#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

#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

#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

#207: Not an Easy Morning

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

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

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

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

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

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

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

Peace,
pennsy

#206: Change in the Treatment Plan

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

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

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

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

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

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

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

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

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

I knew him, Horatio.

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

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

Peace,

Pennsy

#180: Mileposts Passed

Today was "R5" on Mum's calender. That's day 5 of 33 radiation treatments. She is the keeper of the official date book. Actually, I think we all have one. It's funny how one measures out the time. My day usually starts around dawn with some quiet staring into space, then an alarm at 7:00. Wash, rinse my mouth, pills, flush the PEG, change the dressing. It's a team effort. After a quick trip across town courtesy of Mom or Mrs P I'm on the radiation table by 8:30 and out the door by 9:00. Then I sit down to chat with you for a while.

Of course meals are mileposts, too. Slowly sipping some herbal tea or a protein shake. A nice crumbly muffin. A smoothie made of fresh bananas and frozen berries. Yesterday, I dreamed about cutting a slice of Ray's Original Pizza into tiny little pieces and savoring each sliver.That may have to wait for the store-bought choppers, though.

And friends, my touchstones. I spent hours on the phone yesterday. You can't imagine how I treasure each second. We talk about plays they are working on. Books they are reading. Sick relatives. Gossip and jokes. My friends give me a reason to laugh every day. They are my treasures.

Late in the afternoon, my energy wanes. The tum becomes a little unstable. The thinking clouds. There isn't much evening activity for me these days, though I desperately want to be well enough to see some of the wonderful theatre being prepared for the summer. Maybe if I time the steroids out just right...

Tomorrow, I get to sleep in. No radiation on the weekends. It seems funny to get such intense treatment on a work-week schedule. The techs told me today that each shot from the linear accelerator (that's the machine's real name) represents about 6 million volts of X-ray radiation. My morning treatment is comparable to getting 100 chest X-rays every day. I'm not sure which is more miraculous, the fact that they can do it, or the fact that I can stand it.

Summer is only 10 days away, but feels like it will be here any minute. This morning the air was just plain sultry. There aren't many days that I happily surrender to the Air Conditioner gods, but today, my heart belongs to them. At least until the afternoon rain gives us some relief.

I hope your time is passing peacefully today. May we all have many miles to travel.

#178: A Good Day to be Alive

I experienced my first chemo side-effect yesterday and it was a heart-breaker. Mrs P made herself a grilled cheese sandwich. As I made my way toward the kitchen, the cooking odor from that most comfortable of foods hit me like a cloud of poisoned gas. A wave of nausea knocked me a step backwards and I felt as if I might faint. Over a grilled cheese sandwich! If she had made tomato soup with it I may have been struck dead on the spot.

Consequently, I have forbidden Mum to make pierogi. Should I ever feel nausea at the smell of that classic Hunkie delight, I would lose the will to live.

Today was Mum's turn to take me in for treatment. Mrs P got to sleep in. They have decided to switch off like that. Don't want to burn out the girls in my inner circle. I took care of flushing and cleaning the PEG tube myself, and Mum helped me to coordinate the nine different drugs that start my day. I can't imagine what it would be like to go through this without the two of them. No one should ever have to do this alone.

I was warned about 'roid rage, and I know it's still early, but all I've noticed is that the steroids give me a lot of energy in the morning, then I sort of crash around 3:00 in the afternoon. Today, I took advantage of that in a couple of ways. Mum let me drive to the clinic, which I enjoyed. Then I stayed awake and alert to pay more attention to the machine as it shot me with its mystery rays. The tech explained how enormous lead plates in the gun combine with fine, sliding fingers to shape the beam. By varying the intensity, they can control how deep the particles sink into me. It is amazing to experience, though there is no sensation I can detect. They gave me a brief tour of the "cockpit" where the techs control the whole works from a safe, lead insulated distance. I was amused to see that the whole thing is run by a gang of five Dell computers daisy chained together. Not a Mac in sight. No wonder they crashed so easily yesterday.

