NOLA in September?
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Guys,
Thanks all for your helpful info re: D&Cs, ovaries, uteruses (uteri?), cysts, tamoxifen-induced endometrial thickening, flattened derrieres, etc.! Lots of useful info! Bottom line is I'm less worried about next week and also don't feel so odd for having had these various gynecological complications from the anti-hormone drugs that were pro-hormone down below. I was assuming it was just another example of me always having some weird end-of-the-curve medical problem.
Sara - so sorry to hear about your ordeal! Gosh! AnneW, I agree with you. I had a pretty darned easy time of it compared to Sara and so many of you. It IS sobering! I've never heard about all of these types of problems before! I went into this just worrying about flap failures, not really realizing there's lots of other unpleasant complications that can accompany these procedures, too. Gives me more things to worry about :[ But still, I'd do it all again, and probably will
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Well after all the whining that I have done here so far I figured that I should report back that I am for sure going to NOLA at the end of January. I was able to get everything squared away (or for sure in the right direction) today. Now I just have to get all of the pre-op stuff done and take some Ativan...lol...
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Yay Jamieh!!! Breathe...you will do great!
Pam...so sorry about the drain! You are just 'juicy' as Nordy would say!
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Jamieh-Yay! You're not a whiner....hope you and Lanita were able to sort something out that will work for you. I was on the phone w/ them yesterday and they CAN now do an auto deduct(my request)....which I love coordinated w/ pay periods but were very much all about "Don't stretch yourself, just CALL us if you need to defer a payment..." they are very much into no pressure and Lanita from the get go said "we know you won't be working a while, etc, etc"........I didn't tell her I had disability insurance which I've always felt as a single w/o other supporting income I simply canNOT afford to be w/o. BUT...I made my own payment schedule and am still on track.
Speaking of finances.......I need to do some research...I have saved every receipt(It is almost a personal problem!) but know I need to get organized taxwise and perhaps some of this travel expense is reimburseable thru ins? Probably depends but anyone versed on this please chime in....I'll claim whatever benefit I'm eligible for.
Melanie, your DH is very lucky to have you. I cannot wait to hear about what your DD selects for your new wardrobe!........Have you done your own shopping online or whatever to get an idea of what Melanie likes? I love J.Jill, soft surroundings, Eddie Bauer, and a bunch of other 'aimed at middle aged women' catalogs that will NOT stop coming in the mail. But a bunch seem to run big and you are very small.
Sara...so sorry you've had sunch an extended-MAJOR understatement! I am so confident our guys won't quit until they get you fixed but so sorry you have to keep on! what a long exhausting haul! prayers and good vibes headed your way PLEASE keep us abreast of what happens we WANT to know good bad or otherwise......This almost sounds bad but you know I think our Nola guys thrive on challenge.....of course WE do NOT.... BUT, I KNOW they are committed and that is part of what SO sets them apart from virtually all the other docs that do this stuff.
Pam....ugg on the drain situation.......I think Trishia is right...You and Nordy win.......Where is Nordy? I might have to call her but YES I know- west coast time!
Spring and Anne too.....thank you for sharing/reminding me of your timelines. I know we're all different BUT....Spring tho I didn't have my abd incision lowered it was completely revised due to the open wound so I am thinking we may have had close to same amount of 'work'. I had muscle stitching/plication lower abdomen just like you and PLENTY of bonus lipo so GLAD to know my extra week off which will =4....I'm not the only one and I'm really NOT milking it. Fortunately my boss has been great(at least to my face!). But I'm working towards return jan 11th and do 8 hour shifts-my PT's recomendation. Have really been coasting since home but from here on out will be doing EVERYTHING in my power to get my body ready for January 11th. W/ holidays and nasty weather, getting sick, etc, etc easy to NOT walk/stay active but the time has come to step it up!
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Jamieh - yay!
Sara - you are in my prayers
ccbaby - I get the feeling CT scans are a little like MRI's.. they pick up every little thing.. and alot of them are nothing to worry about.. I had something similar happen... showed enlarged node.. then the next scan.. GONE. ? Nothing like adding a little drama to our otherwise boring lives... (right!) try not to worry (easier said than done).
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I KNOW I need to get a life! I have been obsessed w/ finding this post and these affirmations since yesterday! and so have been thru almost the entire thread of Warrior's 'getting ready for NOLA' from last July, as well as Nordy's 'August recon thread'... I discovered those threads....unfortunately sort of died......sniff sniff!
BUT ours has not! But by God I went all the way thru IT too!
