Hey everyone,
Below is the obituary and information for services coming up Friday and Saturday. After the church service on Saturday, there will be a Celebration of Life in Williamsport, MD at the fire hall, where we hope to tie up our sadness with lots of great memories and belly laughs. We believe that is how Dad would want his memory to be carried on. Please join us and share you stories!
http://obit.minnichfh.com/obitdisplay.html?id=1378191&listing=Current
Wednesday, April 30, 2014
Sunday, April 27, 2014
Dad says, "I'm going home......"
On Friday, we three "kids" received a call from Mom around 2pm. Dad had asked for us to come. Earlier that afternoon, Dad had asked to be shaved, made a donation to Hospice stating there would be no reason for them to come back on Monday, and said he was "going home."
Through the weekend we have been by his side and have continued to care for him. Although his flesh is unrecognizable, Jim Snead is in there. He's asked for a beer, but said he'd drink it later, followed up with a comment about the "light weights." He's ordered off a menu from somewhere. He's been impatient with how long this has taken, and has been waving to folks we cannot see.
This morning he has plainly stated that he is going home, and we pray that it is so.
Through the weekend we have been by his side and have continued to care for him. Although his flesh is unrecognizable, Jim Snead is in there. He's asked for a beer, but said he'd drink it later, followed up with a comment about the "light weights." He's ordered off a menu from somewhere. He's been impatient with how long this has taken, and has been waving to folks we cannot see.
This morning he has plainly stated that he is going home, and we pray that it is so.
Wednesday, April 16, 2014
Collecting Data and Weighing His Options Before His Next "Move"
Dad continues to rest comfortably in his home, surrounded by his felines and our family. In addition to regular visits from Hospice, we've also brought in 24 hour caregivers, as well. Although lately Dad's willingness to move from the bed has been minimal, he still tries, and my mom cannot move him by herself.
Dad has met with a friend from the funeral home. He's ironed out his arrangements, to include who is to speak and when at his service and celebration of life and who will be his pall bearers. He's the planner, and continues to analyze and weigh his options every step of this journey. Since he's finalized those arrangements, I've observed him to sleep more and eat/drink less.
I do need to share a most exciting series of conversations I've had with him over the last 4 days. You're probably thinking, "What could possibly be exciting about all this?????"
Trust me, this is good stuff......
On Saturday, Dad fell into the deepest sleep we had witnessed up to that point. He was out. Nothing was waking him. At one point, he didn't wake, but he winced in pain. Jill tried to get him to respond to a request for pain meds, but he just wasn't waking up. Later that night, he started mumbling that "someone was going to be held responsible for those treatments...." I went to him and sat with him on his bed. He opened his eyes and told me that he had been misdiagnosed. When I told him he had not been misdiagnosed, he looked me square in the eye, with a very puzzled look on his face, and said, "You mean to tell me that I still have pancreatic cancer? That makes no sense at all." At the time, I chalked it up to the disease, a dream, the end of life confusion, maybe the pain meds. I didn't think too much of it, really.
On Monday, while Dad was sleeping he started asking for candy and pretzels to eat. I jumped up to provide him with a candy buffet: Reese's PB cups, Twizzlers, Mary Jane's, Good & Plenty. He opted for part of a PB cup and Twizzler, but seemed disappointed with how the candy was going down. He really forced it. He fell back to sleep for a little while and then I woke him up when I was going to leave. He perked up and said, "Before you leave, I would like for you to help me. The question that I have..... I have is a dilemma....I need to know when I'm going to get back to the way I was.....when I felt good and I could eat whatever I want and not feel full or sick."
"Dad, have you felt like that recently?"
"Oh yeah. I can eat whatever I want, and then I see you and you tell me that I still have pancreatic cancer."
"So you have periods that are like dreams where you aren't sick, and you feel good, and you eat what you want?"
"Yeah."
"And then you wake up and are still sick and feel crappy. Is that why you asked me if you still had pancreatic cancer the other night?"
"Yeah."
"So in these dreams where you feel good are there other people there with you?"
"Oh yeah."
"Who is there?"
"Everyone. Everyone is there."
"Like who?"
"Everyone."
Then Mom asks, "Are your parents there? Are Pop and Grandma there? Are my parents there?"
"Oh yeah. Everyone is there."
"Is Jesus there?"
"Sometimes He is and sometimes He isn't."
At that point, it really seemed as if he was experiencing what he determined to be a "dilemma." Even at this point, Jim Snead is analyzing his options and gathering the necessary data to make a final determination....this life, or the next? Mom and I reassured him that it was okay to be with "everyone" and to go enjoy his life where he was no longer sick and he could eat what he wants and do what he wants. We would join him one day, as well. It was a most amazing conversation, and one I was excited to have with my father!
Although physically, the man that lays in that bed each day is not my dad, the man inside that head of his is still my dad. Those one liners still come out; his opinions are still put out there; and the need to analyze this most current "situation" is evident. I will miss him in the flesh very much, but I will always enjoy his spirit.
Prayers for all of us right now. We may have him with us another week.....maybe. Pray for a peaceful passing and transition from this life to his next.
Much love to all......Jen
Dad has met with a friend from the funeral home. He's ironed out his arrangements, to include who is to speak and when at his service and celebration of life and who will be his pall bearers. He's the planner, and continues to analyze and weigh his options every step of this journey. Since he's finalized those arrangements, I've observed him to sleep more and eat/drink less.
I do need to share a most exciting series of conversations I've had with him over the last 4 days. You're probably thinking, "What could possibly be exciting about all this?????"
Trust me, this is good stuff......
On Saturday, Dad fell into the deepest sleep we had witnessed up to that point. He was out. Nothing was waking him. At one point, he didn't wake, but he winced in pain. Jill tried to get him to respond to a request for pain meds, but he just wasn't waking up. Later that night, he started mumbling that "someone was going to be held responsible for those treatments...." I went to him and sat with him on his bed. He opened his eyes and told me that he had been misdiagnosed. When I told him he had not been misdiagnosed, he looked me square in the eye, with a very puzzled look on his face, and said, "You mean to tell me that I still have pancreatic cancer? That makes no sense at all." At the time, I chalked it up to the disease, a dream, the end of life confusion, maybe the pain meds. I didn't think too much of it, really.
On Monday, while Dad was sleeping he started asking for candy and pretzels to eat. I jumped up to provide him with a candy buffet: Reese's PB cups, Twizzlers, Mary Jane's, Good & Plenty. He opted for part of a PB cup and Twizzler, but seemed disappointed with how the candy was going down. He really forced it. He fell back to sleep for a little while and then I woke him up when I was going to leave. He perked up and said, "Before you leave, I would like for you to help me. The question that I have..... I have is a dilemma....I need to know when I'm going to get back to the way I was.....when I felt good and I could eat whatever I want and not feel full or sick."
"Dad, have you felt like that recently?"
"Oh yeah. I can eat whatever I want, and then I see you and you tell me that I still have pancreatic cancer."
"So you have periods that are like dreams where you aren't sick, and you feel good, and you eat what you want?"
"Yeah."
"And then you wake up and are still sick and feel crappy. Is that why you asked me if you still had pancreatic cancer the other night?"
"Yeah."
"So in these dreams where you feel good are there other people there with you?"
