Good weather was a long time in coming to Michigan this year. It was rather like a pregnancy coming to full term with several episodes of false labor near the end. One day there was snow on the ground, the next tee shirt weather. Then they blared freeze/frost warnings all over the TV for days on end only to have 72 degree temps during the day. It's frustrating but at least you know something good will be there when the waiting is over. I think summer weather is finally here to stay for our all-too-short good weather season... the baby has been born!
Papa and I went for a coffee ride last week. This is our "thing"... coffee rides. I can not brew a decent cup of coffee and I do not drink it anyway, but Papa does. So every day the first thing on the agenda is to go to 7-eleven. I always drive. This started because after my first husband's death in a car accident, I had to be in control in a car. I get very nervous when other people drive, I white-knuckle and phantom brake. Then when Papa became a driver, I drove to give him a rest... he still wanted the ride and the coffee but wanted to be able to relax after being on the road. I go in and make him a cup of coffee and get a snack for him, maybe the newspaper too. Then we go for a "deer ride" in the countryside and look for deer, Canada geese, cranes, Blue Heron's and egret's, fish that come up from the river to spawn in the huge field drainage ditches. This is a routine of long standing. We have always taken anyone who wants to go with us and we raised a generation of "deer riders." We are working on generation #4 (Papa and I are generation #2 as his parents were also riders) because Lia and Mae-Mae love to ride too, in fact Mae will throw a huge fit if Papa and I leave without her. Eli, on the other hand, is a "destination rider." He does not like the deer rides unless there is a purpose to them, a destination at the end, like the zoo or Barnes and Noble or a picnic near the boat launch. He gets dragged along anyway if his mom wants to go. I just tell him the destination is eventually back home.
On this particular ride, as we came to the up-side of an over pass, I could see how beautiful the countryside had become. There were pine trees in dark green, deciduous trees in many delicate shades of green with their brand new leaves, some that looked like they were covered with a veil of pale green lace. Rays of sunlight shined through puffy clouds down on a farmer's field where neatly furrowed rows revealed the barely visible haze of new green sprouts. The week before it seems that field was still covered with corn stalk rubble and standing water from the days and days of rain. The banks of the big ditch were dressed in old, blown cattails and the green stalks of what will be beautiful tiger lily's in a few more weeks. We could see a pair of mallard ducks swimming with their choo-choo train of ducklings following behind. Mae-Mae was in the back of the van in her car seat, chattering away, happy to be with Omes and Papa. "Mae-Mae fuff Mingama," she said. Translation... I love Papa. She has always called Papa Mingama, we have no idea why or where it came from.
It was an absolutely perfect, God given, moment in time.
A day or two later, Friday the 21st, Papa had another visit to the doctor. This visit was to find out the results of the latest blood work and CT scan. You remember that he had the fluid at the base of his lung that the doctor wanted to check. Well... drum roll please... I am ecstatic to report that the doctor said they could find no sign of the cancer. The fluid is gone and his tumor marker was 28, normal. Papa's cancer is in remission.
As you can well imagine, this news took our breath away. It was not what we expected. We rode around and did some errands, we called various children to tell them the news. But most of all, we savored this news alone, together. A huge weight had been lifted from us. We discussed possibilities, we made plans. Papa had been given a reprieve.
What do we do now? Actually, the same as we have been doing. Papa will have many more tests and scans to see if the cancer returns. Knowing what we know about pancreatic cancer, it probably will but in the mean time we will enjoy. He has to go back in September or October for more blood work and extensive CT scan's. It seems like light years away.
That night we celebrated by going out to dinner with as many children as we could muster up on such short notice. We had a great time, even Papa who does not really enjoy going to restaurants. Then this past Sunday was youngest grandchild's first birthday party. This was held at the parent's house, Ben and Sara's. They had invited many of their friends, as well as family and there was a pretty big crowd there, with lots of little kids running around. It was a very hot and sunny day (finally) and Ben had wading pools filled with icy cold water sitting out for the kids, complete with squirt guns. Those kids had a blast. A few adults got pretty wet too, mostly my sons. There was much hugging as people reconnected with friends they hadn't seen for a long time, much ooooing and ahhhing as each exclaimed over the beauty of the other persons children. It was so much fun to watch, so good to be a part of. Later, Noelle puzzled about the birthday cake that was set in front of her but then she finally dug in with both hands and got her first taste of sweets. The party was a good time and good timing too. It was a great celebration of life, both for the one year old and the 61 year old.
Tuesday, May 25, 2010
Tuesday, March 23, 2010
Again With The Waiting!
I'm upset! It actually did not take too long to convince Papa that he needed the thoracentesis. When he could think about the need for a bit, and not in "the heat of the moment" so to speak, he could see the necessity. He was not happy about it at all but at least he was going to do it. So the procedure was scheduled for Wednesday the 24th, tomorrow. The hospital just phoned me and said that they were cancelling the procedure. There is not enough fluid in the pleural space to do the procedure safely at this time. They said the doctor will monitor Papa and do the procedure in the future when anything changes.
Ratz!! I want to get this done, ya know? I want to get the ball rolling if Papa needs more chemo... the sooner the better I say. On the other hand I'm glad he doesn't have to go through this and I know he will be too (he does not know at this point that the procedure is cancelled as he is still sleeping). Poor Papa... when he found out almost a year ago that he had to have that huge surgery, he was quietly all gung-ho... he wanted to get it done and get on with life. Now he is reluctant to have anything further done. He's tired of poking and proding and chemicals dripping into his body. I don't blame him, I would be tired too. He said to me the other day... that fluid is probably a new cancer caused by the chemo I've been getting. That is not unheard of you know. He may be tired of all things medical but, he is not tired of life so he will do what is necessary, reluctantly and dragging his feet like a recalcitrant child, but he will do it till he is that tired. Meanwhile the heart doctor is wanting Papa to come in for a stress test and maybe an echocardiogram and on and on... geezzzz. Will Papa do it? Stay tuned.
I suppose this could be a good thing, that there is not much fluid. The Doctor made it sound much worse but then that's his job isn't it?! I just don't know what to think now. Will this allow the cancer, if indeed that is what is causing the fluid, to spread more? Is the fluid caused by something else and if so, what? What do we do now? Waiting, waiting, waiting.
Well, spring is here and summer is on the way. The robins abound and there are huge buds on some of the trees. My day lily's are sending up shoots and the hosta's will be making an appearance any day. Ben is hosting a family weekend gathering in June and Melanie has made camping reservations at our favorite campground for in July. Papa plans on being there to enjoy all these things and more.
Ratz!! I want to get this done, ya know? I want to get the ball rolling if Papa needs more chemo... the sooner the better I say. On the other hand I'm glad he doesn't have to go through this and I know he will be too (he does not know at this point that the procedure is cancelled as he is still sleeping). Poor Papa... when he found out almost a year ago that he had to have that huge surgery, he was quietly all gung-ho... he wanted to get it done and get on with life. Now he is reluctant to have anything further done. He's tired of poking and proding and chemicals dripping into his body. I don't blame him, I would be tired too. He said to me the other day... that fluid is probably a new cancer caused by the chemo I've been getting. That is not unheard of you know. He may be tired of all things medical but, he is not tired of life so he will do what is necessary, reluctantly and dragging his feet like a recalcitrant child, but he will do it till he is that tired. Meanwhile the heart doctor is wanting Papa to come in for a stress test and maybe an echocardiogram and on and on... geezzzz. Will Papa do it? Stay tuned.
I suppose this could be a good thing, that there is not much fluid. The Doctor made it sound much worse but then that's his job isn't it?! I just don't know what to think now. Will this allow the cancer, if indeed that is what is causing the fluid, to spread more? Is the fluid caused by something else and if so, what? What do we do now? Waiting, waiting, waiting.
Well, spring is here and summer is on the way. The robins abound and there are huge buds on some of the trees. My day lily's are sending up shoots and the hosta's will be making an appearance any day. Ben is hosting a family weekend gathering in June and Melanie has made camping reservations at our favorite campground for in July. Papa plans on being there to enjoy all these things and more.
Tuesday, March 16, 2010
Now What?
Today, as you may recall, was Doctor Day. Last week, on the 9th, Papa had a CT scan to evaluate his progress or lack there of. Then Wednesday was his last chemo... all the blood work was right that time, thank goodness. Then today we saw the big man. He told us that the CT scan showed fluid in the pleural space of Papa's right lung. He asked... have you been coughing? Any shortness of breath? Do you have pain in that area? All answers were no, no coughing, no shortness of breath, no pain.
He recommended that Papa have the fluid removed so that it can be determined why he has it in the first place. He said they would look at the fluid microscopically and see if there were cancer cells in the fluid. Ut Oh!
I asked the doctor, if this could be a metastasis. He said it could be. I asked, when pancreatic cancer spreads, where does it most commonly spread to. He said liver most often, then lungs. Ut Oh! But there is no sign of anything in his liver and the tumor marker, the CA19-9 was 57, down from the last one.
Any other reason Papa might have fluid on his lung? He had a heart attack a few years ago but there was no damage. But... he also has asbestosis from working as an iron pourer many years ago. So far he has been asymptomatic with the asbestosis, but maybe it is showing up now. Of course we did not think to ask the doctor about this when we were in the office. That would have been just too easy. I fear I know his answer anyway.
The doctor wanted to schedule Papa for a thoracentesis (where they remove the fluid) right then and there but Papa said no... he wanted to wait and see if it would resolve on it's own, and if it didn't, then he would have the thoracentesis. I could see the doctor furrow his brow, he wants it ASAP, but you know Papa and hospitals. So the doctor scheduled Papa for a repeat CT scan to be done in the middle of May and he cautioned ME to call him immediately if Papa became short of breath, had an increase in coughing or pain and if his belly starts to swell up (that would be from fluid too) and of course, if he became jaundiced again.
When we got home I had to go to the storage unit to start sorting through all the junk in there and I used the opportunity away from Papa to call the doctor's office to get a bit more information. The main thing stopping Papa is that he does not want to be admitted to the hospital, he would rather die... literally. But I found that the thoracentesis would be an in and out thing, done in the X-ray lab. He would be home the same day. When I got back home I explained to him that he needs to have this done now. I told him there would be no hospital stay but that the longer he waits, the more chance for the cancer, if that is what it is, to get entrenched. When Papa is not put on the spot, when he does not have to make snap decisions, he is able to see things more clearly and he agreed to have the procedure done as soon as it can be arranged. I have to call the doctor tomorrow and let them know, it will most likely be next week cause he has to be off his coumadin for five days before the procedure.
So now we are playing the waiting game again. I am feeling very pessimistic right now. That fluid is not a good sign and I do not think it is the asbestosis causing it. I asked the doctor what he would do if it is the cancer and he said more chemo. More chemo... but to what end? Another thing he said, and this horrified me really, is while pancreatic cancer often forms nodules and tumors like Papa had before, sometimes it spreads like a mold... it is flat, he described it as almost like a film, covering and spreading, but it can not be seen on CT scans or x-rays. So it could already be wide spread and we can not see it.
What do I say to Papa? Should he fight this? Should he have chemo again? It seems so easy to sit in a lounge chair for three hours every week and let noxious chemicals drip into your body. He had no vomiting, only occasional diarrhea, some increase in nausea but he has been able to go for rides, he plays with our grand kids, he watches MMA every time it is on TV, but chemo was none the less a pain in the ass, a grind, an albatross. But I firmly believe that chemo is what has kept Papa alive, it is why he is still here, that and prayer.
I can not make up his mind for him but I know he will ask me what I think he should do. This is my nightmare... that I say the wrong thing, and I fear it will be the wrong thing, no matter what I say.
He recommended that Papa have the fluid removed so that it can be determined why he has it in the first place. He said they would look at the fluid microscopically and see if there were cancer cells in the fluid. Ut Oh!
I asked the doctor, if this could be a metastasis. He said it could be. I asked, when pancreatic cancer spreads, where does it most commonly spread to. He said liver most often, then lungs. Ut Oh! But there is no sign of anything in his liver and the tumor marker, the CA19-9 was 57, down from the last one.
Any other reason Papa might have fluid on his lung? He had a heart attack a few years ago but there was no damage. But... he also has asbestosis from working as an iron pourer many years ago. So far he has been asymptomatic with the asbestosis, but maybe it is showing up now. Of course we did not think to ask the doctor about this when we were in the office. That would have been just too easy. I fear I know his answer anyway.
