My Liver Cancer Blog

the whole time I was writing my second book I worried about dying. I worried that somehow death would take me before I could finish. And then, once it was done and published, I stopped worrying. As if death comes only to prevent you from accomplishing the things you want to accomplish, but leaves you alone other than that.

Weirdly, I pretty much gave up drinking about a year ago, maybe more. I wasn’t enjoying it as much, and I felt my body wasn’t processing it as well as it had. But I just attributed that to aging. It didn’t occur to me that there might be something wrong, that my liver might not be functioning as it should. (Is that true? Was there a niggling at the back of my mind that there might be a problem? To be honest, I really can’t remember.)

Weirdly, or really not, coming to accept all this is not a straight line. It’s not like a gradual cognitive or emotional evolution from denial to acceptance. I still have times, like this morning, where I simply cannot believe that this has happened to me, is happening to me, that I’ll probably be sick with this fucking disease for the rest of my life, however long or short that is. I will always be having scans, I will always be having bloodwork, I will always be wondering if the tumor is shrinking, growing, spreading. Even if my “always” turns out to be quite short. I think my disbelief today is triggered by the fact that many of my colleagues will soon be heading to our field’s annual conference, and so various invites for dinners and new book celebrations are going out. I imagine them all out enjoying the city, the time away, the laughter and gossip with academic friends they haven’t seen in a year. And I think about how life goes on without you, and my time right now is spent just trying to survive and get at least a little bit better, hoping that the next bloodwork or scan or whatever it is, is good, shows progress, shows I’m less close to death than I was last week or last month. What wouldn’t I give for things to suddenly be back to normal, that this be a normal sabbatical year, that I be off doing the research I had planned, that the time I spent as Chair of my department be rewarded the way it should be — with a year for reading and fieldwork and thinking and writing. To have completed a job I really, really didn’t like only to be diagnosed with a deadly disease is just so unfair. (Lots of self-pity in this post, which I’ve mostly stayed away from…).

Weirdly, I’ve become a little obsessed with “syd” (Sydney Towles), a young woman on TikTok who also has cholangiocarcinoma, and who posts videos about her experience every day. She’s so young — only 25 — and has been in treatment for 2 years. I think I’ve been shocked by my diagnosis?? Imagine how she felt! And she lives alone in NYC, gets herself to chemo appointments, had to deal with a cockroach infestation.

Weirdly, or really not, I’ve found myself imagining how other people inform their friends about my disease. My niece, for example — does she just announce to her BFFs, “My aunt has cancer”? It feels odd to me to be distanced from that, to not be the one who’s sharing the information, to be the topic of other people’s conversations, the topic of their grief and fear. I know my mother has told a few friends and neighbors. I try to imagine how those conversations go. I feel bad for my mother that she no longer has her sister to talk to (her sister died of gallbladder cancer).

Weirdly, I think I did not realize just how sick I was before I was diagnosed. I had gastritis in the spring, but was also just so tired. I took naps in my office at work, something I’ve never done before. Walking from my office to the subway at the end of the day I would have to stop on a bench and rest. Why I didn’t run to my doctor, I have no idea. I think I just kept focusing on the things I needed to accomplish before I completed my term as Chair at the end of June (I did actually see her long before June, but I should have tried to see her before I did). How idiotic am I. And at the end of June and in early July I lost a lot of weight. I had an earlier post about how chemo changed my butt, but I wonder now if it was actually cancer that changed my butt through pretty dramatic weight loss (fairly early into chemo my weight stabilized, and I gained it all back). I think now that if I hadn’t been diagnosed when I was, and if I hadn’t started chemo immediately after, I’d probably be dead now.