Just breathe.

It starts when I enter the room. How many words can the patient tell me without taking a breath? Is she leaning forward, hands on her knees? Can I hear her wheeze from across the table? Can I see her effort to breathe? Is her face blue, are her fingers clubbed? I am always watching. The stethoscope only amplifies what I can see.

First, I splay both hands across her back. “Breathe.” I feel the air moving. Next, I tap lightly in demarcated fields, listening for the hollow resonance. I feel for fremitus, asking her to vocalize a vibrating word as the sides of my hands travel laterally down her back, stepwise. Only then do I take the cold circle, universal symbol of the doctor.

My stethoscope hangs without weight around my neck. I can unwind it in a fluid motion, it tangles itself like a necklace, I am always entwined by my crescent of silver and single tube, encased in blue, leading to a bell and a diaphragm. It looks like a caduceus without wings. The snake head uncoils into my ears. My hand is on her shoulder now. I don’t have to count the breaths; I can feel them. If I pay attention, my eyes will close and my head will sway forward as the ear pieces find their natural places in my canals. They are transmitting sound. “Breathe,” I say. “Relax,” to the patients who await my signal to exhale. “Through your mouth,” I say. It’s louder that way. And I am listening to the inside of her body.

I am listening to the inside of the body. It is telling me things. My patient knows these things, but she doesn’t have the vocabulary to describe to me what is happening. All the viscera are innervated. The viscera are terrible historians, as we say. What we mean is, they speak a language we still do not know. Instead, it is my exquisite privilege to explicate this poem, through every sound and every silence. 

The poet teaches the doctor to listen, and the doctor teaches the poet what to listen for. Every day, I am the scribe to my patient’s story, to my patient’s body’s story. I call these findings “subjective” and “objective.” I am saying that my interaction with the body is neutral and that everything I report is without bias. I am saying that the body, itself, has no leaning and no dramatic metaphors.

I am lying. 

Nothing that is human is neutral. It's like pain - they say pain is the 5th vital sign now (on a whim, and to have something more to discuss with a preceptor, I suggested mood as the 6th vital sign. Last week). There are a lot of different "scales" for pain - there's the one with the frowny faces and the one with the numbers. Some people say 'on a scale of 1 to 10, 1 being no pain and 10 the worst pain you can imagine..." 

"7" the patient says

"but now it's down to a 5"

We've got them trained well. (Personally, I scale pain from 0 to 10 for patients). The MAs ask, too, what the "acceptable" level of pain is. Medicine is getting so pc. We say - and this is true - that there is no guarantee pain will ever be zero.

So it's subjective. Totally subjective. And I used to deride this - okay, sometimes I still do. You look at the patient's face while you're palpating. One says "10" and is fighting to keep from screaming as I lightly touch their abdomen. As I'm just percussing/tapping. And another says "10" calmly, abdomen soft, nontender/non-distended with positive bowel sounds. So in my 'general' statement i'll say NAD for 'no acute distress.' 

And am I judging? I'm trying not to. I'm trying. But seeing those presentations - which I've seen - I instinctually guess which one is in more pain. And there are signs "related" to pain. That much pain, the heart rate should be up. The blood pressure should be up. And the respiratory rate should be up. Then again....

does it matter?

Okay, it's a culture of respecting high pain tolerance. Of course I'm part of that. And this isn't just talking to other friends about pain/illness, and feeling like "wow, that person is REALLY sick and they're not complaining at all!" or, "that person just has a cold and is complaining and I came to work when I was wayyy worse..." We do that. (At least, I do). This is seeing sick people/people in pain all day, every day, listening to people talk about chronic pain, injuries, acute things - and you see people with the exact same pathology and totally different reactions to it. I've seen this with procedures - three endometrial biopsies in a row, exact same procedure, exact same doctor. The women were about the same age, approximately the same level of health. One was totally non-chalant. Another was visibly uncomfortable and flinching. And the third was screaming. 

