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[cancer|dreams] The state of the Jay

Last night, thanks in part to ongoing GI disruption (including serial outbreaks of flatulence that sounded like the Trumps of Doom a’blowing) I slept pretty fitfully. Lorazepam can only do so much, after all. This led to dreams, as such things do. It’s all fragments now, but among other things…

A comic book dream (in six-panel pages with color inking and hand lettering) about Salman Rushdie in the 22nd century, on extended geriatric life support, discussing his experiences in the 20th and 21st centuries. It looked like it was drawn by the late Moebius and read like it was written by Jeff VanderMeer on a cough syrup bender. Also notable: I’m not much of a comics fan, and I’ve never dreamt in six-panel pages before in my life, so far as I know.

A talking dream wherein Lisa Costello, [info]the_child and I were going somewhere in a car (I think I was driving) and [info]the_child was trying to parse out some English noun phrases. Sort of headline style. She was stuck on “Old English Near Deer”, which means nothing to me now, but at the time had us scouring both print and online references. Unless I was driving a bookmobile, I’m not sure where we got the reference books from, but there you are.

A driving dream involving oddly modified versions of my beloved and long-gone 1975 Cadillac Eldorado convertible, a/k/a “Large Marge” or “The Big Car” (those were my plates, Texas BIG*CAR) and [info]calendula_witch‘s Miata, which had been sprayed white like one of Portland’s Ghost Bikes. There was a party, an someone’s pre-WWII classic got trashed, and I had to spend the night sleeping in the Miata, and there was some long complicated thing about [info]calendula_witch and her current partner doing a zig-zag cross country road trip.

Anyway, I have woken up to relative digestive silence, other than the incessant fundamental bugling. We shall see what the day brings. I have abandoned my plan to see The Hobbit in 48fps today, given my ongoing digestive issues.

At any rate, today cannot possibly be as interesting as my dreams were last night.

God, I hope not.

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[links] Link salad leaves Omaha once more

[info]calendula_witch Announces her first novel sale — Go congratulate her.

StarShipSofa Online Writers Workshop — This is tomorrow. There’s still a few slots open.

Flash Fiction Contest Special Judges and Extended Deadline[info]kenscholes and I are celebrity judges for the Write to Publish flash fiction contest at the end of April.

Spectacular brain images reveal surprisingly simple structure — For some reason this makes me think of Inception.

Types of Extremists — Heh.

When Medicine Was Cheap

Court upholds time limit for clergy abuse claims — So apparently the Catholic Church’s cynical strategy of covering up crimes, tampering with evidence and intimidating victims and witnesses, led for years by the man who is now Pope, is paying off. Please explain to me once more why so many religious people think atheists are immoral?

Study: Conservatives’ Trust In Science At Record Low — When you explicitly privilege counterfactual claims and reality denial, this is what you get. Idiots. Who vote.

?otd: How high can you fly without a plane?


3/30/2012
Writing time yesterday: 2.0 hours (1.75 hours on Sunspin, 0.25 hours of WRPA)
Body movement: airport walking to come
Hours slept: 6.25 (solid)
Weight: n/a
Currently reading: Red Seas Under Red Skies by Scott Lynch

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[writing] The state of play, updated once more

After correspondence with my agent yesterday, I can update the state of play on various projects.

Sunspin (four volume space opera): She really likes the revisions to volume one, Calamity of So Long a Life. I need to produce a short marketing-focused synopsis, about ten pages covering all four books, and she has suggested one more line editing pass for dropped words, et cetera. I’m feeling a little glassy-eyed about doing another line edit on the manuscript, but I probably ought to re-read it anyway in preparation for drafting the balance of Their Currents Turn Awry, which is my project for April and May. I only need another 100,000 or so words on that project to call it done in first draft, so it will fit nicely into that schedule. I expect to produce the synopsis over the next few days, and will come to grips with the line editing issue shortly thereafter.

Going to Extremes (nonfiction book about cancer, parenting and Antarctica): She is still reviewing the proposal, but likes it so far. We’re having a somewhat technical conversation now about cross-licensing and subrights and other nonfiction issues which are new territory to me. I won’t be doing any more new writing on this until she has given me full feedback on the proposal and we agree on what more we need to do for the submission package. I do feel some time pressure on this one, simply because of the timing of being able to make an Antarctic trip.

