Going to be kinda scatter brained post, just going to give a little synopsys and then paste some texts from today how i’m doing.Got on the 20th and they did a blood test and once that came back, started chemo in regular outpatient room and 3 or 4 hours moved me to my room ’cause it wasn’t ready previously.
Both my ports on my hickman were in use for the chemo and my port was in use as well for other drugs and blood drays and stuff. Got chemo for in both ports for like 4 and a half days straight about. Nausea was pretty bad and food tasted terrible, obviously way worse than regular chemo but it was managed decently so overall not actually much worse I think… May be sugar coating it in memory. Mouth and throat got worse during chemo and is now the main problem I have, more on that later. Had Mesna for kidney protection and other drugs like that. 6th day I had stem cell infusion, and felt a tiny bit better chemo wise, throat was still as bad but it’s supposed to take 10-14 days to start feeling better.
I was still taking the same amount of morphine but not taking breakthrough ’cause it was liquid that I gag and cough on. They switched to pills and it helped some but not enough and the time delay of getting them was the bigger problem (worst case is 10mins for alert desk to reply, 10-15mins to come see what I want, hen 10-15mins to get it. Some times total of 5mins to get stuff, so super inconsistant). Morning was rough and got them to switch me to liquid that I can control the breakthrough doses every 10mins .7ml. This worked better for the first day but they said it’d get worse the day after and it did but they didn’t up the continual level, even though I said they’d need to and the doc said they would talk about it with the other doctors but didn’t happen. So by 7pm I was in a lot of pain, and couldn’t catch up with break through even if every 10mins consecutive. Got the nurse to call the doc on call and he upped it to 2.0ml from 1.5ml, it wasn’t enough still but if I hit the breakthrough dose every 10mins for at least three times, maybe more. I left the light on so it would wake me up every hour or two and I could hit the button and get a boost so I didn’t get brhind and feel terrible. Earlier today I explained what happened to the doctor and she upped it to 3.0 at like 8am. Helped a lot more, and slept most of the day on and off. At about 1pm or something another doc came in to talk to me as whether 3.0 was enough. He was willing to up it to 3.5, which was good, could probably even use more but it was god most of the day, probably use more now but guess i’ll talk to them tomorrow morning. Definitely need more in the coming days, days +5 and +6 are the worst apparently (today was +3, they count them as the days after infusion day). Also had a fever 100.5-102.3 half the time or 2/3 the time and 98.x-99.x the rest.
Oh, don’t know if I said, my throat and mouth are the big problem, and will be what get’s worse before it gets better. feeling bad overall too kinda partly from fever.
I think the fact that you’re counting the minutes it takes before they’re able to provide yet another infusion of drugs, helps underscore just how much agony you’re in.
Besides this, what are you doing for distractions… or is it so bad that you’re just hoping to get some sleep most of the time ?
Stay strong…