'Most cancer doctors avoid saying it's the end'

A new study finds that only one-third of terminally ill patients had discussed end-of-life care. Those who did, the study found, were no more likely to become depressed than those who did not, and were less likely to spend their final days in hospitals on life-support equipment.

An AP article on the study explains:

The new study is the first to look at what happens to patients if they are or are not asked what kind of care they'd like to receive if they were dying, said lead researcher Dr. Alexi Wright of the Dana-Farber Cancer Institute in Boston.

It involved 603 people in Massachusetts, New Hampshire, Connecticut and Texas. All had failed chemotherapy for advanced cancer and had life expectancies of less than a year. They were interviewed at the start of the study and are being followed until their deaths. Records were used to document their care.

Of the 323 who have died so far, those who had end-of-life talks were three times less likely to spend their final week in intensive care, four times less likely to be on breathing machines, and six times less likely to be resuscitated.

About 7 percent of all patients in the study developed depression. Feeling nervous or worried was no more common among those who had end-of-life talks than those who did not.

WebMD offers more coverage of the study here.

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So why are two-thirds of patients not having these conversations? My guess is first that many patients don't want them; everybody faces death differently, and cancer patients in particular carry a lot of excess linguistic and cultural baggage about "fighting" their disease. (Do people "fight" kidney disease or congestive heart failure?) In person, I often joke about the "I'm gonna beat this thing!" complex that stops some people from acknowledging the seriousness of their disease until the very end. I've written a little about how metaphors can support and undermine coping here (read the comments).

And, of course, we all know that many doctors will squirrel out on this kind of stuff out of misguided notions of what's good for their patients and a natural human desire to not say difficult, potentially upsetting things. (Physicians are also notoriously bad at estimating prognosis (see this tasty post for a link), often with a bias toward overestimating a patient's survival; perhaps they convince themselves they'll have time to break the bad news later?)

My thoughts: I wasn't surprised that terminally ill people benefited from frank conversations with doctors about end-of-life care. I was surprised so few people had those conversations.

My preliminary position is that doctors should understand that their patients are hugely resilient and capable of absorbing difficult truths. Obviously, timing is tricky and a doctor should never force his view of the situation on a patient, but tactfully acknowledging the elephant in the examining room is more likely to relieve stress than generate more.

In memoriam, Brandyn Beck, age 10

Brandyn Beck, a Indiana 10 year old, died at home in March of epithelioid sarcoma. If I read his site correctly, he was diagnosed with metastatic ES (a primary tumor on or near the thyroid, mets to the lungs), around June of 2007 and was treated with surgery, proton radiation and chemo. He was good-natured boy, fond of cycling, skating and almost anything having to do with wheels, most especially (I infer from his MySpace page) if those wheels were Harley-Davidson.

Brandyn's blog, which includes a newspaper article about his illness as well as his obituary, is available via MySpace. 

**

This begs a question: Why do I do this to myself? To you? 

Although obituaries, particularly of the very young, are tough reading, one of the many unfocused goals of this site is that it should serve as a repository of memories -- my own, of course, but also those of others I run I across who have endured this terrible illness. 

For me, then, printing an obituary is a gesture of solidarity and respect to the dead and their loved ones. A good obit can also serve as inspiration through illness (as in this account of Nicole Morgan's emphatic bravery and loving family). They also show the terrible scope and diversity of this disease, not that we need reminding of that. 

THE SICK GUY MAKES A SERIOUS REQUEST: All that said, I'd much rather write about you or your loved one while you are alive. 

If anyone is game to tell me their story to be presented here for an audience of hundreds, please let me know. I'd love to profile you and squeeze a little more mileage out of my journalism degree. I'm also interested in any and all ES links you come across, so please pass them along via comments or the e-mail "Contact Me" at right.

Lunch

When David Letterman asked the late musician Warren Zevon what his cancer had taught him about life and death, he replied, "How much you're supposed to enjoy every sandwich."

Secular prayers

Reading Alain de Botton's somewhat silly piece on the desirability of creating a secular religion for atheists reminded me of a conversation E. and I had after I was diagnosed.

