August 31, 2011

differential diagnosis - part I

     When encountering a disease like cancer, there are so many possibilities that can be encountered, that it can be mind boggling to the patient.  When the course changes paths, it can leave the patient saying, "what just happened here.  I thought we were doing A.  Now you're telling me we're doing D.  What happened to A, B and C?"
     And perhaps physicians don't do as good a job as they could at educating the patient about all that is going on.  But to be fair, the situation can be so complex, that there isn't any real good way to reduce it to layman's terms without grossly oversimplifying.  It's a tough balancing act but let me try to explain where my dad is at and why he's left in the lurch, so to speak.  It all involves the concept of a 'differential diagnosis'.  So first, I need to explain that conceptually.  I'll go into the specifics with my dad next.
     Whenever any patient presents, the first thing we're trained to do is to begin composing a differential diagnosis.  That's really just a list of all the possibilities specific to the situation.  For example, say little Johnny comes to the pediatrician with chest pain, a nasty cough, and all around just feeling poorly.  At the top of the differential diagnosis would be some type of respiratory infection, maybe pneumonia if it's really severe.  Down the list would be all sorts of other potential problems that are less likely but still possible.  We treat and rule out the most common and obvious causes first.  Tuberculosis is possible but not at the top of the list.  Now let's say that a 60-year old Johnny who's been smoking for 40 years presents with the same symptoms.  Given the patient, our differential diagnosis just changed.  Yes, we'll still include respiratory infections but now our suspicion has to include some potentially cancerous lung mass.  Or, possibly, there's an infection there on top of some other disease that has weakened the patient and made him more susceptible to the infection.
     So how does the doc even begin to communicate possibilities as wide and divergent as cancer and a simple viral infection?  One could lead to death and the other could mean being home sick for a few days.  Kind of a big difference there.  So as physicians, we're trained to keep our poker face on.  We run tests, tests, and more tests and begin to tick things off the differential diagnosis list.  And because some diseases require treatment quicker than others, we don't have the luxury of waiting until we're 100% sure.  The threshold of certainty is much lower in the real world.  Someone with acute appendicitis needs an answer pretty danged quickly.  They don't have weeks to figure it out.  But sometimes those tests can indeed take a lot of time.  And to be honest, when a medical team is chasing a viral infection and then cancer, it can appear as if they have no clue what they're doing.  It'd be a bit like going to an auto mechanic for a flat tire and coming out needing a new transmission.  And sometimes, that probably is the case.  The doc missed something critical and really is clueless.  (I doubt that to be the case with my dad.)  I won't pretend that doesn't happen.  I've seen it first hand.  But even when the team is incredibly competent, it can leave the patient feeling frustrated, confused and filled with uncertainty as to what is going on.  You kinda throw your hands up in the air and frustratedly ask, "is anyone in charge here?"  In the second part, I'll do my level best to read the tea leaves and guess at what my dad's doc had on his differential diagnosis list and what all that means.

August 29, 2011

one flew over the cuckoo's nest - part I

     We followed the signs to our assigned room.  To enter through the doors, you had to push a button.  To go back out the door, you needed a key.  These weren't designed to keep people out.  These doors were designed to keep people in.  The final door had a sign that said,

