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.
Wednesday, January 27, 2010
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."
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