Wednesday, June 30, 2010

#209: Halfway Through My Treatment!

OK, three weeks down, three weeks to go! I've made it to the turn. I had a great morning, though I admit I'm slowing down a little right now. It's a great day.

I have deliberately been avoiding looking too far ahead or back. I don't want to lose track of where I am. I can't really afford to get lost right now. Mrs P does the weeping and worrying for both of us right now. Today, I am definitely looking forward. Three weeks. I can't imagine anything I can't take for three weeks. Of course, there may be things coming that I haven't imagined. Hope may be a virtue best practiced in moderation right now. I still don't know what that second Chemo treatment has in store for me. Still, I see promise in July.

July is always a good month for me. The sun moves out of the sign of Cancer in July, and into my birth sign, the Lion. Mum and I both have birthdays this month. Deb S and I even share a birthday. This year, that will be a week after my last radiation treatment, even more to celebrate. Summerfest, the outdoor theatre festival I have loved so long will open soon and I don't want to miss a show. Summertime in Kentucky is at it's best. The rains of June have passed, and the dry brown of August hasn't yet come. We'll drive through the Bluegrass and shout "moo" to the cows and whisper "ahh" at the horses and sneeze at the goldenrod - inexplicably our state flower.

When I imagine the time to come, I imagine hours spent in rehearsal, doing what I love. I imagine travelling to see our family in Pennsylvania and Kentucky and Carolina and Colorado. I imagine visiting the people who have loved me so in Washington and Baltimore, New York, Chicago and LA, Ohio, Missouri, Tennessee and Texas. I am such a rich man, rich in marriage, rich in family and friends, rich in life. I want to spend the rest of my days loving my treasures. I treasure you, even though we may never have met, may never meet.

The struggle isn't over. I'm not stupid. This July may be only the beginning. Cancer can be a slippery adversary. But we'll let tomorrow's troubles wait for tomorrow. Today I feel great. The AC is off, the windows are open, and life is good.

Three weeks down, three to go.

Peace,
pennsy

Tuesday, June 29, 2010

#208: My Visitors

I dreamed you came to visit me last night. I knew you at once, though you were not what I expected at all. Handsome and tall with an expensive looking suit. More like a fashion model than an undertaker. There you stood in my door, in all your GQ glory. Cancer. Smiling.

"I caught you, you bastard," I hissed. "You tried to sneak up on me, but the doctors found you, and now you are going to die."

"One of us surely will," you said, smoothly. Such confidence in your eyes. "I think you will die first."

"I'll die killing you," I spat, wondering where the courage was coming from. This was a cold killer. He had taken so many of my family. "You don't decide when I die. I decide."

"No," came a voice that made your face go pale and my skin prickle with goose flesh. "I will decide."

There behind you he stood. Unlike you, Death looked exactly as I expected. Dark, deep eyes in a face of papery skin. Cold fingers. Just as Dickens painted him. "I will decide when you will come. But both of you will come."

You gathered your courage. "Dark one, I have cheated you many times. If you take me from this one, my kind will just spring up for a thousand thousand others. Kill me in his head, I will be in his guts. Kill me there, I will take his lungs or his blood. Simple answers are best, yes? Take him and let me continue elsewhere."

"Death," I whispered. "You will come for me one day, but not today. Not while I lay in my bed. Come when I am running or playing on a stage. Come when I am holding my sweet wife in my arms or driving down a beautiful country road. This thing, this Cancer is unworthy of either of us. Come when my death might bring glory to god or peace to another soul. Don't let this liar do your work for you. He creeps in and devours life in secret. You are ancient and honorable. You come with your fearful face revealed, your bony hand outstretched. He is a thief without honor. You are the servant of God."

In silence, Death turned to Cancer to hear his response. He brushed a bit of lint from his lapel. His smile was no longer arrogant, but cold and sharp. "How old are you?"

"I'll be 50 in July."

"And what do you weigh?"

"I weighed 359.9 lbs this morning."

"And a healthy weight for a man your height and age would be?"

"Maybe 210, 220 lbs."

"Now you have lost quite a bit of weight since I first called on you. Isn't that true?"

"40 lbs."

"40? Why that's the weight of a small child! Isn't it? You have lost the weight of a small child and still exceed your own healthy size by the weight of a grown man. Isn't that true?"

"Yes."

"You smoked?"

"Years ago. From the time I was 20 until my 36, 37th birthday."

"Your father smoked. Your uncle smoked. Your grandfathers smoked. All were dead before they could retire. Is that right?"

"Yes."

"You drink?"

"Very little."

"But you drink. You have drunk."

"Yes. There was a time in my life when I was drunk quite a lot."

You took a step back then, raising your hands as if to question me more would be cruelty. Turning to Death, you said, "Dark One, from his own mouth, with his own life he has convicted himself." Then to me, the coup de grace, "You have been inviting me to kill you since you were a child, isn't that true? Every step of the way, you chose that path that led to me. Now you call me a trickster and a sneak. That is unjust, sir. No generation has had better warnings than yours, yet you continue to flock to my kind with your headphones in your ears and your noses in your cellular telephones. I did not seek you out. You sought me, knowing what I was, and now you blame me for your own disregard for your life."

Your voice never rose above a whisper, like you were accustomed to winning. Death turned to me, expressionless. What could I answer? "Death," I began, "I am not perfect. No man is perfect. I have done stupid, cruel, destructive things with parts of my life. But I have also tried to do Godly things. To help the poor, visit the sick and imprisoned. I have shared what I have and gathered up precious little treasure on this earth. I am a sinner, wicked as any who have brought corruption to God's creation. But I am also a creature, made in God's own image. I have spent my days learning what it means to live as a child of God. Let me learn what it is to die as a child of God. Wait for me a little longer, until I know what my Creator wants from the end of my life, so I can serve him right up until the moment of my death. This Cancer does not delight in God's creatures, but only in their destruction and perversion. He twists life into death so we must practically kill ourselves to be rid of him. He does not serve our God in heaven. He is nothing but a disease."

At this, death turned his empty eye at you, but you did not speak. Your confidence was gone, your clothes faded. The smile became a sneer on your red, pock-marked face. I watched in silence as you showed  your true self. A giant tumor all bloody and viscous. Then Death spoke.

"It is well said that this man has invited Cancer into his body by a long pattern of behavior. It is also well said that Cancer is not part of God's plan, but rather a disordered corruption of creation. The truth is, neither of you deserves to live. Still, it is God's nature to temper justice with mercy. No one will die tonight. But one of you will surely die. You both face a great trial. Fire. Chemicals. The sword. The first to cry "Yield." will come with me."

Then Death turned to Cancer and an icy wind seemed to fill the room. "But you, Cancer. You will die in any case. If you kill this man, you will die with him. If he kills you, you will be cast into oblivion. Your fellow demons may torment humankind, but you will not be among them."

 "In that case," the hideous tumor growled, "I have nothing to lose. But you," he cast a gnarled eye in my direction, "You will be my final victory. I will kill you."

At this, Death left us for a time. You left me too, though I can feel your presence always. You choke me awake at night. I laugh you to shame in the daytime. My doctors are filling me with the poison that will kill you before you can beat me down.

Death was right. We will both die, one way or another. But you Cancer, you're going first.

Pennsy

#207: Not an Easy Morning

Not an easy morning, this one. Woke up at 3:00 determined not to go back to sleep. My mind rushed from one thing to another as if I had forgotten my Ambien. That little wonder-drug usually helps me get past those kinds of nights, but not this time. Not even a football match between Holland and some other country in white shirts was enough to put me to sleep. This in spite of the riveting action of two scores in an hour and a half. Soccer makes me feel like such a dolt. I'm obviously missing something. It is impressive that they always seem to kick the ball just where they want it to go. I couldn't do that.

After I turned off the TV, I went back to bed and let my brains race some more. I went over old jobs. Projects I had worked on years before. A letter to the editor. A political screed I wanted to post on one of my favorite message boards. Pure craziness. The sun finally came up and Mrs P started giving me medicine. I started with the new "swish and swallow" brew that numbs every part of my mouth except the places that hurt. Then I tried to take some pills. I couldn't tell if I had swallowed them or not. Kind of a foolish position to be in, actually. I kept drinking water and swallowing, but the numbing stuff left me sort of senseless back there. I knew something was uncomfortable, but couldn't tell what. As a result, Mrs P decided to crush the remaining pills - one of which is the size of a new-born's foot - and mix them up in some water so they could squirt through my PEG tube. That's how I'll be taking pills for a while. No more swallowing anything solid. Finally we did the little half teaspoon of thrush potion. The giant antibiotic pill should be firing up the thrush on my tongue again any minute.

So that's how the day started. We drove to the vet first, to drop Mo off for an ultra-sound. He has something queer going on in his tummy and the doc wanted to rule out the really bad stuff. Then we went to radiation. I managed to throw up during the short wait for my treatment. I can't even express how glad I was to do that before they bolted the mask on. Funny thing when you throw up around a bunch of radiation patients. Everyone just sort of takes it in stride. We've all "been there/done that." When I returned from the restroom with that pale, cold sweaty look, everyone just smiled and nodded. The lady next to me asked "Y' ok?" "M' ok." I answered, and we all went back to our magazines. You've got to be pretty bad off to get a room full of cancer patients excited.

