Kevin Foley, 1971-2009*

If I have a quibble with this blog it’s the pseudonym “Sick Guy,” never the way this brilliant, strong, beautiful man lived. Cancer silenced Kevin’s voice on November 19. Those who have followed his travels through illness have a sense of how eloquent and artful his writing was, of his gifted mind, incredible wit, spirit, and his courageous self-exploration.  He could also cook and curse with great flair, give the most surprising and intuitive gifts, tell you anything about politics or Cal bear football. And he loved me, to my great fortune. His family and closet friends (and new Springer Spaniel puppy, Berkeley) were his life. Missing Kevin will now be a large part of ours.

To the people who have come to this site again and again, the strangers who are now friends, the people who have left comments of such heartfelt encouragement, the silent but loyal readers, your support has meant so much to Kevin and to me.

Thank you for sharing this experience with us. It’s a road no one should have to take. I wish I could write a different ending.

L.

*A memorial service in celebration of Kevin’s life will be held at the Unitarian Universalist Society of Burlington, Vermont, on December 5 at 4 p.m.

Burlington Free Press obituary: http://bit.ly/6DlMLn

Los Angeles Times obituary: http://bit.ly/7E3wAe

Zoo York

I shocked myself, but I am going to New York tomorrow for a brivanib nursing visit.

I was supposed to go last week -- two days after the chest tube was out. The idea of doing that was so appalling, so paralyzing, so beyond my mental and physical capabilities, that I didn't consider it. What I did consider, long and hard, was dropping out of the trial. When I think about quitting, when I think about staying home tomorrow and for my as-yet uncertain CT scan, which could happen as early as next week, I feel this pulse of relief and life. So what the hell am I doing? Part of it is my compulsive need to finish things. Part of it is that I had my best scan in terms of measurables the last time around. (Obviously, other stuff didn't work out so well, but I don't blame brivanib for that.)

As you'd expect from the lack of posting, I've been feeling terrible and concentrating on pain management, which has taken a huge toll on my alertness. Things have improved enough that I'm hoping I can get through the next 40 hours -- and even have a little fun doing so.

Another brick in the wall...

B., like me, loves Legos.

But his pleasure is mixed with pain.

Most of his sets are themed, one-way efforts -- build a particular helicopter or construct some specific diorama. He prizes these; more so if they involve Star Wars. They make him miserable; most are still just slightly out of his reach, so he's left with a half-dozen sets in various phases of constructions, most of which with some missing pieces from the orgasmic initial few moments when he tore open the box. The Legos he has fun with are the generic unbranded, unplanned bricks. I bring all this up because I'm really feeling his pain. I want his room clean, yet his idea of room cleaning involves beginning to assemble a lego kit. He fails, leaves it on the floor or the table, and the room is messier than other. I also bring this up because it's something of global problem, one that says something about how kids live today:

In the United States, Lego’s biggest market and the biggest toy market in the world, games with themes like “Star Wars” and “Indiana Jones” were among the reasons Lego sales jumped 32 percent last year, well above the global pace. But experts like Dr. Jonathan Sinowitz, a New York psychologist who also runs a psychological services company, Diagnostics, wonders at what price these sales come.

“What Lego loses is what makes it so special,” he says. “When you have a less structured, less themed set, kids have the ability to start from scratch. When you have kids playing out Indiana Jones, they’re playing out Hollywood’s imagination, not their own.”

Even toy analysts who admire the company and its recent success acknowledge a broad shift. “I would like to see more open-ended play like when we were kids,” says Gerrick Johnson, a toy analyst at BMO Capital Markets in New York. “The vast majority is theme-based, and when you go into Toys “R” Us, you’d really be challenged to find a simple box of bricks.”

(via Kottke)

Weak as a kitten

The post title is a lie since most kittens have more spunk than I do at the moment, and possibly more strength.

I was released from the hospital on Aug. 29, and the weekend passed in a bit of a daze, but not completely. I was pleased that merely being at home made many, many, many times more active than in the hospital, even when I was deliberately conserving energy.

The fact that I have atrophied so much of my physical strength over the last three years means that it only takes 15 very sedentary days to decimate that meager base. So I'm trying to walk around more as part of a de-kittenifying effort. I'm thinking about setting a few activity quotas for myself and consciously trying to make myself get in, say, 10 stair climbs a day, 15 walks across the house, 5 minutes spent doing some of my stretches for my back leg and thigh. I once worked for several fitness magazines, and one thing I remember from the exercise physiology literature is that the less strength you have, the faster you can gain more. Put another way: The nice thing about starting from nowhere, even if you have cancer, is that you can make at least a little progress very quickly (that is, of course, if your health isn't in some kind of crisis).

Meanwhile, I still have the odd sensation of walking down stairs and feeling my legs get progressively weaker until the end when they become, essentially, numb dead weight. After eleven stairs. Eleven. I'm watching out for myself because there is no way I am going to blow all the fighting I've done with a household accident. (On another note, so many of our friends are runners and cyclists and skiers. It's not that I spend a lot of time actively envying them, but it's painful for me to imagine having access to all that strength and endurance and grace. It's a beautiful thing; and easy to take for granted. At this point, I would be so happy to walk to the corner store. Or sprint across a grass field with a kid and a dog. Our bodies are gifts.

We're still negotiating my return to the brivanib study. The doctor's original suggestion -- come to New York tomorrow -- was a non-starter and is now withdrawn. I'm not sure what kind of arrangements we are going to make for the next two visits, but I do know that I am going to make my point as clearly and firmly as possible (up to the point of withdrawing from the study), hoping they will stretch the rules at as much as possible. I feel peaceful about whatever happens.

More for archival purposes than anything else, a quick rundown of what happened medically: I left the hospital with a full-sized surgical chest tube and followed up as an outpatient with the surgeon three days later, on Monday. The valve attached to the tube (a Pneumostat) makes it easy to check for an air leak; when the surgeon did so, my lung appeared sealed. So he pulled out the tube. (Ow.) I had a couple of awful days where I was taking lots of pain killers and lying around semi-responsive for most of the day. The chest tube actually hurt more out than in -- no idea how that works. Today I woke up feeling much better in terms of pain, breathing and energy.

Sweet ice cream

Nobody's asked the question, so I haven't tested my answer, but if someone asked me what they should read after a cancer diagnosis, I would be strongly tempted to reply, "Atul Gawande."

Gawande is a surgeon and not an oncologist, and he is animated by health policy and procedure, which aren't usually the first concerns after diagnosis. But, as his editor at The New Yorker says, his pieces open like umbrellas, and the click of understanding that comes along with them has, for me at least, made the culture of physicians and hospitals more comprehensible. Understanding more about how doctors think (and how yours might frame crucial medical decisions for you) is a practical example of why Gawande is so useful to patients. But Gawande is a literary writer, and reducing his work into some sort of tool (even a tool so useful as an umbrella) cheapens it. The understanding and the pleasure he offers are the real rewards.

This month's Harvard Magazine has a profile of Gawande's life and work I wish I had written.

When Gawande began writing for the New Yorker, the Brigham’s public affairs department wanted to see each piece before it was submitted. “No way was the New Yorker going to allow that,” he says. “[Michael Zinner, Brighman and Women's chief of surgery] stepped in and said, ‘I’ll take responsibility.’ Then he said, ‘You don’t have to show it to me.’ ”

The two men share a fervent belief that pulling back the veil on medicine will do more good than harm, even if it means pushing transparency’s limits right up to the edge of lawsuit territory. “What is the alternative to understanding the complexity of the world?” Gawande asks. “It’s denying it. There’s no way that’s a successful strategy.”

Released

I've let it get too late to say much of anything, but I can say that I left the hospital earlier today and it feels great. My legs are groaning from underuse -- I knew it would have been a good idea to walk some laps along the ward at some point instead of pitching myself to my knees with the utmost dignity trying to negotiate one step here -- but everything else is purring. I'm feeling like we did a really great thing for me by getting this tune-up, and I'm ready to start back getting into life. Part of re-entry included pizza from a nearby farm's wood-burning oven, eaten upstairs on a floor picnic with the kids. I highly recommend this for both therapeutic and gustatory reasons.

It probably seems implausible, but I'll have you know that I'm refraining (for now) from commenting on what I thought was a pretty juicy Kennedy article in today's Times. A good piece in the sense that it raises some interesting policy issues while offering some Doctors Behaving Badly-style color. For those who have read it, doesn't that guy from Duke sound bizarre? I also enjoyed the sniffy M.D. Anderson dude. Physician, heal thy ego.

That squirrelly placebo effect

via Marginal Revolution, a short piece drawing a distinction between two forms of placebo effect, a lesser-known statistical type, and the other, more familiar form involving psychological beliefs and expectations. It's a subject that's been kicked around a little bit lately because there are some reports that the placebo effect in drug trials is getting stronger.

Placebo has strength in numbers (Mind Hacks):

Because the statistical concept of placebo is drawn from the study data, the study itself has an effect.

