Jay Lake: Writer

[conventions] Arriving at Gaslight Gathering

Yesterday, the_child, Lisa Costello and I flew to San Diego to attend Gaslight Gathering, where I am Guest of Honor this weekend. We were graciously met at the airport, then ferried out to Illumina for me to give a talk on cancer and genomics, then brought to the convention hotel and released into the wild for the evening.

I am meeting this morning with Gaslight Gathering’s guest liaison to go over my schedule for the weekend. Specifically the auction on Sunday is going to be an interesting challenge. They have put it together as a benefit for me, and some of the donations have been impressive and humbling. I’ll say more about this when the time comes. I’ll be around all weekend, so if you’re at the convention I should be easy to find.

My philosophy about being a GoH is that my time belongs to the convention. Even so, there will be a little extracurricular visiting while I’m here. Tomorrow morning, my friends from the League of S.T.E.A.M. are coming down from Los Angeles to have breakfast with me. Sunday evening I’m having dinner with @gregvaneekhout. Monday I’m mostly chilling until I fly back to Portland that afternoon. So if you’re in the San Diego area and want to connect, let me know. We can probably work something out.

Meanwhile, I plan to have a heck of a lot of fun here. I know they have some surprises in store for me, but I do not know what those are. (Because they wouldn’t be surprises then, would they?) More to come…

Tags: California, Child, Conventions, friends, radiantlisa, steampunk

Posted: 6:37 am Fri May 03 2013 | Comments(13) |

[cancer|events] Giving a talk on cancer and genomics at Illumina

Yesterday, thanks to the good offices of Waterloo Production and Gaslight Gathering, I visited Illumina to give my talk about the patient-oriented view of cancer and genomics. I was accompanied by the_child, Lisa Costello and K— from Gaslight Gathering. Waterloo Productions filmed the event.

The lobby of Illumina

This was an intimidating audience for me. I’m a pretty well-informed layman, but I am definitely a layman. I have a B.A. Plan II from the University of Texas at Austin, which is loosely speaking a humanities degree. I have no graduate education. I haven’t darkened the door of science classroom since about 1984. With these credentials, I was talking to an audience of people who work every day on genomics, on whole genome sequencing and bioinformatics. Doctors, scientists, lab techs, marketers, administrators: a whole gamut of people from the world’s leading provider of gene sequencing equipment and services. I knew going in I had to be on my toes to maintain credibility and give them useful value for the hour of time each busy member of my audience was going to invest in me.

Jay talking at Illumina © 2013 Waterloo Productions

About 60-80 people attended the talk, by my rough guess. No one walked out in the middle, which to my long experience in public speaking and business presentations definitely represents a win. They were a tough but receptive house with some good questions. (My favorite was one about whether Illumina should be engaged in patient education or provider education, along with a related question about how to go about those efforts.) I learned some interesting thing from the questions and comments, and I think I reached a number of people with the patient perspective on the work they do.

I call it an afternoon well-spent. I daresay the Illumina folks do as well. When Waterloo Productions has the video of the talk edited, I think we’ll publish and promote it. At some point in the near future, I’ll also find a way to publish the slideware.

In addition, I’m trying to line up to do this talk to other audiences, both biomedical and general interest. If you know of any group who would like to hear more, please put me in touch.

Photos © 2013 Waterloo Productions and Joseph E. Lake, Jr.

Waterloo Productions’ photography is reproduced with permission, all rights reserved.

This work by Joseph E. Lake, Jr. is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.

Tags: California, Cancer, Child, Conventions, health, Personal, radiantlisa

Posted: 6:28 am Fri May 03 2013 | Comments(9) |

[travel|conventions] Off to San Diego and Gaslight Gathering

In a couple of hours, Lisa Costello, the_child, and I are off to the airport to fly to San Diego for Gaslight Gathering. Those fine folks have invited me to be their Guest of Honor. How could I say no?