CAUTION - HIGH RISK OF ELOPEMENT

     Ooookkkaayyyyy.  They escorted us into a room and a psychologist came in and briefed us.  We were in one of the county psychiatric hospitals.  They had a volunteer patient that was going to come in.  The psychologist would interview the individual to demonstrate what our lecture taught us - how to interview a psych patient.  Unlike our actor patients, these were the real deal.  And unlike our actor patients, there's no set script you can follow.  They're psych patients.  Who knows how they'll present.  As one of our lecturers told us, "I don't consider that my day has started until I've had a patient storm out of the room and slam the door on me."  It's a bit of a mystery as to why our first patient encounters are with hospitalized psych patients but, oh well.  Sink or swim time.
     We hear a key in the door (wait, are we locked in this room?) and it opens.  A woman takes a half step in the room and her eyes quickly pan the conference room.  There are 14, count'em 14 doctors-in-training in white coats sitting around a table.  Not exactly a welcome sight for anybody.  I know that I wouldn't want 14 people assessing me, especially inexperienced students.  In less than a second, she shakes her head sideways, utters, "no way" and scurries out of the room.  That's encouraging.
     The psychologist leaves the room and catches the patient.  We wait a few minutes.  We hear the key in the door again (this door really does lock automatically to keep people out of this room) and the psychologist brings in the patient.  She nervously sits down and proceeds to be intereviewed.  About every two minutes, she puts her hand over her mouth and mutters under her breath, "I need to get out of here."  After the psychologist concludes the interview, she turns to us students and asks us if we have any questions we'd like to ask the patient.  While her words still hung in the air and certainly before anyone could even begin to formulate a question, the patient said quite adamantly, "Uh-uh.  I'm gone."  And she stormed out of the room.  I guess our day had officially started by the criteria above.
     The psychologist without missing a beat turns to us and we start discussing our clinical observations.  After the discussion, the psychologist says to us, "Oh, and her diagnosis?  She's paranoid schizophrenic.  I did not know that until after the fact since she's not my patient."  Why in the world would anyone pick a paranoid schizophrenic to volunteer to be assessed by 14 students???  I got the impression that someone was playing a very cruel joke.

August 27, 2011

tradition

     Traditions are usually thought of as being good.  In fact, I'm not even aware of a word that implies a bad tradition.  If you break the word down, it has a long history.  Coming from the now dead language of latin, the original word is 'traditio'.  Not too different from our modern word.  And if you look at the roots of 'traditio', it's actually a combination of two words.  The first is 'trans' which means 'over'.  Pretty straight forward, like in 'transcontinental' or 'transport'.  It implies a moving from one place to another.  The second part is the verb 'dare' which means 'to give'.  So literally, it means 'to give something over' which has now come to mean 'to hand down from one generation to the next'.
     I think for my mom today, the literal meaning of 'to hand over' is much more appropriate.  Today is her birthday.  Last year, she spent it down at MDACC with my brother while he was getting his tonsils removed.  There was still some element of hope in the eyes of those around me then.  Today, she's down there with her husband so he can get the second infusion of immunoglobulins (basically, he's getting the antibodies pooled together from numerous donors in an effort to provide some reinforcements for his compromised immune system).  So for two consecutive birthdays, she has handed over with hope something quite precious to the entrusted care of MDACC.

My dad has entered the blogosphere giving his own thoughts on this journey.  You can read him here.

http://abe-conversationsbymyself.blogspot.com/
    

August 26, 2011

tower of babel

     So what exactly does a freshman year of med school look like in hindsight?  There could be lots of ways to measure it - hours studying, amount of decreased sleep, number of beers imbibed.  But the best way, it seemed to me, was recommended by my family doc.  Stack up the books.  


     Lest you think I'm playing with forced perspective on the camera, that's an 80 pound pit bull next to it.  She ain't exactly a dainty dog.  While she can chomp through steel, not even her mandibulas del muerte could go through this much material.  And to be honest, this isn't all inclusive either.  There's no cadaver (HUGE amount of learning and memorization there) and after the first block, I rarely bought the books anymore in the interest of saving time and money.  And to be fair, I did split the first year into two, though in retrospect it was definitely not a 50/50 split.  For the fall semester, it was probably a 40:60 split and the spring semester was probably near 20:80.  So this past spring, I was doing 80% of what the rest of the students were doing with respect to class load.  Add to that my brother and my dad, and I was more than carrying a full load so I'm not scared of the second year carrying a full load.  What I am afraid of is that I have to remember that pile for the Step I exams next summer.  That's in addition to what I'm going to learn this year.  Drinkin' from a fire hydrant, eatin' an elephant, insert your own insane analogy here.