I keep snapping at Mrs. P, which I hate. She's not much of a fan, either. I get so frustrated sometimes and I take it out on the stupidest things. A missed turn in the car. A glass in the living room. Nothing important. I know that this is part of the disease and all that, but I hate that she bears the brunt of it. When I think about it I can stop myself, but when I'm not thinking it just comes out of me. So unfair to her. As if life wasn't screwing her enough already.

Back home at last. I laid down and she gave me my 10:00 feeding. Sounds like a baby. I have to take a can of Ensure every two hours or else I'm going to start losing weight again. Lost a pound since yesterday morning which is very bad. They will put me in the hospital and start pumping bacon grease into me if I can't keep my weight up. This is the craziest thing. I am now down to the weight I was when I was running 5K races. Maybe I can use that as a head start when I start running again in the fall. For now the walk across campus at the cancer center has me soaked with sweat.

After my can of nutrition, I closed my eyes and Mrs P curled up next to me for a nap. These are the best parts of the day. She held me until I fell asleep, then crept out of bed to do some cleaning up. She is my angel.

I'm hoping the day stays pretty ordinary from here on out. I'm gonna shave my head. Take a shower. Maybe read a little. It's only 82 degrees out. Maybe I'll go sit in the shade later and make some phone calls. To be honest, I'm a little bored with myself today. Can't imagine reading about it is much better than living it. We'll talk again tomorrow.

Peace,
pennsy

Monday, June 28, 2010

#206: Change in the Treatment Plan

I saw more doctors today than I did all of last year, I think. One of the things I didn't know about cancer treatement is they you don't actually have a doctor, you have a team. There's the surgery team, the radiation team, and the chemo team. Before I started at Markey Cancer Center the surgeon was the lead, along with nurses, nurse practicioners, radiology techs, my family doctor. Once the surgery was finished, it was off to the big leagues with a medical oncologist, oncological nurses, med students, nutritionist, pharmacologist, on the chemo team. Then on the radiation side there's the radiological oncologist, physicists, nuclear medical technologists, associates, residents, med students, and the nurses and nurses assistants who weigh me, draw my blood, check my history, and generally make me feel better. I think I was touched by 15 different medical professionals today. They palpated my neck, drew blood, shined lights down my throat, I don't know what all else. Mostly, they encouraged me. We're almost half-way through, and I'm doing great.

The bad/good news is that my white blood cell count is a little down. That combined with the chills I've been experiencing had them concerned enough to postpone my chemo until Saturday. They were concerned that this might disrupt my independence day celebrations. Screw that. I'll celebrate when I can eat brats again. Meanwhile, it's back to the radiation table. The good news part of this equation is that they are eliminating my last chemo course. I'll be having only this one on Saturday, then the radioactive team will bring it on home.

I learned a few things about my throat today. What I have is called "mucosal denudation." Mucosa is the slippery skin inside your mouth. Well inside most of you, actually. Denudation means what it sounds like: stripping away. What's happening to my throat is that the skin is cooking away because of the radiation. It's as if I had sunburn on the inside. That's why my throat only hurts when I use it. Swallowing is like rubbing two sunburned arms together. They gave me some analgesic mouth rinse to use, and also some more antibiotics to try to get my blood counts back in order. I think that's all the new meds. It's a little hard to keep track. I'd be lost without Mrs P.

Someone from Tennessee sent me a lovely gift today, a CD that I'm enjoying right now. Trouble is, I don't recognize the address or the signature. I'd love to thank you personally, but if you'd rather not, I'm thanking you here.

#205: RAD16, CHEM2, Pennsy Edgy Before Big Game

I'm awake early today. This will be my 16th day of radiation, 2nd of chemo. I know that the best part of my treatment is over and that things are going to get harder from here. I feel like I'm writing one of those letters that soldiers send their girl friends the night before a battle.

Today won't be hard, particularly, nor will tomorrow. Mostly I'll just be taking in fluids and peeing them back out. The old toxic waffle face shtick. After that, I'm in uncharted territory for me. The sore throat seems to be spreading. We'll be increasing the proportion of meals that I take through the tube, now. The docs have got me so worried about losing weight that it kind of makes it harder to eat, if that makes sense. Oh, of course it doesn't make sense. But my throat is becoming a very difficult passage to use for taking in nutrition and medicine. I can still take pills one at a time, but it is painful.

I'll see the whole team today. Medical oncologist, nurse oncologist, chemo infusion team, radiation oncologist, RAD techs. Sounds like a full agenda, but then, there's lots of time to kill. Two litres of fluid, a bag of poison, then two more bags of fluid. A trip to the radiation table worked in there. About six hours all together. All aiming to kill everything in my body except me. Three thousand years of medical science and that's still our best answer. Go figure.

The hard part about seeing all these docs at once is keeping all the lists straight. Lists of meds. Lists of side effects. New symptoms and complaints. Everybody's names. Jokes for the nurses. It is a sizable database. Fortunately, Mrs P is the better part of my brain and helps me keep my arms around the facts.

This weekend we walked around the stage at the arboretum where Lexington's summer theatre festival will play in a week. My heart ached to be up there with them. I so regret the hours I have spent away from the stage, not doing what I know I was created to do. When I'm back on my feet, I swear I won't make that mistake again. I'll be playing on some stage somewhere before another year has passed. Nothing else makes sense. Meantime, I can't wait to see the people I've loved and worked with sink their teeth into The Merchant of Venice, Pride and Prejudice,  and RENT in the coming weeks. I hope I can drag my big green plastic Adirondack chair out to the hill to see every one of them.

Time to get ready for battle. Bath. Pills. Breakfast. Funny hat. All systems go.

Peace,
pennsy

Sunday, June 27, 2010

#204: Yuck. (Not for the Weak Stomached)

Didn't make it to church today. I was feeling a little weak, and Mrs P made an executive decision.The sore throat that the radiation doc promised has arrived, and my soft palate feels like I'm rubbing it with sandpaper whenever I swallow. Last Sunday I went and sang my heart out. This week, I can still talk, but the throat feels like it could blow up any minute. I'm not intending to gripe exactly, but I've been pretty open about everything else so far, and who knows but some future survivor might stumble on this and need to know that they're not alone.

See, the trouble with not being able to swallow is that the RAD is cooking my salivary glands. Turns out you have two kinds of saliva, thick and thin. I seem not to be making the thin kind any more. That means that the back of my tongue is coated with (sorry) this thick slime all the time. Clearing it out, either forwards or backwards is a necessity and an impossibility. I can't hock it out and I can't swallow it because either one makes the soft palate feel like it is on fire. The best I can do is slosh some water around in there to try and break it up.

This by the way, is the cause of my only real throwing up. Not my stomach, but my gag reflex. This conversation is now so disgusting that I'm going to find something else.

OK. A list of things I like better than throwing up.

God
Jake
Mrs P
Mum
My blog
Folks who leave comments
Facebook
Twitter
Reading Barbara Kingsolver
Articles about the Steelers that do not mention serial rape
Old photos
Visits from friends
Walking in the sunshine
Running
Dreaming of cheeseburgers
Jimmy Buffett
Being a wise guy
Knocking a wise guy down a peg
Sailboats
The woods

Oh, that reminds me. I read a great book by Bill Bryson called A Walk in the Woods. It's about a summer spent hiking the Appalachian Trail and it is funny as all get out. It is also a love song to the Trail and the mountains that give it its name. The author reads, and insists on pronouncing "ap a LAY shun," but he loves them so much that a Pennsyltuckian can forgive the mistake. It was a gift from a childhood friend and I loved it. It makes me want to get out in the woods again as soon as my wind is back.

So there, you see. There are nice things to think about when you have cancer, too. Which is good. Cause I'm actually feeling a little queasy right now.

Peace, (urp)

pennsy.

(That's "ap a LATCH un" by the way.)

Saturday, June 26, 2010

#203: The Chance of a Lifetime

I had the chance of a lifetime yesterday. A man who hurt me badly was at a party I attended. I expected him to be there, but didn't know how I would react. A few months ago, I might have avoided him, remained aloof, come up with some snide, passive-aggressive snark to shoot his way. I have laid awake hating him, hating myself for my ignoble feelings. When we pulled up to the house, I saw him walking in. I wanted to turn and go home. Didn't want to embarrass our host. Didn't want to face the ugly feelings I harbored.

When we came into the yard, he and I made eye contact almost immediately. We weren't sure what to do. I spoke to some folks who were nearby, some who approached to comment on my weight loss, my hair loss, my blog, my health. You could tell they knew how much I love being the center of attention, and I was grateful to them for indulging me.

Next thing I knew, he was there in front of me. "Hiya Bob," his hand extended. I felt as if I stood on the edge of a cliff. It was the chance of a lifetime.

