The Long Road... #2014reboot

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Thursday, August 26, 2010

#254: Change Around the Corner

Three quarters of a mile today, at a much better pace. Jake would have preferred more time to sniff and pee, but I had my own agenda. Besides, people frown on me sniffing and peeing in their yards.

It was a fantastic day, moderate temps and almost no humidity by Bluegrass standards so we were able to clip right along. Somewhere along the walk, I realized that I need to find my watch. I gave both my watch and my car keys to Mrs P back in April when I went in for surgery and haven't seen much of either since then. I do remember that the battery is dead on the watch, though. It will be nice to care about time again.

Mum went to KFC and brought me back some mashed potatoes and gravy tonight. Things went pretty well until I ran out of gravy, then it was a little like eating wet sand. The taste was strange, but not unpleasant. I did enjoy some scrambled eggs for lunch, though. That's a new one to add to the menu. I can practically make a meal of the foods I can eat now, as long as I want grits, eggs, and mushroom soup. We may try some egg drop soup from the local carry out tomorrow.

I go back to the center for another blood test tomorrow. I'm starting to feel like a real athlete. The difference is, no substance is banned from my body. They shove all kinds of stuff in me. They keep adjusting the level of the blood thinners, trying to get the mix just right. I'm fine with that. Long as I keep getting better, I can handle a couple of needle sticks a week. When the nurse is both good and lucky, the bruising isn't too bad, either. At least I'm just taking Warfarin tablets instead of injections every day.

It feels like change is in the air. The beginning of the school year always feels that way to me. Something new is just around the corner. Can't wait to see what it is.

Peace,

Pennsy

Wednesday, August 25, 2010

#253: Back on the Road

Jake and I went for a walk today. We did a half-mile loop around a couple of blocks here in the neighborhood. I thought we kept up a pretty good pace, and I had no trouble breathing. It was nice to break a sweat from actually moving for a change. Most of my sweating this summer has been from near-death experiences. I think this is the longest I've walked since I got sick. I'm looking forward to stretching that distance to a mile. Might even be running before long.

The eating adventures continue. Last night I had an insane experience. I made myself a bowl of grits. That in in itself was a treat. While I wore the oxygen hose, I had to stay away from the stove to prevent setting my face on fire. Now that I can go out there, I can do a lot more experimenting and discovery. For example, and this is the insane part, last night I discovered that grits taste like fried chicken to me. This makes no sense. It's as if strawberry jello tasted like onion rings. I should be so lucky. Actually, that tastes pretty much like strawberry jello. But the grits thing really made me laugh. It got me wondering if it is my mouth or my brain that's playing tricks. Now if I could just find oatmeal that tastes like a nice piece of fillet.

The doc has me doing neck stretches. He is concerned that my surgery site will stiffen up if I don't start moving it around. It's hard to tell what it feels like since I have a big nerve missing in there and much of the right side of my neck is numb, but I can feel the limited range of motion. It's hard for me to tell if that's from stiffness, or if it's because of the muscle they took out of there. I know that my right arm is limited, especially when I try to lift it to the side. That may never come back, but I think I can strengthen the muscles around it. My friend C is a personal trainer and we're going to start working on getting me back in condition as soon as the doctors give me the OK. I'm looking forward to getting back to the gym.

In the meantime, a half-mile walk feels like a pretty good start.

Peace,

Pennsy

Tuesday, August 24, 2010

#252: One Less Tube

This one day at a time stuff is not as easy as it looks. I am so tired of waiting, so tired of little victories. So I was delighted yesterday when we passed a major milepost.

I went in to the center for some blood work. After it was done, I asked to see Dee, my oncology team leader. "When can I get rid of this air tank?" here's how the decision was made. First they put one of those big white clips on my finger and checked my oxygen saturation level while using the tank. It was around 99, whatever that means. Then they walked me briskly around the halls for a few minutes without the tank. We were watching to make sure that my oxygen level didn't go below 90. I finished my test at around 93. The doc said I could take off the hose, but that I should keep it around for a while in case I need it. Now it's gathering dust in the corner and I am very happy to be rid of it.