"Oh yeah."
"Who is there?"
"Everyone. Everyone is there."
"Like who?"
"Everyone."
Then Mom asks, "Are your parents there? Are Pop and Grandma there? Are my parents there?"
"Oh yeah. Everyone is there."
"Is Jesus there?"
"Sometimes He is and sometimes He isn't."
At that point, it really seemed as if he was experiencing what he determined to be a "dilemma." Even at this point, Jim Snead is analyzing his options and gathering the necessary data to make a final determination....this life, or the next? Mom and I reassured him that it was okay to be with "everyone" and to go enjoy his life where he was no longer sick and he could eat what he wants and do what he wants. We would join him one day, as well. It was a most amazing conversation, and one I was excited to have with my father!
Although physically, the man that lays in that bed each day is not my dad, the man inside that head of his is still my dad. Those one liners still come out; his opinions are still put out there; and the need to analyze this most current "situation" is evident. I will miss him in the flesh very much, but I will always enjoy his spirit.
Prayers for all of us right now. We may have him with us another week.....maybe. Pray for a peaceful passing and transition from this life to his next.
Much love to all......Jen
Wednesday, March 19, 2014
It's no "coincidence"
Dad was released to Hospice care in his home yesterday. It was a fast and furious several hours, but with a little bit of teamwork, we created a very cozy living arrangement. It didn't take long for the felines to test out the new hospital bed and snuggle right in, even before Dad got home.
Before Dad left the hospital, one of the nurses who took care of him over the last couple of weeks stopped by on her day off to say good-bye. She was one of my favorites, and an absolute love, and you could tell she enjoyed Dad's one-liners. Pictured above is a copy of a note she wrote to him.
It is no coincidence that her name is "Faith."
Monday, March 17, 2014
Home to Hospice
Thinking about the end of life process in someone who is terminally ill is very difficult. We wonder when. We wonder what it will look like. We wonder what it "feels" like for our loved one. Just as I've turned to the internet to research this cancer, the doctors on Dad's team, and all of the treatments and surgeries, I've also turned to it looking for how we can help Dad move through these final stages. I actually want to share a resource with everyone because I appreciate the grace and love with which the site was written. Credit was given to Hospice: http://www.craigscause.ca/final-stage-of-death/
So after reading that, observing the changes in Dad the last week or so, and listening to the doctors, what became more clear was the need to introduce options. More intense care is needed. The tubes, the drains, the poking and prodding and endless procedures.......enough. Dad has had enough. We already know that there is nothing left to do to treat the cancer, and all care at this point would be palliative. So, the very, very difficult decision has been made to allow the doctors to release Dad to Hospice care in his home in WV. He just wants to go home and be in his house with his TV and all his stuff, and let's be honest.......with those felines. Once that is all set up and the appropriate equipment has been delivered to his house, we will transport Dad home.
I have observed Dad to become more confused with each day. He sleeps most of the time, and while floating in and out of sleep, he may ask a question about something from my childhood. ("Do you have any track meets this week?") Yet, he still throws in that occasional smarty pants response to a question, which has become something Dad is known for on Weinberg 5. He's got nurses and techs that come to visit and check in on him, even though he may not be their patient on that day. His "quips" have become quite popular. That sense of humor is still there:)
Much leaking still commences from time to time, and we pray a lot. Your prayers for strength and guidance and peace are much appreciated. We have been able to "keep on keeping on" b/c of your prayers. There's no doubt about. We appreciate all that everyone is doing for us so that we can be here with Dad. It helps to be able to divide and conquer with these tasks b/c it is all very overwhelming. The child care, the play dates, the kitty sitting.....everything....thank you!
Pray for a smoooooth transport and transition from hospital to home.
Much love to all......Jen
Friday, March 14, 2014
Preparation
I'm leaking. As I sit here and watch Dad sleep, I leak. Tears. Snot. All of it is just rolling out and pouring down my face. I'd describe myself as nothing short of a hot mess at the moment.
The rapid deterioration in the last week has caught me by surprise. I suppose a bit of that has been some aspect of denial. As someone close to my dad once said to me when this diagnosis first occurred, "Jen, if anyone can beat this, it's your dad." For the last 18 months, I have believed that to be true. My whole life my father has been "one tough dude," and I believe everyone else would concur on that note. However, as I sit here with my head on Dad's feet and watch him sleep, I see this little old man who put up one helluva fight, and now he's just tired......and I realize that the changes in his physical and emotional being are signs of preparation.... of shutting himself down.
Ugh....I'm leaking again.....
Earlier this evening, after Mom and Jill left, Dad asked me if I were "taking all of this in stride." "Yup," I responded. "Good," he said rather sternly. Sounds like Dad, right? He's not only preparing himself, now he's preparing me.
The rapid deterioration in the last week has caught me by surprise. I suppose a bit of that has been some aspect of denial. As someone close to my dad once said to me when this diagnosis first occurred, "Jen, if anyone can beat this, it's your dad." For the last 18 months, I have believed that to be true. My whole life my father has been "one tough dude," and I believe everyone else would concur on that note. However, as I sit here with my head on Dad's feet and watch him sleep, I see this little old man who put up one helluva fight, and now he's just tired......and I realize that the changes in his physical and emotional being are signs of preparation.... of shutting himself down.
Ugh....I'm leaking again.....
Earlier this evening, after Mom and Jill left, Dad asked me if I were "taking all of this in stride." "Yup," I responded. "Good," he said rather sternly. Sounds like Dad, right? He's not only preparing himself, now he's preparing me.
Tough day all the way around.....
For whatever reason, this posting didn't publish Wednesday night........
Those peaks of strength we witnessed over the weekend have since faded. Dad is getting weaker and shows no real interest in eating. Today he's had bouts of diarrhea and vomiting and a myriad of other issues. Throughout the day, different members of Dad's amazing team of docs visited the room to see the family. It appears that the CA19-9 levels are over 5000 and there is a strong belief that the cancer is on the move. The hope of doing a gastric bypass surgery to alleviate the eating issues has also since faded. The only solution now is to put in a GJ tube in Dad's gut for him to receive nutrition of some sort. Yes, it seems we are at that point of palliative care versus treatment and/or prevention of metastasis. It has been a day of devastating news.
Those peaks of strength we witnessed over the weekend have since faded. Dad is getting weaker and shows no real interest in eating. Today he's had bouts of diarrhea and vomiting and a myriad of other issues. Throughout the day, different members of Dad's amazing team of docs visited the room to see the family. It appears that the CA19-9 levels are over 5000 and there is a strong belief that the cancer is on the move. The hope of doing a gastric bypass surgery to alleviate the eating issues has also since faded. The only solution now is to put in a GJ tube in Dad's gut for him to receive nutrition of some sort. Yes, it seems we are at that point of palliative care versus treatment and/or prevention of metastasis. It has been a day of devastating news.
It is possible that Dad will be discharged on IV fluids and antibiotics. He wants to go home for at least a day to put some things in order, but then has agreed to move in with Matt, Sam, and me. Mom cannot do this alone. Everyone is always welcome to my home to visit!
In addition to the difficulties with my dad, my aunt (mom's sister) has lost the ability to talk or use her arms after having a procedure performed earlier this week.
