Thursday, December 31, 2009

A Foot in Each World

Dear Family and Friends,

Who knows if it's time yet or not ? !

Things are getting deeper now because it's been happening every morning since Sunday, -- this feeling Francis has of being "torn between one reality and another, torn between letting go and eating." On Sunday he said it was "hard to take." On Tuesday he called it "a struggle," and yesterday he used the word "terrified," and "panic." He shared all this with Bill yesterday afternoon.

I've been witness to specific instances of Francis' equally strong pull to live: He told me Tuesday morning: "My own energy is pulling me toward living, if I can surface enough."
Then we had another feast Tuesday night in which he visibly reveled. For one thing, we ate special Christmas dinner leftovers. Secondly, I played one of our favorite CD's bought directly from Oud virtuoso, Alan Shavarsh Bardezhanian's Middle Eastern music at one of several concerts of his. We used it for part of the background music for Francis' unforgettable 75th birthday celebration in 2002. We had rented the whole of Bella Cuchina Restaurant on Congress St and had filled all the tables with special people representing all aspects of Francis' life, -- family, parish, priesthood, peace, yoga, dances of universal peace and just plain good friends.

And third, encouraged to reminisce by the nifty little recorder Dr. John Devlin (Francis' diabetic doctor) brought us on Sunday, and with the same background music entraining us into the glow of that special night when everyone in the room seemed caught up in a joy bigger than all of us, -- (Francis had given a little talk, Joe Brannigan had given a toast, and I had recited from memory Shakespeare's Sonnet 116, -- "Let me not to the marriage of true minds admit impediments" in his honor,) -- Francis and I talked on Tuesday night for almost two hours!

Then yesterday, when Francis took his lunch of barley mushroom soup, fish, and some delicious "Seriously Seedy & Nutty Wafers," (loaded with...pumpkin, sunflower & sesame seeds,) which Ann Lemire brought, he said, -- "This is all strengthening food, isn't it!"

In mid afternoon I asked him: "What keeps you wanting to life?" "The joy is holding me here," he said.

And that joy was blissfully visible on Francis' face when Lynn and Lee came and Rowan came for our family time. Francis was positively beaming!! Especially when 5 year old Rowan climbed onto the other side of his bed not to disturb the "pee bag." I have a photo of her hugging "pepere" that Lynn and Lee want (Haven't even uploaded it yet.)

So he has a will to live. But he's bound to reclining in bed, not even able to sit fully upright without pain, even with two sources of pain control. And the cancer hasn't shown signs of easing.

So he's got a foot, literally, in two worlds. In the Hospice booklet this sign of approaching death is called "Disorientation." Bill made an excellent point yesterday, -- that perhaps it should be called a "different orientation." When Hospice's Chaplain Jennifer Mancini called, this morning, she suggested -- "an inward focus." Francis said: "Yes, it would be."

Lynn told us at dinner time last night when she and Lee and Rowan came for our family time (when we also exchanged a few gifts) -- that she learned from a very recent article in the New York Times on palliative care that some of the panic experienced at end of life is likely chemically induced. I'm eager to see the article. It throws a new light on Francis' dilemma. If his battle is chemically induced should he take a drug for that anxiety? Even before we knew of the NYT article we thought of that. But the three of us concluded another drug might not be needed.

Especially since the great blessing of Bill's visit resulted in Francis' and my realizing we perhaps already have on hand, very readily, the "drug" that broke through the "wall" he once faced until Ken Hamilton of H.O.P.E. visited and asked Francis to sing his heart song. Francis had known immediately what it was. After 13 years of being steeped in the joy of that Aramaic Beatitude, -- that's the one, and the other Aramaic chants he loves too, and hymns.

So we decided to be more faithful to singing our prayers together as we have done only spontaneously. Before Francis' bedtime last night I lit the candle Abraham Sussman made and, because Francis' energy was low, he asked me to sing the hymn I had chosen for my mother's funeral which also strenghtens me. Bill and I sang it for Francis yesterday afternoon:

"I heard the voice of Jesus say, "Come unto me and rest.
Lay down thy weary head, lay down, thy head upon my breast."
I came to Jesus as I was, Weary and worn and sad.
I found in him a resting place, And he has made me glad.

I heard the voice of Jesus say "Behold I freely give
The living water, thirsty one, Stoop down and drink and live."
I came to Jesus and I drank Of that Life giving stream.
My thirst was quenched, my soul revived, And now I live in him."

I heard the voice of Jesus say, "I am this dark world's light,
Look unto me, thy morn shall rise,
And all thy day be bright."
I looked to Jesus, and I found in him my star, my sun,
And in that light of life I'll walk, Till trav'ling days be done."

Francis latched onto the last line of the first verse, -- about being made "glad:" "I found in him a resting place, And he has made me glad."

I prayed the sealing of his sleep with this prayer-song would help him face down any possible terror he might encounter again this morning.

When Jennifer called a while ago around 9:00 am Francis told me, with her listening through speaker phone, that "Today it's still there. I'm very weak this morning. My energy is pulling me away from eating.....There's no panic right now because you're right here in the flesh to talk to, -- the three of us. This fact gives me strength so I have more strength to keep going into the outer world."

At this point I asked Francis if he WANTS to "keep going into the outer world," and he said yes. However, just now, he asked me -- lunchtime -- if he should force himself to eat. I said no and reminded him of what his nurse Pam had said, -- that it should be a natural thing for him. It's possible part of his decision not to eat right now has to do with timing: The home health aid is due here at 1:00 for his bath, and he needs to rest. He also said, -- "Not now," implying he would eat later. But it's clear there's a progression here.

Though it's also significant that he agreed to Jennifer's suggestion that she call every morning at 9:00 to check on him so "the three of us" can be there for him.

Before his final tucking into bed last night I anointed Francis' forehead and ears with the healing oil given out to participants at "Shrine Sunday" (every August) in Canterbury, New Brunswick. The beautifully simple St. Francis of Assisi Shrine (St. Francis being his namesake) is built on land donated by Francis' great grandfather more than 80 years ago. Francis was born on that land, and several times over the years he drove alone to Canterbury NB for that communing with his Irish ancestors."

So I ask you dear family and friends, as I did when I wrote the very first of these updates on September 24, -- Please pray for Francis as he gradually increasingly approaches the other world.

Francis' sister sent him a prayer she uses every day. I told her it reminded me so much of the beautiful prayer my mother taught me as a child. I heard my mother praying it too in the late 90's when her sister (my Aunt Rachel) died. When she herself was dying I brought it up and she assured me she had been praying it:

I'll translate, but in French it's this:
Jesus, Marie, Joseph, je vous donne mon coeur, mon esprit, ma vie.
Jesus, Marie, Joseph, assistez-moi pendant ma derniere agonie.
Jesus, Marie, Joseph faites que je meures paisiblement dans votre sainte compagnie.

Jesus, Mary and Joseph, I give you my heart, my spirit, my life.
Jesus, Mary and Joseph, assist me during my last agony.
Jesus, Mary and Joseph, let me die peacefully in your holy company.

After maman died I read The Tibetan Book of Living and Dying and was gratified to see that maman had spontaneously gone through every one of those steps, using her own tradition, listed in that healing book.

When I told Jennifer this morning that even the company of good close friends tires him out (though family -- Lynn, Lee and Rowan -- does not) and that I'm going to be very protective of him now, she put it so well, -- "You're protecting his sacred space."

So I thank you ahead of time for your prayers! Lee gave me an important reminder last night, -- not to try to respond to each email. Know that I do read them all, and for now at least Francis hears your "Message to Francis" too, -- sometimes days later. But I will follow Lee's advice to free me for funeral preparations.

Francis has heard most of the details, and smiled at some of them, -- like letting people look at the VCRs of him following my instructions in doing one yoga pose within three minutes, live on TV. We had the privilege of doing that on Channel 13 once a month for 3 years. He was my star model yoga student there as well as in class.


Tuesday, December 29, 2009

Christmas weekend

Dear Family and Friends,

Much has happened in a few days. Francis wasn't feeling well on Christmas night so he slept. I learned the next day he'd been in pain during the night because of his earlier inability to urinate. Though his nurse offered him the relief of a "Foley catheter," Saturday morning, it wouldn't work because of his enlarged prostate. So he slept that off too until a "coude" catheter (with a curved tip to bypass the prostate) was put in successfully on Sunday morning .

Yet, even that Saturday, after a long nap, by suppertime he had rallied. So we reveled in an elegant Christmas feast. When I opened a bottle of wine of which Francis took only a sip (because he's on opiates,) his eyes lit up with joy, seeing mine. His joy at my joy touched me. He didn't express regret that he couldn't partake; he was simply happy to see me relaxing with him.

Meg Wolff's dinner was not off limits for him however! The festive tray with Christmas tree napkins her husband Tom had delivered earlier included: "Cranberry braised tempeh, oven roasted vegetables, rice & wild rice w/pecans, pasta with tofu and Broccoli steamed, seasoned with drops of rice vinegar, and apple/blueberry crisp desserts made with rice syrup. The corn bread was made with blue corn flour." With inspiring Christmas Carols from King's College, Cambridge England resounding as we ate, we basked in the glow of Christmas lights. It didn't matter a bit we were a day late.

The next morning, Sunday, Francis told me he found himself "going in and out of reality." He "felt torn," he said, "between one reality and another. It's hard to take," he added. I pulled out the Hospice booklet which lists the signs to be expected and read to him the short section on "Disorientation."

When he told me with a new earnestness I hadn't heard before that he needed someone to be with him in this transition, I called the Hospice office to see if the Chaplain was available. Learning she was not I remembered how moved Francis was when he had dictated a thank you to Bill Gregory (a retired UCC minister) for his "Message to Francis." He had told Bill how much he admired him, ever since we had taken his course at OLLI (senior college) on "Poetry of Soul." So when I suggested -- "What about Bill Gregory?" Francis immediately said "YES!"