This afternoon when we arrive, we’ll be visiting Illumina, the company that performed the primary analysis for my Whole Genome Sequencing. There I will give my talk on cancer and genomics from the patient perspective. After that, we’ll be the whole weekend at the convention.

The Gaslight Gathering folks have been incredibly kind and generous, offering me all sorts of support. I cannot thank them enough for the invitation, and very much look forward to spending the weekend with that crew. If you’re in southern California, especially San Diego, drop in and see me.

Tags: California, Cancer, Child, Conventions, events, health, radiantlisa, steampunk, Travel

Posted: 6:27 am Thu May 02 2013 | Comments(21) |

[cancer] The to do list of the ill and dying

Yesterday over lunch, Lisa Costello and I spent some time going over to-dos for me as I grow more ill and transition into the dying process. Then we met Team E. for dinner at the excellent Al-Amir Lebanese restaurant in SW Portland, where we went over this again in greater detail. Even if I get an unexpected reprieve next week, these issues will apply soon enough.

I divided the process into a number of event-based stages. These can’t really be date-based, because we won’t know until we get there when certain things happen. These stages are:

• Now
• Terminal Diagnosis
• Leaving Work for Disability
• Reaching the Point of Cognitive Incompetence
• Hospice / Palliative Care
• Death

These are in rough chronological order, though there may be overlap between various stages. Within each, I’ve listed all the things the four of us could think of that need to be dealt with, and who will do the dealing with. (Slightly redacted for privacy and business confidentiality.) The line items aren’t in any particular order at the moment, though they may acquire ordering in my tracking spreadsheet as this all progresses. Some of the line items are obvious and self-explanatory, others could unpack into entire blog posts of their own. For now, this is what I have.

This is a sobering and depressing process. But being prepared now will make the later stages of my death much, much easier on everyone involved, at least from a logistical perspective. By then we should be focused on emotions and relationships, not how the heck the gas bill is going to be paid.

Now
Transfer utilities into Mother of the Child’s name	Jay
Transfer/confirm car titles into Mother of the Child’s name	Jay, Mother of the Child
Discuss transition to literary trust with attorney – PO Box, phone, bank account etc.	Jay, Dad, attorney, John P.
Put Lisa on writing account, PO Box, other paperwork TBD(?)	Jay, Lisa
Confirm with attorney how mortgage and house title are handled post-mortem with Mother of the Child, seek additional paperwork as required	Jay, Mother of the Child, attorney, Dad
Make written plans for future transition steps, especially with regard to treatment decisions in mid- to late-stage decline	Jay
See accountant re tax planning for FY 2013 and (if required) FY 2014	Jay, Dad, Mother of the Child (?)
Define memorial gifts desired	Jay
Letters and videos for the_child, video for memorial	Jay, Donnie
House inventory – who gets what, consult family	Jay, Lisa, others
Basement clean-and-purge	Jay, Lisa, others
Investigate COBRA and post-mortem health insurance options for Mother of the Child and the_child	Dad
Revisit question of my two disability policies, presumably with disability lawyer	Jay, Dad
Title Audit	Jay, Dad
Post-mortem humor	Jay
Terminal Diagnosis
Plan and execute premortem wake	Jay, Team E., Lisa
Finalize writing projects, collaborators, et cetera	Jay, John P.
Discussions with the_child?	Jay, Mother of the Child, Lisa
Arrange cadaver donation to medical school	Jay
Plan memorial ceremony, including music	Jay, Mother of the Child, Lisa
Arrange family therapy and grief counseling	Jay, Mother of the Child
Post mortem financial planning	Jay, Mother of the Child, Dad
Arrange support group for Jay, possibly for the_child, possibly for caregivers and family	Jay, others
Leaving Work for Disability
Pay off all debts except mortgage using insurance loan	Jay, Dad
Shop for new, competitive high speed Internet service, place in Mother of the Child’s name	Jay, Dad
Transition cellular account (specifically my number) from Day Jobbe to my account	Jay, Dad
Determine how cellular account will be handled post-mortem	Jay, Dad
Benefits transfer at work	Jay, Dad
Arrange for life insurance loan at bank	Jay, Mother of the Child, Dad
Arrange minor home repairs using insurance loan	Jay, Team E.
Transfer air miles	Jay
Reaching the Point of Cognitive Incompetence
Take me off car insurance, make sure billing is in Mother of the Child’s name to ease post-mortem transition	Mother of the Child, Dad
Confirm treatment decisions	Mother of the Child, Lisa, Dad
Transition to literary trust	Dad, John P.
Are there powers of attorney to be executed? My attorney is very cagey about this	attorney, Dad
tillyjane to move into my house	tillyjane
Hospice / Palliative Care
Execute plan for death at home vs. hospice or hospital facility	Jay, primary care physician
Death
Life insurance payouts	Dad, Mother of the Child
Pay off mortgage	Dad, Mother of the Child
Memorial gifts (from Mother of the Child and the estate rather than directly from me)	Dad, Mother of the Child
Execute will	Dad, Mother of the Child
Finalize Jay’s affaris with health insurance and hospital	Dad, Mother of the Child
Transition Mother of the Child and the_child to something other than COBRA	Dad, Mother of the Child
Apply to Social Security for survivor benefits for Mother of the Child and the_child	Dad, Mother of the Child
tillyjane to remain at my house for transitional period	tillyjane

