by cg on November 16, 2009
It all started at the gym this morning, where I’m trying hard to adhere to physical therapist Heidi Engel’s strength routines, called “pyramids,” in which the trainee lifts progressively shorter sets of heavier weights.
On one machine, the Dual-axis Row, I’m up to 140 pounds, which is getting back up to where I was before our ‘little problem‘ last summer. As I pulled back hard on the bars, my left hand abruptly died (a ‘feature’ of neuronally-challenged muscles) and the arm flew off in a shot, throwing me suddenly and completely off balance, a twisting motion that carried me off the machine’s narrow seat, wherein I came to renew my relationship with Mr. Floor.
Mr. Floor and I had quite a connection back a couple years when, newly half-paralyzed, I was still learning the operational envelope of the new neural ‘downgrade’, but we haven’t spent much time together lately. Naturally, me crashing into my old friend set off a minor flurry among my gym mates, who rushed over to help. One fellow even had the presence of mind to check to make sure I wasn’t having a hear attack. No, just my hemiparetic muscles reminding me that we still have work to do.
Red faced, I got back on the machine and finished my routine before making as low-key an escape as I could manage. Then it was off to Safeway – the nice new one on El Camino – for a ‘big’ shopping outing – we were out of all the bulky stuff like paper towels, bathroom supplies et al. A quick stop at the new Peet’s in the same complex revealed the usual crowd – it’s basically the cheapest office you can rent in Menlo Park (unless Le Boulanger can claim that honor).
Then home, only to find a Jaguar was blocking more than half the driveway – given the hour, the driver was likely an Oak Knoll School parent waiting for a child. I approached as closely as I could, but the driver refused to budge. I sat, feeling foolish, in the street, unable to enter my own driveway, flashing turn signal and other efforts bringing no response – the driver kept her head steadfastly averted (a behavior we have previously noted). Cars started to back up behind me, so I got out of the street by driving over a corner of the lawn – trying to avoid the sprinkler heads – and then angling the car into its normal slot as best I could.
Even when I backed the car straight toward the Jag, twice, as I was trying to straighten out, the driver kept her head rigidly focused on her lap, where some small device (an iPhone perhaps?) held her entire attention.
Usually, when we do a ‘big’ shopping, we back the car up to the garage, shortening the number of steps we need to stump to get everything into the house. I’m sure you able-bodied folks think this trivial, but it’s a bigger deal here in hemiplegia land, where every step is a minor project, and weak limbs struggle with weights like grocery bags. In any case, the Jag’s position made backing in impossible.
Anyway, we were on our fifth trip to the opened hatch of our Ford – mere feet from our nemesis – when the woman suddenly looked up at me and very animatedly began mouthing something. I couldn’t hear what she was saying (admirable soundproofing in Jags, I guess) but I don’t think it was “I’m sorry.” Rather than confront some enraged CEO or VC (or, perhaps, wife of a CEO or VC), I fled – though I’m not sure what my crime was – she had been blocking the driveway for some 20 minutes at this point, and I wasn’t bothering her – quite the contrary. Not that some Oak Knoll School parents aren’t wonderful – they are (one woman brought my recycling bins up from the curb one morning). So go figure… at the least she could have helped me with the groceries…
by cg on October 22, 2009
We have been thinking about statistics a bit recently (indeed it was the root cause of the letter, as was expounded in yesterday’s post.) As we pondered the topic, our focus drifted (can one focus and drift?) to the famous quote that inspired the title of this post.
The inevitable Wikipedia plunge revealed, to no great surprise, that the phrase’s authorship, variously bantered as belonging to Disraeli, or Twain or Dilke, or even an unnamed judge who once reportedly said that there were 3 kinds of unreliable witness: ’simple liars, damn liars and experts.’
On the witness angle, we feel we must point to an experiment done by Daniel Simons (U of Illinois) and Christopher Chabris (Harvard). Few will value ‘eyewitness’ accounts as highly after they’ve considered this result.
