitate to throw me a bone!
Nordy, I hear ya but be careful girl! From someone else who OVERdoes.....
I'm thinking yoga sounds great. I have that in my future plans...I told you guys my friend/ex jazzercise teacher is now certified in yoga and LOVES it. She is 54...OMG she looks awesome. The best shape I was ever in was in her strength training class about 10 yrs ago. Got down to 17% body fat. Plus yoga is so good for relaxation, etc...I think it would be a good move for me and there is a big center near work. Melinda has her husband -chief of ENT doing yoga classes there. Nice couple, very unpretentious...anybody ever needs cochlear implants let me know and I can hook you up!
I wrote a thank you to Kathy Steligo today(author of 'The Breast Reconstruction Guidebook'). I ordered 5 books yesterday. My LE girl has my copy and we'll switch out when they come in.
Anybody know....should we get flu shots? I haven't been too worried as I'm home. protected most of the time. I know my friends at work have all rec'd regular flu vaccine...and the front liners like ER personel got the swine flu vaccine(they ran out).
Race for the cure happens in dallas tomorrow. Won't be there.We're also having TX OU wkend....quite the rivalry, there's lots of traffic and then all go to the State fair in Dallas after/before the game.
If I participate in Komen race for cure it will be the Tarrant County one in FTW...that one happens in April...Think I'll be in better form then- and I just LIKE FTW better-less pretense. I AM ready for the pink stuff to get marked down! I'm not buying anymore anything 'for the cure' because it will be marked down in 2 weeks!
I think I will go get my hair colored, cut and blown out straight tomorrow. Have been living nappy w/ all the humidity. I usually color the roots 3-4 weeks and go every 8 weeks but not sure I can reach all I need to. Dread driving in TX OU traffic tho...we'll see.
Think I'll take some vicodin and go to bed!
night girls, xoxo,
jennifer
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Oh yeah...forgot to share my nipple 911 story. Last Tuesdya am when I went to plastic guy here(i had 30 or 40 cc's pulled off L breast the day before by the BS/imaging sonogram guy)..... Anyhoo, I really wanted the plastic guy,and so did the BS guys to have a look and tell me the flaps were ok. of course everyone thought I looked great. When I took off the white Dr. Massey bra provided by the center(i was in the size small)...The L nipple which had been scabbed over but everyone knew and was not concerned. When i took off the bra the scab came off and of course I sort offreaked like Oh S$%t! did my nipple just come off? Blood dripped, we got some gauze on. I laid down and let the ps remove some more sutures and the glue below the R breast. He did something to the L nipple and said "The good news is your nipple survived!" I looked down he'd cleaned it up and I had a new pink nipple of my own! We put some xerofoam over it to keep moist so I didn't pull off more scab and I'm still good. It's a bit more tender...so yeah there is some sensation? Anyhoo, that's the nipple 911 story!
Trishia I sent you a pm since we have a common date. warrior I need to send you one as I do w/ nebrnan and iamc and whomever else is there...I should fly in 12/8 then surg 12/10 and I probably won't go home until 12/14. All god willing. I have a lot of edema that needs to resolve and more healing between now and then but praying for all to happen!
ok, I gotta wind down!
night ladies!
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Jennifer, mine are soft. If you are concerned, call the center and ask about it. I would!
And if you need more time off work, call the Center and ask the nurses to give you an extension. I did this once for a surgery I had years ago. just told the doc, i am not ready. He gave me 2 more weeks. Everybody is different.
I got a flu shot at my cancer center.
Yikes about the nipple!!!! Glad it is A-Okay!!!
Spring.
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Wow,the thread was Busy yesterday!
Gin- Good luck on Monday! They will take good care of you.
Happy Birthday Jennifer and Melanie!
I will have new Boobs & CLEAVAGE for my Nov. bday!
Nordy- I always miss exercising after surgeries too.
Hope this goes fine for you with less fluid being made! right!
