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chimeralhalfmanandcuttingedgetech

Carl Sagan is one of the people I've most admired in my life. The Cosmos series helped instill in me, and so many others, an appreciation for the wonders of science, and an understanding of science as a method for approaching Nature, rather than what schools too often beat down to a list of approved answers to be repeated. Sagan eventually developed a blood cancer, myelodysplastic syndrome, for which he received blood stem cell transplants. In 'Billions and Billions', he muses in one of the essays about how receiving a stem cell transplant from his sister means that for his life afterward, part of his body would be from hers, and genetically female. I now share this life step with him.

If, for some pointless reason, you went back to the earliest entries of this blog, you'd find a few made from the 8th floor BMT unit at LDS Hospital in Utah. That was about six years ago, and in many ways my life since has been focused on not coming back here. But here I am.

In 2008 I was here for relapsed Hodgkins lymphoma, a disease where the first-line standard treatment is usually effective enough, meaning relatively less research was put into second-line treatments. The medically standard next step after a relapse was autologous stem cell transplant (if your own bone marrow is still clear of the disease) or allogeneic stem cell transplant (if you're marrow's not clear or if you've already had an auto). I was here for an auto, and typed some things into this blog.

My Hodgkins is refractory, it doesn't ever go away forever. When I relapsed a year later, the next-line standard treatment was an allogeneic transplant, but I looked at the life survival numbers they had and decided no way. Through my oncologist and clinicaltrials.gov, and with help from my mom who's skilled at researching things, I found some clinical trials for current cutting edge drugs for Hodgkins, and got into one for what's now called Brintuximab (always be SGN35 to me).

That set up a life pattern for the following years. Always a salvage treatment or a clinical trial to try to contain the cancer, maintainig a relatively normal life for many years throug various chemos and some radiation. That lasted until December 2013. My oncologist and I had put one chemo to an end because the last scan showed only mixed results, some shrink some growth. We'd figured to try another chemo for containment, or look what was on the clinical trial horizon, but there was a problem that my blood numbers were falling even without the chemo. I had a bone marrow biopsy and on the 9th they called me with an alarming new development: Leukemia.

Leukemia changes the situation tremendously. Hodgkins I know, I can deal with in various ways (including a few nutritional/herbal things I've come to trust --my standard is if someone with actual medical credentials is researching it somewhere, and I've also had reliable results from Chinese nutritional and herbal medicines). Even if I gave up and did nothing about Hodgkins, it would probably take a year and a half to actually kill me. Leukemia will kill in weeks, or a couple months at most. Now the allogeneic transplant I'd been avoiding seemed the likeliest option.

It turns out I'd made the right choice in avoiding the allo transplant five years ago (and the team leaders here had been subtly encouraging me to avoid it). In recent years, they've developed a new standard of donor transplant using haplo donors --relatives exactly half-matched. Hodgkin's patients do worse than other cancer patients at allogeneic transplants, but haplo transplant seems to be giving Hodgkins history patients good odds. It's still very new, so there aren't long-term results to compare. But the horizon looks hopeful.

It's been a difficult process. I was checked in days after diagnosis, started standard Leukemia induction treatment the 16th of December. After that the expectation was watch the blood numbers and plan for the transplant treatment. It took them awhile to decide exactly how to treat (Hodgkins and Leukemia together make a rare and challenging combination), then to get my health provider to approve. I'm now Day 7 post haplo, and the worst is over for now. I've been in the hospital far too long and hopefully can be out in a couple weeks.

Americanvalues

America was born in Rebellion. America was born On the Verge, where ideas, ethnicities, philosophies, religions, languages, histories and narratives from around the world came together in the cities, salons, pubs, coffeehouses, courts, churches, lyceums, presses and public squares, to mix, intermingle, and radically transform.

In all of the great moral conflicts that have defined American freedom, there have been those who sought justice and greater human dignity for all, and there have been those who defended established hierarchy and social restriction. The struggle between cosmopolitan embrace of all humanity versus the provincial, factional, traditional and powerful was old in our republic's youngest days.

