My Liver Cancer Blog

In January, when I had finished combined chemo-immunotherapy and just started immunotherapy (durvalumab) alone, I woke up with a cluster of small, red, itchy bumps below my right elbow. Once or twice before I’ve gotten spider bites while sleeping, and so that was my go-to diagnosis, especially because it was on my arm, which is usually exposed (not under the covers) when I’m asleep. I got a little paranoid about the possibility of other bugs, and so I washed all my sheets and pjs. It wasn’t until a few days later that I remembered that the most common side effect of immunotherapy is itchy rashes. Essentially, immunotherapy is ramping up your immune system so it will kill cancer cells, but this means there’s a greater risk of it attacking healthy cells too, most often leading to minor skin or digestive issues. Why this tends to happen when you are receiving only immunotherapy, and tends not to happen when you are taking it in combination with chemotherapy, I have no idea (the dose is the same). I got an itchy rash again in May, when I was off the durvalumab and on the zenocutuzumab and had just had a CT scan. So I googled: “Can CT contrast dye cause an itchy rash?” “Can durvalumab cause itchy rash months after taking it?” “Can zenocutuzumab cause an itchy rash?” Yes, yes, and yes. Jesus, Mary, and Joseph on a crutch, as a friend of mine says.

Since I was diagnosed, which was about a year ago (yay! Still alive!), I’ve been thinking about how annoyingly attentive you become to your bodily sensations when you have cancer, and how you often don’t know whether an unpleasant sensation is a symptom or a side effect of treatment or nothing significant at all. A lot of people in the cholangiocarcinoma FB groups I belong to talk about experiencing what I would describe as chronic hyper-vigilance about bodily sensations, and the anxiety it can cause. And they also talk about bringing their unpleasant bodily sensations to their oncologists, who sometimes are concerned about them, but just as often think these sensations are “normal with this disease” or “normal with this treatment” and not worth worrying about.

And, being a professor, of course I hunted down an article that kind of speaks to these issues. It’s by a group of Danish anthropologists, and it’s called “Am I Fine?” https://www.medanthrotheory.org/mat/article/view/4705 They point out that, “Bodily sensations have the potential to become symptoms of disease or to be absorbed into ordinariness” and consequently forgotten, and they ask the question, “How do we ascribe meaning to sensations?” In other words, how or why do we (or how do our minds) determine that a sensation is significant and worth registering because it might be “something,” and why do other sensations get summarily dismissed because they are “nothing”?

To answer this, they recruited a bunch of elderly, middle class Danish people to keep track of their negative or ambiguous bodily sensations, record them in journals, and then be interviewed about them. Kind of interesting is that the research participants dutifully recorded their negative bodily sensations in their journals, but by the time they were interviewed, they had no recollection of most of them. These sensations had been “absorbed into ordinariness” and forgotten. And one of the study’s not very surprising conclusions is that bodily sensations cross a kind of threshold of interpretation — that is, they become “something” and remembered, instead of “nothing” and forgotten — when they seem to align with potential symptoms of cancer that the participants had learned about through Denmark’s many cancer awareness campaigns. In other words, what you have learned from health education programs, maybe especially about very scary diseases, can make a big difference in whether your mind interprets a sensation as a possible symptom or not. The authors also note that cultural values, such as keeping up one’s garden, also informed how their research participants interpreted (or forgot about) ambiguous bodily sensations. (E.g. they remembered the sensations of aching muscles when they were associated with morally valued activities like gardening).

I love the phrase “absorbed into ordinariness” partly because I think it is exactly this that becomes more difficult for cancer patients when it comes to unpleasant or ambiguous bodily sensations. Everything feels like it might be something. But what is the something? Is the something a sign of cancer progression? Is the something a side effect of treatment? Is the something worth bringing to your oncologist? Is the something just a really unpleasant bodily sensation, but still “normal for this treatment”? (In fact I think this study would be more interesting if it were done with cancer patients, but I guess I would think that, wouldn’t I).

For example, (warning – TMI coming your way fast), I had some liquid leakage from my nether regions when I was first diagnosed and during the first couple months of treatment. Also, my first CT scan showed very minor ascites (ascites is the abnormal buildup of fluid in the peritoneal cavity, often caused by liver disease or cancer — it can get really bad, with patients needing to be drained weekly of litres of fluid). My brain put these two things into association — the diagnosis of minor ascites and my liquid leakage — especially because they happened at the same time. Also, the liquid leakage lessened as treatment went on, and later CT scans showed no more ascites, so again these two things seemed to go together. Consequently, whenever I bend forward and can feel some liquid leakage, I become sure that the ascites has come back, which would mean the cancer has gotten worse, etc., etc. But I’ve also read that ascites doesn’t cause this kind of liquid leakage unless there are other things terribly wrong, like a fistula (a hole) between the peritoneum and the vagina. Frankly, I can’t really tell where the liquid is leaking from, but I know I don’t have a fistula. And so, very likely, the leakage is just regular, old middle-aged lady “stress urinary incontinence” that can be triggered by bending over. And it probably hasn’t helped that my fatigue last summer and fall had me lying on the couch most of the time, so my pelvic floor muscles were not getting any kind of a workout. Anyway, this “something” is very likely “nothing,” but it is still very difficult for me to just let it be “absorbed into ordinariness” and forgotten.

