Rolling in the DIEP

 I know, I know, starting with a pun.  But I am doing nothing but keeping myself entertained these days! (Warning: the very last two pics of the post show parts of the incisions. They are buried under a lot of totally PG photos (and after the thank you paragraph) for those that don’t want to see. 🙂

To recap, I was diagnosed with breast cancer in the left breast on July 1, 2019.  I finished chemotherapy in December of 2019, had a single mastectomy in January of 2020, where they placed a tissue expander pending completion of treatment. In August of 2020, I finished my immunotherapy infusions (every 3 weeks for a year), and I had my "exchange surgery" where they removed the tissue expander and placed an implant.  Contrary to the implants that are used to augment natural breasts, mine comprised the entire breast and was placed over the muscle.

Not exaggerating, I hated it immediately.  And I really don't use the term "hate" often, but I truly despised it. For one, I always felt like I had a baseball pressing on my chest wall.  Imagine this feeling under a surgical bra!  I haven't been able to lay on my stomach comfortably since mid-2020 - for sleeping, massages, yoga,  physical therapy, etc.  

For two, while the outside was numb, the inside felt perpetually inflamed.  

For three, it looked completely unnatural. At the time of the exchange surgery, they did fat grafting from my abdomen to cushion the implant and round out the breast like a real one.  My body absorbed that fat, leaving indentations and ripples.

I had considered doing a DIEP flap at the time of my original reconstruction, but after chemo, my body felt bruised and battered.  Chewed up and spit out. I knew the recovery was even tougher than implant reconstruction, and on top of that I "wasn't a good candidate" because I had lost so much weight during chemo and the DIEP depends on abdominal tissue.

But 2.5 years later, I felt stronger.  Strong. I knew mentally and physically, I was more ready.  When I visited my plastic surgeon last year, we talked through all of my options: stay deformed and uncomfortable and inflamed; do another fat grafting to at least fix the deformed part of it; or do the DIEP flap.  My surgeon again thought I wasn't a good candidate, but he suggested I meet with his colleague, Dr. R., who specialized in DIEP flaps.  To my pleasant surprise, Dr. R had no hesitations.  He warned that I might be smaller and I said that's what I wanted in the first place!  Hallelujah, let's do it.  That was in August, and I wanted time to get through the year, work, holidays, etc., so we planned for January 2023. 

As you recall, I had quite a set back when we did the CT scan to prepare for this surgery, and we found the abdominal mass that started an avalanche of health issues, leading to hospitalization for pneumonia (see the last post!), and for a solid two months, I thought I would cancel the surgery.  My mental and physical stamina took a HUGE hit from that ordeal, plus I was in physical therapy for four hours a week for my hip. But as the holidays hit, I had some downtime with vacation, and I knew that I owed it to myself to proceed.  How I was feeling in my body was no way to continue through life, when I had other options.

So what is it?  

DIEP ("deep inferior epigastric perforator artery") flap surgery is "where the fat, skin, and blood vessels are cut from the wall of the lower belly and moved up to your chest to rebuild your breast... Your surgeon carefully reattaches the blood vessels of the flap to blood vessels in your chest using microsurgery." (https://www.breastcancer.org/treatment/surgery/breast-reconstruction/types/autologous-flap/diep).  

They also repaired my diastasis recti, or abdominal muscle separation, from my pregnancies.  

DIEP flap is a major surgery.  An ICU stay is automatic after a DIEP flap, which I didn't realize until I woke up there, after a 7 hour surgery.  The first thing I remember when waking up is hearing the nurses saying "I don't like the looks of THAT."  I was tachycardic.  My heart rate was all over the place, and Jay, sitting patiently next to me, had to watch the machines jumping all over the place while my heart and new blood vessel connections did their job.  I also had high blood pressure, high pulse, elevated temp, and low oxygen.  THANKFULLY, the tachycardia was largely due to dehydration. I didn't eat or drink anything in almost 36 hours due to surgery and potential for follow up surgery.  Two high-flow bags of fluid stabilized my heart, and over the next two days (and two IV antibiotics), the rest followed.  I required oxygen for most of my ICU stay, including because the pain meds were heavily and negatively affecting my blood pressure and oxygen levels  

I also hadn't expected the staples.  I had (7!) staples all through my chest to hold the EKG doppler wires in the place where the blood vessels were connected.  Removal of those was....as you would expect it would be to remove staples from your chest. 😩 (Close up photos are at the very end, for those that don't care to see!)

The surgery left me (and all DIEP flap patients) with a hip to hip incision, a moved belly button, a full under-breast incision (they used the same incision from the last two surgeries, plus a little extra to do the blood vessel work), and my top and bottom abdominal muscles were stitched up.  My chest was KILLING me!  During the procedure, they remove some rib cartilage to get access to the blood vessels, and because the blood vessels in the chest are so small, they have to really dig in there to access them.  (One hip incision is the very last photo, for those that don't care to see!).

