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Monday, December 30, 2013

Thursday, December 26, 2013

A life less shitty

Okay, last quote from Middlemarch, I promise:

"Her full nature, like that river of which Cyrus broke the strength, spent itself in channels which had no great name on the earth. But the effect of her being on those around her was incalculably diffusive: for the growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs."

I always felt if something was wrong for someone I love, I had to fix it completely. That there must be something that I could do to reverse the wrong thing. That if I could say just the perfect thing or give the perfect present, the sadness and hurt could be wiped away. I think others feel this way too sometimes. Sometimes, if they don't know the perfect thing to say, they don't say anything at all.

I guess its our narcissm that contributes to this. Our belief that we are powerful enough, important enough, to fix broken things just by wishing it. By getting some small thing right, we can fix everything. And become heroes, I guess, having commited "historic acts."

The thing that it has taken me my whole life to learn, and is so beautifully stated above, is that it doesn't work that way. The world is built on a few grand gestures, yes,  but also a million small ones. 

I think people feel overwhelmed sometimes by the largeness of everything, and how difficult it is to stand out. There are a thousand, or maybe a million, people in the world who are identical or very similar to me. The point that Eliot makes here is that it's fine. Not standing out is not a failure. Your talents can be put good use, and you can help many people in your own quiet way. And it means something.

Don't try to do it all. Instead, just do something.

If someone you know is going through someone rough, don't task yourself with fixing it, or even making it better. Just try to make it a little less shitty. Mom's dog died? Give her a hug. Neighbor lost his job? Buy him a cup of coffee. Friend's got cancer? Take her to a movie.  

The phone calls, the chocolate bars, the visits -- these make the difference between someone powering through and scraping by. 

This is my goal for 2014: Make things less shitty.     

Wednesday, December 25, 2013

Eves

On this night five years ago, I laid in my childhood bed wih the man who would be my husband. The house was cold; we spooned for warmth. In my ear, he whispered, "What if I have cancer?"

"I really don't think you have to worry about that," I said emphatically, turning to face him. He's only 27. It will really be okay. Biopsy just means looking and seeing what it is. Not necessarily cancer. Just looking at the lump in his throat as a precaution.

So imagine my shock, when four days later he got a somewhat roundabout diagnosis. "It looks like a lymphoma," the doctor said. But I digress. 

I am thinking about this night, Christmas Eve, five years ago.

That night I lay there so sure what life did not have I store for us. I'd checked in with my intuition. No disturbance detected. Later I would question myself. Why hadn't I known? Then later when it was my turn, I did sort of know.  But I digress.

I sit here in a darkened car, five years since that night. The end of the calendar year but already the beginning of the solar year. Reaching the end of the decade that I was supposed to be young and beautiful, though most of the time I did not feel that, and most of the time I should have. It wasn't until the last year or so that I began to be old.

I know now that nothing is impossible. That night five years ago, I thought things could be impossible. Then in July of 2012, I thought the same. I thought the statistics would protect me. It swings both ways, that. It's freeing and crushing.

Nothing is impossible. 

Tonight's eve is cold with a bit of snow. I light a candle with an expensive and satisfying match, and my dog leans against me in bed. Tonight's eve, I have hair again, but still no breasts. I think of the next eve, the next ten, and remember what I have learned: nothing is impossible.

Friday, December 20, 2013

Left out

So, I went on MSNBC today. I had a whole plan for an angry rant which didn't happen, unfortunately. But I did do something that I was proud of. Probably no one even noticed, but it was a big deal to me.

I was getting dressed, and obsessing about which colors you are and are not supposed to wear on tv (side note: the advice is to avoid white, black, and neutrals...uhh, that's my whole wardrobe). I hadn't yet put in my prosthetic, and when I looked down at my chest, I reminded myself to put it in. Would that be funny, I thought, if I forgot to wear it today of all days?

Then I thought again. What would happen? Nothing. I wouldn't have to explain anything to anyone. I as there in my capacity as cancer girl, so isn't it expected that part of me would be, um, abbreviated?

And then I thought about why I wear it in the first place. Is it to make others comfortable? To prevent unwanted questions? To blend in?

In Audre Lorde's The Cancer Journals, she brings up a powerful image. One of angry, single breasted women converging on some government office, demanding justice. Being single breasted is not "nice," and that was her point.

So I left it out. I brought it in my purse in case I panicked, but I didn't. Truthfully, I don't know if anyone even noticed.


Thursday, December 19, 2013

Hmm

I was just looking at my blog stats, and noticed someone came across this by using the search terms "xoxo breast supplement japan." Because why not?

Postludes



Would have been more appropriate during radiation, but the heart wants what the heart wants.

Thursday, December 12, 2013

Truth, from George Eliot

"We have all got to exert ourselves a little to keep sane, and call things by the same name as other people call them."

- Geroge Eliot, through the immaculate vessel that is Mrs. Cadwallader.

Still reading Middlemarch. There's something about an 800 page book that's grounding. Like, "I don't have TIME for your foolishness. I'm planning cottages with Dorothea."


Tuesday, December 10, 2013

Remembrances

This past Saturday was the one year anniversary of the end of chemo.

In preparation, or perhaps, remembrance, my body reverted back to my chemo state in a few small ways. I had a strange, metallic taste in my mouth for about a week. My joints throbbed, for no reason. My hair hurt. Hurting hair is an odd sensation, I think unique to chemo. Before it falls out, your hair hurts. Like when it's been pulled very hard, and aches afterward. That achey feeling comes just before the fall.

I breathed sharply with all of these. It's so easy to be transported back to then. And why was it even happening? Was it my body remembering and mourning, or simply acting out the role it learned last year this time? I think our cells do remember things, independent from our brains.

One year since finishing. I don't know where I thought I'd be, but I don't think it was here. Here, with a possible clinical trial and a new try at reconstruction. Here, not finished. Here, still feeling near the start.

But I have come a ways, maybe. When Pancho went badly lame this weekend, and I kissed and coddled him. I wondered if he knew that now he could let go a little. I could take care of him again. My stout-hearted and dependable boy. He was my most attentive caretaker, carefully sniffing my incisions after surgeries, scaring off all strangers, friend or foe, on our walks. Now I am cooking him dinner and ordering takeout for me and Matt. Pancho eats everything except the string beans, which he carefully spits out on the floor. I don't think it's anthropomorphizing too much to say that he feels he can ease off the intense care-taking. And so often, when that happens, the little pains we have been ignoring make themselves known. Hence his sad little kneecap, dislocated and staying that way for the time being.

