Cancer

An Open Letter To My Oncologist

Patient or Person In reality, this is directed to any of my health care providers, not just my oncologist. Here I attempt to differentiate my interaction preferences from what seems to be a larger group of patients. I believe that all medical practitioners inherently know they must treat two entities within each of their customers. Those entities are, the patient and the person. I imagine it can be a demanding task for a doctor or nurse to determine which entity is prevalent with their customer in a medical relationship. Dealing with the "patient" is much easier than dealing with the "person". The patient is characterized by charts, test results, procedures and prescribed medications. Some customers thrive on all of these things and modify their persona and presentation to the outside world accordingly. Some even wear their numbers, good or bad, as a badge of honor. It can become their whole world. I am not, nor will ever be a patient. First and foremost I am a person. This perception changes, significantly, my interaction with any health care professional, along with my needs from that person. In some cases, doctors use "pep talks", "inspirational material" and statistics to bridge the patient-person gap. In my little world, I view such things with suspicion and distrust. I need candor and honestly, without omission. I care little to hear what might be. My interest is to know what is, right now. I recognize and accept these things may change as a result of various external inputs, procedures and programs. Over the past few months, I have heard statements concerning test results. In one instance I heard that CEA markers were not terribly important, but that the CT scans were the definitive indicator of progress. That was after a CEA test did not show as much improvement as had been forecast and expected. Ironically, the roles of importance between the CEA and CT scan reversed a few weeks later, when the CT scan showed virtually no change at all. Today I hear that we will stop the CT scans for a while, to rely solely upon the CEA marker. To me this is absurd. I have been off chemo for many weeks. I can feel the internal changes from the tumors on my liver. What better information could there be to verify the chemo regimen, than to perform a CT now. If growth were to be noted, then one could surmise that the existing chemo program was indeed stabilizing the tumor growth. If no change was noted, then perhaps that may suggest a different course. Nevertheless, it would have been valuable information. Type A Personality Anyone who knows me, even briefly, will confirm that I am very much a Type A personality. On top of that, I am most definitely a self-admitted control freak. I think these two things put a strain on my view of my doctor-customer relationship. I think too, that I frustrate many doctors because of it. I see myself as the lead member of the problem solving team. I grant responsibility for my health issues to no one. For me then, this means I need data; raw data, not interpreted data. I will ask anyone on the team for help understanding material that is unfamiliar to me. If I need statistics, then there is a wealth available from hundreds of sources. Statistics from multiple sources are generally more useful than stats from one source. That gets back to my concern with "interpreted data". The Person A person is the projection to and interaction with the outside world. Internally, thoughts, experiences, emotions, ethics, integrity and personal beliefs make up the person. Each person decides just what the external world will see of internal these things. Having been off chemo for so long, permitted me to see the degree of its impact on me. The physical side effects are of little consequence. They can be assimilated, then integrated into body systems. Uncomfortable, yes; but workable. Not so with the alteration of mental systems caused by the chemo. People notice differences. Mental acuity suffers, greatly. Simple arithmetic or logic processes seem to get foggy. My jobs, and pleasures all require a high degree of mental agility. Until chemo rolled around, this was not a problem. Then mistakes, delays and poor judgement became noticeable. This was a huge source of frustration for me. I like to demand a lot from me and I was simply not measuring up. My interaction with people, co-workers, friends and family changed. I felt I was losing my ability to "listen and understand", to understand their real needs and then respond in such a way as to exceed those needs, rather than provide a "textbook" solution. As the chemo left my system, people noticed I was getting back to normal. If chemotherapy alters the person that is me, then I become nothing more than a patient. That is like being dead. Going Forward All my life I have deferred things I want for me, things I want to do with my family, in favor of career growth. Of course, the career growth enabled me to do many things that otherwise would not have been available. Yes, my family and I did benefit from those. I am not complaining. That was my choice. I still intend to do those things. The only obstacle in my path now is this thing called chemotherapy. While on chemo, I just can't get to do them. It is as though I am in some sort of abyss that has no exit. Here I am referring to a lifestyle, not a week trip here and there that can be worked into the chemo schedule. I need a daily lifestyle that accomodates these future plans. I need to work effectively, by my standards. If that ability is compromised, then I may as well not be here at all. It keeps my mind healthy and as a consequence, it improves my general physical well being. I need to spend time with my family and friends, not as a burden to be accommodated, but as a participating member of the group. I need to be able to eat, drink and enjoy activities just as I do when there are no chemo effects. Is that possible? I do not know. Will our new extended 3 or 4 week schedule mitigate the cumulative effects of the chemotherapy? I do not know. Will the new schedule obviate chemotherapy, by making it ineffective against the liver tumors and preventing further metastases? I do not know. I do need to know - SOON.

