The Waiting Game That Is Cancer

It's funny how our frame of reference can change without us even realizing it. I had to go up for another scan of my spine yesterday. This is a follow-up to the scans I had a few weeks ago. If I have to have spinal surgery some time soon, the surgeons want a better look at my spine. Now, a CT scan is the easiest of the scans. And this time, I didn't have to have any contrast dye. That meant no injection, and it also meant I didn't have to drink that vile combination of raspberry and dye. Seriously, if anyone from the hospital is reading this, you have to come up with a better flavor.

Even better, I could eat and drink in the morning, which meant that I could have my coffee on the drive up. That makes me much more fun to be around. So all in all, it was an easy day as hospital days go. I'm not really worried about the results, either. I don't expect them to be substantially different from what we saw a few weeks ago. Granted, that wasn't good, but I don't think it can get much worse.

I still haven't heard back about that new radiation procedure yet. I don't know whether the doctors that do the treatment have reviewed my case yet or not. I'm assuming that if they had made a decision, I would have heard about it by now. So I'm just waiting to hear, along with my doctors.

A while back, I probably would have been something of a nervous wreck by now, wondering why I hadn't heard, reading all sorts of dire things into the delay. But I guess I've learned patience. I've learned that dealing with cancer is a long slow race, better suited to turtles than hares. I wish I could have had all the procedures the very first day I was diagnosed. I wish that scan results were instantaneous. I wish a lot of things. But that's just not the way it works in the world we live in. So I wait. If my doctors don't think some sort of cancer crisis is imminent, if they're not worried, then I'm not either.

But maybe the things I've learned, patience, acceptance, only apply to my cancer. After all, the next Harry Potter book is due out soon, and I am getting impatient about that. I worry that the secret of the ending will get out before I have a chance to read it. Now that's something to worry about.

Leroy Sievers

6:39 AM ET | 06-29-2007 | permalink | comments (69) | e-mail post

Looking Back on an Age of Innocence

I was wandering around my house this morning, looking for inspiration for today's blog. There's a very funny picture of me on a horse in Jordan, at the ancient city of Petra. For those of you who saw the last Indiana Jones movie, Petra is where the Holy Grail was hidden. It's the city where the buildings are literally carved out of the mountainside.

What's funny about the picture is that I'm sitting on the horse, and it's clearly too small for me. If I took my feet out of the stirrups, they would almost hit the ground. Horses in the Middle East are smaller, at least this one was. You have to ride about a mile down a narrow canyon to get to the ruins, just like in the movie. When I got on the horse, it kind of sagged under my weight. I felt really guilty about making the horse's day even worse than usual, and during the whole ride, I was trying to somehow rise up in the saddle, to somehow be a little lighter. It didn't work. This picture ended up as a Christmas card that year, "Merry Christmas from me and the horse I rode in on." Well, I thought it was funny.

 

But something else struck me about the picture. It was taken back in 1990. Saddam Hussein had just invaded Kuwait a few weeks earlier. I had just come out from a couple of weeks in Baghdad, and stopped off in Jordan to relax for a day or two before heading home. A couple of months later, I would be back in the desert when the war actually started. But on this day, on my poor suffering horse, I was smiling for the camera.

I had a lot on my mind back then. Job issues, career issues, we all knew war was coming. But I look at that picture, and to my eyes, I look innocent. Back then I had already spent a couple of years in the war zones of Central and South America. I had seen my share of tragedy. I was working at CBS News then, and it was in the middle of an upheaval, having been taken over by a man who neither appreciated nor cared about journalists and journalism. But I was young enough, and cocky enough, to think that I was ready for anything.

I was wrong, of course. But back then, sitting on that poor horse, cancer just wasn't part of my world. If you had asked me then, the idea that cancer would attack me would have seemed ridiculous. It just wasn't going to happen. Not to me. And so frozen in that picture is a Leroy who was ready for anything. Except that I wasn't. I had no idea what was coming.

Leroy Sievers

7:17 AM ET | 06-28-2007 | permalink | comments (69) | e-mail post

Never a Day Off

A number of you have written in asking why I feel obligated to write this blog every day, or to suggest that I take a day off every now and then. In the year since we started this project, I've only missed one day. And that was because I was in the hospital and didn't have a computer. So why do it every day?

Well, the first answer is the easiest. It's my job. I've contracted to do it. Now, the folks at NPR have been very good about all this, and they have suggested the same thing: take a day off whenever I need to. I think the issue here isn't the actual act of writing it. Honestly, I enjoy that. No, what is hardest for me, and I think what those of you who wrote in were really talking about, is sitting down and dwelling on my cancer for some part of every day.

There are some days when it seems I deal with nothing but cancer. That was certainly true when I was on chemo, or when I spend the whole day at the hospital, or especially on days when I get bad news. It's harder on days that are pretty much normal. I think about my cancer every day, but sometimes I'm able to push it to the back of my mind. I have other things to deal with. On those days, when I'm writing the blog, I have to sit down and think about my cancer, and what I want to say. And when I have been lucky enough to push my cancer into the background, it's harder to bring it back up to the surface. Not harder actually, it's right there waiting to crowd out all my other thoughts. It's just that, sometimes it can be a little depressing.

