pain

     My brother experienced severe pain.  A LOT of pain.  Pain was what sent him to the doctor where he received his death sentence.  So from his diagnosis until a few hours before he died, pain was ever present.  I can hear people's minds running, "if that was me, put me out of my misery.  I don't want to suffer."  Nobody wants to encounter that kind of pain.  Even our dad, in the midst of fighting his own grim battle told me that he will not suffer like that.  He will elect to die.  But my brother did suffer.  A large part of y'all may think that was due to a failure on the part of the medical establishment.  Maybe.  If so, then I would share some of that blame.  I accept that if it's true but I believe it to be more complicated.  I replayed the scenario over in my mind.  Over and over and over.  His grimaces, his walk hitched up short by the tumors present in hips, his limited range of motion of his shoulder, his grunts at the end when he could no longer talk.  I see these in my mind's eye like they were yesterday.  I'll carry those scars with me the rest of my life.  My own pain, though of a very different beast.
     At every doctor's visit, he had to rate his pain from a 0-10 scale.  0 is no pain.  10 is the worst pain of your life.  It's a standard way of assigning a quantification to a subjective quality like pain.  He NEVER rated his pain a 10.  I finally asked him, "what would it take to be a 10?  You look like a 12 from where I'm sitting."
     His reply?  "I think of some soldier who has his leg blown off and is bleeding out.  That's a 10 to me.  I don't have that so I'm not a 10."
    "Wow."  That's the only response I could muster.  Trying to explain how that soldier would be high on adrenaline and shock to blunt the response was useless.  He was clearly in severe pain.  But not a 10 to him.  It was that simple.  When a pain spike hit, he would reach for tylenol, freakin' over-the-counter tylenol at "extra strength".  He'd do that before reaching for morphine. 
    "That's like shooting a bb-gun at a tank," was my clinical advice.  "I take more when I get sore from backpacking."
    Not wanting to fail him, I strongly suggested that he try an antidepressant to assist in managing the pain.  There was data at the time that some of them could blunt musculoskeletal pain, similar to the type of pain that he had.  Cymbalta has subsequently been approved by the FDA for pain, regardless of depression status.  His response to me?  "I don't want to take a happy pill."
    So why was he in pain?  Did the doctor fail him?  Did I fail him?  I don't believe so.  The reason was two-fold.  First, he disliked medicine.  He took so many pills who could blame him for getting sick of all the side effects.  Pills, pills, and more pills.  But bigger than that, he never accepted his diagnosis.  He never reached that stage.  He refused to.  When someone close passes, there's a natural inclination to only remember the good things about the person and gloss over the difficulties.  There's a temptation to turn the memory into a myth.  The eulogy can become a mythology.
     But my brother was human.  He was a good man, but as human as the rest of us.  He had his own weaknesses and shortcomings.  Pain was a result.  Was it strength that kept him fighting and consequently in pain?  Or, was it weakness at an inability to come to terms with his impending death?  Harsh words, perhaps.  I feel I earned the right, though, to be able to ask them.  In all honesty, I don't think it's that black and white.  He was in pain because he fought.  He fought because he wanted to live.  He wanted to be with his family.  He also couldn't accept the inevitability of his diagnosis because he wanted to live.  Because of that, he was gone from his family a lot while he was receiving treatment.  Some of that treatment at the end would have been considered medically futile, in my estimation.  But he still did them.  Lots of shades of gray in there.  Strength.  Weakness.  Will to live.  Acceptance of death.  Do those terms even mean anything anymore?  Perhaps they are two sides to the same coin.
     So I ask those same questions of myself.  What would I do?  How much pain could I endure?  How much strength would I have?  What weaknesses of mine would be exposed?  What would any of us do?  And could anyone be faulted for making their choice?  After witnessing his struggle and suffering, I am not so quick to make a decision for myself, or for anyone else.  For him, it came down to this.  He chose pain in exchange for wanting to live. 

