DIEP 2013

Hello ladies!



I have been reading for over a month, starting with some of the DIEP 2012 posts, but then jumping to the 2013 when I figured out you were all over here.  ;)  I have been working my way through the posts, but finally skipped up to the present because since I started reading, I am now post-surgery, and wanted to share my story with you, in hopes it will help someone out there.  This post turned into quite a lengthy novel!  Sorry for hijacking....!



I hope that Faith is reading as we have the same doc/hospital!!  :)



The Basics

Diagnosed in February 2012 - triple negative...  neoadjuvant chemo starting in April, followed by BMX in July with tissue expander placement pending rads decision.  After much deliberation, I passed on the rads.  Earlier I read someone else passed it also - can't remember who it was, but would love to have a conversation with her!



Surgery in Boston - choosing the DIEP

I am in CT, and though there is a surgeon at UConn Health and one in New Haven that do DIEP, I chose to go to Boston.   My PS in Hartford had vaguely mentioned this "other surgery" similar to TRAM but without the muscle involvement, but really played it down and offered to send me to the guy in New Haven for a consultation.  I declined.  When we booked my surgery, I found out later that he had ordered my tissue expanders without waiting for my decision - had not even decided uni or bi at that point.  Subsequently, I canceled that surgery and went for neoadjuvant chemo, both to get the cancer under control (having discovered it was in 1 lymph node), as well as to buy myself some time with surgical decisions.  I had visited Dana Farber for 2nd opinions during my diagnosis and decision making stages.  When making an appointment with a breast surgeon up there for a third (maybe 4th?) opinion on my MX (Dr. Golshan - wonderful - director of breast surgery) it was his assistant that mentioned the DIEP to me and got me on this track.  She only mentioned it to say that if I was interested in it, I should get on the schedule because it was a couple of months waiting time.  Interestingly, both my oncologist and breast surgeon at home in Hartford - both women - were very in favor of the DIEP, saying that the results are much more natural, even though it was taking my surgery away from the BS here.  



So, while going through the chemo, I was able to do a little research on the DIEP and met with Dr. Golshan in Boston and his recommended PS, Matthew Carty.  (Faith, your doc, yes?)  Caterson would be the other PS choice, but she was going to be on maternity leave at the time of my MX.  Really impressed with both docs right from the start.  Because the decision on rads would be up in the air until the path report came back, we did a BMX with tissue expanders.  This would enable us to go with any route for reconstruction - implants, DIEP, TRAM.  I really did not want the TRAM because of ongoing back/neck issues, and preferred to avoid having implants for the rest of my life.  What brought me to Boston was investigating the DIEP in the first place, but I promised to keep my mind open as we went through the process.  The BMX was done July 2012 at Brigham & Women's hospital, attached to Dana Farber Cancer Institute.



Deciding Uni or Bi

I was very on the fence for one or two breasts...  tumor was on the left, some suspicious cells on the right were benign on biopsy, but I was still concerned.  Believe it or not, I was scheduled for both, but even on the way to Boston at 3 am I was looking up articles on the iPad trying to decide what to do and reading aloud to my DH who was driving.  What got me in the end was that though survival rates would not be affected, recurrence rates would.  What that meant to me was that they would catch it sooner and start treatment right away...  REALLY?  Like I really wanted to start this all over again?  That and the fact that the DIEP is more or less a one-shot deal, (not understanding at the time that there could be other donor sites.)  So - BMX it was!  I could have waited on the prophylactic side, but earlier on Dr. Carty had explained that if I was going to do 2, he could obtain better results/symmetry by having both go through the same process.  



Minor Complication

However, there are no guarantees through all this, right??  The healthy right side actually ended up being compromised during the MX, and having come out of surgery and brought to my room, visited with my family including my daughters (11 and 14) who would be staying nearby at my sister's friend's house - after everyone had left but my husband, they took my back in at 8 pm to redo the expander placement.  Doc said he never regrets going back in but would regret if it caused a problem (by problem I assumed bleeding, infection, necrosis, etc).  



