Friday, May 22, 2015

May 22, 2015 — Dying and Unafraid

Anyone who’s read widely about religion in America knows the name of Phyllis Tickle. As the longtime religion editor for Publisher’s Weekly, she’s had a great influence on contemporary religious writing. In recent years, she’s garnered acclaim for several books of her own, most notably The Great Emergence. These have sought to make some sense of the rapidly-changing American religious landscape.

She hasn’t written much about her own faith journey, though — or, at least, nothing I’ve seen in print. She’s been diagnosed, now, with Stage 4 lung cancer and has been told that her condition is not curable.

Maybe that diagnosis has freed her to share more deeply about her inner life. In a Religion News Service interview published today (“Author Phyllis Tickle faces death just as she enjoyed life: ‘The dying is my next career’”), she shares the details of a near-death experience she had as a young woman of 21. She’d been given an experimental drug to prevent a miscarriage, and things went south after that:

In the middle of the night, she stopped breathing; her husband, a medical student at the time, was able to revive her long enough to get her to the hospital.

“Mine was a classic near-death. So, not much to say,” she begins. “I was dead.


“I was like a gargoyle up in the corner of the hospital room,” she continues. “And I remember to this day looking down and watching Sam beat on me again and screaming for the nurses, and the nurses coming with the machines and the whole nine yards. And then the ceiling opened and I just went out the corner and into a tunnel, which was grass all the way around. Ceiling, sides, the whole thing.

“And I went to the end of the tunnel to this incredible — people call it ‘the light.’ I guess that’s as good a name as any. But an incredible peace, a reality, unity, whatever. The voice, which was fortunately speaking in English” — she laughs again — “said, ‘Do you want to come?’ And I heard myself saying, ‘No, I want to go back and have his baby,’ meaning Sam.”

She recalls that she turned around and went back down through the hole in the ceiling and into her body.


Her analysis, all these years later?

“You’re never afraid of death after that,” she told the interviewer. “I’m sorry. You could work at it but you’d just never be afraid of it. … You don’t invite that kind of thing. It’s a gift. It’s not like you can prepare for it or anything. It’s part of the working material you’re given.”

Such experiences are truly a gift — both for those who have them and for those who hear about them.

Tuesday, May 12, 2015

May 12, 2015 — The Mountain Lion in the Fridge

“What’s it like to go through cancer treatment? It’s something like this: one day, you’re minding your own business, you open the fridge to get some breakfast, and OH MY GOD THERE’S A MOUNTAIN LION IN YOUR FRIDGE...”

That’s the beginning of a rather creative blog post by a cancer survivor named Caitlin Feeley. It brought a smile to my face because it’s so accurate.

Not the mountain lion in the fridge part, of course: but the things various people say to you as you’re trying to claw your way up the mountain where the only creature capable of fighting off the mountain lion — a bear — happens to live. Things like, “That’s not really a mountain lion, it’s a puma,” and “I read that mountain lions are allergic to kale, have you tried rubbing kale on it?”

I don’t feel right about cutting and pasting the whole thing here, but here’s a link where you can read the whole piece.

Well done, Caitlin. You captured the experience.

Sunday, April 19, 2015

April 19, 2015 — Blood Test for Cancer?

This is huge.

Today’s New York Times tells of some research now under way that could lead to a simple blood test that could be used to diagnose cancer, particularly blood cancers like lymphoma (Gina Kolata, “Blood Test Shows Promise as Alternative to Cancer Biopsy,” New York Times, April 19, 2015)

From the article:

“The hope is that a simple blood draw — far less onerous for patients than a traditional biopsy or a CT scan — will enable oncologists to quickly figure out whether a treatment is working and, if it is, to continue monitoring the treatment in case the cancer develops resistance....

‘This could change forever the way we follow up not only response to treatments but also the emergence of resistance, and down the line could even be used for really early diagnosis,’ said Dr. José Baselga, physician in chief and chief medical officer at Memorial Sloan Kettering Cancer Center....

