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[cancer] Field notes from Cancerland, peeling fingers edition

Hand-Foot Syndrome

I’m off the Regorafenib this week as part of the monthly dosage cycle. This seems to mean that my feet hurt a little bit less, and there’s also less pain in my hands. Even so, my lovely case of hand-foot syndrome progresses. There’s some cracking in the skin around my heels. My fingers are peeling like crazy. (Though oddly, so far my thumbs are not.) I am not seeing rawness yet on the fingers, and the peeling barely even itches. It’s just kind of weird.

Sleep

Regorafenib continues to play merry hob with my sleep cycle. I tire and fall asleep too early, and sometimes also pass out in the afternoon. Yet I’m awake between 2 and 3 am every day. Sometimes I can get back to sleep, mostly I can’t. I’m netting five hours and perhaps a bit more of sleep most nights, occasionally six or so. Weirdly, even Lorazepam does not seem to help this very much. As it happens, I’m surviving okay on this level of sleep, but it leaves me without mental or physical reserves, at a time when the treatments and the stress of terminal cancer eat at my heart, mind and body.

Busy-ness

I have been very, very busy this week. Day Jobbery is wrapping up with various project handoffs, knowledge transfer efforts and so forth preparatory to me going on disability as of 7/2/2013. In order to do this, I have four separate disability claims that need to be filed and followed up on: FMLA, Short Term Disability, Long Term Disability, and SSDI. This in addition to a considerable amount of detail effort to manage my severance from the workplace. Not to mention all the followups and action items from multiple recent meetings with attorneys (plural), the financial planner and the accountant. And everything else that goes on around here normally, including writing business, dealing with health insurance, medical appointments and so forth. So, yeah, busy.

Writing

Speaking of writing, I am at least moderately back on the horse. I worked last night on finalizing METAtropolis: Green Space, specifically my own story and that of the mighty [info]kenscholes. I have to bat clean-up on a number of minor items today. With any luck, tomorrow I can return to my work effort on drafting Original Destiny, Manifest Sin. I am slowing down (see below), and I’ve for the most part stop accepting invitations to contribute to markets. Just getting through what I have in front of me is close to impossible. The new, it is receding. Even so, I am still writing.

Cognition

I continue to notice mild cognitive impairments. A combination of memory lapses and being hard-of-thinking. Not sure if this is a Regorafenib effect, a stress symptom, or just my general state of being after all the chemotherapy of the past few years. Most likely all of the above. One place where this manifests starkly is that my ability to either explicitly multitask or to juggle multiple tracks of effort in a tightly-coupled process has all but evaporated. I’ve turned into a one-thing-at-a-time guy. Something that hasn’t been true of me ever, right back to the very beginning of my life. I feel the loss of some of my capability.

Palliative Care

Today, Lisa Costello, Dad and I are going to see a palliative care specialist to talk about end-of-life planning some more. I expect this appointment to cover everything from pain management in my terminal decline, to hospice care decision making, to advice on administrative and financial issues. Like so many of my meetings of late, it will be sobering and overwhelming. This is a difficult path I walk now. Appointments of this nature are trail-blazers that lead me to where the shadows deepen and the light leaches away until I am left with nothing but blood, bone and fear.

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[cancer] Field Notes from Cancerland, midwestern BBQ edition

Regorafenib Side Effects

I’ve been taking the new medication for a week as of this morning. Side effects started showing up around this past Thursday, about four days in. The most noticeable is the early stages of hand and foot syndrome. Right now this expresses itself as a sharp heat intolerance in my hands and a mild heat intolerance in my feet. This makes it hard to take a shower. I am also experiencing soreness and pain at any pressure. This makes it hard to carry anything weighing more than a pound or two, as well as open jars and bottles, as my grip has already degraded almost completely. Not to mention walking is becoming painful.

I am at risk of becoming chair and bed bound from this, and of losing most of the use of my hands. I can cope with a fair amount of that, but not the loss of my ability to type, or read electronic and paper material.

