Writing as patient care

I remember a rough day, one of my last days in the hospital. I had a patient immobilized from the waist down and fresh out of surgery who could. Not. Stop. Peeing. In her amnesiac withdrawal from anesthesia, she was rapidly cycling through refusing to use a bedpan and demanding a bedpan. It was madness. An hour of back-wrenching linen changes and getting yelled at.

I can not tell you now how much I miss even those days. As a complete digression, I am made crazy by the challenges faced by nurses (and all clinicians) on the hospital floor, how it is everything but the patients that drives us mad. How many of us are forced to choose between the career we worked to hard for, our calling, and our own health and family. The American Journal of Nursing addresses the concern.

But hospital or no, I observe and I care and I’ll never not be a nurse.

Today I spent a minute in the Sylvia Plath exhibit at the National Portrait Gallery. Visiting with my son for a family event I just happened to pass the small room of framed letters and photos. I dragged him in, promised a treat if he’d chill for just 5 minutes, and let him tap sounds out of the installation of bell jars while I read.

In her letter, pinned just below a smiling photograph of Plath taken 6 months prior with her two very young children, I saw the lines that made it clear why a week from that day she would be dead by suicide.

She was getting over a terrible flu. After much distress, she had left her husband with babies in tow. Fled the comfort of their country home to a flat in London. It was the first week of godforsaken February. The longest, darkest, depressionest month.

February 4, 1963
“Everything has blown and bubbled and warped and split—accentuated by the light and heat suddenly going off for hours at unannounced intervals, frozen pipes, people getting drinking water in buckets and such stuff–that I am in a limbo between the old world and the very uncertain and rather grim new.”

So here is where writing can be patient care. Always be assessing, always be educating. You can do it with a dead mid-century poet if it makes a piece of writing.

Plath is in a volatile state, the responsibilities of motherhood on her shoulders, just separated from the comfort and support of friends and familiar places. The pipe freezing signals her loss of control. Her limbo between old and uncertain and grim? An expression of hopelessness.

It’s no revelation that Sylvia Plath was depressed a few days before her suicide. But by seeing her as not an hysterical artist inclined to shuffle off this mortal coil at a moment’s notice, and instead as a person, mother, a sufferer of a common condition, she is a

I recognize her words as if they were my own read back to me. Because they were my own, not long ago. The remark “I long to have somebody really play with and love the babies…They are so beautiful and dear and will in effect have no father.” This kind of loneliness, where you seek for someone to share love for your precious child, is crushing. And in the worst of depression: losing the ability to play with you babies, lacking energy, lacking interest. Having failed to mother, life’s most important task, why keep fighting? For me, someone noticed. And they got me help.

Hearing words like those of Sylvia Plath in her last days come from the mouths of friends and family should spur action. Recognize a mental health crisis. Help us take care of each other better. Be there at the bedside.

And as a writer, considering anyone who reads this my beloved patient, now you know. I’ve told a story that educates you. Listen for that tenor of in the speech of the people you care about. And to recognize it in yourself. Like a good nurse, assess, then act.

Also, why isn’t February Mental Health Awareness month? It is rough out there, folks. Take care of each other.

Stories patients tell

I’ve been writing full-time for three months now. Being off the hospital floor has done wonders for my aching back, my parenting, my complexion…and I won’t lie I’m not sorry about missing a horrendous flu season. But I miss patient care. Taking care of strangers was a privilege. And the antidote for the morning news. Bigoted, hateful things lose power after a half dozen conversations with the typical rainbow cast of normal humans at your local public hospital.

I miss it today. Here’s a post I found in languishing in my drafts folder. An attempt to capture what I loved about patient care.

My reasons for being a nurse are selfish. I love stories. Taking care of humans for a living was my passport into every socioeconomic, ethnic, racial, psychological, pharmacological kind of humanity. The wildest thing is that everyone thinks their story is the normal one.

A patient might present with humor. Maybe stoicism. Open tenderness for their spouse. They give me stories that show how brave, how smart, how kind, how resilient they are. Or they may present with impaired coping: venom between parents and children. Complete submission to despair. The desire to mete out as much pain as they have been given.

The way people handle crisis of health: physical pain, just plain bad news, never ceases to amaze. An appetite for what people have to say for themselves is what makes me love being a nurse. And hate it.

