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The wit and wisdom of a naughty girl (part 1 of a 586-part series)

2008-11-18T10:18:00.002-05:00

Some things my daughter has said recently:

A Jacuzzi. [In response to a question about what she’d like for Christmas.]
A swimming pool then! [In response to the suggestion that a Jacuzzi might be too large for Santa’s sleigh.]
It’s not tight! I just need to stretch it out a little!
You know what I’m not paying attention to? YOU!

By the way, I don't mean "naughty" pejoratively. Though she drives us crazy at times -- dealing with her willful behavior and tantrums can be exhausting -- her spirit is amazing and will, I think, serve her well in life.

Checking in

2008-11-17T13:59:00.002-05:00

Nothing much to report, but I wanted to check everyone in on the trial and how I'm feeling.

It's a little ridiculous, but I've been reticent about talking about my symptoms because of the possibility that I'm receiving a placebo instead of actual medicine. I'd hate to chronicle every daily up and down here and then yank the rug out at some future point. I've also learned not to trust many of my reactions to my own body -- every sensation can seem like a symptom, and my baseline level of wellness isn't terrific. This makes it very difficult for me to say what's going on.

That said, I'm starting to feel like I may be getting the drug. The first three-to-four weeks of the trial were quiet; I felt nothing, basically. Then, almost two weeks ago, a tiny little bump popped up in my mouth, quickly followed by a few more. They didn't ulcerate as miserably as mouth sores usually do, but I was encouraged anyway. I also started to feel even more tired and to have some difficulties with my stomach (nausea, lack of appetite, etc.). The big test will come Nov. 26, when I have my first set of bimonthly scans for this trial.

By the way, Elsa is describing her experiences with the brivanib trial at Sloan-Kettering at her fine blog, Living With A Sarcoma. I'm following this closely, because it is an option that I may pursue at some point.

The cancer genome

2008-11-06T12:25:00.003-05:00

Although there are no immediate implications for cancer treatment, I highly recommend this New York Times article on a groundbreaking new study. The scientists essentially created a personal genome for a person with cancer, then compared the DNA in cancer cells with the DNA in healthy cells to lock in on the mutations associated with the disease. The work is fascinating.

Some of the patient’s mutated genes appeared to promote cancer growth. One probably made the cancer drug-resistant by enabling the tumor cells to pump chemotherapy drugs right out of the cell before they could do their work. The other mutated genes seemed to be tumor suppressors, the body’s natural defense against dangerous genetic mistakes.

“Their job is surveillance,” Dr. Wilson said. “If cells start to do something out of control, these genes are there to shut it down. When we find three or four suppressors inactivated, it’s almost like tumor has systematically started to knock out that surveillance mechanism. That makes it tougher to kill. It gets a little freaky. This is unscientific, but we say, gee, it looks like the tumor has a mind of its own, it knows what genes it has to take out to be successful. It’s amazing.”

Writing lessons from Barack Obama

2008-11-05T13:57:00.006-05:00

I was struck last night, and again today, by the quality of Barack Obama's brief speech at Grant Park. I was impressed by its disciplined eloquence and found some lessons for my own writing within its construction.

1) Get right into it. Political speeches (and articles and blog posts and bad short stories and...) often start with ritualistic throat-clearings thank-you's to the Jefferson County Rotarians. Not Obama's. He greeted the crowd, then launched in:

If there is anyone out there who still doubts that America is a place where all things are possible; who still wonders if the dream of our founders is alive in our time; who still questions the power of our democracy, tonight is your answer.

2) Make it new. We all know that Obama's election was "historic." The TV commentators reminded us every half second. But what does that mean? Obama took an abstraction vitiated by overuse and made it real by telling the story of Ann Nixon Cooper, a 106-year-old woman whose adoptive mother was a slave. This, granted, is the same impulse that gave us Joe the Plumber and every grating "real person" at a state of the union speech, but look what Obama does with it:

This election had many firsts and many stories that will be told for generations. But one that's on my mind tonight is about a woman who cast her ballot in Atlanta. She's a lot like the millions of others who stood in line to make their voice heard in this election except for one thing -- Ann Nixon Cooper is 106 years old.

