In Recognition of Breast Cancer Awareness Month (With a Big Assist From a Dynamo Fellow Blogger)

Not the usual pink ribbon, explained below. Image courtesy of METAvivor.

My mother had bilateral mastectomies—five years apart. I vividly recall that shortly after she was first diagnosed, she called me into her room to show me the spot on her breast: no discernible lump—just a horizontal line masking the cancerous cells below. She wanted to alert me in case I ever saw something similar on my own body.

She/we were lucky: after the distressing surgeries, she needed no follow-up treatment and died at age 83 of heart failure.

Many women—and some men—are not so lucky. As October 1-31 has been deemed “Breast Cancer Awareness Month,” it seems to be a good time to discuss the disease that, after skin cancer,  remains the most common cancer among women, affecting 1 in 8 in the US and hundreds of thousands worldwide. 

And I have recently become aware of what life is like for women—including some very young women—living with metastatic breast cancer (MBC). I’m hoping to provide some insights into this aspect of the disease: it doesn’t get as much attention as what my mother had, which a surgeon at the time called “garden variety breast cancer.”

A Bit of Background

The CDC reports that about 250,000 women and 2,300 men are diagnosed with breast cancer in the US each year. Non-Hispanic white women are most often diagnosed, with Black women not far behind.

However, as is too often the case, Black women are more likely to die of the disease, and it is the leading cause of death among Hispanic women. 

Diagnosis most frequently occurs in women in their 70s, and deaths are highest in women in their 80s. But 11% of women diagnosed with breast cancer are under age 50.

There has been a gradual reduction in the incidence in women over 50, according to the National Breast Cancer Foundation, possibly due to less use of hormone replacement therapy. 

And a reduction in breast cancer deaths since 1990 has been documented, attributed to screening, early detection, and better treatment options, as researchers learn more about the nature of the various molecular and cell distinctions among breast cancer manifestations.

But a recent study found that the decline seemed to have slowed in the decade from 2008 to 2017.

Learning From Abigail

None of this information comes close to revealing what it’s like to be a much younger person living with metastatic breast cancer (MBC). I have learned a great deal about that particular hell from my treasured virtual friend Abigail Johnston, whose blog is titled “No Half Measures: Living Out Loud.” 

Abigail was diagnosed with Stage IV MBC in 2017 at age 38. She was originally believed to have Stage II disease and was told that it could be managed and wouldn’t kill her. 

When it was discovered that the cancer had spread to her bones before she’d even felt the lump in her breast, she received the Stage IV diagnosis, which is invariably fatal. Her two sons were not quite 2 and 4 at the time. She was informed that she had about three years to live, but fortunately recently passed that point. 

Those of us who follow her blog rejoice with her when she receives encouraging test results and share her dismay when she suffers from treatment “side effucks” and medical personnel outrages. She is an easy person to admire and love.

Dynamo that she is, she keeps a rigorous schedule as an advocate for patients, an educator for both patients and the public, and a voice for those who are less willing or able to express the many sorrows, indignities, anxieties, fears, and needs that add extra burden to those with this dreadful disease. 

Her blog posts are far-ranging and informative, inspirational, sometimes funny, always worth reading.

A former attorney, she founded a non-profit, Connect IV Legal Services, to put Stage IV MBC patients in touch with attorneys who will help them pro bono with financial/legal matters they may face. 

The list of her organizational activities is long, and includes serving as a board member and a Parliamentarian for her local PTA.

From Abigail’s Daily Blog Posts

Since the October 1 beginning of Breast Cancer Awareness Month (BCAM), Abigail has been blogging daily or sharing posts from others about aspects of being a member of that club no one voluntarily joins—but which has, in fact, given life to a support community of women and men similarly affected that is remarkable in its depth, compassion, and dedication—and she is one of the reasons.

I’m including below some of the items gleaned from these posts.

Of particular note, October 13th was the only day of this “awareness” month dedicated to the more than 155,000 women and men who have metastatic breast cancer. 

