random shots

How shall I hold on to my soul, so that

it does not touch yours? How shall I lift

it gently up over you on to other things?
I would so very much like to tuck it away

among long lost objects in the dark,

in some quiet, unknown place, somewhere

which remains motionless when your depths resound.

And yet everything which touches us, you and me,

takes us together like a single bow,

drawing out from two strings but one voice.

On which instrument are we strung?

And which violinist holds us in his hand?

O sweetest of songs.

Love Song by Ranier Rilke

update

My dad has been switched off the IV antibiotics to oral antibiotics, his blood pressure has returned to normal, and he has no more fever.  All those suggested that he was going to be discharged from the hospital today.  But last night, his heart decided to start acting up and he's been having on and off bouts of atrial fibrillation.  At least, that's what we're calling it right now.  That's based on how it feels to my dad since he's pretty familiar with this condition having been diagnosed with it back in 2006.  Given the current circumstances, they're going to play it safe and keep him there.  They've requested a cardiology consult and are in the process of getting all his cardiovascular medical records from the Texas Heart Institute down the street.  So it'll be at least one more night in the hospital.  That'll make 4 nights/5 days.

random shots

Show me beauty, but there is no peace

ghost rider by neil peart

the cliff

"What?"

"Don't look at the monitor."

"What's going on????"

I muster every bit of courage that exists within my being and grab his cold hand.  I look into his eyes and see my own fear reflected in his own countenance.  "Look at me.  Take a deep breath and breathe."

The nurse hurriedly left the room and I heard the page go overhead throughout the ER, "ANY doctor to room 8.  ANY doctor to room 8."  My brain begins to slowly add up the facts of what might be happening.

My dad's heart rate had escalated to 150 beats/min....160....170.....182.  Heart attack?  Septic Shock?  Cardiovascular collapse?  A doctor entered confidently in less than 60 seconds.  By the time he entered the room, the heart beat had slowed down into the 120s.  An EKG was quickly hooked up.  No heart attack.  No fever spike.  Normal sinus rhythm.  Just really, really, really fast.  It's not unusual for an accelerated heart rate to accompany an infection.  Just not to the degree that we just saw.  I'm still not sure what happened during that minute and neither was the doctor.  IV antitbiotics were started in short order and he was pumped full of fluids to treat the severe dehydration that was accompanying the infection and preclude any cardiovascular shutdown due to septic shock.  I'm used to those pumps going at chemo speeds which is a slow drip.  I never heard them pump so fast.  They put nearly 2 liters of saline into him in almost no time.  15 hours later, we're still not sure what's going on but he's stabilized.  The official admitting diagnosis was "neutropenic fever".  Depending on the type, patient, and underlying disease, the mortality in cancer patients undergoing neutropenic fever can range from 4% all the way up to 30%.  The ER doctor did a hell of a job and I wish I could've thanked him more.  I shudder to think what might have happened had we waited another half a day to get to the ER.  I don't think I'd have a dad anymore.

My dad has been admitted to the Leukemia Ward of the inpatient hospital of MD Anderson.  There he will be for at least 3-4 days receiving constant attention and IV antibiotics around the clock.  Confined to strict bedrest, he's not allowed to get up out of bed.  For an active guy, that's a hard pill to swallow.  But he's accepted that in order to live another day.  He's also receiving daily doses of Neupogen to boost his white blood cells.  Blood and urine cultures are pending (in a lot of these cases, the actual site of infection is never identified).  He's stabilized but not out of the woods by any stretch of the imagination.  His heart rate has slowly come down to the 80-90 beats/min range (anything above 100 is tachycardia).  His temperature is holding between 98.0 and 99.4 (fever is anything over 100.4).  His blood pressure is low (90s/50s) but holding steady.  So long as those things hold steady, he'll stay in the leukemia ward.  If the blood pressure goes any lower (he's right on the threshold), or the fever spikes, he'll probably be transferred to the ICU.  As I type this, I'm amazed at how close to the cliff we got and how damned quick it happened.  He had a bit of a cold for several days but no fever or severe symptoms.  His attending oncologist had already put him on an antibiotic, given him a dose of Neupogen, and seen a clear chest x-ray.  In less than 12 hours, that progressed to a potential life threatening infection.  The human body and its foes are an amazing and scary battlefield.

casualties

What's that, you may ask?  It's the result of an incredibly difficult conversation.  I seem to have a lot of these of late.  My wife and I have been very open about cancer with my son but he's never talked about it much.  Like any teenager, the answers to our questions tended to be monosyllabic in nature.  But one day our son started to open up about everything that's been going on.  A faucet had been turned on and so we let it flow.  Questions arose such as, "they can cure this, right?"  The hope and naivete was ripe in his voice.  I will not lie to my son and paint a picture that does not exist.  The first obligation I have to a patient is to be honest.  Surely my son deserves no less.  The conversation surely get no worse until he sprung another on me.  He asked me, "My papa has cancer.  My uncle has cancer.  What about me?  Am I going to get it?"  To the kids involved, the first casualty of cancer is innocence.  My son has full knowledge of what's occuring, to the extent that any of us can wrap our brains around it.  How can he not.  I'm gone a lot lately and under great strain.  But he's a perceptive kid and he must surely see more than that.  He sees how the outline of a skull under his uncle's skin is plain and insistent.  He sees his papa reduced from a man of labor to one who labors to merely walk.  So the picture above was my attempt with the aid of my wife to answer truthfully and honestly but still honor the emotional struggle and turmoil that it engages.

