Thursday, November 29, 2012

Day 100

Let Observation begin with the presumption that most people who will read this are pursuing success in one field or another.  This pursuit may be in a work environment or in a recreational pursuit, or even an academic field; but almost assuredly you are seeking success. And it may be surmised from this pursuit that you either equate the effort to accomplish or the actual success with your ongoing happiness. But how do you know when you are successful?

In the zero-sum world of near unadulterated capitalism there is typically only one winner for any given competition.  Let it be interjected here, in a tip of the hat, that there are new trends in business management; working models of sustainability look to change the goals of businesses from pure shareholder equity growth via limiting progress measured by profit line comparison to long term strength of relationships with customers, suppliers and the community in equal measures.  But most people who are reading this will have developed their sense of success on the old zero-sum, winner take all approach.

So let the Observation shift to a look at 5 people in the battle against cancer: The Patient, The Nurse, The Doctor, The Hospital, and The Pharmaceutical Company.  My personal experience with Insurance Companies leads me to believe that their role in the cancer puzzle is remarkably neutral, only when we realize we did not have enough coverage do we find ourselves calling for insurance company or health benefit reform.  This complaining comes because we often hold the extension of life more precious than the life that is lived to the fullest.  Once again a topic is touched upon that is worthy of its own separate discussion; so more on that later.

For this moment let’s look at our 5 people and see how they define success: The patient would appear to be the simplest but that view is almost always seen from any point of view but the patient’s.  Success is not just beating the disease, but beating it while remaining intact.  To keep one’s body whole along with maintaining vibrant healthy relationships with family, friends, and co-workers is no easy task on a day to day basis for those of us not fighting for our lives against an invisible foe.  To accomplish while fighting against millions of uncooperative over-replicating automatonic cells is virtually impossible. 

It is in attempts to compensate for this inadequacy the patient will seek either solitude, or to develop the acting skills of a Meryl Streep or Laurence Olivier.  For the cancer patient success is defined as actually beating the disease or presenting the façade of not letting the disease beat them?  If they do beat the disease, rarely are they left whole either having lost body parts, friends, family or all three.  If they manage to fool the world into believing that they are going to be okay with the ultimate sacrifice, the world showers them with pity and love until pass away, and the legacy of their fight is perhaps memorialized in obituary or on a headstone.

The Nurse is the most challenging person to try and define success.  Decision making is limited, so the consequences for patient outcome are minimized. But as the hands on part of care giving, the Nurse receives the most input from patients, family, Doctors and hospital.  Much of this is positive input even if demanding, but the few negative inputs coupled with the realities of caring for people who are in all likelihood going to die from their disease takes an immense personal toll.  Many oncology Nurses can only handle 3 years or so before the stresses make it impossible to continue giving the best care and they become jaded and in need of either counseling, medication or both.  The sure cure to this situation is of course to move onto another field, but some are so touched by the strength and courage of their patients that they commit their lives to this field. 

Success for the oncology Nurse may be as simple as being to go home each night and getting a good night sleep before getting up the next day, returning to work and greeting the new day with a smile.  Success can be defined as perseverance of a compassionate heart in light of all the tears and pressures to address all the administrative crap that comes with the job.

Success for the Hospital, a corporate person, is defined as keeping the doors open while seeking to gain the largest market share of patients.  To accomplish this goal it must balance a quantity of patients many of whom are un- or underinsured against maintain a quality that allows them to keep accreditation, recruit a working supply of adjunct staff and nurses, while keeping the Doctors as happy as possible.

Much of this is done on the financial backs of those patients who have adequate insurance coverage.  Adequate is a subjective term here, subjective to the Hospital’s perspective.  Over charging for procedures, services and supplies is moderated by Insurance company standards of ‘Reasonable and Customary’ charges.  Such modifications by Insurance companies still compensate typically in excess of 200% of actual costs, indicating that a 200% profit on all insured patients should offset the unrecovered costs of the un- or underinsured.  Consider the most expensive and expert building contractors only charge 20% for overhead and profit. 

The costs absorbed by caring for the un- or underinsured should be covered; and yet the pursuit of the co-pays, deductible and co-insurance of the insured is a tenacious job worthy of the meanest pit bull.  To all the pit bull owners of the world, I am sorry for the comparison, your dogs are worthy of much better company. It is these incidental fees that often cripple the financial health of the patient.  In Evan’s case, the main hospital billed over $475,000 to our insurance company, the insurance company paid almost $300,000 of these fees, and we were left to pay over $28,000 in other fees.  Had we not had insurance, the expenses would have been written off or upon legal pursuit, been wiped out in a bankruptcy proceeding.  All this after the Hospital had already received a king’s ransom.