Tough day all the way around.....
Sunday, March 9, 2014
From Medical ICU to Normal WBC in 7 days!
It's amazing the progress that Dad has made in 7 days!!! A week ago Dad had been flown from Hagerstown to Baltimore and admitted to ICU. He was diagnosed with his 5th septic (yes, FIVE!) infection, since diagnosis in September 2012.
He was moved out of ICU on Monday and it was also at that time that intervention radiologists placed a drain through his side into his liver to drain the infections. Yes, this is the SAME procedure that had been done in December, and it does involve quite a bit of pain. So yeah, Percocet is back on the scene.
The same three bugs that were having a party on his liver in December returned for an encore: klebsiella, entercoccus, and enterobacter. These are all bacteria that are naturally occurring in our gut, and every time Dad has a new stent placed, they take over. On Thursday, another CT scan was performed, and 2 more abscesses were observed. Sooooo.....2 more drains were placed into Dad's side yesterday. Yes....1 drain + 2 drains = 3 drains coming out of his side.....all filling up with pus. He's like a Christmas tree with various ornaments...:)
Some good news reported today was that Dad's white blood cell count (WBC) is normal, AND he walked a lap around the hospital floor! This is great news b/c it appears that we are starting to get the infection controlled. I can't help but wonder if the "under-age contraband" that was smuggled in last night may have been the best meds yet.....and as much as most of you think I'm talking about BEER, I'm actually referring to 3 grandchildren! No one under the age of 18 is be in the rooms, but the nurses did bend for us a little. It was good all the way around.
Hmmmmm.....how to smuggle in the felines............
I am amazed at the improvements in Dad's health in such a short time, and it is without a doubt a response to the many, many prayers surrounding my family. Please continue to keep us all in your thoughts and your prayers. Some of you have expressed an interest in visiting with Dad for a bit, and regardless of what Dad says, please consider doing so. It really does do him well to chatter about politics and sports with someone other than the same faces he sees most of the time.
More news.....just in from my sister who is in Baltimore now.....Dad reported feeling stronger today than he has in a while. Woo-hoo!
Much love to all. Good night, everyone....................Jen
Monday, March 3, 2014
Out of MICU!
The abscess has been drained and Dad has been moved to a surgical floor. No more ICU! He's in quite a bit of pain, but he's got some percocet on board and hopefully that will keep the pain to a tolerable level. Hopefully he'll be able to take in some liquid foods tonight and start to gain more of his strength back. Right now, Judge Judy is on the TV, and Mom & Dad are napping. Hm, seems like things are feeling a little more normal.
Thank you for your thoughts and prayers.
Another uneventful night.....
Dad continues to push on, maintaining stable vitals and no fever. He's on broad spectrum antibiotics to kill the Klebsiella (yup, again) infection and we're waiting for "his turn" with interventional radiology to place another drain into his liver.
Dr. Alexander was just in too. He's the surgical oncologist who's been with Dad since Day 1. He said Dad looks good and spoke of moving him to a surgical floor.....no more ICU??? How fantasic would THAT be? VERY!
So let me go backwards a bit......
On Friday, just 3 days ago, we met with Dr. Alexander to discuss surgical options to #1) address the infections that have always followed the stent placements (Dad had a 2nd duodenal stent placed 2/11/14) and #2) to fix the repeating problem of the duodenum strangulating, which has prevented food from passing to the small intestine. Dad's been on a liquid only diet for almost a month now, and that's just no fun for someone whose always enjoyed a good steak!
On Friday, there was a surgery plan. Dad was going to be admitted to UMMC on Tuesday for 5 days of nutritional therapy. On March 10, Dr. A would perform a surgery to bypass the area where the tumor is, with the hope that eventually, Dad could resume eating more solid food, get more nutrients absorped into his body and get his strength back.
BUT......Klebsiella strikes again, throwing a wrench into that plan.
From all of that background info, here's what we all need to hold onto and pray for.....Dr. Alexander, a surgical oncologist, who has seen all kinds of conditions, said DAD LOOKS GOOD. He also spoke of moving Dad to a surgical floor out of ICU, which is also very good. He also spoke to moving forward with the surgery once the infection is under control. "Under control" meaning two days of normal blood cultures and labs. I don't know how long that might take. From the condition Dad was in on Saturday afternoon (and there are dear friends/neighbors that can attest to it) to his condition this morning, he is a different person.
All of you prayer warriors, thank you, and thank you to the countless others who continue to love us and care for us in so many ways. I know there are friends and neighbors who are taking care of plowing and shoveling, vehicle inspections, and the "precious" Siamese (who are spoiled beyond any level my siblings and I ever experienced as kids), and the endless cards of support. My husband and son have been loved on too with special dinners and playdates, which keeps Sam's mind off the fact that Mommy has not been home much b/c Pap is not well. He experiences things quite deeply, so these distractions are appreciated!
I'll hop back on and update if anything changes. Much love to all.......Jen
Sunday, March 2, 2014
In MICU at UMMC Baltimore
Hi everyone. Sorry it has taken so long to get this going again. I think everyone wants to know the immediate news, so I'll start and then go backward.
VERY suddenly, Dad became very weak, confused, and unable to walk yesterday. He was sleeping all the time and would only stir for a moment when Mom woke him. Mom had to call the neighbor to help lift Dad, which led to a call to me and my arrival back "home" to WV. When I got there, members of our Honeywood family was all astir, twirling around to do as much as they could to help. Genetics doesn't always determine whose included in your family. We all know that. Dad was sleeping and did not awake at all for me. The felines were agitated, jumping up on Dad and chirping at me. They had quite a bit to say. Animals are extraordinary in their sense of knowing when someone is just "not right," and they were spot on. Dad was definitely "not right." It was quite evident that medical care was an immediate need.
911 was called. After the EMTs got Dad on the stretcher, Rummy (aka, the feline that owns Dad) plopped himself right up on Dad's stomach and had no intentions on moving. It was not surprising to me, but then again, it was.
I rode with Dad to Meritus in Hagerstown. Turns out one of EMTs was a student of mine just a "few" (a-hem) years ago. Meritus ER staff was really great. The RN, Bryan, was truly top notch. Once he got a 104 temp on Dad, he flew into supernova speed. ER doc got on the phone with University and the plan was to get dad transferred to Baltimore when a bed opened up. In the meantime, they would keep Dad comfortable and get him hydrated.
After the first bag of saline, Dad's vitals started to improve and he could answer questions much better. All were impressed with how much better Dad had become after some fluids. Once the tummy CT results showed that the liver abscess was BACK, that's when events became more serious. Docs at University wanted Dad under their care asap, and we were told that although Dad had brightened since arriving to Meritus, the reality is he is still very sick, and the situation could change quickly. At that point, they prepared Dad for a med flight to University, which was also.....supernova fast!
Mom and I are gowned and gloved and with Dad now in MICU. Texting & typing while gloved is a challenge, so I apologize for any errors. He had an uneventful night, which is fantastic. He is not running a fever at this time, and has needed no meds to keep a normal temp. That is also fantastic. He's getting broad spectrum antibiotics to start killing the bugs. The plan will be to drain that abscess again....the same procedure he had in December. He'll be in much pain after that.
