OT: Pancreatic cancer - Goodbye to my father

[dailybuck777]

So sorry to hear the very difficult path your father faces. You did all you could. Nothing to do now but the best you can from this point on.

Very happy you found someone very competent doctor who will explain the situation in great detail.

 

[LafayetteBear]

Cincy, he walked two friggin' miles with you shortly after that major surgery. The dude is a beast. Major props to him. And continued prayers and best wishes to both of you, and your mom.

 

[mrtailgate]

I am somewhat fortunate that my work has allowed me to speak with some people in significant medical positions about my father, including recently a man who is the former chief of surgery at a hospital and head professor of surgery at a major university. We discussed my father at great length this past week, and he did provide me with an interesting alternative perspective on my quest for normalized CA19-9 and continued chemo. He mentioned that it is a difficult balance between trying to normalize the CA19-9/deaden the tumor through additional chemo/radiation and risking a bile duct leak or (insert term I didn't understand) whereby the body is unable to heal and recover from the Whipple surgery.

My father was a bit upset to learn 2 weeks ago what his next course of action will be. Because the resection margin at one spot was so thin, and because of the few cancer cells in one of the lymph nodes, he will now undergo chemo for a couple more months, followed by a break and then daily radiation for another month and a half. Even then, the oncologist told them his odds of survival are a coin flip.

My mother called me thinking I would be very upset to hear it was merely a coin flip. Of course, I already knew this...I had been trying for months to explain that if they didn't do more pre-surgery, this is what they'd be left with. My mother said, "I thought you told me that if these results came back right, pancreatic cancer is not what he would die from." I said yes...but that was if he achieved the things I said he must prior to surgery. She said "you mean normalize CA19-9, etc." I said yes. Then I told her that given he did not do that, negative resection margins and cancer cells in only 1 of 20 lymph nodes was the best case scenario, so of course I would be positive about that. But being positive in this situation means being happy and excited about the prospect of a coin flip rather than 1 in 100. I never did this, but it was so hard not to say "my God, I can't believe you now want to hear I have to say about what it would take to cure him when you treated me like the enemy prior to surgery, it's too late now." There's no point in making anyone feel worse now. He still has so much better of a chance than most of the people diagnosed with this disease, 85% of whom have no chance of cure. Those 85% would give anything for this coin flip. Regardless, another frustrating moment where the oncologist finally gives them some reality, but after it's too late to do what I suggested.

My father is now just over 3 weeks from having his gallbladder, duodenum, and part of his pancreas, stomach, and small intestine removed, with his bile duct rererouted, a 12 hour surgery in all. He's lost 30 pounds since this began (and at 6'0", 180 lbs of fitness at the start, didn't have it to lose) We walked at a brisk pace together for 2 miles today, and he's disappointed with how weak he is. He stopped taking pain medication from the surgery within 10 days because he didn't want to risk becoming addicted.

He told me last night as we were taking the dogs out at the end of the night after finishing the Washington series on History Channel that he was really glad my wife, son and I came to visit this weekend. That he needed this reminder of why his is about to go through what he is about to for the next few months, because he wants to spend more time with us.

He remains, and always will be the man I wish I could be, no matter how far short I always come.

My mother in law passed from PC four years ago and I think how valuable your insight would have been. I have learned so much from your posts. You really are inspiring and your information no doubt will have some value to someone on this board at some time. I know we will likely never meet, but I’d certainly like to shake your hand and thank you for sharing this most difficult journey. I remain hopeful that you continue to get good news moving forward. Thank you!

 

[flinter]

I am somewhat fortunate that my work has allowed me to speak with some people in significant medical positions about my father, including recently a man who is the former chief of surgery at a hospital and head professor of surgery at a major university. We discussed my father at great length this past week, and he did provide me with an interesting alternative perspective on my quest for normalized CA19-9 and continued chemo. He mentioned that it is a difficult balance between trying to normalize the CA19-9/deaden the tumor through additional chemo/radiation and risking a bile duct leak or (insert term I didn't understand) whereby the body is unable to heal and recover from the Whipple surgery.

My father was a bit upset to learn 2 weeks ago what his next course of action will be. Because the resection margin at one spot was so thin, and because of the few cancer cells in one of the lymph nodes, he will now undergo chemo for a couple more months, followed by a break and then daily radiation for another month and a half. Even then, the oncologist told them his odds of survival are a coin flip.

My mother called me thinking I would be very upset to hear it was merely a coin flip. Of course, I already knew this...I had been trying for months to explain that if they didn't do more pre-surgery, this is what they'd be left with. My mother said, "I thought you told me that if these results came back right, pancreatic cancer is not what he would die from." I said yes...but that was if he achieved the things I said he must prior to surgery. She said "you mean normalize CA19-9, etc." I said yes. Then I told her that given he did not do that, negative resection margins and cancer cells in only 1 of 20 lymph nodes was the best case scenario, so of course I would be positive about that. But being positive in this situation means being happy and excited about the prospect of a coin flip rather than 1 in 100. I never did this, but it was so hard not to say "my God, I can't believe you now want to hear I have to say about what it would take to cure him when you treated me like the enemy prior to surgery, it's too late now." There's no point in making anyone feel worse now. He still has so much better of a chance than most of the people diagnosed with this disease, 85% of whom have no chance of cure. Those 85% would give anything for this coin flip. Regardless, another frustrating moment where the oncologist finally gives them some reality, but after it's too late to do what I suggested.