A National Cancer Institute study published this month in The Lancet Oncology, involving 126 patients with the most common form of lymphoma, found the test predicted recurrences more than three months before they were noticeable on CT scans.”

The new test follows a novel approach: searching for tiny snippets of cancer DNA that the body sheds into the bloodstream. The DNA shards are tiny and short-lived (they last for only a few hours), but extremely sophisticated blood tests are evidently now able to pick out this particular needle-in-a-haystack.

Early signs are that the test may be more useful for follow-up with existing patients who are known to have had tumors than for first-time diagnoses. It doesn’t appear to be the sort of test that could successfully be given as a routine screening for healthy patients:

“Another possible application — early diagnosis of cancer — is trickier. If a blood test showed cancer DNA, what would that mean? Where is the tumor, and would it help to find and treat it early? Some cancers stop growing and even go away on their own. With others, the outcome is just as good if the cancer is found later.”

If this blood test is successfully developed for clinical use, it could greatly reduce the need for CT and PET scans in monitoring patients during and after treatment.

As I’ve said, this is huge (although, admittedly, still just a theory at this point). I’ll be watching for further news on this.

Monday, April 13, 2015

April 13, 2015 — Bankruptcy Fears

Here’s a factoid I ran across today, in an article in Cure magazine. Over one-third of cancer patients, in a recent study, identified bankruptcy as one of the worst fears they’re facing as a result of their treatment.

Think about that: one-third! (Actually, it was a little worse than that: 37.1 percent). That’s an awful lot of worried, seriously-ill people, who are obsessing over something not directly connected to their disease.

Now, here’s the real kicker. From the article:

“Most of the [480] patients were covered by an employer-based plan or some form of Medicare; 18 participants had purchased their coverage through a health insurance marketplace; and five patients reported not having insurance of any kind and being unable to afford a plan.”

Most of the people who such worries about going bankrupt have insurance! So much for insurance providing peace of mind. What does that say about the quality of the insurance safety net so many are depending on?

Even worse than worrying about inadequate insurance is the worry about having no insurance at all. A great many survey respondents spoke of certain trade-offs they’ve had to make, to keep their medical funding in place, “such as choosing doctors based on co-pays, cutting back on food, activities — including education — to save money, and becoming isolated from family members. 'Even if I starve to death, I will not let go of my insurance. That is my life,' said one woman.”

It’s a sad commentary when a seriously-ill person is reduced to describing her insurance policy as her life.  For far too many in our country, medical insurance is indeed a life-or-death matter.

Time for national single-payer health insurance — such as nearly every other industrialized nation already has — wouldn’t you say?

Thursday, April 09, 2015

April 9, 2015 — Obscenity and Glory

Easter’s come and gone. The day, anyway. For Christians who follow the liturgical year, the season lives on, in the forty days between Easter Day and Pentecost.

Today I ran across this quotation from a collection of sermons by Frederick Buechner, The Magnificent Defeat (HarperCollins, 1985). Buechner is a preacher’s preacher. Although he doesn’t step into a pulpit that often, his influence as a writer is widespread, and much-appreciated by those who craft sermons week in and week out.

Here’s the excerpt:

“Anxiety and fear are what we know best in this fantastic century of ours. Wars and rumors of wars. From civilization itself to what seemed the most unalterable values of the past, everything is threatened or already in ruins. We have heard so much tragic news that when the news is good we cannot hear it. But the proclamation of Easter Day is that all is well. And as a Christian, I say this not with the easy optimism of one who has never known a time when all was not well but as one who has faced the Cross in all its obscenity as well as in all its glory, who has known one way or another what it is like to live separated from God. In the end, his will, not ours, is done. Love is the victor. Death is not the end. The end is life. His life and our lives through him, in him. Existence has greater depths of beauty, mystery, and benediction than the wildest visionary has ever dared to dream. Christ our Lord has risen.”