The doctor wanted to schedule Papa for a thoracentesis (where they remove the fluid) right then and there but Papa said no... he wanted to wait and see if it would resolve on it's own, and if it didn't, then he would have the thoracentesis. I could see the doctor furrow his brow, he wants it ASAP, but you know Papa and hospitals. So the doctor scheduled Papa for a repeat CT scan to be done in the middle of May and he cautioned ME to call him immediately if Papa became short of breath, had an increase in coughing or pain and if his belly starts to swell up (that would be from fluid too) and of course, if he became jaundiced again.
When we got home I had to go to the storage unit to start sorting through all the junk in there and I used the opportunity away from Papa to call the doctor's office to get a bit more information. The main thing stopping Papa is that he does not want to be admitted to the hospital, he would rather die... literally. But I found that the thoracentesis would be an in and out thing, done in the X-ray lab. He would be home the same day. When I got back home I explained to him that he needs to have this done now. I told him there would be no hospital stay but that the longer he waits, the more chance for the cancer, if that is what it is, to get entrenched. When Papa is not put on the spot, when he does not have to make snap decisions, he is able to see things more clearly and he agreed to have the procedure done as soon as it can be arranged. I have to call the doctor tomorrow and let them know, it will most likely be next week cause he has to be off his coumadin for five days before the procedure.
So now we are playing the waiting game again. I am feeling very pessimistic right now. That fluid is not a good sign and I do not think it is the asbestosis causing it. I asked the doctor what he would do if it is the cancer and he said more chemo. More chemo... but to what end? Another thing he said, and this horrified me really, is while pancreatic cancer often forms nodules and tumors like Papa had before, sometimes it spreads like a mold... it is flat, he described it as almost like a film, covering and spreading, but it can not be seen on CT scans or x-rays. So it could already be wide spread and we can not see it.
What do I say to Papa? Should he fight this? Should he have chemo again? It seems so easy to sit in a lounge chair for three hours every week and let noxious chemicals drip into your body. He had no vomiting, only occasional diarrhea, some increase in nausea but he has been able to go for rides, he plays with our grand kids, he watches MMA every time it is on TV, but chemo was none the less a pain in the ass, a grind, an albatross. But I firmly believe that chemo is what has kept Papa alive, it is why he is still here, that and prayer.
I can not make up his mind for him but I know he will ask me what I think he should do. This is my nightmare... that I say the wrong thing, and I fear it will be the wrong thing, no matter what I say.
Wednesday, March 3, 2010
Chemo Day
just wanted to let everyone know that Papa's last chemo was postponed today. When they did his blood work today his red blood cells and platelets were dangerously low so they had to cancel the treatment till next Wednesday. Here we were worried about the white blood cells since he had only one Neupogen injection between his last two treatments (cause we forgot : ( He was supposed to get two Neupogen but got one instead but it turned out it was enough this time).
We were so psyched for the LAST treatment today. Papa has been feeling very tired this past week with an increase in nausea too. The fatigue is from the low red blood cells, so at least we know the why of that. Everything is a possible symptom... is he tired... the cancer is back!!! Is he nauseated... it's the cancer!! Stomach pain? It's cancer... arrrggggghhhhhhhh!!!
Next week will seem like an anti-climax.
We were so psyched for the LAST treatment today. Papa has been feeling very tired this past week with an increase in nausea too. The fatigue is from the low red blood cells, so at least we know the why of that. Everything is a possible symptom... is he tired... the cancer is back!!! Is he nauseated... it's the cancer!! Stomach pain? It's cancer... arrrggggghhhhhhhh!!!
Next week will seem like an anti-climax.
Monday, March 1, 2010
Trouble in Paradise?
For months now I have been writing about my family... mostly Papa and me but our children and other family and friends have certainly figured in. I have tried to present a picture of togetherness, support, cohesiveness. But I must confess, it is not always so.
A little more than a week ago there was a huge fight here, between Papa and live-in daughter. It was a terrible thing to behold, at least for me and Eli it was. Who was at fault? Both parties really, but also maybe no one.
Let me preface this story by stating some facts: #1, we are crammed in this house. There are six people living here, two of them very rambunctious children and then there are the three huge, space-sucking dogs who always seem to be precisely in the way and who all bark at the slightest provocation. We have a storage unit FULL of stuff that has no where to live anymore. Come spring and dry weather, Melanie and I will have the daunting task of sorting through all this stuff and deciding what to do with it. The donation centers are going to love us. Each of us has had to make sacrifices, Papa has to give up space in his beloved garage where his motorcycle is stored and all his wood working tools are located. Ryan has had to give up having his own garage entirely, half of my fabric and quilting supplies are no longer readily accessible to me, Mel has given up her "own" home. This may sound like a non-problem but to me it's big. I want them to be comfortable here. For better or worse this is now their home and it should FEEL like a home to them too. We live TOGETHER as opposed to them living WITH her mom and dad.
Ok... fact #2, Melanie and her husband have both recently stopped smoking. Papa and I are so happy about this, I can not fully express just how happy. They never smoked in the house, that was not a concern. Our concern was their health and that of their children. Ryan used Wellbutrin to help him stop smoking. Melanie tried this too but she had some really bad side effects from the drug and had to stop it, so she is having to stop cold turkey. Have you ever smoked, loved it, and quit cold turkey? I have, it's living hell. Let me say nerves are really on edge.
Fact #3, Mel and Ryan were fighting among themselves. They are very like Papa and I were at the same age... bickering all the time, picking at each other. I can usually see the instigator in an argument but Papa and I NEVER take sides. It would not be fair to either of them to do so. They need to figure their problems out by themselves. So far neither of them has tried to bring Papa or me into an argument but once in a while one of them will look to us for justification. They never get it. So, nerves were already on edge.
On fight day Papa was expecting son-in-law #2 to come over and do some work on his air compressor and his motorcycle, which are located in the garage. When SIL got here all available space in said garage was taken up by a whole lot (at least 10-12 of them) of those huge paper lawn clean-up bags, full of yard waste from when Tammy cleaned the yard in November. When she had finished the job it was past the time when they could be put at curb side and they were stuck in the garage to keep them from getting wet, awaiting spring yard waste collection. No one even remembered that they were there.
Papa, who is still so weak and debilitated from his chemo, exploded when he saw that there was nowhere for Jerry to work and that his garage was in such disarray. His garage is sacrosanct after all (insert sarcasm here) and we should have taken care of those bags. I was napping at the time this all began or his anger would have been directed at me... instead it was focused on Melanie and I got woken up by yelling.
A little more than a week ago there was a huge fight here, between Papa and live-in daughter. It was a terrible thing to behold, at least for me and Eli it was. Who was at fault? Both parties really, but also maybe no one.
Let me preface this story by stating some facts: #1, we are crammed in this house. There are six people living here, two of them very rambunctious children and then there are the three huge, space-sucking dogs who always seem to be precisely in the way and who all bark at the slightest provocation. We have a storage unit FULL of stuff that has no where to live anymore. Come spring and dry weather, Melanie and I will have the daunting task of sorting through all this stuff and deciding what to do with it. The donation centers are going to love us. Each of us has had to make sacrifices, Papa has to give up space in his beloved garage where his motorcycle is stored and all his wood working tools are located. Ryan has had to give up having his own garage entirely, half of my fabric and quilting supplies are no longer readily accessible to me, Mel has given up her "own" home. This may sound like a non-problem but to me it's big. I want them to be comfortable here. For better or worse this is now their home and it should FEEL like a home to them too. We live TOGETHER as opposed to them living WITH her mom and dad.
Ok... fact #2, Melanie and her husband have both recently stopped smoking. Papa and I are so happy about this, I can not fully express just how happy. They never smoked in the house, that was not a concern. Our concern was their health and that of their children. Ryan used Wellbutrin to help him stop smoking. Melanie tried this too but she had some really bad side effects from the drug and had to stop it, so she is having to stop cold turkey. Have you ever smoked, loved it, and quit cold turkey? I have, it's living hell. Let me say nerves are really on edge.
Fact #3, Mel and Ryan were fighting among themselves. They are very like Papa and I were at the same age... bickering all the time, picking at each other. I can usually see the instigator in an argument but Papa and I NEVER take sides. It would not be fair to either of them to do so. They need to figure their problems out by themselves. So far neither of them has tried to bring Papa or me into an argument but once in a while one of them will look to us for justification. They never get it. So, nerves were already on edge.
On fight day Papa was expecting son-in-law #2 to come over and do some work on his air compressor and his motorcycle, which are located in the garage. When SIL got here all available space in said garage was taken up by a whole lot (at least 10-12 of them) of those huge paper lawn clean-up bags, full of yard waste from when Tammy cleaned the yard in November. When she had finished the job it was past the time when they could be put at curb side and they were stuck in the garage to keep them from getting wet, awaiting spring yard waste collection. No one even remembered that they were there.
Papa, who is still so weak and debilitated from his chemo, exploded when he saw that there was nowhere for Jerry to work and that his garage was in such disarray. His garage is sacrosanct after all (insert sarcasm here) and we should have taken care of those bags. I was napping at the time this all began or his anger would have been directed at me... instead it was focused on Melanie and I got woken up by yelling.
They hurled F-bombs at each other, they swore and cussed, very loudly. Papa called her stupid.. that was the worst for her, the name calling. Papa turned red, Melanie cried. I sat still, holding Mae, and did not interfere. From experience I know that would have made matters much worse. Eli got scared and said..."Papa, why are you making my mom cry? You shouldn't do that".
Melanie packed some things for the kids, took them and left. I thought she would never come back, it had been that bad (Ryan was at work at the time of the fight. Mel went to his mom's house... she was out of town for the weekend).
All night long I fought off panic attacks. I paced the floor in my room... two steps this way, turn, two steps back. I felt sick to my stomach, my heart kept pounding and racing. I kept it to myself though. I did not want to get into an argument with Papa myself. I did some heavy duty praying that night. I prayed for our family, that this would not prove to be a fatal rift. I prayed that Papa and Melanie would be ok within themselves and with each other. I prayed that Melanie and the kids were safe. I prayed they would come back. I missed Mae and Eli so much and realized just how much I love having those babies here with me, even when they drive me crazy.
My praying must have done some good because the next day she and the kids and Ryan came back. Mel and Papa were reserved with each other at first but gradually things got better. I later spoke with her about it. I told Melanie... "you know, your dad has never really shown any anger about his cancer. This over reaction could be a sign of anger about the cancer. You need to give him some slack". She didn't totally buy that though because she remembers the past as well as I do. To Papa I said... "you need to give Melanie some slack. You know things have been really rough for her the last few weeks. And the bags in the garage are not her fault. Everyone forgot". He didn't buy it either.
It's now two weeks later and things have smoothed over. I know there will be other fights, I just hope none of them include cussing and name calling and a lower volume would be nice too. I would like to think that we could all just sit down and discuss things and work out problems that way, and I'm sure that sometimes we will. But I also think it's unrealistic to think it might not happen again the other way. The family dynamics dictate.
The fact remains however, that we all love each other and forgiveness and understanding are qualities that are important to us all. I hope my children have learned that... I lived with bitterness toward a family member for a long time... they were not even aware, I'm sure. All it did was eat me alive while they went on their merry way... till I accepted and forgave. We all know that we have thrown our lot together here, there is really no turning back anymore, financially, logically and at least for me, emotionally. And God knows... I do not want to end up on The Dr. Phil Show.
Sunday, February 14, 2010
Friends
Happy Valentine's Day everyone. I am so happy that my Valentine is still around. We might argue today... not many days go by that we don't just a little bit about some inconsequential thing, life should be normal, right?... but we will also each tell the other "I love you" and mean it, and we will sit together on the couch and watch the baby play, loving each other in the knowledge that, without us, she would not be here. I will also make the ultimate sacrifice and take Papa on a coffee ride... sacrifice because I do not like going out in the cold unless absolutely necessary but I will do it for him. Oh man, I am such a martyr : )
This coming Wednesday marks the beginning of Papa's last chemo cycle. Three more treatments, ten more Neupogen injections, two more rounds of lab work. How can all of this have passed so slowly and so quickly at the same time? There will still be CT scans and doctor visits and occasional lab work though. Papa has his next CT on March 9th... I am looking for a good result and praying the doctor will tell us the cancer is in remission.
