DIEP 2013

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  • fredntan
    fredntan Member Posts: 1,821
    edited April 2013

    Me again. I used a lot of pillows to make my next after. Am downt to four now

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  • faith729
    faith729 Member Posts: 244
    edited April 2013

    Robin thinking of you :) you should be finishing up shortly and on your way to ICU soon. I hope you love the nurses at BWH as much as I did.



    Kuka no problem I also wanted to mention that the sides of the pillow move with easy so you won't have to push to get up really. Please listen to the ladies here and your doctors regarding recovery. I am a bit of a control freak and that was so tough for me to give up plus I was afraid that my husband would forget things and not do them the best way(my way) ;) but honestly he has done such a great job keeping up with things and helping to care for me as well. I think they surprise us when we need them to step up.

    The micro vascular part of this surgery is so delicate and post op recovery instructions are so important so just make sure your careful that's all.



    Rough day slept through my pain med time by quite a bit..I would advise against that :/



    Take care ladies..

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  • Moviemaniac
    Moviemaniac Member Posts: 949
    edited April 2013

    Thinking about you, Robin.......sending you positive thoughts for an uneventful recovery.......hope you are resting well....let us know how you are doing when you can.  We are thinking of you, and we are here for you!

    Gentle post-DIEP (((Hugs)))

    Fredntan-you give me hope that I will be able to deal with stage 2 alright......I have my consult May 1st, and I know he wants to do the surgery before June....thanks for the update!

    Everyone else-

    Namaste and God Bless - Jackie

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  • kuka21174923
    kuka21174923 Member Posts: 427
    edited April 2013

    Thank you for the advise faith. You know, even though I'm a control freak I have to admit that I can't wait to have some ME time! I haven't have that since I had my first child 8 years ago. Just the thought of being able to sleep in and not have to worry about what the kids are going to have for dinner, or if my 2 year old is going potty or doing it on her pants, puts a smile on my face😄. I could use a break! Taking care of 3 small kids and running a household is not easy, specially when I have a 2 year old red haired girl that has her own mind! I need a vacation! I know this wont be like going on a cruise, but hey, I'll take what I can get!

    Just talked to the lady from my PS's office that had the DIEP. She's so happy with the results. She even went back to work after just two weeks!! Of course, she had already have a mastectomy, so I'm sure that's a little different too. She said she will come and visit me at the hospital. How nice is that?!

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  • Moviemaniac
    Moviemaniac Member Posts: 949
    edited April 2013

    Hey Kuka.....I have a red-headed daughter, too!  Stubborn and obstinate were her middle name.......sadly, she grew up, and is now a 33yr old (still redheaded, too) married and living in Los Angeles.....I miss her.

    Just relax, and let others take care of everything else, then you can concentrate on taking care of yourself!

    Namaste and God Bless - Jackie

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  • kuka21174923
    kuka21174923 Member Posts: 427
    edited April 2013

    Moviemaniac, isn't true? I don't know why they're that way. I've always heard that red haired people were hard headed and more difficult, but I never believed it. My sister has a son with Red hair a couple of years older than my daughter. She told me to be prepared because she was going to be a hands full. Man, was she right?

    Oh, and we call her sassy red! Lol

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  • seagan
    seagan Member Posts: 166
    edited April 2013

    Just want to second whoever it was that mentioned keeping a log of meds taken and when. My RN brother set me up with a simple sheet to track all that and thank goodness. There were plenty of times I totally forgot when I last taken a pain med, especially at the beginning. Helps too when you're transitioning off Percocet to Tylenol and need to track how much acetaminophen you've had in 24 hrs, etc.

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  • faith729
    faith729 Member Posts: 244
    edited April 2013

    Hahahaha ! Kuka and movie watch it ladies your talking to a 32year old sassy red head ....too funny and so true ;)



    Seagan I had gotten a few journals as gifts and chose to keep track of meds and body temps in one of the smaller ones.



    Tomorrow morning I'm heading to my plastic surgeons office to see if I have an infection in my left foob. No extra pain a lot of dark red spots.



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  • jtbsmom
    jtbsmom Member Posts: 19
    edited April 2013

    I had Deip reconstruction on March 11.  I am recovering well but have a question about "massaging" the DEIP breast to relieve the hardness.  Is there a specific technique or method?  I am very pleased with the results and was able to return to work in 3 weeks.  

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  • Janet_M
    Janet_M Member Posts: 1,068
    edited April 2013

    Thanks Geralyn - It's reassuring that questioning the decision is normal. Or sort of normal. I keep thinking that if I'd had full radiation I'd have had everything behind me by now.

