Sunday, November 27, 2016

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 50th 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.”

Saturday, November 12, 2016

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).


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.

Tuesday, November 1, 2016

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.

Friday, October 21, 2016

Reading the Fine Print prior to the Voyage.

It’s been a week of waiting and preparation. Radiation and Chemotherapy will start October 31st, with a last dry run Friday the 28th.  It’s been a two week period of getting ready – a quick trip to Dana Farber in Boston to get a radiation mask made, time at home getting things together for the seven weeks away from home.

Friends ask about getting together before I go and it feels like some sort of farewell event, as if I am never coming back. And of course, given the chance to be anxious about what is indeed coming I wonder, “what do they know that I don’t?”  Is it farewell? So it has been couple of weeks of mild anxiety. How is this all going to go? Am I worthy of what is about to happen? How will I be in battle? All that stuff….

I remember Arjuna’s injunction to Krishna on the battlefield, “not farewell, but fare forward voyagers.”  It isn’t farewell, but fare forward.

While I have been imaging the upcoming cancer caper as a “walk” in a strange land or sometimes as a battlefield experience, the medical establishment has pushed me to also consider another image:

Last week a very helpful medical administrator in the Dana Farber system spelled out the “truth in lending” provisions of the contract for treatment. There were three columns of information: things most likely to happen, things that could happen, and things that once in a long while happen. It was similar to the TV ads for new medicines.  The disclaimers are tacked on to the miracle drug being touted and suddenly you think, “why on earth would I ever take that?”  You know, “use of Zstrain has been known to sometimes make you dizzy, occasionally make you act out your shadow self, and rarely has been known to turn you into a Zombie killer.” 

Well, as near as I remember, the truth in lending package that comes with radiation goes something like this: “radiation has been known to make it hard to swallow, occasionally it makes it impossible to do so, making it necessary to put in a temporary feeding tube, and rarely has turned your whole lower face to mush.”   This of course makes anxiety a near neighbor.

I’ve been trying to recast the truth in lending in more optimistic terms. In all likelihood I will have some discomfort and then rebound. I have some hope to be among the most fortunate and least traumatized. But the whisper is there… this could be a real mess. 

Last week at church, after communion I joined those who went to the side chapel for the laying on of hands for healing. When my turn came, I asked to be worthy of the days ahead. I was surprised by this request coming from my mouth, and have been thinking about it all week. I think what has made me anxious is my concern that I might not be up to the task. Certainly I have been concerned that I might not have sufficient courage for the time at hand. But beyond that my sense is that this particular journey is an opportunity to grow more deeply willing to be present with myself and more, to be less ego (self) centered and more centered on the great self, the being that is the all in all, of which we are all parts.  So the question is, will I be worthy of the battle to endure for some greater end than my own comfort or even my own life?

Then too, perhaps I’m a drama queen. Perhaps this is all just an ordinary walk in a very different part of town and I am just nervous. Maybe all this talk of farewell and fare forward is just talk. Perhaps I think too much. (Sigh.)

I do know this: the “truth in lending” list, the waiting, the little twinges that tell me the cancer is present and working its way, the wonder about if I can do this, are all a bit like the anxiety prior to a great struggle, a battle, or (using an image from my own world) a really tough exam.

The only solution for all this is for things to get underway. I am ready to do this. Now.  But it will take another week to get there.  Meanwhile I am blessed with Kathryn, Matthew and Kellee, Ema,  and the love of brothers, friends, communards and voices from the past and present… you know, the great cloud of witnesses. The Saints go marching in.

Friday, October 7, 2016

Bring Them On: Continuing report on cancer and life.

Bring them on! 

For family and friends who have asked, and those who have not asked.  (If you don’t want to get any more of these reflections, let me know.)

Update on dealing with the unwelcome visitor.  After very good experiences talking to both people at Tunnel Cancer Center in Lewes and Dana Farber Cancer Center in Boston, as well as with family and friends in Boston and here, and (as usual) in close conversation with Kathryn, who keeps me sane (sort of), I decided that I will pursue treatment at Dana Farber.

