Jay Lake: Writer

[cancer] Failing downward

Yesterday I failed my blood test. My neutrophils were down to about 400, which is somewhere in “Die, you insolent dog” territory for immune system failure. So no chemo for me this weekend. Also, for the next few days I am severely immunocompromised. Avoid crowds, avoid or carefully wash fresh fruits and vegetables, avoid sick people, wash my hands a lot, and so forth.

Basically, I have to sit home alone and eat rice and act like I am an agoraphobe with OCD.

It’s not like I had a lot of plans for the weekend, what with the chemo and all. Except no more chemo this weekend. It’s been rolled back to next week, pending my neutrophils bouncing back.

The root of this problem is that we skipped the Neulasta on the last chemo go-round. My blood counts had held up well, and we were trying for an every other session Neulasta dose. Clearly we were wrong.

There are some minor upsides to this. I get another week without chemo, which means I’ll be a little stronger and more healthy going into the next chemo round.

But there’s also some issues. This causes problems for my caregivers and their scheduling. This causes my end date to move back to the weekend of December 9th instead of December 2nd. This causes minor issues with work scheduling.

Finally, this underscores what I was talking about yesterday. I have no control over this disease and its treatment processes. I am at the mercy of the disruptions to my body. I spent much of yesterday being very frustrated and irritated. I am less so now, but I remain deeply discouraged.

Tags: Cancer, health, Personal

Posted: 5:30 am Fri September 23 2011 | Comments(2) |

[photos] Your Friday moment of zen

Your Friday moment of zen.

National Park Service work truck, Alcatraz. © 2007, 2011, 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.

Tags: Photos, zen

Posted: 5:27 am Fri September 23 2011 | Comments(0) |

[links] Link salad is hermetically sealed for its own protection

Young Bonobo Shows Signs of Autism

Brain Imaging Reveals Moving Images — Researchers develop an fMRI-based model to reconstruct moving images that people are seeing. Ok, now we’re getting somewhere. Intensely cool and a bit spooky.

How Automation Leads to More Aviation Accidents

The $300m cable that will save traders milliseconds — Wow. (Via David Goldman.)

Roll over Einstein: Law of physics challenged — Speed of light broken? Or experimental error? The Bad Astronomer critiques.

Suicide by Roller Coaster

The Needle and the Damage Done — Some legal analysis on the execution of Troy Davis. Sobering. Ta-Nehisi Coates with an account of events.

Using plastic to pay Anthem bill? Prepare to lose your coverage — Notice of cancellation was a shock to one policyholder who had been making automatic payments with her credit card. It’s just one case involving a policy switch at the health insurer. Yep. Best healthcare system in the world. No need for reform here. Move along, citizen.

Breaking News: The Civil War Is Over — States’ rights and Federal HCR. I liked this thought: I can describe the legal arguments and the judicial conclusions, but on a fundamental level, I just don’t get the attack on the federal law. I don’t understand people who voluntarily, without claiming poverty, let their children go uninsured. I don’t understand the moral compass of the owner of the fancy car I saw the other day that sported the bumper sticker: “Repeal Obamacare.” I suppose that the self-satisfied and oh-so-secure car owner never met anyone like the healthy 27-year-old man profiled the other day in USA Today who was denied insurance in the private market because his doctor four years ago had ordered a particular heart-monitoring test – which found nothing wrong with his heart. I do know such people. So do you.

Bill O’Reilly’s Civil War — The Fox News host thinks America is in dire straits—and what it needs is a history lesson. In this week’s Newsweek, he tells Peter J. Boyer about his new book and why he likes Obama. I never liked O’Reilly’s politics, but ever since the “shut up” incident, I’ve had no respect for him in any capacity. (Not to mention the whole falafel thing, from this conservative guardian of America’s moral rectitude.)

Obama and Perry, geese and ganders — This in turn reminds me of the conservative outrage over the photo of Obama with his feet on the desk of the Oval office, as compared to their dead silence over a virtually identical photo of Bush43. What possible difference could there be? I cannot even begin to imagine.

