Saturday, July 31, 2010

#240: I Know You...

I know you... It's an unspoken nod of recognition. We members of the cancer fraternity can spot one another in the halls, in the waiting rooms. In the parking lot while one of us is waiting for a ride, the other will smile. I know you... Today, waiting for the elevator, the door opened and our eyes met. He was emaciated and was wearing the mask that the hardcore chemo people wear. He avoided touching the buttons or the door has he tried to hold it open for Mum and me. We smiled. "I know you. I know your struggle. Keep fighting."

No words are exchanged.  They are unnecessary between us, and meaningless to others. No matter how devoted our caregivers, they can never know us the way we know one another. A silent nod. Nothing more need be said.   

#239: Summer Turns the Corner

Ah, July. You miracle. Of all the months, you are my favorite. You are summer in all its glory. You are bugs and thunderstorms. Green grass and shade trees. In July, the hard work of the spring is finished and the labors of harvest have not yet begun. Even the squirrels have time to play.

The end of July has always felt like the end of summer to me. Especially in the Bluegrass where the rain slows down and things start turning brown. As kids, we all heard the mournful sound of the school bell in the distance as August began. Summer turned nostalgic, something to be remembered. Or something to wring a few more days of wonder from before Labor Day.

This July has been especially full of marvels for me. It started with chemo and ends with freedom. Freedom from toxins. Freedom from radiation. Now is the season of waiting. Waiting to find out if it all worked. Waiting for the blood clot in my chest to pass harmlessly away. Waiting for my mouth, my throat, my beard to return to health. Waiting for my teeth... That's a lot of serenity to sustain!

But waiting is not idleness. There is plenty of work to do. I have to practice swallowing so my body will remember how once food tastes good again. I have to walk, so my lungs will remember how to breathe once I take this tube out of my nose. I have to spend more time sitting up so my veins can do their housekeeping chores without more clots. And I have to love, most of all. So my heart will remember why I've fought so hard.

Just like in the garden, it is time to start the heavy work of the harvest. Spring's labors are bearing fruit. Summer play time is over. It's time for me to start doing a few of the things that Mrs P and Mum have been doing for me.

I'm fifty now. Another year closer to growing up. Thanks, July 2010. I'll never forget you.

Friday, July 30, 2010

#238: Gifts

Yesterday was eventful. A friend brought me a DVD of greetings from the cast of RENT. I'll treasure it always

An old friend sent me an iPad for my birthday. I'm using it now, trying to get used to the keyboard.

And of course, what day is complete without a battle with an insurance company? Here's the gist of the conversation... "Is this prescription covered?" "Yes. The insurer will cover four thousand dollars a month." "What's the copayment?" "$2150"
 
We have returned to the negotiating table.

I was really upset and depressed by this conversation. Fighting cancer was easy. Cancer fights fair. Insurance companies come at you from all directions at once and they don't care if you live or die. Cancer is honest about trying to kill you, at least.

Today is a quieter day. Mrs P's brother has had his last chemotherapy treatment and is having the port removed today. Looks like we're all surviving this part of the battle.

I got a wonderful letter from my Aunt today. She writes just like she talks. A note from her is almost like a visit. Just news and good wishes. Who could ask for more?

Mrs P just got out of the shower. She smells good. Soon it will be time to take me in for my blood thinner injections. As long as the hospital is willing to give them to me as an out patient, I can afford to fight it out with Blue Cross. Of course, Mrs P is likely to keep smelling good no matter what the insurance company does. 

Wednesday, July 28, 2010

#237: Calm Seas, Still No Wind

Like a long sea voyage when the wind dies and there are no signs of it ever picking up again. That's what these days feel like to me. Uneventful. I should be grateful.

Since I came home from the hospital on Friday, Mum has arrived. That's great news. Also, the insurance company continues to refuse to pay for the blood thinners I need to stay alive. My oncology team has dug in their heels and they are fighting for me. BC/BS are showing some signs of giving in. Meanwhile, I switch my oxygen line from the big machine to the little tank once a day and we roll down to the Markey Center for my injections.

I've been sleeping a lot. Mom was alarmed by it, but they've assured us that my pattern is normal and to be expected at this late part of my treatment. I'm just not particularly entertaining, that's all.

One of my favorite observations is that my tongue tastes a little less lousy every day. There may be some actual eating by mouth in my future. That will be a glorious day. Of course I'll have to be able to swallow first

My neck has also started clearing up. I had severe burns, dark, crusty scales flaking off of my neck, especially on the right side, where the cancer started. We've been hitting that area pretty hard with moisturizer and once a day I scrub it lightly to try to get the worst of the burned tissue off. It is still very tender and ugly, but we're making headway, at least on the outside. The sores inside will have to mend on their own.

Progress comes in tiny steps, but it comes. In a few days, my body will realize that it is no longer being bombarded with rays and poisons and start healing itself. A few weeks after that, the testing will begin - the long series of mileposts that will confirm that the battle has been won. Part of me dreads those days. I don't want to spend any time sitting around waiting to hear if I still have cancer. On the other hand, I want to fill all the other days as best I can. If there is good news, I want to be ready to enjoy it. If bad news, I don't want to regret the way I've spent these next few weeks.

If the wind isn't going to fill my sails for a while, I'll just have to find something else to do in my little ship. Maybe some fishing...

Peace,
pennsy

Tuesday, July 27, 2010

#236: Pennsy Looks at Fifty

They are the moments that changed everything.

The morning I decided to carpet my backyard swing set and wound up breaking both bones in my right arm.

The night I saw her breasts for the first time, creamy and translucent in the moonlight.

The day I stopped to watch some bass swimming in a pool in the creek at scout camp, not knowing that for the rest of my life, when I wanted to come to a peaceful place, I would return here.

The night my sister called to tell me that Dad was gone. The day before when his last words to me were, "God bless you."

The morning you gave me a scholarship to come be an actor at your college.

The afternoon you invited me to sing "God Bless America" with the band.

The day you showed me your face during my first communion.

Big moments

Nixon quit.

The Steelers won. And won. And won. And won.

The Towers fell.

Small moments.

You said you'd like to go out again.

To move in together.

To get married.

We said "I do."

And we did.

A lump on an x-ray. no bigger than a fist, a light bulb

"Cancerous," he said.

And it was.

And we fought for our life. Together.

Together.

Fifty is not such an achievement, I suppose. It's more of an attendance award. A birthday is the medal you get for sticking around. They all start running together. But the big ones, the new decade ones, they are worth noticing. Time to take stock. After all, the chances of having fifty more birthdays are pretty slim. It's worth noticing what's passed by during all those mornings and evenings. The things done and things left undone. Choices made and choices avoided.

I wish I had been braver.Worked harder. Not given up so easily.

But I'm glad I was strong enough to try. Stubborn enough to stick with a few things. In love enough to stay.

I'm glad I lived long enough to figure out how cool my mom is.

Long enough to forgive God. And myself.

Fifty more birthdays? Why not? It turns out, I'm a fighter with an awful lot of people in my corner. I had no idea.

Fifty more! Let's do it together! Let the lion roar...

Peace,
pennsy

Monday, July 26, 2010

# 2 Gest arfer again

Papa is sleeping and Mo is riting tonight because the stupid dawg is too busy chewing on things.
Plus Mo thinks (me is MO!) that the dawg talked about himself too much.  and posted too meny pichers of himself.
I will only post one because I am so hansome all of you hoomans would be jonesing for a cat just like me but i am an original and the eternal kitten so you cannot have me. sorry. I may hab sum teknikal trouble because papa doesn't have many pichers of me. Mumma has tons. I am her favorite. Really i am everyone's favorite. Except the dawg. and nutty as squirl poo Maggie who lives upstairs cuz she is evil incarnate... only mumma who is praktikly a saint luvs her. mumma has a whole church named after her. Kewl. Okay no picher, once papa is not stoned and sleeping and talking about chinese noo years he can edit in a picher of me....

Papa who I call Mr. Wumpy, has been sik and demanding of my mumma. I have not gotten nearly enough combings, treats or bellyrubs. I had to go and git sik too so mumma would have to devote time to me. HINT: If you just poop everywhere you will git attenshun and hear your name alot. I did not know my middle name was Dammit until recently.

Grammy is back today. Grammy loves me best. End of that story. Here is Grammy quilting. I sit on her lap and hep.









Papa is talking in his sleep about chinese zodiacs and how the first part of the year is hard fer rats but the sekund haf is better. The other nite papa sang and hummed in his sleep. Papa is funny!

The stupid dawg is aksing to put his picher up but I sed NO WAY. He is blonde and very vein. my tail is still the most fluffilicious and does not smell like dawg!
I will go fer now but i will be bak when papa is too sleepy to bwog. I am better than the dawg at reporting. Mebbe I kin getz me a fedora with one of those "press" stikers and report on all that is happening here.... I think I have a very gud future as a bwogger.

and that's the way is was. According to MO!

Sunday, July 25, 2010

#234: Plot Twists and Answered Prayers

One thing about my story, it isn't predictable. Not sure how much fun it is to read about, but it's fascinating to live through.