He told me, as many others had told me and as I myself had told many others, that he would be "thinking" about me constantly as I confronted this disease.

I was moved, of course, but it also occurred to me how feeble the verb "think" feels in a crisis, and we talked about that for a while. Yet for those of us who aren't sure about god, but are fairly certain that she is not an intercessionary deity (for if she were, why would she heal my tumor, yet afflict the poorest people on earth, or send a cyclone to Burma, or Mugabe to Zimbabwe?), these special "thoughts," these projections of empathy and sympathy and hope, are what we have: a secular form of prayer.

I am grateful for them, as I am for the religious prayers from people for whom praying comes more naturally.

**

I can't resist quoting a cancer survivor's diary here. Confronted with the horrific possibility of losing his stomach, he begins praying. At first, things don't go well:

Time, surely, to get my prayer on.

That turned out to be a lot like going to the kitchen and deciding to make palladium. I was pretty sure that I couldn't just start asking for stuff. I was pretty sure I didn't even believe in god. I looked up prayer in the dictionary. I looked up prayer in the Catholic Encyclopedia. Interesting, but I didn't feel down with submitting myself to the will of a being I probably didn't believe in.

Finally, I decided that I would just try to say things that were true. The main problem with even this strategy is that it's just about impossible not to be disingenuous when you think you might be talking to god. It's all about making a good impression, and it takes a while--I think it took me a good 30 or 45 minutes of trying to slyly bullshit god--to turn off the part of your brain that's always calculating, the part that makes you act humble to get more dessert, or less cancer, or whatever.

He finally came to a place where he could speak honestly, and it brought some comfort. I'm not quite there yet.

So to my friends who are currently grieving enormous loss, or struggling with deadly illness or temporary disappointment, I am thinking about you, imagining comfort and peace and sending out my secular prayers.

After all, as de Botton says, "God may be dead, but the bit of us that made God continues to stir."

'What I've Learned'

I'm a fan of Esquire's often-imitated "What I've Learned" department. One of the interviews that stuck in my mind was a conversation with magazine employee Glenn Fitzpatrick, who was diagnosed with Lou Gehrig's disease in 2007.

It’s hard to describe ALS. If you read the clinical description of amyotrophic lateral sclerosis, you’d think it’s the most horrible disease you can have. But living through it is different than that. Maybe it’s because I have always tried to look on the bright side of things. Maybe it’s because I can still get around somewhat. Maybe it’s the Zoloft. But I figure if you are going to die young, ALS at least affords you the opportunity to do some of the things you always wanted to do. And it gives your friends and the people who love you the opportunity to let you know how they feel while you can still interact with them.

The disease itself is almost surreal. Everything weakens so gradually that you almost get used to it. If I had woken up one day feeling like I feel now, I’d be freaking out. But it’s played out over time. Now I think, Well, I almost didn’t make it up that step. I guess I won’t be able to walk soon. It almost seems like the natural order of things.

This puts a lump in my throat. People can be so brave.

When thumbs up is no comfort

The New York Times just published an article about how attitudes and images of cancer can interfere with coping with the disease.

This is a recurring concern for me. Although I'm a big believer in positive attitude, in fighting, in living in the present moment, etc., all of these models are imperfect. Worse, some of them can feel punitive if things don't go well -- after all, attitudes don't kill, tumors do. (The Times article page helpfully linked to a metastudy that analyzed studies relating to the influence of psychology on cancer survival and recovery. Bottom line from the abstract: "here is little consistent evidence that psychological coping styles play an important part in survival from or recurrence of cancer. People with cancer should not feel pressured into adopting particular coping styles to improve survival or reduce the risk of recurrence.")

I'll share more of my thoughts on this soon -- as well as some from the late Alice Trillin, who has brilliant thoughts about the limitations of the different "talismans" we use to try to make cancer less scary.