Through out this ordeal Papa has been surrounded by many people who love him, our children and their families chief among them. Eric and Pamela call and check on him frequently and make special trips home with our grand daughters to see him when they can. Of course, Mel and Ryan and their kids live with us and Ben stops by several times a week to see his dad, it's nice that his store is so close. Ben and Sara bring Noelle over every week too. Andrea we haven't been able to see much lately... her step children were living with her and Jerry for a while because their mom was very sick and in the hospital, but Papa talks to Jerry every day on the phone. Jerry is a truck driver and works for the same company Papa used to work for. Papa helps him with directions and just generally passes the time with him. It gets lonely out on the road and Papa remembers that lonliness. Tammy and kids make their presence known too and then there are Mel and Ben's friends, my sister and brother-in-law and my internet friends who always ask how he is doing and offer up prayers for healing. How very thankful we are for everyone's prayers.
Then there is the guy Papa went to truck driving school with. They worked together on and off over the years too and ended up their careers at the same company. He helped us with our renovations before the kids moved in and continues to do little things here and there. Bob has made things so much easier for us, we are very grateful to him.
The guy across the street we don't see as much right now because of the weather. He is the one who built the room in the basement for us. We wave at each other in passing and once the weather is better, we will see a lot of him and his family as we relax on our respective front porch's. The lady across the street is the mother of Papa's best friend. She sits on her front porch in the summer too. If we don't see her every so often, I call over there to make sure she is ok. She has many children and grandchildren to check on her but I do it anyway. Just after Christmas she was in and out of the hospital a couple times but she is better now. I hear from her via e-mail too as she asks how Papa is doing. She and members of our family have been neighbors for over 50 years now.
During the length of our marriage Papa has never been a very social person. When he quit drinking he had some bad experiences with "friends" trying to get him to drink again and he cut many ties as a matter of self preservation. When we would eventually go to some gathering he never felt comfortable, especially if we were to be around smoking and drinking. Gradually the frequency of said gatherings grew more and more infrequent until the majority of them became family gatherings and sometimes he was not comfortable at them either.
Regardless of this fact, his friends from long ago have made themselves known. The wife of his best friend organized a benefit chili dinner for Papa last October. This is Michigan, a big time hunting state and most of Papa's acquaintances are hunters. Jaye got people who know him to donate the venison for the chili, the vegetables and beans and spices, cakes and dozens of cookies for desserts, garlic bread and bread sticks for dinner, the place to hold the benefit was donated, the tables and chairs, the silverware, plates and napkins, glasses. She called in all her markers and got prizes donated for raffles, 50/50 drawings, door prizes. Someone donated tickets for the drawings, someone else put donation canisters in local convenience stores. Others went door to door handing out informational flyer's and put flyer's up in stores and on telephone poles.
Jaye put a tremendous amount of work into this benefit and we can not thank her enough. She sure knows a lot of people, I can say that. And she did this for a man who, during the early stages of her marriage, caused many hard feelings between husband and wife. Those were Papa's drinking days and he would go and get Jaye's husband and take him out when husband should have been home helping with two tiny children or maybe should have been at work but wasn't cause he and Papa were busy riding around, throwing empty beer bottles at mail boxes and stop signs. Jaye probably hated Papa back in those days, probably did for a long time.
The benefit was a huge success and raised a lot of money for us during a time when pickins were slim to none. Papa did not attend. He was very sick right then from radiation treatments and in passing said to me... "no one will be there anyway, I'm nothing special." But they came... old high school friends, people from work that he barely knows, people from church that he does not know. Friends of our children were there or sent money... they all have fond memories of the tree house that Papa built so long ago, the one that had electricity and heat and lights and was insulated, where my kids stayed over many Christmas vacation's and where they lived in the summer. There were customers from Sara's bead shop, including three very chic older women who looked totally out of their element in the bar where the benefit was held. They bought a lot of pumpkin bread and cookies and raffle tickets though.
Jaye took lots of photos for Papa to enjoy and he has seen many old friends in them and some of them have subsequently phoned to see how he is. I think a lot of them are afraid to come over here... they don't know what to say to someone who may be dying. But they are friends none the less and they mean a lot to the man sitting in the corner of the couch.
Addendum: I can not forget to mention my blog readers. I am very grateful to you all for your comments... both those added here and the numerous letters I receive privately. You all understand that this is not something that only Papa is going through. It affects all of us here. I began this as a way to relieve stress and hopefully to help anyone, any reader, who may also be going through major illness with someone they love. Papa may not know you but you have all helped me. Thank you.
This coming Wednesday marks the beginning of Papa's last chemo cycle. Three more treatments, ten more Neupogen injections, two more rounds of lab work. How can all of this have passed so slowly and so quickly at the same time? There will still be CT scans and doctor visits and occasional lab work though. Papa has his next CT on March 9th... I am looking for a good result and praying the doctor will tell us the cancer is in remission.
Through out this ordeal Papa has been surrounded by many people who love him, our children and their families chief among them. Eric and Pamela call and check on him frequently and make special trips home with our grand daughters to see him when they can. Of course, Mel and Ryan and their kids live with us and Ben stops by several times a week to see his dad, it's nice that his store is so close. Ben and Sara bring Noelle over every week too. Andrea we haven't been able to see much lately... her step children were living with her and Jerry for a while because their mom was very sick and in the hospital, but Papa talks to Jerry every day on the phone. Jerry is a truck driver and works for the same company Papa used to work for. Papa helps him with directions and just generally passes the time with him. It gets lonely out on the road and Papa remembers that lonliness. Tammy and kids make their presence known too and then there are Mel and Ben's friends, my sister and brother-in-law and my internet friends who always ask how he is doing and offer up prayers for healing. How very thankful we are for everyone's prayers.
Then there is the guy Papa went to truck driving school with. They worked together on and off over the years too and ended up their careers at the same company. He helped us with our renovations before the kids moved in and continues to do little things here and there. Bob has made things so much easier for us, we are very grateful to him.
The guy across the street we don't see as much right now because of the weather. He is the one who built the room in the basement for us. We wave at each other in passing and once the weather is better, we will see a lot of him and his family as we relax on our respective front porch's. The lady across the street is the mother of Papa's best friend. She sits on her front porch in the summer too. If we don't see her every so often, I call over there to make sure she is ok. She has many children and grandchildren to check on her but I do it anyway. Just after Christmas she was in and out of the hospital a couple times but she is better now. I hear from her via e-mail too as she asks how Papa is doing. She and members of our family have been neighbors for over 50 years now.
During the length of our marriage Papa has never been a very social person. When he quit drinking he had some bad experiences with "friends" trying to get him to drink again and he cut many ties as a matter of self preservation. When we would eventually go to some gathering he never felt comfortable, especially if we were to be around smoking and drinking. Gradually the frequency of said gatherings grew more and more infrequent until the majority of them became family gatherings and sometimes he was not comfortable at them either.
Regardless of this fact, his friends from long ago have made themselves known. The wife of his best friend organized a benefit chili dinner for Papa last October. This is Michigan, a big time hunting state and most of Papa's acquaintances are hunters. Jaye got people who know him to donate the venison for the chili, the vegetables and beans and spices, cakes and dozens of cookies for desserts, garlic bread and bread sticks for dinner, the place to hold the benefit was donated, the tables and chairs, the silverware, plates and napkins, glasses. She called in all her markers and got prizes donated for raffles, 50/50 drawings, door prizes. Someone donated tickets for the drawings, someone else put donation canisters in local convenience stores. Others went door to door handing out informational flyer's and put flyer's up in stores and on telephone poles.
Jaye put a tremendous amount of work into this benefit and we can not thank her enough. She sure knows a lot of people, I can say that. And she did this for a man who, during the early stages of her marriage, caused many hard feelings between husband and wife. Those were Papa's drinking days and he would go and get Jaye's husband and take him out when husband should have been home helping with two tiny children or maybe should have been at work but wasn't cause he and Papa were busy riding around, throwing empty beer bottles at mail boxes and stop signs. Jaye probably hated Papa back in those days, probably did for a long time.
The benefit was a huge success and raised a lot of money for us during a time when pickins were slim to none. Papa did not attend. He was very sick right then from radiation treatments and in passing said to me... "no one will be there anyway, I'm nothing special." But they came... old high school friends, people from work that he barely knows, people from church that he does not know. Friends of our children were there or sent money... they all have fond memories of the tree house that Papa built so long ago, the one that had electricity and heat and lights and was insulated, where my kids stayed over many Christmas vacation's and where they lived in the summer. There were customers from Sara's bead shop, including three very chic older women who looked totally out of their element in the bar where the benefit was held. They bought a lot of pumpkin bread and cookies and raffle tickets though.
Jaye took lots of photos for Papa to enjoy and he has seen many old friends in them and some of them have subsequently phoned to see how he is. I think a lot of them are afraid to come over here... they don't know what to say to someone who may be dying. But they are friends none the less and they mean a lot to the man sitting in the corner of the couch.
Addendum: I can not forget to mention my blog readers. I am very grateful to you all for your comments... both those added here and the numerous letters I receive privately. You all understand that this is not something that only Papa is going through. It affects all of us here. I began this as a way to relieve stress and hopefully to help anyone, any reader, who may also be going through major illness with someone they love. Papa may not know you but you have all helped me. Thank you.
Wednesday, January 27, 2010
Fragile, Handle With Care
Tomorrow is Doctor Day (this was started January 26th). I for one, am eager to talk to the oncologist. I want to ask him about those lab numbers. I want to ask him about the future. Papa is entering what I call "the count down." He only has five more chemo treatments left if the doctor sticks to the original schedule. What then? How often will he have to have lab work done once chemo is through. How often will he have to have CT scans done? He should have one of those coming up pretty quick too. We are not going to know what to do with ourselves once this current routine is finished.
Already Papa is talking about camping. He is eager to go but I can't help but remember that last trip. He loves the fact that if we want, we can now stay at campgrounds for an extra day or two because there is no rush to get back home so he can go to work. Son # 2 wants us to bring the camper out to his house and stay in it there. He has a big yard, a fire pit for bon fires, he has a nice picnic area and a yard swing, we would be very comfortable. He wants his dad close at hand, he wants to build memories of us interacting with grand daughter Noelle, who is soon to be one year old. I am sure we will be taking him up on his offer and the like offer from Son #1. We find ourselves much in demand... : )
Papa is also talking about getting his motorcycle ready. Last year he was able to ride it once. The rest of the time he just did not feel well enough. I worry about him being able to hold the damn thing upright! His bike is a very big one, 1500 cc's and it's heavy and it's as long as some small cars. Right now he is very weak, from illness but also from lack of exercise. We have an exercise area in the basement... free standing weights, a treadmill, stationary bike, heavy bag and speed bags... and he mentions going down there at least once daily but he never makes it even as far as the basement steps. I hope that once chemo is over he will begin to regain his energy so he is able to do some of the activities he has always enjoyed.
I am very happy that he is speaks of these things. To me it means that HE feels he has a future. He believes he has time left to enjoy his life for a while yet. I pray he is right.
One thing I have noticed about Papa though... this ordeal has aged him, and not like fine wine or good cheese either. He looks older than his 61 years, he talks like an old man too. He worries and mutters and complains like someone far beyond his years. His body is old, it has changed so much that I hardly recognize it from a year ago. He has lost so much weight that his skin sags, especially on his upper arms. He walks with his shoulders slightly hunched over, he shuffles his feet a bit. His face is much thinner and then there is that belly with its myriad of scars and the new lumps and bumps that change position as you watch, and grow only to recede the next moment. He has a "Twilight Zone" belly or maybe "Alien."
I'm afraid of him. I'm afraid to hug him or to lean on him. I can't lay my head on his shoulder because that is where his chemo port is (upper chest by his shoulder actually). I can't fling my arm across his abdomen cause I am afraid to put pressure on his always tender stomach and all the scars. I can't even punch him on the arm when he aggravates me just because he always knows which buttons to push, I might knock him over... he knows it too, and takes advantage of the fact. I'm afraid to be intimate with him... he says it's not going to hurt him but then, he would say that wouldn't he? Yes, he would. For a long time after his surgery sex was out of the question. I suppose I should take it as a sign that he is feeling better, that he is thinking of this again.
It's strange how intimacy can change, or rather I should say, how we demonstrate intimacy can change. We have had to adapt to Papa's changing tolerances. You can not give a strong, full frontal, arms around ya, squeezing hug to someone who has abdominal pain. For months now we have had to give Papa what we call "Lia hugs." You put your hands on the person's shoulders, close the gap a little bit and lean your head in... that's it. No real contact, no real closeness. But I touch him. We sit on the couch together... it's a sectional and he has the best spot, back in the left hand corner with his legs at a full stretch down the length of one entire section. There is just enough room for me to sit at his feet. When I read I put my hand on his ankle, I rub his foot sometimes, sometimes we stretch out our hands to hold each other's for a bit. Mae-Mae flits from one of us to the other and soon the couch is littered with baby books and all her favorite toys and snackies. We are always having to shoo one or another of the dogs away so Mae can play near us... they want to be in the mix too. That corner of the couch has become the focus of the house.