I then -- just as immediately -- emailed Bill who called in less than an hour. A few hours later he arrived at our doorstep. Once the afternoon exchange with Bill was over, Francis asserted, -- "He's the right person!" So Francis has a soul mate now, someone to help him prepare for the transition. He is very happy about it. And I, once again, am in awe at the ways of Providence!

It was not just Bill's "Poetry of Soul" course that brought us together with him. Francis and I also shared with Bill and his wife Nancy the experience of standing weekly for peace with our signs at Monument Square through sunny and wintry days.

It was also Bill who invited Francis and me to be interviewed for the program about seniors on Portland Community Television called "The Second Act."

In fact during Francis' wake and after the funeral reception, we'll have that TV interview available for viewing in one of the rooms near the Sacred Heart/St. Dominic's downstairs Chapel.

I had planned in these updates, to share Bill's recent monthly column in the Portland Press Herald because its subject speaks directly to us at this time: "Embrace death as part of life cycle." It's a good time to share it now, so I've copied it below.
But first a brief PS:
After writing the above last night I checked Francis' blood sugar before going to bed, but decided to whisper a question too: "Would you like some organic tofu yogurt?" adding, -- "You've been asleep a long time." (I know that though he looks asleep he easily awakens to a whispered question.)
Francis did indeed want the yogurt, -- a total of three big tablespoons. While he kept each spoonful in his mouth, one at a time, to warm it up before swallowing, I was massaging his feet with a rich oil Lynn got us to help knit the dry skin, especially on his feet, ankles and shins. He loves a gentle scratching to loosen the dead skin and elasticizing the new skin underneath with more oil.
Francis thanked me for having awakened him. He said the yogurt made him feel stronger, and repeated a few times that yes, he was glad I had awakened him because "it's not time yet." I questioned his meaning and he agreed: "Torn between one reality and another," his being lured toward long sleeps is premature right now.
It's not time yet!

REFLECTIONS Embrace death as part of life cycle

BILL GREGORY December 5, 2009
REFLECTIONS is a column written by members of Maine's faith-based community.
I've been thinking about death. Not focused on it, really; more around the edges.
Fall always does that to me. Rolf Humphries has a poem called "Autumnal" that comes to my mind each year as the leaves fall:
"Face it – you must – and do not turn away
"From this bright day
"Face it, and doing so,
"Be wise enough to know
"It is Death you face, it is Death whose colors burn
"Gold, bronze, vermillion in the season's turn.
"In pomp and fine array
"Not only all that lives, but all that dies
"Is holy, having lived, and testifies
"To bravery in season, spirit, man.
"Face it. You must. You can."
In my seventh decade, I don't have much choice. Slowly but surely, my body is shedding its leaves. The obituary pages list the ages of those who died recently, and more and more of them are my age or younger.
I'm facing it. I'm going to die. I don't have to like it, particularly the process of dying, but it is a fact. So what to think about it?
I think death is OK. More than that, I think it is appropriate. It's appropriate for each of us to step aside in our turn, particularly so for those of us who have been blessed with long lives.
But the more I think about it, I don't think the issue is when we die but what we think about the fact of our dying.
For a long time, perhaps still, physicians have been dedicated to keeping their patients alive, seeming to opt for quantity of life over quality of life. Our litigious culture is part of the problem. But underneath, it has to do with a cultural attitude toward death. We are afraid of it.
I understand not wanting to die. After all, when all is said and done, life is sweet even if sometimes it serves up a sweet and sour entree, even sour and sour.
But life has its moments, and the moments that make it sweet are moments of natural beauty and moments of love, and the moments make it all worthwhile.
I think that there will be moments like these for us after death, but if I'm wrong, I think that the moments we had during our lifetimes were worth it all, nothing more needed.
I understand not wanting to die, but I have a harder time understanding the fear of dying. Death is part of life. Life and death are partners in this world, not opponents.
This is so, both environmentally and spiritually. As Ecclesiastes says in its third chapter, "For everything there is a season and a time for every matter under heaven: a time to be born and a time to die"
"Face it. You must. You can."
The fear of death must have something to do with the unknown, like the darkness in the closet or under the bed of my childhood.
I used to stand against the wall that my bed was next to, get a running start and jump as far as I could to escape whatever scary arms or tentacles might grab me from the dark under the frame. If that is our picture of death, I understand fearing it. But it isn't my picture of death.
Neither do I picture pearly gates and golden streets after death. I do picture love, eternal love, which means it's here now and will be beyond the limits of my mortality and definitions. It is this love that leads me to think about death in terms of ecology: the ecology of grace and the ecology of organics.
The ecology of grace has to do with the fact that things, you and I among them, get torn down over the course of time, but the refuse – or our experiences and our days – is the humus that nourishes and nurtures the growth of spirit, character and wisdom.
The ecology of grace teaches that we can trust – in my trade, we often use the word "believe" – that what appear to be ends are more transitions than conclusions.
With love in the mix, the transitions may not be easy, but they are graceful. This is so for us in the mystery of what is next in the adventure of our being and for our loved ones and friends who must cope with the loss of our bodies to hold and the sound of our voices.
The ecology of organics says that things must die to make room for things that follow. Death is natural, appropriate. There is a time for us each to step aside – and better for all if we can take death's hand as a partner in the dance of life rather run from it as I did from my childhood fears.
There isn't much, if any, joy in saying goodbye once and for all, but we can participate with more generosity and gratitude when we understand death is natural and, in its unique way, a gift to our loved ones and nature.
That is another way to look at our dying, as gift-giving – giving, among other things, the gifts of space and perspective.
We step aside, making room for our loved ones and others on this crowded earth, leaving our remains to nurture some tree or bush. Let's not be buried in time capsules. I vote for biodegradable urns or coffins.
Our parting also gives the gift of perspective. No one fully understands what they have learned from us or what beautiful people we were, in spite of it all, until we are dead. That is a gift to them.
I taught a course once that involved writing our own memorial service, eulogy and all. One member of the class liked what she wrote so much that she wanted to be there. So she announced to her family that she was having her funeral now, including her reading some of her favorite poems.
I'm sure it was fun and meaningful, but it wasn't really her funeral. Our very presence gets in the way of others seeing us clearly.
Death gives those who loved the departed clearer and kinder vision. There is sadness in it but also joy. She did give her family wonderful gifts, though; she showed them that she wasn't afraid to face her demise, thus lessening fear all around, and she invited a conversation blessed with the perspective of mortality.
I was born and grew up in California, but I choose to live in New England, and I plan to live in Maine from now on and die here.
One reason for that is the seasons. They teach me many things, and one of them, augmented by my Christian faith, is not to be afraid of change – in fact, to rejoice in it.
I'm feeling more and more that way about death.

Copyright © 2009 MaineToday Media, Inc

Saturday, December 26, 2009

Sharing our precious dialogue

Sharing our Precious Dialogue Suppertime, Christmas Eve, 6 -7:45 pm Dec 24, 2009

Dear Family and Friends,

I asked Francis if I could share with you this treasured conversation we had on Christmas Eve and he agreed.

Francis had slept ALL day on December 24 except to surface briefly for breakfast and lunch. At suppertime, he looked weaker I thought, observing the effort it took him even with my help to sit fully upright leaning on the hospital bed's 45 degree incline.

I sensed it was a special moment because of the way he looked at me. He seemed physically fragile, or somehow more spiritualized.

I noticed he was pausing before eating, and sure enough, on his own he started to sing "Havlan lachma..." It's the Aramaic for "Give us this day our daily bread" which we and those who chant the Lord's Prayer use as a grace before meals. I immediately joined in, so pleased he had initiated this meal prayer chant!

Then I was very surprised to hear him sing again! Why would he sing again? And it was not the words themselves of our favorite Beatitude, but its refrain that Dr Neil Douglas-Klotz the Aramaic scholar who created the chant added that he was singing: "Allaha, Allaha Allaha, Allaha, Allaha..." (And that goes on for 20 Allahas!)

Oh my God, I thought, swelling with joy to see and hear this! Then we launched together into the Beatitude proper: "Tubwayun layleyn..." with again its 20 "Allahas," I, the whole while doubly delighted at the living love for God in his heart. "Allaha" gave him the words to express it in song!

Then Francis told me he had had a dream, and how, in his dream, he had awakened in the morning to see his obituary in the paper.

"And I was glad!" he added.
"Why glad?" I asked.
"Glad it was over," he didn't hesitate to admit.
"Are you afraid?" I asked.
"At times."
"What comes up?" I probed.
"Not sure."
"The unknown?" I pressed."
"Oh, yeah!"

Then he recalled what I had told him the day before, -- that Jim Lovejoy had emailed saying he had put up a poster in his office reading, "Let go, let God."

"That is THE task," he said emphatically. "That quote helps me! I had never reflected on it seriously before. Everything is involved in that....So the dialogue we're having right now is helpful, helpful to me...Because the two of us know I'm in that process. Other people don't necessarily know. But you know, and by dialoguing you're helping me to bring it forth. "

"You can let go anytime," I volunteered. "Are you wanting to hang on?"

"I suppose, yes, in a way. I'm wanting to hang on wondering what's going to happen to you with finances."
"Do you realistically think I'm at risk?"
With tears in his eyes, -- "Yes and no. It's there. But it's good to talk about it."

Then I told him that his concern reminded me about my mother's asking before she died: "Who's going to take care of you when I'm gone?" I compared her worry, motivated by her unconditional love of me, to his: "What's at issue here is your love for me, and your instinct to protect me," I reasoned, "more than a justified fear."

"This is a very valuable dinner conversation we're having," he said with some kind of obvious relief. "Most people don't have this. A lot of people when they're dying, they don't have this. It's very helpful to me. It all came from your asking me about my fears. We don't need to go into specifics. It's just helpful we're talking about it. Because we've had this dialogue, it's worth it....It's valuable for me to be with you, to express my fear. It helps me to let go a little bit.....I'm not thinking in terms of anything immediate, tonight or tomorrow. I'm just expressing an example of that whole process of letting go...We're talking totally honestly, and it's very helpful to me."

