update 7/8

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well, the news isn’t good.

in addition to the PSC, josh has cholangiocarcinoma, also known as bile duct cancer or CCA. we don’t know what stage, what kind of treatment to expect, or anything really. we were just told he definitely has it. the hepatologist here in charlotte referred him to the mayo clinic in jacksonville, florida, so he has an appointment on july 14. we’re driving down on the 13th and i booked the hotel room for a week since we don’t know how long we’ll be there. my mom and josh’s parents are also going. that will be interesting since his mother has a broken leg and is on crutches. we’re taking winston with us too.

the good news is that josh’s spirits are good, he’s not depressed, and he’s determined to fight.

he seems to be getting a tiny bit better each day. yesterday he drove himself to the license tag office to turn in the CRX tag. this morning he drove himself to the orthodontist for a checkup (he’s had invisalign for about a year). of course both of those trips wiped him out, and he had no energy left by the time he got home. he’s lost about 20 pounds total but he is finally starting to eat normal amounts again, so hopefully the weight loss will stop. we still need to go to CMC to pick up the images from the two ERCPs so we can take those with us to mayo. josh will probably want to drive himself to CMC. he wants to push himself to do as much as he possibly can. i don’t blame him but i do worry about him driving when he’s so fatigued.

we’ve told our families and friends, who have all been incredibly supportive. we’ve also found some really excellent online support groups at psc-support and cholangiocarcinoma.org.

obviously we’re anxious about what we’ll find out next week, but we’re also hopeful. all we ask is that you pray. that’s all anyone can do at this point.

i’ll post more next week.

Categories: PSC

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