Lookin' Good

I’m between courses of chemotherapy right now. Of course, I’m not cured. My doctor at the Veterans Administration said I needed some time to rest up and recuperate before we start again with some new poison cocktail.

He’s a funny guy, my doctor. He’s kind of like "House" on television only with a potbelly and a great laugh. He tells me it’ll be good for me to take a "drug vacation." That’s what it’s known as in the world of oncology. Besides, he said, I’ll have plenty of time to be miserable later. I have a good idea what he means, but I’m not exactly sure. And I don’t really want to know. Not yet, anyway.

Meantime, he says, I’m doing as well as can be hoped. The main tumor, the one in my right lung, shrunk about 50% during my first course of chemo. The second course of chemo didn’t shrink it but did keep it from growing. Now it’s regained some of its appetite, but it’s still only about 20% larger than it was when I was first diagnosed. The other three tumors are pretty much unchanged. There are some spots on my liver, but for now they’re tiny.

"You really look good," a friend of mine told me a few days ago. "Wow, you look pretty healthy," another friend said. My wife tells me I look handsome, but that’s kind of her job, right?

You know, though, when I look in the mirror I see that, in fact, I do look pretty healthy. My hair has grown back except for my bald spot. My mustache isn’t as thick as it was, but it’s not stringy. I’ve lost some weight but since I’ve always been thin, it’s okay. My color is good. In fact, sometimes when I step our of the shower and catch a glimpse of myself in the mirror, I look pretty normal. Except for the chemotherapy port in my chest and the purple blotches on my hands and my arms where I’ve bumped up against a door or a wall or just brushed against something hard.

Sometimes, looking at myself, I forget my diagnosis. And that’s wonderful when it happens. But it doesn’t last. Always, without fail, I’ll think about taking a trip or writing a new book or sailing one more time down to the Keys or doing something six months from now or next year and then it hits me.

Who am I kidding?

Don’t get me wrong. I’m not complaining. I’m glad I look good, that I’m not bald, that I’m not as skinny as I will eventually be. But it’s terrible to have to question every hope I have or dream I dream or plan I make for any time more than a few days or weeks from now. It’s really terrible when my wife talks about going to St. Augustine in the fall or about where we’ll spend Christmas, to nod, to smile, to agree, and then to think, ‘we’ll see.’

Sometimes, usually when I’m not feeling so good, I blurt that out. "We’ll see, Honey," I say. "We’ll have to see, won’t we?" And what I see is the pain in her eyes, the fear, and I realize how unfair that is to her, even though it’s true.

Maybe if I looked worse, less healthy, bald and emaciated, it would be easier, on me and on her.

The Language of Cancer

I recently spent an evening with one of my best friends, a great guy who’s near the end of a battle with pancreatic cancer. We’ve known each other for almost a decade, grown close enough to say we love each other without any of the throat clearing or lack of eye contact that so often accompanies those words when said by two men. I consider him – his name is Kevin – one of the best men I’ve ever known. It was special to us both that he was able to come down to South Florida from Georgia so we could hang out together.

It was a great evening. We went to a baseball game between the Florida Marlins (his team) and the Chicago Cubs (mine) and though the Cubbies lost, we had a wonderful time. We watched the game, of course, and we ate hot dogs neither of us could really handle and we laughed a bit the way old friends should, at each other and things we shared. We talked, the two of us, how this disease has touched our wives and his young children and how we both wish things were different but just have to accept the truth. Of course, we got a little maudlin but that’s our right, I think. We also said "dammit" a lot and I think that’s our right, too.

Near the end of the evening we talked about the special language we share, along with other men and women who are facing terminal cancer. How when we say "goodbye" it sounds so final even when it isn’t because it has such a good chance of being just that, of being final.

Dammit.

How when we talk about being tired we’re talking about a tiredness that transcends any tiredness we’d ever experienced before this illness. And how silly it sounds when some well-meaning friend or family member responds by talking about how tired they are because they didn’t sleep well the night before.

We talked about how we know the names of drugs we shouldn’t know the names of and of medical procedures and different cancer stages that we wished we didn’t have to know.

We talked, too, about the fear we know, a fear it seems we can’t share with loved ones just because it would be too cruel to share it with them.

And we talked about how insulting it is to me and to Kevin or to anybody else with cancer when someone, anyone, tells us to keep a good attitude as if we or little babies with leukemia or Ted Kennedy or anybody else with terminal cancer got it because our attitudes were bad.