I’ve had a biopsy of the area on the back of the tongue and it confirms that the primary cancer is there, with spread into the lymph nodes in the neck. So treatment will be radiation and chemotherapy for seven weeks. The hope is this will smack the cancer down and out and that will be that.  Still, as we all know, it is one step at a time. The prognosis is pretty good.

Treatment will begin October 31 and run through the third week of December. So I will be home for Christmas. (Probably grumpy and tired, but home.)

It was a great relief to get the matter of where and when settled, but of course anxiety always finds a home in the details. Now that where is settled I am anxious to get started. Does it make a difference to start quickly? How quickly? And I am anxious because the doctors, like the drug ads on TV, are bound to tell us all the things that can go wrong, can be expected, might happen, etc, with the treatments. So I am anxious about the effects of the treatments and how I will react. How quickly relief turns to new anxieties!

I do indeed get the message: fear not. And on some level I don’t fear. But I am surprised how much the little anxieties gnaw at the greater confidence. The big confidence is the rock on which I am standing. That bigger confidence is about the goodness of creation, the love of Jesus, and the presence of peace in the spiritual love we have for one another.  I find the whole notion of the Trinity remarkably connected to the matter of healing and wholeness.  In the weeks ahead I hope to have the presence of mind and spirit to contemplate on the confidence that comes from binding myself to the strong name of the Trinity. 

So “fearing not” is possible, but it is made difficult by the small nagging sense that things are out of control. Which they apparently are.  The only thing that finally casts out fear is love, and I am blessed by a wide and wonderful community of love.

As things move forward I will need to rely upon that love more and more, for my hope is to fear not, knowing that God is with me in the love others and I have and share. All in all, given that I’d rather not be doing this, I feel amazingly blessed by friendships and by joy in living.

So, let the doctors and nurses work their will, and may they serve the greater Will, whose message is pretty clear… do not be anxious and fear not. I will try to obey.

More next week.

Sunday, September 25, 2016

Update Dealing #2, detecting the detectable.

First, thank you all for kind thoughts, prayers, and occasional oddities that made me laugh. You are wonderful! As you can see I've now blogged this "dealing with cancer" stuff, so those wanting updates can find them here.

Now, to the update.

The detective work is almost over. I have been twice now to the Dana Farber Cancer Institute in Boston (about two buildings from where Matthew has his labs). Based on CAT and PET scans done here in Lewes the cancer seems to be located in several lymph nodes in the neck and the primary site is near the base of the tongue. Friday (two days ago) a Dana Farber surgeon did a biopsy of the area to determine it as the primary site, which it now seems it is. It does not seem to have spread anywhere else.  At this point they are talking primarily about the option for chemotherapy and radiation.  But all that will become clear next Monday (October 3) when we meet with the DF team and hear their recommendation for action. Meanwhile I am seeing oncologists here in Lewes about the possibility of treatment here based on the orders from DF.  It would be wonderful if I could have the doses here under direction from the oncologist team at DF in Boston. If not it will be eight weeks in Boston.  We will see.

The whole family has been wonderful and supportive, particularly (of course) Kathryn, who is her calm and loving self.

I am mostly seeing this as a piece of work that needs to be done, but have already jumped the rails a couple of times. Feelings are sneaky.  Some observations:

(i)             It is real depressing to feel helpless. The fact that I can engage doctors who “know what to do” about the cancer makes it seem as if I’m not helpless. But they talk about what needs to be done (by them) and I feel like I am the receiver only, and not an agent. I really have to work at it to remind myself that I do have agency, that I must decide what course of action to take. Still, helplessness is a pervasive thing, and the downward spiral takes a few turns.

