[links] Link salad rings a solstice bell or two
Dear Apple: Typography Still Matters — on justification, type, the iPad and Safari 5.0.
The origin of spoon theory (Thanks to for the link.)
Airship vs. A-bomb — Some fascinating photos…
Sunrise Solstice at Stonehenge — Another awesome APOD photo.
Aurora Australis Observed from the International Space Station — Mmmm.
Male Call with a WWII view of women — Very strange, this one.
Tea Parties Are For Little Girls — Politics, politics, politics.
?otD: How will you praise the not-so-distant sister sun?
6/21/2010
Writing time yesterday: 30 minutes of WRPA
Body movement: 30 minute stationary bike ride
Hours slept: 8.75 (fitful but rested)
This morning’s weigh-in: 226.0
Yesterday’s chemo stress index: 9/10 (infusion)
Currently (re)reading:
Wintersmith by Terry Pratchett
Tags: Cancer, Culture, health, Links, Personal, Photos, Politics, Publishing, Science
Posted: 4:52 am Mon June 21 2010 | Comments(0) |
[photos] Chemo infusion session 12, day 3 – the last unhooking
Undoing the needle.
The Bottle Ritual.
Session 12 is over.
Look, ma, no bottles! A pirate abides, though.
My (step)mother brought me a gift, her project from surgery through chemo.
and .
Me and me, immediately post-unhooking.
As usual, more at the Flickr set.
© 2006, 2010, Shelly Rae Clift, J.A.K. Lake, and Joseph E. Lake, Jr.
This work by Shelly Rae Clift, J.A.K. Lake, and Joseph E. Lake, Jr. is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.
Tags: Calendula, Cancer, family, health, Personal, Photos, shellyrae
Posted: 4:55 pm Sun June 20 2010 | Comments(2) |
[personal] Happy Father’s Day
To anyone who is a dad, has a dad, or dreams of being a dad. I love being ‘s father.
Tags: Child, family, Personal
Posted: 3:57 pm Sun June 20 2010 | Comments(1) |
[cancer] What the oncologist has said, coming off of chemo
We met with the oncologist prior to the twelfth infusion session, as we do. Blood chemistry showed white cell count still holding, but my neutrophil count is rather down. This is a precursor to a white cell crash, and if we were having a thirteenth session, it would probably have been postponed to allow me to recover somewhat. Nonetheless, the general consensus is that immune system has held up remarkably well.
We went through the series of prepared questions, which the oncologist seemed impressed with. Roughly in order, here’s what we’ve learned.
I will have quarterly CT scans as followup until I’ve been clear for a year. Then we will switch to semiannual scans, which will run up to the balance of five years, assuming there are no further metastases or other oncological events in the mean time. The first CT scan is scheduled for Friday, 7/16, along with bloodwork, with an oncology consultation for 7/19 to discuss the results.
PET scans will not be indicated unless spots are found on any round of CT scans, so I don’t foresee a return to nuclear medicine as part of the basic followup process.
With respect to the scanning process, I have elected to retain my chest port for at least a year. This means monthly visits to the infusion center to have the needle set and the port flushed. Where possible, I will time these to CT scans and bloodwork to minimize my trips to the clinic. As the port has sunk and tilted, it is possible that eventually the port will become physically inaccessible, though no one seems too concerned about this.
I will be returning to my colorectal surgeon for my colon followups, unless they elect to refer me elsewhere. I have written to ask for an appointment in early August. I expect these to be annual, as before, unless something unusual is discovered in the process.
My permission to resume ordinary physical activities, as well as travel, is “as tolerated.” This is what I expected to hear. Within two weeks I can stop considering myself immunocompromised, and within four weeks I can stop considering my bodily emissions (sweat, saliva, urine, feces, ejaculate, etc.) cytotoxic except for situations where pregnancy might be possible. (Which is to say, none in my case.) For those purpose, I am considered cytotoxic or three months.
Also within four weeks my bleeding risk tapers off, so I can return to the dentist and seek out my tattoo.
The peripheral neuropathy may continue to get worse, and could take up to two years to resolve. The oncologist doesn’t think it’s likely to be permanent in my case, but that is a possibility.
When I asked about my behaviors and self-monitoring going forward, given that the cancers have been largely invisible to me, her response was “exercise more, eat healthy.” I can get behind this.