What I like about this expression of Easter faith is its realism. There no illusions, here, that life is never hard. There’s no attempt to sell the idea that God offers the baptized a “Get out of suffering free” card. There are plenty of purveyors of spiritual snake oil out there who carry around whole stacks of such cards, and hand them out as a come-on. (It works. They always seem to be surrounded by hopeful hordes waving dollar bills.)

Buechner’s got too much integrity for that. For him, the cross is not an item of sparkly gold jewelry, but an “obscenity” that — paradoxically — leads to glory.

For people with cancer, or anyone else who’s on a hard road, there’s hope in that vision. Hope doesn’t come from finding a way around life’s struggles and heartaches. It comes from resolutely forging on through them — knowing that, on the other side, someone’s waiting for us. Someone who’s been through it, too.

Monday, March 23, 2015

March 23, 2015 — God is Bigger

J. Todd Billings is a Reformed Church in America minister who’s on the faculty of Western Theological Seminary in Holland, Michigan. Like me, he’s dealing with an “incurable but treatable” blood cancer diagnosis: in his case, multiple myeloma. He’s written about his cancer experience in a new book, Rejoicing in Lament: Wrestling with Incurable Cancer and Life in Christ (Baker,  2015).

I intend to get the book and read it, but in the few teaser excerpts provided by the publisher, I’ve heard echoes of my own experiences of years past.

I was particularly impressed by an anecdote he tells in the opening pages, of receiving a card from a 15-year-old girl from his congregation with Down Syndrome. By way of encouragement, she wrote: “Get well soon! Jesus loves you! God is bigger than cancer!”

Billings identifies some pretty good theology in the girl’s words:

“While I had received many cards in the previous days, this one was different. ‘God is bigger than cancer!’ Yes. She did not say, ‘God will cure you of this cancer,’ or ‘God will suffer with you.’ God is bigger than cancer. The fog is thick, but God is bigger. My cancer story was already developing its own sense of drama. The sky was closing in, enveloping my whole world so that nothing else could creep in. But God’s story, the drama of God’s action in the world, was bigger. The girl in my church wasn’t denying the fog or the loss but testifying to a God who was greater, the God made known in Jesus Christ, who shows us that “the light shines in the darkness, and the darkness did not overcome it (John 1:5)….”

Billings also finds comfort in the famous first Question and Answer of the Heidelberg Catechism:

“‘What is your only comfort in life and in death? That I am not my own, but that I belong — in body and soul, in life and in death — to my faithful Savior Jesus Christ.’ Like the note from the fifteen-year-old girl in my church, it breaks through the fog of ‘terminal’ and ‘incurable’ and ‘cancer’ by pointing us to the bedrock of what matters: that I belong, in life and in death, to Jesus Christ. My life is not my own….”

I like this concept of the bigness of God, when it comes to living with cancer. The first tendency of many of us, as we learn of a cancer diagnosis, is to allow the cancer to grow in our minds until it crowds out everything else, even our faith. This amounts to making the cancer into an idol, an object of false worship. The god to whom that idol bears witness is a malevolent deity, indeed. But that doesn’t stop us — in horrified fascination — from ascribing to the cancer god all sorts of power over us.

A healthy understanding of the bigness of the one, true God is the way to overcome that false worship. As the teenager with the mighty heart bears witness, cancer’s big, but God is bigger.

Billings goes on to say:

“This place of not knowing is one that sometimes feels like a thick fog for me right now. I could have five years, ten years, or decades. Who knows? Not me. We belong to God — the Alpha and the Omega, who holds time In his hands — but we are not God. We are mortal, and we don’t know when we will die. There is a fog for all of us, whether we realize it or not, that as creatures we do not live in the world as individuals who own it but as temporary stewards of God’s good gifts.”

How easy it is to reduce God to the sum-total of our needs and desires! “Where are you, O God?” is so often our demand, when we learn that our expectations of a long and healthy life are threatened by a cancer diagnosis.

Yet, if God is indeed bigger than our dreams and desires — bigger, even, than our very lives — then isn’t it just a trifle audacious for us to shake our fists at the heavens, demanding an answer to that question?