Sad as I am to see my little one in pain, I know he will get better. And his faith that I will too, that I have already started, is fortifying. Sometimes you need someone to remind you that can, in fact, get out of bed again.

Wednesday, December 4, 2013

Rantgirl

Okay, so I got this letter.



This is actually the second notice. It was so skeevy looking that I thought the first one was a scam. But apparently it's real. The purpose of the letter was to get me to implicate someone else (an errant delivery truck, or trolls, or whatever the fuck) as being responsible for paying for one of my ER surgeries from over the summer. This company who sent the letter was hired by my insurance company to find out WHO THE FUCK IS RESPONSIBLE HERE and get some of Insurance Co's $$ back.

Excuse me, what? You want to know who's responsible for this? Because you're sick of dealing with it, paying for it? Well have at it. Start with this list of nearly 100 beauty products that contain the known carcinogen cocamide diethanolamine, according to the Center for Environmental Health.

That's one single carcinogen, in almost 100 beauty products.

It's completely gross that I had to explain to this random company that yes, I was being treated for cancer, and no, there is no individual they can sue to recoup some cash. What I didn't include in my explanation of the surgery, and wish I would have:

In attempt to avoid having one of these ER surgeries, I had an in-office procedure in which my incision was re-opened, skin was sliced away, and the wound was restitched while I was awake. No anesthesia. No valium. No bottle of hooch, no knocking me over the head with a brick. Just me and some pranayama. Many of the nerves in my chest were severed during my mastectomy, so I felt very little. However, whether you feel pain from a trauma or not, your body sends wave after wave of adrenaline. My body was telling me to run the fuck out of that office. But I didn't flinch.


So, you wanna go, insurance dipshits? Pretty sure I've got more staying power.

Oh the indignity.

I got "sirred" for the first time today. As in, "What can I get you, sir?"

End transmission.

Tuesday, December 3, 2013

Postludes


I want to send this to my insurance company.

Also I just want them to accept that I will continue to cost them a shit load of money. $499,614* billed and counting.

* That's what was billed. They don't actually pay anywhere near that much. But I'll be damned if I ain't worth it.

Monday, December 2, 2013

Extracurricular

Instead of cooking dinner tonight, I went in the bathroom and did very dramatic makeup to the left side of my face only. One of these puppies made an appearance:

Yes, those are sparkle lashes.


I listened to Stevie Nicks's Landslide on repeat the whole time.

I feel this is an important thing for people to know about me. I wish I could blame this on chemo brain somehow, but it's just me, ridiculous me.

ETA I further put off cooking dinner in favor of stomping around and obsessively cleaning the windows (again!) with rags made form my cut up radiation tshirts. End of chemo anniversary on Saturday. Paging Dr. Freud...

Friday, November 29, 2013

More Required Reading


"Here was a man who now for the first time found himself looking into the eyes of death -- who was passing through one of those rare moments of experience when we feel the truth of a commonplace, which is as different from what we call knowing it, as the vision of water which cannot be had to cool the burning tongue. When the commonplace 'We all must die' transforms itself suddenly into the acute consciousness 'I must die-- and soon,' then death grapples us, and his fingers are cruel; afterwards, he may come to fold us in his arms as our mother did, and our last moment of dim earthly discerning may be like the first." (Eliot 398)

My longed for wish has come true: I can read again. I've been reading books after the chemo brain hiatus and it's been glorious. I plowed first through children's and YA, and then contemporary fiction and nonfiction. And now Middlemarch, my old friend, has been my traveling companion for the last two weeks, and probably for two weeks more.

What I love about this passage is all that Eliot captures, all the depth and complexity that is achieved. The travel from terror to comfort. And how she neatly she communicates that odd moment when you understand your mortality fully. I read this and want and want to scream, "YES!" And then give it to all those "I could get hit by a bus," people. Because yes, smarty pants, you intellectually understand that you will die, but it seems likely that the fact has not knocked you over the head, or rammed you in the gut, or cut you off at the knees, and crushed your heart.

Which is not to say that the knowledge is permanent. I've had those moments of extreme clarity, followed by a blissful lack of foresight.

And is one better than the other? Of course not. It's just different. But frustrating.


Wednesday, November 27, 2013

The lock


A couple of weeks ago, I had my first real haircut post chemo. It was an important step to feeling like a human again. While I was in the chair, the stylist marveled at the new texture of my hair as she ran her hands through it. It was curly, and coarser, too.

"And it looks a bit darker, don't you think?"

I did think so, but hadn't been sure. I thought that maybe I was remembering my hair wrong. Later at home I pull out the braided lock she cut off for me last October. It was finer, blonder.

What she said was an acknowledgement of everything that's happened in the last year. She saw me, before and after, and noted a change.

It may seem like nothing, but it's important. Most of the time people say things like, "You look good!" which I know is meaning to be nice, but actually feels like something of a negation of this experience. It feels like they're saying, "You don't look sick," or like they're saying that it's over when it's not. I know I should just smile and say thank you and be grateful for the compliment, but it rankles me.

Am I like my hair? Have I become darker, and rougher? Maybe.

Sunday, November 24, 2013

Elegy for last week



On Sunday, I baked with a generous expert in her own kitchen, and made the pie crust that had baffled me my whole life. I went home excited to think about food again.

Roasted a chicken, and ate the challah I made with the baker.

On Monday, I began sorting through all the clothes I packed away last year. I started with the smallest basket, which I thought would be the easiest. It turned out to be full of my old bras. Awesome. Most of them I felt fine parting with; they were of the Macy's clearance rack, workhorse variety. But a few were very pretty. I tried on my favorite one, made of black lace. The first beautiful bra I ever owned, I bought it when I was 26. It cost something like $60, which I thought was ludicrously, deliciously, expensive. I was expecting to be swimming in it when I put it on. Even my right side, which has an implant, is much smaller than it used to be. I slipped the straps over my shoulders, and reached my arms behind me to clasp it. I realized I hadn't used my arms like that since August of last year. I did that motion at least twice a day, every day, since I was about 13. Fifteen years of a movement that can look impossibly elegant, or just impossible, depending on the equipment. And then nothing, for over a year, until that moment. I was full of regret, before I even looked in the mirror. It would show my diminishment. But when I looked, it was kind of okay. Believable. The bra little big, definitely, but I looked passable. Even the completely flat left side looked alright if I squinted. I tried on all the other bras in quick succession. I was thanking god for pretty lingerie when I took off the last one, a white one. There, in the lining of the left cup, was a dime sized dried up puddle. See, I never felt a lump in my breast. My symptom was a bit of blood, or serosanguinous fluid as they say, coming from my nipple. And there, in that soft lining, was the mark, the very last physical clue of my breasts. That I had them, that they existed.