She was born just a generation past slavery; a time when there were no cars on the road or planes in the sky; when someone like her couldn't vote for two reasons - because she was a woman and because of the color of her skin.

3) Complete the circle(s). The climax of the speech is set up by Ann Nixon Cooper. Obama uses her life to frame the last century of American history and to recapitulate one of his campaign slogans. Returning so strongly to the "Yes we can" of the primaries rhetorically completes the transition from candidate to president. But Obama is working a variation of his theme, not repeating it. Last night, "Yes we can" was less a rallying cry than a promise. The shift suited the moment: exhilaration intermingled with the sobering knowledge of the work ahead.

And tonight, I think about all that she's seen throughout her century in America -- the heartache and the hope; the struggle and the progress; the times we were told that we can't, and the people who pressed on with that American creed: Yes we can.

At a time when women's voices were silenced and their hopes dismissed, she lived to see them stand up and speak out and reach for the ballot. Yes we can.

When there was despair in the dust bowl and depression across the land, she saw a nation conquer fear itself with a New Deal, new jobs and a new sense of common purpose. Yes we can.

When the bombs fell on our harbor and tyranny threatened the world, she was there to witness a generation rise to greatness and a democracy was saved. Yes we can.

She was there for the buses in Montgomery, the hoses in Birmingham, a bridge in Selma, and a preacher from Atlanta who told a people that "We Shall Overcome." Yes we can.

A man touched down on the moon, a wall came down in Berlin, a world was connected by our own science and imagination. And this year, in this election, she touched her finger to a screen, and cast her vote, because after 106 years in America, through the best of times and the darkest of hours, she knows how America can change. Yes we can.

Most of us would have been satisfied to close with this new, rounder version of one of our earliest political rallying cries, in the same way that lots of journalists end a story by recapping or extending the story's beginning in some way. But Obama has another move in him, one that works rhetorically and substantively. He turns from Cooper and our past to his daughters and the future:

America, we have come so far. We have seen so much. But there is so much more to do. So tonight, let us ask ourselves -- if our children should live to see the next century; if my daughters should be so lucky to live as long as Ann Nixon Cooper, what change will they see? What progress will we have made?

This is our chance to answer that call. This is our moment. This is our time...

Of pens and patients

2008-10-31T10:17:00.003-04:00

Harold J. Wilson would make fun of my banality, but I'm continually amazed by how impersonal medicine is. And it's not like I'm expecting a B&B with chintz and ricotta pancakes. Josh (get well and get that sunscreen, buddy) offers a good rundown of the procedure experience here:

Another waiting room.
Another long wait.
Another day fasting.
Another nurse with another medical history survey and a list of the same questions as I lay on a pre-op bed.
Another chance to teach a medical intern our history.
Another poke with a needle for another blood draw and IV.
Another time saying goodbye to Kim before going into another cold operating room.
Another set of vitals appearing on a monitor then shifting from one bed to the operating table, more faceless people behind surgical masks and doctors I don’t meet.
...

The patient's experience immediately before a procedure is an odd combination of being the center of attention and yet feeling almost completely irrelevant. (Is this how John McCain feels when he appears at a rally with Sarah Palin?) There are folks milling around chatting with each other and setting up the equipment, but usually only one of them is, at any given time, actually paying attention to you. As Josh points out, you sometimes find out who some of these people are only when you get the explanation of benefits from the insurance company. Weird stuff. Even weirder: Before one little ditty at Sloan-Kettering, my doctor was holed up in a corner feverishly checking his e-mail until about a millisecond before the anesthesiologist knocked me out.

For some reason, thinking about the ways that medicine can feel crude and inhuman made me think of pens -- specifically, ball point pens and Sharpies. It's often good practice for a doctor to write on a patient's body -- "amputate here," "x marks the spot," whatever -- and to do so, they typically use a regular pen. I would have thought there would be some special super-duper medical marking pen (and, in fact, there are), but the only thing anyone has ever written on me with was a Sharpie.

