Really rough day today

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

AceSFO 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)

AceSFO 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)

AceSFO 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

AceSFO 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