I’m also becoming hoarse and losing my appetite, which are probably Regorafenib related as well. I expect pathological fatigue soon, though that hasn’t appeared yet, and possibly a number of other issues.

This is only the beginning. I have seven more weeks of this regime before we evaluate progress with another CT scan. We’ll see how sharply I decline over the coming weeks.

Return of the GI Follies

I am having GI issues which are almost the opposite of Regorafenib’s stated side effects in that area. Things are binding up and slowing down in my lower GI. This is unusual for me, given the architecture my multiple surgical interventions have left me with. Erratic, fast and loose is far more my everyday experience. I’m not sure if this isn’t just some transient dietary thing or what. We shall see.

Writing Progress

[info]garyomaha asked me yesterday over dinner if I was still working on Original Destiny, Manifest Sin. My answer was yes, but not right this moment. I’ve had multiple event interruptions in my writing (Gaslight Gathering, Nebula Awards Weekend, Rio Hondo) while being focused on the METAtropolis: Green Space project, that has a final due date in two weeks. Plus the “Hook Agonistes” collaboration with Seanan McGuire. I’ve actually been getting a fair amount of work done, but much of it has fallen under my generic category of WRPA (writing related program activities) rather than the advancement of wordcount on specific manuscripts.

Given the advance of both cancer and Regorafenib, I am very mindful of having a short fuse on all of this. I expect to be back on Original Destiny by this coming weekend, if not a bit sooner, and will be focused on that until I’m either done or am confronting an interruption too critical to power through.

Business Issues and Interviews

I’ve been pursuing several parallel tracks of business issues related to disability and estate planning. When those reach a point of fruition, I will discuss them here on the blog. Some things need to happen at their own pace, in confidence, before they can be outlined in any detail. That coping with cancer should involve Sekrit Projekts is both annoying and inevitable. On the plus side of Sekrit Projekts, The Oregonian will be running another in-depth interview with on Sunday, June 9th. I’ll link to the online version of that interview when it becomes available.

Star Trek Into Darkness

This isn’t at all cancer related, but it’s interesting and entertaining. My recent comments on Star Trek Into Darknessimdb ] have provoked quite a set of responses.

Some are here and here on my blog, but the majority are on Facebook here and here. See also this thread on the Facebook page of Nikki Nmd which riffs on some of my remarks.

Fascinating, the range of reactions, not to mention the depth of passion behind those reactions.

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[personal|writing] Being busy

I am busy these days. Working under a mortal deadline is wonderfully clarifying to the mind. Even if I am wrong about the immediate future, I am not wrong about the general trend of my disease, so the things I am trying to do right now apply regardless.

As mentioned recently, I have temporarily suspended work on Original Destiny, Manifest Sin to grod around closely inside of METAtropolis: Green Space. In the past three or four days I have done a close read on stories by Karl Schroeder and Elizabeth Bear. Today I’ll dive back into Ken Scholes‘ story. Editorial work is very different from writing a first draft, but they come out of the same general space in my brain. Each has its joys. I’m committing a minimum of one hour per day to this task.

There is also an ongoing project to simplify the holdings here at Nuevo Rancho Lake. Hence the recent Basement Party, and future such in late May and through June, most likely. I have committed at least half an hour per day (though yesterday it wound up being more like two hours) to advancing that ball. Lately that has been a lot of sorting through receipts, files and paperwork to determine what needs to kept for tax purposes, and what can be disposed of. Also, walking through my large and essentially random pile of CDs, CD-Rs and DVD-Rs to make sure whatever is on them has been captured either into iTunes or into my photo files as appropriate. Later there will be larger scale decisions about the disposition of books, clothing, furniture, art, et cetera. I’d rather I do these things now than someone else have to puzzle through them after I’m gone.

Plus Day Jobbery, parenting, relationship time with Lisa Costello, keeping up with friends and family, forthcoming travel, and so forth. So, yes, I am being busy.