As always, suggestions and comments are invited. Also as always, permission to republish with attribution is granted.

Tags: Cancer, Child, Family, friends, health, Personal, radiantlisa

Posted: 5:31 am Wed May 01 2013 | Comments(24) |

[personal|writing] Being busy

I am busy these days. Working under a mortal deadline is wonderfully clarifying to the mind. Even if I am wrong about the immediate future, I am not wrong about the general trend of my disease, so the things I am trying to do right now apply regardless.

As mentioned recently, I have temporarily suspended work on Original Destiny, Manifest Sin to grod around closely inside of METAtropolis: Green Space. In the past three or four days I have done a close read on stories by Karl Schroeder and Elizabeth Bear. Today I’ll dive back into Ken Scholes‘ story. Editorial work is very different from writing a first draft, but they come out of the same general space in my brain. Each has its joys. I’m committing a minimum of one hour per day to this task.

There is also an ongoing project to simplify the holdings here at Nuevo Rancho Lake. Hence the recent Basement Party, and future such in late May and through June, most likely. I have committed at least half an hour per day (though yesterday it wound up being more like two hours) to advancing that ball. Lately that has been a lot of sorting through receipts, files and paperwork to determine what needs to kept for tax purposes, and what can be disposed of. Also, walking through my large and essentially random pile of CDs, CD-Rs and DVD-Rs to make sure whatever is on them has been captured either into iTunes or into my photo files as appropriate. Later there will be larger scale decisions about the disposition of books, clothing, furniture, art, et cetera. I’d rather I do these things now than someone else have to puzzle through them after I’m gone.

Plus Day Jobbery, parenting, relationship time with Lisa Costello, keeping up with friends and family, forthcoming travel, and so forth. So, yes, I am being busy.

Tags: Books, Cancer, Child, Family, friends, health, META3, ODMS, Original Destiny, Personal, radiantlisa, Writing

Posted: 5:49 am Tue April 30 2013 | Comments(16) |

[dreams|cancer] Voyaging in the undiscovered countries of my heart

I had one of my science fiction dreams again last night. I was flying on a 747 with some other writers. Gardner Dozois was the flight attendant, and did about what you’d expect Gardner to do in that situation. His safety spiel over the p.a. system was more along the lines of “Keep your hands and arms inside the ride at all times,” which is not comforting to hear aboard a pressurized aircraft.

The plane eventually landed at the World’s Tiniest Airport™, an artefact of the geography of my subsconscious rather than any particular airport in real life. I walked alone down the airstairs and into the terminal to find the departure lounge crowded with science fiction writers, artists, critics and fans. Jenn Reese, Greg van Eekhout, and Sydney Duncan, just to name a few. Plus most of the Pacific Northwest genre community. I stopped to talk to them, but they were all leaving on Gardner’s plane. I begged people to stay a while longer, or to take me with them, but the plane was full and the place was emptying out. Soon I was left behind alone.

