Monday, September 29, 2008

Soda Bread

I’ve been part of a writers’ critique group for a dozen years or more. There are half-dozen of us, give or take one or two, depending on our schedules. We meet once a month, always at someone’s home, and read and critique some of our recent work.

Sometimes it’s not a lot of fun to be part of a group like this. Egos can clash. Feelings can be hurt. If, as sometimes happens, you’re forced to sit and listen to really terrible writing at every meeting, violence may ensue.

I’m lucky. The group I’m in is comprised of writers who’ve already published or who deserve publication. We’re good for each other.

I haven’t been able to attend every meeting over the last year or so. Sometimes chemo has gotten in the way and sometimes I just haven’t been up to it. But these friends have steadily let me know of their love, with phone calls and e-mails.

I went to a critique group meeting yesterday. There were only a few of us there: Sylvia and Linda and Donna and Peter and me. I was asked to read first. So I did. A couple of sections of the memoir I’m working on. And then we talked. Sylvia told me how much she’d learned about me by reading this blog and by hearing parts of my story. Donna and Linda and Peter agreed. They told me they were happy I was finally opening myself up a bit.

I know I’ve spent most of my life not disclosing anything real about myself. Some of that is cultural. Irish men aren’t known for sober displays of emotionalism. It’s easier to hide behind a façade of toughness or to tell a joke or sing a song or just act as if it – whatever it is – doesn’t really matter.

Some of it is because there’s some stuff that’s always been too painful or embarrasing.

But I realized as we talked yesterday that I was glad I’d found a way to open up. This is new for me, but it’s okay. It’s not so bad having people know how I feel, that I’m afraid or sad or happy or whatever. As important as these people – Sylvia and Peter and Donna and Linda – have been to me they’re more important now.

We snack at these meetings. Yesterday, there was cheese and fruit and crackers. Since it was Linda’s birthday, there was a cake. And before I left, Sylvia gave me three small loaves of Irish soda bread.

I’d never eaten soda bread until I met Sylvia, who’s from Ireland. My mother didn’t bake much. Only an infrequent pie or one of her noteworthy cakes that always seemed to be listing slightly to port or starboard after they were iced. She didn’t bake bread because that wasn’t something one did with one’s rare leisure time. When she was a girl, baking bread was a time-consuming and necessary chore. Buying bread already sliced from a bakery was, for her, the beginning of women’s liberation.

Anyway, I’m not used to soda bread, but I love it. Served with what the Irish call a thick "lashing" of butter it’s good enough to make me close my eyes. I had some this morning for breakfast. And as I ate it, I thought of the group and of how lucky I am to have these friends and of how it’s really okay with me that they know more about me than they used to.

Friday, September 26, 2008

Dying Ain't Fun

I just finished reading Art Buchwald’s book, "Too Soon to Say Goodbye," written, much of it, while he was in a hospice in Washington.

Buchwald was lucky. In early 2006 he went in the hospice expecting to die from kidney failure. By his own admission, he figured he had about three weeks to live. Instead, his kidneys somehow got better. In June of that year he left the hospice for his summer home on Martha’s Vineyard. He lived, finally, until January 17, 2007.

Buchwald was comfortable with the idea of his death. He had the opportunity to undergo kidney dialysis and, instead, decided to die with dignity. As it worked out, he lived longer than anybody expected and had a great time in the hospice. He was visited by family and friends and by politicians and newsmen and people he’d never met. He ate what he wanted to eat. He was awarded the French equivalent of the Legion of Honor for his writing. He was spoiled.

"I never realized dying could be so much fun," he wrote.

You know, Buchwald was right, but only part right.

Of course, being sick isn’t a lot of fun. And not everybody has the chance to make going gentle into that good night a protracted visit with loved ones. Pain is pain, no matter what your outlook.

But still….

What made Buchwald’s end so much fun was his decision that, no matter how much time he had left, he was going to focus all his energies on living his life to the fullest. I know that reads as cloyingly maudlin as a bad greeting card but I can’t think of a better way to write it.

It isn’t always easy to do that, to focus on today rather than tomorrow or the month after this one or on the coffin that waits. But it’s the only way to make today worth living, isn’t it? It’s the only way – to steal again from Dylan Thomas – to "rage, rage against the dying of the light."

