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This morning in Link Salad, I posted a link to a piece on the Freakonomics blog on the ROI of cancer spending. It's a serious question, and such cost-benefit analysis, along with risk-reward analysis, is a critical element of social policy. As ![[info]](http://l-stat.livejournal.com/img/userinfo.gif) ericjamesstone has quite rightly said to me in a slightly different context, you don't make law (or policy) based on individual cases.
But in my individual case, this cost-benefit analysis directly impacts my short- and long-term mortality risks.
Without digging into the details (though I do have all the paperwork filed here), my Excellent Cancer Adventures of 2008 cost about $100,000 all told. I paid about $6,000 of this, the rest of the cost was borne by my insurance carrier. Most of this was surgery and hospitalization costs, along with some fairly spendy tests and a bunch of psychotherapy.
My New Adventures in Cancer, commencing in May of 2009, cost about $50,000 in that year. The spending pattern was similar to 2008's, mostly surgery and hospitalization, with tests and head shrinkage. i don't have the tally yet, but I believe I've paid about $5,000 out of pocket this past year.
Chemotherapy, primarily due to drug costs, will run about $180,000, I believe. Throw in another $20,000 for a couple of CT scans and whatnot along the way, and by the midyear mark, another $200,000 will have been spent on me. About $6,000 or more of that will be out of my pocket. (And no, I don't make that much money. Cancer is expensive, even with good insurance.)
Tally it up, and by next July we will see a total of $350,000 having been spent keeping me alive over a two-year span, with $17,000 of that coming out of my pocket. The balance of $333,000 is borne by the insurance carrier, and thus somewhat less directly by my employer, their investors, and society in general. All of which is, incidentally, considerably more than has been expended on me in my entire life put together prior to the onset of cancer.
What is my life worth to you?
For example, if you're a conservative who believes the current healthcare finance system is "the best there is", and that the current healthcare reform effort will ruin American medicine, then you believe that the $1,000,000 lifetime limit my insurance carrier places on my benefits is appropriate. At my current burn rate, in three or four more years I'll run out of benefits, and you believe it's ok for me to crawl off and die.
Obviously it's not that clear cut. For one thing, the hoped-for, and reasonably expected, result of chemo is that future treatments will not be necessary. This is not a given. For another, if I were out from under the insurance umbrella due to lifetime limits or unemployment, there are programs for the uninsured. But my standard of care would drop precipitously, and I would literally be bankrupted by the personal financial responsibilities. the_child would have a much poorer childhood, and a much more difficult time getting a college education and a strong start in life, for example. And even then, society is still paying most of my bills, just via different mechanisms than a private insurance carrier.
Obviously, the benefit to me personally of continued life and health is incalculably high. But I'm only bearing about 5% of the costs. And I'm damned lucky I'm well-paid enough to even manage that much. What is the cost worth to you? To society at large? Because there's a wall at the other end of this tunnel, not a light, and someday soon I'll smash into it at the speed of mortality if I'm only a little bit unlucky.
What would your politics be in my position? What would you think of the conservative opposition to reform if you were me? There are some problems the free market will never solve, and I'm living in the heart of one of them.
Meanwhile, chemo starts tomorrow. calendula_witch arrives today. shelly_rae has been taking good care of me. I'm scared spitless, but I'm going to live. Literally and figuratively.
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Your Thursday moment of zen.
Sunset, eastern Washington State. Note crepuscular rays. © 2006, 2010 Joseph E. Lake, Jr.
This work by Joseph E. Lake, Jr. is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.
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| 2010-01-07 05:23 |
| [links] Link salad was waiting on the pad, all systems were go |
| Public |
| art, books, cancer, conventions, funny, health, healthcare, links, movies, personal, politics, portland, reviews, stories, videos |
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Don't miss the announcement of JayCon X [ jlake.com | LiveJournal ] — My 10th annual 37th birthday party, plus my end-of-chemo celebration, next July.
Something weird this way comes — Rick Klaw with a piece on the New Weird, in which I am briefly mentioned.
A reader reacts to The New Weird — Including comments on my Dark Towns story, "The Lizard of Ooze."