An Open Letter To My Oncologist

Patient or Person

In reality, this is directed to any of my health care providers, not just my oncologist. Here I attempt to differentiate my interaction preferences from what seems to be a larger group of patients. I believe that all medical practitioners inherently know they must treat two entities within each of their customers. Those entities are, the patient and the person. I imagine it can be a demanding task for a doctor or nurse to determine which entity is prevalent with their customer in a medical relationship. Dealing with the "patient" is much easier than dealing with the "person".

The patient is characterized by charts, test results, procedures and prescribed medications. Some customers thrive on all of these things and modify their persona and presentation to the outside world accordingly. Some even wear their numbers, good or bad, as a badge of honor. It can become their whole world.

I am not, nor will ever be a patient. First and foremost I am a person. This perception changes, significantly, my interaction with any health care professional, along with my needs from that person.

In some cases, doctors use "pep talks", "inspirational material" and statistics to bridge the patient-person gap. In my little world, I view such things with suspicion and distrust. I need candor and honestly, without omission. I care little to hear what might be. My interest is to know what is, right now. I recognize and accept these things may change as a result of various external inputs, procedures and programs.

Over the past few months, I have heard statements concerning test results. In one instance I heard that CEA markers were not terribly important, but that the CT scans were the definitive indicator of progress. That was after a CEA test did not show as much improvement as had been forecast and expected. Ironically, the roles of importance between the CEA and CT scan reversed a few weeks later, when the CT scan showed virtually no change at all. Today I hear that we will stop the CT scans for a while, to rely solely upon the CEA marker.

To me this is absurd. I have been off chemo for many weeks. I can feel the internal changes from the tumors on my liver. What better information could there be to verify the chemo regimen, than to perform a CT now. If growth were to be noted, then one could surmise that the existing chemo program was indeed stabilizing the tumor growth. If no change was noted, then perhaps that may suggest a different course. Nevertheless, it would have been valuable information.

Type A Personality

Anyone who knows me, even briefly, will confirm that I am very much a Type A personality. On top of that, I am most definitely a self-admitted control freak. I think these two things put a strain on my view of my doctor-customer relationship. I think too, that I frustrate many doctors because of it.

I see myself as the lead member of the problem solving team. I grant responsibility for my health issues to no one. For me then, this means I need data; raw data, not interpreted data. I will ask anyone on the team for help understanding material that is unfamiliar to me. If I need statistics, then there is a wealth available from hundreds of sources. Statistics from multiple sources are generally more useful than stats from one source. That gets back to my concern with "interpreted data".

The Person

A person is the projection to and interaction with the outside world. Internally, thoughts, experiences, emotions, ethics, integrity and personal beliefs make up the person. Each person decides just what the external world will see of internal these things.

Having been off chemo for so long, permitted me to see the degree of its impact on me. The physical side effects are of little consequence. They can be assimilated, then integrated into body systems. Uncomfortable, yes; but workable.

Not so with the alteration of mental systems caused by the chemo. People notice differences. Mental acuity suffers, greatly. Simple arithmetic or logic processes seem to get foggy. My jobs, and pleasures all require a high degree of mental agility. Until chemo rolled around, this was not a problem. Then mistakes, delays and poor judgement became noticeable. This was a huge source of frustration for me. I like to demand a lot from me and I was simply not measuring up.

My interaction with people, co-workers, friends and family changed. I felt I was losing my ability to "listen and understand", to understand their real needs and then respond in such a way as to exceed those needs, rather than provide a "textbook" solution. As the chemo left my system, people noticed I was getting back to normal.

If chemotherapy alters the person that is me, then I become nothing more than a patient. That is like being dead.

Going Forward

All my life I have deferred things I want for me, things I want to do with my family, in favor of career growth. Of course, the career growth enabled me to do many things that otherwise would not have been available. Yes, my family and I did benefit from those. I am not complaining. That was my choice.

I still intend to do those things. The only obstacle in my path now is this thing called chemotherapy. While on chemo, I just can't get to do them. It is as though I am in some sort of abyss that has no exit.

Here I am referring to a lifestyle, not a week trip here and there that can be worked into the chemo schedule. I need a daily lifestyle that accomodates these future plans. I need to work effectively, by my standards. If that ability is compromised, then I may as well not be here at all. It keeps my mind healthy and as a consequence, it improves my general physical well being.

I need to spend time with my family and friends, not as a burden to be accommodated, but as a participating member of the group.

I need to be able to eat, drink and enjoy activities just as I do when there are no chemo effects. Is that possible? I do not know. Will our new extended 3 or 4 week schedule mitigate the cumulative effects of the chemotherapy? I do not know. Will the new schedule obviate chemotherapy, by making it ineffective against the liver tumors and preventing further metastases? I do not know.

I do need to know - SOON.

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