Good News and a Trip to the Bakery

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

The phone rang about 9 on Friday morning. At least I thought it did. I was in the shower and didn't get to it in time. There was no message on the machine. Maybe I just imagined it. I was waiting for the call from my oncologist with the results of my brain scan. But 9 a.m. seemed too early for the results to be in. Did that mean good news? It was so clean it took them no time to read it? Or was it bad news, a new tumor so large it was obvious? Or was it just a wrong number?

For the previous 24 hours, I had been playing the usual games with myself, trying to get ready for bad news. This latest scan was especially important. There had been some controversy over the previous one. The initial read had been a new tumor. But after a more detailed look, my doctors said no tumor. Thursday's scan was supposed to settle the issue once and for all ... at least for now.

Finally, about 11 a.m., my oncologist called. I have to admit, my heart started racing. He's very good; he says hello and then gives me the answer. This time, everything was clean. He said he had made sure the radiologists were extra thorough, so there would be no confusion.

I think you get a little giddy when you get good news. At least I do.

When we finally hung up, I sort of deflated, let out a long breath and just sat there for a little while. One more hurdle crossed. I know I'm not completely in the clear. I'm not cured. I'm pretty certain there's cancer hiding somewhere in my body. But so far, we haven't found it.

When I was first diagnosed a year and a half ago, my doctors said they wanted to buy me time. As much time as they could. I think they've succeeded in that. Each clean scan means a little more time free from the disease. Time I never thought I'd have. So I think I may go out and treat myself to something. I mean, it's important to celebrate good news, right? Usually with something chocolate? Of course, I say the same thing about bad news, then I need a treat to make myself feel better.

But today, that treat is going to be extra sweet. Oh yeah, my next scan is already set: June 6. Probably a full-body scan. But there's lots of time between now and then. I'm heading to the bakery.

6:19 AM ET | 04-30-2007 | permalink

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More Determined Than Ever

I had the brain scan Thursday. As you all read this, I'm sitting next to the phone, trying not to stare at it. It will ring soon enough. Being scanned is the easy part. I'm just hoping that my doctors were ultimately right the last time, that there is no new tumor. But as I said last time, if there is one, we know what has to be done. So I guess it's just not as scary anymore.

After I was done with the MRI, I went by the chemo room to see my nurse, just to say hi. Plus she was supposed to have brought in a homemade cookie for me, which she did, and which was excellent. We were kidding around; I hadn't seen her in a while. Being back in the chemo area, but not being there for treatment, felt a little like going back to visit a place you used to work. I didn't recognize any of the patients from my time there, but I recognized the looks on their faces -- and on the faces of their loved ones in the waiting room.

They had no way of knowing who I was, of knowing that I had sat in those same chairs. For all they knew, I was a relative or co-worker or friend. I wanted to somehow let them know that I was one of them, but there was no way to do that. I wanted to give them some hope, to say that you never know what's going to happen. But I couldn't say any of that.

I also realized something else that I guess I already knew, but had never really acknowledged in my own mind. As I said above, you never know what's going to happen, but looking around that room again, I am more determined than ever to make sure that I never, ever, go back there again. Except to visit friends. And maybe pick up a cookie or two.

5:56 AM ET | 04-27-2007 | permalink

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The Interviews Were Going to Air After My Death

I've spent virtually my entire adult life working in television. I have convinced thousands -- maybe tens of thousands -- of people to allow cameras to come into their homes or offices, and then to allow us to ask them questions. And for all of those years, I have always hated being on TV myself. I was on Nightline a couple of times, to talk about a story I was covering. When we did a tribute to the soldiers who had died in Iraq and Nightline was engulfed in controversy, I had to do more interviews. But for most of those years, I was able to escape the cameras.

And now there's Ted Koppel's documentary on the Discovery Channel on May 6. And it's about me, and it's about this blog and really all of you, too. There are a couple of clips on the Web site, and watching them, I remembered exactly why I hate being on TV. First of all, it's a little disconcerting to see yourself that way. It turns out that I blink a lot. I didn't realize I did that.

But this isn't just about my vanity. The clips that are up are from February of last year, from the first interview that Ted and I did, about three months after I was diagnosed. And I'm different. It may not be obvious to anyone else, but I see it. I look at those clips and realize that when I was being filmed that day, I thought I was dying. Or more accurately, that I was going to die relatively soon. I had been given a couple of prognoses, most of them measured in months, not years.