It’s only human to voice such angry laments, from time to time. I don’t think God is particularly offended by that sort of thing. Because God is bigger. Yes, indeed.

(Quotations from J. Todd Billings,  Rejoicing in Lament: Wrestling with Incurable Cancer and Life in Christ [Baker, 2015], selections from pp. 1-7.)

Saturday, February 28, 2015

February 28, 2015 — Dear Cancer, I Hate You

“Dear cancer, I hate you.” Those words that begin the personal essay are jarring. They’re written by a young woman named Jenna Rose Lowthert, in an essay published in our local newspaper, in memory of her mother, Gina.

Gina died of cancer.

Yes, cancer is something we come to hate. But — as in the odd occurrence of the word “dear” in this letter’s opening — there’s also a macabre intimacy to it.

We live with cancer — both those of us who are actively being treated, and those of us in remission. We hate it, yes. But it’s also become part of our lives.

It’s part of us. A symptom of our fallen condition on this earth, perhaps. A dark mystery. The intimate companion we never invited into our lives.

Here’s some of what Jenna wrote (click on the link above to read the whole article):

Dear cancer,

I hate you.

You’re terrible.

You are the true definition of a heart breaker.

You single-handedly ruined my entire life in the matter of 10 short months.

You took away my best friend, the only person in this world who will ever love me unconditionally.

You took away my mother — and you took her in the most horrible way possible. You stopped her heart from beating at the young age of 48....


Yet, as Jenna has evidently discovered, cancer is also a teacher, although a harsh one:

The same thing that drives me to live after this loss is the same reason I hate you.

But cancer, you did not win the day my mother gained her angel wings.

You did not beat her. She beat you, as she left this world with her love, her hope, her strength, her bravery and her dignity, surrounded by the people who she loved the most.

You may have destroyed a lot, but you have, in turn, taught me lessons I never thought I would learn by age 25. You showed me just how short and precious life truly is. You showed me that every day is a gift and that I should never take anything or anybody for granted. You have forced me to recognize a strength within myself that I never knew existed.

Cancer, although I hate you with all of my heart, you have brought out the woman in me that my mother always hoped I would be....

And that is why you did not win.


Cancer is our teacher, but it is also our adversary. In contending with this challenge, we grow stronger. And better.

Who’s to say if this is the best way for us to grow? Who’s to say if God could have accomplished the same purpose in some way that’s easier, less painful?

From our limited vantage-point, we can never say for sure. But we can strive to live with cancer. We can strive to do it with courage, as Jenna and her mother have.

Thursday, January 08, 2015

January 8, 2015 - What You Can't See in the Tide Pool

A poignant personal reflection on life and death, today, from Anne Lamott's book, Traveling Mercies:

We were, in fact, going to learn later that afternoon that my father had a brain tumor on the word section of his brain, a metastasized melanoma, something no one had ever survived at that time. In just a week or so, doctors were going to take out as much of the tumor as they could, but they weren't going to be able to get it all; its tentacles reached deep inside his brain. He was going to come home from the hospital to his girlfriend's house looking like Dr. Frankenstein had had a go at him. He was going to have the most aggressive forms of radiation and chemotherapy available, be part of a clinical trial that wouldn't work for him; he was going to have one good year in between these treatments where he would be able to work off and on, and walk with us every day; he was going to live to see John graduate from Berkeley; he was going to live to see my younger brother graduate from high school; he was going to live to see me sell a novel about our family to a fancy New York publisher; he was going to live to read a draft of it while his brain was still functioning.



