You've got to love a guy with terminal cancer, Jay Lake, who has a new favorite joke:
"What's the only difference between Jay Lake and a ham?"
"The ham is curable."
Read the entire Oregonian story that was in today's paper. Since it probably will disappear into the paid archives before too long, I've copied the story in its entirety and attached it as a continuation to this post.
I'm not terminal (except in the sense that we all are). But I've thought about how much sense it makes to have a memorial service for me while I'm alive -- when I could enjoy it. I was glad to see that Jay is doing just that.
A Jay Wake is scheduled for July 27. Sounds like a smiling-time will be had by all. Some excerpts from the Jay Wake page:
You are invited to the pre-mortem wake and roast for Jay Lake, a somewhat morbid, deeply irreverent, but joyous celebration of Jay’s life. This is a time for celebrating Jay’s life, loves, and dark, twisted sense of humor. Bring your stories (hysterical, at Jay’s 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.
...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 Jay touched your life. This is a time to say how Jay touched you inappropriately.
Read on for the Oregonian story.
So why is the popular science fiction writer and blogger wearing a floppy hat with horns at a bookstore event for his new novel? Why is he planning three events in his own honor -- JayCon, JayFest and JayWake -- in the next two months? Why is this his new favorite joke?
"What's the only difference between Jay Lake and a ham?"
"The ham is curable."
And what's up with those hard drives on his dining room table, the ones that contain his whole genetic sequence? If Lake has his way, sometime in the next few weeks they'll be posted on the Internet for all to see and study, making him perhaps the first person to put his entire genetic sequence out there at no charge.
It's easy to find answers to those questions. Online and in person, Lake is available, honest and articulate. His sometimes funny, always-frank reports on his medical condition attract tens of thousands of followers to his blogs and Facebook page. He's been writing publicly about his cancer since the second day and hasn't backed off as the prognosis has gotten grimmer.
"At this point, there's only bad news and worse news," Lake says, reclining in a chair in the suburban duplex where he lives with his 15-year-old daughter. Lake turned 49 last week and doesn't look too bad for someone with a body full of tumors and surgical scars crisscrossing his chest and stomach. He's been taking Regorafenib, a drug designed to fight the growth of the tumors, and the side effects haven't really kicked in yet.
One side effect is pain and skin loss in his hands and feet, and if that happens he won't be able to write, only dictate. At that point there will be a decision about whether the potential for increased life span is worth the decline in quality of life, but that's a little ways down the road. In the meantime, Lake is an open book. He's comfortable answering any question. Fire away.
Lake has published nine novels and more than 300 short stories, but cancer has brought him more attention than science fiction. His blog posts and the chatty, forthright way he describes his condition ("Field Notes From Cancerland" is a regular feature) have won him admirers around the world. The reaction to the bad news and worse news has been an outpouring of affection and support that leaves him almost speechless. Not quite speechless, but almost.
"We know where this road is taking me," Lake wrote on his blog last month. "We just don't know how hard, or for how long. I will continue to tell this story in as much detail as I can manage, as the value of that narrative has been overwhelmingly demonstrated time and time again. Telling this story is one of the few good things I can derive from cancer. I cannot cheat death, but I can cheat the terror of the disease a little by easing it for others."
When Lake was profiled in The Oregonian in April of 2012, he had four tattoos of the zodiac sign for cancer on his left wrist, one for each of his surgeries, and two biohazard symbols representing chemotherapy series. Since then he's added another cancer sign (for the January surgery on his liver that revealed the new tumors) and two new biohazard symbols that aren't filled in because he didn't finish the chemotherapy series (either because it wasn't working or wasn't a full series). There are also tattoos on the back of his head that aren't visible when his hair is grown out, and one that says "If You Can Read This, I Have Cancer Again.""In tattoo language the biohazard symbol usually means you're HIV positive or you have AIDS," Lake says. "I don't. What it means for me is when you're on chemotherapy you're a biohazard because of the chemicals. Your blood, your saliva, your urine ... everything that comes out of your body is all hazardous.
"This is the (sign) for cancer," Lake says, pointing to his wrist. "I'm actually a Gemini. It's a pun."
He counts off.
"Cancer, cancer, cancer, cancer, cancer."
Tattoos are body art, a permanent expression of a feeling or emotion designed to go to the grave with those who bear the pain of having them done. Lake likes his tattoos but wants his legacy to be his fiction and his writing about cancer.
Another potentially more important legacy presented itself when he had genetic testing done in February. The idea was to look for genes implicated in the cancer that might be affected by drugs other than the ones he'd been taking. It didn't work, but one result was Lake now possesses a full sequence of his healthy DNA and his tumor DNA, and he plans to offer it up to anyone who wants to have a look at it.
"I'm open-sourcing my genome so that scientists and doctors as well as hobbyists and students can have access to a full human genome, which is very difficult to find right now," he says. "I haven't been able to help myself very much so maybe I can help some other people."
Somebody could study that and come up with something that will save the world.
"That's exactly right. That's why I want to give it away, so that somebody else can help save the world. If that becomes true then I have triumphed over my disease. Even if I'm not here to know it. My daughter will know. You will know. Everybody will know."
