Peanut misses his dad like crazy, but doesn't understand where his dad is. While we've had many conversations about heaven and God, he just can't grasp those abstract concepts.
Dad's in heaven. Where's heaven?
Heaven is a wonderful place in the sky. Can we go visit?
God is taking care of daddy now. Who is God?
God takes cares of us. No, my daddy takes care of us.
Dad is not sick anymore. He's all better in heaven. Can we go pick him up then?
Yes, I realize I don't have a strong religious background, but I try my best.
After having a variety of discussions with Peanut, none of which seemed to satisfy his mind or his heart, I think we finally came up with one that worked (at least for now).
Dad is always with us. Close your eyes. Can you see him? Peanut scrunched his eyes up tight and his whole face squished in concentration. Suddenly he broke into a big smile, "I can see him!"
Dad is always in your heart. Think about him. Can you feel him? Peanut put his hands over his heart and sighed, "I can feel him."
So now when Peanut gets to missing daddy, he closes his eyes and puts his hands over his heart and he reminds me, "Daddy is always with us."
S.
Sunday, December 30, 2012
Friday, December 28, 2012
Delays for Oma
Remember all those folks saying mom (Oma) would hopefully be having surgery in the days following Christmas? And how I was skeptical and thinking that the days following New Year's might be more realistic? Well, looks like it may be A LOT of days following New Year's.
The oncologist is still out of town. We've scheduled an appointment to see him for January 3rd. It seems as if no one will give us the final pathology results until we see him.
My brother called the OB/GYN oncologist on Wednesday morning like instructed, hoping to get a quick surgery date. Instead, we got an office appointment for January 9th. In speaking with him, it sounds like he is delaying things because he is still holding out hope of combining the two surgeries (the ovarian surgery and the pancreatic surgery).
The pancreatic surgeon wanted to see Oma on January 8th, but we then learned that he was the second choice for a surgeon as the first choice was originally out of the country. My brother called the first choice surgeon and made an appointment for January 15th, but she's on the cancellation list if something comes up sooner.
At this point, we'll be lucky if Oma gets into surgery the third week of January. Of course, I'm a little jaded, but figure I'd rather set my expectations low and be pleasantly surprised if things happen sooner, than if I set my expectations high and be disappointed if we run into delay after delay. At least there are appointments made. We're making progress, slow progress but progress.
The oncologist is still out of town. We've scheduled an appointment to see him for January 3rd. It seems as if no one will give us the final pathology results until we see him.
My brother called the OB/GYN oncologist on Wednesday morning like instructed, hoping to get a quick surgery date. Instead, we got an office appointment for January 9th. In speaking with him, it sounds like he is delaying things because he is still holding out hope of combining the two surgeries (the ovarian surgery and the pancreatic surgery).
The pancreatic surgeon wanted to see Oma on January 8th, but we then learned that he was the second choice for a surgeon as the first choice was originally out of the country. My brother called the first choice surgeon and made an appointment for January 15th, but she's on the cancellation list if something comes up sooner.
At this point, we'll be lucky if Oma gets into surgery the third week of January. Of course, I'm a little jaded, but figure I'd rather set my expectations low and be pleasantly surprised if things happen sooner, than if I set my expectations high and be disappointed if we run into delay after delay. At least there are appointments made. We're making progress, slow progress but progress.
Saturday, December 22, 2012
Missing him
Snuggled up in bed last night, Peanut's eyes welled up with tears. "I miss Daddy."
Me too, Nut. Me too.
Me too, Nut. Me too.
Friday, December 21, 2012
Mom/Oma is Home
Mom/Oma got discharged today and we got her settled in nicely back at home. We are to call a few different doctor offices come Wednesday and hopefully come up with a plan from there.
In the meantime, I hear there's a big holiday coming up. (Thanks to the kindness of others, there are actually presents under the tree. Heck, thanks to the kindness of others, there's actually a tree!)
S.
In the meantime, I hear there's a big holiday coming up. (Thanks to the kindness of others, there are actually presents under the tree. Heck, thanks to the kindness of others, there's actually a tree!)
S.
Thursday, December 20, 2012
Oma's Preliminary Biopsy is Benign!
Mom went for her endoscopic ultrasound today. The preliminary biopsy is benign! They took tissue samples from two spots on her pancreas and pathology folks looked at them right then and there. From what they saw, they were NOT cancerous! Now, those samples have to grow in the petri dishes or whatever for a few days, and final results won't be back for 3 or 4 days, but this is some pretty great news. (We actually aren't expecting to hear the final results until after Tuesday, with Christmas and all.)
So, what happens now? We have no idea. Obviously, she has this 4 cm THING in her pancreas that shouldn't be there. Does it come out? Do they just watch it? We're not sure.
And then there is still the issue of the mass on her ovary. We still haven't seen that last doctor, the OB/GYN. We've begun to question if he is real. Haha. We've joked that he's just an imaginary doctor. They keep telling us that he'll be in to see us. He's pretty much the only reason mom is still in the hospital. She'll get released tomorrow no matter what I think and the nurse just said that if we don't see the OB/GYN before she gets released, we can make an appointment to see him in his office. Uhg. I'm really hoping he makes an appearance. That was the whole point of getting admitted ... to get as much of this stuff done as quick as possible and not have to make appointments two months out.
Things are looking a little more manageable than they were two days ago. We still have things that need to be addressed, but as we tentatively cross the big looming pancreatic cancer off the top of the list, the rest seems like smaller workable chunks. Right now though, Queen Mom is demanding coffee and pie. Unless I head to the cafeteria and make a delivery immediately, there will be hell to pay. Her wish is my command. At least for the moment.
S.
Edited to add: The elusive OB/GYN came by at about 7:30 p.m. Now, to his credit, he's not just a run of the mill OB/GYN, he's an OB/GYN oncologist, and a very busy one at that. He's not really sure what the mass is on mom's ovary, but it doesn't matter, it needs to come out. He'd like to take out both ovaries and the mass all at the same time via a laparoscopic procedure. Then, as part of the procedure, the mass would go through some sort of freezing process and then be examined through a microscope. They would be able to tell right then and there if it was malignant or benign. Based on what they found, that would determine if the surgery was over or not. If it was benign, mom would be all done. She'd stay in the hospital one or two days and have about a week long recovery period. If they found cancerous cells though, they would slice her abdomen open and remove lining, lymph nodes and whatever else they needed to. She'd be in the hospital a week to ten days and her recovery time would be MUCH longer. There would also be a discussion of potential chemotherapy and/or radiation post-surgery. He wouldn't know until he got in there though. The OB/GYN would like to schedule surgery as early as next week. He also mentioned that he'd like to coordinate with the thoracic/abdominal surgeon to possibly do both surgeries (the ovarian surgery as well as the pancreatic surgery) within the same time period although he and I both realized this is a remote possibility. We are to call his office on Wednesday to see where things stand. (I'm guessing that realistically, things won't happen next week, but probably the week after.) In the meantime, Mom is all set to be released tomorrow.
So, what happens now? We have no idea. Obviously, she has this 4 cm THING in her pancreas that shouldn't be there. Does it come out? Do they just watch it? We're not sure.
And then there is still the issue of the mass on her ovary. We still haven't seen that last doctor, the OB/GYN. We've begun to question if he is real. Haha. We've joked that he's just an imaginary doctor. They keep telling us that he'll be in to see us. He's pretty much the only reason mom is still in the hospital. She'll get released tomorrow no matter what I think and the nurse just said that if we don't see the OB/GYN before she gets released, we can make an appointment to see him in his office. Uhg. I'm really hoping he makes an appearance. That was the whole point of getting admitted ... to get as much of this stuff done as quick as possible and not have to make appointments two months out.
Things are looking a little more manageable than they were two days ago. We still have things that need to be addressed, but as we tentatively cross the big looming pancreatic cancer off the top of the list, the rest seems like smaller workable chunks. Right now though, Queen Mom is demanding coffee and pie. Unless I head to the cafeteria and make a delivery immediately, there will be hell to pay. Her wish is my command. At least for the moment.
S.
Edited to add: The elusive OB/GYN came by at about 7:30 p.m. Now, to his credit, he's not just a run of the mill OB/GYN, he's an OB/GYN oncologist, and a very busy one at that. He's not really sure what the mass is on mom's ovary, but it doesn't matter, it needs to come out. He'd like to take out both ovaries and the mass all at the same time via a laparoscopic procedure. Then, as part of the procedure, the mass would go through some sort of freezing process and then be examined through a microscope. They would be able to tell right then and there if it was malignant or benign. Based on what they found, that would determine if the surgery was over or not. If it was benign, mom would be all done. She'd stay in the hospital one or two days and have about a week long recovery period. If they found cancerous cells though, they would slice her abdomen open and remove lining, lymph nodes and whatever else they needed to. She'd be in the hospital a week to ten days and her recovery time would be MUCH longer. There would also be a discussion of potential chemotherapy and/or radiation post-surgery. He wouldn't know until he got in there though. The OB/GYN would like to schedule surgery as early as next week. He also mentioned that he'd like to coordinate with the thoracic/abdominal surgeon to possibly do both surgeries (the ovarian surgery as well as the pancreatic surgery) within the same time period although he and I both realized this is a remote possibility. We are to call his office on Wednesday to see where things stand. (I'm guessing that realistically, things won't happen next week, but probably the week after.) In the meantime, Mom is all set to be released tomorrow.
Wednesday, December 19, 2012
Scans, Scans and More Scans
Last night's CT scan with contrast showed a "possible pancreatic neoplasm" and a "possible ovarian tumor." It stated that the 4 cm structure in the pancreas could also represent a "pseudocyst" rather than a mass. The structure on the ovary measured 3 X 5 X 3 cm.
The oncologist visited with mom bright and early this morning and my brother was present to ask questions and take notes. The plan to biopsy the pancreas via a fine needle aspiration was scrapped as I guess removing the needle runs the risk of potentially spreading the disease. Instead, an endoscopic ultrasound will be performed and a biopsy will be collected that way. A GI doctor would be in to discuss the procedure, which would hopefully take place today or tomorrow. A thoracic/abdominal surgeon would also be in to discuss potential pancreatic surgery. And finally, an OB/GYN would be in to discuss the mass on the ovary and how we would go about addressing that issue. More lab work would be collected, specifically to look at two cancer markers, but that would take several days to get back. Mom's case could potentially be turned over to the surgeon, depending on how test results come back. In some cases radiation and chemotherapy are needed before surgery, or sometimes after, or sometimes not at all. The oncologist is going out of town for two weeks, but has updated his partner about mom's case and so we can move forward if need be before he returns.
The hospitalist also came in and informed us that mom's case had the team of doctors perplexed. Mom isn't presenting the typical symptoms of someone with pancreatic cancer. But she isn't presenting the typical symptoms of someone with a "pseudocyst" either. Mom isn't presenting the typical symptoms of someone with ovarian cancer. But she isn't presenting the typical symptoms of someone with a cyst on her ovary either. Her medical history isn't consistent with these diagnoses either. So, they're all scratching their heads. There are a lot of potential scenarios and they are going down the list to eliminate things one by one. It is hard to answer questions about what is going to happen when we are not even sure what we are dealing with. Because the pancreas seems to be the most serious issue, I think that is why that is where all the attention is focusing on first. The endoscopic ultrasound was scheduled for today, but because of some miscommunication, mom had already eaten lunch (oops). Therefore, the procedure will now be conducted tomorrow.
Mom had to do yet another CT scan. This was a more detailed and localized CT (with and without contrast) specifically of the pancreas. It indicates that the "hypodense sharply marginated mass of the body of the pancreas" is 4 cm in diameter and does not obstruct the pancreatic duct. It states it could be a "cystic neoplasm or other cystic lesion." I'm not really sure how much more information that gave anybody.
The GI doctor came in and reviewed the endoscopic ultrasound procedure. The information he collects during his procedure will give the surgeon additional information to make necessary surgical decisions. He will also collect tissue samples for immediate preliminary biopsy review. The samples will then be sent to pathology, where we will have final pathology results in 3 or 4 days (or probably a bit longer with the Christmas holiday around the corner).
The thoracic/abdominal surgeon also visited with us. Because there is so little information available about what we are dealing with, we spoke in a lot of hypothetical terms. In all likelihood, this mass will need to be removed. It appears to be in a "good" location for removal, being in the middle of the pancreas, although if it's a little more to the right or to the left, that could change things. The pancreas is a very intense organ with lots of nerves and blood vessels and so surgery is a complicated matter. Sometimes, chemotherapy and radiation are required pre or post surgery. He would not be able to make any decisions until he was able to review the endoscopic ultrasound and see the biopsy results. If mom did in fact require surgery, he didn't anticipate that it would take place until after the first of the year.
Mom is comfortable. She complains of a burning in her upper stomach, right below where the ribs meet. She receives pain medication as needed and that seems to control things superbly. She is definitely not a fan of hospital food and has not missed an opportunity to let people know that. Other than that, things are good. Her spirits are good, her attitude is feisty and she's taking things as they come.
The oncologist visited with mom bright and early this morning and my brother was present to ask questions and take notes. The plan to biopsy the pancreas via a fine needle aspiration was scrapped as I guess removing the needle runs the risk of potentially spreading the disease. Instead, an endoscopic ultrasound will be performed and a biopsy will be collected that way. A GI doctor would be in to discuss the procedure, which would hopefully take place today or tomorrow. A thoracic/abdominal surgeon would also be in to discuss potential pancreatic surgery. And finally, an OB/GYN would be in to discuss the mass on the ovary and how we would go about addressing that issue. More lab work would be collected, specifically to look at two cancer markers, but that would take several days to get back. Mom's case could potentially be turned over to the surgeon, depending on how test results come back. In some cases radiation and chemotherapy are needed before surgery, or sometimes after, or sometimes not at all. The oncologist is going out of town for two weeks, but has updated his partner about mom's case and so we can move forward if need be before he returns.
The hospitalist also came in and informed us that mom's case had the team of doctors perplexed. Mom isn't presenting the typical symptoms of someone with pancreatic cancer. But she isn't presenting the typical symptoms of someone with a "pseudocyst" either. Mom isn't presenting the typical symptoms of someone with ovarian cancer. But she isn't presenting the typical symptoms of someone with a cyst on her ovary either. Her medical history isn't consistent with these diagnoses either. So, they're all scratching their heads. There are a lot of potential scenarios and they are going down the list to eliminate things one by one. It is hard to answer questions about what is going to happen when we are not even sure what we are dealing with. Because the pancreas seems to be the most serious issue, I think that is why that is where all the attention is focusing on first. The endoscopic ultrasound was scheduled for today, but because of some miscommunication, mom had already eaten lunch (oops). Therefore, the procedure will now be conducted tomorrow.
Mom had to do yet another CT scan. This was a more detailed and localized CT (with and without contrast) specifically of the pancreas. It indicates that the "hypodense sharply marginated mass of the body of the pancreas" is 4 cm in diameter and does not obstruct the pancreatic duct. It states it could be a "cystic neoplasm or other cystic lesion." I'm not really sure how much more information that gave anybody.
The GI doctor came in and reviewed the endoscopic ultrasound procedure. The information he collects during his procedure will give the surgeon additional information to make necessary surgical decisions. He will also collect tissue samples for immediate preliminary biopsy review. The samples will then be sent to pathology, where we will have final pathology results in 3 or 4 days (or probably a bit longer with the Christmas holiday around the corner).