I threw my arms open and he stepped into them. Hugging is one of the things I do best. People like hugging me because I'm big and squishy, like a mammy. We embraced for a long time. "It is so good to see you," I told him, meaning it with all my heart.

"Good to see you, too," he answered. "Can I get you something to drink?" He brought me a Sprite and we chatted for a while under an umbrella. Then he was off and I held court for a while, doing my best not to upstage the guest of honor.

There are very few things in this world that feel as good as forgiveness. either received or offered. It was kind of him to accept what I gave him. I imagine God feels this way when we accept his forgiveness. When I try to picture what it will be like to meet my Father in Heaven, I think of lots of different scenes. Will I fall on my face, waiting for permission to rise? Will I run to him in gratitude? Will I wait for introductions? Will I tremble in fear?

Or just open my arms in thanksgiving when I hear the words, "It is so good to see you." Is that what forgiveness will be? A whole-hearted acceptance that needs no comment, just a long hug like a mammy's, soft and big and uninhibited by the presence of others? Will it feel as good to God as it feels to me? I could live with that.

Now that will be a party. Of course, I'm hoping to have some teeth by then. The smell of fried chicken was exquisite torture last night.

Peace,
pennsy

#202: Visiting Hour at the Hospital

I took a trip on my own today. First time  I've driven alone since April. I felt like a grown-up. I went to visit my friend C who thought he was having an asthma attack and wound up diagnosed with little bitty blood clots all over his legs and lungs. He's pretty lucky, actually. If they were a little less tiny,  they would be coronary emboli and he would be in a much colder part of the hospital.

We sat and visited, C and his sweetheart L, and I. We compared ailments like old men, and laughed about how things change when death is around. "I realize now that there's dying and everything else," he said. "It really is all small stuff." I never believed that before, either. My problems all seemed so real and important. Now I know differently. We hugged and talked about things like sugar and steroids and tubes and short walks. It was a nice time. I started to tire, which C noticed before I did and he thanked me for coming. L walked me to the elevator. She's doing OK too, though in some ways it's harder on her than on C. He's a scientist and is kind of digging all the technology of what they're doing to him. She just wants him to be better and could live without the waiting. Mrs P and I know how they both feel.

I stopped on the way home and got a car wash. The Honda has been sitting idle for a long time. Apparently the grackles have been having some sort of a contest. They are very good shots. I got an Ale-8-One and watched the big red wheels turn around, scrubbing. The pop tasted pretty bad on my crippled tongue, but it does a great job of cutting the gunk in my throat. The car wash did a terrible job. I wound up cleaning all the windows again myself, and used the squeegee from the pumps to get the last of the poop off of the hood. Lord knows what effect that will have on my paint job. Think I'll wait for the next rain and then try a more thorough car wash.

It's a beautiful day in the Bluegrass. 86 degrees and just hazy enough to keep the sun from cooking you. These are the days when I used to love rehearsing in the park, slathered in sunblock, everyone in dark glasses and floppy hats, speeding through Shakespeare as fast as we could so we could get back to the shade and the ice chests full of water. There is something so right about playing Shakespeare out of doors. I remember touring The Tempest all those years ago. We played some beautiful theatres and fabulous old opera houses, but the best time I ever had with my favorite of his plays was on a platform in the middle of a field in Letchworth State Park in upstate New York. The field was on the edge of a canyon and the ham-bone in me soon learned how to play with the echoes from the other side of that fabulous feature. We played to about three thousand people that night and it felt like walking on the moon. My Prospero was never better.

It is apparently nap time at our house now. Jake is on the floor next to me snoring. Mrs P is on the guest bed behind me doing the same thing. Peaceful day. I don't want to miss a second of my last weekend before chemo on Monday. I've learned to treasure these hours. Hope you get a chance to treasure some, too.

peace,
pennsy

Friday, June 25, 2010

#201: My Friend Has a Blog

Well, several of my friends have blogs, actually, but one has gone out of her way to send readers to Fat Man Running, so excuse me if I do a little logrolling.

Katie is a fourth year medical student who has been blogging about her experience, including a hiatus between 2nd and 3rd year to have a baby. She is a remarkable woman, mom, and healer whom I would love to have for my doc, though I have a feeling she's going to wind up doctoring "lady parts." Her blog is remarkable for its intelligence and compassion. She also opens a window into a world, medical school, that most of us never see. She puts human skin on the super human task of med school, motherhood, and in her spare time, being a doctor's wife. She's a marvel and her blog will make you smile.

While we're at it, bill felty is giving Perez Hilton a run for his money. His insights into contemporary culture are quick, sharp, sometimes just a little bitchy, and always funny. Whether he's talking about some celebrity slattern, or just big fat white people lolling about on cruise ships, bill always lifts my spirits.

Charlie, keeps his running life fueled with coffee which given his energy level, isn't that surprising. I've know him for many years. We met on a Motley Fool discussion board where folks spend most of their time showing off talking about things they don't really understand. Still, I admire his running career. I've followed him through injury and recovery, questions about career and love, and now his move from the greatest city in the world, Chicago. He's followed me through my first 5K, my loss of 50 lbs, and now my career as a cancer survivor. Charlie gives of himself to people learning the sport of running, and has a marathon or two under his belt as well.

For sheer courage, I turn to Andrew. His blog, The 4th Avenue Blues tells the story of his life with the dual diagnosis of substance abuse and mental illness. Andrew hides nothing. He is as candid about his life with schizophrenia as I try to be about my cancer. Andrew has struggled with drugs, with booze, with homelessness, and with just about everything involved in "normal" everyday life. And through it all, he writes with love and clarity about the people who care about him and his own victories and defeats. Andrew writes the most real blog I've ever seen. I can't wait to read him everyday.

Finally, two blogs that keep me up to date on what's going on here in the Bluegrass. Both are written by local arts journalists, but from very different points of view. KimmyVille is up close interviews with local artists. Kimmy has a way of making you feel like you know her subject yourself by the time she's finished. She brings a keen ear and careful craft to the business of blogging and is a pleasure to read. Rich Copely writes Copious Notes, a compliment to his own work as the arts and cultural maven for the Lexington Herald-Leader. Rich is that rare arts writer who rarely sounds like he doesn't know what he's talking about. He's a good critic, except when he reviews me, and he is comfortable writing about just about anything from grand opera to contemporary Christian music. Not many people can make a Backstreet Boys concert seem compelling, but he can do it. He also has a knack for covering local teapot tempests with just enough gossipy dirt to keep them interesting.

So there. Go visit some good blogs this weekend. There are good writers everywhere. There's a particularly good one napping on the bed next to me right now, but I don't want to be accused of nepotism. In spite of that, I'm telling you that Mrs P is the real writer in our house and I don't care who knows it.

Peace,
Pennsy.

#200: Dancing in the Moonlight

I dreamed we danced last night
Young, strong
Our bodies damp with summer night
You sighed and gasped
Holding me tight
As if
I might live inside you forever

Your hands
Caressed my face, my arms
As your blue white skin
Pressed you to me in the dark
My touch
On your perfect roundness
Gave us both shivers
As we danced in the moonlight

A dream?
A memory?
No matter.
In the morning when I opened my eyes

My beautiful wife lay beside me
A love to last a lifetime.

Thursday, June 24, 2010

#199: Freezing in the Oven

Today we had a brief bout of barfing, followed by a long rest. Our friend V came to visit. He is a lovely man, an author and teacher who moved to New York many years ago with his sweetheart. We met here in Kentucky. The visit was pleasant. A chance to tell the story again. The shave. The lump. The surgery. He told us of his adventures educating the children of the well to do on the Upper East Side. We laughed hard and loved deeply. I started feeling kind of puny after a while, and excused myself. V and Mrs P visited a while longer while I napped, then he went back to his brother's house.

In my dream, I was in a hotel room, working busily on a computer of some kind. I say of some kind because the thing was obviously an amenity of the hotel. It was shrouded in a steel box with flimsy cables poking out the back. It was actually a pretty amazing piece of anti-theft equipment. As I worked, I noticed that my own computer, (one I have never owned, by the way,) was sitting next to the room computer. I thought I could disconnect the monitor from the hotel's CPU, connect it to mine, and have two monitors. This is a particular fetish of mine and a luxury I have loved on the few occasions it has been possible. I was on my belly, puzzling over how to disconnect the shrouded cable connections when I started shivering.

I was awake with a start. The dream was over. I was in my running shorts and a tee shirt and I was freezing. It was 85 degrees outside, couldn't have been less than 78 in my room. I was in agony. I jumped under the sheet and called for Mrs P desperately. Alarmed, she started piling blankets on top of me. On when Mum's crazy crocheted hat. More blankets. Finally, I begged her to turn off the air and open the windows of our bedroom. That did the trick. The hot summer air rushed over my face, though my arms and legs were still chilled under the covers. She prepared a tube feeding for me and gently squeezed me full of vanilla calories. When I felt up to it, I made my way to the back porch and sat in the shade for a while, soaking up the heat as fast as God could dish it out. The Lord taketh away and the Lord giveth. Blessed be the name, I guess.

