Monthly Archives: January 2014

Breathe

We’re born into our bodies, and we take that for granted.

Our first job is to take a breath, something we’ll hopefully do many millions of times and never think about.  That first breath changes everything:  our blood starts to flow through our heart and lungs in a different way and for the first time we taste a new world.

Before we’re born, all our needs are met via an artery and a vein.  It’s how we get our oxygen, our nutrients, our means of fighting infection.  When that connection is lost,  we start to depend our own body to notify us when we need something.  If we’re fortunate, there’s someone nearby to respond, to feed us, to clean us.

Sometimes that need is simply to be held, a combination of touch and movement and hearing a larger heart beating, and we learn to assemble those things into love.  Messages from our body, delivered to our brain and becoming the most important emotion we’ll ever experience.  A reassurance that what we need will continue to arrive, that we will be able to grow and thrive and remain.

Anyone who attempts to distill these things down to science, to a cascade of synaptic firing and neurotransmitter release can never have held their own child during the moments of those that first breath, that first cry, after making it through all that pain and fear and blood and  felt the flood of relief carried on that mighty shriek. The first of hundreds of millions of breaths to come.  Much more than physiology and catalytic enzymes.

Our bodies – astoundingly complex assemblies whose chemistry we’ve only begun to understand, physical substance that is driven and maintained by emotions that become so intertwined as our bodies and minds develop, that we cease to understand them as distinct things.  We discourse about the physical self and the emotional self as if they’re separate, but they’re not.  Each is made of the other.  They are undissectable.

When we’re young, our bodies are our deliverance.  Uncontainable energy, flexible and cartilaginous and healable.  Limited only by the height of the countertop and too many syllables.  Sometimes our bodies report pain, but it’s usually the byproduct of growth spurt or exertion.  Sometimes it’s a bone knitting back together or a scar forming.

As we age, we calcify.  Our thoughts and legs less prone to frenzy and sometimes harder to compel.  We creak and pop and sometimes forget.

Sometimes we discover a new character of pain.

I had a patient who was diagnosed with stage IV lung cancer, found when she came to the hospital for weakness in her legs.  It was in her lungs, her bones, her spine, her brain.

The body she had come to trust, to recognize as herself, the place she depended on, now an enemy. Now she was confined in a small space with a fast, destructive thing whose motives were unknowable.  Her cancer all but ignored our medicines, and her back pain and headaches became the landscape on which all other things were placed.  Nothing was just one thing anymore.  Hunger and eating both meant pain.  Eventually her ribs hurt so much that the previously effortless act of taking a breath was restricted as if tied by wire:  the memory of deep lungs unable to be satisfied by her short, stabbing attempts.  Her physical home, invaded and traitorous.  Her mind, however, remained without self-pity or resentment.

My colleagues in Palliative Care were able to give her the only thing she needed then:  a reprieve from the relentless transformation of her physiology into the source of her greatest pain.  She passed away comfortably in her home attended by hospice nurses.

She and others have taught me that there’s a part of us that’s unafflictable.

There’s a thing in us that cannot suffer disease, or degenerate, or know pain.  Objectively, I don’t know what a spirit or a soul truly are, but I can say with some hope that I don’t think our bodies are our limit.  When our physical self transforms into something malevolent, we remain something else: a thing that is capable of dignity and strength even when our ability to raise our head is taken away.   This thing opens our eyes when we first join the world, and squeezes our lungs to project that first high-pitched roar in the delivery room.

It’s the thing that drives our first breath.
It remains after our last.

Time, part 1

There’s no good age to die.

Way too many of the patients I’ve seen over the past two years are harrowingly close to my own age. I think it’s less startling to hear that an older person has cancer than when a young person is diagnosed, but I have yet to identify the age when this transition happens.

Maybe it’s an unspoken understanding that older people die and younger people shouldn’t, but in the cancer community maybe age itself isn’t the best yardstick to decide who’s treated and who isn’t.

Last week in the outpatient clinics, I saw a man in his 80s with an advanced bile duct cancer. All cancers are varying degrees of awful, this type is more so than most. He had been on chemotherapy for a few months and had gone for a CT scan to see how the cancer was responding.

The attending with whom I saw the patient navigates patient care like an optimistic hurricane. He’s very smart and wakes up early so he can get some work done before he has to go start work, and then rushes home so he can do some work.  He does at least twice what’s expected of him because he loves it.

Sometimes his tie is a bit loose, and he may occasionally have a hair or two out of place. It’s the cost of productivity.

We went into the exam room to see if the patient had any new problems. Though frail and cane-supported, the clear-eyed man sat upright in his chair and spoke well. He was tidy and his hair was combed, his clothes were straight and fit well. He reported some weight loss but otherwise nothing new. The CT showed his cancer had grown. We told him this, and that it meant the chemotherapy wasn’t helping, which he had been expecting. That didn’t make it easier to hear.

It doesn’t matter how long past the average life expectancy someone lives, this conversation is never good. This man’s response was contained: he was (his words) ‘profoundly disappointed.’

