Thursday, April 30, 2009

Fentanyl tip

Theresa Brown, an oncology nurse, writes a nice column in the Web edition of The New York Times. I read it because she's a sensitive writer and thinker and because I like to get a glimpse of what is happening on the "other side" -- but this week I noticed a possibly useful medical tip for people, like me, who use pain patches.

Brown suggests giving a patient spiking intermittent fevers a fentanyl patch, and a doctor immediately shoots down the idea:
The doctor was referring to the fact that heat can interfere with the patch’s slow-release mechanism, causing it to “dump” a large dose of fentanyl all at once. Some patients wearing the patches have died, and some of those deaths were likely caused by a patient applying a heating pad, or because a patient had a fever.
I knew heating pads were a no-go with fentanyl (and, being under the age of 90, I don't tend to use them), but fever had never occurred to me. So it may be worth a call to nurse or pharmacist if you wear a patch and get hit with a heavy fever. You probably have enough tolerance to the narcotic to avoid actual danger -- but you might end up woozier than you'd like if the drug releases faster than normal because of the heat.

Wednesday, April 29, 2009

Seeking popularity

It's funny, when I started writing this thing I honestly didn't care if anyone ever read it. It was for my wife first, me second, and maybe the kids down the road. I went the anonymous route and I told no one what I was doing. Part of that wasn't shyness -- I just didn't want to get hooked onto an albatross if I didn't enjoy blogging. I was also worried that I might not have much to say and that I would burn through my cancer-related thoughts in a week or two. (Sadly, no.)

A year or more down the line, this is still largely a personal exercise. L. has told many of our friends about the blog, and many of them have started reading it regularly, which is hugely meaningful and flattering to me. Google and a few links from other sites have also attracted people with similar interests and concerns. On a good week, a few hundred different people drop by and check the place out, and I like to imagine that some of them find it convivial and take away something useful to them.

That said, I'd like to attract more readers. I'd also like to entice more commenters -- which is really difficult, since I suspect maybe 1 out of every 50 regular readers becomes a regular commenter. To that end, I have removed pretty much all barriers to commenting. You can write anonymously and you no longer need to deal with re-entering the stupid "captcha" words which, to me at least, never resemble the script of any language I know. We may see a bunch of Nigerian-scam-type stuff here for a while as I work out the consequences of opening things up, but I hope we'll also see a little more conversation. Depending on how things go, I may start restricting comments to select posts as an attempt to husband a pretty limited resource. (Or does that go against the blog spirit? I know nothing!) For those who do not wish to comment publicly, even anonymously, there is an e-mail me link on the right side.

I'm also hoping to find ways to get linked to around the web a little more, possibly by engaging more with other, better-established blogs. I've been meaning to do this for a while anyway, just for the pleasure of it. I very recently began reading The Assertive Cancer Patient and while the author there is as different from me as can be -- she is a 10-year breast cancer survivor, makes beautiful jewelry, lives on the opposite side of the country, has a ton of moxie -- learning a little bit about her strength and struggles has been inspiring.

Tuesday, April 28, 2009

How to hail a cab

When you take an eight-year-old boy to New York City, you learn many things. You learn there is an aircraft carrier in the Chelsea. You learn that it is possible to sleep perpendicular on a king-sized bed. You learn much about dinosaur teeth and Teddy Roosevelt.

