[cancer] Field notes from Cancerland, Rio Hondo edition
I’ve spoken to the specialty pharmacy, and my Regorafenib should be arriving in Portland today. To my mild surprise, they are treating this as a pharmaceutical co-pay in line with the insurance company formulary. This is often not the case with specialty pharmacy prescriptions, I’m told. I’ll start the medication next Monday when I’m back in Portland. Apparently, the side effects are a real treat.
The Nebula Awards Weekend
I’m still parsing the Nebula Awards Weekend from an emotional perspective. I’m not hung up on losing the Best Novella Nebula — that’s just the way the game is played. Rather, as I said the other day, I’m struggling with my sense of being on a farewell tour. It really was a terrific weekend in a number of ways, but the reality of my foreshortened mortality is starting to grind me down.
That same reality of foreshortened mortality is grinding down the people around me as well. This is creating drama among my immediate circle of family and friends. I am very ill-equipped to handle that sort of drama. I dislike it in general, and right now my reserves are stretched so thin that dealing with such things is a profound distraction. There will only be more of this down the road as well all respond to my deepening illness.
Those aforementioned reserves really are an issue. I have no depth these days. Anything small can upset me. I don’t have the bandwidth to do everything I want. I frustrate easily, and have trouble tracking and staying with both emotional issues and projects. Right now I cannot tell if this is stress from the new diagnosis, which at some point I’ll integrate, or if this is my new reality. I resent every step of loss.
[events] Rio Hondo, day three
More critique yesterday. More food. More fun. My Aunt M—, who lives in Colorado, turned up with pies. @dratz of Waterloo Productions arrived last night to shoot some Lakeside footage here at Rio Hondo.
My METAtropolis: Green Space novella “Rock of Ages” is being critiqued tomorrow. This means I don’t have to do any critical reading today, so I’m cooking momos [ jlake.com | LiveJournal ] for tonight’s dinner.
Still struggling a bit with the altitude. Had a terrible night’s sleep last night. I did okay the night before, thanks to my friend Lorazepam, and will probably have to do that again tonight. And I regret not being able to go out hiking here during the day, as my UV issues from Vectibix linger on.
All that being said, I am very glad to be here.
[cancer] Being there, at the Nebulas
So, the Nebs. I’m still processing a lot, specifically in the context of my cancer journey. I can’t shake the feeling that I’m going on my farewell tour these days. Which is essentially true, barring some extremely unexpected developments. Even if I hang on past the current prognosis, I’ll either be wrapped in the misery of treatment or I’ll be wrapped in the misery of my terminal decline. I don’t expect to travel again much if ever after this summer. That means that while it’s reasonably possible I’ll still be alive at the time of next year’s Nebula Awards Weekend, it’s highly improbable I could attend.
Everyone who knows me knows this, too.
I received an amazing amount of well wishing. Almost all of it was delivered tactfully. I got to have worthwhile conversations with most of the people present whom I know personally. I got to see a lot of a few people, and a little of a lot of people. I had hella fun, as did my family and friends. But all of those memories are overlain by sadness.
At least I lived long enough to go as one of the nominees. This is something I’m quite proud of. And it was very gratifying to be able to give Aliette de Bodard her well-earned short story Nebula.
But beyond that rather pointless melancholy, I can’t yet tell you what it means. I can only tell you I was present, at this time my life.
Sometimes that’s enough.
[conventions|photos] My day two of the Nebula Awards Weekend
Yesterday was my second and final day at the Nebula Awards weekend. Not to bury the lede, the award in my ballot category of Best Novella went to the excellent Nancy Kress for After the Fall, Before the Fall, During the Fall.
My parents and
There was a comic convention going on next door, so some crossover happened.
Still we had fun.
And though I did not win, I got to give away the Best Short Story Nebula to a charmingly shocked Aliette de Bodard.
I’ll post more later about the emotional experience of this weekend, and how it has intersected with my illness. For now, suffice to say I had an amazingly good time. My family was pretty happy to be there. My thanks to chair Dave Gallaher, SFWA President John Scalzi, and everyone who worked so hard to make this all come together as fantastically well as it did.
