Looking Forward with Hope

I have to admit that I'm pretty glad that 2006 is ending. It's been a tough year for so many of us. And there's always the hope that 2007 will be better. Me? I think I'd settle for it just being different. But this is the time to look back on the past year and remember the good times, and to look forward with hope — hope that it will be an easier year, hope that maybe they'll find a cure, hope that miracles do happen.

There won't be a new posting next Monday. We're all taking the day off, so this will be it until Tuesday. So let me just wish you all a happy new year. I wish all of you the best in the coming year, and I want to thank all of you for what you have given me this year. Words cannot express how grateful I am to all of you, so I will just say "Thanks" again. I'll see you in 2007.

Leroy Sievers

6:17 AM ET | 12-29-2006 | permalink | comments (30) | e-mail post

One Day at a Time

I had my first radiation treatment today. No big deal. The wait was the longer ordeal. The radiation rooms were backed up, so the waiting rooms were packed. Half the people in regular clothes, the other half in hospital gowns and various other pieces of clothing. Some could keep their pants on, others just had the gowns and their socks and shoes.

If anyone from a hospital is reading this, I have one request. Please, please get roomier gowns. I'm a big guy, and I have to walk around in a gown that clearly isn't intended for someone my size. I live in fear that if I take a deep breath, the seams will burst.

But the treatment itself was really nothing. You lie on the table, get zapped for about 30 seconds. The machine rotates to go underneath you (I guess they want to brown both sides). It zaps you again, and that's pretty much it.

While I was waiting for my turn, I ran into one of my old doctors. He had seen me about a year ago when I had the brain tumor. I was embarrassed because I didn't recognize him at first. I am terrible at names and faces. He said he had kept up on my progress and read my charts. I appreciated the concern.

There was a lot that went unspoken in our conversation. He clearly knew what my charts showed, that my case isn't really going the way we would hope. There's not much you can say in those situations. He sort of shrugged. I did, too. He knows. I know. And he said to just take it one day at a time. That's really all you can say. I appreciated the fact that he had been watching over my case without my even knowing it.

So this will be my routine for the next 10 days. I hope that when it's over, the tumors on my spine will be dead. Then I have to decide what to do about chemo. But that's two weeks away. Like my doctor said, all you can do is take it one day at a time.

Leroy Sievers

6:12 AM ET | 12-28-2006 | permalink | comments (17) | e-mail post

Back to 'Normal'

I was up at the hospital for a practice run on my radiation treatment. The technicians want to line everything up and make sure they're ready for the actual treatments. It's funny, I've been to the radiological wing before when I had a different type of radiation treatment to clean up the spot where the brain tumor had been. But this radiation treatment for my spine is a new thing for me. The nurses and staff were all treating me like I was a brand new patient. Telling me where to park, where to go, how to swipe my ID card in the computer.

Now, I hate being new at anything. I don't know why, that's just something that always bothered me. I liked to be the first one in on a story. Wanted to be the person who knew their way around. So my immediate reaction to the radiation staff was to want to say, "Oh no, I'm a veteran. I've been through all this before."

Why on Earth would it matter to me if they thought I was a new patient or one who's been going through this for a while? It's not like the experience I've gained over the last year makes me any more or less than what I am when I'm at the hospital: a cancer patient. I just find it funny that I reacted that way.

And now I have tattoos! My body looks like something out of a video game, with little targets drawn all over, and little aiming points tattooed on my stomach. I had never really considered getting a tattoo. Luckily, I was never that drunk when I was anywhere near a tattoo parlor. But if I were going to get a tattoo, I probably would have gotten something different. I mean, after all, how interesting is it to have a series of dots tattooed on your body? Doesn't quite give me that "bad boy" image that's supposed to come with ink.

So after the Christmas holiday — and I hope you all had a wonderful time — it's back to normal. And for me, that means tattoos and a stomach covered with targets. How did that ever become normal?

Leroy Sievers

5:52 AM ET | 12-27-2006 | permalink | comments (17) | e-mail post

Unanswered Questions and New Year Hopes

The following is a commentary from Morning Edition, Dec. 26, 2006:

Another Christmas has come and gone. Carols have disappeared from the radio, replaced by screaming ads for after-Christmas sales. Piles of boxes and wrapping paper are in the trash. Lots of toys are already broken. Leftover turkey still sounds good, though. Better than it will in a week or so.

We're already turning our attention to New Year's — where to go, what to wear. It all moves so fast. It's hard to find time to stop and reflect on the past year and the coming one.

