It is Friday night, tomorrow is Halloween and we are 4 days into Casey's first 5 day chemo cycle. I have taken notes throughout the past few days and it's amazing how almost every time we have gone in for a treatment something is different. You would think this would be pretty regimented and routine but it seems every nurse does stuff differently. It's actually pretty annoying. Sometimes they wear gowns, sometimes they don't. Sometimes they are very attentive and sometimes you see them only when your IV alarm is going off; either because the infusion is done or because there is "air in the line"- which means that you have to very scientifically flick the IV line so as to move the air bubbles through. Again- annoying!
A few things I want to suggest for those who haven't started chemo yet. Talk to your doctor before you begin about getting a port or a pick line put in first. Casey's arms are poked all over from getting a different IV everyday and he even broke out in a small localized rash due to some of the medical tape used to secure the IV. Getting a port ahead of time would enable the nurses to simply stick the IV into the port instead of having to re-shoot a vein every visit! No one mentioned this to us before we started so now Casey will be getting a port next week- the week after his chemo. Perfect.
Also, talk to your doctor about getting the seasonal flu shot and, if possible, the H1N1 shot. No one mentioned this to us and although the nurses say the seasonal flu shot is still OK to get the H1N1 is contraindicated while on chemo. It's just some info that would have been nice to know PRIOR to the 1st treatment.
Anyway, Casey is feeling OK at this point. He has had some mild nausea and his appetite is definitely waning. He has eaten things like bagels, turkey sandwiches and bananas but really nothing has sounded all that appetizing. He's been drinking tons of water (which is SO important) but food has been kind of a struggle. He describes his overall feeling as "meh"- kind of like how you feel right before you know you're coming down with the flu.
One last thing that I will say for tonight; make sure you or whoever is coming with you to your treatments is well versed in your meds and what your oncologist has ordered. Obviously they can go over them with you but make it a priority to learn the name of each med, the possible side effects and what is not normal. A few times we have needed to question what was being dosed as it seemed the nurses were not very sure what exactly the previous nurse had done. This is not to say we've had bad nurses as they have all been very sweet and helpful, but, you can pick out the best ones from the mediocre ones pretty quick! So far we have only been scheduled for treatments at 4:00PM so we have been at the hospital pretty late and I have to say that I think they put the newer nurses on at night because it's the crappy shift, and because it's a lot slower so they can take their time and learn. Great for them, not great for you. Especially when all you want to do is go home!
We were originally told that each chemo session would take about 2 hours. WRONG. We have not been at a session for shorter then 6 hours so far. There is always a hydration infusion to make sure you're getting plenty of liquids, then they do anti-emetics (nausea meds), then comes Etoposide, the Cisplatin (Etoposide and Cisplatin have been taking about 2 hours each) and then once a week they are doing Bleomycin (about 15-20 minutes) and then another bag of fluids! It's LONG and even though there is a TV, it's boring. I downloaded some trivia and word search games on my ipod touch which has helped pass the time but wow....it's a long time to sit in a room. Hell I'm not even the one getting pumped full of chemo!
I think that is all for now. I need to go to bed. I am taking my daughter to the chemo room tomorrow in her Halloween costume, she's going to be a monkey! Maybe that will cheer up some of the patients. I am also bringing chocolate chip cookie dough cupcakes. If the monkey doesn't work the cupcakes will!! Gotta stay positive! :)
A few things I want to suggest for those who haven't started chemo yet. Talk to your doctor before you begin about getting a port or a pick line put in first. Casey's arms are poked all over from getting a different IV everyday and he even broke out in a small localized rash due to some of the medical tape used to secure the IV. Getting a port ahead of time would enable the nurses to simply stick the IV into the port instead of having to re-shoot a vein every visit! No one mentioned this to us before we started so now Casey will be getting a port next week- the week after his chemo. Perfect.
Also, talk to your doctor about getting the seasonal flu shot and, if possible, the H1N1 shot. No one mentioned this to us and although the nurses say the seasonal flu shot is still OK to get the H1N1 is contraindicated while on chemo. It's just some info that would have been nice to know PRIOR to the 1st treatment.
Anyway, Casey is feeling OK at this point. He has had some mild nausea and his appetite is definitely waning. He has eaten things like bagels, turkey sandwiches and bananas but really nothing has sounded all that appetizing. He's been drinking tons of water (which is SO important) but food has been kind of a struggle. He describes his overall feeling as "meh"- kind of like how you feel right before you know you're coming down with the flu.
One last thing that I will say for tonight; make sure you or whoever is coming with you to your treatments is well versed in your meds and what your oncologist has ordered. Obviously they can go over them with you but make it a priority to learn the name of each med, the possible side effects and what is not normal. A few times we have needed to question what was being dosed as it seemed the nurses were not very sure what exactly the previous nurse had done. This is not to say we've had bad nurses as they have all been very sweet and helpful, but, you can pick out the best ones from the mediocre ones pretty quick! So far we have only been scheduled for treatments at 4:00PM so we have been at the hospital pretty late and I have to say that I think they put the newer nurses on at night because it's the crappy shift, and because it's a lot slower so they can take their time and learn. Great for them, not great for you. Especially when all you want to do is go home!
We were originally told that each chemo session would take about 2 hours. WRONG. We have not been at a session for shorter then 6 hours so far. There is always a hydration infusion to make sure you're getting plenty of liquids, then they do anti-emetics (nausea meds), then comes Etoposide, the Cisplatin (Etoposide and Cisplatin have been taking about 2 hours each) and then once a week they are doing Bleomycin (about 15-20 minutes) and then another bag of fluids! It's LONG and even though there is a TV, it's boring. I downloaded some trivia and word search games on my ipod touch which has helped pass the time but wow....it's a long time to sit in a room. Hell I'm not even the one getting pumped full of chemo!
I think that is all for now. I need to go to bed. I am taking my daughter to the chemo room tomorrow in her Halloween costume, she's going to be a monkey! Maybe that will cheer up some of the patients. I am also bringing chocolate chip cookie dough cupcakes. If the monkey doesn't work the cupcakes will!! Gotta stay positive! :)
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