We had one of those conversations yesterday. The one where you call up an old friend and tell her you've got cancer. I always feel compelled to try and explain why I'm calling. "Just filling up the prayer chain." has become my standard answer. At one point she asked Mrs P how long I had been in treatment. We were stumped. She had to check the calender.
"My God. Only one week."
The treatments and I have so completely integrated into one another that it seems as if this is the way it has always been. I have finally achieved that contemplative ideal of dwelling in the moment. Here and now are all I have to go on and the time seems almost mystically filled. We laugh and pray. We weep and walk. I am amazed at how simple it is to live like this. Not the circumstances I would have chosen for an enlightenment experience, but we must take our blessings where we find them.
One of the consequences of all this "sitting around being" is that my nutrition has gotten pretty far out of whack. When they weighed me today, we found that I had lost 14 lbs since last Monday. That's a good month's hard work, but not a very promising start to seven weeks of physical punishment. I start guzzling Ensure shakes today. The young doctor suggested I start using my feeding tube. "You've got it. You might as well use it," but that rationale seemed a little slim to me. As long as I can still at least drink like a person, I'd prefer to do it that way. I can always sip down yogurt.
I've always been kind of a boring homebody, given my 'druthers. I'm grateful for that now. Someone who loved to be out running around might go nuts living like this. Now my days are consumed with writing, napping, and dreams. I dreamed last night that I forgave a friend. Someone who hurt me very deeply without meaning to. It's a conversation I would love to have in life, but the harm done was so unavoidable and so unintentional that it almost seems cruel to bring it up to him. Maybe I'll wait till I have progressed a little farther in my illness, then summon him here for a dramatic sickbed reconciliation scene. A fellow needs do live with a little bit of flair, even when living in the moment, don't you think?
Peace,
Pennsy
Monday, June 14, 2010
Sunday, June 13, 2010
#184: Serenity of a Sleepy Sunday
The morning was a difficult sequel to a difficult night. My routine was really thrown yesterday by missing my radiation treatment in the morning. The whole of Saturday seemed out of whack, and got worse as the minutes crawled by. Church this morning was a physical ordeal. Now, the world seems like a much more peaceful place.
All day yesterday I was pursued by these spasms of nausea. The the right side of the base of my tongue has really started to get sore, especially if I swallow or yawn. Most annoying of all, the ringing in my ears that the chemo nurse promised me has begun in earnest. Not painful, but definitely a nuisance. So "wah, wah, wah," I have plenty to cry about today.
This morning I woke feeling better, slept pretty well through the night, but Mrs P was exhausted from all her acomplishments yesterday. I confess to using a little emotional blackmail to pressure to go to church. Not proud of that, but I know we both always feel better about being there than we do about geting up to go. Church was a real strain on me. The trip in wasn't so bad, but the seats, the music, the people, it all just started to wear me out. Early in the sermon, which was very good, I had to leave the nave and sit alone in the side chapel. There is a sofa in there, and my friend Nathan brought me a cup of cool water and a loving pat on the cheek to soothe my face.
Is there anything so healing as a tenderness shared between friends?
Mrs P snuck out soon enough and had ice chips for me. She even managed to make a cool rag materialize. We sat together quitely while the preacher preached, the people prayed, and the body of Christ set about doing the work of God in the world. I was struck by the length of the announcements as much as their content. Not about meetings and get togethers, but about service opportunities. Chances to help. Our church's patron is St Martha, the sister who stayed in the kitchen to do the dishes. It was founded in that spirit, and as best we can, we try to stay true to her example.
I was reluctant to go back to church for a long time after a terrible fall-out at my last parish home. I thought I had finally found the church where I could really fit in - the church where my strange combination of Liberal Charismatic Presbyterian Anglo-catholicism could match up with a nest that made sense. Finally, as we will always do, the humans screwed it up. We hurt one another, over and over, often with the best of intentions. My mental health required that I separate myself from the place and the people I had loved, and I miss them every day. But I don't think I can go back. Nostalgia is no substitute for the Holy Spirit. And nostalgia is what calls me to that place.
When I first got sick, I met with our priest, Tim. I had attended services at St Martha's, but was not really a part of the parish family. I said that I didn't want to feel like a hypocrite. "Oh, gee. I'm dying. I better get to church so I can make sure there's someone to throw me a funeral." Tim assured me that there might be other benefits. He was right, of course. He's a good priest.
Home again, half a baked potato for lunch, then nap time. When I awoke a few hours later, Mrs P and Mum were both dozing like angels. Even Jake was stretched out in front of one of the air conditioner vents. I padded through the house as quietly as I could, just taking them all in. All these beautiful people who were here, pouring themselves out to help me stay alive. I watched my Mother sleeping, so vulterable with her glasses off.
There is a serenity to this waiting, so different from last week when I was waiting for everything to begin. Now we wait for all the medicine to do its work. We wait for the healing, and the side effects. We wait for the next treatment. We wait for morning and for a nap to end.
I guess we're waiting on God, too. When it comes down to the last word, God will decide what comes next. I haven't always thought too much of how that plan is unfolding, but for now, waiting is OK with me.
Changing the things I can change,
Accepting the things I cannot,
And doing my best to tell the difference.
Peace, Y'all,
pennsy
All day yesterday I was pursued by these spasms of nausea. The the right side of the base of my tongue has really started to get sore, especially if I swallow or yawn. Most annoying of all, the ringing in my ears that the chemo nurse promised me has begun in earnest. Not painful, but definitely a nuisance. So "wah, wah, wah," I have plenty to cry about today.
