Thursday, May 27, 2010

#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.

Wednesday, May 26, 2010

#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.

#169: Slow Fade

As I write today, I am heavily drugged. I had a feeding tube placed yesterday, and am really loaded up on pain killers. I'm kind of interested to see how this turns out.

As I remember the time around my surgery, I don't really have a linear narrative in my mind. More like a series of loosely connected episodes that fade in and out.

Arrive at the hospital, suitcase in hand. A very kind lady talks to us about how to get financial aid.

Ride the elevator to a large atrium/waiting area.

Follow a nurse through many, many doors after giving Mrs P my wedding ring.

Paper robe. Gurney.

Tim, our priest pops in to my pre-op cubicle. We don't really know one another very well, but I am very grateful for his company. He sits with me for a long time.

Doctors and nurses with clipboards ask me questions. They stick me with needles.

Groups of loved ones stick their heads through the curtain like farm hands welcoming Dorothy back from Oz. We laugh and pray. Mrs P is being brave.

I am in the operating room. There are lots of tables and instruments laid out along the walls. I remember thinking that these people are planning to be here for a while. I scoot off the gurney onto the operating table.

Mrs P is smiling at me. "You're finished." She tells me I was in surgery for six hours.

In a new room. Bigger. Dr Colin in scrubs. "Was it Cancer?" Yes, but they were able to get everything visible or palpable. He asks me to pucker my lips. The muscles around my mouth still work.

Holy cow! I am peeing through a catheter!

I am in Intensive Care. Big room. Glass doors. Just like Princeton Plainsboro. A nurse removes an IV line from an artery in my hand. It takes a long time to get the bleeding to stop.

I fall asleep with a cup of ice water resting on my chest and spill it on my lap. I am awake.

Two voices are discussing my incision. Dr. Colin does such beautiful work.

Am I in pain? Yes, very much. Morphine into the IV line, chased by a little anti-nausea medicine. POOF! Pain's gone.

A hazy, angelic presence enters the room, approaches the bed, and very gently pulls about fifteen feet of rubber hose out of my privates.

Dr Colin is standing above me. It is early in the morning.

I eat a hearty breakfast of Jello, Cream of Wheat, and Ensure. The phone rings, and it is Mum. Yes, it was Cancer. They got it all. It's going to be OK. My voice sounds good. She'll be here in two days.

Mrs P brings me a book and my Rosary. She looks very tired and very beautiful.

In order to confirm that my kidneys are functioning, I have to pee in a bottle and call a nurse to contemplate it. They are pumping IV fluids into me. I have to pee a lot.

I am sitting in the chair, reading a book. Is this really all there is to Cancer? A couple of days in the hospital? What's the big deal?

I am in a wheelchair moving from ICU to a regular room. The person moving me says, "Well, at least now you'll have a male nurse." I try to think of a single way in which this is an advantage.

Is it easier to ask a man to help you empty your urinal? No.

Mrs P brings me my phone. I call the family and a couple of friends. I kind of wish there were room for two on this bed.

Restless night as I take stock. Voice? Check. Tonsil? Hideous scar, hurts like the devil. Neck? Huge incision from my ear to the middle of my throat where it meets my chest. Numb from my jaw to my collarbone. I have no sensation in my right ear. I can hear with it, I just can't feel it. There is a little rubber bottle attached to a hose in my neck. Fluid drains out of the incision site into this bottle and someone empties it every few hours. I doze from time to time, but am awake more than asleep. Can't quite figure out where to put my head.

Dr Colin comes in before the sun is up. I'm going home today, as soon as the little drain is removed. I call and get Mrs P out of bed.

One last pee in the bottle.

Wheelchair ride. Into the car. Back to the house. Into my own bed.

No bed ever felt so good.

Saturday, May 22, 2010

#168: This is Happening to Us

The days between the PET scan and our next meeting with Dr. Colin were distracted. The nights were filled with unblinking stares at the blackness above our bed. Long fearful silences. "Denial" is as good a word as any.

Kammy was the first to notice at work. She is a young woman at work (nearly everyone is young at work) who pretends to be a silly girl to hide her intuitive compassion.

