My Little Bs Have the Big C

A Breast Cancer Blog For Young Women

Reality Bites…Or Cuts…Or…You Know What I Mean

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Ladies and gentlemen, curious people of all ages, here is the post where I tell you all about my DIEP Flap reconstruction surgery.  I WILL BE POSTING PICTURES.  IF THE POWERS THAT BE AT FACEBOOK DON’T LIKE IT, FACEBOOK CAN SUCK MY C&*%@!!!!!!!!!!!!  IF YOU DON’T LIKE IT, I PROMISE TO POST THEM AT THE VERY END SO YOU CAN READ BUT NOT LOOK AT THE PHOTOS.  I just think it’s important to share because one of my goals for this blog is advocacy and education.  My hope is that it will help you make your own choices about what surgery you should get, give you questions to ask your surgeon so that you can make the best decision for you or, if you have already had your reconstruction, to share what aspects were similar or different for you.  Sound good?  Then here we go.

Let’s start with the basics. (All my information here is coming from breastcancer.org)  What exactly is the DIEP Flap reconstruction surgery?  DIEP stands for the deep inferior epigastric perforator artery, which runs through the abdomen.  It is a muscle sparing flap surgery unlike the the TRAM Flap, which utilizes the muscle in the abdomen.  In the DIEP Flap surgery, fat, tissue and vessels are removed from the belly area and used to reconstruct the breast.  Through the use of microsurgery, the surgeon attaches the vessels from the belly area and transplants it into the breast.

Because fat, tissues and vessels are being removed from the belly area, the belly will be tighter and flatter post surgery, kind of like a tummy tuck.  That is a major plus.  However, an incision is made from one side of the abdomen to the other, from hip bone to hip bone,  leaving a scar.  The result of the breast is that eventually it can feel more like a normal breast, and that it will lose and gain weight with you as your body changes, unlike an implant which can feel less natural, look less natural and does not change with your body.

I chose this surgery after months and months of research and meeting with several doctors, all who agreed unanimously that it was the best choice for me.  The reason being that I amassed so much scar tissue from my mastectomy and radiation that it was likely making my axillary web syndrome (cording) and lymphedma worse as well as my range of motion.  Your own tissue is regenerative and the hope was/is that with this surgery, some of the problems caused by treatment would at least partially be resolved.

Reconstruction day began at 6:00 am on January 8.  I arrived at the hospital at 6:07 and was very swiftly registered and ushered into the private hospital area where I was prepped.  During this period, Ken was asked to remain in the waiting room.  I was given a gown to wear, given a pregnancy test (really people?  didn’t you put me in menopause?) and told to brush my teeth.  My vitals were taken and I was asked basic health questions.  This process took about 20-30 minutes.  After this, they allowed my husband to join me.  I first met the medical resident who asked me what surgery I was getting.  “Shouldn’t you know?” I asked nervously, as I slid to the edge of my seat so I could run the fuck out of there.  He told me that it’s important that know what I’m there for and they confirm it.  Well, it’s a good thing I did.  “I’m here for a DIEP Flap reconstruction and to get my mediport removed,” I said.   He looked perplexed. “You’re getting your mediport removed,” he asked?  “Yes, yes I am,” I said.  “You discussed this with your doctor?  You verbally agreed on this,” he asked?  “Yes, we did,” I said.  “And if you don’t take it out and make me go through another surgery, I promise to hunt all of you down,” I said sternly.

He said removing my mediport was not a problem and adjusted my surgical sheet (I forgot what they call it but it’s like a contract).  A few minutes later, he came back with the contract to sign and was very clear that I was getting the DIEP Flap plus mediport removal.  I signed that copy.

Next, I met the anesthesiologist, who is not the warmest person in the world.  But it seems like she means business, so I figured that’s all I really needed.  It’s not like we were going to be having deep conversation during the procedure or anything.  She asked me all the same questions as everyone else, checked me out and explained her job and asked if I had any questions for her.  “Can you give me something now?  For the anxiety,” I asked?  You’ll get the good stuff soon enough.  “You have my full permission to put me under THE MOMENT I get into the OR.  I have no interest in being conscious right now, ok?”  She seemed perplexed but agreed and left.

Then my plastic surgeon, Dr. Saadeh came in with another doctor that I have never met.  He reminded me that there would be many teams working on me at once, some on my abdomen area while others were working on the breast.  This ensured that I would be under anesthesia for as short a time as possible.  He asked me all the same questions (everyone asks you the same questions over and over).  He then asked me to open my robe and began to mark up my body with a green sharpie.  I wish I got a picture of this because….holy shit…that was frightening.  I have to say, they were careful and thorough and took their time to make sure they were marking me to perfection.  I think you want that quality in a plastic surgeon.  A perfectionist.  So that was fine with me.

