Twenty Months and Counting

One more day. Tomorrow is that day, as a matter of fact. When I was diagnosed back in December of 2005, the first prognosis I was given was 6 months. That was a shock. The next one was 12 months. Now, one of the first things we all learn as cancer patients is that prognoses really don't mean much. They are averages, they have nothing to do with individual cases. Nothing to do with us. So I made it past the 6-month point, and then the 12-month point.

But one of my doctors told me something else. It wasn't a prognosis, really. He said that for people who have what I have, Stage IV metastatic colon cancer, the average length of survival is 20 months. I remember asking, "Twenty months from when?" I thought maybe I could squeeze out another month or two, depending on when that clock started running. The answer was, 20 months from diagnosis.

Well, July is my twentieth month. If I make it to tomorrow, I'll have beaten the average. Twenty months and one day. I'm going to be driving very carefully today. I mean, if I got hit by a bus or something today, that would be pretty ironic. And no one really wants to die of irony. To be totally honest, I was diagnosed on Dec. 7th, so maybe I really need to make it to August 8th. But I'm choosing not to be that literal.

There have been plenty of days over the last 20 months when I didn't think I would make it. We've all had days like that. But most of the time, I believed that limit didn't apply to me. So now, I guess, at least as far as the averages go, I'm heading into uncharted territory. Will I make another 20 months? Who knows? None of us, with cancer or without, know how much time we're going to have. But I don't have a target anymore, a finish line, or I guess more accurately, a waypoint or checkpoint to pass on this road.

There is one decision I need to make. Long before I was diagnosed, I started wearing a bracelet that, by coincidence, has 20 beads. When I realized that, I wore it almost every day, using it to remind me of what I had been told. So now what do I do with it? Have I used up its good luck? Should I keep wearing it to start a new 20-month calendar? This is important, because I've been told that it's the accessories that make the outfit, and who am I to argue with the laws of fashion?

Leroy Sievers

7:19 AM ET | 07-31-2007 | permalink | comments (80) | e-mail post

Time Heals Tortured Land and Broken Soul

The following essay is from the NPR My Cancer weekly podcast:

I've been thinking a lot about Rwanda. I'm not sure why. Covering the holocaust there and in neighboring Zaire back in 1994 was one of the pivotal experiences of my life. And not in a good way.

There's no way to adequately convey the horror and sheer madness that occurred there. I don't know how many people I saw die. I remember the woman who was standing next to me who fell over dead. The little boy who died at my feet while we looked in each others' eyes. For years afterward, he used to come for me every night. Now, 13 years later, his visits are less frequent. There was one place that the journalists called "Camp Cholera." It wasn't a camp really, just a huge field of sharp lava rocks. More than 100 thousand people lay down there to die. Truly the seventh circle of hell.

Two years ago, a few months before I was diagnosed, I went back to Zaire, now Congo. I went back to that field. That's what I've been thinking about. I always thought of that ground as being cursed. So many dead. So many tears soaked the earth that I didn't think it would ever recover. I thought the madness would contaminate every rock, every bush. Everything.

But I was wrong. Nature had taken back the field. What had once been bare rock was now covered with bushes, and, to my surprise, wildflowers. Where the air had once been filled with the low moaning of humanity, a sound unlike any other, there were now birds and moments of silence.

I have to admit that I cried. I cried the first time, too, but very different tears, for very different reasons. This time, much to my surprise, I found peace there. The land had been healed. Seeing that helped seal my soul, which had been ripped apart in that field.

So when the cancer begins to overwhelm me, when it brings on the sadness, the anger, the pain, I think back to those minutes of peace I found there. I know that some day, maybe someday soon, I, too, will find peace. And I hope just as that tortured land was healed, those who have shared this road with me will be healed, too.

Leroy Sievers

7:13 AM ET | 07-30-2007 | permalink | comments (61) | e-mail post

Cancer Is Not the Lesser of Evils

I was reading the current issue of People magazine. Yes, I'm a subscriber. One of the articles is about Ann Romney, wife of Republican presidential candidate Mitt Romney. She suffers from MS. I have to admit I don't know a lot about the disease, but I do know that it is painful and debilitating. I wasn't going to read the whole article, I was just sort of scanning the pages as I turned.

And sometimes your eye can catch on something. In describing her MS, Ann Romney said "I thought, 'Couldn't I just have cancer and die?'" Ahhhh. I don't even know where to begin. I could be angry and say that a statement like that is thoughtless. I could try to be sympathetic and say that, just as I don't know a lot about MS, she obviously knows very little about cancer.

I'm leaning towards "angry." Most of you, patients and caregivers, already know everything that I'm about to say. You've learned it through experience. But for Mrs. Romney and others, here goes.

Cancer does not bring a quick death. Cancer is painful and debilitating. Cancer wreaks havoc on the life of anyone who has it, and the lives of the people who care about them. Cancer twists the present and steals the future. Cancer hurts. It hurts so badly that sometimes you can barely stand it. Cancer is not something to be sought after. Cancer is not the lesser of evils. Cancer is the Beast, the Monster, the Murderer. I know there are diseases out there that are crueler than Cancer. I know there are those whose burdens are heavier than ours. But cancer is not an easy way out.

