NOLA in September?
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Thanks SandyinParadise! I feel very blessed to be able to go to NOLA. I saw the beautifulness of their talents at the F.O.R.C.E. conference in Orlando this year. I grieved the loss of my breast and the initial work done on me when I saw the difference between what was done to me and what the NOLA doctors are doing to make women feel whole again! So looking forward to being normal again.
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Betsy I am here! Will come and see you ... Have not read posts for days but will tonight and see you soon, unbelievable
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I will be in NOLA on 8/29 for sure for a skin graft to cover my open wound...this is now definite however i will be at Fairway for this one since my insurance wont cover St. Charles. I will be in St. Charles for the flap. In the stages of booking flights and hope lodge or hotel..not sure yet. I have to fly in the friday before because Fairway requires you to do pre-op the day before IN PERSON...well this doesn't include weekends. Dr. M plans on me being there until possibly the 5th. I so sad as my kids will be just starting school and I won't be there;(
Anyone go to Fairway?
Michelle
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Momma2, I will add your date. You are in the best of hands. Don't worry about Fiarway - everybody who goes there loves it. I've never heard a bad thing.
Betsy, wow. there you go back to NOLA. Good thoughts your way.... pls keep in touch and let us know what's up. Sorry you had to go through all this. Soon it's going to turn the corner! I added your Thurs surgery to the list above.
VINNIE! OMG!!! You are SO doing my tattoos next time they need to be done. I am in Raleigh NC. Is your road trip planning to come this way at all? Tell me when you are close and I will come to you! Those were beautiful tats and you are so right, the alost flat side really popped with the Tat. I have one "real" nipple that has a lot of natural pop and a recon side that is a little nub. I am sure you could do magic, looking at that pic! Thanks for posting here. (also sent you a PM).
Nordy, we should have our Tats redone together!!!0 -
Michelle, great news you are going to NOLA for all your surgeries. The rest will fall into place.
Vinnie! What a delight to hear you are travelling! I just may get to have the best tattoos on the best recon breasts! I'm emailing you. Will you be going to NOLA periodically?
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cider8.... i don't know? ... I am visiting them next week ... I just want to meet their wonderful docs and staff and get to know them. I guess I will know more soon. Either way I want to try to hit a few cities each year and do as many cool nip tats as I can...lol. I just have to figure it all out.... sounds like loads of fun though...... maybe you can be the first one I do on the road trip in NO....:)
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Michelle,
I had my surgery at Fairway...it is a surgical center....... (for insurance reasons as well.) Most of the surgery is outpatient, so when you stay (I had delayed uni-stacked DIEP) you are often the only person there or one of two...and the care is wonderful. There are no "sick" folks because it is not a hospital so infection risk is almost non-existent. Very highly rated place. Food was not great but that was the only thing that I found any issue with....
It is in Covington not New Orleans...there is a Marriott nearby that was decent and several places to eat or get take out. I went to the St. Charles Center in NOLA for pre-op and post-op...about 45 minutes drive. We rented a car. I did not have the "perks" of limo driver etc. because of my insurance...but I did have the superb skills of Dr. Massey and Dr. Sullivan and that is what mattered to me. I have had no complications and am scheduled for stage 2 in Sept.- also at Fairway. I arrive the 31st, pre-op the 1st and surgery the 2nd. Discharge the 3rd and home the 4th is the plan.
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Sounds like things are hopping at SCSH. Hope you recuperators are recuperating , and the preparers have peace of mind and easy surgeries ahead. Betsy, they'll get you fixed right up. Denouement, eager to hear what you think of your results.
Vinnie : thanks for popping in here. So good that you are making a connection with the Center. Now it's really the "A" team!
Ladies who have had their stage 2 lipo: I have a question. As time has gone by, have you found that any weight put on is going to "new" places. We all hope to not add any new fat, but...well, it sometimes happens.
Once your fat cells are sucked out, you can't get fat in those same places...so where does your body put it???? This is something I am really concerned about. I feel like I'm used to, and somewhat resigned to, the places where I have always had some fat and maybe I'd rather keep that than chance something entirely new. Am I being too nutty about this?
