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:

Rainy day, sunny spirit

Charlee Hawkins of Gilbert, Arizona, continued to play golf and piano despite the amputation of her left index finger and part of her palm. She defied epithelioid sarcoma with laughter, bravery and grace until she died three years ago at the age of 17.

This January 21, 2008 story from the East Valley Tribune sketches her resilience and sense of humor:

Despite her missing finger, Charlee never hid her hand. She relearned how to play the piano with nine fingers.

When Charlee first found her bump, she named it "Humpy Humperson." After her finger was amputated, she changed that to "Stumpy Stumperson."

Her friends nicknamed her "Nine" after the amputation. To show support, her family and friends wore shirts with the outline of two hands, with the left hand missing the index finger.

On Jan. 21, 2004, Charlee celebrated her first "handiversary." It had been a year since she lost her finger.

Her family made hand sugar cookies, and Charlee was the "doctor" who cut off the index finger of each cookie.

"For her it was very appropriate," Char Hawkins said.

Her family has continued the tradition. Monday marked five years since Charlee's amputation.

Friday will mark three years since Charlee's death.

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.

'Is me monster?'

Despite the headline, this is not going to be an outpouring of my long-brewing thoughts about my efforts to not feel ashamed about my illness -- a tougher fight than it sounds, particularly when someone is shooting radiation into your crotch. 

Instead, I want to quickly make two links that emerged from a pleasant recent lunch conversation. (Thanks again, Elise and Lee!)

The first link is the New York Times on crying doctors. I was jokingly holding forth about how difficult a physician's emotion can be for a patient, particularly if they're leading the way. Then this article came out and I thought I'd throw it up here.

I'm not coming out against emotive compassion here. I want to be special. I want my doctors to respond to me on a personal level (as I respond to my best physicians), and it's a sharp rejection when they don't. That said, it's scary when a doctor seems more visibly upset about something than we are. I generally prefer to stay composed in the clinic room -- but, on the other hand, I've been led to my truest emotional understanding of my situation by a particular physician's openness with his personal feelings and willingness to ask questions about mine. Dr. S, my oncologist, would rather skate by these issues; Dr. Bow Tie, my other oncologist, is a cyborg with some bugs in his human emotion simulation software.

Second lunch link is on the Cookie Monster's painful attempts at introspection. Cookie Monster Searches Deep Within Himself and Asks: 'Is me really monster?'

Authentic yet bathetic

Dang, that last one was maudlin. Did it sound that way, or just feel that way, I wonder?

I was embarrassed and moved to delete it, but changed my mind on the confirm screen, because it was a real emotion (and because Sachin left a comment -- hello!), albeit an emotion that isn't generally part of the Culturally Approved Good Attitude Kit™ for people with cancer. The truth is, the kids are the absolute worst part of this; or rather, the worst part is thinking about me gone from them, them gone from me, me not knowing at some point what comes next in their stories. Torture.

But this is also true: They provide so much pleasure and inspiration to live each day. They distract me, delight me, get me off my butt. We dream together. They blast through my reveries with their dirt clods and chess games and princess parties and cone jet full. They make me want to leave some kind of legacy for them, even if it's just faint memories, stories, letters, made-up words and silly voices.

I have known several kind, successful, mostly happy people who lost parents in childhood. My mother for one. Even though I can't imagine my life without my close relationship with my own parents, my kids will be OK if they lose me, but there's no question that they are suffering now and will suffer more in the future.

So I get maudlin, yes I do. I quote Marjorie Williams below on the strange feeling of inauthenticity an illness like this brings, she calls it feeling like an actor in a melodrama. I have the same queasy sensation of unreality (and all-too-much reality), a weird sense I'm playing a part in a particularly amateurish school play. I don't know the lines, just the contours of the plot, and yet I'm up on stage anyway. My consciousness is split between the part of me playing the sick guy role and the part of me that still feels well and is watching the whole fiasco with disbelief. 

On bad days, sappy sentimentality feels like the most authentic emotion I have; it's the thing that the sick guy actor and the rest of me can agree on. I try to have a nice wallow, then haul myself out with a joke or some work or some reading. If I can't break the reverie, the kids or L. usually can. Bless them.

