the lows

     I walk the half mile from my school to MD Anderson.  It could be the 3rd time or the 300th time.  I lost track long ago.  I call my dad to let him know I'm on my way over.  "I'll update you when you get here."  Uh-oh.  That can't be good.  Normally, I get some sense of what is going on.  But nothing this time.  And we haven't even met with the stem cell doc yet.  The donor, my dad's brother, is running into a brick wall from the perspective of a donor.  His platelet counts are too low to donate. 
     But really, that's only half the problem.  It's compounded by the fact that he hasn't been able to muster enough stem cells to even hit 1 million cells after a good week of attempts.  They want 4 million cells.  They can get by with 3 million but even that has some qualifications.  You can imagine that if you collect all 3 million at once, there'd be less stress and handling on the cells.  But if takes 6 collections, well, some of the cells aren't going to be viable so you don't really have 3 million live cells.  It'd be like going to the grocery one item at a time or all at once.
     So they sent him home to recuperate.  The hope, and I mean hope in the philosophical sense of the word as this is anything but a diagnosis, is that his brother battled a cold a couple weeks back and perhaps that's limiting the response of his bone marrow to kick out enough stem cells (and platelet cells).  We shall see in due time.  If that's true, then he should give a good collection in a couple of weeks.  If not, then it's time to hit the national registry to attempt to find a match there.
     If you're like me, then you may be wondering why they don't just go directly into the bone marrow to collect the cells they need.  I asked the stem cell doc that very question.  First, if they can't collect peripherally via the blood, then the collection tends not to be adequate from the bone marrow.  One predicts the other.  But equally important is the fact that stem cells collected from the blood tend to produce better outcomes (at least in MDACC's hands) than stem cells from the bone marrow.  So it'd be better to collect peripherally from an unrelated donor than from the marrow of a related donor.  As to the why, that's complicated and I'm too tired to go into it now (exams start next week for me).  Besides, it'd be esoterically boring to all but the most hard core science geek.  I'm going to go drink some boxed wine and watch South Park before drifting off to sleep.  It's been a long day.

be careful what you ask for

     Checking my email, I notice one in my school account that's from an unfamiliar name.  I open it and it's from the doctor I will be paired up with to start practicing my History & Physical on real patients.  No more actor patients.  Well, we'll still use them for other stuff.  But, at least in part, it's now time to move onto the real deal.  I requested an oncologist.  Normally, they don't like to take requests but the course coordinator knows my story and is more than willing to help me out.  So I get paired up with a breast oncologist at MD Anderson. 
     In the email, he's giving me the time and date of our first excursion.  He asks me to show up at the hospital wing of the complex.  I offer to meet him at his clinic thinking it would save him a trip.  Nope, he informs me that the patients I will be seeing are inpatients.  That means they're hospitalized.  These patients are sick.  Of course, anyone with cancer is sick but they're not hospitalized without reason.  So I'm skipping from playing doctor on actors to real cancer patients in the real hospital.  Couldn't we just start with a patient that has the sniffles or a sore ankle?  Nope.  These are patients grappling with a life and death disease.  I'm terrified while reading the email.  But I asked for this. 
      I immediately flash back to my brother's countless visits to the clinic.  Often, the visit would start off with a resident.  It is a teaching hospital, after all.  And some of the residents inflicted emotional pain on my brother by their ineptitude.  They weren't mean.  They just didn't know what they were doing.  Inexperienced or stupid?  In the end, it doesn't matter to the person on the exam table.  That patient is scared, in pain, confused, and frustrated.  Violating that Hippocratic oath, albeit unintentionally, they inflicted harm upon the patient.  I watched it first hand and it infuriated me.  I even came up with a rule that I'd tell everybody, "don't ask the resident any medical questions.  None.  Ask the nurse, ask the PA, ask the doc, but for the love of Pete, let the resident get out of here with doing as little damage as possible." 
     I'm not a resident.  I'm even further down the hierarchical ladder.  Right above mop bucket is medical student.  That's me.  That will now be me on the side of that doctor-patient dynamic.  It's scary.  Damned scary.  All I can do is trust myself.  Trust that little unconscious part of my brain that takes over during these moments.  It happened when I played football and it seems to happen in medical situations, at least so far.  Something just takes over and does the right things.  That, and practice like hell with my wife to insure I don't inflict a moment of pain on these patients.  I watched it happen on my brother and I'm going to do my damnedest to make sure it never happens to one of my patients on which I'm learning.

