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[personal] Visiting family and friends in Omaha

I don’t have family in the Midwest, but Lisa Costello does. Yesterday afternoon, some of her kin drove up from Elmo, Missouri. We met them in Council Bluffs, Iowa for dinner. This was the first time I’d been introduced to any of Lisa’s family. It was fun to sit and talk with them about life. She hadn’t grown up with any of these folks, so I didn’t get to hear funny Lisa-as-a-child stories, but I did learn more about her and her people.

We had also met two dear friends of mine for brunch yesterday. Which would have been slightly more successful if I had not gone to the wrong restaurant initially. After some confusion, and a swift drive from downtown out to west Omaha, we got it all sorted out.

And of course, Saturday night after our arrival, we dined with longtime beloved friends [info]garyomaha and [info]elusivem, enjoying some rather good barbecue in scenic Elkhorn, Nebraska.

Dinner tonight with [info]garyomaha and [info]elusivem, the Omaha Beach Party tomorrow night, and Thursday (the actual date of my 49th birthday) there’s a big dinner where my work friends and my social friends will all intersect.

Off to the office a bit later this morning, where I will see more friends and do some, you know, work, in the bargain.

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[travel] And we are away to Omaha

Lisa Costello and I are about to head to the airport for our trip to Omaha. We’ll be visiting the children of the corn, along with the Day Jobbe and whatnot. My actual 49th birthday will pass whilst we’re there as well.

See some, all or none of you in the jewel of the Midwest.

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[travel] Off to Omaha tomorrow

For those playing along with the home game edition of “Where’s Jay”, I am off to Omaha tomorrow. Lisa Costello comes with me. She is interested in seeing my workplace and meeting my social and professional friends there.

The Omaha Beach Party meets next Tuesday, 6/4. (If you’re in the area and want to see me, this is functionally an Open Dinner. Contact me for details.) Thursday, 6/6, is my actual 49th birthday, so we’ll be having a big dinner for me there mixing both groups of my friends. Home 6/7 for, among other things, my family birthday dinner.

See some, all or none of you there.

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[cancer] More details on yesterday’s diagnosis and treatment plan

Per my post of yesterday afternoon [ jlake.com | LiveJournal ], I have received my terminal diagnosis. Here’s the promised expanded narrative.

Read the rest of this entry »

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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)

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[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.

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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.

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[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.

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[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.

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[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.

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