Monday, April 6, 2009

Oh, no: placebo

I quickly realized I would probably be able to guess whether I was randomized into the drug or placebo group, but I wasn't in a hurry to figure it out.

When I began the clinical trial, Brivinib spiked my blood pressure to 160/101 and beyond; a normal reading for me, even now, is more like 135/85. After getting out of the hospital, I kept my head in the sand for a few days: I felt fragile and I didn't want to find out I might likely be on placebo. By this weekend, though, I knew I needed to check; you can't walk around unmedicated when you're busting triple digits on both your BP numbers. My reading was something like 110/60. A visiting nurse who came by to pull my stitches the next day got a similar result.

So it looks like I am not on the drug. I haven't taken beta blockers for close to a month now, and Brivinib/placebo is doing nada to my pressure a week or more after I restarted taking the pills. The positive spin, I guess, is that my blood pressure is still low, so perhaps the beta blockers are still active in my system, masking Brivinib's activity. Or it may be the pathways that regulate my blood pressure have adapted to the Brivinib and they no longer go crazy when exposed to it. But in my heart I feel like I'm not getting the drug any more, and I haven't slept a decent night since I found out.

After I got that first, fateful low blood pressure number, L. asked me what I thought it meant, and then she asked me how I felt. The most reasonable questions in the world, but I couldn't answer the second one. How did I feel? I felt terrible. I felt numb. The hardest part of all this isn't the operatic rage -- the shouting, the sobbing, the almost overwhelming pain that yesthisishappeningandnothingcanSTOPIT -- because that makes sense. It might even make you feel better. The worst is the numbness, the feeling that I've lost another little bit of my humanity because I'm too exhausted or sad to know how to respond. I hate the idea of being seen as an invalid by people, because there's so much here; I am boiling over with creativity, love, generosity, life. And other times, like when you finally get some indications (*) that something is working for you and you have to stop because you fell on the wrong side of some BS rules, you feel numb, and drift, and amble through sleepless nights without even knowing why.


(*) But here's the good cancer voice: "But you're going to get back on the drug eventually if indeed you are on placebo, which you don't actually know you are, you only suspect. Plus, you can actually breathe. And tell them about the other good news besides the shrinkage in your big tumor: The swelling in your perineum, which increased some when your disease was progressing, shrank back during this most recent Brivinib cycle." So there. Thanks for your contribution, Good Cancer Voice.

1 comment:

Kathy said...

I'm on the placebo too. My blood pressure was unaffected by the drug but I did experience light headedness and thirst. I woke up every morning feeling tired. I experience none of those things now.