That side needed much more care - some borderline skin necrosis requiring the silver sulfadiazine cream to prevent infection on a gaping hole (kind of small, but still).  It all healed in a couple of weeks, though it did leave a bigger scar.



Although that side never looked right during the TE time period (8 months) being pushed over to the side with swelling under my arm a little, he has assured me that through the DIEP and Stage II he will fix it with no problems, and the scar will change, as well.



Pre-Op Imaging and Free Tram Waiver

Dr. Carty does do a CT scan to check viability of vessels.  (Faith, when I saw you were recalled for an MRI, I was afraid to hear what you later said - they had found something else suspicious.  But sometimes, you have to look at these things as positive because they may not have spotted it otherwise!)  It makes sense to me to have some idea going in whether or not it will work out.  Of course, last minute discoveries are always possible, but it was reassuring for him to tell me that my anatomy was good to go!



I did have to sign the Free Tram waiver when I went for the Pro-Op visit at the hospital...  I did not think about not signing it, even as opposed as I was to doing the Tram.  He assured me that it happens in less than 1% of cases, and they would do the muscle-sparing if it was needed at all.  He also said that with my CT results he was not concerned.  



Prepping for Sugery

I am beginning to think we are all sisters in being Type A personalities!  Reading the questions lists and talking about cleaning, organizing, and To Do lists is familiar....   I think there are some great questions lists here back in February.  I also found a great "bring to hospital" list on MarnieClark.com: http://marnieclark.com/tips-for-surgery-useful-items-to-take-with-you/  I like Marnie's approach for integration with 

traditional medicine.  Great website if you haven't found it yet.



Really I brought more than I needed, and didn't even come close to Marnie's list.  What I did use were my own pj's - button up shirts and loose pants, which I was able to use once the catheter was out - slippers, robe for walking the hallway, headbands for my chemo-curl short hair, my glasses, phone & charger, iPad for Netflix (TV did have free movies on it, but I have been working my way through season 8 of Grey's Anatomy -  interesting choice for hospital viewing!)  I wish I had thought of the back scratcher someone else mentioned!  I also wish I had brought my acai juice because I did have a fridge in my room and did miss it.  



Someone talked about underwear earlier...  I actually loved the disposable paper-like panties they had in the bathroom!  Some of this was because - lucky me - I got my period on day 2 post surgery for the second time post-chemo, so I used both Tx and pads since getting up and down was difficult those first couple of days.  (They provided pads, not Tx, so I had a friend bring me some!)  I even took a couple of pairs home with me to get through the first few days at home, because they are very loose waisted and I could pull them up over my ab incision without pain and to not get any blood (little though it was) on my own clothing.



I see a chiropractor regularly, and did acupuncture through chemo, so I made sure to get to both prior to my surgery.  Also tried to amp up my exercise, which had been nill, get more sleep, and avoided drinking alcohol to lower my toxins going in.  DH and I had also recently started to add some juicing to our diet.



The advice to get your quads in shape is important stuff!!  I did not realize it at the time, but really made a huge difference for me.  I was walking/jogging to try and get myself in the best possible shape prior to surgery that I could.  When the weather was poor, or just to mix it up a bit, I used Jillian Michaels videos - which were great because of the emphasis on core muscles and I wanted to be as toned there as possible under my fat, knowing that it would be 6 weeks post surgery before I could work core again.  Of course her videos also included lots of various squat exercises.  Once home, the squats have been amazingly valuable in place of bending over to pick things up, put a dish in the dishwasher, move laundry in my stacked machines, etc.  



I was told no nail polish, even on toes, so my mani/pedi is waiting for post-op when I can drive and take my daughters out for a girls' day.  :)



And of course, I did the big grocery shopping (BJs warehouse style), caught up on all the laundry, and made a huge listed schedule for "Uncle Mike" who would be staying with our girls.  (We have a cleaning service, so I was not worried about that part, but lo and behold - while I was in ICU she texted me she'd be taking some time off to have her baby....!  The nerve!  LOL ... so my sister cleaned before I came home for me, but the house is not clean right now and I'm trying to get a temporary replacement...)