August 25, 2011

moving target

     As we left yesterday's appointment with the leukemia doc, I turned and looked at my dad.  There was an expression to him that was not content to be confined to his face.  No, this feeling of utter and complete perplexion was so vast in encompassed his entire being - his gaze not focusing on much, his shoulders slumped and his back bent over.  He had been doing so well.  His energy had begun to return indicative of him making his own blood.  The sixth and final round of chemo was his "victory lap".  There was then to be a break of a few months, at least enough to allow my mom and dad to spend Christmas together without any distractions of chemo fatigue or nausea.
     But then in a moment, last Friday we found out his neutrophil counts had plummeted.  No sixth round of chemo until we have a better idea of what was going on.  His overall white blood cell count had decreased substantially, as well.  And the red blood cell count had dipped ever so slightly.  Just enough to make the picture extra confusing.  The PA asked my dad, "you didn't already have chemo, did you?"  Because this is what his numbers would look like immediately after chemo.  Only he hadn't had chemo.  The numbers were supposed to be going up.  Cancer didn't read the chart.  His numbers went down.
     More bloodwork and a bone marrow biopsy and wait until yesterday.  I'm not going to go into all the details right here and now (my studies are beckoning) and it's where medicine becomes art.  Things are very subtle, very nuanced.  Lots of shades of gray.  I'll explain a bit later.  For one reason or another (or yet another or another), my dad is no longer making any neutrophils.  I don't mean they're low.  I mean zero, zip, nada.  He's never had neutrophil counts this low at any time in the process.  And even the couple of times he did get really low, those are the times we ended up at the ER for neutropenic infections.  The good news is - and yes, there is good news - we know that his CLL is not acting up because all the other counts look good and the bone marrow confirmed it.  Likewise, we know that he didn't develop a different type of leukemia (not that common but it does happen).  We also know that it's not a game changing addition of a disease called Myelodysplastic Syndrome (MDS).  Adding that to the mix would have greatly complicated things, and I mean greatly. 
     So the ship changes course for the hundredth time.  Or, the thousandth time.  I lost count.  No victory lap of a sixth round of chemo (it would have the potential of doing more harm than good given where he's at now).  No break of six months.  And a greatly reduced ability to fight infections in the interim.  It's stem cell transplant time.  Fortunately, one of his brothers is a FULL match.  That's a very, very, very big deal.  FULL as in 10 out of 10 markers match perfectly.  That lessens the chance of rejection substantially.  He's already booked a flight down to Houston so they can begin to assess him.  They need to perform a pretty comprehensive physical exam and make sure he's fit enough to donate.  I would say I don't anticipate any problems but nothing has gone as planned with this disease.....
     As to when my dad starts his end of the deal, that's not clear yet.  We need to wait on the results of a few more tests.  And to be honest, there won't be definitive answers then either.  Possibilities, maybes, kinda sorta, like I said, it's where medicine becomes an art.  Depending on those, we're talking potentially sometime in September or probably October.  So as my dad likes to say, "we wait, and we wait, and we wait...."

August 18, 2011

professionalism

     This year, we have an entire course called Behavior.  Taught by psychiatrists, it's part psychiatry and part how to interact and deal with patients.  We just had one lecture on the doctor-patient relationship and so of course professionalism came to the forefront.  About one fourth of the lecture was dedicated to the rather obvious dictum, but apparently difficult to follow based on all the anecdotes we heard, "DO NOT SLEEP WITH YOUR PATIENTS.  EVER.  Even if you have to say to yourself before you go into every room, 'don't sleep with this patient', do that because it's never a good idea to sleep with your patients."  And the instructor would then proceed to tell us yet another anecdote about when one of her colleagues violated that rule.

