Friday, April 18, 2014

I sing the body defective

April is National Poetry Month. And, perhaps because of that but probably not, I was recently looking for answers in poetry. (I'm a firm believer in text-as-medicine.) I mumbled Prufrock to myself on the train. But mostly I turned to Whitman, that celebrator of the body, that open modern mind, whose words I have found nourishing so many times. (Like, want to feel kind of okay about death? Here you go.)






But where I thought I'd find comfort, I found more alienation.


1

I SING the Body electric;
The armies of those I love engirth me, and I engirth them;
They will not let me off till I go with them, respond to them,
And discorrupt them, and charge them full with the charge of the Soul.
  
Was it doubted that those who corrupt their own bodies conceal themselves;         5
And if those who defile the living are as bad as they who defile the dead?
And if the body does not do as much as the Soul?
And if the body were not the Soul, what is the Soul?




He writes about the fool who corrupts her body, and I feel that fool is me. Not by choice, obviously -- or maybe, obviously yes by choice, by choosing to live here among the plastics and the chromium and the fumes, all of which corrupted my cells, and with the help of faulty genes and errant mouse-carried viruses, made a place for wrong to grow. 


And then by necessity, I corrupted my body further with medication, a careful dose of killing stuff.


He writes of the body's connection to the soul -- but what happens when part of the body is gone? Is there a piece of the soul gone too? Does it occupy the air around my tissues in a freezer somewhere? Am I less eternal without these parts?


Whitman was no stranger to amputation. A medic in the Civil War, he wrote about the gruesome sight of cut off limbs, piled up near a tree. In "The Wound Dresser" he writes of a young soldier, "His eyes are closed, his face is pale, he dares not look on the bloody stump,/And has not yet look’d on it."

But I have. I have not lost a limb, but that doesn't mean I haven't lost a part. A piece. I am looking now. I think. It's hard to know, impossible to see precisely. It's always a reflection, or through the eye of a camera, that I see the entirety of the field. But it has always been this way with the body, I guess. What did we do before there were mirrors?

I'm angry at Walt Whitman.

He writes of existing beyond death, of defying time through the pages of his book. I feel like reaching in through the spaces between the lines and grabbing him by his open collar and pulling him close to my face and saying,  

Why have you left me here alone?
























Tuesday, April 15, 2014

The new girl


The other day, I was in therapy, discussing this issue of the body. (Side note, every time I say the term "the body" I think of this art history professor I had in college, who in discussions would always say it like this: the bauuuuddddeee. At least five syllables.)

I was talking about the different things I was planning to do (almost none of which have I actually done yet, btw). And then just expressed my frustration at the fact that at 28, I had finally worked out a lot of the adolescent body issues.

"It was the best I felt about my body since I was like 11," I said.

"What happened when you were 11?" she asked.

And I smiled, and said, "I got boobs."

Perhaps this was obvious to everyone except me, but I had issues with this, let's call it a region, for a while. I developed early, and noticeably, and I wasn't really into it. In 5th grade I was still collecting proofs of purchase from my horse figurines to send in for a limited edition Grand Champion.


I had crushes and stuff, too, but I was happy to keep them firmly planted outside of reality. When, the next year, the boys in my class ranked all the girls by breast size, assigning each one a corresponding fruit (mine were apples) I felt pretty strange. I was stuck in this weird world, of still trying to be a kid and occasionally wearing the matchy kiddish outfits my mom would buy, and just trying to hide what was happening -- usually by wearing my brother's old tshirts and jeans. (Retreating to the arms of menswear -- sound familiar?)

By 14, I was more ready for things, but still not totally. I was tall and wearing a d cup by then, and I guess I looked a lot older than I was. But even still, far too young for the older men who would chat me up while I was reading Seventeen magazine. I felt scared and ashamed.

But then I guess I learned the other side of it, or I learned that it was what boys liked. (My middle school boyfriend was mostly interested in pawing at my chest in movie theaters.)

So looking good meant showing a bit of tit, though I was never comfortable with very much.

(When I was trying on wedding dresses, I struggled with the several inches of cleavage that seemed unavoidable. When I balked, the saleswoman suggested something called "a modesty panel." Oy.)

So scared and ashamed. But also trying to understand the power of that body part in some what.



Anyway, after about 15 years I sorted most of it out for myself. At least to the point where the comfort outweighed the shame.  I still hated that I couldn't sleep on my stomach, and the multiple sports bras I had to wear when I went jogging, and that I couldn't rely on a button down oxford to keep shit PG. But it was okay.

Then cancer. And damn.

When I posted before about the struggles I was having with body image, I was sad to get several comments from other women, commiserating, and sharing their own feelings. (There's a weird sad/glad feeling, when you meet someone dealing with the same thing as you. Relieved that I'm not alone, but sad that there are others dealing with the bullshit.)

It also made me angry. I am beginning to realize that the problem is incredibly common -- yet very little discussed. "Problems with body image" usually ends of far down on a bulleted list of emotional side effects of breast cancer, with no further explanation or resources offered.



I feel like we're just left to fend for ourselves here. Post-treatment support is fairly scant across the board, I guess, but still.

In a word, blerg.


Friday, April 4, 2014

Young Adult Cancer Awareness Week

I've been remiss the last few days in pointing out that it's Young Adult Cancer Awareness week. So. Now you know.

I've been thinking about the other young adult in my life. Matt. Some of you know, but perhaps many of you don't, that he also had cancer. He was diagnosed with non Hodgkin Lymphoma in 2008. We were living together, but not married yet. I wrote a weird little essay, Love Letters Written to You in Waiting Rooms, when it was happening.