waves

     I was sitting in my backyard, the temperatures surprisingly nice given the brutal and record breaking summer we had.  I had spent the Saturday morning studying, had lunch and then mowed the yard.  Nothing to do now but relax with satisfaction of a good day.  Drink a beer, observe the butterflies, and periodically move the sprinkler.  It was good.  But then out of nowhere, unheralded and unanticipated, came the image of my brother.  This was not reminiscing about good memories.  This was the dirty and difficult process of dying.  All the images, all the emotions, all the decisions, all the struggles.  It's like they were yesterday.  The waves keep coming over me again and again.  I'm at a loss of what to do so I write.

thanatos

     That case before?  Yup, it was cancer.  Started out as colon cancer, went into remission, but then she developed Stave IV ovarian cancer.  Turns out her family had a condition running through the gene pool called Lynch Syndrome (or hereditary nonpolyposis colorectal cancer if you really like medicalese).  They get colon cancer along with endometrial or ovarian cancer.  And to be honest, it wasn't that emotionally hard reading all the medical stuff.  It wasn't even that hard to role play giving the bad news.  I've done that with my both my brother's and dad's diseases.  It kinda loses its punch when it's just an academic exercise. 
     But at the end of the case, we all piled into our lecture hall to watch a video interview.  A different patient at MD Anderson who had Stage IV ovarian cancer (translation - terminal) agreed to be interviewed about end of life issues.  It was less than 15 minutes and I counted the number of times I had to physically bite down on my tongue to keep tears from spilling.  So many of the same struggles and issues that were thrown at my dad and brother.  It took three times chomping down on my tongue to create physical pain out of emotional pain.  Then a rather well esteemed chaplain and rabbi at the medical center got up to tell some stories about end of life.  And through them all, he's encouraging us to drop the notion that because there's nothing medically, meaning curatively, that can be done for patients, we still have a role to play.  And perhaps it's a role that only a doctor can play.  Our relationship with the patient is unlike any other.  And if we judge our success solely by restoration of health or not, we're going to be sorely disappointed, not mention at a high risk for burnout.  But if we treat to validate and heal the patient's spirit, that's a different measure of success.  And I'm listening to all his stories about redemption and hope and peace in the face of death and I'm struck at how that wasn't there for my brother, at least from where I sat.  It was a nasty and brutish and above all, painful death.  So if I measure success by peace or healing of the spirit, did I fail him?
     And so, too, did the doctor fail him in that regard?  We all tried to move my brother towards acceptance but there is something about the aura of a doctor.  Their word carries a different weight than a family member.  But I remembered back to a line the doc said to my brother that rings in my head clearly, "so what I'm hearing you say, is that you'd rather go down swinging."  I can picture the doctor saying it, hear his voice, and see his body language like it's on a screen before my eyes.  And my brother nodded his head 'yes'. 
     We're taught to respect the patient's autonomy.  They have the right of self determination that trumps most anything.  But as a physician, at what point are we feeding the patient's mistaken belief of a cure?  There was nothing medically that supported the last couple of treatments my brother engaged in.  And from the doctor's point of view, I guess he thought that it was more important that my brother die fighting as he wished.  There was absolutely no doubt that's what my brother chose.  I don't know that's what he really wanted.  But I don't want to second guess my brother or sit in judgement of his life.  Far from it. 
     I'm torn as to what I'll do when put into that situation.  I can't see myself encouraging someone on when there is no hope medically.  But can I see myself encouraging them to heal their relationships, to do what final things that truly matter, and to heal their soul while there is still time, when they still wish to fight against any hope?  At what point is the specter of the Grim Reaper of Death really the Angel of Mercy?  And did I really go into medicine so that at times I could be the Angel of Death?

update

     I haven't had time to be with my dad much for his MD Anderson visits.  It feels weird but I've busy with school.  Since the ball is now rolling for stem cell transplant, those are becoming more frequent again.  As such, I'm not exactly clear on the protocol they'll be using because it can vary a bit depending on the patient.  But a LOT goes into a stem cell transplant.  You don't just walk up and say, "here, pump some of dem bone marra' cells into me."