The original idea behind the interviews was that they would be aired after my death. But I can tell that I'm scared. Or maybe I just remember being scared. Back then, it was all new. My hair was just growing back after being shaved for the brain surgery. I had just been on chemo a short time. Spinal tumors, radiation, gamma knife on the brain, radio frequency ablation, all of that was still to come. And I realize that I know so much more now. Not just about the nuts and bolts of having cancer, but about myself and my life.

I still have a couple of pictures of me as a baby. There is a series of three, all taken at the same time. I seem totally happy and somewhat fascinated by my feet. I look at those and think about everything that has happened since they were taken. I look at that interview and think about everything that has happened since that was shot. And all I can do is shake my head and smile.

6:18 AM ET | 04-26-2007 | permalink

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The Waiting

Time flies when you're waiting for your next scan. I don't think that's an expression that's ever really going to catch on. But it's true. It seems like it was only a week or so ago that I went through the brain tumor scare. Initial readings of my last brain MRI seemed to indicate that I had a new tumor on the site of the original one. The next day the doctors looked again, and decided it wasn't a new tumor after all. So we scheduled another scan to make sure.

Tomorrow I'll be heading back up to the hospital for another brain scan. The MRI's aren't bad. They're almost an hour long and loud. The magnets in the machine make very strange noises. The most exciting thing that happened was the time I kept my belt with a metal buckle on. The magnets are so powerful that my belt was literally being tugged upwards, bringing my pants along too, not an especially comfortable situation. I couldn't take it off while the machine was on, and we couldn't stop. It was actually sort of funny.

This scan should settle the brain issue, at least for now. But I'm not nervous yet. I've gotten to the point where I can actually doze off during the MRI, in spite of the noise. Afterwards, that's when the waiting and the nervousness begin. I probably won't hear anything until Friday. The doctors seemed pretty certain a month ago when they said there wasn't a tumor. But until I hear that again, I know I'll be worrying. You just can't help it.

So how do you get through that 24-hour wait? I'll do normal stuff. When I get home, I'll have the blog for Friday to write. I'm in the middle of a pretty good mystery; I'm hoping that will help. And I'll try, and fail, to keep myself from thinking about it. You hope for the best, but in spite of yourself, you always imagine the worst.

We've all been through this before. It's just one of the rituals that go with being a cancer patient. I'd like to say that after a while, after you've done it enough times, it gets easier. But that's not true. I don't think it ever gets easy.

12:01 AM ET | 04-25-2007 | permalink

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It's Not Who I Am, It's Something That Happened

Who am I? I think we first started asking that question back in college, when existential crises were considered cool. Granted, a lot of people were doing a lot of drugs back then, and that may explain some of it. But how do we identify ourselves? Who are the people we have become? Has "Cancer Patient" become our identities? I started thinking about this when Lori sent in this note.

We all have read the obituary notices of "courageous battles" lost, and wonder if someday that phrase will follow our name. Cancer doesn't deserve to be the most notable thing about my life, and I still laugh when remembering The Onion's headline "Man Loses Cowardly Fight Against Cancer."

I love the line from The Onion, but what really got me was the sentence before that: "Cancer doesn't deserve to be the most notable thing about my life." Boy, did she get that right. The first time I had cancer, I had the surgery and thought I was done. I never liked the term "survivor," because that wasn't my identity. I had a disease, it was treated, it was over. It wouldn't have appeared at all in my description of who I was.

Things have changed. Cancer took over my life in a way that I never could have imagined. In the same way that the tumors tried to take over my body, cancer took over parts of my identity, even when I tried to resist. In the eyes of loved ones and friends, I had cancer. That was usually the first thing they would ask about, and I can't blame them at all. That's natural.

It has taken over a big part of my professional life. This blog has become one of the highlights of my career as a journalist. As I think more and more about doing other projects, I have wondered how I would be identified. If I wrote about Iraq for instance, would they say, "Leroy Sievers, who has cancer, has some thoughts on Iraq?" Of course not, but you know what I mean.

In the end, I come back to the way I looked at cancer the first time. It's just something that happened to me. It's not who I am. But the things I have learned from it? They have become a huge part of who I am, and for that I'm grateful, as strange as that may sound.

I know that just about everyone who reads this has been touched by cancer in some way. I doubt that "cancer patient" will show up in very many answers, but I will put the question to all of you. Who are you?