Also wondering if anyone has had any bad effects/consequences or any complications from lipo -- other than the transient discomfort? (and having to wear compression stuff). Trying to decide how far to go with my Stage 2, considering that my tummy is STILL swollen and uncomfortable 14 weeks after my DIEP.0 -
Hey Ladies, just checking at the 12 hour mark since leaving the recovery room for my stage 2/hysterectomy. So far so good! My only issue has been extreme fatigue but I'm sure that is a combination of the anesthesia and not really having a decent night's sleep since I found out I was BRCA1 positive in January. It's strange because I was WIDE awake after my stage 1, talking up a
storm (just like you Theresa!)Here are the details I have thus far: My surgery started at 6:30. First they flipped me over onto my belly Dr. D could do some booty lipo. Then they flipped me onto my back and Dr. Von Almen
(who just returned from vacation in Nicaragua and was sporting a tan and beard!) performed my laparoscopic supra-cervical hysterectomy. He took my took ovaries, tubes and my uterus. We had a plan that if he opened me up and saw anything suspicious that he would just take the tubes and the ovaries and leave the uterus for a GYN Onc to do at a later date. This is because in order to keep the cervix and take the uterus out laparoscopically they need to morcellate the uterus (which is grinding it up into very small pieces to come out of the abdominal incision). Of course
pathology is done on that but it's hard to pin point exactly what the situation was if that tissue is not taken out intact and then sectioned. And I really wanted to keep my cervix so taking the uterus out vaginally was a last resort.This is where things get unclear for me. My husband spoke to Dr. V after his work was done (about 2.5 hours) and was told that there was something up with my uterus, not cancerous, but something. Being a guy with very little knowledge of lady plumbing my husband was very fuzzy on the details. I figure I will ask Dr. V when he checks in on me tomorrow. What it sounds like was that a portion of my uterus grew a little mini uterus on my right side. Evidently not unheard of but also not common. Regardless he took it out with ovaries and tubes and sent it all away for serial sectioning and pathology - fingers crossed! I've been having low right quandrant pain on and off for 3 years so it a very good chance that this was causing it.
After that was done Dr. D came back and did the breast revision and more lipo. Not sure the order but he did a little around my knees, inner and outer things, love handles, etc. A little bit of refining just about everywhere. Then he lifted my breasts a bit and shaped my nipples symmetrically (they have always been different sizes - from what I can see they look great already!) He also injected fat into both of my breasts to give them a more round shape and even them out. He revised my dog ears and injected something (can't remember the name but I will out) along my abdominal scar to help break up the scar tissue and help the redness go down. That's all I know so far but I suspect he will find out later when he comes in to check on me.
Dr. D told me his portion of the surgery would be 2 hours but it wound up being more like 3 hours, not sure why but I will ask him when he checks in on me. Oh and by the way, he was wearing
navy blue and beige sneakers!After 5.5 hours in surgery they took me to the recovery room a little before noon and I was up almost immediately but very groggy and very cold. Strange because I don't even remember the recovery room at all from stage 1 at all. They keep me there until almost 3 pm so they
could keep me under the warming blankets on a bit longer.Back at the room I was drifting in and out of sleep - my man stayed until about 7 when I sent him back to the hotel to get some sleep himself. This is the first time I've been able to stay awake for more than 15 minutes at a clip.I had ordered the Cobb salad for dinner but wasn't able to eat it until about 9 pm - but I did it!
So I do have drains, one in each breast but they will come out before I am discharged later today. I'm going to stick around as late as I can this afternoon! I have a girdle which hits under the breast line and goes down the knees - it's not as big or restrictive as I thought it would be but maybe I get a new one later today?
Betsy so sorry to hear about your latest complications and that you have to come back but I'm sure they will fix everything here. When do you get in? I'm in room 205 if you have time to stop by-same goes for Brenda and Rosemary if you are around.
That's all for now - will get more info after I see the docs. Good news is that stage 2 (so far anyway) seems MUCH easier than stage 1. I even did a lap around the hospital last night and would have done more if it wasn't so annoying to drag the IV and catheter around. I had them keep them in overnight so I could rest but I'm getting them out as soon as the morning shift can do it....woohoo-this should be it for me!