The thoracic/abdominal surgeon also visited with us. Because there is so little information available about what we are dealing with, we spoke in a lot of hypothetical terms. In all likelihood, this mass will need to be removed. It appears to be in a "good" location for removal, being in the middle of the pancreas, although if it's a little more to the right or to the left, that could change things. The pancreas is a very intense organ with lots of nerves and blood vessels and so surgery is a complicated matter. Sometimes, chemotherapy and radiation are required pre or post surgery. He would not be able to make any decisions until he was able to review the endoscopic ultrasound and see the biopsy results. If mom did in fact require surgery, he didn't anticipate that it would take place until after the first of the year.
Mom is comfortable. She complains of a burning in her upper stomach, right below where the ribs meet. She receives pain medication as needed and that seems to control things superbly. She is definitely not a fan of hospital food and has not missed an opportunity to let people know that. Other than that, things are good. Her spirits are good, her attitude is feisty and she's taking things as they come.
Tuesday, December 18, 2012
Seriously?
Today my mom called me complaining of abdominal pain. Bad abdominal pain. I suggested she go to the Emergency Room, but she came up with every excuse in the book. What is it with people who don't want to get help? Gosh darn stubborn people in my life! I made a quick trip to her house and after a little bit of tough love, we were in the car and on our way.
Would you believe me if I told you we got the exact same room in the Emergency Room that E. was last in? What are the odds of THAT??? Oh yes, same nurse and everything. Blood work, a urine sample, a CT scan. My brother arrived and we settled in for what we figured would be a long wait. It wasn't long at all when the doctor returned and announced that the CT showed a 3.5 cm mass in her pancreas. Are you frickin' kidding me? If this wasn't happening right in front of me, I'm not sure I'd believe it.
Long story, short ... she was admitted to the hospital to get a jump start on things. A CT with contrast was completed tonight of the chest and abdomen. A biopsy will be done in the morning. A call was put in to the oncologist. With the holidays and vacations undoubtedly on the books, I'm sure we'll be running into delays after delays. I'm crossing my fingers we can get some sort of plan in place sooner rather than later. I function better with a plan. It makes me a little less crazy.
(Yes, she's on the oncology floor. Yes, I requested that she not be placed in E's same room. Yes, we saw lots of familiar nurses. Yes, it was very difficult. Yes, we continue on.)
S.
Would you believe me if I told you we got the exact same room in the Emergency Room that E. was last in? What are the odds of THAT??? Oh yes, same nurse and everything. Blood work, a urine sample, a CT scan. My brother arrived and we settled in for what we figured would be a long wait. It wasn't long at all when the doctor returned and announced that the CT showed a 3.5 cm mass in her pancreas. Are you frickin' kidding me? If this wasn't happening right in front of me, I'm not sure I'd believe it.
Long story, short ... she was admitted to the hospital to get a jump start on things. A CT with contrast was completed tonight of the chest and abdomen. A biopsy will be done in the morning. A call was put in to the oncologist. With the holidays and vacations undoubtedly on the books, I'm sure we'll be running into delays after delays. I'm crossing my fingers we can get some sort of plan in place sooner rather than later. I function better with a plan. It makes me a little less crazy.
(Yes, she's on the oncology floor. Yes, I requested that she not be placed in E's same room. Yes, we saw lots of familiar nurses. Yes, it was very difficult. Yes, we continue on.)
S.
Wednesday, December 12, 2012
Obituary
Earl Horton, Jr., 54, died peacefully at home on December 11, 2012 with his family by his side. Earl was diagnosed with Stage IV Esophageal Cancer in 2009, but gave that beast a run for its money, beating it back, not once but twice even after it has spread to his brain. Earl’s body gave out way before his spirit.
Earl was born on October 24, 1958 in Winnemucca, Nevada, where he spent his childhood and graduated from high school. He attended the University of Nevada, Reno graduating with a Bachelor’s Degree in Psychology in 1991 and a Master’s in Social Work in 1994. During his college years and even after, Earl was very involved in the ATO fraternity, and established meaningful and long-lasting friendships with his fraternity brothers.
Earl worked for Washoe County Juvenile Services for thirty years in a variety of capacities, from work crew to detention to a probation officer. He influenced and made a difference to many youth and families. Earl enjoyed camping, fishing and a cold beer. He was a loud and spirited fan of the Nevada Wolfpack, the Los Angeles Dodgers and the Minnesota Vikings.
Earl’s biggest joys and proudest accomplishments were his children, Morgan Horton (age 19), Katie Horton (age 17) and Earl Horton, III, “Peanut” (age 3) who will carry on his legacy. He is also survived by his proud father, Earl Horton Sr., his beloved sister, Joan Horton, and his three nephews, Jeffrey Horton, Joseph Horton and Julius Horton.
He will be forever cherished and missed by his wife Sandy Tedsen Hellman-Horton as well as his step-children, Keegan Hellman (17), Luke Hellman (16), Chase Hellman (14), Gage Hellman (13), T.J. Hellman (12), Seth Hellman (12) and Ty Hellman (12). Additionally, he is survived by his aunts Margaret Horton-Davis and Barbara Mills, numerous cousins, and his in-law families, the Scrivens and the Tedsens. He was preceded in death by his uncle Richard Horton, his cousin John Harris and his mother Hilda George.
As per Earl’s wishes, there will be no formal services. There will be an informal gathering of family and friends at his home on Saturday, December 15th from 1:00 p.m. to 5:00 p.m. to enjoy drinks and food, and share memories and stories.
In lieu of flowers, Earl’s ATO brothers have set up an account to assist the family at Wells Fargo. The Earl Horton Donation Fund, C/O Wells Fargo Bank, 1200 Disc Drive, Sparks, Nevada 89436 (Account #1016982298)
Tuesday, December 11, 2012
Goodbye E.
A man of great honor, integrity and courage left this Earth this afternoon. While his family and friends will all miss him immensely, I think I can speak for all of us when I say we are all relieved that he is now pain-free and enjoying a beer with his fishing pole in hand.
As per E.'s wishes, there will be no formal services. We will be gathering at our home for an informal open house on Saturday, December 15th from 1:00 p.m. to 5:00 p.m. Please join us for food and drinks, and to share memories and stories of this man we all loved so much.
As per E.'s wishes, there will be no formal services. We will be gathering at our home for an informal open house on Saturday, December 15th from 1:00 p.m. to 5:00 p.m. Please join us for food and drinks, and to share memories and stories of this man we all loved so much.
Sunday, December 9, 2012
Decline
E. had several visitors on Saturday and was able to hold intermittent conversations. He recognized folks and reminisced a bit about old college days. The stories shared made me chuckle. There is no way I can do them justice. Streaking down Virginia Street? Football games in the Bay area? ATO stories galore? Tales of old time Wittenberg? I love the stories. I have heard so many of them from E.'s perspective, but to hear them from other people just made me smile. These are stories that Peanut needs to hear. He needs to know who his dad was and how this man came to be. I sincerely hope that people will take the time to share their thoughts and memories on paper, so I can save them for Peanut when he is older.
Saturday night was rough. E. grew more and more confused. He was restless and agitated. He was hallucinating. He mumbled incoherently throughout the night. Pain medication needs to be administered more and more often. Sunday morning, he woke up agitated and nauseous. Despite giving him anti-nausea medication, he threw up on himself and on his bedding. Getting him and his bedding changed was a three-man job. E. is no longer mobile. He cannot stand without assistance. Even then, it is only for mere minutes. There is no walking, even with his walker. He is not sitting in the recliner next to his bed. He is in his bed full-time. He opens his eyes occasionally and recognizes family members, but is no longer having conversations. He frequently mumbles random statements that do not make sense. He is also seeing things. He is reaching for things that are not there. More often than not, he does not respond. The hospice nurse drained 1 liter of fluid from his abdomen yesterday. I drained 2 liters today. His blood pressure is dropping and his pulse is going up. How quickly he declined from yesterday to today is mind-boggling. There is lots of hand-holding and arm-rubbing, or just quietly sitting beside him. He is not resisting pain medication and for that we are thankful. We are doing our best to make sure he is comfortable and to make sure he knows he is loved.
Saturday night was rough. E. grew more and more confused. He was restless and agitated. He was hallucinating. He mumbled incoherently throughout the night. Pain medication needs to be administered more and more often. Sunday morning, he woke up agitated and nauseous. Despite giving him anti-nausea medication, he threw up on himself and on his bedding. Getting him and his bedding changed was a three-man job. E. is no longer mobile. He cannot stand without assistance. Even then, it is only for mere minutes. There is no walking, even with his walker. He is not sitting in the recliner next to his bed. He is in his bed full-time. He opens his eyes occasionally and recognizes family members, but is no longer having conversations. He frequently mumbles random statements that do not make sense. He is also seeing things. He is reaching for things that are not there. More often than not, he does not respond. The hospice nurse drained 1 liter of fluid from his abdomen yesterday. I drained 2 liters today. His blood pressure is dropping and his pulse is going up. How quickly he declined from yesterday to today is mind-boggling. There is lots of hand-holding and arm-rubbing, or just quietly sitting beside him. He is not resisting pain medication and for that we are thankful. We are doing our best to make sure he is comfortable and to make sure he knows he is loved.
Friday, December 7, 2012
Our Story
Some people are wondering about mine and E.'s "story," so I figured I might as well share it for those of you that aren't familiar.
E. and I met way back in about 1989 or 1990 or so, when I had to do some hours for a criminal justice class at the juvenile hall where he was a supervisor. I liked it so much, I eventually became a regular on-call detention staff, as well as an intern with the juvenile probation department. Turns out, we also wound up having several classes together at UNR. When E. got married, I even attended his wedding!
As graduation approached in 1993, I desperately wanted a job as a Juvenile Probation Officer, so when I was hired in rural Nevada, I found myself moving across the state. E. wound up transferring from detention to probation as well and in 1995, we attended the same P.O.S.T. Academy (8 weeks of policy academy hell). We kept in touch sporadically throughout the years, mostly through trainings and transports.
I figured I'd be in Elko forever. I had a job I loved as a Juvenile Probation Officer. My husband rocked his job as a Flight Paramedic. We adopted our daughter and our seven sons. We were living the good life. Then, in 2004, life took a traumatic turn. My husband was killed in a helicopter crash (the air medical crew was transporting a critically ill infant and her mother from Battle Mountain to Reno). I subsequently became a stay-at-home-mom.
A few years later, my boys and I returned to the big city of Reno. I just so happened to run into E., who was recently divorced. We went to lunch. Later, we went to dinner. And as they say, the rest is history. It was my boys and I (then ages 12, 11, 9, 8, 7, 7, and 7 ... my daughter had reached adulthood and was independent) and his girls and him (then ages 14 and 12). But wait, we weren't done. Our little surprise Peanut was born in March of 2009. A few weeks before he was born, E. was diagnosed with Stage IV Esophageal Cancer, which is when this blog first started.
I know I've shared this pictured before, but here is our beautiful family (from 2011):
The girls are now 19 and 17. The boys are now 17, 16, 14, 13, 12, 12, and 12. And Peanut is 3.
This is where the magic wand is supposed to click overhead and we all get to "live happily ever after."
E. and I met way back in about 1989 or 1990 or so, when I had to do some hours for a criminal justice class at the juvenile hall where he was a supervisor. I liked it so much, I eventually became a regular on-call detention staff, as well as an intern with the juvenile probation department. Turns out, we also wound up having several classes together at UNR. When E. got married, I even attended his wedding!
As graduation approached in 1993, I desperately wanted a job as a Juvenile Probation Officer, so when I was hired in rural Nevada, I found myself moving across the state. E. wound up transferring from detention to probation as well and in 1995, we attended the same P.O.S.T. Academy (8 weeks of policy academy hell). We kept in touch sporadically throughout the years, mostly through trainings and transports.
I figured I'd be in Elko forever. I had a job I loved as a Juvenile Probation Officer. My husband rocked his job as a Flight Paramedic. We adopted our daughter and our seven sons. We were living the good life. Then, in 2004, life took a traumatic turn. My husband was killed in a helicopter crash (the air medical crew was transporting a critically ill infant and her mother from Battle Mountain to Reno). I subsequently became a stay-at-home-mom.
A few years later, my boys and I returned to the big city of Reno. I just so happened to run into E., who was recently divorced. We went to lunch. Later, we went to dinner. And as they say, the rest is history. It was my boys and I (then ages 12, 11, 9, 8, 7, 7, and 7 ... my daughter had reached adulthood and was independent) and his girls and him (then ages 14 and 12). But wait, we weren't done. Our little surprise Peanut was born in March of 2009. A few weeks before he was born, E. was diagnosed with Stage IV Esophageal Cancer, which is when this blog first started.
I know I've shared this pictured before, but here is our beautiful family (from 2011):
The girls are now 19 and 17. The boys are now 17, 16, 14, 13, 12, 12, and 12. And Peanut is 3.
This is where the magic wand is supposed to click overhead and we all get to "live happily ever after."
Thursday, December 6, 2012
Days
I think a lot of people are wondering what our days are looking like.
No, E. is not incoherent and sleeping the day away. No, E. is not sitting on the couch entertaining guests and having jovial conversations.
Let's look at today as a typical day. E. awoke about 7:30. He awoke with immediate nausea and pain. I helped him get out of his hospital bed and using his walker, he slowly made his way to the bathroom (the master bathroom connected to the master bedroom). I walked behind him with my hands on his hips to steady him. Instead of heading to the toilet, he went straight to the sink, where he started throwing up. When it looked like he was done, I had a Zofran (anti-nausea medication) ready. I had him sit down and wait for things to settle. It did no good. He was throwing up again a few minutes later. We eventually made our way to the toilet, but sitting and standing is extremely painful. He wanted to shower, but since I didn't know the protocol with the new drain tube, I put a call into the Hospice service. Because it was going to be a few minutes before a nurse called me back, I gave him a sponge bath in the meantime. His pain level was obviously rising, so I gave him an Oxycodone (probably a poor choice with the established nausea). Minutes later, he was throwing up again. I put some lotion on his extremely dry skin, and got him dressed and back into bed, where he was shivering with cold, pain and nausea. He managed to drink a few sips of water.
Typically, we have a routine of morning meds. There are a variety of pills, as well as a couple of liquid medications E. takes. I must also check his blood sugar and give him his insulin. This morning though, we skipped his entire morning medication routine because he was feeling that poorly. He knew that nothing would stay down. He didn't feel like eating anything so we didn't attempt any food. One of the girls stayed with him while I ran Peanut to preschool.
He dozed on and off, but awoke now and again. We discussed funny things like random stuff Peanut blurts out these days and not-so-funny things like bank accounts and house maintenance. I read him messages and texts from friends and relayed phone calls I have received. He talked about people he still needed to chat with. He made a few phone calls throughout the day. Please don't take it personal if you don't get a phone call. It is totally hit and miss. It's a timing thing. When some people call, it just so happens that they catch him at the "right" time that he's not in pain, he's not nauseous, he's not asleep, and he's in the right mood. The emotional stuff is as painful, if not more so, than the physical stuff.
