The Challenge Friends Face

Our friends. We've talked a lot about them, how some know exactly what to say, while others don't. How some comfort us, and how others need us to tell them that everything will be OK. How some make us feel better with a single word or the tiniest gesture, while others end up pulling away, our cancer just too much for them.

A family member of a good friend of mine has recently suffered some major setbacks. Her cancer has spread. This time, I'm the friend. And I wish there was more I could say or do. I tell them how sorry I am; I offer to do anything they need. But when I say it, it just sounds so inadequate. I talk about cancer every day, and yet I find myself wishing that I had more to say.

I'm not an expert. I'm just another person trying to get through this strange new world. I guess it shows just how crazy Cancer World is when it's easier to be the patient. I can talk about my treatments, my feelings, my challenges, and I can relate to all of you who are on the same road. But when I try to comfort my friends, when I wish that I could lessen their fear or sadness, it doesn't seem like enough.

I am on the same road as my friend's loved one. Many of us are. I realize that as we struggle with cancer each day, those who have to stand and watch suffer just as much. I make my living by putting feelings and thoughts into words. But in the end all I can think of to say is this: "I'm your friend, and I'm sorry." I hope that's enough. I hope that helps.

Leroy Sievers

6:54 AM ET | 05-31-2007 | permalink | comments (53) | e-mail post

Adding Insult to Injury

I'm one of the lucky ones. I have health insurance. That doesn't mean it's not frustrating at times. The statements can appear to be written in a foreign language. And if there's a problem, getting to a real person can take up most of a day. Some companies have a new voicemail system, a woman who, I guess, is supposed to sound like a real person having a real conversation. It's really annoying, not to mention that, in spite of her mechanical friendliness, the options you're offered are never the ones you need.

But all these petty annoyances pale in comparison to the real problem. Being treated for cancer is expensive, very expensive. Without insurance, I couldn't pay for it. Some numbers: $80 per pill, a procedure that may cost $15,000, or more. Whether those prices are valid is a whole different issue. For the time being, those are the prices that are charged.

Even with insurance, the costs that the patient pays can be a hardship. Insurance doesn't cover everything. The co-payments, the deductibles, the uncovered items, can bleed you like slow torture.

If you don't have insurance? Cancer takes your health, but it can also take your job. That can mean no insurance. Or what if the care you need is in another city, or another state? Can you afford to move? If you don't have insurance, are you sentenced to death, knowing that the treatments to help you exist, and you just don't have access to them?

There's truly something wrong when how much money you have determines whether you're given the most advanced treatments, or whether you're treated at all. It would be nice to think that this country could come up with a system that would allow patients just to concentrate on trying to get better, a system that would not bleed them, or their families.

It's tough enough being sick. You shouldn't have to worry about bills, or leaving your family in debt. You shouldn't have to choose between treatments that you need, to decide which one you can pay for and which one you'll have to forego.

The fact that the system adds insult to injury is just plain wrong. We, as a country, should be ashamed.

Leroy Sievers

6:45 AM ET | 05-30-2007 | permalink | comments (81) | e-mail post

The People We See Every Day

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

I have lived a rich life. But I think I'm going to be remembered for two things. I produced a broadcast called "The Fallen." And I have cancer.

I was the executive producer of Nightline, and we wanted to somehow honor the American soldiers who had died in Iraq . In the end, "The Fallen" was a very simple program. Ted Koppel read the names of the dead while their pictures appeared on the screen. It was controversial at the time. But now similar tributes have become routine. Some of the same newspapers that condemned us then now regularly show the faces of those who've paid the ultimate price. Which is right because, in the end, it's not about politics. It's about those men and women.

It's hard to make sense of a whole page of photos, each one representing a life cut short. You scan down each row, and your eye will catch one picture or another. A smile that speaks of mischief. Eyes that show knowledge far beyond their years. Or a face that's so young, full of so much promise and hope, and empty of knowledge of what is to come.

Our broadcast was not original. I'm old enough to remember an issue of Life magazine from the 60s which showed the faces of all the soldiers who died in Vietnam in one week. Those images were the inspiration for our program. I remember looking at the faces and having the same reaction. Here was a cross-section of Americans who, tragically, only had one thing in common.

If "The Fallen" was something I did, my cancer is simply something that happened to me. I got a disease. I have to admit, I usually don't read articles about cancer. It eats up enough of my life as it is. But last week's issue of New York Magazine did something both remarkable and familiar. Two pages of faces -- young, old, racially diverse -- all faces of people who have cancer.