If this were any other business, a poor outcome would have resulted in non-payment, price adjustment or refund, but Hospitals success is like that of a professional baseball player.  If they get it right 3 out of 10 times they are considered good, 4 out of 10 they are elite.

As complex as the success for a Hospital might be, success for the Pharmaceutical Company is a lot simpler proposition.  Make enough money by selling those items that no one else can produce while keeping the R&D moving forward and keeping regulators at a safe distance.  For the last 18 months of treatment at our local hospital Evan received an injectable medicine called Temsiorlimus it was listed at $5,000 on the hospital bill, was being administered ‘off label’, given once per week and required Outpatient Clinic Administration. 

Temsirolimus is an mTOR inhibitor. mTOR is the acronym for mammalian target of Rapamycin.  Some time after the completion of the Human Genome Project, a number of scientists looked at the effects of certain previously established medicines upon cellular functions.  Rapamycin was one such drug, and it interacted in a manner that restricted the amount of proteins any given cell might produce in the body.  Because proteins are the building blocks of cells, Rapamycin was considered a possible cancer fighter. 

Once a drug is discovered, a patent is filed with an expiration date of 14 years.  So from discovery to the end of the patent is the maximum period of profit, because after the patent has expired, then anyone can manufacture the drug at cost and sell for a modest profit.  The discovering agency has a window of opportunity to make enough money to offset discovery costs and make as large a profit as possible before generic drug makers enter the market and sell the same medicine at cost plus a reasonable profit.

Discovery costs are broken into two categories: Efficacy studies and Safety studies which are supposed to run side by side and be overseen by the FDA.  Rapamycin as an already approved drug with an expired patent would never be the researched into cancer treatment because the discovery costs could never be recovered before generic manufacturers undercut the price. 

So Wyeth purchased the drug and set about developing an insignificant change to the chemistry of the medicine so as to gain a new patent.  The drug Serolimus was developed without intent to take to market, but it establish a patent protection window.  In the midst of patent protection Wyeth reconfigured Serolimus to create Temsirolimus and sought to take the drug to market for a rare cancer that would not get the attention of the generic manufacturers.  Upon approval in that field Wyeth began the effort for widespread use of the drug in other oncologic fields by promoting study centers and paying grants to doctors to research the newest medicine with the longest patent protection.

US consumers bear the greatest brunt of cost recovery due to the high returns on health insurance for those that are covered.  As a result, the Temsirolimus that was sold at $5,000/dose before hospital delivery costs, is available through a Canadian pharmacy for $200/dose, and Rapamycin a drug that does the same thing but doesn’t require any hospital time $53/dose.  For my money, Pharmaceutical Company success is judged as being to milk the US American public for the most money for the longest time.

Enter the final person for observation today, the Doctor.  I respect the frontline clinical physician as one of the most underappreciated and least respected occupations in the world; however the greater the degree of specialization and sophistication the less enamored of them I become.  My personal experience has led me to see the best surgeons as the most arrogant which is to a certain degree necessary for the person who is willing to cut into a body to make it better.  And given my own hubris, I have found myself at odds with such arrogance.

But the Pharmaceutical Oncologist is a beast of another color.  They accumulated enough knowledge in such an odious field to be considered the best clinicians in the cancer arena; but as they wear the uniform of clinical physician they do so as they walk around in the masquerade guise.  Their real identity is that of the Experimental Scientist.  Except instead of cell lines, rats or mice, the subjects of their experiments are human beings.  And this is where the ethics gets fuzzy until you look at the money. 

As compromised as the Hippocratic Oath has become, at the core is the fundamental motto that we assume all physicians hold dear, “First, do no harm.” And as we all desire the best care when faced with unique or life threatening diagnosis we flock to teaching hospitals and seek out the ‘best’ doctors in the field.  When needing a cardiologist or cardiac surgeon, there is little to be discussed as the workings of the heart are well known and understood, it is the skill of the Doctor in interpreting the individual cases that sets them apart from their peers.