In a way, when I allow that to happen, when I allow myself that focus, it does work to make today sweeter than any day in the past. It infuses the day with excitement, with light. In those moments, Buchwald is right. Dying is fun.

I saw my VA therapist today, a smart, gentle woman named Linda Vesley. "Do you think about death every day?" she wondered.

I told her I did, not because I wanted to but because it’s always lurking right below the surface, waiting. All it takes is someone asking how I am or the mention of cancer on the news or any other reminder that I have this disease and there I go again, thinking about death.

When that happens, and it happens frequently, it takes at least a few minutes to get my focus back. And when that happens, Buchwald is wrong. Dying ain’t fun at all.

Wednesday, September 24, 2008

Birthday Party

Early yesterday, I had to go to the VA for a cat scan. I was afraid, this time. I’m usually not but the last one I had showed my main tumor had grown a bit. This time, I fear, the news will be worse and then it’ll be time for chemo again. That's if I’m lucky.

Before the scan, I had to drink some barium. The last time I had one I drank banana-flavored barium. It didn’t taste too bad. This time, just to be different, I tried vanilla flavored. It wasn’t as good. Usually, the barium doesn’t bother me but yesterday, for some reason, it made me nauseous. Maybe because I was afraid.

After I came home, my wife – Lynne – and I celebrated her birthday. She loves presents as much as a little girl. When she opens a gift, her whole face lights up. Sometimes she giggles.
Buying her a present is always fun, always a pleasure, because I know how happy she’ll be, no matter what the gift.

Yesterday, she got clothes, a couple of necklaces, and a jazz CD from her sister, Jennifer, who lives in Richmond. I gave her a purse and a hat and dress she’d picked out. Her father gave her a check. She used a little of that money to buy herself a pair of shoes. I don’t think a man would be very happy if he got a pair of shoes as a gift. I guess that’s because to most men buying shoes is like buying tires for a car. More necessary than pleasurable. Lynne, however, loves shoes the way I love sailing.

I gave her three cards: two funny ones including a card with a picture of a monkey inside. For some reason, she loves monkey-pictures as much as shoes. The third card was mushy. It talked about love and how happy she’s made me and then said something about how I hoped we’d have a hundred more birthdays together.

When she read that card, she cried, just a little, but enough to let me know she cared.

After my nap, we went out for a late lunch in honor of the day. We didn’t go to a fancy place, just a seafood restaurant we both enjoy.

I couldn’t help myself. I kept looking at Lynne all during the meal. Every time I looked, she was smiling, her eyes were bright and she was beautiful. Happiness is like that. It’s attractive.
We ate fresh fish and then Lynne ordered chocolate cake with vanilla ice cream and chocolate sauce, a special birthday treat. Again, she was happy.

During the meal, while we ate and she got chocolate sauce on her chin, we didn’t talk about the cancer, or the cat scan, or the fact that I was still nauseous from the barium. We didn’t talk about the truth that – despite what the mushy card said – we weren’t going to have a whole lot of birthdays together.

I’m glad we didn’t talk about that stuff. It was nice to be free of the cancer for a bit, to take a break, to have lunch with my wife and see her smile.

Monday, September 22, 2008

Heaven or Hell

When I was a child going to Catholic grade school in Chicago, I knew with certainty that I’d be headed for what we called "the bad place" as soon as I died. My sins were legion and unspeakable.

Now, I’m not so sure.

First, I’m not sure there’s a heaven that’s anything like the one I learned about from the nuns at Our Lady of Peace School. There’s not a place where I’d be given a seat on some cloud and a little harp and told to enjoy myself for eternity. Obviously enough, if there's no heaven with little harps then there's no hell with pitchforks.

That’s a relief.

The Catholic Church taught that as soon as I died I would go through "particular judgment." As a sinner, I stood no chance. My body would be buried and my soul sent on to hell. Later, at the end time, my body would rise to be reunited with my soul for the "last judgment."

My fevered little mind developed the terrible belief that on judgment day I’d hop out of my grave and join a huge crowd gathered in a place akin to the world’s largest drive-in movie, only without cars. There, all the people who ever lived would be gathered, souls reunited with bodies, watching films. Each film would show all the good and bad ever done by one individual.

I hated the idea of my mother and father and friends knowing about all my sins. About all the nickels I filched from my mother’s purse. About my lies. What I really did when I was supposed to be taking a shower.

I’m glad I don’t believe that any more. That belief has been replaced by uncertainty. I just don’t know, any more than anybody else, what ultimately awaits.

