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Wednesday, December 31, 2014

Goodbye to the year of my experiments



On the eve of 2014, I decided, based on how things were shaping up, that it would be The Year of My Experiments. Namely because of the clinical trial, and because of this new type of reconstruction I felt strongly about trying, called BRAVA.

I was squeezed into the trial in the last minutes of 2013. I think I was the last person enrolled at Sibley. The trial is ongoing, as you know, and shaping up to be pretty groundbreaking. I'm proud to be a part of it.

The reconstruction technique, BRAVA, which entails a space-aged suction bra and several fat grafting surgeries, while fascinating, is something I decided not to pursue. My main reasoning for considering it were whispers I heard about being able to regain sensation in BRAVA boobs. For those who don't know, mastectomied chests are completely numb, something that's troubling not mentioned in surgical consults. But I couldn't receive real confirmation of regained sensation. And the suction bra is something you need to wear 8 - 12 hours a day, sometimes for 2 years. And it's enormous. You can't go out in it. And after two years of being sick and housebound, I shied away from yet another thing to keep me on the couch. (Believe me, I spent plenty of time on the couch anyway. Hello, Gilmore Girls on Netflix?!)

There were other experiments that I didn't expect. I tried out standing up for myself in ways I never have. Saying to people "You don't get to treat me that way," and generally calling them on their shit. And, to my amazement, fire didn't rain from the sky.

I made a move away from the job I've had for ten years, my entire adult life. It's a nice job, and I liked it, but it wasn't enough anymore. So I applied for lots of others, and got one that I realize now is so perfect, so right. I told people that I love that I can't stay with them anymore. And I wasn't swallowed up into the earth.

And I stepped outside my cancer shell, tried on some things I used to do, and found that I wasn't all gone, after all. I finished my novel. I rode a horse.

There is still so, so much to do.

Monday, December 22, 2014

There was some beauty

Six beautiful things from 2014:


1. A Second Embrace, With Hearts and Eyes Open, by Mary Elizabeth Williams

"Nobody writes songs about sitting on the edge of the tub while a man applies topical antibiotics to your oozing skin graft. There are no poetic odes to women with gaping scars, no sonnets to men who may be wearing the same shirt for the third day in a row."



2. Psychylustro, by Katharina Grosse





3. The Electric Body, by Matthew Seigel 
"Hello, hidden pain. So strange
how you resemble my old face.
Won’t you come inside?"



4. Strandbeests came to Miami




5. Woman Says Goodbye to Beloved Horse from Hospital Bed Hours Before She Dies




And finally, 6:

Thursday, December 18, 2014

Why the "War on Cancer" doesn't work


We Americans like declaring war on nouns –  drugs, terror, and of course, cancer. (I’d like to declare one on flagrant misuse of the apostrophe, but that’s just me.)


 

And a thousand cancer patients said, "No shit."

Aside from things I've said before about the problematic nature of the word survivor, and the idea of someone "winning" against their disease,  this study unveiled a new issue: they found that patients in the “war” group were less likely to engage in preventative behaviors, and general wellness. Because painting cancer as an external enemy ("An unstoppable rebel force," to quote Meet the Parents) rather than a part of our bodies, changes to way we approach it

This is interesting, and walks this really fine line. I am anti-patient blaming: it’s not the patient’s fault for getting sick. This might seem obvious, but there are real stigmas with certain diseases. For instance, with lung cancer there's an idea floating around that patients who had smoked deserve whatever cancer they get. That they don’t have a right to have feelings of anger or sadness, because they made their own bed. (And the even more intensely stigmatized disease, is of course, HIV/AIDS. But let’s stick to cancer, the devil I know.)

The truth is that cancer is part of the body. My cancer cells were made by me. It is not my fault that it happened; it was an accident of cellular division. But it came from within me. And that’s  hard to wrap my head around. Why would my body try to destroy itself? What the fuck did I ever do to you, body? (Wait, don’t answer that.)

The cancer-as-enemy idea correlates quite neatly, for me, to that of demonic possession. The idea of "The devil made me do it." Casting blame for wrongness, whether for a crime or a socially stigmatized thought or obsession, onto an outside actor can be attractive and comforting.

I’ll use an example from my own life – intrusive and obsessive thoughts. All of us have these thoughts one time or another – something horrible that pops into our heads for a second, seemingly out of nowhere. Many people are able to dismiss these for what they are – odd blips of the brain. But others, like me, can become obsessed with them. Why did I think of that? Does it mean that I am evil/violent/a criminal? This thinking becomes circular – fears that you are evil tend to lead to strange “thought experiements” to test your evilness, and those thoughts reinforce the idea that you are evil. The thought pattern grows out of control....kind of like cancer cells.

It’s attractive, for someone trapped in this circular thinking, to be able to blame something else, like the devil, for implanting those bad thoughts. 