Finally, I decided to go for a walk in the sun. Mrs P bought me an enormous straw hat at the store today and I pulled on my blue jeans, donned by plantation owner's chapeau, and took my afternoon constitutional around the long block on which our house sits.

This is farther than I've walked before by more than twice. By a strange accident of city planning, our subdivision sits in a sort of pie shaped plot between three major roads. Our block is on the point of that pie piece, and I walked the whole thing. I don't know how long it took me, but by the time I got home, I was soaked with sweat. I shut the windows, turned on the air, and flopped back down on top of the covers so as not to soak my sheets. The chill had passed.

It is a strange feeling when your body runs away from you like that. Not helpless, exactly. More like puzzled. Where in the world did this come from? It is the second time I've experienced it, and it always follows one of those retching trips to the bathroom.

After I recovered, I sort of stared off out the window, bewildered. The phone rang and it was Dee, my oncology nurse. She calls every now and then, just to see how I'm doing. I can't tell you how much comfort I draw from these calls. I told her about my spell and she seemed unperturbed by it. This made me feel a lot better. I would hate it if I described anything to her that took her by surprise. Much better to have normal reactions in this most abnormal of circumstances.

Mom called. She had read my last post, shaking my fist at God. I expected her to be wondering if I had been struck by lightening or lost my mind. Instead she was deeply concerned to learn what the doctor had said about Mo's trip to the vet. Mrs P filled her in on the details. I was grateful for the chance not to be the center of the universe for a while.

peace,
pennsy

#198: Hey, God. Back Off, Huh?

There is a kind of aloofness to cancer. When life is so close to death, it is hard for day to day things to get your attention. So many things are done for me now. Mrs P takes care of my meds and food. My short term disability check from work shows up on Thursday, direct deposited into the bank. I take a pill at bedtime and am put to sleep. I take a bath in the morning and am driven to the hospital. Staying alive is my full time job. Whatever doesn't threaten that has a hard time getting on my radar.

So when the Honda had to go to the shop, I didn't really think about it much. Our mechanic, Paul had decided that the problem was beyond his expertise, and sent us to a Honda man whom he trusted. Stevie did all he could to find something easy to fix, but we wound up replacing the cylinder head on our little CRV. I had ignored the engine light for too long. Stupid, but we were broke and anything would have been too much money to fix the car last winter. We spent more money than I paid for my first two cars getting the Honda back on the road. Thanks, AFLAC.

In the Laurel and Hardy spirit of the day, as we were driving both vehicles home, my phone rang. It was Mrs P calling from her Malibu. The Chevy's engine light had just come on. I didn't know whether to shit or go blind. Instead, we called Paul and made an appointment to have him read the code on Friday morning. Thanks, AFLAC.

When we got home, Mrs P went downstairs to put some laundry in the dryer. She called to me, frightened. Our little cat, Mo had been sick in several places downstairs. He hasn't been eating right, and is very tiny to begin with, so losing weight is serious stuff for him. We've lost three of our animals in the past few months. Losing Mo is not something either of us is prepared to deal with right now. We called and made an appointment with the doc. His regular vet is on vacation, but the sub had very little hopeful to say. "It could be terrible possibility 'A', or terrible possibility 'B'."  We'll get an ultra-sound next week and see what else we can find out. Thanks, AFLAC.

This is all a lot to take in. Mrs P is devastated by the situation with Mo. The cars just make it worse. I find myself in the absurd position of being able to pay for all this because I have a cancer policy. To be honest, auto repairs are not what I had in mind for that money, but I'm grateful it's there. I feel like I should just ignore all the little things that come along, but these are not really little things. To be honest, its pretty hard not to feel like God is piling on.

My friend just had her divorce finalized. She feels like it's the worst year of her life. I know what she means. We've gone through a lot around here in the last two years. Laid off. Two failed career changes. Six weeks in a mental hospital. Taking a minimum wage job to keep from losing my mind again. Cancer. Losing Molly our beloved Golden, Sniffy the little orphan cat, and Buddy, the 22 year old Brooklyn street cat who moved to Kentucky with us in 1994. After all that, you just start to feel like God should lay off a little bit, you know?

I get really mad at him, sometimes. Especially when I see how much this is hurting Mrs P. She, of all people doesn't deserve this crap. She's dedicated herself to service for as long as I've known her. For eleven years she took care of animals and the people who love them as a veterinary assistant. She was so good at it that she decided to become a clinical social worker to help people deal with all kinds of loss. She has been married to this exasperating Pennsyltuckian for almost 21 years and forgiven more sins than most men know how to commit. She deserves a little mercy.

I used to pray for God to take away her suffering and give it to me. I actually DO deserve it. Instead he's played this cruel joke by giving me cancer and making things even harder on her. I hate this.

Last Sunday, the preacher talked about Elijah. The old prophet had done all he could do, embarrassed the priests of Baal, put them to the sword, shown that Jehovah God WAS God. What did he get? Ahab put a price on his head and he fled into the desert, laid him down, and waited to die. He prayed, "God, I did everything you told me to do and it hasn't changed a thing. Why don't you just leave me alone?" God told him, after a lot of godly rigmarole to get up, go back home, and finish his job. Nice way to treat an old man.

In a way, I envy Elijah. At least he had a job to do. It was a lousy job, but clear. You're a profit. Go make prophesy. What am I? That's my prayer to you God, as I sit here in my cave in the desert. Just what the hell am I supposed to be and what the hell do you want from me and what do I have to do to get you to leave the people I love alone?

I'm sure a more faithful man would have the answers to all this. Like I'm supposed to go feed the poor or make disciples or something, but it all seems a little vague. Especially when you compare it to a sick little cat or my wife's broken heart. I'd like a little guidance here, Mr. God, sir. If you can take a minute away from beating the shit out of creation.

It would be great if you were at least as helpful as AFLAC. Maybe you should get a duck.

Peace,
pennsy

Wednesday, June 23, 2010

#197: No Time To Waste

Wow. Now that's what I call a side effect. I was sitting here peacefully reading about my chemo drugs when BLAM, the pukes hit me like a bus. out of no where. I was surprised by a couple of things. First, the suddenness of their onset. Second, the emptiness of my stomach. Apparently a liquid diet moves mercifully fast through the stomach. And third, when I was finished I felt as if someone had removed all the muscles from my legs. I was weak as a baby, could barely stand. Wow.

A quick trip to bed was followed by chills, blankets, a hat Mum had crocheted for me, and more heaves throughout the night and into the morning. Thank God for Ambien.

This was kind of a reality check for me. I really can't plan for good days or bad days. Just have to take them as they come. After 40 years of acting, I'm finally learning what "here and now" really means. Cancer doesn't give you the luxury of looking ahead. Especially when you're at the coin-toss level of prognosis. Doc says I have a fifty-fifty change of seeing my 55th birthday. We'll 50% is a lot. But there's a 100% chance that I'm alive, awake, and not throwing up right now. I'll have to settle for that.

I've been working at getting to know the other members of the radiation club, a group of four families who happen to be in the waiting room as the same time every morning. There's the lady from West Virginia who is staying here with her husband while she gets treatment. She doesn't have any teeth either. Gum Cancer. Never smoked. Never drank. She is sweet, but very afraid. There's the middle aged couple who have a farm outside of town. She loves her animals in the way that only a farmer can. They take them to vacation bible school and show kids what Jesus was talking about when he spoke of sheep and goats and pigs and such. Then there's the preacher and his wife. He and I are on just about the same schedule as far as treatment and side effects. We are usually within a few hours of each other with good and bad days. He's a very handsome, fit man. I can just picture them going to church. Him in his big black robe. Her in her colorful Sunday dress and enormous church hat. We sit together and talk with one another. "How was your night?" the patients ask one another. "How is he doing?" the spouses offer. It's a tight little fraternity. We all have life and death in common. I guess that's always true, but you're rarely so aware of the empty chair waiting for him to come in and sit down with you.

We all know we're going to die one day. It just doesn't usually matter quite so much. I find myself driven to lift people up around me. I joke and tease and flirt. I kiss my wife. I insist on telling Mum I love her, even if we're not used to that kind of bluntness. There simply isn't time to waste being stupid any more. There isn't time to waste pretending to be cool or aloof or the smartest guy in the room. I'm just another guy who is going to die. Just like you. We don't have time for anything but loving one another.

Well, and the occasional dry heave. That I make time for.

Peace,
pennsy

Tuesday, June 22, 2010

#196: When No News is Good News

It is a quiet day. Mrs P is out with a friend. Jake is fast asleep on the bed. I am trying to sync my faithful but ancient iPod to my PC instead of my dying Mac which is painful but necessary. There is just nothing going on today and it feels great.

We did our standard drill in the morning with my radiation treatment. Then a stop by the financial office to pick up some records and a trip to see the AFLAC ladies. This is the office where I used to work. Now it is my lifeline to the income that is making it possible for Mrs P to spend these days with me. Please, if you don't have AFLAC, let me know and I'll hook you up with a good agent. We'd be lost without it right now.

