Friendly neighborhood sick person weighs in on health care debate.

When I used to freak out about losing my health insurance/access to care, not being able to afford medicine, I always pictured my parents losing their house to pay my medical bills. It was the greatest loss imaginable. In the past months my catastrophizing has changed. Now, my mother won’t sell her home, cash out her retirement. I fantasize about dying from lack of care. If my cancer comes back, if I can’t keep my job, if I lose my insurance and I can’t afford to get treatment–I won’t seek care. I’ll die of my illness.

If anyone every told you I’m stubborn they weren’t lying. I indulge this fantasy of martyrdom to my hard-hearted country.

I need to express the psychic weight that the debate over who deserves what coverage burdens me with. Watching the monetary value of my continued American existence up for debate just a few miles from where I live. I cost healthy people too much. My debility or poverty disqualifies me, abdicates rights I thought were mine… life, liberty, something else… but yea, life. Not that.

In my hospital we have special education high school students working as volunteer helpers. Not everyone welcomes them. They are different people and require a slight adjustment in communication. They require accommodation.

They came to the hospital to work with assistance of a career coach and the support of our unit manager. They are kind and interesting, alike to most young people. Tremendously helpful, alike to most young people. Restocking supplies, lending a hand to grab a wheelchair or a drink for a patient, going to the waiting room to track down someone’s elderly family member who won’t answer a cell phone. They complete tasks that keep everyone in the unit moving forward. Days that I’m swamped, they keep me afloat.

The myth of the productive citizen baffles me. I’ve met a lot of people. Strangers coming out of anesthesia tell me dark secrets. No one conforms, not all the time. We are a big interdependent mess. To define productive and make it the measure of value is a terrible effing idea. This ideal of a completely independent working class American is at the core of the repulsive rhetoric I see daily.

What we are capable of is influenced by what we are told we are capable of. The political dialogue, a demoralizing debate over who is worthy of access to care, corrodes the potential of the precise people that have renewed American greatness again and again. The striving poor, immigrant, person of color, victim of circumstance. The young. Mounting arguments to deny the very poorest, the sickest, the youngest among us the scant safety net of Medicaid and strip us of legal protection to not be discriminated against due to sex and preexisting conditions, is undeniably passing judgement on who deserves healthcare. These groups of people, my people, have no chance to acquire health insurance without the protections set in place by Medicaid and the Affordable Care Act. To be without insurance is to be without access to care. The message is this: you are uncared for. To be perfectly clear, you are left for dead.

The health care debate is deeply personal. The abandonment of my cause, my cause being the pursuit of a productive and healthy life, by so many of my fellow Americans. My president, my representatives.

Since my diagnosis at age seventeen I kept my lupus a secret from most. A learned behavior from my father who shared the same diagnosis. He came of age in this country, a sick person in a time before the Americans with Disabilities Act. The fear of being found out, losing out on educational opportunities, jobs, insurance.

I lied on my college applications. I lied on my job applications. I’m not sure if you’ve noticed, but there is a box to check for “I may require reasonable accommodations” i.e.–I have a disability. NOPE. Nope. Per dad’s advice, cross that bridge if you come to it. You don’t need accommodation. You can pass. I can pass for healthy. I’ve never had trouble getting a job.

But I was ashamed. Sneaking around in the shadows will do that to a body. Fearful of being judged as burdensome. A waste of the world’s resources.

To experience the birth of the Affordable Care Act and its protections after a labor so long and fraught was elation. Immense validation. I was hearing from the highest office in the land that my worth, my potential, was not degraded by chronic illness. It’s no coincidence that it was in those heady days I returned to school and became a nurse. I chose a challenging career in a field of service. I was pushed, encouraged to dedicate myself to progress personal and political. In no small part because of the leaders of my country put all the chips on the table to codify the belief that health care is a human right.

Since the ACA passed, I’ve checked the “accommodations” box. When I go to an appointment, I don’t lie. My coworkers no longer think I am hitting the dentist’s office monthly. I can pass, but I need everyone to know what a disability looks like. Which is, in my opinion, human. The messages that came from President Obama, from my representation, from advocacy groups all over the land made me feel like it was okay to exist as I am.

Permission to exist is a powerful thing. It isn’t hyperbole to say that the Affordable Care Act is my own civil rights legislation.

