Since my last post, a lot has happened… and I don’t even know where to start. So, please forgive me if this is long or scattered, but it is real. 100% real life, right here.
I entered August optimistically. I was scared and nervous for my upcoming preventive mastectomy and breast reconstruction, but ultimately optimistic for the outcome that was being laid out in front of me.
I kissed my kids and mom goodbye before leaving for surgery on August third. Jeff and I jumped into the car and headed to the city. I was pretty quiet on the ride there and just reflected on my journey up to that point. I was telling myself that being BRCA+ was not a death sentence, but rather a lifeline. A lifeline to becoming an educated, proactive, and brave decision-maker. I was thinking how lucky I was to know my risks and to be able to hopefully mitigate them. I was thinking about my sweet friend who had the same procedure done the day before me. I was thinking of my amazing children. I was thinking that this was all going to work out, that God was on my side and that I would come out of this a-ok. I was thinking that I have the best and most supportive community. I was thinking of all my cheerleaders and caretakers. I was thinking about how much I love my husband. I felt like the luckiest girl during that car ride.
Surgery was uneventful and my in-hospital recovery was seemingly ok. I was released about 24 hours after surgery. I wasn’t feeling great, but I was ready to come home.
Arriving home was sweet. I got lots of hugs and kisses from my kids and they paid lots of attention to me. They would bring me things and sit with me while I recovered on the Lazy Boy. I felt better than I thought I would, but still pretty sore and needed to take extra time moving around.
Over the next few days, I was overwhelmed and grateful for friends and family that made dinners, bought us groceries, checked in on me, brought me flowers, sat and visited with me, and to my kids benefit…took them on some awesome adventures and outings. Thanks to my AH community, you are the best and treated us like family. Thank YOU!! We will never forget how you treated us.
At the same time as this wonderful support and love poured in, I was having a hard time. Any kind of physical exertion was challenging, even walking around my house. Let alone, walking up or down my block (which was encouraged by my doctors). I was having a hard time getting up and greeting guests and there were times it was hard just to talk. And then the fevers. They just wouldn’t go away.
After a few days chatting with concerned friends, 2 doctor follow-ups, personal nurse calls (thanks Robyn), and personal nurse visits (thanks Carly), we were advised to head to the ER to get checked out. They were concerned about my persistent fevers, sluggish feelings, and inability to walk around. At the same time, I had areas of skin that were “changing” not enough to run to the ER, but enough to take note that something was going on (we’ll get back to that soon).
It took us nearly two hours to get to the ER downtown. By the time I got there, my temperature was over 103, my heart rate was so high I required an EKG, my CBC blood work came back with my white cell blood counts over 20 (the normal range is under 10), I was taken for a chest x-ray to rule out a blood clot and pneumonia, and I was seriously scared.
I have only been this scared two other times in my life. Once was when I found out my mom had breast cancer and the other was when my brother and I got into a car accident with a semi-truck coming home from college, which happened to be the day after my grandfather died.
This kind of scared was different though. I could hear through my muffled cries and the thin ER curtains that whatever was happening to me was serious. The look on my husband’s face was one that I don’t want to see again. He was holding it together for me, but I could see it in his eyes.
This was bad, really bad.
My plastic surgeon came right away and took one look at me and confirmed that this was a bad infection that hadn’t presented itself in a physical form until that very day. Remember that skin changing thing that happened? That was the source of the infection. A bacteria that was doing major damage to my living breast tissue and skin. I was heading right to the OR. The plan was to save my implants if possible, but I was advised that might not be the outcome. I was for sure going to be losing the areas of skin and tissue that the bacteria latched onto. Since it was basically eating my flesh and there was no saving it at that point.
To say the least, I was a mess. I couldn’t stop crying. How could this happen? Why? Why me? Why now? The what if’s of surgery don’t happen in real life! How could this have been prevented? Was there some bacteria left in the OR at the first surgery that lent itself to this outcome?
A million more thoughts raced through my mind. And the tears just kept coming. There was no stopping them. I was in full-on panic attack mode. My fears and anxieties all rose up and there was nothing I could do to stop them. After some “help” from the anesthesiologist, I was able to calm down so that they could take me to the OR. I don’t know what they gave me, but boy did it calm me down. Jeff gave me a quick kiss goodbye and I was off in a twilight state heading to an unknown future version of myself.
When I came to, after surgery, I was numb-both physically and mentally. My hands flew straight to my chest. I knew within a millisecond that my implants were gone. I was silent. I moved to stage 2 recovery and eventually got wheeled to my room.
Waiting in my room was Jeff and a surprise guest, my uncle Kurt from California! I was grateful for their comedic relief and distraction from reality. We chatted and laughed and then said goodnight. My uncle left. I eventually fell asleep and so did Jeff.
The next morning brought new challenges and more tears. However, looking back now I can say that at the time I was panicking, my doctor wasn’t. He knew what to do. He knew how to save my skin and surrounding tissues that weren’t impacted by the bacteria. He had only seen a case as bad as mine three other times. Those three other women taught him how to treat me. I am sorry for their experiences, but grateful that their hardships brought knowledge to my scenario. And created a trusting bond between doctor and patient.
I am fully aware that what happened to me will help another woman in the future as well. For that, I am grateful. Maybe my difficult recovery will raise a red flag and change how recovery is monitored. Maybe different questions will be asked to patients that bring up persistent fevers and sluggish feelings. Maybe my story will be able to help somebody you know that has to go through this someday.
We are all connected and we never know how our lives interconnect. I have to believe that there is goodness in the darkness. I have to believe that there is a positive impact here. And I have to believe that maybe, just maybe, my horrible experience will bring light and hope to somebody else’s recovery from this type of surgery.
There are no happy accidents~
**I am not a doctor and my decision to proceed with major surgery took years to decide. Please don’t take my story as recommendations for yourself. If you are a BRCA Carrier please reach out to your physician today to make a plan. I share my story to help you think about your choices and ask questions about your options.
If you think you could be a BRCA Carrier, talk with your doctor. For more information, check out the non-profit organization- Bright Pink.**
You can also check out my other writings on Full Time Mom.