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DIEP Flap Reconstruction 2017

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  • Mhud648
    Mhud648 Member Posts: 5
    edited May 2017
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    Please add me to list, my surgery is June 1st.

  • Mhud648
    Mhud648 Member Posts: 5
    edited May 2017
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    It seems like there have been so many complications, did anyone have their surgery go as planned? I'm so nervous, I keep cleaning. How long did it take for everyone to be moving "back to normal?"

    I love the list at the top of what to take to the hospital and what to have at home.

  • Beckyb2016
    Beckyb2016 Member Posts: 12
    edited May 2017
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    mhud648,

    Hi! My surgery and healing have gone very well!!! It took about 2 to 2 1/2weeks for me to feel more like myself. I'm almost a month out now and still get very sore and tired after a busy day. Give yourself time

  • JenPo
    JenPo Member Posts: 6
    edited May 2017
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    So much information here. Thank you!

  • Tpralph
    Tpralph Member Posts: 281
    edited May 2017
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    surgery small glitch but was ok in end. Had to give me more heparin blood thinner as vein kept clotting while he was stiching so took him another hour to get that fixed but no problem after that. Healing better than expected. Only used Tylenol 3 in hospital after one night in pain pump with hydromorphone (made me too dopey and nauseous I told them to stop it and just give me t3 s which they originally were reluctant didn't think it would be strong enough. But for me it was and I have a fairly low pain tolerance but know I respond well to codeine. Remember most do not have problems. They only post if they do. I'm 10 days out and walking two blocks hunched over mind you and still can't do chores except minor stuff. Need to rest alot and have afternoon naps

  • jbdayton
    jbdayton Member Posts: 163
    edited May 2017
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    Falconer, I am thinking about you today. I pray your surgery goes perfect tomorrow. Just show up and let your team do all the work. Enjoy the holiday today.

  • Tpralph
    Tpralph Member Posts: 281
    edited May 2017
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    good luck Falconer. Will be thinking about you and sending positive vibes.

    It will be over before u know it!

  • jamiens
    jamiens Member Posts: 4
    edited May 2017
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    I guess I'm finally ready to post. I've been reading this thread ever so regularly and thank each of you for sharing your experience. Here's mine and I'll warn you that it's gonna be a long one!

    I had a bilateral mastectomy with immediate DIEP reconstruction on May 4 (Thursday) with Dr. Momoh at University of Michigan hospital. I stayed in the hospital through the 8th. There were monitors on each breast (called Vionics, I think?) that tracked the blood flow so I did not have the regular doppler checks that some have mentioned. I did have the godawful Bair Hugger -- a blanket contraption that runs a current of hot air through it constantly. Having that thing removed on Monday morning was the best feeling ever.

    The night after surgery wasn't bad. I got a surprising amount of sleep. The next day and night were okay, too. I had the morphine pump. I dozed a lot. My general surgeon (Dr. Jeruss) stopped by on Saturday and said I looked fantastic, was an A+ patient, and said that this would be my worst day. I was so pleased! If *this* was the worst, I was going to breeze right on through, easy peasy. Wrong!

    Sunday morning I woke up miserable and filled with regret. I was horribly nauseous, in pain, roasting from the Bair Hugger, and unable to do anything independently. I'd been having a hard time eating the past couple of days; no appetite, lethargic, just not interested and also ended letting the pain get in front of my medication a bit. (I hadn't eaten anything besides some jell-o since Wednesday and I believe this was a major factor. In my experience, the nurses didn't really push it and I wasn't feeling hungry so it wasn't a priority in my mind. My advice: make it a priority!) Why had I elected to do this to myself? I'd made it through chemo. I was doing so well living "normally." Why in the world had I mutilated my whole body? This was a very low morning for me. Thus far, that was definitely my worst day and it was as much a mental issue as a physical one. I ate some oatmeal and some fruit and did better as the day progressed. I just wanted to share that I had an utter crisis in my mind, questioning my motivation, and experiencing regret in case anyone else has a spell like that. (I have since gotten myself back on track remembering that I WANTED autologous reconstruction to avoid implants, that I WILL heal and get back to normal life.)

