NOLA in September?
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Just checking in before heading for bed - tired but healing. Spring, I am home, made it here Friday afternoon. What a trek . . . Will write more tomorrow or later in the week, but just want to say hang in there all, you are all in my thoughts and prayers. And for those of you coming up, I just want to say that I could not be any happier with my decision, and am so glad I did it. And I am pretty darn proud that I did. Can hardly wait for Stage 2 and 3!
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LeslieT, my husband and I stayed at the Monteleone the 2 nights before the hospital. The room was small but very clean and very nice. Check with Katie at the center for rates. They have some arrangements with places for special rates. After surgery, at the Homewood, there was a special rate for patients from SCSH. I was having trouble reaching the person I needed to talk to about it and was in kind of a time crunch and Katie just took care of it for me.
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Hi LeslieT - we've stayed at both the Bienville and Ritz Carlton when we were in town for the first consult and then for Stage 1. So far the RC was much better but the Bienville had an old world charm to it and it was right in the French Quarter. The RC was around the corner. For stage 2 we're sampling the Monteleone - which, from personal experience, has a great lobby. We'll be at the Homewood Suites based on recommendations on this thread post-surgery. The Center gets great rates.
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Cider 8--I sent you a private message--hope you are doing o.k.!
Hello to all--I haven't been on the boards in forever which I guess is a really good sign. I hope folks are recovering well. Something that has helped me immensely is intensive myofascial release work--I never would have felt normal again with as much scar tissue as I have if I hadn't invested the time and energy in this...anyway the girls look great and I'm off on a cruise in a few hours to celebrate my third cancerversary! God bless you all--you are a bunch of amazing wiomen!
Sarabhealed
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Jerusha thanks for the list....and a big'ole thanks to everyone lending their support as I prepare for the big STAGE this week. Feels weird as I have be trying to get to NOLA for over 2 years. Excited and feel a little nervous but I know that God will handle everything. I can't wait!! Glad to see all those from the past few weeks made it home safely. Are you guys sleeping in your bed?
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Jerusha, so true about the pads falling to the floor!! haha I've gotten very good using my toes to pick them up and put into trash!!
Rogam, I am sleeping in my bed, but 1st night was awful as I couldn't get comfy. Now my DH has used couch cushions and many different size pillows to make me what feels like a lazy boy , in my bed . The worst part for me was 1st night in hotel following surgery. I was so used to the hospital bed and being able to push a button to move myself. So at the hotel my DH used couch cushions and put them under the mattress to raise my head, wasn't perfect ,but def helped. (we stayed at homewood suites after and they have little living room)
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Its been months since I have been on. Got a pm so decided I need to stop in here too.
Lots of new Ladies here. Im sorry I have not been here to add support. Im glad there are others that are helping you along the way.
I am always thinking of the Ladies heading to NOLA though
Anyone can pm if you ever want to ask me something.
I lost my wonderful Dog Deja in Early March to Cancer (my Avatar)
We had to put her to sleep 4 days before she turned 11. She was so great during my dx & all my surgeries. I miss her SO much. I decided that I was not going to get another dog.
That lasted 2 days I think. I then realized I have to have a dog in my life. So I searched day & night for my New Puppy. Miss Trixie Doodle. Trixie means Bringer of Joy : )
She has been here 2 months (she turns 4 months old today)
I will see if I can get a Picture to post....
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Cider- I forgot to say that I too had terrible BO after surgery. I had it after every surgery (except my heart surgery- when I didnt have Anesthesia) I only had a node removed from one side. but both underarms stunk ;o
I does go away...Although several times it lasted for 6 months!
Washing didnt seem to help. I ended up using My Noxzema face pads to clean with.
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Rogam, I was worried about the transition from hospital bed to hotel (and home) but I had no problem at all. We had 2 Q-size beds in our suite at Homewood and each came with about 6 pillows, so I did not even need to ask for extra . The mattress is super comfy there and the pillows were very soft also. I put about 6 or 7 behind my back / head so I was "reclining" at about 45 degrees, and 2 under my knees so they were bent up. I put one under each arm to keep my elbows from getting sore . (Left exactly one for my DH!). I am doing the very same thing at home and it has been perfect. I am sleeping great! I think you mentioned that you were going home to someone else's house after surgery . If they do not have a ton of pillows, maybe stock up at Target.
Be sure to stay on your pain med schedule thru out the night - especially at first. Set alarms and be very organized about it to stay ahead of your pain. I also had a problem the first night with getting all the stuff hanging off of my body arranged ... not tugging, tangled or rubbing. When you are drugged up you kind of let things bug you for a while before your brain tries to figure out what is wrong . My drain pouch belt was rubbing on the drain site and I knew something felt bad, but it took me a while to process it and I woke up very distressed.
