Health Update
Jul. 20th, 2017 09:16 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
randy_byersIt's been a couple of weeks since I last posted about my health. So here's the latest.
I had another seizure. It didn't fully develop, because I felt it coming on and ran upstairs to take a Lorazopam, which is intended to stop seizures in their tracks. This one kept coming on, moving past the shuddering in my chin and jaw that is the first sign of a seizure for me. So I ran back upstairs (evidence that my seizures are NOT grand mals) and took another Lorazopam. I also told Denys what was going on, and he called the nurses station at the Alvord Brain Tumor Center. By the time he got someone on the line, the second Lorazopam had pushed the seizure back, and I was able to tell Mandy Myers (yes, her real name, which has given us a special bond) what was going on. She didn't seem too concerned about the seizure, and basically told me that the increase in dosage of my regular anti-seizure med (a generic version of Keppra) probably hadn't taken effect yet. I was to call if I had any more seizures.
Previous to this episode my sister and I had seen a new physician's assistant at the Center, and along with increasing the dosage of the Keppra, she told me that the plan was to switch me to a new chemo called Lomustine and discontinue the Temodar. This was fine by me, since it felt like my body was done with Temodar after thirteen monthly rounds, nor to mention the daily "micro-doses" that I took on my Micronesian trip. I felt exhausted all the time, could no longer walk more than a few hundred yards at at time, and was sleeping more than half the day. I felt very uncertain of my balance and felt miserable in general. I liked the physician's assistant, whose last name is Stockhausen (I didn't ask if she was related to the composer, but I probably will if I see her again).
Hopefully switching to a new chemo will help with some of my problems. It has taken quite a while for my insurance company to agree to subsidize it, and I'm supposed to receive my first dose today. This one is a pill that I'll take once every six weeks, rather than the five days our of every 28 of the Temodar. I'll still be getting infusions of Avastin every two weeks, and I'm beginning to wonder if that's what's making me feel so worn out and weak. Or it could be that sixteen months of treatment has taken its toll on me.
Anyway I haven't had any further seizures, although I've given up caffeine because it was causing premonitions of seizures, and I've taken a precautionary Lorazopam a couple of times when it felt as though something was getting started. The PA also wants me to work with my physical therapist to build up my core strength, but the PT has been sick for a couple of weeks, so we haven't started on that yet. I've been trying to take little mini-walks every day to see whether that helps. I hate feeling this weak!
But I'm trying to be patient. In a way, none of this is a surprise, but just because you know chemo is going to knock the stuffing out of you doesn't mean you'll be ready for how it FEELS. It feels like crap, and I begin to wonder how much more treatment I can take. I guess I'll see how the Lomustine makes me feel and what the MRI in August shows.
I had another seizure. It didn't fully develop, because I felt it coming on and ran upstairs to take a Lorazopam, which is intended to stop seizures in their tracks. This one kept coming on, moving past the shuddering in my chin and jaw that is the first sign of a seizure for me. So I ran back upstairs (evidence that my seizures are NOT grand mals) and took another Lorazopam. I also told Denys what was going on, and he called the nurses station at the Alvord Brain Tumor Center. By the time he got someone on the line, the second Lorazopam had pushed the seizure back, and I was able to tell Mandy Myers (yes, her real name, which has given us a special bond) what was going on. She didn't seem too concerned about the seizure, and basically told me that the increase in dosage of my regular anti-seizure med (a generic version of Keppra) probably hadn't taken effect yet. I was to call if I had any more seizures.
Previous to this episode my sister and I had seen a new physician's assistant at the Center, and along with increasing the dosage of the Keppra, she told me that the plan was to switch me to a new chemo called Lomustine and discontinue the Temodar. This was fine by me, since it felt like my body was done with Temodar after thirteen monthly rounds, nor to mention the daily "micro-doses" that I took on my Micronesian trip. I felt exhausted all the time, could no longer walk more than a few hundred yards at at time, and was sleeping more than half the day. I felt very uncertain of my balance and felt miserable in general. I liked the physician's assistant, whose last name is Stockhausen (I didn't ask if she was related to the composer, but I probably will if I see her again).
Hopefully switching to a new chemo will help with some of my problems. It has taken quite a while for my insurance company to agree to subsidize it, and I'm supposed to receive my first dose today. This one is a pill that I'll take once every six weeks, rather than the five days our of every 28 of the Temodar. I'll still be getting infusions of Avastin every two weeks, and I'm beginning to wonder if that's what's making me feel so worn out and weak. Or it could be that sixteen months of treatment has taken its toll on me.
Anyway I haven't had any further seizures, although I've given up caffeine because it was causing premonitions of seizures, and I've taken a precautionary Lorazopam a couple of times when it felt as though something was getting started. The PA also wants me to work with my physical therapist to build up my core strength, but the PT has been sick for a couple of weeks, so we haven't started on that yet. I've been trying to take little mini-walks every day to see whether that helps. I hate feeling this weak!
But I'm trying to be patient. In a way, none of this is a surprise, but just because you know chemo is going to knock the stuffing out of you doesn't mean you'll be ready for how it FEELS. It feels like crap, and I begin to wonder how much more treatment I can take. I guess I'll see how the Lomustine makes me feel and what the MRI in August shows.
no subject
Date: 2017-07-21 04:06 pm (UTC)no subject
Date: 2017-07-21 05:30 pm (UTC)