For lunch, he had a craving for Speedy Burrito, so off the girls ran. In the meantime, the Hospice nurse arrived. His blood pressure and oxygen saturation rate still looked good. He's developing some thrush in his mouth, so they'll send over a prescription for that. They also delivered a "rescue kit" of prescriptions yesterday to help deal with nausea, pain and constipation, so the nurse went over all of them with us. It is really reassuring to know how concerned they are about his comfort. We all agreed that E. needs to start the day with an anti-nausea med and a pain med before he even gets out of bed. That will hopefully prevent a morning like we had today. I received instructions on how to cover his drain tube (Pleurx catheter is the proper name) so E. can shower if he wants to now. The girls returned with E.'s burrito and taco, and E. did manage to take a few bites of the burrito. Another Hospice nurse will come tomorrow to drain the fluid off his abdomen and teach me how. A Hospice social worker will also be visiting tomorrow.
E. took an afternoon nap (as did I, as I have some sort of crud), and had a few emotional phone calls and other moments. He had the t.v. on, but I'm not sure he actively watched any of it. By 6:00, he is pretty much done for the day. I give him his evening meds, check his blood sugar and give him his insulin. I also changed out his pain patch tonight. He's been sleeping pretty well through the night (I hope I didn't just jinx us), typically only waking once or twice if at all.
Today, he spent the whole day in bed, but yesterday, he spent a good chunk of the day, in the recliner next to the bed. He doesn't leave the bedroom. Every once in awhile, he talks of wanting to go somewhere or do something, but while his mind wants to, his body does not cooperate. While he can walk pretty good with his walker, he cannot get out of bed on his own and I feel more comfortable if someone is walking beside him in case he stumbles. Sometimes he asks the same questions repeatedly, but for the most part, he is still very coherent. I am told that with the cancer spread in the liver, there may be increased mental confusion.
Our days are spent at home. The other boys pop their heads in and out. For as little as we do, it is draining. It is hard to explain. I have no idea why I am so tired. I had previously said that watching your loved one in pain is agonizing. I was talking about physical pain. But watching them in emotional pain is just as agonizing. It rips my heart out. And there is nothing I can do about it.
No, E. is not incoherent and sleeping the day away. No, E. is not sitting on the couch entertaining guests and having jovial conversations.
Let's look at today as a typical day. E. awoke about 7:30. He awoke with immediate nausea and pain. I helped him get out of his hospital bed and using his walker, he slowly made his way to the bathroom (the master bathroom connected to the master bedroom). I walked behind him with my hands on his hips to steady him. Instead of heading to the toilet, he went straight to the sink, where he started throwing up. When it looked like he was done, I had a Zofran (anti-nausea medication) ready. I had him sit down and wait for things to settle. It did no good. He was throwing up again a few minutes later. We eventually made our way to the toilet, but sitting and standing is extremely painful. He wanted to shower, but since I didn't know the protocol with the new drain tube, I put a call into the Hospice service. Because it was going to be a few minutes before a nurse called me back, I gave him a sponge bath in the meantime. His pain level was obviously rising, so I gave him an Oxycodone (probably a poor choice with the established nausea). Minutes later, he was throwing up again. I put some lotion on his extremely dry skin, and got him dressed and back into bed, where he was shivering with cold, pain and nausea. He managed to drink a few sips of water.
Typically, we have a routine of morning meds. There are a variety of pills, as well as a couple of liquid medications E. takes. I must also check his blood sugar and give him his insulin. This morning though, we skipped his entire morning medication routine because he was feeling that poorly. He knew that nothing would stay down. He didn't feel like eating anything so we didn't attempt any food. One of the girls stayed with him while I ran Peanut to preschool.
He dozed on and off, but awoke now and again. We discussed funny things like random stuff Peanut blurts out these days and not-so-funny things like bank accounts and house maintenance. I read him messages and texts from friends and relayed phone calls I have received. He talked about people he still needed to chat with. He made a few phone calls throughout the day. Please don't take it personal if you don't get a phone call. It is totally hit and miss. It's a timing thing. When some people call, it just so happens that they catch him at the "right" time that he's not in pain, he's not nauseous, he's not asleep, and he's in the right mood. The emotional stuff is as painful, if not more so, than the physical stuff.
For lunch, he had a craving for Speedy Burrito, so off the girls ran. In the meantime, the Hospice nurse arrived. His blood pressure and oxygen saturation rate still looked good. He's developing some thrush in his mouth, so they'll send over a prescription for that. They also delivered a "rescue kit" of prescriptions yesterday to help deal with nausea, pain and constipation, so the nurse went over all of them with us. It is really reassuring to know how concerned they are about his comfort. We all agreed that E. needs to start the day with an anti-nausea med and a pain med before he even gets out of bed. That will hopefully prevent a morning like we had today. I received instructions on how to cover his drain tube (Pleurx catheter is the proper name) so E. can shower if he wants to now. The girls returned with E.'s burrito and taco, and E. did manage to take a few bites of the burrito. Another Hospice nurse will come tomorrow to drain the fluid off his abdomen and teach me how. A Hospice social worker will also be visiting tomorrow.
E. took an afternoon nap (as did I, as I have some sort of crud), and had a few emotional phone calls and other moments. He had the t.v. on, but I'm not sure he actively watched any of it. By 6:00, he is pretty much done for the day. I give him his evening meds, check his blood sugar and give him his insulin. I also changed out his pain patch tonight. He's been sleeping pretty well through the night (I hope I didn't just jinx us), typically only waking once or twice if at all.
Today, he spent the whole day in bed, but yesterday, he spent a good chunk of the day, in the recliner next to the bed. He doesn't leave the bedroom. Every once in awhile, he talks of wanting to go somewhere or do something, but while his mind wants to, his body does not cooperate. While he can walk pretty good with his walker, he cannot get out of bed on his own and I feel more comfortable if someone is walking beside him in case he stumbles. Sometimes he asks the same questions repeatedly, but for the most part, he is still very coherent. I am told that with the cancer spread in the liver, there may be increased mental confusion.
Our days are spent at home. The other boys pop their heads in and out. For as little as we do, it is draining. It is hard to explain. I have no idea why I am so tired. I had previously said that watching your loved one in pain is agonizing. I was talking about physical pain. But watching them in emotional pain is just as agonizing. It rips my heart out. And there is nothing I can do about it.
Tuesday, December 4, 2012
Monday, December 3, 2012
Meals
Many people have offered to bring meals during these next several weeks, which would would be greatly appreciated. The only kink is that I think we may wind up with several meals on random days and I would hate for anything to go to waste. Our dear friend Lauren has offered (or actually, been nominated) to organize a meal calendar of some sort. So, if you'd like to bring us something (thank you!), please call or text Lauren at 250-7700.
"Love and kindness are never wasted. They always make a difference."
Edited to add:
Meal Calendar Link
"Love and kindness are never wasted. They always make a difference."
Edited to add:
Meal Calendar Link
Hospice
We spoke at length to E.'s oncologist this morning. The cancer is an ugly beast. It has taken over his body. It has taken his strength. It has taken his appetite. He isn't strong enough to tolerate chemotherapy. Even if he were, the cancer would probably be stronger than the chemo. So, we've made the decision to go home on hospice and try to make these last days good ones.
Please respect that this is his decision. It was not a decision that was made easily. We are educated people who have a team of trusted doctors that we respect and consult with, both here locally and at MD Anderson in Texas. When he was initially diagnosed in February of 2009, we were told that his life expectancy was "less than 2 years." He has far surpassed that. Not only did he far surpass that, but he far surpassed that with some darn good years. We made some great memories. We need to remember that.
Although we know that people mean well, we don't need to hear phrases like "Keep fighting." There is nothing left to fight. Please don't tell us about your Great Aunt Frieda who was told she only had months to live, but started on a raw food diet and ate seeds from a chia pet from Mozambique and is now doing great five years later. Or your neighbor's friend's sister who went to that clinic in Mexico for a herbal treatment and is now "cured." Really. Don't do it.
This is not about E. giving up. This is about E. accepting the hand of cards that he was dealt. Like he so eloquently said, he is at peace with his life. He is a good man, a man of high morals and great integrity and he knows that. He worries about his family and his children. He worries that Peanut will not know who he was. But, as for his life, he is good with that. That is a goal we should all strive for.
We're hoping to be released from the hospital today or tomorrow. Because of where the cancer is, it is anticipated that his abdomen will fill with fluid again. In an effort to prevent us from having to go back and forth to the hospital, they are going to surgically insert a drainage tube (so the fluid can just constantly drain into a bag). Once that happens, then he can be discharged. It sounds like the cancer of pancreas is notoriously painful, so hospice will have to stay on top of the pain management. Those of you that know E., can imagine that he's already voiced his opinion about that. He does NOT want to spend his last days "drugged up."
His time is limited. Very limited (the doctor estimated he has two to four weeks left). He is tired. He wants to rest and enjoy the little time he has left with his family. At the risk of offending friends, he doesn't want visitors at this time. Feel free to send cards or email or text any messages you might want relayed. Please, please keep us in your thoughts and prayers during this holiday season. We are losing a man that means the world to us.
Please respect that this is his decision. It was not a decision that was made easily. We are educated people who have a team of trusted doctors that we respect and consult with, both here locally and at MD Anderson in Texas. When he was initially diagnosed in February of 2009, we were told that his life expectancy was "less than 2 years." He has far surpassed that. Not only did he far surpass that, but he far surpassed that with some darn good years. We made some great memories. We need to remember that.
Although we know that people mean well, we don't need to hear phrases like "Keep fighting." There is nothing left to fight. Please don't tell us about your Great Aunt Frieda who was told she only had months to live, but started on a raw food diet and ate seeds from a chia pet from Mozambique and is now doing great five years later. Or your neighbor's friend's sister who went to that clinic in Mexico for a herbal treatment and is now "cured." Really. Don't do it.
This is not about E. giving up. This is about E. accepting the hand of cards that he was dealt. Like he so eloquently said, he is at peace with his life. He is a good man, a man of high morals and great integrity and he knows that. He worries about his family and his children. He worries that Peanut will not know who he was. But, as for his life, he is good with that. That is a goal we should all strive for.
We're hoping to be released from the hospital today or tomorrow. Because of where the cancer is, it is anticipated that his abdomen will fill with fluid again. In an effort to prevent us from having to go back and forth to the hospital, they are going to surgically insert a drainage tube (so the fluid can just constantly drain into a bag). Once that happens, then he can be discharged. It sounds like the cancer of pancreas is notoriously painful, so hospice will have to stay on top of the pain management. Those of you that know E., can imagine that he's already voiced his opinion about that. He does NOT want to spend his last days "drugged up."
His time is limited. Very limited (the doctor estimated he has two to four weeks left). He is tired. He wants to rest and enjoy the little time he has left with his family. At the risk of offending friends, he doesn't want visitors at this time. Feel free to send cards or email or text any messages you might want relayed. Please, please keep us in your thoughts and prayers during this holiday season. We are losing a man that means the world to us.
Sunday, December 2, 2012
Strange Night
When I left E. last night, he was peacefully sleeping. I expected him to get a great night's sleep. So, I was shocked this morning when I came in and he had tall tales of a wild night of chaos. Initially I was appalled at the mistreatment he suffered, but as the stories continued, I realized that things weren't lining up. Clearly, he had been dreaming. Or possibly hallucinating? I tracked the nurse down and voiced my concerns. Was he just super sensitive to the pain medication? Was cancer growing in his brain again? We obviously needed to discuss this with the doctor.
By the time the doctor arrived in the afternoon, E. was in need of pain medication. The nurse and I discussed E.'s crazy night with her. She reviewed his meds and decided the meds couldn't be the culprit. Even though his pain patch was increased, it was still only at 25 mcg (and some people are on 400 mcg!) and he only received .5 of the Dilaudid. She tracked down the MRI of the brain and those results were stable. So, by process of elimination, they decided E. was "sun-downing." I've never heard of this, but as they explained it to me, it's a condition that often occurs in dementia patients, but also occurs in patients with chronic illness. What happens is when the sun goes, a different person basically comes out (kinda like a werewolf, I asked?). Patients can become confused, violent, and delusional. They often hallucinate. This rarely occurs when they are at home (where they are comfortable and secure), but rather occurs in strange environments (like the hospital). There is no predictability as to when someone will "sun-down," as it is totally random, but does occur more often when someone is on heavy narcotics (E. is not on heavy narcotics, so that is not the case with him). So weird.
We did get the results back from E.'s PET/CT scan. They are not good.
There is a 10 mm metastatic left hilar lymph node.
There are five or six 6-7 cm metastases in the liver.
There is a 3 cm mass in the pancreas that is either a metastasis or a primary tumor.
There are bilateral small pleural effusions.
There is a large amount of ascites.
So, in layman's terms, the cancer has spread to the lymph nodes, the liver and the pancreas. There is a lot of fluid in the abdomen (which they drained). There is also some fluid in the lungs. Not good. Not good at all.
By the time the doctor arrived in the afternoon, E. was in need of pain medication. The nurse and I discussed E.'s crazy night with her. She reviewed his meds and decided the meds couldn't be the culprit. Even though his pain patch was increased, it was still only at 25 mcg (and some people are on 400 mcg!) and he only received .5 of the Dilaudid. She tracked down the MRI of the brain and those results were stable. So, by process of elimination, they decided E. was "sun-downing." I've never heard of this, but as they explained it to me, it's a condition that often occurs in dementia patients, but also occurs in patients with chronic illness. What happens is when the sun goes, a different person basically comes out (kinda like a werewolf, I asked?). Patients can become confused, violent, and delusional. They often hallucinate. This rarely occurs when they are at home (where they are comfortable and secure), but rather occurs in strange environments (like the hospital). There is no predictability as to when someone will "sun-down," as it is totally random, but does occur more often when someone is on heavy narcotics (E. is not on heavy narcotics, so that is not the case with him). So weird.
We did get the results back from E.'s PET/CT scan. They are not good.
There is a 10 mm metastatic left hilar lymph node.
There are five or six 6-7 cm metastases in the liver.
There is a 3 cm mass in the pancreas that is either a metastasis or a primary tumor.
There are bilateral small pleural effusions.
There is a large amount of ascites.
So, in layman's terms, the cancer has spread to the lymph nodes, the liver and the pancreas. There is a lot of fluid in the abdomen (which they drained). There is also some fluid in the lungs. Not good. Not good at all.
Saturday, December 1, 2012
Emotional Day
It's been a very emotional day. Aside from the physical aspect of this journey, the emotional side takes its toll as well. There are so many things to work through. I don't feel comfortable sharing those private moments, but trust me when I say they are heartbreaking. The kind of stuff that rips your heart out and makes it so you can't even breathe. In spite of how hard it all is, the tremendous feeling of love still overshadows everything else. Love gets us through.
E.'s pain level sky rocketed today. He'd be fine for about fifteen minutes or so and then it would just go through the roof. After we watched this for awhile, we could take it no more and I told him I was going to find the nurse to get him more pain medication and he wasn't going to argue about it. About that time, the doctor came in and saw how much pain he was in as well. His Fentanyl pain patch was increased from 12 mcg to 25 mcg. He was also given a shot of Dilaudid. It helped a ton!
E. was then taken to go get the fluid drained from his abdomen. They stuck a large needle into his side and began sucking. Any guesses on how much they sucked out? How about 5 liters? Yes, FIVE LITERS! Can you imagine? That's 2 1/2 of of those two liter bottles of Coke! And all that liquid was sitting on his organs. No wonder it was making it a little difficult for him to breathe. They estimated that liquid weighed at least ten pounds. Wowza. His oxygen saturation rate immediately improved. So, having the liquid drained combined with the pain meds on board means he's in the least amount of pain he's been in in weeks. Yay!!!
