In 1969 a book written by Dr. Elisabeth Kubler-Ross was published called "On Death and Dying" in which she introduced her theories on grief. She states that people who learn they are dying, or who have suffered great personal loss or tragedy, go through five stages of grief: denial, anger, bargaining, depression and finally, acceptance.
I do not want to write extensively on her model so I am including a link to a Wikipedia article on the subject for those who wish to know more. I certainly do not want to give incorrect information.
Kübler-Ross model - Wikipedia, the free encyclopedia
I learned about these stages of grief in nursing school and I saw examples of them often in my work. Kubler-Ross says that not everyone goes through all of the stages but they do go through at least two of them. They may not always be experienced in the order given either and some people go back and forth between the stages.
In a previous posting I mentioned that Papa and I have not really discussed his condition or his wishes in depth. Well... until thinking about this today, I believed I had not seen those stages of grief either. Now, reflecting on this, I believe I have seen at least two in him: denial and depression, and some in me too. I feel he is in denial because he doesn't HEAR what the doctors say, and also what they do not say. It's as if he is saying... they have given me this diagnosis but I know they don't really mean ME! It's not really as serious as they say it is.
As for anger... he has not really shown that. Maybe inside himself he does feel angry but there has been no outward sign... no rending of clothing, no screaming or throwing objects or wrecking furniture or punching holes in walls. This to me is unusual because I have always considered Papa to be an angry man. All of our lives together I have seen him be quick to anger and usually for no good or apparent reason and often out of proportion to whatever offense may have or have not happened. Perhaps this in it's self is a sign of grief because it is unusual behavior.
Bargaining is the same, I have not seen it but I do think this is something that people internalize. I'm sure he has done his bargaining... I can not imagine him not praying to God... please let me live long enough to see Lia and Mae and Noelle get married, I promise I will do better, go to church, treat my wife better, love my daughter unconditionally like You love me, give to charity, notdoallthebadthingIknowIshouldn'tdo... just give me five more years, three more, one more, please God.
Depression is a given with Papa. Just like anger, I believe he has lived with depression on and off for many years, sometimes worse than other times. I have even suggested several times that he ask our doctor about medication for depression but he never has. I think he doesn't take that suggestion seriously. I ask myself, how could he NOT be depressed, knowing that he may die soon, may die painfully? It would depress the hell outta me, I can tell you that. His days now pass with him sitting on the couch, in the favored spot where he can best see the TV. He has control of the remote most of the time but he does share. Daughter complains seldom when her father wants to watch MMA or yet another karate type movie. Mae-Mae brings her books and toys to her "Ming-o-ma" and he helps Eli get over his qualms about eating by praying for him to ease his fears. Right now he is not really down-and-out sick. He is tired most of the time and he has nausea now and then but he is not having the vomiting and/or diarrhea that so many chemo patients do. But that is his activity, sitting on the couch watching TV. We go for short rides around the countryside once or twice a week and we go to chemo. Other than that he is on the couch or in bed.
Yesterday he asked me to make him a sandwich. For many weeks now I have been trying to get him to do more for himself and finally I had just had enough. I yelled at him... you are not that sick Mike. You are quite capable of making your own damn sandwich. My work here has increased ten-fold since you have been home all the time and since the kids have moved in. It's a lot more work for me and for Melanie and you are perfectly able to do things for yourself.
I tried not to get angry with him but I was very angry, and out of proportion to the offense too. One thing about those stages of grief... they happen to family members too and I am also going through them. You know what? I feel like a real bitch right now, complaining about this. For the last several postings I have been getting responses from readers about what a good wife I am, how loving I am, how lucky Papa is and I feel guilty. I do not feel good or loving. I am angry on so many levels and for so many reasons. I am not ready to be his care-giver. I do not want to have to take care of him like I took care of his brother. I resent having to give up all my free time and the loss of my privacy. I was used to being alone and I rather liked it. My kids visited and then they went home, my husband was on the road and while I saw him most every day and he was home every weekend and several days during the week, still I had time to myself... time to read or sew or just do what ever I wanted. I feel I have earned these rights and now they are gone. This kind of thing was supposed to be years away yet, not now. I feel betrayed. I almost feel like he (Papa) did this to me... how incredibly wrong is that anyway? Remember what I said before? Humans plan and God laughs.
God, how horrible a person does that make me?? I am not sick... well, who knows? I could be...but I am not facing known death, albeit death that could yet be years away. I have not had my belly cut open and a large part of my insides removed, left with an enormous scar and a new abdominal topography. I am not the one that has had to endure the rigors of radiation and chemotherapy. I think I am a very selfish person. I need to remember that I am in my marriage for life, for better or worse, in sickness and health... all that stuff. We have had a lot of ups and downs, some very serious, and we have always managed to get through it. We will get through all this too. I will get through this.
So, grief... denial, anger, bargaining, depression and acceptance. I think we actually arrived at acceptance before we hit those other stages. After all, there is nothing we can do about the fate that has been handed us. We just have to learn a way to deal with it.
Papa and I have always loved the singer John Denver. I remember so clearly one vacation we took when we had our motor home. We went to Virginia and West Virginia and I remember driving through the Appalachian's listening to the 8-track ( see how long ago that was? lol) playing John Denver. I have been thinking about him for some reason, while writing today, and I remembered a song he wrote that I have always felt was as much about contemplating death as it is about contemplating life. I hope you will take a minute and read it.
Lyrics to Poems, Prayers And Promises by John Denver
I've been lately thinking about my life's time
all the things I've done and how it's been,
and I can't help believin' in my own mind
I know I'm gonna hate to see it end.
I've seen a lot of sunshine
slept out in the rain spent a night or two all on my own
I've known my lady's pleasures
had myself some friends
spent a time or two in my own home.
Days they pass so quickly now, the nights are seldom long
time around me whispers when it's cold.
The changes somehow frightens me, still I have to smile
it turns me on to think of growing old.
It's tho' my life's been good to me there's still so much to do
so many things my mind has never known
I'd like to raise a fam'ly
I'd like to sail away
dance across the mountains on the moon.
Ref.) I have to say it now it's been good life all in all,
it's really fine to have a chance to hang around.
and lie there by the fire and watch the evening tire,
while all my friends and my old lady sit and pass a pipe around
and talk of poems and prayers and promises and things that we believe in, how sweet it is to love someone, how right it is to care,
how long it's been since yesterday what about tomorrow and what about our dreams and all the memories we share
[ Poems, Prayers And Promises Lyrics on http://www.lyricsmania.com/ ]
Wednesday, December 16, 2009
Wednesday, December 9, 2009
Prognosis?
They have never given Papa a solid prognosis. When he was first diagnosed the doctor painted a pretty grim future, at least I felt it was. Papa either did not really hear what the doctor was saying or he chose to ignore it. I think the surgeon was somewhat flustered. How does anyone get used to telling people they are probably going to die and suffer while doing it? I know that I felt a lot of empathy from him and he tried to be as straight forward as he could be. I understood him but Papa did not.
Immediately after the surgery the doctor told me he thought the cancer was already stage III. When our family doctor and I discussed this, she said if it was her, she would go home and spend as much time with her family as she could... she would not prolong things with radiation and/or chemo. Our oldest son, the RN, felt the same way, as did I.
I believe in life. I believe in God and I feel our lives are a gift from God. I also believe that death is a natural part of life. After all, no one gets out alive. Now, this does not mean that we should not fight for life when we have a chance. God has given us talented doctors, miraculous medicines, surgical techniques and tools that in other times would be considered witch craft, we should employ these gifts and thank Him for them. But as a nurse I have seen people waste what meager energy they have left, I have seen them waste resourses and exhaust their families, all in the hope of one more year, one more month, week, day... when there was never any real hope or because no one had taken the time to be honest with them.
When do we draw the line and say this is where I stop? This is where I make my stand? For me it means no ventilator if there is no hope of recovery, no CPR in an unwitnessed cardiac event, and if I am considered vegetative, no chemo, no radiation, no tube feedings, no dialysis, no antibiotics... just please keep me pain free and for God's sake, give me what meds it takes to be pain free and forget worrying about addiction to pain killers. People need to take their collective heads out of the sand and give this thought before it becomes a necessity and please write it down, make it known, review it once in a while too.
When I ask Papa what he wants, what his advance directives are, he always says "I want the same as you do," but he never specifically mentions any directions. We never really talk about him possibly being terminal either, he skates around the issue like he is on thin ice and I guess he actually may be. After the specimens came back from the lab Papa's cancer was declared to be in stage II. In our minds this announcement gave us the "go-ahead" for his radiation and chemo. The doctor said that given the size of the tumor, that Papa has about a 20% chance of making it to the 5 year survival point. That means an 80% chance that he won't make it to 5 years. Those are not very good odds. But people have come out of the woodwork telling us about their neighbor or uncle or sister-in-law's mother's brother, who had pancreatic cancer in stage IV and is now 82 and rakes his own leaves and does his own shopping etc. So one day prior to the beginning of treatment I point blank asked the surgeon what he would do in this circumstance and he said he would go ahead with the radiation and chemo so that is what we have done.
Was he honest with us? Part of me says yes, he was honest, part says no, that he felt an obligation to tell Papa to fight as hard as he could so that horrid, painful surgery that he had inflicted on Papa would not be in vain.
Last week at chemo I met an elderly woman, 75 she is. She had cancer many years ago, it was thought gone but it came back. She is very frail and also very forgetful but she said to me... "I don't want this, I'm too old for all this, but what can I do? They say I have to." She indicated her son. This is the reason for making sure your wishes are known. If my children were to ever do that to me, I would come back and haunt them.
Immediately after the surgery the doctor told me he thought the cancer was already stage III. When our family doctor and I discussed this, she said if it was her, she would go home and spend as much time with her family as she could... she would not prolong things with radiation and/or chemo. Our oldest son, the RN, felt the same way, as did I.
I believe in life. I believe in God and I feel our lives are a gift from God. I also believe that death is a natural part of life. After all, no one gets out alive. Now, this does not mean that we should not fight for life when we have a chance. God has given us talented doctors, miraculous medicines, surgical techniques and tools that in other times would be considered witch craft, we should employ these gifts and thank Him for them. But as a nurse I have seen people waste what meager energy they have left, I have seen them waste resourses and exhaust their families, all in the hope of one more year, one more month, week, day... when there was never any real hope or because no one had taken the time to be honest with them.
When do we draw the line and say this is where I stop? This is where I make my stand? For me it means no ventilator if there is no hope of recovery, no CPR in an unwitnessed cardiac event, and if I am considered vegetative, no chemo, no radiation, no tube feedings, no dialysis, no antibiotics... just please keep me pain free and for God's sake, give me what meds it takes to be pain free and forget worrying about addiction to pain killers. People need to take their collective heads out of the sand and give this thought before it becomes a necessity and please write it down, make it known, review it once in a while too.
