we meet again

     It was my last time entering MD Anderson in the white coat, at least under the provisions of this class.  My time was about up.  So it somehow seemed very fitting that as I strolled through the lobby, a familiar face out of the corner of my eye caught my attention.  It was the physician's assistant that treated my brother.  And then later while in the hospital with the attending, who should we meet but the primary oncologist who treated my brother.  Both conversations were polite and remained on the surface.  It was kind of a nice closure in a small way.

new tricks

     By most people's measure, I am definitely not the warmest and emotionally effusive person in the world.  Cold, standoffish, arrogant, anti-social, these are all terms that could be used to describe someone who is nearly a pathological introvert like myself.  It's not that I am necessarily those terms, I'm just naturally and incredibly drawn inward.  And while the sciences tend to have disproportionate numbers of introverts (we're often thinkers), medicine is the exception.  Too much patient contact tends to preclude us types.  We're definitely a minority.
    And so it's so bizarre to hear these words from a patient I recently saw say, "you have to be the nicest and caring doctor I've seen here.  I'm going to be sure to let your attending know."  Don't get me wrong.  I love to hear that.  Or, more importantly, I love to know that I'm actually doing right by the patient.  It's just not exactly what I was expecting.  Maybe an old dog can learn new tricks.

best laid plans, part III

Friday
     I stumble out of bed to check my email.  Student affairs has replied and asks if I can come in to talk.  Nearly all students live right near the school so I think that Student Affairs doesn't remember that I live a good 35 miles away.  I rush through rush hour traffic and get to school realizing that though I had intended to reschedule this exam, now that I've fought traffic in a sleep deprived state and come all this way, I'm taking the damned test.  I talk it over with the powers that be and she helps me to decide.  If I take the exam, most likely I'll do just fine.  But what about that small chance I bomb it and fail which is not outside the realm of possibility in my current mental state?  Worst case scenario is that I retake an exam sometime in May or June.  If I reschedule it, they write a whole new exam just for me.  I don't like the sound of that one bit.  If the course director writes a really hard exam and even 10% of the class fails, the course director is going to have Student Affairs all over them.  However, if they write a really hard exam and the idiot who had to postpone the test fails, well then clearly it's the fault of that lazy special student who had to postpone the exam and make the prof go through the trouble of writing an extra exam.  I decide to take it and roll the dice.
     About 15 minutes before the exam starts my mom calls me.  Preliminary first glance at the biopsy says it's not cancerous.  They got in touch with the PA and learn that fresh stem cells were going to be used on my dad.  That changes things.  Fresh work better than frozen but I presumed that since the donor was unrelated, they'd be using frozen.  I guess with the miracle of Fed-Ex and UPS they can ship them overnight on ice.  That, or the person is actually local.  Regardless, there is a reason to keep on schedule.  They also agree to run the thyroid function tests. 
     I finish my exam and trudge on over to MDACC.  We're going forward with the chemo and cross our fingers that the thyroid is nothing serious or at least manageable if it does turn out to be anything of consequence.  And just to make things fun, I stay for about the first hour of chemo.  I tell my mom that if a reaction is going to occur, odds are it's during the first part.  No biggie.  I leave.  And of course my dad has a reaction.  It was mild this time but they had to halt the infusion, give more steroids, give more benadryl and wait.  And then they start again slowly, slowly.
    So that's about how well plans work.  It's not a script so much as an overarching guideline.  There will be LOTS of bumps and diversions along the way.  It's impossible to forsee all the possibilities so much of what will be done will be reactionary in nature and decisions will be made on the fly.  That's just the way it goes so we might as well get used to it. 
   

