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.

Watching while reading the river Styx

Update on matters concerning cancer and its treatment.

Cancer, the unwanted visitor, showed up for me last August. By September, when I started being poked and prodded as a treatment plan was worked out, I had started this blog, "Reading the River Styx" as a way of reflecting on what was happening to me and around me. If you have read this far it is because you know I have been doing this.

The thought was (following the suggestion of the Greeks) that we all sit by the river across which we travel to the place of the dead and we read the signs in the river and in our lives that have to do with this uncharted trip. And, of course, with the diagnosis of cancer of the tongue, came the question, "is this the signal that the final trip is underway?" 

Well, apparently not. On Monday, March 13th, I got the results of the PET and CT Scans taken on Friday the 10th.  The PET Scan came back negative - no signs of any cancer anywhere. The CT Scan report contained a cautionary note, namely that one of the lymph nodes in which there were cancer cells is still somewhat enlarged. 

The medical team at Dana Farber recommend either close monitoring (watching) or surgery to remove the lymph node. Either way, the basic good news is that nothing "lit up" with the PET Scan radioactive markers and that the CT Scan does not show any growth in the lymph node. The strong probability is that the lymph node has been radiated completely and consists of dead tissue with no cancer. But the cautionary note is there, since other nodes did reduce in size.

So, I will see the surgeon in two weeks an she and I will explore the options and unless she has a convincing argument for immediate action we will watch for six weeks and do a further CT Scan and see if the node has shrunk. If it is stable or reduced in size we will probably just continue to watch, if not we will operate. Either way the medical team is very confident that "that will be that." Cancer gone.

The news then is very good. There is high confidence that this particular cancer is not the sign of the beginning of the last trip across the river Styx.

And yet things are changed. I am now numbered among cancer survivors, meaning a survivor day by day while living with a new reality. The visitor could return. And most certainly I now know that some visitor (cancer or some other death dealing thing) will come and ask for me to be companion on the trip out onto the river of death and to the far shore.  I now look for members of this club, people who know the near presence of the visitor who will one day come. Perhaps not as cancer, but in some other guise. We have lots to talk about.

And we laugh, and tell jokes: One of the jokes in Cancer land is this: The doctors were glad to report that the cancer had been beaten back and the patient was "clear." Their closing advice? "Be careful in crossing the street. It's deadly out there." We know something will visit us at the end.

Meanwhile: I'm still in recovery from the "aggressive" treatment plan - radiation and chemotherapy together. Taste is returning, as is swallowing. I still get tired rather quickly. I have very dry mouth. I still augment regular foods with some protein drinks. I've got some residual problems from the radiation: fragile teeth, lymphedmia, lack of saliva. But the over all report is things are on the mend.

People who have gone through this stuff report out that the old self  (Self 1.0) is replaced by a new and different self (Self 2.0). Things will not be the same.

Unfortunately there is no guarantee that self 2.0 is an improvement, much less the hoped for self who is born again. Spiritual wholeness and / or perfection is not an expected outcome of sitting by the river Styx and reading the waters. (Sigh)

Which leads, of course, to the observation that all this stuff is about salvation, but is not itself salvation. There is no salvation by way of suffering, with or without grumbling, nor by escaping death one more time by running as fast as possible.

It turns out salvation involves loving God and particularly God present in the stranger, the visitor, and even the unwelcome ones. In the end the death bringing visitor belongs also to life abundant.

I know this friends, because in all the difficulties, traumas and fears of these pasts months I have been washed in the loving-kindness of so many of you who have written words of encouragement. And I know this because in a wonderfully simple way I continue to live within God's love known in the presence of friend Jesus, who is the welcomed visitor and a sign of life even in the midst of death.

More later.

