January 5, 2019
After going through all the admitting procedures, scans and tests, I was exhausted. I was still trying to process finding yet another metastatic tumor in my brain. It grew there in only 3 weeks’ time. From what I’ve learned since, the steroids help create an environment that’s friendly to cancer. Awesome.
This feels sort of like deja vu except that instead of the oncology floor, I’m back on the neuro floor. This means that a nurse comes in and does neuro checks every 2 hours. There have been a couple of doctors in to see me. A handful of residents, a couple of hospitalists, a neurosurgery resident, and maybe a couple more that I can’t remember because not only was my brain not working from chemo, being exhausted, stress and the abscess, there were just too many to remember them all. All of them insisted on doing neuro checks when they came in the room. The nurses were vaguely amused that I could anticipate which test was next.
On Friday night before all this mess started, my left arm started twitching like crazy. There were a couple of ways I could get it to calm down but it just didn’t stop. I felt like it was a side-effect of one or both of the antibiotics. They decided to keep an eye on it. The interesting part was that no one could see or feel it except me. By the time I get to the hospital, I can’t walk by myself, even to go to the bathroom. I have a nurse that comes in and puts a gait belt on me and I get to use the bedside commode. Now I’m feeling pretty crappy in general so I don’t really care that much about peeing on a chair made of PVC plumbing pipe in the middle of my room as long as I am not wetting myself or the bed. So much fun.
Then I discovered that my cell phone isn’t charging. We tied plugging it in different outlets in the room. No change. We tried a different charge cord. Still no change. This isn’t as huge a deal to the nursing staff as it is to me, so basically, unless I can find someone local to do something about it for me, I’m stuck with no phone other than a landline. Remember the part where my memory is absolute crap after chemo and it’s somewhat worse after all this abscess stuff? Yeah. I don’t know anybody local’s phone number. They’re all stored in my dead phone. The only people whose numbers I can remember are my parents, my sister, and my aunt. This is only because I call them regularly from my car and because its voice recognition is about as useful as using a pitcher to eat cereal, I don’t know any of my coworker’s numbers. I don’t know any neighbor’s numbers. I only know a couple of neighbors’ last names. but it doesn’t occur to me to have someone look any of them up. I did have my mom try to contact the coworker who was with me the night I got admitted. Her husband is a photographer so I had my mom chase him down and asked him to have my friend contact me at the hospital.
Another fun fact. The hospital room phones have no voice mail. They have no rollover to any nurse’s station or anywhere else for that matter. If you’re not sitting next to it and can’t otherwise answer it, you’re out of luck. I got one message from my friend via the charge nurse. We couldn’t connect because right after I got admitted, she and her husband went out of town and weren’t available to help anyway.
Things are calming down a little and I still can’t really stand up on my own or walk anywhere by myself. I can get around a little bit with a walker in my room. So at least I can use the regular bathroom instead of the bedside commode. I’ve had a shower, which felt good. I was starting to feel pretty gross. I had a Physical and Occupational Therapist come by. Thankfully, they decided it was also time for me to start brushing my teeth again. I don’t feel quite human yet, but I’m not feeling worse. Bonus.
We’re in the process of deciding next steps. They’re talking about sending me to an acute rehab unit. I’m also due for a Kadcyla infusion on the 12th. Partly because I can’t go home by myself and partly that even if I had help at home, I couldn’t go up and down stairs or anything like that anyway. I’m still a huge fall risk. I’ve already taken a good fall at the hospital with the walker on my way back to bed from the bathroom. I didn’t get particularly hurt. Just a bruise on my back. Don’t ask. It was more of a surprise than anything else. I still feel bad for the nurses and nurse’s aide that had to do all the paperwork on that.
I have a social worker that’s helping figure out the insurance part of rehab and then there’s the conversation about whether I can get the chemo infusion there or not. When all is said and done, I’m moving to a rehab unit at another hospital on the 12th. Before I go, I’m moving to the oncology floor again so I can get my Kadcyla infusion before I leave because there isn’t room for me in the oncology unit there at the other hospital and the acute rehab unit can’t/won’t do the chemo there. It’s a training and hazmat issue for them. The infectious disease doctor returned from vacation today. I finally saw him around 8 pm. He said it looks like the Daptomycin is working better than the Vancomycin. I’ve got to be on this stuff for at least a month before we’ll know if the infection is cleared up or not. Fun stuff. Soon I’ll be off to rehab.
One really nice thing that happened this week is that my oncologist stopped by and dropped off a really beautiful quilt that she’d gotten from another patient whose friend made it. The colors and pattern were perfect for me.