Well, there was an 80% chance this would happen at some point, but I sure didn't think it would be only 8 months after finishing my frontline treatment. Last month my CA125 went up from 16 (where it's been since last August) to 24.
My doc was not alarmed as many things can account for an increase in that number, any kind of inflammation in the body. My appetite was still good, and I still felt really well. I had some cramping but I figured that that was due to the many digestive issues the maintenance drug presents. And then yesterday, I had another test, and the number was up to 46.
It's still not insanely higher than the normal 31, but it is almost triple my baseline of 16, so.... so it's probably a recurrence of the cancer. I'll talk with my doc later today and get the lowdown. I think normally (i.e. the world sans pandemic), I'd probably go right into the hospital for a CT scan, but I don't know if it'll be that soon now. Many doctors wait until the number passes 100, because before then, the cancer is happening at a microscopic level and supposedly wouldn't show up on a scan until the tumor progresses. So yeah, basically you sit around waiting for the tumor to grow. Awesome.
Many women say news of a recurrence is more devastating than the initial diagnosis. Up until the point that you have a recurrence (and a lucky 20% of women with advanced disease will not), there is always the possibility that your experience was a "one and done." So in that way, yes, I'm pretty gutted by this number. It feels like I got a break from the cancer just long enough to watch my dad get diagnosed, be sick, and die --- and then here it is again. If it ever really went away.
That thing about dandelion seeds -- when you first get diagnosed (or when I did), the surgeon described the disease acting like dandelion seeds, sprinkling itself all over the body. So even if you manage to kill the tumor and all other visible cancer with chemo and surgery, there are still these tiny dandelion seeds hiding, waiting to grow back. You know I used to love dandelions. But fuck that. Fuck them now. They can never be beautiful to me again.
So okay, I'd be lying if I said I wasn't holding out the tiniest bit of hope that the rising CA125 is due to some kind of abdominal inflammation, gall bladder thing, bowel thing, intestinal thing, kidney thing, SOME. THING. Anything but the recurrence. I suppose it's human nature to hold on to the tiniest shred of hope.
I don't know the path ahead (none of us do, obviously). I'm hoping the doctor will say, let's try adding something to the maintenance drug (PARP inhibitors combined with immunotherapies are having a moment right now) or let's try another maintenance drug. But if I do get a scan sooner rather than later, and it does show what I think it will show, I'm likely headed back to Chemo Land. Which now feels like a place I'll be spending time in for the rest of my life.
As my therapist used to say, feelings are just that -- feelings. Is a permanent residence card in Chemo Land possible? Yes. It is probable? Well, here's where I should out with a resounding NO. But um, I can't. I don't know. And I'm no better with unknowns than I was when all this began last year, despite my solid efforts.
Dandelions, fuck.
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