So since many of us have been on this Nola recon road since almost JUNE! As well as our cherished pre 6/2009 Nola alumni AND all the newcomers..................
I felt in the spirit of NEW YEAR's ....resolutions and something to look forward to in 2010....... That we probably need to renew our affirmations....and let's give credit to the author: Springtime, as cut and pasted below....Not sure this could ever be as funny as it was then but still TOTALLY cracks me up!
Springtime wrote:
Linda, Love the pic of you and Mr. Bill!!!
OK, I am still not over Marcia in that bikini!!! I am going to ask the Anesthesiologist to say these affirmations to me:
1. Your surgery will go well, and you will wear a bikini like MARCIA
2. Your surgery is going well, and you can now shop for a bikini like MARCIA's
3. Your surgery went so very well and now can wear your bikini and hang out with MARCIA...
LOL!!!! MAN, if that isn't affirming and inspirational, I don't know what is!!! LOL!!!
OK I'm stepping AWAY from the computer for now.....This morning I became a distributor for Reliv(so I don't have to pay overinflated price)-----no I'm not having conflict of interest here BUT it is a GREAT vitamin has rave reviews....On my way out the door to go get a can.....it's claim to fame supposedly is the bioavailability........you absorb 80% as opposed to the 30% or something that most actually GET from most vitamins. ALL I know is I felt a LOT better after a couple weeks of this stuff when I started taking it about 3or 4 weeks post stage 1 when once again I was dragging a&%.. It was ok'd by CRBS but I ran out a couple weeks before stage 2 and felt like I couldn't justify the big expense so have been on Centrum 2x/day, vit c chewables, calcium and folic acid. But as I've already said I'm still just sort of dragging. I know timeline wise I'll be turning a corner anytime BUT could use a boost!
OK lovelies! Happy New Years!
and I'll probably be back later! the only big party will either be here or at a neighbor's house....just NOT into the whole 'going out' scene at present!
Cheers!
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PJ, for sure, if you can, take the 4 weeks. !!!!
Ladies who have upcoming surgeries. Pls check to see if I have your info (and correct) in the topper list above. Thx.
Spring.
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OK, the affirmations CRACK ME UP! EVERYTIME I READ THEM. Thanks for finding them PJ.
Jamieh - Yeah! You will be fine.
Sara - WELCOME TO OUR THREAD! You are not a DOWNER at all. You have been thru it and deserve all the love and attention we can give to you. I agree with Anne, We all have been thru so much it kinda becomes "old hat" and we can lose sight of the seriousness of the surgeries that we are going thru and the complications that can come with that. Keep your chin up, 2010 is going to be your year!
DEJABOO! Say it aint so, another WEEK! So sorry! HANG TOUGH! Its almost over and you will be DRAIN FREE!!! JUST LIKE WARRIOR SINGS.
CCBABY - Hang ion there, we will wait for our 3-4 month follow up ct together......all will be well. 2010 has nothing but good to offer us, I am sure of it.
PJ - I only know that I like IZOD and LIZ CLAIBORNE golf attire. HA! I will take my Mother with us to kinda buffer the 14 yr old between a 67 yr old. Although I will tell you, my Mom is style queen, always dressing to the nines, looks more like 47 than 67. ARRRGH! I could be in trouble here! My DD already maybe get a "make over" this week, you know MAKE UP...I have never worn it and freankly do not know how really, just a little sun screen and I am usually good to go. Now I have an investment in make up and it takes me an hour to get ready in the morning....YIKES! And to think I used to be a wash and go girl. My DD LOVES IT! She just smiles and tells me how pretty I lool each morning. This morning she says to me "You look pretty, where are you going?" to which I replied "To the kitchen, want to come?" LOL! The things we do to make our children happy!
Happy New Years Guys! THIS IS OUR YEAR! Signed, ITCHY!
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Melanie...Thanks again! Is your itchiness any better?? I have been itching a little bit, but it has nothing to do with my incisions...it is this dang girdle!! I can't wait to be rid of it and the drain. I am pumping out about 50 cc's a day now, so I am hoping soon....
Holtbolt....Yeah, we don't have enough to think about already, huh!? LOL
HAPPY NEW YEAR sisters!!....may 2010 treat us much nicer than 2009 did...I am ready for it!!
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Pam...sorry that the drain will ring in the New Year with you!
If we could only fill it with wine! lolCCBaby- It sounds reassuring that the nodules are nothing and I am praying for you that it is just what the girls said!! TRY not to focus on it.....