When I ask Papa what he wants, what his advance directives are, he always says "I want the same as you do," but he never specifically mentions any directions. We never really talk about him possibly being terminal either, he skates around the issue like he is on thin ice and I guess he actually may be. After the specimens came back from the lab Papa's cancer was declared to be in stage II. In our minds this announcement gave us the "go-ahead" for his radiation and chemo. The doctor said that given the size of the tumor, that Papa has about a 20% chance of making it to the 5 year survival point. That means an 80% chance that he won't make it to 5 years. Those are not very good odds. But people have come out of the woodwork telling us about their neighbor or uncle or sister-in-law's mother's brother, who had pancreatic cancer in stage IV and is now 82 and rakes his own leaves and does his own shopping etc. So one day prior to the beginning of treatment I point blank asked the surgeon what he would do in this circumstance and he said he would go ahead with the radiation and chemo so that is what we have done.
Was he honest with us? Part of me says yes, he was honest, part says no, that he felt an obligation to tell Papa to fight as hard as he could so that horrid, painful surgery that he had inflicted on Papa would not be in vain.
Last week at chemo I met an elderly woman, 75 she is. She had cancer many years ago, it was thought gone but it came back. She is very frail and also very forgetful but she said to me... "I don't want this, I'm too old for all this, but what can I do? They say I have to." She indicated her son. This is the reason for making sure your wishes are known. If my children were to ever do that to me, I would come back and haunt them.
Tuesday, November 24, 2009
Thank You
Tomorrow is the day before Thanksgiving and I have so much to be thankful for this year... always but especially this year. I am thankful for my husband's life, for the surgeon's that worked on him and the doctors that continue to treat him. I am thankful for my children and my beautiful, funny, special grandchildren. I would take them gladly, even without their parents attached. I am thankful that I can sleep without as much fear for the present time and I hope that the fear continues to lessen.
I am thankful too, for the nurses at chemo and radiation and the other patients we have met. Way back in August, when radiation and chemo started, I quickly saw that the patients develop a camaraderie between themselves and with the care givers. Even if you are only waiting for five minutes, you can learn a lot about other people and get to be a friend, if even a silent friend.
The very first radiation treatment we saw this man... his face is terribly disfigured by tumors. He has had surgery and part of his jaw is missing, his lower face is caved in, he can not talk at all and he also has a tracheostomy. When I saw him I was dismayed... Papa's cancer was still new and I knew he was thinking... what if something like that happens to me? The man is in a wheelchair and he is always accompanied by his wife/girlriend and a male caregiver. She is a really upbeat person, very skinny, she wears holey jeans and sneakers and sleeveless tee shirts, she has tatts here and there, long curly blond hair that she holds back with a bandana and several beepers and cells clipped to her belt next to the chain to her biker wallet. I know I am presuming but to me she looks "rough." But she so obviously loves this man and you can tell that she sees past his disfigurement, right to the heart of him. She strides around the facility, loud and brash, talking to him but loud enough that everyone must hear her. "Nothing is going to get the best of the man I love," she says. "You are strong and you are going to fight." He shakes his head in agreement, he has no choice. The caregiver is a quiet presence.
I have never seen her in a pensive or depressive mood. I know her husband must be a lot to care for. I have taken care of people with similar problems and it is very difficult work. She may have a caregiver to help her but I am willing to bet that he is only there during the day and probably not on weekends... I could be wrong, but I doubt it. Did I ever tell you I am never wrong? : ) We saw this man every time we went to radiation. One day they changed the time of Papa's treatments and the man had his times changed too and was still with us. Now that we are done with radiation we see him at chemo and gradually I have begun to see a change in him. His tumors have just about disappeared and his face is less red and swollen than it was. He coughs less and he is stronger... I saw him walk himself to the bathroom the other day. He glances our way now and then and I smile. His wife gives me a"thumbs up" and a wave and I return it. We never talk although I am dying with curiosity to know the particulars of his disease and what they are doing about it. I want to know his prognosis too, although I have a feeling she would not let it be anything less than "excellent."
There was another couple that we met at radiation, a man in his 90's and his wife. The man is very hard of hearing and uses a cane. He looks very hale and hearty, not sick at all and she is a hoot! I am guessing that she is quite a bit younger than the man. She wears very stylish clothes and has an up to date hair style. She is very funny and makes everyone laugh. He has lung cancer and is receiving radiation for it but at the time we met them he had not had surgery and it was my impression that he was not going to have any kind of surgery. He does not get chemo either. He sits and smiles, oblivious to what is being said around him, his hands resting atop his cane handle while she rattles away, telling jokes and interrogating everyone around her. I should have asked her about the man in the wheelchair because I bet she knows all about him. This older couple live some distance from us and the radiation is a burden on them. They used to be horse breeders/trainers and live out in the boonies. It takes them an hour drive to and from treatments and he is getting two treatments every day, five days a week. They have no where to go between treatments so they go and sit in a courtyard at the nearby mall. I am sorry to say that we lost track of them some weeks ago when Papa was done with radiation. I wonder how they are doing.
The nurses are great too. One day, maybe the third chemo treatment, grandson Elijah was having some medical problems and daughter took him to the doctor. Papa and I are sitting in chemo when daughter calls and casually tells me that Eli has to have blood work cause his symptoms could be those of leukemia. My heart plunged out of my body, straight to the basement of the facility. I almost threw up right then and there. Daughter knew something was wrong and asked me what it was and I asked her, "don't you know what leukemia is"? She said no, not really, and I reminded her that leukemia is what Borch had died of. (Borch was an old girlfriend of #2 son... a girl we all loved who was bright and funny and smart and full of promise. It was she that coined our family name... "Jeaners." She got leukemia at about 19 years old, went into remission and then died quickly when it returned with a vengeance.)
When we hung up I started crying, deep wrenching sobs and I could not stop. I could not stop, it was almost worse than when Eli was born, a tiny preemie with a head the size of a tennis ball, only 1 pound, 9 ounces. How can I tell you how awful that time was for us, sick with worry about that tiny baby? I knew I could not handle him having leukemia on top of Papa and his illness, I could not imagine how we would work things out logistically. A thousand questions raced through my head... would they send him to St Jude's (St Judes is daughters favorite charity)? Who would take care of Maeva during the times I couldn't? Would Ryan's job let him have the necessary time off? Would Eli's skinny little body be able to fight this off when so many others had not? Would he understand all the tests and the hurt and pain he would have to go through? Would we be able to handle it for his sake? What would Mae-Mae do with out her big brother that she loves so very much, not to mention her beloved Papa? I think I had them both buried right then and there. I was filled with the darkest despair.
Papa's nurse came over, handed me some tissues and sat with us for a while. Papa is very carefully ignoring my antics, watching TV, trying not to lose his composure too. I do not remember what she said to me, it's all a blur. All I can hope is that sometime in my nursing career I was that helpful to some patient and/or their family. She helped me to remember my faith and the knowledge that God does not leave us alone to handle anything, big or small, that may hurt or trouble us... He is always with us, all we have to do is ask for His help. I am so grateful to say that Eli only had an infection and it did not turn out to be leukemia... he's ok.
Thank you.
I am thankful too, for the nurses at chemo and radiation and the other patients we have met. Way back in August, when radiation and chemo started, I quickly saw that the patients develop a camaraderie between themselves and with the care givers. Even if you are only waiting for five minutes, you can learn a lot about other people and get to be a friend, if even a silent friend.
The very first radiation treatment we saw this man... his face is terribly disfigured by tumors. He has had surgery and part of his jaw is missing, his lower face is caved in, he can not talk at all and he also has a tracheostomy. When I saw him I was dismayed... Papa's cancer was still new and I knew he was thinking... what if something like that happens to me? The man is in a wheelchair and he is always accompanied by his wife/girlriend and a male caregiver. She is a really upbeat person, very skinny, she wears holey jeans and sneakers and sleeveless tee shirts, she has tatts here and there, long curly blond hair that she holds back with a bandana and several beepers and cells clipped to her belt next to the chain to her biker wallet. I know I am presuming but to me she looks "rough." But she so obviously loves this man and you can tell that she sees past his disfigurement, right to the heart of him. She strides around the facility, loud and brash, talking to him but loud enough that everyone must hear her. "Nothing is going to get the best of the man I love," she says. "You are strong and you are going to fight." He shakes his head in agreement, he has no choice. The caregiver is a quiet presence.
I have never seen her in a pensive or depressive mood. I know her husband must be a lot to care for. I have taken care of people with similar problems and it is very difficult work. She may have a caregiver to help her but I am willing to bet that he is only there during the day and probably not on weekends... I could be wrong, but I doubt it. Did I ever tell you I am never wrong? : ) We saw this man every time we went to radiation. One day they changed the time of Papa's treatments and the man had his times changed too and was still with us. Now that we are done with radiation we see him at chemo and gradually I have begun to see a change in him. His tumors have just about disappeared and his face is less red and swollen than it was. He coughs less and he is stronger... I saw him walk himself to the bathroom the other day. He glances our way now and then and I smile. His wife gives me a"thumbs up" and a wave and I return it. We never talk although I am dying with curiosity to know the particulars of his disease and what they are doing about it. I want to know his prognosis too, although I have a feeling she would not let it be anything less than "excellent."
There was another couple that we met at radiation, a man in his 90's and his wife. The man is very hard of hearing and uses a cane. He looks very hale and hearty, not sick at all and she is a hoot! I am guessing that she is quite a bit younger than the man. She wears very stylish clothes and has an up to date hair style. She is very funny and makes everyone laugh. He has lung cancer and is receiving radiation for it but at the time we met them he had not had surgery and it was my impression that he was not going to have any kind of surgery. He does not get chemo either. He sits and smiles, oblivious to what is being said around him, his hands resting atop his cane handle while she rattles away, telling jokes and interrogating everyone around her. I should have asked her about the man in the wheelchair because I bet she knows all about him. This older couple live some distance from us and the radiation is a burden on them. They used to be horse breeders/trainers and live out in the boonies. It takes them an hour drive to and from treatments and he is getting two treatments every day, five days a week. They have no where to go between treatments so they go and sit in a courtyard at the nearby mall. I am sorry to say that we lost track of them some weeks ago when Papa was done with radiation. I wonder how they are doing.
The nurses are great too. One day, maybe the third chemo treatment, grandson Elijah was having some medical problems and daughter took him to the doctor. Papa and I are sitting in chemo when daughter calls and casually tells me that Eli has to have blood work cause his symptoms could be those of leukemia. My heart plunged out of my body, straight to the basement of the facility. I almost threw up right then and there. Daughter knew something was wrong and asked me what it was and I asked her, "don't you know what leukemia is"? She said no, not really, and I reminded her that leukemia is what Borch had died of. (Borch was an old girlfriend of #2 son... a girl we all loved who was bright and funny and smart and full of promise. It was she that coined our family name... "Jeaners." She got leukemia at about 19 years old, went into remission and then died quickly when it returned with a vengeance.)
When we hung up I started crying, deep wrenching sobs and I could not stop. I could not stop, it was almost worse than when Eli was born, a tiny preemie with a head the size of a tennis ball, only 1 pound, 9 ounces. How can I tell you how awful that time was for us, sick with worry about that tiny baby? I knew I could not handle him having leukemia on top of Papa and his illness, I could not imagine how we would work things out logistically. A thousand questions raced through my head... would they send him to St Jude's (St Judes is daughters favorite charity)? Who would take care of Maeva during the times I couldn't? Would Ryan's job let him have the necessary time off? Would Eli's skinny little body be able to fight this off when so many others had not? Would he understand all the tests and the hurt and pain he would have to go through? Would we be able to handle it for his sake? What would Mae-Mae do with out her big brother that she loves so very much, not to mention her beloved Papa? I think I had them both buried right then and there. I was filled with the darkest despair.
