grief work

     I've often heard the phrase 'working through emotions'.  It's such a bizarre concept to me.  How does one work at feeling emotions?  But stuck in apathy and lethargy, bordering on the edge of a very dark place, I knew I had to try something different.  Going back to the normal routine of life wouldn't work.  There would be no 'throwing myself into my work.'  Besides, I have no school, no visits to MD Anderson, no nothing.  And I'm not about to find the motivation to engage the mundane aspects of life like going to the grocery or cleaning (shudder).  I needed to give some physical embodiement to my emotion.  But not just anything.  It had to have some meaning and symbol behind it.  Some sweat and tears along with just a little bit of blood would probably aid the process.
     Some of my wife's coworkers graciously offered to buy us a plant to remember my brother.  Yeah, that sounds right.  Good idea.  We both loved our gardens.  We were as different as night and day but that is one thing I, along with my dad, helped to get my brother hooked on.  If it's going to be in memory of him, it better be a plant that lasts.  That meant a tree.  My soil is awful and compacted.  It better be an indestructible tree.  I've got it.  In the front yard of my brother and sister-in-law's house (I don't know if I'll ever be able to call it just her house) is a beautiful crape myrtle called 'Natchez'.  White fragrant flowers with a cinammon colored trunk, it's a bullet-proof tree and an icon of the south. 
     It took visits to 4 different nurseries but I finally found a good specimen.  That's ok, because I wasn't in a hurry.  I had all day.  Besides, I was working on grief as much as planting a tree.  It doesn't look like much now but soon it will grow into a beautiful tree (you can see the bark of some down at MDACC here).  My garden was in a complete state of disarray since A) we've been in a severe drought and B) I've hardly been around to tend to it.  So I sweated plenty in the Houston sun, cried when I moved the crape that was originally there that had a memory associated with my dad (another long story) and replaced it with the one for my brother, and bled when I pruned some nearby roses.  Grief work, I get it now.

a measure of life

There existed an ongoing debate.  On one side, there was my brother who thought himself average.  Not bad, not great, just average.  He was comparing himself to people like Bill Gates or Steve Jobs who would be in that class of greatness.  He subscribed to my dad's joking assessment of "I shot for mediocrity and hit it."  On the other side was my sister-in-law.  She thought her husband above average and that everyone has some talents or abilities to put to use.  I myself found it a strange and interesting debate to watch, coming down on neither side.  Always a contrarian, at the time I found that the question of competence and self-worth didn't work very well for me but I could not quite put it into words.  That is until now (but they're not my words, they are somebody else's).  I was pondering the death of my brother and the ripples it sent out and came across this chapter from Steinbeck.  I could not have encountered this passage at a more ripe and appropriate time in my life.

     A child may ask, 'What is the world's story about?' And a grown man or woman may wonder, 'What way will the world go? How does it end and, while we're at it, what's the story about?'
     I believe that there is one story in the world, and only one, that has frightened and inspired us, so that we live in a Pearl White serial of continuing thought and wonder. Humans are caught in their lives, in their thoughts, in their hungers and ambitions, in their avarice and cruelty, and in their kindness and generosity too -- in a net of good and evil. I think this is the only story we have and that it occurs on all levels of feeling and intelligence. Virtue and vice were warp and woof of our first consciousness, and they will be the fabric of our last, and this despite changes we might impose on field and river and mountain, on economy and manners. There is no other story. A man, after he has brushed off the dust and chips of his life, will have left only the hard, clean questions: Was it good or was it evil? Have I done well -- or ill?
     Herodotus, in the Persian War, tells a story of how Croesus, the richest and most favoured King of his time, asked Solon the Athenian, a leading question. He would not have asked it if he had he not been worried about the answer. 'Who,' he asked, 'is the luckiest person in the world?' He must have been eaten with doubt, and hungry for reassurance. Solon told him of three lucky people in old times. And Croesus more than likely did not listen; so anxious was he about himself. And when Solon did not mention him, Croesus was forced to say, 'Do you consider me lucky?' Solon did not hesitate in his answer. 'How can I tell?' he said. 'You aren't dead yet.' And this answer must have haunted Croesus dismally as his luck disappeared, and his wealth and his kingdom. And as he was being burned on a tall fire, he may have thought of it and perhaps wished he had not asked or not been answered.
     And in our time, when a man dies -- if he has had wealth and influence, power and all the vestments that arouse envy, and after the living take stock of the dead man's property and his eminence and works and monuments -- the question is still there: Was his life good or was it evil? -- which is another way of putting Croesus's question. Envies are gone, and the measuring stick is: Was he loved or was he hated? Is his death felt as a loss or does a kind of joy come of it?
     I remember clearly the deaths of three men. One was the richest man of the century, who, having clawed his way to wealth through the souls and bodies of men, spent many years trying to buy back the love he had forfeited and by that process performed great service to the world and, perhaps, had much more than balanced the evils of his rise. I was on a ship when he died. The news was posted on the bulletin board, and nearly everyone received the news with pleasure. Several said 'Thank God that son of a bitch is dead.'
     Then there was a man, smart as Satan, who, lacking some perception of human dignity and knowing all too well every aspect of human weakness and wickedness, used his special knowledge to warp men, to buy men, to bribe and threaten and seduce until he found himself in a position of great power. He clothed his motives in the names of virtue, and I wondered if he ever knew that no gift will ever buy back a man's love when you have removed his self-love. A bribed man can only hate his briber. When this man died, the nation rang with praise, and just beneath, with gladness that he was dead.
     There was a third man, who perhaps made many errors in performance, but whose effective life was devoted to making men brave and dignified and good in a time when they were poor and frightened and when there were ugly forces loose in the world to ultilize their fears. This man was hated by the few. When he did, the people burst into tears in the streets and their minds wailed, 'What can we do now? How can we go on without him?'
     In uncertainty I am certain that underneath their topmost layers of frailty men want to be good and want to be loved. Indeed, most of their vices are attempted shortcuts to love. When a man comes to die, no matter what his talents and influence and genius, if he dies unloved, his life must be a failure to him, and his dying a cold horror. It seems to me that if you or I must choose between two courses of thought or action we should remember our dying so to live that our death brings no pleasure to the world.

Average, below average, above average.  They don't matter to me.  I like Steinbeck's question better.  And I certainly know the answer as it pertains to my brother.

nothing & something

I knew this point would come but knowledge of the coming struggle doesn't make it any easier.  It's all the harder for knowing it but still being powerless to effect it.  No caring for my brother.  No lectures to run through.  No brother at all, not even to forward email jokes to.  No exams to prepare for.  No medical or cancer questions to answer.  Nothing.  Nothing but the everyday routines of life.  It's hard to give a damn about those right now.  Even under the best of circumstances, I don't do well with the day in and day out aspects of life.  Add crushing defeat and I become my own worst enemy.  I turn a lot to literature to keep those demons at bay.  In this passage from East of Eden, an older gentleman named Samuel whom reminds me greatly of my dad is speaking with a friend, Adam, who has just suffered a tragedy and is now left with two newborn twins.