mantra

Cancer sucks.  Say it with me.  Cancer sucks.  It's become a mantra for my family.  Everytime something goes wrong, it's inevitably a casualty of cancer.  For my dad, it's not the cancer itself that threatens his life.  It's little things that can rapidly become catastrophic.  A sliver.  A simple cold.  This morning, I woke up on a Saturday expecting to do a bit of light studying.  Instead, my wife says, "I think your phone has been ringing."  I go downstairs and pick it up.  It says "3 missed calls".  Uh-oh.  All three calls are from my dad and came rapid fire.  I quickly call him.  He has a fever of 101.  Uh-oh.  He has two brothers and a sister-in-law from Canada down to help him out.  His sister-in-law is already bringing him over to my house.  It's down to MD Anderson's ER we go.  Cancer sucks.  Cancer sucks.  Cancer sucks.

playing doctor

bam, bam, bam...

bam, bam, bam...

bam, bam, bam...

DING, DONG...

Huh?  Wazzat.  I groggily rub the sleep from my eyes and try to jump start the grey matter to process what that sound is.  It's the door.  Somebody's at the door.  It's morning and somebody's at the door.  My wife has already left for work.  You need to get up and get the door.  My son beats me to it.  It's my dad.  A splinter decided to stick his finger last night and this morning decided to makes its presence known by pulsating.  Not necessarily a good sign when you can feel your pulse in your finger, especially in someone whose immune system's might is on par with France.  He has with him some really nice tweezers.  Swiss made of high quality tempered steel.  Nice.  They fit comfortably into my hands, a familiarity bred by long hours spent together.  They should.  With these types of tweezers, I was once able to dissect the vasculature of mice.  I make quick work of the splinter.  Remembering my anatomy, I look for streaking up the sides of the fingers or any swelling in the hand.  None.  Good.  I clean it with soap and water, apply some iodine, and then slap a band-aid with a hefty side of neosporin on it.  It's reassuring to me that I can do basic things while half asleep.

Later that day, I play doctor again.  This time it's for a grade.  I need to extract a comprehensive medical history from a 'standardized patient' (SP) who's pretending to either have a headache, abdominal pain, or chest pain.  Mine has abdominal pain.  Like most of my exams of late, I pretty much wing it.  I figure with the amount of time I've spent around doctors of late that if I've not picked anything up along the way, I have no business becoming a doctor.  Other than forgetting two minor questions, it goes off without a hitch.  At the end, the SP is supposed to critique us and offer constructive criticism, especially on our bedside manner (my school is making an honest effort to train humane physicians).  He states, "I'm supposed to find something for you to improve upon, but honestly, I can't find anything.  You put me ease.  You listened.  You didn't have your face stuck in your notes."  Well, this ain't my first rodeo but it still feels good to hear it back.

When I get out of the exam session, there's a message on my cell phone from my sister-in-law.  She has a question about my brother.  He has developed these little bruises all over the back of his leg.  The word petechiae jumps right into my mind.  Not sure how or why.  I think the word stuck in my mind because it's fun to say.  Petechiae, most likely, I tell them with some level of confidence.  Essentially, they are little bitty bruises where the capillaries rupture and can be evidence of several different things.  Infection, vasculitis, or in his case, most likely indicative of a very low platelet count.  In the absence of any fever or bleeds, it's nothing to run to the ER about but it's also something that the doc needs to know in short order.

A hat trick of doctor-playing episodes later, it's striking to me that all of these came to me with little conscious effort.  I'm not sure I'm any better at dealing with the emotional struggle at hand (in some ways, I think I'm worse with practice), but when it comes to basic medical questions, it's becoming second nature to me.

random stories

Traffic is beginning to build as we make our way home from the daunting visit with the oncologist.  The windows are cracked to allow some flow of air into the car since the A/C decided to stop working.  It's not the oppressive heat of summer yet but it's not cool either.  The vented windows allow the traffic noise to fill the void in an otherwise silent car.  Whenever I change lanes and check my blindspot, I get a quick glance of my brother's face set with stony silence or my mother's wounded reflection in the rear view mirror.  I wish to be able to think of something to say or do but I realize that nothing I can say or do will be able to change anything.  Best to just let the moment be, I suppose.  We draw nearer to my mother's house and my brother asks my mom, "do you have any window cleaner?  He's got muck all over the windshield."

