DIEP 2011

treesprite

beacher . . .depending on how far back you read, there is some super funny stuff . . . my family thought I had lost my mind when I would laugh out loud and almost start crying from laughing so hard!

one of my all time favorties is from SusanMayoFl . . ."get that thing away from me!"   . . . .ha ha ha . .I still use that line on my DH occasionally!

There is a lot of hope!

Kathy 

bdavis

Cookie... I could do all that ROM stuff... and my PS encouraged me to listen to my body.. I could reach up, but if it hurt, then stop... they suggested crawling the fingers up the wall... If you feel the pain a bit right under the breast, that is where they stitch the flap... don't want to rip any stitches... I did have a complication, but was more related to the MX and the skin being too thin, and had a re-do at one month post op,

carol57

Hi Cookiemonster,

Keep in mind that any breast surgery increases lymphedema risk, and if you have already had rads, your risk from surgery is increased even more.  If you had nodes removed--even one--the risk goes up.  I say this because lifting the arms above shoulder level for the first week or so can add to the lymphedema risk.  The only study I have seen on this was done with women who had nodes removed, but if it were me, I'd be super cautious and not raise those arms above shoulder level for at least a week, even if zero nodes were removed.

Of course, restricting arm movement also protects the flap, but if for any reason your PS suggests it's ok to do immediate wall-walking or similar ROM work, ask about the LE risk, or just defer that ROM work for a week as a super abundance of caution.  If you don't have LE, you surely do not want to get it!  I have the one study as a pdf; if you'd like to see it, PM me with an email address and I'll send it to you.

Carol

CookieMonster

Thanks for the info everyone. PS says that I'll see PT in the hospital and I'm sure they'll give me direction on exactly what to do and what not to do.

I had nodes removed with LX #2 in late September, so I know I'm at higher risk for lymphedema (yay! - sarcasm).

I know that the doctors and hospital have done many many many of these so I'm in good hands.

goldlining

Question for the other-siders:

I had a big, big business deadline for this week, just in time to have next week to decompress prior to Dec 15 DIEP. Due to incompetence outside my control, the big video conference is delayed to a week post-op. I am sure by that time, I will be happy to be driven to a different set of four walls to sit, and I don't mind telling the client I've had surgery and excusing my casual (button front!) sweater, but will I be able to sit in a chair and have a lucid conversation about work topics? More importantly, wIll I be able to have my hair washed (at hairdresser, leaning back into the sink) say, six days post-op? 

bdavis

Sitting at work, yes... leaning back at the hairdresser... not sure.

carol57

Yes to all questions, but make sure you allow time for naps before and after big activities like going to the office and going to salon for a 'do. You can do these things, but energy depletion is surprising. Don't over-schedule and you'll be fine!

Jerusha

Goldlining,I would add...sitting at work...possibly. Having a lucid work conversation...I wouldn't count on it. One week after DIEP you are quite likely to be on narcotics for pain, having trouble sleeping and not feeling like straying far from your bed, couch or recliner. You will probably be very easily fatigued. Some doctors will have you showering the day after surgery and that includes hair washing.( I did not need assistance in the shower at any point). Standing in the shower, if you are allowed, will be more comfortable than tipping back in a chair. Tipping your head forward over a sink and having someone wash for you would be my second choice. The daily rituals of drain emptying, dressing changes, scrunching into compression gear, hand-washing the garments every day , etc. is quite exhausting. You are likely to feel like you need a nap after "getting ready", rather than going off to work. Even more than the physical stuff, I think it is psychically hard to focus on the outside world. Recovery takes amlot of mental energy. I would say that women who have gone back to work at ONE week are few and far between. Not realistic, in my opinion.



Carol57, Can you post the reference for the study you mentioned. I'd like to look it up and I bet others would too. (Just give authors names, where it was published, article name, dates). I am really surprised at the data and very curious about the source. I've read a lot about LE and have never come across anything like this. Thx.

carol57

Honestly, I could have done a web conference after one week, but of course, we're all different.  The article about arm exercises is 'A randomised controlled trial of two programmes of shoulder exercise following axillary node dissection for invasive breast cancer,' Jaquelyne Todd et al, Physiotherapy 94 (2008) 265-273.  I don't have a link --the article was sent to me in pdf format by an instructor at one of the major lymphedema schools.  Again, it reports on a study of women who had axillary node dissection (comparing a group of women who did traditional ROM exercises within 48 hours after surgery with those who delayed ROM work for 1 week; incidence of lymphedema was significantly greater in women who did not delay their ROM exercises).  If you had no node removal, the study does not address your risk of immediate ROM exercises, but I think it's considered a very good precaution to wait at least a week before raising arms after any breast surgery. 

goldlining

bdavis carol57 and Jerusha thanks for the tips. Still interested in any other veterans with reminiscences to offer. The shower concept is marvellous. I was not allowed after the mastectomy initially, then the home-care nurse said I could shower in the hour before her visit so she could change to dry dressings soon after. The idea of having my hair washed in the shower is awesome. I imagine someone else does the shampooing/blow drying? I physically couldn't shampoo and definitely not blow dry post-mx. I could reach up and out, though. Put away dishes from the diswasher into high cabinets 3 days after mx (and yes, I paid for that in extra drain-days). 