     Samuel sat down quietly, and he didn't trouble Adam by looking him too much, and he didn't trouble him by not looking at him.  The wind freshened in the treetops and a fringe of it ruffled Samuel's hair.  "I thought I'd better get back to the wells," Samuel said softly
     Adam's voice had gone rusty from lack of use.  "No," he said, "I don't want any wells.  I'll pay for the work you did."
     Samuel leaned over the basket and put his finger against the small palm of one of the twins and the fingers closed and held on.  "I guess the last bad habit a man will give up is advising."
     "I don't want advice."
     "Nobody does.  It's a giver's present.  Go through the motions, Adam."
     "What motions?"
     "Act out being alive, like a play.  And after a while, a long while, it will be true."
     "Why should I?" Adam asked.
     Samuel was looking at the twins.  "You're going to pass something down no matter what you do or if you do nothing.  Even if you let yourself go fallow, the weeds will grow and the brambles.  Something will grow."
     Adam did not answer, and Samuel stood up.  "I'll be back," he said.  "I'll be back again and again.  Go through the motions, Adam."

That's what I'm doing.  I'm going through the motions.  Hell, I'm not even doing that.  The past few days, I have set ridiculously low daily goals to accomplish like 'do a load of laundry and actually put it away' or 'mow the yard.'  It's all I can do to reach even those low marks.  I'm trusting in Samuel's words that 'something will grow' and that by engaging the grief as well as the day, I can have some impact on what grows.  It should be true, at least it was once before.  My dad gave me similar advice at an earlier point in my life when I felt stuck and couldn't go on.  Something will grow.

request

At my brother's memorial service, there will be a point in the service for anyone to share your favorite memory of my brother or what impact he may have had your life.  We feel this will be important for the family to hear, especially his son and daughter.  In the interest of fairness, though, if you should decide to share, please keep it brief.

Less than an hour after my brother passed away, the family still held close around him full of tears.  I saw my sister-in-law trying to console her son and daughter.  But there were two of them, and now only one parent.  There simply was not enough of her to wrap them both close.  Now I am horrible at hugs.  Ask anyone that knows me, especially my Canadian cousins.  But even I knew that it was time to step up to the plate.  And in my mind, I thought of all the times I saw my niece cuddled up in my brother's arms.  During our annual trip to the beach, one would often find her asleep in her daddy's lap.  So I whisked her up and set her down in my lap with my arms around her.  It felt awkward and miserable and my heart broke even more, if that is even possible.  Like I said, I'm horrible at hugs.  But I held her tight.

Just the other day, I was scrolling through old pictures and came across this one that my mom took.  My first thought was, 'does he have cancer here?'  Yes, of course he does.  He has the bald head.  The date is my birthday of last year.  How's that for twisted irony.  He would have already started chemotherapy by now.  Judging by how good he looks, this is during our hopeful phase.

translation

With my dad in the hospital, I tried to help out by communicating a couple of things to his workers.  The head one is from El Salvador and while he does speak some english, it can get difficult to convey some things over the phone.  So I met up with him and tried best I could in my pidgin spanish.  As I was about to drive away, he came up and leaned in my window.

"Tu brother?"

"Muerto," I confirmed his suspicion.  It's emotionally difficult to say even in another language, perhaps because I wasn't expecting to have to deal with any grief at this point in time.  Just a simple task to fulfill.

He drew in a sharp breath between his teeth and shook his head signifying displeasure.  "Tu father, muy poquito..." and made the motion with his hand like a mouth talking.  Basically, he was saying he didn't talk much anymore.  That was a big deal.  A year ago, he'd say of my father, "mucho widdy-widdy."  It's a phrase that basically means chatty, or even too chatty.  That's who my dad was.  He'd constantly be talking to the customers or the workers about their lives or his.

Cancer sucks.

rules of grief

Today marks the transition from caring for my brother to mourning his loss.  As I drove home from his house yesterday, - (and yes, I still think of him in the present tense as in 'his house', and at what point, if ever, does it become just my sister in law's house?) - I gave myself three rules to follow.  And that's strange because I hate rules and have never been one to follow them very well.  Whether there is any value or truth to be derived from them for myself (or anyone else since I gave no thought to whether they would work for others), well I'll have to wait and see.

1. Grief is a process, not a goal.  When I fell in love with my wife, it wasn't a goal.  Sure, you try to woo and pursue your beloved's affection but ultimately, the act of falling in love is something experiential.  And you don't stop falling in love after the 'goal' of marriage is passed.  The relationship changes, evolves, ebbs & flows.  There is no end, only the experience.  I strongly suspect that losing someone you love is the same, only in the opposite direction.  There is no getting over the loss of my brother.  The loss will always be there.  The challenge is learn how to hold his presence, my memories of him, his very essence within me and still carry on in my own life without being destroyed by the loss.
2. You can't tell yourself how to feel.  I find myself feeling emotions faster than I can even register them.  On the way driving home, the clouds broke and the sun came out as I neared Houston.  I rolled down the windows to feel the warm, humid gulf coast air.  It simply felt good.  In less than a second, I felt guilty for enjoying that moment.  My brother is dead.  How dare I feel pleasure at the sensation of the warm air?  He can't so why should I?  Immediately following that emotion was one saying, 'yeah, but what would your brother want for you?'  That leads me to the last rule.
3. Allow for contradictions and mutually exclusive experiences.  To answer that last question above, I think my brother would absolutely want me to mourn him fully.  He'd also want me to live my life as I best know how.  So I allowed for the contradiction of the pleasure of a warm breeze juxtaposed with the guilt associated with that feeling.  One didn't have to win out over the other.  It doesn't have to make sense at this point.  It just is.

funeral

Due to my dad's hospitalization, the funeral will take place on June 2nd at 11:00 am in First Presbyterian Church of Allen.  The address can be found on their website. 

In lieu of flowers, please make a donation to the American Cancer Society in honor and memory of my brother.  Click here and it will tell you how to make a secure donation online or over the phone.  You can have a card with a personal message sent to the family by filling in the addresses (listed below).