You also get a refresher in your cab-hailing technique. Here's how the B.-Man does it:

1) Learn that a cab is necessary; begin excitedly jumping around and buzzing in circles around your father.
2) As your father turns to look at something boring and useless like a street sign or address, make your move. With a mighty leap, pull his hat off his head (don't worry too much about the knee you accidentally lodged in his kidney).
3) Hat in hand, begin running madly toward the nearest street. Ignore the direction of prevailing traffic, obstacles such as construction debris and anything else that might halt your progress.
4) Immediately jump into street, protesting only mildly when aforementioned father, now lathered with panic, pulls you back onto the sidewalk and says that we need to cross first.
5) Once set in an approved position, begin manically hopping around waving the hat. Do not look for cabs before you do this. Start a series of actions resembling calisthenics, only more bizarre and disjointed, shouting "Taxi! Taxi!" all the while.
6) Pause for some tips. "Look to see if there are any cabs before you start hailing them, buddy. Also check for the light on top to see if they are on or off-duty."
7) Resume step 5, disregarding information gleaned in step 6. Ignore tapping of father's foot and curmudgeonly 37-year-old grumbling.
8) Proudly show your dad into the cab you hailed all by yourself. Return hat.

Monday, April 27, 2009

Getting smarter about end of life

The Skeptical Hypochondriac links to what sounds like an interesting Terry Gross interview with Dr. Robert Martensen, a doctor, medical ethicist and expert on end of life care.

I found this interview snippet on the blog interesting, and plan to listen to the radio show as soon as I can:
Many of the medical tools we currently use during end of life care were not created for that purpose. For example, a ventilator is a great way to help someone bridge from sickness to health. Does the same tool (which is extremely uncomfortable and requires additional drugs) make sense to extend one’s life for a few days or weeks? Should we sustain life at all cost?

Friday, April 24, 2009

How I (almost) became Superman

This week's big piece in The New Yorker is headlined "Brain Gain" and carries the subhead "The underground world of 'neuroenhancing' drugs." Glancing through it reminds me of an incident early in my cancer career. More on that soon, after a little context.

The piece sets up underground neuroenhancement roughly as follows:
Adderall, a stimulant composed of mixed amphetamine salts, is commonly prescribed for children and adults who have been given a diagnosis of attention-deficit hyperactivity disorder. But in recent years Adderall and Ritalin, another stimulant, have been adopted as cognitive enhancers: drugs that high-functioning, overcommitted people take to become higher-functioning and more overcommitted.
You've probably seen a headline or two along these lines ("Valedictorian admits to prescription drug abuse") or seen a reference or three in movies. The use and abuse of drugs like Ritalin and Adderall among people without ADHD has generated more frequent news stories over the past few years. Less well known, though, is that some psychiatrists use the drugs to treat cancer-related fatigue and other problems. My former psychiatrist, a gnomish man with heavy-framed glasses and a taste for fine dining, is one of them.

Was I tired? Well, yes.
Did I have any drug or alcohol problems? No.
Blood pressure OK? Sure.

After a battery of questions lasting a few minutes, I left the office with a script for dextroamphetamine (an agent highly similar to the active ingredient in Adderall, with very little practical resemblance to methamphetamine) and a paean to the drug ringing in his ears. His patients loved it. Almost all of them said it helped them. They felt sharper, more energetic. Getting through the day was much easier. Addiction wasn't a problem -- you just tapered off. Likewise, as you developed a tolerance, you took more drug to achieve similar effects.

Before I took the drug, I looked it up. That's when I started to get really excited, or as excited as I could get in those woozy, muffled, cotton-candy days of chemotherapy-by-vein.

I read, and as I did, I imagined myself happier, livelier, more social, better in conversation, sharper, smarter, more focused; I imagined myself becoming a sort of a Me 2.0, a bug-checked improved iteration supercharged by some harmless little pills. Before I filled the prescription, I began referring to the drug fondly as "dex," as the gnomish psychiatrist did. I found paragraphs on the Internet elaborating on my future cognitive greatness and social prowess and read them to L., jokingly hinting that she might have to step it up. I was mostly playing it for laughs, of course, but the idea of being smarter and more focused held almost elemental attraction for me, an attraction more compelling even than solving the immediate problem of loosening the crushing weight of fatigue that made routine daily tasks seem almost impossible.

