what a day.... 
anyway I got to UMC on time and called into the back by 8:55 ish ( huge thanks to Gary for getting me there in a timely manner) and then back into the waiting room for 9:05 or so... waited a bit longer and then called back to the chemo room. Once back there, I found out that this batch had 5 different steps to complete and will take " most of the day". Gary and I contemplated the time constraints and we decided it would be best for Gary to head on home and get some sleep... called the wifey to make sure she is able to pick me up. and she was. got home around 6:30pm. No one told me it was going to take nearly 11 hrs to get his done
got the first dose of the "every 3 weeks" stuff, had a reaction to the 3rd product, eyeballs went super dry and itchy within moments of opening the valve on the IV ( it was like having fine sand thrown into my eyes)
they administered the proper "antidote" and stopped dosing me with the suspect product ( I think it was called Praxil?)
oohhh BTW, I did some more research on Oxy Codone and found out that the "life span / active working time" is an average of 4 hrs, so for some "odd reason" it matches my results too , but yet they want to go for 8 hr interval knowing all too well it is 4 hrs 
While I was there, my 7:00 am dose wore off at about 11:00 am and had a full blown pain spike ( poor Gary had to see this happen)... luckily I remembered that I had brought along 2 @ 7.5s Oxy with me, took those and within 30ish minutes I was able to be composed enuf to resume the session. The nurse asked me if I took the Oxy and I said yes ( she thought I had taken 1, I took 2 of them since it was an hard attack) a few minutes later she asked if I took a morphine earlier, said no to question and she went unprofessional on me, and somewhere also she specifically asked me how many Oxys I took, told her 2 @7.5s. She then again went wacko and started scribbling in her notes as to how irresponsible I was in managing my pain control ( ummm, yea, following "their" rules) uhhh excuse me??? I took what was needed to reduce the Pain to the lowest level with the least number of pills with the longest "active time" possible.
Plus, I discovered this 30 day period was intended to find the optimal dose combo ( in other words "experiment" till something worked...) I just happened to do it on my own with what I had and found the solution 2 weeks faster. Their way would have been to make a change and report to the Dr the results, wait for approval to continue or try again with another combo... and again, and again with dozens of phone calls and play the waiting game for each approval.... AKA Red Tape galore
. I suggested a method that doesnt include time release meds (Morphine) She became quite firm in her beliefs that a time release was essential part of the program. Hmmm... okayyyyyyy if you say so.
As far as the after effects of the chemo today... tummy is queezy ( possible good side effect...diarreaha maybe it will clear out whats stuck ), light weight headache, general muscle aches entire body, sensitivity to light, hearing capacity is slightly diminished, sound is even more muffled.
anyway I got to UMC on time and called into the back by 8:55 ish ( huge thanks to Gary for getting me there in a timely manner) and then back into the waiting room for 9:05 or so... waited a bit longer and then called back to the chemo room. Once back there, I found out that this batch had 5 different steps to complete and will take " most of the day". Gary and I contemplated the time constraints and we decided it would be best for Gary to head on home and get some sleep... called the wifey to make sure she is able to pick me up. and she was. got home around 6:30pm. No one told me it was going to take nearly 11 hrs to get his done
got the first dose of the "every 3 weeks" stuff, had a reaction to the 3rd product, eyeballs went super dry and itchy within moments of opening the valve on the IV ( it was like having fine sand thrown into my eyes)
they administered the proper "antidote" and stopped dosing me with the suspect product ( I think it was called Praxil?)
oohhh BTW, I did some more research on Oxy Codone and found out that the "life span / active working time" is an average of 4 hrs
, so for some "odd reason" it matches my results too , but yet they want to go for 8 hr interval knowing all too well it is 4 hrs While I was there, my 7:00 am dose wore off at about 11:00 am and had a full blown pain spike ( poor Gary had to see this happen)... luckily I remembered that I had brought along 2 @ 7.5s Oxy with me, took those and within 30ish minutes I was able to be composed enuf to resume the session. The nurse asked me if I took the Oxy and I said yes ( she thought I had taken 1, I took 2 of them since it was an hard attack) a few minutes later she asked if I took a morphine earlier, said no to question and she went unprofessional on me, and somewhere also she specifically asked me how many Oxys I took, told her 2 @7.5s. She then again went wacko and started scribbling in her notes as to how irresponsible I was in managing my pain control ( ummm, yea, following "their" rules)
uhhh excuse me??? I took what was needed to reduce the Pain to the lowest level with the least number of pills with the longest "active time" possible. Plus, I discovered this 30 day period was intended to find the optimal dose combo ( in other words "experiment" till something worked...) I just happened to do it on my own with what I had and found the solution 2 weeks faster. Their way would have been to make a change and report to the Dr the results, wait for approval to continue or try again with another combo... and again, and again with dozens of phone calls and play the waiting game for each approval.... AKA Red Tape galore
. I suggested a method that doesnt include time release meds (Morphine) She became quite firm in her beliefs that a time release was essential part of the program. Hmmm... okayyyyyyy if you say so.As far as the after effects of the chemo today... tummy is queezy ( possible good side effect...diarreaha maybe it will clear out whats stuck
), light weight headache, general muscle aches entire body, sensitivity to light, hearing capacity is slightly diminished, sound is even more muffled.