Sorry for the long post and for all the rambling! Hopefully this post makes sense
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Hi Dana. I am so glad you are done and everything went so well! I can't believe how energetic and coherent you sound. That is funny about your mini-uterus - last night I heard for the first time from a friend about another women who had a second uterus. The universe is a strange and wondrous thing.
My medical update is that my pre-surgery MRI came back suspicious for DCIS. I had an MRI guided vacuum assisted biopsy in two areas yesterday and should get the results back today or tomorrow. So my planned prophylactic mastectomy due to BRCA status may not be prophylactic after all. I realize that DCIS is a "good" diagnosis as far as a breast cancer diagnosis goes, but having watched my mom die of breast cancer, I have some apprehension about getting the results.0 -
Love you too, Nordy!!!!
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Hey Ladies, here's another update for post op day 1 of my stage 2 DIEP and hysterectomy. So first off, the GYN doctor Vonalmen said that I had a lot of endometriosis attached to my ureter. That's the tube that brings urine from the kidneys to the bladder. He removed as much of it as he could with my uterus but there is still some left as he didn't want to get to close and accidently nick the ureter. Evidently this not uncommon but it's definitely a good thing I chose to have my uterus out as well as this could have led to problems and pain later with my HRT. Dr. V is recommending I go off of estrogen for about 3 months and the endometriosis will clear itself up. I'm on a patch for now and I will wait to get home to talk to my local GYN and hormone specialist before changing anything. I'm 35 so I want to do whatever I can to ease the symptoms of surgical menopause-we'll see.
My nurse last night was Donna and today it was Erin-both were great! I got my IV and my catheter out first thing this morning and started doing laps. I noticed that even though Dr. D did some lipo around my knees the compression garment did not cover that area and my knees and calves blew up like balloons! Laura came in and I showed here and they started hunting for a longer garment that went past the knees. They didn't have one in the right size for me so I got a size smaller and they order 2 more in my size that will come tomorrow. I took a shower on my own with no issue but man, getting that garment on was NO fun-now I know what it feels like to be a sausage!
I just got another dose of Percocet and the car is coming to get us to bring us back to the hotel in about 30 minutes. I'm leaving with drains today but they will be taken out at my post-op tomorrow-having them just one more day isn't bad at all. My only worry is more showering without help getting the girdle back-it took 3 people to get me into that thing. So I just might un-showered for a
couple of days...we'll see...so far so good though, can't believe how much easier this was than stage 1-hoping for a good path report and smooth sailing from here on out!How's everyone else doing?
~dana
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Dana you move too fast... I was just near monteluone! What time is your pay tomorrow ? Mine is 9.45 ...hoping we can catch up and talk more then , Rosemary
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Well am one week out and as delighted as I am, am getting little anxious about how hard breast has become... Also my diep breast is lot smaller than normal breast..so am hoping stage2 will fix all this ...
Also , since already thinking ahead to stage 2 !!,,am interested in answers to jerushas questions.. I was researching this before... Anybody have any complaints about having lipo as the years roll on??0 -
Betsy -- Hoping (selfishly) that you will still be in NOLA when I come in on the 22nd for pre-op. Will be sure to check for you. Would really like to meet you ... your wisdom and stoicism has really been an inspiration. As my mother used to say (and I sometimes wanted to just slap her though I DDID roll my eyes a lot! LOL!) This too shall pass ... see you in NOLA!!!
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@ louis 13 -- I'm on my way! You take care of Betsy till I get there!
@Michelle -- I will be in ther area ... see if I can get to Fairway. Will be staying in the city until post-op check on 9/29 and then in and out from Thibodaux (right outside the City). Have friends coming in who will want to do some 'tourist' things, so I will be out and about. And am hoping we will attend the House of Blues fund-raiser ... the longer I am in this process, the more I know women are short-changed in information and options ... gonna get in the fight, too!
@bdavis -- Hang in thre! From what I hear about the Center, this is like going back to the 'womb' -- healing SURE to happen!!!
@Vinnie -- we need to talk!!!
@Jerusha -- had lipo when I had a tummy tuck ... no worries there! The fat has accumulated in the same places! LOL! Don't know about a post-DIEP, but, as I added fat, it went back to the "usual" places!