The Wikipedia article also pointed, serendipitously, to Stephen Jay Gould’s article “The Median Isn’t the Message” which he wrote in 1984 after being diagnosed with abdominal mesothelemia, a serious ‘terminal’ cancer in 1982. Confronting the statiscally-significant median survival rate of his cancer – then 8 months – he wrote:
The problem may be briefly stated: What does “median mortality of eight months” signify in our vernacular? I suspect that most people, without training in statistics, would read such a statement as “I will probably be dead in eight months” – the very conclusion that must be avoided, since it isn’t so, and since attitude matters so much. …
If the median is the reality and variation around the median just a device for its calculation, the “I will probably be dead in eight months” may pass as a reasonable interpretation. …
But all evolutionary biologists know that variation itself is nature’s only irreducible essence. Variation is the hard reality, not a set of imperfect measures for a central tendency. Means and medians are the abstractions.
Statisticians, in my experience, concur with Gould and will tell you that statistics only apply to populations – they are meaningless when applied to the individual. The average American male may be 5 feet, 10 inches tall, but, if you happen to be Shaq, the statistic is all but meaningless.
In any case, Gould lived for 20 years after receiving his 8-month prognosis. I mention this, of course, because my cancer, glioma, comes with a 4-year median survival rate. According to this datum, I have a 50% chance of being alive this time next year (I was diagnosed in October, 2006), and have indeed, used that as a yardstick for planning events. Two years ago I started putting ‘things in order,’ which has resulted in me being better organized I’ve ever been.
Thus I had planned, in the countdown to my presumed expiration date, to inform the old school that I would be relinquishing a (visitor’s) board seat and possibly other responsibilities and proclivities as I focused on the important things, like my not-quite-2-year-old granddaughter and good Pinot Noir.
Gould’s tale has given me welcome pause to rethink the letter, which still sits, unsent, on my Mac’s right-hand monitor, the one reserved for serious projects. On the one hand, a recent, rigorously-conducted study tends to discount Gould’s contention that ‘attitude matters:’ on the other hand, every serious MD/PhD I know, people who deal daily with the terminally ill, believe, almost to a soul, that Gould is right. I hope these aren’t the judge’s ‘experts’…
by cg on September 29, 2009
Errands, chores, 4 InMenlo assignments – I barely had time to research DAM systems for the new, soon-to-be much improved Gulker Photo Archive (and we did learn a lot from an O’Reilly title on the topic). Indeed, today’s InMenlo posts went through an entirely new workflow, and we managed to add useful information to about a thousand photos made this past May in Ameugny.
Mais oui, we are feeling a bit exhausted after today’s travails, but happy, too, to have the stamina, again, to face days like this. Tomorrow is already fully-booked with an MRI, neuro-oncology consult (Dr. Susan Chang) and chemo, but Thursday and Friday loom, unbooked as I write. Memo to admins, hold all calls and email…
by cg on September 21, 2009
We have been amused, lately, by distractions like the rumor of the ‘Super-heavy Suburban.’ Another fun diversion has been learning how to bake communion bread. When our 40-year-old mixer all but died in the middle of the last batch, we had to research – extensively – and, ultimately, purchase a new machine (we chose the Cuisinart, on closeout at Fry’s).
But, it’s true that an undercurrent in my life this past summer has been the dip in my strength and mobility, caused by edema, or brain swelling related to my brain tumor. I was slow to come to grips with the decline, and resisted going back on chemo, which, in retrospect, wasn’t wise. Two infusions into chemo, and a lot of my recently-lost left side has come back. I’m tying my shoes again, getting bowls down from a high shelf again and otherwise getting back to the body I’d reclaimed from the near-complete trainwreck of two years ago.
As we were nosediving this past summer, there was no way of knowing if this was not the beginning of the end. Half of stage-3 glioma patients at UCSF live for 4 years, according to the published data when I was diagnosed, but statisticians will tell you that statistics are near-meaningless from the standpoint of the individual. The average American male is 5-feet, 10-inches tall. But, if you’re Shaq, or anyone else for that matter, the statistic is meaningless – you are what you are.
Which is to say, the statistic is not an insurance policy that I’d make that cut (and I’m still some 18 months from being there) and, given my luck (one is far more likely to be struck by lightning than contract glioma) I won’t be the one in two who gets there. Nevertheless, I’ve kind of made that my horizon and planned my life around it.
