We’re on vacation this week and we’re supposed to be in Chicago. Abbvie, the company that sponsors the clinical trial I’m in, is holding a conference and invited us to come and discuss what it’s like to have CLL. It is flattering, though there are other people in the ABT-199 trial, my name just floated to the top because someone there read this blog a few months ago. And then they asked us to come anyway. Makes you wonder a little doesn’t it.
The appointment for my last Rituxan infusion of the trial was moved up two days so we could make the trip. Abbvie got the plane tickets, the hotel reservations and the car service. I haven’t been on an airplane (or in an airplane either) in four years and I hear there have been a lot of improvements. It’s actually pleasant now I guess. Lots of legroom, food, drinks, and you don’t need correct change. Right?
So I went in to the clinic for the infusion, did my blood tests and waited an hour or so for results. That’s when the nurse came in and said my counts aren’t good enough to have the infusion.
Seems my ANC is way low. I wasn’t aware the African National Congress had any connection with leukemia, but it turns out ANC is also absolute neutrophil count. Those are the good white cells; the ones that fight infection and disease. The low end of the normal range for that ANC is 1.4. Mine was 0.2. That’s almost bubble boy. My doctor said it will only go up from here. Since the alternative would be a negative number, you don’t really need a medical degree for that conclusion, but I’m glad he said it out loud. Anyway, I couldn’t get the infusion and even had to surrender my pills. We’ll try again in a week. I got a hypodermic in the stomach, a handful of masks, a long list of things I shouldn’t do and told to go home. If I happen to come up with a fever over 100, I’m supposed to go directly to the hospital. Do not pass go.
And we had to cancel the trip. It’s everything that’s on the list – crowds, restaurant food, airplanes, mold spores. The biggest worry was the flight. We had chosen Petri Dish Airlines. It’s the very definition of an air carrier, in every sense of the word.
The good news is, we won’t be in Chicago this week where the high temperature is supposed to be 35 degrees, and the warmest thing I own is a sweater. The bad news is, we were looking forward to getting away, even in a polar vortex and the whole idea of the conference was interesting, bordering on exciting.
The good news is, last weekend (before I knew I was a 220 pound delicate little flower) I was hauling sand and cement and making a flagstone path in the back yard and today that job is far too dangerous for me. The bad news is, the path is only a third finished and is not going to finish itself.
The good news is, if I can’t build the path and do the rest of the yard work, I can still play golf. Golf’s not on the list of immune threatening activities, provided I soak my balls in Purell, and who’s ever heard of anyone dying on a golf course? The bad news is, my Dad died on a golf course, actually.
The good news is, the trial has been working spectacularly and I’m very optimistic about what we will find (or not find) next month when I have a CT scan and bone marrow biopsy. The bad news is, all this bad news is not helping my mood, particularly since my optimism quotient is naturally lower than my ANC.
You might say it is the best of times, it is the worst of times. (That just might catch on).
“Tis a far, far better thing I do this day….” Onward, albeit not upward!
Sorry to hear the news which lead to the cancellation of your trip to Chicago. A shame, the Cubs are doiing very well this winter. However, airline services has not improved–if anything its torture unless you pay the extra two grand so you can stretch your legs. Just as well you stay close to home and work on your putting. less stress. Please dont call me to help finish the yard work, I recall the last effort involving flagstone–I want NO part of it. hugs
Stay-cation=do stuff around the house.
Dear Lee,
You are amazing — thank you for letting us know, thank you for your ever and always humor and storytelling ability, and for sharing it.
I am SO very sorry that you won’t be able to immediately enjoy the elegance of the 2014 traveling-by-air experience. May you be well enough to travel again soon. We’d hate for you to miss the airlines in their current stage of relaxed and roomy and generous graciousness.
Mostly though, hoping your numbers improve soon and that the upcoming tests bring lots of good news.
And of course, that the elves show up to magically finish the flagstone path.
Sending so many good wishes.
Joan
Lee: great article, as always, but I am stuck on that whole “soak your balls in Purell” thing. How does that help your golf game? Don’t want to sterilze that putter, ya know.
Hey Lee. The good news is, you’ll be able to celebrate your birthday with the people who matter the most!! The bad news is, you have to miss the fun of saying “cold enough for ya” over and over.
Warm Hugs,
Pat
Hi, Lee, Poignant and funny at the same time. Having recently returned from a trip to Eastern Europe, I can say you are least fed tasteless food–and depending on the airline (not United) and free wine–given a pillow and blanket on flights overseas and you get a choice of really bad movies. Hang in there and keep posting. Love ya, Linda