Yesterday's blog scared my Mom, so first of all let me tell you that I've eaten several times today. I"ve also had about two liters of water already. No woozies.
My therapist has been encouraging me to practice "mindfulness." To use my senses to stay connected to the present. I tend to drift off in my mind, but paying attention to the things that I see and smell and hear can help me to stay in reality. So today, Jake and I walked around the dog park in Coldstream Park. There are several of these parks around Lexington, but Coldstream is my favorite. It is huge and rarely crowded. This makes it easy for the dogs to slip quickly into an organized pack, and also makes it easy for the humans to talk or avoid one another, depending on their temperament. (No surprise that the dogs always seem to get along better than the people. Maybe it's all that sniffing.) The park is 12 acres, divided in half so there's a fence between little dogs and big dogs.
It is hard to say how long the walking path is around the big dog side. I've never been able to use a pedometer because my middle jiggles too much. Using the satellite photos on MapQuest and one of my favorite Internet time wasting sites, MapMyRUN, I've estimated that it's about half a mile. If that's the case, Jake and I walked it twice around at 22 minute per mile pace, much better time than we did around the neighborhood.
I'm exagerrating for Jake a little. He only did the second lap with me. During my first lap, Jake was dogging it with the other hounds. Well, hounds and people. Jake has a classic Golden temperment and loves humans as much as canines. He will latch on to one of the people who come to the park and ignore me completely. Dog people tend to love him back because he's cute and friendly and very submissive with the other animals. Like his papa, Jake is definitely a lover, not a fighter.
Which is why I was so surprised when a gorgeous German Shepherd named Gretta took such an aggressive stance toward Jake. We had finished our mile and were resting on a bench when Gretta, her mama, and a little yippy dog named Diego came through the gate. Jake and I shared some water with them, and they went off running and playing together. Gretta and Diego's lady sat down next to me and we talked about our dogs. It became obvious pretty quickly that Jake was worn out. After a few minutes of wrestling and running, he came back to the bench, had a sip of water, then threw himself down at my neighbor's feet in his "Oh, God, I'm exhausted. Please love me," pose. It's a real heartbreaker, especially when he rolls his eyes up at you. So here's the picture. I'm sitting on the bench, drinking from the bottle of water the dogs and I were sharing. The lady is sitting to my left, with Diego between us, yipping to himself. And Jake is flopped down in the pose I just described. Sort of a white trash Norman Rockwell moment.
Gretta was furious. She was clearly not interested in sharing her family with anyone. She started barking and growling at Jake with some ferocity. Like an idiot, he laid in the dust with his head on his new best friend's shoe. The Shepherd barked and snapped. Your inclination in a situation like this is always to yell at the dog, trying to get them to calm down. Of course to the dog, it just seems like you are joining in with the barking. Jake finally got the hint and tried to get up, but Gretta pounced and knocked him down. Finally he rose and walked around the bench with her going ape behind him. When they came around to the front of the bench again, I foolishly stuck my hand between them. Gretta caught the back of my hand with her very large jaws. She was as surprised as I was. I don't think she actually bit me. More like I put my hand where her mouth happened to be going. I was left with a scratch, not a puncture, and we humans decided that it would be best to part.
As their name implies, Shepherds are built to protect helpless things. Jake is no guard dog. If anything, he is built to be a happy idiot. Goldens are delighted to jump into cold water and bring dead birds back to their masters all day long. Shepherds are more likely to be the ones guarding the gun rack. Jake seems to think of everyone as part of a pack. Gretta seemed to see him as an invader in her flock. As usual, everybody was getting along fine until they humans got involved. As for Diego, the whole scene seemed to puzzle her. Of course, a female named "Diego" is probably used to a certain level of confusion.
But back to this business of mindfulness. When I walk, my mind tends to drift. This is relaxing enough, but my therapist is encouraging me to work a little harder. He wants me to be more present in the moment rather than floating away on my imagination. I can't do this consistently yet, but I did practice coaxing myself back to reality as I walked around the dog park. I felt the cool air and the warm sun. I smelled the dust as the dry trail puffed up around my steps. I praised Jake when he walked along beside me without his lead. I heard the traffic as it passed by on the road beyond the trees, and I saw the patches of green grass still holding out against the November temperatures and the long autumn drought. I was sweating lightly and my thighs felt stronger than they actually are. It was a good walk.
About that feeling strong thing. I noticed during this morning's wake up rituals that my muscles have atrophied noticeably. I've always been big and not particularly muscular, but my arms and calves are a lot floppier than they used to be. I'm walking my way toward running and lifting again in the hopes of restoring my body. I'm hoping that doing those things with a greater sense of awareness will help me to restore my mind as well. Come to think of it, I wouldn't mind if I wound up fitter and saner than I was before I got sick. I may insist on it.
Peace,
Pennsy
Wednesday, November 10, 2010
Tuesday, November 9, 2010
#273: Faint of Heart
Hey, cool. My beard is growing back. I'm thinking of this shot for the dust cover of my first novel.
But first, we still have some details to work out on the nutrition front. I fainted again last night on the way to the bathroom. The doctors agree that this is a dehydration issue, so I'm dumping quarts of water, shakes, and even ice cream into my belly. I'm gonna be downright juicy.
Have you ever fainted? It is the strangest experience. Here's what happened last night. I woke up around 4:30 with the urge to pee. For some reason I just laid in bed for a while. Didn't want to get up. Finally it became clear that the sensation was not going to go away. I threw back the covers and swung my legs over the side of the bed. I wanted to get this over with. The last thing I remember is opening the bedroom door. Then there was a thump as my head bounced off the floor. I had fallen backwards and landed in a perfectly prone position. I heard Mrs. P's voice in the dark, asking what had happened. I wanted to answer, but it felt as if she were a dream, not really standing over me. I remember noticing that my arms were straight down at my sides. It didn't feel like I was inside myself. Instead, I seemed to be observing my body there in the dark. Mrs P offered me her hand, as if she intended to lift me off the floor. She's strong, but not that strong. I slowly re-inhabited myself, and sort of wiggled over to the quilt rack in the hall. I climbed up the rack and she helped me into the bathroom. Don't tell the He Man Tough Guy Club, but I sat down to pee.
When I was finished, I made my way back to bed as gingerly as I could, and took stock. Judging from the pain in my butt, I must have landed there first. Both elbows were aching, so I guess they hit the floor together. Amazingly, my head did not hurt at all. That's noteworthy for two reasons. First, I distinctly remember my skull bouncing on the hardwood floor. Second, I missed the turned posts on the wooden foot board of the daybed by just a few inches. Given the amount of blood thinners in my system, had I cracked my head enough to bruise or cause a concussion, I would have been in serious trouble. As it is, I don't seem to have any bruises at all. Just sore spots.
The docs and I will discuss all this again. Dehydration is almost certainly part of the problem, but I'm also concerned that my blood pressure medicine may be working too well. It was fine seventy five pounds ago, but I'm wondering if losing all this weight has naturally lowered my pressure enough that the meds are making it too low. I have about five thousand different doctors writing me prescriptions. I see the surgeon next. He and I will talk about messing with the dose on the Metoprolol. These spells always come on me right after I jump up out of bed. Well, jump may be an exaggeration, but you get the idea.
Who would have ever guessed that the Fat Man's biggest problem would be not wanting to eat? It's a whole new world. On the other hand, Mrs P brought home some apple pie from church last night. It was smooth and delicious. I wonder if I can design a diet based on ice cream and pie?
Peace,
Pennsy
Sunday, November 7, 2010
#272: Refreshingly Ordinary
It looks like a slow week coming. There is only one medical appointment. I'll need to fill the rest of the time on my own. That is a good thing. For the past few months my days have been filled with one disorder or another. It feels good to make a little order out of life.