Dad said the chopper ride was nice, and is a bit chatty on and off in between sleeping. He is aware that he's in ICU and gave me a glare for it. I think that has played with his head a smidge.
My parents, myself, and my siblings are greatly appreciative of the help and support from all of you. All of this is exhausting and stressful....yes....no doubt about that. However, it would be a thousand times more so without all of you who are reading this. You are reading this b/c you care about us. We feel it and we love you all so much for it. My prayer warriors are ON. I know that. I've already been witness to His glory and have felt His love over the last 24 hours.
I'll be in touch. Much, much love to all......Jen
VERY suddenly, Dad became very weak, confused, and unable to walk yesterday. He was sleeping all the time and would only stir for a moment when Mom woke him. Mom had to call the neighbor to help lift Dad, which led to a call to me and my arrival back "home" to WV. When I got there, members of our Honeywood family was all astir, twirling around to do as much as they could to help. Genetics doesn't always determine whose included in your family. We all know that. Dad was sleeping and did not awake at all for me. The felines were agitated, jumping up on Dad and chirping at me. They had quite a bit to say. Animals are extraordinary in their sense of knowing when someone is just "not right," and they were spot on. Dad was definitely "not right." It was quite evident that medical care was an immediate need.
911 was called. After the EMTs got Dad on the stretcher, Rummy (aka, the feline that owns Dad) plopped himself right up on Dad's stomach and had no intentions on moving. It was not surprising to me, but then again, it was.
I rode with Dad to Meritus in Hagerstown. Turns out one of EMTs was a student of mine just a "few" (a-hem) years ago. Meritus ER staff was really great. The RN, Bryan, was truly top notch. Once he got a 104 temp on Dad, he flew into supernova speed. ER doc got on the phone with University and the plan was to get dad transferred to Baltimore when a bed opened up. In the meantime, they would keep Dad comfortable and get him hydrated.
After the first bag of saline, Dad's vitals started to improve and he could answer questions much better. All were impressed with how much better Dad had become after some fluids. Once the tummy CT results showed that the liver abscess was BACK, that's when events became more serious. Docs at University wanted Dad under their care asap, and we were told that although Dad had brightened since arriving to Meritus, the reality is he is still very sick, and the situation could change quickly. At that point, they prepared Dad for a med flight to University, which was also.....supernova fast!
Mom and I are gowned and gloved and with Dad now in MICU. Texting & typing while gloved is a challenge, so I apologize for any errors. He had an uneventful night, which is fantastic. He is not running a fever at this time, and has needed no meds to keep a normal temp. That is also fantastic. He's getting broad spectrum antibiotics to start killing the bugs. The plan will be to drain that abscess again....the same procedure he had in December. He'll be in much pain after that.
Dad said the chopper ride was nice, and is a bit chatty on and off in between sleeping. He is aware that he's in ICU and gave me a glare for it. I think that has played with his head a smidge.
My parents, myself, and my siblings are greatly appreciative of the help and support from all of you. All of this is exhausting and stressful....yes....no doubt about that. However, it would be a thousand times more so without all of you who are reading this. You are reading this b/c you care about us. We feel it and we love you all so much for it. My prayer warriors are ON. I know that. I've already been witness to His glory and have felt His love over the last 24 hours.
I'll be in touch. Much, much love to all......Jen
Friday, January 3, 2014
Moving Forward...... 2014 is here!
I hope everyone reading this first post of 2014 enjoyed all that the spirit of Christmas has to offer....faith, family, food, fun and more family (and food)! The Rueckert house was bustling with siblings, inlaws, outlaws, and cousins from Christmas Eve through the 30th. It was nice b/c there was one overlap day when ALL of us were together at Mom and Dad's house.
Now that our house is empty again, Sam wants to know who's coming for a sleepover next. Lego building and Hot Wheels racing preferred resume activities. Any takers????
On the 23rd, Dad went back to UMMC for Intervention Radiology to take a look at the drain and determine if the abscesses had been adequately drained of the infections. Thankfully, when Mom and I met Dad back in recovery, all the drainage apparatus had been removed! This was a fairly good birthday present; Dad is a Christmas Eve baby, and turned 72 this year. Getting that "thing" removed was a nice boost to our spirits, and it felt like forward progress was in the works. ALL of us needed that!
The last couple of weeks have been "eh." Not terribly horrific, but not tremendously great either. Just, "eh." We're all just taking it one day at a time, and celebrating each success, no matter how small. For a period of time after the hospitalization, Dad's mobility consisted of a 10 inch round trip commute between the recliner and the couch. He needed assistance to travel any further, and going upstairs was not happening. At one point, my mom's walker (from her hip replacement days) was introduced. Dad was extraordinarily weak and fatigued very quickly. This was one tough infection and bouncing back has been like a golf ball in a sand trap....not so bouncy. It's taken a whole lot of "wedges" to chip this ball out! Steadily, and I mean s-t-e-a-d-i-l-y, progress is being made. Dad is finally able to make it upstairs and sleep in his own bed, enjoying the soft (or not so soft) hum of my mother's snoring. He's eating more, and able to taste Mom's cooking again (muy importante!). My inbox was added to this morning for the first time in a long time, and Dad was talking about working on his taxes. Sooo.....small steps to normalcy are attempted each day, but Dad just doesn't have the "juice" to maintain his efforts. Frustrating.
Dad has been taking Cipro and Flagyl for almost a month now in attempts to completely get this infection under control. Hopefully, once he's off these drugs, gets his full appetite back, and can eat more, he'll regain his strength and get some energy back.
What next?
January 7th is a CT scan to take a look at the liver and make sure all the abscesses are totally gone. Before any decisions related to the cancer can be made, the infections have to be eliminated completely. Please pray that the course of antibiotics erases all traces of unwanted bacteria. Forward progress, please!
January 9th is a follow up visit with the "I love pus" docs.....infectious disease. They will review the CT scan with us, and we'll find out if all is clear. Forward progress, please!
January 14th is a visit with Dr. Jiang, the oncologist. I'm not exactly sure the purpose of this visit, other than blood work and discussing a time frame for future treatments. Again, though, no cancer treatments until every bit of infection is gone.
As always, please pray for continued healing, and to rid Dad of these infections and the cancer. Pray that both my parents get back to enjoying a good quality of life. Pray for forward progress!
Thanks everyone, and much love to ALL!
Jen
Now that our house is empty again, Sam wants to know who's coming for a sleepover next. Lego building and Hot Wheels racing preferred resume activities. Any takers????
On the 23rd, Dad went back to UMMC for Intervention Radiology to take a look at the drain and determine if the abscesses had been adequately drained of the infections. Thankfully, when Mom and I met Dad back in recovery, all the drainage apparatus had been removed! This was a fairly good birthday present; Dad is a Christmas Eve baby, and turned 72 this year. Getting that "thing" removed was a nice boost to our spirits, and it felt like forward progress was in the works. ALL of us needed that!
