DIEP 2013

sbelizabeth

Jeannie, so glad your knee's boo-boo is healing up.  Road rash takes SO LONG to fill in!  Keep the Brave Soldier around for other ouchies, just don't crash your bike again.

The talk is the goal for this weekend.  I'm going to pull everyone's comments about "what I would share about breast cancer" and begin an outline.  This is going to be a work of love, dedicated to all of you, and everyone in my world who held me up through this fandango.

The newspaper project will be finished with an article on October 1.  For the last two years, beginning with the initial biopsy, my friends the reporter and photographer have been present for all things breast cancer-ish, including in the operating rooms for all the surgeries.  This last article will focus on the emerging back into wholeness after everything we've endured over the last two years.  I'll be sure to post a link to the article for all of you, who have been a huge part of recovery. 

Pattysmiles

Thanks Bailey for the link!



I ordered manuka too! Must be a run on it!...prices will rise. The manufacturer will think we are all feeding .wilbur!



Pat

Jeannie57

Sbel, I didn't realize the newspaper (and community) have been following your story this whole time! Wowza! That is so cool! I'm sure they have seen the truth of bc portrayed with honesty and maybe your great humor, too. I look forward to reading it and I'm so glad you are doing well. My bc story started two years ago this January so I can relate.

Janet_M

Jeez- how is it that Aubrey gets to go swimming and I don"t?, I'd give anything just to be wet and weightless for a few moments. I wouldn't be nearly as cute as a baby, but still...



As far as pre-surgery excercises, square are fantastic. Leg muscles were all I had for the first few weeks. Planks were good too, for a full body strengthening exercise.

Jeannie57

Janet, planks aren't recommended for those of us with lymphedema. You can always try and see what happens, though. My LE therapist gave me all the do's and don't s but said I could experiment if I want to. Still avoiding BP and needle sticks, though!

sbelizabeth

http://www.vcstar.com/news/2011/oct/29/a-nurses-journey-a-nurse-shares-her-biopsy-to/

http://www.vcstar.com/news/2011/nov/29/part-ii-of-nurses-journey-trauma-nurse-shares/

http://www.vcstar.com/news/2012/apr/10/trauma-nurse-continues-to-fight-cancer-like-a/

http://www.vcstar.com/news/2012/jun/08/simi-valley-trauma-nurse-determined-to-win/

For our sisters who've been on this thread for a long time, you've already seen these--I'm posting for our new ones.  The reporter, Kim Lamb Gregory, is an old high school friend and we put this together to de-mystify breast cancer and enhance understanding of what breast cancer involves.  I didn't know, in the beginning, what a rodeo this was going to be!  Anyway, I didn't set out to be the BC poster child, and I've tried to keep it firmly in mind that this "is not about me."  As a nurse, this felt like a compassionate thing to do.

My son said, "Mom, when this is over, how will you feel when you don't have a reporter and photographer following you around?"  LOL...I'll feel GREAT!

kathyb1

hi my name is kathy, I just had tram flap reconstruction, on 6/12/13 which my dp recommended.  He should of gone over the surgery explicitly but of course he's an important man and me, i guess i'm not.  I've had two drs. tell me i was to thin for this surgery but he said they didn't know what they were talkiing about i'd be fine. well i woke up to being cut from hip to hip, mini tummy tuck yea right i'd like to know what he thinks LARGE is!!!! my belly button was moved, never told me that, told me he was gona cut me bellow bikini level that was a lie too. now I have a buldge on my right side and my breast specialist said it looks like a hernia didn't know that could happen went to see my ps and he told me "do I look worried" I said you never look worried. I no longer trust him, he's the Chief of Plastic surgery in Mercy Hospital in PGH. Wow I thought I had the best another lie!!! he wants to do breast reduction on my left breast and nipple on the one i got reconstructed.  NOT doing it Do not trust him he lied to me I wanted an implant he told me that it would be cold and hard well my breast specialist said he couldve put it behind my muscle didnt know i still had muscle oh well to late now.  He couldnt take the time out of his busy day to explain ALL the options i had he wanted to do what he wanted, now i feel like a freak.  cant wear a bikini my bellybutton isnt even in alignment got a lump under the breast a lump going across my lower incision and my stomach is so screwed up. i use to be a waitress whch caused the lump in lower abdomen to pop out his solution is keep pickin up those heavy trays well i carry on that side it only aggravates it horribly. his other solution is "rub, rub, and rub"  I feel violated I thought it was his job to explain everything to me he took away my choices now there is no going back.  I would like to sue him for doing this to me and treating me like i was nothing. Having breast cancer puts your mind in a different path you reach out to professionals for help guess what they don't care!!! 

