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OT: Pancreatic cancer - Goodbye to my father

I wish I had better news. The follow-up blood work and CT scan confirmed that my father's cancer returned, both on the pancreas and lungs. He's been given a year to live.

I want to thank everyone again who took the time to read, respond, and offer your prayers to my father, my family, and me over the past 15 months. None of you know me and owe me nothing, but you were there for me throughout this nonetheless. I will always appreciate that.

Enjoy the time you have together. You've been a World Champion son just like I'm sure he is a World Champion Father. I know what a great Dad can be like, because I was lucky enough to have one.

God Bless both of you, and your entire family. You are all in my prayers.
 
Reviving an old thread to ask for prayers.

Since my last update, my father has been on chemo (FOLFIRINOX), and that has kept the cancer relatively well in check. The nodules on the lungs were growing (and more appearing), but quite slowly, and it had not reappeared anywhere else. That went on from Jan. 2021 until his recent scans in late June of this year. At that point the radiologist noted what he described as "whisps" through his lungs that he said would eventually harden into tumors. This meant an end was more definitively on the horizon, about 14-16 months they estimated with a switch to Gemcitabine for chemo since the Folfirinox had apparently stopped being effective.

Well, also in June my father started experiencing some pain in his side, around where the largest of the nodules was. He tried to convince himself it may just be a pulled muscle, but as the pain became more severe, he knew that wasn't the case. The pain then escalated at a dramatic pace. He went from taking a pain pill once every few days, to begging the doctor to ramp it up. In mid July I suggested to him that he should inquire about a nerve block to try to curb the pain. Unfortunately, and likely due to insurance, a series of tests had to be run to rule out other potential causes of the pain, because the doctors were surprised at how quickly his pain went from 0 to 9.

Finally, they agreed a nerve block was the best option, and he was scheduled to meet with....the wrong specialist. That specialist (who did pancreatic nerve blocks), had to advise that he needed to see a lung nerve block specialist. So a week passed before that got scheduled, and even then the procedure was scheduled for 2.5 weeks later. So now an additional month passes, and you can imagine my frustration. The level of opioids needed to keep him from being in excruciating pain has now rendered him a zombie. He sleeps 22 hours a day, and is barely coherent when he is awake. Despite that, his pain remains at a 5-7 constantly. Trying to get him to eat is therefore an enormous challenge. My mother has been as patient and caring of a spouse as one could ever be, and I'll always be grateful to her for how she's caring for him. She's as a strong of a woman as there is, and I'm just reminded of how much I respect her and why. As I mentioned in my previous log on this, there were times I was at odds with my parents over treatment, but nobody can question that she is demonstrating the type of love any person could only ever hope to experience. But my father is fading quickly, and he knows it. He asked me to start contacting end of life facilities, and was trying to give me things he would no longer need last weekend.

We are now a week away from him finally getting that nerve block, but I fear it may be too late. He had no weight to lose, yet has somehow lost 20 pounds since the pain issue began 2 months ago. Even if the nerve block is successful, we have to wean him off the opioids slowly, and try to get him strength back, and it may be that he's deteriorated too much.

So first, for me to vent. How the hell can I know he needs a nerve block in July, but it takes until mid-September for the doctors to agree and actually get it done? The cancer and disease progression itself wouldn't kill him for another year, but we might lose him this month because of pain and medication simply because a move couldn't be made faster. Also, do your research in these situations. They just send him for a nerve block. Ok, so what type? Neurolytic with alcohol, radiofrequency with thermal, cryoablation to freeze? None of this is told to the patient, a procedure is just scheduled. I would've personally preferred cryo based on the level of pain reduction the limited studies have shown and the length of time it lasts, but it's relatively new for pain management (typically its been used for shrinking tumors rather than damaging nerves). He will be getting the alcohol treatment, which is good enough, so I'm not too disappointed as I would've been if I learned it was just a drug to numb, which is much more temporary and we may not have even weaned him off the opioids before he was back in pain.

And now, for the prayers. Pray that my father can make it these next 6 days until his nerve block next Tuesday. Pray that the nerve block works, and he can be relieved of his pain. Pray that he can then regain his strength and still get to enjoy this last year of his life. And if not, pray for comfort to my father in his final days, and for mother and family as they deal with this.

I can't believe it's been 3 years. I've known multiple people who have been diagnosed and passed from this disease in that time (including one great Penn State fan in Mifflin County where I grew up). So I'm very appreciative of the additional time I got with my father. But I'm selfish, and I want that last year. Or at least the chance to talk to him again, because right now it's not him anymore, and this nerve block is the last chance to ever get that again. And of course, as always, thank you to all of you who took this journey with me, read my meandering rants and thoughts (as this post became, that I thought would be a paragraph), and have offered support for years.
 
So sorry to hear about your father's medical travails, Cincy. My sincere prayers for a successful nerve block and the lessening of his pain. Hope you can get him more time to spend with you, and that it is quality time. Personal family experience has taught me that more time is not necessarily a great thing if it is accompanied by serious pain.
 
Cincy.....sorry about this news. Keep pushing forward and perhaps the pain block will allow your father to be back to being himself. He greatly appreciates what you and the family are doing for him....even if he cannot say very well right now......there will be some minor bit of comfort for you and the family if the cancer does not slow down and your father passes that you did everything that you could do to help your father through this ordeal.

Lost my 53 year wife at the end of the year last year and although the hurt is still so real.......I do feel as though anything that could possibly have helped her, or anything that could have made things better we made sure that we did everything that we could for my wife.

You seem to be trying to do the same thing.

God bless you and your father.
 
Last edited:
Cincy, thanks for the update...as difficult as it is. Cancer is a scourge. So many lives and families damaged by it.

Presumably they've got your Dad on top-drawer pain meds while awaiting the nerve block. I was told by a hospital nurse a couple months ago that Fentanyl is now top of the line in that regard. Very powerful stuff.

All of you are in my prayers. In fact, one of my daughters is a cloistered sister at a Poor Clare monastery. I'll call in your Dad's situation to their Prayer Line and put the sisters on the case. I don't know if that will help, but it definitely won't hurt.
 