    I have been following my recovery directions so carefully. No lifting, no repetitive motion (like folding laundry), no hands above my head. Whatever they tell me, I'm obeying! I am *terrified* of anything reopening so I am as compliant as humanly possible. (I tried without success to get the nurse to give me a percentage chance of dehiscence!) I started out with four drains which grossed me right the heck out. The top two were removed 8 days after surgery and the bottom two were removed 19 days after surgery. Once they were all gone I've felt exponentially better each day! Hooray for no drains!

    I took oxycodone for a little over a week once I was home and then just took it at night before switching over to just regular Tylenol.

    I do feel like I was not fully prepared for how HARD things would be. I'm a "mind over matter" person and thought my positive attitude would be commensurate to the challenge. Don't get me wrong! I know a good attitude is helping me along but this isn't something I can overcome with mental fortitude alone.

    I have an electric recliner that we found on craigslist. It has been wonderful but even the motion of reclining was rough at first. I've slept in my bed at night with mountains of pillows arranged as a wedge, side supports, under my knees. But getting in and out of bed? A real challenge for a while. (My husband's basketball shorts were good pajama bottoms because they were slippery!) On and off the toilet? Not easy. Honestly, TMI but wiping was a stretch at first, too. I did it independently but just another thing that you don't usually give a second thought. I *could have* stripped my abdominal drains on my own but I couldn't reach the upper ones well and could not have done those myself. As I mentioned, I have an unrealistic fear of my skin coming unstitched and showering exacerbates that ridiculous phobia. Thank goodness for my sweet dh helping me through my first showers. I guess I just took my ability to take care of myself and my needs as well as easy mobility for granted more than I should have.

    My best news is that post-surgery pathology shows I'm CANCER FREE! 😊

    If you have any questions about my experience, feel free to ask. Please just keep in mind that everyone is different so I'm just sharing MY stuff.

    Like many have mentioned, this is a marathon not a sprint. I'm taking recovery one day at a time. Some days are hard but I know that every day is another step of healing.

    We can do this!



  • BigSister-2015
    BigSister-2015 Member Posts: 298
    edited May 2017
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    Jamiens, I totally get your post and concerns. That was where I was at when I got my BMX. Back then, I had only talked to one PS and he told me I was not a candidate for DIEP. Too thin--he was totally wrong. So, I got implants.

    I was surprised at how a BMX floored me, even without the DIEP. I couldn't take care of myself. Without help, I couldn't even get a cup out of a cabinet or pick up a full gallon of milk.

    Fortunately, I have older kids, and my girls took great care of me and the house. They made sure I was never alone for the first two weeks. What a blessing.

    Unfortunately, three weeks later I was back in to have one implant removed because of an infection. Three months later we put the implant back in. Rinse and repeat--another infection, but this time went septic. It almost killed me and it took forever to recover from sepsis. For the first month, it was all I could do to go to the hospital each day for my daily IV antibiotic. Back to depending on my kids, who were pretty shaken from almost losing mom. But I had no strength to comfort them.

    You can imagine my mental state. My attempts at reconstruction were trying to kill me. What was I thinking? But during that time, I REALLY hated being flat--that just wasn't for me. But I was also feeling selfish at putting everyone through this for my sake.

    After deciding to continue to pursue reconstruction, my breast surgeon set me up with a PS who specialized in DIEP. The new PS was impressive and encouraged me that this was a good option.

    Five months later (December 2015), when I finally felt like I had recovered from the sepsis, I had my DIEP. My kids were turning into efficient little nurses, and compared to the sepsis, it was a piece of cake.

    I was so happy! Beautiful warm breasts on my chest. No infection. Since the first few days were in the hospital, I was in decent shape when I got home. Still took 3-4 weeks before I was doing most things on my own, but I felt good.

