A Turn in the Road

Dear Family and Friends,

When Ken Hamilton, founder of H.O.P.E. Inc http://www.hopehealing.org/AboutHOPE.asp 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 http://www.corpus.org/ 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: http://www.cancer.org/docroot/ETO/content/Eto_2_5x_What_Is_Hospice_Care.asp

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,
Elaine
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