Except once.

When I was getting a lymph node biopsy, the guy doing the procedure (an inexperienced specialist your hospital gives gravitas to with the title "fellow") was having a lot of trouble finding the nodes with his ultrasound, so the big dog doc ambled in to set him straight. When he homed in, he reached into his pocket and pulled out a ball-point pen to mark their location and the needle insertion angle at one of the tenderest points of my inner thighs. Two observations: 1) A ball point pen doesn't write very well on flesh. Takes a lot of pressure; 2) The distinguishing feature of such a pen, as denoted by its name, is point. As little T. would say, "Owwie."

I thought of this after reading this story investigating the possibility of germ transmission by hospital Sharpie pens. It turns out that they do not hold bacteria while the fancy, medical-specific pens do (both are supposed to be discarded after one use anyway). Score one for crudity, I guess. Maybe even score two: One sad aspect of the biopsy story just occurred to me. Even though I resented the oblivious scratchings of the ball-point-toting big doc, after 45 or more stressful minutes on the table while the young dude futzed around, I was pathetically grateful for his decisiveness.

Morning, noon, night

2008-10-29T14:53:00.003-04:00

Morbid brother that I am, this TNR book review caught my eye.

'To philosophize is to learn to die": seven words, and an epoch in Western thought. According to Plato in the Phaedo, one of the inextinguishable monuments that he erected to his martyred teacher, Socrates believed that philosophy was a way of "practicing dying." Cicero, who set himself the task of making philosophy speak Latin, translated "practice" not with meditatio but commentatio--meaning "careful preparation," from which we get our own "commentary" or "study." Study, he implies, takes us outside ourselves, beyond our bodily needs, and thus helps us to transcend our physical finitude.

Yet there is also, in Cicero's momentous linguistic decision, the implication that what one studies, as well as that one studies, prepares us while alive to meet our eventual fate. Philosophy can teach endurance, forbearance, and perspective amid both joy and catastrophe. Those who live in fear of death also live in fear of pain, in fear of danger, in fear of the new; but those who accept the reality of death are freed from all these fetters.

I can't comment on the substance and conclusions of the piece -- I'm only about a third of the way in, though I'm enjoying it so far -- but I did want to say something about a comment appended to it that I've been chuckling about for the last hour or so. In the finest Internet tradition, a Smart Guy Explains It All To Us:

Does not Professor Miller [author of the review] understand the basic truth that living and dying are part of each other? The banality of his conclusion amazes me. To live well must include dying; to die well includes the appropriate conclusion to a meaningful life. What is mysterious about that?

Thank you, Harold J. Wilson, sage of the age. Now, this piece may well ultimately come to a banal conclusion -- and Wilson's comment, clearly, is more right than wrong in its substance. But sweet Jesus, what that "basic truth" of the unity of death and life elides. At risk of making another banal conclusion, let me quote the old saw that there's knowing, and there's knowing. How to make leap between the two -- with faith, with reason, with any means available to you -- now that's a freakin' mystery.

I'm with Reagan

2008-10-28T09:56:00.002-04:00

It's frivolous, but I can't resist linking to this first-person piece about mixing politics with medicine. Although I've occasionally enjoyed joking with nurses about things like the Fox News howling in the background in the hellish radiology waiting room, I'd just as soon not know how most of these folks feel about the issues of the day (except, possibly, in terms of health care).

An excerpt:

Remember when Ronald Reagan was shot in 1981? He quipped to the doctor who was going to operate on him, "I hope you're a Republican." The doctor replied, "Today, Mr. President, we're all Republicans." That would have been less convincing from someone wearing a Carter-Mondale pin.

Reading

2008-10-21T10:03:00.002-04:00

There isn't a lot of actionable information, but the Los Angeles Times Health Section is currently offering a large package of cancer-related articles. Two that were particularly interesting to me were For Cancer Patients, Personalized Treatment Offers A New Range Of Options -- and Hope and The Quest for Cancer-Preventing Drugs.