9:19 AM ET | 04-24-2007 | permalink

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Return to Normalcy? Not Quite

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

Someone wrote in to the My Cancer blog last week saying they want to hear more about my transition to a normal life. When I was undergoing chemo, finding something to talk about was pretty easy. There was always some variation of, "I feel terrible; the drugs make me really, really sick; this is incredibly unpleasant." I could have written about that just about every day.

Then I stopped the chemo and I had the radio frequency ablation procedures. There was pain to talk about, certainly. When I got a collapsed lung, that was about the worst pain I've ever felt. Coughing, the chest tube -- no shortage of fun things to discuss.

Now, for the time being at least, I have less to talk about. Strangely, I'm still getting what I assume are delayed side effects either from radiation or the chemo. But they are more annoying than unpleasant. So now I face another challenge: becoming normal again.

I probably don't need to say this -- every cancer patient out there knows what I'm going to say -- but I'm going to say it anyway: I believe -- no, I know -- that this is not going to last forever. There are some indications that there's still cancer somewhere in my body. We just can't see it yet. One of these days, whether it's the next scan or the one after that, something is going to pop up and say, "Boo!"

I don't spend a lot of time worrying about that. I just sort of accept it. But it does color my thinking about how normal I can become. My body is a mess. The brain surgery, radiation, chemo, and chest tubes have all left their mark.

So my first step toward normalcy is to rebuild my body. I'm trying to lose weight. I'm working out again, trying to regain my strength. And I figure all of that will help if and when I face further treatment.

I've taken up old hobbies. Slowly, but surely, my drumming is improving. And I've broadened my horizons when it comes to looking for my next projects. The world is opening back up for me, at least a bit. I'm spending a little more money on myself, too: some new clothes, books that I fully intend to read, that kind of thing.

But normalcy? I'm not sure what that means anymore. If it means a return to what my life was like before I got cancer, well, I don't think that's really possible except in the most superficial ways. I'm different. I think my goal now is to build a better life, to put to use some of the lessons I've learned in this last year and a half. Besides, I think "normal" is overrated. Let's have some fun.

6:20 AM ET | 04-23-2007 | permalink

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No Death Is Meaningless

We have trouble understanding and accepting mass deaths. The toll at Virginia Tech is too high to comprehend. The word "massacre," and there is no other word for it, chills us all. The same with the toll in Iraq or Columbine or Oklahoma City. But we do accept deaths when they occur by themselves. I read today that 30,000 people die in gun violence every year, and yet, we don't talk about it much.

When I was first starting out in television, I worked on the news desk. One of my jobs was to call the local police departments every hour or so to see if anything was happening. There was a term the police used that I am ashamed to admit I adopted as well: "misdemeanor homicide." If I heard the code for a homicide on the police scanner, I'd call and they'd say, "Don't worry about it -- misdemeanor homicide." That meant the victim was maybe a drug dealer or user, or just someone nobody much cared about. That the victim was a minority was almost a certainty. In other words, a "meaningless death."

One of the duties of my next job at CBS News in New York was to check the wires for the overnight death toll. Crime was rampant in New York in those days, and there were two or three or six murders a night. At least it seemed like that. And no one cared. Unless, of course, they all happened together. Then it might be a story.

Why is it that single deaths don't move us? Why do we accept this level of violence as long as it happens in ones and twos? These deaths are no less tragic. The grief felt by the victim's loved ones is no less.

The toll from gun violence is horrendous. The toll on our highways is even higher. And the toll from cancer and other diseases, higher still. The fact that cancer deaths occur one by one is obvious, but the total is staggering. We have to do more. As I sit here so many years later, I am still ashamed that I used that term. And I am ashamed that it took me a while to learn that no death is meaningless. Ever.

6:14 AM ET | 04-20-2007 | permalink

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The Pictures Say More Than Any Words Could

Since Monday, like everyone else, my attention has been focused on the tragic events at Virginia Tech. When I wrote in Monday's blog that I thought the world had gone mad, I didn't realize how true that was. Since that day, I've been thinking about whether or not to write about it. I wasn't sure if this was the right forum, and I wasn't sure if I had anything to add to what's already been said. In many ways, the pictures of the young people on that campus, their faces distorted by grief, say more than any words could.

But it doesn't seem right to ignore it, either. To be honest, it didn't seem right to just keep writing about cancer. Many people will say how tragic it is that someone gets cancer. Cancer is just a disease. The shootings, so many lives cut short in an instant, so many people now bearing emotional scars that may never heal -- that is a tragedy.