E.'s pain level sky rocketed today. He'd be fine for about fifteen minutes or so and then it would just go through the roof. After we watched this for awhile, we could take it no more and I told him I was going to find the nurse to get him more pain medication and he wasn't going to argue about it. About that time, the doctor came in and saw how much pain he was in as well. His Fentanyl pain patch was increased from 12 mcg to 25 mcg. He was also given a shot of Dilaudid. It helped a ton!
E. was then taken to go get the fluid drained from his abdomen. They stuck a large needle into his side and began sucking. Any guesses on how much they sucked out? How about 5 liters? Yes, FIVE LITERS! Can you imagine? That's 2 1/2 of of those two liter bottles of Coke! And all that liquid was sitting on his organs. No wonder it was making it a little difficult for him to breathe. They estimated that liquid weighed at least ten pounds. Wowza. His oxygen saturation rate immediately improved. So, having the liquid drained combined with the pain meds on board means he's in the least amount of pain he's been in in weeks. Yay!!!
Friday, November 30, 2012
Back to the Hospital
E.'s cousin came to visit last night and I shared with her the events of the previous 24 hours. She chatted with E. and could easily see how he was suffering in pain. She and I agreed that he needed to go to the Emergency Room for some relief. After tag-teaming him with our line of reasoning, he finally conceded. We loaded him up and were on our way before he could change his mind.
The Emergency Room was not exactly what we expected on a Thursday night, but supposedly the computers were down which made everything go in slow motion. We arrived about 8:00 p.m. After doing an x-ray on E.'s abdomen, they discovered that he was backed up, not only with fecal matter, but also with barium (barium from his Upper GI from 11 days ago!). That barium had essentially turned to concrete up there and was causing a few problems. Ya think? A large (and disgusting) enema was supposed to do the trick. But it didn't. It actually did nothing. At all. Except cause him A LOT of pain. So, they decided to admit him. At 5:00 a.m. Yes, after we had been there for nine hours. Sigh.
He got settled in a regular room on the Oncology floor. But then they couldn't really do anything for him because he was scheduled for a PET/CT at 11:00. Everything had to wait until after that test was completed. (Side note: As part of the PET/CT, he had to drink more barium. I kid you not.) Because the PET/CT was scheduled previously on an outpatient basis, it was scheduled in the office building across the street from the hospital. That meant that E. had to be transported and I assumed we would just put him in a wheelchair and wheel him across the street. Instead, the transport company put him in a wheelchair, took him through the Emergency Room, out the ambulance bay and into a van. We then DROVE across the street (literally, across a residential street), unloaded him, went into the building and got him to his PET/CT. We repeated the process on the way back. I'm sure that just cost us a pretty penny. On a good note, E. handled the scan like a trooper.
Once back in the room, they gave E. a shot in the belly to help get some things moving in there. I forget what the shot is called. They're also having him drink some "Magnesium Citrate," which supposedly also helps things along. E. has been very cranky, and has gotten quite pissy with several of the nurses and doctors. I know he's frustrated and that frustration is coming out. He's also got a bit of confusion and disorientation, which only adds to that frustration. Add intense pain to the mix, and it's just a ball of fun.
They did another x-ray of his abdomen to monitor the progress of sh*t in there. Literally. Haha. He seems to think he's getting out of the hospital tomorrow, but I don't think that will be the case at all. We haven't seen any of E.'s regular doctors. I called his oncologist, who was out of the office. I called his radiation oncologist, who was out of the office. I called his gastroenterologist, who was out of the office. I called his primary care provider, who was out of the office. I guess this was THE Friday to take off. Now that we're heading into the weekend, my guess is that we're here until at least Monday. Hoping for some pain relief for him and some sleep for the both of us.
The Emergency Room was not exactly what we expected on a Thursday night, but supposedly the computers were down which made everything go in slow motion. We arrived about 8:00 p.m. After doing an x-ray on E.'s abdomen, they discovered that he was backed up, not only with fecal matter, but also with barium (barium from his Upper GI from 11 days ago!). That barium had essentially turned to concrete up there and was causing a few problems. Ya think? A large (and disgusting) enema was supposed to do the trick. But it didn't. It actually did nothing. At all. Except cause him A LOT of pain. So, they decided to admit him. At 5:00 a.m. Yes, after we had been there for nine hours. Sigh.
He got settled in a regular room on the Oncology floor. But then they couldn't really do anything for him because he was scheduled for a PET/CT at 11:00. Everything had to wait until after that test was completed. (Side note: As part of the PET/CT, he had to drink more barium. I kid you not.) Because the PET/CT was scheduled previously on an outpatient basis, it was scheduled in the office building across the street from the hospital. That meant that E. had to be transported and I assumed we would just put him in a wheelchair and wheel him across the street. Instead, the transport company put him in a wheelchair, took him through the Emergency Room, out the ambulance bay and into a van. We then DROVE across the street (literally, across a residential street), unloaded him, went into the building and got him to his PET/CT. We repeated the process on the way back. I'm sure that just cost us a pretty penny. On a good note, E. handled the scan like a trooper.
Once back in the room, they gave E. a shot in the belly to help get some things moving in there. I forget what the shot is called. They're also having him drink some "Magnesium Citrate," which supposedly also helps things along. E. has been very cranky, and has gotten quite pissy with several of the nurses and doctors. I know he's frustrated and that frustration is coming out. He's also got a bit of confusion and disorientation, which only adds to that frustration. Add intense pain to the mix, and it's just a ball of fun.
They did another x-ray of his abdomen to monitor the progress of sh*t in there. Literally. Haha. He seems to think he's getting out of the hospital tomorrow, but I don't think that will be the case at all. We haven't seen any of E.'s regular doctors. I called his oncologist, who was out of the office. I called his radiation oncologist, who was out of the office. I called his gastroenterologist, who was out of the office. I called his primary care provider, who was out of the office. I guess this was THE Friday to take off. Now that we're heading into the weekend, my guess is that we're here until at least Monday. Hoping for some pain relief for him and some sleep for the both of us.
Thursday, November 29, 2012
Ultrasound
Last night was a long one. There was little sleep for either of us. E. had some severe pain and constipation issues. I wound up calling the Home Health Nurse, who came over at about 9:30 or 10:00 p.m. to help. Unfortunately, there wasn't a solution to be had and E. refused to go to the Emergency Room. Up and down, up and down, all night long.
By morning, things were a tad better, but not much. E. did manage to get his ultrasound done, but by the time he got home, he was throwing up. There just didn't seem to be an end in sight to the pain. The family doctor called and explained that while the ultrasound showed some fluid retention in his abdomen, there wasn't the massive amount she expected to see. She was going to fax the report to his GI doctor to see how they wanted to handle the situation and if they wanted to drain the fluid.
I'm hoping for a good night sleep for everyone tonight.
By morning, things were a tad better, but not much. E. did manage to get his ultrasound done, but by the time he got home, he was throwing up. There just didn't seem to be an end in sight to the pain. The family doctor called and explained that while the ultrasound showed some fluid retention in his abdomen, there wasn't the massive amount she expected to see. She was going to fax the report to his GI doctor to see how they wanted to handle the situation and if they wanted to drain the fluid.
I'm hoping for a good night sleep for everyone tonight.
Wednesday, November 28, 2012
No Go on the Ultrasound
The Home Health Nurse came this morning and was able to draw labs straight from the picc line. It was nice not having to go to the Lab. The picc line will have to be flushed, but we're not quite sure if that will be weekly or daily. E.'s vitals were all stable, although his oxygen saturation level is still running low and his pulse is still running high.
The ultrasound was a bust. E. was simply in too much pain to go anywhere. He could barely make it from the bed to the bathroom. There was no way he was going to make it to the car. I called the Radiology Department and was able to reschedule for tomorrow. So, we'll try again tomorrow and hope Take #2 is successful.
The doctor's office called this afternoon with the results of his labs already. E.'s potassium level was low at 3.3 so they're calling in a prescription for potassium. If I recall correctly, the potassium comes in a powder that needs to be mixed in water and E. really hates it (I think he's had it at least once or twice before).
The liver numbers are still improving, so that's good.
1) Bilirubin, Total: 2.7 (normal 0.0-1.1)
2) Alkaline Phosphatase: 214 (normal 25-150)
3) AST: 68 (normal 0-40)
4) ALT: 34 (normal 0-44)
To compare to past results:
Bilirubin on 11/20/12: 3.8; 11/14/12: 5.8; 10/29/12: 8.4
Alkaline Phosphatase on 11/20/12: 212; 11/14/12: 484; 10/29/12: 390
AST on 11/20/12: 71; 11/14/12: 132; 10/29/12: 173
ALT on 11/20/12: 49; 11/14/12: 107; 10/29/12: 128
The ultrasound was a bust. E. was simply in too much pain to go anywhere. He could barely make it from the bed to the bathroom. There was no way he was going to make it to the car. I called the Radiology Department and was able to reschedule for tomorrow. So, we'll try again tomorrow and hope Take #2 is successful.
The doctor's office called this afternoon with the results of his labs already. E.'s potassium level was low at 3.3 so they're calling in a prescription for potassium. If I recall correctly, the potassium comes in a powder that needs to be mixed in water and E. really hates it (I think he's had it at least once or twice before).
The liver numbers are still improving, so that's good.
1) Bilirubin, Total: 2.7 (normal 0.0-1.1)
2) Alkaline Phosphatase: 214 (normal 25-150)
3) AST: 68 (normal 0-40)
4) ALT: 34 (normal 0-44)
To compare to past results:
Bilirubin on 11/20/12: 3.8; 11/14/12: 5.8; 10/29/12: 8.4
Alkaline Phosphatase on 11/20/12: 212; 11/14/12: 484; 10/29/12: 390
AST on 11/20/12: 71; 11/14/12: 132; 10/29/12: 173
ALT on 11/20/12: 49; 11/14/12: 107; 10/29/12: 128
Tuesday, November 27, 2012
Picc Line
E. was agreeable to trying a pain patch, so we placed the first one on him last night. It's the lowest dose right now. He wears it for three days and then he gets a new one. The idea is that it takes the edge off the pain and keeps him a little more comfortable. He can still take his other pain meds for any "break through" pain. If this level of pain meds is not adequate, they can increase the dosage of both the pain patch and the other meds as well. I'm not sure if the pain is getting more intense or if E. is getting sick of everyone nagging him, but he seems more open to pain relief these days. I'm not sure why, but nausea has hit hard the last couple of days. He's gotten sick both yesterday and today. Since he hasn't been eating, that means he's throwing up bile. And since the last throwing up episode wound up in a bloody mess, I stand over his shoulder and watch him like a hawk. Thankfully, there's been no blood.
E.'s very unstable on his feet these days and moving anywhere is slow and tedious. I have to remember to plan double the time I think we need. We managed to get from the house to the car with his walker, but it used up every ounce of energy he had. By the time we got to the hospital, we had to resort to a wheelchair. Other than the 45 minute delay at Radiology, the procedure to get the picc line only took a few minutes and we were headed home again. With E.'s veins as weak as they are, I think the picc line will save him a lot of pain and agony. It will be nice not to have to watch people stick him over and over again or dig around trying to get a good stick.
E. seems a little confused from time to time. It may be the medication, or the dehydration, or the pain meds, or the cancer, or the lack of nutrition, or any combination of the above. Sometimes I have no idea what he is talking about. Sometimes when I figure it out, I have to laugh because it has nothing to do with what is going on right now. But sometimes he's got it all together and I'm the one that doesn't have a clue. What a pair we are.
So tonight, I have him all tucked in to his hospital bed, right next to the "big bed." I have the rails up on the sides so he can't make any crazy escapes in the night. Hoping for a good night's sleep for all of us.
E.'s very unstable on his feet these days and moving anywhere is slow and tedious. I have to remember to plan double the time I think we need. We managed to get from the house to the car with his walker, but it used up every ounce of energy he had. By the time we got to the hospital, we had to resort to a wheelchair. Other than the 45 minute delay at Radiology, the procedure to get the picc line only took a few minutes and we were headed home again. With E.'s veins as weak as they are, I think the picc line will save him a lot of pain and agony. It will be nice not to have to watch people stick him over and over again or dig around trying to get a good stick.
E. seems a little confused from time to time. It may be the medication, or the dehydration, or the pain meds, or the cancer, or the lack of nutrition, or any combination of the above. Sometimes I have no idea what he is talking about. Sometimes when I figure it out, I have to laugh because it has nothing to do with what is going on right now. But sometimes he's got it all together and I'm the one that doesn't have a clue. What a pair we are.
So tonight, I have him all tucked in to his hospital bed, right next to the "big bed." I have the rails up on the sides so he can't make any crazy escapes in the night. Hoping for a good night's sleep for all of us.
Monday, November 26, 2012
Doctor Visit
We got in to see the doctor first thing this morning. I just love our family doctor.
She quickly assessed the situation and immediately wrote her "to do" list.
* get a picc line inserted over at Radiology
* set up IV hydration
* order labs
* fill out a form for a handicap placard for DMV
* order abdominal ultrasound to check for fluid retention
* get a hospital bed and wheelchair delivered
* monitor diabetes - check blood glucose numbers in a week and re-evaluate
* prescribe pain patches
* switch medications to liquid or IV form if available
* communicate with home health about ongoing care
By the end of the day, she had most of her list done. E's scheduled to get his picc line inserted tomorrow. We had to run by the lab to get his protime, as it was a prerequisite for tomorrow's procedure, but future labs can just be drawn from his picc line. The abdominal ultrasound is scheduled for Thursday. The hospital bed and wheelchair are being delivered tomorrow. Pain patches and liquid meds have been called in to the pharmacy. The DMV form has been filled out and now awaits me actually taking it to that dreaded place. Even the infusion clinic has already called to collect basic information to set up E.'s account for his hydration supplies. I talked to her about my concern regarding his oxygen saturation levels as they have been running between 90 and 93 (once as low as 88). She explained that she wanted to check for potential causes before just giving him oxygen as she'd much rather treat the problem than just provide a bandaid. If there is a bunch of fluid in his abdomen, it could be pushing on organs including his diaphragm, making it difficult for him to getting adequate oxygen exchange. If fluid retention is not the issue, E. may need some supplemental oxygen at that point.
I went ahead and cancelled the visit from the home health nurse today since we'd already seen the doctor. E.'s vitals were stable and I think that's all home health would be checking today.
She quickly assessed the situation and immediately wrote her "to do" list.
* get a picc line inserted over at Radiology
* set up IV hydration
* order labs
* fill out a form for a handicap placard for DMV
* order abdominal ultrasound to check for fluid retention
* get a hospital bed and wheelchair delivered
* monitor diabetes - check blood glucose numbers in a week and re-evaluate
* prescribe pain patches
* switch medications to liquid or IV form if available
* communicate with home health about ongoing care
By the end of the day, she had most of her list done. E's scheduled to get his picc line inserted tomorrow. We had to run by the lab to get his protime, as it was a prerequisite for tomorrow's procedure, but future labs can just be drawn from his picc line. The abdominal ultrasound is scheduled for Thursday. The hospital bed and wheelchair are being delivered tomorrow. Pain patches and liquid meds have been called in to the pharmacy. The DMV form has been filled out and now awaits me actually taking it to that dreaded place. Even the infusion clinic has already called to collect basic information to set up E.'s account for his hydration supplies. I talked to her about my concern regarding his oxygen saturation levels as they have been running between 90 and 93 (once as low as 88). She explained that she wanted to check for potential causes before just giving him oxygen as she'd much rather treat the problem than just provide a bandaid. If there is a bunch of fluid in his abdomen, it could be pushing on organs including his diaphragm, making it difficult for him to getting adequate oxygen exchange. If fluid retention is not the issue, E. may need some supplemental oxygen at that point.
