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Any October 2011 Surgeries out there want to wait together?

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Comments

  • rachelvk
    rachelvk Member Posts: 564
    edited October 2011

    AJ - Wow! You are an inspiration! I hope the rest of your recovery goes as well.

    Trinity - So sorry to hear that you've developed LE. I know it's a risk but have pretty much just skimmed the information I've seen. I will go back and make sure I pay more attention. But we're glad to see you back here. We're here for you - and I'm sure there's some good support and advice from others who have developed LE.

    CookieMonster - It is hard to keep up with everyone here. Still, we're glad you keep checking in. Good luck with going back to work.

    Claire - You're so right about PT. I think the biggest thing that made me decide to go with the PS I chose was he was the only one who, when I asked about PT, said he'd have me see someone beforehand and then after. I saw the PT two weeks ago, and he gave me some shoulder and arm stretches, plus what I've been doing on my own at the gym. He arranged to see me tomorrow, the day before surgery, and we'll continue after surgery. I don't understand why some of these doctors, especially the plastic surgeons, don't get it. As 'beautiful' a job as they do, these operations are a huge assault on our bodies, and our muscles don't like that. PT should definitely be part of everyone's regular treatment plan. Good luck with getting yourself back in shape!

    Thanks for the well-wishes. The apartment management has agreed to extend my lease for six months WITHOUT the original planned monthly increase and to waive the extra fee. I do need to give them a note from my doctor, of course, but I was ecstatic. That gives me time to heal and see what chemo will be like, and we can take a little more time to look for a place that really matches what we want.

    Spent 13 hours at work today trying to get everything done, and I STILL have to go in tomorrow. Still waiting on the medical leave form from my BS so I can turn that in. I'm really starting to feel as if I'm a different universe - I've felt that way on and off, but now it's all closing in. Life as I know it is about to change in a major way. Thank you so much to everyone who's been posting - you've shown me it's not easy at all, and can be downright sh#tty, but you've also shown me that we just pick ourselves back up and start swinging again.

    Good luck rk and 9911. I'll be thinking of you tomorrow. 

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,293
    edited October 2011

    Trinity,

    Thank you for sharing your story. It is a travesty that breast surgeons and their staff do not talk to patients about LE. Some women think you can't get LE after SNB but that is clearly not true. Your attitude is great and I hope you continue to feel better.

    Caryn

  • ginger48
    ginger48 Member Posts: 1,437
    edited October 2011

    AJ- hope the BP is coming up now and that you got some rest last night.

  • CLC
    CLC Member Posts: 615
    edited October 2011

    AJ...I hope that things improved during the night.  As quickly as things went downhill, they can turn back uphill.  I hope that happened in your case...  I am rooting for you...

    Trinity...I like your fighting side!!!  You know...you are in my thoughts...

    Rachel...so glad you got the apartment reprieve...:)

    Rachel and Eema...good luck tomorrow...I hope all goes smoothly...

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited October 2011

    Trinity,

    I am SO, SO sorry this has happened to you.  Frown  Sadly, this seems to be a chronic problem with doctors not educating their patients on LE.  Not that you can always prevent it from happening, but geesh - there are many precautions you CAN follow that can reduce your risk - why not educate, educate, educate?  Huge HUGS to you, I'm so terribly sorry you have to deal with this. Frown 

  • deniseday
    deniseday Member Posts: 75
    edited October 2011

    Trinity, thanks for sharing.  My BS hasn't said a word to me about LE other than not to get "stuck" on that side and to wear gloves while washing dishes (which I don't).  I had the ARM (axiallary reverse mapping), with SNB and 4 node removed.  I still carry my purse on that side and sometimes I actually forget about it.  I'll be more careful and I'm going to start researching now.  Also, I'll add this to my list of things to ask her.  I hope I get to talk to her before my surgery Friday before I'll too out of it to remember what she says.

     Thanks, Denise

  • Kelleyod
    Kelleyod Member Posts: 125
    edited October 2011

    Hello Ladies. . . Hoping Tuesday is starting off well . . . .

    AJ - you go girl!  Get some rest and ramp back up!   We are all rooting for you!  AND ready for you to direct the stretching we all need. . . . I definitely need that. 