(my brother's family)
The Van Sligtenhorst Family
431 Lakefield Drive
Plano, Tx
75094

(our parents' family)
Abe & Lynne Van Sligtenhorst
22735 Lain Road
Spring, Tx
77379

(my family)
The Van Sligtenhorst Family
5022 Mossy Bridge Dr.
Spring, Tx
77379

no rest

After the death of my brother, I wanted nothing more than to go home, sleep, see my own family, and then grieve.  I left Dallas Sunday morning.  Exhausted, I had to pull the car over once and sleep about half an hour in a parking lot before continuing on.  Once I got home, I spent some much needed time with my wife and son.  By 4:30 in the afternoon, I was ready for bed.  I downed two benadryl with a glass of wine, climbed into my bed and visited Mr. Sandman.  I wake up disoriented and on the couch.  The cause of my arousal from slumber was because a cat was on top of me.  I have no idea why I'm out on the couch and I'm not even sure what day it is.  I guess I was sleep walking again.  The next thing I know is that I'm on the phone with my wife.  Much like arriving on the couch, I don't even remember running to answer my cell phone.  My first sense of consciousness was hearing these words from my wife, "your dad has a fever."  She said it very slowly and loudly, speaking as if to someone who had cognitive difficulties.  I am jolted awake now.  "I'm on my way."

And on the way over to my parent's house, I automatically reach for the phone to call my brother to let him know that I'm taking dad to the emergency room.  A split second later the realization hits me that he's not there to answer the phone anymore.  Ah, shit.  I can't break down crying now.  I need my wits about me.  I'll be damned if this week will hold two funerals.  So I call my mom and request a source of caffeine waiting with my dad.  Into the car he goes along with my mom and we're flying down to MD Anderson's ER.

I'm in the left lane flashing my lights at every car in my way.  Most get out of the way.  Then I realize that the next vehicle in front is a cop truck.  He flashes his sirens as if to signal me to slow down.  I pull up next to him and start mouthing "H-O-S-P-I-T-A-L."  He doesn't understand me but he knows something is wrong.  He then changes lane to get over to the passenger side of my car.  My mom and dad roll down the windows and yell it again.  Even though this is happening at 90 mph, he's close enough to them and finally, he recognizes.  "Which one?" we read his lips.  My mom signs M-D-A-C-C with her fingers.  He nods in understanding.  His diesel truck roars to life, gets in front of me, turns on his lights and begins to clear traffic out of the way for us.  Only in Texas.  God, I love this state.

We get to the emergency room.  Like last time, by the time we get to there, he is not presenting with a fever.  It doesn't matter in his cases like his.  He had a fever at home and he's a leukemia patient recently out of chemo.  Unlike last time, though, he's stable with respect to blood pressure and heart rate.  No sign of impending septic shock this time around.  The critical test results are the white blood cell counts, especially his neutrophils.  By midnight, we have the results and his white counts are definitely low but his neutrophils are right on the edge of normal.  It wouldn't take much of a drop for him to become neutropenic.  IV antibiotics and fluids finish up around 1 am and the doc comes back around 2 am.  My dad is right on the cusp and the doc is not sure what he wants to do.  Technically, he could discharge my dad.  He no longer has a fever and by definition, is not neutropenic.  But good docs don't use just numbers. 

Given the current situation, he asks my dad, "what do you want to do?"  My dad turns and asks me.  I love the doc's response, "I'm not asking him.  I'm asking you."  We start talking through the process and it's clear that if he admits my dad now, the hospital stay has a higher probability of being shorter since he's very early on in the infection.  That would increase the likelihood of my dad being able to attend his son's funeral.  If he discharges him now with oral antibiotics, it's possible (in my mind I would say almost definite) that my dad's counts would start to plummet.  With a limited number of infection fighting neutrophils, a secondary infection could set in and then we'd be in real trouble.  Not only would he miss his son's funeral, he'd be at risk of his own funeral.  With septic shock, it's not usualy the first infection that kills the patient.  It's often the second much harder to treat one that does them in.  The doc makes the decision.  "I'm admitting him."  I tell him that I agree and he kinda smirks and says, "good."  He could care less if I agree.  He's making the right decision about what's best for the patient, period.  I like that even more.  So instead of my parents being able to grieve properly together just 24 hours the death of their son, my dad is in the hospital.

Cancer sucks.

anguish

Exhaustion and frustration turn to anguish and grief.  A few moments before the 2:00 am dosing, the demeanor of my brother changes.  His respiration, though the same in rate, changes in pattern.  The all too familiar twitches of his legs and arms cease.  His face no longer looks so strained.  I forgo the dose and instead opt to begin waking the adults.  Sleepily, the wife, the mom and dad, and me surround my brother.  His wife is on his left and his mom on the right.  His dad is at the foot of the hospital bed and I'm near him.  Our parents remember the details of his birth while his wife tells of their first date, but mostly it's a heavy silence.  Periodically, I measure the respiration rate.  True to form, he keeps on fighting and going.  About an hour passes and slowly, his breathing rate drops to 20....18....16....14....12.....down to 8 breaths per minute.  It's time.  His wife wakes and brings the kids in.  Seeing his kids present begins to unleash the tears in everyone.  Kleenex boxes are rapidly being emptied.  And at 3:30 am, my brother draws his last breath.  Now the gut wrenching grief and wailing truly begin.  My nephew and niece's dad, my sister-in-law's husband, my parents' son, and my brother is dead.

In deference to the acute grief, we request that you please wait a few days before inundating my sister-in-law with your condolences.  I will post the information for the funeral arrangements as soon as they are finalized.

pain

The pain spike again hit without warning but with great persistence and stubbornness.  It's as if we make an agreement with Pain.  Pain decides to honor that agreement but then it just capriciously changes the rules and neglects to tell us.  It's a one sided negotiation and then it's up to us to meet Pain's renegotiated terms.  It took some off-the-reservation methods but we have it back under control.  He is resting as peaceful as possible given the circumstances.  First shift is mine.  The dosing schedule that works, at least right now is every thirty minutes like clockwork.  Hopefully, it's a slow night.  I got some good reading done, Steinbeck's East of Eden, but now my eyes are too tired.  So thirty minutes is just enough time to throw out an update, listen to some jazz, or watch a tv show on netflix.  That netflix is courtesy of my brother.  He and his wife got us a subscription for Christmas.  He knew how much I liked unwinding after studying by watching various irreverant and vulgar tv shows.  It's striking how it's all those little things that spark the memories.  It's a cliche but it's true.  It's those little things that made him who he was that I'll greatly miss.  I already do.  But now it's time to dose again.  Pain's terms will be honored.

love

In the last week or so, I've changed my brother's dressing covering the bed sore on his tail bone, I've made on the fly choices about pain management at 3 in the morning with no attending to consult, changed out fentanyl patches, and I've administered countless doses of medications to my brother all with little sleep.  But when I found myself this evening administering the morphine suppository rectally, now that's brotherly love.

phone

During one of our clinical lectures, the physician gave us some advice.  "See this?  This is my external brain," he said pointing to his iphone.  "Don't waste your time memorizing every single drug and dose.  You can always look that up.  Besides, that information can change.  I'm more concerned with your thought processes that bring you to the correct diagnosis."