The man slowly hitched himself up onto the exam table for a physical. My attending leaned over to put his stethoscope on the man’s chest, and the man took the knot of my attending’s tie in both hands. He tightened the tie a centimeter, and rotated it a few degrees so it was straight. It made my attending pause for a second and say, ‘oh, thanks.’

An incredibly warm gesture that repainted the tone of the room.

It was a tiny adjustment, but it was his nod to the order of life, a gesture more powerful than he could have spoken that he had values and cares and dignity. We finished the visit with a plan to switch chemotherapies because this is what he wanted to do.  His life would keep going.

With this cancer, a second-line chemotherapy may only help a centimeter, a few degrees of rotation. If they give this man one more day of good life, then maybe it’s worth doing anyway.

Doing things differently

When you tell people that your dad died of lung cancer, often the follow up question is, ‘Did he smoke?’

In my case, the answer is, sort of.

I have fuzzy memories of my dad in our basement, smoking his pipe in his black leather chair and watching the original ‘Doctor Who’ (I’m still processing the cultural implications of that last detail).  Rumor has it he smoked cigars in the ’60s, but if Mad Men has taught us anything, that was pretty common.  I don’t think he ever had a cigarette in his life but I can’t confirm or refute because it feels awkward to ask anyone who would know at this point.

He was also exposed to an unknowable variety of malevolent compounds working in a printing company (the kind with movable metal type and etching, not the ink-jet kind) and reportedly was Agent Orange-adjacent for a summer while clearing Iowa countryside for the State Highway service as a teenager.

All of this is focusing on the wrong thing.

One of my favorite patients has been coming to see me for about 6 months since he was diagnosed with widely metastatic cancer, and during our first visit we talked about the extent of his disease and the treatment options.  After that, he had a brief emotional moment when he asked the question that is on the mind of every person who receives news of a terminal disease.

What did I do to deserve this?

Which is a very different question than, what were the events of my life that might have increased my risk of getting this?

What did you do to deserve this?

Nothing.  I don’t care who you are or what you did.

When people ask whether my dad smoked, they’re really asking, ‘Am *I* doing everything I possibly can to ensure nothing bad is going to happen to me or anyone I love in the near or distant future?’

You might be trying, but you’ll fail.

A few months ago I was in the heme pathology lab looking at bone marrow biopsies with one of our heme pathologists.  It’s microscope work and kind of meditative (this may be subjective) and we had been through about ten slides when a bad one came up.

Large, active-looking white blood cells, way too many to be normal.  Acute leukemia.

The boy’s date of birth was 2008.

In lower-risk childhood leukemias, the chances of surviving four years is about 95%.
Even very high-risk types have about 80% chance.  If we had treatments with these success rates in adults we would be calling our moms to tell them how proud of us they should be.

I have two kids, and from a parent’s perspective, these numbers are exactly 5 and 20% too low.  Since having children I have found my sense of well being at times threatened by the existence of moving cars, tree nuts, sharp metal in any form, UV-B radiation, anyone who had a bad morning, and BPA-containing plastic.  I have no point of reference for the sense of cosmic injustice that could possibly accompany a diagnosis like leukemia, other than to say I am sure it’s an amplitude and character of emotion that I’ve never needed to, and hope never to, endure.

But were I in that situation, it’s possible I would ask, what did I do to deserve this?  Then I might ask, what does this mean?

I think these are the questions on which we should be focusing, but not because it’s necessary to answer them.  It might be necessary to acknowledge that they have no answers.

When my dad died, I so intensely wanted to understand it.  I repeatedly attempted and failed to construct a narrative that made sense, this loss of a central role model when perhaps he would be most needed as time pulled me into adulthood.  I wanted to make it a Hemingway story, stripped of anything superfluous and brutal but romantic in the way the characters were battered by their circumstances but were still sufficiently self-contained to walk themselves home at the end of the book.

I continue to fail at this, and forgive the speculation but it can’t be easier when a child is at the center.  There’s no context in which it makes sense, there’s no greater plan whose outcome makes it forgivable (and generally I’m a believer in greater plans), and we torture ourselves because we’re so convinced that it should mean something.

Maybe it doesn’t mean anything, in the way we think it should.

Maybe it only means something when we make it mean something, when we force it to mean something good.  When we take the moments that we have with the people we love, the people who are still around us, our children, our families, and recognize that even if everyone is wonderfully healthy, it’s also true that those people will never be the same people as they are in the moment that’s right here.  In the next moment, and the moment after that, things will happen that will make them different people, and you’ll also be different because things will happen to you and you’ll add those things to the nearly infinite number of things that have happened to you already, all of which make up your understanding of how the world is.

Apologies to Jon Kabat-Zinn, but the present is all we have.  Asking whether we should have done something differently to prevent something that’s happening right now is only useful to other people. It’s useless to us.  We can’t even really depend on resolutions made now to matter in the future, because nothing happens in straight lines.  There’s always a zag.

Sometimes the slide shows leukemia, and you don’t deserve it, and you can’t change it.

You might be able to make it mean something.