Meditation

I swear by the Peggy Huddleston Prepare for Surgery, Heal Faster book and CD.  I used it for both surgeries.  It helps to put you into a relaxed state leading up to and during your surgery, and also to help post-up with healing, relaxing, and for me - sleeping.  I ripped it into my iPod and had it on repeat for the entire surgery, as far as I know anyway.  There is research that shows pre/post meditation helps with pain management needs post-op.  I am a firm believer in a positive attitude helping to bring positive experiences... I know it is not always the case, but the more you can pre-empt your own perceptions, the better!  I also played it at night post-op to help me sleep better, both in the hospital and even at home.



The Hospital - Surgery Monday 3/11/13

Since we had a 2 hour drive, this time we stayed in a hotel the night before, and so that my DH could go back there to wait during my 8-12 hour Bilat DIEP surgery, and to sleep for the 1 night I would stay in ICU.  Arrival at Brigham & Womens was 6:30, in a very crowded waiting room.  Then we had to go back and wait because my OR was used overnight for an emergency, so we were waiting on clean up.  Finally in pre-op, visited by anesthesia team, IV placed (one of them) and of course my doc came to mark me up.  This did not surprise me since we did that at the BMX in July.  However - I was surprised when he had me stand up, then ducked under my gown to mark up my abdomen, flashing me towards the resident standing behind him, saying, "This is where all dignity goes out the window."  I think he just wanted to get it over with as quickly as I did...  I know you're lying there pretty naked on the table during surgery, but it's a little different when you're awake!



Because I have had slight issues with nausea in the past, they gave me a patch behind my ear that stayed for a few days.  Interestingly, we think it was causing vision issues for me because it was odd when I put my glasses on in ICU that everything was more blurry than without!



I had my PH meditation going in the pre-op room while we waited.  At some point they started the meds and I vaguely remember kissing my DH good-bye before going under.  I believe surgery started by 8 am, and I had the full 12 hour experience!  No issues under asethesia for me with either surgery, both very long.  Just felt like a long, much needed nap at that point.  I like the explanations that Nihahi has given previously to the anesthesia.



I awoke in ICU late Monday evening, with my husband there.  The next 24 hours are very foggy, in and out of sleep in ICU.  I did have drawing all over mer - including a big marked up circle on my chest that said "No Pressure here!"  I looked back at my text messages and found some very lucid conversations that I do not recall having at all!  Including telling my DH that PT had me out of bed and in a chair at one point.  They were checking me frequently with the doppler to keep an eye on the flap - nurses and residents I believe.  I remember seeing Dr. Carty in ICU late Mon night post-surgery, and perhaps again Tuesday morning. They moved me to my room late Tuesday, to a floor where the nurses are specially trained in DIEP recovery.  My husband was able to "move in" with me and sleep on a pull-out chair thing, and set up his "office" on the windowsill with his laptop on the wireless network.



I was very, very itchy when I woke up - which is why I wish I had thought of the back scratcher!  The same thing happened post BMX in July.  I do have an allergy to pennicillin, so they switched my antibiotic and it improved.  Or it could've been a reaction to anesthesia, or the laundry detergent on the sheets....  not totally sure.



When I was finally really awake - Wednesday morning I think, I discovered how "hooked up" I was...  IV for meds (antibiotic, antinausea, and fluids), pain pump for on-demand meds, Vioptix monitor with wires attached to both breasts to monitor oxygenation to the flaps, and catheter.  My legs had the compression sleeves wrapped around them.  Yes, I felt like I was run over by a truck, but it does pass.  I liked the catheter because it meant I didn't have to get up in the beginning...  ;)  I had 4 drains - 2 breast, 2 abs, and something no one else has mentioned at least up to where I have read... an OnQ pump with slow flowing bupivacaine in my side for a nerve-block.  I called it my ball of happiness because it did keep my pain management easy.  They put it in a little black pouch that looks kind of like a fanny-pack.  Lucky for me it fit perfectly in my robe pocket.  I kept the drains safety-pinned inside my PJs most of the time, but some days I put on my MX cami they gave me from Dana Farber that had pockets inside.