It draws a chuckle out of me and draws me instantly back to our youth.  It's a quote from the movie Fletch.  My dad owns a lawncare business so growing up, we spent our summers working for him.  One summer my brother and I worked together.  Let me tell you, doing lawnwork in the brutal Houston summers ain't exactly exciting or mentally stimulating.  To keep it more lively, we'd constantly throw out quotes from movies like Fletch.  Even the title my brother's blog is a quote from the same movie.  And sure enough, later that evening, my mom is out there cleaning the muck off my windshield.

sisyphus

On the phone with one brother giving an update about the other brother, I say "hold on.  I've got to say good-bye," and I give my my brother a hug.

"Why did you give me a hug?"  he asks a bit surprised.
In proper smart-assed fashion I reply, "I'm just a tender hearted guy."
"It feels like you're saying good-bye for the last time."
"Nah, I'm just a sensitive guy."

That hit me hard, harder than when I first received my brother's diagnosis.  Even though it wasn't the real reason I gave the hug, hearing that statement from him effected a moment where all the frustrations, exasperations, and limitations culminated and blended into a mottled cloth of grief.  All the constructs that I had built up so far to try to keep it together began to come apart.  And truth be told, it's not like me to give hugs as I'm not the least bit demonstrative when it comes to affection.  His question was legitimate and so I tried to answer his question in my mind.  I honestly did not know why I impulsively gave the hug inititially.  It definitely was not a last good-bye despite the less than cheery doctor visit from which we just came. 

It was a complicated sense of failure on my part.  He received the first dose of Gemzar at an 80% dose.  I knew damned well that his platelets were already low to begin with and that Gemzar would obliterate them further.  But emotion trumped reason.  I fed the false hope that he would be able to receive the second dose just 1 week after the first.  I should've known better but I so wanted him to get the second dose right on schedule.  And so it was devastating to me to see the look on my brother's face when the PA told us that there's no way he'd be receiving the second dose that day despite his improved overall clinical status.  It wasn't as if he wouldn't be able to get treatment overall.  We just need to wait until his platelet counts recover.  But still, at that moment in time, I felt like I let him down.  Yes, the doctor went ahead and scheduled the chemo and gave that false hope in the first place but I should've know better.  No, I did know better and I should've been able to tell my brother that.  No platitudes or reassurances from anyone, even my brother will ever change that.

spring break - the last & final day

    My dad assumes the position in a lawn chair as I pick up the shovel.  This is already becoming somewhat routine for us.  He has six citrus trees in pots that need to get into the ground.  Those roots need a chance to spread a bit before the oppressive heat strikes in a couple of months.  Seems apt with all the chaos around.  Planting a tree is surely the ultimate sign of hope in tomorrow.  Getting these trees in the ground assumes a gravity equal to the weight of the dirt I'm lifting.  My dad wants to live long enough to taste the sweet fruit from these trees.  And my mom wants to be there to take a picture of that, I'm sure.  There are certainly enough reasons to surrender to the chaos around so you take hope wherever and whenever you can find it, no matter how seemingly small or insignificant.

     He does what he has dubbed, his 'pointy finger' routine.  He points and wags his finger where he wants the tree.  After some rearranging and second guessing, I start digging into the heavy clay.  It's hard work and the smell of sweat starts to mingle with the heady fragrance of the lemon blossoms that have already opened up.  At the bottom of the third hole, I encounter a buried piece of concrete.  Rather than risk breaking the shovel, my dad asks if I need a pry bar.  I answer in the affirmative and sit down puffing to catch my breath.  Rain has been conspicously absent so the dirt is as hard as the concrete I'm trying to remove.  Before I know it, my dad is shuffling back carrying an iron pry bar that weighs probably 15 pounds.  "Either you're foolhardy or you're feeling a lot better.  Probably a little of both."  Just 4 or 5 days ago, he'd have trouble walking 20 yards, much less carrying an object that's nearly 10% of his body weight.  (That's about 18 meters for you Canucks reading this.)  Unwilling to get my hopes up, I still begin to wonder to my mom if the chemo is already working its magic in him.  An eternal pessimist, I comment that perhaps it's just the steroid that's perking him up.  Time will tell.

random stories

This is my dad standing in front of his house, not quite through with its construction.  Though he has both a bachelors and a masters degree, he is a man used to living by the sweat of his brow.  You can take the farmer off the farm but not the farm out of the farmer, so to speak.

Here's my brother going over blueprints to my parent's house.  They built the house my parents live in with their own two hands.  They're makers.  That's something I could never do and I admire them greatly for it.  Can you imagine then the cruel irony when my dad tells me through choked sobs, "I can't even make my own blood anymore."

spring break - day 8

The 'R' part of my dad's FCR chemo completed, it's now time to move on to the first day of the 'FC' regimen.  But I'm not there for that one.  I am under mother's orders to stay away from the hospital for at least two days.  Apparently, mother's orders can sometimes trump a doctor-in-training's orders.  I am told to spend time with my wife and son since they've hardly seen me the past two weeks, spend time in my garden, and drink some beer.  Okay, she didn't say the last one but it was definitely implied.  My mom has followed my directions on how to care for the cancer fighters nearly flawlessly so I did the same with her instructions on how to care for myself.  I had dinner the night before with my family.  I had breakfast with my wife (my son rarely rises before noon on weekends).  I then puttered around in my yard taking frequent breaks to sip some beer and watch the birds & the bees.  And dispelling the notion that my presence is required or all descends into utter chaos, my dad's chemo went off without a hitch.  And other than making several phone calls and blogging, I was able to recharge my batteries as best as could be expected.

