DIEP 2013

Jeannie57

Hey, guys. I read this today on bc.org's Facebook page. it was very interesting. Vinnie's blog has a post where he shows some photos, too.

http://community.breastcancer.org/blog/vinnie-myers-3-d-nipple-tattoo-artist-frequently-asked-questions/



Welcome home, sbel!

Debwarrior

Thanks Liefie for the words of encouragement. I'll post again after my surgery. Glad to hear you are back home Katy. Wishing everyone well with their recovery or next step.

lahela

Nihahi, I think it was you that told me about the lying down stretching? I declare my undying love for you!    I'm almost upright! I've been following your instructions, lying as flat as I can and doing my belly breathing every couple of hours and it's getting less and less painful to stand up. It's still tight, but it's bearable, but my back is sooooo much better. I also think the silicone tape helps because it holds the scar so it doesn't pull.

sbe - so glad to hear you're home.

My infected noob is so much better, but it's still really swollen. The other one has lost all its swelling now and is half the size. I hope they end up somewhere like even, because I look so weird with one C and one DD 

Love to all.

mrtw43

Good morning, I hope everyone has a great weekend. I saw my PS yesterday for the 8 week post op appt and he gave me the all clear on my restrictions. I am excited to do more and actually I think my DH is probably more excited because he has been doing everything and I mean everything (without complaints) since I went into the hospital. I took the do nothing seriously for the 8 weeks. I am finally off any compression garments, i can sleep on my side -which was awesome by the way, and I can wear regular bras now.



My PS initially said he wanted to see me in Dec to schedule stage 2 for early next year, and when I gave him a disappointed look, he said well unless you wanted to get it done before the end of the year since you have probably met your deductible, when my face lit up he laughed and said I was healing nicely and that we could probably move the meeting up to Nov and scheduling the nipple recon in late Dec. as we walked out, I scheduled my next meeting with him for Nov 18th yeah!!! Now I just hope nothing goes wrong between now and then.



Laheha, I am glad you are "stretched out". For me finally being un-hunched made a world of difference in being more mobile.

LuvSnow

First, I want to thank everyone for your feedback!



Cuetang- forgot you were here as well I have heard of Dr Chang. I may do a consult with him as well.



I spoke to DH last night. He said cancel my appt w/ my old PS and just get into Johns Hopkins. We decided I should go for the flap. It's not just the look. But how these feel...I came home from work yesterday and was cleaning floors...with every movement I could feel them popping/moving under the muscles. I can't do that...I don't want to think about my Foobs every single time I clean, or sand furniture, exercise.



I am assuming my insurance will pay to have this all fixed (??). I'm hoping I can get in by Dec 31 since I met my deductible for this year. Though I guess I will have "step 2" in 2014 (ok what exactly is step 2? Does everyone have it?).



Recuperation with a redo - can anyone tell me how long?



Thank you!!!

LuvSnow

Forgot another question I had:



Currently with implants I can feel every lump/bump because the skin and muscle are right there. With the flap, how do the check? Ultrasounds?

MartyJ

Mom - insurance should pay as they should be considered failed implants.  Like Nihahi, I had implants for many years before free flap surgery.  I know that you are in a hurry to get everything "fixed", but please remember that this surgery and recovery takes time.  It is much more significant than implants, but produces a much better result.  Generally, plan on a 6 - 8 week recovery (although some require less time and others more).  It is not a recovery to push yourself through - patience will be your friend.  Stage 2 is different for everyone and may be done all at once or in steps.  Stage 1 is all about getting the tissue in place with the vascular system working properly.  It takes the most surgical time and longest recovery time.  Stage 2 is about aesthetics - reshaping, repositioning, refining, etc.  I don't think I know of anyone who has had one and been done.  