But I don't want to take a break. I don't need a day off. After all, none of us gets a day off from the disease. And while I may be having a good day and not want to think about cancer, that may not be true for many of you. That's the real reason I write every day. I feel it's my responsibility. We're all in this together. There's something to be said every day. There are people who need our help, who need a kind word, even if it's electronic. We all have learned from this disease, and we need to share that.

So I truly appreciate it when some of you worry about me, or ask if I need to take time off. I just don't think I should. Wouldn't seem right to me.

Leroy Sievers

6:52 AM ET | 06-27-2007 | permalink | comments (79) | e-mail post

The Greatest Despair Is Thinking You're Alone

I take notes. Phone numbers, appointments, the usual stuff. But when I read the posts that you all send in, I write down phrases that grab my attention, that I want to write about later. Sometimes I forget about them and move on to other topics. I was going back through my notes today and found two phrases that I really like.

Liz wrote in a while back and said, "What happens to one of us, happens to all of us." It reminds me of a great old blues song, "How can any of us be free if one of us is in chains." The idea is the same, of course. We're all in this together. This certainly applies to Cancer World. On my good days, I still ache for those who are in pain. On my bad days, I know that all of you help me carry that burden. You do that for each other in your posts, and in your prayers.

And it goes without saying, that applies to the regular world, too. So many parents used to say, "Eat your vegetables, children in ... fill in the blank ... are starving." They generally stop saying that when kids start suggesting FedEx. But there is real truth there. We shouldn't sleep soundly when so many around the world are crying out. We shouldn't feel comfortable when so many at home go hungry. There is no despair deeper than thinking that you are alone. There is no greater comfort than knowing that others stand with you.

The other line, and it was just a phrase really, came from Kay. She talked about, "Moments that cancer cannot have." Cancer tries to eat up our lives while it eats away at our bodies. It can take over every conversation, every thought, every dream. But even on the worst days, we can hold onto moments that aren't about cancer. They may be fleeting, they may only last for seconds, but those are precious times. Times that remind us of who we are, and tell us again that we are not our disease. Reminders that life, our life, goes on.

There's a connection between these two thoughts. Those moments when we reach out to others, or feel the touch of others as they reach out to us, those moments are ours. The disease can't touch them. Those moments when we truly believe that what happens to one of us happens to all of us, that's when we are truly alive.

Leroy Sievers

6:49 AM ET | 06-26-2007 | permalink | comments (63) | e-mail post

The Toughest Kids on the Block

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

Don't give up. Keep fighting. Hang in there. One more time. We've all heard at least some of those. Probably said them to ourselves. Just keep going, one foot in front of the other. Even when each of those steps can bring pain unlike anything we ever imagined. But the human body is tough. I know, I've put mine through a lot, as have most of you.

I think the toughest part of this march isn't the physical act of taking that next step. It's mental. Finding the will to keep going, when your brain is screaming "enough." Sometimes it's "enough" pain. You just want it to stop. But most of the time, what I see in so many of the notes you send in, it's fatigue. It all gets so tiring.

It's all the appointments. It's trying to maintain as much of our normal lives as we can. It's the bombardment of bad news. It's the weight of our own thoughts and fears. Just carrying all that can be so exhausting. And it's a kind of exhaustion that no nap, no amount of sleep, can ever fix.

As I said recently, I have never run a marathon. Have no plans to. But I have to think that when you first start out, when you cross the starting line, knowing how far you have to go must add ten pounds to each foot.

So how do we keep going? How do we get up each day and face the drugs, or the radiation, or the surgeon's knife?

I guess it's just will, along with a bit of stubbornness. So many people say, "I don't know how you go through all that." "All that" is the disease, of course. But one of the things cancer has taught me is that I'm just tougher than I ever thought. And I thought I was pretty tough before. I could endure hardship, rough conditions, little or no bad food. I've been shot at, teargassed, shelled, beaten. But it took a year and a half of facing this disease to teach me what toughness really is.

Being tough doesn't mean you can beat up the other kids at recess. It means you can persevere, you can get knocked down and get back up again. Maybe a little bruised, maybe moving a little slower than you did before. A good friend of mine, a cameraman who has seen his share of bad times, used to say that sometimes you just have to take a beating. There's nothing you can do to avoid it, so you just absorb the body blows. And then you get up.

So as a group, we may not look it, especially on bad days. We may have lost weight, lost our hair, lost a step. But inside, we know we're some of the toughest kids on the block. We have to be.

Leroy Sievers

7:00 AM ET | 06-25-2007 | permalink | comments (63) | e-mail post

The Worst-Case Scenario?

I love a good mystery. Right now I'm reading Stalin's Ghost, the latest Arkady Renko novel by Martin Cruz Smith. I'm going to try to be vague here, in case some of you are planning to read it. One character is shot in the head, and the doctor says, "Because the trauma was a bullet, not a tumor, the recovery should be straightforward."