There was the patient with cancer. Every day I saw her, every day she smiled, said she wasn’t in pain. This was a woman with cancer metastasis all over her body. Dying. Young. Cachectic. On chemo. With platelets so low we transfused her every other day, and with that, her platelets were 1/30^th that of a healthy person’s. And so the one day I went in that she did say she was in pain, (a little), that she was fighting not to throw up or cry or….

I almost backed out of the room. I was terrified. For her to be complaining of pain… I couldn’t imagine how bad it was. Unimaginably bad.

Chihuly exhibit. I'm going to continue adding random photos...

But does it matter. Pain is subjective, but each person is a scale unto themselves. Other things affect pain – mood, situation … everything. But the person is the patient and you’re taking care of one person at a time. Only. So in that situation, the only scale that matters is that patient’s scale. (should matter).

Sometimes, though, it is important in management. Does the patient need to be hospitalized or can she go home? Is this IV or oral medication we’re going to give? And how much? And do we need a CT right now, are we sending the patient to the ED? What’s our threshold of suspicion for emergency, exploratory surgery?

This is why medicine isn’t science. There are things we have tests for. There are things we don’t. And you don’t run every test every time, because…it’s excessive, it’s expensive, it’s not always available, it can take a long time, they’re not all that sensitive/specific, and….there can be more harm than good. CT for everyone? No. Even chest x-ray for everyone? That’s probably the most common and benign one. …No. (could post the letter from UCSF professors to the TSA here. Not terribly relevant, but sortof. In terms of unnecessary testing and doing more harm than good. Medicine doesn’t do it. Medicine does too much of it. Don’t do it and hide behind the medicine in order to say it’s safe and just as benign as what doctors do. Doctors aren’t benign. )

 Hiking in Kenya. I wish I remembered the exact name...it's in Western Kenya, not far from Kisumu, and pretty much exactly on the equator. There are little remnants of the equatorial rainforest over here...it's almost the exact same latitude as where I lived in Cameroon, but it's mostly Sahel, now. Scrub. 

Easy science is derided as “physics for poets,” and – to scientists or to a community at large – poetry is esoteric and “too hard to understand.” To poets, science is inflexible, uncreative, and daunting. Science makes itself out to be intimidating. And, personally, I don’t count science libraries as “real” libraries, and I go there as little as possible.

But medicine isn’t science. In medicine, there is judgment. There’s not supposed to be – but there are tumor boards and transplant boards, and as hard as they try to be objective…they’re just not. I saw a patient in the ICU – 39 year old in kidney failure, I think – who had been declared “futility of care.” Takes a few doctors to do that – at least two – to say we’re not going further, we’re not offering anymore “life-saving” or “heroic” measures. I guess. *I haven’t looked this up. It’s not an official definition, I’m approximating – but it’s pretty close. Anyway, thirty nine. And why futility of care, why wasn’t he on the transplant list? Lack of social support. That’s a criteria – hard to get through recovery and post-recovery for transplant on your own. He was married. But his wife was a polysubstance user – aka, in normal parlance – junkie. So no transplant for him.

Medicine speaks an entirely different language, and not just in medical terminology. Medicine turns commonplace English words upside-down.

“How is the patient mentating?” Thinking. Are we judging? Yes. Cognition, alertness and orientation. We are also judging the patient’s relationship to the world, as if we know how to govern that.

“Is the patient’s sensorium intact?” Is the patient hearing voices or seeing things that other people do not see? Is the patient feeling things that aren’t there?

Medicine auscultates the heart, lungs, carotids, and abdomen, rather than listening.

Rather than mildly sad, a patient is probably dysthymic, and if they feel normal, they are euthymic. “Thymus,” to ancient Greeks, meant heart, soul, desire, life. In adults, it atrophies, and in opening a cadaver, it is almost gone.

~j

Having Patients

       It’s a possessive thing. They are my patients, and I’m their…well…sortof doctor, for lack of a better word. But in my clinic (yes), we run it exactly like intern/resident clinic. I do history and physical, assessment and plan, discuss this with the patient, do education, etc, counseling, etc, then I go write up my note, write out the prescriptions, fill out lab sheets/imaging/referrals (if I want that), then I present to whatever attending is present. We go over the plan, they mostly sign and maybe change a few things, then we go see the patient and I re-explain everything, add/modify if there are changes, and that’s it. My patient. My patient gets a follow-up appointment with me.