My friend J stopped by today. She is directing a staged reading that I'm going to be part of in the late fall. I'm hoping to have my teeth long before then and should have learned to speak again. It's a musical based on an old Rod Steiger movie called No Way to Treat a Lady. The role is juicy and the cast sounds fun. I've never worked with J before, so that will be a new adventure. A musical will be a lot for me to take on, but since its a reading, it won't be quite as demanding as a full blown production. Long as I don't have to
eat anything, I should be fine.


Speaking of eating, progress is still slow on that front. Last night I tried some chicken vegetable soup and it tasted like an ash tray to me. Also tried some chocolate pudding and it didn't taste like anything I've ever eaten before, least of all chocolate pudding. I think we have grits on the menu tonight, and I have high hopes.

I've been reading on my iPad. There are lots of free books you can download. Been digging into the Book of Mormon. I don't think I'll be converting anytime soon, but I enjoy learning about other people's faith traditions. Reading on the screen is much more comfortable than I expected. The type is bright and clear and the pad is very comfortable to hold. I think I'm finally getting the hang of this keyboard, too.

My next goal is to get my teeth. That is going to be pretty important if I ever hope to get rid of my other bit of plumbing, the PEG feeding tube in my belly. I cant help but think that the ability to chew is going to broaden my dining options considerably

But, you know what they keep telling me... "One day at a time." For now when I need encouragement, I'll just gaze at that unused oxygen tank in the corner. It really is the little things that get you through the day.

Peace

Pennsy

Friday, August 20, 2010

#251: Tethered

It would be a silly exaggeration to say I'm in prison, but I am definitely tethered. Ever since they found this blood clot, I have had a tube running from my nose to some source of oxygen. In the house it's a little machine called a condenser. Outside it's a rolling cart with a metal gas bottle that lasts about five hours. My little ball and chain.

I am growing to hate these two devices. I've always chafed at any external discipline, but being tied down for weeks on end is a whole new experience. 

I'm just not feeling very patient today. I want to be better now. Eating and breathing are pretty fundamental activities, and I don't seem able to do either without supplemental plumbing. I'd like to just stop wearing the air hose, but I'm a little scared to do that till the doc says it's ok. I had some cream of mushroom soup yesterday. That went well, so all the news isn't discouraging.

I had a visit from two friends yesterday. She is a cancer fighter with quite a few years of experience. We were talking about my upcoming scans and I realized that I am quite unprepared for bad news. I expect them to tell me that I'm all better. No evidence of disease. Back to the world I go. That's what I expect, but what if i'm wrong? What if they tell me I have to go back for more chemo and radiation? How will I deal with that? Even as I write the words, my brain refuses to take them seriously. Mrs P and Mum and I would all like our lives back, please. Please God, no more cancer.

Peace
Pennsy   

Wednesday, August 18, 2010

#250: Adventures in Fine Dining

Yogurt. Oh my. Yogurt was a big mistake. It tasted like lumpy vinegar. Every day I try something new. Our one success was with what I called "gruel" but what was actually cream of wheat thinned down with milk to an almost soupy consistency. That was the first flavor I could stand to have in my mouth all summer. It was, as one of my Facebook friends said, like manna.

Actually, it was weird. It didn't taste like cream of wheat at all, it just wasn't disgusting. Applesauce. Now that was disgusting. Anything sweet is just too much for me. It turns to chemicals in my mouth. I described it to Mrs P as the flavor of a rusty snow shovel, dirty, salty and metallic. Chicken soup was better, but too spicy. The herbs in it played havoc with my stomach which hasn't had anything more adventurous than fruit punch Gatorade in it for months. Plain broth may be better. The vegetables in the soup were fine, but the chicken was hard for me to break up and swallow. Also, the noodles kind of wore me out after a while.