Worse for me has been the constant gas throughout my digestive system. The PPIs for gastritis have helped a lot, as has taking simethicone. And I think the cancer treatments have helped, though I’m not sure how. I just know that the situation is a lot better than it was a year ago. When I was first diagnosed and my sister asked if the gastritis was connected to the bile duct cancer, the doctor said, “Well, it’s not not connected,” by which he meant that there didn’t seem to be any direct causal, mechanistic relationship (at least not one understood as yet by science), but rather, as he put it, the cancer causes a lot of stress in the body, which can manifest in a range of ways, including gastritis. In any case, I have good days and bad days in terms of digestive gas pain, and it doesn’t seem to depend all that much on what I eat (and, fyi, since January I’ve gradually gone back to eating just about anything). And on the bad days — every single time — I’m positive, absolutely positive, that the cancer is getting worse and spreading to my abdominal cavity. And every single time I have to tell myself, out loud, that it’s just a bad gas day and it means NOTHING. And even though this “something” is actually “nothing,” there is no way that this negative bodily sensation is ever getting “absorbed into ordinariness.” After all, it was gas symptoms that brought me to the doctor in the first place. So they were, in fact, “something” — it’s just that they aren’t clinically relevant to my tumour and don’t actually indicate cancer progression, and so now they are “nothing.” (My oncologist and his residents have repeatedly said “it’s just gas, don’t worry about it.”)

I think part of the cognitive and emotional problem for cancer patients is that sensations that feel like “something” are very often not clinically significant. They are “nothing,” no matter how unpleasant they may feel. Conversely, things that are clinically significant, like metastases to another organ, you can’t feel at all. You can’t feel your tumour shedding cancer cells into your bloodstream so that they can go colonize some other piece of you.

(And, total tangent, this is the language — colonization — that is sometimes used now in scholarly cancer literature. I recently read an article that was questioning, or complexifying, the idea that you can make your chemotherapy more effective by fasting before treatment or by adopting a keto diet. Fasting before treatment is apparently a strategy for exploiting what is called the Warburg Effect, and the idea is that tumours are heavily dependent on glucose to survive, far more than healthy cells, and so if you fast before chemotherapy, you starve the cancer cells of glucose, making them more vulnerable to being killed. Sounds great, right? And there is some evidence that this works. BUT, this article was saying that cancer cell metabolism is more complex than that — and that while the primary tumour may, in fact, shrink more quickly if you fast before treatment, another response that cancer cells can have when you deprive them of glucose is that they release chemicals that create a hospitable environment for cancer elsewhere in the body. In other words, glucose deprivation can actually cause metastases, or at least that’s the theory. https://www.nature.com/articles/s41392-025-02469-4

The way the article described it, it sounded like the cancer was an alien spore-like entity that sent out ecosystem-changing substances to other planets (organs) when you made the primary planet (organ) too inhospitable. It made me think of the show Invasion. In any case, this is a subject for another post that might be about how the discourse of cancer not only uses the language of war, but also the language of alien invasion and colonization. But the post could also be about how much we still have to learn about how cancer cells work).

Anyway, I got a little too excited there about the language of cancer cell metabolism, and so I got away from thinking about sensations, symptoms, and side effects. Mostly I would just like to go back to not being so aware of my body, to the time when this little itch or that little pain was just absorbed into ordinariness and forgotten. Sure, “listen to your body,” but maybe not all the freakin’ time.

I actually want to end this post on a different note by thinking about the sensation of happiness. The other night I woke up at 2am and thought about how happy, how truly full of joy, I’ve been recently. Physically I’m feeling so much better, and I keep having experiences — like talking to the tellers at the bank about cholangiocarcinoma or receiving so much love from friends on FB when I shared my diagnosis — that have made me just so happy. And I lay there awake pondering the fact that a year ago I was awake at 2am every night full of dread, thinking compulsively about death and all the things I had to do to prepare for it, like getting my will done or finding a doctor who would help with a MAID (medical assistance in dying) request. What a strange, unexpected change — that a year on I am waking up full of joy. And the joy feels like a physical sensation, just pure pleasure at being alive and feeling well enough to do and appreciate the things I love. I know that lots of people diagnosed with cholangiocarcinoma never get this reprieve, never get to feel well enough again to experience this kind of joy at being alive. And, while I still (still!) have moments where I can’t believe this has happened to me, I am really grateful that I feel well and really happy right now.