            Or, did. It’s been six months (this is a different sort of medical school program that I’m doing…but…not terribly relevant right now). This was the first week I referred patients to people other than me, made them appointments with “other” doctors (as in, the others are doctors. I’m not lying. My patients know I’m not a doctor, not yet. But they see me as one, because I am providing the care).

            I remember the first time a patient asked me how I was, after I started in with my usual ‘how are you doing today,’ etc. It meant a lot. And it’s happened with most of them now. It means that…it’s not a one-sided relationship. Over time, I’ve learned and thought about how much of myself to share. Personally. No one’s asked me questions I didn’t feel comfortable answering. And of course I know eons more about them. But I’m there, too, and they want to know how I am, how much later I’m working, and to tell me that they like my shoes (the latter, actually, has happened several times).

            I remember the first time a patient hugged me. I wasn’t sure how I would feel about that at first. But…again, it’s always been appropriate. And it always comes out of an overwhelming…relief, sense of partnership, sense that they’re not alone in this and that someone is supporting me. There’s the patient’s wife who asked if she could hug me – she’d come in close to tears, so much going on, so much to manage with her husband who was so sick with so many different things. I helped, in small ways. And it was one less thing for her to worry about. Now, she hugs me everytime, as does her husband, and I look forward to seeing them and hearing about how their family is doing. They’re sad this is ending – and so am I. So am I.

This is where medicine is different – there aren’t that many jobs that are emotional, not that I know of, outside of healthcare fields. I not only know the story but I’m involved in it, involved in trying to improve it, shape it, and just being there to listen when there’s no one else to do that at the moment. I don’t know if I realized quite how much trust patients put in their doctors – not in all doctors, I guess. So many times it’s “have you been able to talk to anyone else about this?”

“No.” (says the patient).
“Do you think you could?”
“I don’t know/I’m not sure.”

Is it because I’m “objective”, “anonymous”, HIPAA compliant? Yes. And I am. But I also carry all of the stories. And I look forward, in each encounter, to learning more about how they enfold.

I was jubilant – out-loud, YES!!!! – in the residents’ workroom in clinic, the other day, seeing my patient’s lab values online. Cholesterol DOWN. It meant that, together, we’d done the right thing. Same thing when handed a chart with my patient's vital signs of the day - NO MORE HYPERTENSION! I go in beaming. (There are, of course, the flip-side stories. Not to write about today, though. Not today).

(No particular reason for the above. Just that...wildebeest are cool. Kenya, Maasai Mara, 2008). 

It’s funny, I wrote a blog post on a now-so-defunct-blog-I-don’t-remember-the-address with a similar title to the above. Six years ago, my first clinical experiences. College. I’ll repost that, just because it’s an interesting contrast. And a number of things are still true. I may start doing that with a few other things, actually. I’ve been writing about medicine for years. I’ve been writing about the conflict, this tension, for years. Some things will never change.

This is the beginning of that post:

“Patients are a virtue”

And this will be dedicated to them.  A few in particular, who have brought up these issues.  As preface, I've been shadowing a doctor in the city for the past few months.  One afternoon a week, I go in to the hospital…and follow him. In essence.  I'm in on the patient exams (except for the few- maybe three, or four- who haven't felt comfortable with a student there. understandable).  I've worked with the practice assistants too (PAs here, though in TX that means Physician's Assistant. very different), bringing in patients from the waiting room, getting height and temperature, starting to fill out their charts. etc. clearly I can't do much in the practical sense, not being ah, qualified, or even in medical school. 

