DIEP 2013

Pattysmiles

Still waiting to hear from the doctors office for my pre-determination of benefits as this surgery is not covered under my plan. Plenty of time, as I am looking at the fall. Finishing chemo soon, and hoping to take two months off to "get in shape" and enjoy the kids summer and ease them back into school. I'm debating if I should look at NOLA, do they accept what insurance will pay and waive the rest? I don't know if my doctor will do that, they seem vague.



Picked up a shower chair and a cane for a whopping $3.50! I never thought i would be so excited to find those things at a church tag sale. Lol. Bonus is when i pick up my mom to visit I no longer have to pack up her shower chair. One item off the prep list!



Pat

marieann1020

Hi Ladies,

I am new at this,  ( and a Little nervous) please be patient

I am triple positive, had a double mastectomy May 2012 with 4 months of taxotere, Cytoxan

and one yr of Herceptin, plus Arimedex for 5 yrs.

I had to have my tissue expander's out due to cellulitis.

I am now scheduled for Diep at NYU in Sep.

I have mixed feeling about Diep -- but when I look at myself, I know I want to go through with it.

any advise ?

Anne

goldie4040

Hi Annm,

You've had quite a year. You are on the back end of the worst of it.  Now, you can have your DIEP and feel complete again.  I am scheduled for July 24th, and I too am scared, but I know I cannot go on like this anymore. You are very lucky to be near one of the best hospitals in the country, and you are doing the right thing, IMHO. 

Since you have already had the bmx, the diep should be a little easier.  When women have the immediate DIEP they have to get their ROM back, and deal with the tummy incision.  From what I have heard, it will be easier for you having a delayed procedure. I am having delayed too, so I am trying to make sure I have all my ROM back before the surgery, and also doing some core exercises in hopes that it will help me with the tummy issues.  

You have come to the right place.  Stick with us.  We will get you through this. 

Anonymous

Yes Nihahi...still sitting in urgent care looking at my cleavage....peeing every 45 seconds or so....



No, actually, got out in under an hour hour last night! Confirmed UTI. Drugged up. My oldest son (just home from camp counselor job for two weeks) took me and then I took him to dinner (he was so happy for real food!). It turned into a good time.



I hear you ladies on so many aspects of the last few pages. Many good friends don't understand why I made the choices I have made (fortunately I haven't lost any friends over it!). I guess I understand the initial reaction of many, because I had the same initial reaction....just take them off me!



We don't need breasts (unless they are your money makers!) like we "need" our arms and legs and senses....So I think the initial thought is, "just get rid of them if they want to kill me!"



But for many of us, once that horrible fear has eased a bit, and maybe after one or both have been removed, and you start living with the flatness or the uniboob look, many realize just how amputated we feel. And the number of everyday problems you have to deal with (like what to wear so nobody sees down your shirt to the scars or prosthetics) (or a loose prosthetic!) (and most importantly for many of us....the physical or mental pain).



I don't know what it is because we don't "need" hair to function any more than breasts ....but everyone would understand if you lost your hair and had surgery to replace it. Why do people think getting your breast reconned isn't necessary (no disrespect to those who decide not to recon...whatever people choose I say, good for you)?



For me it was a desire to feel healthy and as normal as possible. I am not the type to go around dressed "sexy"....more of a sporty girl...but I like a v-necked t-shirt and yesterday at doc's office was so happy to glance down and not see my foam boob....just my skin....like before bc.



I would get halfway to work lots of days and realize I'd forgotten my boob (Kleenex stuffing days) . It would make my scar itch when I did have it, so I was always pulling it out on my way home from work and leaving it on the car seat. My boys LOVED that lol. "Mom, do you HAVE to leave it in the car???"



I wasn't able to wear a regular bra (and still can't but looking forward to it!) since mx because nothing fits a uniboober and everything except sports type bras were uncomfortable. I was always wearing cardigans and scarves to cover up the uneven look.



But all of my problems and pain were things nobody could see. I think that is part of the reason it gets dismissed as unnecessary. I didn't limp or use a wheelchair or lose my ability to do my job.



Sorry, kind of rambling. My most sincere response to people who don't "get it" is, "I am really glad you don't get what I have been through and I hope you never do." It has the added bonus of usually shutting them up as well



And then we have the number of friends and family who do not understand my decision to leave the healthy right one on instead of prophy mx...ay yi yi.....so fun. But it's my choice and I am confident in it....I did my research and know I made the right decision for me. So, good for me!

