infusion

Down and Down

~ Lee Swanson ~ 7 Comments

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).

Breakfast and Infusion

~ Lee Swanson ~ 2 Comments

Photo of PillsBreakfast and a handful of pills. How does your day start? One of the rules of the clinical trial is that I take my pills within half an hour of breakfast. And I have to keep a journal of that.

It’s a funny little journal. They want to know what time I took the pills, and what time I finished breakfast, in that order. The last event first and the first event last. There’s also a column that asks if I ate all of my breakfast, and if not what percentage of it I did eat.

Now, sometimes breakfast is a muffin and a cup of coffee. Sometimes cereal and coffee. Occasionally an omelet and coffee. It doesn’t seem to matter to anyone how big the breakfast is, just how much of it I eat. No one explains why. No one seems to know. For those who are curious, I always eat it all. Because, you know, starving children in Africa…

This day my first stop is the clinic. Infusion day. I always call it a clinic because infusion center sounds so cancerous and La-z-Boy gallery so unprofessional. But it does rather resemble that. A room full of recliners, separated by curtains. But let’s back up. To get the full flavor of the experience we have to start in the lobby.

Someone decided it would be a good idea to get a bunch of modular chairs and couches arranged in U shapes so people could be comfortable while they wait to check in. From that you might get the idea that the check-in process can take a while. You would be right.

The furniture, however, is anything but comfortable. Like all the furniture in the entire building, it is vinyl. If you wondered what had become of Naugahyde, wonder no more. It’s all here. It’s boxy and upright with chrome legs. Mounted on top of the couches is a frosted Plexiglas plate to separate your U-shaped couches from the ones behind you. Who designs this stuff? It’s part conversation nook and part cubicle. And they’re kind of scattered around the lobby in front of the check-in desk.

Okay, so settle in and wait to check-in. Except for the sign that says “please form a line here and wait to be called.” They went to the trouble to buy insanely ugly furniture and then tell you to stand in line. So you can scatter around and sit, but then you don’t know when it’s your turn. Or you can stand. Let’s just say it wasn’t thought out very well. They ought to make us take a number, but then they’d have to admit the whole check-in process is broken.

Eventually I get my paperwork and go to the next lobby. And when my name is called in there I finally get into the clinic/infusion center/la-z-boy gallery. Usually it’s now somewhere between thirty minutes and an hour after the time of my appointment.

They take vital signs, look for a vein, start an i-v and call the pharmacy. It apparently comes as a big surprise to the pharmacy that anyone is there, as it takes another half hour for the drugs to finally arrive.

By now I’ve finished two or three days worth of Times crosswords and if I didn’t bring my laptop, I have to watch TV. It’s a ten inch screen attached to an arm on the wall. I pull it out and hope it works. It gets about fifteen or twenty channels, and often pushing the button to change channels will adjust the volume. To be consistent, adjusting the volume often changes channels. And like all TVs, there’s nothing to watch. Unlike all TVs made in this century, it has tubes.

I’m not complaining, even though I am. It’s better that they spend money on test tubes and Petri dishes and researchers than flat screen televisions and designer furniture. It’s just curious that it can be so cutting edge and so antiquated all at the same time. And the truth is, I love the place. I actually look forward to going there. It’s less than perfect but they’re doing some cool things in there.