Sunday, December 11, 2011

The Diagnosis of Xeni Jardin

Xeni has become a friend in recent years and someone who's work I always appreciate, and use on this blog here often. Friday on the infamous blog Boing Boing, that she helped to start many years ago before most of us had ever even heard of the internet, she told her current story of her own diagnosis. Read the story below and a comment from another mutual friend, and another bad ass blogger, Richard Metzger (DangerousMinds) after.

I have breast cancer. A week ago, I had breast cancer, and the week before that, and the week before that. Maybe five, eight, even ten years ago, the first bad cell split inside me, secretly. But I didn't know. This is how I arrived at knowing.

Two friends of mine were recently diagnosed. When news of the first came, I felt sadness. When news of the second came a few weeks ago, I felt a different kind of shock. I'd never had a mammogram. Even though I was ten years younger than the time they say you need to start, it felt like time to start, and when her news came I thought: I need to do this right now. For my friends, for me. Solidarity. Something small I can do, some little action against the big unknowable that swoops down without warning and strikes the ones we love.

Around the same time, I'd became aware of a funny stiffness in a spot on my own body. But anomalies in women's bodies come and go all the time, and it was a fluid whatever-thing, something that would pass, definitely not a lump, nothing that my waking, speaking mind would grasp as danger. This anomaly must be misplaced anxiety, my logic-brain tried to explain to my lizard-brain; maybe it's me wanting to make my friend's bad news all about me.

I called my insurance company for a clinic referral, then dialed a few places on a list the guy in their Indian call center emailed. Over the phone, the clinics all sounded like places you'd take a pork chop to be examined, not a human breast, not a person, and not me. I googled around and found a place with a lot of stars on Yelp and other online ratings services from women who'd gone and felt they'd been treated well. Pink Lotus Breast Center. The women who answered the phone there sounded cool. I made an appointment.

I live online as much as I live offline. Often, I move around in the world staring into a device as I walk, sharing bits of one realm with the other. The morning I went in for my first mammogram, I felt nervous. I would tweet this new thing, like I do with lots of new things, and make the unknown and new feel less so. Maybe by doing so, I thought while I was driving, other women like me who'd never done this would also feel like it was less weird, less scary, more normal and worth doing without hesitation. I'd crack some 140-character jokes. I'd make fun of myself and others. I would Instagram my mammogram.

The women at the front desk were kind and welcoming. Both were from Virginia, like me. One of them is from the back-country part where there's still no internet. Her dad and uncle work the fields. We talked about growing corn and hogs, how they still make cane molasses with a horse-drawn grinder, and about poor white Appalachian babies nursed on Mountain Dew.

The mammogram technologist saw on my chart that I'd lost a loved one to ALS. She had too. I hugged her, and she hugged back. She folded my body into the machine, pressed some buttons, folded me another way, and the machine clicked and whirred and clicked and whirred. Then it was over. She told me to wait.

I tweeted the waiting. Inviting the internet in is something I do every day anyway, but this time it was like a shield. Nothing bad can happen in a new place if you're cracking jokes and 50,000 people are watching. You're safe out here, in here, out here.

The waiting-moment stretched out, and out, and out, and finally she returned.

Where was that thing you felt that isn't anything, she asked?

Here, I showed her.

Put your arms in the air, she said. She felt, and squinted, and her brow furrowed, and she stepped aside again. Then she returned. Come back in a few hours when the doctor is free, she said, and we'll look a little more closely with ultrasound, just to be thorough. She smiled. Maybe just go have some lunch, she said, and we'll wrap this up when you return.

The hours stretched out and out and out. I felt nervous, but it was still all normal. I was too nervous to eat, but not too nervous yet to tweet. A finger pulling down the iPhone touchscreen still yielded replies from familiar names, and this was all going to end well. I drove back to the clinic.

Dr. Kristi Funk is her name. How can anything go bad when the doctor's name is Funk, and there are so many funny things to tweet? She told me to lie down, put some goop on my chest, and waved a wand through the goop. The waves appeared on a screen. It looked like NASA video, something the Mars rovers might transmit home to a JPL engineer searching for distant water.

She showed me a crater in the waves, a deep one, with rough edges and a rocky ridge along the northern rim. Calcification. Badly-defined boundaries. Not the lake we'd hoped to find.

"The first thing you're going to learn about working with me is that I'm a straight shooter," Dr. Funk said. Her voice was steady and reassuring.

"That's how you know you can trust me. I'm going to tell you everything, and I'm going to tell it to you like it is."

I forget the rest of what she said, but it added up to this: the crater was cancer.

As the words sank in, the Mars rover crawled over another steep ridge, out of the crater and into a valley, and found one of my lymph nodes, larger and darker than the others. A rocky prominence. A sentinel node. No water there, just fast-dividing cells that kill.

I believe that we are looking at breast cancer, and that it has spread to one of your lymph nodes, she said. We're going to do a biopsy right away to confirm and learn more.

Another woman came in, and held my hand. Dr. Funk shot the biopsy gun in the air first so I wouldn't be afraid of the sound. That's when the shaking started and my heart started pounding.

I cried, but someone else was doing the crying, someone else was doing the shaking, someone else was lying there, and now the gun was diving in to someone else's flesh to bring back rock samples from outer space for the lab to analyze.

The shaking didn't stop. I tried to dial the people I loved on my iPhone with one hand while the assistant held down my other arm, pushing cotton into the place where the probe dove in for samples, where blood was now coming forth.

My fingers were cold and shaking, and I couldn't hit the numbers on the screen. When I finally got through, someone else's voice was coming out of my mouth, and it was taking forever for the stuttery radio transmissions to beam through space, from the cold planet I was lost on, way out here, far from home.

Treatable, curable, survival odds, margins, chemotherapy, surgery, radiation. Someone else's problems, someone else's words. The biopsy came back the next day. Those words became my own.

I do not know all of what's ahead. I know a little. I know that there is a new kind of life on the other side of this thing. A changed mind and body. A new appreciation of time, and breath, and health, and life, and loved ones.

The gravity in this place is different. I've spoken to others who've traveled out here, too, and returned home safely. When you become one of them, you learn quickly that you share a language others can't understand.

The trick, these fellow travelers tell me, is to accept the not knowing and find your equilibrium in that new gravity. Calm the mind. Find your balance out on the cold planet, whether or not you know the next step, or the date of the next appointment, or what good or bad news the Technetium-99 isotopes floating around in your blood during the last scan reveal.

You must be at peace with not knowing, they tell me. That is how you get through outer space, and find your way back home.

The thing about this thing, or, at least, this first week of this thing, is how it takes you out there to the cold planet again and again and again, when you aren't expecting it. Long, undulating waves of fear pull you out to where you are alone and unreachable, even by words sent from the strongest satellite.

The thing that brings you back is love.

Note from Richard Metzger's DangerousMinds blog:
As many of DM’s readers probably know, Xeni Jardin is one of my and Tara’s closest friends and favorite people in the world. As a mutual friend once said of her, “Xeni is like a being from an advanced planet or the future who has come to Earth to help us all evolve faster.” If there’s anyone who can beat this, it is, for sure, our Xenorita, and she is in really good hands, which is a real comfort to all of us who care about her. Send some good vibes—and love—her way in the Boing Boing comments, won’t you?

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