Update on my cancer and my life

Minnesota River before dawn. Photo by Jeff Beddow  ©2017

It is always darkest before the dawn, or before there is no light in the universe at all any more.

I am in my second year of treatment of my Chronic Leukocytic Lymphoma. My oncologist is Dr. Sameer Parikh of the Mayo Clinic in Rochester, MN.  My treatment seems to be causing side effects and I have added heart failure to my other probems.

Next Tuesday I will see Dr. Parikh and my cardiologist to figure out why I am short of breath and have experienced splitting headaches for a few weeks.

Today is the first day in over a month that I woke up with no tinnitus, no headache, no feeling of a low grade ear infection or pressure behind my eyes.  I worked in the garage for an hour and felt tired, but I wasn't panting or gasping for breath after climbing stairs, etc.

Perhaps I have had a spontaneous remission of whatever acute issues have forced me to cut my cancer meds back to 1 pill a day from 3.

In the meantime, outside of the fear and depression that attends downturns in one's wellbeing, I have had wonderful days with my wife and cat, celebrated my 70th birthday, continued to work on my Minnesota River photography project.

But I have to deal with the flatline that my life has tended toward.  The old saying was "all you need for a good life was "something to do, someone to love, and something to look forward to."

That saying weighs heavily on me.  I don't look forward to anything except more bad medical news.

My life is a succession of uncertainties leading to a certain grim end, according to modern science and medicine.  My treatment consists of a biologic, a pill tailored to unmask the proliferation of white blood cells in my blood and bone marrow. The cancer disguises the extra cells, and hides them from the macrophages that would eliminate them to make room for new cells.  Instead they pile up, like a snow drift, clogging passages, taking up space that new cells need to live in.  It is an incurable process.  My biologic seems to have kept the worst of the symptoms of the CLL under control, but now the medicine seems to be creating side effects that might prevent me from continuing the treatment. I also take a beta-blocker for my heart problems.

My heart is losing its capacity. It seems to be the case both at the metaphorical and physical level. I am at risk of a condition called Atrial Fibrillation, which I might be suffering and can lead to heart attacks.  I definitely have diminished circulation due to ventricular problems, which reduce the blood pumped through the lower left chamber of my heart to only 35% of full capacity...a certain diagnosis of heart failure.

I do have more than one person to love.  I have a wonderful granddaughter, although she lives in Japan and I can only enjoy her through the stream of photos her mother sends me on a regular basis.  I love my son and his wife.  I love my wife and my cat with limitless gratitude.

In many areas I am most grateful for the way my life has progressed.  I am writing and doing photography at a high level of quality.  My software development keeps me involved in cutting edge research.

So, the question is, what do you need to live a good life?  Do you really need something to look forward to?  It begs the question that perhaps the moments without anticipation are really the moments we are most fully present in our life, and I have plenty of them.

I might have it pretty good. What do you think?

Amazing Grace is not where you look for it.

I start back at the U of M on Monday.  It is 50 years since I dropped out in August of the Summer of Love to hitchhike to San Francisco.  I didn't wear flowers in my hair. I didn't return for my Junior year and didn't graduate with my class in June of 1969. Instead I worked night shift as a janitor in the Physics building at the U, and sat outside on the gabled stone window sill watching as my class went through the graduation ceremony on the green expanse of Mall.  I smoked a cigarette and discussed the irrational basis of all culture with a physicist from Delhi, India, who took a morning break from his equations to philosophize with me.

That morning he told me of the first time he left home, at the age of 15, to go to a boarding school.  He had to wait in dark, at a deserted rural crossroads, for a bus that would take him away from the warmth of his family and into the bleak heart of  his urban, westernized future.  In the twilight dawn, he looked up into a nearby tree and saw the luminous ghosts of all his ancestors, watching him to make sure he got on the bus and didn't run away.