I went ahead and cancelled the visit from the home health nurse today since we'd already seen the doctor. E.'s vitals were stable and I think that's all home health would be checking today.
Sunday, November 25, 2012
Made it Through the Weekend
It's Sunday evening and we're still at home. That's a very good thing.
The physical therapist came by today to do her evaluation, but E. was in too much pain to even get out of bed. She did give me some tips and pointers. She also showed me some things I could do with him when he's feeling a little more comfortable to help with his back and hip pain. She'll be back to try again on Saturday.
I wish I could say that E.'s feeling better and things are on the upswing, but that's not the case at all. I have a list of things we need to discuss with the doctor, so we'll be calling first thing in the morning to make an appointment.
Seeing someone you love in this much pain is agonizing. I wish I could make it all better.
The physical therapist came by today to do her evaluation, but E. was in too much pain to even get out of bed. She did give me some tips and pointers. She also showed me some things I could do with him when he's feeling a little more comfortable to help with his back and hip pain. She'll be back to try again on Saturday.
I wish I could say that E.'s feeling better and things are on the upswing, but that's not the case at all. I have a list of things we need to discuss with the doctor, so we'll be calling first thing in the morning to make an appointment.
Seeing someone you love in this much pain is agonizing. I wish I could make it all better.
Friday, November 23, 2012
Home Health Nurse
A Home Health Nurse visited today. She spent a lot of time going over E.'s history, his medications, his discharge instructions and the services they would be providing. E. slept on and off throughout her visit and wasn't thrilled with having to answer the same questions for yet another person. He is frustrated because he feels like there are too many people involved in his case. (He'll really be thrilled after the Certified Nursing Assistant, the Physical Therapist, and the Occupational Therapist all visit next week too. Oh, and throw in the Palliative Care folks too.)
I expressed some concern about his diabetes medications. His oral diabetes medications were discontinued because of his poor liver function, so he is strictly on insulin currently. With how little he is eating, I was unsure of how much short and long-acting insulin to give him. The Home Health Nurse called the Primary Care Doctor to get some clarification, so now I have guidance there.
There's also a general concern about dehydration. E. is simply not drinking enough liquids to stay hydrated. She recommended 16 to 24 ounces of liquids per day at a minimum and we're lucky if E. has 8. The nurse and I both agreed that IV hydration would be beneficial and we discussed the apparent need for a picc line since E.'s veins are so horrible and don't maintain peripheral IV's very well at all. Since it's the long weekend though, we won't be able to get a doctor's order for a picc line until Monday. The nurse wasn't sure he'd make it through the weekend without some IV hydration, which would mean a trip to the Emergency Room and undoubtedly another admission to the hospital. Groan. (After the nurse left, she spoke to her supervisor and found out that she could start a peripheral IV and slowly run a bag of IV hydration overnight. I suggested this to E. and explained our reasoning behind it, but he grumpily opposed it in very colorful language. So, we cross our fingers and hope he drinks enough to stay hydrated enough to stay out of the dang hospital.)
There appears to be some fluid collecting in E.'s abdomen. It is big and hard. The nurse measured it and will continue to monitor it. It may possibly need to be drained.
E.'s blood pressure continues to be good. His oxygen saturation rate was 93, which concerned me, but the nurse said it was okay. When it was that level at the hospital, they put him on a couple liters of oxygen.
Getting in and out of our bed (we have a big tall log bed) is proving to be too difficult. E. slept in Grandpa's bed in the guest room last night as it is easier for him to get in and out of, although he still needs assistance. (It was worse than having a newborn baby at home last night, as I was trying to listen for every sound.) I think it is time to bring in a hospital bed and align it next to our bed. That way, he can be comfortable and I can still be next to him. I think having the hospital bed with the ability to raise the head will help too. It will make it more comfortable for him and make it easier for him to get out of bed. The hardest thing for him is to get into the sitting position when he's been laying down. When I suggested it might be time for a hospital bed, E. said, "probably." I always know I am on the right track when I don't hear cuss words or a big argument from him.
So, we continue to try to push the fluids and keep him out of pain.
I expressed some concern about his diabetes medications. His oral diabetes medications were discontinued because of his poor liver function, so he is strictly on insulin currently. With how little he is eating, I was unsure of how much short and long-acting insulin to give him. The Home Health Nurse called the Primary Care Doctor to get some clarification, so now I have guidance there.
There's also a general concern about dehydration. E. is simply not drinking enough liquids to stay hydrated. She recommended 16 to 24 ounces of liquids per day at a minimum and we're lucky if E. has 8. The nurse and I both agreed that IV hydration would be beneficial and we discussed the apparent need for a picc line since E.'s veins are so horrible and don't maintain peripheral IV's very well at all. Since it's the long weekend though, we won't be able to get a doctor's order for a picc line until Monday. The nurse wasn't sure he'd make it through the weekend without some IV hydration, which would mean a trip to the Emergency Room and undoubtedly another admission to the hospital. Groan. (After the nurse left, she spoke to her supervisor and found out that she could start a peripheral IV and slowly run a bag of IV hydration overnight. I suggested this to E. and explained our reasoning behind it, but he grumpily opposed it in very colorful language. So, we cross our fingers and hope he drinks enough to stay hydrated enough to stay out of the dang hospital.)
There appears to be some fluid collecting in E.'s abdomen. It is big and hard. The nurse measured it and will continue to monitor it. It may possibly need to be drained.
E.'s blood pressure continues to be good. His oxygen saturation rate was 93, which concerned me, but the nurse said it was okay. When it was that level at the hospital, they put him on a couple liters of oxygen.
Getting in and out of our bed (we have a big tall log bed) is proving to be too difficult. E. slept in Grandpa's bed in the guest room last night as it is easier for him to get in and out of, although he still needs assistance. (It was worse than having a newborn baby at home last night, as I was trying to listen for every sound.) I think it is time to bring in a hospital bed and align it next to our bed. That way, he can be comfortable and I can still be next to him. I think having the hospital bed with the ability to raise the head will help too. It will make it more comfortable for him and make it easier for him to get out of bed. The hardest thing for him is to get into the sitting position when he's been laying down. When I suggested it might be time for a hospital bed, E. said, "probably." I always know I am on the right track when I don't hear cuss words or a big argument from him.
So, we continue to try to push the fluids and keep him out of pain.
Thursday, November 22, 2012
Thanksgiving
I wish I could say that E. was able to enjoy a big Thanksgiving feast of turkey and all the fixings, but that was not the case. He had a few bites of a quesadilla for breakfast, a couple of sips of an Ensure for lunch and that was about it. He watched a bit of the parade and opened his eyes for football now and again. In spite of all that, he was glad to be home.
Even before E. went into the hospital, I had a feeling that cooking a big Thanksgiving meal might not work out so well and wound up ordering pre-made turkey and ham meals (along with all the sides) from Raley's. (Those of you that know E. and know how much he likes to cook, can imagine how this didn't sit well with him.) A big shout out to Morgan for heating everything up and making Thanksgiving dinner happen ... it actually was all super yummy!
And just to share a funny conversation I had with Peanut when he crawled into bed with E. and I this morning:
Me: "Peanut, today is Thanksgiving and we have lots of things to be thankful for. What are you thankful for?"
Peanut: "Corn."
Me: "Corn???" What? Like popcorn? Or regular corn?"
Peanut: "Just regular corn."
Me: "That's nice. Anything else?
Peanut: "No. Just corn."
Me: "Well, I'm thankful for you. And I'm thankful that daddy is home from the hospital. How about you."
Peanut: "I'm thankful for corn. I really like corn."
So there you have it. We all have to be thankful for something. And Peanut is thankful for corn. (Shut it Amy and your "Secret Love of Corn Society." There is something wrong with you people. Haha.)
Even before E. went into the hospital, I had a feeling that cooking a big Thanksgiving meal might not work out so well and wound up ordering pre-made turkey and ham meals (along with all the sides) from Raley's. (Those of you that know E. and know how much he likes to cook, can imagine how this didn't sit well with him.) A big shout out to Morgan for heating everything up and making Thanksgiving dinner happen ... it actually was all super yummy!
And just to share a funny conversation I had with Peanut when he crawled into bed with E. and I this morning:
Me: "Peanut, today is Thanksgiving and we have lots of things to be thankful for. What are you thankful for?"
Peanut: "Corn."
Me: "Corn???" What? Like popcorn? Or regular corn?"
Peanut: "Just regular corn."
Me: "That's nice. Anything else?
Peanut: "No. Just corn."
Me: "Well, I'm thankful for you. And I'm thankful that daddy is home from the hospital. How about you."
Peanut: "I'm thankful for corn. I really like corn."
So there you have it. We all have to be thankful for something. And Peanut is thankful for corn. (Shut it Amy and your "Secret Love of Corn Society." There is something wrong with you people. Haha.)
Wednesday, November 21, 2012
Home
By the time I got to the hospital this morning, I once again missed the GI doctor. According to E., the GI doctor signed off on his discharge and we then just needed the Internal Medicine doctor to sign off as well. We waited and waited and waited. E. was getting grumpier with each click of the clock. She finally made her rounds in the late afternoon and agreed to discharge E. with Home Health in place. She ordered a nurse, a certified nursing assistant, physical therapy and occupational therapy. E. didn’t think any of it was necessary, but I was especially glad to hear about the nursing care. If nothing else, a nurse can offer IV hydration, which I think will be a huge help. E. seems to think he can drink enough by mouth, but I don’t agree. The nurse can also collect labs. Considering E. went through four IV’s in his short hospital stay, we discussed the possible need for a picc line or a port. We’ll have to discuss this further with his primary care doctor. The funniest thing to me was when E. argued against physical therapy, stating that he would instead just go to the gym and work out. Now, those of you that have seen him in the last few weeks, know that that there is no way he is going to be going to the gym any time soon, even for a visit, let alone to work out. When the doctor suggested that the CNA could help him with showers, E.’s facial expression said it all. She caught on quickly and revised her initial statement by saying that the CNA could offer his wife suggestions of how she could help him with showers and other daily tasks. Haha.
It took awhile to get IV’s disconnected, discharge papers filled out, prescriptions written and a wheelchair delivered. We were finally out the door and still had to stop at the pharmacy. The first order of business at home was a nice, long, hot shower. Toothbrush, toothpaste, lotion, deodorant, lotion, pajamas and back in bed by 8:00 p.m. Ahhhh, home sweet home.
So thankful.
Tuesday, November 20, 2012
Regular Room
When I got to the hospital this morning, E. was sitting up in a chair, trying to eat some "cream of crap." He had some great color and just seemed to be doing better overall. Even his voice seemed stronger. We had several longer conversations, rather than the short choppy question and answer sessions that he has typically been having. When it was time to take a walk, E. pushed the wheelchair around the nurses' station twice. He was more stable on his feet that he has been in weeks. It was a huge improvement. I think he tuckered himself out though, because he didn't last much longer in the chair before he was back in bed and dozing on and off again. His voice was back to being weak and raspy, and conversation was minimal again.
I missed the GI doctor, but E. claimed that the GI doctor said everything looked good on the Upper GI. God bless the man, but he doesn't always get the information right, so I was hoping to track down the GI doctor myself. I never did find the GI doctor, but the Internal Medicine doctor came in and confirmed that all looked good on the Upper GI. There didn't appear to be any obstructions. E. was given clearance to begin a regular diet and try to eat whatever he wanted to try. She was concerned that he hasn't been nor is he eating enough. She thought that E. might get to go home tomorrow, but the GI had thought maybe the next day so I'm not sure who will win out. They served chicken, rice, vegetables and a roll for lunch. E. ate about 6 or 7 bites of chicken and probably half of the roll. It was very difficult though and he had a tough time getting it down. Afterwards, he was nauseous and had to take some anti-nausea medication.
There was some confusion if E. could move to a regular room or not. Because of that IV medication that E. is on that helps stop/prevent internal bleeding, hospital policy sometimes dictates that patients need to remain in ICU to be monitored (policy seems to change monthly). It was finally confirmed that E. could be moved to a regular room, but his heart would need to be monitored via a telemetry unit. Turns out, he was going to a room on the fourth floor and not the oncology unit after all. We had to wait several hours for a bed to finally open up. As they wheeled him down the hall to his new room, we passed numerous empty rooms and vacant beds on both sides of the hall. I'm not sure what exactly the hold up was, or if they just wanted to make sure E. had an extra special room. Because boy was Room #405 "special."
Room #405 was a tiny room. A tiny room with two beds. A tiny room with two beds and no chairs. A tiny room with two beds and no chairs and a roommate. A tiny room with two beds and no chairs and a roommate with dementia. I found two chairs to drag in and wedge between the foot of the bed and the bathroom for E.'s dad and myself, but had to move them every time dementia roommate had to use the restroom (like every 10 minutes) or whenever a nurse came in. Dementia roommate kept getting in and out of bed and wandering around the room, striking up conversation. He kept telling me how he worked there, while his hospital gown kept flapping in the breeze (yes, I got flashed repeatedly). He'd been on this job for 18 days and finally got the light in this place working. He wanted to search through E.'s bags because he couldn't find his tools. He kept asking me for his next job and for the schedule. I didn't know what to do, so I played along and I asked him if he ordered all the parts already. We had quite the conversation about the jobs that were lined up to do. He wasn't happy with the schedule I had worked out though because he had to get to L.A. for his next job. The entertainment value wore out after about 20 minutes. E. slept through it all. Or pretended to sleep through it all. Grandpa didn't have his hearing aids in so missed most of the fun. Eventually, I could take it no more and strolled down to the nurses' station. After chatting with a few people, E. was transferred to a private room down the hall.
E.'s been having some trouble with his IV's. His right arm is completely shot. He's got so much scar tissue there (from chemo, past infiltrated lines, cellulitis, blood clots, etc.), that no blood can even be drawn from that arm. He's now on his third IV on his left arm and it just went bad tonight too, so they're going to have to start yet another one. He cringes every time the lab shows up to draw blood and I immediately go on the defensive. Oh, the advantages of having a picc line or a port.
Dinner looked tasty, but one bite told E. otherwise. It had bell peppers in it and those of you who know E., know how much he despises bell peppers. E. requested a peanut butter and jelly sandwich instead, but one couldn't be found. The nurse did find a turkey sandwich instead, so E. got a bit of that down. Hopefully he'll get a decent night's sleep. We're both crossing our fingers that he'll be discharged tomorrow, or the next day at the latest so he can be home for Thanksgiving.
(P.S. Today's bilirubin level was back at a 3.8.)
I missed the GI doctor, but E. claimed that the GI doctor said everything looked good on the Upper GI. God bless the man, but he doesn't always get the information right, so I was hoping to track down the GI doctor myself. I never did find the GI doctor, but the Internal Medicine doctor came in and confirmed that all looked good on the Upper GI. There didn't appear to be any obstructions. E. was given clearance to begin a regular diet and try to eat whatever he wanted to try. She was concerned that he hasn't been nor is he eating enough. She thought that E. might get to go home tomorrow, but the GI had thought maybe the next day so I'm not sure who will win out. They served chicken, rice, vegetables and a roll for lunch. E. ate about 6 or 7 bites of chicken and probably half of the roll. It was very difficult though and he had a tough time getting it down. Afterwards, he was nauseous and had to take some anti-nausea medication.
