Saturday, May 11, 2013

Holy Water

It's been years. I am grateful for years. I am now on daily chemotherapy--but thankfully no more drip. I've added a few more medications. Now the kidneys are the issue. I can hardly blame them for their exhaustion--the pills and treatments, never plain, good ol' drinking. The kidneys are grey, tired, wrinkled beans, filters clogged like limp leaves in a rain gutter.

But the years have kept coming, somehow, with the kidney biopsy tucked in the day after my comprehensive exams. My hospital roommate a woman who cried that she was afraid of the ghosts; my view the strange, small India Point bay in Rhode Island. My doctor a small, kind man, congratulating me on passing exams. The old cliches, "Do you want to good news or the bad news first?"


Now back in New Mexico it was three years of a dream. Snow for months, wet socks and umbrellas, crab cheaper than beef, brick walls that really supported ivy, drives cross country--Graceland and tornadoes and the Blue Ridge and Travel America and DC and ice rain.  Somehow the books and the dogs and the cats and I got back here. Somehow through rashes and fatigue and the frustration of almost never being able to call forth the exact word I want to say, somehow I got back. I am still stunned with every sunrise, I am still terrified with every small ache, I still avoid the thermometer for fear of confirmation that I am really, and truly ill and must report to ER.


I am back planting. I am back reading. I am back building fires and making stew and hanging out casual-like, I am back petting the cat. The everyday is still stunning to me almost 12 years since the biggest of all big medical events. This time of year owns me in a way no other time does--the season when my life always changes, the season when Mother's Day opens to Father's Day and I celebrate my survival with both joy and confusion. Never feeling worthy of the effort the doctors and nurses and family have invested in my survival. "But look!" I want to say, "Sometimes I can do a really nice thing." But that's only sometimes.


We all survive in these bodies. We all come back around over and over, to May, to June, to the sound of rushing water that once caused infection but will now irrigate fields, to the sound of rushing water that is now a blessing. It is again, my Spring.

Wednesday, July 8, 2009

Happy Birthday, Little Sister

Two days before her eighteenth birthday, I gave my little sister good news about my health. Poor kid. She’s grown up with all the anxieties and fears of having a sister with a chronic and sometimes deadly illness. Since she can remember she’s heard murmurs of my hospitalizations, my setbacks, not so long ago I found a note she’d written to me at the age of six, her unsure, uneven, large printing on a Lisa Frank card, it said “Mom says you can’t open doors anymore. I hope you feel better.”

Camille was referring to how my lupus flares often manifest in the freezing and swelling of my joints—what led my friends to begin calling me “Lobstergirl” as periodically I’d wake with two claws; my hands transformed into thumb and a useless pad of immobile fingers.

I, of course, wish she hadn’t known this. When I could, I tried to shield her. My face was always the bravest around her. When I ended up in Albuquerque’s emergency surgery and M-ICU with little chance of survival, I made it clear that Camille was not to come to the hospital, was not to visit my room. But still she knew. She saw the worry and fear of our family, she overheard the details, and later saw the neck wrap bandages and was told to tiptoe around the house as I recovered.

So yesterday evening, in a moment that I think only she and I registered, she cheerily and cautiously asked how my chemotherapy went. There were other people in the room, but direct to Camille I explained that there was good news—that my white blood count has dropped significantly (something we’ve been trying for since February) and more importantly, the last echocardiogram showed no fluid around my heart. For the first time since January, my heart scans are clean. Camille and I both gave each other faint smiles and she teared up a bit. It is, I think, the first time I’ve reported news of my health to Camille that is good. A victory I never knew I yearned for.

The docs also said I have to be on chemotherapy for a full two years—that’s with my six months time served. So, eighteen more months of this although I had planned on a tough Spring and Summer and then the chemo would be all over by the time we moved. Instead, I will find a new chemo ward in Providence, or Providencia, as my grandma melodiously says, and there will be a new cast of characters—East Coast doctors, residents, interns, nurses, fellow travelers of the slow drip. Maybe in early 2011, when I finish the Cytoxan and Camille is nearing twenty I can give her more good news. Maybe there will be good news some places inside those eighteen months.
Wednesday, June 17, 2009

Like the Movement of Tongues

Today I was grumpier than usual on my way to the Cardio Pulmonary Center. I try to never go to the doctors negative, as if my very attitude will register in my blood, contaminate the tests. But today as we drove up to the building, which is a Senior Health Center, I couldn’t stifle that moment of self-pity that I am a young women whose health is monitored along with those in their seventies—survivors of heart attack, stroke, high blood pressure.