On day two, they had me up and walking to the bathroom, and to sit in a chair, and I had to use the spirometer every 10 minutes to get my lungs working.  I had leg compression going, and I was on daily Lovenox (blood thinner) shots.  OUCH!! For medication, they cycled through Fentanyl, Oxycodone, Tylenol, Toradol, and Dilaudid.  All of the big guns.  Because things were going well, they released me after four days and I came home with a mix of antibiotics, self-administering Lovenox shots, anti inflammatories, painkillers, stool softeners, the whole works.  I literally had a giant basket of meds next to me.  I also had three drains to collect and measure post-surgical fluid.  And I came home with two nerve blocks in my abdomen...that we removed at home.  They told me the catheter is generally superficial, only a couple centimeters below the skin.  Imagine the trauma of removing the catheters (with the pain management provider on the line), and it was nearly 5" LONG!!!!!!  I was pulling and pulling and asked her again HOW LONG IS THIS SUPPOSED TO BE?!  She said my nerves must have been buried deep in my ab muscles.  OMG.  And then we had to do it again on the other side.

What is recovery like?

I came home with several restrictions. I can't push or pull or lift more than 5 pounds - which meant I couldn't use my hands to help me get up or in or out of bed, with internal stitches up my entire abdominal wall.  I can't reach over head or behind my back. I can’t bend over, and I can’t stand straight up. My lower back is SCREAMING from walking hunched over. 

I was also deemed a "fall risk" so I couldn't so much as walk to the bathroom without an escort.  Now that I’m off most of the meds, I can even use the stairs by myself. 

My entire family has been such a support.  My sisters came to see me in the hospital and help the kids at home while Jay tended to me and my mom worked and managed the kids.  The day I came home from the hospital, James spiked a fever.  And the day after I got home, my mom got Covid.  So on top of my round the clock care, Jay and Vivian were taking care of all of us!  My in-laws helped save the day.  

In the midst of all of this, the output in my breast drain changed significantly, enough that I contacted the surgeon.  They said it should be fine as long as there was no swelling.  I said "ummmm there is a ton of swelling." I had to go for an emergency appointment with my original surgeon, who took one look at me and said he thought I had a hematoma and would need to go back into the operating room.  He communicated with Dr. R, and they sent us to the ER expecting to go back into surgery.  Instead, Dr. R thought it was better than he thought, and I ended up being monitored overnight in the hospital, and THANKS TO GOD I did not have to go back into the operating room.  But Dr. R's team has been on speed dial since then, as I communicate every single thing that changes or feels different.  The issue is: a hematoma would put too much pressure on the flap and cause the blood vessels to fail.  

It is a given that the adults would be indispensable, but can I talk about Dr. Vivian for a moment?  She walked me to the bathroom.  She helped me strip my drains, collect and measure the fluid, and she DUMPED THE FLUID AND RINSED OUT THE CUP.  She helped me get dressed.  She helped me change my dressings.  One day, I was reclined and felt a cough coming on, and when you're stitched throughout your entire midsection, a cough was literally panic inducing.  I couldn't get to the recliner remote to get myself sitting up so I could brace myself, and I was shouting to her to help grab the remote and sit me up, and then to run for Jay and sparkling water (in case something was stuck in my throat).  She not only did all of that, but SHE STAYED CALM!  (I, however, did not.  That might have been my biggest cry of this whole thing.  That was positively unbearable.) 

The six year old was a rock star!  She made me thoughtful snacks, she put on movies and sat next to me to keep me company, she refilled my water cup 8 times a day.

I'm so beyond proud of her, but not just because she was everything I needed:  but also because she communicated when her cup needed refilled.  She told me when she needed a hug and we worked out how to do it.  She told me when she was feeling sad and didn't know why, and she asked if we could do something together like color.  We spent the weekend coloring by number, doing kid sewing projects, making recipes (I directed her and James and they did the work).

For now, we are holding the line.  If the flap fails, they would remove all of the tissue and put in an expander again, and then an implant.  I firmly believe I'd reject that, and stay half flat.  The implant was so bad for me, and now that I have felt what it feels like with my own tissue in its place, I truly don't think I could go back. 

It now feels soft, and it is warm.  The implant breast was not - due to no blood flow and the material.  I no longer feel like I have a balloon in my surgical bra.  It feels....like the natural side.  It is a miracle, honestly.  And while I wait patiently through this VERY long recovery, I am preemptively making peace with being flat if this doesn't work out.

Total recovery is around 8 weeks.  Tomorrow makes two weeks for me. I still have one drain in, and I am still requiring a lot of help to do simple tasks, but I am able to do all of my own wound care and get myself drinks or snacks.  I will likely be able to drive again in another week or two, and in another 2-4 weeks I should be cleared for moderate activity, including physical therapy.  For the time being, I am filling my time with crafting, quality time with my family, and later this week, working from home.

A HUGE thank you to everyone that checked on me, sent food, flowers, prayers and well-wishes.  We feel them, and we appreciate you.  Also, I am an open book.  If you have questions about the DIEP flap or want to see pictures, I'm happy to share.