I won't share any more stories about my neighbors in the hospital. They were so ugly to one another that it stopped being funny fast. Mostly it was uncomfortable and sad. Cruelty can become a habit in a relationship. We don't intend to hurt one another, it's just the way we're used to thinking about one another and the meanness comes out before we know it. At one point during a particularly hateful exchange, Mrs P held up a little sign that said, "I REALLY love you." I knew just what she meant.

So given the state of the karma in our room, I was especially grateful when the doctors told me I was going home. It took a long time to get things in order. There were drugs to order and Oxygen to arrange for at the house. Mrs Swan took me on a little walk with the breathing monitor  and we determined that I would need to be on O2 for a while. So now I have a tank on wheels for when I travel and an amazing little machine called an oxygen compressor (I think,) for when I'm in the house. It pulls oxygen out of the air and pumps it through a long hose that finally empties up my nose. The thing has 50 feet of line on it, so I can move freely around the house as long as the cats don't develop too great an interest in it my long green string.

They prescribed this very expensive blood thinner for me to inject into myself at home. Naturally the insurance company refuses to pay for it. We're going to visit Punkin in the infusion suite over the weekend so she can give me the shot, then on Monday we'll figure out something else to use. If they put me back on Heperin, I'll have to go back into the hospital. This scenario makes sense to some suit at Blue Cross, apparently.

In the meantime, I spend most of my time sleeping and marvelling at how lucky I am to be alive. They discovered this clot by accident and it would certainly have killed me if they hadn't seen it. It's the first time in a long time I have felt as if God is actually on my side. Seems like he's been working against us for a few months. It's just reassuring to think that there is something left for me to do in this world.

Can hardly wait to get at it!

Peace,
Pennsy

Friday, July 23, 2010

#233: So Far So Good

I made it through the night. Mission accomplished. I owe it all to the drugs. This morning I awoke to the sound of my new roommate being being bathed. I've never been so grateful for a curtain. He and his wife bicker constantly. This is not only very annoying, it is also terrifically funny because she sounds like Ma Kettle and he sounds like Billy Bob Thornton from Slingblade. Um Hmm.

He has something very wrong, someplace very personal. Think you already know too much? Imagine how I feel about them taters...

I suppose I shouldn't say this, but I think Billybob has a crush on Mrs Swan. Ma was out of the room and  I may have imagned it, but it seemed to me that he started converting his "r"s to "l"s the more they talked about his infected pelsonar paahlts.

It is a beautiful sunny morning and Slingblade is snoring peacefully now. The heat promises to be deadly today. I would love to go home. but I wonder if I could travel underground or something. Nobody has said the word "discharge" with any promise yet, but I'm looking forward to hearing it.

Typing is a bit of a chore because I have this SpO2 sensor thing taped to my index finger. Hanging out in the hospital is one of the most tiresome things in the world. At least when I visit someone, I get to go home eventually. Having to stay takes all the fun out of it. Gonna cut short now, maybe post more after the neighbors have provided better material.

Peace,
pennsy

Thursday, July 22, 2010

#232: Rough Sailing or The Clot Thickens

Strange to say, I am about to spend a second night in the hospital. I'm not sure how much of the story I even remember... It's Thursday and I haven't written since Sunday morning. Let's see...

Monday I went in for my radiation treatment. Four left to go. When I was finished, I could barely stand. I was sweating, weak, and light headed. The docs decided I was dehydrated and gave me two litres of fluids. During the infusion, I was violently sick, so sick that there was blood in the bowl. This scared the living daylights out of me. It was determined that the blood was from my irritated throat and not "frank" blood from a bleed somewhere. We upped my anti-nausea drugs, I went home, and passed out.

Tuesday, three left to go. Same symptoms, minus the throwing up part. More fluids. Doc suspects an infection of some kind. Chest X-ray and Urinalysis both clear. Doc prescribes antibiotic just in case. Mrs P gets to fight it out with the bean counters at Blue Cross who don't want to pay for the drugs the Doc says I need. He changes the script so that they will approve his medicine. Why does this seem backwards to me?

Wednesday, two radiation treatments left to go. When I enter the lobby of the Markey Cancer Center, the lady at the desk jumps up and makes me sit down. She gets a wheelchair and wheels me to the treatment area herself. The tall, handsome preacher jumps up and begins praying over me. Shug fetches me to the back and gets me onto the table for my treatment. Only one left. I can barely make it back into the chair. Shug rolls me out, and Mrs P gathers me up and takes me to the doctors' suite upstairs.

More mystery. More furrowed brow. More fluids. A CT scan is ordered. Somebody wheels me through the catacombs under the hospital to radiology. A nice lady shoots the contrast in through the IV line they've been using for my fluids. The scan takes moments to complete. Someone wheels me back through the tunnels to the doctors' suite again.

When we arrive, all my doctors are waiting for me. They speak in hushed tones. "The scan shows a PE."

"A What?"

"A pulmonary embolism."

I am familiar with the phrase. It was featured prominently on my father's autopsy report. I believe that the next place I go is the state of shock.

Now I'm rolling back down the catacombs, much faster this time. My radiation oncologist is pushing my chair. When we arrive at the emergency room we do not stop at triage. He is pushing me right through, telling the nurse that I need to be admitted at once, rolling me to a room with glass windows and steel fixtures. My God. I've beaten cancer and now I have a blood clot waiting to slip its moorings and kill me.

Doctors are hovering over me. I haven't eaten. I need my pain meds. This one does an ultra sound. A thousand people in scrubs with a thousand clip boards ask me the same freaking questions over and over. Do I smoke? What meds am I on? Oh, I have cancer? What kind? Mrs P looks scared. My oncologist looks scared. I may have shat myself. My nurse is a smart Alec wise guy whose neck I would happily wring except there is evidently something like a live hand grenade nestled between my lungs, waiting to complete its trip from my leg to my heart. Hours pass.

Mrs P calls Mum from outside my room. They find me a bed upstairs.  Judge Somebody is on the TV. A sign across the room informs me of my nurse's name and encourages me to have a great day  (smiley face). I am not having a great day. I am having the other kind of day.

Someone hands me a phone. It is Mum. I try to convince her that I'm OK. I don't even convince myself .More doctors. Nurses. Clipboards. My nurse sounds lust like Mrs. Swan from Mad TV. I can make out about half of what she says if I concentrate.

Finally pills begin appearing. A few cans of Ensure. Mrs P goes out to get herself something to eat. I am so tired, I can't sleep. To be honest, I'm a little scared to close my eyes.

Once I get some food in me, I feel better. I call Mum and this time we are both a little more convinced. The nurses change shifts and a nurse who reminds me of Kathy Bates takes over. Not scary Kathy Bates, but big, sweet, earth-mother Kathy Bates. Things seem to be calming down. Mrs P goes home. More doctors. More clip boards. The phone rings. It's Ms Something or Other calling in regard to my Bank of Someplace account which is quite a bit past due and how would I like to resolve this account today? I explain that my odds of living till Christmas are so slim that I really don't care how she chooses to resolve the account. Then I hang up and resolve not to do any serious negotiating while on Percocet.

Today is Thursday. A lady I recognize from the radiation waiting room is at the foot of my bed with a wheelchair. I've slept well. She wheels me down to the treatment rooms and I get my last radiation treatment. They give me my mask as a souvenir. I say goodbye to the techs and the preacher and the lovely old lady from West Virginia. No time for sentimental goodbyes.

Back in the room, I feed myself. A young woman offers me a bath. I could use one, but I'm not sure I'm ready for that. I've never been bathed professionally before. We'll try that tomorrow.  Father T visits with me for a while, then we make Eucharist together. It is mete and right so to do.

More doctors. More pills. I'm supposed to be still and quiet. It's a little like balancing plates on your head all day long. Just shut up and don't knock anything over.

Mrs P spent the day in the big chair in the corner. We laughed more today. Laughed and worried. I wished there was room on the bed for her to lie down next to me. She perched up on the edge and fed me instead. Later a nurse showed me how to inject myself with blood thinners. Two tiny needles in my belly. My belly! I could stick my belly with knitting needles with no ill effect. I am very well cushioned down there. Those shots will be a snap.

Our friend Kim stopped by for a visit. I really enjoy her. Kim has a way of following her own bliss, and making the world better in her wake. I'm grateful she shared some of herself with us today. It was a good day for a little gratuitous affirmation of life.

Now it is late. My drugs are kicking in. Blood  chemistry changing. Clots thinning. Waiting In Cautious Vigilance. Just doing what they tell me and trying like hell to make sure that old Wile E Coyote doesn't  take that one extra step backwards into my inferior vena cava and go tumbling down to the bottom of ventricle canyon.

In other words, I have been charged with the task of living through the night. It isn't very ambitious, but it is terribly focused. That's gotta be worth something, don't you think?

Peace,

Pennsy

Sunday, July 18, 2010

#231: My Body at War With Itself

Last night I was sick again. This thing is not giving up without a fight. I was actually angry as I hung over the bowl. "Get out, you bastard," I mumbled between heaves. "You're not going to beat me. Get out." Mrs P thought I was sending her away at first, then she realized I was talking to the cancer. Sure it's crazy, but so is sitting on the edge of the tub with somebody who is puking his guts out. We all have our little madnesses. That's as good a definition of love as any, I guess.

