Dark Night of the Advanced Placement Soul

I read somewhere that the oldest Veda in the world starts with the sentence "All error arises from confusing the subject with the object."

That impressed me, an Advanced Placement high school student, for two reasons.  One, it suggested the vaunted science of semiotics was anticipated by an ancient Indian civilization some 5 or 6 thousand years ago.  Two, it seemed true.

Many years later I tried to find this Veda, and failed.  But the construct lives with me.  And it informs my perception on a subliminal basis.

When I think about Cancer and Me, I wonder, "what is the subject, and what is the object?"

It is a truism of a testy and defiant times that no one wants to be objectified.  That has become baked into Freshman Orientation at every school in the U.S. and at least one other country, probably France.  I don't want to be objectified, ergo I am the subject, and Cancer is the object.

But I am supposed to fight cancer.

You fight enemies, and they have agency, guile, strategy, and evil intent.  You don't fight objects.  You fight with objects, in your battles with known or invisible Others who put the objects in front of you and say they do one thing while your experience teaches you they really don't do that thing.  Our computers, medical devices, running shoes, hedge trimmers, grooming sets and travel bags never quite live up to their promises.  Objects all, and they are not our enemies.  The people who design, manufacture and market them sometimes act like enemies subverting our domestic tranquility with their insidious subterfuge, promising one thing and delivering something that breaks, sags, stinks, burns or just sits there instead.

So if we fight cancer, that means it is a subject.  A sentence contains a subject, verb and object, not subject, verb and subject.  The subject is the entity, the being.  The object is the inert thing, even if it has batteries, it has no agency except its ad agency.

If I fight cancer, what is the object that the subject is confused with?  I am.  I am become the object, and by my objectification, I am giving permission to other subjects to prod, poke, poison, promise and discard me as the subject sees fit.

Is this just the idle word play of a humanities-deranged mind?  The mildly toxic effluent of a wasted education?  Or is there something to this subject-object thing?

I need to decide, and soon.

If I am supposed to fight cancer, and I don't, then I am either a coward or a traitor.  There is no waffling ont he front lines.  If I do fight cancer, and it has superior skills and weapons going into the fight, as it is claimed by the literature, then it is a suicide mission anyway.  When did Kamikaze become the model of patient survival?

In the heady days of Eisenhower and Kennedy, when there were going to be robots cooking the chickens in every pot and the flying car was just one model year away on GM's drawing boards, anything was possible. And so they invented the Advanced Placement program for smart kids.  It was sold to schools as an enhancement of learning for the best and brightest (the ones who gave us carpet bombing of civilians, no coincidence).  It was a patriotic amenity offered to a few schools at first under a special grants program from the United States Air Force.

The United States Air Force gave 20 or so school districts over 20 million dollars sometime in the late fifties to create special education programs for the gifted.  The leaders of the future.  When I was put in such a program in seventh grade, I was ghettoed into a small cohort of smarties, eggheads, whiz kids that were socially disrupted from the life of the Junior and Senior High schools.  We were baked in different ovens.  A friend of mine who was a student volunteer in the Principle's office looked in our files, and she told me my IQ was 141.  Genius level.  I had it made.  All I had to do was keep my hands in the car and not fuck up and I would be graduated with a golden meal ticket my parent's couldn't have afforded.

I mention this because I did get a first class education.  First class doesn't describe it.  All of my primary teachers had PhDs.  They were recruited from the top ranks of a massive suburban school district.  I say massive.  We had over 2000 kids in my graduating class in 1965.

And I was their Newspaper Editor, National Honor Society member, Student Council Executive, Regional Journalism Award winner, Speech and Debate honors winner, Best Actor, yadda yadda.  Oddly enough, I graduated pretty far back from the front of the class in overall grades, despite straight-A's in my senior year.  From 7th through 9th grade I was lost in a pack of mongrel savants, a stray dog in a kennel full of well-groomed, socially connected representatives of the professional class.  I was the ugly duckling.  But I swanned in my Senior year.  And in the course of discovering my intellectual powers and organizational clout, I absorbed a bounty of high class didactics.  My professors were impatient to spare our cohort the ignominy of ordinary development.  We were treated like scholars, artists, philosophers in training. We would absorb the cream of Western Civilization, swim in the limpid waters of Aristotle and Plato, thrash with olympic fervor among the great minds of the Enlightenment.  We even donned the costumes of the Depression and the Holocaust, acting out FDR's vision for a classless society led by a newly minted club of philosoper princes and princesses, and suffering the horror of unspeakable evil in the hands of the Irrational unconscious raised to a national temper among the Nazis.  We read Kant, Descartes, and Thomas Paine, and we read Tolstoy, Kierkegaard, Nietszche, Sartre.  Some of us went further and read Genet, Kerouac, and Khan, the spokesman for Mutual Assured Destruction.