My father is now just over 3 weeks from having his gallbladder, duodenum, and part of his pancreas, stomach, and small intestine removed, with his bile duct rererouted, a 12 hour surgery in all. He's lost 30 pounds since this began (and at 6'0", 180 lbs of fitness at the start, didn't have it to lose) We walked at a brisk pace together for 2 miles today, and he's disappointed with how weak he is. He stopped taking pain medication from the surgery within 10 days because he didn't want to risk becoming addicted.

He told me last night as we were taking the dogs out at the end of the night after finishing the Washington series on History Channel that he was really glad my wife, son and I came to visit this weekend. That he needed this reminder of why his is about to go through what he is about to for the next few months, because he wants to spend more time with us.

He remains, and always will be the man I wish I could be, no matter how far short I always come.

WBCincy-sorry I haven't responded sooner as I have had some health issues going on, as well.
Being a counselor working with cancer patient has allowed me to observe some interesting phenomena.
Many patients have few places to go with expressing how they feel and feeling safe about doing so. That is why so many folks facing a serious illness or other major disruption to their lives lash out at the people to whom they feel the closest, to whom whose relationship is the strongest. You obviously have a very strong relationship with your Dad-I give you a lot of props for continuing to be his go-to guy in terms of him being able to let his feelings fly. Well done by you as your Dad making the comment re you and your family visiting.
My Stepfather with whom I was very close became angry with me once when I questioned the competency of his primary care physician. Fred was a very loyal man and when he had a good relationship with someone, don't get in the way of same. My Mother took me aside and agreed with me, not my method. She assured me that she would find a way to effect a change in doctors. She did and they both were able to find a wonderful internist who did wonders through his care of both of them.
That taught me a lot but I still had some lessons to learn-that is why doctors/nurses/dumb ass counselors like me (at times) don't take on their family and others close to them as patients/clients. I tried to have a talk with my Mother about switching Fred to Hospice because of quality of life concerns. My mother informed me that for Fred, quality of life meant waking up each morning and seeing/being with her. Truer words were never spoken!
Cincy, please don't think I am trying to be some sort of know it all-I think I can feel some of the pain as you express to us what you're going through. Just know, as others have said very well, that you are a helluva son and that you have many here pulling for you and your parents and family. Take care!

 

[The Spin Meister]

We walked at a brisk pace together for 2 miles today,

As LafayetteBear said, that is an amazing accomplishment. With that kind of strength and determination I would give him a better chance than a coin flip.

And from I have read and what you have done, you are very much the man your father is. I am sure he is quiet proud to call you 'son'.

 

[MrDibbs]

wbcincy

When I think about all the problems that I tihnk my life has ... I look at this thread and I makes me realize how blessed I am. Most of your information is "greek" to me because I, nor my loved ones. are not in that situation. Thank you for sharing all. This is a guideline on how to deal with the worst diagnosis/situation imaginable.

God bless your dad, your mon, your entire family.

 

[dolster24]

Wbcincy, thought of your dad this evening. Hoping he is hanging in there. God bless!

 

[wbcincy]

Wbcincy, thought of your dad this evening. Hoping he is hanging in there. God bless!

Very kind of you my friend. He just finished his first of 6 new cycles of chemo (lasting a month each) this week. My father also officially retired this past Friday. Unfortunately, only my mother and grandmother who live with him could be there as the rest of us have to stay away due to his high risk of coronavirus complications. Obviously not an ideal time for that, but when is timing ever ideal.

We were supposed to be at Disney World this week for a family vacation. My how different everything was 11 months ago when we booked that trip. We had to cancel the trip a couple months ago, but I told him this week that Disney World decided it wasn’t worth being open if he couldn’t be there.

With respect to his retirement, it was the end of a great career. 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 same industry then for 40 years, from the ground up eventually becoming the VP of sales and marketing for a billion dollar company. 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 parts of the world as a result. Not bad for a gas station attendant or house painter. I hope his retirement is as long as he earned.

 

[mrtailgate]

Very kind of you my friend. He just finished his first of 6 new cycles of chemo (lasting a month each) this week. My father also officially retired this past Friday. Unfortunately, only my mother and grandmother who live with him could be there as the rest of us have to stay away due to his high risk of coronavirus complications. Obviously not an ideal time for that, but when is timing ever ideal.

We were supposed to be at Disney World this week for a family vacation. My how different everything was 11 months ago when we booked that trip. We had to cancel the trip a couple months ago, but I told him this week that Disney World decided it wasn’t worth being open if he couldn’t be there.

With respect to his retirement, it was the end of a great career. 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 same industry then for 40 years, from the ground up eventually becoming the VP of sales and marketing for a billion dollar company. 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 parts of the world as a result. Not bad for a gas station attendant or house painter. I hope his retirement is as long as he earned.

I re-read every post you write to take in the power and love contained therein and to make sure I don’t miss anything. You have painted such a wonderful picture and I chuckled a couple times reading it but still came away with the perspective of a man with purpose and determination. Blessings to your dad and your family!

 

[delcoLion]

Great story, wb. Hope things work out.

 

[Player2BNamedL8r]

Very kind of you my friend. He just finished his first of 6 new cycles of chemo (lasting a month each) this week. My father also officially retired this past Friday. Unfortunately, only my mother and grandmother who live with him could be there as the rest of us have to stay away due to his high risk of coronavirus complications. Obviously not an ideal time for that, but when is timing ever ideal.

We were supposed to be at Disney World this week for a family vacation. My how different everything was 11 months ago when we booked that trip. We had to cancel the trip a couple months ago, but I told him this week that Disney World decided it wasn’t worth being open if he couldn’t be there.

