I got through my Rituxan yesterday, as Becky said. I am unhooked from all the pumps and fluids, which is so nice. I went for a couple of walks today to celebrate. The walks are tiring, but the exercise is good, and I need to get out of this little room once in a while. I think that space travelers are going to have much more difficult psychological problems than most people think. I know that nuclear subs stay down for months at a time, but frankly, they are huge compared to anything I can imagine putting up in a space capsule.
I have been in the hospital for 3 weeks on Sunday, and I am looking at least another 3 weeks, and possibly many, many more. I have to wait for my neutrophils come back up to a reasonable level, because infection is the most dangerous part of the treatment. I have another Rituxan session coming up, but I have not looked to see when, exactly it will be. Sometimes it is better to just go along day by day. After all, it is not like a Rituxan day is something to look forward to.
This last chemo treatment has done good things though, my spleen is the smallest it has been since I went in to the hospital back in May. The doctors are hoping that with another series of this treatment, I might go into remission and be able to harvest my stem cells for use. This would be great. Donor stem cells are pretty dangerous (because the donated white blood cells are in a foreign environment and can perceive everything as a possible source of infection). My own stem cells would produce white blood cells that recognize my antibodies and proteins.
So, there is a lot to stay upbeat for, even though each treatment is psychologically harder. No one likes to be poisoned, and I am currently on something like 37 different medicines, many of which come at different times, so I have been woken constantly during the night every 2 to 4 hours for the past 2 weeks or so. It is tiring in a way that is hard to describe. Some of the medicines, too, have emotional effects, and I have been a little weepy for no good reasons. Sure the chemo is hard, and the room is tiny, but other people get through this fine, and I am stubborn as hell, so I can't see that I am going to be taken down by some single-celled organism. Life is still amazing.
I have been thinking about my friends, and while I wish that I could see them, there are a few things to consider. One is that it is a long haul from Belfast to Dartmouth, and that I do not have the energy for more than a couple hours of visits. Another part of that is that because I am tired so much, I can not hang out with too many people at a time. Two people or so is pretty much all that I can handle, before I get overwhelmed. The third part is that I am neutropenic, and have to be careful of infection. Becky and I were thinking that if people wanted to road-trip out to see me at some point, the thing to do would be to see me for a while, and then hang out with Becky at her rental, and then perhaps see me again in the morning before you leave.
I do enjoy phone calls, and my number here is (603) 650-2106. If I am asleep, or wiped out, I simply don't answer the phone, but I am usually up to a conversation in the late afternoon.
I have been in the hospital for 3 weeks on Sunday, and I am looking at least another 3 weeks, and possibly many, many more. I have to wait for my neutrophils come back up to a reasonable level, because infection is the most dangerous part of the treatment. I have another Rituxan session coming up, but I have not looked to see when, exactly it will be. Sometimes it is better to just go along day by day. After all, it is not like a Rituxan day is something to look forward to.
This last chemo treatment has done good things though, my spleen is the smallest it has been since I went in to the hospital back in May. The doctors are hoping that with another series of this treatment, I might go into remission and be able to harvest my stem cells for use. This would be great. Donor stem cells are pretty dangerous (because the donated white blood cells are in a foreign environment and can perceive everything as a possible source of infection). My own stem cells would produce white blood cells that recognize my antibodies and proteins.
So, there is a lot to stay upbeat for, even though each treatment is psychologically harder. No one likes to be poisoned, and I am currently on something like 37 different medicines, many of which come at different times, so I have been woken constantly during the night every 2 to 4 hours for the past 2 weeks or so. It is tiring in a way that is hard to describe. Some of the medicines, too, have emotional effects, and I have been a little weepy for no good reasons. Sure the chemo is hard, and the room is tiny, but other people get through this fine, and I am stubborn as hell, so I can't see that I am going to be taken down by some single-celled organism. Life is still amazing.
I have been thinking about my friends, and while I wish that I could see them, there are a few things to consider. One is that it is a long haul from Belfast to Dartmouth, and that I do not have the energy for more than a couple hours of visits. Another part of that is that because I am tired so much, I can not hang out with too many people at a time. Two people or so is pretty much all that I can handle, before I get overwhelmed. The third part is that I am neutropenic, and have to be careful of infection. Becky and I were thinking that if people wanted to road-trip out to see me at some point, the thing to do would be to see me for a while, and then hang out with Becky at her rental, and then perhaps see me again in the morning before you leave.
I do enjoy phone calls, and my number here is (603) 650-2106. If I am asleep, or wiped out, I simply don't answer the phone, but I am usually up to a conversation in the late afternoon.
thanks for these updates. so glad you were able to get out for a bit, unhooked. I cannot imagine what this prolonged hospitalization and the constantly disrupted sleep is like to be living with on a daily, and nightly basis. stubborn as hell - thank god for it!
ReplyDelete- Bethany
I can not even tell you how nice it is to be unhooked from the tubes. That helps my mental health so much (when I remember to take advantage of it - I have been hooked in so much that I forget that I am not constantly hooked up.)
DeleteI am glad that I did triphasic sleeping last year, and got used to short naps and falling right back to sleep. It has been a great help. Right now, I mostly sleep whenever - 2 hour cat naps during the night and day. The nurses are pretty good about trying not to wake you, but I like to put the lights on whenever they come into the room. I want them to be able to see what they are doing!
I know what you mean about wanting the lights on for the nurses. On my own (thankfully short) overnight hospital stays I felt the same way. I knew they were just being considerate trying not to wake me (or at least get me more awake than necessary), but egads, I want them to SEE what they're doing!
DeleteYour point about the confinement of spaceflight is a good one. I want to gi to Mars in a BIG ship. That's what I found attractive about the Orion concept. OK, so you have 1000 atom bombs going off under you, but on the other hand you also have a ship the size & weight of a Navy destroyer.
Yeah, If I am ever going to Mars, I want it to be on something the size of a cruise ship, or something that can pull 1g for the entire trip (turning around at the halfway point of course). I can put up with a small cabin for 4 days.
DeleteThe Orion concept always sounded good to me, the 1k atomic bombs seems like a non-issue. It is not like you are going to damage space by irradiating it. I wouldn't say no to extra shielding anyway, what with flairs and general cosmic radiation.
In Red mars, the Ares was conventionally propulsioned, and took about 6 months. I think I could handle that on a large ship with 100 other people. So, when do you think we are going to get to go?
Well I hate to admit it, but my fusion-powered Mars rocket is a bit behind schedule. When I was a pre-teen I figured it was going to be about 20 to 30 years. Not long after commercial fusion power plants, flying cars and video phones became common. So now the world has one out of three, and I'm a bit behind that curve. My current estimate is another 20 to 30 years ;-/ You're definitely invited along for the ride, although at this point I can't make any promises about the exact itinerary!
DeleteThere's just something about the term, "neutropenia". Sounds kinda pornographic. Aren't you glad you have such an awesome vocabulary. We rednecks just have to make it up as we go....
ReplyDelete