random stories

My dad, my brother and I are taking one of the many walks in an attempt to get the two exercise.  Out of necessity, it's a short one.  Due to my dad's back injury, he is hunched over.  In an attempt to maintain his balance, though, he shifts his shoulders back which results in his chest being bowed out not unlike a chicken dance.  My brother's gait is short shuffling stride due to the pain in his hips.  We are able to make it to the end of my parent's driveway - about a hundred yards one way, two hundred round trip.  Across the dirt road is a horse stable where a young colt is running and bucking with vigorous enthusiasm.  Dryly, my brother exclaims, "showoff."  My dad laughs and we turn around to walk back to the house.

the path - part II

Previously, I went over the chemotherapy arm of my dad's treatment plan.  The second arm is the stem cell transplant (STC).  Chemotherapy is pretty straightforward.  It ain't rocket science.  STC is much more nuanced and difficult so let me try to explain it as it relates to my dad as clear as possible.

1. He may or may not undergo a STC.  Nothing is definitive in a disease like cancer.
2. The reason for preparing now is that it's a Herculean task.  Insurance approval, donor match, etc all can take months.  If and when my dad needs the option of STC, the groundwork needs to be already completed.  The window of opportunity for receiving STC can be short so it needs to be accessible when necessary
3. The best potential match is a sibling.  Sibling matches result in far, far, far fewer complications than less related or unrelated donors.  So while I greatly appreciate all the offers to donate from other family members, at this point, my dad's siblings are the way to go.  If you still feel moved to contribute medically, then I recommend that you consider registering at bethematch.org.  Who knows, perhaps you can give someone else a new lease on life.  Also, give blood on a regular basis.  Can't stress that one enough.
4. STC is risky for the recipient.  There is a 10-15% mortality rate associated with the procedure.  Primary risks are infection or a complication called Graft Versus Host (GVH) in which the new stem cells recognize the recipient as foreign and immunologically reject the patient.
5. There is minimal risk to the donor.  For sibling donors there are no surgeries, no invasive procedures, just some needle sticks.  The biggest risk is boredom since it takes about two weeks and there's a lot of waiting around.
6. The follow up after STC is even more Herculean in the number of tasks.  Because the risk of infection is immensely high, he would stay in the hospital for about a month.  After that, he'd be released but have followups about every other day.  He would need to forgo any fresh fruit or veggies.  They'd have to be cooked to kill any and all bacteria.  No working around dirt (hard pill to swallow for my dad).  No animals and lots of other restrictions for at least a year.  Regular regimen of antibiotics and antivirals along with copious amounts of hand sanitizer.
7. The disease must be somewhat stable in order for the STC to have a chance to work.  If the disease is running rampant, there is little chance the new stem cells will be able to gain a foothold.
8. With that said, STC is the second option, not the first at this point.  If the chemo doesn't work very well, then STC becomes the next option.  I know that seems to contradict Statement #5 above but treating cancer is about as clear as mud.  This is why medicine is in large part an art, and not just a science.  There are no cookbook recipes to follow.  If the chemotherapy works quite well, then most likely (again, choices are always as clear as mud with cancer) he will continue with the chemotherapy.  The literature seems to suggest that response to FCR therapy is probably the best prognostic indicator we have.

The plan for my dad then is to get 3 rounds of FCR therapy which will take about 3 months.  At that point, he will have his bone marrow sampled to see how many cancer cells are present in there.  How he feels and how he's doing will also in large part determine what happens next.  Barring an unforeseen complications (a dicey proposition with this disease), what happens next is anyone's guess.  Any questions?

spring break - day 7

Today was the R part of the FCR combination my dad was to receive over multiple days.  The allergy drug benadryl was in the list of pre-meds to help prevent any allergic reaction.  From anyone who has ever used it for allergies, then you'll know it can make you pretty sleepy.  About an hour into the infusion, my dad was sleeping soundly on his side.  He then reached behind his head and started to itch with some intensity.  He wakes up, and in a groggy voice says, "I'm starting to itch."  I quickly hop up and check the back of his head.  Under the hair on the back of his head, his skin is the color of beets.  His ears are also incredibly flushed and hot to the touch.  "Get the nurse."