All of this feverish intellectual green house effect was occurring in a suburb of Minneapolis, in flyover land.

In the course of these studies, I learned syllogism, logics, rhetoric, math.  I learned to observe, to measure and compare, to contrast and conclude with probity.  I learned to think.

It was the beginning of my downfall.

I thought everyone knew how to think.

It took me five decades to realize that the average mind goes to its silent end blissfully untouched by anything resembling disciplined or formal ratiocination.  Thinking is not just a lost art.  It is an art that has never been prized.  Except for an odd enclave of heated idealistic PhDs cast among a kennel of overachieving nerds in the early sixties, in the Midwest.  We imagined ourselves, not entirely in error, the true heirs of Socrates' academy.

When I met students from the Ivy League, I met kindred spirits. But they all suffered the sweet, secure asymmetry of mentorship.  In the big schools like Yale, the fledgling intellectual was taken under a real philosopher or jurist's wing and that apprenticeship kept doors open into dining halls and board rooms for a life time, but it also handicapped the fledgling to the errant flight, the idiosyncracies of their mentors.  And their fealty, as it was indeed medieval in form, won over reason or common sense when the chips were down and real dilemmas had to be resolved.

I was under no such contract.  When I graduated high school, without knowing it, I had become a Ronan, a Samuri with no master.  I also had barely run through the skills training, but that didn't matter in the heady days of revolution that set fire to the imagination and draft cards of the nation, in the sixties.

So I come into the battle with cancer, wanting a time out before the battle even engages.

While every person and institution around me is throwing the kerosene of passionate concern on the fire of an epidemic disease, I want to organize my notes and think from First Principles.

I want to define my terms.  Challenge assumptions.

Think.

Before I buckle on my buckler and prepare to die for the glory of forestalling death itself, I ask "Really?"

What is really going on here?

And no one knows.  They push their carts down the street and hawk their wares.  They burrow into the hillside and chase rabbits along the banks of the streams, and call it science and research and medicine and glory.

But it seems like experimentation on live human subjects underwritten by corporations who stand to profit from cures, and overseen by regulatory agencies staffed with lawyers who are adept at mixing agendas in the huge vat of publicly owned companies financial statements and serving up profits to the first in line.

What is going on?

Am I dying?

Is my doom sealed between the envelope and its flap - the envelope of sluggish regulatory change and the flap of patent medicine rushed to market ahead of angry investors brandishing pitchforks and torches?

I am trying to think here.

I want to believe, like Muldar.  But the UFOs and the Atlantean Mages I want to believe in are the sci-fi protagonists in a mass hallucination of a war, in which my body is a prospective Borodino, my blood cells are Napoleans feckless infantry, and Chemotherapy is the  arrogant if principled assault guards of a commercialized empire.

Before I can believe, I have to think.

It isn't my most charming feature.

Before I can die, I have to believe.

That aligns me with the saints, mystics, and live human subjects of innumerable experiments over the ages.

Before I die, I have to live.  I think.

My blood takes me to school

Life goes dormant for a season.  It is not death.

So okay the shock waves have passed through me and the panics and terrors have subsided like flappy cubes of jello in a cold dish.

There are many things about the first two posts that I should change in the interest of making the right impression on strangers.  But I won't.  I just want to leave a trail of awakening here.

So when you get the slow motion death sentence, you hear things.  You mis-hear things.

For two and a half years I have delayed doing serious research on CLL.  I created a cartoon version, broad strokes, big eyes, goofy saber-toothed tiger face, sketchy.  The first two posts present the animated movie of my brain covering a vast terrain on flappy jello legs, falling into tide pools, seeing sabre toothed tigers in my reflection.