Cincy,
I’ll be thinking about your father and wishing for relief from his pain and suffering. I don’t know if this would be something your dad would try, but when I went through my treatments for lymphoma I got my medical MJ card. It helped with appetite and elevated my mood while having mild pain relief properties. Something to consider. A tele-health appointment over the phone might be a possibility for an appointment considering your father’s pain and fatigue if you choose to try it.
 
Cincy,
I’ll be thinking about your father and wishing for relief from his pain and suffering. I don’t know if this would be something your dad would try, but when I went through my treatments for lymphoma I got my medical MJ card. It helped with appetite and elevated my mood while having mild pain relief properties. Something to consider. A tele-health appointment over the phone might be a possibility for an appointment considering your father’s pain and fatigue if you choose to try it.

Thanks, he's had that card since early on in this with the chemo. Now its just consciousness impacting the ability to eat rather than appetite.

I hope you came out of the lymphoma treatments well.
 
Posted this on TOS, copying here for anyone interested that didn't migrate.

It's been a tough month. On Sept. 13, the morning the nerve block was finally to take place, after all that waiting and doing everything we could to get him there, the hospital called. The CT machine used for this procedure had stopped working and maintenance was being called. Rescheduled for September 28. Just cannot be possible... We knew we didn't have 2 more weeks, and were losing our minds. Finally, a nurse called around and found another hospital in Cincinnati that had a CT available on Sept. 15 for the procedure. So I went down to my parents place and took my dad in on the 15th for the procedure. When he came out, he told me his pain was now a 0. Obviously I was elated, we now just needed to taper him off of the opioids and hopefully start building back his strength. Then he told me the doctor told him this was just a temporary procedure that may only last a week or two, done to see if it would work, and that they would call tomorrow to see how he was and schedule the permanent procedure if it had worked. Once again, my head was exploding. Nobody had ever suggested this procedure was only temporary to learn if it would work first. Apparently because a small vial of the chemical used to do the permanent procedure costs $4k now (for unknown reasons, since it's alcohol and was very cheap to get historically), they didn't just do that one. Then he asked what our financial situation was, because there was no guarantee insurance would pay for it. I said that was irrelevant, but it was disturbing to think that matters for others out there when they facing this kind of pain. Unfortunately, the 0 pain didn't last long, and was a 3-4 by that evening and the next morning. An improvement, but not something that was going to allow us to taper the opioids.

But my head still wasn't done exploding. When the doctor called the next day, I answered with my father on speaker so that I could help answer questions. The doctor said he was surprised by the pain my father was experiencing, because he didn't see anything that should be causing it. Then he said the CT doesn't even show any tumors and he didn't see any. I immediately realized he didn't even know where the pain was coming from and he was looking at the pancreas, not the lungs. He did the block relating to the pancreas (celiac plexus) that we could have done by the other doctor weeks ago. He said he thought my father was describing a pain in his belly, rather than the lower right rib cage relating to a lung tumor. First of all, I assumed the chart would explain what he was there for with some specificity, rather than asking him just before it is done. Second, why are you asking the heavily drugged patient instead of the caretaker with him if you're going to do that? Just unfreakingbelievable. But, I thought, he was a 0 immediately after, so it must be right, even if it was an error. The doctor agreed, so we went ahead and scheduled the permanent procedure for Sept. 28. Another two weeks... We tried to be hopeful that at least his pain was less, and maybe we could get there.

A couple days before his procedure, he started having trouble breathing. He was already beyond where he could take deep breaths, and now it was getting worse, to the point he needed my help lifting his body under his arms when he breathed in to try to breathe deeper. It eventually got a little better, but not completely. I asked his oncologist if there was a steroid regime we could institute to try to help him get some strength back because of the breathing problems, and to assist with any inflammation he may have in his lungs (since he had that pretty bad last time he was on the gemcitabine chemo). The doctor asked how much he was taking now... I said none, you only prescribed it to take for the couple days following chemo. He said to start taking one of those pills a day for a few days to see how it would go. We did, but it didn't help much, and he started retaining fluid in his hands and feet.

September 28 finally came, and the procedure went well (he also found fluid on his lungs and drained about 24 ounces of fluid, so that can't have been helping his labored breathing). His pain has only been 1-2 ever since, which is great, at least we took that from him. We started the opioid taper that day. I asked his oncologist to put in a prescription for 5 mg oxycodone instead of the 10 mg he had now so we could taper more effectively. His oncologist said ok but in the meantime just go to one 10mg a day to taper... Again, wtf. He was only 110-150 mg a day. Taper to 10? Can you even look at his chart to see what he was on before you just say something? Read anything on opioid tapering, and you cannot go from 150 to 10 overnight, or you're going to get the severe withdrawal that his body certainly couldn't handle. So we had to just create our own taper plan based on what Mayo Clinic, Cleveland Clinic etc say is the right way to do it.

Unfortunately, my father was also eating less and less, even after the pain lessened. And he was not improving with the taper. Over the weekend, he seemed to be getting worse and weaker. He started needing my help to get up and walk at all, and even standing up was exhausting for him. He would cough when trying to drink and struggle to chew food. My mother kept attributing it to withdrawal or lack of food. Finally, I told her that every symptom he was now fit exactly with the end of life process, rather than withdrawal or any other explanation. His body had taken all it could after 3 years of chemo, cancer, and then this constant pain and heavy opioids, and it had started shutting down, there was no going back now. Then, yesterday morning he became delirious. He has had only very brief moments of lucidity since. I'll spare the details, but they're horrifying for those you love, as I'm sure any of you who have been through it know.

Hospice came today, they'll move a hospital bed into their house tomorrow. I've had three years to prepare, and yet it all feels so sudden. I don't want him to go, but the truth is that he already is, so now I just want it to end, for his sake and my mother's. We will just try to keep him as comfortable and calm as we can now.
 
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Posted this on TOS, copying here for anyone interested that didn't migrate.