The year ahead seems blurry to me, as I'm sure it does for most people with cancer. There's one huge unanswered question at the top of the list: Will I be here next Christmas? There's really no way to know. I got rear-ended the other day. I had stopped for traffic and a man crashed into my car. He was in a rush to pick up his wife at the mall. Even a minor accident can shake you up. It reminded me that random things happen all the time. Here I am worrying about cancer when I should be watching the car behind me.

So what are my hopes for the New Year? It seems trite to say I hope to survive. That's pretty obvious. I guess my real hope is, whether I have a whole year or less, that I use the time wisely. That I read good books, that I laugh with my friends, that I listen to good music. Even on bad days, I hope to find something that makes living that day worthwhile.

If my cancer takes a turn for the worse, I hope I meet that challenge with courage and dignity. I hope I can comfort my loved ones and help them through this ordeal. I hope I can help them come to grips with a process that I'm already at peace with.

I hope I find the time to say the things that need to be said. That I let the people in my life know how important they are to me. That I find the words we so often leave unspoken. I hope that even when things look dark, I remember there are many others out there facing much greater challenges. I hope I'll always remember that, for better or worse, this is the burden I've been given to carry. And so I will carry it as long as I have the strength.

In the end, even as a cancer patient, maybe my hopes for the coming year aren't all that different from anyone else's. Above all, I hope I remember that an easy life is not always the same as a good life. That the challenges, the defeats, as well as the victories are what make things interesting, and that at the end of each day, I want to be able to say I lived the adventure. And oh yeah, I hope I can lose some weight this year, too.

Leroy Sievers

5:53 AM ET | 12-26-2006 | permalink | comments (39) | e-mail post

Happy Holidays to All

It's the last night of Hanukkah. Christmas is three days away. So I want to take this opportunity to wish all of you — those suffering with cancer and families, friends, caregivers, and the doctors and nurses who are in this fight with us — the best of this holiday season.

First of all, I hope that Santa brings the tumors lumps of coal this year — that's all they deserve.

For the rest of us, I hope that this is a time filled with laughter and joy, hope and reflection.

As I look back on the last seven months or so since we started this blog, I realize how grateful I am for all of you. Some of you I correspond with, some I have even met and some I will never know. But we are stronger for being a community, we are stronger for the support we give each other. We are stronger for the friendship we share. What better Christmas present could there be?

We're all taking Christmas day off, so I'll be back with a new blog on Dec. 26.

Merry Christmas to all of you.

Leroy Sievers

6:15 AM ET | 12-22-2006 | permalink | comments (29) | e-mail post

The Hard Part Is Waiting

As devastating as bad news can be — and we've all been through that — good news can be incredibly sweet. I had a brain scan yesterday. Since I have a new tumor on my spine, my doctor was worried that the cancer would go back to my brain. I had a scan just over a month ago, but he wanted me to have another just to be sure.

So I was back up at the hospital early this morning. Getting an MRI is easy: You lie on the bed, it pushes you into the machine, the machine makes loud and strange noises for a while and you're done. Then the hard part begins.

It takes a while for the scans to be read by an expert. Of course, as the patient, you want to know right away. Well, it doesn't work that way. I drove home, did some work, ran some errands and tried to stay busy, jumping each time the phone rang. I'm not really a patient person, so the waiting is hard. But you also can't bug the doctors. They know how important this is; they'll get you the results as soon as they have them.

So early this afternoon I got the call. Everything seems clear. That is such a relief. It doesn't change whatever else is happening in other parts of my body, but that's one less thing to worry about. Another brain tumor would have been a big deal. I'm glad that I don't have to face that now. So the next step will be radiation on my spine — by all accounts, a pretty easy procedure.

I guess today counts as a good day.

But I don't want to finish this without including a line sent in by Karen:

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, totally worn out and proclaiming, 'WOW, WHAT A RIDE!!!'"

I wish I'd said that.

Leroy Sievers

6:56 AM ET | 12-21-2006 | permalink | comments (12) | e-mail post

Outside the Chemo Room, Looking In

A while back, I wrote that Ted Koppel and Producer Elissa Rubin had come up to Hopkins to do some shooting for an upcoming program on cancer for Discovery Channel. Elissa is not only a colleague, but a good friend, and I asked her if she would share her thoughts about the experience. Here's what she wrote:

A couple of weeks ago, I was getting ready to make a scouting trip to Johns Hopkins Medical Center for a documentary we're shooting on Leroy Sievers. The day before we went, Leroy asked me if I would write about the chemo room. He was curious to see it through the eyes of someone who had never experienced it before, and I suppose, more to the point, someone who didn't have to be there.