The death of any person is painful for those left behind. But many deaths, disease, old age, can be understood. There is no understanding the deaths on that campus. There is no way to make sense of it. All we can hope is that time will ease the pain that is so raw right now.

So in the end, I just want to add my voice to those offering what comfort we can and to echo what has been said so many times already: that we will keep all those touched by this tragedy in our thoughts and prayers.

6:07 AM ET | 04-19-2007 | permalink

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A Place in Our Old World

Cancer World. It's where most of us live. Once you cross that border, get that stamp in your medical file rather than a passport, you're in a different world. Actually, we exist in both worlds: the world of scans and tests and chemo and all that, and the world of our old life, our friends and loved ones, what we used to do, who we were.

We are different, though not by choice. Our lives have changed -- our dreams and nightmares, too. We come to know our new world as well as we knew the old one. There are new customs, new friends -- even a new language. Sometimes we feel that we have been separated out somehow.

And then Doris wrote in the other day to say this.

I think that more than fearing a painful death, I dread being separated, seen as "Other" -- looked at with pity or revulsion.

The Other. We acknowledge, at least to each other, that in some ways this has become our new nationality. It's almost impossible for anyone who hasn't experienced it in some way to understand what we go through. While there is knowledge to be found in this new world, I think we all long to return, full time, to the old one. I know most of us feel that what we have gained is incredibly valuable, not to be dismissed or given up. But at the same time, wouldn't we all like to return to the old world that seems so much simpler now?

Normalcy. When people ask what they can do for a cancer patient, I've always told them, "Just give them a little bit of normalcy." Talk about anything else but cancer. Go out to dinner or a movie; argue about politics. Once you have cancer, it doesn't mean it has to occupy every waking moment.

Doris is right. We don't want to be looked at with pity, and certainly not with revulsion. We want to be seen as the people we were, who are facing new and difficult challenges. Maybe what we really want -- and maybe it is out of our reach -- is to realize somehow that in spite of having relocated to Cancer World, we're still not that different from the people we used to be, that we still have a place in our old world.

5:48 AM ET | 04-18-2007 | permalink

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Hitting Too Close to Home?

I was watching The Sopranos last Sunday, and Johnny Sack, the head of the New York organized crime family, died of cancer. It's rare to see cancer patients on TV. They sometimes serve as background for the sexual labyrinth of Grey's Anatomy, and occasionally the heroine of a movie of the week dies of cancer. But they usually look fabulous up to the very end. The Sopranos pretty much got it right. Johnny Sack looked like he had cancer.

And it made me uncomfortable. I have been arguing all along that cancer patients should show up more on TV shows, movies and certainly on news coverage. After all, cancer is a part of life. So why was I uncomfortable? Some of the conversations in the show certainly hit close to home. The doctor looking at him and saying, "Three months." His grasping at straws when others gave him a rosier picture.

And the hospital gowns. I think I have a visceral reaction to those now, seeing them and wearing them. In their shapelessness, they are somehow dehumanizing and a little depressing. When you put one on, you feel like a patient. And, of course, I have to wage my own private battle to find one of the very few and prized XLs.

But I'm still not sure why this episode made me uncomfortable. It felt a little like those rare times as a teenager when you made a horrible mistake and went to an R-rated movie with your parents. I was acutely aware of my own reactions. Like I said, they pretty much got it right. Maybe that was the problem. We've all seen too many cancer patients, in the hospital hallways, the chemo room, the radiation waiting room and in the mirror. I guess I'm being a little hypocritical. I think it's important to look at cancer in an unblinking way. To show it pretty much the way it is. I'm just not sure I want to see it. After all, next week I'll see it again for real when I go back in for another brain scan. Maybe that's enough.

5:46 AM ET | 04-17-2007 | permalink

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After Cancer, A New World View

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

I used to thrive on chaos. Made my living off it, actually. The worse things got, the better it was for journalists. A war? Natural disaster? We'd all start salivating like Pavlov's dog. At least I would. The adrenaline, the excitement, the adventure -- that was my life.

I look at all this a little differently now. I still miss going out on those assignments. That's probably some sort of character flaw I'll carry the rest of my life. But I look at the news differently these days -- not as stories I'll need to cover; I'm more removed now. I look at what's happening as just another person who lives on this planet. And it's clear the world has gone mad.

War and bombings and massacres and starvation. Obsession with celebrity while others go hungry. A debate as to whether racist remarks are ever acceptable? And no, that's not humor. That kind of thing is never funny.