But what sets an Oncologist apart from their peers.  As much as we advance the knowledge of cancer as a field, we still know so little about the individual specifics, and more research is done on how we respond in generalities to various protocols of processes rather than to curing the individual.  The emphasis is on the disease process rather than the individual.  So the best Oncologists are not necessarily those who have had the greatest success, but the one’s who have been published the most in the most respected peer reviewed journals.

As Doctors are evaluated on how many patients cross the threshold of the hospital, the Oncologist who develops the highest profile by having the most/best articles published getting the notice of the referring physicians is critical to status.  The clinical physician disguise is maintained throughout the course of treatment, but once a patient enters Stage IV they are immediately evaluated for what locally available study is open to them.

Locally available means that a pharmaceutical company is willing to fund the research, the hospital still gets its cut from insurance, doctor gets to double dip as they are also paid out of the grant as well as regular fees and gets to do the research that may lead to publication, and the patient is given ‘hope’ while having been transformed from patient to guinea pig.

So unable to ask this question during treatment or upon revelation; Why was Evan denied Radiation Therapy?  I can now answer: He was denied because that would have led to less income and prestige for the doctor/scientist.  Triaged with a black tag upon entering one person’s Stage IV, he would be of no further value to the pharmaceutical oncologist if his tissues could not be used for experimental treatments.   

Today is 100 days since Evan suffocated to death because of the among other reasons, the hubris of doctors, the unadulterated profit motive of pharmaceutical companies, and a lack of unencumbered ethical oversight by a disinterested third party board at a hospital.  

When I began to pursue admission to medical school to be a better advocate for Evan, I was naïve but motivated.  Now that I have seen the system and recognized its need to be reformed, I find myself stuck in a place lacking motivation.

Wednesday, November 28, 2012

Santa, Saints, Post-Christian Christmas and Woop!

How to do Christmas this year? There will be few times like this Christmas season that will bring forth as many triggers of grief and sadness as the next four and a half weeks in our home.  So we have engaged in an esoteric debate of Christian dogma and doctrine to while away the time: Is Advent a season of preparation for Christmas or is it preparation for the Second Coming of Christ? This is our family rendition of ‘duck and cover’ or how to get under your school desk to avoid the nuclear bomb.

But what is Christmas and why will it hold so much pain for us this year? The Christmas holiday like many Christian traditions is the result of cultural hijack by a dominant political body.  Roman Christians (The dominant political force of the early first millennia AD/CE) seeking to indoctrinate animistic cultures they were seeking to assimilate into the empire took a common celebration (Winter Solstice) already in existence and colored it in Christian motifs.

Already having established a spring time format for essential Christian tradition of annualizing the memory of the resurrection of Christ (Easter), it seemed only appropriate to find a time for a second High Holy Holiday celebrating the earthly arrival of the man/God who will save the humanity from its own self-destructive tendencies.

So Easter celebrates the gift of everlasting life from God as demonstrated by Christ’s bodily resurrection; and Christmas celebrates the gift of Christ to the world so as to lead to Easter.  Only the likes of Jim Jones and David Koresh have figured out that the ultimate celebration of the Second Coming will involve self-sacrifice by Kool-Aid or Federal bullets. Too harsh you say. Too far you say. Perhaps, but none of us will ever know this side of eternity.

But enough of the future, let us venture back to the 1860’s and the advent of the commercial Christmas in the industrial hinterland of the future Germany.  It started with Christmas ornaments manufactured for sale rather than handmade at home.  And from there it became a source of exchange and the gift giving and ornamentation of the season began.  Christmas hymns go back to the origin of the Winter Solstice hijack, and Christmas Carols (Music to celebrate the season without religious overtones) to the Reformation Era of the church, the late 1400’s.

This history lesson has been brought to you by Ovaltine:  Remember to drink your Ovaltine! But really, what is the point?  If we strip away the overt and covert religion of the holiday we are left with humanitarian edicts of sharing peace and goodwill to all, covertly we term these attributes as love, peace, joy and hope all attributes embodied by the man who grew from the babe whose birth is celebrated on December 25.  And those bent to spreading the doctrine and dogma of eschatology, then the season points to the hope that Christ will come again sooner rather than later, wipe out the bad and guarantee the good.