August 17, 2011

in pursuit of purpose

     The conversation is always the same, only the names and minor details change.  It goes something along the lines of "Your brother is in a better place.  God had a purpose for his death.  He was needed up in heaven.  Blah, blah, blah."  I always quietly bite my tongue and don't reply.  I really want to rip those empty platitudes to shreds.  But in the end, that wouldn't really change the way I feel.
     I thought more and more about this very common response to loss.  I think it reflects an innate human need to find meaning and purpose in an event that disrupts our world view to its very core.  Things we clung to no longer seem true so we try to erect the same house of cards, hoping this time it will withstand the winds.  Our psyche and society has difficulty with accepting it on the terms of "shit happens."  So we need to turn it into something good and full of purpose.  Then we can get back to the business of living in our still intact world view. 
     Only that doesn't work so well.  At least for me.  I believe it cuts our internal journey short and closes too many doors into our soul.  "My brother is happy and in a happy place now so I can now go back to my life.  Pain over."  That would be temptingly easy to adopt.  But I don't believe it.  Not even for a second.  In it's place, I adopt a different strategy.  We cannot change the circumstances of a tragic loss.  Buildings fall, diseases happen, cars collide, and people die.  That cannot change.  The only possibility is what I do with that tragedy.  Do I become jaded and embittered?  Do I push it down and pretend it didn't happen?  Or, do I befriend the notion that pain comes in all manners and different forms?  To find a purpose, I know which choice will make me a more caring and empathetic doctor, nevermind a more soulful person. 
     So instead of assigning purpose that absolves us of any choice, responsibility or duty (he's in a better place, God had a purpose, etc), I decide to create purpose from my actions after the fact.  That's a much, much more difficult proposition.  Suddenly, I'm now responsible for growing out of a tragedy.  There is no getting over it, moving on, or getting back to a normal life.  The choice is a downward spiral, stagnation of a status quo, or a painful growth by befriending pain.  I must create my purpose and recovery or risk falling.  Scary stuff.  Studying for school would seem easier at this point but my brain just won't let that happen. 

August 15, 2011

summer

     My summer is done.  School has started, my lack of class attendance notwithstanding.  I began to look back over my summer with my wife.  "Wow, I didn't do anything."
     "Sure you did.  You went on your hiking trip, you....." my wife tried to reassure me.  But no, compared to last summer, I did very little by conventional measures.  To an outsider's eyes, it would appear that I sat and watched the grass grow all the while drinking a beer or three.  My wife became a little concerned at times.  There's a very fine, thin line between working through grief and wallowing in it.  And indeed, I did watch the grass grow.  I watched the bees buzz, the butterflies flutter by, and the birds sing, all the while drinking a beer or three.  And all the while, I pondered much about life and it's counterpart death.  I now truly understand what it means to 'work through grief.' 
      Knowing my time was short, I now intimately know what intense grief work requires.  I read deeply and richly about the process of dying and living.  Psychology, religion, medicine, classic literature, personal narrative - not content with any one viewpoint, I asked the meaning of dying and living from a number of authors and thinkers and doctors.  I thought and thunk and wrote and pondered and meditated and cried and lashed out in anger.  Dissecting a tornado, really.  My own son commented the other day to my wife only half jokingly, "well I can't believe dad's memory, you know his brain ain't all here lately."  So did it help?  At first, I was not sure.  After all, I often still feel like shit.  But grief work isn't necessarily about feeling better.  And so after sorting through some more issues surrounding the impending struggle of my dad, I can now say it absolutely helped.  Will I have more emotions to sort through during school?  Absolutely.  I am not so naive to thinking my grieving process done, nevermind the stresses of my dad's battle and my own school (med school is a wee bit stressful in its own right, even if I don't portray that).  Far from it.  It's not even been three months yet since my brother died.  A minimum of two years for a major loss like this sayeth every single book I read, be it from a layperson or grief counselor.  But I feel like I am better prepared and armed to process those feelings as they come. 
     So today, even though school has started, I trust my soul's intuition and extract one extra day of summer - to sit and watch the grass grow while drinking a beer or three and pondering the meaning of life.  I've earned the right to do that.  And even if I haven't, oh well, experience has taught me that I will do just fine with school anyways.