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[cancer] Field notes from Cancerland, part 2 this week

Baseline Health

My baseline health is a bit poorer than it has been in the past, even allowing for the fact that I’m on light artillery chemotherapy. My nails are splitting and cracking much more readily. My gums bleed excessively from tooth brushing. My ongoing weight gain is disproportionate to my dietary intake and exercise levels. (In the past I’ve been able to keep 20-25 pounds lighter with this same behavior patterns.) I wonder if those are related to evolving liver issues, though so far the biochemistry doesn’t suggest that. I also wonder if they’re stress-driven. Psychosomatic, in other words.

Stress and Meditation

I saw my therapist yesterday. We talked a lot about my stress levels, which are pretty much off the charts for both painfully obvious reasons as well as some exacerbating issues I don’t discuss here. He suggested I try meditation. As it happens, Lisa Costello has a daily practice, so I will discuss with her how she goes about it. Meditation has never been terribly successful for me in the past, as I find it difficult to focus that tightly, but I guess that’s kind of the point: reaching that focus.

Writing

I’m currently operating under the assumption that I have about three months of productive writing time left in my life. Possibly as little as two. This is due to my anticipating going back on heavy chemo next month, and knowing what that usually does to my creative brain. Of course I would love to be wrong, but right now I have to act as if this is the case. I’ve abandoned all but three projects. Original Destiny, Manifest Sin is ongoing, and I try to spend at least an hour a day on that. I’m also writing bridging material for Jay Lake’s Process of Writing, forthcoming from Apocalypse Ink. And I’m working with [info]kenscholes and series editor Steve Feldman to get METAtropolis: Green Space edited and out the door. Pretty much anything else I have on my plate is either being abandoned or seeking a collaborator. If I do wind up with a bit more time, I believe I will spend it working on short fiction. If somehow I wind up with a lot more time, well, we’ll see.

My Premortem Wake

I have received a very generous offer from some experienced con runners to manage my premortem wake. If things go the way I fear, that may coincide with JayCon XIII. Otherwise, it will happen as appropriate, sometime within the next year most likely. The trigger will be me receiving a terminal diagnosis. I’ll want to do it soon after, before medication or the progressing illness render me less and less able to enjoy the proceedings.

Photography

I think I want to start documenting my portrait. In a perfect world, I’d work with a pro photographer and do a weekly shoot. As a practical matter, I may set up a tripod and camera in a semipermanet installation in my house. Either way, I can capture myself in a series of portraits from now until death. I need to think this through. I think it would make a hell of an art project.

Basement

We continue to scour the basement here at Nuevo Rancho Lake by way of simplifying the stuff in the house before the shit all hits the fan. There will be concerted collective effort this Sunday. All sorts of things are surfacing, including the aforementioned note from my 8th grade English teacher, some of my Hugo and World Fantasy Award nominee pins (some are still missing), and my 1980 Connecticut driver’s license. Also, some long-missing belongings of both [info]the_child and Mother of the Child. It’s a very strangely mapped trip down memory lane.

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[personal|cancer] This and that

Here at Nuevo Rancho Lake, we have been enjoying a delightful visit from the effervescent Crystal Black. Sizzle Pie, Deschutes Brew Pub and Voodoo Doughnuts have been involved. Mmm mmm mmm.

Meanwhile, [info]the_child goes back to school this morning from her two-week spring break. This is perhaps less delightful, at least from her perspective. To make up for it, she has an out-of-town friend coming to visit later this week. And she’s done some pretty spiffy growing up just lately.

I have session three of series four of my chemotherapy today. This will be my thirty-third infusion in the past 39 months. As regular readers of this blog know, I am on Vectibix now by infusion, plus Celebrex orally twice a day. I refer to this combination as the “light artillery” chemotherapy. It only tires me modestly, doesn’t seriously disrupt my GI function, and has no obvious cognitive effects. I merely suffer from a basket of interesting and unfortunate skin conditions, plus severe photosensitivity. On the grand scale of Unfortunate Chemo Side Effects, this really isn’t much.