Abigail wrote a powerful essay about what it feels like to be: 

“…the elephant in the room…By being vocal, we make lots of people uncomfortable. By asking that someone pay attention, we force others to be reminded of their own mortality.”

Though she understands the sentiment that leads people to “want to categorize breast cancer as ‘the easy cancer’” because MBC shows “the dark side,” she is simply asking for understanding…

“that this is my life, that MBC is real and it is entirely different from the other stages. That it WILL kill me. I won’t die of old age, I will die because of breast cancer.”

Since Abigail doesn’t live by half measures, her time on October 13th involved various public activities, including being featured in a live Zoom presentation, “Living With Breast Cancer—One Woman’s Story,” in which she spoke about “living with purpose” and shared information about research she’s learning with regard to mutations. That was from 7 to 8 pm.

After that, she appeared with friends and family at landmarks in Miami, near her home, that were lit up to raise awareness of MBC. This #LightupMBC campaign is an effort by METAvivor—an organization devoted to “metastatic breast cancer research, support, and awareness”—in conjunction with http:moorefightmoorestrong.com, an organization named after a young woman named Jessica Moore who was diagnosed at age 32 and died four years later. (Regrettably, the link doesn’t work.)

Landmarks in every US state and elsewhere in the world were lit up in green, teal, and pink to call attention to the too-often-overlooked women and men with MBC. 

“Why Green, Pink, and Teal?”

The explanation is on the moorefightmoorestrong site, and it gets to a serious issue that’s been overlooked in the “pinkwashing” of the breast cancer campaigns most of us have become accustomed to seeing.

“The pink ribbon is well-known for representing the fight against breast cancer, but most of MBC patients feel that pink does not encapsulate their experience. Metastatic Breast Cancer may start in the breast, but its spread to vital organs makes the disease fatal. 

“To highlight the uniqueness of the disease and show its commonality with other Stage IV cancers, METAvivor designed a base ribbon of green and teal to represent metastasis. Green represents the triumph of spring over winter, life over death, and symbolizes renewal, hope, and immortality while teal symbolizes healing and spirituality. The thin pink ribbon overlay signifies the metastatic cancer originated in the breast.”

Abigail provided her strong opinions about that “pinkwashing” in her October 1 blog post, questioning why the people who are dying get only one day’s attention during this month–and only 7-10% of the research funding.

“In my view, we should apply the principles of triage…—focus on those of us who are dying at a median rate of 2-3 years post-diagnosis rather than those who are at least 70% likely to end treatment and live a ‘normal’ life.”

“And yet, the focus is on those who’ve triumphed over the ‘easy’ cancer and touting the ‘easy’ testing (i.e., mammograms), which don’t even detect much/enough of the disease that murders my friends daily.

“Secondly, the pink ribbon is EVERYWHERE. On bananas, on yogurt, on beauty supplies, shirts, stamps, etc. 

“Yet, if one queries those companies about how pasting that ribbon on everything helps those of us with breast cancer, the answer is usually extremely minimal, if at all. There are exceptions, but the usual answer I receive is pennies to selected charities for every dollar spent. 

“Then those same charities often use the majority of those funds in administrative costs like salaries and “educational” campaigns, meaning very very very little gets to actual research funding, which again, is allocated to MBC at the rate of 7-10%.

“Also, many of the products that boast a pink ribbon actually are or contain elements that CAUSE CANCER.”

Abigail recommends that anyone who’s tempted to purchase a pink breast cancer symbol first query the retailer about how that money will be spent.

Other Items I’ve Learned From Abigail’s Series

The SEER database (Surveillance, Epidemiology, and End Results Program—-seer.cancer.gov) doesn’t count people with MBC accurately, Abigail says, so although it’s known that roughly 115 women and men die from MBC daily, it isn’t known how many are diagnosed.

“Whenever you see a notification that someone has died from breast cancer, the actual terminology should be ‘metastatic breast cancer’ or ‘ramifications of the treatment of metastatic breast cancer.’ The media gets this wrong over and over and over.

“Why is this important?

