NOLA in September?
Comments
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It's possible some of the chest tightness is developing scar tissue. I felt really tight and like my breasts were sort of nailed on until after I started physical therapy and the PT worked on releasing adhesions and softening up the scars. She was working on me just the other day and the adhesions being released were so loud we could both hear it like popping bubble wrap! It didn't hurt, but it was weird to hear it. My chest has felt a little more normal since then.
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Im only 2 weeks out and it has always felt tight and sore, but after yesterday it feels so much worse. When can you start PT? My body produced severe adhesions and they are really thick. I know it's too soon now, but just curious?
Also, the skin slothing off my breast is kinda freaking me out...0 -
Chelle - I've had very dry skin on my breasts. Sort of like dandruff, lots of small flakes. Is that what yours is like? Jeanine said it happens from the effects of anesthesia (though I don't quite understand how). SHe said its fine to use lotion.
Thank you, Eva! You've described exactly the indentation issue. It's so weird! Even a seam from the bra leaves a big indent. Good to know this too shall pass.
How do you know if you are producing lots of adhesions? I have no idea if that's happening to me!0 -
Chelle - I've had very dry skin on my breasts. Sort of like dandruff, lots of small flakes. Is that what yours is like? Jeanine said it happens from the effects of anesthesia (though I don't quite understand how). SHe said its fine to use lotion.
Thank you, Eva! You've described exactly the indentation issue. It's so weird! Even a seam from the bra leaves a big indent. Good to know this too shall pass.
How do you know if you are producing lots of adhesions? I have no idea if that's happening to me!0 -
I had tons of the flaky dandruff style breast skin and also thin peeling - like a sunburn peeling. I don't know if yours is like that or not. I'd worry if it seemed like any thick parts were sloughing off exposing raw tissue underneath, but the thin flaky peely stuff just took care of itself after a while.
They told me four weeks to PT. You need to give the wounds time to heal before you can start manipulating them. Both times I started PT at three weeks and six days. I was so anxious to get to it too! The good news is once I did start, things improved really quickly. I know it's hard to be patient.
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This is actually small layers of skin coming off that caused bleeding. Laura said it was superficial & it's due to some thin skin areas. My hubby looked at just a little bit ago and says it looks better today and I was careful with it in the shower.
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Ah, that sounds like more than I experienced. Another reason to hold off on PT, Chelle. I wouldn't think you'd want to put stress on such delicate skin before it heals enough. It will get better though!
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Chelle.. I had skin issues.. I had what Eva had, but I also had bleeding raw and blistered skin... If you use ointment, be sure not to get the ointment on the incision...I guess I did, and my incision didn't heal.. then the glue came off and the incision opened...But my skin was nasty.
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Betsy, Laura was pretty specific about that. I have to use neosporin on the area(s) that the skin is coming off but I also have a spot on the incision that opened a little and she said to use Betadine on that. I guess that's why she was so specific on what to put where.
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Hi everyone, I got released from the hospital a day early. It's kind of bittersweet but I know I'll get more sleep.
Spring, yes I have joined the double flappers. Dr. Massey was pleased with everything.
Amy, hope you are feeling better each day. It was great meeting you and your husband for dinner.
I am really not sure what is causing all of the itching. I am unable to wear the binder. We tried a bunch of different things....even discussed the detergent that the linens get washed in. Last time it was a nasty allergic reaction to the antibiotic. Dr. M said I would be fine without it. I think I am a little more swollen this way.
Just had Sushi and I think it's time for a cleanup and nap. Hugs to all of you for all of your support.
Cascader, I will be going to Charleston in 3 months for my Stage 2. Have you started planning that? That's providing everything goes well.
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Great to hear from you!!!
I had horrible itching too in the hospital and the only thing that worked was only available by injection and I can't remember the name of it, but they tried everything and this worked.
Sending you healing vibes and hugs!!! Hope you get some rest :-)
Chelle0 -
I had terrible itching and skin slothing off (is that a word?) from surgical tape. I found out I am allergic to surgical tape. Surgical glue is fine, but NO TAPE!!! So they wrote it on my record and I would remind everyone all the time NO SURGICAL TAPE!! I also found out I am alergic to the anti-neusea patch they put on you (Scopalomine, something like this). It made me have intense vertigo for a couple days after surgery. So I also avoided that in all supsequent surgeries. Dr. Traeye (spelling?) finally found an anti nausea drug that did not give me vertigo. Dulauded, something like this.
It's a journey!