Little Dog (urban fantasy about a werewolf with achondroplastic dwarfism): Once [info]bravado111 and I wrap up the synopsis, which ought to be fairly soon, she will review it, as will his agent. At that point we’ll decide whether it makes more sense to go to market as a proposal, a partial or a full. Collaborator [info]bravado111 and I will be discussing the writing schedule today, actually, and working out between the two of us how to approach that question from our end.

Our Lady of the Islands (independent novel set in the Green universe): She wants to review this one more time, possibly have another revision round, then go to market, but not in the same immediate time as Sunspin. Since Calamity of So Long a Life will probably be going out in the next few weeks if not sooner, this means Our Lady can go out later this spring. Collaborator [info]calendula_witch and I are in agreement on this plan.

Short Fiction: I have now completed all requested short fiction due before the end of the summer. I need to send “The Cancer Catechism” into the requesting market, and later on in the year I have to write a Fathomless Abyss novella and a Cthulhu short. I have tentatively agreed to take on a couple of anthology invitations in June, when I have another month of Doing Miscellaneous Stuff on my writing calendar, but I don’t have guidelines for those yet. If you’re an editor and you’re expecting something from me that you suspect I’ve missed, please let me know.

Cancer: Of course, all of this is subject to change should next month’s re-tests show that my recently detected liver lesion is in fact a fourth round of cancer. I expect Sunspin to go forward mostly unaffected. Likewise Our Lady of the Islands. [info]bravado111 and I need to discuss a fallback plan for Little Dog if I get seriously sidelined, so status unknown there. Ironically, it’s Going to Extremes, the big, ambitious cancer book, that will likely be the most disrupted from a return of the cancer, simply because of timing. If I spend the second half of this year going through another round of chemo, there’s no way on God’s green Earth I’ll be fit to go to Antarctica during the southern summer of 2012/2013. Also, my short fiction and miscellaneous project work will fall off the table complete if cancer returns, as will most or all of my already limited convention and conference schedule.

A lot going on, and I like being this kind of busy. I just hate the uncertainty.

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[cancer] More detailed thoughts on mortality

Recently I observed:

It occurred to me recently that one way to think about my cancer risks is that we’re all dying, I’m just probably dying a little faster than most of my peers.

Somewhat in parallel to that and a few days later, [info]klwilliams remarked in comments to another post of mine:

I realized what mortality *meant*: you don’t get to find out how all the stories end.

She really struck a chord for me with that observation.

[info]the_child and I have occasionally discussed the hypothetical of whether one would choose to live forever, if one could. (These conversations began even before my initial cancer presentation, and have recurred from time to time since.) She and I both think we would choose that, even at the obvious emotional costs, simply because we both want to see what happens next, next and next after that. We want to know how the stories come out, in short. Where the new ones come from, how the current ones evolve, how they all end. Or not, for stories don’t really end. They just turn into new stories.

For my own part, I made it through the first round of cancer in 2008 so quickly and with so much surprise that I’m not sure I ever took it truly to heart. My oncologist at the time told me my cancer was unusual and very unlikely to recur — I was given 99% odds of not experiencing any metastasis. I went on with my life, happy and confident that we’d beaten it.

When my lung metastasis was detected in 2009, we spent months dealing with and arguing the diagnosis. The oncology team literally didn’t believe their own clinical evidence both at first, and for quite some time after as we pursued additional tests. The recurrence was very much a surprise to every one. Still, I went through the lung surgery and the subsequent non-adjuvant chemotherapy in the first half of 2010 convinced we were going to beat it, and I’d be fine.

The upset and emotional disaster of the departure of [info]calendula_witch from my life at the end of 2010, followed a few months later by the diagnosis of the liver metastasis I’ve just concluded chemotherapy for, finally broke my already battered optimism. At a fundamental level, I’ve gone from believing that I would beat this to believing that this disease is going to claim me in the not very distant future.

I’m not talking about depression, or a difficult emotional reaction. More like a baseline conviction that I’ve already lost the game and we’re just playing for time. To be clear, this is neither my clinical diagnosis nor prognosis. At the moment, I am considered to have “no evidence of disease following resection.” That’s the clinical diagnosis. My prognosis is a 70% chance of recurrent metastasis.