Papa's nurse came over, handed me some tissues and sat with us for a while. Papa is very carefully ignoring my antics, watching TV, trying not to lose his composure too. I do not remember what she said to me, it's all a blur. All I can hope is that sometime in my nursing career I was that helpful to some patient and/or their family. She helped me to remember my faith and the knowledge that God does not leave us alone to handle anything, big or small, that may hurt or trouble us... He is always with us, all we have to do is ask for His help. I am so grateful to say that Eli only had an infection and it did not turn out to be leukemia... he's ok.
Thank you.
Tuesday, November 10, 2009
Did we even have summer?
Papa began chemo and radiation the first week of August, in fact, his first chemo was on his birthday. The nurses gave him a coffee cup with a bow tied to the handle, filled with Hershey Miniatures... I think they have a cupboard stocked with them. I always thought that it was chemo that was the worst but in Papa's case I am wrong. It took about two weeks of radiation treatments before the effects really showed up. For him it was the fatigue that bothered him the most, that and the unrelenting nausea. The doctor ordered Compazine for mild nausea and Zofran for the more severe nausea. I make sure we never run out of those meds.
Our days were fashioned around the packing and moving-in of the kids, me watching the grands and Papa's treatments. Radiation took very little time actually... only 12 minutes for the treatment, but sometimes we had to wait to get in for his appointment. Then too, just the fact of having to GO, of working it in to our schedule, put a crimp on the day. Radiation was every day, Monday through Friday. It becomes a drag very quickly. Chemo was every Wednesday, for at least an hour and a half. The staff at both places was great and at chemo they have personal TV's for us to watch and snacks and those little diversions help.
At the end of August I made two important steps, tasks that I had been dreading because a negative outcome in either could mean disaster for us. First I went to see the IRS. The very words "IRS" strike fear in the hearts of most people... myself amoung them. We had gotten in debt to them so quickly years ago and I never believed we would ever be able to get them paid off. We lost two deductions at the same time and then my working added to our tax liability. Another factor was Papa's job and the per diem pay he received. He was not able to use many of the deductions for truckers. I was hoping that I would be able to put a hold on our arranged payments till Papa started receiving his disability. I have to say the agent was very helpful and sympathetic. I am boo-hooing like a waterfall, about to scream because of the tension I am under and she hands me tissues and basically said..."there there." Our account was put on hold for as long as we need it and she said that we can make a compromise settlement if we can come up with a few hundred dollars to offer the IRS.
A few hundred to erase several thousand? I will find it somewhere, even if I have to get it from my kids.
The next day I finally went to the Department of Human Services... welfare, and applied for medicaid for Papa. Our bank account was now low enough that we could qualify for at least some help. The office was packed to the walls, standing room only. I expected to be there all day. I filled out my papers, handed them in and about 45 minutes later a woman called my name. When I went to see her we began conversing at the side of the room, and she proceeded to tell me what documents she needed me to bring to my case worker. I am embarrassed to say that I started crying right there in the waiting room in front of all those people. In my defense I have to tell you, I cry very easily, I am a big sap. I cry at favorite hymns in church, Christmas Eve service, I cry looking at family photo albums... I cry when holding my grand babies, at their profound beauty and purity. I cry at movies and my kids laugh and take bets at which point my water-works will start. They watch me rather than the movie.
The DHS woman took pity on me and showed me to her office where I apologized and explained our situation to her... that we had very little income and our insurance was coming to an end. My husband needed months more of chemo and many more radiation treatments. She quickly glanced through my forms and told me not to worry. She said that she was a supervisor and while she had only a very small case load herself, she was going to personally handle Papa's case. She said that the paper work was only a formality and she could tell me that his case would be approved for full medicaid. I left her office feeling better than I had since this ordeal had begun. I knew that my husband would not be turned away because we could not pay. I did not have to worry that I might have to sell our house to pay the bills. There actually was help out there for us. I think that night I finally was able to sleep, the sleep of the blessed, I felt that we would be ok, that now we would be able to get through this mess.
All this time of course, the Healthcare debate is raging around us. As much as I know the outcome will affect us, I have not been able to follow this as I should. I have no idea what is going on around me. I watch the news and read the paper but nothing is absorbing. I found that the days were flying by at an alarming rate. My mother-in-law used to say (she is long dead) that the older one gets, the faster time goes by. This is certainly true. I remember at age 8 the summers were forever and full of endless possibilities. But this summer was like the blink of a fire fly... it drags a bit and leaves a shadow of it's light behind. We never did have a real "Michigan" summer. No scorching hot weather, so muggy that it makes it hard to breathe. The cicadas were hardly even heard this year.
Soon Labor Day was here and my son Ben hosted a BBQ at his home, ostensibly for friends and family, but it was really for Papa... to give him a chance to see most of his kids, to enjoy a bon fire, good food, good friends, good fun. We had a lovely time and he was able to eat a hot dog and some baked beans and some grilled chicken. Of course he ate too much... an old and bad habit. In times past Papa's stomach could keep up with his eyes but not anymore. If he over eats he pays dearly with pain and nausea and general someone-please-put-an-end-to-my-miseryness
Our days were fashioned around the packing and moving-in of the kids, me watching the grands and Papa's treatments. Radiation took very little time actually... only 12 minutes for the treatment, but sometimes we had to wait to get in for his appointment. Then too, just the fact of having to GO, of working it in to our schedule, put a crimp on the day. Radiation was every day, Monday through Friday. It becomes a drag very quickly. Chemo was every Wednesday, for at least an hour and a half. The staff at both places was great and at chemo they have personal TV's for us to watch and snacks and those little diversions help.
At the end of August I made two important steps, tasks that I had been dreading because a negative outcome in either could mean disaster for us. First I went to see the IRS. The very words "IRS" strike fear in the hearts of most people... myself amoung them. We had gotten in debt to them so quickly years ago and I never believed we would ever be able to get them paid off. We lost two deductions at the same time and then my working added to our tax liability. Another factor was Papa's job and the per diem pay he received. He was not able to use many of the deductions for truckers. I was hoping that I would be able to put a hold on our arranged payments till Papa started receiving his disability. I have to say the agent was very helpful and sympathetic. I am boo-hooing like a waterfall, about to scream because of the tension I am under and she hands me tissues and basically said..."there there." Our account was put on hold for as long as we need it and she said that we can make a compromise settlement if we can come up with a few hundred dollars to offer the IRS.
A few hundred to erase several thousand? I will find it somewhere, even if I have to get it from my kids.
The next day I finally went to the Department of Human Services... welfare, and applied for medicaid for Papa. Our bank account was now low enough that we could qualify for at least some help. The office was packed to the walls, standing room only. I expected to be there all day. I filled out my papers, handed them in and about 45 minutes later a woman called my name. When I went to see her we began conversing at the side of the room, and she proceeded to tell me what documents she needed me to bring to my case worker. I am embarrassed to say that I started crying right there in the waiting room in front of all those people. In my defense I have to tell you, I cry very easily, I am a big sap. I cry at favorite hymns in church, Christmas Eve service, I cry looking at family photo albums... I cry when holding my grand babies, at their profound beauty and purity. I cry at movies and my kids laugh and take bets at which point my water-works will start. They watch me rather than the movie.
The DHS woman took pity on me and showed me to her office where I apologized and explained our situation to her... that we had very little income and our insurance was coming to an end. My husband needed months more of chemo and many more radiation treatments. She quickly glanced through my forms and told me not to worry. She said that she was a supervisor and while she had only a very small case load herself, she was going to personally handle Papa's case. She said that the paper work was only a formality and she could tell me that his case would be approved for full medicaid. I left her office feeling better than I had since this ordeal had begun. I knew that my husband would not be turned away because we could not pay. I did not have to worry that I might have to sell our house to pay the bills. There actually was help out there for us. I think that night I finally was able to sleep, the sleep of the blessed, I felt that we would be ok, that now we would be able to get through this mess.
All this time of course, the Healthcare debate is raging around us. As much as I know the outcome will affect us, I have not been able to follow this as I should. I have no idea what is going on around me. I watch the news and read the paper but nothing is absorbing. I found that the days were flying by at an alarming rate. My mother-in-law used to say (she is long dead) that the older one gets, the faster time goes by. This is certainly true. I remember at age 8 the summers were forever and full of endless possibilities. But this summer was like the blink of a fire fly... it drags a bit and leaves a shadow of it's light behind. We never did have a real "Michigan" summer. No scorching hot weather, so muggy that it makes it hard to breathe. The cicadas were hardly even heard this year.
Soon Labor Day was here and my son Ben hosted a BBQ at his home, ostensibly for friends and family, but it was really for Papa... to give him a chance to see most of his kids, to enjoy a bon fire, good food, good friends, good fun. We had a lovely time and he was able to eat a hot dog and some baked beans and some grilled chicken. Of course he ate too much... an old and bad habit. In times past Papa's stomach could keep up with his eyes but not anymore. If he over eats he pays dearly with pain and nausea and general someone-please-put-an-end-to-my-miseryness
Thursday, October 29, 2009
Second Consequence
The first thing Melanie (our youngest daughter) said when she learned of her fathers disease... we'll move in with you to help with the bills. We had talked of this possibility on and off over the years. Mel is married with two very young children. Their home was in a bad neighborhood which was getting worse right along with the Michigan economy. Her husband has a job that provides a nice living for them. The idea was that they would get out of the bad neighborhood and we would have help with our bills. We would not have to worry about losing our place to live and in the eventuality that Papa should not beat this disease, I would not have to worry about where I would go. They would sell their house as soon as they could and this one would become theirs some time in the near future.
This is all easier said than done. Jean's were the first people to live in this house. Papa's family has been here since 1959 but it is a very small house. This didn't matter so much when there were only three or four people to consider but with Mel et all, there are four adults, one of them very sick, and two little ones. Some years ago papa and I had an addition built, a family room, and there was a bedroom of sorts in the basement. We had to consolidate two families' belongings, finish the bedroom in the basement, put in another bedroom and put in an egress window. We also had to put in a gas line for the dryer in the basement as my brother in law had turned one upstairs bedroom into a laundry room years ago so he would not have to negotiate the basement steps. That room was being turned back into a bedroom for Papa. We also had to do electrical work for the new bedroom and we wanted to put in a second bathroom in the basement.
We are very fortunate: we have friends who have gone above and beyond to help us. First of all, our neighbor, an all around handyman, volunteered to build the new bedroom free of charge. We paid for the lumber, he built the room. The electricity was run by an electrician friend for cost of parts. Another friend put in the gas line for the dryer. The guy who did the bedroom put us in touch with a contractor who ended up putting in the egress window for 1/3 of what he normally charges. That saved us a lot of money. Daughter and her husband paid for some of the work, Papa and I paid for some. And a friend of our son's gave us the use of a storage facility for as long as we need it... believe me, with all our accumulated junk we need that storage unit.