The new issue of Locus has a very interesting and thoughtful Paul Witcover review of my recent novel, Madness of Flowers — Review isn't on the site, unfortunately. Must see the dead tree edition.
Interzone 226 is out, with my story "Human Error"
Beware of Science Fiction — Christian fundamentalist views of our field. My favorite: Heinlein was a nudist and practiced "polyandry." Um... (Via @pyr_books.)
A Bad Attitude — Cancer blogger Amy on the perils of positive thinking. And Freakonomics on the ROI of cancer spending. Now here's a touchy subject.
Jonah Goldberg reveals George Lucas is either prescient or has a time machine — Criticizing the political messaging of Avatar, the prominent conservative said, "There are dozens of movies that have taken shots at Bush, starting with 'Star Wars' movies." Star Wars: 1977. George W. Bush: 2001. Ahem. (Note: ericjamesstone objected seriously to my characterization of this on Twitter yesterday, when I edited the Goldberg quote for length.)
?otD: Why me? There must be a thousand other guys.
1/7/2009 Body movement: 30 minute ride on stationary bike Hours slept: 6.0 This morning's weigh-in: 230.6 Currently reading: (between books)
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Mark your calendars now. In celebration of my natal anniversary, JayCon X, my 10th annual 37th birthday party, will be Saturday, July 3rd, from 2 to 5 pm at the Flying Pie in SE Portland. Come help me celebrate both my birthday and my successful completion of six months of chemotherapy in late June.
We're partying because I was born, and because I will have beat cancer. Again.
Flying Pie Pizzeria
7804 SE Stark Street
Portland, 97215
(503) 254-2016
http://www.flying-pie.com/
[ Google Maps ]
As is traditional for JayCon, Paul Carpentier is specifically not invited.
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Chemo is in two days. Yesterday was crazed. I had a physical therapy appointment at the clinic (which is a separate facility associated with the hospital I use). Ran long.
Had to pick up some FMLA paperwork at the Medical Oncology unit. Expected that to be a five minute process, was there for nearly an hour. A productive, entertaining hour, admittedly, as a very sharp and funny oncology Nurse Practitioner talked to me at length, but not what I'd expected.
Had to get some bloodwork done — checking for celiac, a potential culprit in my ongoing bowel issues — they were training a new phlebotomist and grew very excited when I gave my standard, "I'm a hard stick, here's what you need to do, yadda yadda" routine. (My personal best is 13 jabs to draw blood. Sometimes they have to call in IV Therapy to hit blood in me. I've never been a junkie, but I have deep, flabby veins that run away from needles at the best of times, and over the past two years of cancer treatments have accumulated some impressive vein scarring in the usual places.) So I cheerfully submitted to being a jab test dummy and training target, and that took about twenty minutes instead of the usual three to five. (The phlebotomist's apprentice did finally get me in one jab, so mad props to her.)
Finally, rather late due the lengthy delays at the clinic, I ran off to the train station to collect shelly_rae. Later that day, saw my therapist.
Here's where I am...
- I have almost no mental and emotional reserves. I am quick to be crabby, and I miss jokes. This is Stress 101, but I still don't like it.
- I have been eating erratically, including a highly unusual amount of junk food. Not even my most ordinary comfort eating patterns, either. Stress 101a, methinks.
- I am terrified of chemo at many levels, but quite confident that I will be the master of this process, rather than letting it master me.
- On Thursday night or Friday morning, I will probably lose my shit utterly. calendula_witch and shelly_rae will scrape me up off the ground and keep me going.
- calendula_witch and I have developed a ritual for marking the chemo sessions which impressed my therapist. She, I and shelly_rae will be implementing the first part of this tomorrow evening. Yes, I will document it.
- I am planning to liveblog and/or Tweet my first infusion session on Friday, as much as is practical.
That's me. Jumbled, frightened, determined. And may I hear a hearty "Fuck Cancer!" from the crowd?
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Avenue Brand Oranges Crate Label — Some classic art of a sunny day for all of you in the deep freeze.
The Zeppelin-Staaken L — A rather improbable looking WWI flying boat.
On Kepler’s First Planets — The exoplanet game gets raised.
