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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.


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.)

Sunday, March 16, 2014

For the boy

I love Modern Love. The David Bowie song, yes, but also the weekly column in the NYTimes. This weekend, I read what is possibly/probably/likely my favorite one ever, in the nearly ten year run of the column. It's by Mary Elizabeth Williams, a writer for Salon who is also dealing with a diagnosis of stage 4 melanoma. I met her years ago when she was a guest speaker in one of my classes in graduate school. But anyway. I cried (in public) at several points in her beautiful essay about connecting with her husband again after a separation, and doing the whole cancer bullshit thing together shortly after. This is my favorite part:

"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."

And she reminded me, the way being in Rome (just before the fall) did, of what I am so lucky to have in my life. That despite the imperfections in our relationship -- the blots and stains that mean we are real, I realize -- it is exactly right. The intense wall of solid emotion I feel when I acknowledge that he is a man who shows the fuck up. Seemingly nothing, maybe, to those who don't know the disappearing act that is so common in the world, but it is everything. It is everything that I never once worried as I undressed in the exam room, baring my sad stitched up shrivel of a body, that he'd cut and run. Never as he paled and got sweaty for me while they plugged away trying to find a vein for my chemo, never when taking him along, plumbing the depths of my dark little mind, did I worry he'd go. He is steady.

That is not to say that there are no fears or frustrations, or failings on both our parts. But it feels okay when I know the marrow of us good, clean, pure.

I know that after these nearly two years of intense closeness, there is bound to be a pulling away for a while. Time for us both to nurture things on our own. It hasn't happened yet, but when it does I hope that I will know what it is, and that we will draw together again. It may mean I read his mind with less ease, and he has less patience for my never ending projects. There will be fights about work schedules and glitter embedded in the rug. Stories, and life, are made of a series of connections and disconnections.

Every so often, I think about the darkest place I've ever seen. It was when Matt was just home from the hospital to remove the walnut-sized lymphoma from his throat. He'd had to have a tracheostomy to be able to breathe after the surgery, and was in the hospital with it for several days. When it was removed, he came home, and I was in charge of caring for the wound. I guess I expected to see a gory stitched up slash when I changed the bandage. I was surprised at what was there -- a black hole. Looking in, I felt I was on the edge of something very high, with far to fall. I swallowed reflexively, and covered the bloodless wound with an extra large gauze pad. The inside of the human body is the darkest place on earth.

Some might think it sad that I experienced my last first kiss when I met him at the ripe old age of 19. I think of another girl, the other me whose presence I do often feel, who's had a different life and run around getting all sorts of firsts with all sorts of people. She has lots of fun. But I say I have one up on her -- and that is, I know who will follow me into the dark. 

Friday, March 14, 2014

Ballads for a Clinical Trial

My stars

Tonight as I hunch over my keyboard, my shirt is pulled down giving air to my new tattoo. It's halfway down revealing my missing breast and the constellation Cassiopeia that now dances across my ribs, like she's always been there. I look over at my reflection in the window, and see those stars, and superimpose them onto the cloudy charcoal sky. For the first time in a long time, I see something beautiful.

Thursday, March 13, 2014

Pony dreams


I long for a pony tail.

A couple of months ago, I dreamed that my hair grew to shoulder length overnight. When I woke up, I had to touch it to see if it was true. (It wasn't.)

And it won't be long again any time soon. So instead I go through the motions of putting my hair up -- smoothing it back, gathering the bottom, tying it at the crown of my head, all the while the short bits fall back down, or bristle away.

When I see girls with pretty pony tails, I must resist the urge to pull them. Hard.

Before I started chemo, my sister and mom went with me to a wig shop. I was pretty sure I didn't want one, but figured I should check it out. The saleswoman took me back to the try-on room, and brought me the closest approximations to my real hair. I tried on several, all of which left me looking like some variation of a Simpsons character. I was feeling pretty strange about the whole thing, and the saleswoman was unsuccessfully trying to cheer me up. (There was another woman sobbing out in the showroom. It wasn't a great day for anybody.)

She went on to explain the rules of wigs. Acrylic ones, like I could afford, required less care in general. "But," she warned, "always remember to take it off if you're doing cooking or baking."

"Why?" my mom asked.

"Well, the heat could melt the fibers. Or it could ignite."

Um. Well. Okay.

She tried another wig on me. It seemed to hover above my head, conspicuously voluminous in a way that my own hair was not.

Then my sister Olivia took down her knotted pony tail/bun. Her hair, which is almost black, and ludicrously thick and long and shining, tumbled down. It felt like it took several seconds for it to completely unwind. I could have sworn there were sound effects. The saleswoman gasped.

I looked back at the nest on my head. Some women look great in their wigs. Sometimes they look absolutely like real hair. I, however, looked like a strange child who had raided a high school drama costume closet.

So I said no to the wig, and we left before Olivia could be enticed into selling her locks to buy a train ticket. Oh wait, that's another story.

Thursday, March 6, 2014

Wednesday, March 5, 2014

Scar tissue

Okay, so this morning my physical therapist told me to google image scar tissue. (We've been working on reducing my clumps of it for a few months.) So I did, and it's pretty gross. It looks like half dried glue. Anyway, I came across this:


So, please, shove it Henry Rollins, and anyone else who starts with this "what doesn't kill you" crap. Cancer has not made me stronger. It has made me weaker. I'm not saying that to make anyone sad, it's the simple truth. Physically, in that I can't operate the freight elevator at work by myself anymore. Emotionally, in that I'm jumpy as hell, and sometimes a meanie. I'll get back to where I was, but it takes a lot of work. And I don't appreciate the dismissive nature of this sentiment. Hard things can just be hard. There doesn't have to be a ray of fucking sunshine all the time. Mmmkay?