And he was a mathematical physicist.  One of the most demanding disciplines in rigor of thought

The black-gowned Midwestern children looped past the dias as their names were called. I thought about the people I had met on the road over the past two years. I had hitchhiked through Monterrey on my quest of the Big Sur Experience, and encountered the last human actor hired by Disney to portray Lincoln, before the animatronics replaced him.  Imagine being so far ahead of the trends that you lose your cosplay presidency to an android in 1967!  1967 was Peak Hippie for our society.  By 1968 we had crested the wave of optimism and trust among the mobilized underclass, and we were crashing down on a beach littered with broken icons and assassinated leaders.

If you couldn't trust the Hell's fucking Angels to keep peace, love and understanding at a Rolling Stones concert, who could you trust?

We sensed but could not measure the great loss to our generation when  Idealism had given way to divergence and conflict.  Anger replaced the conviviality of smoking dope with strangers while waiting for the new age to fully bloom.  My feelings were a mix of sentimental regret and logical dismay.

I regretted not being gowned in black and ready to tackle family and career, but I regretted more that our society had precluded that fast track for anyone of conscience who could not ignore the massive injustice and brutal sanctions we imposed on Native Americans, Blacks, Vietnamese, South American democratic regimes...etc.

I was dismayed by the tangle of contradictions that saw naive kids fall under the influence of extremists as they sought to replace the authority of Moloch America with something more friendly, compassionate and fair.  The extremists had learned to disguise their wolf-like appetites for destruction with the woolly double-talk of  egotistical gurus, cowardly  revolutionaries, inarticulate poets--the flotsam and jetsam of 19th century ideas washed up on the rocky shores.

One of the big differences between being a 19 year old Sophomore and a 69 year old Junior in CLA is that I have been diagnosed with an incurable disease.  When I was 19 we joked that life was the incurable disease.  Today I joke that Leukemia is ... well, no joke actually.

If my cancer is killing me, who is killing me?

A typical paradox about cancer:

If my cancer destroys me, and destroys itself in the process, where am "I" in the process?  To most people this is annoying sophmoric bull session sophistry.  Bull sophistry.  But there is a legit question here.

I had to "get" cancer to appreciate the dilemma.  Further, I had to fail my first course of treatment, and be faced with choosing older, more damaging chemotherapies or forgoing treatment altogether.

But that is getting ahead of myself.  Let's go back to the original question: "where am I in the process (of dying of cancer) ?"

Since the cancer originates within "me" am I committing suicide?  Is the cancer committing suicide since it depends upon a host whose life it is ending?

Since the cancer is "caused" by impersonal processes of genetic mutation am I a "victim" of an impersonal fate?  In the middle ages, philosophy was dominated by the concept of agency - everything that happened was the result of divine or terrestrial purpose.  Nothing "just happened."  If you died, the nature of your death was a reflection of some pattern of good and evil in your life.  We have spent at least 400 years trying to put this idea to rest forever.  But the nature of biological disorder, i.e. Disease, is bringing this conundrum into the foreground again.

You can't get far talking to your oncologist at this level.  They are trained to see the cancer as a bad thing that is invading your good body, and if you are lucky they can oppose some good chemicals to the bad genetic mutation and save you from this bad thing.

Does it matter who is killing whom if you have cancer?

Well, yes, now it does to me.  If I ascribe agency to cancer, and accept there is a purpose to it, then its destructive nature indicts someone for some kind of negligence or willful badness.  If it is entirely random and accidental, then "fighting" it creates a moral axis opposing my will to live to the outcome, if not the intent, of the cancer.  But doesn't that invoke an kind of agency, again?  Can you fight something that has no agency?  Gravity has, as much as we know, no agency.  It has no purpose but it has process.  If I step off a cliff and fall to my death, gravity is not the agent in the process.  Gravity didn't kill me, but the deceleration sure did. I take pains to prevent my death by falling, but I am not characterizing gravity as an enemy.  Cancer seems to have the willfulness of an agent.  My oncologist has said that the b-cell mutations resulting in my uncontrolled leukemia can evolve quickly in response to changes in my treatment regimen.  That is as clear a description of agency as you can get these days.