The last couple of weeks have been "eh." Not terribly horrific, but not tremendously great either. Just, "eh." We're all just taking it one day at a time, and celebrating each success, no matter how small. For a period of time after the hospitalization, Dad's mobility consisted of a 10 inch round trip commute between the recliner and the couch. He needed assistance to travel any further, and going upstairs was not happening. At one point, my mom's walker (from her hip replacement days) was introduced. Dad was extraordinarily weak and fatigued very quickly. This was one tough infection and bouncing back has been like a golf ball in a sand trap....not so bouncy. It's taken a whole lot of "wedges" to chip this ball out! Steadily, and I mean s-t-e-a-d-i-l-y, progress is being made. Dad is finally able to make it upstairs and sleep in his own bed, enjoying the soft (or not so soft) hum of my mother's snoring. He's eating more, and able to taste Mom's cooking again (muy importante!). My inbox was added to this morning for the first time in a long time, and Dad was talking about working on his taxes. Sooo.....small steps to normalcy are attempted each day, but Dad just doesn't have the "juice" to maintain his efforts. Frustrating.
Dad has been taking Cipro and Flagyl for almost a month now in attempts to completely get this infection under control. Hopefully, once he's off these drugs, gets his full appetite back, and can eat more, he'll regain his strength and get some energy back.
What next?
January 7th is a CT scan to take a look at the liver and make sure all the abscesses are totally gone. Before any decisions related to the cancer can be made, the infections have to be eliminated completely. Please pray that the course of antibiotics erases all traces of unwanted bacteria. Forward progress, please!
January 9th is a follow up visit with the "I love pus" docs.....infectious disease. They will review the CT scan with us, and we'll find out if all is clear. Forward progress, please!
January 14th is a visit with Dr. Jiang, the oncologist. I'm not exactly sure the purpose of this visit, other than blood work and discussing a time frame for future treatments. Again, though, no cancer treatments until every bit of infection is gone.
As always, please pray for continued healing, and to rid Dad of these infections and the cancer. Pray that both my parents get back to enjoying a good quality of life. Pray for forward progress!
Thanks everyone, and much love to ALL!
Jen
Sunday, December 22, 2013
One tough infection
Tomorrow will be a week since dad was released from the hospital for this infection. It's not been an easy week...for anyone. Dad still has the drain in his side to continue to clean out the abscess. He's on 2 antibiotics to kill the nasty bugs too. Problem is, dad has no appetite. He's still very weak and has very little energy. Is this an effect of the drugs? The infection? Or dare i it say....the cancer. I'm not sure.
Mom is the best caregiver.....ever. Anything he has a taste for, she makes. She flushes the drain, changes the dressing, and stays on top of his meds. She's there.
Prayer warriors, please keep both my parents close to your hearts in prayer. Much love to all.......Jen
Wednesday, December 11, 2013
Would you like a dab of dijon mustard with that?
Um, no thank you....
Mom and I are sitting here at UMMC Baltimore, watching Dad sleep more peacefully than he was able to last night. It seems the pain is managed much better now. Thanks so much for all your prayers.
So now to explain how we got to where we are right now....
After the ERCP last Monday, Dad's health was not improving. He lost his appetite. He was extraordinarily weak and tired. He pretty much stopped eating or drinking anything. He was beginnning to need my mother to help him get around, which....yeah, well....not a good time in the Snead house. On Monday, I made contact with Dr. Darwin and Dr. Jiang. They both responded and contacted Dad at home. The plan was put into motion to get Dad to UMMC asap. The issue, though, was that the hospital was full. There was no room at the inn, and there was another winter storm on the way. It was pretty paramount that we get into Baltimore Monday night, or he wasn't going to get there. I was fairly sure that even though Dad is a Christmas Eve baby, we weren't going to be able to secure ourselves a manger on the way either. His Drs were in close communication with us and worked whatever magic they did to get dad a bed, bypass the ER, and have him admitted directly Monday evening.
A CT scan done 2am Tuesday showed that his liver is still infected with a monster, 5cm by 3cm abscess. A pyogenic liver abscess. Sounds lovely, doesn't it? No wonder he wasn't feeling better. The antibiotics that he'd been taking hadn't been able to take care of that part of his infection.
Yesterday his team of docs eventually determined the plan of action to physically drain the abscess. Because of it's location, though, this consensus was not a decision at which all could easily arrive. There was a lot of back and forth discussion as to whether or not this procedure could be done. It was a real possibility that the lung could have been punctured in the process, which, well...we won't go there. Yup, to stick a needle in his side to drain the pus out had to be timed precisely with his breathing. Dad's surgeon, Dr. Alexander, was confident it could be done. Others, however, were skeptical. (It appears, surgeons are a bit more aggressive in nature.) Sounds even lovelier, doesn't it? Evidently, these abscesses do not go away on antibiotics alone. So, if this abscess could not be drained, the septic infections would continue.
Thankfully, the abscess was able to be reached without lung involvement, and boy did it drain! The infectious disease doc we met last night so proudly announced how much he loves pus, and based upon the volume of dijon mustard looking stuff coming out of Dad's side, there might be a prize involved. I mean, seriously. N-A-S-T-Y. No WONDER he felt so icky!
So right now, Dad is resting fairly comfortably, and has slept most of the day. Percocet is doing her job beautifully, keeping his pain level reasonable. He's been able to eat a few meals and has his appetite back. Infectious disease docs are growing a garden with the pus to determine the bugs and the precise antibiotics to take care of the infection. The drain will stay in for quite a few days to make sure all of the infection is drained. Not sure of a discharge date and couldn't even begin to venture a guess.
Again, I greatly appreciate all of your thoughts and prayers. God is good. We have made it this far in this cancer b/c of the loving support of our friends and family. Thanks everyone and much love to all.....Jen
Tuesday, December 10, 2013
Morphine....check....oxycodone...check....
...and those are just appetizers that haven't even come close to satiating the pain that Dad is in right now.
I promise when not on my phone that I will fill in the details. For now, need my prayer warriors to pray for comfort and sleep for Dad. He is in excruciating pain after a procedure today.
Much love to all who are doing those little (and big things) to help my parents and me while we are here.
Monday, December 9, 2013
Just Pray.....Please.
The Reader's Digest version of the last couple of weeks, which is also available in LARGE PRINT, if needed.
Dad was released from Meritus 3 days before Thanksgiving. The infections were under control. However, the suspected root of said infections was the biliary tree, which still needed to be addressed to make sure no more infections occurred. Dad was given a 7 day script of Levaquin to make sure it completely knocked out the bacterial infections.
We had a nice family gathering on Thanksgiving Day with Dad's side of the family and all of my siblings and nephews and niece. We ate a lot, watched a lot of football, and ate some more.
Last Monday, I took Dad down to Baltimore to have his 4th ERCP done to take a look at the entire biliary tree. Dr. Darwin was able to put a stent inside the existing biliary stent. This is the 4th time Dad has had this procedure done, but for some reason, he had a tough time in recovery, and it took longer than usual to get the nausea under control and get him to a state where he could travel home.
Well, he's not improved. Since then, his appetite has decreased significantly. Food tastes weird. He's very tired and very weak. I'm at a loss as to WHY.
So please, just pray.
Saturday, November 23, 2013
"Mary, Mary, quite contrary.....
...how does your gut flora grow?
No silver bells or cockle shells, but Dad's got quite the bacterial garden growing. The cultures the infectious disease folks are growing showed a second type of bacterial infection -- enterococcus. The specific type hasn't been confirmed yet. It's still flourishing in the petri dish. Until that is confirmed, we don't know the exact antibiotic that will kill it.