Needless to say, I filled the prescription posthaste, and here the story gets anticlimactic. I took my pills faithfully at the low initial dose the doctor suggested and felt nothing. As he recommended, I titrated the dosage upward slightly. For a while, still nothing. Then my heart rate began steadily increasing. A new sort of shrillness entered my mind and body, an unpleasant sense of acceleration that felt like a cousin to panic. The shrillness made me feel edgy, the edginess made me more conscious of my ever-rising heartbeat, and soon I felt like I had a huge, resonant bongo thumping away under my ribs.

Genius, however, remained elusive. I was still distractible. I was still tired (though now I struggled to sleep over the din of my new side effects). I received no reports of being more amusing or incisive. So I quit.

The funny thing is, though, is that every time I read or see a story like The New Yorker's, the idea of short-cutting myself to a better brain and more accomplishments still appeals to me, even though my experience with cognitive enhancement was miserable. So, yeah. As the piece says somewhere, it looks like "cosmetic neurology is here to stay."

My doctor is a genius; yours sucks

Thanks to the WSJ Health Blog, a pointer to a survey showing how Americans feel about their physicians. Turns out it's pretty similar to how they feel about Congress -- they hate the aggregate, like their individual representative.

The Journal boils the findings down this way:

Asked whether it was a “major problem,” “minor problem” or “not a problem” with the U.S. health-care system that too many patients were getting tests and treatments they don’t really need, 49% of respondents chose “major problem” and another 39% called it a “minor problem.”

At the same time, 82% of respondents said that they hadn’t received an unnecessary medical test or treatment over the past two years. And 87% said their doctor during that time hadn’t recommended an expensive test or treatment when a cheaper alternative would work just as well.

I'll come out and say it. I've had unnecessary tests: lots of them. Some soreness around the ankles and a few minutes in bed led to an ultrasound. Layers upon layers of CTs and MRIs. Exotic blood tests and more. Don't get me wrong -- I don't feel like my doctors have been profligate. Dr. S is actually pretty conservative, rejecting the hastily proposed idea of a brain scan, for example, when long-acting morphine starting giving me headaches and making me throw up.

Interestingly, the biggest tester of all my doctors, a glorious radiation oncologist who will still, two years after treatment, seek us out in the halls of the hospital and call as at home to ask if we need any help, is probably the physician that I love and admire the most. It's not because of the tests, but perhaps the aspects of a doctor's temperament that make him or her more likely to be more aggressive about testing are related to the parts of a physician's personality that are good at making a patient feel well-looked-after and cared for. Which is what we all want, really.


The WSJ blog post has a lot of added information and context that I didn't bring in here, so it's worth reading if this topic interests you.

Bagging the beast

Phyllis Kutt had good genes -- only a couple of cancers in her family. She ate right -- vegetarian, in fact. She exercised, she didn't smoke, she saw the doctor, she didn't correspond to any known risk group. She still ended up with metastatic breast cancer.

When I saw a Gina Kolata cancer article today, "Pledged to Find Cancer Cure, but Advances Prove Elusive," I expected a useful corrective; that is, a piece that would describe the complexities of curing cancer, the lack of actual progress made in preventing and treating disease, the structural problems with the research complex and more. There's that, but also a lot more, much of it buried in the story of Phyllis Kutt, which is toward the end of the piece. In a few hundred words, the world's best newspaper introduces you to what this disease is, in the person of a highly intelligent and sympathetic heroine with some bad luck.

Kutt's thoughts, economically but powerfully portrayed, range from the shock of diagnosis, the difficulty of initial treatment, the pain of recurrence. Now she's in treatment for life:

“I am still on that and will be forever until the cancer progresses and I change to other drugs or some new drugs are developed, or I die,” she said.

The hardest part is explaining to friends and family.

“People will say to me, ‘So when is your treatment going to be over?’ ” Ms. Kutt said. “That’s the perception. You get treated. You’re done. You’re cured.”