My thoughts exactly.  To that end, I had started thinking about getting an iphone, much to my son's jealousy.  About a month ago, I was spending a few days with my brother down at the hotel near MD Anderson.  His radiation to the base of the skull was a Monday through Friday affair that took place over 2 weeks.  The actual radiation took all of 20 minutes so we had plenty of time together in the hotel.  He loves his iphone and it was never far from him.  While he was checking his email on it, out of the blue he said to me, "if you wait long enough, you can have my iphone."  He always did have to buy the best technology, even when we were kids.  We were always so different in temperment and personality.

"Hey, let's not go there just now," was my reply.  We had just recovered from a conversation about death and the fears about what lies ahead.  I felt I needed some space to allow those thoughts settle.

"Why?  It's going to happen.  Besides, it's better than the one you were looking at anyways."  It was clear he was in a dark place.  How could he not be.  Even the room was dark with all the curtains drawn.  He was sensitive to any bright light.  It hurt.  He half-joked, "I've become Gollum lately.  I hate the sun."
The past few days, my cell phone's battery had been used all up and I had forgot my charger at home.  It seems I was constantly calling hospice communicating what we needed day and night - more morphine, a replacement for the limping oxygen pump, more morphine, backup oxygen tanks in case the pump failed, a nurse visit, more fentanyl patches, more morphine.  I used his phone and at some point, the cold irony came back to me.  It really is happening.  You gird yourself mentally, physically, emotionally for what lies ahead, but when it hits, you realize there are serious limitations to your preparations.  And while all those components are taxed enormously, it's your soul that gets bruised, broken and wounded the most.  Perhaps naivete isn't a bad thing.  If you knew what was coming, it'd probably be a hell of a lot harder to stand and face.

exhaustion

It's damned hard work dying, both for the one who's dying as well as the living standing by and aiding the process.  We're having to dose him every hour on the hour, sometimes more frequently (4 times in the 4 am hour).  Yes, there is a critical care nurse here but to put it delicately, I have far more working knowledge of what needs to be done at this point.  And by training, the ones here 24/7 are LVNs, not RNs like the ones who come in periodically.  They'd be fine for a run-of-the-mill case but they're just not well equipped to handle an exceptionally difficult case like my brother.  As a consequence I've gotten about two, two and a half hours sleep tonight.  I'm not saying that out of self-pity because I'm certainly not the only one lacking sleep here.  And nothing compares to what my brother is experiencing.  I'm just trying to convey the facts of why it's such a difficult situation.  Everything possible is being done and we've made use of every resource at our disposal.  The RN who was assigned to this case mentioned today that he's never had such a difficult case with trying to control the pain.  But we have the pain under control and that is what's important.  Sadly, he hasn't had any real consciousness since that experience with his son earlier today, or yesterday, or hell what ever day it was.  I have no idea anymore.  Day pushes up night and night covers day.  It's all a blur to me which is why I write.  I want to have some recollection of this time down the road and I don't trust my memory to be accurate anymore.

the enemy within

The past 12 hours, my brother has had my sister-in-law, my mom and myself in a surreal laughter mixed with tears on two separate occassions.  That may sound bizarre and twisted.  And it is.  I fully acknowledge the warped nature of laughing in the middle of this.  It'd be easy to chalk it up to lack of sleep but that's not it.  We're surrounded with the imminent death of our loved one and we're brought to laughter and tears in the midst of it.  I don't even know if there's a word or literary device for that in the english language.  If there is, I'd love to know it.  The first story, I can't tell right now.  I don't know if I'll ever be able to tell it here.  The second I can tell but the rawness of it makes it a hard yarn to spin.  But here it is.

At various points throughout the day, my brother will get an idea that he wants to go somewhere.  He'll lift his arms up and start to want to get out of the bed.  When we gently try to redirect his arms, he'll get frustrated with us.  He wants to get up and we're not listening.  Cancer?  What cancer?  It makes perfect sense to him in his mind.  I want to get up.  Get out of my way.  And one point, his wife leans over him and says, "you keep fighting so hard."

"Who is he?"  The three of us kind of look at each other puzzled hoping that one of us understood him.

"You.  You keep fighting," she replies.

"Who is he?"  Again, we look at each other.  "Who is he?"  I think he means it literally.  "Who is he?"  Who is my brother fighting?  Not who, but what.  Cancer.

"You.  You're still fighting the cancer," she says.

"If I knew who he was, I'd fight him............I'd keep fighting him......If I knew who he was.....I'd fight and fight him.  I'd keep fighting."

At that point, we all engage in some strange emotional reaction which is half laughter and half laden with tears.  Even now, he's looking for some physical embodiment to his foe that he could do battle with.  Emaciated, weak, drugged and he's looking for a fight.

3:15 pm

The past 60 hours, I think I've slept 5 hours one night, 3 hours the next, and then a 2 hour nap today.  My sister-in-law and mom probably have had less than that.  But all that work was worth it because FINALLY, we are ahead of the pain curve.  We've been in this spot before and know that it can change far too rapidly but it is still such a huge relief to attain that state.  With the critical care nurse on hand, we have more tools to deal with any rapid changes, too.  Aside from being able to take a nap, the greatest reward was this:

My nephew came in and said, "Hello Dad-o."  His dad replied through thick and tired lips, "hey buddy."  There was absolutely no doubt that he recognized his son.  My nephew's smile confirms that.

11:00 am

Long lag between posts but it's been a busy time and a lot's been happening.  The 6 am respite did not last long.  Early this morning, we had called in the critical care component of hospice and they sent a nurse out asap.  He basically came in and just upped what we were already doing with one addition.  Since my brother is no longer able to get the morphine ER pills swallowed, they went rectally with those.  Since 8 am, we've been constantly dosing him with increasing doses of sublingual morphine.  Add to that the rectal route and more fentanyl and the pain spikes have minimized.  He is still tremendously aware at times when the hellish discomfort sets in.  He lets us know immediately what he needs.  It's a bit of sign language, a bit of interpreting what he's saying, and a bit of intuition guessing what he wants.  So far, we've been able to stay one step ahead of the curve this morning.

The plan moving forward is that they are going to have a critical care nurse here 24/7.  At this point, it's unlikely they'd be able to get any IV access to him.  So we're left with the suppository route, the transdermal route and the sublingual route.  So far that seems to be working.  And my brother just keeps going somehow.  Just over a week ago, he told his wife that 'he was ready to go.'  I'm going to beg to differ on that one.  He still keeps fighting every breath of the way.