Not to mention that L. makes one hell of a pancake.

For whom the dirt sparkles

T. is four-and-a-third-years old and can be very firm. Last week we were at the playground and she began scooping up dirt and rubbing it into her skin. (We go through a lot of bubble bath here.) She applied the dirt earth once, twice, then held her arm up into the sun. The light caught the silica in the earth and her skin shimmered. Despite the careful preparations, she was still delighted: “Look, daddy, it sparkles!”

Then she held my bony wrist in both her small hands. Her wrists still have hints of baby rolls and folds. She dived back into the dirt and rubbed it into the back of my hand. When she was satisfied with the coverage, she cocked her head to the side and squinted. “It doesn’t sparkle for you because you’re sick,” she declared.

My heart lurched. We hadn’t raised my hand to the sun; it wasn’t a fair trial. “No, look,” I said, “it just needs some light!” She looked directly at me. “No sparkles for Daddy.”

*

The next day, fortunately, she cured me with her purple-and-pink magic wand.

'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.

The force through the green fuse that drives the flower

I've continued taking Temodar without any incidents or notable side-effects. I'll spare you the play-by-play.

*

Spring has arrived at the (not so) cold state, and I felt well enough to spend a gratifying chunk of the weekend outside with little B. and T. They rediscovered their swing set, which I built a few years ago, and the pushing and swinging soon segued into dragging out the hose and creating a gauntlet of water (using B's preferred "cone jet full" setting on the hose nozzle) for them to swing through. This, predictably, segued into me getting soaked with water.

B. has a new mountain bike; T. has gone into action on her brother's old all-terrain trike, pumping her way up the driveway like Lance Armstrong on Alpe d'Huez, and then rattling down at delightful, terrifying speed. We took the kids out on Sunday for shoes (sort of successful), and brunch (highly successful), then logged some family time in the yard for more swinging and cycling.

*

The velocity of spring is amazing. The trees are budding out their leaves, and over the weekend they went from looking like green haze around the branches to becoming corporeal, even thick in spots. Life is strong.

ES Prognosis (The Median Is Not the Message)

Above is a chart reviewing the "prognostic literature" on epithelioid sarcoma. The chart and the papers its data came from may come in handy for those trying to figure out how they are going to survive this disease, and what factors may influence that survival.

But before you enlarge the chart, read "The Median is not the Message," a short essay by the late Harvard evolutionary biologist Stephen Jay Gould. It is, he writes, "a personal story of statistics, properly interpreted, as profoundly nurturant and life-giving..." Gould was diagnosed with abdominal mesothelioma. He read up on the disease and found a median survival time of 8 months -- he was crushed at first, and then he started thinking.

The problem may be briefly stated: What does "median mortality of eight months" signify in our vernacular? I suspect that most people, without training in statistics, would read such a statement as "I will probably be dead in eight months" -- the very conclusion that must be avoided, since it isn't so, and since attitude matters so much.

Gould lived for 20 years after his treatment, and died of something else entirely. So much for that eight-month median.

The chart here offers no context, and it's important to realize that the results are skewed in all sorts of ways: some of the data is too old, some of the groups of patients were much sicker than others, some of the groups are too small... Even within a given series (group of patients), results can vary hugely by the type of treatment (wide surgery before mets). 

I have to laugh a little here, as I encourage people to not misread the data and become too discouraged, because shortly after my own diagnosis, I skimmed a bunch of prognostic studies myself and completely misread the data -- in my favor. My erroneous optimism was quickly checked by reality, but my strong initial sense that I could and would survive five years, ten years, and possibly many more was a huge help in the early days of adapting to the illness. I should say that this kind of optimism is appropriate to many people diagnosed with epithelioid sarcoma; what I didn't realize then was that my prognosis was worse than the average ES patient's because of the central ("proximal," in the lingo) location of my tumor, the likelihood that it had already spread locally, and the involvement of my lymph nodes. I'll elaborate more on positive and negative prognostic factors in a future post. 