I definitely feel as if this is the hard part. My body is revolting against the treatment pretty violently. The nausea is worse than it's ever been, and it comes faster than the drugs can keep up. My skin is really charred looking. I use the lotion that they gave me, but still look more like a burned french fry around my neck and upper chest. The fatigue amazes me. I think I'm probably awake for about five hours a day. The radiation is taking its toll.

My consolation is that if I feel this bad, the cancer must feel a whole lot worse.

Back when we made my original treatment plan, my last chemo was scheduled for tomorrow. Mercifully, I've been spared that third date. The cisplatin on top of the radiation was too much for my bone marrow to handle. Thank God. From what I've read and from what Mrs P's brother is going through, I think chemo is much harder on the body than this radiation I'm getting. Those people are the real cancer warriors. I feel like I'm way behind the front lines compared to some of my friends who are getting weekly infusions. Weekly, for god's sake! I don't see how they can live through it.

Been quiet this morning. Mrs P has gone to church. No stomach churning for me today. So far. I know better than to try to  predict the future. Two big events to hope for this week. I want to get to the park to see RENT. I also want to see my last radiation treatment on Thursday. The weather forecast is threatening all week, but that's typical late July weather in the Bluegrass. I'm just hoping for those late night storms that always make sleeping so pleasant. That will keep things cool and let the cast play their hearts out without worrying about the rain. Weather won't affect my treatments so much, though I'm always soaked with sweat when it's a rainy morning. I don't know if it's the humidity or if the damp just starts a kind of wicking effect in my skin. I know it's kind of ookey when I lift my bald head up from the plastic pillow block and it pops off with that wet sucking sound.

I have spoken with Jake about hacking into my blogger account. I've told him it's OK for him to write, but that he just needs to ask me first. I have a feeling his mamma may have helped him, but he is too loyal to narc her out. I can respect that.

Peace,
pennsy

Saturday, July 17, 2010

Guessed arthur

daddy;s blog was boring. ME wil rite blog for him. (ME is Jake!)
here is me sitting in leaves. leaves are not boring. they crunch and smell goood  and you can toss them with your snout.
Here is me on my first day wif mumma and daddy. mama put me in the kitchen sink and washed the stinkies off. Me no longer stinks wich is good cuz mumma caint put me in the sink anymore. Me is big now!
this is papa holding ME. me was a baby. papa was hairy. now pappa is not so much hairy and me is a BIG BOY now. Only mumma will hold me and rock me anymore...

This is my first potty in the snow. Mumma is goofy!!! it is in me's baby book.
this is me's duck. it used to talk now it is not talking becuz me eated its talker. oops.
This is me and Molly Dawg. She was me's first friend. Molly is in Heben wif Jebus. me knows that God and Jebus loves dawgs. specially Molly. she was mumma's and papa's first doggie and because of her me lives here now. Molly told me to watch mumma and papa cuz humans are sometimes "NOT BRIGHT". me tries very hard to watch them but they are not bright...

thid is me amd mumma on vacashum. we went to the FARM. uncle dug and cuzin mark let me walk in the woods and bark at cows and frogs. it was fun. me likes the fa4m.


this is me now. Me is verry growed up and purty. mumma sez this is my tyra banks model shot. me will be america's next top model real soon!
Me hopes this made up for papa's boaring blg.mebbe me will help him more often. me is excellent at everyting!


#229: Morning Thunder

Today began with a bang. First a flash, then a bang. We had a lightning strike very close to our house. Close enough that the fire engines went past our front door on the way there. I was relieved that they didn't stop to put out any burning trees in our yard.

Soon after that, Mrs P curled up next to me and moments later, I experienced the morning ritual that has plagued expectant mothers from time immemorial. No, I did not sing, "Oh how I hate to throw up in the morning." But I could have.

I have been pretty much unconscious for the rest of the day. Now here it is almost time for me to take my sleeping pills and I really don't know what the evening will be like.

Our brother-in-law has had a rough day of it, too. He was very sick this morning and wound up in the ER getting fluids for his dehydration. His therapy is all chemo and I don't envy him a bit. I may be miserable from time to time, but I sure don't suffer like some folks do.

We battle my own dryness with Gatorade through the tube and as much water as I can drink, which isn't much. It tastes terrible. I can't imagine trying to eat through this. When the doc told me I would need the tube because I wouldn't want to eat, I thought he was crazy. I have never not wanted to eat. What I imagined was that swallowing would become so painful that I couldn't eat. It never occurred to me that tasting food would become so unpleasant that I would rather have Gatorade shot into a hose in my stomach than have water on my tongue. Score one more for the doc, who I'm glad to say is scoring very well these days.

Beyond that, cancer was pretty boring today. I guess I should be grateful. Boring is pretty rare. I guess what's happening is that I'm skipping ahead to the next step. Now that treatment is almost over, there's not much left to do except wait to see if I'm better. I'm not looking forward to that, because it could be a long wait. In the meantime, I'm looking forward to some of these side effects abating, especially the nausea and the ability to taste. What I wouldn't give to enjoy a nice bowl of clear broth right now.

Now that would be exciting.

Peace,
pennsy

Friday, July 16, 2010

#228: What Keeps Your Heart Beating?

I finished Lance Armstrong's book today. It's given me a lot to think about. What is the purpose of cancer? How will it change me? What will I do with the rest of my life, once this part of the battle is over? Maybe more important than any of those, how do I hold on to what really matters, now that I've been given a second chance at life?

This is all a little premature, I guess. I do have four more radiation treatments left, then a year before I can be declared "cancer free," but it does feel as if something is coming to a close in the next few days.

He used the phrase "cancer fighter" to describe first a little child he met, then himself. I like that. I will fight the cancer in me, and I have an obligation to the people who come after me to fight for them, too. Maybe that will mean raising money. Maybe giving motivational speeches or rides to the grocery store. But somehow, I need to repay the kindness that has been shown me - the kindness that has saved my life.

There are two things in my life that I love more than anything - my wife and the theatre. I have devoted far too much of myself to other things in the past few years. Things I guess I thought I should. Being good at jobs. Being a good provider. Being a good Christian. Now I look back, I'm not sure what any of those things means. I know I want to love my wife, and I want to make theatre. That's who I really am, and it's probably the best way to do all those other things, too.

The thing is, Lance Armstrong's journey back to life is still going on, even after all those Tour victories, all these years. My own journey back is just beginning. I know now that it will never be over. No matter what the CT scans say. No matter if I spend the next twenty years cancer free or the next twenty weeks waiting to die, my journey goes on. So does yours. I know what it took to make me change course. I wish there were some way to convince folks that they don't have to wait for cancer to decide to start living. It took a death sentence to get my attention. The man gave me even odds that I would not live to be 55. I decided to take the bet. I decided to start living that day.

Will I succeed? Depends what you mean. If success means outliving that number, well yeah, I'm gonna do that. But that isn't really success, not to me. The question is will I be really alive for the rest of my days? No matter how many there are. That will be the test of my success. Every day that I'm as alive as I can be will be a success. That's how I'll know I've beaten cancer. Not just if my heart keeps beating, but why.

I did something that surprised me today. I dug out the resistance bands. It's pretty hot for walking, and my throat is pretty gummy for breathing hard, so I tried another way to move. I did some upper body exercises, curls and presses and things. Nothing strenuous. Just enough to get my heart pumping a little. Mrs P has pointed out that my weight is just about where it was when I was performing at my best back before I lost my job. I don't pretend that my fitness is back there yet. I can't squat my weight or run a 5K just yet, but I am a lot closer to the size I need to be than I was before I got sick. Who knows. Maybe it won't be long before Fat Man Running is an exercise blog again. That will be great.

But it won't be a blog about losing weight. It will be a blog about gaining life.

Just like it should have been all along.

Peace,

pennsy

Thursday, July 15, 2010

#227: Radiation Gallery

Jayna selects my mask...
To be honest, I don't have much to say today, but Mrs P did accompany me into the treatment room today to take some photos for the blog. I love it when she shoots photos because she has such a remarkable eye. She was a top notch lighting designer when we worked in show business together. Now she applies that same vision to the camera lens.

This is Jayna selecting my mask out of the collection on the rack in the radiation suite. No one but me is in the room once the big machine starts humming, but for the few moments before that, the place moves with quiet efficiency. I go to my corner and remove my shirt. Jayna selects my mask.

Ready to place the mask...
There is a clean white sheet on the table where I lay down. They put a small cover over my bare belly for warmth, then someone, (here, I think it is Shug) slips the mask over my head. The plastic frame outlines my head and shoulders and the polymer snaps match up to holes in the table where they secure it. It may seem as it this is a pretty claustrophobic moment, but it really isn't so bad. The mesh is big enough that I can open my eyes, and even speak fairly freely. I can see through it, and never feel like I'm boxed in. Of course, If I tried to raise my head, I might feel like an extra from a Spanish Inquisition movie.

Bound and gagged...
And here it is, in all it's glory. The mask is marked with tape and sharpie marks to help the techs line up with the laser cross hairs all over the room. You can't see them because of the flash, but there are to sets on either side of me and one that shoots down from the ceiling. Once I'm bolted in, they line me up with these marks, double check all the measurements (sometimes with big calipers, sometime with what looks like a tape measure from Home Depot) and then someone says, "Here we go!"