6:00 am

Blissfully, my brother slept from 2:15 until 5:15 am before the next pain spike.  Relief is setting in for this spike and he's slowly going back to sleep.  I'm not sure what he's running on.  Calorically, he's only ingested small volumes of orange juice, milk or pepsi in the last few days.  Somewhere in the 2 am hour, my mom noted that he's two months to the day and hour of his 40th birthday.  Even at this point, she still hopes for a miracle.

2:30 am

A few weeks ago, the pain spiked 1 to 2 times a day.  A day or two ago, it was 3 to 4.  Yesterday, it was every 4 hours.  After midnight, we've been dealing with pain until 2:30 am when he finally got relief that lasted longer than 5 minutes.  I loaded him up with morphine at doses that were doubled just like the hospice instructed.  Didn't touch it.  I did more.  Nothing.  My mom turns to me and says, "this isn't working, is it."  It wasn't really a question, more of a statement of fact.  I resorted to cutting up methadone lines like a coke head.  With the help of my mom, we got the white powder into a syringe and mixed it up with orange juice.  His wife joined in and we constantly tried to keep him calm and get his body into a position that worked while waiting for relief.  With each passing minute, I increasingly doubted that relief would come.  An hour, the longest hour imagineable, it finally came and he's now asleep.  The question is for how long.....

12:30 am

My mom is up with me.  She refuses to go to sleep.  In large part, she wants to soak up every last moment with her son, no matter how painful it is.  But there's another issue that is at play.  Sometime back, she had a dream.  In the dream, I was coming near her to tell her something.  A sense of horrible foreboading overcomes her as I approach and so she tells me 'no' emphatically.  She doesn't want to hear what I am going to tell her.  The 'no' becomes so strong that she arouses into the waking world shouting 'NO!'  It doesn't take a genius to figure out what I was going to tell her in the dream.  So now, she does not wish her dream to come true.  She doesn't want to go to sleep and have me wake her up to tell her that her son's journey through life is over.  So she sits in a chair with her eyes half open trying to stay awake.

11:30 pm

My brother's pain management comes in three forms.

1. Fentanyl patch - an opiate that can be absorbed across the skin.  It releases a steady stream of fentanyl 24 hours a day.  Each patch lasts three days.  We increased his dose by 25% in the last day.
2. Morphine extended release (ER) - a pill form of morphine that is slowly released in the GI system to get a somewhat steady level.  It's to be given every 8 hours so that an even amount is present 24 hours a day in the blood stream.
3. Morphine solution - a liquid form that is to be held under the tongue or against the cheek to be absorbed across the mucosal lining and directly into the blood stream.  When done this way, it bypasses the GI system and gets into the system quickly.  It's for breakthrough pain events.  Ideally, if options #1 and #2 are working well, the necessity of #3 is minimized.  We're not dealing with ideal circumstances anymore.

I just got off the phone with the hospice nurse.  My brother's pain started spiking horribly and uncontrollably today.  To make it worse, he no longer swallows pills.  We found two ER tablets from earlier in the day between his teeth which we had thought he had swallowed.  So we needed to see what options we had.  The first one is to load him up with the morphine solution every hour on the hour.  We're trying that one first but it necessitates the need for working in shifts when you're delivering a med every hour all night long.  I volunteered for the first shift so his wife could get some sleep.  She was up with him quite a bit last night.  So here I sit writing until the next dose in about half an hour.

the final leg of the journey

I finished my last final exam of the year.  Most students I'm sure had one of two things on their mind - catching up on lost sleep or going to a bar.  Both of those sounded wonderfully appealing.  For me, though, I allowed myself a few moments to gaze at a beautiful fountain that is at the back entrance to my school in order to signify the accomplishment.  I then proceeded to walk the half mile to MD Anderson.  Mixed emotions were present as I walked into the massive structure.  I had a date with my dad's third round of chemo but I felt a profound sense of loss that never again will I walk through those doors to be with my brother.  Ever.  We spent a LOT of time down there together and while it was a immensely difficult time, I have incredibly fond memories of those times spent together.  My brother and I grew closer than we ever had before through those long hours spent together.  I will treasure them always.

Today, though, I had to be there for my dad.  For better or worse, I'm learning how to compartmentalize myself.  Since he's had allergic reactions the past two times, we decided to cut to the chase and just give him those medicines designed to halt anaphylactic shock before he got the chemotherapy.  It worked as intended.  We were out of there just before 10:30 pm.  Much better than the 2:45 am last time.  While it was a medically uneventful 9 hours, the conversation was not.  Inevitably, it never strayed far from cancer or my brother.  It was decided that I'd head back up to Dallas first thing in the morning and my dad would drive himself to chemo the next day.  My brother has neither drank nor eaten anything substantial in the last 36 hours.  Conventional wisdom has it that once a patient stops drinking, there's less than 72 hours left.  It's time to down a couple of benadryl with a glass of wine or three to catch some zzz's before heading up.

finality

It was a very short trip which contrasted with the immensity of it.  My dad roused me from sleep Tuesday morning with a phone call.  My phone is never more than a few feet away from me day or night.  He wished to go see his son one last time.  My dad's chemo treatment is a three day affair which starts Wednesday and we both knew it was unlikely my brother would still be alive after that.  My dad wrestled with postponing his chemo a second time.  But he knew that is not what my brother would want.  My brother would want our dad to have every chance at life, the chance at success that so cruelly eluded him.  So if my dad wanted to see his son alive in this world, the time was now.  So we embarked upon that familiar route to Dallas.  I think I could drive it with my eyes closed by now.

We were there only seven hours before heading back down to Houston.  What can you do in seven hours?  You can see your brother no longer lucid and barely conscious.  You can struggle to get into him even a milliliter of morphine either under his tongue or against his cheek as his jaw remained clampled shut.  You can watch him writhe in pain as you help maneuver his frail body so that the nurse can change the bandage over his bed sore.  You can try to help get him to urinate when very little of his body is functioning.  You can see everything that is death's triumph over life.  You can say good-bye while holding his twitching, cold hand.  You can watch his eyes flitter open at your voice with the briefest of expectation that he might recognize you.  You can then see that naive expectation was in vain as the spark of recognition is no longer there.  And then you can watch your dad break down over the imminent death his son.

