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.

Thursday, August 07, 2014

August 7, 2014 — Lessons from Valerie

Valerie Harper was a fixture on TV sitcoms when I was growing up. From her role as Mary Richards' BFF on The Mary Tyler Moore Show, to her own spinoff, Rhoda, to a host of other TV and stage roles, her brand of wacky, self-deprecating humor has had a long run.

Now, her days are filled with thoughts of something decidedly not funny: lung cancer, metastasized to the meninges, the membrane surrounding the brain. She’s receiving experimental treatments, hoping for the best and trying to get the most out of every day.

She never smoked. Although many people hear the words “lung cancer” and say to themselves, “Oh, another smoker,” that’s certainly not true of every lung-cancer patient. In Valerie’s case, it’s probably in her genes. Her mother, also a non-smoker, succumbed to the same disease.

A recent article in the AARP Magazine describes Valerie’s active way of engaging the disease. Here are a few things that have worked for her:

1) Visualization: “She has also been practicing imagery, envisioning a tiny Tinker Bell-like version of herself moving through her meninges, tapping her cancer cells with a magical finger. ‘They then become glowing little good cells,’ she explains with a giggle, ‘or, if they’re not willing to give up their cancer-ness, they just turn into white lights. I talk to them, saying, “Listen, you guys, this is dumb. We could live together. But you can’t keep growing and crowding out the other cells. You’re killing the host!”’”

Visualization didn’t do much for me when I was receiving cancer treatment, but I know it’s a technique many survivors swear by. What I find especially healthy about Valerie’s approach is that she doesn’t treat the cancer cells like invaders, like some bacteria. She’s fully aware that her cancer cells are part of her own body. They’ve just gone rogue. If she’s able, by focused thinking, to influence the behavior of those cells, so much the better.

Note that she doesn’t employ the familiar military metaphor here. She’s not “battling” cancer. She’s accepting it as part of her own body, a malfunction in her genes. She’s trying to reason with it. Whether or not her visualization exercises are having any real effect, who’s to say? We do know the mind-body barrier is somewhat porous, though — so, why not?

2) Humor: As one might expect of a comedian, Valerie lightens the situation with humor: “‘I’m past my expiration date,’ Harper jokes as she addresses a small crowd.... “But really, I am holding my own, as you can see. My motormouth has not stopped! Seriously,’ she continues, ‘what I have is not curable. That’s not the way with this disease, apparently. But who knows? This diagnosis makes you live one day at a time, and that’s what everyone should do: Live moment to moment to moment.’”

Note the realism in Valerie’s remarks. I’m sure she hasn’t stopped hoping for a miracle, but she’s not planning on one. There a real centeredness about that approach: living, as fully and intentionally as possible, in the now. Humor helps ground us, moving our thoughts away from future dread and back into the present.

As Valerie’s former Mary Tyler Moore Show co-star, Betty White, says of her: “She’s kept her sense of humor and balance. My beloved husband Allen Ludden [who died from stomach cancer in 1981] had that same attitude, and I swear it added a year we wouldn’t have had.”

3) Gratitude: “‘Look, I was 73 when I got this news,’ says Harper. ‘Not 43. Not 28 with little children. I don’t want to leave my daughter or this doll of a husband. But I have to be realistic. I’ve had a lot of great stuff — spectacular stuff — happen to me. I’ve got to not be a pig about life.’ She tosses her head back and laughs.”

That calls to mind the line from Proverbs 31:25, the description of the “capable wife,” who’s so much more than merely an appendage to her husband, a wise and strong woman:
“Strength and dignity are her clothing,
and she laughs at the time to come.”

Some people, dealing with a discouraging cancer prognosis, would focus only on that, but Valerie explains how she’s focusing on the goodness she’s enjoyed. She’s determined “not to be a pig about life.”

According to the article, Valerie has accomplished all this without relying on resources of faith (at least, not faith in the conventional sense). She’s not a religious believer, but has pursued self-help programs from the human-potential movement.

Visualization, humor, gratitude: these are resources anyone can tap into. Of course, from my perspective, I’d say faith takes us far beyond any strength we can summon up from within ourselves, or by relying on loved ones. There’s no reason, though, to belittle resources such as these, which are formidable.

We can be grateful to Valerie for being such a good teacher, and sharing her inner life so freely.

