DIEP 2013

Well I am home in my own bed.  I am so happy.   

Getting used to the binder which is sort of optional but I'm wearing it for now.  

My "plan" for this recovery is to do what I did for chemo - gets lots of rest and downtime and enjoy it.  My husband won't let me push it either - so I'll be good.  

A question about bras.  My doctor wants me to wear a comfy bra.  However, at the hospital everytime my binder got anywhere near my boobs (it was too big and rode up) - they freaked out because they worried about the flaps being injured.  I put on a sports bra that closes in the front - no wire and even then I started to worry was it too much?  I know there are binder and no binder docs; then docs who want you to wear a bra and those who don't.

Just wondering if anyone else had the nurses worry about putting pressure on the flaps near your bra line?

Tammy - I'm not sure if I am setting any records (3 nights in hospital) but I'm a good healer.  Always have been.  

But like I said - I try to rest but I also try to move a  little too.  All in moderation . . . I want to take care of these girls so I'm going to be careful!!!!

Hello ladies. Just a quick note to let you know that I'm recovering. I got really suck last night from eating too much and over doing it, so I just need to take it easy. Thank you all for the kind words!

I definitely heard Nordstrom's will submit for you, and am pretty sure my friend who had a lumpectomy has submitted receipts in the past.  She never mentioned a limit, but I did think it was odd considering how many women are getting diagnosed each year...  You're right, Marty - Washington would be all over it!  I am seeing her tonight, so I'll find out what she knows and do a little more research!

Lmo45 - so glad you found us!!  

sbelizabeth - very jealous of the weight loss!  I had a hard time eating post-surgery, too, and with the TEs out I figured I was good for 5-10 pounds at least.  No such luck!  Maybe 3 at best....

Glad to hear from you, Kuka!  Be well - eat light...  this tummy tuck part does make you feel full pretty quickly.

Going to a "Komen Young Survivor's Meeting" tonight near Hartford, CT.  If you are in the area and diagnosed between 20s and 40s, it is a great group!  Women seem to be coming from all across CT.  If there is enough interest, I think they want to start meetings in other parts of the state.

jp

If I find anything about post mastectomy bras I'll report back. The only requirements were to get a prescription for it (MartyJ maybe this is where the medical device part comes from maybe?) and to use the stores in their network (only one in my area is about 30 miles away).

Sooooo good to hear from HHcats, Kuka and sbelizabeth...and from everyone else. 

Liefie..my PS is a no binder guy, nothing bra-wise for a couple weeks, then anything I want, as long as there isn't a lot of compression. I've just been wearing light, loose camisole, without shelfbra in them. I'm small, like I asked for, so don't feel any need for support at the moment. 

I almost didn't post today, but I value the honesty here, so decided to anyways. It's 5pm here, and I'm still in my pj's. First day since discharge that I haven't gotten dressed. I'm having a really, really tired day. I know that physically, I'm doing well....can lie in bed comfortably with just a pillow behind my head. Walking what "looks like" upright, though still feel lots of pulling and tightness. Shoulder ROM is slowly improving. I just have that severe "disconnect" between how I feel I'm doing, and how I know I'm doing. Surgery was 2 weeks tomorrow, and logically, I think I'm doing well, and that's what my doc and everyone says, but I feel like I should be doing better, and doing more. I WANT to be doing more!!!! I've decided to let myself have a "poor me" day, and get back on the horse tomorrow.

HHCats - so glad you are home and doing so well!

I don't have to wear a binder either or a bra.  My "breasts" are pretty solid and I don't really feel like I need a bra right now.  Will that change?  I am wearing some light shapewear panties that feel good on my abdomen incision though.

Kuku - Yes, eat small meals slowly.  I still can't eat much and if I do I feel sick to my stomach.  

Nihahi - please give yourself time.  What I have found is that I feel good and then I get tired all of a sudden.  I still do 5 weeks later but not as often and it does get better each week too.   It's just not as fast as I'd like to get me back to normal either. 

Sea_Laurel.... I traveled for surgery (went to New Orleans) and they ask for you to arrive two days prior so you can have pre-op testing the day before, and then stay in town through post op one week after surgery. So, 10 days in all. Eight weeks in Boston seems a little much... It would drive me crazy. I was driving 2 weeks post op  - and boredom and expense would make being away from home for 8 weeks not pracical for me. I took a couple of extra days so was gone for 12  days, and that is the outside limit for me.