Removing, washing, and redressing in compression? I can barely put those things on NOW! 

I wonder if my PS will be pro or anti-compression.  

But  I am taking note of the fatigue issues. I have a tendency to overdo it ordinarily at the best of times, and if I can just curtail it right up to this day, I was hoping I could pull this off for an hour or two and then double up on my resting after. I'd be in a sofa, but at work, not home, and with a colleague to cover for my conversational continuity issues.

As with the dishes, I've learned some lessons about overdoing. But this is a very very important contract and I love the clients. 

Kay_G

I had neoadjuvant chemo and so had no hair to worry about washing post sx. I guess that was a good thing in a way. Gold lining, if you want to do the video conference, I am sure you will be able to. Just relax before and after. You have to be gentle with yourself. Limit the number of things you will do each day. If the video conference is important to you, just make that the one thing you want to accomplish that day (and maybe do nothing the following day). Just my opinion. Good luck with it.

c8ndygr1

Goldlining, I agree with the others. You could probably do the videoconference if you take it really slow and easy. Exhaustion and brain fog from the anesthesia/pain meds may be a problem. I wouldn't make any important decisions in that frame of mind.  Shampooing in the shower was doable for me although my arms were weak and barely able to reach up to my hair for very long (my dh had to do it the first time after surgery). There was no way I would have been able to blow dry (get help with that if you can) and maybe take care of the shampoo/blow dry the night before so you won't be too worn out the day of the conference.  Good luck!

treesprite

what would happen if you absolutely could not attend? would either things be postponed or go on without you? Could someone sit in for you?  

Is it really reasonable to work that soon after such a major surgery? What impact might it have on your healing to put yourself under that kind of stress . . you need your blood vesses happy and relaxed to thrive and keep all those lovely fat cells fat and juicy.

I couldn't have worked in any situation at that point in my recovery and it would have felt idiotic to try (although I would have been doing exactly what you are doing . . .trying every which way to make it work out, god forbid my cancer should inconvenience anyone).

It sounds a little crazy reading the posts of everyone trying to figure out how to make it work.  

Sorry, just sayin'

Kathy 

bdavis

I have to agree with Jerusha... just getting ready for the day takes an hour, with showering, putting betadine, and bandages, drains, compression and needing a break between... it is EXHAUSTING... Getting rid of drains helps a lot.. Also, any sustained raised arm activity would be difficult, like doing hair.. I didn't have any, so that was not a problem... I do think my brain was ok once off meds, but I was totally in a fog while on meds.

mrsnjband

Goldlining, 

I ditto the others. By the time I took a shower, emptied the drains, did the dressing, put the compression gartment back on, put my clothes back on it took about 3 hours and by that time I was exhausted.  After all my drains were out except one, it only took me 2 hours to get dressed & I was exhausted.  

Sitting is okay, but I couldn't lean back for almost 3 weeks. I could push back in my recliner with my feet but that was all. 

Do you have someone to drive you around? Because you won't be allowed to drive, mostly at the risk of damaging the blood supply to the flaps.  You will still at risk for awhile, so don't try to push it too much.  

Hope you can get things worked out. NJ 

Seashellie

I'm 9 days out and had my first outing today. I went to the Dr. and picked up a few things at the store (with my DH). I showered last night to save energy today and even then, I came home completely exhausted. I'm still on pain meds and found it interesting that I don't really notice any side effects while at home...but when I was out I felt fuzzy-brained and a little dizzy, too. Personally, I could not have taken an important meeting at only a week out and felt good about it mentally or physically.

ReadingMama

hi girls, i got home Mon. afternoon.  14 hour surgery, woke up in pacu at 11pm, moved to imc (1 step down from ICU) at 6am. Spent 3 nights there and 1 night in a private "regular" room.  Right now the thing that hurts the most is my  right arm as the IV leaked and it is swollen and hard and red.  It happenned on Sun and I took more percocet mon than any other day!  I don't remember pacu, but turned into Crazy girl, was awake, but not with it and my dh was restraining 1 hand and nurse restraining other, guess trying to scratch, take air tube out, everthing I should not do.  I'm glad I don't remember it, they had to call Dr. twice and sedate me.  Was out of it, but aware of myself on Thurs, but very sleepy.  Everthying looks great so far!

