Previvor Imposter

 It's really difficult to explain the imposter syndrome I feel right now. Tomorrow is National Previvor Day. It's for anyone with a high risk of cancer who is doing something about it--whether that's extra screening or genetic testing or surgery. It's for me. I'm a Previvor. 

I had my double mastectomy four weeks ago. Looking at me at work, you'd have no idea. I've got expanders giving my chest some shape and while I may shy away from lifting anything, there are no other signs of anything physical happening.

I also feel fine. I have good energy. I have good strength. I also have some discomfort of bra hitting expander--but it's minimal. 

I keep seeing videos of women sharing their experience with their mastectomy, setting their phone up to show their husbands gingerly lifting them from their bed or couch, because they are not able to lift themselves. Their bras are full of surgical pads to protect their incisions. They look tired and annoyed and sad.

That has not been my experience. Never once did Brendon have to help me get up from a seated or laying position. I did require his assistance to wash my hair--after more than a week of no showers. I lay down on the counter at our kitchen sink and he had to wash my hair several times because not only was I not allowed to get water anywhere near my drain sites, but I also couldn't lift my hands above my head to scrub my scalp. Those were doctors orders--not physical limitations.

People keep asking me how I feel and I feel fine. No, the expanders do not hurt. Not really. I have zero feeling in my skin so if it hurts to stretch it, I don't know. I don't feel the needle go in when they fill them a little more each week. 

I am struggling to find a good bra to wear. My boobs are not a very appealing shape right now. The incisions stick out awkwardly, looking like Frankenstein's monster despite the surgical tape that still covers them. The expanders are hard in some places and soft in others so sometimes I feel like my chest has rocks in it and sometimes I find a pocket of pure liquid. I can see the harsh outline of the expander under my skin, causing dips and rivets all along the edge. 

No one knows the real process of a mastectomy and reconstruction so I feel a responsibility to share.

You have the mastectomy. That is the amputation. For a lot of women who are undergoing treatment, this may be step one. Chemo and/or radiation may or may not come next and whatever that treatment entails may determine what type of reconstruction you can do. You have four options for reconstruction:

1. Flat enclosure. They can sew up your skin and leave you flat. Many women choose this option to save themselves from any future surgery or issues. Flat is simple. 

2. DIEP Flap reconstruction is when they take fat from another part of your body, usually the belly or thighs, to create a new breast. You need a good amount of fat to work with and you will have large scars where ever they take the fat from. This is a complicated surgery, because there is always the chance it won't work, but a lot of women like it because not only are you getting rid of fat you don't want, but your body doesn't have anything plastic or silicone inside of it. I was not a candidate for this type of reconstruction.

3. Direct to implant is when they preserve the skin after mastectomy and place an implant at the same time as that surgery. This is a great option if you want to downsize your breasts slightly or keep about the same size. Some women find they need to have a breast reduction before this surgery so they can have their nipple relocated. I wanted to go a little larger so this option would not work for me.

4. Expanders to implant is what I chose. That means at the time of my surgery they placed plastic expanders inside my chest. They are attached to my pectoral muscles but they sit on top of the muscle. Implants can go over or under the muscle. Some surgeons recommend under the muscle to create a more natural transition from collar bone to breast, particularly for thin women, but if you exercise your pectoral muscle too much it can push your implant off your chest. So if you're a gym girly like me (I don't look it, but I am!), they recommend over the muscle. Expanders are filled 50ccs each week with saline until you decide the size is just right for you. This slow process stretches the skin a little more each week. It needs to be done in an office by a surgical team to avoid any chance of infection from the needle being poked into your skin. Once I decide they are the right size, then we will schedule another surgery at least 8 weeks out, to remove the expanders and place an implant in the pocket that the expanders created. Judging by how my expanders currently look in my chest (or the fact that I can still see them under my skin), I will likely need some fat grafting from somewhere else in my body. This means they will lypo-suction some fat from my belly or thighs, and place it around the implant to smooth out the look.

It's hard to decide when they are full enough. I currently have more boob than I have ever had before but they aren't very noticeable when I'm fully clothed. And without clothes they don't look like normal breasts, or move like normal breasts so there's no easy way to say "Yep, those feel right." They don't feel right. At all.

I'm nervous about that second surgery. I've heard the fat grafting is painful and there's a chance that fat that is moved might just absorb into the body and not stay put where we need it. 

Without the fat grafting I've been told the reconstruction surgery is pretty easy.

I feel a desire to talk about my experience all the time--but no one asks, because it is weird. Because I look fine. Because what would you ask if you know nothing about any of it? How much do I get to share before it becomes my entire personality?