    But - I finally got a surgery date. July 4! Not technically a Canadian holiday, but it's nice to know that there'll be fireworks and marching bands close by. And Up here in Toronto - I will be having my own Independence day. Independence from Mammograms & Independence from the Big C.

    However - I'm trying to get the date pushed forward. It's been over a year since my partial radiation and the doctors all told me it should happen within 6-12 months. I've been on the phone constantly with the hospital stating my case - and reminding my surgeon that I was supposed to be 'closely monitored' but not only am I having to ask for appointment, but I had to remind them of surgery. 

    Then I called my PS's office for the tenth time and she gave me he usual speech about the challenges os scheduling two surgeons and an OR room for 10 hours, and that there were two patients ahead of me. Then she said 'And since your surgery is prophylactic...'. WTF? I told her that it was not prophylactic, it is an essential part of my treatment since I'm bilateral and did not have radiation on my left side. 

    So I emailed my other surgeon and he said he would get in touch with the PS and see what he could do. In the meantime, I've asked for an Ultrasound because my whole treamtent paln has been about acheiving the lowest rate of recurrence, and that DOESN'T involve going too long without treatment. 

    Both Doctors are vacationing for a two week period in April (not together) so I must get things settled. My OR nurse is also going on vacation and I told my surgeon that I will absolutely not go into the OR room if Nurse Deborah isn't there to greet me. Without this woman I would have completely fallen apart. She's special. Before my first surgery, some dear friends got together and made me 1,000 paper cranes. I carried one in my hand on the way to the hospital and right into the waiting room, and into the OR. Nurse Deborah took it from me and attached it to the IV stand, and when I awoke, it was sitting on my chest.

    Faith - I'm so glad you're sleeping well

    sbelizabeth - I have empathy butterflies on your behalf, but mostly from excitiment.

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  • MartyJ
    MartyJ Member Posts: 1,859
    edited April 2013

    Janet - have you considered talking with another surgical team?  Start with the PS and then the BS they prefer.  You might just be able to move this on appropriately.

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  • heavenschild
    heavenschild Member Posts: 212
    edited April 2013

    Ibis Mom - the friends who had SX at NOLA will tell you not to and I agree with them. There are many little blood vessels, capillaries, etc., just getting oriented and I didn't want to squish them. (Such a technical term) My PS wanted me to, but then I had pain issues and the thought of compressing already painful tissue wasn't up my alley.

    p.s. My kids live in Ocoee, FL, small world dept! I used to live in Winter Park, I love FLA

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  • Janet_M
    Janet_M Member Posts: 1,068
    edited April 2013

    MartyJ - I hadn't considered an option, to be honest. I like my surgeon, who has operated on me twice (two lumpectomies). And I have so much faith in the PS and his work, that I would feel most secure if it were he who did the work. I've met with several of his patients and I really feel strongly that he is the doctor who I want for this surgery.

    My BS and PS have worked together on hundreds of DIEP surgeries, and I've seen the results. 

    But I may have to reconsider if things go on too long. It's a good suggestion,

    Thanks

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  • Morningsun1
    Morningsun1 Member Posts: 649
    edited April 2013

    Hi everyone, we are certainly not the quitely bunch like some other threads, thanks to all who contributes. We all learn a lot from each other.

    I tend to have more issues that seem completely unrelated to surgery/bc: mouth sores (not in chemo), toothache, rash on my ear/face, constipation...

    About massage, I seem to remember reading it being recommended somewhere on another thread. I am not sure how many weeks after surgery you are soppose to do it.

    Movie, I have an appt with ps on April 25, should I be asking about the next step? I will be just shy of 3 months out.

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  • karen-67
    karen-67 Member Posts: 1
    edited April 2013

    Hi all, been following this web site for the past 2 yrs after my mastectomy in 2010, great for support and informationLaughing I had delayed, due to rads, unilateral DIEP recon. Feb. 13th of this year and am very pleased with the results. Not sure yet if I'll need any revisions other than nipple and tatooing, not everyone does. My question is, has anyone had to deal with seromas/hematomas and incision dehiscence? My abdomen still feels quite tight and "full" and I'm wondering if this is normal after almost 2 months. Fortunately I'm a nurse so I've seen these things and can do my own wound care, I'm not freaked out about it, just wonder if anyone else has experienced this? My PS is 3 hrs away return trip so I try to take care of this stuff on my own as best I can. Any advice would be great,

    Cheers

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  • kuka21174923
    kuka21174923 Member Posts: 427
    edited April 2013

    Janet, I must agree with Marty. You do t want to wait too long, specially if they are not monitoring you closely. If its been over a year I'm assuming they will be doing an MRI? You don't want to have a BMX if the BC cells have spread somewhere else and you thinking that you're free when it's developing somewhere else in your body. Your BS is the one that needs to set up your tests so that they can see you no more than 6 months apart.

