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[cancer|personal] The panics go on

So there was the recent issue with blood in my stool. Which seems to be innocuous enough, but still scared me into flashbacks.

Also, I’ve lost about six pounds since returning from New Zealand. I’m a big guy, and six pounds isn’t much, but it’s a mildly puzzling trend. In the past week, my appetite has also dropped close to nil. (This postdates the beginning of the slide in my weight, so the obvious causal connection does not apply.) The combination of these two things corresponds to the description of what I could expect at the beginning of my terminal decline. Both Lisa Costello and I have very much been fearing that the Regorafenib was failing. The fact that my body continues to adapt to this drug only reinforces that fear — for some chemo drugs, the intensity of side effects reflects the efficacy of the drug’s action. High side effects, strong drug action. Low side effects, weak drug action.

Yeah, well.

Given that we have a scan next week, we’re also wrestling with scanxiety. Lezli Robyn visiting is a fun distraction, but there’s a big coil of mortal fear and dread of death swirling close to the surface. Which makes everything else hard to cope with. Especially fears such as the ones about the change in my metabolism and the possible loss of the drug effectiveness. Prior to the last scan in July, Lisa and I were pretty much at each other’s throats with fear and stress, which is so not how our relationship works.

Then yesterday I realized that my appetite loss coincided with a recent increase in my Trazadone dose. A little quick Googling showed that there is a link between Trazadone use and appetite suppression. Which, while annoying, is orders of magnitude less scary than assuming I was hitting the skids with the cancer.

When the current drug fails, as it inevitably will, I’m back to having six to nine months to live. The countdown is on hold right now through the good offices of Regorafenib. But panics like the one we both had this week are emblematic of how tenuous my grip on health and life itself is. And next week’s scan, like all scans, is an opportunity for me to play Russian Roulette with my cancer.

Sometimes the fear consumes us all.

[travel|photos] New Zealand travelog recap – Ruakuri Cave and Waitomo Glowworm Caves

On August 13th, we drove from Hamilton to Waitomo, then on to Auckland.

First we went to Ruakuri Cave. Underground tour took about two hours, and I did it in a wheelchair propelled by the indefatigable [info]danjite. It was a peculiar thing, wonderful but also odd. Technically the cave was wheelchair accessible, but in practice that meant that the wheels were sometimes scraping limestone on both sides.

Then we visited the Glowworm Caves, which is a boat trip underground. Also cool and strange but difficult to photograph.

We did our best.

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[travel|photos] New Zealand travelog recap – Hobbiton

On August 12th, we drove from Rotorua to Hamilton. Along the way we stopped at Matamata, NZ to visit Hobbiton.

On rebuilding the old Lord of the Rings sets for shooting The Hobbit, New Line Cinema had them created in durable materials, and they remain behind fully dressed for the tours. It was a fascinating walk through the movie.

So we got a tour…

First, the visitor’s center in Matamata.

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Then the visitor’s center at the site. We drove there, and took a bus onward.

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[travel|photos] New Zealand travelog recap – Waiotapu geothermal park and Huka Falls

On August 11th, still in Rotorua, we went back out to Waiotapu to see the geothermal park. I mostly experienced this from a wheelchair, due to my mobility issues, in a notably wheelchair-unfriendly environment. [info]danjite is a true hero for pushing, pulling, grunting and sweating to get me through. After the park, we headed over to Huka Falls for some shots, then home again to our hotel in Rotorua,

The geothermal park is very much like Yellowstone — a major hotspot over a very large volcanic formation, where the ground occasionally just opens up in fissures of boiling mud and steam. This lends a certain je ne sais quoi to wandering about the place.

First we visited the Lady Knox geyser. The story of how this was discovered is fairly hilarious, at least as the guide recounted it to us.

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[personal|photos] Yesterday was weird

So, yesterday was weird. I had an unexpected burst of energy and focus in the morning, so I did some housecleaning and arranging of stuff. This resulted in significant decluttering, much to the delight of Lisa Costello when she returned from her brunch date. [info]the_child then did some needed furniture moving.

My friend AC came over, and we talked writing for a while, then she, Lisa and I went to lunch. So far so good.

After that, it got a little weird.

Lisa and I tooled over to the Hawthorne district to get me a haircut. I’m just shaggy enough to need it, even though things are ridiculously short. Plus she’d never met John, my crossbow-toting stylist. That was a fine time, and my hair was much improved.

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On returning to the Genre car, we found that the fig tree we’d parked under with the top down had dive-bombed the interior with a rotting fig. It looked like someone had vomited all over the back seat. In the process of dealing with this, I got fig poo all over my cane. I need to go to the auto detail place tomorrow and get the crusted fig poo washed out of the carpet and seats.