My recent visit to Mayo Clinic held a blow torch to the cartoon.  Now I need to start building a more sophisticated internal model of both the basic physiology, the disease itself, the logistics of treatment.  Etc.

If you have CLL, and are in the early stages, and have read this far, here is a paper trail of my discoveries so far.  I am building a decision model for assessing the suitability of various treatments to my specific pathology.

It starts with the initial diagnosis.  I received, and continue to receive, high quality treatment from Mayo's Hematology department, under the coordination of Dr. Sameer Parikh.  I started my journey there under the care of Dr. Letendre, who retired shortly after our first two visits.

The first tests taken on my blood in 2012 showed that my White Blood Count (WBC) was already elevated to 3000, which indicated a likely pathology but it wasn't noticed in the context of my surgery, and the prep for that.

This story is told in detail in my first post.

The research I have done over the last week has left me with some difficult realizations.

1. My status as a new, untreated patient limits the kind of treatments I am eligible for.
2. My age and pathology further limits me.
3. And finally my insurance limits me.

While there are promising new drugs called biologics, or targeted treatments, which are fine tuned to my own genetic profile, I am not eligible for them in a standard treatment format.  I might be able to get signed into a clinical trial.  The downside of that is that I might be one of the subjects in the trial who is given a placebo or an older form of chemotherapy instead of the new treatments.  It is a form of lottery, or roulette.

To further complicate matters, public forums for CLL patients are already questioning the value and safety of some of the new drugs which the FDA hasn't even approved for initial treatment.  I receive a mail digest of correspondence among one group of CLL patients, and several of them jumped on the bandwagon when the subject of idelalisib (marketed as Zydelig) came up.  One patient detailed their acute liver failure while on a course of the drug.  Another said their reaction had been so severe that their oncologist swore he would not recommend it for anyone else.  These are anecdotal reactions.

But they are what I, a newcomer to the whole scene, encounter as I try to walk down a path of education about my disease.  And they are not coming from the wild fringe of extremists who carry a grudge against all organized modern medicine.  These anecdotes come from civil, educated, cooperative patients who are willing to undergo great discomfort in the interest of wresting a few more years of life out of their situation.

I talked to Dr. Parikh yesterday, and he said my best chance was probably a combo approach with two Intravenously-administered drugs: BR, as it is referred to, is an updated regimen designed to replace the older FCR regimen which has solid research credentials, especially for people in my demographic of male near 70.

The side effects of all the drugs discussed include severe to fatal lung infections, over-all body sores, loss of taste for food, nausea, weakness, increased white blood count before it declines, a susceptibility to infection from any source which makes even going out in public a high risk endeavor at some point in treatment.

All cancer patients who have undergone chemo and radiation are familiar with these struggles.  It is only recently that the class of treatments called biologics have come through research and are in the FDA pipeline for approval.  They have caused excitement and raised hopes because they can often be taken orally instead of intravenously, they don't seem to have the same side-effects, or at least the severity is muted, or at least they are fewer for any given drug...so it seems.

I say so it seems, because there is an underlying reality to treatment of cancer in general, and CLL in specific, that makes research into the efficacy of particular regimens extremely difficult.  

On the dormant blog called CLL Topics, the author investigates several clinical trials in some detail.  While admitting that her background in scientific research doesn't make her in expert in medical trial design, she notes that the ptotocols and criteria for success in medical trials are laden with anecdotal and heuristic (unprovable but workable) shortcuts.  As a result, it is often impossible to work backward from trial outcome to determine the full set of variables being tested, and how reliable the tests are on that set of variables, and how predictive, exactly, the outcomes of the trials are.

This is because they all represent, in effect, experimentation on live human subjects.  This is a fraught subject with a history littered with atrocity and abuse.  Modern researchers/experimenters take pains to conserve priorities of patient comfort and the integrity of the methods in the face of overwhelming challenges to full scientific treatments that would yield much more robust results for future pharmacological invention.

The Nazis didn't labor under such constraints.  Curiously and controversially, the AMA and the NIH didn't either when they sanctioned experiments on prisoners, black people, poor people, soldiers and other unwitting civilians through the last century as they worked alone or with the CIA in researching syphilis treatments, truth serums, etc.