@Dana -- love your posts -- and the sausage anology ... not too far off, I am sure. Had to get Underarmor for the plane ride in (my sister is a PT who specializes in lymphodema, and she is adamant ... no sleeves -- go for the total coverage! Was a who cardio and yoga workout to get it on in the store -- imagine at 5:30 AM when I am readying to go to the airport!). I imagine this is a very close experience! Good that you have a great sense of humor. Am hoping that gets me thru Stage 1!
@Everyone -- sorry for the long post. It has been he-- at work trying to get ready to leave for a month, I seem to be incapable at making decisions about what clothing to bring, and with all of the progress on our B&B hanging ... well, I haven't had much time to catch up! I have to say, after today at work, I am REALLY looking forward to just getting knocked out cold!!! LOL!
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@betsy -- How long are they projecting you to be in NOLA after the surgery? My cousin has a HUGE house just outside of the City and the bedrooms are open! Beautiful, peaceful garden for coffee in the AM with a 700+ yr old live oak in the middle (I AM Celtic, so do believe in the power of the tree dryads!). Have friends coming in to stay with me ... come and be with us rather than a hotel!!! Lemme know. E-mail @ dogwood@netsync.net for personal chat. Girl, we WILL get thru this. Forget hotels!!!0
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Wow celtic... Very generous... I am working one day at a time... They said something about keeping me here at the hospital the whole time... Not sure, but we can certainly entertain the idea!
Dana... You do move fast... I was standing at the nurses station, and just as i asked about you, the nurses said you had just walked past me and onto the elevator.
For those swinging thru, i am in room 216... Not as nice as 208 (my old room) but still nice... Surgery tomorrow at 9am, so i won't be here then... So rosemary... Now you know where i live, for now.0 -
Wow celtic... Very generous... I am working one day at a time... They said something about keeping me here at the hospital the whole time... Not sure, but we can certainly entertain the idea!
Dana... You do move fast... I was standing at the nurses station, and just as i asked about you, the nurses said you had just walked past me and onto the elevator.
For those swinging thru, i am in room 216... Not as nice as 208 (my old room) but still nice... Surgery tomorrow at 9am, so i won't be here then... So rosemary... Now you know where i live, for now.0 -
Dana, I love your detailed report! You know there are lurkers that will benefit greatly from your experience. I met a woman in the infusion room who was BRCA+, just had prophylatic BMX and was there for IV antibiotics. She said the FORCE boards were key for her, but she never posted. She was grateful for all who share! You do sound like you are doing well, really. I'm feeling apprehensive about Stage 2, but I'm also in the middle of feeling crappy from chemo, so I'm not exactly in the best state of mind about tackling another surgery.
My sister has two uterus (uteri?) and two cervix. One uterus and cervix is smaller than the other. When my sister was a teen her doc told her she most likely couldn't carry a baby to term. Crazy doc, telling her that as a teen! She felt like a freak instead of wonderous. My sister has 2 healthy baby boys, both from the larger uterus. She never really knew her details until she got pregnant and had a super doc (literally! Dr Super). Her 2 uterus are connected by a septum, so that part isn't able to expand and grow like the uterus. So that's why she was told she couldn't carry to term. She was a high risk preg because they just didn't know exactly what would happen because the septum was at least a third of the uterus/womb. She carried her babies just fine. They both ended up in the exact same breech position, so she had a c section both times. Simply amazing, really, our reproductive organs! She's my younger sister and now I worry about her since my diagnosis, even though I'm not BRCA positive.
Running, it takes time to absorb a diagnosis of cancer, even just the possibility of it. You are doing the exact right thing right now and have made some great choices for yourself. Waiting is hard, so is not imagining the worst.
Vinnie, good luck with your NOLA doc visit! You'll probably love them as much as we do. I've got ways to go before nipple tattoo. I've got chemo to finish and I might need 2 stage 2s.
Rosemary, write down your questions/concerns for your post op tomorrow. The breast does soften after time and I'm assured it's shaped better at stage 2. I wonder about lipo, too.
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Betsy -- Check in with you if you are still there Monday the 22nd when I am in for pre-ops. We'll work it out, girl. If I can quote Dr. Suess's Horton "I say what I mean and I mean what I say." If they'll let you out, rather than a hotel, we'll come a getcha and you can recuperate in companionable, true homestyle healing comfort! THAT's what NOLA is all about! Pay it forward! I am a true believer in that!