rash

     This was taken with my brother's iphone.  It did end up coming to me.  But in order for this phone to be useful to me as a doctor-in-training, I had to wipe it clean.  Reset it.  Start over.  In other words, I had to remove any trace of my brother from it and make it mine.  All the text messages to his wife and kids.  All the photos.  There were some of him and our dad working.  He actually looks healthier than my dad which I guess makes sense given that my dad also had cancer, though we didn't know it at the time.  His songs.  And his voice.  Ouch.  And anger all over again.
     The brief movie is from the Rush concert last week.  My wife and I ventured out to Austin (sans son strangely) and the seats ended up being the best seats I've ever had, and I've been to a lot of Rush concerts.  If you've never been, a Rush concert is an experience in sensory overload in every sense - the music, the lyrics, the visuals, the energy, the intensity.  I felt alive.  But after?  That was another story.
     The lead singer wears a shirt with a self-deprecating joke of their name.  It says 'RASH'.  Being a doctor-in-training, I had to have that shirt, courtesy of my wife.  And the image struck me.  Have you ever had a rash?  And I mean a bad one.  Like getting into a bed of poison ivy.  Your skin is raw and hypersensitive to the slightest stimulation.  Any amount of heat or sunlight brings an intense aggravation to already overloaded pain fibers.  And you want so desperately to scratch it.  But the itching just makes it worse, doesn't it?  And that's how my anger feels now.  I feel like a rash that's been rubbed raw, super sensitive to any relation to the world outside me.  So the exposure to something as intensely pleasurable and moving as a Rush concert (the last time I had tickets were a present from my brother - his son went along for his first Rush concert), inevitably pulled off all the scabs and opened the blisters.  The anger has begun to evolve and I guess that's something.

witness

I can still remember the very end.  I wanted to watch them roll my brother's lifeless body out the door and to the van.  I'm not sure why.  It felt a moral necessity, to be there as a witness to everything - his last pain, his last breath, his last trip out of the house.  So I held the door open as they made their way out in the half light of morning.  I stood their numbly not knowing what to do next.  The nurse then turned to me and said, "you did a good job."  That floored me.  I usually don't crave, or even need reassurance.  An intuitive compass, so to speak.  But when she told me that, I teared up and we hugged.  To hear it from another medical professional, especially one in a hospice setting, meant something to me.

pandora's box

     "You realize that he gave you a gift, right?" my wife asked of me.  "You learned more about being a doctor from him than any training could provide.  You do know that, don't you?"
     "I know.  I've thought a lot about that already.  A lot."  I had already run the concept by my dad.  He didn't like the word 'gift'. 
     "Josh didn't give it as a gift.  He didn't want cancer.  He didn't make a conscious decision to make this available to you.  You had a choice and you made it," was my dad's response.
     "Yeah, but he allowed me to do it.  He didn't have to.  It had to be hard to have his little brother knowing every single bodily function about him.  He didn't have to do that so he made a choice, too.  Maybe gift is not the right word.  I don't what the right word is, either.  Opportunity sounds close but upon examination is soooo far away.  That kinda bothers me that I can't come up with a word for it."
     "But it wasn't a gift."
     "I do know that when I was pouring out my heart to him, I thanked him for allowing me to walk with him.  Because the fact of the matter is I did learn enormously about being a doctor from this experience.  My future patients will absolutely benefit from that.  So gratitude was involved which is usually the result of a gift.  But you're right.  Gift isn't the right word."
    So what do I call it?  What did my brother bestow upon me?  Something occurred.  It seems a strange twisted world in which such depths of pain are required for something akin to a gift to occur.  Did I have to open Pandora's box in order to learn hope?  Why does it require tragedy to move us so?

....here it comes

     My dad visited with his oncologist yesterday and some things were said. Much I knew I already but my parents did not. That which I didn't know, I guessed pretty close. Some, though, not even I was expecting. I did this with my brother, too. I read the literature. I knew what was in store. But then I could not say anything. My brother didn't want to know the odds. Always a movie buff, my brother recalled Han Solo's line of "NEVER tell me the odds." But it came out eventually. And it feels like it's happening all over again. This time, I didn't tell my parents because I wanted them to hear it from the doctor, not from their son. I didn't want to be the one bearing hard tidings again. Plus, the doc knows a lot more than I do.
      Clinical oncology is a subtly nuanced art. It has to be due its complexity and the fact that there's so much we don't know. I'll try to do my best to explain my dad's plight in understandable terms.