I have fantasies of sitting in the waiting room of a sports medicine doctor—with other virile, athletic twenty and thirty-somethings, in running shorts and tennis shoes, my ankle wrapped from twisting on a hike, or my wrist sprained from a spirited racquetball session. I daydream about what it would be like to get an ice pack and ibuprofen and to be told to lay off the gym for a couple of weeks.


But my misfortune and fortune is that I am young in an office of the old; other folks, including the staff, wondering why I am there. Today was a follow up echocardiogram on my pericarditis and pericardial effusion. Recently, my blood work has shown improvement but the chest pains persist and the question is whether or not the inflammation of my heart is continuing or if long-term scar tissue has formed, meaning that pain will likely always persist as a trace of my January 2009.

I am called in, put on the customary robe, the probes are affixed. I am on my side, ultrasound gel dripping down my chest as the tech leans into the screen squinting. It makes me anxious to try to divine the expression—concerned? alarmed? everything normal? My strategy is to instead concentrate on other details. I look at the tech’s highlights, split ends, I see that she’s reading King Leopold’s Ghost, it’s sitting on the desk, and she’s about a quarter in. I read the post-its on her bulletin board, I look out the window, looks like it might rain. I try to practice the meditation phrase from last night’s session, “Calming my whole body, I breathe in. Calming my whole body, I breathe out.” But the movement of the rubber baton, fixing it into place above my heart over and over again interrupts my try at calm.

The music in the background is faint, but these songs play in this order: Beyoncé’s “Irreplaceable,” followed by “Freakshow [on the Dancefloor],” then “Total Eclipse of the Heart,” which isn’t as funny to me as it should be. Once in a while the tech ups the sound on the echocardiogram machine and I can hear the amplified beat of my heart. It is like the thumping of a frog in an attempt to escape a plastic barrel, hitting the walls repeatedly—persistent yet irregular.

At the end of the exam I wipe the ultrasound gel of my chest and neck, I say thank you to this person I have become strangely intimate with. Then the tech leaves the room and Patricia and I talk as I get dressed. She says the screen looked like a normal heart to her, she smiles. Last time I got a chest ultrasound, Patricia said she loved watching the beating of my heart. She said the movement, the whoosh-whoosh of my heart muscle looked like tongues moving, like kissing. Her sweetness makes me want to be stronger, to not complain, to be grateful. And I am, and on the way out of the Senior Health Center I wish to one day be old.
Monday, June 8, 2009

Seismic Waves

In California I was taught to stand under a door frame. I remember centering myself, arms stretched at my sides, legs apart. If the building fell down, the frame would stand, and the frame and I would survive together.

My mom asks me how I prepare. Her English is very formal—she speaks as those who acquired it as a second language. Few contractions, formal words, careful sentences with adjectives only sometimes in the wrong order. “What are the necessary preparations the day before? What arrangements do you make?”

She is trying to be helpful and I can’t quite answer. I suppose we’ve got a system now, unspoken, for the chemo days. The day before is usually lovely, and lazy. We do something we’ve wanted to do— go out to eat, watch a movie, take the dogs to the park. Eat huge meals, all three. I get other things in order between, in case I’m out for the week. Our refri and freezer are stocked with juice, popsicles and ice cream for the nausea. We decide what we’ll do during the drip—watch a DVD, read together— and Patricia packs the bag. I choose comfortable clothes that I can pass out in when we get home. I drink water to excess, thinking I’ll spare my bladder, liver and kidneys the damage from the Cytoxan. I make lists of questions to ask the doctor; try to remember the trajectory of blood counts.

I brace myself. I don’t get used to the feeling. Each time we drive down Lomas towards the hospital, each time we ride the elevator to the fifth floor, each time I check in with the OTC nurses, who greet us with wide smiles, the sort reserved for the old or the ill, both kind and sad, each time, I wish I could turn back. Start the year again—avoid the chest cold, the virus, avoid the restlessness, the long drive home from Dallas, the strain of grades and applications and family. Instead, I settle in to the oversized reclining chair, arrange the IV pole, tuck my feet under myself and smile weakly to the rest of the room.

I now have a port, a central line to my heart. This was ‘installed’ awhile back to administer the chemotherapy more efficiently and to spare me pokes and angling for a vein that often took the better part of an hour, once resulting in the piercing of my artery. So now a small node in my chest is ever-ready for the drip—this makes tight or low cut shirts an impossibility and has transformed firm hugs into deep aches. It feels like a hook, pulling downward as I walk. Still, the port is supposed to make my time at the hospital slightly less and avoids the sore forearms and choked back pain.