what a day....
anyway I got to UMC on time and called into the back by 8:55 ish ( huge thanks to Gary for getting me there in a timely manner) and then back into the waiting room for 9:05 or so... waited a bit longer and then called back to the chemo room. Once back there, I found out that this batch had 5 different steps to complete and will take " most of the day". Gary and I contemplated the time constraints and we decided it would be best for Gary to head on home and get some sleep... called the wifey to make sure she is able to pick me up. and she was. got home around 6:30pm. No one told me it was going to take nearly 11 hrs to get his done
got the first dose of the "every 3 weeks" stuff, had a reaction to the 3rd product, eyeballs went super dry and itchy within moments of opening the valve on the IV ( it was like having fine sand thrown into my eyes)
they administered the proper "antidote" and stopped dosing me with the suspect product ( I think it was called Praxil?)
oohhh BTW, I did some more research on Oxy Codone and found out that the "life span / active working time" is an average of 4 hrs
While I was there, my 7:00 am dose wore off at about 11:00 am and had a full blown pain spike ( poor Gary had to see this happen)... luckily I remembered that I had brought along 2 @ 7.5s Oxy with me, took those and within 30ish minutes I was able to be composed enuf to resume the session. The nurse asked me if I took the Oxy and I said yes ( she thought I had taken 1, I took 2 of them since it was an hard attack) a few minutes later she asked if I took a morphine earlier, said no to question and she went unprofessional on me, and somewhere also she specifically asked me how many Oxys I took, told her 2 @7.5s. She then again went wacko and started scribbling in her notes as to how irresponsible I was in managing my pain control ( ummm, yea, following "their" rules)
Plus, I discovered this 30 day period was intended to find the optimal dose combo ( in other words "experiment" till something worked...) I just happened to do it on my own with what I had and found the solution 2 weeks faster. Their way would have been to make a change and report to the Dr the results, wait for approval to continue or try again with another combo... and again, and again with dozens of phone calls and play the waiting game for each approval.... AKA Red Tape galore
As far as the after effects of the chemo today... tummy is queezy ( possible good side effect...diarreaha maybe it will clear out whats stuck
Most docs and nurses are really restrictive on opiates nowadays. I understand they are under more scrutiny because of the opiate crisis issue, and the guidelines that they have to follow require them to do this. It's sucks when you have a legitimate problem and are inable to get the medication you need.
I remember after surgery, when they sent me home to recover, the doctor prescribed tylenol and tramadol. Right up to the last 4 hours before discharge, they had me doped up on narcos. I didn't want the opiates to be prescribed anyway, but it struck me as strange how the system works.
I was repairing drywall for this guy that was on home hospice once. He was in a lot of pain, moaning, incoherent, screaming. I asked his nurse/hospice worker what was wrong, and she told me the doctor had lowered his morphine, and he wasn't getting enough to deal with his pain. I don't know what they think is the point of restricting a guys access to pain meds while on hospice. Crazy world we live in.
Hang in there bk, I hope you get this pain management crap sorted out soon.
Man, that's a long day! Nice of Gary to get you there. What is this chemo supposed to be targeting?what a day....
anyway I got to UMC on time and called into the back by 8:55 ish ( huge thanks to Gary for getting me there in a timely manner) and then back into the waiting room for 9:05 or so... waited a bit longer and then called back to the chemo room. Once back there, I found out that this batch had 5 different steps to complete and will take " most of the day". Gary and I contemplated the time constraints and we decided it would be best for Gary to head on home and get some sleep... called the wifey to make sure she is able to pick me up. and she was. got home around 6:30pm. No one told me it was going to take nearly 11 hrs to get his done
got the first dose of the "every 3 weeks" stuff, had a reaction to the 3rd product, eyeballs went super dry and itchy within moments of opening the valve on the IV ( it was like having fine sand thrown into my eyes)
they administered the proper "antidote" and stopped dosing me with the suspect product ( I think it was called Praxil?)