But you should of seen Ken’s face.  His mouth was covered, his eyes were wide and his pupils were the smallest I’ve ever seen.  “Ken!!!!  Get it together!!!!  You’re freaking me out!!!!”  “I’m sorry,” he said, as he resumed the exact same facial expression.  “Seriously, if you can’t wipe that look off your face, turn the fuck around!!!!!”  I wasn’t feeling particularly sensitive at the moment.  Dr. Saadeh looked at my husband and said, “Hey, man, maybe you should turn around for now.”  And snickered.

After that, I think a few more people came in and asked me the same questions.  Then someone came with a wheelchair to take me away.  That’s when it hit me.  I began to cry.  This was really happening.  This surgery I didn’t want but knew I needed to have was going to happen.  After months, and months, and months of asking, learning and educating myself, it seemed so far away and now,  the moment was here.  Ken and I hugged for a long time.  I promised that I’d be ok.  He teared up and they whisked me away.

I went into the elevator two floors up to the OR.  I was left outside the OR for a few minutes alone while the completed prepping.  This was strange to me.  I could hear all of the doctors talking to their residents about what their jobs would be in each of the other rooms.  I was still crying at this point and I think the nurses inside my OR noticed because when they brought me in, the anesthesiologist’s assistant came right up to me and gave the warmest hug.  “I am so happy to see you,” she said!  She introduced herself and said, “I know you’re nervous but we are here to take very good care of you.”  And suddenly, I was calming down.  She asked about my life.  She asked about my son and let me talk and talk.  Suddenly, I wasn’t crying anymore.

But I’ll tell you what else wasn’t happening.  They weren’t finding a vein.  Fun Carrie fact: when I get scared and nervous, my veins retreat deep inside my body where they can not be found.  We tried every trick in the book and they would not come out.  Finally, she found a baby vein in my wrist (cue squirming in absolute horror and grossness) but it’s what we had to do.  She promised that the moment she got that needle in, she’d begin giving me “my champagne.”  She inserted the needle, put some gas(?), oxygen(?) over my mouth.  I felt my eyes get heavy.  That’s the last thing I remember.

My surgeon predicted that my surgery would last somewhere between 4 and 6 hours.  My surgery ended up being on the longer side because there was so much scar tissue from my mastectomy and radiation.  He also said that my cording was visible.  He tried to snap them with his hands and nothing happened.  He believes that no matter how hard any physical therapist tried, they never would have gotten to them.  He ended up cutting them himself.  With the removal of all the extra scar tissue, the surgery took an hour longer than expected.

When I woke up, I spent about 5 hours in recovery.  They were checking the vessels that were implanted in breast about every 15 minutes.  The nurses who took care of me were amazing.  They were attentive, sweet and caring.  And as I looked around, I noticed that everyone was getting the same care.  I mostly slept but my mouth and throat were so dry from the breathing tube during surgery that rest was uncomfortable.

After about five hours, my recovery nurses bid me adieu and sent me to my room.  I spent most of the day sleeping but was woken every hour for the next 48 hours to check on the implanted vessels in my reconstructed breast.  On the first day, I wasn’t allowed to have anything.  Not even liquids.  That was one of the hardest things for me because my mouth was so unbearably dry.  The pain was manageable, mostly because I was still under the magic of the anesthesia.

The next day….WHOA!!!!!!   PAIN!!!!  That was one of the hardest days of my life.  My nurses were great about keeping me on schedule with my pain medication, at my request.  But, if they came to check on me and my pain level was at a 3-4, with 5 minutes it would escalate to a 5-7.  Then it would take 30 minutes for the pain medication to kick in.  That was very difficult.  They also wanted me to sit in a chair.  The idea sounded terrible but once I sat up (not fun at all), being in a chair was actually a physical relief.  I could breathe easier and my muscles felt looser.  They also removed the catheter that day so I had to walk to the bathroom.  The first time I did that, the pain was so bad, my whole body was trembling and I was unable to urinate.   I tried again later after my next dose of valium and that seemed to do the trick.  AH!  Sweet relief!

The following day was much more manageable.  I was able to take a lap around the hospital floor and sit in the chair several times.  I was also allowed to move on to solid food.  Thank goodness for this because it was my birthday and I had birthday cupcakes to eat.  I didn’t have much of a taste for them but I had a little.  I’ll have to make up for  it another time and have a proper cake.

Since I did so well day one and day two post surgery, Dr. Saadeh said he was giving me the boot and sent me home on day three, which was my goal.

Since being home, I have mostly slept.  My body has been through a major trauma and my body is not giving me any choice but to let it heal.  I’ve also been keeping up with my pain meds, mostly the oxyocdon and valium (my best friend), which also knock me out about 20 minutes after taking them.

I take several laps around the apartment each day to keep the blood moving and eat meals at my table when I can.  My appetite is coming back slowly but seems to be back to normal when it comes to ice cream.

