As I sit here on my couch recovering after a prophylactic (preventative) double mastectomy just a little over one week ago, I decided I want to share my story with the world. There’s a lot of shame and embarrassment surrounding a mastectomy, but SO many women have to go through it and I want to normalize it. I want to share my story for any of you who may have to go through this one day.
Where it all began: Two years ago (just after Jordyn was born) I found out that I carry the gene for BRCA1. I found this out from bloodwork. The reason I knew to get this testing done was because my grandmother had both breast and ovarian cancer. For those of you who have no idea what I’m talking about (asking what the heck is BRCA1) – it’s a genetic mutation that puts you at a much greater risk of having both breast and ovarian cancer. Since my grandma had both, my doctor highly recommended that I get bloodwork done. To my disappointment, I found out that I was unfortunately positive for the gene.
At the time I found out this information Jordyn, my youngest, was only two months old and I was breastfeeding her around the clock. I wanted more than anything to be able to continue breastfeeding her. I met with an oncologist and discussed my situation. She told me to continue to breastfeed and that when I’m finished that she highly recommended a preventative double mastectomy. I was so relieved that I could continue to breastfeed and knew that when that was over I’d have the double mastectomy. I was so consumed with having a newborn and toddler that at the time, I couldn’t think much about the mastectomy. This was a blessing because it really took my mind off of it.
I ended up breastfeeding Jordyn for 16 months, and as soon as I was done I scheduled consultations with doctors. I was lucky to find two amazing doctors very quickly (one doctor does the mastectomy and the other does the reconstruction / implants). At the time that I found the doctors Jordyn was around 18 months old. I knew this surgery was a big deal and that I wouldn’t be able to lift her for a few months. I decided I’d wait until she was 2 so she’d at least be able to crawl in and out of her carseat by herself and I felt at that age I wasn’t carrying her around the house so much anymore. And then COVID hit. My surgery was delayed.
Finally on September 30, 2020 I underwent my prophylactic double mastectomy. I was scared and had so many emotions the week leading up to the surgery. I hugged Josh goodbye in the waiting room and walked into the pre-op room in tears. My nurse was so warm and really helped me feel better. I wasn’t anxious, just sad. I felt like it didn’t really hit me what was happening until that moment. I also felt sad that no one was allowed in the hospital with me because of COVID. I was fearful of waking up alone after surgery and not having a familiar face. No one was allowed to stay in the hospital overnight with me either. I told myself that everything would be okay and to be brave. I knew that if not for myself, I had to do this for my children so I could be alive and healthy for them for a long time.
The next thing I remember was waking up in the recovery room and a nurse telling me that the surgery was over and went well. I was so relieved that I was alive (I had a fear of dying during surgery). I don’t remember much else from the recovery room. I just remember being in and out of sleep. I don’t know if I was in there for 5 minutes or 5 hours, lol.
I stayed in the hospital for one night. The nurses did a really great job keeping me as comfortable as possible. I was on painkillers and needed to take something for nausea. However, they did an excellent job managing the pain and I don’t remember ever being that uncomfortable. It was definitely weird not having my mom or Josh there, but I was so proud of myself for what I just did and felt like it was so brave.
The following morning I checked myself out of the hospital and stayed at my moms house (obviously did not drive myself haha). I stayed at my mom’s house for three nights just so I could fully rest / recover and not have to feel like I had to help with the kids at home, because really, I needed to 100% REST those first few days. My mom and step-dad took the best care of me and I’m so grateful for them. I did so much better than I thought I would the first few days. I was able to get in and out of bed by myself and even was able to go to the bathroom without any help.
A few days later my mom drove me home because I missed the girls and Josh so much and couldn’t be away from them any longer. I was so excited to be reunited with them and they both understood that they needed to be gentle with me. I’ve been doing better and better each day. I still have ‘dinosaur arms’ as Josh calls them, lol. I’m still unable to reach above my head or even straight out ahead of me. I know with time that will come back. I am being gentle and patient with myself and know that this is a long recovery.
Many of you are probably wondering what type of mastectomy I had and I’m an open book and happy to share. I was able to fully keep my nipples and all skin which I’m so grateful for. Some women aren’t able to keep their nipples. So on the outside it feels like fully ‘my own’. The plastic surgeon put implants under my muscle (which is more painful and a slower recovery), but yields better results in my case. My only scar is underneath my breasts, so you can’t even see it. Basically the doctor went in under my breast and removed my breast tissue, replacing it with an implant. There are no visible scars.
I’m now almost two weeks post-surgery and am completely off all pain medication. I’m a bit sore, but totally can manage the pain. I have drains that are coming out in two days and I can’t wait! I’m only allowed to sleep on my back while the drains are in, so I’m so excited to get them out and be able to sleep on my side again. The drains don’t really hurt, but are definitely uncomfortable and annoying.
I truly believe that knowledge is power and I’m so grateful that there is now a test to find out if you carry the BRCA gene. If breast or ovarian cancer is very prevalent in your family history you might want to consider getting tested. Always feel free to message if you’re going through a similar situation. Always happy to chat 🙂 xo