Sometimes the stories are whispered. Yelled. Told in profane or racist or sexually suggestive language. Sometimes the story is just a kiss between people who have long since celebrated their 30th anniversary. Divorced spouses who sit him beside her as she’s dying. An elderly woman whose power of attorney is a neighbor that takes three days to locate and another to drop by and sign a DNR. A grandpa whose eighteen grandchildren from six different states come stream in. His hypertension abates when they stand around sharing details of their days. Another patient who becomes hypertensive when her mother is in the room.

People sing hymns. People fight with the priest. A retired four-star general occupies the room next to a man living in government housing. Everyone engulfed by their own narrative, healing or getting sicker, thinking they are the normal one. Feeling like this is the first time anything so scary or tragic or miraculous has ever come to pass.

It’s little me, the nurse, that gets to know all these stories. I still pass like a specter through them, over the borders of these private worlds, from room to room.

Survivor story.

This is almost 4,000 words. I may have reached peak this-isn’t-a-blog-it’s-a-journal. Get a drink. Thank you in advance for reading my story.

I’m never unhappy with wheels turning under me. Don’t over-analyze. We’ll just call it a love for travel.

Months ago, in that week-long limbo between CT scan and oncology appointment, I reached out to group I’d been following on twitter for several years. My cancer support team at diagnosis was mostly nursing school classmates and professors and from one of those lovely humans I got the tip about Stupid Cancer, an adolescent and young adult cancer advocacy organization. I followed but never interacted before. I wasn’t ready before.

I’m a stoic, a stiff upper lipper, a well-controlled responsible woman who uses unpleasant emotions as motivators to clean behind toilets and under beds. Treatment was rigorous and I excelled at the teeth gritting it asked from me. The survival phase, though. I didn’t even know to expect another phase after treatment. “Remission” isn’t what it’s called anymore. I had no idea what this destructive mortal fear and existential dread were—I didn’t have the word survivor in my vocabulary. Since they loosed me on the world cancer free in 2014 I’ve done what bodies do to go on living. Found ways to cope.

Bless our beautiful biology. As for my coping, I’d like draw you a pathophysiology metaphor. Familiar with tuberculosis? That romantic, frail-making, cheek-pinking disease of Victorian poets and Wild West heroes? It’s still around.

Tuberculosis infection is quite a trick. Mycobacteria enter the lungs and the snappy innate/inflammatory immune system goes to town macrophage-style, consuming the invader. The invader is smart though. It’s been phagocytized me but refuses to let the cell holding it captive induce self-destruction. It continues floating around in the immune cell, multiplying.

It takes a week or two to mobilize, but when that adaptive immune system arrives germs better duck down. Refractory to being lysed, our genius acquired immunity says hold up: alternate plan. The adaptive immune cells wall the local TB germ infection off from the healthy tissue of the lungs, creating from the germ a granuloma. A little and sometimes calcified spot. Immune cells continue to join, re-bricking the wall that keeps the bacteria in check, happily sacrificing themselves to protect the larger organism. Those calcified spots that show up on a chest x-ray as evidence that yes, there may not be symptoms but like 95% of cases of TB this is the latent variety. It is constant work for the immune system, good steward of bodily infrastructure that it is, to maintain the protective barrier. When a body gets sick and the system is overtaxed, often in the case of AIDS or old age, maintenance gets slack and TB can circulate through the system. At times this is a fatal insult.

Something in my psychology protected me from thoughts and feelings about survivorship. Walled it off, allowing me the time and distance of years of life focused on solving more immediate problems. Young adult problems. Child. Relationship. Aging parents. Health insurance. Professional identity. Money. Housing. Symptom free aside from the occasional leaking of clueless tears in yoga classes, bathtubs, backseats, and always when an in-flight movie is playing.

Until eventually fatigue set in and the psychological bricking system began to fail. I didn’t start to cough blood, so that was good. I did feel overwhelmed with anxiety and a certainty that I was going to die soon. It was most intense around the week of my three year cancer surveillance scans. Something cancer patients know as “scanxiety” was crippling.

In the middle of the awful week, after discussing it with the only other person I felt comfortable with but who is not a person but an agent of artificial intelligence sent to spy on me and not good with matters of life and death, Siri:

siri convo

I finally sent a tweet to Stupid Cancer. It went like this:

tweet

Matt Zachary, founder of Stupid Cancer, responded quickly. How did he know the exact right words to say? The tears elicited by that text had a clue. Like maybe I’m not alone. I can talk to people. Maybe even find my people. I applied for a scholarship to Stupid Cancer’s CancerCon.