You definitely should consult with several surgeons.  Johns Hopkins is a wonderful teaching hospital.  Bernard Chang at Mercy has a very good reputation.  Each surgeon may have a different recommendation and you may find one more personable and caring than another.  You will need a good relationship as you will be their patient for quite a while.  You need to find out exactly how many free flap procedures the surgeon does each month.  You also want to know how residents will be involved in your surgery and after care.  If a resident or fellow is participating in the surgery - what is their level of training and how many times have they actively participated (not just watched).  Find out who will be your contact immediately following discharge.  If there is a problem, you should be ready not trying to play catch-up.

Follow up cancer screening recommendations are as varied as the doctors.  Most get MRI at certain intervals.  It is important to keep your PS involved and get their recommendations as many radiologists and BS have challenges reading following free flap.  Although this procedure has been around for quite a while, many radiologists and BS are not as familiar with reading the studies and have challenges differentiating between different tissue changes.  The goal is to be able to know what is a fat necrosis and what might be a problem, though I have been told that it is very, very rare to develop cancer in the fatty tissue fo the flap.

nihahi

hahaha.....lahela, I love you too! You should find that your painful, hunchback days are now forever behind you....such a wonderful thing,eh! The silicone tape is likely "holding" the skin a bit for you, but it is also keeping your scar moisturized and warm, which helps too. I'm so very glad it helped you. The tight skin feeling lasted quite awhile for me, and now I only feel it very rarely, after prolonged sitting, but like you said, it isn't painful, it just feels like tight skin. Now tell that cellulitis to hit the road next, ok?!

sbe...you have such a wonderful family and your sense of humour is mindboggling. One of the few people I know, who can make being attached to a personal "boom box" seem funny. Pizza and a baby....sounds like a wonderful night! I noticed you never did respond to the "cheesecake.....yeah or nay" questions!

bailey....hooray re: ultrasound!!! Have fun at the art thingy! (cultured, ain't I!)

sharon....shingles....lordy....hubby and a friend have both had them..uber painful.

mrt...sounds like you're doing wonderfully well....good to hear your PS understands the financial burdens for you too! I bet he makes sure your next stage is done within this year.

momof5....Stage 2, tweaking, revisions, all different names for the same thing, a 2nd surgery...which is different for each of us. Sounds like hubby is supportive and understanding. Flap surgery isn't a walk in the park, but it is doable, and once you are through the healing and the hurdles....you are DONE! With implants....there is ALWAYS the possibility of replacement/complications...no matter how long you've had them, or how much you like them. It sounds like your feelings are similar to what mine were.....ANYTHING is better than this....but I'm going to try once more to get what I want. It has been totally worth it for me.

debdylan....how are the se's for you????

sweet....stay with us girl, things are GOING to get better

gotta go.....can't mention everyone, or I'll have to start wearing bailey's hat. 

jeannie and movie...MWAH!.....have a wonderful visit today, order lots of appetizers, because the pocket party can only provide so much food!!!!!!! fyi....don't go to a tapas place...liefie would get upset!

LuvSnow

Thank you ladies!



The recovery period is fine, and I understand it is not easy. But, I made it through 2 major surgeries this year, I know I can do this one



My concern for screening was not the flap, but my skin (I had SNS) and the muscle underneath. But I guess MRI should catch anything.



Good advice on questions to ask, especially in regard to residents...had that issue with my laparotomy there in July.

sbelizabeth

Hahahaha....Nihahi, he didn't comment on cheesecake, one way or another.  I don't know if he ate it just to be polite or if he really likes cheesecake.  Thanks about the other stuff.  It's nice to know, though, that this is the place I can come when I'm sad or anxious, as well as when I'm handling things.  

My DH is in gizmo heaven.  Remember I told you he "owned" my drains after my DIEP and kept a computer spreadsheet, etc?  Well, with the wound vac and the IV pump he's become an ICU nurse.  All the flushing and connecting and screen checks and plugging-ins are now HIS. He's so intense it's hard to not laugh, but I love him for it and I'm willing to zip it and enjoy the help.

