Chin up Cag, it'll get worse before it gets better and all that other mindless platitudanal shit.
We're rooting for you.
--A
In Memoriam: Cagliostro
Moderators: Orlion, balon!, aliantha
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Cagliostro
- The Gap Into Spam
- Posts: 9360
- Joined: Tue Jun 28, 2005 10:39 pm
- Location: Colorado
So, I did the start of my 5th infusion yesterday. All the prestuff went off ok (the steroids and the anti-nausea stuff) but 15 minutes into my chemo, I started feel weird, and went into the bathroom to see if that had anything to do with it and if I'd feel better after doing so. Instead I felt worse and felt like I needed to throw up, and my face was feeling flush.
I went out to the nurse station and let them know I thought I was having a reaction. They immediately rushed into action, seeing my red sweating face, and sat me down closer to them. They took my blood pressure and saw it was very low. They noticed a bit of a rash on my chest, and kept asking me if it felt like I was having trouble breathing. Over and over again. I wasn't, thankfully. They pumped a bunch of Benadryl into me and I started getting really sleepy really fast. I tried to stay awake to let them know my condition, but was swiftly out. I did hear they had me stabilized before I went out. Every time I woke up, there was someone standing over me asking me how I was doing. I woke up fully 2 hours later and it sounded like they had called my wife for me to be picked up, but they would not continue the chemo today, and probably will be switching me to something else. I'm very surprised that they haven't checked back with me today to see if I'm doing ok, and give me an update. Strangely enough, while I was typing the last sentence, my wife just came down and let me know she called them to check, and the receptionist also said she was surprised nobody has followed up.
Growing more annoyed with my doc, but loving the infusion nurses so much. They are all so caring and awesome, and it is what keeps me coming back. Again, I'm sure the doc is overworked, but dammit.
I went to my urologist for a checkup on Monday and originally to check my flow, but the person who brought me in was supposed to have me do something else, but asked me to pee in a cup, so that was botched, and the whole point of my visit was pointless. I love my female urologist, who brought me to a physical therapist who helped things along a lot more than any other urologist before. And the fact that the male urologist I had before that I nicknamed Dr. Bumpyknuckles because my anus would feel prolapsed when I would leave was a good reason to find a female urologist with smaller fingers. Anyway, she said she was very surprised and sad for me that I had received this diagnosis. And made me feel like a doctor should make me feel - cared for and cared about. She apologized about the botched with the staff, and that everybody is in a kind of autodrive mode these days.
She did reiterated that my cancer doc was the best, and that they constantly refer people over to him. I said it is very good to hear that as much as I have been hearing that, and it makes me feel like I am in good hands, despite how much his bedside manner sucks. She had a BIG laugh over that - almost a knowing laugh.
Anyway, now I am pretty nervous about what is coming next, how my body will react, and if I'm going to get as good of treatment as I would if my body could take it. I'm starting to worry if we'll be able to get this into remission after all.
Meanwhile, someone who started treatment the same day as me I talked with, and he said he has been having no trouble with treatments at all, and has already had his PET scan and said they saw no sign of cancer now. And he also was stage 4. They are going to reduce his treatment a lot but keep with it until the end to be safe. I am so happy for him to not have to worry about it all. I just wish I was in the same place, but am nothing but happy for him.
I kept asking the nurses as I was waking up what that was that I just experienced, and they just kept saying it was something that sometimes happens, and that it is a reaction to the chemo. I kept constantly falling asleep last night, and was pretty useless, because I've always been so knocked out whenever I take antihistamines. This morning I looked it up and it looks like it was anaphylaxis. Scary stuff, and I hope I never go through that again.
I went out to the nurse station and let them know I thought I was having a reaction. They immediately rushed into action, seeing my red sweating face, and sat me down closer to them. They took my blood pressure and saw it was very low. They noticed a bit of a rash on my chest, and kept asking me if it felt like I was having trouble breathing. Over and over again. I wasn't, thankfully. They pumped a bunch of Benadryl into me and I started getting really sleepy really fast. I tried to stay awake to let them know my condition, but was swiftly out. I did hear they had me stabilized before I went out. Every time I woke up, there was someone standing over me asking me how I was doing. I woke up fully 2 hours later and it sounded like they had called my wife for me to be picked up, but they would not continue the chemo today, and probably will be switching me to something else. I'm very surprised that they haven't checked back with me today to see if I'm doing ok, and give me an update. Strangely enough, while I was typing the last sentence, my wife just came down and let me know she called them to check, and the receptionist also said she was surprised nobody has followed up.