• First things first.  The donor.  And first, the donor has to be cleared for takeoff.  My dad's brother underwent a series of tests this week and from what I understand, a LOT of waiting, and waiting, and waiting.  Welcome to MD Anderson.  And the tests came back as a 'go'.  So now, he's receiving multiple daily doses of Neupogen to tell the stem cells in his bone marrow to start replicating.  And replicate they shall, even to the extent that they start to spill out into the blood.  The advantage of that is that he doesn't have to have his actual bone marrow harvested so it's a lot less painful for him.  Just a stick in his arm.  They'll start the collection process next week.  They collect daily and count the number of stem cells they get.  They continue to draw on him like an ATM until they hit somewhere in the neighborhood of 4 million cells.
• Next, the patient.  Like the donor, the patient also has to be cleared for take off.  That means imaging in the forms of a CT, a PET, and x-rays to make sure he doesn't have any hidden solid tumors that we didn't know about (you know that for them to run that test means that happens enough to people to warrant the test).  After that are some various odds and ends stuff that are really quite time consuming.  It's basically a full time job.  Among those, I have to imagine, is putting in a central line.  Usually, that means putting a catheter in the vein that runs right below the collar bone, appropriately named the 'subclavian vein' because it runs below the clavicle (aka collar bone).  That's there to infuse the chemos, the stem cells, the rejection suppression regimen, antibiotics, antifungals, antivirals, and the multitudes of blood transfusions that he'll get.  All those tests and processes start for him next week.
• Then the fun really begins.  First, they'll hit my dad with a dose of Rituxin on the 27th as an outpatient.  He got that with chemo before and other than some flu-like symptoms for a day or two, it's pretty mild with respect to side effects.  I'm not sure if he'll get another dose of Rituxin a week later, again, I haven't seen the full protocol they'll be using for him.  Then after that comes the nasties.  These are the traditional chemos that cause the nausea, chemo brain, thrush, and all-around-feeling-like-shit.  Multiple days with multiple infusions.  At that point, he's in the hospital and he'll get the stem cells from his brother.  That date is not yet set but I anticipate sometime the first or second week of October.

extrusion of pain

     Monday morning.  Brand new week.  I took a jog in the morning sun before the thermometer had a chance to flirt with triple digits.  I don't particularly like running.  In fact, after about the first mile, I pretty much hate it.  But I need to exercise and I need something mindless.  So I go for a Monday morning run.  Exercising means music and I crank it up.  And out of the blue, a line from a song hits me like a blow to the stomach.

Suddenly, you were gone
from all the lives
you left your mark upon...

     The waves of grief and sadness have been flowing over me with greater occurrence of late.  Sometimes, they are triggered by events that warrant anticipation or expectation.  Holidays, birthdays, special occasions.  Those I can handle.  I expect it and brace myself for the emotions.  It's the little ones that creep out of nowhere, like a predator stalking a prey that is unaware of the danger lurking around a corner.  Sometimes elicited by a song, sometimes by a dream, or many times by nothing at all.  Those are the ones that hurt the worst.  And they're becoming worse.  Like running while tears come down your face.  Visions of my brother's final days flash through my mind.  Prognostications of something going horribly wrong with my dad are right behind them.  Crimeny, I'm out there trying to clear my head before going to school.  Apparently 'clearing my head' is permission for something else to take that vacancy.  And then another song shuffles through the iphone of my brother with these lyrics

For my father and my brother
It's too late
But I must help my mother
Stand up straight

     That's it.  Screw this.  I'm done with running and am actually looking forward to school by now.  Exercise has done anything but unwind me.  I drive the 33 miles down to school for my group work where for two hours every Monday, Wednesday and Friday, eight of us, under the tutelage of a doctor, unravel a case and practice how to be doctors.  Pieces of information are fed to us slowly with probing open-ended questions so that we can hone our skills at each stage of the diagnosis and treatment.  This case?  Patient comes in with fatigue and unexplained weight loss.  After identifying the "problem list", we're now free to start compiling our Differential Diagnosis.  There's a bit of a pause becomes symptoms so nondescript as this patient can be damned near anything.  But I say, "anytime there's unexplained weight loss, especially with fatigue, you have to include cancer."  As the scribe today, I write that as the first line on the dry erase board.  C--A--N--C--E--R.  I know damned well where this case is going and I bet it's not going to end well.  I can't run fast enough to escape this one.

two flew over the cuckoo's nest part II

     I came home and in my best Southpark imitation, told my son, "don't do drugs.  Drugs are bad, umkay."

"Yes, dad.  I know," he responded with a sense of exasperation.

"No, you don't know.  I just came from a psych ward where I interviewed some poor guy who's entire future is now going to be spent cycling in between being homeless or institutionalized because he completely fried his brain.  Let me tell you what can happen..."

