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[child] She just keeps growing up

[info]the_child sings Papagena in her 7th grade class production of Mozart’s opera The Magic Flute tonight. When I was in seventh grade, we were doing skits about a farmer and his horse. I cannot help but be impressed.

Recently, a high school friend who’d moved to Portland contacted me. We had lunch, and as a result, he, his wife and his daughter are planning to attend tonight. I had mentioned this to [info]the_child, so yesterday she asked me his name, looked him up on Facebook, and sent him a note introducing herself and telling him how pleased she was he would be coming to the opera, and that she was looking forward to meeting him and his family. This piece of social grace was utterly on her own initiative.

In another frame, the mother of one of her school friends is having a very difficult struggle with metastatic cancer. Though she has not shared her prognosis, hope is growing thin on the ground right now. Yesterday [info]the_child asked me, as she has once before, what her school friend would do without his mother. We had a long, thoughtful talk about cancer, death, parenting, love and community, but especially about the hopes of a parent for their child, and the needs of a child for their parent at the different stages of life. I didn’t have any good answers to give her, because there aren’t any in a time like this.

We also talked about what it meant to “fight” a disease. [info]the_child pointed out that both [info]calendula_witch and [info]shelly_rae had been instrumental in keeping me fighting when I was at my worst. We agreed that love and family were very important.

Who is this mature, reflective, loving human being, and what has she done with my daughter?

[cancer] Seeing it from the other side

I have a friend here in Portland who is in his mid-60s. He’s going through a very similar cancer course to mine, albeit significantly more severe, as his primary cancer had already metastasized when first detected. Yesterday I had planned to visit him at his house, mostly to listen, and also to talk about strategies for surviving chemo with heart and mind and body intact.

Yesterday, he was admitted to the oncology ward of his treating hospital for severe complications from chemotherapy. So I visited him there instead.

Without too much detail, he’s lost about thirty pounds in the past eight or ten weeks. He looked dreadful. After two months of chemotherapy, he was worse off than I was at the end of a six-month course. I sat with him for about an hour and half while his family ran errands, and mostly we talked. Slowly, on his part, and listening on my part.

The tiny, hospital smelling room; the infusion pumps gently clicking; the beeping of alarms in the hallway; even the look of the bed — this is his journey, not mine. But I’ve been on a very similar journey, and have even odds of getting my ticket punched for the chemo trail again in the near future. Being there put me in a very odd, fragile mental and emotional space.

Did I look like this? I don’t think so, but I never saw myself from the outside. Did I have the cognitive disconnects he was going through? Absolutely.

I realized anew yesterday how frightening my chemo course must have been to [info]the_child, to [info]calendula_witch and [info]shelly_rae, to my family and friends. I realized anew how frightening it was for me.

He’ll probably be ok, my friend. The complications have been stabilized, they’ve identified the reason for the weight loss and are remediating that. Me, I walked out of there weeping for him, for me, for all the lost years and lives that cancer steals from the living and the dead.

[cancer] Looking back and forward

There’s obviously a lot of transition going in my head and heart right now. In my life as a whole, I suppose.

Physically, I feel better right now than I have since right before the lung surgery in November, 2009. After spending months waking up every day feeling, at best, like I just got over a dreadful flu the day before (and those were the good days), I now wake up feeling like I partied too late the night before. Not hung over, just worn. The dissolving stitches itch, the scars kick up sometimes, fatigue still stalks me but without overwhelming. Honestly, I feel so damned good, and it gets better almost every day.

Emotionally and mentally, this has been quite a week, as noted. I lost a few days, so won’t be starting Kalimpura until this weekend or early next week. Not a crisis, but I am a bit disappointed in myself. calendula_witch and I are doing an extraordinary amount of talking right now by way of relationship maintenance and post-chemo re-entry into the fullness of my personal life. It’s not pretty, but it’s loving.

I would not have gotten here today without a hell of a lot of love from a lot of people. calendula_witch herself, first and foremost, of course. shelly_rae, who poured an enormous amount of love and affection and attention into me in my most desperate hours of need. My mom (tillyjane), dad and step-mom. the_child and her mother. My friends and loved ones in Portland and all around the world. You, reading here today.

Thank you, all of you. You helped me hang in long enough to do what I’m doing right now: get my life back.

[personal] Incinerating the damned candle in a blast furnace

Who says a candle only had two ends to burn?

Friday morning I woke up at 1:30 am Pacific time to catch my plane out of Omaha. Arrived in Seattle about 1:30 pm Pacific time, spent the afternoon with markbourne. We met up with calendula_witch and markferrari in the late afternoon, then hied off to a hastily-arranged dinner at Coastal Kitchen with e_bourne, mikigarrison, criada and kehrli. Dinner was lovely, if tediously overlong, and kehrli gave me an incredibly sweet and thoughtful present.