Oatmeal was another failure. There are a million varieties, of course, but we tried Quick Oats and they were too course and sticky for me. They coated my throat and mouth and anything that stays in there long enough turns nasty. But nothing was as bad as the yogurt. I don't know how to describe it. Blueberry yogurt is one of my favorite foods, but this was just awful, so sour and the texture was unpalatable. I could barely choke down the first spoon full.

So we continue the great experiment. Right now I'm sitting down to a nice hot bowl of gruel. Tonight we're going to try mashed potatoes. It seems like the blander the better is the way to go. Can't be too sweet. Can't be too cold. Can't require chewing. But it has to be solid food. I have to wean myself off of this liquid diet in order to get rid of the PEG tube. It's a strangely unambitious sounding project, trying to discover something I can stand to eat, but it's mine.

The funny thing is, I'm accustomed to treating my body like a dumpster. If it fits, it goes in. I've been working on receipts for last year's taxes (where would we be without that extension?) and I'm horrified at what passed for my meals when I was on the road. What a vast collection of fatty, sugary junk. Suddenly I find myself completely rebuilding my diet starting from a foundation of hot cereal. Maybe I can be a little more thoughtful this time around.

On the other hand, I would sell my soul for a slice of pizza right now. So I don't want to commit to any radical resolutions.

Peace,
Pennsy

Monday, August 16, 2010

#249: Daring to Look Ahead

A new week full of possibilities. It has been a long time since I had the courage or the inclination to look ahead more than a few hours. Suddenly I have actual plans and anticipations! Feels like part of me is coming back to life.

We should learn this week if I've been approved for COBRA coverage from work. That will aid the great drug scramble. I hope to learn if our request to waive the pre-existing status on my cancer is approved. That will free up some money to cover part of my chemo. I continue hoping for the kindness of the strangers at Blue Cross. We're also talking with the folks at Medicaid to see if they can offer any help. 

Blood work today will well us how well the anticoagulant drugs are working. If I'm progressing on schedule, I'll be able to eliminate some shots and maybe even get rid of this oxygen tube in my nose. I thought I was all finished wih shots, but they put me back on the Arixtra last week.

I've started trying to eat by mouth. I have to be off the feeding tube for a couple of weeks before they will remove it. That part is hard. I can't stand the taste of anything. Applesauce, oatmeal, even chicken broth all taste more like solvent than food. I try a little each day, but it is discouraging so far.

One thing that is not discouraging is the continued kindness and generosity of friends and family. I would have thought that by now people would have been bored with me and my stories, but they continue to call, write, and visit. It means so much.

Met with a director on Saturday who wants me to be in a staged reading of a musical. It depends on when I get my teeth. Meantime, I have started working full steam ahead as if I were preparing the role for performance. It is such a great feeling to be busy doing work that I love. I just don't know when I'll have the wind again to be able to play. One thing I learned from reading Lance Armstrong's story was to never give up on a comeback. It maybe a while, there may be false starts, but I am determined to play again.

The best news is that for the first time in months, I have something to think about besides cancer. That in itself opens a world of possibilities I am eager to explore.

Peace,
Pennsy 

Wednesday, August 11, 2010

#248: Blessings to Count

Changes are happening. Good changes.

Now that I'm off the pain killers my sleep is much more normal. I'm actually awake during the day. This is a blessing because the days are so beautiful this week. Miserable to be outside in, but lovely to look at. Staying awake all day also helps me sleep at night. That's good because nighttime is when the worst anxieties come along.

My stomach has settled down. We're trying a day without the anti-nausea drugs. That torture has left me alone for a few days. So has the sore throat. Those are the two things I hate the most about being sick.

The depression has passed for a while. So long, old friend. See you next time. Life never looks better than during the days after a depressive bout. The most wonderful part of the disease is that it feels so good when it's over. Like hitting yourself with a hammer.

Still no food by mouth, but I am drinking more water to keep my swallowing muscles working. As soon as I can a stand the taste, I'll be guzzling those protein shakes like a madman. 