Last week was pretty good for me. I got some exercise, put a new faucet in the bathroom to replace the one I broke while trying to fix a leaky tap. I also got rid of some old friends.
Friday morning I finally took the oxygen tanks back to the medical supply place. I don't know what took me so long. I was certainly eager to be rid of the air hose when I had to wear it all the time. Part of the delay was waiting till I was strong enough to lift the condenser up into the back of the Honda. I may have overestimated my strength on that count. It was pretty heavy, though the lift doesn't seem to have done any harm to me. Mrs. P rode along with me and she lifted the machine back out of the car. I try not to get my feelings hurt by these moments when my little wife is so much stronger than I am. Sure I feel better than I did, but I'm still not sure I could beat her at arm wrestling.
After our trip to the oxygen store, we went to Meijer for some drugs and faucet washers. Turns out that the road to perdition is actually paved with little rubber rings. I came home and did all the things I remember my Dad teaching me about sinks, but once I got the thing apart it was full of lots of plastic parts that I did not recognize. I did realize that I had stripped off all the little plastic threads, so we went to Wal-Mart and bought the cheapest faucet they had. It took me an hour to break the old one and about five minutes to replace it. The Pennsy men have always hated plumbing. Plumbing jobs are the only time I can remember my father cussing. It's a family tradition I've been proud to uphold.
Yesterday's rehearsal was fun. We're at the "sing around the piano" stage. That's good since standing for two hours still feels like running a marathon to me. I was soaked with sweat in the first fifteen minutes. On the other hand, as the music starts to sink in, there is time to look up from the notes and sing to somebody. I actually started feeling like an actor sharing a scene. Which is good, since I didn't feel much like a singer. My voice was pretty tired. The advantage to this is that I had to make some different choices about the way I interpreted the music. We found some places where I don't have to be so loud. Even times where I can speak rather than sing. My weary voice forced me to think more about my character and what I'm doing in the story. This will make the guy more interesting and also give me one or two chances to show off when the role calls for it. (No matter how hard you try, you can't take the hambone out of the ham.)
Today I watched some football. The Steelers don't play till tomorrow night, so my interest was purely academic. Mrs P went out for lunch with an old friend, so Jake, Kizzie, Mo and I sat in the living room and watched the games. I enjoy these peaceful afternoons when Jake isn't harassing the cats and they aren't hissing and growling at him. Rare and precious moments.
I guess my days are full of boring ordinary things. It's actually kind of refreshing.
Peace,
Pennsy
Last week was pretty good for me. I got some exercise, put a new faucet in the bathroom to replace the one I broke while trying to fix a leaky tap. I also got rid of some old friends.
Friday morning I finally took the oxygen tanks back to the medical supply place. I don't know what took me so long. I was certainly eager to be rid of the air hose when I had to wear it all the time. Part of the delay was waiting till I was strong enough to lift the condenser up into the back of the Honda. I may have overestimated my strength on that count. It was pretty heavy, though the lift doesn't seem to have done any harm to me. Mrs. P rode along with me and she lifted the machine back out of the car. I try not to get my feelings hurt by these moments when my little wife is so much stronger than I am. Sure I feel better than I did, but I'm still not sure I could beat her at arm wrestling.
After our trip to the oxygen store, we went to Meijer for some drugs and faucet washers. Turns out that the road to perdition is actually paved with little rubber rings. I came home and did all the things I remember my Dad teaching me about sinks, but once I got the thing apart it was full of lots of plastic parts that I did not recognize. I did realize that I had stripped off all the little plastic threads, so we went to Wal-Mart and bought the cheapest faucet they had. It took me an hour to break the old one and about five minutes to replace it. The Pennsy men have always hated plumbing. Plumbing jobs are the only time I can remember my father cussing. It's a family tradition I've been proud to uphold.
Yesterday's rehearsal was fun. We're at the "sing around the piano" stage. That's good since standing for two hours still feels like running a marathon to me. I was soaked with sweat in the first fifteen minutes. On the other hand, as the music starts to sink in, there is time to look up from the notes and sing to somebody. I actually started feeling like an actor sharing a scene. Which is good, since I didn't feel much like a singer. My voice was pretty tired. The advantage to this is that I had to make some different choices about the way I interpreted the music. We found some places where I don't have to be so loud. Even times where I can speak rather than sing. My weary voice forced me to think more about my character and what I'm doing in the story. This will make the guy more interesting and also give me one or two chances to show off when the role calls for it. (No matter how hard you try, you can't take the hambone out of the ham.)
Today I watched some football. The Steelers don't play till tomorrow night, so my interest was purely academic. Mrs P went out for lunch with an old friend, so Jake, Kizzie, Mo and I sat in the living room and watched the games. I enjoy these peaceful afternoons when Jake isn't harassing the cats and they aren't hissing and growling at him. Rare and precious moments.
I guess my days are full of boring ordinary things. It's actually kind of refreshing.
Peace,
Pennsy
Thursday, November 4, 2010
#271: Once Around the Ballpark, Jake
Fat Man Walking!
First lesson: I'm going to need to learn to run with a water bottle in my hand. Jake and I walked a mile today. It took us about 25 minutes, but that includes a pause to poop and a second one to pee. (Both stops were for Jake's comfort, but I appreciated the breather.) I left my teeth at home figuring that looking like an old goober was better than choking on them half way around the block and having to carry them home in my hand. Still, my mouth dried out very fast. I always knew spit was essential for baseball players, but who knew runners would need so much of it? I made a jug of Gatorade when I got home and am enjoying some now, before the teeth go back in.
It is a fantastic day to be outside. Sunny and 52 degrees. We had some rain yesterday, so the air has that sort of cool, autumn damp that can either refresh the spirit or transmit the first bad flu of the season. They insisted I get a flu shot right after my blood counts stabilized, so I'm feeling pretty cocky. There were a couple of spots where the leaves were just amazing. There's a hedge along one parking lot that looks as if someone painted it red. We didn't see many folks on our journey. Bo the old boxer woofed as we passed his yard. There were a couple of people raking, and we encountered one runner, but mostly Jake and I were on our own this afternoon. There is a baseball park very near our home, so we took a loop around the stadium and back to the house. Right now, Jake is passed out on the floor, looking like I dragged him behind a car. I'd say we both need to get more exercise.
My mind goes to such strange places when I walk or run. I almost always have a song in my head. The iPod isn't charged up, so I had to provide my own theme song. It might be a hymn or an old advertising jingle, or as happened today, one of those corny campfire songs that we sang in Boy Scouts. Don't know if you remember "Make America Proud of You" or not. I think my Dad must have taught it to me. He taught me most of the ones I remember. So that was my music. Jake snatched a lot of my attention. He doesn't spend nearly enough time on the leash, and we have done a pretty poor job of training him to walk along. He does a lot of stopping to check the "pee mail" and I do a lot of twitching on the leash to keep him moving. We'll get lots more practice in and maybe we'll both be able to enjoy our workout more in a couple weeks. I just kept reminding myself, "I'm walking to run. I'm running to live."
That's what really got this blog started. Till I started running, I didn't really have much to say. Mostly I pontificated on things I didn't really understand. When I started working out, I wanted to keep a record for myself. I also wanted to be accountable to someone, even if nobody but Mrs P and Mum ever read it. I guess I still write for the same reasons. I want somebody to know I'm not dead. Maybe that's why everybody writes, when you come down to it.