     It was sad, really.  Which is to say, a drastic understatement.  The interview was subdivided up between the various students.  By chance, I got the part that dealt with developmental history and substance abuse.  Essentially, my questions revolved around, "tell me about your childhood" or "tell me what you drink, smoke, snort or inject."  And given the case, those were the biggies.  A tragic case - a dual diagnosis of schizophrenia and substance abuse.  His demeanor was what is called a 'flat affect', probably from the medication working.  That means he used the same monotone voice to describe the grades he got as the same voice he used to tell about being sexually abused.  It was the same voice he used to tell me about the cocaine he used to make the pain go away.  It was also the same voice that he used to tell me of his plans to "hurt those who hurt me.  I didn't want to kill them.  I just wanted to make them feel the same pain as me."
     Up until the age of 12, he lived a normal suburban existence where he "didn't want for nothing.  I got A's and B's in school."  Then he moved from his caring aunt back to his abusive mother and step father.  Shortly after, substance abuse started as did the schizophrenia.  Which came first?  Chicken or the egg.  I wonder how much research has been done to show what impact substance abuse can have in creating mental illnesses.  And vice versa.  (And homelessness is clearly a mental health problem.  No amount of job training is going to change that fact.)  He still managed to complete high school and was on his way to becoming an engineer.  And I believed him.  He could rattle off dates and hospitals and diagnoses like they were written in front of him.  I couldn't tell you what I did last week but I'm the sane one.  Yet ask him to spell "world" backwards and he couldn't get past "w-o-r???".  It was like his brain worked right up to a certain point in his life and then just stopped.  No new information or thinking.  And when we began to exit the ward, we waited until an orderly could get a key to let us out.  I was at the back of the group and looked out at the ward.  I guess part of me said, 'don't turn your back on a potentially dangerous situation.'  My eyes panned across the room and saw him sitting on the couch.  Despite the lack of any emotion on his face whatsoever, he raised his hand in salute and waived goodbye to me.

too much

     "When I add up all the things I'm supposed to do to fight cancer, and I subtract all the things I can't do because of cancer.....there's not much left in the day for me to do the things in life that I want to do."  I heard this on more then one occassion from my brother.  And now, I read something similar from my dad in his blog about losing his whole rhythm for life.  For myself, I felt some of the same things this past summer went I went deep, deep, deep into my own grief.  We are creatures of habit and when that is stolen from us, it leaves us reeling.  Things that we enjoyed or took pleasure in are now bland and tasteless.  Even the rising of the sun no longer holds any sense of promise.  I have no encouraging words.  I fight my own struggles every day.  Just some lyrics from someone who lost too many people from his life and struggled with maintaining his own will to live.  It's the quintessential struggle to survive in the midst of having your life as you know it stolen from you.

The way out
Is the way in
The way out
Is the way in...

Out of touch
With the weather and the wind direction
With the sunrise
And the phases of the moon

Out of touch
With life in the land of the loving
With the living night
And the darkness at high noon

You can never break the chain
There is never love without pain
A gentle hand, a secret touch on the heart

Out of sync
With the rhythm of my own reactions
With the things that last
And the things that come apart

Out of sync
With love in the land of the living...
A gentle hand, a secret touch on the heart

You can never break the chain
There is never love without pain
A gentle hand, a secret touch on the heart

A healing hand, a secret touch on the heart
Life is a power that remains
- 'secret touch' by neil peart

