Really rough day today
I'll post more tomorrow if anyone is interested, but today was really tough. What should have been a routine sigmoidoscopy turned into an 8-hour ordeal. I've never seen a person in so much pain, even though he's had multiple kidney stones back in the pre-cancer days. It's now 11:30 pm and I'm really beat, but can't quite get to sleep yet, so I logged in here. It helps just to see your faces and know that all of you are in this too and we're all here for each other.
Despite what happened today, I still have this feeling of gratitude - most of all for John, for our families and friends, the doctors and medical staff, and all of you guys who log on here and try to support one another. Thoreau said something along the lines of "when it gets really dark you can see the stars."
My best to each of you who reads this,
Adrian
Comments
-
Adrian
Hi Adrian,
I'm awake still as Hawaii is 3 hours earlier than California. So sorry the day was so hard for both of you. I find it almost unbearable to see my loved ones in pain. I want to take it all away and I feel so helpless at times. John is so fortunate to have you and you to have him. I love your Thoreau quote..... there are many stars in our lives as well and they are truly shining right now.
Saying a prayer for you right now.
With aloha,
Kathleen0 -
Thanks, Kathleen! We'll takeKathleen808 said:Adrian
Hi Adrian,
I'm awake still as Hawaii is 3 hours earlier than California. So sorry the day was so hard for both of you. I find it almost unbearable to see my loved ones in pain. I want to take it all away and I feel so helpless at times. John is so fortunate to have you and you to have him. I love your Thoreau quote..... there are many stars in our lives as well and they are truly shining right now.
Saying a prayer for you right now.
With aloha,
Kathleen
Thanks, Kathleen! We'll take all the prayers we can get and pay them back in kind -
I think you and I are in the same boat as caregivers. Today I'm feeling like I should have been able to do more for him. I think they really screwed up, but I wasn't in the room when it was going on, and you know... Anyway, thanks for writing back so quickly - I hope things are going well for you and ****. He and John are the same age apparently...
Holding you both in the light,
Adrian0 -
Oh Adrian!
I am so sorry to hear this.
I'm up for my 2AM medication and blogging spell. I knew something was up for you guys yesterday and am so sorry to hear it went so bad.
I don't think there is anything that comes close to the kind of helplessness we feel when our loved ones are suffering unbearable pain.
Deep peace of the star-filled night to you...
Rob; in Van0 -
Adrian,robinvan said:Oh Adrian!
I am so sorry to hear this.
I'm up for my 2AM medication and blogging spell. I knew something was up for you guys yesterday and am so sorry to hear it went so bad.
I don't think there is anything that comes close to the kind of helplessness we feel when our loved ones are suffering unbearable pain.
Deep peace of the star-filled night to you...
Rob; in Van
From what I have
Adrian,
From what I have read in your posts, you are an excellent caregiver and John is lucky to have you. I know it's hard when you feel helpless to make everything better. It really is harder on you as a caregiver, but know you are making a difference for John, even when you don't think you are. I hope today is abetter day for the both of you.
Don0 -
So Very Sorry
So sorry that you are going through such an ordeal and that John was in so much pain. You having to watch him in pain has to be so emotionally tough on you and draining. I am praying that he gets better soon and both of you will have some comfort. Let us know how he is feeling today (and you too).
Kim0 -
Thank You All!
Dear Kathleen, Rob, Don, Gail, Kim, Sonia and Bill,
Thanks so much to each of you for writing. It really helps. Today is much better. The excruciating pain he had after the sig is gone and we're both feeling good about things.
The short story is that we live about 45 miles from our healthcare facility, and we were having a fierce storm in California yesterday. Trees were down on the freeway, we passed lots of accidents (one fatal) and it was hard to control the car in the gusty winds. We made two trips down and back. The amount of air the introduced to his intestines for the sigmoidoscopy put him in what he described as the worst pain he's ever been in. He's had several kidney stones and it was clear to me that this was much worse. I can't believe they would subject a person to that (part of it was to get 3 tissue samples from the anastomosis to biopsy) but I wasn't in the room when they did it. Next time, I will be. However we got it under control before we left in the evening.
We talked to his oncologist yesterday evening (she stopped by after hearing about his situation) about stopping the chemo which is so hard on him. She reminded us that we were only doing it to manage pain and now that the Fentanyl and MS Contin have brought the pain down, there's no reason to keep doing the chemo. It won't have an effect on slowing the disease. So we're both feeling good about that, and I asked her about the Dendritic Cell Immunotherapy I had been reading about and while she had heard of it, she didn't know much about it and promised to look into it and get back to us. I know it wouldn't do anything for his sacral tumor, but it could slow or even prevent the spread to other parts of his body. And, unlike almost every other cancer treatment, it's painless and has no side effects. go figure.