“I think some of my family members still believe that,” she added. “Even though I told them, they forget. I get cards from my nieces, ‘How are you doing? You’ll be done soon, right?’ ”

From here, the article moves back and unlocks the context for some of this false hope: the technical language used in the testing-and-review process for new drugs. I've touched on this here and there, but Kolata does so in an efficient way:

One reason for the misunderstanding, he said, is the words that cancer researchers and drug companies often use. “Sometimes by accident, sometimes deliberately, sometimes with the best intentions, sometimes not, we may paint a picture that is overly rosy,” he said.

For example, a study may state that a treatment offers a “significant survival advantage” or a “highly significant survival advantage.” Too often, Dr. Saltz says, the word “significant” is mistaken to mean “substantial,” and “improved survival” is often interpreted as “cure.”

Yet in this context, “significant” means “statistically significant,” a technical way of saying there is a difference between two groups of patients that is unlikely to have occurred by chance. But the difference could mean simply surviving for a few more weeks or days.

Then there is “progression-free survival,” which doctors, researchers and companies use to mean the amount of time from the start of treatment until the tumor starts growing again. It does not mean that a patient lives longer, only that the cancer is controlled longer, perhaps for weeks or, at best, months. A better term would be “progression-free interval,” Dr. Saltz said. “You don’t need the word ‘survival’ in there.”

I don't know if I'd dive into this piece when there's sunny gardening time to be spent, but I learned from in it and even (thanks to Ms. Kutt) found a little inspiration.

Thursday, April 23, 2009

Back again

Little B. and I just returned from New York for an intermediary brivanib appointment. Despite the hundreds of miles and dollars expended, there was little medical content involved. They grabbed some blood, asked some questions, I turned in a diary, I saw a doctor, the doctor's minions gave me a prescription and scheduled a new set of appointments. That short sentence, by the way, contains about five hours of lived experience.

All that for a placebo.

The nice part was taking B. Early on, when I was frantically spinning the number of trips this trial was going to involve and the effect they would have on the family, I promised B. that I would take him along on one. I soon started feeling worse -- more exhaustion, more pain -- and skipped a plausible opportunity or two to take him. But I finally managed to do it this time. We met up with a beloved pre-school teacher/friend of the family and went to the natural history museum. B. and I hit a couple of our favorite restaurants, The Shake Shack and Frankie's. I sprung for the extortionate admissions fee to see the Intrepid, a World War II aircraft carrier turned giant aviation museum. We made some memories and, once again, proved there is room for joy in the midst of this horrible disease.

Monday, April 20, 2009

At the end of the wire

A resonant "Modern Love" essay:

TYRONE and I never watched TV together — at least we didn’t until last fall, when his lymphoma came back. We knew then what we were in for, months of waiting for the injections of Campath to knock down the cancer, and fear that it wouldn’t. We knew there would be many homebound evenings, so I put all five seasons of “The Wire” on my online DVD list.

Thursday, April 16, 2009

Category: Sex

I'm only making things worse, and perhaps I've made a howler of a mistake in missing a common-to-others innuendo about the phrase "Card Blue" (along the lines of the whole "teabaggers" fiasco), but I learned why this blog is banned at our local hospital's wireless network, and presumably on Memorial Hospital's as well.

It is a sex blog.

If this is true, it must be the most boring, nonexplicit and depressing sex blog in planetary history. But what can I do? A computer program called "Websense" has officially dubbed me too hot to trot.

"Whisper it in my ear, baby.... epithelioid sarcoma."

Someone to look up to

When L. and I were in the hospital, we watched the documentary Man on Wire instantly on Netflix. (A perfect choice for man on chest tube.) I loved it, and I was pleased to read that star Phillipe Petit is now saying “he will perform a high-wire walk this fall in Midtown Manhattan. The New York Times writes, “It will be high, it will be long, and it will be outdoors in a very recognizable location that he does not want revealed quite yet — arrangements are not final.”