One funny side effect of losing my teeth... I have these crazy fingernails. I'm not sure quite what to do with them. I've always been a nervous biter. Now that they're growing, I have these grooming decisions to make. Trim them? Get a manicure? Let the m grow wild like Howard Hughes? All I know is that they make itching a much more rewarding experience.

While my nails are growing, my beard is showing no signs of returning and my hairline is still very high in back. I've stopped shaving my head though, and it's coming back nicely up top.

My improved condition means that Mrs P can get out of the house more. That is good for her mental health, which is good for both of us. I've a long list of blessings today. A good day to be Pennsy. 

Monday, August 9, 2010

#247: A Close Shave...

They installed the IVC filter in me today. Not as bad as I feared. They shaved my groin, (no photos, please) and shot me with lidocaine, then put a big needle in me and stuck the wire through. It snaked up through to a spot just past my renal vein and the doc popped the filter into place. The procedure was over in about ten minutes, and I got to watch on the fluoroscope (not unlike the one these handsome German engineers are posing around) while they did it. That's a live X-ray image machine. I watched my innards live on TV! It was pretty cool. Jake the nurse chatted with me during the procedure and it was over before I knew it.

Fluoroscopy image
c/o Northwestern Radiology
The time consuming parts were before and after. We arrived at 6:30AM for our 7:00 appointment. They drew blood. Then we waited till 10:00 for the lab to decide if my blood was OK to do the procedure. After it was over at around 10:15, they rolled me down to recovery where we waited until noon to make sure I didn't spring a leak. Easy as pie.

I've never been awake in the recovery room before. Usually I'm gorked out of my mind and judging from my reputation, I'm hysterically funny in that state. Today I was wide awake and was struck by the surreal nature of the conversations. To my right was a woman recovering from an angioplasty. Not too groggy there. Two or three stalls to my right, a woman kept saying, "Dad. Daddy. Are you ready to wake up?" It got to be eerie after a few minutes. Then they brought a young boy into the stall to my left. He had just come out of surgery and he was having full blown hallucinations -- terrors, actually. He was sure that his family had abandoned him and that he was surrounded by strangers who wanted to kill him. Complete panic mode. When his mother finally came in, he didn't recognize her and they both freaked out. It was a very disturbing scene. The good news is, the kid is not going to remember any of it. On the other hand, mom may be in therapy for years.

It occurs to me that a lot of people would have considered this a pretty eventful morning. Heck, getting your bikini line shaved by a guy named "Jake" should be memorable, all by itself. But to me, it felt like just another day at the office. Nobody died. Nobody discovered any life threatening mystery lumps inside me. All in all, an ordinary day.

Well, except for the shave. That's really going to itch in a couple of days. My sister says to keep the corn starch powder handy.

Peace,

Pennsy

Sunday, August 8, 2010

#246: George Bailey's Lament

I want my life back. That was my prayer yesterday. Alas, no angel to grant my wish, no bell ringing just yet.

If Saturday wasn't the worst day, it was certainly the worst so far. Started with retching and ended with tears. I don't know when I've wept so much and so hard. I am so tired of being sick. I want my life back. I don't want to puke any more. I don't want to eat through a tube or breathe through a hose. I want to be awake more than five hours a day. I want to chew something. Taste something. Walk a mile. Or ten. I want to go a day without needles and syringes. Give me my life back, Clarence.

It's a strange thing, crying. I went for years without doing it, certainly not without some great tragedy like the death of a family member. Now I weep at the drop of a hat. A kindness from a friend. A lovely movie. Or like yesterday, the frustration of not being in control of any damn thing in my life. I don't know what to do with these tears. Two things my father never taught me, how to fight with my wife and how to cry. I never remember him doing the first, and the only time I remember him crying was at my grandmother's funeral. He was a much more reserved man than I will ever be, and not much of a role model for how a 50-year-old man should behave when is so afraid of dying that all he can do is cry.