It's been a tough month. On Sept. 13, the morning the nerve block was finally to take place, after all that waiting and doing everything we could to get him there, the hospital called. The CT machine used for this procedure had stopped working and maintenance was being called. Rescheduled for September 28. Just cannot be possible... We knew we didn't have 2 more weeks, and were losing our minds. Finally, a nurse called around and found another hospital in Cincinnati that had a CT available on Sept. 15 for the procedure. So I went down to my parents place and took my dad in on the 15th for the procedure. When he came out, he told me his pain was now a 0. Obviously I was elated, we now just needed to taper him off of the opioids and hopefully start building back his strength. Then he told me the doctor told him this was just a temporary procedure that may only last a week or two, done to see if it would work, and that they would call tomorrow to see how he was and schedule the permanent procedure if it had worked. Once again, my head was exploding. Nobody had ever suggested this procedure was only temporary to learn if it would work first. Apparently because a small vial of the chemical used to do the permanent procedure costs $4k now (for unknown reasons, since it's alcohol and was very cheap to get historically), they didn't just do that one. Then he asked what our financial situation was, because there was no guarantee insurance would pay for it. I said that was irrelevant, but it was disturbing to think that matters for others out there when they facing this kind of pain. Unfortunately, the 0 pain didn't last long, and was a 3-4 by that evening and the next morning. An improvement, but not something that was going to allow us to taper the opioids.

But my head still wasn't done exploding. When the doctor called the next day, I answered with my father on speaker so that I could help answer questions. The doctor said he was surprised by the pain my father was experiencing, because he didn't see anything that should be causing it. Then he said the CT doesn't even show any tumors and he didn't see any. I immediately realized he didn't even know where the pain was coming from and he was looking at the pancreas, not the lungs. He did the block relating to the pancreas (celiac plexus) that we could have done by the other doctor weeks ago. He said he thought my father was describing a pain in his belly, rather than the lower right rib cage relating to a lung tumor. First of all, I assumed the chart would explain what he was there for with some specificity, rather than asking him just before it is done. Second, why are you asking the heavily drugged patient instead of the caretaker with him if you're going to do that? Just unfreakingbelievable. But, I thought, he was a 0 immediately after, so it must be right, even if it was an error. The doctor agreed, so we went ahead and scheduled the permanent procedure for Sept. 28. Another two weeks... We tried to be hopeful that at least his pain was less, and maybe we could get there.

A couple days before his procedure, he started having trouble breathing. He was already beyond where he could take deep breaths, and now it was getting worse, to the point he needed my help lifting his body under his arms when he breathed in to try to breathe deeper. It eventually got a little better, but not completely. I asked his oncologist if there was a steroid regime we could institute to try to help him get some strength back because of the breathing problems, and to assist with any inflammation he may have in his lungs (since he had that pretty bad last time he was on the gemcitabine chemo). The doctor asked how much he was taking now... I said none, you only prescribed it to take for the couple days following chemo. He said to start taking one of those pills a day for a few days to see how it would go. We did, but it didn't help much, and he started retaining fluid in his hands and feet.

September 28 finally came, and the procedure went well (he also found fluid on his lungs and drained about 24 ounces of fluid, so that can't have been helping his labored breathing). His pain has only been 1-2 ever since, which is great, at least we took that from him. We started the opioid taper that day. I asked his oncologist to put in a prescription for 5 mg oxycodone instead of the 10 mg he had now so we could taper more effectively. His oncologist said ok but in the meantime just go to one 10mg a day to taper... Again, wtf. He was only 110-150 mg a day. Taper to 10? Can you even look at his chart to see what he was on before you just say something? Read anything on opioid tapering, and you cannot go from 150 to 10 overnight, or you're going to get the severe withdrawal that his body certainly couldn't handle. So we had to just create our own taper plan based on what Mayo Clinic, Cleveland Clinic etc say is the right way to do it.

Unfortunately, my father was also eating less and less, even after the pain lessened. And he was not improving with the taper. Over the weekend, he seemed to be getting worse and weaker. He started needing my help to get up and walk at all, and even standing up was exhausting for him. He would cough when trying to drink and struggle to chew food. My mother kept attributing it to withdrawal or lack of food. Finally, I told her that every symptom he was now fit exactly with the end of life process, rather than withdrawal or any other explanation. His body had taken all it could after 3 years of chemo, cancer, and then this constant pain and heavy opioids, and it had started shutting down, there was no going back now. Then, yesterday morning he became delirious. He has had only very brief moments of lucidity since. I'll spare the details, but they're horrifying for those you love, as I'm sure any of you who have been through it know.

Hospice came today, they'll move a hospital bed into their house tomorrow. I've had three years to prepare, and yet it all feels so sudden. I don't want him to go, but the truth is that he already is, so now I just want it to end, for his sake and my mother's. We will just try to keep him as comfortable and calm as we can now.
There comes a time to accept reality and let go. You have done all you could but now you need to accept that his life is ending. He has fought amazingly well but lingering on in pain does not serve him well. Give him his dignity and allow him to go peacefully.

Take solace in knowing you did all one could do. That you bought a couple years of time, of smiles and laughter, of memories that will strengthen your family. Time he greatly enjoyed and appreciated.

My mother passed over two years ago. Had a long and happy life in spite of many health challenges. But she suffered enough and her time was up. Hospice people are great for both the patient and family. They do an extraordinary job under difficult conditions. Allow them to help you through this process of acceptance. I am sure your father wants you to understand this.

Thanks for sharing all these difficult times. Sharing these may have helped you deal with it all but it also helped us all be better people.
 
Posted this on TOS, copying here for anyone interested that didn't migrate.