I think Day 2 or 3 Post-op (Wed or Thurs) they removed the catheter and had me getting out of bed to use the bathroom, move to a chair, eat.  At first I was on clear liquids but by Wed I was eating.  Funny on Wed I ordered real food, but Thurs/Fri I reverted to broths and easy stuff because I just preferred it at the time.  The more I got up and about, the less they made me use the leg compression.



Each day got a little easier, walked a little more, monitored how much I was drinking.  At some point the pain pump disappeared and I got oral meds.  I got arm/shoulder exercises from PT, and we tried the stairs (was not a problem at all.)  Carty does not let you shower AT ALL, so I had "warm wipes" baths from the Nurse Assistants.  I was happily surprised when she pulled out this shower cap shampoo/conditioner combo that you scrub on your head and does not need to be rinsed.  Sounds weird, I know, but at least my head felt clean!  I was discharged post-op day 5 - Saturday.

 

At Home

Once home, I did not have a problem getting upstairs to my room, but for the first few days I only ventured downstairs once a day.  Luckily I have a bathroom steps away from my bed!  I did have a foot stool next to my bed because it is a little high.  I have slept in my bed, with a couch cushion under my knees, and on a wedge pillow (purchased post-MX, not expensive) covered in my own fluffy pillows.   I also had small pillows at my sides to prop my arms on and cover the drains and OnQ ball.



We have had lots of help at home... do NOT be afraid to take the help!  My friend had set up a LotsaHelpingHands site for me back during chemo, so we put that back in action to arrange dinners.  We've had great help with rides for my kids and a few grocery trips here and there to fill in as needed.



My DH helped me with a couple of sponge baths in the tub and washed my hair with the hand shower until my post-op appt (Day 10) when Doc removed 3 of the 4 drains and the OnQ ball and said I could take a real shower!  Yeah!  Turns out the OnQ pouch was a great place to put my remaining drain and hung it around my neck to shower.  I did not need a chair, but we do have a hand-held shower head that is attached lower on the wall, so that is what I used instead of the overhead.



I have one ab drain left, which should be coming out in the next couple of days.  Can't wait!  But honestly, with the first 3 gone, this one is just a minor nuisance.



For meds - I am down to one Oxycodone at night, and Tylenol throughout the day.  I am also on Colace (stool softener), aspirin (for blood clots), antibiotic, and probiotics (which I found interesting that they suggest!)



Each day I have tried to get myself moving.  We live on a big circle, so as weather has allowed and I've had someone to accompany me, I've gone out and done a few loops.  Today, exactly 2 weeks from surgery, my mom took me to see the chiropractor and we visited the local market to get some good produce.  Hope to be able to drive by the end of this week!  Carty said no narcotics with driving, so I'll stop the oxy when the last drain comes out.



On that note- a friend who had a TRAM over a decade ago had suggested that I take pain meds when going to have the drains removed because for her it was very painful.  So after my BMX I saved one oxy for drain removal day, and did not feel a thing as they were removed.  I decided not to chance it, and when I went last week to have the 3 out post DIEP, I also took an oxy on my way up there, about 30 minutes before arrival (I have to take it with food, fair warning).  Again I did not feel the breast drains really at all, and only a bit of sensation in my ab as that was pulled - but no pain.  So, I plan to do the same thing with this last one!



Clothing

No compression garments yet, but they will give me a binder when the last drain comes out, and must wear for 3 months I think.  I will ask about the Marena garments many of you have mentioned!  For now I have been wearing soft cotton tank tops under my PJs that I can pull up from the bottom.  It gives me something to pin my drain to and still put under my PJ top, and makes me feel a little more held together.  ;)  But definitely no bras allowed!