We then hied over to Portland Saturday Market to see artist Beverly Toyu. Ellen Eades had given me a gift certificate for a life mask to be made by Beverly. I sat for the making of the facial mold with plaster of Paris, which was a more than passing strange experience. Very intimate, very centering, and rather reminiscent of being laid out as if for my own funeral.

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Plus the aftermath was pretty funny.

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I don’t recommend this process to anyone who’s claustrophobic or has issues with having their face obscured or pinned close. Otherwise, it’s damned cool experience.

Back at the Genre car, we returned to Hawthorne to buy cheese and bread at Pastaworks. On returning to where we parked, we discovered a flat tire. It was not dead flat, so I pulled around the corner to a side street. Being no longer capable of changing my tire, I of course called my stylist. Being a Hero of the Revolution, he walked the three blocks from his salon and changed my tire for me.

We eventually got to chez Team E— for dinner, only to discover I was supposed to have brought groceries which I had utterly failed to procure. This resulted in dinner at The Observatory (mmm, oregano fry bread), before we finally went home.

Team E— did have some marvelous peppers and whatnot at their house.

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So, other than the exploding figs, plaster of Paris up my nose, and the flat tire, it was a pretty good day. Today I have not previously planned stops at the tire place and the auto detail place.

Ah, life. She is for living. Every day I wake up alive is a good day, but figs and all, yesterday was a better day.


Photos and videos © 2013, Joseph E. Lake, Jr. and Lisa Costello.

Creative Commons License

This work by Joseph E. Lake, Jr. and Lisa Costello is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.

[cancer|religion] Talking about God with a faith holding friend

My good friend [info]daveraines, a UMC pastor, has another post in his Jay Lake, Cancer, and God series. I read his post, and saw it as an unfinished interview. I asked Dave if he’d mind me responding. He said, “I would love for you to respond to this!”

So, here we are. I respond to each of his sections below.

Empirical vs. Mythical truth

Dave captured my point of view on this pretty well. I would make a small correction of “Mythical” to “Mythic”, mostly because of Dave himself pointing out to me that “mythical” is a specific kind of dismissive, while “mythic” is descriptive of a certain kind of thought process outside the linear, objective structures of the Apollonian perspective.

How Those Christians Behave

Again, Dave captured my point of view pretty well here. I have a lot more to say on this topic than his encapsulation. I will add one thing now: I have what evangelists call a “pain story” about the enormous hurt and damage that American Christianity caused me and my family back in the 1990s. Mother of the Child was pregnant (this was about 1994). The fetus died at 14 weeks. Her body would not spontaneously miscarry, so our doctor scheduled a D&C (which is normally an abortion procedure) for 18 weeks. Thanks to protests and pressure from Christian protestors, almost all the hospitals in Austin, TX had stopped allowing D&C procedures to be performed in their operating rooms for any reason.

It was Bible-believing Christians who would have forced my wife to carry a nonviable fetus indefinitely. There is not enough of God’s love in the world to justify the misery they wanted to inflict on my family for the sake of their narrow minded beliefs. There is nothing moral or ethical about opposition to abortion when it includes this kind of profound cruelty.

That experience hardened my existing political and cultural opposition to the religious extremism of the public face of American Christianity from a sort of generic liberal-progressive discomfort to a deeply personal hatred which has never guttered out.

God’s Wounds?

This is the section where Dave said the least. I’ll quote him in full:

I must label this as speculation. Sometimes I catch a glimpse of some kind of personal struggle between Jay and God, or perhaps with the church. The first thing he ever said to me (upon finding out I am a pastor) was something like, “Many of my stories work out my struggle with the god I don’t believe in.”

I was raised churched early in life, mostly under the influence of my very strict grandfather. He was a devout member of the Disciples of Christ who slightly after that point in my life earned a Doctorate of Divinity from Texas Christian University and was preacher for the remainder of his working life. (Having previously been a dentist, a colonel in the army, a land developer, a retail store owner, a black market meat smuggler, an armed strike breaker, and quite a few other things.) I was a good little Bible student, earning all kinds of awards.

Then I actually read the story of Passover and the Angel of Death with some care.

4 And Moses said, Thus saith the Lord, About midnight will I go out into the midst of Egypt:

5 And all the firstborn in the land of Egypt shall die, from the first born of Pharaoh that sitteth upon his throne, even unto the firstborn of the maidservant that is behind the mill; and all the firstborn of beasts.

6 And there shall be a great cry throughout all the land of Egypt, such as there was none like it, nor shall be like it any more.

    — Exodus 11:4-6 (KJV)

Even at age five or so, I could not understand how a God who loved his creation could kill all the firstborn children of Egypt. How were they to blame for the misdeeds of Pharaoh? What would they have done. Herod’s Slaughter of the Innocents had nothing on what the Lord God Almighty did to those poor children whose only crime was to be sleeping in the wrong house.