In the same vein, it is common for people to dismiss actual criminals as simply evil, inhuman, rather than admit that within all of us dwells the potential for carnage and destruction, and that the wrong circumstances will unleash it. (see Milgram, et al.)

Carnage and destruction are possible not just externally, but internally. Everyone reading this has a cancer cell of their own making floating around right now. More likely than not, the immune system will find it and neutralize it.

But sometimes the immune system misses, and you've been exposed to the right environmental toxins, and you have the right gene mutation. And boom. The damaged cell divides and divides, growing its tumory self all up in your breast (or prostate, or kidney, lung, skin, brain, liver...).

What if, instead of fighting cancer, we sent love to it? Imagined healing the damaged cells, instead of annihilating them? They are just broken pieces of ourselves, after all.

The other thing about war is that many innocents die. And enough, please.


Thursday, December 11, 2014

Wild and Precious



Saw Wild tonight. Run, don't walk, people. Or actually, you probably should walk. But fast.

I read the book of course, and as some of you know, took a writing workshop with the one and only Cheryl Strayed over the summer.

The film is something else altogether now. It's the first time I've seen an adaptation as a companion piece to a book, rather than retelling. The gorgeous editing, the visual and auditory links between scenes actually enhanced my understanding of the book. The book and the film hold hands and sing.

Things have been happening, dear reader, to explain for my recent absence. I have a new job: community manager at this fine place. I'm leaving the one I held for ten years; my entire adulthood. I recently finished a draft of my novel (like, last night. Matt's reading it next to me on the couch as I type). 

When I found out I had cancer, my world became small. Cell sized. I could live and die by a single one. And slowly now, I'm fanning out again, world opening up like an aperture. Letting it all in. 

There was a time when I proclaimed that I simply refused to die from this. Something I have no control over. But I have control over how I live. And I refuse to live small.

So that's all for the moment. As things settle down I will say all I have been wanting to say to you. I will leave you with this:

Tell me what is it you plan to do with your one wild and precious life?

Mary Oliver
& Cheryl Strayed

Monday, November 24, 2014

More Required Reading






This week I've been reading Smoke Gets in Your Eyes, by Caitlin Doughty, mortician and founder of The Order of the Good Death.

Death has been on my menu lately. You might say, it always has. While my sweet husband didn't attend a funeral until he was in his 20's, death has been a regular presence in my life. When I was about a year old, my mom's father died. On the day of his death, I ate a tube of his Ben-Gay, and my dad had to give me syrup of Ipecac.

He died from cancer.

When I was seven, my dad's mother died. From cancer.

When I was a little older, my brother's best friend died. From cancer.

Then a great aunt, aunt, cousin, friend. All from cancer.

In 2006, my grandma died in front of me, my mom, my brother, my dad, in our driveway, on the way to the hospital.

So not a surprise, I guess, that over the years I tucked things away, ideas for my own funeral. It came into sharp relief when Matt was diagnosed, and I thought, "I really need to know what I want here." So here it is, for everyone to know:

I'm still deciding if I want to be cremated or have a green burial. But I want my remains, whatever form they take, to end up in a place with horses. I want a ceremony outside. I want selections from Leaves of Grass, Watership Down, and The Velveteen Rabbit to be read by people I love. These are texts I find comforting, and hope others do too. I love horses. I love outside.

I'm not dying now. Not more than anyone else is.

But all of us will die. And yet, when someone says "I started planning my funeral," as many do after a cancer diagnosis, tongues are clucked, and the person is told "Don't go to that place." Well, why the fuck not?

In her book, Doughty delves into the fascinating world of modern American death. The bizarre detachment we have as a culture from it, and how our funerary practices support and perpetuate that. How, despite our love of violent movies and zombies-as-trope, we are terrified of the corpse.

In graduate school, I spent a bit of time with antebellum American death. One historian that I quoted in a paper on the subject said, and I paraphrase: Sex and death for the Victorians are like sex and death for us, only flipped. Our culture shuns death, and it overt about sex, while the Victorians shunned sex and were overt about death.

And we all know how fucked up the Victorians were about sex. 

Walt Whitman was a medic during the Civil War, and he writes about piles of limbs, and dying soldiers whose hands he held. In this light, contemporary Emily Dickinson suddenly becomes not a reclusive, morbid early-Goth girl, but product of her time (in addition to a genius).

It is not bad to think about death. It doesn't mean you are weird, or wrong, or not nice. I think it is unhealthy to act like it will never happen. Because, as they say, it's one of only two guarantees in life.

I believe, more than anything, in the talking cure. So let the first step be this remarkable book.


Monday, November 17, 2014

He kindly stopped for me

The other morning, on the way to work, I found the body of a little bird outside my door. Still warm, but stiff. Eyes half open.

A dead bird has always seemed ominous to me. A harbinger of doom, or a reminder of fragility. When you come upon them, it's often hard to believe they're dead. They are still so perfect and beautiful, usually with no apparent injury or sickness. Like they just fell out of the sky. A memento mori. 