Now, ask me if I care? Really!?!? How are we to reconcile a Divine plan of good for all humanity in the light of the theft of our son from our lives?  How is Evan’s passing related to Easter, Christmas or the Second coming?  I am fairly confident that I will not get those answers here.  And there is the rub of the moment.  In the midst of a down economy and a public lacking commercial confidence, in the midst of the most significant period of money making in the retail year – the engine of our capitalist society, we are trying to make sense of created-creator-breaker mental machinations while our minds seek to fend off the overwhelming influx of marketing and advertising geared to stimulating buying decisions.  The mental gymnastics of being lured to objects by sparkle, greed, covetous or jealous behavior is juxtaposed against the desire to do the best for those we love against the hollow hole of ragged pain that was the place Evan held in our hearts.

Santa (nee Sinta Klaus, Father Christmas, Old Saint Nick, etc.), the original Saint of giving knew that the gifts given were to be anonymous and to go to those had no hope.  That the gift was not the gift, that the act of giving was not the gift, the gift was in the hope that God cared enough to send a second chance, that there could be no quid pro quo just acceptance or rejection.  And look at where this has led to.  Capitalism is not to blame, but rather the pursuit of profits at the expense of all other priorities has so corrupted the season, that personal reflection of a profound loss is crowded out.

This year, the ‘Christmas’ letter was complete before Thanksgiving, Christmas lights will not be strung outside, and there is a plan to make the LEGO train under the tree a permanent creation so that the pain of construction year in and year out will be lessened. Also on the agenda is the continuing infrastructure of Evan’s Garden: Water feature completion with bridge, 2 walkways and a circle kit pave, and completing the water delivery to the greenhouse and the vegetable/herb beds.

We will sit out in that space of peace a lot, even in the winter, and we will listen to the sounds of so many wind chimes on the Dream Tree while in the back ground the water cascades from fountain to waterfall, all while grateful birds take their noisy fill of seed and sun.  And all around us will be life: the life that was, the life that is, and the life that will be.

Marx may have been right that religion is the crutch of the masses, and Orwell may have grasped that the proletariat will be happy with sports, pornography a constant war.  But I ask you, what is Christmas to you? Is it about the Christ Child? Or is it the promise of an Easter Sunrise? Or the hope of a Second Coming?  Do you find the meaning to be wrapped in the gifts given or received? Is it the celebration of family and friends while feasting the famished soul?  Or is it all wrapped into together in a hodge podge of love, hope, peace and joy?

I can’t honestly say for us.  All we hope is that we don’t step on any land mines, and if we do, that we don’t blow up anyone else with us.  Perhaps we will share and feel the love, seek out a personal peace, find a common hope in the common suffering and realize that to merely be alive is to be the joy.  Life is precious, life is fragile, and life is built on relationships, and so I say to our friends 600 miles away in Tennesse, “Woop!”

Tuesday, November 27, 2012

Inside the Phone Booth or Supermen love Civics and Economics

One of my guilty pleasures with which I partake is to peruse the news as Google sees it.  Google being the tool of research for many is also a place for viewing the real interest of users of the internet.  It is safe to say that Google is one of the dominant search engines on the web, and it is also reasonable to say that the greatest access to the internet occurs in the first world. 

Previous analysis of the 22,000+ people who viewed the blog of Evan’s journey might be interpreted as having an origin bias.  But that would place too great an emphasis on the physical location when the internet is a tool open to the world, even if politically restricted in some regions.  That said, the political fallout of the discussion of a dying child hardly warrant censorship.  And so we see highest viewings in the first world nations of North America, Western Europe and Oceana, although notably no hits from Japan or Korea.  The next level of interaction was by persons in “second” world nations, et cetera, et cetera.  The blog service is even kind enough to share this information in a color coded picture.

All of this is of course foundation for the following Google News list (links remain embeded) of the most popular news items at 9:00 am on this last Tuesday in November 2012.

So number 1 is a face shot of a person who was on the wrong end of a fist fight.  On this morning the entertainment headline writers got their job done right, while the faceless masses give credibility to one-on-one violence, a passion for seeking out the pain of others all in an effort to undoubtedly disguise their own pain. People in the story are not living well, the people covering the ‘story’ are lacking any sense of human decency, and the people reading the story lack the good sense to move on in their own lives and stop comparing their pain with those in the ’public’ eye. Next. . .