Thank goodness you are finally getting to NOLA! Not a minute too soon! You will be so glad you did it !! Good luck to NoWords, Ref and Lesliet. Once the ball gets rolling, you just sit back and SCSH and the Center keep everything on track. Before you know it, you will be home in YOUR own bed, getting well!0 -
Dejaboo, so sorry for your loss. I too lost my cockerspainel Kramer (big seinfeld fan) 2yrs ago to cancer as well (imhb) he fought for almost a year . I too was never going to replace my best friend, well I did a little better than you, like a month. My new best friend is Lainey (ie elaine haha) and the way we figured it , she was born about same time as Kramer passed. So I always think she was a gift from him and we always remember him on her birthday! Trixie is soooo cute and sure she will help fill the hole left from the loss of Deja0
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Just wondering how long until your last drain out? I know there are a few girls ahead of me . I have the 2 in my hips or groin area and was told by Laura that to remove them I have to have 50cc or less for 2 days in a row, at which time I can remove 1 and a few days later remove the other. I'm at 65 for the past 2 days and can't take these damn things much longer!!!! sorry needed to vent haha
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I had my hip drains for 6 weeks I think? It just never did get that low, I think around 40-45 is where it stayed. Finally Laura said to pull it out and I had no issues. Patience, I know they are MISERABLE, but so much better than the alternative!
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I am full of emotions )"okay tears" )right now as I prepare to head over to NOLA tomorrow. I can tell that that without this board I would not have known about the center. Thanks so much for all of your support for it has truly been priceless.
I am excited yet nervous. This is different than all the cancer treatment stuff--heck that had to happen. This comes after my life seems normal again minus the boobs.
Thanks Ladies for all the tips, updates and support..ttyall2morrow##
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Thanks everyone for comments about my issues! I figured I couldn't be the only one with the BO thing.
I think I used my last percocet last night. I hadn't used any during the day, but used it at night and the itching intensified. So now I'm going to see if tylenol does it for my breast pain.
Thank you, Kathryn, regarding the psychological component. We do have a different view having mastectomies at NOLA to start our journeys.
Jershua, I didn't get those stretchy boy panties! I didn't have any panties for the first couple days, then I wore my own after my first shower. They didn't have me start with the pads until just before I left. It would have been nice to use the disposable panties instead of getting my own yucked up. I, too, got used to picking up those pads with my toes when they fell down!
Dejaboo, so sorry to hear about your loss. I still my my cat I put down over a year ago. She was my napping buddy; we'd sleep back to back. Your new puppy is beautiful! I'm also finding regular washing of my pits is not enough. The noxema pads working is interesting.
I guess I'm on day 14. I've been sleeping fine in my bed. I never did use the recliner, though the recliner is great to sit in during the day, as it's less pressure on my bum. I stayed in a rental home after the hospital. I slept on a futon and had lots of pillows to make a nest. I propped up my head, my knees and I had pillows under both arms. I couldn't get out of bed by myself; my mom held out a bent arm and I used her arm to pull myself up. The very last morning I got out by myself! I haven't needed help getting out of bed at home. I still sleep with pillows under my arms, knees and head, but not as much as when I was still in NOLA. The pillows keep me from wanting to roll to my side.
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bddavis,
I also had the stack flaps. My surgery was 11 hours long. I had my Stage 1 at the end of Sept. 2010. It was definitly a major surgery with a long recovery but, I am so glad that I did it. I had implants that caused me pain for 2 years. I had no real complications from the surgery to speak of although at the time I sure was in contact with Dr. D's office a lot. They did a wonderful job taking care of me from afar once I returned home. The hardest part were the drains. I hate them and I came out of surgery with 6 drains and 4 pain balls. My hip drains remained with me for weeks. I tried to return to work at 6 weeks but just did not have the energy. I could have if absolutely necessary but, my boss did not push me. I did come back at 8 with a reclining office chair that when I needed I just took a break at my desk..I still do that at times in the afternoons and use my surgery as my excuse.:)
My body is healing nicely and I had Stage 2 in December. My husband loves my new slim shape. I love going shopping now more than ever. My scars are getting lighter everyday. I do need some filling in on the top of my BC side because of my mastectomy but I really could go the rest of my life and be alright with it as is.
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You all are doing so great!
Pam, Trixie is so cute and thats the BEST picture I've seen of her!! (and I've seen a lot!
