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[conventions] At Lonestarcon 3

At Lonestarcon 3. Very busy just keeping up, exhausted as well, so blogging continues irregular. [info]the_child and her mother arrive this evening to join me and Lisa Costello for the Hugos tomorrow. Also, the Lakeside premier was yesterday. It was very moving, and strange to see a movie about myself.

More to come when I have time and brainspace.

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[travel|personal] Off to San Antonio

We are off this morning to San Antonio for a relatively brief pass through Worldcon. Home late Monday night. I will probably be blogging lightly over the long weekend, given my ongoing challenges with multitasking and productivity these days.

See some, all or none of you there.

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[conventions] My Worldcon programming schedule

Here is my Worldcon programming schedule. I am being conservative with my time due to illness and fatigue issues, and will likely not be very available in the evenings or at parties. (Except for Hugo night.) You will catch me out and about during the day, however. Note, I am not taking part in “Stroll With the Stars” due to my mobility impairments.


8/30/13
Lakeside Screening 9:00 am to 11:00 am
Autographing 12:00 noon to 1:00 pm
Kaffeeklatch 5:00 pm to 6:00 pm

8/31/13
Reading 10:30 am to 11:00 am
Panel: Space Opera: More than Mind Candy? 4:00 pm to 5:00 pm

9/1/13
Panel: The Making of Lakeside 12:00 noon to 1:00 pm
Panel: Cutting Edge Cancer Research 1:00 pm to 2:00 pm
Jay Lake Interview 3:00 pm to 4:00 pm
Hugo Awards (including reception and Losers’ Party) 7:00 pm to 11:00 pm

See some, all or none of you there.

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[cancer] Field notes from Cancerland, post-New Zealand edition

Treatment Progress

I had a chest x-ray yesterday, to make sure my deep chest cold from New Zealand hasn’t turned into pneumonia. Everything’s clean. I had two oncology appointments this coming Monday, but one got postponed. Given that I continue to tolerate the Regorafenib adequately, we’re kind of in a holding pattern until the mid-September scan. So I’m not too exercised about any of this. I am currently in the off week, but restart the drug next Wednesday (I think, the International Date Line has messed up my calculations a bit). So, yeah, side effects bingo and the eternal GI merry-go-round continue as is currently normal. Not to mention some very annoying, very slowly healing skin problems.

My Overall State

Not to put too fine a point on it, but I feel like hammered hell. This is a combination of cancer and its treatments, the aforementioned deep chest cold, jet lag, trip exhaustion, and for all I know, the phase of the moon. Almost everything that happens to me these days is so multi-factorial that it all becomes something of a blur. All I know is I’ve been home three days and I still can’t think in a straight line. Which is too bad because I have a giant backlog of bills, legal paperwork, financial paperwork, email and Ghu knows what else glowering at me from my desk and my inbox.

The Progress of Disability is Not Strained

I’m still not free to discuss it in detail here online, but there’s significant continuing progress in my various disability claims. As I have commented before, I don’t want to prejudice those processes, so I won’t discuss them until things are well settled. Suffice to say the recent news has been fairly good. As with every step of this journey, each answer spawns a hydra of new questions.

Family Matters

My brother is in town visiting from the East Coast. This is a fairly rare event. I’ll see quite a bit of him over the next few days, though I probably need to stay home and hide today, given my ongoing wretchedness.

Friends

There’s quite a roster of friends coming to visit over the next couple of months. Somewhat hilariously, my guest room calendar is almost fully booked through mid-October. People trying to see me while I still have enough of my mental and emotional stuff together for it to be fun.

World Fantasy in Brighton

If my September scan is positive (for those values of “positive” which accrue to me these days), Lisa Costello and I are considering burning some more Frequent Flyer miles to come to the UK for World Fantasy. Even if all we actually attend is Barcon. If I do that, I’ll try to stay on a bit and visit with my many friends Over There.

My Fundamental Mental and Emotional State

Oh my God, am I tired of treatment. I am tired of cancer. I am tired of feeling miserable almost every day. I am tired of the endless shits, punctuated by occasional bouts of constipation. I am tired of fatigue. I am tired of feeling, and acting, stupid due to cognitive impairments. I am tired of being overslept. I am tired of being badly slept. I am tired of the many aches. I am tired of the terrible state of my feet. I am tried of the sensitive state of my hands. I am tired of being toxic to my friends and lovers. I am tired of being tired.

But I am not yet tired of life.