There was some confusion if E. could move to a regular room or not. Because of that IV medication that E. is on that helps stop/prevent internal bleeding, hospital policy sometimes dictates that patients need to remain in ICU to be monitored (policy seems to change monthly). It was finally confirmed that E. could be moved to a regular room, but his heart would need to be monitored via a telemetry unit. Turns out, he was going to a room on the fourth floor and not the oncology unit after all. We had to wait several hours for a bed to finally open up. As they wheeled him down the hall to his new room, we passed numerous empty rooms and vacant beds on both sides of the hall. I'm not sure what exactly the hold up was, or if they just wanted to make sure E. had an extra special room. Because boy was Room #405 "special."
Room #405 was a tiny room. A tiny room with two beds. A tiny room with two beds and no chairs. A tiny room with two beds and no chairs and a roommate. A tiny room with two beds and no chairs and a roommate with dementia. I found two chairs to drag in and wedge between the foot of the bed and the bathroom for E.'s dad and myself, but had to move them every time dementia roommate had to use the restroom (like every 10 minutes) or whenever a nurse came in. Dementia roommate kept getting in and out of bed and wandering around the room, striking up conversation. He kept telling me how he worked there, while his hospital gown kept flapping in the breeze (yes, I got flashed repeatedly). He'd been on this job for 18 days and finally got the light in this place working. He wanted to search through E.'s bags because he couldn't find his tools. He kept asking me for his next job and for the schedule. I didn't know what to do, so I played along and I asked him if he ordered all the parts already. We had quite the conversation about the jobs that were lined up to do. He wasn't happy with the schedule I had worked out though because he had to get to L.A. for his next job. The entertainment value wore out after about 20 minutes. E. slept through it all. Or pretended to sleep through it all. Grandpa didn't have his hearing aids in so missed most of the fun. Eventually, I could take it no more and strolled down to the nurses' station. After chatting with a few people, E. was transferred to a private room down the hall.
E.'s been having some trouble with his IV's. His right arm is completely shot. He's got so much scar tissue there (from chemo, past infiltrated lines, cellulitis, blood clots, etc.), that no blood can even be drawn from that arm. He's now on his third IV on his left arm and it just went bad tonight too, so they're going to have to start yet another one. He cringes every time the lab shows up to draw blood and I immediately go on the defensive. Oh, the advantages of having a picc line or a port.
Dinner looked tasty, but one bite told E. otherwise. It had bell peppers in it and those of you who know E., know how much he despises bell peppers. E. requested a peanut butter and jelly sandwich instead, but one couldn't be found. The nurse did find a turkey sandwich instead, so E. got a bit of that down. Hopefully he'll get a decent night's sleep. We're both crossing our fingers that he'll be discharged tomorrow, or the next day at the latest so he can be home for Thanksgiving.
(P.S. Today's bilirubin level was back at a 3.8.)
Monday, November 19, 2012
Grumpy
A different GI doctor made rounds this morning. He said he reviewed the procedure and case notes of his partner, as well as E.'s labs. It looked to him like the bleeding was under control since E. hadn't vomited any more blood and the labs (specifically, his H & H) were looking good. He said that it wasn't clear if the bleeding was coming from the esophageal varice or from the mass. He actually said that it would be better if the bleeding was from the varice rather than from the mass as it would be less likely to bleed again. If the bleeding was coming from the mass, it could start bleeding again at any time without warning. (Yet after reading a bit on the internet, it sounds as if once you have a bleeding esophageal varice, you are prone to more bleeding esophageal varices.) Either way, bleeding varices and masses don't sound good.
They gave E. some a medication to stimulate his appetite today called Megace. He managed to eat a small container of pudding before they informed him that he was scheduled for an Upper GI at 7:00 tonight (now postponed to 8:30 or 9:00 pm) and was allowed nothing more to eat or drink. So much for that! They increased the IV fluids as they are concerned about the low output. Despite the high volume of hydration they've already pumped into E., he's only peed a very minimal amount. I'm hoping this is only due to the fact that he was so dehydrated and once he gets caught up, input and output will be more proportional to each other.
The Internal Medicine doctor is concerned that there might be an obstruction affecting his eating, which is why she ordered the Upper GI. The concern is that the mass in the small intestines (at the base of the stomach) has possibly grown larger, thereby blocking food from going any further. So, for today's Upper GI, E. will drink some Barium (a thick, chalky white substance) and then they'll take a series of x-rays as they watch it move through his system.
E. dozed on and off throughout the day. He grimaced in pain frequently, but will no longer even tell me what his pain level is on the pain scale because he is sick of me suggesting pain medication. He's taken none today. He's watching a little Monday Night Football, excited to see local UNR boy Colin Kaepernick as the starting quarterback. His bilirubin went UP from 3.8 yesterday to 3.9 today. Not up a lot, but still the wrong direction. It sounds like he may get to move to a regular room on the oncology floor tomorrow. He's very sick of being in the hospital and getting quite grumpy about it. Grumpy is good. It means he's still full of piss and vinegar. We can work with that.
They gave E. some a medication to stimulate his appetite today called Megace. He managed to eat a small container of pudding before they informed him that he was scheduled for an Upper GI at 7:00 tonight (now postponed to 8:30 or 9:00 pm) and was allowed nothing more to eat or drink. So much for that! They increased the IV fluids as they are concerned about the low output. Despite the high volume of hydration they've already pumped into E., he's only peed a very minimal amount. I'm hoping this is only due to the fact that he was so dehydrated and once he gets caught up, input and output will be more proportional to each other.
The Internal Medicine doctor is concerned that there might be an obstruction affecting his eating, which is why she ordered the Upper GI. The concern is that the mass in the small intestines (at the base of the stomach) has possibly grown larger, thereby blocking food from going any further. So, for today's Upper GI, E. will drink some Barium (a thick, chalky white substance) and then they'll take a series of x-rays as they watch it move through his system.
E. dozed on and off throughout the day. He grimaced in pain frequently, but will no longer even tell me what his pain level is on the pain scale because he is sick of me suggesting pain medication. He's taken none today. He's watching a little Monday Night Football, excited to see local UNR boy Colin Kaepernick as the starting quarterback. His bilirubin went UP from 3.8 yesterday to 3.9 today. Not up a lot, but still the wrong direction. It sounds like he may get to move to a regular room on the oncology floor tomorrow. He's very sick of being in the hospital and getting quite grumpy about it. Grumpy is good. It means he's still full of piss and vinegar. We can work with that.
Sunday, November 18, 2012
Stable
E. is stable. He is doing well. He's had visitors trickle in and out all day long. They witnessed various moods and expressions throughout the day ... a little bit of loopiness, some grimaces of pain, a bit of orneriness thrown in for good measure, a dash of normalcy and a whole lot of sleepiness.
The GI doctor came in and did the scope first thing this morning. They actually brought the procedure to E. rather than bringing E. to the procedure. They wheeled a big cart with all the equipment right into E.'s room in the ICU and did the endoscopy right there. Pretty impressive. I waited in the waiting room, but returned after about 45 minutes. The doctor explained that he found one bleeding esophageal varice (you might recall that E. was found to have esophageal varices in the endoscopy done on November 1st). An esophageal varice is an abnormal, enlarged vein (like a varicose vein in the esophagus) that most often occurs in people with serious liver diseases. They develop when the normal blood flow from the liver is slowed. The blood then backs up into nearby smaller blood vessels (like those in the esophagus) causing them to swell. Here's the kicker: sometimes those esophageal varices can rupture causing LIFE-THREATENING bleeding. Glad I didn't know that yesterday. Anyways, the GI doctor used an elastic band (like a rubber band he said) to tie off the bleeding vein. Basically the vein gets "strangled" so it can no longer bleed.
The GI doctor said that the stomach and the entire digestive tract was inflamed, swollen and irritated. There were possibly other areas where bleeding was occurring as well, but he thinks that the esophageal varice was the main one. E.'s on a host of different medications, including a medication that slows the flow of blood from the organs to the portal vein, which reduces the pressure in the vein. All this will hopefully stop any internal bleeding that might still be occurring.
While the doctor was in there checking things out, he checked on the stents. The bile duct stent was still in place and doing the job it was supposed to. The stent in the pancreas (the one that was put there as a detour and we were hoping would slide out on its own) was still there as well, so the doctor went ahead and removed it. E. tolerated the procedure well, but was out of it for quite awhile afterward.
E.'s still resistant to take any pain medication, despite cajoling from others. He often grimaces in pain, but claims "it's not THAT bad." The nausea seems under control, yet he still has no appetite. Today, he took a total of two bites of pudding and one sip of soup. They are going to try to start him on a medication to stimulate his appetite to see if that might do any good. The nurse thought she might suggest a discharge for tomorrow or the next day, but when I ran into the doctor, she thought she might move him to a regular room tomorrow or the next day. Either way, he is clearly improving so that is good.
Oh, and on another good note, his bilirubin level today was 3.8!
The GI doctor came in and did the scope first thing this morning. They actually brought the procedure to E. rather than bringing E. to the procedure. They wheeled a big cart with all the equipment right into E.'s room in the ICU and did the endoscopy right there. Pretty impressive. I waited in the waiting room, but returned after about 45 minutes. The doctor explained that he found one bleeding esophageal varice (you might recall that E. was found to have esophageal varices in the endoscopy done on November 1st). An esophageal varice is an abnormal, enlarged vein (like a varicose vein in the esophagus) that most often occurs in people with serious liver diseases. They develop when the normal blood flow from the liver is slowed. The blood then backs up into nearby smaller blood vessels (like those in the esophagus) causing them to swell. Here's the kicker: sometimes those esophageal varices can rupture causing LIFE-THREATENING bleeding. Glad I didn't know that yesterday. Anyways, the GI doctor used an elastic band (like a rubber band he said) to tie off the bleeding vein. Basically the vein gets "strangled" so it can no longer bleed.
The GI doctor said that the stomach and the entire digestive tract was inflamed, swollen and irritated. There were possibly other areas where bleeding was occurring as well, but he thinks that the esophageal varice was the main one. E.'s on a host of different medications, including a medication that slows the flow of blood from the organs to the portal vein, which reduces the pressure in the vein. All this will hopefully stop any internal bleeding that might still be occurring.
While the doctor was in there checking things out, he checked on the stents. The bile duct stent was still in place and doing the job it was supposed to. The stent in the pancreas (the one that was put there as a detour and we were hoping would slide out on its own) was still there as well, so the doctor went ahead and removed it. E. tolerated the procedure well, but was out of it for quite awhile afterward.
E.'s still resistant to take any pain medication, despite cajoling from others. He often grimaces in pain, but claims "it's not THAT bad." The nausea seems under control, yet he still has no appetite. Today, he took a total of two bites of pudding and one sip of soup. They are going to try to start him on a medication to stimulate his appetite to see if that might do any good. The nurse thought she might suggest a discharge for tomorrow or the next day, but when I ran into the doctor, she thought she might move him to a regular room tomorrow or the next day. Either way, he is clearly improving so that is good.
Oh, and on another good note, his bilirubin level today was 3.8!
ICU
E. hasn't been feeling great. That's probably a pretty big understatement. The pain level is creeping up. The nausea is creeping up. The general misery is creeping up. He's not eating. He's not drinking. He's not doing much. After jumping through a bunch of hoops, I was able to make him an appointment with palliative care for Wednesday, because whatever they've got up their sleeve, it's got to be better than this.
He spent all Friday throwing up. He kept nothing down. We tried some toast. Up it came. We tried some Ensure. Up it came. I gave him some Zofran (anti-nausea meds) and waited. Then we tried some Ensure again. Up it came. Nothing, and I mean nothing, stayed down. It looked like brown bile, so we both thought maybe it was a good thing. Maybe some of that bile was coming up and out. Maybe it would bring that bilirubin number down.
Saturday, it seemed like he was feeling better. Then he began throwing up again. As I went to pour out the puke bucket, I noticed the color wasn't brown, but dark red. And it was filled with clots. Like lots of little chicken livers. I looked closer. Yup, blood. I quietly said to E., "I think we might need to head to the hospital because you're throwing up blood," and the man who usually fights and argues about anything medically related began to look for his shoes without another word. (In hindsight, I'm now wondering if he wasn't throwing up blood yesterday as well.)
By the time we reached the Emergency Room, his pain level was topping an 8. I got him into a wheelchair and they were able to triage him immediately and get us straight back into a room. Unfortunately, they could give him nothing until he was seen by a doctor and that took a while longer. Eventually they ran some labs on him (his bilirubin is STILL a 5.8! but he's not anemic yet which means he hasn't lost too much blood). He began throwing up in the E.R. and the color was then a brighter red, whatever than meant. They were able to give him some IV Zofran which helped settle things down quickly and the IV Dilaudid brought his pain down to a 5. Just so happens that a great Internal Medicine Doctor was on-call, which pleased the E.R. doc greatly. She chatted with us at great length and made the decision to admit E. ... to ICU.
So, E.'s in ICU (the one on the 5th floor instead of the one on the 1st floor, which is waaaaay nicer) This is definitely a step-up from the ICU post-brain surgery. They've got him hooked up to a variety of meds ... some to try to stop the bleeding, some anti-biotics, some of his regular meds now delivered via IV, some hydration, etc. He's getting the nausea meds, which are helping. They've also switched him to Morphine for pain. His pain is still at a 4, with break-through pain of a 6 here and there. The Morphine is lowering his blood pressure and making his breathing really shallow though, so they've had to put him on oxygen. The plan is to do a scope on him in the morning to try to see where this blood is coming from and go from there. When I asked about an anticipated length of stay, I was told, "Let's plan on 3 or 4 days right now and go from there." E. says, "3 or 4 days my a$$."
He spent all Friday throwing up. He kept nothing down. We tried some toast. Up it came. We tried some Ensure. Up it came. I gave him some Zofran (anti-nausea meds) and waited. Then we tried some Ensure again. Up it came. Nothing, and I mean nothing, stayed down. It looked like brown bile, so we both thought maybe it was a good thing. Maybe some of that bile was coming up and out. Maybe it would bring that bilirubin number down.
Saturday, it seemed like he was feeling better. Then he began throwing up again. As I went to pour out the puke bucket, I noticed the color wasn't brown, but dark red. And it was filled with clots. Like lots of little chicken livers. I looked closer. Yup, blood. I quietly said to E., "I think we might need to head to the hospital because you're throwing up blood," and the man who usually fights and argues about anything medically related began to look for his shoes without another word. (In hindsight, I'm now wondering if he wasn't throwing up blood yesterday as well.)
By the time we reached the Emergency Room, his pain level was topping an 8. I got him into a wheelchair and they were able to triage him immediately and get us straight back into a room. Unfortunately, they could give him nothing until he was seen by a doctor and that took a while longer. Eventually they ran some labs on him (his bilirubin is STILL a 5.8! but he's not anemic yet which means he hasn't lost too much blood). He began throwing up in the E.R. and the color was then a brighter red, whatever than meant. They were able to give him some IV Zofran which helped settle things down quickly and the IV Dilaudid brought his pain down to a 5. Just so happens that a great Internal Medicine Doctor was on-call, which pleased the E.R. doc greatly. She chatted with us at great length and made the decision to admit E. ... to ICU.
