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Tuesday, April 1, 2014

My body, my self

A little update on what's happening underneath my shirt. I have one implant, in the right side. The left side, the cancer side, has nothing. Each side has a horizontal scar. The left side is clamped down in odd places because of gluey scar tissue, all folded over and weird. The burn from radiation is still visible, and my skin is still kind of crepe-y. I'm in a holding pattern for reconstruction.

When I undress for the shower, I don't look much in the mirror.

When I get a glance from someone pretty, or even a catcall from a creep, I think, "if only they knew."

If only they knew what I really looked like.

I'm scarred up, but more than that. Cut off. Not neatly flat where my breast used to be, but folded over, lumpy, fragile, stuck down, discolored. Full of evidence of cuts and burns.

Damaged, deformed. Repulsive. Monstrous even sometimes.

I know this is irrational. When I undress for doctors and residents and therapists, no one recoils. It's nothing they haven't seen. I don't feel the same when I look at post op mastectomy photos of others. Just me.

A friend asked me yesterday how I know where to begin in the business of marching forth. I said I think of what I've lost, and how to get it back or find something new.

My work for this month is this. To get back some kind of acceptance of my body.

Just before diagnosis, we had reached a kind of stalemate. My thighs weren't  weren't getting any thinner. Belly no flatter. We shook hands and agreed to disagree. For the first time in since age 14, I wore shorts with impunity. See, I'd spent a year dieting for our wedding, denying myself cookies and slices of pizza, sweating every morning on the Wii fit, all for a paltry 7 pounds. Which I instantly gained back on my honeymoon diet of gallo pinto and piƱa coladas.

I made a deal with my body, and then the bitch stabbed me in the back. And shot herself in the foot. That cancer feels like a betrayal is something that's been said many times over. But maybe that's the bigger source of my revulsion. Maybe, in addition to how it looks, I hate that part of my body because of what it did.

This month is about understanding why, seeing for what it is, and being okay with it. Maybe even loving it, but that feels like a stretch. I'll be doing various exercises, ranging from solo dance parties to chakra therapy, to try to reconnect, and feel okay. And obviously, I'll be telling you all about all my zany magic spells.

There's something about owning what I look like that feels important. Though I will often waffle back and forth, feeling like this sentiment is shallow and anti-feminist. Feeling like I'm weak for caring at all. For not being able to live like Audre Lord, declaring reconstruction a lie and using my new body as a political tool. Other times, I feel like, these things were important to me before, so why shouldn't they be now? I feel like there's this sense of, you're alive, be grateful and don't complain. But don't I have as much a right as anybody to want to feel okay about this?

In some cosmic irony, I forgot to wear my prosthetic today.


  1. Came across your post today.
    While I have 'completed' reconstruction (as of a week ago Monday), your words resonate on so many levels.
    Acceptance seems like a solid goal regardless of circumstances yet, on a hard day, please give yourself a break and remember millions of women (even those whose bodies haven't betrayed them and whose bodies haven't been slashed, burned and poisoned) deal with body image issues daily.

    It's okay to b*tch about it!

    Here's who I wanted to be:

    But I am who I am. We all are.


    1. Thanks :). I try to remember that -- and try to remember that I worried about this stuff before. There's a weird guilty feeling, or something like that, that pops up still.

      Love your blog!

  2. My reconstruction (14 months ago) ended in a miserable failure complete with some rare form of staph and 24 days of IV antibiotics, implants removed after 3 weeks. I have 20 inches of incision, folded over itself and puckered, stuck with scar tissue and bulging weird with extra skin.

    It's not so much acceptance as defiance in that I refuse to wear my prosthetics (they irritate the nerve endings and are psychologically uncomfortable for me to wear - like strapping on cancer every morning rather than just getting up and going with what I'm left with). I call my chest the "donut peaches" - if you've ever seen donut peaches, they curl and pucker around themselves. That's what I have.

    And I guess I just march forward with a "it is what it is" attitude. Not sure that I've accepted it so much as accepted that it can't be what it was nor did it end up what I had tried for. It's defiance - defying society to ask me where my breasts are. Just once, one day, someone is going to say something and then I guess I'll really figure out how I feel - because I'm sure I won't keep quiet.