FACT CHECK: Slippery assertions in GOP debate — I especially like this one: BACHMANN: “President Obama has the lowest public approval ratings of any president in modern time.” THE FACTS: That’s true, if you leave out Harry Truman, Richard Nixon, George W. Bush, Jimmy Carter, George H.W. Bush, Lyndon Johnson, Ronald Reagan, Bill Clinton and Gerald Ford. All of them at some point in their terms dipped lower than Obama’s low point of 38 percent job approval, according to Gallup’s comparison. Of course, GOP voters everywhere will believe her over the facts. It’s what conservatives have been taught to do by the “liberal media” meme — to assume any facts they’re presented contrary to their worldview with have been cooked.

?otD: How’s your immune system today?

9/23/2011
Writing time yesterday: 0.0 hours (goofing off/post-novel ennui)
Body movement: 30 minute stationary bike ride
Hours slept: 7.5 hours (fitful)
Weight: 221.6
Currently reading: Surface Detail by Iain M. Banks

Tags: Cool, healthcare, law, Links, media, Personal, Politics, race, Science, Tech, Travel, weird

Posted: 5:26 am Fri September 23 2011 | Comments(0) |

[process] Ideas and their discontents

In case you haven’t read it, go read John Scalzi’s post from yesterday on ideas. It’s okay, I’ll still be here when you get back.

Ideas. I swear to God, they are the easiest part of this business. They are for me, anyway, and for most working writers I’ve ever talked to about it. Why people think otherwise is beyond me. (Well, not really. After all, I am a highly trained professional imagination user, so by the Law of the Tool, ideas would of course seem easy to me.)

Except, like everything else, the devil is in the details.

What constitutes an idea?

Is it the general statement? “These two kids fall in love, but their families hate each other.”

Is it the high concept statement? “Gang wars. Forbidden love. Two kids whose dads are the biggest crime bosses in the city pursue their infatuation to a disastrous end.”

Is the it synopsis? [ Romeo and Juliet at Wikipedia ]

Or the themes? Or the outline? Or… Or… Or…

I for one am quite capable of writing a short story in service of a single image that pops into my head. I don’t need more than that to drive me. My novella “Our Lady of American Sorrows” derived completely from a dream about some priests riding in the back of a military truck through a small, Latin American town.

But for other writers, such an image doesn’t count as an idea unless they can see more. Perhaps the through line, the resolution, or the character arc. That very much depends on the writer. So while I could probably writer an entire novel from nothing more than the idea of a werewolf with achondroplastic dwarfism, another writer would need a great deal more/different to qualify that idea.

For me, notions, concept and ideas are all essentially the same thing — creative stew. For others, more flesh or structure is required.

What’s an idea to you? How much do you need on the page or in the brain before you can turn it into a story or a novel?

Tags: Process, Writing

Posted: 5:42 am Thu September 22 2011 | Comments(2) |

[cancer] The gentle subtlety of a sledgehammer to the skull

Mostly these days I just trundle along. The mortal terror and high anxiety I’ve been through during past phases of my cancer journey isn’t a daily feature of my life lately. I don’t need to pull over the car for a crying jag, I don’t have panic attacks. As I’ve mentioned before, the human mind’s capacity to routinize anything is truly astonishing.

Still, sometimes events or the comments of other people pull me back into a difficult headspace.

This isn’t my news to share in any detail, but a friend who has a very similar cancer situation to mine was just given a diagnosis that is probably terminal. Specifically, a new round of metastases in an inoperable location. This, of course, could happen to me at any time. Precisely so. It’s what killed another friend of mine last spring, also with a very similar cancer situation to mine. I’ve been lucky that my metastases so far have been discrete, single tumors in easily accessible locations (lower lobe of left lung and right lobe of liver). All I need is a tumor in the liver stem and I’ll be doing short term end-of-life planning.