• His cancer arises from a type of white blood cell (lymphocyte) called a B Cell. A B Cell's job normally is to fight infection, mostly by the production of antibodies (those are what you generate in response to immunizations and infections which allows your immune system to 'remember' the invader).
• B Cells are produced from stem cells in your bone marrow and exist as clones of each other. They don't live very long. Consequently, they are constantly being produced and turned over. At some point, one of his B Cells mutated and formed a cancerous cell that becomes immortal. It just keeps dividing and dividing, but not owning up to any of its responsibilities as a member of the immune system. Because it just replicates endlessly, it crowds out other stem cells that are responsible for making my dad's red blood cells, platelets, and neutrophils (another white blood cell that is a first responder to infections, especially bacterial). Reduced numbers of these cells make him anemic, at risk for a bleed, and at risk of infections, respectively.  We've already experienced 2 out of those 3 life threatening risks.
• There are LOTS of different reasons for the immortalization process - viruses, mutagens, random mutations, etc. We don't know what causes it in CLL. Current dogma suggests that multiple hits occur such as genetic susceptibility, exposure to a mutagen/virus, and an impaired mechanism to fix/destroy the mutation. A royal flush of deadly proportions, so to speak.
• CLL is broadly categorized into low, medium and high risk based on a multitude of factors - clinical presentation, blood counts, chromosomal abnormalities, genetic mutations, etc. We do know that my dad has several genetic/molecular abnormalities that put him in the high risk category. One study I read suggested that median survival time was 3 years from diagnosis for those in the high risk category. That means that half of the patients have died by 3 years.  The nuance comes into play here. MDACC's data is suggesting that how one responds to their chemo regimen is also a big determinant of prognosis. We do not definitively know my dad's response yet, nor will we until the 6 rounds of chemotherapy are complete.
• Time to progression is a measure of how long a patient can go after receiving initial treatment before their cancer begins to act up again. Median time to progression is a measurement in which half of the population lasts that long. Based on my dad's molecular markers, that's 6 months. That means if you were to take a population of people with a disease similar to, but not identical because each patient is unique, then by 6 months half of the people would have had their disease flaring up again by 6 months. I don't kow what percent make it to 24 or 36 months, though some patients do. We don't know why some do and some don't. That's where the response to chemo may come into play.
• My dad could go 6 to 36 months after chemotherapy is finished without any major complications.  Longer?  I don't know.  It is reasonable to then begin to expect progression of the disease in the form of infections, critical anemia, bleeds and ultimately death.  There are second line chemotherapy agents but they just don't work very well. 
• Add all of these up and it is very prudent to begin to prepare for a stem cell transplant. Some may ask, why not go directly to a stem cell transplant?  It takes time, especially to find a donor.  Out of his 3 siblings tested so far, none are a match.  We're still looking.  The chemo buys time for that. It's also greatly improved my dad's condition. Even though he probably doesn't feel like it has improved his quality of life, when this all started, he couldn't walk more than 20 feet due to exhaustion. He's able to do much more than that now thanks to the chemo.
• I would encourage everyone to register for Be The Match.  If not my dad's, you may save someone else's life.  The risk to the donor is almost non-existent.  Boredom is about the biggest risk as all sorts of medical tests are run on you.  The benefit to the patient means life.  Seems a fair trade to me.
• This was all a huge bomb to my parents.  Perhaps I was wrong for not correcting their false expectations but what's done is done.  I'm ok with my choices.  Regardless, it is going to be a very rough road ahead for my dad and my mom.

So less than a month after their son died from cancer, my parents are faced with another mortal struggle against cancer.  In the blog before, I suggested that it felt a lot like my brother's situation.  A lot of that is true but there is one crucial difference.  Stem Cell Therapy represents a curative hope.  Any hope that existed for my brother resided only in his mind.  His diagnosis was a death sentence.  He was proffered no hope of a cure from modern medicine.  That's a HUGE difference and about the only thing I have left to hold on to.  Be The Match.

ready or not....