Maybe I look at the world differently now, maybe all of us who have faced cancer do, because our personal worlds went mad as well. As much as I loved chaos, I also loved control. I believed I could shape events through sheer force of will. I could bring order, at least to my part of a situation. When I was diagnosed with cancer, that changed. I lost control over many parts of my life. I couldn't shape those events. There was chaos -- that's for sure -- but it wasn't the kind I liked.

Gradually, as we learn more about the disease and what it does to us, we get back that control, a little at a time. It will never be the way it was before. But none of us are helpless. None of us are passive witnesses to our own deaths.

And as we've said so many times before, we learn things. One thing above all else: Each day is precious. I used to know that, before the cancer. Now I believe it with every fiber of my being. So when I watch the news, I don't get excited. I don't go to the closet and get my suitcase. I get angry. Really angry. Because most of what I see comes down to one thing: the cheapening of life. I can think of no greater crime. And somehow, in some way, we will have to answer for that.

4:05 PM ET | 04-15-2007 | permalink

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I've Changed More Than I Thought

I was being interviewed by a reporter as part of the publicity for an upcoming documentary on the Discovery Channel. Ted Koppel has been following my case from the beginning, and the program will also talk about the My Cancer blog and all of you. It's scheduled for May 6. I was telling the reporter about my scare about the new brain tumor that wasn't. And she asked me what, I guess, was the most logical question. "What did you do? Did you get your will together?" I have to admit that the question really made me think. The day I got that news, before I got the good news that it wasn't true, was really difficult -- I won't deny that. A million things did go through my mind, but getting ready to die wasn't one of them.

Maybe it was because I'd been through it before. I knew what the treatment was going to be. And yes, I was dreading going through it again, but at least I knew what was ahead of me. I was fairly confident that we could kill the tumor. I was depressed, because I thought that my time free of active tumors had been cut short, and because I thought a new brain tumor was a sign of bad things to come.

But I think my main preoccupation was just getting back to the business of being a cancer patient. How soon could we schedule the treatment? Did I have to have any procedures to get ready for it? Who should I tell and what should I say? I wasn't thinking that I was going to die.

It's funny, the first time I was told that I had a brain tumor, I was totally destroyed. That came with a fairly bleak prognosis, too. I thought I would be dead in a few months, and I did start thinking about what that would mean.

But I know more now. I know more about cancer, about the treatments, about myself. Bad news doesn't cause panic anymore. It's hard to hear and it's painful, but it's just another hurdle. I guess I've changed more than I thought. I have prepared for my death in many ways, but I no longer think it's imminent. I guess maybe I've just gotten more stubborn.

One last reminder about Talk of the Nation on NPR at 2:00 p.m. EDT on Monday. It will be a live show with an audience, and hopefully some of you will be included as guests or will be able to call in. I can't wait.

5:58 AM ET | 04-13-2007 | permalink

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Revisiting the Language of Cancer

Words matter. That's obvious. A number of you wrote in over the last few days to comment on my use of the word "fight." As in, we're "fighting" cancer. I thought about that when I was writing it. When this came up before, one person wrote in to say that she hated that word. If someone was fighting cancer, but passed away, does it mean that person lost? That he or she didn't fight hard enough? That they failed? Of course not. I haven't forgotten that and so I rarely use "fight" in that way. But I couldn't think of another way to say it.

Another person wrote in to say she preferred the word "cope." That's pretty good. After all, we have to cope with a lot: chemo, radiation, side effects and so on. Just getting through the day -- just coping -- is an accomplishment. But "coping" sometimes seems a little too passive. We don't just wait for things to happen to us. We're not just reactive. We're more active than that.

Most of the other words are similar to "fight." "Attack," "struggle," "victory," "battle" -- all of those are used when talking about cancer. And there are problems with all of them, too. So what's the right thing to say? "Resist?" It's hard to use that without thinking of the line from Star Trek: "Resistance is futile." That's certainly not the way I feel, nor is it the message we want to send. So "resist" is out, too.

What does that leave us? Maybe the best thing to say is that we all just "deal with it." Some days that involves fighting; other days, coping. Some days we don't win, some days it's a struggle to do the smallest thing and other days the battle swings our way. We all just deal with it in our own ways and do the best we can on any given day. I'm going to be inconsistent here by using this word after all, but sometimes just making it to tomorrow is a "victory" -- one that we should be proud of.