With respect to his retirement, it was the end of a great career. 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 same industry then for 40 years, from the ground up eventually becoming the VP of sales and marketing for a billion dollar company. 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 parts of the world as a result. Not bad for a gas station attendant or house painter. I hope his retirement is as long as he earned.

I’m quickly becoming an old fart myself, which is why I can ask without shame - can you imagine today’s youth pulling themselves up and turning themselves around with the success that your father did? What a great story...tell your Dad that a huge chunk of Nittany Nation is pulling for him!!

 

[Lemmus]

I am so pleased to hear about your father. The man is nothing if not consistent: a fighter through-and-through! And I'm thrilled for you that your stress level must be abating knowing that you'll have this man around for more good times.

As someone who had to write a resume this week for the first time in 30 years, this is just the kind of update I needed to read this morning. Tell your dad he's been a little ray of light for me. Thank you, Cincy--and Cincy Sr.

 

[delcoLion]

I’m quickly becoming an old fart myself, which is why I can ask without shame - can you imagine today’s youth pulling themselves up and turning themselves around with the success that your father did? What a great story...tell your Dad that a huge chunk of Nittany Nation is pulling for him!!

I’m ready to hit the magic 70 this year myself, but don’t sell young people short.

 

[LionJim]

I’m ready to hit the magic 70 this year myself, but don’t sell young people short.

Roger that. They’re tougher than one might think.

 

[Sooner Lion]

Very kind of you my friend. He just finished his first of 6 new cycles of chemo (lasting a month each) this week. My father also officially retired this past Friday. Unfortunately, only my mother and grandmother who live with him could be there as the rest of us have to stay away due to his high risk of coronavirus complications. Obviously not an ideal time for that, but when is timing ever ideal.

We were supposed to be at Disney World this week for a family vacation. My how different everything was 11 months ago when we booked that trip. We had to cancel the trip a couple months ago, but I told him this week that Disney World decided it wasn’t worth being open if he couldn’t be there.

With respect to his retirement, it was the end of a great career. 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 same industry then for 40 years, from the ground up eventually becoming the VP of sales and marketing for a billion dollar company. 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 parts of the world as a result. Not bad for a gas station attendant or house painter. I hope his retirement is as long as he earned.

What a great story. Thanks for sharing. Live each day like it is the last day!

 

[dolster24]

Hey Wbcincy...just checking in to seen the family was doing...hope your dad is doing well! I think of him often.

 

[TheGLOV]

Hey Wbcincy...just checking in to seen the family was doing...hope your dad is doing well! I think of him often.

Indeed. We get so involved here about PSU football and all we tend to forget about the really important things. How is your dad doing??

 

[LafayetteBear]

Cincy: I'm posting to second Dolster and Glov in asking for an update on your dad. I asked about him recently in replying to your post on another thread (on the Test Board, of all places), but then couldn't remember later which thread it was.

I hope he is doing well.

 

[dailybuck777]

Webcincy, I was going to post soon, but others have bumped up this thread. In the course of a CT scan for my colon, a small cyst was discovered on my pancreas. Until, I got the results from a pancreas CT scan, I didn't know whether I had a dangerous cyst (typically main duct) or mostly benign (typically side branch). My cyst turned out to be benign and side branch, but it needs to be watched like colon polyps.

While awaiting the results of my pancreas CT scan, I boned up on pancreatic cancer and it is horrendous. Operations for some of the bad cases, with something like a 1 in 20 chance of death, can take 8-12 hours. There are major blood vessels in the pancreas and if a cancer attaches itself to one of those, you are in a whole heap of trouble. The pancreas is much more difficult to get to than the colon. So, you may be undergoing a very difficult period now and it may be very stressful to respond to the questions. If that is the case, I am sure that all of the posters here would understand.

One potential way I could possibly be of help is to mention that according to my oncology surgeon, the University of Pittsburgh has exceptional pancreatic cancer surgeons. My surgeon said that he was the only surgeon in my area of Ohio trained to do laparoscopic main duct surgery and that he trained at the University of Pittsburgh. I know you have been very thorough in checking out doctors, but maybe Univ of Pittsburgh may at some point in time be a viable option for your father.

 

[jayhimes]

Well, not the answer we hoped for. The second biopsy showed that it is cancer.

Prayers sent your way.

 

[Player2BNamedL8r]

Webcincy, I was going to post soon, but others have bumped up this thread. In the course of a CT scan for my colon, a small cyst was discovered on my pancreas. Until, I got the results from a pancreas CT scan, I didn't know whether I had a dangerous cyst (typically main duct) or mostly benign (typically side branch). My cyst turned out to be benign and side branch, but it needs to be watched like colon polyps.

While awaiting the results of my pancreas CT scan, I boned up on pancreatic cancer and it is horrendous. Operations for some of the bad cases, with something like a 1 in 20 chance of death, can take 8-12 hours. There are major blood vessels in the pancreas and if a cancer attaches itself to one of those, you are in a whole heap of trouble. The pancreas is much more difficult to get to than the colon. So, you may be undergoing a very difficult period now and it may be very stressful to respond to the questions. If that is the case, I am sure that all of the posters here would understand.

One potential way I could possibly be of help is to mention that according to my oncology surgeon, the University of Pittsburgh has exceptional pancreatic cancer surgeons. My surgeon said that he was the only surgeon in my area of Ohio trained to do laparoscopic main duct surgery and that he trained at the University of Pittsburgh. I know you have been very thorough in checking out doctors, but maybe Univ of Pittsburgh may at some point in time be a viable option for your father.