Wait a minute. I had a brain tumor, and that makes me the worst-case scenario? The guy should be happy he got shot in the head, instead of going through what I went through? His doctor's telling him he had a bullet in the brain was supposed to be better than what my doctors had to tell me? How did that happen?

Actually, that line made me laugh. I mean, how else can you react? I guess for most people, the people who live outside Cancer World, we are the worst-case scenarios. Every day, we live with something most people dread. It's like those stories your parents used to tell you. Eat your vegetables or some horrible monster will come and get you. I never quite figured out why certain monsters cared one way or the other about what I ate, but that's a whole different issue. In any case, whether we ate our vegetables or not, and I'm not trying to open the cancer/diet debate here either, the boogie man came and got us.

You see references like this all the time. The overall message, be glad that this hasn't happened to you. And who can argue with that? I wouldn't wish this ordeal on anyone. No one deserves this. I can think of a number of movies where the heroine finally finds love, and then gets cancer, and dies. It always seems to be the woman that dies, maybe that's an issue for another day, too. But this is meant to be tragic and unfair. The character is usually beautiful and in the prime of her life, until this happens.

Well, cancer is always tragic and unfair. There's never a good time to get it. It doesn't care whether you're a good person or bad, whether you've found love or not. It just comes for you. Maybe Martin Cruz Smith is right. A bullet wound probably is simpler than having a tumor. Bullet wounds don't usually come back. You probably don't have to worry that much about being shot in the head again. But as soon as I finish writing this, I'm going back to the book. It's just starting to get really good.

Leroy Sievers

7:03 AM ET | 06-22-2007 | permalink | comments (60) | e-mail post

The Importance of Having a Plan

I'll never forget the first television piece I ever produced. I was at CBS News. I'd been in the business for about five years, but always on the assignment desk. CBS wanted me to learn to produce. We shot the story, a very strange one about a woman accused of murder. She was suffering from multiple personality disorder, and her defense, or at least what her lawyers said, was that only one of the personalities had committed the crime, and it was unfair to lock up the others. Like I said, it was a little weird.

I was in the editing room, crashing the piece for that night. The door flew open and one of the Evening News senior producers, someone I knew well, blew into the room like the Tasmanian Devil in the cartoons. As best I remember it, he said something like, "Do you have a plan? A plan is key. As long as you have a plan you'll be OK... " I had no idea what he was talking about. So when he asked again if I had a plan, I just said, "Yes." My plan was to finish the piece and go home. But that apparently satisfied him and he blew out of the room.

I was reminded of that story when a number of you wrote in to say that you were pleased I was working on a plan to attack the tumors. Many of you said how important it is to have some sort of plan. I will feel better knowing if there's something we can do, or at least try to do. Once that happens, I pretty much put myself in the hands of the doctors and show up when they tell me.

The alternative, doing nothing, just waiting for something bad to happen and then reacting -- that's not for me at all. I think I'd go crazy, and probably make my doctors crazy too. With every back pain, I'd be asking, "Is this it? Is this it now? Really, I think this is it." That wouldn't be good for anyone.

I think we're just comforted by the idea that we're doing something. We've made decisions, we're moving forward, we're trying. Even if it doesn't work, at least we did something. Sometimes the appearance of motion is as good as real motion. So assuming the risks are reasonable, if it turns out that I am a good candidate for this radiation treatment, I'm pretty sure we'll go ahead with it. If not? Well, I guess we'll have to come up with another plan.

Leroy Sievers

7:00 AM ET | 06-21-2007 | permalink | comments (61) | e-mail post

Something Worth Waiting For

I'm in limbo. I got a bit of good news the other day. There may be a radiation procedure that could help me with the tumors on my spine. It is called Novalis. It's very precise; similar, I guess, to the Gamma Knife used on the brain. The idea is that it can be focused and directed tightly enough so that it could be used to attack the tumors without causing damage to my spinal cord. Will it kill the tumors? I don't know. But right now I'd settle for just holding them in place for a while if that's the best we could do.

It's still radiation though, and so it's a question of whether this procedure would be too much radiation for the parts of my spine that were dosed six months ago. That's a lot of questions, but also a bit of hope. The procedure is not done at Hopkins, so my records are being sent over to another hospital in Baltimore. They're going to look at all the scans and determine if I'm a candidate. I should find out in a couple of days. So I wait.

It's funny, the waiting isn't bothering me, at least not yet. I think it's because I know that if this works, it's just the beginning of a long run. First the radiation procedure. I don't know if they would do all the tumors, or just the biggest, most dangerous one. Then, probably a surgical procedure to repair, or at least try to strengthen, the vertebra that has been damaged by the cancer. If we take care of that one big tumor, there are still four more on my spine. And sort of lost in all the shuffle, that tiny spot in my lung that needs to be cleaned up. There's that little spot on one rib as well. So there's a lot of work to do.