"How helpful?"
"Its just the fact we had this dialogue. It's just a step in the process of my effort to let go, my effort to be free, just one step in letting go....Sure, there'll be other steps....It's very wonderful! But you take what's given to you. You take the insights, the little gifts along the way...."

He continued, -- " 'Let go, let God' sounds like a cliche. I had never thought about it before. But -- huh! " (and he made a face showing something very difficult.)

"Those things just surface," he continued.
"When do they surface?" I asked.

"During the night, some time today. (He "slept" all day!) Gradually they surface and make themselves known. It's just a matter of bubbling up. It would be strange if it didn't happen. We've been so open about this whole situation we're in, that presents itself in different insights, gradually,'d expect that....Like the guy said (He was referring to what Dr. Ken Hamilton who started H.O.P.E. had told Francis a few weeks ago -- ) 'You work on these things (meaning writing one's obituary and taking care of final preparations) and then you get on with your life.' Now we can get on with our lives.....Yeah!....Okay!"

"Do you feel a burden lifted?" I asked.
"Yeah, sure. Yeah!"

He took a deep breath and added - "What's the meal?"

Then Francis told me he had forgotten to tell me the whole of his dream, -- "In my dream, passing away was painless. I just slipped away in my sleep, and then said to myself 'Oh! That was nothing!'"

At this point I offered Francis one of Francesco Sanfilippo's soft ginger cookies. "Oh, wow! I just got the smell of them! Mmmmmm, (he said smiling) Tell Francesco that I swooned with delight....So Francesco gets top billing tonight!"

His eyes closed, he seemed to be sucking on the cookie.
I was watching him, noticing his jaws chewing the cookie. As he was savoring the cookie, I was savoring every precious moment of being in Francis' presence, the presence I had been partially deprived of since he had slept all day. I was savoring his presence, my whole attention held by him, watching him, aware how rich the silence was, and what depth was in this precious moment together.

His eyes were closed, and then he looked at me with a warm direct smile.

"I wonder about the consistency of these cookies," he added. "Which do I prefer? Francesco's soft one? Or Susan's crisp one? For me, for immediate sensation, it's the softer one. But for longer term, Susan's ginger cookie hangs more in your mouth. The consistency of hers has longevity in it, though the flavor of both of them isn't a great deal different."

Then, after I invited him to have a biscotti and offered him a bit of the goat cheese Dr. Ann Lemire had brought, both of which he reveled in, he said:

"I've been very well served,'s very enjoyable. We've had a very satisfying repast. Your presence was deeply drawn into my soul, and so I am very happy. Those things just come like a gift! The whole thing just pulled together. It made for the nourishment of my whole being. It came to us from God. It was so important for me, for that single step I needed to take: 'Let go, let God.' There are many steps, but I took a step in that direction now. I need to feel that very strongly, -- that feeling of letting go. It's a step in that direction."

"Is it comforting for you?" I asked.
"Does it take away your fear?"
"It's a beginning."
"It's a process, isn't it?"
"Yes. But I do understand your gratitude for my sharing it with you."

Then Francis lay back to rest before starting the bedtime ritual later, of brushing his teeth and letting me do the flossing, and of checking his blood sugar and massaging his feet and shins, (so dry from the meds) with oil, and tucking him in bed.

Francis' words were suffusing my heart, and in particular -- "Your presence was deeply drawn into my soul, and so I am very happy."

These words of his, fresh from his living experience, had a profound effect on me, drawing me into a silence that made everything in this life seem paltry by comparison. They marked the highest, deepest, fulfillment of our marriage so far, the greatest gift I have ever been given.

What more could I ever ask of our 41 year old relationship?


Thursday, December 24, 2009

A Christmas Eve like No Other

Dear Family and Friends,

I wasn't going to write tonight because the most precious dialogue I had with Francis at suppertime had drawn me so deeply within I wanted nothing else but just to sit with it. Which I did. Even the hum of his new air mattress' motor couldn't disturb the rich silence of his room.

Yet I'm writing now, since Francis' night ablutions a little while ago broke the spell anyway, and because I know our young cousin who called me is grieving. I want to reassure him that even though Francis slept ALL DAY except when he surfaced at mealtime, all is well.

Francis' need for more sleep or what looks like sleep, led me to wonder if his passing will come sooner rather than later. But after our "dialogue" as he kept calling it, I learned he only took "the first step" helped, as he repeatedly told me, by our dialogue itself.

Fully present to him, savoring, cherishing his full presence while I can, I didn't want to lose a single drop of it. Our intimate supper dialogue was not so much about our love as about the upcoming end of his journey. Yet it revealed his love, -- his concern for me. I assured him he need not worry about me, and that his concern is more a sign of his instinct to protect me than a justified fear.

I told him it reminded me of my frail mother's question one day only months before she died in 2000 when she was convalescing at our home. Looking up at me from the couch with her beautiful sweet face, she asked: "Who's going to take care of you when I'm gone?" That was unconditional love talking. Her question will nourish me to the day I die.

I may sometime share what Francis said. Right now it's too precious an intimate exchange to broadcast.

Yes, this is a Christmas Eve like no other because of that greatest of gifts. But there were other gifts today too:

Francesco and Susannah brought Francis ginger cookies, (after Francesco saw mention of Susan Christian's,) and Winnie delivered a big basket of macrobiotic staples on behalf of the cooking partners and their spouses. Hap our contractor put up a big mirror inside the chickens' coop to keep them entertained when they're literally cooped up in upcoming stormy days. Dottie Smith gave Francis a therapeutic touch treatment and bestowed good energy on me too while I slept thanks to Pamela's and her daughter Erica's coming which provided me with a refreshing late afternoon nap.

With the descent of darkness, Francis' room is made magical by the blue 8" square Christmas lamp lights a neighbor couple made (which they can see from their own window!) The magic extends outside too where loops of white Christmas lights illuminate the Canadian hemlocks directly within view of Francis' bed. Shawn Clark of Clark Tree (who cut down a tree for us in the fall) saw to that when he strung them up a few weeks ago -- using his cherry picker!!! One moment I saw him at the top of the fully vertical cherry picker, higher than our house! And the next moment he was hanging by his hips forward bending while draping the lights over the branches. And it wasn't a helper who manned the cherry picker either! It was he alone who
maneuvered it by remote control!

So, dear Charlie, be at peace. We are fortunate to have a warm home and good supportive friends. The biggest gift of all for me tonight was to hear Francis say he is "very happy." And so am I.

PS I have to admit that with Francis' withdrawal increasing, manifested by hours and hours of sleeping today, (literally all day except for surfacing for smaller than usual meal "courses,") the opportunities to read him your messages are decreasing, unless tomorrow is different (and it could well be.)

Full Range of E-Motions

Dear Family and Friends,

Here I am again, though funeral plans are nowhere complete. But I need to share a few things. Somehow, writing these updates clarifies my own thinking, and I simply feel compelled to tell Francis' story. Many of you have also told me these updates are helpful to you, so, lifelong teacher that I am, the desire to pass on what has helped me is in the marrow of my bones.

The tone in our home could seem strange to some! In fact, an old priest-friend of Francis' from Boston (He doesn't use a computer.) used the word "horrible" when I told him over the phone today I would be calling selected friends to our home the moment Francis dies. I want to give Francis one last personal ministry of love by washing his body with the support of close friends. We will weep together our great loss before I release Francis' body to the funeral home personnel for cremation.

Francis and I talk freely about death and I often weep, yet we find consolation in the big picture: "From the beginning until now the entire creation has been groaning in one great act of giving birth." (Romans 8:19-23)

When Francis sleeps his face looks gaunt and colorless. Actually even awake his cheeks look thin. Tuesday morning brought me closer to the ravages of cancer: Learning from the nurses how to use an incontinence pad to help roll Francis from side to side to care for toilet hygiene and change sheets, all the while he's in bed, I felt such anguish seeing his thin arms and skeletal frame, -- as if he were already at death's door! And he could well be because that activity laid him flat in a long period of sleep as happened on Monday after a full morning.

However, by late afternoon when Mike and Margaret/Meg Nobel, two of the selected close friends (They came to our wedding) came just to quietly see him, I told them as they were leaving that Francis and I needed to re-record two short chants Lee and Lynn had recorded on Sunday because they had inadvertently gotten truncated. But, I added, it was obvious Francis had no energy to sing after a full day like this! (I say "obvious" because Margaret saw his weight loss for herself when she helped me with more instructions in checking Francis' bed. A Hospice nurse herself, Margaret teaches Hospice nurses!) In any case I started singing for Mike and Margaret, -- in the kitchen, -- just so they'd hear the beautiful Aramaic Beatitude Francis so loves, the one I hoped, I said, we'd be able to re-record the next day.

Well, -- THEN, as I started singing it -- "Tubwayun layleyn dadkeyn b'lehon..." in the kitchen, we heard Francis singing along in the other room!!! So we quickly went to his bedside. By golly, he WAS ready to sing again! And by golly we ended up recording two takes of that Beatitude and also sang the second short chant -- the gorgeous passage from the biblical Song of Solomon, aka the Song of Songs. As on Sunday we were flabbergasted by Francis' renewed energy, and his strong voice.

The whole while Francis and I sang -- "Set me as a seal upon your heart, for love is as strong as death," we were looking into each other's faces, letting our full voices express that love that is as strong as, -- and even stronger than -- death. Those chants are so clearly soul food for him, for us!

Though for a few days over a week ago Francis hardly ate, and though he drinks much less water than he used to, -- (but he does eat grapefruit and drinks miso "tea" and Meg Wolff's fresh carrot juice,) he's been enticed to eat for several days now by the variety of the macrobiotic approach which includes either blanched veggies or long cooked vegetables (onions taste carmelized!) with various dressings, to the main dish, and even gluten free cookies, (though Susan Christian's ginger cookies are just as good!!)

I told him tonight I think this way of eating is prolonging his life. His reply with a smile, "Likely so!" (This noon he wasn't even going to eat but changed his mind when heheard me Mmmm"ing" over Meg Wolff's minestrone soup!)