Ending the rule of kings is a fundamentally radical concept. Abolition, free speech, women voting, civil rights, labor rights, freedom of conscience, have nothing traditional or conservative about them. The truly American spirit is Speaking Truth to Power.

Freedom is the freedom of dissent, disruption. Freedom is not merely freeing the businessmen. The untrammeled right of men of wealth to do as they please and influence decisions without concern for democratic participation is not the radical gift of the American experiment, but rather the ancient way of dominion and empire. Freedom is not merely freedom to live a comfortably unexamined life in one's steady cultural tradition, regardless if that culture is Bantu, Persian, Scandinavian, or the much mythologized and over-marketed American "heartland." Freedom obligates one to engage the world, doubt oneself, and see all cultures as sources anyone might draw from to grow and change themselves.

Goodness is not America's essence but its aspiration. No one gets to assume they're the good guys, especially not trying to justify something they would condemn from anyone less good than they. There never was a Shining City on the Hill, and a city presuming itself to be that one is guilty of pride. That City is not yet built and will never be completed.

This is the "liberalism" I learned from the example of many, and is nothing like the Strawman "liberalism" pundits on the right sneer at, nor the counterfeit "liberalism" focus-group technocrats in the Democratic Party might offer, nor the empty "liberalism" the compromised media occasionally name-check when they need to say something about "both sides."

This is America as I know it and love it.

onblogging

James Edward Raggi's blog has a particular geek focus that may or may not interest the half-dozen viewers I get, but he's explained well the nature of blogging in general and the position bloggers find themselves in whether they know it or not.

http://lotfp.blogspot.com/2010/03/little-perspective-on-internet-and.html

checkinginwithanaphorism

The word 'freedom' is robbed of all meaning when it is used to refer to private dominion.

So it turns out getting my computer to hunt down every flac music file in my collection and encode an ogg version of it takes just under four seconds to type, and just over four days to run. It doesn't slow down basic web surfing at all. I used to think typing on the command line was something one tried to get away from in computers.

On something of a whim, Tuesday, I drove up to the capitol and sat in on the hearing for HB 288, to allow cohabitating unmarried adults to become foster and adoptive parents. It got shot down, of course. Whaddaya expect? I didn't speak for the audience participation bit, though maybe I should have. I noticed the speakers from organizations opposing the bill tried to bring in statistics on the allegedly greater volatility of gay relationships. Speakers for the bill generally tried to argue against these numbers, but I think they missed a valuable moral point in doing so.
It actually matters not at all how much more or less likely homosexual couples are to break up, or have abusive relations, or take drugs than heterosexual couples. (The speakers against were actually very vague on just how much more or less.) Suppose tomorrow someone published a clear statistical study showing left-handed people were more likely than right-handed people to suffer from mental illness. Or ethnic Italians more likely than ethnic Albanians to divorce. Or that Mormons were more likely than Baptists to let their kids have too much ice cream and too little exercise. No one would actually believe that therefore these demographic categories should be entirely cut off from adopting children, even if the differences were quite large. The DCFS has a whole vetting process in place specifically to evaluate these things on a per-family basis. (And however effective or ineffective it is, it's likely to be just as effective or ineffective for all demographic groups.) An essential moral principle of America's progressive values is that you don't restrict someone based on their broader demographic category. I regret not saying anything then (not having articulated this paragraph entirely on the fly during the open mic period.) I'll probably rework this into an LTE and a too-little-too late email to the State Representatives on that committee.

In other news, today I've started biking to work again. Had to dial the speed down a bit for my lazy delinquent legs. It's several hours later now and I'm not aching or tired from it. Hopefully I'll get back into some approximation of shape.

assoandsosays

There are roughly two motives in quoting someone. In one you expect the esteem for the person to lend credence to the words. In the other you expect the words to be judged on their own, and the attribution is merely giving credit where credit is due --and perhaps to affect the esteem for the person.
The first approach is authoritarian. The second is the ideal of rational discourse.

gettin'elected

It occurs to me that if one is interested in the U.S. presidential elections, their major issues, and likely results, then the least relevant information is what the candidates themselves say. Look to the wisdom of the crowd, such as it is. Hear what people say about what people say about what people say about what the candidates say. Examine the textures of information and try to take the derivative of it all.