6:33 AM ET | 04-12-2007 | permalink

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Drumsticks and Art Supplies

I did two things yesterday that, when I think about it, were pretty much intended to give cancer the... well, you know, the gesture. When I was 11 years old, my parents started me on the drums. I think they must have known something, because I'm pretty sure I'm tone deaf. A brief but disastrous six months of piano lessons showed that I didn't really have an aptitude for that, either. But the drums? I loved them.

When I got into high school, I kept playing, but there seemed to be less and less time. When I went to college, there was no time, and college dorms just didn't have the room or the soundproofing for my drums. So one summer I sold my set. Over the years, I've picked up drums and percussion instruments in various parts of the world, but those were just for fun. I hadn't picked up a pair of sticks in years. Decades.

My other hobby, and this is going to take some explaining, is making little figures out of modeling clay. I guess I just never stopped playing with Play-Doh. I mostly made chess sets, although I'm not sure I ever actually finished one. But it was fun and relaxing. I had pretty much given that up, too. I hadn't touched clay in at least ten years.

So yesterday, I went to a music store and bought a practice pad and a pair of drumsticks, and I was amazed to find the same book that I had studied all those years ago when I was just starting out. I started practicing. It was a little depressing at first, I have to admit. My mind knows what's supposed to happen, but my hands don't. But it was still fun.

And there was an art store in the same shopping mall, so I went and bought some clay, and started making those figures again. That I hadn't forgotten how to do. I think the next thing may be to learn Arabic. I've always been fascinated by it and studied it for a few weeks at work a few years ago. I've been looking at those computer programs they sell in malls.

Now, this is probably not the most interesting stuff for a lot of you, but there is a point here. I didn't just walk out of those stores with bags of music and art supplies. I walked out with something much more valuable. The hope and confidence that I have a future. That I will have time to enjoy my new purchases. That the cancer won't get me before I can play the drums again the way I used to. That would be sweet.

One more reminder about Talk of the Nation next Monday. We'll be talking about cancer and this blog, and if you're going to be in Washington and want to be in the studio audience, send an e-mail to talk@npr.org.

5:53 AM ET | 04-11-2007 | permalink

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An Invitation to 'Talk'

What do we do to fight cancer? I mean that literally. What do we do? I know what my doctors do. They are fighting it with all the knowledge, skill and tools they have. Sometimes I feel like I am the battleground. My body is where that fight takes place. But what do I do?

Of course, I make the decisions as to how we're going to fight it, but sometimes I think my job is simply to endure the battle. I've never had symptoms from the cancer, except for some slurring from the swelling around the brain tumor. Otherwise, my cancer has been sort of abstract. I know I have it because I've seen the pictures, and my doctors have told me. But otherwise, I'd have no idea.

My body fights the cancer in ways I don't really know, I guess. I'm sure my immune system is doing the best it can, but clearly, the cancer was able to overpower it and take hold. Physically, at least, my role seems to have been to cope with the treatments, to simply get through them and let them do their work. But there must be more to it than that. So, of course, we come face to face with the intangibles. Attitude? I think that's hugely important, but having a good attitude is no guarantee that you'll beat the Monster. Spirituality? I think that's more about how you face the disease, and your life, and what comes next.

So I end up back at my original question: As I sit here in my chair writing this, can I do something to fight the cancer? I can send bad thoughts its way, I guess, but that's not a real answer. What is it we do? I'd love to hear your thoughts.

Next Monday, on the NPR program Talk of the Nation at 2:00 p.m. EDT, host Neil Conan will be talking about cancer and the My Cancer blog. I'll be there, and we'll have a live studio audience. If any of you will be in the Washington, D.C., area that day and would like to be in the audience, please send an e-mail to talk@npr.org. I hope some of you can be there, and that we can meet in person.

6:08 AM ET | 04-10-2007 | permalink

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What Should I Do When I Grow Up?

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

After I was diagnosed with cancer, I used to joke that I needed a job, not a career. Now, I thought that was funny, and when I said it, my friends would laugh politely. Maybe I'm the only one who really thought it was funny. Most people find it hard to laugh about cancer, after all. But given what my doctors and I believed at the time, it was true. My lifespan, or at least the predictions of my lifespan, was measured in months. I needed a job that would keep me busy, and also provide me with health insurance. But a career? That was part of my old life.

Well, now I'm having second thoughts. As best we know, we have killed all the tumors we can see. I'm pretty sure there's still cancer in there somewhere. There's a blood test that's supposed to indicate if cancer is there, and if so, how much. After my most recent procedure, the marker number went up. We don't know what that means, but I guess we'll find out at some point.