M

Women Marching

(I am somewhat indisposed, recovering from radiation and chemotherapy treatments, and when women marched in Washington and throughout the country and world I could only watch on C-Span. But in the course of that day I became aware of that same woman power present in Washington also present in my somewhat isolated life. So I wrote this, a poem reflecting on woman power as experienced by someone who has been loved by women who could otherwise have been occupied.  It's not very good, it is self serving in its own ego way (but ain't that the way of poems), and it speaks only to the power of love. Still, as Che Guevara suggested,

“At the risk of seeming ridiculous, let me say that the true revolutionary is guided by a great feeling of love. It is impossible to think of a genuine revolutionary lacking this quality.” 

So, to the end that the Women's March was guided by great feelings of love, here is the poem.)

WOMEN marching

Thousands on thousands:

The power of WOMEN marching

Is real,

As real as it gets.

The power of WOMEN marching

Is no surprise to me,

For I have seen WOMEN

Singularly engaged in witness,

Protest and support,

Seen WOMEN marching

in times of small daily strife,

seen WOMEN marching

in the hard times of life.

I am close to WOMEN,

WOMEN marching in my life.

I know whereof I speak.

EVIDENCE

Here:

SHE has marched for years,

And I with her.

SHE stood in silence against the war

And I with her.

SHE sits by my bedside in quiet

While I am visited by demons.

SHE marches through my pity

And my fears,

SHE brings redemption and release.

There:

SHE has gotten old,

As have I.

SHE writes from Maryland

To tell me that love is still there

And real.

SHE reaches into our past.

SHE remembers us, younger,

Sitting in the sand.

SHE and I shared magic smoke,

SHE remembers my swearing

there were tanks coming over

the waves and dunes.

SHE laughs now,

Marching through

Our little passions.

SHE carries a flag

Of love and laughter.

How can I not be young again,

Marching with her?

Everywhere:

SHE is my alter ego,

My light in darkness,

SHE marches tonight

Through my loneness and fear.

I texted her to phone,

I needed her voice.

We spoke.

SHE wrote later

“The weird days will pass

and soon they will be

just far far away memories!

So far that you could swear

they are not yours.”

SHE marched, this daughter mine,

Into my heart

To stay.

CONCLUSION

So I know:

There are strong WOMEN marching,

In the thousands on Washington’s fields,

And in my life, on my streets,

And the power of those WOMEN

Is as real as it gets.

The power of these WOMEN marching

Surprises only those

Who have refused to get close

To WOMEN,

Who tremble only in fear

At the actions of WOMEN

Trampling out the vintage

Where the grapes of wrath are stored.

For the rest of us,

Close to this blinding

WOMAN force,

Who have received grace on grace,

And sometimes great correctives,

Of equal WOMAN force,

We call out in solidarity

And thanksgiving,

March on! March on!

Returing from the Dark Side of the Moon.

Dear Friends: For those still praying for, thinking of, or standing by, a kind of report of things as I am on the way to recovery from the treatment.

I last wrote a “status report” on November 29^th. My sense then was that I was going “behind the moon” meaning that communications would become more and more difficult as the treatment and its effects began to overwhelm my ability to do much more than make it from day to day. 

I was about right, although I had no sense of how tough it was going to be.  For all intents and purposes I have been absent as a person from about the first week of December until the first week of January. The cumulative effect of the radiation and chemo treatments crested about a week after the end of treatment (December 19). I ended up in hospital from December 18 to 22, with a salt deficiency and related miseries.

Christmas was a kind of marker that things were beginning to turn slightly better. Being with family and back at my Boston home (Matt and Kellee’s) helped a lot. But there was no food by mouth, no taste, an inability to speak much, and strange dreams.  The dreams were an odd addition to the effects.

I tend to dream with some story-line, with a kind of beginning and end, and certainly with a sense of difference between begin awake and asleep. But for a while I was drifting in and out of a dream state and waking state without much changes between one and the other, and the dreams themselves were of bleak dry places and pointless wonderings. I became quite worried (when I was fully awake) that I was slipping into another world.