This morning I woke feeling better, slept pretty well through the night, but Mrs P was exhausted from all her acomplishments yesterday. I confess to using a little emotional blackmail to pressure to go to church. Not proud of that, but I know we both always feel better about being there than we do about geting up to go. Church was a real strain on me. The trip in wasn't so bad, but the seats, the music, the people, it all just started to wear me out. Early in the sermon, which was very good, I had to leave the nave and sit alone in the side chapel. There is a sofa in there, and my friend Nathan brought me a cup of cool water and a loving pat on the cheek to soothe my face.
Is there anything so healing as a tenderness shared between friends?
Mrs P snuck out soon enough and had ice chips for me. She even managed to make a cool rag materialize. We sat together quitely while the preacher preached, the people prayed, and the body of Christ set about doing the work of God in the world. I was struck by the length of the announcements as much as their content. Not about meetings and get togethers, but about service opportunities. Chances to help. Our church's patron is St Martha, the sister who stayed in the kitchen to do the dishes. It was founded in that spirit, and as best we can, we try to stay true to her example.
I was reluctant to go back to church for a long time after a terrible fall-out at my last parish home. I thought I had finally found the church where I could really fit in - the church where my strange combination of Liberal Charismatic Presbyterian Anglo-catholicism could match up with a nest that made sense. Finally, as we will always do, the humans screwed it up. We hurt one another, over and over, often with the best of intentions. My mental health required that I separate myself from the place and the people I had loved, and I miss them every day. But I don't think I can go back. Nostalgia is no substitute for the Holy Spirit. And nostalgia is what calls me to that place.
When I first got sick, I met with our priest, Tim. I had attended services at St Martha's, but was not really a part of the parish family. I said that I didn't want to feel like a hypocrite. "Oh, gee. I'm dying. I better get to church so I can make sure there's someone to throw me a funeral." Tim assured me that there might be other benefits. He was right, of course. He's a good priest.
Home again, half a baked potato for lunch, then nap time. When I awoke a few hours later, Mrs P and Mum were both dozing like angels. Even Jake was stretched out in front of one of the air conditioner vents. I padded through the house as quietly as I could, just taking them all in. All these beautiful people who were here, pouring themselves out to help me stay alive. I watched my Mother sleeping, so vulterable with her glasses off.
There is a serenity to this waiting, so different from last week when I was waiting for everything to begin. Now we wait for all the medicine to do its work. We wait for the healing, and the side effects. We wait for the next treatment. We wait for morning and for a nap to end.
I guess we're waiting on God, too. When it comes down to the last word, God will decide what comes next. I haven't always thought too much of how that plan is unfolding, but for now, waiting is OK with me.
Changing the things I can change,
Accepting the things I cannot,
And doing my best to tell the difference.
Peace, Y'all,
pennsy
Saturday, June 12, 2010
#183: The Lion Walks After Supper
It's almost 90 degrees outside at 6:10. Just had a very sloooow after supper stroll. This day off from radiation has really thrown a monkey wrench into my schedule! I'm usually worn out by now. Instead, I've been pretty much worn out all day.
Mrs P has been busy busy. She sold some furniture on Craig's List and then moved a day bed down into the room so she and Mum can sit and keep me company. And watching other people work hard has always made me tired.
Jake has been enjoying a dog day. He and Mum tried to sit outside for a while, but the yard was just stifling, even in the shade. He mostly slept where the earth was damp. I gave it a shot, but it felt like I was inhaling solid leaf mould. I retreated to the artificial cool without putting up much of a fight.
I took the last of the steroids today. That's the end of the hard core anti-nausea drugs. Now I'm down to the ones marked "as needed." I'll be sticking with them for a while, too. It isn't so much that, "Oh, my goodness here it comes..." kind of feeling as much as just a really nasty heartburn followed by some dizziness sometimes. The right kind of hiccup can make me fear for my consciousness.
The hot walking wrung me out, but if still feels good to move, however feebly. I've ordered a couple of books from Amazon about exercise during cancer treatments. I'll be sure to share any bon-bons that come along. Meanwhile, I stroll with quiet dignity, I guess. The kids recognize me of course, but wonder about where Jake is. I'm afraid to walk him. He can tug pretty hard on the leash, and I'm not sure how much tugging my PEG tube will tolerate. Now there's a 911 call I don't want to make. "Help, I've fallen and my cork has popped!"
So I walk alone. It's fine. At my best, I've always been a march to my own drummer type anyway. I passed through a family on my way around the far side of the block. Great big beautiful black momma with a bunch of children gathered around her. Their little Jack Russell Terrier hopping half-heartedly in the evening heat. Not even he could work up much spring in his step. Grampa was leaning in the window of a car that had stopped at the curb to chat. As I came even with them, a lovely child ran in front of me, on her way to her Grampa. She stopped and looked at me the way a little child in our neighborhood will ask permission from an old white man whom she doesn't really know very well. I grinned and said, "Well, excuse me, Ma'am" and invited her to pass. Momma smiled approvingly. I'm not sure I've ever felt so harmless.
Toothless old lion walking in the evening sun after dinner. It's kind of liberating, actually.
Mrs P has been busy busy. She sold some furniture on Craig's List and then moved a day bed down into the room so she and Mum can sit and keep me company. And watching other people work hard has always made me tired.
Jake has been enjoying a dog day. He and Mum tried to sit outside for a while, but the yard was just stifling, even in the shade. He mostly slept where the earth was damp. I gave it a shot, but it felt like I was inhaling solid leaf mould. I retreated to the artificial cool without putting up much of a fight.