Anonymous

And another thing to remember....anybody can be opinionated....it doesn't mean they are informed.

MartyJ

Anne - I am so glad that you have made a decision and scheduled.  I know you must be glad to have the chemo behind you.  Now you can relax and prepare for the next stage in your life!

Moviemaniac

Have had a busy weekend, and have nothing of value to add to the discussion, except....."Amen, Bailey!"



And because it's Sunday, I am off to take a nap!



Namaste and God Less - Jackie

Anonymous

Namaste and God More to you, Movie.

liefie

Re the friendship thing, I was lucky not to lose anybody. If it had not been for these boards where I could express my miserable self during the dark times last year, it may have been different. Outside of these boards I hardly ever discuss bc unless somebody asks me something. I don't want to talk about it much anymore, because then it comes into my mind again, and I want it to be just a blip on my radar, not a big thing. I do have one 'friend' who comes and goes in my life. My take is that she loves drama. She was very sympathetic, drove me to appt. when I was too weak, visited often, etc. Now that nothing sensational is going on anymore, I hardly ever see her. I'm not taking her seriously at all, and she has probably moved on to something more exciting. Around my DIEP surgery there was some activity, but that is how she rolls, and I am fine with it. When it comes to bc, these boards are my home. I can be myself, and people understand. It is a precious thing for which I will be forever grateful.

Lilyn

Baiely thanks for that great post. I am still debating the DIEP. Went for one consultation and then another information session. I also get that feeling that people wonder why I would do that now. I was diagnosed in 2008 and had a double mastectomy 2009. I just turned 60. I am a little afraid of such a big surgery and those damned DRAINS! but on the other hand I am sure it would make me feel in someway healthy and normal again.

Morningsun1

I get at least one good LOL a day from reading here. Today's: Movie and Bailey. Yes, liefie, this is home, when it comes to bc.

goldie4040

Bailey, thank you for your post.  Even though I know all that in my heart, the way you put it into works helped. My favorite was your add on afterwards, "Just because somebody has an opinion doesn't mean the're informed."   Love it!!!!!!!!!

Liefie, you are right, unless somebody asks, I am just keeping quiet from now on, except for my very closest friends, who really do care.  I compare BC to a death.  When somebody dies everybody rallies round, and when you need them the most, they are gone.  Because I have had people close to me die, and I get that, I always am the one there a month later, two months later, even a year later.  Whatever it takes. The same thing with cancer.  The worst is usually yet to come, and I promise when this is done for me, and if it happens to somebody I know, I will be there, and I will listen, and I will do for them without even being asked, because sometimes it's best that way. I will listen, I will give my opinion when asked, and I will just be there, and I will tell them to come here too, because this place is the best. 

marieann1020

Hi Goldie,

It has been a horrible year, I was hospitalized 4 times with Neutropenia, and once for emergency appendectomy, and just recently with cellulitis.

so I'm ready to move forward, and try to live the new normal

what do I need?

button down night gowns? what else

sooo nervous!

Anne

marieann1020

Goldie,
You are so right, I too will be there if someone ever needs me.

just recently my husband, and I were at a dinner, with 2 other couple, one of the wife had BC

10 yrs ago, She refused to speak or look at me,   it was so awkward .....

 I would be the opposite, I would tell her if she needed to talk I will be glad to be there for her!!!

I ended up leaving early :-( 

thank  God for you all

Anne

marieann1020

Hi MartyJ,

Glad to see you here

I have one more Herceptin treatment on the 18th of July ( hurray !!!)

Diep is scheduled the first week in Sept, need to go for a Doppler first

hugs to you

Anne

Anonymous

Anne- do you have a recliner? I think most of us would say that was our most comfortable spot for the first few weeks.



Lily -nobody has to live in your body except for you. There are women here of every age. It is hard to take your body when it is finally feeling better and put it through a big surgery, I know, I did it, too. But it's doable!

nihahi

Bailey....just want to say, I LOVE YOUR RAMBLES, please don't ever stop.

Movie....YOU are the value you add to this thread, hope it's a lovely nap!