)Rogam!!! Thinking of you!! You will do great! Congratulations on getting there after 2 years! That is a long journey to wholeness!
Amy!! You made it Hoooooooooome!!!! I am so in awe of you, all you went through and you are saying you have no regrets (jiggly boobies make up for so much, don't they!!! ha!) and can't wait for Stages 2 and 3 !! amazing!!!
Gotta run, just checking in!!
Spring.
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Dawn, hang in there re. the drains. But I know what you mean. I have just the one left in my groin, and it is miserable. My husband keeps talking about it coming out, and he is more obsessed with that than I am, I think. Dr D told me 20 cc or less for 2 days in a row - I am hovering at around 24, 28 or so, I think. So I guess it will be a while. As miserable as it is, I just keep telling myself that it has a job to do. Has the bleeding subsided from when you pulled the drain the other evening?
So, is anyone DOING anything? I mean other than denounement, who is a wonder woman, I think, but also is 15 or so years younger than me. I just feel like I am doing a whole lot of nothing. I tell myself that it is ok, I have earned it, but still . . . The only thing I got accomplished yesterday was sending out one card. Today I have taken a short slow walk, a very slow shower (oh, how I cannot wait for a real shower where the water beats down on me and I just say "ahhhh") and made 1 phone call. Thank goodness I have no responsibilities right now or we would be sunk! I just feel so non-productive though . . .
Also, what are your sore spots? I mean with this surgery, not like hubby leaving his dirty underwear on the bathroom floor, etc. My belly incision is quite sore, and then I have one small area on my upper ab that feels sore. I wonder if it is where the drain begins? Then, my breasts feel in some spots as if someone punched them hard and they are bruised. Sound about right? On top of everything else, I had an allergic reaction to the doppler wires where they were laid across my chest, and that has improved mucho with some hydrocotisone cream, but it is still a little tender.
Re. our pet-children - I lost my beloved black kitty, Jasmine (Minnie) a year ago in June, had to put her down due to kidney failure. She was 1 month shy of 18 years old, and except for the last few weeks of her life, she was pretty healthy and lived a very happy cat-life. (She broke a leg mid-April and never really returned to good health, and then her kidney failed somewhat suddenly). I still miss her so much, though I know she would be tyring to jump up on my tummy or boobs to snuggle, and that would not be a good thing. She is buried in her little garden, under a butterfly bush where she used to laze around, and I have a pretty stone marker with her name on it. Husband is not ready for another pet yet, our last child went off to college last August, and hubby likes being footloose and fancy-free. I'm not so sure . . .
Oh, I don't know if I posted this or not, but . . . my daughter gives me a little Mary Englebreight calendar each year for Christmas, you know, the kind you tear off the page each day. And there is a cute saying and illustration for each day. Well, the day of my surgery reads " There are no shortcuts to anywhere worth going". Let us please all remember this ladies . . . One of the other days that week reads "We don't care how they do it in New York." Thought that was pretty appropriate for NOLA! NOLA rocks!
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kaitsmom--where were your drains placed, exactly? I thought drains were placed near the hipbone, for both DIEP and SGAP. A drain tube in the groin area sounds really awkward and uncomfortable. How many of you had drains placed there?
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I had 2 breast drains and 2 placed in the groin, right about where my underwear line would be, except I am wearing boy shorts style undies. I am not sure why they were there as opposed to hip, I think it is from wherever they take the most fat, and my fat was really lower abdomen. I think everybody is different, and the docs all do different things as well. And yes, awkward and uncomfortable is about right. Wouldn't have been my first choice of spots . . . but I'm dealing with it . . .
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I was same as Amy..2 breast drains and 2 in groin..basically where your torso meets your legs (hidden below bikini underwear) but rather annoying when using the bathroom
Amy...I too feel like I've been doing nothing..that's why I've been on boards all day lol..I got a call from Laura from center and Dr. D not only wants 50 or lower for 2 days but also to be straw colored not red....ugh..my husband says the same thing.."there doing there job" and my breast drain did continue to leak for a day and this morning it looks like it closed!! baby steps I guess..I wanted to ask if you have numbness under your arm (did you have nodes taken? i forgot) but it seems like alot worse than when I had my snb in april. I hope it goes away..It is very tight as well, I guess I should ask if there are any exercises I should do ..
