DIEP 2013

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2013

    Hey, Americans, if you are interested, there is a lymphedema treatment act going before Congress. It is to enact a law to require compression garments be covered by Medicare and other plans. Go to this link and they make it very easy to contact your rep with your own or their form letter. http://www.capwiz.com/lymphedematreatmentact/home/

    Thanks, friends!

  • goldie4040
    goldie4040 Member Posts: 2,280
    edited October 2013


    Thanks for the link, Bailey. It's important this gets passed through Congress.


    Lahela, I sure hope you can wait till after the holidays.


    Janet, when you are finished with you expensive holistic cream you could try aquaphor instead of vaseline. It's a little less greasy. We even use it on the kids cheeks during the cold weather to keep them from getting chapped. My oldest grandson is lucky he lives in Texas, because if this "coolish" weather and slight wind chaps his little cheeks I hate to think what a real winter would do to him.

  • FierceBluebird
    FierceBluebird Member Posts: 758
    edited October 2013


    Awesome Bailey!


    Janet, I also have had good success with the massage technique. I even had some squared off incision edges disappear with consistent deep massage. I use Aquaphor at night or "Tummy Butter" cocoa cream and a goat's milk cream in the morning.


    I too have a serious reaction to tape. I've had tape pull my skin off when it was removed! I've tried soaking it, coating it with oily creams, nothing worked. I've tried every known brand. The best bet is a paper tape. Then I take the "tackiness" away by sticking it to my hand a few times to make it less sticky. But after three months of an open incision, my skin had it with all tape. I started wearing inexpensive tube tops or bandeau bras to hold pads and bandages in place. It gave my skin a chance to heal. The bra area drain holes can be very painful when rubbed, so having a large stretchy tube top helped.

  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited October 2013


    Ok, I just realized I sound like a broken record about my lack of boob symmetry! I am convinced it is something that is really bothering me and needs to be addressed at my appt. next week.

  • lahela
    lahela Member Posts: 515
    edited October 2013


    Jeannie, could there still be some swelling on one side? Did they do more on one side than the other? Maybe it just needs time to settle. If not, I hope they can even you out - you deserve to feel good in your boobs!

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


    Not a broken record at all jeannie.....your "messages" have just been a way of revealing your true feelings and sometimes it's a process to sort things out! It's a real challenge to find the "sweet spot" that signals the difference between the "I'm done" frustrated and tired mindset with the "its time to move on" decision because I know I'm content with what I have feelings. We all are going to reach that milestone for different reasons, and at different times.

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


    Moderators wrote:


    The Breastcancer.org Rock the Ribbon fundraiser last Thursday was an enormous success. We had a fabulous, diverse attendance and so many positive comments about our amazing community of individuals. They were clearly touched by the images,the reach, and the powerful words, and we thank you for sharing them with us!! It helped bring YOU to our evening. Thank you, thank you!!!

    Hugs from the BCO Team

  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited October 2013


    Thanks, Nihahi and Lahela. The PS was supposed to add enough fat to the smaller girl to make them the same volume. Didn't happen. The size discrepancy is more obvious after stage II than DIEP. I know he opened them both up and did something in both...he did break up the fat necrosis in miss biggie. I know I have a really good PS. He just didn't make it all happen...yet. Having said that, my dog ear is gone, as well as the side muffin top. I still consider it a miracle that I have soft boobs and a flat abdomen! I just don't know if I can face the OR again, put my DH through more, wear compression again. I invite you in my pockets next Monday morning for my post-op appt.!

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


    aw jeannie....no need to "invite"....your pockets are already full of us all! As lahela wrote....size difference could also be due to swelling, if he was rummaging around inside again! Someone with compression experience may have a better idea....does wearing compression that starts just under the boobs, make the post-op boob swelling a bit slower to resolve????? You could be more "balanced" than it looks at the moment, once the swelling goes down. (maybe????). I'm sure your hubby wants you to be happy....though I totally get the "putting him through more" emotions too. Sounds like you are liking the new tummy, though, which is WONDERFUL!!!!


