My new survivor friend, Maria, in writing about her double mastectomy, said, "It's like I have been erased." Her words took my breath away.
Yes, that's what it's like. Looking down on my chest, and seeing that flat line, really is like being erased. It made me feel small, insignificant. Unsure.
On Friday, I will get one step further to filling in the painting that is me; instead of blank spots on my chest (like after mastectomy) or pencil drawings of general shapes (like now, partially reconstructed with placeholders) we will begin to paint color and form. It is very symbolic to me in my journey that I get breasts back, and it is important to me to restore myself to some semblance of normal.
Today at the gym, I saw the looks. Confusion, then sadness or kindness or both, when women in the showers saw my deformed chest. I hope that soon it will not be quite so obvious, to them or to me.
On Monday, Tessa and Jessie and I were together, and the girls wanted me to read them a story. I sat on the couch, a beautiful little girl on either side of me, and we pulled out the first book. I tried to put my arms around each girl so that she could lean on me as we read, and it was impossible. My left arm doesn't lift that high, and my expanded chest is simply too rock hard and painful to allow a snuggle. In that moment, when I felt so filled with joy at the simple pleasure of reading with inquisitive, playful, loving children...I became filled with anger that I can't even cuddle, that I can't move the way a normal person can move.
I can't lift my arm to do the most basic of things. Driving is painful when I need to do shoulder checks, when I need to make a sharp turn, or when I need to pass a snack or something to Tessa in the back seat. Taking things out of the top cupboards is an act of will and balancing. Dispensing shampoo from the bottle, hanging at eye level in the shower, means standing on my tiptoes to raise my whole body where my arm will not go, so that I can catch the pumped shampoo. Walking with Tessa means gritting my teeth when she wants to hold my hand and hop and skip because it hurts my body. I refuse to NOT hold her hand - she is my daughter! - but I am so, so tired of the aches it causes.
At night, I awaken many times because of the discomfort or pain of rolling over; I can't get comfortable, and so I'm always tired.
I am tired of these minor, yet many, compromises. I want to just be able to move freely. I don't need to be able to lift weights, or to hang from a bar, or to do a lap of butterfly...I just want to stop hurting from doing normal, everyday actions. Now, I do some of these things, but it hurts, and it tires me, and it pushes me to the edge. But what else would I do - not drive? Of course not. I push on through.
Surgery is one step towards fixing that. Hopefully removing the expander will remove much of the discomfort; hopefully they'll be able to remove scar tissue without further damaging anything and I will be able to lift my arm again. For these reasons, I am looking forward to surgery. BRING IT ON!
But I'm scared, too. This is my 7th surgery since diagnosis. I know what it feels like to recover. The anesthesia makes me feel lousy, the pain meds make me feel lousy, the incisions make me feel lousy. Drugs to sleep, drugs to kill pain...drugs that numb my mind and make me an incompetent mother for the time-being. I know all too well what that feels like, and I'm bitterly resentful of it. I'm resentful that I will not be able to hug Tessa, or to let her hop along beside me as she holds my hand, while I heal. That I will not be able to make healthy meals for us, that I will not be able to do much.
This too shall pass. I hope it passes quickly, because I can't help but dread it. It IS worth it to me in the end, but it is still a terrible burden.
If this surgery goes perfectly, there will be one more surgery (nipples) and then tattoos (aereolas). If things aren't perfect (the implant on the left could slip like the one on the right, or they may be different sizes, or pointing in different directions....the radiated side may perform differently than the non-radiated side, even if we do the same procedures) then we'll need another corrective surgery before nipples.
I pray that I'm done with all surgery by my two year diagnosis anniversary, June 1. Two years seems like ENOUGH. I'll still be doing Herceptin through September, and Femara through 2011, but isn't two years of surgery ENOUGH?!
In a month, I will be able to hold Tessa tight to my chest, without hurting. My port will be gone (part of this surgery) and her head won't bonk it, making me yelp. I should be able to sit with a child on either side of me, snuggled up on the couch to read a story. Maybe I'll even be able to push Tessa on the swings, yelling "Underdog!" and hearing her laugh as I push her ever higher, running beneath her as she soars through the air.
I can do this. I've done worse. But with each successive surgery, it gets a little harder. I know what I'm getting into.
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