Wednesday I met with my oncologist. I thought we were going to discuss treatment options, but the extra testing on the liver biopsy sample was still in progress. This was just the appointment to let me know that my cancer is back. Surprise! I’d only known about it for 12 days already. I can’t imagine someone just sitting back and waiting that long to find out their biopsy result. Sheesh!
But with my second opinion appointment coming up soon, I pressed for a first opinion anyway.
I asked about resection or ablation of the liver tumors. “Tumors in the liver are usually spread through the hematogenous route. I would recommend systemic therapy.”
“Can’t we get rid of these liver tumors and then do the systemic therapy?”
“We’ve seen that new tumors often appear afterwards. Systemic therapy will target what we can’t see also.”
There was a bit more back-and-forth in the conversation. In summary, she wants to target the source first. It is likely in my lymph nodes. (I think she is 100% sure about that, but she gives vague answers sometimes. Possibly a side effect of too many medical lawsuits in the world. I hate it.) Anyhow, if the tests don’t show any better targets, her recommendation would be Keytruda + Lenvima. The side effects I’ve heard about that combo scare the shit out of me. I need to do some more research.
Now that it was official, though, I figured it was time to break the news to some of my friends at work.
I got two responses of “Let me know if I can do anything” and one response of “Well, it’s good that you’re still smiling.”
I gritted my teeth a bit at that last one, but I was still smiling. I’ve gotten in the habit of smiling most of the time at work even if I’m not happy. Does this make me insincere or inauthentic? Or is it a necessary pose for someone participating in a society?
I did confess that my husband was taking it worse than me and I didn’t know how to help him feel better. Immediately:
“You don’t have to worry about him. You just need to focus on yourself.”
“Don’t take on that responsibility.”
So at that point everyone was disapproving of my concerns. Apparently, I shouldn’t be thinking of my husband’s well-being. I shouldn’t worry that my primary caregiver may get overwhelmed and not be able to provide the support I needed. Again I gritted my teeth. I was mostly successful in holding back the tears. Sure. Still smiling.
The next day I reviewed my oncologist’s notes in the patient portal: “Medical Decision Making: High risk, highly complex based on cancer diagnosis that is life-threatening without appropriate treatment and need for ongoing treatment monitoring with high risk of complications.”
This is the first time I’ve heard the term “life-threatening” for my cancer. (Yes, I pretty much knew it, but that’s different than hearing my doctor say it.) Does this mean I have a prognosis now? I didn’t ask this time because I didn’t expect to get an answer. But if so, why wasn’t this mentioned during the appointment? I try to have questions ready to ask, but I keep missing out on important questions anyway. And if I don’t ask, no one will tell me.
So yes, I’m frustrated. I’m scared. I’m confused. I’ve cried a couple of times briefly. I proposed to my husband that we set aside time to watch sad movies on a regular basis so that I can let more of these feelings out. (I’ve secretly coined the term Friday Cry Day for this event.) However, he was not at all interested. Instead I just shed a tear at random moments when I’m feeling particularly overwhelmed. As for the rest of the time, I’m still smiling. What else can I do?
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