DebDylan, how ya doin', girl?  My chemos were always on a Wednesday, and my "chemo Friday" was my tired, achy, cotton-headed day.  I hope you're doing OK.  Remember to get yourself moving, no matter how slow.  Some fresh air and sunshine, and moving your body around, can help a lot.

Bailey, a few years ago we had a vacation in Ireland, which was beyond wonderful.  We had dinner at an old castle where they seated everyone together at long tables, and I found myself seated next to a very pleasant older lady.  Her name was Bridie, she was Irish, and we chatted and laughed all evening.  Somewhere around dessert, we were talking about our careers and she said she was a Sister.  I was a little horrified.  I scolded her.  "Bridie, it used to be that nuns looked like nuns and couldn't sneak up on you like this," I said.  "What if I'd said "sh*t" or something?  To a nun?"  She laughed, and then educated me on the difference between nuns and sisters.  Apparently nuns are cloistered, and sisters are out in the community.  Nevertheless, this "stun the nun" situation was "stun the dinner partner."

Let's see...can I fit my IV pump and wound vac in my Camelbak so I can take them for a ride?

pmat001

Hello Ladies - After a week or so of lurking on the board, I got the call yesterday that my surgery is on for October 17th!  Very excited and now feeling a bit overwealmed how to get everything together in the next few weeks.  My main question is for those who have gone through this with younger kids - I am a SAHM to 3 little monkeys aged 5, 8 and 10 and a DH who works a lot and I am trying to get a sense of how much help I will realistically need and for how long.  We don't have family that can stay for an extended time and we recently moved to a new town so our friends are at least an hour away.  I know the kids and DH can pick up some slack but I am mainly concerned with getting them to their activities (any rep hockey moms out there know what I am talking about!).  Thinking of possibly getting a nanny but wondering if that is too much....

thanks

Patti

jlbloom

Katy, happy to hear things are coming along.  You have had a rough go with that cellulitis.  My husband had it after his large intestines were removed.  His surgeon blew him off and told him not to worry about it.  Because of other questions we went to Cleveland Clinic.  They admitted him and put him on IV antibiotics for three days. 

Bailey, glad that the ultrasound results were good.  I have a tender hard spot that my BS thinks is flap tissue, above my prophylactic noob.  I will have an ultrasound in about four weeks.

Hope everyone is enjoying weather as nice as it is here in central Indiana!  ...Julie

sbelizabeth

Pmat, welcome!  And congratulations on your date getting so close.  My "babies" are both 31 years-old, so I don't have much advice to offer on DIEP recovery with little monkeys to look after.  I do know, though, that you won't be driving for a while!  Your post-op job will be to rest, rest, rest--walk a little bit--rest.  If you can afford to hire someone to help with the kids a few hours every day for just a few weeks, it would be quite a blessing.  

Jlbloom, I had a hard, tender spot above my right noob.  I think it was at the spot where they dug around under my rib for the vessels.  I don't know if my PS removed it during Stage II or if it just faded away, but it's gone now.  

Jeannie and Movie...I'll pick up the check today.  Gosh, I SO wish I could!

It's so beautiful outside.  Fall is here.  And we DO have fall in So Cal, you just have to be paying attention or you'll miss it.

sherry35

Well the verdict is in. My PS is happy, happy, happy! I am having surgery on Monday morning to close this abdominal wound once and for all! Sooo excited.

My boob holes have to heal on their own but that's ok. I can live with that.

I'm enjoying a lovely weekend with family, hope you all are doing well!

Cheers,

Sherry

Downey30

momof5kids,  I haven't really posted here but do keep up with all the posts.  I was in your same situation. I got a couple of opinions and then went to Duke.  I was told that my only choices were implants.  After three unsuccessful implant surgeries he wanted to do another.  By that time I had capsular contraction in the radiated breast that it was almost up to my collar bone.  Not a pretty picture.  I ended up doing a lot of research right here and had Sgap done.  One side was much smaller due to a bony defect that none of us knew about.  I went back in and they used the menopause mound( belly) to add to both sides.  I ended up a four flapper.  I am very happy that I chose this route.  They are warm and soft and feel like a part of me.  I hope this helps you with your decision.  It is a process but certainly a doable one.

