Posted by Becky
It continues to look like the bendamustine and revelimid got a response; Leif's chest xray from yesterday shows no additional fluid accumulation around his lungs, and it seems to me that the swelling in his legs is less than it was, although it's still significant. Now we are basically going to sit around and wait while he adjusts to lower steroid doses, and his platelet count comes back up. That will take an undetermined number of days; different chemo regimens suppress bone marrow for different amounts of time, and of course Leif's bone marrow has taken a beating. He'll have to hang out in the hospital until his pain is under control by oral medication, and presumably until he doesn't need quite so many transfusions every day, and is done with the IV antibiotics.
Leif's pain level is still high, but not as bad as it was yesterday. Dr. Connelly says that it is likely due to coming off the steroids, which had been preventing him from feeling the pain so much. She increased his painkiller dose, but also says that his pain should lessen as the chemotherapy continues to take effect. He's been sleeping since he finished taking his pills this morning. He's getting two units of platelets and two of blood today, so he'll be hooked up to an IV all day anyway.
Because his painkiller is on a PCA, and blood products can't go through the same line as anything else, he had to have an IV put in his arm this morning for the painkillers, while the blood goes into his port. He's not thrilled about that, but you've gotta do what you've gotta do.
I was up late last night keeping an eye on Leif's respiration - he was doped up and loopy, and the nurses were worried. If his respiration dropped too low, they would need to give him medication that would drop all the painkillers out of his body at once. Ouch. At about 3 AM, one of his narcotics wore off and he seemed to be just asleep, as opposed to knocked out, so I was able to get some sleep at that point. I'm going to try to take a nap now.
It continues to look like the bendamustine and revelimid got a response; Leif's chest xray from yesterday shows no additional fluid accumulation around his lungs, and it seems to me that the swelling in his legs is less than it was, although it's still significant. Now we are basically going to sit around and wait while he adjusts to lower steroid doses, and his platelet count comes back up. That will take an undetermined number of days; different chemo regimens suppress bone marrow for different amounts of time, and of course Leif's bone marrow has taken a beating. He'll have to hang out in the hospital until his pain is under control by oral medication, and presumably until he doesn't need quite so many transfusions every day, and is done with the IV antibiotics.
Leif's pain level is still high, but not as bad as it was yesterday. Dr. Connelly says that it is likely due to coming off the steroids, which had been preventing him from feeling the pain so much. She increased his painkiller dose, but also says that his pain should lessen as the chemotherapy continues to take effect. He's been sleeping since he finished taking his pills this morning. He's getting two units of platelets and two of blood today, so he'll be hooked up to an IV all day anyway.
Because his painkiller is on a PCA, and blood products can't go through the same line as anything else, he had to have an IV put in his arm this morning for the painkillers, while the blood goes into his port. He's not thrilled about that, but you've gotta do what you've gotta do.
I was up late last night keeping an eye on Leif's respiration - he was doped up and loopy, and the nurses were worried. If his respiration dropped too low, they would need to give him medication that would drop all the painkillers out of his body at once. Ouch. At about 3 AM, one of his narcotics wore off and he seemed to be just asleep, as opposed to knocked out, so I was able to get some sleep at that point. I'm going to try to take a nap now.
Love, love and more love. And peace. I wish there were more to say. Thank you so much for the updates. Crying with you, hope that chemo kicks the shit outta this stuff soon so pain relief comes. ((hugs))
ReplyDeleteSending all my love from way down here, too. Wish I could do more. Anything I can send you guys? Anything at all? For either one of you?
ReplyDeleteHere's hoping the chemo does its job and things more.
I'm going to try to make it to a meeting today to decide for sure if I want to do the half marathon fundraiser for the Leukemia and Lymphoma Society (I'm picky about where I ask folks to donate, so I like to do my homework - seems like an okay group so far?) I figure it's the least I can do for you guys. Never done anything like that, but I want to help in any way I can, so...yeah, I think I'm going to try it.
Massive hugs from Texas!
The Leukemia and Lymphoma Society has been good to us. They have provided finanical help with Leif's copays, and they also fund research.
DeleteThat's good enough for me! Team in Training, here I come! Leif-when I think of you, I think of your piranhamoose shirt (amongst other things). I do believe that shall be my race mascot, at least mentally. You good with that? :)
Delete*things IMPROVE more. Stupid brain.
ReplyDeleteLeukemia and Lymphoma Society is a good one. My friends Robin and Karin have run or skated in honor of their mom for many years.
ReplyDeleteGood to know, Wendy! I researched the amount of funds they actually put toward their cause and such and it seems that way, but was still on the fence. I've never done a half marathon before! I'm far less intimidated by a triathlon, as I've done short ones of those, but none work for me. I really think I'm going to do it! I couldn't make the meeting after all, but it looks like you can do everything online. I want to do something to help, and this is the thing I can do. So, 13.1 miles here I come!
Delete