So, we made it home. More importantly, we made it out of the house to begin with. It took me a couple of hours to get up the gumption, but by dogs, we did it. I started the day by making a task list. I have a million things to take care of, and the list was pretty overwhelming. Mrs P was at work, so Jake and I sat down with our calendar and scheduled the next few days to try to spread all those "to do's" out into manageable chunks. Number one on the list was to take my walk. I stalled. I read Facebook. Checked old e-mails. Looked over the news. But somehow I knew that today was going to be the day. I wasn't avoiding it, I was getting revved up. I don't know if that distinction makes sense to anyone else, but it felt very different to me. The trick now is going to be doing it again.
I'm gonna hit the shower now, before Mrs P gets home. Jake and I both smell pretty ripe. Afraid he's on his own though. There isn't room in there for both of us.
Peace,
Pennsy
First lesson: I'm going to need to learn to run with a water bottle in my hand. Jake and I walked a mile today. It took us about 25 minutes, but that includes a pause to poop and a second one to pee. (Both stops were for Jake's comfort, but I appreciated the breather.) I left my teeth at home figuring that looking like an old goober was better than choking on them half way around the block and having to carry them home in my hand. Still, my mouth dried out very fast. I always knew spit was essential for baseball players, but who knew runners would need so much of it? I made a jug of Gatorade when I got home and am enjoying some now, before the teeth go back in.
It is a fantastic day to be outside. Sunny and 52 degrees. We had some rain yesterday, so the air has that sort of cool, autumn damp that can either refresh the spirit or transmit the first bad flu of the season. They insisted I get a flu shot right after my blood counts stabilized, so I'm feeling pretty cocky. There were a couple of spots where the leaves were just amazing. There's a hedge along one parking lot that looks as if someone painted it red. We didn't see many folks on our journey. Bo the old boxer woofed as we passed his yard. There were a couple of people raking, and we encountered one runner, but mostly Jake and I were on our own this afternoon. There is a baseball park very near our home, so we took a loop around the stadium and back to the house. Right now, Jake is passed out on the floor, looking like I dragged him behind a car. I'd say we both need to get more exercise.
My mind goes to such strange places when I walk or run. I almost always have a song in my head. The iPod isn't charged up, so I had to provide my own theme song. It might be a hymn or an old advertising jingle, or as happened today, one of those corny campfire songs that we sang in Boy Scouts. Don't know if you remember "Make America Proud of You" or not. I think my Dad must have taught it to me. He taught me most of the ones I remember. So that was my music. Jake snatched a lot of my attention. He doesn't spend nearly enough time on the leash, and we have done a pretty poor job of training him to walk along. He does a lot of stopping to check the "pee mail" and I do a lot of twitching on the leash to keep him moving. We'll get lots more practice in and maybe we'll both be able to enjoy our workout more in a couple weeks. I just kept reminding myself, "I'm walking to run. I'm running to live."
That's what really got this blog started. Till I started running, I didn't really have much to say. Mostly I pontificated on things I didn't really understand. When I started working out, I wanted to keep a record for myself. I also wanted to be accountable to someone, even if nobody but Mrs P and Mum ever read it. I guess I still write for the same reasons. I want somebody to know I'm not dead. Maybe that's why everybody writes, when you come down to it.
So, we made it home. More importantly, we made it out of the house to begin with. It took me a couple of hours to get up the gumption, but by dogs, we did it. I started the day by making a task list. I have a million things to take care of, and the list was pretty overwhelming. Mrs P was at work, so Jake and I sat down with our calendar and scheduled the next few days to try to spread all those "to do's" out into manageable chunks. Number one on the list was to take my walk. I stalled. I read Facebook. Checked old e-mails. Looked over the news. But somehow I knew that today was going to be the day. I wasn't avoiding it, I was getting revved up. I don't know if that distinction makes sense to anyone else, but it felt very different to me. The trick now is going to be doing it again.
I'm gonna hit the shower now, before Mrs P gets home. Jake and I both smell pretty ripe. Afraid he's on his own though. There isn't room in there for both of us.
Peace,
Pennsy
Wednesday, November 3, 2010
#270: Getting Out of My Head
Mrs P hates it when I call him my "shrink." She's a therapist. She takes it a little personally. I understand that, but using words like "crazy pills" and "nut house" takes the edge off a little bit. I don't like being sick in the head, and I don't like having to get treatment for it. Joking makes it a little easier to take.
So the shrink and I met today. It was a good follow up to yesterday's group session. I told him that I was frustrated. I wake up with the intention of doing something, anything. But for some reason I feel paralized. I can sit in a chair for hours telling myself, "OK, time to get up now. Time to walk. Time to sweep the floor. Time to eat." I can spend a whole day intending to do something without doing it.
There were spaces between Donald and whatever he said / Strangers had forced him to live in his head. Not me exactly. Nobody's forced me to do anything. But I know how Donald and Lydia felt. I have always had a tendency to live in my head. When I was a kid, playing with my imaginary friends. When I first moved to New York, waiting alone for late night subway trains. Lying in bed between radiation treatments, imagining myself flying far away from my room, visiting strange places, doing heroic things. I have always had the ability to run away from whatever's going on. Nowadays, I do that a lot. The trouble is, I'm not exactly sure what I'm running away from. Or what I'm running toward.
I told the shrink, "I feel stuck in my head. I can't explain it. I know what I need to do. I tell my feet to go, but something keeps them from moving. I don't know what." He smiled at me. "It's your head. That's what's keeping you in your chair." Which is why it's a pretty good thing for me to see the head shrinker.
"I don't eat." I told him. "I've passed out twice. Once in the bathroom. Once in the living room. I didn't tell anyone about the second one. It happens because I get dehydrated. Because I don't eat. So I have to force myself to eat."
"And so you eat?"
"Right."
"Why?"
"Because I don't want to faint. I want to stay conscious."
"So you can act when you have a good enough reason?"
That caught me up short. If you want to hide from the world, passing out is a pretty good strategy. All your troubles just fade away into that dizzy haze. But for some reason, I want to stick around. The same way I decided that I was going to live the day they told me I had cancer. I wanted to grow old with Mrs P. I wanted to act again. I had to live to do that.
Some people are good at finding things to do. Mrs P's family are all like this. None of them is any good as sitting around. They have to get up and go. Fix things. Clean things. Explore things. Me? I could sit on the porch and watch the world go by for weeks. I have to talk myself into moving. This is one of the reasons I've always sought out group activities like the theatre. It's just easier for me to get going when someone is depending on me. Now that I can't work, I have to depend on myself. I can't just find something to do. I have to find reasons to do it.
The doc says that "mindfulness" can help. Make a decision about what I want, and then stay mindful of the process of meeting that goal. I want to run again. So I'm going to have to start walking. "Don't just walk," he says. "Be mindful of what you are doing. Smell the leaves. Hear the kids playing. Feel the sunshine and the autumn wind. And remember why you are walking."
I don't understand why I want to hide. So I can spend my days trying to figure it out, or I can do things that I do understand. One at a time. Rake the leaves. Wash the dishes. Exercise. Finish the taxes. It isn't going to be easy getting out of my head. It's safe in there. But if I'm ever going to discover why God saved my life, I'm going to have to start living and hope to stumble onto the answer. Something tells me that I'm not going to find it sitting in my chair.
I'll let you know how the first day goes tomorrow.
Peace,
Pennsy.
So the shrink and I met today. It was a good follow up to yesterday's group session. I told him that I was frustrated. I wake up with the intention of doing something, anything. But for some reason I feel paralized. I can sit in a chair for hours telling myself, "OK, time to get up now. Time to walk. Time to sweep the floor. Time to eat." I can spend a whole day intending to do something without doing it.
