Labs are not just dogs

Wednesday is chemo day. Papa gets chemo every Wednesday for three weeks and the fourth week is lab work. When we arrive at chemo the first thing they do is weigh him to make sure he isn't losing too much weight. Then they take his blood pressure and temperature and then draw blood for lab work.

A glitch in any one of these can cancel or postpone a chemo treatment. I don't know how you would feel about yourself, but I want Papa to have every treatment, on the schedule originally set by the oncologist. I want to get this stuff into him as quickly as possible to ensure recovery as soon as possible.

We encountered glitches as soon as he began this three week on, one week off schedule. During the time he got chemo and radiation together there was no problem. That was because the chemo drug was at a half strength dosage. The drug Papa is given is called Gemzar. It is the first line chemo agent for pancreatic cancer and is also used for ovarian cancer, certain lung cancers and others. We were told that it is less toxic to many patients than other chemo agents but it does cause Papa severe nausea (they give him meds for this that help enormously). He has not had any hair loss but we tease him and tell him we really wouldn't know the difference anyway because he is so bald.

When they do the blood tests they are primarily looking for changes in WBC's... white blood cells, platelets and RBC's... red blood cells. A decrease in WBC's can leave a patient at risk for any infection that comes down the pike. Low platelets leave a person at risk for excessive bleeding (Papa is on Coumadin and Plavix too and that increases the risk even more) and low RBC's would leave him anemic. Before the first chemo out of three (1/3) he is ok but when it comes to 2/3 his WBC's are coming down and by 3/3 they are looking at him and taking his temp and asking "are you sure you feel ok?" We have a seven year old child living with us and a toddler... two age groups known for frequent infections, colds, flus etc. Then there is the H1N1 and this is seasonal flu season to boot. We wash hands obsessively in this house and are considering taking stock in Purell.

This pattern of increasingly low white blood cells showed it self by the second cycle of chemo. The doctor reduced the amount of the drug, hoping to head off the low WBC's for the next cycle but it did not work. Then a couple weeks before Thanksgiving they had to skip one session because they were so low and they gave him Neupogen. Neupogen is a drug to build up the WBC's... it is given as a sub q injection, just under the skin, like how insulin is given. This really helped but the next session was the same thing... low WBC's. I asked the nurse, couldn't I give him the Neupogen here at home after every session as a preventative measure? Why wait till they go low and possibly have to skip a session or reduce the Gemzar dosage again? So that is what we are doing... chemo on Wednesday, Neupogen on Friday, Saturday and Sunday then repeat 2x more... fourth week lab work.

Can you believe that Papa balks every fourth week when we have to go for the lab work? He knows it is essential to know these values but he hates going so much, more than going for chemo. I always have to insist that he go cause left up to him, he wouldn't.

Another lab test they do is for tumor markers. Certain cancers show up in your blood as high levels of this or that chemical or enzyme etc. The tumor marker for pancreatic cancer is called CA19-9. The normal level for this marker is below 37. Before he had his surgery Papa's level was 242. The doctor told us he want's the level below 28. They check this CA19-9 about every four weeks. First Papa was at 33, then 37, then it crept up to 39 and this past Wednesday it was 42. One time I asked the doctor what it meant if it went up and he said that sometimes it does go up and down but what he does not want to see is a gradual increase that does not come back down. Well hell, that's what it's doing!

When the nurse told us the level this past Wednesday Papa asked if 42 was bad. I know it's not good... does he remember what the doctor said? I don't know. The nurse told him that unless it goes up five points... like from 39 to 44, she is not concerned. She indicated that 42 was not "that" high. But it's creeping up, slowly but surely. I want to speak to the doctor but there is no way I can do that without Papa knowing. Unless something happens we do not see the oncologist again till January 27th. So from now till then I will anxiously be watching for signs of jaundice or an increase in nausea or any of the other symptoms that might indicate that chemo is not working as well as we hoped it would. Again with the waiting!!

Last night we were in the living room and had finished family devotions. After reading the devotional we go around the room and each of us in turn thanks God for His many blessings, whatever they may be, and prays about the matters that concern him. We believe there is power in prayer and power in people praying together. One thing we always pray about is healing for those we know who may be ill... Laura's mom, Laurie's mom too, the wife of the man in the chat room, the lady that goes to Sara's shop, to name a few, and of course, especially Papa. After we were done I finally got up the nerve to ask Papa point blank how he felt about all this. Is he scared? Is he worried?