What's going on?

2008-10-21T09:40:00.002-04:00

Perhaps a side effect of deforolimus (or placebo) is some sort of inhibitory effect on blogging?

Sorry for the radio silence here, but shortly after starting the trial I got hellaciously sick. At first I hoped the fevers were something akin to the mysterious fevers that struck me 48-72 hours after receiving Gemzar, but it turns out they were probably just an infection. Anyway, I seem to have finally shaken it off, so I'll try to start posting more frequently here.

I haven't noticed anything that feels like a new side effect of the drug, alas. I'll see the doctor and have more bloodwork done in about a week, which might offer a clue as to what's going on. I'm also right in the midst of the expected wheelhouse for developing the mouth sores. If I find any, I'll surely post -- because what more fascinating topic of conversation is there than mouth sores?

Viva Placebo!

2008-10-21T09:29:00.004-04:00

via Ezra Klein, I thought these charts on the efficacy of placebo treatments for three diverse disorders were interesting....

In search of side effects

2008-10-09T19:16:00.002-04:00

I'm currently in the odd position of ardently hoping for chemo-related side-effects.

I want to know whether I'm taking deforolimus or the placebo, and the way I'm going to find out (*) is by monitoring my blood work and symptoms closely. But through some weird sort of medical certainty principle (Schrödoctor's?), obsessively monitoring one's body for symptoms... ensures that you'll experience symptoms. In the kind of sterling move that probably would have been smart before I started this trial, I searched for deforolimus side effects and found this article from a patient advocacy organization recounting a presentation by Camille Bedosian, Ariad's chief medical officer. This was a year or so ago, but the non-legally-vetted talk is more illuminating than Ariad's official publications.

Some excerpts:

Why would someone who has had a favorable response to chemo want to take deforolimus?

People who have gotten remission are unlikely to stay on chemo, but they may want to take deforolimus in hopes of staving off a recurrence. Also, it is common for people on chemo to take a break from time to time to let their body recover a bit. Those who have had shrinkage or stability may want to take deforolimus while on a break from chemo. Others may have reached their limit of a certain kind of chemo or be waiting to figure out what to do next.

...
Even so, why test the drug against a placebo?

"How are we going to know if it works?" Dr. Bedrosian said. Dr. Sant Chawla of Los Angeles added, "Someone has to prove this to the nonbelievers. Otherwise, we’ll be talking about this for 10 years."

If people get new tumors or their existing tumors grow, they have to leave the trial. Those who were on the placebo can't get the drug, Dr. Bedrosian said, because that would affect the trial results. People who complete the trial will be told whether they got the drug or the placebo. If they got the placebo, they will not be allowed to get the drug.

If people get side effects, won't they know they are getting the drug, not the placebo? For example, she said, about 70 percent of the people who took deforolimus before have gotten mouth sores.

But some of these sores were minor – similar to what people get in the general population, she said. People who have had chemo recently may have a hard time distinguishing chemo side effects from the side effects of deforolimus.

Bedosian also mentioned that they felt like deforolimus worked best against faster-growing sarcomas and that about one-third of heavily pre-treated patients in phase II trials had a positive response to the drug. I summarized some information about the study design and side effects here.

According to my doctor, the mouth sores (a 70 percent side effect, according to Bedosian) can often be resolved by temporarily altering the dosing scheme; they won't necessarily last the entire course of treatment.

And so here I find myself, searching for mouth sores, and wondering if the stomach ache I had last night is related to my flu shot, the pepperoni pizza I ate, the chemotherapy, or the anxiety of living with still more uncertainty.

---

* Ariad is willing to "break the code" if necessary once you leave the study and tell you whether you received the drug or the placebo. I would like to know sooner, however.