best laid plans, part II

Thursday
      A nice day at home alone of studying in preparation for my next exam on Friday. At least that was the plan.  I get a call from my dad asking if I'd like to meet them for an early afternoon dinner, a Last Supper of sorts. I say sure and figure that I could use a break from studying. What was going to be a study break turns into a good 2 and a half hour discussion. I'm reading over all the CT results and that node in the neck is actually in the thyroid. That could mean lots of things. Most likely, it's nothing. You could pull 100 people off the street and find some abnormal node in probably 20 or 30 of them and it means absolutely nothing. But with my dad going into stem cell transplant, it takes on a different meaning. He's had increasing fatigue and that could definitely be due to thyroid problems. CLL can settle in the thyroid. Other cancers can show up. Post infectious agents of the upper respiratory tract can settle into the thryoid. Those ALL apply to my dad and could greatly complicate the stem cell process.
     While we're talking, my dad gets a phone call telling him to show up a bit earlier on Friday for a biopsy of the thyroid. At this point, I'm starting to get more than a little concerned. He's supposed to start chemo on Friday. Do we really want to be starting chemo if there is the potential for some active disease process going on in his thyroid? What's the rush since his cancer is stable? Can't we wait a week? And why in the world haven't they run thyroid funtion tests?  Lots of questions but no way to answer them right now. We come to a agreement that my mom and dad will go down there and try to speak to the PA or doc in the morning to address these issues before going forward with chemo.
      I go back home to my studying. The exam on Friday is a one shot deal. It's a short class and has one exam. That's it. Screw that one up and you're repeating the class. I have no idea as to the style of the exam and what is important or not since I've not taken an exam from this class before. So you try to just memorize the entire syllabus. You do what you gotta do.
      And a phone call from my mom that evening changes everything. Did I forget to mention my dad had a catheter placed into a major vein that morning? Well, he did. And now it was bleeding. Bleeding from a central line can be very, very bad. To put it into layman's terms, ever wonder why predators like dogs always attack the jugular vein? Because the prey bleeds out in a matter of minutes. Same thing applies here. I think I need to get a siren for my car for all these emergency trips. My dad, trying to retain some level of calm states, "we need to stop meeting like this" as we careen down the freeway. My mom replies, "we need to start timing you to see if you can beat your fastest time."
      Fortunately, the blood came from the skin and subcutaneous tissue from my dad tugging on it, and NOT the subclavian vein itself. While taking off his shirt, he thought he had a pen in his shirt pocket and tried to remove it from said pocket. Of course, it wasn't a pen but the catheter. Blood letting ensues.  MDACC cleans him up and he's clear to go.  Crisis averted.
      By this time, I'm more than a little worried about my exam the next morning. So I email student affairs asking can I reschedule it. But of course no one is checking their email that late at night. So I go to bed hoping I get a reply very early in the morning.

the best laid plans, part I

     Scientists love protocols.  It insures that one's particular experiment is carried out the way it's supposed.  Doctors aren't too different.  And so there's a temptation that the protocol is supposed to unfold according to plan.  Basically, it's like a script for a play.  It's real tempting for the patient to believe, too.  After all, who wants to go into a life or death situation and expect that it will be utter chaos?  Not exactly reassuring.  Regardless, that analogy falls apart real quick in the real world of medicine.  The beginning of my dad's experience is a prime example and we're not even at the beginning yet.  Diseases don't read the textbook or protocols so things rarely go according to plan.

Wednesday
     A meeting with the doc but I'm not there since I have an exam (of course exams have to coincide with my dad's stem cell transplant, how could it be any other way).  The CT of the head and neck picked up a node on the neck.  I assume that it's a lymph node, feel my dad's neck and think "that node doesn't feel any bigger than it usually does".  Couple that with the fact that it didn't not light up with the PET scan and it doesn't seem like a big deal to me.
    The preliminary pathology report of the bone marrow biopsy shows minimal disease that has been stable since the previous biopsies.  That's wonderful, wonderful news.  On average, his type of CLL starts to rear its ugly head by 6 months after chemo.  We're pushing 8 months now so I was starting to get nervous.  Plus, my dad has had fatigue come roaring back the past month.  I presumed it was due to the cancer coming back but it wouldn't appear so based on these results.  But the biggest reason this is good news as that the probability of a successful stem cell transplant goes up substantially when the cancer is stable and minimal.  Active disease is very, very bad so Wednesday ends with an air of cautious optimism.

soap box

     I deliberately stay away from politics on this blog, which is kinda hard given how involved politics has become in medicine.  But as I skimmed over the news the other day, I couldn't help but get more than a little angry at some politicians, who shall remain nameless, commenting, quite authoritatively and definitively I might add, about scientific and health matters upon which they were completely ignorant.  Their facts were not facts.  They were beliefs made up out of misconceptions about the way the world should or should not work.  They need to speak to some actual doctors and scientists because we crossed that unholy Frankenstein bridge a llloooonnnnggggg time ago.
     Don't believe me?  Just look at the stem cell protocol upon which my dad is about to imbark.  By my count here's the chimeric monster they've created:

1. An agent which is synthesized and is half mouse, half human.
2. A derivative of the horrific mustard gas which slaughtered countless men in World War I.
3. An agent which is collected from either a rat or horse.
4. An agent synthesized completely artifically in a lab.
5. An agent derived from a lowly bacterium in the soil.
6. A mimic of an essential B vitamin.
7. A peptide cloned from some human which was then inserted into the bacterium E. coli which then pumps it out to use in other humans.
8. Blood from one human being pumped into another.  How very vampire-like!
9. And last, but definitely not least, stem cells from one living human harvested and given to another.  The recipient no longer has his own blood!

Prometheus would be proud.  One hundred years ago, these things would be considered an abomination to either man or God.  And they'll be received in this instance, graciously and without any ethical reservations I might add, by a retired minister (how's that for irony).  Now they're used commonly.  MD Anderson alone hopes to complete its 50,000th stem cell transplant in the next couple of years.  And so I would love to have those politicians speak to my dad, or any of the other thousands of living patients who benefited from these technologies.  Are they wrong to receive it?

silence

     Lymphoma and leukemia can sap your energy or give you night sweats.  Lung cancer can make you cough up blood.  And of course, cancer mets can hurt, especially when they're in the bone.  But breast cancer?  It's just seems so innocuous and mild.  Of course, it's anything but.  But to inspect a woman's breast and feel the lump seems so routine.  (And then to pull out a ruler and measure the size of the lump seems just plain insensitive.)  Usually no systemic symptoms.  It's usually not visible.  It's usually not detectable unless you're searching for it.  And it doesn't hurt.  Incongruously painless.  That seems so metaphysically bizarre to me.  It seems like something so life altering should be accompanied by something more ominous and tangible.

countdown

Day     Date     Treatment
-13       2/24      Rituximab 375 mg/m2
  -7       3/01      Admission to hospital and hydrate with IV fluids
  -6       3/02      Rituximab 1,000 mg/m2
  -5       3/03      Fludarabine 30 mg/m2 & Bendamustine 130 mg/m2
  -4       3/04      Fludarabine 30 mg/m2 & Bendamustine 130 mg/m2
  -3       3/05      Fludarabine 30 mg/m2 & Bendamustine 130 mg/m2
  -2       3/06      Anti-thymocyte globulin 1 mg/kg & begin Tacrolimus (daily for 6-8 months)
  -1       3/07      Anti-thymocyte globulin 1 mg/kg
   0       3/08      Stem Cell Infusion
 +1       3/09      Rituximab 1,000 mg/m2 & Methotrexate
 +3       3/11      Methotrexate
 +6       3/14      Methotrexate
 +7       3/15      Neupogen
 +8       3/16      Rituximab 1,000 mg/m2
+11      3/19      Methotrexate

In addition to these, he'll also be receiving blood transfusions as-needed (every other day or every third day depending on how he's doing).  The Rituximab he's received before and out of 5 infusions, he had an allergic reaction 2 of those 5 times.  And that was at a 375 and 500 mg/m2 dose.  The three 1,000 mg/m2 doses ought to prove interesting.  Along those lines, he'll be receiving LOTS of steroids and benadryl to temper those reactions.  He's also received the Fludarabine before but at a slightly lower dose of 25 mg/m2.  He's never received the bendamustine before.