We need your prayers. Dad's immune system hasn't even hit its lowest since finishing up 3 rounds of chemo, and he's trying to fight not only one, but TWO blood infections. It's like "double sepsis." Not sure if that's a real term, but it's the best way I can describe the current situation. He's fighting it, though. The fever comes and goes. He sleeps a LOT (or tries to....hospitals aren't known for good night's rest). He's eating ok. His vitals are stable now. All of those are positive, and we're going with that. Thanks, prayer warriors! Keep them coming and going. For those of you praying to clear Dad of the klebsiella sepsis, pray doubly dose to rid him of the enterococcus too. Pray that the species of enterococcus IS of the variety that can be annihilated with an antibiotic. There is a slight chance of the alternative. Think positive, be positive, and pray!
Love to all......Jen
No silver bells or cockle shells, but Dad's got quite the bacterial garden growing. The cultures the infectious disease folks are growing showed a second type of bacterial infection -- enterococcus. The specific type hasn't been confirmed yet. It's still flourishing in the petri dish. Until that is confirmed, we don't know the exact antibiotic that will kill it.
We need your prayers. Dad's immune system hasn't even hit its lowest since finishing up 3 rounds of chemo, and he's trying to fight not only one, but TWO blood infections. It's like "double sepsis." Not sure if that's a real term, but it's the best way I can describe the current situation. He's fighting it, though. The fever comes and goes. He sleeps a LOT (or tries to....hospitals aren't known for good night's rest). He's eating ok. His vitals are stable now. All of those are positive, and we're going with that. Thanks, prayer warriors! Keep them coming and going. For those of you praying to clear Dad of the klebsiella sepsis, pray doubly dose to rid him of the enterococcus too. Pray that the species of enterococcus IS of the variety that can be annihilated with an antibiotic. There is a slight chance of the alternative. Think positive, be positive, and pray!
Love to all......Jen
Friday, November 22, 2013
I sit here in Meritus Medical Center with my parents. Dad was brought to the ER last night for major fatigue, pretty intense chills, fever, and just plain, old overall ickyness. This started Wednesday night, but Dad is such a "good" patient, not wanting to bother the doctors, that he waited to see if his symptoms would just go away the next day.....because fevers, chills, and fatigue just do that???? Not to mention that he was told that if he experienced even ONE of these symptoms that he was to go directly to the hospital.
Let me catch you up a bit.....
Dad's been receiving chemo every Tuesday over the last 3 weeks. Just this past Tuesday was his last treatment of this first cycle. He starts up again Dec. 3rd. (His CA 19-9 marker had increased through October, so regardless of what that CT scan had shown after Cipro last month, the blood work showed that the cancer was on the move again.)
Dad's done very well tolerating this most recent cycle, as he has all the other ones too. He's amazingly tough. Typically, patients receiving this regiment cannot do three weeks in a row b/c their white blood cell count drops to dangerously low levels. He was able to get all three treatments in! He was warned that after the 3rd treatment, though, he would definitely have depleted white blood cells. It was extremely important that he take every precaution necessary to avoid getting sick. He was told his body would have no way to fight off anything. Mom's been the best care-taker, making sure he has his daily 3 square meals, and nightly cocktails of prune juice, Smooth Move tea, and Ensure milkshake. Quite the bartender she's become.
Haven't my parents have become the most entertaining old people? Hard to believe there was a day when they placed in a dance contest at Studebaker's! At that time, the bartender was not preparing prune juice:)
Turns out, the fever, chills, and overall YUCK are another bacterial infection. (Last October his gall bladder kicked up and caused sepsis.) Dad is septic....again. The labs showed klebsiella pneumoniae in his blood. The timing of the symptoms and the type of bacteria that it is led infectious disease to believe that his medi-port was infected during Tuesday's chemo infusion. Um....yeeeaaahh. True to Scarlett O'Hara, "I can't think about that right now. If I do, I'll go crazy. I'll think about that tomorrow." Love me some GWTW...
The nurses working with him on Tuesday were not regular faces. One was "filling in" and the other was shadowing, and I let my guard down not stalking their every move.
Fluids and IV antibiotics have been the regiment today, and it is helping, and doing so quickly. As of this moment, Dad reports feeling much better than he did when he came in last night, while still not admitting that he really needed to come to the hospital. It seems his temp is staying normal without the help of Tylenol or Motrin. He's been able to eat and sleep. All "output" is normal and functioning. Your prayers are working; he's doing pretty well considering. Not sure of a discharge day yet. Stay tuned.
Thanks, prayer warriors! Much love to all......Jen
Let me catch you up a bit.....
Dad's been receiving chemo every Tuesday over the last 3 weeks. Just this past Tuesday was his last treatment of this first cycle. He starts up again Dec. 3rd. (His CA 19-9 marker had increased through October, so regardless of what that CT scan had shown after Cipro last month, the blood work showed that the cancer was on the move again.)
Dad's done very well tolerating this most recent cycle, as he has all the other ones too. He's amazingly tough. Typically, patients receiving this regiment cannot do three weeks in a row b/c their white blood cell count drops to dangerously low levels. He was able to get all three treatments in! He was warned that after the 3rd treatment, though, he would definitely have depleted white blood cells. It was extremely important that he take every precaution necessary to avoid getting sick. He was told his body would have no way to fight off anything. Mom's been the best care-taker, making sure he has his daily 3 square meals, and nightly cocktails of prune juice, Smooth Move tea, and Ensure milkshake. Quite the bartender she's become.
Haven't my parents have become the most entertaining old people? Hard to believe there was a day when they placed in a dance contest at Studebaker's! At that time, the bartender was not preparing prune juice:)
Turns out, the fever, chills, and overall YUCK are another bacterial infection. (Last October his gall bladder kicked up and caused sepsis.) Dad is septic....again. The labs showed klebsiella pneumoniae in his blood. The timing of the symptoms and the type of bacteria that it is led infectious disease to believe that his medi-port was infected during Tuesday's chemo infusion. Um....yeeeaaahh. True to Scarlett O'Hara, "I can't think about that right now. If I do, I'll go crazy. I'll think about that tomorrow." Love me some GWTW...
The nurses working with him on Tuesday were not regular faces. One was "filling in" and the other was shadowing, and I let my guard down not stalking their every move.
Fluids and IV antibiotics have been the regiment today, and it is helping, and doing so quickly. As of this moment, Dad reports feeling much better than he did when he came in last night, while still not admitting that he really needed to come to the hospital. It seems his temp is staying normal without the help of Tylenol or Motrin. He's been able to eat and sleep. All "output" is normal and functioning. Your prayers are working; he's doing pretty well considering. Not sure of a discharge day yet. Stay tuned.
Thanks, prayer warriors! Much love to all......Jen
Monday, October 28, 2013
So much to say, so much to say, so much to say.....
....and that's not just a song by Dave Matthews. I really have so much to say, so if you are even the slightest bit attention deficit, you may want to buck up on your Adderall or Ritalin in order to follow this blog post. It's a long one.