Number 2 is an issue worthy of coverage, worthy of being addressed by the involved parties and should be a high priority item of interest for the huddled masses.  Ideological intransigence between the two biggest power broking groups in the United States has resulted in the sort of gridlock that puts Los Angeles rush hour to shame. The political parties of the Democrats and Republicans are nothing more than idea Ponzi schemes regurgitating positions while doing nothing constructive, manufacturing no products but sound bites, and are populated by people who are ideologically fixed and intellectually dishonest while being led by people who only seek to gain and retain power on the basis of keeping just enough people happy enough to be re-elected. 

And so these so called political leaders at the elected Federal level are not seeking to do what is in the best interests of the country, but in the self-interest of keeping their constituency happy enough to vote for them in the next election.  Compromise is seen as weakness and as the Tea Party has shown, it does not take much for one organized group within a party to upset the machine and cause both the ideology to lose credibility while ensuring that the ‘other’ side wins.  But that is just representative of this election cycle, the Democrats had a similar challenge in the John Anderson and later Ralph Nader, while Republicans have had to deal with the likes of Ross Perot and the threat of a Michael Bloomberg or Ron Paul third party.  But I digress not unlike the President or the news coverage.

Let us start with the premise that few people liked Civics, fewer people like Economics, and the number of people who enjoyed both can be fit in a phone booth.  Civics is based on the principles that we elect to office those people we believe are best suited to do the best job – not to do what will get them reelected.  Economics is the study of values as expressed in purchasing power.  So in our current system, the elected take actions that will get them reelected, and place the highest value on those items that are in their own best self-interest of reelection. 

The President is elected by an electorate who wants the office to present to the world the face the people would like to have represent them.  Not for their leadership ability or skills in moving the country forward.  At best the ability to manipulate the fifth estate to present the most important issues in the most favorable light is perhaps the extent of day to day leadership.  Please see Ronald Reagan or Bill Clinton as examples of this skill, while Jimmy Carter and George H.W. Bush never grasped this skill.  Our current President has mastered the oratorical, but is average at best in bringing the populace to common ground. 

That he now wants to take a leadership role in the ‘fiscal cliff’ budget talks is admirable, but this is not a time or place for public appeal.  This is disingenuous and smacks of digging his feet in rather that communicating and compromising.  If ever there was a time for a smoky back room deal, it is during the lame duck session of an unchanged political landscape.  Both sides would take their PR lumps from their core constituencies, but there is another 22 months to heal those wounds.  These are the two months every two years when the government actually has an opportunity to lead and make some difference.  But unfortunately it appears that the phone booth on Capitol Hill where the Civics and Economics nerds used to live is a vacant property.  Prediction – the Federal car is going off the cliff with the hands of extremists at the wheel.

The people in the story are you and me and we are not well people, the people covering the story cannot do it the justice it deserves because they would have to compromise core values to share opposing points of view in a palatable light, and the average readers could care less about anything other than the fear mongering that the average family will have to pay $2,200 more in taxes next year. 

Story 3 is about a snotty child actor, Story 4 is a tragedy of a family who decided to take their dog on a walk at a beach with 10 foot waves – dog jumps in water and gets in trouble, then the family goes in after the dog, everyone dies because of a ‘sneaker’ wave.  Question of the day – what is sneaky about a 10 foot wave? While the next set of questions about what was going through the mind of the family outing leader go begging, let me ask a follow-up, what makes this personal tragedy worthy of being in the top ten most important stories in the world on any day?

Story 5 is politics, chaos, mayhem and global warming/climate change all wrapped up in the Jersey Shore, Story 6 is about sports

Stories 7 and 8 deal in part with the world as a whole but are wrapped up in human intrigue angles.  In Egypt the underlying story is whether countries ruled by dictators are more prone to want to continue with dictators or at what point does democracy/revolution reach a tipping point.  Similarly the discussion must ensue: is it more important to have a degree of freedom of speech or is it more important that there exists a principle of one person one vote, and is this potential rabble democracy in need of tempering by the principles of governance as a republic.  World Civics and World Economics  

Stories 9 and 10 delineate upon a dominant theme of the top ten.  The consuming public of the United States places more value in hiding their heads in the clouds of entertainment news, gossip and scandal because they can relate to seeing other people, even larger than life people suffering through the challenges of every day.  It comforts many human souls to see others in more pain than themselves, rather than facing the pain of educating themselves about who is leading them, why they are travelling the path they are, and seeking to engage others in dialogue about what is really important. 