I took the last of the steroids today. That's the end of the hard core anti-nausea drugs. Now I'm down to the ones marked "as needed." I'll be sticking with them for a while, too. It isn't so much that, "Oh, my goodness here it comes..." kind of feeling as much as just a really nasty heartburn followed by some dizziness sometimes. The right kind of hiccup can make me fear for my consciousness.
The hot walking wrung me out, but if still feels good to move, however feebly. I've ordered a couple of books from Amazon about exercise during cancer treatments. I'll be sure to share any bon-bons that come along. Meanwhile, I stroll with quiet dignity, I guess. The kids recognize me of course, but wonder about where Jake is. I'm afraid to walk him. He can tug pretty hard on the leash, and I'm not sure how much tugging my PEG tube will tolerate. Now there's a 911 call I don't want to make. "Help, I've fallen and my cork has popped!"
So I walk alone. It's fine. At my best, I've always been a march to my own drummer type anyway. I passed through a family on my way around the far side of the block. Great big beautiful black momma with a bunch of children gathered around her. Their little Jack Russell Terrier hopping half-heartedly in the evening heat. Not even he could work up much spring in his step. Grampa was leaning in the window of a car that had stopped at the curb to chat. As I came even with them, a lovely child ran in front of me, on her way to her Grampa. She stopped and looked at me the way a little child in our neighborhood will ask permission from an old white man whom she doesn't really know very well. I grinned and said, "Well, excuse me, Ma'am" and invited her to pass. Momma smiled approvingly. I'm not sure I've ever felt so harmless.
Toothless old lion walking in the evening sun after dinner. It's kind of liberating, actually.
#182: What Cancer Can't Kill
My sleep? Sure. My confidence? Absolutely. But Cancer will never knock the hope out of me. Whatever God is up to, no matter how much I hate the working out of the plan, it is better than anything I can ask or imagine. How do I know? Because I woke up today.
I had a friend who used to share this exchange with me each morning.
"How are you today, Miss April."
"Honey, any day I get up out of bed is a good day."
There may come days when getting up is not an option for me. But still, morning will feel like a victory. The silence of the night gives way to Mum clearing her throat in the next room. Mrs P hums softly in her sleep. Jake's toenails click on the wood floors as he waits to make his first trip outside for the day. The windows are closed today. Too muggy for the luxury of damp moldy air, but when I open the door, the warm humidity greets me like a too friendly aunt with a loving, slightly sticky embrace.
When I began this blog, in earnest, it was about running. Running for my life. I was faithful in my workouts and had real success until I let myself be kicked down into the gutter. Losing my job back in 2008 was a blow from which I didn't know how to recover. It took away my hope. Oh, I kept fighting, but I'm not sure if my heart was really in it. In the course of the next few months, I spent time in hospitals and doctors' offices trying to regain myself. I haven't written much about all that. Later.
I found out a lot about old Pennsy, but I didn't find his spirit again. I didn't find the guy who hit the gym five days a week because it felt so good to do something he's never done before. I didn't find the geezer who tore up his calves trying to keep up with a pair of coeds who were walking in a charity race. I lost track of the idiot who was too stubborn or shy to ask for a spotter, and almost cut himself in half on the bench press one day. Or the guy who could finally do a dip press and squat his own weight.
I think I'm finding him again. He walks. He walks like an old man, hobbling around the block. Maybe a 10th of a mile, once or twice a day. But by God, the Fat Man is Walking. Morning is best, or right after a nap. I think that has something to do with last night's post. The night can feel like a coffin, sometimes. Walking feels like life.
I know there may come a time when Cancer takes that, too. It's not something I would welcome. I have yet to come to term with my own mortality, I promise you. Mrs P's Mamma once told me, "They all say I should stay home like a sick old lady. Well, I'm not gonna do it. When death comes for me, he's not gonna find me lying in my bed, he's gonna have to come looking for me running the roads in my old car."
Well when he comes looking for Pennsy, he's gonna find this Fat Man Running, with God's mysterious help.
Peace, y'all.
pennsy
I had a friend who used to share this exchange with me each morning.
"How are you today, Miss April."
"Honey, any day I get up out of bed is a good day."
There may come days when getting up is not an option for me. But still, morning will feel like a victory. The silence of the night gives way to Mum clearing her throat in the next room. Mrs P hums softly in her sleep. Jake's toenails click on the wood floors as he waits to make his first trip outside for the day. The windows are closed today. Too muggy for the luxury of damp moldy air, but when I open the door, the warm humidity greets me like a too friendly aunt with a loving, slightly sticky embrace.
When I began this blog, in earnest, it was about running. Running for my life. I was faithful in my workouts and had real success until I let myself be kicked down into the gutter. Losing my job back in 2008 was a blow from which I didn't know how to recover. It took away my hope. Oh, I kept fighting, but I'm not sure if my heart was really in it. In the course of the next few months, I spent time in hospitals and doctors' offices trying to regain myself. I haven't written much about all that. Later.
I found out a lot about old Pennsy, but I didn't find his spirit again. I didn't find the guy who hit the gym five days a week because it felt so good to do something he's never done before. I didn't find the geezer who tore up his calves trying to keep up with a pair of coeds who were walking in a charity race. I lost track of the idiot who was too stubborn or shy to ask for a spotter, and almost cut himself in half on the bench press one day. Or the guy who could finally do a dip press and squat his own weight.
