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Monday, December 29, 2008

Holidays Gone By

My ISP connection has been acting up; sorry for not posting recently. The error reports blame Windows; I am daunted by the prospect of tackling the fix. Maybe it's time to buy a Mac.

Anyway, a good time (and a quiet time) was had by all in a small gathering at friend and sister C2's house. We ate fairly sparingly, all things considered, and exchanged many silly presents. For our next holiday outing, we will attend a friend's wedding on New Year's Day (television on mute available for Bowl games after the ceremony).

I can't think of anything better to ask for.


Friday, December 19, 2008

Waiting for the Storm

If you happen to be watching The Weather Channel right now (it's about 7:15 a.m. EDT) you can see a huge swatch of magenta squatting over the upper Midwest. That's the weather system outside my house right now. It's been raining steadily for about an hour and a half; it's cold enough for freezing rain. It's too dark to tell what's happening; Ohio may be a "swing state" when it comes to politics, but when it comes to The Weather Channel we're just a wide spot between interstates and New York and Chicago.

I've got stockpots full of water on the stove and the bathtub is full. I've got bread and milk and cheese in a cooler in the garage, and peanut butter and crackers inside (oh, and chocolate too, but that's always on hand). I've taken a shower. I've pulled out all of the batteries and flashlights and have them sitting out next to candles and matches. I've got blankets and radios close at hand. I dusted off the old phone so that I'll stay connected if the power goes out. (Most people don't know in advance that digital phones don't work then; and it's one reason why we've kept our land line).

There's plenty of cat food and litter, but Jezebel will have to rely on her hunting skills for the moment until I know for sure what's going on out there. My mom lived alone in the country for 16 years after my dad died; one of the reasons she moved to town was because she was afraid to go outside when the weather was bad, for fear she would fall in the driveway and nobody would find her until it was too late. I don't think I'm that nervous - yet - but still don't want to test the limits.

Metaphor for life in general? Waiting for the storm, hoping that we're as prepared as we can be, and hoping that we don't find out we're not ready for it ... who knows, it's too early in the morning to be "deep".

All I lack is Saint H, who stayed in Columbus last night to avoid getting caught out in this stuff. I hope he can get home tonight. In the meantime I'll curl up with cats and knitting and books, and see how long this lasts.

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Saturday, December 13, 2008

Lifetime Supply

Friend and sister C2 and I have kidded each other for years: She'll take my lifetime supply of coconut if I'll take her lifetime supply of lima beans. Or I'll take her share of pears for my share of red wine. All in good fun, of course. But what if it isn't?

The British National Health Service has attempted to come to grips with drug costs for treatment of chronic disease as well as catastrophic illness with a payment formula. NICE [National Institute for Health and Clinical Excellence, a government agency] establishes a protocol for maximum payouts. As outlined in this article, the outcome can be dismaying. The process is illustrated by Bruce Hardy, a kidney cancer patient whose disease has progressed alarmingly since he was refused coverage for Sutent based on projected costs under the formula. The reasoning behind the decision: Sutent and similar drugs extend life only by an average of six months, according to the NICE deliberations, and the drug costs are extravagant based on these results: "But at that price [$54,000], Mr. Hardy's life is not worth prolonging ..."

I guess I don't know how to respond to the question, what is a life worth? What cost is "justified"? Since August 2005 I've received treatments totalling over $75,000 in insurance benefits for Sutent and Nexavar alone, disregarding other attendant drugs and prescriptions that I've taken to ease and control side effects of the medications or the disease. And my needs have been relatively modest compared to those who must take the full dose of Nexavar; had I been prescribed the full dose for the past 3 years, those insurance benefits would have skyrocketed to nearly $250,000, again just for Sutent and Nexavar.

Can we truly say that these drugs are effective "only" for six months on average? The drugs are fairly new, their effectiveness (less and less likely to be questioned) is still being tested, and happily the end stage results for their use keeps being pushed further and further out on the timeframe. Biologics are expensive, and no doubt there could be ways to reduce their costs. We seem to operate under a "whatever the market will bear" mentality and that free-wheeling free-market approach may well be inappropriate when people's lives are at stake. If one's life is extended and one is reasonably self-sufficient because of the medications, as I am, is the cost "worth" it?

I don't dispute that extraordinary measures are extravagances when applied to someone whose prognosis is poor and likely to remain so. I certainly don't expect extraordinary measures to be taken for me when the time comes; quality of life is uppermost in my mind, and I don't want to linger, insensate, when my disease progresses faster than any drug can control it. But I can't help thinking about Mr. Hardy: I was in his position in August 2005, I was given Sutent and Nexavar, and I've benefitted greatly from it. What kind of shape would he be in now, had he had the same chance? One positive note: given public outcry, there have been some modifications proposed to the NICE standard, so it's not written in stone - yet.

Who will decide what's best: Bean-counters? Physicians? Patients? This is a lifetime supply of conundrum that I'll gladly trade for something else. I don't think I'll get any takers, though.

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Wednesday, December 03, 2008

Little Things Make Me Happy

Tuesday morning I took the best shower I've had since we moved into this house. The master bath has a 5' shower enclosure, and the shower head was at least 7' off the ground - I could reach it, theoretically, by standing on my tiptoes, but who wants to do that in a shower? The spray was inadequate and messy, flinging all over the walls of the enclosure; all together an inefficient and unsatisfactory shower setup.

Saturday I finally located a shower head extender so that I could drop the shower head by about 15", with pivot points at the pipe and head so that it would be completely adjustable. When Saint H took off the old shower head to install the extender, we found out why it was so awful: The installers had broken the internal diffuser and, rather than replacing the stupid little plastic piece or bringing out a new shower head, the broken one went up. So I ordered my favorite low-pressure shower head, by Oxygenics (I'd been threatening to do so for a long time) - one for the master bath, one for the mudroom shower.

Monday night all the pieces came together, and I was thrilled with the results. I realized after the shower that I'd come to hate taking them under the old regime. Now - just keep me out of it! (No, it doesn't take much to please me)

Sunday was our 18th wedding anniversary. I've now lived with Saint H longer than I lived with my parents. I wouldn't have missed it for all the world -

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