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.
Tuesday, September 8, 2009
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:
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.
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.
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