After reading that, I couldn't resist chasing down a couple of other Petit articles, including one about Petit's long-time, somewhat eccentric interest in post-and-beam barn-building, and was delighted to find some interesting thoughts there on uselessness from Debra Winger:

Ms. Winger allowed as how Mr. Petit had been “a sort of muse” since long before she met him. “The metaphor of a life on the wire,” she began, “the idea of being too busy to be afraid, these are the things that spoke to me.”

“If Philippe would wear a swoosh on his T-shirt, he could walk the [Grand] canyon yesterday,” she said. “If he would do a reality show. But he’s a purist, and that’s tied up in the reason he’s up on the wire. But we need this ‘uselessness.’ I find that the things that are useless in life free us in a way that nothing else can. ...”

Perhaps she overstates his "uselessness," however. Petit, who is an artist in residence at Cathedral Church of St. John Divine in New York, is the only person there with the guts to change the lightbulbs in the building's towering chandeliers.

As for me, after all this self-flagellation about "bearings," I think I am going to turn to beautiful uselessness.

Wednesday, April 15, 2009


$86,975.66*. That is how one hospital stay throws a family into bankruptcy. That is how losing a job or trying to game the COBRA system for a month can ruin someone financially.


That is my bill for 15 days at Memorial Hospital. I felt fine three days before admission.

Thanks to my insurance, my share of this bill will be $250.

I've seen a lot of big medical bills, but I never get used to them.


* I'm not certain, but I believe that that this figure leaves off some very expensive charges from physicians and anesthesiologists. In that case, my 15 day stay could easily top $100,000.

Tuesday, April 14, 2009


When I first got out of the hospital, my dad was here, and I was focused on him and the kids and being back home, and I didn't think about much else. A couple days passed, he left, and my friend E. arrived and I shifted my attention toward him. In the weeks that followed, I would periodically get an almost panicky sense that I was lost and drifting. I need to find my bearings, I'd find myself thinking in the middle of the night. I'd get up mid-afternoon to refill my water, then pirouette toward the bathroom: Bearings.

This insistent sense of needing to be doing something other than what I am doing won't leave me. I'm convinced that I'm getting something wrong -- but I have no idea what the right thing is. Would I feel better if I pursued a serious writing project... or slept even more than I do already? I know I need to change something -- maybe something as simple (yet fiendishly difficult) as not worrying about the details of how I spend my days.

I say that, but I'm doing less than ever and it worries me. It looks like I'm on placebo rather than chemo, and yet I can't shake the noddy, dozey feeling. I've reduced my pain medicine and rearranged when I take it. I'm hoping to take even less, though that may not be possible right now. Despite this, I am still finding it hugely difficult to get up in the morning -- and that kills me because one thing I've done almost throughout this entire deal is get up in the morning, even if only to stand over B. so he doesn't forget his socks for the 239th consecutive day or read some box-car children to T. I feel like my presence helps L. as she negotiates the pentathlon course that is leaving for work, and I've been AWOL for a couple of months, pre-dating my surgery. It feels ominous in some ways, innocuous in others; I don't feel particularly sick, I just feel so tired. Maybe if I got my bearings.

Or maybe if I gave myself a kick in the ass.

I once worked at a fitness magazine. The January issue, of course, was the big best-seller every year, and it always offered 47 WAYS TO CHANGE YOUR LIFE! or YOUR BEST YEAR EVER! or STRONG! LEAN! FIT! IT'S ALL YOU! or 15 MINUTES, 3 MONTHS, THE BODY OF A LIFETIME. The magazine's staff, which had been given free gym memberships and in many cases spent lots of time futilely hammering away at them, soon got sick of this crap. Some of us advocated for a more direct approach to the January cover: GET OFF YOUR ASS! The idea was a non-starter; men want things easy, we were told. But January always rolled around again, and unless my memory is in out-of-control embellishment mode, we eventually tried a version of the butt-whuppin' cover line. It sold well.

