The Lybbaverse / community  

Medical Log VII – Decision

,

I have finally come to a conclusion on the list of options I mentioned earlier. It was a once-in-a-lifetime high stakes decision. Here were the options:

1. Supportive care, meaning we don't even try to treat the illness.

2. Low dose cytarabine. Dr. Berg says that this option has proven ineffective on patients who have run aground on Vidaza, so the option has been discarded. 

3. Clofarabine - 46% effective. Dr. Berg is quite interested in this possibility. It has a couple of problems – strong side effects and 10% of patients die within 30 days. 

4. Induction chemotherapy. Chemo is used to kill the cancerous blood cells. Unfortunately, it kills many other cells besides. This is the only option that actually has a chance of curing the patient, but at my age, it has a better chance of killing the patient. Molly Williams had two or three rounds of induction chemotherapy before she died, and she was younger than I am now. This option has been dropped.

That leaves supportive care and Clofarabine as the remaining options. The choice has been tough – it's a gamble either way. Here are the statistics on clofarabine. As I said, 10% of patients die in 30 days. 46% achieve a positive response, with an average of 41 weeks life from start of treatment, anywhere from a few weeks to a year and a half. Having a positive response does not exclude disagreeable side effects for at least part of that time. The most common are nausea, vomiting, and diarrhea, but there are many others. That leaves 44% who do not have a positive response, but who do not die either. They get the side effects without the benefit.

I have given a bunch of statistics, but I have no way of factoring in the fact that I have already outlived my prognosis from July 2011: one to one and a half years. Or the fact that on Vidaza, I was one of the 25% who experience no nausea or vomiting. Now, a normal person would take this data, along with the statistics, and ponder it until one decision felt right. I believe it's called “intuition”. That's not me. I immediately sat down and figured my expectation of additional life from clofarabine. It came to 4.3 weeks. For those who do not know the statistical concept of expectation, it is the chance of an occurrence, multiplied by the value of that occurrence. If you have one chance in a million of winning $10,000, then your expectation is one cent.

But what I am really interested in is additional QUALITY weeks of life. Time spent in the hospital, or puking at home, should not count. I could not find any specific information on this. I tried making a series of assumptions before I threw my calculations in the fire. Finally, I began thinking about values. 

I wish I could say that I behaved with resolution and according to the highest values of humanity in making my decision. Actually, I have been irresolute, changing my mind four times before making my decision final. (I am pretty sure none of you are going to be too tough on me for this.) And then, instead of deciding on the basis of values, I only used values as a tie-breaker. My first goal has always been selfish: as much good quality life as possible.

However, in pondering my decision, I found out that values count. Clofarabine is horribly expensive: $28,000 per cycle. What is the morality of spending that much to (possibly) buy a few extra weeks of life for an old guy like me? When we won't even pay for childrens' vaccinations? Let us subject clofarabine to the test of the Golden Rule, or Kant's Categorical Imperative, which are the same. The question: should a person, in a situation where some other entity is paying his medical expenses, choose the option most likely to prolong life, regardless of cost? Well, if everyone does it, that would drive the cost of medical care so high, that eventually even our very wealthy country will not be able to pay for it. But this is arguable.

The second moral yardstick goes back to the ancient world, and first of all Socrates, whom I studied at Exeter. One of his sayings was, “It is not living that matters, but living rightly.” No philosopher should fear death.

When Socrates was on trial for his life, before a jury of fellow Athenians, he said, “No man, of the least value, ought to take into account the risk of life or death when he performs any action, nor should he consider anything other than whether he is acting justly or unjustly, and the part of a good or bad man.”

By now you see which way I am trending. But I was not finished. I was under the gun; if I were to prevent Cancer Care of Maine from ordering the horribly expensive clofarabine, I had to call by the next morning. First I called our friend Phoebe Phelps, a spiritual counselor, and used her as a valuable sounding board. It was getting late, but I could still call the West coast; I called my college friend Ron Epstein, to get the Buddhist perspective. He actually came up with a new thought; for Buddhists, he said, it is important to die in as much of serenity and clarity of mind as possible. Apologetically, he explained that Buddhists believed in reincarnation, and that one's state of mind determined the quality of one's reincarnation. Ron was being apologetic because he knew that I did not believe in reincarnation. But something clicked. I want serenity and clarity of mind at death.

