No More Chemo, Nine Hits of Radiation Left
It was a long night and day for mom. Yesterday, the oncologist nurse (head nurse) called back with a prescription of Tramadol 50 mg. Mom's suppose to take 1 tablet every 6 hours. She said it would help with inflammation and pain. I'm not sure how effective it is b/c we didn't get it until 5:30 last night. She took it and then a few minutes later took a full dose of hydrocodone. I left their house at 9:30 last night thinking she'd be okay through the night. Dad says she was up alot last night hurting.
This morning he thought she was in bed asleep while he was working in the office, when he heard her calling for help in the kitchen. She was doubled over thinking she was going to pass out. She felt really bad this morning, probably about the worse I've seen her, but we took her to radiation this morning anyway. Before leaving, I gave her an anxiety pill, another dose of hydrocodone and nausea medicine.
For most of this week she's not eating or drinking much and is staying in bed either hurting or knocked out for short spells from hydrocodone. I've tried to keep her drinking water especially b/c she had the chemo - Mitomycen-C on Monday and the 5-FU pumping all week until noon today, but she only sipped water here and there.
At the hospital for radiation, first time ever I asked for a wheelchair when we pulled up b/c she's so lightheaded, weak and drugged from the hydrocodone. I tell ya, I really despise the nurse there. She doesn't know anything, but acts like she knows it all. I'd respect her more if she'd just say that she doesn't know but will try to go find out instead of dishing out wrong info left and right.
Today, she brought out a thermometer, mom ran a fever yesterday afternoon and evening at the highest was 99.94. Because she ran a fever and her cell count was so low last chemo round and wasn't as high as the oncologist would have liked at the start of this weeks chemo, he said to routinely check her temp and call in and start taking the antibiotic he had us get, if her temp hit 100. Anyway the nurse attempted to take mom's temp with a digital thermometer. B/c mom had just taken a drink of water, she said she'd take it in her armpit. It wasn't registering. I told her to forget it, we'd have it checked at the clinic after radiation. She said that there's no need to worry unless her temp is 102 or more. 102 temperature for someone on chemo is very serious!
She's the same stupid nurse that told me to get Tucks Medicated pads which totally lit mom up Wed. I might as well had poured straight alcohol on her, it hurt so bad. Also, she told me to get Domeboro soaks to go in her sitz bath. Okay Domeboro is to dry up poison ivy and such rashes, radiation is totally drying mom up down under, so that again was bad info. Although we kinda figured it out on our own, the head nurse at the chemo place told us to immediately stop both.
The stupid radiation nurse was the one yesterday who also said that mom's pain from the radiation burns was like what she experiences from sunburns. She said she gets really bad sunburns. Tell me how I could not think she's a total idiot equating mom's radiation burns to her sunburns. She also brought us a little tiny sample of aquafor and said to use it sparingly b/c a little goes a long way. Mom almost goes through a regular size bottle each day. We slather it on the inside of her legs and front to back at least a 1/4 of an inch thick every time she goes to the bathroom and/or gets a sitz bath (almost every 2 hours) I'm telling ya, she doesn't know anything.
The radiologists are gone until Monday, hope they have a wonderful long weekend, NOT.
Mom was radiated and we left for the chemo clinic.
Back in the treatment room, they checked her blood pressure and it was 87/63. The head nurse took Mom to a room to check her down under. She says that it does look good (like the radiologist said) She said that it no doubt is extremely painful but the skin is still intact and while there's swelling it's still okay. She ordered mom a thing of morphine, they unhooked the chemo pump and gave her a bag of fluids. Oh, and she also had her $4000.00 shot to up her white blood cell count. I'm still in shock that 1 shot can cost $4000.00, that's crazy. The financial secretary said no worries, insurance cover it. Crazy, I tell ya!
By the time we left, mom looked so much better. The morphine and fluids really brought her back to life. They were suppose to take the pic line out today but decided to leave it in just in case she needs another IV of fluids. Head nurse told me to make sure she's getting enough water and to up the hydrocodone to 6 teaspoons rather than 3 every 6 hours. She said to give her doses between 2 - 6 teaspoons during the day according to the pain level and give her exactly 6 teaspoons before bed each night. Mom's been trying to suffer through instead of taking the full dose as needed. I've taken over administering medicine!
I guess the morphine really worked wonders and thank God and the head nurse for it b/c when we got home mom asked me if I thought her burn was better than yesterday b/c it really wasn't hurting. It looks the same, she's just not in crazy pain b/c she's drugged.
This afternoon/evening has been pretty uneventful. Her pain level is way down and she just wants to sleep. She's not wanting to do her sitz baths or still drink enough water b/c she just wants to sleep. It's hard to enforce it b/c she's resting so peacefully.
The head nurse is on-call all day tomorrow, I'm going to call and ask about the Biafine Prescription Cream something suggested on my post on the colon club. I told the head nurse that I'm going to totally rely on her and mom's oncologist for help, not the folks at radiation. We'll try to keep going for radiation but besides that we're done with them. I'm still not giving up on a prescription cream that will numb her burns.