So, E.'s in ICU (the one on the 5th floor instead of the one on the 1st floor, which is waaaaay nicer) This is definitely a step-up from the ICU post-brain surgery. They've got him hooked up to a variety of meds ... some to try to stop the bleeding, some anti-biotics, some of his regular meds now delivered via IV, some hydration, etc. He's getting the nausea meds, which are helping. They've also switched him to Morphine for pain. His pain is still at a 4, with break-through pain of a 6 here and there. The Morphine is lowering his blood pressure and making his breathing really shallow though, so they've had to put him on oxygen. The plan is to do a scope on him in the morning to try to see where this blood is coming from and go from there. When I asked about an anticipated length of stay, I was told, "Let's plan on 3 or 4 days right now and go from there." E. says, "3 or 4 days my a$$."
Wednesday, November 14, 2012
Lab Results
Well, sh*t. Lab results aren't normal.
1) Bilirubin, Total: 5.8 (normal 0.0-1.1)
2) Alkaline Phosphatase: 484 (normal 25-150)
3) AST: 132 (normal 0-40)
4: ALT: 107 (normal 0-44)
To compare to the 10/29/12 lab results:
1) Bilirubin, Total: 8.4
2) Alkaline Phosphatase: 390
3) AST: 173
4) ALT: 128
So, there is some improvement. Except for the Alkaline Phosphatase. I'm not sure what that's about.
1) Bilirubin, Total: 5.8 (normal 0.0-1.1)
2) Alkaline Phosphatase: 484 (normal 25-150)
3) AST: 132 (normal 0-40)
4: ALT: 107 (normal 0-44)
To compare to the 10/29/12 lab results:
1) Bilirubin, Total: 8.4
2) Alkaline Phosphatase: 390
3) AST: 173
4) ALT: 128
So, there is some improvement. Except for the Alkaline Phosphatase. I'm not sure what that's about.
Tuesday, November 13, 2012
Labs
Who knew it would be so tough to get some dang labs?
To recap, a mass blocked E.'s bile duct, so his liver backed up with bile. On Thursday, they placed a stent in the duct so hopefully all that bile could drain. He needs some normal lab numbers so we can travel to MD Anderson in Texas to hopefully figure out some options to deal with this latest cancer recurrence. (He can't get any treatment with his liver numbers so out of whack. With the bile so high in his body, it's very toxic. Add poisonous chemo to the mix and it could be deadly.)
In my search for information online, it looks like it can take anywhere from days to weeks for the bile to drain. An added complication though is sometimes after a few weeks, the tumor begins to grow over the stent, causing another obstruction and so you're back to where you started. I also read about situations where the stent was unsuccessful for a variety of reasons. It seems reasonable to me that we need some labs to see where we are at. 1. If the stent is working and his numbers are down, we can make arrangements to get our butts to Texas. 2. If the stent isn't working and his numbers aren't decreasing, we need to come up with Plan B.
So, on Friday, I left message #1 with the GI nurse explaining how we were trying to get to the Cancer Hospital in Texas because we had no options here. In order to do that, we needed some normal labs. Because I figured the office would be closed on Monday, I was hoping we could get a lab slip before the weekend to hopefully collect labs on Monday.
On Monday, I discovered the GI office was indeed open. I left message #2. I again explained the situation. At 3:30 p.m., the nurse returned my call. Once again, I expressed how important these labs were to our situation. She indicated that she would discuss it with the doctor and call me back shortly.
What's the definition of "shortly" anyways?
This morning (it's Tuesday now, in case you lost track) I headed to our Primary Care Physician. I was in and out in five minutes. I left with a lab slip in hand. Thank you Dr. H.!
4:15 p.m. rolled around and the GI nurse called back. (That'd be 4:15 on Tuesday, not 4:15 on Monday.) Anyways, she informed me that when we left the office last week, we were given a lab slip that had a date for his next labs. NOT. I quickly thumbed through my folder of paperwork and I definitely did NOT have a lab slip. Anyways, they'd like E. to go in for labs on 11/29/12! That's 16 days from now!!! And a full 21 days from his stent placement!!! Clearly we are not on the same page here. Did the nurse not hear anything I said in my messages or my discussion with her? Our follow-up appointment with the GI that was scheduled for this Thursday was re-scheduled for December 4th! And the purpose of the appointment according to the nurse? To discuss further stent placement. Oh dear. Get us to Texas.
Crossing my fingers for some good lab results tomorrow.
To recap, a mass blocked E.'s bile duct, so his liver backed up with bile. On Thursday, they placed a stent in the duct so hopefully all that bile could drain. He needs some normal lab numbers so we can travel to MD Anderson in Texas to hopefully figure out some options to deal with this latest cancer recurrence. (He can't get any treatment with his liver numbers so out of whack. With the bile so high in his body, it's very toxic. Add poisonous chemo to the mix and it could be deadly.)
In my search for information online, it looks like it can take anywhere from days to weeks for the bile to drain. An added complication though is sometimes after a few weeks, the tumor begins to grow over the stent, causing another obstruction and so you're back to where you started. I also read about situations where the stent was unsuccessful for a variety of reasons. It seems reasonable to me that we need some labs to see where we are at. 1. If the stent is working and his numbers are down, we can make arrangements to get our butts to Texas. 2. If the stent isn't working and his numbers aren't decreasing, we need to come up with Plan B.
So, on Friday, I left message #1 with the GI nurse explaining how we were trying to get to the Cancer Hospital in Texas because we had no options here. In order to do that, we needed some normal labs. Because I figured the office would be closed on Monday, I was hoping we could get a lab slip before the weekend to hopefully collect labs on Monday.
On Monday, I discovered the GI office was indeed open. I left message #2. I again explained the situation. At 3:30 p.m., the nurse returned my call. Once again, I expressed how important these labs were to our situation. She indicated that she would discuss it with the doctor and call me back shortly.
What's the definition of "shortly" anyways?
This morning (it's Tuesday now, in case you lost track) I headed to our Primary Care Physician. I was in and out in five minutes. I left with a lab slip in hand. Thank you Dr. H.!
4:15 p.m. rolled around and the GI nurse called back. (That'd be 4:15 on Tuesday, not 4:15 on Monday.) Anyways, she informed me that when we left the office last week, we were given a lab slip that had a date for his next labs. NOT. I quickly thumbed through my folder of paperwork and I definitely did NOT have a lab slip. Anyways, they'd like E. to go in for labs on 11/29/12! That's 16 days from now!!! And a full 21 days from his stent placement!!! Clearly we are not on the same page here. Did the nurse not hear anything I said in my messages or my discussion with her? Our follow-up appointment with the GI that was scheduled for this Thursday was re-scheduled for December 4th! And the purpose of the appointment according to the nurse? To discuss further stent placement. Oh dear. Get us to Texas.
Crossing my fingers for some good lab results tomorrow.
Friday, November 9, 2012
Drop Bilirubin Drop
We just heard from the physician's assistant at MD Anderson. E.'s labwork (specifically all those liver numbers) have to get back into the normal range for us to make appointments. Drain bile drain. Drop bilirubin drop. And we're headed into a three-day-weekend. Shucks.
Thursday, November 8, 2012
Procedure
We checked in for E.'s procedure at 8:30 a.m. and they took him to the operating room at 10:15 a.m. They told me to be back in the waiting room within thirty minutes because they anticipated the surgery to take between 30 and 60 minutes. Imagine my anxiety when the doctor did not emerge until after 12:30 p.m.! Obviously the surgery took A LOT longer than they thought.
The good news of the day is that they were able to place the stent. It was extremely difficult. They actually had to place two stents. One stent went up into the pancreas and then they worked backwards to get one stent into the bile duct. The one into the bile duct has anchor, whereas the one into the pancreas does not, so the thought is that it will eventually just slide out (because it doesn't really need to be there). The stents are plastic, so they are temporary and only good for three months. After that, they will need to be replaced with another temporary plastic stent or a more permanent metal stent. (Metal stents are considered for more palliative care and not generally used when treatment options are still being considered, is my understanding.) The bile is draining, which is great. The bilirubin level should be going down in the next few days. His yellow skin and yellow eyes, on the other hand, will take weeks to improve though.
Here's where I get a bit confused. Remember that mass in the small intestine at the base of the stomach? In the original endoscopy last week, the verbal preliminary pathology report said it was NOT cancerous. (We still haven't heard about a final pathology report.) Now, remember the MRI said there was a group of enlarged lymph nodes that basically clustered together to form a mass or a tumor? I think maybe these two things are the same. I'm confused on this issue. The doctor who performed the procedure today said he was able to get samples from the "celiac axis lymphadenopathy" which were definitely cancerous. Basically, I'm not sure if we're talking about two separate masses or just one mass (and the original report was just wrong). This cancerous mass is extending into the pancreas, but no one has made it clear to us if the pancreas is involved. Until the final pathology report in back, we cannot confirm what kind of cancer this is. Everyone is assuming that this is spread from his esophageal cancer. We need to know specifically what kind of cancer it is, because every kind of cancer is treated differently.
The doctor was unable to reach the liver to biopsy the spots (cancer) on the liver. Again, it is assumed that this is spread from his esophageal cancer. As he explained to us, if the pathology report comes back from the lymph nodes as esophageal cancer, they may go ahead and accept that the liver is also esophageal cancer mets. If they want further confirmation, they will need to stick a long needle in E's side by his ribs to reach his liver and pull out tissue to biopsy. There could be a possibility that this is a different cancer, for example, liver cancer. Everyone's assumption though is that this is all metastasis from the esophageal cancer.
E. has not yet had a PET/CT scan, but obviously needs one. We are waiting to hear the plans with MD Anderson. The insurance company will not pay for two PET/CT scans back-to-back. We know that MD Anderson will want to run their own scans, so we are holding off getting a scan here. We are trying to play the insurance game right.
E. is still in significant amounts of pain and sleeping on and off most of the day. He has finally relented and taken a pain pill now and then. (He is not on high dose pain medication at this point. He is simply taking Percocet. The same stuff I took when I had a toothache.) Eating is still problematic, unfortunately. I wish there was more I could do for him.
S.
P.S. A big thanks to MAPper for the delicious dinner and the fixings for tomorrow as well. It was hugely appreciated after the long day at the hospital. Big hugs.
The good news of the day is that they were able to place the stent. It was extremely difficult. They actually had to place two stents. One stent went up into the pancreas and then they worked backwards to get one stent into the bile duct. The one into the bile duct has anchor, whereas the one into the pancreas does not, so the thought is that it will eventually just slide out (because it doesn't really need to be there). The stents are plastic, so they are temporary and only good for three months. After that, they will need to be replaced with another temporary plastic stent or a more permanent metal stent. (Metal stents are considered for more palliative care and not generally used when treatment options are still being considered, is my understanding.) The bile is draining, which is great. The bilirubin level should be going down in the next few days. His yellow skin and yellow eyes, on the other hand, will take weeks to improve though.
Here's where I get a bit confused. Remember that mass in the small intestine at the base of the stomach? In the original endoscopy last week, the verbal preliminary pathology report said it was NOT cancerous. (We still haven't heard about a final pathology report.) Now, remember the MRI said there was a group of enlarged lymph nodes that basically clustered together to form a mass or a tumor? I think maybe these two things are the same. I'm confused on this issue. The doctor who performed the procedure today said he was able to get samples from the "celiac axis lymphadenopathy" which were definitely cancerous. Basically, I'm not sure if we're talking about two separate masses or just one mass (and the original report was just wrong). This cancerous mass is extending into the pancreas, but no one has made it clear to us if the pancreas is involved. Until the final pathology report in back, we cannot confirm what kind of cancer this is. Everyone is assuming that this is spread from his esophageal cancer. We need to know specifically what kind of cancer it is, because every kind of cancer is treated differently.
The doctor was unable to reach the liver to biopsy the spots (cancer) on the liver. Again, it is assumed that this is spread from his esophageal cancer. As he explained to us, if the pathology report comes back from the lymph nodes as esophageal cancer, they may go ahead and accept that the liver is also esophageal cancer mets. If they want further confirmation, they will need to stick a long needle in E's side by his ribs to reach his liver and pull out tissue to biopsy. There could be a possibility that this is a different cancer, for example, liver cancer. Everyone's assumption though is that this is all metastasis from the esophageal cancer.
E. has not yet had a PET/CT scan, but obviously needs one. We are waiting to hear the plans with MD Anderson. The insurance company will not pay for two PET/CT scans back-to-back. We know that MD Anderson will want to run their own scans, so we are holding off getting a scan here. We are trying to play the insurance game right.
E. is still in significant amounts of pain and sleeping on and off most of the day. He has finally relented and taken a pain pill now and then. (He is not on high dose pain medication at this point. He is simply taking Percocet. The same stuff I took when I had a toothache.) Eating is still problematic, unfortunately. I wish there was more I could do for him.
S.
P.S. A big thanks to MAPper for the delicious dinner and the fixings for tomorrow as well. It was hugely appreciated after the long day at the hospital. Big hugs.
Wednesday, November 7, 2012
Procedure Prep
Thanks to some rescheduling at the GI office, E.'s going in for his procedure tomorrow. That means all the prep work needs to be completed today, so off we went to St. Mary's. Two and a half hours later, the EKG, the chest x-ray, the labs and all the paperwork were done.
The physician's assistant from MD Anderson phoned and discussed the recent turn of events. NOTHING can be done treatment wise until the bile is able to drain from the liver. Right now, the bile's creating a toxic situation in the body. Adding chemotherapy or anything else to the mix would be deadly. She asked me to e-mail her after the procedure to let her know if the stent was successfully placed. I asked if MD Anderson would have a Plan B if the procedure was unsuccessful. She was not sure, but would discuss it with Dr. A (the oncologist) who was currently out of town, but who would be returning in a couple of days. She needed to consult with Dr. A before scheduling any appointments. We are crossing our fingers that the stent will be successfully placed in the bile duct tomorrow and we will be able to get to MD Anderson and see what our options are as soon as possible.
The physician's assistant from MD Anderson phoned and discussed the recent turn of events. NOTHING can be done treatment wise until the bile is able to drain from the liver. Right now, the bile's creating a toxic situation in the body. Adding chemotherapy or anything else to the mix would be deadly. She asked me to e-mail her after the procedure to let her know if the stent was successfully placed. I asked if MD Anderson would have a Plan B if the procedure was unsuccessful. She was not sure, but would discuss it with Dr. A (the oncologist) who was currently out of town, but who would be returning in a couple of days. She needed to consult with Dr. A before scheduling any appointments. We are crossing our fingers that the stent will be successfully placed in the bile duct tomorrow and we will be able to get to MD Anderson and see what our options are as soon as possible.
Monday, November 5, 2012
Oncologist Appt
We met with the oncologist this morning.
The first thing we learned was that the biopsy results weren't back yet. What? We were told they'd be back on Friday and here it was Monday. Dr. B gave a call over to the lab and the pathologist gave a preliminary verbal report that she couldn't see any cancerous cells in the samples. What??? Seriously? Maybe this was all a bad dream after all.
The words hadn't even sunk in when Dr. B turned the page and his eyes got big. "Hold up," he said. He was scanning the MRI/MRCP report and it told a different story.
There are "multiple low-density lesions (approximately 5)" in the liver suspicious for metastasis. The largest mass is in the right lobe near the diaphragm and measures 3 cm. There is small free fluid adjacent to the liver.