It despairs me to hang on as the pendulum swings against it. But hold on, it matters. Keep saying it, no matter how ridiculous it feels to say, children and women and the sick and the elderly all deserve equal protection under the law. Our nation, and me, well… our lives depend on it.

PS- Somebody make me a bumper sticker that says “KEEP YOUR HANDS OFF MY OBAMACARE”

Poems for the MRI

No matter how much time I do in the MRI I always go in a nervous wreck. My favorite writer and spirit guide David Rakoff (whose death nearly three years ago from a sarcoma secondary to radiation treatment for lymphoma in his 20’s has left the saddest and most fearful absence) gave some fantastic advice about surviving time in “the tube” in an interview well before I had regular dates with the scanner. I’ve taken it to heart. Keep your eyes closed, breathe, and recite your favorite poem to yourself.

As a new nurse let me remember that sending a patient for scans will become routine for me, but it will never be for them. Let me validate fears and take time for words of comfort and advice (eyes closed, someone is always watching out for you, it gets warm in there, it is very loud, think about what music you’d like to listen to, know you are safe).

David Rakoff recites his favorite poem “Letter to NY” by Elizabeth Bishop:

I recite mine “Birches” by Robert Frost (one exhausted take, please forgive):

Neil Gaiman recites “Jabberwocky” by Lewis Carroll:

In my opinion, a memorized poem is one of the best things a person can have. Useful in any number of situations.

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.

Emergency Landing.

Almost a month and no posts?! My rants have been diverted into papers for a phenomenal policy course I am taking this semester and my links to articles aren’t making it past a retweet.

So here’s my word picture for you: I am emergency landing an Airbus A320 containing all of my adult life on the Hudson River. We hope to hit the water and begin evacuation in late April. And yes, in this metaphor I am Captain Sully and when I nail this I will get to go back in time and sit on the stage for the first inauguration of President Barack Obama.

School is boiling me alive by degree, I’m selling my house, separating from my husband, searching for a first job, squeezing in an MRI here and a trip to NIH there, and hoping it all settles out in time to give my beautiful kid a fun summer break of swimming pools and tee ball before starting kindergarten at a (please God let it be halfway decent) school. See how I used the capital “G” there? That’s right people, there are no no-job-no-home-no-partner having atheists trying to finish nursing school. We’s back on speaking terms, me and Gosh and Jeepers.

But seriously, forgive me my absence. I’ll post some of my writing from class as it applies. Please let it be my belly that hits the water.

EDIT:
My mom has informed me that this metaphor makes no sense. What I’m trying to say is there was a whole series of things I was depending on to bring the end of my career as a student in for a safe landing: a stable household (selling house), a stable income and health insurance (partner leaving and I ain’t got a job), and a plan for school, friends, and recreation for my kid. So let’s think of that stuff as the runway, the landing gear, various instruments… without it I’m depending on my wits, experience, not passing out, and I guess the Hudson would be my parent’s basement.

Dr. Bill Thomas, aging, and de-depressing the nursing home

image

Nobody is excited to be in a nursing home. Same deal for most nurses. In a terrible turn of events, a place with exploding need for professional nursing care is the most maligned of places to work. And if you’ve spent time in one, visiting an elder or maybe a loved one enduring a long recovery, you know why. It’s dense with suffering. Everyone in their own personal purgatories. And the food is yuck.

Borrowed from a chapter in Gawande’s Being Mortal and continuing the theme of the poem “Letters from a Father,” I wanted show off the work of Dr. Bill Thomas, who has gained regard for transforming the nursing home. The man has an earth shattering philosophy: In order to thrive, humans (even sick and old humans!) need something to live for. Life needs meaning. His first nursing home experiment brought in pets of all sort: birds, a variety of house plants, some dogs and cats. The residents were given autonomy, responsibility, and credit to care for them. And the residents thrived (so did the animals and, miraculously, the houseplants) Now you see the connection with “Letters.” Now I’m weepy because it is so simple, people. The needs of humans are beautifully simple.

Dr. Thomas, hippie in the most beneficent understanding of the term, calls his program The Eden Alternative:

What are the other components, what are the other criteria of the Eden Alternative?

Number one, the organization begins to treat the staff they way they want the staff to treat the elders. Very important. Long-term care has a bad history of treating its staff one way, not so nice, and expecting the staff to treat the elders a different way.