ReadingMama

Sea Shelly - I feel exactly as you posted.  Very tight in the belly (first thought upon waking day after was how can women choose to do this for cosmetic reasons??). Not tight while in recliner now, but yes if in regular chair or walking.  For me, my arm is the absolute worst, then belly if not in recliner, but back and butt if in it or sitting anywhere for too long.  Incentive to walk more I guess.

and my PS seems to be in the no compression camp as I have nothing on breasts of abs.

Re: ROM, my first follow up PS visit was today, 1 week after surgery, and because of my arm issue from the IV, my PS said arm elevated as much as possible, including over head like statue of liberty.  I was surprised b/c also heard no over head, but even in hospital he was not worried about it.  I have f/u with BS on Friday, will ask her.

Golding - 1 week postop for me would be today. So for me, definately not.  could not agree to be anywhere at a schedule time and actually have an intelligent conversation.  But I'm not sure if you are having uni or Bi and mx at same time or delayed diep? I had BMX, both recon with DIEP and a long 14 hr surgery.  also, it is exhausting just getting ready as some others have said, and I haven't even showered yet! For me, it reminds me of my first infant, how getting showered and dressed by noon was an accomplishment.

goldlining

Hi everyone. So much thanks for your straight talk!

There is no replacement. It is specifically me they want to advise them. I do have a colleague involved and she saved the day by being unavailable until the next day, but the client isn't available that day. I told the client I was only a week post-op by then and would need my colleague to support me, (I didn't say literally, but I meant it!!) and this afternoon they got back to me that we can postpone the video report till a day that is 3 weeks post-op. (I'm not going back to my full duties for 8 weeks but for them I will do the meeting.) I am sure it will be like night and day better. I am convinced it was the mojo of sisterhood that made the universe pull off the postponement so thanks for the psychic energies!!

NJ, your point about driving is an excellent one. I don't need to drive. I can be driven. Once I'm walking about, I can even get everywhere I need including work and hospital via streetcar as long as it's not crowded. I found after the UMX, my brain just could NOT pay adequate attention to traffic. I was physically able to drive, but cognitively not for a long time. 

I am going to have the leftover boob removed prophylactically and double DIEP.  I **so** want to rest and coddle myself this time. I never do look after me. I love this client and hate to disappoint them. I would totally have preferred the original due date that was pre-op, but thanks to the admin mess, the start was delayed. So glad it worked out this way.

Doing a happy dance :-)

One less pre-op stress! Getting my roots tuned up tomorrow so I'm all pretty because the colourist says colour won't take for a month after anaesthesia. Stumbled over a nice jewel neck cardigan that's even 10% cashmere for $25 at an off-price store that will be nice and soft over my dressings.

Ironically, I will still be stuck at the Xmas table 10 days post-op but at least this time I've told my parents and don't need to cover any more. Not so easy hiding the grenade, and I was worried about people hugging me with fragile incisions healing. I popped some staples last year people hugging me because they didn't know better and I couldn't tell.

Feeling like the universe is smiling on me.  Thanks so much to everyone.

mgm1953

Goldlining- I'm with the camp that votes for you to take it easy because your body is depleted, you're probably going to be on meds, and you need the energy to heal yourself. You need a break! Jeez.

 Hairwashing- I had DH do it. I put up a stool near the bathroom sink, got on it on my knees, and leaned over. I couldn't have leaned backwards.

As for arm lifting, my PS only warned me about not lifting over 5 lbs. At the10 day visit he said I could do the arm crawlies. Which I've been doing, and it's no picnic. I try to reach a little higher, but it's so tight and stiff. I tried lying on the floor, arms outstretched and palms up, and moving my arms up along the floor towards my head and OWie. No way.  But i remember how stiff and tight i was post lumpectomy, and eventually, gradually, things improved. I'm so impatient. After reading the warnings on this list i feel like i shouldn't push it very much, just gentle stretches every day. I'm stiff and sore when I sleep on the flap side as well.

4 wks out I'm still tired when I take walks, way more winded and weak that before. But i can walk faster and i'm more flexible.

seashelly and readingmama: yay, you've done it. i'm not completely comfortable in the abdomen but WAY looser than I was the first coupla weeks.. hang in!

 xox

bdavis

About 7 weeks post DIEP I participated in the Avon Walk in NYC... It was a 40 mile walk, of which I did 23 miles... and only because of a foot problem... It amazed me how normal I felt. It was 7 weeks post DIEP, but 11 weeks post BMX... I think the BMX is more limiting than the DIEP...