I think I'm finding him again. He walks. He walks like an old man, hobbling around the block. Maybe a 10th of a mile, once or twice a day. But by God, the Fat Man is Walking. Morning is best, or right after a nap. I think that has something to do with last night's post. The night can feel like a coffin, sometimes. Walking feels like life.
I know there may come a time when Cancer takes that, too. It's not something I would welcome. I have yet to come to term with my own mortality, I promise you. Mrs P's Mamma once told me, "They all say I should stay home like a sick old lady. Well, I'm not gonna do it. When death comes for me, he's not gonna find me lying in my bed, he's gonna have to come looking for me running the roads in my old car."
Well when he comes looking for Pennsy, he's gonna find this Fat Man Running, with God's mysterious help.
Peace, y'all.
pennsy
#181 The Silence of the Night
It's not so much the silence, as it is the imaginings that you use to fill it in. All the what ifs and wherefores that echo against the bedroom ceiling. I've always treasured these silent moments with God, but these days, I'm finding God's answers to be so unsatisfying. Why us?
I know, I'm supposed to ask, "Why NOT us?" I'm supposed to have more faith than to ask why God does things or permits things or accepts things that are so painful to the people I love. I know, I know God loves Mrs P even more than I do. God feels her pain when she suffers for her brother or husband or aunt or friends. I know all that. It's just that there are some wounds that bumper sticker theology can't bandage over.
I used to spend these evening hours fantasizing about work or running. I would imagine myself succeeding at some goal, making my family proud. I would visualize the curtain calls and the award banquets.
Nowadays, I have a checklist.
Does Mrs P know all the passwords? Does she understand our few remaining investments? Can she find all the life insurance policies? What if she had to do the taxes without me this year?
What if they overreacted to my teeth? Maybe they didn't need to take them all out. Will I ever be able to speak beautifully again? Will I ever be able to play another great Shakespearean role? Will I have to take my teeth out when I exercise at the gym?
Is Mum really comfortable on that guest bed? She has such energy. I'm sure we bore her with our long naps and afternoons with books and iced tea. Is it fair to take so much from her, no matter how lovingly she gives it?
The questions don't come in any special order because they aren't particularly rational. They just come, almost organically.
Was that a burp, or am I going to be sick?
Stomach gurgling or have I soiled the bed?
Fan blowing or ears ringing from chemo?
Jake, the golden puppy, now closer to adult than child, sighs deeply at my feet, wondering why I can't just learn to shine it on like he does. Jake takes the space he takes and lives in it contentedly. He is unhaunted by night time imagination. Jake is just Jake.
I get out of bed and make my way to the bathroom. Mix up the nasty witch's brew of warm water, salt and baking soda that is supposed to sooth the thrush that's gnawing on my tongue. Swish, spit, scrape. Swish, spit, scrape. Like gargling with Plaster of Paris. Try the hair again, still holding fast. No little pinch fulls coming out yet, not even the beard. To the toilet. What the heck? What's all over my shorts? Did I just? Yes, yes I did. Are diapers next? Wash. Change. Check the sheets. No harm done. Not yet.
It isn't torture, not really. Torture is systematic. It has a goal, a reason. This is just so random. Just a sequence of disconnection. What ties it all together? God? Cancer? Love? Money? Poor old Job didn't get his answers, why should I?
The preacher wants to know if we're angry at God. She isn't. I am. She doesn't deserve this, though maybe I do. I don't know. None of us gets what we deserve in this life, thank God. But some us us seem to get a very raw deal. Mrs P shouldn't have to bear this. Not for me. Not for anyone. I watch her pour out her life for other people and it just seems like God is piling on sometimes. Most of the time. Of course I'm mad. How could I not blame someone who hurts my wife so much?
There is a theatre festival in the part here in the Bluegrass. I was a big shot there once. Now I dream of toting my plastic Adirondack chair down to the side of the hill and watching actors soar on music and language. Some of my favorite artists in town are playing. I long to hear them under the stars. I want to join them. I want to float away on voices and color and beautiful words. There's no telling what kind of shape I'll be in by July when they open,but I am starving to see them.
I want their life in me.
I know, I'm supposed to ask, "Why NOT us?" I'm supposed to have more faith than to ask why God does things or permits things or accepts things that are so painful to the people I love. I know, I know God loves Mrs P even more than I do. God feels her pain when she suffers for her brother or husband or aunt or friends. I know all that. It's just that there are some wounds that bumper sticker theology can't bandage over.
I used to spend these evening hours fantasizing about work or running. I would imagine myself succeeding at some goal, making my family proud. I would visualize the curtain calls and the award banquets.
Nowadays, I have a checklist.
Does Mrs P know all the passwords? Does she understand our few remaining investments? Can she find all the life insurance policies? What if she had to do the taxes without me this year?
What if they overreacted to my teeth? Maybe they didn't need to take them all out. Will I ever be able to speak beautifully again? Will I ever be able to play another great Shakespearean role? Will I have to take my teeth out when I exercise at the gym?
Is Mum really comfortable on that guest bed? She has such energy. I'm sure we bore her with our long naps and afternoons with books and iced tea. Is it fair to take so much from her, no matter how lovingly she gives it?
The questions don't come in any special order because they aren't particularly rational. They just come, almost organically.
Was that a burp, or am I going to be sick?
Stomach gurgling or have I soiled the bed?
Fan blowing or ears ringing from chemo?
Jake, the golden puppy, now closer to adult than child, sighs deeply at my feet, wondering why I can't just learn to shine it on like he does. Jake takes the space he takes and lives in it contentedly. He is unhaunted by night time imagination. Jake is just Jake.