So I wept like a baby. I wept in my wife's arms and she sat bewildered and helpless with her arms around me. I wept as my mother stood by watching this grown man she had raised with tears and snot streaming down his swollen, toothless face. I guess I was feeling sorry for my self, but the tears had none of that guilty, self-indulgent feel that I usually associate with self-pity. Instead, I was grieving for the life I was afraid I was losing. Weeping for the hopes that might not come to pass. I have never felt death so near as I did yesterday, and I was scared of him. I don't want to go yet. I have too much to do. Too many roles to play. Too many trips to take with Mrs. P. Too many "Thank You's" and "I Love You's" to say.

Finally I prayed the prayer I've been afraid to say for all these weeks. "Oh, God. Please don't make me sick any more." Yes, I blame God for all this. I blame him for thinking up cancer in the first place. I blame him for every trip to the bathroom. Every breathless gasp. I try to forgive him. I want to make peace, but the truth is that I can't help feeling that my best friend has betrayed me. He's making me sick and I'm afraid he's going to let me die. I don't know what to do with these feelings. I'm not sure what I'd counsel someone who came to me with them. My dad would have said that I need to have more faith than that. I have to trust that God's plan is at work. I know he's right, but what's happening just feels so wrong.

Tears seem like the only possible response, at least they did yesterday. Today I feel a little more in control of myself. Isn't that what you're supposed to do? "Get a hold of yourself!" I'm calm today. Of course, I haven't been sick today, either. I have a script that I'm reading. Still learning my way around the iPad. Just finished Pride and Prejudice. I'm not without projects. I have things to occupy my time. But still...

I want my life back, Clarence. I want to live. I want to live...

Peace

Pennsy

Images from Hank's Eclectic Meanderings and The Dancing Image.



Friday, August 6, 2010

#245: Dinnertime for a Schmuck

It's been a rough couple of days. The daily trips to the hospital for shots are really taking it out of me, more than radiation did, as I remember. I don't know why this should be. There's more stress with all the insurance company BS going on. On the other hand, people have been so generous with help, it's hard to feel too sorry for myself on that front.

Mostly I'm just tired. I told Mrs P that I felt "flu-ish" today. You know that kind of tired just before you get the flu? That's sort of what I've got. I'm also coughing pretty violently. I think my throat is starting to slough off some of the stuff that's crusted on in there. That's good news, but not so much fun to go through.

Yesterday was our 21st Wedding Anniversary. Mrs P took me to the movies to see Dinner for Schmucks. We laughed our heads off. The picture is silly and fun, just what we needed this summer. I took my oxygen tank and she enjoyed some popcorn. It was a lovely night, even if I did wind up sick when we got home. I'm not sure if it was from the late hour or the exertion of laughing so hard for so long. In any case, I'm glad we went.

Mum just came in and told me that it's time for my supper. It feels a little like feeding time at the zoo. I need to go get nutrition pumped into me now. More news tomorrow.

Peace,
Pennsy

Wednesday, August 4, 2010

#244: Technological Wonders

A new technological wonder was introduced to me today. In the next few days, the docs are going to install an "IVC filter" into my veins. This gizmo is actually a little wire basket or umbrella that catches blood clots before they get to my lungs or heart. It seems to work a little like the fuel filter in your lawn mower.

Had a good meeting with the oncologist today. She is full of encouragement, a valuable commodity. The oxygen tank should be gone soon and so should the daily injections. My acting career is still a mouthful of teeth away, but I may be  chasing Mrs P around the house again in the next few weeks. That is even more enticing.

I had a bad day yesterday. Nausea, dizziness, I over did it. Mrs P and Mum and I went to a support group for head and neck cancer fighters and their families. I really haven't digested all that happened there because I started getting sick about halfway through. I think that my air tank ran out and I didn't realize it. That isn't something I have la lot of practice recognizing. We made it home before the sick began, but just barely made it.