This thread has unbelievable women.......strong, caring, and so very supportive.

Hope this helps.  Feel free to PM if you would like.  Jamie

sweetpickle

Im hanging around guys, reading away.



Congrats Deb. sending speedy re overy vibes your way.



Sbe- Hope you got lots of snuggles from the baby!



Good luck to those going this week and welcome to our new friends :-) I am hanging out in the wings, still feeling down but dh was able to help massage my left shoulder to where it is usable again. It was so painful before. I am plugging away still and I know it will get better in time. I think getting to a lymph specialist will make a big difference.

christina0001

Hey ladies, hope everyone is feeling well this weekend. All is well here. Of note: the laser hair removal on my foob did not work. I guess the hair was too light after all. Oh well... I'm okay with it now. Also, kind of personal (but who else can I share this with?) last night was the first night in over a year I was intimate with my husband without a top on. I was nervous but it was wonderful and he was wonderful about it. I am so glad I had this surgery. It is so nice to be feeling close to normal again.

hrf

Patti, if you can afford it, you may want to consider a nanny for a few weeks. I had my surgery 6 weeks ago and I don't have little kids.

liefie

Sbel, glad you're home, and that your superb sense of humour is still intact. With you and DH it is easy to see where your son got the doctor bug - lol.

Debdylan, so good to hear you are doing well. See? We told you it would be okay. Now keep on the handwashing and mouthrinsing, and do take short walks for fresh air. One down, and the rest will be over soon. I drank lots of flavoured ice-cold milk, ate joghurt and ice-cream, and chicken soup now and then. Also had a weird craving for fruit. Did not have any appetite, and most food tasted like cardboard, but one has to try to get in some nourishment.

Sweetpickle, I can understand that you are weary and worn out - what a tough road you are travelling! Hopefully a lymphedema specialist can resolve your issues. I agree that something does not seem right with your body.

Sherry, so happy that you are doing well. Good luck on the surgery!

Movie and Jeannie, how was the visit today? Movie, that was a big surgery for that little boy  - best wishes for his full recovery. If you guys had tapas, I'm sure they had not been nearly as expensive as the ones here in our neck of the woods . . . Only millionares can afford tapas here, not ordinary people . . . lol. Nihahi, if you organize a visit to your sister, we can all meet up in Seattle in January - will be so wonderful to meet all of you!

Sharon, excellent tip using those round cotton facial pads with holes cut in them as nipple protectors  -thanks! Will certainly do that when my turn comes in January.

goldie4040

Sweet, have you ever had your thyroid checked.  Sometimes chemo,or menopause can get it out of whack, and a sluggish thyroid can make you retain fluids. Just a thought. I am really sorry you are down.

goldie4040

Sherry, you did it!!!  You came out the other side.  You did awesome.  You are going to feel so much better with that incision closed.  Great news!

goldie4040

Christina, not tmi...you go girl!!!!  I bet he was happier than you!!!  I am happy too, lol. 

Moviemaniac

Lol.....I beat Jeannie on here!!!!!   Had SO much fun visiting with her today!  Just a sweetheart.......wish she was a little closer.   Only downside......rain was SO bad I almost needed a raft to get back to Lake Oswego!!!

Sherry!  Congrats! You DID it!  I know exactly how you are feeling right now!    As soon as that is sewn shut, you will be surpirsed how quickly your energy rebounds, because you are not wasting energy trying to repair yourself!  