I was able to imagine what clofarabine could do to my clarity of mind. Even if I was lucky, and escaped the side effects, I would be wondering whether to go on to another cycle, whether I made the right decision, and whether I was violating my own values. After talking to Ron, I took a thick black Sharpie, and wrote, “I, Rufus Wanning, hereby and forever renounce the devil and all his works, including clofarabine,” and left it at Margaret's place on the kitchen table.

I expect that transfusions will be keeping me alive from here on out. Maybe a transfusion a week, on average. When you think about it, that's a lot of transfusions. I figure I've given about 40 pints of blood in my lifetime, and I've probably used more than that so far in this illness. So, I would be much obliged if those of you able to give blood would do so. I realize that Red Cross rules on blood donations are so restrictive, most of you will be unable to give blood.

Unavoidably, I have been the focus of these medical logs. But give a thought to Margaret. A couple of weeks ago, when she was showing signs of stress, I realized that my illness was more stressful for her than for me. My first reaction was to say, “What are you worried about. I'm the one who's dying, not you.” But then I realized that if the shoe were on the other foot, I would feel exactly the same way. All I have to worry about is extinction; Margaret has to worry about continuing life alone.

The Art & Science of Noticing: Lybba hosts its first Gather event

,


Photo by Al Kamalizad.

Lybba’s first dinner and conversation experience, held last night in Los Angeles, inspired an evening of insightful and delightful community for 50 cultural influencers who have a steadfast interest in chronic healthcare. The event was part of an ongoing series called Gather.

Featured speakers, Lybba Founder Jesse Dylan and Dr. Peter Margolis of Cincinnati Children’s Hospital Medical Center, in a conversation moderated by Lybba Executive Director David Fore, illuminated transformations in care for pediatric Crohn’s and colitis, as well as for chronic care as an entire system of thought. Discussions centered on the challenges faced by those connecting clinicians, researchers, and patients in a shared system of care, and the potential for expansion of chronic care networks.

The journey of a thousand miles, so goes the proverb, begins with a single step. Those of us involved in transformative-systems work know that one of the first steps to enacting a paradigm shift is to ask individuals to do a simple thing on a large scale: to notice. Our first event was thus entitled The Art & Science of Noticing

Guests were treated to artisanal cocktails; films were screened throughout the evening; giveaways included Lybbaverse magazine, a special edition curated to the theme of the event, and origami lotuses created by Arnold Tubis, lifelong origami artist, physicist, and author of books on paper folding. 

Our hope for Gather is that guests will experience a paradigm shift in awareness about their own health and the system of standard chronic care in the United States.

When we said this was a space, we meant we are people: Antena @ Project Row Houses

,


Project Row Houses (PRH) is a neighborhood-based nonprofit art and cultural organization in Houston’s Northern Third Ward, one of the city’s oldest African-American communities. Since its inception, the campus has grown from the original block and a half to six blocks, and from 22 houses to 40 properties; including twelve artist exhibition and/or residency spaces, seven houses for young mothers, artist residencies, office spaces, a community gallery, a park, low-income residential and commercial spaces.

Here, where the arts converge with a public health practice, is one site where poet-translators Jen Hofer and John Pluecker, founders of Antena Project, a language justice and language experimentation collaborative, create art and multilingual spaces. Writer K. Lorraine Graham shares with us their latest work.

We’re excited by 
Jen Hofer and John Pluecker’s collaborative multimedia chapbook about Antena Project's  installation at Project Row Houses, featured in The Conversant. In their words, the Antena Project “activates links between social justice work and artistic practice by exploring how critical views on language can help us to reimagine and rearticulate the worlds we inhabit.”

To help you make sense of what that means in practice and why it matters, it’s worth reading the history of their collaboration on the Antena website. Hofer and Pluecker, both writers, literary translators and activist interpreters, began working together on 2011 on various projects to instigate multilingual literary events and to support organizations seeking to build multilingual capacity. But the project really took off in 2012:

"2012: With Jen living in Los Angeles and JP living in Houston, we begin conceiving of the Southwestern region of the United States and the Northern region of Mexico as a single/multiple zone of possibility for multilingual artistic and activist work; we continue thinking about and experimenting with methods of long-distance collaboration and semi-autonomous projects under the umbrella of Antena. The vision for Antena grows wider as we include our aesthetic practice within our language justice work.

