Top menu navigation

Wednesday, October 22, 2014

The cheese stands alone

Crying in the cheese aisle, and it's been a while.

There are days, many many days, where I see my future life unfold before me in a glorious long, deep, bright haze. Unknowable, except for its existence. Its probable existence.

And there are days, like today, when that lovely haze murks up, promises nothing. Nothing beyond putting my hands out in front of me and feeling, feeling, without knowing how far I can go. 

So, deep in the murk, I abandon the thought of groceries. I leave the market the sparkling produce section, and into the rain. I check my phone. I'd sent an SOS ten minutes prior, but it's rush hour and everyone is likely on the subway. I should go home, I should go home. Cry in the shower. I get on the train.

All this brought on by a little pain in my back. It feels muscular, probably a strain from my recent stint at the gym, or tendonitis from a too large! too heavy! pocketbook. (Pockabook, is how I say it.)

All this brought on by the last two years. There is nothing that is "oh, it's nothing," anymore. It all can be a hideous something. Something that kills.

Maybe you think me melodramatic, but this is my head in this moment. It. Never. Goes. Away. Waiting for the other shoe to drop. Especially when other things are good. Hubristically good. Happy, not fighting, new opportunities. Not feeling sick. Looking nice. It lurks there, in those places.

Four bars for a moment underground, and the texts come through, and I'm crying again. Where are you? Let's meet. Call me. I cry because I love these girls. So, so much. 

I tell them I'm okay, nearly home now, seeing the doctor by chance anyway tomorrow. I know it's probably nothing, but these tears don't come a place of knowing, a place of facts. They come from a place that's dark and hazy, recalled as if in a dream, except that it was my life.

I remind myself that this is, historically, a hard time for me. Multiple freakouts in two previous Octobers. I should have expected this. 

I say this so you know that it always lurks. Those lucky enough to be classifed as no evidence of disease (and it is LUCK, not gumption or positivity or strength or bravery, but fucking luck, some of the time anyway) spend lots of time in the nice haze. But the haze is still the haze, changable and obscure. Terrifying or comforting. 

Most people are afraid to die, but don't think about it much. I'm afraid to die, and sometimes I think about it much. I'm not alone in this. So please be gentle and kind, and try to understand.

I'm okay now, I really am. I'm with my dog and I'll take a bath, and wash it out of my hair, like my grandma used to say. There will be benzos, and fancy beef jerky, and bergamot oil in the steaming water.

Monday, October 13, 2014

Today is Metastatic Breast Cancer Awareness Day

For all the pink triumphal arches, for all the celebration of survivors, there's one group of breast cancer patients that the average person does not see splashed across the pages of a magazine: people with metastatic, or stage 4, breast cancer.

Metastatic cancer is when breast cancer cells take up residence elsewhere in the body, like the bones, lungs, or brain, and grow there. The five year survival rate for metastatic breast cancer (MBC) is about 20%.

20 - 30% of patients diagnosed with early stage breast cancer will go on to develop stage 4 disease, and each year about 40,000 people die from breast cancer in the United States.

My friend Sherri was one of those 40,000.

I met Sherri online, on We both started chemo in September of 2012, after having both been diagnosed over the summer with stage 1 cancer. We both had bilateral mastectomies, and we both held a giant party right before surgery. Mine was called A Farewell to Boobs, hers was Say Ta Ta to the Ta-tas. We were both on the young side. We were both scared.

Revisiting her blog today I was struck by her joy, her will, her generosity. Her gratitude, even in the face of so much loss. She invited friends and wore a tiara to her last infusion of taxol in 2013, and her party got so raucous they got kicked out of the chemo suite!

She took her medicine, she bucked up. She said fuck cancer. She did it all. And still. And still. She found that the cancer had metastasized in September 2013. More chemo, then radiation. Then, last month, she died.

She did it all. She held up her end of the "early detection, stay positive" bargain. And still.

Fifteen years ago, my beautiful, incredibly kind and creative aunt was diagnosed with breast cancer, and seven years ago, she died. She was brave, she was powerful. She took her medicine. And still. And still.

40,000 Americans die of this disease each year. That's more than the number of Americans who died in the Korean War, every year.  That's more people than fit into Fenway Park, every year.