(ii)           Anne (the sainted mother) was a great model for dying. She was real clear that death was not the problem, dying was.  And of course I have known for a long time that the dominion of death is often in the details. But it is amazingly difficult not to get caught up in the notion that if I just did this or that I might avoid death altogether (which by the way is a terrible idea). So in the midst of the beginnings of this walk, dear friends, I am surprised how often I have to catch myself from falling for the oldest trick in the book – turning the fight to live into a fight not to die, from turning living into something less spiritually interesting, that is, simply not dying. So far I am succeeding, but it is nip and tuck.

(iii)          Kathryn has for years meditated, and I in my own chaotic way have walked a spiritual path that has been of great help, and I am always comforted by the possibilities of non-attachment as a way of living lightly with the passing away of all things, people, ideas, nations, selves. Years ago Jim Friedrich sent me a postcard of a stand of trees in the snow, with snow falling and wind, so that one side of the trees were covered, the other not. On it he wrote, “Shh…it comes, it goes.”  Seems right.

So there it is.  More next week. Hopefully then the full blown program of treatment and the beginnings of a path where we go “stamping out the vineyards where the grapes of wrath are stored.” 

Your continued thoughts are hoped for, as I will dream of you often.

Three Poems while viewing the currents on the River Styx

Three Poems while viewing the currents on the River Styx.

Part of dealing with this walk is times of depression, particularly the depression that mocks faith - not blind faith or faith in some safety net, but faith in walking at all.  So three poems from such a time this last week:

Te Deum:

Te deum,

Te diddly dumdedum,
La luna, la leche,
La lucha:

I feel like God’s fresh meat
Laid out on the table.

The moon struggles
And nothing is itself

Except the song
Of Praise the the midst
of sorrow,
Sung by small children
Skipping home
At dusk.

Here Gropes:

Here gropes the snarls
And wily grime
Around the slime

That wounded
dominions leave.

Slime that has no pity,
no good work,
nothing divine,

only a path
to the shadows
and lights out.

Death's dominion is just around the corner.

Everything I feel, now, 

becomes important.
Where before there were just complaints,
You know, mutterings of older life,
Now this ache, that scratch, a vague itch,
Even arousal, take on the portent
Of impending death.

It took fourteen seconds for me to lose it.
Gone the quiet grace of faith.

Then I was not the center of the universe,

Now I am.

Then there was confidence in the unfolding,
Now I am unfolding, and without confidence at all.
Then Death had no dominion.
Now Death has, perhaps, a new convert.

Mr. Death has pulled a fast one, yes?

Dealing with Cancer.

September 2: I have cancer. Don’t know where else, but at least in some lymph nodes in my neck. As they say, “the news is not good.” I found out yesterday afternoon.  Kathryn is with me and her presence is wonderfully calming.  I wish there were ways to write each of you personally, but there it is.

I’ll know more than I ever wanted to later, but for now it is enough to say that much of my attention turns to the unwelcome visitor and days ahead that are even less in my control than usual.  I’m a bit in reactive mode just now, but God willing will turn more proactive as possibilities for treatment emerge.

Cancer is not another name for death, but I am aware that cancer often deadens the life force. So my most proactive work right now is (i)  to pay attention to the work Kathryn and family and I,  and lots of health care people, have to do dealing with the cancer(s) and (ii) to pay attention to living creatively and with imagination. 

It also means that in this next period I will need to focus on these things and not others. So I will be resigning from a variety of civic and religious committees and stepping back a bit from the busyness of life.  But conversely I will hopefully step forward with at least some grace into those dangerous areas where body and spirit are tested.

So, I’m dealing. Kathryn’s dealing.

What I need from friends is your dealing too.  We will no doubt need help dealing with life not in control. I know I will need friendship and love. I will mostly need compassion.

What I don’t need is too many questions, too many assumptions, too many solutions. Dealing is not rescue. Dealing is not avoiding death (which is really bad theology.)  Dealing is a sacred walk. It is an example of the journey being the destination, which is about God NOW.

So…pray with me for a good walk, perhaps walking away from the unwelcome visitor, perhaps walking with it, but a good walk none the less, in which holiness and loving kindness is present. I’ll pray for you too. After all, we’re all dealing.