About constipation. I took Miralax 3 days prior to every surgery after the first when I got all messed up!! Then I'd just keep it up until everything was regular, then slowly back off. There is nothing worse than being terribly constipated after surgery! ugh!
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I just got to nola & have pre-op appts tomorrow. I'm so excited to soon have questions about sloughing skin, indentations, and teeth in my drain! Holy cow, what have I signed up for??? :-) It's great that you ladies are around to answer questions for the newbies!
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LAstar, my daughter is in Pendleton OR with Americorps. Good luck with everything!!! Let us know what you find out...
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Downey- glad you were released early, that is great! I will wait 6 months for stage 2. , recommendation by dr Kline because oft radiated skin. So hoping for 1st week in December.
Jenlee- I keep doing the same thing in my sleep, lifting or folding my arm across my chest. I need a arm sling!
Ksue- I packed too much also, have needed very little.0 -
Hi LAstar, Welcome to Nola. Let us know what is going on with you after your consult
Spring, I already new about my tape allergy...found out about that after my dbl mx. I seem to be adding to the list.
Chelle, I also had the injections for itching and they helped a bunch.
I am working up to getting a shower since its almost lunch time. I take the Miralax each day due to irritable bowel. I'm still not straightened out with the constipation but at least I don't have that pain. I came to hotel with my pain balls since they still had a lot of medication left in them. Just like everyone else I'll be so happy to lose the drains. Still feel very tight...took a flexeril last night and slept in a coma. It felt great. Hugs to everyone.
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Nordy Thanks so much for your support I miss you. I just met with Dr D and found out that my mammory band broke is why my one breast is not staying in the bra. He is going to fix me up and do alot of lipo. I have been out of the loop but wasnt sure if it was posted somewhere that Glen the one limo's daughter who had cancer, passed. I almost missed my plane from Newark to New Orleans and while rushing I tried to go up the down escalator, You had to be there but it was hysterical. Got to fly first class which I was on my bucket list. Not sure how I got booked first class but who is complaining.
Anniese I will look for you tomorrow.
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I'm here too! At Hope Lodge, everyone is so nice and the newly decorated rooms are beautiful! A volunteer group is coming in tonight to cook dinner, how sweet is that!
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So sweet! (c:
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Hi all. Got home yesterday evening after a long day of travel (3 planes!). My stage 2B went well and Dr D did exactly what I asked for--made my breasts smaller! Also a bunch more lipo which is much appreciated. The only thing I am mildly freaking out about is that my nipples (he made new ones) seem way too far off to the sides, esp. the right one. Everyone said not to worry as it is from swelling so I am trying to take this advice.
As usual the whole NOLA/center experience was fantastic. My husband and I had dinner with Downey and her husband and I got to briefly see Downey at SCSH. The comraderie from this group is such a blessing.
How are you Downey? How's the itching? It was wonderful to meet you:)
Spring and Nordy, thanks for asking about me! You are both so sweet:)
My recovery is going very smoothly so far. I remembered the advice of several ladies here (I think Trish and Nordy and Ann??) to walk walk walk and drink drink drink after stage 2. I did less of that last time but really got moving this time. It seems like it has made a difference and I am much less swollen. My only complaint is a very bad and itchy rash every place I have suture which I have gotten now with each surgery. They think it's an allergy/reaction to the suture and it happened again even though they started me on steroids.
Thinking of all of you down in NOLA now. You will do great!
Amy
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Today was my final Herceptin, end of treatment!
Somewhat dampened by an odd CT scan report, though. There are changes to the upper lobe of the left lung, possibly due to radiation, a hypervascular lesion within the dome of the liver, and small renal nodules most likely cortical cysts. PET scan ordered for this Wed (which I should have had in the first place, but Aetna denied). Anyone have these blips on their scans?Golly -- the path to NOLA is getting a little bumpy. I asked MO if this has the potential to cancel my recon surgery, and she said No. I'm set up to get my NOLA pre-op labs next week.
Thinking of you NOLA ladies, hoping to make my way there in less than a month! Smooth healing to you!
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Best wishes to all of this week's surgery ladies!!!! Please let us know how you're doing.
Ann, congratulations,on your final Herceptin. Sending positive thoughts for your pet scan.
LAstar, I have a feeling you'll have some funny commentary for us. Even though I felt so pathetic at times, while we were at the hotel after surgery, my sister and laughed constantly at interesting and and sometimes gross things that were going on with my body.