Have to run some errands....will post later.....XO

Anonymous

Ohmigosh! SOOOOOO darn busy these last few days! I'm caught up with you, but too addlepated to comment on everyone. DH and I ran the Race for the Cure this morning. I still couldn't stand in the rows of survivors to have my picture taken. I just didn't want to. Idk what it is, but I can't. I couldn't walk behind the bag pipes to the start line either. I grabbed DH and friend's daughter and we took off on our own ahead of the crowd, to get to start line. What is it about bag pipes that makes me want to fall to pieces? My bff has chaired the kid's tent activities for 16 years and another bff who is a year behind me (since dx) was working at the tent, too. I guess I am very open about the bc with people that I am close to, but not so much in public....not even in a sea of pink. Anyway, it was good. Glad it is done.

Will now start concentrating harder on building strength again (before next surgery). OT' s orders and she is in charge!

Sbel....how'd the camelbak work for you? He he he.....made me remember when I was in jail (I call cancer center cell block 5 because their parking ramp is #5 and hospital is cell block 7) with infection, they told me I could go outside as long as I took IV pole with me....tried to get DH to pull up to door with the car to take me home until it was time for next bag to be hung....he's such a rule follower lol...dammit.

Christina....:) Very happy for you.

Debdylan - good job. You just had to show up and you did. Enjoy your days between now and the next. A big part of what got me through was the good days in between and enjoying every little thing I could. I can't remember which chemo you are on but most can be harmful to your nails....cuticle oil....every day...massage in. I had some minor problems but managed to keep them!

I saw a sign today..."Friends accept you for who you are, encourage you to grow and remind you of how far you have come". Made me think of all of you!

And a t-shirt with Romans 12:12 on it which says, "Be joyful in hope, patient in affliction, and faithful in prayer." Good thing to put on continuous loop in my head lol.

Sweet - I will post a pic of what I looked like at my "end of cancer tx" party. It was not great. It has taken a year for me to get where I am. It's not easy...especially when we do a flap reconstruction. But you can move forward. It sometimes seems to me that I have had to work harder during survivorship than I had to battling cancer. Weight loss is harder after chemopause and chemo. We have to work harder than other women to do it...and we have the aches and pains and fatigue, too. But it is possible. Don't give up, sista. You are making progress every day.

Didn't somebody just get a bike? Who was that and have you ventured out? We want a full report lol!




Sorry pic took out all my spacing I guess.

I agree on getting thyroid checked Sweet....mine was knocked out by chemo and rads

Curlylocks

Really tough couple of days...mom was admitted to ICU due to kidney failure. Was put on dialysis until about 8 hours ago. Still pretty sick...they are working on getting them functioning 100 percent. Really scary over past twenty four hours...I had dejavu of my sister dying in ICU last April for the same reason. Mom is a diabetic, she had an ongoing kidney infection that would go away despite many rounds of different antibiotics and be because of her kidneys being compromised due to the infection the metaformin she was on nearly killed her. Metaformin produces lactade acid that her body was not getting rid of properly and it shot up her potassium levels to dangerous levels. She still has line in her main vein in her neck if thy need to put her back on it...very hard to see:)

I am extremely thankful for listening to my little inner voice that knew my mom was not herself yesterday and took her to the hospital. She wanted to go home and not wait to see a doctor. In Er but I told her no to suck it up buttercup...her response I don't like buttercups.lol

She would have been dead last night if I hadn't taken here.



Will check back in when I can...running on empty..didn't get home till 415am and to bed at 500am..three hours sleep and back to hospital today.



Hugs to those having issues.



Michele

Anonymous

Hugs to you, Michele! So sorry to hear this! Praying for your Mom and for you! So glad you followed your gut.



And btw Sbel...loved your Ireland nun/sister story! Yes, aunt is a sister, not a nun....but most people haven't had an educational dinner with Bridie! And somehow I think we all ought to...She sounds delightful. Our dear aunt fell and broke her tailbone several months ago and has had a difficult recovery. When she made her way to the stage (with her walker) to accept her award she began her speech with thanking every one for coming to see her at her first public appearance as a "fallen woman". Lol!



Movie- how is dgs? Prayers!