Genetic Mutations of the Year — Linked for the awesome headline.
Vaccines work — Data, on the hoof, courtesy of Bad Astronomy. Antivaxers are as crazy as evolution denialists, and even more evil/stupid.
Failblog with a sad, sad school note — Religious insanity peeing in the educational pool. I feel real sorry for the kids in this family.
Beck Loses One Wing of Wingnuts — Glenn Beck (crazed conservative talk show host) pisses off Birthers (crazed conservative faction). Pass the popcorn, please.
?otD: Deplane or not deplane?
1/6/2009 Body movement: 30 minute ride on stationary bike Hours slept: 6.25 This morning's weigh-in: 228.0 Currently reading: (between books)
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Your Tuesday moment of zen.
Me as Santa Claus, circa 1988. Photographer unknown.
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| 2010-01-05 04:59 |
| [links] Link salad is on a timeless flight |
| Public |
| calendula, cancer, culture, health, healthcare, links, personal, photos, politics, polls, publishing, science, stories, tech |
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Best Fantasy Story of 2009 Poll and Contest — Fantasy magazine with a poll. I note immodestly that I have a story in this poll, "People of Leaf and Branch".
What Could Have Been Entering the Public Domain on January 1, 2010? — (Scott Edelman via scarlettina.)
calendula_witch with some more photos of my scars (and tattoo) — Slightly NSFW.
Smile! You've got cancer — Barbara Ehernreich on cancer and the tyranny of positive thinking. (Thanks to danjite.) Per my brother, see also this related piece in The Economist.
Looking Into the Past — A cool site restaging photos. (Thanks to willyumtx.)
The Future of Human Spaceflight — Are astronauts close to extinction?.
The Year of the Assassin — A leftie semirant which I found pretty interesting. Lots of comments on the American attitude toward war, including this gem: if we are no nation of warriors, from the point of view of the rest of the world we are certainly the planet’s foremost war-makers.
American Evangelicals and the Ugandan anti-gay hate law — You really are responsible for the consequences of your beliefs, people.
?otD: Are you a rocketman?
1/5/2009 Body movement: 30 minute ride on stationary bike Hours slept: 5.5 This morning's weigh-in: 229.2 (!) Currently reading: (between books)
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Every single time I see my oncologist, my insurance carrier informs me by mail a few weeks later that she is out-of-network and pushes the entire claim to my (substantial) out-of-network deductible. Every single time, I call my insurance carrier and wrangle with them, until they admit she is in fact in-network, and reprocess the claim. These calls take up to an hour a pop. Every call is as if no such call had ever taken place before in the history of time. Completely ab initio, always.
I have had the clinic call the provider line. The carrier's provider line people have repeatedly assured the clinic that my oncologist is in-network. There is a data mismatch between the provider database and the claims database, because my oncologist is never in the claims database.
Today's call was especially frustrating, because the front line rep I spoke to told me that none of the 2009 claims for my oncologist had been paid, they were all being held to be reprocessed as out-of-network. (This is a difference to me between $40 per visit and almost $300 per visit.) I knew this couldn't be true, because I'd have a stack of nastygrams from my clinic's billing department if all those visits had gone unpaid. When I asked for a supervisor, my call got dumped. I finally fought my way back through the automated menus and two layers of reps for another supervisor, who told me the same thing the front line rep had told me. I dogged him, politely despite my frustration, until he finally decided the previous claims had been paid by being reprocessed to the clinic's provider group code instead of my oncologist's (allegedly non-existed) provider code. He also told me they wouldn't do that any more, that I needed to get the clinic to bill under the provider group without including a provider name. All of this joy took over ninety minutes to work through.
The clinic, of course, has told me in the past that the carrier's provider line assures them my oncologist is in-network and none of this is necessary. I'm also very dubious of the carrier being willing to process a claim without any provider being named, since that seems like Fraud Risk 101 to me.
