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[cancer] Field notes from Cancerland, high altitude edition - Lakeshore
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Jay Lake
Date: 2013-05-25 06:30
Subject: [cancer] Field notes from Cancerland, high altitude edition
Security: Public
Tags:cancer, events, friends, health, jaywake, personal
Next Treatment Steps

Monday I start Regorafenib. I am frankly rather afraid of this drug. It can have dreadful side effects. And at best, we have a 50/50 chance of seeing useful results. To that end, I have pushed for a baseline CT scan which I will be undergoing on Tuesday. This is out of sequence, as the normal minimum spacing between CT scans is 2 months, while my previous scan was three weeks ago. However, I felt it was important to have an accurate measurement of tumor size and distribution at the start of the Regorafenib series, to compare two months down the road. The hoped-for positive result is a halt in tumor growth. Also, this 3-week scan will give us a decent notion of how fast the tumors are growing.

Current side effects

I've been having a lot of problems with my feet this week. This has led to me being minimally mobile. Not good for exercise. On the other hand, simply existing at my current altitude is practically aerobic exercise. That in turn confuses the issue, as I sleep poorly up here anyway, so I cannot tell if I'm having sleep problems. Likewise, my skin continues troublesome, though it is slowly recovering. We discontinued the Vectibix five weeks ago, which removed the primary driver of my skin issues. And fatigue, lots of fatigue, but difficult again to disentangle that from altitude sickness.


Planning for the JayWake continues. July 27th, 2013, in Portland. The link above has time and venue details, and hotel information. A rather substantial group of people have been making some rather substantial contributions to make this happen. I will be making public thanks in due time, and in accordance with the wishes of various donors. This is an open event, so if you can be in the Pacific Northwest that weekend, please do so.


Both in the matter of the JayWake and otherwise, generosity continues to flow. To the point of overwhelming me sometime. Thank you all for being part of this journey I'm on. I feel slower and more tired every day, it seems, but I am sustained by your love.

The Unbearable Lightness of Satori

Speaking of overwhelming, yesterday on my social media footprint, I said, "Almost any book can make me cry now. The closer I grow to death, the more emotionally fragile I become." It's true. Even light, funny books bring tears to my eyes when I reach the point of closure. It's a very strange mental space to be in. I don't reject the reaction. It's genuine, it's coming from inside me. Rather, this is a different way for me to consume narrative. Another part of the journey.

Every step is a revelation.

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User: martianmooncrab
Date: 2013-05-25 19:43 (UTC)
Subject: (no subject)

now I have a whole different version of Paul Simon's Graceland going through my earworm.


Maybe water aerobics? I found in the past that really was the only way to go. Not sure if the chemicals in a public pool would be acceptable though, but then, maybe in a hot tub...
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User: cathshaffer
Date: 2013-05-25 23:07 (UTC)
Subject: (no subject)
From my reading of the label, it seems like regorafenib is probably less bad than Vectibix. No guarantees, of course, since individuals have different responses, but I do hope the drug treats you well.
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User: a_cubed
Date: 2013-05-25 23:51 (UTC)
Subject: (no subject)
I've always had difficulties with the ending of things I really like, whether they're a happy or sad piece in and of themselves. Knowing it's over is just sad.
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