Stopped by the Meijer where a job is waiting for me when I'm well again. I got lots of loving from old colleagues and looked for a big floppy hat. My straw Panama has outlived its usefulness and is a bit more, shall we say organic around the sweatband than is suitable for polite company. No luck with the hat, but we did do some research on a Brita filter for the kitchen. Decided against it. We'll stick with jugs of Highbridge Spring Water for now. I also got Mrs P to finally look at the little netbook I've been thinking about to replace my iBook. That one really pains me, but we're not in Apple land financially right now. All I want is a little gizmo that will let me do facebook and write without being tied to the desk. We'll see how that works out. Right now, my Bride's good sense is outweighing my desire to type under the Maple tree in the backyard.

Then it was back home. Made a big berry, protein smoothie. Uploaded a book on tape that a friend sent to make chemo days go a little faster. All in all, it feels like summer around here.

Nice to have a drama-free day. I keep telling people that they give you three weeks between infusions so you can feel like crap for a week and a half, then feel OK for a week and a half before another chemo round. If that's the plan, it's working. I feel great. No side effects other than fatigue which I deal with by taking a little walk, usually followed by a little nap. I'm reading a good book about exercise and cancer treatment that recommends walking when you feel your worst. It makes sense. Muscle loss is the worst thing you can do during treatments. It kills your ability to heal and recover from all the crap they're doing to make you well. That's why they don't want me to lose more weight. It's also why exercise, even just a short walk, is such a good idea.

Yesterday on my walk, I met some kids from the neighborhood. If you want to know your neighbors, get a big friendly dog. There were five little ones gathered around Jake who showed his excitement by spinning in circles and peeing like a lawn sprinkler. One of the kids asked, "Why ain't you got no teeth?" What is it about me that makes kids comfortable to ask such questions? "I have cancer," I said, "and the doctors had to take my teeth so that I didn't get sicker." One child stood apart from the group, staring at me for a minute. "Lemme see your head," he asked. Puzzled, I removed my cap and showed him my bald pate. "Oh yeah," he said wisely, "you really got cancer." It made me smile, but also made me a little sad to know how familiar this little one was with the disease. I wondered whose bald head had taught him what to look for.

This disease touches so many people, so many families. I know I'm fighting for my life, but I don't really feel very heroic. Just taking each day as it comes. Enjoying a quiet afternoon. Doing crossword puzzles with my wife. Dropping a note to a friend who went out of her way to love me. That's all I'm doing. I'm no warrior. I wonder when I'm done, how will I pay all this love back? Shall I make speeches? Do plays about cancer? Visit the sick? Comfort the dying? All? None? I don't know. I know that cancer hasn't changed me, but the love people have shown me sure has. They have taught me to believe in myself in ways I never did before. They have taught me that "survive" isn't some huge epic act. It's just getting by, taking the day as it comes.

I am a survivor. That isn't my self image. It's my job. My job is to get up everyday and survive. Since April 16th, 2010, I have been a career cancer survivor. That feels better than I could ever have imagined.

Even when there's nothing in particular to do but write about it.

Peace,
pennsy.

Monday, June 21, 2010

#195: Hey, He Ain't Got No Hair!

Out of the mouths of babes. Today after radiation I had a brainstorm. You don't need to chew pancakes. Mrs P and I made our way to the IHOP and breakfast was a smashing success. Besides the blueberry stack now sitting merrily in my belly, I got to smell fresh, crisp bacon for a while before passing it to my bride who is always willing to help out when there is a bacon surplus problem.

During the meal, a tiny voice piped up in the booth behind us. I love listening to children talking in restaurants, but this one almost made me sneeze milk through my tender, irradiated nose. "Hey, he ain't got no hair!" she cried, delighted at her discovery. Her grown up companions immediately began to shush her in that embarrassed way parents have when what they really want to do is laugh their butts off. Then the kicker. "I want to eat his ears."

By this point, it was all Mrs P could do to stay upright in her seat. After an appropriate pause, I whispered, "I'm sure she isn't talking about me." Mrs P prairie-dogged up out of the booth for a quick scan around the restaurant. "Nope," she said, her face red and tears of laughter streaming, "I'm gonna have to disagree." Apparently, mine was the only bald head within view. It was pretty clear that somebody in our section was either a chemo patient or a neo-Nazi. I'm guessing the parents were relieved that I had no tattoos.

So yeah, I'm bald now. I decided not to wait for the medicine to do its evil on me. And I was getting a little neurotic about grabbing little fingerfuls of hair to see if it was coming out yet. It's much, much cooler in the Kentucky heat, and all my hats fit better, too.

I knew him, Horatio.
It started out as a beard trim. The treatments have stopped my hair from growing, and my mustache in particular had stopped in a really prickly place. It was irritating my lips. I started getting this nasty crusty stuff around my mouth and I really don't need to be discouraging anyone who feels inclined to kiss me right now. So yes, I started out to trim my mustache and wound up shaving my head. I never was much of a one for moderation. In a way, I feel a little phony. I haven't really "earned" my chemo stripes yet. Your hair doesn't fall out after one treatment. On the other hand, it does make me feel more like a warrior. I'm fighting for my life, and I want this cancer to know I'm serious about it..

Besides, I look much younger without all that grey hair. And you must admit, I have a great looking head. Better than this guy, anyway. And check out the scar on my neck. Tell me that isn't a sure fire chick magnet. All I need is a bolt sticking out.

Peace,

Pennsy



Sunday, June 20, 2010

#194: The Girl From Limestone, Part Four

This is the story the way I tell it. Much of it is factual. All of it is true. The parts that didn't happen that way, should have...pennsy
Part One
Part Two
Part Three

After Bill died, there were loose ends to take care of. The house on Broadway was too big and too expensive to take care of. And she and Bill had bought the house in Limestone after Margaret died. It was going to be where they retired when Bill was done working. Now it would be Beverly's home again.

The old house and its four acres had always been the place where the women in her family came. Gramma Edder had been living there for years when Margaret and the babies moved back during the war. Aunt Grace had raised her family in the house next door, and when she died, Beth and her family bought it. The purchase kept the property together and got her out of Pittsburgh where life on the streets was taking its toll. Bev and Bill had always brought the kids up to "Gramma's" for a chance to get some fresh air. While Bev visited with her parents, Bill would take the kids for long walks in the woods, teaching them the names of trees and plants. The place was situated atop a mountain, thick with old hardwood trees. There were long views of surrounding farmland and skies you could stare into for hours, both night and day. In the old days, there was no such thing as a starry night in Pittsburgh, but in Limestone, the night was thick with stars, like a planetarium. Bev knew that was where she belonged.

She had some work done on the house. Bought a new car. Tried to cram a lifetimes worth of  "stuff" into a house that was already full of four generations worth of antiques, heirlooms, and old junk. She started reacquainting herself with friends she hadn't really seen since high school. Joined her parent's church. Over the years of visiting and catching up, quilting and cooking dinners, she found herself doing surprisingly well. Losing Bill had been the hardest thing she'd ever had to go through, but it hadn't killed her. She had travelled a long way to get back home, but home she was.

She still travelled. She would jump in the car and drive to Pittsburgh to visit Bonnie, until , like her sister, she felt the pull of the old homestead and brought her family back to Clarion county. Old friends in Virginia would invite her down and she would make the trip, alone. It was the most natural thing in the world. Bill had done all the driving for so many years. Riding made him car sick. She felt like she was making up for lost miles. Bob and his wife lived in Kentucky, now. She could be through Ohio and on their doorstep in eight hours flat. Not the easiest drive, but one she was glad to make.

She became "Gramma" to Bonnie's kids, just "Gram" to Beth's. She was all the things a grandmother should be to them. Confessor, conscience, confident, and loan shark. She swore she would never treat her in laws the way Julie had treated her, and she never did. She might have bitten her tongue now and then, but she never clucked it.

She's seventy one years old now. She still drives to Kentucky whenever she damn well pleases. She quilts on Tuesdays. Her grandkids are growing up, the oldest two have graduated now. She still works as a church secretary, though the schedule is starting to wear her down. Her children love her, her friends stand by her, and she is the matriarch of a strange, but unbreakable clan.

She still wonders what comes next. Bob came down with cancer this year. She spent two months with him and Martha, helping to look after him, but that's a long time to be away from home. Yesterday, she made the drive back through a pounding rainstorm. Driving through Ohio in the rain. Now there's a dream come true for you. She'll check up on the house, see what the kids have left standing. Open some mail. Go to church. Get her hair done. Maybe just sit tight on the "farm" for a while. They'll call if they need her. She has a bag half packed and can be there in a day. Meanwhile, it's good to be home. It's where the women from Limestone have always found their strength.