oohhh BTW, I did some more research on Oxy Codone and found out that the "life span / active working time" is an average of 4 hrs
While I was there, my 7:00 am dose wore off at about 11:00 am and had a full blown pain spike ( poor Gary had to see this happen)... luckily I remembered that I had brought along 2 @ 7.5s Oxy with me, took those and within 30ish minutes I was able to be composed enuf to resume the session. The nurse asked me if I took the Oxy and I said yes ( she thought I had taken 1, I took 2 of them since it was an hard attack) a few minutes later she asked if I took a morphine earlier, said no to question and she went unprofessional on me, and somewhere also she specifically asked me how many Oxys I took, told her 2 @7.5s. She then again went wacko and started scribbling in her notes as to how irresponsible I was in managing my pain control ( ummm, yea, following "their" rules)
Plus, I discovered this 30 day period was intended to find the optimal dose combo ( in other words "experiment" till something worked...) I just happened to do it on my own with what I had and found the solution 2 weeks faster. Their way would have been to make a change and report to the Dr the results, wait for approval to continue or try again with another combo... and again, and again with dozens of phone calls and play the waiting game for each approval.... AKA Red Tape galore
As far as the after effects of the chemo today... tummy is queezy ( possible good side effect...diarreaha maybe it will clear out whats stuck
Went to doc yesterday. So I'm loaded up with meds and hope to knock this crud out soon. I so very rarely get sick and I cop a major attitude problem when I do. It's got to go!
Wow what a day! Awesome Gary pulled thru and got you there, and wifey got you home. I’m sorry the nurse was giving you a hard time about the meds. She’s either incredibly insensitive, a closed minded rule follower, or just doesn’t understand your full diagnosis. I’ve run into these issues as well, and I become a little surly and snippy. I know how a nurse is supposed to behave and respond and being on the other end of it, has been a challenge.what a day....
anyway I got to UMC on time and called into the back by 8:55 ish ( huge thanks to Gary for getting me there in a timely manner) and then back into the waiting room for 9:05 or so... waited a bit longer and then called back to the chemo room. Once back there, I found out that this batch had 5 different steps to complete and will take " most of the day". Gary and I contemplated the time constraints and we decided it would be best for Gary to head on home and get some sleep... called the wifey to make sure she is able to pick me up. and she was. got home around 6:30pm. No one told me it was going to take nearly 11 hrs to get his done
got the first dose of the "every 3 weeks" stuff, had a reaction to the 3rd product, eyeballs went super dry and itchy within moments of opening the valve on the IV ( it was like having fine sand thrown into my eyes)
they administered the proper "antidote" and stopped dosing me with the suspect product ( I think it was called Praxil?)
oohhh BTW, I did some more research on Oxy Codone and found out that the "life span / active working time" is an average of 4 hrs
While I was there, my 7:00 am dose wore off at about 11:00 am and had a full blown pain spike ( poor Gary had to see this happen)... luckily I remembered that I had brought along 2 @ 7.5s Oxy with me, took those and within 30ish minutes I was able to be composed enuf to resume the session. The nurse asked me if I took the Oxy and I said yes ( she thought I had taken 1, I took 2 of them since it was an hard attack) a few minutes later she asked if I took a morphine earlier, said no to question and she went unprofessional on me, and somewhere also she specifically asked me how many Oxys I took, told her 2 @7.5s. She then again went wacko and started scribbling in her notes as to how irresponsible I was in managing my pain control ( ummm, yea, following "their" rules)
Plus, I discovered this 30 day period was intended to find the optimal dose combo ( in other words "experiment" till something worked...) I just happened to do it on my own with what I had and found the solution 2 weeks faster. Their way would have been to make a change and report to the Dr the results, wait for approval to continue or try again with another combo... and again, and again with dozens of phone calls and play the waiting game for each approval.... AKA Red Tape galore
As far as the after effects of the chemo today... tummy is queezy ( possible good side effect...diarreaha maybe it will clear out whats stuck
Hope you continue to feel relatively “ok” post chemo. They’re all different but I did find days 3-5 were the toughest on me cognitively and fatigue-wise.
And most importantly I hope it works to shrink the tumor and ease the pain.
Hang in there!
I'm afraid I didn't do anything to improve Nurse Ratchet's attitude when I went to the nurse's station , she did her best to ignore me so I raised my voice to make sure all three nurses heard me . I asked her if you could take your pain meds and she started in about you not taking the morphine so I cut her off and got straight to the point and asked if the oxy would interact with your chemo she said no it wouldn't so I turned around and walked off on her to tell you to take the meds . I have no patience for for that kinda crap from Dr's or nurses . Especially with you sitting there shaking , damd witch .what a day....
anyway I got to UMC on time and called into the back by 8:55 ish ( huge thanks to Gary for getting me there in a timely manner) and then back into the waiting room for 9:05 or so... waited a bit longer and then called back to the chemo room. Once back there, I found out that this batch had 5 different steps to complete and will take " most of the day". Gary and I contemplated the time constraints and we decided it would be best for Gary to head on home and get some sleep... called the wifey to make sure she is able to pick me up. and she was. got home around 6:30pm. No one told me it was going to take nearly 11 hrs to get his done
got the first dose of the "every 3 weeks" stuff, had a reaction to the 3rd product, eyeballs went super dry and itchy within moments of opening the valve on the IV ( it was like having fine sand thrown into my eyes)
they administered the proper "antidote" and stopped dosing me with the suspect product ( I think it was called Praxil?)