For example, the strength of the placebo effect is measured relative to the active treatment. The Wired article says that placebo is getting stronger, which is another way of saying that the difference between placebo and the drug is getting smaller.

It turns out that the more rigorous the study the less strong the drug effect is, or, in other words, the stronger the placebo effect.

For example, we know that better designed and higher quality studies show smaller drug effects. This includes things as simple as randomisation. If your method for randomly allocating people to groups is more susceptible to bias, it's more likely to produced biased results. Better randomisation improves the placebo effect, again, nothing to do with expectancy or belief.

So one reason why the placebo effect might be increasing is that studies are just more rigorous these days.

 A bit of a long clip, but there's more there if this subject interests you.

'After Diagnosis, Determined to Make a Good Ending'

Edward Kennedy's approach to the end of his life:

“I’m still here,” Mr. Kennedy would call colleagues out of the blue to say, as if to refute suggestions to the contrary. “Every day is a gift,” was his mantra to begin conversations, said Peter Meade, a friend who met Mr. Kennedy as a 14-year-old volunteer on Mr. Kennedy’s first Senate campaign. 

Some patients given a fatal diagnosis succumb to bitterness and self-pity; others try to cram in everything they have always wanted to do (sky-diving, a trip to China). Mr. Kennedy wanted to project vigor and a determination to keep on going. He chose what he called “prudently aggressive” treatments.

Goodbye, Sen. Kennedy

Senator Kennedy died Tuesday night, a victim of a malignant glioma, the terrible brain tumor which had kept him away from the health-care bill where so many of us has hoped he would conjure his legislative magic one last time.

He was 77.

To say the least, he was a complex man -- for me, growing up either in or on the fringes of conservative Orange County, California, his name was a joke, a sure laugh line, a sort of argument-ender that more confident kids would throw at me. For much of his life, his personal life was worthy of that opprobrium; his alcoholism and moral failures are well known. It's fair, I think, to remember Mary Jo Kopechne today. But looking at the Senate now, and following the careers of legislators like Chuck Grassley, Max Baucus, Harry Reid, Kent Conrad and so many others, Kennedy's political genius and goodwill is ever more apparent. His list of legislative accomplishments, many bipartisan, is long.

And he gave us Obama. I'm truly convinced of that.

Richard Nixon, who earned himself far graver disgrace than Kennedy's in the decade I became aware of politics, did no similar work toward redemption, and yet he received it anyway. I personally don't believe that Kennedy needs redemption at this point. But perhaps his example can still help redeem our politics? I hope now that his life -- his scandals, his strength, his privilege, his tragedy, his inspirational and even ridiculous qualities -- will inspire us to do better.
*
August 28 update: I'm less sure than I was when I wrote this that Kennedy needed no redemption at the end of his life. In any event, it was crass to just throw the idea out there unsupported. Joyce Carol Oates, who wrote a novel inspired by Chappaquiddick, gives the idea the complexity it deserves in a Guardian essay.
*
Card Blue on Edward Kennedy:

Teddy

Ezra Klein gathered a nice collection of links to Kennedy material:

Some Ted Kennedy Links

August 25 hospital post

Still waiting on release. I broke this out from the the main hospital update post to increase my post count make it more legible. Today's question: Heimlich or Pneumostat... Heimlich or Pneumostat? Super-medical-student W., who apparently risks a testicle if he even discusses medical recommendations to be made by the surgeon, suggests doing research on this crucial pre-release question myself. So I do. After perusing a "helpful guide to mobile chest tube drains," I find myself cold to the whole subject. The Pneumostat sounds better to me, but who knows. At least this time I will know how to use the thing, which I didn't the first first time I left the hospital. Making the plan will involve having an X-ray tomorrow morning and discussing things with the surgeon. Residents have opened hope of going home tomorrow, but I'm too smart to be fooled. Right? Riiiight??

In other news, my formerly shy son B. practically mauled departing guest G. in hopes of convincing her to stay longer. (At least that's what I hope he was doing.) Little T. just cried a little. They are so out there with their emotions, and I spend so much time bollixed up.

Haunted

I told L. the other day that I wasn't scared of dying.

It must have sounded like total B.S.

I have cried to her about dying, after all. I have clutched her about dying. She has watched mortality get into me mercilessly at 3 a.m. She has listened as I have tried to isolate the worst parts -- is it the absence, missing the end of the story I so lovingly and hopefully commissioned? Is it the process, the pain that seems to increase until you're trading lucidity for every last bit of control and wakefulness that you fought so long for? And yeah: Before that point, I will certainly fear whatever nasty medical procedures I opt for in the name of comfort or buying time.

But categorically "scared of dying?" I don't know. Our porch steps, when sufficiently icy, may be more threatening than epithelioid sarcoma. Some horrors do not move me. I know is that I'm not going to hell for my petty crimes and misdemeanors (I'm not making fun of this idea in the slightest; I'm just not scared of how I've lived my life.) It agonizes me to think of not being with my family any more, but I know they will be OK without me. Even the scary pain -- at that point, lucidity is overrated. You get the shots.

But then there's the pain of my loved ones: my wife, the little precious ones. Yes, they'll be all right. They may well do better. But there's no morphine for them. It haunts me.

And there's the Zadie Smith problem -- the story you'd like to tell most, the big finale, is the one that, by definition, you cannot share, probably cannot even experience. Sometimes I feel like I don't exist if I can't tell L. something. It haunts me. (So I imagine haunting her.)

*

It haunts me--

I feel crushed beneath the awful weight of wasted time.

With this hospitalization, I feel a sudden burst of energy and purpose, much like the one that burst upon me when I first found out I had a life-threatening illness, but redoubled now because I feel a new urgency about the work I can do for my kids. I'll never finish those efforts -- so I'm not scared there -- but I'm a world-class time fritterer, and there's so much I want to say and do. My parents will be spending a lot of time here over the next several months. I want to spend real time with them; record our voices talking together both for the experience of it and, later, for B. and T. Can I manage.... wisely? Can I fill the right photo album and write the right letter and let go of what's superfluous and, in the midst of it all, leave time for a life for myself?

The challenges go on and on...

L. and I have a lot to talk about.

For complicated, lovely reasons, I never did finish the last Harry Potter, but I remain determined to do so.

My friends are crucial.

I want to invest more in this blog -- and in a new writing project I have hardly begun.

Selfishly, ridiculously, I'd really like one last time at Lucques or Chez Panisse. Or even Frontera.

Last (for now), but not least: This year, damn it, I am going to plant some bulbs.

*

I'm haunted, yes. But it's not all bad.

Hospital report the second (omnibus edition)

Ow. Ow. Ow.

I don't think I will update this much until I get better.

Why did the truck run over me?

*

Aug. 21 update: I'm still sore, but the lung has fully or almost fully expanded with air. It's also leaking air, which the chest tube is allowing to escape, keeping everything expanded. Everyone expected that it might take a while to get the lung fully sealed; the surgeon spent close to an hour scraping off the scar tissue that the previous pleurodesis left behind. I'm honestly not focused on a departure date -- I want this to last, darn it -- but early next week seems plausible. In the meantime, I'm sitting up in a chair, which seemed impossible even yesterday.

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Aug 22 update: I'm a little disappointed about how today has gone medically. Still leaky, so X-rays tomorrow. (Say "CXR" if you want to have a cool way to refer to a chest X-ray.) I've spent some time on my feet, which is good, less time in the chair, which is not so good. I don't feel like I made the jump ahead I did yesterday, but I certainly haven't regressed. I'm comfortable in terms of pain if I remember to keep up on the button, and my breathing is good. I felt more wide-open during the magical first days after getting my very first little pigtail catheter, when I could just effortlessly bring in these great flows of oxygen, but I'm not straining for breath at all. It's more that my lungs are more efficient and I can oxygenate fully without taking a full-on, ultra-deep breath. I have been enjoying a nice stream of visits from well-wishers, which feels great: T., newly cast as Daddy's Girl; L., my rock and stalwart; B., who said, "I haven't gotten to kiss you in five days!"; G., who flew in from California and didn't even get see me with my hair combed, apparently scandalizing the nursing assistant (at least that's what I thought the woman thought; she was confusing me); Scary-smart G.K. who preaches at church and whom I have some questions for (none of which I managed to ask or get answered in today's crowds); and LG., who is hooking me up with books. Damn you, friends and family! You are making me feel so lucky even when I'm... sort of not.

But then again... I sort of am.

*

Aug. 23: I spent a lot of time with W., the super medical student, talking New York restaurants. Habits linger, they truly do. The news in SG medical world is that my posterior chest tube has stopped bubbling and will be removed tomorrow. (The procedure: Morphine + groaning, football-player-like exhale combined with brisk yank. Reduce drama by adding the phrase "remove suture" somewhere around morphine if it is relevant.) The leaky anterior tube will stick around for a day or so on water seal (to get an idea of how it will behave at home). Eventually it will get a one-way drain, probably a much discussed Heimlich, and I will go home. I'm sure there will be some CXR action happening to make sure that the posterior bubble isn't reforming and to make sure the anterior bubble is also behaving nicely. I didn't ask for a revised release date. Wednesday seems plausible, though. Maybe even Tuesday if I'm lucky.