Finally, I felt so good when we got home that I decided to take a walk. It was a tiny trip, just once around the short block across from our house, but it felt good to travel familiar sidewalks in the cool morning air. Having a hose running through my abs limits the kind of resistance work I can do, and it queers my posture a bit, but I can certainly walk. I felt no ill effects from the trip, and plan to keep moving as long as I can.

And to top it all off, I was able to eat one of Mrs P's home made bran muffins today with no ill effects.

It's a good day to be alive.

#177: Radiation Therapy Begins

OK, first I have to tell you about "waffle face." This is not something that I read about anywhere, and I found it hilarious. Remember I told you about the mask, right? Here's a  good picture from Upton's Cancer Update.

They put a block under your head, then place the mask over your face and shoulders. Once it is bolted to the table, you don't move. This allows them to target the radioactive hoodoo very precisely. Yesterday, I slept through the procedure. They shot some "films" which I guess means they did X-rays or something, then they shot me with radiation. When I woke up, they removed the mask, and sent me rolling down the hall with my IV pole. I asked to use the bathroom, and when I looked in the mirror, I saw that I had what looked like a very mild sunburn in the diamond pattern of the mask. Mrs P said they looked like snake scales. They eventually faded, but they tickled me. We'll try to get some photos of me as "Lizard Man:" later on.

I was more awake for today's treatment. I'll be starting my weekdays at 8:30 for the next 6 1/2 weeks when I have a standing appointment with the radiation techs. On Mondays, I'll meet with Dr K. He's the genius who masterminds all the cosmic rays.

Here's how the day goes. You check in at the guard house where a sleepy man looks up your name on his monitor, then lets you into the parking lot at the Markey Cancer Center. Upon entering the lobby, you're greeted by a charming lady at the reception desk and a creepy baby grand piano that plays by itself. Even the keys move. Down the elevator to the G level, where you scan your ID card at the desk. This lets the radiation techs know you have arrived. Soon, one of them appears and calls your name. You are led down a long hallway to a room with an enormous door. The thing must be at least 10 inches thick, and swings on two, half inch thick steel hinges. Inside is the "machine."

It looks like a robot, which I guess it is. There is a smooth steel table with a linen "draw sheet" on top. They use this sheet to slide you into place once you are on the table. Your head goes onto a hard plastic rest, your knees go over a soft, prism shaped cushion. Then the mask is put in place.

The mask is soft, but firm. You can breathe easily, open and close your eyes, even talk if you don't wag your chin too much. Once the bolts are clipped into place, the team starts preliminary targeting checks. There are lasers all over the place. They shoot dots and cross-hairs that the techs use to match the landmarks that they've put on tape on the mask. Once everything is in place, they leave the room and the table starts to move. It lifts you up into position, and the robot swings forward. Sometimes there are arms that reach around from the sides. Sometimes the big disk hums and beeps. The entire assembly moves with easy autonomic grace. Well, most of the time it does.

The whole gizmo came to a stop and the gentleman tech came back into the room, I assumed to release me and send me home.

"We done?"

"Nope, the machine's broke down."

Broke down? Oh no. Tell me my fat ass didn't break the table. No, it turned out there had been some kind of software glitch and the whole gizmo locked up. Sort of the high tech version of the Blue Screen of Death. Since there is apparently no "Any" key on a zillion dollar ray gun, they shut the thing down and decided to move me to the neighboring room to finish my treatment. I swung my legs up without waiting for help, and he jumped toward me.

"Wait, wait, wait!" From under the mask, I hadn't realized how far the table moved. I was a good five feet off the ground. He brought me a stool, and I hopped down like a gazelle. After a quick trip to finish up next door, I was done for the day.

Mrs P looked tired when I came out. The last two days have taken a lot out of her. She drove me home and laid down for a well-deserved nap. I'll just keep going until the steroids crash. I figure I'm good for about another hour.