Part One   Part Two   Part Three   Part Four

#193: The Girl from Limestone, Part Three

This is the story the way I tell it. Much of it is factual. All of it is true. The parts that didn't happen that way, should have...pennsy

Part One
Part Two

At first, her mother-in-law's illness seemed like just more of the kind of grumpiness that they had come to recognize as Julie's personality. She was still a doting mother and spoiled her grandkids with five dollar bills and Three Musketeers bars whenever no one was looking. But she started having strange delusions. One day she told Bev that it was a shame the way the young preacher came to visit with her right out in the open when he had a wife and kids at home. The poor guy was thunderstruck. He thought he was visiting a little old lady. She thought he had come courting. She became convinced that the apartment building across the street was a "sporting house." She would watch folks coming in and out and shake her head at where the neighborhood was headed. Worst of all, she became convinced that Bev was hurting her.

She would tell the kids stories of how their mother was stealing from her. When Bob came home from college, she showed him invisible bruises and described how Bev would beat her with brooms in the middle of the day. It was torture for Bev. She could not have given better care to her own mother. She would clean for Julie, and help her to the bathroom. She took her to the store and to doctor's appointments. Bev was her primary caregiver and as is so tragically often the case, she bore the brunt of all of the dying woman's frustration and anger. The last few years, Bev felt all alone. No one outside of the house really knew what was going on with Julie. Bill and the kids tried to reason with their grandma, tell her that Bev loved her, would never hurt her, but she was intractable. When Julie died, it was like a terrible weight had been lifted, but the shame of that relief stayed with both Bev and Bill for many years.

Back home in Limestone, George had passed after a difficult battle with lung cancer. Margaret struggled on for many years, doing her best to hold the family together. In 1989, all three kids got married within a few months of one another. Grandchildren came. Margaret passed away in the Cleveland Clinic not long after that. She had had heart trouble for many years, and finally the old engine that had brought her young family back home during the war just couldn't run any longer. She passed on the shores of Lake Erie, still safe from the Germans, just the way George and the US Navy had left them.

Bev and Bill were in their fifties now. Bill still worked hard, putting money away for retirement. He had worked two jobs for so long that he wouldn't have known what to do with himself otherwise. Bev was the secretary at church, finally putting all that business training to work. She kept records, filed reports, answered the phone calls, both urgent and routine that come into a church every day. She blossomed into one of the respected members of their community. Then one day, in the upstairs hall, Bill fell to his knees. He felt the pain in the arm and the crush in the chest that his Boy Scout training had taught him meant heart attack. He was in trouble.

She sat in the hospital room while he tried to sleep, keeping all the kids updated by phone. So much had happened to them. So many changes. They had been through a lot and they had stayed together. Fewer and fewer did, these days. She cursed the cigarettes and ice cream sundaes. She watched the numbers on his monitors go up and down. So much had always gone unspoken between them. Now, there was nothing left to say. This attack did not kill him. But they both knew that the next one would. The next year was filled with waiting for that deadly other shoe to drop. He quit smoking, though he used to sneak them in the basement where his woodshop stood filled with unfinished projects. She went to work while he did his best to keep busy in spite of the depression that gripped him. Sitting still made him crazy. He used to work the night shift at the paper, drive school bus in the morning, sleep a few hours, then get up and go work at church or with the scouts. Now the politics and pettiness of church made him sick. He resigned as an elder after a long battle on behalf of the church custodian who deserved a raise but couldn't get one because of one stubborn old man on the board who would not budge. In 1996, the Steelers lost the Super Bowl to the Dallas Cowboys, and the next day, Bill died on the floor of a hospital room. He was 58 years old.
Bev had gone from her mother's house to a boarding house to her mother-in-law's house. Now, she was alone in her own house. Once all the mourners had left and the kids had gone home, she looked around and wondered just what she was supposed to do now.


Part One   Part Two   Part Three   Part Four

#192: The Girl From Limestone, Part Two

As I said in Part One, This is the story the way I tell it. Much of it is factual. All of it is true. The parts that didn't happen that way, should have...pennsy

Bev and Bill set up house in an apartment over a furniture store in Dormont, a suburb in name only at the edge of the Pittsburgh city limits. They would walk to the streetcar stop at the top of the hill and ride the trolley to work at the paper everyday. He was a young printer's apprentice. She was the boss's secretary. They used to laugh that she was really his boss, but she would never treat him that way. She loved him. He was tall and broad shouldered like a football player. His black hair was combed over to the side and he always looked so serious. like a man with important things to achieve. When she told him she was pregnant, he wept like a baby.

They boy was born the following summer. Nothing like having July babies in Pittsburgh to make you appreciate winter. They named him Bob, after his grampa. Bev and Bobby used to sit in the window seat over Potomac Avenue and wait for Uncle Bud's car to pull up to the front stoop. Bill would step out in his white shirt, sleeves rolled up, black lunch pail tucked under his arm, with a copy of the evening paper in his hand. He would smile and wave. Uncle Bud would laugh, toottle the horn, and speed off with a screech of tires making the old men on the bench in front of Pete's barber shop swear in Italian.

The three of them were a family. Of course Bev couldn't work any more. She had help. Julie and Bob lived just a few blocks up the street on Broadway, where the streetcar ran. and Hazel lived right across the hall. she was a widow who loved Bev and would babysit on the nights when it was just too hot to spend one more minute in their house. Bill would shave and put on lotion and Bev would put on heels and they would go down to the Hollywood for a double-feature in the air conditioned shadows. After, they might go down to Dickinson's for a soda or Campiti's for a small cheese pizza.

He was working hard. Studying for his union exams. You didn't get to be a union printer just because your daddy was in the union. You had to know your stuff. Bill was smart and he was determined. He had been an Eagle Scout, one of the youngest ever. Bob had been his scoutmaster. Bill wanted to take care of his family and he wanted to make his dad proud. He did everything he could do do both.

Then, the year after Bobby was born, Bob had a stroke. He had always been a smoker. Liked a drink. Liked a good time at the lodge. Julie shook her head and rolled her eyes. What could a wife do? When Bob died, it was like a light went out in Bill. How could God take his father like that? Not even sixty years old? Never to know his grandson? Never to see his own son make something of himself? What kind of a God would do such a thing? No kind of God worth a damn. That's for sure.

She watched helpless as his smile disappeared. Years later, it would flash from time to time, but it would never be quite the same. Her children would love their father, but they would never get to meet the man she fell in love with. Part of him went into that hole on the South Side of Pittsburgh where Bob and Julie had scratched their way through the depression together.

Julie was devastated. She became angry and suspicious. She was afraid to go out alone. Everywhere she looked there were niggers and pollacks and dagos trying to cheat and steal and kill. She started getting lost, and had to give up her little red Valiant.

Bev was pregnant again, and the apartment on Potomac was not big enough for four, so they bought the house on Broadway and moved in with Julie. It was not an ideal situation for a new mother. Julie's room was immaculate. It looked like a showroom in a furniture store. The rest of the house looked like a place where a two-year-old boy lived. When Beth was born there were twice as many kids to spoil, the favorite children of the favorite son, and Bev couldn't have kept up with a team of house keepers. Julie would cluck and shake her head. Whenever they left the house, they would return to some secret cleanup project. Julie would have polished the bathroom or refolded all the drawers or scrubbed out the refrigerator. She never said a word. She didn't have to. Judgment hung thick in the air like vinegar and pine oil.

Working was out of the question for Bev now. For one thing, she had her hands full with two kids who seemed determined that only one of them was going to life to adulthood. Why in the world did they fight like that? Nobody fought like that. They couldn't even be in the same county together without torturing one another. For another thing, if she ever told Julie she wanted to go to work, the old woman would have torn into her like an angry eagle. Wives took care of their husbands and children. Finally, Bonnie was born and that was it. Three. No more.

The kid's screaming used to take it's toll. Spankings were barely useful. Threats became more and more insane. "If you two don't stop fighting, I'm leaving/calling the police/ sending you to the orphanage where they'll beat you with electric cords till you learn to behave." She could hear the words come out, barely believing herself capable of saying them. Then she would cry. Hard years.

The years passed, the kids got older. The newspaper went on strike and Bill started looking for other jobs. He mowed yards. He cleaned the church. He drove a school bus. Bev went to work at the pharmacy to help bring some more money in. She finally had a reason to get out of the house and meet people that not even Julie could fault. They all needed her to work. She really liked it. She always liked business more than keeping house. The neighbors came by and they would laugh and gossip together. Later on, she moved to the Stop'n'Go across the street. Bill didn't like the hours, but Bev liked the independence that working gave her. She also was exposed to people and things she had never encountered as a sheltered country girl. She met junkies and pan-handlers. Con artists and crooks. She finally was a part of the street life that she had been watching from under the green canvas awnings on her front porch for so many years. It felt good to be free again.

Then Julie started getting sick.

Part One   Part Two   Part Three   Part Four

#191: The Girl From Limestone, Part One

This is the story the way I tell it. Much of it is factual. All of it is true. The parts that didn't happen that way, should have...pennsy

She was born in Hershey, Pennsylvania, a beautiful little village in the mountains of Pennsyltucky that smells like chocolate. She was the eldest child and first daughter of George and Laura, her mother who for some reason haded her own name so much that she insisted on being called Margaret all her life. Hershey, at the end of the depression was one of the few happy places in the world, what with the street lights, fountains, and all the buildings being made of chocolate, but George was not the kind of man who could ever be comfortable sitting still. He knew there was no future for his little family there, so he moved them to Harrisburg.