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[photos|events] JayWake, the retrospective

JayWake. There were all these people. A coffin. (A very hot, dark, coffin.) Books. Some good food. Friends from Germany, Canada, Connecticut, Texas, Utah, California, Washington, Arizona and elsewhere. A lot of laughter. Some mortification. Deep embarrassment. Profound amusement. Joy. Love. More than I can ever describe, or thank, or return.

Untitled

Read the rest of this entry »

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[personal] JayWake, the day after

I’m pleased, tired, and finally home from JayWake. My thanks to everyone, over and over.

I have yet to collect my thoughts, but Ruth Nestvold did a pretty good report.

There is one important thing I learned yesterday. Coffins are hot and dark on the inside.

More to come. And thank you, so much, to all who came or supported or sent good wishes.

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[cancer] JayWake is today

Small Clockwork Departure You are invited to my pre-mortem wake and roast, a somewhat morbid, deeply irreverent, but joyous celebration of me. This is a time for celebrating my life, loves, and dark, twisted sense of humor. Bring your stories (hysterical, at my expense), your tasteless jokes, and any and all expressions gleefully macabre. Come party with the man who has never passed up the chance to poke cancer in the eye and laugh about it.

Date/Time:
Today, Saturday, July 27, 6:PM – ?

Location:
Holiday Inn Portland Airport
8439 NE Columbia Blvd
Portland, OR 97220

We are deeply grateful to the Cascade Writers’ Conference who is gifting us with the cancellation of their Saturday evening programming so that their members can attend JayWake. In addition, they have offered the unused space for our celebration. We are humbled by their generosity.

We are also deeply grateful to Tom Doherty and Tor Books for their very generous support of JayWake,

Food and Libations:
There will be a buffet dinner for guests who RSVP. RSVP-ing tells us how many people to prepare for. Please email jaywakereg@gmail.com or reply to the Facebook event to RSVP. Donations will be accepted (but not required) to offset the cost of the meal.

Roast:
The Roast will begin at about 7:30. Be warned: the jokes and stories contained herein will not only push the boundaries of good taste, they will leapfrog over the boundaries blowing a raspberry. This is not a time to say how I touched your life. This is a time to say how I touched you inappropriately. Please contact jaywake.questions@gmail.com for information on being a scheduled speaker.

Donations:
We will be accepting donations to offset the cost of the meal and event. Use the PayPal button below, or contact jaywake.questions@gmail.com if you’d like to donate in another way.

T-Shirts:
T-shirts with a black and white line art version of the art below, by Howard Tayler, will be available. Contact jaywake.questions@gmail.com if you’d like to order one.

Planning to Attend?
If you are planning to attend, please RSVP to jaywakereg@gmail.com or at the Facebook event.

Clockwork Departure
Art © 2013 Howard Tayler. Reproduced with permission.

Questions? Email jaywake.questions@gmail.com.

This post is adapted from the JayWake page here.

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[cancer|repost] JayWake, in which I host my own funeral

Tomorrow…

Small Clockwork Departure You are invited to my pre-mortem wake and roast, a somewhat morbid, deeply irreverent, but joyous celebration of me. This is a time for celebrating my life, loves, and dark, twisted sense of humor. Bring your stories (hysterical, at my expense), your tasteless jokes, and any and all expressions gleefully macabre. Come party with the man who has never passed up the chance to poke cancer in the eye and laugh about it.

Date/Time:
Saturday, July 27, 6:PM – ?

Location:
Holiday Inn Portland Airport
8439 NE Columbia Blvd
Portland, OR 97220

We are deeply grateful to the Cascade Writers’ Conference who is gifting us with the cancellation of their Saturday evening programming so that their members can attend JayWake. In addition, they have offered the unused space for our celebration. We are humbled by their generosity.

We are also deeply grateful to Tom Doherty and Tor Books for their very generous support of JayWake,

We are arranging for a group rate for out-of-town guests at the Holiday Inn. Please email tammyjoy6@gmail.com for information on the hotel.

Food and Libations:
There will be a buffet dinner for guests who RSVP. RSVP-ing tells us how many people to prepare for. Please email jaywakereg@gmail.com or reply to the Facebook event to RSVP. Donations will be accepted (but not required) to offset the cost of the meal.

Roast:
The Roast will begin at about 7:30. Be warned: the jokes and stories contained herein will not only push the boundaries of good taste, they will leapfrog over the boundaries blowing a raspberry. This is not a time to say how I touched your life. This is a time to say how I touched you inappropriately. Please contact jaywake.questions@gmail.com for information on being a scheduled speaker.

