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[travel|events] My upcoming appearance schedule, as it stands today

For those playing along with the home game edition of “Where’s Jay”, here’s my current appearance schedule. Subject very much to changes in my health, of course.

Date Event

Tuesday, April 23rd Wordos in Eugene, OR, for a discussion of my Nebula- and Hugo-nominated novella, “The Stars Do Not Lie” (with Lisa Costello in attendance)

Thursday, May 2nd Speaking at Illumina Corp in San Diego on Whole Genome Sequencing from the patient perspective (with both [info]the_child and Lisa Costello in attendance)

Friday, May 3rd through Sunday, May 5th Guest of Honor at Gaslight Gathering (with both [info]the_child and Lisa Costello in attendance)

Wednesday, May 8th Meeting with my oncologist to discuss current developments, the formal diagnosis and treatment plan

Friday, May 17th through Saturday, May 18th Nebula Awards Weekend in San Jose, CA (with both [info]the_child and Jersey Girl in Portland in attendance)

Everything after this point is subject to change depending on the exigencies of cancer treatment per my oncology consultation on May 8th

Sunday, May 19th through Sunday, May 26th Rio Hondo writing retreat in Taos, NM

Saturday, June 1st through Friday, June 7th Work trip to Omaha, NE (with Lisa Costello in attendance)

Saturday, 15th JayCon XIII [ jlake.com | LiveJournal ] here in Portland, OR (with various other festivities TBA around the weekend, pretty much everyone in attendance)

Friday, June 28th through Sunday, June 30th Locus Awards Weekend, Seattle, WA (with Lisa Costello in attendance)

Thursday, August 29th through Monday, September 2nd LoneStarCon 3, San Antonio, TX (with both [info]the_child and Lisa Costello in attendance)

[cancer] So I’ve been thinking

So I’ve been thinking. And it’s not a pretty sight. Wrestling with what fellow cancer patient Janet Freeman-Daily calls “end of the tunnel blues”.

To be clear, nothing is known for certain yet. My elevated CEA levels are highly suggestive of new tumor activity in a manner consistent with what we know about my shortening metastatic cycle. I don’t have a confirming diagnosis, and won’t until early May. Even then, there are several ways this may play out.

The most likely scenario is that I have another round of multi-site metastasis in my liver. This is likely for both reasons of my health history and due to the CEA spike. For example, when I had my lung metastasis back in 2009, I didn’t see a CEA spike. For me, those seem correlated with tumor activity in the liver. Now that my metastases have started to express as multi-site events, they’re not likely to roll back.

Next most likely is single-site metastasis in my liver.

Less likely is single- or multi-site metastases elsewhere, such as my lung or my lymph.

A single-site metastasis somewhere other than my liver might be resectable, depending on location. Multi-site or multi-focal metastases won’t be resectable, mostly because there’s no clinical evidence that this is helpful, and putting me through another round of major surgery won’t look like a very good idea.

At this point my liver is considered nonresectable. After three surgeries and 33 chemotherapy sessions, it is fragile. My surgeon told me back in January they wouldn’t operate on it again, for fear of destroying the organ and killing me even more quickly. I’m not sure if this restriction applies to procedures such as radiofrequency ablation. If it’s in my liver, we’re almost certainly stuck with chemotherapy only as a solution.

In other words, the reasonably educated guess is that we’re looking at a metastatic event not subject to surgical cure. And we already know chemotherapy doesn’t do a lot for me. I’ve had eleven tumors across six presentations. Nine of those were exposed to chemotherapy prior to surgery. Four of those nine emerged while I was undergoing chemotherapy, and only one of those nine actually saw any shrinkage due to chemotherapy.

For me, at best chemotherapy slows or stops tumor growth. And we know as a general rule in cancer care that any drug loses its effectiveness within a year at most, as the cancer mutates into drug resistance under selection pressure from the drug effect.

There’s one more new drug left for me within the clinical standard of care for my type of cancer. It’s called Regorafenib. Without surgery, I’m pessimistic this will buy more than six months. A year at the outside.

We have a wildcard option in clinical analysis of the Whole Genome Sequencing. This may suggest new lines of attack. At this point, the possibility of a cure is deeply improbable. The possibility of buying another year or two is a thin but reasonable hope.

In any event, I seem likely anywhere for a month to something under a year from my terminal diagnosis. Depends on what’s growing inside me right now, and how we can manage to treat it. Once I get my terminal diagnosis, it’s my understanding I’ll have six months to a year depending on how aggressive the cancer is. I’m feeling pretty pessimistic about this as well given the recent sharp increase in the cancer’s activity. My likely cause of death will be liver failure, which is prolonged, painful and unpleasant.

