Wait What?
I mentioned in Saturday's entry that the next attempt to collect stem cells from Lut would be "three times as bad as the previous attempts."
The schedule for it started today, with seven hours of chemotherapy at the clinic. Then he'd be sent home with another IV hooked up to him, and I'd bring him back Thursday to have that unhooked. Then he'd get shots starting on Sunday morning and every day for the next nine days.
The consent-to-treatment meeting with the doctor was also this morning. I dropped Lut off at the clinic and went to work, with the plan to pick him up after the chemo was done.
Five minutes after work, I got a call from Lut. "You need to be part of the consent meeting," he said.
Then the doctor came on the line: "What are you doing at work? He's going to need 24/7 care after having the chemo, today for three to four weeks."
Me: "What?"
Doctor: "This is the same kind of chemotherapy that we use before the transplant. It's a weaker form; if the transplant uses a 10, this is a 6 or 7. But he'll still need 24/7 care! You can't be leaving him alone to go to work!"
Me: "... literally no one mentioned anything about this to me."
Doctor: *lectures me some more about how I can't leave Lut alone and what am I thinking and if I'm going to got TO WORK they can't do this treatment*
Me: "I need to talk my boss. I will call you back."
Doctor: "All right, well, we'll cancel the treatment for today -- "
Me: "LOOK I WILL CALL YOU RIGHT BACK GIVE ME FIFTEEN MINUTES."
Doctor: "All right."
Not only had no one told me that Lut was going to need 24/7 care, but the nurse-coordinator had specifically consulted me about what times would be most convenient for me WITH MY WORK SCHEDULE. So I am pretty sure the doctor was the only one who knew what was involved and had not successfully communicated it to anyone else. x_x
So I called my boss and didn't reach her, emailed her, called again, got her, and poured out my tale of woe. "So I need to take 3-4 weeks off STARTING THIS AFTERNOON, and then another two weeks sometime afterwards if all goes WELL."
Boss: "Omigosh TODAY?"
Me: "YES. They JUST TOLD ME."
Boss: "Well, okay, you better do that then. Let me know what you've got going on and we'll get it covered."
So my boss is basically a saint. ♥
I called the clinic back and they started the treatment. Which I didn't need to be there for, so I'm not sure why the doctor was so put out that I wasn't, but whatever. If he gets Lut's cancer into remission I can forgive the lousy communication.
Our manager called shortly after I got off the phone with my boss, to give me moral support and let me know that she was also 100% supportive about me needing the time off.
Then I spent the next six hours at work frantically trying to wrap up the things that were important, and that I was in the middle of, and where I have some advantage over the rest of my team in experience/know-how.
I actually did pretty well at this! I was pleased. I wrapped up the last report just when the nurse called to say that Lut would be ready for pick-up soon. I dashed off some emails and turned my out-of-office on and then went to collect Lut and a pile of new medications and instructions.
As of this afternoon, I am on leave from work, which is a weird feeling. I still have to get up early every day and take Lut to the clinic, but those appointments are short. I can't go to the coffee shop to write, though, because the reason I am off work is so I can be here for Lut. I may try to make Pretend Coffee Shop in my living room, where I go there to write on my laptop and have a Coke float. Otherwise, I'm afraid it'll be video games at my desktop whenever I'm not actively checking on Lut. I am not required to hover over him, vulture-like. It is assumed that the caregiver will sleep at the same time the patient does, for example. So I expect to be keeping an eye on him, but also that I'll have a lot of time when I can do whatever I want except for leave the house. Lut is under orders not to leave the house except to go to the clinic, too. His immune system is compromised by the chemo. He can't even have food from a restaurant! Very sad. :(
Lut is doing okay-ish so far. This chemo is much more like what you think about when you hear "chemo", so he has nausea and weird pains and he will lose his hair in the next week or so. It's not too bad yet, but the worst hits in the next day or two.
The odds of a successful transplant at this stage are not super-great. If they can't collect stem cells from him even with this, then he will go back to his previous oncologist and we'll manage it with less dramatic kinds of chemo and hope for the best. It's not an instant death sentence by any means, but the chemo-alone route is unlikely to get Lut into remission. Prayers and good thoughts are much appreciated.