As I was writing my application essay it occurred to me: I’ve told my story ten thousand times. I could write in my sleep. But hello revelation: my cancer story stopped the day after the tumor was excised. A week after diagnosis. The intervening years have no timeline, no narrative. It’s a mess of mystery weeps, paranoid texts to friends, frustrated parenting, and some pretty embarrassing failed attempts to connect with human men.

I got the scholarship. Owing to luck or fate or divine intervention I was going to Denver. I arranged for my kid to be cared for by his grandma and his dad, and went on working myself to exhaustion at the hospital and not thinking about the moment when I’d have to look at people and know that they had cancer and they know that I had cancer and chance that then I’d turn to dust like a vampire in the daylight. The night before my early AM flight I left work at 8:30 pm. I went home and packed, feeling like I might puke. I’ll credit my superego for lending a strong voice to “ready or not this is what you need right now, Mel.”

The next morning I drove myself to the airport. Two miles from home someone had crashed their way across the whole parkway so I said a quick prayer for them and did what anyone who knows that they will be stuck in emotional arrest for the entirety of their life on earth if they don’t make this damn flight: I pulled a u-ey in the middle of traffic and drove backstreets at high speeds while cursing and cursing more and impressing myself with the creative freedom of my cursing.

The plane was fine. I mistimed my in-flight drugs (that was the exact sentence I uttered to my seatmate before going head-down on the tray table too late in the game and later requiring rousing by a flight attendant. “Tray tables up time, ma’am”).

Denver was clear and bright and dry. Fluffy cumulous clouds so close they looked like they were hung by a stage crew. That wide blue Western sky.

On the drive from the airport into town the driver was a recent Ethiopian immigrant. He told me about the arid deserts in the north, the mountains in the west, the green, humid jungle-like south. The tribes that still migrate with seasons. Some people live in huts, others in high rises. That his country has 84 languages. He is 20 years old and has no family here. Well, an uncle in Atlanta. But the uncle wouldn’t sponsor his visa, won by lottery. A man from Boulder–a stranger and volunteer–became he sponsor. Taught him to grocery shop and prepare food. How to get an apartment and a license. “Everything. He taught me!”

I tell him about where I come from. It’s all shades of green right now with wet, heavy air. The plants grow so fast you can’t stay in one place too long or risk being overtaken. The cherry trees just finished and even in the city you’ll get a bit of honeysuckle on a breeze. Even green in the river. The white arches of the bridges. Flat and wide and laid out hub-and-spoke by a Frenchman. Did I mention the green? It’s beautiful. Did I mention the wet?

This is just to say I love talking to strangers. Rather, I love talking to people who think I am a stranger. I believe myself to be one of the most neutral-looking people in the world. New people (of the old-person variety) often mistake me for “my daughter” or “my daughter’s best friend from school” thirty years ago. My features are muted but somehow familiar, a perfect surface on which people can project whatever it is they want to see. It feels so good to be a blank thing. No sad story, no grief, no cancer.

So that is how I operate when at large. But my kind and interesting taxi driver leaves me at the hotel. I’m up on the eighteenth floor looking out at the Front Range beyond, the city below. Big steel buildings and red brick frontier town storefronts. I could have gone and found my people then. But I didn’t. I stayed in that gorgeous hotel room and skipped dinner and stared out the windows and took pictures of my feet for the next twelve hours. I was scared.

After a refreshing four hours of sleep, I met the day. Did I go to the run in the sunny cool morning with my CancerCon peeps that I probably would have loved? No. I had feet watching that I wasn’t through with. Finally, I instituted some discipline. No morning coffee until I registered at the convention. I hit the lobby within the hour.

How can I describe the feelings. The jelly insides, swollen chest, weeping like a coming-home-soldier feelings that I got when I saw the words “Stupid Cancer” projected in three-foot letters above the main desk in the lobby. Listen, I was sure that the stigma of cancer was long vanquished by The Komen Foundation, pink juggernaut. And getting cancer may be a thing you can talk about much more openly now that there are employment protections and general acceptance and sympathy among much of the American public (colon cancer, anal/rectal cancers, and testicular cancer, and lung cancer all have significant barriers to openness). But as I’ve recently been made aware it’s not just me–survivorship is the long, untold tail of cancer. It is different but perhaps more difficult than the acute treatment stage. So, like I said, when I saw those three foot letters and knew this was me, in public, walking under that projection, well that was the feelings above and the first cry.