“Just like we don’t get counted correctly, the public is unaware of how fatal MBC really is, how many people are dying of it every day, and the focus of BCAM needs to be awareness about MBC. Yes, I know it’s important to do self exams and mammograms are good too; yet, none of that can prevent a person from developing MBC and MBC is 100% fatal.”

Another valuable piece of information involves participation in clinical trials.

It had been assumed that numbers of participants were low because people were reluctant to join trials. But The Fred Hutchinson Cancer Research Center did a study that pointed to another reason: of 9000 cancer patients in their study, more than half didn’t have a trial available to them. When trials were available, about half of those in the study did, in fact, participate.

[The National Breast Cancer Foundation Inc. website has a search tool in which anyone interested can fill out specifics about her/himself and be directed to available clinical trials.]

Abigail’s blog is filled with information like this, which is valuable for us all to know. Equally important, she offers insights into the personal and social needs that caring people can meet to truly help those affected in their daily lives, including even some advice about vocabulary.

“Language matters,” she writes, and then quotes a young woman named Adiba: 

“Let’s talk Battle terminology. You always hear ‘She fought bravely…lost her battle to cancer, etc.’ Fact is most of us MBC patients actually hate hearing that as it makes us feel like failures. Like it’s our fault that treatment stopped working.”

Abigail recommends (emphasis mine):

“Before you use the same fight terminology that has become and stayed ‘mainstream,’ ask how the person with cancer is doing. Don’t take it on yourself to be a cheerleader or give them answers or solve any problems, just sit with them. LISTEN. And then listen some more. Less is more. Much less, please.”

Abigail’s posts are on her blog and also on the Connect IV website. They are always worth reading—whether you have breast cancer, care for someone who does, or simply care about making research inroads so that fewer and fewer people suffer and die too soon.

If You’d Like to Donate to Research and/or Services

 Abigail suggests:

www.metavivor.org

305PinkPack

Connect IV Legal Services

…or a reputable charity of your choice. Check Charity Navigator for 4-star rated charities.

Annie

Continue reading “In Recognition of Breast Cancer Awareness Month (With a Big Assist From a Dynamo Fellow Blogger)”

In the Presence of John Lewis…

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President Obama presents Congressman John Lewis with Presidential Medal of Freedom. Image commons.wikimedia.org

Last night, Georgia Congressman John Lewis, one of my personal heroes, died of pancreatic cancer at the age of 80.

It was four years ago that I attended a political rally in a church in a neighboring community. Congressman Lewis had come to town to try to help a younger candidate win a seat to join him in the House of Representatives.

The church was packed with a heartwarmingly diverse crowd: all variations on the color spectrum, differing faiths or no faith, young and old, men and women.

I was thrilled to be so close to Lewis. Ever since seeing the video of the brutal beating he’d received on the Edmund Pettus Bridge in Selma, Alabama, which left him with a fractured skull but a resilient spirit, he’s been my ideal of the finest and bravest of Americans. He adhered to his belief and practice of nonviolence throughout his lifetime. 

That beating by state troopers in riot gear became known as “Bloody Sunday.” The images of the attacks led to the passage of the Voting Rights Act, which President Lyndon Johnson signed into law shortly thereafter. 

Lewis’s long and storied history as a leader in the civil rights movement began with lunch counter sit-ins that ultimately succeeded in desegregating public facilities in Nashville. That was the beginning. But the first time he was arrested, his family was ashamed, as they’d taught him “don’t get into trouble.”

However, once he’d met with Dr Martin Luther King and Rosa Parks, he knew what he had to do. He had to “get into trouble, good trouble, necessary trouble.” He paid a high personal price for that trouble, but his impact was huge.

It wasn’t just his bravery. It was his humility and generosity of spirit. To some, his willingness to forgive was unfathomable. 

Writes Michael Fletcher in The Undefeated:

“My apprehension was rooted in the mistaken notion that Lewis was not angry enough. Why did he not demand revenge for the unspeakable racism he fearlessly confronted? How could he accept an apology from former Alabama governor George Wallace, a longtime segregationist who ordered the infamous Bloody Sunday attack on the bridge? Or forgive the pathological Bull Connor, the former public safety commissioner in Birmingham, Alabama? 