As far as side effects from the chemo, the main one this week has been nausea and today lightheadedness from dehydration. Mom and I were talking yesterday. She's wondering if this round of chemo is better than last. During the first week of chemo last time she was not only nausis and lightheaded but also felt like she had the flu 100 times over. I think the pain is so intense from the burns from radiation, that it's masking the side effects of chemo. You know, kinda like if your thumb hurts, let me stomp on your foot to take your mind off it.
That's where we're at today. I can't tell you what it means to know there's caring people who are there for you and understand the pain mom's in b/c the ones that don't really upset you.
I know I'm being terrible but I've really lost patience with incompetent or just plain uncaring docs, nurses, technicians and such. There's those really great ones out there who make such a difference but nothing can make you snap faster than the others.
The hospital has a valet service for radiation patients. We are greeted by the same valet guy every day and he meets us on some days with smiles and other days with a face of genuine concern and kind words. I can't tell you what he means to us.
Also, I've told you about the really great (cute I might add) radiation technician. He is great at his job, he has a personality and sense of humor to brighten really dark days, and truly is concerned and connects with his patients. All the patients including mom want him each and every day. He told me today that we can ask for him each day which I will (Man, I hope he doesn't tell the other patients that or else everyone will only see him) The heartless technicians who are just doing a job makes mom have anxiety attacks and want to quit that much more. I don't think they understand that their patients are sometimes hanging on by threads and their actions and demeanor really can be devastating blow.
Soccer mom is getting worse. The radiation to her brain tumor has her unable to think straight, has really affected her mental processing. She started radiation the same time mom did and started having side effects when mom did. The first 2 weeks she came in bright and cheerful always grabbing our hands and asking how we are doing. She is such an amazing sweet, giving person. (full of life) The third week when the burns started bothering mom and weird pains shooting in her hips, soccer mom came in off balance and kinda angry but bound and determined not to let the cancer or treatment take her down. Please pray for her and her family!
Mom's chemo neighbor was a really pretty probably 30 something woman. She was dressed to the nines and looked picture perfect healthy. She really was concerned for mom and was so sweet. She asked mom's name and said she'd pray for her. She's been on chemo for 5 years. She has a blood disease, it's terminal. Doesn't it just make you want to march right up to God and demand to know why?
My mom is my life right now. All my energy, effort, thoughts and love go to her and her recovery. What hurts the most and is the hardest to accept, is that many times it's not enough to make it better. I still can't believe this has happened. I was definitely one of those people who didn't have a clue about this disease (so I guess I should have more patience for the clueless)
I'm definitely 100% forever changed.
This morning he thought she was in bed asleep while he was working in the office, when he heard her calling for help in the kitchen. She was doubled over thinking she was going to pass out. She felt really bad this morning, probably about the worse I've seen her, but we took her to radiation this morning anyway. Before leaving, I gave her an anxiety pill, another dose of hydrocodone and nausea medicine.
For most of this week she's not eating or drinking much and is staying in bed either hurting or knocked out for short spells from hydrocodone. I've tried to keep her drinking water especially b/c she had the chemo - Mitomycen-C on Monday and the 5-FU pumping all week until noon today, but she only sipped water here and there.
At the hospital for radiation, first time ever I asked for a wheelchair when we pulled up b/c she's so lightheaded, weak and drugged from the hydrocodone. I tell ya, I really despise the nurse there. She doesn't know anything, but acts like she knows it all. I'd respect her more if she'd just say that she doesn't know but will try to go find out instead of dishing out wrong info left and right.
Today, she brought out a thermometer, mom ran a fever yesterday afternoon and evening at the highest was 99.94. Because she ran a fever and her cell count was so low last chemo round and wasn't as high as the oncologist would have liked at the start of this weeks chemo, he said to routinely check her temp and call in and start taking the antibiotic he had us get, if her temp hit 100. Anyway the nurse attempted to take mom's temp with a digital thermometer. B/c mom had just taken a drink of water, she said she'd take it in her armpit. It wasn't registering. I told her to forget it, we'd have it checked at the clinic after radiation. She said that there's no need to worry unless her temp is 102 or more. 102 temperature for someone on chemo is very serious!
She's the same stupid nurse that told me to get Tucks Medicated pads which totally lit mom up Wed. I might as well had poured straight alcohol on her, it hurt so bad. Also, she told me to get Domeboro soaks to go in her sitz bath. Okay Domeboro is to dry up poison ivy and such rashes, radiation is totally drying mom up down under, so that again was bad info. Although we kinda figured it out on our own, the head nurse at the chemo place told us to immediately stop both.
The stupid radiation nurse was the one yesterday who also said that mom's pain from the radiation burns was like what she experiences from sunburns. She said she gets really bad sunburns. Tell me how I could not think she's a total idiot equating mom's radiation burns to her sunburns. She also brought us a little tiny sample of aquafor and said to use it sparingly b/c a little goes a long way. Mom almost goes through a regular size bottle each day. We slather it on the inside of her legs and front to back at least a 1/4 of an inch thick every time she goes to the bathroom and/or gets a sitz bath (almost every 2 hours) I'm telling ya, she doesn't know anything.