'

Tracy516

Ladies!!! Happy Saturday!!

Had a bad night! I woke up and had a pain/pull/zing in my stomach! Then son (six) started screaming! Nightmare can I sleep with u and dad? Sure ill go to the couch! Then I took meds but it was 4am do I slept all day!! Ugh



Kathy!!!!! Drs tell you the bare minimum;( and my dr really liked the DIEP idea n leaned me that way. BUT I did go into office with an idea how each procedure was done. I came here after my lumpectomy. My nurse navigator said this was the place for indepth details!! I knew my SMILE would be huge but not 23 inches!!! Lol wow.. I'm sorry you didn't know and feel betrayed. But now your here read up and ask question! Someone knows the answer;) xoxo



That little baby is sooooo cute! Going swimming!!;) delightful!

sbelizabeth

DebDylan, when I was first diagnosed and in the surgery/chemo mill, I couldn't even bear to look at people's diagnosis lines.  It all just freaked me out too much.  I absolutely know what you mean.  You said it well...it's all a work in progress!

Welcome, Kathy, and sorry about the ordeal you've been through.  Don't lose hope.  I'm with Deb--get another PS opinion.

My heart goes out to the Colorado people who are struggling with all the flood damage.  We're from Denver and have lots of family there still, but everyone's safe.  Some wet basements but no big deal.  I wish we could get some of that rain here in California!  We rode bikes this morning--hot, hot, hot, and the hills are crispy and brown. 

Nihahi, your area suffered through floods a couple of months ago--is everyone ok and rebuilding?

hrf

Bailey, where did you get the Manuka honey?

Janet_M

Jeannie - You're right - no planks with LE! That was my pre-surgery workout. I couldn't do a plank even if I wanted to - just light stretching and walking for me. I'm such a late bloomer. Took me almost twelve weeks to completely stop hunching and I'm still revelling in the sensation.



Don't mean to discourage you girls in recovery - most people stand up straight long before me.

Moviemaniac

Kathy...your abdominal incision being cut from hip to hip is the norm.......as is (often) moving the belly button. I am sorry that your PS does not communicate well and you feel betrayed. My surgery was in January, and when I went back last week for my Stage 2a, I was STILL swollen and misshapen (is that even a word??????) in my abdominal area.......I returned home last week with a completely flat tummy, and a belly button that had been pulled through itself yet again. Autologous breast surgeries (TRAM, DIEP, SGAP, etc.) are all a several stage process.....with the first stage being merely moving the flap and making sure it will survive. The later surgeries will address the changes that need to occur in order to achieve the most natural look possible. Please stick around, I am sure you will learn a lot, and remember, you are a work in progress......and when the process is complete and you are DONE......you will never have to go back and exchange out old implants for new ones......just one of the advantages of this type of surgery...but you pay for that up front with a protracted relationship with your PS. (Multiple surgeries) go and get a second opinion, and do your research......you will be much happier if you become the author of your own recovery.



Sbe.....I will be booking flight after the 21st of September and then we can make final plans.......re: other grandparents hogging Aubrey.......I would hog her too.....she's ADORABLE.......and maybe I will forgo nipples for daisies on my foobs!



Manuka honey for wound healing....makes sense as honey is a natural antibiotic.......but how do you apply w/o being über sticky???????



Okay.......gotta get back to football......Oregon is bringing their A game!!!!!!

Anonymous

Here is the link to the Manuka Honey I ordered last night on Amazon.com...I have an Amazon Prime account so I get free shipping and always check there first for stuff I want to order.

http://www.amazon.com/Active-Manuka-Honey-Health-Zealand/dp/B001O0BL9E/ref=sr_1_2?ie=UTF8&qid=1379203775&sr=8-2&keywords=manuka+honey



What a great day! My darling nephew is with us for the weekend..took the boys to a military encampment and historical/war reenactments, then to a great pizza place and then rock climbing. I don't feel comfortable climbing yet but I was able to belay (hold the rope so they don't crash) for them and that was fun. Really motivated me to work on getting stronger so I can climb with them.



