Another Bleo day, should be a quick one like last time. They give you fluids/premeds which takes an hour or so then the bleo which is only 15-20 minutes. It isn't until 2:30 today though so my tiredness that usually comes mid day from it, when I get it in the morning, should just mean I get a good nights sleep. I do have a couple of skin reactions I want to talk to the nurse about which could be unrelated but just to be safe. I will update later in the day after the Bleo to tell you all how my blood counts are (they do blood on the bleo days for WBC/RBC/HGB) etc.
[RATING SYSTEM]
- So I was omitting the rating system from these posts, sorry that was my bad. The reason was because I actually "feel" perfectly fine. I am the slightest bit tired, but honestly it could be from anything totally unrelated to the chemo which is why I wasn't posting anything with these but to be consistent (Thanks Dane for pointing it out) I will keep them on my posts.
3:00pm O:0 P:0 N:0 T:1
STILL waiting to even go in, my company changed our insurance pretty significantly this year and it seems to be causing some issues. Fun times. Ok so our insurance officially sucks. Our HSAs aren't active yet and everything is "out of pocket" for the first $3,500 so Urgh. They went ahead and let me through for my treatment today but it cost $350 just for today. I have several doctors.appointments and many many chemo treatments left. Gonna have to call my company and find out how to handle this. I don't have 3.5k just lying around hahahaha
4:35pm O:0 P:0 N:0 T:1
Well crap. Got my blood work back. My counts have all tanked. They are surprised I feel so good. Gonna have to do those shots that make your bones hurt, no fun. I feel fine though!
5:15pm O:0 P:0 N:0 T:1
So I have my numbers. WBC 1000! wow freaking crazy drop from last time it was over 7000 last week. HGB is down from 16.7 last week to 13.3, not bad but certainly dropped a bit. RBC was fine, thankfully.. but my platlets where down to 80k which is quite low last week they were 155k which was on the low end of "normal". And my Neutrophils are at freaking 100!!!!! Normal is 1800->7800 so yeah... um CRAP. Just got my first shot of Neulasta, hopefully the bone ache/pain isn't bad from it and I have to do one every day for 7 days =(. My insurance picked a bad time to screw me over money wise, this is gonna suck.
5:30pm O:0 P:0 N:0 T:1
And the hits keep on coming, aaaaaaahhh. So this whole time I thought the schedule was Week 1 (5 days ) Week 2 (1 day) Week 3 (1 day) Week 4 (off). That's to say 3 weeks worth of treatment and then an "off" week. I dont know where I got that from, if I inferred it from things I read online or if I got that impression from the Dr. or what but... yeah I was totally wrong. There is no such thing as an "off" week, which means.. next week is ANOTHER HELL WEEK! So, I guess plus side is I will get through the rounds faster... but I was just starting to feel good again and I know next week is gonna destroy me, especially with how my blood work came out today. Well, on the plus side I will have a week to recover before our move-in week and maybe I won't feel like crap? :-P Searching for good things to be thankful for here HAHAHA.
------------ JUST REALIZED SOMETHING ------------
BEP Round 1 is DONE! That's it, all doses taken. Bleo didn't even really tire me out this time I feel fine. On to round 2! A few things I am going to do different for this round:
1) Eat better. Previously I pretty much just ate "whatever sounded good" and honestly it wasn't the best food for me. Often after I ate it I would feel worse or my stomach would fight me etc. This time I am going to try and eat more "balanced". Not really healthy per se, just better all around nutrition to try and not lose ~10lbs this time and to try and keep my energy up because I know by Thursday I will be hurting again.
2) Mouthwash and Brushing my teeth, I didn't do a great job of that last time. I did it a few times a day and tried to be diligent but it wasn't a priority and I was borderline on getting some bad sores. Luckily we caught it before it got to bad and were able to keep it under control but I don't want to go down that route again.
3) If possible, if I am up to it, I want to try and be a bit more active at least for an hour a day or so.. I felt like last time I mostly sat around... slept.. and was basically a bump on a pickle. While that rest was good for me it also was super boring and kinda crappy just laying around all day. Maybe something active walking around the block with the dog or something just to get up and out.
4) Water, water, water... I did actually a pretty good job of hydration this time but I think I could do better. Honestly I should be drinking all day. I probably drank a few liters of water a day maybe more but usually in bursts. If I could try and just be slowly drinking throughout the day and increase my overall water intake I think it would help also with the tiredness flushing that crud out of my system after a treatment.
5) The last one is minor but, LOTS OF PAIN CREME on my port. I did that today ~1.5 hours before (because the insurance crap took so long) and I didn't even feel her hook me up with the needle through my chest HA.
[RATING SYSTEM]
- So I was omitting the rating system from these posts, sorry that was my bad. The reason was because I actually "feel" perfectly fine. I am the slightest bit tired, but honestly it could be from anything totally unrelated to the chemo which is why I wasn't posting anything with these but to be consistent (Thanks Dane for pointing it out) I will keep them on my posts.