    Any of you that ha e already done the DIEP, where did you sleep after you went home from the hospital? After thinking about it I came to the conclusion that my bed might be too high for me to get in and out of without pain. Maybe I can put a step at the edge of the bed. My husband said that if we need to we will buy a recliner (he's always wanted one) so that I can be more comfortable. But wouldn't it need to be electric? Please share with me so that if I need to get one I can do so before the surgery.

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  • MartyJ
    MartyJ Member Posts: 1,859
    edited April 2013

    Kula - I slept in a bed with pillows to support my back and under my knees. We have a recliner, which I sat in during the day to be out of bed (this was 10+ days after DIEP). One caution about buying a recliner - they take up space and if you really don't want one in your house never, ever let one in the door. They are like an addictive drug to guys. Once in the house, they can never let go.



    Re Massage - I am a NOLA girl, but my doc suggested that I gently massage them after about 6 weeks. A flap will usually not fail at 3 weeks out, but don't push it. Time is what is needed for the hard spots to soften. After 4 months most of the large hard area has disappeared.



    Karen - my abdominal is still tight. Because of the surgical disruption it can take a while for the bloating to go away. At 4.5 months I finally got into my fav pants. My incision like is very tight and knotty and ropey. Doc M will be fixing it and lowering at stage 2.

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  • jtbsmom
    jtbsmom Member Posts: 19
    edited April 2013

    thanks for the information. my PS told me to massage the upper left breast. I have just been lightly rubbing in a circular motion several times a day-but wondered if there was a specific method to use.

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  • nihahi
    nihahi Member Posts: 3,841
    edited April 2013

    Wow....so much connecting going on....Just love it, but hard to keep up! Cherrie, fredntan, jtbsmom, Karen_67, I'll get you added to the list. 

    Robyn....hope you've woken up to sunshine and feeling well. We all sent out hugs for you.

    Geralyn...you will be such a good support for that lady, amazing how many of us there are, so wish the numbers would be going down, but, I also think it means they are catching it earlier, which should result in better survival overall. 

    I've got a red-haired nephew....he's the fighter pilot....

    TammyT....are the mouth sores any better? Must be hard to eat well if the mouth is tender.

    sbelizabeth....please keep your legless reptiles with you!!!! You and I are on the same page....This is not about anything else to me, than being able to finally put bc in the rearview mirror.!!!!!!!

    Kuka...such wonderful support. I'm betting that contact really helped set your mind at more peace?

    Faith....sorry to hear about the meds "derailing". Good info though. I would have thought that if you were sleeping through med time, it meant you were feeling ok?  Apparently not the case?  Any advice from the veterans on this...Should we get woken up to do meds...I thought sleep was more needed????? HELP!!!!! Sure not liking the sounds of a rash...maybe it's a drug reaction, not an infection???

    Seagan...the med journal sounds very helpful...a good way to make note of lots of progress too, like increased walking, etc. 

    I spent all of yesterday loading, packing, unloading, packing, etc. to help daughter get moved out of her place and into ours. She wasn't in any way, ready, so much of the time it was waiting for her to actually pack stuff into boxes and bags. By the time we finished, she and I were almost both in tears, but we got through it. I would have handled it better if I hadn't bounced off the sidewalk yesterday, but it's now done. Well, it's either in a storage locker or spread out all over our stuff in the condo. I think it'll be good for both of us, that I'll be Out of the picture for most of the next week. The good thing about yesterday is I got two pickup slips from the Postal office. I'm hoping its the "jacki" and my "betsy" pants, which my sister (Jacqui) mailed from Seattle. I'll be Jacki/Jacqui'd !!!!!!!

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  • bdavis
    bdavis Member Posts: 6,201
    edited April 2013

    Janet... I had a lumpectomy initially and then chemo and was supposed to have radiation and be done. But I opted for MX instead thus being able to skip rads... My MO said he wanted me having the MX within 2 months of chemo ending since I was not having radiation. So, not to be an alarmist, but if a year has passed since you didn't do radiation, you really do need to get your MX ASAP.