It's been a tough month. On Sept. 13, the morning the nerve block was finally to take place, after all that waiting and doing everything we could to get him there, the hospital called. The CT machine used for this procedure had stopped working and maintenance was being called. Rescheduled for September 28. Just cannot be possible... We knew we didn't have 2 more weeks, and were losing our minds. Finally, a nurse called around and found another hospital in Cincinnati that had a CT available on Sept. 15 for the procedure. So I went down to my parents place and took my dad in on the 15th for the procedure. When he came out, he told me his pain was now a 0. Obviously I was elated, we now just needed to taper him off of the opioids and hopefully start building back his strength. Then he told me the doctor told him this was just a temporary procedure that may only last a week or two, done to see if it would work, and that they would call tomorrow to see how he was and schedule the permanent procedure if it had worked. Once again, my head was exploding. Nobody had ever suggested this procedure was only temporary to learn if it would work first. Apparently because a small vial of the chemical used to do the permanent procedure costs $4k now (for unknown reasons, since it's alcohol and was very cheap to get historically), they didn't just do that one. Then he asked what our financial situation was, because there was no guarantee insurance would pay for it. I said that was irrelevant, but it was disturbing to think that matters for others out there when they facing this kind of pain. Unfortunately, the 0 pain didn't last long, and was a 3-4 by that evening and the next morning. An improvement, but not something that was going to allow us to taper the opioids.

But my head still wasn't done exploding. When the doctor called the next day, I answered with my father on speaker so that I could help answer questions. The doctor said he was surprised by the pain my father was experiencing, because he didn't see anything that should be causing it. Then he said the CT doesn't even show any tumors and he didn't see any. I immediately realized he didn't even know where the pain was coming from and he was looking at the pancreas, not the lungs. He did the block relating to the pancreas (celiac plexus) that we could have done by the other doctor weeks ago. He said he thought my father was describing a pain in his belly, rather than the lower right rib cage relating to a lung tumor. First of all, I assumed the chart would explain what he was there for with some specificity, rather than asking him just before it is done. Second, why are you asking the heavily drugged patient instead of the caretaker with him if you're going to do that? Just unfreakingbelievable. But, I thought, he was a 0 immediately after, so it must be right, even if it was an error. The doctor agreed, so we went ahead and scheduled the permanent procedure for Sept. 28. Another two weeks... We tried to be hopeful that at least his pain was less, and maybe we could get there.

A couple days before his procedure, he started having trouble breathing. He was already beyond where he could take deep breaths, and now it was getting worse, to the point he needed my help lifting his body under his arms when he breathed in to try to breathe deeper. It eventually got a little better, but not completely. I asked his oncologist if there was a steroid regime we could institute to try to help him get some strength back because of the breathing problems, and to assist with any inflammation he may have in his lungs (since he had that pretty bad last time he was on the gemcitabine chemo). The doctor asked how much he was taking now... I said none, you only prescribed it to take for the couple days following chemo. He said to start taking one of those pills a day for a few days to see how it would go. We did, but it didn't help much, and he started retaining fluid in his hands and feet.

September 28 finally came, and the procedure went well (he also found fluid on his lungs and drained about 24 ounces of fluid, so that can't have been helping his labored breathing). His pain has only been 1-2 ever since, which is great, at least we took that from him. We started the opioid taper that day. I asked his oncologist to put in a prescription for 5 mg oxycodone instead of the 10 mg he had now so we could taper more effectively. His oncologist said ok but in the meantime just go to one 10mg a day to taper... Again, wtf. He was only 110-150 mg a day. Taper to 10? Can you even look at his chart to see what he was on before you just say something? Read anything on opioid tapering, and you cannot go from 150 to 10 overnight, or you're going to get the severe withdrawal that his body certainly couldn't handle. So we had to just create our own taper plan based on what Mayo Clinic, Cleveland Clinic etc say is the right way to do it.

Unfortunately, my father was also eating less and less, even after the pain lessened. And he was not improving with the taper. Over the weekend, he seemed to be getting worse and weaker. He started needing my help to get up and walk at all, and even standing up was exhausting for him. He would cough when trying to drink and struggle to chew food. My mother kept attributing it to withdrawal or lack of food. Finally, I told her that every symptom he was now fit exactly with the end of life process, rather than withdrawal or any other explanation. His body had taken all it could after 3 years of chemo, cancer, and then this constant pain and heavy opioids, and it had started shutting down, there was no going back now. Then, yesterday morning he became delirious. He has had only very brief moments of lucidity since. I'll spare the details, but they're horrifying for those you love, as I'm sure any of you who have been through it know.

Hospice came today, they'll move a hospital bed into their house tomorrow. I've had three years to prepare, and yet it all feels so sudden. I don't want him to go, but the truth is that he already is, so now I just want it to end, for his sake and my mother's. We will just try to keep him as comfortable and calm as we can now.
I’m so sorry, WB.
 
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WB- while the time hasn't prepared you...at least you had the time. Both my father and daughter died suddenly and without warning. It has taken me years to come to terms with the inability to share the love that you have. As much as it sucks for you and your mom, being there for your parents is your utmost duty. You will instincts know what to do. Godspeed.
 
WB- while the time hasn't prepared you...at least you had the time. Both my father and daughter died suddenly and without warning. It has taken me years to come to terms with the inability to share the love that you have. As much as it sucks for you and your mom, being there for your parents is your utmost duty. You will instincts know what to do. Godspeed.
My mother is a former Catholic nun who is still exceptionally involved with her faith. If you can please give me either your dad's initials or if you can figure out how to message me his name, she will add him to The Poor Claire's global prayer chain. They are a cloistered nun group and I've asked for help from time to time and have found power and comfort. Will gladly add his name or all 3 of you if you choose. Bless you all.
 
Posted this on TOS, copying here for anyone interested that didn't migrate.

It's been a tough month. On Sept. 13, the morning the nerve block was finally to take place, after all that waiting and doing everything we could to get him there, the hospital called. The CT machine used for this procedure had stopped working and maintenance was being called. Rescheduled for September 28. Just cannot be possible... We knew we didn't have 2 more weeks, and were losing our minds. Finally, a nurse called around and found another hospital in Cincinnati that had a CT available on Sept. 15 for the procedure. So I went down to my parents place and took my dad in on the 15th for the procedure. When he came out, he told me his pain was now a 0. Obviously I was elated, we now just needed to taper him off of the opioids and hopefully start building back his strength. Then he told me the doctor told him this was just a temporary procedure that may only last a week or two, done to see if it would work, and that they would call tomorrow to see how he was and schedule the permanent procedure if it had worked. Once again, my head was exploding. Nobody had ever suggested this procedure was only temporary to learn if it would work first. Apparently because a small vial of the chemical used to do the permanent procedure costs $4k now (for unknown reasons, since it's alcohol and was very cheap to get historically), they didn't just do that one. Then he asked what our financial situation was, because there was no guarantee insurance would pay for it. I said that was irrelevant, but it was disturbing to think that matters for others out there when they facing this kind of pain. Unfortunately, the 0 pain didn't last long, and was a 3-4 by that evening and the next morning. An improvement, but not something that was going to allow us to taper the opioids.

