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.
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