     Strolling up to that expansive complex, he is waiting out front me.  The valet workers are bustling back and forth rolling patients in their wheelchairs from the cars driven by their loved ones.  "Hello," I say.
     "It's been awhile," he says slowly, each word pregnant with much more meaning.
     "Yeah.  I just needed to step away for a bit.  Needed to mull things over."
     "I figured.  Are you ready?"  He understands, how can he not, but in his eyes lies a future I'm not wanting to see.
     "Do I have a choice?"
     "Yes and no.  Every man has a choice.  Thou mayest.  Or not.  Timshel.  You should know the story.  But in so far as you are called to do the right thing, how could you walk away?"
     "I haven't even been able to get up from getting knocked down yet.  I used up all my reserves on my brother and school.  I don't want this to be happening."
     "None of us do.  But it is happening all the same.  You do know what is in store."  The last thought is almost a question but really more of a statement.  Of course, he and I both know what is in store.  He is the doctor side of me.  He knows much of what is about to happen, even if I'm not ready to face it.
     "I know."  That last reply of mine is said out of exhausted resolution.  And the journey begins anew.  I must figure out how to still grieve my brother while preparing for my dad's struggle.

the problem with anger

     What would you do if you awoke angry for no immediate reason?  Probably pass it off to 'waking up on the wrong side of bed.'  What about 2 days?  What about 3 or 4 days?  What about every single day?  An anger that stains and warps everything it touches.  An anger that is ever present.  The rising of the sun is not a joy to behold to as it once was.  It's an irritation to me.  What am I supposed to do with that?  Every day requires a force of will to get out of bed.  I go through the motions.  I go downstairs and make my tea.  Last week, I'd sit outside and force myself to greet the sun while drinking my tea, hoping that the combination of sun and caffeine would improve my sour mood.  This week, I drink my tea and then greet the sun by doing sun salutations, hoping that the dripping sweat and even breathing will expunge the anger.  It hasn't helped but I go through the motions.  I then head to workout and punish my body.  On the surface, I tell myself that I'm doing it to get into shape in order to go on our annual backpacking trip with my son (and hopefully my nephew this time).  That's true on the surface and certainly an added benefit.  But below the surface it's really about keeping my anger from consuming and destroying me.  Without that physical exhaustion, I fear I'd have far, far too many holes in my walls put there by my fists.  That and two broken hands.  So I go through the motions hoping that something will eventually grow that's worthwhile.  Meanwhile, I'm left dancing with this anger.

eat, drink, and be merry

http://diabeticmediterraneandiet.com/2011/06/15/book-review-zest-for-life-the-mediterranean-anti-cancer-diet/

The lifetime risk of developing invasive cancer in the U.S. is four in ten: a little higher for men, a little lower for women. Those are scary odds.

Scary indeed.  My immediate family has already hit that mark.  Overachievers, I guess.  One might expect that I'd be inclined to change my diet.  I go back and forth on that one.  On the one hand, there is a decent amount of data out there showing that adhering to a mediterranean diet is correlated with reduced cancer rates (among other diseases).  On the other hand, my brother had no risk factors.  His BMI was less than 25 (a rarity in these days), no other comorbidities like diabetes, never smoked, never drank, nothing.  So part of me is tempted to take a bit of a fatalistic approach.  If it's there, it's there.  I might as well enjoy my decadent food.