Chemo agents
Rituximab - an antibody that is part human, part mouse which destroys B-cells, a type of white cell which is also the cancer cell in my dad
Fludarabine - it mimics a component of DNA thereby preventing rapidly dividing cells from replicating thereby killing them
Bendamustine - essentially a derivative of mustard gas which torches duplicating DNA in a different manner than Fludarabine but arriving at the same result of killing dividing cells

Anti-rejection agents
Anti-thymocyte globulin - an antibody from a rat or horse which attacks T-cells, another type of white cell which is heavily involved in immune rejection
Tacrolimus - an agent isolated from a fungus-like bacterium - Streptomyces - that's ubiquitous in the soil and when given to humans interferes with T-cell function
Methotrexate - it mimics the B vitamin folic acid which is critical in rapidly dividing cells like your white cells, by being a mimic it clogs up the system and slows down the immune system overall

Immune enhancing
Neupogen - a synthetic version of a human peptide made in the bacterium E. coli which stimulates the production of neutrophils.  It's kinda ironic on the one hand to give agents to wipe out the immune system and on the other hand give agents to boost it.  But that's the art of walking the fine line of transplant.  Too much and you wipe out the cancer but killed the patient with an infection.  Too little and you leave the immune system intact but allow the cancer to remain. 

caged animal

    The patient had breast cancer.  Like my brother, she discovered it because "my back hurt."  Metastasis in the spine, you see.  How many people go in with back pain and expect to walk out with cancer?  By then, it's already Stage IV.  She's a very sweet lady and far too young.  Very amicable and pleasant, especially given the topic of our conversation.  But about 25 minutes into the visit, she starts to become restless.  She moves the bed up.  She moves the bed down.  Her answers get shorter.  Shifts to the right.  Pauses.  Shifts to the left.  Leans forward with a grimace shooting across her face.
     I know this look all too well.  It's the look of a caged animal.  It's the look my brother had far too many times.  It's a pain spike.  She's trying to get comfortable but can't.  When they hit, they hit FAST and they hit HARD.  And then the patient pops the oral pain killer but it takes a good 45 minutes to kick in.  And that ends up being the longest 45 minutes of their life.  I'm relating this all to her hoping to validate how she feels, that by talking about it, it might lessen the intensity just a smidge.  And she nods her head in agreement.  And she seems a bit surprised that someone else is on intimate terms with pain spikes such as she experiences. 
    I don't wear the grief of my brother and the struggles of my dad on my sleeve.  After all, a patient surely doesn't want to hear about my problems.  Plus, we're trained to be professional and all that.  But I also don't shy away from it.  Empathy is a hard thing to do.  When appropriate (and it's an ever shifting art of determining when it's appropriate), I communicate my own experiences with cancer to help bridge that gap between doctor and patient.  That at some small level, they are not alone in their pain.

flat bed truck

     My dad gestured out the window of the car to the lane next to us.  It was a gold Honday Odyssey, just like the one that ferried my brother back and forth countless times to MDACC.  "I half expect to see your brother lying down in the back all perched up on his pillows.  The last times we had to hurry down to MDA were trips from hell.  The day he died.  The day of his funeral."
     And right next to the van was a flat bed truck.  This symbol, perhaps, requires some explanation.  Though it seems a lifetime ago and in many ways it was, the symbol of the flat bed truck was born just about a year ago.  It was actually right about this same time of the year.  My brother was still alive, though his condition was beginning to deteriorate, and my dad had just been diagnosed himself.  I went over to my parents' house and my mom said to my dad, "tell him about your dream." 
     Now my dad has never put much stock in the meaning of dreams.  Just random rumblings of the white and gray matter.  Me, on the other hand, I subscribe to the notion that quite a lot can be gleaned from them.  So to humor me, he begins his dream:

You and I were riding in a flat bed truck.  You know the ones, the diesel pickups with the bed replaced with a flat bed to haul heavy equipment and stuff.  In the back, your brother rode on a mattress.  He looked pale and wasn't doing well.  You were driving and we were on these curving and hilly roads.  And you started to drive faster.  I told you, "Slow DOWN."  But you kept going faster still.  Again and again I told you to slow down.  I finally began yelling at you, "SLOW DOWN.  THIS ISN'T SAFE.  SLOW DOWN!"  And I woke up screaming.

     "You really don't think there's anything to that dream?" I queried.
     "Who knows," was his reply as he shrugged his shoulder.
     "I think I can take a crack at this one...."
    