I like to think, though, that no matter what heaven and hell are like, I’ve paid for my sins already. I’ve been a pretty decent guy for the last dozen years or so and I was never, not even at my worst, bad enough to be forced to spend eternity in hell.

I think maybe God really is a "higher power," some sort of beneficent, loving, tolerant force that put everything in motion and that when I die I’ll simply return to become part of that power.

That sounds good.

I have an old, tiny photograph taken when I was about four years old. In the photo, my father and I are walking down a beach, away the photographer, undoubtedly my mother. My dad and i are holding hands. I remember the bathing suit he used to wear. It was beige, decorated with green palm trees and orange flamingos. I remember the way he’d hold my hand, gentle in his big workingman’s hand. And I remember how safe and serene I felt in those moments.

I think that’s where I’ll be after I die. Not on that beach but in that feeling.

I hope so.

I heard somebody I met in the sober fellowship I'm in say that when he died he hoped he "would go to that big meeting in the sky."

Not me. I'll pass on that. I’d rather go to that big package store in the sky.

If not that, walking on the beach with my old man will suffice.

Friday, September 19, 2008

The View

My wife and I are fortunate. We live in an apartment overlooking the Lake Worth Lagoon, in Florida. The lagoon is part of the Intracoastal Waterway on Florida’s east coast. When we look out the sliding-glass door that serves as the eastern wall of our living room, we can see the lagoon and beyond that the barrier island just south of Palm Beach. By straining just a bit we can see, beyond that narrow island, the vast sweep of the Atlantic Ocean.

People travel hundreds, often thousands of miles and spend a lot of money to see the view we can see every day of the year. The few visitors we have always, or almost always, stop to look out the window, remark about the beautiful view.

I’m spoiled.

I’m so accustomed to the view that days or weeks go by without my looking out the window. I walk across the living room with my eyes open but unseeing. In the three years we’ve had this apartment I’ve only sat on the balcony outside that sliding glass door, looking to the east, a half-dozen times, no more than that.

That’s a shame.

Before I got sick, I used to be too busy. For months and months I was too busy to look out the window. I sat at a computer day after day writing an average of 2,000 words each day. A million words every 18 months, give or take 100,000 words or so.

Now I can barely stand to work more than a couple of hours at a time. I’m just too tired. And still I have to remind myself to look out the window.

This morning, when I took the time to look I saw an osprey soaring right at the level of our sixth-floor apartment.

I’m going to look more often. I promised myself. Why not? I can’t work so I may as well enjoy myself.

Wednesday, September 17, 2008

Cranky

I’m cranky right now. My nose is bleeding. I’m sitting at my computer with a wad of toilet tissue stuck up my right nostril in the hope that blood won’t get all over my penultimate, or second to last, clean tee-shirt. (I don’t wear a shirt when I’m working. Sometimes I don’t even wear pants. I work alone so it’s okay. I say that knowing it’s an image that may, if you have ever seen me, make you cranky or make your nose bleed.)

I know I’m supposed to look on the bright side. I also know a nose-bleed is not a real big deal in this world of ours. Still. I’m cranky.

Than I remember that if I really wanted to do something about my nosebleed, all I would have to do is call the veterans hospital where I get my care and a nurse or doctor would either tell me what to do or tell me to get into the emergency room.

That made me think how lucky I am. I guess I mean that even with a nosebleed and cancer I can see the bright side.

I didn’t much like being in the air force almost 50 years ago. I thought I would when I saw the television commercials showing jet aircraft screaming across the sky and happy men and women – they were on leave, I guess – standing in front of the Louvre or a pyramid. I never got to fly a jet and by the time I got to Japan, my overseas posting, I was already itching to get back to civilian life.

When I got cancer and contacted the VA, nobody ever asked me if I liked being a serviceman. I’m lucky they didn’t. Nobody asked if my cancer was somehow service related. I’m lucky there, too. I told them only service-related injury I suffered was a cracked noggin when I fell off a bar stool in Tokyo or maybe Yokohama.

Come to think of it, the people at the VA hospital didn’t ask me much at all. Instead, they told me they’d take care of me. That was good news. If my treatment depended on the level of my happiness when I was in the service, I’d be dead already.