Work began just after the camping trip and while it seemed to drag, it actually progressed quite rapidly. Daughter and son in law were busy packing up their house while I was trying to get rid of stuff here. I also had baby duty much of the time so Daughter could work unhindered and she and oldest daughter did the majority of my packing for me. But still, this was very difficult for me. My grand daughter was only 15 months old at the time and Lord have Mercy!! that child is a handful. She is not a baby to be put in a highchair or play pen with toys, oh no! She wants your constant attention. Add to the mix that I am getting older and I have a knee problem and she was really just getting the hang of walking and wanted to try climbing and she is very curious... that child ran me ragged and it hasn't stopped yet. A 15 month old will cure your insomnia problem!
These were very frustrating weeks. Taking care of Papa and the baby and her big brother was making a wreck out of me. Then the first week of August Papa began his treatments. He was scheduled for radiation five days a week for five weeks, with three extra treatments. He also was to have 1/2 strength chemo every Wednesday for the duration of the radiation. After he was done he would have three weeks rest and then begin chemo at full strength... once a week for three weeks, the fourth week off (that is called a cycle) for six times, or six months. Right now he has completed one cycle. Going for the treatments was a very tiring grind. We had to plan every day around them but sometimes the peace and quiet of the chemo room was the only peace and quiet we would get for a while. We are fortunate that the facility Papa gets his treatments at is only ten minutes from home. We have met people who have had to have radiation twice a day, every day and live an hour away with no place to rest between times. How hard that would be.
Soon after he got out of the hospital in June, I went and applied for Social Security Disability for him. While I dreaded this job, it actually went very smoothly and quickly. I was contacted about two days after turning in his application and had a phone interview a week later. Papa had to give his permission for them to interview me instead of him as he felt too sick to do it. He was approved immediately... I was astonished. The interviewer said that the answers to his questions were sending up all kinds of "red flags," and he felt there would be no delay at all. Sure enough we got an acceptance letter the next week that his disability payments would begin in December. That left us with five months with only my disability as income... OY! But at least we knew it would be coming and with the kids here, we would be able to make it through.
So... end of August; work on house is almost done, the storage unit is filled to the brim, the washer and dryer are moved to the basement, the egress window is in, Baby is in her new bedroom, Papa is in his new bedroom, I am in my room with my computer desk and ten huge Rubbermaid tubs filled to overflowing with sewing and quilting fabric, Brother is in his new bedroom and ready to start classes at his new school, Papa's disability is in the works, we have no more money for insurance but we did manage in there somewhere to pay for one more month, taking us to roughly the end of August. We had to forget about the second bathroom as we ran out of money. Hopefully, soon as it is sorely needed.
Our home is often chaos. Daughter and family brought their two dogs with them and we have one. They are all big. They are all barky. They all drive me insane. Baby Mae lugs out all her toys into the middle of the living room, several times a day. My refrigerator is covered with so many alphabet magnets that you can not see the color beneath and if there are more than two of us adults in the kitchen, it's like watching "Dancing With The Stars," we have to waltz to move around that tiny room. Brother Eli is often very noisy as only a seven year old can be, especially one with mild ADHD. In fact the noise level here is terrible, daughter can be raucous too, Holy Cow! I am an old third shifter and I am not used to all this noise. Add to the fracas that Papa is by now very sick, he feels like shit warmed over. The radiation treatments are taking their toll. He is very tired, some days he sleeps 22 hours and still feels fatigued. He is always nauseated and his weight is dropping at an alarming rate.
But chaotic though it may be, I love having them here. Mel and her hubby make me laugh, Baby and Brother are a joy to be around. Mae loves her grandma and I love getting up with her in the morning (I only do it sometimes, I don't want that to be a routine) and getting her breakfast. I love reading "Ruby and Max" for seventy five times in one day. I have someone to share grocery shopping with and someone who actually likes to play Scrabble once in a while, someone I can talk books with. When it gets too loud I escape to my bedroom and close the door, although sometimes I have to ignore Mae if she sees me sneaking off. She does not approve of my closed door.
This is all easier said than done. Jean's were the first people to live in this house. Papa's family has been here since 1959 but it is a very small house. This didn't matter so much when there were only three or four people to consider but with Mel et all, there are four adults, one of them very sick, and two little ones. Some years ago papa and I had an addition built, a family room, and there was a bedroom of sorts in the basement. We had to consolidate two families' belongings, finish the bedroom in the basement, put in another bedroom and put in an egress window. We also had to put in a gas line for the dryer in the basement as my brother in law had turned one upstairs bedroom into a laundry room years ago so he would not have to negotiate the basement steps. That room was being turned back into a bedroom for Papa. We also had to do electrical work for the new bedroom and we wanted to put in a second bathroom in the basement.
We are very fortunate: we have friends who have gone above and beyond to help us. First of all, our neighbor, an all around handyman, volunteered to build the new bedroom free of charge. We paid for the lumber, he built the room. The electricity was run by an electrician friend for cost of parts. Another friend put in the gas line for the dryer. The guy who did the bedroom put us in touch with a contractor who ended up putting in the egress window for 1/3 of what he normally charges. That saved us a lot of money. Daughter and her husband paid for some of the work, Papa and I paid for some. And a friend of our son's gave us the use of a storage facility for as long as we need it... believe me, with all our accumulated junk we need that storage unit.
Work began just after the camping trip and while it seemed to drag, it actually progressed quite rapidly. Daughter and son in law were busy packing up their house while I was trying to get rid of stuff here. I also had baby duty much of the time so Daughter could work unhindered and she and oldest daughter did the majority of my packing for me. But still, this was very difficult for me. My grand daughter was only 15 months old at the time and Lord have Mercy!! that child is a handful. She is not a baby to be put in a highchair or play pen with toys, oh no! She wants your constant attention. Add to the mix that I am getting older and I have a knee problem and she was really just getting the hang of walking and wanted to try climbing and she is very curious... that child ran me ragged and it hasn't stopped yet. A 15 month old will cure your insomnia problem!
These were very frustrating weeks. Taking care of Papa and the baby and her big brother was making a wreck out of me. Then the first week of August Papa began his treatments. He was scheduled for radiation five days a week for five weeks, with three extra treatments. He also was to have 1/2 strength chemo every Wednesday for the duration of the radiation. After he was done he would have three weeks rest and then begin chemo at full strength... once a week for three weeks, the fourth week off (that is called a cycle) for six times, or six months. Right now he has completed one cycle. Going for the treatments was a very tiring grind. We had to plan every day around them but sometimes the peace and quiet of the chemo room was the only peace and quiet we would get for a while. We are fortunate that the facility Papa gets his treatments at is only ten minutes from home. We have met people who have had to have radiation twice a day, every day and live an hour away with no place to rest between times. How hard that would be.
Soon after he got out of the hospital in June, I went and applied for Social Security Disability for him. While I dreaded this job, it actually went very smoothly and quickly. I was contacted about two days after turning in his application and had a phone interview a week later. Papa had to give his permission for them to interview me instead of him as he felt too sick to do it. He was approved immediately... I was astonished. The interviewer said that the answers to his questions were sending up all kinds of "red flags," and he felt there would be no delay at all. Sure enough we got an acceptance letter the next week that his disability payments would begin in December. That left us with five months with only my disability as income... OY! But at least we knew it would be coming and with the kids here, we would be able to make it through.
So... end of August; work on house is almost done, the storage unit is filled to the brim, the washer and dryer are moved to the basement, the egress window is in, Baby is in her new bedroom, Papa is in his new bedroom, I am in my room with my computer desk and ten huge Rubbermaid tubs filled to overflowing with sewing and quilting fabric, Brother is in his new bedroom and ready to start classes at his new school, Papa's disability is in the works, we have no more money for insurance but we did manage in there somewhere to pay for one more month, taking us to roughly the end of August. We had to forget about the second bathroom as we ran out of money. Hopefully, soon as it is sorely needed.
Our home is often chaos. Daughter and family brought their two dogs with them and we have one. They are all big. They are all barky. They all drive me insane. Baby Mae lugs out all her toys into the middle of the living room, several times a day. My refrigerator is covered with so many alphabet magnets that you can not see the color beneath and if there are more than two of us adults in the kitchen, it's like watching "Dancing With The Stars," we have to waltz to move around that tiny room. Brother Eli is often very noisy as only a seven year old can be, especially one with mild ADHD. In fact the noise level here is terrible, daughter can be raucous too, Holy Cow! I am an old third shifter and I am not used to all this noise. Add to the fracas that Papa is by now very sick, he feels like shit warmed over. The radiation treatments are taking their toll. He is very tired, some days he sleeps 22 hours and still feels fatigued. He is always nauseated and his weight is dropping at an alarming rate.
But chaotic though it may be, I love having them here. Mel and her hubby make me laugh, Baby and Brother are a joy to be around. Mae loves her grandma and I love getting up with her in the morning (I only do it sometimes, I don't want that to be a routine) and getting her breakfast. I love reading "Ruby and Max" for seventy five times in one day. I have someone to share grocery shopping with and someone who actually likes to play Scrabble once in a while, someone I can talk books with. When it gets too loud I escape to my bedroom and close the door, although sometimes I have to ignore Mae if she sees me sneaking off. She does not approve of my closed door.
Sunday, October 25, 2009
Consequences
There are consequences to hearing a diagnoses of cancer. While many aspects of a persons life will stay the same, many will also change. For us there were two very immediate consequences: the first being financial and the second stemming from the first, the reversal of my "empty nest syndrome." Let it be said here that I never had empty nest syndrome in the first place but more about that later.
That last day that Papa came home from work was supposed to be the start of a week of vacation. In much of our country the first week of June is "Blitz" week for semi-truck drivers. The various DOT's are on the lookout for any infraction they can find. Trucks are a cash cow for many municipalities, especially when the economy is bad. They stop trucks and do safety inspections, they inspect log books, they do more random drug testing than usual. This means more waiting and down time for drivers. There is a saying in trucking that if the wheels are not rolling, they ain't making money and remember?.. Papa hates to wait. So he always saved this week for vacation and we were planning a trip to #1 son's place. Instead of vacationing, we had to go doctoring.
What happened, when we were told he had cancer, is that we lost the largest part of our income that very second. First of all, his company does not offer sick pay, not many trucking companies do. They also do not offer short term disability. We could have paid extra for short term disability but it was a substantial chunk of money that we could not afford. Papa had two weeks of vacation pay due him and one week of pay then nothing.
For much of our marriage we have lived on a precipice. Money has always been in short supply, sometimes shorter than others. We lost our home once to foreclosure, long before it was common like today. That was what drove Papa to trucking in the first place. At first he made fairly good money and I was working as a nurse too so we were fairly comfortable. I was even able to stop working for four years to take care of Papa's brother when he was sick and dying from Muscular Dystrophy. Then a few years ago I had to quit nursing because of severe arthritis in my knee, which developed because I broke my knee in that car accident in 1988. Papa had been driving for a company that shipped automotive parts and he worked 80 hours a week driving from here to Wisconsin and back. The hours were grueling for a man in his late 50's and he often got only four hours of sleep a night. Then he quit that company and took a huge cut in pay to drive for a local company. He was home more often, got better sleep, was able to enjoy life a bit more. But gradually we started to lose ground and his pay could not keep up with our economy. I receive Social Security Disability but it only managed to help keep our heads barely above water. We had no credit cards, our only loans were an auto loan, our mortgage and a home equity loan. We had a little bit in an old 401K and took that to pay off the van loan and do repairs on our van and the house and we had a few thousand left... not even six months worth of living money.