In theory and policy we have left much of that behind in the last century.  In practice it doesn't take much hair-splitting to question the whole realm of live human experiments.

For example, my doctor said I wouldn't be eligible for a first round treatment with Imbruvica, despite its approval recently by the FDA.  It is a biologic that is supposed to have far fewer and far less distressing side effects than old style chemotherapies such as chlorambucil.  It was fully approved for first round treatment in 2014.  I am not eligible according to my insurance company, according to my doctor.  He offered instead my participation in a trial, an experiment, that assigns patients at random to one of three groups: one receives old style chemo, and two receive Imbruvica in some combination.  He said my chances were two out of three of getting the advantage of the new drug.

Why can't I just get the new drug?  It is a rhetorical question.  A detailed answer would absorb too much of your time and too much of my good feelings about life.

Why can't I just get the best drug available at the moment?  And, equally important, why can't I know if it is really the best drug, or if certain aspects of the trial outcomes have been emphasized at the expense of the over-all results? For example, a recent German trial reported that the side effects of a biologic treatment were much less than with a conventional chemo treatment.  On closer examination of the published results, it was shown that only one side effect was diminished.  Other side effects were similar are greater, and much greater as the subject's age increased.

This latter question arises thanks to our source at the CLL Topics blog, who had the experience and connections to understand which pharmaceutical companies were sponsoring which trials outright, which were paying honoraria to the doctors involved in the design, etc.  Without condemning it as a corrupt system, she acknowledged that perfectly honorable people were participating in a system that could tip into misrepresentation at some stage of the pipeline, without it being clear in the outcomes.

Even representing the trials and their outcomes is a challenge when you are dealing with experiments on live human subjects.  Some trials were performed, and results reported, on fewer than 20 subjects.  According to sampling theory, which is a mathematical discipline, the minimum number of cases you need to try in a trial is determined by the total population of interest.  In this case, say, it would be something like "all males over 60 with less than 5 years remission after a first round treatment with FCR."  That might be considered the target population from which the 19 subjects were drawn.  In practice, the actual distribution of subject attributes never approaches that degree of purity.  But sampling theory tells us that if there are 20,000 males in the world over the age of 60 with fewer than 5 years remission after a first round treatment with FCR, then for a 95% confidence level and a confidence interval of 4,  our sample needs to be at least 583 subjects.  Read bout confidence level and intervals here.

Bottom line?  You can't set up a spread sheet and compare treatments across the board.

What does that mean for me?

I must consider the quality of my life now.  How many years do I have left?  What is the nature of the untreated progression of the disease?  How much will I suffer from treatment related effects, compared to the effects of the disease itself?  Who can I talk to about an objective assessment of these things?

I have to throw in the towel for the time being.  It is robbing me of sleep, any peace of mind, and severely affecting my daily routines and relationship with my wife.  And I haven't even started treatment.

Policing the killer T cells -- Cancer in the Body Politic, Civil War inthe Body.

Your bone marrow creates lymphocytes; programmed to die after they eat the invading organism, such as a virus or bacteria, that triggered their creation.  If they don't self-destruct, another kind of white blood cell called a "killer T Cell" is called out to destroy them. The body flushes the dead white cells out.

The complexity of the actual biology involved is mind-boggling.

And we have learned some of the most important aspects of it only within the last few years, as the powerful tools of genetics and biostatistics have given us a way to look into processes that we could only make assumptions about before.  There is a revolution going on.

And sometimes that revolution seems like a civil war.

And sometimes the medical establishment seems to be on one side of that civil war, with the alternative medicine community is on the other side.  Not always.  But at many critical points.

And sometimes the cancer patient, in contemplating new developments in their disease, feels like they must choose sides. It is an awful feeling.  Another burden added to the complex sense of loss, helplessness, guilt, and claustrophobia you have when your fate suddenly closes in on you.

Today I want to talk about the civil wars regarding cancer, and where I think fit in the scheme of things.

First a little background.

I am curious about a lot of things: photography, history, love, how people think, etc.  One of my big themes for a few years has been the Spanish Civil War.  I was as ignorant as most people until one day around 1996 I woke up from a dream about the Spanish Civil War.  In the dream, an old man and his granddaughter were sitting high above the Ebro River, near Zaragoza, Spain.