August 14, 2011

storm clouds

     The heat is oppressive, even for a Houston August.  Concrete under the rays of the sun could cook an egg on an afternoon such as today.  No hope of even a drop of rain is in the forecast.  Yet my soul has been overcast with dark and sullen storm clouds.  About what, I do not know.  Perhaps the loss of my brother?  Common sense would say, yes.  That would seem rational and so I thought but deep down I should've known that it had nothing specifically to do with the loss of my brother.  Deep down, the next storm is about the possible loss of my dad.  My dad has remained stoically optimistic about his prospects.  It's in his nature to believe that things will work out.  But that optimism just wouldn't line up with my gut feeling, though.  Deep in the recesses of my bowels, I knew that 10-15% mortality couldn't be the whole story.  Something was missing.  My gut was telling me that storm clouds were brewing on the horizon.  How many and how big?
     Recently in the news, there has been much hype about a therapy for my dad's disease, CLL.  My dad had seen it on tv so I was obligated to track it down and research it.  Pretty remarkable stuff and very intriguing.  And as I read more, I came across this quote about CLL and stem cell transplant from WebMd.com, "Cure is possible, but it requires a risky bone marrow transplant. About 20% of patients don't survive this treatment -- and even when they do, there's only a 50-50 chance of a cure."  Wait, what?  If no cure, then my dad is dead.  50-50?!?!?  What's the real survival rate for this procedure?  From what we were told by the stem cell doctor, I thought it was 85-90%?
     Into the early morning hours I combed the literature and from what I could gather, the odds of being alive 3 to 5 years after a stem cell transplant for refractory CLL is roughly 50-60%.  Only slightly better than the flip of a coin.  As I searched my memory, I did recall that the 10-15% referred to the initial procedure, the first 100 days, most likely.  I never thought to ask long term outcomes.  Why the doctor did not volunteer them isn't clear to me.  Maybe he didn't want to hit us over the head on the first visit.  To give him the benefit of the doubt, we had another appointment with the stem cell doctor but had to cancel due to the dying of my brother.  But still, an informed patient is a better armed patient.  False hope and sugar coating things does NOT help.  Note to self, ALWAYS be honest with the patient.
     So, we are faced with the looming questions, what exactly are the odds for my dad?  Is what I gleaned from the literature correct, or am I misreading the situation?  Has the procedure dramatically improved over the past few years?  Surely, it must vary according to disease and health status, but how does that relate to my dad?  On the flip of a coin, could I lose both my brother and my dad in just a few years?

August 13, 2011

not so subtle foreshadowing...

from Robert Fulghum's All I really need to know I learned in kindergarten

In the early dry dark of an October's Saturday evening, the neighborhood children are playing hide-and-seek. How long since I played hide-and-seek? Thirty years; maybe more. I remember how. I could become part of the game in a moment, if invited. Adults don't play hide-and-seek. Not for fun, anyway. Too bad.

Did you have a kid in your neighborhood who always hid so good, nobody could find him? We did. After a while we would give up on him and go off, leaving him to rot wherever he was. Sooner or later he would show up, all mad because we didn't keep looking for him. And we would get mad back because he wasn't playing the game the way it was supposed to be played. There's hiding and there's finding, we'd say. And he'd say it was hide-and-seek, not hide-and-give-UP, and we'd all yell about who made the rules and who cared about who, anyway, and how we wouldn't play with him anymore if he didn't get it straight and who needed him anyhow, and things like that. Hide-and-seek-and-yell. No matter what, though, the next time he would hide too good again. He's probably still hidden somewhere, for all I know.

As I write this, the neighborhood game goes on, and there is a kid under a pile of leaves in the yard just under my window. He has been there a long time now, and everybody else is found and they are about to give up on him over at the base. I considered going out to the base and telling them where he is hiding. And I thought about setting the leaves on fire to drive him out. Finally, I just yelled, "GET FOUND, KID!" out the window. And scared him so bad he probably wet his pants and started crying and ran home to tell his mother. It's real hard to know how to be helpful sometimes.