And so it begins

2008-10-08T09:24:00.002-04:00

The weirdness struck me an hour or so into the appointment, when I was told, "We've called Ariad. They are randomizing you right now." I considered praying, but it felt false. I hoped instead. A number was generated, and the hospital staff pulled the appropriate package from the pharmacy. One contained medicine, the other sugar. We wrestled the tiny pills out of their foil, I took four, and we waited an hour while I was kept under observation. Then it was home. I sat on the sofa, exhausted and a bit bewildered by what had just occurred.

37!

2008-10-01T12:35:00.002-04:00

The sad truth is that I probably would have felt bad about turning 37 a few years ago. It would have sounded old to me; a nose too close to 40. I would have felt bad about the books I haven't written, the careers I haven't pursued, the wide recognition I haven't gotten.

Now, of course, 37 seems heartbreakingly young, and my birthday is, once again, a source of joy rather than melancholy. I spent both 35 and 36 in the hospital -- with last year's jaunt to the ICU being particularly horrible -- so I was so grateful to have cake at home with my family. It was a quiet night, but 40 -- 40's gonna be a party. Save the date.

God and whiskey

2008-10-01T12:33:00.002-04:00

I pretty much hated this piece, but I have to admit that the lede got my attention:

I looked death in the face. All right, I didn't. I glimpsed him in a crowd. I've been diagnosed with cancer, of a very treatable kind. I'm told I have a 95% chance of survival. Come to think of it -- as a drinking, smoking, saturated-fat hound -- my chance of survival has been improved by cancer

The son

2008-09-25T09:31:00.004-04:00

One of the second-grade girls got a little frisky with B. yesterday, kissing and hugging him to his professed consternation.

It brought back memories of the time in kindergarten when Big Tina chased me down like a lion pursuing a sick wildebeest, planting a couple of smackers on my cheeks while I secretly wished that little Tina, the redhead, had done the chasing and the kissing.

We discussed ways to dissuade this behavior. B.'s first instinct was that his fists might be helpful, but I pushed for a softer-line solution. "She's your friend, B.," I said, "and she's hugging you because she likes you. You don't want to hurt or scare one of your friends. It's OK to say that you don't want her to touch you, but if you freak out she'll just want to do it more."

He considered this, and replied. "The school regulations" -- love that word choice, "regulations" -- "say that kissing is never OK, and that hugging is only OK if the person asks first. I didn't ask first!"

Later, at soccer practice, the little girl chanted "B.'s here! B.'s here!" when we showed up and, in fact, snuck in a little kiss in line. B. didn't look too upset.

On the way home, we talked about the cancer a little bit.

"Dad, I'm sort of glad that you're sick because we get to spend more time together. I mean, I'm not glad, but..." We went on from there, him breaking my heart with every word. On the one hand, he loves computer games and war books and thinks it might be a good idea to whack a cute little girl for hugging him. On the other, his empathy and sympathy for other people is widening and deepening almost every month. It's such a pleasure to watch his moral acuity grow.

He then told me that he hoped that I could just stay the same, so that we could stay together with the family. But then he paused, and reconsidered. "But I don't want you to hurt too much." I'm not hurting too much, I told him. I also want me to just stay the same if I can't get better. It occurred to me later that I could have said something about the deforolimus -- that I was, in fact, going to try to start taking a drug that was intended to help me "stay the same." But the placebo muddies those waters, and I'm always cautious -- perhaps overcautious -- about offering false hope.

I approve this message

2008-09-24T10:47:00.002-04:00

Got a call for Dr. S last night -- Ariad's doctors agree, my scans are stable enough to enroll in the deforolimus trial. She also mentioned that she had been e-mailing with my NY doctor, and he was also on-board with the decision to take a shot at the trial. So I'm going to go for it sometime next week after I finish a course of antibiotics I'm taking.

I'll have much, much, much more about the drug and trial in upcoming weeks. Probably not so much the substance of it, but the psychology. In the meantime, here's an abstract (emphasis added) of an encouraging deforolimus sarcoma trial published in January:

Phase I trial of the novel mammalian target of rapamycin inhibitor deforolimus (AP23573; MK-8669) administered intravenously daily for 5 days every 2 weeks to patients with advanced malignancies.

