My Liver Cancer Blog

to watch the summer 2028 Olympics? Will I be alive to see what happens with the 2028 US election? Will I be alive to celebrate my niece’s high school graduation? Will I be alive when my stepdaughter buys her first house? Will I be alive to watch the next season of The Diplomat?

I don’t have these thoughts very often. Or rather, I think actually I do, but they slip in and out of my mind like tiny translucent fish, flitting away in seconds until the next time. I don’t dwell. Though now that I’m writing about it, I guess I’m dwelling. How much future is enough future? Even if I am alive for all of those events, there will always be a next personal or global thing I want to be alive for. (Or maybe not. I’m reading Ian McEwan’s new novel, What We Can Know, speculative fiction about a future Britain that is largely under water, and it definitely does not make me long to be alive for what he calls The Derangement and The Inundation). Still, the desire to be present and intertwined in loved ones’ futures is achingly powerful. And, I have to admit, my desire to see what happens next season on The Diplomat is also pretty strong..

My husband came home from his therapy appointment this week and reported that his therapist’s father had been diagnosed with cancer and had a prognosis of 5 – 10 years, and had responded by saying he was aiming for 20. I commented that given the prognosis for my kind of cancer, I would be thrilled with a prognosis of 5 – 10 years. My husband sadly agreed.

It’s hard to avoid the “will I be alive for…?” thoughts when you hear that someone else with cancer probably has at least 5 years of life left, and the online stats tell me I probably have much less than that. On the other hand, pretty much everyone in the FB group for cholangiocarcinoma patients and caregivers advises taking the online stats with a huge grain of salt because (1) the data is outdated and doesn’t take into account the rapidly increasing number of treatments available and (2) the stories of people in this group include patients who have attained NED (no evidence of disease) and stayed that way for 5 – 10 years. Survival times range from months to a decade (so far). But, of course, the nature of people’s tumors also vary enormously — found early, very small, and operable; found late, very large, many metastases, and not operable (though that can change over the course of treatment).

Balancing hope for, and optimism about, longevity with the realism that this cancer is a very bad one is a challenge. Holding both things in mind — I might live for one more year, be prepared for that, live as if this is true; I might live for 5 or more years, be prepared for that, live as if this is true — is not easy, but feels necessary to me. When I find myself inclining a little more one way, I deliberately try to remember the other possible path. When I start thinking a lot about hikes I could do over the next few years (assuming I can regain my strength and stamina), I remind myself that liver failure is a possibility and that at some point I will want to submit a MAID request (Medical Assistance in Dying – https://www.dyingwithdignity.ca/end-of-life-support/get-the-facts-on-maid/ ) so I can decide when I’m going to die, which would be before I become a husk of myself. When I find myself brooding over caregivers’ stories of their loved ones’ metastases and infections, and their own despair about being told there are simply no more treatments for the patient to try, I make myself think about my own liver function indices (which have all recently fallen into the normal range!!!), and I look up typical dishes in Malta because maybe we’ll take a trip there. And I try to remember always that death can come to any of us at any time — the death of my surgical oncologist a month or so ago brings this clearly into mind, as do daily newspaper stories about car accidents, etc.

And, it’s not really a tension between hope and realism; rather, it’s a tension between two (actually many) possible realisms, one of which gives me a lot more hope because it would mean a lot more life. That life might not be 5 or more years of NED. It could very well be 5 years of moving from one treatment to another (from the standard immunotherapy-only protocol, to treatment with Tibsovo, to treatment with zenocutuzumab, to treatment with an HAI pump, to histotripsy, to treatment with Y-90 radiation, and so on and so on), all providing me, I hope, with many moments of hilarity, beauty, joy, love, and gratitude, and, I hope, not too much sorrow, fear, or pain.