Later I dreamt I was in China with my family. Except they had checked into one hotel and I was supposed to be in another. I went to a store to get a few groceries, and became frustrated that they did not have Mexican Coke in China. The checker turned out to have been educated in America, and fluent in English, so after the store closed we went out to watch the Communist youth groups in their midnight parades. We started making out, then she went off to do something, and I found myself stark naked on the nighttime streets with nothing to clothe myself but Communist party banners. This seemed like a bad idea.

I am dreaming of my own death, clearly. And separation from two of things which matter most to me. the_child, whose heritage is Chinese; and the genre community in which I have become so deeply embedded. My sense of loss is palpable even in my day-to-day moments, and the dreams underscore a deep sense of abandonment.

That last is a tad odd, as it is I who is doing the abandoning by contracting a fatal illness. Nonetheless, this is how my dreaming mind has chosen to interpret the matter somewhere beyond the Gates of Horn. The country of my dreams is treacherous terrain, but no more so than the country of my waking life these days.

Tags: Cancer, Child, China, dreams, Family, friends, health, Personal, Publishing, Travel

Posted: 5:40 am Tue April 30 2013 | Comments(14) |

[cancer] Today is the fifth anniversary of my cancer

Today is the fifth anniversary of my cancer.

To be more accurate, it is the fifth anniversary of me presenting at the emergency room with symptoms that led to my diagnosis on May 1st, 2008 [ jlake.com | LiveJournal ].

It’s been a long, hard road since then. Given what we learned this past January about me being considered incurable [ jlake.com | LiveJournal ], the road ahead is considerably shorter than the road behind. My CT scan and oncology consult next week are quite likely to produce my terminal diagnosis.

Time and again the sheer existential horror of this catches up to me. It tugs at my attention, stills my heart for a beat or two, and gnaws at my soul. But every day I am alive is another day. Every day with the_child, with Lisa Costello, with my family, with everyone who knows and loves me is another day.

Still, I am sick and tired of being sick and tired. It’s just that the path I’m on right now wasn’t the outcome I was hoping for. I’ve spent more than 10% of my life being ill, a third of the_child‘s life. I will spend 100% of the rest of my life being ill, and that will always be her memory of me. As she said recently in a related context, “I never wanted it to be this way.”

I hate this disease. I love the world, I love life, but I hate what cancer has done to me and everyone around me.

Happy anniversary.

Tags: Cancer, Child, Family, friends, health, Personal, radiantlisa

Posted: 6:48 am Sun April 28 2013 | Comments(19) |

[cancer] Field notes from Cancerland, (almost) anniversary edition

Anniversaries and Getaways

This Sunday, April 28th, is the fifth anniversary of my initial presentation with primary colon cancer. That’s five years I’ve been living with Stage IV cancer. As it happens, Lisa Costello and I are going away this weekend to spend some time alone together. Given the schedule over the next two weeks and the likely outcomes of my forthcoming oncology consult on May 8th, this is almost certainly the last time we will ever be able to do so with me in any sort of health. (Even that is a relative statement.) I am having a cancerversary party with family and close friends, but not until mid-May, simply due to scheduling issues. So, for whatever it’s worth, the day that changed my life forever is about to marked again.

Listening to the Children of the Night

Last night, Mother of the Child, Lisa, and I went to the annual spring concert of the_child‘s school. She is a Waldorf kid, so the array of musical talent on display is pretty amazing. It was nice to be out in the evening, even if my foot was absolutely killing me. Plus I had some pretty wrenching emotional reactions to being among all those kids. A weird intersection of mortality, pain and self-reflection, most of it fairly serious off-kilter. I left the concert with the feeling that I had wasted my life. This is a laughable assertion, both objectively and subjectively, but still. I’m glad I went, and it was great to hear her sing, but the emotional terrain was peculiar. To say the least.