Two courses of chemo, surgery for a blocked artery, hospitalization four times in two years, psychological help to deal with the disease, and on and on. When I say I’d be dead without the VA, I’m not overstating the case. I would be, no doubt.

All in all, it seems I got a good deal for my four not-so-happy years in uniform, even if I never did get to fly a jet.

And as I’ve been thinking about all this, and counting my blessings, my nose stopped bleeding.

Tuesday, September 16, 2008

The taste of a date

Years ago, I had what could be called "a bit of a problem" with alcohol. It could also be called a "big, big problem." The problem was that I wanted to drink every day and once I started drinking I just couldn’t stop. It cost me a lot over the years in terms of losses I needn’t and shouldn’t go into here. What’s important is the fact that about 13 years ago, with the help of a fellowship of sober drunks, I finally got it. I quit. And I haven’t had a drink since then.

More than once since I was diagnosed with lung cancer, a friend or acquaintance has asked how I’ve been able not to drink in the face of this disease. It’s funny. The idea of drinking hasn’t even entered my mind…at least not as a serious possibility.

Why on earth would I want to make the time I have left miserable? Even if misery wasn’t guaranteed, why on earth would I want to make my days muddy and distorted by alcohol?

This morning, I went to the grocery store. I go almost every morning to get something Lynne and I have decided we need. Little Debbie cakes spring immediately to mind. Or flowers. I know the experts say that’s the wrong way to shop for food. I know going shopping every day means I’ll make more impulse purchases than I should. I don’t care.

This morning when I was shopping I got a couple of pounds of coffee, on sale. I grabbed a box of generic imitation sweetener for my wife and a loaf of fresh Cuban bread. I bought some Irish butter. It’s so creamy it’s worth the extra money.

After I put the butter in my cart, I walked through the produce section. In an open refrigerator display I saw little plastic boxes of strawberries, blueberries, even sliced mango and apple slices with caramel sauce for dipping.I’ve eaten all those things. My mother used to make the best caramel apples in the world, I think. And strawberry shortcake.

Suddenly, I saw a display of ripe dates. Now, I’ve never tasted a date. I don’t know why. As a consequence, in my mind dates are shrouded in mystery. Perhaps because they sound Biblical. Though dates are not mentioned by name in the Bible, I think Noah carried a couple of date palms, probably in his cabin on the Ark. He and his wife ate dates late at night while the rain fell and fell.

Anyway, this morning I decided I wanted to eat a date. I wanted to eat a date simply because I’d never eaten one before. So, with the connivance of a supermarket employee who has seen me every morning in the produce department, I did. She slipped me a date. And it was wonderful. Kind of like an apple made out of honey.

I’m glad I ate it.

If I’d been drinking, I wouldn’t have been in the grocery store. Hell, if I’d been drinking I wouldn't still be married. And I never would have the chance to taste a date.It sounds silly doesn’t it? Tasting that date is what makes it easy for me not to end my life in a bottle.

Monday, September 15, 2008

The taste of a date

Years ago, I had what could be called "a bit of a problem" with alcohol. It could also be called a "big, big problem." The problem was that I wanted to drink every day and once I started drinking I just couldn’t stop. It cost me a lot over the years in terms of losses I needn’t and shouldn’t go into here. What’s important is the fact that about 13 years ago, with the help of a fellowship of sober drunks, I finally got it. I quit. And I haven’t had a drink since then.

More than once since I was diagnosed a friend or acquaintance has asked how I’ve been able not to drink in the face of this cancer.

It’s funny. The idea of drinking hasn’t even entered my mind…at least not as a serious possibility. Why on earth would I want to make the time I have left miserable? Even if misery wasn’t guaranteed, why on earth would I want to make my days muddy and distorted by alcohol?

This morning, I went to the grocery store. I go almost every morning to get something Lynne and I have decided we need. Little Debbie cakes spring immediately to mind. Or flowers. I know the experts say that’s the wrong way to shop for food. I know going shopping every day means I’ll make more impulse purchases than I should. I don’t care.

This morning when I was shopping I got a couple of pounds of coffee, on sale. I grabbed a box of generic imitation sweetener for my wife and a loaf of fresh Cuban bread. I bought some Irish butter. It’s so creamy it’s worth the extra money. After I put the butter in my cart, I walked through the produce section. In an open refrigerator display I saw little plastic boxes of strawberries, blueberries, even sliced mango and apple slices with caramel sauce for dipping.

