Monday, March 28, 2016

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.

Friday, March 11, 2016

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.