But then the cancer was going to start to eat away at his mind, and he was slowly going to end up like a huge friendly toddler. He was going to have to bear knowing for a while that his mind was going; he was going to have to bear letting his kids and girlfriend dress him, clean him, feed him; he was going to end up living at the one-room cabin with me and Steve, his girlfriend and oldest friends around, playing Pete Seeger on the stereo, and Billie Holliday, Joan Baez, and Mozart, the Modern Jazz Quartet. He was going to end up in a coma a month before he died, the cabin turned into a hospice room and us the stricken nurses. My father's handsome fair face was going to have tumors on it— tumors on the skin that today was flushed with health. The cancer was going to spread like a chain of stores, and he was going to need morphine and catheters and lemon swabs and fleecy bedding. Maybe he would hear the music we played on the stereo in the cabin, maybe he would be aware of us watching him through the night, but what we did not know that day on the lava rock was that he was going to die two years from this August morning—this morning when the three of us were walking about peering into tide pools, with our dog Muldoon bumping into our legs, the late-summer diffusion of light making everything in the pools seem larger: the sea anemones, the bloom of algae, the tiny crabs.

Saturday, December 27, 2014

December 27, 2014 — It’s Always Something

I ran across an older article today that I had somehow missed when it came out (oh, I know why I missed it — I had just gotten out of the hospital at the time, recovering from my pulmonary embolisms and complications thereof). On January 4, 2014, George Johnson writes, in a New York Times article called “Why Everyone Seems to Have Cancer”:

“The rhetoric about the war on cancer implies that with enough money and determination, science might reduce cancer mortality as dramatically as it has with other leading killers — one more notch in medicine’s belt. But what, then, would we die from? Heart disease and cancer are primarily diseases of aging. Fewer people succumbing to one means more people living long enough to die from the other.”

I’ve written about this phenomenon on other occasions. In most cases, tt’s not that cancer is increasing, due to pathogens in the environment or from whatever other cause you may care to name: we’re just living longer because other threats to human survival have been minimized. And the older we get, the more our cells become subject to mutations that can result in cancer.

Something similar is happening with Alzheimer’s Disease, that’s likewise on the rise. It’s a disease of the aged, so if you increase the number of the aged, you’re going to see more disease.

Johnson continues:

“[Cancer] is not so much a disease as a phenomenon, the result of a basic evolutionary compromise. As a body lives and grows, its cells are constantly dividing, copying their DNA — this vast genetic library — and bequeathing it to the daughter cells. They in turn pass it to their own progeny: copies of copies of copies. Along the way, errors inevitably occur. Some are caused by carcinogens but most are random misprints.”

Remarkable progress has been made, Johnson points out, in reducing or curing childhood cancers — mortality from childhood cancers has fallen by more than 50% since 1975. When specific cancers are caused by carcinogens — such as tobacco smoke in the case of lung cancer, or poor public sanitation in the case of some stomach cancers — gains have been made on those fronts, as well. But still, an increasingly aged population means increases in cancers as well.

I’ve occasionally heard some people say, tongue-in-cheek, after the latest news report that some food or chemical causes cancer: “Life causes cancer.” There’s actually some truth to that.

Monday, November 17, 2014

November 17, 2014 — Bye, Bye Bexxar

There are many ways our market-driven healthcare-funding system in the United States is just plain crazy, but one of the most damaging is the way it tends to suppress certain vital and effective medications. This has evidently just happened to Bexxar, which is no longer available. Along with its competitor Zevalin, Bexxar is a radioimmunotherapy agent.

Radioimmunotherapy is an ingenious bonding of a monoclonal antibody drug — Rituxan (rituximab) — with tiny radioactive particles. It delivers a one-two punch: the Rituxan chemically seeks out the cancer cells and the radioactive particle destroys them.

Radioimmunotherapy has proven to be very effective, and has the added advantage of doing its job in just one dose, with minimal side effects.

What’s not to like?

The people who really don’t like it are oncologists. And why? Because not many of them have the proper qualifications to administer it. As a hybrid of nuclear medicine and oncology, radioimmunotherapy requires doctors either to be dual-certified in both disciplines or to be part of a large clinic or group where both specialties are represented (a rare thing, in this case).

Many oncologists profit on two levels: both their professional fees and the fees they charge for running a chemotherapy suite. If their chemo suite doesn’t offer nuclear medicine as well, they lose a big chunk of change by referring a patient out.