Here is the app I use (on my lunch hour at work...hiding in the conference room !) for basic strength training...I did the ab, leg, butt and arm workouts 3-5 days a week for about six weeks before DIEP. Nurses were surprised how well I could use my legs to stand....it was TOTALLY worth it! I have been working on getting back into it....I am not yet comfortable doing a lot of the ab exercises.



http://dailyworkoutapps.com/dailyworkoutapps/Daily_Workouts.html

faithunderpressure

Sbelizabeth

Thanks for posting the links to the articles about you. Looking forward to the next one.

sbelizabeth

Bailey, for my husband's and my own first colonoscopy, we decided to get it over with together.  We did the prep together (three terlits at our house), checked in together, and our son drove us home.  Like a spa day. 

The procedure itself was nothing, but the prep...seriously, I pooped out my eyeballs and they splashed down into the bottom of the bowl, looking up at my hiney.  Yowza.

Anonymous

Omg Sbel....that's no spa day, sista...and doing it like date night, yer nuts! Roflmao...idk if my kids could handle both of us looped up on anesthesia at once!!! Brave child you have there. I agree the procedure is no big whoop...and afterwards is one of life's greatest naps.....but the prep ....ugh. There are a few good things about it 1) I get to find out I don't have cancerous polyps 2) I get to see my gastroenterologist and I love that little man and 3) the nap after lol!

Anonymous

Besides DH doesn't have to have one until he's 50 (he's 45) and I've never convinced him that it's a good time. He was "cheering" me on whilst I was gagging down the last of the prep last time and I got so mad at him I tried to make him take a sip. Baby wouldn't do it lol! Not even a sip.

Jeannie57

Sbel, wow, those articles brought back some visual memories. I am glad I am in the give-me-boobs stage!



Tracy, I hope you sleep better tonight!

Bailey, thanks for the exercises.

Kathy, I wish your PS had told you more about what to expect. Movie has good advice.

nihahi

Hi Guys...was out hiking today so have just caught up on another busy day on the thread. Thanks for another Aubrey pic, sbe...she is just the cutest little baby!!!!!

Kathy...There is alot of anger in your post. So sorry you are at this point. Please believe that not ALL docs are uncommunicative. We always need to be our own advocates, and ask questions until we understand procedures and outcomes. You don't have to be a surgeon to be able to reach some level of understanding of what the "plan" is, but it often seems overwhelming when it actually happens to "you". Are you recently diagnosed? Was this reconstruction done at the same time as a mastectomy? Do you have further treatments to go through? It seems to be a fairly common situation on our thread here, that for most (not all) ladies having recon at the same time as losing their natural breast....the adjustment is harder. If recently out of tx such as chemo...the healing takes longer, because the body and "soul" are so tired of being challenged. Healing takes very different paths for many of us, and for many, the first surgery does not result in anything close to the final outcome, and it sounds like your surgeon was expecting to do more surgery for you. Find a surgeon you are comfortable with asking questions and ask LOTS of questions. Keep asking until you feel you have an understanding of what to expect. Ask questions of us...we will share as much info and personal experience as we can. BC is an ugly, frightening, destructive disease, but you don't have to let that become how you feel about yourself or your future.

jakig

Need info if you know, please -about 36 hrs after Stage 2 revision with new left nipple. lipo with fat grafting, revision of abdominal incision. I have a funky very light compression bra thing that I forgot to discuss with PS before the surgery. Uncomfortable.I have the old friend compression around the abdomen.The new nipple has had some fresh bleeding-not a lot-but perhaps I napped in a pinch or something...so I'm not supposed to change dressings until tomorrow but it just seems common sense to change it now. I'm not going to be harsh, but remove the bloody gauze gently and replace with sterile. But question is: there seems to be a small square over both nips that is a different coated guaze of some kind - maybe has bacitracin on it or something? Has anyone experienced this type of coated gauze? Just asking for more info. I know I could call the hospital helpline and get a resident on the phone, but it's Saturday night and doesn't seem like an emergency. So, I'm asking YOU residents on call, any ideas? I've learned as much or more from these threads than I've learned from my surgical team. So, here's an applaud of appreciation, whether you have this latest gauze answer or not...I"ll be ok...just mainly needing to share going through it...pain is medium, pain meds working, hubbie supportive, nurse friend dropping by for next few days...all is well...thrive thrive thrive

nihahi

I'm guessing the "gooey gauze" is something like sofratulle....a thin gauze impregnated with something that feels like vaseline, but also has some antibiotic properties. Often placed over fresh sutures to protect the area from infection and from "drying out". Unless the gauze becomes saturated with blood, I'd suggest leaving it until tomorrow. No matter how gentle you are, you could be doing a bit of trauma to that area. What kind of dressings were you instructed to put on the area after you take down the post-surgical dressing tomorrow?? Other than that....haven't reached the nipple stage yet, so I have no other answers for you. Glad to hear the pain is manageable and that you're being well cared for......heal gently and well!