[conventions|photos] My day one of the Nebula Awards Weekend
Yesterday, Jersey Girl in Portland flew down to San Jose. We ran into Richard Lovett on the plane, and shared a cab to the convention hotel. Once there, the afternoon became a blur of old friends and new that I couldn’t possibly do a sane job of listing. At the author signing, I was seated between John Scalzi and Joe Haldeman, with Connie Willis and Stephen Gould on the far end, safely out of range from me. Signing was busy and a lot of fun
Post-dinner, we hit the reception at which the Nebula nominee certificates and pins are handed out, along with drinks and photography. It was fun to stand with Aliette de Bodard, Ken Liu and Lawrence Schoen. We were only missing Nancy Kress. And I am in awe of both Aliette and Ken for their across the board strength on the award ballots this year.
Eventually I retired early for a crappy night’s sleep.
Tomorrow, I am off to Rio Hondo at the crack of doom.
[writing|travel] Off to the Nebs, then Rio Hondo
Yesterday Lisa Costello departed for New Mexico, where she is attending a conference in Santa Fe. This morning, Jersey Girl in Portland and I skedaddle to San Jose for SFWA’s Nebula Awards Weekend. My Dad and (step)Mom will be there tomorrow, as will my Aunt B— and Uncle L— from Texas.
I’ll do some socializing and maybe some business whilst in San Jose, then I’ll have the fun of watching myself lose the Nebula. Let’s put it this way: I don’t even have an acceptance speech prepared. In the extremely unlikely event that I win, I’ll wing it. Luckily for both me and my potential audience, I am ferociously good at winging it.
Crack of Sunday, I light out for New Mexico my own self. This trip is completely unrelated to Lisa’s, as I am heading for Rio Hondo, but our automobile will pause whilst passing through Santa Fe on the way from Albuquerque to Taos for us to have a snack and visit with Lisa, who by amusing coincidence will still be there. After that, I’m for a week at Rio Hondo. (I’m not sure about the connectivity at Rio Hondo, so blogging may be erratic next week.)
All in all, a very good ten days or so coming up.
[cancer] Field notes from Cancerland, heading out of town tomorrow edition
Generosity of Spirit
More generosity flows my way. @howardtayler has done some amazing things for me this week, with an able assist from his colorist Travis Walton. Howard teases his work here. Suffice to say this will be public soon, and you can all marvel at Howard’s skill and wit, and understand how impressed and humbled I am by his support.
Yesterday’s airline mileage appeal was a bit of a fiasco. I’d not checked into the airline policies for a while, and they have both monetized and restricted mileage transfers between private individual. Thank you so much to everyone who made the effort. Another reader found points.com, which I will be investigating today or tomorrow in hopes of arriving at a more useful solution. In the mean time, the original Big Project has proceeded down another path. I have several other Worthy Projects in mind, so if I can get this straightened out, the appeal will continue, albeit on slightly different terms.
I’ve been told that my prescription for Regorafenib has been approved. This drug is a specialty pharmacy item, which means it falls outside the usual infrastructure of pharmaceutical benefits. This includes pre-approval letters and me dealing with a designated mail order pharmacy for my medication supply. It also potentially included a whopping co-pay, but it turns out my carrier’s pharmacy plan treated this as simply being at the high end of the formulary. Which is modestly annoying, but that’s same $50 co-pay I have for Celebrex, Levitra, et cetera.
My Next Scan
I have been corresponding with my oncologist about my next CT scan. Those are supposed to be eight weeks apart right now. That’s the minimum spacing recommended for clinical benefit. I also believe there are significant radiation exposure concerns with excessive scanning. In my case, I won’t live long enough to experience that set of problems, but nonetheless the health and safety guidelines exist. The problem is, they want me to have the next CT scan eight weeks after I start taking the Regorafenib. As I am going out of town tomorrow for eleven days — the Nebulas in San Jose, then Rio Hondo in northern New Mexico — I won’t be able to start taking the Regorafenib prior to May 27th at the earliest. And even that date assumes the specialty pharmacy comes through in a timely manner. Which puts me to eleven weeks or longer between CT scans. And creates the situation that we have 3+ weeks of tumor growth prior to the beginning of any hoped-for effects from the Regorafenib. I think we’d have both a growth rate assessment and a clean baseline for evaluation the new medication if we did a scan shortly after May 27th, but that is far too soon per the generic clinical guidelines. No answer yet, but it’s one of the things I’m worrying about.