You can then get into the car and drive away with the setting sun struggling to figure out how to put one foot in front of the other.  I have my last final exam to take today.  I could care less about it.  I have honors in the class, at least until I bomb the final.  It seems such a small, stupid and insignificant sacrifice to make in order to watch my brother die.  Maybe it's my own form of penance.  I only take it because I'm going through the motions.  That and it conveniently happens to fall on the day my dad has chemotherapy.  I get home shortly before midnight.  I say hello to my son.  He's a night owl like his mom.  At least like she used to be because she's fast asleep.  I quietly creep into our room and lean over to place a gentle kiss on her cheek.  A slow smile graces her face.  So how do I keep going?  It's moment to moment and each one is an eternal struggle.  But seeing my son, seeing my wife smile in her sleep, hell, even seeing my dog's wagging tail all allow that particular moment to exist and then pass into the next.  And I do care about getting my dad to chemo so that's what gets me out of bed, at least for today.  But what will I care enough about to get me out of bed the next day or the next month or the next year?  I just don't know....

dreamland

time is a gypsy caravan

steals away in the night

to leave you stranded in dreamland.

distance is a long range filter

memory a flickering light

left behind in the heartland

- dreamline by n. peart

Perhaps against my better judgement, I left my brother's home in Dallas this morning to drive down to the Houston med center to take a final exam in microbiology.  Five hours on the road and about two thirds of the way through the three hour exam, I started feeling dizzy and my eyes wouldn't focus quite right.  I was then struck with a very lucid and clear picture of what might happen if I were to just pass out right here and now?  What would the surrounding people do?  The irony of a large group of doctors-in-training taking a scantron test faced with a real life emergency was rich to me.  I was probably subconsciously acting out my brother's scenario with everyone around him.

The wooziness passed and my thoughts moved onto my brother.  My sense of disconnectedness was the briefest of moments.  His has lasted much, much, much longer.  Friday and most of Saturday were spent chasing the pain.  For the rest of my life that Saturday will forever be etched into my consciousness as well as my soul.  His daughter had a soccer tournament and the family was off to cheer her on.  Life goes on and all that.  My brother would wake up complaining of pain.  I'd drop the 40 mg of morphine solution under his tongue and count the 10 seconds before offering him the straw to the gatorade bottle to swallow the rest down.  He'd lose consciousness and then 20 minutes later he'd wake back up.  He asked me, "do we have any relief yet?"  I'd reassure him, "it's coming.  It's coming.  Stay with me.  It's coming."  We just couldn't get ahead of the pain.  In less than 8 hours, we'd given him over 500 mg of morphine.  Just a day or two prior, he only required about 400 mg over an entire 24 hour period.  Suddenly we're blowing past that in less than 8 hours.  And during those few days before which seem like eons ago, he experienced moments of lucidity and was able to carry on meaningful conversations.  A day or two later, though, and you're overwhelmed.  It's like a tsunami.  It strikes with no warning and you're in a strictly reactionary posture trying to play a desperate game of catch up.  It's terrifying to be the one calling those shots.  How much morphine constitutes an overdose?  How do I balance that with pain?  I constantly monitored his respiration rate and pulse to make sure he was safe from an overdose.  I'd be damned that if after all this, I'd be the one responsible for his passing due to an opiate overdose.

At one point I finally asked him, "what can I do?"  His voice trembled and his speech was slightly slurred but the meaning was absolutely clear.  "Make the pain stop."  I hear you loud and clear, my brother.  By Saturday evening, we finally accomplished that goal, nearly exhausting his liquid morphine in the process.  In the end, he required over twice his normal dose of opiates to get the pain controlled.  As a reward, though, his wife was able to gratefully spoon feed him two helpings of Blue Bell vanilla ice cream.  He was able to give his special handshake to his son before going to sleep.  And as a bonus, his grammy got to witness the cherished exchange between her son and grandson.  That was probably his last precious moment of lucidity.  Sunday he spent in dreamland, his memory a flickering light.  He'd briefly wake up and talk about various snippets from his subconscious.  To those of us in the waking world, it held no physical manifestation but in his mind it made sense.  My wife adamantly assures me of that.  He was preparing for a trip somewhere and we needed to get the suitcases.  "I need my wallet.....Are they at Breckenridge? (it's a nearby soccer park where his daughter plays soccer).....Are you ready?.......It's a hard trip.....................I'm halfway there.....It's a hard trip........."  During this exchange, I stood there holding his next dose of morphine.  His wife agreed with him about the difficulty of the trip and reassured him that we were ready.

I will know know my name as it's called again

Walking out to my car, I see my mom sitting on my brother's driveway.  I'm so scattered lately I'm lucky if I get more than five steps anywhere without forgetting what I'm walking towards.  I can tell that she's been crying.  She and my brother have an unspoken agreement - she'll do her crying where he won't see it.  I stop and clumsily sit down with her.  I don't really have any words to make the situation any different than it is but hope my presence is enough.  The conversation meanders over the barren landscape like a tumbleweed blowing in the wind.  Apropos of nothing and everything simultaneously, she mentions that I am on my brother's medical power of attorney along with his wife.  She was a witness on the form when my sister-in-law filled it out.  Speechless, tears started down my face.  I knew he signed a Do Not Resuscitate and a medical power of attorney but I had no idea I was on it.  It wasn't ever discussed.  I presume, perhaps with no measure nor confidence of accuracy, that my sister-in-law just figured I was a logical choice to add to it.  I ask her if it's true and she confirms it.  She did not want to be the only one it.  I am beyond touched.  Words escape me.  I may be called upon to decide what to do about my brother.  How to die?  What would he want?  Of course, I've gone over the various scenarios of how the final act of this play could end.  How could I not?  But to be there and be an actor on the stage is so different when it actually happens.

intrusions

"How about we change position a bit to minimize the soreness?" I asked of my brother.

"How about you leave me alone?" was the response.

Can't say I blame him.  He constantly has people asking him about his pain, if he's hungry, if he's thirsty, if he needs blah, blah, blah.  Granted, it's done out of love but do any of you really want your little brother asking about your bowels?  It's hard enough to have the various health care workers prodding and examining you.  It's quite another to have your close loved ones doing it.  There's not really much to be done about it either.  It's a give and take relationship that is constantly being renegotiated, often unexplicitly, but a necessary one nonetheless.

firsts

"Do you enjoy playing with all of his meds?" my sister-in-law queried of me today when I was digging through his numerous bottles of meds.

It's a fair question.  I do possess, as I think any good doctor should, a curiousity about the human body which naturally leads to curiousity about the disease states.  It's a solid morbid truth that for us to learn, someone else must suffer, and furthermore, we must get some satisfaction out of the process.  I've heard many an instructor state that they receive more from their patients than they dole out.  I'm beginning to become familiar with that experience.

