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