An oncologist who refers a patient for radioimmunotherapy loses tens of thousands of dollars in billable fees. That’s a powerful financial incentive to stick with traditional chemo — even though that treatment takes longer (many months of infusions as compared to a single injection) and often has arduous side-effects.

This is not a problem for a large, multi-specialty clinic, but the typical oncology practice — which includes a group of oncologists only — can’t handle it. As Dr. Bruce Cheson of Georgetown University puts it, “patients had to be referred from one doctor to somebody somewhere else, which meant not only losing control of the patient, but also losing income from the patient.”

In many cases, radioimmunotherapy agents cost less — not as a single dose, but when averaged out over the total time required for treatment.

“There is actually no other drug out there with a track record like this,” writes Dr. Mark Kaminski of the University of Michigan, who helped devlop Bexxar. “Approximately 30% of patients can achieve long-term remission with Bexxar lasting over a decade. That's the biggest disappointment with this drug, now that it's gone, for patients with this disease — it was an easy treatment, it took only one week to finish, and if there were any side effects, they were all reversible. I've been giving Zevalin lately because I don't have Bexxar to work with, but I don't have as much confidence that it will be a solution for patients as much as Bexxar would have been.”

If we had a single-payer healthcare system (like Medicare), and if doctors practiced in multi-specialty clinics like the Mayo Clinic or the Cleveland Clinic — where they receive a salary rather than billing patients by the hour — then doctors wouldn’t stand to lose by recommending radioimmunotherapy. More patients would benefit.

Why do we expect physicians to be both medical practitioners and entrepreneurs? Sometimes those two functions are in conflict with one another, and this is a prime example.

Too often in our healthcare system, profits come first and patients second.

Monday, November 10, 2014

November 10, 2014 — The Downside of Early Diagnosis

I read in the New York Times the other day about an “epidemic” of thyroid cancer in South Korea: a fifteen-fold increase in what had been, until recently, a relatively rare cancer. Thyroid cancer is now the leading cancer in that country.  (H. Gilbert Welch, "An Epidemic of Thyroid Cancer?" New York Times, November 5, 2014.)

How to account for the increase? A team of researchers set out to discover the reason.

After gathering their data and running the numbers they came up with the culprit: increased diagnosis.

Yes, diagnosis. Beginning in 1999, the government health program started paying for cancer screenings. Many doctor’s offices are equipped with relatively inexpensive ultrasound machines, so they naturally ordered up the test. Drastically increase the number of screenings and you’ve got — you guessed it — a greater number of diagnoses.

It’s not that there was an increase in thyroid cancer. There was an increase in the ability to diagnose the cancers that were already there.

That may seem like a good thing, but it’s actually a bit more complicated than that. As the article goes on to explain:

“Where did all those new thyroid cancers come from? They were always there. As early as 1947 pathologists recognized that, although it was a very rare cause of death, thyroid cancer was a frequent finding during autopsies. Studies have since shown that over a third of adults have thyroid cancer. Virtually all of these cancers are small ‘papillary thyroid cancers,’ many of which will never become evident during a person’s life.

Unless that person receives a screening ultrasound. In fact, virtually all the newly identified thyroid cancers in Korea are papillary thyroid cancers. How do we know this is not a real epidemic of disease? Because the number of Koreans dying from thyroid cancer has not changed. If the screening were saving lives, the death rate would decline, or increase more slowly as the epidemic spread — but not stay perfectly flat.”


I was diagnosed with papillary thyroid cancer a few years ago and had my thyroid gland removed. I had no physical complaint at the time. I wouldn’t have known I had it, were it not for the regular CT scans I was having at the time (monitoring me for a recurrence of lymphoma).

I take a thyroid-hormone replacement pill (Synthroid) every day, and calcium supplements (Extra-Strength Tums) twice a day, because my blood tests following the surgery indicated calcium deficiency (a common side effect of thyroid surgery, due to damage to the nearby parathyroid glands). That’s no great inconvenience, but if I went a couple of weeks without my Synthroid, I’d be pushing up the daisies.