Liefie...amen, girl...I'm the same. bc is NOT the focus of my daily thoughts, conversation or life plans. I credit the safety, understanding, companionship and out of the box hysterical humour of these ladies. I am more "healed" after joining the thread, than I have been for years!!!!!

lilyn....I'm way earlier than you re: mx date (1991) and will soon be 3 years older than you. The reward..silver lining....for me, the reason to have a surgery like a free flap reconstruction is found in the last 4 words of your post....."healthy and normal again".

annm....what a year!!!!! Hang in there.

Hospital list: Think minimal. Slippers, maybe a robe, lip balm, toothbrush/paste, hand lotion, facial wipes like Olay cleansing wipes, loose, adjustable waisted pants to go home in, front closure top, zipper or button, this time of year, maybe flipflop sandals would be good to go home in. Maybe larger than usual panties and camisole. 

Drive home: pillows to pad the seatbelt and maybe rest your arms on. Sunglasses....you'll be tired, and will have been inside for a few days, at minimum. 

Once you're home: This is the most individuaized....either lots and lots of pillows, or a recliner/lift chair to nap/sleep in, until you can lay flat comfortably. I found having a wheeled walker for a couple days allowed me to walk farther and more comfortably, a raised toilet seat, and my most favorite....a shower seat. We all have different at home help and "quirks".

I'm sure others can add to this. If I had more "access" to the top of this thread, I would pin this to the top, as it is a recurring, and very important topic. 

mammalou

Well I went to my sister's wedding yesterday, 10 days post diep. I had to travel 2 hours each way to get there. I am glad I went. I think I did really well. I sat a lot, but did walk around some. I had exactly one baggy shirt that pretty much covered my four drains. I took pain pills once. We got home 12 hours later and I have to say I was pretty much toast. Moving was difficult and I was tired. I cleaned my belly button, which seems to be a bit infected, and passed out in my recliner. I'm resting big time today!



My list for the hospital.... Toothbrush, sippy cup, Chapstick, wipes. I never even put on my bathrobe, just walked in my gown and wore hospital slippers. It's amazing how you don't really care once you get there. I took my phone and I pad, but I didn't spend much time on them. I didn't wear any underware because of those darn snake eye drains! Underware hurt! I wore in and out my GO pants from Target, button up shirt, and flip flops.



And, I would say the recliner is a lifesaver! I resisted renting it, but it has allowed me to sleep and rest comfortably.



I hope to get those darn drains out on Wednesday.

goldie4040

Anne,

I found a recliner helped tremdously after my bmx, and I am hoping it will also be my best friend after diep.

As far as what to bring to hospital, and have handy at home.  Yes, button up soft shirts are great.  I bought 4 cheap nightgowns that button up the front at Kohls, and I live in them around the house.  I also love Barely There sports bras.  They are the softest ones I have ever owned.  I loved them before my bmx, and was glad to have several for after.  I have expander's in now, and they help me feel more comfortable. 

For the hospital, just bring something easy to wear home. Soft button up the front cotton dress, flip flops, toothbrush, disposal facial cleansing clothes.  They are great for the whole body. Your cellphone, and whatever other cyber device you like to have around.  Don't leave them in your room till you are there with them, of course. I am going to take somebody elses advice and try Biotene mouth drops for dryness.  I sucked on more ice chips than I care to remember, and they didn't help. I heard that Biotene is awesome after the anesthesia dry mouth problem.  I personally never got a chance to change into my own pj's or nightie in the hospital after my bmx, and I assume it won't be much different with the diep.  Some people bring a light robe to wear when they go walking in the halls, but if you still have an IV in I don't know how well that will work. Maybe some comfy Granny panties for after they take out your catheter? I even brought a little make up with me, and I did put a little on the last day to make myself feel better.  Oh yeah, chapstick is a must.

If you are going to skip the recliner suggestion, you might want to invest in a wedge pillow.  I ordered one off of Amazon for when I want to lay down.  I hear it makes it much easier on your tummy incision.  I do have a shower chair, and I did use it after my bmx.  I probably will use it again, and I am borrowing a walker from a neighbor to try and avoid lower back pain for bending over with no support.

When I think of more I will let you know. 

liefie

Annm1020, can't believe that bc survivor who gave you the cold shoulder like that! Wow! She'll probably say it is 'too difficult' or 'traumatic' for her to deal with other bc patients, but that is no excuse in my book, and comes across as rude. Such a lost opportunity when she has so much to give from her experience to help others. That's what I try to do. People in our town have been diagnosed with bc after me, and it is/was a privilege for me to try and reassure them, and to show them by my example that they will get through it and that they will be okay. It is the very least I can do.