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  • Moviemaniac
    Moviemaniac Member Posts: 949
    edited April 2013

    Karen-I know too much about wound dehiscence....2 weeks out from DIEP 7-8" of my abdominal incision blew out.....I ended up (saline-soaked) gauze packing it 2Xdaily for 3 weeks.  At that point, the infection was healed, and I was offered the choice to leave it be, use a wound vac, or have it re-sutured.  I chose to have it re-sutured.  Almost immediately, I noticed an increase in energy-probably due to the fact my body was no longer having to work so hard to close that gap.  I am almost 3 months out now, and like Marty, my stomach is still somewhat swollen, and hard.  I think tincture of time is what works for that.

    Nihahi-you were pretty quiet yesterday-now I know why-packing and moving!  Ugh! I think you should have let DH and DD deal with all of it-you stay home in rented recliner-relaxing!  Oh well, at least SOME of the heavy lifting is out of the way!  As far as the meds go, you should always stay ahead of the pain, which usually requires waking up during the night to stay on track.  I was doing it myself when I came home....I set my cell phone to the loudest, most obnoxious alarm I could find.  Even in my drugged up fog, I would do anything to get rid of the hideous noise....including waking up to take my meds.  I also wrote the time down, and what I had taken.  It is manageable.

    Janet- I hope you are able to get something worked out (for your sake) soon.  I had to wait 2 1/2 months after I made my decision to go with DIEP, b/c the PS was already booked out that far. My BS said she would be available whenever the PS was.  I thought I would go crazy before the time arrived. (I didn't know about this site-I think it would have helped tremendously!)

    Re: Massage-Like Marty, I was told by PS after 6 weeks gentle massage of breast is good, and I do it every day. My noobs are mostly soft, but there are a few areas that I have noticed have gotten softer since I started massaging them.

    Robin? Hope you are doing fine-please let us know asap, okay?

    Faith, I am keeping fingers crossed for your PS visit-I hope it is nothing serious.

    SBElizabeth-LOVED your description of wanting to fire-bomb your office......there are days I would like to do that to my home!

    To all you "newbies"-so glad you are here-this is a wonderful thread-lots of help, encouragement, and advice!

    Namaste and God Bless - Jackie

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  • lilyun
    lilyun Member Posts: 54
    edited April 2013

    Hi Everyone, I've been quietly keeping up with everyone. Going for my stage 2 on Monday 4/15. I'm excited because the PS said that along with my dog ears he would tighten up my stomach some more so that I can keep my pants up! My husband has been singing "Pants on the floor, pants on the floor". I swear this was not a problem prior to surgery! I am also having my belly button recreated ( I had had a hernia so they removed it) Contouring of breasts, nipples, and removal of a bulge on the left side of my back from my first mastectomy 9 years ago. Also, the pelvic region was more pronounced on one side. He said that this is loose skin ( so glad that he did not say that it was fat) and that he would pull this up into the incision to make that area flatter. As is usual in my life everything happens at the same time and I had to go for a job interview today after I met with my PS. Though that my nerves were going to lose it there for awhile. They are trying to squeeze in the second part of the interview this week as I figure I will be out of commission for two weeks. Love and prayers to all.

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  • Janet_M
    Janet_M Member Posts: 1,068
    edited April 2013

    Thanks everyone. Just to clarify-I did have partial radiation because of positive nodes.

    Bdavis, like you I wanted surgery over radiation but its hospital policy to radiate when there are more than two positive nodes.



    Currently I am sitting outside my surgeons office waiting to see him. His secretary wasn't returning calls, so I jumped in the car and came to the hospital.



    Does anyone remember the scene in Fried Green Tomatoes when Kathy Bates got behind the wheel and started ramming cars in the parking lot ? Well, that's me today.

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited April 2013

    Tawanda!!!

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  • Gini23
    Gini23 Member Posts: 183
    edited April 2013

    Hi Ladies!  