The room clears and the humming begins. First they shoot two X-rays, one from the right and one from overhead. Using those images, the final positioning of the table is done by remote control. These little nudges are accurate to withing a millimeter. Only when all the points and crosses and dots line up does the big radioactive accelerator start its trip around my head, shooting me with millions of volts of X-rays in just a couple of minutes. It's all quite a miracle, really.

Of course, the secret of my success is a much more low tech solution.

The Love of my Friends
Peace,

pennsy

Wednesday, July 14, 2010

#226: Keeping in Touch

Larry Neuzel is a legend in Lexington
theatre. His faithful lens has documented
nearly every performance in town for
decades and he captured this shot of
Ave and me before Merchant of Venice
rehearsal began.
The most wonderful thing has started happening. People are calling me with their good news. I took my usual after radiation nap this morning, and awoke to Jake breathing softly in my ear. Soon after, the phone rang. It was a dear friend calling to catch up and share some great news about a project she's working on. Not long after, another friend called to tell me about a job interview. Then I got an email from someone who got a job she's been looking for. Yet another call came in about some money that showed up so a pal could get the car fixed. Finally and old buddy called to update me on a high school theatre reunion that had lifted his spirits and helped to heal his soul.

It's great to get calls like these! I've always wanted to be the kind of person friends want to share good news with. Now people call me with good stories to help lift my spirits. What I'm realizing is that hearing good news is healing because of the joy I feel for my friends. They may think they're lifting my spirits, and they're right, but it is their joy that heals me.

I have always thought of myself as aloof, a strange man with a few close friends. Turns out I'm actually a strange man with a lot of friends. Some have taken my by surprise - people I would have never expected have become faithful in their contact and prayers for me. So grateful.

For other friends, it is harder. There are a lot of reasons why someone might have a hard time calling a friend with cancer. The disease has touched so many of our lives in so many ways. Parents lost. Lovers lost. Children. There are people who don't call whom I know love me, and it's OK. I understand. I wish I could call and say, "I know you're thinking of me and I remember when you lost your wife or your mom. I love you too. Just knowing how we feel is enough." I want to tell them that. But it's a little weird. Just want to let them know that we're OK and I want to get back in touch when all this is over. Maybe doing that will be the best way to say it.

Pride and Prejudice opens tonight in the park. I'm sorry that I won't get to see the second act, but I don't feel up to another late night just yet and my toothless cackling and hacking are not really crowd friendly. The show is going to be wonderful. Charming and graceful with magnificent costumes and career best performances from some actors I've known for a long time. I loved watching them work, so light and easy. It is a tribute to their director that even amid the discomfort of a rain delayed tech rehearsal, they were able to play with such joy. It was like watching a dance. If you are in Lexington this week, see it.

Peace,
pennsy

Tuesday, July 13, 2010

#225: Friends, Indeed

I've always thought of that old expression the other way. You know, "A friend in need is a friend indeed." I always understood it to mean that when someone needs something from you, they act like a true friend. I have a new way of looking at it. I'm realizing how many true friends I have now that I'm the one who needs something. My friend L came over to hang out today. We laughed. We played Scrabble. I slept. She made an origami box to entertain me. I'm sure she could have found a more pleasant way to spend her afternoon than listening to me wretch and watching me squirt milk shakes into my belly, but she spent it with me.

What led to L's visit was a change in a change in plans. A few days ago I posted on facebook that I needed a pennsy-sitter. Mrs P was planning on going out of town.Several wonderful friends volunteered and we were ready to coordinate the project. Over the weekend I had a couple of rough spells and Mrs P decided that she would stay home. Yesterday was a great day, and we agreed that I could handle her being away if we could get someone to stay with me for the day. I had already told everyone that I wouldn't be needing them, but one phone call to L and I had adult supervision for the whole day.

She showed up at 10:00, loaded down with laptop, Scrabble, even arts and crafts. She reminded me of the occupational therapy director at the nut house. We watched The Daily Show and Colbert Report, then played some games. By that time, I was pretty worn out, so I napped and she fussed around the house, dusting and washing up dishes and things. When I awoke, my meds were ready for me and my lunch was ready to squirt. In the afternoon, I slept some more while she read, then she offered to show me how to make a little paper box. It was silly and fun. Now, we're waiting for Mrs P to return home. L is typing emails and I'm chatting with you. It's been a nice day. A gift from a friend to a friend in need.

Yesterday, I called my friend D with some news. We are both following the progress of a theater that's being renovated here in town. I drive past on my way home from treatment. Yesterday I was excited to see a sign company crane hanging the new marquee, so I called D to tell her the news. She told me that she had been invited to see a dress rehearsal of the next play at SummerFest, Pride and Prejudice. She offered to go with me if I felt up to it. As I said, yesterday was a good one so we made plans. We had a wonderful time together, the play is charming and engaging, and Mrs P got a few more hours off from care giving.

Speaking of which... I just read the chapter in Lance Armstrong's book about how his relationship with his girlfriend ended once his chemo was over. I think I understand a little better now. Care giving is such a total task. The person with cancer is fighting something tangible, something inside them. The caregiver is fighting something more abstract. Something "out there." They are very different perspectives, but both demand great effort and focus. It is very easy for us to wear one another out. This is not uncommon among people who survive treatment together. It is not a path I want to imitate!

So giving my bride a respite from time to time is really important. I want her to be able to get away from this thing now and then. Maybe that means spending time with another friend or figuring out how to juggle all the mechanics of feeding myself. Maybe it means finding a friend indeed who's willing to spend a few hours watching me sleep. Whatever it means, I am so grateful to D and L for giving Mrs P the chance  to rest. And for all the laughter we've shared over the past two days.

I did learn something, though. Yes, I can feed myself quite sufficiently, thanks. I don't need Mrs P resting her hip against mine, watching as the plunger gently pushes nutrition into my stomach. I don't need her to wipe up the spilled drops or to pat my cheek when it's all finished. I don't need that. But I really miss it when it isn't there. All this time, I thought she was giving me dinner. Turns out that was the least of her gifts. I'm glad she got this rest, but I'm glad she's coming home, too.

Peace,
pennsy

Monday, July 12, 2010

#224: Patience, patient...

Waiting and doing and waiting. That's what it takes to kill cancer. There are a handful of things to do. Let them shoot your veins full of poison. Take the pills. Soak up the radiation. But in between, there is a lot of waiting. It isn't easy being a patient patient. That's why I'm always making up little things to do. Like peeing out the cancer. Or sweating it out.

Last night, while reading Lance Armstrong's book, It's Not About the Bike: My Journey Back to Life I noticed that he did the same thing. Every trip to the bathroom, every cough became a way for him to shove the cancer out of his body.

When you study acting, they teach you that active choices are better than passive ones. It is better to DO something than to try to BE something. I imagine athletes have a similar mindset. That's why I've started calling myself a hunter. I want an active objective to pursue.

Active goals give you focus. They help you stay single-minded. But they can also make you miss some important stuff. Mrs P had a pretty rough weekend too. Watching the man you love puke his brains out every afternoon can do that to you. She really needed someone to be there for her, and I couldn't do it. Coudn't? Wouldn't? I'm not sure. There are times when it seems to take all I have just to keep my own head afloat. That's just a reality that I have to recognize.

But I also know that the woman I love needed something that she didn't get from me. That is the worst part for me. Worse even than losing my teeth. It's watching how the people who love me suffer because of this disease. I've been thinking a lot about what I'm going to do once this cancer is out of my house. I think I owe the universe something. Maybe it's this - maybe I can help the people who love people with cancer. This life demands so much from them. Maybe I can help when the patient runs out of patience. Maybe that's a way I can help to give some meaning to all this hurting I see in my Mum and Mrs P. I'm not sure.

I learned something else while reading. I skipped a step. One of the stages of grief is "bargaining." Like when you say, "OK God, take away my career, but just let me live," or "All right, I won't act anymore, but let me direct." I haven't really gone there. I decided early that if I was gonna make it, there would have to be a reason for me to live, and for me that reason is acting. I made up my mind that I was going to beat cancer and get back on stage. That's not negotiable. Mrs P has already started scanning the casting notices looking for roles for me. I have my eye on a tasty one, but it's a secret. I'll let you know when it happens.

Had a good meeting with the Radiation doctors today. I asked the obvious question - one I guess I haven't had the nerve to ask before. "Am I getting better?" The doc says he thinks so. Not the most committal answer, but I'll take it. Turns out that my particular treatment path is a little hard to measure midstream. If I hadn't had the surgery first, we'd be watching things shrink and disappear. As it is, the stuff we're after is invisible anyway. We're chasing a cell at a time. If chemo were the core of my treatment, we could watch the blood level numbers and they would tell me if things were working. Instead, chemo is really only there to boost the effects of the radiation. And how do we know that the radiation is working? Well, we don't know directly. Indirectly, we can tell that it's killing parts of me. My throat lining, my salivary glands, my  beard. If it's killing all these, it's also killing the cancer. The doc said this morning that if I weren't exhibiting all these negative effects, that would be cause for concern. The irony did not escape me. They know I'm getting better because I'm getting so much worse.

But don't let's overdramatize. I know I'm getting better because I just know. I realize that doesn't make any sense and might just as easilly be wishful thinking as anything, but I can feel my soul getting stronger. The part of me that the radiation can't burn and the cancer can't crowd out is getting more and more grounded every day. That's the change I've been waiting for.