Made pot pies for dinner.

On Tuesday I had a sore throat, and Matt pushed me to go to the doctor. "With your immune system..." he began, but I cut him off. "My immune system is fine. Chemo didn't hurt it too badly." "Why not?" I shrugged, and made muscle man arms.

Ordered pizza.

On Wednesday I saw my breast surgeon, and got disappointing news about the reconstruction process. Her recommendation: wait at least a year before proceeding. I thought I was ready to walk away from fake breasts, but it hit me hard, and I mourned the loss in a way I never did last summer.

Dinner, again pizza, with support group friends.

On Thursday I left work early, and ate a pie from Sunday while watching TV. Watching the Daily Show, I found some hope for the future of my chest while using the internet on my phone. I was elated, but Matt preached caution.

Went to an Indian restaurant, and my eyes were to big for my stomach. I had a little bit of everything.

On Friday my coworker asked if someone had kissed my cheek, but it was just an odd blush. Blood near the skin. Sanguine.

Lunch with a former professor. Thai curry, and jasmine tea that she found too bitter, but for me was just right.

On Saturday I cleaned my bedroom windows for an hour. Walking by everyday, I didn't notice how filthy they had become. I used six rags and half a bottle of natural cleaner wiping the glass and scraping out of the dust from every crevice in the molding. I cleaned everything inside; the dirt on the sill between the glass and the screen was another matter. It was too cold to open the window. I did the baseboards too. By the end I found it sparkling, but Matt said he'd never know the difference. The light shines through differently now.

Took fresh juice from the new place, and a two mile roundabout walk to get there.

Sunday, November 17, 2013

Going...going...


Losing eyelashes again, for the third time since chemo. The first time was about a month after, during radiation, when I actually got down to about one or to lashes. Second time was a thinning sometime in the late spring. Now, I'm almost a year PFC (that's Post Fucking Chemo for the uninitiated) and they're falling like snowflakes.

It's the tiny things that make us feel human, or inhuman. Like, during chemo everything tastes bad. Water tasted like pennies. WATER. The thing with no taste. It was infuriating to me. The big things, the headscarf, the trips to the infusion center, those I came to accept. The little things are what fuck with my psyche, and are what can push me over the edge. The big things get you near the precipice, the little breezes make you lose your balance.

So I don't wish on these lashes and blow them away, for that little stirring might be just too much.

Thursday, November 14, 2013

More Required Reading




"In the President's Cancer Panel report released in April 2010, the authors stated that cancers caused by chemicals have been 'grossly underestimated.'"

&

"...diagnostics and treatments are already measures of defeat: the tumor has already arrived. ...we need to think more about the bigger picture of health and, ultimately, prevention. Yet surprisingly few national research dollars--about 7 
percent of the budget of the National Cancer Institute--are spent on prevention, even broadly defined to include early screening."

Monday, November 11, 2013

Worst Possible

Here's Matt doing an impression of the "worst possible pain" face on the pain scale:


At Matt's onc's office. Five year anniversary of his diagnosis coming up in December. I believe the traditional fifth anniversary gift is something made of wood, so anyone know where I can get a hand-whittled version of Grand Theft Auto?

Wednesday, November 6, 2013

Ink


I love this video.

I used to be pretty anti-tattoo for myself. All you have to do is look at the quote I picked in my high school yearbook to know why. (No, I am not telling you what it was.) What I mean is, I'm phase oriented, and my tastes change. A lot sometimes.

But for the last year I've been wanting one. I guess there's been so much change, so many new permanent marks on me, that I feel like a little more won't matter much. I love Amanda Wachob's work. And rabbits haunt me a bit, like that Velveteen excerpt, and Hazel from Watership Down. Rabbits are quick, on alert. They are connected with the moon, and can be indicative of rebirth or resurrection.

I already have some tattoos. Little dots, from radiation, which I'd want to incorporate in some way. I'd like something that looks like it's taken from Beatrix Potter's sketchbook, like this:


Tuesday, November 5, 2013

The (un)Real World

Well, here I am, back in NJ after three beautiful weeks at a residency program. (The Atlantic Center for the Arts in New Smyrna Beach, Florida.) Back to the real world.

But as I move about here, I am struck over and over by the unreality of it all. Walking to get a blood draw, thinking about what the fuck to do about this reconstruction shit, I'm confronted by this:



At the eye doctor after work, my one appointment which should have nothing to do with the C word (the other one) the optometrist says, "the breast cancer was last year?" I smile and say yes, but obviously, no. No, it is now and it was yesterday, and it is in five minutes and five years, or fifty.

At night, on 14th street, a cello swells from underneath me. Then it is gone, then it is back again. I am walking over subway grates, and a subterranean cellist.

For three weeks, I didn't see a single doctor. A record, since diagnosis. I had a couple of anxiety attacks, certainly. But that's what feels real, not being in this soup of my actual life.

On the last day of the residency, I saw a gathering of manatees. I, and a few others from the residency, had assembled an unassuming bank near a playground to try to see them. It was the kind of place you'd have to know about to find. The kind of place without an address, just a "hang a right at the liquor store shaped like a sombrero" kind of thing. Someone told me it wasn't so exciting to see them, that they just look like rocks.

I could never see their whole bodies at once, but I loved them. Their peaceful presence, their quiet curiosity. And while they were mistaken for magical beings once (Columbus thought they were mermaids), when I saw them they were scarred and muddy and full of the murk of real life.




One showed me the pink scar on her back, and I felt like she was saying hello to me. I wanted to sit all day with them, but there was a schedule (promises, and miles to go, and all that).

There is something about my life that makes me think of fumbling around in the dark, in a room with other beings. We feeling around, everyone asking "Am I okay?" and then everyone answering, "You're okay." Am I okay, you're okay, am I okay, you're okay. You are okay.

