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[cancer] Field notes from Cancerland, birthday weekend edition

Interviews

The Oregonian is running another interview with me today, entirely about my cancer experience. This piece by reported Jeff Baker is a followup to a profile they ran last year. It’s interesting to me to read about myself from a distinctly journalistic perspective. The coverage is friendly and sympathetic.

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:

ur 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.

Forthcoming Events

‘Tis the season and whatnot. JayFest is this coming Thursday at Powell’s Books Cedar Hills location. That’s a group signing and book fair featuring a dozen Northwest science fiction and fantasy authors. The book fair will run from 6 to 9 pm, with the group signing at 7 to 8 pm. I will be there, with various friends and family in tow.

Then this coming Saturday is JayCon XIII [ jlake.com | LiveJournal ], my big, public birthday party. This will be at the Flying Pie on SE Stark Street in Portland. There is a good chance this is the last JayCon ever with me in attendance, and certainly the last one where I’ll be fully on my game socially and emotionally, so if you’ve ever been tempted, now’s your big chance.

And of course, JayWake is coming up July 27th, because if I can’t enjoy my own damned funeral, who can? There are guests coming in from all over. I’d love for you to be one of them.

Hand-Foot Syndrome

In the department of less fun things, my hand-foot syndrome is rapidly becoming even more annoying. This is of course a side effect of the Regorafenib I am currently taking in an attempt to slow my tumor growth. My feet ache and sting progressively more as the day goes by. Eventually I reach the point where I can walk only with substantial pain. At first they would ease up overnight as I slept, but these past two mornings, I’ve woken up still in pain. My hands are having equivalent problems. This makes many simple tasks and household chores rather difficult. Not to mention the whole business is distracting. We see one of the oncologists tomorrow to talk about the side effects and their management. I’ll also be having bloodwork done, as this medicine is a liver antagonist, and the liver is of course the part of my body which is under the heaviest assault from my cancer.

The To-Do List

Remember my enormous to-do list [ jlake.com | LiveJournal ]? I continue to work my way through it. I’ll post a more detailed update in the next week or so, but suffice to say that this week forthcoming I have in addition to my oncology appointment also meetings with an attorney, an accountant and a financial planner. Plenty going on. I need to do it now, because the illness will likely slow me down soon enough.

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[personal] Birthdays, birthdays

Thursday night we had my birthday party in Omaha, about which I will post more, perhaps tomorrow. That was the actual date of my 49th birthday, 6/6. Last night, we had my family birthday dinner and party here in Portland, about which I will also post more, soon. Today [info]mlerules is celebrating her birthday (out of season), at which I, my family and most of the tribe will be in attendance. There may be posting about this as well.

Tomorrow will be socially quiet, though we are busy around the house. Monday we tumble into JayCon week, with a wide number of events and dinners and whatnot, culminating in JayCon XIII a week from today.

I am supposed to make my heart attack potato salad [ jlake.com | LiveJournal ] today for [info]mlerules‘ party, but the hand-foot syndrome from the Regorafenib is driving me crazy, so I cannot cook. Specifically, I cannot stand on my feet for any length of time, gripping things such as knife handles and spatula handles is quite painful, and I am severely heat sensitive, which makes roasting things in the oven or frying them in a pan a somewhat ill-advised activity.

Happily for all concerned, [info]tillyjane (a/k/a my mom) and the Niece are coming over this morning to pinch-cook on my behalf.

So, yeah, food and fun have abounded since Thursday, and will abound through next weekend. After which we doubtless go back to our usual state of starving and miserable.

Or maybe not.

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[personal] The week goes on

Not a lot of big doings to report. Plenty going on in my writing life, but it’s either administrivia or stuff-not-ready-to-be-announced. Day Jobbery has been busy. This is convenient, as I am in the Omaha office this week. Been seeing a lot of old friends while I’m here. It’s fun to introduce Lisa Costello to this part of my life, and the people in it.

I’ve been working in Omaha (in a remote sense) since 1999. Over the past fourteen years, I’ve made literally a hundred trips to this city. Kind of weird when I think about it. This has been my home away from home.

Working a lot on paving the way for the life changes in progress. Those are financial, medical, emotional, business and personal changes. And, of course, ultimately mortal changes. These days I’m so caught up in the details that sometime it’s a surprise to remember what I’m really doing.

My actual 49th birthday is tomorrow. We’re having a dinner for me here in Omaha. We fly home Friday, where I have some medical stuff in the afternoon, then my family birthday dinner Friday night. Saturday is the birthday party for [info]mlerules, for which I am planning to make my heart attack potato salad [ jlake.com | LiveJournal ]. That of course presumes my problems with my hands and feet will allow me to cook, which may be a major issue.

Next week I see the oncologist, the attorney, the accountant and the financial planner. Plus JayFest and JayCon XIII. And my very dear friend [info]fjm comes from England to visit me. And, and, and…

So the week goes on.

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[conventions|repost] Announcing JayCon XIII

ETA: We will be having my living wake, the JayWake on Saturday, July 27th. This will be a celebration of my life and a giant flip of the bird to my death. Including both a wake and a roast.