Before I wrote this, I went back and looked at some of the first blogs from last June. In one of them, I wrote about my frustration that cancer had put limits on my life, that my future was no longer wide open. Now I'm feeling optimistic. Cautiously optimistic, but I'm starting to think about the future in a way I haven't in a long time.

It looks like I will be here to read the final Harry Potter book. I will get to see the whole season of 24 and find out how Jack Bauer saves the day -- again. And I'll be here to see if sanity prevails and Sanjaya is voted off American Idol. Granted, those seem like trivial things to want to live for. But you have to start small and build up. So I'm starting to think about the larger issues, too.

I'm starting to work out again. And my muscles are letting me know that I have neglected them for the last year and a half. It's not the kind of pain that comes from chemo, or another procedure, and another one after that. It's the kind of pain that feels good.

I'm thinking a lot about what I should do -- what kind of work I should find. I'm still a journalist. That's all I've ever really done besides fast food. Don't get me wrong, I'm good on a grill, but I don't think I want to go back to all that.

Now, I know my newfound optimism, my new dreams about the future, could be cut short by a bad scan. One white spot on those black and white pictures of my body, and things will change again. But in the meantime, this feels pretty good. I just wish I could figure out what I should do when I grow up.

4:23 PM ET | 04- 8-2007 | permalink

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Peace

On this Good Friday and the fourth day of Passover, I think it's a good day to remind ourselves that the peace, the healing, that we so desperately hope for and seek can actually be found in so many places: in the fellowship of a Passover Seder or the silent awe of an Easter sunrise. In the smiles on children's faces when they find their Easter baskets full of candy or in the quiet appreciation of the miracle of another Spring. Or perhaps most importantly, in the certain knowledge that none of us walk this road alone. I wish you all Peace.

6:03 AM ET | 04- 6-2007 | permalink

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Looking Back on Life Before Cancer

There are some days when I just sit at my computer trying to figure out what I want to say that day, actually hoping that inspiration will strike. I worry about repeating myself. Luckily, I have editors who make sure that I don't. I pace sometimes, but that doesn't seem to help much.

This is one of those days. But I started to think about what life was like before my diagnosis -- the day before they found the brain tumor. I went for a five-mile hike with a friend. I was already slurring my words, caused by the swelling in my brain from the tumor, but none of my friends mentioned it. I assume they all noticed it -- I can't believe they didn't -- but I guess they were too polite to say anything. I've told them that from now on, especially with that scare about the new brain tumor, I expect them to speak up.

At that time, I was also in the middle of the application process for a job I really wanted. But I really don't remember much else about that day, or what was going on back then. What did I worry about? What was I thinking about? What took up all my time? I honestly don't know.

That would all change within 24 hours, of course. After that, my days were filled with worry, fear and uncertainty. And gradually, that settled down, too, and cancer became a major part of my life, but not the only part.

I know that my life before wasn't empty. By any means, I was busy all the time. But thinking back, I wonder what I was busy with? What got crowded out by the disease? In those days before the diagnosis, I wasn't sleeping well and I was having headaches, all apparently caused by the tumor. But I didn't know that. I just thought I was tired and sleep deprived. All I needed was rest.

My life has changed dramatically in the last year and a half, but I wish I could remember more about those days before the beast arrived. What was I thinking about? What seemed so important?

5:49 AM ET | 04- 5-2007 | permalink

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Finding a Way to Heal

A woman named Martha wrote in with a great quote she attributed to a Dr. Rachel Remen:

"Cure is about the recovery of the body. Healing is about the recovery of the soul."

I've been thinking about that quote ever since I first read it.

So many of us are told right off, in that first conversation about our diagnosis, that a cure is most likely not in our future. The wording may be different, but the impact is the same. And our bodies take a beating. Sometimes we get a break; sometimes there is time for the body to recover -- at least a little bit. But in many cases, the assault on the body is unrelenting.

Does that mean that healing is not possible? I think that even when the body is being beaten down, it is possible to find peace -- peace with ourselves, peace with the lives we have lived, peace with what is happening. Maybe, even in the midst of all of the pain, healing is possible.