And the book is moving now. I may have to take a bye today, as I am going straight to chemo from Day Jobbery this afternoon, and I seriously doubt that even on this much lighter chemo my head will be straight to write afterwards. If nothing else, there’s some pretty serious emotional backwash that always hits me from going into the infusion center.

Finally, I am off to San Antonio on Wednesday for Paradise Lost. Which will be a lot of fun.

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[writing|process] Yet more work on Original Destiny, Manifest Sin

Two questions emerged during yesterday’s efforts on Original Destiny, Manifest Sin. One is a character issue, the other is stylistic but at a very deep level.

Regarding characters, [info]klwilliams commented thusly:

“No female perspective for Manifest Destiny? [sic] I think you’re missing a good opportunity if not.

This flushed out two issues for me. One, the stated issue she cites, that I don’t have a female POV on the Manifest Sin side of the plot dynamic. Two, that despite decades of careful effort, I’m still quite capable of unconscious sexism in my writing. Of the seven protagonists named in yesterday’s post, one is female. Four are white men, though one of them is essentially undead through most of the book and another is a ghost through much of the book — I don’t think that lets me off the hook. One is Native American and one is Chinese, and one of the white men is gay.

This is why we have first drafts. To find such issues and correct them. Because while I don’t labor at political correctness, I am perfectly aware that world today is constituted of far more people who are not straight-identified white men like myself than it is of people who look and sound and act like me. I am also perfectly aware the historical reality is likewise constituted of far more people who are not like me. It just makes sense to me to write about the world in all its complexities. Plus that’s just more interesting. I’ve held this view since long before I had a writing career. And still my unconscious defaults can take hold when I am not paying attention.

Stylistically, yesterday I drafted the first dialog between Original Destiny and Manifest Sin. Oh great Ghu is it bad. I’m talking junior high school poetry bad. Declamatory text, fruity diction, overwrought emotional color. Stinky, stinky, stinky. Very wrong for what I want and need in this book. Yet what they are actually saying to one another is almost exactly what I do want and need.

Long experience tells me not to revise while I’m drafting. I know some writers do that, but I’ve also seen a lot of writers fall down that hole and never come out with a finished manuscript. Again, this is why we have first drafts. The dialog says what it needs to say, however badly it does so. I’ve satisfied the structural and thematic needs of the book here. Later, on revision, I’ll go back and rip it out and try again to capture the voice and flow and rhythm and speech register and sensibility I want there. For now, this steaming pile of angsty crap will serve as a placeholder and carry my intended meaning until I’m ready to do those dialogs proper justice.

Later, though. I have a book to write in the mean time.

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[writing|process] More work on Original Destiny, Manifest Sin

I really need to come up with an online icon for this book.

Spent a bit of time yesterday mapping the timeline and structure of Original Destiny, Manifest Sin. I’ve realized I’m going to have to approach this book differently from any of the other 20+ first draft novels I’ve ever written. With the partial exception of Madness of Flowers, I have always written in reading order. This regardless of how the plot or narrative timeline are structured. Even when writing first draft, my experience of story is remarkably parallel to the way I experience story as a reader.

Except that’s not going to work on this book, unless I want an especially messy first draft. And the meta-requirements of the voice of the book impose another layer of craft I really don’t think I can account for with my usual linear writing problem. I need the piece to be a dialog between Original Destiny and Manifest Sin. In my character sheet, I have labeled them “urges”. That word is a backformation from demiurge, and is a concept I’ve explored somewhat in the Green continuity. (Which, to be clear, is entirely a separate thing from the continuity of this book.)

In simplest terms, Original Destiny is the voice of pastoralism, premodernism, magic, divinity and the naturalistic world of God’s creation. The Dionysian impulse. The feminine principle. Mythos. Manifest Sin is the voice of industrialization, Enlightenment civilization and an increasingly mechanized, deterministic empirical world. The Apollonian impulse. The masculine principle. Logos. I need to work on those definitions a lot, obviously, but it’s the dialog between those two voices that must frame the book and provide the through-line, reader identification and narrative continuity. And I have to do so in a way which engages the reader’s attention.