After dinner we hauled off to the final Clarion West party, with a cast of dozens, including shelly_rae, scarlettina, jackwilliambell and tons of other folks. By the time we got there, I’d been up for about nineteen hours. By the time we left, I’d been up for about twenty-two hours. I could not walk in a straight line. I had a lot of fun, but by Ghu I have not burned it that hard in most of a year.

This morning, after a quick breakfast with markferrari, calendula_witch and I headed back to Portland. She drove. We enjoyed the inexplicable and time-consuming twenty-mile traffic snarl north of Grand Mound, arrived home in time to collect the_child and head for the Scholes twins’ first birthday party, where more writerfolk were in attendance.

I am on the couch now, in peace and quiet at the Witchnest, and nearing a comatose state. Tomorrow I plan to move very slowly, and spend most of the day on writing and WRPA. For now, Hugo noms, a little reading, and then early sleep.

[links] Link salad contemplates the opposite of medical miracles

Fine-tuning Cancer TreatmentsDrug companies are harnessing new knowledge of cancer genetics.

Size matters — Asteroids, to scale. (Via Bad Astronomy.)

7 Wonders of the RV World — Americana at its finest. (Via e_bourne.)

The Lizard, the Catacombs, and the Clock: The Story of Paris’s Most Secret Underground Society — (Via shelly_rae.)

The American Aristocracy — On the repeal of the estate tax. Remember when the GOP was on and on about how family farms could be lost to the “death tax”, and Farm Bureau couldn’t find a single example of that happening? Yes, this is definitely another conservative win for the little guy.

Romney and Palin — Conservative commentator Daniel Larison on a likely GOP presidential primary contest.

Beck Subtext: Obama Planning to Assassinate Tea Partiers — Nothing to see here, citizen. Just politics as usual, being conducted by rational, principled persons.

GOP Reps Align with Muslim Nations Against Gay NGO — Wait, I thought the GOP tells us Muslims are the enemy? Anything to stop teh gay, I guess. How these people can sleep at night is beyond me.

?otD: What’s your worst medical experience?

Writing time yesterday: 3.25 hours (editing, WRPA)
Body movement: 30 minute stationary bicycle ride
Hours slept: 6.0 (interrupted)
This morning’s weigh-in: 234.2
Yesterday’s chemo stress index: 5/10 (fatigue, peripheral neuropathy, emotional turmoil)
Currently (re)reading: Heretics of Dune by Frank Herbert

[links] Link salad stares into the darkness of the future

John Klima reviews Is Anybody Out There? for

calendula_witch on my latest cancer diagnosisLikewise shelly_rae.

‘Inception’: Ghost Town, Ghost Faces — More on the movie from Hua Hsu, guest-blogging at Ta-Nehisi Coates’ joint.

35 movies in two minutes

Vintage Movie Poster: The Brain That Wouldn’t Die

Welcome to Detroit: 1900Shorpy with an image that includes one of the moon towers later appearing in Austin, TX, my former home.

Bye-Bye Batteries: Radio Waves as a Low-Power Source — (Via my Dad.)

?otD: Tumor or not tumor?

Writing time yesterday: 0.0 hours (derailed by medical science)
Body movement: n/a (PET scan prep requires low activity)
Hours slept: 6.25 (interrupted)
This morning’s weigh-in: n/a
Yesterday’s chemo stress index: 9/10 (fatigue, peripheral neuropathy, emotional turmoil)
Currently (re)reading: Heretics of Dune by Frank Herbert

[personal] Stuff and things

Nothing bad or emotionally wrenching happened yesterday on the cancer front. Lots and lots of writing and WRPA happened. Had a nice breakfast with H., had a nice Indian dinner with calendula_witch and jkoke, and shelly_rae 148 miles of the STP. Go wish her very well, indeed.

More writing today Hopefully more “nothing bad” as well. Tomorrow, the oncology consult to find out what the next three months of my future holds.

[cancer] CT or not CT, that is the question

CT, of course. ‘Tis definitely nobler to suffer the slings and arrows of outrageous medicine than to die of cancer. Yesterday’s scan was, well, a scan. Not much to tell until we get the results on Monday. and I were at the oncology clinic bright and early, where they set my port needle again and drew some blood, then down to the imaging center for the CT. After being NPO for several hours, even the contrast dye almost tasted good.

