Untitled poem

One of my old professors said, if you don't know a poem's title, it's not a poem yet. Maybe she was right. But today is my dad's birthday, the first without him. And my cancer is back. And that's a lot to carry. This the only way I can write about it today, tho.

today is your father's first birthday 

on a different planet or in a different form. 

you wonder will he visit.

today your cancer has returned exactly 

the same as before. no one can tell 

where yet or if this will be its last call.

you are writing in the second person

to hold these things at a distance, obviously.

this is what writing school taught you.  

obviously you miss your father even if

it is less than you thought. selfish girl, 

missing your own life the most. 

the one where you woke up each day

without first measuring the poison.

no one gets through life without 

side effects anyway. especially now. 

at one end of Orkney, sheep grace

the sea banks, grazing seaweed 

instead of grass. you don't know why 

you mention this now except to say, 

i lived another way once. 

i marvelled at them from the road.

now the dandelion seeds of cancer

are waiting in far reaches of your body.

they mean to bloom instead of sleep. 

you are looking in the meantime for marvels. 

looking for signs of your father in the birds 

on the grass. finding mostly twigs there, 

seeds, an occasional reaching bud, 

because it is April after all. 

Why I hate dandelions

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.

Grooves and groundlessness

Hello, hello. Why has it taken me so long to write a new post? you know why: the world changed. And i don't think that's an understatement. We are all forever changed by this virus.

At first, I felt like -- ok, you know what? I've been here before. just last year, in fact -- my whole world changed. There was an illness, it was terrifying, it was seemingly out of my control and I just had to live with the fact of it and do my best and hope that it wouldn't kill me. I thought, ok, I have a little experience with this, a small upper hand.

But I was wrong. It's not just my whole world changing; it's the whole world. We are all experiencing this fear and illness and death and loss together, across oceans and continents. Every single person is affected in some way by what's happening. The world is shifting.

Meanwhile, I recently started a new freelance writing job, which at first was fantastic. I liked what I was writing about, I liked the people I was writing for, and I enjoyed the act of working again, of contributing something, of feeling "normal" or "normal"-ish again: taffythief is back to work!

The one thing I didn't count on, though, was my lack of confidence. I mean, as a human I am fairly self-effacing in virtually every aspect of my life, except when it comes to writing. At that, I will tell you, I am good. Really good. Talented, even. And i won't be joking. But. But I haven't done it in well over a year, so it's not coming to me easily, and I'm not as quick or as sharp in what I'm doing.

I suppose it doesn't help that every so often while I'm in the middle of working at it, I will get some reminder of last year. For example a number on one of my routine monthly blood tests has risen, and this might mean something -- a recurrence of the cancer --or it could mean nothing. In any case, I am reminded that it is a fact of my life I have to keep watch on.

Or like today, I got a phone call from a number that seemed to be a hospital, but it turned out to be spam. Nonetheless, the fact of the call had me racing back to my online patient portal, re-reading lab results and scans and x-rays and doctor notes, just to reassure myself that I'm really ok, that the phone call wasn't some doctor calling me up to say, listen, we read your previous results wrong. Actually, you are dying (hello, PTSD, my old friend.)

And with that, the spell of being normal is broken again. The facts that I had cancer and could easily have it again will not go invisible no matter how much I'd like to pretend. At the moment, it's mostly in the past, but there is this feeling that I need to be hyper-vigilant, lest the proverbial rug be pulled out from under me again.

So I sent in my first assignment at for my freelance job and guess what? It was not genius, not even close. It has a long way to go, and this not a long project. It turns out that crying in the middle of the day isn't all that helpful in getting a person into her "groove." Will I get my groove back? I honestly don't know.

Will the world? I hope so.