Par For The Course

After bouncing off the walls and being too wired to sleep for almost 48 hours straight because of the Decadron and prednisone (steroids), I crashed and burned at about 5 am Saturday morning and slept for nearly 13 hours straight. I got up long enough to eat something, take meds, and went back to bed. Fortunately, I checked my phone when I surfaced briefly Sunday and discovered a text message reminding me about an appointment on Monday (which nobody had bothered to mention), which I would have missed if I hadn’t checked my phone.

I was supposed to be there at 9 a.m. Monday so I was there at 10 of so I could wait for over an hour before even going back to the infusion area. It was after two by the time I got home. Fortunately, I was able to sleep during the liter of fluid which I was there to get, because that was all I wanted to do. I was so tired after I got back, I laid down and slept through supper. Fortunately, I had some frozen dinners I could eat.

While I was there, I also discovered I have another appointment at JACC Wednesday, which nobody bothered to tell me about either, which was at the same time as a VA appointment I’ve had scheduled for over a month. It took two days to cancel and reschedule the VA appointment, because JACC appointments are more important than VA appointments right now. I need to leave a message for my oncologist’s nurse, to the effect that it would be very helpful if I could be given a list of ALL my appointments for the next cycle of chemo BEFORE I start the cycle, instead of finding them out from phone reminders the day before.

Friday, while I was bouncing off the walls, I frogged the hat. I wasn’t in the mood to futz with it anymore and besides I had never really liked the way the center section looked. I restarted it and it looks much better now. I’ve been monogamously knitting on it since and have already gotten it to where it was when I frogged it.

When I got my hair practically buzz cut week before last, the hair on both sides along where side parts would have gone just wanted to stick straight up. I’d washed it several times since I’d gotten it cut, and that hair continued to stick straight up and would not lie down. I tried brushing it with the “grain” when it was wet, but no soap. I hate putting “product” of any kind on my hair (hairspray, mousse, styling gel, wax . . . ) and I wasn’t about to put goop on it to make it lie down and have the goop rub off all over my pillowcase. If it wanted to stick up, then so be it. This time when I washed my hair, it laid right down just as pretty as you please. Go figure.

So, I am now right at the point in my chemotherapy cycle where I’ve just had a massive dose of toxic drugs which is killing off my white blood cells and knocking my immune system for a loop. Even though this was followed by a shot to stimulate my body to produce more white blood cells, there is a several day time lag before my body can make enough white blood cells to keep me from being easy prey to whatever germ comes along.

This is the point when I am very vulnerable to infection and I need to stay isolated, especially from the kinds of antibiotic-resistant germs that are rife among the elderly such as MRSA and C. difficile. “Antibiotic resistant” means that the antibiotics used to treat infection with that germ don’t work very well any more (or at all in some cases). If I get exposed to one of those nasties, I have no immune system to protect me. I am at risk for developing an overwhelming, life-threatening infection (sepsis) that will make me so sick, so quickly I could die within a day or two because there’s no effective treatment that can work fast enough to stop the infection before it kills me. I can’t seem to communicate to anybody how real the risk is that I’m running right now.

So what happens? My mom calls me this evening. “There’s something the matter with my tablet. Can’t you put on a mask and come over and fix it?” No, mom. I can’t. I don’t dare.

Her friend CK is out of town right now and won’t be back for at least a week. So, now I’ve got to see if I can get somebody else to go get her tablet and bring it to me to sort out and then have them take it back to her. There’s no telling what she’s done to it. Frankly, I’m just too tired to think about it right now.

Chemotherapy is exhausting. Nobody seems to understand that. I just want to sleep. But I have to get up and go to JACC tomorrow for another liter of saline, and by the time I get home from that, I’ll be so exhausted I’ll be lucky to get my clothes off before I fall over onto the bed. Hopefully, the food I ate before I started this post has “gone down” now and I can go back to sleep.