Thursday, November 19, 2009

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.


*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:

Los Angeles Times obituary:

Tuesday, September 8, 2009

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)

Wednesday, September 2, 2009

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.

Friday, August 28, 2009

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.”


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.

Thursday, August 27, 2009

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.

Wednesday, August 26, 2009

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:


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

Some Ted Kennedy Links

Tuesday, August 25, 2009

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.