But going through all of that, procedure after procedure, would at least make me feel that we are making progress. If my case is rejected, then what? There are some other things to try, or at least explore. The one thing that I don't think I could do right now is just stop and wait for something bad to happen. I don't have that kind of patience.

So for the next few days, I'll just deal with normal things. There's not much I can do about my cancer until I hear. I know it's in there. I know it's doing damage. I just hope that sooner or later, it's going to get what it deserves. That's worth waiting for.

Leroy Sievers

7:13 AM ET | 06-20-2007 | permalink | comments (58) | e-mail post

Everyone Has Their Own List

1,000 Places to See Before You Die. That's the title of a book sitting on my shelf. Now, I got that before I got sick, but obviously it became a little more meaningful after my diagnosis. There's an ad campaign for a credit card too, listing 25 things you need to do before you die.

Climbing Mt. Everest seems to appear on these lists a lot. Well, I'm not doing that one. I'm not wild about heights. Or frostbite. I've seen a couple of really good documentaries on it, though. I'm hoping that counts. There are some great places in that book, and some fun things on the lists in the ads. But those lists always make me feel like I'm running out of time. That somewhere a big clock is ticking down, the way it did during college exams when you knew there was no way you were going to finish in time.

I don't think of life as a race. I don't think I'll finish higher if I can cross more things off the list than someone else. It's not like comparing times in a marathon. That's another thing I have no interest in, running a marathon. But I can blame that one on bad knees. That, and the fact that I hate running.

I count myself fortunate for having been able to travel much of the world. I've been to the source of the Nile. I've seen the Pyramids and the Great Wall and Red Square. But those aren't the milestones in my life. There are other things on my list. I remember a little boy in Rwanda, and trying to answer the question he asked with his eyes. Sharing a cup of hot chocolate with some of the best people I know on a frigid morning in the Iraqi desert.

Laughing at something that's really funny. Coming up with just the right line at just the right time. Shedding tears for the right reasons. Sending flowers for no reason at all. Giving someone the perfect present. Seeing the joy in someone else's eyes when they give you the perfect present. Sharing a special meal, savoring a good glass of wine. Letting the sound of waves take you away.

We all have our own lists. We judge our lives in our own ways, have our own definitions of success. There are still a lot of things I want to do before I die, but not very many of them are on those other lists.

Leroy Sievers

7:02 AM ET | 06-19-2007 | permalink | comments (68) | e-mail post

Difficult Decisions in Uncharted Waters

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

If it weren't for bad luck, I'd have no luck at all. That saying has been attributed to a long list of people. I'd like to paraphrase it, and say, "If it weren't for bad choices, I'd have no choices at all." That's the situation I find myself in now, trying to decide what to do about the tumors on my spine. When I first found out about them two weeks ago, I wasn't particularly worried. I thought I'd just have radiation again, and that would be it. Compared to chemo, the radiation I had wasn't bad at all. Except it's never that easy.

Your spine can only take so much radiation. And it turns out I've had about three-quarters of the safe dosage. That doesn't leave much room for more. If I went ahead with it, my spinal cord could be damaged. All sorts of bad things could happen. So that's not much of a choice.

I could try chemo. But the drugs available to me would make me very sick. And there would only be about a twenty-five percent chance or less that they would be effective. And this is where it gets good. "Effective" means about another four or five months. So that's not much of a choice either.

We could watch and do nothing for a while. One of the tumors, the largest, would most likely cause the vertebrae to crack or collapse within months, rather than years. In that case, I can have surgery. In an extreme case, they would replace it with synthetic vertebrae. And while having a bionic spine may have been great on television, it doesn't sound like much fun. The risks of that surgery are very high as well. So that choice? Well, there's starting to be a pattern.

The best possibility may be a new type of very precise radiation, designed for just my type of situation. But it's still radiation. I don't know if it will be too much radiation. Killing the tumors, but causing all sorts of sensory or motor problems, wouldn't be much of a victory.

I'm in this dilemma because my case is not quite normal. We've been able to kill, or just about kill, the tumors in my body. Normally, spine tumors aren't a huge problem because patients that get them usually have so many other problems that the spine tumors are a secondary concern. That's not the case for me.

So once again I find myself in uncharted territory. I'm going to have to pick one of these options. I'm going to have to make a choice. "None of the above" isn't on the list.

Leroy Sievers

6:19 AM ET | 06-18-2007 | permalink | comments (109) | e-mail post

Uncertainty Is No Replacement for Suspense

I wrote a couple of days ago about how important I think it is to still have a little mystery in my life. Who doesn't like a little suspense? That's why we love horror movies. Will there be something awful behind the door that the stranded teenager is about to open in the abandoned cabin? Okay, bad example, because there's always something awful behind the door. You know what I mean. But suspense is different from uncertainty. I'm not such a big fan of that.

We all know the old cliche about death and taxes. When you think about it, there really isn't a lot that is certain in life. When it comes to cancer, I think we could all use a little more certainty. Maybe just once, or even twice, I'd like something about cancer to be black and white, yes or no. In the old Roman gladiator movies, the emperor either put his thumb up or down. He never sort of left it in the middle.