There were spaces between Donald and whatever he said / Strangers had forced him to live in his head. Not me exactly. Nobody's forced me to do anything. But I know how Donald and Lydia felt. I have always had a tendency to live in my head. When I was a kid, playing with my imaginary friends. When I first moved to New York, waiting alone for late night subway trains. Lying in bed between radiation treatments, imagining myself flying far away from my room, visiting strange places, doing heroic things. I have always had the ability to run away from whatever's going on. Nowadays, I do that a lot. The trouble is, I'm not exactly sure what I'm running away from. Or what I'm running toward.
I told the shrink, "I feel stuck in my head. I can't explain it. I know what I need to do. I tell my feet to go, but something keeps them from moving. I don't know what." He smiled at me. "It's your head. That's what's keeping you in your chair." Which is why it's a pretty good thing for me to see the head shrinker.
"I don't eat." I told him. "I've passed out twice. Once in the bathroom. Once in the living room. I didn't tell anyone about the second one. It happens because I get dehydrated. Because I don't eat. So I have to force myself to eat."
"And so you eat?"
"Right."
"Why?"
"Because I don't want to faint. I want to stay conscious."
"So you can act when you have a good enough reason?"
That caught me up short. If you want to hide from the world, passing out is a pretty good strategy. All your troubles just fade away into that dizzy haze. But for some reason, I want to stick around. The same way I decided that I was going to live the day they told me I had cancer. I wanted to grow old with Mrs P. I wanted to act again. I had to live to do that.
Some people are good at finding things to do. Mrs P's family are all like this. None of them is any good as sitting around. They have to get up and go. Fix things. Clean things. Explore things. Me? I could sit on the porch and watch the world go by for weeks. I have to talk myself into moving. This is one of the reasons I've always sought out group activities like the theatre. It's just easier for me to get going when someone is depending on me. Now that I can't work, I have to depend on myself. I can't just find something to do. I have to find reasons to do it.
The doc says that "mindfulness" can help. Make a decision about what I want, and then stay mindful of the process of meeting that goal. I want to run again. So I'm going to have to start walking. "Don't just walk," he says. "Be mindful of what you are doing. Smell the leaves. Hear the kids playing. Feel the sunshine and the autumn wind. And remember why you are walking."
I don't understand why I want to hide. So I can spend my days trying to figure it out, or I can do things that I do understand. One at a time. Rake the leaves. Wash the dishes. Exercise. Finish the taxes. It isn't going to be easy getting out of my head. It's safe in there. But if I'm ever going to discover why God saved my life, I'm going to have to start living and hope to stumble onto the answer. Something tells me that I'm not going to find it sitting in my chair.
I'll let you know how the first day goes tomorrow.
Peace,
Pennsy.
Tuesday, November 2, 2010
#269: Talking About It Helps
I haven't written much about the support group I've been attending. Early on in this adventure, a reader mentioned how much meeting with other survivors had helped her mother during treatment. The Markey Center has a lot of groups like that, including one for Head and Neck Cancer fighters and their families.Some of us are just starting radiation. Some have been cancer free for four or five years. We are each on a unique journey, but we share experiences that people who haven't had months of radiation shot into them or gallons of Sisplatin pumped through their veins don't really understand.
The group meets once a month. Some of us appear to be perfectly healthy and "normal." You wouldn't know we'd ever had cancer if we didn't tell you. Others of us have been severely disfigured by our disease and treatment. We gather together to tell one another the truth. How our food tastes. How the new teeth are fitting or the hearing aids are acting up. We talk about what we do when someone wants to take us to a restaurant or when we try to have sex. Our spouses tell stories of watching us sweat or throw up in the middle of the night while the can only stand by helplessly and watch.
And through it all, we share a common message: you're not alone. Little by little, it's gonna get better. We don't pretend it isn't hard or that it doesn't hurt. Twelve-steppers call it "rigorous honesty." We tell the truth. But part of the truth we tell is that every one of us can beat cancer, even the ones who eventually die from it. It doesn't have to destroy our spirits.
Frequently someone from Markey has a presentation on some issue of particular interest to the group. We might talk about drugs and side effects. One month we had a couple of speech pathologists come in to talk about how treatment can effect talking and swallowing and what you can do about it. Today the team's social worker spoke about an issue close to my heart: "Cancer and Depression." The pattern of the meeting was pretty typical. First the "expert" tells us what the books say. Then the real experts talk about living through it. Now, even though I don't always recognize it, I still love the sound of my own voice. When I know about something, I can talk for hours about it. I have been studying depression for most of my life, so my after dinner speech is at the ready. Today, I resisted the urge to delight the group with my pearls of wisdom. I gave listening a try. I was glad I did.
What I heard took me by surprise. We are used to encouraging one another. It's a very positive group. We share our problems and we share our hope, but it's pretty rare that we really dig down into the dark places in our hearts. With that many wounds in one room, you don't really want to start picking at scabs. Today, each of us took off the bandages and showed what was underneath. Turns out that I am not alone. Sometimes it's the diagnosis that throws us for a loop. Sometimes it's the ordeal of treatment. But most commonly it's the limbo time after treatment is over.
For weeks we have whole teams of people looking after us. Doctors and technicians asking how we're doing. Friends dropping by. Nutritionists checking on our diets and our weight. Even the dentist and the psychiatrist give a friendly prod now and then. Every day there is something to do. Every day you know that dozens of people are working and worrying and praying for you. Then all of a sudden, it's over. You don't go to the doctor every day, you go every three or five or eight weeks. Your spouse goes back to work. The people who checked in so often tell you how happy they are for your positive results and get on with their own lives. You want to join them. But for a million reasons, you can't. Turns out that for a lot of people, that's pretty depressing.
And there's another thing. Unless you're an exhibitionist like Pennsy, it's hard to talk about being depressed. After all, you've just had your life saved from cancer. What do you have to be sad about? People can understand cancer. It's real. It shows up on a CT scan. You can cure it. Mental disorders are a little harder to pin down. You don't have to be ashamed of having a tumor. Staying in bed for a week can make you feel pretty bad about yourself. I may not have many personal boundaries, but it is a lot easier for me to talk about my cancer than it ever was to talk about my depression.
Which is why it was so good to hear other people's stories. So good to tell my own. We reminded one another that even in this, we were not alone.
This is why we all tell stories, I think. Bible stories. Campfire stories. Stories about our families. Plays. Novels. TV sit-coms. We tell stories to let the rest of the world know we are here. We listen to let ourselves know that we are not alone. In Thus Spake Zarathustra, Nietsche said:
Living blood stories isn't always easy. Telling them never is. But sometimes, when you really need to hear them, it helps.
Peace,
Pennsy
The group meets once a month. Some of us appear to be perfectly healthy and "normal." You wouldn't know we'd ever had cancer if we didn't tell you. Others of us have been severely disfigured by our disease and treatment. We gather together to tell one another the truth. How our food tastes. How the new teeth are fitting or the hearing aids are acting up. We talk about what we do when someone wants to take us to a restaurant or when we try to have sex. Our spouses tell stories of watching us sweat or throw up in the middle of the night while the can only stand by helplessly and watch.
And through it all, we share a common message: you're not alone. Little by little, it's gonna get better. We don't pretend it isn't hard or that it doesn't hurt. Twelve-steppers call it "rigorous honesty." We tell the truth. But part of the truth we tell is that every one of us can beat cancer, even the ones who eventually die from it. It doesn't have to destroy our spirits.