As I calm down, I realize that our knowledge has been bought at a high price. There is only one way to learn about cancer. I wish that our knowledge would ultimately die with us, that no one else would have to know what we know. But for the time being, that's not the way it is. So I guess I should give Mrs. Romney a break. She doesn't know any better, I guess. And I hope that she never has to learn more.

Leroy Sievers

7:05 AM ET | 07-27-2007 | permalink | comments (125) | e-mail post

'Are You OK?' Isn't an Easy Question

The other day I told a lie. Actually, I did it twice. I was getting together with some friends and the young son of one of them came up to me and said, "My dad says you have a blog, and it's because you have cancer." I answered that he was right on both of those.

I was pretty impressed that he said that to me, he was clearly used to talking to grown-ups. But then he turned back into a kid.

"But you're all right now, right?" he asked. And without hesitation, I said "yes." What else was I going to say? I wasn't going to explain about my tumors and what they're doing to my body. I couldn't talk about what all that meant long term. And I certainly wasn't going to start throwing around terms like "metastasize" and "prognosis."

Then he asked me again, this time with a little more urgency, with the concern that children can show in a way that breaks your heart, "But you're OK now, right?" I think I said, "Yes, for now.?" I'm not sure why I added the "for now," that seems sort of unnecessary, looking back. But that seemed to satisfy him.

I have no qualms about answering that way. I don't think any good would have come from the unvarnished truth. I actually save that for just a handful of people in my life. Why upset him? There will be plenty of time for him to learn about life, to learn that it contains sorrow as well as joy, to learn that bad things do happen to people. All that lies ahead of him. I wasn't going to be the person to start that part of his education. Life will take care of that.

For that moment at least, he was pretty sure that all was right in the world. And those moments are precious in anyone's life.

Leroy Sievers

7:13 AM ET | 07-26-2007 | permalink | comments (54) | e-mail post

Living for the Unexpected

So now that I'm done with Harry Potter, I'm at a bit of a loss. What should my next goal be? What should I look forward to? I was a big fan of the Indiana Jones movies. When I saw the first one, I was so blown away that I sat through it two times in succession. But I'm a little nervous about this next one. After all, Harrison Ford is getting a little old to play him. Any new TV series on the way that I can't wait to see? Not really. I've been a big fan of 24, but they'll have to win me back after last season.

Is there a book coming to equal Harry Potter? I don't know of any. So again, what's my goal? We've all known people who have been fighting a terminal illness and who have decided they want to survive long enough to enjoy their next birthday, next Christmas, next family milestone. And it's amazing that so many make it. I guess the mind really can do things that we still don't understand.

Now, don't get me wrong. I'm not saying I stayed alive just to read Harry Potter. If that were the case, I would have read much more slowly. But as I look into an uncertain future, I wonder if there is something out there -- a goal, a target -- that I should set for myself. And I realize there really isn't. Because what gives me so much joy in life, what I want to hold on to, is the fact that I have no idea what's waiting for me. It's the mystery, the adventure, the unknown.

Life with cancer can be so predictable in so many ways. We all pretty much know the routine by now. We know our way around the hospitals, we can throw various medical terms into our conversations with ease. We know the pain that is coming, or that we live with every day. But what makes up for all this are the unexpected pleasures that can happen at any time. As cancer has limited my life, has narrowed it in ways that I hate, I still live for the unexpected, big or small. So there's no date that I have circled on my calendar. I like leaving it blank. We all know there will come a day, sooner or later, when death comes to find us. But I hope that even on that day, I will wake up and say, "I wonder what's next?"

Leroy Sievers

7:00 AM ET | 07-25-2007 | permalink | comments (48) | e-mail post

The Joy of Reading -- and Finishing -- a Good Book

At the bottom of page 759, at about 2 a.m., I reached a milestone. I finished Harry Potter and the Deathly Hallows. Don't worry, I'm not going to say a word about how it ends, other than that the end, actually the whole book, is pretty near perfect. For those of you who haven't read any of the books -- and I admit I dismissed them as kids' books when they first came out -- you're missing something quite special. But believe me, start at the beginning. For those of you who have read the others, I recommend reading the previous one first, just to refresh your memory.

When I closed the cover, my eyes sort of bleary, I felt the pleasure that comes from reading a great book. I was sorry it was over. But I also remembered that more than a year ago, I had said that I hoped to live long enough to find out what happens to Harry. That may have seemed silly at the time. Surely there are more important things in life. But I was serious when I said it back then.

So, as I write this, I'm a little sleepy. I guess it's time for more coffee. I think maybe I ought to give all of you, oh, I don't know, two months to read the book, and then we can talk about it? I wish now that the book had been a little longer, just to prolong the enjoyment. Maybe she'll write another one, though I doubt it. But more than anything else, I'm taking one thing away from the book.

I made it.

Leroy Sievers

7:13 AM ET | 07-24-2007 | permalink | comments (60) | e-mail post

Cancer Doesn't Care Whether You Want to Go

The following essay is from the NPR My Cancer weekly podcast:

I'm a huge movie fan. As far as war movies go, Saving Private Ryan pretty much set the standard. Children of Men, an under-appreciated movie from last year, had some amazing battle scenes. When you're talking war movies though, there's really only one: Apocalypse Now.

The music. That movie changed the way Americans go to war. I don't think there's a pilot or soldier who flies in a helicopter who isn't humming that music to him- or herself. At the same time, I can't imagine any orchestras perform The Ride of the Valkyries these days. Everyone in the audience would be thinking about the movie.