What struck me almost instantly was that no one really looked sick. People were in street clothes, flannel shirts and blue jeans, carrying purses and computers. There was a woman in a purple cashmere sweater, one man in an elegant business suit. No bathrobes, no hospital gowns. Aside from looking a little tired, no one looked like he belonged in a hospital. Or that their lives now hinge upon what happens in this room, or that each one now exists in a world of prognoses and time limits. None of that was evident. I felt like I was looking around the platform of a metro station, except for the surreal fact that everyone was hooked up to a machine, with chemotherapy running through their veins, killing the cells that are trying to kill them.

Then you look around and think about what it means to come here, every week, sometimes from hundreds of miles away, and sit plugged into a machine for six hours. You see a room of horribly interrupted lives — the job promotion that just couldn't be taken, the missed soccer games, term papers that would have to be turned in next semester, maybe next year. Marriages thrown into shock, children put in the upside-down position of having to worry about their parents. If anything, this should be a place of raw emotion on display — after all, everyone is in the same position and everyone knows what the person next to him is probably thinking and feeling. It should have been a room filled with anger, yelling, objects crashing against the wall — yet no one even looked particularly sad. This was a place of remarkable calm. Maybe because it was a place — the only place right now — that offered anyone any hope. People were here to fight their cancer, to get better, to keep on living. This was the place for the people who have that option — the so-called lucky ones. At least their doctors were able to offer a plan — one that explicitly said, "You do have a chance to beat this, to live longer." This was a room of science and medicine, bright lights, protocols and doctors. Finally, there was an opportunity to do something to a disease that had stripped you of all control.

All of those people, so exquisitely ordinary, looking as regular, as healthy as I do. Sending e-mails. Reading the newspaper. Talking on the cell phone. It struck me there was no reason why I, too, wouldn't be sitting in that chair next year, next month.

As I said, the main reason for my visit to the chemo room was to see the location as a television producer. I wanted to meet the hospital staff, put them at ease about what our cameras would and would not shoot. I was there to look at the light, note the space, listen for potential sound problems. But I was more than just a bit distracted from my job. I was really there because my friend has cancer. And I don't want him to be here. And I don't want him to feel the abstract fear I had, in the real and suffocating way he must feel every morning when he wakes up and remembers all over again what he is facing. But as much as he hates it, as much as I hate it, the chemo room is keeping him alive.

-- Elissa Rubin

Leroy Sievers

6:07 AM ET | 12-20-2006 | permalink | comments (19) | e-mail post

Getting Hit, but Not Feeling the Pain

Some years ago, I was covering the election in Chile in which Pinochet was thrown out. One night, the army turned on the press corps and beat many of us badly. It's a long story, and I won't bore all of you with it, but I still remember one funny thing about it: At one point, I was being chased by three soldiers who were hitting me with clubs. I could feel each blow, but they didn't hurt. I guess it was the adrenaline and shock. Of course, once it wore off, it hurt like hell, but at the time, I remember thinking how odd it was to be hit and not feel pain.

Well, that's sort of the way I'm feeling these days. I think after a while, you get bad news, you feel the blow, but the pain doesn't come right away. I guess our bodies are still trying to soften the blows. Last Friday, I got more bad news: another new tumor on my spine. Now no one seems particularly concerned about this one. I am going to have radiation on the other spinal tumor anyway; we'll just zap the new one at the same time.

But it's clear that my cancer has taken a turn. It's broken through the chemo and it's growing and spreading. I still haven't decided whether to try more chemo — a different mix of drugs this time. No one knows how effective it will be, if it is effective at all. It all comes back to that question of, "Is it worth it?"

In the meantime, we're going to attack the tumors that show up in dangerous places: my spine, my brain, if one comes back there, and I'll find that out this week, too. Otherwise, the tumors in my lungs are in places where they really can't do a lot of harm, so they are lower on the priority list.

From the beginning, I had a pretty good idea of how this was going to play out. I always knew the clock was running, but now I think I can hear it. I am feeling some pressure to get a lot of things done. This doesn't mean that my death is imminent, but I think my doctors and I all have the sense that things are going to start happening faster and faster.