    I do understand the financial burden of you gals in the States in trying to get things "done" within a certain time frame.....I so wish that extra stress was not part of the journey for you. From my personal experience....I believe that sticking with the "fandango" until you have reached your personal "Done"ness....whatever that entails, is worth it. There is a long, rich life awaiting us all after this year of surgeries, hospitalization, recoveries, stages, etc....it is so worth it to be able to "move on" from a place of happiness and peace, than to carry forward in life, a sense of disappointment or feelings of being "unfinished".

  • christina0001
    christina0001 Member Posts: 1,491
    edited October 2013


    mrtw - wow, you got nipples already! I am so jealous!!! I bet they will look great.


    Jeannie, I am so sorry that you are not symmetrical after all this. That must be so disappointing. I can totally relate dreading more surgery but perhaps after a little time passes, it might seem more worthwhile, if you are not happy with your results at this point. *sigh* Seems like this drags on and on...


    So excited about my stage 2 Friday! !!!

  • FierceBluebird
    FierceBluebird Member Posts: 758
    edited October 2013


    Jeannie, I think I've given up trying to find my happiness with flaps. After losing one, and have more scar tissue than with a normal mastectomy and the other flap that is left has been pretty hideous from the beginning. I was a DD before surgery and asked for a reduction to a full C. The flap I have left is a misshapen "B". It's more oval than round and I know the side boobage and shape can be fixed later, but how much will actually be left after they lipo? It's been a frustrating journey for me all around.


    On other forums you can see women who have surgery after surgery until they are happy. I just don't have it in me! I wish I could just go to NOLA and have a miracle done. But I know there are no easy fixes. My hats off to all the women who stick with it.

  • goldie4040
    goldie4040 Member Posts: 2,280
    edited October 2013


    Jeannie


    Keep looking at your perfect tummy, and remember you PS did that, and he will make good on the foobs too!!!! It will all come together, and I have a really good feeling that your DH is not going to mind at all.

  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited October 2013


    Oh, Bluebird, you have been through it! You have my compassion. I wish I could do something for you! Believe me, I am grateful that I have two new "boobs." I haven't been too concerned with what I would end up with until now. We'll see what the PS says. If he didn't fix it after the original and stage II, do I really want him to try again? I hope there is more swelling on the left than right and it will even up some, but not confident. I will go on to lead a good life, irrespective of what happens, I am confident of that.

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


    Nihahi, you're right about sticking with the fandango until we're "finished," whatever that means to each of us. I was thrilled when our 2014 insurance details came this month--our deductible and out-of-pocket maximums haven't gone up for next year, but I know many of us are worried about what our insurance is going to look like soon. For ME, as long as I don't have to miss too much work, I really don't care about another surgery to get things right. After what we've been through, what's one more? Be hungry and thirsty for a morning, show up at the surgery center on time, go to sleep, wake up, go home. Get the DH to bring tea. Admire the new construction.


    I just want to be sure I know when to quit. My breasts and tummy weren't perfect before BC. They sure aren't perfect now. Will I sense it when enough is enough?

  • FierceBluebird
    FierceBluebird Member Posts: 758
    edited October 2013


    Wow. If only it were that easy. Go to sleep. Wake up. Admire new breasts. No pain, no infections, no complications, no anesthesia risk. I guess this is why I'll never learn the Fandango. I can't dance at all and can only do the Frankenstein shuffle. But I'm lucky in many other ways and count my blessings that I'm still here.


    As I said, my hats off to those who do well and end up happy with their results. It is a long road for everyone. This experience is certainly a test of resiliency. I truly admire strength and willingness to jump back up on the horse!