But there's one other part of that amazing sequence that caught my eye. It probably only lasts for two or three seconds. When the helicopters are landing and the soldiers are jumping out, one young soldier looks at the camera and yells, "I'm not going!"

That became sort of a running joke for my fellow producers and me back when we used to cover various hotspots. Whenever we were assigned to go someplace that no one in their right mind would go, one of us would invariably say "I'm not going. I'm not going." Well we thought it was funny every time we said it.

These days I think of that line a little differently. I understand why that kid said that. It's just that my war is different. When I was first diagnosed with cancer, when the doctor looks at you and tells you that your old life is over, that you're about to enter a strange and terrifying new world, your brain is screaming, "I'm not going, I'm not going." You only have a few seconds to process the doctor's words, and then, whether you want to or not, you're going into Cancer World.

And at each fork in the cancer road, you scream those words to yourself, over and over again. Starting chemo? I'm not going. Brain surgery? I'm not going. Radiation, Radio Frequency Ablation, Cryoablation. Verterbroplasty? I'm not going, I'm not going, I'm not going.

Except that you know you are. Even though that next step is going to be scary, probably painful, you know that you're going to go. You don't really have a choice. In Apocalypse Now, another soldier runs back to the chopper and drags the kid out into the battle. The kid's instincts were right. Who would want to step off into the hell of combat? But I watch that scene and I think every time that the kid knows he's really going to go. It's just that for a few seconds, he wants to feel that he has some control over what's happening to him. That whether he gets out of the chopper or not really is up to him.

I feel the same way. Sometimes I try to fool myself into believing that I have some control over what happens to me too. But I know better. Even when you have a pretty good idea of how the battle's going to turn out, sometimes you have no choice. You get out of the helicopter and hope for the best.

Leroy Sievers

6:30 AM ET | 07-23-2007 | permalink | comments (84) | e-mail post

The Best Deal Ever

It's the little things that sneak up on you. I know the hard medical facts about my case. I know what's likely to happen. I have thought a lot about my own death. Those are all the big Cancer with a capital "C" things that we think about. And then there's the rest of my life. Cancer and mortality sort of hover in the background, of course, but I do get on with the things I have to do, that I want to do.

And then one of those little things jumps out and yells, "Gotcha!"

I love magazines. I know that you can get most of it online. But I love going out to the mailbox and finding a couple of new magazines. I know that I have an hour or two of entertainment coming up. So I was renewing my subscription to one the other day, and I came the point where I had to decide how long to renew for.

Did I want two years? The renewal card assured me that was a great deal. But three years? That was an even better deal. So which little box to check? And I stopped cold. Not because I couldn't decide which was the better deal. That was obvious. No, I had to wonder if I'll be here in two years. That would be a good deal. Or three years, that would be an even better deal.

None of us know when we're going to die. I think that if you spend a lot of time worrying about it, you're wasting some of that life that is so precious. So I checked the box for three years. I mean, what the heck, right? And besides, the card assured me that was the best deal ever. Who am I to argue?

Leroy Sievers

7:00 AM ET | 07-20-2007 | permalink | comments (76) | e-mail post

Leaving the Past Behind

This blog has truly been a learning experience for me, although some of what I've learned has been pretty esoteric. There was a bionic dog? What? Why? I'm not sure I even want to know the answer to that one. But everyone seemed to agree yesterday that the ' 70s were a disaster when it came to fashion. Music too, but we can save that for another time. What was everyone thinking? Mass psychosis? I guess at this point it's time to confess that I had a three-piece brown velvet suit back then. There, I said it. And when I wore it, I thought I looked hot. Luckily, there are no pictures. We all have tragedies in our pasts, that's one of mine.

I don't think about the past all that much. Before I was diagnosed, I would have thought that someone with cancer would spend a lot of time thinking back, thinking about regrets, lost opportunities, mistakes, and reliving the good parts. I don't think I spend more time thinking about the past than someone who isn't facing some sort of disease or challenge.

The sadness that I feel when I think about my cancer, and how it will most likely end, comes from a different direction. I'm looking forward. There's so much more to do, to see, to experience. It's the probable loss of that future that makes me sad sometimes. I hate the idea that my future may be cut short. I think everyone probably feels that way when they think about dying, whether they are 20 or 90. There's always more to do.

The past is done. For good or ill, it's what made all of us who we are. Sometimes I think to myself that, at age 52, I'm just starting to figure things out. It's all starting to make just a little bit of sense. And then I get cancer. But I try not to spend too much time thinking that way either. After all, there's still a lot to be done.

I'm sure that I had a really ugly shirt and tie to go with that suit. But since there are no pictures, you'll all just have to take my word for how good it all looked. I guess some things really are better left in the past. I never had platform shoes though. Honest.

Leroy Sievers

7:11 AM ET | 07-19-2007 | permalink | comments (54) | e-mail post

The Bionic Man: Better, Stronger, Healthier?

"We have the capability to make the world's first bionic man. ... Better than he was before. Better. Stronger. Faster." You probably have to be of a certain age to recognize those cheesy opening lines from the cheesy show The Six Million Dollar Man. I never really got into that show. And these days the bionic woman sells mattresses on latenight TV. I'm sure there's some sort of lesson there. NBC is bringing back The Bionic Woman this coming season. There's some sort of lesson there, too. The best part of the show, of course, was the bionic man doing everything in slow motion, which was supposed to show that he was super fast, especially when accompanied by a sort of "sproing" sound effect.