Will chemo work? Don't know. We do know that it will make you pretty sick. That is one bit of certainty that I'm sure we'd all give up. What about radiation? Not clear, it may work or it may not. Is the tumor dead? We'll have to wait and see over the next couple of months. Will it come back? That's the scary one. And we'll only know the answer to that if it does come back. Up to that point, all you can say is, "Not yet."

I've gotten over my initial shock of first realizing that what we do next, what course the treatment takes, is actually up to me. I always thought that the doctors knew exactly what to do. I guess I had been watching too much TV. Periodically, we all have to make decisions, sometimes life and death decisions. And we can never be certain of the outcome. Our bodies respond differently, our cancers respond differently, the averages may or may not apply. In the end, sometimes you just have to go with your gut. I don't second-guess my decisions. I don't think there's much point in that.

I realize this is a rant. There isn't going to be any more certainty or clarity. No one can tell me if I do A, then B will happen for sure. That's just the way this disease is, and the way life is, and we have to roll with it. I guess I just wish sometimes that the response wouldn't be, "Answer hazy, ask again later." I always hated getting that one.

Leroy Sievers

6:11 AM ET | 06-15-2007 | permalink | comments (55) | e-mail post

Just Another Day

It was just another day at the hospital, except that it wasn't quite the same. I had to go back to the chemo room as a patient again. But instead of the usual five-hour infusion, I only had to be hooked up to the machine for about 20 minutes. I was getting a drug that will strengthen my bones. And I talked with my nurse the whole time, so the minutes flew by.

Then it was off to the MRI. This was another one on my spine. I had a spine MRI about six weeks ago or so, and they read it as clean. But then the PET scan last week lit up, so this one is to get a more precise location on the tumors for radiation, or whatever treatment we decide on. It's still unclear if I can have radiation, or if we need to try something else.

As you all know, I'm a pretty big guy, and the MRI tube is relatively small, so it's a tight squeeze. So tight, that my right arm went to sleep. And I was in there for more than an hour. My doctor had warned me about changes in sensation in my arms and legs, because of the tumor threat to my spine. So I'm lying in the machine, wondering if that was starting? I knew better, of course, and it was fine as soon as I could move it. With nothing else to distract you, your mind can always find things to worry about.

But this isn't like any other scan day. I'm not worrying about the results, not counting the hours until I find out what's there. No, I already know what's there. There's no suspense, and there's no fear. So next up is a meeting with the doctors to try to figure out what we're going to do. I want to continue to be aggressive, continue to attack the tumors as soon as they show up, but not everyone may agree with that.

So all in all, just another day.

Leroy Sievers

6:30 AM ET | 06-14-2007 | permalink | comments (44) | e-mail post

Little Things That Turn the Day Around

I'm going back to the hospital today for an MRI. We know the cancer is there, this is to help pinpoint the locations for radiation. If I can have radiation. There is a real question as to whether I can get more radiation on the part of my spine that was radiated about six months ago. And I also have to go back to the chemo room. Not to visit my friends this time, but to get an infusion of a drug intended to strengthen my bones. It's funny, I drink almost a gallon of milk a day. It has to be skim, and it has to be ice cold. But that's actually down from many years ago, when I probably had a gallon and a half every day. Strong bones and healthy teeth. Who would have ever thought that I would have tumors eating away at my bones?

When I was on chemo, when I couldn't tolerate cold drinks for the first week or so of each cycle, it was tough to go without milk. How can you eat a cookie, or a brownie, or just about anything, without cold milk? I know that it's obvious, but I started thinking about the little things, the things that make us smile, the things that help us get through a day that is physically tough, or mentally, or both.

A chocolate chip cookie with milk. I think I've already covered that one. Ice cream, but I like the kind with all sorts of stuff in it, or on top of it, or both, if I can get away with that. I love jalapeno peppers, they remind you that you're alive. And what isn't better with melted cheese on it? I love a good mystery, or a book that takes me somewhere I've never been, and makes me feel at home there. I love the joy of discovering a new author, and realizing that he or she has written other books as well. I love most movies, and in this age of DVDs and DVRs and TIVO, I still love going to the theater and paying way too much for candy. All I ask of a movie is that it not be boring. And if stuff blows up, all the better. I love coffee. I actually drink iced mochas, which may or may not qualify as real coffee, and yes, I like the buzz too. Cuban coffee, the little shots known as liquid cocaine? Truly a gift from the gods.

I can go on and on. A great bottle of wine, or even a good one. A hot dog from one of the street carts in New York. A great slice of pizza. A good joke, a line I wish I'd thought of, a smile, a look, making someone else laugh. All of those can turn around a day. There is plenty of time to think about the big issues. My cancer, my prognosis, the treatments that are coming. I spend enough time thinking about the Beast. Sometimes, I just want to let something as simple as a good song take me away from all that, even if it's just for a minute or two.