Frequently someone from Markey has a presentation on some issue of particular interest to the group. We might talk about drugs and side effects. One month we had a couple of speech pathologists come in to talk about how treatment can effect talking and swallowing and what you can do about it. Today the team's social worker spoke about an issue close to my heart: "Cancer and Depression." The pattern of the meeting was pretty typical. First the "expert" tells us what the books say. Then the real experts talk about living through it. Now, even though I don't always recognize it, I still love the sound of my own voice. When I know about something, I can talk for hours about it. I have been studying depression for most of my life, so my after dinner speech is at the ready. Today, I resisted the urge to delight the group with my pearls of wisdom. I gave listening a try. I was glad I did.
What I heard took me by surprise. We are used to encouraging one another. It's a very positive group. We share our problems and we share our hope, but it's pretty rare that we really dig down into the dark places in our hearts. With that many wounds in one room, you don't really want to start picking at scabs. Today, each of us took off the bandages and showed what was underneath. Turns out that I am not alone. Sometimes it's the diagnosis that throws us for a loop. Sometimes it's the ordeal of treatment. But most commonly it's the limbo time after treatment is over.
For weeks we have whole teams of people looking after us. Doctors and technicians asking how we're doing. Friends dropping by. Nutritionists checking on our diets and our weight. Even the dentist and the psychiatrist give a friendly prod now and then. Every day there is something to do. Every day you know that dozens of people are working and worrying and praying for you. Then all of a sudden, it's over. You don't go to the doctor every day, you go every three or five or eight weeks. Your spouse goes back to work. The people who checked in so often tell you how happy they are for your positive results and get on with their own lives. You want to join them. But for a million reasons, you can't. Turns out that for a lot of people, that's pretty depressing.
And there's another thing. Unless you're an exhibitionist like Pennsy, it's hard to talk about being depressed. After all, you've just had your life saved from cancer. What do you have to be sad about? People can understand cancer. It's real. It shows up on a CT scan. You can cure it. Mental disorders are a little harder to pin down. You don't have to be ashamed of having a tumor. Staying in bed for a week can make you feel pretty bad about yourself. I may not have many personal boundaries, but it is a lot easier for me to talk about my cancer than it ever was to talk about my depression.
Which is why it was so good to hear other people's stories. So good to tell my own. We reminded one another that even in this, we were not alone.
This is why we all tell stories, I think. Bible stories. Campfire stories. Stories about our families. Plays. Novels. TV sit-coms. We tell stories to let the rest of the world know we are here. We listen to let ourselves know that we are not alone. In Thus Spake Zarathustra, Nietsche said:
Of all that is written, I love only what a person hath written with his blood. Write with blood, and thou wilt find that blood is spirit.... He that writeth in blood and proverbs doth not want to be read, but learnt by heart.To write with blood is to tell the truth. Rigorously. The truth is not always obvious to the casual observer, just as it is not always easy to identify a cancer survivor. The face may decieve, but the story - the blood story - tells the truth. Every one of us, no matter what we have endured in our lives, shares certain truths. We all have our own story, but none of us is alone. You can't always see that on the surface. Sometimes you have to peek under the bandages.
Living blood stories isn't always easy. Telling them never is. But sometimes, when you really need to hear them, it helps.
Peace,
Pennsy
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
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
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
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.
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.
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.
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
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!
Whatever good it does, it feels good to write again. I need to make it a habit.
Peace,
Pennsy
Thursday, September 16, 2010
#263: Intermezzo
Here's a word I learned while watching Cash Cab yesterday. Yes, I am that boring. An intermezzo can be a piece of music between the major movements of a symphony. It can also be a sorbet or wine intended to cleanse the palate between courses of a meal. That's what I'm doing now. Cleansing my palate.
Monday's meeting with the doctor was like the meal I'd been waiting for. It was delicious. I loved celebrating with friends on the phone, on Facebook, and on my blog. But something was missing. I thought that a clear CT scan would mean that it was all over. I expected to wake up the next day and start a new life. Turns out that it doesn't work that way. The threat of cancer is over, but the recovery has barely begun.
Since getting the good news, I've been exhausted. Wiped out. In his book, Lance Armstrong said he spent this period playing golf and eating Mexican food. I won't be playing any golf, but I'm not ready to jump back up on the bike just yet, either. Mrs P keeps telling me that it's going to take time.
This offends my Protestant work ethic. My mind tells me I should be up and around. Doing things. Getting stuff done. My body does not agree. In spite of the Ambien, sleep takes forever to come. When it does, I sleep for hours and hours. When I wake up, I feel like I'm in a fog. Yesterday, I tried on four pairs of shoes. I was sweating like crazy. It took me an hour to recover.
So what about this intermezzo? What is it going to sound like? It's going to be quiet. I'm afraid it's going to be bland, like a sorbet between the fish and the meat courses. And it's going to take far too long.
The first thing I did when I got home after the appointment on Monday was to start a "to do" list. They are mostly little tasks. Chores, really. They are important things, but they aren't really goals. Yes, I want to do the things that will get our lives back to normal. Do the dishes. Finish the taxes. Get the car fixed. Fold the laundry. But I want to do some bigger things, too. Direct a play. Run a 5K. Play Shakespeare. Find a smaller house. Get a job acting.
None of these things will be easy, and I can't do any of them on my own. Each will take time, planning, lots of work, and plenty of luck. But first, I'll need to pick one. And I will. Just as soon as I can get up out of this chair.
Peace,
Pennsy
Monday's meeting with the doctor was like the meal I'd been waiting for. It was delicious. I loved celebrating with friends on the phone, on Facebook, and on my blog. But something was missing. I thought that a clear CT scan would mean that it was all over. I expected to wake up the next day and start a new life. Turns out that it doesn't work that way. The threat of cancer is over, but the recovery has barely begun.
Since getting the good news, I've been exhausted. Wiped out. In his book, Lance Armstrong said he spent this period playing golf and eating Mexican food. I won't be playing any golf, but I'm not ready to jump back up on the bike just yet, either. Mrs P keeps telling me that it's going to take time.
This offends my Protestant work ethic. My mind tells me I should be up and around. Doing things. Getting stuff done. My body does not agree. In spite of the Ambien, sleep takes forever to come. When it does, I sleep for hours and hours. When I wake up, I feel like I'm in a fog. Yesterday, I tried on four pairs of shoes. I was sweating like crazy. It took me an hour to recover.
So what about this intermezzo? What is it going to sound like? It's going to be quiet. I'm afraid it's going to be bland, like a sorbet between the fish and the meat courses. And it's going to take far too long.
The first thing I did when I got home after the appointment on Monday was to start a "to do" list. They are mostly little tasks. Chores, really. They are important things, but they aren't really goals. Yes, I want to do the things that will get our lives back to normal. Do the dishes. Finish the taxes. Get the car fixed. Fold the laundry. But I want to do some bigger things, too. Direct a play. Run a 5K. Play Shakespeare. Find a smaller house. Get a job acting.
None of these things will be easy, and I can't do any of them on my own. Each will take time, planning, lots of work, and plenty of luck. But first, I'll need to pick one. And I will. Just as soon as I can get up out of this chair.
Peace,
Pennsy
Tuesday, September 14, 2010
#262: Did I Really Have Cancer?
In an exam room not much different from the one where the doc told me there was something wrong, my oncologist showed me a report saying that there were no signs of cancer on my CT scan. And the blood clot is almost gone. It's a preliminary test, but they found no signs of cancer in me. I don't know if I'm in shock or what, but I've been numb ever since.
What the hell just happened? Did I really have cancer? Did they actually cut me open and take out my jugular vein? Did they really pull all my teeth and install a hose in my stomach and shoot me with radiation and fill my veins with poison?
Did all those people really call and visit and write to say they loved me and were praying for me? Did they actually have yard sales and rummage sales and fund raisers to help when our insurance was canceled?
