I’m on a Southwest plane on the way back to Maryland/DC. I just spent six weeks at home in Park City, for the first time in about three years, I believe. It’s been terrific. I have been able to host friends and family, reconnect with local lovies, gain traction with my training, and set up a bit of a routine. When your Big Picture is unstable, having a bit of Regular Old Lifestyle for six weeks is huge. I’ve enjoyed most of it, and it’s helped me get more than 50 days on skis this season.
I’d be lying if I said I hadn’t thought about this return visit to Georgetown two or 200 times since last time. You may remember that Dr G reduced my drug dose last time because my Amylase levels had been too high. I’ve had two blood tests since then, and those levels are still too high. In fact, as of two weeks ago, they hadn’t come down significantly at all. Dr G kept everything status quo, but we’ll see what happens Thursday. Which comes after Wednesday. Which is my first CT scan since my dose was cut 30-percent. We know the drug works for me at 100 percent. We don’t know if it’s working at 66 percent.
Because not-so-random things happen to me at opportune times, I was contacted by another of Dr G’s patients not long after I got back from Georgetown last time. She’s the first person I’ve talked to who’s in my trial. There are only a handful in this country (this drug has only worked for about ten percent of people in the trial). I don’t remember connecting with her before, but she certainly sounded like we had. She just wanted to compare experiences as far as I could tell. One Super Fact she shared was that her dose was cut 30-percent almost immediately after she started the trial last year. The drug has been working for her, and it’s been about six months. Everyone is different, of course, but her message was received with gratitude, and a bit of amazement at the timing.
Still, I know a message is just a message. In real life, my life could be on a different, again uncharted trajectory in the next 48 hours. I’m not panicked or afraid. I’ve been here before, a few times. I have a rough idea of roads I can take if I have to, but it has been lovely being on THIS road for the last year and a half. The lower dose of PHA drug has taken some of the edge off of its side effects, although I still can’t feel most of my feet or my fingers and drinking wine STILL isn’t awesome. (What is UP with that?) My cancer care doesn’t give me much stress, and that’s the truth, but months of not having to make decisions about how to save my own life has been rather awesome. Here’s to hoping that that phone call was actually a harbinger of more uncomplicated months to come.
Seems to me it would be fair for the rest of the Real World to keep turning uneventfully while I fight battles against my own cells. I’m a Libra, for goodness sake, I seek out balance and fairness for all. But my life’s not a movie, and I don’t get to write the script (even though I think I’d be pretty good at it). And what’s fair? Pretty much every headline is announcing a story about something that’s not fair. I find myself having to work through issues that aren’t part of my cancer fight. I’m not sure why I find this so unreasonable, but I do. “Fair” would be my cancer fight acting as kind of a force field against things that are sucky. I joke that I want to the earth to be my satellite and revolve around me (was this line from a movie?). That way Real World issues could stay out of my gravity. But that’s not the real world, I suppose. The unreasonable happens. In any case, things will come back down into a regular orbit. They always do.
In the meantime, my life could completely change by Thursday. Or not. One thing is for certain (probably): I will be on a beach in Phuket in two weeks. Defy.