Life as a constant lottery

For a few days in a row, I've been having what some busy freelance work days, you know, the ones that are constant and unyielding, like you're working on 2 things at once then get pulled into a third. Your brain gets overloaded and you spell your own name wrong. Like that.

But, still being pretty new in returning to full-time freelance life, I actually liked it. I was busy, I was writing, I was productive, I was getting paid. It was so easygoing that there were a few moments during the day where I actually believed that everything was okay. That life was back -- approximately -- to where it had been (minus my deceased father and foot-long vertical abdominal scar). I digress...

I felt physically okay, too. I had this thought that I felt so ok, so well and normal and fine, that there was no way possible that I could have something wrong with me. No way that cancer was living, even microscopically, in this body. It felt like the jump in my tumor marker was an anomaly, some IBS stuff that was going on and/or the arthritis in my hip. Just some random inflammation driving up the number.

Then I remembered that one of the biggest losses that came from this disease, was the ability to trust my body anymore. Like ever. Because ovarian cancer is one that often doesn't give you warning signs, when you get diagnosed it comes as most devastating. The way it has felt since that day in March 2019 is that my body has seriously betrayed me. I felt fine when it happened. Yes, even with a 20 cm tumor lying across my belly.

So whenever I feel fine, I do not trust it, and when I do not feel fine, I don't trust that either. How well I feel physically is no longer an indication of anything really. Could be fine or could be dying: this is how it goes from now on.

I'll be honest --- I haven't been outside my house for days, and COVID is only part of it. The other part of it is not wanting to be hit with the reality that I have a recurrence of the cancer so soon after finishing the frontline treatment. I'm not sure how being outside makes it more real, but I guess I feel like it does. Inside, it's somehow easier to pretend).

I feel especially bad about it since after my initial treatment, I'd been fortunate enough to be able to go on this maintenance drug, one that up until recently in the cancer world, had not been used for maintenance. It had been used only in a recurrence situation. I had the drug before I recurred, and it is supposed to be some great drug that keeps the cancer away for a long time and still I am recurring.

I guess it feels like a failure on my part. On my body's part, anyway. And it's a reminder that with this particular disease, anything goes, with any stage you're at, for as long as you have it. Whether you never have a recurrence again or if you have them year after year for many years, no one is surprised. When something is like this, it is so hard to find stable ground.

And another reminder that you, with your physical strength and younger-than-average-for-this-kind-of-cancer age, you with your successful surgery and lack of complications and the good luck to receive a new and promising maintenance drug, are no match for the disease. It is going to do what it is going to do. To live with it is to play metaphorical Russian roulette every day.

Another poem

What is even happening? No poems for ages and then... I guess being in a hugely difficult place in one's life for an extended period of time pushes one's "tragic poet" button. I'm hoping these are not only tragic. But they come out how they come out, I suppose. Apparently my muse is not in the best of moods. 😶

back yard

you are watching lush reds fill in the flowers for spring.

even in the unseasonable cold, they come. they always come.

you are waiting for disease to grow in your body, enough

to be visible by machines. then they can treat you again.

even these deadly somethings have such need

to stay alive, like you, however they can.

today that however happens to be your body.

normally you are not such a formidable host.

you have some work to do, you have tea, a view

of chipmunks out the window. you are grateful,

though maybe not as much as you could be.

right? you could be a little happier to be alive,

couldn't you? everyone could. being alive though

sometimes doesn't feel like enough. say it:

you want the mad guarantee that you will live

ad infinitum. or maybe you just want one life

unfixed by chance and disease. even as your brain

is shutting down the concept, you crave the neverending.

cancer circles call this hope: wanting the children

to stay small, the grass to keep its green, or reds

to keep filling in flowers the color of blood.

Living in the highly unlikely

I got the CT scan the day after my last post. It was clear, clean, no sign of anything. Which seems like really good news, right? Well, it is, but. But that doesn't mean there's no cancer in there, only that it exists at a microscopic level. The CA-125 doesn't work as an indicator of cancer for every person, but if it does (and in my case, it does), then it's pretty accurate. I read somewhere 98% accurate as a means of detecting disease in the body. So now what?

Now we do what's called "watch and wait." We wait until the end of May, take the blood test again and see what the number is. If it's way up from 46, then it's pretty clear that I'll need to start chemo again. If it stays the same, or only goes up a little, then it could mean that the maintenance drug is holding the cancer back, that there's maybe like 5% in my body. But what if the number goes down?, I ask the doctor. She says that is highly unlikely.

For about 10 days after that phone call, I decided I would live in the Highly Unlikely. I would magically think the number down. Then I googled ways to do that naturally (spoiler alert: there aren't any). Seem the only way to get it down is to not have cancer. I'm sure there are supplements that claim they can do it anyway. But that stuff scares me.

After that 10 days, I kind of settled into this funny space where i know intellectually that the cancer is back, but because the scan was clean and the number low-ish, I can live in this in-between space. Like from now until May 27 when I get my next set of labs, anything is possible.

Well, some people will say anything is always possible, but it's hard to keep that smile on your face in the face of something like this. Still. Until I see some astronomical number, I can keep pretending it was all just a little glitch, a bump in the road, a wee detour. The numbers can go up, the numbers can come back down.

Stay tuned for a poem on this subject.