And still, metastatic breast cancer receives less than 5% of the research funding devoted to breast cancer.

 Learn more, and please donate to fund metastatic research, at

Wednesday, October 1, 2014

Post Op

Home from surgery now, and feeling uncomfortable, but okay. Spent yesterday chasing Vicodin with Kit Kats. So you know, not a bad way to spend a Tuesday.

For my first fat graft in July, my friend and amazing photographer Felicity Palma ( came by to shoot some images of the process. Felicity has undergone treatment for breast cancer too, and is working on a project documenting other young women. I am including a couple after the jump (fair warning: there's a bit of blood.)

Monday, September 29, 2014

Sunday, September 28, 2014

Reconstructing Emily

Tomorrow I return to the OR for my latest stab (eek) at reconstruction. To recap: In August 2012, I had a double mastectomy, and tissue expanders were placed then. A couple months later, during chemo, I developed an infection and my tissue expander was removed and replaced with a new one. Then I did radiation, and my skin fried so bad that it broke apart at the seam. The expander was removed and replaced with a soft saline implant. Same thing happened again, and the implant was replaced again. Finally, in August 2013, the implant on the left side was removed. Each time, the most damaged skin was cut away. Since last August, there's been nothing there. I've been holding a little crocheted booblet of my own design next to my heart since then. Over the summer, I had a fat graft, taking a small bit fat from other, um, more endowed parts of my body and pumping into the vacated boob spot. The goal was to use the fat to nourish the tissue post radiation. Tomorrow, we will do that again, except with a lot more fat.

This will be my 7th surgery. Why the fuck am I doing this?

It's a real question. It's one I've asked myself many times. Why am I putting myself through this process? Why not pull out the other implant, and be done with it? I've considered it. A lot. After all, what's my motivation here? Why am I doing this? Is this an anti-feminist act? I am subjecting myself to pain and countless surgeries just to satisfy some societal requirement that my body be pleasingly "normal"?

Reconstruction wasn't something I spent much time thinking about in the days before my mastectomy. I visited my plastic surgeon the day after my diagnosis. He talked a lot about the process, promised to take good care of me, and I was kind of like, "Thank you very much, I don't really care."

I think immediate reconstruction is often presented as the most favorable option because our surgeons are worried about the shock of suddenly having nothing where there was something. I think, as a whole, they worry that we won't be able to handle it, and that immediate reconstruction offers comfort from the loss. Having had it and lost it, I don't really think that's true.

Last summer, after my implant was taken out, I placed my hand flat against the left side of my chest, and felt my heartbeat. I hadn't felt it there since I was a kid. In a way, it took me back to my kid body, which is really just my body. The same one I've had. As separate as I've always felt from it, it is where I will always live.

This surgery tomorrow will focus on injecting small amounts of fat into the strong strips of scar tissue, with the aim of breaking them down. This has shown to be an effective technique, and I hope that after I'm healed I will finally have back my full range of motion. After that, we'll see. If my skin heals enough that a little implant can just be slipped in there, maybe I'll do that. Maybe I'll have to do an expander again. Maybe I'll do this weird space aged suction bra thing. Or maybe I'll decide to leave it be, and take out my other implant.

When I felt my heartbeat against my flat palm all those months ago, I understood the loss more profoundly than I ever had before. Without the stand in, the implant, I was able to truly know that things would never be the same. And as hard as that is to learn, it's necessary. It's necessary to know that "reconstruction" is a misnomer. What you get isn't a functioning, feeling, warm breast. It's just an implant, numb and dumb. I won't get back everything I lost. I just know that I've got to get as close to feeling good as I possibly can.

Right now, I feel I'm on that path. I hope that when this is over, I will no longer feel deep loss when I brush my hand over my chest. That I won't reflexively cover the left side of my body every time I lean forward, and every time I feel self conscious. Whether I ultimately decide to finish reconstruction or not, my hope is that in the end I will not be haunted by this scar. Instead of aiming to reconstruct my breast, which is impossible, I aim to reconstruct myself. To make myself again out of parts old and new. 

To make myself whole, whatever that means.