"Bulky celiac axis lymphadenopathy is present." (My understanding is that this is like enlarged lymph nodes, suspicious for metastasis, clustered together.) This area measures approximately 5 cm. The mass extends into the pancreas and obstructs the common bile duct.
"The upper superior mesenteric vein and the portal vein are thrombosed. This is likely due to compression of invasion by tumor." As I understand it, these veins are clotted because the mass is pushing on them. Nice.
Right now the immediate issue is the bile duct. We need to get a stent in there so the liver can start working. E. is scheduled for an Endoscopic Ultrasound on Thursday to hopefully get a stent placed to open up that bile duct. There is concern that they won't be able to get past that mass in the small intestine. Yikes. If they are successful, they will also collect biopsies at the same time. We need to know what exactly we are dealing with. The assumption again is that this is mets from the esophageal cancer, but it might be another beast altogether.
Little can be offered for E. here in Reno. The oncologist already explained that the only thing that Reno could offer him would be chemotherapy. He agreed that MD Anderson might have more options and agreed it would be worthwhile to see what they had to say. We were scheduled to head to Texas in December for a simple follow-up, but needless to say, things have changed and we are hoping to be Texas bound as soon as possible.
It was suggested that E. be admitted to the hospital for hydration and pain management. I do believe I saw the middle finger. E. did manage to eat a protein bar today and drink some water. He also finally took his first pain pill, after writhing in pain for hours (days, really). Though he's been sleeping a lot, it looks like he's finally sleeping peacefully.
The first thing we learned was that the biopsy results weren't back yet. What? We were told they'd be back on Friday and here it was Monday. Dr. B gave a call over to the lab and the pathologist gave a preliminary verbal report that she couldn't see any cancerous cells in the samples. What??? Seriously? Maybe this was all a bad dream after all.
The words hadn't even sunk in when Dr. B turned the page and his eyes got big. "Hold up," he said. He was scanning the MRI/MRCP report and it told a different story.
There are "multiple low-density lesions (approximately 5)" in the liver suspicious for metastasis. The largest mass is in the right lobe near the diaphragm and measures 3 cm. There is small free fluid adjacent to the liver.
"Bulky celiac axis lymphadenopathy is present." (My understanding is that this is like enlarged lymph nodes, suspicious for metastasis, clustered together.) This area measures approximately 5 cm. The mass extends into the pancreas and obstructs the common bile duct.
"The upper superior mesenteric vein and the portal vein are thrombosed. This is likely due to compression of invasion by tumor." As I understand it, these veins are clotted because the mass is pushing on them. Nice.
Right now the immediate issue is the bile duct. We need to get a stent in there so the liver can start working. E. is scheduled for an Endoscopic Ultrasound on Thursday to hopefully get a stent placed to open up that bile duct. There is concern that they won't be able to get past that mass in the small intestine. Yikes. If they are successful, they will also collect biopsies at the same time. We need to know what exactly we are dealing with. The assumption again is that this is mets from the esophageal cancer, but it might be another beast altogether.
Little can be offered for E. here in Reno. The oncologist already explained that the only thing that Reno could offer him would be chemotherapy. He agreed that MD Anderson might have more options and agreed it would be worthwhile to see what they had to say. We were scheduled to head to Texas in December for a simple follow-up, but needless to say, things have changed and we are hoping to be Texas bound as soon as possible.
It was suggested that E. be admitted to the hospital for hydration and pain management. I do believe I saw the middle finger. E. did manage to eat a protein bar today and drink some water. He also finally took his first pain pill, after writhing in pain for hours (days, really). Though he's been sleeping a lot, it looks like he's finally sleeping peacefully.
Friday, November 2, 2012
MRI and MRCP
E. underwent and MRI and MRCP of his abdomen today. The hardest part was that he wasn't allowed to have anything to eat or drink for six hours prior to the tests and the tests weren't scheduled until 2:30 p.m.! Not that E. is eating much these days, but he sure was thirsty by the time he was finished.
Again, the test results would be available this afternoon, but since Dr. N wasn't around, we'd have to wait through the weekend. I went ahead and scheduled an appointment with the oncologist, Dr. B for Monday morning to get the ball rolling. Hopefully we'll have some information by then and get a plan in place.
Again, the test results would be available this afternoon, but since Dr. N wasn't around, we'd have to wait through the weekend. I went ahead and scheduled an appointment with the oncologist, Dr. B for Monday morning to get the ball rolling. Hopefully we'll have some information by then and get a plan in place.
Thursday, November 1, 2012
Endoscopy
E. underwent his endoscopy without any complications. He even came out of anesthesia with ease, which he doesn't always do. Dr. N was quick to meet me at E.'s bedside with a diagram, which I knew wasn't good news. He drew me a picture of E.'s stomach and the mass he found in the small intestine, specifically in the "duodenal bulb." He said based on E.'s history, he'd guess it was mets from the esophageal cancer, but he took biopsies which would be sent out to the lab. According to the preliminary report, the findings were as follows:
1. Duodenal bulb lesion with partial obstruction. Lesion seemed firm and friable. Biopsies were obtained. There is concern for invasion of the duodenal wall by metastatic adenocarcinoma.
2. Duodenitis.
3. Gastritis.
4. Esophageal varices.
The biopsies should be back tomorrow, but Dr. N would be out of the office, so we won't know anything until Monday. Grrr.
1. Duodenal bulb lesion with partial obstruction. Lesion seemed firm and friable. Biopsies were obtained. There is concern for invasion of the duodenal wall by metastatic adenocarcinoma.
2. Duodenitis.
3. Gastritis.
4. Esophageal varices.
The biopsies should be back tomorrow, but Dr. N would be out of the office, so we won't know anything until Monday. Grrr.
Tuesday, October 30, 2012
Yellow
About three weeks ago, the stomach bug ran through our house. During that week, our household consisted of 11 and it hit all but two of us. Nausea, vomiting and diarrhea. Fun stuff. The good news is that it only lasted a couple of days. Well, except for one of us. E. seemed to get the same stuff as the rest of us, only it seemed to hang on and never let go. And it got worse and worse. And the symptoms kept piling up.
Last week, I drug him to the doctor. The doctor agreed with E. that his immune system probably just wasn't as strong as it used to be and so it was going to take him longer than the rest of us to get rid of this bug. Things didn't seem right to me though. This seemed more than the stomach bug. E. was having stomach pains/cramps, nausea (although no vomiting), bloating, gas, intermittent diarrhea, back pain, fatigue, and loss of appetite. I was sure he was dehydrated. And I was sure his blood sugars were completely out of whack. He hadn't had a decent night of sleep in weeks. He looked downright miserable. Oh and top of everything else, he passed a couple of kidney stones in midst of all this.
Yesterday, back to the doctor we went. She suspected a possible bowel obstruction and recommended a visit with a gastro-intestinal doctor and a colonoscopy. She sent us off with a lab slip as well. While E. was getting his lab work, I was on the phone making his GI appt. Turns out, you can't just make an appt for a colonoscopy when you're having symptoms ... you actually have to have a consultation first. Thankfully, they had a cancellation so we were able to get an appt for today.
And that brings us to today. E.'s lab work came back. He has a urinary tract infection. And a kidney infection. And something is going on with his liver. Like something crazy.
The four lab tests that have to do with liver are:
1) Bilirubin, Total ... normal 0.0-1.1 (E.'s = 8.4)
2) Alkaline Phosphatase ... normal 25-150 (E.'s = 390)
3) AST ... normal 0-40 (E.'s 173)
4) ALT ... normal 0-44 (E.'s 128).
So, a colonoscopy is out right now because there is no way he can handle the contrast. He's been taken off a couple of his meds because they'll make his liver even worse. He's been given a few prescriptions ... 1. antibiotics for the infections, 2. anti-itch meds (high bilirubin levels make you itch horribly ... who knew?), 3. anti-gas meds, and 4. anti-nausea meds. He has more lab work to get done to test for a variety of Hepatitises (can you make Hepatitis plural?), the Epstein Barr Virus, as well as a few other things. He's going in for an endoscopy on Thursday. And he has an MRI and a MRCP of his liver on Friday. I have no idea what an MRCP is yet and haven't had a chance to look it up, but it is done at the same time as the MRI and done at the radiation department at the hospital as well, so I'm assuming it's something similar.
He's lost 20 pounds in 3 weeks. And yes, he's yellow. Even his eyeballs are yellow.
Last week, I drug him to the doctor. The doctor agreed with E. that his immune system probably just wasn't as strong as it used to be and so it was going to take him longer than the rest of us to get rid of this bug. Things didn't seem right to me though. This seemed more than the stomach bug. E. was having stomach pains/cramps, nausea (although no vomiting), bloating, gas, intermittent diarrhea, back pain, fatigue, and loss of appetite. I was sure he was dehydrated. And I was sure his blood sugars were completely out of whack. He hadn't had a decent night of sleep in weeks. He looked downright miserable. Oh and top of everything else, he passed a couple of kidney stones in midst of all this.
Yesterday, back to the doctor we went. She suspected a possible bowel obstruction and recommended a visit with a gastro-intestinal doctor and a colonoscopy. She sent us off with a lab slip as well. While E. was getting his lab work, I was on the phone making his GI appt. Turns out, you can't just make an appt for a colonoscopy when you're having symptoms ... you actually have to have a consultation first. Thankfully, they had a cancellation so we were able to get an appt for today.
And that brings us to today. E.'s lab work came back. He has a urinary tract infection. And a kidney infection. And something is going on with his liver. Like something crazy.
The four lab tests that have to do with liver are:
1) Bilirubin, Total ... normal 0.0-1.1 (E.'s = 8.4)
2) Alkaline Phosphatase ... normal 25-150 (E.'s = 390)
3) AST ... normal 0-40 (E.'s 173)
4) ALT ... normal 0-44 (E.'s 128).
So, a colonoscopy is out right now because there is no way he can handle the contrast. He's been taken off a couple of his meds because they'll make his liver even worse. He's been given a few prescriptions ... 1. antibiotics for the infections, 2. anti-itch meds (high bilirubin levels make you itch horribly ... who knew?), 3. anti-gas meds, and 4. anti-nausea meds. He has more lab work to get done to test for a variety of Hepatitises (can you make Hepatitis plural?), the Epstein Barr Virus, as well as a few other things. He's going in for an endoscopy on Thursday. And he has an MRI and a MRCP of his liver on Friday. I have no idea what an MRCP is yet and haven't had a chance to look it up, but it is done at the same time as the MRI and done at the radiation department at the hospital as well, so I'm assuming it's something similar.
He's lost 20 pounds in 3 weeks. And yes, he's yellow. Even his eyeballs are yellow.
Friday, October 19, 2012
Vision Changes
A few months ago, E. went to the eye doctor and discovered that he needed stronger prescription glasses. Such is life as you get older, eh? He was also due for another yearly "threshold test." So, last week, he completed the threshold tests and brought home the results. Here are the side-by-side comparisons. Now, I'm not an optometrist, but I'm thinking there's a pretty big difference here. And I'm guessing the black spots aren't good.
Threshold Tests
Left eye 2011 on top
Left eye 2012 on bottom
Right eye 2011 on top
Right eye 2012 on bottom
I might have freaked out just a tad. Holy crap! Are you blind? Can you see? Can you drive? What do we do? Is there anything we can do? As usual, E. was very calm about the whole deal. "We're supposed to make an appointment with the neurologist about it, I guess." I called the neurologist and explained the situation and asked to make an appointment. I think they were as confused as I was. "Are you sure you weren't supposed to make an appointment with a neuro-opthamologist? We deal with his seizures. They would deal with any eye issues." Ummm, let me make some phone calls and call you back.
I called the optometrist's office back and had a very entertaining conversation (after getting the introduction information out of the way).
Me: "These threshold test results seem concerning. What are we supposed to do from here?"
Office staff: "Make an appointment with your neurologist. We told your husband that."
Me: "Yes, but we called the neurologist and they said they only deal with seizures and not eyes."
Office staff: "Oh."
Me: "They said that perhaps we were supposed to be referred to a neuro-opthamologist?"
Office staff: "If you were supposed to have been referred to a neuro-opthamologist, we would have told you that."
Me: "Okay then. So we do nothing?"
Office staff: "I guess not. We'll see you again in a year for another threshold test."
Me: "Can he drive?"
Office staff: "The doctor didn't say otherwise."
Allrightythen. Everyone feel better now?
Just to let you know, a couple of the kids had eye appointments yesterday, so I was able to talk to the optometrist directly. E.'s field of vision has definitely been effected but his eyes have probably compensated with extra movement and what-have-you. He was surprised that E.'s neurologist didn't want to see him, but agreed that it would be more of an informational meeting than anything. He didn't think a referral to the neuro-opthamologist was necessary because typically they want to try to figure out the CAUSE of the loss of the field of vision. We know the cause ... brain tumors, brain surgery, brain radiation, and diabetes on top of all that. It's not really a shocker. There isn't anything that can be done about it. It may eventually get to the point where E. cannot drive. He suggested that E. be careful driving, especially at night. I expressed how shocked I was at the dramatic difference between last year's test and this year's test. The optometrist agreed, but told me that he was surprised that last year's test showed so little loss. He had expected more decline at that time. Perhaps E. is making up for lost time then. Yikes.
Tuesday, October 2, 2012
"Looks Good"
I knew we wouldn't hear anything over the weekend, so I pushed it out of my mind until Monday morning. I figured I'd give it until lunch time until I'd start bugging them. I started looking at the clock by 11:30. I reasoned they'd be back in the office no later than 1:30. By 1:20, I could take it no longer and I called. I got a hold of the nurse (the very nurse that saved the day on E.'s very first day of chemotherapy way back when is now Dr. T.'s nurse) who said she'd track down the results and talk to the doctor and get back to me.
A few minutes later, she called me back and informed me that the both Dr. T. and Dr. L. had reviewed the MRI results and that everything "looks good." They'll see us again in February.
Big smiles.
S.
A few minutes later, she called me back and informed me that the both Dr. T. and Dr. L. had reviewed the MRI results and that everything "looks good." They'll see us again in February.
Big smiles.
S.
Saturday, September 29, 2012
No Results Yet
We never heard from the radiation oncologist, so we have no idea how the MRI looked.
And you know what? We never thought about it once. At all. All day long. Until right now. When I thought about updating the blog. How weird is that? For the first time in 3 1/2 years, cancer wasn't the first thing on our minds. We weren't waiting by the phone willing it to ring. We weren't making phone calls trying to track down results. We weren't driving across town thinking that maybe our presence would get answers.
We went to breakfast. We ran errands. We picked up Peanut from preschool. We went to the park. We did kid stuff. We cheered a football team to victory. And we didn't talk cancer. Not one single time. We never even wondered about that MRI.
But I'd be lying if I said I wasn't wondering now.
I wonder why that doctor didn't call.
S.
And you know what? We never thought about it once. At all. All day long. Until right now. When I thought about updating the blog. How weird is that? For the first time in 3 1/2 years, cancer wasn't the first thing on our minds. We weren't waiting by the phone willing it to ring. We weren't making phone calls trying to track down results. We weren't driving across town thinking that maybe our presence would get answers.
We went to breakfast. We ran errands. We picked up Peanut from preschool. We went to the park. We did kid stuff. We cheered a football team to victory. And we didn't talk cancer. Not one single time. We never even wondered about that MRI.
But I'd be lying if I said I wasn't wondering now.
I wonder why that doctor didn't call.
S.
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