As if I needed one.

After Sherri died in August, I felt, I don't know, adrift somehow. I only knew her online, and in a sense she'd died for me before she left her body, because her posts stopped appearing. I cried many times before her death. But when she did go, I felt lost and empty, tears all dried up. I couldn't understand it, as stupid as that sounds. 

Last year, Showtime ran a series called Time of Death. It is an unprecedented documentary about terminally ill people in their final days. When it came out, I heard about it, I registered it, I filed it away as one of those important things that I wasn't ready for. After Sherri died, I decided it was time. 

Because death is visceral, solid, hard, and it felt as though she was spirited away, gone in a puff of smoke. I knew that wasn't true. I wanted to know what her final days might have looked like. 

I watched the entire series in a few days, while I was recovering from surgery. It was hard, undoubtedly, but not impossible. It was unflinching, it was kind. It was important. Most of the people profiled had cancer. They all died differently. As differently, probably, as they lived. Some at home, some in the hospital. Some with a glorious intention, others slipping away, struggling, not ready. Some surrounded by family, friends, nurses, cameramen, and one, completely alone.

When talking with a friend over the summer, he let slip, "If I die..." Not if, I said. When. When.

I wrapped the dead bird in a paper towel and took her to the garden. A policeman's funeral was happening down the block as I buried the little thrush, and the bagpipes started up as I poured earth over her body with my trowel.

I felt a squeeze in my heart for her, and all the other lost ones.

Friday, November 7, 2014

More required reading

All That Is Limitless

Hannah Gamble

I usually wake up with acquisition
in mind.

I make myself the tallest pine;
I have more birds on me
than anybody!

The sun hits my head
first—it’s cooled a bit
by the time it gets to your head.

I thought I’d get the most

if all the good saw me first
and affably went there.

It was sound,
my lightening rod approach.

One oversight
was that when the bad was coming
it also saw me first,

and would match its force
to my height in a way
that, I’m sure, if I had a stutter
or a limp
would be lessened.

In any case,
it’s time to get lowly.

Put on a formless gown
and call it a shroud
for your vanity, a gold braid
o’re your forehead

or a word you have
to explain
to everyone at the table.

Even if it wasn’t vanity, but hunger.
Even if it was mostly enthusiasm
and affectionate regard. An invitation
to join (less like “participate”
and more like “become an actual part of,”
cutting a part off so it fits
more snugly with the other part.)

Now you have a bed.
Now you have a table.

If the wood is still living
we’ll make not furniture
but a living structure:
We can do what we call grafting.
This too requires a bit of cutting.

A dormant bud
can be cut and grafted,
as can a young shoot,
but in all cases
the point of vascular connection
can end up weak
due to the varying strengths
of the two formerly distinct tissues.

Once I blew my nose in a cafe
despite the number of approximate men
in beautiful sweaters and I knew
I’d become another thing.

Now when a block is sawed up
it is made into implements.

The finest sculptor carves
the least. In this way,
the block rests
within all that is limitless.

 

Friday, October 31, 2014

An ugly truth



And here's the final one. "At least we caught it early."

Finding cancer early is not really cause for celebration -- something has already gone massively wrong, when, for instance as in my case, two married people in their 20's both get cancer a few years apart. We were both stage 1, so let's go to fucking Disney World? No. Something has failed. Environmental protection, genetics...and yes, our healthcare system, for not putting enough importance on finding the causes of these diseases.

It's not cause for celebration because you're not out of the woods yet. Depending on your cancer, you may not ever be out of the woods. And that's terrible, especially when you never should have been in those particular woods to begin with.

We aren't "winning the war on cancer" when we're diagnosing more people earlier. We aren't winning when people still die. We aren't winning when people still get sick.

My friend, Sherri, who passed away just over a month ago, was diagnosed early. Stage 1, like me. Early detection is not a cure.

Thursday, October 30, 2014

Positrons


"My most recent one is 'you are a failure on your fight against breast cancer without a positive and upbeat attitude.' You need to grieve, cry, and take to your bed a lot during treatment and for many times after. Your mind cannot will cancer away."
- Jo, breast cancerada

Oh yes. Oh yes. The old positivity trap.  There's so much subtle, and not so subtle, patient blaming in there. The idea that negative emotions build up in your body and make you sick -- somehow that notion survives still. Yeesh.

I think part of the problem is that a lot of people confuse "staying positive" with "getting the fuck on with it." Before I had any personal experience with cancer, I didn't think it was something I'd ever be able to handle, that I'd just cry and wail for months on end, or something. Shockingly, that's actually impossible. The cancer stuff becomes normal really quickly, and you cope with it with the tools you have. If you like to cope with a smile on your face, then do that. You might prefer crying into your dog's fur. Or you might like to listen to Rammstein and smash things. That's equally valid. For many of us, it's all of those things (though you may choose Megadeath).

