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[cancer] Testing, testing, 1, 2, 3, 40%

Today is my first post-chemo CT scan, though I won’t have the results til Monday’s oncology consult. We are looking for additional metastases that may have survived chemo. This will be a quarterly event in my life for next year or two. If things go well in that time frame, we’ll drop the frequency, but I don’t think it will ever be less than yearly.

What my oncologist said was that in the first year, I have a 40% chance of recurrent metastasis. By the third year, if I stay clean in the mean time and don’t re-set the odds, it drops to 10%. By the fifth year, it drops down in the 2% range, which is where the odds stay.

As another doctor, and cancer survivor with a similar cancer history to mine, once said to me and , oncology is “voodoo medicine”. Yes, that’s not very culturally sensitive, but he made his point, specifically that it’s all about statistics and probabilities and hope, because the cause-and-effect relationships aren’t nearly as direct as they are in trauma medicine, or infectious disease. You set a bone properly, generally it heals. You use antibiotics and proper hygiene, generally the infection goes away. You put someone on chemo and hope for the best.

I don’t mean to say this is bleak. I like and trust my oncologist, and I am firmly convinced my standard of care is very high. But cancer is so idiosyncratic. It can be chemo-resistant. It can come back when it’s not expected to. I metastasized from what had been determined to be a Stage I tumor with early intervention. That’s not supposed to happen. This is like playing whack-a-mole for life-and-death stakes.

And today we go looking in the mole holes.

First we head for the infusion center to have my port needle set. They’ll do the bloodwork there, then send me down to the imaging center with needle in place. The CT techs will work through my chest port rather than through my arms, which given my vein scarring and general circulatory weirdness, is a Very Good Thing.

I know from experience that what stresses me out and ignites my fear responses is the test process, not the resulting consult. Logically, this is backwards. A CT scan is just a big, noisy machine and some contrast dye with weird physical side effects. (Me, I feel hot at the injection site and in my nose and lips, suddenly have to poop real bad, and get moderately sexually stimulated by it. None of these side effects are uncommon, though the techs never like to talk about the sexy bits.) The news, good or bad, comes in the followup consult. In my case, next Monday.

And that 40% looms over me like the Lightsabre of Damocles.

I know that even if it comes back, now is not the likely time, just stepping down from chemo. I know the odds are in my favor, even if at a ratio I wouldn’t bet a dollar on. I know my attitude is a big part of this over the long haul. I’m still scared spitless.

Also I’m not doing anyone any favors this week, behaviorally. Instead of melting down over the test, I’ve been emotional in other ways, as can ruefully attest. The psychic toothpaste is coming out of the wrong end of the tube. And the Jay will be going into the right end of the tube in a few hours.

So, fear and loathing in Portland, Oregon today. I’ll be brave at the clinic. I have some dignity. But I’ll be surprised if I don’t have a total meltdown somewhere in the course of the day as well. Then Monday, the results. Which may or may not lead to further meltdowns.

Just call me Mr. 40%.


In other news, I saw an ophthalmologist yesterday about the intermittent eyeball swelling during chemo. There is no evidence of glaucoma or any other eye disease, my corrected vision is still 20/15, which after about four years is the longest time in my life I’ve had a stable vision prescription. She said the unusual vein structure in my eyes (see above re my circulatory system, in effect I have varicose veins in my sclerae) means that when my my body is under certain kinds of medical stress, my eyes simply have too much blood in them for a while. In other words, don’t sweat it.

[cancer] Going in for the last infusion of this cycle

This morning is the last time I go in for my chemo infusion. Session twelve of twelve. We’re bringing cake for the staff (made by and the Niece, with help from their grandmother), a card, two copies of The Specific Gravity of Grief, one for my oncologist and one for the infusion center’s reading library.

Emotional log jam inside my chemo-addled brain. I’ll have intelligent things to say about this later.

[cancer|writing] Writing through cancer

I spent a bunch of time discussing my wrtiing with my therapist earlier this week. In the moment, it seemed like an odd choice of topics given everything going on in my life, but I’ve realized now where he was going with it.