Was it real? Eighteen hours of sleep, puking my brains out, swallowing pain pills like tic-tacs? Did I really spend the last six months (minus two days) thinking I might be dead by Christmas? Did I dream all that?
Yesterday at 3:00 I had cancer. Then, by 4:00 I didn't. Or at least none that they could see. What the hell just happened?
What do I do now? SSI says I can go on disability. Should I take it? Should I look for a job? Go on a trip? Write one of those "I survived cancer" books? Do I volunteer somewhere? Do I spend the rest of my life looking over my shoulder for fear of a relapse? Or do I treat this like a second chance? An opportunity to get things right?
Something just took half a year of what's left of my life. I feel like it ought to mean something. Like it ought to have some significance. I'm just not sure things like this mean anything. They are just events, stuff that happens. If they have meaning, it is in the way they change us. I wonder how cancer has changed me?
Now that I'm not afraid of dying any more, will I be as patient and forgiving? Will I be as grateful? Will my priorities change? I just don't know.
Right now I don't know or feel much of anything. I guess I'm still in limbo, just a different neighborhood than the one I was in yesterday. In the seventies we had a very corny saying about today being the first day of the rest of your life. Something really big was true about my life yesterday, and now it isn't true any more. And I'm not sure what's more important: the things that changed, or the ones that will stay the same.
What's changed? I don't feel like I could die any minute. I don't feel like there is an alien living in my body. I don't feel like an invalid. I'm not fighting cancer any more. At least not my own.
What hasn't changed? I love my wife and my mom. People care for me. I want to act.
I'm sure these lists will get longer over time, but it probably isn't too productive to dwell on them. Many of my questions are going to have to answer themselves, and many will have to just remain unanswered.
Maybe the biggest thing cancer has taught me is that I am more loved than I ever thought possible. More than I could ever ask or imagine. If that's the only answer I ever get, I'd have to say it was worth it.
Peace,
Pennsy
What the hell just happened? Did I really have cancer? Did they actually cut me open and take out my jugular vein? Did they really pull all my teeth and install a hose in my stomach and shoot me with radiation and fill my veins with poison?
Did all those people really call and visit and write to say they loved me and were praying for me? Did they actually have yard sales and rummage sales and fund raisers to help when our insurance was canceled?
Was it real? Eighteen hours of sleep, puking my brains out, swallowing pain pills like tic-tacs? Did I really spend the last six months (minus two days) thinking I might be dead by Christmas? Did I dream all that?
Yesterday at 3:00 I had cancer. Then, by 4:00 I didn't. Or at least none that they could see. What the hell just happened?
What do I do now? SSI says I can go on disability. Should I take it? Should I look for a job? Go on a trip? Write one of those "I survived cancer" books? Do I volunteer somewhere? Do I spend the rest of my life looking over my shoulder for fear of a relapse? Or do I treat this like a second chance? An opportunity to get things right?
Something just took half a year of what's left of my life. I feel like it ought to mean something. Like it ought to have some significance. I'm just not sure things like this mean anything. They are just events, stuff that happens. If they have meaning, it is in the way they change us. I wonder how cancer has changed me?
Now that I'm not afraid of dying any more, will I be as patient and forgiving? Will I be as grateful? Will my priorities change? I just don't know.
Right now I don't know or feel much of anything. I guess I'm still in limbo, just a different neighborhood than the one I was in yesterday. In the seventies we had a very corny saying about today being the first day of the rest of your life. Something really big was true about my life yesterday, and now it isn't true any more. And I'm not sure what's more important: the things that changed, or the ones that will stay the same.
What's changed? I don't feel like I could die any minute. I don't feel like there is an alien living in my body. I don't feel like an invalid. I'm not fighting cancer any more. At least not my own.
What hasn't changed? I love my wife and my mom. People care for me. I want to act.
I'm sure these lists will get longer over time, but it probably isn't too productive to dwell on them. Many of my questions are going to have to answer themselves, and many will have to just remain unanswered.
Maybe the biggest thing cancer has taught me is that I am more loved than I ever thought possible. More than I could ever ask or imagine. If that's the only answer I ever get, I'd have to say it was worth it.
Peace,
Pennsy
Saturday, September 11, 2010
#261: Wait For It...
It's a surprisingly good day. I'm starting to resign myself to the idea of waiting. Mum and I joked yesterday about how silly we'll all feel on Monday when the doc tells us there's nothing wrong. That would be a good problem to have to deal with.
Cancer has radically changed the way I worry about things. I've always preached that stuff about "Consider the lilies" and whatnot. You know, "God grant me the serenity to accept the things I can not change." if you want to stay sane with cancer, you have to do more than just preach that stuff. The stakes are so high, and the worst cases so terrible that letting yourself get too far ahead would drive you crazy. Don't let me kid you, I worry. I'm not some kind of mental master. I still get scared of what might happen. But I'm a lot happier when I give my mind something else to do. Having that rehearsal this week was really a blessing. Even if I did feel "Rode hard and put up wet" when it was over. I've been living on the buzz for two days.
Today we have some guests coming to visit. Our niece and nephew-in-law are coming over before the big UK vs. Western Ky University football game tonight. It will be great to have some youthful energy in the house for a while. All us geezers are getting on one another's nerves a little. It's always good to have to put on your company manners. Even if it is only for an hour or so.
Tomorrow, I'd like to go to church. I haven't been in a while, and I feel a little like a phony only showing up when I need something. I haven't been struck by lightening yet, so I don't guess God minds too much. I have friends there, including other cancer fighters, and it does my heart good to get a little unconditional love, whatever my own motivation might be.
Besides, I guess there are worse reasons to go to church than loving one another. Come to think of it, I'm not sure there's a better one.
Peace,
Pennsy
Cancer has radically changed the way I worry about things. I've always preached that stuff about "Consider the lilies" and whatnot. You know, "God grant me the serenity to accept the things I can not change." if you want to stay sane with cancer, you have to do more than just preach that stuff. The stakes are so high, and the worst cases so terrible that letting yourself get too far ahead would drive you crazy. Don't let me kid you, I worry. I'm not some kind of mental master. I still get scared of what might happen. But I'm a lot happier when I give my mind something else to do. Having that rehearsal this week was really a blessing. Even if I did feel "Rode hard and put up wet" when it was over. I've been living on the buzz for two days.
Today we have some guests coming to visit. Our niece and nephew-in-law are coming over before the big UK vs. Western Ky University football game tonight. It will be great to have some youthful energy in the house for a while. All us geezers are getting on one another's nerves a little. It's always good to have to put on your company manners. Even if it is only for an hour or so.
Tomorrow, I'd like to go to church. I haven't been in a while, and I feel a little like a phony only showing up when I need something. I haven't been struck by lightening yet, so I don't guess God minds too much. I have friends there, including other cancer fighters, and it does my heart good to get a little unconditional love, whatever my own motivation might be.
Besides, I guess there are worse reasons to go to church than loving one another. Come to think of it, I'm not sure there's a better one.
Peace,
Pennsy
Thursday, September 9, 2010
#260: Square One
Yesterday's adventures wore me out. The scan was easy. The rehearsal was exhausting. It was only a read-through, but it was a lot more than I'm used to. Never thought I could feel so tired just from talking.
There was nothing to the CT scan. A nice lady put an IV in my arm. Hit the vein the first time. Not even a bruise. Believe me, with all the needle sticks I've had this year, I've really come to appreciate that sort of thing. The scan was quick. The tech helped me onto the table, hooked up the contrast fluid to my IV, and closed the door. One quick trip through and back and it was all over. I'll get the results Monday. In the meantime, I'll be trying to keep busy and distracted. I'm tired of fretting over things I can't do anything about.