January 28. Yesterday was doctor day. It was a good day. We did not have to wait to see the doctor (last time we had to wait and wait and wait... they forgot we were in the room because the nurse forgot to put the chart in the door. The doctor did not know we were in there till I went screaming out into the hallway). He said he is very happy with Papa's progress. He said he is not concerned with the CA19-9 numbers at this point but that he will continue to monitor them every few weeks. He scheduled another CT scan for in March and then he spoke of seeing Papa every few months for the next several YEARS!! It was very encouraging.
Only four chemo treatments left.
Already Papa is talking about camping. He is eager to go but I can't help but remember that last trip. He loves the fact that if we want, we can now stay at campgrounds for an extra day or two because there is no rush to get back home so he can go to work. Son # 2 wants us to bring the camper out to his house and stay in it there. He has a big yard, a fire pit for bon fires, he has a nice picnic area and a yard swing, we would be very comfortable. He wants his dad close at hand, he wants to build memories of us interacting with grand daughter Noelle, who is soon to be one year old. I am sure we will be taking him up on his offer and the like offer from Son #1. We find ourselves much in demand... : )
Papa is also talking about getting his motorcycle ready. Last year he was able to ride it once. The rest of the time he just did not feel well enough. I worry about him being able to hold the damn thing upright! His bike is a very big one, 1500 cc's and it's heavy and it's as long as some small cars. Right now he is very weak, from illness but also from lack of exercise. We have an exercise area in the basement... free standing weights, a treadmill, stationary bike, heavy bag and speed bags... and he mentions going down there at least once daily but he never makes it even as far as the basement steps. I hope that once chemo is over he will begin to regain his energy so he is able to do some of the activities he has always enjoyed.
I am very happy that he is speaks of these things. To me it means that HE feels he has a future. He believes he has time left to enjoy his life for a while yet. I pray he is right.
One thing I have noticed about Papa though... this ordeal has aged him, and not like fine wine or good cheese either. He looks older than his 61 years, he talks like an old man too. He worries and mutters and complains like someone far beyond his years. His body is old, it has changed so much that I hardly recognize it from a year ago. He has lost so much weight that his skin sags, especially on his upper arms. He walks with his shoulders slightly hunched over, he shuffles his feet a bit. His face is much thinner and then there is that belly with its myriad of scars and the new lumps and bumps that change position as you watch, and grow only to recede the next moment. He has a "Twilight Zone" belly or maybe "Alien."
I'm afraid of him. I'm afraid to hug him or to lean on him. I can't lay my head on his shoulder because that is where his chemo port is (upper chest by his shoulder actually). I can't fling my arm across his abdomen cause I am afraid to put pressure on his always tender stomach and all the scars. I can't even punch him on the arm when he aggravates me just because he always knows which buttons to push, I might knock him over... he knows it too, and takes advantage of the fact. I'm afraid to be intimate with him... he says it's not going to hurt him but then, he would say that wouldn't he? Yes, he would. For a long time after his surgery sex was out of the question. I suppose I should take it as a sign that he is feeling better, that he is thinking of this again.
It's strange how intimacy can change, or rather I should say, how we demonstrate intimacy can change. We have had to adapt to Papa's changing tolerances. You can not give a strong, full frontal, arms around ya, squeezing hug to someone who has abdominal pain. For months now we have had to give Papa what we call "Lia hugs." You put your hands on the person's shoulders, close the gap a little bit and lean your head in... that's it. No real contact, no real closeness. But I touch him. We sit on the couch together... it's a sectional and he has the best spot, back in the left hand corner with his legs at a full stretch down the length of one entire section. There is just enough room for me to sit at his feet. When I read I put my hand on his ankle, I rub his foot sometimes, sometimes we stretch out our hands to hold each other's for a bit. Mae-Mae flits from one of us to the other and soon the couch is littered with baby books and all her favorite toys and snackies. We are always having to shoo one or another of the dogs away so Mae can play near us... they want to be in the mix too. That corner of the couch has become the focus of the house.
January 28. Yesterday was doctor day. It was a good day. We did not have to wait to see the doctor (last time we had to wait and wait and wait... they forgot we were in the room because the nurse forgot to put the chart in the door. The doctor did not know we were in there till I went screaming out into the hallway). He said he is very happy with Papa's progress. He said he is not concerned with the CA19-9 numbers at this point but that he will continue to monitor them every few weeks. He scheduled another CT scan for in March and then he spoke of seeing Papa every few months for the next several YEARS!! It was very encouraging.
Only four chemo treatments left.
Friday, January 8, 2010
Labs are not just dogs
Wednesday is chemo day. Papa gets chemo every Wednesday for three weeks and the fourth week is lab work. When we arrive at chemo the first thing they do is weigh him to make sure he isn't losing too much weight. Then they take his blood pressure and temperature and then draw blood for lab work.
A glitch in any one of these can cancel or postpone a chemo treatment. I don't know how you would feel about yourself, but I want Papa to have every treatment, on the schedule originally set by the oncologist. I want to get this stuff into him as quickly as possible to ensure recovery as soon as possible.
We encountered glitches as soon as he began this three week on, one week off schedule. During the time he got chemo and radiation together there was no problem. That was because the chemo drug was at a half strength dosage. The drug Papa is given is called Gemzar. It is the first line chemo agent for pancreatic cancer and is also used for ovarian cancer, certain lung cancers and others. We were told that it is less toxic to many patients than other chemo agents but it does cause Papa severe nausea (they give him meds for this that help enormously). He has not had any hair loss but we tease him and tell him we really wouldn't know the difference anyway because he is so bald.
When they do the blood tests they are primarily looking for changes in WBC's... white blood cells, platelets and RBC's... red blood cells. A decrease in WBC's can leave a patient at risk for any infection that comes down the pike. Low platelets leave a person at risk for excessive bleeding (Papa is on Coumadin and Plavix too and that increases the risk even more) and low RBC's would leave him anemic. Before the first chemo out of three (1/3) he is ok but when it comes to 2/3 his WBC's are coming down and by 3/3 they are looking at him and taking his temp and asking "are you sure you feel ok?" We have a seven year old child living with us and a toddler... two age groups known for frequent infections, colds, flus etc. Then there is the H1N1 and this is seasonal flu season to boot. We wash hands obsessively in this house and are considering taking stock in Purell.
This pattern of increasingly low white blood cells showed it self by the second cycle of chemo. The doctor reduced the amount of the drug, hoping to head off the low WBC's for the next cycle but it did not work. Then a couple weeks before Thanksgiving they had to skip one session because they were so low and they gave him Neupogen. Neupogen is a drug to build up the WBC's... it is given as a sub q injection, just under the skin, like how insulin is given. This really helped but the next session was the same thing... low WBC's. I asked the nurse, couldn't I give him the Neupogen here at home after every session as a preventative measure? Why wait till they go low and possibly have to skip a session or reduce the Gemzar dosage again? So that is what we are doing... chemo on Wednesday, Neupogen on Friday, Saturday and Sunday then repeat 2x more... fourth week lab work.
Can you believe that Papa balks every fourth week when we have to go for the lab work? He knows it is essential to know these values but he hates going so much, more than going for chemo. I always have to insist that he go cause left up to him, he wouldn't.
Another lab test they do is for tumor markers. Certain cancers show up in your blood as high levels of this or that chemical or enzyme etc. The tumor marker for pancreatic cancer is called CA19-9. The normal level for this marker is below 37. Before he had his surgery Papa's level was 242. The doctor told us he want's the level below 28. They check this CA19-9 about every four weeks. First Papa was at 33, then 37, then it crept up to 39 and this past Wednesday it was 42. One time I asked the doctor what it meant if it went up and he said that sometimes it does go up and down but what he does not want to see is a gradual increase that does not come back down. Well hell, that's what it's doing!
When the nurse told us the level this past Wednesday Papa asked if 42 was bad. I know it's not good... does he remember what the doctor said? I don't know. The nurse told him that unless it goes up five points... like from 39 to 44, she is not concerned. She indicated that 42 was not "that" high. But it's creeping up, slowly but surely. I want to speak to the doctor but there is no way I can do that without Papa knowing. Unless something happens we do not see the oncologist again till January 27th. So from now till then I will anxiously be watching for signs of jaundice or an increase in nausea or any of the other symptoms that might indicate that chemo is not working as well as we hoped it would. Again with the waiting!!
Last night we were in the living room and had finished family devotions. After reading the devotional we go around the room and each of us in turn thanks God for His many blessings, whatever they may be, and prays about the matters that concern him. We believe there is power in prayer and power in people praying together. One thing we always pray about is healing for those we know who may be ill... Laura's mom, Laurie's mom too, the wife of the man in the chat room, the lady that goes to Sara's shop, to name a few, and of course, especially Papa. After we were done I finally got up the nerve to ask Papa point blank how he felt about all this. Is he scared? Is he worried?
His first concern was for the babies. He is worried that if he dies they will not understand, that they will think Papa abandoned them, just left them and went away with no thought or care for them. Melanie said she could imagine Maeva wandering around the house, bewildered, calling for her beloved "Ming-o-ma." Mae-Mae adores her papa and considers him to be her own personal possession. Melanie assured Papa that Mae and Eli and Noelle (Ben and Sara's baby daughter), and the bigger kids too, will know just how much he loves them. He nodded... he knew we all would do that. Then he said he's a little scared, not of death itself and beyond, but of the process of getting there, of pain and disability, of the indignities of dying, of the pain it would cause those who care about him. It's the same answer I would have given about myself.
A glitch in any one of these can cancel or postpone a chemo treatment. I don't know how you would feel about yourself, but I want Papa to have every treatment, on the schedule originally set by the oncologist. I want to get this stuff into him as quickly as possible to ensure recovery as soon as possible.
We encountered glitches as soon as he began this three week on, one week off schedule. During the time he got chemo and radiation together there was no problem. That was because the chemo drug was at a half strength dosage. The drug Papa is given is called Gemzar. It is the first line chemo agent for pancreatic cancer and is also used for ovarian cancer, certain lung cancers and others. We were told that it is less toxic to many patients than other chemo agents but it does cause Papa severe nausea (they give him meds for this that help enormously). He has not had any hair loss but we tease him and tell him we really wouldn't know the difference anyway because he is so bald.
When they do the blood tests they are primarily looking for changes in WBC's... white blood cells, platelets and RBC's... red blood cells. A decrease in WBC's can leave a patient at risk for any infection that comes down the pike. Low platelets leave a person at risk for excessive bleeding (Papa is on Coumadin and Plavix too and that increases the risk even more) and low RBC's would leave him anemic. Before the first chemo out of three (1/3) he is ok but when it comes to 2/3 his WBC's are coming down and by 3/3 they are looking at him and taking his temp and asking "are you sure you feel ok?" We have a seven year old child living with us and a toddler... two age groups known for frequent infections, colds, flus etc. Then there is the H1N1 and this is seasonal flu season to boot. We wash hands obsessively in this house and are considering taking stock in Purell.
This pattern of increasingly low white blood cells showed it self by the second cycle of chemo. The doctor reduced the amount of the drug, hoping to head off the low WBC's for the next cycle but it did not work. Then a couple weeks before Thanksgiving they had to skip one session because they were so low and they gave him Neupogen. Neupogen is a drug to build up the WBC's... it is given as a sub q injection, just under the skin, like how insulin is given. This really helped but the next session was the same thing... low WBC's. I asked the nurse, couldn't I give him the Neupogen here at home after every session as a preventative measure? Why wait till they go low and possibly have to skip a session or reduce the Gemzar dosage again? So that is what we are doing... chemo on Wednesday, Neupogen on Friday, Saturday and Sunday then repeat 2x more... fourth week lab work.
Can you believe that Papa balks every fourth week when we have to go for the lab work? He knows it is essential to know these values but he hates going so much, more than going for chemo. I always have to insist that he go cause left up to him, he wouldn't.
Another lab test they do is for tumor markers. Certain cancers show up in your blood as high levels of this or that chemical or enzyme etc. The tumor marker for pancreatic cancer is called CA19-9. The normal level for this marker is below 37. Before he had his surgery Papa's level was 242. The doctor told us he want's the level below 28. They check this CA19-9 about every four weeks. First Papa was at 33, then 37, then it crept up to 39 and this past Wednesday it was 42. One time I asked the doctor what it meant if it went up and he said that sometimes it does go up and down but what he does not want to see is a gradual increase that does not come back down. Well hell, that's what it's doing!