countdown

T minus 20...
19...
18...
     I park the car, grab my luggage and find the bus to take me over to the airport.  Once there, I submit myself to the rather dehumanizing airport security.  And wait.  Wait, wait, wait.  Eventually, enough seconds tick off the clock to allow me to board the airplane.  There's an almost claustrophobic feel to the closeness.  All the irritating aspects of humanity seem especially exposed.  The overhead luggage never fits right and neither do my broad shoulders fit into the seat.  Inevitably, someone nearby is hacking germs everywhere and I think to myself, "great, now I get to inhale those things and get sick."  And no flight is complete without the crying infant.  I wait, and wait, and wait.
     Behind the scenes, airtraffic controllers are controlling the chaos and the pilots are going through their preflight checklist while we the passengers sit unwittingly at their mercy.  By some seemingly abitrary decision that might as well come from the clouds, we are cleared to go.  And something happens once the pilot comes over the intercom.  Something starts to happen.  The plane begins to move.  Potential energy (waiting) turns into a kinetic energy (one of movement).  The throttle kicks in while my body is forced back into the seat demanded by the laws of physics, and I am simply amazed at the brilliance of those mental giants who made flight possible.  The airplane parts from the ground and rises through the clouds.  There's almost a magical quality to it.  But of course, it's not magic.  It's all vectors.  A million things went into making not just that particular flight, but the general concept of flight possible.  And countless failures.  But we trust that the pilots know what they're doing.  That some mechanic did their job despite having a fight with their spouse.  That some air traffic controller double and triple checked everything despite battling some illness.
17...
16...
15...
     I felt some of that same awe of being propelled down the runway yesterday.  My dad is heading to stem cell transplant.  It really is happening.  Things are beginning to move.  The waiting is nearing an end.  There is a sensation of being forced back into the seat.  Gravitational forces take over.  It's all vectors now.  The way things move are no longer within our control.  But what about....???  Those questions never end.  At some point, they are answered with "MD Anderson is THE best."  Intellectually, we know that to be true.  But still, there is that crushing doubt that exists.  Yet it exists simultaneously in that same space as the awesome notion of replacing someone's stem cells with another human being's.  It's Mary Shelley's Frankenstein writ large.  Or, her alternate title, A Modern Prometheus.  They are truly stealing the knowledge of fire from the gods, or the forbidden fruit from the tree of knowledge.  What religion, or even humanistic philosophy, does not place value on the sanctity of blood?  My dad's blood type?  Gone.  It will soon be his brother's.  All the immunizations that my dad received as a child, as an immigrant, as an adult.  Gone.  They will soon be his brother's.  All the abilities and susceptibilities to the various colds and bugs that afflict some but not others?  All the immunological memory to infections in the past like chickenpox?  Gone.  They will soon be his brother's.  In exchange for eating that fruit, there is another chance at life.
14...
13...
12...

differential diagnosis part II

• 3 eyes of newt
• 3 hairs of a border collie
• 3 dashes of powdered bone
• 3 eggs from a robin
• 3 berries from a holly

Under the light of a full moon, boil the ingredients and stir clockwise precisely 30 times.  Take 3 draughts of the brew and stare into your crystal ball.  Ask the spirits in a slow and steady voice, "wwwhhhaaattt ttthhheee hhheeelll iiisss gggoooiiinnnggg ooonnn???"

     That might as well be what we do for my dad at this point.  Seriously.  To recap.  He finished 5 rounds of chemo, had improved substantially, and right before his six round, his counts plummeted inexplicably.  His neutrophils went to zero.  His total white blood cell count also dropped.  His red cells and platelets dipped ever so slightly.  But a week later both his platelet and red blood cells looked good.  So whatever was happening was specifically hitting the white blood cell population, especially his neutrophils.  His bone marrow confirmed that he did NOT have a new leukemia, a recurrence of his CLL, or myelodysplastic disease.  Besides, in those diseases, his blood counts would've looked differently.  But hey, everyone is different and you're never certain how a patient is going to present.  So to be sure, you look at the bone marrow and that confirmed it.  So that left the possibility of an autoimmune reaction where his body attacked his white blood cells for some reason or a virus.  They just posted his virus results online and they were negative.  And there's no real definitive test for an autoimmune reaction of this nature.  There's one suggestive test and my dad's results weren't even close to suggesting that it was that. 
     So for everything on his differential diagnosis, we came up with nothing.  It's possible it was a virus that we are unaware of having this effect.  It's still possible it was some sort of acute autoimmune reaction.  It's possible that it was the phase of the moon.  But we're certain of nothing.  Medicine is like that a lot of the times.  At our current level of ignorance, the disease processes are just too complex and too numerous for us to be able to understand it all.  So, you take a step back and ask, "how is the patient doing?"  Well, he's a bit more fatigued than usual and in a bit more pain.  But who knows why.  We have a match and there's no point sitting around hoping his neutrophil counts return.  The cancer will come back and some point.  It's only a matter of time.  And besides, the goal of stem cell transplant is to first obliterate the patient's bone marrow anyway.  File this little episode under "$*#($%)*" and put it behind you.  So you move forward.  There's not the luxury to sit and ponder what might be happening.  The donor, my dad's brother will be down here in a few days to begin his part of the process of donating his stem cells.  We're not sure when my dad begins.  He has a visit with his leukemia doc on Wednesday and then the stem cell doctor in three weeks.  I suspect things will start to happen pretty quickly after that.