January 8th, 2010

a-links

[links] Link salad walks through a door that never opens twice

Don't miss the announcement of JayCon X [ jlake.com | LiveJournal ] — My 10th annual 37th birthday party, plus my end-of-chemo celebration, next July.

My chemo ritual: [ jlake.com | LiveJournal ]

alumiere on the costs of healthcare — This follows my post of yesterday [ jlake.com | LiveJournal ], and her situation is much starker than mine, even with "good" insurance. So, again, all you people who think the current system is "the best there is", walk a mile in our shoes, mmm? Then tell me that again.

maryrobinette with an interesting post (and discussion in comments) on breaking in through short fiction vs novels — I especially like comment 6.

More on eBook rights and costs from Andrew Wheeker

Two Gentlemen of Lebowski — Shakespeare-Coen brothers mashup. :: dies laughing :: (Via @jeremiahtolbert.)

From Flat to Flight — A very cute art video. (Via Drawn!.)

Missed vaccines weaken 'herd immunity' in children — The antivax movement is child abuse, public endangerment, and profound selfishness, all rolled into one. More here, in related news.

Brit Hume: 'Jesus Christ' the 'Most Controversial Two Words You Can Ever Utter in the Public Square' Today — As majoritarian conservatives like to do, he plays the victim card. Which is absolutely ridiculous given the profound privileging of Christianity in our social, cultural and political discourse. (Via AmericaBlog.)

Obama on terrorismDaily Kos TV with a brilliant dissection, from primary sources, of a typical (and successful) Republican lie supported and propagated by Your Liberal Media. If you believe Obama has avoided using the word "terrorism", go watch this. (For whatever it's worth, I presume that most of the GOP talking heads aren't explicitly aware they're lying. They just don't fact check their own side's talking points. And this crap plays well on soundbite TV, while the truth has a much harder job entering voters' heads, so there's no incentive for conservative figures to get it right.)

?otD: Do you know any songs from the big chair?




1/8/2009
Body movement: 60 minute suburban walk (forthcoming)
Hours slept: 6.0
This morning's weigh-in: 230.6
Currently reading: Bangkok 8 by John Burdett

cancer-scars

[cancer] The dawn of infusion day, the first of twelve

Today is my first infusion day. Though I have some idea what to expect in terms of schedule and activities, thanks to the chemo orientation class we took last month, I don't really know what to expect in terms of my own personal experience — somatically, emotionally, and so on. I will find out as I go. If practical, I will tweet and liveblog the festivities, in keeping with my general policy of oversharing in matters personal and healthwise.

shelly_rae, calendula_witch and I are going walking shortly. One last dose of normalcy. Plus I like walking for a bunch of reasons. When I'm alone, it's very meditative. When I'm with one or both of them, it is some of our best talk time.

I'm calm this morning, so far. This is a metastability rather than true peace. I suspect a broken shoelace would send me either into a rage or desperate tears. Stress is an amazing thing. But here I am, neither in denial nor angry. Acceptance isn't the right word, though. My frame of mind is more determined and grudging than that. I will own this, it will not own me; but in some significant ways, chemotherapy will be the hardest thing I have ever done.

My life is filled with love and support beyond reasonable measure. I have my family, especially the_child, calendula_witch and shelly_rae and many other immediate or intimate frienss around the world, a much wider circle of professional and social friends, acquaintances, fans and connections. Like I've said before, if love could cure cancer, I'd be the healthiest son of a bitch in North America.

But now I must walk through a door I'd never have chosen, to a place I cannot come back from. All I can do is go forward. I have my love and my rituals; my family and my friends; my camera and my keyboard. With these tools I shall walk on. Someday I shall once more walk free.

cancer-do-not-want

[cancer] Chemotherapy, the first couple of hours

I'm at the infusion center with calendula_witch and shelly_rae.

jay_infusion_01

As I began this post, there had been no big drugs. I've had my needle inserted in the port, blood and urine samples tested (everything was fine), seen the oncologist, and been loitering in this big chair for about forty-five minutes while the pharmacist does pharmacist things. My list of take home medications, for side effect management, is enormous. I've already taken a scattering of pills here that were colored like Lucky Charms, though they didn't come in stars, moons and diamond shapes.

Since then they've come along and given me saline, then Avastin, and now a cocktail of magnesium and potassium to prepare me for the Oxaliplatin. (Those help defer the peripheral neuropathy which is a side effect of Oxaliplatin.)

