How fast it all changed.

[rodeo65]

Following along with you, Rodeo. Our family is dealing with the same right now, stage 4 pancreatic adenocarcinoma. Like an earlier poster, the Whipple was performed successfully by a world-renowned surgeon and now in treatment by a cutting edge oncologist (who we selected based on his numerous clinical trials). Unfortunately, spots were found on the liver during a recent PET scan, and the team has told us their clinical trials aren’t an option now because of the current urgency to get chemo. So we have just started the “kitchen sink” approach of 12 cycles of Folfirinox... if this part is survivable, we would consider additional chemo regimens in the future but understand that it’s just buying time unless there’s an imminent immunotherapy breakthrough.

I wish you, DH, and your family all the time in the world. We are all crying, hoping, and loving right along with you.

I am sorry you are also dealing with this horrendous disease, but glad you have been able to find some treatment that might buy you some time. I will pray for you also.

Sadly, today wasn't as good. DH was having hallucinations with the morphine - bugs on the wall he said, so he refused a couple of doses. Of course that put his pain level back at about a 9. So, around 11 this morning, he agreed to try hydramorphone again. They've put butterfly inserts on each arm, one for I think it's haldol?? for his hiccups that are frequent and persistent and one on the other side for dilaudid. Since he has an anti-anxiety on board long acting overnight and as needed through the day, he felt he could withstand the pain med. So, today he basically slept. Which also means barely ate or drank.

I had to take DD to the doctor this afternoon. Our family practitioner is also overseeing his care through the hospice. He asked how the medication switch had gone and we got discussing everything. When I said we had originally hoped he might gain enough strength in hospice to come home and start treatment, he shook his head. Said the progression was far too fast and aggressive to allow that. Which has become obvious. It was four weeks yesterday. 29 days currently, since he walked into the ER thinking he might have to have an appendectomy. If only...

I then said he only had three months in hospice care, and again he started shaking his head. Said that with the speed it has taken over he thought maybe a couple of weeks. He is refusing visitors. He only wants me and sometimes the kids. It makes me so sad because when I told my dad that tonight he started crying and said they'd never see him again.

I noticed a lot of swelling in his feet yesterday, so we propped them on pillows. Today that seemed to be down a little. His belly is also very swollen. I mentioned that to the doctor and he said when the organs start shutting down, that happens in the body cavity. Swelling and fluid build up. On the other hand, his arms and legs have become so skinny. We took a few pictures with him last night but when I look at them he isn't really there. Maybe it's the pain meds, but his eyes were vacant.

My dad said we should call the funeral home to start some arrangements so I don't have to handle it all when he passes. He asked me what music he'd want. That did me in for the night.

 

[minnie56]

Just heartbreaking ...indeed how fast it has all changed and I so so wish for you all it was an appendectomy that ailed him. No words, just prayers and hugs that you’ll get through this with love of family and friends and your precious children. You’re in my thoughts ..

 

[mom2rtk]

I am sorry you are also dealing with this horrendous disease, but glad you have been able to find some treatment that might buy you some time. I will pray for you also.

Sadly, today wasn't as good. DH was having hallucinations with the morphine - bugs on the wall he said, so he refused a couple of doses. Of course that put his pain level back at about a 9. So, around 11 this morning, he agreed to try hydramorphone again. They've put butterfly inserts on each arm, one for I think it's haldol?? for his hiccups that are frequent and persistent and one on the other side for dilaudid. Since he has an anti-anxiety on board long acting overnight and as needed through the day, he felt he could withstand the pain med. So, today he basically slept. Which also means barely ate or drank.

I had to take DD to the doctor this afternoon. Our family practitioner is also overseeing his care through the hospice. He asked how the medication switch had gone and we got discussing everything. When I said we had originally hoped he might gain enough strength in hospice to come home and start treatment, he shook his head. Said the progression was far too fast and aggressive to allow that. Which has become obvious. It was four weeks yesterday. 29 days currently, since he walked into the ER thinking he might have to have an appendectomy. If only...

I then said he only had three months in hospice care, and again he started shaking his head. Said that with the speed it has taken over he thought maybe a couple of weeks. He is refusing visitors. He only wants me and sometimes the kids. It makes me so sad because when I told my dad that tonight he started crying and said they'd never see him again.

I noticed a lot of swelling in his feet yesterday, so we propped them on pillows. Today that seemed to be down a little. His belly is also very swollen. I mentioned that to the doctor and he said when the organs start shutting down, that happens in the body cavity. Swelling and fluid build up. On the other hand, his arms and legs have become so skinny. We took a few pictures with him last night but when I look at them he isn't really there. Maybe it's the pain meds, but his eyes were vacant.

My dad said we should call the funeral home to start some arrangements so I don't have to handle it all when he passes. He asked me what music he'd want. That did me in for the night.

 

[MamaBelle4]

I know it means very little, but I am sending you love, good thoughts and you remain in my prayers. I wish, truly I do, that there was something I could do for you.

 

[Planogirl]

I'm so sorry.

 

[Mickeynutty]

I know I speak for many when I say how much I admire you, Rodeo. You are so very strong. I’m praying for you and your family.

 

[Cruisin]

I have no experience to be able to relate to what you are going through.

I feel so sad that you and your family are having to deal with all of this.

I just wanted you to know that I've been thinking of you and your family .

 

[gillep]

You are all in my thoughts every single day .

 

[kimblebee]

This won’t touch the pain but I’m so, so sorry that you are dealing with this. You are showing great strength.

