Help With A Critical Endeavor: Providing Meaningful Comfort to the Sick and Dying

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Image courtesy of flickr.com

I have been fortunate to connect with Abigail Johnston, a dynamic woman who has selected a title for her blog that’s a perfect description of her and her mission: “No Half Measures: Living Out Loud With Metastatic Breast Cancer.”

Faced with a daunting diagnosis that could crush many of us, Abigail has instead seized the time she has to become a patient advocate and educator. While she’s unsparing in her descriptions of her own and others’ ordeals–often worsened by bureaucratic entanglements and seemingly uncaring (possibly burned-out) professionals–her posts are marked by humor, a sense of the absurd, compassion, and practical suggestions. They are life-affirming.

I am pasting her most recent post, “Ring Theory,” below because its approach to communicating with seriously ill people–and their loved ones–provides information that I think we all need. And, when we eventually find ourselves in the center of the ring, I believe we will all hope that those around us are similarly well-informed.

Ring Theory

[From the blog No Half Measures: Living Out Loud With Metastatic Breast Cancer, by Abigail Johnston.]

I ran across this theory early on in my experience with Stage IV Metastatic Breast Cancer and it really resonated with me. The longer I’ve lived with the disease, the more it resonates with me. While I’m horrible at asking for help and often overestimate what I can handle, the kindness of some family and friends has driven home how important this idea really is.

Actually it’s probably more the actions of some family and friends who have not shown kindness that has really driven home how important this concept is to those of us who are dealing with a health crisis.

I’ve included a link below to the full explanation of the theory, but here are the basic tenets, paraphrased from Silk and Goodman:

1. Draw a circle. In this circle, write the name of the person at the center of the Health crisis.
2. Now draw a larger circle around the first one. In this ring, put the name of the person next closest to the crisis.
3. In each larger ring, put the next closest people. As Silk and Goodman state, “Parents and children before more distant relatives. Intimate friends in smaller rings, less intimate friends in larger ones. . . When you are done, you have a Kvetching Order.

A pictorial representation may help:

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The basic idea is that the person in the middle does not receive the venting/kvetching from outer circles, especially when said venting is about the person in need of help.

For example, if you are a family member of a terminally ill patient who spends the night in the hospital with your dying family member, you don’t then get to complain to that dying family member about how that night away from your family was stressful for you or how others in the family did or didn’t communicate nicely when arranging for someone to spend the night.

Why?

This theory takes into consideration that the person who is dying is carrying a much heavier psychological load than anyone else and that close family is affected more than distant relatives or acquaintances.

In essence, this theory is how to demonstrate love in a clear and understandable way. Violating this idea creates more and more angst and damage to the person who is already carrying more than a healthy person ever could understand.

Why would someone who loves a dying person want to cause further damage?

Here’s an article that lays out the ring theory in much more detail for anyone who is interested in learning more.

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I hope after you’ve read Abigail’s post, You’ll also read the Psychology Today article about the Ring Theory to which she links, and the original LA Times Op-Ed by the authors, Silk and Goodman. The Psychology Today article includes some practical suggestions that are extremely helpful.

Please don’t let yourselves be put off by the rough-hewn drawing; this material is more than worth the few minutes it will take you to read through it all.

Annie

 

 

 

Reading My Friend Peter’s SNAFU Letter at Christmas Time

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Training Rats to Save Lives Apopo.org

I’m not terribly fond of Christmas letters, which sometimes resemble those Facebook entries in which people tell you all the details of their day, including every morsel they ingested.

But there was one letter I always looked forward to receiving. It was from my friend Peter, my colleague at the continuing medical education company that was my last job before retirement.

Technically, I was Peter’s “boss,” a word I loathed, as I really believed in a collaborative work environment. But with Peter, it was irrelevant: he needed no bossing. 

Though his position was medical editor, he possessed two masters degrees and a PhD. It was our/my great good fortune that he wound up in that office. He was brilliant.

In terms of his work, that meant not simply meticulousness about spelling, grammar, punctuation, organization—even style. He would find errors in physicians’ manuscripts and illogical conclusions in published journal articles.

And he would rewrite passages of the manuscripts we were preparing that wouldn’t otherwise pass muster. Oh, how he could write!

He also had a very offbeat, sardonic, often hilarious wit with an eye for life’s absurdities that others might miss.