At home I have continued to mostly wear my button up jammies and loose PJ pants.  If I go out, I zip up a big hoodie (keep stealing my DH's) over everything to hide the drains.  I do have the surgical cammies, but they really do fit oddly and when I had 4 drains it was ridiculous.  I wore it a few times when I really needed to, again with a big hoodie over it all!  Insurance covered 2 surgical bras and 2 camis at the time of my MX, and Dana Farber also gave me a "Jacki" jacket which they have through donations.   I wore it to go out to a show my daughter was in last week. http://www.alittleeasierrecovery.org/



Planning this week to continue lots of rest, rest, rest!  Hoping to be more mobile next week, longer walks, driving, etc.  I luckily was able to take 6 weeks off of work, so I will have several weeks to get life back in order, catch up on a little work from home, and be a mommy before I have to turn on work-mode in full force.



Looking ahead to Stage II

My doc says 3 months wait for Stage II.  We have not fully discussed yet what it will all entail, but he has mentioned contouring, lipo, fat grafting, nipples.



High Beams

I am so glad that sbelizabeth asked awhile back about the perpetual headlight issues with recon nipples.  This has been one of my concerns, as well!  Post pregnancies and breast feeding, I had that issue and from then on always had to wear a padded bra/bathing suit.  I am sort of looking forward to getting around that problem now!  Not sure if the 3D tattoos will be enough for looks.  Additionally, I had rather small areolas/nipples - but now my flap paddles are rather large, and I'm concerned that the scarring left behind will be always visible unless they make the tattoo large enough to cover them.  This is all about vanity, I know, and only me and my DH will really ever see them....  just curious what experiences others have had with this part.



And that is the end of my short-story length post!  I started writing as I was reading other posts and things would come to mind....  Again sorry if it is a hijack!!



Sending lots of gentle cyber-hugs to those in recovery and those awaiting surgeries!!

Jeannie

Jeannie... I am one who turned down radiation, but it was never suggested I get radiation if I had a MX... It was just suggested to have lumpectomy and radiation, they were not in favor of the MX.. thought is was overkill.

Jeannie ! Yes we have the same PS I am thrilled to hear your short story it was so comforting to know that everything went well with Dr.Carty .

So you went home with the Qball still in ?



Thanks again it was great to get the inside scoop so to speak.

Gini.....welcome! No fears of being charged with "hijacking".....boy, it was like reading a novel ! So glad that you can share your experiences with us, and that you have specific, and supportive info for Faith! Makes a world of difference I think, to have feedback from other ladies relating to our own docs. 

Update on the "updating issue"....I am still working with the moderators, on finding a workable way of keeping the surgery list "active and updated". Originally their response was that it was in the hands of Bleugirl. Then, they suggested I could do an updated list, but as it would just keep getting buried in the messages, I didn't feel that would be helpful, especially to new people to the thread, who might not realize how many of us there are, or that an updated list even existed. So I asked for a way that I could create a list that I would keep updated, that could get "pinned" to the top of the thread, so it could be more easily accessed. They are "working on it", so it might still work out. 

Question for you all....I think it is ironic that Gini posted and Faith was able to realize she had a "sister" who shared docs. I have often felt it might be helpful for the "non-NOLA" people, to have an idea of where else people are going for their recon diep. (NOT MEANT TO BE A "pfft" TO NOLA PEOPLE!). Obviously, it would not be mandatory, but what would you think of adding maybe the "city of surgery" along with the date.....assuming I get something worked out with the mods? Doesn't have to be specific to hospital or doc, but might help newbies realize what options are out there?????