What it boils down to is a problem no one can fix, that I own, unless I want to start paying out-of-network costs. I will see this oncologist every two weeks for the next six months as part of my chemotherapy regimen, which means I will spend thirty to ninety minutes on the phone every two weeks for the next six months convincing my insurance carrier of the same damned thing every time, unless someone can fix this. And god help me if I were a head injury victim, or mentally ill, or deep in chemohead, say, and unable to be articulate, firm and persistent, and deftly employ the command of managementspeak and customer service lingo that my twenty-five years in marketing and sales have given me. Because basically, I'd be screwed if I weren't so overqualified at dealing with indifferent and stupid bureaucracies.
Meanwhile, they steal my time, sap my energy and morale and generally make my life difficult, solving the same damned problem every time.
So, all you conservatives who oppose healthcare reform because our current system is "the best there is" can suck on it. Kiss my cancer-ridden ass. My healthcare delivery is fine, even magnificent, but the magical free market private sector health insurance is a retarded behemoth that is sucking my time and energy which I could be using to almost any other purpose so much more effectively. A decent single-payer system, combined with the current competitive public-private provider network, would deliver exactly the same quality healthcare at a substantially reduced cost and a fraction of the hassle.
Every one of you "death panel" nuts and "don't let the Democrats win this one" political thinkers ought to spend a few months in my shoes. Then tell me how great the current system is. And I'm one of the lucky ones, in our current system.
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daveraines with an interesting take on my new short novel, Death of a Starship
Andrew Wheeler reviews Finch — A most excellent book I've been meaning to review glowingly.
Longacre Square: 1904 — Shorpy with a photo Times Square, way back when.
Evaporation Ponds, Salar de Atacama, Chile — Another cool photo from NASA's Earth Observatory.
Juan Cole contrasts Bush response to shoe bomber with Obama response to underwear bomber — More to the point, contrasts press and commentariat coverage of same. Your Liberal Media, enabling conservative lunacy for years past and to come.
?otD: Work or play?
1/4/2009 Body movement: 30 minute ride on stationary bike Hours slept: 5.5 This morning's weigh-in: 225.5 Currently reading: Bangkok Tattoo/em> by John Burdett
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One more post about the weekend. calendula_witch's aunt, Susan Dutton, is an artist who lives and works in Italy. She'd arranged the cottage we spend the New Year's weekend in, ( and she also did some artery. )
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calendula_witch and I spent New Year's weekend with her aunt at a cottage out on the coast, right on the Sonoma-Mendocino county line. It rained buckets pretty much the whole time we were there, clearing up just in time for us to leave yesterday morning.
( So we left in the Witchmobile... )
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SFO on a Sunday night, at least in Terminal 3 at the United concourse, is a wee bit understaffed for the passenger load. Everything was moving very slowly, stupidly slowly. The four people in front of me all set off the metal detector with the usual array of coins, belts, cell phones and "huh?"s. When I finally got to the metal detector, I walked through clean, and was promptly waved into the holding pen while "male assist" was called.
I then stood there for five minutes. At least half a dozen women were screened. Several men behind me set off the metal detector, were patted down by the guy who had diverted me and sent on their way. I, who had not set off the metal detector, stood and waited until I finally did something I never do — I backtalked the TSA screener.
I went back out of the pen and asked him why he'd diverted me when I hadn't set off the detector. He said, "Random check." I said, "Then could you please randomly screen me?" He turned away and ignored me. I went back into my pen.
About two minutes later a supervisor came by. The screener told him I'd been in there over five minutes. The supervisor told another screener, who had been standing near me the entire time, to check me. I was, of course, clean, and sent on my way. As I am chronically early to airports, and my flight is delayed anyway, no harm done, but I sure hated watching my stuff through a plexiglass wall while dozens of people filed by, looking it over, and it all stood ignored by the TSA screeners.
I know the front line TSA guys don't make policy, but they ought to have service standards. This wasn't a security issue, it was a staffing issue (presumably) compounded by a communications error.
But what kind of fricking security is it to detain someone with no warnings, and pat-and-wave-on the next raft of guys who set off the detectors?