And his restless intellect encompassed such varied interests—many different types of music, especially opera (the more obscure, the better), good films, politics, travel, and on and on—that his Christmas letters were a joy to read.

The absurdities parts were often featured prominently. I loved them.

At some point a number of years ago, Peter developed a dry cough. His doctors treated his symptoms, but they lingered.

After several weeks, he told me he was having night sweats. That set up a warning light for me, and I asked him if I could check with a physician friend. She led him to the oncologist who diagnosed a rare T-cell lymphoma. The prognosis wasn’t great.

But Peter had a strong will to live, and he beat those odds. We celebrated his five-year survival.

In his Christmas letters, he wrote about all the medical indignities and horrors he’d been subjected to with an astonishing degree of humor and objectivity—and not an ounce of self-pity.

A few years later, the company we worked for was failing, and I was required to lay off Peter and several other terrific people. I wept; Peter was visibly upset, and I worried that he’d never forgive me.

But he did, and my husband and I attended several of his delightful home musicales/dessert parties, where he and some friends, accompanied on the piano by his very charming and talented music teacher wife, regaled us with songs. He had a fine tenor voice.

Then came a SNAFU Christmas letter, explaining in a matter-of-fact tone that the lymphoma had returned, and treatment had once again commenced.

This was 11 years after his first occurrence. We had all been so sure it was a horror that he’d never again have to face.

After that, Peter’s SNAFU letters weren’t just at Christmas. He began regularly describing his strange new journey—always with humor, always with a sense of the absurd, and—once again—always without self-pity.

He went through hell, but he never dwelled on all that.

His last missive was dated October 20. It was longer than usual because the process to prepare him for stem cell transplantation had begun.

He knew the odds were not in his favor, and he knew what he was facing, but his incredibly strong desire for life overrode all else. 

He titled the email “SNAFU Sequel: A Million.” The million referred to the first count of his harvested cells. But “a million cells is not like a million dollars,” he wrote.

“Ideally, a transplant for T-cell lymphoma requires 6 to 10 million stem cells.”

The last amount he documented was a harvest of 2.8 million cells, and it was increasing.

Despite his situation, he found silliness everywhere. Told in the hospital to go to room 318 for an MRI, he walked through a long dark corridor where there were no rooms.  Suddenly the hall ended and became room 318,

“and there we entered a new dimension…The room and atmosphere reminded me of the creepy opening hotel lobby scene from Stanley Kubrick’s The Shining. The MRI was uneventful.”

He continued:

“As with Stalin’s 5-Year Plans, the pace of my medical procedures accelerated as I got closer to a transplant date.

“On Monday (the 14th), we had to be in at 6:30 AM for a procedure to insert a central venous catheter with 3 lumens (the proprietary name is Trifusion, but I call it King Ghidorah, after the ludicrous 3-headed Japanese movie monster that appears to shoot arcs from Tesla coils) to facilitate the harvesting of stem cells…

“At 10:30, I was instructed to have blood work, and then we had to wait until 6 PM to get an injection of Mozobil, which is designed to promote the creation of stem cells (it is very expensive, so the pharmacy only makes it at 6, and only if the patient is present).

“That left 7 hours to sit in the hospital to get a single injection. I decided to play a literature game, inspired by Woody Allen’s film Love and Death, in which 2 characters converse using Dostoevsky novel titles (e.g., ‘They say he was Possessed.’ ‘No, he was an Idiot.’).

“As a patient and medical editor, I have dealt with absurd drug titles that lend themselves to bad literature. With apologies to Sophocles, here is my one and only Greek tragedy (those not in medical education may want to skip this section).”

[Note from Annie: All the names below refer to medications or medical procedures; I’m assuming Peter had endured each one.]

“In the city-state of Amlodipine, known for its high level of education and culture, King Azacitidine and Queen Romidepsin rejoiced at the birth of their son, Granix. According to custom, they brought the child to the Temple of Invokana. 

“They were alarmed when the high priestess Apheresis prophesied that Granix was destined by the gods to be the worst playwright in history. 

“They tried to avoid the prophecy (not recommended in these plays) by sheltering their son and home-schooling him. 

“When they died, he was unaware of the prophecy until the soothsayer Carmustine revealed the curse. Terrified, Granix changed his name to Zarxio and fled into exile.

“He decided to avoid his fate by settling in the city of Thiazolidinedione, whose ruler, King Actos, forbade all education and culture. 