Someone mentioned overpacking... Despite advice from Bdavis and some do the others, i did overpack SO much and also purchased things that I'm sure I'll never use.0 -
KSue, I had a rash after stage 1. Dr. D wondered if it was because they (nicely!) gave me a new bra at the post op appt. The bra had not been laundered and maybe my sensitive everything freaked out, no one knows for sure. Dr. D put me on the steroid pack when I got home + benadryl for the plane trip and all ended well. I had sloughing skin on my entire torso. It looked like I should use dandruff shampoo instead of body soap and my girdle and bra were flaky. I was glad when that stopped!
Nordy, Still look forward to knowing when you may be in town. Went hiking in the Sawtooths and thought of athletic you and Betsy (B - are you going hiking near Sun Valley this summer?).
Caitlin, How are you?
Jen, The indents bugged me, too. I was left with a large dent where the 6 drains hung around my neck after my first shower. The nurse forgot to put the drains back in my little front waist pack and I was still too out of it to know any differently but did our eyes pop when I looked down, moved the stuff to the side and saw the dent in my left breast. I worried that this would cause lasting harm, but no problems. I still worry I will do some harm to my pretty breasts when I do push ups, (wear backpacks!), etc. since it does feel different. I just do not want to mess this up!
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Tamara... Yes, I will be there Aug 7-14... in Hailey...
And about dents. I still get a dent in my right breast from wearing my bra... At the end of the day, I have indentations on the cleavage side... I keep waiting for that to stop... someday??
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Sally, I had not heard that Glenn's daughter, Belinda, had passed. He is a favorite driver to so many, and he told me that he got strength from all us women after his daughter was dx'd with (it think it was) Uterine cancer. She was an only child! Poor Glenn and his wife. If anybody sees him as your driver (he is an older gentleman) please tell him our prayers are with him.
AnnAlinve, Congrats on your last Herceptin!!! Whoot! I hope they're just blips... a lot of us get strange things from so much treatment... hang in there. Thinking the best for you!
Amy! I hope you are loving your cute perky boobs! I hope everything works out "centering" wise...
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Oh gosh. I remember Glenn. I had no idea his daughter was ill. He was very kind to me but I think he only drove me once. How sad.
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Hi all,
I am still waiting to hear the results of the Independent Review with my insurance. Could be any day now. I find myself being very anxious and trying to keep busy after work. At times I want to just call my friends and talk and then other times I just want to be alone and feel sad. I keep telling myself these are normal feelings. I know I have a long journey as I still have to figure out the insurance to get to NOLA.
I find that I'm also having a hard time focusing on work. As I probably mentioned before I work in the HR field and manage our benefits, so I'm trying to stay positive at work but I'm so frustrated with my insurance that it is hard to be an advocate for it. I had been thinking about changing careers for the last few years and I'm thinking this may be my push to really go for it. Since learning of being BRCA 2 positive I realized I have been creating a "bucket list" in my head and finally put in on paper. Has anyone else done this? I keep thinking that this will all make me stronger and give me the courage to finally do something of those things I'll always wanted. Anyone else felt this way after their journey? Maybe I'm just feeling a bit emotional...
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I had my call from the SCSH today and cried tears of joy! The hospital is out of network for my PPO but they are accepting it's out of network benefit amounts and that fabulous news made me very happy. What a relief to have that burden of worry lifted. I am so grateful!
Smooth journeys and speedy recoveries to all of you there now.
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Wily - hurray!
Amy -glad you are home and doing well!
Jane123 - I sent you a PM earlier today. Did you get it?
Kerry - fingers crossed! I feel your pain! Insurance makes me crazy.
I just found out that the third party administrator for our self funded insurance through the hospital where my husband works is actually owned by the hospital! I am not sure, but isn't that a conflict of interest? How can they be pro patient at all when they are all dipping out of the same pot??? Any legal people have any clue about this?
Sally! Good for you to go to NOLA again despite what your famiy thinks! This is definitely something that needs to be fixed and you are not crazy after all! (I am totally winking at you, because I knew you were NOT crazy all along!)
Well, the Center must really want me to come for surgery because I keep getting stuff regarding my surgery date in July... Lol. They cancelled it while I battle the insurance company. I guess I had better triple check that though!
Lastar - thinking about you today. You will be great tomorrow.
Glostagirl! Thinking of you too! And Downey! And Anniese! Positive thoughts with all of you!0 -
Thank you Nordy, I need all the positive energy I can get! Can't wait to see Dr. M today and the center today.
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