phtreehuggr

Elaine,

I came back on here to get details from my posts to support a blog that I'm putting together. It's my personal journaling through my mom's diagnosis up until now. It's not written beautifully, but if it can help comfort one person it's worth writing it all out again!

So I'm just seeing this now! I cried when I read your post. My mom died 3 days after you posted. She died with my dad and me holding her hands, in her home.

You're absolutely right. I am gateful I had the opportunity to show her how much I love her through my care for her during that time. Somehow you just do it. When you're in the thick of it the weighty emotions don't really surface; it's not until you get a little downtime that it all creeps in.

Unfortunately we didn't get many smiles and laughs. My mom retreated within herself the last couple of months. She didn't have much to say. She only spoke out of necesscity. I think she was really struggling with accepting what was happening to her, and I also think she tried to prevent us from having many memories of her in that condition. It really bugged her when her mom went through pancreatic cancer –she didn't want to remember her mom that way.

I miss her a lot. That will never stop. The intensity of the sadness I feel is still the same as it always was, but the moments that the sadness hits is less frequent as time goes on.

How are you? How is your dad? Did they do treatments? I hope he made it! I've heard of others making it through it, even at stage IV, and they're still alive. That always gave me hope for my mama.

Katie

Elaine,

I came back on here to get details from my posts to support a blog that I'm putting together. It's my personal journaling through my mom's diagnosis up until now. It's not written beautifully, but if it can help comfort one person it's worth writing it all out again!

So I'm just seeing this now! I cried when I read your post. My mom died 3 days after you posted. She died with my dad and me holding her hands, in her home.

You're absolutely right. I am gateful I had the opportunity to show her how much I love her through my care for her during that time. Somehow you just do it. When you're in the thick of it the weighty emotions don't really surface; it's not until you get a little downtime that it all creeps in.

Unfortunately we didn't get many smiles and laughs. My mom retreated within herself the last couple of months. She didn't have much to say. She only spoke out of necesscity. I think she was really struggling with accepting what was happening to her, and I also think she tried to prevent us from having many memories of her in that condition. It really bugged her when her mom went through pancreatic cancer –she didn't want to remember her mom that way.

I miss her a lot. That will never stop. The intensity of the sadness I feel is still the same as it always was, but the moments that the sadness hits is less frequent as time goes on.

How are you? How is your dad? Did they do treatments? I hope he made it! I've heard of others making it through it, even at stage IV, and they're still alive. That always gave me hope for my mama.

Katie

Elaine,

I came back on here to get details from my posts to support a blog that I'm putting together. It's my personal journaling through my mom's diagnosis up until now. It's not written beautifully, but if it can help comfort one person it's worth writing it all out again!

So I'm just seeing this now! I cried when I read your post. My mom died 3 days after you posted. She died with my dad and me holding her hands, in her home.

You're absolutely right. I am gateful I had the opportunity to show her how much I love her through my care for her during that time. Somehow you just do it. When you're in the thick of it the weighty emotions don't really surface; it's not until you get a little downtime that it all creeps in.

Unfortunately we didn't get many smiles and laughs. My mom retreated within herself the last couple of months. She didn't have much to say. She only spoke out of necesscity. I think she was really struggling with accepting what was happening to her, and I also think she tried to prevent us from having many memories of her in that condition. It really bugged her when her mom went through pancreatic cancer –she didn't want to remember her mom that way.

I miss her a lot. That will never stop. The intensity of the sadness I feel is still the same as it always was, but the moments that the sadness hits is less frequent as time goes on.

How are you? How is your dad? Did they do treatments? I hope he made it! I've heard of others making it through it, even at stage IV, and they're still alive. That always gave me hope for my mama.

Katie

Well, I'm back, and this time not anonoymously because my mom no longer checks her phone, let alone the internet.

We don't know what's going on. The doctor in charge of the trial has said after her first treatment, that if it didn't work within the first 3 weeks (she said it would take 3-8 weeks), that my mom probably wouldn't make it to the next treatment. She did. She had her 2nd MK infusion last week, so she's now 5 weeks on the MK. Still no signs of improvement. When she saw her again at the 3 week mark, she said "days slash weeks."

Her abdomen is the size of – at least – a full term pregmant woman because the cancer has invaded her nodes in her belly and her bowels etc. are distended. Her fluids aren't be distributed as a result so her legs up to her waist is giant. I push the fluid up her legs to her nearest working nodes the best I can and then wrap them, but that doesn't seem to do much anymore. But her arms, chest, neck and face is…just skin stretched over her bones.

