The first thing Melanie (our youngest daughter) said when she learned of her fathers disease... we'll move in with you to help with the bills. We had talked of this possibility on and off over the years. Mel is married with two very young children. Their home was in a bad neighborhood which was getting worse right along with the Michigan economy. Her husband has a job that provides a nice living for them. The idea was that they would get out of the bad neighborhood and we would have help with our bills. We would not have to worry about losing our place to live and in the eventuality that Papa should not beat this disease, I would not have to worry about where I would go. They would sell their house as soon as they could and this one would become theirs some time in the near future.
This is all easier said than done. Jean's were the first people to live in this house. Papa's family has been here since 1959 but it is a very small house. This didn't matter so much when there were only three or four people to consider but with Mel et all, there are four adults, one of them very sick, and two little ones. Some years ago papa and I had an addition built, a family room, and there was a bedroom of sorts in the basement. We had to consolidate two families' belongings, finish the bedroom in the basement, put in another bedroom and put in an egress window. We also had to put in a gas line for the dryer in the basement as my brother in law had turned one upstairs bedroom into a laundry room years ago so he would not have to negotiate the basement steps. That room was being turned back into a bedroom for Papa. We also had to do electrical work for the new bedroom and we wanted to put in a second bathroom in the basement.
We are very fortunate: we have friends who have gone above and beyond to help us. First of all, our neighbor, an all around handyman, volunteered to build the new bedroom free of charge. We paid for the lumber, he built the room. The electricity was run by an electrician friend for cost of parts. Another friend put in the gas line for the dryer. The guy who did the bedroom put us in touch with a contractor who ended up putting in the egress window for 1/3 of what he normally charges. That saved us a lot of money. Daughter and her husband paid for some of the work, Papa and I paid for some. And a friend of our son's gave us the use of a storage facility for as long as we need it... believe me, with all our accumulated junk we need that storage unit.
Work began just after the camping trip and while it seemed to drag, it actually progressed quite rapidly. Daughter and son in law were busy packing up their house while I was trying to get rid of stuff here. I also had baby duty much of the time so Daughter could work unhindered and she and oldest daughter did the majority of my packing for me. But still, this was very difficult for me. My grand daughter was only 15 months old at the time and Lord have Mercy!! that child is a handful. She is not a baby to be put in a highchair or play pen with toys, oh no! She wants your constant attention. Add to the mix that I am getting older and I have a knee problem and she was really just getting the hang of walking and wanted to try climbing and she is very curious... that child ran me ragged and it hasn't stopped yet. A 15 month old will cure your insomnia problem!
These were very frustrating weeks. Taking care of Papa and the baby and her big brother was making a wreck out of me. Then the first week of August Papa began his treatments. He was scheduled for radiation five days a week for five weeks, with three extra treatments. He also was to have 1/2 strength chemo every Wednesday for the duration of the radiation. After he was done he would have three weeks rest and then begin chemo at full strength... once a week for three weeks, the fourth week off (that is called a cycle) for six times, or six months. Right now he has completed one cycle. Going for the treatments was a very tiring grind. We had to plan every day around them but sometimes the peace and quiet of the chemo room was the only peace and quiet we would get for a while. We are fortunate that the facility Papa gets his treatments at is only ten minutes from home. We have met people who have had to have radiation twice a day, every day and live an hour away with no place to rest between times. How hard that would be.
Soon after he got out of the hospital in June, I went and applied for Social Security Disability for him. While I dreaded this job, it actually went very smoothly and quickly. I was contacted about two days after turning in his application and had a phone interview a week later. Papa had to give his permission for them to interview me instead of him as he felt too sick to do it. He was approved immediately... I was astonished. The interviewer said that the answers to his questions were sending up all kinds of "red flags," and he felt there would be no delay at all. Sure enough we got an acceptance letter the next week that his disability payments would begin in December. That left us with five months with only my disability as income... OY! But at least we knew it would be coming and with the kids here, we would be able to make it through.
So... end of August; work on house is almost done, the storage unit is filled to the brim, the washer and dryer are moved to the basement, the egress window is in, Baby is in her new bedroom, Papa is in his new bedroom, I am in my room with my computer desk and ten huge Rubbermaid tubs filled to overflowing with sewing and quilting fabric, Brother is in his new bedroom and ready to start classes at his new school, Papa's disability is in the works, we have no more money for insurance but we did manage in there somewhere to pay for one more month, taking us to roughly the end of August. We had to forget about the second bathroom as we ran out of money. Hopefully, soon as it is sorely needed.
Our home is often chaos. Daughter and family brought their two dogs with them and we have one. They are all big. They are all barky. They all drive me insane. Baby Mae lugs out all her toys into the middle of the living room, several times a day. My refrigerator is covered with so many alphabet magnets that you can not see the color beneath and if there are more than two of us adults in the kitchen, it's like watching "Dancing With The Stars," we have to waltz to move around that tiny room. Brother Eli is often very noisy as only a seven year old can be, especially one with mild ADHD. In fact the noise level here is terrible, daughter can be raucous too, Holy Cow! I am an old third shifter and I am not used to all this noise. Add to the fracas that Papa is by now very sick, he feels like shit warmed over. The radiation treatments are taking their toll. He is very tired, some days he sleeps 22 hours and still feels fatigued. He is always nauseated and his weight is dropping at an alarming rate.
But chaotic though it may be, I love having them here. Mel and her hubby make me laugh, Baby and Brother are a joy to be around. Mae loves her grandma and I love getting up with her in the morning (I only do it sometimes, I don't want that to be a routine) and getting her breakfast. I love reading "Ruby and Max" for seventy five times in one day. I have someone to share grocery shopping with and someone who actually likes to play Scrabble once in a while, someone I can talk books with. When it gets too loud I escape to my bedroom and close the door, although sometimes I have to ignore Mae if she sees me sneaking off. She does not approve of my closed door.
Thursday, October 29, 2009
Sunday, October 25, 2009
Consequences
There are consequences to hearing a diagnoses of cancer. While many aspects of a persons life will stay the same, many will also change. For us there were two very immediate consequences: the first being financial and the second stemming from the first, the reversal of my "empty nest syndrome." Let it be said here that I never had empty nest syndrome in the first place but more about that later.
That last day that Papa came home from work was supposed to be the start of a week of vacation. In much of our country the first week of June is "Blitz" week for semi-truck drivers. The various DOT's are on the lookout for any infraction they can find. Trucks are a cash cow for many municipalities, especially when the economy is bad. They stop trucks and do safety inspections, they inspect log books, they do more random drug testing than usual. This means more waiting and down time for drivers. There is a saying in trucking that if the wheels are not rolling, they ain't making money and remember?.. Papa hates to wait. So he always saved this week for vacation and we were planning a trip to #1 son's place. Instead of vacationing, we had to go doctoring.
