This trip to Philadelphia was supposed to be the second of ten. I was supposed to turn in my dosage diary with its comments about side effects, and receive (a stupid-expensive amount of) Sutent in return. I was also supposed to get glowing marks on my bloodwork. Add in the fact that I was traveling with my mother by train to get to this appointment, and that adds up to a remarkably pleasant way to spend what could otherwise be a depressing trip. Once the Philly part of the trip was done, my mother and father and I were supposed to spend a few more days house-hunting here in Virginia, hoping to find them just the right place so that they can enact their plan to snow-bird back and forth between Florida (anchored by my sister and her boyfriend) and Virginia (anchored by my little family of three). And most of those things happened…more or less.
I shouldn’t be so confused. By now, I should be far more used to uncertainty and the simple fact of not-knowing. Instead, everyone in my family left this trip disquieted, and not much got resolved. The things that did get resolved are good things, but the rest…well, we’ll see.
The train trip itself is generally fun. Yes, Amtrak is old and not in the best of shape, but it’s reasonably well maintained and, frankly, you can’t work on a train without doing it for love (you sure don’t do it for the money). So it’s a very pleasant way to get to Philadelphia from here…except that this time, the train kept pulling exhaust into the air vents.
The hotel I go to is lovely, too–an old, creaky house that’s utterly charming. Just the sort of small-town-vibe I need to feel comfortable in a really large city…except that this time, the concierge was quite the frosty little asshole and somebody in the room above us apparently felt the need to throw furniture at 11:00 at night.
The trial folks at TJU were wonderful as usual. A bit rushed this time–that’s what happens when your doc is trying to fit in every last appointment before flying to Australia for a conference for two weeks.
Philly was interesting, as usual…except that this time, the 22 mph wind in 30-something degree temperatures blowing over banks of old snow made me feel like I’d been shoved into the world’s biggest, filthiest meatlocker.
The bloodwork was all normal…except the part where my ALT was high outside the normal range. “It’s not even a thing,” said the study nurse, waving it away with one hand. “Totally normal for the drugs you’re taking.” Wow. Nothing like cancer to make you feel good about deliberately doing damage to your liver in order to avoid liver cancer. I’ve only been on this drug for a month.
The appointment was perfectly fine…until the study nurse mentioned that there was quite a bit of discussion about whether my OM might actually be forming into a cluster diagnosis. Wait, what? A cluster? As in, “This cancer might have an environmental cause? And there is another OM patient in my exact same small town, who’s even participating in this exact same study? Jesus, what are the odds of that?” The answer? Slim to nil. Suddenly, I was a lot less worried about the potential of having genetically passed this on to my daughter and a lot more worried about, oh, I don’t know, maybe the three million people in the Richmond MSA, starting with my husband and my daughter.
Then I got home and house-hunted with my parents. I’d like to say that any part of it went well, but it didn’t. I’m beginning to seriously consider the possibility that my diagnosis (and the financial discussions arising from it) might be the thing that finally ruptures their 47-year marriage.
I’d like to say that I came home to a loving husband and child. Nope. I came home to a grown-ass man deliberately picking fights with an eight-year-old, as if he were resentful of the time he was forced to spend with her while I was in Philly. I came home to arguments over how I was spending my time, and the money I was spending to do this trial, and whining over how I don’t spend enough time with either of them, or that I don’t listen to them enough.
I came home to a phone conversation with my sister that lasted two hours and ended with me in tears, not because she said anything that wasn’t true, but because it was. There’s nothing like the mistakes of your past to screw up how you handle the emergencies of the present.
If you look at my life on paper right now, it looks peachy. I’m in remission. I’ve got adjuvant treatment. I’ve got a house, groceries in the fridge, and–most importantly of all–a family that loves me. But every single part of this trip came away with a question mark floating in the air, like a storm cloud on the horizon. Every part of this trip had a light side and a dark side, two faces of the same god.
Janus was the Roman god of beginnings and endings, war and peace, birth and death. Transitions were his specialty. He was drawn with two faces, one viewing the future and one viewing the past. I thought I was done with dangerous dualities when Schrodinger’s Cat got found dead in the box. It was a bad outcome, but at least it had been decided.
But I’m living in another goddamn duality’s grip right now. There is nothing like cancer to spur a loving family into dangerous decisions. My family’s financial issues frighten me even less than the scary things we’ve been saying to each other over the last few days. Resentment, recrimination, blame, and sorrow are all part of the night-face of cancer. But none of these things have to be voiced even to ourselves, let alone to each other.
Money can be earned back. But some things can’t be un-said.
I want nothing more than to get together with my entire family and play board games, make and eat good food, watch movies, and laugh together. That’s what our good times look like, and I love them.
But the two-faced fucking god has hold of us right now, and everything we say to each other has the added weight of a thousand mistakes riding on its back–as if the worst mistake I’ve yet made, the greatest pain I’ve yet caused them, is the one goddamn mistake over which I have no control at all.