Best to you sir. I’m happy you received a positive diagnosis, and wish you continued health going forward. And yes, as much as we pick on Pitt around here, their cancer treatment is absolutely top notch. My dad is currently being treated there for lymphoma. He’s had tremendous care and (knock on wood so far) very successful treatments.

 

[mrtailgate]

Webcincy, I was going to post soon, but others have bumped up this thread. In the course of a CT scan for my colon, a small cyst was discovered on my pancreas. Until, I got the results from a pancreas CT scan, I didn't know whether I had a dangerous cyst (typically main duct) or mostly benign (typically side branch). My cyst turned out to be benign and side branch, but it needs to be watched like colon polyps.

While awaiting the results of my pancreas CT scan, I boned up on pancreatic cancer and it is horrendous. Operations for some of the bad cases, with something like a 1 in 20 chance of death, can take 8-12 hours. There are major blood vessels in the pancreas and if a cancer attaches itself to one of those, you are in a whole heap of trouble. The pancreas is much more difficult to get to than the colon. So, you may be undergoing a very difficult period now and it may be very stressful to respond to the questions. If that is the case, I am sure that all of the posters here would understand.

One potential way I could possibly be of help is to mention that according to my oncology surgeon, the University of Pittsburgh has exceptional pancreatic cancer surgeons. My surgeon said that he was the only surgeon in my area of Ohio trained to do laparoscopic main duct surgery and that he trained at the University of Pittsburgh. I know you have been very thorough in checking out doctors, but maybe Univ of Pittsburgh may at some point in time be a viable option for your father.

Thinking of you, Cincy, and everyone else. Lost my mother in law to it and my work colleague who took the buyout at the same time as me. He was probably 57 and was gone in a year. Didn’t get to enjoy any of his early retirement. Best wishes to all

 

[wbcincy]

All, thank you, as always for your concern. This can feel pretty lonely at times, and the idea that you all, though anonymous, continue to consider and care about my father truly means a lot to me. Other than through my wife, this has been the sole place I can download all my thoughts, concerns, and frustrations, and it has helped tremendously. So from the bottom of my heart, thank you.

Obviously the past few months have been insane, no matter you or your family's health. Of course this was the worst possible time to not be able to be around my dad. Knowing what the statistics are for this type of cancer, now more than you ever I wanted to be with him. But because his immune system is compromised (and white blood cell count in particular has been very low), we couldn't be around him. So I went months during this time without seeing him. I like to think I'm not at all racist, but if this doesn't go the right way for my father, I'll never forgive the Chinese government for what was lost.

So my father began his post-surgery treatment. As I mentioned before, the fact that they didn't tell him this treatment was required before surgery was enough to make me lose my mind. I was the bad guy for wanting him to do more treatment pre-surgery, meanwhile his own doctors planned to have him do exactly what I thought was needed, only post-surgery. Perhaps if they'd told him that upfront, he would've been more receptive to what I was reading about the best current treatments.

Regardless, he began a new chemo (gemcitabine). Initially, this was a cake walk compared to the FOLFIRINOX he was on before. But then he happened to be among the 5% of folks who develops severe hand and foot disease, whereby the chemo leaks out the capillaries and destroys the skin in the same way it poisons your insides. His hands and feet got so bad he could barely walk, his body covered in rash, andhe was exhausted and spending 20 hours a day in bed. His oncologist said it was as bad as he'd ever seen. I told him he looked like Antonio Brown with how his feet started looking, covered in blisters:

He had to stop treatment for a month in May because of this.

During May, I got to see him once. My brother works for a school and coaches an e-sports team. To help him out, I filed to seal record of a trespass conviction he had 20 years ago when he was young. I had to drive a few hours to do that, and my parents were on the way back. Notably, when at the court, my brother threw something away at the metal detector. Cop said "what was that." It was few metal objects that meant nothing. Then he pulled up a juell type capsule from a coat pocket. Cop says "what is that." Brother says "nicotine." Cop lets him through. Now, maybe thats just because I'm a high powered attorney (hold your laughter) and with him, but he let him through with it for unknown reasons. As expected when I asked my brother, it was weed. So, at the hearing for his expungement, he brought weed. Nothing but dumb luck has allowed me to remain undefeated (2-0) in defending him before Ohio's courts.

Anyway, I stopped to see my parents outside at their house on my way back. Both parents wore N-99 masks and we only visited outside, but it was good to see them.

A couple weekends ago, we went to visit them again since the weather was so perfect and we could visit outside the entire time. It was great to see them. My son was great about understanding he couldn't go hug them, which was also heartbreaking at the same time.

The week before we got there, my father go his new CA19-9 reading. As I've discussed before, the CA19-9 is a tumor marker. Among pancreatic cancer patients, it speaks volumes. Normal is under 37. Before chemo last fall my father was 3,200. At the time of surgery, he was 145 (because chemo had worked so well). So, in order to hope surgery removed it, you would like to see it normalized (under 37). At the start of April, post-surgery, his number was 44. It would be best if it were normal, but it had come down. We hoped by June it would be normal. Instead, the number he got was 50. So it went up. I was pretty devastated by that. A continuing elevated CA19-9 offers a terrible prognosis. If there weren't ongoing cancer, presumably the number would normalize below 37. Something above that says cancer is there and putting out the marker.

A week later, while I was visiting, his CA19-9 for the next week came in, and it was 41. That's almost normalized. From the studies I've read, what's important is that it normalized within 6 months. He still has a month to go from 41 to 37, so hopefully we're going to get there.