    Nevertheless, it was a good year before I felt like I was back to my old self, and that after many vitamins and supplements. I didn't have chemo--my tumor was so small--but the sepsis sure acted like it. And even if that hadn't happened, the stress of cancer and surgery not to mention grief over losing my breasts all take their toll.

    During 2015 I read every post on the 2014 DIEP thread. That was so encouraging. Of the 100 women listed for surgery that year, only a handful had complications. Nevertheless100% of them were happy with their choice, even those who had struggles. That sure is saying something.

    Reading through their journeys and listening to their council to take it easy (think marathon, not sprint) helped me through.

    I am happy with the outcome. My breasts are nicely shaped. They don't quite have the projection that I would like and the upper poles could use a little more, but I am satisfied. I'll check in with the PS again after my tats and re-evaluate whether we are done.

    I am glad I did the DIEP. I hated the feeling of the implants. Plus, those implants don't last. I don't have to worry about rupture or replacements every 10 years down the road. Once I am done, I can totally put reconstruction behind me.

    I am now at a stage of figuring out this new normal. It won't ever be the same, but I can choose to be content with where I am at and find the courage to face the rest of my life with a smile.

    Christ certainly is my mainstay. I neglected my spiritual health during the crisis--could hardly pray or spend time in God's word. I depended on listening more than reading, but had a terrible time concentrating. That is finally turning around, too.

    I hope my musings help a bit. Each of our paths are totally unique. As many have said, having a forum to share experiences is so helpful.

    Blessings to all!


  • MAPBB
    MAPBB Member Posts: 20
    edited June 2017
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    Mhud648. I didn't have any complications. And I'm 60 and 30 pounds overweight. I had double BMX with DIEP reconstruction surgery in new orleans.

  • Sally32
    Sally32 Member Posts: 7
    edited June 2017
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    Any recommendations for diep flap surgeon in Michigan ?

  • Falconer
    Falconer Member Posts: 801
    edited June 2017
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    Hi all- quick note to say it's day 3 since DIEP and I'm feeling better every hour. Will post more when I'm not so tired. Anesthesia always exhausts me. Hope everyone is doing well.
  • suburbs
    suburbs Member Posts: 398
    edited June 2017
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    Hi all. A newbie to this thread and I have questions. I've been through some of the past history and look forward to any feedback you could offer.

    1. ) I don't understand poles. What is this?

    2.) Has anyone asked to be made smaller? My PS said one cup size lower was a reasonable outcome.

    3.) Did I hear this correctly? 30% of DIEP flap candidates have the three perforators close enough together needed. The remainder of patients would have a muscle sparing flap surgery.

    4.) Opinions on residents participating? I asked the question and the answer was yes. I'm not sure I like this but the process is so far along and lining up two surgeons to coincide with end of chemo is not easy.

    Thoughts? Thank you

  • BigSister-2015
    BigSister-2015 Member Posts: 298
    edited June 2017
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    Hi Suburbs, excellent questions!

    1. "Poles" are the area above the breast. The breast tissue that is removed extends above the breast, so when the flap is placed the upper section is kind of flat. This is usually filled in with fat from fat grafting during stage 2.

    2. Made smaller? I have heard of several on these forums who opted for smaller. I wanted a little bigger. :)

    3. My PS liked using as many perforators as he could find. I think he ended up getting two on one side and three on the other. Before surgery we discussed this quite a bit. First off, the more perforators they can get, the better the flap will take meaning less fat necrosis (death of parts of the flap). He explained that they had to dissect through the muscle anyway even to get one perforator, so some muscle is always lost even in a "pure" DIEP. When they take several perforators, just a little muscle is sacrificed with the benefit of a better blood supply to the flap.

    I have not noticed any problem with my abdominal muscles with a little having been taken to contribute to the number of perforators found. I had NO fat necrosis. My flaps have been soft and supple all along, so I'll take it!