I’ve eaten all those things. My mother used to make the best caramel apples in the world, I think. And strawberry shortcake. Suddenly, I saw a display of ripe dates. Now, I’ve never tasted a date. I don’t know why. As a consequence, in my mind dates are shrouded in mystery. Perhaps because they sound Biblical. Though dates are not mentioned by name in the Bible, I think Noah carried a couple of date palms, probably in his cabin on the Ark. He and his wife ate dates late at night while the rain fell and fell.

Anyway, this morning I decided I wanted to eat a date. I wanted to eat a date simply because I’d never eaten one before. So, with the connivance of a supermarket employee who has seen me every morning in the produce department, I did. She slipped me a date. And it was wonderful. Kind of like an apple made out of honey.

I’m glad I ate it.

If I’d been drinking, I wouldn’t have been in the grocery store. Hell, if I’d been drinking I wouldn't still be married. And I never would have the chance to taste a date.

It sounds silly doesn’t it? Tasting that date is what makes it easy for me not to end my life in a bottle.

Friday, September 12, 2008

Pain

Every time I go to the VA hospital these days I’m asked to rate my pain from one to 10, with one being no pain and ten being a lot of pain. Most days I’m not in pain, so I just say "one" and the doctor or nurse who asked nods. When I’m in pain, I’m not sure what to answer. I’m not sure because I don’t know how bad pain has to be to get a "10" rating. Since I’m not sure how bad pain can get, I can’t even guess what a "4" rating is like, or a "6" or any other degree.

About eight years ago, when I was getting post-surgery chemotherapy for my colon cancer, I was hospitalized because of a particularly nasty chemo side effect. When I went to the ER, nobody asked how much pain I was in. I guess because I was moaning and groaning too much to answer. I would have said "10" because when that pain started, I figured it couldn't get any worse. When a nurse offered me morphine I almost licked his hand like a happy and thankful puppy.

Now, though, I’m not sure if that pain was worthy of the top rating. I think not. I think there’s pain a lot worse than that. And I’m not happy about that.

I’m in pain today. Not bad. I’d give this pain of mine today about a "two" rating.

I don’t like to tell my wife when I’m in pain like this. I figure if it doesn’t register on my face, it’s not worth bothering her. It’s not bad enough for me to go to the hospital, so there’s really nothing to be done, is there? And I don’t want to worry her. I also don’t want to have to keep telling her I’m okay every time she asks.

The only reason I bring it up is because I always think this pain is a hint of what’s down the road, some kind of message to keep me from feeling too sure of myself. And it works. Most times I’m sure I can take whatever lies ahead. Yo! take your best shot, cancer! Or, as someone famously said, "Bring it on!"

But then when I get these pains it reminds me that I really don’t know what number 10 pain is like. I have a feeling it’s going to be pretty bad. And that scares me. I’m thinking of asking my wife to leave me alone when the pain gets real bad. I don’t want her to have to experience it. But I guess that’s not fair, is it?

Anyway, I’m not going to tell her I’m in pain today. She won’t go on line until tomorrow or the next day, I think. She’s got too much to do. So by the time she reads this, if she does, the pain I’m in today will have passed so we’ll be able to forget about it. At least for now.

Thursday, September 11, 2008

You don't know me

It’s a terrible thing to say, but it’s true. Nobody truly knows me anymore. Not my friends, not men and women I’ve seen and had coffee and conversation with and shared fellowship meetings with for 13 years. Even the people I love the most – and who love me in return – don’t really know me any more. Neither my mother nor my wife. Not my brothers. Not Mark who loves me better than just about anybody else and not Jimmy who helped me get sober.

It’s not that these people, all of whom care about me, don’t wish to know about me, it’s just that knowing me, really knowing me, is impossible.

You see, the "me" they once loved is gone, replaced by a new me. This new me is different from the old me, very different. To be sure, I seem to be pretty much the same from the outside. I look the same, just a bit skinnier and with a bit less hair. I dress the same. My beliefs haven’t changed. I’m still a liberal and proud of it. I still love Law and Order and The Simpsons and can’t stand any reality show. I still love serenity and constancy in my life and hate conflict and uncertainty. And so on.

But I’m not the same person I was before the cancer arrived all unbidden to take up lodgings in my lungs.

I am not the same because my perceptions of the world and my place in it have shifted just slightly, the way an image can shift just a bit when reflected in window glass or seen in an imperfect mirror.