Wednesday, June 25, 2014

June 25, 2014 — Comfort In, Kvetch Out

A friend shared an article with me the other day that contains a piece of advice that’s so practical - so downright sensible - it seems incredible no one has thought it up sooner.

It comes from a newspaper article that’s about a year old. In a Los Angeles Times article, "How not to say the wrong thing," April 7, 2013, co-authors Susan Silk and Barry Goldman address the age-old question, “What do you say to somebody who’s sick?

To understand the advice, you have to conjure up a simple diagram composed of concentric circles with a dot in the middle. The dot is the sick person. The first circle around the sick person is the sick person’s closest relative — a spouse, a parent, a child. The next is other immediate family. Then comes extended family. After that, friends. Then, close co-workers. Then, people in the next office who nod hello to them at the water cooler. Keep drawing circles until you work down to the level of casual acquaintances.

The categories associated with one person may be a bit different than for another. Some people are closer to their best friends than to their family. It’s not so much the labels on the circles that are so brilliant, as what you do with them.

After you’ve plotted your own location on one of the circles, take a look at those who are closer to the patient than you. Then, turn around and observe those who are not so closely connected as you are.

The Comfort In, Kvetch Out rule is this: When you turn towards those who are closer to the patient than you, what you say should be words of comfort. When you turn towards those who are in a less intimate relationship than you, then you can feel free to kvetch — to complain about how bad your friend’s or relative’s illness makes you feel, or how it inconveniences you.

We all need to kvetch from time to time. The art is in deciding who we kvetch to. If our kvetching is directed outwards, that’s fine. If it’s inwards, it can be a burden to those who are already carrying more burdens than we are.

The most important person in the system — the patient — is allowed to kvetch 100% of the time,  no questions asked. As for the communications they receive from others, the goal is 100% comfort.

From the article:

“When you are talking to a person in a ring smaller than yours, someone closer to the center of the crisis, the goal is to help. Listening is often more helpful than talking. But if you're going to open your mouth, ask yourself if what you are about to say is likely to provide comfort and support. If it isn’t, don’t say it. Don’t, for example, give advice. People who are suffering from trauma don’t need advice. They need comfort and support. So say, ‘I’m sorry’ or ‘This must really be hard for you’ or ‘Can I bring you a pot roast?’ Don't say, ‘You should hear what happened to me’ or ‘Here’s what I would do if I were you.’ And don’t say, ‘This is really bringing me down.’

If you want to scream or cry or complain, if you want to tell someone how shocked you are or how icky you feel, or whine about how it reminds you of all the terrible things that have happened to you lately, that’s fine. It's a perfectly normal response. Just do it to someone in a bigger ring. You comfort people in the smaller rings. You kvetch to people in the larger rings.”

One important take-away from the article is that advice-giving is a variety of kvetching. You may think you’re helping the person in the smaller ring, but you’re not. Most of the time, advice-giving is more about meeting the needs of the advice-giver than it is about genuinely helping the advice-receiver.

Very likely, what the person in the smaller ring yearns to receive from you, far more than advice, is listening. Listening is one of the most important forms of comfort.

Comfort in. Kvetch out. Not a bad little rule, don’t you think?

Tuesday, June 03, 2014

June 3, 2014: Seasons of Survivorship

I feel like my life as a long-term lymphoma survivor is like those series of photos you sometimes see, depicting a changing landscape through many seasons.

The concerns of a survivor immediately after diagnosis are quite different from those of a person who’s been through various treatments — be they “watchful waiting” or something more aggressive — and years of wondering when, or if, treatment will ever be required again.

A recent online interview with an experienced cancer nurse — Richard Boyajian, RN, NP, Clinical Director from the Dana-Farber Brigham Cancer Center — describes this changing landscape.

Although many people tend to lump all experiences together under the label, “cancer,” indolent lymphomas are a very different animal. Everyone wants a treatment plan. Nobody wants a “waiting plan”:

“One of the most difficult things about follicular lymphoma is that it is often more of a chronic disease. You have to treat it like a different animal. If it's not aggressive we tell patients, ‘We'll follow you until it gets bad enough that we want to treat it.’ This approach is often called 'watch and wait,' which can be very emotionally and psychologically difficult for patients to understand and deal with because they don't have an action plan they have a waiting plan. One of the most important parts of survivorship for follicular lymphoma is making sure patients are able to cope with that type of an approach.”

A certain psychological strength is needed. A few of us, I suppose, demonstrate such strength from the beginning. A great many more of us gain it along the way, like a gym patron going through repeated rounds of exercise.

