[cancer] Field notes from Cancerland, birthday weekend edition


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.

20 thoughts on “[cancer] Field notes from Cancerland, birthday weekend edition

  1. Walker says:

    My friend going through similar: http://marcdu4.wordpress.com/ Best for you, Jay:

  2. catfriend says:

    Re: JayCon and JayWake Even people you’ve never met are welcome?

    1. Jay says:


  3. anonymous says:

    Jay have you been tested for Lynchsyndrome/hnpcc? it is a

  4. homa_bird says:

    found your blog, stayed up till 3:30am reading it; thanks for writing about cancer. My little grandson has been battling a very aggressive cancer for the last 6 months, he’s almost two. It’s been brutal to watch, I have been my daughter’s “person” through it all, we are at ohsu too (doernbecher’s). your thoughts and honest have helped. can’t say why or how, they just have. one thing i’ve learned from being with a small person dealing with cancer: just live moment to moment, they’ve got that down. all the kids on the 10south cancer ward have that down, i learn so much from them. they don’t know they are sick, they don’t even really care. they just want to know if they can do another loop in the wagon: FASTER. and where’s that ball and watch me fly this airplane again. etc etc. its awful when he throws up (all the time) then hes over it and laughin. no fear, no imagination about what might happen. just full on living. gotta love that. thanks for listening

  5. anonymous says:

    germline mutation that gives you an 85% lifetime risk of colorectal cancer. your 49 you got cancer at 44 A young age for crc. Might be worth checking in to. If this is the case your daughter would have a 50% chance of inheriting it. Best of luck to you. keep the good attitude.

    1. Jay says:

      Yes, I have been tested for Lynch and all the other known genetic markers for colon cancer and its variants. I am sadly normal in that regard

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