And that's where I am right now. Not selling magazines: Trying to figure out the balance between finding my bearings and getting off my ass. Trying to accept my increasing physical limitations without being ruled by them. Prodding myself to do as much as I can -- but letting go when whatever it is I want just isn't going to happen.

The first prod might be waking up just a little earlier. I miss those sweet morning minutes with T. and her books. Given a chance, I might even miss B.'s ability to forget his socks every single day.

'Who the hell does?'

One thing that I like about this Zadie Smith piece is that at first it seems a little strange to thread a memoir of your father's death with ruminations on stand-up comedy -- and then it seems like the most inevitable thing in the world.

Also, ever since I read this, I've been thinking about the obvious-to-everyone-except-me notion that death is perhaps the defining experience of life, or at the very least is the signal event of a life, and yet we either do not experience it or have no means to communicate the experience to others.

With apologies, heeeeeerrreeeee's Zadie!

Conversely, the death we speak of and deal with every day, the death that is full of meaning, the non-absurd death, this is a place-marker, a fake, a convenient substitute. It was this sort of death that I was determined to press upon my father, as he did his dying. In my version, Harvey was dying meaningfully, in linear fashion, within a scenario stage-managed and scripted by the people around him. Neatly crafted, like an American sitcom: “The One in Which My Father Dies.” It was to conclude with a real event called Death, which he would experience and for which he would be ready. I did all the usual, banal things. I brought a Dictaphone to his bedside, in order to collect the narrative of his life (this perplexed him—he couldn’t see the through line). I grew furious with overworked nurses. I refused to countenance any morbidity from my father, or any despair. The funniest thing about dying is how much we, the living, ask of the dying; how we beg them to make it easy on us.
As it was, I missed the death, I missed the body, I got the dust, and from these facts I tried to extrapolate a story, as writers will, but found myself, instead, in a kind of stasis. A moment in which nothing happened, and keeps not happening, forever. Later, I was informed, by way of comfort, that Harvey had also missed his death: he was in the middle of a sentence, joking with his nurse. “He didn’t even know what hit him!” the head matron said, which was funny, too, because who the hell does?

Friday, April 10, 2009

Worth reading

Molly Wizenberg's A Homemade Life is a memoir, with recipes, of a young woman who is in love with food and cooking. It is also a tribute, almost unbearable to read at times, to her father; a man who radiated a sort of slouchy, goofy joie de vie that brought delight and illumination to Wizenberg's own life. When he becomes ill with advanced cancer and fails in awful ways she describes unstintingly, the book becomes a sort of coming of age story -- that's a lazy way of putting it, and doesn't get at everything, but it does capture Wizenberg's initial confusion and eventual serendipitous happiness.

I bought it in the Amazon Kindle format, which was a big mistake: many of the recipes look great, but it's hard to imagine cooking them from that tiny screen. I went that route for instant gratification and to save some money. Besides, as I already said, I wasn't sure I could read the thing. I'm sorry now for the electronics limitations because I wonder if L. might want to read it -- she lost her own beloved, silly father to pancreatic cancer when she was young, and he was relatively "old" at the time of his death. (Wizenberg's father was 75, which I thought might be a point of connection. Although some people apparently expected them to, neither L. nor Wizenberg ever extracted much comfort from losing beautiful, vibrant loved ones of advanced age.)

I have some quibbles with the book, but I 'm not doing a review here, and the great things about it far outweigh the caveats: check it if out if it interests you. Wizenberg's blog is Orangette.

Thursday, April 9, 2009

The knife inside

Two nights ago, I fell asleep without getting ready for bed. By the time I woke up, a few hours had past, and I was at least eight hours past my last dose of pain medicine.

