Friday, June 26, 2009

June 26, 2009 - High Anxiety Threshold?

This afternoon I have a routine office visit with Dr. Lerner, my oncologist. He’s received a report from Dr. Sher, the endocrinologist I met with a week or so ago (I didn’t blog about that visit at the time).

Those who’ve been following this blog for a few months may recall that, back on Valentine’s Day, I had a PET/CT scan that revealed a possible nodule on my thyroid gland. A subsequent ultrasound confirmed that, yes, there was something abnormal growing out of the left side of my thyroid.

Dr. Lerner told me he didn’t think it was anything significant – most of these growths are benign, he explained, and this one was pretty small, at that – but he thought it was worth seeing an endocrinologist to get it checked out.

Through a series of scheduling misadventures, it was only a couple of weeks ago that I finally got in to see the endocrinologist. Dr. Lerner had given me the name of a Dr. Asnani, saying he wanted me to see that particular specialist, and none other – although he emphasized it wasn’t urgent, and I could meet with him any time in the next several months. Well, Dr. Asnani’s office staff told me he was in India on an extended visit, and they weren’t even making appointments for him until after his return. I called back over a month later, as they had instructed, and it turned out they had no free appointment for about another month and a half. The long and the short of it was that I finally got into his waiting room on June 16th – just over four months after the nodule first appeared on the CT scan!

Come to find out, Dr. Asnani wasn’t available that day, as he was making hospital rounds. I’d be seen by a resident, Dr. Lee, instead, and then by Dr. Asnani’s partner, Dr. Sher. Dr. Lee was actually the most helpful. She spent a lot of time with me, explained everything, and was very responsive to all my questions. She carefully probed my thyroid with her fingers, taking great pains to see if she could feel the nodule. Then, I saw Dr. Sher for all of about 2 minutes – no examination, just a reiteration of what Dr. Lee had already told me.

When I explain all this to Dr. Lerner today he says, that’s fine, Dr. Sher’s name would have been one he would have recommended – even over Dr. Asnani – but the last several times he’d tried to refer patients to Dr. Sher, they were turned away with the explanation that he wasn’t accepting any new patients! (The ways of medical scheduling are exceeding strange.)

So, what did Drs. Lee and Sher tell me about my thyroid nodule? That it’s very small (0.8 centimeters), too small to biopsy. They recommended I have another thyroid ultrasound in 6 months, and if it’s bigger than a centimeter, it may be wise to have it biopsied. Even so, they reassured me, I shouldn’t worry about it – only a small percentage of such nodules are malignant, so it’s just a precaution.

Well, I went away from the endocrinology office thinking it’s probably a good thing I’m going through this thyroid stuff after having been through a lymphoma diagnosis, chemo and all the rest – I might have been a nervous wreck, otherwise. My anxiety threshold when it comes to things medical has certainly gotten higher!

Dr. Lerner hands me a script for my next PET/CT scan in early September: time to start the whole cycle again.

Thursday, June 25, 2009

June 25, 2009 - Farrah, Jane and "Let It Be"

News has just come through, today, of the death of actor and model Farrah Fawcett. I wrote about her cancer struggle in my May 16th blog entry. Her television documentary, Farrah’s Story, was a graphic account of the last months of her life.

While the film attracted some negative comments from critics, who branded it as reality-show exploitation, I saw it differently. It seemed to me a courageous (although rough-around-the-edges) statement from a dying woman whose deepest desire was to “not go gentle into that good night.”

Sure, Farrah’s story was hardly typical. She was an enormously wealthy woman with the means to jet all over the world seeking alternative cancer treatments. She was also more vocal than some about the problem of how cancer was affecting her physical beauty (hardly surprising in a woman who, in her prime, was a fashion icon). Yet, whose cancer story is ever typical, anyway? We’re all individuals, and in our respective responses to this disease we each display our own interior beauty.

This morning I walked across the street to St. Mary’s By-the-Sea Episcopal Church to attend the funeral of a neighbor, Jane, who died at mid-life after having been diagnosed about a year ago with a pretty-much untreatable form of cancer. She left behind two teenage daughters and a whole churchful of friends.

