Posted November 11, 2023.
My liver cancer has returned – but this time it’s taking up residency in my peritoneum, or abdominal lining. (My peritoneum is not the same as my perineum.) I’ve been having quarterly scans and bloodwork at Mayo ever since my liver surgery in October 2022. My scan in September showed an area of concern, which triggered an agonizingly long series of more tests and scans and biopsies. The reality is that everything moved pretty fast, but it always takes a week or ten days to get the next thing scheduled. And here we are, nearly two months later, but we finally have all of the information and a plan for next steps.
My hepatocellular carcinoma has re-emerged as peritoneal carcinoma. Because this is the spread of the liver cancer, it’s technically secondary peritoneal carcinoma, aka peritoneal metastases, aka stage 4. If you search any of these terms, Dr. Google says I have six months to live. Which is weird, as I’m completely symptom free and feel terrific. There’s a liver tumor marker blood test (AFP) I’ve been getting quarterly: Before the liver cancer was removed, it was 131. After surgery removed the cancer, it was 3 in December. Then 9 in March, 12 in June, 33 mid-September. Those numbers were moving in the wrong direction. (83 on October 30, ack.)
Receiving this news was exhausting. Jesus fuck, I JUST did this a year ago. I’m tired of it. And I’m not exactly the kind of person who’s going to fight! or think positive! or start juicing! or, God forbid, Jesus! I spent a good long while in the “I’m fucked” camp: Deal me in, boys, and pass the smokes: I’m hitting gambling, Marlboros, pizza, whiskey and milkshakes until I’m dead, which will be within six months. Four months, actually, as we’ve already lost two months fucking around. This plan will also help me look appropriately ghastly upon my death; I can’t die looking this good.
We talked to my Mayo liver doctor: with new immunotherapy treatments, one out of three patients with this is still alive in four years! That’s the good news? What the fuck. Meanwhile, we were making end-of-life plans for our beloved Abbie. Bob was feeling quite defeated in the “keep family alive” category. My work continues to be an amazing, exciting, exhilarating and critically important roller coaster; I don’t have time to plan my exit. I’ll need months, if not years, to create instructions to leave for Bob. I feel like I definitely can’t abandon him with the hoarding situation in our basement.
I tried to convince myself that I should have departed 20 years ago when my brain aneurysm hemorrhaged, and this has all been bonus time. That didn’t help. I’m not ready to go.
I don’t enjoy the existential terror.
I’ve been assigned to an oncologist at Mayo, Dr. Lionel. We met with him last week and we have a plan! He’s very optimistic about immunotherapy treatment being able to manage my cancer and give a durable, long-lasting result. So I guess we’ll just do that. I’ll get immunotherapy infusions every three weeks; they start on Wednesday. The good news is that I can do those with my local oncologist at Methodist Hospital. I shouldn’t feel any effects from those infusions; they might make me a little tired. After three rounds of infusions, I go back to meet with the Mayo team and get more scans. I am participating in a study at Mayo testing how they do PET scans for my type of cancer specifically (a targeted radioactive fluid), with a goal of getting even clearer pictures of what’s happening. This study won’t change my treatment – but it might help with how we can monitor progress with more detail.
It's weird to adjust to the idea of living with cancer. But I see people doing it all around me. Thanks to diligent monitoring, we caught it super early. Even though I lack enthusiasm for nurturing a good attitude and taking control of my destiny, to complement the world-class Western medicine treatment I’m receiving, I’ve started seeing a Chinese medicine practitioner (an actual Chinese person, not some white girl in the suburbs). I’m in regular consultation with the amazing ethnobotanist at work on the medicinal properties of different plants. I’ve cut out sugar, for the most part, as sugar feeds cancer.
I’m still not juicing.