I get out of bed and make my way to the bathroom. Mix up the nasty witch's brew of warm water, salt and baking soda that is supposed to sooth the thrush that's gnawing on my tongue. Swish, spit, scrape. Swish, spit, scrape. Like gargling with Plaster of Paris. Try the hair again, still holding fast. No little pinch fulls coming out yet, not even the beard. To the toilet. What the heck? What's all over my shorts? Did I just? Yes, yes I did. Are diapers next? Wash. Change. Check the sheets. No harm done. Not yet.
It isn't torture, not really. Torture is systematic. It has a goal, a reason. This is just so random. Just a sequence of disconnection. What ties it all together? God? Cancer? Love? Money? Poor old Job didn't get his answers, why should I?
The preacher wants to know if we're angry at God. She isn't. I am. She doesn't deserve this, though maybe I do. I don't know. None of us gets what we deserve in this life, thank God. But some us us seem to get a very raw deal. Mrs P shouldn't have to bear this. Not for me. Not for anyone. I watch her pour out her life for other people and it just seems like God is piling on sometimes. Most of the time. Of course I'm mad. How could I not blame someone who hurts my wife so much?
There is a theatre festival in the part here in the Bluegrass. I was a big shot there once. Now I dream of toting my plastic Adirondack chair down to the side of the hill and watching actors soar on music and language. Some of my favorite artists in town are playing. I long to hear them under the stars. I want to join them. I want to float away on voices and color and beautiful words. There's no telling what kind of shape I'll be in by July when they open,but I am starving to see them.
I want their life in me.
Friday, June 11, 2010
#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.
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.
Thursday, June 10, 2010
#179: Something Besides Cancer
After my radiation treatment today, Mrs P and I picked up my car and drove to visit our mechanic, Paul at East Vine Radiator. He is a superb mechanic, and an ever better man. We're blessed to have been referred to him and have been taking our vehicles to him since we first came to the Bluegrass. We are definitely "clients, not customers."
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Paul, his wife, and his son all work in his shop which is neat as a pin. Besides being a magician with a motor, he is also a collector of beautiful things. There are always at least three classic Corvettes in the shop being lovingly restored. He rolls his eyes at his expensive hobby, but you can tell how proud he is of them.
He and Mrs Paul are also avid antique fans. They travel to auctions looking for bargains on Mission style furniture (our favorite!) and beautiful American pottery items. Then they turn around and sell them from their booth in a local antique mall. His eyes dance as brightly when he talks about a barrister book case or a piece of Rosewood pottery as they do when the headers thunder on one of those old Stingrays.
Paul smiles. He loves his life and his livelihood. And he is an honorable man. Many times we have gone to pick up a vehicle in the afternoon only to be told, "Oh, there's no charge It was easy. Just bring it back if that doesn't work." It always works.
What made this visit with Paul especially nice was what we didn't talk about. We didn't talk about my Cancer. It just didn't come up. For those short moments in his company, sharing our passion for pretty old things was enough. Sometimes even a narcissist likes to look away from the mirror for a little while.
View Larger Map
Paul, his wife, and his son all work in his shop which is neat as a pin. Besides being a magician with a motor, he is also a collector of beautiful things. There are always at least three classic Corvettes in the shop being lovingly restored. He rolls his eyes at his expensive hobby, but you can tell how proud he is of them.
He and Mrs Paul are also avid antique fans. They travel to auctions looking for bargains on Mission style furniture (our favorite!) and beautiful American pottery items. Then they turn around and sell them from their booth in a local antique mall. His eyes dance as brightly when he talks about a barrister book case or a piece of Rosewood pottery as they do when the headers thunder on one of those old Stingrays.
Paul smiles. He loves his life and his livelihood. And he is an honorable man. Many times we have gone to pick up a vehicle in the afternoon only to be told, "Oh, there's no charge It was easy. Just bring it back if that doesn't work." It always works.
What made this visit with Paul especially nice was what we didn't talk about. We didn't talk about my Cancer. It just didn't come up. For those short moments in his company, sharing our passion for pretty old things was enough. Sometimes even a narcissist likes to look away from the mirror for a little while.
Wednesday, June 9, 2010
#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.
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.
Tuesday, June 8, 2010
#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.
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.
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.
Monday, June 7, 2010
#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
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
Sunday, June 6, 2010
#175: How Can I Help My Friend Who Has Cancer?
"How can I help?" my friend asks me this every time she calls. I love her so much for that, but I really don't know what to tell her. Today I heard such helplessness in her voice. She wants to do something, but doesn't want to do the wrong thing. Again and again she says the loving words I have used myself at funerals and hospital beds.
"If there is anything I can do, please let me know."
I say it because I mean it. I was raised by a man who would drop everything for a friend in need. My dad would have been the man in the parable of the Samaritan who stopped and helped. Also, I was born under the sign of Leo the Lion. I am fiercely protective of the people in my circle. I know that my friend feels the same way about me.
Trouble is, I don't know what the hell to tell her. I can't make decisions these days. Asking me what I want for supper can send me into a rage of tearful frustration. I don't know what I want. All I know is how grateful I am when anyone reaches out to help, no matter what they do. A note, a blog comment, a facebook message, a phone call. Yesterday, someone brought a basket of food that we can prepare later. A friend from college showed up with a gallon of soup. A woman I have known since elementary school had a yard sale and sent us a check. An old acting buddy and five year survivor stopped by to share his own cancer stories. My neighbor, with whom I have probably exchanged 200 words in 10 years mows our lawn every week.
