December 14, 2018
When I went in for my post-surgery/radiation follow-up with the radiation oncologist on December 18th, I wasn’t expecting what came next.
When we looked at the MRI, she showed me that the tumor that was radiated was shrinking, the tumor bed from the tumor that was removed was shrinking (the swelling was going down) so we could start thinking about radiation on that, and then she pointed at the screen and said, “and then we have this thing here.” I asked, “What’s that?”
Dr. P. “It looks for all the world like an abscess.” Goody. Just what I wanted. Another problem. I was admitted to the hospital that night. It was a Friday. I had no inkling there was a problem, much less an infection. I again, had no symptoms. I don’t know what I expected, but it wasn’t this. Being admitted to the hospital wasn’t on my list of things to anticipate. Apparently having a nasty infection next to your brain along with the stress of all of it messes with your logic circuits. So, I went home, packed a bag with some clothes, my phone charger and some toiletries. I got a ride back to the hospital where I got escorted up to a room. The next day I saw a neurosurgeon, the neurosurgery PA, and an infectious disease specialist. They gave me two options.
- Open my head back up and drain it.
- Drill a burr hole, get some of the fluid out and test it to make sure we’re throwing the right antibiotics at it.
I wasn’t thrilled with the idea of having my skull re-opened because I mistakenly thought that the recovery from having a hole drilled into my skull and having a surgeon again messing with my brain would mean fewer restrictions than I had when they cut my skull open to remove the 4 cm tumor in the first place. I didn’t really want to go through all that again, so I opted for the burr hole. Turns out I should have asked more questions. The restrictions and effects of the surgery to drill a hole in my head were about the same. In hindsight, I should have let them open my head back up, drain the stupid thing and clean it all out. At least hindsight is 20/20.
As soon as I was admitted and settled, they started an IV of Vancomycin, which is a pretty strong antibiotic. I was still on steroids, so they kept me on those to keep the swelling under control.
After a week at the hospital in the oncology ward, I was sent back home with my IV antibiotics.
I don’t know if I’ve actually described how my port works before, so I’ll do it now. I have what’s called a port-o-cath that the surgeon put in my chest before I started chemo. The port has a catheter attached that goes directly into one of the big veins near my neck. Some of you may remember the vena cava from biology or anatomy class in high school or college. That’s the vein I’m talking about. The point of the port is to avoid having to do blood draws and give IV chemos, fluids and other IV drugs in my arm every time I go in. Apparently chemo does a number on your veins. Well, that and dehydration. So rather than go on an archaeological expedition every time they need to draw blood or give me chemo/antibiotics, they put a needle in the port instead. It actually hurts a lot less than getting stuck in my arm. The needle can stay in my port for up to 3 weeks at a time. Can’t really do that nicely with your arm even with a a PICC line. I haven’t had one that I can recall, but it’s sort of like the port-o-cath except that it’s in your arm instead. The port’s way easier to manage and is a whole lot more comfortable and unnoticeable. Anyway… back to my tennis ball of antibiotics.
The Vancomycin comes in a pressure-charged ball and I have to administer it at the same time every day. It’s about the size of a tennis ball. They’re shipped to my door on dry ice every couple of weeks. I have to keep them in the fridge and then let them warm to room temperature before I connect the tubing on the ball to the tube from the needle on my port. The ball takes about 40 minutes to empty. You can kind of watch it deflate as the liquid all gets pushed out and into me. I suppose you can do the same with a regular IV bag if you were that bored. The nice thing about these pressurized balls of fluid is that I don’t need an IV pole in my living room, nor do I need to drag one around my house. I can put the vanco ball in my hoodie pocket or next to me on the couch til it’s empty. When the liquid’s all out of it, I disconnect it, flush the port with saline and then a shot of heparin to “lock” it and keep clots from forming in the catheter. Remembering to take it out at the right time was the hardest part.
There’s a special contracted nursing team that comes out to the house once a week to take a blood sample so I don’t have to drive into the hospital every day. I got trained on how to administer my own antibiotic and flush my port every day. The hardest thing about it was remembering to take the Vanco-ball out of the refrigerator a couple of hours before I needed to connect it so that it warm up more to room temperature. This antibiotic has to be taken at the same time every day. I did okay with the Vancomycin for a little bit. I get blood drawn once a week while I’m on these antibiotics. The blood panels include what’s called a vanco-trough that measures the amount of the antibiotic in my blood. There are also panels to monitor the infection and kidney function. Both were starting to go up at the end of December, which basically meant my body was storing this antibiotic instead of processing it, so the infectious disease doctor started talking about switching over to Daptomycin instead. They wanted to watch the panels and see how well I tolerated it as well as look at the abscess before making the change.
Between the time I was sent home and Christmas, the pharmacy called and told me the Vanco troughs are too high so I need to skip some doses. After Christmas, I got a call telling me I need to stop taking it until New Year’s Eve because the numbers were too high. The next conversation was with the doctor because my body’s not properly processing this drug. The next step will be to change the antibiotic.