In the mean time, I expect to be back on heavy chemo around mid-May. I further expect to never leave treatment again, at least not until the late stages of my terminal decline. This means that by sometime in June or July, I may never leave my house again except for medical purposes and very limited social engagements. This means I probably have three months of writing time left to me in my life, at most. This means I’m unlikely to make it Worldcon this year, and I’ll miss the Hugo Awards Ceremony. And so forth…

Not to mention the workplace and financial implications. Disability and COBRA. The economic disaster that is serious illness in this wealthy American society where we cannot bring ourselves to care decently for our vulnerable and our needy. The emotional impact on my family and friends. The impact on [info]the_child. The impact on me.

None of this is a surprise. It’s just now the problems are transitioning from theoretical issues to applied issues. I find myself wondering about things like what to do with all the books in my personal library. I find myself caught short with a sort of sticky, slow moving panic. A combination of the paralysis of dread and a need to do a great number of things very quickly is seizing me.

All of the above ranges from somewhat likely to certain. The only uncertainty is precise timing and sequence of events. And here my fears play up as well, in more irrational ways. I fear now that the new growth will be even faster and more aggressive than what we saw between this past August and January. I fear that my remaining time will be a handful of months instead of a year or two. I fear that I am already falling dreadfully ill and I will not even have the time to complete those few projects and tasks I still hope to finish. These are not educated guesses or medical likelihood (Although they are possiblities.) These are my own dark imagination talking.

And yes, I know this is not confirmed. But even if it doesn’t all happen in the next month, it will happen, and not too long from now. That’s what it means for me to be incurable.

I feel lost and afraid.

[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.

[cancer|writing] The road goes on forever, and the party never ends

I have very mixed feelings about my weekend at ICFA. Not at the professional level, wherein I had a gloriously fine time at the conference. Nor at the social level, see above. But at the level of internal reflection and how I experience things through the cancer lens.

I still haven’t sorted out what I thought and felt while there. It’s complicated. So, in no particular order…

Meeting and talking to a lot of students, facing a lot of life choices, reminded me that so many of my own choices are shutting down or being cut off due to my mortality. This really isn’t a feeling I have experienced prior to the cancer. Even as I’ve aged (relatively speaking, I’m only 48), I’ve always seen myself as having copious professional and personal choices. Not so much, now, not with the commitments I have. Some of those commitments are joyous, being parent to [info]the_child, for example; and some of those commitments are reasonable, such as my Day Jobbe career. But mostly I’m committed to this path of mortality which already restricts the kinds of plans I can make and dreams I can work on, and promises to soon restrict those much more tightly, until eventually they contract into the narrow point of my death.

Likewise, seeing a number of old friends and making some new ones in the process kept reinforcing my sense of being on a Farewell Tour. As I said the other day, while this might well be true, it’s not a helpful mindset. Yet there I was. Melancholy set in pretty hard.

My tolerance for social static and disruption is leaching away. Likewise my patience. I do not like these trends in myself. I’ve always aspired to be a good listener, a good friend, understanding about the challenges of human nature. As my illness evolves, I become more and more inwardly focused, which makes me less and less of those things.

I gave away or ditched most of my free books from the conference. I found myself explicitly thinking, “No, I cannot have more stuff at home.” I’m giving things away, not taking them in. Given my lifelong natural tendencies to be a hoarder, this is another dying kind of thought. My joy in stuff has almost vanished, taking with it much of my desire. These days when I look at books, one of my key thoughts is, “Will I live long enough to read it?” That’s not me, that kind of thought. Except now it is.

Meanwhile, cool things keep happening. I signed a nice little subsidiary rights contract yesterday which I’ll be able to announce soon. There’s various other bits of good news coming down the pike in my writing life shortly. I’m about to start writing Original Destiny, Manifest Sin. That online course I’m teaching starts today, and I’m giving a science lecture tonight. Friendships and loves bubble along, I still put my own socks on every day. There’s plenty to live for on a day-to-day basis. But the sadness keeps creeping in.

The road may go on forever, but I can see the end of the party from here.

[travel|cancer] Home, chemo, busy

Due to high winds in Orlando yesterday, the aircraft for my flight to Dallas was an hour late getting in. They boarded us, taxied out onto the runway for takeoff, then got caught in a 50+ mph squall that shook the plane hard where it sat on the ground and made the world outside about as visible as a murky aquarium. We sat on the runway almost another forty-five minutes. This caused me to miss my connecting flight from Dallas to Portland. This is turn caused me to take a flight four hours later, which was itself running late due to unusual jet stream activity.