All of that broke one night when after dreaming this pointless dream yet again I woke up with a start and thought, “Oh, that was a dream.” And the two were separated again.  I have not been back to that fearful bleak world again.

So now I am in recovery. The doctors say that the process varies from person to person, but it is a two to three month process, mirroring the increasing effects of the treatment program itself. So at first there was not much to report, but now as the weeks go by (it is January 15) things are looking up.  I am eating again, although most of the taste has not returned. I’m able to concentrate more.  I can talk for more than a moment or two.

Most importantly Kathryn has come to take me back home to Delaware.

The healing goes on.

In the meantime, of course the healing from the treatment is different from the healing if the cure takes hold and the cancer is gone.  The hopes that I will once again be able to taste, swallow, speak, eat normally, are all being met more and more each day. But what about the hope that the cancer itself is effectively gone?  Well, there won’t be a first read on that for another two months, and if clean then regular readings over the next years. If the readings come back with cancer still present, then we work on next steps. Hope for recovery from the treatment is one thing. Hope for the end of this cancer is another.

So we move from hope to hope, from living in this moment where a good moment is drinking a smoothie with chunks of fruit, to living in the next where the good moment is dealing with the challenges of that moment as wellA 76, I suspect life will consist more often than not, of moments of “dealing with” with some grace and joy.  I can do this.

Again I am so aware of how much “dealing with” moments are effected by the love and care you have all had for me.  The Rector of all Lewes got members of the congregation to write postcards, so each day fifteen to twenty cards arrive, and after a while they become a tidal wave of mutterings of love. I have received wonderful letters and emails from friends. In particular, I have been touched and energized by notes from people who I encouraged along the way in exploring life and ministry, who have “reported in”.  When I’m down and out, these notes make me hope that perhaps something I did was of value. And value, the mutterings of love, and the care along the way make all the difference.

Barring setbacks or other surprises I’ll probably report next in a couple of weeks. But for now my thanks again for all your care, support and love.

As I reported last time:

“There, there,” she said.

“After a while,

On the dark side of the moon,

The Earth rises,

And you get to go home.”

By way of the dark side of the moon

Dear wonderful friends, who are putting up with notices from me in radiation and chemo land. On the one hand things are going well, in that the treatments haven’t killed me, but are apparently stomping out the cancer cells. Over 35 radiation doses I will receive 70 Grey of radiation, which is at the high end of what seems to be given. The chemo doses are once a week and seem less onerous. But the combination is something to behold… I have to eat through a tube in my stomach. I can still swallow but it hurts some, and my mouth feels raw and irritated. And I am weak, and getting weaker.  I have 16 treatments to go. Matters will get more difficult as time goes on and then begins a period of recovery. Hopefully by late January I’ll be more or less in decent shape. 

We had hoped to have Christmas in Delaware, but it seems that is not an option, so Kellee and Matthew have welcomed us to stay in Boston for Christmas. The Family will gather and the frail old man (me) will be, as always, surrounded by love and attention, provided I mind my manners.

So it seems to me I’m in the position of the space capsule being sent out around the moon, just about the disappear from contact and not to be heard from much until I come out the other side from behind the moon.  You may not hear much from me in the next several weeks. It’s OK. Contact will be re-established (unless of course crushed by an asteroid or strange beast lurching towards Bethlehem, or other cosmic events). (I’ve been watching too much SiFi.)

I’m learning a lot about “just being here.” There is really nothing I can do to make this all go away, or even keep hope alive that it is all for the good, or whatever.  It just is.  Having given myself over to the “protocol” for this particular cancer treatment, I have to let go being pissed off, upset, sad, angry, blah blah blah, and just do it. It is not a time to be sorry for myself, or even for those I love who amazingly put up with me.  And while I pray a lot, my prayer are not for release, but for endurance. This is the race I have to run, and there it is.