What happened, when we were told he had cancer, is that we lost the largest part of our income that very second. First of all, his company does not offer sick pay, not many trucking companies do. They also do not offer short term disability. We could have paid extra for short term disability but it was a substantial chunk of money that we could not afford. Papa had two weeks of vacation pay due him and one week of pay then nothing.
For much of our marriage we have lived on a precipice. Money has always been in short supply, sometimes shorter than others. We lost our home once to foreclosure, long before it was common like today. That was what drove Papa to trucking in the first place. At first he made fairly good money and I was working as a nurse too so we were fairly comfortable. I was even able to stop working for four years to take care of Papa's brother when he was sick and dying from Muscular Dystrophy. Then a few years ago I had to quit nursing because of severe arthritis in my knee, which developed because I broke my knee in that car accident in 1988. Papa had been driving for a company that shipped automotive parts and he worked 80 hours a week driving from here to Wisconsin and back. The hours were grueling for a man in his late 50's and he often got only four hours of sleep a night. Then he quit that company and took a huge cut in pay to drive for a local company. He was home more often, got better sleep, was able to enjoy life a bit more. But gradually we started to lose ground and his pay could not keep up with our economy. I receive Social Security Disability but it only managed to help keep our heads barely above water. We had no credit cards, our only loans were an auto loan, our mortgage and a home equity loan. We had a little bit in an old 401K and took that to pay off the van loan and do repairs on our van and the house and we had a few thousand left... not even six months worth of living money.
When Papa got sick he did not want me to tell his employer what was wrong with him... he was afraid of losing options that in reality were not even there. When he had his heart attack back in '07, he was off work for two months and his employer paid for his medical insurance: he was hoping that would happen again. But I knew I had to be honest with his boss. First of all, our doctor told me that Papa would never be able to work again, even if this cancer does not kill him. I knew the employer could not and would not, pay for his insurance indifinitely.
So this is where we stood in that fourth week of June, when I went to see boss man and told him: Papa has cancer, Papa had to have surgery, will have to have radiation and chemotherapy, Papa may die, we don't know yet but for sure he can not work ever again, we have basically no income, we have no money in the bank to speak of, we have a mortgage and home eq loan, we owe big time to the IRS, we will have no medical insurance unless we get help from you.
Boss guy told me that insurance was paid in full to June 17th. Well crap!!! That was a couple weeks ago already, dammit! He said that if this was a couple years ago, he would pay the premiums for us but because of the economy, he was doing his level best just to keep his trucks on the road for one more week. I knew this to be true, this is Michigan after all and we are on the fast track to oblivion here. But he did say that if I could come up with the money for the premiums, he would pay them and keep us on his company plan. I took the money out of the savings and paid him through the middle of July, so we were covered thru the surgery and post-op visits. I didn't know if this was even legal, still don't know. All I knew is that Papa would have one more month of medical insurance and I would cross any other bridges when I came to them.
Thus began my weeks of nightmare living. Oh my God, I was so scared. I would lay in bed at night and my heart would start to race and I would become short of breath. I began to have panic attacks as the questions raced through my head: Was he going to actually die? Would he be terribly sick and in what way? Would he be in a lot of pain? How was I going to take care of him? What would chemo and radiation do to him? What would happen to our home? Would we lose our place to live again? If yes, where would we go? Where could I go if he died? Could I live with one of my kids... would I want to? How was I going to pay the bills? How could I pay the IRS and the property taxes? Where would I come up with more money forthe next month of insurance and still have a bit to live on?
These questions and more like them were another reason the camping trip was a nightmare for me. I was on the edge and I was having a hard time hiding it. One minute I felt as if I would fly apart, the next I felt like a Slinky toy, an old one that had been played with roughly and was now stretched out and tied in knots as only a Slinky can be. It's hard to cook a damn hotdog over a campfire when you feel like that, and not ram the hotdog fork into your heart. It felt as if there was one there anyway, or at least ground glass.
That last day that Papa came home from work was supposed to be the start of a week of vacation. In much of our country the first week of June is "Blitz" week for semi-truck drivers. The various DOT's are on the lookout for any infraction they can find. Trucks are a cash cow for many municipalities, especially when the economy is bad. They stop trucks and do safety inspections, they inspect log books, they do more random drug testing than usual. This means more waiting and down time for drivers. There is a saying in trucking that if the wheels are not rolling, they ain't making money and remember?.. Papa hates to wait. So he always saved this week for vacation and we were planning a trip to #1 son's place. Instead of vacationing, we had to go doctoring.
What happened, when we were told he had cancer, is that we lost the largest part of our income that very second. First of all, his company does not offer sick pay, not many trucking companies do. They also do not offer short term disability. We could have paid extra for short term disability but it was a substantial chunk of money that we could not afford. Papa had two weeks of vacation pay due him and one week of pay then nothing.
For much of our marriage we have lived on a precipice. Money has always been in short supply, sometimes shorter than others. We lost our home once to foreclosure, long before it was common like today. That was what drove Papa to trucking in the first place. At first he made fairly good money and I was working as a nurse too so we were fairly comfortable. I was even able to stop working for four years to take care of Papa's brother when he was sick and dying from Muscular Dystrophy. Then a few years ago I had to quit nursing because of severe arthritis in my knee, which developed because I broke my knee in that car accident in 1988. Papa had been driving for a company that shipped automotive parts and he worked 80 hours a week driving from here to Wisconsin and back. The hours were grueling for a man in his late 50's and he often got only four hours of sleep a night. Then he quit that company and took a huge cut in pay to drive for a local company. He was home more often, got better sleep, was able to enjoy life a bit more. But gradually we started to lose ground and his pay could not keep up with our economy. I receive Social Security Disability but it only managed to help keep our heads barely above water. We had no credit cards, our only loans were an auto loan, our mortgage and a home equity loan. We had a little bit in an old 401K and took that to pay off the van loan and do repairs on our van and the house and we had a few thousand left... not even six months worth of living money.
When Papa got sick he did not want me to tell his employer what was wrong with him... he was afraid of losing options that in reality were not even there. When he had his heart attack back in '07, he was off work for two months and his employer paid for his medical insurance: he was hoping that would happen again. But I knew I had to be honest with his boss. First of all, our doctor told me that Papa would never be able to work again, even if this cancer does not kill him. I knew the employer could not and would not, pay for his insurance indifinitely.