    4. Most DIEP surgeries are done at teaching hospitals, so residents are a mainstay. I am sure residents worked on me along with my surgeon, but the surgeon is in charge and it is his reputation on the line, so he won't let a resident work on you that he is not comfortable with. At 9+ hours, the docs need to take breaks and help each other out, so you will have several surgeons contribute.

    I am a nurse and I worked at a teaching hospital. Residents are often excellent. Frankly, having residents involved are wonderful. They ensure that your doctor has lots of hands to help, and he won't let the bad ones work on you. Trust me, they know who to trust and who not to!

    HTH

  • LMichele
    LMichele Member Posts: 88
    edited June 2017
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    Hi Jeannine,

    Thanks for this thread, though it seem kind of overwhelming right now! I wonder if you can possibly point me in the right direction: I am presently scheduled for a free flap/diep a few months from now. It would be a combo: tissue on top of smaller implants (this would be a revision to my implant-only reconstruction back in 2011). I am healthy and athletic and trying to find someone in a similar boat to talk to about whether this is a good decision... feeling scared!

    thank you very much,

    Michele

  • suburbs
    suburbs Member Posts: 398
    edited June 2017
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    BigSister-2015, thank you for the information. I found an earlier post of yours about perforators that was also very helpful. Your knowledge and professional background provide a unique perspective on the surgery. I have a couple of additional items for which your thoughts and commentswould be appreciated.

    1.) I have read that abdominal fat weighs more than breast tissue so reconstructed breasts are heavier. I asked my PS about sagging and the response was that gravity causes sagging and that they will do their best to have a good outcome, albeit both nipples would have to go to achieve less sagging and have symmetry.

    2.) If the donor site is from the navel and below, does the abdomen end up looking goofy because one ends up with a muffin top/tire around the rib cage? Is that why revisions are frequently discussed at least partially?

    Again, thank you


  • BigSister-2015
    BigSister-2015 Member Posts: 298
    edited June 2017
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    Glad to help, Suburbs.

    1. Until recently, I had never heard that abdominal fat is heavier than breast tissue. I don't feel like my foobs are any heavier than the originals. They feel funny, but I think that is mostly due to the decreased sensation from having nerves cut. That sensation does get better over time, but I don't think it will go away completely.

    I was originally a B and after my DIEP I am comfortable C's. I can go braless without discomfort, but as I am used to wearing a bra, I usually do.

    Because I am BRCA2, I opted for a bilateral after my cancer diagnosis, so everything went anyway. I have seen unilateral MXs that kept their original nipple on the natural side and managed symmetry pretty well, but your PS would know your particular situation better.

    2. The donor site is actually from above the naval down to the pubic line. They pull the skin down and reattach the naval by punching through the skin. The incision line is identical to what you would get with a tummy tuck, so since women do that just for the looks of it (I can't imagine!!), it must not be an issue. :)

    Mine looks great. I had some very slight bulging above the abdominal incision line at the ends, but that was taken care of in Stage 2. They did fat grafting from that extra bulge and from my waistline and inner thighs. He also created nipples at that time. Worked out pretty great!

    I'll attach a picture of where I am at now--18 months after the initial DIEP. I am pretty pleased with things as-is. I am scheduled for my tattoos next week with Vinnie, so I'll have to repost when those are done. My left flap is larger than the right because that is the side that was infected, so there was no expansion prior to the DIEP, so the flap on that side had to be bigger. Nevertheless, I can wear a plunging neckline and not have any scars show. :) Had I had an immediate DIEP, both flaps would have been the size of the areola and the scars would have been covered by the tats. Oh well.

    As you can see from the picture, my upper poles are a bit flat. I am considering having one more round of fat grafting to try and fill them out, but I'll decide after the tats. The tummy tuck looks quite natural. Forgive the splotches of calamine--poison ivy! Ugh.

    image


  • Falconer
    Falconer Member Posts: 801
    edited June 2017
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    BigSister- you are amazing & beautiful . Thank you for sharing your insight and images.