    Trinity - I'm so sorry.   Really.  I've been trying to be extra extra careful on the LE side though I got very lucky that they took a minimal number of lymph nodes.   One of the reasons I chose my cancer center was because protocol was PT the day after surgery - PERIOD.  I was shocked that they were the ONLY one of the five I interviewed to even talk PT.  Now - don't get me wrong, I think I may have known more on LE then my PT did (not much - just a little more) but at least someone was dragging my phenergan riddled bum out of bed to stretch . . . .   I'm totally wanting more info on what to do / not to do to minimize that risk if anyone has a link to share.

    Rachel - GREAT news on apt!   Woohoo!  What a win!   Get that stress off of you and move forward, girl.

    Rachel and Eema - thinking of you guys today.    I hope peace is your friend.  Eema - I'm sure you're going to have a very funny story to share somewhere along the way. . . . your humor has been priceless. . . good luck and go get 'em today!

    Ann - on the TE pain:   went to local support group yesterday and one of the women was so advocating ice packs to ease discomfort . . . now I thought, "Duh. . . "  but it really had never even crossed my mind! Just a thought for you in case you want to try it. . . . .

    I am headed to Oncologist today and grateful to get that appt done.   Drain is *maybe* slowing down. . . ha. . .but it is only one drain.  I'm not complaining.  Don't know how y'all manage with FOUR . . .but I'll learn that soon, I'm sure.  

    Hope everyone is progressing nicely . . . .  hugs to all. . . .

  • Eema
    Eema Member Posts: 403
    edited October 2011

    Hi Girls!

    Rachel, I didn't know we were surgery sisters!  I'll pray for you if you pray for me!  :)

    So, at first we were worried about a spot on my cervix that turned into endometriosis, which I wont have to worry about again after tomorrow.  What IS worrying me now is the robot that will be used for the robotic assisted surgery tomorrow.   I mean, Rosie, from The Jetsons, or the robot from Lost In Space would be cool, but NO WAY am I having R2D2 do my surgery--HE HAS NO HANDS!!!

  • gamergirl
    gamergirl Member Posts: 53
    edited October 2011

    Hello Ladies!

     I'm sorry I sort of disappeared.  With my new diagnoses of stage IIa, and my infections and all that, I just had to step away from the boards and take some time to heal.  Everything was just too overwhelming.  

    I feel so much better now though.  I'm healed up okay and am ready to start chemo on Nov. 4th.  I can't tell you lovely it was to read all the posts and see how many of us are healing well.  I know that so many ladies are still in waiting, and I know that waiting is horrible.  I wish there was anything that would make it easier, but there just isn't and it sucks.  I would give you all hugs if I could.

    The left side where they took all the lymph nodes is not feeling as well as I thought it would.  I can't lift it over my head yet, and I have alot of pain all they way down to my elbow.  I'm hoping in time that gets better.  

    I had my drains taken out at my 2 week post op, even though 2 of them were still draining a ton.  The Dr wanted to leave them in longer, but the infection made that impossible.  Now I have quite a bit of fluid buildup.  If it doesn't start to reabsorb, they want to take it out by needle.  Blech.  On the upside, the fact they left a LOT of skin for reconstruction combined with the fluid gives me sort of an A cup.  If I roll it all up into a bra.  Not quite the D's I had before, but at least it isn't a cavern I can rest my coffee cup in.

    It is a GORGEOUS fall day here, and we are expecting lots of snow tomorrow.  I am finding so much pleasure in these little things.  I wish that much peace for all of you :-) 

  • Dukes_Up
    Dukes_Up Member Posts: 112
    edited October 2011

    Eema~ Oh honey- I'm sorry about the procedure tomorrow (had to laugh at R2D2 though!  I can see how robotic surgery might freak you out but it is SOOOOOO precise.  My stepfather had a great experience with this (only it was for his prostate!)

    rk and 9911~ Hope you ladies are doing ok.  Thinking of you both! 

    Kelleyod~ I'm excited to start my new job as stretching/exercise coach!  :)  I was disgusted with the lack of info at the hospital re: movement/range of motion/PT.  

    CLC~ Thank you for the continued good thoughts my dear!  Update to follow! 

    Well, I'm home after a rather frustrating morning.  I'm still dealing with conflicting medications from both surgeons and having a grand old time with an allergic reaction to the IV antibiotic.  So... I'm super blotchy, itchy -- and now BITCHY!  DH just went to fill my new antibiotic script and get some Benadryl.  This had BETTER knock me out so I can sleep.   4 hours of sleep since Sunday night is just NOT cuttin' it for this girl.  

    Ok Friends~ I'm off to get settled into the recliner.  Be back!