So this is where we stood in that fourth week of June, when I went to see boss man and told him: Papa has cancer, Papa had to have surgery, will have to have radiation and chemotherapy, Papa may die, we don't know yet but for sure he can not work ever again, we have basically no income, we have no money in the bank to speak of, we have a mortgage and home eq loan, we owe big time to the IRS, we will have no medical insurance unless we get help from you.
Boss guy told me that insurance was paid in full to June 17th. Well crap!!! That was a couple weeks ago already, dammit! He said that if this was a couple years ago, he would pay the premiums for us but because of the economy, he was doing his level best just to keep his trucks on the road for one more week. I knew this to be true, this is Michigan after all and we are on the fast track to oblivion here. But he did say that if I could come up with the money for the premiums, he would pay them and keep us on his company plan. I took the money out of the savings and paid him through the middle of July, so we were covered thru the surgery and post-op visits. I didn't know if this was even legal, still don't know. All I knew is that Papa would have one more month of medical insurance and I would cross any other bridges when I came to them.
Thus began my weeks of nightmare living. Oh my God, I was so scared. I would lay in bed at night and my heart would start to race and I would become short of breath. I began to have panic attacks as the questions raced through my head: Was he going to actually die? Would he be terribly sick and in what way? Would he be in a lot of pain? How was I going to take care of him? What would chemo and radiation do to him? What would happen to our home? Would we lose our place to live again? If yes, where would we go? Where could I go if he died? Could I live with one of my kids... would I want to? How was I going to pay the bills? How could I pay the IRS and the property taxes? Where would I come up with more money forthe next month of insurance and still have a bit to live on?
These questions and more like them were another reason the camping trip was a nightmare for me. I was on the edge and I was having a hard time hiding it. One minute I felt as if I would fly apart, the next I felt like a Slinky toy, an old one that had been played with roughly and was now stretched out and tied in knots as only a Slinky can be. It's hard to cook a damn hotdog over a campfire when you feel like that, and not ram the hotdog fork into your heart. It felt as if there was one there anyway, or at least ground glass.
Sunday, October 18, 2009
The Great Outdoors
I am a camper from way back. My dad's family lived in Pittsburgh, Pa and every summer, for the first two weeks in July, my parents packed up us kids and the station wagon and we headed east to visit them. As close as I can figure we added camping to the summer routine when I was somewhere between 5 and 7 years old. Papa, on the other hand, once owned a tent when he was in his late teens... that was the extent of his camping knowledge and experience. That changed when we got married.
One reason my parents camped was because it was a way to go places and see things less expensively and with anywhere between 3 and 5 kids it was necessary to do things cheaply. Papa and I camped for the same reason but more importantly, because I loved it and soon so did he. We like having campfires at night and cooking over a fire and the smell of bacon frying and fresh coffee brewing in the morning. Pit toilets and mosquitoes... not so much but hey!.. ya gotta take some bad to get to the good.
The kids and I were the ones who always got ready for our trips and the ones who did the majority of the work while camping. For days in advance I would sort and wash and pack all the necessary items and then on the big day I would direct the packing of the camper and van while Papa slept in as long as possible. When everything was ready I would wake him up... all he had to do was hitch up the camper, get in the van and go along for the ride. Of course he would have to screw up the smoothness of my routine by having to triple check the oil and the tire pressure and oh, did I remember to pack the camping axe this time?
Our first trip post-surgery was very different. For one thing, just prior to having the surgery we had gotten the oil changed and had new tires put on the van so Papa didn't have those things to worry about. Daughter and son-in-law and oldest grand daughters helped schlepp all the gear to the camper and van and I packed. All Papa had to do was supervise son-in-law in the hitching-up of the camper, a process I find complicated with the big hitch on our current camper/van.
The first time I saw his incision I was astonished. That sucker spanned his entire abdomen (a considerable expanse) and looked like an up-side-down smiley face. It had to be a good fifteen inches long. He also had three puncture wounds, one from the feeding tube and two from the wound drains. His incision was stapled shut and his belly had a new terrain, bumpy and lumpy where it had once been bump-free... all thanks to the new configuration of the organs within. Before he left the hospital the staples were removed and steri-strips were placed over the incision, but he went home with the drains and feeding tube. It was my job to clean the wound, put a clean dressing on it at least daily, flush the feeding tube daily (the feedings were stopped when he was in the hospital. They left the tube in for a while just in case he could not eat normally and had to resume the feedings, the flushing was to keep the tube patent), empty the wound drains and measure the drainage when they got full, or daily, which ever came first. For those that may not know, wound drains like Papa's are bulb-shaped and connected to a long tube. The tube goes through a puncture wound into the surgical area; it flattens out to a tube with holes in it. You gently squeeze the bulb and it pulls blood and excess fluid out of the wound area, into the bulb of the drain, which you then empty.
Then a week or so before the trip, Papa was turning over in bed and one end of his incision split open, about two inches long. He bled all over the bed, old blackish blood from a huge hematoma that was inside on the right end of the incision. I cleaned and dressed the wound and of course, he refused to go to the doctor or the hospital to have it checked. He maintained that he was not going to let them re-stitch it anyway, or have another surgery, and his appendix incision had healed just fine and it had been a lot bigger so just deal with it wife! A couple days later we had his first post-op surgeon visit and the doctor didn't even blink an eye at the open area. He gave his blessing to the camping trip but even if he hadn't, Papa would still have insisted on going.
Soooo... surgery was June 17th, Papa came home June 25th and we went camping July 8th. We went to one of our favorite campgrounds, two hours from home so that we could get back home quickly if need be. Right from the start he felt like crap. He was weak and nauseated. He usually liked the camper bed but he couldn't get comfortable. He ate too much food inspite of the nausea. Now, my husband in times past, could put away a large amount of food but no more. I told him he had weight-loss surgery without even wanting it. That first night he was so very sick. My daughter and I could hear his stomach making noise from a good distance away. He had that sickie grey color again. He tossed and turned and moaned and groaned. I was waiting to hear him start vomiting... something he had not done at all since the surgery. There was nothing I could do for him, no medications that he had not already taken. And my one year old grand daughter cried at night, loud, piercing, make-grandma-feel terrible cries that we could hear 50 yards away, making grandpa worry and lose sleep.
The next day I told him I wanted to go home and we argued a bit but he refused. He did not say it, but I know he felt that he was near death and wanted this time with as many of our kids as we could manage to have with us and our sons and their families were on the way to the campground. So we both endured. He sometimes refused to take his medications and also would not let me look at his wound. It was bleeding a little and I think he didn't want to give me any more ammunition about going home. His old dressings looked terrible and nasty.