What it’s all about is learning how to live with the unknown:

“For me, one of the most important parts of follicular lymphoma survivorship is acknowledging that it can be very stressful psychologically upfront so the patient knows what to expect and knows that their feeling are normal.

Frequently, after their treatment, patients want to know, ‘When is it going to come back? Is it going to come back?’ Those are really difficult questions to answer because everyone is so individual. Trying to get people comfortable with the unknown is one of the challenges we face as health care professionals.”

Boyajian encourages us to look on indolent-lymphoma treatment not so much as striking a single, decisive blow as resetting a clock. Treatment typically doesn’t wipe it out, but merely pushes it back, after which it can be expected to return eventually:

“Patients should understand that there is a natural timeline for follicular lymphoma; but our goal is to reset the clock. If a patient has a poor timeline because they have an aggressive disease, that's an indication that more aggressive treatment is needed and will change the natural history of that timeline. Someone with an indolent disease and a longer timeline might have a watch-and-wait approach where we make sure the disease doesn't change and become more aggressive.

That's why it is important to discuss the emotional impact of 'watch and wait.' Someone that doesn't need treatment may have a poorer quality of life because they are constantly thinking about their disease and cannot really go on because they're so overwhelmed with it. We want patients to live a long time, but they also need to make sure their quality of life is good. These two things go hand in hand. If people aren't enjoying the life they have, whether it's long or short, that's very upsetting for me.”

Depression is a normal feature of the disease. For me, personally, this has been one of the most difficult learnings. To most people, depression seems an aberration, a disease in its own right that ought to be curable. Often it takes the form of a self-destructive feedback loop: you realize you’re feeling depressed, which makes you feel even more depressed.

Yet, we can also see depression as an indolent disease in and of itself. Or, maybe it’s simply the cancer viewed from another perspective — the mental manifestation of the disease.

Boyajian is realistic about this:

“It is normal to feel anxiety and depression after getting a follicular lymphoma diagnosis but anxiety and depression can cause people to make decisions that may not be in their best interest. We need to ensure that every patient diagnosed with any type of cancer knows it is okay to talk about their concerns and fears. Getting the right treatment for anxiety or depression should be considered a priority.”

There can be a tendency, after treatment begins, to put off other tests and treatments, as cancer becomes the all-consuming priority. I can recall, for example, wondering whether I should postpone going to the dentist, because if I were going to die anyway, what did it matter if I never got that cavity filled?

That’s a mistake, as Boyajian points out:

“Besides following blood counts and the size of your lymph nodes for infection, it is important to remain connected with your primary care doctor and get all of the necessary screenings. Patients should get the normal health screenings as part of the standard medical survivorship follow-up. If a patient has diabetes, heart disease or high blood pressure it is just as important to manage that as well as their cancer. Poorly controlled diabetes will cause more problems than slow growing follicular lymphoma and may also affect future treatment options. The healthier you are, the more options you have so a healthy diet, exercise and maintaining a good weight are very important.”

We survivors learn to take care of ourselves, through every season.

Monday, June 02, 2014

June 2, 2014 — Long-Term Survivorship

This excerpt from the online memoir of a follicular lymphoma survivor, Evelyn Lipori, mirrors my survivorship experience — of the journey from panic and fear to a deep assurance of hope. Evelyn is Director of Individual Giving for the Lymphoma Research Foundation.

There’s quite a difference, as Evelyn points out, between the days right after diagnosis...

“I was only 37 years old and the reality of a cancer diagnosis quickly set in. I became consumed with thoughts of dying, of leaving my husband with our two young children, of not being here for graduations and weddings. I was worried I would never see grandchildren.”

...and the relaxed and assured viewpoint of a veteran...

“Over the years, my perception of survivorship has undoubtedly evolved. In the early days, I was simply grateful to have ‘survived’ my diagnosis and subsequent treatments and still be alive. But today it means many things I never quite imagined.

For me survivorship means hope - finding hope through education and knowledge about my disease and giving hope to others by sharing my experience with newly diagnosed patients.

Survivorship means giving back. I've been involved with LRF in various capacities ever since my diagnosis - as an advocate, a volunteer, a board member, a donor, chapter president and most recently in my current role on the LRF staff as Director of Individual Giving.