They halt the transfusion.  His blood pressure, heart rate, temperature, and respiratory rate are all okay.  No rash is forming throughout his body.  No signs of an anaphylactic shock type of reaction.  All good signs that this is just a mild reaction.  They quickly push intravenously another dose of benadryl along with another dose of steroid but this time at a higher dose.  They wait an hour and keep a close eye on his vital signs.  Nothing happens which is good.  The hour passes by and they begin again.  This time they infuse the drug at a reduced rate and slowly increase it over time so long as he doesn't have any more reactions.  He doesn't and the rest of the infusion is uneventful.

spring break - day 6

Everything runs late this day - the doctor, the pharmacy, the chemo.  Add to that an annoying yet equally unproductive meeting with a social worker and there's an air of impatience and urgency.  Precious time is evaporating and my brother is confined in a hospital.  Don't they realize how invaluable time is to us?  Two hours later, the chemo starts.  Only 30 minutes long,  mercifully a short infusion.  I watch the Gemzar drip and it's hypnotizing me.  It follows a pattern of drip,drip,drip......drip,drip,drip......drip,drip,drip.....drip,drip.....drip,drip,drip.  The pump then registers just 10 milliliters left. 

Outloud, I recite the slow countdown.  10.......9........8..........7........6......5.......4.......3.......2.....1.......0........  At zero, my brother's eyes close tightly to hold back tears and a fist raises up off the bed in defiance.  I squeeze his fist and in that moment, everything stops in a surreal moment.  The moment only lasts a few seconds but it feels an eternity in my mind.  My senses become supersensitive to everything around me - the temperature in the air, the look on my brother's face, the beeping of the pump to alert the nurse that the drug is delivered, everything.  I then realize that I'm probably squeezing his hand far too hard but he offers no complaint.  I let go before I hurt him.

Now we wait......

the path - part I

While I don't want to reduce this blog to just a "medical record", I do realize that some facts and information are required.  Here they are.  My dad will move forward with a two-pronged approach.  This post will encompass the first part.  He will first fight the cancer with a chemotherapy combination called FCR (see below for what that stands for).  The protocol was developed at MDACC so this group really did write the book on this disease's therapies.  It's a relatively newer protocol but the trio of drugs has been shown to outperform other modalities and is rapidly becoming the standard of care.

Fludarabine - a synthetic agent which mimics one of the building blocks of DNA thereby blocking DNA replication.  Basically, rapidly dividing cells like tumor cells need to rapidly replicate DNA.  The cell takes up this building block but it's like building a house with a defective foundation.  The DNA collapses and results in killing the cell.  It will be given intravenously (IV) on Days 2, 3 and 4.

Cyclophophamide - a cousin of mustard gas used in WWI (that's how the concept of chemotherapy was born).  It nonspecifically drops a molecular bomb on DNA.  Again, most cells have DNA and must replicate their DNA to divide so it hits the cells that divide rapidly the most.  It will also be given IV on Days 2, 3 and 4.
A note - both agents above hit the healthy bone marrow just as hard as the tumor cells so that will suppress his immune system, exacerbate his anemia, and further knock down his platelets.  These make him more susceptible to infections and bleeds.

Rituximab - finally a drug that's more targeted.  It's an antibody just like the antibodies your body would make against foreign invaders like the cold virus or a bacterial infection.  This antibody, however, doesn't recognize foreign invaders.  It recognizes traitors, ie the cancer cells.  It targets a molecule that is specifically on the white blood cells in the bone marrow and does two things.  It directly tells the cell, you've had enough, it's time to committ programmed cell death (apotosis).  Or, it binds to the cell and advertises for the immune system to come destroy it.  Since it's more targeted, less side effects.  But, since it is a biological product, there is always the risk of anaphylactic shock.  Consequently, the first dose will be given very, very, very slowly.  That's the drug he gets on Day 1 and it lasts 8-10 hours.  They also concurrently give a steroid and benadryl to reduce the risk of an immune/allergic reaction.

A cycle lasts roughly 28 days and is defined as treatment on Days 1, 2, 3 and 4.  He then he gets some time off to recover.  Approximately 28 days after the initial day, we will see where his blood counts are.  Provided his blood counts have improved to the point where's he strong enough, he will begin the second cycle of chemotherapy again receiving the FCR and then waiting 28 more days.  Throughout the chemo, he will be receiving multiple supportive meds - antibiotic (bactram) to reduce bacterial infections, antiviral (Acyclovir) to reduce viral infections, and antiemetics (good ol' ABH developed by MDACC) to reduce nausea.  Pain is managed with narcotics right now but we're hoping that need will be reduced with the chemo.  He will receive 3 cycles of this regimen (~3 months) and at that point his bone marrow will again be sampled to see how prevalent the tumor cells are.  Based on those results and the good ol' fashioned approach of "how do you feel", they will decide what to do next.  I'll go over that in the next post.

spring break - day 5

It's becoming increasingly more toilsome to find the right words to relate the stories of my brother and dad.  I'm trying to relate the beauty of their lives, their bravery and the immense pain that I see through the lens of my experience.  I REFUSE to reduce this endeavour to just a collection of medical facts about their diseases....