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Dsnydawn... Doin' nothing! Me too. I feel so lazy, but pleasantly so! Can barely get myself to go take a walk. In fact, every other day is the best I've done with walking. Interspersed with a shower day !! I came home with one hip drain. Surprisingly, it is really not bothering me at all. I have an appointment to have it pulled tomorrow, but I actually don't even remember the parameters. Guess I will call the clinic in the AM. I'm pretty sure they said less than 50 ml, but did not mention straw color. Yipes. That would be a while, I think. Does anyone else have issues with "early satiety", meaning - feeling full very fast? I feel like I've had stomach stapling . I can only eat a small amount at a time. I realize that this is not actually a bad thing... but I miss my former "capacity"! I'm making up for quantity with quality, however...when I do eat something, I have some chocolate milkshake!!! Haha
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Jerusha, I felt the exact same way for a while, can't remember if it was a couple weeks or a month etc... It will go away, but you're right, it's not really a bad thing
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Hey Dawn, I did not have nodes removed with this surgery since this was a reconstruction of my reconstruction (implants removed that have been in since 2007). In April '07 when I had my bilateral mastecomies, I had 2 nodes removed from my left side, and 1 removed from my right. Had lots of ongoing numbness since then, but have not noticed any additional numbness from this particular surgery. Yes, when you are healed you will want to ask about exercises. I had a frozen shoulder after my MX and the exercises helped alot.
50 cc or lower! I wonder why they told me 20 cc. And I sort of forgot all about the straw-color.. Mine is definitely not there yet.
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Kaitsmom, When I left SCSH I was given a pamphlet with typical post MX exercises which include a lot of reaching up over the head and ROM stuff. I told the nurse that I was under the impression that we were not to be doing those kind of exercises????
But what exactly ARE we supposed to be doing, and what is the time frame?0 -
The only limitation I remember being given is the lifting, no lifting over 10 pounds. I did what I felt I could, and probably pushed myself. I know after my MX I didn't walk up right and had a hard time standing up straight, and was so nervous to lift my arms, ended up going to a lot of PT to get those muscles relaxed and stretched out again. I don't really see how you're going to hurt anything.
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hmmm I do not think I was given any exercises to do . . . and I am under the same impression as you, that I am not supposed to be doing that kind of stuff , though Dr D did say it was ok that I raise my hands over my head to dry my hair, etc. That was the only thing I asked about, since I had read on here that you are not supposed to raise your hands above your head . . . . Well I am too lazy to even do that kind of exercise anyway right now haha
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Haha. Kaitsmom , that's the only thing I asked about, too. Hmmm. Guess we won't be running into each other at the gym!!
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Rogam, let the tears flow! You will love each person you encounter in NOLA. For me, NOLA is a major part of my cancer treatment, so my feelings are a bit different than yours. I do have to say I feel more sensual after my surgery. I did not expect it, as I haven't had to go breast free. To have the skin of my lower belly lifted and to then have my breasts lifted has made me love my body more. My non-cancer breast is beautifully shaped already but my cancer side is not. At first I was horrified by the scars on the cancer side, but I'm getting used to it and accepting it as part of my journey. I have to wait until after chemo for stage 2.
Dawn, I have one hip drain, output ranging from 55 yesterday to 67 the day before. Having just one isn't so bad. I am certainly ready for it to go.
An update--I wrote the above a few hours ago, right before I lost power. I was watching the on the news the devastation that happened in Joplin MO and a storm blew out my power. It was still out this evening so my husband decided I should go to my mom's house. He took the girls back home with him so they could go to school in the morning. I really just wanted to stay home. Fortunately my sister lives 2 doors up from my parents. So I'm hanging out on the screened in porch with my nephews. Not bad.
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It sounds like everyone is doing great. I'm so happy for you all.
I had hip flaps and 2 nodes taken and was told to lift my arms as much as I wanted - movement was good for them. Of course, nothing over 10 pounds (not that there was any danger of that). I had some soreness but not much at all.
As for drains - the hip drain requirements for pulling are different than the stomach drains. I think DIEP is under 20cc for 2 days in a row and hip is under 30. Of course I did wait until mine were about 25 2 days in a row and I still ended up with seromas on each hip. That's all gone now but I did have to have mine drained about 3 times. Honestly I preferred that to having the drains in. I don't think mine were groin drains - they definitely came out near my hip on both side. I had one for about 4 1/2 weeks and the other for about 5 1/2. Pure elation when you get the second one out! Colorwise I think I would have called mine a sort of tea color.
Good luck and may you all have low output soon!
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dejaboo - so sorry about your dog. Mine died about 2 years ago (from cancer) and we got one about 2 months before she died. I think it perked her up a little but next time I would not do it that way at all. I needed more time to mourn. The new puppy is adorable. What kind is it?
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