But in the meantime, I have most of my holiday shopping done. The Christmas tree is here, just waiting to be decorated. And it's a beautiful day. I think it's in the 60s in Washington — and it's December. So I know the blows will continue to come. I know that soon I'll feel them. But in the meantime, I have to go brave the post office and then just enjoy the day. The pain from those hits will come soon enough.

Leroy Sievers

6:36 AM ET | 12-19-2006 | permalink | comments (22) | e-mail post

When a Trip to Hawaii Is Bad News

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

"You should think about going to Hawaii." Who would ever think those words would count as bad news? I've talked before about my plan to go to Hawaii when it looks like my death is imminent. Rather than spend my last days in a hospital hooked up to machines, I'd prefer to be drinking Mai Tais by the pool on Maui. I actually had a serious talk about that with my doctor when I was first diagnosed. I asked him if he would tell me when the time is right, and he promised he would.

So last week, when he told me I should think about going to Hawaii, I sort of froze. But he wasn't saying I'm about to die. He said that right now, I'm in the best shape I'm going to be in, because in the coming months, my health will most likely deteriorate. He wasn't saying go to Hawaii to die. He was saying, go now while you can enjoy it. Good advice.

We're still trying to figure out what to do. When I was first diagnosed, I was given several prognoses: six months, twelve months. I made it past both of those. The final one was twenty months. That's not twenty months until you die, it's a prediction of twenty months before the cancer spreads or grows, before it breaks through the chemo. That's called "progression." Well, it turns out that my cancer has done that after only twelve months. The implications are obvious.

I've used the roller coaster analogy before. Right now, I feel like I'm sitting at the very top of that first big hill, the point where you just start to feel yourself tipping over and heading down that first big drop. I face a future that, if it goes as predicted, will consist of switching chemo regimens as the cancer breaks through each one, turning each time to a combination of drugs that will be less effective than the previous one. There will come a point when it just won't be worth it any more, when the right decision will be to say, "No more."

I've thought about that decision, but really only in intellectual terms. I'm sure that actually making that decision will be the most difficult thing I ever do, for me, and for my loved ones and friends. I'm not looking forward to it.

The strange thing is, I feel pretty good these days. It's hard for me to believe that my case has taken a turn for the worse. I don't feel that. I'm certainly not giving up. But I will admit that I'm tired — tired of the bad news, tired of having to choose between options that don't seem very different from each other. Just tired emotionally. As the T-shirts they sell at the hospital say: "Cancer sucks."

Leroy Sievers

6:45 AM ET | 12-18-2006 | permalink | comments (57) | e-mail post

How Much Do You Tell?

This weekend is holiday party weekend. I'm looking forward to seeing old friends that I haven't seen in a while. But it's also going to raise that old issue: What do you tell people? We've talked about this before; I think it is one of the harder issues we face. How much do you tell people? Especially at a party, in a festive setting?

I've been thinking about that more often these last couple of days, just because my latest news hasn't been all that great. So when I see people I haven't seen in a while or that I don't know all that well, what exactly should I say? I'm not going to lie, but I don't think that I'm going to tell the "whole truth and nothing but the truth," either.

There's a practical issue there. I figure if I start telling everyone who asks exactly what is going on, pretty soon I'm going to be standing by myself at the party, with a couple of feet of empty space around me. I appreciate everyone who asks, I appreciate the concern and the friendship. But the whole truth? I save that for more private conversations with very close friends.

So I think this weekend, I'll just say that I'm feeling pretty good. That's true. And that I'm doing all right. That's also true, or at least mostly. But what I'm really hoping is that it just won't come up that often. I'm looking forward to a couple of hours when I don't have to think about it, don't have to talk about it. I want to talk about last-minute shopping, and maybe a little gossip. I want to hear what other people have been up to. I want to eat a lot, maybe drink a little too much, laugh, trade old stories and hear new ones.

In other words, I want to have a good time. The cancer will be there next week. There's still plenty of time to talk about it.

Leroy Sievers

5:52 AM ET | 12-15-2006 | permalink | comments (15) | e-mail post

When Do We Get to the Easy Questions?

I'm sitting here trying to make sense of all this. I had new scans on Tuesday. I guess you'd have to say that the results are mixed. All of the tumors stayed the same: no growth — except for one. One of the tumors in my lungs grew substantially. Not the news I was hoping for, obviously. But it's a little strange for one tumor to grow while the others didn't. Even my doctors said they hadn't expected that. So what to do?