Jane designed the funeral service herself, down to every last detail. While it wove in and out of the Book of Common Prayer liturgy, the musical selections and personal testimonies were hardly typical funeral fare. We sang along with the choir to Pete Seeger’s “Turn, Turn, Turn” and listened to a talented guitarist sing the jaunty medley of “Somewhere Over the Rainbow” (as styled by the by the late Hawaiian singer Israel Kamakawiwo’ole) and “What a Wonderful World” that’s been making the rounds of indie singers.

We finished by singing the Beatles’ “Let It Be” – a baby boomer anthem if ever there was one. I’ve always heard the song’s mention of “mother Mary” was inspired by a dream Paul McCartney had of his own mother, whose name was Mary. After checking it out on Wikipedia, I learned his mother died when he was 14, of cancer. As she came to Paul in the dream, he was blessed with an overwhelming feeling of comfort and peace. According to Wikipedia, he later told an interviewer: “It was great to visit with her again. I felt very blessed to have that dream. So that got me writing ‘Let It Be’.” Speaking to another interviewer, he shared how in the dream his mother had comforted him: “It will be all right, just let it be.”

Some have assumed, I know, that “mother Mary” in the song must surely be Mary, the mother of Jesus, but of course that’s not the case. So, it doesn’t make sense, as some have done, to sing it in church as a celebration of that Mary. It turns out, though, in this context, “Let It Be” has a compelling personal (if not exactly liturgical) rightness.

From what I know of Jane – a deep-thinking, highly organized person – it’s likely she knew this story, and included it in the service for that reason. It’s the message she would have wanted her own daughters to take away from the experience of losing their mother:

“And when the night is cloudy,
there is still a light, that shines on me,
shine until tomorrow, let it be.
I wake up to the sound of music, mother Mary comes to me,
speaking words of wisdom, let it be.”

Sunday, June 14, 2009

June 14, 2009 - New Lymphoma Vaccine

I’m feeling hopeful, today, after reading some articles about a new vaccine for follicular lymphoma, recently announced by Dr. Stephen Schuster, of the University of Pennsylvania’s Abramson Cancer Center, at the American Society of Clinical Oncology’s annual meeting in Orlando. One article is a University of Pennsylvania press release, the other an ABC News story.

Dr. Schuster’s study involves a personalized cancer vaccine, fabricated out of the patient’s own malignant cells. Other cancer vaccines are created to go after some factor that influences the survival of cancer cells. This one is different, Dr. Schuster says, because it goes after the cancer itself. The vaccine – or, rather, the process of producing it, since every patient’s version is different – is called BiovaxID.

I suppose it’s kind of like giving a bloodhound an article of clothing belonging to the fugitive being tracked. Having memorized the criminal’s distinctive scent, the hound is able to sniff out the quarry. The cancer vaccine, equipped with chemical markers from the patient’s malignant cells, does much the same thing.

The vaccines, which take 3 months to produce, are given in 5 injections spaced over 6 months.

The vaccine was given to follicular lymphoma patients who had received the standard CHOP chemotherapy treatment (the same one I had, minus the Rituxan), and who had gone into a remission lasting longer than 6 months (mine lasted 8 months). Those patients in the trial who received BiovaxID did significantly better than those in the control group: 44.2 months without a relapse, on the average, for those in the vaccine group, as compared with 30.6 months for those in the control group.

Dr. Schuster is calling for a new clinical trial, to see how the results will come out for those treated with R-CHOP (CHOP + Rituxan), as I was.

I wonder how long it will be before the vaccine is available, outside of clinical trials. I wonder, also, to which patients it would be given: whether only to people like those in the clinical trial, who are still in remission after treatment, or to people like me as well, who are out of remission. (Then again, maybe it could help me after my watching and waiting time is over, and some other treatment puts me back into remission.)

Complicated questions, to be sure. Regardless, news like this is always a source of hope.

