The Story of My Surgery
Updated: Feb 19, 2019
Sharing my post op thoughts on my 12 hour double mastectomy with diep flap reconstruction
God, I am walking to the edge of a cliff. Build me a bridge. I need to get to the other side. - Kate Bowler
The day of the surgery started early. I woke up ready, feeling a bit anxious but not fearful. I knew I was in good hands, I was as prepared physically and mentally as possible. I listened to my surgery playlist while waiting for the surgeon to come in and mark me up. My husband and I chatted, shared hugs and I love yous, took lots of deep breaths and of course I prayed. I felt calm, I knew I wasn't alone. Right before they put me under, a blanket of peace and assurance came over me. I felt surrounded and held up. I felt my Grandmother's love, I knew she was nearby. She didn't get to live, she didn't get the heads up about having the genetic mutation, Chek2 like I did.
She died, I get to live.
She was with me, I felt it. Ahh...gratitude for this heads up. I peacefully went to sleep.
Barely conscious, I am in ICU and my nurse tells me my surgery took longer than expected. Instead of 10 hours, it took 12. She explains that I came out of surgery, went to recovery but they lost the doppler signal in my left breast. In a Diep flap surgery, veins are transferred from the abdomen along with tissue to replace the breast tissue that is removed. If the veins fail then the transfer fails and the doppler wasn't picking up the sound of the vein pumping blood. They rushed me back into surgery, put me back under and cut open the fresh wound of my left breast to verify that all was well and the vein took. My first thought was, oh my gosh my poor husband he must have been so scared, this must have been so stressful for him. My second thought, oh my gosh, my body, my poor body. The stress and trauma of being pulled from surgery, partially coming out of anesthesia, then going back under and being cut back open. I just wanted to hold myself. I wanted to wrap my arms around myself, comforting myself and saying, "I know, I know. It's scary but you will be okay. I love you, You are safe now."
I was in the hospital for 5 1/2 days and that left breast gave the nurses trouble every damn day. They need to check these fragile veins every 30 minutes at first gradually increasing the time between checks over the 5 days. Everyone held their breath, including me, when they would check the left breast. What a trouble maker.
Accepting the unexpected
Each day in the hospital I gained just a bit more strength. I had no use of my abs and was not allowed to use my arms almost at all so I was pretty helpless but I could walk so I tried to walk a bit more each day. I took tiny baby steps, slightly hunched over. My stomach was not only sore but so tight, like I felt if I even was able to stand fully upright I might split right open. I pushed myself each day to try and stand a bit taller. For the first 48 hours after this type of surgery it is protocol to be catheterized, something about bladder spasms. I couldn't wait to get that thing out of me. Unfortunately my bladder stopped working on its own so every time they tried to take the catheter out I would have to have it replaced. The nurses would try to give me time to go on my own, letting me guzzle water and walk the hallway. I had NO feeling of needing to urinate, none. At one point my bladder was so swollen it was protruding through my skin. I know, super gross. That particular time when the nurse catheterized me she drained 2 freakin' liters from me. I am not kidding! I didn't even feel like I had to pee.
This went on for 5 days and it was finally decided that I would need to go home with a cath bag. My positivity took a major hit that day. I cried and cried. I cried after each nurse had to catheterize me, I cried to my husband, I cried to the nurses in the other stations that were cheering me on when I would walk the hallway. I just cried. We got our lesson on how to change the bag and all our supplies to take home, I felt out of my body when they spoke. I couldn't believe this. I did not prepare for this nor did I even know this was a possibility. I begged to keep trying but was told this was the final call. Then something divine happened. My breast surgeon happened to be stopping in to see another patient. This was a Saturday so they had to call her in. She asked at the nurses station about my progress then came in to see me. She told me she bought be two hours. I had two hours to pee. If I could go then I could leave without the cath bag, if not then we would go on as planned. She said, "walk girl, get out there and walk. She also said, look you went into this surgery so strong and I know that is why you feel so great right now but sometimes these things happen. It was nothing you could have prevented."
I needed to hear this and it became a constant theme in my recovery. Plan your heart out, prepare like a champ but life still happens. This is where patience, self love and acceptance come in.
So, I went out in the hall and took my mini baby steps with my husband walking right beside me (another recurring theme in my recovery). I walked and walked and cried when the nurses cheered me on then...then I peed :) I peed like a pregnant woman who just guzzled a gallon of ice tea. My nurse came in and cheered, my husband cheered and I cried, relieved to finally go home and without that damn bag. I continued to have trouble in this area for two weeks after going home. 4 1/2 months after my surgery I still whisper, "thank you" at least once a day when I pee. True story ;)
Recovery at Home-accepting more of the unexpected
While at home my husband would be my primary caretaker for 2 weeks. I couldn't even get in and out of bed without assistance. I also had at home nurse care. I got home late in the day on Sat. I pretty much slept after getting home. Thank God, sleep came easy during the whole recovery, even in the hospital. For my whole life sleep had not been a friend of mine but it seemed I finally reached my exhaustion point. My body embraced the rest it needed. Ahh, gratitude, thank you for sleep.