When the nurse told us the level this past Wednesday Papa asked if 42 was bad. I know it's not good... does he remember what the doctor said? I don't know. The nurse told him that unless it goes up five points... like from 39 to 44, she is not concerned. She indicated that 42 was not "that" high. But it's creeping up, slowly but surely. I want to speak to the doctor but there is no way I can do that without Papa knowing. Unless something happens we do not see the oncologist again till January 27th. So from now till then I will anxiously be watching for signs of jaundice or an increase in nausea or any of the other symptoms that might indicate that chemo is not working as well as we hoped it would. Again with the waiting!!
Last night we were in the living room and had finished family devotions. After reading the devotional we go around the room and each of us in turn thanks God for His many blessings, whatever they may be, and prays about the matters that concern him. We believe there is power in prayer and power in people praying together. One thing we always pray about is healing for those we know who may be ill... Laura's mom, Laurie's mom too, the wife of the man in the chat room, the lady that goes to Sara's shop, to name a few, and of course, especially Papa. After we were done I finally got up the nerve to ask Papa point blank how he felt about all this. Is he scared? Is he worried?
His first concern was for the babies. He is worried that if he dies they will not understand, that they will think Papa abandoned them, just left them and went away with no thought or care for them. Melanie said she could imagine Maeva wandering around the house, bewildered, calling for her beloved "Ming-o-ma." Mae-Mae adores her papa and considers him to be her own personal possession. Melanie assured Papa that Mae and Eli and Noelle (Ben and Sara's baby daughter), and the bigger kids too, will know just how much he loves them. He nodded... he knew we all would do that. Then he said he's a little scared, not of death itself and beyond, but of the process of getting there, of pain and disability, of the indignities of dying, of the pain it would cause those who care about him. It's the same answer I would have given about myself.
Friday, January 1, 2010
Your History Can Kick You In The Ass
Happy New Year to all. It is my fervent prayer that 2010 will be a better year for my family, for this State of Michigan, for our country, indeed, for the world.
We are staying home tonight (this entry was started on the 31st), as is our usual custom. Papa and I have never been "party" people. By this I mean we do not go to parties where the intention is to see just how much one can drink and still be able to walk... or not! We (Papa and I) do not frequent bars either, actually he and I do not drink alcohol at all. This is because he is a recovered alcoholic. He was never diagnosed by a professional as being an alcoholic but he believes himself to be one. He comes from a long line of alcoholics and has perpetuated the family tradition in at least one of our children. Papa and I went to high school together where I knew him only casually. We met up again one day, several months after my first husband was killed in a car accident. I was taking my four year old son ice skating and Papa skated up to me to say hello and remind me who he was. He was at the rink alone, celebrating the one year mark of his sobriety and the cessation of his smoking. He was alone for this very special occasion because all of his friends were drinkers and could not function without a beer and cigarette within reach. Neither I, nor any of my family ever knew him as a smoker or drinker and none of our children ever has either.
Papa hates the fact that he ever was a drinker. Even to this day, 37 years after stopping drinking and smoking, old friends occasionally remind him of something hilarious he did while drunk, that he can not remember. He hates that he was a fool, he regrets the things he did, like smash into strangers cars just for the fun of it, or scaring the hell out of his friends when driving like a maniac, or standing on the seat, hands in the air, on a moving motorcycle. He tells me of times that he spent weeks drunk, where he would get drunk before he went to work then spend several hours after work at a bar drinking, then go home and drink more till he passed out then get up and go to work and start the cycle over again... and again... and again. Papa was an auto worker at the time and this was a common practice among many of the auto workers. He says now you know why cars fall apart... drunks built them. Scary thought!
Some of the stories are very funny and I can not help but laugh at them, but part of the laughter is in wonder that Papa ever acted like that... that is not the man that I know.
Smoking was the same for him. He says that, for him at least, smoking and drinking go together. That is why he had to quit them both at the same time. You might think this would be a very difficult thing to do but he did it cold turkey. Papa does not take credit for this himself... he says "God took it out of me," and considers this his own personal miracle.
I was a smoker too, I loved smoking so much. Then I had this beautiful baby girl who has learning disabilities. Learning everything was so hard for her. She always tested within normal limits but she spent her entire school life in special ed. Thank you God for those teachers who helped my girl. Andi is a grown woman now, married to a wonderful man and step mom to six great kids who we are proud to consider our own. People tell me I should not blame myself for Andi's problems but I know they were caused by my smoking. When we got together Papa nagged me and nagged me to stop smoking. It was almost a deal breaker. I tried to quit many times. I can not even guess at how many packs of cigarettes I bought, smoked one in the car with the windows rolled down to get rid of the smoke, and then threw the rest of the pack away, out the car window, so I wouldn't get caught smoking yet again. Then Papa and I decided we wanted another baby and thinking of Andi finally gave me the right incentive to quit.
Both Papa and I have seen the devestation these habits can cause, close up and personal. My father, a long time smoker, but not a drinker, died at 53 from cardiac arrest... smoking certainly a major contributing factor. My mom, also a non-drinker, was a heavy smoker. She had a beautiful singing voice that she ruined with smoking. She had a chronic cough and chronic bronchitis. I could pick her out of a crowd by following her cough... ask me and I will tell you that story. She died just short of her 63rd birthday from pneumonia and complications of diabetes. My mom died the week of our oldest son's wedding. That was an incredibly difficult time for me, for the entire family. It is not easy to mourn and celebrate at the same time. It makes you feel guilty to be happy. I miss my mom very much and I sure do wish I had her around to help me get through all this mess with Papa.
Papa's mother, 62, a smoker and drinker, died from liver and kidney failure and his dad, 68, a drinker who quit smoking, died from esophageal varicies (varicose veins in the esophagus), a particularily nasty way to die and a common finding in long time drinkers. His extended family was well known in this area for their drinking habits. One of our children has a life ruined by drinking and she is doing her best to ruin her children's lives too.
She was not raised by Papa and me but our other four children were. My two oldest knew me as a smoker but the two youngest did not and as I said before, none of his children ever knew Papa as a smoker or drinker. All our time together we have cautioned our children against smoking and drinking but it did no good. I can not understand this at all. Did they start because of peer pressure? Was it just in rebellion against parental authority? They all are at such high risk for problems caused by these things, and they CHOOSE to do it. Papa and I do not believe that alcoholism is a disease. It is something that is chosen because people make a conscious decision to take that next drink. No one chooses polio, no one chooses multiple sclerosis, no one chooses leukemia. But they do choose the distinct possibility of liver failure, just to name one consequence, by drinking. Same goes for smoking. My daughter and her husband that live with us are both smokers. They think if they go outside to smoke that it will not affect their kids or those around them, but they reek of smoke when they enter the house. It may not affect their kids health, but it will affect them when mama dies young cause she has to light up yet another cigarette.
I know I have ranted and raved here but these things are important. Why? Because the only reasons the doctors have given that Papa has pancreatic cancer is because he once smoked and drank to excess.
At 4pm on New Year's Eve Papa looked at me and said, "it looks like I'm going to make it to 2010 after all."
We are staying home tonight (this entry was started on the 31st), as is our usual custom. Papa and I have never been "party" people. By this I mean we do not go to parties where the intention is to see just how much one can drink and still be able to walk... or not! We (Papa and I) do not frequent bars either, actually he and I do not drink alcohol at all. This is because he is a recovered alcoholic. He was never diagnosed by a professional as being an alcoholic but he believes himself to be one. He comes from a long line of alcoholics and has perpetuated the family tradition in at least one of our children. Papa and I went to high school together where I knew him only casually. We met up again one day, several months after my first husband was killed in a car accident. I was taking my four year old son ice skating and Papa skated up to me to say hello and remind me who he was. He was at the rink alone, celebrating the one year mark of his sobriety and the cessation of his smoking. He was alone for this very special occasion because all of his friends were drinkers and could not function without a beer and cigarette within reach. Neither I, nor any of my family ever knew him as a smoker or drinker and none of our children ever has either.
Papa hates the fact that he ever was a drinker. Even to this day, 37 years after stopping drinking and smoking, old friends occasionally remind him of something hilarious he did while drunk, that he can not remember. He hates that he was a fool, he regrets the things he did, like smash into strangers cars just for the fun of it, or scaring the hell out of his friends when driving like a maniac, or standing on the seat, hands in the air, on a moving motorcycle. He tells me of times that he spent weeks drunk, where he would get drunk before he went to work then spend several hours after work at a bar drinking, then go home and drink more till he passed out then get up and go to work and start the cycle over again... and again... and again. Papa was an auto worker at the time and this was a common practice among many of the auto workers. He says now you know why cars fall apart... drunks built them. Scary thought!
Some of the stories are very funny and I can not help but laugh at them, but part of the laughter is in wonder that Papa ever acted like that... that is not the man that I know.
Smoking was the same for him. He says that, for him at least, smoking and drinking go together. That is why he had to quit them both at the same time. You might think this would be a very difficult thing to do but he did it cold turkey. Papa does not take credit for this himself... he says "God took it out of me," and considers this his own personal miracle.
I was a smoker too, I loved smoking so much. Then I had this beautiful baby girl who has learning disabilities. Learning everything was so hard for her. She always tested within normal limits but she spent her entire school life in special ed. Thank you God for those teachers who helped my girl. Andi is a grown woman now, married to a wonderful man and step mom to six great kids who we are proud to consider our own. People tell me I should not blame myself for Andi's problems but I know they were caused by my smoking. When we got together Papa nagged me and nagged me to stop smoking. It was almost a deal breaker. I tried to quit many times. I can not even guess at how many packs of cigarettes I bought, smoked one in the car with the windows rolled down to get rid of the smoke, and then threw the rest of the pack away, out the car window, so I wouldn't get caught smoking yet again. Then Papa and I decided we wanted another baby and thinking of Andi finally gave me the right incentive to quit.
Both Papa and I have seen the devestation these habits can cause, close up and personal. My father, a long time smoker, but not a drinker, died at 53 from cardiac arrest... smoking certainly a major contributing factor. My mom, also a non-drinker, was a heavy smoker. She had a beautiful singing voice that she ruined with smoking. She had a chronic cough and chronic bronchitis. I could pick her out of a crowd by following her cough... ask me and I will tell you that story. She died just short of her 63rd birthday from pneumonia and complications of diabetes. My mom died the week of our oldest son's wedding. That was an incredibly difficult time for me, for the entire family. It is not easy to mourn and celebrate at the same time. It makes you feel guilty to be happy. I miss my mom very much and I sure do wish I had her around to help me get through all this mess with Papa.
Papa's mother, 62, a smoker and drinker, died from liver and kidney failure and his dad, 68, a drinker who quit smoking, died from esophageal varicies (varicose veins in the esophagus), a particularily nasty way to die and a common finding in long time drinkers. His extended family was well known in this area for their drinking habits. One of our children has a life ruined by drinking and she is doing her best to ruin her children's lives too.
She was not raised by Papa and me but our other four children were. My two oldest knew me as a smoker but the two youngest did not and as I said before, none of his children ever knew Papa as a smoker or drinker. All our time together we have cautioned our children against smoking and drinking but it did no good. I can not understand this at all. Did they start because of peer pressure? Was it just in rebellion against parental authority? They all are at such high risk for problems caused by these things, and they CHOOSE to do it. Papa and I do not believe that alcoholism is a disease. It is something that is chosen because people make a conscious decision to take that next drink. No one chooses polio, no one chooses multiple sclerosis, no one chooses leukemia. But they do choose the distinct possibility of liver failure, just to name one consequence, by drinking. Same goes for smoking. My daughter and her husband that live with us are both smokers. They think if they go outside to smoke that it will not affect their kids or those around them, but they reek of smoke when they enter the house. It may not affect their kids health, but it will affect them when mama dies young cause she has to light up yet another cigarette.
I know I have ranted and raved here but these things are important. Why? Because the only reasons the doctors have given that Papa has pancreatic cancer is because he once smoked and drank to excess.
At 4pm on New Year's Eve Papa looked at me and said, "it looks like I'm going to make it to 2010 after all."
Wednesday, December 16, 2009
Poems and Prayers and Promises
In 1969 a book written by Dr. Elisabeth Kubler-Ross was published called "On Death and Dying" in which she introduced her theories on grief. She states that people who learn they are dying, or who have suffered great personal loss or tragedy, go through five stages of grief: denial, anger, bargaining, depression and finally, acceptance.