My Foot

Speaking of pain, my foot continues pretty unhappy. It’s been over a week, and I am improving noticeably, but I am also still walking with a cane. I’m at that stage of recovery where things can feel okay long enough for me to forget what I’m about and do something stupid. Also, I’ve noticed the vibe out in public when you’re moving slowly and with a cane is very different. Plus it’s hard to pull off a flirty smile when your face is covered against the sun and you’re leaning on a cane. You become socially invisible in some very specific ways.

Virtual Jay

The inestimable jackwilliambell has taken the first steps on the Virtual Jay project discussed yesterday. He has set up a project in GitHub, with the intention of transitioning it to a group project if there’s sufficient interest and activity. Drop in and contribute, if you’re so inclined.

Open Sourcing my Genome

The biggest challenge appears to be finding a robust and persistent host for the master copy of my genomic sequencing. This requires about 500MB of long term storage (or about 1GB if I also publish my tumor genome), along with the bandwidth to support access. I don’t think jlake.com is up to the task, and it’s not clear to me in any case how long the account will be maintained after my death. Any thoughts?

CPT Coding for Whole Genome Sequencing

Thank you for all the discussion and ideas yesterday, both in the blog comments sections and via direct message and email to me. The consensus appears to be that no one is certain whether there is a CPT code for a whole genome sequencing — lots of answers for partial and for other specific aspects. The best solution appears to be find a lab that does it, bills it to insurance and is willing to talk to either me or my father. Can anyone suggest someone to talk to?

Tags: Cancer, Child, health, Personal, radiantlisa

Posted: 5:39 am Fri April 26 2013 | Comments(9) |

[cancer] Field notes from Cancerland, blood and sunlight edition

Blood Chemistry

My bloodwork from Monday’s oncology visit indicated elevated sodium and depressed magnesium. We’re not clear on why I would show elevated sodium, except as possibly an accident of diet over the preceding weekend. The magnesium depletion is a known side effect of Vectibix. Though I’m already taking a magnesium supplement, I now have to double that up. Since magnesium, like calcium, is contraindicated with my Doxycycline, I have upgraded to a four-times-per-day pill routine. Oi.

Liver Functions

The bloodwork also showed my liver functions as continuing within normal ranges. This means whatever’s going on with the elevated CEA levels hasn’t yet grown large (or fast) enough to impair my liver. That’s relatively good news, as the swiftness of the recent spike in CEA levels, combined with my recent metastatic history, had led me to fear a wildfire metastasis moving very quickly through my body.

CEA Levels

As of Monday, CEAs were at 6.6, up slightly from 6.4 two weeks ago. That amount of variation is within the margin of error of the testing process. Since one of my fears was a sharply uptrending CEA, in a weird way, this is good news. It’s also bad news as it confirms the overall uptick from March’s 2.9, which implies with near-certainty new metastatic tumor activity, probably in my liver. I will know more on 5/8, after my 5/7 CT scan. I have also queried my oncologist about the value of getting bloodwork done on 5/7 (ahead of my usual schedule) in order to have the most current information when we meet.

Social Work

After a conversation with the American Cancer Society reps in the infusion center Monday, I am pursuing an appointment with the oncology social worker to discuss support resources in the somewhat likely event I receive a difficult diagnosis on 5/8. We’ve been playing phone tag thus far. I’ve made it the past five years without feeling the need to seek a support group, but when I go terminal, I suspect I will benefit from something like that, as I’ll be further outstripping the resources of my circle of friends, family and loved ones. Likewise, looking to such support for the_child. She may or may not be interested in participating, but I definitely want to offer her the option.

Planning Ahead for Liver Failure

I am also pursuing an appointment with the oncology nutritionist to talk about how to eat in the context of progressive liver failure, as seems to be a likely future course. Even if this round turns out to be something other than liver metastases, liver mets are my most probable fate. As mentioned before, I am also meeting with my primary care physician on 5/10 to talk about the course of liver failure and what kinds of advance planning we may want to do with regard to treatment decisions, cognitive issues and so forth.