So we're feeling good. He was supposed to have chemo this coming Thursday, but since he's not, we can go to a concert on Friday night and enjoy ourselves.
Thanks for all your wonderful comments - it really helps - other people can empathize but you guys really know. Thank You.
with love,
Adrian
PS I posted a photo of us on top of Mt. Katahdin in Maine on my "expressions" page. During his first round of chemo in '07/08 he held onto the image of us climbing to the top of that mountain to get him through. Much to my surprise, two months after chemo ended we did just that! It was more exhilarating than words can express. (He grew the beard during chemo but shaved it off afterwards - one of the only people I know who got more hair during chemo)0 -
I hope you have a wonderfulAceSFO said:Thank You All!
Dear Kathleen, Rob, Don, Gail, Kim, Sonia and Bill,
Thanks so much to each of you for writing. It really helps. Today is much better. The excruciating pain he had after the sig is gone and we're both feeling good about things.
The short story is that we live about 45 miles from our healthcare facility, and we were having a fierce storm in California yesterday. Trees were down on the freeway, we passed lots of accidents (one fatal) and it was hard to control the car in the gusty winds. We made two trips down and back. The amount of air the introduced to his intestines for the sigmoidoscopy put him in what he described as the worst pain he's ever been in. He's had several kidney stones and it was clear to me that this was much worse. I can't believe they would subject a person to that (part of it was to get 3 tissue samples from the anastomosis to biopsy) but I wasn't in the room when they did it. Next time, I will be. However we got it under control before we left in the evening.
We talked to his oncologist yesterday evening (she stopped by after hearing about his situation) about stopping the chemo which is so hard on him. She reminded us that we were only doing it to manage pain and now that the Fentanyl and MS Contin have brought the pain down, there's no reason to keep doing the chemo. It won't have an effect on slowing the disease. So we're both feeling good about that, and I asked her about the Dendritic Cell Immunotherapy I had been reading about and while she had heard of it, she didn't know much about it and promised to look into it and get back to us. I know it wouldn't do anything for his sacral tumor, but it could slow or even prevent the spread to other parts of his body. And, unlike almost every other cancer treatment, it's painless and has no side effects. go figure.
So we're feeling good. He was supposed to have chemo this coming Thursday, but since he's not, we can go to a concert on Friday night and enjoy ourselves.
Thanks for all your wonderful comments - it really helps - other people can empathize but you guys really know. Thank You.
with love,
Adrian
PS I posted a photo of us on top of Mt. Katahdin in Maine on my "expressions" page. During his first round of chemo in '07/08 he held onto the image of us climbing to the top of that mountain to get him through. Much to my surprise, two months after chemo ended we did just that! It was more exhilarating than words can express. (He grew the beard during chemo but shaved it off afterwards - one of the only people I know who got more hair during chemo)
I hope you have a wonderful time at the concert. You are both lucky to have each other. Glad to hear today is a better day. Petrina0 -
I hope you have a wonderfulAceSFO said:Thank You All!
Dear Kathleen, Rob, Don, Gail, Kim, Sonia and Bill,
Thanks so much to each of you for writing. It really helps. Today is much better. The excruciating pain he had after the sig is gone and we're both feeling good about things.
The short story is that we live about 45 miles from our healthcare facility, and we were having a fierce storm in California yesterday. Trees were down on the freeway, we passed lots of accidents (one fatal) and it was hard to control the car in the gusty winds. We made two trips down and back. The amount of air the introduced to his intestines for the sigmoidoscopy put him in what he described as the worst pain he's ever been in. He's had several kidney stones and it was clear to me that this was much worse. I can't believe they would subject a person to that (part of it was to get 3 tissue samples from the anastomosis to biopsy) but I wasn't in the room when they did it. Next time, I will be. However we got it under control before we left in the evening.
We talked to his oncologist yesterday evening (she stopped by after hearing about his situation) about stopping the chemo which is so hard on him. She reminded us that we were only doing it to manage pain and now that the Fentanyl and MS Contin have brought the pain down, there's no reason to keep doing the chemo. It won't have an effect on slowing the disease. So we're both feeling good about that, and I asked her about the Dendritic Cell Immunotherapy I had been reading about and while she had heard of it, she didn't know much about it and promised to look into it and get back to us. I know it wouldn't do anything for his sacral tumor, but it could slow or even prevent the spread to other parts of his body. And, unlike almost every other cancer treatment, it's painless and has no side effects. go figure.
