The Long Road... #2014reboot

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Wednesday, October 27, 2010

#268: Saying "Yes" to Now

I had an epiphany today. I haven't been living "in the moment" since my last radiation treatment. That's when the action stopped and all the waiting started. During treatment, there was always something to do. Go in for radiation or chemo. Get my blood checked. Squirt nutrition through my PEG tube. Keep my meds on schedule. There was no waiting around because there was nothing to wait for. The past didn't matter and the future was too unknowable to dwell on. So I just moved from task to task, living in "the now," not worried about the things I couldn't do anything about.

But since the end of treatment, there's been a lot of waiting and worrying. Will this blood clot clear up? Will the next scan be clear? Will I be able to run or act again? Without the discipline of a schedule, I let myself fall into the very trap I avoided through all the cutting and radiating and puking this summer. I started worrying about things I could do nothing about. And doing nothing about the things I can change. No wonder I've been so depressed. I've turned the Serenity Prayer upside down. I met with a new therapist yesterday. A head-shrinker, I mean. I've had mixed results with shrinks in my life. The psychiatrist's medicine cabinet always seems to give me better results than talk therapy, but I think this guy is going to help me get some things straightened out.

We talked yesterday about "values." Not the things you say you care about, but the things your life shows are important to you. I've had to look at the way I spend my time and  to consider the things I value. Once it was work and making money. Now it's sleep and browsing around on Facebook. The shrink asked me about social interactions - what contact do I have with other people? I had to admit to myself that I've been hiding. I haven't been valuing all the people who have showed me so much love in the past few months. I've been valuing my depression. It has been my constant companion. That's crazy.

Well, yeah. That's why they call it crazy. If we were always rational, there would be no nut houses.

I spent some time in the hospital last year for my depression. Things had gotten pretty bad and I was lost. I felt like there was no reason for me to continue living. I had lost my job and failed at two others. Our debts were piling up and it seemed certain that we were going to lose our house. Mrs P felt a million miles away and all I wanted to do was cry. I was way past the point of "pulling myself together." We wound up sitting in a room with a social worker who asked me about an hour's worth of questions, then suggested I be admitted for a while.

I've never written about this before. Maybe I'll fill in the gaps some day. At the time, I thought it was the hardest thing I'd ever have to go through. In a way, it still is. It's a lot easier to tell people you have cancer than to tell them you're certifiable. Certified, actually.

Anyway, one of the things that they taught us in the hospital was that you can change the way you feel about things by changing the way you think about them. If I decide that my life is hard because people don't like me and are trying to hurt me, then I'm going to be angry and paranoid. If I can change that thinking, realize that life is hard because --- I don't know --- because there are just some things that happen and we can't change them, that is going to change the way I feel about the events in my life. If I think that life is insane and random and out of control, it makes me feel hopeless. If I think that God has a plan for me, one that I can trust without knowing or understanding what it is, then I have a reason to feel like things aren't always going to be so bad.

Someone once said that religion is for the weak, and to that I answer, "Amen." I am not strong enough to take on this universe by myself. But with God's help, I can do what must be done today. Say my prayers. Get out of bed. Make a meal. Walk the dog. Write. Call a friend. It isn't a very ambitious agenda, but it is a better reflection of the things I value than hiding under the covers.

I said I had an epiphany. I guess it was this: I have nothing to wait for. There is nothing around the corner that is more important than what is right in front of me now. I had a professor who used to say, "College students are always talking about getting out into the real world. I have news for you. This is the real world." I'm learning just how right he was. Eternity isn't something you wait for. Eternity is going on right now. There is no need to wait for God's plan because it is already in motion.

There is something sort of funny about this spiritual awakening of mine. I've spent most of the year angry and doubting God. Just at the time when I would have expected to lean on Jesus the most, I felt the most alone. Now that the danger has past, I've started to realize just how present God has been. God may not have felt close, but the people God sent sure were. They answered "Yes" when God told them to call or send an email or make a casserole. God was present in the faithful people who cared about me.

Maybe that's as good a definition of faith as any. Faith is saying "Yes," to life. "Yes," to love. "Yes," to now.