This entry was originally posted at https://rowyn.dreamwidth.org/624196.html. Please comment there using OpenID.
The schedule for it started today, with seven hours of chemotherapy at the clinic. Then he'd be sent home with another IV hooked up to him, and I'd bring him back Thursday to have that unhooked. Then he'd get shots starting on Sunday morning and every day for the next nine days.
The consent-to-treatment meeting with the doctor was also this morning. I dropped Lut off at the clinic and went to work, with the plan to pick him up after the chemo was done.
Five minutes after work, I got a call from Lut. "You need to be part of the consent meeting," he said.
Then the doctor came on the line: "What are you doing at work? He's going to need 24/7 care after having the chemo, today for three to four weeks."
Me: "What?"
Doctor: "This is the same kind of chemotherapy that we use before the transplant. It's a weaker form; if the transplant uses a 10, this is a 6 or 7. But he'll still need 24/7 care! You can't be leaving him alone to go to work!"
Me: "... literally no one mentioned anything about this to me."
Doctor: *lectures me some more about how I can't leave Lut alone and what am I thinking and if I'm going to got TO WORK they can't do this treatment*
Me: "I need to talk my boss. I will call you back."
Doctor: "All right, well, we'll cancel the treatment for today -- "
Me: "LOOK I WILL CALL YOU RIGHT BACK GIVE ME FIFTEEN MINUTES."
Doctor: "All right."
Not only had no one told me that Lut was going to need 24/7 care, but the nurse-coordinator had specifically consulted me about what times would be most convenient for me WITH MY WORK SCHEDULE. So I am pretty sure the doctor was the only one who knew what was involved and had not successfully communicated it to anyone else. x_x
So I called my boss and didn't reach her, emailed her, called again, got her, and poured out my tale of woe. "So I need to take 3-4 weeks off STARTING THIS AFTERNOON, and then another two weeks sometime afterwards if all goes WELL."
Boss: "Omigosh TODAY?"
Me: "YES. They JUST TOLD ME."
Boss: "Well, okay, you better do that then. Let me know what you've got going on and we'll get it covered."
So my boss is basically a saint. ♥
I called the clinic back and they started the treatment. Which I didn't need to be there for, so I'm not sure why the doctor was so put out that I wasn't, but whatever. If he gets Lut's cancer into remission I can forgive the lousy communication.
Our manager called shortly after I got off the phone with my boss, to give me moral support and let me know that she was also 100% supportive about me needing the time off.
Then I spent the next six hours at work frantically trying to wrap up the things that were important, and that I was in the middle of, and where I have some advantage over the rest of my team in experience/know-how.
I actually did pretty well at this! I was pleased. I wrapped up the last report just when the nurse called to say that Lut would be ready for pick-up soon. I dashed off some emails and turned my out-of-office on and then went to collect Lut and a pile of new medications and instructions.
As of this afternoon, I am on leave from work, which is a weird feeling. I still have to get up early every day and take Lut to the clinic, but those appointments are short. I can't go to the coffee shop to write, though, because the reason I am off work is so I can be here for Lut. I may try to make Pretend Coffee Shop in my living room, where I go there to write on my laptop and have a Coke float. Otherwise, I'm afraid it'll be video games at my desktop whenever I'm not actively checking on Lut. I am not required to hover over him, vulture-like. It is assumed that the caregiver will sleep at the same time the patient does, for example. So I expect to be keeping an eye on him, but also that I'll have a lot of time when I can do whatever I want except for leave the house. Lut is under orders not to leave the house except to go to the clinic, too. His immune system is compromised by the chemo. He can't even have food from a restaurant! Very sad. :(
Lut is doing okay-ish so far. This chemo is much more like what you think about when you hear "chemo", so he has nausea and weird pains and he will lose his hair in the next week or so. It's not too bad yet, but the worst hits in the next day or two.
The odds of a successful transplant at this stage are not super-great. If they can't collect stem cells from him even with this, then he will go back to his previous oncologist and we'll manage it with less dramatic kinds of chemo and hope for the best. It's not an instant death sentence by any means, but the chemo-alone route is unlikely to get Lut into remission. Prayers and good thoughts are much appreciated.
This entry was originally posted at https://rowyn.dreamwidth.org/624196.html. Please comment there using OpenID.