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[cancer] The nuts and bolts of my mortality issues - Lakeshore — LiveJournal
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Jay Lake
Date: 2012-08-29 05:35
Subject: [cancer] The nuts and bolts of my mortality issues
Security: Public
Tags:cancer, child, family, friends, health, personal
It's taken me a while to draft this post, because I've needed to organize my thoughts and speak privately to my family. This is pretty serious stuff.

In short, my best, somewhat educated guess, is that I've got about two to four more years to live.

This is based on several things my doctors told me, plus research support provided by two very knowledgeable friends with experience in clinical matters and access to literature searches. It's also a topic I plan to pursue during my Johns Hopkins consultation on September 7th.

The fundamental issue is that the more often the cancer comes back, the more likely it is to return again. Both my oncologists believe I'll be back sometime in the next twelve to eighteen months with new metastases. (As my medical oncologist said, "We'll be having this conversation again next year.") The opportunity for a full cure is not completely closed off, but the odds, already low prior to this metastasis (in the 20% range) have shrunk considerably further. Essentially we'll keep fighting it until we run out of treatment options and/or the cancer comes back aggressively enough to not be amenable to full treatment.

My surgical oncologist observed that five years might be possible, ten years would be miraculous.

So while I don't have a terminal diagnosis now, and don't expect one in this treatment cycle (given the currently understood situation), I do expect to get one eventually.

One significant factor is that there may be another bullet coming for our chemo 'gun'. That extends things by another 12-18 months if it proves fruitful. Once I do arrive at the point of having an unresectable or otherwise untreatable tumor, I'll still have about 6 months or a year from that event.

My expectation is that I'll spend more than half my remaining life in treatment or in late stage cancer, meaning I'll be sick a lot more than not from here on out until the end. It is course possible we'll still hit a cure, or at least a longer period of good health along the way, but that possibility is much diminished.

In terms of what's likely to happen, there are multiple paths from this point, actually. I'll excerpt an email from one of my research-oriented friends discussing them.

The upcoming medication your doctor mentioned will be a treatment option if you have another presentation for which chemo is appropriate - because either it will be approved by then, or you will eligible under compassionate care exemptions through the drug company and FDA. You wouldn't be eligible for that now, because you still have approved options left on the table, but you would be at that point. So I would assume that as chemo round #4. Then, even after that, you'd be eligible for clinical trials. That may or may not be something you'd want to pursue at that point, since some would require temporarily moving out of state and the marginal survival benefit is usually on the order of months - but it would definitely be an option open to you. There are always promising clinical trials for late stage colorectal cancer going on.

There are also two key things that affect both how long treatment will last, and how many months it buys you until the next recurrence - whether the tumors are resectable, and whether they respond to the chemo option available. So far, all of your metastases have been resectable, and I think there are good odds that would continue for at least another round or two. And even with unresectable metastases, there are basically two categories - limited site (liver only or liver + lung) which are unresectable only because of size and location, and full blooms. For the former, chemo and/or radiation can sometimes convert unresectable to resectable. For the latter, generally not so much, although sometimes there's enough of a response that an argument can be made for surgery with a "buy me some months of feeling better" goal rather than a curative goal. For chemo response, it's obviously a continuum, but let's say you could have a good response (tumor shrinkage) and partial response (growth essentially halts but tumor doesn't shrink) or a poor response (no meaningful effect).

So that breaks down to categories like these:

1) resectable mets and responds to chemo - this is what you've had so far, and what lines up pretty well with your time assumptions.

2) Resectable mets but doesn't respond to chemo - in this case, your doctors would probably advise stopping chemo halfway through, and your chemo bounce back would be quicker without as many cumulative hits. On the other hand, predicted time to next progression would likely be shorter, more like 6-12 months, depending on how good the margins were at surgery.

2a) This would also be the case if you threw resectable mets at a future recurrence and there were no reasonable chemo options left on the table. As your surgeon has pointed out, you can actually keep going round after round like that for awhile.