I will say the injectable dye is a slightly different experience through the chest port than through the arm. Though I might be confusion causality, this may have been a post-chemo thing. In addition to the usual places to feel the heat, I felt it in the back of my throat and in my hands — locations the peripheral neuropathy has manifested. Other than that, the whole business was quite routine.

dropped me off at home so I could go back to Day Jobbery, while she took care of some stuff, then came and spent the rest of the day with me once I got off work. I was (and to some degree still am) feeling emotionally fragile from scan stress, as well as other life stress. Her company and caregiving was much appreciated.

In other news, is riding the STP today and tomorrow. Drop by her blog and wish her well. It’s a big bite of the apple she’s taking, and I’m proud of her for doing it.

[writing] Project updates

4,200 words on the Sekrit Projekt yesterday, to 17,600. Not bad for a week’s work. I should wrap it today unless the story wants to be meaningfully longer than the projected wordcount.

Tomorrow or Thursday I will start in on extensive edits to Endurance, which I have about four weeks to complete, before I hie off to New Zealand and Australia. There will be minor interruptions for Sekrit Projekt revisions and a few related WRPA tasks, but essentially I’ll be on the novel every day until it is done and turned in.

Also on the burner, post-Endurance:

  • Finalize Kalimpura outline, turn in for editorial review
  • Revisions to “The Stars Do Not Lie” (steampunk lost colony religious novella), get out to market
  • Write short stories which have been bugging me, including the Sunspin short that is a riff on I Am Legend, the zombie-cancer apocalyptic horror story (with shelly_rae) and the cancer-as-a-hobby SF story.
  • First draft of Kalimpura

That should keep me busy through the end of October, at least. After that… Sunspin. And somewhere in the middle of Sunspin, a break for Kalimpura revisions.

All of the above assumes I remain out of the clutches of the medical establishment, of course. I’ve already lost about three months of this year’s writing schedule to cancer and chemotherapy, which in the final analysis is probably what I resent most about the whole process. If I lived to be 112, I wouldn’t have time to write everything I want. It would be damned embarrassing to die in my 40s, and I would feel so terribly short-changed.

[links] Link salad remembers spine-tingling railway sleepers

Big Painting Sale — Terry Windling is having a painting sale to help a relative meet medical costs. Check it, boost the signal. (Via shelly_rae.)

More on fried olives (for those who are following the saga) — garyomaha with more on the fried olives made by shelly_rae.

The milkman cometh — Back to the days of future past?

Trains And Railways Extravaganza, Part 2Dark Roasted Blend with some distinctly curious railroad images. A must-read for steampunks and railfans.

Time to Wake Up, Sleeper Spy — Can you ever really go home?

The Liberal Dilemma and Conservative Conflict — joshenglish takes on some cultural and political tropes. I largely agree with him.

The Poor Always PayAn Asian bank for low-income women is out to teach Wall Street a lesson. Those conservatives who think the poor are just lazy (there are a few in my extended family with that opinion) ought to try it for a while. Not college-student poor, but true poverty.

?otD: Would you, could you on a train?

Writing time yesterday: 2 hours (2,500 new words, plus extensive WRPA)
Body movement: stationary bike ride to come
Hours slept: 8.5 (decent)
This morning’s weigh-in: n/a
Yesterday’s chemo stress index: 2/10 (fatigue, peripheral neuropathy)
Currently (re)reading: Heretics of Dune by Frank Herbert

[cancer] Partying like it’s 2010, because who knows what tomorrow brings

shelly_rae is sleeping peacefully as I write this. I’m so glad she’s here. For the first time I’m not on the pump since January. (This would have been an infusion weekend, if I’d had another round.) calendula_witch, jkoke and karawynn were here yesterday sharing a nice Salvadoran dinner from El Palenque with me and the_child. And today, JayCon X.

I’m definitely coming out the other side of chemo. Not that isn’t a long, slow journey, but I can mark my progress almost daily. Last night over dinner I made a horrendously bad, quick-witted, literary dirty joke (well, pun, really). calendula_witch looked at me said, “Yep, you’re back.”

Some of the time, at least.

This party today is important to me. I survived. Again. A disease erupted from within my body, an inner assassin, a genetic error that has tried twice to kill me. I am still here. After leading an eremetic existence for these past months, seeing people I know and love, meeting online friends in person for the first time, and hopefully some totally new folks as well be both a practical reconnection to my social web and something of a ritual for me.

The reality is still pretty rough. Peripheral neuropathy continues to deepen. Fatigue is a constant companion. My GI still fights me more than it really should. But my mind is waking back up. And I feel a bit better every day. A bit more like myself.

We will know on the 19th if there are any further metastases established. We will know in late August if there are further colon polyps or candidate tumors. And we will never truly know if we have succeeded with this treatment, only that we continue not to fail. That’s my best case. But I’m running with it. And today I celebrate.