I don't think it's yet time to run for the hills, move to Sweden, sign up for Re-Ned-ucation, or wage bloody revolution.

justnicely.youknow

Oy, you know that hyperalert state where you're somewhat drunk and you focus and rebalance your sensory systems 'cause you know you can't quite trust your automatics, and then when you get home you can relax and so then the alcohol effects really come to your conscious attention? Yeah, me too.

Reggae still annoys me on radio, but it makes pretty decent bar live music.

Note to all musicians travelling to Utah: bring a fair sound artist along, 'cause you can't trust the club's sound guy to know shit around here.

readin'ritin'ncombinatorics

I am constrained by conventional language in trying to write.
Any idea, inspired by what I've seen or done or read or a conversation I've had, becomes a cascade of parallel inter-referencing verbal and nonverbal thoughts. Often several of these lead to linear things I'd like to say or write out, but the feedback continues and I often find I've gone through an inner turn of phrase that may never recur. Sometimes I can bring them back. And sometimes I sit to write them down and find the perfect words aren't there anymore.

Thinking is like an abstracted drug.

Yeah, it's just another blogosphere-clogging post from a would-be writer on the topic of writer's block. Mostly. Sort of.

thoughtovthemoment

No task is beneath anyone. Subordination is beneath everyone.

burstinginair

Aerial fireworks are very pretty. But there's a part of their beauty I found myself dwelling on in particular at Friday's show. After the carefully correographed explosion, the fading sparks drift on the air currents, curling around one another. The neat pattern loses its sphere or ring or whatever shape it was designed to have, and a new ephemeral pattern falls out and fades. It's the part of the burst that's not controlled, and I found it oddly fascinating.

restaurantbitching

Restored from the brink, where lo these blogging fields have lain fallow for many weeks...

So nothing really new today, just some discourteous and probably unfair thoughts that recur to me sometimes at my job.

*Waiting at the restaurant is your just punishment for having so little diversity in your lifestyle that you actually get hungry at the same time as your neighbors.

*In a corollary, you'll find you're not the only ones who decided to wait for the end of the most popular television shows in the country to get dinner.

*If you hang up and call back twenty minutes later, that's not the same thing as being "on hold for twenty minutes," no matter how angrily you say it.

*If you've got your whole social circle together, and decide to call for take out, the one person in the group who actually suggested the restaurant and has been there before is probably the best person to make the call. The preteen child of the branch of the family who are visiting from out of state and who also is nervous talking to strangers on the phone is probably not the best person to make the call.

Really, the main point of this post is to communicate to the handful of people checking in that, yes, I'll be writing this thing again.

petheadache

So, if your beloved dog or cat had a splitting headache, how could you ever know? How could you ever be in a position to do anything about it? "Hey, Fido, need an aspirin?"

Just one of those little things that occasionally pops into my head. Although I'm pretty sure Milky cat isn't suffering any headache right now, given the contented demeanor.

gettinurgun

Current Listening: Ihsahn, The Adversary

So as I was riding home from the hospital yesterday (cancer-free at last, with hope), I noted the billboards about the upcoming Crossroads of the West gun show on April 19-20. Of course they have a gun show on April 19, who wouldn't? Ask any armchair-patriot pseudo-revolutionary and he'll tell you the great importance of that date, because an average of one Patriot-Movement-endorsed historical event per century happened then (Boston Tea Party, Waco, Ruby Ridge). So holding a gun show then helps pull in extra buyers and sellers and makes a bit more money.

So why mention Ihsahn, my favorite-of-the-moment musician? Somehow the themes of the album merge with my political thoughts and got me to crawl over to the computer and post this. I believe in the union of seeming opposites and veneration of rebellion that underlies post-satanic thought (like many other things, satanism is useless except for the kind of person you can become once you grow out of it; bye-bye high school.)