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Aug. 24: One tube is gone. Apparently there are studies on what a patient should do during chest tube removal -- hum, hold breath, release breath, etc. -- and none of it matters all that much, so we opted for me to hold my breath and the silence worked fine. A quick tug followed by a steady pull, a weird internal slither as the tube jerked and spun its way up, and it was gone. I think I'll be in less pain generally and find it easier to get comfortable for sleep, so that's positive. I'm now more confused about what was going on medically, however. I'm not sure that either tube ever "sealed" based on what I'm hearing now, but I was sure that one had based what I was told before. Who knows? Something is bubbling maniacally down there at the moment. If I understand correctly, removing the tube will allow me to start using a Heimlich valve when I go home. The aspirational date for that, I now gather, is Thursday. I'm disappointed but thinking positively.

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Originally published Aug. 20 or so, approximately 6 a.m. Updated as indicated.

'No other'

My goal is to write about palliative care from the perspective of my very limited experience of the phrase. The vein of material isn't exactly rich yet. So far, I haven't gone much beyond accepting more intensive home-nursing services and letting myself articulate palliative care for me personally as a possibly beneficial idea. Going even that far has been hard.

But I'm still upset about the political death panel distortions, and Pauline Chen has a nice column about some of the difficulties and shyness on the physician's side of the conversation, so I thought I would link to that briefly and save my own chaotic views for later. My thought is that here, again, is a place where carelessly applied cancer metaphors can cause so much unnecessary pain. It's easy to think about ending curative treatment of tumors as "giving up" -- but isn't shifting your approach to an illness that isn't getting substantially better more akin to letting go? Or a dozen other phrases that any person or family in the midst of this situation could dream up?

Talking Often, and Calmly, about Dying:

As someone who has written an entire book about the difficulties of caring well for the dying, I find all the fury aimed at halting support of end-of-life care discussions more than a little ironic. Why? Because the truth is that most of us need all the help we can get to start these difficult conversations. The truth is that we never talk or even want to think about talking about dying because we are afraid of dashing our loved one’s or our patient’s hopes. The truth is that we fear — even abhor — these discussions because we believe that by talking about dying we are giving up.

Chen also describes some research findings alluded to here that I still find shocking: Only about one-third of terminally ill patients have discussed end-of-life care with their doctors.

*

This is a narrative that works well with Chen's Web essay. It's tough, but very smart and and informative. My pullquote doesn't really do it justice:

His coolness is his armor. “I do not feel obligated to be sort of eternally involved with the experience of death,” Dr. O’Mahony said. “It’s not healthy to be there all the time.”

But the danger is that “death gets to be banal,” he said.

“Do you know that poem by Dylan Thomas?” Dr. O’Mahony asked with a faint smile. “After the first death, there is no other.”

THE OBLIGATORY DISCLAIMER: Let me reiterate that I'm absolutely not sick like the people in these articles yet, and my doctors agree. I am not using "palliative" as a euphemism for "hospice," "terminal," etc. While I am obviously not a well dude, the fact that I had a decent scan recently and that some things are going pretty well for me at the moment are giving me the strength to look hard at things that scare me.

A touch

My local oncologist, Dr. S, will never be my friend, but I respect her deeply. She's prim and organized, qualities mysterious to me. She laughs at my jokes, which I appreciate. Beyond this, though, she maintains scrupulous personal distance. She's not unfriendly, just aloof.

And yet, when I fell into crisis at the end of June, it was her I was desperate to see.

I throw around a lot of scary, chewy words and ideas here. Cancer has hyped up my emotional expressiveness in ways very good and very bad. But I think this truly was a crisis. I had an almost nonexistent appetite, and eating was a painful chore because my mouth was peppered with little sores and sensitivities. Pounds were sluicing off my too-thin frame. I couldn't sleep at appropriate times. My pain felt uncontrollable.

My breathing, which hadn't been easy for more than a year, had deteriorated slowly but relentlessly. I took the problem for granted even though I was dimly aware that it was neither normal nor acceptable, even for a cancer patient, to be unable to walk from the living room into the kitchen without hunkering down to pant some place along the way.

Some evenings, as pain seemed to drip from the tumor in my hip like poisoned rain and pool in my lower leg and foot, I would just sit and sob as L. tried everything she could think of to help until she, too, was sobbing. My physical problems were formidable, my mental issues insidious. The constant strain either put me into a major situational depression or, more likely, converted a longstanding chronic depression into something fiercer and more debilitating.

I somehow knew I needed Dr. S, and L. somehow got us an appointment almost instantly. As I slumped in a chair and mumbled, Dr. S grasped the essentials and quickly made a sensible and comprehensive plan. The appointment ended with two profundities and a pile of prescriptions. The first profound thing was a referral to the palliative care unit of the Visiting Nurse Association, which I am going to be talking a lot about.

The second was that she touched me. I couldn't recall Dr. S ever doing that outside an exam or handshake.

For some reason, as she talked plainly and kindly about how long and hard my illness had been (thoughts I try not to let into my mind), she felt moved to conclude by reaching out awkwardly and patting my shoulder. I was out of it, but engaged enough to be surprised.

Her hand, I felt at the time, almost burned with portent.

Good or bad I could not say.

*

I'm hoping to write about a half-dozen posts about the experience of starting palliative care while still pursuing a curative option, brivanib. Even though changing focus to palliative efforts is nothing like entering hospice, I found the decision fraught and worth writing about. Posts in the series will be tagged "palliativecare" at the bottom. And need I even say that L. was way smarter about this long before I was?

Hospital report

The latest news from the hospital is that they have scheduled a VATS for me tomorrow at a time to be determined. Since I won't be eating or drinking after midnight in the event that they can somehow squeeze me in as the day's very first case, I'm hoping someone's battery gives them trouble and they get here a scooch late. Otherwise, it could be a very long day.

This will be an actual surgery (albeit laproscopic) with real anesthesia, not that friendly sedative stuff. They will basically work the lung over in a variety of ways, including using talc and what sounds suspiciously like sandpaper to create scarring that will fuse the two layers of pleura that contain the lung together, theoretically making it impossible to collapse. More on that soon. They will remove the two tubes I got this week and insert a big surgical chest tube rather than the little 12 french "pigtails" we've been striking out with this month. Some combination of this work, we hope, will help the lung rise and stop leaking, at which point I will go home.

I don't remember clearly enough to have total confidence, but I'd say my expected stay here after the operation is about four days if all goes well. I've recovered well from this in the past, but it's no fun. It will be more difficult this time because the big, painful new tube is going into an area that is already banged up by the two tubes currently in place and the two-week old one they just removed. I plan to moan, whine and abuse any patient-controlled analgesia they provide. I will also sleep a lot.

That's the news. Here's a little noodling: In a display of good old fashioned surgical arrogance that I've only seen on TV, the doctor here seemed to feel that it would be literally impossible for the lung to collapse after he got through it. Given that I've had a pleurodesis three times and the lung has collapsed partially or mostly after every single one, sometimes disquietingly quickly, I sort of wish we had put down a bet on it. Fortunately, I liked the man and I think he has the chops to back up his confidence, even if he understandably isn't up-to-speed on just how intractable and infiltrative epithelioid sarcoma lung mets are. And, of course, I might of misunderstood what he was trying to say to me.

Let's stipulate I understood him correctly just for fun and think about the first two times I had VATS. (We won't count my first bedside pleurodesis.) I don't know anything about the guy here who did my first VATS other than he specializes in hearts (why don't they tell you that at the time?), but I feel strongly that Dr. Unpronounceable A at Sloan-Kettering was an exceptionally careful and competent physician. Everything from his big, prestigious job to his calm demeanor to his deliberate approach to my case to the incredible expertise, bedside manner and smoothness his chief intern showed when he put in a chest tube at my bedside convinced me. The chest tube I got in the emergency room here at home was like a scene from Saw; the work the young man did in NY was about as traumatic as Miles Davis, plus I got free instructions into how and where to flood the lidocaine for optimum pain control which will no doubt be useful as my career in thoracic surgery progresses. You can trust someone who teaches like that.

My miraculous little boy

LA put together a great day for the kids Saturday despite the difficult circumstance of not knowing when the pulmonologist she desperately wanted to talk with would come in -- 8:30 in the morning? Or 8 at night? (Night.) As she woke this morning, she heard some chinks and giggles and was greeted by a peanut butter sandwich and a glass of milk. ("We don't know how to make coffee," B explained.) They wanted, he explained, to make "your life easier since Daddy is in the hospital."

On one level, I just wanted to cry and cry. You're supposed to get to be a child, not make mom (or dad's) "life easier." But what sensitivity and perception he shows. This is far from the only incident. He truly is a small miracle of gentleness, and I like to think we've had no small part in helping him get to be that way.

