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Jay Lake
Date: 2010-07-21 05:21
Subject: [cancer] Now is the summer of our discontent
Security: Public
Tags:books, calendula, cancer, endurance, health, personal, travel, writing
Well, the PET scan result yesterday was confusing. On Monday, when we met with the oncologist, she was quite convinced this was a metastasis. My oncologist is not an excitable person, she always hedges. This time she didn't. Then the PET on Tuesday showed the growth in my liver failing to exhibit the high level of metabolic activity associated with tumors.

A few things I know, or reasonably assume here.
  • This is not the same place as last year's liver anomaly (several people have asked me that). The old (and still existing anomaly) is buried in the right lobe. The suspected metastasis is in the left lobe.

  • The liver is in the metastatic pathway for colon cancer, along with lungs and the lymphatic system.

  • The logical assumption is this is a metastasis, and CT scan was highly indicative of this. So the PET scan is a puzzler.

  • It would be one heck of a coincidence if I had spontaneously developed a cyst or other liver issue in this timeframe. A welcome coincidence, but very weird.

Once I get a consult with the liver surgeon, I'll know more, but my current understanding is that we'll go ahead with the surgery, then rely on the biopsy to guide what comes next. I find it improbable this is not a metastasis, but the evidence is showing mixed.

Weirdly, in some ways this new ambiguity is more upsetting to me than simply being on the path to another round of surgery and chemo has been. That says a lot more about the quirks of my psychology than it does about medical science.

calendula_witch and I spent quite a bit of time yesterday discussing the implications of all this. I am feeling very vulnerable, all too aware of my own mortality. If this proves out to be a met (which is still my belief), my survival odds have taken another nose dive. They're already pretty spooky, but I do understand the difference between statistics and prognosis.

My fear — and here I am talking about emotional reactions, not logic or sound medical judgment on anyone's part, least of all mine — is that this cancer will continue to be aggressive, and throw mets faster than we can treat them with surgery and chemo; that I'll spend the next few years grinding myself to pieces trying to catch up to something that's killing me slightly faster then we can cure it; that I'll become too sick to work, too sick to write, and within a few years, too sick to go on living.

I recognize I've had all of this news less than forty-eight hours, and mental/emotional whiplash twice already, once with the Monday consult and again with the PET result. This is no time for me to be drawing firm conclusions or making major decisions. Yet the New Zealand/Australia trip impends, Endurance is due, my life hurtles onward, and everything is inflected by this problem.

Ugly mysteries, life and death stakes, colliding schedules and commitments. If I were a character in a book, this would be fascinating. Living through it, not so much...

Good thing I'm seeing my therapist today. Gee, I wonder if we'll have enough to talk about?

Post A Comment | 21 Comments | | Link

User: cathshaffer
Date: 2010-07-21 12:51 (UTC)
Subject: (no subject)
I don't think it would be a terribly surprising coincidence if you had a cyst or a benign mass in your liver. It's quite common, really. Here's a question you might want to ask your oncologist. Is there any chance they can do a needle biopsy on this bad boy without putting you through more surgery? I ask because you might be able to get your answer sooner, and you might be able to salvage your trip to Australia. Going through surgery and recovery again is a bummer.
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Jay Lake
User: jaylake
Date: 2010-07-21 13:15 (UTC)
Subject: (no subject)
I am going to ask, specifically the liver surgeon. What I was told last year when we suspect a liver met was that liver biopsies carry about the same level of risk as liver surgeries, so if we'd had a strong enough suspicion, they would just go ahead and resect.

However, I suspect that statement applied specifically to my still-undiagnosed right lobe anomaly, which is in a part of the liver that is difficult to access. This may not be true of the left lobe anomaly.
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biomekanic: Kachiko
User: biomekanic
Date: 2010-07-21 12:52 (UTC)
Subject: (no subject)
I really hope it's a cyst or something else. Good luck man.

And in the words of those elsewhere on the internet, have a picture of a cute cat.
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(no subject) - (Anonymous)
Jay Lake
User: jaylake
Date: 2010-07-21 13:13 (UTC)
Subject: (no subject)
It seems like a false positive would be exactly the type of thing the PET scan would be intended to reveal.

Well, yes, and that may be where we are right now.
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User: chris_gerrib
Date: 2010-07-21 13:50 (UTC)
Subject: (no subject)
new ambiguity is more upsetting to me than simply being on the path to another round of surgery and chemo has been. That says a lot more about the quirks of my psychology than it does about medical science.

Personally, the "not knowing" would bug me all to hell. I think the human mind dislikes uncertainty more than anything - even bad news.
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User: joycemocha
Date: 2010-07-21 13:53 (UTC)
Subject: (no subject)
One reason I'm unclear about whether the cancer that killed my mother originated in either the stomach or the liver is that the autopsy results based on one type of examination said stomach, with metastasis to the liver while results based on another type of post-mortem exam said liver, metastasis to the stomach. Our original assumption/diagnosis was liver.