Agony: my back was raging, my pelvis was on fire, and my mind and body were at war. I strained to stay as still as possible, as any movement would set off a cascade of sharp spikes of pain that might last a few seconds, or might continue, stuttering and intermittent, for a minute or more, long enough to steal all agency and optimism. The flaw in the stillness strategy: Getting to the pain medicine required movement. Freeing my left arm to prop up my torso, then rolling over to where the bottle was, opening it, and taking the pills, seemed impossible. I hovered there for a few seconds in an uncomfortable limbo, with neither stillness nor motion providing relief, when I finally moved the arm, rolled over and took the medicine.

Then, stillness. I tried not to move or even think, just listen and feel. Narcotics don’t take effect instantly; 20 minutes to full activity seems a reasonable benchmark to me, though they certainly seem to be doing something after about 10 minutes. But for the first few minutes, the dilaudids were working about as well as jellybeans. Every shift made me cringe. Every ebb and flow of my breathing, every gravitational shift and surge of the body’s fluids: I felt them all as they pressed toward the maw of pain at the core of my body, the pelvis. Sometimes pinpricks, sometimes sharp stabs, sometimes an ache surging into echoing pain. I pressed a hand against my thigh as if to remind myself that another form of sensation was possible.

I imagined that I was carrying a dagger suspended by filaments in my lower belly. The weapon was unadorned; nothing but a thin, sharp blade. Any movement could bring tissues and sinew in contact with it, creating sudden jolts of pain reminiscent of electric shocks. In this hyper-aware state, time crawled and I focused on the body’s unceasing activity: respiration and excretion, the twitch of a calf muscle, a sudden spike in sensitivity in a patch of skin asking for a scratch. All of these seemed to cause chain-reactions that led to something somewhere rubbing up against the dagger. I gritted my teeth without relief. Some red lever in my brain is set to “pain” now. There is nothing but the dagger. I imagine the pocket next to my left hip leaking acid on the nerves that run down my legs and up my back. I worry about the old internal radiation burns, healed we hope, but caked with scaly scar tissue that could begin cracking and weeping strange fluids at any time. Even my ankle, with which absolutely nothing is wrong, cries for attention; I slept on it oddly early in the day.

I wait, I wait, marveling at all the complexity and interdependence, and suddenly the cloud lifts, the pain drops, the dagger shrinks. After twenty minutes or so, the knife is gone. I turn over again, slowly and painfully, gather my pillows, and close my eyes.

Tuesday, April 7, 2009

Being around

I used to joke about wanting to have an entourage (though I probably called it a "posse" back in those naive days), but it's more true that I would like to be in an entourage. Less thinking.

I've seen this picture around the net (found it here today) a few times over the last couple months, and I love it. I'm aiming to be the guy standing to Kanye's left.
I thought of this picture after I read an article about the actor/rapper Ludacris and the Singaporean restaurant he launched in Atlanta. There were some great details in the piece -- I'd love to see someone write an immersive, well-reported Tom Wolfe-style novel about the world of a rap star. Not one of the gun-toting, misogynistic jackasses, but a quirky Ralph Lauren-loving aesthete. Until someone writes it, two vignettes from the life of Ludacris:

"...until Straits, his biggest commitment to food was sending his childhood friend Willie Box to Le Cordon Bleu in Paris. "I happened to stop by his house one day, and he'd made this soul-food spread," Ludacris recalls. "It was incredible, but Willie said, 'I was just cooking." So I said, 'If this is something you really want to do, I'm going to put you through cooking school. Then you're going to be my chef."

"Ludacris had one regret: The Cognac he'd blended in France with a mix of XO and VSOP brandies wasn't ready to drink yet, so he couldn't serve it at the party."

'Turn me into song; sing me awake.'

It's National Poetry Month. A friend of mine received this from them and passed it along:
Untitled [This is what was bequeathed us]
by Gregory Orr

An excerpt from How Beautiful the Beloved

This is what was bequeathed us:
This earth the beloved left
And, leaving,
Left to us.

No other world
But this one:
Willows and the river
And the factory
With its black smokestacks.

No other shore, only this bank
On which the living gather.

No meaning but what we find here.
No purpose but what we make.