Of course the people who love me, who care for me, don’t know I’m not the same because there’s no way they could know. But when we’re together talking or laughing or hugging or whatever it is that we’re doing, everything from my end is colored just a bit, skewed just the slightest bit by this thing that’s growing inside me or, rather, by my knowledge of the thing that’s inside me.

It’s not that I’m always thinking about cancer or about death or about loss or gloom. I’m not. I have my moments, to be sure, but not that many. It’s not that. It’s more like the illness, the diagnosis and prognosis have put the thought of death in my mind, always just below the surface of my consciousness. And with the thought of death never very far beneath the surface I find that I detach myself a bit from everything I do so I can observe the closing of my. I do this, I think, becauseI truly believe that the way I die is important. Because I believe what I leave behind is important.

I wish I could better explain the change in me to the people who love me. I perceive it in myself, I know it’s there but I can’t explain it fully, not even to myself.

In face, words just seem to get in the way, to make understanding more difficult. As a consequence, the times I feel closest to the people I love and who love me is is when we’re together in silence or, and this is even better, when I’m alone thinking of those who care.

Monday, September 8, 2008

Go Irish!

I’ve been a Notre Dame football fan as long as I can remember.

I came by it honestly. My maternal grandmother, Delia Malloy from Mayo, was such a fan that when she was, herself, dying of cancer in 1943 she had my dad carry her from her bedroom into the living room where she could rest on the sofa and hear #1 Notre Dame play #2 Michigan in a game that determined the national champ. Notre Dame won, the story goes, she cheered weakly, and then died.

I like that story. I have a picture of my two brothers and me on my living room wall. We’re each wearing a Notre Dame letter sweater. Kevin is six, I’m four and my brother Pat is two. It’s the only picture I have of myself in which I think I look handsome.

When I was diagnosed with terminal cancer, I promised myself I wouldn’t die until I saw the Fighting Irish win another national championship.

I don’t know if I can make that promise stick but I sure hope I can.

Last year the Irish had their worst season ever. They won only three games. They lost to Navy for the first time in 43 years. My emotions were mixed. I was sad for the team and the school but I was kind of happy because I figured I had at least one more football season to go.

The Notre Dame Irish took to the field for the first time this year two days ago. They were playing San Diego State, a team they should have beaten without too much trouble. Things did not go so well during the first three quarters. The San Diego State Aztecs pushed the Irish around and looked like they were on the way to a big upset.

My wife went to church during the game and came home early in the fourth quarter.
She asked me how the game was going. She knows about my promise to myself not to die before ND wins it all.

I answered without thinking just as Notre Dame gave up the ball after a third-down run that didn’t pan out. "For this I stayed alive?" I said. "They look like bums."

My wife was shocked. Of course I was joking. Kind of.

In any case, the Irish came alive in the last quarter, scoring two touchdowns and winning the game by eight points. Then I felt pretty good. I felt good because, all joking aside, I do want to live long enough to see Notre Dame win big.

I guess I should be unnerved by every ND win. But I’m not. In fact, I feel pretty secure. That’s because I’ve also promised myself that I’m going to stay alive until the Chicago Cubs win the World Series. The last time that happened was 1908. So the odds of them both winning all the marbles any time soon seem pretty slim indeed.

I thank God I’m able to enjoy small things like football and jokes about the cancer. If I couldn’t laugh, who knows what I’d do?

When I was at the VA hospital the other day I walked past a young vet who almost certainly just returned from Iraq or Afghanistan. He was in a wheelchair being pushed down the hall by a nurse. He looked like he should have been a freshman at Notre Dame or at San Diego State or someplace. Instead, he was sitting in the chair, unable to hold his head up, leaning precariously to one side. Both legs of his sweatpants were folded around the stumps of his limbs.

After I watched the ND game, I remembered him. In an instant, I realized how unimportant Notre Dame football is and the Cubs, too. Immediately I remembered that even a guy with terminal cancer could have it worse. And though I may be wrong, I thought the young man in the wheel chair would be willing to change places with me in a heartbeat if he could just walk into a room, sit down and watch a football game.

Friday, September 5, 2008

When not knowing is best

I went to the VA early today. It wasn’t for anything serious, just to pick up some medicine I take to help fight fatigue.