I am a writer.

Period.

I may have given up everything from laundry to shaving. I may not drive at night any more. I may not be able to do a fraction of the things I expect and desire from myself some days, and on my best days can only dream of reaching half my normal energy and activity levels. But damn it, I continue to write, no matter what.

This is not my sole identity, of course. I am a traid at the core, I think — father, friend/lover and writer.

What does this mean?

At the first, I am a father to . But fatherhood is as much as state of being as it is an assertive act. She can come to me, I can seek her out, we can discuss homework or the latest school gossip or go eat a meal together. It happens almost organically, arising from (her) lifetime’s worth of habits. And I will always be her father, no matter what becomes of me.

I am a lover as well, a friend, a social being. Those roles are assertive acts, but they are also to some extent states of being. Especially these days, when the people who care for me and about me are going to extraordinary lengths to make sure our connections remain strong, that I am living, eating and sleeping properly, and in general giving of themselves for the sake of what I cannot always do for myself right now. I will return to them in my full strength in due time, and give it all back with interest, as I have always done.

But as a writer? That is only an assertive act. We talk about the habits of writing, but it’s always easier to sit on the couch and rest, or slip a DVD into the player, or putz around on the Internet. Writing does not come to me on momentum and a lifetime of accumulated goodwill. It only comes from me when I work at it. Even now. Especially now.

So this morning I got up at 3:30 and worked on “The Stars Never Lie” for an hour. I wrote about 1,400 new words. That’s a little slow for me in normal health, but on chemo in what is essentially the middle of the night, I’ll take it. This one is coming slow, anyway, as some of my best have. I don’t know if the writing pace is a chemo thing, a story thing, my process evolving, or something else entirely, but it doesn’t matter. When I’m done with the draft, I’ll fix whatever’s wrong, improve whatever’s right, then I’ll write something else.

And that’s what my therapist was getting at, I think, in his directed Rogerian way. I maintain myself through cancer and chemo by maintaining my self-definition. The part of that requiring the most direct, assertive action is writing. That is the one set of behaviors which is not externally reinforced.

I am a writer, so I write. I write because I want to, because I need to, and right now, I write most of all to deny cancer the place it wants to take at the center of my life.

[cancer] Sacrifices made for me by the petty gods of chemo

I am finding that every chemo infusion cycle is different. I don’t suppose I should be surprised, but somehow I am. Lower GI pattern during after session three has been broadly consistent with sessions one and two, but the details have varied a lot. Less painful and difficult so far, for one, anent which I am deeply thankful. On the other hand, peripheral neuropathy in my feet is just getting silly.

Time management is slowly becoming a larger issue. I’m not having too much trouble holding on to core daily commitments — sleep, exercise, time with , Day Jobbery, writing time (during the phases of my infusion cycle where my right brain unfreezes). Nor my larger social and emotional commitments to , , my family, my friends, my online community. But when individual tasks or habits fall away, reinstating them is damned hard. I’m becoming canalized. Oddly, my left brain seems to go almost manic as my right brain is frozen, hence all the blogging. I rather wish it were the other way around, but I don’t know how to flip that switch.

I don’t leave the house so much now. There are days when driving is tough, and I virtually never drive at night any more. (Nor do much else at night, since I zone out so early due to the ongoing exhaustion.) This is disconnecting me from my long term practices of social lunches, errand running, and so forth. Which since I live and work alone have been pretty critical to me. Not sure what to do about this, except continued to tough it out. Even the few social plans I do make seem to cancel often as not due to the illness of others — I can’t be around sick people as my immune system continues to falter in the face of chemo. I do expect to catch lunch with today for the first time in over a month.

Likewise, the focus to read. I managed to finish John Burdett’s Bangkok 8. Both Elizabeth Bear’s Bone and Jewel Creatures and Mary Robinette Kowal’s Shades of Milk and Honey are waiting for me to pick them up. But the narrow bandwidth I have to work on Endurance plus my few other writing and editorial commitments completely consumes the same brainspace that reading does.