Her pain is managed. She has bouts of nausea. She's taking hemp oil regularly which my dad has done a ton of research on and is kind of our last ditch effort since there isn't anything else left to do. She is not strong enough for the interleukin. Thanks to the hemp oil she is taking down regular amounts of food again and isn't throwing up as frequently.

She sleeps all the time. I'm not sure if that's a result of the meds, the advanced cancer or the pain meds and hemp oil. It could just be that she's nearing the end, but it's hard to gague. She has taken to mumbling in her sleep a lot. Hard to wake. Has lucid moments still.

I don't know, I guess I just need to get it all out. There is nothing I can say except that this is the absolute worst possible thing to watch your loved one go through. I read somewhere on a different forum that at some point your wish will shift from her getting better, to finding peace, and I remember thinking when I read it that, that I'd never think that. But now as I sit here writing this, I think, if she isn't going to get better, I just want her to stop suffering.

Well, I'm back, and this time not anonoymously because my mom no longer checks her phone, let alone the internet.

We don't know what's going on. The doctor in charge of the trial has said after her first treatment, that if it didn't work within the first 3 weeks (she said it would take 3-8 weeks), that my mom probably wouldn't make it to the next treatment. She did. She had her 2nd MK infusion last week, so she's now 5 weeks on the MK. Still no signs of improvement. When she saw her again at the 3 week mark, she said "days slash weeks."

Her abdomen is the size of – at least – a full term pregmant woman because the cancer has invaded her nodes in her belly and her bowels etc. are distended. Her fluids aren't be distributed as a result so her legs up to her waist is giant. I push the fluid up her legs to her nearest working nodes the best I can and then wrap them, but that doesn't seem to do much anymore. But her arms, chest, neck and face is…just skin stretched over her bones.

Her pain is managed. She has bouts of nausea. She's taking hemp oil regularly which my dad has done a ton of research on and is kind of our last ditch effort since there isn't anything else left to do. She is not strong enough for the interleukin. Thanks to the hemp oil she is taking down regular amounts of food again and isn't throwing up as frequently.

She sleeps all the time. I'm not sure if that's a result of the meds, the advanced cancer or the pain meds and hemp oil. It could just be that she's nearing the end, but it's hard to gague. She has taken to mumbling in her sleep a lot. Hard to wake. Has lucid moments still.

I don't know, I guess I just need to get it all out. There is nothing I can say except that this is the absolute worst possible thing to watch your loved one go through. I read somewhere on a different forum that at some point your wish will shift from her getting better, to finding peace, and I remember thinking when I read it that, that I'd never think that. But now as I sit here writing this, I think, if she isn't going to get better, I just want her to stop suffering.

Well, I'm back, and this time not anonoymously because my mom no longer checks her phone, let alone the internet.

We don't know what's going on. The doctor in charge of the trial has said after her first treatment, that if it didn't work within the first 3 weeks (she said it would take 3-8 weeks), that my mom probably wouldn't make it to the next treatment. She did. She had her 2nd MK infusion last week, so she's now 5 weeks on the MK. Still no signs of improvement. When she saw her again at the 3 week mark, she said "days slash weeks."

Her abdomen is the size of – at least – a full term pregmant woman because the cancer has invaded her nodes in her belly and her bowels etc. are distended. Her fluids aren't be distributed as a result so her legs up to her waist is giant. I push the fluid up her legs to her nearest working nodes the best I can and then wrap them, but that doesn't seem to do much anymore. But her arms, chest, neck and face is…just skin stretched over her bones.

Her pain is managed. She has bouts of nausea. She's taking hemp oil regularly which my dad has done a ton of research on and is kind of our last ditch effort since there isn't anything else left to do. She is not strong enough for the interleukin. Thanks to the hemp oil she is taking down regular amounts of food again and isn't throwing up as frequently.

She sleeps all the time. I'm not sure if that's a result of the meds, the advanced cancer or the pain meds and hemp oil. It could just be that she's nearing the end, but it's hard to gague. She has taken to mumbling in her sleep a lot. Hard to wake. Has lucid moments still.

I don't know, I guess I just need to get it all out. There is nothing I can say except that this is the absolute worst possible thing to watch your loved one go through. I read somewhere on a different forum that at some point your wish will shift from her getting better, to finding peace, and I remember thinking when I read it that, that I'd never think that. But now as I sit here writing this, I think, if she isn't going to get better, I just want her to stop suffering.

Thank you, all!

So, she went to go get her tummy tapped to remove the fluid…and NO FLUID! What is it?! I have a call into her doctor to pick his brain.