There were a couple of parts of the conversation that were a little more difficult for me.
One, my CEA levels have gone sharply up in the last six months, tripling from their historical baseline since 2008. I am still within the normal range. CEA is loosely correlated with tumor growth, but not reliably so. In my case, my CEA levels stayed low through the entire primary cancer, which is an indicator that it’s not useful for inferring tumor growth in my system. As my colorectal surgeon said at the time, for some people it’s naturally low (me), for some people it’s naturally elevated, and for some people it’s correlated with tumor development. The oncologist is not concerned about the elevated levels, since it is still within norms. I find the trend line concerning, but am perfectly willing to believe this is a chemo artefact, especially given our prior experiences with the documented unreliability of the test for me personally.
The other part that has given me a lot of mental pause and emotional difficulty is the oncologist’s statement that in my situation there’s about a 40% chance of metastasis recurring. If I stay clean, this declines to 10% over the next three years, and somewhere lower than that but non-zero after five years, which is my baseline risk going forward. Let’s just say I wouldn’t bet money on 60% odds of success in the normal course of events.
I have to say that the prospect of the mental, emotional, lifestyle and financial costs of going through another round of deeper, harsher chemo is deeply challenging to me. As I do with everything, I will process this and work my around it, or through it, as needed. But I’ve really been struggling with this bit. As keeps being pointed out to me, 40% chance of recurrence is 60% chance of staying clean, which only improves with time. But the very idea of doing this again fills me with such pain and horror.
In connection with this, the oncologist said they didn’t think the age of onset indicated any unusual aggressiveness on the part of my cancer. She was a more vague about the meaning of a metastasis in a cancer which had been staged (incorrectly in retrospect) at Stage I.
So, basically, good news tinged with some fear and worry. And I know from statistics. Cancer is all about statistics — as a doctor friend who has much the same cancer history I do said, “Oncology is voodoo medicine.” It’s guesswork, statistics and idiosyncratic response. We’ll only know we didn’t succeed if we lose. I feel a bit like I have a shotgun duct-taped to my forehead, to misquote William Gibson. But that’s life, and I have to run with it.
Tags: Cancer, health, Personal
Posted: 9:09 am Sun June 20 2010 | Comments(13) |
[process] Writing Cliches of the Personal Kind
Author Shanna Germaine talks about her personal cliches in writing. It’s kind of a funny list. She covers both things she returns to a lot, and things which are absent in her writing. After eight novels and close to three hundred short stories, I’m not sure much of anything is absent from my writing, but I certainly do return to a lot of things. In no particular order, and off the top of my head, here are some of my tropes:
- Lost boys
- Absent fathers
- Absent mothers
- Frightening grandfathers/distant male authority figures
- Zeppelins
- Angels
- An absent God
- People angry at the world
- Talking animals
- Gentle humanism
- Reversal of gender roles
- The “key man” theory of history
- The price of magic/power/belief
- Place, place, place
- Self-discovery
- Personal responsibility
- The question of “who counts”
- And of course these days, cancer, cancer, cancer
What do you find in your work, over and over?
Snurched from Shanna Germain at Year of the Word.
Tags: Cancer, health, Personal, Process, Writing
Posted: 8:29 am Sun June 20 2010 | Comments(7) |
[photos] Your Sunday moment of zen
Your Sunday moment of zen.
Locomotive on static display, Yakima, WA. © 2006, 2010, Joseph E. Lake, Jr.
This work by Joseph E. Lake, Jr. is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.
Tags: Photos, trains, Washington, zen
Posted: 8:20 am Sun June 20 2010 | Comments(3) |
[links] Link salad thinks thoughts of mouse-and-apple pie
A review of Chtulhu’s Reign — Including a brief, positive reference to my piece, “Such Bright and Risen Madness in Our Names.”
Anonymous Doc on modern death — I feel like in the media, death-before-modern-medicine is romanticized, as if everyone died in his sleep, as if everyone had a peaceful and wonderful death back when we didn’t have medicine. You know what? They didn’t. People suffered. And in a lot of cases, they probably suffered much more than today.
It’s Complicated: David Souter finally tells Americans to grow up. — It saddens me to think that it took Justice Souter 19 years of heavy constitutional lifting and departure from the court before he could turn to the American people and explain clearly that much as we might want judging to be easy, it never can be. Constitutional originalism is like Biblical inerrancy. It must very comforting to avoid nuance in favor of strict absolutism.