That was the beginning of my lifelong dispute with God. My teen aged and adult observations of the behavior of His followers in Christian America have only confirmed that the God of my fathers is a petty, mean spirited tyrant who reduces his followers to cruelty and intellectual dishonesty in the name of faith. The same God who killed thousands of innocent children just to make a political point, something that was obviously immoral even to my five year old self. And yet, we celebrate this as a miracle?

It is Christians like Dave Raines, Bryan Thomas Schmidt, John R. White and Fred Clark who remind me that I am wrong about this. My argument is with God, not His followers. As Dave quoted me, the God I don’t believe in.

There is absolutely no proof of God in the world. The Bible no more proves His existence than comic books prove the existence of Spiderman. I’m an empirical guy (Dave’s first point), and I see no empirical evidence. Nonetheless, God plays a very powerful role in the world precisely because so many people do believe (Dave’s second point), and so it is this God-by-implication that I am really arguing with.

As for cancer, well. I can neither blame God nor Satan, as neither of them exist in any form meaningful enough to have an effect on my health. But my own mythic truths are powerful and deep, and they have been shaped by the Christian narrative.

So I argue as I not so slowly die.

[personal] Digging out from under Worldcon

Yesterday we laid low, mostly. A high school friend whom I have not seen since the late 1980s came to visit with her partner, so that was a nice lunch at Pacific Pie Company then an afternoon’s conversation. Otherwise it was peace and quiet around Nuevo Rancho Lake.

Today I have a medical appointment, lunch with Dad, and another visiting friend this afternoon. Over the next few days I’ll be digging out from under the accumulated paper and electronic correspondence, including another series of financial and legal issues connected to the ongoing estate planning efforts. Hopefully in the next day or two regular blogging will resume, and I can continue posting the New Zealand photo sets, plus the San Diego Comic Con photo sets.

Do good, be well.

[conventions|travel] Home from Worldcon

Lisa Costello and I are home from Worldcon as of late yesterday evening. ([info]the_child and her mother arrive late this coming evening.) Our flights back had some mild logistical hassles, but both legs also included some epic skywatching which more than made up for that. The San Antonio to Dallas flight went through cloud canyons glowing with later afternoon light which were some of the prettiest I have ever seen. We flew between towering anvil clouds, saw thunderheads marching to the horizon, and looked down on the ephemeral kingdoms of the rain. I even spotted a rainbow among the clouds.

I attempted to take photos from the airplane window, but as usual, those things don’t work out very well.

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Near the end of the Dallas to Portland flight, somewhere over eastern Oregon, we watched a distant thunderstorm in the darkness. The starry night glowed above the lightning like God’s spilled jewelbox, and a few orange-tinged towns slept down below, as the cloud banks glowed and flashed and contested among themselves.

The convention was a lot of fun, even within my current mobility and fatigue limitations. I’ve posted about that some, but here’s a few more things, including a wonderful post-Hugo photo of me, Mur Lafferty and [info]the_child by James J. Seals.

Jay Lake, Mur Lafferty and Bronwyn Lake at the Hugos
Photo © 2013 James J. Seals, all rights reserved. Reproduced with permission.

Also, in no particular order of chronology or significance:

  • I did a television interview, though I have no idea when or if it will be broadcast
  • Being thoroughly charmed by Cady Coleman, astronaut, scientist and musician
  • It was great good fun bringing my daughter on stage, and watching her navigate the weekend in general as a young woman of character
  • I am still emotional about the impromptu tribute to me led by Paul Cornell from the stage
  • All my wonderful friends and colleagues, some of whom I saw for moments, and some of whom I spent serious quality time with
  • Some damned fine food and some damned mediocre food
  • The exhibits covering the Campbell Award and my cancer
  • My biggest autographing line ever
  • Being nominated for a Hugo, with that means from readers, friends and fans; and having the privilege of watching Brandon Sanderson take my category

There’s more, lots more, but I’m still a bit muddle headed from the trip. If I saw you there, I’m glad. If I missed you there, I’m sorry. Thank you everyone.


Cloud photos © 2013, Joseph E. Lake, Jr.

Creative Commons License

This work by Joseph E. Lake, Jr. is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.

[conventions] Still at Lonestarcon 3

Lisa Costello and I are still at Worldcon. [info]the_child and her mother arrived last night. Also, I saw my aunt and uncle and cousin Niki Lake yesterday for my cousin’s birthday. And been having fun hanging out with friends, especially Lezli Robyn. Yesterday she’d lost her voice, so I did her reading for her at her book launch.

Today, panels on the Lakeside movie and cancer, then Hugo rehearsals, then Hugo madness. Tomorrow afternoon we go home.