#176: The First Day of Chemo

This post is much longer than I expected. Sorry, it was a pretty eventful day. I'll talk chemo today and radiation tomorrow - Pennsy

Last night was a late one. There was a blog to post, my news reader to catch up on, a couple days worth of Facebook status updates to read. Yeah, I was stalling. Finally got to bed about 1:00. Mum was still awake, reading. I don't think either of us wanted to face the dreams that our evening was likely  to hold. We were both awake again at about 3:30. Mrs. P's alarm went off at 6:00. I got up and made a vanilla protein shake. That's what goes in the spot where I put three Marlboros and half a pot of coffee back in the old days.

Then it was time to flush my PEG tube. This involves taking a large syringe and running clean water through the tube four or five times a day just to keep it clear. We also change the dressing around it then. Because the stoma is still pretty new, it leaks a little. Usually nothing newsworthy. Except this morning on the gauze we found something that looked suspiciously like the spinach and mushroom dish I enjoyed at our favorite Indian restaurant yesterday.

We were faced with two equally fearful prospects. First, there was a possibility that stomach contents were leaking. This is very bad mojo. The juice in your stomach is designed to break down organic tissue. Having it sloshing around inside your abdomen is a terrible plan. Second, it was certain that I was going to have to admit that I spent my last day before chemo - a therapy almost assured to cause nausea - gumming on enough curry and tandoori to bust a gut. Mrs P, ever the student of those forensic procedural shows, bagged and tagged the evidence so we could take it with us to the cancer center.

There is such comfort in falling into a routine someone else knows well. After a short wait, we moved from sign-in to triage, from triage to the treatment room. "Dee", the nurse from my medical oncologist's office was summoned to examine the verdant discharge on my bandages. After a thorough examination of the tube site, the team agreed that the green stuff was gross, a little hilarious, and harmless. The Chemo could proceed.

"Rodger", the chemo nurse explained the procedure to me. He would give me two litres of fluid, then a bag of medicine, then two more litres of fluid. The "medicine" is very dangerous to the kidneys, so they do all they can to keep them flushed clean. I should feel free to get up and use the bathroom at the first urge. We would be working my radiation treatment into the schedule sometime during one of the two hydration periods.

Two children in white lab coats were my next visitors. I was shocked the first time I saw a police officer on a subway car who was clearly much younger than I. I have started to feel the same way about a lot of the wonderful young people who are working to save me. They are  brilliant and competent, but they are also so fresh-faced that they make me want to ask for ID before I show them my scar.

He was my pharmacist. She was his student and not his prom date, as I had assumed. He told me about the specific medicines i was going to be using. My kidneys could fail. My hearing could be damaged. My esophagus might swell shut. My bowels could stop moving. Gotta love this kid. While Mum and Mrs P took careful notes, (God bless them,) he went over each of the pills I'd be taking home. Steroids, anti-nausea potions, more anti-nausea potions, even more anti-nausea potions. "Don't lose these," he cautioned after showing us one particularly potent pellet, "they cost about two thousand dollars a piece." So that's where the nausea comes from.

The girls worked crossword puzzles and did needlework while I listened to my iPod and gazed out the window of our little cubicle. Time dripped through the pump that fed the juice into my left wrist. I had to move my LiveStrong bracelet to my right arm. In the process, it got turned around so the lettering faced away from me. I reversed it again so I could read it. The words are for me, not to impress other people.

When it was time, after about two hours, Rodger and another nurse came in with a large IV bag in a dark amber shroud, almost the color of a beer bottle. I should be so lucky. They were wearing blue haz-mat robes and gloves to protect their skin from the stuff that would soon be pumping into my veins. Like missile officers reviewing launch codes they triple-checked my identity.

"What is your name and birthdate?"
"My records show him as ... born on..."
"His wrist band shows him as so and so, birthdate thus and such, patient number..."
"I have him as patient number..."
"The bag contains..."
"My records show that the bag should contain..."
Check, check, and check.

There were a lot of light-hearted moments in the room. This was not one of them. this was some nasty stuff. How nasty is it? My pee is toxic. I had to use a special bathroom on the ward. The staff could not be exposed to the chemicals they were giving me or they might experience all the wicked side effects they'd been telling me about for two months. I have to "double-flush" to make sure none of the stuff they are putting on me winds up in the bowl at home when someone else uses it. Disinfect seat and handle. Nasty stuff.