Here's just a little taste from the Times piece:

Dr. Gary M. Reisfield, a palliative care specialist at the University of Florida, Jacksonville, believes that the language used by cancer patients and their supporters can galvanize or constrain them. Over the last 40 years, war has become the most common metaphor, with patients girding themselves against the enemy, doctors as generals, medicines as weapons. When the news broke about Senator Kennedy, he was ubiquitously described as a fighter. While the metaphor may be apt for some, said Dr. Reisfield, who has written about cancer metaphors, it may be a poor choice for others.

“Metaphors don’t just describe reality, they create reality,” he said. “You think you have to fight this war, and people expect you to fight.” But many patients must balance arduous, often ineffective therapy with quality-of-life issues. The war metaphor, he said, places them in retreat, or as losing a battle, when, in fact, they may have made peace with their decisions.

To describe a patient’s process through illness, he prefers the more richly ambiguous metaphor of a journey: its byways, crossroads, U-turns; its changing destinations; its absence of win, lose or fail.

I tend to think of cancer as a "fight," not a journey (facile joke: who'd want to travel to sarcomaland?), but I'm more and more aware of the problems with "fighting." To name just one, I think being too invested in the fight is what makes finishing initial treatment so psychologically difficult for many people, myself included.

I dropped into a pretty black pit of depression when I couldn't actively "fight" for a while. Suddenly my purpose was gone; I couldn't find larger meaning in my ongoing extreme discomfort from the grueling treatment. I am trying to learn from that and I'm working deliberately to think of the illness in different terms, including as a means of growing personally and seeing the world more clearly and meaningfully.

Of course, I'm still childish and I still want to kick the cancer's ass.

***

By the way, myxoid chondrosarcoma (or was it a leiomyosarcoma?) survivor Brian Wickman is quoted extensively in the piece. He's a cool guy. A YouTube video of him speaking to a group that hooks cancer survivors up with each other for rafting and kayaking adventures is here.

Expiration dates

Leroy Sievers of NPR's My Cancer blog is usually worth reading (and listening to, when he's feeling up to going on air). He has a horrific colon cancer that has metastasized in all sorts of vicious ways requiring all sorts of hellish interventions -- and yet, there he is working professionally and savoring life when possible personally.

I found some "difficult hope" in this recent entry he wrote after Ted Kennedy's sad diagnosis:

When a limit has been put on your life, when all of a sudden life seems more urgent, you want to know.

"How long?"

When I asked that the first time, the answer was about three months. Here I am, almost 30 months later. What's the lesson here?

I guess it's, what's most important is the living, not the preparing to die.

This can't be said enough, I guess. Sievers' prognosis (30 months and counting from three) also reminds me that prognosis is not destiny -- it's often not even tied to reality.

A four-time cancer patient's notes

Carter aide Hamilton Jordan beat cancer three times over 24 years, finally succumbing recently to mesothelioma. In a memoir, he published his "top 10 tips for cancer patients," which the New York Times Well blog helpfully summarized, along with some more information about Jordan. I found these tips particularly resonant with my ES experience (follow the link for all of them):

No. 2: Seek and know the truth about your illness, and prognosis.

If you don’t have the facts, and don’t know the truth, you won’t make good decisions. It takes courage to ask questions about statistics and your prognosis.

No. 3: Get a second opinion.

We wouldn’t buy the first computer or cellphone we looked at. Shop around when your life is at stake….I got second opinions on all of my cancers.

No. 4: Determine upfront how broad or narrow your physicians’ experience is.

If you have something that your doctor says, “I’ve never seen this before,” get another doctor. You want your doctor to be very familiar with your disease.

No. 5: If you have a poor prognosis, or a rare form of cancer, try to get to a center of excellence.

If your doctor doesn’t believe he or she can cure you, you won’t believe you’ll be cured.

No. 6: Do not allow your caregivers to project their values, goals and expectations onto you.

In my book I tell the story of a 68-year-old man who was diagnosed with PCa (prostate cancer). And this man is in very good health other than the PCa. His 35-year-old doctor reasoned that since his life expectancy was only five or six years, that he recommended that the man do nothing for his PCa and told him it would take the PCa four or five years to kill him. This man wanted to live to be 80 or 85. He didn’t accept that. He had his prostate removed, and many years later he’s in good health, and probably will live to be 80 or 85. Don’t let your doctor project his or her expectations in life out on you.