It’s probably coming back.

And deep in my heart, I believe it will get me.

This is why I flash on stuff like being irritated because I don’t know if I’ll live long enough to see both halves of The Hobbit movie. Whenever this comes back, if the metastasis is in the ‘right’ place, we can treat with resection and chemotherapy, but I’ll lose another productive year out of my life as I’ve lost much of the last two years. If the metastasis is in the ‘wrong’ place, i.e., not surgically resectable, I’ll receive life extension therapy but my time will likely be counted in months from that point. Even if it is in the ‘right’ place, there’s only one more chemotherapy option available to me. After that, all the metastases are in the ‘wrong’ place, resectable or not. In effect, every scan I go through is a death lottery for me. (The next one of those is February 14th.)

So the mortality is always there. I’m not dying right this moment any more or less than you are, but like I said, on the whole I’m probably dying rather faster than most of my peers. And [info]klwilliams put her finger on it. I won’t see how the stories come out. The stories of my parents’ lives. The story of my daughter’s growth to adulthood. The stories of my own characters, their fictive worlds and desires. The stories of my friends, my loved ones, everything. Even movies I care about.

In a sense, I’m already mourning what isn’t even yet guaranteed to come. My convictions are emotional, not based on logic or clinical evidence. But they are strong, bone deep. I’ve been battered too long, too many times, endured too many losses to cancer already, to believe that I’m getting out of this one clean at this point.

I can remember when life seemed like it would go on and on. I miss those days.

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[cancer] Talking to my oncologist about mental and emotional health

Saw the oncologist yesterday immediately after my bloodwork. This isn’t the usual order of things, as they prefer to see me the same day as the chemo infusion, but that’s how the scheduling fell out. As, happily enough, I managed to get through this past chemo cycle with no major side effects crises, we wound up talking about my mental and emotional health instead of doing another round of crisis management.

I told her I’d been experiencing a lot of depression and despair these past two weeks. Episodically, not continually, but frequently and strongly. We talked about the blatantly obvious reasons for this, and the less obvious ones.

Obvious to anyone: I have cancer. Duh. And I’ve hit the point in the chemo cycle where I am hard of thinking, and everything has a huge, dire edge. I’m very worried about having another metastasis and jumping right back into treatment in the spring, doing all this shit again and losing another year of my life to the disease.

Less obvious unless you’re familiar with my personal situation: I continue to very much miss my vanished primary relationship, and am at a point where the emotional support of such a relationship would be hugely important if I had it. Also, this is about the time last year when my relationship with [info]calendula_witch really began to disintegrate, so there’s lots of bad echoes these days. And then there’s the whole no more writing thing that’s come on during this chemo cycle, with its attendant consequences for Sunspin, and more generally, my writerly identity.

We discussed whether to go on antidepressants. [info]kenscholes is convinced I need them. I am very resistant to adding yet another psychotropic drug to the hellbrew that goes into my body every two week cycle. She recommended Celexa as being compatible with my other medications, but strongly felt my depression was situational (with which I agree) and that I should wait until I’m off chemo and see how things are going. In terms of depression, I’m still quite functional within the limits of chemo; I don’t spend my days in bed, I meet all the obligations my reduced energy levels allow, and so forth. So it’s an open question.

The most disturbing part of the conversation was when we got back to the potential for further metastasis. She was pretty blunt, and said that my fear was justified and it was quite possible that was what would happen. 50/50, frankly. There aren’t kind words for this, that’s my life with cancer, but it still was kind of a whammy. And yes, I’d rather hear the straight dope than something kindly, but that doesn’t make it any easier.

All in all, a worthwhile but not satisfying conversation. This is the world I live in.

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[cancer] Living in the past

Over the last few days I’ve been going through every single blog post since April of 2008 in order to build an index of my cancer blogging. As of last night, that would be 768 posts out of about 4,000. The raw index (ie, not yet curated by me) can be seen here.

It’s been quite a journey. Reliving the original presentation and the multiple metastases, including the erroneously diagnosed steatosis. The fear, the grief, the pain. Watching the rise and fall of my relationship with [info]calendula_witch, whom I loved more than I’ve ever loved anyone, for all the good it did me in the end.

Not a wayback machine I really needed to climb into.