opening the wound

     It's the morning just after my brother died.  The hospice nurse pulls up perhaps around 5 in the morning.  I don't know the exact time but the sun is not yet up.  I shuttle my mom and my niece out of the room where he lies now still, never to draw breath again.  I figure that my niece doesn't need to see the grissly process of the nurse pronouncing her dad dead.  Shortly after, the nurse by law is required to dispose of all my brother's narcotics.  I gather them all up and deliver them to her in the kitchen. 
     "Wow.  That's a lot." she observes as I set them down.
     "I wasn't kidding when I said that we tried everything."  Hydrocodone, oxycodone, various doses of morphine, methadone, fentanyl, hydromorphone are all present as a testament to the pain he suffered.
     "I noticed there are cats in the house.  Do they have any cat litter?" the nurse asks.  The protocol is to wet the pills and add them to cat litter to prevent their being distributed at places like the local high school.  The number of pills stacked far exceed the amount of cat litter she brought.  I go find some more cat litter and then just plop onto the floor to observe the disposal.  Someone has to witness it.  Well, someone has to sign that they witness the disposal.  I figure I might as well watch and the floor seems as good a place to sit as any.  What else am I going to do?  What are you supposed to do after just watching your brother die?  At that point, my sister-in-law walks by and sees me on the floor with my head in my hands.  Clearly, I must not look good to her eyes.
    "Are you ok?  Do you need me to do this?" she asks.
    "Nah, you go be with the kids."  She is moving back and forth between her daughter and son, consoling them as best as one parent can.  I figure the least I can do is save her this mundane task.  My brother is dead but there are still protocols to be followed.  It's just so surreal.  The nurse finally finishes up and on the form I throw my scribble which passes as my signature.  With the length of my last name, it became a classic illegible doctor signature long ago.  On the form, I glance at the other notes the nurse wrote.
     Under "Disposition" is written the words "somber, quiet".  Seems accurate.  Grief has indeed paralyzed us.  Under "Death Witnessed by" is written "Wife, brother."  Somewhere in a county records storage, there resides a form that details the death of my brother and my signature is on it.  It somehow seems a fitting and painful testament.  I loved my brother deeply and did everything I could to help.  And yet the knowledge of that will haunt me for the rest of my days.

     Now it's time to start exploring those memories and stories that just won't go away.  Some bring waves of fondness and the sorrow at the loss.  Others, like this one, stick in my craw and don't dislodge easily. 
     It was the night of my brother's death.  He had a pain spike early in the evening.  A bad one.  I did everything the hospice doc told me to do.  It wasn't enough.  I had two options, well three, really, if you include trying the same thing again and expecting different results.  I could quickly rule that one out.  I could call the triage nurse, have her page the doctor, and then wait for to hear back.  We didn't have time for that.  My brother was in pain.  Plan B?  I could do my own thing.  Earlier in the day, the nurse pretty explicitly told me that the doc definitely didn't like my way.  The concern was rather strange and possibly not fully communicated but came down to a "toxicity issue with chronic use".  This wasn't going to last long enough for long term toxicity to be an issue.
     So I brought up my plan with the family members at hand - my sister-in-law, my dad, and my mom.  If my brother's pain was not brought under control via the doctor's method by a certain time, I wanted everyone's permission to go to Plan B.  I needed to know if they were ok with it.  Now was not the time to sow the seeds of regret and I sensed some hesitation in my dad.  Or, possibly I was projecting my own doubts and fears.  I certainly had my own.  Everybody agreed.  The agreed upon time came and went and my brother's pain was still not under control.  Plan B.
    This is not a story about my helping my brother.  This is about my own sense of shortcomings and my mortal fear of doing him harm.  At some point, I walked outside and called my wife back at home.  I made a demand of her that I've never done before, from her or anyone else.  I asked her, "tell me that I'm right.  I need to hear the words.  Tell me that when I make medical decisions, I'm always right."  I needed reassurance like I never needed it before.  And I hope that I never need it again.  Don't get me wrong, when I don't know or am uncertain, I am quick to ask for help.  I ain't too proud to beg, so to speak.  I know my limitations. 
     But right then and there, I needed to hear the words.  Logically, I knew my proscribed course of action would work.  No, that's just hubris.  I hoped it would work.  Or, maybe I did know.  Who knows?  That logic needed some emotional backup, though.  About a few months before all this occurred, my brother once told me in the middle of a rather heated discussion (which is a gross understatement), "you're going to be wrong one day, and I hate to see what that's going to do to you."  He said the words with a bit of venom and it did cut deep.  I guess those words hung around with me until that very night.  I knew at some point, I'll make an incorrect decision but I never imagined it'd be with him.
     I was stuck. Waiting was not an option. Allowing him to suffer was not an option.  Getting it wrong was not an option.  That night would NOT be the night I got it wrong.  If I was wrong, it'd destroy me.  Likewise, if I let him suffer in pain and followed the doctor's original path, it'd destroy me.  Neither option would allow me to live with myself.  I see the reason why we're not supposed to treat family members.  I had to be right, more so than at any other point in my life.  My brother depended on it.  So I did what I thought was the best course of action and my wife reassured me.  From where her confidence in me came, I have no idea.  I never asked her.  I'm a bit afraid of the answer.  But she was right.  Within a short time, his pain subsided.
     As I write this, I now realize why this story has haunted me.  It's not, I repeat not one remembered and told out of confidence.  Au contrarywise.  I was utterly terrified of his prediction coming true that night.  I didn't know it at the time, though.  That fear was displaced by the overwhelming grief of losing him.  It's just now resurfacing.  I'm just now remembering all the other emotions that were felt leading up to the point.  It was all such a blur of pain and sorrow and agony.  One demon exorcised.  Many, many, many more to go.