When Papa got sick he did not want me to tell his employer what was wrong with him... he was afraid of losing options that in reality were not even there. When he had his heart attack back in '07, he was off work for two months and his employer paid for his medical insurance: he was hoping that would happen again. But I knew I had to be honest with his boss. First of all, our doctor told me that Papa would never be able to work again, even if this cancer does not kill him. I knew the employer could not and would not, pay for his insurance indifinitely.
So this is where we stood in that fourth week of June, when I went to see boss man and told him: Papa has cancer, Papa had to have surgery, will have to have radiation and chemotherapy, Papa may die, we don't know yet but for sure he can not work ever again, we have basically no income, we have no money in the bank to speak of, we have a mortgage and home eq loan, we owe big time to the IRS, we will have no medical insurance unless we get help from you.
Boss guy told me that insurance was paid in full to June 17th. Well crap!!! That was a couple weeks ago already, dammit! He said that if this was a couple years ago, he would pay the premiums for us but because of the economy, he was doing his level best just to keep his trucks on the road for one more week. I knew this to be true, this is Michigan after all and we are on the fast track to oblivion here. But he did say that if I could come up with the money for the premiums, he would pay them and keep us on his company plan. I took the money out of the savings and paid him through the middle of July, so we were covered thru the surgery and post-op visits. I didn't know if this was even legal, still don't know. All I knew is that Papa would have one more month of medical insurance and I would cross any other bridges when I came to them.
Thus began my weeks of nightmare living. Oh my God, I was so scared. I would lay in bed at night and my heart would start to race and I would become short of breath. I began to have panic attacks as the questions raced through my head: Was he going to actually die? Would he be terribly sick and in what way? Would he be in a lot of pain? How was I going to take care of him? What would chemo and radiation do to him? What would happen to our home? Would we lose our place to live again? If yes, where would we go? Where could I go if he died? Could I live with one of my kids... would I want to? How was I going to pay the bills? How could I pay the IRS and the property taxes? Where would I come up with more money forthe next month of insurance and still have a bit to live on?
These questions and more like them were another reason the camping trip was a nightmare for me. I was on the edge and I was having a hard time hiding it. One minute I felt as if I would fly apart, the next I felt like a Slinky toy, an old one that had been played with roughly and was now stretched out and tied in knots as only a Slinky can be. It's hard to cook a damn hotdog over a campfire when you feel like that, and not ram the hotdog fork into your heart. It felt as if there was one there anyway, or at least ground glass.
That last day that Papa came home from work was supposed to be the start of a week of vacation. In much of our country the first week of June is "Blitz" week for semi-truck drivers. The various DOT's are on the lookout for any infraction they can find. Trucks are a cash cow for many municipalities, especially when the economy is bad. They stop trucks and do safety inspections, they inspect log books, they do more random drug testing than usual. This means more waiting and down time for drivers. There is a saying in trucking that if the wheels are not rolling, they ain't making money and remember?.. Papa hates to wait. So he always saved this week for vacation and we were planning a trip to #1 son's place. Instead of vacationing, we had to go doctoring.
What happened, when we were told he had cancer, is that we lost the largest part of our income that very second. First of all, his company does not offer sick pay, not many trucking companies do. They also do not offer short term disability. We could have paid extra for short term disability but it was a substantial chunk of money that we could not afford. Papa had two weeks of vacation pay due him and one week of pay then nothing.
For much of our marriage we have lived on a precipice. Money has always been in short supply, sometimes shorter than others. We lost our home once to foreclosure, long before it was common like today. That was what drove Papa to trucking in the first place. At first he made fairly good money and I was working as a nurse too so we were fairly comfortable. I was even able to stop working for four years to take care of Papa's brother when he was sick and dying from Muscular Dystrophy. Then a few years ago I had to quit nursing because of severe arthritis in my knee, which developed because I broke my knee in that car accident in 1988. Papa had been driving for a company that shipped automotive parts and he worked 80 hours a week driving from here to Wisconsin and back. The hours were grueling for a man in his late 50's and he often got only four hours of sleep a night. Then he quit that company and took a huge cut in pay to drive for a local company. He was home more often, got better sleep, was able to enjoy life a bit more. But gradually we started to lose ground and his pay could not keep up with our economy. I receive Social Security Disability but it only managed to help keep our heads barely above water. We had no credit cards, our only loans were an auto loan, our mortgage and a home equity loan. We had a little bit in an old 401K and took that to pay off the van loan and do repairs on our van and the house and we had a few thousand left... not even six months worth of living money.
When Papa got sick he did not want me to tell his employer what was wrong with him... he was afraid of losing options that in reality were not even there. When he had his heart attack back in '07, he was off work for two months and his employer paid for his medical insurance: he was hoping that would happen again. But I knew I had to be honest with his boss. First of all, our doctor told me that Papa would never be able to work again, even if this cancer does not kill him. I knew the employer could not and would not, pay for his insurance indifinitely.
So this is where we stood in that fourth week of June, when I went to see boss man and told him: Papa has cancer, Papa had to have surgery, will have to have radiation and chemotherapy, Papa may die, we don't know yet but for sure he can not work ever again, we have basically no income, we have no money in the bank to speak of, we have a mortgage and home eq loan, we owe big time to the IRS, we will have no medical insurance unless we get help from you.
Boss guy told me that insurance was paid in full to June 17th. Well crap!!! That was a couple weeks ago already, dammit! He said that if this was a couple years ago, he would pay the premiums for us but because of the economy, he was doing his level best just to keep his trucks on the road for one more week. I knew this to be true, this is Michigan after all and we are on the fast track to oblivion here. But he did say that if I could come up with the money for the premiums, he would pay them and keep us on his company plan. I took the money out of the savings and paid him through the middle of July, so we were covered thru the surgery and post-op visits. I didn't know if this was even legal, still don't know. All I knew is that Papa would have one more month of medical insurance and I would cross any other bridges when I came to them.
Thus began my weeks of nightmare living. Oh my God, I was so scared. I would lay in bed at night and my heart would start to race and I would become short of breath. I began to have panic attacks as the questions raced through my head: Was he going to actually die? Would he be terribly sick and in what way? Would he be in a lot of pain? How was I going to take care of him? What would chemo and radiation do to him? What would happen to our home? Would we lose our place to live again? If yes, where would we go? Where could I go if he died? Could I live with one of my kids... would I want to? How was I going to pay the bills? How could I pay the IRS and the property taxes? Where would I come up with more money forthe next month of insurance and still have a bit to live on?
These questions and more like them were another reason the camping trip was a nightmare for me. I was on the edge and I was having a hard time hiding it. One minute I felt as if I would fly apart, the next I felt like a Slinky toy, an old one that had been played with roughly and was now stretched out and tied in knots as only a Slinky can be. It's hard to cook a damn hotdog over a campfire when you feel like that, and not ram the hotdog fork into your heart. It felt as if there was one there anyway, or at least ground glass.
Sunday, October 18, 2009
The Great Outdoors
I am a camper from way back. My dad's family lived in Pittsburgh, Pa and every summer, for the first two weeks in July, my parents packed up us kids and the station wagon and we headed east to visit them. As close as I can figure we added camping to the summer routine when I was somewhere between 5 and 7 years old. Papa, on the other hand, once owned a tent when he was in his late teens... that was the extent of his camping knowledge and experience. That changed when we got married.
One reason my parents camped was because it was a way to go places and see things less expensively and with anywhere between 3 and 5 kids it was necessary to do things cheaply. Papa and I camped for the same reason but more importantly, because I loved it and soon so did he. We like having campfires at night and cooking over a fire and the smell of bacon frying and fresh coffee brewing in the morning. Pit toilets and mosquitoes... not so much but hey!.. ya gotta take some bad to get to the good.
The kids and I were the ones who always got ready for our trips and the ones who did the majority of the work while camping. For days in advance I would sort and wash and pack all the necessary items and then on the big day I would direct the packing of the camper and van while Papa slept in as long as possible. When everything was ready I would wake him up... all he had to do was hitch up the camper, get in the van and go along for the ride. Of course he would have to screw up the smoothness of my routine by having to triple check the oil and the tire pressure and oh, did I remember to pack the camping axe this time?
Our first trip post-surgery was very different. For one thing, just prior to having the surgery we had gotten the oil changed and had new tires put on the van so Papa didn't have those things to worry about. Daughter and son-in-law and oldest grand daughters helped schlepp all the gear to the camper and van and I packed. All Papa had to do was supervise son-in-law in the hitching-up of the camper, a process I find complicated with the big hitch on our current camper/van.
The first time I saw his incision I was astonished. That sucker spanned his entire abdomen (a considerable expanse) and looked like an up-side-down smiley face. It had to be a good fifteen inches long. He also had three puncture wounds, one from the feeding tube and two from the wound drains. His incision was stapled shut and his belly had a new terrain, bumpy and lumpy where it had once been bump-free... all thanks to the new configuration of the organs within. Before he left the hospital the staples were removed and steri-strips were placed over the incision, but he went home with the drains and feeding tube. It was my job to clean the wound, put a clean dressing on it at least daily, flush the feeding tube daily (the feedings were stopped when he was in the hospital. They left the tube in for a while just in case he could not eat normally and had to resume the feedings, the flushing was to keep the tube patent), empty the wound drains and measure the drainage when they got full, or daily, which ever came first. For those that may not know, wound drains like Papa's are bulb-shaped and connected to a long tube. The tube goes through a puncture wound into the surgical area; it flattens out to a tube with holes in it. You gently squeeze the bulb and it pulls blood and excess fluid out of the wound area, into the bulb of the drain, which you then empty.
Then a week or so before the trip, Papa was turning over in bed and one end of his incision split open, about two inches long. He bled all over the bed, old blackish blood from a huge hematoma that was inside on the right end of the incision. I cleaned and dressed the wound and of course, he refused to go to the doctor or the hospital to have it checked. He maintained that he was not going to let them re-stitch it anyway, or have another surgery, and his appendix incision had healed just fine and it had been a lot bigger so just deal with it wife! A couple days later we had his first post-op surgeon visit and the doctor didn't even blink an eye at the open area. He gave his blessing to the camping trip but even if he hadn't, Papa would still have insisted on going.
Soooo... surgery was June 17th, Papa came home June 25th and we went camping July 8th. We went to one of our favorite campgrounds, two hours from home so that we could get back home quickly if need be. Right from the start he felt like crap. He was weak and nauseated. He usually liked the camper bed but he couldn't get comfortable. He ate too much food inspite of the nausea. Now, my husband in times past, could put away a large amount of food but no more. I told him he had weight-loss surgery without even wanting it. That first night he was so very sick. My daughter and I could hear his stomach making noise from a good distance away. He had that sickie grey color again. He tossed and turned and moaned and groaned. I was waiting to hear him start vomiting... something he had not done at all since the surgery. There was nothing I could do for him, no medications that he had not already taken. And my one year old grand daughter cried at night, loud, piercing, make-grandma-feel terrible cries that we could hear 50 yards away, making grandpa worry and lose sleep.