I do not want to write extensively on her model so I am including a link to a Wikipedia article on the subject for those who wish to know more. I certainly do not want to give incorrect information.
Kübler-Ross model - Wikipedia, the free encyclopedia
I learned about these stages of grief in nursing school and I saw examples of them often in my work. Kubler-Ross says that not everyone goes through all of the stages but they do go through at least two of them. They may not always be experienced in the order given either and some people go back and forth between the stages.
In a previous posting I mentioned that Papa and I have not really discussed his condition or his wishes in depth. Well... until thinking about this today, I believed I had not seen those stages of grief either. Now, reflecting on this, I believe I have seen at least two in him: denial and depression, and some in me too. I feel he is in denial because he doesn't HEAR what the doctors say, and also what they do not say. It's as if he is saying... they have given me this diagnosis but I know they don't really mean ME! It's not really as serious as they say it is.
As for anger... he has not really shown that. Maybe inside himself he does feel angry but there has been no outward sign... no rending of clothing, no screaming or throwing objects or wrecking furniture or punching holes in walls. This to me is unusual because I have always considered Papa to be an angry man. All of our lives together I have seen him be quick to anger and usually for no good or apparent reason and often out of proportion to whatever offense may have or have not happened. Perhaps this in it's self is a sign of grief because it is unusual behavior.
Bargaining is the same, I have not seen it but I do think this is something that people internalize. I'm sure he has done his bargaining... I can not imagine him not praying to God... please let me live long enough to see Lia and Mae and Noelle get married, I promise I will do better, go to church, treat my wife better, love my daughter unconditionally like You love me, give to charity, notdoallthebadthingIknowIshouldn'tdo... just give me five more years, three more, one more, please God.
Depression is a given with Papa. Just like anger, I believe he has lived with depression on and off for many years, sometimes worse than other times. I have even suggested several times that he ask our doctor about medication for depression but he never has. I think he doesn't take that suggestion seriously. I ask myself, how could he NOT be depressed, knowing that he may die soon, may die painfully? It would depress the hell outta me, I can tell you that. His days now pass with him sitting on the couch, in the favored spot where he can best see the TV. He has control of the remote most of the time but he does share. Daughter complains seldom when her father wants to watch MMA or yet another karate type movie. Mae-Mae brings her books and toys to her "Ming-o-ma" and he helps Eli get over his qualms about eating by praying for him to ease his fears. Right now he is not really down-and-out sick. He is tired most of the time and he has nausea now and then but he is not having the vomiting and/or diarrhea that so many chemo patients do. But that is his activity, sitting on the couch watching TV. We go for short rides around the countryside once or twice a week and we go to chemo. Other than that he is on the couch or in bed.
Yesterday he asked me to make him a sandwich. For many weeks now I have been trying to get him to do more for himself and finally I had just had enough. I yelled at him... you are not that sick Mike. You are quite capable of making your own damn sandwich. My work here has increased ten-fold since you have been home all the time and since the kids have moved in. It's a lot more work for me and for Melanie and you are perfectly able to do things for yourself.
I tried not to get angry with him but I was very angry, and out of proportion to the offense too. One thing about those stages of grief... they happen to family members too and I am also going through them. You know what? I feel like a real bitch right now, complaining about this. For the last several postings I have been getting responses from readers about what a good wife I am, how loving I am, how lucky Papa is and I feel guilty. I do not feel good or loving. I am angry on so many levels and for so many reasons. I am not ready to be his care-giver. I do not want to have to take care of him like I took care of his brother. I resent having to give up all my free time and the loss of my privacy. I was used to being alone and I rather liked it. My kids visited and then they went home, my husband was on the road and while I saw him most every day and he was home every weekend and several days during the week, still I had time to myself... time to read or sew or just do what ever I wanted. I feel I have earned these rights and now they are gone. This kind of thing was supposed to be years away yet, not now. I feel betrayed. I almost feel like he (Papa) did this to me... how incredibly wrong is that anyway? Remember what I said before? Humans plan and God laughs.
God, how horrible a person does that make me?? I am not sick... well, who knows? I could be...but I am not facing known death, albeit death that could yet be years away. I have not had my belly cut open and a large part of my insides removed, left with an enormous scar and a new abdominal topography. I am not the one that has had to endure the rigors of radiation and chemotherapy. I think I am a very selfish person. I need to remember that I am in my marriage for life, for better or worse, in sickness and health... all that stuff. We have had a lot of ups and downs, some very serious, and we have always managed to get through it. We will get through all this too. I will get through this.
So, grief... denial, anger, bargaining, depression and acceptance. I think we actually arrived at acceptance before we hit those other stages. After all, there is nothing we can do about the fate that has been handed us. We just have to learn a way to deal with it.
Papa and I have always loved the singer John Denver. I remember so clearly one vacation we took when we had our motor home. We went to Virginia and West Virginia and I remember driving through the Appalachian's listening to the 8-track ( see how long ago that was? lol) playing John Denver. I have been thinking about him for some reason, while writing today, and I remembered a song he wrote that I have always felt was as much about contemplating death as it is about contemplating life. I hope you will take a minute and read it.
Lyrics to Poems, Prayers And Promises by John Denver
I've been lately thinking about my life's time
all the things I've done and how it's been,
and I can't help believin' in my own mind
I know I'm gonna hate to see it end.
I've seen a lot of sunshine
slept out in the rain spent a night or two all on my own
I've known my lady's pleasures
had myself some friends
spent a time or two in my own home.
Days they pass so quickly now, the nights are seldom long
time around me whispers when it's cold.
The changes somehow frightens me, still I have to smile
it turns me on to think of growing old.
It's tho' my life's been good to me there's still so much to do
so many things my mind has never known
I'd like to raise a fam'ly
I'd like to sail away
dance across the mountains on the moon.
Ref.) I have to say it now it's been good life all in all,
it's really fine to have a chance to hang around.
and lie there by the fire and watch the evening tire,
while all my friends and my old lady sit and pass a pipe around
and talk of poems and prayers and promises and things that we believe in, how sweet it is to love someone, how right it is to care,
how long it's been since yesterday what about tomorrow and what about our dreams and all the memories we share
[ Poems, Prayers And Promises Lyrics on http://www.lyricsmania.com/ ]
I do not want to write extensively on her model so I am including a link to a Wikipedia article on the subject for those who wish to know more. I certainly do not want to give incorrect information.
Kübler-Ross model - Wikipedia, the free encyclopedia
I learned about these stages of grief in nursing school and I saw examples of them often in my work. Kubler-Ross says that not everyone goes through all of the stages but they do go through at least two of them. They may not always be experienced in the order given either and some people go back and forth between the stages.
In a previous posting I mentioned that Papa and I have not really discussed his condition or his wishes in depth. Well... until thinking about this today, I believed I had not seen those stages of grief either. Now, reflecting on this, I believe I have seen at least two in him: denial and depression, and some in me too. I feel he is in denial because he doesn't HEAR what the doctors say, and also what they do not say. It's as if he is saying... they have given me this diagnosis but I know they don't really mean ME! It's not really as serious as they say it is.
As for anger... he has not really shown that. Maybe inside himself he does feel angry but there has been no outward sign... no rending of clothing, no screaming or throwing objects or wrecking furniture or punching holes in walls. This to me is unusual because I have always considered Papa to be an angry man. All of our lives together I have seen him be quick to anger and usually for no good or apparent reason and often out of proportion to whatever offense may have or have not happened. Perhaps this in it's self is a sign of grief because it is unusual behavior.
Bargaining is the same, I have not seen it but I do think this is something that people internalize. I'm sure he has done his bargaining... I can not imagine him not praying to God... please let me live long enough to see Lia and Mae and Noelle get married, I promise I will do better, go to church, treat my wife better, love my daughter unconditionally like You love me, give to charity, notdoallthebadthingIknowIshouldn'tdo... just give me five more years, three more, one more, please God.
Depression is a given with Papa. Just like anger, I believe he has lived with depression on and off for many years, sometimes worse than other times. I have even suggested several times that he ask our doctor about medication for depression but he never has. I think he doesn't take that suggestion seriously. I ask myself, how could he NOT be depressed, knowing that he may die soon, may die painfully? It would depress the hell outta me, I can tell you that. His days now pass with him sitting on the couch, in the favored spot where he can best see the TV. He has control of the remote most of the time but he does share. Daughter complains seldom when her father wants to watch MMA or yet another karate type movie. Mae-Mae brings her books and toys to her "Ming-o-ma" and he helps Eli get over his qualms about eating by praying for him to ease his fears. Right now he is not really down-and-out sick. He is tired most of the time and he has nausea now and then but he is not having the vomiting and/or diarrhea that so many chemo patients do. But that is his activity, sitting on the couch watching TV. We go for short rides around the countryside once or twice a week and we go to chemo. Other than that he is on the couch or in bed.
Yesterday he asked me to make him a sandwich. For many weeks now I have been trying to get him to do more for himself and finally I had just had enough. I yelled at him... you are not that sick Mike. You are quite capable of making your own damn sandwich. My work here has increased ten-fold since you have been home all the time and since the kids have moved in. It's a lot more work for me and for Melanie and you are perfectly able to do things for yourself.
I tried not to get angry with him but I was very angry, and out of proportion to the offense too. One thing about those stages of grief... they happen to family members too and I am also going through them. You know what? I feel like a real bitch right now, complaining about this. For the last several postings I have been getting responses from readers about what a good wife I am, how loving I am, how lucky Papa is and I feel guilty. I do not feel good or loving. I am angry on so many levels and for so many reasons. I am not ready to be his care-giver. I do not want to have to take care of him like I took care of his brother. I resent having to give up all my free time and the loss of my privacy. I was used to being alone and I rather liked it. My kids visited and then they went home, my husband was on the road and while I saw him most every day and he was home every weekend and several days during the week, still I had time to myself... time to read or sew or just do what ever I wanted. I feel I have earned these rights and now they are gone. This kind of thing was supposed to be years away yet, not now. I feel betrayed. I almost feel like he (Papa) did this to me... how incredibly wrong is that anyway? Remember what I said before? Humans plan and God laughs.
God, how horrible a person does that make me?? I am not sick... well, who knows? I could be...but I am not facing known death, albeit death that could yet be years away. I have not had my belly cut open and a large part of my insides removed, left with an enormous scar and a new abdominal topography. I am not the one that has had to endure the rigors of radiation and chemotherapy. I think I am a very selfish person. I need to remember that I am in my marriage for life, for better or worse, in sickness and health... all that stuff. We have had a lot of ups and downs, some very serious, and we have always managed to get through it. We will get through all this too. I will get through this.
So, grief... denial, anger, bargaining, depression and acceptance. I think we actually arrived at acceptance before we hit those other stages. After all, there is nothing we can do about the fate that has been handed us. We just have to learn a way to deal with it.
Papa and I have always loved the singer John Denver. I remember so clearly one vacation we took when we had our motor home. We went to Virginia and West Virginia and I remember driving through the Appalachian's listening to the 8-track ( see how long ago that was? lol) playing John Denver. I have been thinking about him for some reason, while writing today, and I remembered a song he wrote that I have always felt was as much about contemplating death as it is about contemplating life. I hope you will take a minute and read it.
Lyrics to Poems, Prayers And Promises by John Denver
I've been lately thinking about my life's time
all the things I've done and how it's been,
and I can't help believin' in my own mind
I know I'm gonna hate to see it end.
I've seen a lot of sunshine
slept out in the rain spent a night or two all on my own
I've known my lady's pleasures
had myself some friends
spent a time or two in my own home.
Days they pass so quickly now, the nights are seldom long
time around me whispers when it's cold.
The changes somehow frightens me, still I have to smile
it turns me on to think of growing old.
It's tho' my life's been good to me there's still so much to do
so many things my mind has never known
I'd like to raise a fam'ly
I'd like to sail away
dance across the mountains on the moon.
Ref.) I have to say it now it's been good life all in all,
it's really fine to have a chance to hang around.
and lie there by the fire and watch the evening tire,
while all my friends and my old lady sit and pass a pipe around
and talk of poems and prayers and promises and things that we believe in, how sweet it is to love someone, how right it is to care,
how long it's been since yesterday what about tomorrow and what about our dreams and all the memories we share
[ Poems, Prayers And Promises Lyrics on http://www.lyricsmania.com/ ]
Wednesday, December 9, 2009
Prognosis?