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I've had a lovely holiday season. Right through Christmas I was at Nuevo Rancho Lake with the_child and my family, most of whom live in the immediate area. Boxing Day the_child and I flew to San Francisco, where we did all kinds of cool stuff with calendula_witch and markferrari. The kiddo flew home last Wednesday, after which calendula_witch and I headed for Sea Ranch to spend time with her aunt, the European-American artist Susan Dutton. A glorious drive back yesterday (watch for a photoblog post later), and then to a lovely party hosted by dinogrl and dave_gallaher. I go home today, see a couple of friends tomorrow, then shelly_rae comes to Nuevo Rancho Lake on Tuesday. calendula_witch comes on Thursday. I've been surrounded by family, love, friendship and holiday spirits galore.
All of that was lovely and fun, and except for a few melancholy moments, and one outburst of hysterical crying in the shower, I've managed not to be dwelling in cancerland for nearly two weeks.
On the way home from the party last night in the Witchmobile, that changed.
I hit the wall.
We were talking about this-and-that, as one does after a party, and the conversation drifted into how the near future will work. Sometimes when I'm stressing about cancer I get crazy in the head and start buying trouble in other parts of our life. "But what if this happens?" "You're going to do that, and it will make me upset." That sort of crap. The relationship calendula_witch and I share is very solid, but it's also very considered. We re-examine it constantly. (Sometimes we joke about having staff meetings, but that really isn't a bad description of the process.) The demands of our lifestyle require such continuous monitoring, but we're also both beneficiaries of long-term therapy, and such shared introspection is a jointly acquired lifetime habit.
All in all, this is a very good thing, but my crazy cancerbrain sometimes runs away with it. Displacement, stress, whatever. I'm hitting the chemo chair in five days, and last night the pleasantly insulating holiday spirit finally burned away like fog beneath the sun's bright-bladed rays. By the time we got back to the Witchnest, I was feeling burned out and depressed.
As calendula_witch pointed out last night, I have a history of severe depression. Her suggestion was that perhaps I have a horror of suffering, of returning to those pain channels carved so long ago on my psyche. That my denials and my anger and my refusals are me dancing at the edge of that dark valley. I don't know if she's precisely right or not, but I do know the suggestion made me angry, which is strongly indicative that she's hit on something important.
Last night I capped two weeks of goodness and quiet calm on the cancer front with an hour or two of anguish and idiocy. calendula_witch was loving and thoughtful and careful, and she got me turned around enough to go to sleep peacefully.
I hate it when this disease turns me into a fool, and it very much did last night. I am profoundly humbled and fortunate to be loved as well as I am, by her, by shelly_rae and markferrari and kenscholes, by my family and friends.
Thank you all.
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| 2010-01-03 07:26 |
| [links] Link salad wants to be called Deacon Blues |
| Public |
| art, audio, books, cool, culture, green, links, personal, podcasts, reviews, science, stories |
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Mary Robinette Kowal is most kind to Green [ Powell's | Amazon | Kindle | Barnes & Noble | Borders ] — An old post which I'd missed the first time around, it popped up in her year in review.
My Interzone story, "Dreams of the White City", is now a podcast —
Artists, thank the automobile — Art guru James Gurney with an interesting connection between the automotive industry and the visual arts.
A Little Decadence — Bad Astronomy pisses on the "when does the decade end" fire.
Exoplanetary thoughts for 2010 — Centauri Dreams on one of my favorite topics.
The Casimir Effect — APOD with a microphotograph illustrating the Casimir Effect (which is explained in the caption).
?otD: Do you want a name when you lose?
1/3/2009 Body movement: n/a (60 minute urban walk forthcoming) Hours slept: 6.5 This morning's weigh-in: 224.5 Currently reading: Bangkok Tattoo by John Burdett
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What calendula_witch said about yesterday. Fun but exhausting. Day Jobbe is wrapping early for the holiday, and we're off to the Mendocino coast soon. May not be back online til Sunday, then back to Portland that evening. A safe and happy New Year's holiday to all, and a healthy and prosperous 2010.
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| 2009-12-31 05:45 |
| [personal] Obligatory year in review post for 2009 |
| Public |
| baby killers, books, cancer, endurance, green, grief, health, kalimpura, madness, mainspring, personal, pinion, publishing, rockefeller, sky, starship, stories, sunspin, writing |
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( My year in review, under cut for f-list mercy )
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