My restlessness builds the more I try to compose myself, to hold still, to breathe in. On Tuesdays in the chemo ward, falling objects, ceiling tiles, lights, brick and mortar, and me and Patricia in the door frame, wrists strained, legs braced.
Friday, April 17, 2009

As Though Everything is Possible

We’re moving to Rhode Island so that I can start my PhD program. This seems ill advised as I have just gotten the last set of new information from the doctors. My chemotherapy seems not to be shifting my disease activity much—white blood counts haven’t decreased, inflammation isn’t down, there’s still chest pain. I am bloating from the medications, only two pairs of pants fit anymore. I am getting the facial rash and bumps on the chest, and last week’s chemo was tougher than any past treatment; it took me almost five days to recover enough to get out of the house. This because we’ve nearly doubled the dose in the hopes of pushing my disease into a restive state.

So why Rhode Island now? Why are we arranging moving trucks, starting the sorting of stuff into boxes, shampooing the rug in our rental home?

I told my mom this last night: I have to live as though everything is possible.

Since being diagnosed at the age of 23, I have had days I could not walk, I could not zip zippers and button buttons, hold a glass, I have had countless hospital stays, been in two comas, contracted flesh eating bacteria and given a 20% chance of survival, I have had 16 surgeries, and now I have a new set of organ involvement concerns with this old heart of mine. This year began with a swollen heart, a murmur, the inflammation of the lining of my heart and a crazy day when I gasped for air and clutched my chest, reassuring Patricia I was not having a heart attack but doubting my own assurances.

Also since the age of 23, I have spent amazing cold months in Chiapas, hiking the hills, watching as El Sup marched into San Cris with thousands of indigenous, taking over the city, I have rested for an afternoon at the top of the Pyramid of the Sun in Palenque, I have seen my little sister make it to the state cheerleading championships and sat at the UNM Pit among the proud parents, my dad tapping his foot to the music with his Albuquerque Bulldogs t-shirt, I have eaten four kinds of mashed potatoes in one sitting, I have collected sand dollars at night at Santa Cruz, when Patricia first stood at the Pacific Ocean, I have taught at the Indian college where a young girl said to me “Andrew Jackson—he’s, like… our Hitler,” I have received my BA, my MA, I have fallen in love, I have talked about having children, I have danced for hours to gospel house with my big sister, I have lived as though everything is possible.

Last week the NIH study revealed some new findings. One of my many tests was a transesophageal echocardiography (TEE), which is an ultrasound of the heart obtained by passing a small tube with an ultrasound probe into your esophagus. It was only slightly uncomfortable and allowed me an afternoon of Versed haze. The tests, along with some others were looking for Valvular Heart Disease (hardening, small growths, or leakage of the heart valves). Unexpectedly, my left valve showed vegetation, something that is unique to Lupus patients. These vegetations can be dangerous if they dislodge and are the focus of the NIH study.

The research docs believe the vegetations—something like tiny seaweed-like scar tissue—may be a cause of Neuropsychiatric Systemic Lupus Erythematosus (NPSLE). NPSLE includes stroke, transient ischemic attack (temporary or mini-stroke), disorientation, decreased level of awareness and thinking, seizures, and irrational behavior. The hardening, small growths, or leakage of the heart valves that are commonly seen in patients with SLE may lead to the formation of tiny clots in the heart valves which then may dislodge and travel to the brain and cause brain damage.

So weirdly, here I am at the age of 35, ancient for a Lupus patient with my degree of disease activity, now being told there’s some new little hidden dangerous thing in my left heart valve. I am left to take my daily aspirin and envision that vegetation grasping at the walls of the valve, welded to the wall, not dislodging, never dislodging, clinging stubbornly to the wall for decades, refusing the warm streaming blood year after year.

Every deep breath for the last week has felt like a risk, laughing loudly as I do, a gamble. I tell my mom that the danger isn’t in moving, the danger isn’t living in Rhode Island. The danger is living in my body.
Tuesday, February 24, 2009

Either an Illusion or a Miracle

We are talking about chemotherapy casually. When I was in the hospital, the nurses would say, “Tonight you’ll get your treatment around 8pm” or “Let us know if you need any more anti-nausea medication after your treatment.” And P and I laughed at how no one would say the C word to me. Now we’re saying it to each other all the time, to drain it of force. We’re talking about the doctors installing a long-term PICC line to save my collapsing veins, we’re talking about the risk of bladder rupture [small], we’re talking about brittle finger nails. We’re strategizing our treatment days—where we'll park and "Let’s buy a headphone splitter so we can watch a movie on the laptop." We’re welcoming it, grateful that there’s treatment available, hopeful that it may interrupt the disease.