Friday, June 12, 2009

June 12, 2009 - Beside the Lake

It’s nearing the end of a remarkable day, for me. After breakfast and a time of worship, our retreat leaders sent us off to find a place to spend two and a half hours in quiet discernment, seeking hints to the leading of the Holy Spirit in our lives. Four days’ work have led up to this point. I have been much occupied in reflecting on various things that have led me to feel spiritually and vocationally stuck. Many of them derive, directly or indirectly, from the way lymphoma has interrupted my life.

Reflecting back, now, on that time of discernment...

I make my way along the path to a large, lakeside picnic pavilion on the conference center grounds. The place, which is evidently where they hold cookouts as well as some wedding receptions, is deserted. Walking across the wooden deck to the railing by the water’s edge, I notice something at my feet. It’s a bird’s nest, with a yellow-and white smear on the planks beside it. Evidently, some prowling carnivore swept the nest down from a rafter overhead, then devoured the frail eggs that had been nestled in it.

Saddened by nature’s carnage, I pull a folding chair to the edge of the dance floor and sit there, looking across the lake.

Skirted by rolling mist, the dark water reflects the tall trees on the opposite shore. Occasionally, a fish breaks the opaque surface. The calling of circling birds reminds me this place is teeming with life.

Taking out my journal, I begin to write a poem that records the way this scene speaks to me, in a way I can only conclude is the leading of the Spirit:


“Look at the birds of the air...” – Matthew 6:26

Bird’s nest
cast on the wooden planks of a picnic pavilion:
Beside it,
a spattered mess of yolk and white:
life’s potential
spilled out
by some anonymous predator.
Life is hard,
far harder than we know
through pampered days;
cruel, too,
and unspeakably random.
So many fruits of careful, loving preparation
cast aside
with one sweep of the predator’s paw,
one feathered flurry of raptor-wings.
And what of the wattle-and-daub sanctuary
of my life, my career (if I may use that un-theological word)?
There is sadness:
immense sadness,
for all the cancer has swept away.
Sometimes I fear my vaunted call to ministry
has become but a smear of yolk and white
upon the deck.

Whose call is it, anyway,
I hasten to remind myself?

Out on the lake,
a man is rowing backwards,
facing towards the prow.
He wants to see where he is going.
Does he not trust the dread discipline
of rowing towards a destination he cannot see,
eyes fixed on the reference point?

Get up.
Get up and walk a spiral labyrinth
upon the dance floor:
a squared-off spiral,
defined by angular symmetry of faux-wood tiles.
on the way in,
Options, one by one,
falling away.
At the center,
a swift turn upon the heel:
scarcely room to breathe.
But then,
but then, the turning.
“To turn, turn will be our delight,
till by turning, turning we come out right.”

What of the ravaged nest?
What of it?
Shall my eye continually be drawn
to such a horror?
What of the bird-mother,
whose eye must have,
one time at least,
been drawn to that appalling sight?
There is birdsong in this place,
to be sure,
but no black-winged mourner,
perched disconsolately upon a rafter.

comes the Sweeper,
broom in hand.
His eye falls upon the downed nest
before he stoops down,
pausing scarcely a moment,
and picks it up in two fingers
before walking solemnly to the rail
and tossing it gently into the lake:
burial at sea.
A squeeze-bottle of pink disinfectant
completes the ritual,
soaking the boards:
chemical absolution.
A few passes of this Undertaker’s broom,
and all that remains
is a wet spot upon the planking.
like the mother bird,
has a way of moving on,
it would seem.
Archangel Janitor paces slowly away,
squeeze-bottle in one hand,
rag in the other.)

Tears wet my eyes
as I recall how many days I have wasted:
days the Lord has made,
intended for rejoicing.
How many pounds of walking burden
have I allowed to gather at my waist?
How many meaningless rectangles of paper –
8½ by 11, and other shapes and sizes –
have I allowed to join the dusty disarray
on my abandoned desktop?
Have I become a bystander to my own, neglected life,
in ways the mother bird
never allowed herself to be?