The rest of the weekend was better for him, thank God. We pampered him as much as possible, made him his favorite foods, made sure he ate in small amounts, made sure he got lots of naps, made sure he didn't wait too long to take pain meds. It was grueling. It was the worst camping trip I ever went on. By the time we got home I decided I wanted to sell the camper
One reason my parents camped was because it was a way to go places and see things less expensively and with anywhere between 3 and 5 kids it was necessary to do things cheaply. Papa and I camped for the same reason but more importantly, because I loved it and soon so did he. We like having campfires at night and cooking over a fire and the smell of bacon frying and fresh coffee brewing in the morning. Pit toilets and mosquitoes... not so much but hey!.. ya gotta take some bad to get to the good.
The kids and I were the ones who always got ready for our trips and the ones who did the majority of the work while camping. For days in advance I would sort and wash and pack all the necessary items and then on the big day I would direct the packing of the camper and van while Papa slept in as long as possible. When everything was ready I would wake him up... all he had to do was hitch up the camper, get in the van and go along for the ride. Of course he would have to screw up the smoothness of my routine by having to triple check the oil and the tire pressure and oh, did I remember to pack the camping axe this time?
Our first trip post-surgery was very different. For one thing, just prior to having the surgery we had gotten the oil changed and had new tires put on the van so Papa didn't have those things to worry about. Daughter and son-in-law and oldest grand daughters helped schlepp all the gear to the camper and van and I packed. All Papa had to do was supervise son-in-law in the hitching-up of the camper, a process I find complicated with the big hitch on our current camper/van.
The first time I saw his incision I was astonished. That sucker spanned his entire abdomen (a considerable expanse) and looked like an up-side-down smiley face. It had to be a good fifteen inches long. He also had three puncture wounds, one from the feeding tube and two from the wound drains. His incision was stapled shut and his belly had a new terrain, bumpy and lumpy where it had once been bump-free... all thanks to the new configuration of the organs within. Before he left the hospital the staples were removed and steri-strips were placed over the incision, but he went home with the drains and feeding tube. It was my job to clean the wound, put a clean dressing on it at least daily, flush the feeding tube daily (the feedings were stopped when he was in the hospital. They left the tube in for a while just in case he could not eat normally and had to resume the feedings, the flushing was to keep the tube patent), empty the wound drains and measure the drainage when they got full, or daily, which ever came first. For those that may not know, wound drains like Papa's are bulb-shaped and connected to a long tube. The tube goes through a puncture wound into the surgical area; it flattens out to a tube with holes in it. You gently squeeze the bulb and it pulls blood and excess fluid out of the wound area, into the bulb of the drain, which you then empty.
Then a week or so before the trip, Papa was turning over in bed and one end of his incision split open, about two inches long. He bled all over the bed, old blackish blood from a huge hematoma that was inside on the right end of the incision. I cleaned and dressed the wound and of course, he refused to go to the doctor or the hospital to have it checked. He maintained that he was not going to let them re-stitch it anyway, or have another surgery, and his appendix incision had healed just fine and it had been a lot bigger so just deal with it wife! A couple days later we had his first post-op surgeon visit and the doctor didn't even blink an eye at the open area. He gave his blessing to the camping trip but even if he hadn't, Papa would still have insisted on going.
Soooo... surgery was June 17th, Papa came home June 25th and we went camping July 8th. We went to one of our favorite campgrounds, two hours from home so that we could get back home quickly if need be. Right from the start he felt like crap. He was weak and nauseated. He usually liked the camper bed but he couldn't get comfortable. He ate too much food inspite of the nausea. Now, my husband in times past, could put away a large amount of food but no more. I told him he had weight-loss surgery without even wanting it. That first night he was so very sick. My daughter and I could hear his stomach making noise from a good distance away. He had that sickie grey color again. He tossed and turned and moaned and groaned. I was waiting to hear him start vomiting... something he had not done at all since the surgery. There was nothing I could do for him, no medications that he had not already taken. And my one year old grand daughter cried at night, loud, piercing, make-grandma-feel terrible cries that we could hear 50 yards away, making grandpa worry and lose sleep.
The next day I told him I wanted to go home and we argued a bit but he refused. He did not say it, but I know he felt that he was near death and wanted this time with as many of our kids as we could manage to have with us and our sons and their families were on the way to the campground. So we both endured. He sometimes refused to take his medications and also would not let me look at his wound. It was bleeding a little and I think he didn't want to give me any more ammunition about going home. His old dressings looked terrible and nasty.
The rest of the weekend was better for him, thank God. We pampered him as much as possible, made him his favorite foods, made sure he ate in small amounts, made sure he got lots of naps, made sure he didn't wait too long to take pain meds. It was grueling. It was the worst camping trip I ever went on. By the time we got home I decided I wanted to sell the camper
Tuesday, October 13, 2009
Humans Plan...
Papa was in ICU for six days, first of all because of the severity of his surgery (back in the 60's and 70's the mortality rate for a Whipple was 25%, today it is less than 4% when done in a major medical center) but secondly because of the meds he was on. He was not allowed to eat or drink anything for several days and he had to wait till he could take his cardiac meds orally to go to a surgical floor. It was torture to him to be unable to drink. When he feels sick he wants ice water and he was parched from the surgery, his medications, the oxygen. ICU sucks the moisture out of a person. The doctor did allow him a "few" ice chips and this was Papa's salvation.
As I mentioned before, Papa does not like to wait. It's a good thing men do not have babies because he would never have been able to wait nine months. So... the day he was out of surgery he was already asking when he could go home. Before the surgery his doctor told us to expect a minimum two week stay and that the average for a Whipple is twenty one days. This is because the surgery is so huge that there are usually complications of one kind or another, and the complications for surgery like this are usually life threatening: blood clots, peritonitis, wound infections, to name a few. He was very lucky though as there were no complications what so ever and he came home after only an eight day stay.
All he could talk about was going camping. Before surgery we had been planning to visit our son and his family in Suttons Bay, Michigan and we were unhappy that we had to forget about that. We had also had a family camping trip in the works since February, planned for July and he set that as a goal. He was going to feel well enough to go on that trip. He was determined to make that trip as he felt that it could be his last.
Every family event now is planned as though it might be his last. We have Maeva and Noelle's baptisms coming up, Thanksgiving, Christmas, birthdays to celebrate. Will he be here for them? We don't know but then, I may not be here for them either. Who know's? I could be fomenting a huge cardiac or neurological event as I type. The death of my first husband in a car accident 35 years ago taught me that nothing is sure. Have you ever seen the clever quotations that some church's put on their bulletin board's? We saw one recently that accurately describes how we feel... "Humans plan and God laughs." Every plan has a big "IF" attached to it. I always host Thanksgiving but now it's... IF papa is feeling well enough to have everyone over to our place. Papa wants to attend the baptism's in two weeks... IF he feels well enough to go to church.