and it begins

That post before?  I'm guessing, and I have to guess now since he's been cruelly ripped from me, that post is where my brother would've emailed me, "yeah, sometimes you go too deep and it's going over everyone's head, myself included.  I have no idea what you're talking about."  That brings a sad, sad smile to my face.  We were so very different but grew so close.

below the surface

On the edge of sleep,
I heard voices behind the door
the known and the nameless,
familiar and faceless,
my angels and my demons at war.
Which one will lose - depends on what I choose
Or maybe which voice I ignore.
- double agent by peart

There are good days and there are bad days.  Which direction a day will go does not reflect a choice on my part but is instead the result of an utterly capricious randomness.  It's hard to make plans for the day ahead when life keeps throwing bombs at you.  It's too easy to fall into apathy when I have no control.  But I have learned that when I start to dream, my subconscious is telling me something and it would behoove me to listen.  Some action on my part is still required.  My dreams, though, are usually bizarre and require a lot of effort to unfold before their meaning is derived.  But when I wake up from a dream where the dream is as simple as I'm crying for the loss of my brother, that doesn't exactly require a psychoanalyst to figure out.  Clearly, there is something more down in there that needs to come out.  I expected the memorial to satisfy whatever that is but it obviously did not.  My gut is telling me that there are more stories about my brother, his process of dying and my reflections therein that need to be told.  This ain't going to be easy.  I can see why my dream was telling me to prepare for more tears.

who was my brother?

a copy of what I read at my brother's memorial service:

Who was my brother Josh?  How do I distill his essence down to who he truly was?  He was a brother, a son, a husband and a father.  But a genealogy tells nothing of the manner in which a man chooses to live out his life.  So into the dark recesses of my memory I went in search of a memory that would sum up who Josh was.  But how can just one story encompass a man’s life?  So I ask that you please indulge me three stories from the early, middle and latter stages of his life. 

First Story.  As kids, we’d fight as brothers tend to do.  But we didn’t fight like most brothers.  Or, I should say that at least Josh didn’t.  When anger would get the better of me and I’d attempt to rain down blows upon him, he wouldn’t hit me.  Being the older and bigger one, he’d just pin me to the ground or use those long arms to put me in a bear hug turning my aggression into impotence.  He’d calmly hold me down and say, “I’ll let go when you’re done.  Are you done?”

Second Story.  Josh went to college, got himself an education, met his soul mate, and then decided to follow in our dad’s footsteps by not using his degree at all.  He fell in love with woodworking.  He fine tuned his craft until he built absolutely gorgeous kitchens for his customers.  But he’ll be remembered most for the things he built for those he loved – the bed in which his daughter Katelyn rests her head to sleep every night, the bed in which his son Ethan puts his head to sleep every night, nevermind all the additions, nooks and crannies that he added to their house, and much of my parents’ house was built with my brother’s help, especially the cabinets which hold their dishes.

Third Story.  During his battle for life, there came a point where something suspicious arose on his tonsils.  So the doctor removed them.  While he slowly recovered from the anesthesia and surgery, he would float in and out of consciousness.  He had been put under, had his throat scraped and his tonsils removed.  And do you know what he first said during one of those brief periods of awakening?  No complaining, no expression of pain, or even a request for water.  No, in a scratchy and soft voice he whispered “Happy Birthday,” to my mom.  The surgery occurred on my mom’s birthday and he remembered to say happy birthday in a drugged state.  How many of you would remember to wish your mom happy birthday in the midst of all that?