My husband has been amazing.  He’s basically my man-slave.  He changes my drains, helps me dress, tucks me into bed, fixes my pillows, fluffs my pillows, helps me out of bed,  cleans the dishes, makes me food, keeps my pill schedule and much, much more.  Please send Ken a shoutout in the comment section below!!!!

Here’s what I’ve learned so far, one week out from surgery:

  1. This surgery is not easy.  Make sure it’s what you want and it’s what will make you happy or physically comfortable in the long run.
  2. Keep on schedule with your pain meds.  You don’t want to mess with that or try to be a hero.  They are there to help you and help you heal.  You’ll wean off them soon enough.  Take them.
  3. Take colace.  Lot’s of it.  By the time you are able to poop (oxy and anesthesia are constipating), it makes going much easier.  Believe me, you don’t need to struggle here.
  4. Set up a plan for when friends can bring you meals.  If you have them all at once, you won’t have room in your fridge.  It also helps your caregiver so all that he or she has to do is heat up a meal rather than cook it.
  5. There is no right answer when it comes to reconstruction surgery.  I think all of the options suck.  You just have to make the best choice with the information you have at the time and hope it works out for the best.  We can only do our best in the here and now.
  6. Don’t do too much post surgery.  Get up and move to avoid blood clots and to get the blood flowing but you don’t need to do much or go far.  A little bit goes a long way.
  7. Eat what you can and what appeals to you.  Of course eating healthy is best but if all that sounds good to you is Ben and Jerry’s, then that is what you should have.  Now is not the time to worry about calories.  Just get some energy into you and worry about the rest later.
  8. Be vigilant about following your doctor’s directions for medication.  It can help prevent complications later.
  9. Love yourself.  Binge watch terrible television.  Sleep all day.  Get a foot massage from your partner.  Whatever makes you feel special.

What questions do you still have about reconstruction surgery?

What choices have you made about reconstruction and why?

What was your experience with reconstruction, if you’ve had it already?  Share in the comment section so that we can share experiences.

 

OK, NOW HERE COME THE PHOTOS

THEY ARE GRAPHIC AND SHOW INCISION SCARS, DRAINS AND BREASTS

IF YOU ARE WEAK OF STOMACH OR THIS TYPE OF THING TENDS TO OFFEND YOU, YOU SHOULD PROBABLY STOP HERE.

MORE WARNING

 

MORE WARNING

 

SERIOUSLY, LAST CHANCE!!!!!!!

 

 

 

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8 thoughts on “Reality Bites…Or Cuts…Or…You Know What I Mean

  1. Wow, you’ve just been through a lot. Thanks for sharing in such detail. Hugs to you and a BIG SHOUT-OUT TO KEN! Thank you for taking good care of Carrie and doing double duty in the home. Not all husbands are good at this stuff, so you are appreciated by all. And finally, Carrie – HAPPY BIRTHDAY!

  2. We all need a Ken at times like this … They are the unsung heroes who are there to care for us … My Ken is called Adam..you take it easy rest and heal … Helen xx

  3. Carrie, thank you for sharing all this helpful information, and for doing it so thoroughly too. If I ever face bc again, I am not sure what I’ll do in terms of surgery but it’s nice to have you as reference if I decide to take the mastectomy (with reconstruction) route. By the way, the surgeon did a nice job. And your husband is wonderful and very caring to you. I am glad he has stood by your all this time. Wishing each day becomes easier for you. And I hope you were able to enjoy your Birthday!

  4. Carrie, thanks for sharing your story (including the graphic photos). I’m considering a DIEP later this spring following chemo, and I hadn’t really thought about the extent of surgery until just now (still exploring options). Your Ken sounds a lot like my Ken – pretty darned wonderful and fantastic. Happy belated Birthday!

    • Nancy, I hope you are doing well on chemo and the side effects aren’t too rough. Choosing the DIEP was a difficult choice to make and my doctor didn’t suggest it lightly. But it ended up being the best choice for me due to the tissue damage I got after radiation. It’s a tough surgery, that’s for sure, but I think it was the best choice for me. Do a lot of research. Ask a lot of questions. There’s no rush to make a decision. Good luck!

  5. Thanks so much for sharing. I was wondering how the cording and lymphedema is now. I am waiting for my deip flap surgery they said May/June. I too have very bad cording and and lymphedema. Im hoping the surgery will help. Good luck in the future. Ps Ken great job. I keep telling my husband he will be responsible for the house and he agrees but I don’t think it has really sunk in.

    • Hi, I was doing well for a while but I’m having a lymphedema flare up again. I have been so busy with work that I can’t get to PT as often as I need to and that is causing problems. I still have cording. It’s very, very stubborn. If you’re able to follow your surgery with consistent PT, I think that will be beneficial. My PT is confident that we will get my swelling back down and then permanently so. So, we shall see what we shall see. And yes, Ken is doing a great job. Thanks for reading!

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