My Liver Cancer Blog

Ok, so the two things that are really saving me are the chemotherapy (or at least I hope so – I won’t know if the tumor is shrinking until they do a scan to check) and the love of my family and friends. But more on those later.

Here are two other things that are saving my quality of life, which also means they are saving me.

First, antidepressants. When I thought I might have cancer, I returned to a therapist I had seen for a few months 5 years before. I was also experiencing work-related stress and was starting to feel like my department was a toxic environment. So I started by searching online for therapists who help you deal with life-shortening illness and other therapists who help you deal with toxic work environments. It’s hard to find someone who specializes in both. So I went back to my previous therapist, and after a few sessions of talking and crying about the work situation, followed by another couple of sessions talking and crying about the fact that I had just learned I had this rare cancer with a pretty terrible prognosis, she gently suggested that I try antidepressants.

I should say that I was thinking about death all the time. I would wake up at night thinking about all the things I should do to “get my affairs in order.” Every night – the same thoughts, the same list of things to do, the same worries, every night. In my better moments I would think that I have had a beautiful, abundantly full, and mostly happy life. I wanted my life to be full of adventure, and it has been. I wanted to travel to many different places, and I have. My career as a scholar is deeply fulfilling and intellectually stimulating and grants me the freedom to undertake the research that I want to do. I’ve had an impact on my field: my first book is still, 20 years after being published, assigned for courses and widely cited. I enjoy teaching undergraduates. I’ve gone on beautiful, just-challenging-enough (for me) hikes. I’ve seen beautiful art in many galleries and museums around the world (in my retirement, if I have one, I’d like to take an art history class or two). I have very close relationships with my husband and family. Thinking about all this has been comforting, and has helped me accept death a little, but I could only hold onto it for a moment before thinking, “I want more of my beautiful life. I want at least 10 years of retirement so I can spend more time with family and friends, and go on more beautiful hikes.” I was sure I was going to die in a year (and I very well might). I was also profoundly angry. (Warning – the mean, ugly thoughts that come next might offend some). I would be on the subway or walking down the sidewalk, and see people who looked like they didn’t take care of themselves — obese, drunk, clearly high on something — and think, “Why do you get to live and I don’t get to live?” If some supernatural entity had tapped me on the shoulder and asked me, “If you want, you can give your cancer to that slob over there — do you want to?,” I would have said yes in a heartbeat. I was also terrified, so terrified that it was preventing me from doing research about my cancer. I just couldn’t. As I said in an earlier post, I was afraid of becoming more afraid.

The moment that clinched the antidepressant decision for me was when I was having lunch with my friend, J. I told her that everyone I spoke with told me that having hope was important for getting through treatment. “Well, you have to have hope, don’t you, you just have to,” she said. And I said, “here’s the thing. I don’t.” And as it came out of my mouth I realized it was true. I was so swamped by grief, fear, and anger, any hope had just suffocated and died.

So, I went to my doctor and asked her to prescribe some, which she was happy to do after I told her how I had been feeling. She reassured me all those feelings were “normal,” and I’m not sure what that statement was meant to accomplish. I don’t think she was trying to discourage me from taking antidepressants. Like, I don’t think she was saying, “This is a normal response to this diagnosis, not an abnormal response that warrants medication.” But maybe she was. Anyway, I told her I knew my feelings were normal, but they were preventing me from enjoying the life I have now, and also making me feel so internally turbulent that it was hard to think, and definitely hard to have hope. I reassured her that I was not having thoughts of self-harm, but I needed to be in a calmer emotional place where my emotions were more linear and less like a crazy sine wave curve. Although that’s not really right. There weren’t a lot of ups in my emotional sine wave. So maybe like a sine wave where there’s a horizontal happiness line running through it and much of the wave is below that bar.

Anyway, with antidepressants, I now have hope. I have hope that maybe, just maybe, the chemo will shrink my tumour and I might become eligible for surgery or histotripsy. I now have the courage to look up information about cholangiocarcinoma, available treatments, and the biomarkers associated with specific targeted therapies. I now have the strength to tell friends I have cancer, to say it out loud or put it in a text, and one very good friend has come to visit me, and a couple more plan to. My sleep isn’t actually much better, but I wake up happier and laugh more. I have more energy to get exercise, even if it is just long walks.

Which brings me to the second thing that is making my quality of life better: Simethicone, “which works by breaking down gas bubbles in the stomach and intestines” (says AI). It’s an over-the-counter product. The brand I buy is called Ovol. My main gastritis symptom has been gas – loads of big burps, especially after eating, but also tons of gas throughout my digestive tract, causing a huge amount of discomfort. The PPI I’m on has helped, but not enough. I have had so much gas that I woke up from the sedation during my colonoscopy groaning in pain. I yelled at the nurse (and I am not a yeller), “I thought you were going to sedate me!” And she replied, “We did. It’s the gas in your colon that is causing this pain.” And then they must have increased the sedation because I fell back asleep. At an appointment with my oncologist I told him that I was worried I had ascites (fluid that collects in your abdomen), and he said that the scans had shown just a tiny amount, so he didn’t think so. He thought it was gas. And he had me lie down, and he tapped areas of my abdomen that were distended (left, right, upper, lower), and he was like, “gas, gas, gas, gas.” The amount of gas was terrible, and was preventing me from getting exercise because I felt like I was carrying around this jostling, lurching sack of gut pain. Running was out of the question. I was only comfortable lying down. Surprisingly, no medical person recommended simethicone, my husband did. Or, rather, he said he thought there must be something to deal with digestive gas, and he went to the drug store and found that something. And it has improved my life immensely. I’m not completely discomfort-free, and I’m careful about what I eat (my system can’t handle beans or other high-fiber foods), but now I go for long walks, and I’m working on building up to running again.