Mita MM, Mita AC, Chu QS, Rowinsky EK, Fetterly GJ, Goldston M, Patnaik A, Mathews L, Ricart AD, Mays T, Knowles H, Rivera VM, Kreisberg J, Bedrosian CL, Tolcher AW.
Cancer Therapy and Research Center, Institute for Drug Development, The University of Texas Health Science Center, San Antonio, TX, USA.
PURPOSE: This phase I trial was conducted to determine the safety, tolerability, pharmacokinetics, and pharmacodynamics of deforolimus (previously known as AP23573; MK-8669), a nonprodrug rapamycin analog, in patients with advanced solid malignancies.

PATIENTS AND METHODS: Patients were treated using an accelerated titration design with sequential escalating flat doses of deforolimus administered as a 30-minute intravenous infusion once daily for 5 consecutive days every 2 weeks (QDx5) in a 28-day cycle. Safety, pharmacokinetic, pharmacodynamic, and tumor response assessments were performed.

RESULTS: Thirty-two patients received at least one dose of deforolimus (3 to 28 mg/d). Three dose-limiting toxicity events of grade 3 mouth sores were reported. The maximum-tolerated dose (MTD) was 18.75 mg/d. Common treatment-related adverse events included reversible mouth sores and rash. Whole-blood clearance increased with dose. Pharmacodynamic analyses demonstrated mammalian target of rapamycin inhibition at all dose levels. Four patients (one each with non-small-cell lung cancer, mixed müllerian tumor [carcinosarcoma], renal cell carcinoma, and Ewing sarcoma) experienced confirmed partial responses, and three additional patients had minor tumor regressions.

CONCLUSION: The MTD of this phase I trial using an accelerated titration design was determined to be 18.75 mg/d. Deforolimus was well tolerated and showed encouraging antitumor activity across a broad range of malignancies when administered intravenously on the QDx5 schedule. On the basis of these overall results, a dose of 12.5 mg/d is being evaluated in phase II trials.

Patient power

2008-09-23T13:24:00.002-04:00

I've been thinking a lot about clinical trials lately, as you'd imagine, and one of the things I've been wondering what percentage of drugs at a given stage of trial eventually make it to market.

I tend to think about it in sports terms -- that for every 20,000 high school basketball players, maybe 10 will play in division 1, and for every 100 D1 players, maybe five or ten make the league. But this is obviously vague, plus it leads to inappropriate analogies: Is this upcoming cancer drug a seven-foot-gazelle, or a 5' 11" point guard who shoots too much? So I was interested to see this passage in a Forbes article about the perils and possibilities of patient-directed medical research:

The patient groups are filling a void in drug research created by the industry's legitimate fear of failure. Biotech executives dread what they call "the valley of death," the period of time between a drug's conception in a lab and its first clinical trial. For every 10,000 would-be medicines chemists create, only one makes it to market. But if a drug has already been through enough tests in cell cultures and lab animals to justify starting clinical trials, the odds of success have risen to one in nine. Put the substance through early clinical trials with a few dozen patients, and the odds jump to one in six. At some point a drug for even the most uncommon disease becomes every bit as appealing to drug companies as an untested potential heart treatment or impotence pill.

I'm not sure I completely believe this -- one in nine drugs in phase-1 trials eventually make it to market? -- but it's encouraging. The rest of the article is interesting as well, and even features a quote from sarcoma celebrity and all-around oncological badass Dr. George Demetri. It's clear that there are highly-motivated and talented individuals (many with business expertise) who can make good things happen faster than they would otherwise, especially for rare conditions that may not have the "market share" to immediately attract pharma dollars. But the emotions involved are intense. Forbes describes prostate-cancer advocates running amok against doctors skeptical about the evidence backing an investigational drug. I get both the advocacy side -- just try to keep me away from something that may work -- and also why some kinds of advocacy absolutely are not helpful to researchers trying to practice good science and good medicine and minimize unintended consequences.