Peace,
pennsy

Sunday, July 11, 2010

#223: Nobody's Victim

Nobody's "Victim"
I'm finally well along into It's Not About the Bike by Lance Armstrong. He's been in my stack for a few weeks, but my attention span has been pretty short. I just decided to bite it off a little bit at a time.

The story is all you probably imagine. Part sports memoir, part cancer survivor tale. It is the story of an unconsidered life brought up short by the disease that can't but get your attention. It is a great read about a man who grows into himself in a thousand ways. I'll have a lot more to say about it as I draw nearer to the end.

For now though, there is a phrase he used that caught my eye. He said that the day he started chemo, he knew his life as a cancer patient had begun. "Cancer Patient." Those just aren't words I've used to think of myself. Nor have I thought of myself as a cancer "victim." Not a chance.

Cancer tries to sneak up on you with a little fatigue, a little swelling, maybe a strange not quite right feeling, but the day you catch it, cancer loses the upper hand. The day we exposed it for what it was, I became a cancer survivor. It would not take me unawares. I would not be a helpless victim. I became a cancer survivor that day in the recovery room after my surgery.

But more than that. Once I survived the sneak attack, I had a choice. Would I be merely a survivor, or would I be a victor? I decided that I would not let this think kill me, that instead, I would kill it. I became a cancer hunter. Mrs P and I read all we could. We watched YouTube videos. We read articles. We learned cancer's character and habits. And we assembled our team.

You don't hunt big game on your own, and cancer is the biggest. We gathered the doctors and the nurses, the nutritionists and scientists, the head shrinker and the heart warmers. We put our team together with one thought in mind. Find this cancer and kill it before it can kill me. And that's just what we're doing.

I have become its assassin. My friend prays for me while she weeds her garden. That's a good thing because it is a big garden and it has been a rainy season. That's a lot of prayers. She imagines as she hoes the weeds and leaves them to whither in the sun that she is pulling the cancer out of me. She is a hunter, too. Every time Mrs P pushes the plunger that fills me with food or picks out the pills that keep me strong enough to fight, she is pushing the cancer out of me. Even the nausea that sends me retching to the bathroom in the afternoons is part of the battle, part of getting the poison out. Every spasm is another victory for me, another defeat for this thing that will not be my master.

So don't call me cancer's patient and don't call me cancer's victim. I am neither. I'm winning the fight every day. This thing that has tried to take my life and body and family will not win us, it will not become me.

I will not will the Tour de France. But I will win this battle. I will defeat this cancer. What are my odds?

100 percent.

Peace,
pennsy.

Saturday, July 10, 2010

#222: In Stillness

In stillness
Thoughts are not so lofty
More
Here
More present

Waking with a gentle opening
Not a start
In stillness
As if only a part of me
Wakes

After the storm
The tears
The Cries in the Dark
Comes stillness
Welcome quiet fills the rooms
Home is home again

In stillness, I whispered your name
And you were here beside me
Your eyes moist with sleep and worry
Mine wide with fear and loneliness
Together we held one another in stillness

There is a kind of quiet that transcends a simple hush. When I've had a difficult spell, like the one I had this afternoon, the worst I can remember, the sleep that follows it is beyond sleep. After a few hours, I open my eyes and my body has not moved an inch. Every finger is just where I left it. Mrs P says at times like this she has to watch me to make sure I'm breathing. The snoring is gone with my tonsils, apparently. The tossing and turning are no longer an option, the PEG tube keeps me on my back. Now that I've lost some weight, I can sleep more comfortably so I don't need to move around much. What it comes down to is that things tend to stay where I put them. I don't fidget around much anymore.

Today, I awoke in the quiet after that storm. Mrs P was asleep in the next room. I could hear her breathing, (she swears she does not snore, but she does have tonsils...,) and I lay there in the light of the afternoon. The earlier gray rainlight had passed and the sun was drying the world. Jake had his chin on my foot. It was so very beautiful. When she awoke, Mrs P brought me my "feeding" and we went about the business of nutrition quietly. She has endured so much through all this. Today's nausea was as bad as she's seen me, too. Seeing the tired in her eyes pains me and I wish there were a way I could make it easier for her. For now, the best I can do is give her these quiet moments when they come. And remind her how grateful I am, how very much I love her.

She rolled over in her sleep the other night and asked, "Would you still love me if you didn't need me so much?" Startling question. It made me think of all the celebrity survivors I keep reading about whose wives get them through treatment, then these guys go find some co-ed and throw over the people who gave them everything. I don't get that. Rather, I asked myself, "Could I need you this much if I didn't love you?" Would I even allow you to pay such a cost without my love? The question was a shock, but it was easy to answer.

Yes, my darling. Yes, I love you, no matter what. Because I love you. That's why.

Peace,
pennsy

#221: Little Dignities

When I get out of bed, I try to always put on my shoes. I'm not sure why. Partly it's that Jake is always leaving some sharp, chewed up piece of something or other lying around and I don't want to step on it. But I think it's also got something to do with keeping a little dignity. I don't want to be padding around the house like a sick person. Lacing up the Adidas makes me feel more like I've got somewhere to go, even if it is just to the bathroom and back.

Little dignities. That's something my vanity won't let me quite give up. Like tipping my ridiculous, huge sun hat to a lady. Like tucking my shirt in or tapping my walking cane on the sidewalk as I do my tenth of a mile hike around the block. Or keeping myself shaved. I want the world to know I'm still a man in here. Maybe I want to remind myself.

Beware the pink and blue
bunny people!
Then there are the other times, the silly times. Yesterday, Mrs P couldn't find her blue bandanna. Later when it turned up under my pillow, I didn't want to lose it, so I put it in the one place I knew I wouldn't forget it. This led to one of those arm's length self portrait sessions that I have come to treasure so much. Mrs P is a better photographer than I, even when she can't see what she's doing, so she usually does the snapping. In this case, she also stole a smooch. I was happy to give it up.

We're setting up a field trip for Mrs P this week. She and her sister are going to try to visit Big Brother 1, and we need Pennsy sitters. Generous friends have volunteered and we'll coordinate all that. I am so touched by the easy way people stepped forward to "take a shift." I can't tell you how it feels to be as loved as I am. I honestly had no idea...

After yesterday's blog about how weary I was, I went to bed for a while, as promised, but it wasn't very restful. I decided to try putting my feet in motion and wound up taking a walk in the end of yesterday's rain. It was a beautiful, humid bluegrass afternoon. The rain dripped from my big straw hat as my cane tapped the concrete and I made my way around two short blocks - far as I've walked for a while, I think. I had to stop and lean a couple of times, and I was pretty soaked by the time I finished, but it was a great feeling to be really tired, not just used up. As I made my way to our corner, the grill of the Honda was heading up the street. Mrs P was on her way home from taking Jake in for his nail trim. His behavior was exemplary, she says. Seeing them get out of the car gave me the strength to carry myself through the front door, and a real nap followed, not one of those restless flutterings between awake and asleep that can be so frustrating. It felt like a nap I had actually earned.

Found some old photos of Jake today. He really is an insanely beautiful dog. Also an idiot, but that just helps him to fit in. There is a special quality to Golden Retriever's coat in the autumn that just makes them look like a huntin' dog. Jake might be trainable, he is very smart and has a soft mouth, but neither Mrs P nor I have the knowledge or the inclination to take him out in the woods to shoot birds. Guess he'll just have to settle for being pretty. Just like his papa...

Peace,
pennsy

Friday, July 9, 2010

#220: Wiped Out

They told me that the second round of Chemo would hit a lot harder than the first. I just checked my posts from the first week. It was pretty bad then, too. Today I sat in the bathroom and could barely muster the strength to make anything happen anywhere. The good news is that the nausea is not so bad yet. I'd be happy to skip that part if possible.

The biggest symptom I'm having right now, besides the gummy throat, is fatigue. Like wow, fatigue. Like, let me just stop walking right here for a minute to recover from those ten steps I just took. This morning, I was doing the old man walk, for sure. Shuffling steps. Working hard to keep my head up. It's funny. I don't feel any pressure to put up a front unless I'm in view of someone else who has cancer. That's when I want to look my best. Someone who feels like me doesn't need to see some other schmuck schlepping himself down the hall.

"How do you feel, today," Shug asked. She's one of the radiation techs. She has some unpleasant sounding nickname that thay call her, so I decided she should be "Shug" as in "Sugar."

"I feel one hundred times better, Shug. Of course, I still feel like crap. But a much bette class of crap today."

I try to always shout a joke down the hall when they call my name. It usually gets a laugh in both directions, waiting room and treatment area. We need all the laughs we can get down in those lead lined rooms.

Mrs P and Jake just went out for a ride. He needs to have his nails trimmed, and he's incorrigible about letting her do them. You'd think she was trying to cut off his toes. I know it can be a dicy operation, but she's been grooming animals for many, many years. Jake just won't have any of it from her. We're hoping that Dr D's magic touch will be enough to calm him down. Meantime, I'm staying quietly at home today, too tired to move.

Gonna have to cut this post short. I'm breaking a sweat just typing to you today. Back to bed, I guess.