In praise of difficult hope

Hope may have feathers, it may float like Ivory soap, but its key characteristic for me is this: You have to put some weight behind it. That rock isn't going to push itself up the hill by itself. Hope is an idea put into action, a melding of thought and deed that results in something powerful -- the idea gains conviction from the action, and the action gathers reach and scope from the idea.

This is part of why Barack Obama's voice is so powerful. He taps into our sense that we need hope -- and action. I don't expect Obama to magically transform Washington (much less the United States, or our beautiful, miserable world) through the beauty of his face, story and words. But I do expect him to get some crucial work done because when he talks about hope in one breath, he usually talks about action in the next. He'll conjure up images of mutual respect, increased civility, finding common ground -- and then he puts some weight on it, by talking about how he'll build a working legislative majority.

I digress. What I really want to do here, because I haven't sorted out what I think about hope, is defer to Dr. Jerry Groopman, whose book The Anatomy of Hope: How People Pervail in the Face of Illness, has a lot to offer to people working to stay hopeful in the face of calamitous illness:

Hope is one of our central emotions, but we are often at a loss when asked to define it. Many of us confuse hope with optimism, a prevailing attitude that "things turn out for the best." But hope differs from optimism. Hope does not arise from being told to "think positively," or from hearing an overly rosy forecast. Hope, unlike optimism, is rooted in unalloyed reality. Although there is no uniform definition of hope, I found one that seemed to capture what my patients had taught me. Hope is the elevating feeling we experience when we see -- in the mind's eye -- a path to a better future. Hope acknowledges the significant obstacles and deep pitfalls along that path. True hope has no room for delusion.

Here's some of Groopman's sense of how action feeds hope:

Hope can arrive only when you recognize that there are real options and that you have genuine choices. Hope can flourish only when you believe that what you do can make a difference, that your actions can bring a future different from the present. To have hope, then, is to acquire a belief in your ability to have some control over your circumstances.

A little more on the use of hope:

Each disease is uncertain in its outcome, and within that uncertainty, we find real hope, because a tumor has not always [SG note: Uh, Mr. Harvard, ever?] read the textbook, and a treatment can have an unexpectedly dramatic impact. This is the great paradox of true hope: Because nothing is absolutely determined, there is not only reason to fear but also reason to hope.  And so we must find ways to bridle fear and give greater rein to hope.

Will this hope charge up the immune system? Mute pain signals? Power some of us through to survival? I'm not so sure, and Groopman's chapter on the biology of hope isn't terribly convincing. But I know that it makes life richer -- and maybe, just maybe, lays the foundation for the kind of miracle that some of us need (and a few of us get).

Live Strong, Live Weak, Just Live

I visited the doctor last week, and the check-in area was laden with free stuff from the Lance Armstrong Foundation: bracelets, brochures, postcards. I do love free stuff.

As I wondered just how many yellow bracelets I could in good conscience take, my eyes drifted to the foundation’s “manifesto.” (The word “manifesto” makes me want to reach for a rock, but that’s another issue.) I read:

We believe in life.
 Your life. 
We believe in living every minute of it with every ounce of your being.
 And that you must not let cancer take control of it. 
We believe in energy: channeled and fierce. 
We believe in focus: getting smart and living strong.
Unity is strength. Knowledge is power. Attitude is everything. 
This is the Lance Armstrong Foundation.

We kick in the moment you’re diagnosed. 
We help you accept the tears. Acknowledge the rage.
 We believe in your right to live without pain. 
We believe in information. Not pity.
 And in straight, open talk about cancer. 
With husbands, wives and partners. With kids, friends and neighbors. And the people you live with, work with, cry and laugh with.
 This is no time to pull punches.
 You’re in the fight of your life. ....

There is much to admire here -- and even more to admire in the foundation’s work.

But I found myself repulsed and saddened by the manifesto’s rhetoric. Some of it was the jabby marketing talk. The short sentences. The powerful verbs.