Peace,

Pennsy

Monday, October 25, 2010

#267: Unbroken

I was standing by my window
On a cold and cloudy day
When I saw that hearse come rolling
For to carry my mother away



She was not my mother, but I loved her. Her sister was my mother-in-law, an angel of a woman who died just two months after Mrs P and I were married. Ever since then, “Aint Cathrin’” has been the woman who connected us to our Western Kentucky family. I remember her laughter most of all. She loved her Jesus and she loved her family and enjoyed us all. On my first trip to Barren County, she invited Mrs P and me to her house for breakfast. We had country ham and biscuits and some of her famous fried apple pies. She showed me the pictures of her children and grandchildren that hung around her single-wide trailer, a home that she kept as neat as any country cottage. I was the Yankee. The man who came from “away” to marry her niece, but to Catherine, I was good as kin.

Well I told the undertaker
Undertaker please drive slow
For that lady you are carrying
Lord, I hate to see her go

Her lung cancer was diagnosed around the time that they found my own cancer. It was a painful coincidence for our family. It seemed that we all had to choose which loved one we could be present for. I wanted to see her so much, and so did Mrs P, but the trip was just too much for me. My wife made it down a couple of times, and they talked on the phone when they could, but Catherine seemed so far away. Prayer was the only way for us to touch one another, and so we prayed. We asked God to heal her if he would, or at least to give her peace in her last few months. She prayed the same for us. She prayed for her family. During the times when I was sure God had forgotten me, she continued whispering my name in his ear, making sure that I was on his mind.

Well I followed close behind her
Tried to hold up and be brave
But I could not hide my sorrow
When they laid her in her grave

I have been to a lot of funerals in Summer Shade, KY. Charles Mac has been the undertaker there for years. The parlor is as familiar as a church. The flowers. The paneled walls. The gentle music. The loved one resting in the corner where mourners can stand privately and weep and console one another and remember. During the visitation, we greet one another with hugs. “I’m so sorry.” “I’m gonna miss her so much.” We sit in the rows of chairs and catch up with one another. “Hey Brother Bob. Y’doin’ all right?” We talk about how little rain we’ve had and gossip about one another. The ones who know it tell the story of how she died. “She just caught her breath two times, and she was gone. Just as peaceful as could be.”

The funeral is simple. Just like the faith of the people who gather there. There are no strangers. Everyone knows nearly everyone else there. We nod together as the Preacher – our nephew, Mark – tells Catherine’s story. How she had lived such a hard life, losing three children. How she never asked prayers for herself, only for others. How her faith in Jesus kept her standing when life seemed determined to beat her down. How she always called you “Honey.” “Mark, Honey, pray for my family.” “Bob, Honey, I’m so glad Martha has you.” The Preacher is sure Catherine is in Heaven and I think to myself, if anyone goes to Heaven, surely this woman is there. He tells us what he knows she would want us to hear. If we want to see her again, we need to get right with Jesus. And we can be sure that she wants to see all of us again.

The procession to the little cemetery seems a mile long. Here in the country, folks pull off to the side of the road and wait when a funeral passes by. The whole county seems to be holding their hands over their hearts to honor this child of God as she makes her way back to the earth where generations of her family lay waiting for Jesus to come again. We park in the grass and make our way up the little hill to the old cedar tree where my Mother and Father-in-law are buried. Some of the stones are over a hundred fifty years old. Some are so new that the graves are still covered with rich red earth sown with seed for the grass that will cover them by spring. The coffin lies on straps above the grave, waiting to be lowered into the earth. Chairs for the family are in rows under the green tent that Charles Mac and his family has set up. Behind the grave, a mound of earth under a green tarp waits, a yellow handled shovel resting on top. The Preacher reads the twenty-third Psalm and it seems to me that we are standing in the green pasture that David must have had in mind when he wrote it. Finally, the service is ended and we separate into little groups. We go to the graves of our own parents, children, and loved ones. The conversation is easy as they old ones tell the stories, passing down a heritage that connects each of us to the earth and to one another. I rest on a stone and chat with Mrs. P’s Mamma for a while. I’m not as unselfish as Catherine. I ask her to pray for me. When I look up the hill again, the coffin is gone. The undertakers have done their silent work and are changed into overalls. When the last car has pulled away, they will cover Aunt Catherine’s old body with red Kentucky earth, secure in the knowledge that her new body is dancing even now around the throne of God.