Harrisburg was not like Hershey at all. There was no chocolate there. There were politicians. George and Margaret tried to fit in, but their little girl didn't like the noisy, dirty city or the Philadelphia Democrats who cluttered the streets. Another little girl was born. Life was hard. Then one Sunday morning in December, everything changed.

Strange people from far away killed a lot of other people on an island in the middle of the ocean. Suddenly everybody had a job. George got a job guarding Lake Erie from the Germans and Margaret took her babies home to Limestone to live with her mom. They had a little bit of land, a barn, some trees, a big garden. Everybody worked hard and got by OK.

When George came home from the war for a while, everybody would hug him and he would pick Margaret up in the air and spin her so her dress would float in the sunshine. They walked the gravel roads of Limestone and he would tell her stories about people he met from foreign lands like Texas and Cleveland. She was so proud of him and he was so very handsome in his uniform. He looked just like a sailor should look. They would sit on the porch and eat home made ice cream and white cherries, then George would go back to the war. It was good knowing that the folks up in Warren were safe under the Navy's protection.

A boy was born, and they named him George. Then after the war, one more baby sister to round out the family.

So the girl from Hershey grew up with her family around her. They had a cow and a pig. Some chickens. Not really a farm, more like a very large pantry. In the spring they would plant their garden, In the summer and fall they would put up enough fruit and vegetables to make it until the next year. The depression was over, but they knew better than to go without provisions. She used to lie on her back in the grass and watch the big clouds parade past the trees, nibbling on a green pepper from the garden or dipping a stalk of fresh rhubarb into a bowl of sugar and crunching it down.

George was a hard worker. He did lots of jobs. He worked for a tire company. He sold insurance. Sometimes he drove a van that delivered movies and film strips to schools all along the new interstate highway from Corsica to Dubois. He once worked for a man who helped people to breed their cows. He had a special horn installed on his old Chevy Impala and when he pulled up the the gate and honked it, it sounded like a frisky bull. All the lady cows would come running to see the handsome new bull and George would.... to be honest, no one was really sure what he did, but the farmers were happy about it. The cows were a little disappointed, though.

George tried a lot of jobs, but never really caught on anywhere. What he was best was a Father. The girl from Hershey loved her dad so much. He was big and strong like a cowboy and he could pick her up and carry her through the tall grass. And he could laugh. He had a laugh like thunder and he would joke and poke fun and they loved each other very much.

The little girl grew up into a pretty young woman. She learned to play the big old piano in the dining room and she studied hard and when it came time for her to get married, she was a little stuck. She was a lot like her Dad. She didn't like to stay put. There was more of the world out there than she could see from Margaret's rhubarb patch, and she wanted to see it. She didn't want to stay home pressing someones shirts and making fried ham sandwiches for their lunch pail. So she decided to go to business school in Pittsburgh.

No one from the farm in Limestone had ever wanted to live in Pittsburgh. It was bigger even than Harrisburg. It was full of smoke and strangers and colored people. Pittsburgh was as far away from Limestone as Limestone was from the Moon. She packed up her Smith Corona and her Stenotype machine and George and Margaret drove her to a boarding house for single ladies in the city. The night they left, she cried and cried. She had never been so alone in her life and she had no idea what the world had in store for her. Beverly Cole was sure she had made the biggest mistake in the world.

Business school was so much fun. She met all sorts of girls. She even met Jews and Negroes, people she had only read about back home. They were just like the folks in Limestone. Some people were loud, some were shy. Some loved to laugh and some were kind of grumpy. She did well in her studies and found a job working for the Pittsburgh Sun-Telegraph. One day a big tall man with an easy smile and a bald shiny head came into the office. He was a printer named Bob and he made her laugh. Everybody liked Bob because he had such an easy way of talking to you. He used to tease her about introducing her to his son. She would blush and look down at her desk, but she wondered what the boy might look like. She was sure he would be nothing like the guys back in Limestone who smelled of coal oil and cow barns.

Bill Johnson finally got up the nerve to ask her on a date. He polished up the old '39 Cadillac convertible till it shined like a bootleggers car. They went on a long drive in the country and he told her about how much he loved the woods and she talked about how much she missed the country. They drove so far that they left the smokey Pittsburgh skies far behind. Bill pulled the old Caddy up under a tree and they talked and talked until the sun started to set. "Well, I guess we better be getting back," he said. He was a gentleman. He turned the key. Nothing. That's right. The girl from Hershey was lost in the country with a printer's son from Pittsburgh who claimed he had just run out of gas. She huffed and crossed her arms while Bill trotted to the nearest farm to borrow a phone. He called his brother Buddy who was more than happy to drive out to the country with his girlfriend Eileen and a can of gas. They laughed about that night for years, but never did tell their parents about it.

She forgave him, eventually. He was very handsome, and he had been a gentleman. Mostly. They started going steady. Her parents loved him. His parents loved her. Well, they loved her, but his mum was a tough little nut to crack. She had only one child left, her baby boy, and she seemed like she was going to make it pretty tough for the Girl from Hershey to get him away from her. Not that she wanted to. Julie Johnson was everything in a wife that she would never be. Julie turned a blind eye. Her boys walked on water. She would get up out of a sick bed to make them eggs at two o'clock in the morning. She ironed their pillowcases for Pete's sake. Her floors sparkled, her window panes were invisible, her living room could have safely been used as an operating room. After they were married, she would look around and cluck her tongue whenever she came into the house. It hurt, but Julie was her mother in law and she loved her as best she knew how.

They were married in Limestone, in the little white church just down the hill from the house where she grew up. Bill and Beverly Johnson became a family, joining the rough talking Pittsburghers to the slow speaking family of George and Margaret. Bill looked like a big band singer in his white tux jacket and Beverly wore a ballet length dress with a poofy skirt and a tiny waist. They honeymooned in Williamsburg and visited Luray Caverns and the Skyline Drive.

Looking out the windows over the forever skies of the Blue Ridge, she wondered what would happen next.

Part One   Part Two   Part Three   Part Four

Saturday, June 19, 2010

#190: Book Review - Cancer on $5 a Day...

"There they are!!!"
So we're driving through the parking lot of our local big box mega mall looking for the sporting goods store so we can stock up on LIVESTRONG bracelets, when all of a sudden Mum pipes up, "THERE ! I SEE DICKS UP AHEAD!!!" That's right. My seventy-one year old mother sees dicks in the parking lot..

This is the kind of experience you can expect when you open Cancer on $5 a Day (chemo not included) by Robert Schimmel. Two things you need to know about Schimmel: he does not pull punches, and his work is not appropriate for most church services. As collaborator Alan Eisenstock puts it, Schimmel works "blue. Deep blue. This may not be the book to sit around the fireplace reading aloud to your mom. My mom? She laughed herself to tears.

Schimmel's journey begins at the Mayo Clinic in Scottsdale, Arizona. He and his parents are waiting for news of the biopsy he just had on a lump in his left arm. Two doctors enter the room.
"Robert," the lump doctor says. I sit up. With a slight flourish, he gestures to the other doctor as if he's the grand prize on a game show. "This is Dr. Mehldau. He's going to be your oncologist."
"Oncologist?" I hear myself say. "You mean I have cancer?"
So much for breaking it to you gently. But then, there's not much gentle about cancer treatment. Except the people you meet. And that's where Schimmel's comic razor meets his unique genius. He loves people. He meets idiots, clods, and oafs and finds them fascinating, (and hysterically funny). His gratitude for the care he receives is matched by his own instinctive desire to make people laugh. It's the force that drives him, and he puts it to use without mercy. I will not spend the rest of this review spoiling all his best jokes. I won't tell you about the grumpy guy in the infusion room or the chaplain who lets him bum a smoke, but I will tell you that there is a story about a merkin salesman who visits his room that is worth at least twice the price of this book all by itself.

Schimmel is brutal with only one person in the book: himself. He looks at his own life and refuses to blink. There is nothing hidden here, and that honesty is what makes  this more than just a funny book about a serious subject. To be honest, parts of it scared the hell out of me. I think his chapter called "Giving Up" might be the most frightening thing I have ever read about cancer. But it is also the most inspiring. His family never give up, and when he is ready to, they refuse to let him. It is a deeply moving moment in a tragic, comic life.

Schimmel's struggles go on. According to his last Facebook posts, he is currently waiting on a liver transplant. If mine were worth a damn, I would gladly give him a hunk. I can't wait to read the next chapter in his life.

Friday, June 18, 2010

#189: A Card From the Universe

Today I received two lovely cards from two lovely friends, one from Vermont, one from Corsica in Pennsyltucky. Here's the thing. They were the same exact card. Same day. Different states. different lives. It could be a cooincidence, but I am in "good omen" mode these days, so I'm sharing the text with you.