Most importantly, survivorship means living life to the fullest despite the 'dark cloud' of a lymphoma diagnosis that can seem to follow you wherever you go. So much progress has been made and continues to be made in lymphoma research that there are now treatments becoming available that were barely an idea in someone's laboratory back in 1997. I live each day with the comfort of knowing there are many alternatives should I ever need treatment again.

In the meantime, I've seen my kids grow up, graduate from high school, college and graduate school. John and I just celebrated our 32nd wedding anniversary and each passing year brings me closer to seeing my children's weddings and the grandchildren I never dreamed I would be here to see.

Cancer survivor? You bet I am!"

Wednesday, April 30, 2014

April 30, 2014 — Bye, Bye Port

Personal lymphoma stories I can tell on this blog have been few and far between lately — which is a good thing — but today I passed a milestone of sorts: I had minor surgery to have my chemo port removed.

This was supposed to happen at the end of last summer, but I’d put it off for various reasons. Then, when I landed in the hospital last October with my pulmonary embolisms (and subsequent internal bleeding and kidney failure), there was no question of doing it then. Now that I’ve put that mess behind me and am off disability and back at work, it seemed the right time to do this.

The surgeon was Dr. Aron Gornish, the same doctor who’d put the port in seven years ago. He’d expressed some concern that the port had shifted recently and was in the wrong position (which, he thinks, probably happened when I was getting the temporary dialysis port put in). Fears of a complicated port-removal fortunately proved to be unfounded.  The port came out easily.

I'd been feeling a great deal of anxiety ahead of this procedure, and I’m not sure why. My worries focused around pain. I’m a veteran of four local-anesthetic surgical procedures — two bone-marrow biopsies and the installation and removal of the dialysis port — and felt pain with none of them. So, you’d think I would be cool, calm and collected about this one.

Not so. If anything, I was more nervous about this surgery, not less. I spoke to Claire about it this morning, through my bleary-eyed, insomniac haze. She thinks it’s because I know more (rather than less) now about what those procedures are like — how, when you’re conscious on the operating table, you just lie there, feeling like you’re right on the cusp of feeling or not feeling pain. You realize how close you are to a perfectly horrendous experience, and how it’s all in the surgeon’s hands whether or not you’ll soon be moaning and clenching your teeth.

Is knowledge truly power? Not in this instance, it seems.

I’d asked Dr. Gornish, several weeks ago, about whether I could expect to feel any pain. “That would depend on your pain threshold,” was his only reply. (Note to surgeons everywhere: this is not a wise thing to say to a patient asking that question, even though it may technically be true. You should talk instead about all the steps you methodically take, in the operating room, to avoid causing pain.)

I didn’t get much sleep last night, because I kept recalling the experience of the dialysis port insertion back when I was in the CCU, and how weird it felt to be lying there with a surgical drape over my face, feeling the tugging and pulling of the surgeon as he completed his mission. I couldn’t help thinking of what it would be like this time if I could feel the cut of the scalpel after all, and if I would jump when the hard little port with its tail of flexible tubing was pulled out through the incision. I imagined how helpless I would feel in that situation, but how the surgeon would have no choice but to forge on, since the procedure couldn’t be halted midstream.

Those fears were groundless. Except for the pinch of the first Lidocaine injections, I felt no pain. I could feel plenty of pressure, along with the predicable tugging and pulling. A number of times I could hear the hiss of the aerosol can of topically-applied Lidocaine, which Dr. Gornish picked up and used frequently. The operating-room nurse couldn’t be more solicitous, engaging me in small talk about our kids and my job, at what I assume were the most critical moments.

I was wearing a blood-pressure cuff and pulse oximeter throughout the procedure. The nurse remarked how, as soon as I’d heard Dr. Gornish say the port was out, my pulse and blood pressure dropped to a normal level. For sure, the body doesn't lie.

I’m home now, with a waterproof bandage covering the incision, under which (they tell me) are steri-strips and dissolving stitches. I’m supposed to keep icing it today, to avoid additional bleeding. I’m also told I have to be careful, when showering, not to get too much water on it, and am not supposed to do any upper-body exercising. Apart from those things, though, there are no special precautions.

I’ve been dreading the port-removal experience for the past six years or so, ever since I heard a fellow cancer support-group member tell of the agony she felt when her doctor just “yanked it out.” Was that a bit of hyperbole on her part, or was her surgeon not so thoughtful about the anesthetic? It doesn’t really matter. I’m just glad to have this experience behind me.