I felt like she said it to me, when her scar was up above the water. And I believed her.

Wednesday, October 30, 2013

October is the wackest month


Well, we've nearly made it. The 30th day of Pinktober. I've been in a little bubble at an artists' colony in Florida for much of it, but made my way into civilization a couple of times, and holy fuckballs. Pink ribbon cupcakes. Pink ribbon golf. Even the newspaper was dyed pink.

The thing about this awareness stuff, is that I think we're pretty aware that breast cancer, you know, exists. We know that women get mammograms. And that's pretty much where the message stops most of the time.

What we aren't aware of, many of us, is the reality of this disease. We're aware of be-pinked triumph over death, forgetting that it's temporary (like, for all of us). Forgetting that nearly 40,000 American women a year die from this disease.

Look at Angelo Merendino's stunning photographs of his wife Jen.

We aren't aware of the insidious sexism inherent in so many pink ribbon campaigns. Save the Tatas? I'd rather we saved the women. And those guys with the motorboating...let's just say I'd like to see them try to motorboat me. I think they'd take one look and my radiation-burned, caved-in chest and run screaming from the building.

Check out PolicyMic's article, Why Breast Cancer Awareness Month is Actually a Huge Insult to Women.

We aren't aware of the creepy chemical/pharmaceutical game being played, in which companies make products that can cause cancer, and then turn around and sell you a treatment. I'm grateful to have these treatments, as they may have saved my life. But I'd also rather not have gotten cancer to begin with. We need SO MUCH MORE research into the environmental causes of cancer.

Read Breasts: A Natural and Unnatural History, and watch Pink Ribbons, Inc.



We're aware of breast cancer, as a thing, as a marketing campaign, but we're not aware of it as a reality. As an experience that takes over peoples' lives, as a disease that sometimes takes those lives outright. It's clear to me that the Pink Industrial Complex isn't interested in this part of the story, so it is up to us, as individuals, to make it known. I posted the other day a quote from Audre Lorde, but I think it bears repeating: "Silence has never brought us anything of worth."





Tuesday, October 22, 2013

Not embarazada

 In high school Spanish, our teacher often talked about the dangers of Spanglish (ie making up words you don't know by adding Spanish suffix to an English word.) She told a story about a young woman at dinner with her future in-laws, and telling an embarrassing story. When she got to the part where she wanted to say "I was so embarrassed!" she used the word embarazada. Which actually means "pregnant." Oh snap! That story probably wasn't true, in retrospect, but I always liked it.

Because who doesn't love an embarrassing story? As long as it's about someone else. you're in luck, because I compiled a few for my post over at ABC News, about the Traumarama moments of breast cancer. Check it out here.

Warning: there is a giant picture of my face.

Sunday, October 20, 2013

Monday, October 14, 2013

A good day for flying

It was still dark when my Florida-bound plane took off this morning. This is my 5th plane trip in the last year and a half. I've had five surgeries in that time, too.

Florida is where my surgeon said to go when I was sick of doctors.

But that's not why I got on a plane this morning. I'm headed to a writing residency in New Smyrna Beach. Three weeks of writing, and I assume, sitting on the beach. I brought my bathing suit, though wearing it would be a feat of bravery I might not be quite up to.

Last night, while looking for an errant pair of flip flops in my closet, I came upon a little trunk of mementos. Some tiny art projects and letters, but mostly photos. None were from later than 2004. The ones that struck me most were from my high school graduation party.

I looked happy. More than that, I looked relieved. High school was tough for me, like it is for most people I think. I had brief moments of having friends, but those relationships often flamed out, and often I was left without a place to sit in the cafeteria. But when the photo was taken, I had graduated, and that monster had loosed its grip. I was ready to move on to exciting unknown things at college.

It was just over eleven years ago. Before  iPhones and social media and What Does the Fox Say? (We did have Star Wars Kid, however.)

Was there anyway I could have known then, what the next ten years would bring? Of course not. And as I sit here on this Airbus, (apparently the Mickey Mouse Express, based on the number of small children on board) I feel an affinity for my 18-year-old self. We have made it through the toughest thing in our lives so far. We are unaware of the beauty and love, and the shit, yet to come.


Wednesday, October 9, 2013

Today I learned

That I am "hyper-mobile."

hyper -prefix
1. (in medicine) denoting an abnormal excess
 
mobile -adj.
1. capable of moving or being moved readily.
2. quickly responding to impulses, emotions, etc., as the mind. 
 

It was said in reference to my joints, but it has applications elsewhere, I think.
 
 

Tuesday, October 8, 2013

Some threads


When I got home tonight, there was this giant box waiting for me. 


It was a box of swag from the awesome tshirt (and other stuff too) retailer Threadless! They also made this really sweet card. Tears!!

I've been a fan of Threadless for a long time, and via many christmas presents, I've  converted my family as well. My sister Lizzie once seriously considered a particular college based purely on its proximity to their headquarters. (Future engineer of America, guys.)

This was so super sweet of them to send me all this great stuff. I love everything, but most importantly, the cats approve.

Toastie enjoying the cool geometric throw blanket.

Lydia making sure all is in order with the box.

Readers, it was a rough day. My plan when I came home was to flop into bed with a bag of cookies. Then I saw the box. It didn't even matter what was inside...it just made me feel nice. Though I may still crawl into bed with my cookies, I'll definitely be dressed better.

Saturday, October 5, 2013

Um, yeah.


Little red dots

WARNING BREAKING BAD SPOILERS AHEAD HOW HAVE YOU NOT WATCHED THE FINALE YET OH MY GOD

Well, it's been some week. I posted a video I thought a few dozen people might see, and at last count,  it's over 300,000. I am stunned by the response the video has gotten. Thank you so much for all the support and well wishes. I'm trying to work my way through and respond to everyone. Thank you everyone for reaching out.

Part of what many have asked me after watching the video is what my status is. Am I cured? Am I in remission? Am I done with all of this?

The answer that they want, understandably, is yes. They want to hear that I'm completely healed and moving on with my life. But it's more complicated than that.

In the finale of Breaking Bad (SPOILERS YOU HAVE BEEN SO SO WARNED) there's a scene in which Walt visits Elliott and Gretchen, his very successful former business partners, to convince them to funnel the money Walt has earned cooking meth to his son, Walter, Jr. (aka Flynn...that's a whole other thing) after Walt dies. They agree, but to give himself a guarantee, he employs a little bit a terrorism, seen here.