Went back home, Lord, oh so lonesome
Since my mother she was gone
All my brothers, sisters crying
What a home so sad and 'lone

You might expect that, but that’s not what happened at all. We got home and two-year-old Kayla was playing on the floor. The men turned on the football game. The women talked, and everyone passed the baby around like a reminder that life has a beginning as well as an end. We told stories of the family. Some who were gone, some who were still maybe a little too lively. We shared meal of catfish and cole slaw. The opinions were split on the quality of the baked beans. As darkness settled into the little holler where our family has lived since Pa Ike and Ma Sudie built the first little shack up in here in the pine thicket, we made our way to bed, one by one. The conversation gently came to a stop when the last pair turned out the lights.

Will the circle be unbroken
By and by, Lord, by and by
There's a better home awaiting
In the sky, Lord, in the sky

Yes. Yes, it will be unbroken. In a way, it already has been. In living her life as a faithful Christian, friend, mother, sister, and wife, Catherine did more than bind herself to us. She bound us to one another. There are gaps in the circle of my life. My Dad. Martha’s Momma. Uncle Russ. My friend Warren. But the spaces are only open, they are not empty. We are saving a space in the circle for Catherine, just as she and all our family who have died are saving spaces for us in Eternity. The circles may not be complete, but they can never be broken. We have one another and a God who loves us. Not even cancer, not even death can separate us from God’s love or from one another. We will be unbroken. That is our faith. That is the lesson that Catherine’s life taught us.

God bless her. God bless us all.



Peace,

Pennsy

Monday, October 18, 2010

#266: Back to "Real Life"

I have appointments with the oncologist today and the surgeon tomorrow. We'll be reviewing the results of my PET scan. As I understand it, this test will be much more definitive than the CT scan from last month. I'm hoping that the results will knock me out of my funk, whatever they are.

Mrs. P is doing a great job of going back to work. She seems to be picking up right where she left off. She's back to offering therapy and love to her young clients and their families. I'd like to be able to do that, but when I think about it, I have to admit that "where I left off" wasn't all that great. I think that's part of what has me so down. Beating cancer was great, but it didn't make any of my other problems go away. I think that part of me was grateful to have a single thing to focus on. I could ignore everything else, because when your life is at stake, nothing else matters. Now I have to go back to "real life" - whatever that is going to be. There are things that can't be fixed by lying on a table and letting them shoot you full of radiation.

I watched a couple of debates on TV last week. One was between Christine "I'm not a witch" and whoever the little guy she's running against is. The other was between Rand Paul and Jack Conway, the senatorial candidates in KY. These are two very different races that pose the same question. Is it better to elect someone with integrity and the courage of their convictions, or to elect the person likely to vote the way you want them to? Christine what's her name is not stupid, but she is ill informed about a lot of things. She believes some thinks I think are nuts, but she's honest about it. Her opponent is a liar of the first water. It's one thing to pad your resume with school credentials that are kind of true. It's a whole 'nother thing to lie about fighting in a war that you never saw. How do you pick between a nut and a liar?

The Kentucky race is harder for me, maybe because it's closer to home. Rand Paul is clearly the grown-up in the room. Conway says absurd things about his opponent, pulling phrases out of context to paint a false picture of what Paul stands for. Paul lets Karl Rove and his assassins do the dirty work in his campaign, while sticking to libertarian ideology that ignores the real consequences of his ideas. I don't agree with Rand Paul, but I sure respect him a lot more than the democrat running against him. So do I vote for the better man, or for the man whose votes will be more in line with my own ideas?

See what I mean? Cancer is so much easier than real life...

Peace,

Pennsy

Friday, October 15, 2010

#265: Blood Will Have Blood

My niece is reading the Scottish Play in high school. She's hating it, which leads me to think that she needs a better teacher. We read R&J in school, and Hamlet, but I think we would have all preferred Mr and Mrs M.