Sara, I am so sorry what you are going thru. As Anne said, this is the reality of such a big surgery and its important we all see the good and the not so good. If anyone can fix you, its the team over in NOLA!! We are praying for you for a speedy healing and good outcome. Please know we are here to listen. I know there are others on here who have been in not so ideal situatuions and eventually Plan B works out...xo
Plainjane..Funny you mentioned Vitamins. I was going to ask you girls what kind of vitamins you take...lol How expensive is Reliv? Are you really a rep now?? Do share what works for you...
Springtime.....I know you have a lot of knowledge in the vitamin arena....what do you currently take and and what doses? If you don't mind me asking. With the New year upon us and most of my surgeries done...I hope to put my focus on diet, exercise and maintainence! We all want those Trishia and Marcia's bodies!! lol And I am sure many of you are well on your way to those bodies, like Springtime..lol and many others!
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Hi Spring,
Would you please change my info? Thanks!
Feb 23 Stage 1 DIEP in NOLA (Dr. D)
Insurance finally approved! Yahoo!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Suzanne
PS. I see Hotbolt has the same date/doc....do they do more than one a day? LOL!
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Minnesota:
I was scanning all the postings and found your posting about Tamoxifen very interesting. I was supposed to go on one of them Tamoxifen or Evista years ago and didn't do it. My mother died of ovarian cancer and her mother died of cervical cancer. I just didn't think I wanted anything that would give me an increase risk of cervical or ovarian cancer. But I never heard that if you had both breasts removed that there would be no need for those drugs. I thought those drugs also keep breast cancer from coming back in other areas like the bone? Could you elaborate.
Sarabhead what can I say but I am so so sorry. I can not even imagine what your are feeling. I do think there is no better place than the BreastCenter at NOLA. Other PS told me that I did not have enough stomach fat to have the Diep in MI. Plus I was not a candidate for a double tram. They gave me no hope but implants. I went to NOLA and my options were endless either Diep or GAP I had both options there. Considering my history, all my surgeries, my age, my husband and I both felt that they performed a miracle. I did have to go back in August to have my abdomen closed up, I walked around with a open area for 6 weeks. But I interviewed 5 PS before going with Dr. D. I wish they weren't as busy as they are. I wish they could spend more time with me when I go there. But that being said I would go no where else. You must be weary. I know it was even hard for me to go back for stage 2. Make sure when you go back you have a Monday Clinic day appointment that way they will give you the time you need to discuss your situation. Maybe you will just need time to regain your strength before going through anymore surgeries. You might ask them if they would recommend now high concentrates of Vit C for healing. I went to an alternative dr. in MI and had 4 intravenous vitamin packs with high Vit C and B etc in the mix. (With the centers approval) I really think it helped me with getting through stage 1. I have also heard of women going into oxygen chambers to add in the healing. Especially those that have had radiation and the tissue just won't heal. I guess it is very common if you had radiation that the skin opens up and won't heal. I met a nurse and she had the same problem after having a Diep because of the radiated area. I talked to a PS and he told me of a woman that he just couldn't get to heal and he put her in the oxygen chamber and she closed up and healed. I hope some of my words have helped. I wish I could wrap my arms around you and give you a hug. I will say a prayer for you.
Warrior I hope you are feeling better. I have heard of others having that prickling feeling on their skin. I was told that that sensitivity is due to the little nerves that have been disrupted by the lipo trying to reconnect. I know others on this forum have mentioned similar sensitivity. I had very little lipo (at my request I was chicken) so I do not have any of those problems. I have wore my garmet religiously now for 2 weeks.
How long are we supposed to wear the compression garment?
I called the center today and requested 2 more pairs of the nipple guards. I found out that you wear the nipple guards you come out of surgery with for 7 days. Then you wear the brown nipple guards for 2 more weeks. So that means I have another week. It is so hard to keep them on once you take them off even with tape.
A big thank you goes out to Springtime. I had her position from June to the end of August when I started the forum for the recon ladies of last summer. As much as I enjoyed starting the forum it took a lot of hours posting every night. So thank you Springtime for all your hard work. It is greatly appreciated.
New Years Resolution: I want to take more time for myself. And better care of myself. Eat well, exercise, and laugh more. Realize that this life is a gift and I need to always look for the rainbows.
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second chemo got canceled for today. RBC and platelets still two low, and cant get procrit shot till next week again, so rescheduled me for next week, and neulasta shot the day after. Onc said they would lower my dose some. He said it was not unusal to have to have the dose lowered, and can be done by up to 25% and still be effective. Here's hoping. I am a little bummed about being bumped till next week. I have already scheduled my Stage 2 for my reconstruction, and too many delays will mean I have to change that date too! Anyway, taking it easy....feet still swelling, BP back up, so going back on BP meds, so that should also help feet.
