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Jay Lake
Date: 2013-04-13 08:01
Subject: [cancer] So I've been thinking
Security: Public
Tags:cancer, family, friends, health, personal, publishing, work, writing
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.

Post A Comment | 25 Comments | | Link

User: threeoutside
Date: 2013-04-13 15:07 (UTC)
Subject: (no subject)
Your friends and loved ones are all around you, even in the dark. *hugs*

Wish I could do more.
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User: madrobins
Date: 2013-04-13 15:25 (UTC)
Subject: (no subject)
If there is anything--beyond love, admiration, and a willingness to listen--that I can do to help, you have it. Fuck cancer.
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crows o'clock
User: sheistheweather
Date: 2013-04-13 15:53 (UTC)
Subject: (no subject)
I don't know what to say, other than "Fuck cancer". I'm keeping you in my thoughts.
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User: fjm
Date: 2013-04-13 16:06 (UTC)
Subject: (no subject)
Do you know Dylan Thomas's Do Not Go Gentle into That Good Night? It's refrain is "Rage, Rage against the dying of the light". Works for me. We are allowed to rage.
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Debbie N.
User: wild_irises
Date: 2013-04-13 16:30 (UTC)
Subject: (no subject)
I think of you more often than you can imagine. I hope for best outcomes every time you cross my mind.
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User: joycemocha
Date: 2013-04-13 16:32 (UTC)
Subject: (no subject)
No words available. Just--hugs.
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User: mlerules
Date: 2013-04-13 18:00 (UTC)
Subject: (no subject)
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User: swan_tower
Date: 2013-04-13 18:03 (UTC)
Subject: (no subject)
Friends can't push this back, but we can at least stand with you.
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User: martianmooncrab
Date: 2013-04-13 18:10 (UTC)
Subject: (no subject)
what to do with all the books in my personal library

I would like to take mine with me, in a proper Egyptian Tomb Burial, but thats not likely. They could build it out of books for that matter.

I am still hoping the sequencing will bring some new treatments.
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Rhonda Parrish
User: rhondaparrish
Date: 2013-04-13 19:08 (UTC)
Subject: (no subject)
I feel for you. For you and your family. I wish I could do more. Alas.

Fuck cancer.
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User: klwilliams
Date: 2013-04-13 19:09 (UTC)
Subject: (no subject)
This sucks so much. I'm so sorry.
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User: mevennen
Date: 2013-04-13 19:16 (UTC)
Subject: (no subject)
Our very best to you.
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User: deborahjross
Date: 2013-04-13 19:17 (UTC)
Subject: (no subject)
It occurs to me that one of the excruciating challenges of "end of the tunnel blues" is to walk through all the emotions -- rage, despair, sorrow, hope -- and the thoughts, which are at times mutually exclusive. How can we approach our medical condition rationally when our emotions threaten to overwhelm us? How can we feel deeply, intensely, and still remain rational? How do we stay fully alive and fully human?
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LiveJournal: pingback_bot
User: livejournal
Date: 2013-04-13 19:34 (UTC)
Subject: When Your Friend Is Dying, perhaps the first part of several
User deborahjross referenced to your post from When Your Friend Is Dying, perhaps the first part of several saying: [...] I've been following 's cancer blog [...]
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User: leela_cat
Date: 2013-04-13 19:56 (UTC)
Subject: (no subject)
There's nothing I can do but offer virtual hugs and the knowledge that people care about you.

♥ hugs ♥
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Kari Sperring
User: la_marquise_de_
Date: 2013-04-13 20:07 (UTC)
Subject: (no subject)
Much, much love
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User: emmainfiniti
Date: 2013-04-13 23:19 (UTC)
Subject: (no subject)
I am so sorry, Jay.
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User: lindadee
Date: 2013-04-14 00:19 (UTC)
Subject: (no subject)
Words fail.

FUCK cancer.
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User: adelheid_p
Date: 2013-04-14 00:53 (UTC)
Subject: (no subject)
I am still here, even if I am mostly silent. I can't do more than say this really and truly sucks and I wish it could be different.
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curious Eve
User: curiouseve
Date: 2013-04-14 01:57 (UTC)
Subject: (no subject)
Thank you for being honest and clear.
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User: Jeff P
Date: 2013-04-15 14:56 (UTC)
Subject: (no subject)
I've been praying for you, Jay. I hope that doesn't offend you. I'm not even sure _I_ believe prayer works. But I have nothing else to offer except moral support.

You are being much braver than I would be in the same situation. Your honesty is appreciated.
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Jay Lake
User: jaylake
Date: 2013-04-15 15:15 (UTC)
As an atheist I do not pray. As a human being, I completely appreciate the significance of prayer to those who hold faith. So, yes, thank you for your prayers. I am not the least bit offended.
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User: kellymccullough
Date: 2013-04-15 18:13 (UTC)
Subject: (no subject)
Fuck cancer all to hell and back. Very sorry to hear this. Sending thoughts of comfort and support.
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frabjouslinz: Me Street
User: frabjouslinz
Date: 2013-04-16 21:20 (UTC)
Subject: (no subject)
Keyword:Me Street
I am sorry, Jay. I am thinking about you every day. If you need to rage, or despair, or be raunchy and inappropriate, I'll stand with you and scream or cry or laugh uncomfortably, as it happens. Maybe all at the same time. Love to you.
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