What's this to do with politics? I've long felt that there really is no conflict between libertarianism and socialism. The illusion of conflict arises when libertarians use the language of conservatism (Patriot Movement), or socialists use the language of totalitarianism (Soviet communism). Capitalist versus communist may have been the driving conflict of the mid- to late-20th century, but look around, all the smart countries have mixed economies (including the U.S.) Only fanatical purists bitch about the liberalized market economies or the nefariousness of social programs.

In the last couple decades, we've seen the rise of the information economy and the open-source movement. Manufacturing costs have decreased, and increasingly information has become the primary component of value. In time, much of manufacturing could become a home industry, and information will be the only thing valued, and that will be highly structured by the rising open-source movement. The scarcities that underlie 20th century economics will not be any more relevant in the late 21st and 22nd centuries than those of 16th century economics are now, new economic issues will breed new political problems and new approaches to solutions, and capitalism and communism will be left as museum pieces. The asymptotic result of all this is a post-scarcity civilization, though that is about equal to a post-singularity civilization in its probability of being entirely wishful thinking.

I'm writing this from a semi-stable region of consciousness between adequate pain control and drug-induced fogginess.

It's been two days since my stem cell infusion, since Day 0. A few of the nurses and techs said something interesting that day, "happy birthday."
It's oddly appropriate if you think about it.
I have had a life-threatening illness. In order to treat it, we have had to resort to a heavy-handed treatment, a treatment that will kill you. The stem cell transplant enables life to renew, enables health to be restored at all.

When this is done, I will have undergone technological death and resurrection; born again by the power of science.

seaunderthe

Dolphin rescues beached whales.

The Mythbusters examined stories of dolphins fending off sharks from attacking swimmers, and found that sharks actually avoided the bait they left in the water when their mock-up dolphin was nearby. There's speculation either that dolphins really hate sharks, or they really feel some compassion for the sharks' victims.

Scientific American had an article on bluefin tuna possibly going extinct. Given the hype of dolphins caught in tuna nets, I quipped to my coworker that maybe the dolphins were responsible out of self-defense. Then I realized that while dolphins are certainly smart enough to pull off something like that, they probably aren't psychotic enough to do it. Conceiving that one took this human brain here.

Maybe someday we can convince the dolphins we're as civilized as they are.

greenliberstrat

So it's a lazy Saturday and I've been watching EcoTech on the science channel. It's full of really interesting materials and devices being developed to improve energy efficiency and reduce pollution. It showcases innovations in building design, solar and wind power, even paint that absorbs toxic nitrous oxide and breaks it into harmless nitrogen and oxygen. The show points out that environmentalism really is good business policy because saving energy saves money.
I remember when running with the Libertarian party there was some talk and some articles about free market environmentalism, but one was left with the impression that the people talking about it were just developing talking points for candidate speeches, and didn't really care about environmental issues. The people featured on EcoTech are motivated by real care, and what's more they practice the innovative entrepreneurialism LPers claim to praise so much.
But hey, why be part of the solution when you can bitch about how people aren't conforming to the divinely guided perfected wisdom of the Founding Fathers, and scaring yourself silly with the word "socialism"?

cravemetaliodine

Nothing will give you a hankering for chips, cookies, and cola quite like when the medics tell you to restrict your carbs in preparation for a medical test. It's a specific form of the Law of the Forbidden: that which is prohibited is inherently more attractive.

Ah well. I got to talking metal music with Ben the rad tech. We had Baroness and Black Sabbath in common, and shared enthusiastic introductions to Witchcraft, Pig Destroyer, and tech-death-jazz-fusion greats Atheist. Too bad iodine always makes me feel sick, at least for the first 35 seconds.

apheroldschool

I am at this moment connected to a machine that is drawing my blood and separating bone marrow stem cells for later use. The folks here can tweak the machine to get at various blood components as needed, This isn't even the leading edge, it's a refinement of a technique, using the equipment in new ways over the decades.