But my head still wasn't done exploding. When the doctor called the next day, I answered with my father on speaker so that I could help answer questions. The doctor said he was surprised by the pain my father was experiencing, because he didn't see anything that should be causing it. Then he said the CT doesn't even show any tumors and he didn't see any. I immediately realized he didn't even know where the pain was coming from and he was looking at the pancreas, not the lungs. He did the block relating to the pancreas (celiac plexus) that we could have done by the other doctor weeks ago. He said he thought my father was describing a pain in his belly, rather than the lower right rib cage relating to a lung tumor. First of all, I assumed the chart would explain what he was there for with some specificity, rather than asking him just before it is done. Second, why are you asking the heavily drugged patient instead of the caretaker with him if you're going to do that? Just unfreakingbelievable. But, I thought, he was a 0 immediately after, so it must be right, even if it was an error. The doctor agreed, so we went ahead and scheduled the permanent procedure for Sept. 28. Another two weeks... We tried to be hopeful that at least his pain was less, and maybe we could get there.

A couple days before his procedure, he started having trouble breathing. He was already beyond where he could take deep breaths, and now it was getting worse, to the point he needed my help lifting his body under his arms when he breathed in to try to breathe deeper. It eventually got a little better, but not completely. I asked his oncologist if there was a steroid regime we could institute to try to help him get some strength back because of the breathing problems, and to assist with any inflammation he may have in his lungs (since he had that pretty bad last time he was on the gemcitabine chemo). The doctor asked how much he was taking now... I said none, you only prescribed it to take for the couple days following chemo. He said to start taking one of those pills a day for a few days to see how it would go. We did, but it didn't help much, and he started retaining fluid in his hands and feet.

September 28 finally came, and the procedure went well (he also found fluid on his lungs and drained about 24 ounces of fluid, so that can't have been helping his labored breathing). His pain has only been 1-2 ever since, which is great, at least we took that from him. We started the opioid taper that day. I asked his oncologist to put in a prescription for 5 mg oxycodone instead of the 10 mg he had now so we could taper more effectively. His oncologist said ok but in the meantime just go to one 10mg a day to taper... Again, wtf. He was only 110-150 mg a day. Taper to 10? Can you even look at his chart to see what he was on before you just say something? Read anything on opioid tapering, and you cannot go from 150 to 10 overnight, or you're going to get the severe withdrawal that his body certainly couldn't handle. So we had to just create our own taper plan based on what Mayo Clinic, Cleveland Clinic etc say is the right way to do it.

Unfortunately, my father was also eating less and less, even after the pain lessened. And he was not improving with the taper. Over the weekend, he seemed to be getting worse and weaker. He started needing my help to get up and walk at all, and even standing up was exhausting for him. He would cough when trying to drink and struggle to chew food. My mother kept attributing it to withdrawal or lack of food. Finally, I told her that every symptom he was now fit exactly with the end of life process, rather than withdrawal or any other explanation. His body had taken all it could after 3 years of chemo, cancer, and then this constant pain and heavy opioids, and it had started shutting down, there was no going back now. Then, yesterday morning he became delirious. He has had only very brief moments of lucidity since. I'll spare the details, but they're horrifying for those you love, as I'm sure any of you who have been through it know.

Hospice came today, they'll move a hospital bed into their house tomorrow. I've had three years to prepare, and yet it all feels so sudden. I don't want him to go, but the truth is that he already is, so now I just want it to end, for his sake and my mother's. We will just try to keep him as comfortable and calm as we can now.
Awful. That is hard to read let alone live through. I wish you and your family all the best and hope you can find comfort in the time you've had as well as all of the efforts you put forward in helping your father through this difficult time.
 
WB- while the time hasn't prepared you...at least you had the time. Both my father and daughter died suddenly and without warning. It has taken me years to come to terms with the inability to share the love that you have. As much as it sucks for you and your mom, being there for your parents is your utmost duty. You will instincts know what to do. Godspeed.
what a great comment, in a really difficult series of posts.......
 
Ughhh. We went through the same process with my mother-in-law last year. Nothing anyone says is adequate. Hopefully talking with us is therapeutic. Stay close with your family and God bless. And prayers to your family and father
 
There comes a time to accept reality and let go. You have done all you could but now you need to accept that his life is ending. He has fought amazingly well but lingering on in pain does not serve him well. Give him his dignity and allow him to go peacefully.

Take solace in knowing you did all one could do. That you bought a couple years of time, of smiles and laughter, of memories that will strengthen your family. Time he greatly enjoyed and appreciated.

My mother passed over two years ago. Had a long and happy life in spite of many health challenges. But she suffered enough and her time was up. Hospice people are great for both the patient and family. They do an extraordinary job under difficult conditions. Allow them to help you through this process of acceptance. I am sure your father wants you to understand this.

Thanks for sharing all these difficult times. Sharing these may have helped you deal with it all but it also helped us all be better people.
THIS ^^^^. Prayers up for you and your Dad, Cincy. You both more than fought the good fight.
 
Wbcincy,
Thank you for sharing. You’re a wonderful son. Wishing your family peace, comfort and love.
 
On the evening of October 9, 2022, my father finally passed away after this 3+ year battle I've chronicled here.