Even after he's gone, his agents of destruction still lurk. They are unseen until it is too late. It doesn't matter, of course, if they are real snipers or just Badger and Skinny Pete with laser pointers. The threat is there, and the terror is there. Though Gretchen and Elliot have survived Walt, they know they won't be so lucky with the snipers.

I feel the same about breast cancer. Though the main players, the tumors in my breast, are dead and far away in a freezer somewhere, there is always the possibility that more are lurking, just waiting to reveal themselves. Just waiting. So sometimes something happens, an new pain, or odd symptom, and the terror rushes in. Is this it? Is this the moment? The little undertow of sadness and fear that informs my entire life becomes huge, pulling me deep under. (Did I mention I don't know how to swim?)

I'm superstitious about saying that I'm doing well, when it still feels like I'm in someone's cross-hairs.

I don't think it's a stretch to see Walt as the embodiment of cancer, with cancer's cellular action a corollary for his own activity. Think of Walt as a cell. A variable is introduced, in his case, a cancer diagnosis; in the cell's case, an environmental toxin perhaps. In the first episode, we see Walt as having the opportunity to be a vigilante hero, restoring order to society. Instead, he goes the opposite way, and decides to add chaos and destruction. Cells have the same potentiality. Some go good, others break bad, by growing in ordered patterns, or by growing out of control and becoming tumors. Some people, and some cells, like to go down in flames, and take a lot of others with them.

I have a lot of love for the antihero. I will argue for hours against Tony S. being a sociopath. Of all of these guys, like Stringer Bell, or Tony Soprano, the only one I'm afraid of is Walter White.

Tuesday, October 1, 2013

New friend



Yup, that's a breast implant. Rather dreamy looking in this photo, don't you think?

Okay, some back story. I've been having an ongoing problem with a seroma (a collection of serous fluid) post surgery. And by that I mean, post mastectomy. As in, a year ago. Anyway, this seroma is the reason I've had to have drains for so long in the past. A seroma forms when there's an empty space in the body. The body does not like empty space so it fills it up with this fluid. (Is the human body a hoarder? It's not for me to say.)

Since the removal of my surgical drain last month, I've been having to go every week to the surgeon's office to have this fluid aspirated. I've tried basically everything to make this thing go away. Every supplement, nutritional thing, every pressure bandage. I tried acupuncture. Nothing worked.

After unveiling my latest seroma squelching scheme, which involved Crayola Model Magic, he suggested we try using a sample implant to fill the void, and just smoosh it down with a sports bra. So he sent me on my way with this little puppy, a 320 cc silicone implant.

It's an odd little thing. I passed it around when I got back to work, and freaked out my coworker when I gave it a tender smack, like the way I pat my dog on the rump.

It's sitting on my kitchen table now. I feel compelled to name it. Maybe because its saline cousin is currently occupying the space under my right pec muscle.

This implant is a medical device, I know. I feel like that should make me squeamish. But, I don't know, I feel a lot of affection for it. It's squishy, and fun to play with. And if I hold it just right, it reminds me of a crystal ball.

ETA: The silicon friend is in place. Very different from saline! Anyone out there have a real boob, so I can conduct a side-by-side squeeze comparison of real vs. saline vs. silicone? KTHXBYE

Sunday, September 29, 2013

The last year, in one minute


Last September, when I started chemo, I also started taking a picture of myself every week. I was originally going to do this for the 12 weeks of Taxol. My Herceptin treatment (not technically chemo, but chemo-ish) was to last one year, so when Taxol ended I decided to keep going, and chronicle the full 52 weeks -- September 21, 2012 to September 21, 2013. That might actually be 53 weeks. Whatever. I went 21 to 21.

It's odd to look at this. I normally don't like looking at photos of myself. Um, particularly when I look like shit. But I feel, I don't know, separate from this person somehow, even though the last photos are from just a few days ago. I feel like the girl in the photos made it through pretty unscathed, though the look on her face sometimes makes me sad. A lot of people had it a lot worse. (I sort of hate it when other people say that to me, that "it could be worse," thing. I know they're trying to be comforting. But you know what? It could always be worse. My prognosis could be worse. I could have had to do harsher chemo. I could be going bankrupt. My dog could have run away. So yes, it could always be worse. But shit could be a lot better, too.)

I'm still not completely sure why I took these photos. At first it had to do with documenting the hair saga. But it wound up becoming about something else, too. The photos became hash marks scratched on the wall, marking time spent inhabiting the world of this disease. Every time I set up the tripod was another week down. Or was it another week lost?

Saturday, September 28, 2013

Chemozombie


Since coming up on my chemo-versary last week, I've been reflecting on the experience. Most of my thoughts are of the "What the fuck?!' variety. As in, what the fuck, I went to work? What the fuck, I rode the subway? What the fuck, I didn't demand breakfast in bed and carpet of rose petals?!?

I stayed pretty normal throughout chemo. I clung to normal. So I rode the PATH and subway (even home from chemo sometimes... Yeesh). I went out, I wore perfume. I worked on a fashion shoot, despite my dip into the world of unisex clothing. I didn't buy a particular pair of shoes that were too expensive, even though I had the world's best excuse. I kept on doing all that old Emily stuff, so that I didn't die along with my cancer cells (and hair follicles).

The treatment that kills your cancer can also kill you. Because cancer is not a bacteria or a fungus. It is born of us. So any assault on a tumor is also an assault on the body as a whole. Parts of you are dead or dying all the time.

So there's an undead thing going on. A chemozombie. You're pumped full of poison. You should probably be dead, but you're walking around. Your brain's fried, so you're about as dumb as a real zombie. Your joints are stiff from chemopause and taxol and herceptin, so you kind of walk like this:


Hook 'em up to IV stands and these guys can be seen in infusion suites across the nation.

Sunday, September 22, 2013

Overcome all darkness

It wouldn't be restorative yoga if I didn't cry.

I went back to yoga tonight for the first time in months. Restorative is different from regular yoga because it's very slow, and designed for people with injuries. We do only 5 or so poses in two hours, and there are loads of props to make sure nothing gets injured.

As I have posted about before, it's always an emotional rollercoaster. Being along with yourself, with your body, is a pretty big deal. Certain stretches can make you feel extremes of emotion.  And the teacher is wonderful at discussing the philosophy.