“Why would he forge a relationship with former Klansman Elwin Wilson, who was part of a mob that in 1961 beat down Lewis and other Freedom Riders outside the whites-only waiting room at the Rock Hill, South Carolina, bus station?

“But over the years my ambivalence melted into reverence as I came to better appreciate the power of Lewis’ grace. It armed him with undeniable moral authority that allowed him to change minds, and hearts. His willingness to forgive, along with his bravery and contempt for injustice were among the sturdiest pillars of his greatness.

“Wilson apologized to Lewis years after his crimes and sought to atone for them. Lewis accepted his apology, went on television with the former Klansman and even hosted him at his congressional office. After Wilson died in 2013, Lewis reflected kindly on his example.

‘Elwin Wilson shows us that people can change,’ Lewis said. ‘And when they put down the mechanisms of division and separation to pick up the tools of reconciliation, they can help build a greater sense of community in our society, even between the most unlikely people.”

Lewis had received similar vindication when he’d returned to Selma on the anniversary of Bloody Sunday in 1998, as he had every year. Selma’s mayor, Joseph T. Smitherman, who had been mayor when the attack occurred in 1965, gave Lewis a key to the city. 

Said Smitherman:

“Back then, I called him an outside rabble-rouser. Today I call him one of the most courageous people I’ve ever met.”

In his years in Congress, Lewis became known as the “conscience of the Congress.” He worked to create what Dr Martin Luther King had called “a beloved community”—a world free of racism, poverty, and war. He was identified with healthcare reform, justice, voting rights, immigration, and gun control.  

Another indelible image I have of him followed the mass shooting in an Orlando, Florida night club in 2016. To protest Congressional inaction after yet another gun massacre, he led a sit-in among Democratic members of Congress on the floor of the House of Representatives.

When we eventually do get the sensible gun legislation that the majority of Americans want, I hope it will bear his name. And I’m fairly sure that the Edmund Pettus Bridge in Selma will soon be renamed in his honor.

Lewis was gratified by the global demonstrations that followed the killing of George Floyd in May. He viewed the diverse actions against systemic racism as “a continuation of his life’s work,” reported The New York Times (which is the source of several items in this post).

He told an interviewer from CBS This Morning that:

“It was very moving, very moving to see hundreds of thousands of people from all over America and around the world take to the streets—to speak up, to speak out, to get into what I call ‘good trouble.’ This feels and looks so different. It is so much more massive and all inclusive. There will be no turning back.”

In President Obama’s remarks on Lewis’s death, he wrote that when they’d last spoken after the demonstrations,

“I told him that all those young people — of every race, from every background and gender and sexual orientation — they were his children. They had learned from his example, even if they didn’t know it. They had understood through him what American citizenship requires, even if they had heard of his courage only through history books. 

“Not many of us get to live to see our own legacy play out in such a meaningful, remarkable way. John Lewis did. And thanks to him, we now all have our marching orders — to keep believing in the possibility of remaking this country we love until it lives up to its full promise.”

In the church where I heard him speak four years ago, Lewis described his early life as the son of sharecroppers. He told us he’d gotten his start preaching to the chickens outside his modest home. He minced no words in describing the horrors he’d been subjected to as a young peaceful demonstrator. He made us smile, he made us laugh, he made us weep, and he inspired us. And his magic helped his candidate, who won in a largely Republican district.

I had brought with me a copy of March, the autobiographical graphic novel trilogy about the Civil Rights movement that he had written for young people with Andrew Aydin, which was illustrated by Nate Powell. I had bought it for my grandson and was hoping I could get Lewis to autograph it. I came close.

As he made his way out the side door, mobbed by well-wishers, I was one person away from shaking his hand and handing him the book. And then he was gone. 

Here is a video of John Lewis receiving The National Book Award for March–one of several awards it garnered.