The opening lines of the show came back to me when I was thinking about my upcoming verterbroplasty, otherwise known as "the glue job." I'll have a cement spine in about three weeks. OK, that's not exactly true. I'll have one vertebra filled with glue, but it still sounds sort of bionic. Will it make me stronger? Will I be able to lift heavier things? Will I move in slow motion? Will I have to wear bad '70s clothes?

I have a titanium plate in my skull. I can feel the screws holding it in place. Every once in a while someone will ask to feel them. That's always a big hit at parties. I have a long scar on my abdomen from the first surgery back in 2001, and my colon is a little shorter than it used to be. I have a couple of scars on my chest where chest tubes were inserted when my lung collapsed a couple of times. I have three little bits of cinder in my left lung where the tumors were burned out by the RFA procedures. I'm about to have one of my ribs frozen to kill some cancer cells there. I have no idea what will be left behind after that procedure. And, of course, there are hundreds of spots where my veins were poked and stabbed over the last year and a half or so.

So when I add it all up, I feel like I've had as much work done as the bionic man. But the end result seems to be a little different. I'm not faster than I was before. I can't move in slow motion the way he did, and, unfortunately, my life isn't accompanied by a cheesy soundtrack. Am I better? Well, I'm still here, so the answer to that one has to be "yes." Am I stronger? Absolutely. Maybe not physically, but I am stronger. A helluva lot stronger than I ever knew.

Leroy Sievers

7:00 AM ET | 07-18-2007 | permalink | comments (36) | e-mail post

Moving Forward, Buying Time

Vertebroplasty. Not the easiest word to say, and not one that I had heard until recently. But, in about two weeks, I'm going to have one. For the last several weeks, I've been trying to figure out what to do about the tumors in my spine. In particular, the largest one that has weakened one vertebra to the point that my doctors are worried about a fracture. My doctors were pretty much unanimous in urging me to wait on radiating my spine. They didn't want to make things worse for me by trying a procedure that could, I guess, do as much harm as good.

So now I'm scheduling a vertebroplasty. What they do is inject hot glue or cement directly into the bone of the vertebra that has been compromised. The glue strengthens the bone so that it won't collapse. But wait, there's more! (I know, that sounded like a late-night infomercial but it seemed like the right line.)

The glue will at least partially seal in the tumor and cut off some of the veins that feed it. Hopefully that will hold it in place for a while. And there's still more. The glue is hot when it goes in and is expected to kill some of the cancer cells. This is done in one day; I don't think I even have to overnight in the hospital.

And there's one more benefit too. My doctors noticed that one of my vertebrae, one not affected by cancer, also shows some early signs of weakness and possible fracture. That's just from normal wear and tear. So while they're fixing the one with cancer, they'll fix this other one too. Who could resist a deal like that? It's actually pretty amazing that they can do this, and it should at least buy me some time.

I do wonder how they come up with these procedures though. Were they all sitting around one day and someone said, "I know, we'll just shoot some glue in, that should do it"? Whoever thought it up, I am grateful.

About the same time, I'll have one more radio-frequency ablation procedure to clean up my lung, and something else I hadn't heard of: cryoablation. They're going to freeze the part of my rib where the cancer cells have started to grow, in order to kill them.

That will still leave the four other tumors on my spine but we'll get to them later. Right now I'm glad that we're moving ahead, at least a little. And I'm glad that this is a written blog today so that I don't have to say "vertebroplasty" on the radio. I'm not sure I could get past that one.

Leroy Sievers

7:03 AM ET | 07-17-2007 | permalink | comments (71) | e-mail post

The Legacy of a Day Well Lived

The following essay is from the NPR My Cancer weekly podcast:

What if everyone just disappeared one day? That's the theme of a fascinating new book called The World Without Us. The author, Alan Weisman, talks about what would happen if all humans just... vanished. Pick your catastrophe -- disease, environmental, a religious event or space aliens, that's not the point. Weisman talks about how quickly nature would rid itself of our imprint. How quickly would our houses fall, our cities and roads? What would last the longest?

In our vanity, we have thought that the things we build, the marks we leave, will pretty much last forever. I doubt the Egyptians expected the pyramids to crumble any time soon. And our modern cities, the gleaming towers of glass and steel? No, we leave those for succeeding generations to see and remember us, for good or bad.

I've been thinking about this on a personal level. We're all going to die. We all know that. And so this applies to those suffering with cancer and those who will die in their sleep in their 90s. To those who will die instantly in an accident, and those who will lose their lives in a conflict that rages now, but in a few generations will be left to history students to study briefly and then forget.

When we're gone, how fast will we disappear? How long before time erases any trace that we were ever here? "Dust to dust" is not just a figure of speech, after all. We'll live on for a while in the memories of those we've touched. But over time, these, too, will fade along with our pictures.

I'm not talking about fame. It's of dubious value now, and certainly not worth much after we die. Who, besides a few contestants on Jeopardy, can name the builders of the pyramids? The Seven Wonders of the World have all but disappeared, to be replaced recently by a new list that just doesn't seem to fire the imagination the way the old one did. The bottom line -- it really doesn't matter what anyone says after we're gone. It would be nice if everyone said good things. But we won't be here to hear them.