I'm certainly not saying be negative. That sounds exhausting. But it's not fair for cancer patients to be harangued anytime we express fear or anger or sadness. This shit is hard! And it's not our job to make non-cancers feel okay about it.

Beyond just not telling people that they have to be positive, I think it's important not to tell people how to feel, period. So let's all agree to stop, mmmkay?

Wednesday, October 29, 2014

Puking pink

Pink dish gloves, pink full-of-BPA water bottles, pink fracking drills... You know how I feel about pink as a concept, I'm sure, but let's talk merch. Cause somebody's making a buck off this shit, and spoiler alert, it ain't us.

"I hate all the damn cancer trinkets people think they need to send you... and always pink! What the hell makes these people think I want to be reminded on a daily basis that I had cancer? I don't need a pink cow bell with a ribbon on it or a plaque with a cancer poem or key chains or pins or pens... If you really want to get me something, send cash cause the medical bills SUCK!"

- Amy, breast cancerada

I received my share of pink stuff after diagnosis, though I was spared some of the worst of it. There's something weird and creepy about being initiated into this pink club, where no matter what you're actually interested in/how old you are, you're getting a pink beanie baby after your mastectomy, damn it."Here, you've got this disease, you must love to wear earmuffs proclaiming it!"
 
And the unfortunate truth is that a lot of the pink merch doesn't actually amount to much of a donation towards research, if there is any real donation at all.





People want to help. It comes from a good place. But like Amy said in her quote, try to do something useful. The five bucks you spend on a beanie baby could be better used on, I don't know, a yummy fresh juice, or a movie on iTunes, or coinsurance for an onco visit. Some people like the pink, and that's fine. But don't assume that we all do. 

I know a person, a man, who once for Christmas when he was a kid got a G.I. Joe from a relative. But he didn't want G.I. Joe, all he really wanted was Care Bears. But he was told all boys like G.I. Joe, and he cried because he didn't like violence and wished people would stop forcing him into a gender stereotype.

It's kind of like that.

And if you really want to help someone with breast cancer, just show up with some dish gloves and clean their bathroom. Just make the gloves green, will ya?


Tuesday, October 28, 2014

More realness



This week we're talking myths and misconceptions floating out there in the pink ether.


"When I was trying to decide between a lumpectomy and a double mastectomy, people were "rooting" for the mastectomy so I could get "a free boob job." I went with the lumpectomy - they thought I was nuts. Some people also thought I was lucky to get to do chemo because "you'll get so skinny." Yeah, right."

- Staci, breast cancerada

WOMEN, amiright? SO LUCKY to be able to find comfort in the prospect of our bodies conforming to a crazily restrictive standard of beauty while being faced with life-and-death decisions. It really takes the edge off the breast amputation quandary. 

Sugar coating gut-wrenching health decisions might seem chummy and cool, it's kind of not. If the patient is making jokes, that's one thing. But unsolicited comments like the "free boob job" one negate the gravity of the situation. A person facing a mastectomy is about to have a part of her body amputated. For many, it's the most difficult medical decision they have ever made in their lives. Don't trivialize it, don't try to make it cute. It ain't. Don't make me show you my scars.

Also, guys. GUYS. (And girls.) Can we agree on some things about the female body? It's not okay to spontaneously comment about changes happening to a body other than your own. Ever. Even if you think it's a compliment.

And while we're on the subject, catcalling. Enough already.*



*I felt the urge to write, "Oy, with the poodles already." Welcome to my brain.


Monday, October 27, 2014

Let's be real

It's the final week of October. We've nearly made it through the pink storm.
But beyond just making it through the craziness, I wanted to add a little sanity. A little reality.

I asked my beautiful friends to share some of the myths and misconceptions that have rankled them in the two plus years we've been in this cancer thing together. I'll be posting them here this week (with some of my own mixed in. I need some outlet for all my rage.)

So without further ado:



"Of course we are all brave because we have to be. There isn't a choice. I'm pretty sure if anything about me changed it's my perspective and the fact that I've suffered PTSD but I'm still just basically me. Sometimes brave, sometimes scared shitless, sometimes wise, sometimes silly. Just me." 

- Neta, breast cancerada*

I started off with this one because Neta makes such an important point about the expectations that are thrust upon people who are treated for cancer. We are generally expected to be better, not sweating the small stuff, nicer, more "present". The reality is much for complicated. For me, I'm the same person I always was, except some moments when I'm not (and it's usually for the worse).

Check back each day this week for more!



*Cancerado/a is a word I just made up, based loosely on the origin of desperado, as an outlaw who doesn't stop to pay a toll on a road. This term is for anyone who's walked the cancer road, whether they paid their tolls or not. So yeah. I'm listening to the Eagles now, obviously.

Sunday, October 26, 2014

An exercise in distance

She runs down Eighth Avenue, dodging pedestrians and cars and baby carriages and bikes. She runs at top speed, left arm folded up, holding her necklace and protecting her chest. For a moment she feels part of some madcap scheme. But then, a memory.