But what really got me is the pernicious limitations of “strength” as a model for living with and through cancer. Surviving this disease is not just a fight, and strength is not the only necessary commodity. As George Demetri, the Harvard sarcoma genius, pointed out somewhere: Lance Armstrong is a remarkable man, but he had perhaps the most chemosensitive type of tumor in existence. This is not to minimize what he went through, and what he accomplished afterward, it’s just to highlight his limitations as a model for the rest of us. And to be fair, Armstrong himself is quite well aware of this.

I want to live strong -- and, in fact, I wear the bracelet to remind myself that I am strong and that others are in solidarity with me, sharing their strength -- but I know that strength isn’t everything. Which is why Bill Stuntz’s thoughts on “living weakly” with stage-4 colon cancer touched me deeply when I read them yesterday. (Another thing that touched me that day of thinking of bracelets, and manifestos, and cyclists: My friend BY sent me a picture after completing his first 100-mile bike ride. He was wearing a bracelet for me. More bacon for you, my friend.)

When you’re not manifesto-ing or writing marketing copy, strength is a slippery concept. Sometimes it means embracing weakness. Here’s Stuntz (and do read the whole thing):

Reduced life expectancy aside, the chief consequence of stage 4 cancers—even more, the chief consequence of their treatment—is weakness, not strength. Cancer and chemotherapy, taken together, are exhausting. Walking up a flight of stairs feels to me like running a couple of miles would feel to a typical out-of-shape 50-year-old, which is what I would be if I were healthy. All mental exercises are several times harder than they used to be...

In short, I can’t live strong, because there isn’t much strength left in me. But I can live weak.

What does that mean?

.... An interesting thing happens when you put aside all the yardsticks and just do what’s possible. Motivation changes. Work is no longer about achievement and reward. It’s more about love and beauty. There is something very powerful—C.S. Lewis might have called it deep magic—about working for love of the work itself: labor becomes less labored, more gift than obligation. I don’t know how much longer I’ll be able to put words on a computer screen—but the ability to do it now, even if only sometimes, is more precious than I can describe. I don’t know whether that makes the work better, but I’m pretty sure it makes me better.

Likewise, there is something inexpressibly lovely—notice that word’s first syllable—about ordinary tasks done for love of the tasks, and done while in the grip of a disease that seems determined to make those tasks impossible. It’s the beauty of a runner’s last marathon, the beauty of an aging athlete’s final game, the game he pours his soul into, as the best artists do in their best work. It may not be lovely to anyone else, and that’s OK by me: cancer is an ugly disease, in every possible way. No wonder people recoil from it. But in the midst of all its life-sapping, soul-destroying ugliness, something amazing can happen: the most ordinary things, the most mundane tasks, take on value and beauty beyond anything I could have imagined. Whether or not anyone else sees it, I see it. And that’s enough.

“Live strong” sounds to me like denial: I’m not strong, and pretending I am can’t change that fact. But I can live weak: do what I can, however small and ordinary, day by day. Some of the living—I wish it were more, but at the same time, I thank God for the “some”—is surprisingly good.

Yes.

Department of More Yes: Here's L., hoisted up from the comments to guest addendum blog:

I love this entry and Bill Stuntz's thoughts. I have long had ambivalent feelings about the "live strong" bracelet, which I wear in hope for you but mostly because of the intense and beautiful solidarity with which they were given to us by T., friend and colleague who passed them out at work for us to wear with knowledge that everyone there was behind us. And truly, what gives them meaning is to sit in a meeting and look around the room and catch a glimpse under a sleeve or right there on a bare wrist -- so many yellow bracelets. They are crazy sunshine (OK, winner's yellow jersey) yellow that doesn't match a thing anyone would wear, and yet there they are, a silent message of hope and caring. But everytime I think of the literal message that I'm wearing I feel my failure. It's a great idea, a Tour de France-winner kind of ideal that I wish I had some kind of kinship with, but maybe "live weak" is as fairly applied to the sufferers and the caregivers as long as we make the effort to see beauty and joy at least sometimes. I've asked myself, if you die, what will I do with this bracelet? Never take it off in remembrance, of both you and a life ethic I'd like to embrace? Have a symbolic and satisfying moment with scissors? Or tuck it in a drawer to come across along with all of the other things that will break my heart? I can't answer that yet. But to the people who wear these ugly rubber bracelets, no longer cool, every day because they love you -- us -- it does not escape my notice. The friends who stay through the long, bloody, tedious battle, this to me is grace and god.