Don't know about the Tamox issue and how I metabolized it. I took it the 5 years, and when my new cancer came, it was NOT er/pr+ but was her2+ - so evidently the tamox worked on THAT type of cancer.....just didn't stop me from getting the other one..... Anyway, everyone have a WONDERFUL new years (((((((((((((((((Hugs to all))))))))))))))))))))
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HelloFromCT - woohoo! Let's hope Dr. D can handle us both and is rested after Mardi Gras!! lol. What time are you scheduled for? Mine is early a.m. Where are you staying?0
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Hi holtbolt! (oops...sorry I called you HOTbolt...hahaha!!!) Not sure yet where I'm staying. I haven't gotten the info from the Center yet. Liz said she would mail it out Monday I think, so should be soon. I may stay at Hope before and somewhere else afterwards.
Do they really do more than one surgery a day? hahaha!!!!!! Wow...they have energy! I am scheduled for DIEP but I don't know the time yet. I guess it must be late if you are early. As soon as I find out I'll let you know. Do you know where you're staying yet?
Suzanne
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HOTbolt, holtbolt, .... hopefully I will be HotButt after this surgery.... lol
Yeah... you experienced NOLA girls... do they do two in one day normally? Mine's a delayed recon Bilateral SGAP. If I'm not mistaken mine may be a little shorter of a surgery because there is no mastectomy involved (done)... but I may be mistaken on that.... ?
I am at Hope Lodge beforehand and Homewood Suites after... so far... that's the plan....
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Hahaha...I'm sure you will be HotButt if you're having SGAP!
I'll be curious to hear from the NOLA girls about the 2 surgeries...
Did you make the reservations at Hope and HOmewood yourself? I haven't even gotten that far.
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HellofromCT - the center must make the reservations for Hopelodge for you. Katie Stager will do this for you. It is nice there and you will be comfortable, so many nice people to meet and everything you need is there. I stayed there for both 1 and 2. Never had a problem. The only real issue is the TV's are not so good, small and limited channels, I did not mind, was resting most of the time anyway but DH did not like it. Before surgeries, we were only in the lodge to sleep. Staying there worked for us, we had a car and could go when we wanted to. There is not too much near the lodge, kind of out of the way. Good Luck!
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I would check with NOLA about 2 Stage 1s being scheduled for the same day. I didnt think they did that.
PJ Let us know if you talk to Nordy...ive been wondering about her.
I think she needs to show me how to do the Drain Dance.
Gin-Im sorry that you had to Postpone your Chemo. Hope that things are much different next Appt!
Suzanne-Welcome aboard- Katie at the center is very helpful & happy to make your reservations if you want her to.
Thanks for the Drain Sympathy...I guess Im so attached to it- I just dont want to give it up.
Kathy- I may try Vodka instead of Wine- I can fill a shot glass in no time! Ill tell Dr M it was Your idea! LOL
Pam
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Thanks Pam and Melanie. I thought it sounded funny too--2 surgeries on one day. It may be a mix-up with my date. I emailed Liz about it but haven't heard back yet. If I have to have another day, so be it. I'm just so glad that my insurance finally approved it!
I've been reading this thread from the beginning, and now I want to go back and re-read all of the info I should have written down about what I will need before, during and after. Thanks to everyone for all of the great detailed information. It is so helpful to those awaiting their surgeries.
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Coming back to check in a say "IT IS DONE" I will be on the airplane at the end of the month....WHOOOOO!!!!! A couple final things to do in the next couple of weeks before I go.
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Dear Holbolt:
I really don't know if they do more than one surgery a day. I was delayed bilateral DIEP. I was told that for a delayed diep to expect about 51/2-61/2 - for a delayed gap 61/2 - 71/2. I ended up being in surgery for almost 10 hours. So even though they give you an estimate I have found out that most women are under much longer than anticipated. I know my husband started to get nervous because I was in there so long.
Sassie
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Has anyone heard from WPLD after surgery?
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So my doc's office calls with the PET results and there is an area in the uterus that has a very high degree of metabolic uptake, so they are sending me in for a pelvic MRI on Monday. UGH. I guess I'll get over my claustrophobia in a hurry...LOL!
Anway, I have a history of fibroids. They showed up on my CT scan in March. Does anyone else have fibroids and have them show up on a PET? I am totally thinking that is what they are seeing. I'm half tempted to NOT have an MRI.