"I haven't told anyone because I don't want them to think I'm crazy."

"That's a difficult way to feel."

And the day before,

"Half this city's on something, so get over it."

For as casual as she is about benzodiazepines, they are a one off. A cocktail you can have anytime of day. The milligram of Ativan is even a little sweet when it dissolves on her tongue.

But what she clutches, folded discreetly in a plain envelope, is something else all together now. A commitment.

"Six months," her therapist said. Not forever.

An antidepressant. She is disappointed in herself, though she knows this is ridiculous. She is scared, which is less so.

"Think of it as a reset." Plug in the wires that got unplugged. Send current through all the junctions again.

She makes it past the Google offices, the shuttered sandwich shop, the new and hideous gelateria. Back into the office, out of breath and sweating a little. Gone and back in twelve minutes. Heart beating fast, but not tachycardic like yesterday in the exam room. 

"We'll give you an X-ray if you want one. She got one of her ribs, where they (or some surrounding muscles) ache.

On the phone later that day, at 4:36, relief comes not when the X-ray is clear, but when she is told she can get this script. They close at 5, and thirty college students just arrived to tour her office. Hence the running.

The next morning she opens the bottle, reads the paperwork. It threatens in side effects much of what she hopes to quell. But she swallows the capsule, the little beads inside rattle all the way down.

Friday, October 24, 2014

For Spring 2015

Tunic by Acne Studios, bag by Moschino.


An X-ray for peace of mind, as my beautiful doctor is unconcerned about my bones. But my frantic little brain is another story...

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 through 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/is 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 classified 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, changeable 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 breastcancer.org. 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 METavivor.org.

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 (felicitypalmaphotography.com) 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.


Saturday, September 27, 2014



For one who went away last night, under the sliver of a crescent moon.

Tuesday, September 16, 2014

Aura Redux




Aura photography from a Chinatown crystal shop. Left, just after chemo, right, today. They have you sit in front of a grey screen, and put your hands on metal sensors, and they take a polaroid with a strange steel camera. The left side is what's past, the top is now, the right is what's coming. A dark aura (a see through one) indicates physical depletion; white light is uncertainty. Whatever you believe, it's fun to do, with a pretty picture besides.

Tuesday, September 9, 2014

28 grams

I've been thinking lately about weight, and waiting. Waiting for this experience to be over, though by now I know there's not a fixed day. Weight, as in the heavy lightness that now sits on my chest.

Before, my breasts were things to be reckoned with, cajoled into supportive, wired, multihooked bras. When I weighed myself, I always thought, "Well take off ten pounds for the boobs." (They don't count, obviously.)

They were so heavy that I dreaded the way they would look in old age, a hubris I can only laugh at now. But they were so, so heavy. Except in water.

I don't know how to swim...I took a class at the Y once, but didn't completely learn. But what I did experience why the way my chest held me up in deeper water. At home, in the bath, the same thing happened.

Tonight I take a salted bath and note my lack of buoyancy. The saline pouch on the right side of my chest sits comfortably, inertly. Left side just quivers at being exposed to the light and heat.

On my path report, I learn the truth about the weight. Right, 752 grams, left, 780. Just over a pound and half each, nowhere near the five I'd overly generously estimated. They loomed large in my mind, I guess.

But hang on, back to those numbers. Right, 752, left 780. They were mostly symmetrical, so does that 28 gram difference, that one ounce difference, account for...what? The tumors, I suppose. Added up, just ten pennies' worth of death.

Those ones are locked away in a freezer somewhere, and they can't hurt me anymore. (Played on repeat.)

Monday, September 8, 2014

Immune System FTW

Guys. GUYS. Some early results from the trial I'm participating in:


"One of only a few vaccines of its kind in development, GP2 has been shown to be safe and effective for breast cancer patients, reducing recurrence rates by 57%. Further, women with the highest overexpression of HER2 (known as HER2 +3) had no cancer recurrences when they were administered the vaccine after completing trastuzumab (Herceptin), a type of immunotherapy drug known as a monoclonal antibody." (emphasis mine...damn right)



If this is as good as it looks, then it's huge. Fucking huge. Go hug a goddamn scientist.


Wednesday, September 3, 2014

Mourning Phase

So, let's talk about clothes. I like 'em big, I like 'em shapeless, and most of all, I like 'em to be seriously deficient in CMYK. Here is a picture of my dresser drawer: 


A rainbow of flowy, stretchy, grey things. So the other day, when I saw an infomercial for Suzanne Somers's 3 Way Poncho, I actually thought "the black one's not half bad."


Sometimes I scare myself. 


But what's this all about, really? Is it just about hiding out, and waiting until I'm old enough to buy some Eileen Fisher and call it a day? Or is it some elaborate ritual that I'm instinctively taking part it, thanks to my high school years of devotion to Thomas Hardy?