In retrospect the camping trip was not a good idea.
As I mentioned before, Papa does not like to wait. It's a good thing men do not have babies because he would never have been able to wait nine months. So... the day he was out of surgery he was already asking when he could go home. Before the surgery his doctor told us to expect a minimum two week stay and that the average for a Whipple is twenty one days. This is because the surgery is so huge that there are usually complications of one kind or another, and the complications for surgery like this are usually life threatening: blood clots, peritonitis, wound infections, to name a few. He was very lucky though as there were no complications what so ever and he came home after only an eight day stay.
All he could talk about was going camping. Before surgery we had been planning to visit our son and his family in Suttons Bay, Michigan and we were unhappy that we had to forget about that. We had also had a family camping trip in the works since February, planned for July and he set that as a goal. He was going to feel well enough to go on that trip. He was determined to make that trip as he felt that it could be his last.
Every family event now is planned as though it might be his last. We have Maeva and Noelle's baptisms coming up, Thanksgiving, Christmas, birthdays to celebrate. Will he be here for them? We don't know but then, I may not be here for them either. Who know's? I could be fomenting a huge cardiac or neurological event as I type. The death of my first husband in a car accident 35 years ago taught me that nothing is sure. Have you ever seen the clever quotations that some church's put on their bulletin board's? We saw one recently that accurately describes how we feel... "Humans plan and God laughs." Every plan has a big "IF" attached to it. I always host Thanksgiving but now it's... IF papa is feeling well enough to have everyone over to our place. Papa wants to attend the baptism's in two weeks... IF he feels well enough to go to church.
In retrospect the camping trip was not a good idea.
Wednesday, October 7, 2009
Papa and pain
Like most men my husband is a big baby. When he is sick with a cold or flu he wants to be waited on hand and foot. He needs a cold cloth for his forehead, he needs his Halls and a blankie and on and on... he's a wuss. But that man can take a tremendous amount of pain.
The first time I saw this was in 1983, just after I got out of nursing school. He got very sick, nausea, vomiting, fever and chills. Then the pain started, nowhere specific, it was all over his body. I had to fight with him for days to get him to the doctor. His argument?? He had no job, I had just graduated and had no job so we had no health insurance. He said it would be better for him to die than to rack up huge medical bills and then die anyway and leave me and the kids behind with the bills. What an idiot!
This was in February. He was a horrid grey/green color and while waiting for the doctor he was ripping his clothes off, pouring with sweat but even after examination he refused to go to the hospital. He did however agree to having blood work done. Later that night, about 11:40 pm, the doctor called and said it was imperative that Papa go to ER. By this time the pain had localized to his lower right abdomen and he was in agony. We didn't live far from the hospital and were there in a few minutes. By 12:15 am they had him in surgery and removed a gangrenous appendix. It burst as they were removing it. His recovery was my first real nursing experience because I got to take care of him at home. He was discharged after three days with a huge gaping wound that was left open so it could drain.
Then there was the car accident in 1988 when his ankle was broken as the floor board was pushed up into the car. That was painful but really minor relatively speaking.
The next biggie was in 2007. As mentioned previously Papa has always been prone to a sickie stomach... heart burn, nausea, gas, that sort of thing. On
St Patrick's Day we attended a surprise birthday party our son had for his wife Sara and later that night, after eating all the party food, Papa felt really crappy. He took the usuals but it just didn't go away... for weeks! He had heart burn all the time and it started getting worse and worse. Then he started having pain in his back, right below his right shoulder blade, it sometimes radiated through to the front. Papa was a semi truck driver and he drove like that for weeks and again, he refused to go to the doctor.
Then one Tuesday night he was on his way to Iowa and got as far as Lansing (two hours from our home) but the pain became so intense that he had to turn around and come home. I wanted to take him to ER but he insisted on waiting to see our family doctor. He thought it was his gall bladder and he did not think it was a real emergency, no matter what I said. I called first thing in the morning but it was the week before Easter and she was on vacation. The office said to go to ER or he could come in and see the doctor covering for our doctor. He would do neither. So the rest of that week, five days, I had to watch that stubborn man grapple with pain. He took every available pain med he could find... vicodin, a stray Tylenol #3 left over from a dental procedure, aspirin by the handful till there was nothing left even in the lint covered bottom of my purse. The pain would come and go but when it was on him it was terrible to see.
Even now I can not believe that he would not just get in the damn van and let me take him to the hospital. Why? Why was he like that? Did he think he couldn't die? Well, maybe, but one reason, the really stupid reason, is because he didn't want to wait. Truck driver have to wait a lot. They wait in heavy traffic, they wait for their trailers to be loaded or emptied and sometimes shippers and receivers let them wait for a very long time and with no good reason... sometimes just because they can. Papa did not want to wait in ER. He was afraid he would have to sit there and sit there and WAIT!
When I finally got him in to see the doc on Monday she agreed that he could be having gall bladder attacks as his symptoms were classic for that. She was going to order the procedure we actually recently followed. Her office was setting up an ultrasound appointment and she mentioned that Papa would also have to have an EKG pre-op. I asked if the EKG could be done in her office to speed things along and she agreed. By this time Papa is grey and he is in pain and he is drenched in sweat and he is nauseated. They give him an injection for the nausea and then another for pain. Two minutes after the EKG she came rushing into the office and said papa was having a heart attack. She called the hospital and told them to expect us. I drove him rather than wait for an ambulance. It took only a few minutes to get him into the cath lab where they put in a stent. He had a 100% blockage but he was so lucky that there was no permanent damage to his heart. That entire month what he had been experiencing was angina, not heart burn or gall bladder attacks. He never did have any of the usual symptoms of a heart attack like mid-sternal chest pain or jaw pain or left arm pain... all his symptoms were on the right and in his back.
So you can see that Papa is no stranger to pain, common sense perhaps, but not to pain. But how does that physical pain compare to the mental pain of imagining all that could be ahead?
The first time I saw this was in 1983, just after I got out of nursing school. He got very sick, nausea, vomiting, fever and chills. Then the pain started, nowhere specific, it was all over his body. I had to fight with him for days to get him to the doctor. His argument?? He had no job, I had just graduated and had no job so we had no health insurance. He said it would be better for him to die than to rack up huge medical bills and then die anyway and leave me and the kids behind with the bills. What an idiot!