Why does this matter?

I have to choose to "fight" the cancer to to "succumb" to it.  Which means I must accept its agency.  If it were a random process the chances of it going into remission on its own would be as good as the chances of it killing me.  Clearly it is not random.  If it were a directed process of indeterminate origin whose outcome is its own extinction but which kills me as a side-effect, is that a sign of agency?  Am I called out by my cancer to meet the challenge, to prove myself, to stand up to the enemy?

At this point you might be thinking to yourself "Geeze this guy is depressed and doesn't care if he lives or dies.  Or maybe he would welcome death."

Let me assure you I have much to live for, and a great fondness for life.  I am no looking for excuses to escape a life felt to be fruitless or worse.  If anything, I see myself more in the position of a judge considering the evidence against the defendant: cancer, and trying to come to a fair judgement concerning his status as an entity, and his culpability regarding the anticipated death for which he is responsible.

If I misjudge cancer, it could have fatal consequences for which I then become responseible, and as the agent, become responsible for my own death as far as my society is concerned. So, in effect, even as judge, I am mounting a defense for myself against my demise, which seems to be beyond my control, but isn't beyond my agency.  Is that a paradox, also?

The sun is shining on me and my CLL

Time for an update.

Just some random notes.

1.  My current status

• I had a biopsy of two neck lymph glands performed on Friday.  I should hear results this week.  The results might confirm that I have Richter's Transformation, a much more aggressive and diffiuclt version of CLL that requires separate treatment before the underlying CLL can be treated.
• I went to Ohio State University Medical Center two weeks ago to consult with Dr. John Byrd, an authority on ibrutinib, a promising biologic treatment that doesn't require chemotherapy. He became concerned that I had the Richter's Transformation, and ordered a PET scan.  The results of the PET scan indicated a need for a biopsy, but we couldn't stay in Columbus long enough for the biopsy to be performed there, so we had to schedule it through Dr. Parikh at Mayo.
• Prior to going to Ohio, I had contacted Dr. Byrd's office because the FDA hadn't approved ibrutinib for first-line treatment of CLL.  He arranged for me to see him and be advised about entering a clinical trial which would give me state of the art access.  I informed Dr. Parikh about this offer on the 4th of March, and he concurred with that action.
• On the 5th of March we found out that the FDA had approved ibrutinib for first-line treatment, which meant I would be eligible for standard treatment with Dr. Parikh without going to Ohio, but he encouraged me to go to Ohio anyway for a second opinion.  Dr. Parikh is apparently a specialist in Richter's Transform, but hadn't pursued a PET scan with me as I wasn't presenting a set of symptoms that almost always go along with a change from CLL to Richter's.

I am able to sleep pretty well, despite the operation which included a repair of an umbilical hernia which the surgeon considered a threat to any treatment plan indicated by the results of the biopsy.

Sara and I have spent money we don't have and exhausted our sense of well-being in pursuit of a diagnosis and treatment for the CLL.

I have a lot more to say about this process from a patient's point of view but I need to keep this note to a factual basis for now.

Thanks for your interest.

You might note that in the photo of a blue barn taken on our trip to Ohio, the sun in fact is not shining.

Cancer as a Wisdom School - an invitation.

When I found out I "had cancer" I wanted to know a lot of things.

The first thing I wanted to know was when I would die.

The next thing I wanted to know was what the hell was happening to me.

The next thing I wanted to know was what could I do about anything?

I don't have answers to any of these questions yet.  I do know what the doctor recommends, and what the experts say about my disease.  I know something about the specific nature of the disease as it presents itself in my own body at this time.  I know where to go next, and the choice I have to make about treatment will have to be made soon.

But when will I die?  What is happening to me? What can I do to make a difference?

These questions are like loose bits of yarn on a sweater.  When you pull on them, the whole sweater begins to unravel.