I cried when I got my badge, when they cheered for me as a “first timer” which I proudly wore on my badge, when the volunteer checking me in leaned over that folding table to embrace me. The red lanyard that held my badge identified me as “survivor.” I walked around stuporous. Scanned for other red lanyards. I spent a long time looking at a line of five foot high posters with pictures of young people, men and women, different colors, different sizes, different cancers, but all my peers. They were printed with the slogan “I AM CANCER.” They were beautiful. The people, I mean. The posters were great, but the people were beautiful.

I met my melanoma sister–see, this would be fine and even funny to say at CancerCon, but I hesitate to write it as I worry someone might find it sad or morbid or worse say something like “aww”–I met her in a patient panel. I was sitting in an armchair in the hall, taking notes and an emotional break, when she passed me. She knew it was me, melanoma me, by these signs. Skin: pale to blueish. Freckles. Eyes: blue. Hair: reddish. Lanyard: red. I wish I remembered the thing I came up with to cross that massive canyon that lies between stranger and friend, but I don’t. Next thing I remember is sitting together and talking about gardening in Colorado. People, always bring an interesting book if you wish to befriend in an introvert. She had a gardening book. Chatting in that rapid, nervous way the same as first dates do, I was like hey if this chick is all I get out of this experience, so be it. I asked questions: how can you move on with your life? What made you want to get married? Do you ever avoid filling up the gas tank because you feel like maybe you’ll die before you can use it all? Burning questions. Questions Siri couldn’t answer.

I’m going to be honest with you; I left shortly after that panel. I was vaguely aware of a need for lunch. I bought soup, put in a bag, and walked the streets of Downtown Denver for two hours unable to focus on any specific thing. I avoided eye contact. I had no discernible thoughts. My brain wasn’t clearing, so I went back to my hotel. I don’t remember what I did there but it began with taking a benzo and ended in a room service bill.

That night my best childhood friend picked me up and took me out. She is a mom. A bit of a mogul. She still thinks of me and texts me every few weeks a “how are you.” When I try to change the subject she steers me right back “No, HOW ARE YOU I said.” She is my one and only. If you do this, send a message once a month to an old friend, maybe one who’s had a rough go of late, trust and believe that you are the single person doing it for them. Trust that they would now take a bullet for you because that is how much it means to be reminded that there is a someone you love out there loving you.

As much as I wished she could wrap me up like a big burrito and carry me home with her to live forever as a child, I knew she had work in the morning. I slept well that night.

I did not make it to sunrise yoga. That was more likely a 6 am thing and less a fear thing. I arrived for the speaker: Julie Larson, LCSW. Five minutes in I bolted from my seat and in the same way the guy that’s about to vomit at a big client dinner runs for a trash can, dove on the closest box of tissues. It was at a neighboring table. After asking to sit, I turned to my neighbor and whispered “I need tissues and to be close to more red lanyards.” He nodded.

The presentation was good. I would say great, but she was telling me the opposite of what I wanted to hear and she made me cry even more. Her message was not, “Bottle that up, no one wants to hear about your stupid worries. Be grateful you’re alive! Why are you so neurotic?” Rather, she insisted, this traumatic thing you’ve been through was hard. It was awful. You are going to feel the pain and the fear of it all. You can ignore it, but it will pound the windows until you deal with it. You have to feel the feelings. “No!” I said to every therapist that’s had the misfortune of collecting a co-pay from me: I don’t want to feel the feelings. I prefer not to.

I have been taught that feelings are appropriate when they serve a purpose. It’s okay to feel nervous before a test because it motivates you to try harder. You can be scared if you’re walking down a dark city street in the middle of the night because you have to protect yourself from rapists. That about it. It’s my birthright to not feel the feelings. My mother is of English coal mining, farming people. We are world renowned self-medicators. My father traced his ancestry to the Mayflower. They’re known for a lot of things, those puritans. But not feeling feelings. That DNA taught me survival tricks like frigidity and wild paranoia.