“Soon, however, the city was besieged by the dreaded monster Mozobil, who tormented the population with riddles such as ‘How do you spell your city’s name?’ ‘Is the word ‘data’ singular or plural?’ ‘Is ‘health care’ one word or two?’ In desperation, King Actos issued a proclamation for anyone to rid the city of the monster. 

“Displaying his hubris, Zarxio stepped forward and answered all the riddles, and then drove Mozobil away by challenging him to explain why ‘nonadherent’ did not have a hyphen. Instead of gratitude, King Actos wondered why Zarxio knew so much, in a city where being educated was a crime. 

“Eventually, Etoposide of Amlodipine, who had been searching for Granix, heard about Zarxio’s exploits. Etoposide explained that Zarxio is an alternate form of Granix, unmasking the criminal. 

“For defying the will of the gods, Granix was banished to the realm of Polypharmacy, where, in a drug-induced stupor, he churned out the worst plays of all time.

“The moral: It is better to play with your cell phone than to try to write a Greek drama.“ 

Peter provided considerably more detail about what he was experiencing, and then wrote:

“Now for the reason this is such a long SNAFU. The current plan is for me to enter the hospital next Tuesday or Wednesday… In order to ensure the complete response, for 6 days I will receive a very strong chemotherapy called BEAM…, which is associated with serious adverse effects.

“ If nothing else, my multiple regimens (Hyper-CVAD, CHOP, ICE, clinical trial, and soon BEAM) will make me a connoisseur of chemotherapy.

“After 1 day off, I will have the transplant and continue to stay in the hospital for about a month. The SNAFU Sequel will be on hiatus.

“I am sure that when I return there will be numerous hilarious episodes to recount. With a recovery period that may last a year, the SNAFU Sequel will inevitably become a tome.”

He then observed:

“The hospital neighborhood, which I have noted is a nightmare of construction vehicles, iron plates, and gridlock, has a few surprising areas of calm as well.

“Across the street is an armory where I ran track while in high school, providing me with an unintentional foundation for surviving lymphoma. 

“One block west, the traffic noise cannot be heard.

“Instead, you see a veritable United Nations of medical students with their youthful exuberance, quizzing each other and giving one some confidence in the future, as opposed to our political situation. 

[Here he expressed his profound gratitude and love for his wife and appreciation for his friends—and then became philosophical]

“The Tao Te Ching, perhaps by Lao Tzu (Laozi), contains an often misquoted statement, with the true meaning close to ‘The journey of a thousand begins beneath one’s feet’ (obviously, they did not measure distance in miles 2,500 years ago). 

“However, my own path has comprised many paths. A better way to sum up my treatment journey is a quote from the Pirkei Avot, compiled about 2,000 years ago:

“‘You are not obligated to complete the work, but neither are you free to desist from it.’

“So off I go to the big city, with Kander and Ebb’s ‘New York, New York’ ringing in my ears.”

……………………….

At his wife’s suggestion, I had planned a phone call with Peter shortly and a visit once he was out of isolation. Peter died on November 19 at age 65. He left his body to science.

His wife referred to him as her “brave warrior.” Though he was a peace and social justice advocate, her words seem apt in terms of how valiantly he fought to remain on this earth.

I learned many things from Peter, and one of them was the extraordinary intelligence of rats. Yes, rats.

Peter requested that anyone who wanted to make a contribution in his memory send it to Apopo, a non-profit organization that trains African giant pouched rats to save the lives and limbs of children and others by detecting landmines that are buried in more than 60 countries that had been at war. The rats can also detect tuberculosis, which is often otherwise undiagnosed and therefore deadly. Thus, they are called HeroRATS.

I’ll end this post by borrowing Peter’s typically Peter closing. I find its generosity of spirit, in view of his own circumstances when he uttered these words, nothing short of remarkable.

“I hope you all have wonderful times and holidays ahead. Remember to laugh!”

Annie

“I Thought of Her as Leonardo da Vinci’s Descendant”

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I’ve found, on occasion, that some of the most life-affirming experiences I’ve had have occurred at a funeral or memorial service for someone whose life has been well-lived.

I had that honor today (Sunday), attending a memorial for a 92-year-old woman whose friends’ recollections often included the phrase “Renaissance woman.”

The woman being memorialized was not someone I’d known for many years or been extremely close to. I had actually been introduced to her by a mutual friend who knew her much better. But she had such a warm, enveloping nature that I felt our friendship was longer and deeper. That, in itself, is a gift, but this woman’s gifts were bountiful.