      

  • Dukes_Up
    Dukes_Up Member Posts: 112
    edited October 2011

    Gamergirl~  We were posting at the same time!  I am SO glad to get your update.  I totally understand having needed to take a break but so happy happy happy to have you back!  :)   Do you already have your treatment plan in place for the 4th? 

  • CLC
    CLC Member Posts: 615
    edited October 2011

    Gamergirl...I am so glad to hear things are getting better...  It really is a relief to see your name...:)  And, of course you didn't have the focus or energy for the boards.  If anyone understands, it is the women posting here. 

    Dukes Up...HOME is good.  I am sorry about the itching.  I am sorry to hear about the no sleeping.  It will get better...I know, small comfort when you feel BITCHY...  But it's the best I've got...  Really, I hope you are feeling better soon... 

  • GrandmaV
    GrandmaV Member Posts: 1,045
    edited October 2011

    Hi everyone,

    I've been hanging out on the November chemo thread, lately.  I've also done some research about LE.  There's a great site about the Lebed Method:

    http://www.gohealthysteps.com

    Since their are no classes in my area, I will probably order her book and DVD. 

    Hope everyone continues to make good progress. 

  • gamergirl
    gamergirl Member Posts: 53
    edited October 2011

    Dukes_up -  Ugh, I hope you get some sleep soon!  I hated the IV antibiotics.  In fact, I hated the 2 they had me on when I got home.  It was followed by a raging yeast infection.  Hopefully the benedryl will knock you out!

    Yes, I have my treatment plan.  I'll be on Tax/Cyt every 3 weeks for 6 cycles.  Then daily rads for 6 weeks.  Which means that by next summer, I'll be cancer free and healing from the treatment and maybe even have some hair back.  It is such a funny thing, that they have to make you sicker to make you better.   

    CLC - Thanks for being so understanding.  It's been hard for my family in general.  But, like we women always do, we just pick ourselves up by our bra straps and start again.  I am now accepting my "new" normal.  

    So my mom made me pads to stuff inside my sports bra.  They are brilliant.  She just cut circles out of either cotton or fleece, sewed them together and stuffed them.  Some are larger then others as we tried to decide which looked "normal" when on.  It looks better then when I tried to stuff my bra with a pair of rolled socks.  Just an idea if anyone is crafty.  And they keep my chest warm.  I have been suprised that my chest gets a bit cold.  I'm used to alot more insulation there! 

  • melissah
    melissah Member Posts: 2
    edited October 2011

    I had BMX on 10/12 and I've started to notice what seems like muscle pain on the underside of my upper arms.  Nowhere near the incisions.  Is this because of the position they have you in during surgery or could it be the nerves coming back?  I was pretty numb in that area for the first few days.  Just curious.

  • Maria_Malta
    Maria_Malta Member Posts: 667
    edited October 2011

    Hello girls...haven't posted in some time, and then I see all the new posts and get discouraged as I forget what's been written 2 or 3 pages back!! 

    Dukes-up, impressed that you came back to say hello so soon after surgery, and keeping my fingers crossed that it was just a 'bleep' last night and you're now full of beans!

    Kelleyod, hello, nice to to 'see' you here again and good to know that you're progressing.

    Rachel, BRILLIANT about your flat...one thing less to worry about..you can go in to surgery without that stress at least!

    Trinity, so sorry to read about your experiences with LE....for all of you who are still to have surgery it is important you start v simple arm exercises from day 1... I was lucky as was visited by a breast care nurse, as well as a PT. and they gave me all sorts of things to bear in mind to avoid getting LE, apart from doing the exercises..here are some of their recommendations:

    * to avoid lifting on the side where lymph nodes might have been removed... think about NOT lifting electric kettles, buckets of water, shopping bags, and other bags which are heavier than a small handbag, etc

    *avoid lifting yr arm higher than your shoulder for the first week...so put all kitchen ingredients and equipment which you use often (tea/coffee/sugar/ mugs/etc) down on the kitchen counter to avoid lifting the affected arm.  Do NOT hang clothes on a high washing line...use a clothes horse.

    *keep your arm moisturised to avoid cuts as a result of dry skin.  Rub moisturising cream in an UPWARD stroke

    * Use rubber gloves to do the washing up and gardening glovesif you do any gardening.  make a habit of this from now on.

    *Avoid taking injections, blood pressure in that arm, even after you recover from op.

    We can get LE at any time in the future, not only immediately after operation.  breast care nurse implied that surgeons rarely tell patients this very important fact!

    RK and 9911 thinking of you today, and Eema and Rachel GOOD LUCK for tomorrow!!!