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 we may not ever get to do this 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
http://www.flying-pie.com/
[ Google Maps ]

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

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[conventions|repost] Announcing JayCon XIII – plus – JayWake

ETA: We will be having my living wake, the JayWake on Saturday, July 27th. This will be a celebration of my life and a giant flip of the bird to my death. Including both a wake and a roast. Watch this space for more details.

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 we may not ever get to do this 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
http://www.flying-pie.com/
[ Google Maps ]

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

Tags: , , , , , , ,

[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
http://www.flying-pie.com/
[ Google Maps ]

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

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[cancer] Field notes from Cancerland, part 2 this week

Baseline Health

My baseline health is a bit poorer than it has been in the past, even allowing for the fact that I’m on light artillery chemotherapy. My nails are splitting and cracking much more readily. My gums bleed excessively from tooth brushing. My ongoing weight gain is disproportionate to my dietary intake and exercise levels. (In the past I’ve been able to keep 20-25 pounds lighter with this same behavior patterns.) I wonder if those are related to evolving liver issues, though so far the biochemistry doesn’t suggest that. I also wonder if they’re stress-driven. Psychosomatic, in other words.

Stress and Meditation

I saw my therapist yesterday. We talked a lot about my stress levels, which are pretty much off the charts for both painfully obvious reasons as well as some exacerbating issues I don’t discuss here. He suggested I try meditation. As it happens, Lisa Costello has a daily practice, so I will discuss with her how she goes about it. Meditation has never been terribly successful for me in the past, as I find it difficult to focus that tightly, but I guess that’s kind of the point: reaching that focus.

Writing

I’m currently operating under the assumption that I have about three months of productive writing time left in my life. Possibly as little as two. This is due to my anticipating going back on heavy chemo next month, and knowing what that usually does to my creative brain. Of course I would love to be wrong, but right now I have to act as if this is the case. I’ve abandoned all but three projects. Original Destiny, Manifest Sin is ongoing, and I try to spend at least an hour a day on that. I’m also writing bridging material for Jay Lake’s Process of Writing, forthcoming from Apocalypse Ink. And I’m working with [info]kenscholes and series editor Steve Feldman to get METAtropolis: Green Space edited and out the door. Pretty much anything else I have on my plate is either being abandoned or seeking a collaborator. If I do wind up with a bit more time, I believe I will spend it working on short fiction. If somehow I wind up with a lot more time, well, we’ll see.

My Premortem Wake

I have received a very generous offer from some experienced con runners to manage my premortem wake. If things go the way I fear, that may coincide with JayCon XIII. Otherwise, it will happen as appropriate, sometime within the next year most likely. The trigger will be me receiving a terminal diagnosis. I’ll want to do it soon after, before medication or the progressing illness render me less and less able to enjoy the proceedings.

Photography

I think I want to start documenting my portrait. In a perfect world, I’d work with a pro photographer and do a weekly shoot. As a practical matter, I may set up a tripod and camera in a semipermanet installation in my house. Either way, I can capture myself in a series of portraits from now until death. I need to think this through. I think it would make a hell of an art project.

Basement

We continue to scour the basement here at Nuevo Rancho Lake by way of simplifying the stuff in the house before the shit all hits the fan. There will be concerted collective effort this Sunday. All sorts of things are surfacing, including the aforementioned note from my 8th grade English teacher, some of my Hugo and World Fantasy Award nominee pins (some are still missing), and my 1980 Connecticut driver’s license. Also, some long-missing belongings of both [info]the_child and Mother of the Child. It’s a very strangely mapped trip down memory lane.

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[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
http://www.flying-pie.com/
[ Google Maps ]

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

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[travel|events] Forthcoming travel and event schedule

Mostly just to have it out there, but also to give people who might want to catch up with me the chance to know where I’ll be, here’s my forthcoming travel and event schedule. As always, this is health permitting, though I should be clear through May regardless. I haven’t made plans past June except tentatively for Worldcon due to the significant uncertainly of my cancer status going forward.

April 10th-14th Paradise Lost, San Antonio, TX (Instructor emeritus)
Week of April 22nd Probably in Grand Rapids, MI a day or two for Day Jobbery, details TBA
May 2nd-May 6th Gaslight Gathering, San Diego, CA (Guest of Honor)
May 17th-May 18th Nebula Awards Weekend, San Jose, CA (Nebula Award nominee)
May 19th-May 26th Rio Hondo Retreat, Taos Ski Valley, NM
June 1st-June 7th Day Jobbery, Omaha, NE
June 15th JayCon XIII, Portland, OR
June 28th-June 30th Locus Awards, Seattle, WA
August 29th-September 3rd LoneStarCon 3, San Antonio, TX (Hugo Award nominee and Campbell Award co-presenter)

In most of these cases, I’ll either be at a public event, or host an open dinner. Watch for announcements.

Tags: , , , , , , , , , , ,

[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
http://www.flying-pie.com/
[ Google Maps ]

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

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