Lisa Costello and [info]the_child met me at the airport. We didn’t get back to the house until almost 1 am. Today is a workday, which normally starts at 6 am for me. You do the math. Plus I have chemotherapy this afternoon.

I predict no writing will happen today, and I also observe I woke up exhausted, which will probably prove to have been my high point. I’d better be in shape tomorrow given that I’ve got the Writers Digest online course and the cancer lecture at Nerd Nite.

Meanwhile, Day Jobbery beckons.

[cancer] Coping skill blues

As mentioned, I am having quite a good time at ICFA. At the same time, I’m having a lot of cancer stress. Wound up retiring a bit early last night and in a very touchy mood, through absolutely no fault of anyone here or elsewhere. Being me, I spent some time analyzing this.

For one thing, dinner last night, while being of excellent food and companionship, was rather a downer in that we spent a lot of time talking about cancer and genomics. That was one of the main points of the outing, to have the talk time, but it’s never a topic that cheers me. At least not the cancer end of it.

Also, I am very much in a “Farewell Tour” mindset right now. This is probably not the healthiest approach I could be taking to things, but it’s the one I’ve got at the moment. The likelihood that I will never get to do [x] again is quite high, for whatever value of [x] you care to name (ie, attend this event, see that person, and so forth), but it doesn’t do me a lot of good to brood thusly. Regardless, that is what I seem to be doing.

Some of the folks in my life at home are getting cranky with me for hithering and yonning so much at the moment. I’m not seeing nearly enough of [info]the_child, Lisa Costello, Jersey Girl in Portland, Team E— [info]mlerules, Deb Stover, and my family members. From their point of view, they’ve been standing by me through thick and thin, and as soon as I feel a little better, I’ve headed for the high country instead of spending time with them.

They have a point. In the last three weeks I’ve been in Houston, Austin, Omaha and Orlando, and I’m going to Seattle next week. Forthcoming trips over the next two months include San Antonio, San Diego, San Jose and Omaha again. Plus several rounds of visits from out of town friends.

From my perspective, these trips are a collision of three different planning calendars (Day Jobbe, cancer care and writing events) with pent up demand on my part and others. If I don’t make these trips now, I probably never will. See my “Farewell Tour” comment above. I’ll be home soon enough, and grounded pretty much for the rest of my foreshortened life.

But that doesn’t mean I’m not neglecting the people who love me.

Just one more damned thing to be pissy about. One more thing by which to be pulled in too many directions at once. One more twenty-pound pile of sand I’m trying to cram into an eight-pound bag.

It’s hard to know when to serve my needs and when to serve the needs of my friends and family. It’s hard to know what my needs are when they’re in conflict. It’s hard to know what to say when others grow unhappy with me, except to keep my own mouth shut when I’m feeling touchy because I don’t want to say things I’ll regret.

If I only had more time, all of this could be more spread out and I could pay proper attention everywhere. Ultimately, that is what cancer steals from me: time. Time to travel, time to live my writer life, time to love, time to pay attention.

Time.

[cancer] Last night I was very, very angry

The fucking hits just keep on coming.

I’m still adjusting to my deepening sense of foreshortened mortality. Doors keep closing on my future, and I’m trying to live in the moment. In Omaha right now for work, which used to be a (nearly) monthly occurrence, but now happens far less frequently. I’m off to ICFA next week, along with some other event and personal travel plans in the next couple of months, because quite frankly I’m trying to cram in not just a year’s worth of living, but probably the rest of my life’s worth, into what will likely be a very narrow window.

At the same time, things happen at home. On this blog I rarely discuss the issues faced by people around me, and even then only with their permission. It’s not for me to breach other people’s boundaries of privacy and confidentiality. Suffice to say that in my circle of family and friends my own cancer journey has brought not just the obvious severe distress, pain and sorrow, but more serious issues including emotional breakdown and even hospitalization for stress-induced illness.

Yesterday afternoon there was a major eruption back in Portland. So serious that I looked into changing my flight home, but that was profoundly cost prohibitive. People are angry, bitter, and very sad; and some extremely expensive things happened which I shall have to pay for out of pocket. At this end in Omaha, I was on the telephone for over three hours dealing with what I could. Friends and family in Portland were far more deeply involved in dealing with things directly.