Peace,
pennsy

#219: Evening Prayers

Lord, you awakened me tonight with a burning heart, not for my own suffering, but to remember those I love and who love me. Thank you for the chance to lift up your children in prayer on this holy evening.

Bless my wife M tonight. Her sleep is so deep and restful, yet she stirrs at a sigh from one of her family, caring for us though barely awake herself. Grant her your peace and strength as she continues to hold us together. Help me to minister to her, even as she blesses me each moment.

Be with Mum tonight. These are difficult nights for a mother, unsure of her son's fate. Even as your own blessed Mother suffered with you, she suffers. Grant her your comfort and peace tonight. We know that our every moment is in your hands. Help us to trust one another to your care and grant us peaceful rest.

Bless D, BJ, C, T, A, M, C, M, T, and all in my family who sleep with cancer in their beds tonight. keep them safe from the anxieties of the night that would rob them of their rest, and shake their hope in your salvation. Lord, the night is long, but your love is longer.

Merciful God, do not forget those who are seeking the help of your doctors and healers. Guide our judgement and grant us good counsel so that you might be glorified through our continued lives. Be with us when we meet, grant us strength to lift one another up in laughter and in prayer. Nurture our hope. Feed our faith.

It's a lot to ask, God. I don't usually like to be so demanding when we talk like this, but there's a lot to be done, and I have made promises. Bless R and J and P as they struggle under burdens that are so unfair and seem so cruel. I don't know if this is your fault or not, but I know that your blessings are sure and your mercy is sufficient to give comfort to us, even when it feels as if all creation is against us. Please keep their hope alive.

Be with "Fadda T' as he ministers to your children. We are an unruly bunch, often difficult to manage or understand. bless him with your wisdom as he seeks to be our good priest.

There are others on my heart tonight, Lord. Names I know and names I've forgotten. For C who is afraid tonight. For K who is so angry. For D who doesn't know what's going to happen to her husband, or to her if she loses him. For R who, for all I know is awake and praying for me right now. I wouldn't be the least bit surprised. You know what they need, God, though I don't. Cover them with your protection to give them peace tonight. Tomorrow's troubles can wait for tomorrow.

For myself? I'm not sure what to pray for myself. Help me to live. Keep me faithful. Let me act again. Guide my steps so that my life as a survivor will be more full of meaning, of purpose, of LIFE than the one I have been living. Make me a good husband, son, friend. Lord, continue the mighty work you are doing in my life. I want to be your man. In your time and by your grace, I beg you to make it so.

Thank you for all the blessings of this life, and most especially for your love. Teach us to love as you love us.

And finally, I ask a special blessing on all who share these words tonight. We come together in fellowship here, drawn by things we may not understand. But whatever brings us, we have the opportunity to love and know one another better in this place, and in so doing, we come to love and you. Be present here with us, Lord, and when we part, go with us that we might take the light you give us out into the world.

I ask a lot, but I ask in the name of the one who gave all, my savior Jesus Christ.

Amen

Peace,
pennsy

Thursday, July 8, 2010

#218: "I Prayed for You This Morning."

That's how he greeted me, the tall, handsome preacher with whom we share our early morning radiation appointment. He and I were both awake early this morning. Difference was, I was thinking of myself. He was thinking of me. Mrs P and I have come to know several folks in the morning.

There's the couple who are only two days away from their last treatment. He goes back, she smiles and chats about their farm and how long they've been married and how much she loves him.

There's the fellow who comes by himself. He has an ugly looking open sore place on the back of his head. It looks painful, but he is always laughing and joking.

Then there's the lovely lady whose oral cancer was so bad that they had to remove most of her gums. She had her chemo changed yesterday because the side affects were hurting her so much.She felt much better today, and I was relieved to hear it. She always follows right after me to the treatment room, and one morning she gave me a high five on her way past. It was the highlight of my day.

I don't know most of these people's names - the man with one ear, the man whose jaw is missing, the lady who sits quietly waiting for her momma every day.  We don't know one another's names, but we know our stories.

Those stories are what binds us. Always, always it is our stories that bind us.

And this morning, he prayed for me. That is his story. His pain leads him to the sufferings of those he loves, though he barely knows them. Today, I'm praying for him, the handsome preacher and his beautiful wife. We share a diagnosis and are on very similar treatment plans. He and I began and will finish at nearly the same time. Our side effects seem to run parallel, and our good and bad days even coincide sometimes.God bless him. We are walking a dark road, but we are walking together.

That's our story.

Peace,

pennsy

#217: Breakfast in Bed for Pennsy

Tuesday in the Park
with Pennsy
Blogging in the early morning. Well, relatively speaking. I've been awake off and on since about 3:00 today. The Weather channel says it's 71 degrees in the Bluegrass, predicting a high of 94. Seems like a good day to get things accomplished early.

My sleep is a little out of whack, what with staying up 'till midnight on Tuesday to watch Merchant rehearsal. I don't regret a second of it, but it has thrown my routine off a little.

I've been trying to remember what exactly keeps me awake when I'm lying there in the night. Tonight it was hiccups. I start getting these hiccups that lead to nasty heartburn, really uncomfortable. It isn't something I can take a pain pill for because it isn't a chronic thing. It only happens when my stomach spasms which only happens when I move, or breathe, or sip water, or swallow. Antacids don't help because it isn't really acid reflux, I don't think. It's just more like belly trying to turn itself inside out. Hard to describe. Not nausea, not really. But very uncomfortable and not something you can just go back to sleep through.

Another thing is this nasty taste. Not really a taste in my mouth. It's actually the taste of my mouth. The doc explained that the white coating all over my tongue isn't thrush any more (great news, by the way) but it is dried saliva. It's like when you exercise out doors and your mouth starts to dry out and get sticky inside. There isn't enough water in my mouth to thin the mucus, so it just sort of coats everything in this slippery film. That's good and bad. Good because it protects all those tissues that might otherwise dry out. Bad because it tastes just really bad. This is all credited to the radiation, the only really consistent side effect that bothers me now that the magic swish 'n' swizzel is doing it's numbing thing on my throat.

I finally got up and fed myself today. That's kind of a pathetic milestone, I guess, but it felt like quite an accomplishment at the time. Here's how I eat breakfast. First I get a large clear carafe looking thing that we got from the doc and fill it with two cans of Ensure. Then I get half a glass of clear water and a 60 mm syringe. That's a big one with a plastic tip, no needles for me, thanks. Now I take the whole kit to the bedroom because I have to be lying at about a 30 degree angle. Too flat and the food washes up in to my esophagus and maybe even my lungs. Too steep and back-pressure builds up in the tube and stuff gushes back out. Yuch, on both counts.

Percutaneous Endoscopic Gastrostomy
(PEG) tube
 So I get myself propped up in an appropriate posture and roll up my shirt, exposing my still healthy belly and the mysterious PEG tube. It's about 10 inches of 1/4 inch clear plastic tube with a round bolster that looks like a big rubber washer to hold it in place on my stomach, a clamp to squeeze it shut, and a little hub at the end with a small hole and a large hole. Each hole has a rubber stopper that flips up so you can put food or meds inside. When I eat, I put a paper towel over the washer to catch drips. Then I draw food up into the syringe, open the stopper, put the syringe into the tube, open the clip, and verrrry sloooowly inject food. I take my time doing this so that I don't spill any. It's not cheap, and it's very sticky. When the first syringe is empty, I hold the tube straight up, pull out the plunger, let the fluid run past the clamp,and close it all up. Then refill and repeat. It takes me a lot longer by myself than when Mrs P helps since I only have two hands, but I have plenty of time, so no problem there. Besides, it feels good to take care of a few things for myself. And getting something in my belly always helps the hiccups.

When I'm done, I rinse a couple of syringe-fulls of clear water through the tube to keep it clean. I'm pretty conscientious about this, what with it being a little hose running directly into my innerds and all. I've put enough weird stuff into my stomach in the usual way over the years. No use letting anything sneak in through the side door.

I don't do the pills on my own. Not when we've got all the chemo/nausea/steroid/phych meds going at once. Mrs P and Mum's trusty chart keep me on track with that. Besides, there are a couple of liquids that need to be mixed and my hands are too shaky for compounding concoctions with little cups and spoons. So, the morning ablutions are now complete, just a little clean up left to do, then it's off to the clinic for some more radiation and a new day. Hope yours is good. Mine will be...

Peace,
pennsy

Wednesday, July 7, 2010

#216: The Merchant of Venice

A difficult play done well is a joy to see. They don't come much tougher than Shakespeare's tale of revenge, race hatred, and love doubted, The Merchant of Venice. This post will be neither a review - which would be premature, since the play opens tonight - nor an explication of the texts, which I have no intention of working hard enough to write. Instead, I want to share some observations on the difficulties of bringing this complex and in many ways deeply unsatisfying script to the stage.

First, and most obvious is the problem of Shylock, the Jew. To our 21st century minds, the money lender's treatment is beyond horrific. While Shakespeare almost certainly intended the role to carry much of the villain's burden, the epithets and antisemitism of Venice make it very difficult to root against him. We don't want to see him win his bond, but at the same time, we hate to see him lose when the odds are so stacked against him from the start. It is hard to say how I would approach this matter as a Director. The Actor's job is a little easier. Still, making this powerful character believable in a world that renders him so very powerless is a daunting task.