This summer’s crash has made me realize that, ultimately, I’m not in control of this thing. It will do what it’s going to do, and I’m just along for the ride. I can work at rehab, and make what I’m given as good as it can be, but that’s all I can do (and count on me doing that much).
But, the scare has crystalized my thoughts on the topic of what I want to be doing when events overtake me. So we have been making an inventory of important things, hence the black ops center, which enterprise mainly is focused on discovering, and archiving, those small contributions I have made to my era. We’re also thinking about days to come, and where we want to spend those days…
by cg on September 10, 2009
Sheesh, what’s a brain cancer patient gotta do to keep the readers happy? Apparently, more than I’ve done these past 2 days.
Fair enough. Y’all know my last 2 days were (for me) hard, because I grumped about it, and did little else. Trips back up to the hospital by car and train, back into chemo, yada yada and yuck! But, for all I know, your last 2 days may have been really shitty, compared to my measly hemiparetic grumping.
I appreciate that my woes are peanuts compared to some folks, many of whom I bump into in the neuro-oncology waiting room at UCSF – I think you’d be hard-pressed to find a grimmer space in a first-world hospital. UCSF’s world-class neurology and oncology clinics attract many very, very, even desparately-ill people: my heart aches, particularly when I sit on the intake side on the 8th floor at 400 Parnassus Avenue, as I did this past Tuesday. There is no such thing as a ‘good’ neurological ailment, particularly a cancerous neuro ailment, and the waiting room, sadly, is, often, a little (or larger) shop of horrors.
So, if you’re reading this in a wheelchair, and using a straw clenched between your teeth to access my, probably, poorly-accessible blog, my apologies (and sympathies). You made an effort that few able-bodied people would even begin to appreciate, only to be greeted by the line “We drove up this time (!), but still, find ourselves too tired to write much,” and, saints above, would you just love the opportunity to be exhausted by driving to an appointment that included navigating, on your own two legs, a giant campus? My sincere sympathies and mea culpa for not thinking of you.
Given how I felt at the near-helpless nadir of my hemiplegia/hemiparesis, I’ll bet you feel like I should be out there, pushing my limits and wrangling interesting things to photograph, and write about. You know what, you’re right, even if you aren’t in a wheelchair…
by cg on September 8, 2009
We were at UCSF for more neurological evaluation today. We drove up this time (!), but still, find ourselves too tired to write much at this point. Back up tomorrow for a morning of physical rehab followed by (sigh) chemo…
by cg on September 1, 2009
We mentioned, yesterday, our frustration at not being able to find a photo, one of about 50, that we had snapped in Chicago in 2006.
These were the last photos I made before my first seizure and subsequent diagnosis of brain cancer, so I have some investment in locating and preserving them. In particular, I remember a shot of a curving staircase that descended from the sidewalk to a subterranean mall.
A couple of shots have survived on the blog, in web resolution only, sadly. The last one, seen above, is dated November, 2006 so I’m searching backups that go back 3 years, given that my current iPhoto has near-complete amnesia of photos taken that first week in October. And, oh yeah, we installed Snow Leopard today. Still, no dice – no Apple-variety Leopard seems to know how to find Chicago.
I can tell from the image file sequence numbers what’s missing. iPhoto has preserved every image from my old, and much-loved Leica Digiluxx II up to L1050750 – there is then a gap up to L1050794 – 44 pix, the more dear for not being able to see them. Apparently this lacking iPhoto db has been backed-up everywhere… digital archeology commences…
America lost one of its greatest legislators last night, to glioma, the same cancer that I have (though mine is a less aggressive form). Besides our cancers, he and I shared the attention of UCSF’s Dr. Mitch Berger (who operated on me, and consulted on Senator Kennedy’s surgery). My current state, and Senator Kennedy’s death, remind me of the path that lies ahead. I pray that I will walk this road with the courage that Ted Kennedy showed…
Our 2-gimp household has seen better weeks. It’s not that Linda’s Achilles tendon isn’t healing nicely, or that my recent decline has gotten any worse, it’s just the friction that disability applies to every action, great and small, is so wearing. Patience erodes, tempers shorten, and things get harder still. Sigh…
We managed to hit the deck again this morning, while on a lovely walk in Portola Valley with Scott and Linda. Linda, largely recovered from her Achilles tendon surgery had power-walked on ahead of us.