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Jay Lake
Date: 2013-04-23 05:44
Subject: [cancer] Carving deep blue ripples in the tissues of my mind
Security: Public
Tags:cancer, health, personal, radiantlisa
Yesterday was a very hard day for me.

First of all, in the morning the OHSU/UnitedHealthcare problem exploded all over my desk again. I finally lost what I consider to have been superhuman patience and pulled the trigger on formal complaints in three directions. (Per my post just now.) That consumed a lot of mental bandwidth and emotional energy, among other things derailing my plans to work on Original Destiny, Manifest Sin over my lunch hour.

In the early afternoon, Lisa Costello and I went over to the infusion center for chemo session four of series four, my 34th infusion. I'm closing in on a lifetime 1,600 hours of being under the needle for chemotherapy. As always, bloodwork was taken.

This is done for two reasons. One is to ensure I'm healthy enough to accept the chemotherapy. So right now they do a general metabolic panel and check my liver chemistry. That happens over the space of ten or fifteen minutes, as the infusion center has a small onsite blood lab. I passed my blood tests, though my chemo nurse noted an elevated sodium level, which is not characteristic of me.

The other reason is to check long term blood chemistry issues, such as my CEA levels. This is of course the tumor marker in my blood. Elevated levels of CEA can correspond to tumor activity. While there are other potential causes of elevated CEA levels, in my personal case they have always correlated with tumor growth. As regular readers of this blog know, two weeks ago my CEAs measured a very sharp uptick, to 6.4 [ jlake.com | LiveJournal ]. Unfortunately, the infusion center's blood lab doesn't include the necessary equipment for checking the CEA levels, so that blood sample is sent offsite for processing.

This means I will not know the results before sometime later today, and more likely sometime tomorrow.

I am back in that peculiar mental state I usually achieve only while waiting for a CT scan. A friend calls it "scanxiety", though it this case it's more like "blood samplexiety". A thing is knowable — in this case, my current CEA levels. A thing will be known once the procedure and subsequent analysis are completed. This thing has a distinct possibility of changing my life in ways that range from "not good" to "fatal".

All of this on top of the mental and emotional blunting that even a relatively mild chemotherapy regimen like Vectibix visits upon me. I'm not sure that at this point that blunting isn't a learned behavior, a psychosomatic expression of the deeper effects chemo has on my body.

I spent much of yesterday afternoon and evening being gloomy and afraid. As I said to Lisa, on my best days I feel like a dime store Buddha, filled with compassion for the suffering of my friends and family through this cancer journey. On my worst days I feel like an utter victim, helpless and fearful. Yesterday was not one of my best days.

Today is iffy as well.

Once I receive the CEA levels, I will at least know something. That knowledge might be an existential horror, but my imagination, powered by dread and fear, is always harder to live with than the reality. It's not like we don't already know I'll almost certainly die of this in the fairly near future. We're well past negotiating "if". Now we're down to "when". And CEA levels are a harbinger, forecasting the every shortening length of my days with confidence, if not precision.

So, yeah. Victim, not dime store Buddha. I miss the easy, confident and above all unknowing privilege of good health. That is something I shall never see again.

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Kari Sperring
User: la_marquise_de_
Date: 2013-04-23 14:01 (UTC)
Subject: (no subject)
Kari xxx
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User: klwilliams
Date: 2013-04-23 15:43 (UTC)
Subject: (no subject)
I miss the easy, confident and above all unknowing privilege of good health.

I'm so with you on this, and so very sorry you're going through this. I hate having to explain to my friends that I can't power through things anymore. I can't ride my new bike the three miles to a friend's house. I can't do more than one thing in a weekend. I sure hope the new medicine is as good as it's supposed to be.
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asakiyume: highwayman
User: asakiyume
Date: 2013-04-23 17:11 (UTC)
Subject: (no subject)
Do you think being super-duper sick has made you more compassionate (thinking of your dime-store Buddha phase) to your friends' suffering, or were you always pretty compassionate? ... I'm thinking about how being in bad financial circumstances made me a way more generous person (financially, anyway) than I was before going through those hard times.
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Jay Lake
User: jaylake
Date: 2013-04-23 21:09 (UTC)
That question might be better addressed to my friends and family, but I would like to think I've been pretty compassionate for quite a few years now. Not always -- I was rather a dick as a young man -- but at least the past 10-15 years.
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User: saveswhat
Date: 2013-04-24 00:34 (UTC)
Subject: Re:
I don't recall that you were a dick as a young man.
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Jay Lake
User: jaylake
Date: 2013-04-25 01:56 (UTC)
Subject: Re:
Did we know each other when I was young? Chemo brain can't associate your LJ handle with an IRL name. (Not normally an issue for me either way, I'm fine with Internet anonymity, I'm just curious.)
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User: swan_tower
Date: 2013-04-23 17:56 (UTC)
Subject: (no subject)
Uncertainty is a terrible thing. Hugs, and fuck cancer.
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mlerules: Snuggles
User: mlerules
Date: 2013-04-24 06:23 (UTC)
Subject: (no subject)
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