    I took a shower for the first time, and I'm dressed and ready to leave the hospital. The drains are sticking out all over so hope not to be too scary looking!

  • suburbs
    suburbs Member Posts: 398
    edited June 2017
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    Falconer, congratulations on leaving the hospital and best wishes for a speedy recovery. And yes, agreed that Big sister is amazing. Thanks for being brave and sharing.

    I have signed the paperwork and completed pre admission testing. DIEP Flap here we go.

  • BigSister-2015
    BigSister-2015 Member Posts: 298
    edited June 2017
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    Falconer, those drains will eventually be a distant memory. They are certainly the worst part of this whole thing!

    Suburbs, glad the paperwork is behind you. Now all you have to do is show up!

  • Rlsteadman
    Rlsteadman Member Posts: 36
    edited June 2017
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    I am scheduled for a right breast mastectomy with DIEP on June 22 for a recurrence. My surgeon did not think the left breast needed a prophylactic mastectomy. She said the likelihood I would get it in the left breast is very small. It looks like almost everyone on this site does both breasts. I am worried I am making a wrong decision. I will be 60 in August. If you had a prophylactic mastectomy can you tell me why you made that decision

  • BigSister-2015
    BigSister-2015 Member Posts: 298
    edited June 2017
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    I am BRCA2 positive, so that made the decision easy.

    There were some unilateral women on the 2015 and 2016 DIEP forums, so you are not alone if you go there.

    What does your MO think?

  • cdv4251992
    cdv4251992 Member Posts: 110
    edited June 2017
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    I did unilateral (left side only, recurrence after 13yrs). My surgeon was like yours and said bilateral was not necessary because the genetic testing came back negative. The inkling I have of maybe I should have gone bilateral is for semmetry reasons. I'll have to have something done to the right to even things out during stage 2

  • Tpralph
    Tpralph Member Posts: 281
    edited June 2017
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    i chose bilateral for symmetry and I had multiple tumors in right breast. Found a dcis hiding in same breast that wasn't picked up on any screening and I thought there may be something hiding in prophylactic breast. Also didn't want to go through the stress of mammograms in prophylactic breast every 6 months and worry. Don't want to go through this s*$& again and will lessen the risk by whatever I can. Turns out they found some hyperplasia in prophylactic breast so it may have grown something later. It was also images up the Ying yang and showed nothing.

  • songbird72
    songbird72 Member Posts: 22
    edited June 2017
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    I also chose a unilateral mastectomy. I did not have the breast cancer genes and did not want to remove a healthy breast if I didn't have to. I do admit I struggled with the decision but am glad that I chose unilateral. Good luck with your decision!

  • Rlsteadman
    Rlsteadman Member Posts: 36
    edited June 2017
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    The surgeon said mine always has shown up early in my mammograms. No history of breast cancer in family. I will be having a lift in the left breast for symmetry at first surgery. They will do more at later time if needed for when I go back for nipple reconstruction. Still not sure how I want to do the nipple. I am so nervous about the surgery. Worried about rectory, pain, and complications. I think I have looked at tomany pictures and read to much but also want to know what to expect.

  • suburbs
    suburbs Member Posts: 398
    edited June 2017
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    Rlsteadman, I chose a BMX because of the following: 1.) dense breasts, 2.) 20 + years of mammograms and diligence failed to detect my cancer early, 3.) continued stress of worthless mammograms in my case, and 4.) possibility of better symmetry with reconstruction. If I knew 10 years ago what I know today, I would have paid to have both removed 10 years ago. I know two individuals that had cancer found in the remaining breast after having endured the hell of chemo, radiation and surgery already. Finally, if the sun, moon and stars get aligned in my favor, I can avoid radiation. Losing at least a year of my life to the disease, I have absolutely no desire to save the "healthy" one.