But I still believe strongly in my initial impulse: The key is to get the right treatment and survive right now. Even if the disease boomerangs viciously back in five years -- one year -- who knows what options will exist then? The science is changing all the time; too slowly, yes, but it is changing. Even since August 2006, when I was diagnosed, several promising trials have launched, and one strong effort (yondelis, or ET-743) has apparently bombed, at least for ES. 

The chart comes from an article in Cancer titled Epithelioid sarcoma: Still an only surgically curable disease.

Temodar, so far

I am about to take a capsule that cost my insurance company $240.90. (Fortunately, it cost me 95 cents.) It's a big capsule, aqua blue and white, emblazoned with a couple of thick fill lines that make me think of a bee's belly. To resolve confusion, the top reads "TEMODAR" -- such service for 240 bones. I'm sitting here trying to find something remarkable, noteworthy even, in the capsule, but it's just a capsule, and I'm just stalling. The remarkable things are the cost, hope and fear; and I'm not feeling qualified to comment on any of those just yet.

*

The first dose is always like this. The first time I received chemo -- a fairly toxic old-school combination of cisplatin, mitomycin and adriamycin -- I was terrified. The event felt momentous, and yet there I was sitting in an armchair in a big room looking at other people feeling various unknowable degrees of sadness or boredom or optimism. I worried about throwing up when the drugs hit me, movie style. I worried that the nurses had missed the vein, or that the vein would fall apart allowing caustic chemicals to spew painfully into my body. I worried, ridiculously, that one of these so-called vesicants (scary word) would get loose and I wouldn't realize it quickly enough. The actual event, of course, was efficient and routine: no hurling, not much of anything in public. But one thing felt momentous: Adriamycin is delivered through a "push." A nurse connects syringe to line and looks intently at watch or clock to squeeze the drug in over 90 seconds or so. I sat there staring as the bright red drug moved by infinitesimal degrees into my body. A couple of minutes can seem like a very long time.

*

I swallowed the Temodar after L. gave the capsule a little pep talk ("Go get that cancer!") and now I'm waiting to see what happens. Like always, I'm inordinately paranoid about side effects. (The pharmacist didn't help. While we were working out our version of the hot dog/hot dog bun conundrum -- I was authorized for 21 Temodars at a time, but only six Zofrans -- I allowed that I hoped I would move on to a less badass anti-emetic. "Yes, but you don't want to throw up a pill that expensive," she said. "Zofran is one thing; losing a dose of Temodar is another." I don't actually want to throw up cheap pills either, but never mind.) My stomach feels jumpy, but it did before I took the drug. Nothing new develops. Eventually, I get bored and decide to sleep. Another first dose finished.

Because it's April and the water is trickling

Bob Hass won the Pulitzer recently. Here's an old one that E. read at my wedding and that I memorized a while back when I couldn't sleep:

Spring Rain

Now the rain is falling, freshly, in the intervals between sunlight,

a Pacific squall started no one knows where drawn east as the drifts of 

warm air make a channel; 

it moves its own way, like water or the mind, 

and spills this rain passing over. The Sierras will catch it as last snow 

flurries before winter, observed only by the wakened marmots at ten

thousand feet,

and we will come across it again as larkspur and penstemon sprouting

along a creek above Sonora Pass next August,

where the snowmelt will have trickled into Dead Man's Creek and the 

creek spilled into the Stanislaus and the Stanislaus into the San Joaquin and the San Joaquin into the slow salt marshes of the bay.

That's not the end of it: the gray jays of the mountains eat larkspur seeds, which cannot propagate otherwise. 

To simulate the process, you have to soak the gathered seeds all night in the acids of coffee

and then score them gently with a very sharp knife before you plant them in the garden.

You might use what was left of the coffee we drank in Lisa's kitchen visiting.

There were orange poppies on the table in a clear glass vase, stained

near the bottom to the color of sunrise;

the unstated theme was the blessedness of gathering and the blessing of  dispersal---

it made you glad for beauty like that, casual and intense, lasting as long

as the poppies last.

G.D.I

And the news wasn't good. 

Although the tumors hadn't spread, and there was no sign of anything on my lungs or other organs, they continued growing through the two cycles of Gem/Tax. So it's on to a new drug, temodar (temozolomide). 

