NOLA in September?
Comments
-
Thanks Spring. Which style did you like in the Marena? Do you think the non-zip run a whole size smaller than the zip? (sorry for all of these questions....)
And on the subject....tonight is my first night with no compression garment. Now I'm scared to take the damn thing off !! And no bra either??? Yikes. Totally scary. I feel like I might fall apart!
Earlier today I saw a lot of discussion on the subject, near and dear to us all, of peeing in ones pants while wearing the DOM and I wanted to add a very helpful tip I read on here a ways back. -- which has saved me on MANY occasions! When wearing a black DOM don't wear black underpants! Sitting on a toilet with a DOM on your tush is so disconcerting that it's easy to forget about those panties unless they really stand out in contrast to the DOM. As Eve said... If you forget once, you probably won't do it again. If you forget twice... you'll really remember .
0 -
Betsy, thanks. I read Dr. Ds site, too. And have been told many different versions by various Center folks along the way -- at pre-op, in the hospital, at post-op, telephone follow-up... I find it very frustrating. I want to do the best thing, of course. After such a long and difficult journey, I will do whatever it takes to maximize the outcome. Just wish I knew what the heck that is.
0 -
Thank you, Kathryn, for explaining the difference between a hip flap and SGAP! For some reason, I have never quite grasped the difference until your explanation, since the incision line in pictures always looked so much the same to me. Now I get it! I had an SGAP, so until stage 2, it looked like I had a big shark bite out of my derriere. Now everything looks great.
Besa - with a unilateral, he'll also do whatever needs to be done to attain symetry between the donor side and the other. In my case, I'm not sure how he did it, but it worked!
0 -
Jerusha - Great idea! And I will admit now, that the second time it happened to me was in NOLA when a bunch of us met and had dinner at one of the fancy restaurants. I can't even rermember who all was there - but Swastew and her friend and Sandy. Marsha, maybe. Nordy? Geez, I can't remember - my brain is mush. But it was the time Swastew flashed guys on the balcony on Bourbon with big plastic breasts she bought and then totally freaked out Dr. S. by having them concealed under her gown before he examined her and then told him she was having problems with some hard areas in her breasts - LOLOLOLOL!!!!!!! But I digress. Anyway, back to the restaurant. So before we left to go on Bourbon (and we had even just been talking about this forgetting to pull underwear down - and Nordy's solution, BTW, is to go "commando" as she calls it), we all used the bathroom, and I'm in there and I actually forgot again!!!!! I was so embarassed to be so stupid that I didn't even tell anyone I'd done it, except for Sandy - I mean how could I do this after just having been talking about it!!!!!! We were not near the hotel and luckily we did not sit down anymore while we were out!
Jerusha - It will feel heavenly without the dom tonite! But I found that later, when wearing jeans, it was more comfortable wearing it for a while because it still felt so numb and weird and even sore having the fabric rub on my skin. But luckily it got better and I ditched the dom for good. Oh, until now.
0 -
Good luck tomorrow, Lisa and CCbaby!
0 -
Aww, Minn, thank you. I'm looking forward to it, but kind of putting off going to sleep . I had an "extended" DIEP so my initial incision goes all the way to the very edges of my hips. At Stage 2 , Dr S extended the incisions more to go all the way around to my back -- within a few inches of each other in order to smooth everything out ( and threw away all that good fat). So my incision goes almost all the way 360 around. A fellow DIEPer said ( lovingly!) that if my sutures busted open my top half might topple off. Haha. We got a chuckle out of this image , but that's how I feel taking off my Dom!!
0 -
Well, Jerusha, you can keep wearing it as long as u like : )
0 -
Besa - I always tell people - you have to be your own best advocate. Sounds like you had to learn that early on and are doing a GREAT job!
Spring... shhhhh... you are hurting the Dom's feelings! Thanks for changing my dates!
Sandy - I have a girlfriend here that went to Marga and actually is one of her mermaids on the website. I want one of those shirts for her. Shall I just call you or do you want me to order from your website?