Listening to the updates on the past weekends shopping sprees, people vote with their wallets and many people do not see the government avoiding the cliff so they are holding onto their money in anticipation of paying more to the government.  This lack of confidence in the government leads to a lack of confidence in the individual.  Unconfident individuals do not buy stuff, no stuff bought means the economy suffers.  If the US economy suffers, so does the world as a whole.  Extremist viewpoints take hold and wars are fought  because extremists cannot compromise. 

A US government in gridlock, interested only in meeting the needs of their own extremists leads down a road to the rise of other extremists across the globe, most notably among those whose agenda of aggressive behavior against the US is fomented by a Capitol Hill more interested in getting reelected rather than doing what is in the best interest of the country.   

What might be taken away from these observations on the most popular internet stories of today?   Supermen(incl.) - true political leaders -  love Civics and Economics; and they (both Supermen and C&E) are critical to understanding the world in which we live.  Political Leadership is currently an oxymoron in our society.  And finally that he US consumer believes that ignorance is bliss.

My advice, decide to participate in dialogue on the important issues that affect others, and by dialogue I mean to say walk a mile in the other person’s shoes and engage them with an open mind.  Understand that facts, like statistics never lie; but statisticians, politicians and spin masters (No matter the news organization they work for) and don’t be afraid to put your mind numbing fascination with celebrities in the same light as alcohol, marijuana, heroin and crystal meth.

Any comments on today’s observations might include your favorite news story of the day, and your favorite politician and why.  This should be good.

Monday, November 26, 2012

A Beginning and Stage IV

So I have threatened that I would start to write again.  I don’t know where this will take me or you, but I have come to an understanding that without writing, I am a lesser human being.  For those who do not know me, it would be better to understand who I am from where I am and what has led me to this place.  From that point it might be possible to establish a dialogue.

I am a middle age christian man. I am a husband of many years, and the father of two amazing children.  One a teenage daughter is not only the apple of my eye, but also the potential bane of my existence as she struggles with the stresses of growing into adulthood as a member of a first world society while she comes to grips with all world issues.  My son, Evan, died this past August.  The story of his valiant fight against cancer can be found at But the influence of his life and the legacy of our relationship is to be the spine of this blog.

Let me be clear at the outset, I love my son, I see him through rose colored glasses and yet I also know that he was not perfect as a human being, but he was as a son.  He was like many of us, a journeyman in the first world, who as he sat in judgement of others only saw their foibles and imperfections. But where he differed was in his lack of expression of those judgements and in the accumulated wisdom he held because of his unique circumstance.

As a father of a child who died of illness while existing in the first world, I carry an immense portion of guilt surrounding his death, not the least of which exists because of the first tenet of fatherhood - keep the children safe.  It is a flawed and self-destructive thought process, and guilt has long been associated within the universal christian church as a sin; but it is also a useful tool of reflection to better see the past in slow motion. In this manner it is possible to explore the things that truly might have been done with malfeasance versus decisions made with the best of intentions with the best efforts of preparation.

And so begin the Observations.  For those readers who have asked that the writing continue, that they enjoyed/benefitted from the musings of people going through the midst of highly challenging circumstances, we bring you life in the World.  

Christians have embraced their perjorative name as a badge of pride.  This original pride was for survival in the face of persecution.  That it  has become the baseball bat of hegemony and hubris, the weapon of choice for a dominant culture that is self-defeating and smacks of the self-righteousness, and power without restraint.  

The first world, with the United States at the fore, is heavily influenced by a religious right wing that wields the name of christian as a cudgel of arrogant hubris to beat down all who disagree with their point of view on both settled and unsettled issues facing society.  This is problematic enough but the resulting failure to engage any discordant voice in any attempt at fruitful dialogue has hamstrung the political right and driven the governmental gridlock to the left.  

I describe myself as a conservative, but this is tempered as a follower of the christian way.  I go to church, but as a good protestant I do not fully trust the leadership and hold fast to my skepticism.  Skepticism that is borne from a lack of biblical study at a level worthy of discussing doctrine and dogma.  My interests lie in the practical application lessons in the bible and as modelled by Christ.

As a person who has experienced the practical application of the hand of God in action, my desire for understanding is focussed on such issues as day to day survival and influencing those around me to engage in open dialogues resulting in positive growth of relationships.  Like grains of sand on Abraham’s beach, the harder we try to hold a handful of people to our way of understanding, the less we can actually influence them in this life. And like the grains of sand in a hand held too tight they are blown away by the wind. Our call is not to grasp the sand, but shelter it from the winds and storms of life so that life can bloom.

