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Jay Lake
Date: 2010-07-16 05:26
Subject: [cancer] Testing, testing, 1, 2, 3, 40%
Security: Public
Tags:calendula, cancer, heath, personal
Today is my first post-chemo CT scan, though I won't have the results til Monday's oncology consult. We are looking for additional metastases that may have survived chemo. This will be a quarterly event in my life for next year or two. If things go well in that time frame, we'll drop the frequency, but I don't think it will ever be less than yearly.

What my oncologist said was that in the first year, I have a 40% chance of recurrent metastasis. By the third year, if I stay clean in the mean time and don't re-set the odds, it drops to 10%. By the fifth year, it drops down in the 2% range, which is where the odds stay.

As another doctor, and cancer survivor with a similar cancer history to mine, once said to me and calendula_witch, oncology is "voodoo medicine". Yes, that's not very culturally sensitive, but he made his point, specifically that it's all about statistics and probabilities and hope, because the cause-and-effect relationships aren't nearly as direct as they are in trauma medicine, or infectious disease. You set a bone properly, generally it heals. You use antibiotics and proper hygiene, generally the infection goes away. You put someone on chemo and hope for the best.

I don't mean to say this is bleak. I like and trust my oncologist, and I am firmly convinced my standard of care is very high. But cancer is so idiosyncratic. It can be chemo-resistant. It can come back when it's not expected to. I metastasized from what had been determined to be a Stage I tumor with early intervention. That's not supposed to happen. This is like playing whack-a-mole for life-and-death stakes.

And today we go looking in the mole holes.

First we head for the infusion center to have my port needle set. They'll do the bloodwork there, then send me down to the imaging center with needle in place. The CT techs will work through my chest port rather than through my arms, which given my vein scarring and general circulatory weirdness, is a Very Good Thing.

I know from experience that what stresses me out and ignites my fear responses is the test process, not the resulting consult. Logically, this is backwards. A CT scan is just a big, noisy machine and some contrast dye with weird physical side effects. (Me, I feel hot at the injection site and in my nose and lips, suddenly have to poop real bad, and get moderately sexually stimulated by it. None of these side effects are uncommon, though the techs never like to talk about the sexy bits.) The news, good or bad, comes in the followup consult. In my case, next Monday.

And that 40% looms over me like the Lightsabre of Damocles.

I know that even if it comes back, now is not the likely time, just stepping down from chemo. I know the odds are in my favor, even if at a ratio I wouldn't bet a dollar on. I know my attitude is a big part of this over the long haul. I'm still scared spitless.

Also I'm not doing anyone any favors this week, behaviorally. Instead of melting down over the test, I've been emotional in other ways, as calendula_witch can ruefully attest. The psychic toothpaste is coming out of the wrong end of the tube. And the Jay will be going into the right end of the tube in a few hours.

So, fear and loathing in Portland, Oregon today. I'll be brave at the clinic. I have some dignity. But I'll be surprised if I don't have a total meltdown somewhere in the course of the day as well. Then Monday, the results. Which may or may not lead to further meltdowns.

Just call me Mr. 40%.

In other news, I saw an ophthalmologist yesterday about the intermittent eyeball swelling during chemo. There is no evidence of glaucoma or any other eye disease, my corrected vision is still 20/15, which after about four years is the longest time in my life I've had a stable vision prescription. She said the unusual vein structure in my eyes (see above re my circulatory system, in effect I have varicose veins in my sclerae) means that when my my body is under certain kinds of medical stress, my eyes simply have too much blood in them for a while. In other words, don't sweat it.

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User: lotusice
Date: 2010-07-16 12:50 (UTC)
Subject: (no subject)
Two and a half years later, I still fall completely apart on scan days. I've learned to just cut myself some slack and ride it out.

It's scary-ass stuff. You're allowed. Here's hoping for great results on Monday.
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Jay Lake
User: jaylake
Date: 2010-07-16 13:04 (UTC)
Subject: (no subject)
Yeah, you nailed it.

The Fear.

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User: lotusice
Date: 2010-07-16 13:52 (UTC)
Subject: (no subject)
*hug hug hug*
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Be wise. Be brave. Be tricky.: medical
User: slithytove
Date: 2010-07-16 14:04 (UTC)
Subject: (no subject)
Jay, good luck. It's a long road. It's been steeply uphill for a while. I hope it flattens out for you in the near future.
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User: joycemocha
Date: 2010-07-16 14:21 (UTC)
Subject: (no subject)
Good luck! It's understandable to fall apart on these days. Here's hoping for an uneventful scan and consult.
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scarlettina: Hug
User: scarlettina
Date: 2010-07-16 15:22 (UTC)
Subject: (no subject)
Can I call you Jay instead of Mr. 40%? You are not your cancer, and I will not refer to you in that way.

As for today: ::hug::
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User: e_bourne
Date: 2010-07-16 15:38 (UTC)
Subject: (no subject)
Good luck today!
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User: keikaimalu
Date: 2010-07-16 15:39 (UTC)
Subject: (no subject)
Thinking about you. Sending both happy-results thoughts and emotional-calm-and-sanctuary thoughts.

FWIW, after my piddly-ass Stage 0 cancer and treatment, I still freak right the fuck out on test days, and even more at results meetings, and I'm now 2 years out.

Once you've popped that cancer cherry, there's no going back. But there is adaptation. I find some things get better, and others get worse. Our emotional selves are complex beasts.
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shelly_rae: Jay & Me
User: shelly_rae
Date: 2010-07-16 15:57 (UTC)
Subject: (no subject)
Keyword:Jay & Me
Of course that's also 60% but you know that. Unfortunately the scans don't get easier we just get used to dealing with our fear.
Thinking of you today. As always, I'm available should you need or want.
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Kari Sperring
User: la_marquise_de_
Date: 2010-07-16 16:06 (UTC)
Subject: (no subject)
I'm glad the eyes are okay.
And I'm thinking of you. All the very best.
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User: markbourne
Date: 2010-07-16 16:13 (UTC)
Subject: (no subject)
I'm with Janna -- you are Jay. Nothing more and certainly nothing less. You are not The Prisoner, you are not a number.

Best to you today. You'll defeat the Fear and plant your flag in its shriveling chest. This I know are surely as anything.
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User: barbarienne
Date: 2010-07-16 16:46 (UTC)
Subject: (no subject)
Hang tough, man. You know the rest of us don't think the less of you for being scared. Shit, I'd be worried if you weren't scared--it would mean you were deep in denial.
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User: martianmooncrab
Date: 2010-07-16 17:24 (UTC)
Subject: (no subject)
oncology is "voodoo medicine

after awhile of dealing with Medical Professionals, I want my doctors to be dancing around me shaking feathers, rattles and gourds, just to prove to me they really are working at this.
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User: lotusice
Date: 2010-07-16 19:42 (UTC)
Subject: (no subject)

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