Last night's rehearsal was hard. Physically hard. I was so excited to get started that I showed up an hour earlier than everybody else. Since we were meeting at the director's home, we sat and chatted for a while. I made friends with her dog. Once the rest of the company arrived, we had a lovely meal together. Our hostess had taken the trouble to fix a home made mushroom soup for me, and was gracious enough to eat it with me while she served the rest of her guests a more substantial feast. It reminded me of Atticus Finch eating peas with his knife. It was very kind of her to do that. The eggplant parmesan sure looked good.
Don't get me wrong about how hard the rehearsal was. It isn't like we were dancing and running around. We sat in comfortable chairs and read out loud. By the time we were finished, I wasn't sure what kind of sounds were going to come out of my mouth. The character uses lots of dialects. All mine sound like Dracula. When I tried to sing along with the music, I croaked. I'd like to say I wasn't bad for a first time back, but I was pretty bad. The drive home felt like a cross-country cattle drive. I climbed into bed and died for about fourteen hours. And for all that, I feel like a million bucks. It's great to be back doing what I love.
Still, this comeback thing is going to take longer than I thought. I can't wait to see how it turns out.
Peace,
Pennsy
There was nothing to the CT scan. A nice lady put an IV in my arm. Hit the vein the first time. Not even a bruise. Believe me, with all the needle sticks I've had this year, I've really come to appreciate that sort of thing. The scan was quick. The tech helped me onto the table, hooked up the contrast fluid to my IV, and closed the door. One quick trip through and back and it was all over. I'll get the results Monday. In the meantime, I'll be trying to keep busy and distracted. I'm tired of fretting over things I can't do anything about.
Last night's rehearsal was hard. Physically hard. I was so excited to get started that I showed up an hour earlier than everybody else. Since we were meeting at the director's home, we sat and chatted for a while. I made friends with her dog. Once the rest of the company arrived, we had a lovely meal together. Our hostess had taken the trouble to fix a home made mushroom soup for me, and was gracious enough to eat it with me while she served the rest of her guests a more substantial feast. It reminded me of Atticus Finch eating peas with his knife. It was very kind of her to do that. The eggplant parmesan sure looked good.
Don't get me wrong about how hard the rehearsal was. It isn't like we were dancing and running around. We sat in comfortable chairs and read out loud. By the time we were finished, I wasn't sure what kind of sounds were going to come out of my mouth. The character uses lots of dialects. All mine sound like Dracula. When I tried to sing along with the music, I croaked. I'd like to say I wasn't bad for a first time back, but I was pretty bad. The drive home felt like a cross-country cattle drive. I climbed into bed and died for about fourteen hours. And for all that, I feel like a million bucks. It's great to be back doing what I love.
Still, this comeback thing is going to take longer than I thought. I can't wait to see how it turns out.
Peace,
Pennsy
Wednesday, September 8, 2010
#259: What the Old Timers Know
Today is my CT scan day. My brother-in-law is also having his umpteenth chemo treatment. I am amazed by his ability to take the punishment. I guess we all do what we have to do. He and his sweet wife B are off to Bowling Green for treatment this morning. God bless them both.
The head and neck cancer support group was much less scary yesterday. Several people commented on how much better I looked. It was a refreshing perspective. These folks haven't seen me for a month. When you are living day to day, it is easy to lose track of long term changes. They reminded me how really badly I was doing just four weeks ago. I was making progress without even realizing it.
Last month I was scared by the stories of people whose sense of taste took two or three years to get back to normal. Some people never get all the way back. Yesterday those same stories gave me hope. You can recognize the long time survivors because they are so positive and encouraging. Those of us closer to treatment are more worried, but the folks who actually make it for years are. The ones who keep hoping for the best. I talked a little about my anxiety, and hey just kept telling me, "You're gonna be fine." And I will be fine. Whatever the outcome of today's scan, I'll be fine. I'll still have great doctors and people who love me. I'll still have God, no matter how frustratingly silent God seems to be. And I'll still have this blog to share my story with people who need to hear it.
It's gonna be fine.
Peace,
Pennsy
The head and neck cancer support group was much less scary yesterday. Several people commented on how much better I looked. It was a refreshing perspective. These folks haven't seen me for a month. When you are living day to day, it is easy to lose track of long term changes. They reminded me how really badly I was doing just four weeks ago. I was making progress without even realizing it.
Last month I was scared by the stories of people whose sense of taste took two or three years to get back to normal. Some people never get all the way back. Yesterday those same stories gave me hope. You can recognize the long time survivors because they are so positive and encouraging. Those of us closer to treatment are more worried, but the folks who actually make it for years are. The ones who keep hoping for the best. I talked a little about my anxiety, and hey just kept telling me, "You're gonna be fine." And I will be fine. Whatever the outcome of today's scan, I'll be fine. I'll still have great doctors and people who love me. I'll still have God, no matter how frustratingly silent God seems to be. And I'll still have this blog to share my story with people who need to hear it.
It's gonna be fine.
Peace,
Pennsy
Tuesday, September 7, 2010
#258: Places to Go, People to See
There are events on the calendar for a change. This afternoon is the head and neck cancer support group. Tomorrow is my CT scan and then I have a rehearsal tomorrow night. Singing without teeth should be an adventure.
I'm apprehensive about the support group. The last meeting freaked me out a little. Lots of stories meant to be encouraging that made me feel worse. Sort of reminded me of the friend who said that AA meetings always made her want to drink. It's the one time that being around other people with cancer really scared me. People three and four years past treatment who still couldn't taste or swallow like they used to. People with hearing aids and dramatically scarring surgeries. It made me realize how much worse off I could have been, but also showed me that I'll probably be living with the consequences of this disease for a long time. When I got home that night I was as sick as I've ever been. I actually threw up in the yard, before I even got into the house. I'm hoping that tonight's meeting is a little less dramatic.
Tomorrow's scan, I've talked plenty about. It will just be a little ride through the big donut. The exciting part of that adventure comes on Monday when they tell me what they see.
The rehearsal is going to be a small one. Just me, the director, and one other actor going over some music (I think.) They are nice people and they know me, so I'm not worried about being judged or anything like that. Nevertheless, I'm very self conscious about my speech. I expect to be pretty frustrated by the sounds my mouth won't let me make yet. I've always been especially vain about my voice, so I guess this is going to be a real character builder. Still, I can't wait for the go ahead on the new teeth.
It's another beautiful day in the Bluegrass. The girls and I are getting ready to go spend some time in it. It will be nice to have some things to accomplish before I go back to worrying.
Peace,
Pennsy
I'm apprehensive about the support group. The last meeting freaked me out a little. Lots of stories meant to be encouraging that made me feel worse. Sort of reminded me of the friend who said that AA meetings always made her want to drink. It's the one time that being around other people with cancer really scared me. People three and four years past treatment who still couldn't taste or swallow like they used to. People with hearing aids and dramatically scarring surgeries. It made me realize how much worse off I could have been, but also showed me that I'll probably be living with the consequences of this disease for a long time. When I got home that night I was as sick as I've ever been. I actually threw up in the yard, before I even got into the house. I'm hoping that tonight's meeting is a little less dramatic.
Tomorrow's scan, I've talked plenty about. It will just be a little ride through the big donut. The exciting part of that adventure comes on Monday when they tell me what they see.
The rehearsal is going to be a small one. Just me, the director, and one other actor going over some music (I think.) They are nice people and they know me, so I'm not worried about being judged or anything like that. Nevertheless, I'm very self conscious about my speech. I expect to be pretty frustrated by the sounds my mouth won't let me make yet. I've always been especially vain about my voice, so I guess this is going to be a real character builder. Still, I can't wait for the go ahead on the new teeth.