  • goldie4040
    goldie4040 Member Posts: 2,280
    edited October 2013


    SBE, this is a little off topic, but you mentioned you hope you know when to stop. I have a friend who has become addicted to having procedures done to her face. As soon as one heals, she has another one done. It's almost like she never really wants to be completely healed, and have to look at what she really looks like. Lasers, peels, eye lifts, fillers, etc. It's getting really scary. You, on the other hand, will know when it's done. I am sure of that.

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


    Bluebird, I'm so sorry. I was flippant and I apologize. Yeah, I hear you--it's certainly not that easy, and I've had my own share of "oh, crap, what's next" days.


    Maybe I'm just trying to get some perspective on my own fandango. After ALL of this--lumpectomy, chemo, mastectomy, radiation, DIEP, cellulitis, more surgery--I'm hoping I'm on the home stretch, and the worst of it is behind me. One more short surgery doesn't seem a very tall hurdle at this point.


    Nevertheless, my post was insensitive, and I wouldn't hurt your feelings for anything. You're right in the middle of the storm, and it's a wretched place to be. Sorry.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2013

    I think that where you are on "the road" and what is already behind you, and how far behind you, and the bumps and disturbs, and what still lies ahead (that is known) all factors into how you feel about the next "thing" as well. We are all different.

    I know that had you talked to me after chemo, mastectomy, rads, hyster/oopherectomy and a year of Herceptin I would have said no way in bloody hell is anybody else coming at me with so much as a blood pressure cuff. I still wanted recon, but not right then. 

    Right now I want to full steam ahead, but I didn't feel that way when we first scheduled stage II...took me a few weeks. We all have our own pace. 

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


    Some deep, heartfelt thoughts today. I love how we have found respect and acceptance for our similarities and our differences on this thread. As "common" as our bond is, we still are very much individuals. I think most of us had a similar sense of "loss" from breast mx or we wouldn't have been on the "flapper express" in the first place. But we each had different paths through dx, tx, sx, complications, timelines, and life in general. We each place different "values" on what results we ultimately need to feel "reconstructed", and where we need to "be" to be able to move on physically and emotionally. For each of us, I believe there is a point where surgical intervention yields diminishing returns in our emotional and physical health and happiness. even in our ability to "move on". But that point is different for each and everyone of us. My personal view is that pursuit of "physical perfection" is a pretty futile task, as life seems to have a way of "levelling things out" in the big picture. That doesn't mean I feel the best attitude is to "settle" (as some people term it) for results that are unsatisfactory or make us unhappy, it means we each have to figure out how connected our happiness/health is to what surgery can do for us. The best thing we can do for ourselves, is to "listen" to our inner voice, and be true to ourselves. Not sure if I'm finding the right words to say what I mean......

  • lahela
    lahela Member Posts: 515
    edited October 2013


    Jeannie - no need to invite, we're already there.



    Christina - we will be in your pocket too on Friday! So excited for you!



    Bluebird - you have been through an absolute nightmare and it brings tears to my eyes every time I think of what this journey has thrown at you. Not helpful to you, I know, but I just wanted to let you know you're in my heart. I hope you find comfort one day not far away.



    Nihahi, as always, you found the perfect words.



    My "enough" will be when I look good in clothes. I want the side muffin tops gone because I didn't have them before, I want the dogear gone because it rubs on jeans (oh, to be able to wear jeans again!) and I want my noobs to sit right. They are uneven, but then so were my natural boobs, and I still have swelling from the abscess so I can't really judge leftie yet, but probably a bit of reduction required for evenness. I want to be able to put on a one-piece swimsuit and not see scars. Which leads me to...



    The thing that bothers me most is that they look awful in a soft-cupped bra because it bunches in the front where the flat circles are and I am having a hell of a time finding a shaped-cup bra that these girls actually sit properly in. I went shopping on Saturday and must have tried on 30 bras, not one of which fit properly. Problem is, I don't want the additional scarring of thigh skin grafts and my PS says "you need the projection and that's the procedure we do here" for nipple recon... So I feel like I'm going to have to "settle". And spend the rest of my life trying to find bras and swimsuits that hide the no-nipple thing.