Growing more annoyed with my doc, but loving the infusion nurses so much. They are all so caring and awesome, and it is what keeps me coming back. Again, I'm sure the doc is overworked, but dammit.
I went to my urologist for a checkup on Monday and originally to check my flow, but the person who brought me in was supposed to have me do something else, but asked me to pee in a cup, so that was botched, and the whole point of my visit was pointless. I love my female urologist, who brought me to a physical therapist who helped things along a lot more than any other urologist before. And the fact that the male urologist I had before that I nicknamed Dr. Bumpyknuckles because my anus would feel prolapsed when I would leave was a good reason to find a female urologist with smaller fingers. Anyway, she said she was very surprised and sad for me that I had received this diagnosis. And made me feel like a doctor should make me feel - cared for and cared about. She apologized about the botched with the staff, and that everybody is in a kind of autodrive mode these days.
She did reiterated that my cancer doc was the best, and that they constantly refer people over to him. I said it is very good to hear that as much as I have been hearing that, and it makes me feel like I am in good hands, despite how much his bedside manner sucks. She had a BIG laugh over that - almost a knowing laugh.
Anyway, now I am pretty nervous about what is coming next, how my body will react, and if I'm going to get as good of treatment as I would if my body could take it. I'm starting to worry if we'll be able to get this into remission after all.
Meanwhile, someone who started treatment the same day as me I talked with, and he said he has been having no trouble with treatments at all, and has already had his PET scan and said they saw no sign of cancer now. And he also was stage 4. They are going to reduce his treatment a lot but keep with it until the end to be safe. I am so happy for him to not have to worry about it all. I just wish I was in the same place, but am nothing but happy for him.
I kept asking the nurses as I was waking up what that was that I just experienced, and they just kept saying it was something that sometimes happens, and that it is a reaction to the chemo. I kept constantly falling asleep last night, and was pretty useless, because I've always been so knocked out whenever I take antihistamines. This morning I looked it up and it looks like it was anaphylaxis. Scary stuff, and I hope I never go through that again.
Life is a waste of time
Time is a waste of life
So get wasted all of the time
And you'll have the time of your life
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deer of the dawn
- The Gap Into Spam
- Posts: 6758
- Joined: Mon Feb 11, 2008 12:48 pm
- Location: Jos, Nigeria
- Contact:
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Cagliostro
- The Gap Into Spam
- Posts: 9360
- Joined: Tue Jun 28, 2005 10:39 pm
- Location: Colorado
So, I had the PET scan on Tuesday, and just today met with the doc to find out what is next for me.
He looked at the PET scan, and said the results are mixed. While the lymph nodes have shrunk a ways and not lighting up nearly as much as before, the liver is showing new growths.
He said we have three choices on how to proceed.
1. Do nothing and we can get you set up in a hospice and we can make you comfortable and spend time with the family.
2. Do a different type of treatment that is a little easier on the body and helps maintain a good standard of living.
3. Do a very aggressive type of chemo that is hard on the kidneys and could cause them to shut down.
I opted for #2. The fact that #1 was brought up first scared the crap out of me. And option #3 sounds like shit. I just wonder after all the time we have taken since my last treatment (4 weeks since the last attempt, but was flushed out of my system, but 6 weeks since my last full treatment) if that is what caused things to start growing again.
I'm getting very disheartened by all of this, truth be told. Mainly with my doctor more than anything else, and I just keep wondering if I need to seek someone else since he seems stumped by my condition. He also says that he gets so worried from my scans and such, but when he sees me, I look like a million bucks. And I'm not really having any constant pain, and my blood work looks just fine.
I'm just worried about another reaction like the last one, and that is going to limit my options even more. But I am still in for the fight. I just hope my body doesn't reject it all.
Meanwhile, I saw something from Alex Trebeck that has pancreatic cancer (I wasn't diagnosed yet when I heard about him) and that he is feeling fine and his numbers are fine, and the 18% one year life expectancy has been surpassed (which reading that made me very nervous indeed as I either have pancreatic cancer or cancer in the gall bladder). I saw that before I went to my meeting. Then when I got home, I saw something about Ruth Bader Ginsberg, who also has pancreatic cancer, is taking chemo again to fight it off.