Clearly L. deserves her own blog, but I'm happy to have her with me, here and everywhere.

ES DVD available

Joshua Isaac, the epithelioid sarcoma patient who made a documentary about his illness, just started selling DVDs of the film at the My Left Hand website. Some of the proceeds will go to support sarcoma research. I embedded a trailer to Isaac's film in an earlier post.

Isaac, who is undergoing experimental chemotherapy for metastatic disease, is also blogging his experiences. His blog is memorable and moving.

The things we carry

Almost two years ago, during the hot, dazed August of my diagnosis, I was sitting at my desk. Word had gone around about the cancer; I was having painful but sustaining conversations with my friends and co-workers, explaining what I had learned, what I thought it meant, and appreciating all the offers of help. (Of course, then, as now, I wasn't sure what would actually help.) Then another knock at the door. J. this time. 

He came in and we talked about the illness and his sorrow about it and he reached out casually to touch my shoulder -- and that effort to reach across the divide, to physically comfort someone he didn't really know all that well -- touched me so much that my mask almost crumpled into tears. We talked about practical things, possible personal connections to oncologists and such, and J. also told me a story from Annie Dillard about monks being instructed to carry their mortality like a hot coal.

I imagined cowls, a walk down long road. I imagined the heat and pain of this constant companion; but also how, possibly, it might sharpen one's perception of the world. But who would choose to live this way? And why? J. and I didn't talk about that -- we were at work, after all -- and I didn't go back to Annie Dillard until almost two years later.

*

I think the dying pray at the last not ‘please’ but ‘thank you’, as a guest thanks his host at the door. Falling from airplanes the people are crying thank you, thank you all down the air; and the cold carriages draw up for them on the rocks. Divinity is not playful. The universe was not made in jest but in solemn incomprehensible earnest. By a power that is unfathomably secret, and holy, and fleet. There is nothing to be done about it, but ignore it, or see. And then you walk fearlessly, eating what you must, growing whatever you can, like the monk on the road who knows precisely how vulnerable he is, who takes no comfort among death-forgetting men, and who carries his vision of vastness and might around in his tunic like a live coal which neither burns nor warms him, but with which he will not part. 

*

Reality check. 

A "live" coal, not a hot one. No burning, no warmth. 

And what's up with the airplane? The 'thank you' at the last I get generally -- but not in a falling airplane, not in this universe. Dillard, you're nuts! (OK, OK, I believe airplanes figure into Pilgrim at Tinker Creek in various ways, so maybe the thank-you criers aren't as crazy as they sound to me.)  

*

My memory seemed to contradict the actual passage. No burning, no warmth? Talking to another wise friend helped me begin to start making sense of it. One can imagine a certain literal smoldering coal that could be carried somewhere in one's traveling effects but would require vigilance and attention. It wouldn't burn you -- if you respected it and remembered that it was there. Precious vulnerability and mystery. At other stages of my life, I do not believe I would, like the monk, elect to carry the knowledge of my vulnerability so closely; but since I have been handed a coal, I am trying to learn to attend to it and walk my road without fear.

They make movies

This post features two trailers for documentaries about surviving epithelioid sarcoma (well, one is about a vascular cousin to epithelioid sarcoma called epithelioid hemangioendothelioma). I'm blown away by someone managing to document their disease right in the midst of the worst for it; during my darkest days, I was happy to get out of bed or reach for a glass of water. An auteur I wasn't.

The first trailer is by Joshua Isaac, a Seattle-area father of three who has been battling this disease for 10 years. I don't know him, but I can tell he is a man of faith, courage and great devotion to his family. The film won an audience award at the 2007 Tacoma Film Festival. 