Pam
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Thanks Spring, I have lots of folks tending to me. I'll probably call the center tho and send pics....almost starting to feel like too many cooks in the kitchen ya know?
I know I'll have no problems extending the dates. But I marvel about the six week thing...Bet I'll be a world different when that day comes but nice to know it's not a have to!
R breast softening up Lwill be slower...just has more history they say most lymphatics in the skin and mine had rads and I had a time w/ the rads. I think back to seroma issue in June and I healed up nicely. I pray for the same results and know I'll have plenty helping me thru this!
OK confession time...i slept w/o my abd binder last pm.....have done a couple times cause I needed a break....Now I have an ouchie about midway. the binder went back on at 7am and feels better. Nurse noncompliance...Dr. D says curse of the nurse also told me a story about typical health care person=noncompliance....I interjected "oh I'm VERY compliant" My nose grows longer! But think I'll stay fixated on following nola directions and put them back as first in charge...as they have been.....but Gosh I got a lot of good ones here too! They're the indians tho not the chief!
Oh yeah, Sandy/Mom's daughter...i LOVE that cool icon! who did that one? pretty pretty pretty...did you copyright and sell to Dr. D...kidding! He's just so cool....so down to earth kept telling me about fishing while I was there and I think I convinced him to go to Alaska...It is Soo beautiful and so hard to ever go fishing elsewhere once you've been...wild salmon and halibut...how can you go wrong.
ok, I'm rambling and obnoxious, forgive me if I offend...swear I don't mean to...love you all.
I better go get ready for the fence guy to come good fences make good neighbors right?
weather here lovely...Mel HAPPY bIRTHDAY...call you later or sooner(but NOt OK sooners!)
anybody have snow? Mel?
xoxo,
jennifer
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Thanks for the Birthday wishes everyone!
It is calling for snow this weekend in the high mountain areas, just rainy and cool where I am, the trees are LOVELY!
Ok, I am really bummed that I will be the only one in NOLA for stage 2, so close to Christmas, I hope I will be able to manage thru the holidays and I hope I can get everything done before I go. If that happens it will be a first. I was thinking I might get to meet you WARRIOR, but I think you will most likely be leaving the day I arrive......we will wave as we pass each other.
Does anyone know how long we have to stay after stage 2 surgery?
We are thinking of driving again, UGH! 900 miles! The plane fair is so expensive during the holidays and the thought of paying that exorbant fair to just be couped on the plane with all those germs really creaps me out. I know....way to obsessive, I just really CAN NOT get this flu stuff, DO NOT HAVE time for it.
I have been walking too and will start doing yoga next week. It will be 5 weeks on Wednesday, I am hoping to golf at 6 weeks, but I am not sure I can pull off that hip and waist turn quite yet, it may take a little longer. Oh well.........it will be here soon enough.
Have a lovely weekend everyone. I am going to make me a birthday cake today.......whats your favorite kind JenniferJane, I cannot decide between pound cake or chocolate cake?
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Jennifer, Thinking of you and sorry about the family situation. PLEASE wear that compression garment. I know someone that did not and her stitches reopened!!
Just wanted to add for anyone who cares- that not all of us are Center of Breast Reconstruction at NOLA. I did go to New Orleans but used Dr Allen. He is in New Orleans. NYC , and Charleston. Ladies, There are experienced Microvascular surgeons in many places that are highly recommended. also Roper in SC and Dr Massey- Utah
To name some-
Dr Sullivan, Dr Massey, Dr Allen, Dr Joshua Levine, Dr Connie Chen, Dr Craigie, Dr DellaCrocce,Dr Kline, Dr Pisano, Dr Ledoux and who else?
I would hate it if someone could not travel to New Orleans or insurance issues or could be somewhere closer to home and did not know more options. It does not matter who you use AS LONG as they have knowledge and experience. just thought I would throw it out there.....please add to the list for women that are considering Flaps....