Leroy Sievers

6:19 AM ET | 06-13-2007 | permalink | comments (61) | e-mail post

Cancer Takes Mystery Out of Life

I watched the finale of the TV series the Sopranos on Sunday, and I loved it. For those of you who didn't watch, mob boss Tony Soprano and his family were sitting down to dinner at a restaurant. The director did a great job of toying with the audience, making us think that violence and bloodshed were imminent, that Tony and his family would be killed. After all, that was one of the most likely endings, at least according to the countless blogs about the show. And then the screen just went black. Nothing. You had no idea what happened next, and that was the beauty of it.

You could imagine any kind of ending you wanted. Tony and his family were killed just a few seconds later. Or they ordered dinner, and had, for them, a normal night. Or anything in between. I thought it was brilliant. What happens next is a mystery that will never be solved.

Now I sit here trying to make sense of my latest news, and figure out where to go from here. It's a little depressing, and now I understand one of the reasons why. Cancer has taken away much of that mystery from my life. I liked not knowing where the adventure was going to take me. I didn't want to know what was going to happen next. I never ever look at the last page of a book ahead of time. I don't fast forward to see how a movie turns out. I wanted my future to be as wide as my imagination could make it. Thinking that the future was still to be formed, that there were a thousand different paths that could be taken, all that made me smile.

Instead, cancer has brought too much certainty. I have a pretty good idea of what the next two or three months will be like. And I can guess what will happen after that. I realize that the disease will just keep attacking me. There may be brief respites, like the one I just had, but I expect the assault to be unrelenting. I know what the procedures will be like, what the drugs feel like, how my body will react. I know too much. And like it or not, I have a pretty good idea of how this is all going to end.

So I guess that's why this latest news has made me a little sad. My life isn't like the Sopranos. Cancer, once again, is a spoilsport. It keeps telling me what's going to happen next. And I hate that.

Leroy Sievers

6:19 AM ET | 06-12-2007 | permalink | comments (65) | e-mail post

Life Is Never the Same

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

At the very top of the My Cancer Web site, there's a short paragraph, an introduction to the blog. I wrote it about a year ago, and quite honestly, I sort of forgot it was there. It starts this way:

"After that day, your life is never the same. That day is the day the doctor tells you, you have cancer."

I wrote that about six months after "that day" for me, and I got that part right. Your life never is the same. Mine certainly hasn't been. That moment of that day is still crystal clear for me. I can see the room in the hospital, see myself lying in the hospital bed wearing a gown that was too small. I can see my doctor sitting down and saying those words. His exact words were, "We found a mass in your brain." The conversation sort of went downhill from there.

But that sentence -- "Your life is never the same" -- only tells a fraction of the story. As a cancer patient, there are so many days that change the course of your life. Those changes usually aren't very smooth. They're more like those sharp turns on a roller coaster, the ones that whip your neck around. The first day of chemo? That's a huge change. I don't think your body ever quite recovers from those toxic drugs that are meant to save you.

It's the scan days that really determine the course of your life. There are several different types of scans: MRIs, CTs, PET scans. They all see things a little differently. But they all do the same thing. They search, they hunt. They try to peer into the dark corners of our bodies, looking for a threat.

All scan days are difficult. Waiting for the results is excruciating. A good scan day is like your birthday and Christmas rolled into one. A bad scan day sends your life careening off in another direction. And each time that happens, things seem to get worse. More tumors, more treatments. Last-ditch treatments. Untried treatments. More danger. Each time your life changes course like that, the world seems to close in on you a little more.

So yes, my life has not been the same since the day the doctor told me I have cancer. Last Wednesday, my doctor told me the scans had found new tumors. My life hasn't been the same since that day, either. I don't know how many of these changes are in my future. I keep thinking of that quote from Hunter Thompson. "Buy the ticket, take the ride." I have to admit, after being on this ride for a while, my stomach is a little queasy and my neck is getting sore. But I'm not ready to get off just yet.

Leroy Sievers

6:11 AM ET | 06-11-2007 | permalink | comments (68) | e-mail post

Back to Being a Cancer Patient

Everything looks the same. For that matter, I look the same. But in the last 24 hours, so much has changed. I guess I sort of knew all along. I used to have a trick for when I was about to go into a dangerous situation. I would visualize myself doing something after it was all over. I'd play that daydream in my head, over and over, until it seemed almost like a memory. And then I relaxed, because I knew it would be all right. I tried that yesterday, tried to imagine my doctor coming into the examination room and telling me I was clean. And I just couldn't do it. I couldn't get the image to stick.

So what really has changed? The tumors had apparently been there for a while. Weeks, months, it doesn't really matter. I don't feel any different. The only thing that has changed is that now I know the tumors are there. And that changes everything. It has certainly changed my plans for the next couple of months. More scans, radiation mapping, the actual radiation treatments, more tattoos. But I have to admit that no one is impressed by my tattoos, the small green dots on my chest used to aim the radiation. I'm afraid that more of those dots won't be any more impressive. In the short term, I have to get back into my role as a cancer patient. I have to get back into the business of trying to kill the tumors.