Some of these things are huge. Some are very small. But all of them share one thing in common. They remind me that I am alive. That I matter. That someone cares.
I'm so grateful for that.
What follows is not a wish list. Please, don't take it like that. These are links to resources I have found to help people who want to help. I'm probably not the only person you know who is surviving cancer. I sure won't be the last. Or maybe you and your family have lived through cancer treatment, too. Leave a comment on what helped (or didn't.) Together, maybe we can help the next family.
My Friend Has Cancer. How Can I Help?
Your friend has been diagnosed with cancer but you're the one freaking out: What can I do? How should I act? Is it OK to talk about it? What's "normal" now?
Things You Need to Know About Cancer, But Don't Really Want to Ask.
So just what are people supposed to do or say around people who are in the process of undergoing treatment to battle cancer, or to someone who has recently survived cancer? I certainly can't speak for everyone but here are a few things that people did for me, or things I wish they would have done or said, during treatment and after (in no particular order).
Helping a Friend Through Cancer- Lori Hope
- "It's okay to say or do the 'wrong' thing."
- "I like to hear success stories, not horror stories."
- "I need to forget and laugh."
- "I need to feel hope."
- "Telling me to think positively can make me feel worse."
My Friend Has Been Diagnosed With Sarcoma - How Can I Help?
Patients and their families often have a hard time answering the question: "What can I do?" If they answer with a specific need, they feel as if they are imposing or asking too much. So take the guilt out of a gift by choosing something yourself. Here are some useful gift ideas that were developed by a group of sarcoma patients and survivors.
How to Talk to a Friend With Cancer
You are confronted with the possibility of death, and you are afraid. And, in a way, you are relieved it's not you. It brings up so many fears.
How to Help a Friend With Cancer
Remember, most of us don't look good in yellow. Lance Armstrong can trigger feelings of inadequacy in the best of us. Even his heroic name, straight from a Dickens novel, can make a girl feel puny and defenseless. Although I enjoyed reading about his ordeal and all those yellow jerseys after my treatment was over, early mentions of him made me wonder if I really had what it took to conquer the beast, or even if I deserved to win.
"If there is anything I can do, please let me know."
I say it because I mean it. I was raised by a man who would drop everything for a friend in need. My dad would have been the man in the parable of the Samaritan who stopped and helped. Also, I was born under the sign of Leo the Lion. I am fiercely protective of the people in my circle. I know that my friend feels the same way about me.
Trouble is, I don't know what the hell to tell her. I can't make decisions these days. Asking me what I want for supper can send me into a rage of tearful frustration. I don't know what I want. All I know is how grateful I am when anyone reaches out to help, no matter what they do. A note, a blog comment, a facebook message, a phone call. Yesterday, someone brought a basket of food that we can prepare later. A friend from college showed up with a gallon of soup. A woman I have known since elementary school had a yard sale and sent us a check. An old acting buddy and five year survivor stopped by to share his own cancer stories. My neighbor, with whom I have probably exchanged 200 words in 10 years mows our lawn every week.
Some of these things are huge. Some are very small. But all of them share one thing in common. They remind me that I am alive. That I matter. That someone cares.
I'm so grateful for that.
What follows is not a wish list. Please, don't take it like that. These are links to resources I have found to help people who want to help. I'm probably not the only person you know who is surviving cancer. I sure won't be the last. Or maybe you and your family have lived through cancer treatment, too. Leave a comment on what helped (or didn't.) Together, maybe we can help the next family.
My Friend Has Cancer. How Can I Help?
Your friend has been diagnosed with cancer but you're the one freaking out: What can I do? How should I act? Is it OK to talk about it? What's "normal" now?
Things You Need to Know About Cancer, But Don't Really Want to Ask.
So just what are people supposed to do or say around people who are in the process of undergoing treatment to battle cancer, or to someone who has recently survived cancer? I certainly can't speak for everyone but here are a few things that people did for me, or things I wish they would have done or said, during treatment and after (in no particular order).
Helping a Friend Through Cancer- Lori Hope
- "It's okay to say or do the 'wrong' thing."
- "I like to hear success stories, not horror stories."
- "I need to forget and laugh."
- "I need to feel hope."
- "Telling me to think positively can make me feel worse."
My Friend Has Been Diagnosed With Sarcoma - How Can I Help?
Patients and their families often have a hard time answering the question: "What can I do?" If they answer with a specific need, they feel as if they are imposing or asking too much. So take the guilt out of a gift by choosing something yourself. Here are some useful gift ideas that were developed by a group of sarcoma patients and survivors.
How to Talk to a Friend With Cancer
You are confronted with the possibility of death, and you are afraid. And, in a way, you are relieved it's not you. It brings up so many fears.
How to Help a Friend With Cancer
Remember, most of us don't look good in yellow. Lance Armstrong can trigger feelings of inadequacy in the best of us. Even his heroic name, straight from a Dickens novel, can make a girl feel puny and defenseless. Although I enjoyed reading about his ordeal and all those yellow jerseys after my treatment was over, early mentions of him made me wonder if I really had what it took to conquer the beast, or even if I deserved to win.
Saturday, June 5, 2010
#174: Lessons From the Theatre
With the exception of my wedding and a few special New Year's Eve celebrations with Mrs P, I have spent the best parts of my life on stage. Acting is the only job I've ever really loved. It is often painful, always rewarding, and on rare occasions, positively mystical.
It occurred to me today that I've spent so many years playing characters who endured trials, I might turn to them to learn how to conduct myself during my own survival journey.