We make many to-do lists. From March to June, JP installs a temporary bookstore, reading room and language experimentation lab at Houston’s Project Row Houses. Jen visits Antena during its last two weeks at Project Row Houses to spend time in the Antena space, participate in the Read/Write club and other literary events, and to work together with JP to explore potential for further expansion of Antena’s projects."

Their contribution to the The Conversant is part dialog, part documentary, part reading list and part poem. It makes the reader want to revisit the relationship between her own aesthetic and social practices. View and read/see/hear the entire chapbook online.

Reblogged from Harriet with permission of the author.

A dangerous experiment

,

On May 5, 2010, my husband, Jeff Stamps, went to his primary care physician for his annual physical. He had stomach problems, “dyspepsia,” he said. I was skeptical of his self-diagnosis as his skin had turned sallow and he was eating less and less.

Within six hours of that appointment plus a trip to the emergency room, an ultrasound, and a CT scan, we had learned that my always-healthy, athletic, and in-very-good-shape 66-year-old husband of 38 years had Stage IV pancreatic cancer, with metastases to the liver and possibly the lung. Barely 1% of Stage IV pancreatic cancer patients survive beyond five years; most are dead within months.

Jeff lived—and lived well—until June 11, 2011, thirteen months and six days post-diagnosis. Eight weeks before he died he skied black diamond trails on his beloved Cannon Mountain in New Hampshire; three weeks before he died he did a shoulder stand while practicing yoga; the week he died he went for a walk.

His physical strength was one remarkable aspect of his dying; the other was how he embraced his “test.” Here is an excerpt from his memoir, 'A Dangerous Experiment', a phrase taken from Camus’s 'A Happy Death': “To have time was at once the most magnificent and the most dangerous of experiments.”

Jessica Lipnack 

Beginner's Mind

How did I feel when a dear friend told me I was terminal?

Calm.

At the level I have been processing the incoming news about my condition since the ultrasound, I am not surprised, although the time frame is considerably shorter than what I expected. For reasons I cannot fully understand, I seem to move immediately to acceptance.

Acceptance does not seem passive. Rather, it’s an unavoidable reorientation to a new reality. A point of action, I see now, it begins the period of conscious living/conscious dying that I now identify as my Terminal Bardo (a term my friend Jeff invented, taken from the Tibetan concept of the time between death and reincarnation). My calm seems real, but my mind is racing to unpack how I must really feel. Fatal and fast-growing, this is no ordinary diagnosis. This is a once-in-a-lifetime test.

How did I get to the place of acceptance? I wonder where denial and anger are, even as I am soaking in the full awareness of the diagnosis. Familiar for decades with Elisabeth Kubler-Ross’s work on the stages of grief, I test the expected emotional pathways.

Non-denial seems easy. First, I am not expressing denial, or hoping for a lesser charge. No one around me is denying it, no family or friends or medical professionals have expressed mitigating possibilities. Here we are all helped by the clarity of the CT data interpreted by a range of doctors.

For my personal crystallized clarity, I am enormously lucky that the prognosis is provided quickly by a profoundly trusted doctor. Nowhere to hide, a new reality bounds my life. Seeing clearly so early in the process is a gift that spreads from perception of my own condition to more clarity about the world around me.

More surprisingly, there is no anger. I am no stranger to anger, having struggled mightily with it over the years. Here there is no anger. At 66 I don’t feel cheated, robbed of time rightfully mine. Nor do I feel “sentenced” for some misdeed or “punished” for a badly lived life. Besides, I begin to say aloud, no one has suggested that anger helps at all. It is just a waste of time. This no-anger attitude, never complete, persists and has a big effect on my social surrounds and, I believe, a big non-effect on my chemical physiology.

Then there is no bargaining. I accept the terminal parameters. However, within the stage IV context, I will have choices, even if treatment options are limited and in any case are palliative not curative.

Some basic choices seem already made. Yes I will follow treatment to maximize the prognosis, but I will choose with high consideration for the quality of my remaining days. I will aim for a conscious death at home. I will not rush around trying every cure, trying to buy a few more weeks, although I’m open to hearing all options. What I will do is offer my body and the therapies applied the best possible mental attitude for their success.

Depression, too, is largely absent. Intellectually, I understand why it appears in the gap between bargaining and acceptance when the bargain is lost. Often the dying person begins to shut down the social network and retreat into grieving. I find myself opening up to an ever larger network of care—family, friends, people I know only tangentially.

