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Jay Lake
Date: 2010-01-22 06:00
Subject: [cancer] Chemotherapy, the first two weeks
Security: Public
Tags:calendula, cancer, health, personal, shellyrae
calendula_witch and I are off to the infusion center in a couple of hours. I'm up, walked and more or less ready.

Over the past two weeks I have weathered a host of side effects. None of them have been as bad as expected, except the exhaustion, though I still managed to walk every day, and write most days, and squeeze in a trip to Seattle. I did mismanage my spoons yesterday. Was feeling pretty good, so never quite got around to stopping and resting as I should. Compounded this with a food crash heading into the lunch hour. By yesterday evening, I was stupidly tired, and had a small emotional meltdown.

Basically, I've learned to live with chemo. I'm told the first round of side effects typically sets a patient's pattern going forward. It's my expectation that the side effects will get worse as the sessions go on and the drug effects build, but really, I can live with this, and it's less frightening than I'd expected.

We did produce a side effects worksheet last night, with consultative input from shelly_rae. This is so I don't forget to report anything to the oncologist this morning. I'll put it here under a cut for mild medical TMI, for those who are interested in the details.
Side EffectDurationIntensityRemarks

HeadacheDay of infusion, 24 hoursHigh to mildUnusual for me

ConfusionDay of infusion, 3 hoursModerate

Extreme fatigueOngoingHigh to moderateDiminished somewhat over 2 weeks

OversleepingFirst 6-8 daysHigh to moderateFrom 10+ hours down to my usual 6

Bowel distress/severe diarrheaDays 7-9ExtremeIndescribably foul odor, very loose stool, possibly related to pre-existing intermittent lactose intolerance

Bowel distressOngoingModerateSlightly looser and more frequent than normal

NeuropathyNone observedn/a

Cold sensitivityFirst 5 daysVery mildLimited to back teeth

Impaired short term memoryOngoingMildLike I often am, just a bit more

Impaired long term memoryOngoingMildUnusual for me

Impaired thinking skillsNone observedn/aOther

Slowed thinking skillsFirst 5-7 daysMildAll my faculties, just slowed down

Impaired observation/EQOngoingModerate to mildDiminished somewhat over 2 weeks

Loss of appetiteOngoingHigh to moderateDiminished somewhat over 2 weeks

Food 'crashes'OngoingHigh to moderateDiminished somewhat over 2 weeks

Nausea10 minutes, day 3Mild

Sexual dysfunctionOngoingModerateLibido largely intact, erectile dysfunction, difficulty reaching orgasm

Excessive dental plaqueIntermittentModerateCould this be a sign of thrush?

Some of the side effects are distinctly unpleasant, some are socially embarrassing or difficult to discuss (especially the bowel distress issues and sexual function issues), but they are all very real parts of the cancer experience.

We're keeping today's infusion low key, just riding it out and seeing how I do. shelly_rae will be back down tomorrow, with a quiet weekend for all three of us here at Nuevo Rancho Lake. I'll update as I can.

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User: deborahjross
Date: 2010-01-22 16:45 (UTC)
Subject: (no subject)
Keyword:teddy bears
Some chemo patients find the side effects are reduced by "alternative" techniques like acupuncture and nutrition. IIRC, my friend felt she got the most benefit from consulting a naturopath about diet modifications (this was a team approach, coordinated by her oncologist). While some of the suggestions were, imho, way over the woo-woo line, she followed them diligently. I suspect that, even apart from any efficacy, the sense of Doing Something helped.

Oh, and she did find massage helpful in terms of general well being. But then, so do I.
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User: desperance
Date: 2010-01-22 18:19 (UTC)
Subject: (no subject)
In which you are the perfect patient: a worksheet spelling out the side effects, forsooth! I do love geeks...

Also, yes: expect everything to worsen, along the patterns already established. Except for the support, love & concern of your friends, which you may expect to strengthen, along the patterns already established.

Sorted, then. *nods*
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Jay Lake: cancer-biohazard_bag
User: jaylake
Date: 2010-01-22 18:41 (UTC)
Subject: (no subject)
a worksheet spelling out the side effects, forsooth! I do love geeks...

So did the oncology nurse-practitioner who screened me in this morning. Plus I brought a drug inventory, showing prescribed levels and pills remaining.

And yes, patterns both good and ill. Sorted indeed.
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Gary Emenitove
User: garyomaha
Date: 2010-01-22 20:58 (UTC)
Subject: (no subject)
>>By yesterday evening, I was stupidly tired, and had a small emotional meltdown<<

I sincerely hope it wasn't exacerbated by the interaction with the OBP. We in Omaha enjoyed the opportunity to see you, although we often commented (during and after) that "Jay sure didn't move much." Perhaps it was the video scan rate.
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