This was in February. He was a horrid grey/green color and while waiting for the doctor he was ripping his clothes off, pouring with sweat but even after examination he refused to go to the hospital. He did however agree to having blood work done. Later that night, about 11:40 pm, the doctor called and said it was imperative that Papa go to ER. By this time the pain had localized to his lower right abdomen and he was in agony. We didn't live far from the hospital and were there in a few minutes. By 12:15 am they had him in surgery and removed a gangrenous appendix. It burst as they were removing it. His recovery was my first real nursing experience because I got to take care of him at home. He was discharged after three days with a huge gaping wound that was left open so it could drain.
Then there was the car accident in 1988 when his ankle was broken as the floor board was pushed up into the car. That was painful but really minor relatively speaking.
The next biggie was in 2007. As mentioned previously Papa has always been prone to a sickie stomach... heart burn, nausea, gas, that sort of thing. On
St Patrick's Day we attended a surprise birthday party our son had for his wife Sara and later that night, after eating all the party food, Papa felt really crappy. He took the usuals but it just didn't go away... for weeks! He had heart burn all the time and it started getting worse and worse. Then he started having pain in his back, right below his right shoulder blade, it sometimes radiated through to the front. Papa was a semi truck driver and he drove like that for weeks and again, he refused to go to the doctor.
Then one Tuesday night he was on his way to Iowa and got as far as Lansing (two hours from our home) but the pain became so intense that he had to turn around and come home. I wanted to take him to ER but he insisted on waiting to see our family doctor. He thought it was his gall bladder and he did not think it was a real emergency, no matter what I said. I called first thing in the morning but it was the week before Easter and she was on vacation. The office said to go to ER or he could come in and see the doctor covering for our doctor. He would do neither. So the rest of that week, five days, I had to watch that stubborn man grapple with pain. He took every available pain med he could find... vicodin, a stray Tylenol #3 left over from a dental procedure, aspirin by the handful till there was nothing left even in the lint covered bottom of my purse. The pain would come and go but when it was on him it was terrible to see.
Even now I can not believe that he would not just get in the damn van and let me take him to the hospital. Why? Why was he like that? Did he think he couldn't die? Well, maybe, but one reason, the really stupid reason, is because he didn't want to wait. Truck driver have to wait a lot. They wait in heavy traffic, they wait for their trailers to be loaded or emptied and sometimes shippers and receivers let them wait for a very long time and with no good reason... sometimes just because they can. Papa did not want to wait in ER. He was afraid he would have to sit there and sit there and WAIT!
When I finally got him in to see the doc on Monday she agreed that he could be having gall bladder attacks as his symptoms were classic for that. She was going to order the procedure we actually recently followed. Her office was setting up an ultrasound appointment and she mentioned that Papa would also have to have an EKG pre-op. I asked if the EKG could be done in her office to speed things along and she agreed. By this time Papa is grey and he is in pain and he is drenched in sweat and he is nauseated. They give him an injection for the nausea and then another for pain. Two minutes after the EKG she came rushing into the office and said papa was having a heart attack. She called the hospital and told them to expect us. I drove him rather than wait for an ambulance. It took only a few minutes to get him into the cath lab where they put in a stent. He had a 100% blockage but he was so lucky that there was no permanent damage to his heart. That entire month what he had been experiencing was angina, not heart burn or gall bladder attacks. He never did have any of the usual symptoms of a heart attack like mid-sternal chest pain or jaw pain or left arm pain... all his symptoms were on the right and in his back.
So you can see that Papa is no stranger to pain, common sense perhaps, but not to pain. But how does that physical pain compare to the mental pain of imagining all that could be ahead?
Monday, October 5, 2009
first day or so
It took a long time for him to go through recovery and for them to settle him in his room. I could not believe it when I saw him... there were tubes and hoses running everywhere.
He had three IV's, an art line (goes into an artery to measure continuous blood pressure. Can also be used to draw blood for labs and blood gases), a catheter, two wound drains, a J-tube (a tube placed through the abdomen directly into the small intestine, bypassing the stomach. This gives the stomach time to heal, he got feedings through this, a substance like baby formula or Ensure), oxygen by nasal cannula, a tube down his nose into the stomach to suction out stomach contents (again to let the stomach heal and help prevent nausea and vomiting), a cardiac monitor with wires everywhere, alternating pressure boots to help prevent blood clots from inactivity and a surgical dressing that covered his entire abdomen... whew!!
He was getting several different antibiotics, meds for blood pressure, fluids, morphine through a patient controlled pain pump. After a couple days they removed an IV or two but added a PICC line and TPN, which is nutrition that goes directly into the vein, different from a regular IV though. It was like a well choreographed dance to change his position in bed and the first time he got out of bed, it took over 1/2 hour to manage all his tubes and lines.
He was one sick puppy but I have to say, his color looked so much better with the jaundice gone. He was in a lot of pain and it took some doing to get it under control. First they had to find the med that worked best for him and then we had to get him to use the pain pump routinely. People are so afraid they will become addicted to pain meds, and some times they do but the doctors are very careful about the dosage and the pain pumps, which are controlled by the patient, will not let you give yourself more than the prescribed dose. More about Papa and pain later.
I went home for a short time to change clothes and let the pooch out and then stayed the night with Papa. By this time I was exhausted and that fatigue has not left me yet. I could sleep at the drop of a hat. I was afraid to miss the doctors, they always come in first thing in the morning. I wanted to hear results and news from the horses mouth. And as drugged up as Papa was, I knew whatever he said would not be reliable.
What they had to say was that the cancer was in stage II, not III as they initially thought and this was a good thing, very good. Papa would need six weeks recuperation time and then would begin radiation and half-dose chemotherapy. After the radiation was completed, he would have a short rest period and then begin chemotherapy at the full dose. He would get chemo for about six months. We are at the point where he starts again right now.
He had three IV's, an art line (goes into an artery to measure continuous blood pressure. Can also be used to draw blood for labs and blood gases), a catheter, two wound drains, a J-tube (a tube placed through the abdomen directly into the small intestine, bypassing the stomach. This gives the stomach time to heal, he got feedings through this, a substance like baby formula or Ensure), oxygen by nasal cannula, a tube down his nose into the stomach to suction out stomach contents (again to let the stomach heal and help prevent nausea and vomiting), a cardiac monitor with wires everywhere, alternating pressure boots to help prevent blood clots from inactivity and a surgical dressing that covered his entire abdomen... whew!!
He was getting several different antibiotics, meds for blood pressure, fluids, morphine through a patient controlled pain pump. After a couple days they removed an IV or two but added a PICC line and TPN, which is nutrition that goes directly into the vein, different from a regular IV though. It was like a well choreographed dance to change his position in bed and the first time he got out of bed, it took over 1/2 hour to manage all his tubes and lines.
