I'm Having a Double Mastectomy // BRCA Journey Part 2
I don't know if "rollercoaster" is a sufficient word to describe what the last few months have been like since I first found out about and shared my BRCA2 Positive diagnosis. I get asked how I'm doing, and truthfully I am fine. I really am. But sometimes I'm also scared and anxious. Sometimes I'm angry that I have to deal with this in the first place. But mostly I have peace about it. Most of the time I'm hopeful.
Long before I ever got tested, I had already made up my mind that if I were to ever find out I had the gene mutation, I would have a double mastectomy. "Cut 'em off! Take them out!" I know it's a huge decision, and I don't take it lightly at all. But coming to that decision beforehand has taken some of the weight off. On the other hand, being forced to be in a place where you have to actually make that decision really freaking sucks.
Once the news had settled into my mind, I began researching doctors and hospitals. When I shared that first post a few months ago, the outpouring of encouragement was amazing. I also received an outpouring of very helpful advice and recommendations. Friends were connecting me to other women who had gone through the same thing. I was connected to women who work in breast surgery at our local hospital - yes, multiple friends who I didn't realize did that for a living! Between those conversations, conversations with my OBGYN, and lots of googling, I was able to land on two doctors I knew I wanted to meet with.
The anxiety I've experienced leading up to each doctor's appointment has been hard. For the first month or so I was dreaming of surgery almost every night - nightmares where I was under anesthesia but was still aware of everything happening. I had tons of browser windows open on my laptop and phone, notes written everywhere of questions to ask and things to remember. Each doctor's appointment made the whole surgery decision a little more real. I first met with a breast specialist, and I absolutely loved her. She explained every option I have and didn't make me feel scared or pressured. But she also made me feel confident that surgery was the right decision.
A month later I met with the plastic surgeon. I was a total mess before this appointment. I felt like this appointment was going to be the final straw in "yes, I'm doing this." I could barely eat that morning and was so shaky. But I made Jonathan take my picture as I sat waiting in the exam room, so that I could remember that even though I was so scared, I was also brave and at peace.
I felt so comfortable with the doctor. He thoroughly explained my reconstruction options and answered all of my millions of questions. I'll just go ahead and say, however, that standing in front of a full length mirror with my "I've had three children and just finished breastfeeding for a year" boobs while a doctor measured and sharpied on my body was not a highlight of my life. But I did at least know what I was getting into and fully understood my options. I left that appointment with a lot of peace, because I knew the ball was officially rolling. We talked dates and everything. I needed a date set so that I could stop being in the in-between, unknown, and waiting portion of this ordeal. I couldn't deal with any more "maybes". The difference between how I felt going in to that appointment and coming out of it is huge. Jesus. That's all I can say. I even sent out an instastory to you fabulous women asking for prayer, and y'all showed up. BIG TIME. I cannot thank you enough for that.
After that appointment came all the steps and conversations I needed to have in order to get to the actual surgery, which I still didn't have a solid date for, but I at least had a rough time frame. The following week I was scheduled to go in for a CT Scan at the hospital where I'll be having surgery. The type of reconstruction I'm having is called DIEP Flap. Basically they are going to take a "flap" of tissue from my abdomen and relocate it to my chest to build my new boobs out of it (you can click here for a thorough explanation). Science is CRAY, y'all. So this CT scan was looking at the blood flow to the tissue in my abdomen to make sure it was good, and to see where the blood vessels and arteries are. I've never had a CT scan done before, so I for sure felt like I was walking into a Grey's Anatomy episode when I saw this crazy contraption.
And once again I wanted to document myself being partly freaked out, but doing it anyway! "Going scared." And I had to show off this sexy hospital gown for y'all too, of course.
The lead up to the scan took forever it felt like, but the scan itself was easy and super quick! And that's the last official appointment I've had up until this point. I've been able to ask questions to my nurses as needed. I've gotten connected with more women who have had this same surgery for the same reasons. I even got to have a conversation with a woman who had the exact procedure I'm having with the same plastic surgeon at the same hospital, so that was incredible. She answered every single question I could think of and was so encouraging to me. And that right there is the exact reason I want to share every part of this process with you. I don't wish this ordeal on anyone, but if you are walking through it I want you to see what it's like. I want to answer your questions and be your support and encouragement. You are not alone even though it might feel like it sometimes.
A few weeks after my scan, and with one simple phone call, I had a surgery date set. July 25th. July 25th at 7 in the morning I will be going into surgery. At this surgery they will perform the double mastectomy - removing all of my current breast tissue. They will also begin my reconstruction - the DIEP flap procedure I mentioned above. I'm saying "begin my reconstruction" because the tissue (aka fat) on my stomach is not enough to fully reconstruct my boobs on its own (the only time in life I've been told I don't have enough stomach fat!). So a few months after this surgery, I will have a second surgery. During that, they'll do scar revisions, adjust anything that needs to be adjusted, and add some volume with fat grafting.
As I've told my friends and people who have asked for updates, once again everyone wants to know how I'm doing. And I'm good! I hope that I'm not just in total denial, but I honestly feel so much better now that everything is finalized. I have pre-op appointments with both surgeons during the beginning of July. I'm sure I'll have some anxiety and fears around that time and the days leading up to surgery. I'm nervous about what parenting post-surgery looks like. Thank God for amazing family and friends. I have other fears surrounding surgery itself, of course. I've never had any type of operation, and this surgery is a big one that will last in the ballpark of 5 hours. I'm choosing to trust in my decisions and trust in Jesus who has gotten me to this place. He is good, and His plans are good. I am standing on that truth and fully believe that's why I am experiencing peace in the midst of this crazy storm.
There are more things I'll have to address due to this gene mutation, and I'm working through those things as well. Skin checks, eye checks, ovary scans, blood work. I'm trying not to let it feel overwhelming even though it easily could be. One step at a time, right? That's how we get through hard things. If you ever have any questions, I am more than happy to answer them. You can comment on this post or email me at coldcoffeehotmess@gmail.com. Thank you for walking alongside me through this scary time. It means more to me than I could ever fully express!
This is my sister Haley and I at this year's "Race for the Cure". She wrote my name on her back as one of the people she was running for. Talk about a humbling moment. But also a moment that lit a fire under me. I am going to continue to support and pray for a cure so that not one more person has to face the potential of this terrible disease.