Dammit. Of course a good attitude is healthier than a bad one. But don’t use that fact to beat me up or make me feel guilty if I feel down or depressed or just like saying "screw it." It’ll pass.

Saying goodbye to Kevin after that evening was one of the hardest things I’ve ever done. I fear I’ll never see him again. And then who will I talk with?

Why Write?

Why am I doing this? That’s a question a friend asked me this morning.

Well, I’m not really sure. I know I was inspired partly by Leroy Sievers, the onetime producer of Ted Koppel’s television show, journalist and blogger (MyCancer) who died not long ago. Not that I could be Leroy Sievers or take his place or somehow replicate his work but, rather, that I’d like to follow his lead. Maybe, like him, I could speak to and for people facing terminal cancer and to their loved ones.

I hope I can.

Another reason why I’m doing this is that "this" is what I do. It's what I’ve done my whole life. I’m a writer. I’m a writer who has cancer. So I’ll write. About my life and its joys and struggles and about my wife, Lynne, and my mom and brothers and friends. From time to time, but not often, I’ll write about what it’s like to be a cancer patient who happens also to be a sober alcoholic thanks to a recovery program I’m in. I think that’s relevant and also think maybe I’m a better person, maybe I do a better job of facing my cancer because of that program and what I’ve learned there.

I’m not sure what I’ll do with these words. I guess I’ll send them to a few friends and see what happens.

I do know I’d like to hear from other men and women with terminal cancer and their friends and loved ones. We share something. We share having to face death in a way that others can’t understand. And we shouldn’t have to face it without help from others who understand.

I plan to write as often as possible. I’ve no set schedule. Right now, I’m between courses of chemo so I feel pretty good except for the exhaustion that just won’t go away. But I don’t know for sure when the treatments will start again. And when they do, when I’m back to sitting in a room with my feet up and a needle in a port in my chest, I don’t know how often I’ll be up to writing.

So contact me, if you feel like it. And then we’ll see what happens.

About two-and-a-half years ago, I was told I have inoperable, stage-three lung cancer. At the time I was advised that patients like me usually last about two years, so I’ve already outlived my prognosis. During this time, I’ve tried not to focus all my attention on the disease that’s going to end my life. Don’t get me wrong, I’m not by nature a very upbeat kind of guy. But I refuse to live what’s left of my life in my grave.

Like other people, I wondered, often, what I would do if I got a death sentence? Now, I’m learning. And make no mistake, that’s what this is. The doctors can keep me alive for awhile and except for the tiredness and the nausea from chomotherapy my life isn’t bad, yet. But, hey, it’s coming to an end. And it’s ending no matter how much I rely on the good-old American belief that all problems can be solved with a can-do attitude and a cheery outlook and a touch of Yankee know how. If that was all it took to survive cancer, chemotherapy centers and radiation centers and cancer wards could be used to house the homeless. No, this is a reality I can’t be outrun. Short of an honest to God miracle, terminal cancer is final. But I refuse to think about that. I refuse because I believe the way I die is more important than my death. Believe me, I’m frightened sometimes, and angry, and worried about what will happen to my wife, or all the other things you might imagine, but I’m not going to give up. I’m not going to let the cancer beat me until I can just fight no more. If I feel strong enough or healthy enough to, heaven help me, make love with my wife or maybe go sailing one last time or lose myself in Pavarotti’s "Nessun Dorma" a few more times or get to watch another season of Notre Dame football, I want to be able to enjoy it.

I’m really not brave. Sometimes I wake in the middle of the night, in the dark, and I can’t breathe from the sudden fear. I’m afraid that when I’m dying I’ll turn into a weeping mass of pleading humanity. I’ve been promised that I’ll get pain-killers and that’ll be kind of nice, I think. I like the idea of taking morphine without having to worry about becoming addicted…hell, that’ll be off the table, won’t it?

It helps that I know just how blessed I am. I'm a sober alcoholic, sober for a little more than 13 years. I was what's known as a low-bottom alky: one of those guys you see lurking under bridges or in alleys, the kind of guy who cleaned the gin-mill toilet for a couple of beers and who followed his thirst to places I never thought I'd end up. Now I'm sober and though I'm deadly sick I'm able to treasure every day.

I wish I could live longer. But I can't. And then I remember what I thought when my oncologist looked over the top of his glasses and told me I had terminal cancer. I remember thinking, Man, I’ve had a hell of a ride. A lot of pain, but it was worth it.