BRCA Journey Part 2: I felt this was the beginning of my body revolting, that my immune system was off and out of whack
You can read part One of my BRCA Journey here and see why I chose this path in the first place, again not my best writing but just the facts and why this journey was so long for me. Keep in mind everyone’s journey is different. I personally now think my journey would have been different if I would have been on the Autoimmune Protocol before I began this journey… I will publish part three soon.
On September 16, 2013 I went in for surgery and six hours later I had mastectomy expanders and drains positioned in me by the plastic surgeon. The surgery went well without any complications. I was surprised that with all of my autoimmune issues I seemed to have no reactions to the medications or procedures, and after two days I went home to rest and recover.
Recovery went smoothly and both doctors said I was healing well. I was off my painkillers after a few days and just taking over the counter medication as needed. My drains were removed two weeks after the surgery and the doctor was going to wait one to two weeks to give me the first fill of saline into my expanders, so having a flat chest felt strange for me. I had always had a large bust and now to look down and not see my breasts was really hard mentally. I was looking forward to starting the fill process to get the expanders to the proper size for the next round of procedures.
Well, I never got to have that fill. I seemed to be doing fine- no fever or redness. I had started to feel kind of depressed, but just thought I was in a funk with everything going on. When I woke up on October 23rd, I found a large deep wound along my incision line and one smaller open wound on my left “breast.” They’d literally appeared overnight! My mom immediately took me to the plastic surgeon and he scheduled me for surgery the next morning. The area was cleaned out, a new drain and expander was placed, and the necrotic skin was removed. I went home on heavy antibiotics.
This infection was a blow to me physically and to my self-esteem. I was determined not to let this setback get me to down and I tried to stay positive. I was ok, “this was just a fluke” I told others, but I had a gut feeling that I didn’t verbalize. I felt this was the beginning of my body revolting, that my immune system was off and out of whack. I began self-soothing with LOTS of paleo treats, because in my mind I needed them to help with all the medicine I was taking. Really, I was trying to fill the void of fear and not being in control with food.
Ten days later on November 4th, I was back in the operating room. Another deep hole in the left breast developed overnight even while on strong antibiotics. I was so sad. I was sick of “sleeping” upright in a recliner, having nasty drains, taking medication, not being able to hold my babies and having to rely on other people to take care of me. When I came home I just cried and listened to the song “Oceans” by Hillsong United on repeat for days. My mom had planned to stay with us for 5 weeks, but now there was still no way I could take care of my kids, myself or the house. Thankfully she was able to stay but it was hard, and I felt bad keeping her longer than expected and felt bad being so needy.
My plastic surgeon was so kind and patient. I saw him every week and we basically came to the agreement that my body was not happy with the expanders and foreign objects in it, which meant no implants for me. I think I knew in my heart this would be the case before I started. I knew that my immune system was reactionary and didn’t like anything fake. At that moment I was actually grateful that I hadn’t lost all the weight I wanted to before this. That belly fat was enough to rebuild my chest.
My DIEP flap reconstruction was scheduled for Nov 18th 2013. It was a good thing because that morning I woke up with a pea size hole in the left breast incision. I was now 32 years old and going into a 14 hour surgery. It was hard knowing I would have to stay in the ICU for 5 days, not see my girls, and be a burden on my family and friends once more. It was going to be a whole different thing being cut from hip to hip and having breast reconstruction in the same day. I put all of my trust in God that He knew what He was doing.
My plastic surgeon worked his magic and took extra time to make sure that my DIEP went well and was successful. The day after my surgery I woke up feeling much better. I knew my body was happier having those expanders out. The week of recovery in the hospital was hard though. I felt like I had been through battle with drains coming out of my skin from each underarm and one from either side of my groin. I had to walk looking at the floor and not stand up right because my stomach was pulled so tight. I had Doppler monitors attached to my breast flaps to monitor the blood flow and make sure the new tissue was healthy and receiving blood.
I went home right before Thanksgiving and I was so thankful to be back with my family and in my house. I felt so blessed by all the friends and family who were watching over me and my family. I continued walking hunched over for a good six weeks. My husband had to shower me and wash my hair. He was so amazing working, taking care of me, and pouring extra love out over our babies. My mom stayed to help until January 1st and then went back home. My sister came to help us frequently and so many friends and neighbors brought meals. It was amazing and humbling to see people’s generosity.
I started feeling good and getting back to a little bit of normal, I was still sleeping in a recliner and napping every day but doing more things on my own and that felt good. I started to notice a bump a few inches under my right collarbone, and then very quickly it grew and became hot and red. I sent my plastic surgeon a picture right away and then was back in the operating room on January 20th for breast surgery #5. My mom again dropped everything to come back down and help with the kids. My plastic surgeon was not sure exactly what it was but carefully opened up the incision on the right breast and spent 4 hours removing a 5 inch long piece of infected necrotic tissue. Again- another drain and more antibiotics. None of the doctors could understand why my body kept having these crazy reactions to everything.
After that was out I was again feeling ok and just couldn’t wait to be done with surgeries. I still had one more planned breast surgery, to make the breast flaps even, revise the abdominal scar, and create surgical nipples. So two months later on April 3rd I was so happy to be having my last surgery, but I had this sinking feeling that I would end up back in the operating room. I was praying hard for this to be the last time as planned, and the surgery went well and the drains only lasted a few days. I was done with the surgical reconstruction! And you would think everything was great, I should have been so ready to get back into shape and all………..