Just_V

I found my June surgery (UMX/TE placement - two nodes removed) very exhausting and had some recovery failures from it b/c of not resting enough... In Nov, I had a proph UMX and double DIEP - by day 10 (drains out at 8) I was at about 75% - now four weeks out I feel about 90% - really pretty good... I think those node removals really play havoc and cause a lot of issues...I know they need to test but I think that is a lot of what causes the pain ..).

Goldlining.. this second surgery - it was 9 hours - after three days in the hospital, my sister came down to care for me and let me do NOTHING... that is the best - as everyone is saying, your body simple needs rest (sleep - not lying there watching TV or reading - sleep) to recover.  I know that the rest I got, along with the no-node removal, is why I feel so much better now after a long surgery then I did back in June.

RetiredLibby

Oh Goldlining, I think that is great that your meeting date was moved back to 3 weeks post-op!  You will be so much better off!   I had a BMX with immediate recon and because of circumstances unique to me (plus an earthquake mid-surgery), my time on the table was 20 hours.  One week post-op was my first shower and hairwash (DH did the hair) and my first post-op visit.  I would in no way have been able to conduct any kind of work meeting anywhere, including my house!  I made it to the post-op visit with DH (he drove and we only live 6 blocks away from the hospital).  I was so energized by the visit and the removal of one of my six drains that I was "up" and chipper for a day after -- until I crashed so hard I had to go up the stairs on my hands and knees and didn't get out of bed except to go to the bathroom for 3 days afterward.  I am 15 (!) weeks post-op and still fatigued and working about 3/4 time, some days from home.  I've never had a lot of reserve strength, so I am not a "normal" case.  I'm fit (they complained in the hospital that I was too muscular to get enough fat to give me lovenox shots in my thigh!), but not very strong in the reserves department.

ReadingMama, SeaShelly, welcome to the other side!  ReadingMama, I hear you about being out of it.  I was with it, but the dilaudid gave me terrible hallucinations (my late mother, Ricky Nelson and Jackie Kennedy visited me in the ICU!).  My belly incision hurt the worst, and I kept saying groggily to the PS, "And people do this sh*t for FUN???!!!"  He laughed every time I said it. 

I'll be interested to see what happens to me in Stage II (tentatively sched for mid-Feb).

L

treesprite

Goldlining - so glad it worked out for you! 

Going through this bc journey is helping me learn to say no much more often, to set limits and boundaries that protect my health and my well-being and to put myself first a lot more often than I used tol. Still have a LONG way to go.

Cheers and healing energy to everyone recently through their surgery! Let your friends and family or hire a teenager to do your holiday chores and no holiday cooking or cleaning unless you want those drains to become your new traveling buddies. I had a drain in for six weeks after my mastectomy which was the end of October. For some reason I thought I could do all kinds of things 'cause I felt good. ha ha . . . .I could do them, but I paid the price in my healing. Also had an incision that wouldn't heal and ended up leaving me with skin damage.

Happy Libby: love that you were cracking up your doc! I love the post op drunk girl routine . .so silly! 

ReadingMama

Good news and bad news at 1st f/u at PS yesterday.  3 of 4 drains pulled - yeah! I only thought 1 would come out.  Bad news left breast is very red and definately infected.  He switched me to stronger antibotic and drew around the redness.  Not getting any worse this am definately.  DH and I both think a little better, but we are not sure if that is because we want it to be. 

bdavis

Meegan.. who is your doctor again?? Small?

Seashellie

Meegan - So sorry to hear about your infection! I hope the antibiotics clear it up quickly for you. Yeah for getting 3 drains pulled though! I had 1 of 2 left pulled yesterday. Isn't it a great feeling?!

regenschirm

Plans for immediate recon are on hold for now. After getting a different perspective from the general surgeon on wed this week, I am heading to MD Anderson for an opinion on the whole thing. Looks like I may delay recon to a later date when we are certain of the final pathology. What a roller coaster! Getting to the point that I have no idea what to expect.

ReadingMama

Hi Betsy - yes, Dr. Small, I love him!  He has never lost a flap, so I hate for it to me, of course for my own reasons also! I seem to fall into all the low statistics categories, great, right?  Both he and BS have never seen an infection in a non-implant recon.

It's still red, but had gotten no worse, no better either, but no worse.  Had f/u BS appt today, so she looked at it also and agreed it didn't look worse than the lines he drew.  I see Dr. Small again on Monday.

Both breasts looked great day 1 and the right is great, so healthy and perfect, on the left side, the flap looks great, it's a healthy color, its just very red the whole bottom half of the breast and a bit on the sides.

beacher4209

hi! Has anyone on the west coast or actually anywhere heard anything about Dr.Jay Granzow? I was looking at his website( i know dont judge by website) but he seems to have alot of knowledge and experience on flaps, microsurgery.....ANYONE out there with a west coast ps u would recommend??? PLEASEEEEEEEEEE