Francis still has the upper body strength to lift his buttocks to scoot back on his bed (Meg noticed that with pleasure.) His supporting elbows, however, have begun developing skin breakdown. So we quickly tacked on protective safetac pads as we had to do for the sacrum! Dr. Jim Melloh said tonight when he gave Francis his healing treatment that his pulses were good. His voice is obviously strong, -- so how could he get pneumonia with active singing lungs even if he is in bed all the time? See what I mean? Very full range of emotions!

Two nights ago I picked up a pamphlet from the Hospice packet, called "Gone From My Sight," which includes The Dying Experience by Barbara Karnes. She briefly describes the signs of approaching death, e.g. "Withdrawal" wherein "Words lose their importance; touch and wordlessness take on more meaning." "Decreased food intake" is one of the signs: She explains: "It is okay not to eat. A different kind of energy is needed now. A spiritual energy, not a physical one, will sustain from here on."

The pamphlet ends with this passage --


Gone From My Sight by Henry Van Dyke.

I am standing upon the seashore. A ship, at my side,
spreads her white sails to the moving breeze and starts
for the blue ocean. She is an object of beauty and strength.
I stand and watch her until, at length, she hangs like a speck
of white cloud just where the sea and sky come to mingle with each other.

Then, someone at my side says, "There, she is gone"

Gone where?

Gone from my sight. That is all. She is just as large in mast,
hull and spar as she was when she left my side.
And, she is just as able to bear her load of living freight to her destined port.

Her diminished size is in me -- not in her.
And, just at the moment when someone says, "There, she is gone,"
there are other eyes watching her coming, and other voices
ready to take up the glad shout, "Here she comes!"

And that is dying...

Death comes in its own time, in its own way.
Death is as unique as the individual experiencing it.


I've heard this story several times at funerals. Though the imagery can only be imagery, it rings true to my experience because I saw how my own mother's faith helped her cross the threshold from this plane into a new life. She crossed over with the same kind of trust Francis demonstrates, -- both, aware of some mysterious new life awaiting them.

Within view of Francis' hospital bed in this room is a photo of my mother, below which I've placed another framed photo, -- of the famous Poulnabrone dolmen in the Burren, County Clare, Ireland which Francis and I visited earlier in this millennium. The dolmen's open door symbolizes that threshold for me, the one my mother crossed, and the one my darling Francis is approaching. And of course it's the one we're all approaching sooner or later.

Both Meg/Margaret Nobel and Pam Shays told me that hospice nurses call themselves "midwives at the other end." Very fitting, because we're planning to include in the handout for Francis' funeral the passage from the Eucharistic Liturgy we used for my mother's handout: "Life is changed, not taken away."


PS I'm observing that the "Message for Francis" email approach can result in a deeper sharing than might be possible otherwise. Though I may not get to read all of your emails the day they come in, know that I'm keeping at it, and that it's a special time for Francis when I read them.

Monday, December 21, 2009

Deep time

Dear Family and Friends,

It could happen sooner or later. No one knows when. But we're told to get ready even though Francis is eating again, and with "some gusto!" -- his words. (That gourmet macrobiotic food prepared by Meg
Wolff and company may prolong his life for all we know!)

As I'll share below, Francis and I also had an extraordinary day yesterday.

Yes, we're in a new phase now. I need to reserve my energies for Francis himself, for preparations for his funeral and for giving all the space needed to experience this precious time together when the veil is thin.

Pam Shay his hospice nurse said people nearing death need time to do deeply personal work. She explained that those who haven't experienced close at hand the process of losing a loved one tend not to understand that the terminally ill find visiting very tiring. Though they can rally for visits and look good, they're exhausted afterwards.

This truth was made obvious to us today: After talking with three members of VNA's Hospice staff, and after a visit with Fr. Mike McGarrigle, 85, a close friend for 50 years, Francis was wiped out for the rest of the day. In fact he's been sleeping since 3:00 pm until he surfaced around 8:00 pm for a little supper.

Pam made an excellent suggestion however, to give friends an avenue without tiring him. Those who want to talk to Francis could send me an email with the Subject line reading:
I will then read him your messages when he's awake and rested. It's likely I won't be able to answer your emails as I would really want to since it would take time away from Francis. But you can reach him this way and I know he would welcome the connection and returns your love.

He's been bed-bound since Friday night the 18th because standing and sitting in a chair are too much of an ordeal for him. Luckily reclining fully is, as it has been all along, a pain free position. Sitting in bed at a 45 degree angle is also okay for a short while.

He's such a sweetheart! In his situation, can you imagine his saying to me tonight after I helped him use the urinal while lying in bed, and then flossed his teeth, -- "This is another wonderful moment, -- sharing the little chores of getting ready for bed. My beloved is preparing me.....You look good, feel good and are good to me."

How can I not love a man like this ?! I met him in 1968 -- 41 years ago. That means I have been in love with this 82 year old man of mine for half his life!

There are many extraordinarily ordinary moments like this throughout the day. One very big one happened yesterday when Lynn and Lee came for their weekly visit. Surprisingly, this visit totally energized Francis, not just in the moment either, -- but for the rest of the day!

While we all ate our favorite Hot & Sour Soup (from Stir Crazy's on Congress St) which Lynn and Lee brought us, we talked about funeral plans, weeping and laughing while Rowan lay sleeping on our bed.

Then Lee went out to buy a microphone and set things up on our computer to record Francis and me singing the entire Lord's Prayer in Aramaic. I can't thank Nicki Piaget enough for this suggestion! Nor can I describe my joy seeing the earnest proud look on Francis' face as his voice got increasingly stronger and surer. My joy increased seeing Lee and Lynn's response to those beautiful middle eastern melodies! As the last note echoed in the room we spontaneously cheered. And the recording caught that joyous burst.

(When Lynn and Lee come tomorrow to talk finances, I'll ask them what it would cost to make lots of copies of this recording to give away after the funeral.)

Well, that mystical moment together didn't get lost on Francis. When I greeted him this morning he was so happy that I grabbed a pen to catch every word.
He said: "This is the deluxe way of getting up! Everything is falling into place! There are lots of wonderful moments! Wonderful, wonderful moments! NOW! They just keep coming! I'm amazed how much energy I had all day yesterday...It was unlike any other day! After two hours I usually cop out. But I was with it all day. I couldn't believe what was going on and on and on into the evening. Then I had a good night's rest."
Oh my God! What a gift to hear him talk like this!!!

I have so much to write about, and will continue sharing this story of Francis' journey sometime in the future. But except for skeleton outlines, detailed updates as I've been writing will have to wait until later, or at least until all the funeral preparations are completed. I want to dig out photos of Francis, and letters, and papers, and artifacts that illustrate the richness of his life.

It's been a life of great integrity. It's something to celebrate! Even as grief creates the numinous time and spaces that deepen the soul.

Dr. Sherwin B. Nuland put it so well in his book which I picked up years ago: How We Die, Reflections on Life's Final Chapter: "In ages past, the hour of death was, insofar as circumstances permitted, seen as a time of spiritual sanctity, and of a last communion with those being left behind....For many this last communion was the focus not only of the sense that a good death was being granted them but of the hope they saw in the existence of God and an afterlife." p. 256

PS I had an hour's nap this afternoon, thanks to the 3-5 pm scheduled rest time, and am going straight to bed!

Sunday, December 20, 2009

Hospice in place

Dear Family and Friends,

The signs are incontrovertible that the radiation gamble didn't work in Francis' case. Though he ate well tonight, -- and I will describe the precious supper we shared, maybe next time, -- Francis stopped reading the newspaper, eats very little now, and sleeps a lot. And saddest of all, his pain when standing is so insupportable, he spends all day in bed. Thank God he's comfortable there! OR, in order to escape the increasing pain when standing he must take 4 extra doses of dilaudid (a morphine derivative) from his pump before getting up. And that takes exactly 40 minutes.

Francis' bed is right next to this computer desk where I was sitting this afternoon typing his instructions for the financial tasks he used to do (though Lee is guiding me here.) Often stopping to talk, -- to love him with my eyes, and he me with his, -- I was startled for a moment because he seemed to look so well! Only for the moment it was as if he weren't sick! It made me heartsick to realize he is!

So there are these flips of the heart where the reality of our situation shifts into a sense of unreality. Yet, heartbreaking as it is, we are at peace with what is.

Since last Monday morning we've hired Maria, our neighbor up the street, to come during the so far busiest time, from 8:30 to 10:30 AM. She not only assists me so I can wait on Francis, but insists I eat breakfast too! Maria also takes care of the chickens, the dishes, the laundry, -- everything to free me to be with Francis. She's also funny, very efficient and smart with experience in her background of being a secretary and an EMT! We love Maria already. And the chickens do too.

Late last week we signed papers making Francis' entry into VNA's Hospice care official. Christine Turner their highly respected palliative care manager spent three hours meeting with us in our home. It was as productive a meeting as the one we had this morning with Pam Shay, Francis' primary hospice nurse, a woman of long experience and great compassion.

Pam unpacked medications that were delivered to our door yesterday morning (since Hospice pays now for those related to cancer,) opened the "Urgent Symptoms Management -- Hospice Pharmacia ComfortPak," and explained the uses of each medication. It was reassuring learning we have on hand what is needed. If or when certain symptoms happen the medications in this "ComfortPak" would be utilized under the guidance of a nurse through a phone call or visit, day or night.

So the Hospice gameplan will be in full swing tomorrow, Monday, when we see and talk with the two Anne's at VNA, one a Social Worker and the other the Coordinator of Volunteers.

In addition to the trained Hospice Volunteers provided who will come twice a week for a total of four hours, a good friend, Elinor Redmond helped me yesterday put out an invitation through the website to solicit our own additional volunteers. That way someone will come here every day, 7 days a week, from 3:00 to 5:00 pm specifically so I can rest or do yoga.

I learned from a long conversation with a close friend, Dr. Ann Lemire a few days ago that the most common reason end of life patients go to Hospice House or to the hospital when the end comes, is that caregivers can no longer manage at home. It's usually not lack of skill, but exhaustion. Ann said: "Taking care of yourself IS taking care of Francis."