Her energy level was one. We belonged to the same gym, and I would see her, when she was well into her 80’s, scrambling up climbing devices and lifting her small frame in successive pull-ups—a strenuous task that requires using one’s full body weight.

One of today’s participants whom I hadn’t expected to see was the terrific personal trainer my husband and I work with once a week. “Pat was one of my clients,” he told me. “She came to me in her 80’s because she wanted to be able to go back to canoeing.”

He’d put her on the treadmill wearing a backpack, and she’d complain, “It’s too light; I need more weight.” He’d add 10 pounds, then 20, then…And before long, she’d returned to her canoeing, even carrying the canoe when necessary.

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“Pat was an adventurer with a particular love of the outdoors, canoeing, and camping,” read her obituary. She traveled widely, and one of her two daughters recalled a canoe trip when she was no longer strong enough to paddle.

With her daughter at the stern, they found themselves heading toward whitewater. “I thought, ‘Oh, my God! I’m going to kill my mother!’” the daughter said. “But she just laughed and laughed, having the best time.”

She was a PhD psychologist who’d had a private practice for many years. Her own life was not easy. There were suggestions of a stormy relationship with a difficult, demanding mother. There was a happy marriage that ended too soon with the death of her spouse, followed by a marriage ending in divorce. There were many health challenges. But still, as one friend, a fellow therapist, said: “She was always a glass half-full person. And she knew when she needed to talk to someone, and she found the best person to talk to.”

When she retired at age 62, she hooked up with Habitat for Humanity, the non-profit organization that builds homes for people in need. This wasn’t her first experience with hammer and nails: she’d been one of the first women to teach shop in a public school in the Bronx, New York. A natural organizer, she brought together fellow Habitat volunteers in her home—a group subsequently called “The GreyHeads.”

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As she told a regional reporter who wrote an article about the group, “My work with Habitat has been the most important experience of my life. I love working with tools and building houses. Every minute is a total joy, and walking through a finished house is the closest I’ve ever come to a religious experience.”

A number of the Greyheads spoke about Pat at today’s gathering. It was clear not only that they cherished and respected her, but also that the presence among them of this tough, small, and tenacious woman had profoundly affected their views of women’s roles and capabilities.

And the hands that hammered and sawed also fashioned delicate, beautiful sculptures made of clay, stone, and bronze. Many were nudes—some more sensuous than others. One of the Greyheads said that, raised as a good Catholic boy, when he first saw her sculptures, he headed to confession. “They were better than those magazines,” he said with a big smile.

images-34What else did those incredibly versatile hands do? They played the piano and harpsichord, and the organizer brought together like-minded musicians for Friday evening musicales in her home. She was known to play with passion, and she was especially fond of baroque compositions. “I knew never to call Mom on Friday nights,” her daughter said.

Is it any wonder that one of the speakers said he always thought of her as a descendant of Leonardo da Vinci’s?

She was also deeply concerned about both her community and the larger world. She marched for civil rights, worked to make the playgrounds in New York’s Central Park safer, and sought to obtain an emergency alert system in her home town following the devastation of Hurricane Sandy.

A few years ago, when it became evident that she could no longer remain in the house and town she loved, she moved to an independent living community near one of her daughters. For a while, she was deeply unhappy, finding little to occupy her time and few like-minded people to talk with.

But in true Pat fashion, that funk didn’t last for long. As one speaker said, when asked what had made her spirits brighten, she responded: “I went to the lumber yard.” Soon she had translated her Habitat for Humanity experience to make Habitats for Wild Birdity: she organized a group to make little birdhouses to hang around her new environs. This action was totally in keeping with yet another aspect of her nature: her love for animals.

When we visited her, her sculptures were in various stages of completion, and she pointed with pleasure at the small garden outside her residence. Before long, we heard about several gentlemen who were vying for her attention. Eventually, her glass seemed more than half-full.

Listening to all the tributes today, I felt as I had when I’d heard her health was failing: regret that I hadn’t had the opportunity to know Pat better and longer. But I felt even more strongly a sense of gratitude that I had been able to spend time with and appreciate this diminutive but huge, indomitable and loving, and truly remarkable woman.

As always, please let me know your thoughts and reactions, and share any stories of your own that this post brings to mind.

Annie