But this is important. It’s important to have a summary index of key posts so that people new to the blog can get a handle on the cancer blogging if that’s what they’re here for. It’s important to have a listing of the posts so I can begin teasing out a coherent book about it, whether that’s part of the Antarctica project or its own, freestanding effort. It’s important to put some structure on the experience. Because my philosophy from the beginning has been that this is so damned terrible, so damned hard, that I may as well harvest something of value from the experience.

But this review of the past three and half years has been tough. It’s eaten a lot of my time and brainspace, and left me a little more emotionally and mentally numb than I am already wont to be.

The past isn’t such great territory for me these days. Neither is the future. Good thing I can live in the now at least part of the time. Because right now, only the now seems the least bit tenable.

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[cancer] Wishing for a different future

Several folks have pointed me towards the most current xkcd, which talks about cancer and survival rates in that inimitable xkcd fashion.

I know exactly what he’s on about.

In April of 2008 I was diagnosed with primary colon cancer. In May of 2008 my colon was resected, and I was told we’d gotten it. They were so confident that I wasn’t even prescribed chemotherapy to follow up.

In April of 2009, my lung metastasis was first detected. After months of testing, argument and second opinions, my left lung was resected in November of 2009. I was told we’d gotten it, and prescribed a course of chemotherapy that ran from January to June of 2010.

In the post-chemo scans of July 2010 a liver metastasis was detected. My liver was resected in September of 2010, and we discovered that the metastasis was diagnosed in error. I was told we’d gotten it.

In the routine scans of April, 2011, another liver metastasis was detected. I was prescribed a second course of chemotherapy, which was interrupted after four infusions so that my liver could be resected again in July of 2011. In my post-operative consultation with the surgeon this past week, I was told we’d gotten it.

I pointed out to him that I had repeatedly heard that before, yet like a B-movie zombie, the cancer keeps returning. His face fell, and he commented that of course we hadn’t surgically addressed the systemic disease, but we’d met our surgical goals.

It. Just. Keeps. Coming. Back.

I’m a fairly optimistic person by nature, but these past few days I’ve been struggling emotionally. I recognize this for what it is — post-operative depression compounded by the enforced idleness of my surgical recovery — but the roots are real. I only have a 30% chance of surviving the next five years. That’s a real statistic that really applies to me, and to this damned disease that will not quit.

This most distresses me in two ways.

One, [info]the_child is five years from graduating high school. I very much want to be a presence in her life, with enough health to be engaged, at least until she launches into young adulthood. Chemo strips my ability to engage, so while it’s 30% likely I’ll live to see her graduate high school, it’s also quite likely I’ll spend much of that time debilitated and disabled. Not much of a dad for her.

Two, if I just keep getting sick over and over, I despair of ever building a strong life partnership. Since [info]calendula_witch left me, I’ve lost an enormous amount of my emotional self-confidence, and no longer trust my relationship judgment. What I thought I had with her was so misaligned with the reality, especially under the distortions of chemotherapy. Combine this with the fact that since April of 2009, I’ve had about six weeks of time when I wasn’t under either severe mental/emotional stress or severe medical stress from the cancer (specifically the weeks before last April’s scan that pushed me back down this road again). I’ve simply not been myself, not been emotionally or physically able to date, make social, emotional and sexual connections.

I don’t mean that I feel lonely and socially isolated. Far from it. But I have neither the confidence nor the energy to work toward finding another core relationship. And if the cancer keeps coming back as it has so relentlessly year after year, I may never have those things again.

Is it any wonder I’m depressed?

I know once I get back to writing and Day Jobbery, probably early next week, this mood will lift. When I am engaged in my busy-ness, I don’t have time to be maudlin. But right now I’m looking at the years of my life and realizing there’s a very good chance I’ll never really get back what I am, who I am, and what I want most.

That’s just hard to accept with peace, grace and dignity.

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[links] Link salad girds for more medical intervention

A reader reacts to “The Passion of Mother Vajpai” — Short fiction from me and [info]calendula_witch

A Library of Listening, Made by You

Record Tornado Season Caused by Climate Change?Unfortunately, no one knows. Weather is not climate. No single weather event is indicative of climate, no matter how much our friends at FOX point to snowstorms as evidence that climate change is a liberal plot. Weather trends, however, can be evidence for climate trends.