His first concern was for the babies. He is worried that if he dies they will not understand, that they will think Papa abandoned them, just left them and went away with no thought or care for them. Melanie said she could imagine Maeva wandering around the house, bewildered, calling for her beloved "Ming-o-ma." Mae-Mae adores her papa and considers him to be her own personal possession. Melanie assured Papa that Mae and Eli and Noelle (Ben and Sara's baby daughter), and the bigger kids too, will know just how much he loves them. He nodded... he knew we all would do that. Then he said he's a little scared, not of death itself and beyond, but of the process of getting there, of pain and disability, of the indignities of dying, of the pain it would cause those who care about him. It's the same answer I would have given about myself.

Your History Can Kick You In The Ass

Happy New Year to all. It is my fervent prayer that 2010 will be a better year for my family, for this State of Michigan, for our country, indeed, for the world.

We are staying home tonight (this entry was started on the 31st), as is our usual custom. Papa and I have never been "party" people. By this I mean we do not go to parties where the intention is to see just how much one can drink and still be able to walk... or not! We (Papa and I) do not frequent bars either, actually he and I do not drink alcohol at all. This is because he is a recovered alcoholic. He was never diagnosed by a professional as being an alcoholic but he believes himself to be one. He comes from a long line of alcoholics and has perpetuated the family tradition in at least one of our children. Papa and I went to high school together where I knew him only casually. We met up again one day, several months after my first husband was killed in a car accident. I was taking my four year old son ice skating and Papa skated up to me to say hello and remind me who he was. He was at the rink alone, celebrating the one year mark of his sobriety and the cessation of his smoking. He was alone for this very special occasion because all of his friends were drinkers and could not function without a beer and cigarette within reach. Neither I, nor any of my family ever knew him as a smoker or drinker and none of our children ever has either.

Papa hates the fact that he ever was a drinker. Even to this day, 37 years after stopping drinking and smoking, old friends occasionally remind him of something hilarious he did while drunk, that he can not remember. He hates that he was a fool, he regrets the things he did, like smash into strangers cars just for the fun of it, or scaring the hell out of his friends when driving like a maniac, or standing on the seat, hands in the air, on a moving motorcycle. He tells me of times that he spent weeks drunk, where he would get drunk before he went to work then spend several hours after work at a bar drinking, then go home and drink more till he passed out then get up and go to work and start the cycle over again... and again... and again. Papa was an auto worker at the time and this was a common practice among many of the auto workers. He says now you know why cars fall apart... drunks built them. Scary thought!

Some of the stories are very funny and I can not help but laugh at them, but part of the laughter is in wonder that Papa ever acted like that... that is not the man that I know.

Smoking was the same for him. He says that, for him at least, smoking and drinking go together. That is why he had to quit them both at the same time. You might think this would be a very difficult thing to do but he did it cold turkey. Papa does not take credit for this himself... he says "God took it out of me," and considers this his own personal miracle.

I was a smoker too, I loved smoking so much. Then I had this beautiful baby girl who has learning disabilities. Learning everything was so hard for her. She always tested within normal limits but she spent her entire school life in special ed. Thank you God for those teachers who helped my girl. Andi is a grown woman now, married to a wonderful man and step mom to six great kids who we are proud to consider our own. People tell me I should not blame myself for Andi's problems but I know they were caused by my smoking. When we got together Papa nagged me and nagged me to stop smoking. It was almost a deal breaker. I tried to quit many times. I can not even guess at how many packs of cigarettes I bought, smoked one in the car with the windows rolled down to get rid of the smoke, and then threw the rest of the pack away, out the car window, so I wouldn't get caught smoking yet again. Then Papa and I decided we wanted another baby and thinking of Andi finally gave me the right incentive to quit.

Both Papa and I have seen the devestation these habits can cause, close up and personal. My father, a long time smoker, but not a drinker, died at 53 from cardiac arrest... smoking certainly a major contributing factor. My mom, also a non-drinker, was a heavy smoker. She had a beautiful singing voice that she ruined with smoking. She had a chronic cough and chronic bronchitis. I could pick her out of a crowd by following her cough... ask me and I will tell you that story. She died just short of her 63rd birthday from pneumonia and complications of diabetes. My mom died the week of our oldest son's wedding. That was an incredibly difficult time for me, for the entire family. It is not easy to mourn and celebrate at the same time. It makes you feel guilty to be happy. I miss my mom very much and I sure do wish I had her around to help me get through all this mess with Papa.