Mammalou, so glad you went and enjoyed the wedding!

marieann1020

Hi Bailey6760,

I just purchased a recliner..( I figure I'm worth it

what else, will I need?

how are you feeling?

Anne

damiana9

Annm1020- Yes, I love having a recliner. I had surgery June 19th and am still using my recliner most of the day and I sleep in it too for now. I did not need a raised toilet seat, but I did need a chair in the shower- I used a plastic lawn chair and it worked perfectly! I would move it out of the shower and sit on it to do my makeup and brush my teeth also at first until I was able to stand that long. Also- dresses! I am not a dress person,but I havehad an easier time in skirts/dresses than anything else. especially when I had my pubic area drains- I couldn't wear shorts or underwear. Now I don't have drains but I am still so swollen that it is still more comfortable to wear a dress than shorts.

sweetpickle

Mamalou- So glad you were able to make the wedding, that is huge!!! Rest easy now.



I made the drive to my house two hours away, watched my dh pack about forty boxes while I directed and then drive back down here to mil house. I was so sore and tired when we got back here but so happy I was able to make it. Moving is a pain in the butt, more so if you are an OCD control freak that cant move very well, aka, me.....lol

Janet_M

Mamalou!

You did it!

You made it to the wedding! I was so happy to read your post - I've been rooting for you all weekend. Rest well - you deserve it.

Anonymous

Oh, good for you Anne, you are totally worth it! I think Nihahi and Goldie' s lists from earlier tonight were very good. I did button down pj's instead of nighties. I preferred loose waist shorts or skirts with button down blouses (a size bigger than normal) and a cardigan, as necessary to accommodate hot and cold flashes (menopause and thyroid issues at the same time).



Lip balm very important.



I got dressed in my own clothes on days 3, 4 and 5 in hospital. I just prefer it when I am hospitalized. You have been in enough the last year to know what you like.



I feel great from a DIEP standpoint. Getting stronger every day...doing more every day....well I was..UTI has set me down today, but I hope to go back to work a week from tomorrow!

m1970

I just found this handy website that lists doctors that perform the DIEP flap procedure worldwide and by US State I thought I would share:

http://www.diepsisters.com/diepdoctors.html

goldie4040

Wow, Anne, that was quick.  Do you have a recliner store next door....heheheheh.  I am glad you got one.  You will love it for years to come.  If you have a husband be careful, he might try to steal it from you.

marieann1020

Goldie4040 -- thank you, very helpful

Nihahi-- writing everything down -- can't wait for my dopler-- ( hope it will be okay )

Liefie-- I was sooo upset, they way they  ignored me! ( granted I look different, My hair is just starting to come back, ) but I had make up on, and I thought I looked okay,   I tried to have a conversation with her, and she,and her husband refused to have eye contact with me.

I am totally the way you are-- I feel this is my  way to help others.

I still feel like confronting them!  but my husband told me to let it go

hugs to all-- feel blessed to have found you

Anne

nihahi

HOLY CRAP annm!!!! Are you an internet shopper like sbelizabeth, or do you mean you "recently" bought a recliner I'm kinda scared now to make anymore suggestions....but then....maybe some seriously good chocolate is a necessary at home recovery item I would add to the list....and you can eat some for me Likely the woman and her husband still have bc issues they have not resolved and confronted, and your prescence brought that to the "fore" for them. I'm betting it really didn't have anything to do with you, personally, but I can certainly understand how it made you feel. 

Marsha...thanks for the list...I'm not sure how current it might be though, but certainly a good starting point! I know for absolute certainty, that there are three skilled ps in Calgary, Alberta, Canada, that have been doing free flaps (Diep and Tram free) for a number of years, that aren't on the list.

mammalou....awesome news. I have no doubt you are completely exhausted, and may feel for a few days like you've taken a step or two backwards in the energy/activity department, but you will be so happy in years to come, that you were there! Shows how important your family is to you.

nihahi

ps to annm......I'm sure you looked gorgeous!!!!!! I repeat, I don't think their problem was with you....it was with the large "elephant" in the room that they haven't confronted and moved on from.