Tasking All the Things
Remember that big list of mine, of things that need doing before I die? [ jlake.com | LiveJournal ] Well, it’s grown. And we’re doing them. So an enormous amount of administratrivia is happening around Nuevo Rancho Lake. So far, most of the customer service reps, managers and whatnot we’ve dealt with have been very gracious. I feel like Robert DeNiro’s Harry Tuttle in Brazil [ imdb ] being consumed by paper. Still, progress is being made.
I’ve had several people note that I’m pretty cheerful lately. The not very hidden subtext is them wondering why I’m not wailing and rending my garments. Honestly, I’m not sure why I’m not wailing and rending my garments. I suppose because there’s no time for that sort of thing. I don’t have much life left to live, especially in something like normal health, and I have too much to do. Love my child, write my stories, be good to Lisa Costello and Jersey Girl in Portland and mother of the child and my family and my friends and my fans and my co-workers and and and. It is true that my current good nature is a very thin veneer, subject to cracking at even a glancing blow. Beneath that is a bubbling stew of anger, grief and terror, spiced with a catalog of other negative emotions. Nonetheless, here I am. And forward is the only direction for me.
Thank you all for reading, for caring, for reaching out.
[photos] Cancerversary party
Yesterday afternoon I had a cancerversary party with family and friends. We ate good food and spent time just hanging and talking and celebrating my continued survival after five years of Stage IV metastatic colon cancer. It was fun to be together.
Some photos of some of the folks who were there…
[cancer] Field notes from Cancerland, weekend addendum
Forward Planning Redux
The crew for this morning’s disability planning meeting has grown. Six of us are meeting for breakfast to go over a number of financial and care issues. I’m not pulling the trigger right now, but I am trying to get all my ducks in a row so that when the time comes, we just push a few buttons (so to speak) and launch the process. The crew is Lisa Costello (my primary caregiver) my dad (who as a retired senior Federal official has been handling a lot of my paperwork for a while),
The somewhat postponed cancerversary party for family and close friends is tonight. It has acquired a deeply ironic spin, given that when I scheduled it we knew nothing of the new diagnosis. Still, we will be celebrating five years of survival. Regardless of what comes next, what we’ve already accomplished is amazing.
Back on the Horse
As of yesterday, I’d bounced back far enough from my ‘splat’ to both do some writing (well, editing, but that counts) and clear some more of the backlog of ongoing paperwork in the house. So that’s good, yes?
Seeing the Doctor (again)
Yesterday morning, Lisa Costello, Dad and I met with my primary care physician. We reviewed the likely course of liver failure, discussed late life and end-of-life treatment options and care decisions, and they referred me to a palliative care specialist for further preparatory discussions. We didn’t really learn anything major and new, but we confirmed much of what we’d thought and put a better framework on it.
Seeing the Oncology Nutritionist
We also met with the oncology nutritionist to discuss how best to eat during liver failure. Much of it is common sense, though the two elements that were new to me were a strong recommendation to multiple small meals, which I have certainly heard in other contexts; and a recommendation to rebalance to less protein and more carbohydrates. They also recommended cheese. Mmm, cheese.
My Mental and Emotional State
I continue to process all this in dribs and drabs. I don’t suppose I’ll ever finish that effort, I’ll just die somewhere along the way. As I’ve said before, no matter how much you expect something like this, it is still a shock when it comes. And there is so much to do. All that “to do” is good for me, it gives me a focus and some purpose. But I can’t help seeing that not only is there no light at the end of the tunnel, the tunnel simply ends not too far ahead of me.