Why am I there.  This particular doctor (RC, simplest to name as he signs his emails) was my professor a year ago for a course that was supposed to be "Literature and Healing." It turned into a poetry workshop, because he was the visiting poet for the year and the demand for his poetry workshop was so high that the admins decided he should have two workshops and no class. Disappointed, yes.  I had arranged my entire course schedule around that one class (and Thursday, 5-8 pm- ain't easy).  But more than that, I had wanted to take a course- any course- with him. To spend any amount of time with him.  Why?  He's the reason I'm still in science.  He is, in short, my hero.

My hero.  At the beginning of last year, I was so frustrated with science- with the curriculum- with the people- with the outlook- that I was very seriously considering dropping it altogether.  Giving up on what I decided ten years ago would be my life's work, and pursuing literature, alone.  OB (poetry advisor, teacher at the time of poetry workshop), knowing this dilemma, gave me a book.  RC's book, essays and some poems, describing his experience with medicine, why he became a doctor, and what it was like.  Reading, I was re-inspired.  His words made me remember why I loved science in the first place, why I did it, and what joy it could bring.  Besides reigniting my passion for research, he showed me that the fusion is possible- he is a physician (internist) and a poet, and pretty damn good (and renowned) at both.  (except for the research I would like to do), he, in essence, has done and is doing with his life what I aspire to do with mine.  He's doing it well.  And the man offered me, a year ago, the possibility to work with him at the hospital and share his experiences and get a feel for the "clinical aspect" of things.  I would have been crazy to not pursue this offer avidly.  As I did.

And my first-draft med school application essay (the fake one, the one I had to send to the pre-med board at college when I interviewed with them three years prior to applying and just prior to Peace Corps....). I wrote about shadowing Dr. Rafael Campo (the “RC” of above. I played at HIPAA with everyone’s names before it was cool…), physician-poet-mentor….

 This paragraph is from that:

Dr. Campo's clinic treats general adults, but he focuses on Latino patients and patients with HIV/AIDS.  I was astounded by the trust and confidence each patient gave him, but I was even more taken aback my Dr. Campo's personal relationships with them, no matter how long it had been since the last visit.  Each case—even the routine checkups—was truly unique, as each patient was unique.  He, as I aspire to do someday, seeks to heal not the illness but the person, to lovingly read each distinct narrative and respond to its artistic demands.  His Latino patients, no matter how fluent their English, opened their tongues a bit more loosely to describe in vivid color each symptom and episode.  One man's cholesterol and subsequent leg pain increased after a visit home to Peru, where we deduced his dietary changes may have caused the problems:  "you know, doctor, what the family feeds me at home!"  I chatted eagerly with another patient, trying to remember bits of my high school Spanish, and thoroughly confused him when I insisted I had a sixteen-year-old hija (daughter), when I meant to say hermana (sister).  "You look young" he smiled at me, indulgingly, his illness taking a backseat to the doctor he loved and his bumbling new assistant.  I marveled at the couple, husband living with HIV, wife sero-negative, who walked in with mountainous folders of information, ready to wrestle and harness science as it manipulated their daily lives.  Sitting silently in each exam, I soaked up the humanity with the medicine, greedily. 

It may be an “easy way out,” posting things I wrote six, no, six and a half, and five and a half years ago. My knowledge base has changed, certainly. I am, now, becoming a doctor, and in terms of getting the degree, pretty far into the becoming. This is two-thirds through the third year (of four). But, younger, less knowledgeable, a good deal less Spanish, I wasn’t wrong.

For now.

~j

November ending in red ribbons

Ok, it’s official, I didn’t win NaNoWriMo this year. (and by win, I mean write 50,000 words in November).

It may have been a bit ambitious to take on, alongside third year of med school and concomitant hours in the hospital/studying. Then again, I have been spending an hour – two every day writing; it’s just been poetry or essays. Or researching writing.

I did start. Like last year. I was planning to not write something new – I was either going to revise and finish last year’s novel (now at 65,000 words), work on poetry, or do…something. Else. But I sat down on November 1, taking one of the many, many breaks that are scheduled during anesthesia (seriously. The attending come into the OR every two hours. “Want coffee?” “Want more coffee?” “Have you had lunch yet?” Etc. No other specialty does this. I can imagine the surgeons glaring or snickering behind their masks, after they’re been standing for 8 hours without relief. At any rate)….

