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.
"He not busy being born is busy dying." ~ Bob Dylan
Saturday, May 22, 2010
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.
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.
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.
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.
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
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
Friday, January 1, 2010
#162 Not Another "I Hated '09" Post
So '09 sucked for you. Grow up. The year was hard in Pennsyltucky too. Some life lessons come hard.
Don't sell your love to the highest bidder.
People say "I love you." as easily as they say "Pass the salt." Don't believe in Easy Love. Just because someone cares about the things you can do for them, that doesn't mean they care about you. They'll stop caring as soon as they stop profiting.
The other shoe always drops.
When you see the headlight at the other end of the tunnel, for God's sake, get off the tracks.
Genuine loyalty is given, not earned.
There are people out there who will stick with you through thick and thin - but they may not be the ones you expected.
Blood really is thicker than water.
When times are the hardest - when worse actally does come to worst - you find out that your family cares the most.
A drowning sage does not second guess the lifeboat.
It ain't the boat that got you here, and it ain't the boat you would choose, but sometimes you just have to climb in and start rowing.
Never argue with someone who buys their own bullshit.
There is nothing in the world as powerful as self-deception. You think you're helping them to see things as they are. You're not. Let life teach them what they need to know.
You do as you feel, but you feel as you think.
Actions are reflexive responses to emotion. Emotions are logical responses to thoughts. If I think you are dangerous, I'll be afraid. If I think you are fascinating, I'll be curious. If I think I'm a loser, I'll despair. If I think I'm a student, I'll move on to my next lesson.
You have no idea how much people care for you.
There are people willing to help, to stand beside you. To be there. There are people who think better of you than you think of yourself. Whether you are at your lowest or at your best, there are people who suffer and rejoice right along side you. No matter what. Love these people with all your heart. They are your friends.
Wishing you peace and prosperity in 2010...
Pennsy
Don't sell your love to the highest bidder.
People say "I love you." as easily as they say "Pass the salt." Don't believe in Easy Love. Just because someone cares about the things you can do for them, that doesn't mean they care about you. They'll stop caring as soon as they stop profiting.
The other shoe always drops.
When you see the headlight at the other end of the tunnel, for God's sake, get off the tracks.
Genuine loyalty is given, not earned.
There are people out there who will stick with you through thick and thin - but they may not be the ones you expected.
Blood really is thicker than water.
When times are the hardest - when worse actally does come to worst - you find out that your family cares the most.
A drowning sage does not second guess the lifeboat.
It ain't the boat that got you here, and it ain't the boat you would choose, but sometimes you just have to climb in and start rowing.
Never argue with someone who buys their own bullshit.
There is nothing in the world as powerful as self-deception. You think you're helping them to see things as they are. You're not. Let life teach them what they need to know.
You do as you feel, but you feel as you think.
Actions are reflexive responses to emotion. Emotions are logical responses to thoughts. If I think you are dangerous, I'll be afraid. If I think you are fascinating, I'll be curious. If I think I'm a loser, I'll despair. If I think I'm a student, I'll move on to my next lesson.
You have no idea how much people care for you.
There are people willing to help, to stand beside you. To be there. There are people who think better of you than you think of yourself. Whether you are at your lowest or at your best, there are people who suffer and rejoice right along side you. No matter what. Love these people with all your heart. They are your friends.
Wishing you peace and prosperity in 2010...
Pennsy
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