It's all really getting me down today, and I was really hoping for better news. I plan to keep fighting, but today I just want to lay around and feel sorry for myself.
He looked at the PET scan, and said the results are mixed. While the lymph nodes have shrunk a ways and not lighting up nearly as much as before, the liver is showing new growths.
He said we have three choices on how to proceed.
1. Do nothing and we can get you set up in a hospice and we can make you comfortable and spend time with the family.
2. Do a different type of treatment that is a little easier on the body and helps maintain a good standard of living.
3. Do a very aggressive type of chemo that is hard on the kidneys and could cause them to shut down.
I opted for #2. The fact that #1 was brought up first scared the crap out of me. And option #3 sounds like shit. I just wonder after all the time we have taken since my last treatment (4 weeks since the last attempt, but was flushed out of my system, but 6 weeks since my last full treatment) if that is what caused things to start growing again.
I'm getting very disheartened by all of this, truth be told. Mainly with my doctor more than anything else, and I just keep wondering if I need to seek someone else since he seems stumped by my condition. He also says that he gets so worried from my scans and such, but when he sees me, I look like a million bucks. And I'm not really having any constant pain, and my blood work looks just fine.
I'm just worried about another reaction like the last one, and that is going to limit my options even more. But I am still in for the fight. I just hope my body doesn't reject it all.
Meanwhile, I saw something from Alex Trebeck that has pancreatic cancer (I wasn't diagnosed yet when I heard about him) and that he is feeling fine and his numbers are fine, and the 18% one year life expectancy has been surpassed (which reading that made me very nervous indeed as I either have pancreatic cancer or cancer in the gall bladder). I saw that before I went to my meeting. Then when I got home, I saw something about Ruth Bader Ginsberg, who also has pancreatic cancer, is taking chemo again to fight it off.
It's all really getting me down today, and I was really hoping for better news. I plan to keep fighting, but today I just want to lay around and feel sorry for myself.
Life is a waste of time
Time is a waste of life
So get wasted all of the time
And you'll have the time of your life
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peter
- The Gap Into Spam
- Posts: 11542
- Joined: Tue Aug 25, 2009 10:08 am
- Location: Another time. Another place.
- Been thanked: 6 times
Cag - it's almost impossible to know how to respond to a post like this. Please just know I've read it and am deeply moved. You may not feel brave on the inside today but on the outside I promise, you have the courage of a lion.
The truth is a Lion and does not need protection. Once free it will look after itself.
....and the glory of the world becomes less than it was....
'Have we not served you well'
'Of course - you know you have.'
'Then let it end.'
We are the Bloodguard
....and the glory of the world becomes less than it was....
'Have we not served you well'
'Of course - you know you have.'
'Then let it end.'
We are the Bloodguard
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Cagliostro
- The Gap Into Spam
- Posts: 9360
- Joined: Tue Jun 28, 2005 10:39 pm
- Location: Colorado
I've been taking time away for a bit. Things got extra hard last week after the start of the new chemo. Supposed to be easier, and it was not.
Started the new treatment on Monday July 27th, went by fine. No ill effects or nothing.
Tuesday, doing good until about 6pm when I had chills. I felt cold the rest of the night, but bundled up was ok. I had a grapefruit about 3pm (this is relevant for later).
Wednesday morning about midnight I woke up every 30 minutes, but just rolled over and went back to sleep. EVERY FREAKING 30 MINUTES. Exhausted in the morning and feeling like death. Flu like symptoms, 100.6 temperature. Called nurse who said to take ibuprofen and acetaminophen and if the temperature doesn't come down in an hour to call back. It did, thankfully. Had a couple more fever spikes, but came down again.
Thursday, my birthday. Same but worse. More fever spikes and body aches. Definitely a 2020 birthday. Wife looked up the new chemo to see what the cancer center did not tell us, especially with the doc being dismissive of when I asked what side effects for the new, and he said pretty much the same as the last type, and when I asked for another chemo class, he said he didn't think I'd need it. Definitely different from what my wife determined, and even warned against eating grapefruit and how it can block things up. Did not want to eat at all and felt like a big fat bloat muffin.
Friday, a bit better, and by the weekend, really starting to feel myself again, with a few hot and cold spells.
Monday 8/3, another round of chemo, and felt fine.