So we're feeling good. He was supposed to have chemo this coming Thursday, but since he's not, we can go to a concert on Friday night and enjoy ourselves.
Thanks for all your wonderful comments - it really helps - other people can empathize but you guys really know. Thank You.
with love,
Adrian
PS I posted a photo of us on top of Mt. Katahdin in Maine on my "expressions" page. During his first round of chemo in '07/08 he held onto the image of us climbing to the top of that mountain to get him through. Much to my surprise, two months after chemo ended we did just that! It was more exhilarating than words can express. (He grew the beard during chemo but shaved it off afterwards - one of the only people I know who got more hair during chemo)
I hope you have a wonderful time at the concert. You are both lucky to have each other. Glad to hear today is a better day. Petrina0 -
I hope you have a wonderfulAceSFO said:Thank You All!
Dear Kathleen, Rob, Don, Gail, Kim, Sonia and Bill,
Thanks so much to each of you for writing. It really helps. Today is much better. The excruciating pain he had after the sig is gone and we're both feeling good about things.
The short story is that we live about 45 miles from our healthcare facility, and we were having a fierce storm in California yesterday. Trees were down on the freeway, we passed lots of accidents (one fatal) and it was hard to control the car in the gusty winds. We made two trips down and back. The amount of air the introduced to his intestines for the sigmoidoscopy put him in what he described as the worst pain he's ever been in. He's had several kidney stones and it was clear to me that this was much worse. I can't believe they would subject a person to that (part of it was to get 3 tissue samples from the anastomosis to biopsy) but I wasn't in the room when they did it. Next time, I will be. However we got it under control before we left in the evening.
We talked to his oncologist yesterday evening (she stopped by after hearing about his situation) about stopping the chemo which is so hard on him. She reminded us that we were only doing it to manage pain and now that the Fentanyl and MS Contin have brought the pain down, there's no reason to keep doing the chemo. It won't have an effect on slowing the disease. So we're both feeling good about that, and I asked her about the Dendritic Cell Immunotherapy I had been reading about and while she had heard of it, she didn't know much about it and promised to look into it and get back to us. I know it wouldn't do anything for his sacral tumor, but it could slow or even prevent the spread to other parts of his body. And, unlike almost every other cancer treatment, it's painless and has no side effects. go figure.
So we're feeling good. He was supposed to have chemo this coming Thursday, but since he's not, we can go to a concert on Friday night and enjoy ourselves.
Thanks for all your wonderful comments - it really helps - other people can empathize but you guys really know. Thank You.
with love,
Adrian
PS I posted a photo of us on top of Mt. Katahdin in Maine on my "expressions" page. During his first round of chemo in '07/08 he held onto the image of us climbing to the top of that mountain to get him through. Much to my surprise, two months after chemo ended we did just that! It was more exhilarating than words can express. (He grew the beard during chemo but shaved it off afterwards - one of the only people I know who got more hair during chemo)
I hope you have a wonderful time at the concert. You are both lucky to have each other. Glad to hear today is a better day. Petrina0 -
I hope you have a wonderfulAceSFO said:Thank You All!
Dear Kathleen, Rob, Don, Gail, Kim, Sonia and Bill,
Thanks so much to each of you for writing. It really helps. Today is much better. The excruciating pain he had after the sig is gone and we're both feeling good about things.
The short story is that we live about 45 miles from our healthcare facility, and we were having a fierce storm in California yesterday. Trees were down on the freeway, we passed lots of accidents (one fatal) and it was hard to control the car in the gusty winds. We made two trips down and back. The amount of air the introduced to his intestines for the sigmoidoscopy put him in what he described as the worst pain he's ever been in. He's had several kidney stones and it was clear to me that this was much worse. I can't believe they would subject a person to that (part of it was to get 3 tissue samples from the anastomosis to biopsy) but I wasn't in the room when they did it. Next time, I will be. However we got it under control before we left in the evening.
