Friday, October 31, 2008

Of pens and patients

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.

Wednesday, October 29, 2008

Morning, noon, night

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.

Tuesday, October 28, 2008

I'm with Reagan

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). 

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.

Tuesday, October 21, 2008


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?

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!

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

Thursday, October 9, 2008

In search of side effects

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.

Wednesday, October 8, 2008

And so it begins

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.

Wednesday, October 1, 2008


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

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