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Dr DellaCroce..
also I just want to correct something I had written. My Doctor is suggesting Fat Grafting NOT Fat Graphing- I misheard him.
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Melanie, I started gentle yoga at 5 weeks, all fine, the hardest thing was getting down onto the floor!!!. Today I moved up to regular yoga, and ouchie a bit on the down dog. I did modified version and rested. (all at home, not in studio!). You would not believe how much Abs you use in Down dog! I never realized. (Plus it was a flow from dog to plank, anyway).
OH. I was told you need to stay 3 days after stage 2. (This is for CRBS in NOLA). So my surgery is on a Weds. They said I could leave on Sat. Also, they do not routinely book post-surgical appts after stage 2, unless you want one. Since my third day is a Sat, I don't want to wait until Monday, leave Tuesday, too many more days in hotel! Wanna get home. We're leaving Sat!!! I figure, I will be seen by a doctor when released from the hospital on Thursday. That'll do!!
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OK Ladies what is the best way to get that glue off. It has been 3 weeks and I have been gently rubbing it while I shower but it is coming off ever so slowly. And what's with that nylon type fishing line stuff. I asked Sandy and she told me to just snip it off close to the skin but I have 2 areas under my breast and I am afraid I may leave something poking out, Should I see a Dr about removing those?
Going to my first exercise class this morning to improve the movement of my arms. I am not able to raise my arms very high over my shoulder yet.
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Melanie - I haven't had to use the services yet as I just had my mastectomy and won't do recon til spring thanks to rads. Anyway, I am in Oregon and was trying to think of how to work out the airfare portion of the trip. I emailed the American Cancer Society, and they have a national patient travel coordinator that will work with patients and help them get their airfare on mercy medical flights, commercial flights, private flights, using airmiles or whatever they can to help. I believe she also said cancer patients are typically given 1 trip a year for treatments/doctor appts?
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Thx Spring! Looking forward to popping the DVD in, but not the same as my beautiful Glenda! She is awesome and I just am SO relaxed after her yoga class.
Macksix- I trimmed the fishing line as close as I could to the skin, thats what Dr D told me to do. then I gently put neosporin on the areas with stitches, this kinda helps them to disolve a bit. It has worked pretty well, I only about 2 trouble areas remaining. And the glue continues to roll off after each shower, I have very little left and I am 41/2 weeks.
Dragonfly -good info about the plane fair, thank you.
So I have stage 2 surgery on the 17th, thats a Thursday, depending on how I feel, I may leave early too....I hope it wont be bad. I am a little nervous about it.
xxoo Mel
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The glue comes off slowly... I used to just soap up a washcloth and gently wash - but probably not until 3-4 weeks out. Now it is all off... not sure when it was all off though!
Dragonfly- my girlfriend used Mercy airlift... I believe they will do one flight per year. You can check into Southwest - they have specials and are pretty cheap if you get it early enough. The funny thing is I flew out from Seattle and it was cheaper than flying from PDX. Go figure.
Oh, who asked about other flap surgeons?... Oh, Happy29 - I can add the docs at PRMA. I had a consult there and really liked them (I had Dr. Pisano). I ultimately did not go there because I did not have enough belly fat for DIEP to get more than an A cup and they only do SGAP one at a time. BUT, I met a lady in the waiting room who had her DIEP the week before w/Dr. Ledoux - she was extremely happy and still is (we still keep in touch). She recommends them highly.
Been feeling GREAT w/doing Yoga the past few days. I am definately tight in the hip/buttock area - am hoping that the yoga does not increase fluid!!! I am staying compressed in a size smaller spanx and some other no name brand that I have from years ago (but cannot find it again). Am hoping they continue to do their job!!!
OMG, gotta run - have a little one w/poopy pants... what is it about the computer that seems to stimulate BM's in my kids?????
Oh, Jen and Mel - Oct is a great month to be born, my little one just turned 2 on Thurs - it seems she is in good company!!!
