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.
Tuesday, March 23, 2010
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.
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