Mostly this is boring. The terrors are internal — the infusion center is pleasant, the staff are cheerful, and my support team is largely futzing with their computers. I did receive a pleasant hand massage while the drugs were being hooked up, so I told the nurse it was just like college: being rubbed on by one gal while another one gave me drugs. lillypond has just dropped by, while shelly_rae has given me a wind-up crab and a couple of spoons. (pnh and tnh recently mailed me a lovely silver spoon from Brooklyn. I sense a trend developing.)

More as it develops, but things are going well. The real issue, of course, is the side effects, and those aren't happening yet.

cancer-do-not-want

[cancer] Chemotherapy: Leucovorin, Oxaliplatin, and spoons

I am now on a two hour drip of Leucovorin and Oxaliplatin. The Leucovorin is a vitamin complex that improves the uptake and effectiveness of the Oxaliplatin. Meanwhile, bordedom was staved off by the arrival of lillypond (a/k/a my sister) and the presentation by shelly_rae and calendula_witch of several dozen spoons sent along by friends and well-wishers from many places around the country and the world. We read a number of funny, moving and thoughtful notes, and marveled at the variety of spoons that made their way to my lap.

(Photos to follow soon, of course.)

I am touched. Moved. Overwhelmed. You guys are made of unalloyed, high-tensile awesome.

cancer-do-not-want

[cancer] Done at the infusion center

Arrived a little before 9. Done a little after 2. I am now feeling vaguely ill and out of sorts, with considerable skin pricking and some mild disorientation. Just received a substantial bolus of 5FU, and am now carrying the infusion pump to go home with until Sunday afternoon. Pharmacist has oriented me on the constellation of takehome drugs for side effect control.

Leaving shortly for the pharmacy, home, and horizontalness.

cancer-scars

[cancer] Chemotherapy, wrap up on day one of session one

So, after multiple posts in the course of the day, a wrap up on the first infusion session. (Chemo is not over til Sunday afternoon, when calendula_witch and shelly_rae remove my takehome infusion pump.) Much of my confusion and mental wooziness has cleared, though I continue physically very flattened out.

When we first arrived and my needle was set in my chest port, the Nurse Practitioner trained calendula_witch and shelly_rae in how to unhook the pump, cleanse the port (saline and heparin injections) and then extract the needle. That was interesting.

Day was far less upsetting and disruptive than I expected. The last couple of hours were rather a journey into a mental fog, coupled with a sharp drop in my physical well-being. Mostly, though, it was boring; or would have been except for the presence of my loved ones and family. And the spoons.

More spoons came with tillyjane, collected from friends and family. Combined with the ones presented by shelly_rae, there must be forty or fifty. You guys are so awesome. That was hilariously funny. And some of the notes were quite touching. I have family heirlooms, historical and antique spoons, medically significant spoons, deeply humorous spoons. I'm still too stoned on chemo to do any kind of a job of thanking people by name, but I will try tomorrow if I can.

After we left, we swung by the pharmacy to pick up my prescriptions. Trouble ensued, as TV Guide likes to say. Only the first of my five or six scrips from the chemo team had gone through. Multiple phone calls later, and some serious Heroism of the Revolution on the part of my pharmacist, and I headed home with a sack full of brightly colored pills.

Home now, we have a fridge full of food most generously delivered this week by newroticgirl and biomekanic. I will be on a very slow dose of 5FU until Sunday afternoon, so I am expecting to lay quite low these next two days, and be massively unproductive. It's like a vacation, except for confusion and nausea! Ok, it's like a drunken vacation! (I had one of those in New Orleans when I was in college.)

For now, I am going to mellow my way through the evening with calendula_witch and shelly_rae. Enjoy yours. I'll update tomorrow as energy and health permit.
funny-buddahomer

[cancer|funny] Things my addled brain forgot in the day's wrap up

shelly_rae gave me a very cute chemo crab toy, which baffled my parents.

The PA was confused by the relationship between me, calendula_witch and shelly_rae. He was even more confused by my father's otherwise unexplained appearance with my two moms. NB: We are not Mormon.

calendula_witch found my missing keys!!! Yay!!!

calendula_witch's bon mot of the day: "Important safety tip. Don't try to be funny on chemo. It makes other people nauseated."

My bon mot of the day: "Oh. Now I have le infuser chemotherapie avec fromage."

shelly_rae's bon mot of the day: "Do you need a spoon?"

Thank you, thank you we'll be here all weekend.