Was my surgery necessary? Would watch-and-wait have been more appropriate? There’s no way to tell for sure. Complicating the decision, of course, was the fact that I was already a cancer survivor at the time the thyroid tumors were found.

Still, I wonder...

Tuesday, October 14, 2014

October 14, 2014 — Hospice and the Elephant in the Living Room

OK, this is something of a grim subject. But it need not be.

The subject is conversations about dying and end-of-life care. I’m writing, now, more as a pastor than as a cancer survivor reflecting on my own situation. (Thankfully, my health has been good, and there’s been no sign of recurring lymphoma.) My wife, Claire, is a minister who’s worked for more than 15 years in hospice ministry, so this is a subject that does come up at the dinner table from time to time.

I’ve seen a number of moving news articles on this subject recently.

Atul Gawande has written in the New York Times, summarizing the goal of palliative care in hospice programs as providing patients with “the best possible day.” Hospice has got that wonderful here-and-now focus. Not tomorrow. Not next week. But today. Carpe diem.

Nina Bernstein has written in that same newspaper about a situation in which offering a patient the best possible day seemed to be the last thing on medical caregivers’ minds. She tells the story of Maureen Stefanides, who worked without letup to find a way to get her dying father, Joseph Andrey, out of a nursing home and back to her home so he could die with dignity. Tragically, a web of competing health and financial regulations — coupled with a shortage of home-care nurses and aides (a singularly low-salary occupation) in high-rolling New York City — made that impossible. As it was, the poor man was simply falling apart with multiple age-related issues, and no one seemed willing to stop the aggressive-treatment train. Stopping it in his case was all the more difficult because the nursing home stood to lose profits if they discharged him to home hospice care. (“The nursing home collect[ed] $682.48 a day from Medicare, about five times the cost of a day of home care.”) There’s really got to be a better way to run a healthcare system.

In Ms. Bernstein’s case, talking about hospice care was not the issue, but for many families it’s the proverbial elephant in the living room. Family members tiptoe around the subject, thinking it’s important to keep a relentlessly positive attitude, fearing that if their loved one knew he or she were “terminal,” the terminus would arrive all the sooner. In reality, the sick person is likely very aware of the imminent end, and may have strong feelings about what sort of end-of-life care is the best. Yet, on their side, seriously-ill patients sometimes hesitate to raise the subject with their families, out of deference to their feelings. Such “after you, Alphonse” hesitation often leads to an unwanted final few days in a medically-invasive intensive-care unit.

An article about President Obama’s recent signing of the Impact Act, which will lead to greater Federal scrutiny of hospice programs, observes that “The median length of stay for hospice patients in recent years has been fewer than 20 days — probably much too short, in many cases — so a hospice that provides six months’ care for half its patients is a true outlier.” Claire has shared, from her experience in hospice chaplaincy and bereavement support, that a shockingly large number of patients in her program live less than 48 hours after their admission to the program. This has nothing to do with the quality of care; it's just that so many patients aren't even recommended for hospice until they're just days (sometimes hours) from the end. I’m told hospice team members have a name for that sort of patient: “on and gones” - as in "on the program and gone." In some cases, the program barely has an opportunity to provide any of their excellent services, because the patient doesn’t live long enough to receive them.

The heightened Federal regulation is important, because there’s been a proliferation of for-profit hospice programs, taking advantage of Medicare payment policies that can make palliative care financially lucrative for the providers, especially if they can pick and choose which cases they accept. Some of these for-profit programs are heavy on the marketing and light on the services provided. Claire works for a non-profit program associated with our local hospital system. They have a lower profile but provide better, more comprehensive services than some of the for-profits.

A few years ago, Sarah Palin got the whole nation into a fit of agita over her made-up “death panels” campaign issue. I think this is one of the most reprehensible things any politician has ever done, because the government’s failure to work the end-of-life conversation into Medicare payment regulations has led to a great many patients missing out on hospice care they would have very much wanted. Political opportunism at its worst.  For shame.