KBodie - Yes... it is always something, right? First one surgery, then a bigger surgery. I had found out that my family has a high incidence of uterine cancer (not ovarian like my mom initially told me) so I tried to get my gyn/onc to leave my ovaries... He advised against it given the high incidence of breast cancer in addition to the ovarian cancer. So... we did. I have to say, Spring led me to Estrace vaginal suppositories, which have changed me life after my hsyt/bso. I thought I would never be able to... uh... in the words of Eddie Murphy, "have relations" without pain after my surgery, but these things are a life saver. My doc had me on vagifem, but it was a small fortune - I have found that the suppositories work just as well. I believe both are bioidenticals, and because they are intravaginal - they do not have much of a systemic affect. (I use a phytoestrogen cream for the hot flashes and mood swings - which both decreased significantly within the first 2 weeks of use). My Med onc is a man - and so sometimes I have to remind him that we are looking at QUALITY of life issues here, because even though I was triple neg, he would prefer that I don't use anything. But who am I helping if I can't be intimate with my husband (therefore he would be crabby) and if I am crying or yelling at my kids/hubby and can't sleep because I am pulling my covers on and off. If you have a good medical team that will work with you on keeping the menopausal symptoms to a minimum - that will be so beneficial! Again, you have to do what is best for YOU. We are all different and all have different circumstances/histories/ages, etc - so what works for one may not work for the other. You do what is best for you! Lots of hugs as this can all be so overwhelming!!!
And ARGH! I just found out that the PS across the river that is now doing DIEP - snags people in with the "well, it might have to be a muscle sparing free tram" line and has them sign a consent for both... just another reason to go to NOLA!!!
0 -
Jerusha - or just don't wear underpants!
0 -
LOL - Eve - I was posting as I was reading and just read that you wrote my solution! Yes, Commando is the way to go!!! And I think it was LouAnn and Marsha that were with you on that trip! Although I wish I was there!
CCBaby!!! I can't believe you are back there already! You will do great!
Lisa - You will do awesome too! One of you had better give miss Deidre a big hug for me in pre-op! Tell her Nordy with the CRNA hubby is sending hugs! I LOVE her!!!
0 -
So many decisions in such a short time. I would take it one step at a time. If you are going through chemotherapy, it may well take you into menopause depending on your age and the dosage. I say if you feel comfortable taking them out, you will do it at the time that is right for you.
0 -
Jerusha... if in doubt, just keep wearing it... it can't hurt, only help... I agree, I have gotten some conflicting answers... I think the concensus is that you must wear it for 2 weeks, but the longer you can wear it the better. Dr D said 6 weeks for optimal effect. I wore mine for 8 after hip flaps and 3-4 post DIEP and as annoying as it is, the time does pass... and this is all about long term benefits...
0 -
popping in to make sure everyone is okay...one week 2 of some punishing stuff at work, lots of travel, very long days...no fun!
I'm 8 weeks out from stage 2 and still compressing a bit (although with something more akin to spanx at this point) cause of all the travelling, but I stopped around the clock compression at around 6.5 weeks. My guideline was to keep doing it when it felt better to be compressed as the numbness after stage 2 can be a bit unsettling. I asked Dr. D on his site about the length of time and this was his reply, verbatim:
"2 weeks is intended as a minimum and wearing for 6 weeks or more as you tolerate
can only help. Most/many lose the will to compress beyond 2 weeks so we are
approaching it from that realization. Certainly no medical reason not to wear
and you will recover faster from the suction if you compress a little longer
rather than a little shorter."So there you go.
Kbodie, sorry to hear things have been tough - been thinking about you! I will say I had my hyst 8 weeks ago by Dr. V in NOLA - no complications, no menopause issues. I had one hot flash about 5 days after surgery and that was it. The only issue I have is fatigue but that is probably because i went back to work too soon and it's been crazy at work. Working with a hormone specialist on HRT and it's working out really well - all bioidenticals and not just the sex hormones but thyroid and adrenals as needed as they all get out of wack after all this stress/surgery. Remember the BM itself will mess with your natural hormones and be gentle with yourself...wishing you calm in making your decisions...
0 -
KBodie and Betsy, wanted to share my hysterectomy/oopherectomy experience. Several years before BC (and finding out I was BRCA pos) I discovered I was positive for a different gene mutation called HNPCC. This causes a very high risk fo colon and uterine CA and a somewhat increased risk for ovarian CA. Right around the same time I had spotting and an endometrial biopsy showed higher level abnormal cells, so there's was no question I needed to get my uterus out. But I was SO conflicted about the ovary part. For one thing I was very very sad about even having my uterus removed and this added to it. Also I was completely freaked out out the sudden surgical menopause. But I went ahead with both and interestingly it turned out I had few bothersome symptoms. Obviously this varies a lot from person to person, but I wanted to tell you how it was for me. Plus I think I did all my organ loss grieving pre-surgery and really felt fine about it afterwards.