Today was more quiet. Meals, meds, sleep. That's my routine, at least until my breathing is back in shape. Then I start training to resume life among the moving.

Peace,
Pennsy

Tuesday, August 3, 2010

#243: Not Dead Yet

I am overwhelmed by the response to my last blog. Loving friends calling to make sure I'm ok, not swinging from a rafter somewhere. My darlings, thank you. I'm ok. Depressed, but not desperate. My friend S and I had a good chat about it today. "You don't sound suicidal, you know. Maybe you should let people know that."

My depression has been merciful so far. I expected this battle a long time ago. I'm not sure what the trigger was this time. August has always been difficult for me. It's the end of the summer theatre season, or traditionally has been on my schedule. I usually get sick after a show closes, and playing in the park all those years, I usually got sick in August. It isn't rational, but then, that's why they call it pathology.

So given that tendency on my part, the insurance crap was enough of a trigger to send me into my present funk. S calls depression my old friend,and I guess he's right. We've been through a lot together, she and I. It's not so much the sadness that wipes you out, it's the hopelessness. The feeling that life is bad and can Only get worse. It makes you want to disappear. At it's worst, most logical end is the thought that everyone would be better off without you around. That's what depression does.

But there's something else that it always does. It always goes away if you can just find the courage and the help and the meds to help you ride it out. Depression's brig lie is that it will never get better. Fifty years of fighting it, with a couple nights with my back to the wall have taught me that ultimately, depression is a coward. It always backs away from a fair fight, even when fighting means laying low and riding out the storm. Bullies hate it when they can't get a rise out of you.  They want victims, not hunters. To tell the truth, I've been chasing a fatal illness long before cancer came to my house. I know depression's tricks. I know her habits and her weaknesses. She doesn't surprise me much anymore. But she did teach me something about being a cancer hunter.

Sometimes the best strategy is to wait your quarry out. 

So, cancer. I've lived through enough radiation to cook a small animal. Can you?

And depression, I've been a sinful failure more times than I can count in my life, and people still love me for reasons I can't explain. Who loves you?

My acting coach at OSU put it on a card congratulating me on my thesis: 

"He not busy being born is busy dying."

So yeah, I'd like to spend more time dreading the future and regretting the past, but I'm just too busy being born.

Peace
Pennsy   

Monday, August 2, 2010

#242: A Good Death

The subject wants some delicacy. We are comfortable talking about Christian life, but where are the tomes and pop psychology books instructing us about how die a Christian death? We've had a string of days in a row where my insurance companies are standing between me and the resources I need to live. When this happens, I find myself face to face with my real nemisis: depression, death's handmaiden.

Strangely, it is the human obstacles that give me the most trouble. Tumor? blood clot? bring them on. Surgery? deadly radiation? let's do this. But let some wall eyed weasel in a cheap suit get between me and my doctor and the fight just goes out of me. I turn into a giant beetle from a Kafka novel, rolling in my own mess, waiting for someone else to decide my fate.

So while it may be my destiny to die at the pencil point of some anonymous clerk with a police script in his hand, there can be no dignity in such a death. None of us wants to die at another person's choosing. I much prefer the heartwarming scene where my family is gathered around my sick bed. We say witty and loving things to one another, and then I gently expire as Mrs P holds my hand.

But even this romantic scene misses the real point. A good death is not measured by the moment you spend dying. Rather it is made by measuring the life lived before death's final call. If you would die a good death, live a good life once death starts visiting you. I hope with all my heart to be free of cancers and clots very soon, and I am living my life accordingly. I know it is possible things could work out differently. Let them. If these are my last few months on earth, I will not spend them being angry and resentful toward people I don't know

Death is the end of this chapter of our lives. That much we're sure of. I can't change that, but I can decide how to live the hours between now and then.

I will spend them loving, giving thanks, and working to build a better world that I may never see.

When death comes for me, let him find me there, not in a rocking chair cursing insurance companies through my toothless gums.

Peace
Pennsy         
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