Yesterday, I gave a talk at a high school about my cancer experiences. At the end, one of the kids asked how Matt reacted when I was diagnosed. It's hard to parse out -- I don't think of us as having had separate reactions. I feel like, in those moments of diagnosis, but especially with mine, we were, I don't know, fused together in some way. I can only remember how we felt.

And our feeling was basically this:


Tuesday, April 1, 2014

My body, my self

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

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

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

If only they knew what I really looked like.

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

Damaged, deformed. Repulsive. Monstrous even sometimes.

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

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

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

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

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

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

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

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

Friday, March 28, 2014

Memory, a ghost

Sometimes, it feels like there are memories that just have to out.

I was in the supermarket the other ay, and there was this huge display of giant, 1.5 liter Evian bottles. They were on sale for $2.25 each. A good price, I thought as I walked by. Then I smiled for some reason, and then I thought of chemo, and my poor sad little veins. And as I walked through the meat department, I was back there, back in the chemo chair. It was more visceral a feeling than even being back in that same building, or smelling alcohol wipes. That water, and my two-a-day, then three-a-day, ritual. It was a spell I performed to ward off pain and multiple jabs from needles.  When I was relating this to my therapist today, I started crying. Crying! Over bottled water.

The Evian came on the heels of a hard, weird week. Saturday night I came down with some kind of horrifying stomach thing. The scene was reminiscent of the Exorcist. And more terribly, chemo. Though I never actually threw up during chemo (that pleasure was usually saved for post op car rides), the weakness, the nausea, the sensitivity to smells I experienced were like a giant neon sign flashing TAXOL inches from my window.




I became filled with fears -- what if this wasn't a virus, but a side effect from the clinical trial? What was I thinking, taking a drug that was untested? I must be insane. Or: what if it is a virus, or other pathogen, and it does such a number on my immune system that I turn septic, or a dormant bacteria on my remaining breast implant comes to life, and I have to be hospitalized and pumped full of antibiotics? (In my defense, this recently happened to a friend of mine.) Or...or...or.... I sobbed to my confounded husband. Luckily Pancho had his shit together and calmed me down.

It feels something like being covered in a thick, many layered skin that's getting peeled away. As if, when I was diagnosed, I was dipped in many layers of protective paraffin wax. That's where my relative calm came from during treatment. It's how I wasn't crying and panicking constantly. All the events of the last almost two years are like barbs tossed at my translucent figure. Some only nicked the surface, some penetrated deeper. Some went all the way to to my skin, all the way to my bone.

Now as I start moving again that wax is melting, and as it does, barbs get revealed, and I feel them like I never felt them while it was happening.

Two days after my stomach episode, Matt came down with a cold and laryngitis. (Everyone in the world should probably avoid horrifying Petri dish of an apartment.) He couldn't speak above a whisper. "This reminds me so much of radiation," he said. And as I sat with him,  I wondered about the depth of that barb, and how many layers were left.

Wednesday, March 19, 2014

Cancer Fairy answers your questions

Q: How do you stay positive?? I'd be a mess all the time. How do you just live life daily? 

A: I remember reading an article when I was a senior in college that featured a young woman with cervical cancer, who ultimately died from the disease. The article was written lovingly by a close friend. I still remember the picture of the girl lying in a hospital bed, wearing a "Cancer sucks," tshirt, and sticking out her bottom lip.

I could never go through something like that, something so hard and scary and sad. I couldn't handle itThat's what I thought then, at 21. Little did I know that three years later my boyfriend would be diagnosed with cancer. And four years after that, I would too.

Reader, I handled it.

One thing I've learned is that all of us, all us living things, have inner reserves of unknown strength and depth. 

Part of it is the fact that anything can become normal if you do it enough. Chemo, surgeries, whatever. (And I mean, I love being a regular, but when they start recognizing you at the ER it's a problem.)

There's another part too. Think of it as an inner Brit just taking over. Your run of the mill, stiff upper lip, Keep Calm, Carry On dame in a mack. (Helen Mirren or Judi Dench? I'll leave that to you.) In other words, you just get on with it. I never had a moment where I wondered if I could handle was being thrown at me. There was no choice. It was just my life now. 

Did I freak out/do I still freak out sometimes? Hell yes. But not like I imagined I would. I didn't run around every second during chemo thinking about the fact that I was bald and looked like a skinned Idaho potato, for instance. It's not because I'm tough, it's a coping mechanism that just kicks in. It's a fail safe in the brain.

The staying positive thing is interesting. I feel like we're told that's really important, but I kind of hate it. I don't consider myself an optimist. A big part of getting through everything was letting myself feel what I felt when I felt it. (Kind of like Harry in the beginning of WHMS.) I didn't get caught in the positivity trap when scary/sad/angry thoughts came in. I let myself feel them. And I found a lot of solace through expressing those feelings, especially here.

And I had a lot of amazing support from family and friends. Shoutout to my support group homies from YSC and BCO! Oh, and a damn good therapist. And Ativan. And the Drakes Coffee Cakes I bought for an absurd amount of money on eBay after they stopped making them. And whisky.

xoe

Tuesday, March 18, 2014

Everything you always wanted to know about breast cancer*


How does the rest of that go?

Oh yeah.

Remember when in high school health class, the teacher had your write your weird/embarrassing questions on a piece of paper and drop them in a hat, to be answered later in the term? (One kid in my class asked about how to get rid of crabs.)

A lot of times when people ask me things, they seem timid...afraid of offending me, or hurting my feelings. But really, I'm an open book. (A polite term for an oversharer? Perhaps.)

Whaddaya wanna know? Curious about chemo-pause? Interested in IVs? Whatever it is, sock it to me in the comments. You can be anonymous (but I can't help you with questions about crabs.)