"The Oak Tree"
Oak Tree and Valley Fog, Tehachapi Mountains, California, 1989
Photograph by Gordon Osmundson, 1999
ihpworkshops.com
(A Message of Encouragement)

A mighty wind blew night and day,
It stole the oak tree's leaves away,
Then snapped its boughs and pulled its bark
Until the oak was tired and stark.
But still the oak tree held its ground
While other trees fell all around.

The weary wind gave up and spoke,
"How can you still be standing, Oak?"
The oak tree said, "I know that you
Can break each branch of mine in two,
Carry every leaf away,
Shake my limbs and make me sway,
But I have roots stretched in the earth,
Growing stronger since my birth,
You'll never touch them, for you see,
They are the deepest part of me.
Until today, I wasn't sure
Of just how much I could endure,
But know I've found, with thanks to you,
I'm stronger than I ever knew."

Something about this card made folks who don't know one another think of me. That's flattering and inspiring. I guess I'm the busted up tree. Cancer is the wind, that's for sure. And what about those roots? What's holding me into the soil of life when the whole world seems in the process of blowing away?

My friends, for one. People who drop by, or just drop a note. Voice mail messages and lovely little Halmark cards. My friends give me a reason to want to get out of bed.

My family. Mum and my sisters. My brothers in law. All the people, blood kin, love kin, and kinda kin who have known me for years and can put me in context the way no one else can.

My wife. She is my tap root, my touch stone, and my heart. Tear my trunk up out of the ground and throw me in the chipper, my deepest last fiber will still be wrapped up around the beautiful Mrs P.

And beyond even that, beyond the place where there are any roots at all, below where the earth itself bears the faintest footprint of my passing, there is God. Whom I knew in my mother's womb. Whose prayers I learned kneeling beside my grandfather. Whom I have blessed and cursed and loved and hated and blamed and thanked for every damn thing that has ever happened to me in my whole life. God may make me crazy, but God will never let me go.

Thanks for the reminder, y'all. There are parts of Pennsy not even cancer can blow away.

Thursday, June 17, 2010

#188: Sex and Cancer

 This is the first time I've tried to write on a fairly bad day, so today's post will be an experiment. Naturally, I've chosen the most safe topic possible...

By now you're asking yourself, "What about sex? Where does Little Pennsy fit into all of this?" Well, first of all, shame on you for letting your imagination wander so far afield of appropriate territory. The answer is "None of your business." So let's talk about sex.

To begin with: is there sex during chemo? Have I mentioned that my SPIT is toxic? That people wear haz-mat suits so I don't SWEAT on them? That under certain circumstances, you can use me as a night light? No. There is no sex during chemo.

And then there are plumbing issues. There's the literal plumbing. I have a piece of 1/4 inch tube about 30 cm long sticking out through my abdomen. Even if you could get past the distraction of that little accessory, I prefer not to think about the consequences of a forceful contraction of my stomach muscles. There's just no telling what might come out of the thing.

Of course there is also the figurative plumbing. I have a secret for all you bookworms out there. Remember back in school while you were studying so hard, and all the happy people were out playing tennis, jogging, and having sex with one another? They could have sex because they were physically active. During chemo and radiation, a rigorous workout involves climbing halfway up the stairs, sitting down, trying to remember what you thought was up there, then assuming that if you live, you'll find it later. Then you yell for help so someone can call 911. This is not an active lifestyle. Little Pennsy is not impressed.

Some nights, it's all I can do to work up enough slack to find the thing so I can pee.

But do not despair. There is sexuality during chemo/radiation. Oh, man is there ever.

We drive the same route to the cancer center every day. When we're on time, we hit a main crossroad into campus just as people are arriving for classes. We follow the most lovely collection of soft round behinds all the way from South Broadway to the hospital. All shapes and colors. Young and old. Long flowing hair and short, pixie-like summer cuts. And the bicycles. Don't get me started. I had no idea that human legs could be so very long.

Look, I know I've talked about how much cancer has taught me to notice the calls of birds and the smells of the grass. But yesterday, I found myself gazing, not with lust, but with genuine awe at the breasts of a woman my mother's age. They were magnificent.

I flirt without reservation. This morning my radiation techs, Amy and Katie (honest to god, "Amy and Katie") giggled as I described my Penthouse Forum letter about our adventures on the big radioactive bed. I am charm. I am warmth. I am God's gift to Woman.

So don't cry for Little Pennsy. He doesn't get the workout he used to, but he's still peeking around. Reminding me that even in this, I am still alive.

Peace,
pennsy

Wednesday, June 16, 2010

#187: Please DON'T Keep Your Hands to Yourself

"I'm a toucher," she said as she gently patted the vein in my arm, waiting for it to rise so she could draw some blood. First it was kind of annoying. It seemed to take a long time. But then, I started to find it kind of soothing. Pat. Pat. Pat. Pat.

He had just driven the thousand miles from Colorado an hour before. My brother-in-law whose strong arms could set a telephone pole or motor a Harley to Nova Scotia from Dallas. We embraced tenderly in the living room, as if he were afraid to hurt me. Later, when I started nodding off, he placed his big hand on mine to make sure I was OK. When he left, he brushed my crew cut three or four times, cooling me in the late evening heat.

There was a time when walking down a sidewalk, holding my mother's hand would have sent me screaming for the nearest therapist. Yesterday, among my worst yet, I clung to her like a child, even if she does have to reach up to touch my hand now. She felt so small in my fingers, but never weak, and never fragile. I outweigh her by twice, but I had no doubt she would catch me if I should stumble. In the afternoon, she sat quietly by my bed. The day was hard on her, too. Our hands met, silently, naturally closing the gulf between us. My mother's hands are the softest place in the world.

She bends over me, this woman who married me. With surgical precision she flushes clear water through the PEG tube that may one day be the only way I can eat. Carefully, she hands me my pills, hundreds of dollars worth in a single dose, placing them quietly in my palm. She slips the thermometer out from my lips, reads it, and smiles. Normal again. Bending to me, she kisses what is left of my mouth and I feel her breast press against my heart. I can do this. We can do this.

He sleeps in the spot next to my right leg where he has since he was a pup. Last night, I heard the wind as the storm approached. Thunder rolled and a flash of light filled the room. After the biggest boom, I felt it, impossibly, impossibly across my ankle. Pat. Pat. Pat. He tapped me with his paw and rested his chin over my shin. "It's OK, Pappa. It's only thunder. I'll look after you."

Jake's a toucher, too. Pat. Pat. Pat. Pat.

Tuesday, June 15, 2010

#186: I am a Battlefield

When you come down to it, that's what cancer treatment is. It unleashes  the most toxic collection of chemical, biological, and atomic weapons on the tissues of your body. Last night, I woke up in the middle of a fire fight. My temperature shot up to 101.4 degrees, and I felt as if my whole face and torso were covered with sunburn. Mrs P nursed me along. Gave me some Tylenol and a cool compress for my face and chest. Eventually, we got it back under control, but it gave me a scare. By the morning, I felt as if I were running on empty batteries. I could barely hold my head up to drink my breakfast and the drive to the cancer center seemed to take forever.

The radiation table was a merciful rest. It is strange how something so destructive can be so serene. The machine goes about its quiet business, slowly cooking me from the inside out, but cooking the cancer, too.

Next came a trip to the doctor to talk about  nutrition. In spite of the fact that my teeth are gone and my sense of taste is all but gone, I have to continue finding ways to get energy into me. I heard the most amazing counsel today: "You are past the point of worrying about a balanced diet. Right now, you need as much protein and calories as you can get." In other words, I have begun starving. Fat and protein. That's my goal.

Finally, they drew some blood to find out about this fever business. My blood pressure was surprisingly low, and the nurse had a rough time finding a vein - pretty unusual for me. After they ran my labs, they found that my white count is low, so we'll be adding antibiotics back into the mix.

It is a peculiar sensation to be a battlefield. I feel collateral damage all around the landscape. My mind is mostly clear, though I get very irritated sometimes when people try to help me too much. God how I have grown to hate the question "What would you like?" I would like a nice piece of fillet and a baked potato the size of my head. What do you think I would like?

This morning in the exam room, I felt overwhelmed by a depression - not sadness, mind you, but a complete absence of life. You know the commercials where depressed people sort of fade into the background? I would not have been at all surprised to find myself walking down the hall one minute, then gone the next, an empty space where I had been shuffling along just a moment before. When we finally made it back home, I collapsed into bed and prayed for life to return.

And for a few moments this evening, it has returned. Mum and I had some eggs for supper. Jake got to play in the yard for a while, and managed to drag wet footprints all over my nice cool sheets. Mrs P and the Brothers build a hand rail for our front stoop so we don't have to try to catch one another on the day we inevitably try to topple over into the yew hedge by the porch.

Now, I'm in front of a fan, typing away serenely, hoping for a peaceful evening and some quiet rest. There seems to be a pause in the action for the moment. I know there's a long battle to go before this cancer is dead and gone from me. There will be many worse days and nights to come.

But for now, I'm going to enjoy the setting sun over the Bluegrass. It's what God has given me tonight. I'll take it.

Peace,
pennsy
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