And a voice was there. So I started to write. It made me feel a little bit smug about my development as a fiction writer, as the voice arrived in first person and she is most definitely not me. Last year, I had started in first person and had to switch to third to keep myself out of it.

It’s an interesting story, maybe, though I don’t yet understand what’s happening, at all. I’ll finish it someday. The characters are: the main character, a little girl (nameless so far), the president (maybe Obama, probably not), and a few three-headed, wooden dogs. So far. I appear, as well, as a bystander at one point; I’m not sure if “I’m” going to be a recurring character. (At least, it’s someone who looks like me at a very particular point – ie, in Zoebefam when I was building the water project there. Only time will tell, I suppose, if it’s “me.”).

            This was a very different experience, in terms of writing – last year’s came to me in words. It’s very fluid, very poet-y prose, perhaps Jeanette Winterson-ish (if I flatter myself. All my influences are somewhere, after all). This year was all images, like I was flying/gliding somewhere and just writing down everything that I saw and encountered.

And it makes no sense. This story takes place in a world that is magical realism, perhaps, in another time period, perhaps. It seems to be some sort of speculative fiction – a genre I’ve read only small amounts of and do not know much about.

A sample of this year’s story, somewhere beginning-middle-ish:

(Context: I have no idea).

The girl looked strangely familiar. She probably lived in a candlestick. She walked toward me with a bounce, little flaring navy dress over transparent knee socks. Looking back at the president, his hand came off in her hand and she continued, unconcerned. The girl started floating a little, like the hand was attached to an invisible balloon without a string (and what do we need strings for anyway except cheese and hamsters?)

Looking into glass, she bit my ears. “This isn’t a wishing well,” the little girl said, “but I’ll throw coins on you anyway. Are you made of stones or salt? I’ll try not to melt you.”

“How would I know if I melted?” I asked her. This sounded concerning.

“Do you carry an umbrella?”

I looked at my elbows, Nothing there except some trailing ribbons.

“Then probably you don’t. “

Compare with last year’s random sample:

(context: Sera, main character, just smashed her finger into a wall, and she’s watching the skin change colors. This is from the middle/end of the scene).

Prisoners, tower-locked in membranes. Not the ones filling her skin. Catabolism – sanitizing catastrophe. Reversal of what is expected, from katastrophein down and turn. Strophe like ballads. Body like dead.

Delicate cleaving, coordinated cycles. Green comes first, biliverdin (Verdi like spring), carbon monoxide floating into tissues. Silent killer. Verdin turns to rubin, darkened red stone, breaking cells – monk-like chambers - into light. The white carriers, protein, to eat and build and break, albumen from alba, docks filled with too much color. In bodies red and green makes yellow, turning eyes and skin to gold.

Insensitive, unseeing to the slight new crook in the bone, Sera went to X-ray to earn more narcotics. White on black, gray for fat, water that wasn’t water. Photographing bones. Calcified proof of how long it would take you to dissolve.

The mind is strange and fascinating.

...And then the patient who does not have schizophrenia (who I thought, previously, likely did).

 This is relieving. I’ve been seeing him most days for the past few weeks, over which time he’s come to think of me as his psychiatrist or similar. – No, I never told him that, and he does understand I’m a student/in training. I am the one who recommended staying with the first drug regimen and adding one, though. I am the one who wrote the initial psych note and the follow-up notes. And somehow, somehow, this is counseling. Therapy. What I do with him, what we do. There was a study that did a case-control (not double-blind, but…something) on therapy with trained professionals versus therapy with other sorts of professionals masquerading as therapists (ie, architects, scientists…whomever). The patients did decently well. I’m not saying the discipline is useless – I believe the contrary, these days, actually. It is specialized, it is important, and the drugs can and do work.

