Yesterday, I woke up to all these texts about the Angelina Jolie story — everyone was contacting me because I went through the same thing just under eight weeks ago.
Like her, I'm a mother and a wife, who doesn't have cancer but does have the dangerous BRCA gene. I think it's so important to open up about this, and I was happy she wrote that article.
In 2011, my sister and I both got tested for the "faulty" gene. I'm 34 and she's going to be 30. We got tested because my father was positive, and it was connected to a bunch of pancreatic and ovarian cancers, and subsequent deaths, on his side of the family. My mom doesn't have the gene, but there's breast cancer on her side, too.
Turns out, we both had the BRCA2 mutation (Jolie has BRCA1 — but it's almost exactly the same). That phone call didn't feel real. It was overwhelming. I didn't let myself get emotional — I still don't know if I've released my deepest emotions about it — because I'm the type of person who goes right into action-mode.
At that point, my daughter was almost 2 years old and I had my hands full, so I thought I would just go the intense surveillance route: mammograms, MRIs, sonograms. But that was extremely stressful. If you have dense breasts, which I do, the doctors are constantly calling you back for more pictures because they need to look closer at an area, or there is an area that doesn't look quite right. Every time I'd get a biopsy, waiting for the results would feel like forever. You think, "It's not going to be me ... but what if it is me?"
One year after finding out I had the gene, I got pregnant with my second child, my son. When you're pregnant, your hormones are on fire, so there's an even greater concern for breast cancer. I kept feeling them, and finding things that scared me. But I was conflicted. When I was younger, I had a breast reduction to help alleviate the strain on my back. Now, to go through another surgery and get my breasts entirely removed seemed so drastic.
The anxiety of cancer just kept haunting me. During my pregnancy, I kept thinking, I have to get rid of my breasts. Why sit around and wait for cancer to happen? The thought of not being with my children, not watching them grow up ... I had to do anything I could to prevent that. If I didn't have children, I don't think I would have done it.
Miraculously, despite the long waiting list, I got myself into Sloan Kettering. Just like Angelina's, my doctor explained that I should have a mastectomy immediately, and ovarian surgery later, because the risk of ovarian cancer before age 40 is very, very minimal. Breast cancer you can get at 35, 45, 55 ... the way he explained ovarian cancer: "If you get it, you're going to die of it." That made me realize how very real these risks are and made me feel like I had to do whatever was possible to lower them.
I delivered my son at the end of August. Seven months later, it was time for my surgery. The week before was the hardest part. I was terrified. Even though I was doing it for my children, I knew I was still putting my life at slight risk just by getting such a major operation. Plus, how do you process the fact that you're getting your breasts cut off?
Before the surgery, you go and pick out the implant. Some people choose the natural look, which has a slope, and looks a little saggy. I thought to myself, if I'm having this whole surgery, the upside is I'm going to have perky boobs! I wanted to stay the same cup size as before or go slightly smaller.
Unlike Angelina Jolie, I chose not to save the nipples. Saving the nipples makes the cancer something like 2 percent more likely, so I figured, if I'm doing this much, just get rid of them. Eventually, I will get nipple tattoos, which is a common thing to do. Who cares if I look like a nipple-less Barbie doll for a while!
The day of the surgery, I had my amazing family and husband with me. The nurse had me walk into the OR and see everything. That part was horrible. It looked like a scene from Grey's Anatomy — cold, scary equipment and bright lights. I was shaking; I feel like I went into shock. Seeing that environment was such a bad experience.
I laid down and they put an IV in me. I started to cry. The nurses soothed me a bit and then put something on my face that smelled really funky. I said, "I don't think this is oxygen." About five hours later, I woke up.
Everything came back clear (there was always a chance they could have found cancer inside me) and my implants were in nicely. The recovery was way, way worse than I imagined. I went home after one night, and threw up nonstop. I was so severely sick. My parents and husband took care of the kids, while I cried and puked in a pitch-black room for days. Between the anesthesia and pain killers, I was just wrecked. I called my sister and said it was the worst decision I ever made. My mom would have to force-feed me a tiny bit of a cracker; a bite of a banana was an accomplishment. Nothing helped the pain, sleeplessness, and discomfort. I've never felt so horrible in my life. I was like, "I did this to myself; what was I thinking?"
When Angelina Jolie talked about the importance of Brad Pitt, that really jumped out at me. It was such a hard recovery; we lived with my parents for two weeks. I had drains coming out of me. I needed to be taken care of, in addition to my kids being taken care of. I couldn't be alone with my baby son for six weeks, because God forbid something happened and I couldn’t reach for him and lift him up. I'd try to kiss him and snuggle him, but I was afraid he'd kick me in my breasts or pull a tube out. I'd just kiss his cheek — that was all I could do.
My daughter is 4, and she is starting to be aware of the female body. Before the surgery, we said, "Mommy has some boo-boos on her breasts ... she's going to get them fixed." When I got home, she was so happy to see me. She was so gentle. She wanted to see what was going on with the bandages and gauze. We let her see anything she wanted to. It took away the fear and the stigma.
A few days after the surgery, as I started feeling better, I could sort of tell what my new breasts looked like. I have a thin, but curvy body, and I was scared I'd look disproportional. But they're fine! I was a 34D, now I'm a big 34C. The difference is, now I don't have to wear any underwire! Eleven days after the surgery, all the bandages and drains came out. They're healing really well.
I had planned on going back to work after three weeks, but there was no way; it took more like six weeks. It's a little awkward because I don't have cancer, but it's not like I was getting a nose job, either. Plus breast-talk is weird, especially with male colleagues; you mention your breasts and it's only natural for someone to look at them.
Around when I hit the three-week mark, I got sudden and continuous muscle and nerve pain. It's called Post Mastectomy Pain Syndrome. It's common. I had to take muscle relaxers and anti-inflammatories consistently. Also, I needed physical therapy because after the mastectomy, you can't lift your arms above your shoulders for weeks; you can't get a glass of water above the sink; you can't drive. Once you start using those muscles again ... let's say, to go to the grocery store or even just brush your teeth, you're so exhausted.
This past week was the first time I lifted my son since the surgery. It had been just over six weeks. There was sharp pain in my back from not using my muscles for so long, but I did not care. It was absolutely amazing. I rocked him to sleep. It was the best feeling in the world. It makes me cry even thinking about it.
Like Angelina, I don't feel like the surgery has taken away from my femininity at all. In fact, I feel more womanly than ever. I took control of a situation for the sake of my family. I made a really hard decision that I'm extremely proud of. That's what women do, isn't it?
Sure, the recovery was hell, but I don't regret it. I've been buying sexy bras and going bikini shopping; there are no more MRIs, no more mammograms. Once a year, my doctor will manually check my lymph nodes, but that's it. It's crazy — you go from constant surveillance and fear, to this great sense of relief.
As told to Alyssa Shelasky.
Read more posts by Shira Krance
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double mastectomy
,surgery
,angelina jolie
,breast cancer
,brca 1
,brca 2
,breast cancer gene
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