So glad Movie and Jeannie met....would love to meet you all!

nihahi

OMG.....this thread NEVER settles down does it!!!

curlylocks....such a scary thing to go through with Mom...hope things get sorted out for her. Yes, that inner voice carries great knowledge!!! Sometimes we just need to be quiet enough to hear it, especially when it is talking about us!

sbe.....hmm....isn't "met" the drug trial you are considering signing up for????

pattismiles...oy...do I remember the driving for kids activities. But I also remember that hockey moms can be pretty supportive of each other. Are there any parents that could help with the "shuttle service"?? You will need to be very sure you are healed AND agile enough to be safe driving, especially if children are passengers. 

sweet....SO happy to hear from you....hubby must have magical hands, take advantage of those shoulder rubs! When is your LE appt?....can't remember if you have a date for it yet.

christina.....we celebrate EVERYTHING on this thread....no "return to real life" is tmi or off topic...isn't that the goal of us all!!!! Gotta say though, goldie, I think it likely had a whole different level of emotional meaning to christina.

bailey....you may not feel it's a good "look" in that photo....I think it shows one friggin courageous lady...surrounded by the hands and hearts of friends. I love that photo. I also have no desire to join the pinkshirt rank...it is a symbol of something that I feel does not define "me"....ditto on the bagpipes....always bring the tears to my eyes. I think it brings out the Celtic soul in me (Dad was Scottish/Welsh). We had a piper at his funeral, which was hard enough...at the graveside, unknown to me, the piper was there too....completely did me in . Don't let that OT catch you slacking off!!!!

debdylan...there are 2 rules of getting through chemo...try to make what you eat "nourishing" and try to eat "something"....difficult at times to follow both rules. Talk to your onco team about the headaches, and se's, they might have some ways to help. There is NOTHING wrong with a long nap...bet it was just as much stress related exhaustion as it was se, but, when you can...the fresh air does really help!!!

sherry....that is spectacular news!!!! Movie can remember that emotion I bet....so nice also to hear that you were enjoying familytime...hasn't always been that for you lately. You have SO turned that corner!!!

downey....we are always happy to hear from a veteran!!!! Please hang around and add your thoughts....bet they help more of us than you think!

liefie....not to be rude...but I was thinking more of a "springtime on the west coast" kind of timing, (when I'll still be eyebrow deep in snow) as opposed to during your monsoon season!

movie...jeannie....gosh, I bet you had a great time!!!!!

movie...how is grandson doing???? You must be one exhausted lady.

good lord...I've typed half a page...must....stop.....typing....now....................(hugs to all)

nihahi

bailey....love the fallen woman line!!!!!!

Also love the definition of a true friend.....yup....that's all of us...to each other!

Downey30

Thanks Nihani for the welcome. I will stick around and hope I can encourage and help someone even just a little bit. It can be a tough road but with a beautiful finish. You ladies are just awesome.

Jeannie57

Pmat, Downey, welcome! And to all lurkers, too. We are here for you!



Movie! Glad you made it home without renting a boat! We made good time but then ran errands. Ladies, Movie is just as sweet, kind and bubbly in person as she is here! So good to hug her! I'm hoping a January get-together happens! Liefie, I see we are all going to get some weather this weekend. Fall has arrived.



DebDylan, you did it. I hope you can figure out something to eat and nourish that warrior body of yours.



Michele, so sorry to hear about your mom. I hope tonight brings you deep rest and that your mom can come home soon.



Bailey, that verse is a good reminder. I will try to practice that.



Sherry, so thrilled for you!!! It's about time you had good news.



Sbel, I hope your body did some serious healing today. My husband was all about the drains, excel charts for drain output and med schedule, too. Good thing, since Wilbur was in my lap.



Christina, thanks for sharing! Nothing is tmi.....the ladies and I touched on that subject at lunch today. Sigh. I suppose I should try....



Hello to everyone else and happy healing.