My Liver Cancer Blog

Things I feel lucky about:

(1) That apart from having a deadly disease, I’m healthy and strong: normal appetite, able to take long walks and I’m gradually building back up to running, reasonable blood pressure, normal blood sugar.

(2) That so far the side effects from chemo have been negligible (knock on wood) – a little fatigue, no nausea. But I’m only on cycle 2.

(3) That my people love me and are here for me. My husband cooks dinner every night. He comes with me to all oncology and chemo appointments. One of my best friends came to visit for a few days. My parents drove up and spent one of my chemo days with me. My sister drove up and came to an appointment with a surgical oncologist with me. I have a great relationship with my step-daughter, and we’ve been texting a lot about my cancer and this blog. As context I will say that I attended an online nutrition workshop for people with cancer, and it was so clear that a lot of people were really on their own. They spoke about utter exhaustion – too tired to plan meals, go shopping, cook, clean up. They made it sound Ike they had to do all these things themselves, no one to help. One woman said she mostly ate toast and butter. I feel profoundly lucky and grateful that I have my people, and they are totally here for me.

Things I worry about:

(1) That the chemo won’t work — that they’ll do a scan in 6 months and find that the tumor hasn’t shrunk. This would be very bad.

(2) That I won’t have any “actionable biomarkers.” This one is a bit hard to explain, but apparently all tumors have their own mutations (also called biomarkers), which drive their growth and which are identifiable through genomic analysis of biopsy tissue. For some of these mutations, specific drugs have been developed that limit tumor growth or even kill cancer cells. “The future of this disease is molecular,” one researcher told me, meaning lots of work is going into identifying additional common mutations and trying to develop more new drugs that specifically target these mutations. When the standard chemo regimen doesn’t work, oncologists try to resort to these “targeted therapies.” I worry that my tumor won’t have a mutation for which there is a specific, effective drug — in other words, that there won’t be any targeted therapies available for me. We already know that my tumor doesn’t have one mutation – FGFR2 – for which there is an effective drug. If I have no actionable mutations, this might also be very bad.

(3) That I will have an “actionable biomarker” for which drugs have been approved in the USA for treatment, but not in Canada. I was born in the USA, but have lived in Canada for more than 20 years. I LOVE the Canadian health care system. But I am learning that when it comes to cholangiocarcinoma, Canada is behind (I mean really behind) the USA in terms of approved treatments.

(4) That as the chemo sessions accumulate, I’ll develop more side effects. I worry about fatigue, nausea, losing my appetite, becoming weaker. I’m doing what I can to follow the 3 golden rules of chemo: drink a ton of water, stay active, and increase protein intake.

I plan to look back at this post from time to time to see if I still have the same things that make me worry and make me feel lucky. I imagine my worries might get more complicated as treatment options open up or are foreclosed. If the things I feel lucky about stay the same, I will be so grateful!