And so from these stories, a picture of who Josh was begins to emerge.  He was a kind, gentle-hearted soul.  Slow to anger, quick to help, he was the classic middle child – the peacemaker.  And then he got cancer.  And I saw in him a determination, a resilience, an anger and above all, a desire to live even when it meant pain.  Yes, his nemesis Pain was ever present throughout his struggle.  Suddenly, this notion of the gentle giant was no longer adequate to describe him.  I had trouble reconciling what I knew of the gentle Josh with the fighting Josh. 

I got a chance to ask him about this.  Less than two months ago, I was staying with him down at a motel near MD Anderson so he could undergo daily radiation treatments.  The radiation treatments took all of 20 minutes so we had plenty of time to fill the day.  And so I asked him what got him up out of bed every day?  What kept him going throughout all this?  At first he was perplexed by the question.  “Many people give up,” I told him.  “It happens.”  But he couldn’t wrap his brain around the notion of people wanting to die.  It was a foreign concept to him.  Ever the pestering little brother, I pushed him further on his answer.  He became angry.  Tears started flowing down his face.  And through those tears he told me the REAL reason.  “Wanting to live” was only half the answer.  WHAT he wanted to live for was the half that was unanswered.  With his jaw clenched and his voice trembling with anger and sadness, he said to me, “I DON’T WANT TO LEAVE ANNA….I MISS HER…..I WANT TO WATCH ETHAN AND KATE GROW UP…..I WANT TO WATCH THEM PLAY SPORTS, GRADUATE HIGH SCHOOL, GO TO COLLEGE, GET MARRIED……  There’s so much of their life I’m going to miss.”  The last statement he said in almost a whisper that hung in the air.

Ethan and Katelyn, you may have wondered why your dad was absent so much.  It often seemed like he was always making trips down to MD Anderson.  It probably didn’t seem fair.  And it wasn’t fair.  I saw the toll it took on the family by him being away.  Cancer is anything but fair.  But know this, he fought to the end, and I mean the very bitter end for one simple reason.  He loved y’all with all his being and couldn’t bear the thought of leaving y’all.  And so who was Josh?  Look to the love of his family and his undeniably painful and moving struggle to stay alive for them.  He loved Anna, he loved Ethan, and he loved Katelyn with all of his heart, all of his mind, and all of his soul.  THAT is who my brother was.

And now, I’d like to finish up with a simple poem written by a Roman poet.  It seems the nature of a brother’s grief hasn’t changed much in over 2,000 years.

Through many countries and over many seas

I have come, Brother, to these melancholy rites,

to show this final honour to the dead,

and speak (to what purpose?) to your silent ashes,

since now fate takes you, even you, from me.

Oh, Brother, ripped away from me so cruelly,

now at least take these last offerings, blessed

by the tradition of our parents, gifts to the dead.

Accept by custom, what a brother's tears drown,

and for eternity, Brother, ave atque vale

'Hail and Farewll.'