Finally, acceptance, the last stage. I still cannot fully fathom how I am able to reach this point, apparently spontaneously: calm with terminal clarity. Acceptance with no hint of passivity. An acceptance that frees me to live intensely and in the moment while preparing for life’s biggest event beyond birth. This active, every-day-is-precious acceptance also permeates the new culture of intimacy with my nearest and dearest.

Don’t get me wrong. While the stages did not unfold in the prescribed manner, there was and is grieving. Most grieving seems to happen in small groups, and, with respect to me, is largely private. I don’t grieve much at the beginning, in the calm. Later it comes, but then not a lot, given the magnitude of the impending event. It comes and goes.

One other feeling cuts across the stages and then stands nakedly before you upon reaching acceptance. Fear (or not) of death. You can’t fake it, not to yourself, particularly in the quiet moments, or the dark of night. Fear, or its absence, will have an inescapable guiding influence on your inner experience of progress towards death.

For me, blessedly, so far fear has been absent. Anxiety sometimes arises about the unknown, but these are fleeting moments even then. Indeed, all of my old fears regarding that long off distant dying have disappeared, not surprisingly. Most especially I will not die like my estranged father, who at 91, may well out live me, in an assisted-living facility gripped by late-stage Alzheimer’s dementia and depression. Long life is not always wonderful.

I offer an ease with death without fear as a gift. Some say they feel less fear about their own death from my example.

These are the emotional “facts” as best as I can describe the indescribable. These feelings and their absences are all simultaneously present in the early morning light of my “terminal initiation.” Even as I experience “not-denial,” “not-anger,” and “not-bargaining,” I wonder why. Maybe the shock and denial are so massive I am dissociating from reality. Yet the emotional state that comes on in the hospital remains fairly stable as I approach the two-month mark and the beginning of this memoir.

For me, the word that best describes my state is equanimity. 

Whence cometh this state? I do not know, but I hope to understand more through this exploration of my Terminal Bardo.

One in three: a father’s continuing journey with cancer

,

 

On April 19, 1996, my daughter "Sissy" was ripped from her daily routine by cancer. 

Sissy wanted us to return to the meadow on West Ford Valley Road in South Knoxville where she and Danielle had loved to romp with the horses. And so we did.

It is there, in 1998, that I spread Sissy's ashes in accordance with her final wishes.

You see; one evening in July at Brotman Medical Center my beloved Sissy died in my arms.

One thinks that, by such time, one is prepared. And one finds that this is not really so.

The indelibly recursive mental replay of that night does not elude me. Nor will it ever entirely, I suppose.

We gathered not long after at the beautiful, rustic Unitarian Church in Santa Monica to celebrate Sissy's life and grieve together at her passing. Nearly her entire Brotman medical team showed up, including Dr. Mittleman. Most unusual, I am told. Clinicians are thought to jealously guard their requisite, burnout prophylactic, distance.

We placed her urn amid an altar arrangement of flowers next to a favorite picture, her black "Brat" baseball cap cocked atop the golden container.

I had composed a service program and laser-printed it on some specialty paper I found that depicted a lone gull rising in flight toward setting sun--ablaze in orange over the sea. 

I nodded to Jerry, my Brother-in-law who'd flown in from D.C., to stop the disc player. Wearily uncertain that I would be able to sustain my composure, I rose to address the gathering:

Thank you all for coming here today. It means so much to us.

I used to make my living playing jazz guitar, so I'm normally pretty good at improvisation, But I had to write these thoughts out to have any hope whatever of getting through this reflection. Please bear with me if I falter along the way.

A little more than 30 years ago there had been a shortage of parts on God's earthly human assembly line. Consequently, my first-born child came to me as a 6-pound 7-ounce bundle of exuberance missing such key components as a brake pedal, reverse gear, seat belts, warning lights,-- and a mute button.

To complicate matters, the Supreme OEM oversupplied one of her chromosomes with the "Just-Do-It" gene, rendering her congenitally unable to properly interpret the phrase "chill out." Sissy merely assumed it meant that a cold front or the marine layer had just moved in. 

Indeed, for my Sissy, the acronym "DNA" stood for "Do Not Attenuate."

The Good Lord did, however, provide her with a will of stainless steel and a heart of pure gold, as many of us have come to learn.

These celestial pre-natal production line anomalies are perhaps to be forgiven in light of the fact that the day my Sissy came to this world was the very same day Robert F. Kennedy was violently ripped from it by the hand of hatred. My private elation at the arrival of my first offpsring was shortly to be muted by the terrible breaking news that our public spirit had once again been stained with innocent blood.