oohhh BTW, I did some more research on Oxy Codone and found out that the "life span / active working time" is an average of 4 hrs
While I was there, my 7:00 am dose wore off at about 11:00 am and had a full blown pain spike ( poor Gary had to see this happen)... luckily I remembered that I had brought along 2 @ 7.5s Oxy with me, took those and within 30ish minutes I was able to be composed enuf to resume the session. The nurse asked me if I took the Oxy and I said yes ( she thought I had taken 1, I took 2 of them since it was an hard attack) a few minutes later she asked if I took a morphine earlier, said no to question and she went unprofessional on me, and somewhere also she specifically asked me how many Oxys I took, told her 2 @7.5s. She then again went wacko and started scribbling in her notes as to how irresponsible I was in managing my pain control ( ummm, yea, following "their" rules)
Plus, I discovered this 30 day period was intended to find the optimal dose combo ( in other words "experiment" till something worked...) I just happened to do it on my own with what I had and found the solution 2 weeks faster. Their way would have been to make a change and report to the Dr the results, wait for approval to continue or try again with another combo... and again, and again with dozens of phone calls and play the waiting game for each approval.... AKA Red Tape galore
As far as the after effects of the chemo today... tummy is queezy ( possible good side effect...diarreaha maybe it will clear out whats stuck
yup, I agree on the restrictions being crazy. They prescribe low dose numbers but are allowed to go to levels that could be almost lethal...
for example my Oxy is at 7.5 mg 3X a day for a total daily of 22.5 mg, but yet max daily limit is 288 mg/day ( max dose, just before lethal in hi tolerance patients) When I had my leg messed up I was on Oxy 25mg @ 6X a day ( 150 mg total a day) now Im down to 20% of that and they really dont want to go any higher
. This 0-10 scale for pain they seem to adore is utter bunk.... to be truly effective, you need to experience a level 10 pain to understand where the other numbers stand. I had a chance to chat with the Pain med Dr for a tad and she asked me as to where my pain levels were at just after taking the meds and where they go to when they wear off. I asked her then as to what part of me you want numbers on. Poor girl looked so confused then and I explained that my ribs were the first to be relieved and last to feel return pain, the shoulder and hip the hardest to relieve and quickest to return. I then asked her what was the most intense pain she had ever experienced in her life, she had rolled her ankle during a softball game in high school....... I told her that compared to what I am dealing with would be a 3-4 as to my present combined issues which would rate in at 8-9. I then asked her what she would have rated her rolled ankle at that time when it hurt the most, she said a 9-10... she said it was the worst pain she had ever experienced.. BINGO!!! a look of epiphony came across her face and she stood there for what seemed like 30 seconds staring into the depths of the universe. I told her that no one can truly know what a level 10 pain feels like due to them being passed out or on general anithesia. When one starts into the level 9 pain, it has its own scale ( 9.0-9.9) therefore adding 9 more steps. I think she understood it then 
.
mainly the squamous cell in the lymph nodes to reduce the size in preparations for removal, my question is when the small ones that are involved go to normal size will they remove them or leave them consideing them to be unaffected... the cancer in the bone, lung and soft tissue is a genetic mutation of the squamous cell and unaffected by the chemo ( these are the uncurable non treatable types, this is what places me into the terminal cancer zone).
I believe the nurse knew she was in for a long day with me and didnt want to be bothered. Also, she was one of those " hey look dumbazz, I am more educated on this topic than you so I know more about it than you do" attitude and one who definately believes rules are not to be broken types. What would be kewl is during classes dealing with pain, the nurse in training gets an injection that would last a few minutes to several hours that mimics or reproduces the pain the patient experiences just to get a REAL idea of whats going on. I think it would really give them a totally new outlook... helllll.... the armed forces let new recruits experience the fulll blown effects of a tear gas attack
as far as the "tumor" ( lump in the neck) it seems to be a cyst like encasement holding several smaller tumors or a cluster of nodes that are oversized, the cyst like encasement is whats holding approximately 20-30 ml of fluid, it expands to the size of a small chicken egg and then at that point the pressure begins to exceed the holding "power" of its wall at the original site where the needle biopsy was done and then things get messy on its own accord. I have suggested several times to 4 different Drs to install a drain, but no, I have to endure the pressure build ups and pain and messy releases. What Im waiting for ( but not really) is for this breakage to occur somewhere else and have all of the gunk spread inside of my neck and things go septic ( is that the right word septic? sepsis? )
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