Eight months out and keeping an open heart

I'm writing from Boston, where surrounded by Boston family, I am waiting to talk to the oncology gang about the results of the CT scan taken Friday. I see the doctors on Monday.  

Its been eight months since the end of cancer treatments. I keep improving all the time from the effects of the radiation and chemotherapy and have been feeling better than I have in years.  

I am sorry to say that a good bit of that has to do with weighing about 55 pounds less than when I started and not drinking alcohol or smoking cigars at all. It pains me to think that these minimal virtues actually make a difference.  

Still, there are residual effects of the treatment. I have very little moisture in the mouth, have some troubles swallowing, still have to work on lymphedema in the neck area and have one small bit of jaw bone exposed where a spot of gum needs to heal over.  But all things considered, these bits and pieces of effect are of little concern.

The really big concern, of course, is the question of just how much the cancer has been slammed down. The reports so far have been consistently good - no sign of cancer. But there are some areas of continuing worry, notably a lymph node that has not reduced in size with treatment. So, as it is with many of us cancer people, it is a time of active waiting.

The waiting is active, in that I pay attention to physical issues in ways that I haven't in the past. But it is waiting. And waiting requires a level of patience that is sometimes hard to come by.

Underneath it all there is the disquieting reality that at 77 years old the future will begin more and more to include this active waiting, in which sitting by the river Styx will include anticipating the arrival of the ferry that will indeed take me across the river to the place of the dead. 

It is, interestingly, not a morbid waiting. 

Life is very full and I feel that there are years of creative and useful things to do still ahead. Most recently I have been working more and more with children in worship and that is opening out into new teaching and preaching possibilities. The printmaking work also progresses. I'm beginning a new interest in taking my work back to Haiti and the art school. And new poems are coming into this thick skull. Most importantly there are things to do and places to go with Kathryn. So waiting is a partial vocation, not the full calling of the moment.

Last month a physical ailment the product of stupidity, not cancer, hit me in the face. I was lifting a heavy box (about 35 pounds) from the back seat of the car and had to twist as I lifted in a awkward way. Within moments I knew I'd done something stupid. By the end of the day it was clear that I had somehow mangled the sciatic nerve on the left side of my butt and leg. So for the next few weeks I was hobbling around with a cane and in considerable pain. Three weeks of physical therapy and things are more or less back to normal.

I mention this in relation to the "cancer thing" because two emotional / psychological reactions came with the sciatica that were indeed related to the longer term issues of cancer treatment and recovery.  

First, while I was pretty well convinced that the sciatica was due to stupidity and the regular ailments of age, the fear arose that perhaps this was somehow due to issues with the cancer or recovery from the cancer. The fear was there and just wouldn't go away. 

I remember other cancer people telling me that this was an odd side effect of the struggle. Anything that comes along is suspect - it signals (in fear-land) a return of the cancer, or a residual effect of the treatment. So it took several weeks (and partial relief from the pain) not to associate this nerve thing with that cancer thing.

The second reaction was related to being an invalid again. I was quickly reduced to the sort of physical being I was at the worse of the treatment time - in pain, unable to walk without assistance, miserable, and feeling very weak. 

But it was oddly comforting to identify myself as an invalid. I was again a sick person, mostly known to myself and others as an object of concern, pity, compassion, and not as a subject - a person full of more complex yearnings, desires, hopes, visions of self.  While the physical discomfort was real, the psychological comfort of not having to be anything but a sick person was also there. It was part of the great "suck in" of illness - to become the ill person as a primary marker of existence. 

For other reasons (more interesting than illness and cancer and such) I have been re-reading "The Pedagogy of the Oppressed" by Paulo Freire, and I was struck by how much his analysis covers the problems of the sick as well as the poor. In particular I was struck by how easy it is to internalize the oppression by which society assigns those who are ill or disabled to a role defined by those illnesses. The self-identification, as an ill person, with the role of the invalid, makes it easier to reduce living to a form of waiting and at the same time makes it easier to participate in the oppression visited on the ill by the well, and more particularly by those who define wellness. 

An old friend and amazing liberation advocate, Ed Rodman, used to pray that we not become instruments of our own oppression. THAT was what I saw happening in my own small case. I was sliding into a vocation / vision of myself as that old guy with the cane and the aches and mutterings of the chronically ill person. I was becoming an instrument of my own oppression. 

Well, eight months out and still learning. Seventy-seven years old and still a child in the matters of the heart. 

This is a good thing. I'm crawling away from the grip of self-generated oppression. I'm assuming there's still lots to learn and new work and art and loving to be done. And I'm learning patience without either too much drama or too little reality.

Meanwhile, Monday comes and with it the report. More later.