Doctors told me I was supposed to die 13 months ago. Then seven months ago, and then, next month. They've been wrong every time. But at some point they're going to be right. So what matters is not what we leave behind. What matters is what we do now. Do we touch the lives of others? Do we make a difference? Do we earn our place for the brief time that we are here? I think all we can hope for, all we should strive for, is a day well lived. And then another, and another. What better legacy could there be?

Leroy Sievers

7:05 AM ET | 07-16-2007 | permalink | comments (76) | e-mail post

What Do We Do Now?

The other day, when I wrote about being told for the first time that I can't do specific things because of my cancer, Carol wrote in to say that I sounded dejected. Going back and reading the blog, I understand why she said that. But it's not exactly the way I was feeling, or the way I feel now. There's a sadness that comes with cancer. We all feel it and live with it every day. It also brings anger, fear, sometimes joy, knowledge certainly... the whole gamut of emotions.

I'm actually feeling something a little different these days. I'm confused. I'm not sure what's happening to me, and I'm not sure what to do about it. My doctors have told me repeatedly that my case is not following the normal pattern. And while I'm fine with being something of a medical curiosity, there are some practical problems that come with that. What do we do now? That's not a rhetorical question to be shouted out to the universe, it's a very serious practical question.

The tumors I have right now, at least the ones we know about, aren't life-threatening in and of themselves. But the trend isn't good, and there may come a point when I just have too much cancer for my body to handle. So do we wait to see what happens next? That's never really been my style. Do we start trying to deal with the tumors one at a time? That's what we had been doing. But as the tumors multiply, that may not be practical either. At some point soon, I'm going to have to make a decision. We'll have to pick the next step and move forward.

My confusion goes much deeper. We've talked a lot here about the "Why me?" question. That's not one that many cancer patients spend much time on. There's too much else to deal with. And of course, the other part of that question is, "Why not me?"

Sometimes I stop and take a long cold look at where I am right now and ask myself, "How did this happen? How did I end up here?" I know the basic answers -- genetics, and mostly just luck of the draw. Maybe "How did I get here?" is just a rhetorical question. Because I think the only real answer is to shake your head, laugh at the way the universe works, and just smile.

Leroy Sievers

7:00 AM ET | 07-13-2007 | permalink | comments (78) | e-mail post

Looking Away in Embarrassment

When I was in college, there was a professor, I believe he taught chemistry, who had been horribly burned in a lab accident. His face was disfigured, but that didn't stop him from leading a fairly normal life. I used to see him around campus, and I always admired his courage. I'm sure he was tempted sometimes to think it would be easier just to stay indoors and hide.

I worked in a pizza place back then. One night I was taking orders, and when I turned to the next customer, it was this professor. I know, much to my shame and regret, that I reacted visibly when I saw him. I felt terrible then. I still feel that way 30 years later. I'm sure it happened to him quite often, and I hated the fact that I was the latest in what was probably a long line of people who reacted insensitively to his appearance.

Well, I did it again. I was in a bookstore the other day, and I saw two small children, their grandmother, and then their mother. She was bald, clearly from chemotherapy. She wasn't wearing a scarf or anything. She was just going about her life, which on that day meant trying to control her kids who were in something of a frenzy. She had that look of fatigue parents get when the kids are going crazy and calming them down seems to be an impossible dream. And I'm sure the chemo multiplied that fatigue a hundred times.

While I was watching her, she looked over at me and our eyes met. In spite of myself, I looked away immediately. I'm sure my reaction was one that she was familiar with. Someone was staring at her, and then looked away in embarrassment when they got caught. I hated to be one of those people. I seriously thought about going up to her to say something. Maybe I was overreacting, maybe she hadn't seen my reaction, maybe she didn't care. But I did.

I didn't go up to her. I stayed in line, and she went off with her kids. I'm not sure if I should have said something to her. But I knew in that instant what I would have said. Just two words. "Me, too."

Leroy Sievers

7:00 AM ET | 07-12-2007 | permalink | comments (81) | e-mail post

The Beginning of a Long Decline?

I've never done well with limits or rules. Anyone who knows me knows that I don't deal with authority all that well, either. Tell me I can't do something, and that's exactly what I'll want to do. Even when I really don't. It's not the act in question -- it's the rules, the limits, the "can't." So far, I've been pretty lucky with my cancer. The chemo made me very sick -- so sick some days that I couldn't do much of anything. But I've really been able to do anything I wanted, as long as I felt up to it. That's all changed.

I have cancer in my spine. It's in the vertebrae, eating away at the bone. One vertebra in particular, known as T7, a term I use a lot in conversations these days, has been hit especially hard. The bone has been weakened. If the tumor continues to grown, it will continue to weaken until the vertebra may fracture. A pretty scary prospect.

So my doctors have told me that I have to be careful. No lifting heavy objects. No weight lifting. No back packs. Before I got sick, I did lift weights on a fairly regular basis. I hate the fact that I've lost a lot of muscle tone, but there's no easy way to build that back now. I haven't gone backpacking in years. Before the invasion of Iraq, I would go hiking with a 40-lb.pack to get myself in shape. It worked. As it turned out, we were embedded in a mechanized division and we drove all the way to Baghdad, but I was in shape. It's funny, I was thinking about doing the weighted pack thing again. But that's out of the question now.