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Eve, What a great gift to breast cancer survivors looking for hope and knowledge to become whole again. Your message was eloquently said. Thank you so much. I am heading off for my reconstruction in just over 3 weeks.
Linda
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Hi Girls..Sorry I havent been on much...I am in Florida visiting my Mom. My siblings and I all surprised her for her birthday! Since I live in Michigan, Florida is a welcomed vacation!
HAPPY BIRTHDAY JENNIFER AND MELANIE
Spring-= You need to stay HOW many days IN hospital??? I have Massey at NOLA and think I am staying just overnight...hmmmmm Do tell me what you know about why so long or is the good ol boys NORMAL routine??!
Ginnie...Thinking of you
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HAPPY BIRTHDAY JENNIFER AND MELANIE!!
Carolynn
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Happy, THANK YOU for your reference to other qualified and compassionate microsurgeons outside of NOLA. I am not able to go to NOLA because of my insurance and NOLA not being in network, but Roper in SC is in network for me and is also considered one of the cutting edge hospitals in the US for doing microsurgical breast reconstruction. Yes, Roper doesn't have the "Dream Team" or Spa like experience of NOLA, but still has very qualified doctors such as Allen, Craigie, Kline and Massey. My doctors will be Massey and Craigie. I am scheduled for Nov. 12 and I will be traveling from MI. Just to let all you ladies know in case you might have trouble with lymphedema now or in the future; Dr. Massey is one of only a few doctors in the WORLD that does lymph node transfer surgery for those unfortunate to get lymphedema. She lives in Chicago, but practices and does microsurgical breast reconstruction in NOLA with Drs. D and Sullivan, In South Carolina with Craigie and Kline and also travels to Utah where she preformed the first perforator flap breast reconstruction in the state of Utah only 2 weeks after the cancer center opened its doors . Massey in my opinion is faulous. Just my 2 cents worth. Thanks Happy!!0
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Spring, if it's OK I would like to be added to the list above. I will be in SC on Nov 12 for DIEP surgery, Stage I with Massey and Craigie. I love the camaraderie of all you ladies and love this thread. Thanks, Linda
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Warrior,
I have Dr. Massey, too, but in SC. I'll be staying one night in the hospital for Stage 2, barring any issues, but she prefer I stay local for an extra day at least. So I'll have surgery on a Monday, then drive up to Myrtle Beach on Wed to visit family for several days before flying home. She wanted me to be pretty flexible with dates in case I needed extra time in the hospital.
Anne
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Stephanie - I had my regular follow-up appt with my BS 3-4 wks post op and she helped me get the rest of those pokey stitches out. She used an alcohol wipe to rub off the rest of the glue and then trimmed the stitches that she could find. It was great to have her help as I could not get the ones under my breast. She said the suture is absorbable and sometimes once it absorbs on the inside it is easier to pull off the part left on the outside. Probably time would have taken care of it but I was glad to have the help getting them all cut off. If you cut them out yourself the nurse at NOLA said to be sure to get the knots - I missed a couple and the skin got red and irritated until I could get the knots out.
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Happy Birthday Melanie and Jennifer! I received a birthday card from the Center today! I remember two years ago they sent me one, when I was waiting to go there for the very first time. I was so surprised, because I didn't feel like I was even officially a patient yet. They are so thoughtful!
I employ an artist and I gave her some examples of what I wanted, had her incorporate the symbols with special meaning to those of us who've be blessed to go to NOLA, and this is what we came up with. We are doing it on 1x1 boy beater tanks, a raw-edge v-neck tank, and on t-shirts--long and short sleeve. It looks best on white, but is also pretty on pink. In addition to the pink ribbon, tiara, and fleur de lis, there are also a pink rose, wings, and a big heart. It is embellished with clear crystals. Lots of symbolism.
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Linda, I added your specs to the listing above.
Kathy,
- ONE NIGHT in hospital!
- Three nights in NOLA before you can fly or drive home!
Spring.
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