I warn you: Even the trailer to My Left Hand is not easy to watch. The film documents the reality of this disease, which is often amputation and highly toxic chemotherapy. The preview is below or at My Left Hand:

The second trailer is for a film by Kris Carr titled Crazy, Sexy, Cancer. (I'm in need of attitude adjustment. If my cancer were a documentary, it would be titled something like Tedious, Sucky, Cancer.) I'll have more to say on this film at some point because it is actually available through Netflix (it aired on network cable as well). I'm still amazed that two wildly different thirtysomethings with rare and brutal sarcomas were able to make films about their experiences. 

At any rate, the apparently irrepressible Carr's site is at Crazy Sexy Cancer and her trailer is below:

When the doctor doesn't call

Sarcoma offers pain, angst and a heavy dose of waiting by the phone. 

Let me explain: If you're diagnosed with epithelioid sarcoma, or any sarcoma really, you should see a sarcoma specialist. This often involves traveling to a big medical center.... Dana Farber, Mayo, Cleveland, Johns Hopkins, Sloan-Kettering, MD Anderson. (See here for a list of sarcoma centers.) The problem is that these places are busy, and their doctors are often arrogant jerks oversubscribed. So after you wait for your appointment, you may wait a long time for notes and recommendations -- even if your specialist promises them right away. And when you call/write/e-mail reminders after the promised timeframe elapses, you may hear nothing.

A recent discussion on the Sarcoma Alliance bulletin board aired a member's experience waiting months for information from her specialist at MD Anderson Cancer Center. I, too, recently spent weeks waiting for a promised surgical consult from a doctor at Sloan-Kettering. The logjam finally broke when I insisted that my doctor (whose e-mails had gone unreturned) page the surgeon. He called me within the hour. Anyway, some tips from the collective wisdom:

Be assertive at the visit. Ask how and when the doctor will follow up with you or your doctor.

Ask your doctor to call/e-mail the physician on your behalf if the promised follow-up doesn't happen.

If that doesn't yield results quickly, call the doctor's office yourself and leave a message. I'm not sure whether it's best to leave a message with the doctor's administrative assistant or her nurse.

If that doesn't work, urge your doctor to page the other doctor.

If that doesn't work, or your local oncologist is part of the problem, talk with the patient advocate or patient-advocate equivalent at the specialist's medical center. This can be a very powerful tool.

General thoughts: You have to be persistent and assertive. I (now) believe that you need to escalate the matter quickly once a mutually agreed-upon deadline passes. You also, of course, need to be understanding of the doctor's situation. But the experiences described on the board, as well as my own, convince me that it's easy to fall through the cracks and screw up your treatment by being passively "nice."

Bonus thought:It's often possible to negotiate medical timeframes. If you're told that you'll get word on a scan/biopsy/whatever in a week, it's reasonable to ask nicely if you could have the results sooner.

'Only with more pancakes'

I was going to write something last night, and then the Hindenberg of bedtimes struck. That's the wrong analogy: It captures the epic sense of disaster, but not its soul-crushingly tedious unfolding. It was more like the trapped-in-a-submarine-running-out-of-air-in-enemy-waters kind of bedtime, but that doesn't exactly unspool itself from the keyboard. Small children are can be so delicious -- those chubby thighs, that creamy skin -- but man, they sour in a hurry when bedtime goes on too long and becomes a festival of elbows, hot breath and excessive water consumption.

As it happened, last night I was planning a few words on pleasure and scarcity.

Everyone has probably wondered at some point, what would I do if I had six months to live? Ride an Indian motorcycle across Europe? Move to Florence or Barcelona? Drive across the south in search of barbecue and pie? Surfing lessons?

Realistically, most of us are bound by finances, insurance and medical treatment to our regular, pre-expiration-date lives. (Key point: No one has described my potential lifespan in terms of months, and the estimates doctors give to patients of cancer prognosis are usually inaccurate, anyway.) But my disease was always serious, and is now incurable, so I have thought a lot about how I want to live my life. My answer: bravely, honestly and with my family.