This is an oral agent, commonly used for brain tumors and as a radiosensitizer. Temodar's record with soft-tissue sarcoma is mixed, to say the least. The idea is that this drug's relatively long cycle (six weeks of daily doses; two weeks off) will align well with my still relatively slow-growing epithelioid sarcoma. If Temodar stabilizes the disease, I will then hopefully enroll in Ariad's trial of deforolimus, which is seen as a promising alternative to "watching and waiting."

L. and I both left marveling at Dr. S's slickness. She delivered some pretty lousy news, and she did so smoothly. The strategy was something like this: 1) get the bad out there quickly; 2) emphasize the normal or positive findings; 3) immediately lay out the revised plan, emphasizing the deforolimus carrot; 4) slip in some bad news about temodar's side effects; 5) listen to my lungs and leave.

I'll start temodar later this week, if the preapprovals go well. (They should: I was previously pre-approved for the drug, so we're not starting from scratch.) The common side-effects are nausea, constipation and fatigue, so Dr. S launches new temodar patients with Zofran, one of the heavier-duty anti-nausea drugs. Hey! I've been telling everyone that this would be easy and you write a script for serious anti-emetics! Damn you, Dr. S! Foiled again by that wily physician....

*

The title of this post is honor of my younger brother, C, who used to draw out "God... Damn... It..." into a kind of mantra, angry but also rueful, dispositive but also somehow searching. I took the soul out of it by reducing it to a compact G.D.I so I could allude to the idea but not pollute the mouths of my kids any more than I already have. 

Anyway, that was pretty much my reaction to the results: God. Damn. It. 

Pictures

Scans today, an MRI with a CT chaser. I hope these will show that my current chemo regime -- gemzar and taxotere, which I am getting for the second time -- is working. 

We're lucky here in the cold state in that we rarely wait even 24 hours to get the results of studies. I'll find out the results of mine first thing tomorrow morning. Given this kind of consideration, it's churlish to complain about hospital arbitrariness; but, being a churl, I'll complain anyway. I've probably had 10 CT scans with contrast since being diagnosed, and before all of them, I've been told to restrict myself to clear liquids for six hours beforehand. Today, and henceforth, I am permitted to enjoy a "light lunch" before the study. What changed? The machine is the same weatherbeaten and sticker-bedecked Philips as always. The IV contrast, I suppose, could be different. But I suspect a policy changed, perhaps on the basis of accumulated evidence. And it makes me wonder -- at other centers, would I possibly only have to drink one liter of contrast? Or would I have to choke down three?

In any event, being able to eat a little makes the test easier, though it's hard to find a culinary match for banana-flavored barium. The policy change I hope for comes from Australia. My e-mail friend A. tells me he is allowed to listen to an iPod during his MRI exams. No idea how that works. I would have thought your head would explode. 

Death spiral (spiral)

I'm slipping into actual blogging, which I want to avoid, but I have to show this graphic from National Geographic because it is so apropos... and good.

It apparently goes through surges of internet popularity, and deservedly so: The subject is gripping, the design is great and the editorial choices are smart. What makes it for me is the "Total Odds of Dying 1 in 1 (100%)" which is simultaneously a joke, a sad truth, and scale-setter for the "death spiral" graphic.

Click on the image to make it readable or just check out the real thing at Ways to Go.

Department of theodicy

Thank God I... have an eating disorder!

The spam press release below, cut but not otherwise changed by me, explains:

THANK GOD I
Most controversial book ever launches later next week

New York City, NY “Rape, Cancer, Death, and Divorce. Can you imagine being grateful for any of these things? Finally a book that transforms the human experience according to creator of the Thank God I series”, John Castagnini.

“Thank God I, soon to be the largest inspirational book series since Chicken Soup for the Soul, unites a world-wide community of individuals to share personal stories of gratitude for their past adversities. Thousands of writers will reveal gut-wrenching accounts of how they transformed perceived crisis into blessings” added Castagnini.
...
Thank God I have Cancer, Thank God I was Raped, Thank God I have an eating Disorder
For more information see www.tgibooks.com

I'm not anticipating a hit.