The radiologists are gone until Monday, hope they have a wonderful long weekend, NOT.
Mom was radiated and we left for the chemo clinic.
Back in the treatment room, they checked her blood pressure and it was 87/63. The head nurse took Mom to a room to check her down under. She says that it does look good (like the radiologist said) She said that it no doubt is extremely painful but the skin is still intact and while there's swelling it's still okay. She ordered mom a thing of morphine, they unhooked the chemo pump and gave her a bag of fluids. Oh, and she also had her $4000.00 shot to up her white blood cell count. I'm still in shock that 1 shot can cost $4000.00, that's crazy. The financial secretary said no worries, insurance cover it. Crazy, I tell ya!
By the time we left, mom looked so much better. The morphine and fluids really brought her back to life. They were suppose to take the pic line out today but decided to leave it in just in case she needs another IV of fluids. Head nurse told me to make sure she's getting enough water and to up the hydrocodone to 6 teaspoons rather than 3 every 6 hours. She said to give her doses between 2 - 6 teaspoons during the day according to the pain level and give her exactly 6 teaspoons before bed each night. Mom's been trying to suffer through instead of taking the full dose as needed. I've taken over administering medicine!
I guess the morphine really worked wonders and thank God and the head nurse for it b/c when we got home mom asked me if I thought her burn was better than yesterday b/c it really wasn't hurting. It looks the same, she's just not in crazy pain b/c she's drugged.
This afternoon/evening has been pretty uneventful. Her pain level is way down and she just wants to sleep. She's not wanting to do her sitz baths or still drink enough water b/c she just wants to sleep. It's hard to enforce it b/c she's resting so peacefully.
The head nurse is on-call all day tomorrow, I'm going to call and ask about the Biafine Prescription Cream something suggested on my post on the colon club. I told the head nurse that I'm going to totally rely on her and mom's oncologist for help, not the folks at radiation. We'll try to keep going for radiation but besides that we're done with them. I'm still not giving up on a prescription cream that will numb her burns.
As far as side effects from the chemo, the main one this week has been nausea and today lightheadedness from dehydration. Mom and I were talking yesterday. She's wondering if this round of chemo is better than last. During the first week of chemo last time she was not only nausis and lightheaded but also felt like she had the flu 100 times over. I think the pain is so intense from the burns from radiation, that it's masking the side effects of chemo. You know, kinda like if your thumb hurts, let me stomp on your foot to take your mind off it.
That's where we're at today. I can't tell you what it means to know there's caring people who are there for you and understand the pain mom's in b/c the ones that don't really upset you.
I know I'm being terrible but I've really lost patience with incompetent or just plain uncaring docs, nurses, technicians and such. There's those really great ones out there who make such a difference but nothing can make you snap faster than the others.
The hospital has a valet service for radiation patients. We are greeted by the same valet guy every day and he meets us on some days with smiles and other days with a face of genuine concern and kind words. I can't tell you what he means to us.
Also, I've told you about the really great (cute I might add) radiation technician. He is great at his job, he has a personality and sense of humor to brighten really dark days, and truly is concerned and connects with his patients. All the patients including mom want him each and every day. He told me today that we can ask for him each day which I will (Man, I hope he doesn't tell the other patients that or else everyone will only see him) The heartless technicians who are just doing a job makes mom have anxiety attacks and want to quit that much more. I don't think they understand that their patients are sometimes hanging on by threads and their actions and demeanor really can be devastating blow.
Soccer mom is getting worse. The radiation to her brain tumor has her unable to think straight, has really affected her mental processing. She started radiation the same time mom did and started having side effects when mom did. The first 2 weeks she came in bright and cheerful always grabbing our hands and asking how we are doing. She is such an amazing sweet, giving person. (full of life) The third week when the burns started bothering mom and weird pains shooting in her hips, soccer mom came in off balance and kinda angry but bound and determined not to let the cancer or treatment take her down. Please pray for her and her family!
Mom's chemo neighbor was a really pretty probably 30 something woman. She was dressed to the nines and looked picture perfect healthy. She really was concerned for mom and was so sweet. She asked mom's name and said she'd pray for her. She's been on chemo for 5 years. She has a blood disease, it's terminal. Doesn't it just make you want to march right up to God and demand to know why?
My mom is my life right now. All my energy, effort, thoughts and love go to her and her recovery. What hurts the most and is the hardest to accept, is that many times it's not enough to make it better. I still can't believe this has happened. I was definitely one of those people who didn't have a clue about this disease (so I guess I should have more patience for the clueless)
I'm definitely 100% forever changed.
Comments
I'm just sick about all your family is having to go through. I understand about uncaring "professional" medical people. A friend of ours whose last name is Moon had to do exactly what Carol is doing. His "techs" made comments about being "Mooned" when he'd come for radiation.
It seems God isn't listening sometimes, but He's all we have to hang onto when we're in places like this. I pray He'll give your mom rest and freedom from pain. And that He'll give you and your dad the strength you need to endure. I've been a caretaker, too, and I know how hard it is.
I'll be in touch often.
I love all of you.
Barbara
http://www.miriadafilms.ru/
onecrazeemommy.blogspot.com