I am now doubly determined to get the rest I need so that I can accompany Francis -- at home -- to the very threshold of his completion, of his fulfillment,... and of his arrival.


Tuesday, December 15, 2009

A Turn in the Road

Dear Family and Friends,

When Ken Hamilton, founder of H.O.P.E. Inc came yesterday for a half hour visit, he sat close to Francis and me next to the glass door facing the southeastern sun.

It was an ordinary question but his manner immediately drew out Francis. How was he doing today? Francis' response may surprise you, but it didn't surprise me, because of what has happened in the last few days: pronounced edema, not just in his hands and ankles, but upper legs and groin area, and even since this morning, -- his waist. Francis told Ken he was finding himself writing his obituary.

He went on to explain that earlier he had had short term goals he could meet. But now he couldn't meet them. Though the bowel problem does seem solved since last Thursday, I have also noticed him, in the last week, losing ground.

At first there seemed to be less serious reasons, -- constipation from pain meds' side effects (to be expected, etc.) But I've been wondering about his desperate need to recline as quickly as possible whenever he has to stand still, as opposed to walking. But now, even walking has become difficult.

Francis admitted he felt as if he were at a wall. When Ken questioned him about his expression "discouraged," (dis-courage) -- courage having to do with the heart, -- he asked about Francis' heart, and invited him to sing a heart song. Francis then looked at me, and we knew immediately which of the Beatitudes, his favorite, we would sing, because we've had the privilege of chanting it before the entire assembly at the National CORPUS Conventions' eucharistic liturgies, -- in Aramaic: "Tubwayhun layleyn dadkeyn b'lebhon d'hinnon nehzun l'alaha."

It's the beatitude we know as "Blessed are the pure in heart for they shall see God." But one reading of the transliteration I've pieced together from Dr. Neil Douglas Klotz' most popular book, Prayers of the Cosmos, is this: "Blessed are those whose heart has a deep sense of passionate purpose and the audacity to feel abundant inside. They shall see God, in a flash of insight, -- everywhere."

As his rich voice joined mine, it was hard for mine not to break because Francis' face came to life with a look I'll never forget.

Our meeting with Ken was the first of two meetings that gave Francis and me a special kind of relief. The second was the exchange we had with Tim Boothby, Francis' VNA nurse who came to replace once again, the dysfunctioning needle of his subcutaneous pain med pump, (dysfunctioning because his upper left leg can't support more needles.)

Tim had consulted closely with Dr. Inhorn before coming and knew about my conversation with him yesterday morning, -- the conversation which Francis had overheard in which Dr. Inhorn said Francis was developing "dependent edema" and had electrolyte imbalance, among other things. In this conversation Dr. Inhorn said going to the hospital wouldn't help, and that he had "no other great ideas."

Tim pointed out that that was Dr. Inhorn's way of telling us something. He related that the nurses and staff at Dr. Inhorn's office ("who like you," Tim commented) have hesitated to tell us that Francis already qualifies for home hospice care!

Actually, those of you who have read these updates from the beginning know that Francis (and I concur) does not want at his age of 82 to take extraordinary means to prolong his life. The only reason he accepted radiation is that it promised pain relief. Whereas once he could not sit in a chair without pain, now he can, so some good has come of it.

In any case Tim's compassion and insightful, sensitive directness was a relief to us. The three of us connected in an emotionally satisfying, deeply human exchange. He explained that home hospice care is a superior program. It would offer more services, and even more help for both Francis and me. He emphasized that as the website on hospice explains: "Hospice affirms life and does not hasten or postpone death."

After Tim left Francis and I had a long, soul satisfying talk with Lynn, our godchild Rowan's mom. It's Lynn who looked up the hospice website where I registered because it's packed with good information:

Here's another good passage that applies directly to us, where our doctor's office is concerned: "One of the problems with hospice is that it is often not started soon enough. Sometimes the doctor, patient, or family member will resist hospice because he or she thinks it means you're giving up, or that there's no hope. This is not true... The hope that hospice brings is the hope of a quality life, making the best of each day during the last stages of advanced illness."

No matter what, we will proceed with getting more help, and for more than 1 hour a day too! And I will continue massaging Francis' legs and lower trunk to get circulation going or simply for the relief it brings him. And we will not derail the journey into a -- not strict, but -- tasty "wide" approach to a healing macrobiotic diet (for me now as well as ) for Francis!

Meg Wolff herself, recovering from her third surgery for her amputated leg, is not only cooking for us in December, but organizing cooking classes for a small team of cooking partners to help us prepare those tasty healing meals starting in January! (If anyone else wants to "apply," just let me know.)

A nurse friend who works for hospice told me she knows of someone who went to hospice HOUSE to die since to go there one must be expected to live for only 6 months. But this person went on to live for 6 years!

Who knows, as Ken Hamilton encouraged us to do, -- what can happen when we get out of the box? And, Dottie Smith added, -- "Yes, out of the box, -- but within the circle of life."
Who knows if Francis will be one for whom the alternative therapies will prolong his life just a bit more?

Either way, the focus now is wholly on his comfort, on the quality of his life. So we're on our way: Next Tuesday the H.O.P.E Group meeting will be held in our home!

I read to Francis moments ago what Anne Underwood wrote: "Everything happens as you are ready for it." He shot right back: "I'm ready!"

At peace,
and Francis too
PS Francis and I chant together first thing in the morning the Lord's Prayer in Aramaic and one of the Beatitudes. I'm enclosing copies of the handouts we prepared for the CORPUS Convention in case you're interested

Sunday, December 13, 2009

Two Decisions

Dear Family and Friends,

Our day was brightened by two visits today, -- Lynn, Lee and Rowan's weekly visit and Dottie Smith's regular "Therapeutic Touch" treatment visit. Both were perfectly timed because they coincided with two decisions we made.

After coming down with a different kind of GI problem myself, (due to fatigue?) I acknowledged to Francis this morning that we need more help than volunteers can provide. We cannot abuse their generosity to cover all our needs. Lee is our Financial Power of Attorney as well as most reliable helper, -- as generous as Lynn is. So it was good to discuss this with both of them.

Our first decision is this: We will most gratefully continue to accept some help from the "Lotsahelpinghands" offered us, but with the holidays here, and winter, and other people likely needing "lotsahelpinghands" themselves, our decision to hire someone to come for an hour or more every day is helping me breathe more easily already.

The second decision came after Dottie asked Francis how his spirit is doing. Dottie is a nurse who got her PhD in Therapeutic Touch. She studied with a top authority on TT -- Dorothy Kreiger (if that's correctly spelled; no time to check, excuse me please.) When Francis said "fair" (even though the bowel problem has begun resolving itself in the last 2-3 days) and I told Dottie we had thought of joining some kind of group -- and did she have a suggestion -- without any hesitation she said: "Yes -- Dr. Ken Hamilton's weekly H.O.P.E gatherings in Portland for cancer patients." Hearing that we spontaneously let out a kind of sigh of great gratitude to Dottie.

Not only that but Dottie who knows Dr. Hamilton personally emailed him, -- and he will come and visit Francis on Tuesday in our home!!! What a blessing! So many blessings are showered on us! Supportive helpful friends, apprenticeship in macrobiotic cooking through meals from Meg Wolff herself, and now this!!

I wish I had the energy to write more about both Dottie's therapeutic touch treatments and our visit with Lynn, Lee & Rowan. But I will say this: I never before "felt" the warmth of flowing healing energy before when getting some of these treatments, but Dottie's touched me palpably!

It was heartwarming watching Rowan interacting with Francis about a book she likes (She's 5) and Lynn putting up insulating plastic over our bow window, and Lee looking over papers for us. But I need to listen to my own body which will no longer tolerate pushing through fatigue to get things done. I must now practice what I preach! ;o)

Full of hope,

Thursday, December 10, 2009

The latest skirmish

Dear Family and Friends,

The subject of this email may be restricted to adults.

To summarize this third round of the skirmish with the bowels (which happens roughly every 4-5 days,) tonight after we both collapsed in a two hour nap, (after a before-supper nap,) I thought of -- "Wrestling with Goliah," or "Battered but Victorious" as the subject for this email.

Why so? Because after being forced to stay up from 3 to 5 am two nights ago, and occupied with it (the skirmish) much of yesterday and today (until the successful final-for-now evacuation and calm by late bedtime,) -- Francis and I felt like punch drunk boxers who've been in the ring too many times. Even patient Francis admitted, "The bowels are exhausting!"

His physical therapy progress is set back by these challenges, but he bravely starts over again.

I cut up my oversized worn teeshirts at first because old fashioned diapers are better for the environment, but I drove out in the storm yesterday morning to get "Depends" supplies after all. And thank heavens for this human energy saver which also helps the sufferer relax -- an important element for success.

I'm aware of a wider world outside our haven here, and I can understand better than ever the suffering endured everywhere, -- but I recognize this is my calling right now: To be here for him is to be here for me too, and for the wider world itself.

Now off to bed again,

Sunday, December 6, 2009

Encouraging progress!

Dear Family and Friends,
Francis and I spent over two hours this afternoon at Meg and Tom Wolff's home in Cape Elizabeth. The purpose of our visit was to discuss Meg's incredibly generous offer to teach volunteers how to make one macrobiotic meal (or more if they wish) to assist me in cooking for Francis. It's a plan she saw work with one of her friends.

So while Francis lay on the couch facing the windows overlooking the ocean, -- all the while with "Cuddly" their darling white poodle snuggled in the crook of his arm, -- Meg and I sat in the kitchen where we talked as she prepared a dish with some locally grown navy (or pea) beans.

I'm often enough warned that the macrobiotic diet can be rigid. Though Meg knows how to do the diet in its strict healing version too, I'm happy to learn her approach is also "wide." Meg explained that macrobiotic cooking originated in Japan after World War II. It was there they discovered the diet that healed victims of radiation from the bomb. The diet then spread worldwide to heal other "victims" of cancer and radiation using Japanese foods. But, the foods they ate were indigenous -- local foods for them. So Meg reasons that our indigenous local beans are as good for us as their local beans are for them! We like hearing this "wide" approach since that's how we're doing this anyway.

