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.
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.
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.
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