As the chemo was finishing, a dear friend who is on the staff came down to visit with us for a while. She offered to walk us over to the radiation therapy building once I was back on fluids again. Rodger set me up, and we trundled my little IV pole across the courtyard. It was a beautiful Bluegrass afternoon. We laughed and joked and drank in the air and the energy of the young people enjoying their lunches at picnic tables. We probably walked 150 yards. It felt like a mile.

After radiation, which I mostly slept through, we made our way back to the ward. It wasn't long before I was finished and feeling worn out. We arrived at 8:00 in the morning and left around 3:00. That's all the typing I can stand today. Sorry I can't craft a more artful ending. We'll talk about radiation tomorrow.

Peace,
pennsy

#171: Cancer Geek

Yes it's very sad to have Cancer and life is unfair and blah, blah, blah... but some of the tech gadgets are so cool!

ENDOSCOPE


This tiny camera is mounted on the end of what looks like a plumber's snake. The doc gives you a mild topical anesthetic,sort of like Clorasceptic. Then they lube up the snake and poke it up your nose, make a quick left turn at the fork in the road, and zoom, you're looking at your throat from the inside. This video isn't of my vocal folds, but it looks just like mine did. Since I was a choirboy back in Dormont my voice has been a defining part of me. Actually seeing it work was a real highlight.

PEG FEEDING TUBE

This is just awsome. When they first described the procedure to me, I thought they were joking.


Isn't that amazing? Now what they don't tell you is that this hurts like hell. Imagine what it would feel like to have someone shove a pencil through your belly from the inside. Drugs take the edge off the pain, but only just. If I need it later, I'll attach a bag of formula to the tube and let gravity pull my supper in. Meanwhile I have to flush clear water through the tube every five hours to make sure the plumbing stays clear.

THERMOPLASTIC MASK

This is the procedure that I had done today. What amazes me is that somebody even thought this up.


Once they had molded the mask over my head and shoulders, they ran me through the CT scan. These will be the baseline images that they use when targeting my radiation. They'll also be able to watch and measure changes inside my body as the treatment continues. You might think it's pretty spooky to have your head bolted to a table, but actually I was pretty relaxed. I could easily have fallen asleep, but the platform is kind of narrow and I was afraid I'd roll off.

There are all kinds of miracles happening to us every day as we travel this road together. Love comes out of nowhere. Generosity and kindness take us by surprise every day. All in all there is much more laughter than weeping going on in our house. Technology is not always as heartwarming as a phone call from a friend, but it can be just as miraculous. I am continually amazed by the skills and creativity of the healers who are working so hard to save my life.

#170: Setbacks and Delays

I can't help smiling when I remember that night in the recovery room when I thought that Cancer had been awfully easy to lick. I half-expected them to pat me on the head and send me back to work. No such luck.

Just because the surgeons removed all that they could see doesn't mean that they got it all. There were cells outside of the main tumor, and it had reached the lymph nodes in my neck. I was going to need both radiation and chemotherapy to clean up what they might have missed.

The meeting with the radiotherapy oncologist was pretty jarring. She described the procedure to me, and told me about the side effects I should expect. Loss of taste. Sunburn like burns on my neck. Hair loss. Sores in my throat and mouth. Nausea. Lots of pain. For at least six to eight weeks. We scheduled my first appointment with the medical oncologist (the chemo doctor) and left the clinic on shaky knees.

The morning I was to meet the chemo doc for the first time, I got an urgent call from the Cancer center. Blue Cross had determined that my Cancer was a "pre-existing condition." My insurance would not be paying for any radiation or chemo. The lady at Lexington Clinic was very kind and assured me that they would find alternatives for me. Mrs P was working, but Mum was there in the room when I hung up the phone. She wept for my suffering. I wept for my humiliation. After a lifetime of hard work and playing "by the rules" I was being pawned off as a charity case. I blamed the insurance company. I blamed the man who fired me two years ago, costing me my life's savings and my comprehensive medical coverage. I blamed myself for trying to make a career in the arts where poverty was practically guaranteed. And I blamed God in whose image I had been made, reputedly.

