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.
Tuesday, March 14, 2017
Friday, January 27, 2017
(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,
So, to the end that the Women's March was guided by great feelings of love, here is the poem.)
“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.)
Thousands on thousands:
The power of WOMEN marching
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.
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.
SHE has gotten old,
As have I.
SHE writes from Maryland
To tell me that love is still
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,
Our little passions.
SHE carries a flag
Of love and laughter.
How can I not be young again,
Marching with her?
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.
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
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
Surprises only those
Who have refused to get close
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
Who have received grace on grace,
And sometimes great correctives,
Of equal WOMAN force,
We call out in solidarity
March on! March on!
Monday, January 16, 2017
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 29th. 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.”
Sunday, November 27, 2016
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
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.
Tuesday, November 1, 2016
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
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.