Tuesday, felt fine until right before bed, and just felt a little cold before bed.
Wednesday - instead of every 30 minutes, it was every hour waking up and having to pee each time. Got crap sleep. Woke up feeling ok, but as the day progressed, cold and hot and cold and hot and fever and not fever and just wanted to take a nap despite having to be awake to work at home. Terrible day.
Today - mostly feel ok, got a lot of sleep, but tummy upset. Had my first official chemo barf.
Hoping things will get better and better as it goes along, and the nurse said for the fever thing that it is something to expect with this (even though they didn't tell me anything about it), but it is different from other side effects as it does get better each time. I certainly hope so.
I am officially pissed at my doctor, but don't really know about moving over to another doc unless I truly feel neglect again. He's close, and since I have to try to put in my time at work, close is good. Hanging on for now. I'm really feeling like I'm not exactly winning this battle yet, but yet I'm still fighting.
Started the new treatment on Monday July 27th, went by fine. No ill effects or nothing.
Tuesday, doing good until about 6pm when I had chills. I felt cold the rest of the night, but bundled up was ok. I had a grapefruit about 3pm (this is relevant for later).
Wednesday morning about midnight I woke up every 30 minutes, but just rolled over and went back to sleep. EVERY FREAKING 30 MINUTES. Exhausted in the morning and feeling like death. Flu like symptoms, 100.6 temperature. Called nurse who said to take ibuprofen and acetaminophen and if the temperature doesn't come down in an hour to call back. It did, thankfully. Had a couple more fever spikes, but came down again.
Thursday, my birthday. Same but worse. More fever spikes and body aches. Definitely a 2020 birthday. Wife looked up the new chemo to see what the cancer center did not tell us, especially with the doc being dismissive of when I asked what side effects for the new, and he said pretty much the same as the last type, and when I asked for another chemo class, he said he didn't think I'd need it. Definitely different from what my wife determined, and even warned against eating grapefruit and how it can block things up. Did not want to eat at all and felt like a big fat bloat muffin.
Friday, a bit better, and by the weekend, really starting to feel myself again, with a few hot and cold spells.
Monday 8/3, another round of chemo, and felt fine.
Tuesday, felt fine until right before bed, and just felt a little cold before bed.
Wednesday - instead of every 30 minutes, it was every hour waking up and having to pee each time. Got crap sleep. Woke up feeling ok, but as the day progressed, cold and hot and cold and hot and fever and not fever and just wanted to take a nap despite having to be awake to work at home. Terrible day.
Today - mostly feel ok, got a lot of sleep, but tummy upset. Had my first official chemo barf.
Hoping things will get better and better as it goes along, and the nurse said for the fever thing that it is something to expect with this (even though they didn't tell me anything about it), but it is different from other side effects as it does get better each time. I certainly hope so.
I am officially pissed at my doctor, but don't really know about moving over to another doc unless I truly feel neglect again. He's close, and since I have to try to put in my time at work, close is good. Hanging on for now. I'm really feeling like I'm not exactly winning this battle yet, but yet I'm still fighting.
Life is a waste of time
Time is a waste of life
So get wasted all of the time
And you'll have the time of your life
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Fist and Faith
- Magister Vitae
- Posts: 23561
- Joined: Sun Dec 01, 2002 8:14 pm
- Has thanked: 6 times
- Been thanked: 32 times
Wow. I'm on the Watch daily, in one guise or another. But Gen Dis is big, and takes a while to load on my cell, so I don't usually come in here. But caam told me there was an e-e-fest thread yesterday. I didn't even look around until just now, so just seeing this thread. Sorry to hear all this, Cag. And sorry there are those like Menolly who have experience they can share.
All lies and jest
Still a man hears what he wants to hear
And disregards the rest -Paul Simon
Still a man hears what he wants to hear
And disregards the rest -Paul Simon
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aliantha
- blueberries on steroids
- Posts: 17865
- Joined: Tue Mar 05, 2002 7:50 pm
- Location: NOT opening up a restaurant in Santa Fe
Hang in there, Cag. We're all on your side.
And I vote for a second opinion, too, especially if you haven't evened out on this new protocol yet.
And I vote for a second opinion, too, especially if you haven't evened out on this new protocol yet.
EZ Board Survivor
"Dreaming isn't good for you unless you do the things it tells you to." -- Three Dog Night (via the GI)
https://www.hearth-myth.com/