First things first: We've decided to go ahead with radiation to kill the tumor on my spine. Even though it was unchanged, I think we all feel that it's better just to kill it and be done with it. The other decisions aren't so easy. The normal response to this kind of development would be to change chemo regimens. Switch to a different set of drugs. Sounds easy, but here's the problem: I can switch to an alternate drug cocktail, but no one knows whether it will be effective. It could shrink the tumors, hold them in place or do nothing and allow them to grow unchecked. You don't know until you try it.

I like to gamble, but those odds don't seem so great to me. The studies show that if you do switch drugs, the effectiveness is greatly reduced. If that second set of chemicals doesn't work, you switch to yet another one, but each time, the studies seem to show that the effectiveness lessens — substantially.

So I'm sitting here knowing that the chemo I've been on has apparently worked on five of the tumors. But since one tumor broke through, should I give it up entirely and make the switch? I've asked my doctors about another way to approach it: Attack that one tumor with radiation. Kill it, if possible, then go on with the chemo that seems to work on the other tumors for as long as it continues to work. This is not the normal approach, and the doctors are talking it over. It has the advantage of killing that one tumor, and I hope thereby sending a message to the others. If you grow, you die.

None of us are prepared to make this kind of decision. Even the doctors don't know what will happen in each case. You sort of have to guess, take your best shot. The problem is if you guess wrong, it can send you down a spiral of worsening results.

I had tried to prepare myself for the real possibility of bad news before I had the scans, but that never really works. You still hope for good news. It's this in-between news — sort of bad, but could be worse — that is so difficult. When do we get to the easy questions?

Leroy Sievers

6:07 AM ET | 12-14-2006 | permalink | comments (22) | e-mail post

The Hectic Holiday Season

I'm making a list. Get the Christmas tree. And it has to be the right one. Shopping. More shopping. Fight your way through the post office. Find where you stored all the ornaments last year — that place you thought you'd never forget. Full body scan. As if the holidays weren't hectic enough, the normal parts of life with cancer continue as well.

I have to confess here that I am a procrastinator. You will see me out on Christmas Eve, doing that last-minute, panic-driven combat shopping. There are times when it all seems too much. Everyone always talks about how anxiety levels skyrocket during the holidays. So does depression.

Last Christmas was a very different holiday for me. I had just had brain surgery, and still had that line of staples up the side of my head. The world had shifted dramatically beneath my feet. The future was foggy and full of unknowns. And I'll never forget lying in my hospital bed as volunteers came down the halls singing Christmas carols.

This year is more normal. I'm still way behind on that list of things to do. But this year, I'll be able to go out and get the tree myself, rather than watching others do it like last year. I'm strong enough to brave the crowds myself. I won't be wearing a hat to hide that line of staples.

I love the holidays. It's a time of optimism and joy, and also a time for reflection. There's just something about sitting in front of the tree, staring at the lights and thinking about the things that are important to us.

But I also have to find time to get up to the hospital for blood work and that body scan. There are a lot of decisions to make: when to go back on chemo, whether I need radiation on my spine, and oh yeah, what do I get my mom and my sisters?

It's a crazy time, but one to be savored and enjoyed. It's also a time to remember those who are not having an easy time, those who are in the hospital this Christmas. Those for whom the phrase "tidings of joy" may have a very different meaning. So I'm going to enjoy this Christmas, but I'm not going to forget last Christmas either.

Leroy Sievers

6:09 AM ET | 12-13-2006 | permalink | comments (8) | e-mail post

An Unwelcome Guest in the Back of My Mind

Last week, a friend asked me how cancer patients manage to stay interested in the mundane things that make up day-to-day life. I wrote that cancer doesn't take away everything that we were before, every bit of our former life. We still hold on to the same interests and concerns. A man named Jeff wrote in to respond, and he took this issue to another level. His question wasn't how do you maintain some semblance of a normal life. He asked how you keep going at all:

"I'm wondering how you can have cancer and not be consumed by it every minute. How can cancer, which is constantly life threatening not have you running to the emergency room every minute because you don't know what's going on inside your body? How can you possibly relax and not get panic attacks every minute with the terrible things that can happen from cancer at any time?"

I am not consumed by the cancer all the time. It's not far from my mind ever, but I think that's different than being consumed by it. It's just in there. If I stop and think about it, I guess the fears and the concerns will come back pretty quickly, but most of the time, it's just sitting in the back of my mind like an unwelcome guest.