He was one sick puppy but I have to say, his color looked so much better with the jaundice gone. He was in a lot of pain and it took some doing to get it under control. First they had to find the med that worked best for him and then we had to get him to use the pain pump routinely. People are so afraid they will become addicted to pain meds, and some times they do but the doctors are very careful about the dosage and the pain pumps, which are controlled by the patient, will not let you give yourself more than the prescribed dose. More about Papa and pain later.
I went home for a short time to change clothes and let the pooch out and then stayed the night with Papa. By this time I was exhausted and that fatigue has not left me yet. I could sleep at the drop of a hat. I was afraid to miss the doctors, they always come in first thing in the morning. I wanted to hear results and news from the horses mouth. And as drugged up as Papa was, I knew whatever he said would not be reliable.
What they had to say was that the cancer was in stage II, not III as they initially thought and this was a good thing, very good. Papa would need six weeks recuperation time and then would begin radiation and half-dose chemotherapy. After the radiation was completed, he would have a short rest period and then begin chemotherapy at the full dose. He would get chemo for about six months. We are at the point where he starts again right now.
Friday, October 2, 2009
the big day
You have to understand here... prior to surgery day Papa had been feeling pretty good. No real pain to speak of, some mild nausea from time to time, some occasional diarrhea. But then there was the urine the color of strong tea (oh yeah, did I mention that?) and skin the color of an over ripe banana peel.
How were we feeling at this point? I guess scared would be the best answer. Papa was very stoic. There was no weeping or gnashing of teeth or rending of clothing. We knew he had to go through this. What choice did he have? None, none at all. It was have the surgery and have a chance at life, or go home and sit on the couch and wait for death.
I, on the other hand, am a basket case inside. Even though I no longer work, I am still a nurse and I know too much. I am scared for my husband. I try very hard to keep this fear to myself because I know if I lose it, he will too and that would not be good for our kids and grandkids, it would not be good for him to go into surgery like that either, or for recovery from surgery. "They" say attitude has a lot to do with recovery and "they" are correct.
We have been together for a long time now and during our marriage, every time he had an ache or a twinge Papa thought it was cancer. He always had a "nervous" stomach too. I wish I had the money now for every bottle of Mylanta or Pepto Bismol I have bought over the years. He has a strong family history of cancer, especially digestive tract cancer but we always thought if he got cancer, it would be lung cancer. He was exposed to asbestos long ago in an auto foundry and has asbestosis and he was a heavy smoker in his 20's before he quit. That heart attack in 2007 was a biggie too... I sometimes thought another of those would take him one day.
They are getting Papa ready, taking his history for the umpteenth time, going over his meds again, blood pressure, blood draws, type and cross match in case he needs a transfusion... the endless rituals of pre-surgery admissions. I can see he is getting nervous, he just wants to get it over and done with. We were still waiting for the final results of the ERCP biopsy, thinking, praying, maybe Papa would only have to have his gall bladder removed after all. The surgeon had told us earlier, "a duck is a duck" meaning if it was cancer in the preliminary biopsy, it would still be cancer when he looked at it out in the open of the operating room. Of course he was right. We had been given the choice to go to University of Michigan Hospital, or a big one in Detroit but that would have put a burden on our entire family so we put our trust in this young man and in our local hospitals. We trusted that he would not do anything unnecessary but also that he would do everything necessary.
I was told at least seven hours for the surgery. My sister, my nephew and his fiancee, my daughter and her kids and my oldest grand daughter all took turns waiting with me down in the lobby with all the other families. God, that wait is unbearable. Doctors come and go, families cry or rejoice, cell phones ring, food and coffee are brought in and left to go cold by nervous loved ones and there is nothing you can do to speed things up. I was afraid to leave and go to the bathroom, for fear that news would come while I was away. Half way through they let us know that the doctor was proceeding with the Whipple procedure and after several more hours finally the doctor made his appearance... it was pancreatic cancer, right at the head of the pancreas. The surgery was huge, they removed the gall bladder, 1/3 to 1/2 of his stomach, about 1/2 of the pancreas, part of the small intestine and he thought the cancer was stage III already, not a good sign.
How were we feeling at this point? I guess scared would be the best answer. Papa was very stoic. There was no weeping or gnashing of teeth or rending of clothing. We knew he had to go through this. What choice did he have? None, none at all. It was have the surgery and have a chance at life, or go home and sit on the couch and wait for death.
I, on the other hand, am a basket case inside. Even though I no longer work, I am still a nurse and I know too much. I am scared for my husband. I try very hard to keep this fear to myself because I know if I lose it, he will too and that would not be good for our kids and grandkids, it would not be good for him to go into surgery like that either, or for recovery from surgery. "They" say attitude has a lot to do with recovery and "they" are correct.
We have been together for a long time now and during our marriage, every time he had an ache or a twinge Papa thought it was cancer. He always had a "nervous" stomach too. I wish I had the money now for every bottle of Mylanta or Pepto Bismol I have bought over the years. He has a strong family history of cancer, especially digestive tract cancer but we always thought if he got cancer, it would be lung cancer. He was exposed to asbestos long ago in an auto foundry and has asbestosis and he was a heavy smoker in his 20's before he quit. That heart attack in 2007 was a biggie too... I sometimes thought another of those would take him one day.
They are getting Papa ready, taking his history for the umpteenth time, going over his meds again, blood pressure, blood draws, type and cross match in case he needs a transfusion... the endless rituals of pre-surgery admissions. I can see he is getting nervous, he just wants to get it over and done with. We were still waiting for the final results of the ERCP biopsy, thinking, praying, maybe Papa would only have to have his gall bladder removed after all. The surgeon had told us earlier, "a duck is a duck" meaning if it was cancer in the preliminary biopsy, it would still be cancer when he looked at it out in the open of the operating room. Of course he was right. We had been given the choice to go to University of Michigan Hospital, or a big one in Detroit but that would have put a burden on our entire family so we put our trust in this young man and in our local hospitals. We trusted that he would not do anything unnecessary but also that he would do everything necessary.
I was told at least seven hours for the surgery. My sister, my nephew and his fiancee, my daughter and her kids and my oldest grand daughter all took turns waiting with me down in the lobby with all the other families. God, that wait is unbearable. Doctors come and go, families cry or rejoice, cell phones ring, food and coffee are brought in and left to go cold by nervous loved ones and there is nothing you can do to speed things up. I was afraid to leave and go to the bathroom, for fear that news would come while I was away. Half way through they let us know that the doctor was proceeding with the Whipple procedure and after several more hours finally the doctor made his appearance... it was pancreatic cancer, right at the head of the pancreas. The surgery was huge, they removed the gall bladder, 1/3 to 1/2 of his stomach, about 1/2 of the pancreas, part of the small intestine and he thought the cancer was stage III already, not a good sign.