0 -
I'm leaving...on a jet plane....packing up, departing in 5 hours. It will be a long and exhausting day but I am excited! Best wishes to those in surgery and recovering this week and all of you in various stages of recovery at home. It is not an exaggeration to say you have saved my mental health. And I will probably only be off for a day or two because I can't stay away!
0 -
Safe travels KBodie!
0 -
KBodie,
Have an easy trip home! (I used a wheel chair at the airport and going through security was a breeze.)
0 -
KBodie - Safe travels! Hope it's a smooth trip home!
Dana - Did you really sleep in the dang thing for 6 1/2 weeks???!!! I am going to continue wearing mine for a couple more weeks, (I'm a month out as of yesterday), but I stopped sleeping in it at 2 1/2 - that's all I could take . . .
0 -
Thank girls! I got through the surgery just fine! I am sitting in the hospital room right now - Just very sleepy and sore
. The best part is....NO drains this time - WooHoo!! Still have to wear the girdle for a couple of weeks though. I get my nipple tattooed tomorrow - I am excited about that.
Too bad I won't be here next week to get the tat because Celeste said there is a different tat artist coming in from Maryland that is 'very. very good' (her words) 0 -
Yay Christie! I saw your post on FB which reminded me I better come over here! Glad you are up and about and cheery already! The successive surgeries (if any) are so much easier than 1 and 2.
Lisa645 had her stage 1 today. Let us know if you see her? Not sure if you're both in the same hospital...
Thinking of you Lisa!!
Jerusha, I liked the Marena that went almost to knees, and up to under breasts, though the pic online doesn't appear that it's going up that high. A nice thick band on the top. No zipps! I can't remember about the sizing, but I think I went by what they post online for sizes, and it worked for me.
0 -
Nordy, screw the DOMs feelings! LOL!!!
0 -
Thank you Spring!
I will need to look at Lisa avatar pic to see if I recognize her. There was only one other patient in the clinic yesterday for pre-op appt when I was there. So far, I haven't seen any other patients.
0 -
ccbaby - how awesome - no drains! I hope I am just as lucky with my next surgery. Good luck with the tats!
0 -
Thank you!
0 -
The new tat artist is Vinnie Meyers... Luckily he is only about a 3 hour car ride from me, so when its time, I will drive down to see him!!! Dr D said that women were talking about him at the Center, so he research his work, invited him down for a visit and the rest is history... I had researched each of them independently and knew I'd use Vinne a long time ago... so it was so funny when I heard he was coming on board in NOLA... The best migrate to each other!!
0 -
haha . . . I spoke with Vinnie a few days ago - had a question about the tattoo'ing. And he loves NOLA as much as we do! No surprise there!
0 -
Congrats to KBodie on going home! And on CCBaby for almost being all done and feeling gooooood!
0 -
KBodie: Safe travels. It'll be so great to be at home!
CCBaby: Seems like everything went well; I'm happy for you! Can't wait to say I'm done too but still 4 weeks post op from Stage I.
Running: How are you doing? We're 4.5 weeks post op! Seems like weeks ago that we had surgery. Hope you're healing well. Can't wait until all the wounds are healed.
0 -
Wanted to post a picture, but the instructions seem very vague to me. Any help? And, FYI -- my name is Maggie. 63 and diagnosed almost one year exactly after my daughter. She had triple neg, chemo, lumpectomy and rads and so far (thank God) is doing well. Someone suggested that we write a book as mother and daughter. I thought (though I am sure we would get in REAL trouble with the Tolkein estate!) that the title should be: "There And Back Again -- This Ain't No Hobbit's Tale!" LOL!!
Been in my DOM now for almost 6 weeks. Still have [expletive deleted] hip drain that is still productive. I don't think the DOM is as tight as it was after surgery -- 'course, I have lost 14 pounds! Will wear it as prescribed -- until drain is out and for 2 weeks after that -- I figure it is a small price to pay to be, as my spouse says, a "no artificial ingredients added woman!"
Glad to hear others are doing so well. Looking forward to Stage 2 in December even though it will be a very short window of no drains, DOM and restrictions!
0 -
Got my tattoo today with Don...he is very personable!!
0
Wanted to post a picture, but the instructions seem very vague to me. Any help? And, FYI -- my name is Maggie. 63 and diagnosed almost one year exactly after my daughter. She had triple neg, chemo, lumpectomy and rads and so far (thank God) is doing well. Someone suggested that we write a book as mother and daughter. I thought (though I am sure we would get in REAL trouble with the Tolkein estate!) that the title should be: "There And Back Again -- This Ain't No Hobbit's Tale!" LOL!!