I had a mission. I was going to write my next blog post mid-December. I planned to tackle world building, the topic of several panels I’ve been on lately at writers conferences and I have some points to make. But … things happen. And sometimes they derail us, hard.

First, I want to note, there were plenty of great things that happened in my world in 2025. My son graduated with his PhD, started a great job that’s only 5 hours away, and has a long-term relationship that makes him happy. That alone is a win.  And (counting the last year mid-December pub date for Black River) I had four novels come out this year. That’s pretty freaking awesome. Unfortunately, due to frequent derailing, nowhere near the kind of marketing that I needed to do to get the attention they deserve. They’re there. But very few reviews, very few sales. A lot of that’s on me. But a lot of it is kind of beyond my control.

The C Word

Apologies, but my opinion of every infusion. Photo, Meg Turville-Heitz one of many.

I haven’t shied from talking about my cancer journey. I’m even in an upcoming anthology for survivors of cancer (Link to Adversity and Audacity eBook; link for trade paperback coming soon.). Those who get my newsletters know it hasn’t been easy and those who’ve read my “certainty” series know I’ve railed about funding cuts to the kinds of research that could bring a cure one day, or at least more hope for those of us who have aggressive cancers that don’t respond to treatment.

But not without funding.

So, after two “standard” (unpleasant) treatments (Docetaxel and Doxirubicin, both served in a fine hazardous chemical bag, with a Carboplatin chaser (yum)) failed to manage the disease and I came out of remission, we tried a newer drug, brand name Elahere, a monoclonal antibody treatment—$100K a pop—that goes after a particular marker on my cancer cells. And another six months, with only neuropathy for a side effect and some serious decline in vision, gave me a break.

Until it didn’t.

When the cancer returned, the standard go-to is Paclitaxel (Taxol), which we started on day 1 of treatment lo almost three years ago, and immediately took me off it due to side effects. I was miserable. It was miserable. To avoid that high toxicity, I would need a weekly infusion. These aren’t quick little 15-minute things. This is a 45-minute drive to the clinic, wait an hour after a blood draw for results, meet with physician to determine if healthy enough for treatment, then strap in for about two-three hours of infusion. Every. Single. Week.

Be the Guinea pig

That’s when I asked about clinical studies. Dec 2., I became a Guinea pig. And it hasn’t been pleasant, let’s just say that up front. But I was game. For SCIENCE!

This is a Phase 2 clinical study for a not-yet-approved drug I call “Lori” because its real name is a tongue twister. We know it has some marginal success treating prostate cancer. Researchers want to know if it will work for ovarian cancer (because we develop the meds for the men, first, right?). It’s an immunotherapy, a “bispecific lgG4 dual-affinity re-targeting antibody (DART)” that blocks two proteins that more or less contain T-cells in order to ramp them up to go to war with cancer cells.

The treatment schedule in the clinical research unit. This was an 11 hour day, starting at 7 am at one location for labs to be drawn and physician okay, then to the hospital for treatment, which was delayed about 2 hours. Two IVs, one in each arm. More than 22 vials of blood drawn. Released after 6 pm.

I had to go through a battery of tests to be sure I was healthy enough and there were moments I almost thought I’d be booted (due to the neuropathy). In the end, I’m in! One of 60 at several institutions. No weekly poisoning to weaken my veins. Instead, infusions every three weeks. I can deal with that! No major side effects! Wait, scratch that. This study assesses the efficacy and SAFETY of the drug. Like, will I survive? Wait … what?

TMI

The problem: when you remove those inhibitions, the T-cells get a little kill-happy; they’ll go after healthy tissues just because they look at the T-cells funny, or were just casually hanging out somewhere like your liver or something. Without regulation, it’s a big bully. Lucky me, I was the unicorn who was the first in the study with a GI reaction. Good news, no one else has pegged an 8 on the pain scale! Those bullies have gone after my skin, my salivary glands, whatever keeps me from sleeping 10+ hours at a time, a number of joints, including my wrist and thumb which remain swollen despite all my attempts to convince my immune cells to move on and look for tumors, please, pretty please so I can at least open a jar or a door.

That GI reaction means my stomach isn’t processing food properly. We discovered this when I started puking. Anything more than about a half cup. Anything spicy. Let me tell you, you do not want to revisit habanero salsa. Just don’t do it. Thus far, this is the third, fourth, fifth and sixth time I’ve upchucked in more than 20 years. Not a record I was eager to add to. However, it is a great weight loss regimen and I don’t have to pay for a GLP-1!

This has all led to malaise. The kind where you just don’t feel like moving, getting up in the morning, all that stuff. Not to whine: I’m still alive. But I’ve also only had two treatments. A little bit worried that when those bullies move on, they’ll go for some of the organs I kind of need.

Life with cancer

A spicy and rich Peruvian fish stew (chupe) has been a Christmas Eve tradition in my home for more than 30 years.

My last infusion was the day my son arrived in town for the holidays. Made for a really fun couple of days cooking all those traditional foods like the cheesecake, Peruvian fish stew, the holiday cookies … none of which I could eat more than a few bites. It makes me feel like I’m whining when I note he also had a horrible couple of days dealing with my horrible couple of days.

But my brain is still working. It’s better than the brain fog I’ve had in the past with the standard treatments. I want to write. I’m coming up with ideas while driving to appointments. I want to sit down at the computer and dive into my other worlds I’ve built …

But my wrist hurts; I’m running to the bathroom; I’m so tired; I can’t stop scratching; and I’m both hungry AND nauseous … it’s so frustrating. I’m trying to get a new novel ready to go this year and I’m getting nowhere. I want to incorporate some recommendations from a beta reader and polish it a little more. I have another novel waiting in the wings and a short story idea, and a bunch of marketing … and a zillion starred emails for follow ups … but, yeah, no attention span. I think I’ll go curl up on the couch and stare at the TV.

So, here’s me whining with TMI and all kinds of excuses. But at the same time, I at least feel like I’m somehow, potentially, making a difference. It kind of makes the misery a tiny bit more palatable. A tiny bit.

I’m realistic. Only a small percentage of previous (prostate) study participants stayed on the med, for various reasons from medical to physician decision. Of those who remained, it’s uncertain how many saw long-term remission of their cancer. I don’t know how much time I have left, but I know it’s not a lot. I need to find the energy to write, to finish these tasks, to tell my stories. It’s my desperate need to feel like I’ve made a difference for my time in the world: if someone gains a few hours of pleasure from reading something I wrote, it’s really something.

Cover photo of Confederated Salish and Kootenai Tribes (CSKT) Bison Range (formerly the National Bison Range) on the Flathead Reservation, Montana, by Meg Turville-Heitz

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We can put up with a lot of inconvenience and annoyance on our way to a goal. Photo by Meg Turville-Heitz