    Man I can't let so many days go by without reading... so much to catch up on!  Sorry not to hit each person by name... but wanted to touch on some of the topics of late:

    Status update:  I am 4 weeks out, down to just one nap a day - which I am overdue on now but wanted to check in here.  Wink  I am taking walks around the neighborhood, driving a bit, and doing most of the stuff around the house - cooking/kitchen clean-up/laundry, but have a cleaning service for the "big" stuff.  This week I am back to being a caretaker because my 14 yr old DD has a mild concussion!  She is bored out of her mind.  I'm still wearing the big velcro binder around my waist and not wearing much besides sweat pants, PJs, and yoga pants.  I think I'll get the go ahead for bras this Thursday at my 4 week check-up, but certain there will be restrictions to wires.  Pain is not bad AT ALL - really mostly just sore at times.  I had some sharp "nerve" pains earlier on, but those have gone away, thankfully.  I've been spending more time at the computer doing family "stuff" and work related "stuff."  Scheduled to go back to work 4/22 (6 weeks)...  not sure what I will be wearing but yoga pants and big loose tops!

    For sleeping - I have slept in my bed the whole time.  I did put a step-stool next to the bed because I have a high bed.  I have a wedge pillow behind me, with 2 big fluffy pillows on top of it.  I put a couch pillow under my knees, which I just took out yesterday so I'm more "flat" but my top half is still raised.  At least this way I can turn side to side more.  I also have two smaller pillows (of the Sabakawa variety) at my sides, which I rest my arms on or curl around sideways.

    Along with My Fitness Pal -I recommend RxRemindMe for medicine reminders!  You can set it for however many meds and at whatever intervals you need.  You can set the alarm sound, too.  It will not "un-silence" your phone, however, so you have to leave your phone in ringer mode.  If it is silenced, it will vibrate at least.  I am down to Tylenol a couple times a day only, along with the aspirin regimin prescribed.  (1.5 low dose per day.)  At night, I do 1 Tylenol PM, and 1 regular.  Otherwise I have a hard time waking up in the morning.

    I just sent Robin a text (we connected by phone last week since we have the same hospital) and was shocked to get a quick response!  She is still in ICU now and a little sore.  No surprise there.

    Faith - hoping all went well at your appointment!

    Janet - I hope you get the answers you need without having to Kathy Bates anyone....!  If you really like your surgeons, perhaps an option is to break up the surgery... not fabulous, I know.  I had my Mx back in July and they placed tissue expanders, because I did not know yet if I was having the rads.  Of course, you do need a PS for the expander placement.  I don't know if something like that would work in your scenario - but wanted to mention it.

    "See" ya' later, ladies!  Nap time before my 11 yr old DD comes home from drama rehearsal.  The concussion child is already back in bed, "cocooning" ...

    Smile Jeannie

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  • HHCats
    HHCats Member Posts: 121
    edited April 2013

    Hey everyone - I just found out that I will join the club on Monday, April 22.  That is my official surgery date.  Now if I can just calm my nerves . . . all will be well.

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited April 2013

    HHCats, let me know how the nerve calming thing works out.  I'd be interested in your technique!

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  • kuka21174923
    kuka21174923 Member Posts: 427
    edited April 2013

    HHCats you're just a day ahead of me!! Yay!

    My husband really wants to get a recliner, but I think it's more for him than anything. I believe that I would be ok with a step by my bed and a bunch of pillows. I'm also afraid that I would want to spend all of my time on the recliner watching tv instead of walking around trying to get my strength back. I will ask my PS on the 17th when I go see him.

    Robin I'm glad that everything went good and that you soreness subsides soon.

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  • faith729
    faith729 Member Posts: 244
    edited April 2013

    Hey all I was only away for the better part of the day and already there is tons to catch up on ...that's great !!!



    Well my PS was in surgery most of the morning however he took pics post surgery for my file before I left the hospital so I asked his assistant if I could send a pic of the area I was worried about via email thus saving us a trip into Boston and saving him valuable time with his new patient. I explained that the only thing I was concerned about was the redness and was otherwise feeling pretty great. He took a look at my pic and said that he was SK glad I had saved myself the trip because the area looked fine and compared well to my post op pic. I must have been to groggy to really notice what the new girls looked like last week.



    Nihahi I have found that like a few of the other girls mentioned staying ahead of the pain is the best way. The problem is if I go too far past me med time (over an hr) the next two doses feel as though I'm playing catch up. I try to be mindful of the risk of getting addicted to the meds and sometimes during the day I will see if I can go a little longer between doses nothing major maybe 30 minutes to an hour if I'm still feeling great. On Thursday when I go to have some drains removed I will talk to my PS about weaning.But nothing is worse than getting out of bed after sleeping way past the time. Hope your hanging in there and that all this busy work is good distraction for you.

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  • fredntan
    fredntan Member Posts: 1,821
    edited April 2013

    No worries Faith about being a addict, my momma said there is real good place in georgia she will send me if I get addicted



    Xanax girls xanax

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