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@Vinne -- I heard at Hopkins that you were THE person they referred women to for tattoos. Think you should gather like-talented artists and start a biz ... too many shysters out there and I am NOT going to trust some PA with henna to make the "one look like the other!" Plus, I like the idea someone posted about not having a 3-D nipple tattoo, but a combo with her own special symbol ... meaningful for us, and grateful to you!
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Dana - thanks so much for the Stage 2 updates. That is next on my horizon and I am paying attention!0
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Celtic.... I will be at the center on the 22nd but leaving at 5:00am tuesday morning, so may not work out... But thank you for the offer
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Betsy, I was once in 216! It's where I had my Stage 1. 205 Stage 2, adn 208 (my fav) 2b. Surgery tomorrow??
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I got an email that made me just start sobbing today, which was my wonderful doc giving me the all-clear on my MRI-guided biopsy. Silly husband asked why I was crying. Men can be such simple creatures! Anyway, I am beyond grateful and relieved, and now even more thankful that I am able to go to NOLA. Cider8, thanks for the kind words and support. I am sorry you are feeling lousy from the chemo.
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Yes surgery at 9
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Betsy! So sorry I missed you--I had asked the nurses earlier (about an hour before I left) and they said you weren't there yet. My post op is tomorrow at 3 pm so maybe I'll pop over to SCSH and see if you are out of surgery and up for a visitor.
Rosemary - seems like your post-op is way earlier than mine--where will you be the rest of the day? Maybe we can meet up elsewhere--I've got nothing to do but waddle around like a sausage all day! Would love to have more time to chat...
jeskachi - let us now how you are doing when you get a chance
Well I'm back at the Monteleone and things are going okay...I'm a bit sore from from the lipo but I think most of my discomfort is from the hyst. Ladies, if you made it past Stage 1, stage 2 is a real cake walk. My breasts look kinds odd and cone-shaped now but everyone says they will settle beautifully. I'm not even remotely as bruised as I was with stage 1 so I think the subligual arnica really helped. My biggest issue right now is my phone decided to stop making or receiving calls--bad timing! Verizon is overnight-ing a new phone to the hotel to me tomorrow, but if anyone is calling me that is why I'm not getting back to you!
And Running, I got your email when we got back to the hotel and I started sobbing too--my husband was looking at me like I'm an alien from another planet but I don't care--such great news--wish I could give you a hug!
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Running: yeah, baby!! Hubs can be clueless. My hubs asked me 'what are you crying about now?' right before going into surgery for my port. I gave him the what for on that. He was great for Stage 1 in NOLA, though.
I'm saying prayers for you Betsy!
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I've been away for 2 days worrying about a possible pulmonary embolis. I was awakened with sharp chest pain really early Monday morning and then in the afternoon started having sharp chest pains with deep inspiration. I had a night of self medicating and worrying and finally called the center early yesterday morning. I had a 14 hour odyssey that spanned 3 hospitals. Finally got the last test result this morning and everyone seems comfortable that I don't have a DVT or pulmonary embolism. No one can tell me why I have chest pain with deep breaths. But I'm good with this as long as it's not a PE.
JERUSHA - Yes, a car picked me up and took me to the center today for MLD. It was heaven. I have appointments tomorrow and Friday afternoon too. Great idea about cutting the boobs out of a compression cami. I didn't bring any with me to NOLA but I'm heading home on Saturday and I'm going to try that. Thanks!
Betsy - I'll be finished with MLD around 2:30pm tomorrow. I'm not sure if you'll be up for visitors but I'll ask your nurse to check in with you. I'll be back again on Friday. It would be great to meet. I'll be thinking of you in the morning. I think that this surgery will make your recovery much quicker!
Rosemary - I'm 2 1/2 weeks out and my breasts have started to soften. It's a great feeling!
Vinnie - I'm from MD and definitely planned to see you in Baltimore for my tattoos. It won't be until 2012. Everyone says that your the best!
Denouement - Great to hear that you're doing well after Stage II. Maybe we'll see each other tomorrow too!
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