DIEP 2013

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


    Anybody hear from SSLA in a while? Wasn't she one of the gals that had an SGAP at Nola?

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


    I think you'll be happier with that choice butterfly.....I chose to use my energy for "being up", not "getting up"....and I liked the little bit more independence it gave me, when I felt so very "dependent" in the early days of being home. I didn't need it very long, but was VERY glad I had it. After about 2 weeks, I didn't need it for sleeping, as I had moved back to my regular bed, with just a normal pillow behind my head. But, I still used it during the day for another week to nap/rest in. The last week I had it, it basically was a clothes hanger for my bathrobe!!! When it went out the door, it felt like a really major sign of progress, and reinforced to my own mind, how far I had come, from the day I came home.

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


    Just an FYI.....I have just sent my photo, info and quote to Melissa. I hope many of you do the same. This site has been so helpful for so many of us.....I believe in "paying it forward"....To me....this has more meaning, awareness and actual "support" than anything else in "Pinktober". (nihahi)


    Oct 8, 2013 10:55am Moderators wrote:


    Excuse me breaking in here, but we are looking to show your faces, names and quotes at our fundraising event in October (www.rockforbreastcancer.org), and would love your help. This event is one of our largest fundraisers of the year and we'll be joined by hundreds of generous donors.


    Specifically, we will have two projector screens up during the event, and want to show the people attending the event YOUR faces--- the women of our community, the women who use and rely on BCO ! Having the opportunity to share your photos and quotes that night will reinforce to our donors, in a meaningful and personal way, just how vitally important their contributions are to our community.


    For this, we are looking for people willing to share a photo of themselves (either alone or with family, friends, pets, other BCO members, etc.), allow us to use your first name, say where you are from (it can be from anywhere in the world!), and give us a quote on how important BCO is to you. We are looking to have at least 40 people and have (only) a few weeks to work on this.


    If you are interested, could you please email Melissa at mjenkins@breastcancer.org, with your photo, first name, where you live, and your quote? Also, PM us if you have any questions!


    Thank you, thank you, thank you for helping us!!


    Melissa

  • Cherrie
    Cherrie Member Posts: 1,423
    edited October 2013


    I lived in my recliner,(8 weeks) but DH had to do the lever for me. A lift would give independence but pay to have the comfy ones.

  • Zenful
    Zenful Member Posts: 599
    edited October 2013


    It took me years to get rid of the recliner from our family room, which I affectionately referred to as the "BFC" (big f-ing chair), but my son transported it back from his house and it was waiting for me when I arrived home from my surgery. It's like sleeping in a big green leather cloud! and I have to say, I fully understand why my husband was so attached to it. He's already hinted at keeping it. Well, maybe through Stage 2...

  • Carmelle_in_CT
    Carmelle_in_CT Member Posts: 26
    edited October 2013


    Hi everybody,


    I try to stay up with everybody's posts but by the time I finish reading everything I'm too exhausted to write anything - so today I am!! Two weeks past surgery as of yesterday. All seems to be going well - at least that's what the doc's say. I have a blister on my breast that i have to dress with silvadene everyday - i guess caused by skin that had been previously radiated. Other than that doc's seem happy. Sure hope the boob looks better someday.. I go to get fitted for a 'special' diep bra next week that supposedly helps to form it correctly - we'll see. All in all I feel extremely fortunate after looking at what a lot of you have been thru. I'm doing so much better than that first horrible week (mostly due to the anethesia I believe). I did not get a lift chair or hospital chair - I do love my wedge pillow that I borrowed from my neighbor, that and the shower chair are really the only two special things that I got. Good luck to all just starting out - I have to say I thought I was prepared for this surgery but it did send me for a loop!! But, like I said things are only getting better every day. Sending positive vibes to all..

  • lahela
    lahela Member Posts: 515
    edited October 2013


    Carmelle - great to hear you are healing so well. You sound really positive :)


    My noob is on the mend too - they decided the second abscess is an extension of the first one, so no new openings. Next lavage on Friday. The only low point today was that the paper tape took lots of skin off with it from my chest under the noob. That had only happened with the heavy post surgical tape before, but too much tape of any kind is obviously a bad thing. Ouch!


    Nihahi, I sent my photo etc to Melissa today, too.

  • Kat-ski
    Kat-ski Member Posts: 212
    edited October 2013


    I sent my picture to Melissa also. I found the book by Kathy Steligo through our Kent County Library. I ordered it through MelCat and the book came all the way from the East of Michigan by Frankenmuth. Wow. I have three weeks to get it read. It is amazing you can borrow from other counties.


    Healing prayers to all. Kat

  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited October 2013
    I sent my photo in, too--about six of them! Some with hair, some bald, some on the bike. I let her take her pick.
  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2013


    I sent my info in, too. I am sitting in the pedicure chair (gotta get me some Vegas toes!) and all is right with the world!