I like roller coasters. I never really thought about those signs at the entrances, the ones that warn people with back problems that they shouldn't ride. How can they mean me now? How did that happen? I've been rear-ended in my car a couple of times. Each time I was stopped. I think about that sometimes when I watch someone come roaring up behind me at a signal. If it happens again, I assume the consequences could be bad.

So I'm having to come to grips with the idea that there are just some things I can't do anymore. Things I always took for granted. I don't like it. I don't like it at all. To be honest, I wasn't planning on riding a roller coaster wearing a 40-lb pack and carrying weights any time soon. I just don't like the idea that I couldn't, even if I wanted to. I think the reason this scares me is that it seems like the beginning of what could be a long decline. That list under "can't" will probably only get longer. I don't like it. I don't like it at all.

Leroy Sievers

7:00 AM ET | 07-11-2007 | permalink | comments (81) | e-mail post

Reality's Observable Differences

When I was in 8th grade, I walked into English class one afternoon. It was loud, everyone was getting settled when one student yelled something and another threw her books on the floor and walked out. There was instant chaos. Then the teacher told us all to write down what we had witnessed. Everyone had seen and heard things differently. Most of us had only a partial sense of what had gone on. It turned out the teacher had set it up with the other students for just that purpose -- to show us how unreliable a witness can be, how we could all see the same events but come away with completely different memories. It was a great lesson, and for the record, her name was Mrs. Clark and she was a great teacher.

Laurie Singer, my partner, was at the meeting with my new doctor last week. When she got home after a very long and stressful day, she wrote this:

Denial. How many of us are in it? Every time we have a consult with the doctors, with all the information, questions, answers, all of it, what really peeks through the conversation to me, is that Leroy is considered a Stage IV patient. Truth be told, the odds are pretty slim that he will beat this disease. That's what I hear between the breaths, between the explanations of why we should wait and react to cancer rather than jumping ahead and being proactive.

Then we discuss what we heard. Same room, same doctor, same time. He hears "your break is over, there's a lot to deal with here, you're feeling good, looking good, it's not going to get better than this so let's go with it."

I hear the same words, probably understand it the same way, but try to bend the conclusion to fit a happier ending, to at least prolong the life that I've shared for so many years. I'm not going to that other place, can't do it. Leroy's cancer is just going to have to wait. I wonder what stage the doctors call that?

I think that Mrs. Clark is probably smiling. But I think she left something out that day so long ago. She didn't teach us that hope can change the way we see and hear.

Leroy Sievers

7:31 AM ET | 07-10-2007 | permalink | comments (66) | e-mail post

About As Good As It's Going to Get

The following essay is from the NPR My Cancer weekly podcast:

I'm not a patient man. I can be patient, but I have to force myself. I've always believed that the sooner you deal with a problem, the faster you can move on to the next one. In the panic of that first day when I was diagnosed with cancer, I thought "Get them out of my body. Get them out now." Well, that's not the way it works. I've had to learn to wait. Wait for a treatment, wait for the results of a scan. Wait to see what the disease is going to do next.

Last week I met with the doctor who does a radiation procedure that we think might work for me. I had hoped he would tell me all I have to do is come in, lie on the table, let the machine do what it does, and the tumors will die. Or at least they'll be held in place. But nothing is ever as simple as we'd like it to be. Especially in Cancer World.

This doctor agreed with my doctors at Johns Hopkins. We should wait to see if the tumors are actually growing. Wait to see if they eat away enough of my spine to be a threat. Wait for symptoms. And by "symptoms," they mean pain.

There are risks with every procedure. You have to balance those risks with the expected outcome. But the risks change over time. As things get worse, a risk that seemed too great earlier may sound more reasonable. The doctor I saw last week kept saying I looked very healthy. His concern, and the concern of my other doctors, is that we not make things worse. If I'm feeling good now, why take the chance of serious side effects from the procedure? After all, as he and others have said, this is about as good as it's going to get for me in terms of my health. They didn't have to finish the thought. We all know that at some point, my health is going to start to decline as the cancer starts to make itself felt.

So what we'll probably end up doing is waiting. Another month, maybe two. Then another round of scans to see what the tumors are doing. And maybe we'll see something, good or bad, that will make deciding what to do a little easier. But one thing you learn early on, cancer is not a disease of stark blacks or whites. It's painted in grays.

I think the hardest thing is just not knowing what's going on inside me. I know the tumors are in there, doing their best to kill me. I know we've killed several of them. But we really have no idea what they're doing now. I'm very conscious of my back and spine, waiting for the slightest twinge of pain. Of course, I'm old enough that my back hurts anyway. But I'm pretty sure that if something really goes wrong with my spine, if one of the vertebra fractures, I'll know it.

So in the meantime, I guess, I'll just have to be patient. Really. I can do this. No problem. What time is it now?

Leroy Sievers

8:29 AM ET | 07- 9-2007 | permalink | comments (71) | e-mail post

A Life Reduced to Yes and No Answers

I had to fill out a lengthy health questionnaire for my meeting today with the new doctors. These are the doctors who do the new radiation procedure that I hope will work for me. They pretty much asked for my entire medical history. I used to breeze through forms like these. Lung problems? No. Heart problems? No. Kidney problems? No. Eye problems? No. No. No. No.