And there’s absolutely nothing I can do to control or prevent this.

Yesterday, Mother of the Child and I met with the_child‘s new therapist that she’ll start seeing next week. She’s having typical teen transition issues, plus working through her identity as a transracial adoptee, plus dealing with my cancer. She needs this. MotC and I spent an hour going through the_child‘s life history, our marital history, our current living arrangements, my health issues, our assessment of our daughter’s life issues and so forth. The therapist, charmingly blunt, finally said, “It really sounds like you’ve done everything right. You’ve got good parenting, good living arrangements, she’s in the best school she can possibly be in for her needs.” Then she looked at me with my 30% five-year survival rate and said, “But if you die in the next few years, all that good work goes swirling down the drain.”

That’s telling it like it is. And there’s absolutely nothing I can do to control or prevent this. That five-year timeline for survival? That’s how long it will take her to make it through high school.

At this point, other than the cancer, I border on disgustingly healthy. For a chemo patient, I am disgustingly healthy. I can do a lot to take care of myself to improve my tolerance of and response to surgeries, chemo and (if needed at some point) radiotherapy. I can do a lot to take care of myself to be available to my daughter, to have the energy to write my books, to be connected to family and friends, and to live in the world.

But my ability to control what actually happens next in my cancer?

Spitting in the wind.

As I said to my therapist yesterday, “Hey, I could take up smoking! It doesn’t matter now.”

We are all mortal. Everyone dies. But my chess match with death is in a very different state that most of my peers and age cohort. Most days I just shrug and move on. Yesterday, the fact that I can see the end game a few moves away, and the absolute lack of control I have over when that end game takes place, was hammered home with all the gentle subtlety of a sledgehammer to the skull of a slaughterhouse pig.

Sorry, no quiet wisdom or life lessons in this one. Just me thinking aloud about the fundamental brutality of living with cancer.

Tags: Cancer, Child, health, Personal

Posted: 5:39 am Thu September 22 2011 | Comments(1) |

[photos] Your Thursday moment of zen

Your Thursday moment of zen.

Frank Wu in San Francisco. © 2007, 2011, 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.

Tags: Photos, zen

Posted: 5:22 am Thu September 22 2011 | Comments(0) |

[links] Link salad chews its way into Thursday

Possible life in the Martian trenches? — Oooh.

Dr. Smith, Warlord of Mars

Software Testing Startup’s Autistic Workforce Seeks to Change Business Culture

Early longevity gene findings disputed — A trans-Atlantic dispute has erupted between two camps of researchers pursuing a gene that could lead to drugs that enhance longevity.

Windows 8 and the Reign of the Finger

The cold, cold case of Jack the Ripper — A retired homicide detective is trying to force Scotland Yard to release uncensored versions of files that might offer fresh leads on the identity of Britain’s most notorious serial killer.

The Apple effect: How Steve Jobs & Co. won over the world

Two graphs illustrating the relationship between bigotry and stupidity — Slacktivist Fred Clark skewers anti-Islamicism.

‘Nobody in this country got rich on his own’ — Elizabeth Warren speaks straight to all the Galtians and Libertarians out there. I want this rhetoric in the White House.

Sonny Bono’s Brother, Cui — This is what it means to be a conservative: you think it’s obvious that 98% of climate scientists are falsifying data and/or supporting transparently bogus theories because they want to get their greedy little hands on some of that sweet, sweet grant money, while at the same time recognizing no financial incentive whatsoever on the part of oil company-funded “skeptics”—much less the oil companies themselves.

Ron Paul Says Aide Who Died With $400k Medical Bill Didn’t Need Government Help — Pretty much says it all about the conservative mindset, right there. I don’t know how you guys sleep at night, frankly.

The Jimmy Buffet Rule — If you ask the bottom 98 percent to sacrifice, that’s a prudent fiscal policy. If you ask the top 2 percent to sacrifice, that’s class warfare.

?otD: Got teeth?