  • Kat-ski
    Kat-ski Member Posts: 212
    edited October 2013


    Sometimes we have to reach out to "cyberspace"! I would have really gone "crazy" by now if I had to stay the way I look now. Gosh, this isn't easy for anyone of us to put our bodies through these changes. At least I can take all of my "hot looking guys" off my mirrors next year and just smile at me again. That is not vain, it is being realistic to what we want for ourselves. I love you all here!

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


    WHOA I am so behind!


    Curlylocks - wow, your poor mom! And poor you, I can't imagine the stress. I'm glad she is improving. Your DH sounds like such a sweetie.


    kimdy - love the anti-pinktober post. Thought about copying and pasting it to my facebook page but I won't. I don't want to hurt people's feelings but I agree with so much of what you said. October 2nd a friend gave me a cute little pink bead ring for "breast cancer awareness." HELLO my dear, I am VERY aware... but I know she meant to be kind.


    lahela - sounds like your PS is on the ball. I'm sure it's a pain to see his NP every day but hopefully it will be worth it in the long run.


    momof5kids, sorry to read the crushing news. I'm sure the PS you consulted with was very good, but would it help to get a second opinion, if a flap is what you most desire? If not, or if that does not work out, are implants an option?


    sweetpickle, that is so frustrating! Sounds like your PS's office is not too savvy on lymphedema. Glad your MO was able to help you. If it's any consolation, my MO's staff had no clue what to make of my cording. If it were not for this website, it would have been untreated! Fortunately I shared the information I found here and eventually got sent to an occupational therapist who was certified in lymph issues or whatever. It is really shocking how professionals in the field don't know this stuff.


    jakig - you know, maybe your friend is right but it sort of annoys me that she would throw your PS under the bus like that. I too would be frustrated if I was significantly unsymmetrical after my stage 2, but it (unfortunately) does not seem unheard of to need more revisions after stage 2. If you feel your PS is not doing a good job, then by all means have a consult with someone else. But if you feel comfortable with him or her, definitely go back and see what he or she says. A good PS will see your concerns and be motivated to ensure you get great results by the end.


    aspinner - love the red hair! Love it love it!


    Debdylan - your sister clearly does not "get it." Lucky her. Maybe she'll get it now! Does she think she is being supportive by downplaying your concerns about hair and reconstruction? Tell you what, I had no clue how much my hair and breasts meant to me until they were gone!


    All is well here, just excited and counting down to stage 2. It's three weeks from Friday. Thanks for the feedback (forget who posted it now) on whether the PS could target where she removed fat from.

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


    DebDylan, so sorry about your sister's response. I guess people will never understand what we go through until they go through it themselves. If you lose a body part, it's normal to want to replace it! Reminds me of a dear friend who said, after we discussed my recon. surgery, "It's what's inside that counts, anyway." They just don't get it. I don't want to become over-sensitive about this stuff but it's hard. Deb, you go ahead and rock your wig and hat and keep believing that you are going to look good after all this! It's perfectly okay to complain here. We understand better than anyone.


    Christina, you sound good! I'll be in my post-surgery compression when you go for yours!

  • mammalou
    mammalou Member Posts: 823
    edited October 2013


    cyber crazy here! Hang in there deblynn. It is unfortunate that your sis doesn't get it. I think they think they are telling us that we are still ok even with all the shitala they have done to us. I have decided just not to discuss with too many people, because it is hurtful when they say things like that.


    My tummy scar is getting darker too. Is it a bio oil thing? I am finally feeling like my tummy is flatter and I like it!

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


    Camllle, glad you are doing so well two weeks out. The blister is a fairly normal occurrence. Quite a few women get them. There are different theories. Some believe it could be surgical tape reactions, etc. They usually heal nicely, but more slowly than most would like.


    Mammolou,,,Yeah to the flatter tummy. You deserve it!!!!!


    Bailey, nothing like a pedicure to make you feel ready for any occasion. Hope you have a great time!


    Lahela, what a relief that you're on the mend.

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


    Well. It's probably a given that we are "crazies in cyberspace" lol but assure your sister, Debdylan, that we are all completely REAL. (Wilbur, on the other hand, is not).


    Not all women get recon. I think I read the other day it's 1 in 4??? So. Some women flat out don't want it. (Omg.....did you catch that there??? I wasn't even trying to be funny). Some women aren't made aware or do not understand their options. Some women cannot afford it (deductibles and copays, etc) or cannot afford to be off work for surgery and recovery. And for a large number of other reasons. And one in four do it. And our reasons are as many, I am sure. Some of those reasons are cosmetic....but that's not a bad thing. Wanting to look "normal" is not vain. Most people desire to look "normal"....to blend in, so to speak. Many women have a hard time seeing their chest everyday with mx scars. Prosthetic breasts are/were not much fun for many of us and we didn't want to deal with them for the rest of our long lives.