Sandra Tayler and the JayWake Book
The mighty @sandratayler is working on the Jay Wake Book. She’s looking for pictures, stories and other material about me. As Sandra says:

Our friend Jay has been diagnosed with terminal cancer and is hosting his own wake, Jay Wake, which Howard and I are attending. We know that other friends of Jay would love to be able to come, but can’t for a multitude of reasons. The Jay Wake Book is a project to let everyone participate in the celebration of Jay. I’ll be collecting stories, art, and photos of Jay to compile into the book. The first iteration of this book will be presented to Jay at Jay Wake. The second iteration will include stories and photos collected at Jay Wake. It will be made generally available either in electronic or print version.

Please contribute if you can.

Donations:
We will be accepting donations to offset the cost of the meal and event. Use the PayPal button below, or contact jaywake.questions@gmail.com if you’d like to donate in another way.

T-Shirts:
T-shirts with a black and white line art version of the art below, by Howard Tayler, will be available. Contact jaywake.questions@gmail.com if you’d like to order one.

Planning to Attend?
If you are planning to attend, please RSVP to jaywakereg@gmail.com or at the Facebook event.

Clockwork Departure
Art © 2013 Howard Tayler. Reproduced with permission.

Questions? Email jaywake.questions@gmail.com.

This post is adapted from the JayWake page here.

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[cancer|personal] The poison that is hope

Last night, Lisa Costello, [info]mikigarrison and I were discussing yesterday’s consultation at some length.

This is good news. Good news in a fantastic number of ways. It means I’ll make it to Worldcon. It means I might even have a chance to go to a few more events later on, if my current state of health holds. (Now I’m dreaming of going to the UK for WFC.) It means my friends and loved ones who come to visit me will find me able to be myself for them. Not a gasping patient recumbent in a powered chair. It means I can see [info]the_child into and possibly through another year.

My lease on life has been extended, by at least a few months. In my current state, a few months is tantamount to eternity.

But hope…

Hope is a poison that kills sweetly and slowly. Hope has me believing things that are hurtfully untrue. Hope creates expectations that will be shattered. If cancer has taught me anything this past half-decade, it is to never trust in hope.

So instead I plan, and make contingencies in case those plans go awry. And I limit myself, because even with this good news, I live in a body that exhausts too easily and doesn’t always cooperate with even the minima of day-to-day existence. And I am careful to tend that shell I have built, like a caddis fly, out of fragments of pain and discomfort and anger and fear.

Because if I hope too much, I hurt too much. The cancer always raises the stakes. Just because I won this hand doesn’t put me up for the game. Not at all. I cannot let myself be tricked into thinking that might be the case. Not even for a moment.

Best to live for this day, and the reasonable anticipation of a few extra days between now and the end.

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[cancer] Sometimes the news isn’t all about Armageddon

Lisa Costello, Dad and I met with my oncologist yesterday. They had both the CT and PET scan reports with them, which had not been pre-released to us.

Not to bury the lede, the news was about as good as news gets for me these days.

Basically, the tumors in my lungs have continued to grow, but modestly. The largest is about 10 mm. No new ones have emerged that were detectable by scan. As my oncologist says, this is not the most dangerous part of things. While unfortunate, we can live with this for now.

The abdominal tumors, in my liver and in omentum, have shrunk. Again, no new ones have emerged that were detectable by scan. This is a significantly good step, as it indicates the Regorafenib treatment has been effective. Shrinkage is in fact unexpected, as we were hoping for static size or minimal growth.

We discussed the recent highly elevated CEA levels which had so alarmed everyone. My oncologist is not sure what they mean, and neither are their colleagues. Possibly cancer cells under attack are releasing CEA as part of their stress. In effect, this is the first time CEA has given me a false positive. Which is a good thing.

The doctor characterized me as being an outlier, or even outlier to the outliers. My survival time is reaching unusual lengths. They felt like I could look forward to another nine to eighteen months of life, given the drug performance. That is sufficient time to possibly survive long enough to see next-generation treatments become available.

As of yesterday, I am resuming Regorafenib. Our followup is blood work and an oncology consultation in a month, with CT scan and another oncology consultation in two months. This also means that barring unusual circumstances, I will be at Worldcon.

So good news, or at a minimum, least-bad news.

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