Right now he's still in the process of going through chemo and radiation (5 days a week) through the middle of July. After that, he's done. Then we just wait and see what happens. For me, if his CA19-9 isn't normal, I already know what's coming. His CT is clear as of June, but if the CA19-9 escalates quickly, I know what it means.

We rebooked our Disney World trip for next April. My dad wants to run the Star Wars half marathon while we're there. I'm in no shape to do that and don't know where I'll find the time, but I have no choice but to prepare for it. If he can, I need to shut my mouth and do it.

 

[TheGLOV]

All, thank you, as always for your concern. This can feel pretty lonely at times, and the idea that you all, though anonymous, continue to consider and care about my father truly means a lot to me. Other than through my wife, this has been the sole place I can download all my thoughts, concerns, and frustrations, and it has helped tremendously. So from the bottom of my heart, thank you.

Obviously the past few months have been insane, no matter you or your family's health. Of course this was the worst possible time to not be able to be around my dad. Knowing what the statistics are for this type of cancer, now more than you ever I wanted to be with him. But because his immune system is compromised (and white blood cell count in particular has been very low), we couldn't be around him. So I went months during this time without seeing him. I like to think I'm not at all racist, but if this doesn't go the right way for my father, I'll never forgive the Chinese government for what was lost.

So my father began his post-surgery treatment. As I mentioned before, the fact that they didn't tell him this treatment was required before surgery was enough to make me lose my mind. I was the bad guy for wanting him to do more treatment pre-surgery, meanwhile his own doctors planned to have him do exactly what I thought was needed, only post-surgery. Perhaps if they'd told him that upfront, he would've been more receptive to what I was reading about the best current treatments.

Regardless, he began a new chemo (gemcitabine). Initially, this was a cake walk compared to the FOLFIRINOX he was on before. But then he happened to be among the 5% of folks who develops severe hand and foot disease, whereby the chemo leaks out the capillaries and destroys the skin in the same way it poisons your insides. His hands and feet got so bad he could barely walk, his body covered in rash, andhe was exhausted and spending 20 hours a day in bed. His oncologist said it was as bad as he'd ever seen. I told him he looked like Antonio Brown with how his feet started looking, covered in blisters:

He had to stop treatment for a month in May because of this.

During May, I got to see him once. My brother works for a school and coaches an e-sports team. To help him out, I filed to seal record of a trespass conviction he had 20 years ago when he was young. I had to drive a few hours to do that, and my parents were on the way back. Notably, when at the court, my brother threw something away at the metal detector. Cop said "what was that." It was few metal objects that meant nothing. Then he pulled up a juell type capsule from a coat pocket. Cop says "what is that." Brother says "nicotine." Cop lets him through. Now, maybe thats just because I'm a high powered attorney (hold your laughter) and with him, but he let him through with it for unknown reasons. As expected when I asked my brother, it was weed. So, at the hearing for his expungement, he brought weed. Nothing but dumb luck has allowed me to remain undefeated (2-0) in defending him before Ohio's courts.

Anyway, I stopped to see my parents outside at their house on my way back. Both parents wore N-99 masks and we only visited outside, but it was good to see them.

A couple weekends ago, we went to visit them again since the weather was so perfect and we could visit outside the entire time. It was great to see them. My son was great about understanding he couldn't go hug them, which was also heartbreaking at the same time.

The week before we got there, my father go his new CA19-9 reading. As I've discussed before, the CA19-9 is a tumor marker. Among pancreatic cancer patients, it speaks volumes. Normal is under 37. Before chemo last fall my father was 3,200. At the time of surgery, he was 145 (because chemo had worked so well). So, in order to hope surgery removed it, you would like to see it normalized (under 37). At the start of April, post-surgery, his number was 44. It would be best if it were normal, but it had come down. We hoped by June it would be normal. Instead, the number he got was 50. So it went up. I was pretty devastated by that. A continuing elevated CA19-9 offers a terrible prognosis. If there weren't ongoing cancer, presumably the number would normalize below 37. Something above that says cancer is there and putting out the marker.

A week later, while I was visiting, his CA19-9 for the next week came in, and it was 41. That's almost normalized. From the studies I've read, what's important is that it normalized within 6 months. He still has a month to go from 41 to 37, so hopefully we're going to get there.

Right now he's still in the process of going through chemo and radiation (5 days a week) through the middle of July. After that, he's done. Then we just wait and see what happens. For me, if his CA19-9 isn't normal, I already know what's coming. His CT is clear as of June, but if the CA19-9 escalates quickly, I know what it means.

We rebooked our Disney World trip for next April. My dad wants to run the Star Wars half marathon while we're there. I'm in no shape to do that and don't know where I'll find the time, but I have no choice but to prepare for it. If he can, I need to shut my mouth and do it.

Whoa!

All I can say is that you are blessed and he is a fighter for sure; family great as well.

Keep on going. Prayers by the boat-load coming your way.

Tell him HE is my new hero wb.

 

[LionJim]

Made my day.

 

[MrDibbs]

Cincy, God bless your dad and mom, God bless you and your wife and family. Continued prayers.

 

[dolster24]

Thank you for the update! Many prayers to you and your family!

 

[The Spin Meister]

Cincy, wish we could do more than listen/read to help you. But good to know even that helps.

You've done amazing work so far and I am sure your father.....and the whole family...appreciate it.

 

[fairgambit]

cincy, I tried to think of something profound to say in response to your post, but words fail me. All I can offer is my thoughts and prayers for your dad, and your whole family.

 

[TheGLOV]

cincy, I tried to think of something profound to say in response to your post, but words fail me. All I can offer is my thoughts and prayers for your dad, and your whole family.