They have never given Papa a solid prognosis. When he was first diagnosed the doctor painted a pretty grim future, at least I felt it was. Papa either did not really hear what the doctor was saying or he chose to ignore it. I think the surgeon was somewhat flustered. How does anyone get used to telling people they are probably going to die and suffer while doing it? I know that I felt a lot of empathy from him and he tried to be as straight forward as he could be. I understood him but Papa did not.
Immediately after the surgery the doctor told me he thought the cancer was already stage III. When our family doctor and I discussed this, she said if it was her, she would go home and spend as much time with her family as she could... she would not prolong things with radiation and/or chemo. Our oldest son, the RN, felt the same way, as did I.
I believe in life. I believe in God and I feel our lives are a gift from God. I also believe that death is a natural part of life. After all, no one gets out alive. Now, this does not mean that we should not fight for life when we have a chance. God has given us talented doctors, miraculous medicines, surgical techniques and tools that in other times would be considered witch craft, we should employ these gifts and thank Him for them. But as a nurse I have seen people waste what meager energy they have left, I have seen them waste resourses and exhaust their families, all in the hope of one more year, one more month, week, day... when there was never any real hope or because no one had taken the time to be honest with them.
When do we draw the line and say this is where I stop? This is where I make my stand? For me it means no ventilator if there is no hope of recovery, no CPR in an unwitnessed cardiac event, and if I am considered vegetative, no chemo, no radiation, no tube feedings, no dialysis, no antibiotics... just please keep me pain free and for God's sake, give me what meds it takes to be pain free and forget worrying about addiction to pain killers. People need to take their collective heads out of the sand and give this thought before it becomes a necessity and please write it down, make it known, review it once in a while too.
When I ask Papa what he wants, what his advance directives are, he always says "I want the same as you do," but he never specifically mentions any directions. We never really talk about him possibly being terminal either, he skates around the issue like he is on thin ice and I guess he actually may be. After the specimens came back from the lab Papa's cancer was declared to be in stage II. In our minds this announcement gave us the "go-ahead" for his radiation and chemo. The doctor said that given the size of the tumor, that Papa has about a 20% chance of making it to the 5 year survival point. That means an 80% chance that he won't make it to 5 years. Those are not very good odds. But people have come out of the woodwork telling us about their neighbor or uncle or sister-in-law's mother's brother, who had pancreatic cancer in stage IV and is now 82 and rakes his own leaves and does his own shopping etc. So one day prior to the beginning of treatment I point blank asked the surgeon what he would do in this circumstance and he said he would go ahead with the radiation and chemo so that is what we have done.
Was he honest with us? Part of me says yes, he was honest, part says no, that he felt an obligation to tell Papa to fight as hard as he could so that horrid, painful surgery that he had inflicted on Papa would not be in vain.
Last week at chemo I met an elderly woman, 75 she is. She had cancer many years ago, it was thought gone but it came back. She is very frail and also very forgetful but she said to me... "I don't want this, I'm too old for all this, but what can I do? They say I have to." She indicated her son. This is the reason for making sure your wishes are known. If my children were to ever do that to me, I would come back and haunt them.
Immediately after the surgery the doctor told me he thought the cancer was already stage III. When our family doctor and I discussed this, she said if it was her, she would go home and spend as much time with her family as she could... she would not prolong things with radiation and/or chemo. Our oldest son, the RN, felt the same way, as did I.
I believe in life. I believe in God and I feel our lives are a gift from God. I also believe that death is a natural part of life. After all, no one gets out alive. Now, this does not mean that we should not fight for life when we have a chance. God has given us talented doctors, miraculous medicines, surgical techniques and tools that in other times would be considered witch craft, we should employ these gifts and thank Him for them. But as a nurse I have seen people waste what meager energy they have left, I have seen them waste resourses and exhaust their families, all in the hope of one more year, one more month, week, day... when there was never any real hope or because no one had taken the time to be honest with them.
When do we draw the line and say this is where I stop? This is where I make my stand? For me it means no ventilator if there is no hope of recovery, no CPR in an unwitnessed cardiac event, and if I am considered vegetative, no chemo, no radiation, no tube feedings, no dialysis, no antibiotics... just please keep me pain free and for God's sake, give me what meds it takes to be pain free and forget worrying about addiction to pain killers. People need to take their collective heads out of the sand and give this thought before it becomes a necessity and please write it down, make it known, review it once in a while too.
When I ask Papa what he wants, what his advance directives are, he always says "I want the same as you do," but he never specifically mentions any directions. We never really talk about him possibly being terminal either, he skates around the issue like he is on thin ice and I guess he actually may be. After the specimens came back from the lab Papa's cancer was declared to be in stage II. In our minds this announcement gave us the "go-ahead" for his radiation and chemo. The doctor said that given the size of the tumor, that Papa has about a 20% chance of making it to the 5 year survival point. That means an 80% chance that he won't make it to 5 years. Those are not very good odds. But people have come out of the woodwork telling us about their neighbor or uncle or sister-in-law's mother's brother, who had pancreatic cancer in stage IV and is now 82 and rakes his own leaves and does his own shopping etc. So one day prior to the beginning of treatment I point blank asked the surgeon what he would do in this circumstance and he said he would go ahead with the radiation and chemo so that is what we have done.
Was he honest with us? Part of me says yes, he was honest, part says no, that he felt an obligation to tell Papa to fight as hard as he could so that horrid, painful surgery that he had inflicted on Papa would not be in vain.
Last week at chemo I met an elderly woman, 75 she is. She had cancer many years ago, it was thought gone but it came back. She is very frail and also very forgetful but she said to me... "I don't want this, I'm too old for all this, but what can I do? They say I have to." She indicated her son. This is the reason for making sure your wishes are known. If my children were to ever do that to me, I would come back and haunt them.
Tuesday, November 24, 2009
Thank You
Tomorrow is the day before Thanksgiving and I have so much to be thankful for this year... always but especially this year. I am thankful for my husband's life, for the surgeon's that worked on him and the doctors that continue to treat him. I am thankful for my children and my beautiful, funny, special grandchildren. I would take them gladly, even without their parents attached. I am thankful that I can sleep without as much fear for the present time and I hope that the fear continues to lessen.
I am thankful too, for the nurses at chemo and radiation and the other patients we have met. Way back in August, when radiation and chemo started, I quickly saw that the patients develop a camaraderie between themselves and with the care givers. Even if you are only waiting for five minutes, you can learn a lot about other people and get to be a friend, if even a silent friend.
The very first radiation treatment we saw this man... his face is terribly disfigured by tumors. He has had surgery and part of his jaw is missing, his lower face is caved in, he can not talk at all and he also has a tracheostomy. When I saw him I was dismayed... Papa's cancer was still new and I knew he was thinking... what if something like that happens to me? The man is in a wheelchair and he is always accompanied by his wife/girlriend and a male caregiver. She is a really upbeat person, very skinny, she wears holey jeans and sneakers and sleeveless tee shirts, she has tatts here and there, long curly blond hair that she holds back with a bandana and several beepers and cells clipped to her belt next to the chain to her biker wallet. I know I am presuming but to me she looks "rough." But she so obviously loves this man and you can tell that she sees past his disfigurement, right to the heart of him. She strides around the facility, loud and brash, talking to him but loud enough that everyone must hear her. "Nothing is going to get the best of the man I love," she says. "You are strong and you are going to fight." He shakes his head in agreement, he has no choice. The caregiver is a quiet presence.
I have never seen her in a pensive or depressive mood. I know her husband must be a lot to care for. I have taken care of people with similar problems and it is very difficult work. She may have a caregiver to help her but I am willing to bet that he is only there during the day and probably not on weekends... I could be wrong, but I doubt it. Did I ever tell you I am never wrong? : ) We saw this man every time we went to radiation. One day they changed the time of Papa's treatments and the man had his times changed too and was still with us. Now that we are done with radiation we see him at chemo and gradually I have begun to see a change in him. His tumors have just about disappeared and his face is less red and swollen than it was. He coughs less and he is stronger... I saw him walk himself to the bathroom the other day. He glances our way now and then and I smile. His wife gives me a"thumbs up" and a wave and I return it. We never talk although I am dying with curiosity to know the particulars of his disease and what they are doing about it. I want to know his prognosis too, although I have a feeling she would not let it be anything less than "excellent."
There was another couple that we met at radiation, a man in his 90's and his wife. The man is very hard of hearing and uses a cane. He looks very hale and hearty, not sick at all and she is a hoot! I am guessing that she is quite a bit younger than the man. She wears very stylish clothes and has an up to date hair style. She is very funny and makes everyone laugh. He has lung cancer and is receiving radiation for it but at the time we met them he had not had surgery and it was my impression that he was not going to have any kind of surgery. He does not get chemo either. He sits and smiles, oblivious to what is being said around him, his hands resting atop his cane handle while she rattles away, telling jokes and interrogating everyone around her. I should have asked her about the man in the wheelchair because I bet she knows all about him. This older couple live some distance from us and the radiation is a burden on them. They used to be horse breeders/trainers and live out in the boonies. It takes them an hour drive to and from treatments and he is getting two treatments every day, five days a week. They have no where to go between treatments so they go and sit in a courtyard at the nearby mall. I am sorry to say that we lost track of them some weeks ago when Papa was done with radiation. I wonder how they are doing.
The nurses are great too. One day, maybe the third chemo treatment, grandson Elijah was having some medical problems and daughter took him to the doctor. Papa and I are sitting in chemo when daughter calls and casually tells me that Eli has to have blood work cause his symptoms could be those of leukemia. My heart plunged out of my body, straight to the basement of the facility. I almost threw up right then and there. Daughter knew something was wrong and asked me what it was and I asked her, "don't you know what leukemia is"? She said no, not really, and I reminded her that leukemia is what Borch had died of. (Borch was an old girlfriend of #2 son... a girl we all loved who was bright and funny and smart and full of promise. It was she that coined our family name... "Jeaners." She got leukemia at about 19 years old, went into remission and then died quickly when it returned with a vengeance.)
When we hung up I started crying, deep wrenching sobs and I could not stop. I could not stop, it was almost worse than when Eli was born, a tiny preemie with a head the size of a tennis ball, only 1 pound, 9 ounces. How can I tell you how awful that time was for us, sick with worry about that tiny baby? I knew I could not handle him having leukemia on top of Papa and his illness, I could not imagine how we would work things out logistically. A thousand questions raced through my head... would they send him to St Jude's (St Judes is daughters favorite charity)? Who would take care of Maeva during the times I couldn't? Would Ryan's job let him have the necessary time off? Would Eli's skinny little body be able to fight this off when so many others had not? Would he understand all the tests and the hurt and pain he would have to go through? Would we be able to handle it for his sake? What would Mae-Mae do with out her big brother that she loves so very much, not to mention her beloved Papa? I think I had them both buried right then and there. I was filled with the darkest despair.
Papa's nurse came over, handed me some tissues and sat with us for a while. Papa is very carefully ignoring my antics, watching TV, trying not to lose his composure too. I do not remember what she said to me, it's all a blur. All I can hope is that sometime in my nursing career I was that helpful to some patient and/or their family. She helped me to remember my faith and the knowledge that God does not leave us alone to handle anything, big or small, that may hurt or trouble us... He is always with us, all we have to do is ask for His help. I am so grateful to say that Eli only had an infection and it did not turn out to be leukemia... he's ok.
Thank you.
I am thankful too, for the nurses at chemo and radiation and the other patients we have met. Way back in August, when radiation and chemo started, I quickly saw that the patients develop a camaraderie between themselves and with the care givers. Even if you are only waiting for five minutes, you can learn a lot about other people and get to be a friend, if even a silent friend.
The very first radiation treatment we saw this man... his face is terribly disfigured by tumors. He has had surgery and part of his jaw is missing, his lower face is caved in, he can not talk at all and he also has a tracheostomy. When I saw him I was dismayed... Papa's cancer was still new and I knew he was thinking... what if something like that happens to me? The man is in a wheelchair and he is always accompanied by his wife/girlriend and a male caregiver. She is a really upbeat person, very skinny, she wears holey jeans and sneakers and sleeveless tee shirts, she has tatts here and there, long curly blond hair that she holds back with a bandana and several beepers and cells clipped to her belt next to the chain to her biker wallet. I know I am presuming but to me she looks "rough." But she so obviously loves this man and you can tell that she sees past his disfigurement, right to the heart of him. She strides around the facility, loud and brash, talking to him but loud enough that everyone must hear her. "Nothing is going to get the best of the man I love," she says. "You are strong and you are going to fight." He shakes his head in agreement, he has no choice. The caregiver is a quiet presence.