Thursday, October 1, 2009
it starts
It was four months ago today that everything changed. Papa came home from four days on the road and it was immediately apparant to me that he was jaundiced. No one looks the color of a canary naturally and jaundice is never good.
Just about the time of the family reunion, August 2008, he went on a diet. Now this was not unusual because he was forever trying to lose weight. For once it was working. He lifted weights and walked when he was home from the road but that became difficult because he started having sciatic pain. Still, slowly the weight came off. It really became noticable after Christmas and just about then he started having occasional diarrhea. He said it was truck stop food or because his body was getting rid of fat from him dieting. Then once or twice he said something about his stool being clay color. Hmmm... I really should have picked up on that, being a nurse and all but I missed it. He was always so tired too. He wanted to work in the woodshop on weekends but he could never manage to get out there unless Eric and/or Ben were there to encourage him.
For me the first biggest thing was the bruising. Papa is on Coumadin because of his atrial fib problem and about March he started having abnormal bruising. He would be surprised when I pointed out a new bruise and say that he had done nothing to cause it, no bumps while winding up the landing gear, no knocks to the calf or hip area. His blood work was not really that out of whack either, not for bruises the size he was sporting. We would just adjust his Coumadin however the doctor said to and have his PT checked when they said and then re-adjust again. Well, now we know he was not metabolizing the Coumadin properly because of a blockage.
When he came home jaundiced it was a Saturday. Monday I had him in to the doctor ASAP and she thought this time it might really be gall bladder problems because of the symptoms (more about this later) but I do remember her mentioning cancer somewhat as an afterthought. Her office arranged blood work and an ultrasound. The ultrasound was done the next day and did show a gall bladder full of sludge. I was relieved and worried at the same time. When I had my gall bladder out I was off work for six weeks and I was worried about finances as Papa's work did not provide short term disability or sick pay. Six weeks without a pay check is a damn long time. But it seemed the lesser of any problems that it could possibily have been.
After she got the results of the ultrasound the doctor arranged for Papa to see a gastroenterologist. He said it appeared from the ultrasound that a gall stone was blocking the common bile duct. He ordered an MRI and after that decided to do an ERCP, an endoscopy procedure where an endoscope is passed through the mouth to the stomach. He felt that he might be able to retreive the stone that way and if not, then Papa would have to have his gall bladder removed the conventional way. I remember talking with Papa and saying... at least you don't have pancreatic cancer, that is almost always a death sentence. We talked about Michael Landon, Patrick Swayze, the woman in the chat room... all dead or dying from pancreatic cancer.
The ERCP was Friday, June 12th. The doctor did not find a gall stone, he found a tumor. That is what was blocking the bile duct. He put a stent in place to hold the duct open and did a biopsy. Then he sent a surgeon to see Papa.
Of course by this time Papa is frantic to get out of the hospital but they made him stay to get surgical clearance from his cardiac docs. I practically had to chain him to the bed. He did not feel sick and he wanted to be home with his family. The surgeon told us Papa needed a Whipple procedure and it needed to be done ASAP. I remembered that from nursing school although I had never taken care of anyone who had one. I just remembered that it was said "they take everything." He drew pictures of the procedure all over the bed sheet, outlining what he planned to do. I could see Papa turning green under his already yellow tinged skin. The surgeon said that he would look by scope first and do a more in depth biopsy and would not do the Whipple unless it was necessary. Papa finally got to come home for a day or so before going back in on Wednesday the 17th.
Just about the time of the family reunion, August 2008, he went on a diet. Now this was not unusual because he was forever trying to lose weight. For once it was working. He lifted weights and walked when he was home from the road but that became difficult because he started having sciatic pain. Still, slowly the weight came off. It really became noticable after Christmas and just about then he started having occasional diarrhea. He said it was truck stop food or because his body was getting rid of fat from him dieting. Then once or twice he said something about his stool being clay color. Hmmm... I really should have picked up on that, being a nurse and all but I missed it. He was always so tired too. He wanted to work in the woodshop on weekends but he could never manage to get out there unless Eric and/or Ben were there to encourage him.
For me the first biggest thing was the bruising. Papa is on Coumadin because of his atrial fib problem and about March he started having abnormal bruising. He would be surprised when I pointed out a new bruise and say that he had done nothing to cause it, no bumps while winding up the landing gear, no knocks to the calf or hip area. His blood work was not really that out of whack either, not for bruises the size he was sporting. We would just adjust his Coumadin however the doctor said to and have his PT checked when they said and then re-adjust again. Well, now we know he was not metabolizing the Coumadin properly because of a blockage.
When he came home jaundiced it was a Saturday. Monday I had him in to the doctor ASAP and she thought this time it might really be gall bladder problems because of the symptoms (more about this later) but I do remember her mentioning cancer somewhat as an afterthought. Her office arranged blood work and an ultrasound. The ultrasound was done the next day and did show a gall bladder full of sludge. I was relieved and worried at the same time. When I had my gall bladder out I was off work for six weeks and I was worried about finances as Papa's work did not provide short term disability or sick pay. Six weeks without a pay check is a damn long time. But it seemed the lesser of any problems that it could possibily have been.
After she got the results of the ultrasound the doctor arranged for Papa to see a gastroenterologist. He said it appeared from the ultrasound that a gall stone was blocking the common bile duct. He ordered an MRI and after that decided to do an ERCP, an endoscopy procedure where an endoscope is passed through the mouth to the stomach. He felt that he might be able to retreive the stone that way and if not, then Papa would have to have his gall bladder removed the conventional way. I remember talking with Papa and saying... at least you don't have pancreatic cancer, that is almost always a death sentence. We talked about Michael Landon, Patrick Swayze, the woman in the chat room... all dead or dying from pancreatic cancer.
The ERCP was Friday, June 12th. The doctor did not find a gall stone, he found a tumor. That is what was blocking the bile duct. He put a stent in place to hold the duct open and did a biopsy. Then he sent a surgeon to see Papa.
Of course by this time Papa is frantic to get out of the hospital but they made him stay to get surgical clearance from his cardiac docs. I practically had to chain him to the bed. He did not feel sick and he wanted to be home with his family. The surgeon told us Papa needed a Whipple procedure and it needed to be done ASAP. I remembered that from nursing school although I had never taken care of anyone who had one. I just remembered that it was said "they take everything." He drew pictures of the procedure all over the bed sheet, outlining what he planned to do. I could see Papa turning green under his already yellow tinged skin. The surgeon said that he would look by scope first and do a more in depth biopsy and would not do the Whipple unless it was necessary. Papa finally got to come home for a day or so before going back in on Wednesday the 17th.
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