That my disease is active was no news to me; I have felt it every day, on every flight of stairs, every time I attempt to button my shirt, every time I slip on a pair of boots partly because the small movements required by zippers and laces elude my swollen fingers, every time a fever strikes, every time I have to catch my breath mid-sentence. What was news to me was that my disease formed a new appetite—away from joints and cartilage to organs. Autoimmunity, I was once told by an acupuncturist, is a physical manifestation of self-loathing. But I don’t know. My assent to chemotherapy is very much about loving the body that moves me through the world, my assent to chemotherapy is very much about wanting to continue to move through the world in this body. The monster under my bed is not my body, is not my disease.
Sunday, February 22, 2009

Writing is Daring to Remember

A couple of summers ago Richard Rodriguez spoke in Taos. We drove up for the day and he came out like a proper dandy with light linen trousers and a pastel coloured shirt. He began with writerly jokes and then like bread to flesh transmuted into some careful, sad sage. What Richard had to say was:

He remembers going to the bedside of Tillie Olsen, who was slowly losing everything to Alzheimer's and yet lay in bed singing socialist revolutionary songs. He remembers what it felt like to first read D.H. Lawrence and recognize "the working class voice assuming a middle class accent." He remembers the writers who created him. For, writers create writers—D.H. and James Baldwin—saying that he writes for the dead, "For those authors who created me."

Richard said "Writing is daring to remember." He spoke a gorgeous interwoven memory and story, the shaky yet sure timber of his voice, the call to write, the call to read, the assertion that "the subject of writing is what it means to be alive." There are only two things to write about afterall: life and death.

The stakes seem truly high everyday; nothing to think about, write about, but life and death. Nothing but a focused intention to persist. And just like fear, there’s no discussing pain in the absence of it. The point is that we are all going to die, that we have these bodies that can breakdown, or rather, that tend toward breakdown. My reaction to treatment has been detached; I have yet to fall to my knees in thanks; instead, I have smiled up at the sun standing in the backyard, I have sung along full voice in the car, I have read any magazine with surprising appetite, I have hugged tightly to softness, I have marveled at common conversation and wished I were capable of it.

Even through chemotherapy, which is like a hangover without the night before; I have spent entire days happy, still in pajamas, reading books in a sunny spot—a true day off of school fantasy. I have dozed in the afternoon knowing a friend comes at evening. All of these things you do between lives. I approach myself like I am peeking in on a sleeping child. I am standing in the doorway, careful not to rouse her, and by a faint stream of light from another room, I am smiling.
Wednesday, February 18, 2009

Nostalgia for the Present

I am reading all of my doctor’s published medical papers. Yesterday’s discussion with him seemed almost collegial. It’s funny, I could hear him talking to the residents across the hall about my case; they call me “The Student.” Unfortunately, the Student’s blood work showed little improvement and so the Student must have continued chemotherapy along with steroids and anti-malarials and the Student must prepare for a lifetime of immunosuppressant drugs. The Student keeps a graph and spreadsheet of her test results and wanted the white blood count to dip further than it did. Because of the chemotherapy’s effects on her ovaries, the Student has probably just given up the opportunity to give birth to a child. The Student is hoping for better on the next visit.

Dr. S, a very, very tall, pale blue eyed, bald doctor was truly caring; speaking slowly and kindly to Patricia and I, showing concern and walking us over to the chemo room himself as he explained more about the treatments and his hopes for my recovery , and perhaps one day, remission. There are no words for the chemo room--beds laid out, a handful of people hooked up to tubes of nuclear liquid off IVs, a young scared looking girl watching a portable DVD player as the poison drips. "You're a member of the Cytoxan Club!" Dr. S said, trying to sound light.

In there, as I avoided looking too closely, we talked about cardiac health and Systemic Lupus and Dr. S recruited me into his NIH study. Funny, I had just been joking that if I didn’t get into a PhD program, I’d offer myself up to the National Institutes of Health for experimentation. Maybe I can still get both. The study gets me some free healthcare, some free travel, and may help me avoid dangerous blood clots and further cardiac involvement. I am, for this reason, hopeful. I also like the idea of being Patient X. Patricia says she loves going to my doctor’s appointments—“You’re like my own Mystery Diagnosis!” she says kissing my forehead.