As a result I did not get any further writing done last night.

As a result I went to bed late and am short slept.

As a result I am probably going to have to cancel my weekend plans back at home.

As a result I am strongly considering canceling my trip to Florida next week.

It’s not enough that cancer has to ravage my own life, stealing both my long-term hopes and short-term freedoms. Cancer also fractures and distorts the people who love me. Their pain and anger then flows back into my life, where I have to deal with the consequences of that. I lose on both the first-order effects and the second-order effects.

I know this is not all about me. Other people’s distress is genuine and real and needs to be addressed. But God damn it, I feel like I cannot catch a break. Even this narrow slice of time where I can travel and do the things I used to do in my everyday life is compromised.

So last night I was very, very angry. I woke up this morning very, very angry. Not at anyone, just at the situation. Much as with the compounding financial issues of end-of-life care, the emotional issues that arise at end-of-life compound one another in a horrid negative feedback loop that tears us all down.

Cancer: it’s why I cannot have nice things.


P.S. — I apologize for talking around the issues. I know this style is classic passive-aggressive Internet drama bait. But some stories really, truly are not mine to tell, and it’s hard to talk about my part in them without breaching that confidence. It’s equally hard not to talk about them at all.

And yes, everyone involved will be all right.

[travel] Such a mess

I woke up late for work this morning. I never do this. But yesterday my usual 11-hour door-to-door trip from my house in Portland to my hotel in Omaha wound up taking 18 hours. Including an hour to drive from the airport in Omaha through 3-4 inches of packed snow on the road, plus massive ice patches, plus a 30 mph wind blowing more snow. Plus, at one point, being tailgated by the only other vehicle on the road, one of those geniuses who things their SUV’s four wheel drive exempts them from the laws of physics.

My initial departing flight was cancelled. My rebook was only two hours later, but the logical connecting flight to Omaha was full, so my connection at DFW was over five hours. The earlier connecting flight cancelled, so good enough I wasn’t on it, so my evening flight was overflowing. And left ninety minutes late. And due to weather (I presume) they took about 40 minutes to get the luggage out.

And, and, and… I felt like Mary Robinette Kowal. Have another drink!

At any rate, I am here now, and about to set off for work. Regular wit and erudition should resume tomorrow.

[travel] Off to Omaha once more

Yesterday was crazy-busy, so while I got a lot of needed household stuff done, I didn’t spend enough time with either [info]the_child or Lisa Costello.

Off to Omaha today for a week of Day Jobbery. Unfortunately my flight was cancelled, so I’ll be in quite a bit later than expected, as my rebooked flight has a much less favorable connection. Guess I’m having dinner in DFW.

I’ll be home Friday afternoon.

[cancer] There’s a hole in my bucket, dear Liza

Over the past couple of weeks, Lisa Costello and I have watched the first two Bourne movies together. They are particular favorites of hers, and I like action movies and thrillers just fine. I was pretty sure I’d previously seen The Bourne Identityimdb ], and couldn’t recollect if I’d seen The Bourne Supremacyimdb ]. Watching the first movie, I vaguely recalled one scene. Watching the second movie, all I could remember seeing before were the final two scenes of the movie.

Yesterday I was going through my writing spreadsheet checking for the publication markets of the few Original Destiny, Manifest Sin shorts which have published. I kept running into story titles I didn’t recognize. In a few cases, even on opening the file, I didn’t recognize the story text, either.

I used to be able to recall pretty much every movie I’ve ever seen in my adult life. I used to be able to tell you the title and plot summary of every story I’ve ever written. Nowadays? There’s nothing there in my head.

This applies in other areas of my life. I believe I mentioned recently here on the blog that I couldn’t recall my (step)mother ever breaking her wrist, even though she had commented at a family party last month about how I had helped her out while she was recovering. I’ve run into people — notably Brent Weeks at ConFusion last year (2012), whom I simply can’t remember meeting before, even if we have had substantial interactions.

I used to think this was a chemo side effect, that I could get back my old snap, but that doesn’t seem to be the case.

In fact, I have two issues. One is long-term memory, as discussed above. I don’t think those memories are so much gone as the filing system in my head that lets me find them is well and truly borked. Because things do float back to the surface after a while. The other is short-term memory. I can forget what I’m doing in the five seconds it takes me to step across the room. Some tasks have to occur to me a dozen times before I can hold onto the thought long enough to right it down for later action.