3) Initially unresectable mets that convert to fully resectable after response to chemo. This still might give you a good 12 months before the next recurrence, but the total treatment timeline may be longer and a bit tougher than #1.

4) Unresectable mets that respond to chemo but still aren't surgically addressable, as might be the case with a bloom that responds to chemo. Treatment and recovery timeline is shorter without surgery, but time to next progression is likely to be much shorter, with new mets possibly presenting soon after chemo ends or even during chemo - which means that there may be no real downtime between recovery and the next round.

5) Unresectable mets that don't respond well to chemo. Depending on where they are and how fast they grow, this might be in a 3-10 month survival range, although there are definitely people who've made it more like 18 months. A round like this might start out with a few months of chemo, while you are still trying to figure out if it is a #3-4 vs. #5, but then you'd probably be off the chemo once it was clear you weren't responding -- or it's possible that if you hit #5 several rounds down from now that you and your doctors might decide that going at it with another round just wasn't worth the marginal payoff. Either way, a good chunk of that range in this category is likely going to be chemo-free, unless you elect to participate in one of the clinical trials that is just for people with unresectable, unresponsive mets.

So where you are right now is either a 1 or a 2 on this list. If it ends up being a 1, I'd expect your next round to most likely be a 1, 2, or 3. If it ends up being a 2, you could be looking at anything from 2-5, although at this point I still think the most likely pathways would have #5 being another round or even two out from that point.


In short, it's unpredictable, but there's not a substantial foundation for optimism.

I've been doing a number of things with this information. In no particular order…

  • Looking at my current and proposed writing projects with an eye toward triage. I may have to cut some off, push others to collaborators, then prioritize the remaining ones. My current best guess-within-a-guess is that I have 12 to 24 months of productive writing time left, working around bouts of illness and treatment. How do I want to spend that time? I'm meeting with my agent while we're both in Chicago this week to get her views.


  • Looking at financial and insurance aspects of this. My father is helping research disability benefits. My HR department at the day jobbe is being very supportive, as is my manager. I have options for short term disability and long term disability. At some point before I'm completely burned out by illness and treatment, I'd like to be able to go on LTD to spend my last time with [info]the_child and working on books until I can't do that any more. Likewise, some financial changes may have to be made. Money is already tight and will only be getting tighter. So, for example, borrowing ahead of time against my life insurance payout to clear my debts and settle my finances while I'm still alive, with the goal of making those transitions easier for my survivors.


  • Thinking over my own sense of priorities and what I want out of my time.


  • I am planning to add a book to my project list. I want to start writing it either in the near future, or when I get a more adverse/terminal diagnosis. The book will document my process of dying. I'll write until I cannot. Then I'll dictate until I cannot. Then someone else will have to take over through the moment of my passing, and finish it as a posthumous collaborator. I've been making a literary art project of my illness these last four and a half years, this is a logical extension of that effort, and will allow me to extract something of value out of this otherwise horrible mess.


  • On a related note, Waterloo Productions and I are discussing an extension of the film project to run in parallel with the book project. Some people in my circle of family and close friends are uncomfortable with the way I publicly discuss all this, but I feel this is very important. To be blunt, it's my life. The only person that gets a real vote besides me is [info]the_child. Everyone else can decide whether and how they want to be a part of that footprint.


Last night, i had a long talk with [info]the_child about all this. That was one of the most difficult conversations we've ever had, and one of my toughest parenting moments. She understands that my best hope right now is to survive long enough to watch her graduate from high school. She is every bit as angry and sad and confused and frightened as I am, and as everyone in my life is.

I'm not giving up on anything. We will continue fighting vigorously for a cure, for further treatments, for quality of life as well as life extension. I'm just facing the meaning of this latest diagnosis with my eyes open now, while I'm still clear-headed pre-chemo, so that when and if the day comes that all this is made real, I'll be prepared.