So yesterday was a lot of thinking about that.

Likewise, I was looking at my character list with an eye toward whose individual stories are being told to highlight this tension. It is pretty obvious from how I’d first begun to address the story that my personal sympathies lie strongly with Original Destiny and the Dionysian impulse. But then The Adventures of Baron Munchhausen was always my favorite movie of Terry Gilliam’s Apollonian-Dionysian film quartet. However, this book isn’t about my personal preferences. I want to tell this story as a sort of parable about the evolution of the modern world, and it doesn’t serve me well to impose a moral axis. The Apollonian-Dionysian tension is fundamental to the choices that govern both culture in general and our individual human existences in particular, at least when seen through the dualistic lens of Western thought and philosophy. It’s not a good-evil dynamic at all, though in our world both great good and terrible evil have arisen as real consequences of that dynamic. And that Western dualism is decidedly the tradition in which I write and live my life.

Still, I will have my little jokes. So when I realized that Original Destiny was well-represented in the human narratives by Peony Sykes, Red Eyes Parker, Li Cheng-Ho and William Clark (who in historical reality was very firmly a creature of Manifest Sin), but Manifest Sin only had Aaron Burr and Thomas Edison to tell his story, I had to add another major point-of-view character. In this case, the logical choice seemed to be George Armstrong Custer. Why? Because I can!

So, anyway, that’s where my head is at today.

PS: I debated going into this much detail about my internal process in developing the book. I don’t normally reveal quite so much. But I figured, why not? It helps me to articulate my thoughts, and might be a useful glimpse into my writing process for those of you who read this blog primarily from a writer’s perspective. Feel free to ask questions or seek clarification on what I’m discussing.

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[writing|process] Working on Original Destiny, Manifest Sin

I’ve been working on Original Destiny, Manifest Sin. Which is to say, I’ve read the roughly 17,000 word stub I’d already written, plus the unpublished short story “Fool’s Curse”. Plus the synopsis. Plus the other synopsis. Plus the timeline.

It’s a damned complex book. I mean, I knew this all along, but I know it all over again.

So yesterday I drew up a Dramatis Personae. Named characters. Significant unnamed characters. (The killer angels, for instance, do not have names at this point, though they have distinct personalities and important roles in the story.) Named animals, mostly horses, oxen and dogs. (This is the Old West, after all.) Named places that are ahistorical. Named steam rams. And identifying the story year(s) in which each of these occurs, because the narrative spirals through the first 70 years of the nineteenth century, wandering across both space and time as the story unfolds.

I was laughing at myself for naming horses that don’t even appear on the page, for example, while leaving all sorts of people referred to only by their presence in a crowd or their profession. It feels right, but it also feels complicated. I expect that by the end of the weekend I’ll have begun laying down new words, but I need a very good handle on this indeed for this book to come together anything like my vision of it.

This is the most fun part of writing for me. Primary creation.

Just for fun, here’s the named animals so far. One of them is an actual historical character (so to speak). I will leave it as an exercise for the reader to decide which names belong to horses, oxen and dogs, respectively. In some cases, it should be obvious.

  • Belle
  • Seaman
  • Bucephalus
  • Kennesaw
  • Faith
  • Poquito
  • Little Dog
  • Mencius
  • Esau
  • Jacob

I am having a very good time with this.

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[writing|process] Once more with the diving board

I’ve commented before that for me, writing often feels like jumping off a high diving board and filling the pool on the way down. The more substantial the project, the more I tend to experience this sensation. Which means sometimes there’s a pause for breath before I step off the edge into space.