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Part what impresses me about this is that it represented a real sacrifice for him. For B., seeing peanut butter, handling peanut butter, SMELLING peanut butter, anything peanut butter is viscerally disgusting. He reacts like he's inhaling deeply from the breath of a javelina.

I also enjoyed how he took the lead in redirecting a compliment, a story familiar to LA/Lee Ann's burgeoning group of Twitter followers:

LA, to the kids: "You guys are sweet."

B: "Our mommy is so sweet!"

T: "...and Daddy is so sweet."

B: "Obviously, we inherited the sweetness gene."

Take that, Craig Venter! Millions (tens of millions?) of dollars spent, and I bet my eight-year-old is closer to deciphering the "sweetness gene" than you.

(Edited Aug. 18 for coherence.)

A sad thing

The matter is basically resolved, so it's silly to post here, but I wanted to say something about the "government death panels" that have been around the news.

First, just how stupid do they think we are? A couple G7's in suits weighing granny's value to society and cutting off or reducing her medical care on that basis. Yeah, right.

What the provision would have done was allow Medicare to pay for end-of-life counseling, including things like the development of advance directives, which help your chosen representatives make choices in accordance to your wishes when you are too sick to make them yourself.

I have been thinking about palliative care a lot -- in part because I have signed up for the home-nursing service's palliative care unit even as I continue chemotherapy -- and advance directives are a key part of that process. I actually did mine quite some time ago, as did L.; in my case it may be time to revise some of my answers, but something is most definitely better than nothing.

It would be great, of course, if everyone were cognizant of the necessity of planning for not being immortal, but since most folks are highly resistant to the simple fact that they too will die one day, a few bucks spent helping folks to make their choices and preferences legally enforceable (hopefully) seems worthwhile. Note that there really isn't anything in the bill for the doctor or social worker here; removing the cost, as I see it, almost exclusively helps the patient, who may feel reluctant to pay to enter a difficult conversation. (The time we spent with a social worker going over the forms was covered without discussion by our cancer center; we paid for legal documents like powers of attorney when we had our lawyer draft our will.)

As I said, though, this is moot: No advance directives in the bill. But I still find myself dispirited by the crude, fear-mongering language used by opponents of the provision, as well as my sense that it was picked as a target purely as a matter of opportunity, not on any rational policy grounds. Even worse, this is an expensive target; expensive (as documented by studies) in terms of end-of-life spending, but, even worse, expensive in terms of human suffering.

It's been a quite while since I did my advance directive, so I may not have much to say about that, but over the next couple weeks, I am going to document MY experiences with opting to use some palliative care services long before they are strictly necessary. Summarizing my responses with some writerly tough love, my feelings are good, bad, intrusive and emotionally charged. Of course, I wouldn't feel right if I didn't expand upon that quite a bit.

On the inside

We went to see the pulmonologist on Friday -- always a mistake! -- and my lungs were even worse than the last time she had seen me two weeks before.

I had some clues beforehand: a slight constriction in my breathing and an increase in fatigue. The advance warning helped me make some preparations for the visits. I washed thoroughly (I'm not supposed to shower at the moment) and gave myself a shampoo in the sink. This will delay my descent into looking bizarre by a day or two. I brought a good book (thanks, Lee!). I even kind of sort of tipped B. by talking to him about how much my doctors are working to help me even when they make choices I don't like, for example keeping me in the hospital. I also skipped lunch, though this was more lack of appetite than premonition. The end result, though, was that we were able to get admitted and get my procedure done (removal of an old tube; insertion of a new one) at a reasonable hour.

Of course, the nurses, billing reps, IV nurses, nursing assistant, residents and the rest of the hospital's manifold "teams" kept me up most of the night; but that's just the way the place works. My room is quiet and, at the moment, I share it with no one.

The plan now? Get a CT scan and form a plan. Everyone's memory is shaky but it seems we've done VATS twice on the right side, but only a bedside pleurodesis on the left. So perhaps a pleurodesis is in order. Troublingly, and unlike every other procedure of this type that I have had, my lung didn't immediately reinflate with air and return to its proper position. I have no idea why. The recent removal of the other tube, or something more sinister?

Wit and wisdom of a naughty girl (part 5 of a 586-part series)

The Naughty Girl is in such an amazing, glorious phase that it seems churlish to keep joking about her naughtiness. (Here's a paraphrase from an e-mail she dictated to me while she was away: "Daddy! I love you so much my head is going to fall off!") However, she retains a certain amount of... let's say, sass. Her pre-school teacher babysat last night and reported the following two vignettes:

1) T. and B. about to have a pillowfight. The equipment is set, the ground rules established, and the bell is about to go off, when T. pauses proceedings to crack and re-crack her knuckles with a sort of exaggerated theatricality and relish you'd expect from a professional wrestling match, not a little girl's bedtime. (If she had a long, waxed mustache, she would have twirled that for good measure.) We didn't even know she knew how to crack her knuckles.

2) It's the last few days of pre-school, and all the rules are relaxed, so two little boys who love to wrestle are given special dispensation to mix it up during a field trip to a nearby farm. T., intrigued by what's going on, sort of strolls up as things are breaking up and says, "I might like to wrestle." One boy, the hockey player, immediately runs away. The other is more game -- sadly, though, my silky-haired, blue-eyed little cherub improvises some sort of deadly hammerlock and has him on the ground in seconds. The match is promptly, and mercifully, called.

Reunited

I had other things to say, but then it seemed easier -- and more eloquent -- to post this image of T., B. and me from yesterday. I'm hoping L. would like to post an image, also.

We're all back together, and it's nice.

Trying (replaces "Damn")

The official scan looked much better than what we were greeted with when the doctor first entered the exam room 30 minutes earlier. At that time, we were told that I would be unable to continue, but we can stay in the trial.

I will keep taking the pills, but I will speak with Dr. BT and the trial radiologist will do a more precise review of how I am doing. I don't think they can or would kick me out of the trial befoer the next scan, but I may choose to stop using brivanib at any time if it gets too hard. Fortunately, I feel strong now; we'll just have to see how long that lasts.

I feel totally wrung out and confused. This is clearly the peril of these "wet reads" (eg, instant review). Sorry to alarm anyone; I will update as I get more information and settle down.
*
Note: This has been rewritten slightly on Aug. 9 to make more sense. A future post will get into my thoughts getting the news we've been dreading -- your cancer has progressed too much for the purposes of this trial, you need to find another approach -- and have them take it back minutes later. I'm still... confused... by the whole thing, but I do think that the decision we came around to was the right one and that brivanib is indeed helping me.

More facts

I just wanted to say that my recovery with this small chest tube and Heimlich valve has been little short of remarkable. I wake up at an appropriate time. I can do a little work. (The long absences here weren't for Hawaiian vacations, I fear.) I can even stand a little straighter without feeling like I'm going to choke or collapse. The site where they poked in still hurts and the pain sometimes radiates well away from the area into my shoulder. I'm watching that and wondering whether it's inherent to having a tube piercing your chest or whether I just need to heal a little more.

There are no miracles, of course. I'm still dealing with pain and a lot of other stuff. But a procedure both L. and I hadn't anticipated -- we blamed my recent decline on the pneumonia, too many pain-killers, depression, the inexorable progression of the disease, etc. -- has done its job for now proving, yet again, how many mysteries lurk inside. I'm hoping so fiercely the tube can hold on.

We go to New York on Thursday, in the car for once, not by Amtrak. Good news, I think: Those trains, much as I love them, have been my Waterloo more than once. I'm looking forward to the trip: I'm anticipating that the wheelchair that almost jolted me out of my skull in Soho will cruise the wider sidewalks and streets of the Upper West Side (here's one for you, Tom: "the upper West") with aplomb. Given the restaurants we are going to, I may have to torture everyone with long food posts... And at the end, making even the scan seem irrelevant at least for now, I will cry fat, joyous tears and embrace B., T. and my Mom and Dad.

Twitter

I bombed at Twitter. My wife, on the other hand, is really good at it. If you'd like to read her posts, visit http://twitter.com/leeanncox. Joining Twitter, which takes only a second, would allow you to "follow" her, which she would appreciate. The dispatches there are often more immediate and more amusing than the ones I post here, thanks to the miracle of the cellular telephone. If you can take a little more laughter, heartbreak, poignancy, anger, reportage and more from our travels through illness, her site is the place. You also get a rough-and-ready second opinion on whether I'm full of crap or not here.

Consider it.

Trials on trial

Gina Kolata published a typically strong story, Lack of Study Volunteers Hobbles Cancer Fight, in yesterday's Times about the difficulty of accruing cancer patients for studies, particularly when those patients have other options. Here's a key part of the piece:

There are more than 6,500 cancer clinical trials seeking adult patients, according to clinicaltrials.gov, a trials registry. But many will be abandoned along the way. More than one trial in five sponsored by the National Cancer Institute failed to enroll a single subject, and only half reached the minimum needed for a meaningful result, Dr. Ramsey and his colleague John Scoggins reported in a recent review in The Oncologist.