The hospital is about fifteen miles from here. It’s a state-of-the-art hospital, as far as I’m concerned. I’ve been an inpatient there four times in the last two years and I’ve been treated much better there than I’ve been treated in a lot of other places I’ve been in my life. The people who work there are great, and I mean the doctors and nurses and aides and everybody else. Even the guy who walks around with a tiny little broom and dustpan picking up pieces of paper and dust bunnies smiles when he says hello.

Everything looks new. Well, at least they have had all the machines they’ve needed, so far, to give me tests and take pictures and stick me and prod me and everything else they do in hospitals.

I have to say, though, I’m a pretty good patient. I don’t like pain, so I’ve been known to whimper and even groan when circumstances require it. But I don’t complain about the food even when its broth and Jell-O and I don’t demand a lot of service from nurses because I don’t like too many people bothering me under any circumstances.

I also don’t ask a lot of questions. I know I’m supposed to. I know I should get second opinions and all that and I’ve even done some of that in the past. But right now I just don’t want to be reminded of what’s going on inside my body. I don’t want to hear about it and don’t want to talk about it. I had colon cancer about eight years ago and had surgery and chemo and that worked out okay. But during that period, I talked about my bowels and bowel movements in public for the first time ever. I even said the words "bowel movement" to a woman. Now, I have a pretty rough vocabulary. You can’t live the way I have and not gain a certain fondness for some terms. But no man should be forced to say the words "bowel movement" to a woman under any circumstances, with or without cancer.

With this new cancer I don’t have to talk about my bowels but I do have to talk about other things I’d rather keep to myself. You’ll have to guess what those things are.

Sometimes people, strangers or passing acquaintances, ask me what kind of cancer I have and I tell them lung cancer. That’s as far as I’ll go. But they want to know more. Is it squamus or adenocarcinoma? Is it small-cell or non-small-cell? What stage? How many tumors? Where? What drugs am I taking? I don’t answer. I don’t respond because what they really want to know, especially strangers, is when I’m going to die. They’re like people who slow down to gawk at auto accidents not because they’re interested but because they’re hoping to see something ghastly. Or at least something they can talk about later. Or something that will make them feel better.

I don’t want to know enough to give them that kind of information about myself. I don’t want them looking at me like a smashed up Honda or Chevy. Hell, I don’t want anybody to know that much about me, not even myself.

I truly don’t want to know when I’m going to die. Fortunately, the real world isn’t like the movies. At least my real world. In the movies, some doctor is always able to say, almost to the minute, how long the patient is going to live. My doctor has never told me my prognosis except in the most general terms, in terms of averages. I know enough to know that when he starts talking in specifics – weeks or days – I’m not going to have too long to worry about it. That works for me.

That works for me because I never need to be reminded that I’m sick and I know that if I know just when I’ll die I’ll have more knowledge than I really want.

Wednesday, September 3, 2008

Drug Dreams

I take a lot of medicine these days, even when I am, as now, between courses of chemotherapy.

I take sleeping pills because without them I have a tendency to wake in the middle of the night and then toss and turn in the darkness. I take two different types of anti-depressants for obvious reasons. I take medicine for my heart, medicine for my prostate and a medicine – it’s usually given to Attention Deficit Hyperactivity Disorder children – to help me battle fatigue. Of course I take vitamins. And, when I’m getting chemo, I take anti-nausea pills and steroids.

My doctors ask if the anti-depressants work and I have to say I don’t know. The only way I could find out is to stop taking them and see how depressed I get. I don’t really want to do that. The same with the medicine I use to fight my exhaustion. I seem to be a little perkier. I’m writing a few hours every day, which had become difficult before I started the new drug. Of course, it may be psychological. I don’t care.

There is, though, a side effect to one of these drugs, or maybe to some mix of drugs. And it's a side effect I’ve never read about or heard of. For the last month or so I’ve been having very vivid, very brief dreams, sometimes when I’m napping and sometimes if I go back to sleep after waking during the night. These dreams are so real that they wake me and when they do wake me I feel as if I’m actually in the situation I was dreaming about, no matter how goofy it is.

Wow.

Just the other day, for example, I dreamed I was talking on the phone to my sister in law, Jennifer, who lives in Richmond. When I woke, I hollered to my wife that she had to get to the phone, her sister was waiting to talk to her. After Lynne stopped doing what she was doing and answered the phone only to hear a dial tone, she wasn’t happy. I don’t blame her.