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I have emailed WPLD a few times & I heard back from her. I have not heard from her in a few days. I hope she is doing ok. Stage 2 was very hard for her.
I hope she will pop in here soon to share her stage 2 experience.
Pam (My Delayed Symastia Repair Gap was 10 hrs)
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Hope that it is just Fibroids Trishia!
I had lots of big fibroids...but never a PET. So cant help you there. Maybe start a thread asking that question?
Pam
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I know that when I got my surgery 2 weeks ago, I met another lady at the Hope Lodge (she is Brooke here on bc.org) and she got her stacked DIEP surgery the same day and time I got my HIP flap surgery. (Holtbolt - My surgery last 4 1/2 hours because I didn't need the mastectomy and only on one side too.) When I was in the front waiting area before surgery, she was there and so were 3 other ladies. We were all called back into the 'prep' area before surgery at about the same time. I heard that one lady was getting a lymph node transfer, but I don't know what the other 2 were getting. I did hear the nurses talking about how one lady showed up 3 hours early and they went ahead and squeezed her in. Anyway, it looks like they had 5 different types of surgeries going on at the same time when I was there!
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Thanks so much to everyone who replied...I was going to say you have no idea how much your kind thoughts, encouraging words and prayers mean...but then maybe you all are the only people who do. One of the hardest things about all my complications is that people don't really get why you would go out of town in the first place and with it not going well some folks seem pretty quick to judge. I'm getting a thicker skin, but it's nice to hear from people who understand.
I do have a lot of confidence in the NOLA doc's--and it's good to hear good things from Dr. S's alumni. I was going to see Dr. Allen for still another opinion, but while he agreed to see me for a consult ($450) he has a policy that he wouldn't operate on someone previously treated elsewhere. Perhaps I should have seen him anyway, but I didn't want to be confused by additional recommendations that I might not be able to follow up on. Anyway, I trust that I am on the right path, and I am grateful Dr. S will see me.
I'm less blue today...I do claim 2010 will be a good year. I'm dancing with NED (no evidence of disease) so if it takes a little longer to get the breasts right--so be it!
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Happy New Year to All !!!!
Sara- sorry for all you have gone through...Dr. Allen does TUG. thank goodness because I did not have adequate stomach tissue and I did not want to mess with my rearend. I know of someone that used Dr Allen after surgeries with other Doctors. He may be able to make it better- at least give you another tissue/donor option.
Any chance someone can break down your necrosis into smaller parts and then it may soften with time?
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Sara hang in there and PLEASE keep us up to date....Agreed that nobody gets it unless you've lived it(or something similar since you sort of unfortunately trumped us!).
I didn't call Nordy yesterday but will today. I DID go walk on the treadmill for 30 minutes-to GET outta the house but HR stayed 80ish.....probably walked 1.25 miles at a VERY LOW speed.....but it is OK! Have to start someplace.....fun to people watch and live vicariously thru a few people at 24 hour fitness. Then went to Sam's to go shopping....then came home and did precious little! Baby steps! and it is still the holidays....less than one week until the 10 lb restriction is over.
Trishia....remember petscans show a LOT of stuff and per my med onc it is a nonspecific diagnostic...they even show inflammation....so I am certainly no expert BUT let them prove no harm first......easy for me to say....sorry my dear....but please let them make sure you're ok.
On the 2 surgeries/day topic........? dunno....I Do KNOW that I had bilateral mastect w/ immed recon via DIEP and my stage 1 was only 5.5 hours. I also know having multiple MD's working on you it takes a LOT less time. ALSO that our docs are big team players and go in and help each other out until all the cases are done. BUT I certainly wouldn't hesitate to ask.....for some reason I thought I remembered reading or someone telling me it's not unusual for them to do one stage 1 and one stage 2/day.....BUT I guess it IS all relevant as to how much they're doing/complications, degree of difficulty, etc, etc......My stage 2 took 4 hours and I think that is long. I think it's OK to ask......You need to know for your peace of mind and they're receptive to questions concerns.
Melanie, you crack me up....I think you look fabulous w/o makeup....were you really going w/o when we met in sept? You are lucky! Your mom and your daughter...LOL! How is the bra situation? Have you bought those yet? or is it too soon w/ the nipple protectors? I've yet to buy any new ones........Still wearing one of the 3 post op black hook in fronts they provided...They're pretty! But I know I still haven't completely 'settled' at least not the radiated side. Just too soon for me and I want to get past the next 2-3 weeks at least before buying anything new......I have enough I can wear for now plus a size smaller(from a couple years ago) already in my closet.
Hello from CT- YAY! You've been working long and hard to make this happen!
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