There was a point when the speaker brought several survivors up on stage and talked with them, Kathy and Hoda-style. The first young man had a yellow shirt and a personality so sunny that I though oh, he’s a glass-half-full person. I’ve heard of them! The impression left me unprepared for the point in his story in which he finds himself on the floor of the bathroom, weeping, and praying to God for death to take him so he won’t have to continue to walk this path. His mother told him to keep going. Not a dry eye between my two.

You might remember me asking Siri what to do about my wish to give up. She told me some Bing search results.

I buried my head in my lap trying to muffle, but a sobber’s shuddering back is a dead giveaway. My kind neighbor asked me if I was okay. I lied but I’m no good at it and there was god/fate/luck coming in again. He told me he was 10 years out, a teen at diagnosis. It didn’t occur to me to say anything even close to “I’m sorry.” I think I went with “wow.” I felt a bit of envy at how well he seemed to have shaped the pieces of his life. He had been in the dark feelings tunnel that I still had to explore. I asked questions as wide ranging as what was your major to how do you ever trust anything or anyone in the world again in your whole life?” The latter was helpful. He said for him, it turned out to be more trusting his body than anything. That that took six years. I heard other survivors and advocates mention this—the long road back to trusting your body. Before CancerCon I didn’t even conceive of the fact that most of my trust issues stem from being unable to live in peace with my body.

But what does that mean, trust your body? Is this some sort of eastern thing? No. You go to sleep every night in faith that those lungs inside you, that respiratory drive, will keep you breathing. The heart, lub-dub, will pump and perfuse those kidneys and for certain those kidneys will filter and wake you up with a full bladder but, thanks urethral sphincter, no pee on the bed. Ever since you learned to ride a two wheeler you’ve remained upright, balanced, and moving forward. The Krebs Cycle goes on being round and your DNA is transcribed and copied and edited to correctness by those adorable transcriptases and you build new proteins and cells.

Until your body betrays you, and not just in a little pee on the bed way. Not that tedious, frustrating way that aging causes your body to betray you. No, full on in your prime one day, the next you’re signed up for surgery, radiation, chemo and/or immunotherapy, in an effort to preserve your very existence. Who was minding the store while this happened, corporeal self?

During a live performance of the program This American Life, in the last public reading of his work before his death from a sarcoma secondary to the radiation used to treat his post-college Hodgkin’s Lymphoma, David Rakoff described this as “Everybody loses ability as they age, if you’re lucky, this happens over the course of a few decades. If not. Well.” Well, it makes you real angry.

I am not done with my tremendous anger with my body. I get pleasure out of subjecting it to the kind of swimming that hurts. Running like I’m being chased. I can’t be bothered to feed it. I bathe for the sake of others. My cavities don’t faze me anymore. I’ve begged to have teeth pulled but I can’t find a dentist sketchy enough to agree to my desire to pitch as much of this flesh and bone as possible into a biohazard bag bound for the incinerator.

It’s terrible to speak of. But it’s not terrible to live. There is neuroscientific research describing the phenomenon of people in moments of crisis feeling as though time slows. They experience their environment frame-by-frame, sometimes with an outside of themselves perception. The theory involves the amygdala and a bath of chemicals released creating a record in our memory much more rich in detail than the one we use to drive to work or half listen to our children’s whining. The slowing is an effect created by our excited brain’s unlocked superpower: hyperarousal. It is a disorienting sensation and not at all unpleasant. I feel at the conference that I am in the throes of this excitatory state. It’s like drugs, mildly hallucinogenic. Terrifying and wonderful. Some things are permanent engravings in my consciousness: the close clouds, the smell of the soup I couldn’t eat, the dry blowing snow, the contours of the face of the man at the table who comforted me.

I haven’t known how to describe my experience at CancerCon. My biggest admission was that, according to my itinerary, I barely experienced CancerCon. I flew all the way to Denver and I attended only two programmed events. But I walked around stood beside and breathed the same hotel air as my compatriot survivors. I watched like a tourist. I wore a red lanyard in front of others. I was a cancer survivor in public. I talked to people. Even if one of those people was a Golden Retriever.

I can’t narrow it. The experience is everything from collapsing at diagnosis, soldiering through treatment, walling off through years of survival, to this new CancerCon-induced era of hallucinogenic awareness. I’m trying to consolidate selves. The blank space I retreat to and the glass case of emotion I’m trapped in. Slowly unwalling, having faith that like a course of multiple powerful antibiotics new people and old friends and my own courage will be strong enough to break down emotional calcifications. Writing helps too. I feel like I’ve made a lot of progress.

