So as not to bury my lead, let me say what I already knew (on the inside): The first CT scan of my trial shows mostly disease stability with potentially some shrinkage. I figured the drugs were working because the heart and rib pain I’d had for weeks (months?) is mostly gone. A few days ago, it dawned on me that I have no sharp pains anymore (to be replaced by dull, achy pain. Explained later on.). Plus, it would have been incredibly unfair of the universe to take most of my hair AND to have the drugs not work. This means I will continue the CRLX101 trial for two more months. Eventually, but not immediately.
That’s right, my whites are descending. And this time, they’re taking my reds with them. Or maybe it’s the other way around. First, the reds. My red blood count was low enough that I got another blood transfusion yesterday at the NIH.
Low reds are probably what are making me so tired. That and the fact that Delta gave me a 30-minute connection in Detroit and we left Salt Lake 40 minutes late. That math ain’t hard. I finally got in to DC at 11:45 pm and RAN to the Avis counter to get my rental car before they closed at midnight. But I digress. Last time I got a transfusion for low reds, I could still get the infusion. This time, my ANC (the count of mature and baby white blood cells) is 1200 and I need 1500. Despite the fact that 1200 is really good for me, it’s not enough to avert a trial delay. At least in this trial, I am allowed to dope. I have Neupogen, a drug that encourages WBC production in the bone marrow. I have three vials, which I’ll inject over the next three days. One of the side effects I actually remember from Cancer 101 in 2001 is that the dull ache in my bones as the WBCs start to multiply. I gave myself my first shot late yesterday, and by dawn today, my lower back felt like I flew coach to Europe. I’m coming to think I’m getting more benefit from Motrin than I am from all the other vitamins and supplements I’ve been taking for years.
I could have gambled and stayed one more day in Maryland to get another blood panel done, but I remember this reindeer game from my first trial for Sutent. That drug worked like a miracle drug for me, but demolished my WBCs. I would get repeated labs done, hoping to goose my counts up to avert a delay, and usually failed. So I’m on the way home to Park City and will return for more labs and hopefully the infusion and Olaparib next week. (Maybe I’ll get whatever Delta status comes after Gold. Maybe by summer.) One thing I WON’T do is skip my Orange Theory class before getting my blood drawn. I got in so late on Monday (thanks, Delta) that I canceled my spot in the 5 am class. I had been starting to think the cardio boost for a WBC boost was mostly superstition on my part anyway. I don’t know why I thought that; I’d seen it work repeatedly over the past few years. Dumb me. I won’t sleep in (!) again. In fact, I’m already signed up for 5 am next Tuesday with JT.
I did make the most of my DC visit though. I’d been dying (!) to see The Nutshell Studies of Unexplained Death
at the Renwick Gallery. Back in the 40s, Frances Glessner Lee started making dollhouse-sized recreations of murder scenes to help police detectives. This exhibit has immense appeal to the part of me that can’t get enough about serial killers (TMI, I know). Anyway, it’s fantastic, and the Gallery did an amazing job of producing the exhibit. There are mini flashlights at every diorama so you can sleuth around. I was delirious. (PS The exhibit opened on MY BIRTHDAY, but it closes this weekend)
And Sheryl found a grilled cheese restaurant called GCDC right down the street, so my day was complete. Especially when my mom ordered (and ate) a kim chee GC. Ew.
Also, it’s Sundance at home. I’ve worked a few days for PCTV, doing the morning In the Can show with Terry. That’s the one where Terry does all the work getting directors, actors, writers, makers of film to come to the studio and I get to help him interview them. Highlights so far are Betsy West and Julie Cohen, who made RBG, a doc on Supreme Court Justice Ruth Bader Ginsberg, and Daveed Diggs (HAMILTON Tony Award winner) and crew from Blindspotting, which I have yet to see.(Thanks a lot, Sundance. Long story.)
And I only did two Red Carpets this year. For Come Sunday (My favorite film to see this year so far) and, of course, the Paul Rudd movie. I told him I look forward to seeing him every 365 days.
I’ll go home for a few more days of Sundance and a day on the mountain at Deer Valley. I’ve already canceled or rescheduled almost everything I had in the day planner for next week. I had felt somewhat confident to make longer range plans based on an every other week travel schedule to Maryland, but that’s foiled now. I suggested that I delay two weeks rather than one so I could keep my original schedule, but my clinical trials nurse, Linda, said there could be another week delay and then I’ll be back on track. She’s smart, that one. And here’s a bit of a silver lining: The Caps play the Flyers next Wednesday. #Unleashthefury #Defy