Blood has been an ongoing theme for me during my illness. They started drawing blood from me back in March, and I don't think I've gone a week since then without giving up at least a vial of the stuff. Funny thing is, they aren't looking for cancer, they're looking for the damage that the treatment might be doing. I have come to trust the phlebotomists at the Markey Center. We know one another and joke together. They are real pros. Now and then I get someone new. Before they stick me, I always ask the same question. "Are you a good shot?" I have found that the confidence level in the answer is a pretty good indicator of how things are going to go. One tech who answered, "The best!" was so smooth that I didn't even feel the needle prick. Another who answered, "I think so," stuck the back of my hand 6 times before calling for help from a nurse who slipped the butterfly into place on the first gentle shot.

For about a year, I've been taking medicine to regulate my "blood pressure." I confess, I have no idea what that expression means. Since I don't have more or fewer vessels, it seems like high blood pressure must mean I have too much blood, but leeches have never been prescribed. They just give me these tiny little pills. One of the most severe symptoms that led to the diagnosis of my pulmonary embolus was that my blood pressure crashed when I stood up. It dropped about twenty points. That's what convinced the docs to send me for the CT scan that revealed the clot. Now, I find that dehydration can affect my blood pressure. If I don't eat and drink enough, I can get dizzy and even pass out. After years of therapy to teach me to deal with too much pressure, I find out that not enough pressure can be just as bad.

For a couple of weeks, I was going in every day to receive two injections of blood thinners in my belly. Dee, the cancer team leader, started calling me "My little pin cushion." Here, too, different techniques had different effects. Sometimes there was no sensation at all. Other times, the shots burned as if they were shooting anti-freeze into me. My stomach was covered with tiny bruises, an effect of the blood thinner they were using to break up the blood clot. The nurses who made a big deal about the shot, warning me when they were about to stick me and being careful not to inject it too fast were usually the ones whose shots were the most painful. I finally asked them to stop saying, "One, Two, Three, Little Stick." because I always clenched up my muscles on "Three." I'm not sure why they do this. It always makes it worse for me.

There was also some blood in places where it didn't belong. When I woke up after my surgery, there was dried blood in the hair on the back of my neck. Mrs P told me that they had some trouble controlling my bleeding on the table. There was also a little plastic bottle attached to a tube that was sutured into my incision. This was a drain to allow excess fluid to escape. A nurse would come in every few hours and empty the bloody stuff and replace the bottle. There was plenty when they pulled all my teeth out. As they were rolling me out after the extraction, I upchucked in the hall and left a bloody trail all the way to the men's room. That happened again a few weeks later in the chemo infusion room, though I'm not sure we ever established why. I leaked around the PEG tube, when it was new. And the little incision where they put in my IVC filter stained a couple pairs of drawers.

Though the cancer didn't do much to my blood chemistry, the medicine has. During Chemo and Radiation, my white blood count plummeted. It was so bad that they had to cancel the last Chemo treatment. Since they found the clot in my chest, they've been using drugs to manipulate my platelet count so my blood doesn't clot so easily. The bad news here is that I now bleed with the greatest of ease. The slightest bump leaves me black and blue, and the bruise stays for a long time.

On Tuesday, a new nurse drew my blood. She assured me that she was a good shot, and she was, hitting the vein on the first try. Thing is, she forgot to close the end of the butterfly and I started bleeding out through the needle. By the time she had the cap in place, there was blood running down my forearm and pooling in the  vinyl pillow under my elbow. After removing the cushion, she cleaned me up carefully. No harm done. While she worked, I contemplated the little puddle of fluid on the plastic pillow. Such a lot of fuss over something so simple. This was the juice that carried nutrition and oxygen throughout my body. It served to cleanse new wounds and to heal old ones. It had helped me to fight off infection during my treatments. It had almost killed me by clotting up in my legs and nearly blocking the blood flow to my heart. My own blood had brought me closer to death than the cancer ever did. All that power in a tiny red puddle.