Number two, the organization brings decision making back to the elders and to the people around the elders, so that they have a voice in their, in their daily routine and their life. Crucial, crucial to re-injecting meaning into peoples’ lives.

Third, they’ve taken real steps to make the place where people live rich in plants and animals and children. I want the people to be confused when they walk through the door. What kind of place is this? I mean, there’s kids running around and playing and there’s dogs and there’s cats and there’s birds, and there’s gardens and plants and … I want them to be confused. This can’t be a nursing home. Right. It’s an alternative to the nursing home.

And finally, there has to be a commitment to ongoing growth. We believe in the Eden Alternative that even the frailest, most demented, most feeble elder can grow. And that the young person who maybe has a difficult home life or is living on the edge of poverty, they can grow. That the organization commits itself to human growth. And those words, human growth, nursing home, they’ve never gone together before and with Eden Alternative they can.
(source)

From a resident:

“Well, if I want to make things easy and comfortable for everybody, the only thing I should do is die. And having George participate in my care and having other people do the same, calls me into life. It says, despite your losses, despite your limitations, you belong here with us and we want you to stay.” — Nancy Mairs

Poetry Friday

I spent the morning sitting in a sunny spot watching birds at my feeder. Hence this poem. Reading it again now after many years, weepy, remembering being so moved even as a 20 year old kid whose main worry was where the keg at. Before sickness and aging elders became my wheelhouse. I can draw a straight line between this poem and my life as a nurse. I got there, eventually.

Letters from a Father
Mona Van Duyn, 1921 – 2004

I

Ulcerated tooth keeps me awake, there is

such pain, would have to go to the hospital to have

it pulled or would bleed to death from the blood thinners,

but can’t leave Mother, she falls and forgets her salve

and her tranquilizers, her ankles swell so and her bowels

are so bad, she almost had a stoppage and sometimes

what she passes is green as grass.  There are big holes

in my thigh where my leg brace buckles the size of dimes.

My head pounds from the high pressure.  It is awful

not to be able to get out, and I fell in the bathroom

and the girl could hardly get me up at all.

Sure thought my back was broken, it will be next time.

Prostate is bad and heart has given out,

feel bloated after supper. Have made my peace

because am just plain done for and have no doubt

that the Lord will come any day with my release.

You say you enjoy your feeder, I don’t see why

you want to spend good money on grain for birds

and you say you have a hundred sparrows, I’d buy

poison and get rid of their diseases and turds.

II

We enjoyed your visit, it was nice of you to bring

the feeder but a terrible waste of your money

for that big bag of feed since we won’t be living

more than a few weeks long.  We can see

them good from where we sit, big ones and little ones

but you know when I farmed I used to like to hunt

and we had many a good meal from pigeons

and quail and pheasant but these birds won’t

be good for nothing and are dirty to have so near

the house.  Mother likes the redbirds though.

My bad knee is so sore and I can’t hardly hear

and Mother says she is hoarse from yelling but I know

it’s too late for a hearing aid.  I belch up all the time

and have a sour mouth and of course with my heart

it’s no use to go to a doctor.  Mother is the same.

Has a scab she thinks is going to turn to a wart.

III

The birds are eating and fighting, Ha! Ha!  All shapes

and colors and sizes coming out of our woods

but we don’t know what they are.  Your Mother hopes

you can send us a kind of book that tells about birds.

There is one the folks called snowbirds, they eat on the ground,

we had the girl sprinkle extra there, but say,

they eat something awful.  I sent the girl to town

to buy some more feed, she had to go anyway.

IV

Almost called you on the telephone

but it costs so much to call thought better write.

Say, the funniest thing is happening, one

day we had so many birds and they fight

and get excited at their feed you know

and it’s really something to watch and two or three

flew right at us and crashed into our window

and bang, poor little things knocked themselves silly.

They come to after while on the ground and flew away.

And they been doing that.  We felt awful

and didn’t know what to do but the other day

a lady from our Church drove out to call

and a little bird knocked itself out while she sat

and she bought it in her hands right into the house,

it looked like dead.  It had a kind of hat

of feathers sticking up on its head, kind of rose

or pinky color, don’t know what it was,

and I petted it and it come to life right there

in her hands and she took it out and it flew.  She says

they think the window is the sky on a fair

day, she feeds birds too but hasn’t got

so many.  She says to hang strips of aluminum foil

in the window so we’ll do that.  She raved about

our birds.  P.S. The book just come in the mail.