Very little of the above requires any action at this point from me or from any one else in my life. What it does require is love, support and understanding.

There will be more to come on this topic as my thoughts continue to develop or new information presents itself.

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Page 1 of 2
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kit
User: mizkit
Date: 2012-08-29 12:58 (UTC)
Subject: (no subject)
Oh, Jay.
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Jon Hansen
User: jonhansen
Date: 2012-08-29 13:42 (UTC)
Subject: (no subject)
Fuck cancer.
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User: tesserae_
Date: 2012-08-29 14:19 (UTC)
Subject: (no subject)
Keyword:table
Jay, you don't even know me as a lurker on your journal, but I've been reading these posts with tears in my eyes and boundless sympathy for your and your daughter... I lost a friend to cancer several years ago, and he'd said, on making the decision to go into hospice, that he hoped we'd all get a sense of how to face our dying with our eyes open from him. I feel like I'm getting that from you, and it's a tremendous gift I know you'd do anything not to have to give!
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zxhrue
User: zxhrue
Date: 2012-08-29 14:29 (UTC)
Subject: (no subject)

::love, support and understanding::

you sir a mensch.

fuck cancer.
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cathshaffer
User: cathshaffer
Date: 2012-08-29 14:34 (UTC)
Subject: (no subject)
You'd better plan on bringing lots of kleenex to your daughter's graduation. Hang in there.
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cathschaffstump
User: cathschaffstump
Date: 2012-08-29 14:45 (UTC)
Subject: (no subject)
*speechless*
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mcjulie
User: mcjulie
Date: 2012-08-29 14:54 (UTC)
Subject: (no subject)
Jay, in talking about the very real possibility of life without you in it, you have caused me to face the very real possibility of life without you in it, and DAMN I AM SAD.

You really are brave. You are willing to stare into the abyss with both eyes open and consciously and deliberately make the best of it.
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Richard Parks: pic#98248748
User: ogre_san
Date: 2012-08-29 15:24 (UTC)
Subject: (no subject)
Keyword:pic#98248748
Fuck. Cancer.

You're handling this a lot better than I would.
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Karen
User: klwilliams
Date: 2012-08-29 15:35 (UTC)
Subject: (no subject)
You're doing all the right things, but I wish like hell you didn't have to.
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mevennen
User: mevennen
Date: 2012-08-29 17:13 (UTC)
Subject: (no subject)
I'm with Karen on this.
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threeoutside
User: threeoutside
Date: 2012-08-29 15:39 (UTC)
Subject: (no subject)
*Hugs*

Nothing else to say. Just, hugs.
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Kate Schaefer: First Icon
User: kate_schaefer
Date: 2012-08-29 16:01 (UTC)
Subject: (no subject)
Keyword:First Icon
Jay, I cheer you on in living. That is, while I see you make practical, sensible plans for your survivors based on a realistic assessment of the odds, I also see you make practical, sensible plans to make the most of the life you have. Live. Write. Travel. Love. Eat cheese.
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Leah Cutter: Ass Kicking
User: lrcutter
Date: 2012-08-30 00:50 (UTC)
Subject: (no subject)
Keyword:Ass Kicking
+1 to this. Also, many many hugs, Jay.
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User: swan_tower
Date: 2012-08-29 17:30 (UTC)
Subject: (no subject)
Keyword:swan
You will have all the love, support, and understanding we can provide.

Fuck. Cancer.
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martianmooncrab
User: martianmooncrab
Date: 2012-08-29 17:30 (UTC)
Subject: (no subject)
My father is helping research disability benefits

Social Security has a list of their compassionate medical diagnoses for SSDI, but the paperwork is a maze, and it works best if you have no assests. I went through that with my cousin after his stroke.
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A wandering fellow on the long road
User: tsarina
Date: 2012-08-29 17:51 (UTC)
Subject: (no subject)
This is hard.
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