I sit, davening, upon my folding chair.

“What are you doing here, Elijah?”
“I have been very zealous for the Lord, the God of hosts.”
I have fought the helmeted cancer-hordes to a draw.
(So far, they have not returned,
but for the occasional, ominous scout.)
“I, I alone am left” has been my cry.

The Lord, of course,
would not,
does not
let a true prophet get away
with such an easy answer.

My way back
is serenaded
with birdsong.

Thursday, June 11, 2009

June 11, 2009 - At CREDO

I realize it’s been quite a while since my last post. Life has been more than busy – bordering on overwhelming, at times. Each year, I always underestimate how hectic the month of June is, in parish ministry. June is the month when most church programs make ready to go into hibernation for the summer (yes, even here in a beachfront resort community). There are lots of end-of-the-year special events to occupy a pastor’s time.

Not only that, I’ve been away from home since Monday, at a continuing-education event called CREDO (an acronym for Clergy Reflection Education Discernment Opportunity, which also happens to spell out the Latin word for “I believe” – or, as some have more poetically pondered, “I give my heart to”). The invitation-only program is put on (and heavily subsidized, financially) by the Board of Pensions of the Presbyterian Church (U.S.A.), although they borrowed its design from the Episcopalians, who pioneered this concept of ministry support. We’re meeting at Beaver Hollow, a well-appointed executive conference center in a rustic, woodsy setting near Buffalo, New York.

It’s an unusually long continuing education conference: eight days. It’s kind of a mid-career tune-up for ministers who have been at this work for a long time and who’ve perhaps have not had an opportunity for a while to get away from the daily grind and reflect on the experiences that led us into this line of work in the first place.

It’s a wonderful group of people: gifted men and women from all over the country who are, for the most part, quite good at what they do. The ages range from 40-55. Few of us have ever met before, but the bonding was instantaneous and we’ve been having a great time.

It’s a wholistic sort of approach, focusing on finances, health, spirituality and vocation. Mostly we’ve been listening to presentations so far, with some small group work. Later in the event, there will be some time set aside for writing our personal “CREDO Plan,” a sort of personal to-do list for strengthening our spiritual life and ministry.

I’d like to share something from a CREDO handout on the subject of health. It has a lot to say to cancer survivors, and to everyone else as well:


1. Health means a sufficient absence of injury or disease processes so that my basic functioning operates without impairment (This is the traditional view of health).

2. Health means having an awareness of and reliance upon the life force within each one of us, which makes for growth and in the event of illness, for recuperation (we call it a positive attitude).

3. Health means having a sense that each of us belongs to others, and a desire to contribute to the common good (we call it an other-centered attitude).

4. Health means having an understanding that each of us is more than a product of history; that as individuals, we cannot only cope with the flow of events, but we also participate in shaping them (we are co-creators).

5. Health means interacting with others in such a way that our self-constancy, stability and individuality are not dissolved; even under threat (our egos are intact).

6. Health means having a sense of integrity. That is, we function as a unit and are not self-destructing (we have direction, focus, purpose).

7. Health means having a sense of the value of life and of living as a steward, not an owner (we are optimistic and free because nothing belongs to us individually. We have nothing to lose. We can live sacrificially).

8. Health means having a view of life that acknowledges dependency as a part of reality and rejoices in it; which recognizes gifts, including the gift of God’s love, mercy and ever-present Spirit and gratefully accepts them; which accepts creaturehood, as befits children of God.

9. Health means having an appreciation of living from the aspect of eternity that allows us to find security in the hope and expectation of life everlasting, not everlasting life (We can hang loose through all adversities of life because our perspective is eternal).

10. Health means embracing mystery and ambiguity as welcome friends.

Source: Adapted from Richard P. Ellerbrake’s remarks, Helen J. Westberg Lecture, Sixteenth Annual Westberg Symposium, September 11, 2002.

What I like about this statement is the way it integrates the medical and the spiritual. We need more of that sort of thing.