The first time I played Tevye I knew that I wanted to spend my life performing. On opening night, as I stood high atop my little milk wagon taking in the applause after If I Were a Rich Man I was positively drunk with the audience's approval. It was many years later - around thirty I think - that I was able to play the role again, and learned about the heart of this big, beautiful man. For him, family is everything. No matter how hard the world is on him, no matter how far away his children travel, he and Golde remain bound with cords of love that no Tzar or Cossack can sever. The dairyman from Anatevka taught me that love is the source of our strength and our life.
The Tempest is Shakespeare's story of a wronged Duke, Prospero and his revenge on the brother who unjustly banished him and his daughter on a deserted island. He has every right to be angry, and using magic powers he conjurs a storm that maroons the cruel brother and his fellow travellers from Naples. Prospero and the fairies who serve him devise more and more powerful ways to torment the party, but just at the moment when his final vengance is complete, the old magicial changes his mind. He himself is tormented, not by guilt, but by the innocence of his daughter and his sprite, Ariel. Prospero chooses mercy over justice, and because of that choice, he is redeemed.
I also have a lot to be angry about. I've been mistreated by the insurance company, old employers, friends who disappeared when things got tough. I could spend - and to be honest, I have spent - lots of time blaming and fantasizing my own vengence on the people who may not have caused my cancer, but have certainly made it more difficult for me and the people I love. Such thoughts are tempting, and perversely gratifying, I must admit. But they will not help me to redeem my life back from the disease that is trying to lay claim to it. Like Prospero, I have not choice but to forgive the people who torment my nights.
Nick Bottom is a complete jackass. So much so, that he is given a donkey's head in which to woo Titania, the queen of the fairies in A Midsummer Night's Dream. Bottom has little talent and less craft, but by golly he loves his friends and he loves the theatre. The chance to play makes his heart soar and his enthusiasm lifts his fellow mechanicals to heights beyond their wildest dreams. Bottom loves unconditionally. It's as simple as that. He finds wonder everywhere and ecstasy in the crazy poetry of life. He gives himself away completely, and in doing so, he is glorified.
I lack Bottom's purity of heart, but I know what it means to love what you do. In that, I am a lucky man. I know what it is to love the people around you without reservation. In that, I am a rich man. No matter how much depression and cancer may try to convince me otherwise, I know I have a reason to live. I need to live, because I am not finished loving yet.
In the dark days ahead, I will remember the lessons these teachers have given me. I gave my all to do right by them, and I know they will not abandon me in my hour of need. And when the Dark Angel has passed me over at last, I am determined to return to them. I am not finished learning yet, either.
It occurred to me today that I've spent so many years playing characters who endured trials, I might turn to them to learn how to conduct myself during my own survival journey.
I also have a lot to be angry about. I've been mistreated by the insurance company, old employers, friends who disappeared when things got tough. I could spend - and to be honest, I have spent - lots of time blaming and fantasizing my own vengence on the people who may not have caused my cancer, but have certainly made it more difficult for me and the people I love. Such thoughts are tempting, and perversely gratifying, I must admit. But they will not help me to redeem my life back from the disease that is trying to lay claim to it. Like Prospero, I have not choice but to forgive the people who torment my nights.
I lack Bottom's purity of heart, but I know what it means to love what you do. In that, I am a lucky man. I know what it is to love the people around you without reservation. In that, I am a rich man. No matter how much depression and cancer may try to convince me otherwise, I know I have a reason to live. I need to live, because I am not finished loving yet.
In the dark days ahead, I will remember the lessons these teachers have given me. I gave my all to do right by them, and I know they will not abandon me in my hour of need. And when the Dark Angel has passed me over at last, I am determined to return to them. I am not finished learning yet, either.
Thursday, June 3, 2010
#173: All Along the Waterfall
Yesterday was a painful one, the first time my depression really inserted itself into this whole cancer situation. I had a restless, sleepless night and after fitfully dozing just before dawn, I woke up in a panic. I felt as if I were in my grave. The stale air conditioned air seemed to suffocate me. Panicked, I begged Mrs P to open the windows. I wanted to hear the birds and smell the earth outside. I wanted to see the sun coming in through the curtains as they billowed, filling the room with the late spring air. I wanted to hear the kids on the way to the bus and the grownups driving off to work. I wanted to be sure I was still alive. She did as I asked, then covered my eyes with a cool cloth and lay beside me till I slept.
Mental illness has been my companion for a long time - maybe all my life. Deep depressions can fall on me without warning. Something in my brain is on a hair trigger, and I never know what it takes to pull it. I have been surprised that the devil has left me alone for so long. It seems like cancer and depression should go hand in hand. Both lead to a longing for any relief, even death. Mercifully, my shadowy friend did not stay long. I don't really have the strength for long visits from anyone these days.
Tonight, I'm listening to the gentle song of the evening birds, so much less busy than their morning cousins. They seem to whistle to themselves as they are tiding up for the night. There is a big storm system to the south, heading for the eastern mountains. No flood warnings in our part of the Bluegrass, only the faint smell of earth and the promise of a cooling weather front bearing rain.
I'm sure it is a cliche to say that the proximity of death heightens one's senses. I do seem to smell more deeply. I hear individual voices among the birds and bugs and critters in my neighborhood. Today, as she changed the dressing on my PEG tube, I gazed at Mrs P, this woman I have loved for almost a quarter of a century. My god, but she is beautiful. In her eyes I saw the compassion and expertise she has developed after years of looking after animals and the people who love them. As she carefully cleaned me and placed the fresh bandage in the morning light, I watched the years melt from her face. The hair was dark again, the skin pale and clear, the lines of worry and laughter and tears faded away and she was the young girl whose devilish smile broke my heart within minutes of meeting her. I never had a chance.