Even worse, many that do get under way are pretty much useless, even as they suck up the few patients willing to participate. These trials tend to be small ones, at single medical centers. They may be aimed at polishing a doctor’s résumé or making a center seem at the vanguard of cancer care. But they are designed only to be “exploratory,” meaning that there are too few patients to draw conclusions or that their design is less than rigorous.

“Unfortunately, many patients who are well intentioned are in trials that really don’t advance the field very much,” said Dr. Richard Schilsky, an oncologist at the University of Chicago and immediate past president of the American Society of Clinical Oncology.

*
At one point in the article, Kolata or someone else alludes to the possibility of "even" paying study participants.

My reaction was, How about just covering the damn expenses? Or defraying them a little? Three years of disease, and by far my largest out-of-pocket expense has been the brivanib trial. The drug is free, but the every three week nursing or doctor's visits aren't. And the scans: Those cost my insurance company $7,000 every six weeks and require pre-approval every time. Then I have to travel nearly 300 miles to one of the most expensive cities in the world every three weeks for services that sometimes only last a few minutes (except for the waiting). These trips can cost close to $1,000 ($250, train for two; $400 and change, hotel and tax, two nights; $250 or so, cabs and meals). When I sometimes travelled alone for the shorter nursing visits in more spartan style, I could get off "easy" at $325 ($75 for a shorter train ride plus gas for a longer drive, $200 and change for one night at a hotel, maybe $50 for meals and cabs). Either way, it adds up. And as much fun as we've had in NYC -- our focus has been on pleasure and togetherness, not economizing -- this has been hard on our budget.

If a stipend is impossible, maybe the drug company could spend the cash differently and let me, for example, have the nurses at my local hospital look me over, do a symptoms chart, and draw the blood into the special tubes and Fedex them to the Bristol-Myers Squibb lab.

*

At any rate, I'm in the midst of my second trial, gratefully discharging my duty to science and moaning with complaints only occasionally. I know I'm lucky to have access to this medicine; so many people are less healthy or less fortunate. But my personal gratitude can't mask all the problems with clinical trials.

After all, I'm a really sick guy with a couple of bucks and a belief in the process of science. Of course I'll sign up. Attracting more (or less) fortunate patients is going to require reform. There's no question that the process is an expensive, intrusive pain in the rear, even at a big academic medical center with a standing institutional review board. Unless clinical trials are reformed into something patient friendly, it's going to be hard to ever push that three percent participation number up. The costs are too clear, the rewards too vague.

Different menu

Flying off-topic...

So Ruth Reichl, who edits the magazine Gourmet, wrote a tweet about Julia Child expert Laura Shapiro's take-down of the new film Julie & Julia that L. mentioned to me. I immediately read it, and it has bugged me for days, so I thought I'd say a few things about the two books (which I read last year) and the movie (which isn't out until later this week).

First, the Child book. Written by a Child nephew from her vivid notes, letters and, I believe, some interviews, it paints a magical picture of a woman -- a couple, really -- exploding into life together in France after the war. Alex Prud'homme evokes France in the 1940s in filigreed detail with amazing descriptions, ones rooted in research and direct testimony, yet touched with a novelist's powers of imaginative description. And Julia Child herself is so there: big and lusty and excited, always, to work and learn, learn, learn. Her vivid excitement about life shattered me; I cried several times as I read. As reviews of the movie are already pointing out, books about adult love and discovery written with such passion and frankness are rare. I won't blather on about it more: read the book, just read it.

The narrative of Julia Child's experiences, quips, grueling apprenticeship and eventual success form, in my mind, almost a treatise of how to live. She never stopped working -- the story of the creation of the often-revised baguette chapter of Mastering of the Art of French Cooking is testimony to the long miles her intelligence and sense of debt to her audience travelled. I want to tell little T. and B. to read this book someday as they go forth to seek their pleasure and do their work.

*

Julie Powell is more complicated. At the time she began the blogging project that led to her book, she was a secretary, presumably well-educated and definitely underpaid. Stymied by life, she decides in 2002 to create The Julie/Julia Project, vowing to cook and blog the 536 recipes in Mastering the Art of French Cooking in 365 days in her hopelessly inadequate outer-borough kitchen. She does it, she says, for a "challenge" -- but it's soon clear more is going on. This, too, is a story about a woman trying to invent a different kind of life for herself. The gimmick becomes a quest.

Powell, it seems fair to say, pisses Gourmet reviewer Laura Shapiro off, and not just because her character siphons screen time away from Meryl Streep, whom Shaprio finds a most magnificent Julia. "Meryl Streep’s deep, detailed evocation of Julia in the new Nora Ephron film, Julie & Julia, has the power of the original to win every heart in the crowd," Shapiro writes. "As you might expect, she inhabits Julia beautifully—the size, the voice, the physical mannerisms—but to me it’s even more impressive that she gives an account of Julia’s character very much in tune with Julia’s own sense of herself."

Argh, but that Julie. The foul-mouth, the gimmicks, the cooking short-cuts, the occasionally queasy stomach and aversions, the amateurish food foul-ups. What kind of heir is this to Julia Child? Forget heir. What kind of woman is this to even appear with Child in a film?

I don't exaggerate this personal animus. Here's a little more of it: "There’s no question that Powell had a great idea for a blog. What she didn’t have was anything interesting to say about cooking her way through Mastering. Her writing is hollow, narcissistic, and unforgivably lazy—qualities so foreign to Julia that it’s not at all surprising that she once said she couldn’t abide Powell’s work."

(If you're curious about the link, longtime Child editor Judith Jones and Child read Powell's blog together. Here's Jones on the experience: “Julia said, ‘I don’t think she’s a serious cook.’ ” Jones thinks there was a generational difference between Powell and Child. “Flinging around four-letter words when cooking isn’t attractive, to me or Julia. She didn’t want to endorse it. What came through on the blog was somebody who was doing it almost for the sake of a stunt. She would never really describe the end results, how delicious it was, and what she learned. Julia didn’t like what she called ‘the flimsies.’ She didn’t suffer fools, if you know what I mean.”)

Shapiro, for her part, ends her essay with hyperbole. "The idea of Powell as a contemporary heir to this personal and culinary epic is absurd," she writes, even though I can't imagine anyone, not even the Food Network, nominating Powell as a contemporary Child. The film's juxtapositions, I suspect, are intended to frame Powell as disciple, not inheritor.

"Nothing [emphasis mine: Powell also has "nothing interesting" to say about cooking] in her relation to the kitchen offers the slightest hint that she has learned anything at all from her heroine. In the film, Adams tackles each recipe as if it’s her opponent on a battlefield and the only point of cooking is victory. If the dish comes out well, she glows; if it fails, she throws a tantrum. ... Bring a book and a penlight for the Powell half of this movie."

I can't comment on Amy Adams's performance. But it's worth pointing out that she's an actor performing a script under the careful direction of strong-willed expert. Powell's book is vanishingly involved at this stage; I wouldn't conflate the script with it. And Shapiro's flat "nothings" are strong stuff, even for criticism. I freely grant that Julie & Julia (the book) is badly written for long stretches. Words like "crude" or "crass" sprung to mind even as I read it with increasing voracity. My overworked tear ducts remained sand dry.

Does she say interesting things about cooking? Not the way someone like English chef Fergus Henderson does, who talks about chopping parsley in such a way to "discipline it" a little. The language instantly gives you an image of fluffy stack of chopped parsley, slightly bigger pieces mixed with less rustic ones, the whole pile contrasted with the thoroughly cowed little mound of oxidizing green your mom might have produced way back when. Or Southern chef Edna Lewis, who tests cakes by listening to them for the slow, steady bubbling of a not-quite cooked center. Or just about anything Judy Rodgers writes about food. But cooking isn't just great verbs and rhapsodies of caramelization or the creamy transformation of tiny pats of butter added one by one to smooth, transform and thicken a pan sauce. It's more than leeks that acquire a sublimity that make it seem almost impossible that earlier they were sitting in a colander, astringent and filled with dirt.

Cooking is also a physical reality, a manipulation of materials, and reality is messy, for Julie if not always Julia (despite all her charming ability to steamroll through mistakes). You have silky leeks, yes, but there is also the grocery shopping, often in a fluorescent barn at 6 p.m., the knocking elbows with other shoppers and praying someone thought to give the kids some crackers for a snack. Then there's putting the food on the table. Then removing it and putting it away. And the dishes... those dishes... Powell's skill, inelegant as it is, is to capture the messy side of cooking while aspiring to a more, well, Child-like approach. As she pursues this over the course of the book and year, she gets more interesting, less cramped and less crass. I do believe she learns, grows and finds more refined pleasure, despite limited time and sensibility. (And here's a little secret: If she had an editor like Judith Jones working over her prose and pruning the dead spots, the brilliance of the book might match that of its gimmick.)

Early in her quest, after a half-hearted, sleepwalking rant about high-end food culture, Julie Powell reflects on Julia Child. They are straight from the blog, and early in the whole thing, so the writing is even more horrendous than the book's, but there's a point here:

But Julia Child isn't about that.