Once I dreamed that I’d lost an important book in my bed and I came awake to start stripping the bed frantically until I realized there was no lost book. I've come awake to answer a doorbell that hasn't rung and to express my anger to my wife for leaving me even though she hasn't.

Last night, I went to sleep wearing ear plugs to block the sound of the wind that often screams around our waterfront apartment when, like now, there’s a tropical storm nearby. The ear plugs are made of some substance you might get if you crossed wax and thick bubble gum, only not sticky. I jam them in my ears and push until they block the ear canal. They’re not very attractive, but who cares. They work.

About four o’clock this morning I dreamed I was eating a gum drop. I wasn’t. I woke to find one of the ear plugs in my mouth. Apparently it had fallen out and somehow turned itself, in my dream, into a piece of candy. I’m glad I didn’t try to gulp the whole thing, it might have killed me. As it was, it was just funny enough to make me laugh, after I spit the earplug out.

I guess I should tell one of my doctors or maybe all of them what’s going on. But I’m not going to. At least not yet. I don’t think I’ll sleepwalk and go for a drive or eat a frozen dinner or even a whole bunch of ear plugs. If I wake and find I’ve done something really goofy or dangerous, I’ll let the doctors know.

For now, it’s kind of interesting. And it’s great, for now, to know there’s a good chance that the next time I go to sleep, I’ll wake up and start laughing. It’s a nice way to wake.

I got a phone call yesterday from one of the radiology techs at the VA hospital. We scheduled my next chest cat scan for three weeks from now. The last one was pretty good. The main tumor had grown, but not much. If this one shows what we expect it to, more growth, I’ll be starting chemo again.

I’m not caging for sympathy, I’m really not. I’m just stating the truth. And the truth is that when I start chemo again, even though it keeps me alive, it’s going to be a bit harder to find reasons to wake with a laugh or a smile.

Monday, September 1, 2008

Denial

I was thinking today how lucky I am that I’ve been graced with a wonderful weapon I can use to ward off some of my life’s more fearsome realities or even some of its minor irritants.

I’m talking about denial.

Denial sometimes gets a bum rap. It’s treated like a rowdy, unwelcome guest at a church picnic. It’s talked about as if it’s some kind of a sneaky trick our mind plays on us to keep us from facing something we need to face or taking some action we need to take. And sometimes it is. It’s what keeps alcoholics drinking, most of them, until they die.

But sometimes denial is just what the doctor ordered. Sometimes it truly helps.

I, for one, love it.

Denial is what makes it possible for me to function, some days. It’s what convinces me, often, that I’m not really sick. It’s what makes it possible for me to go hours, sometimes, without thinking about the damn thing inside me that wants me dead. It makes it possible, as goofy as it is, to believe, sometimes, that I’m going to be okay. That somehow a miracle will happen or the oncologist will tell me there’s a new cure, guaranteed to work overnight.

Denial also helps my family and my friends. Denial is what makes it possible for them to smile when they see me, to talk about next year, the year after that, to talk to me as if there’s nothing wrong. This is what makes it possible for them not to feel fear or sorrow or loss. The other day, my mother – who is in the tenth decade of her life – said something about me going to Ireland to meet relatives I’ve never met. She said maybe I’d be able to do it next year.

I was cruel. I should have agreed and kept my mouth shut. But I can’t always do that. "Mom," I said, "do you not know what’s going on with me?" As soon as I said it, I wished I could somehow suck the words back into my mouth.

She was quiet for a minute. "Yes", she said. "I know exactly what’s going on with you. I just don’t want to think about it."

Denial is what lets her not think about it and for that it’s good and welcome. And I don’t think I really have the right to take that from her.

As for myself, I wish I could stay in denial all the time. That I didn’t know what’s going on with me. But I can’t. Usually, I’m snapped out of denial when someone well- meaning, like my mother, talks about making plans for a future I probably won’t enjoy. Or I’m brought back to reality when someone asks me how I am. The someone could be ringing up my purchases at the grocery store or a friend or even my wife. As soon as I hear the words, any denial I’m enjoying departs.

"I’m okay," I say, often. "I’m hanging in there." But sometimes I can’t say that. Sometimes I say I feel like crap because I have cancer. And if I’m really feeling lousy or if I’m angry or just sick of being sick, I tell the questioner the truth. "I’m dying," I say. "How’s it going for you?"