Jon Stewart on Obama and executive authority — Really, Mr. President, we elected you to be better than the other guys. “Hope and change” doesn’t mean more of the same. Otherwise we may as well have President Palin and resign ourselves to the inevitable decline of American power, influence and economic strength under the same increasingly ideological, incompetent conservative misrule we’ve seen since Reagan.
Obama: Republicans blocking progress in Congress — President Barack Obama accused Republicans on Saturday of blocking bills that would boost the nation’s economic recovery and lift a $75 million cap on what oil companies must pay to families and small businesses affected by an oil spill. Is it an accusation when it’s true?
With No Gulf Solution in Sight, Louisiana Turns to Prayer — This is roughly the same group of people who don’t believe the government should regulate the oil industry. God is in a better position to do so?
First draft of history — An excellent chronicle by Sean Flynn in the July GQ of the events on and around the Deepwater Horizon just before and just after the explosion. From The Edge of the American West.
What Shakedown — Conservative commentator Daniel Larison on the BP “shakedown”.
?otD: When do the mouse police ever sleep?
6/20/2010
Writing time yesterday: n/a
Body movement: brief suburban walk later
Hours slept: 10.0 (interrupted)
This morning’s weigh-in: 231.2
Yesterday’s chemo stress index: 9/10 (infusion)
Currently (re)reading:
Wintersmith by Terry Pratchett
Tags: healthcare, Links, oil, Personal, Politics, reviews, stories
Posted: 8:17 am Sun June 20 2010 | Comments(1) |
[photos] Infusion session twelve, day one
One of the cakes, this one made by the .
Fanmail from some flounder.
Dad.
Me.
As usual, more at the Flickr set.
© 2010 Shelly Rae Clift
This work by Shelly Rae Clift is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.
Tags: Cancer, family, health, Personal, Photos
Posted: 8:23 am Sat June 19 2010 | Comments(3) |
[conventions|repost] JayCon X
Mark your calendars now. In celebration of my natal anniversary, JayCon X, my 10th annual 37th birthday party, will be Saturday, July 3rd, from 2 to 5 pm at the Flying Pie in SE Portland. (That’s two weeks from today.) Come help me celebrate both my birthday and my successful completion of six months of chemotherapy in late June.
We’re partying because I was born, and because I will have beat cancer. Again.
Flying Pie Pizzeria
7804 SE Stark Street
Portland, 97215
(503) 254-2016
http://www.flying-pie.com/
[ Google Maps ]
As is traditional for JayCon, Paul Carpentier is specifically not invited.
Tags: Cancer, Conventions, JayCon, Personal, Portland, Repost
Posted: 8:10 am Sat June 19 2010 | Comments(2) |
[cancer] Infusion session twelve, day one
Well, that was my last trip to the infusion center for this round of chemo. Due to my decision to keep the port in my chest, I’ll be back in there quite a bit in the coming months, but not to be pumped full of cytotoxins and corticosteroids. Thank Ghu.
We had cakes baked by and the Niece (under grandmotherly supervision) to thank the staff, and share with the other patients. Anyone who’s ever been to JayCon has probably enjoyed this cake, basically devil’s food covered with a thick layer of fudge icing. I brought a card, and copies of The Specific Gravity of Grief for my oncologist and for the reading shelf in the infusion center. The lead PA promptly absconded with that second copy, which made me happy. (My therapist said he’d never read anything like it. I chose to take that as a compliment.) Photos to come once Twitter and I reach detente on the upload process.
The infusion itself was pretty rough by the end, and I’m really wiped out today. During our consultation with the oncologist, we asked a lot of questions. Some of the answers were encouraging, some were damned sobering. I’ll make a post about all that in detail once I’ve had a bit more chance to process, and discuss with and . Let’s just say my fears are in no wise laid to rest.
Next steps for me are bloodwork and a CT scan on July 16th, followed by an oncology consultation on July 19th. I’ll have a colonoscopy in early August as well. For now, I have another day and a half on the pump, with all the joy and pain that entails.
Chemo bottle ritual for the last time on Sunday.
Tags: Calendula, Cancer, family, Food, health, Personal, shellyrae
Posted: 8:08 am Sat June 19 2010 | Comments(1) |
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