Julia Child wants you -- that's right, you, the one living in the tract house in sprawling suburbia with a dead-end secretarial job and nothing but a Stop-n-Shop for miles around -- to master the art of french cooking. (No caps, please.) She wants you to know how to make good pastry, and also how to make those canned green beans taste alright. She wants you to remember that you are human, and as such are entitled to that most basic of human rights, the right to eat well and enjoy life.

I'm halfway there. I won't give up capitalizing "French cooking." But I shall eat well. I shall see the film as soon as I can upon release. And even if the Julie Powell section of the movie is as awful as Laura Shapiro says, I won't miss any of Amy Adams. That just wouldn't help me enjoy life.

Gratitude (4)

When the train was cold and L. and I spent the long ride down shivering and holding each other, KW insisted on sending me back home in her school hoodie. It kept me warm, and let me try on the idea of being a lawyer for a while. (Tight fit.) I have an envelope to mail it back, but I hesitate because it reminds me of her and E. and A.

Gratitude (3)

G. made me laugh so hard in New York -- it was during the Mark Sanford days (cheap but fun) and we couldn't leave it alone. A few days later she wrote me to remind me that she had known me almost half her life, yet when we got together we lived in the present, not the past.

*

And this, also: I think I may have dreamed once of the coq au vin she shared with L. and I.

Grief

Sadness dried my mouth and eating became choking as I sat here thinking black thoughts.

Then the phone rang, an e-mail message came, the phone rang again, and the loneliness, for the moment, shrank back into a dirty corner of my skull and disappeared.

So I made breakfast.

Years ago, I wrote the owner of Murray's Cheese Shop in NYC to ask him why they didn't sell fresh ricotta on the internet. It was a stupid question -- fresh ricotta is this sort of goopy sweet-ish cheese (it actually tastes like -- get this -- milk, just elevated) that only lasts a day or two and can't possibly ship well. The guy answered me immediately anyway.

"b/c nobody knows what to do with it," came the reply.

One thing to do with it is to give a slice of ciabatta (a nice farm bread would be even better) a good toasting, spread it thick with the cheese, then sprinkle with salt, drizzle with good, strong olive oil and throw some chopped lemon zest on top. Since I'm not even back taking brivanib yet after the chest tube, I also showered the whole thing with ground pepper. Rebellion!

It was delicious. Sweet, hot, cool, savory, salty, creamy: medicine for this lump in my throat that won't go away.

Gratitude (2)

My spouse loves me, and I love her, even when it is very, very hard. I want to get stronger because I am lost at home not being able to do some of the small things I once did to make her life easier.

Gratitude (1)

I've lost my gratitude. It happens. Sometimes I don't say thank you to the person I love any more, and I usually thank everyone.

*

When I arrived at my hospital room, the place was crowded with a family. They were loud beyond their numbers. Everyone talked loudly; everyone cursed. Almost everyone wore tank tops. They were pumping blood into the boy unit by unit, hammering it in, two... three... four... five... in the time we spent together. He was about 20, and the idea with the blood, it seemed, was to get him well enough for dialysis. His father was dead. He had used drugs before and his kidneys were failing so they had nothing for his pain. Most of the time, the boy was irrelevant to the rowdy proceedings. But sometimes, the group would ridicule him -- though probably their word for it would be "tease" or "give him shit." A friend, obviously a smoker, paced in and out of the room chewing frantically on a cut-down straw. The boy teased back as best he could, so it was a while before I head him moan in the intervals of quiet, or rage about the mystery sickness he thought might end his life.

*

It's morally monstrous to say, but I thought it more than once: I am grateful that I have a different language to try to make sense of my illness with.

Facts

I went to the doctor Thursday afternoon to check on my pneumonia. When she walked into the room after seeing the chest X-ray, she was very grave. My left lung had collapsed; the supports holding it up had shattered. Whatever intricacies of pressure and flesh that had kept it suspended as a belted whole were gone.

She argued for the operation then, in the afternoon. I pushed for the next morning. We "compromised." I somehow ended up spending the night in the hospital waiting for a morning procedure. Placing the tube went well -- I was mostly asleep -- and the lung rose as high as it could, almost to the top of my chest. Instead of putting my on the big suction machine for days, they tried that for an evening, then attached a small valve that would allow the tube to drain air and fluid.

Recently, I began to staring having these little, halting gasps for air as I lay in my bed. The new tube has stopped that and I am grateful. Later this week we will go to New York, have a CT, and face -- yet again -- whether or not we can continue this trial.

A post for Ed, a person I love

A poem by Michael Dickman (The End of the West), because it feels like winter inside.

Returning to Church

Walking through the snow with her was enough, quiet enough, white

breaking beneath

our boots

White then dirt

White

then concrete

Not a word

I watched the black branches of the oaks gliding above us

like the sadows of koi

Shadows, she was singing

Shadows!

*

I had forgotten

all the promies they make

at church, singing or

not singing--

A new body

A living water

I wanted to be very still and listen to her voice moving out in front of me

There are two houses

The dark and quiet

house of God

and the house of her

voice

*

The light through the stained-glass window was snow

Do you want to be home forever?

It's all right if you do

Kiss me in the pew among strangers who aren't strangers but His

other homeless children

The light through the stained-glass window

was snow, not Grace

not Spirit

Not, lightly

His fingers

*

Everyone's so nice!

And they don't even know me, they don't think they have to, hand

after hand

they take my hand

A prayer of bone

The old, beautiful

Wurlitzer rising

behind us

It underwrite all our blessings, note for note, on its way up into the

rafters

I don't have to explain

Hand after

hand

I don't have to be embarrassed

*

The black branches of the oaks glide agove us like the shadows of koi

Disappearing

beneath leaves

and mud

What does God promise?

It's winter, so

the orange and red bellies of the fish

look like small fires

Soon everything will ice over

There won't be

any room, not

anymore

Care of the body (2)

L.L came over yesterday. (She has no nickname here -- she could be L-Squared, Double L, anything.) She came to cut my hair. I thought she was just going to buzz it off: The stray locks that had lengthened and congealed into strings, the mess of ex-sideburn fuzzing around my ear.

I imagined that as a kind of liberation.

But she took out her old scissors, talked about the meditation of the task, and began, with utmost delicacy, to snip away my hair. It fell away in dry little clots as the blades snipped away. I listened carefully as my hair parachuted down. I was so grateful to be free of it.

Care of the body (1)

When I took my shirt off yesterday, a day after being released from the hospital, my wrist brushed along my ribcage and stopped at an unfamiliar obstacle. An EKG lead was parked there, its little pad glued down and the metal contact in the center. I felt around and found several more.

I was confused for a second, and then remembered that placing the chest tube had gone strangely. My back was convulsing so they sedated me earlier and more than usual. I can only hazily recall George the doctor moving me in and out of the machine and marking the spot for his needle. I don't recall the EKG at all.

For a day, I thought nothing of those abandoned leads.

You get used to so much.

Then I thought of them rolling me away insensate and bruised with a new tube and suction box moored to my fragile, sunken chest. I thought of them having someone hurry me upstairs as they wiped down for the next client, not even taking the care to remove the trash they had left glued to me.

Echoes

A stray thought from my recent hospital stay: The echoing, untraceable screams of the lost old man at night remind me of the howling of the coyotes in the fields behind our home. When the yelping wakes L. and I, we always embrace and wonder about the whereabouts of the cat.

Sarcoma in the Key of E

Woke up late last Tuesday

Had a hospital to get to

Made a plan, started the van -- then

I found out I had more wakin' up to do.

The road was twisty and turvy,

my mind was filled with fuzz,

I missed a turn, my tires started to burn

then a CRASH! and the van met the trees.

The following day, L. drives us to NYC,

I get weaker and weaker on the way,

we see the doc, hit the hotel to rest

and my fever rises up past 103.

Over urgent care we merrily go;

it's a place that's easy to enter

but awful hard to get let go.

Five shots to the hand and they draw

my blood (it looks the same as before).

The chest X-ray reveals a minor horror;

not collapsed lungs, I laugh at those,

but a pneumonia -- and no fool laughs at those.

We're "admitted" they say, but there is no bed,

so my fabric cubicle will have to do.

I curl up and collapse for what seems an hour,

then am interrupted by doctors 1,2,3 and fo'.

Fo' is great--a major break--a man I know so well,

he waves his hand, writes a script and back to the hotel I go.

Things are normal for a while,

then gets to be time to leave,

we take a cab to get our car,

all is great, all is well

'cept our luggage is gone, possibly halfway to hell.

L. calls the taxi commission,

she visits the cops,

but it's Sunday -- and no one stops.

We find a crappy place to spend the night

then finally good news, all right!

The valets at hotel 1 made a mistake

(perhaps our bag gave them a head fake?)

and left our suitcase on the sidewalk.

Now the bag is back and we are ready to

sleep the night. I have high hopes for the mornin' --

and not a little fright.

****

Lessons learned:

1) I can sustain this medium (barely) for a verse. It's just as well that I forgot about the chorus, believe me.