My dark materials

There's been a hounddoggy quality to recent entries that I'd like to reverse. I'm starting to feel like Harry (to celebrate my 1980s-ness a little):

Harry: Do you ever think about death?

Sally: Yes.

Harry: Sure you do, a fleeting thought that jumps in and out of the transience of your mind. I spend hours, I spend days...

Sally: And you think that makes you a better person.

I have a lot of other things to talk about. Really.

Footwear, stories

I am hoping to throw away a pair of boots tomorrow.

They are sitting in the playroom under a chair; neither toe nor heel sit evenly on the ground, and what was a rich cordovan leather is now murky with filth and dust or, at the toe, worn beige. I know the insoles are gone, and if you inspected the toes, I suspect you'd find mice pellets and fluff. I haven't worn them for years, and still the boots span some of the biggest happenings of my adult life: "Testing" products for a national magazine; hiking with my now-wife in New Mexico, the red cliffs of Sedona, around the Grand Canyon. Walking with her another time up a steep pitch in Vermont and being surprised and delighted when she threw off her clothes and plunged into a mountain pond, truly, that wasn't very remote at all. Leftover guacamole after. One misty day slogging through quarry gravel to get to a beavery slick of a pond and hearing from the man going the other way that a moose had "just" swam by. These boots have done things; they have stories.

*

I think about stories a lot these days because I am trying to capture some of my life here and elsewhere and I find that I am not very good with stories. Jokes, yes. Observations, sure. Laments, complaints, odes -- fine. But beginnings, middles and ends, with me as the star, are hard to come by. I'm maybe not the guy you want at your campfire.

**

I read Philip Pullman's His Dark Materials trilogy when I was first sick during a week that shimmered around the edges with fever. I read the triology as quickly as I could, until an episode near the climax of the final book ripped me open. The book's protagonist ventures into the world of the dead to free a friend and finds it a gigantic sham; there is no endless reward or baroque torment, just hopeless stasis where harpies torture wispy ghosts by droning miserable recitations of their dead victims' mistakes and miseries. Then it emerges that the harpies will escort the dead out of stasis and toward resolution -- for a price. A true story of real life. The message, one of them, is that we all have stories, and that that they are central. They may be the only thing that can save us. And I cried and cried when I read because I had no idea what my story was, and an uncertain amount of time to find it. Forget "the" story of my life: I couldn't even summon a story. 

*

The boots: When they were barely scuffed, I wore them to a photo shoot in hills above Malibu for a magazine I was working for. The two models were playing a couple who were having a very fun trip with a suspicious amount of stuff. I buzzed around and fetched things and gossiped as the photographer and stylist and assistant did their work. The male model, a decathlete, was an ass. The woman, who was just a hair shorter than I was and played the violin, was not. She was lovely, of course, but not intimidatingly so and fun to talk with. She was a model, but not a model; no dreams of stardom here, just an occasional few extra bucks for college. I stayed a couple of hours and found out later that she asked about me. More than once. She had told another editor that I was kind and funny, and hearing that, swelling with that praise, made me love her a little, or rather the idea of her, or rather the idea of her and me.

I never saw her again. (I told you, I don't know that kind of story.) But the flattery and feeling of possibility left in the wake of those few hours in the woods wearing those stiff boots is enough make me redden now, worlds and time later. And part of me thinks -- this can't be one of my stories, it's embarrassing and nothing happened. But it is.

The boots are going in the morning. The story stays.

What does sarcoma feel like?

After my diagnosis, I began making plans for a second opinion. For reasons I'll discuss later, I ended up with an appointment at Memorial Sloan-Kettering Cancer Center in New York, and in preparation for that visit I spent a bit of time on their soft-tissue sarcoma website. 

One particular entry on their FAQ grabbed me:

Is sarcoma painful?

No. Pain is uncommon in sarcoma unless it is very advanced or in special rare sites.

I was (and am) fascinated by that flat "No." 

Sure, there's a little hedging with the advanced and the "special rare sites" business -- what part of the human body, by the way, is "special and rare," where is the sarcoma Area 51? -- but the hallowed Sloan-Kettering is basically saying soft-tissue sarcoma doesn't hurt. 