Dealing With Photosensitivity

A while back, Team E— turned me on to a line of clothing from Loki. They’re climbing wear, but they turn out to work really well for people with extreme photosensitivity. (i.e., me.) Basically, Loki makes jackets and hoodies at various weights which include hoods much deeper than normal, face masks and optional mittens built into the sleeves. It’s some pretty clever stuff.

The problem is that the first hoodie I bought was in black, and when I have it on in full sun aversion mode, I look like I’m about to rob a convenience store. So we got one in green. Which mostly makes me look silly. Which fine, because silly is less scary to other people.

Lisa Costello and I were trying to put a name to this outfit, but it was calendula_witch who said I looked like the Jolly Green Jawa.

At any rate, Loki gear is highly recommended if you or someone you know is dealing with chemo-induced photosensitivity. (Or photosensitivity for any other reason, I suppose.)

Skin Conditions and The Itch

Another piece of advice on living with cancer that turns out to need a signal boost cropped up during last week’s Reddit Fantasy AMA chat, of all places. That has to do with dealing with skin conditions and the damned itching from (in my case) Vectibix. There are certainly other drugs which create this problem as well. Almost every night, I take a baking soda bath. Like you might do for poison ivy. I use the equivalent of a box of baking soda, though we buy it in large bags from Costco, poured into water as hot as I can stand to be in. I then soak myself in various positions to get as much coverage as possible. This also tends to make me very sleepy, which combined with the reduced itching, leads to a much better night’s rest. My skin winds up feeling a bit slippery from the baking soda, which takes a bit of getting used to, but I also take a shower every morning. So, as with the Loki gear, if you or someone you know is dealing with chronic skin conditions or itching, this is highly recommended.

Photo © 2013, Lisa Costello.

This work by Lisa Costello is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.

Tags: Cancer, Child, Family, friends, health, Personal, Photos, radiantlisa

Posted: 5:49 am Wed April 24 2013 | Comments(10) |

[travel|events] My upcoming appearance schedule, as it stands today

For those playing along with the home game edition of “Where’s Jay”, here’s my current appearance schedule. Subject very much to changes in my health, of course.

Date	Event
Tuesday, April 23rd	Wordos in Eugene, OR, for a discussion of my Nebula- and Hugo-nominated novella, “The Stars Do Not Lie” (with Lisa Costello in attendance)
Thursday, May 2nd	Speaking at Illumina Corp in San Diego on Whole Genome Sequencing from the patient perspective (with both the_child and Lisa Costello in attendance)
Friday, May 3rd through Sunday, May 5th	Guest of Honor at Gaslight Gathering (with both the_child and Lisa Costello in attendance)
Wednesday, May 8th	Meeting with my oncologist to discuss current developments, the formal diagnosis and treatment plan
Friday, May 17th through Saturday, May 18th	Nebula Awards Weekend in San Jose, CA (with both the_child and Jersey Girl in Portland in attendance)
Everything after this point is subject to change depending on the exigencies of cancer treatment per my oncology consultation on May 8th
Sunday, May 19th through Sunday, May 26th	Rio Hondo writing retreat in Taos, NM
Saturday, June 1st through Friday, June 7th	Work trip to Omaha, NE (with Lisa Costello in attendance)
Saturday, 15th	JayCon XIII [ jlake.com | LiveJournal ] here in Portland, OR (with various other festivities TBA around the weekend, pretty much everyone in attendance)
Friday, June 28th through Sunday, June 30th	Locus Awards Weekend, Seattle, WA (with Lisa Costello in attendance)
Thursday, August 29th through Monday, September 2nd	LoneStarCon 3, San Antonio, TX (with both the_child and Lisa Costello in attendance)

Tags: California, Cancer, Child, Conventions, events, health, jerseygirl, Omaha, radiantlisa, Seattle, Texas, Travel, work

Posted: 5:08 am Mon April 22 2013 | Comments(5) |