my brother
At the end of the day, my dad, my mother and myself are around the bed in which my brother resides.  A gentle breeze wafts through the room and the setting sun casts long shadows.  Pain lies heavily in the air like a thick dew.  Tears flow freely down everyone's face but my own.  They just won't come.  I know it's not because of some stupid concept of masculine bravado.  It's almost that by breaking down, I'm publicly admitting to my parents and brother that the end may be near.   My dad's heart is breaking for his son but I suspect the grief and fear of his own cancer is mixed in there, too.  My parents exit the rom and it's just my bro and me.  Intense awkwardness sets in due to the impotence for me to do anything to alleviate his suffering.  I offer him a pain pill, probably as much to help myself as anything.  For my own pain, I take a long, long draught of wine.  A pregnant pause of silence is followed by words and then the tears come in rivers.  Soul wrenching pain mixed with intense devotion and love.  Hopelessness and utter despair mixed with still holding to that chance, no matter how small.  An exercise in contradictions.  I will not relate those words here.  Suffice to say, I say things I desperately need to say.  I leave him with the words, "I am going to go to bed and wake up tomorrow morning with the belief that chemo will gain you a toehold.  I have to."

my dad
It's an all day event at MD Anderson with just my dad and myself.  My mom is once again torn between her son and husband.  My brother is in no condition to spend it at MDACC and neither is he fit to be left alone.  We decide to have her care for him at her home.  I'm better equipped to handle the medical stuff and she's better equipped to handle the caring and tenderness my bro requires.  We all have our critical roles to play.  From before 8 in the morning to nearly 5 in the afternoon, we are presented with a nonstop flow of information and the emotions of my dad as he begins to finally digest and truly hear the words.  Things like

high risk....we cannot wait on treatment anymore.....10-15% mortality from stell cell transplant alone....prognosis?  let's wait to see how responds to chemo.....potential life threatening infections during chemo.....go to the emergency room if.....when would you like to start chemo?

That last hits my dad like the weight of a mountain.  Speechless, he does not have an answer.  Finally the words tremble from his lips, "I'm scared."  The doctor gives him the emotional space to work up the courage.  I gently suggest starting chemo tomorrow on the same day as my brother in a sign of solidarity.  My dad recoils at that notion.  He puts his son first above himself.  He's even commented before, "I have cancer.  Now yours can get better," implying he will lay down his life to absorb his son's cancer.  But it doesn't work that way.  He cannot emotionally reconcile him having chemo the same day as his son.  So he will start the day after his son.

spring break - day 4

The chapel room replete with wood and stain glass was quiet except for the soft cries of three people as tears streamed down their faces.  My brother, his tall frame now reduced to a fraction of its former self is hunched over in a wheelchair.  Bent over him in a tender embrace that only a mother could give is our mom.  Behind the wheelchair is me, head hung low.  What else is there to do at this point?  My brother's platelets are dangerously low.  They're about 3 times lower than they would need to be to initiate treatment under normal circumstances.  There are also two areas in the lungs that lit up on the PET scan that were not there before.  But still the oncologist offered two options.  Option A was to knowingly and willingly engage in potentially life threatening chemotherapy.  Option B was hospice care.  The doc pretty much summed up my brother's fortitude and attitude when he said, "so what I'm hearing you say is that you'd rather go down swinging and still try to fight it." 

So in less than 48 hours, my brother will undergo single agent chemotherapy which may potentially subject him to a life threatening bleed or infection with the hope that maybe, just maybe the chemo can hit the cancer cells in his bone marrow just hard enough to knock them back the slightest amount without wiping out the bone marrow cells in the process.  To get there, the doc is going to titer back the dose to 80% of the full dose.  There are three basic potential outcomes. 

1. The chemo does nothing to the tumor cells. 
2. The chemo subjects him to a catastrophic adverse event. 
3. The chemo knocks back the tumor cells to give the bone marrow just enough breathing room to start their thing. 

It's walking a razor's edge.  He'll be given 6 days to recover.  He'll then be reassessed for his pain and his bloodwork.  If it turns out that Outcome #3 happens, then he'll be given another dose of the chemo.  If Outcome #1 or #2.......If ever you wanted to wish my brother encouragement, NOW is the time to do it.

spring break - day 3

Roll out of bed and after about three cups of tea, my brain starts to function.  Drop my son off at school and then it's back down to MD Anderson with my mom and dad.  We need to find out where his hemoglobin is.  I hope to get him down and his transfusion started before lunch since I have a lunch date with a buddy that I had been looking forward to.  But there's no changing the speed at which MDACC works.  It's not until after lunch that we get the results.  Two units of blood had only bumped his hemoglobin from 6.6 on Friday up to 7.9 on Monday, still below that critical threshold of 8.  Well, that would explain the extreme fatigue and pale pallor.  Part of me wonders why the transfusion didn't bump it more but there's nothing to be done about it so I just file it into the Misc. Folder of Medical Observations in the back of my brain.  He gets the orders for two more units of blood when my brother calls.  He's got an appointment the next morning so my afternoon is spent driving to get him.  Fortunately, his father-in-law is willing to drive him halfway so I only have to drive halfway to Dallas.  For that small act, I'm extremely grateful because that means we'll get my brother to bed at a decent hour.  It continues to amaze me how much effort from multiple people it takes to properly take care of a cancer patient, much less two.