    1. Oh my god, that sounds awful. What caused the infection in the first place? I'm guessing you were in the hospital all that time?

      Mine looks like a donut peach too -- perfect descriptor.

      It's a big one, I think, when you realize/accept/know that it will never be like it was before; that reconstruction is really a misnomer.

      I love your defiance. Big hugs!

    2. 4 days in the hospital, 20 days on home healthcare with a PICC line and not allowed to go anywhere other than "church, the doctor's office, or to procure food". 90 minutes of heavy duty IV antibiotics every morning and 90 minutes every night. I am not complaining because I know I was lucky (no chemo) - but it definitely threw me for a loop to go through all of the pain and muscle spasms with the expanders for all of those months and then end up losing the implants to infection 3 weeks after I got them. They were so soft (as opposed to the expanders) and felt so much more like boobs. They almost even really looked normal in a bra. I could lay on my side! Oh well, mini-grief session over.

      The infection was behind the pectoral muscle, so basically hospital acquired.

    3. I think you have every right to complain. That sounds so, so hard. I'm glad you were able to be at home. Did a nurse come to administer?

      How is it now? Any residual pain?

    4. My husband played nursemaid and after *very limited* instruction, was placed in charge of my IV. I had a home health nurse once per week to change the dressing and draw blood.

      Residual pain? Three residual issues that are mostly a nuisance/something I'm mostly used to.
      1. Numbness - I knew this going in. I can't feel most of my chest. I have an alley right down the middle that has basically normal feeling. My right side has no feeling until about midway under my armpit. Left side has no feeling until right before the armpit.
      2. Nerve endings - oh, how they ITCH. It drives me crazy if I wear a tank top/undershirt with lace or a thick seam or weird neckline. It rubs the nerve endings and they itch. I lost the random shooting piercing pain after a while. But the nerves drive me crazy some days because I can feel the itch but can't receive the scratch. It itches and no way to soothe it. Ugh.
      3. Muscle soreness - I do have residual muscle soreness. My pectoral muscles were cut 3 times in 6 months - the double mastectomy, expander to implant swap, implant removal. If I lift something really heavy or move too quickly, the muscles will protest. I splashed boiling pasta water the other day and I jumped - it hurt really bad. I thought "Wow, I got burned" and then realized that my shirt wasn't wet at all - just the sudden movement made the muscles/nerve twitch in a way that hurt. For a second I got all excited that I was burned - that I felt the boiling water. But then I did a hot water in the shower test - moved the nozzle back and forth - I don't feel it at all except right down the middle.

      I was doing yoga last summer and it helped a lot with range of motion and incidental soreness. I didn't have a lot of strength or the ability to hold my full weight, but it did help with every day muscle pain. I get really stiff if I don't move around a lot. But I do count myself lucky because I can lift my arms above my head - didn't lose range of motion really - barely an impact on that as long as I keep moving my arms and stretching.

  3. I so hope you find peace with this one... it is so tricky. I have a few tiny scars from surgery - nothing close to what you have been through, so I can't really comment, I know.

    Whenever I see my little scars, they make me feel humble again and so grateful I got away lightly - makes me realise that whatever happens, as long as I'm healthy I have no right to complain.

    Thanks for your inspiring blog!

    1. It's weird how relative all this is, isn't it? There are so many times when I feel profoundly lucky. But then, it's within this greater bout of bad luck. I picture a kind of Venn diagram.

  4. When I look in the mirror (something I very seldom do), I don't see myself. I see a different person. I guess that is how I have sort of reconciled myself to this whole thing. I will never be the same physically, emotionally, mentally or spiritually. I am learning to make peace with this new person and eventually you will too. Your blog is inspiring and so are you. I wish you the best.

    1. You're right, it is like seeing a different person -- though for me, I'm still way harder on the "me" different person than an actual different person.
      Thank you for acknowledging not being the same! I feel like there's this pressure to get back and be the same.