To raise money for the whole genome sequencing, some of Lake's many friends in the science fiction community organized an "Acts of Whimsy" fundraiser. Mary Robinette Kowal read selections of beloved classics as phone sex. Scott Lynch and Elizabeth Bear performed a sock puppet show of one of Lake's short stories. Neil Gaiman performed a cover from the Magnetic Fields album "69 Love Songs" while accompanying himself on the ukulele. Howard Tayler drew a picture of Lake kicking cancer's rear end. Klingon language expert Lawrence Schoen presented five pick-up lines used in Federations bars by Klingons.
The goal was to raise $20,000. About $50,000 was raised. Lake was (almost) speechless again.
When did it go from bad news to worse news?
"Right up until the January surgery we were still hoping we could beat this thing," Lake says. "When they opened me up ... (the surgeon) said to me later 'normally if we open you up and find unexpected tumors we just close. We don't keep going.' ... I went into surgery thinking I had three, maybe four tumors, and when I woke up I had eight. I had gone from being advanced to being terminal in that moment."
What was your reaction?
"Shock and despair. I don't want to die. We're all born with our tickets punched. There's a level at which it's possible to be kind of philosophical about it but when it comes down to this year, at this point in my life ...
"I don't know why I'm shocked. This has been in the wind for a while. But nonetheless every time I get new bad news it's shocking. And there's despair and there's anger and there's frustration. The only emotion I don't permit myself is self-pity.
"Why me? I think it's an unfair question. The universe is not fair or unfair. It just is. If it happens to me, too bad.
"And you know? It's a good year. I'm up for four major awards in my writing career. Things are happening. Some of them are terrible, but some of them are good."
In March Lake had a meeting with his oncologist on the seventh floor of the OHSU Center for Health and Healing. It was a sunny spring afternoon, and he was accompanied by his father, Joe Lake, a retired diplomat, and his friend Lisa Costello. Lake was tired and talked emphatically about how the health care system is unfair to those who don't have the resources he does. He has a good insurance plan through his job and noted that his insurance company has spent more than $1 million keeping him alive. His medical file is 6,500 pages.
"As a society we make people, in the most difficult time in their lives, do the most work. We have a health care system that assumes fraud and requires you to go to great lengths to demonstrate that you're not committing fraud. That means a lot of paperwork and a lot of compliance at a time when most people are the least equipped to do those things. It's highly, highly punitive. It's very Calvinist. It's a very conservative mindset: 'You are stealing a benefit from me.' That's what the system says. 'Prove to me you're not stealing before I'll help you.' It's disgusting."A few hours later, at the Powell's Books in Cedar Hills Crossing, Lake gave a reading from his novel "Kalimpura."He wore a green floppy hat with white horns. The main character in the book, Green, is based on Lake's daughter Bronwyn, and he pointed to the book's cover, which shows Green carrying her twin babies in a pouch and on her back and holding a large knife in one hand, and reminded the audience that Bronwyn is "not a trained killer." The cover got some positive attention from a Facebook group devoted to people who wear their babies.
Lake is writing shorter fiction these days because he doesn't have the strength and sustained concentration necessary for novels. A novella called "Love in the Time of Metal and Faith" will be out later this year. A book about cancer called "Going to Extremes" has been revamped because it was going to be built around a trip to Antarctica with Bronwyn that's not going to happen. The new working title is "Jay Lake's Book of the Dead."
JayCon is Lake's birthday party. It started in 2000 when he moved to Portland and turned 37; it's a pizza party for family and friends.
JayFest is a group of writer friends gathering at Powell's Books at Cedar Hills Crossing to read and sign books with some of the proceeds going to charity.
JayWake is a memorial service and roast, a chance for friends to celebrate his life while he's around to hear it. He plans to enter the party being carried in a coffin and will pop out at the right moment.
Isn't that a lot of Jay?
"Most writers are a neurotic mess, including me if you catch me on the right day, but at the core of it you really have to believe in what you're thinking and doing to think anyone else (cares). You're a little bit like the 3-year-old who walks onstage during the church play and says 'look at me!' ... There's a level at which I'm perfectly happy to hear my name. It gives me something to be happy about at this time when most things that make me happy are being stripped away, piece by piece, never to return."
Do people come to you asking for wisdom because they know you're dying, like "Tuesdays With Morrie" or something?
"My term for that is Special Dying Person Wisdom."
Do you have some?
"No. Love yourself. Love your kids. Be nice to people. But I did that before I got sick, you know?
"I don't think there is Special Dying Person Wisdom. What there is is Special Dying Person Focus. There's the famous concept that nothing concentrates the mind like the prospect of a hanging. That's me. My mind is concentrated."
Reading: JayFest starts at 6 p.m. Thursday at Powell's Books at Cedar Hills Crossing, 3415 S.W. Cedar Hills Blvd., Beaverton. Participating authors include David Levine, Phyllis Irene Radford, Devon Monk, Barb and J.C. Hendee, Shannon Page, Mark Ferrari, J.A. Pitts, M.K. Hobson, Diana Pharaoh Francis and Tina Connolly.