In spite of a challenging second swing of the pendulum on the GI front this week, and a new kind of swelling in his ankles, -- Francis is making good progress!

1) Dr. Inhorn advised him to use "Miralax" since unlike most other laxatives this one is simply an inert substance that gets things moving. I must warn you about Smooth Move Tea. Even though it didn't make a dent in Francis' GI armor, a friend emailed to say she had had a "violent reaction" to it after surgery some years ago. AND, after I innocently but unwisely tried it out of curiosity last Sunday, my own stomach was queasy for 5 days! It's not as harmless as it looks!

2) Dr. Inhorn also diagnosed "low protein" and nutritional deficiency as culprits for Francis' swollen ankles. So I gave him a high energy protein drink as soon as we got home, and he's been eating fish with every meal. We also realized that Francis' reluctance to take his vitamins on top of all the other meds has consequences! So now he's taking the full dose of 4 tabs a day, not just the 1 he used to take when he didn't put it aside. And we're relieved to see the beginning of a change for the better!

3) The most encouraging thing is Dr. Inhorn's telling Francis he's ready now (Nausea hasn't been too bad lately) to decrease the pain med dose! So when we got home I immediately unpealed one of the 25 mcg Fentanyl pain patches on his chest which has to be changed every three days. So the dose is now 100 mcg instead of 125.

To give a little glimpse of what cancer survivors have to go through, even in little ways, on the road to recovery, -- besides the patches, Francis is also wearing two other vehicles of pain control, -- the subcutaneous infusion pump whose needle is inserted in his thigh, and the TENS Unit whose sticky electrodes adhere to either side of his lower spine. The tubing for the first and the wires for the second can easily get tangled or pulled out even by "the device" for the TENS Unit which is hooked in front. (I devised a belt just for that device to prevent this.) All in all, it's no small thing for him to maneuver these in normal daily living!

4) But yet another encouraging sign is the new skin that has shed the crusty scabs of his radiation burn on his back. We see this as a sign that slowly but surely the healing is taking place within the intestines too.

Lynn, Lee and Rowan came over today to help and visit. It was heart warming for me to see Francis talking things over with Lee as I was returning from the chicken coop. Our "family" also sampled some of the delicious macrobiotic leftovers Meg and Tom have been delivering to our door all week. A few Fridays ago a friend told me she hadn't tasted one good macrobiotic dessert yet! But Meg's Amasake & Tangerine Pudding makes a scruptious dessert! Even though, e.g. last night he lost his supper (and that hasn't happened for 5 days!) it's encouraging to see Francis eating bigger portions now!

Francis and I don't feel (yet?) we can celebrate the cancer that has changed his life and mine. But it has revealed the inestimable blessing of friendships, old and new!


Tuesday, December 1, 2009

Smooth Moving

Dear Family and Friends,

I want to reassure you, -- though his steps are short, his posture bowed a bit, and loss of weight visible, it's been smooth moving for Francis since yesterday morning. After acupuncture today he drew my attention to how much energy he had, -- how long he was able to go without needing a nap. When I told him how good it is to see him smile again, esp. since last Thursday, he explained: "It was just a down spirit in keeping with what was going on. (The GI tract dysfunction) I'm glad I'm negotiating all the curves, and doing a little reading in the meantime. "

It's been smooth moving for us in other ways too. Originally, Francis had found the barley grass drink (Green Magma which comes in a powder) too unpalatable unless I mixed it with carrot juice. Since I won't push him on anything, I put it aside.

Same thing with the Smooth Move (Senna) herbal stimulant laxative tea. Though at first he said he liked the flavor, and it even worked for him, -- later on he didn't drink it, so aside it went too, -- in the fridge.

Then two days ago I figured I'd drink it myself since the smell was appealing, and I figured because it wasn't hot, it wouldn't do much anyway. Was I surprised when it cleaned me out!! Three times. That tea works!

So tonight I brought it up again: "To keep ahead of 'those pesky bowels,' (as a cancer survivor friend calls them,) -- what do you want? Smooth Move herbal tea which I assure you work?!!! Or do you want suppositories and enema when the problem occurs next time?" Well, he not only chose Smooth Move tea but liked it once again, and easily downed it!

Tonight also, after telling him what Connie, his macrobiotic counselor told me over the phone this afternoon, -- that barley grass juice is very alkalizing, that the chlorophyll gives a big boost, and that it helps rid the body of radiation toxins, he asked to try it again, without carrot juice to camouflage it this time. And he found it perfectly acceptable by itself!!

In fact, when I inquired yesterday about the turkey dinner "doggie bag" he had originally wanted to bring home, since it was using up space in the upstairs freezer, Francis told me he had lost his interest in it for now! That's what I'm doing with foods that don't fit his current need for the healing diet his body is accepting, -- freezing them for a future day.

But for now he's genuinely enjoying the fare, like the miso soup I made fresh for him tonight, and the rice porridge he had for breakfast made from rice cooked in the pressure cooker. Now I can understand why they say once you've had it cooked this way there's no turning back.

I must now smooth move along so I can get enough sleep.


Monday, November 30, 2009

Downs and Ups

Dear Family and Friends,

Friends with close-up experience of cancer already know what I'm beginning to learn, -- that pendulum swings are to be expected.
One wrote: "I know that it will be up and down, (both of my parents had cancer and went through radiation and chemo)..."
Another pointed to -- "the most illusive of all, those pesky bowels!"
And a third enlightened me further, explaining: "Doesn't matter how well you eat. Don't worry about it being habit forming.... You really have to take these things on a regular basis because those meds are drying and also slow GI motility. You may even want to keep a couple of those saline fleets enemas on hand as well."
In other words, massaging the colon not to lose natural peristalsis is no match for the side effects of powerful narcotics.

So that's what we've been dealing with in the last two days, -- the whole GI tract from top to bottom. The chart I created to help us discern what might have caused the seeming downturn in ability to keep food, and to evacuate it in good time, may be of help to another caregiver, so I'm attaching it. It's helping us notice patterns, e.g. Francis has no trouble digesting rice (Alhamdulillah!) but maybe even tasty beans cooked for 2 hours may be too much for him right now. But he ate turkey & trimmings on Thanksgiving Day, -- right? Go figure!

Well in the middle of all this, we received two gifts, -- the help of Sally and of Meg.

Our good friend Sally who's collected delectable macrobiotic recipes for the last six years spent Friday afternoon cooking with me. Though Francis spent most of that day sleeping off his Thanksgiving escapade, he made a comment Sally got a kick out of, -- that we were "cackling" in the kitchen! Sally showed me how to cut and prepare blanched vegetables cooked separately in the same pot, but dunked in the order of mild to strong taste. Each is then removed with a Chinese skimmer. (Sally will get us one locally.)

The veggies are so tasty served with a dressing I immediately fell in love with: tahini, lemon juice, shoyu and umeboshi vinegar. She got the recipe at one of Warren Kramer's workshops. He's a well known macrobiotic counselor from the Kushi Institute in Boston. Before she left Sally promised to copy some of her favorite recipes from the bulging spiral notebook she brought along, -- her "bible," she called it.

It's interesting to note that Sally departs from this, her preferred way of eating, when, for example, summer tomatoes are in season. She doesn't avoid them then just because they're nightshades. And for Thanksgiving she made a roast pork with cheese! Hardly a macrobiotic dish!

After Sally left Francis also enjoyed the miso soup and tender veggies cut Japanese style, though he didn't like the dressing quite as much as I did.

The other gift is the arrival in our life of Meg Wolff. When I sent an email request -- "Helping me cook at home for Francis" through
Meg responded !!! I'm exclaiming here because you see, Meg teaches macrobiotic cooking!

In fact, Meg is one of the two possible Maine macrobiotic counselors Francis and I had to pick from some weeks ago. One of the main reasons we chose Connie Arnold instead is that we heard Meg travels a lot, giving talks, and also because someone we know highly recommended Connie. If you check out Meg's website you'll see what a vibrant talented person she is. Most startling is the cover of Meg's book Becoming Whole showing her with right leg amputated, without prosthesis, arms uplifted.

Meg explained that she's now recuperating from her third surgery, and said it would help her too to help us with cooking. She invited us to go to her home in Cape Elizabeth so she can teach me about macrobiotic cooking. Francis could lie on the couch she said, and look at the ocean. That was to have been today. But we were both wiped out by yesterday, today, so we're in the process of rescheduling that date.

In the meantime we've discovered what a generous person Meg is! She has already delivered to our home some delicious barley mushroom soup (our supper tonight) and a Japanese gelatin dessert called kanten. Made from seaweed it's not only full of nutrients but delicious. Francis likes it too!

The friend I quoted at the beginning of this email who said "I know that it will be up and down..." ended with -- "but you certainly seem to have had some good solid ups." Certainly these two openings into our macrobiotic adventure are "solid ups!" Since we are what we eat, with a healing diet to boost him, I've got high hopes that Francis will join the ranks of those who are cancer free. And I will add, though they're not easy, -- pendulum swings and all.

Thursday, November 26, 2009

5th Reason also a surprise

Dear Family and Friends,

(Just returned from my bath:) How could I have forgotten TODAY?!!

Yes, going to cousin George Remy's home in Gorham to share the Thanksgiving meal he and Heidi and Charlie prepared this year (We alternate years) was special indeed!

Charlie was home from Grad School at Simmons. He's getting his MA this month in Library Science so it was interesting catching up with George and Heidi and talking about Charlie's job prospects and the excellent one hour radio interview on the subject of asperger in which he recently participated:

It also gave Francis another chance to get a change of scenery, you know, -- not just being cooped up ;o) with me all the time! ;o)

What's surprising is that Francis called George a few days ago to tell him that in no way could he make it for Thanksgiving. So we had planned a quiet day with a friend volunteering to bring a casserole and tofurkey. But after yesterday's escapade at the Thai restaurant, Francis called George again to say he could!! What joy!