"You aren't as cheerful as usual today," she observed in that musical Congolese dialect of hers. "What's wrong?"

My candor took me by surprise. "I've been having some tests. The Doctor thinks I might have Cancer." It was the first time I'd said it out loud. Her response was honest and startling.

"I hope you don't. I don't want you to die."

And there it was, out in the air. Together, we had given my silent fear a voice. It was the first of many times I would realize how much I share my condition with the people who know and love me.

The day the Doctor gave us his opinion, Mrs P took it harder than I.

"I can't say for certain that it's Cancer, but if it walks like a duck... There is no time to lose with this. If you delay..."

I finished his thought, bad habit. "It will just keep growing."

The Doc corrected me sternly, "It will take your life." This was not a joke.

He described the surgery and the risks. Nerve Damage. Muscle removed. Loss of taste. Loss of hearing. We thanked him and moved across the hall to schedule the surgery, three days later. The treatment coordinator had strange news for us. My insurance was a strange, bare bones plan. Great for physician visits and prescriptions, but it did not cover inpatient procedures. Blue Cross would not be paying for my surgery.

It was a lot to take in. We rode the elevator down to the lobby and left. In the car, Mrs P started to cry. I was angry about the insurance. She was frightened about the diagnosis.

"I just don't understand why God is letting all this happen to you.."

I would deal with God later. "This isn't happening to me. This is happening to us."

What Kammy had taught me, what I wanted Mrs P to know was that I knew this was a burden we would share. I would not have the luxury of playing the victim. This was going to hurt everyone who cared about me, starting with her. We stopped by work. I picked up a prescription and told my supervisor that I probably had Cancer and would be missing a couple of weeks work after my surgery. I noticed his Livestrong bracelet.

"I may need to get myself one of these." I reached out and touched it, and he smiled sadly. I wondered why he wore one.

Mrs P and I walked out into the sunshine. It was a beautiful April Kentucky afternoon.

I wondered why God was letting this happen to my family.

Friday, May 21, 2010

#167: PET friendly

Getting a PET scan is an intense experience. The facility is in a separate building from the rest of the hospital. They use a lot of radioactive whachamacallits in there. I sat with a nurse and recited my medical history one more time. This is sort of the hospital version of "What's your major?" They have your history in the computer, but they ask you all the same questions over and over so they can get to know you. It's OK. I love talking about myself.

A lady in scrubs with a clipboard came into the room and told me it was time to go to the scanner. Mrs. P asked if she could come along, but they told her "No". Radiation.. Scrub Lady led me out the front door and around the building to a large trailer that was parked in the lot. We stepped onto a lift gate, like the one on a delivery truck, and were raised up to a rolling steel door. I was starting to feel like Maxwell Smart.

A second tech was inside. She answered our buzz by raising the door and letting us in. The door rumbled back down behind us. The place was lovely. Carefully designed lighting fixtures. Well crafted cabinets and molding. A small side room with a comfortable recliner for me to sit in.

While Scrub Lady put an IV in my arm, the second tech put on a face shield and gloves - sort of like Homer Simpson's opening credits outfit. She opened a small metal canister and removed a vial. I was relieved to see that it did not glow. Smiling, she injected the mystery isotope into my IV line and they shut me in my cubical. I noticed that the steel door was about three inches thick with a small heavy glass window.I could have been in any medical office in the world. Or a CIA interrogation room.

I had to wait for about half an hour in the silent glow of the MR-16 lamps hanging from the ceiling. I breathed slowly, trying to relax. When I closed my eyes, I could hear muffled conversation through the door. From my chair, I could see the door of the treatment room at the other end of the trailer. After a few minutes, both techs rose and went into that room. I saw a young woman coming out. She had a red bandanna on her head, and her face was gray and tired. She smiled and laughed for a moment with the attendants, then Scrub Lady pushed the button and the great steel door rolled up. The two of them left gingerly.