3:00pm O:0 P:0 N:0 T:1
STILL waiting to even go in, my company changed our insurance pretty significantly this year and it seems to be causing some issues. Fun times. Ok so our insurance officially sucks. Our HSAs aren't active yet and everything is "out of pocket" for the first $3,500 so Urgh. They went ahead and let me through for my treatment today but it cost $350 just for today. I have several doctors.appointments and many many chemo treatments left. Gonna have to call my company and find out how to handle this. I don't have 3.5k just lying around hahahaha
4:35pm O:0 P:0 N:0 T:1
Well crap. Got my blood work back. My counts have all tanked. They are surprised I feel so good. Gonna have to do those shots that make your bones hurt, no fun. I feel fine though!
5:15pm O:0 P:0 N:0 T:1
So I have my numbers. WBC 1000! wow freaking crazy drop from last time it was over 7000 last week. HGB is down from 16.7 last week to 13.3, not bad but certainly dropped a bit. RBC was fine, thankfully.. but my platlets where down to 80k which is quite low last week they were 155k which was on the low end of "normal". And my Neutrophils are at freaking 100!!!!! Normal is 1800->7800 so yeah... um CRAP. Just got my first shot of Neulasta, hopefully the bone ache/pain isn't bad from it and I have to do one every day for 7 days =(. My insurance picked a bad time to screw me over money wise, this is gonna suck.
5:30pm O:0 P:0 N:0 T:1
And the hits keep on coming, aaaaaaahhh. So this whole time I thought the schedule was Week 1 (5 days ) Week 2 (1 day) Week 3 (1 day) Week 4 (off). That's to say 3 weeks worth of treatment and then an "off" week. I dont know where I got that from, if I inferred it from things I read online or if I got that impression from the Dr. or what but... yeah I was totally wrong. There is no such thing as an "off" week, which means.. next week is ANOTHER HELL WEEK! So, I guess plus side is I will get through the rounds faster... but I was just starting to feel good again and I know next week is gonna destroy me, especially with how my blood work came out today. Well, on the plus side I will have a week to recover before our move-in week and maybe I won't feel like crap? :-P Searching for good things to be thankful for here HAHAHA.
------------ JUST REALIZED SOMETHING ------------
BEP Round 1 is DONE! That's it, all doses taken. Bleo didn't even really tire me out this time I feel fine. On to round 2! A few things I am going to do different for this round:
1) Eat better. Previously I pretty much just ate "whatever sounded good" and honestly it wasn't the best food for me. Often after I ate it I would feel worse or my stomach would fight me etc. This time I am going to try and eat more "balanced". Not really healthy per se, just better all around nutrition to try and not lose ~10lbs this time and to try and keep my energy up because I know by Thursday I will be hurting again.
2) Mouthwash and Brushing my teeth, I didn't do a great job of that last time. I did it a few times a day and tried to be diligent but it wasn't a priority and I was borderline on getting some bad sores. Luckily we caught it before it got to bad and were able to keep it under control but I don't want to go down that route again.
3) If possible, if I am up to it, I want to try and be a bit more active at least for an hour a day or so.. I felt like last time I mostly sat around... slept.. and was basically a bump on a pickle. While that rest was good for me it also was super boring and kinda crappy just laying around all day. Maybe something active walking around the block with the dog or something just to get up and out.
4) Water, water, water... I did actually a pretty good job of hydration this time but I think I could do better. Honestly I should be drinking all day. I probably drank a few liters of water a day maybe more but usually in bursts. If I could try and just be slowly drinking throughout the day and increase my overall water intake I think it would help also with the tiredness flushing that crud out of my system after a treatment.
5) The last one is minor but, LOTS OF PAIN CREME on my port. I did that today ~1.5 hours before (because the insurance crap took so long) and I didn't even feel her hook me up with the needle through my chest HA.
Mike,
ReplyDeleteSorry for the sh!tty news with your insurance. I start my BEP cycle tomorrow so thanks to you I know what I am walking into, or at least I think I do! What did you mean by "shots that make your bones hurt"? I was told I would be taking Leukine (sp) to increase the bone marrow growth, is that what you were referring to? Or should I expect my bones to ache as well?
I know it must suck to keep posting but your posts are so insightful, if at all possible, keep them coming. You really are helping those of us about to go through this. Any chance of also posting your grading system again? I am curious how you have been feeling in those departments.
I cannot even fathom having to move in the midst of all of this so good luck on that front and it sounds as though you have an amazing wife...
Cheers and happy thoughts your way!
Dane,
ReplyDeleteThanks for following! Well I have heard from another person who went through BEP I work with that those shots can cause some bone ache. The nurse told me it more like a "soreness" from a hard workout or something but we will see how it goes. As for "feeling good" honestly the last few days since probably Saturday I have felt basically normal... a bit easier to get tired but overall pretty good. Now, that's not what my blood work shows! HAHAHA, the nurses were shocked that I felt so good considering my #s however she said "Well you are still young, you got some strength in you" So I will take that as a compliment :-P
As for your treatment starting tomorrow good luck and let me know how it goes. Follow my tips, and stay on ALL your meds.. get rest etc and you should make it through the first round fine. How many are you doing 3? 4?
Mike