     Needless to say, the image of flatbed truck dangerously careening down the road has become a staple image for my family.  It's that feeling that things are moving regardless of whether you want them to or not.  The disease, the treatments, the emotions, the struggles, life & death stuff. None of that asks you if it's safe or if you're ready.  At the time, my dad didn't want to go back to the family doc to get his bloodwork repeated.  He didn't want to go to an oncologist.  He didn't want to go to MD Anderson.  It was all moving so fast.  But it's like the hide-and-seek game.  Ready or not, here it comes. 
     And that flatbed came roaring down the highway again yesterday.  Friday morning began with a steady rain which began early in the morning hours.  I was at my desk starting to watch a lecture, glad I wasn't out fighting Friday morning rush-hour traffic in the rain.  Until my dad calls me.  His voice is gravelly and rough.  He sounds horrible.  He had a bit of a cold that started a day or two ago but got substantially worse over the night.  No fever but the aches and pains were setting in. 
     So out into the rush-hour rainy traffic we headed to run down to MDACC yet one more time.  He had just started Levaquin, a big gun antibiotic and once we got down there, they ran some saline up each nostril and swabbed the back of his throat to culture for a couple of viruses, influenza (cause of the flu) and RSV (cause of a severe cold or pneumonia, usually in infants).  Fortunately, each of them were negative because they could be devastating to him, especially this close to the stem cell transplant.  But this morning, he felt incremently better.  Still no fever so no trip to the emergency room.  At least that's something.

 

four letter word

     Ever heard of Pandora's Box?  I'm guessing so.  It's the ancient Greek mythological story about Pandora.  In case, you're fuzzy on it, here it is in a nutshell.  Prometheus steals fire from the gods and gives it to Man (and that alone is a whole separate story).  Zeus, the supreme diety, is not pleased.  Fire is the work of gods, not mortals.  So Zeus collaborates with several other gods to create Woman.  They give her beauty, grace, charm.  The whole nine yards.  'Pandora' in Greek means 'all gifted' and that is what she is.  Prometheus isn't stupid, though, and Zeus knows it.  So he gives Pandora to the brother of Prometheus, Epimetheus who is apparently a bit slower on the uptake.  Despite his brother's warning, Epimetheus is struck by her beauty and gifts.  He accepts her.  Unfortunately, though, Pandora also comes with another gift from Zeus - the infamous box (though in the greek it's actually a jar but that's not important).  It is alleged to contain many gifts but she is instructed by Zeus himself to NEVER open it.  Well, of course curiousity gets the better of her and she opens it.  And then the malice and revenge of Zeus is inflicted upon Man (and Woman).  Out of the box flies demons of all nasty sorts - toil, illness, vice, etc.  But down in the very bottom is one final one - Hope. 

     The wonderful thing about the Greek mythologies is they touch a very elemental part of what it means to be human.  These stories appeal to our very core that spans time and distance and culture.  The danger is to oversimplify these stories into simple truths or axioms about what one should or should not do.  Basically, "and the moral of the story is...."  If they were simple truths, they wouldn't need elaborate and rich stories to illustrate them.  The stories are complicated because life is messy and complicated.  This one often gets oversimplified into "curiosity killed the cat."  Misses the mark for me, at least at this moment in time as I wrestle with my own demons.  The scent from the lemon tree is just starting to imbue the air and I'm watching the sun set while sipping a Shiner.  Such a pleasant scene juxtaposed against the thoughts in my mind.  I'm pondering my dad's stem cell transplant, how it overlaps directly with my licensing exam, and that I'm always shadowed by the grief of my brother.  What will keep me going?  Hope?  That's a four letter word in my family.  Besides, it presumes that things will go well.  They didn't go so well for my brother.  So what then if it goes the same for my dad?  No, I don't believe in hope.  But there it remains.

     And then that's when the myth of Pandora hits me.  Perhaps I've been misunderstanding that word.  Maybe it's become too loaded with connotations of rosy outcomes.  Because when the rosy outcome is death, what hope is there?  That definition and meaning fails.  Pandora had it right.  To know hope, and I mean to truly understand what hope means at the most primal level, means battling all those other demons that came out of Pandora's jar.  It's something that somehow drives the click of the next gear turning.  It's what drags me out of bed every gloomy morning.  Something does and it's certainly not an expectation that things will work out.  That's just wishful thinking because many times things don't work out for the best.  It's more akin to a grim determination.  It's a spark of life that ignites because of the demons.  Hope cannot exist without the suffering.  They are two sides of the same coin and as such, essential to the human condition.