The Republican forces were barely holding the area, and in the course of some fierce local battles, his son, the father of the little girl, had been killed.  Her response had been an emotional shut-down, followed by the eruption of a terrible skin rash that kept her awake; made wearing clothes almost unbearable; and filled her mother with fear.

The grandfather, knowing of his granddaughter's love of all things American, sought out an American volunteer with the Lincoln Battalion, and convinced him to provide some Ivory Soap in it's American paper wrapper.

He gave it to the little girl, who took a bath and soaped up, and was feeling a bit of relief for the first time.  They had taken a walk to a vantage point above the river, and sat thinking their own thoughts about the war, and the death of his son, her father.

Believe me, I am as surprised as you to know that you can wake up from a dream with such a fully realized story line.  I set about learning as much as I could about the war, the times, the customs of the place.  Within a few months I had written a draft of a short story.  I put it away.  But the Spanish Civil War kept recurring in various ways in my life.  One of my favorite photographers, Tina Modotti, gave up photography and became a political operative for the Comintern during the war.  When I learned this, I was drawn deeper into the mystery.

Over the course of the next two years I made contact with a family in Spain whose mother was the same age as during the war as the girl in my story, and who had lived in the same area.  She read my draft, and was almost distraught with the memories it brought back to her.  But she helped me refine some details.  I delved deeper into the complex political situation before the war, and added a new character, a young Falange soldier who had been wounded in the fight in which her father had been killed, and who was hiding in a cistern on their property, in a neglected vineyard.  The girl brings him food and keeps his secret from the family.  He tells her of his reluctant career in the Falange, and his hatred of war.

Whoa! What does all this have to do with me learning and adapting to my Leukemia?  You might ask.

When I started studying the Spanish Civil War, it was remote, and fairly simple.  It was a battle between the forces of Good -- the duly elected Republican government who were emancipating women, providing education and land to the poor, etc -- and Evil -- the Fascist Military rebels who wanted to destroy Modern Spain, reinstitute a tyrannical government in service to the ruling classes and military, deprive women and the poor of their rights and livlihoods, limit education, etc.

This cartoon version served me well enough at the beginning.  But shortly after finishing my second history, and starting to read a contemporary novel, I began to realize that All is Not What it Seems, as they say in blurb-speak.
For starters, the right-wing Falange was started by Jose Antonio, the son of the dictator who had ruled Spain in the 20s, but who had very liberal social ideas.  He wanted to emancipate women, provide education to the poor, improve medical service etc.  And/but he was an authoritarian, and he was killed on the eve of the revolution in 1936.  In the subsequent vacuum of power within the Falange, Franco appropriated the movement to his own ends, and fashioned it into a more repressive and anti-modern force than Jose Antonio had intended.  The result of this theft of a whole political movement was a lot of educated, principled young men being forced to fight for a system of values they found personally wrong: Medieval in concept and brutal in its effect on the majority of Spain's population.  On the other side, among the Republicans, the Anarchists had provided the emotional engine of defiance to the military uprising, but they were pushed aside, then openly persecuted, imprisoned, and even killed by the men they had fought with months or days before.  The cause of this internal strife was the presence of the Soviet political and military advisors who came to Spain with military aid from Stalin, and stayed to take over the prosecution of the War on behalf of Stalinism.

All was not what it seemed.  Many good people took positions that events did not requite with justice, and many bad people exploited the confusion of the situation to entrench themselves on behalf of a foreign agenda.

At the risk of oversimplifying, but in the interest of moving my story along here, I will say that the whole nation was thrown into a crisis of identity, wherein the true Self of Spain was confused with the Not-Self of a rebellious military caste, an obsolete aristocracy, and a deceptive and ruthless cadre of international spies and manipulators.

A crisis, existential in scope.  The fate of the nation depended upon resolving the identity of the people of Spain, and exterminating or driving out the Other.

And cancer of any nature shares that existential scope, and ontological quality, of being versus not-being, self versus not-self.

A healthy body allows a lot of foreign material to circulate in the blood, and even lodge in the gut and be carried in the fatty tissues.  But it has no problem distinguishing the self, the healthy components that exist for the well-being of the organism as a unity.