    That's what I can live with. I respect other opinions and choices. Everything finally clicked for me after months of research. I'm now at peace with my decision. I hope the same for you whatever you decide.
  • songbird72
    songbird72 Member Posts: 22
    edited June 2017
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    I was also worried and nervous. Remember that complications happen in the minority of surgeries. The pain meds they have now are wonderful. I would say I was only uncomfortable at times, never really in pain. I had a medicine ball with the medicine going right to my incision in the abdomen. I recommend that very highly.


    I'm 3 1/2 weeks post surgery and back to most of my daily activities with the exception of heavy lifting and yoga. I am so happy I had the surgery. I know I still have some steps to go but I am already so happy with the results. I didn't realize what a psychological impact being flat on one side had for me until I got the breast back through reconstruction.

    I do have a seroma that is contuining to drain and be absorbed and a hard spot on my reconstructed breast but my PS isn't worried about those right now. She thinks they will both resolve with time. And very minor things anyone. More annoying than anything else!

    Good luck with your surgery. I will pray for good results and easy recovery. I couldn't let myself think about the surgery too much beforehand or I would've been too tempted to chicken out. I thought about it the night before but thankfully my husband talked sense to me and didn't let me.

  • kcmc
    kcmc Member Posts: 66
    edited June 2017
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    The reason I had both done, I was speaking tp a 70 year old woman who had a unilateral mastectomy 28 years ago and now has cancer in her healthy breast, she said to me honey - have hem both removed lol! That was my deciding factor and my breast surgeon said that it would bring up my survival chances by 3 percent and 3 percent is 3 percent.

  • Wordlady
    Wordlady Member Posts: 20
    edited June 2017
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    I haven't posted since before my surgery so I thought I would share what happened. I had my bilateral on 4/21 with immediate DIEP reconstruction. Very long surgery (14 hours) because I am heavy and there was a lot of tissue to deal with! For Suburbs: I also chose to go smaller. I was a DD and wanted to be a C to reduce weight dragging on my shoulders and possibly help with lower back pain I have struggled with for a few years. The surgery went fine and I didn't have any nausea, pain was manageable, and I went home in 3 days with 4 drains. One lower drain was removed in a few days. The other three I had for 2+ weeks, and pulled one out by accident the night before I was going to get them out anyway :-).

    Unfortunately the blood supply was not good enough. This had a somewhat higher likelihood of occurring in me than normal because of my weight. It was pretty obvious quite soon that all was not well because of extreme redness becoming purple and black on the outer sides of both breasts. (No infection though.) My PC monitored me very closely and I had another surgery on 5/13 to remove the reconstructed breasts (called debridement). From this surgery I went home the second day with two drains which stayed in about a week. This surgery left the skin kind of bunched up, but still present, and the new plan is to have reconstruction after I've completed chemo and radiation, likely not until early next year such as January. I will either have to do some other kind of flap, or implants, but I'm leaving that decision to later on. So it was disappointing, but now it has been almost 3 weeks since the second surgery and I am well used to the look of things and dealing with mastectomy bras and breast forms.

    I haven't started chemo yet because the tummy incision from the original surgery on 4/21 has taken forever to heal, again, likely due to my weight before surgery. So during the second surgery on 5/13, the doctor put in a wound vacuum with a pressure bandage. This causes suction inside to hold everything closed. In the hospital it is a biggish machine at the foot of the bed, but I went home with a portable vac device a little bigger than a cordless phone; it has batteries and you plug it in when you're just sitting/sleeping, but you can move around with it unplugged. A bit awkward and I pretty much stayed at home while I had that, but I got it out after I believe 4 days. Then there has just been more time waiting for it to heal from the inside out, but it is very nearly healed now and I will probably start chemo within 2 weeks. (They didn't want to put the port in either until I didn't have any open wounds, so I am likely getting that next week.)

    Bear in mind, most people don't have these issues, so don't worry about something that is very unlikely to happen to you! I am just sharing it because everyone here is so generous about sharing their experiences and I have found that so valuable.