     "Y'all need to stop giving me new material to write about," I tell my dad.  The clock reads nearly 11 pm at an IHOP about an hour south of Dallas.  We're on the road out of necessity and he needs to give himself his IV antibiotic so I turn the hanging light into a makeshift IV pole.  The staff are understanding and even helpful.  The day of my brother's memorial service, my dad's arm developed a red swelling along one of his veins.  He showed it first to me about 1 pm at the reception.  Not good.  The odd thing was the swelling was not located where the IV line went in.  It was downstream.  You start running through the differential diagnosis of what it could be.  Most likely it was something relatively benign but included in the list of the differential diagnosis were some potentially serious stuff - bacteremia, lymphatic involvement, cellulitis, necrotizing fascitis, etc.  By that evening, it had grown substantially and we made the call that it was time to leave Dallas and begin the 5+ hour journey down to MD Anderson's ER, again.  Again.  Again.  Again.  It never ends, except when it ends as it did for my brother.  The price of cancer is eternal vigilence.  It's easy to feel trapped sometimes. 
     The day my brother died, we ended up in the ER for an infection in my dad.  The day of his memorial, we are there again.  By 3 am, we are once again drawn into the inescapable gravitational pull of MDACC.  The doc comes in, examines it and is puzzled by the fact that the swelling is discordant from the IV site.  She says to my dad, "most likely, it's nothing terribly serious, probably superficial thrombophlebitis from the Zosyn.  It's known to cause that in some people.  But given your disease we need to be sure.  I'm going to order an ultrasound but just to be on the safe side, we'll continue the IV antibiotics until we have the ultrasound results."
     The ultrasound confirms it.  Present in the vein is a clot that clogs everything up.  Inflammation and swelling follow and my dad is left with a painful but usually relatively benign condition.  He is discharged by lunchtime and in good shape.  That is until he calls me at midnight later that day.  Out with a buddy at a bar, it's the first time I'm having fun since I can't remember when.  I switch to doctor mode instantly, though.  His temperature is starting to creep up to that dangerous cliff of 100.4 degrees.  So far, the closest he got to the edge was 99.8 but that's scary enough.  Fortunately, a fever never materializes.  By noon the next day, he's over at my house and showing me his arm.  His forearm is starting to look like Popeye except red.  I wonder if we're starting to approach one of those rare but deadly serious complications of superficial thrombophlebitis (STP) or did they miss a deep vein thrombophlebitis on top of the STP.  Piecing together my anatomy, I somewhat arbitrarily decide that if the swelling swallows and passes the elbow, it's time to head to the ER post haste.  The forearm has compartments enclosed by strong sheaths.  If the process breaks out of that sheath, that's an uh-oh situation.  I'm not sure what I base that conclusion on.  It sounds right, though.
     My wife has accused me of enjoying these moments in a twisted fashion. Harsh, but partially true if I'm honest with myself.   It's not that I enjoy them.  At these junctions, my life and its purporse seems to resolve into a clarity that I can't quite explain.  I feel a deep fear which goes straight to my bones at having to make decisions that affect those I love.  But, somewhat arrogantly yet true nonetheless, I deep down know that the calls I make are right and there's ironic meaning knowing that someone can benefit from that arrogant self-assertion.  I've told my dad on many occassions, this one no exception, "I love it when the doctor says exactly the same thing I tell him beforehand.  Either we're both idiots or I actually know what I'm doing."  So that fear of being wrong and the heady power of being right lie in opposing juxtaposition.  At these points, I feel more alive and connected to life even when surrounded with the forces of death.  And yet I utterly despise and revile the situations that necessitate me being me.  What a strange manner of a career.
     I make the call.  Instead of heading back down to the ER, we're going to use compression, increase the frequency of heat and elevation and add an NSAID accepting the short term risk of masking a fever.  We'll see how it progresses.  At this point, I don't know if I'm right so all that sits there is the fear of being wrong, the absolution of being correct not yet borne out.  I hope I'm right.

rule of grief #4

#4 - Know when to be alone and when you need someone to lean on.  In all actuality, this is exceptionally difficult to master, at least for me.  As a back-up, have someone who knows how to tell the difference in you.

     This isn't a rule so much as a really good idea to have in place.  The other morning I woke up and my wife was still home.  "Why aren't you at work?" I asked groggily, a bit upset to have my morning solitude impinged upon.
     "You seemed like you needed me to stay home."
     "And what are you basing that upon?  I told you, I'm ok."
     "You were sleeping angrily."
     "Huh?  Sleeping angrily?" I had to laugh at that one.
     My wife based my mental status on the emotions of when I was sleeping.  Sure, why not?  She couldn't articulate it and she stood by her assessment.  I'm not sure I understand it but I've learned to trust her.  Judging information of the world around her by intituition and emotional radar, my wife balances out my cold rationality.  We ended up talking the entire morning until the early afternoon before she accompanied me down to MDACC to visit my dad when he was in the hospital (he's doing well by the way).  It turns out she couldn't have been more right.  I did need her to talk to.