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?