But no panic attacks. I'm not quite sure how to explain it. I guess we have all learned patience. We've had to. You just can't live in a constant state of crisis. The hospitals make you learn patience as well. There's time, and then there's hospital time, which can be different by several hours. You have to wait for test results, or for the experts to look at your scans. This is just not a situation where you can get immediate results. So as difficult as it can be, you just have to learn to wait.

I think if you give in to the panic, to the fears, to the unknown, then you give up your life. It's just not possible to live that way, and all of us do want to live. That means more than just surviving. It means trying to do the best we can to still live meaningful lives, lives that are rewarding, that count for something. I'd be lying if I said that all of us don't worry, become afraid or imagine the worst. We may even panic at times. But most days, there just isn't enough time for that kind of thing.

Leroy Sievers

6:27 AM ET | 12-12-2006 | permalink | comments (11) | e-mail post

A Year Unlike Any Other

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

I just had an anniversary of sorts. I was talking about this with a friend, and she said "anniversary" usually means a celebration of a happy event. That's not exactly the case for me.

A year ago I found out I had a brain tumor. The next morning came the rest of the bad news: tumors in my lungs. Now it seems like that happened a lifetime ago. But I remember that back then, I was reeling from all the news.

Brain tumor? That was something I'd never considered. Lung tumors? Could it get any worse? My world had been turned upside down. What a difference a year can make. The brain tumor is gone, although I can feel the metal screws that are still in my skull from the surgery. The lung tumors? A year of chemo, as difficult as that has been, seems to be doing some good.

I guess the biggest change I've felt in the last year has been psychological. What was shocking a year ago, what turned my life upside down, what I never thought I could get through — well, all that has become a normal part of life. This is not to say I don't have my down days, when I get depressed or sad. But cancer doesn't scare me anymore. Going into the chemo room, getting a CAT scan or an MRI, the side effects — all just normal activities for someone with cancer. Maybe some of the drama has gone away.

I'm not as panicked as I was a year ago. Back then, I worried about how many days I had left to live. That's still in the back of my mind, but it's not as urgent, not as powerful as before. I guess it's impossible to keep that kind of emotional intensity going for a year. The fear, the sadness and the stress can't go on forever. At some point, you just have to get back into the business of living your life, no matter how much it has changed.

So all in all, it's certainly been a year unlike any other. I'm the same person I was before, but I'm a completely different person, too, if that makes sense. And I wonder if I'll be here for the second anniversary. I'm planning on it.

Leroy Sievers

6:08 AM ET | 12-11-2006 | permalink | comments (15) | e-mail post

A Life More Complicated, but Not Overtaken

I needed help. I just couldn't come up with an idea for this blog today. So I turned to a friend of mine. I asked him if he had any questions about cancer that he hadn't asked me yet. And he came up with a pretty good one.

He wanted to know how I could stay interested in normal things. Why didn't I spend all my time thinking about my cancer? What else could possibly be as important? Doesn't everything else just seem totally inconsequential in comparison? And don't other people's problems seem less important?

OK, that's actually about four or five questions, but they're good ones. And I don't think the answers are that difficult. First off, my cancer isn't all-consuming. I'm sick. I know that. We're working on prolonging my life. Chemo isn't fun. That pretty much covers it right now. It's not the kind of thing that you can spend every waking minute on. Worrying, while it will fill some time, doesn't really help. I don't know exactly what's happening inside my body. But we do scans periodically to take a look.

Clearly, the cancer is the most important issue in my life right now. That doesn't mean it's the only important thing. I'm still interested in what's going on in the world. I still follow the news. I still follow sports, although all of my teams seem to be less than successful this year. I still have all the interests I did before. Cancer doesn't make them go away. I guess to some extent, they can be distractions. If I'm reading about Iraq, I'm not thinking about being sick. But life doesn't stop when you get cancer. It changes, certainly, but it doesn't take away all that you were before.

And maybe holding on to those interests, hobbies, whatever, is part of our way of fighting back. It's a way of telling those tumors that they haven't taken away everything, that they're not necessarily in charge.

I think one of the underlying assumptions to those questions is that once you get cancer, all the things that other people worry about become meaningless, even silly. Well, they don't. Whether it's politics or the weather or whatever, I still like to talk about those things with my friends. I want to tell them about my work and hear about theirs. I want to know what's on their minds because they're my friends. And I want them to know that I'm not interested in just talking about cancer. I am more than that — much more.