I struggled as well 'fair'.

Blown away I was after reading it.

 

[mrtailgate]

All, thank you, as always for your concern. This can feel pretty lonely at times, and the idea that you all, though anonymous, continue to consider and care about my father truly means a lot to me. Other than through my wife, this has been the sole place I can download all my thoughts, concerns, and frustrations, and it has helped tremendously. So from the bottom of my heart, thank you.

Obviously the past few months have been insane, no matter you or your family's health. Of course this was the worst possible time to not be able to be around my dad. Knowing what the statistics are for this type of cancer, now more than you ever I wanted to be with him. But because his immune system is compromised (and white blood cell count in particular has been very low), we couldn't be around him. So I went months during this time without seeing him. I like to think I'm not at all racist, but if this doesn't go the right way for my father, I'll never forgive the Chinese government for what was lost.

So my father began his post-surgery treatment. As I mentioned before, the fact that they didn't tell him this treatment was required before surgery was enough to make me lose my mind. I was the bad guy for wanting him to do more treatment pre-surgery, meanwhile his own doctors planned to have him do exactly what I thought was needed, only post-surgery. Perhaps if they'd told him that upfront, he would've been more receptive to what I was reading about the best current treatments.

Regardless, he began a new chemo (gemcitabine). Initially, this was a cake walk compared to the FOLFIRINOX he was on before. But then he happened to be among the 5% of folks who develops severe hand and foot disease, whereby the chemo leaks out the capillaries and destroys the skin in the same way it poisons your insides. His hands and feet got so bad he could barely walk, his body covered in rash, andhe was exhausted and spending 20 hours a day in bed. His oncologist said it was as bad as he'd ever seen. I told him he looked like Antonio Brown with how his feet started looking, covered in blisters:

He had to stop treatment for a month in May because of this.

During May, I got to see him once. My brother works for a school and coaches an e-sports team. To help him out, I filed to seal record of a trespass conviction he had 20 years ago when he was young. I had to drive a few hours to do that, and my parents were on the way back. Notably, when at the court, my brother threw something away at the metal detector. Cop said "what was that." It was few metal objects that meant nothing. Then he pulled up a juell type capsule from a coat pocket. Cop says "what is that." Brother says "nicotine." Cop lets him through. Now, maybe thats just because I'm a high powered attorney (hold your laughter) and with him, but he let him through with it for unknown reasons. As expected when I asked my brother, it was weed. So, at the hearing for his expungement, he brought weed. Nothing but dumb luck has allowed me to remain undefeated (2-0) in defending him before Ohio's courts.

Anyway, I stopped to see my parents outside at their house on my way back. Both parents wore N-99 masks and we only visited outside, but it was good to see them.

A couple weekends ago, we went to visit them again since the weather was so perfect and we could visit outside the entire time. It was great to see them. My son was great about understanding he couldn't go hug them, which was also heartbreaking at the same time.

The week before we got there, my father go his new CA19-9 reading. As I've discussed before, the CA19-9 is a tumor marker. Among pancreatic cancer patients, it speaks volumes. Normal is under 37. Before chemo last fall my father was 3,200. At the time of surgery, he was 145 (because chemo had worked so well). So, in order to hope surgery removed it, you would like to see it normalized (under 37). At the start of April, post-surgery, his number was 44. It would be best if it were normal, but it had come down. We hoped by June it would be normal. Instead, the number he got was 50. So it went up. I was pretty devastated by that. A continuing elevated CA19-9 offers a terrible prognosis. If there weren't ongoing cancer, presumably the number would normalize below 37. Something above that says cancer is there and putting out the marker.

A week later, while I was visiting, his CA19-9 for the next week came in, and it was 41. That's almost normalized. From the studies I've read, what's important is that it normalized within 6 months. He still has a month to go from 41 to 37, so hopefully we're going to get there.

Right now he's still in the process of going through chemo and radiation (5 days a week) through the middle of July. After that, he's done. Then we just wait and see what happens. For me, if his CA19-9 isn't normal, I already know what's coming. His CT is clear as of June, but if the CA19-9 escalates quickly, I know what it means.

We rebooked our Disney World trip for next April. My dad wants to run the Star Wars half marathon while we're there. I'm in no shape to do that and don't know where I'll find the time, but I have no choice but to prepare for it. If he can, I need to shut my mouth and do it.

You don’t realize how inspiring this story of your dedication, resolve, love, and caring is. There are people you would hope would be in the foxhole with you, and you certainly fit the bill.

Much respect to the fight your dad is waging. May he beat this monster!

 

[wbcincy]

An update on the rollercoaster of the past 6 weeks:

I mentioned in my previous post that my father’s CA19-9 tumor marker had gone from 44 in April, to 50 in early June, to 41 by mid June (needs to be under 37 to be normal).

Because of the hand and foot disease I described above, one of the drugs was removed from his chemo. That stopped that from recurring. But the exhaustion and constantly diminishing blood levels (red, white, platelets) caused them to also decrease the amount of chemo, and at times have to entirely skip his normal chemo treatments. He was able to continue having the daily radiation treatments, which also took their toll physically.