When we were kids, my brother had some skin infection on his upper back.  I remember he'd give me a quarter to rub the topical cream on his back.  Over two decades later during a lecture in microbiology, a condition dubbed tinea versicolor flashed up on the screen.  It's caused by a fungus with the wonderful name of Malassezia furfur.  Under a microscope, the fungus looks like 'spaghetti and meatballs' and that's a pretty diagnostic clue.  As soon as they showed a picture of what a patient afflicted with it presents as, my mind flashed immediately back to my childhood.  I'm guessing that's what my bro had all those years ago.  If I close my eyes, I can picture his back quite clearly.  It seems even then he was my first real patient.  I was rubbing the goo on his back primarily out of a curiousity to see what was growing on him.  Flash forward to today and I'm freely playing around with his opiate doses.  Who would've thought our relationship would move from simple topical creams to heavy hitting narcotics.

So to answer my sister-in-law's question, I took a very long pause.  'Enjoy' is close and seems a natural first descriptor to pop into my mind but upon further evaluation it didn't seem to be the right word.  That seems too twisted to derive pleasure from my brother's condition.  'Meaning'...now there's a word that starts to get to the meat of the issue.  Add the word 'gratifying' and I think that gets real close.  Yes, I think I can say that I take away a great sense of gratification when I can provide even the smallest measure of aid to him.

father & son

(I posted this one earlier but for some reason it disappeared.  Here it is again.)

About 30 minutes before midnight, my nephew peaks his head into his dad's room.  He wants to say goodnight to his 'dad-o' but my brother is already sawing logs.  His mom tries to coax him in but he starts to back out.  Now at this moment, I could as a writer ascribe all sorts of emotions and thoughts to my nephew.  Some may be accurate, some not.  The only tools with which I have at my disposal are my imagination and my intuition, not an absolute record of hard facts.  So instead of me writing what I think, ask yourself, what would you feel if you were a 14-year old boy wanting to be close to your ailing dad?  The conflicting emotions of wanting to be close but the apprehension of how to do it.  Is your dad in pain?  Would his heart be lifted at seeing your concern?  Would it hurt to touch him?  Would he be angry if you were to wake him up?  Use your imagination.

As my nephew starts to shift away, I call his name using my deep quarterback voice.  He stops and comes back and I look him in the eye.  "How do you want to say goodnight to your dad?"

He shrugs his shoulders sheepishly.  His Grammy (my mom) demonstrates by gently touching her son's foot.

"Go in and grab your dad's hand."  He does and the moment he touches his dad, time stops.  All those questions I raised before exist simultaneously within the space of the smallish room.......My brother opens his eyes, recognizes his firstborn and only son, and gives him their special handshake.  My nephew then leans in for a hug and my brother receives him openly with a gentle but impassioned embrace.

husband & wife

'for better or for worse...'  I'd guess the average person who's taken those vows probably does not give much thought to what that can mean.  I know I didn't.  For my sister-in-law, in part it means forsaking the proverbial shared wedding bed.  She pulls a mattress out and slaps it on the floor, half in the room and half in the hallway to sleep next to the bed of my brother.  There she sleeps until awoken in the night by her husband who is experiencing a pain spike and needs some medication to alleviate it.

exams

I did the math to see what it takes on my remaining three final exams to pass.  I need somewhere in the neighborhood of a 23% to pass physiology, a zero to pass microbiology, and a zero to pass Intro to Clinical Medicine (I've already accumulated enough points to pass those classes).  My only other class, Clinical Applications, was all group work and doesn't have a final.  Not exactly a stellar finish but a finish nonetheless.

mother's day

In years past, we would celebrate Mother's Day by heading down to the coast with my brother's family and our parents.  It was a vacation that he and his wife started a long time ago.  It just sorta evolved into a family tradition.  First it was just his family.  Then my parents started going.  Then we joined in.  It became a ritual that my dad, my brother and I would run to the grocery store early Sunday morning to get bunches of roses for the mothers.  And then everything changed last year.  My brother was in the middle of chemotherapy and the holiday falls right before my finals.  But my brother wanted it to happen, period.  So he changed the date to one after my finals and it ended up being between his 4th and 5th rounds of chemotherapy.  He felt great and it was a great joy to see him riding a body board in the small surf and building sand castles in the sand with his kids.

This year, my mom simply requested of me, "can you take dad to chemo so I can be here with my son?"  My dad's chemo ended up not happening* so we spent a somber Mother's Day at my brother's house.  Determined to make something not necessarily cheerful but meaningful out of it, my dad still made the morning run to the grocery store for roses.  But instead of two sons, he took two grandsons.  And my nephew stood in his dad's place and picked out roses for his dad to give to his mom.


**My dad's white counts were too low to go through another bout of chemo.  That's not necessarily a bad or unusual thing and it provided the opportunity for my dad and I to spend more time with my brother.  He received a shot of Neulasta to boost his infection fighting neutrophils and is due back in the doc's office in 10 days.  In all probability, he'll start his third round of chemo then.

clock without hands

The main character, JT Malone, in Clock Without Hands has leukemia.  The way in which he discovers his lethal disease is eerily like my dad and my brother.  He was just living his life and one day notices he feels off.  Time passes and eventually he makes his way to the doctor to discover the advanced blood born cancer.  Through the denial and anger, he eventually begins to realize the truth of the diagnosis.  He's a pharmacist and he's sitting there in his pharmacy holding his pestle which has been used to make thousands upon thousands of remedies.

As he sat holding the pestle there was in him enough composure to wonder at those alien emotions that had veered so violently in his once mild heart. He was split between love and hatred – but what he loved and what he hated was unclear. For the first time he knew that death was near him. But the terror that choked him was not caused by the knowledge of his own death. The terror concerned some mysterious drama that was going on – although what the drama was about Malone did not know. The terror questioned what would happen in those months – how long? – that glared upon his numbered days. He was a man watching a clock without hands.

bibliotherapy (as my wife calls it)

I find much solace in the work of the masters of literature.  They knew and understood the human condition as few can.  The medical fields of psychology and psychiatry could learn much from them.  From the author who penned the title of my blog, Carson McCullers starts out the book Clock without Hands with this haunting one line.  As soon as I read it, I knew I had to finish the book.