The color black best represented the Victorian act of mourning because it symbolizes the absence of light and in turn, life. It was an instantly recognizable sign that a loved one had departed this life. It is also said that wearing black for mourning comes from a Roman idea; the mourners could prevent being haunted from the ghost of the deceased by cloaking themselves in black. 

Who is the loved one here? (By the way, "loved one" does not mean just someone you love, it means the dearly departed.) Is it the breast, the body, the old self?

I realize I'm asking lots of questions, and not answering any. Welcome to my brain. More clarity later loves, I swear it.


Tuesday, September 2, 2014

Postludes


Why do I identify so much with the jilted, post bc? (What's the correct term there? bce? abc?)

Also, note to self: stop forestalling joy. Had a chance to buy Karen o tickets but didn't because I wanted to "think about it." Now sold out of course. Isn't this something I was supposed to have learned from this instructive, what doesn't kill you makes you stronger cancer experience? Oy.

Thursday, August 28, 2014

"I'm sure he'll be fine."

Pretty brilliant take on illness and death. And it's English, so shallowness, lies, awkwardness abound.

Sunday, August 17, 2014

OMG PONIES

A few days ago, I was on the back of a black and white pinto, trotting around an exercise arena. And because I'm me, my eyes welled up with tears as we shuffled across the ring together.

I rode when I was a kid, on and off, for about ten years. I was a complete horse girl. I read every book, watched every movie, and every Christmas and birthday I nourished a small hope that maybe this was the time I'd get my own horse. Like most kids with that same hope, I never did. But I kept up my lessons, through moves and falls. I was a timid rider, anxious even, but I think that spoke to how much I loved them, that I stood up to myself and my fears.

I've never stopped loving them, never stopped gasping when I encounter one unexpectedly.

So aboard this little paint, in an English saddle, I started to feel like perhaps there was a part of me that wasn't gone forever. I spoke to her with my body, the old words coming up with ease. Nothing fancy or advanced at all, but when the owner of the barn told me I was "a good little rider," I flushed with a pride that I rarely feel, smile impossible to hold back.


In those moments, my body was not broken, or fucked up, or wrong.

A few times I had thoughts of, "Should I be using my arms this way?" "Am I hurting myself?" but I quashed them. I didn't care. And though my muscles complained, sometimes bitterly, later, I stand by it.

Blinking back those tears in the arena, I had a distinct feeling of this is it. This is what I need. After all this time, this is what it is. A girl and a horse.

I realized, finally, completely, that the path back to myself is not one I will walk alone.


I'm not unique in this, I realized after obsessive googling. It's not easy to find a barn when you're in the city. Even if I can't make regular lessons happen right now, I'm going to do everything I can. Here are programs for the other horse girls out there, that I'll be looking into as well.

Big Sky Yoga Retreats
My Feet Take Wings -- Breast Cancer Support Program
Riding Beyond
Horse Power for Life

Happy riding, my lovelies.


Monday, August 11, 2014

The Fault



Away again this week loves, so here's my recent post for ABC News, on The Fault in Our Stars. This is the longest I've gone without writing here! Also the longest I've gone without seeing a doctor. (Don't worry, there's still a whole mess of shit to talk about.)

Now I'm off to a darker place, to see the perseids.

Tuesday, August 5, 2014

Hello from the Omega Institute

Just to say that I am away this week, up at a writing workshop in Rhinebeck (with Cheryl Strayed...ahhhh!). Will write when I'm back, loves. For now, here's a mushroom outside my cabin. Medicinal? Magic? Who knows.




Thursday, July 31, 2014

A farewell to boobs


Yes, my shirt is falling down, and yes, those are drunk eyes (and yes my beautiful friend looks very amused by my silliness). It was my farewell to boobs party, two years ago tonight. After this I went and ate loads of french fries at Pomme Frites. I somehow tucked everything away and had a fucking fantastic time.

As evidenced by the drunk eyes and real (and spectacular) titties hanging out.

Sunday, July 27, 2014

And in short, I was afraid.



This week was the two year anniversary of my diagnosis, and to acknowledge the day, I planned to walk the circumference of Manhattan. I spent a lot of time thinking about what this act would mean or not mean. I thought about the way my dog circles me. I imagined walking a lasso around the island where I received my diagnosis and most of my treatment. But what does it mean? plagued me for while in the days leading up to the walk, until I settled on an answer: that it means whatever the fuck I say it means.

Satisfied with that, I thought about my route in the most basic of ways. That I would walk up the west side, along the Highline for its length, and let my feet guide the rest of the way. I would walk down the east side, maybe along 5th Avenue. I bought a backpack, and a fresh set of socks, and moleskins for my heels.

Morning of, I thought about how much water I should drink and how often. I thought about wearing my prosthetic, but left it out. It might get sweaty, and anyway maybe the day was about truth.

I thought about my hair, and braided it back as best I could, and wrapped an old chemo scarf around to hold it back. I thought about what those scarves were still doing in my drawer, a year and half after I stopped wearing them.