Amazing how other people's struggles help us keep ours in perspective. My daughter, who struggles with both significant health and emotional issues, was told by her ****ing landlady today, that she would have to move out, as the landlady wanted to redecorate and do "other things". This is supposed to be a "supportive" living type of situation!!!!!!!!!!! My daughter was shattered, as she has struggled so hard to "make it on her own", and is truly not physically well at the moment. Thankfully, we have an extra bedroom in our condo, and she has agreed to come here, until she can get sorted out. We are trying to put a positive spin on it for her, in that she will be "helping me out" by rescuing me from her dad's cooking post-op, but sheesh......some people just seem to have one struggle after another. We live in different towns, and she doesn't drive, so it will be a challenge getting her in for various appts until I'm driving again, but we'll make it work. Makes me certainly get my mind out of my own "woes"!!!!!

Marty......"Breast Friends"......LOVE IT!

Gini - 

Thank you for taking time too write such a thorough post chronicling your experience. I'm one of those still waiting for a surgery date - and this post is my bed time reading. Each and every post sends me to sleep feeling just a tiny bit stronger, and after reading everyone's experiences - gives me the realization that we are all so capable, and at times I even start to get excited.

Every post has something that jumps out at me - and it's not always the most relevant issue. Last week it was Marnie saying 'It's Friday night - get into bed with your husband'. I laughed out loud.

Last night it was 'I like the cathater because....'

As someone who doesn't like tubes - I find the idea of this one makes me feel especially vulnerable. Love the positive spin, and I love that nobody seems to condiser it a big deal. It helps diffuse my worry.

I guess my brain is taking a break from tackling big issues, because I was also surprised that no toe-nail poish is allowed. During both lupectomies, it was okay'd (feet only). Is that becuase of the intensity of the surgery?  Shouldn't be a big deal, obviously, but I like the familiarity of seeing my red toes at the end of the bed.

Thank you for all the great information.

Today, my thoughts are with Judy.

Janet

Oh forgot Gini 23 loved your story!! I had alot of the same experience. Stairs no problem , bed no problem. I pinned my balls to whatevery I was wearing. Had a stomach binder from hospital. When I showered with balls I tied a cotton scarf around my waist and pinned drains to it. It worked!! Nipples I guess we will see when the time comes. Thanks for your thoughts.

Janet... I did wear nail polish (both toes and fingers) but they askd me to remove it for one nail so they could do the pulse ox... (same as what faith said)... So you could probably paint your toes, but leave it off the hands... or go pale.

Hey ladies just wondering what the increased protein helps with ?



Also yesterday my doorbell rang and it was my mailman.. my dh cousin and aunt made me some recovery items ! Two zip up hoodies with interior pockets seen in and a sleeveless tunic with a shrug made specifically so that it wouldn't interfere with IV's so sweet maybe I'll pass those on after recovery.

Thanks ladies for the night sweat answers!  Guess it's my body not liking all the trauma it went through.  I didn't go with any nail polish just in case (no one mentioned anything though pre-surgery).  I figured, I'm treating myself out after recovery (hair, nails, etc). 

Geralyn - those aliens will feel totally normal soon.  Give your body time to adapt to the new normal and you won't remember what the old ones were like.

Wow, you are almost at my back yard, Cherrie! Hugs to you as well.

Major hugs for you nihahi! April is right around the corner and soon you will be sharing your healing stories and getting some decent sleep .



Geralyn I feel you on the weird boob feeling. Mine are still pretty hard feeling...



Ladies I feel like I have one of the most unrestricted PSs here, just wondering if its the same for you all? Reading all the other threads, I see rules about wearing binders, lifting restrictions, no underwire for x amount of time, etc. etc. yet today after my followup after 2.5 weeks, I have no lifting restrictions from the PS, cleared for light cardio, cleared to wear underwire bras and so forth. Only thing is to avoid ab exercises (no complaints there!). Maybe like everything else on this BC thing I'm over thinking things....

"... change of address" another great way to put it, sbelizabeth. I like it.

Nihahi - I loved your analogy that "In the meantime, we can keep throwing 'life preservers' to each other, as we are all in the same stormy seas..."



Being "in the same" boat does not seem accurate because we are all in our own little boats trying to navigate the waters of our own personal journey with BC. BUT - we can toss each other the life preservers!