Then, in mid July he got another CA19-9 test. It increased to 74. I cannot find a study, and I’ve looked, that offers any kind of positive prognosis for someone who has a CA19-9 elevated that high 6 months after their Whipple surgery. What I was able to find, and what I passed along to my father to try to give him continuing hope, is that radiation can cause an elevated CA19-9 either by creating inflammation in the pancreas, or by killing cancer cells which release it as they die. Is that the likely cause? No. It’s much easier to find a thousand articles about how the elevated CA19-9 means it’s still there than to find the 2-3 that talk about inflammation causing a “false” elevation, But what else can I do but tell him there’s still hope, as long as there truly is. Even if it’s 1%, it’s something to hold onto, especially when he was pretty dejected, texting me “pretty depressing, all this misery to go backwards.” And of course I knew there’s no forward or backwards with this, just cured or not cured.

After that, a couple weeks later toward the end of July, he completed his chemo and radiation, and went in a week later for more bloodwork on a Friday morning. On his way home, they called to tell him they had scheduled an ultrasound for Saturday morning at 8 am because his liver number had become concerning. I’m already well aware that when pancreatic cancer spreads, the liver is the most likely first landing spot. I don’t know exactly what those numbers are, but it was enough to cause them to schedule a Saturday morning scan immediately. Combine that with his rising CA19-9, and I was pretty confident I knew what was happening. I’m not great at being an optimist to begin with, and I was running out of reasons for hope, despite what I’d told him.

He got his results from the liver ultrasound last week and they showed no issues. That was a relief, but ultrasounds also aren’t exactly the best imaging tech we have.

We hadn’t seen them since the 4th, so my wife, son, and I planned to visit this weekend to celebrate their anniversary and my birthday (the same date, so my poor parents never got to celebrate their anniversary when I was kid). My father was supposed to have a CT scan on 8/10, but because the liver numbers had been concerning, it got moved up to yesterday, with a meeting with his oncologist today.

I braced myself for what was to come, given the bad news of the past month. Then just after noon today I received this text: “CT Scan clear. CA 19-9 is: 31. I've officially graduated to survivor/surveillance mode.”

I don’t know how long I’ll live or what my life holds in store, but it’s difficult to imagine how I will ever feel greater joy or relief in any moment. It would take an illness in my son, and I don’t bother trying to imagine that.

I’m still realistic. I know what the odds remain that it’s truly gone and won’t come back. The test 3 or 6 months from now could turn this all back on it’s head. But for today, it is gone. For today, there is hope that he really did beat it, and that I’m not simply slowly saying goodbye to him every time we’re together. Today when we talk about things 3 years from now, it’s not with the underlying thought of “but that such a time would ever come.” Today I can finally believe that my father might still be with me for years to come. It’s been a grueling 11 months of mourning and sorrow where I came to think I’d never again have the privilege and carelessness of living in a world where I could believe my father would stay with me. Today I was given that gift. And I’ve never been more thankful for anything.

 

[dailybuck777]

An update on the rollercoaster of the past 6 weeks:

I mentioned in my previous post that my father’s CA19-9 tumor marker had gone from 44 in April, to 50 in early June, to 41 by mid June (needs to be under 37 to be normal).

Because if the hand and foot disease I described above, one of the drugs was removed from his chemo. That stopped that from recurring. But the exhaustion and constantly diminishing blood levels (red, white, platelets) causes them to also decrease, and at timeS have to skip, his normal chemo treatments. He was able to continue having the daily radiation treatments, which also took their toll physically.

Then, in mid July he got another CA19-9 test. It increased to 74. I cannot find a study, and I’ve looked, that offers any kind of positive prognosis for someone who has a CA19-9 6 months after their Whipple surgery. What I was able to find, and what I passed along to my father to try to give him continuing hope, is that radiation can cause an elevated CA19-9 either by creating inflammation in the pancreas, or by killing cancer cells which release it as they die. Is that the likely cause? No. It’s much easier to find a thousand articles about how the elevated CA19-9 means it’s back than to find the 2-3 that talk about inflammation causing a “false” elevation, But what else can I do but tell him there’s still hope, as long as there truly is. Even if it’s 1%, it’s something to hold onto, especially when he was pretty dejected, texting me “pretty depressing, all this misery to go backwards.” And of course I knew there’s no forward or backwards with this, just cured or not cured.

After that, a couple weeks later toward the end of July, he completed his chemo and radiation, and went in a week later for more bloodwork on a Friday morning. On his way home, they called to tell him they had scheduled an ultrasound for Saturday morning at 8 am because his liver number had become concerning. I’m already well aware that when pancreatic cancer spreads, the liver is the most likely first landing spot. I don’t know exactly what those numbers are, but it was enough to cause them to schedule a Saturday morning scan immediately. Combine that with his rising CA19-9, and I was pretty confident I knew what was happening. I’m not great at being an optimist to begin with, and I was running out of reasons for hope, despite what I’d told him.

He got his results from the liver ultrasound last week and they showed no issues. That was a relief, but ultrasounds also aren’t exactly the best imaging tech we have.

We hadn’t seen them since the 4th, so my wife, son, and I planned to visit this weekend to celebrate their anniversary and my birthday (the same date, so my poor parents never got to celebrate their anniversary when I was kid). My father was supposed to have a CT scan on 8/10, but because the liver numbers had been concerning, it got moved up to yesterday, with a meeting with his oncologist today.

I braved myself for what was to come, given the bad news of the past month. Then just after noon today I received this text: “CT Scan clear. CA 19-9 is: 31. I've officially graduated to survivor/surveillance mode.”

I don’t know how long I’ll live or what my life holds in store, but it’s difficult to imagine how I feel greater joy or relief in any moment.