On the train into the city, I thought about the stares my body, one breasted, received. I wondered if it would be like that all day.

At the beginning of the walk, I thought about what a terrible, stupid idea this was. An hour in, progressing quickly, enjoying the rhythm and sweat, I changed my mind. I thought about finishing, tired and dirty, twelve hours later and taking the ferry home, sailing off into the sunset with the city at my back, while the credits rolled.

What I did not think about, was how I would feel if that didn't happen.

I did not think about how hot it was. I did not think about getting tired, and not knowing where to go. I did not think I could get lost on an uptown/downtown grid.

I did not think about the comforting pull of an icy subway car at the hottest part of the day. I did not think about the possibility of not finishing, because I am not a fucking quitter.

But late in the afternoon, just over halfway done, I'd somehow added something like 4 miles to my journey. It should have been about 17 at that point , but I was over 21. As I walked east in Inwood, I bought a coco helado that melted within seconds. I was heading east, but somehow I came to 10th Avenue and was confused. I continued and reached an oddly desolate Harlem River Drive. I got suddenly very hot, and sweat poured down, and I thought about what would happen if I fainted somewhere along that road in the middle of a weekday.

As I doubled back to the 1 train, and waited on the platform, I thought about what it meant to fail at this. That perhaps it meant, this (whatever it symbolizes) can't be accomplished in a day. That I can't do it alone. That the limits of the body are real. I rethought what I thought earlier in the day, in St. John the Divine, while considering the meaning of the Xu Bing phoenix sculptures installed in the nave.

At home, I stretched my muscles and felt hollow. I thought I would feel victorious. A friend texted and asked if anything surprised me during the walk. I wrote back that I did not expect to see blue herons and egrets splashing in Inwood Park. I thought they were catching fish, but it might have been garbage. It was impossible to tell which.

Wednesday, July 23, 2014

Walking Around the Center of the Universe

Or as the rest of the world knows it, Manhattan.

Two years ago today I found out I had cancer. So I'm circumnavigating Manhattan on foot. It's about 32 miles. So we'll see.

Follow me on facebook or twitter to watch my progress.

Monday, July 21, 2014

Blog Tour de France

Old me, Paris 2012
 
...Or just a blog tour I am participating in while wishing I was in France.

Anyway.



 
Who looks this gorgeous after a mastectomy? WHO??


The lovely Ann Marie Giannino-Otis, author of the funny and frank blog Stupid Dumb Breast Cancer, invited me to participate in this blog tour. I had the pleasure of meeting Ann Marie during a HuffPo Live segment she and I (and Angelo Merendino) did about photography and BC. I was honored when this fabulous lady asked me to join her in this blog chain!

The next part of this thingy is to share with you some of my blogging pals. Here are they are:

Olivia Howell - The Lovely Sisters


Liv and I go way back -- college, to be precise, when we lived in the same theme house. Olivia runs The Lovely Sisters with, you guessed it, her sister Jenny. It's a kick-ass lifestyle blog, so gorgeous photos abound, but it also comes with a healthy dose of wisdom and realness, as Olivia also documents her life as a working mom. There's a lot of Latin in there too -- shit you can use to sound real smart and impress da ladies, like this beauty: ad astra per aspera, or "to the stars through difficulties."

Ashley Lucas - Cupcakes + Owls



Ashley is a fantastic artist and illustrator (and fellow Jersey Citizen to boot!). She's written and illustrated numerous publications for kids, and her blog is full of adorable crafts and activities for kids and grown ups. What I'm most excited about is her upcoming very-cute-but-not-for-kids picture book, Angry Artist (illustration above). Oh, so much to relate to!!

D. Allen - The Body Connected

"In an environment where all bodies—even those declared “dead” or “damaged”—were useful, respected, and beautiful, I felt at home."

D. is poet and essayist I met during our residency at the Atlantic Center for the Arts last fall. D's blog is full of gorgeous, life affirming essays on nature and the body, like the recent "Wild and Searching Forms," from which the above quote was taken. D's band, The Sweetness of Gone, will similarly slay you. So just be ready with your tissues and waterproof gear.

The theme of this tour is writing process, and I have some questions to answer for ya. (Thank god...otherwise you'd get another weird meander through my brain like I posted last week!) So here goes:

(1) What am I currently working on? 

I'm in the final throes of my first novel, a little middle grade historical number. It's got a sassafrass 12 year old narrator, and it takes place on a farm in the 1920's. Basically my fantasy life.

My other project is more amorphous, and it's a memoir/research project, about the cancer experience, family history, and the history of medicine. I plan to work on this during my workshop with Cheryl Strayed (FUCK YEAH) this August.

And, you know, this blog.

(2) How does my work differ from others of its genre? 