My dad's transfusion is scheduled for 4:30pm, which is later than the lunch start I had hoped for but I feel better knowing the process is in motion.  I pick up my brother in Fairfield, Texas and when I call my parents about 6pm, still no transfusion.  Uh-oh.  They can't find a blood to match my dad.  My dad mentions something about an "a-n-t-i-b-o-d-y".  He's not sure what that means.  Unfortunately, I do.  My mom is angry and and frustratedly ponders, "why is it that the biggest cancer center in the world can't find a blood match?"  I don't get to be the son right now.  I can't shrug my shoulders and commiserate with my mom long distance for the phone.  At this point, I envy my oldest brother.  He came down, visited with everybody and got to relate purely as a concerned relative (not that that's easy because it's not).  And then he got to get on a plane and go back to his life.  I do not begrudge him that.  He's got his own trials and struggles to wrestle with.  Everybody does.  But, nonetheless, I still envy him.  And putting the son to the side, I formulate the answer to my mom's question as a doctor-in-training.  My reply, "the question isn't why they can't find a match.  That's not the problem.  The question is what is going on in dad that's making it difficult to find a match.  We need to bring this up Wednesday with the doc.  He may be rejecting the blood transfusions."  I hang up my phone and tell my brother, "I hate this f*#&ing disease."  But there's nothing I can do about it now so I file it away in the back of mind where I have my list of questions for the doc on Wednesday.

Regarding my brother, it's been awhile since I've written about him because it's been awhile since anything has happened.  A couple weeks back, he had the bone marrow biopsy that showed that the tumor cells and scar tissue were crowding out the regular bone marrow cells, hence the severe anemia.  We got the news from the hematologist and he pretty much said there was nothing he could do.  Back to the oncologist then.  Clinical trials are pretty much swept from the table because we can't get his hemoglobin up above the threshold for him to qualify.  And in extreme frustration, we wait.  We don't hear anything from his oncologist.  We try and try to get an appointment but the doc is out of town.  Panic starts to set in because absolutely nothing is happening.  Just last Friday, my brother receives word from the nurse that the doc is waiting for the final chromosomal analysis before making any decisions.  Ahhhh, it all makes sense now.  The doc had informed.....holy crap.  We're sitting in the waiting room for my brother's PET scan and a dad just rolls a stroller holding a child that can't be older than two years old in for a PET scan.  This damned disease is an indiscriminate destroyer.  I can't tell you how much I hate cancer......The doc had informed me that he needed to know why my brother's anemia was so bad before initiating treatment.  I just assumed once the hematologist said "tumor invasion/myelofibrosis", that was the final word.  I completely forgot about the leukemia assessment.  That takes 3-4 weeks.  So in the end, the doc wasn't ignoring him.  He was still being deliberate and methodical in his treatment considerations.  Granted, he certainly could've conveyed that better but we finally get an appointment and it'll be back down to MD Anderson for the fourth time in six days.

spring break - days 1 & 2

My spring break started with my oldest brother flying in to visit.  Originally, we intended to all head up to Dallas for a mini-family reunion but after my dad's anemic crisis on Thursday/Friday, he was in no condition to travel.  Again, my mom was torn between wanting to see her sons together and caring for her husband.  So I opted to stay with dad so she could go up.  I figured my dad and I would have a low key weekend which is exactly what I needed.  Nope.  Saturday night was a night lacking any meaningful sleep.  My dad had difficulty sleeping and so every time he stirred, I'm up out of bed to see if he needed anything.  Sunday rolls around and again, he's pale.  Despite two units of blood Friday morning, he gets exhausted going down the stairs, nevermind the struggle going up.  Add to the mix some tearful and difficult conversations, and it was a rough weekend.  I did get his vegetable garden planted but even that was a bittersweet experience.  He couldn't do anything but sit in the chair and watch me do things that he loved to do but was unable to.  Sunday night was fraught with more difficult and heart wrenching conversations and went late into the night.  The decision was made to head back down to MDACC first thing Monday morning to see what's going on because it's clear he's not going to make it until his Wednesday appointment with the oncologist.  I guess I'm getting good exposure for my future residency training because I'm functioning on about 4-5 hours of sleep a night.  I can't remember where I set my keys or wallet but at least I can still make medical decisions.

good news, bad news

Sorry for the delay but we had to clear things up with the docs this morning and then I had an exam to take this afternoon.  My dad was discharged this morning after a night in the ER.  His hemoglobin was 6.6 which is getting pretty low.  Between 14-18  is normal for an adult male.  When you start getting 10-12 it gets into the mild range, but nothing to worry about.  Dip down to 8-9 and the doc may prescribe a unit of blood if you're symptomatic (out of breath, fatigued, easily tired, etc).  Below 8 and now you're critical.  Start getting down into the 4-5 range and you start running all sorts of risks for complications like heart failure.  He got 2 units of blood last night so that takes care of any potential acute crisis for the next week.  That's the good news.