V

Say, that book is sure good, I study

in it every day and enjoy our birds.

Some of them I can’t identify

for sure, I guess they’re females, the Latin words

I just skip over.  Bet you’d never guess

the sparrow I’ve got here, House Sparrow you wrote,

but I have Fox Sparrows, Song Sparrows, Vesper Sparrows,

Pine Woods and Tree and Chipping and White Throat

and White Crowned Sparrows.  I have six Cardinals,

three pairs, they come at early morning and night,

the males at the feeder and on the ground the females.

Juncos, maybe 25, they fight

for the ground, that’s what they used to call snowbirds.  I miss

the Bluebirds since the weather warmed. Their breast

is the color of a good ripe muskmelon.  Tufted Titmouse

is sort of blue with a little tiny crest.

And I have Flicker and Red-Bellied and Red-

Headed Woodpeckers, you would die laughing

to see Red-Bellied, he hangs on with his head

flat on the board, his tail braced up under,

wing out.  And Dickcissel and Ruby Crowned Kinglet

and Nuthatch stands on his head and Veery on top

the color of a bird dog and Hermit Thrush with spot

on breast, Blue Jay so funny, he will hop

right on the backs of the other birds to get the grain.

We bought some sunflower seeds just for him.

And Purple Finch I bet you never seen,

color of a watermelon, sits on the rim

of the feeder with his streaky wife, and the squirrels,

you know, they are cute too, they sit tall

and eat with their little hands, they eat bucketfuls.

I pulled my own tooth, it didn’t bleed at all.

VI

It’s sure a surprise how well Mother is doing,

she forgets her laxative but bowels move fine.

Now that windows are open she says our birds sing

all day.  The girl took a Book of Knowledge on loan

from the library and I am reading up

on the habits of birds, did you know some males have three

wives, some migrate some don’t.  I am going to keep

feeding all spring, maybe summer, you can see

they expect it.  Will need thistle seed for Goldfinch and Pine

Siskin next winter.  Some folks are going to come see us

from Church, some bird watchers, pretty soon.

They have birds in town but nothing to equal this.

So the world woos its children back for an evening kiss.

Now everyone feels bad about the pies.

(Image from CDC)

Happy day after Thanksgiving. Now that we’re all in regret mode, diabetes! This is a slow-motion public health train wreck, amiright? And it’s another marker of race disparity in health… but I’ll save that for another day.

Diagnostic for diabetesHemoglobin A1C>=6.5 OR 8 hour fasting plasma glucose of >= 126 mg/dl OR oral glucose tolerance test of >= 200 mg/dl OR random plasma glucose of >=200 mg/dl.

Super user-friendly.

So diabetes is a clear medical diagnosis to make, but telling someone with a fasting blood sugar of 120 that they do not have diabetes is the wrong message. You either have HIV or you don’t. Diabetes is a disease on a continuum. Even with moderately high sugars the vessels of the fingers and toes and heart are getting damaged. The delicate vasculature of kidneys and eyes is getting all junked up, and pancreas… oh poor pancreas you will never be the same.

So it would make sense to do some intensive nutrition education for people that fall into that pre-diabetic category, you know, maybe keep them from become full-blown diabetic? As it stands, Medicare does not reimburse (pay for) nutrition consults until you have the official diagnosis of diabetes. So we are giving nutrition education to people in the hospital after they have had their toes amputated, between debridements of wounds that won’t heal, and in dialysis while they wait for a kidney transplant. These are miserable, life-limiting procedures. All of which are way pricier than some front-end nutrition education. And the cost of diabetes has increased 41% over the past 5 years.

My mom falls into the pre-diabetes category. I write little lists and send texts and talk to her on the phone about how she is managing a blood sugar that is next door neighbors with diabetes. Based on my very limited knowledge of nutrition (nursing schools could really fortify this part of our education), here are some of tips I’ve given her: First, 5 a day, lots of fiber, and minimal processed foods. Look for added sugar in all all foods, especially processed. If a product is labeled low or non fat, you can assume that they replaced that fat with sugar. Check the label. Also, exercise helps your cells metabolize sugar, bringing down your blood sugar. Even if you don’t lose pounds. What else can I do? I’m genuinely asking.