This isn’t amnesia or dementia. I function just fine on a day-to-day level. And tasks I repeat frequently, such as most of my Day Jobbe duties, or parenting behaviors, or dealing with writing and publishing issues, seem to be okay in my head. This would be continuous reinforcement, I guess. But the one-off stuff, and the old stuff, is irregular.

Which is deeply, deeply frightening to me. Because I don’t know what else I’m missing. I’m sufficiently bright and verbal that most people around me don’t notice the deficits. But I do, except generally after the fact.

I realize that what I’m complaining about is a natural part of the aging process. But at 48 years old, I shouldn’t be losing this much of my cognitive function. The deficits have been substantially accelerated by my years of chemotherapy. And this isn’t even getting into the issues of self-awareness and situational awareness and other forms of cognitive function which have become noticeably compromised for me.

Presumably, having holes in my head is one of the prices I pay for still being alive at all. Perhaps I shouldn’t complain about the bargain. But I am not who I used to be. Which makes me feel like I’m dying by degrees.

I hate this with the burning passion of a thousand suns. Fuck cancer.

[personal] Miscellaneous thises and thats

A bunch of things make a post…

  • Yesterday I agreed to do something very cool in late March, which I’ll be able to announce soon. Suffice to say that if you live in the Portland area, mark your calendars for the evening of Tuesday, March 26th.
  • Likewise, don’t forget my Powell’s reading on March 8th.
  • Shortly I’ll publish a forthcoming events calendar, including my attendance at various cons, a couple of special items, and of course JayCon XIII [ jlake.com | LiveJournal ] on June 15th.
  • I still haven’t gotten a confirmation of my second opinion appointment on the latest evolution of my cancer. This is growing annoying, as my calendar is filling up. The medical stuff takes absolute priority, but I’d assumed (with good reason) it would happen in the second half of February. After that, the cost to me, both literally and figuratively, of rearranging my schedule becomes higher and higher.
  • My Day Jobbe boss is in town today, so I’ll be spending the afternoon and evening with them. This means almost certainly no writing today. I’m basically okay with that, as I just finished drafting “Hook Agonistes”, but I am eager to get on to my next couple of projects.
  • Speaking of finishing a manuscript draft, in case you missed it yesterday, here’s my assessment of the five emotional stages for writers:

    1. Excitement – “Yay! I can has writing!”
    2. Dedication – “Must keep going, must be a good writer.”
    3. Doubt – “Oh, man, this thing is sucking wind. No one will ever buy it or read it.”
    4. Denial – “What, me? What story? Nope, no draft here. Just some fooling around. Never mind.”
    5. Acceptance – “Yay! I can has writing!”

  • Also, yesterday [info]the_child and her mother went to see Swan Lake. They looked very elegant in their ballet togs.

    IMG_4136

Photo © 2013, Joseph E. Lake, Jr.

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[personal] Home again, a good dinner, and miscellaneous updatery

Yesterday Lisa Costello and I drove home from Seattle. This after a very nice brunch with John Pitts, Melissa Shaw and her husband, and Greg Bear and Astrid Bear. We visited with another friend on our way out of town, then hit the road hard and fast for Portland.

[info]the_child was already home from the beach when we got back, so we collected her, made a fast turnaround, and hooked up with Jersey Girl in Portland to admire the new house she and Lisa are sharing, and go to dinner.

We headed for the Good Food Here cart pod on SE Belmont, but on arriving discovered that none of us had thought to bring enough cash. So we wound up at Dick’s Kitchen where elk and buffalo burgers were had by all, along with kielbasa and oven fries with Cambodian garlic sauce. Nobody tried the water buffalo sausage, which I may go back for. (I’ve also had the dork burger there in the past, ground duck and ground pork mixed together, but that’s an occasional special which wasn’t on last night.) Good food and good company for four tired people.

Today I am back at the Day Jobbe where I will spend the next few weeks working on an exceptionally large project. Also, with the new, reduced chemotherapy in play, I am as of now back to being able to drive and have a social calendar. (Hooray!) Somehow the next month’s worth of weekends have rapidly filled up. I’ll even be making a few appearances at conventions and events, including (probably) Norwescon, as well as being Guest of Honor at Gaslight Gathering in San Diego in May.

Also in the department of fun stuff, I will be writing a chapter on steampunk for a forthcoming Writers Digest book on genre fiction. I’ll be doing this after my current novella-in-progress (working title: “Pan, Human”, though I may change it to “Hook Agonistes”) is finished and before I dive back into Original Destiny, Manifest Sin.

So, yeah. Life goes on. Cancer giveth and cancer taketh away.