The rest of Cycle one of CRLX101 wasn’t as uneventful as the first day of infusion led me to believe it would be; I am not unscathed after all. (Did I really venture to say I was unscathed OUT LOUD?) There was actually a bit of scathing that went on as the days went on. No nausea (so far) (although I think I’m safe on this count now) (but I didn’t say that out loud), which had gotten pretty tiresome, but there are some new and impressive side effects to grab my attention, all from the Olaparib, the oral med.
But first, because of the possibility of more hair thinning AND to eliminate evidence of hair thinning from my last trial (which was not a listed side effect), Jessie chopped my hair off. There was enough for Pantene’s Beautiful Lengths program, which makes real hair wigs for women who need them.
Not long after that, the Olaparib made its presence known. At exactly the time that I returned to work as a Mountain Host at Deer Valley. Everything hurt. My bones.. My ribs. My shoulders. Moving. Walking. Breathing. It sucked to be me, frankly. I was concerned enough to reach out to my team at the NIH. Dr Thomas called me back within hours for details. He asked if I’d done anything out of the ordinary. How to answer that? I said I’d been skiing for the first time this year and it was 21 degrees and I was outside most of the day. He said that’s probably what sent me over the edge. He said I could take 2 Motrin (400 mgs). Amateur dose. I’m more of a 600 mgs, twice a day kind of girl. I compromised. That’s all you need to know. The muscle and bone soreness ebbed, but still hasn’t gone away. I’m hoping it will, as I get used to different drugs in my system.
Then, there’s the breathtaking breathlessness. I can’t breathe. Well, I can breathe, but not like I’m used to, with the flexy, resilient, expanded lungs of an athlete. I inhale until my ribs make me say “uncle.” Once again, I’m sure I’m going to give myself Pneumonia, not taking full breaths. Albuterol is (for) now my constant companion. I need it to get out of bed and to go to bed. And for most exertion in between. Training/exercising is a duck in a bar (a joke, my only one). For the first time ever, after weeks of being in my orange (training) zone in my Orange Theory classes 25 minutes or more, I actually goose-egged. And I was working as hard as my lungs and squeezed heart would let me:
Miraculously, my WBCs are not in a drug-related free fall. My RBCs and platelets are a little low, which Dr Thomas says may be a (or THE) cause of the crazy fatigue I have now. (Did I mention I’ve slept more 8-hour nights in the last ten days than I have in all of 2017?). So I am having my first ever BLOOD TRANSFUSION today. And for the first time ever, I know my blood type. O positive. How crazy is it that I haven’t known my blood type until now? Eye roll.
It’s a brave new world. So what’s the positive spin on all of this? If it’s working, this is the first trial I’m in that looks like it’s not going to make me nauseated (I didn’t say that OUT LOUD, ps). I will keep my Delta Silver Status and most likely make Gold shortly. I get to see my family every 11 days (at the most) til whenever. I am well enough to spend time with my friends piling up more adventures. I’m feeling good enough to keep working at my lovely Deer Valley and hope to travel again for Ivanhoe in the next month or so. I recently decided I DO like hot yoga after all (thanks, Angie), which is a good thing because it’s the only thing that makes my breathing and rib soreness abate (somewhat). I WON’T say “At least I’m out there on the bike/tready in the OTF class/Pilates class/yoga class” because I’m used to much more out of myself than that. Plus, that saying drives me crazy, even though I have caught myself saying it more than twice. I still love all those activities for the physical part and the social part. And I’m going to keep doing those activities to build or at least maintain strength and fitness for whatever is around the corner.
For a few days last week, the Olaparib tried to kill my appetite. But my appetite is quite the warrior, and it is back. AND there was fried chicken, corn on the cob and a biscuit on the lunch menu today at the NIH. And life, though challenged in new ways all the time, is good. #Ilovecarbs #defy