I'm fortunate that I was unaware how hospice works nowadays. I had no idea it was something that is generally done in the home, with nurses only checking in. So essentially, family members are left to be the hospice nurses. As you can imagine, that means it turns into a rather traumatic event for family members, having to see and do things you didn't imagine you ever would. I just did what needed to be done, always telling my father, to the extent he could understand it, that I was sorry if I wasn't good at this, trying to act like it was routine and speaking softly about it, and not to feel any shame, that I was happy to help him and nothing I could do would ever repay what he's done for me. I won't go into the details, but I was just so ignorant and naive about this final process. What an unspeakable week it's been. He would've been horrified to think I'd have to do for him what I did. Some things that will never leave me, some things I can't stop myself from thinking about now. And to any of you who have ever lost children or spouses, I don't know how you did it, or how you ever function again.

On Friday night when I was sitting alone with him, I started telling him a lot of things. That it was okay. That everyone would be okay. That we'd all be here for mom and she would never want for anything - she could live with us, vacation with us, anything she wanted, and that what he had given to us is what made that possible. That he'd done his job and we'd take it from here. He was almost entirely non-verbal at this point, but he asked for ice (ice chips, to create moisture in the mouth in those final days), and then was able to reach up and grab my shoulder to pull me in, and say, as best he could, three times "I love you, I love you, I love you." I told him I know he does, we all know, and we all love him too. I then stole a line from @LionJim and told him that anything that needed said had already been said. He asked for some more ice, I gave it to him, and then I left the room and wept as deeply as I ever have. I am again just retelling this. I told my wife about it. I told my mom I would someday text it to her, but I can't speak of it, because I could never begin to tell it without breaking down. It was so painful, but I'm also so glad we got to have that exchange, delirius as he was.

My oldest brother arrived Sunday afternoon. My middle brother was there, but of no value. By Sunday evening, the "death rattle" had set in. What a horrible thing. Me, of course, always trying to fix things, was demanding a prescription that would dry out the secretions. We got that, and we started administrating it, but it did little. My father was a man that dealt with phlegm all his life. You could hear him clearing it in the shower from across the house. Somehow that made it more cruel to hear this horrific sound. I would've given anything to clear it for him, but I could not. I did all I could, shifting what side he was on, etc. to try to ease it, but nothing was much help. On his back, even upright, he was struggle tremendously. We gave him his next round of medication, and turned him on his side. His breathing improved, and I was happy he seemed less distressed. But quickly that changed. Suddenly he was breathing much more slowly. It became clear this was the end. The gasping I did not expect. Nothing I've seen prepared me for this. The breaths got so far apart, became so labored. My oldest brother went to get my mom, knowing it was near. I told him again that it was okay, that we would take it from here and everyone was okay. I told him some other things about my love for him, and he didn't breathe again.
 
I know many people will speak of a deceased parent and say that person was "the best" parent ever. I am someone who is inherently cynical (though I think I'm merely realistic, which is exactly what a cynic would say), and not prone to hyperbole. Which I why I'm able to comfortably say those other people are wrong, because my father truly was.

I've mentioned my father's past in this thread, which I'll repeat here:
He admittedly misspent much of his youth, a spoiled doctor’s son who was expelled from Lock Haven HS and sent to military school, only to be kicked out of there for knocking out a teacher. The guidance counselor at Lock Haven told my grandparents not to expect him to ever be anything more than a gas station attendant or house painter.

He didn’t fair much better in college, being thrown out of Alfred University multiple times. One time while home from one of those expulsions, he was working at the Lock Haven paper mill, and an old timer asked him what his plans were. He said to spend a few months there and figure it out. The man told him he’d said the same thing 30 years ago. He quit that day and went back to school to finish that time.

He finished college and went off to Penn State for a graduate degree. There, as a bartender at the Sheraton, he met my mother who was waitressing, another Penn Stater with a young child from a brief marriage as a teenager. They fell in love, but were still leading a poor life. Then they found the Lord and their lives and paths were changed forever. My father adopted my oldest brother, and they then had my other brother and I.

He worked in the commercial and residential door industry then for 40 years, eventually becoming the VP of sales and marketing for a billion dollar company. He's one of only two people awarded the lifetime honorary member award with the Internal Door Association. Most importantly, he showed me the value of maintaining your integrity no matter what. He was looked up to and admired in his industry for those reasons. He was able to travel every corner of this country and many parts of the world as a result, achieving more than a million miles flown with multiple airlines. Not bad for a gas station attendant or house painter.

What really mattered to me though was that he was my best friend. And my hero. He was everything I want to be in a man in every way. From the type of husband he was to my mother, to the type of father he was to us, to the type of businessman he was. He was an aggressive fighter who backed down to no one, but I never heard him raise his voice or argue with my mom once. I remember as a child visiting friends' houses and hearing the way their parents talked to one another and being shocked, because I never heard that at my house. He honored my mother in every way, and insisted that everyone else did as well. He enjoyed a good drink, but I never saw him drunk. He enjoyed a good meal (and peanut butter cups, and snickers, and ice cream with chocolate syrup), but was always in incredibly good shape. He was always perfectly organized, perfectly groomed, perfectly fit.

One of my brothers and I both happened to marry into women from very difficult situations. My wife's mother is a borderline personality and bipolar, and who has actively rooted for bad things to happen to her for her entire life, because she wants her to be as miserable as her. Her father is a paranoid schizophrenic that created serious anxiety issues for her at a young age, and who is a constant stress and depressant. About a year into their relationship, the father of my brother's wife shot and killed her mother, then killed himself. She was 20 at the time, her sister was 12. My father became the de-facto father to all of them, filling the role of the stable, secure, loving father-figure none of them ever had. My wife ran multiple half-marathons with my father as he finally had the running partner none of his sons were. That once 12-year old sister of my brother's wife had my father walk her down the aisle at her wedding last September. So he wasn't just a father to us, he was also the father these other 3 women so badly needed.

There is no one in my life who I had more fun with than my dad. My mom would always say that nobody on earth enjoyed each other more than he and I did. We just enjoyed all of the exact same things so closely. And nobody laughed better than my dad. It was the type of deep, fall to the floor, can't breathe laughing that would make anyone else around laugh uncontrollably even if they had no idea what had started the laughter. His laughter is one of the things I will miss the most. I've never met anyone whose laugh was so contagious, so perfect.