Tonight she talked about what she likes most about restorative. She said, roughly, that she liked the act of setting up the props as a symbol for setting up a place to heal. You get into the poses, and you don't have to be actively engaging all the time. The props help you in that way. The point of restorative, she says, is to be able to receive. Being open to receive what others, or the universe, offers you for healing.

This is the prayer we say at the end:

May the entire universe be filled with peace and joy, love and light. May the light of truth overcome all darkness. Victory to that light.

Friday, September 20, 2013

Overheard in NY: Cancer edition

Phlebotomist, drawing blood for visit with my onco: Getting treatment today?

Me: No! That's the first time I've said that in a year.


They always ask, when doing blood draws at the cancer center, if you're having treatment. This was my first blood draw since finishing Herceptin last month. 

Keep it together, Priscilla.

Monday, September 9, 2013

Just girls

As we pull around to the fall, to when I started chemo and started blogging, I have been thinking a lot about the story of this. The arc of it. Life doesn't occur in the neat arc format you learn in fiction class -- a steady plodding of desires and obstacles, leading to a crisis point, and finally softly landing in a denouement. In fact, this year has felt more like a series of crisis points, one after the other, with no free moments for taking stock.

The pink things have started appearing in the windows of pharmacies and grocery stores already. Pink arrives just after back-to-school is marked down, and as orange and black begin to haunt the aisles. It's a peculiar brand of insult to be hit up for cash by Komen as you buy cream to rub on your mastectomy scars. Because I'm over a year out from diagnosis, and this isn't close to over. The narrative they promise, the arbiters of pink, is one of strength and triumph. Cancer is a purifying fire, they tell you, and when we emerge (and we all do emerge) we are better, stronger, faster than before. We run races to prove it. We raise cash. We look pretty.

That's the story they tell, and perhaps it's to get you to buy more pink bags of chips or whatever the fuck. Or perhaps it's because the true story is just too sad and too scary, to gruesome, to stomach.

The truth is not that "We're all going to be okay!" as someone said in my support group once. The truth is not those sanitized sunny smiling women in the Komen/Estee Lauder/Revlon ads. You know the ones...the thought bubble above their heads practically reads, "I've got a life-threatening illness -- and doesn't it make my skin glow!"

The truth is that this fire destroys more than it cleanses, and rising from the ash is just for pheonixes and Daenerys Targaryen. The life lesson you learn isn't "Don't sweat the small stuff!" or "Don't move my cheese!" or whatever. It's "Don't get fucking cancer!"

So what's my arc here? Impossible to say. An arc sort of implies an end, doesn't it? And this isn't over, and it won't be over for a very long time. Maybe not ever, until I die. You don't ever get to say you're cured of this disease. You're considered cured if you live your full expected lifespan, and die from something unrelated to cancer or it's treatment.

Ugh, I'm sorry, dear reader. I know this is a downer. It just makes me so angry that the company that makes Tamoxifen also makes carcinogenic pesticides (and the list goes on and on). And instead of screaming about it and demanding that they stop poisoning us, we're expected to wear pink and jog and talk about bravery. Because we're girls, I guess. And that's what we're supposed to do.


Tuesday, September 3, 2013

Overheard in NY: Internal Monologue Edition

Possibly homeless man on 18th St, pointing at my chest: Great. Tits.
Me: Joke's on you! One of these bitches is plastic, the other is wool.

It's called l'esprit de l'escalier, mofos.

Friday, August 23, 2013

Infusion complete

My chemo jersey. Not pictured: crocheted prosthetic boob.

Today was my last herceptin treatment. (If you're curious, this is a pretty good explanation of the drug and how it works...though you still may need multiple advanced degrees to really understand it.)


My original plan with this blog was to close up shop once I finished treatment. Now, with restarting reconstruction (and a possible clinical trial for an anti-cancer vaccine) on the horizon, I think I'm going to keep going. I also don't feel quite ready to give it up. This experience isn't over for me, even though I have hair, and have gotten my last drop of drugs, and zap of radiation. Most people seem to think that since I don't look all that cancer-y anymore, I must be feeling back to normal. Yeah no.

In the chair.

I said to my therapist this week that I felt like I'm expected to just go back and be normal now, which feels impossible. Cancer has been my identity for over a year. It took over everything in this sick way, and now I don't know how to do anything else. I had stopped reading all my old blogs in favor of cancer research articles and prescription drug labels. And now I don't really feel like I fit with all my old interests. Don't get me wrong, I am really fucking sick of cancer. But there's a little Stockholm Syndrome or something going on here.  

While on my way to herceptin today, last year's song of the summer popped up on my ipod. When I was in Rome (before all this happened) that song was everywhere, and so I associate it with this period of innocence, or naivete, or something like that. It's like, when I came come from Rome, I was like,"I'm NEVER going back there," because I felt like I got the whole experience in one go, and most Romans treated me pretty badly. But now, of course, there's this nostalgia for it, for that moment before the fall. Wishing I could be that girl again. This song brought up that feeling, and how it seems like I've broken with a part of myself that I don't think will ever come back.

The way home. No seat on the PATH, natch.

So there's an odd feeling that comes with finishing treatment. I'm glad for the reprieve and that I get a chance to heal. I'm scared that I won't be being watched anymore, and won't be getting any cancer killing drugs. But I'm also scared because it's like, "What the FUCK am I supposed to do now?" Throughout the experience there's a feeling of just doing whatever you have to do to get through the day. If that means you eat chips and watch Orange is the New Black all day, that's fine. (I have definitely done that. Maybe that's obvious...?) But now, I have to leave the holding pattern and actually go somewhere. Otherwise, what was all this treatment for?

Self portrait?

Someone drew a picture of me on top of an image of the 9/11 memorial. Maybe this scar/slash thing should be my new tag. 

HERCEPTUNES

The final installment.


Tuesday, August 20, 2013

The moon in cancer


Tonight there will be a blue moon.

A week and a half ago I had a surgery, my fifth in a year, to remove my left breast implant. My radiated skin was simply not healing while being stretched over the implant, so we took it out and now there's nothing. When I place my hand over the spot I can feel my heartbeat, for the first time since I was about 11.

Tomorrow my surgeon will remove the stitches from this last procedure, and there will be nothing holding me together.

Friday will be my last dose of Herceptin. And then nothing, at least for a while.