Doing Math Is For Ugly Girls

Japan: elderly engineers want ‘final mission’ to FukushimaA group of elderly Japanese engineers are prepared to come out of retirement to fix the Fukushima nuclear power plant for their final mission.

Pope ousts ‘loose living’ monks of Rome’s Santa Croce monasteryVatican acts after reports of monks staging concerts featuring a former lap dancer and running hotel service. Obviously the fault of hippies. (Snurched from [info]crowleycrow.)

Oregon set to remove faith healing defense for parents — A bill “that would remove the defense of religious belief in the case of homicide”. I will be very proud of my state if we get this completed — faith healing to exclusion of medical intervention is child abuse, pure and simple — and frankly astonished that our powerful conservatives allowed it.

Bradlee Dean Lashes Out Over Prayer Controversy — Amazingly, even conservatives can occasionally be embarrassed by the rabid Christianism they have spent the last few decades so vigorously enabling.

The GOP 2012 Field’s Weak Leaders

Alabama Lawmaker Abandons GOP Over New Law Aimed At Teachers

?otD: Would you like to be Raptured?


5/27/2011
Writing time yesterday: 1.0 hours (1,200 more words on a non-fiction project)
Body movement: 30 minute suburban walk
Hours slept: 7.25 hours (solid)
Weight: 234.2
Currently (re)reading: A Clash of Kings by George R.R. Martin

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[personal] Miscellaneous updatery from high above the Strip

Yesterday was a mighty full day at the Day Jobbe trade show here in Las Vegas. Afterwards, I went to dinner with friends here at Picasso’s in the Bellagio. The conversation was wide ranging and excellent, and the food was, well, nigh indescribable.

ZOMG, that was the finest meal I’ve eaten in years. It began with an amuse-boche which was a tapas-style chicken fritter, followed by a roasted quail and field greens salad, followed by foie gras steak and braised pineapple followed by fallow dear medallions with pickled cabbage and new potatoes, followed by an absolutely bizarre and wondrous dessert of chocolate truffle beignets plus chocolate-dipped peanut butter ice cream, plus part of one my fellow diners’ cheese plate.

I blew my diet from here to Mars, but wow. Back to virtue today.

Odd, unhappy dreams last night, first of [info]calendula_witch, then of me and Mother of the Child involved in some madcap blues music adventure with Charles Barkley wearing a Don King wig.

In retrospect, I’m not sure I should have eaten that meal after all.

Also, I did manage to squeeze in an hour of effort on Kalimpura revisions, just barely.

Walked the Strip this morning again in the other direction, toward Mandalay Bay. Not quite as obnoxious as yesterday’s walk, and I continue to admire the architecture. Though in truth the Luxor mostly makes me think of the Tyrell Corporation.

Even more full today — including the closing reception I think I’m working about 12 hours straight through. A facilities tour tomorrow, then flying home just in time to hop it for Kauai on Thursday morning with [info]the_child.

Be well, write more, stay busy, wherever you are and whatever you are doing.

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[cancer] Settling into a different mind

Norwescon weekend was both rewarding and difficult for me. While I was there, I received an outpouring of love and support from both dear friends and total strangers. But I also found myself uncharacteristically withdrawn, overwhelmed, fatigued. I can already see my healthy mindset melting away and my patient mindset asserting itself in the fog of medical stress.

The habits of illness are so close to the surface for me these days.

Not much is going to happen here until Wednesday’s appointment with the liver surgeon, and the first real checkpoint is the port reimplantation on May 10th or 11th. My cancer isn’t advanced enough for me to be experiencing direct symptoms. All of this is stuff inside my head and heart.

Also, re-entering the cancer space is reigniting my difficult emotions around the departure of [info]calendula_witch from my life. She made a different choice than I would have preferred, as is very much her privilege. I’ve been doing a good job of moving on, but I can already tell that my repeated journey through chemotherapy and surgery will be triggering powerful memories, regrets and far more negative feelings. I’m taking this next journey through hell without a love of the heart close to hand, without a life partner.

Cancer is a lonely house in which to dwell even when one is bonded. I am not looking forward to finding out how much more lonely it will be without her.

At least she’s free of it this time.

So much churn in my head and heart, and I am only at the beginning of another miserably difficult year-long pasage. I so very badly do not want to do this again.

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