That might be my greatest regret, that I’ve essentially lost books. And I simply don’t have enough time left over to make time for them. Writing cannot be sacrificed. Neither can sleep, nor exercise, nor work. Maybe I can peel in a few hours on the non-infusion weekends, but it will take me months to read a book at that pace.

I feel like these sacrifices are being made for me. The choices essentially don’t exist, once I’ve bowed to the core inevitabilities. I don’t mean to sound fatalistic, I actually continue fairly cheerful and optimistic through this process. I just don’t have nearly as much control over my time or my life as usual. At least I’m keeping on deadline with my fiction, and keeping up with my core commitments.

This will not go on forever.

[links] Link salad wakes up in the land of Tuesday with a lot to say

Good cancer news: [ jlake.com | LiveJournal ]

A reader reacts to Mainspring Powell’s | Amazon thb | Barnes & Noble | Borders | Audible ] — Not with the liking. No sir, not at all. In fact, they disliked it so much they compared my work to Neal Stephenson.

Amazon Kindle doomed to repeat Big Brother moment — Legal angle on Amazon’s recent Orwell flap. DRM FTW!

Criggo is on a roll with the classic sexist advertising here and here — Wow. Mid-century kink. Who knew?

Bathing in the Casino: 1889Shorpy with a photo of how the other half used to live. Wow.

Galactic Life in ContextCentauri Dreams with some very mind-expanding stuff on treating the evolution of life as a galactic phenomenon rather than a planetary phenomenon. All you hard SF types, word up.

A Supernova Blossoms In A Neighboring Galaxy, And The Shockwave Is Aimed At Earth — As says, “Now we know when and how.”

Science Is in the Details — Religion at the NIH. (Snurched from Pharyngula, who explains this much better than I can.)

on healthcare finance — He says it very well. BTW, if you don’t understand the difference between “single payer” and “single provider”, shut up about “socialized medicine” and go learn something about the terms of the debate. (Thanks to .)

More stone cold bastard GOP moralizing hypocrites — Remember kids, character counts. That’s why we always vote Republican. [And because some of my conservative readers seem to consistently misunderstand my point, I’m not twitting the sex. I know all about Clinton, Edwards, Kennedy, etc. I’m twitting the hypocrisy of building a political career on publicly condemning the immorality and sexuality of others, while privately being just as fallible.]

?otD: Where did Lefty get the bread to go?


7/28/2009
Body movement: 10 minutes of meditation and stretching, 40 minute suburban walk
This morning’s weigh-in: 224.4
Currently reading: Diplomatic Immunity by Lois McMaster Bujold

[links] Link salad for a hump day

Don’t miss the upcoming Borderlands Books events in San Francisco on 7/18: [ jlake.com | LiveJournal ]

In the same vein, there’s an open dinner in San Francisco next Monday: [ jlake.com | LiveJournal ]

The blog subtitle poll

Real life cartoons — This life portrait of Charlie Brown makes my head hurt. Wow.

Death by lightning for giraffes, elephants, sheep and cows — Finally, a potential explanation for why cattle are so vulnerable to electric shock. Something I’ve wondered about for years. (Some moderately disturbing photos of injured and dead animals at this link.)

Fast Orbiter to HaumeaCentauri Dreams with an interesting squib about dwarf planets and the outer solar system. Also, learned a new astronomy term from this article – “frost line“.

Co-opting a Cancer Treatment to Spur Fat Loss — An intersection of two concerns of mine.

Get Fuzzy on BDSM — Sort of. Heh heh.

Conservative Hypocrisy on Race & Sotomayor — With documented examples, for those of my readers who consider me a liberal whiner.

A rat done bit my sister Nell.The Edge of the American West on conservative idiocy and textbooks in Texas. Repeat after me: just because you believe it, doesn’t mean it’s true. It sure as hell doesn’t mean you poison textbooks for a generation of schoolchildren, you stupid bastards.

?otD: Omawhere?


7/15/2009
Body movement: 40 minute suburban walk (Big Papio Trail in Omaha)
This morning’s weigh-in: n/a (travelling)
Currently reading: Mirror Dance by Lois McMaster Bujold