2) Or wait, maybe it's not a bad blues song! Maybe it's a bad poem, hence no chorus! (The fact that it could be both or neither confirms that it is bad if nothing else.)

2) I am exhausted and it has been a horrible and dispiriting week. I'll try to talk about this in a real way soon. For now, I hope it will suffice that the pneumonia is very small and the fever hasn't recurred since we started treatment.

No more Vicodin?

A federal advisory panel voted Tuesday to recommend a ban on Vicodin and Percocet. Both painkillers contain acetaminophen, a drug that when taken in very large doses or with alcohol can damage the liver. I was initially shocked by the news -- Vicodin helped me a lot early on with my pain -- but as I thought about it more, it made more sense. After all, one can just take the narcotics in either drug (oxycodone in percocet, hydrocodone in vicodin) on their own, adding or not adding doses of acetaminophen as your doctor advises. At any rate, the announcement is a good reminder of how dangerous Tylenol can be, especially if you still drink a little.

The NYT coverage is here.

Update

L., my wife and the world's number one supportive pessimist, reviewed my (just typed "our" by mistake) most recent radiology report, and the verdict is in: The news, indeed, was good.

This may sound silly -- the doctor already told us the news was reasonably good -- but it's continually amazing to me how different the report is on paper from what you hear from your doctor. It's not just Dr. BT; he's blunter than most. My oncologist at home, Dr. S, also spins these things within an inch of their lives. And "good" differs quite a bit from "stable" or "not disastrous" or "can stay in the trial, at least." I don't want to exaggerate and say that the tumors are shrinking all around, but there's some reason to hope that maybe next time we'll get a stronger result and actually roll some things back in a significant way. Which would be almost unprecedented -- my cancer hasn't responded really strongly to anything except gem/tax followed by gemzar plus radiation, and that was years ago. So let's hope.

I'm focusing on that because it's getting more difficult to hang with the treatments. I've always thought that brivanib was surprisingly benign, but it's starting to show some teeth. To wit, my mouth is sensitive and painful. I thought there might be some ulcerations in there, but fortunately, there aren't. But I simply can't eat many, many things. Also, my stomach has started acting up. I haven't had nausea, but I have had a lot of issues, including plain old loss of appetite. I suppose that it's not surprising that I'm having more stuff come up, since I've now been on the drug for something like 17 weeks, albeit with a six-week placebo hiatus in the middle.

The other thing, since I'm in a complaining, er, describing mode, is that I'm having increasing difficulty swallowing those four enormous pills every night. I'm pretty sure that the problem is psychological, but it's no less real for that. While I once bolted them down three at a time, I now carefully consider each one, picking it up, putting it down, easing it into my mouth, taking a huge gulp of water -- and almost every time I feel close to gagging. So I wait for a while, then start the whole lugubrious process over again. The whole process takes freakin' forever.

'Writer's Block'

Michael Ruhlman on writer's block:

When I put up a recent tweet saying writer's block was nothing more than an attempt to justify your own laziness (and not recognizing this was simply lying to yourself), I got a number of angry RT's calling me (at best) smug. To those whom I angered I would say, that's a common response when someone takes away a crutch.

If there is a problem with Twitter though, it’s an inability to express nuance (for most of us, anyway, who don’t have the poet’s genius for condensation).

But here I can say, re: writer’s block: This I Believe:

The phrase writer’s block is an excuse that should be used only by the weak and delusional (or as lighthearted slang for “It’s cocktail time somewhere!”). If you must put a tag on your inability to produce, be my guest. We all know what it means.

Oh-oh.
*
(I've actually always refused to use that term, not that my production is much the better for it.)

Sweet stability

After an overairconditioned train ride that featured a close-range, cringe-worthy incident between an odd woman and the conductor (Odd Woman, who is trying to strike up a conversation: "My mama was black... [after questioning] well, my governess was." Conductor, in a friendly tone: "Most people don't call their nanny 'Mama.'"), we finally got to the city, crashed and ate dinner. Then the scan, more unpleasant tests, and The Wait.

By about 3:15 in a doctor's appointment scheduled to start at 12:45, and a day that started at 8, we were told that the radiologist thought the tumors looked very slightly worse, the doctor thought they looked very slightly better, and collective verdict was stability for the purposes of the brivanib trial. So delighted to have another six weeks to let this thing work. One of the pneumos is a little better, the other is a little worse. So it wasn't howlingly great news, but I'm very pleased with it all the same. My pulse is back in the double-digits, anyway.

Now it's time for relaxation, friends, a nice dinner and some good sleep.

I Wish I Was Him

Andrew Sullivan on taking testosterone in 2000:

It has a slightly golden hue, suspended in an oily substance and injected in a needle about half as thick as a telephone wire. I have never been able to jab it suddenly in my hip muscle, as the doctor told me to. Instead, after swabbing a small patch of my rump down with rubbing alcohol, I push the needle in slowly until all three inches of it are submerged. Then I squeeze the liquid in carefully, as the muscle often spasms to absorb it. My skin sticks a little to the syringe as I pull it out, and then an odd mix of oil and blackish blood usually trickles down my hip.

Sick Guy on taking testosterone in 2009:

I pull the largish square envelope from its package, then tear it at its score lines and slip out the flesh-colored disc and set it on my desk. I brace myself as I feel around underneath my clothes for yesterday's patch, then rip it (and sometimes a considerable amount of body hair) away. I take the new disc, puffy in the center with its cargo of synthetic testosterone, and remove its plastic backing. A strong smell of alcohol fills the air as I stick it to my stomach, shoulder or thigh.

The immediate effect for Sullivan:

Because the testosterone is injected every two weeks, and it quickly leaves the bloodstream, I can actually feel its power on almost a daily basis. Within hours, and at most a day, I feel a deep surge of energy. It is less edgy than a double espresso, but just as powerful. My attention span shortens. In the two or three days after my shot, I find it harder to concentrate on writing and feel the need to exercise more. My wit is quicker, my mind faster, but my judgment is more impulsive. It is not unlike the kind of rush I get before talking in front of a large audience, or going on a first date, or getting on an airplane, but it suffuses me in a less abrupt and more consistent way. In a word, I feel braced. For what? It scarcely seems to matter.

For Sick Guy:

I feel nothing, and proceed to knock down the other seven or eight pills I take every evening.

Sullivan:

[At the point I started the injections] I weighed around 165 pounds. I now weigh 185 pounds. My collar size went from a 15 to a 17 1/2 in a few months; my chest went from 40 to 44. My appetite in every sense of that word expanded beyond measure. Going from napping two hours a day, I now rarely sleep in the daytime and have enough energy for daily workouts and a hefty work schedule. I can squat more than 400 pounds. Depression, once a regular feature of my life, is now a distant memory. I feel better able to recover from life's curveballs, more persistent, more alive. These are the long-term effects. They are almost as striking as the short-term ones.

SG:

Three weeks in, and my weight is stuck stubbornly, tragically, at less than 130 pounds. I once wore XL clothes; now I take smalls. I still nap. I do not work out, not unless Wii Tennis counts. My appetite is fragile -- up, then down. Some days I eat almost nothing, forcing down a couple high-protein drinks and a piece of toast. Other days, like a memorable one a while back, I feel different.

I was reading to little B. about castles and swords and dreams of knighthood, when a primal surge of hunger rose up in me and demanded food. I ate a handful of grapes and a sack of pretzels and emerged only hungrier. I rose shakily to my feet and procured two "whip it's!" (a marshmallow-focused confection that is the pride of Quebec) mainly because the cookie sack was already on the counter. Then a square (OK, two) of rum-caramel-filled chocolate. At this point, L. said something along the lines of, "Jeez, dinner is almost on the table." I subsided briefly, but grabbed another handful of grapes. I then proceeded to eat a Close Encounters-like pile of mashed potatoes and some grilled flank steak and spinach.

*

Sullivan’s NYT essay on testosterone -- which ranges far beyond the personal anecdotes I recount here -- is worth reading, despite the powerful critiques hurled against it, most memorably by Judith Shulevitz. For Sullivan, at that time, the hormone held huge explanatory power backing up a particular idea of competitive, vigorous masculinity, an idea that, if taken crudely, is not so far from the ass-kicking, NASCAR lovin’ sort of guy-dom I satirized here. Another note: It’s striking to compare the effects of Sullivan’s sudden and presumably higher-dose method of delivery to those of my more gradual approach. Perhaps this change in modality, which I assume is widespread, accounts to the fact that people (except, maybe, Floyd Landis) aren’t talking about T. as a wonder hormone any more. I’m still hopeful that it will stimulate appetite and build muscle, but it’s clear that it’s going to take a while.

Will it make me into a better man -- or at least a more manly man?

I don’t think so.

*

Note on the title: I don’t wish I were him, Andrew Sullivan. It’s a reference to this song by Ben Lee, which is a tribute to Evan Dando. Lee, who looks like he’s about 11 in the video, actually did get as cool as Dando, dating Clare Danes for several years before marrying Ione Skye. Dando, sadly, is apparently still mired in addiction and has almost destroyed his talent and voice.