This piece of prose to this juncture has been a hodgepodge of what has been mulling around in my mind these past three months.  I have procrastinated and sought distractions from dealing with the 400# gorilla in my room, the death of my son.  

For the past 5 years, I dedicated my life to becoming the best advocate I could for him especially in light of the initial treatments surrounding his diagnosis back in 2007.  For his last 6 months from late February until he passed away in mid August, I was not only his primary caregiver but his constant companion 24/7.  His loss had a profound impact on all who knew him, for me it was a cataclysmic event that I did not feel I could face. I can’t face it yet, but need to work around the grief to ensure that I am not swallowed whole by the immense sadness.  

Many who are reading this will have read the postings in and you will be able to grasp the pain and horror of facing the loss of a child in slow motion.  What no one could predict was the intensity of the pain nor the motivated ability to avoid the pain.  There are a series of self-destructive processes such as guilt or visits to prior places of refuge that merely serve as triggers and synergistic multipliers of the anguish.

But the defense mechanisms are hindered.  The anger burns so hot inside of my heart and mind that to give it air and oxygen would threaten an explosion that would result in a fire of ill-spoken, ill-advised words of condemnation and visceral hatred.  This of course is antithetical to the legacy that Evan left that we should all ultimately seek peace through love.  But the necessary expression should not be tried until one has enough self-control to keep the acid bile down instead of verbally vomitting on the nearest unsuspecting recipient.  I hope that I have reached such a point such that what is written here is both palatable and valued, but you will be the judge of that.

But what is there to be angry about? Did we not do the best we could against a horrific and unrelenting disease? Was Evan underserved or influenced into a poor decision path?  No, and No.  While we have access to the ‘best’ medical services in the world, we are still very subject to the whims and foibles of human beings who occupy the bodies of providers we have not real options to follow or reject because they frame things in manners that are in their best interests first, and not the best interests of the patient.  When there is congruity in these positions no one suffers, but when a patient is shifted from a possibly curative position to a non-curative position if not imminently fatal one then all bets are off.

At the gist of the medical beefs are two primary issues. The first lies in the patent protection practices of pharmaceutical companies.  This pursuit for extended profits is directly linked to litigation defense anticipation while covering the overly burdensome regulations that are supposed to safeguard the public but are in and of themselves typically knee jerk reactions to individual situations, effectively closing the barn door after the horse got out.

In Evan’s case, the drug of choice by the doctor resulted in weekly trips to the hospital for monitored infusions for a medicine he could have taken daily in a pill at home.  The infusion medicine was the same stuff under a different name and cost 50 times as much as the pills, and that is before the hospital added their $1,000’s per weekly visit.

The second issue has taken a much greater portion of my anger supply.  Medical providers not telling the whole truth, prevaricating to protect their position, from a christian perspective ‘sins of omission’.  When it was determined by us ‘stupid’ parents that surgeries were not helping, and were likely hurting, we were told that radiation was not a viable option, that it would not work, and that it would lead to other problems.  We received this news in good faith believing that radiation oncologists had been contacted, and that their curative opinions were solicited.  Like good patients and parents we took them at their word.

Evan received radiation therapy in late May and early June and over 10 days received enough radiation to kill 2 grown men, but it was targeted, precise and he took it like a champ.  The original tumor(s) he had been battling were crushed by the radiation, and he would have been viable candidates for surgical removal with follow up radiation and chemo.  Small problem; this treatment option was left until he was a terminal patient and the radiation was to allow him to die without losing the use of his legs - not that anyone could or would tell that to him.  The disease had so infiltrated his lungs that an xray taken 4 weeks before he died showed all the lobes of his lungs as opaque areas of spreading tumor.

And then the kick in the crotch, a Radiation Oncologist shared that Stage IV patients have life extending treatments withheld because any tissue exposed to radiation negates its use as a clinical trial patient for any drugs being developed.  People with Stage IV diagnosis’ are not patients to be cured, they are lab rats for experimentation.  How much more valuable then is a child who is diagnosed Stage III 5 years ago and Stage IV 3 years ago?

Like most problems in the first world, the quickest way to the answers is to follow the money.  But more on that later.