Well, yay. Caught a break on that one.

Sure, it doesn't hurt -- it doesn't hurt in the way that I imagine that the initial impact of a bullet doesn't hurt. The tearing and rending of flesh part hurts; those darn complications hurt. But initially, you know, it's not so bad. Shock covers it.

I could go on making easy jokes, but despite some stretches of what I would call pretty significant pain, I think there's probably more truth in Sloan's glibly reassuring authority than I am crediting. 

Most of my own pain has been secondary to treatment (radiation was very difficult, as were some of the surgeries) or has resulted from the advancement of the disease. Epithelioid sarcoma is notorious for being diagnosed late -- often as long as a year after showing symptoms -- because it masquerades as something benign like a wart or a shallow little lump under the flesh. The archetypal story is someone noticing a hard little bump on a hand or a foot, eventually getting seen by a dermatologist for some sort of local treatment (perhaps "drainage," or even excision), then the bump returning and/or spreading as doctors and patient get progressively more concerned about the condition and eventually arrive at a correct diagnosis. At one Italian hospital, 29 of 54 ES patients waited longer than six months for diagnosis. From what I've seen in other papers, that kind of delay is fairly typical, maybe even better than average.

When my own (pelvic) bump shifted into high gear, I started feeling a moderate, throbbing pain most nights at about the time I wanted to go to bed. It was enough to make it difficult to sleep, but ibuprofen was enough to take the edge off it. Later, when the tumor spread to the lymph nodes in my groin, I felt a kind of itching, irritated soreness. Sadly, I had no real doubt that the disease had spread before my biopsy -- I could feel its presence, as if something was tentatively but persistently trying to scratch its way out of me -- but it wasn't what I would call painful. If I had to rate the pain, and you know how I struggle with that, I'd put my initial few months with ES at about a 4 on the scale.

So Sloan-Kettering's FAQ is simultaneously ludicrous -- and, maybe, accurate. One thing that interests me about it, which is probably the reason those terse lines lodged in my head for nearly two years, is that I never thought the FAQ's blunt reassurance about pain was accurate, and yet, despite never assigning credibility to the reassurance in the first place, I was reassured in spite of myself. OK, hell, I thought back then, it's going to be tough to get rid of this thing and it will probably get me at some point, but at least it won't hurt.

Faces and death

I can't look at these widely linked paired photographs of hospice patients shortly before and after death right now, but I saw one set accidently and it was beautiful and moving.

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.

Chemoretailtherapy

My lungs, apparently, improved overnight, so I was deemed eligible to get a dose of gemcitabine and docetaxel. This is the last hit of my second cycle, and I was glad to get it in. Now we wait a week and scan to see how things are going.

After I finished chemo, L. and I went shopping. My glasses disappeared a month or so ago when I went into surgery, and I've been wearing a pair of frames I thought were very cool in 1999. Yes, I'm hitting on all cylinders, appearance-wise: weight loss has given me a skeletal mien, my hair is falling out, but it's all OK because I can't see myself that well with my geek-glasses. So we went shopping, which I normally hate.

But it turns out that while I say I hate shopping -- and I have all kinds of boring rants to prove it, from the irresponsible materialism of our culture to the luxuryification of previously mundane objects like blue jeans and clothes dryers (this really bothers me; not because I don't like diva large appliances, but because I do) -- I really, really like stuff , and if someone is willing and able to sell me that stuff with intelligence, insight, humor and civility, I actually don't mind shopping at all. It was painless, and I will soon have a nice pair of glasses, thanks to these folks. Best of all, the hospital is paying for them.

Sarcoma for dictators

When it was early in this whole thing and L. and I were repeatedly lamenting the unfairness of it all -- why me? why not? damn you, cruel and indifferent universe! -- we more than once speculated about who we would give the sarcoma to, if only we could. I didn't think through the ethics of the transfer, but my base criteria were that the person needed to be really bad and giving them an incurable illness had to have the potential of making life better for other people. I considered war criminal Dick Cheney; Sudan's Bashir; Kim Jong Il; the guy in Uzbekistan who boils people alive and a few others. At that time, I decided that Robert Mugabe of Zimbabwe was about the most deserving person I could think of for my epithelioid sarcoma.