Honestly, I don't feel like there is much time. My dad had me put a call into the doctor to inquire about MK-3475 vs interleukin. The latter seems like some pretty scary stuff. We don't know what to do! We don't know which to go with. My dad is losing it. Total mess. Mom is relying on him to make decisions and he's relying on input from me and I'm like…afjsdocjmsdlkcmsdop! I have NO IDEA.

This is the pits.

Thanks again, all!

Thank you, all!

So, she went to go get her tummy tapped to remove the fluid…and NO FLUID! What is it?! I have a call into her doctor to pick his brain.

Honestly, I don't feel like there is much time. My dad had me put a call into the doctor to inquire about MK-3475 vs interleukin. The latter seems like some pretty scary stuff. We don't know what to do! We don't know which to go with. My dad is losing it. Total mess. Mom is relying on him to make decisions and he's relying on input from me and I'm like…afjsdocjmsdlkcmsdop! I have NO IDEA.

This is the pits.

Thanks again, all!

Thank you, all!

So, she went to go get her tummy tapped to remove the fluid…and NO FLUID! What is it?! I have a call into her doctor to pick his brain.

Honestly, I don't feel like there is much time. My dad had me put a call into the doctor to inquire about MK-3475 vs interleukin. The latter seems like some pretty scary stuff. We don't know what to do! We don't know which to go with. My dad is losing it. Total mess. Mom is relying on him to make decisions and he's relying on input from me and I'm like…afjsdocjmsdlkcmsdop! I have NO IDEA.

This is the pits.

Thanks again, all!

Gotcha – didn't know that!

It's a bummer about the PET scans showing nothing though!

Gotcha – didn't know that!

It's a bummer about the PET scans showing nothing though!

Gotcha – didn't know that!

It's a bummer about the PET scans showing nothing though!

Sorry if I wasn't clear. I'm not pushing her to go natural. I've suggested she change her diet, done the research for her and just guide her. She's willingly doing it; she just doesn't like to do the reading on what's good for her and what's not. If I tell her, she'll go out and buy it.

We have all told her that she needs to feel comfortable with her decision – that she needs to go with what makes her feel good; her intuition – and she has decided to do both. She even says how she feels better than she has in YEARS simply because of changing her diet…heck, we could all stand to do some of the same, cancer or no cancer.

She has always been a huge sweet lover, but she's cut it out without any problems. It will undoubtedly help her in other areas too since she has really horrible arthritis in her hands. She's only 55. Which is a whole other animal. She was on Enbrel for her arthritis and then developed "superficial" bladder cancer (which is actually a documented side effect of the medication). We were cursing the Enbrel, but if it weren't for her taking that, developing symptoms from a lesion on her bladder and performing a CT scan, we would have never know she had metastatic melanoma!

Sorry if I wasn't clear. I'm not pushing her to go natural. I've suggested she change her diet, done the research for her and just guide her. She's willingly doing it; she just doesn't like to do the reading on what's good for her and what's not. If I tell her, she'll go out and buy it.

We have all told her that she needs to feel comfortable with her decision – that she needs to go with what makes her feel good; her intuition – and she has decided to do both. She even says how she feels better than she has in YEARS simply because of changing her diet…heck, we could all stand to do some of the same, cancer or no cancer.

She has always been a huge sweet lover, but she's cut it out without any problems. It will undoubtedly help her in other areas too since she has really horrible arthritis in her hands. She's only 55. Which is a whole other animal. She was on Enbrel for her arthritis and then developed "superficial" bladder cancer (which is actually a documented side effect of the medication). We were cursing the Enbrel, but if it weren't for her taking that, developing symptoms from a lesion on her bladder and performing a CT scan, we would have never know she had metastatic melanoma!

Sorry if I wasn't clear. I'm not pushing her to go natural. I've suggested she change her diet, done the research for her and just guide her. She's willingly doing it; she just doesn't like to do the reading on what's good for her and what's not. If I tell her, she'll go out and buy it.

We have all told her that she needs to feel comfortable with her decision – that she needs to go with what makes her feel good; her intuition – and she has decided to do both. She even says how she feels better than she has in YEARS simply because of changing her diet…heck, we could all stand to do some of the same, cancer or no cancer.

She has always been a huge sweet lover, but she's cut it out without any problems. It will undoubtedly help her in other areas too since she has really horrible arthritis in her hands. She's only 55. Which is a whole other animal. She was on Enbrel for her arthritis and then developed "superficial" bladder cancer (which is actually a documented side effect of the medication). We were cursing the Enbrel, but if it weren't for her taking that, developing symptoms from a lesion on her bladder and performing a CT scan, we would have never know she had metastatic melanoma!