Routine Treatment and Detailed Considerations
I've had my latest monthly meeting (which actually happens every 28 days) with the nurse practitioner overseeing this phase of treatment, and that triggers thoughts of an LJ update even though I'm not sure there's much to report. The good news is that I've recovered from the chemo more quickly in the last two rounds, regaining my appetite for real food within a few days of the last dose taken. This means that I've put about half the weight I lost back on, which is good. In the past week, I've walked four miles on four different days. It exhausted me the first two times, but it was better the second two. Yesterday I had the time I spent in the medical center to rest from the first two miles of the walk, so that helped.
I'm "getting used to" the Optune. I put that in quotes because it's an ongoing process that I'm still uncertain about. After one experiment, I've stopped wearing the actual device in public, although I leave the transducer arrays on my head, hidden as much as possible under a hat. I had gotten two more wall cords to use when I'm at the computer or watching TV upstairs, but when I got my usage stats read last week, Mary warned me that I might be turning it on and off too much, which I decided I was doing when I got up to get a cup of coffee or to urinate, or the zillion other little things you want to do when you think you're sitting in one place for eternity. ("Oops, left the phone over on the nightstand!") So I'm back to using batteries during the day when I need to move around the house more, and just plugging into the wall at night.
I've also gotten permission from my treatment team to leave the Optune behind when I travel. I actually took it with me when I went to Portland for Father's Day last weekend, so I could at least plug it in at night. However, when I go to Canada for two weeks next month, I'll be taking the transducer arrays off and leaving everything behind. Part of the problem for an extended trip like that is that the transducer arrays have to be changed twice a week, and that requires a person who has been trained how to put them on. Denys does it here at home, but he's the only person in my life right now who knows how to do it. Eventually my sister is going to learn how, because Denys is going to be traveling himself later in the year and I'm hoping to spend a week with the family in Central Oregon in August.
I got permission to leave it behind when I travel, but obviously the less I use it the less good I get from it. Carrie, the nurse practitioner, said one of the reasons they're willing to let me take long breaks is that it's not the only treatment I'm undergoing right now. There's always the chemo too. I suppose my usage data and ultimate outcome will help them learn more about the device and what kinds of patterns of usage produce what results. One problem with brain cancer is they can't really monitor what's going on with the cancer cells except through looking for aggregates/tumors using the MRI.
Anyway, aside from treatment, my life has been full of visitations. ron_drummond spent a week here before his mother's memorial on the Oregon Coast. The Fishlifters came out for a week following Corflu in May. It's a little bit strange to see friends who are worried that they may not get a chance to see me again, but I remind myself that they're looking at the worst case scenario, where I only survive the average survival time of fourteen months. If things turn out more favorably for me, which seems likely at this point (knock wood! I actually had a dream in which I angrily warned myself not to get cocky about this), I'll see all these friends again, hopefully more than once.
In Portland last weekend I drank beer with Dan and Lynn Steffan, and I had coffee with my old college friend (and housemate), Carl Lesher, and his fiance, Cari. Their wedding is in July, and I hope to make it to that. I'm so happy for Carl, especially since I had a very favorable impression of Cari, whom I apparently last met, very briefly, at my old girlfriend Molly's wedding back in the '80s. In the meantime I'll be going to Canada to see Sharee for a couple of weeks in the first half of July. We'll be bopping around Vancouver Island in a rented RV for the first week, then we'll rent a car to drive to Edmonton to visit her brother, niece, great nephew, and maybe her aunt who lives on Mt Robson along the way. I haven't seen Sharee in seven years, so this will be something particularly special. It's always an adventure to hang out with Sharee.
So this latest phase of treatment has become more routine, and I'm still managing to live my life in the nooks and crannies of recovery. My abilities, both physical and mental are diminished, but at least I'm having some fun, by gum. Well, in between the bureaucratic paperwork anyway. (The latest is an application for SSDI.)
I'm "getting used to" the Optune. I put that in quotes because it's an ongoing process that I'm still uncertain about. After one experiment, I've stopped wearing the actual device in public, although I leave the transducer arrays on my head, hidden as much as possible under a hat. I had gotten two more wall cords to use when I'm at the computer or watching TV upstairs, but when I got my usage stats read last week, Mary warned me that I might be turning it on and off too much, which I decided I was doing when I got up to get a cup of coffee or to urinate, or the zillion other little things you want to do when you think you're sitting in one place for eternity. ("Oops, left the phone over on the nightstand!") So I'm back to using batteries during the day when I need to move around the house more, and just plugging into the wall at night.
I've also gotten permission from my treatment team to leave the Optune behind when I travel. I actually took it with me when I went to Portland for Father's Day last weekend, so I could at least plug it in at night. However, when I go to Canada for two weeks next month, I'll be taking the transducer arrays off and leaving everything behind. Part of the problem for an extended trip like that is that the transducer arrays have to be changed twice a week, and that requires a person who has been trained how to put them on. Denys does it here at home, but he's the only person in my life right now who knows how to do it. Eventually my sister is going to learn how, because Denys is going to be traveling himself later in the year and I'm hoping to spend a week with the family in Central Oregon in August.
I got permission to leave it behind when I travel, but obviously the less I use it the less good I get from it. Carrie, the nurse practitioner, said one of the reasons they're willing to let me take long breaks is that it's not the only treatment I'm undergoing right now. There's always the chemo too. I suppose my usage data and ultimate outcome will help them learn more about the device and what kinds of patterns of usage produce what results. One problem with brain cancer is they can't really monitor what's going on with the cancer cells except through looking for aggregates/tumors using the MRI.
Anyway, aside from treatment, my life has been full of visitations. ron_drummond spent a week here before his mother's memorial on the Oregon Coast. The Fishlifters came out for a week following Corflu in May. It's a little bit strange to see friends who are worried that they may not get a chance to see me again, but I remind myself that they're looking at the worst case scenario, where I only survive the average survival time of fourteen months. If things turn out more favorably for me, which seems likely at this point (knock wood! I actually had a dream in which I angrily warned myself not to get cocky about this), I'll see all these friends again, hopefully more than once.
In Portland last weekend I drank beer with Dan and Lynn Steffan, and I had coffee with my old college friend (and housemate), Carl Lesher, and his fiance, Cari. Their wedding is in July, and I hope to make it to that. I'm so happy for Carl, especially since I had a very favorable impression of Cari, whom I apparently last met, very briefly, at my old girlfriend Molly's wedding back in the '80s. In the meantime I'll be going to Canada to see Sharee for a couple of weeks in the first half of July. We'll be bopping around Vancouver Island in a rented RV for the first week, then we'll rent a car to drive to Edmonton to visit her brother, niece, great nephew, and maybe her aunt who lives on Mt Robson along the way. I haven't seen Sharee in seven years, so this will be something particularly special. It's always an adventure to hang out with Sharee.
So this latest phase of treatment has become more routine, and I'm still managing to live my life in the nooks and crannies of recovery. My abilities, both physical and mental are diminished, but at least I'm having some fun, by gum. Well, in between the bureaucratic paperwork anyway. (The latest is an application for SSDI.)