I'm 40 years old, so maybe this is pathetic, but I still lived to make him proud. To impress him. Nothing made me feel better than to tell him about the things I'd done or was doing, and to hear him react and tell me how that made him feel. Maybe he was just appeasing me, but it worked. I think now often about how every time something happens where ordinarily I'd want to reach out to him, I won't have that anymore. Today, my wife texted me a picture of my 10-year old son in his cast (I came home for 2 days at the beginning of last week, and while we were playing catch in the front yard, he dove and broke his wrist...). He'd chosen the blue cast so it would be Penn State colors. When I got it, my mind immediately thought to send it to my dad. About a minute later my wife texted that she'd just thought she should send it to him before it hit her.

It's so hard right now to imagine how so much joy in my life can ever be replaced. He just added so much to everything that I love. Can any of those things ever be the same without him? They can't of course, they can still be great, but they'll never be the same. So I'll have to find other things which aren't attached to him, because those things will always be shadowed by the thought of how much better they'd be if he were still there. And I can't dwell on those. I have a responsibility to make my son's life as full of joy through me as mine was through him. I just wish so desperately he could've known my father for another couple decades. But when I'm busy feeling sorry for myself or him, I remind myself of my best friend who died of brain cancer at 15, or my mom's best friend who died of breast cancer at 38 with two daughters in 5th and 7th grade. They would have given anything to live to 71 and see their children grown.

As I finally got home last night, I sat and talked with my son a bit. Told him how we would never forget his "Pa," and that we'd often talk about him to remember him. Sometimes that would mean we laugh, and sometimes that would mean we cry, but that both emotions were okay. My wife had told me he didn't want to cry in front of me or my mom because he didn't want to make us more upset. His first reaction when my wife first told him that he had died was to ask if my mom was okay. And after I talked with him, he said that the thing that was most important to him is how thankful he is that the procedure last week worked so my dad wasn't in pain anymore when it happened. Even if I can't ever live up to my father's standard, my son appears well on his way.

I've said this on here before, and I will again, thank you so much to everyone who has followed along, offered encouragement and prayers, and shared in the sadness and joy along the way. Many would consider it stupid, but the ability to unload my thoughts and emotions on here with you all has meant a lot to me, and I'm forever grateful to you. You've got drinks on me should we ever meet.
 
Very sorry for your huge loss. Very glad you shared your father's amazing story. Truly inspiring. Your father will be remembered for a long time as will his contributions to your family. Both you and your father have a lot to be proud of.
 
WB- may your father rest in peace and your family recover from the journey you shared.

Love begets love, and that's what keeps us going. I was at a funeral for a close family friend today in Wilmington, DE. Former Marine and 20 year state trooper. Amazing success story and family man.

It rained like hell at the cemetery, but the Troopers who carried and guarded the casket didn't flinch. The Marines who played taps and folded the flag for the widow didn't wear any rain gear. Pure steel. He was buried not far from the Biden family plot at St. Joseph's on the Brandywine.

Despite the sadness and weather it was a wonderful day. While your story didn't have the pomp and circumstance, it is equally powerful. Your dad was with his family until his last breath. Our mortality is a mystery that we won't understand or appreciate until the end.

I've buried my dad and daughter, and euloized both of them and my maternal grandparents. We live to honor those who have left before us and lay the foundation for future generations.

Oddly, through the tragic loss of my daughter, I no longer fear death at all. In ways it has empowered me in that I now know that I can survive my greatest fear becoming reality. Make no mistake, it is a form of living hell, but it also is the natural cycle of life that at times doesn't follow the script.

My dad is so in my head that it sometimes feels like he is still alive. I too lived to make my dad proud, and that is exactly what you have done. Thank you for sharing your story with all of us. Godspeed.
 
I know many people will speak of a deceased parent and say that person was "the best" parent ever. I am someone who is inherently cynical (though I think I'm merely realistic, which is exactly what a cynic would say), and not prone to hyperbole. Which I why I'm able to comfortably say those other people are wrong, because my father truly was.

I've mentioned my father's past in this thread, which I'll repeat here:
He admittedly misspent much of his youth, a spoiled doctor’s son who was expelled from Lock Haven HS and sent to military school, only to be kicked out of there for knocking out a teacher. The guidance counselor at Lock Haven told my grandparents not to expect him to ever be anything more than a gas station attendant or house painter.

He didn’t fair much better in college, being thrown out of Alfred University multiple times. One time while home from one of those expulsions, he was working at the Lock Haven paper mill, and an old timer asked him what his plans were. He said to spend a few months there and figure it out. The man told him he’d said the same thing 30 years ago. He quit that day and went back to school to finish that time.

He finished college and went off to Penn State for a graduate degree. There, as a bartender at the Sheraton, he met my mother who was waitressing, another Penn Stater with a young child from a brief marriage as a teenager. They fell in love, but were still leading a poor life. Then they found the Lord and their lives and paths were changed forever. My father adopted my oldest brother, and they then had my other brother and I.

He worked in the commercial and residential door industry then for 40 years, eventually becoming the VP of sales and marketing for a billion dollar company. He's one of only two people awarded the lifetime honorary member award with the Internal Door Association. Most importantly, he showed me the value of maintaining your integrity no matter what. He was looked up to and admired in his industry for those reasons. He was able to travel every corner of this country and many parts of the world as a result, achieving more than a million miles flown with multiple airlines. Not bad for a gas station attendant or house painter.

What really mattered to me though was that he was my best friend. And my hero. He was everything I want to be in a man in every way. From the type of husband he was to my mother, to the type of father he was to us, to the type of businessman he was. He was an aggressive fighter who backed down to no one, but I never heard him raise his voice or argue with my mom once. I remember as a child visiting friends' houses and hearing the way their parents talked to one another and being shocked, because I never heard that at my house. He honored my mother in every way, and insisted that everyone else did as well. He enjoyed a good drink, but I never saw him drunk. He enjoyed a good meal (and peanut butter cups, and snickers, and ice cream with chocolate syrup), but was always in incredibly good shape. He was always perfectly organized, perfectly groomed, perfectly fit.

