Five years ago, this week was one of waiting.
There was no reason that a routine CT scan should take 4 or 5 days to get the results back, but they didn't come back and didn't come back.
Waiting is so hard! I remember being very angry and the more I found out about PSC, the angrier I got.
My marriage had not been great and I was looking into a future of great unknowns.
My husband had never really shared household responsibilities (not just housework, I mean taking care of cars, the budget, school stuff - many times I felt like I was a single person who happened to have a husband). Now, I was taking care of even more.
Bluntly, the only thing that had ever worked really well (consistently) was the bedroom area. And now, that was not working. (I found out later that when the liver gets involved in pathology, that type of disfunction is very common.)
On one hand, I remember feeling more like a wife than I ever had before. Art had never let me share in helping him. Oh, of course I could do all of the stuff that needed to be taken care of around the house, but Art would not let me close enough to help Art. Now, he had to and that was very fulfilling for me.
On the other hand, I remember feeling selfish, telling the psychologist (I was seeing him just to get things sorted out in my brain) that one of the worst parts was knowing that Art could live for another 10-15 years and never be any better than he was at that moment. I remember telling him that I didn't want to be a nursemaid/maid/housekeeper/accountant/everything else in a sexless marriage - but "in sickness and in health" was an essential part of my marriage vow. If this was the marriage that was in store for me, I was trapped.
There is no treatment that "cures" PSC. The only real treatment is a liver transplant and Art's cancer would rule out putting him on the transplant list. The way around that is to have a family member donate a part of their liver and I (even as a wife and not a blood relative) was a very hopeful match. The CT scan would (hopefully) tell us how much of the liver was involved and how much time we might reasonably expect before a transplant was needed.
So we were stuck in "waiting mode".