A couple of weeks after my last posting in July, I had been doing a lot of reading on the latest technologies in stereotactic radiation. It got me thinking and wondering, so I reached out to Dad's radiation oncologist, Dr. Regine, to see if any of these treatments were an option for Dad when the time came for more treatment. In Dr. Regine's amazing fashion, I received an email response within an hour, copying a group of docs on his team. Next thing I know, Dad's being scheduled for a PET scan on August 26th and the full team is reviewing his case to see if this technology is an option to pursue.
Up to this point, Dad had never had a PET scan. Only CT scans. I hadn't fully understood what the difference was between the two, but I did know that the PET scan was much more sensitive than the CT scan. After the test and the clinic team review, Dr. Regine called me. He explained that pursuing any type of future radiation would only be necessary if there were areas to treat. According to the PET scan, there were NO areas of activity. "Not a whiff. Not a hint of activity," were his words. WOW! Can you imagine the great news that was???? Such glorious news. Yes, tumor was still there, but as far as cancer activity or growth, it was "dead." Yup, we were happier than a camel on hump day!
Now, what the PET scan did show was a stricture, almost a blockage, of the area where his duodenum is, and THAT didn't surprise me. Dad had been experiencing these "attacks" of severe pain and nausea and sometimes vomiting since April. We weren't exactly sure of the cause. Thought it was due to no gall bladder or his eating habits, or even the cancer itself. Over the summer, the attacks became more frequent and intense. This stricture could very well explain those symptoms.
Dr. Regine contacted Dr. Darwin, the GI doc who had performed the ERCP and biliary stent placements last fall. Dr. Darwin called Dad to schedule an ERCP to check it out and potentially place a stent in that area.
...but Dad was just too busy....
.... Dr. Darwin was prepared to do this procedure on September 9th (remember, they just did the PET scan on August 26th. They are moving quickly on this). Well, um, that just didn't fit into Dad's social calendar. Who knew retired, old people were so busy? (Are you kidding me???? Hello control......let me have you, says Dad.) Seems there was a trip to The Greenbrier planned beginning September 10th, with a follow up trip to Tennessee to watch my nephew (and future Olympian) at his swim meet. Both great trips, yet both trips with these attacks of pain.
So, it was pushed out until September 23rd.
(ADHD folks, still with me?)
Turns out the area was almost totally blocked. Dr. Darwin said he nearly had a hard time getting the scope into the opening. He placed a stent to open the area. While in there, he also noticed an ulcer, which is commonly caused by radiation, about 10 mm in size. Dad started meds to treat the ulcer that day and within a week, had ceased to experience any of those "attacks." He started feeling fantastic.....just in time for October's CT scan and follow up with Dr. Jiang, which brings me to.......
October 8-9, 2013:
Same routine as months past. Dad's CT was on Monday with labs and appointment with med oncologist, Dr. Jiang, on Tuesday. Dad has maintained good weight. He looks good. He feels good. He's playing golf. He's mowing the yard and river lot. He and mom have been enjoying their boat in this perfect October weather. Life is good. Looking forward to another positive report.
(Sigh)
Welllllll........it seems the 10/8 CT scan showed 2 "hypodense" spots on the liver that the radiologist believed was metastasized cancer. (-insert pulling rug out from under us here-) Say wha? So I ask, "Are these the same 2 spots that have shown up before?" Dr. Jiang was very gracious and pulled up the July scan and May scan of 2013. Nothing. But in my head, I was fairly certain spots similar in description had been observed on previous scans on the liver, and mets was suspected. I was almost certain I had read that in a report somewhere along this journey. (Hold that thought in your heads, readers.....)
Dr. Jiang proceeded to talk about the next chemo and getting started, and again, Dad's social calendar is just not lending to having time for any of this cancer crap. I'm not sure why it can't take the hint and just GO AWAY. October is not a good month for starting chemo again. There's a bonfire river party one weekend, and a wedding another weekend, and Ocean City just before Halloween. Who's got time for cancer....let alone treatment? Apparently not my father. (Ain't nobody got time for that!) Dad and Dr. Jiang negotiated on November 5th being the start up date for new chemo.
Next chemo is a combo of Gemzar and Abraxane. It will be a once a week Tuesday infusion that lasts about 3 hours, in Baltimore. Dad will get 3 Tuesdays in a row, and then get a week off. Then, another 3 Tuesdays in a row. Then done.
Well, MAYBE. Remember that thought I said to hold? Pull it back in.
The night of the appointment on 10/9 with Dr. Jiang, I was sharing the events of the day with my husband. When I told him about the liver spots, he too believed we had experienced that in a previous report. He told me to check it out.
Enter HIPPA violation of the year.....Last year, during one of Dad's office visits, his complete file had been left in the exam room with us. Let's just say, with "patient permission," I fully utilized the camera feature on my iPad. So glad I have that information.
I scrolled through the reports on my iPad, and found the CT scan from October 2012. Yup. There it was. Same description of liver lesions, and at that time, it was "very suspicious" for metastatic cancer. Yet, it had never shown up on any subsequent CT scans. So was this most recent scan of liver lesions cancer? Or was it also infection, as it had been last year? Let's dig into that, shall we?
That night, 10/9, I emailed everyone on Dad's team: Drs. Alexander, Regine, Francis, Jiang. I shared my picture of that report and asked about the possibilities. The last thing I wanted was to proceed with chemo, if it weren't necessary at this point. Let's exhaust all the possibilities.
The following day, I received a call from Dr. Jiang. She and the reading radiologist from the 10/8 CT scan reviewed everything I had shared with them. They determined that it was "possible" that the liver lesions could be due to an abscess, as had occurred before. Dr. Jiang prescribed Dad a 2-week script of Cipro to clear up any infection, to rule it out, and she scheduled him for a follow up CT on October 25th.
Dad finished up his Cipro last week, had his CT scan on Friday, and then he and Mom headed to Ocean City with friends for the weekend. I was thrilled to be able to call them on their trip to deliver some good news today. I talked with Dr. Jiang this morning. In her words, "The CT scan actually is good. The liver lesion is smaller and less defined. The radiologist read as probable abscess or a collection of bile fluid."
I think I literally floated on air through the rest of my day.....seriously. This was THE best news to me in a very long time. The lesions are no longer believed to be cancer, but an infection. Hallelujah!
There is still one more issue. The CA 19-9 level, which is the pancreatic cancer tumor marker. It had increased from July to October. However, last year dad's CA 19-9 spiked in the midst of infection then too. So, I asked if Dad could get a post-Cipro treatment lab done this week to see if the levels have decreased. Without the liver lesions, and if the CA 19-9 levels have decreased since on Cipro, there may "possibly" be NO reason to start new chemo up next Tuesday. Up to this point, Dad's social agenda hasn't lent itself to be bothered with any further medical issues anyway, so let's just go with that. Shall we?
To all our friends and family who have kept those prayers coming and going over the last 13 months, THANK YOU! Your unrelenting support has been instrumental in how well Dad has navigated this stupid cancer. Please pray that new lab work shows a DECREASE in that level. Pray that stupid cancer stays inactive and shows no ability to perk up and start to show itself again.