In the long term? That's what I've been thinking about for most of today. A lot of the future is still a mystery. Will the radiation work? And what will come after that? During my break over the last couple of months, I thought a lot about my professional future, about the things I still want to accomplish, about the adventures still to come. But now that picture has grown murkier, fogged by those bright white spots on yesterday's scans. How will the disease affect my future? Will it limit what I can do?

I guess the hardest part of all this has been to accept that I am what I've been for the last year and a half. A cancer patient. It's not just a question of words, of what I call myself. That blog I wrote a week or so ago seems a little silly to me now. I realize now that I will be dealing with this disease for the rest of my life. For a short time, I had the privilege of thinking that may not be true. But today I know better. So I guess it's time to get to work.

Leroy Sievers

6:11 AM ET | 06- 8-2007 | permalink | comments (118) | e-mail post

The Beast Won't Let Go

It's back. Actually that's not quite right, because it never left. It just hid for a couple of months. The news from my scans wasn't good. One of the tumors that we had killed on my spine has apparently grown back. There are three or four new ones on my spine, too, although they're pretty small. I also have a new tumor on one of my ribs. And we'll have to do some cleanup on one of the tumors in my lung, the RFA didn't quite get it all.

As I write this, I'm still trying to make sense of it all. Clearly my cancer has found that it likes the taste of my bones more than my lung. The tumors on my spine and rib can be attacked, and hopefully killed, with radiation. And the residual cancer in my lung isn't a surprise. We'll just do one more RFA procedure. So the next couple of weeks are going to be filled with more scans, more consultations, and then radiation, more scans, and so on. I'm back in the middle of it.

Obviously, this isn't the news that any of us were hoping for. And the long-term implications, if the cancer continues to attack my spine, aren't great. But I've been through stuff like this before. I think I'm sad for a different reason. These last couple of months, when we all thought I was clean, gave me a little taste of my old life, a normal life. Oh, I still knew I had cancer, still saw the doctors periodically, but I was starting to spend more time thinking about the future. I was starting to think about what I could do, what I could be. I was starting to dream.

Today's news doesn't put an end to all that. But I think it is a reminder, one that is crystal clear, that "a normal life" now means something very different for me. For all of us. Maybe the fact that I had a break, that I was able to start thinking ahead, has made today's news all the more painful.

I know what I have to do now. I know what's ahead of me. Hopefully, in two months or so, these new tumors will have been killed, and then I'll just have to wait to see what happens next. But I know now that the beast hasn't let go of me. Most likely, it never will. It's time to move ahead anyway. And I can't thank all of you enough for all the wonderful notes you sent in, wishing me good luck. Knowing that I am not going through this alone, that we are all walking together on this road, is a great comfort to me.

And I've been reminded again, when reality slaps you on the face, it hurts.

Leroy Sievers

6:30 AM ET | 06- 7-2007 | permalink | comments (169) | e-mail post

Bracing for Results on Scan Day

Today is scan day. There are some minor inconveniences. No coffee this morning, unfortunately. Otherwise, the scans themselves are easy. A couple of injections of dye, then you just lie on the table and get moved back and forth through the machine. I fall asleep a lot of the time. But obviously, like every time, there's a lot at stake.

There's only one question that needs to be answered. Are there new tumors? Or am I clean and can I relax for a couple of months until the next scan? I look at my body sometimes and wonder what the hell is going on inside it. I have no idea. You'd think you'd be able to tell if you have tumors, if something was attacking your body. But at least for the type of cancer I've had, there aren't any symptoms.

Luckily, I should have the results pretty quick, before I leave the hospital. That's a relief. I won't have to endure the excruciating wait until the next day -- that's something I don't think I'll ever get used to. After the scans, I'll meet with my doctors. If I'm clean, it will be more of a social call, a chance to catch up and share some relieved laughter about my status. If they find something, then the meetings will be very different. It will be time to strategize, figure out the next step, agree on a treatment plan. There will probably be a little less laughter.

I really have no idea how it's going to turn out. I've tried to listen to my body, but so far it's been silent. Not a clue. I feel pretty good these days, and I'm hoping that won't change. Mentally, I'm as ready as I'm going to be. I've given up trying to prepare myself, to find a way to soften any bad news. That never really works. This is just another point on the road.

There is one thing I'm looking forward to, though. I've heard of a new cheese steak place near Johns Hopkins. I look at it this way. If I'm clean, then I'll want to celebrate. I'll have earned that cheese steak. If they find new cancer, well, then I'm going to need to console myself, to drown my sorrows in grease and melted cheese. Either way, I win.

Leroy Sievers

5:01 AM ET | 06- 6-2007 | permalink | comments (94) | e-mail post

'My Cancer' Blog Marks First Birthday

It's hard to believe, but at the end of this month, the blog will be one year old. As I sit here now, it feels like this past year has flown by. But time heals a lot of things. Memories start to fade. It's possible to forget those hours in the chemo chair that felt like days, the days of feeling sick that seemed like weeks.