Until I get to the cancer section, or the previous surgery question, whichever comes first. These days, I find that there isn't enough room on the forms to answer these questions completely. Previous surgery? Yes. Colon surgery. Brain surgery. RFA on my lungs. Cancer? Yes. Colon. Brain. Lungs. Spine. Bones. Yes. Yes. Yes.

I've started to use shorthand too. When I was asked about where the cancer was, I would start a lengthy explanation, "It started with a tumor in my colon in 2001, and then in 2005 in the brain and lungs..." and so on. This time, I just put "multiple mets." They'll know what that means.

But it's still strange to put down so many "No's." I'm actually in pretty good health. Aside from the cancer, of course. They asked about pain. It's funny, my doctor told me to be aware of back pain because of the tumors on my spine. I told him that I'm 52, I have back pain. That's not what he meant, and that's not what the questionnaire meant either. I've never really had any symptoms from the cancer, aside from the slurring of my words when I had the brain tumor. All the pain, all the discomfort, came from the treatments.

Then came the psychology questions. "Are you generally satisfied with your life?" I wanted to say, "Yeah, except for that whole cancer thing." But that wasn't one of the options. It was yes or no, so I put yes. And that's true. I am. Except for that whole cancer thing, of course. Then they asked, "Do you feel severely depressed?" This time I answered, "No." The complete answer, "No, except when I think about the cancer, and what it has done to my life and the lives of the people I care about," wasn't one of the options. And that's true. I'm not depressed. Maybe they should have asked me if I get sad sometimes.

But all in all, reading my completed questionnaire, I seem to be in pretty good shape. Except for that whole cancer thing, of course.

Leroy Sievers

7:39 AM ET | 07- 6-2007 | permalink | comments (78) | e-mail post

Heavier Burdens Than Cancer

If I had gotten sick 10, 20, certainly 30 years ago, I probably wouldn't have survived this long. Medicine has made tremendous advances. I know that for most of us, those advances haven't gone far enough. But doctors are able to do things that their predecessors could only have dreamed of. And that doesn't just apply to cancer patients.

Military doctors are able to save soldiers whose wounds would have been fatal in any previous war. With luck, a wounded soldier in Iraq is in a hospital, maybe even on his or her way to Germany, within hours. The wounds they suffer are still horrifying. Loss of an arm or a leg, or in many cases, more than one limb. Traumatic brain injuries. But there have been great advances here too, artificial limbs that allow something approaching a normal life.

There are other wounds, too. Deeper, not as obvious. Psychological wounds. The traumatic effect of going through combat. In World War II, the Army discovered that most soldiers would suffer severe "combat fatigue" after 200 days in combat. Very few soldiers approached that number. Today, we send soldiers back for two or three tours, and the lengths of those tours are being extended. And in this war, almost every day is a day on the front lines. For the soldiers that suffer Post-Traumatic Stress Disorder, there are no new technological advances to ease the pain. A body can be repaired with technology, but that technology doesn't hold the nightmares at bay.

It's easy to recognize those who have been maimed by the war. See a younger man or woman who has lost a limb, and most people today will probably assume they were wounded in the war. It's not as easy to recognize those carrying the burden of PTSD. And while we remember today, and respect their sacrifice today, what about 10 years from now, or 20? I think this nation has a notoriously short attention span. My fear is that these men and women, who have sacrificed so much, will be forgotten.

So on this July 5th, with the flags coming down, the debris from the picnics being cleaned up, and a lot of people taking a long weekend, I just want to urge that we all stop and think and remember. Remember those from earlier wars who were not treated well. Those from this war who will need our help for decades to come. There are heavier burdens than cancer. We, of all people, should know that. We, of all people, can help.

Leroy Sievers

7:40 AM ET | 07- 5-2007 | permalink | comments (33) | e-mail post

Not the Average Patient?

I had just sat down at my computer. I wanted to go through the latest notes that you all had sent in before I started to write. My plan was to write about my visit tomorrow with new doctors, who have a new kind of radiation machine, called Novalis. It can focus the radiation so precisely that they can use it on the tumors in my spine without doing any harm to the surrounding tissue. At least that's the hope. Given that the alternative is to simply wait for the tumor to grow and cause my vertebra to fracture, I'm holding on tight to that hope.

And then I saw this note from Robert:

I think the problem with the blog is that it is not realistic for the average patient. Many of the treatments you receive are just not available to the average patient even with insurance. My wife once had a doctor tell her he wouldn't have discussed a treatment she had if she was on Medicare, because they wouldn't pay for it. Most cancer patients are struggling to pay for what limited options they have and can only dream of the trips and things some people use for an escape.

Hopefully the successes you have had will help let people know there are still options and the publicity will make them available to everyone.

He's right, of course. I have been very lucky. I'm being treated at one of the best hospitals in the country. My insurance has covered the procedures. I did have a couple of fights with them because they declared the Radio Frequency Ablation procedure "experimental" and refused to pay. The first time they did this I had already had the procedure. They approved it and then apparently changed their minds. After a flurry of phone calls, they agreed to pay. A couple of weeks later, we went through the same fight again, as if the first round had never happened. In the end, they agreed to pay again. These decisions are very often made by insurance company doctors who are not specialists in the procedures in question. My doctor who performed the RFA told me that once the insurance company doctor who refused to cover a cancer procedure was a gynecologist.