I am so sorry this post is this long. Honestly, though, I'm hoping it will be another few months until I have reason to compose anything new. No offense to the readers. I love you all:)
A couple of weeks after my last posting in July, I had been doing a lot of reading on the latest technologies in stereotactic radiation. It got me thinking and wondering, so I reached out to Dad's radiation oncologist, Dr. Regine, to see if any of these treatments were an option for Dad when the time came for more treatment. In Dr. Regine's amazing fashion, I received an email response within an hour, copying a group of docs on his team. Next thing I know, Dad's being scheduled for a PET scan on August 26th and the full team is reviewing his case to see if this technology is an option to pursue.
Up to this point, Dad had never had a PET scan. Only CT scans. I hadn't fully understood what the difference was between the two, but I did know that the PET scan was much more sensitive than the CT scan. After the test and the clinic team review, Dr. Regine called me. He explained that pursuing any type of future radiation would only be necessary if there were areas to treat. According to the PET scan, there were NO areas of activity. "Not a whiff. Not a hint of activity," were his words. WOW! Can you imagine the great news that was???? Such glorious news. Yes, tumor was still there, but as far as cancer activity or growth, it was "dead." Yup, we were happier than a camel on hump day!
Now, what the PET scan did show was a stricture, almost a blockage, of the area where his duodenum is, and THAT didn't surprise me. Dad had been experiencing these "attacks" of severe pain and nausea and sometimes vomiting since April. We weren't exactly sure of the cause. Thought it was due to no gall bladder or his eating habits, or even the cancer itself. Over the summer, the attacks became more frequent and intense. This stricture could very well explain those symptoms.
Dr. Regine contacted Dr. Darwin, the GI doc who had performed the ERCP and biliary stent placements last fall. Dr. Darwin called Dad to schedule an ERCP to check it out and potentially place a stent in that area.
...but Dad was just too busy....
.... Dr. Darwin was prepared to do this procedure on September 9th (remember, they just did the PET scan on August 26th. They are moving quickly on this). Well, um, that just didn't fit into Dad's social calendar. Who knew retired, old people were so busy? (Are you kidding me???? Hello control......let me have you, says Dad.) Seems there was a trip to The Greenbrier planned beginning September 10th, with a follow up trip to Tennessee to watch my nephew (and future Olympian) at his swim meet. Both great trips, yet both trips with these attacks of pain.
So, it was pushed out until September 23rd.
(ADHD folks, still with me?)
Turns out the area was almost totally blocked. Dr. Darwin said he nearly had a hard time getting the scope into the opening. He placed a stent to open the area. While in there, he also noticed an ulcer, which is commonly caused by radiation, about 10 mm in size. Dad started meds to treat the ulcer that day and within a week, had ceased to experience any of those "attacks." He started feeling fantastic.....just in time for October's CT scan and follow up with Dr. Jiang, which brings me to.......
October 8-9, 2013:
Same routine as months past. Dad's CT was on Monday with labs and appointment with med oncologist, Dr. Jiang, on Tuesday. Dad has maintained good weight. He looks good. He feels good. He's playing golf. He's mowing the yard and river lot. He and mom have been enjoying their boat in this perfect October weather. Life is good. Looking forward to another positive report.
(Sigh)
Welllllll........it seems the 10/8 CT scan showed 2 "hypodense" spots on the liver that the radiologist believed was metastasized cancer. (-insert pulling rug out from under us here-) Say wha? So I ask, "Are these the same 2 spots that have shown up before?" Dr. Jiang was very gracious and pulled up the July scan and May scan of 2013. Nothing. But in my head, I was fairly certain spots similar in description had been observed on previous scans on the liver, and mets was suspected. I was almost certain I had read that in a report somewhere along this journey. (Hold that thought in your heads, readers.....)
Dr. Jiang proceeded to talk about the next chemo and getting started, and again, Dad's social calendar is just not lending to having time for any of this cancer crap. I'm not sure why it can't take the hint and just GO AWAY. October is not a good month for starting chemo again. There's a bonfire river party one weekend, and a wedding another weekend, and Ocean City just before Halloween. Who's got time for cancer....let alone treatment? Apparently not my father. (Ain't nobody got time for that!) Dad and Dr. Jiang negotiated on November 5th being the start up date for new chemo.
Next chemo is a combo of Gemzar and Abraxane. It will be a once a week Tuesday infusion that lasts about 3 hours, in Baltimore. Dad will get 3 Tuesdays in a row, and then get a week off. Then, another 3 Tuesdays in a row. Then done.
Well, MAYBE. Remember that thought I said to hold? Pull it back in.
The night of the appointment on 10/9 with Dr. Jiang, I was sharing the events of the day with my husband. When I told him about the liver spots, he too believed we had experienced that in a previous report. He told me to check it out.
Enter HIPPA violation of the year.....Last year, during one of Dad's office visits, his complete file had been left in the exam room with us. Let's just say, with "patient permission," I fully utilized the camera feature on my iPad. So glad I have that information.
I scrolled through the reports on my iPad, and found the CT scan from October 2012. Yup. There it was. Same description of liver lesions, and at that time, it was "very suspicious" for metastatic cancer. Yet, it had never shown up on any subsequent CT scans. So was this most recent scan of liver lesions cancer? Or was it also infection, as it had been last year? Let's dig into that, shall we?
That night, 10/9, I emailed everyone on Dad's team: Drs. Alexander, Regine, Francis, Jiang. I shared my picture of that report and asked about the possibilities. The last thing I wanted was to proceed with chemo, if it weren't necessary at this point. Let's exhaust all the possibilities.
The following day, I received a call from Dr. Jiang. She and the reading radiologist from the 10/8 CT scan reviewed everything I had shared with them. They determined that it was "possible" that the liver lesions could be due to an abscess, as had occurred before. Dr. Jiang prescribed Dad a 2-week script of Cipro to clear up any infection, to rule it out, and she scheduled him for a follow up CT on October 25th.
Dad finished up his Cipro last week, had his CT scan on Friday, and then he and Mom headed to Ocean City with friends for the weekend. I was thrilled to be able to call them on their trip to deliver some good news today. I talked with Dr. Jiang this morning. In her words, "The CT scan actually is good. The liver lesion is smaller and less defined. The radiologist read as probable abscess or a collection of bile fluid."
I think I literally floated on air through the rest of my day.....seriously. This was THE best news to me in a very long time. The lesions are no longer believed to be cancer, but an infection. Hallelujah!
There is still one more issue. The CA 19-9 level, which is the pancreatic cancer tumor marker. It had increased from July to October. However, last year dad's CA 19-9 spiked in the midst of infection then too. So, I asked if Dad could get a post-Cipro treatment lab done this week to see if the levels have decreased. Without the liver lesions, and if the CA 19-9 levels have decreased since on Cipro, there may "possibly" be NO reason to start new chemo up next Tuesday. Up to this point, Dad's social agenda hasn't lent itself to be bothered with any further medical issues anyway, so let's just go with that. Shall we?
To all our friends and family who have kept those prayers coming and going over the last 13 months, THANK YOU! Your unrelenting support has been instrumental in how well Dad has navigated this stupid cancer. Please pray that new lab work shows a DECREASE in that level. Pray that stupid cancer stays inactive and shows no ability to perk up and start to show itself again.
I am so sorry this post is this long. Honestly, though, I'm hoping it will be another few months until I have reason to compose anything new. No offense to the readers. I love you all:)
Friday, July 26, 2013
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