The surprising part was doubled, however, because yesterday afternoon after Francis' call saying we could come, I was beginning to get a sore throat. But I applied the full remedies I know of to nip a sore throat in the bud: -- lots and lots of sleep and water and Virastop, Echinaecia, gargling listerine, and sucking on a half clove of garlic cut on two sides... Along with these, the key for me is mainly to stop when fatigue hits. And if sleep is difficult, -- SAVASANA, a most deep restorative practice. It releases tension from within. By nighttime, but clearly by morning, I knew I had nipped it in the bud, and sure enough, there's no trace of a sore throat today. The letting go did its magic.

So I'm off to sleep right now. And when Francis awakens (He's been sleeping for over an hour,) we'll start his night ablutions before we both give thanks for this very special Thanksgiving Day with the Remys.


PS The hens continue to be joy and fun, even the work in caring for them. Three of them were sitting on the perch in the outside run this morning. Three of the six lined up close, one of each color, -- red, white and black, Sadie, Nelli and Midnight, it was a striking sight. And their eggs are the very best!

Surprising reasons for thanks giving

Dear Family and Friends,

My First surprise -- that while I was in the chicken coop Tues morning, Francis, who couldn't get up out of a chair for almost three days because of a med that worked (which we then dropped,) -- used his walker to get to the side porch and bent over to pick it up! Shortly afterwards he knelt on our own bed (on a frame 3" from the floor) to facilitate my positioning a suppository, but then raised himself up again with the walker's help, virtually from the floor! All with some alacrity!

Second surprise -- that someone for whom within two days 2 suppositories and an enema yielded mostly only mucous, -- and especially for someone who had lost his supper the TWO PREVIOUS evenings, I was surprised that this someone requested on our return trip from Freeport that we stop at the Thai Restaurant near our home! He craved fresh spring rolls. So we stopped and he ate two pieces and shared some of my meal of Ginger Tofu with Brown Rice. All with no problem! I mean, though he ate slowly, he didn't have to wait as long as usual between bites. And he didn't lose this supper.

This episode reminded me of our stopping to satisfy Francis' craving for a bagel some weeks past while returning from seeing Dr. Tsao, (Fern,) his acupuncturist. This time we were returning from his first treatment (since the bone cancer diagnosis,) of Cranial Osteopathy (as distinguished from Cranio sacral therapy which some massage therapists offer.) Francis has been seeing Dr. Kevin Zorsky his DO regularly for the last 20 years. Powerful treatments these -- Acupuncture and Cranial Osteopathy!

Third surprise -- that this Thanksgiving Day, when I was prepared to use two techniques Ron Lemire taught me earlier this week (He arrived right after the enema attempt) to stimulate evacuation NATURALLY, Francis announced preemptively this morning that "it" had happened at 5:00 am!

A Digression on inducing peristalsis:
One technique is acupressure applied in a pulsating way at a specific point at the base of the index finger. The second is giving gentle external massage to the colon itself, beginning with the ascending colon, moving across the transverse colon, and down along the descending colon that ends in the rectum and anus. Before trying it out on Francis I knew just the book to review: Body Stories A Guide to Experiential Anatomy by Andrea Olsen and Caryn McHose.

I can't resist sharing this gem I found before putting the book down: "This book is dedicated to Alison who reminded me that the function of a book about anatomy is not to demystify the body -- it is to help embody the mystery." I really really like that quote! It hints at what I've discovered is a profound spirituality.

My fourth and last surprising reason for thanks giving, and the deepest one, is rather personal. As those of you who know me well have surely observed, -- in areas that interest or compel me I'm a person who likes to go into detail. I like to do important things thoroughly and well. That trait has its advantages. But it also has disadvantages: I can get too meticulous for my own good. Lucky for me Francis has learned to live with me, all these 37 years, appreciating the advantages I bring to our relationship.

But on Tuesday, on top of mounting fatigue from lack of regular sleep, there were extra snafus to deal with, like Francis' PCA ringing a loud alarm every two minutes. So while he pressed the stop button each time, I was calling for a VNA nurse to come to our home. The message flashing on the screen read "High Pressure." It was easy to see why: there was blood in the tubing of his subcutaneous infusion pump. The whole episode took over two hours to clear up because the nurse got lost en route here, and then needed help herself to insert new tubing before she changed the needle. Apparently the nurse who had changed the needle earlier in the day had hit a small vein or capillary....It was all, well, -- very tiring.

In any case, later on -- or was it the next day? -- as I lay on our own bed, with Francis in his hospital bed only 13' away, I was talking nonstop, he told me later. I was sharing ideas I had gleaned how to help him. That's when I heard him say two words I never heard him use with me in all these 37 years: "Shut up! Give us both a break!"

Of course I was surprised, very surprised, even initially stunned. But I knew immediately there was no anger in it. And he was right! So I shut up, and increasingly realized this was exactly what I needed to hear: I very much needed to stop and just let go. So without another word I let go gratefully, and it did me a world of good! I remembered my mantra. I remembered to practice "savasana," the yoga posture "corpse pose," -- which is a total surrender. This little beneficial wake-up slap is a reminder I won't forget. We laughed about it today. Francis is good for me. And I know I'm good for him too. What reason to give thanks!


Sunday, November 22, 2009


Dear Family and Friends,

"Alhamdullilah!" is Arabic for -- "Praise the Lord!" It's also one of the Dances of Universal Peace chant/dances which Francis has loved from the beginning. In fact we often use it as a grace for meals.

If you saw the film, "the English Patient" you may remember the scene when an Arab who's trapped in his car buried in a sandstorm, cries out as he's dug out -- "Alhamdullah!"

It's fitting for us to use this cry of praise for two reasons.
First, if you remember, I mentioned a special event scheduled at Portland Yoga Studio yesterday: Halima and Abraham Sussman of Cambridge MA who were originally scheduled to lead an annual participatory Dances of Universal Peace retreat in Portland, led instead -- a benefit to help defray our expenses, -- "Community & Healing, an afternoon of renewal, generosity and healing."

Much as he would have liked to go, Francis was nowhere able, physically. Even for me, participating for about an hour was challenging enough. But the joy of it supported me. And it supported Francis when our Sufi leader friends came to visit him afterwards. So, -- "Alhamdullilah for that grace-filled community & healing gathering of 40 people!"

After a very rough week of Francis' seeming non-stop spitting of backed up gastric juices, I found it hard to see him bent over his "spitoon" looking gaunt, and rarely smiling. But the scopolamine patch Dr. Inhorn prescribed which dries up those juices really works! In contrast to the 5 oz of gastric juices I kept track of yesterday, there was only 1/2 of an oz tonight! And what a difference in his manner and appearance! He looked like himself today!

Of course the "dizziness" side effect scared us. This morning, while I was in the kitchen, I heard a thump and yelled "What happened?!" In an attempt to stand up (something he's been able to do easily,) he fell from his chair onto the rug but luckily the hassock used to elevate his legs cushioned the fall.

Then when Scott the PT from VNA came, Francis was unable to get out of his chair to walk. Same thing happened later in the day. Then, when I asked him only to stand while hanging onto his walker while I sprayed fluid on his TENS unit electrodes, he was so dizzy he had to quickly sit down to prevent a fall!

So I called the doctor-on-call but we immediately decided on our own to remove the patch. Good thing, because no response came from the doctor on call! But it was obviously a good move since after another nap, Francis awoke feeling even better -- AND, able to stand up!

That's when together we spontaneously started chanting -- "Alhamdullilah!"


PS The doctor called this morning and apologized for forgetting to call back! AND he offered to send a prescription to the pharmacy that's more short term to replace the more long term scopolamine IF the gastric juice "bolix"ing up happens again. He's such a good doctor!

Thursday, November 19, 2009

Report from visit with oncologist

Dear Family and Friends,

Our visit with Dr. Inhorn today was very productive. He believes Francis' need in the last four days or so to spit gelatinous mucous almost constantly when he's up, is due to a backup of gastric juices and being all plugged up.

We learned that even though very little food is taken in, the body produce a lot of gastric juices. So Francis does indeed need help to overcome constipation, no matter how little he eats. And once that's taken care of, he's likely to eat more!

So we need to "push fluids," -- and, because he was restricted on fluids in the past (to keep the sodium up,) Dr. Inhorn prescribed a medication to keep the sodium up, -- so those fluids can flow. And there was another prescription too, -- etc. etc.

The benefits of radiation are expected to materialize in good time. There's no talk of chemotherapy. Not only are the risks too high "for an octogenarian, even one in good shape," Dr. Inhorn said with a smile, -- chemo for osteosarcoma is not likely to work anyway.

So the plan is to free Francis from unpleasant symptoms. "We're comfortable with that," Francis adds. I am too. Our prayer is for him to be pain free without lots of meds, and to regain normal body functions.

Then our hope for a long life for him (Remember his aunt Irene who died 2 months short of 105) -- depends on healing from lifestyle choices, and love and light, and prayer and joy in community. And taking action in this world as his strength allows.

Elaine, -- so happy to see Francis at my side looking much better tonight!

PS I know it's late, but he had a nap this evening.

Wednesday, November 18, 2009

Challenges not over

Dear Family and Friends,

It's been hard going lately. I've been worrying a lot about Francis' very small intake of food. AND because of that I've been very uncertain about giving him help to evacuate. Even nurse friends thought I shouldn't since there's not much bulk there.

So after 5 days like this, because he looked so sick last night, I called the VNA. I thought he looked dehydrated, and with verbal suggestions what to do, he got over that hump. Then today a VNA came and took blood for several tests one of which is sodium. Is it low again? (Some cancers cause low sodium.)

There's also been this mysterious "spitting" which has increased. Not from lungs either. Is it because of damage to his intestines which "were in the way" of the radiation? Is it part of the process where his innards are healing just as the burn on his back is healing? How come he seemed able to eat more easily while in the hospital? Was it because he was much more drugged there?

In any case Dr. Inhorn will have test results when we see him in his office tomorrow. We'll be able to probe these mysteries with him.

We're both relieved right now since his own body expelled all this build- up after 6+ days! Both ends. Bile too. Twice. But the spitting hasn't stopped.