  • Maria_Malta
    Maria_Malta Member Posts: 667
    edited October 2011

    Nice to see you Gamergirl...had typed up my post but not finished it, then had to go to do something else and missed out on your message... I had chemo before my surgery so would be happy to answer questions/give advice et c....you will manage I'm sure, just like I did!

  • Kelleyod
    Kelleyod Member Posts: 125
    edited October 2011

    GamerGirl!    You're back. . . .   totally understand sometime you MUST step back and take a break and just breathe. . . .   you know you can do that with us. . . .    glad you are finding new normal.  Definitely not easy. . . .we're rubbing your back. . . .   xoxo

  • GrandmaV
    GrandmaV Member Posts: 1,045
    edited October 2011

    Gamergirl,

    I know you've had a rough time lately, but you still have that sense of humor. It's good to see that again. I'm anxious too, when I allow myself to think about it. Tomorrow I'll find out what my regimen will be. I took a shoulder pad out of an old dress for some padding.  That works pretty well too. It's good to see you.

  • ginger48
    ginger48 Member Posts: 1,437
    edited October 2011

    Gamergirl- glad to see you back and of course we understand you taking some time away.

    Rachel and Eema- sending you good luck for tomorrow.

    DukesUp- I had that itching and I was SERIOUSLY bitching! May your recliner and Benadryl combine to give you a restful night.

    Maria-Malta- thanks for all the info on LE and stretching. No one ever shared anything with me about this. My shoulders are frozen and I will be starting PT following exchange surgery on Thursday.

  • rachelvk
    rachelvk Member Posts: 564
    edited October 2011

    Gamergirl - Welcome back! You're right - the waiting and everything to do with cancer sucks, but you do really come to appreciate the beauty in other things. It was indeed a gorgeous day today. Hang in there.

    rk and 9911 - Thinking only good thoughts. Hope today went well for both of you.

    Eema - I'm praying away. I'll be thinking of you tomorrow.

    I can't say I'm ready, but I guess it doesn't matter. Just took a shower and I'm waiting the hour before I can use those cleansing cloths. I have to be at the hospital at 6 am. Ick! Had dinner with my parents and boyfriend, and it was a really, really nice dinner. I sort of wish my boyfriend had a full length mirror - I'm so short I can barely see my head in the mirror above his bathroom sink. Just was sort of hoping for one last look. But I keep reminding myself that other than the nipples, most of the rest of the outside will hopefully still be there.

    I'll be thinking of everyone. I've been so glad to have met you all (despite the circumstances that have thrown us together) and look forward to everyone's recovery.

  • gamergirl
    gamergirl Member Posts: 53
    edited October 2011

    rackelvk, thinking about you today and praying for an easy recovery.  see you on the other side!

  • MargieC
    MargieC Member Posts: 302
    edited October 2011

    Rachel and Eema. Thinking of you both today.



  • deniseday
    deniseday Member Posts: 75
    edited October 2011

    Girls, I have my surgery Friday.  BMX with immediate NS reconstruction using alloderm with saline implants.  I'm freaking about the drains.  Can some of you give me any encouragement or words of wisdom concerning the drains.

    Thanks, Denise

  • Dukes_Up
    Dukes_Up Member Posts: 112
    edited October 2011

    Good morning All! Typing from my phone - sorry in advance for typos and such!
    Rachelvk- Thinking about you constantly this morning. I'm sure your surgery is now under way. You will do great :)

    Eema- Sending tons of smooth surgery vibes! Say hello to R2D2 for me!

    Well I finally fell asleep for a few hours. While I still have a nasty looking red rash, Im not the emotional trainwreck I was last night. I really worried my husband as he is not used to seeing me break down like that. Anyway, I'm just chillin' and waiting for my PS office to call back. The on-call doc last night wants me to be seen today.

    How I would love a shower and shampoo right about now.. I feel so disgusting.

  • CLC
    CLC Member Posts: 615
    edited October 2011

    Dukes Up...  My dh washed my hair over the tub by pouring water from a pitcher.  Not ideal, but made a world of difference...  Then took a very shallow bath, while my dh held drain up and out for me...

    Denise...the drains are okay...not fun, but okay...  They are not difficult to empty, they are not as gross as they sound...at first, red, then, after a couple of days, they start to run yellowish.  They are not very painful.  I had discomfort with them that I never really identified as them until they were out...that's how mild the discomfort was...couldn't even place it.

