March 19th, 2013


[links] Link salad has smoker's hack without ever smoking

A Cancer Gene Therapy Activated by a Pill — This is not directly relevant to my disease, but it's still cool as heck.

Oklahoma Woman Proof That Youth Should Not Preclude Breast Cancer Screening — Me, too. I was 43 when I presented with fully developed colon cancer. I couldn't have gotten screened if I'd known to beg for it, as screenings for my kind of cancer aren't indicated for patients under 50, and so not covered by health insurance and not prescribed by most doctors.

We Aren’t the WorldJoe Henrich and his colleagues are shaking the foundations of psychology and economics—and hoping to change the way social scientists think about human behavior and culture.

Depression Stems from Miscommunication Between Brain Cells; Study Challenges Role of Serotonin in Depression

An Unlikely Plan to Revive the Passenger PigeonAdvances in genetic engineering have some biologists convinced they’ll re-create extinct species.

Who Made That Cellphone? — Ah, history. (Thank to Dad.)

Self-Healing Circuits for Deep Space — Huh. Wow.

Railroad Pageant: 1939 — Mmm, steam.

How Far Did She Fall? The Amazing Story of Vesna Vulović — I've read about this before. (Via David Goldman.)

A warmer planet means bigger hurricane surgesNot just in the future—the impact is already significant, a new study argues. Amazing, how liberal lies have affected even the behavior of the ocean itself. Thank God for Rush Limbaugh and the Republican party, otherwise those climate "facts" and "data" might have had some effect on US policy by now.

In Some States, Gun Rights Trump Orders of ProtectionThe judge’s order prohibited Mr. Holten from going within two blocks of his former wife’s home and imposed a number of other restrictions. What it did not require him to do was surrender his guns. About 12 hours after he was served with the order, Mr. Holten was lying in wait when his former wife returned home from a date with their two children in tow. Yep, I definitely feel safer with gun rights so thoroughly protected. Don't you? If you're a gun culture person, why is this all right with you? (Via Marta Murvosh.)

What we Lost: Top Ten Ways the Iraq War Harmed the US — This is what conservative leadership and ideals brought us.

QotD?: Cough much?

Writing time yesterday: 1.5 hours (WRPA, working on Whole Genome Sequencing presentation)
Hours slept: 9.0 hours (solid)
Body movement: 0.5 hours stationary bike
Weight: 240.0
Number of FEMA troops on my block building solar arrays to undermine the American fossil fuel industry: 0
Currently reading: Lords and Ladies by Terry Pratchett


[cancer] Field Notes from Cancerland, I habe a code in my node edition

Vectibix + Doxycycline

Have I mentioned how much this drug combination sucks? I'm already in full sun-aversion mode. My entire head itches as if it were one great, big pimple. My nose looks like a battlefield. To combat this, I am taking Claritin twice a day, and baking soda baths in the evening. A friend is even bringing baking soda to ICFA for me, as I don't want to travel with boxes of white powder in my luggage, things being what they are in the security theater business these days. Oddly, when I wrote my doctor and asked for a note explaining that I needed to keep my face covered from sunlight for health reasons, I got a nurse reply that advised me to wear a hat and use sunscreen. Which is idiotic. We already know I am waaay out on the response bell curve when it comes to photosensitivity, and I have months of experience with this drug combination. Sunscreen plus a hat doesn't even come close. And yes, I'm going to Orlando tomorrow. Because I am that kind of idiot.

Whole Genome Sequencing

Last week, Dad and I had a conference call with the chief scientist of the company handling the clinical analysis of my whole genome sequencing. It was an intermediate status update, with nothing actionable for us, but gave a lot of detail about how they processed the close to a full terabyte of raw sequencing data, and where they're going with it. We're looking at least a couple of more weeks down the road for a clinical report that might lead to some treatment changes. On the plus side, I learned that tumors have gender. My tumors have Y chromosomes, at any rate. Which makes perfect sense, but I'd never thought about it.

Talking About Whole Genome Sequencing

Yesterday I finished the first draft of the slideware for next week's Nerd Nite presentation on whole genome sequencing. This is of course from the patient point of view, as I am neither a scientist nor a physician. It was interesting to frame just the basic inside a 25-minute talk time. I didn't even touch on a lot of the weirder or more technical stuff. Presentation is off to the moderator for review and editorial input. Likewise, today I'll be talking to Theral Timpson of Mendelspod about the patient experience, and I'm providing material for a forthcoming Japanese-language article about my sequencing and the outcomes it has and will generate.

The Manifest Injustice of Illness

On top of everything else, I've managed to come down with a dreadful chest cold. This just after getting over a lingering mild head cold. There's a manifest injustice to being sick while you're sick, but I don't suppose there's anything about cancer that confers immunity to passing infections. I slept through most of last Saturday's dinner, missed the St. Patrick's Day party completely, and am still waffling on going to Florida tomorrow, though at this point I believe I will make the trip. Still, I'm dealing with so much, and now this. Really, universe?


Continuing with the mortality fears and thoughts. Not overwhelming, not consistent, but fundamentally I'm still processing January's news that I'm incurable. I did a graph for the whole genome sequencing presentation which pretty much tells the story:

incidence of tumors

The Y axis is number of tumors, the X axis is the time of recurrence. I entitled the slide, "Holy Shit, I'm Going to Die!" On account of cancer rarely trends in reverse.

So, yeah, mortality.


[conventions|repost] Announcing JayCon XIII

Every year, some people tell me that I need to announce JayCon early so they can get it in on their calendars. Every year, some people tell me I need to announce JayCon later, because they don't plan that far ahead. Sometimes, these are the same people. So starting now, and going on through the spring, I will be reposting this announcement with occasional edits or updates as needed.

In celebration of my natal anniversary, JayCon XIII, my 13th annual 37th birthday party, is Saturday, June 15th, 2013 from 2 to 5 pm at the Flying Pie in SE Portland. We're partying because I was born, and because I have beat cancer again and again and again.

If you can read this, you're invited. Prior JayCon experience not required.

Also, if you're coming from out of town, and you think I might not be aware of that, please contact me. There are some limited capacity extended festivities from Friday to Sunday.

Flying Pie Pizzeria
7804 SE Stark Street
Portland, 97215
(503) 254-2016
[ Google Maps ]

As is traditional for JayCon, Paul M. Carpentier is specifically not invited.