Everything starts with a confession

or something suitably melodramatic

I’m dying.

How’s that for melodramatic?

I can push it a little farther if need be.

Intrahepatic cholangiocarcinoma, stage 4, nonresectable. Don’t know what intrahepatic cholangiocarcinoma is? Not a big deal, I didn’t either at first. As other friends who have dealt with their various cancer diagnosis have told me, before long you become an expert at your own particular brand of cancer.

They weren’t wrong.

In short, what I have is bile duct cancer. The tumor is inside my liver (the intrahepatic part). The stage 4 part of it means that the cancer has metastisized. It’s metastisized to both lobes of my liver, my lungs and a lymph node, although those spots are still small. Nonresectable means no chance of surgery to excise the tumor (by taking a huge chunk of my liver that contains the tumor) or even the possibility of a transplant. They are cautiously watching it.

Potayto, potahto. It comes down to the same thing. There’s a very high probability I won’t survive past five years. This cancer is a bit rare (although not the most rare, lucky me? However, it does appear to be unknown to many. Like…how many of you knew what it was?). It’s aggressive and resistant to treatment. If I were special enough, I would have a mutation that could be targeted by emerging technologies for treatment, but nah. Not for me. Just plain ol’ bile duct cancer with no targetable mutations. Getting plain ol’ chemotherapy. Having the plain ol’ side effects.

As you can imagine, those side effects aren’t exactly a walk in the park.

The diagnosis was in February of 2023. As we have just rung in the new year for 2024, I’ve managed to stay alive 11 months. Yay Team Me! I’ve survived past my expiration date of 3 months (the timeframe of survival if I took no treatment). The tumor has shrunk by 40% so far. Another victory.

I’m under no illusions of surviving for long, though. I’ll celebrate if I survive past the 5-year mark, but there are no guarantees. Chemotherapy for me is palliative, not curative. A delaying action of the inevitable.

So why bother even writing this? Why not just lie down and wait for the end if I’m that intent on dying?

Let’s just say that I’m a rebel. No really. I took Gretchen Ruben’s The Four Tendencies test and scored Rebel. LOL It does fit me, though. I’ve never been one to just do what someone says I should do. That guarantees that I’m going to move in the opposite direction. I’ll do what I want, thankyouverymuch and keep your opinions to yourself.

So, I’m not intent on dying but there is no reason to turn my face from the facts. Just because I’m dying doesn’t mean I’ll go quietly. I have stuff to do. The timeline has been shortened, so it’s time to get to it.

This past year has been me trying to find my feet. My writing career (such that it is) was put on hold while I navigated this new terrain of being devastatingly sick. It’s coming up on a year, for which I’m still thankful to be alive, and it’s time for me to shake off the cobwebs and get back to writing.

Creating this substack is an exercise in…something. I haven’t figured that out. Mostly, to chronicle my illness moving into year 2 and finding my way back to what I love to do the most.

So I’ll be writing a lot about cancer, about my experiences with everything surrounding it, dealing with friends and loved ones as they try to come to grips with my diagnosis, all the while trying to write fiction as I’m dying. Maybe other subjects as the mood strikes me. Like the occasional poem. Closet poets represent!

I live to write. I’m living with dying. I’m writing while dying. It’s a bit of a mess, innit? I’m not sure it’ll get less messy. No apologies. That’s life. And death.

You’re welcome along for the ride. I’d like the company.