Point being – part of the whole deal is just having someone to listen to you, who cares and is all-in. Who’s unbiased – as much as any human can be – because the only context in which they know you is what you’re telling them. They might get collateral (friends, family, previous physicians). But in general…

So I sit, in the yellow disposable isolation gown, with gloves on, and we talk. He talks, I ask questions, sometimes. The narrative bit is amazing. I have the agency to ask And then what happened? It’s an unfolding story to me, and somehow, in the telling of the story, he feels better – he says, at any rate. And I don’t think he has schizophrenia. Something, certainly, but it doesn’t seem to be that.  One of the psychiatrists who taught us a few years ago called it the “cancer of the mind.” True. Not for everyone – some people can recover from an initial episode of psychosis, and that’s it, or maybe they’ll have another one far down the line. That’s not what we see as often, though – but working in the hospital is its own bias. We only see the people who are sick.

(banner below is from AIDS Action Committee's website. Because I think they're really cool (used to volunteer there)). 

......And I’ll segue into World AIDS Day, a thought debate on does-this-sort-of-“visibility”-help-anyone, and December.

Addendum on the One Campaign – as far as I could understand, in 2005, their main message was “Africa is poor. Africa has AIDS.” Both of which are DUH, as in, clichés in language, at any rate, empty of meaning, digressive, pejorative, and oversimplified. Take that. But THEN, you get celebrities to play concerts around the world, bringing together tons of liberal, left-leaning, world-loving young adults to chant “Yeah!” to that sort of a message. And you don’t harness the energy. At all. You don’t use it to raise money. (“Awareness” in that arena is… what. Meaningless, in any manner I can see. Maybe someone with far more vision than I could create something spectacular). So, money. Volunteer hours. Donations of other sorts. ANYTHING. Millions of people there for free. Nothing happens. Except they buy rubber white bracelets, maybe (are those still in fashion?) And they go home feeling good about themselves. It’s like expensive shoe stores in Berkeley or similar telling you some minuscule percentage of the shoes you buy goes toward breast cancer research, or something. So you feel good about going shopping – there’s your good deed for the day. (at least that’s raising something for something. maybe. maybe.) At any rate.

I work in an HIV clinic in the states, now. This is a poor town (where I am currently). These patients do not have much income, and they get assistance from the Ryan White foundation (and federal) for ARVs and such. There are social workers in the clinic, case managers, a psychiatrist, nurses who do home visits…

And the patients look good. They look damn good, in fact. For 90%, you’d never know. They may have presented with AIDS, even, cachectic from tuberculosis or PCP or something in the hospital. Then they got into a care, on a good regimen, and they got better.

And damn, they look good. They come to the HIV clinic, get refills, basically, and take care of their hypertension, diabetes, hypercholesterolemia, insomnia, depression, chronic back pain, headaches, sore throats, etc, etc, etc….

We give them graphs of their viral loads and CD4 counts. This is pretty amazing to see, too.

They look good.

In Cameroon, I did see some who looked good. And I saw a lot who didn’t. And I saw a lot of babies die. (Another day. Another day). World AIDS Day? It’s pretty incredible what’s happened here. I won’t say it’s not. It’s absolutely incredible what the transformation has been, from GRID to the 1993 HIV/AIDS definitions from the CDC, ACT-UP, AIDS memorials (movements that did, I think, do something), the literature of HIV of that era (Mark Doty. Thom Gunn. Etc…), Angels in American, And the Band Played on, Rent, even... We’ve come a long, long, long way. So it’s easy to forget sometimes. Even fellows doing infectious disease/HIV don’t often see the kinds of opportunistic infections I’ve seen (wow, lucky me). We should celebrate the progress. We should disseminate the progress by figuring out ways that make sense to do that for other countries. And we should show the rest of the world – the southern world, the developing world, whatever – how well people can do with ARVs (HAART), and how well life can go on. This is the reality. “Poor” and “AIDS” and “Africa” have lost all meaning in connection to each other.

Far away, on the forgotten continent, who remembers Africa as more than a pop cause?

~j

And I leave you with a photo of my health club in Cameroon, performing a skit they wrote for World AIDS Day. December 1, 2006. (friends of mine). Below.