Papa's mother, 62, a smoker and drinker, died from liver and kidney failure and his dad, 68, a drinker who quit smoking, died from esophageal varicies (varicose veins in the esophagus), a particularily nasty way to die and a common finding in long time drinkers. His extended family was well known in this area for their drinking habits. One of our children has a life ruined by drinking and she is doing her best to ruin her children's lives too.

She was not raised by Papa and me but our other four children were. My two oldest knew me as a smoker but the two youngest did not and as I said before, none of his children ever knew Papa as a smoker or drinker. All our time together we have cautioned our children against smoking and drinking but it did no good. I can not understand this at all. Did they start because of peer pressure? Was it just in rebellion against parental authority? They all are at such high risk for problems caused by these things, and they CHOOSE to do it. Papa and I do not believe that alcoholism is a disease. It is something that is chosen because people make a conscious decision to take that next drink. No one chooses polio, no one chooses multiple sclerosis, no one chooses leukemia. But they do choose the distinct possibility of liver failure, just to name one consequence, by drinking. Same goes for smoking. My daughter and her husband that live with us are both smokers. They think if they go outside to smoke that it will not affect their kids or those around them, but they reek of smoke when they enter the house. It may not affect their kids health, but it will affect them when mama dies young cause she has to light up yet another cigarette.

I know I have ranted and raved here but these things are important. Why? Because the only reasons the doctors have given that Papa has pancreatic cancer is because he once smoked and drank to excess.

At 4pm on New Year's Eve Papa looked at me and said, "it looks like I'm going to make it to 2010 after all."

Poems and Prayers and Promises

In 1969 a book written by Dr. Elisabeth Kubler-Ross was published called "On Death and Dying" in which she introduced her theories on grief. She states that people who learn they are dying, or who have suffered great personal loss or tragedy, go through five stages of grief: denial, anger, bargaining, depression and finally, acceptance.

I do not want to write extensively on her model so I am including a link to a Wikipedia article on the subject for those who wish to know more. I certainly do not want to give incorrect information.

Kübler-Ross model - Wikipedia, the free encyclopedia

I learned about these stages of grief in nursing school and I saw examples of them often in my work. Kubler-Ross says that not everyone goes through all of the stages but they do go through at least two of them. They may not always be experienced in the order given either and some people go back and forth between the stages.

In a previous posting I mentioned that Papa and I have not really discussed his condition or his wishes in depth. Well... until thinking about this today, I believed I had not seen those stages of grief either. Now, reflecting on this, I believe I have seen at least two in him: denial and depression, and some in me too. I feel he is in denial because he doesn't HEAR what the doctors say, and also what they do not say. It's as if he is saying... they have given me this diagnosis but I know they don't really mean ME! It's not really as serious as they say it is.

As for anger... he has not really shown that. Maybe inside himself he does feel angry but there has been no outward sign... no rending of clothing, no screaming or throwing objects or wrecking furniture or punching holes in walls. This to me is unusual because I have always considered Papa to be an angry man. All of our lives together I have seen him be quick to anger and usually for no good or apparent reason and often out of proportion to whatever offense may have or have not happened. Perhaps this in it's self is a sign of grief because it is unusual behavior.

Bargaining is the same, I have not seen it but I do think this is something that people internalize. I'm sure he has done his bargaining... I can not imagine him not praying to God... please let me live long enough to see Lia and Mae and Noelle get married, I promise I will do better, go to church, treat my wife better, love my daughter unconditionally like You love me, give to charity, notdoallthebadthingIknowIshouldn'tdo... just give me five more years, three more, one more, please God.