I’m still realistic. I know what the odds remain that it’s truly gone and won’t come back. The test 3 or 6 months from now could turn this all back on it’s head. But for today, it is gone. For today, there is hope that he really did beat it, and that I’m not simply slowly saying goodbye to him every time we’re together. Today when we talk about things 3 years from now, it’s not with the underlying thought of “but that such a time would ever actually come.” Today I can finally believe that my father might still be with me for years to come. And it’s been a grueling 11 months of mourning and sorrow where I came to think I’d never again have the privilege And carelessness of living in a world where I could believe my father would stay with me. Today I was given that gift. And I’ve never been more thankful for anything.

Absolutely, wonderful news!! What a horrible trial you have gone through. I had what turned out to be a benign cyst on my pancreas show up on a colon ct scan, and I looked closely into pancreatic cancer and it is awful.

So glad you have more time with your father and for the great news.

 

[fairgambit]

An update on the rollercoaster of the past 6 weeks:

I mentioned in my previous post that my father’s CA19-9 tumor marker had gone from 44 in April, to 50 in early June, to 41 by mid June (needs to be under 37 to be normal).

Because if the hand and foot disease I described above, one of the drugs was removed from his chemo. That stopped that from recurring. But the exhaustion and constantly diminishing blood levels (red, white, platelets) causes them to also decrease, and at timeS have to skip, his normal chemo treatments. He was able to continue having the daily radiation treatments, which also took their toll physically.

Then, in mid July he got another CA19-9 test. It increased to 74. I cannot find a study, and I’ve looked, that offers any kind of positive prognosis for someone who has a CA19-9 6 months after their Whipple surgery. What I was able to find, and what I passed along to my father to try to give him continuing hope, is that radiation can cause an elevated CA19-9 either by creating inflammation in the pancreas, or by killing cancer cells which release it as they die. Is that the likely cause? No. It’s much easier to find a thousand articles about how the elevated CA19-9 means it’s back than to find the 2-3 that talk about inflammation causing a “false” elevation, But what else can I do but tell him there’s still hope, as long as there truly is. Even if it’s 1%, it’s something to hold onto, especially when he was pretty dejected, texting me “pretty depressing, all this misery to go backwards.” And of course I knew there’s no forward or backwards with this, just cured or not cured.

After that, a couple weeks later toward the end of July, he completed his chemo and radiation, and went in a week later for more bloodwork on a Friday morning. On his way home, they called to tell him they had scheduled an ultrasound for Saturday morning at 8 am because his liver number had become concerning. I’m already well aware that when pancreatic cancer spreads, the liver is the most likely first landing spot. I don’t know exactly what those numbers are, but it was enough to cause them to schedule a Saturday morning scan immediately. Combine that with his rising CA19-9, and I was pretty confident I knew what was happening. I’m not great at being an optimist to begin with, and I was running out of reasons for hope, despite what I’d told him.

He got his results from the liver ultrasound last week and they showed no issues. That was a relief, but ultrasounds also aren’t exactly the best imaging tech we have.

We hadn’t seen them since the 4th, so my wife, son, and I planned to visit this weekend to celebrate their anniversary and my birthday (the same date, so my poor parents never got to celebrate their anniversary when I was kid). My father was supposed to have a CT scan on 8/10, but because the liver numbers had been concerning, it got moved up to yesterday, with a meeting with his oncologist today.

I braved myself for what was to come, given the bad news of the past month. Then just after noon today I received this text: “CT Scan clear. CA 19-9 is: 31. I've officially graduated to survivor/surveillance mode.”

I don’t know how long I’ll live or what my life holds in store, but it’s difficult to imagine how I feel greater joy or relief in any moment.

I’m still realistic. I know what the odds remain that it’s truly gone and won’t come back. The test 3 or 6 months from now could turn this all back on it’s head. But for today, it is gone. For today, there is hope that he really did beat it, and that I’m not simply slowly saying goodbye to him every time we’re together. Today when we talk about things 3 years from now, it’s not with the underlying thought of “but that such a time would ever actually come.” Today I can finally believe that my father might still be with me for years to come. And it’s been a grueling 11 months of mourning and sorrow where I came to think I’d never again have the privilege And carelessness of living in a world where I could believe my father would stay with me. Today I was given that gift. And I’ve never been more thankful for anything.

After reading all your previous posts, I share your joy in reading this one. It is a beacon of hope for all who are battling against the odds. God Bless your father and your family.

 

[TheGLOV]

After reading all your previous posts, I share your joy in reading this one. It is a beacon of hope for all who are battling against the odds. God Bless your father and your family.

Indeed!

Very good to hear!!

 

[smiller229]

Tears of joy! Continued prayer for your family and father. Be strong for them!

 

[WestSideLion]

Really fantastic news, wbcincy!!! I’m so happy for your dad and family.

 

[Mixolydian]

I never met you or your father and likely never will, but I got tears in me eyes reading that post. I have somewhat of a sense of what your father has been through. Your open and honest words over the course of these 11 months have given me a better sense of what my own kids have been through. So happy for you and your family!

 

[LafayetteBear]

We rebooked our Disney World trip for next April. My dad wants to run the Star Wars half marathon while we're there. I'm in no shape to do that and don't know where I'll find the time, but I have no choice but to prepare for it. If he can, I need to shut my mouth and do it.

Holy shiat, Cincy. The dude is a beast three times over. I can't offer him, or you, enough props for hanging in there. Whenever I feel low, I find this thread and bring myself up to speed on what is happening with your dad. It always gives me a sense of perspective, and makes me feel better. Thanks for that, dude. Your dad is in my prayers, big time.

 

[Harrisburg Dave]

Thank you for your posts. Stories like yours give hope to some of us facing health issues.

God bless.