Yesterday I embarked on a new phase in my treatment.
After all the anguish I experienced making this decision, after all the time and energy I spent going back and forth between my oncologist and my second opinion, it seemed anticlimactic to just fall into the option that made the most sense in the moment and allowed me to begin treatment the quickest. I’ve been off chemo for over a month now, though–I was getting desperate.
So, last night before I went to bed, I opened one of the blister packages with my new drug in it, took the drug, and went to sleep. And suddenly today i’m on chemo again.
I enter this new phase a little wiser than when I started the last phase a year and two months ago. Most importantly, I know now from experience that this new type of chemo i’m on won’t work forever. In fact, it might not work at all. Or it might work for six months or nine months or a year or many years. Time will tell. As my oncologist says, “Doctors aren’t very good at telling the future.”
Unfortunately, the “wiseness” that comes with having done this before also brings with it a little cynicism. I have heard a lot about this new drug that i’m on before, and not all of it has been good. It supposedly has few side effects like the others, but in the trials it did not last as long nor shrink the tumors as much as the chemo I had to stop. It’s also very similar to the first drug I went on last year that didn’t work at all. But it’s something, at least, and if it doesn’t work then I will know relatively quickly and I can move on to something else. On the flip side, I suppose it could also exceed everyone’s expectations and melt the tumors away.
I’m getting it through a clinical trial, which sounds more exciting than it actually is. By signing up I had the potential to either get this one drug alone, or this drug paired with another drug to test whether the two together work better than the one alone. I just got the one drug. Because I had so much trouble deciding what to do, this outcome actually added less variables to the decision and made me feel more at ease in starting yesterday. But it also added somewhat more certainty to the outcome. There is clear data on the drug. It works in most people. It usually lasts for a year or less. It doesn’t shrink much. What if the new combo works better than the one drug i’m getting alone? What if it could have been a cure? I see some benefit in finding some treatment that i’m really excited about any trying that–at least I would have something to believe in. Being a liver is something, but I don’t feel like i’ve been very good at it lately. And it’s not a cure.
When they say pancreatic neuroendocrine cancer is like a chronic condition, I always knew that meant that I would probably have this forever. But I thought it also meant that my condition would remain in a relatively constant state forever. I didn’t account for these changes in treatment plan. Let’s hope the next change is easier–and more inspiring.