The next day I told him I wanted to go home and we argued a bit but he refused. He did not say it, but I know he felt that he was near death and wanted this time with as many of our kids as we could manage to have with us and our sons and their families were on the way to the campground. So we both endured. He sometimes refused to take his medications and also would not let me look at his wound. It was bleeding a little and I think he didn't want to give me any more ammunition about going home. His old dressings looked terrible and nasty.
The rest of the weekend was better for him, thank God. We pampered him as much as possible, made him his favorite foods, made sure he ate in small amounts, made sure he got lots of naps, made sure he didn't wait too long to take pain meds. It was grueling. It was the worst camping trip I ever went on. By the time we got home I decided I wanted to sell the camper
One reason my parents camped was because it was a way to go places and see things less expensively and with anywhere between 3 and 5 kids it was necessary to do things cheaply. Papa and I camped for the same reason but more importantly, because I loved it and soon so did he. We like having campfires at night and cooking over a fire and the smell of bacon frying and fresh coffee brewing in the morning. Pit toilets and mosquitoes... not so much but hey!.. ya gotta take some bad to get to the good.
The kids and I were the ones who always got ready for our trips and the ones who did the majority of the work while camping. For days in advance I would sort and wash and pack all the necessary items and then on the big day I would direct the packing of the camper and van while Papa slept in as long as possible. When everything was ready I would wake him up... all he had to do was hitch up the camper, get in the van and go along for the ride. Of course he would have to screw up the smoothness of my routine by having to triple check the oil and the tire pressure and oh, did I remember to pack the camping axe this time?
Our first trip post-surgery was very different. For one thing, just prior to having the surgery we had gotten the oil changed and had new tires put on the van so Papa didn't have those things to worry about. Daughter and son-in-law and oldest grand daughters helped schlepp all the gear to the camper and van and I packed. All Papa had to do was supervise son-in-law in the hitching-up of the camper, a process I find complicated with the big hitch on our current camper/van.
The first time I saw his incision I was astonished. That sucker spanned his entire abdomen (a considerable expanse) and looked like an up-side-down smiley face. It had to be a good fifteen inches long. He also had three puncture wounds, one from the feeding tube and two from the wound drains. His incision was stapled shut and his belly had a new terrain, bumpy and lumpy where it had once been bump-free... all thanks to the new configuration of the organs within. Before he left the hospital the staples were removed and steri-strips were placed over the incision, but he went home with the drains and feeding tube. It was my job to clean the wound, put a clean dressing on it at least daily, flush the feeding tube daily (the feedings were stopped when he was in the hospital. They left the tube in for a while just in case he could not eat normally and had to resume the feedings, the flushing was to keep the tube patent), empty the wound drains and measure the drainage when they got full, or daily, which ever came first. For those that may not know, wound drains like Papa's are bulb-shaped and connected to a long tube. The tube goes through a puncture wound into the surgical area; it flattens out to a tube with holes in it. You gently squeeze the bulb and it pulls blood and excess fluid out of the wound area, into the bulb of the drain, which you then empty.
Then a week or so before the trip, Papa was turning over in bed and one end of his incision split open, about two inches long. He bled all over the bed, old blackish blood from a huge hematoma that was inside on the right end of the incision. I cleaned and dressed the wound and of course, he refused to go to the doctor or the hospital to have it checked. He maintained that he was not going to let them re-stitch it anyway, or have another surgery, and his appendix incision had healed just fine and it had been a lot bigger so just deal with it wife! A couple days later we had his first post-op surgeon visit and the doctor didn't even blink an eye at the open area. He gave his blessing to the camping trip but even if he hadn't, Papa would still have insisted on going.
Soooo... surgery was June 17th, Papa came home June 25th and we went camping July 8th. We went to one of our favorite campgrounds, two hours from home so that we could get back home quickly if need be. Right from the start he felt like crap. He was weak and nauseated. He usually liked the camper bed but he couldn't get comfortable. He ate too much food inspite of the nausea. Now, my husband in times past, could put away a large amount of food but no more. I told him he had weight-loss surgery without even wanting it. That first night he was so very sick. My daughter and I could hear his stomach making noise from a good distance away. He had that sickie grey color again. He tossed and turned and moaned and groaned. I was waiting to hear him start vomiting... something he had not done at all since the surgery. There was nothing I could do for him, no medications that he had not already taken. And my one year old grand daughter cried at night, loud, piercing, make-grandma-feel terrible cries that we could hear 50 yards away, making grandpa worry and lose sleep.
The next day I told him I wanted to go home and we argued a bit but he refused. He did not say it, but I know he felt that he was near death and wanted this time with as many of our kids as we could manage to have with us and our sons and their families were on the way to the campground. So we both endured. He sometimes refused to take his medications and also would not let me look at his wound. It was bleeding a little and I think he didn't want to give me any more ammunition about going home. His old dressings looked terrible and nasty.
The rest of the weekend was better for him, thank God. We pampered him as much as possible, made him his favorite foods, made sure he ate in small amounts, made sure he got lots of naps, made sure he didn't wait too long to take pain meds. It was grueling. It was the worst camping trip I ever went on. By the time we got home I decided I wanted to sell the camper
Tuesday, October 13, 2009
Humans Plan...
Papa was in ICU for six days, first of all because of the severity of his surgery (back in the 60's and 70's the mortality rate for a Whipple was 25%, today it is less than 4% when done in a major medical center) but secondly because of the meds he was on. He was not allowed to eat or drink anything for several days and he had to wait till he could take his cardiac meds orally to go to a surgical floor. It was torture to him to be unable to drink. When he feels sick he wants ice water and he was parched from the surgery, his medications, the oxygen. ICU sucks the moisture out of a person. The doctor did allow him a "few" ice chips and this was Papa's salvation.
As I mentioned before, Papa does not like to wait. It's a good thing men do not have babies because he would never have been able to wait nine months. So... the day he was out of surgery he was already asking when he could go home. Before the surgery his doctor told us to expect a minimum two week stay and that the average for a Whipple is twenty one days. This is because the surgery is so huge that there are usually complications of one kind or another, and the complications for surgery like this are usually life threatening: blood clots, peritonitis, wound infections, to name a few. He was very lucky though as there were no complications what so ever and he came home after only an eight day stay.
All he could talk about was going camping. Before surgery we had been planning to visit our son and his family in Suttons Bay, Michigan and we were unhappy that we had to forget about that. We had also had a family camping trip in the works since February, planned for July and he set that as a goal. He was going to feel well enough to go on that trip. He was determined to make that trip as he felt that it could be his last.
Every family event now is planned as though it might be his last. We have Maeva and Noelle's baptisms coming up, Thanksgiving, Christmas, birthdays to celebrate. Will he be here for them? We don't know but then, I may not be here for them either. Who know's? I could be fomenting a huge cardiac or neurological event as I type. The death of my first husband in a car accident 35 years ago taught me that nothing is sure. Have you ever seen the clever quotations that some church's put on their bulletin board's? We saw one recently that accurately describes how we feel... "Humans plan and God laughs." Every plan has a big "IF" attached to it. I always host Thanksgiving but now it's... IF papa is feeling well enough to have everyone over to our place. Papa wants to attend the baptism's in two weeks... IF he feels well enough to go to church.
In retrospect the camping trip was not a good idea.
As I mentioned before, Papa does not like to wait. It's a good thing men do not have babies because he would never have been able to wait nine months. So... the day he was out of surgery he was already asking when he could go home. Before the surgery his doctor told us to expect a minimum two week stay and that the average for a Whipple is twenty one days. This is because the surgery is so huge that there are usually complications of one kind or another, and the complications for surgery like this are usually life threatening: blood clots, peritonitis, wound infections, to name a few. He was very lucky though as there were no complications what so ever and he came home after only an eight day stay.
All he could talk about was going camping. Before surgery we had been planning to visit our son and his family in Suttons Bay, Michigan and we were unhappy that we had to forget about that. We had also had a family camping trip in the works since February, planned for July and he set that as a goal. He was going to feel well enough to go on that trip. He was determined to make that trip as he felt that it could be his last.
Every family event now is planned as though it might be his last. We have Maeva and Noelle's baptisms coming up, Thanksgiving, Christmas, birthdays to celebrate. Will he be here for them? We don't know but then, I may not be here for them either. Who know's? I could be fomenting a huge cardiac or neurological event as I type. The death of my first husband in a car accident 35 years ago taught me that nothing is sure. Have you ever seen the clever quotations that some church's put on their bulletin board's? We saw one recently that accurately describes how we feel... "Humans plan and God laughs." Every plan has a big "IF" attached to it. I always host Thanksgiving but now it's... IF papa is feeling well enough to have everyone over to our place. Papa wants to attend the baptism's in two weeks... IF he feels well enough to go to church.
In retrospect the camping trip was not a good idea.
Wednesday, October 7, 2009
Papa and pain
Like most men my husband is a big baby. When he is sick with a cold or flu he wants to be waited on hand and foot. He needs a cold cloth for his forehead, he needs his Halls and a blankie and on and on... he's a wuss. But that man can take a tremendous amount of pain.
The first time I saw this was in 1983, just after I got out of nursing school. He got very sick, nausea, vomiting, fever and chills. Then the pain started, nowhere specific, it was all over his body. I had to fight with him for days to get him to the doctor. His argument?? He had no job, I had just graduated and had no job so we had no health insurance. He said it would be better for him to die than to rack up huge medical bills and then die anyway and leave me and the kids behind with the bills. What an idiot!
This was in February. He was a horrid grey/green color and while waiting for the doctor he was ripping his clothes off, pouring with sweat but even after examination he refused to go to the hospital. He did however agree to having blood work done. Later that night, about 11:40 pm, the doctor called and said it was imperative that Papa go to ER. By this time the pain had localized to his lower right abdomen and he was in agony. We didn't live far from the hospital and were there in a few minutes. By 12:15 am they had him in surgery and removed a gangrenous appendix. It burst as they were removing it. His recovery was my first real nursing experience because I got to take care of him at home. He was discharged after three days with a huge gaping wound that was left open so it could drain.
Then there was the car accident in 1988 when his ankle was broken as the floor board was pushed up into the car. That was painful but really minor relatively speaking.
The next biggie was in 2007. As mentioned previously Papa has always been prone to a sickie stomach... heart burn, nausea, gas, that sort of thing. On
St Patrick's Day we attended a surprise birthday party our son had for his wife Sara and later that night, after eating all the party food, Papa felt really crappy. He took the usuals but it just didn't go away... for weeks! He had heart burn all the time and it started getting worse and worse. Then he started having pain in his back, right below his right shoulder blade, it sometimes radiated through to the front. Papa was a semi truck driver and he drove like that for weeks and again, he refused to go to the doctor.