A body experiencing cancer at the stage where it threatens the very existence of the host body seems to become confused.  It responds properly to incorrect signals and improperly to correct signals.  Identity, communication, generation of new tissue and the disposal of old and foreign matter, become issues at the heart of a crisis that slowly envelops the whole person.

The more you examine the details, the more confusing it gets.  And the more confusing it gets, the more people rely upon personal affiliation to help them sort out the complexity.  Until affiliations clash.

When you are being told by someone that you must poison yourself to become well, you damn well better trust that person's intent and qualifications.  If there is any doubt about the messenger, or the message, no one in their right mind is going to submit to making their discomfort or suffering even worse on the word of a stranger.

When the disconnect becomes an issue in treatment and decision making, the affiliations coalesce into "sides" like children's games and political parties.  You have Pom Pom Pull-Away.  Red Rover. Capture the Flag.  What you don't have is calm decision making with careful consideration of costs, benefits, risks, and the effect of various outcomes on all the people impacted by the problem.

You have the makings of civil strife.  It can become civil war, or simple abandonment.  When the scientific establishment treats doubt on the part of patients and their family as betrayal, or an insult to their professional integrity, then egos drive wedges between people who need each other to survive.

If you walked into a clinic with a broken arm, the doctor doesn't say "We can set the bone, or you can go home and see what God wills for you."  The doctor sets the bone.  You don't ask how the bone cells grow back together, and what guarentees you have that the healed bone is as strong as the old bone before the break.  You accept on simple faith that something good is being done on your behalf.  And you are probably grateful.

This changes as you increase the complexity of the diagnoses, the complexity of the systems invovled in the disease.  I spent six months getting a simple diagnosis of Constrictive Heart Failure.  Most of that time was spent dealing with Physician's Assistents, some of it with a Cardiologist who recommended against the catheritization that would have revealed the scar tissue immediately.  He recommended against the procedure because it was costly, invasive, and he felt the odds of finding anything were quite small.  So another two months went by before I literally walked away from one HMO and admitted myself into another, where we started over, and resolved the issue in a week because of vastly different philosophies of risk, probability, and the decision algorithms to be followed in the presentation of my symptoms.

It makes you crazy.

Then something like CLL comes along.  It isn't local to an organ.  It doesn't have a tumor.  It is distributed throughout the entire body several times a minute, thousands of times a day, but they miraculous efficiency of the heartbeat.

The tools that allow modern hematologists and oncologists to assess the status, and make recomendations for treatment, are changing almost as fast as the telecom industry has changed in the last 15 years.  Biostatistics and Genome sequencing have provided powerful lenses for seeing into the processes of cell replication that were opaque at the turn of the century.  We get a thousand, ten thousand times more information from CT scans combined with DNA analysis than we had twenty five years ago.  Because of human nature, our institutions have not adapted as quickly as the technology, and our front-line teams are not as agile as the software the researchers are constantly tweaking to wrest the last bit of correlation out of teradata.

Let me bring this home.

When I finally sat down last year and wrote a 300 page novel about the Spanish Civil War, I didn't take sides.  I concentrated on the human stories.  I didn't ignore the political and social realities.  In fact I took pains to be historically accurate, including accessing over 150 books and innumerable articles.

But I didn't take sides.  I didn't have to.  I wasn't on the ground during the war.

With my cancer forces me to confront some underlying conflicts in our society, and it seems as though I am going to be forced to take sides on the issues surrounding chemotherapy and other drastic treatments.

I don't know what I will do.  But I will be on the ground during the conflict, and I want to survive.  We'll see.

I take my death out and play with it, then put it away and get on withlife

Winners and Losers.  Which are which?

The sometimes hateful irony of jokes.

In 2012, in January, I went to Mayo Clinic with feelings of severe malaise, swollen ankles and feet, shortness of breath, ascites (significant retention of fluids in the abdominal cavity), and several other symptoms which had at different times been ascribed to various organ failures.  After a few trials, tests and interviews I was sent to a Cardiologist, Dr. Timimi, who walked into the examination room and announced that I had constrictive heart failure, by the look of me.  Subsequent tests, including a full heart catheterization, proved his old-school sight diagnosis correct.  I submitted to open heart surgery to remove the heart tissue which had become scarred, and in so doing, had constricted the basic functions of my otherwise healthy heart tissue.