Nihahi, thanks for answering my questions - appreciated! It will actually be a huge relief if I don't have to wear anything tight, because I just hate it. I'm also small - B cup - and hope to be the same after surgery. Will be really weird to have bigger boobs all of a sudden at 58, and I won't know what to do with them. I often go bra-less at home anyway, so it will be nice post surgery not to have to wear anything. Still have the camisole with pockets for 4 drains that I used after mastectomy. That will probably come in handy immediately afterwards.

PJ's at 5 in the afternoon is fine, and you are a recovering patient after all. No fun to feel so tired, and that's the one thing that bothers me about the surgery. Just when I have my strength back, I lose it again, but I guess I can never feel as weak/breathless as I did on Taxotere. Oh well, it's the nature of the beast, and we just have to soldier on. Hugs to you, sister!

Kuka, HHCats, sbelizabeth, speedy recovery to you all!

Mammalou... If someone has active cancer, they reserve Tuesdays I believe for them and hold them open. and it depends on the time of year (end of year is very busy), but I would say that they probably could get a surgery scheduled in 2-3 weeks at this time of year. Of course it depends on if you want a specific doctor... that could be limiting. Things that need to happen before surgery are pre-surgeical tests (blood work, EKG, and chest xray) and stop asprin and other drugs 2 weeks prior... and of course they need to get pre-certification from insurance. Some are quicker than others on that. The best thing to do if you are interested in going there is to submit your paperowrk to Liz. They will then send you instructions on how to photograph your body (no head). I think when I called I had a surgical date given to me within a week (for 2 months out as I was in chemo) during the week I wanted with the doctor I wanted. Now that I have done it, all doctors are excellent.

Cherrie!  10 years!!!  THAT is inspirational!  Enjoy your walk with hubby and friends.  

Update on the bras.... my friend said she heard it first on Oprah, and then did it.  First 5 are no questions asked - you do have to fill out a form and use a mastectomy diagnosis (even for girls with lumpectomy only.)  After that, Cuetang is right - the doc has to write you a prescription.  She gets them as needed and we have same MO so I guess that's good for me!  Not necessarily special surgical types of bras - pretty Victoria Secret ones!  I am trying to look it up, but can't find it on Oprah (she saw it awhile ago...) and a quick search of the web gave me this:

http://www.afittingplacemn.net/Insurance.html

The Women’s Health and Cancer Rights Act of 1998, WHCRA, mandates that every insurance policy allows coverage for post-op mastectomy bras and forms. Mastectomy benefits may have a yearly deductible and may require that you pay co-insurance. Co-insurance is when health costs are insured for less than the full amount and the patient must pay the difference. For instance, the company may cover 80% of your expenses after you pay the deductible, leaving you to pay the other 20%. This 20% is also called a co-payment or co-pay. But any required deductible and co-insurance must be like those the plan uses for other conditions it covers. So, if a plan pays 80% for hospital and surgery fees for an appendectomy, but only 70% of hospital and surgery fees for breast reconstruction, that would violate the WHCRA.

Nihahi - we all need a "poor me" day once in awhile...  tomorrow is a new day!  Hopefully there will be some sunshine up there and you can get out and walk a little bit.  It will lift your spirits!

Hello sea_laurel!  If you've been reading prior posts, you'll see that several of us LOVE the Boston docs.  If you saw a "she" connected to Dana Farber, I'm guessing you met Caterson.  Very highly regarded, as is her partner Dr. Carty (my PS).  I cannot speak to the travelling that far (I am only 2 hours away from Boston).  Perhaps follow up on Marty's suggestions.  I did go back to work after 6 weeks (this week) - though only working part time this year.  I am a teacher.  Also have had a busy week with late evening events... and still standing.

Robin - ugh I know waiting for that last drain is brutal...  Almost there!

Question - did someone out there say that she was told she did not have enough belly for DIEP by one doc, but then able to do so with another doc?  I was talking to a woman in my group tonight that had implant surgery at Mass General.  She was told she could not do DIEP.  She is very slim.  I mentioned to her to look up Nola.  I am unsure what our docs at BW would say.

I will have bmx and diep in charleston next week on May 1st. I was dxd with recurrence two weeks ago. Lump only, no chest wall or nodes. This has happened so fast. Anything I need to take with me? Binders? Bras? I feel ill prepared but want to do it once a d right and be fine. So glad to hear so many doing well. Thanks for Sharing your wisdom and experience!

