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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.

[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.

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

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 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.

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.

[cancer] Field notes from Cancerland, post-CT edition

JayWake

I will be making a full post on this, probably tomorrow, but planning for the JayWake continues apace. Event details are here, and there’s a Facebook event page as well. This will be Saturday, July 27, 2013 at Holiday Inn Portland Airport, in space generously donated by Cascade Writers. This is your chance to participate in my Official Good-bye. After all, I’ve always wanted to go to my own funeral.

Generosity

Generosity continues unabated. Gaslight Gathering raised a substantial amount of money for me, led by Val Ontell and Anastasia Hunter, with special thanks to auctioneer Dave Rodger. BayCon did it again two weeks later. Again, my profound thanks to Michael Siladi, Caradwen Braskat Arellanes, and auctioneers Dani Kollin and Eytan Kollin. And most especially my profound gratitude to everyone who contributed to each of those auctions.

Spending

Money flows in, money flows out. An unattributed accident at my house recently caused my MacBook Air to be literally flooded with water unbeknownst to me. I discovered this probably two or three hours after the fact. The old machine was well and truly bricked. I spent much of yesterday afternoon at the Apple Store’s Genius Bar where they confirmed that yes, it was well and truly bricked. Luckily the solid state drive hadn’t been fried out along with the batteries and motherboard, so we were able to recover my up-to-date data. This has set me back almost $2,000, including a like-for-like replacement Macbook Air, AppleCare for the new machine, and some new software licenses for several packages somehow hard-keyed to the old machine.

Friends and Family

I flew back from Rio Hondo, arriving home about midnight Sunday. Monday a number of us gathered at the house, including Lisa Costello and [info]the_child, as well as [info]mlerules, Team E— [info]lillypond (a/k/a my sister), the Niece, [info]tillyjane (a/k/a my mom), and for a little while, Mother of the Child. Speaking of generosity, my friends in the Omaha Beach Party had sent me an Omaha Steaks party pack, so Jacob cooked up a feast. Great progress was made in clearing the last of my dead storage boxes, sorting through the remaining loose filing, getting rid of a bunch of Goodwill and recycling stuff, and returning some stray postal bins. I now need to find a local friend or fan to be my Powell’s runner to help with some book reselling.

The New CT Scan and My Friend Regorafenib

I’ll post a full report shortly, but the new CT scan yesterday was discouraging in unsurprising ways. I am coping with that as I cope with everything on this journey: incrementally and verbosely. This was of course intended to baseline my tumor status so we can properly evaluate the effectiveness of the Regorafenib I started taking this past Monday. Each CT scan is like a road sign telling me how far I have to go to my final destination. A person could develop an aversion, I am telling you.

[cancer] Field notes from Cancerland, high altitude edition

Next Treatment Steps

Monday I start Regorafenib. I am frankly rather afraid of this drug. It can have dreadful side effects. And at best, we have a 50/50 chance of seeing useful results. To that end, I have pushed for a baseline CT scan which I will be undergoing on Tuesday. This is out of sequence, as the normal minimum spacing between CT scans is 2 months, while my previous scan was three weeks ago. However, I felt it was important to have an accurate measurement of tumor size and distribution at the start of the Regorafenib series, to compare two months down the road. The hoped-for positive result is a halt in tumor growth. Also, this 3-week scan will give us a decent notion of how fast the tumors are growing.

Current side effects

I’ve been having a lot of problems with my feet this week. This has led to me being minimally mobile. Not good for exercise. On the other hand, simply existing at my current altitude is practically aerobic exercise. That in turn confuses the issue, as I sleep poorly up here anyway, so I cannot tell if I’m having sleep problems. Likewise, my skin continues troublesome, though it is slowly recovering. We discontinued the Vectibix five weeks ago, which removed the primary driver of my skin issues. And fatigue, lots of fatigue, but difficult again to disentangle that from altitude sickness.

JayWake

Planning for the JayWake continues. July 27th, 2013, in Portland. The link above has time and venue details, and hotel information. A rather substantial group of people have been making some rather substantial contributions to make this happen. I will be making public thanks in due time, and in accordance with the wishes of various donors. This is an open event, so if you can be in the Pacific Northwest that weekend, please do so.

Generosity

Both in the matter of the JayWake and otherwise, generosity continues to flow. To the point of overwhelming me sometime. Thank you all for being part of this journey I’m on. I feel slower and more tired every day, it seems, but I am sustained by your love.

The Unbearable Lightness of Satori

Speaking of overwhelming, yesterday on my social media footprint, I said, “Almost any book can make me cry now. The closer I grow to death, the more emotionally fragile I become.” It’s true. Even light, funny books bring tears to my eyes when I reach the point of closure. It’s a very strange mental space to be in. I don’t reject the reaction. It’s genuine, it’s coming from inside me. Rather, this is a different way for me to consume narrative. Another part of the journey.

Every step is a revelation.

[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.