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


    Good Morning -


    Nihahi - Well said.


    My 'enough' will be when I get dressed without having to accommodate the physical side-effects of surgery. Right now I can wear anythjng I want on top, and for that I am so grateful. I feel like me again (sans nipples). But I still have to wear jeans that fit under my 'dog ears'. So I have a wardrobe of stretchy jeans with wide waistbands and unless I'm wearing a blouse, I often wear a cardigan to disguise my spongebob square pants corners. I feel pretty shallow talking about this - but it's not about looking good, as much as it is feeling comfortable in my own skin, and not having constant reminders.


    I haven't decided on my stage 2 yet, but goal is to put on my clothes and get out the door without thinking about surgery, and BC, and lymphedema. Like Bailey said - there was a time where I didn't want anyone in doctor's clothes coming anywhere near me. But now I'm feeling like 'let's get er done!' I want nipples and a waist.


    Goldie -It's so interesting what you said about your friend. 'She never wants to heal and see what she looks like'. I love your insights. But luckily - I don't think any of us fall into that category. Comfort, health, and symmetry seem to be what we're all after. The very things that we were born with. Our personal goals and road maps may be different but I think most of us gals just want a full, healthy life and will know when it is 'enough'.

  • FierceBluebird
    FierceBluebird Member Posts: 758
    edited October 2013

    I know no one here would ever try to hurt feelings. You are all so special to me and are so supportive. And we are all different and have different experiences. That's why I come here for advice and support instead of a complication forum. I'd rather stick to hearing about positive experiences. It keeps me focused that despite setbacks, others have acceptable outcomes. 

    But like Goldie, I've also seen women who have surgery after surgery to get things "just right". I'm not talking about stage 'll or fixing of dog ears or lumps and bumps but women who never seem happy and go for more and more Lipo or adjustments.  

    After my last surgery when I woke up from anesthesia in full strider unable to breathe and the anesthesia team panicking, it hit home that there are serious risks from any surgery  including death and infections that could take away everything. I've since talked to another woman in radiation who had to have her beautiful flap removed so they could get at a cancer that returned. We all just want to feel and look "normal. But I tell myself to remember the true journey I'm on is to be cancer free. Anything they do to put humpty dumpty back together again is just a bonus for me. 

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


    feeling comfortable in my own skin, and not having constant reminders.


    Janet......exactly!!!!!!! 11 simple words to express perfectly how I feel!!!!! You are like our poet laureate!!!!! btw....I don't believe there is a "shallow cell" in your body....you just want to normalize as much of the surgical aftermath as possible, nothing wrong with that at all.


    I actually feel sad for women (not just bc women either), who feel convinced they need to pursue "perfection" to find happiness. If I needed to be physically perfect to live my life....I never would have left the cradle. A "perfect" body has never played a part in helping me stand on a mountain top, ski along a trail, laugh with my friends or appreciate a beautiful flower.


    I intend to spend today being thankful for what I have......caring for myself as best as I can......and sending love to every single one of you!


    Have GREAT DAYS LADIES!!!!!!


    edited to add:


    bluebird....cyber crossing posts....you are probably one of the more "balanced" ladies on this thread.....I hope you do find some understanding and support here...your journey has been truly epic, and your spirit and "perspective" are serving you well for this fandango. I hope you come spend time with some of us on the Moving On thread....where the intent IS to leave the "flap talk" in the rear view mirror, and look ahead to life beyond bc and recon. ((((((X))))))





  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited October 2013


    Buebird, so true. I'm so glad you are sticking with us! And Janet, I hear you. How can I not be reminded of bc every morning when I have to do lymph drainage massage and put on sleeves/gauntlets? Having boobs again helps to feel "normal" but it really all is about beating cancer into a pulp and throwing it down the disposal.