So I guess the answer to my friend is that cancer does not change everything. I'm still interested in the same things as before. My life has become more complicated — there are new things to know about, think about, worry about. But the disease has not pushed everything else out of my life to make room for itself. It's not always about me — but it's certainly not always about the cancer, either. I won't allow that to happen.

Leroy Sievers

5:57 AM ET | 12- 8-2006 | permalink | comments (20) | e-mail post

The Fears That Approach in the Dark

We've all been there. Those dark hours of the night when all the questions, the ones we push to the back of our mind during the day, come roaring back. What will happen? What about my family? Will it come back? Is it getting worse? And there are no answers, just those questions and our fears, echoing in the dark.

So when Margaret wrote in, I knew exactly what she was talking about:

"I had to write tonight to let you know what cancer has taken from me: my ability to sleep well at night.

"Cancer makes me feel vulnerable. I know beyond a shadow of a doubt that bad things can and do happen. My confidence of 'everything will be fine' is gone forever. I wish I could stop the thinking before bed."

What bothered me the most was when she said, "My confidence of 'everything will be fine' is gone forever." Bad things can and do happen; there's no question of that. The cancer has already robbed us of some things: our health, sometimes our jobs, friendships that can't stand the strain, belief in the future, a life free of pain. We have lost those things and more.

But there are some things that we need to fight to hold on to. Maybe the confidence that everything will be fine is gone forever, but that's true for a lot of people, whether they have cancer or not. Life can be tough. Everything won't always be fine. I would suggest that something else is more important to hold on to: the confidence that no matter what happens, we can deal with it. We'll get through it.

During those sleepless nights, it's important to remember that we can bear these burdens. We can get ourselves and those we care about through these difficult times. It's hard to turn off our minds, to keep from manufacturing new worries. All I would suggest to Margaret, to all of us, is that when the worries seem too big, we remind ourselves that we've already been through a lot. And we can get through a lot more. "Everything" may not be fine, but we will be.

Leroy Sievers

6:43 AM ET | 12- 7-2006 | permalink | comments (9) | e-mail post

Time to Return the Favor

It's Christmas time, and along with everything else, time to think about how we can give back. A woman named Irene wrote in to ask if there's a way to give — time or money — to research that may actually lead to a cure. And then there was this note from Laura:

"I was coming out of the grocery store, and donated to a Homeless American Veteran's Association. The Vet collecting funds told me he has cancer.

"If you could see the pain and heart break in this man? it was so sad, and I felt ashamed I could not drive him to UCLA or USC for free treatment. For those of us who have medical insurance, we should count our blessings (for as long as we can still pay for it)."

The key word here is "give." One of the great experiences of my life happened a year and a half ago down in Mississippi after Katrina. I was able to give a stuffed toy to a little girl whose family had lost everything in the storm. I will never forget the look on her face. Bringing that kind of joy to someone in need is within the grasp of all of us.

So at the risk of sounding preachy, here's what I will ask of all of you. Give to whomever you want. If there's a good research program that is doing good work, perfect. Toys for Tots? You bet. There are tens of thousands of Americans who need food, a place to stay. Children for whom a present on Christmas morning is a distant dream. We have the power to help.

So many people have given to us — their time, their skills, their compassion, their love. Sick or not, we are better off than so many others. Maybe it's cookies for the chemo nurses. Maybe it's just a hand on the shoulder of another patient. Maybe it's a dollar for the homeless man on the street corner. It's time to return the favor.

Leroy Sievers

6:29 AM ET | 12- 6-2006 | permalink | comments (10) | e-mail post

An Unexpected Break from Chemo

I'm off chemo — at least for now. This all happened last Friday. It turns out that the level of my blood platelets — the little thingies that make your blood clot — had dropped to the point that my doctors wanted me to stop the chemo a week early. This is a normal side effect of chemo — it's actually sort of a surprise that it didn't happen sooner.

So what does this mean? Short term, I'm starting to feel like a human being again. It takes a few days for the drugs to work themselves out of your system, but already I feel better. I was going to take a break when I finished this cycle anyway, so basically I just got to start a week early. That's the easy part.

What does it mean long term? We've talked before about my nervousness about taking a break. Right now, the chemo seems to be doing its job, and I'm nervous about giving the tumors a breather and time to regroup. I worry that it's a little like taking a timeout near the end of a game to give the other team time to rest. But I really had no choice. My body was pretty much yelling, "Time for a break!"

