?

Log in

No account? Create an account
[cancer] Field notes from Cancerland, San Antonio edition - Lakeshore — LiveJournal
An author of no particular popularity

Jay Lake
Date: 2013-04-12 06:27
Subject: [cancer] Field notes from Cancerland, San Antonio edition
Security: Public
Tags:audio, awards, cancer, conventions, events, health, personal, podcasts, texas, writing
Podcast

Yesterday, Mendelspod put up a 20+ minute podcast interview with me and Dad about cancer and the Whole Genome Sequencing. We listened to it in the car on the way down from Austin. I had a terrible cold the day we recorded it, and don't sound like myself at all. Still, my comments were clear and cogent for the most part. Worth a listen if you're following along here for the cancer news.

Dreams

Had a difficult dream last night which was a somewhat metaphorical review of the thoughts I've been having lately about the likely imminent wind down of both my writing career and my life as a whole. Specifically, the casting off of things both virtual and real. That intersects with my discussions with @lynnemthomas about the archiving process and how my mortality inflects that. Plus a lot of difficult thoughts about this week's cancer news were creeping in.

Time

I am running out of time. If the cancer news is as seems likely, I'll be back in full treatment before the end of May. That means by the end of June or so, I'll probably never leave my house again in my life except for medical points and a few very constrained social engagements. This also means that I have around two months of productive writing time left in my entire life. There is nothing surprising about this, given the trajectory we've been on since the January discovery of all those additional tumors during surgery, but it's still horrifying, depressing and disappointing. I have a lot more to say about this, but my thoughts haven't coalesced coherently yet. Plus we're still shooting in the dark until the May 7th scan.

Being Out in the World in My Writer Persona

Per the above, my opportunities to infest the wider world with my writer persona are likely very limited. I'm terribly pleased to be here at Paradise Lost, and to be going to the Nebula Awards Weekend, but I'm also having a sad and greedy end of the party feeling. My sense of impending loss is huge right now, but I'm also savoring every minute I can of this.

Post A Comment | 8 Comments | | Link






fjm
User: fjm
Date: 2013-04-12 14:31 (UTC)
Subject: (no subject)
Just out here, reading this. Being one of the people who loves you. xxx
Reply | Thread | Link



Keikaimalu
User: keikaimalu
Date: 2013-04-12 15:03 (UTC)
Subject: (no subject)
This struggle sounds like such a terrible burden.

I want to say, too, that for me, you're mapping out an uncharted land, and that map will likely be useful to a lot of people in the fullness of time, as they find mortality crawling toward them in a more and more definite way.

Your transparency about all that you're going through emotionally feels like guideposts that may help the rest of us find our way through rough terrain someday. These are terrifying places that most of us can't really tolerate even thinking about, and I feel like you're giving us some landmarks to ease that terror just a little bit. We'll know, from reading your writings, that we're not the first to travel those roads, and that will help us feel a little less alone.

I'm really sorry you're going through this. I wish you weren't. But given that you are, I'm grateful for your honesty and your generosity.
Reply | Thread | Link



User: deborahjross
Date: 2013-04-12 16:31 (UTC)
Subject: (no subject)
We're with you.
Reply | Thread | Link



Kari Sperring
User: la_marquise_de_
Date: 2013-04-12 17:51 (UTC)
Subject: (no subject)
Much love,
Kari
Reply | Thread | Link



Msconduct
User: msconduct
Date: 2013-04-13 10:50 (UTC)
Subject: (no subject)
Very interesting podcast.

I don't know where you are in terms of considering clinical trials - whether you've decided against (and God knows anyone who says "You've got nothing to lose!" hasn't considered the tradeoff of loss of family time) or whether you're holding off considering them until after the gene sequencing result is in. However, if you are interested in them, now or at any stage, I would be delighted to go looking for what might be available and compile a list. Googling is my superpower and I think I have a reasonable handle on your clinical situation which would help sort through what may be an option. I know the people around you are incredibly busy, like your Dad with all the insurance stuff, so if this is something nobody else has time to do I would be happy to do it anytime.
Reply | Thread | Link



Jay Lake
User: jaylake
Date: 2013-04-13 15:02 (UTC)
Subject:
Thank you. I may well take you up on that.
Reply | Parent | Thread | Link



Msconduct
User: msconduct
Date: 2013-04-13 23:41 (UTC)
Subject: Re:
OK. I've had a preliminary look so I know where to go if/when you want the information. The brief overview is that it's not difficult to find the information but there are a lot of data to churn through, both in terms of eligibility criteria and in terms of the study status (it seems many studies simply stop filing status updates, making it unclear as to whether they are still recruiting). All of that, however, is dealable with. Any time you would like more info, drop me a line at msconduct@androzani.com and I will go to work. From what I've seen of the eligibility criteria, you might find it most useful having the information in hand as you make treatment decisions, as many of the studies require that you have had no other intervention in the previous x weeks.
Reply | Parent | Thread | Link



Jay Lake
User: jaylake
Date: 2013-04-14 19:28 (UTC)
Subject: Re:
Thank you.
Reply | Parent | Thread | Link



browse
my journal
links
January 2014
2012 appearances