Late that afternoon, the Clinic called to let me know that the University of Kentucky's Markey Cancer Center would accept me as a patient. They would be able to help me with the financial aid I needed. Actually, what she said was that they were big enough to absorb the loss of treating me. They had made an appointment for me. My treatment would be set back a week.

At the Markey Center I met Dr. K. He and his team examined me much more thoroughly than they had at the Clinic. They discovered a loose tooth. We would need to see a dentist about that. He also explained to me that because of the damage the therapy would do to my throat, there was a good chance I wouldn't be able to swallow for most of the time I was getting radiation. If that happened, I would need a feeding tube. Rather than interrupt my therapy to put one in, Dr. K recommended that we install the tube before my first treatment. Now I had a dentist appointment and an outpatient surgery to complete before radiation could begin. I still hadn't met a chemo doc.

As we looked at the x-rays together, the dentist was very kind and to the point. I had advanced periodontal disease, a chronic infection of the tissue connecting my teeth to my head. Radiation would destroy my saliva glands and compromise my immune system. The infection in my gums would spread to my teeth, even my bones. I could wind up losing my lower jaw. All of which would interrupt my therapy and give the Cancer a chance to gain a new foothold.

My teeth were shot. They all had to come out. The next day, if possible.

Another office. Another kind administrator explaining that payment would be expected at the time of treatment. Yes she understood that I would die without the procedure. Yes, she was very sorry. If we could pay half up-front, they would bill us for the rest. Mrs P scrambled to find friends and relatives who would lend us the money for the down payment. The next day, all my teeth were gone. And my treatment had been delayed another two weeks while my mouth healed.

I finally got to meet Dr. Arnold, the medical oncologist. She asked why I had waited so long after my surgery to start chemo. I tried to tell her the story without cursing. She and her team examined me. I had developed "Thrush," a fungal infection on my tongue. Mrs P said it was from all the antibiotics I had been taking. They would need to get that under control before starting chemo. We also needed to schedule a morning to have my feeding tube put in. I expected this to take about five hours. I'm not sure why.

Two mornings ago, I reported to the hospital. They sedated me before I knew what was happening. I woke up feeling as if I had been shot in the belly. In theory, the idea of installing a hose through your skin and directly into your stomach is incredibly cool. I even found videos of the procedure on YouTube. In practice, having someone poke a hole through the muscles of your abdomen really, really hurts. You know all those exercises in the gym that are designed to develop your core? They're there because you use the muscles around your middle for almost everything you do from getting out of a chair, to drawing a breath, to using the bathroom. The surgeon poked a hole in my core, and left about 14 inches of rubber hose hanging out of it. Ouch. I spent the night in the hospital, eating Percocets like M&M's.

Today, I got the call from my medical oncologist, Dr Arnold. We're going to have to delay my treatment while I recover from this "minor" procedure. Chemo and radiation were scheduled to start tomorrow, now they will not begin until June 7. Ideally, radiation should start within four weeks of surgery. My operation was six weeks ago.

I'm really scared tonight. I'm afraid of what is happening inside my throat while we figure out which specialist gets the next crack at me, and who's going to pay for it. I'm afraid that the pain I'm feeling now is nothing compared to what I'll be feeling once therapy starts going full bore. I'm afraid that the steady hold I have kept on my emotional health so far could slip at any time turning me into an angry SOB lashing out at the people who love me so much. I'm afraid God has forgotten me and my family. I'm afraid that, as bad as it's been, we "ain't seen nothing yet."

I wish I had a glib little spiritual bonbon to throw in here. Some soothing bumper-sticker theological insight that would make us all feel better. But the truth is, I haven't got a thing. Tonight, I'm just scared. And that's going to have to be enough for me. There aren't any easy answers to be found. So I'll just have to sleep on the hard questions for a little while longer.