    Lahela, sorry about your bra/nipple frustration! I wouldn't want thigh scars, either! Jeesh. I have two bras that don't fit that well, besides my assortment of stretchy bras that I don't want to wear anymore. When can we wear underwire again? Only because pretty wireless bras seem few and far between.


    I woke up so happy today, having slept without compression! Time to put on all my armor again, though.

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


    Deb.....I know it doesn't feel like it, but 10 weeks post surgery is really a "drop in the bucket" of recovery time. My recon breast has significantly changed (for the better) over these 6 months post surgery. I understand your "comparison" of the natural breast with your recon, as I am a uni also, and comparing is a normal thing. I hope you find more symmetry by the end of your recon stages. I am going to definitely go for the surgical nipple recon with tattoo.....I spent over 20 years with the single nipple look....I KNOW that for me, I want to have two again, even if the recon one isn't perfect, it'll be another "reminder" to no longer have to climb over, each time I undress.

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


    Nihahi - Actually, I do have a few shallow cells in my body. Took photos of my flat stomach this morning (clothed) and emailed all my fifty year old girlfriends to ask if anyone wanted to got to Pilates. I can't do sit-ups yet, but my stomach sure looks great.


    Bluebird - Frankenstein Shuffle. At first I laughed, but then I thought you might you might actually believe that there's truth to that. So I just wanted to say that you have a lot of admiration on these boards for you grace and courage.

  • faith729
    faith729 Member Posts: 244
    edited October 2013

    Hi all I hope you are willing to welcome me back after all this time :-/

    I would love to promise that I'll catch up on reading all of your wonderful posts but the reality is that there isn't enough time in the world :) 

    After my thyroid cancer diagnosis in August    ( specific type is follicular carcinoma) I made the decision not to let it take over so much of my life this time. So I decided to continue with school and work etc. I had met with a couple of surgeons and was really glad I didn't settle on the first one because the second surgeon was fantastic. On September 24th I had a total thyroidectomy and they removed some lymph nodes to test as well. I recovered really well but learned the next day that the cancer had spread to the lymph nodes. 

    So now it's just the waiting game that we are all too familiar with right ? I have to wait 6 weeks at that point they will check my tsh levels then they will take me off my meds for 6 weeks and put me on a low iodine diet for 3 weeks and schedule a radioactive iodine scan to see if its gone anywhere else. Keeping my chin up 

    Hope all is well ladies !

  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited October 2013


    Faith, it's so good to hear from you again! I certainly understand why you were away. We all strive for some kind of normalcy in this abnormal situation. I am sorry you are facing such a long, drawn out challenge, though. Life is just not fair but it seems some of us, like you, are called upon to bear an extra amount of crap, excuse my French. I will be praying for you, you can count on it.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2013

    Debdylan....So glad you posted. I was thinking of you last night as I was drifting off to sleep. I've not been to the picture forum. I am guessing that what you are seeing there is finished product? Idk....just a guess. If so, TOTALLY not fair to compare stage one results to "stage done" results.

    I have no love for my noob yet. It is way too large, it is pointing "to the left, to the left" (a la Beyonce lol), it's lumpy, bumpy, hard and painful. I hate where the worst of my stretch marks from my belly ended up. BUT.....the point, the goal,  of stage I was to move the tissue and make it live.....SCORE! We did that. So it was very successful. It was pure surgery.....no artistry. Next time I will get some artistry with the redo of my scars, tummy contouring, moving and reduction of the noob, etc. 

    And what Nihahi said....10 weeks is not much time. I had burger bun on the lifted side ....it's gone now.

    Faith! So happy you "checked in". You are always welcome here, for as long as you want to stay. I am sorry to hear about the nodes :( and the waiting. Living your life through it all is the right thing to do, imho. (((((((((((Faith)))))))))))) you remain in my prayers, sister.

  • Morningsun1
    Morningsun1 Member Posts: 649
    edited October 2013


    Good to "see" you back here, faith. (((((faith)))))

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