9/22/2011
Writing time yesterday: 0.0 hours (too many medical appointments
Body movement: 30 minute stationary bike ride
Hours slept: 7.25 hours (solid!)
Weight: 220.2
Currently reading: Matter by Iain M. Banks

Tags: business, crime, Funny, health, Links, Mars, Personal, Politics, Religion, Science, Tech, weird

Posted: 5:20 am Thu September 22 2011 | Comments(0) |

[writing] Kalimpura

Despite all my health issues of the past week, my writing mind finally overcame my body’s chaff to lay down 2.5 hours on the book yesterday. Several significant inserted scenes. A detailed read-through of the troublesome portion of the middle act with corrections made. A walk through of every single edit swatting second-order typos, word echoes and other newly-introduced errors.

I think I’m done with this book. Going to let it steep for a few days before I send it in. Just because.

God I love being an author.

Tags: Books, Kalimpura, Process, Writing

Posted: 5:31 am Wed September 21 2011 | Comments(2) |

[cancer] Following up on recent events, and more on costs

After a good night’s sleep for the first time in a week, I am happy to report that I saw my oncologist yesterday about the recent GI issues. As the day had gone by, my lower GI violence was abated in favor of a sullen ache, so we weren’t doing intervention so much as discussion. They did pull a full set of labs on me, and everything was, in her word’s, excellent. She commented on how healthy I was, beyond the obvious.

Among other things, this indicates that I was not suffering from a GI infection these past days.

I explained how things had gone since last Thursday night, and how desperate I was to have better control if they recurred. We discussed FOLFIRI, my recent diet, and medications. The oncologist was of the opinion that the basic problem is just life on FOLFIRI, but that I may have made it worse by consuming a lot of meat last week. (I was craving meat protein horrendously, so an unusually high percentage of my food intake had been meat.) I made a passing comment about loving cured meats and the link between nitrites and colon cancer. She pointed out that horse had left the barn a long time ago and I might as well enjoy bacon in moderation.

In the end, she prescribed a gas reducer, endorsed the use of kaopectate or other OTCs if I wished, and recommended papaya enzymes as a dietary supplement. She also asked me to eat more yogurt, bananas and pineapple, and to keep the meat content of my diet relatively low.

All to the better.

I was also forcibly reminded of the financial costs of this disease. Due to an unusual confluence of appointments, even with my fairly good insurance, my out of pocket costs for visit copays and pharmaceutical copays this week alone is over $200. That of course doesn’t count against my long-since-met annual out of pocket limitations on my insurance plan.

Think about that. I have done everything right. I have the privilege of being white, male and having a short English name. I have an excellent education, quite a good job, good insurance. And yet cancer is costing me as much as $200 per week in direct, hard costs. How would that hit your household budget?

This actually jibes with my overall estimate of cancer costing me about $10,000 per year. Most of that is healthcare direct, hard costs, a lot of which is front-loaded in the out-of-pocket limitations, but it’s also things like higher energy bills for keeping my house warmer than I would if I were not ill, extra transit costs for trips back and forth to medical appointments, and so on.

So who the hell can afford to be this sick? This eats up a significant percentage of my takehome pay. Even as someone relatively affluent who has done everything right by the American rules, cancer is slowly bankrupting me.

My friends in Europe and Australia and New Zealand aren’t forced to take unpaid leave or burn their vacation to be ill, and they aren’t forced to spend every spare dollar and more to meet the costs not covered by insurance. And their healthcare outcomes are as good or better than ours.

Tell me again why we don’t need a better system of healthcare finance?

Tell me again why ours is the best in the world?

This sucks in so many ways.

Tags: Cancer, health, Personal, Politics

Posted: 5:29 am Wed September 21 2011 | Comments(7) |

[photos] Your Wednesday moment of zen

Your Wednesday moment of zen.

Daniel Spector in San Francisco. © 2007, 2011, 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.

Tags: Photos, zen

Posted: 5:23 am Wed September 21 2011 | Comments(0) |