We talked to his oncologist yesterday evening (she stopped by after hearing about his situation) about stopping the chemo which is so hard on him. She reminded us that we were only doing it to manage pain and now that the Fentanyl and MS Contin have brought the pain down, there's no reason to keep doing the chemo. It won't have an effect on slowing the disease. So we're both feeling good about that, and I asked her about the Dendritic Cell Immunotherapy I had been reading about and while she had heard of it, she didn't know much about it and promised to look into it and get back to us. I know it wouldn't do anything for his sacral tumor, but it could slow or even prevent the spread to other parts of his body. And, unlike almost every other cancer treatment, it's painless and has no side effects. go figure.
So we're feeling good. He was supposed to have chemo this coming Thursday, but since he's not, we can go to a concert on Friday night and enjoy ourselves.
Thanks for all your wonderful comments - it really helps - other people can empathize but you guys really know. Thank You.
with love,
Adrian
PS I posted a photo of us on top of Mt. Katahdin in Maine on my "expressions" page. During his first round of chemo in '07/08 he held onto the image of us climbing to the top of that mountain to get him through. Much to my surprise, two months after chemo ended we did just that! It was more exhilarating than words can express. (He grew the beard during chemo but shaved it off afterwards - one of the only people I know who got more hair during chemo)
I hope you have a wonderful time at the concert. You are both lucky to have each other. Glad to hear today is a better day. Petrina0 -
Adrian and John...
I'm praying that today is a much better day for both of you. It just broke my heart to think of the pain John endured. I know it must tear you apart, Adrian.
God bless you both, my friends,
Diane0 -
Thank you!dianetavegia said:Adrian and John...
I'm praying that today is a much better day for both of you. It just broke my heart to think of the pain John endured. I know it must tear you apart, Adrian.
God bless you both, my friends,
Diane
Dear Petrina, Sue and Diane,
Thanks for your kind responses! Today is much better and we're both feeling good about getting on with life! I hope today is a good one for each of you as well!
Warmly,
Adrian0 -
Hi AdrianAceSFO said:Thank you!
Dear Petrina, Sue and Diane,
Thanks for your kind responses! Today is much better and we're both feeling good about getting on with life! I hope today is a good one for each of you as well!
Warmly,
Adrian
Hi Adrian!
I'm sorry John had such a bad time. He sure is lucky to have such a wonderful partner by his side. Being a caregiver to someone you love, and to watch them go through all this, and I'm sure you feel helpless, but you are NOT. Just being there for John, and being supportive to him is what he needs. My husband had a bad day yesterday, I will write a post on it, because I think sometimes we really don't realize what the caregivers really go through! My prayers are with you and John. Keep us updated!
Your friend
karyn0 -
Hi AdrianAceSFO said:Thank you!
Dear Petrina, Sue and Diane,
Thanks for your kind responses! Today is much better and we're both feeling good about getting on with life! I hope today is a good one for each of you as well!
Warmly,
Adrian
Hi Adrian!
I'm sorry John had such a bad time. He sure is lucky to have such a wonderful partner by his side. Being a caregiver to someone you love, and to watch them go through all this, and I'm sure you feel helpless, but you are NOT. Just being there for John, and being supportive to him is what he needs. My husband had a bad day yesterday, I will write a post on it, because I think sometimes we really don't realize what the caregivers really go through! My prayers are with you and John. Keep us updated!
Your friend
karyn0 -
Hi AdrianAceSFO said:Thank you!
Dear Petrina, Sue and Diane,
Thanks for your kind responses! Today is much better and we're both feeling good about getting on with life! I hope today is a good one for each of you as well!
Warmly,
Adrian
Hi Adrian!
I'm sorry John had such a bad time. He sure is lucky to have such a wonderful partner by his side. Being a caregiver to someone you love, and to watch them go through all this, and I'm sure you feel helpless, but you are NOT. Just being there for John, and being supportive to him is what he needs. My husband had a bad day yesterday, I will write a post on it, because I think sometimes we really don't realize what the caregivers really go through! My prayers are with you and John. Keep us updated!
Your friend
karyn0 -
Hi AdrianAceSFO said:Thank you!
Dear Petrina, Sue and Diane,
Thanks for your kind responses! Today is much better and we're both feeling good about getting on with life! I hope today is a good one for each of you as well!
Warmly,
Adrian
Hi Adrian!
I'm sorry John had such a bad time. He sure is lucky to have such a wonderful partner by his side. Being a caregiver to someone you love, and to watch them go through all this, and I'm sure you feel helpless, but you are NOT. Just being there for John, and being supportive to him is what he needs. My husband had a bad day yesterday, I will write a post on it, because I think sometimes we really don't realize what the caregivers really go through! My prayers are with you and John. Keep us updated!
Your friend
karyn0
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