I realize that I have changed. A lot. My thinking about cancer is different. Cancer has lost some of its terror. I remember how panicked I was the first time I was told that there were tumors in my body. I wanted them out, that minute. Now, if the next scans find something, I'll be disappointed, but I won't panic. I know that there is time, that there are ways to attack them.

I went back and read the first blog entry. It was about denial, something that I think all cancer patients are familiar with. I found this passage:

I know it's in there. I know that, most likely, it will kill me. But that doesn't stop me from dreaming. I still think about things I'd like to be doing in ten years, five years, next year.

Well, now it is "next year." It wasn't all that certain that I would still be here for the end of the first year, but here I am. Have I done those things I was dreaming about the first time I sat down to write a blog? Honestly, I don't remember what those dreams were.

I do think about the future, every day. I don't know if any of those dreams will turn into reality, I don't know if I'll get the time. But I made it this far. And sitting here, right now, that feels like a victory.

Leroy Sievers

5:01 AM ET | 06- 5-2007 | permalink | comments (57) | e-mail post

Cleaning Out a Closet Full of Memories

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

I finally got rid of some things that had been hanging in the closet for a long time. Sixteen years, in fact. First to go was my chemical suit from Desert Storm. I don't know why I kept it all this time. I wore it through the burning oil fields in Kuwait when the rain came down black. It probably wasn't the healthiest thing to have in the house. Some of my old equipment went too, stuff I didn't even realize I'd kept. All bagged up and in the trash.

There's a lot of stuff I have kept. Desert camouflage from 1991 and 2003. Jungle camouflage from the late 80s. Body armor, too. My desert boots are in the hall closet. I doubt I'll ever wear them again. And the helmets from both Gulf wars are on a shelf in my office.

All these mementos of conflicts got me thinking about my more recent struggles. I looked around the house to see what I've kept. I still have one of those little breath machines, the ones where you breathe in the tube and try to keep the ball floating in the cylinder. Hanging in the corner are the long-deflated balloons that greeted me when I came home from the hospital after my first cancer surgery, back in 2001. They've been hanging there so long, I really don't see them anymore.

In the pantry, there are dozens of empty pill bottles. Each of the big ones represents a chemo round. Others held anti-nausea pills, pain killers, the whole pharmaceutical history of my disease. I'm not sure why I kept them, but I don't think I'll throw them out any time soon.

But that's about it. I didn't have special clothes to wear. No camouflage pattern that could hide me from the cancer. I certainly haven't kept any hospital gowns. They're not the kind of thing to wear around the house.

I realize why there isn't anything else... the cancer just took over my normal life. Outwardly, life went on as it did before, except that I was sick. There's nothing to remind me of those days when the chemo made me so sick I was basically useless. Nothing that would count as evidence of a life turned upside down. Nothing I could throw away in some act of ritual cleansing. No, it all says "normal." And it all says "cancer."

Leroy Sievers

6:45 AM ET | 06- 4-2007 | permalink | comments (42) | e-mail post

When Do I Stop Being a Cancer Patient?

This is one I've been wrestling with for a while. Do I still have cancer? As best we know, we've killed the tumors that we knew were there. Radiation got the ones on my spine, RFA the ones in my lung, and surgery and gamma knife got the one in my brain. So am I still a cancer patient? Do I still have the right to write this blog?

I guess we'll find out more next week. I am scheduled for a full round of scans. If there's anything in there, at least anything big enough to see, I'll find out then. In the meantime, I assume the cancer is still in there somewhere. The last time I had blood work, the marker was not at zero. In fact, it had gone up.

I'm trying to prepare myself mentally for next week. I'm trying to prepare myself for hearing bad news. But I know a whole lot more now than I did when this madness first began. If there are new tumors, they should be pretty small, and therefore much easier to deal with. And we have new tools to attack them, depending on where they might be. So I tell myself that if the news is bad, I'll still be able to handle it OK. I'm not sure I believe myself, though.

What about the larger question? What if the scans don't show anything? I'd certainly be happy, don't get me wrong. But what will that make me? I still refer to myself as a cancer patient. Will that be accurate? Or will I be a former patient? In temporary remission? Back in 2001, after my surgery, I believed that it was all over. I had cancer, and then I didn't. I don't feel that way now. I do believe that I will wrestle with this disease for the rest of my life.

But I'm stalling. I still haven't answered my original question. Am I still a cancer patient? Maybe the better question is, does it matter what I call myself? I think that once you have it, or had it, you are a cancer patient. I think that label sticks with you. That's still the way I think about myself. Now, maybe I'm just being silly. Maybe the results of the scan will clear it all up. If there are new tumors, then this question will be irrelevant. Maybe thinking about this is a luxury. I guess I'm just hoping that when I get the results next week, I can still ask myself that question. I have to admit, I'm a little scared.

Leroy Sievers

7:31 AM ET | 06- 1-2007 | permalink | comments (97) | e-mail post