I’d committed to myself to start writing Original Destiny, Manifest Sin this month. That’s my Old West alternate history fantasy. So what did I do Monday? Two hours of critique, batting clean-up on the recent Writer’s Digest University online workshop in which I participated. What did I do on Tuesday? Spent ninety minutes reading first drafts of some of the stories for METAtropolis 3: Green Space, the audiobook project I am co-editing with [info]kenscholes for Audible.com. Both of these were necessary and timely Writing Related Program Activities which resulted in zero effort being put in on Original Destiny, Manifest Sin.

(In case you’re wondering what I did with the rest of my time these past two days, recall that I have a full-time job, a teenager in the house, and late stage metastatic colon cancer. I keep busy.)

So today I am stepping off the board. As almost 100 pages of Original Destiny, Manifest Sin exists from my first, aborted effort to write the book most of a decade ago, I’m going to start by re-reading that. I need the characters and more importantly the setting to reinhabit my head.

One of the real challenges of this novel is that it is driven by plot and setting. There are multiple viewpoints with no strong central protagonist. That undermines opportunities for reader identification and can cause problems with the through-line. I think I know how to resolve this, based on input from Howard Waldrop and Maureen McHugh at Rio Hondo a few years back.

And, well, if I’m ever going to write it, now would be the time. I expect to be seriously ill with cancer treatments again in either June or August, and I don’t expect to ever recover from that once I go down that road again. Essentially, unless I get unexpectedly lucky along the way, I have one last time window in which to write this novel. Or any novel.

So once more with the diving board. Today, I jump. Likely no word count today, as reading and making notes will almost certainly occupy as much time as I have available (if not more). Still, I am stepping back into my own personal once upon a time in the West.

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[cancer|writing] The road goes on forever, and the party never ends

I have very mixed feelings about my weekend at ICFA. Not at the professional level, wherein I had a gloriously fine time at the conference. Nor at the social level, see above. But at the level of internal reflection and how I experience things through the cancer lens.

I still haven’t sorted out what I thought and felt while there. It’s complicated. So, in no particular order…

Meeting and talking to a lot of students, facing a lot of life choices, reminded me that so many of my own choices are shutting down or being cut off due to my mortality. This really isn’t a feeling I have experienced prior to the cancer. Even as I’ve aged (relatively speaking, I’m only 48), I’ve always seen myself as having copious professional and personal choices. Not so much, now, not with the commitments I have. Some of those commitments are joyous, being parent to [info]the_child, for example; and some of those commitments are reasonable, such as my Day Jobbe career. But mostly I’m committed to this path of mortality which already restricts the kinds of plans I can make and dreams I can work on, and promises to soon restrict those much more tightly, until eventually they contract into the narrow point of my death.

Likewise, seeing a number of old friends and making some new ones in the process kept reinforcing my sense of being on a Farewell Tour. As I said the other day, while this might well be true, it’s not a helpful mindset. Yet there I was. Melancholy set in pretty hard.

My tolerance for social static and disruption is leaching away. Likewise my patience. I do not like these trends in myself. I’ve always aspired to be a good listener, a good friend, understanding about the challenges of human nature. As my illness evolves, I become more and more inwardly focused, which makes me less and less of those things.

I gave away or ditched most of my free books from the conference. I found myself explicitly thinking, “No, I cannot have more stuff at home.” I’m giving things away, not taking them in. Given my lifelong natural tendencies to be a hoarder, this is another dying kind of thought. My joy in stuff has almost vanished, taking with it much of my desire. These days when I look at books, one of my key thoughts is, “Will I live long enough to read it?” That’s not me, that kind of thought. Except now it is.

Meanwhile, cool things keep happening. I signed a nice little subsidiary rights contract yesterday which I’ll be able to announce soon. There’s various other bits of good news coming down the pike in my writing life shortly. I’m about to start writing Original Destiny, Manifest Sin. That online course I’m teaching starts today, and I’m giving a science lecture tonight. Friendships and loves bubble along, I still put my own socks on every day. There’s plenty to live for on a day-to-day basis. But the sadness keeps creeping in.

The road may go on forever, but I can see the end of the party from here.

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