Nihahi - you are doing great you need to realize that.  Think about everything that happened to you prior to this surgery and factor all of that into your experience.  This is a totally weird thing we've gone through.  This is not a "normal" surgery and I hesitate to even say that becaue what surgery really is?  But it's not.  It has a huge emotional component to it in addition to the physical side.  Just making the decision to do this takes a lot of energy.  You need to allow yourself your "poor me" days and trust me I'm going to have mine, too.  Actually, I am up because the painkillers just made me stoned for 4 hours and I got no sleep which I really need because pretty soon I am going to lose it.  If I don't sleep, I can't function.  I was in bed in my nest of pillows and thinking I am in this nest and I am going to be in it for quite some time.  My hair is starting to grow back but let's face it I'm bald, I have 4 drains in me, and I look like a chemo patient.  Boy is this going to suck!  I thought about having a nice cry and realized that it would hurt - so here I am posting instead.  Another thing I've thought about the last couple of days is how isolating the recovery process really is.  Not many trips to the grocery store or to pick up the kids in my near future.  I went to Walmart on the Sunday prior to my surgery and thought "When will we meet again, my old friend?" LOL  My friends are all planning to come to me which is great but I like to get out and about and just know that it will take some time to get out and about.  Then to top if all off tomorrow I have the nurse coming - this will end up in some form of frustration for me most likely.  I've been there and done that with chemo and I fired the nurse!  

All I'm saying is have your "poor me" days and know I am across the nation having mine, too.

Kuka - good to hear from you.  Feel better.  

Thanks for the bra information from everyone, too.  I think I am going to the local mastectomy store and seeing their stock of "comfy" bras.  And I am going to do some surgery on this binder and the other one they gave me at the hospital.  There has to be a way to get support and have a tiny bit of comfort doing it!  

Robin 67 drains are a huge pain in the rear my drains are out yes. Im sorry you still have them fingers crossed for you on Monday !! Gini and I had mentioned we thought it was odd that they put you in the binder before drains were out we were wondering if they changed protocol. . either way I would think having both drains and binder would be frustrating.

Wow....24 hours and all heck has broken loose on the board!!!  :-)  Shame on me for being gone all day!

To you new ladies:  Welcome!  This board is a great place to call "home" before, during, and after DIEP.  Lots of experience here, for sure!  The main thing you need to remember is that you will second, third, fourth, and fifth guess your decision, and think you are going to go crazy.....it is completely normal!  Just stay on board, and we will walk with you all the way!

HHcats, you sound great-but please please please don't push too hard.....you have gone through hell to get those new girls.....tread lightly for a while!  :-)

Kuka!  So nice to hear from you!  (But very sorry you are not feeling well....)Looking forward to the next installment.....

Sbelizabeth-you sound amazing!  If I make it to LA to see my daughter in Studio City, I want to meet up with you in person!

Nihahi-I'm going to let you in on a dirty little secret.....after 3 months, I still have occasional "blue"days.....like HHCats said, this is such a complicated surgery on so many levels.....we all need to be patient patients and give it time.....eventually I hope to be as pulled-together as Betsy, Marty and Cherrie.....

Ladies....my bed is calling to me......g'night!

Namaste and God bless - Jackie

CRS,



I am so happy to hear you are able to have surgery with Dr. Kline. He is truly a God send.



My PT-CLT, who works almost exclusively with BC patients, told me at my appointment yesterday that when Dr K called her last week to discuss my surgery findings and care on a rare refractory cording issue I have from ALND, he was the most polite, thorough, and interesting surgeon she has ever communicated with in ten years, and when he concluded told her his concern and cared about me.



She said she put down the phone and got a high on the feel good vibes from talking to him. She said that most surgeons have staff call or if they call themselves just give a straight quick order and hang up.



When she told me this about Dr K, I started crying!



I have been "all around the country" getting consults on my natural breast reconstruction and either the surgeons didnt have the experience, or if they did, I couldn't get past their arrogance and lack of accepting insurance to feel deep trust in their care.



So difficult for all of us dealing with all things BC, but so thankful I have been truly blessed with my recon plastic microsurgeon.



Keeping you in thought and prayer for your surgery next week.



Is Dr. Baron your onc breast surgeon?

This thread is excellent source of info and support, and I would also suggest going to the "Charleston Bound, part 2" thread to meet patients who specifically have had their natural breast recon surgeries there.