Death is always the same, but each man dies in his own way. For J. T. Malone it began in such a simple ordinary way that for a time he confused the end of life with the beginning of a new season. The winter of his fortieth year was an unusually cold one for the Southern town — with icy, pastel days and radiant nights. The spring came violently in middle March in that year of 1953, and Malone was lazy and peaked during those days of early blossoms and windy skies. He was a pharmacist and, diagnosing spring fever, he prescribed for himself a liver and iron tonic. Although he tired easily, he kept to his usual routine: He walked to work and his pharmacy was one of the first businesses open on the main street and he closed the store at six. He had dinner at the restaurant downtown and supper at home with his family. But his appetite was finicky and he lost weight steadily. When he changed from his winter suit to a light spring suit, the trousers hung in folds on his tall, wasted frame. His temples were shrunken so that the veins pulsed visibly when he chewed or swallowed and his Adam’s apple struggled in his thin neck. But Malone saw no reason for alarm: His spring fever was unusually severe and he added to his tonic the old-fashioned course of sulphur and molasses — for when all was said and done the old remedies were the best. The thought must have solaced him for soon he felt a little better and started his annual spring garden. Then one day as he was compounding a prescription he swayed and fainted. He visited the doctor after this and there followed some tests at the City Hospital. Still he was not much worried; he had spring fever and the weakness of that complaint, and on a warm day he had fainted — a common, even natural thing. Malone had never considered his own death except in some twilight, unreckoned future, or in terms of life insurance. He was an ordinary, simple man and his own death was a phenomenon.

nocturne

There's a conventional wisdom among physicians about organ failure.  If a patient has one organ system failing, we can deal with that.  If it's the kidneys, we can dialyze them.  Heart failure, there are meds and devices we can implant.  If a patient has two organ systems begin to shut down, it starts to get dicey.  It starts to get like a dog chasing his tail - the faster he runs, the farther the tail gets away.  Once you hit the magic number of three systems failing, there is very little, if anything that can be done.

My brother is starting to enter into that phase of multiple organ system failure, or as hospice views it - the active process of dying.  He has begun to look a bit jaundiced which means the liver is beginning to shut down.  He is drinking very little water anymore and his urine is getting very dark.  That means the kidneys are no longer working quite the way they're supposed to.  As if that isn't enough, his lymphatic system and bone marrow are both affected greatly so his blood and immune system aren't working right.  As a consequence, he's starting to get open wounds as bed sores.  And the final sling and arrow of outrageous fortune is the fact that he does have two tumors present in the pulmonary system - one in the lower right lung and one on the right bronchus.  His breathing has increasingly become more rapid and the slightest acts leave him feeling like he ran miles at a sprint.  Those tumors are probably increasingly working their evil.  If you wish to see my brother, now is the time to do it.  There is no later.

I am rapidly reaching a limit as to what I can write about my brother.  The situations are getting harder and and more delicate so out of respect for him and his family, I've started to censor myself (a strange concept for anyone who knows me).  With that said, his pain is not well controlled at all.  The hospice group is going to try some different approaches to his pain management and when asked to comment, my reply was simply but truthfully, "it sounds very rational and reasonable to me."  The last thing I want is for my brother to suffer in pain.  I didn't do that for my dog or my wife's cat.  I sure as hell don't want it for my brother. 

To be honest, I'm not sure how he's even doing it.  The other day on my way to my exam, I just started having tears randomly stream down my face while careening down the freeway.  Nothing specific prompted it.  No bits of memory, no emotional song, nothing.  But down they came, regardless.  I composed myself as best I could, which is to say I looked like everyone else there (students with bags under their eyes and a haphazard look about them are not exactly unusual during exam time), took my exam which was a blur and I'll be damned if the tears didn't start flowing again while driving home.  And then I repeated the whole cycle two days later.  I don't know how he endures the pain 24/7.  I'm a basket case but that's probably right where I need to be.

donuts

I was just about to head out of the hotel near MD Anderson to make a run to the grocery store.  My brother needed some over the counter meds that he was running low on.

"Anything else you need?"

"........You know what sounds good........You know those little powdered donuts?  How about some of those?"

"Absolutely"

I knew them well and a smile filled inside me.  When we were much younger, we used to live in the Midwest.  Periodically, we would pile into the car and make a pilgrammage to visit my dad's side of the family in Canada.  One particular border crossing, my brother thought it'd be funny to put the powder from those little donuts underneath our noses and start sniffing a lot and twitching.  Needless to say, my dad didn't find the thought of explaining his miscreant kids to a border guard very appealing so he quickly had us surrender the donuts to him.

There's not much lately that brings joy to my heart so whenever I find them, I hold onto them all the tighter.  The next morning when I came out of the shower, I found him in bed with a ring of powdered donut sugar around his mouth having dived into the bag for breakfast.  I'll hold onto that image the rest of my life.

a father's lament

(these are the words of my father and he asked me to post this for him)

It has been a long road for all of us and for many of you who have followed along this path with us. Each time someone asks us about Josh and how he is doing I know you, as well as we, want so desparately to hear, "He's getting better!" We have no such news. Daily we see his condition slip as the cancer continues to spread and the pain increases and the medicines that help relieve the pain place an added burden of taking away his ability to stay lucid and coherent. Lynne will go back up again on Monday and with help of hospice care for him as only she can. We continue to appreciate your support and prayers and will keep you posted as often as we can. Love Lynne and Abe

study?

Study?  What tests?  My son had his conformation today, then a celebratory lunch with the family followed up by an incredibly difficult conversation with my sister-in-law.  My brother has begun to hallucinate and have some scary psychological disturbances.  I don't know how much time we have left with him now.  So it's now nearing 6 pm on the eve of my physiology exam and I've yet to review an ounce for this class.  If I make it through this gauntlet, it'll be a miracle.  If only my brother were so lucky to make it through....

hospice

Simply put, my brother is not doing well.  Clinically, the only tool necessary is one's two eyes.  He's six foot four inches and barely weighs 130 pounds fully clothed.  His wife has wisely made the necessary decision to solicit the help of Hospice care.  That probably means a lot of different things to different people since it's a pretty loaded term.  So what does it mean for my brother?

1. Immediately, there is no change to his medical care.  The oral chemotherapy (tarceva) is NOT denied to him. 
2. It does, however, reflect a change of heart from an attitude of fighting the disease to one more of acceptance.  The goal of hospice is neither to hasten nor delay death.  The goal is to provide as much comfort to the patient and their family as possible.  It also seeks to allow a natural order of the death process allowing for whatever dignity to remain present.  Tweaking the pain medications, making it easier to get medical supplies (supplemental oxygen, hospital beds, etc), and providing psycho-social support services to the family are their tools.
3. In order to solicit the services of hospice, a doctor must sign off on the order which states that under the normal progression of the disease, the patient has less than 6 months to live.  With that said, miracles do happen and people are allowed to move in and out of hospice's auspices, but medically, there is nothing left for my brother to slow this thing down.  The end is rapidly approaching.
4. Hospice is not a place.  It's an attitude and provision of palliative services.  It can occur in the home setting, the hospital or nursing home.  My brother is not required to enter into any institution if he does not wish to.  He's at home where he wishes to be.

On behalf of my family, I want to thank everyone for all the prayers and words of encouragement during this rough time.  I also want to encourage them to continue to reach out to support his wife and kids in whatever way possible.