And I think that's true for the other victims of this disease: the caregivers. A number of you have written in over the last couple of days, talking about how difficult it is and the fears you have about the future, your loved ones and the loss you will most likely experience. I cannot imagine how difficult it is to watch someone you care about go through this ordeal and not be able to do much except worry. But that's really not true. You may not realize it, but just the presence of friends and loved ones and the concern you feel contributes, maybe not to the cure, but certainly to the healing of the person with cancer.

For all of those out there who have kept vigil by the bedside of a loved one, who have anguished over the lack of a cure or the inability to make all this go away, I would just offer this reminder: You may not need to be cured, your bodies may not be ravaged by disease, but you, too, need to find a way to heal.

6:07 AM ET | 04- 4-2007 | permalink

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A Beautiful Spring Day

Fear is a funny thing. I think it affects all of us in different ways. When I used to make my living by going into bad situations, I would usually be more nervous or afraid before anything happened. Once we got into it -- whatever "it" was -- I tended to relax and go to work. Yesterday I wrote about my fear of my cancer coming back, and that prompted this response from Diana:

"I am presuming that your fear is about dying and my thought is that maybe if you could make some headway with your feelings about death, your fear of your cancer returning might be less frightful."

I don't think I'm afraid of death. That's not really what I meant. If my cancer had come back last week, I don't think I would have been feeling fear. Sadness, sure. Some anger, too. But probably disappointment more than anything else. And resignation, not to my fate, but to starting the treatment cycle all over again. But once the cancer is back, I think the time for fear is probably past. We know what it means to get a positive scan. We know what we have to do. We know what's likely to happen.

But again, I wouldn't be feeling fear about my own death. At least I don't think so. I have faced my death before, long before I ever thought cancer would be a part of my life. And when those prognoses were coming fast and furious -- three months, six months, 20 months -- I thought about my death a lot. But I don't fear it. As I've said before, I'm at peace with this process, however long it takes.

But that doesn't mean I'm eager to die. Far from it. As I write this, it's a beautiful spring day. The cherry trees are in blossom all over the Washington area. I went for a long walk along the Potomac River. It's a good day. So no, I'm not afraid of death. I'm just not ready for it. There's a lot I want to do before that day comes.

5:51 AM ET | 04- 3-2007 | permalink

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All My Fear Came Back

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

I have to admit, my head is still spinning after last week. It all started with an MRI Tuesday. For those of you who have never had one, it's a very strange experience. You lie in a big tube, your head and body immobilized, and you are bombarded by really loud and very strange noises. Those are the magnets in the machine. Clicks and bangs and buzzers, all at full volume. The first time you go through one, it's a little disconcerting.

After a while, though, like everything else, you get used to it. I dozed off through most of this last one. But all the while, the machine is searching. Looking and prying, trying to see the tiniest piece of cancer that might be hiding in my brain or spine. The MRI lasted about an hour and a half, and then I was done. I tried to get the technician to tell me something. Had she seen anything? But of course, she was totally professional. Which means she told me nothing.

Then the waiting. The scans have to be read by experts, so you usually don't get the results until the next day. And when that phone call came, my heart sank. It appeared that a new tumor had developed on the site of my original brain tumor. That's a common problem. My tumor was removed by surgery, and then I had radiation to clean up the area where it had been, to kill any rogue cells the surgery might have missed. But it's almost impossible to get them all.

But 24 hours later, the world changed again. After a whole team of doctors had looked at the scans one more time, they decided what they were seeing was not a new tumor. It was probably scar tissue from that first operation. So I got a reprieve. The governor called at the last minute. I would not have to go through the gamma knife procedure. That is an amazing machine that focuses radiation as precisely as a laser. They screw your head into a frame -- literally screw it in -- and that hurts. I wasn't looking forward to it.

We always talk about cancer being a roller coaster ride. No kidding. And I feel a little like you do when you first get off a great coaster. My stomach is somewhere up near my throat. My head is spinning. My heart is pounding. It was a helluva ride. But what did I get out of it? I'm not sure. An adrenaline rush, for sure.

As I think about it, I realize that maybe the cancer is playing with me. I was getting pretty cocky, talking about how we had killed all the visible tumors in my body. I was winning my fight. I was starting to think about the future, something I had pretty much stopped doing. And all the cancer had to do was say, "Boo!" And all my fear came back. My world changed, even if it was only for a day. I'm pretty sure there is cancer hiding somewhere in my body, and I'm sure it got a good laugh out of all this. But that's OK. When it does show up for real, when it does get big enough to see, then it will be my turn. This isn't over yet.

4:47 PM ET | 04- 1-2007 | permalink

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