    They are a pain to lug around.  I kept mine in a fanny pack.  Then, when a lot of swelling was down and I put on my snug camisole, it was much easier to carry around.  Wish I'd bought a looser fitting camisole so I'd have had it the whole time.  I was a little nervous about snagging them.  A couple of times, when pulling down my pants, I caught one for a moment and it gave a little tug.  It didn't even hurt.  Just scared the crap out of me!!  But I was fine.

    Is there anything in particular you are nervous about? 

    Maria_Malta...thanks for the listing of your le precautions.  Sounds like they are a little more proactive there than here...Yes?

    Melissah...I think I had a similar ache in the back of my upper arm.  I attributed it to atrophying from sitting around and keeping that arm so immobile.  And, in my case, it has improved, so I am sticking with that answer for now.  However, there is something called cording that the le folks have discussed and it might be worth a question over on the le threads.  I don't know much about it, but someone else was asking about a restrictive feeling and the ladies with le said it might be that precursor they call cording.  

    _______________________________

    As for me...I can say that pt has given me a new lease on life (or at least my left arm and chest).  I am finally feeling some sense of ownership of that part of my body again.  I was feeling so overly protective and like I wasn't allowed to use my own body.  I am shedding that now.  It is very liberating.  Now, I guess the next step is to shed my steristrips...How long will they "stick" around???

  • LisaWade
    LisaWade Member Posts: 42
    edited October 2011

    Hi All,

    I'm starting to come around now 9 days post op I still have all  drains in but I hope tomorrow to get at least 1 out the home care nurses are removing my staples tomorrow (I'm so not looking forward to that but I am looking forward to having them out) I am so sorry to hear of some of the nasty set backs but I must say ladies as a group I think we are all doing pretty darn well! I am so proud of each and everyone of us, this is one tough road to travel and yet we are all helping each other so wonderfully step by step. My love thoughts and prayers as always Lisa

    Oh and deniseday the fear is so much worse than the drains really they are a pain in the butt, but please believe me you will be fine, the biggest thing I will suggest is to make sure they are taped well in place it truly does ease any discomfort if they are not jiggling around on you and of all the tricks I've tried the best is pockets in my jammies for holding the drains (that's what I have found anyway <3 stay stong all!

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,293
    edited October 2011

    Good luck to all those having surgery today! Denise, the drains are just an inconvenience. As you may have read, people manage them in different ways, fanny packs, pinned inside blouses or drain management camisoles, I am usually grossed out by medical things but I got used to taking care of them after a few days. I was very happy when they were removed!

    Caryn

  • CLC
    CLC Member Posts: 615
    edited October 2011

    Ginger and Cookiemonster and anyone else having surgery tomorrow...good luck...  I hope all goes smoothly!

  • Maria_Malta
    Maria_Malta Member Posts: 667
    edited October 2011

    Hello to all....have some brilliant news...my pathology report showed that there is no sign of cancer in any of the tissue tested.... this means that the chemo I had before the op killed off the tumour completely, and all the lymph nodes tested were also clear, although one of the nodes showed signs of scarring which indicates that there might have been something brewing there....point is that I am now clear...can hardly believe it and have an almost superstitious fear of feeling too happy about this.... please, all of you who might need to have chemo, be encouraged by my result...chemo works and it will do for you as well!!

    Denise, Don't worry too much about drains, they're not exactly the prettiest things to look at, but you'll manage.  As someone said they're not painful and you are only aware of the fact they cause a certain discomfort when they are actually taken out.  Be careful not to sit on them when you are getting in or out of bed as that's a bit painful, apart from making you panic about pulling them out altogether (highly unlikely) One suggestion I was told re carrying round drains is a really simple one (if you are in hospital or at home,)...it's to put them into 1 or 2 small plastic bags which you could then hang from a belt.  Not a huge turn-on, and certainly not glamorous, but a simple practical solution.

    Gamergirl I might have to have fluid/blood removed from my left boob as it is still very bruised and enflamed...going in to see bs on Monday and he said he'll probably 'aspirate' it...another fun thing to look forward to, but after the actual op, the drains, and everything else it'll hopefully be a relatively painless procedure... fingers crossed. 

    CLC glad to read that you're feeling a bit better...I don't have an ache but numbness in my upper arm.. had never heard of cording, but like you I choose to ignore what it might be..prefer to put my head in the sand and hope for the best!

    Cookiemonster and Ginger will be thinking of you tomorrow...we'll all get there don't worry!!

    Love best wishes and healing thoughts to you all xxx

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