The second tech opened my door and said it was time. We walked through the windowless work area into the treatment room. A PET scan looks a lot like a CT scan. It's a big white donut with a table that slides you through the hole. I had to remove my watch, my metal ID necklace and belt, then my jeans (rivets, you know). She had me lie down on the table and covered me with a sheet. I found a comfortable position and she told me to lie still for the next twenty minutes. The donut started whirring and the table started sliding. I thought about the woman in the bandanna. Would that be me in a few weeks? How long had she been sick? Was she going to live? Her cheerful spirit was evident, but so was the toll that the disease had taken on her body. What the hell was going to happen if they found out that I have Cancer?

I closed my eyes and went to sleep.

When Scrub Lady led me back to the main building, I saw Mrs P in an earnest conversation with another woman in the lobby. I asked to use the rest room and they led me to a special toilet in the corner of the facility. You can't go just anywhere when your pee is radioactive. I turned out the lights to check, but it didn't glow either. When I was ready to leave, Mrs P hugged her new friend and they exchanged phone numbers. That's just the kind of woman she is.

"She was nice," I said, once we were outside.

"Her husband is terminal."

I took her hand, and we walked wordlessly back to the car.

Thursday, May 20, 2010

#166: Don't Tell Mama

What should we tell Mum? How much truth is too much? I made a quick decision. "We'll tell her the facts we know. We will not mention the word 'Cancer' until we know for sure."

Two qualities define my family more than any other. We are Worriers and we are Fixers. Problems at work or at church used to eat at my Dad, and he was always looking for ways to help make them better. Mum is the same way with her kids and my sisters and I inherited the Don Quixote gene from both of them. None of us seem to be able to leave bad enough alone.

So I knew that if we told Mum that I might have Cancer, two things would happen. First she would stop sleeping. Then she would haul her septuagenarian self out to the car and drive alone for the nine hours that it takes to get from her neck of the Pennsyltucky woods to mine. I didn't want her doing either of those things if all I had was a benign bulge.

We followed that strategy right up until my surgery. My first groggy question in the recovery room was, "Is it Cancer?" Up until then, every time we spoke I would tell Mum what the Doc had found and what they intended to do next. I could hear the fear in her voice, and I'm sure she could hear it in mine. We learned later that she thought we had known all along, but kept the truth from her. She called me in the ICU the morning after my surgery and I told her what they found. She was in Kentucky the next afternoon. I'm not sure how Mrs P and I could have made it through the days since then without her.

Mum has been with us for every doctor appointment since then. She was in the exam room for that horrible meeting when, Dr. K told us about what my radiation would be like. She was in the waiting room when I went in to the treatment room expecting to lose a loose tooth and came out with an appointment to have them all extracted. She was even sitting next to me the morning the hospital called to tell me that our insurance company had decided that my Cancer was a pre-existing condition and that they would not pay for my radiation and chemo.

She is stronger than I will ever be, and I spent three weeks "protecting" her from the truth. Maybe I wanted to be in control of at least a small part of my situation. Or maybe I was protecting both of us from having to face the possibility. "It isn't real if you don't say it out loud." What actually happened was that I gave her all that time to worry. Helplessly. I realize now how cruel my kindness had been. I gave her no opportunity to help, so all she could do was fear and pray. The people who love us deserve better than that.

So now Mum is in the Bluegrass for the duration. She can't cure Cancer, but she can puree a mean bowl of chicken chowder. Mrs P comes home to a clean house every day. I have company when I want it and a silent companion when I need one. And when the sun is shining, you can find us out on the porch reading, laughing, and playing with Jake the seventy-pound-puppy.

Don't tell Mama, but I'd be lost without her. On second thought, go on and tell her. Mum always knows anyway.

Wednesday, May 19, 2010

#165: In Which Pennsy Learns Something Might Be Wrong

Early in March, I trimmed my beard. It had gotten pretty shaggy, and Spring comes early to the Bluegrass. I had noticed a swelling in my neck, but figured it was just an inflamed lymph node caused by a cold or my lousy gums. They ache from time to time, but the pain always gets better eventually. Once my beard was cropped though, I looked in the mirror and was pretty surprised at just how big this swelling was. I was used to feeling them. I was not used to seeing them. Mrs. P confirmed that something was certainly out of order and we made an appointment to see the family doc.