Samantha Power wrote in a 2005 issue of The Atlantic:

The country's economy in 1997 was the fastest growing in all of Africa; now it is the fastest shrinking. A onetime net exporter of maize, cotton, beef, tobacco, roses, and sugarcane now exports only its educated professionals who are fleeing by the tens of thousands. Although Zimbabwe has some of the richest farmland in Africa, children with distended bellies have begun arriving at school looking like miniature pregnant women.

How could the breadbasket of Africa have deteriorated so quickly into the continent's basket case? The answer is Robert Mugabe, now seventy-nine, who by his actions has compiled something of a "how-to" manual for national destruction.

Things got a lot worse from there. The inflation rate in the country is now something like 66,000 percent.

But Zimbabwe held elections recently, and Mugabe's party has lost the Parliament. There may be runoff for the presidency, and it may be brutal, but perhaps not. I'm hoping that the dictator's disastrous reign will soon be at an end.

Update: Damnit, the reporter who wrote the story linked above was arrested during a Mugabe crackdown. This isn't exactly putting me back into love for humanity and reverence for life mode.

Body in mind

The night before last, I climbed into bed with my daughter and a sharp pain started jangling around behind my shoulder blade. I ignored it and went to bed. It was still there when I woke up. As I went about my business, it gradually began to dawn on me that hey, the shoulder pain is still there; there's some pain in my rib cage; and if I'm honest with myself, I'm breathing even worse than usual. 

Damn, I have another pneumothorax.

So what do I do? It's late in the day, hard to get admitted and maybe too late to see an interventional radiologist. Getting a chest tube in the emergency room isn't the worst thing that has happened to me, but I'd prefer not to repeat the experience. (If it becomes necessary again, at least this time I will know to not let the doc show me the tube kit, which includes a foot-long, panic-summoning needle inserter.) I'd like to call the doctor, just to be safe and all, but if I call liability and common sense are going to send me spiraling into medical intervention, perhaps up to including hugging a vinyl pillow and half suffocating under a vinyl drape as someone shoves a tube through my ribs with no anesthesia. We decide not to call; we'll deal with this in the morning.

*

I'm so sure that I have another pneumothorax, so convinced, that I start preparing for an admission. I take a shower and shave, so I won't look like a homeless person within minutes of being admitted into the hospital as usual. I pack a book or two, my ipod, a laptop with a couple of movies and a newly ripped audiobook. I even charge my cell phone. For me these are expedition-worthy preparations, so I start to convince myself that my lungs are probably fine since I'm actually somewhat ready to go to the hospital.

*

One of the many problems with a prolonged illness is that it completely chips away any sense you might have of bodily well-being. I no longer take much pleasure in my carcass; it's more like a very old car on a very long trip, requiring constant monitoring of tires, radiator, alternator, brakes and and a half-dozen or so suspicious rattles and wheezes. This kind of feeling is near universal. Burnt by strange pains and buffeted by bad news, cancer patients are at risk of reading any stitch in the side or headache as evidence of metastasis. 

I once wrote a note to someone on the online sarcoma community who was worried that his backache might be evidence of epithelioid sarcoma mets to the spine; I said, essentially, have your doctor check it out, but ES rarely spreads to the spine, so you probably shouldn't worry until your doc tells you to worry. You probably have a backache. It happens. (I was, and am, a big believer in outsourcing anxiety.) Another patient immediately added that ES can metastasize ANYWHERE and was capable of ANYTHING. Thanks, lady. So much for my little dutch boy attempt to reassure. The guy, of course, just had a backache.

*

Cut to this morning at the hospital: I do indeed have a loculated pneumothorax -- a couple of mini air bubbles that have managed to form despite my pleura being tacked to the chest wall by pleurodesis. So no chemo, but no admission either. The plan will be to look for improvement tomorrow and hopefully proceed with the chemo. If the situation is worse or the same, I may be looking at some combination of admission, chest tube and VATS. In the meantime, I get to sleep in my own bed and eat the lamb that P. brought over.