It is a travesty that patients are refused treatments that can save their lives, or at least make their lives a little easier, because of financial considerations. How can anyone even try to make that kind of judgment? To decide how much money should be spent to save a person's life? Like the old line goes, "Who made them God?" I won't even go into the whole issue of how much money the government wastes, and how many lives could be saved. That's just too easy.

We have to keep fighting this. I truly hope that from now on my insurance company will cover all RFA procedures. But I don't know if they will. Did they agree in my case just because I fought back? If nothing else, I think that if an insurance company denies needed coverage, it should be confronted. It's hard to get to a real person, to fight through the computer systems, but I think it's worth it. Even if they still deny coverage, at least someone should have to answer the questions, "How can you refuse to help me? How can you condemn me?" Maybe it will just make them uncomfortable for a few minutes. But that's a start.

Leroy Sievers

6:54 AM ET | 07- 4-2007 | permalink | comments (86) | e-mail post

Life Is Not Like a Disney Movie

Over the weekend, Liz wrote in to say that sometimes this blog can seem "overly optimistic." I've actually been sitting here thinking about that for a while. I generally sit down and write about what's on my mind at the time. When I'm done and I read over what I've written, sometimes it sounds to me that I am much stronger, and much more optimistic, than I really feel. Maybe I'm coping with all this better than I thought.

But I'm not sure that "optimistic" is the right word. I think we're all pretty realistic about our situations. We have to be. Cancer really doesn't let you kid yourself. It's not in our minds. We haven't made it up. A cure would be nice, but I'm not counting on it. I pretty much know what my outcome will be. The cancer is going to kill me at some point, although I have to admit that I'm still not clear on just how that might happen. So I'm not optimistic in the sense that I think this is all just going to go away and everything will be fine.

But I am determined. We're all fighting for time. Every procedure, every dose of radiation, every drop of poison that goes into our arms, every thing we do has one goal. Buying time. Holding off our deaths. Keeping us alive. And every day that we wake up, whether the chemo has made us so sick we can barely get out of bed, or the radiation has made our skin burn, every day we live is one more day that cancer can't have. As hard as it can be sometimes, every night when I go to bed I think that I'm going to get up in the morning and snatch another day out of the claws of the beast.

It's hard, it's depressing, it's scary. Sometimes it feels that we'll be crushed under the weight of all that we are carrying. But it's OK to have bad days. It's okay to feel those emotions. With or without cancer, every day is not like a Disney movie, with singing birds and frolicking animals. That would get pretty annoying, actually. I was flipping around the TV the other day and caught a few minutes of Jurassic Park. And one of the characters said, "Life will find a way." Granted, he was talking about dinosaurs who go out and eat the minor characters in the movie, but he's right nevertheless. I think that's what optimism really is. Believing that life really will find a way. That we'll find a way.

Leroy Sievers

7:14 AM ET | 07- 3-2007 | permalink | comments (74) | e-mail post

How to Tell a Local from a Visitor

The following essay is from the NPR My Cancer weekly podcast:

Newport Beach, California. 14th Street. That was our beach when I was in high school. I don't remember why we picked that particular spot. After all, the beach goes on for miles. But 14th Street was ours. We knew where to park, which was never easy. We knew the little stand that sold "strips," greasy fried tortilla chips with salsa that were an essential part of any day at the beach. We knew what time the surfers came in and the waves would be turned over to the body surfers. We considered ourselves locals, even though we all lived more than an hour away.

Some places take role of "local" more seriously than others. In Hawaii, there are some beaches where a tourist just can't go. It doesn't matter how inviting they look, how white the sand or how blue the waves. It's just not done. At any beach, really any place people gather, it's usually pretty easy to spot the locals. There's just something in the way they stand or talk, something that says, "This is ours. You're just guests."

The other day I was up at the hospital for some scans. I was waiting at the elevators to the parking garage with another couple. The woman had the telltale blue tape around her arm. She had just had an injection. She was the patient. They were reading the sign by the elevators that explains where to pay for parking. And they were totally confused.

The parking system really isn't that complicated, once you get the hang of it. But for a first time visitor, it can be a little confusing. Especially because the first time you visit the cancer building is terrifying. You're entering a new world of needles, drugs, side effects, serious illness. Everyone else seems to know exactly what their role is. The hospital staff goes about the job of trying to fix us. The patients know where to go. And they know a noon appointment may very well mean two o'clock.

I'm comfortable in that world now, too. I know a lot of the medical staff. Even if I'm not there for chemo, I usually drop by to say "hi" to the nurses. I know where in the building I can get a signal for my phone. I know where in the garage I can always find a space to park. I can walk through waiting rooms and pick out the patients.

I'm a local. So I explained to that couple by the garage elevators how the system worked, and I sent them off to the right place to pay. I'm sure that after more visits ... after the terror and panic wear off and they get down to the business of treating the disease ... they'll learn their way around, too. It won't be long before they're explaining how it works to the next new people they run into. But I have to say, being a local back on the14th Street beach was a whole lot more fun than this. You can't even get strips in the hospital cafeteria.

Leroy Sievers

8:24 AM ET | 07- 2-2007 | permalink | comments (52) | e-mail post