No doctors, no drugs, no blood tests. No one squeezing, measuring, frowning, or patting my shoulder. Nothing.

A blue moon is when there are two full moons in a period of 30 days. Or more accurately, when there are four in a season. It's when there's extra. It's when, arguably, there is more full moon. More moonlight. Less darkness. Less nothing in the world.

But now, more for me.


Wednesday, August 14, 2013

Overheard in NY: Cancer edition

Matt: Nice outfit (referring to my post-surgery bathrobe).
Me: You like the depressed housewife look?
Matt: Yeah, I like feeling like I've crushed your dreams.

Monday, August 12, 2013

Buried treasures

A stowaway from surgery three days ago. #cancerfriends


Hiding out

I just watched Pink Ribbons, Inc. which was amazing and infuriating. I just read this Buzzfeed article about all the carcinogens that we allow in the US that are banned elsewhere, which was scary and crushing. The I saw this (incredibly biased) article about radioactive water from Fukushima, which was really scary.


Friday, August 9, 2013

New for Summer 2013



Gown by Balenciaga, bonnet by Marchesa, bracelets by Cartier. 

I think.

Saturday, August 3, 2013

Bad dates

One year ago today, I wrote a little in a journal, but what poured out was so dark and sad that I had to put it away. We're not doing this, I said to myself.

Because there was a definite "we." I felt strangely not alone in the days following the mastectomy. Yes, I was surrounded by my family. But there was something someone closer. Some people would probably say that it felt like the presence of god or an angel. But I think it was that I was occupied by two selves. The old me, tidying things up, leaving things like lists of instructions and passwords for the new me. The old me packing up her things, donning some kind of pert hat, and taking a last long look around before closing the door. The two mes, one going, one coming. I wrote in my journal about bleeding from many orifices (I somewhat cruelly got my period the day after my mastectomy). A shedding of the old, a purging.

The idea of a doubling or twinning of a person gets tossed around a lot in English classes. I guess it's related to the idea of the foil. Was one of my selves a foil for the other? One good, one bad, to be reductive? Or was it a tag teaming of consciousness, or some evidence of alternate universes? Over the past year I sometimes succumbed to torturing myself with the ever present What if? What if this didn't happen to me - what would I be doing? Dates that I had planned to do things, finish my novel, apply for fellowships, pass me by with little fanfare. I wonder about an alternate me somewhere, accomplishing everything on time. I have, several times, been reminded of a passage from Tess of the D'Urbervilles:

"She philosophically noted dates as they came past in the revolution of the year; the disastrous night of her undoing at Trantridge with its dark background of The Chase; also the dates of the baby's birth and death; also her own birthday; and every other day individualized by incidents in which she had taken some share. She suddenly thought one afternoon, when looking in the glass at her fairness, that there was yet another date, of greater importance to her than those; that of her own death, when all these charms would had disappeared; a day which lay sly and unseen among all the other days of the year, giving no sign or sound when she annually passed over it; but not the less surely there. When was it? Why did she not feel the chill of each yearly encounter with such a cold relation? "

These events make echoes, bouncing back and forth over the years. My Christmas freak-out four years after Matt's diagnosis can attest to that. But where is the warning shot? The creak on the staircase that tells you that you're not alone in the house? There isn't one, most times. And would we even want it?

I woke up today filled with dread. It's been one year, I thought, since the mastectomy. I spent the morning feeling nervous and snappish, and looking in the mirror, and feeling sad for my lost self. I looked for a photo that Matt took of me in the hospital. The photo, which I distinctly remember him taking after I moved from recovery to my room, was dated August 2, 2012. Not August 3. Yesterday. Sure there was something wrong with his phone, I checked my calendar. Thursday, August 2 contained the word "Surgery," neatly printed with a felt tipped pen. Still not convinced, I checked my email for references, and found, again and again, that the anniversary was yesterday.

A day that passed by, with little fanfare.

Saturday, July 27, 2013

I don't know what to call my un-breasts!

Right now I'm reading How to Be a Woman by Caitlin Moran. It's a completely delicious book. For some reason Vanity Fair called it "the British version of Bossypants" which is not true nod kind of a stupid thing to say. But for however un-like Bossypants it is, it's great. Case in point: there is a chapter called "I Don't Know What to Call My Breasts!" (The chapter headings have this swoopy 70's sex ed pamphlet font that I'm swooning over.)

In this section, she goes through the list of terms for breasts and dismisses each for this or that reason. Here are a couple I like:

"'Breasts' are bad news. Much like vaginas, breasts exist to be examined by doctors and get cancer..." Ah, so true. To bad it's not called titty cancer. That would be so much more manageable, wouldn't it? Which leads into:

"'Tits' seems nicely down to earth for day-to-day use -- "Give me a Kit-Kat, I've just banged my tit on the door" -- but struggles to make a satisfactory transition to nighttime use, where it seems a little brusque." Only a Brit would worry about seeming brusque while referring to an erogenous zone.

Of course, she's totally right. There's no great word for the mammaries. Jugs, tatas, bazongas...there's no right way to go. Someone I went to school with was once discouraged from using the word 'breasts' in a poetry class, and was offered the phrase 'forward lumps' instead. (???)

So. If we've got no proper name for these, um, forward lumps, then there's sure as hell no good term for the sacks of saline I've got sewn into my chest. "Foobs" (fake boobs) is popular in the BC world, but it lacks a certain....sophistication, maybe? Boobs are funny, not smart or sexy. Foobs are funny in a painful way, like bad magicians or anything Ricky Gervais has ever made.


I suppose you could continue the portmanteau method, ending up with freasts, fatas, and fits. Fits (Fitz?) makes me think of a large German man.

I propose something new and original. Something with the melodious beauty of "cellar door." Something that communicates a rebirth. Something with a hint of sadness. Something with a silent "b."

Get busy, you wordsmiths.

Tuesday, July 23, 2013

The last year, in emoji

This ought to clear things up. Any questions about the last year will be answered with more emoji.

Friday, July 12, 2013

Okay/Not Okay

Okay, so we're getting into cancer anniversary territory. A year ago this week was when I first noticed the odd symptom that drew me into this world. Not a lump, but a spot of blood. And the rest, they say, is fucking history.

Coming home from herceptin today I was transported back to those increasingly worrisome days, focusing in on the day I knew something was really wrong. I had gotten a mammogram, and the tech showed me the spots that concerned her. Calcifications. "They're so tiny," I said. As if tiny meant harmless. Like snowflakes dusted across the screen. She said she would get the doctor to see what she thought.

