My Liver Cancer Blog

I’ve joined a couple of online support groups specifically for people with cholangiocarcinoma and their caregivers. I haven’t posted anything yet – I still feel like a newcomer in a foreign land who is gradually learning the local language. I tend to be a shy and self-conscious language-learner, reluctant to speak (or post) unless I’m sure I’ve got the vocabulary and grammar correct.

Cis/gem/durva, Y90, stents, pemigatinib, futibatinib, histotripsy, Folfox, CA19-9, FGFR2, IDH1, KRAS, HAI pump, ascites, ablation… I was unnerved by the fluent online conversations using these words and many equally obscure others. I had no idea what my fellow-sufferers were communicating to each other. I could parse that some of these words were things people “have” (e.g. “I have FGFR2,” to which others might express hope or congratulations), and some were things that people “take” or “are on” (e.g. “I’m on Folfox, and I’m experiencing XYZ side effects.”), and some are things in the body that can be measured (e.g. CA19-9). But other than that I was lost. Now, a month or so later I know what most of those words mean, if only in a superficial way. To gain more fluency would require experiencing more of these terms, about which I’m ambivalent. The time will come, I am sure, when greater fluency is pressed upon me by my body and my desire for it to keep living, but until then I am willing to sit silently, learning from those who have had fluency forced upon them.

And cancer is a country — a foreign, incomprehensible country — because of the range of unpredictable stories, life spans, and deaths its inhabitants have had. One person had a large, intrahepatic tumor, all tangled up with various important veins, making it inoperable, but he did astonishingly well on the standard cis/gem/durva (short for cisplatin, gemcitabine, and durvalumab) chemo and immunotherapy regime. His tumor shrank enough to become resectable (removed surgically), and he has been NED (no evidence of disease) for 2 years. He received hundreds of likes and congratulations, and there was a sense of awe about his post — you could almost hear through the ether the collective intake of breath, a moment of silence to acknowledge the miracle that had taken place. And then a kind of collective desperation emerged – what diet was he on, did he take supplements? In other words, what special magic had he discovered, and would he share his secret? I too want his story to be mine. My hopeful suspicion is that there are more patients out there like him, but they may be reluctant to share their stories, knowing that so many others will not have their experience. Maybe it’s a kind of survivors’ guilt – “why was I spared when so many others are not?” And maybe it might feel like bad luck to share, knowing that recurrence can happen, often happens, and having left this country, they can easily be thrust back into it again.

Other stories were posted by caregivers about husbands or daughters in their 40’s who had no symptoms until their skin turned yellow, and then they died within a year, leaving behind spouses, children, mortgages, immense lawn-care maintenance work, and bills.. Most citizens of this country live in between the spaces of NED and quick death — the cis/gem/durva works well, but not well enough for a tumor to become surgically removable (which is what everyone is hoping for), and so they go from one treatment to the next to the next to the next, often searching for clinical trials to join that might give them access to a new drug or procedure that will keep the tumor in check, maybe not shrinking it very much, but at least preventing it from growing. Many have managed to keep themselves alive doing this for 4 or 5 years. Why some people achieve NED within a year or 2, and others never, is the fundamental mystery in this country.

And cancer is a country of hope and rage. Members have user names like “FU Cancer,” and they regularly describe cholangiocarcinoma as an evil and cruel disease because of its poor prognosis, its unpredictability, and its likelihood of recurrence. Everyone in this country wishes they could leave.