My doctors are excellent and I have good health coverage.  But how did I get cancer?  And what did I get, exactly?

Over the course of the last two years I have sorted out the fact that I can expect some wonderful help from the doctors and the other cancer patients, etc.  But many questions remain unanswered.

Because I am my own damn self, I will try to answer those questions, at least for myself.

If I can't answer "When will I die" I can at least understand the importance of death-in-life better, because it is in my face now with this condition.

There are different perspectives to the question "What is happening to me?"  The official science involving the biochemistry of the cellular pathology is complex and extensive.  Despite its depth and authority, it still leaves many questions unanswered.  "What do my habits of thought and behavior have to do with my Cancer?" is one example of a question many people would like to have answered.  The "official" position on this varies widely, as widely as the map of the U.S. or the map of the world for that matter.

And that leads us to "What can I do to make a difference?"  Answers that are offered range from "Change your whole idea of love and self" to "Simply submit to treatment and hope for the best."

So I woke up this morning and realized that I am in a new school.  It is the Wisdom School of Cancer.

A Wisdom School is esoteric, occulted, transient.  It does not grow like a university.  It appears and disappears from the world stage.It might only affect the lives of a few individuals and never be heard of again, or it might influence the course of empires and world religions.

. What they have in common is the need to address issues of human nature and possibility that are not addressed, or not addressed adequately, by the mainstream schools and movements of the time.

Typically these schools are called esoteric, in contrast to the exoteric, or public nature of universities. monastic schools, academies associated with military traditions, etc.  Esoteric means hidden.

Another word for hidden is Occult, which has acquired a secondary but influential meaning of supernatural practices outside of, and at times contrary to, Christian traditions.There is a hint here of the problematic nature of these schools.  When they have been too visible, they have been seen as threatening to the mainstream culture, and it has resulted in mayhem and even death for students and teachers in these schools.  The most famous example you have heard of is Socrates, who was the founder of a private school in Athens, Greece, around 300 B.C.  His student Plato wrote many of his teachings down, even though Socrates himself taught by discussion, not by writing.

I am not too interested in the Occult as magical practice, and I am not pursuing that kind of treatment or "cure" for cancer..  I do think there are many hidden aspects of our relationship to Cancer which can be examined outside of the dominant ideas about it, however.  These aspects can be explored through examining the conscious and unconscious metaphors we use in discussing Cancer, and thinking about it for outselves.

Cancer has a life-and-death aspect which puts many things into a clearer perspective.  But it also confuses many issues with its apparently unpredictable nature and unknown origin.  This ambiguity and grave consequence combine to force the "cancer patient" to make decisions and understand, or fail to understand, some of the most important things a person can know about existence itself.

As I share my path in life with Cancer, I am intrigued with the possibility of seeing it as a kind of school. A kind of wisdom school, which emerges in times of crisis of change for culture and humanity as a whole.  Each wisdom school has a specific form for its message, although several of the main themes of the schools are common to them all.

I want to explore this idea, because I have been fascinated with Wisdom Schools since I was an adolescent.  Now at the age of 68 I have never been officially enrolled in such a school, but I have studied various schools and lines of alternative thinking all this time.

Cancer has enrolled me in its school.  I choose to experience it as a process that results in wisdom, and I will explore that aspect of it here in the blog.

You can help me in this exploration by asking questions.  We have come full circle in our view of learning, and are back to where we started 2500 years ago or longer.  We learn as a process of an evolving relationship between two people with a common problem or desire who talk, experience, capture, and modify their view through time though the medium of their caring about each other and the challenge they face.

If you care about Cancer and what it means to you, and can't find all the answers spelled out in a website or brochure somewhere, then we care about the same thing.

If you are respectful of the lessons of history and curious about the undiminished possibilities life holds, even for someone with as great a challenge as Cancer, then I care about you and we can walk along this path together for a way.  Please join me. Let's walk.

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.