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.