Annie

Note: A documentary, “John Lewis; Good Trouble,” has just been released. 

Continue reading “In the Presence of John Lewis…”

Wherein My Personal Blogosphere Expands Via a Fun Exchange With a Super New Acquaintance

I’ve often said that I’m one happy blogger: I love to write and to research new topics; I’m grateful for your feedback; and—this was one aspect of blogging that I hadn’t anticipated but is becoming one of the most valuable—I feel personally enriched by meeting so many extraordinary, talented people from all over the world.

The most recent is Judy Dykstra-Brown, a poet, writer, artist, and lecturer who blogs at Life Lessons. She’s a prolific blogger, posting something—sometimes several things—every day. That energy alone boggles my once-or-at-most-twice-weekly blogger mind!

My virtual meeting with Judy occurred in a manner that frequently happens among bloggers. As about 30% of my subscribers aren’t bloggers, I hope you WP folks will bear with me while I explain this process—very briefly.

Judy clicked on “like” concerning a comment I’d made on someone else’s blog. That triggered a WP email informing me of her action and citing some of her posts that I might find of interest. Intrigued, I visited her site. 

It’s a treasure trove, as you can imagine from the versatility I note above. I immediately knew I wanted to see more, so I clicked on “follow” and became one of her more than 5000 subscribers.

I was drawn to a funny little poem she’d written, which—as is often the case—fueled my own creativity. I responded in verse, and Judy then began to follow me. She also graciously reblogged one of my posts, a poem I’d titled “Chaos in America…BUT…We Can End It!” 

(An aside: The poem was written as a near-acrostic, in which the first letter of each line, viewed vertically, clearly spelled out the title. However, that little attempt at cleverness required indenting parts of the longer lines—formatting that apparently became lost when I had system problems and my WP advisors told me I needed a new menu. I didn’t realize the impact of the change until I saw the post again, lines now awry, with Judy’s reblog. The fix involves html, which is not my native language…so it may not happen soon. If you choose to read the poem, please note the bolded first letters.) 

Anyway, we had such fun with our first meeting that I thought I’d share with you Judy’s poem, my verse response, and our subsequent exchange.

Judy’s poem:

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Image courtesy of flickr.com

Piscine Phobia

I don’t eat salmon, don’t eat flounder.
I prefer my protein rounder—
chicken, roasts or food like that.
Fish is too fishy and too flat.

Tuna mixed with soup and noodle
I despise kit and caboodle!
Nothing could persuade me that
I should eat food fit for a cat.

I won’t eat food grown in a swamp,
so crabs and clams I never chomp.
No protein caught by motor boat
will ever pass my teeth and throat.

When dinner parties serve up chowder
I’m likely to just take a powder.
I simply can’t take the suspense
of what fish lurks in soup so dense.

So if you want to plan a treat
that I will find the nerve to eat,
once again, I must repeat,
forget the lobster. Give me meat!

And my comment:

“Give me meat,” the woman pleads,
But I must turn aside:
A bloody steak, a fatty slab
Will make my gorge uprise.

“No mammals” is my credo;
I find it tough enough
To eat a little Nemo
From seas serene or rough.

I used to love my bacon,
But now a baby pig
Reminds me I’m more comfortable
Just chewing on a fig.

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Image courtesy of needpix.com.

Judy’s response:

Touche!!! Ha. It takes all kinds of us in this world, right?

And mine:

It does indeed. And if we could all accept and embrace our differences with good humor, what a lovely world it could be!

————————

When I asked Judy if she was OK with my printing the above on my blog, she said, “Of course, you are most welcome to…It was a fun interchange. I predict future ones as well.”

I’ve written about inspirational people. After reading Judy’s bio. on her blog and information about the books she’s written, I’ve concluded that she’s clearly one of them. 

So with regard to future fun interchanges, the pleasure will certainly be mine!

Annie

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:

image.png

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.

******************

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

Continue reading “Help With A Critical Endeavor: Providing Meaningful Comfort to the Sick and Dying”

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