[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.

55 thoughts on “[cancer] So I’ve been thinking

  1. Ben Fenwick says:

    I don’t know what to say other than how much admiration I have for you, flinging your intelligence and honesty at the dark creature. I wish there was more to say or do.

  2. Jake says:

    Have you thought about this? http://tiny.cc/qhlhvw

  3. I want to be supportive, I do, but all I can offer are hugs, and good thoughts, and a place for The Child should she ever need to hide from the world for a while.


  4. Alexis says:

    Words fail me Jay.

  5. Harald Striepe says:

    I have been disease free for four years (March 28). But I believe, we always live under Damocles’ sword, we all do. All of my extended previous generation has had cancer impact. Both my parents died of it. My grandmother did. Now my aunt is suffering from it, etc. etc.

    All of our days are numbered. But knowing of a shortened horizon is very frightening and maddening.

    Jay, consider moving past anger to acceptance to live in peace. It does not mean giving up hope, or continuing to strive and make the best of it. I am certain, it will vastly improve your QOL. The urgency makes every moment of life taste sweeter.

    If/when the excrement hits my fan, it is what I have resolved to achieve first of all. I think about it every day, without anger or fear. It is part of birth, life, and death.

    — Harald

    1. Jay says:

      Harald, for whatever it’s worth, I don’t consider myself particularly bitter on angry. Not in general. I have those days, of course. All this thinking out loud and fussiness is my path to acceptance.

  6. pelican says:

    Thanks as always for sharing your process.

    I wish things were different for you.

  7. Barbara Winter Selden says:

    So fucking sorry, Jay. Cancer is the world’s biggest asshole. I keep praying the genome project turns up a previously undiscovered option. Only went through chemo once, but having done so, I have some idea what it would take to face it again. and again. and again. Not sure I’d do it. Commend you for the bravery I know it takes. Just wish you didn’t need to be so fucking brave so consistently. Peace, my friend.

  8. Ruthie says:

    *hugs* (((Jay)) I’d give you a new liver and bone marrow or stem cells or something, anything if I had them to give. Don’t forget that you’ve accomplished a lot more than many and that you have the love of your family and many friends and you live life to the fullest. You live in the moment and you live it well. Keep doing that!

  9. Jay, you are STRONG! Stronger than you think!!! Hold on with your great untapped strength, like a storm and a hurricane and a mountain and the entire boundless ocean of YOU, and fuck cancer!

  10. Jim Crider says:

    There’s not a damn thing I can say about this beyond I’m sorry you’re having to go through all this, and I really wish it was different.

  11. Donna Hanson says:

    Dear Jay
    I am thinking of you.

  12. Hang in there, Jay. You’re allowed to be afraid and unhappy about this, but we’re all pulling for you and using every celestial favor we have to help extend your life however we can! Much love, Tamara

Comments are closed.