That, and the beloved's clear instructions:
Turn me into song; sing me awake.

Monday, April 6, 2009

Oh, no: placebo

I quickly realized I would probably be able to guess whether I was randomized into the drug or placebo group, but I wasn't in a hurry to figure it out.

When I began the clinical trial, Brivinib spiked my blood pressure to 160/101 and beyond; a normal reading for me, even now, is more like 135/85. After getting out of the hospital, I kept my head in the sand for a few days: I felt fragile and I didn't want to find out I might likely be on placebo. By this weekend, though, I knew I needed to check; you can't walk around unmedicated when you're busting triple digits on both your BP numbers. My reading was something like 110/60. A visiting nurse who came by to pull my stitches the next day got a similar result.

So it looks like I am not on the drug. I haven't taken beta blockers for close to a month now, and Brivinib/placebo is doing nada to my pressure a week or more after I restarted taking the pills. The positive spin, I guess, is that my blood pressure is still low, so perhaps the beta blockers are still active in my system, masking Brivinib's activity. Or it may be the pathways that regulate my blood pressure have adapted to the Brivinib and they no longer go crazy when exposed to it. But in my heart I feel like I'm not getting the drug any more, and I haven't slept a decent night since I found out.

After I got that first, fateful low blood pressure number, L. asked me what I thought it meant, and then she asked me how I felt. The most reasonable questions in the world, but I couldn't answer the second one. How did I feel? I felt terrible. I felt numb. The hardest part of all this isn't the operatic rage -- the shouting, the sobbing, the almost overwhelming pain that yesthisishappeningandnothingcanSTOPIT -- because that makes sense. It might even make you feel better. The worst is the numbness, the feeling that I've lost another little bit of my humanity because I'm too exhausted or sad to know how to respond. I hate the idea of being seen as an invalid by people, because there's so much here; I am boiling over with creativity, love, generosity, life. And other times, like when you finally get some indications (*) that something is working for you and you have to stop because you fell on the wrong side of some BS rules, you feel numb, and drift, and amble through sleepless nights without even knowing why.


(*) But here's the good cancer voice: "But you're going to get back on the drug eventually if indeed you are on placebo, which you don't actually know you are, you only suspect. Plus, you can actually breathe. And tell them about the other good news besides the shrinkage in your big tumor: The swelling in your perineum, which increased some when your disease was progressing, shrank back during this most recent Brivinib cycle." So there. Thanks for your contribution, Good Cancer Voice.

Ramping up

When the local and seasonal food bubble bursts, it's going to be ugly. I see here that people are paying $15 a pound at the New York greenmarket to get the first ramps of the season. Mind you, these things lack subtlety, to say the least, as nice as it is to see something green and edible poke from the ground in the east.

And for your $15, don't think you're getting the good stuff:

None growing here in waaaay upstate yet...but any day now, we think. We hope, too.
I gotta tell you, they are one thing after being transported six-ten hours by truck to your market; they are a whole different something 20 minutes out of the dirt, dipped in salt crystals and eaten with fresh bread and butter.
That said the price will plummet over the next few weeks before they're inedible. I'll still be holding out for something I find a little tastier.

Wednesday, April 1, 2009

A small pleasure

I checked into Sloan Kettering's urgent care center on March 12. That morning, though I was desperate to take a shower, I couldn't stand up, so I took a bath of sorts at the hotel. (It would have probably went better if the tub had a working drain.)

From there, what happened happened, until I finally a got a phone call from a thoracic nurse today. They had left the discharge section of my hospital orders blank and other stuff was on my mind, so I had been ignoring the wad of itchy tape on my chest. A few minutes talking with the nurse, though, I had permission to remove the tape (like a Brazilian wax, but... cruder) and take a shower. My first shower since the second week of March. I was wobbly, my skin was irritated from the tape, but actually getting clean for the first time in so long was a joy, another milestone in the journey back to being a real person.