It's another beautiful day in the Bluegrass. The girls and I are getting ready to go spend some time in it. It will be nice to have some things to accomplish before I go back to worrying.
Peace,
Pennsy
Monday, September 6, 2010
#257: Rather Be Flying
Seven days more and the wait will be over. On Wednesday I have the first CT scan since treatment ended. Next Monday I get the results. They will tell me if they see any cancer still in there. The waiting is driving me crazy.
I've been doing a lot of very esoteric reading. Reading about Mormonism and Masons and Theosophy and Hinduism. It's as if I'm searching for meaning somewhere else. My own life is so stuck in limbo right now. I have always stubbornly sought my own answers, but right now I would love for someone to tell me what it all means.
Last night I dreamed I could astrally project my consciousness. I left my body and flew around the world like a ghost or a magician. Nothing about my physical being mattered, not cancer, not being tired. I wasn't afraid of being sick or dying. I just flew, free and strong. I was pretty disappointed when I woke up. Turns out that the laws of space and time still apply to me.
I've been having these crazy paranoid thoughts. What if, after all this, I beat cancer and I'm not a better person for it? What if I'm the same selfish, frightened person I was back in April? Back when I was really sick I was sure that I was becoming someone different. Someone whose priorities had changed. But what if that was just a delusion to help me get through all that misery? Would that mean my cancer had no purpose, no meaning? Should it?
Part of me wants to hope that it will all be over soon. I'll sit in the examining room and the doctors will say that I'm all better, I can get the PEG tube out of my belly, get dentures for my mouth, start lifting and running again. Stop being afraid. Start being a new man. I want to hope for the best, but I'm afraid of how I'll react if I don't hear all that.
What if they tell me it's back or it's moved or it's worse? What if I need more chemo or have to do radiation again? I was diagnosed on April 16. Almost five months. It feels like such a long time, but I don't guess it is. Not really. Lots of people battle cancer for years. Will I? Can I?
See why I'd rather sleep? Life is much better when you can fly. I don't know what's coming, but I do know something is going to change in seven days. I hope it's me.
Peace,
Pennsy
I've been doing a lot of very esoteric reading. Reading about Mormonism and Masons and Theosophy and Hinduism. It's as if I'm searching for meaning somewhere else. My own life is so stuck in limbo right now. I have always stubbornly sought my own answers, but right now I would love for someone to tell me what it all means.
Last night I dreamed I could astrally project my consciousness. I left my body and flew around the world like a ghost or a magician. Nothing about my physical being mattered, not cancer, not being tired. I wasn't afraid of being sick or dying. I just flew, free and strong. I was pretty disappointed when I woke up. Turns out that the laws of space and time still apply to me.
I've been having these crazy paranoid thoughts. What if, after all this, I beat cancer and I'm not a better person for it? What if I'm the same selfish, frightened person I was back in April? Back when I was really sick I was sure that I was becoming someone different. Someone whose priorities had changed. But what if that was just a delusion to help me get through all that misery? Would that mean my cancer had no purpose, no meaning? Should it?
Part of me wants to hope that it will all be over soon. I'll sit in the examining room and the doctors will say that I'm all better, I can get the PEG tube out of my belly, get dentures for my mouth, start lifting and running again. Stop being afraid. Start being a new man. I want to hope for the best, but I'm afraid of how I'll react if I don't hear all that.
What if they tell me it's back or it's moved or it's worse? What if I need more chemo or have to do radiation again? I was diagnosed on April 16. Almost five months. It feels like such a long time, but I don't guess it is. Not really. Lots of people battle cancer for years. Will I? Can I?
See why I'd rather sleep? Life is much better when you can fly. I don't know what's coming, but I do know something is going to change in seven days. I hope it's me.
Peace,
Pennsy
Thursday, September 2, 2010
#256: No Giving Up
OK, first some good news. It's been a day and a half since I last used the feeding tube. I'm finally able to stand the taste of my protein shakes. I may lose some weight, but at least I'll be ready when it comes time to pull it out. The rules are that I have to be off the tube for two weeks, have to maintain my weight, and have to be healthy enough that further treatment is not likely. The last part is out of my hands, but I can at least put the PEG tube behind me. I feel a lot less like an infant when I don't have to ask to be fed, which is a bonus.
It's a little bit of an exaggeration to say I can stand the taste of these shakes. The truth is that most everything still tastes terrible. I've just decided that it doesn't matter what stuff tastes like. I have to learn to eat again. All I can do is hope my taste is back to normal before I try my first slice of pizza.
Now the girls are going to take me for a ride. I have given them every reason to write me off over the past few days, but neither of them has the courtesy to give up on me. Good to have people around who don't get sick of trying.
Peace,
Pennsy
It's a little bit of an exaggeration to say I can stand the taste of these shakes. The truth is that most everything still tastes terrible. I've just decided that it doesn't matter what stuff tastes like. I have to learn to eat again. All I can do is hope my taste is back to normal before I try my first slice of pizza.
Now the girls are going to take me for a ride. I have given them every reason to write me off over the past few days, but neither of them has the courtesy to give up on me. Good to have people around who don't get sick of trying.
Peace,
Pennsy
Wednesday, September 1, 2010
##255: The Waiting is the Hardest Part
What was once a daily joy has become a weekly chore. I miss blogging, but then I've been missing just about everything lately.
While I was warned about how difficult radiation and treatment would be, I have to admit I was totally unprepared for this ordeal of waiting to find out if they worked. It's still a week till the CT scan and almost two until the appointment when we get the results. Meanwhile every itch and tingle convinces me that the cancer is back. A few weeks ago I couldn't conceive of that possibility. Now I'm obsessed with it.
Everything irritates me. Conversation works my nerves. Silence depresses me. Watching TV feels like a waste of time, so I put on the headphones and watch YouTube. Walking makes me happy, so I stay in bed till noon, when it's too hot to go out. Nothing I'm doing makes sense.
Part of what I'm going through is depression, but mostly I'm scared shitless. I told Mum yesterday that I think I'm sleeping just to avoid being awake.
We've had some rough news this week. My sister's brother-in-law passed away suddenly. A friend was diagnosed with cancer. People I love and care about have much bigger problems than mine. My God. Is that the problem? Am I upset because I'm not the center of attention any more? How hideous is that?
See why I'm not blogging much? I bore myself with all this complaining. I certainly wouldn't want to read about it online. I'll try to find something more interesting to write about tomorrow.
Peace,
Pennsy
While I was warned about how difficult radiation and treatment would be, I have to admit I was totally unprepared for this ordeal of waiting to find out if they worked. It's still a week till the CT scan and almost two until the appointment when we get the results. Meanwhile every itch and tingle convinces me that the cancer is back. A few weeks ago I couldn't conceive of that possibility. Now I'm obsessed with it.
Everything irritates me. Conversation works my nerves. Silence depresses me. Watching TV feels like a waste of time, so I put on the headphones and watch YouTube. Walking makes me happy, so I stay in bed till noon, when it's too hot to go out. Nothing I'm doing makes sense.
Part of what I'm going through is depression, but mostly I'm scared shitless. I told Mum yesterday that I think I'm sleeping just to avoid being awake.
We've had some rough news this week. My sister's brother-in-law passed away suddenly. A friend was diagnosed with cancer. People I love and care about have much bigger problems than mine. My God. Is that the problem? Am I upset because I'm not the center of attention any more? How hideous is that?
See why I'm not blogging much? I bore myself with all this complaining. I certainly wouldn't want to read about it online. I'll try to find something more interesting to write about tomorrow.
Peace,
Pennsy
Subscribe to:
Posts (Atom)