Now the bad news. His hemoglobin went from 11.5 to 6.6 in just a matter of ~18 days.  That's pretty quick considering the lifespan of a red blood cell is 3-4 months.  If he's losing that many red blood cells in just over two weeks then that means new red blood cells are not being produced in anywhere near sufficient quantity to replace those being lost.  He can't keep up with the turnover.  I hate to pile on but his neutrophils (a type of white blood cell that's a first responder to bacterial and viral invaders) went lower yet.  Anything north of 1,700 is normal, preferably 3,000-6,000.  His have dipped down to just 420 which makes him very susceptible to opportunistic infections.  So not only is he susceptible to the flu and such, but he's also suspcetible to normal bacteria that live in the nose or mouth but are kept in check by a normal immune system.  Those normally harmless bacteria could potentially become very harmful in a compromised patient like my dad.  And the platelets (the cells that form clots when you're cut) are hanging around in the very low numbers, too, which puts him at risk for potential bleeds.  Add an acutely enlarged and inflamed spleen to the mix and all these point to a volcano that's starting to rumble and is getting ready to erupt.......His disease is progressing........He was given an antibiotic prophylactically and a steroid to reduce the inflammation around the spleen and reduce the pain associated with it.  So while an acute anemic crisis was avoided (thankfully!), looking further down the road shows his disease is starting to act out in ways that are not good.  He has an appointment with his leukemia oncologist on Wednesday to decide with which treatment to progress.

Some may be wondering, why did it take so long to start treatment if his disease is progressing?  It's a valid question.  Let me first start off the answer by stating that the practice of medicine is both a science as well as an art.  There are biological truths, half truths and just plain suspicions.  Put those together with every patient being unique and you're left with art and intuition playing a very heavy role.  Keep in mind, my dad had multiple crushed vertebrae in his back.  That's nothing to sneeze at.  If he did not get those addressed, he'd be in severe, and I mean SEVERE pain.  Chemotherapy would take half a year and would preclude any surgical intervention for his back for at least that long, if not longer.  I don't think it humane to subject him to that kind of pain for that long unless absolutely necessary.  So the doctor made a decision on a patient who at that time had stable blood counts over repeated measurements and desperately needed to address the pain in his back.  He decided to have the patient get the back taken care of, recover 2-4 weeks (it's been 3) and then let's start whatever treatment we're going to use (chemo vs. stem cell therapy).  I don't second guess the doc one second on that decision and despite the acute near crisis, I still think it was the right decision.  If we had to do it all over again, I'd make the same decision without hesitation.  I realize that may be of little consolation to my dad who feels like crap right now.  But it's not a perfect clear cut path that is laid out.  We'll know more by the second half of the coming week.

from embarrassed to 'oh shit' in an afternoon

My physiology test is tomorrow and I hadn't studied for it until yesterday.  It's over cardiovascular and gastrointestinal physiology.  I spent well over a decade doing drug discovery for cardiovascular disease and probably three years in the gut so I figured it shouldn't be a complete surprise to me.  Plus, we had two group exercises and I basically answered all the questions for our group.  I crack open an old test yesterday and the question is:

The large conducting artery depicted above is developing an aneurysm in region B.  If flow through region C is 300 ml/min and the velocity of flow through region A is 100 mm/sec, then all of the following would be true EXCEPT:

A)  The velocity of flow through region C would be 100 mm/sec
B)  The flow through region B would be 300 mg/min
C)  Mean end pressure would be greater in region B than in region C
D)  Wall tension would be greater in region C than in region B
E)  Side pressure would be greater in region B than in region C

Uh-oh.  There's math and formulae on this test?  Ah, crap.  In that moment, I realize that all my experience is in clinical disease, not the hardcore physics of fluid mechanics.  This is just plain embarrassing.  I feel like I should reimburse the money I made in my career if I can't pass CV physiology.  I plow through the day getting increasingly more frustrated.  Then today, I wake up and go right back at.  I'm starting to get substantially more of the problems correct and feeling good about myself.  I feel so good, that I decide to go out to a late lunch with my mom for brisket since it's been awhile.  After lunch, I drop her off at home.  I notice my dad is home so I decide to peak my head in to see how's he doing.  He's upstairs and my mom goes up to see him.  From down the stairs I hear a very concerned voice, "Zack, get up here."

I go up the stairs and my dad is in bed at 2 in the afternoon.  Not the least bit normal for him.  I take one look at the pallor of his skin and he's white as can be.  I test his capillary refill and it's almost non-existent.  Intense pain is present in his abdomen and when asked the location, he points to the upper left part, right below the ribs.  Uh-oh.  I palpate ever so gently as they've taught me, starting away from the pain and moving towards the area fearing what I'll find.  When I get to the spot, he recoils in pain but before he does, I feel a very distinct swelling present.  Uh-oh.  The main organ that lives there is the spleen.  Problem is that Mr. Spleen isn't supposed to be palpable unless it has enlarged to 3 to 4 times its normal size.  Oh shit.  I become increasingly concerned now.  Splenomegaly is a very common and potentially very dangerous complication of leukemia and lymphoma.  I call his oncologist and leave a message for the nurse.  She calls back and tells me to get down to the emergency room.  So here I am with my mom while my dad is getting a CT scan from the waist up to the top of his head.  Once we get the results of the CT scan and the bloodwork, we'll go from there....