A man I know found out last year he had terminal cancer. He was a doctor. And knew about dying, and he didn't want to make his family and friends suffer through that with him. So he kept his secret. And died. Everybody said how brave he was to bear his suffering in silence and not tell everybody, and so on and so forth. But privately his family and friends said how angry they were that he didn't need them, didn't trust their strength. And it hurt that he didn't say good-bye.

He hid too well. Getting found would have kept him in the game. Hide-and-seek, grown-up style. Wanting to hide. Needing to be sought. Confused about being found. "I don't want anyone to know." "What will people think?" "I don't want to bother anyone."

Better than hide-and-seek, I like the game called Sardines. In Sardines the person who is It goes and hides, and everybody goes looking for him. When you find him, you get in with him and hide there with him. Pretty soon everybody is hiding together, all stacked in a small space like puppies in a pile. And pretty soon somebody giggles and somebody laughs and everybody gets found.

Medieval theologians even described God in hide-and-seek terms, calling him Deus Absconditus. But me, I think old God is a Sardine player. And will be found the same way everybody gets found in Sardines - by the sound of laughter of those heaped together at the end.

"Olly-olly-oxen-free." The kids out in the street are hollering the cry that says "Come on in, wherever you are. It's a new game." And so say I. To all those who have hid too good. Get found, kid! Olly-olly-oxen-free.

- Robert Fulghum, "All I Really Need To Know I Learned In Kindergarten"

August 10, 2011

return to what?

     School?  Oh yeah, I'm a med student.  School starts next Monday?  Really?  Huh, I guess I should show up.  To most participants of this mad, fantastic journey, med school would seem a dream come true.  So few get a shot at getting a chance at running the gauntlet and many work so hard for so long to make it happen.  I should be grateful.  And at some level I am, I guess I am.  But for me, it's so much more complicated.  Before I ever even got to my hospital training (happens next summer, by the way), my mom pointed out to me that the FIRST person I ever pronounced dead, so to speak, was my brother.  One can never, ever unlive that.  And now my dad faces his own gauntlet of stem cell transplant.  Yes, it's a hope that my brother didn't have.  But it's not without it's own cost.  Ten to fifteen percent of the patients die right off the bat.  Infection or rejection, not that it matters so much as to the cause.  Nevermind the psychological toll of exchanging a year or more of one's life to the medical establishment for the hopes of a long remission.  Now do that on top of grieving the loss of your son/brother to that same foul, loathsome and damnable disease.  So, yeah, add the concept of medical school to that and it becomes more than just a little bit ridiculous.  Med school is notoriously rigorous and stressful in it's own right, and deservedly so.  But it can't help taking a back seat to the more personal issues at hand.  Emotion trumps reason every time.

August 9, 2011

return

     Well, I'm back.  I took a break and went to the woods because I wished to live deliberately.  Notice that I/Thoreau didn't say 'happily' or 'cheerfully'.  Deliberately.  There's a difference.  To take life (and death) and "reduce it to its lowest terms, and, if it proved to be mean, why then to get the whole and genuine meanness of it, and publish its meanness to the world."  I took my son, as usual, for our annual summer trip to the backcountry mountains of Colorado.  But this time I also took my nephew.  I was not expecting a light and easy trip.  He just lost his dad.  I just lost my brother.  How could it be anything but reducing life to the genuine meanness of it?  What did I bring back from it?  I'm not sure.  Honestly, it's still day to day, hour to hour, minute to minute for me.  Of what I'm not sure could fill an ocean at this point.  The anger is gone but an aimless malaise has set in its place. 
     Beyond that, I'm now ready to put up the video from my brother's memorial service.  His wife and son put it together.  Tragically beautiful.  At the memorial, I wasn't able to see much of it because I was sobbing uncontrollably.  At least now, I can pause it to recover.  I don't know that I'll ever be able to get through it without breaking down.  And to be honest, I don't think that I want to be able to get through this without breaking down.  The day that happens is the day my heart hardens just a wee bit too much for my comfort.  Damn, I miss my brother.