Then one Tuesday night he was on his way to Iowa and got as far as Lansing (two hours from our home) but the pain became so intense that he had to turn around and come home. I wanted to take him to ER but he insisted on waiting to see our family doctor. He thought it was his gall bladder and he did not think it was a real emergency, no matter what I said. I called first thing in the morning but it was the week before Easter and she was on vacation. The office said to go to ER or he could come in and see the doctor covering for our doctor. He would do neither. So the rest of that week, five days, I had to watch that stubborn man grapple with pain. He took every available pain med he could find... vicodin, a stray Tylenol #3 left over from a dental procedure, aspirin by the handful till there was nothing left even in the lint covered bottom of my purse. The pain would come and go but when it was on him it was terrible to see.
Even now I can not believe that he would not just get in the damn van and let me take him to the hospital. Why? Why was he like that? Did he think he couldn't die? Well, maybe, but one reason, the really stupid reason, is because he didn't want to wait. Truck driver have to wait a lot. They wait in heavy traffic, they wait for their trailers to be loaded or emptied and sometimes shippers and receivers let them wait for a very long time and with no good reason... sometimes just because they can. Papa did not want to wait in ER. He was afraid he would have to sit there and sit there and WAIT!
When I finally got him in to see the doc on Monday she agreed that he could be having gall bladder attacks as his symptoms were classic for that. She was going to order the procedure we actually recently followed. Her office was setting up an ultrasound appointment and she mentioned that Papa would also have to have an EKG pre-op. I asked if the EKG could be done in her office to speed things along and she agreed. By this time Papa is grey and he is in pain and he is drenched in sweat and he is nauseated. They give him an injection for the nausea and then another for pain. Two minutes after the EKG she came rushing into the office and said papa was having a heart attack. She called the hospital and told them to expect us. I drove him rather than wait for an ambulance. It took only a few minutes to get him into the cath lab where they put in a stent. He had a 100% blockage but he was so lucky that there was no permanent damage to his heart. That entire month what he had been experiencing was angina, not heart burn or gall bladder attacks. He never did have any of the usual symptoms of a heart attack like mid-sternal chest pain or jaw pain or left arm pain... all his symptoms were on the right and in his back.
So you can see that Papa is no stranger to pain, common sense perhaps, but not to pain. But how does that physical pain compare to the mental pain of imagining all that could be ahead?
The first time I saw this was in 1983, just after I got out of nursing school. He got very sick, nausea, vomiting, fever and chills. Then the pain started, nowhere specific, it was all over his body. I had to fight with him for days to get him to the doctor. His argument?? He had no job, I had just graduated and had no job so we had no health insurance. He said it would be better for him to die than to rack up huge medical bills and then die anyway and leave me and the kids behind with the bills. What an idiot!
This was in February. He was a horrid grey/green color and while waiting for the doctor he was ripping his clothes off, pouring with sweat but even after examination he refused to go to the hospital. He did however agree to having blood work done. Later that night, about 11:40 pm, the doctor called and said it was imperative that Papa go to ER. By this time the pain had localized to his lower right abdomen and he was in agony. We didn't live far from the hospital and were there in a few minutes. By 12:15 am they had him in surgery and removed a gangrenous appendix. It burst as they were removing it. His recovery was my first real nursing experience because I got to take care of him at home. He was discharged after three days with a huge gaping wound that was left open so it could drain.
Then there was the car accident in 1988 when his ankle was broken as the floor board was pushed up into the car. That was painful but really minor relatively speaking.
The next biggie was in 2007. As mentioned previously Papa has always been prone to a sickie stomach... heart burn, nausea, gas, that sort of thing. On
St Patrick's Day we attended a surprise birthday party our son had for his wife Sara and later that night, after eating all the party food, Papa felt really crappy. He took the usuals but it just didn't go away... for weeks! He had heart burn all the time and it started getting worse and worse. Then he started having pain in his back, right below his right shoulder blade, it sometimes radiated through to the front. Papa was a semi truck driver and he drove like that for weeks and again, he refused to go to the doctor.
Then one Tuesday night he was on his way to Iowa and got as far as Lansing (two hours from our home) but the pain became so intense that he had to turn around and come home. I wanted to take him to ER but he insisted on waiting to see our family doctor. He thought it was his gall bladder and he did not think it was a real emergency, no matter what I said. I called first thing in the morning but it was the week before Easter and she was on vacation. The office said to go to ER or he could come in and see the doctor covering for our doctor. He would do neither. So the rest of that week, five days, I had to watch that stubborn man grapple with pain. He took every available pain med he could find... vicodin, a stray Tylenol #3 left over from a dental procedure, aspirin by the handful till there was nothing left even in the lint covered bottom of my purse. The pain would come and go but when it was on him it was terrible to see.
Even now I can not believe that he would not just get in the damn van and let me take him to the hospital. Why? Why was he like that? Did he think he couldn't die? Well, maybe, but one reason, the really stupid reason, is because he didn't want to wait. Truck driver have to wait a lot. They wait in heavy traffic, they wait for their trailers to be loaded or emptied and sometimes shippers and receivers let them wait for a very long time and with no good reason... sometimes just because they can. Papa did not want to wait in ER. He was afraid he would have to sit there and sit there and WAIT!
When I finally got him in to see the doc on Monday she agreed that he could be having gall bladder attacks as his symptoms were classic for that. She was going to order the procedure we actually recently followed. Her office was setting up an ultrasound appointment and she mentioned that Papa would also have to have an EKG pre-op. I asked if the EKG could be done in her office to speed things along and she agreed. By this time Papa is grey and he is in pain and he is drenched in sweat and he is nauseated. They give him an injection for the nausea and then another for pain. Two minutes after the EKG she came rushing into the office and said papa was having a heart attack. She called the hospital and told them to expect us. I drove him rather than wait for an ambulance. It took only a few minutes to get him into the cath lab where they put in a stent. He had a 100% blockage but he was so lucky that there was no permanent damage to his heart. That entire month what he had been experiencing was angina, not heart burn or gall bladder attacks. He never did have any of the usual symptoms of a heart attack like mid-sternal chest pain or jaw pain or left arm pain... all his symptoms were on the right and in his back.
So you can see that Papa is no stranger to pain, common sense perhaps, but not to pain. But how does that physical pain compare to the mental pain of imagining all that could be ahead?
Monday, October 5, 2009
first day or so
It took a long time for him to go through recovery and for them to settle him in his room. I could not believe it when I saw him... there were tubes and hoses running everywhere.
He had three IV's, an art line (goes into an artery to measure continuous blood pressure. Can also be used to draw blood for labs and blood gases), a catheter, two wound drains, a J-tube (a tube placed through the abdomen directly into the small intestine, bypassing the stomach. This gives the stomach time to heal, he got feedings through this, a substance like baby formula or Ensure), oxygen by nasal cannula, a tube down his nose into the stomach to suction out stomach contents (again to let the stomach heal and help prevent nausea and vomiting), a cardiac monitor with wires everywhere, alternating pressure boots to help prevent blood clots from inactivity and a surgical dressing that covered his entire abdomen... whew!!
He was getting several different antibiotics, meds for blood pressure, fluids, morphine through a patient controlled pain pump. After a couple days they removed an IV or two but added a PICC line and TPN, which is nutrition that goes directly into the vein, different from a regular IV though. It was like a well choreographed dance to change his position in bed and the first time he got out of bed, it took over 1/2 hour to manage all his tubes and lines.
He was one sick puppy but I have to say, his color looked so much better with the jaundice gone. He was in a lot of pain and it took some doing to get it under control. First they had to find the med that worked best for him and then we had to get him to use the pain pump routinely. People are so afraid they will become addicted to pain meds, and some times they do but the doctors are very careful about the dosage and the pain pumps, which are controlled by the patient, will not let you give yourself more than the prescribed dose. More about Papa and pain later.
I went home for a short time to change clothes and let the pooch out and then stayed the night with Papa. By this time I was exhausted and that fatigue has not left me yet. I could sleep at the drop of a hat. I was afraid to miss the doctors, they always come in first thing in the morning. I wanted to hear results and news from the horses mouth. And as drugged up as Papa was, I knew whatever he said would not be reliable.
What they had to say was that the cancer was in stage II, not III as they initially thought and this was a good thing, very good. Papa would need six weeks recuperation time and then would begin radiation and half-dose chemotherapy. After the radiation was completed, he would have a short rest period and then begin chemotherapy at the full dose. He would get chemo for about six months. We are at the point where he starts again right now.
He had three IV's, an art line (goes into an artery to measure continuous blood pressure. Can also be used to draw blood for labs and blood gases), a catheter, two wound drains, a J-tube (a tube placed through the abdomen directly into the small intestine, bypassing the stomach. This gives the stomach time to heal, he got feedings through this, a substance like baby formula or Ensure), oxygen by nasal cannula, a tube down his nose into the stomach to suction out stomach contents (again to let the stomach heal and help prevent nausea and vomiting), a cardiac monitor with wires everywhere, alternating pressure boots to help prevent blood clots from inactivity and a surgical dressing that covered his entire abdomen... whew!!
He was getting several different antibiotics, meds for blood pressure, fluids, morphine through a patient controlled pain pump. After a couple days they removed an IV or two but added a PICC line and TPN, which is nutrition that goes directly into the vein, different from a regular IV though. It was like a well choreographed dance to change his position in bed and the first time he got out of bed, it took over 1/2 hour to manage all his tubes and lines.
He was one sick puppy but I have to say, his color looked so much better with the jaundice gone. He was in a lot of pain and it took some doing to get it under control. First they had to find the med that worked best for him and then we had to get him to use the pain pump routinely. People are so afraid they will become addicted to pain meds, and some times they do but the doctors are very careful about the dosage and the pain pumps, which are controlled by the patient, will not let you give yourself more than the prescribed dose. More about Papa and pain later.
I went home for a short time to change clothes and let the pooch out and then stayed the night with Papa. By this time I was exhausted and that fatigue has not left me yet. I could sleep at the drop of a hat. I was afraid to miss the doctors, they always come in first thing in the morning. I wanted to hear results and news from the horses mouth. And as drugged up as Papa was, I knew whatever he said would not be reliable.
What they had to say was that the cancer was in stage II, not III as they initially thought and this was a good thing, very good. Papa would need six weeks recuperation time and then would begin radiation and half-dose chemotherapy. After the radiation was completed, he would have a short rest period and then begin chemotherapy at the full dose. He would get chemo for about six months. We are at the point where he starts again right now.
Friday, October 2, 2009
the big day
You have to understand here... prior to surgery day Papa had been feeling pretty good. No real pain to speak of, some mild nausea from time to time, some occasional diarrhea. But then there was the urine the color of strong tea (oh yeah, did I mention that?) and skin the color of an over ripe banana peel.
How were we feeling at this point? I guess scared would be the best answer. Papa was very stoic. There was no weeping or gnashing of teeth or rending of clothing. We knew he had to go through this. What choice did he have? None, none at all. It was have the surgery and have a chance at life, or go home and sit on the couch and wait for death.
I, on the other hand, am a basket case inside. Even though I no longer work, I am still a nurse and I know too much. I am scared for my husband. I try very hard to keep this fear to myself because I know if I lose it, he will too and that would not be good for our kids and grandkids, it would not be good for him to go into surgery like that either, or for recovery from surgery. "They" say attitude has a lot to do with recovery and "they" are correct.