When she had finished, she turned and looked at my moist eyes. She smiled and kissed me. Her face returned to its familiar shape and color. She was not the girl I married, but the woman I have come to love with all my heart. Her hair is not what it once was, but her eyes - Oh those beautiful brown eyes...
Hey where did we go,
Days when the rains came
Down in the hollow,
Playin' a new game,
Laughing and a running hey, hey
Skipping and a jumping
In the misty morning fog with
Our hearts a thumpin' and you
My brown eyed girl,
You my brown eyed girl.
Some things, not even death can change.
If you need me, look in the green grass, behind the stadium...
Mental illness has been my companion for a long time - maybe all my life. Deep depressions can fall on me without warning. Something in my brain is on a hair trigger, and I never know what it takes to pull it. I have been surprised that the devil has left me alone for so long. It seems like cancer and depression should go hand in hand. Both lead to a longing for any relief, even death. Mercifully, my shadowy friend did not stay long. I don't really have the strength for long visits from anyone these days.
Tonight, I'm listening to the gentle song of the evening birds, so much less busy than their morning cousins. They seem to whistle to themselves as they are tiding up for the night. There is a big storm system to the south, heading for the eastern mountains. No flood warnings in our part of the Bluegrass, only the faint smell of earth and the promise of a cooling weather front bearing rain.
I'm sure it is a cliche to say that the proximity of death heightens one's senses. I do seem to smell more deeply. I hear individual voices among the birds and bugs and critters in my neighborhood. Today, as she changed the dressing on my PEG tube, I gazed at Mrs P, this woman I have loved for almost a quarter of a century. My god, but she is beautiful. In her eyes I saw the compassion and expertise she has developed after years of looking after animals and the people who love them. As she carefully cleaned me and placed the fresh bandage in the morning light, I watched the years melt from her face. The hair was dark again, the skin pale and clear, the lines of worry and laughter and tears faded away and she was the young girl whose devilish smile broke my heart within minutes of meeting her. I never had a chance.
When she had finished, she turned and looked at my moist eyes. She smiled and kissed me. Her face returned to its familiar shape and color. She was not the girl I married, but the woman I have come to love with all my heart. Her hair is not what it once was, but her eyes - Oh those beautiful brown eyes...
Hey where did we go,
Days when the rains came Down in the hollow,
Playin' a new game,
Laughing and a running hey, hey
Skipping and a jumping
In the misty morning fog with
Our hearts a thumpin' and you
My brown eyed girl,
You my brown eyed girl.
Some things, not even death can change.
If you need me, look in the green grass, behind the stadium...
#172: The End of the Beginning
I can see the mouth of the tunnel from here. We went to the doc to day to check on the PEG tube. It's been a rough week since it was placed. I developed an infection around the site where it pops out of my belly. We wound up on the ER on Saturday morning of Memorial day weekend. They gave me some antibiotics and sent me home. Today the surgeon gave me a clean bill. The infection has cleared up, the tube looks good, and we are all clear to start chemo and radiation on Monday. At last.
It's funny. I'm looking forward to starting what promises to be the worst part of my treatment. I'm not sure though. The waiting has been pretty bad. Anticipating something awful can be worst than the thing itself. Like waiting in the office to see the elementary school principal.
There were horror stories about Miss Grove and the instruments of torture she kept in her small chamber. The most dreaded was the "Electric Paddle." It was said that only the worst of the worst miscreants of our school had ever even seen, let alone felt it. I'm not sure I ever even heard anyone explain what it was. Only that it was the most cruel, painful punishment imaginable. I made a trip or two into that office. I was whacked with a ruler once or twice, and I have a vague recollection of a confiscated paddle-ball paddle, but I never did see the evil machine hidden in her closet.
That's what this feels like, this waiting for treatment to start. All the preliminaries are complete. Tumor cut out. Teeth gone. Tube installed. They have prepared me for the worst, and my imagination has filled in the rest. I have no idea what awaits me in those dark little rooms full of needles and isotopes and whirring machines. I only know that I am exhausted with dreading them. I'm ready to go.
The beginning of my Cancer treatment is over. Time to turn toward the tunnel.
It's funny. I'm looking forward to starting what promises to be the worst part of my treatment. I'm not sure though. The waiting has been pretty bad. Anticipating something awful can be worst than the thing itself. Like waiting in the office to see the elementary school principal.
There were horror stories about Miss Grove and the instruments of torture she kept in her small chamber. The most dreaded was the "Electric Paddle." It was said that only the worst of the worst miscreants of our school had ever even seen, let alone felt it. I'm not sure I ever even heard anyone explain what it was. Only that it was the most cruel, painful punishment imaginable. I made a trip or two into that office. I was whacked with a ruler once or twice, and I have a vague recollection of a confiscated paddle-ball paddle, but I never did see the evil machine hidden in her closet.
That's what this feels like, this waiting for treatment to start. All the preliminaries are complete. Tumor cut out. Teeth gone. Tube installed. They have prepared me for the worst, and my imagination has filled in the rest. I have no idea what awaits me in those dark little rooms full of needles and isotopes and whirring machines. I only know that I am exhausted with dreading them. I'm ready to go.
The beginning of my Cancer treatment is over. Time to turn toward the tunnel.
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.
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.
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.
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.
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.
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.
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