My Liver Cancer Blog

I feel like I am doing at least two ways. The first way is that I feel quite well. My last round of chemotherapy was December 22, and it feels good to be off it. I’m sleeping better and I have more energy. Now that I am off chemotherapy I realize I wasn’t aware of how tired it made me. I was just happy it didn’t cause me pain, nausea, vomiting, or complete exhaustion. And now, after getting only 30 minutes of exercise in December according to Strava (flu, recovering from flu, holidays, fatigue), in January I got on my treadmill and started doing short walks a few times a week. And last week I felt well enough to do a walk/run interval program for about 25 minutes. And I’m gradually making it through more of my online fitness class — from being able to do only 20 minutes of it in January to doing the full hour recently. Strava says I am doing great this month (see below). I feel well enough that I have been dancing around my kitchen to Raye’s “Where is My Husband?” (https://youtu.be/rK5TyISxZ_M?si=G2bbMZ-9pfdxtt6k). I feel well enough that I’ve been watching the Olympics and thinking, “Wow, Livigno looks like it would be a beautiful place to go hiking in summer. I wonder if I can find a trail map?” So, on the one hand, I feel better than I have in months.

On the other, I have a constant dull ache under my right rib cage, and I worry that this means the tumor is growing (though it could also just be ongoing gallbladder issues – “sludge” they sometimes call it). My next CT scan isn’t scheduled until March 12 — that was the earliest appointment the imaging department could give me when my oncologist tried to book it for late Jan./early Feb. And I probably won’t receive the report about the scan for another week after that. So, the truth of the matter is that I don’t know how I’m doing — at least in terms of what is actually happening inside me. My last scan was after cycle 6 of the chemotherapy, in November 2025. I should have had a scan after cycle 8 (the final cycle of the combined chemo-immunotherapy), but it turns out that one of the CT scan machines at the cancer hospital is broken, and so nobody is getting scans when they should, and so we don’t know what the tumor has been doing. Did it shrink even more after cycles 7 and 8? Who knows? Now that I am on immunotherapy only, is the tumor stable, growing, shrinking? Who knows?

Is this situation making me absolutely crazy? Yes, when I allow myself to think about it too much. On the one hand I feel well; on the other, every little pain makes me worry I’m about to die because I have no idea how big the tumor is right now. We go to the opera or to a standup comedy show (yes, I am carpe-ing the diem a lot with the ethos that if this is my last year of life — or the last 2 years or 3 — I want it/them to be excellent), and I will briefly imagine myself suddenly collapsing or vomiting masses of bile. “Briefly” because I am learning to discipline my catastrophizing thoughts. I have them. And then I stop them.

Should we take the problem to the press? (Not the problem of my catastrophizing thoughts — the problem of the impossibility of getting a CT scan in a timely fashion). Maybe. Disease monitoring (in this case, visual scans) really needs to be in sync with the treatment plan. Otherwise, it is impossible to know if the treatment is working or not, and it is impossible for both doctor and patient to make informed decisions about treatment. And I’m thinking this problem must be affecting hundreds of patients at the cancer hospital.

Also, fyi, it turns out it is impossible to schedule a private, out-of-pocket CT scan in Ontario. There are one or two places that offer them, but it is legal only under specific circumstances, such as you need to provide evidence for a workplace injury case. And it appears they don’t bend these rules even when demand hugely outpaces ability to supply. So, it’s either wait until March 12 or go to the USA to get one. Ridiculous. (I’m thinking about a future post in which I discuss how Canada actually does have a 2 tier healthcare system, or a combined public/private system, with the private tier informally outsourced to the USA for those who can afford to pay out of pocket… Though I don’t really have enough evidence to make a strong case, I guess. What I do know is that my therapist’s husband eventually got care for his cancer in the USA because he became too frustrated with the lack of options in Canada. And I know that in border cities in the US there are CT scanning businesses set up specifically to meet Canadian demand).

So, that’s how I am doing. Feeling better, able to do more physically, but worried I’m actually getting worse. And also thinking about the weirdness that how you feel doesn’t necessarily reflect how you actually are. At least up until a certain point. After all, before I was diagnosed, this tumor was presumably growing inside me as I went about my life of work, fitness classes, hiking trips, etc. I was fine and feeling great. Until I wasn’t. Possibly I am saying something interesting (though certainly not original) about the relationship between the phenomenological body and the biomedical body. Like – they do a little dance, sometimes at a distance from each other (you feel fine, but from a medical perspective you actually aren’t, but there’s no way to know that without medical tests), and sometimes intertwined (you feel great and from a medical perspective you are. Or, you feel like crap, and from a medical perspective, you are sick). I will have to wait and see what my friend J thinks.

For now I am hoping hard and just trying to accept that how I feel IS how I am doing, and the March scan will let me know if I was right or wrong about that.