We have been together for a long time now and during our marriage, every time he had an ache or a twinge Papa thought it was cancer. He always had a "nervous" stomach too. I wish I had the money now for every bottle of Mylanta or Pepto Bismol I have bought over the years. He has a strong family history of cancer, especially digestive tract cancer but we always thought if he got cancer, it would be lung cancer. He was exposed to asbestos long ago in an auto foundry and has asbestosis and he was a heavy smoker in his 20's before he quit. That heart attack in 2007 was a biggie too... I sometimes thought another of those would take him one day.
They are getting Papa ready, taking his history for the umpteenth time, going over his meds again, blood pressure, blood draws, type and cross match in case he needs a transfusion... the endless rituals of pre-surgery admissions. I can see he is getting nervous, he just wants to get it over and done with. We were still waiting for the final results of the ERCP biopsy, thinking, praying, maybe Papa would only have to have his gall bladder removed after all. The surgeon had told us earlier, "a duck is a duck" meaning if it was cancer in the preliminary biopsy, it would still be cancer when he looked at it out in the open of the operating room. Of course he was right. We had been given the choice to go to University of Michigan Hospital, or a big one in Detroit but that would have put a burden on our entire family so we put our trust in this young man and in our local hospitals. We trusted that he would not do anything unnecessary but also that he would do everything necessary.
I was told at least seven hours for the surgery. My sister, my nephew and his fiancee, my daughter and her kids and my oldest grand daughter all took turns waiting with me down in the lobby with all the other families. God, that wait is unbearable. Doctors come and go, families cry or rejoice, cell phones ring, food and coffee are brought in and left to go cold by nervous loved ones and there is nothing you can do to speed things up. I was afraid to leave and go to the bathroom, for fear that news would come while I was away. Half way through they let us know that the doctor was proceeding with the Whipple procedure and after several more hours finally the doctor made his appearance... it was pancreatic cancer, right at the head of the pancreas. The surgery was huge, they removed the gall bladder, 1/3 to 1/2 of his stomach, about 1/2 of the pancreas, part of the small intestine and he thought the cancer was stage III already, not a good sign.
How were we feeling at this point? I guess scared would be the best answer. Papa was very stoic. There was no weeping or gnashing of teeth or rending of clothing. We knew he had to go through this. What choice did he have? None, none at all. It was have the surgery and have a chance at life, or go home and sit on the couch and wait for death.
I, on the other hand, am a basket case inside. Even though I no longer work, I am still a nurse and I know too much. I am scared for my husband. I try very hard to keep this fear to myself because I know if I lose it, he will too and that would not be good for our kids and grandkids, it would not be good for him to go into surgery like that either, or for recovery from surgery. "They" say attitude has a lot to do with recovery and "they" are correct.
We have been together for a long time now and during our marriage, every time he had an ache or a twinge Papa thought it was cancer. He always had a "nervous" stomach too. I wish I had the money now for every bottle of Mylanta or Pepto Bismol I have bought over the years. He has a strong family history of cancer, especially digestive tract cancer but we always thought if he got cancer, it would be lung cancer. He was exposed to asbestos long ago in an auto foundry and has asbestosis and he was a heavy smoker in his 20's before he quit. That heart attack in 2007 was a biggie too... I sometimes thought another of those would take him one day.
They are getting Papa ready, taking his history for the umpteenth time, going over his meds again, blood pressure, blood draws, type and cross match in case he needs a transfusion... the endless rituals of pre-surgery admissions. I can see he is getting nervous, he just wants to get it over and done with. We were still waiting for the final results of the ERCP biopsy, thinking, praying, maybe Papa would only have to have his gall bladder removed after all. The surgeon had told us earlier, "a duck is a duck" meaning if it was cancer in the preliminary biopsy, it would still be cancer when he looked at it out in the open of the operating room. Of course he was right. We had been given the choice to go to University of Michigan Hospital, or a big one in Detroit but that would have put a burden on our entire family so we put our trust in this young man and in our local hospitals. We trusted that he would not do anything unnecessary but also that he would do everything necessary.
I was told at least seven hours for the surgery. My sister, my nephew and his fiancee, my daughter and her kids and my oldest grand daughter all took turns waiting with me down in the lobby with all the other families. God, that wait is unbearable. Doctors come and go, families cry or rejoice, cell phones ring, food and coffee are brought in and left to go cold by nervous loved ones and there is nothing you can do to speed things up. I was afraid to leave and go to the bathroom, for fear that news would come while I was away. Half way through they let us know that the doctor was proceeding with the Whipple procedure and after several more hours finally the doctor made his appearance... it was pancreatic cancer, right at the head of the pancreas. The surgery was huge, they removed the gall bladder, 1/3 to 1/2 of his stomach, about 1/2 of the pancreas, part of the small intestine and he thought the cancer was stage III already, not a good sign.
Thursday, October 1, 2009
it starts
It was four months ago today that everything changed. Papa came home from four days on the road and it was immediately apparant to me that he was jaundiced. No one looks the color of a canary naturally and jaundice is never good.
Just about the time of the family reunion, August 2008, he went on a diet. Now this was not unusual because he was forever trying to lose weight. For once it was working. He lifted weights and walked when he was home from the road but that became difficult because he started having sciatic pain. Still, slowly the weight came off. It really became noticable after Christmas and just about then he started having occasional diarrhea. He said it was truck stop food or because his body was getting rid of fat from him dieting. Then once or twice he said something about his stool being clay color. Hmmm... I really should have picked up on that, being a nurse and all but I missed it. He was always so tired too. He wanted to work in the woodshop on weekends but he could never manage to get out there unless Eric and/or Ben were there to encourage him.
For me the first biggest thing was the bruising. Papa is on Coumadin because of his atrial fib problem and about March he started having abnormal bruising. He would be surprised when I pointed out a new bruise and say that he had done nothing to cause it, no bumps while winding up the landing gear, no knocks to the calf or hip area. His blood work was not really that out of whack either, not for bruises the size he was sporting. We would just adjust his Coumadin however the doctor said to and have his PT checked when they said and then re-adjust again. Well, now we know he was not metabolizing the Coumadin properly because of a blockage.
When he came home jaundiced it was a Saturday. Monday I had him in to the doctor ASAP and she thought this time it might really be gall bladder problems because of the symptoms (more about this later) but I do remember her mentioning cancer somewhat as an afterthought. Her office arranged blood work and an ultrasound. The ultrasound was done the next day and did show a gall bladder full of sludge. I was relieved and worried at the same time. When I had my gall bladder out I was off work for six weeks and I was worried about finances as Papa's work did not provide short term disability or sick pay. Six weeks without a pay check is a damn long time. But it seemed the lesser of any problems that it could possibily have been.
After she got the results of the ultrasound the doctor arranged for Papa to see a gastroenterologist. He said it appeared from the ultrasound that a gall stone was blocking the common bile duct. He ordered an MRI and after that decided to do an ERCP, an endoscopy procedure where an endoscope is passed through the mouth to the stomach. He felt that he might be able to retreive the stone that way and if not, then Papa would have to have his gall bladder removed the conventional way. I remember talking with Papa and saying... at least you don't have pancreatic cancer, that is almost always a death sentence. We talked about Michael Landon, Patrick Swayze, the woman in the chat room... all dead or dying from pancreatic cancer.
The ERCP was Friday, June 12th. The doctor did not find a gall stone, he found a tumor. That is what was blocking the bile duct. He put a stent in place to hold the duct open and did a biopsy. Then he sent a surgeon to see Papa.
Of course by this time Papa is frantic to get out of the hospital but they made him stay to get surgical clearance from his cardiac docs. I practically had to chain him to the bed. He did not feel sick and he wanted to be home with his family. The surgeon told us Papa needed a Whipple procedure and it needed to be done ASAP. I remembered that from nursing school although I had never taken care of anyone who had one. I just remembered that it was said "they take everything." He drew pictures of the procedure all over the bed sheet, outlining what he planned to do. I could see Papa turning green under his already yellow tinged skin. The surgeon said that he would look by scope first and do a more in depth biopsy and would not do the Whipple unless it was necessary. Papa finally got to come home for a day or so before going back in on Wednesday the 17th.
Just about the time of the family reunion, August 2008, he went on a diet. Now this was not unusual because he was forever trying to lose weight. For once it was working. He lifted weights and walked when he was home from the road but that became difficult because he started having sciatic pain. Still, slowly the weight came off. It really became noticable after Christmas and just about then he started having occasional diarrhea. He said it was truck stop food or because his body was getting rid of fat from him dieting. Then once or twice he said something about his stool being clay color. Hmmm... I really should have picked up on that, being a nurse and all but I missed it. He was always so tired too. He wanted to work in the woodshop on weekends but he could never manage to get out there unless Eric and/or Ben were there to encourage him.
For me the first biggest thing was the bruising. Papa is on Coumadin because of his atrial fib problem and about March he started having abnormal bruising. He would be surprised when I pointed out a new bruise and say that he had done nothing to cause it, no bumps while winding up the landing gear, no knocks to the calf or hip area. His blood work was not really that out of whack either, not for bruises the size he was sporting. We would just adjust his Coumadin however the doctor said to and have his PT checked when they said and then re-adjust again. Well, now we know he was not metabolizing the Coumadin properly because of a blockage.
When he came home jaundiced it was a Saturday. Monday I had him in to the doctor ASAP and she thought this time it might really be gall bladder problems because of the symptoms (more about this later) but I do remember her mentioning cancer somewhat as an afterthought. Her office arranged blood work and an ultrasound. The ultrasound was done the next day and did show a gall bladder full of sludge. I was relieved and worried at the same time. When I had my gall bladder out I was off work for six weeks and I was worried about finances as Papa's work did not provide short term disability or sick pay. Six weeks without a pay check is a damn long time. But it seemed the lesser of any problems that it could possibily have been.
After she got the results of the ultrasound the doctor arranged for Papa to see a gastroenterologist. He said it appeared from the ultrasound that a gall stone was blocking the common bile duct. He ordered an MRI and after that decided to do an ERCP, an endoscopy procedure where an endoscope is passed through the mouth to the stomach. He felt that he might be able to retreive the stone that way and if not, then Papa would have to have his gall bladder removed the conventional way. I remember talking with Papa and saying... at least you don't have pancreatic cancer, that is almost always a death sentence. We talked about Michael Landon, Patrick Swayze, the woman in the chat room... all dead or dying from pancreatic cancer.
The ERCP was Friday, June 12th. The doctor did not find a gall stone, he found a tumor. That is what was blocking the bile duct. He put a stent in place to hold the duct open and did a biopsy. Then he sent a surgeon to see Papa.
Of course by this time Papa is frantic to get out of the hospital but they made him stay to get surgical clearance from his cardiac docs. I practically had to chain him to the bed. He did not feel sick and he wanted to be home with his family. The surgeon told us Papa needed a Whipple procedure and it needed to be done ASAP. I remembered that from nursing school although I had never taken care of anyone who had one. I just remembered that it was said "they take everything." He drew pictures of the procedure all over the bed sheet, outlining what he planned to do. I could see Papa turning green under his already yellow tinged skin. The surgeon said that he would look by scope first and do a more in depth biopsy and would not do the Whipple unless it was necessary. Papa finally got to come home for a day or so before going back in on Wednesday the 17th.
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