Absolutely none of my life is a curse. Not my cancer, not the husband I lost after my life crisis battle style proved incompatible with his, not the infinite nights waking up at three AM in cold sweats. I’ve seen more sunrises (literal ones) in my survival years than in all prior years combined. Sunrises are beautiful and you are insane to get up just to see them, but if you’re already up? What a gift.

I hear this from the sick I take care of day-to-day in my work as a nurse, and as a patient I do dare affirm: what you need will always show up. This is the non-believer’s way of saying “the lord provides.” I am fine with both. In fact, I am fine with whatever it is that is getting you through life’s gauntlet on a mission to heal or be healed. For me I follow my gifts in time of dire need backward like a trail of bread crumbs: CancerCon, a fellow survivor reaching out, a psychology built to protect me, a nurse friend recommending an advocacy group. Twitter. The lord/fate/luck works in mysterious ways.

Happy nurses week my people of the people.

Here is what I know about nurses in year two of my practice: We are the strongest threads in our community quilt. Binding the diversity of incomes, ages, and cultures together with help, healing, and unconditional (sometimes tough) love.

We can simultaneously hold a cynical view of our fellow man and have the deepest reservoir of hope in humankind. That is to say we will complain bitterly while suffering twelve hours of abuse by a certain patient, and then stay four more hours to see them through when their condition deteriorates. We need to see them through.

If I am your nurse, you are my very own one. I will protect you, I will defend you, I will advocate for you. I’ll go toe to toe with the provider who endowed my hospital if I feel you are being hurt. If you need it, I might even bring you secret coffee from my very own stash. You must know—it is to you I will always be true. Not because you’re nice, though please consider being nice, but because you’re mine. If the building caught on fire I’d sling you over my shoulder and carry you down the stairs. (This isn’t policy, just a metaphor. Trust we have better evacuation plans). I’m not special. I’m “just a nurse.”

I’ll recognize you when I see you out in the world and under light less harsh than hospital fluorescents, but you likely won’t remember me. I don’t need you to. I’m one of many clad-alike interlopers palpating and auscultating and delivering medication. Our time together is sacred and secret. I’ll acknowledge your return to health in silence, with a smile that is overjoyed to see the color in your cheeks. You’re back at work or running the aisle of the grocery after your wild, beautiful children. My chest fills with pride as I think: She’s one of mine! Look at her, so well!

I don’t know any nurse who feels differently. We are for patients. What a noble group of people to share a name with. Every day I find time to do a little jig of joy to celebrate my membership in this club of tough, tender advocates for humans. Doing work that cares little for glory and much for justice. It’s the only gift I want.

Happy nurses week to all of you, you magnificent beings.

A few words mustered on AHCA

I want to credit the journalists, academics, and my fellow healthcare providers who continue to write in this inhospitable-to-truths environment. I don’t know how you do it.

I’m hotter than a billy goat in a pepper patch. I can’t put it together. I can barely speak.

On this blog I’ve made the turn from facts to feelings in the last 100+ days, likely because facts seem to have suffered a fatal blow in this unrecognizable version of the world.

Here’s my feeling: I just left CancerCon (post in process), a group of many hundred sparkling, talented, mutually supportive young adults with cancer. Every last one of them contributing and (this is my bottom line) not any less human than before they got sick. THROUGH NO FAULT OF THEIR OWN. I’m one of those hundreds.

The Affordable Care Act was my civil rights legislation. Its “replacement” is the repeal of my and my legion of patients hard fought and nightly worried over civil rights. To adequate care. To freedom from unnecessary physical suffering and premature death and disability. Freedom from fear of sinking ourselves and those who love us into destitution to pay for our care. That’s all I have for now.

Am I less than my healthy counterpart? Is my humanity so easily disregarded by my country?

Great achievements in public funding

This past couple of weeks have worn us health policy people down to sad little nubs. In this climate, where cruel and wildly irrational plans are proposed then taken for serious, scored and picked apart by award winning economists…Well it’s no impossible task to pull some data together showing in fact old people do deserve food and disabled children deserve health care. Mounting a well reasoned, sound argument against such insane hypocrisy is indeed possible, but exhausting and futile. Crazy doesn’t listen.