The surgery, (performed by a world-famous heart surgeon who seemed surprised at my insistence on not using a heart-lung machine except to absolutely save my life), was successful.  I didn't use or feel the need for any pain medication after returning from the recovery room.  Over 16 kilos of fluids were drained from me in the course of two weeks.  My weight went from 275 to 235lbs.  I had already had 3 kilos drained before the surgery, so in the course of a month my body weight and image changed from Grizzly Adams to Professor Henry Higgins, tall, slightly stooped, and brooking no nonsense.

My recovery was reasonably rapid, in that I was on the treadmill and a mild weight regimen within a few weeks, and by June I was able to walk 5 miles and work out for 30 minutes on weight machines with no real discomfort.  My brain, gut and upper body felt post-surgery effects longer, which I will discuss later.

By all the evidence, I had recovered.  Constrictive Heart Failure, unlike it's more prevalent relative Congestive Heart Failure, can be cured by the periocardectomy procedure I received.  So, at the age of 64, I was reasonably healthy after a couple years of suffering.  I had taken my retirement after surgery, expecting a much worse outcome.  So I had some free time and a lot of adjustment to make to the new life.

A year later, in June of 2013, I went back down to see Timimi for an annual review of my progress. As we were driving down, I joked to Sara that I would get a full green light on my heart but they would tell me I had Leukemia.  Joking. Everything looked good.  Except Timimi noticed an elevated white blood cell count.  It had been persistent, since surgery.  No one had noticed it, apparently.  As we left, he had me get a blood draw which he was going to have examined by the hematologist for his advice and opinion.

Sailing home up Highway 52 on a bright sunny summer day I was exhiliarated by my good health news.  The cell phone rang.  It was Timiimi.  There was an urgency in his voice.  He kept cutting in and out as the cell phone coverage was spotty.  All I heard was "leukemia."  My heart raced.  Sara heard it too, on speakerphone.  Then the phone went dead and we had to get all the way back home to call and confirm what we had heard.

Timimi had already made arrangements for me to meet with the best blood cancer specialist he knew at Mayo.  Dr. Letendre was a 40 year veteran in the field.  He explained that the kind of Leukemia I had was rare, and often stayed in the background for long periods of time.  I thought, at the time, that he said there was no successful treatment for it.  He did say there was no cure.

My blood was sent out for more extensive testing which involved genetic sequencing.  That narrowed down the kind of Leukemia I was diagnosed with.

Let me step out of the story and say a few things.

I agree with Agus.  I don't "have" cancer, and cancer doesn't have me.  Instead, there is a process going on which can be measured in my body functions, which indicate that a natural tendency to restore balance is disrupted.  This disruption has been occurring since, at least, 2012.  It presents itself as a continuous increase in the number of white blood cells in my blood.  Because of that, it is called a Leukemia.  Because it involves a derangement of the mechanism that produces lymphocytes, which fight virus invaders, and because it isn't going away, it is called Chronic Lymphocytic Leukemia.  CLL.

To me, what we call Cancer is an existential crisis of the self which presents, at the somatic, or body, level as unchecked tissue generation at the expense of the coherence, integrity, and balance of the other body processes.  In the language of existentialism, it is an occurrence of the Other within the boundaries of the Self.  This is an important definition to me, as a foundation of much of my thinking about my condition, and I will refer back to it many times in the future.

Back to the story.

When I saw LeTendre in 2013, my White Cell count was around 20 thousand.  Note that is a number without context.  If you have Leukemia, it becomes one of those magic numbers, like your SAT scores, which seem to acquire disproportionate importance in life.

I was depressed and angry, of course.  We are all cliches when it comes to devastating news, and our cultural development over the last century seems to have perfected the delivery of news about our health involving "cancer" as among the worst things possible to hear.  But I was also challenged.  Much of my career had been spent seeing things differently, finding different angles from which to glimpse sense and meaning from the bits of life going by us.  When I learned of my CLL I had the cliched reaction, the learned sense of violation, defeat, loss.  But a part of me also felt I had been given a challenge.  A very particular, life-or-death challenge, to be sure.

But a challenge.