That said, she was much, much sicker than you've been and it came on much more quickly, in the course of six months (originally she went in for kidney failure, was resolved, never felt right afterward, four months later the cancer was discovered and two months later she died). They tried one dose of chemo, and it was so awful they stopped it since she was clearly too sick to put through chemo. But again, that was 24 years ago.
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User: adelheid_p
Date: 2010-07-21 13:57 (UTC)
Subject: (no subject)
My thoughts are with you. I know that the ambiguity is really worse than a certainty.
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it's a great life, if you don't weaken
User: matociquala
Date: 2010-07-21 14:05 (UTC)
Subject: (no subject)
I always find that not knowing is worse than knowing, even when the knowledge is bad.

I think that may be universal.
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Kari Sperring
User: la_marquise_de_
Date: 2010-07-21 14:13 (UTC)
Subject: (no subject)
Your feelings about this make perfect sense to me: indeed, what strikes me above all is that you can still write about it so clearly. You are most certainly a stronger man than I.
And what matters most in it all is you: what is best for you, what works for you, what you need. The rest can wait.
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Elizabeth Coleman
User: criada
Date: 2010-07-21 14:16 (UTC)
Subject: (no subject)
Not knowing is maddening to me, and probably to our entire society, since we're such a bunch of control freaks. In my case, I like knowing things so I can send them through the proper mental processor. Now, this bit of not-knowing is just going to sit around, unprocessed, festering. Like this weekend--should I treat it like it might be my last workshop with you, or not? It wouldn't even affect my actions, but it would help my coping process.
That said, ultimately, a spark of hope is more welcome than not, even if it is sitting on a high ledge taunting us.
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User: dionysus1999
Date: 2010-07-21 14:16 (UTC)
Subject: (no subject)
What a roller coaster. This skeptic will be chanting "no cancer" for the next few weeks.
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W. Lotus: Peaceful
User: wlotus
Date: 2010-07-21 14:19 (UTC)
Subject: (no subject)
Something tells me your therapy session will be quite lively.
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User: keikaimalu
Date: 2010-07-21 14:34 (UTC)
Subject: (no subject)
I think it's easier to brace against known ugly news than deal with uncertainty.

One day at a time, eh? Right here, right now, you have things to do to occupy yourself. Right here, right now, you're living your life.
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User: yourbob
Date: 2010-07-21 15:13 (UTC)
Subject: (no subject)
Along the vein others have mentioned above, the unknown is always scarier than the known.

Just think - is it more "exciting" not knowing about Norman Bates' mother or knowing?

"Jaws" just celebrated an anniversary and the "retrospective" things I've happened upon, everybody says that if the shark mechanical had worked, it'd be a much less tense movie.

Appendages continue crossed and good thoughts in your direction.
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Steve Nagy
User: stevenagy
Date: 2010-07-21 15:27 (UTC)
Subject: (no subject)
I'm a firm believer in coincidence, so I'll think positive thoughts, as I'm sure everyone else is doing.
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User: madrobins
Date: 2010-07-21 15:41 (UTC)
Subject: (no subject)
...this new ambiguity is more upsetting to me than simply being on the path to another round of surgery and chemo has been. That says a lot more about the quirks of my psychology than it does about medical science.

If so, then your psychology and mine are remarkably similar in this regard. Yesterday you had a definite idea and a definite plan. Today, it's still more "wait and investigate and then we'll know better." That uncertainty would be--to me at least--loud enough to drown out the potential for optimism, at least for the moment. Hang in there. I hope your liver is just doing something ridiculous to get your attention, so that it gets some love too. Organs are like that.
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User: alleypat
Date: 2010-07-21 15:53 (UTC)
Subject: (no subject)
did my comment post? gah. I was saying, I had a cyst on one kidney while I had all those tumors (15 or so, we stopped counting). Far as I know, still have the cyst. It's something they are "watching" but otherwise, all is well. Cysts do happen. good luck and hugs :)
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User: dsgood
Date: 2010-07-21 15:59 (UTC)
Subject: (no subject)
Sending good thoughts.
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Douglas Cohen
User: douglascohen
Date: 2010-07-21 17:12 (UTC)
Subject: (no subject)
Hoping for the best ...
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Samantha Henderson
User: samhenderson
Date: 2010-07-21 18:28 (UTC)
Subject: (no subject)
I've had several friends/relatives with similar diagnoses that had scans showing wildly varying results. Sometimes the outcome was one, sometimes another.

I completely understand the ambiguity being the worst part. I hope the waiting is endurable, and the result good.
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User: fledgist
Date: 2010-07-22 12:46 (UTC)
Subject: (no subject)
Sending good thoughts. It's got to be rough.
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