Then there is the matter of Portia, another character of great energy and force whose circumstances compel her to play the weak woman. Portia's story comes in three chapters. First the contest of the caskets and her subsequent marriage. Then comes her courtroom scene, one of Shakespeare's most masterful "trousers roles." Finally, there is a reconciliation of sorts when the couples are reunited in Venice and the mystery of the rings is revealed. Like Shylock, Portia is trapped by the role in which life has cast her. Her father's chattel. Her gender's prisoner. But finally, her husband's master. The manipulation she uses to persuade Basanio to break his vow to keep her ring is hard, but not irresistible. That he is persuaded by his friends to do so reflects poorly on him, but doesn't really make Portia particularly lovable, either. Again, the Director has a mountain of a choice to make. Do we look for the comedy in the role reversals at the heart of Portia's story, or do we play her as a powerful woman struggling to keep some element of control of her world? The choice that is made may not be as important as the fact that a choice be made, and the audience not left to wonder.

Lastly there is the Merchant himself. Antonio is a melancholic fellow driven near distraction by his financial ruin and the weight of the bond he so recklessly makes with Shylock. Again, the antisemitism of the play becomes a major obstacle. We want to root for Antonio, but his treatment of the Jew is so repugnant, cursing him to his face, pulling his beard, spitting on his clothes. It is impossible to want to see this arrogant man be victorious. But Antonio is ultimately redeemed by his love for Bassanio. In his willingness to sacrifice his life for his friend, he wins just enough of our hearts to make us want to see him keep that pound of flesh that he has promised to give away.

In the end, no one really gets what they want out of The Merchant of Venice. Shylock loses his fortune and his daughter. Portia gains a husband, but loses her faith in him. And Antonio, who should come out smelling like a rose, is left with a strangely unsatisfying victory. He has saved his life and regained his treasure, but lost something that is harder to pin down. His honor? His manhood? His faith? Again, choices that are left to the Actor and Director. Shakespeare chooses to leave the audience hanging, just as his characters seem to be. Not even we are allowed the easy resolution we might hope for in a less challenging play.

I watched the final dress rehearsal of Merchant last night with Mrs P and our friend Tami. It was lovely to be in the park and just wonderful to be among "my people." There really are no people like show people. It was a joyful reunion for me. One I hope to repeat again and again as I get back up on my feet. In the meantime, if you're on your feet in Lexington this week, I encourage you to move them to the Arboretum to have a crack at a fine production of a play you are not likely to see played this well anytime soon.

Peace,
pennsy

Tuesday, July 6, 2010

#215: Navigating the Tropics of Cancer

Looking ahead is always a little tricky. The seas change pretty quickly when you're sailing through cancer treatment. Of course, that's really true no matter where you're sailing.

We have big plans for this evening. We're dragging out to the park to see some Shakespeare. I would prefer to be there opening night, but I think it would be prudent to avoid the really big crowds. We'll both be up much later than we're used to, but it will be worth it. Besides, the doc warned me today that the second chemo treatment I had on Saturday is likely to hit much harder than the first one did. I don't want to miss the show by putting it off.

Did have a kink in a longer range hope today, though. My teeth are not gonna be back anytime soon. Well, they're not actually coming back at all, but my store-bought choppers are going to have to wait for at least a couple of months after radiation. I was hoping for ribs at Labor Day. This news bumps things back to tacos for Thanksgiving. It also delays any hopes I may have for returning to the stage this year. My diction is, shall we say, not as crisp as I might prefer it to be. Still, there is hope out there, and I could always pick up a directing gig if one comes along.

Got some great news today. St Joseph's Hospital where I had my surgery has offered me a very generous financial aid package to help with my medical costs. I don't know if I've mentioned it, but the care I received there was just superior. No one ever made me feel like a charity patient. I couldn't have been treated better if I were the bishop. Now I'm just an AFLAC check away from paying off a really big chunk of my expenses. Next stop, the medicaid office to see what they can do with my chemo/radiation treatments at the Markey Center.

So, it's supposed to be the hottest day in the world, today. I'm hoping we're past the worst by the time we pack up to go to the park. Only 83 degrees right now at 11:00 AM, but tomorrow may be a record-breaker for us. I won't be complaining to Mrs P about the air conditioner today. But I do want to get a little walking in before the weather gets much more brutal.

Tomorrow, I'm hoping to have a preview/review of The Merchant of Venice for you. Till then, stay cool and be at

Peace,
pennsy

Monday, July 5, 2010

#214: Walking Away From Cancer

Like I been rode hard and put up wet. That's what cancer tired feels like. Worned out without getting a chance to cool down. Like all the energy has just been sucked out of you. I woke up in time to go back to sleep this morning. When I opened my eyes again, it was noon-thirty and my head appeared to be swiveling around on someone else's body. I wanted to move, I think, but my legs and arms seemed to be disconnected. Not paralyzed or numb, just not open for business.

Fatigue is the universal symptom of cancer, so they tell me. You may not feel sick when you have cancer, but you will feel tired. Your body is working so hard to deal with this alien that's growing inside you that you don't have the juice that you need to live the rest of your life. I started feeling tired immediately after I went back to work in November. Naturally I assumed it was the change from from 15 months of job hunting to 40 hour weeks that was wearing me out. But I never did get my wind back. I believe that my body was already at war, I just didn't know it yet.

Once the battle was joined, I had surgeries to recover from, radiation to absorb, and chemo therapies to process. There are steroids, anti fungal drugs, antibiotics, pain meds, and my psych meds. I'm a big boy, but that's a lot for me to carry. It wears a man out.

In Cancer Fitness: Exercise Programs for Patients and Survivors, Anna L. Schwartz proposes the remarkable idea that the best solution for cancer fatigue is exercise. It makes sense. When you're healthy, a brisk walk gives you energy. A really tough workout can leave me wiped out and sore, but I always feel better the next morning. So I've been taking Schwartz' advice. When I feel tired, it's up and around the block for me. It's not a long walk, it's not a fast walk, but it does get my heart rate up and lets me break a little sweat. I always feel more energized when I've finished.

Now there are a couple of caveats here. Number one: I don't walk when I'm feeling pukish. I don't want to be barfing all over the neighborhood. Someone is likely to call the rescue squad on me. Number two: I don't walk when I'm feeling really shaky, weak, and off balance. A fall outside with the accompanying scrapes, cuts, and potential infections would be a disaster for me in the middle of my treatment. And finally, number three: I don't walk farther than I comfortably can. When it's 86 degrees out like today, I go easy and keep it short. On cooler evenings when the sun is lower in the sky, I might pick up the pace and hike the long block.

This helps me in a lot of ways. It keeps my circulation up. Too much sitting around is a bad plan, especially for a fat man. It increases my water intake. When I drink more, my kidneys work harder getting all that nasty stuff out that the chemo pumps into me. I get hungry. When I eat more, I keep weight on, very important in battling cancer. And finally, it helps me to maintain muscle mass, a chronic problem with survivors who receiving treatment.

Maybe more important than what it does for my body is what exercise does for my head. It's a normal thing I can do. I can't go to work or sit out in the sun or take a long drive, but I can walk around the block. And soon I'll be jogging it. Not long after that, I'll be running miles again. Exercise reminds me that there's another chapter coming. I won't be running toward it today, or tomorrow. But by God, I can walk there.

Peace,
bob

Sunday, July 4, 2010

#213: Side Effects

Shakes. That's what I've got today. One of the drugs that comes with my chemo treatments is a steroid that tastes like peaches. I think that's the one, anyway. It really hypes me up. This is a good thing. One of my friends warned me that the steroids turned him into a real jerk. They just make me annoying. I finally wore Mrs P out with my fidgeting and chatter so she put herself down for a nap. I'm typing, but my hands are really shaking. Don't think I could handle a teaspoon full of soup right now.

I've been very lucky with side effects. I appear to have a sunburn from my cheeks down to the middle of my chest. That's from the radiation. Also the mucosa thingy I've described. Nothing earth shattering. Fungal and other biotic infections that are pretty quickly killed off. Oh, and everything tastes like dog butt.

My chemo drug is called Cisplatin. It's a pretty old drug, but still effective. The list of side effects is daunting. I've had only the highlighted ones.

•Nephrotoxicity - causes damage to the kidneys

•Neurotoxicity - causes damage to the nerves
•Nausea and vomiting - one of the most likely to cause severe nausea and vomiting
•Ototoxicity - hearing loss which is currently not treatable
•Alopecia - hair loss, not a common side effect
•Electrolyte imbalance - causes various problems with cell operation
•Decrease of blood cells in bone marrow
•Thrombocytopenia (low blood platelet count)
•Leucopenia (low white blood cell count)
•Myelosuppression (decrease in bone marrow effectiveness)
•Changes in how food tastes
•Frequent diarrhea
•Numbness in the extremeties
•Extreme fatigue
 
Today I went back into the infusion center to get a shot of something whose name I didn't catch. Grace, who only called me "Hon," today - I was a little disappointed - told me the name then mentioned that the syringe full she was about to give me cost $6800. I kind of blacked out after that. The drug is intended to boost the functioning of my bone marrow and to get my white blood cells back in business. Grace really is a good nurse and an artist with a needle. I fled absolutely nothing as she stuck me in the left triceps and injected the mystery drug. Some people tolerate it pretty well. Others develop flu-like symptoms including aches that may be severe enough to require breaking out the Percocet. I don't want to be sick tomorrow. I want to go to the park to see The Merchant of Venice tomorrow night. That's the final dress rehearsal and I'm trying to avoid the really big crowds later in the week. Cancer is all about adjusting. And watching Shakespeare stoned isn't the worst thing in the world. I can think of several productions I've seen that would have been greatly improved by a few pain killers.