Many of you write, “prayers ascending.” I love that… it reminds me of ancient wise people throwing incense into the fire and watching the smoke ascend. It’s a powerful image…. The prayers ascending to the place where the Creator and source of healing is.  But I have in recent years come to believe that what is more powerful is the smudge bundle of sage in which the incense is not made to ascend before it gently caresses each of us, causing us to be changed, in this case changed into instruments of our own healing.  So I say, “prayers caressing,” like the Creator Mother’s kiss when the child is fretful and doesn’t understand.

I am these days sometimes fretful and don’t understand.  Three months ago Kathryn and I were planning a Christmas gathering of family in Costa Rica to celebrate our 50^th year of marriage. This last week end the actual day arrived and I was in bed most of the day, and when up was present but not very sparky. The trip has been put off. Everything is different.  And yet everything is also just right:  There is a lot of love in this family, between Kathryn and me, among our friends. I have renewed old friendships, found some new. Kathryn and I have the great gift of many people and their love for us. It’s “prayers caressing” for sure.  And when these things happen the fretfulness and the not understanding seem to fade.

“There, there,” she said.

“After a while,

On the dark side of the moon,

The Earth rises,

And you get to go home.”

A Burning Patience

Pablo Neruda delivered a Nobel Lecture in 1971 on receiving the Prize for Literature. It is an amazing statement about poetry and life in community, and worth quoting from at length.

“I have often maintained that the best poet is the one who prepares our daily bread… The baker does majestic and unpretentious work of kneading the dough, consigning it to the oven, baking it in golden colors, and handing us our daily bread as a duty of fellowship. And if the poet succeeds in achieving this simple consciousness, this too will be transformed into an element in an immense activity, in a simple or complicated structure which constitutes the building of community, the changing of the conditions which surround humankind, the handing over of human products: bread, truth, wine, dreams. If poets join this never completed struggle to extend to the hands of each and all their part of the undertaking, effort and tenderness to the daily work of all people, then the poet must take part, the poet will take part, in the sweat, in the bread, in the wine, in the whole dream of humanity. Only in this indispensable way of being ordinary people shall we give back to poetry the mighty breadth which has been pared away from it little by little in every epoch, just as we ourselves have been whittled down in every epoch.”

I can imagine my friends Fleda, Devon and Tom kneading the dough of daily poetry-bread, building community thereby, and restoring the whole dream of humanity. I can, on a good day, imagine myself kneading such bread. But more I can imagine “the work of all people” contributing to the bread, truth, wine, dreams, of the whole community, and in that can imagine taking my part in the restoration of human community as priest, printmaker, poet, and struggler with all the normal foibles of life, including the cancer that now preoccupies my time.

This last week was difficult for me on many fronts:

We elected a President in that awkward sort of way, where we give our popular vote to a gang of electors who are in turn pledged (mostly) by states to vote for the statewide winner in the Presidential election. And after all the rationale of just why we do this and how we do this we end up with someone who has a majority of electors, never mind who won the popular vote. It is a strange way of doing things, but there it is. So we have a new president elect – Donald Trump – with a small majority of electors apparently to his side. He will, without question, be kneading bread of some sort or another in the coming days. Secretary Clinton with the popular majority will be looking elsewhere for how she will contribute to the “bread, truth, wine, dreams of the whole community.” But I am not easily confident that either will be able to nourish the whole dream of humanity very much, at least right now.

Leonard Cohen, whose poetry and song have been part of my life even before Pablo Neruda wrote his essay, died this week. “Suzanne takes me down…” to “Hallelujah…” to the wonderfully dark and twisted workings of his mind and soul have fed me as bread and wine for a new communion in apocalyptic times. Fortunately, there is so much, because he fed himself and us almost every day, and we can always return to his poetry for nourishment.

More locally and precisely, concerning my cancer treatment, the radiation treatments this week have begun to affect my sense of taste. At least for a while bread and wine will fail the test as sacraments of community. So truth and dreams will have to come in other ways. I am learning to eat not for pleasure, but of necessity. But what kind of community does that entail? Sure, “we do not live by bread alone, but by every Word.” But how is the word made tasty? So I am afraid I am losing a grip on community as I lose taste. And I am longing for new words and signs. (Sigh.)