Too many patients today are paying a heavy cost for her death-panels diversion.

We’ve simply got to find a better way, as a society, to talk about this particular elephant in the living room.

Wednesday, September 03, 2014

September 3, 2014 — Go On In, You’re Surrounded

I ran across an article today that made me think. Here’s Mike Di Ionno, a columnist for the Newark Star-Ledger, reflecting on the experience of his brother, Paul, who died of a rare cancer:

“I don’t know what’s worse, the cancer or the loneliness,” he said. “Because at night, when Lolly (his wife) kisses me on the forehead and puts me to bed and turns out the light, it’s just me and this disease. When I leave the doctor’s office, it’s just me and the cancer. When people visit, they leave and then it’s just me and the disease.”

There is something isolating about the experience of cancer — or, I suppose, any serious illness. If you catch a cold, there are plenty of people who can commiserate with you about the runny nose, the sore throat and all the familiar symptoms. Everyone knows what it’s like to have a cold. Talking about those symptoms with someone else is an exercise in community.

Not so with cancer. The majority of the people you meet have never had it — or, if they’ve had some other form of cancer, their symptoms can easily be very different from your own. Sitting in the chemo chair, you look around and realize that only the people reclining in the other chairs have the slightest idea of how it feels. Not even the nurses, who pump that goop into people’s veins every day, know how it feels.

But there’s some consolation, as Mike Di Ionno points out. There are people — a very small number of people — who hang in there with you. They can’t sympathize, because they haven’t been through it. But they do their best to empathize:

“I have learned that the obituary words ‘surrounded by family’ are the most beautiful phrase in this newspaper. It is the only thing that eases the loneliness of the disease. It comforts, when medicine fails.”

Some good advice for all of us, when a friend or family member has cancer:

“When someone is in the final stages, we all feel helpless and uncomfortable, and worry about being intrusive on private pain and grief.

We ask, ‘What can we do?’

My answer today is, ‘Show up.’

Show up and hold their hand. Show up and say the things you’ll regret not saying, even if they are whispered in the ear of a comatose person. Leave nothing unsaid. Leave nothing unsaid.

Show up in person, call on the phone. Prove to them they were loved and that they mattered.”

Here endeth the lesson. Amen.

Saturday, August 09, 2014

August 9, 2014 - A Promising Discovery

"I have seen the future of cancer treatment, and its name is... Silvestrol?”

I’m not qualified to make such a claim, of course, but maybe some knowledgeable researchers who are would go so far as to say such a thing. There’s a bit of hyperbole in that statement, but it’s an eye-catching way to point out a new discovery that could be a really significant development in the long term, for blood-cancer patients.

According to an article the Leukemia and Lymphoma Society has been sending around, Silvestrol is a compound derived from “a plant called Aglaia foveolata, which is native to Indonesia, Brunei, and Malaysia.”

Rather than attacking a certain well-known cancer-causing gene, this stuff prevents it from being produced at all.

The tree is an endangered species, whose habitat is threatened by development.

An older article, chronicling the substance’s discovery, is here.

This reminds me of a movie that came out a while back, Medicine Man (1992), starring Sean Connery and Lorraine Bracco. Two courageous botanists fight off developers, whose bulldozers are about to ravage a section of Amazonian rain forest where a promising cancer drug has just been discovered. They bicker then fall in love, of course. (Hey, it's Hollywood, what do you expect?)

There’s more on the website of Memorial Sloan-Kettering (which is where Silvestrol’s treatment potential is being investigated)). “Blocking the production of key cancer genes is a completely new way of treating cancer,” says Dr. Hans-Guido Wendel, a Memorial Sloan-Kettering cancer biologist. “That is exciting, and it also means we have a lot to learn about it.”

I will likely be years before any patients can be treated with this new drug, but its discovery is certainly something to celebrate.