January 2, 2019
After restarting the Vancomycin on the 31st, the panels are still too high. So we’re switching to Daptomycin on the 5th.
On the day that the nurse was coming out with the Daptomycin, I started noticing that I was feeling weird. When she first arrived that afternoon, I told the nurse that I felt like I was walking like I had a stroke. I wasn’t really feeling my left foot. Now, this is new because I hadn’t had neuropathy on that side at all, and I wasn’t recognizing it as anything like that. The neuropathy I had on the right side was more tingling and more in my toes than my entire foot. My left arm/hand were feeling more numb, too. I would like to think that if I were any kind of a nurse and a patient told me that anything was going on that made them feel like they’d had a stroke, I’d take notice and start asking questions. This nurse didn’t.
I had invited a coworker over for dinner and to watch a movie. We decided on fried chicken from Church’s for dinner and to watch the special on R. Kelly instead of a movie. The nurse had stopped by around 4 pm. She left and went to their office to pick up the Daptomycin and some other things, and I assume, to get herself some dinner. She left my place in the middle of evening rush hour. While she could get to their office by taking “back” roads, it’s still not a fun drive at that time of day in the dark in the middle of winter. My friend arrived maybe 30 minutes or so before the nurse got back, which was about 7 pm. She brought the syringe of antibiotic and had to stay and watch me for an hour in case I had an allergic reaction to it. So we started watching the TV special and eating our chicken and cole slaw. Everything was fine. The nurse left after the hour she had to stay, so around 8 pm. While we were watching the R. Kelly thing, my friend looked over at me and told me my face was getting really red. I didn’t feel the flush or anything on that side. I usually flush from chemos anyway, so I wrote it off to that. After a bit, I started noticing tingling on the other side of my head/face. I mentioned this to her. She kept an eye on my face and said about 3 minutes later that my neck had big red blotches on it. She took a picture with her phone and showed it to me. I was a little concerned because the tingling in my face wasn’t going away.
Around probably 8:30 or 9:00, I wasn’t feeling right. Along with the blotching I just felt something wasn’t right. I told my friend I was going to go pack a bag and she could drop me at the ER on the way home. This made sense because she lives on the other side of Seattle, and the hospital downtown would be pretty much in the middle of a loop she could take to get back home.
This may sound nuts but I know what anaphylactic shock looks like and I wasn’t having any of those particular symptoms. I could breathe fine. That wasn’t changing. My lips weren’t tingling or turning blue. Nothing was itching. So, I went up to pack the bag. I got some clothes together and had my phone charger and most of my toiletries in the bag. I was in the bathroom and started feeling more weird. Not dizzy really, but not really here, either. I sat down on the toilet seat lid and promptly slid off onto the floor.
My friend yelled upstairs and asked what happened. I told her that I’d fallen onto the floor. She asked if I was hurt. I told her I was still assessing. I was worried that I’d put my hands out to catch myself and sprained my wrists or something again. I wasn’t in any pain. I didn’t hit my head. But… I couldn’t think straight. I remember sitting on the floor and thinking, “What is going on here?” When my friend came upstairs, I couldn’t get up off the floor. I had no strength or coordination. I couldn’t figure out how to get on all fours. I sat back down on the floor and tried to think. Tried being the key word. I decided that I’d scoot out to the hallway and call 911. My friend thought that was an excellent idea. While I was doing that, she went down, unlocked the front door and came up to help get the rest of the bag packed.
I called 911 and told the dispatcher what was going on. He thought I was having an allergic reaction. I told him, no, it wasn’t an allergic reaction but some other kind of drug combination reaction or something like that. About the time the bag was all packed, the fire dept arrived. They also determined it wasn’t an allergic reaction, so we opted to try to get me up and walk me down the stairs. That was a fun adventure. My left side was pretty much useless by this point. It was like walking Gumby or more like taking a Slinky down the stairs.
I had a death grip on the fireman in front of me’s hands. One of the other 2 firemen had the band of my sweat pants in his hand. He was basically doing bicep curls every time I started to lose my balance all the way down the stairs to the front door. So basically, this fireman behind me gave me repeated wedgies all the way down the stairs. Instead of going to the local hospital they said I could go with my friend in her car to the hospital downtown, so that’s what we did. We promised that if anything changed we’d pull over and all 911 again.
We made it downtown. It took 5 people to get me out of the car and into a wheelchair. I was in the ER for several hours. They came and took a bunch of blood samples, a chest x-ray and took me for a CT of my head.
I learned that in the course of 3 weeks, not only had the infection not started going away, but was getting worse, I also had a new tumor in my brain, this time in my cerebellum. It was pretty small, about 6 mm, but a new tumor nonetheless.
I got admitted again. I think I finally got up to a room around 3 am or something like that, and I was past exhausted.