 

[Pea-n-Me]

Ugh, I'm sorry, Rodeo. I work with people who often get this kind of news, and it's never easy. I can understand why your husband wishes to limit visitors - he wants to preserve his dignity. He knows he's not himself as things are right now, and it's hard. I imagine it was pretty tough hearing what your doctor had to say, but in a way, it's a gift, because he's being honest, and he knows your husband, your family, and the situation better than most. It will help you keep your husband's goals of care in perspective, and maybe even help you with decisions, and thoughts, etc. I know they are grieving, too, but let your friends and family help you with things like funeral pre-planning and such. You don't need to cloud your head with such things right now. Just concentrate on being there with and for your husband. Let him see, when he does awaken and look up, the comfort of your face just being there for him. I remember once being in the hospital half out of it, and looking up to see my husband there; it was so comforting to me, just knowing I didn't have to worry. You can do that for him too, put everything else aside. We'll continue to be here offering as much support as we can for you. Stay strong.

 

[The Mystery Machine]

Continued hugs....

 

[LSUmiss]

I am sorry you are also dealing with this horrendous disease, but glad you have been able to find some treatment that might buy you some time. I will pray for you also.

Sadly, today wasn't as good. DH was having hallucinations with the morphine - bugs on the wall he said, so he refused a couple of doses. Of course that put his pain level back at about a 9. So, around 11 this morning, he agreed to try hydramorphone again. They've put butterfly inserts on each arm, one for I think it's haldol?? for his hiccups that are frequent and persistent and one on the other side for dilaudid. Since he has an anti-anxiety on board long acting overnight and as needed through the day, he felt he could withstand the pain med. So, today he basically slept. Which also means barely ate or drank.

I had to take DD to the doctor this afternoon. Our family practitioner is also overseeing his care through the hospice. He asked how the medication switch had gone and we got discussing everything. When I said we had originally hoped he might gain enough strength in hospice to come home and start treatment, he shook his head. Said the progression was far too fast and aggressive to allow that. Which has become obvious. It was four weeks yesterday. 29 days currently, since he walked into the ER thinking he might have to have an appendectomy. If only...

I then said he only had three months in hospice care, and again he started shaking his head. Said that with the speed it has taken over he thought maybe a couple of weeks. He is refusing visitors. He only wants me and sometimes the kids. It makes me so sad because when I told my dad that tonight he started crying and said they'd never see him again.

I noticed a lot of swelling in his feet yesterday, so we propped them on pillows. Today that seemed to be down a little. His belly is also very swollen. I mentioned that to the doctor and he said when the organs start shutting down, that happens in the body cavity. Swelling and fluid build up. On the other hand, his arms and legs have become so skinny. We took a few pictures with him last night but when I look at them he isn't really there. Maybe it's the pain meds, but his eyes were vacant.

My dad said we should call the funeral home to start some arrangements so I don't have to handle it all when he passes. He asked me what music he'd want. That did me in for the night.

Again I’m so sorry. I know all too well the decline you’re describing. It’s absolutely heartbreaking. Are they sure it was the morphine causing the hallucinations? I ask this b/c my dad had this too, but it was the toxins in his liver going to his brain since the cancer was shutting down his liver. I tell you this b/c we went through him refusing meds only to realize it wasn’t the meds, but his liver, so there was no need to refuse meds & be in pain.

 

[tarheelmjfan]

I am sorry you are also dealing with this horrendous disease, but glad you have been able to find some treatment that might buy you some time. I will pray for you also.

Sadly, today wasn't as good. DH was having hallucinations with the morphine - bugs on the wall he said, so he refused a couple of doses. Of course that put his pain level back at about a 9. So, around 11 this morning, he agreed to try hydramorphone again. They've put butterfly inserts on each arm, one for I think it's haldol?? for his hiccups that are frequent and persistent and one on the other side for dilaudid. Since he has an anti-anxiety on board long acting overnight and as needed through the day, he felt he could withstand the pain med. So, today he basically slept. Which also means barely ate or drank.

I had to take DD to the doctor this afternoon. Our family practitioner is also overseeing his care through the hospice. He asked how the medication switch had gone and we got discussing everything. When I said we had originally hoped he might gain enough strength in hospice to come home and start treatment, he shook his head. Said the progression was far too fast and aggressive to allow that. Which has become obvious. It was four weeks yesterday. 29 days currently, since he walked into the ER thinking he might have to have an appendectomy. If only...

I then said he only had three months in hospice care, and again he started shaking his head. Said that with the speed it has taken over he thought maybe a couple of weeks. He is refusing visitors. He only wants me and sometimes the kids. It makes me so sad because when I told my dad that tonight he started crying and said they'd never see him again.

I noticed a lot of swelling in his feet yesterday, so we propped them on pillows. Today that seemed to be down a little. His belly is also very swollen. I mentioned that to the doctor and he said when the organs start shutting down, that happens in the body cavity. Swelling and fluid build up. On the other hand, his arms and legs have become so skinny. We took a few pictures with him last night but when I look at them he isn't really there. Maybe it's the pain meds, but his eyes were vacant.

My dad said we should call the funeral home to start some arrangements so I don't have to handle it all when he passes. He asked me what music he'd want. That did me in for the night.

I'm so sorry to read this update. I totally understand your DH's unwillingness to take morphine. Many people, including me, can't tolerate it. I hope they find a pain medicine that works for him without major side effects. Hugs to all of you.

 

[Dentam]

I'm heartbroken for you all. Cancer is such an awful disease. I'm so sorry.

 

[tinatark]

Prayers you all get some more good days in these final days.

 

[Grom]

I’m so sorry to hear this. Your update breaks my heart... thinking of you and your loved ones.

Hugging you all.

 

[Grom]

Your strength is inspiring and I thank you for sharing your words here.

 

[lifesavacation]

Life can be so hard.

 

[pooh'smate]

Just wanted to let you know that I am praying for your family.

 

[nancygirl1]

Prayers just said for you, your children and your husband. Hold onto God, rest your eyes upon Him and find strength and comfort in His embrace...