I'll talk about the memoir project for this one. By incorporating the histories, I hope to recontextualize my personal experience. What does it mean, for me and all my rituals of medicine, that my great-great-great-great-great-great-great-great-great-great-grandmother was a tried and convicted in the Salem witch trials? SOMETHING IMPORTANT, I'm sure.

(3) Why do I write what I write? 

It's all about understanding this madness. It's all about "You're okay, I'm okay." Or not okay, however it may be. It's about reaching out into the void, and screaming.

(4) How does my writing process work?

I don't drive, so I walk a lot. Phrases will materialize while I walk, and I repeat them as I step, branching off in strange directions. Those little nuggets can often become the nucleus of a piece.

Friday, July 18, 2014

The Dead Duck Day

 When I was four, I rewound my favorite part of my favorite movie so many times that the video tape snapped. My dad had to performing emergency film splicing while I sobbed. (The movie, by the way, was Amadeus. I was a strange child.)


Growing up, we watched movies over and over. It's just what we did. Whole eras of my life are remembered not by things like who was president, but by which movies I watched over and over. In preschool, I made my brother run lines from Ghostbusters with me. In 4th grade, I saw Jurassic Park in the theater four times. I liked to watch City Slickers before my sporadic horseback riding lessons, because it would help me feel less afraid. There was one summer, before middle school, that I watched Apollo 13 every day. Actually every day. I tucked it in among the hours-long games of tag and planning a carnival for our little street, and sleepovers where my sister Miranda and my friend Dani and I would try to become psychic.

It wasn't just me; everyone in my family was this way. (Except my dad. poor guy.)

One of the films that had the honor of being one of our favorites was About a Boy. If you're not familiar, it's about a boy (obviously) who's struggling. He's made fun of in school, and he's lonely. His mom is depressed. A few minutes into the film, his mom sends him out with her friend and a dude (Will) his mom's friend is dating. The boy tries to feed some ducks in a pond, but winds up accidentally killing one with a giant loaf of bread. The adults take him home, where they find his mother has attempted suicide. Henceforth, the boy calls this day The Dead Duck Day. (Loads of other stuff happens too...you should just see it, despite my incredibly dreary-seeming synopsis.)




The Dead Duck Day. For the boy, Marcus, it's the turning point. The moment after which things can never be the same. Story-wise, it's the catalyst for change. The Dead Duck Day doesn't have to be the lowest point -- though it can be, the process of change often results in several even lower lows for the hero to overcome.

In actual life, there are many Dead Duck Days. Most of the time, you don't know that a day is a Dead Duck Day until a while later.

I realized that today is the anniversary of my personal Dead Duck Day. The thought floated through my head while editing photos as work. "The biopsy was The Dead Duck Day."

Two years ago today, I went for a mammogram. The tech showed me the microcalcifications, said I needed an ultrasound. That tech said I needed a biopsy. I lay in the darkened room, undressed from the waist up and covered in gel, and shook and shook, hands smacking against the table. The tech held me so the doctor could work. I was there for hours.

When I finally went home, I walked out into a biblically-proportioned thunderstorm. I was soaked within seconds; there were hailstones which, against the dark clouds, resembled the trouble spotted in the pictures of my breast.

At no point did I think, "This is the point after which nothing can be the same." Instead, I tucked the scrap of paper with radiologist's cell phone number in my pocket and thought, "What a nice woman."

But it was this day, and not the day I found the first spot of blood, or the day I was diagnosed, that was the last stop before cancer-land. That morning was the last time I was that other girl, the one who's presence I felt strongly for a while after, but who has since gone away.

I am in my coffee shop now, where I always come to write. Someone's phone just rang, and played the theme from Amelie, a film the other girl used to watch whenever she was sad.

I haven't done the over-and-over thing with a movie in a long time. Maybe that's why I feel so floaty and lost sometimes -- I don't have the same type of touchstone for my life the way I used to.

The thing about the Dead Duck is that it's a stand-in for the worst thing. The dead duck wasn't the most important thing that happened in Marcus's life that day, but it was how he accesses the truth about his mother. It was the moment just before the bad thing, that leads him in. Maybe that's why I remember my own narrative the same way, that the biopsy day was far scarier and kind of worse than the diagnosis day.

The Dead Duck is a way into the memory, but it's also a way out of it. There's a scene in which Marcus is yelling at his mom, about to bring up her suicide attempt in front of strangers, when Will swoops in and stops him by telling the duck story. Like the way I focus on my terror at the biopsy....it's a way to avoid the memory of the sadness five days later, I guess.

Narrative is always constructed after the fact, as a way to understand seemingly random and disconnected events. Meaning is not inherent, in anything. It is assigned. Marcus assigned the Dead Duck the weight of the suicide attempt, the way I have assigned the weight of the last two years to the biopsy.

In truth it was an awful, horrible experience. Many women feel that way about the biopsy process. But had it been negative, had I traveled on my merry way, I likely never really would have thought about it again. I might have gone home, watched a movie to take my mind off the pain, and found a new film for my rotation.