This morning I was still trying to shake the chemo room. And so we packed up the kids and went south. A beautiful New Mexican sky above us, we drove toward Socorro and I told the story of my dad’s storefront church there—how I was mortified because of the windows that let people see in as we prayed and sang. Earlier in the week, my dad and I had breakfast. He told me how my grandma made a promesa that if he returned safely from Viet Nam, she would walk from Deming to the church at San Antonio. And so today we drove south to San Antonio to also give thanks for my dad’s safe return and my own and to see my grandma’s own careful path. We went first to Tomé, where the entire jornada lays flat beneath the hill, where folks stopped to assess the threats ahead of them as they moved further from the water source, the rio. After the slow walk up, with my heart pounding, I stared out at the jornada del muerto not knowing what to pray for. Black volcano burned rock beneath my feet, bright morning sun above me, I felt as solid as land, and as fleeting as the coiling cold airstream.

All day it was like this; the laughter in the car, the singing along, the green chili cheeseburger at the Owl Café while Patsy Cline played—Patricia put a quarter in the jukebox for me—the snow birds, the homemade fudge from the General Store and the sunset drive north to pink-blue Sandias. This has happened to me for so long now; the terror of my body opening me up like some morning glory at dawn. My nostalgia for the present.
Monday, February 16, 2009

Defined By Our Wounds

Years ago in the blue house, Frida reminded me of what Franz Kafka (who I like to call Frank) told me years before. “We are,” she said from behind her monkeys, from beneath the glass, from above the bed, frozen in the mirror, “We are defined by our wounds.” For this reason I never corrected the scar. It is one that runs across the neck, stretches to the shoulder, down into the chest. The scars on the thighs from being peeled like an onion to acquire some small layer of skin to craft an earlobe, the bursting oval scar above the right breast where a drain was once installed. Today for the first time this year I have worn short sleeves in public, bruises from IVs and chemotherapy bare on my forearms. When the hospital comes for me, it means business.

I find myself back. Ten years back. Being driven to the ER, head swimming and warm, a worried and efficient driver insisting on treatment.

One’s body as a shared responsibility makes life chillingly inchoate,the potential of retreat can cause some head-scratching realizations, and a sort of restorative rest besides. Like that morning in 1998–my sister finally giving in and up on my assertions that I was just fine; making some calls, and dressing me, with scarf and gloves, wrapping me in a blanket, and nervously driving me, fevered, into the San Francisco Medical Center, hoping I’d be better by noon, but prepared somewhere beneath for the event that this would be our last morning together. Her, one hand on the wheel, one hand on my forehead, chatting and playing some Brian McKnight to lighten the mood, and me squinting and struggling to keep the heavy glass thermometer under my tongue while the car drifted forward.

That time it was voluntary coma and Epstein Barr virus. I slept through my 25th birthday and when I woke, my life had become simply something to be participated in, along with everyone else, a little game board to monitor; there was no taking anything in hand, or making any decisions, even on the most minor of details, just a series of tired negotiations to be had between naps.Nice, you know, to give in after months of tending and struggle, and to hand the body over, to share the trouble of it, its needs parceled out to a group. Perspective changes after submitting for awhile. The being fussed about. And when one comes out of it, one’s condition being super-recoverable, one gains patience and humility.

I consider my walking away from a solitary life–my world created with Patricia–a prolonged version of wrapping up a so-loved sister in a blanket and signing her into the best judgment of strangers.

And I am back. The interns and residents, the specialists from three fields, the adjustable bed, the phlebotomist, and the chemotherapy drip. Except now, ten years past, my heartline on the monitor flips upside down. It begins good enough–green, rhythmic peaks, but then it is interrupted by dips below the flatline. And every dip below the flatline brings up the resting heart rate and it is as if the machine has learned to register my quiet terror.
Sunday, February 15, 2009

How to Live Forever

I could live like this forever. I could live taking pills and collecting urine. I could live in my pajamas eating oranges slowly. I don’t require movement, bottled water next to me. I could live taking vitamins and short walks. Live like this, with no complaints. I could live–five small porcelain dishes on the counter, meant originally for shoyu and wasabi. The five small white porcelain dishes on the counter, exact doses, split apart. Morning is simple, they don’t require food, and the painkillers are here. Mid-morning, the pretty pink addition, by lunch they get bigger, no longer small round compact, the dish is pinned down with long ovulars and a harsh yellow octagon. These hurt; stick in the throat. By dinner, I’m full, but need–need, I’ve been waiting since waking–the fourth dish that provides the round ones that regain my focus and the little guy that numbs the burn in my hips and back. I can live like this forever, count, distribute, swallow down. More for bedtime, as late as possible, to make waking less painful. Sundays are different. Vitamins are not included. I could live like this, filling out forms and waiting in lines. Healthcard in hand.

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