I have never seen her in a pensive or depressive mood. I know her husband must be a lot to care for. I have taken care of people with similar problems and it is very difficult work. She may have a caregiver to help her but I am willing to bet that he is only there during the day and probably not on weekends... I could be wrong, but I doubt it. Did I ever tell you I am never wrong? : ) We saw this man every time we went to radiation. One day they changed the time of Papa's treatments and the man had his times changed too and was still with us. Now that we are done with radiation we see him at chemo and gradually I have begun to see a change in him. His tumors have just about disappeared and his face is less red and swollen than it was. He coughs less and he is stronger... I saw him walk himself to the bathroom the other day. He glances our way now and then and I smile. His wife gives me a"thumbs up" and a wave and I return it. We never talk although I am dying with curiosity to know the particulars of his disease and what they are doing about it. I want to know his prognosis too, although I have a feeling she would not let it be anything less than "excellent."
There was another couple that we met at radiation, a man in his 90's and his wife. The man is very hard of hearing and uses a cane. He looks very hale and hearty, not sick at all and she is a hoot! I am guessing that she is quite a bit younger than the man. She wears very stylish clothes and has an up to date hair style. She is very funny and makes everyone laugh. He has lung cancer and is receiving radiation for it but at the time we met them he had not had surgery and it was my impression that he was not going to have any kind of surgery. He does not get chemo either. He sits and smiles, oblivious to what is being said around him, his hands resting atop his cane handle while she rattles away, telling jokes and interrogating everyone around her. I should have asked her about the man in the wheelchair because I bet she knows all about him. This older couple live some distance from us and the radiation is a burden on them. They used to be horse breeders/trainers and live out in the boonies. It takes them an hour drive to and from treatments and he is getting two treatments every day, five days a week. They have no where to go between treatments so they go and sit in a courtyard at the nearby mall. I am sorry to say that we lost track of them some weeks ago when Papa was done with radiation. I wonder how they are doing.
The nurses are great too. One day, maybe the third chemo treatment, grandson Elijah was having some medical problems and daughter took him to the doctor. Papa and I are sitting in chemo when daughter calls and casually tells me that Eli has to have blood work cause his symptoms could be those of leukemia. My heart plunged out of my body, straight to the basement of the facility. I almost threw up right then and there. Daughter knew something was wrong and asked me what it was and I asked her, "don't you know what leukemia is"? She said no, not really, and I reminded her that leukemia is what Borch had died of. (Borch was an old girlfriend of #2 son... a girl we all loved who was bright and funny and smart and full of promise. It was she that coined our family name... "Jeaners." She got leukemia at about 19 years old, went into remission and then died quickly when it returned with a vengeance.)
When we hung up I started crying, deep wrenching sobs and I could not stop. I could not stop, it was almost worse than when Eli was born, a tiny preemie with a head the size of a tennis ball, only 1 pound, 9 ounces. How can I tell you how awful that time was for us, sick with worry about that tiny baby? I knew I could not handle him having leukemia on top of Papa and his illness, I could not imagine how we would work things out logistically. A thousand questions raced through my head... would they send him to St Jude's (St Judes is daughters favorite charity)? Who would take care of Maeva during the times I couldn't? Would Ryan's job let him have the necessary time off? Would Eli's skinny little body be able to fight this off when so many others had not? Would he understand all the tests and the hurt and pain he would have to go through? Would we be able to handle it for his sake? What would Mae-Mae do with out her big brother that she loves so very much, not to mention her beloved Papa? I think I had them both buried right then and there. I was filled with the darkest despair.
Papa's nurse came over, handed me some tissues and sat with us for a while. Papa is very carefully ignoring my antics, watching TV, trying not to lose his composure too. I do not remember what she said to me, it's all a blur. All I can hope is that sometime in my nursing career I was that helpful to some patient and/or their family. She helped me to remember my faith and the knowledge that God does not leave us alone to handle anything, big or small, that may hurt or trouble us... He is always with us, all we have to do is ask for His help. I am so grateful to say that Eli only had an infection and it did not turn out to be leukemia... he's ok.
Thank you.
Tuesday, November 10, 2009
Did we even have summer?
Papa began chemo and radiation the first week of August, in fact, his first chemo was on his birthday. The nurses gave him a coffee cup with a bow tied to the handle, filled with Hershey Miniatures... I think they have a cupboard stocked with them. I always thought that it was chemo that was the worst but in Papa's case I am wrong. It took about two weeks of radiation treatments before the effects really showed up. For him it was the fatigue that bothered him the most, that and the unrelenting nausea. The doctor ordered Compazine for mild nausea and Zofran for the more severe nausea. I make sure we never run out of those meds.
Our days were fashioned around the packing and moving-in of the kids, me watching the grands and Papa's treatments. Radiation took very little time actually... only 12 minutes for the treatment, but sometimes we had to wait to get in for his appointment. Then too, just the fact of having to GO, of working it in to our schedule, put a crimp on the day. Radiation was every day, Monday through Friday. It becomes a drag very quickly. Chemo was every Wednesday, for at least an hour and a half. The staff at both places was great and at chemo they have personal TV's for us to watch and snacks and those little diversions help.
At the end of August I made two important steps, tasks that I had been dreading because a negative outcome in either could mean disaster for us. First I went to see the IRS. The very words "IRS" strike fear in the hearts of most people... myself amoung them. We had gotten in debt to them so quickly years ago and I never believed we would ever be able to get them paid off. We lost two deductions at the same time and then my working added to our tax liability. Another factor was Papa's job and the per diem pay he received. He was not able to use many of the deductions for truckers. I was hoping that I would be able to put a hold on our arranged payments till Papa started receiving his disability. I have to say the agent was very helpful and sympathetic. I am boo-hooing like a waterfall, about to scream because of the tension I am under and she hands me tissues and basically said..."there there." Our account was put on hold for as long as we need it and she said that we can make a compromise settlement if we can come up with a few hundred dollars to offer the IRS.
A few hundred to erase several thousand? I will find it somewhere, even if I have to get it from my kids.
The next day I finally went to the Department of Human Services... welfare, and applied for medicaid for Papa. Our bank account was now low enough that we could qualify for at least some help. The office was packed to the walls, standing room only. I expected to be there all day. I filled out my papers, handed them in and about 45 minutes later a woman called my name. When I went to see her we began conversing at the side of the room, and she proceeded to tell me what documents she needed me to bring to my case worker. I am embarrassed to say that I started crying right there in the waiting room in front of all those people. In my defense I have to tell you, I cry very easily, I am a big sap. I cry at favorite hymns in church, Christmas Eve service, I cry looking at family photo albums... I cry when holding my grand babies, at their profound beauty and purity. I cry at movies and my kids laugh and take bets at which point my water-works will start. They watch me rather than the movie.
The DHS woman took pity on me and showed me to her office where I apologized and explained our situation to her... that we had very little income and our insurance was coming to an end. My husband needed months more of chemo and many more radiation treatments. She quickly glanced through my forms and told me not to worry. She said that she was a supervisor and while she had only a very small case load herself, she was going to personally handle Papa's case. She said that the paper work was only a formality and she could tell me that his case would be approved for full medicaid. I left her office feeling better than I had since this ordeal had begun. I knew that my husband would not be turned away because we could not pay. I did not have to worry that I might have to sell our house to pay the bills. There actually was help out there for us. I think that night I finally was able to sleep, the sleep of the blessed, I felt that we would be ok, that now we would be able to get through this mess.
All this time of course, the Healthcare debate is raging around us. As much as I know the outcome will affect us, I have not been able to follow this as I should. I have no idea what is going on around me. I watch the news and read the paper but nothing is absorbing. I found that the days were flying by at an alarming rate. My mother-in-law used to say (she is long dead) that the older one gets, the faster time goes by. This is certainly true. I remember at age 8 the summers were forever and full of endless possibilities. But this summer was like the blink of a fire fly... it drags a bit and leaves a shadow of it's light behind. We never did have a real "Michigan" summer. No scorching hot weather, so muggy that it makes it hard to breathe. The cicadas were hardly even heard this year.
Soon Labor Day was here and my son Ben hosted a BBQ at his home, ostensibly for friends and family, but it was really for Papa... to give him a chance to see most of his kids, to enjoy a bon fire, good food, good friends, good fun. We had a lovely time and he was able to eat a hot dog and some baked beans and some grilled chicken. Of course he ate too much... an old and bad habit. In times past Papa's stomach could keep up with his eyes but not anymore. If he over eats he pays dearly with pain and nausea and general someone-please-put-an-end-to-my-miseryness
Our days were fashioned around the packing and moving-in of the kids, me watching the grands and Papa's treatments. Radiation took very little time actually... only 12 minutes for the treatment, but sometimes we had to wait to get in for his appointment. Then too, just the fact of having to GO, of working it in to our schedule, put a crimp on the day. Radiation was every day, Monday through Friday. It becomes a drag very quickly. Chemo was every Wednesday, for at least an hour and a half. The staff at both places was great and at chemo they have personal TV's for us to watch and snacks and those little diversions help.
At the end of August I made two important steps, tasks that I had been dreading because a negative outcome in either could mean disaster for us. First I went to see the IRS. The very words "IRS" strike fear in the hearts of most people... myself amoung them. We had gotten in debt to them so quickly years ago and I never believed we would ever be able to get them paid off. We lost two deductions at the same time and then my working added to our tax liability. Another factor was Papa's job and the per diem pay he received. He was not able to use many of the deductions for truckers. I was hoping that I would be able to put a hold on our arranged payments till Papa started receiving his disability. I have to say the agent was very helpful and sympathetic. I am boo-hooing like a waterfall, about to scream because of the tension I am under and she hands me tissues and basically said..."there there." Our account was put on hold for as long as we need it and she said that we can make a compromise settlement if we can come up with a few hundred dollars to offer the IRS.
A few hundred to erase several thousand? I will find it somewhere, even if I have to get it from my kids.
The next day I finally went to the Department of Human Services... welfare, and applied for medicaid for Papa. Our bank account was now low enough that we could qualify for at least some help. The office was packed to the walls, standing room only. I expected to be there all day. I filled out my papers, handed them in and about 45 minutes later a woman called my name. When I went to see her we began conversing at the side of the room, and she proceeded to tell me what documents she needed me to bring to my case worker. I am embarrassed to say that I started crying right there in the waiting room in front of all those people. In my defense I have to tell you, I cry very easily, I am a big sap. I cry at favorite hymns in church, Christmas Eve service, I cry looking at family photo albums... I cry when holding my grand babies, at their profound beauty and purity. I cry at movies and my kids laugh and take bets at which point my water-works will start. They watch me rather than the movie.
The DHS woman took pity on me and showed me to her office where I apologized and explained our situation to her... that we had very little income and our insurance was coming to an end. My husband needed months more of chemo and many more radiation treatments. She quickly glanced through my forms and told me not to worry. She said that she was a supervisor and while she had only a very small case load herself, she was going to personally handle Papa's case. She said that the paper work was only a formality and she could tell me that his case would be approved for full medicaid. I left her office feeling better than I had since this ordeal had begun. I knew that my husband would not be turned away because we could not pay. I did not have to worry that I might have to sell our house to pay the bills. There actually was help out there for us. I think that night I finally was able to sleep, the sleep of the blessed, I felt that we would be ok, that now we would be able to get through this mess.
All this time of course, the Healthcare debate is raging around us. As much as I know the outcome will affect us, I have not been able to follow this as I should. I have no idea what is going on around me. I watch the news and read the paper but nothing is absorbing. I found that the days were flying by at an alarming rate. My mother-in-law used to say (she is long dead) that the older one gets, the faster time goes by. This is certainly true. I remember at age 8 the summers were forever and full of endless possibilities. But this summer was like the blink of a fire fly... it drags a bit and leaves a shadow of it's light behind. We never did have a real "Michigan" summer. No scorching hot weather, so muggy that it makes it hard to breathe. The cicadas were hardly even heard this year.
Soon Labor Day was here and my son Ben hosted a BBQ at his home, ostensibly for friends and family, but it was really for Papa... to give him a chance to see most of his kids, to enjoy a bon fire, good food, good friends, good fun. We had a lovely time and he was able to eat a hot dog and some baked beans and some grilled chicken. Of course he ate too much... an old and bad habit. In times past Papa's stomach could keep up with his eyes but not anymore. If he over eats he pays dearly with pain and nausea and general someone-please-put-an-end-to-my-miseryness
Thursday, October 29, 2009
Second Consequence
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.
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.
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?
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