One of my brothers and I both happened to marry into women from very difficult situations. My wife's mother is a borderline personality and bipolar, and who has actively rooted for bad things to happen to her for her entire life, because she wants her to be as miserable as her. Her father is a paranoid schizophrenic that created serious anxiety issues for her at a young age, and who is a constant stress and depressant. About a year into their relationship, the father of my brother's wife shot and killed her mother, then killed himself. She was 20 at the time, her sister was 12. My father became the de-facto father to all of them, filling the role of the stable, secure, loving father-figure none of them ever had. My wife ran multiple half-marathons with my father as he finally had the running partner none of his sons were. That once 12-year old sister of my brother's wife had my father walk her down the aisle at her wedding last September. So he wasn't just a father to us, he was also the father these other 3 women so badly needed.

There is no one in my life who I had more fun with than my dad. My mom would always say that nobody on earth enjoyed each other more than he and I did. We just enjoyed all of the exact same things so closely. And nobody laughed better than my dad. It was the type of deep, fall to the floor, can't breathe laughing that would make anyone else around laugh uncontrollably even if they had no idea what had started the laughter. His laughter is one of the things I will miss the most. I've never met anyone whose laugh was so contagious, so perfect.

I'm 40 years old, so maybe this is pathetic, but I still lived to make him proud. To impress him. Nothing made me feel better than to tell him about the things I'd done or was doing, and to hear him react and tell me how that made him feel. Maybe he was just appeasing me, but it worked. I think now often about how every time something happens where ordinarily I'd want to reach out to him, I won't have that anymore. Today, my wife texted me a picture of my 10-year old son in his cast (I came home for 2 days at the beginning of last week, and while we were playing catch in the front yard, he dove and broke his wrist...). He'd chosen the blue cast so it would be Penn State colors. When I got it, my mind immediately thought to send it to my dad. About a minute later my wife texted that she'd just thought she should send it to him before it hit her.

It's so hard right now to imagine how so much joy in my life can ever be replaced. He just added so much to everything that I love. Can any of those things ever be the same without him? They can't of course, they can still be great, but they'll never be the same. So I'll have to find other things which aren't attached to him, because those things will always be shadowed by the thought of how much better they'd be if he were still there. And I can't dwell on those. I have a responsibility to make my son's life as full of joy through me as mine was through him. I just wish so desperately he could've known my father for another couple decades. But when I'm busy feeling sorry for myself or him, I remind myself of my best friend who died of brain cancer at 15, or my mom's best friend who died of breast cancer at 38 with two daughters in 5th and 7th grade. They would have given anything to live to 71 and see their children grown.

As I finally got home last night, I sat and talked with my son a bit. Told him how we would never forget his "Pa," and that we'd often talk about him to remember him. Sometimes that would mean we laugh, and sometimes that would mean we cry, but that both emotions were okay. My wife had told me he didn't want to cry in front of me or my mom because he didn't want to make us more upset. His first reaction when my wife first told him that he had died was to ask if my mom was okay. And after I talked with him, he said that the thing that was most important to him is how thankful he is that the procedure last week worked so my dad wasn't in pain anymore when it happened. Even if I can't ever live up to my father's standard, my son appears well on his way.

I've said this on here before, and I will again, thank you so much to everyone who has followed along, offered encouragement and prayers, and shared in the sadness and joy along the way. Many would consider it stupid, but the ability to unload my thoughts and emotions on here with you all has meant a lot to me, and I'm forever grateful to you. You've got drinks on me should we ever meet.
You seem to be a great son.

Your father left this world knowing that.

Im sure it was a great comfort.
 
If only. Unfortunately there were more posts after that first one in this thread.
Many years ago, I lost my mother suddenly. An acquaintance, not really a close friend, sent me a hand-written note, it is now over 50 years and I still have that note. He wrote, "remember to continue living your life as your mother would want". Substitute father and remember to enjoy the time you had together.
 
WB- may your father rest in peace and your family recover from the journey you shared.

Love begets love, and that's what keeps us going. I was at a funeral for a close family friend today in Wilmington, DE. Former Marine and 20 year state trooper. Amazing success story and family man.

It rained like hell at the cemetery, but the Troopers who carried and guarded the casket didn't flinch. The Marines who played taps and folded the flag for the widow didn't wear any rain gear. Pure steel. He was buried not far from the Biden family plot at St. Joseph's on the Brandywine.

Despite the sadness and weather it was a wonderful day. While your story didn't have the pomp and circumstance, it is equally powerful. Your dad was with his family until his last breath. Our mortality is a mystery that we won't understand or appreciate until the end.

I've buried my dad and daughter, and euloized both of them and my maternal grandparents. We live to honor those who have left before us and lay the foundation for future generations.

Oddly, through the tragic loss of my daughter, I no longer fear death at all. In ways it has empowered me in that I now know that I can survive my greatest fear becoming reality. Make no mistake, it is a form of living hell, but it also is the natural cycle of life that at times doesn't follow the script.

My dad is so in my head that it sometimes feels like he is still alive. I too lived to make my dad proud, and that is exactly what you have done. Thank you for sharing your story with all of us. Godspeed.
I have two sons, 32 and 30, that I love dearly and have tried to never back away from giving them all of my time that they deserve.

Thank you for sharing the details of your relationship with your father and the dear love you had and still have for him. It gives me something to aspire to.

God bless you.
 
Think about getting him seen at Sloan-Kettering in NYC. They usually have cutting edge trials and treatment abilities not available at local level.
 
Think about getting him seen at Sloan-Kettering in NYC. They usually have cutting edge trials and treatment abilities not available at local level.
Yes, my brother in law went to SK and it likely literally saved his life. We have really good doctors in the area but not like SK - and it was a local Dr here who recommended he go to SK. Good luck
 
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Many people on chemo use marijuana to deal with the nausea and provide an element of comfort.
 
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