Warning, gross stuff ahead aka more S*&$# they don't tell you
The following morning I woke up and after eating breakfast thought it might be time to finally go to the bathroom, like ya know...uh, move my bowels. Hey, I did warn you! I hadn't "gone to the bathroom" in 6 days at this point. Yeah, I know. I don't know what the medical term for what happened to me that day is called but I call it "the day my bowels shut down". For FIVE hours I felt like I was in active labor. I feel like I should repeat that sentence. For FIVE HOURS I felt like I was in active labor. This is not an exaggeration. My husband and I were beside ourselves trying to bring me relief. My husband called the Dr and we waited by the phone. Me pacing the hallway in complete exhaustion. My son ran to the store twice to get various over the counter medicines. We googled, I sweated and shook. We called the Dr again, I paced and cried. We honestly felt I needed to go back to the hospital. The problem with that idea? How the flip was my husband supposed to get me down the steps and into the car??? If you saw the condition I was in you would understand our dilemma. This was hands down without a doubt in my mind the most physically hardest day of my entire life. You're damn right that needed to be in bold text.
Mentally this day was crazy hard as well. See, this was the first time I doubted my decision to have the surgery. In between screaming and crying in my bathroom, I said the words, "what did I do to myself, what did I do to my body". A thought like that can spread like a cancer and undo any positive outlook you are desperately clinging to.
Then something divine happened, again.
Everything passed, literally but also figuratively with my doubtful feelings. Although if I am honest I clung to a sliver of those doubtful feelings for longer than I should have during my recovery. But now for the divine, my husband and I walked out of that bathroom together hand in hand (yeah it was that kind of day folks). He washed my body of its sweat and changed my PJ's and put me to bed where the sweet relief of sleep overtook me for hours. When I woke up I knew something so surely and so strongly. We were different. Our marriage dramatically changed in those five hours. I have always struggled with leaning on anyone. I would always rather do it myself. No one can let you down if you are doing it yourself. I needed my husband so much that day and I had no place to hide. I couldn't hide behind body shame or an invisible wall protecting me from getting hurt. When the barrier is gone the only thing that can fill that space is connection. Closeness is found through vulnerability. And I have never been so vulnerable in my life. Remember where my head was before this surgery. This was more than just a physical healing.
My husband would be my sole everything during my recovery. His patience and kindness were overflowing. His love was unending it seemed and at times almost shamed me. Do I love like that? Am I even able to love like that? His capacity to care for me without complaint was the biggest healer for me. Love heals all things. Ahh-gratitude for love
Eventually you will come to realize that love heals everything, and love is all there is - Gary Zukav
This was yet again another example of accepting the unexpected.
The rest of my recovery although slow went well. I slept well, ate well and fed my brain with all things positive. If it didn't make me smile or feel good I wanted nothing to do with it. I really think all of this made such a positive impact on my healing. In fact, my home nurse when discharging me said, "I never had a patient that healed so quickly from this surgery". Woohoo, well let me just pat m'self on the back! Sigh... but then came the unexpected again because the day after she said those words the incision of my right breast opened up. Yep! How's that for life showing you who's boss? I then spent the next 2 1/2 months with a wound care nurse that came EVERY DAMN DAY to clean my wound and change the dressing. It was hard to stay positive during those 2 months. But I kept going. Because I had an open wound this pushed back the rehab part of my recovery which made things complicated for my left shoulder. For some reason, my left shoulder has been jacked up since the surgery and the now months of lack of movement only made it worse. Once discharged from wound care I cautiously started physical therapy to regain strength in my abdomen and arms and to regain the mobility of my arms. I also had lymphatic massage to help with all my abdominal swelling. Something that sounds more enjoyable than it really is. Ahh-gratitude- thank you for my healing.
If you are about to have a major surgery followed by what could be a complicated long recovery I recommend a few things.
Love for yourself - love yourself enough to take care of the only body you will ever get
Radical Gratitude - be grateful for every small step of progress you make and send out gratitude for every single act of love that is sent your way while healing
Grace - give yourself grace and time, be kind to your body, accept the Grace that is all around you
Acceptance - s*&% is going to happen, life will interrupt your plans, accept it and move on
Thanks for listening,
PS If you have any specific questions about Diep &/or mastectomy feel free to send me a message! I learned from asking other women and I am happy to give it back :)