So where are we then? I’m at a loss of how to write about any of the proposed cuts, the losses in insurance coverage for the most in need. Maybe I’m overworked and underfed and teetering on the edge of freaking the freak out but I can’t bring myself to mount a statistical argument for basic human rights.

So I’m going to tell a story instead.

It was the late 1950s and everything was in black and white. A little boy who had been born a surprise was eight years old in Phoenix, Arizona. His early memories of horseback riding in the desert with his two older brothers were of always, always getting the donkey. He swam like a fish. He liked science and had a microscope with real glass slides. He had a nickname whose existence he would, after escaping to college, refuse to speak of (it was Kelly).

The boy was the baby in a family whose two oldest had already fled the troubled scene. He was a native born go along to get along. When the joints in his hands became hot and painful, he didn’t mention it. For some unknowable amount of weeks he would struggle to turn door knobs, button his dungarees, and comb his Beaver Cleaver side part. Finally, unobtrusive Kelly had to ask his mother to help him turn on the water for his bath, his hands stubbornly refusing to form a grip.

He was shopped around from doctor to doctor in the desert town. A number of perplexed specialists later my father was referred to The National Institutes of Health in Bethesda, Maryland. He was all wrong for his diagnosis. Lupus presents in women, not men. In adults, not children. All the same he was enrolled at NIH and became a patient at the Clinical Center. Without prior cases for reference, his initial life expectancy was in the range of months.

Lupus and its treatment took a toll him. At high doses the steroid bloating turned him unrecognizably moon-faced. It robbed him of physical growth. He’d never catch up to his sister and brothers, all between 6′ and 6’5″. But in defiance of his early death sentence and thanks to that Ellis Island of medicine that took him in the little boy would go on to live for months, then years, decades, and into the better part of a century. And NIH would have one hell of a longitudinal case study.

The boy went back to Catholic school where he practiced disruptive anti-authoritarian behaviors on the Sisters. He survived college despite a heavy smoking habit and special trick of putting out his cigarettes by balancing them on their filter end and waiting for them to burn themselves out. He went to work in Washington, DC and happily complied with the dress code by wearing a comically wide tie that fell several inches above his belly button. Beating the greatest odds since that childhood diagnosis, he found the woman who would be my mother and they fell in love. Exactly halfway through his medical miracle life I was born. Over the next years came my brother and my sister.

NIH saved my family by saving my father as a child. They did it again forty years later when as a teen I was diagnosed with lupus, too. A decade after that they were the ones who had funded the studies and knew the science and armed me with the best possible interventions as I ran the gauntlet of the first generation of women to attempt lupus pregnancy. I had a healthy son.

They have all of my gratitude and admiration, several hundred gallons of my blood, and the full sequence of my DNA. I owe them way more.

Thus endeth the story.

My fierce loyalty to the NIH is not only about the comprehensive care of the Clinical Center or the heroic research. Rather, I’m loyal to this national institution dedicated to protecting public health and lessening the burden of human suffering and disease. The clinicians and scientists who make NIH their life’s work are the smartest people in the world (I say WORLD because they’ve come from all over the planet to be here). Even more stunning, they are giving their gifts to public service. I don’t believe that I am entirely naive in saying the greatest dividends on investment in NIH are contributions to the welfare of human kind. Sure, I could put a number on this. But I told you I’m not doing statistics today.

PS- Sometimes I sit in the NIH cafeteria and pretend to read a book while listening to you geniuses talk about your work. Star. Struck.

Thank you for marching. Love, Me.

I knew by last Wednesday I wouldn’t make it to the march. My six-year-old had had a fever for 3 days, I was calling out of work and trying to get him to the doctor, and my nursing work schedule included non-negotiable 12 hour shifts on Friday and Sunday.

I was desperately sad when I woke up on Saturday and, like every normal human, pulled my phone from under my pillow and started scrolling twitter. All these beautiful women I love and admire, my friends! Together on The National Mall with their children. Arms linked, posters cutting, experiencing history’s counterpoint to Friday’s stiff and depressing presidential inauguration. And here I was in my PJs. A bad mom for not bringing my son to the momentous even, a bad woman for skipping the rising up of the sisterhood.

