We are at MD Anderson for our next clinical trial, BIIB028. Maggie’s fine. It’s been about the 5th worst hospital experience we’ve had but it still beats being here for a week. We’re just waiting out our observation time until we can go home.
We knew today was going to be a long one. The trial requires that we stick around for numerous tests for 8 hours after we receive the trial drug. Our goal was to try and get the drug as soon as possible so that “long day” meant “leaving at five.”
The day kicked off last night, actually, when we came in for blood tests. Maggie brilliantly moved her blood work to Sunday so that we could get in on Monday quickly without any side tracks. Brilliant! And, since it was Sunday mid-afternoon the place was empty so the process was quick and fairly painless.
However, this morning, while we were literally walking in to our 9:30AM appointment (at 9:00AM so we could get started early) the clinical trial administrator called Maggie to tell her that her potassium was unacceptably low. Hopefully, she said, it was lab error but we needed to go get re-tested. The problem is that Mondays are hell days at the specimen collection clinic. And oh, man, today was no different. People spilled out into the halls. It was standing-room only. The disabled and blind were fighting for chairs. Finally, after about 45 minutes of waiting we were done and off to the doctor’s appointment.
We arrived at the waiting room at 10:15AM and into the doctor’s office at 11:30AM. However, Maggie was running a fever of 101.2. The physician’s assistant greeted us with “So you have a fever. We’re going to have to put off treatment for another day.”
Ready for battle, I fired back with a quick recap of how her fever is reoccurring with no detectable cause or other symptoms. I told stories of multiple blood cultures, urinalysis, and antibiotics, all with no pay off. Immediately, as if I had posed a brilliant argument, she responded with “Oh, you have tumor fever. Ok, let’s go ahead with the treatment.” Wha? Our head snapped at how quickly she reversed her position but we didn’t question her.
When the actual doctor came in he asked the same conformational questions about the fever. I fired at him just as vigorously fearing that our treatment was once again at risk. He agreed with the tumor fever diagnosis but told us that we’d still need blood cultures, urinalysis and antibiotics, just in case. Oh, and for funsies, an X-Ray of Maggie’s chest to check for pneumonia. I thought maybe he was kidding about the X-Ray. But the treatment was still on.
We finally got to our little day-room about 12:45PM and I do mean little. It holds a bed for Maggie and a chair for me plus a small sink, garbage can and an IV bag holder. Unfortunately, the nurse tells us, we can’t start the treatment yet because the results of this morning’s blood work aren’t in yet. Fortunately, they continue, we’ve got time because we needed to head across the hospital to get a chest X-Ray. Damn. He wasn’t kidding.
The X-Ray was surprisingly quick. Afterward, Maggie and I parted ways. I headed to the cafeteria to get us food and she headed back to the little room. When I got back to the room I saw just a sad, sad sight. Maggie was laid out the bed like she was being crucified, with both arms held out sideways. She had a pitiful look on her face that seemed to cry “Save me!” There were medical tubes everywhere and two new IVs running from the crook of both her arms. It was just a sad, sad sight. I was so taken aback by the scene that I didn’t even recognize Dr. Lisa in the room with Maggie. But, it was on. Finally.
They started the drip of the new drug at 2:30PM. Just minutes before, a gaggle of nurses and techs arrived to pull what little blood Maggie had left out of her body from each of the various tubes. A number of vials were for blood cultures in yet another pointless attempt to id the source of the fever. A number of others were for pre-drug blood work. In the fray was another tech hooking up an EKG machine to check Maggie’s heart. It was a zoo.
Subsequent blood draws were, as best as I can recall, five minutes before the drug, five minutes after, fifteen minutes after, upon completion, five minutes after completion, fifteen minutes after completion, thirty minutes after start, thirty minutes after completion, and onward. The EKG fairy just popped in randomly, clipped the tendrils of the machine to the little stickers on Maggie’s chest and printed out three sheets of paper. About 4PM things slowed down considerably.
So here we sit until 10:45PM, eight hours after we finished the medicine. Maggie is understandably uncomfortable with the web of tubes in and around her body. But, thankfully, we’ll be done tonight.
We have to return tomorrow for a 2:45PM blood draw and then we aren’t due back until Thursday. And so will go our weeks for a while. We both really hope this works and it will all be worth it. It certainly will be a fight just to keep this treatment on track.