The tinies


More mammograms, another ultrasound. Then needle biopsies of my breast and lymph node. At one point, in the dark and womb-like ultrasound room, I told the technician about Matt, and how all these activities reminded me of what happened to him. I said I was scared. Or cried it. She told me that she had had thyroid cancer in her early 30's. Now she is healthy with a five year old son. "Even if this is bad," she said, "you will be okay."

She knew of course, as did the mammogram tech, the residents that routinely poked in, and the radiologist. While the doctor performed the biopsy, the ultrasound technician squeezed my shaking hands and willed me to be still. Afterwards, the doctor showed me the mammogram images again, and explained again what concerned her. (I would later learn that the images on my mammogram were rated "BIRADS 4 - Suspicious abnormality.") She wrote down her cell phone number on a scrap of paper. "Call me anytime with questions."

The next few weeks were a blur of terror and kindnesses. The squeezed in appointments, the requirements waived, the soft voices. Wondering if I might die. My GP calling from Turks and Caicos when she heard the news. My surgeon holding my hand as I slipped under the spell of the anesthesiologist.

Over the last year the fear has waned, but the kindness has not. My oncologist still makes nipple jokes and tosses "Love ya, Em!" over her shoulder. My radiation onc tells me how tough I am, and the techs are easy and regular, and swapping cocktail recipes with me. The chemo nurses compliment my hair, and tell me not to lose any weight.

Last week, when the plastic surgeon told me to go to the ER for yet another surgery, I broke my no-crying-at-the-doctor streak. (The last time had been at my diagnosis.) After a minute of sniffling, I told him I was okay.

"No, don't be okay! I'm not okay. This is not okay. This sucks."

Ah, yes. So it does.

Friday, July 5, 2013

Anyone?




Job Opportunity
Full time temporary position
Seeking assistant with expertise in medical billing, first aid. Experience as a medical test subject a plus. Duties include attending all appointments, receiving all medications, and undergoing all procedures in my stead.
No vacation time.


Wednesday, July 3, 2013

HERCEPTUNES


Last year: revising novel in Rome
This year: revising mastectomy scars in New York

Yesterday: admitted to writing residency
Today: admitted to O.R.


Tuesday, July 2, 2013

Get Frumpy!

Come on gals, everyone is doing it! Ditch your sexy heels, throw out your lacy lingerie. We're all about mastectomy bras and orthotics round here.

Things you need for ultimate frumpitude:

- Lopsided (still, forfuck'ssake) boobs
- JP drain (outline should be visible through shirt)
- Extra 10 pounds (preferably chemo weight mixed with general laziness)
- Extremely baggy shirts that try and fail to disguise the above
- Old lady hair
- Sparse eyebrows

Seriously. I went shopping for clothes today...holy fuckballs. I haven't bought clothing in a really long time. With the exception of a couple of half priced sweaters I bought on Black Friday, I haven't spent any money on clothes since last August. It was after my mastectomy, and I still had drains. Every morning getting dressed was this really depressing game of "Which of these shirts looks hideous on you now?" The answer was all of them. So I said to myself, "Get thee to The Gap," and I bought four dark colored shirts in extra large. I also bought some things called bralets, because the name tickled me and I had never been able to wear one of those before. When I got home I packed away all my existing clothes except for a few pairs of pants. I wore this very limited wardrobe for almost an entire year. (To be completely honest, there were a couple of other button down shirts that I had previously bought for post-mastectomy life which I wore when I was unable to lift my arms above my head.)

Mercifully, one of the cats or the roomba broke our full length mirror several months ago, so for the most part I have had no idea what I've looked like.

As the hottest part of the summer begins, in NYC, in my office with no air conditioning, I've had to rethink this four shirts thing. (Actually I'm down to two shirts, since two of the original ones were long sleeved.) I looked through old stuff, and found one tank top baggy enough to hide under. I had a Gap gift card so I got a couple more XL tees without trying them on. Then I realized that I had entered the Frump Zone.

When my mom was a kid, she and her friend did this anthropological study of them moms they knew, breaking them into two categories: Hotsy Totsy Moms, and Frump Moms. Hotsy Totsy Moms wore makeup, high heels, and fancy hairstyles. Frump Moms, like my grandma according to my mom, never wore makeup, got perms so they didn't have to do their hair, and wore comfortable if ugly shoes. Check check check.

I went to the mall to see if I could improve the situation. In attempt to recapture someone else's youth, I guess, I went to Forever 21, a place where 17 year olds shop with the dream of someday wishing they were younger. I put aside my reservations aboutt heir creepy Christian agenda, and took a pile of polyblend into the dressing room. Oof. The oddly cut clothes work for skinny teenagers, but oddly lump 29 year olds, stay far away.

I should say now that, compounding my weird shape, is that I don't want to spend like ANY money. What's a girl to do?

Go to H&M, that's what.

Monday, June 24, 2013

Such small portions

When you get a cancer diagnosis, you start thinking about death. A lot.

I'm not planning on dying any time soon, and I kind of refuse to die from cancer, but it's out there. What's the old joke? Something about life, and how no one gets out alive.

When you get a cancer diagnosis, people sometimes talk to you about death. Awkwardly.

They say things like, "You never know, I could get hit by a bus tomorrow," and other such nonsense. I want to say back, yes, but I doubt you will spend the next year + of your life trying to dodge said bus. And how many people actually get hit by buses anyway? Something like 4,000 pedestrians get hit and killed by some kind of motor vehicle each year in the U.S. Cancer racks up half a million. Um.

Last week, there was an article in the times about something called the Death Cafe, which in the spirit of early 20h century salons, involves the discussing beliefs and theories about death and dying, with ample servings of coffee cake.

This weekend, I attended a talk a woman gave about her research into a phenomenon called Radical Remission. It's a fascinating topic that I won't go into in depth here, but she examined people whose cancer disappeared without the presence of Western medicine, and what they did to try to heal. She talked about lots of alternative therapies, but one thing stood out to me. She said that something all the patients deemed as vital to their recovery was a desire to live. It seems completely obvious. But push the thought a little farther -- it was a desire to live, not a fear of death. There's a sort of hairline type distinction there. It was, for these patients, about a reason to be here, not a reason not to be somewhere else.