But the late journalist Marjorie Williams put it so much better than I can. One of the pleasures I take in reading is finding something that unearths and perfectly expresses something I think or feel, but haven't articulated. In her essay "Struck by Lightning," which is the best cancer memoir I have read and sadly isn't online in complete form, Williams describes her illness, and asks the essential questions about how to live closely shadowed by death. You don't launch some existential quest, she says. Instead, normal life... and pancakes:

What would I do if I suddenly found I had a short time to live…What would it be like to sit in a doctor’s office and hear a death sentence? I had entertained those fantasies just like the next person. So when it actually happened, I felt weirdly like an actor in a melodrama.

I live at least two different lives. In the background, usually, is the knowledge that, for all my good fortune so far, I will still die of this disease...

But in the foreground is regular existence: love the kids, buy them new shoes, enjoy their burgeoning wit, get some writing done, plan vacations with [my husband], have coffee with my friends…What you do, if you have little kids, is lead as normal life as possible, only with more pancakes.

This blog quotes the essay extensively (and is the source for the excerpt here), but the whole thing is worth seeking out in The Woman at the Washington Zoo or the 2006 edition of the best American essays.

Illness and aesthetics

The radiation machine I visited in the cold state's largest hospital had a stained drop-ceiling made of weathered acoustic tiles. The various boxes that shot out the lasers or infrared beams or whatever positions the machine looked tacked up and were linked to the electrical mothership with vinyl wire mold. A faded poster of golden retriever puppies peeking out of pastel flower pots was taped to the ceiling directly above the bench where patients lie. I guess the idea was that people could distract themselves with fluffy puppies while their flesh burned.

*

Flash to New York City, and Memorial Sloan-Kettering's Rockefeller Outpatient Pavillion. Ah, the Pavillion. Although I have not visited Sloan's radiation machines, I feel certain that a puppy poster would be immediately ejected as damaging the carefully crafted feng shui: the bubbling fountain, the blond asian woodwork, the thick carpets, the views of midtown, the sleek one-shot coffee machines. If you are exiled to the (decidedly non-swanky) Memorial Hospital for a more serious procedure, your sensibilities are assaulted by linoleum, but you are given a kimono-like robe that feels way more spa than hospital johnny. These touches, combined with the center's carefully cultivated intellectual aura, make you feel like you're really going to do the business on the cancer, no matter how jerky your actual doctor may be.

Attention to aesthetics, argues Virginia Postrel in The Atlantic, is an increasing trend in health care that may improve patient outcomes:

Such “evidence-based design,” which draws its principles from controlled studies, is the great hope of professionals who want to upgrade the look and feel of medical centers. Much of this research follows a seminal 1984 Science article by Roger S. Ulrich, now at the Center for Health Systems and Design at Texas A&M. He looked at patients recovering from gallbladder surgery in a hospital that had some rooms overlooking a grove of trees and identical rooms facing a brick wall. The patients were matched to control for characteristics, such as age or obesity, that might influence their recovery. The results were striking. Patients with a view of the trees had shorter hospital stays (7.96 days versus 8.70 days) and required significantly less high-powered, expensive pain medication.

And a bit more on the problem with the way most hospitals look and feel, even many of the fancy remodeled ones (who build glowing atriums, but leave the rooms where care happens shoddy):

If you work somewhere every day, after a while you don’t notice eight-year-old snapshots and peacock feathers too tall for the space. The ad hoc, staff-oriented decorating that fills an aesthetic vacuum can be worse than bare walls. Lee Mequet, a Southern California real-estate agent, recalls a chemotherapy visit with her husband, who was so ravaged by lung cancer that his skull and bones showed under his skin. The treatment room, she says, was “decorated for Halloween, with pumpkins and paper skeletons, and the tragicomic horribleness of the images made me want to rip the fucking things from the wall.”

I have my problems with the article, but it's worth reading. I cannot endorse enough the idea of reorienting hospitals toward individual rooms, especially those for serious illnesses. I don't understand the ramifications in terms of cost and care, but I know there are huge upsides in this for patients. Curtains don't always cut it.