In January of this year, 2016, I felt a pain in the swollen lymph node under my tongue, and went to my primary physician, Dr. Magda Bushara with the Parke Nicollet Clinic.  Letendre had retired, and I had been assigned a new hematologist at Mayo, Dr. Sameer Parikh.  Dr. Bushara contacted Dr. Parikh, who set things in motion to see me as soon as possible.  We saw him a week ago last Friday, and my white cell count was over 90 thousand, my platelets and hemoglobin were below normal, my spleen was enlarged to almost twice its normal size and lymph glands around my torso and in my neck were 50 to 100 percent enlarged.

It was showtime.

So far, I had been in the watchful state.  It is peculiar to CLL.  In most diagnoses of cancer, treatment is advised and begun immediately.  With CLL, it is delayed.  There is a chance that the elevated white count will plateau, or rise very gradually, for years, while the lymph nodes, spleen, platelets and hemoglobin remain within acceptable parameters.

It is worth noting that thw Watch snd Wait protocol seems to have been devised in response to one clinical trial performed in 1998. The trial compared survival rates between early stage patients with no treatment and similar stage patients with one kind of chemotherapy. It was concluded that those without treatment actually lived longer than those who received it. I and at leadt one other writer find it odd that this protocol is still in effect despite almost 20 years' advance in the science. 

For some reason, my system has decided to exceed acceptable ranges in several areas.  Pending further testing of my bone marrow, I will be classified as at Stage 3 or 4 in this condition.  It requires treatment. What treatment? What are the pros and cons?

I didn't know that treatment was even available.

Parikh seemed nonplussed to learn this.  He had assumed, taking me on from another very experienced hematologist, that I would have been educated as to the nature and implications of my disease.  I had been under his care for a year. He had the test results. I had only met with him the previous February, when he had informed me that he wanted "to get to know me and get to know my disease" but wouldn't be available all the time because he might be at conferences. 

Thus to July when we meet with his Physician's Assisstant. My White Blood Count was over 60,000 then and trending up. The trend had reversed in March briefly when it dipped from above 50,000 to around 45,000, but the P.A. Dismissed that data "because we only use tests we take ourselves" and the test had been conducted at my home clinic. 

This hit me hard at the time. The Parke Nicollet results were obtained after I had been working out daily and eating a Sparan diet in an effort to manage Type II diabetes without drugs. 

What hope I had of influencing the course of this disease through diet and exercise was flattened by that remark. I note this because on reflection it was an opportunity point in my education that was missed entirely. 

Parikh reiterated the complete futility of diet, exercise, and healthy lifestyle in influencing the progression of CLL at our January meeting this year. To be fair, he said that he believed in God, and he prayed that someday these lifestyle choices could be proven effective, but there was no research to support such claims.

Due to some miscommunication in the first stage of the disease, I had heard, and carried with me, that treatment was simply a palliative given to people in the extreme stages of the disease to ease some symptoms at the end of life.  I didn't think, or understand, that chemotherapy, radiation, bone marrow transplants, and other treatments typical of Leukemia were available at earlier stages, and some patients would in fact go into remission.

It took a while to sort things out, sort of.  Parikh and I got to know some things about each other you usually don't discover until you have known people for years.  We pushed each other's boundaries pretty quickly, and came out of that meeting with a kind of wary enthusiasm to pursue options.

But it was falling off a cliff, both in learning of the severity of the disease progress, and in reversing my embedded notions of prospects for treatment, which included chemotherapy.

In the meantime I am waiting for some updated genetic testing of my blood, and on Feb 29, Leap Year Day, I am going in for a biopsy of my bone marrow to determine to what extent the cancer has taken up residence there, in the matrix of life itself.  Then I will meet face to face with Parikh and begin the difficult and important discussion of what my real options are.

I am doing my homework. I have created a spreadsheet to compare treatments within the parameters of my specific pathology. I am collecting expert advice theough sources provided by Parikh. He warned me about the internet. I assurred him my career in professional communications prepared me for assessing the quality of information sources.

In the meantime, I put my efforts into reaffirming my life with Sara, my wife, and reestablishing my friendships with my sons.  I carry a big old film camera around in search of views of nature that inspire peace, and awe at the harmonies of light and form that exist around us.  I look for new glimpses of old truths.  I pull at the threads of eternity and see what unravels.

I get on with it.