    Ha! I just realized I am preaching to the choir, aren't I? Lol....


    I am sorry you had a dust up with your sister, Debdylan, but you did the right thing for you. Stand tall. (And make up with your sister :) Stupid disease takes enough from us). Love you, in a cyber crazy kind of way :)


    I can't keep up what with the trip preparations....but reading and thinking of you all! Gnite!

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


    This is a must see, and there is a petition out there to get this drug pushed through quicker.

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


    http://www.youtube.com/watch?v=86UXmVy1NaA


    This is a must watch, and there is a petition out there to get the drug pushed through sooner. It could mean a lot for any of us concerned about recurrence.

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


    Personally, I take great pride in being "crazy"....it's an art form!!!!


    Looks like a lot of us have sent in photos/quotes to the mods as requested....That would be one AMAZING slide show!!!!!!

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


    Did I miss something earlier today, about a special "flap shaping bra"??????

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


    Goldie, bring it on. I just pray there aren't enormous delays with FDA approving clinical trials and getting it on the market. It also better not prevent BC recurrence but cause fatal blood clots or something nasty like that. Anyone know what the generic name of this medication might be?


    I was in a clinical trial with denosumab (Prolia, Xgeva) at the very beginning of my treatment, but they kicked me out of the study when I convinced them to give me more chemo using different drugs. The concept had nothing to do with destroying estrogen receptors. They were researching to see if this bisphosphonate medication could harden the bones and make them less hospitable to metastatic BC.


    I got the wound vac un-vac'ed today! Yay! Now just three more days of IV ancef, and a few more days of tolerating the PICC line, and I'll be back in business. The hole under my right noob is still deep enough that the home nurse will visit me (at my office...lol) and dress it with a special moist dressing that incorporates silver for its antiseptic effects.


    Bailey, it's true that some women just don't want recon, for a variety of reasons. My MOM loves being flat, even; she finds it cooler, less fuss, and more comfortable to dress without the need for a bra. For me, though, every time I stuffed that 2-pound silicone ham into my bra, or realized I had a closet full of shirts I couldn't wear because their necklines came below my collarbones, or looked in the mirror at that lumpy, burned, hideous scar on my chest...well, recon has given me back a sense of wholeness. This isn't vanity. It's recovery. It's healing.

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


    yup, Sbel, I agree....I hated the prostheses....it rubbed on my rads scars and caused me pain and floated around and shifted and drove me nuts. Bathing suit was a joke. Same with vnecks...and I love a vneck. First thing I did when I got in the car was pull it out and fling it into the back seat lol! And don't even get me started on the experience of the days/times I got half way, or ALL the way somewhere and realized I FORGOT it! Uniboob.....great.


    I feel better with my recon.....better in every way.

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


    I sent my "two cents" in, too!


    I never thought I would have cyber-friends.....I think you're all cyber-terrific!!!

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


    There is a link on Facebook to sign a petition to get the drug pushed through sooner, but I can't seem to copy the link to post it here. I will keep trying. If we could get BCO to actively promote signing the petition it would be so great!!!! And, I believe a powerful message to the FDA. For goodness sakes, why is Europe always ahead of us. I remember watching a documentary about Farrah Fawcett's cancer journey, and she travelled all the way to Germany for drugs that were working there, but she couldn't get treatment with them in the U.S.

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


    Tell me having weak bones doesn't make one more susceptible to recurrence.....they aren't weak enough for drugs yet, apparently.


    Yay, Sbel!


    My 87 year old mom tells me all the time that she wishes she had reconstruction. She felt all decisions were made for her. :(

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


    yeah..what is a flap shaping bra??? Interesting. Idk if there is strong enough elastic in the wide, wide world to encourage my noob to do anything but her own thing! Taped up and over and double sports bras and its still in my way!

  • Dyvgrl
    Dyvgrl Member Posts: 471
    edited October 2013


    http://www.medicalnewstoday.com/articles/262039.php


    Bazedoxifene is the name of the drug, sold as Conbriza for osteoporosis. Wonder if you could get a doc to prescribe it for osteo issues??

  • lahela
    lahela Member Posts: 515
    edited October 2013


    Deb - big hugs to you! I'm so sorry your sister doesn't understand where you are coming from in all this. I'm sure she means well but doesn't understand. You are not going through all this because you are vain, you are doing it to feel good about yourself. Big, big, big difference.


    mammalou, sbe - it is wonderful to hear that you are healing.


    Goldie - thanks for the link to the petition. I'll pass it on.


    Love and hugs to all the cybercrazies!

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


    bailey....love the new "quote".

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