Today, my blood is still pretty unstable. They can't remove the PEG tube until my platelets are right. No sense in pulling out the hose and causing massive internal bleeding. They check me weekly and adjust the medicine accordingly. Sooner or later, we'll get it right. Yesterday they shot me with a radioactive isotope of some kind for my PET scan. I'll have results from the scan on Monday. Meantime, my famous blood can be found with a Geiger counter. My blood continues to be a topic of great interest to my caregivers. They'll probably keep taking it and studying it for as long as I live. A friendly nurse draws a vial or two or three or four. Those are sent to an anonymous stranger in "the lab." A few minutes later, a sheet full of numbers comes back to my doctors who are able to tell many things from the columns of figures. It's a mysterious process.

Almost as mysterious as the fluid whose secrets it is meant to unravel.

Monday, October 11, 2010

#264: In A Funk

Where have I been?

Good question. I've been asking myself that for almost a month. A lot has happened, I guess. On the other hand, nothing has really happened at all. I have been stuck in a massive depression since getting the news that I was not going to die. This makes no sense to me. They tell me that it's not uncommon. People get used to the idea that their life might end, then in a flash, the whole picture changes and it's hard to cope with. I was surprised all summer that my depression was laying low. We'll it's back now and making up for lost time. I saw the shrink last week. She messed with my meds a little bit and referred me to a counsellor. Just what I need. More doctors.


You should see the other guy.
What else has happened... I passed out in the bathroom last Sunday. Standing at the toilet doing my morning business and the next minute I heard what I thought was china breaking. I had fainted and fallen backwards into the tile wall, knocking about twelve tiles out of the corner and apparently breaking a rib on the bathtub spout. I say apparently because the doc told us that if there was a cracked rib, there was nothing they could do about it anyway, so I decided there was no point to getting another CT scan. Now I have these two huge bruises on my back. Thanks to the blood thinner they are apt to be there for a long time.

The whole episode scared the daylights out of Mum. She had made plans to go home, and was considering staying longer, but we convinced her that I was going to be ok. The doc said I was just dehydrated because I was not eating enough.

CHOMP!
I got my teeth last week. It was quite a process. First Dr. K, the RAD Oncologist told me it was OK to see the dentist. Then the dentist checked out my gums and gathered my history. He spoke with the folks at the Markey Center about the condition of my mouth, then we did the impressions. This involves filling two metal trays with sticky goo and pressing them onto your gums. This is how we learned that I have a very sensitive gag reflex. Never puked on a dentist before, though I would have liked to on a couple of them. The next day, they had cast wax forms out of the putty negatives and we tried them on. The Dentist did lots of sculpting and shaping, trying to get the best fit possible. We picked out a color, (an insane task, if you ask me. How are you supposed to know what color your teeth should be?) Then the way models went off to the lab. A week later, I went in again and the lab had put teeth into the wax. More molding and sculpting. After so long without teeth, I felt like I had a mouth full of golf balls. Once the doc and I were satisfied, the models went back to the lab, and I made another appointment. Two weeks after my first appointment, they gave me my dentures.

Fake teeth take some getting used to. Chewing becomes a conscious act. I've never really given much thought to the process of moving food from my lips to my throat before, but suddenly it's something I have to do on purpose. Speaking is also an adventure. I don't have a lot of diction problems, but there is some work to do. My "s" sounds whistle and "k" sounds are a special challenge. When I say "k" my tongue taps the roof of my mouth right at the spot where the back edge of my upper plate sits. That mushes the sound up a little and if I'm talking fast enough, it can actually knock my teeth loose. I think I can solve these things with practice.

I've had a couple of rehearsals. This weekend's really wore me out. I sang OK, but got tired so fast. After a couple of hours, I could barely get up to lean on the piano. I guess conditioning will come in time, but I am so tired of being patient. I want everything to be better NOW!

It has taken me a while to get up the nerve to write again. I didn't want to get online and whine about how hard it is to be not dying of cancer. It's absurd to me. Maybe I was ashamed of the way I was feeling. Maybe I just couldn't make sense of it. I still can't. Guess I'm just hoping that putting all this into words will help me, or maybe it will help someone who has to travel this road after me.

Whatever good it does, it feels good to write again. I need to make it a habit.

Peace,

Pennsy
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