Depression is a given with Papa. Just like anger, I believe he has lived with depression on and off for many years, sometimes worse than other times. I have even suggested several times that he ask our doctor about medication for depression but he never has. I think he doesn't take that suggestion seriously. I ask myself, how could he NOT be depressed, knowing that he may die soon, may die painfully? It would depress the hell outta me, I can tell you that. His days now pass with him sitting on the couch, in the favored spot where he can best see the TV. He has control of the remote most of the time but he does share. Daughter complains seldom when her father wants to watch MMA or yet another karate type movie. Mae-Mae brings her books and toys to her "Ming-o-ma" and he helps Eli get over his qualms about eating by praying for him to ease his fears. Right now he is not really down-and-out sick. He is tired most of the time and he has nausea now and then but he is not having the vomiting and/or diarrhea that so many chemo patients do. But that is his activity, sitting on the couch watching TV. We go for short rides around the countryside once or twice a week and we go to chemo. Other than that he is on the couch or in bed.

Yesterday he asked me to make him a sandwich. For many weeks now I have been trying to get him to do more for himself and finally I had just had enough. I yelled at him... you are not that sick Mike. You are quite capable of making your own damn sandwich. My work here has increased ten-fold since you have been home all the time and since the kids have moved in. It's a lot more work for me and for Melanie and you are perfectly able to do things for yourself.

I tried not to get angry with him but I was very angry, and out of proportion to the offense too. One thing about those stages of grief... they happen to family members too and I am also going through them. You know what? I feel like a real bitch right now, complaining about this. For the last several postings I have been getting responses from readers about what a good wife I am, how loving I am, how lucky Papa is and I feel guilty. I do not feel good or loving. I am angry on so many levels and for so many reasons. I am not ready to be his care-giver. I do not want to have to take care of him like I took care of his brother. I resent having to give up all my free time and the loss of my privacy. I was used to being alone and I rather liked it. My kids visited and then they went home, my husband was on the road and while I saw him most every day and he was home every weekend and several days during the week, still I had time to myself... time to read or sew or just do what ever I wanted. I feel I have earned these rights and now they are gone. This kind of thing was supposed to be years away yet, not now. I feel betrayed. I almost feel like he (Papa) did this to me... how incredibly wrong is that anyway? Remember what I said before? Humans plan and God laughs.

God, how horrible a person does that make me?? I am not sick... well, who knows? I could be...but I am not facing known death, albeit death that could yet be years away. I have not had my belly cut open and a large part of my insides removed, left with an enormous scar and a new abdominal topography. I am not the one that has had to endure the rigors of radiation and chemotherapy. I think I am a very selfish person. I need to remember that I am in my marriage for life, for better or worse, in sickness and health... all that stuff. We have had a lot of ups and downs, some very serious, and we have always managed to get through it. We will get through all this too. I will get through this.

So, grief... denial, anger, bargaining, depression and acceptance. I think we actually arrived at acceptance before we hit those other stages. After all, there is nothing we can do about the fate that has been handed us. We just have to learn a way to deal with it.

Papa and I have always loved the singer John Denver. I remember so clearly one vacation we took when we had our motor home. We went to Virginia and West Virginia and I remember driving through the Appalachian's listening to the 8-track ( see how long ago that was? lol) playing John Denver. I have been thinking about him for some reason, while writing today, and I remembered a song he wrote that I have always felt was as much about contemplating death as it is about contemplating life. I hope you will take a minute and read it.

Lyrics to Poems, Prayers And Promises by John Denver

I've been lately thinking about my life's time
all the things I've done and how it's been,
and I can't help believin' in my own mind
I know I'm gonna hate to see it end.
I've seen a lot of sunshine
slept out in the rain spent a night or two all on my own
I've known my lady's pleasures
had myself some friends
spent a time or two in my own home.

Days they pass so quickly now, the nights are seldom long
time around me whispers when it's cold.
The changes somehow frightens me, still I have to smile
it turns me on to think of growing old.
It's tho' my life's been good to me there's still so much to do
so many things my mind has never known
I'd like to raise a fam'ly
I'd like to sail away
dance across the mountains on the moon.

Ref.) I have to say it now it's been good life all in all,
it's really fine to have a chance to hang around.
and lie there by the fire and watch the evening tire,
while all my friends and my old lady sit and pass a pipe around
and talk of poems and prayers and promises and things that we believe in, how sweet it is to love someone, how right it is to care,
how long it's been since yesterday what about tomorrow and what about our dreams and all the memories we share
[ Poems, Prayers And Promises Lyrics on http://www.lyricsmania.com/ ]

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.

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.

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

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.