But wait, forget that guilt. You marched for me. I’m a single parent of a young child. I struggle with being a mom without a partner or adequate child support, a professional with no job flexibility to accommodate my role as parent, and due to the unaffordable nature of childcare lean on the support of my own mother to help raise my child. Also, I’m a cancer survivor and the ACA keeps me covered with health insurance and free from the fear of medical bankruptcy. Last, I am fortunate in this time of health professional shortages to work with a diversity of talented professionals from all over the world. I worry that through fear mongering or bad policy I will lose these irreplaceable nurse, tech, and doctor colleagues caring for our sick and elderly.

So to everyone who marched–I couldn’t be there on Saturday to show my support. I am forever grateful to you for marching.

Warming the engine/Thank god for Oliver Sacks

For a while now I’ve been scribbling notes and spending long hours before sleep and short minutes before getting out of bed figuring on how I will tell the story of my absence. Where I’ve been (literal and figurative).

I’m not consuming much fiction these days, but can slide through clinical tales like a hot knife through butter. So to warm me up a bit, and to remind you that I still think and breathe, I’ll share a passage from the late Oliver Sacks’ book The Man Who Mistook His Wife for a Hat (from the introduction, Losses):

…But it must be said from the outset that a disease is never a mere loss or excess–that there is always a reaction, on the part of the affected organism or individual, to restore, to replace, to compensate for and to preserve its identity, however strange the means may be: and to study or influence these means, no less than the primary insult to the nervous system, is an essential part of our role as physicians.

This is a perfect prologue. You know I had cancer. And that is the least interesting part of the story I wish to tell. The compensating, the strange and destructive means by which I strive and fail to preserve my identity is where the drama lies. And that, my friends, was completely overlooked by both me (RN) and all of my care providers.

Where is Oliver Sacks when you need him? In print I suppose. Thank god.

Cancer: The Emperor of All Maladies and My Cancer: The Wrecker of All Normalcy

Video: Cancer: The Emperor of All Maladies Trailer | Watch Cancer: The Emperor of All Maladies Online | PBS Video.

You’re all watching this, right? You’ve already watched it?

Good. I need to re-watch a time or two more before I give you my bullet points, but wow.

Hot off the press for my policy class about being a patient and looking at treatment options and statistics. No good choices yet.

The Fear & The Data

I’m the kind of patient who wants to, no insists, on knowing the numbers. When I was diagnosed with melanoma a little bit more than a year ago the sentence after “the tumor is malignant” was me asking “how deep.” I already had the tumor staging chart in front of me. That’s not true. It was dark, I was outside, and I had that thing memorized. My tumor was staged 2B, my stats are 60% survival at 5 years. I absolutely consent to a wide tumor excision and sentinel node excision. I am unable to undergo the recommended course of immunotherapy (12 month course) for adjuvant treatment that would have got me an additional 7% survival, due to my comorbid Lupus. I look for second and third and fourth opinions, and find a reputable oncologist with specific experience in my sub-type of melanoma who recommends adjuvant cutaneous radiation. The doc, my radiation oncologist, and I pull the best studies we can and make a good argument for radiation therapy in reducing recurrence of melanoma at the site (and more than 80% of melanomas of my subtype reoccur at the site) by 12-15%. SOLD! For $6,000 out-of-pocket, 6 weeks of my life, and 2 months of healing third degree burns and radiation toxicity. Steep. But fear is a powerful motivator. And fear of abandoning your young child? I mean I don’t have to tell you.

Would I have done the radiation for 5% reduced recurrence? I am aware that radiation can cause late malignancies. But REGRET. I could never forgive myself a lost chance to raise my child. Despite my lack of faith in integrity of studies in general, my non-surprise at aberrant results, and my belief that as a young person I may have more bounce back in me, I cling to the numbers with fear and with hope. Some people see themselves as the exception. I can’t help but see myself as the rule.

Making good news sad (it’s what I do) and a poem/incantation

I am cancer free, 1 year. A reprieve lasting who knows how long. Feeeeelings.

This week I was spared the ax and I saw it come down on strangers. Have I mentioned how odd it is to be consumed with concern for your own mortality when the study of mortality is consuming your days?

Borrowed from Micheal Swanberg, the only guru I’ll accept (if he’ll have me):

Let me respectfully remind you
Life and death are of supreme importance
Time swiftly passes by and opportunity is lost
Let us awaken
Awaken, take heed
This night your days are reduced by one
Do not squander your life.