Sarcoma, incidentally, has at least one collaborative group pushing to link researchers at different institutions and secure funding for trials. Though the Sarcoma Alliance for Research through Collaboration was founded by academic researchers, there's at least one seat for a patient-advocacy organization on its board, and they sponsor an array of collaborations, studies and trials.

Banned

2008-09-23T10:06:00.002-04:00

The Berkeley Bowl is the greatest supermarket on earth. It's where I learned that cheddar doesn't have to be bright orange and that you could purchase random spiny little chunks of fish to make a delicious broth, steps in a 20-year-plus journey of becoming ever-more engaged by food and cooking. But it's a weird place, as the Los Angeles Times explains:

The produce emporium -- one of the nation's most renowned retailers of exotic fruits and vegetables -- creates its own bad behavior. Kamikaze shoppers crash down crowded aisles without eye contact or apology for fender-benders. So many customers weren't waiting to pay before digging in that management imposed the ultimate deterrent: Those caught sampling without buying will be banned for life -- no reprieves, no excuses. (Not even "I forgot to take my medication.")

Raphael Breines, who was ejected last year for eating on the premises, said he couldn't decide between two types of apricots, so he sampled both. Security stopped him in the parking lot.

"They treated me like a thief," said the 37-year-old park planner, who was photographed and required to sign a no-trespass agreement. "Technically I was stealing, but I wasn't trying to hide anything. I was just deciding which type of apricot to buy."

Breines, a longtime customer, sent an apology letter, asking to be reinstated. His request was denied.

The really great part of this -- and why I go off-topic to link to the piece -- is the fate of John Glionna, the reporter. He has been, you guessed it, banned from the Berkeley Bowl for life.

'Heal me, my darling'

2008-09-23T09:28:00.004-04:00

Just because: Ben Harper, covering "Sexual Healing." (Also solo.)

And to make your day: Stevie Wonder doing "Superstition" live on Sesame Street in 1973. (The little kid dancing at the top of the stairs is my hero.)

And hey, to make my day: My little tune-fest this morning (which I've spared you most of), made me think of my rinse-cycled iPod so, with some trepidation, I plugged it in.

It worked!

It will be interesting to see if it holds up -- often, exposure to water leads to corrosion that destroys electronics over time -- but things are looking good for the moment. I didn't do anything much for it except leave alone for a few days and run it briefly through the dryer.

Update: Unsurprisingly but disappointingly, it didn't hold up.

Next time, bring up the weather

2008-09-23T09:00:00.002-04:00

Doctors fall short in comforting cancer patients:

Researchers taped 20 exchanges between cancer patients and their oncologists and surgeons at a VA hospital. They found that the docs did provide a bit of empathy, but ignored most instances where patients expressed worry about treatment, sickness and death.

Because, you know, why would a patient want reassurance about treatment, sickness or death?

¡Viva México!

2008-09-18T11:02:00.002-04:00

Here's a happy thing from my life: Tuesday was Mexican Independence Day, when our neighbors to the south threw off the shackles of the Latin American rogue state Spain (or so John McCain would call it -- sorry, sorry, couldn't resist). Señor E., L. and myself celebrated with chiles en nogada; poblanos stuffed with picadillo, then topped with a creamy walnut sauce studded with bits of pomegranate. The pepper, sauce and pomegranate deliciously form the red, green and white of the Mexican flag. Although I was feeling quite sick for most that day, I Tylenoled up and felt well enough to gorge myself on the chiles, saffron rice and brownies topped with cajeta, an ultra-rich goat's milk caramel.

Embracing uncertainty

2008-09-18T08:32:00.005-04:00

I had a scan yesterday, and the news was good -- mostly. (It would be really nice to have unambiguously positive results from a study, but it's just not in the cards.) My lymph nodes are all the same size, there are no new mets, my disease is technically stable. The pictures and a whole lot of my blood is now being shipped to Ariad, where they will review the information and determine if I am eligible to participate in the deforolimus study. If I get the OK, I'll probably start on the drug or placebo in late September or early October, just after my birthday.