Quick hits

Some things that caught my eye recently:

The pristine white coat, that pressed symbol of a physician's authority? May spread MRSA and other nasty bugs. Ties could be bad news, also. Somewhere, my man Dr. Bow Tie is smiling.

Don't read this if you don't want to cry: A little girl dreams of seeing the Pixar movie Up years before its release, but she's too sick to go to the theatre when it finally comes out. The family calls Pixar to ask if they will grant her dying wish, and they quickly fly in a representative with a bag of toys from the movie, a poster and a DVD. I'm dead serious about the crying, by the way. This one hit me hard.

No link here, and I'm seven years late to the party (had to let the critical opinions coalesce, you know), but I have become obsessed with The Wire. A half-baked thought on the show's acting: People always say it's wonderful and I agree, but I've been asking myself why is the acting so wonderful. One factor, I think, is the character's voices; so many of them are deep and resonant, churning with rumbles and gravel, ready for late-night radio. The chorus makes a wonderful sound as it speaks words that ring true. And the guy playing the lead detective went to freakin' Eton for godsakes and had to spend a few weeks learning a plausible accent for a Baltimore detec. I love that.

The iPhone 3GS is very cool. Don't ask me how I know this; I just know. Happy Father's Day indeed.

Rumors of my...

I was going to make the Mark "Rumors of my demise have been greatly exaggerated" Twain joke here, but I mostly decided against it since I myself am responsible for any rumors or concerns about my health.

A while back, I posted "long silences on cancer blogs are bad business," and I'm sorry to have worked that way myself. I'm fine -- well, fine-ish -- and the radio silence was the result of a lot of things... low-grade depression, the end of second grade (for my son, not me), my ongoing breathing troubles, a nice visit from my in-laws, feeling like I didn't have much new to say, etc.

I forgot that a lot of people read this who aren't in direct contact with me, and I'm sorry for any worries that my absence may have caused. If anything serious ever happens, L. has access to the blog's passwords and I'm sure she will post updates as warranted.

Thanks, everybody, for the notes and good wishes. I'm feeling a little better and much more motivated to start telling stories again. I'll even have news -- my next brivanib CT is on Thursday, so we're gearing up for the tough trip down to NYC on Wednesday. I'm trying to use my new... not sure what to call it... visual mantra?... to keep my anxiety in check. I'll say a little bit more about that soon.

The times, they are a-changin'

Back from NYC, and there are going to be some changes around here. I'm going to drop the poetry, adopt a new prose style (see below for a sample), add a few matters of consideration to discussion (professional wrestling), and move the food coverage from occasional discussion of cupcakes and recipes more toward canned beer.

Why, you ask?

Because I have been given a prescription for a patch loaded with pure testosterone, baby! Nobody likes the fact that I dropped 10 pounds in the three weeks between NYC visits, especially since I've spent the last week desperately trying to eat more and drink Ensure. This effort started after I got on the scale, weighed in at 129 pounds (I'm a tad over 6 feet tall), and felt a surge of pre-rational terror that I was starving. So the hormone will hopefully reverse that by stimulating appetite and muscle growth.

Much more on the visit -- and the T -- soon. Enjoy the weekend, everybody.

*

New blogging style, at least until they get the dose right. Punchy, verb-oriented: "Me SG. Me hate cancer. Smash! What on TV?"

Me

... and everything has been getting harder.

I spent most of Memorial Day Weekend in bed, save for a very diverting visit from some friends and their Bernese mountain dog. Another friend came to visit, and I just couldn't drag myself out of bed to see her, redoubling how crappy I felt.

So what's wrong? My agonizing back pain has faded to the background. But my shortness of breath hit a tipping point sometime in mid-May; it's gotten to the point where I can get breathless walking from one room to another. I feel like the fatigue has lessened slightly, though I don't know if my wife would agree with me. I'm still falling asleep at the wrong time and waking up the wrong time -- I'm keeping the hours of a club kid, and yet I rarely stray far from the couch. For a while I had no energy for the computer, no blogging, no e-mail, no Twitter, nothing; so maybe this is a small, good sign.

In terms of substance, we're heading to New York tomorrow but I don't expect to find out much. It's a brivanib nursing visit, but I think we will see the doctor and get his thoughts on the breathing problem (I'm hoping it's at least partially a side effect) and all the other issues. In terms of goofiness, I've gotten a little ritualistic about my pills again. Back in the chemo-by-vein days, I'd recite a little mantra to myself as the medicine began to flow; when I began oral chemo, I tried to imagine little armies forming to just, I don't know, pop the malignant cells. But anything can become routine, and for a long time, I just swallowed. Lately, though, I've been trying to imagine opening that dull, white brivanib bottle as uncorking that proverbial can of whupass. It's nice to think so, anyway.

What's up with me

My collapsed lungs pulled me into my pulmonologist's office yesterday. It was about time, the shortness of breath was getting ridiculous.

The bad news was that my lungs "look exactly like someone with emphysema." The good news was that they tested me and I don't need supplemental oxygen.

As you might imagine, it wasn't a fun visit.

I suppose the more meaningful good news is that they aren't going to do any procedure right away to try to reinflate either of the lungs. (My right lung is procedured-out, anyway.) I can muddle along, watching myself carefully, as they huddle up to develop a plan and we schedule something after I've gotten to have some time back on brivanib. The likeliest thing that will happen is that I will have surgery that, essentially, leave a small permanent chest tube with a little valve that can be used to drain out any air collapsing the lung. I doubt this will allow me to resume flying, but it will give everyone peace of mind as I live my life.

The best news is that I have started taking a nerve blocker, neurontin, that has done wonders for my pain. We reduced the size of my fentanyl patch from 100 mcg/hour to 75, I've cut way back on the dilaudid I take for breakthroughs, and I am more comfortable than I have been in weeks. Yay! It's hard to be much of anything to anybody when you are in a lot of pain. The downside, of course, is that the neurontin has left me fatigued in a new way, but there's a good chance that will get better with time. I can also see reducing the fentanyl patch another notch in the near future.

I also had a thought as I left the doctor's office: Could the brivanib be causing some of my shortness of breath? I need to look at the side-effects sheet, but I think that's something that can happen. I may be crazy, but I feel significantly more breathless than I did in NY, even though my lungs look basically the same. Although it wouldn't make a difference in terms of managing it (I can't comfortably walk across the damn house at this point), it would be nice to know that the side effect part of it, at least, was temporary.

I'm also hoping to put something delicious on the smoker this weekend.

***

For other folks with epithelioid sarcoma, on my scans this started first with harmless little speckles (not obviously malignant nodules), that kind of grow a little and pop. (The move is from periods to O's.) This can blow through the lining of the lung and cause a collapse. Also, much of my disease, apparently, is on the outside of the lung, kind of drilling inside. E-mail me if you're seeing this as an early issue; even our highly experienced NY doctor didn't recognize this as a disease process when it was beginning back in 2008.

Sweetness

A few days ago, T. and I were getting ready for bed and she surprised me by triumphantly presenting Charlie and the Chocolate Factory as her next book. She had watched the movie with a babysitter, and now she was hungry for more.

I was thrilled, and not just because she previously favored a schlocky series of books about fairies produced by a conglomerate under the penname "Daisy Meadows." Charlie was an important book for me, one of the first I read and loved by myself, and I couldn't wait to see how she would react to Charlie's basic decency, the loathsome habits of the book's other children and, of course, the wonders of Willy Wonka's factory.

So far, it's gone as well as I hoped. She's rapt. After the first couple chapters, she regaled co-reader L. and myself with a rundown of what had happened so far. "The boy loves chocolate... and, and, and he only gets it once a year, so when he birthday come, he puts the bar in a box! And looks at it! And, and, and then he pulls wrapper and takes a small, tiny bite..."

Last night, we were reading -- watch out, a spoiler is ahead -- the part where the golden tickets are loose in the world and Charlie is about to get his annual birthday bar. T., who had been squirmy, stills and presses her round little body against mine. Her blue eyes are bright and avid. She is sure Charlie is going to get the ticket right then and there, and she gets progressively more excited as the book builds up toward the moment when the boy pulls the wrapper off his Wonka's Whipplescrumptious Fudgemallow Delight.

I almost feel bad for her -- but at the same time, her entire being is vividly conveying the thrill and discovery of reading, one of my highest aspirations for her. A few years ago, there were a lot of reasons to think that I wouldn't know T. at five. Now there are a lot of reasons to think I won't know T. at 10 or 15. I certainly won't see how her story comes out.

But as I read a great book with a budding great reader, it's clear that, sometimes, the end isn't as important as how you get there. The stuff in between is exciting, too. Charlie rips off the wrapper, revealing only chocolate, and T. is immediately and vocally appalled. "Daddy!" she shouts, as if I were personally responsible for throwing yet another disappointment in poor Charlie's path. T. is furious, but I am secretly and silently delighted. The story continues. Sweetness lies ahead.