The larger question is the one we all know so well: quality versus quantity. The quality of my life is going to go up, at least in the short term. I already feel better. But in terms of quantity? Does every morning and evening I don't have to take those pills come at the cost of a shorter life? No one knows. No one ever will. But that's a trade-off I'm willing to make.

I don't know how long this break will last. It would be nice if I could go through the holidays without being on chemo, but that's a long time, and it would make me nervous. On the other hand, I have no great desire to open my presents Christmas morning while fighting off the nausea.

So there are big questions to ask, big decisions to make, but those things can wait a little while. For the time being, even if it's just a day or two, I just want to feel like myself. It feels good.

Leroy Sievers

6:40 AM ET | 12- 5-2006 | permalink | comments (16) | e-mail post

Dealing With the Changes Cancer Brings

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

I was on a radio call-in show last week to talk about having cancer and the My Cancer blog. The host asked a question that comes up pretty often: whether having cancer overshadows everything else in my life. I said no, but I've been thinking about that question ever since.

The first time I had cancer, I had surgery. It seemed to my doctors and me that I was done with cancer. I never used the term "survivor." While it was true, it wasn't my identity. Just a disease I had. I got it treated, and then moved on — like the measles or chicken pox when you're little.

This time it's different. This isn't a drive-by disease anymore. It's grabbed my life and it's holding on. I try to remind myself that I'm more than my disease. I have a career, although it may be more accurate these days to say, "had a career." The disease has changed my professional life. I can no longer do some of the things I used to. Many people would see that as an improvement, that I would no longer be going out into dangerous situations. To be honest? I miss it. But I'm still working as a journalist. I haven't lost that completely.

A year into my cancer, I still don't look sick. I still think of myself as the same person I was before. So all in all, I felt pretty secure in saying, "No," to the host of that show.

But now I'm not so sure.

Not a moment goes by that I don't have a physical reminder of the cancer. Whether it's the tingling in my hands and feet or the nausea from the chemo. Those things never go away. I can kid myself all I want, but the cancer is with me all the time.

I really wonder what's going through the minds of my friends. We can have conversations, go out to dinner and the disease never comes up. Now, this isn't meant as a criticism of my friends in any way. Quite the contrary. It's partly a testament to their friendship that they try to make it possible for me to forget and maybe for them to forget, too. But have they really forgotten it? I don't think so.

I think the things I can still accomplish come with a small caveat: "In spite of." In spite of having cancer, you look great. In spite of having cancer, you can still work.

As I try to work out this balance sheet — what cancer has taken and what it has left me — I guess the results are mixed. It's there, over my shoulder, lurking in the shadows all the time. I guess I have to come to terms with the fact that no matter how this turns out, whether I go into remission or suffer a setback, from now on, I will always be Leroy Sievers, cancer patient. That's just who I am.

Leroy Sievers

6:12 AM ET | 12- 4-2006 | permalink | comments (20) | e-mail post

Passed Into a Parallel Universe

I've been home for the last couple of days, fighting a cold. Chemo and a bad cold — not a good combination. But beyond that, I find myself in a special kind of hell: daytime TV. Truly a vast and empty wasteland. I have something like 300 channels on my cable system, and I swear, there's nothing to watch.

There are infomercials for all sorts of machines that will tone and stretch my body while making beef jerky. Every TV series ever made seems to still be on the air. And of course there's Law and Order. I have to stop myself from watching that. Why is it that no matter how many times you've seen an episode, you'll still stop and watch Law and Order?

But you know what else I noticed? We're not on TV. By "we," I mean cancer patients, of course. Granted, I haven't been watching soap operas. Maybe people on those shows get cancer all the time. But in terms of regular shows, I don't remember the last time I saw anyone with cancer. I was thinking about this because we had been talking about just how many of us there are.

Now, I'm not asking for equal time. I don't think TV characters should be getting cancer by the dozens, but it just doesn't seem to have a place in our entertainment world. And these days, we seem to judge the real world by what we see on TV. I was flipping around today and did find a movie in which Charlize Theron had a terminal illness. I assume it was cancer, I didn't watch long enough to tell. But she still looked fabulous.

There's not a huge point to make here. I don't think cancer patients should march on Hollywood demanding that more characters get sick. It just struck me that it's one more way that we have passed into that parallel universe. You can see just about anything on TV these days, but when was the last time you saw a character who just happened to have cancer?

Leroy Sievers

6:17 AM ET | 12- 1-2006 | permalink | comments (42) | e-mail post