In spite of all this, even last night, Francis expressed an interest in showing up briefly at the Community and Healing gathering at Portland Yoga Studio on Saturday from 1 - 5. We're hoping, with the help of an almost lifelong friend, Joe Brannigan, he'll be able to climb the stairs to the Studio. It was his idea to use a portable fold up stool to sit on for a rest at each of the two landings. But, he adds: "All this depends on how I feel on Saturday."

With his insides beginning to clear up, test results and remedies tomorrow, and some PT, -- we're hoping he can!

On the pain front, the TENS Unit is helping! Scott, his PT said Francis shouldn't hesitate to increase the degree of stimulation because higher produces better results. As the TENS triggers the brain to produce endorphins -- his own body's natural pain relievers, -- it apparently produces no known side effects either.

All in all it's helpful to look ahead, as our out-of-state doctor/friend advised. And he added: "Getting through radiation is a major feat. You've gotta hand it to him -- to be going through this for so long!"

Thank you all for your prayer & good vibes. And, as several of our Quaker Friends put it, -- keeping Francis and me in the light! Yes, thank you Cush, -- "Lots and lots of light."


Sunday, November 15, 2009

Dancing with Irregularity

Dear Family and Friends,

Because I let Francis sleep until he naturally awakens, we're dancing with irregularity. After a 10 minute post-breakfast walk outside in the sun this morning, he slept for 2 1/2 hours. He slept that long again this afternoon after losing his lunch. But I did awaken him this evening when it got almost too late for supper. Food matters too.

The irregularity affects me too since, e.g. a mid-evening nap just a while ago, when Francis napped too, means I'm wider awake when I should be winding down. But no matter! His healing sleep is the important thing.

Now here's one advantage of taking rehab at HOME: he can sleep all he wants whenever he wants! As our good friend Lucy wrote last week: "Everything everyone has said about rehab is true, on both sides! Which makes decisions so difficult to make. I'm remembering Jill Bolte Taylor's comment in her book My Stroke of Insight, that she may have never recovered if she had been in rehab because of the fixed/rigid schedule, and that when she needed to sleep, she really needed to sleep."

Francis is STILL dealing with the side effects of his two narcotics (the pain patch and the PCA - subcutaneous infusion.) So, eager to utilize the non-drug approach to pain control which Dr. Blazier ordered, when Francis' TENS Unit arrived in the mail yesterday, I called VNA to see if their PT could come set it up for him. (TENS is an acronym for "Transcutaneous electrical nerve stimulation...defined by the American Physical Therapy Association as application of electrical current through the skin for pain control.")

He likes it. The electrodes sit in four movable pads velcroed to a wide waistband circling his lower waist, and holding them snugly against his skin. He likes their warmth and the tingling which distracts the brain from pain. If this works well enough, and as the benefits of radiation "kick in" more and more, we hope he'll need to press the "DOSE" button less and less. By the way, you should have seen the ease with which he rose from his chair so Amy, the PT, could put the TENS on his back!

If what three knowledgeable people told us is true, -- that about a week and a half after radiation ends, patients begin to feel much better, Francis may be able to join me in dropping by briefly at Portland Yoga Studio next Saturday for the 1 - 5 pm "Community and Healing" afternoon benefit. He wants to! With all the deep deep sleep he needs right now, it's hard to believe he'll rally that quickly. But, he reveled in going out for acupuncture yesterday! "Fern" said his color was better and his pulse was good!! Thin or not, looking like a star dressed with his Greek hat and London fog raincoat, his PCA slung in a case over his shoulder, he exclaimed, -- "It's good to do normal things!"


PS Thank you all again and again dear friends for your continued loving support of all kinds! It's difficult for me to be forced to express gratitude in this general way, or just with an email, when I would like to send individual cards of gratitude!

Thursday, November 12, 2009

Birth Pangs and Adventure

Dear Family and Friends,

Francis and I were up the last two nights dealing with his recent healthy return of bowel normalcy (Yeah!) and last night with his nausea (Yes, again!) and efforts to keep his blood sugar up without solids.

But when I saw that the lights were on two houses down where Chris and Chris Downy's first baby was born last Saturday, it seemed to me both households were dealing with new birth. Just as they were losing sleep introducing Ruby into this life, so were we with Francis' regenerating body functions.

His energy was so strong the morning after his return from the hospital, it seemed to us as he sat in the kitchen for breakfast for the first time since we knew cancer had struck, that the last two months had been a dream. Perhaps that's why after three good normal meals for Tues' supper, Wed's breakfast and lunch, he might have been caught off guard. He might have acted too normal forgetting he needed to eat small amounts with lots of pauses during meals.

I deduced after he lost his supper that his intestinal flora are likely in need of repair. So we pulled out the bottle of dairy-less probiotics Jan brought. But the nausea episode set him back today when he took solids again only for supper.

But, just in time, Francis' consult with a macrobiotic counselor which had to be postponed because of his hospitalization, finally took place today. Connie Arnold who lives and teaches macrobiotic cooking classes in southern Maine, cured herself of non-hodgkins lymphona without radiation or chemo, six years ago. Armed with a detailed questionnaire Francis had filled ahead of time, and an examination of his body, -- a very interesting development here! -- (Connie studied at the Kushi Institute in Boston,) she made specific recommendations for his healing diet.

I was pleased to hear Francis say after supper that he's ready "to take what we can do." The detail of it seems overwhelming. Connie expected that. So her last bit of advice was freeing: "KISS." I thought she meant I should kiss Francis often -- (which I do anyway! ;o) But no, -- "Keep it simple sweetheart." Yes, we'll do just that.

When Dr. Inhorn called during our visit I told him what was going on. His reply? -- that Francis should find his food ENJOYABLE. Interestingly, Dr. Fern Tsao, the Chinese acupuncturist he'll see again on Saturday, said much the same thing, because Francis needs to be built up. Connie said the same thing too. Enjoyment of his food is advice with which we totally agree.

In any case, after carefully studying the material Connie left us, which includes more than recipes, and after getting "Fern's" (as she likes to be called) okay that Francis is ready to start, we'll gradually embark on a healing adventure for him. In some ways it's not very different from what we already eat. In years past when we went for yoga workshops in Cambridge, we enjoyed many meals at Masao's special (and popular) macrobiotic restaurant.

Nothing will actually change in our lotsahelpinghands approach
only a little re-wording and more flexibility. Stephanie will change the calendar titles to reflect changing circumstandes. For example, without weekday radiation appointments to go to, morning or "AM Volunteers" may arrive for a few hours anytime between 8:00 and 10:00 am. And late afternoon or "PM Volunteers" may arrive anytime after 4:00 pm. In both cases we'll gratefully receive help for whatever needs to be done, -- picking up items en route to our home, doing dishes, laundry, chores, maybe helping prepare special meals for Francis, or freeing me to rest or do yoga or -- "Whatever!" ;o)

Some of the healing remedies prescribed by the macrobiotic way will take up more of my time, not less. But the meals you bring (but mainly for me now,) will continue to free me to help Francis.

If any of you are interested in helping me do this, just let me know. I know some of you have experience I don't yet have on this front, though I'm eager to learn, and we have Connie's guidance to go by. I see it all as Francis does, as an adventure in healing. It's not a life-long rigid regimen. In fact Connie pointed out that for healthy people some food she recommends that he avoid -- in order to alkalize his body -- would be just fine for him later. But for now we're ready for this.


Tuesday, November 10, 2009

So much joy and gratitude

Dear Family and Friends,

I can't do justice to the depth of joy and happiness Francis and I feel coming home buoyed up by the loving support of such good friends! All of it is so deeply appreciated: the new egg crate mattress Anne left for Francis, Susannah's and Nicki's assisting him up the incline where he slowly climbed the five stairs to our side door, Nicki's cooking supper for us and both of them helping us further understand how to work his new "Sub-Cu Infusion" PCA machine to which he's tethered. He needs assistance carrying it around since to him right now "It's like weight lifting!" But I'm eager and ready for sheer joy it's working for him!

Thank you for sharing your own joy in ours! Some of you are quite eloquent! I wish I had time to quote your insightful, even exhuberant comments! -- but I must finish putting things away so we're organized for tomorrow. The VNA nurse is coming, and what a relief not to have to hurry out to a radiation treatment! We expect follow-up appointments with both Francis' radiology oncologist and his medical oncologist Dr. Inhorn. Then there's an acupuncture appointment coming up, and several other alternative therapies in the wings.

I firmly believe the love and prayers and good vibes and healing energy we're both receiving will melt whatever is left of Francis' cancer which Dr. Villiotte admitted the radiation cannot completely "get."

As one friend put it so well: "For now, you both have worked with the many miracles that medicine has to offer and can “come home” to deep healing which love and beauty can provide."


Monday, November 9, 2009

"Going home IS rehab!"

Dear Family and Friends,

Very briefly, because I'm going right to bed in order to be at the hospital early again in the morning.

Our meeting with Dr. Blazier, the head Anesthesiologist we've been waiting for, couldn't have gone better. He looked surprised when he saw Francis and told him he was "pleased how well you look!" He had expected him to be "slugging along."

We talked technical stuff about the PCA and the fentanyl patch, AND, briefly about the "TENS unit" Francis will also be getting for pain control.

His best line came just as he left when I told him that some people thought Francis might want to go to a rehab facility. I was alluding specifically to Francis own primary care doctor who said this morning that since Francis MIGHT want to go for a week of rehab since he is now at the end of radiation (1 more tomorrow) -- and here Dr. Katz traced in the air the bottom of a hill which Francis is about to climb out of and up to the other hill, where, he said, he'd feel much much better in a week to a week and a half.

But Dr. Blazier said: "Going home IS rehab! Go home and do some things!" he added. That did it for Francis! He had felt a bit fearful earlier in the morning, -- afraid of burdening me, -- but we had cleared up those fears with my assuring him I wouldn't be alone. There'll be VNA services, and "lotsahelpinghands!"

So now he's clear he wants to come home "and do some things!" Barring some unusual development, -- it'll happen tomorrow or Wednesday.