So why don't I feel exultant? Well, I've been wiped out with another mysterious fever for the last couple of days, and in the interlude yesterday between the scan and the doctor's visit, I managed to put my iPod through the wash. (It looks great, but no longer works.) Also, the collapsed lung that had completely healed last month is back in a big way, and it may require intervention at some point. Fortunately, my nightmarish pleurodesis is still somewhat in effect, adhering the lung to the pleura at a couple points, so hopefully the lung won't completely fall down and require immediate action. The scan also revealed several small, hollow cysts on the surface of the lung, which my doctor and the pulmonologist she consulted believe are the source of my collapsed lungs. What's the source of the cysts? We don't know, but some sort of respiratory infection is a possibility. The tiny nodule they found in my last study, incidentally, occupies a piece of real estate that once contained one of these cysts, so they are now more confident that the nodule is not a malignancy.

As I'm reading this, it's sounding pretty good, so let me try to explain why I'm so anxious. Part of the anxiety is just a learned response; I've gotten a lot of bad news over the last two years. Part of it is the fear of any cancer patient that something is lurking invisibly deep within the body, biding its time, lurking and waiting to rear up and do harm. Part of it is that I know of several epithelioid sarcoma patients who are dealing with pneumothoraces, some with visible lung mets, some without. (Have you had your lungs collapse four or five times in six months? No? Then you can see why I'm not convinced this has nothing to do with the cancer.)

It comes down to the uncertainty, I guess. One of my mantras throughout this illness has been that we need to learn how to embrace uncertainty, or at least live with it, because the only certainties we're going to get are going to be bad. That's true, but it's a hard way to live. I'm trying, though.

David Foster Wallace

2008-09-15T21:52:00.003-04:00

I found out that David Foster Wallace killed himself last night, and the news made me sick. My relatively brief and shallow acquaintance with his writing changed permanently how I see John McCain, right-wing talk radio, the nervous system of a lobster, professional tennis, television commercials, cruise ships, irony, grammar and literary fads. (I wonder what the hell might happen if I ever read his fiction seriously.) Years ago, driving the car, I chanced upon an interview that Wallace did with Michael Silverblatt, and I had to pull over. His erudition, passion and richly timbered voice captivated me. Here's a little bit of Wallace from another interview:

I had a teacher I liked who used to say good fiction’s job was to comfort the disturbed and disturb the comfortable. I guess a big part of serious fiction’s purpose is to give the reader, who like all of us is sort of marooned in her own skull, to give her imaginative access to other selves. Since an ineluctable part of being a human self is suffering, part of what we humans come to art for is an experience of suffering, necessarily a vicarious experience, more like a sort of “generalization” of suffering. Does this make sense? We all suffer alone in the real world; true empathy’s impossible. But if a piece of fiction can allow us imaginatively to identify with a character’s pain, we might then also more easily conceive of others identifying with our own. This is nourishing, redemptive; we become less alone inside. It might just be that simple.

I was also moved by his commencement address at Kenyon College (I'm a fan of the genre), some of which I'll quote below:

And I submit that this is what the real, no bullshit value of your liberal arts education is supposed to be about: how to keep from going through your comfortable, prosperous, respectable adult life dead, unconscious, a slave to your head and to your natural default setting of being uniquely, completely, imperially alone day in and day out. ...

If I weren't so tired and depressed by the whole thing, I'd go on and on. Maybe I will later. In the meantime, you can find links to some of Wallace's journalism here.

'Survivors' by Errol Morris

2008-09-10T10:26:00.001-04:00

Worth watching:

Donne and death

2008-09-09T11:21:00.001-04:00

A nurse unexpectedly loses a patient:

What can one do? Go home, love your children, try not to bicker, eat well, walk in the rain, feel the sun on your face and laugh loud and often, as much as possible, and especially at yourself. Because the only antidote to death is not poetry, or drama, or miracle drugs, or a roomful of technical expertise and good intentions. The antidote to death is life.