To everyone in the Colorado floods....if I could, I'd be pulling on my Red Cross volunteer shirt as we speak, and I'd be heading out the door. I go for my first information/orientation night this Wednesday, on the path to becoming a regular Red Cross volunteer. I'm sure the American Red Cross is already mobilizing to help as many people as they can. People in the flood areas, will likely be helped by ARC volunteers from all over the country.

sbe...The power of floods is immeasureable...the hike I did today, was partially up a trail strewn with logs, full sized trees, boulders of every size and dimension, tossed and carried and pounded down the mountains it what can only be described as horrific carnage. Then around some corners...pristine, and untouched. What it does to "natural areas" is one thing....what it does to people and their homes, roads, bridges....often just "gone"....somethings can be washed off and put back in place, somethings are irreplaceable and gone forever. The town I volunteered in.....will be recovering for years. Colorado has a long road ahead of it. 

Anonymous

Realists.....the only people that seem to see what's really going on!

jakig

Yes, nihahi, gooey gauze woudl describe it...will try not to disturb it unless saturated. Thanks, and hey Bailey, I like that pic; too funny!

Cherrie

Wow Katy! I am not sleeping here in Michigan so I read your articles. I could almost put myself in your shoes as many of us here can. That was very brave of you to have people recording this history of yours. Thanks for helping others.😄😄

Anonymous

I read this morning....very good articles, Katy. Thanks for putting it all out there. Your beautiful face in the first set of pictures was very hard for me to look at ...I know the feelings that show on your face in those photos all too well...I am sure if there were pictures of me at those same moments and we put them side by side we would see the same things. What is happening in our hearts cannot be explained. There are no words for being on the brink of a whole new world....for standing on the edge of a cliff knowing you are about to fall into the great unknown.



Most of us sprout wings and learn to fly....crash land and get back up again. I thank God today, and every day for the resiliency of my soul. For its ability to crash and learn to fly again. We are wonderfully made, sisters.



Enjoy your day....let it fly!

jlbloom

Katy, those articles are so good to let people see the reality of breast cancer.  I haven't gone through everything you have, but could identify so clearly with the diagnosis and mastectomy articles.  My husband was reading some of it, since I have my laptop hooked up to our TV in the family room, and walked out of the room wiping his eyes.

It also allows us to know you even better.  They can be helpful for us to share with others that ask about what we are going through.  Thanks, sista!

sbelizabeth

Goodness...thanks, sisters, I'm glad the project has been meaningful.  Looking at myself in some of the photos was hard, too, especially the one where I was waking up in recovery to the news that the BC was NOT just a little tic-tac that could be scooped out with a week's worth of radiation.  But it is what it is.  The next, and last article, will stress the stepping out into the light, and the beauty of life going on, after a BC battle. 

Nihahi, you have found your niche.  You were made to help people.  I can't think of a more suited person to be a Red Cross Volunteer!

Bailey...YOU have a gift to make us all laugh!  You're just the best!

Happy Sunday to everyone--Katy

goldie4040

SBE, it's hard to look at the anguish on your face in that picture.  Just like Jblooms DH, it made me tear up.  It's hard to go back there.  There are even things I have blocked out like a bad dream. 

Thanks for sharing.  It is important to get it out there.  Is it okay if I share the links off this site?

nihahi

Happy Birthday gift for movie (et al)!

christina0001

zoemom - glad your surgery went well and that recovery has not been too terrible. Take care of you right now, the first few weeks can be rough. My PS recommends wearing the binder all day. But it seems like everyone's PS recommends something different when it comes to compression. You may want to call your PS's office Monday to confirm what he or she would like you to do.

sharon, your stage 2b results sound amazing already! I appreciate your sharing, I am getting some lipo done to my new breast November 1st and I'm a little nervous about how it will turn out. This gives me such much confidence! How was recovery, were you uncomfortable for very long?

Katita, happy to hear your recovery has not been too uncomfortable for you. Hope you get that last drain out before too long.

bailey - love the cartoon! LOL I think I'll post that on facebook today.

nihahi - your photos are beautiful!!! You have an amazing gift.

I hope everyone is having a peaceful and comfortable weekend.