And this last Thursday I had to have a feeding tube put in so that as the tastiness of bread disappears and it becomes more difficult to swallow, I can circumvent the whole thing, and find nutrient without even pretending to eat.

It was, in other words, a week in which I have not been feeling very nourished at all… not the bread of politics, or the bread of singers, not the taste of common food or even the commonality of eating seemed immediately available.

And yet there has been nourishment of human community, of love, of support, even as we all have come to grips with the great puzzlements of increasing impairments.

And then I remembered Neruda’s essay, Toward the Splendid City. I remembered that Neruda began the lecture by recounting a difficult journey across the Andes between Chile and Argentina. He was, as many of us are now, on the lam. He spoke of strange small rituals in the mountains, where he and his companions left markers, as had so many others, in small sacred spaces, and how he joined in a dance high in the night sky, and how very small things – a bit of bread and some wine – made for humanity in a torturous time in his life.

So I got a copy and read it again. And there, almost at the end, Neruda quotes a prophetic utterance from Rimbaud the visionary. “In the dawn, armed with a burning patience, we shall enter the splendid Cities.”

He says at the close, “I wish to say to the people of good will, to the workers, to the poets, that the whole future has been expressed in this line by Rimbaud: only with a burning patience can we enter in triumph the splendid City which will give light, justice, and dignity to all people.” (translation my own).

A BURNING PATIENCE

So I say to my friends it is indeed a time for burning patience. The necessities of bread, truth, wine and dreams are all there, they are our gifts to one another.

And they are sufficient.

One Step at a TIme.

One step at a time….  first day of treatment.

So Pogo steps out on the water, very tentatively, and his foot sinks in… and he smiles and shrugs and wades.  At the end of the movie the Da Vinci Code, the last living descendent of Jesus Christ puts her foot on the water of a pond, and it too sinks in… and she smiles and shrugs and steps back.  Maybe, she says, I can try that one about water into wine.

It turns out the miracle of walking on water is not given to many of us. Most of us have to wade or swim or step back for another day. And we don’t often think of simply wading or swimming or stepping back as miracle. But it is… the sign of that miracle is the shrug and smile.

The miracle of one step at a time is at hand… and I am a participant.  Yesterday was my first day of treatment… Radiation and Chemotherapy both. The rest of the week radiation only.

It went well. The mask when cold shrinks a bit and feels like it is choking. That passes, but I can be thankful that I don’t seem to have the panic some do with enclosed spaces. The Chemo session went well. The only residual effect seems to be that my body is so unused to additional chemical stuff (aside from rum) that it just feels strange. I suddenly have to take lots of pills in addition to the stuff pumped into me during chemo sessions.  Not bad, just strange.

But it is clear that it is all just one step at a time.

At least this time there was little reaction to the chemo. I came back to Matt and Kellee’s home, settled in and ate a good dinner while children came to the door for trick or treats.

The only initial effects are pretty subtle… I know the radiation did something…things are a bit different, but I can’t really describe why.  The chemo went fine but I know I’m full of strange stuff.

I didn’t walk on water today… but it was a step forward. Today I stepped in and waded.

That was just right.

Someone asked if Kathryn was here.. Yes and no.  Yes, Kathryn is always here whispering good words in my ear, but no, she is not here in the flesh, but in Lewes where we live. She will be coming up from time to time, but there is nothing much to do watching the one step at a time slow dance of this thing. Better she lead the faster stepped dance of life and work.  I miss her very much, but that is exactly what I should be doing…. At least that part of my step (the missing her) is a dance in which we both participate…the dance over distance of knowing that she, our friends, and the dogs are all part of a world where the dance is lively, and they part of mine, which is a slow drag, one step at a time sort of dance.

Day 1 is done. 34 treatments to go.