We took a trip to the Wal-Mart today. I prefer Meijer, but didn't feel up to the cross-town drive. Since we needed both groceries and medical supplies, we sort of walked cross-town instead. Water was in one corner of the store. Isopropyl alcohol and Ensure was in the opposite corner. Naturally there is no path "as the crow flies" from one end of the store to the other so we went arooooound. Twice. By the time we hit the check out line, I was pretty beat. We had a coupon for Ensure which our cashier forgot to scan. She looked pretty lost when we pointed it out, so we volunteered to go over to the customer service desk. Since that's my station at Meijer, I spent the whole time critiquing the disorder and the cool behavior of the person behind the desk. I would have treated us much better. Just sayin'.

Back home then, a two can tube feeding, and here to chat with you for a while. Someone posted a great scripture on the Motley Fool today. I loved it so much that I put it in my bio on this blog. I'll close with it.

We are afflicted in every way, but not crushed; perplexed, but not driven to despair. - 2 Corinthians 4:8

AMEN!
Peace,
pennsy

Saturday, July 3, 2010

#212: Stream of Chemo Conscousness

A little experiment today. I was at the chemotherapy infusion center for 8 hours, so I'm a little goofy. Consequently, my usually tightly organized, incisive insights may be a bit disjointed. But I'm to the point where a day without writing is a day unfilled, so here goes nothing.

Started the day with vitals, weight, pressure, temp all acceptable. Then the receiving nurse drew yet another vial of blood. My arms are starting to look like props for Sid and Nancy.

Met Grace, my chemo nurse for the day. She was sweet and very country. She kept calling me "Punkin'" which I found slightly grating for no good reason. We had to wait for the hapless Saturday morning on a holiday weekend lab techs to run the analysis on my blood before starting the long process of dripping.

Tried to start reading It's Not About the Bike by Lance Armstrong. Got a few pages in, but ran out of steam so I turned on the History Channel and watched some programs about the American Revolution while Mrs P and I worked on the crosswords. She pretends not to know some of the answers so I can feel smart about spouting them off. It's pretty generous of her, actually.

Grace returns to tell us that my @%$!* white count is still too low. She'll call the doc and see what she wants to do. This sends me in to a funk from which I never really recover.

Grace comes back to tell me that she's texted the doctor. If she calls me "Punkin'" one more time I'm fixin' to bust my Redwing off in her "how-do-you-do."

Mrs P and I chat about how cancer treatment is about how you deal with setbacks. I am dealing poorly with them at the moment.

Grace pokes her head back in to tell me that the doc called and talked to somebody else, that's why it's taken so long to get word to me that we're going to reduce my dose by 20% and go ahead with treatment. She'll be right back to start my fluids, Punkin'. I mind her much less than I did a few moments ago.

I learn that Ben Franklin had a terrible rift with his son (William?) who was the Royal Governor of New Jersey. Ben's boy was a faithful Tory. I wonder how I got to be nearly fifty years old and a fairly well educated man, without ever having heard this story before.

Grace returns (getting a theme here?) and pokes me painlessly in the back of my hand. I am in love with her. Then the vein blows out and she has to stick me again in my forearm. Another good stick, but I now have three bandages on my arms and the morning's just getting started. She apologizes for the extra needle hole. I tell her, "Honey, I have cancer. I don't give a damn about a couple of needle pricks." She laughs, "You call me if you need anything, Punkin'." I really am tired of being called that by a stranger.

I learn that the battle of Bunker Hill didn't happen on Bunker Hill, but on the hill next door whose name I failed to write down. Also that Ethan Alen and Benedict Arnold were bitter rivals because Arnold was a consummate professional and Alen was a hillbilly knucklehead from Vermont whose Green Mountain Boys would only take orders from him. Alen also took full credit for the taking of Fort Ticonderoga which he should rightly have shared with Arnold. What any of this has to do with furniture or eggs, I did not learn.

I looked out the window for a while. I saw a couple of blue jays playing in the cedars. A ridiculously large dragon fly hovered outside for a while, then scooted away, presumably to find a body of water. I watched what appeared to be a hawk circling over the asphalt roof of the building across the street. The guard at the gate escorted a shapely brunette across the parking lot exhibiting what seemed to me to be much more than just professional interest.

The man next door peed himself. This is pretty easy to do because they are pumping you full of fluids to protect your kidneys and if you don't answer nature's first call, you are likely to learn that there's no snooze button on your bladder. Grace found him a pair of dry paper pants but did not to my recollection, refer to him as a member of the gourd family.

George Washington was compelled to put an end to the recruitment of Free African-Americans into the Continental Army because the south didn't want a bunch of gun-toting Negros roaming the Carolina hills, no matter what color their uniforms were. In response, the Red Coats announced that all slaves who enlisted in the British army would be freed at once. How did I never hear all this stuff?

Grace dropped of my bag of toxic, bio-hazard, poisonous chemo brew about half an hour early. She told us an uninteresting story about being under staffed, and wandered off, leaving this deadly packet on my rolling tray. I made a mental note that I hadn't peed yet, and resolved to be extra vigilant.

My chemo bag is orange, like a punkin'.

Some English General led an army of white men dressed in red through Brooklyn during the battle for New York. I would not suggest any general try such a route today.

Grace returned in her haz-mat regalia and we did the old what's your name, what does his armband say, what does the bag say, what does the chart say confirmation cross-check drill. Everything checked out, so she hooked me up and Mrs P went off to let the dog out and grab some lunch.

Oh first Mrs P gave me what she has begun referring to as "a feeding." This involves sucking a protein shake up into a large syringe and squirting it into my PEG tube. We do this three or four times a day, providing me with about 2500 calories, give or take. I'm gonna be a little under today.

Soon as my wife left, I had to pee. Grace saw me wheeling my IV pole across the corridor and asked if I needed any help. I was at a loss, so she turned on the light for me. I didn't want to make her feel bad, but the rest of the job was basically plumbing which is almost always men's work in my family.

No, that isn't right either. The toilet has been getting quite a workout this summer, and Mrs P has replaced all sorts of floats and flappers and things with no male assistance whatsoever. Still, she has never had to assist me in actually using the toilet.

"Chemotherapy patients: please remember to flush twice after using." Nothing about employees washing their hands, though. Hmmm...

Exhausted with learning what seems to be very rudimentary information about my own country's history, I switch to a futbol match on the pitch between sides representing Paraguay and Espanya. I know that's wrong, but I am too tired to figure out how to do the tilde thing over the N. I am please to say that I learn nothing more about the American Revolution.

Many handsome, dark haired men live in Paraguay and Espanya. The Paraguaymians are short, barrel-chested Andean mountain men who are utterly tireless. They wear red and white striped uniforms that make them look a little clownish. The Espaniards are tall and graceful in their dark blue uniforms. The Paraguayians appeared to be quite over matched against the tournament favorites, but also appeared to be unaware of this fact and were running around like maniacs, kicking big tall Espanish asses until the last minutes when two Espaniards had point-blank shots on goal. The first hit the left post and bounced out. The second hit the right post, then the left post, then bounced into the net. The Espaniardish striker ran to the corner and did a belly flop, then a bunch of other Espaniardians slid after him and began rolling on top of him giving him kisses. The Espanish side emerged victorious by the score of one-nil. It was a profoundly unsatisfying hour-and-a half. This by the way, is the most popular sport on earth.

During the game, Mrs P came back, gave me another "feeding," and Punkin' girl returned to start the last bags of saline when my chemo was finished. "Are they still playing these games?" she wondered. For once, I felt like we were on the exact same page.

Another trip to what Grace insisted on calling "the potty," and I was just about finished. Mrs P and I watched the little clock counter run down to 00:00 and it started beeping. We had been here for eight hours. My backwoods nightingale was on me in seconds. She removed the tape from my arm where the needle was being held in place.

OK, God forbid you should ever get Chemo but if you do, SHAVE YOUR ARMS! Because of the toxic nature of the chemicals, they really don't want them leaking all over the place so they cover the needle with a two-by-two-inch patch of clear tape that would keep tiles from flying off the space shuttle. Grace removed this tape as compassionately as she could. To her, this meant grimacing and saying "I'm so sorry, Punkin'," as she peeled away layers of my epidermis a millimeter at a time.

We finally left the building, drove home, carefully avoiding the Independence Day festivities. I no longer felt worthy to celebrate the day anyway. Heck, I didn't ever know that Washington was broke until he married Martha Custis. Apparently, she loved a man in uniform.

So now, I'm home. Tired, but not sleepy. We are fighting the impulse to shut the windows and turn on the AC, but the battle is not likely to last much longer.

Might as well try to march a bunch of guys from Oxford down Bedford Avenue.

Peace,
pennsy
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