An unforgettable day, to say the least.

I loved being a Dad-- every aspect of it, even those pertaining to diaper duty and food coming forcefully back my way in unexpected fashion. Three times I have welcomed a newborn into my home and into my heart. Each time I have felt indescribably blessed. 

In 1971 we moved from Seattle to the beautiful rural foothills of the Cascade Mountains of western Washington. One fine summer day that year I anxiously fished Sissy, then 3, out of the small lake that lay just down across the field a few hundred feet from our rented place. While we had been enjoying the lovely afternoon with a group of friends, she had quietly waded right in unnoticed, slipped, and went under.

'Where's Sissy? Oh, my God...' 

My friend Jack turned, looked down at the water, and saw a clump of matted hair just below the surface. We raced in and hoisted her out by the straps of her cut-off coveralls. She surfaced in a flailing, spewing cacophony of panic and indignation. Oh, Dear...

The Just-Do-It gene had become operative and made itself known.

1974 found me thousands of miles from the Pacific Northwest and the children I so loved. In March of that year in Birmingham, Alabama I would meet the woman who shares my soul today. I confessed to her that I had basically made a mess of my personal life, but that I had these two small girls who needed me and whom I could never abandon. I asked her for her friendship, for her love, and for her help.

I did not have to ask a second time.

Last year Sissy asked her for permission to henceforth call her "Mom" instead of "Cheryl."

She did not have to ask a second time.

"Mom," you are simply the best. And Sissy truly came to know that.

In November of 1977 Sissy caught the losing end of an encounter with a can of gasoline and a book of matches. When she was subsequently released from the hospital burn unit after 2 1/2 months of pure hell, she prompted mounted a friend's horse that immediately took off and catapulted her directly into a barbed-wire fence, ripping up her scarred, barely healed armpit.

Well, straight back to the ER for a bit of suturing. The Just-Do-It gene had expressed itself again. No big deal, Dad.

A cold, clear Smoky Mountain stream courses down out of the Appalachians through Townsend, Tennessee. Just below the juncture of its cascading tributaries at the edge of the National Park is a favorite swimming hole hangout for locals escaping the oppressive summer heat and humidity. A jagged cliff looms above a deep pool just downstream from an adjacent section of whitewater.

We called it "The Y." Most of us who partook of the plunge climbed slowly and ever-so-cautiously up the wet rocks to the ledge most frequently used for cannonballing down to the frigid water below.

But, a second, significantly higher promontory lay at the end of a sharply descending dirt path that began in the trees even further up the cliffside. A small cadre of adolescent boys in ragged cut-offs would queue up at the top of the path. They then careened recklessly down the short trail one by one -- some after considerable hesitation --, launching themselves headlong and howling toward the small target of emerald-blue ripples below.

This testosterone tribe of hillbilly cliff-divers was joined on many a hot summer day by a gawky female peer with big hair and a burn-scarred right arm and side.

Sissy admitted to me that it scared the stew of out her, but that she had to just do it anyway.

In early 1985 the Just-Do-It gene struck yet again. As I wrote in an earlier essay:

She'd been at a raucous party of dubious propriety and had reflexively exited what she'd assumed to be a street-level back window after the police arrived in response to a noise complaint.

There was one slight problem: a concrete sidewalk awaited three floors below.

'Hello? Robert Gladd? Father of one Cheryl Lynn Gladd? Sir, this is the Emergency Room Attending physician... We need your telephone permission to treat your daughter for multiple injuries sustained in a fall...'

Ahhh...the joys of parenthood.

Later that year Sissy decided that she'd had quite enough of her parents' beloved and boring provincial little backwater of East Tennessee. She moved to Texas, first to Arlington, then on to San Antonio. Subsequent years would find her in Pensacola and Jacksonville, Florida, Atlanta, San Diego, Hawaii, Newport Beach, and finally, Hollywood.

Cheryl and I have sifted through hundreds if not thousands of Sissy's photographs. While we continue to grieve at her too-soon departure and the truncation of her dreams, we cannot but be struck by and comforted by the amount of vibrant, Just-Do-It living she managed to cram into her 30 years, and the huge number of friends with whom she shared her energy and spirit. Tellingly, in all of these innumerable snapshots we have found only two or three in which she was not either smiling or laughing uproariously.

Excerpted from the Wren Foundation with permission of the author.