I was expecting penicillin and the usual spiel about how I need to lose weight. Instead, Dr. Hall ordered a CT scan and a consultation with the Ear, Nose, and Throat surgeon. She also ordered a fine needle biopsy.

A few days later I had the scan before work, then waited a week to get in to see the ENT surgeon, Dr. Colin. His RN took a long medical history from us and read my vital signs. Pretty standard stuff. Dr. Colin came in and the room turned into a tech lover's paradise. First he looked in my ears, nose, and mouth using one of those little flashlights that they all have. Then he screwed this optical cable gizmo together and shoved a camera up my nose, through the sinuses, and down my throat. The weirdness of this sensation was far outweighed by the coolness of the experience of seeing my innards on a big color screen. He even showed me my vocal folds and let me see my voice-box working. We saw my pharynx, my tonsils, all the little parts I had studied in school as an actor and singer. It was awe inspiring. I expected him to withdraw the endoscope and show me where I had Mono or Strep Throat. Instead, he turned to the computer monitor and brought up the images from my CT scan.

As he scrolled through the pictures that represented my head and neck had I been shoved through a deli slicer, his cursor came to rest on a large bulging mass on the right side of my neck. It looked like a balloon with a rubber band wrapped around the middle. I had never seen a CT scan before, but Mrs P had. She spent a year working as a social worker with Hospice and had helped lots of patients through meetings like this. I heard her catch her breath. She was seeing something I didn't.

Dr. Colin showed me how the mass was not just a lump on my neck, but actually extended all the way in to my throat. My jugular vein and carotid arteries were being pinched in toward my spine and my windpipe was deflected severely to the left. He told me that it seemed to have originated in my Tonsil. We would need the PET scan to be more certain, but there was a real concern that this might be "cancerous." Mrs. P asked some questions I didn't understand, and we thanked the doctor for his time.

The ladies at the reception desk were very nice about setting up the PET scan and a follow-up visit. They also cancelled my biopsy. No time for needle pricks. We left with the distinct impression that time was becoming precious.

#164: Nixon Gave Me Cancer

Why did this happen?

After I had lived with the idea of having Cancer for a while, I started wondering where it came from. My cell phone? The cigarettes I smoked in my twenties? Flouridated water? The Illuminati?

The truth is, it doesn't make much difference. Explaining doesn't help me much. I'm in the "staying alive" business now.

Turns out that Squamous Cell Carcinoma in the mouth and throat are usually related to smoking, alcohol, dental irritation, and the HPV virus. I really didn't smoke very much or for very long, and I haven't had 10 drinks in the last two years. I do (or did) have severe periodontal disease which can cause systemic infections and heart disease, though I haven't seen anything connecting it to Cancer. I don't chew Skoal or betel nuts. I haven't been tested for HPV, but my "partner" for the last 25 years doesn't have it.

So we're not sure what caused my Cancer.

Until a better explanation comes along, as I do with all unexplained evil, I'm blaming Nixon.

Tuesday, May 18, 2010

#163 What we might be...

A few weeks ago (seems like a lifetime) I discovered a strange swelling on the right side of my neck. After a few tests we learned that it was Cancer and that it was pretty bad. There have been struggles and adventures that I intend to write about in the coming days, but I want to start with this.

Since I became ill, I have experienced mercy, compassion, and generosity in the most remarkable way. People have poured out their hearts, their hours, and their pocketbooks to Mrs P and me in a demonstration of gratuitous love that leaves me awestruck. It occurred to me last night that this is who me might be.

If we choose, we might be a people who share one another's burdens.

Who build one another up and encourage one another to succeed.

We might be a people who treasure and shelter one another from life's unfairness and cruelty.

Had we the will, we might be companions who make one another feel stronger, more capable, more known.

We might create places where our neighbors could bring their fears and find solace and comfort. Maybe not always understanding, but always acceptance.

The world might be such a place. Or the church. Or our heart.

We might be these things, but we prefer things as they are somehow.

We blame God for the fall of Babel, but the truth is that we choose babble. Consistantly. Tragically.

Cancer is teaching me what beautiful, holy people we might be... what a world we might share...

Peace,
pennsy
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