The magazine listed their names, ages, and what type of cancer they had or have. I have to admit I didn't pay much attention to all that. I scanned down the rows of photos and the same thing happened. My eyes would lock on one picture. A little four-year-old girl, what was she doing there? Faces that looked totally normal, as of course they should. The pain doesn't always show on the outside. And some faces with a look of total fatigue, a look we all know so well. A look I've seen in the mirror.

You realize something when you look at these photos of the dead from far-off wars, and the wounded from a war fought every day here at home. They're the people we see every day. The people we live with. The people we pass on the street. They are us.

I look at the pictures of the dead in Iraq and remember what it was like over there. I remember my friends, not all of whom came home. I look at the pictures of the people with cancer, and I see myself.

Leroy Sievers

7:38 AM ET | 05-29-2007 | permalink | comments (37) | e-mail post

Can You Be at Peace with Your Cancer?

Two notes came in yesterday that I think are related. This is from Christine:

I recall reading once you saying that you were at peace with cancer. As one who has been dealing with cancer for two years, I am still struggling about finding peace which I read about so often. How does one find this so-called "peace?" What is the process? And how does one know that one is truly at peace? To me, accepting the situation and preparing for the end of possibilities does not bring peace of mind. Is there something more?

And this is from Phyllis:

I want to be able to laugh and be determined to live my life on my terms, but I am not there yet. All I have heard since they said, "You have cancer," is a loop playing over and over in my head, "cancer, cancer, cancer, cancer." I am so unhappy and afraid that I haven't even allowed myself to think of what I am unhappy about or scared of. Am I sad at the thought of losing hair that grew to my shoulders for the first time in my 54 years? Or am I afraid of dying and leaving the love of my life who I only just found a few years ago?

I think it has always bothered people, certainly the people close to me, when I've said that I'm at peace with my situation. That doesn't mean I'm ready or eager to die. Quite the opposite. There is still so much I want to do. I think many cancer patients feel cheated, that we are being robbed of life. I think that's true. I feel that way about the days I lost to chemo, when I felt so sick I really couldn't do much of anything. I could have done so much more with those days if I'd had the chance.

But I think everyone pretty much feels that way about dying. No matter when it comes, it comes too soon. Whether their lives are cut short by cancer or whether they live well into their 90s, I think most people still have things they want to do. Even if it's just wake up and see one more sunrise.

When I say that I found peace, I think I mean that I found a way to get rid of my anger. I don't have the time for it, quite honestly. I think I've had a pretty good life. I know I have made mistakes, a lot of them. I know I have hurt people, and I haven't always been the person I tried to be. But overall, I think I've been hugely fortunate. I've led a rich life. And I hope to live a lot longer. But if my life is cut short by cancer, or anything else for that matter, I guess I can accept it. After all, we aren't really given a choice.

So my answer to Christine is that I can't really tell you how to go out and find peace. I think you have to let it happen. And Phyllis, it's too easy for me to say, "Don't be scared." We're all scared. But if you can, try to set your fear aside for one day and treasure the love you have found, and the life you have. And then do it again the next day. That, to me, is a life well-lived. That, to me, is peace.

There won't be a new blog entry on Monday because of the holiday. But there will be a new podcast on Tuesday.

Leroy Sievers

6:59 AM ET | 05-25-2007 | permalink | comments (80) | e-mail post

Google Knows Cancer

OK, I was desperate. Well, maybe more frustrated than desperate. I couldn't think of a topic for today. I know that probably seems silly, given that there is so much to talk about. I tried all my old tricks. I walked around. Read a novel for a while. Read and reread your comments from the last couple of days. Nothing came to me.

So I sat back down at my computer and went to Google and just put in "cancer." It came back with 271,000,000 hits. Now, to be honest, some of those were astrology sites, the latest horoscopes for Cancers. I saw one about the constellation Cancer. But all the others were about the disease. At least I assume so, I only went through a couple of pages.

There was all sorts of stuff. Diets, symptoms, support groups, articles about children and cancer, articles for children with cancer. There were Frequently Asked Questions; I think we all know what those are. It was overwhelming, actually. Cancerpalooza. There was one titled "Just diagnosed with cancer? Talk to our experts." That seemed a little too cheerful for what is most likely the worst experience in most patients' lives. Lots of sites for cancer clinics.

The best slogan I've seen about cancer is very simple. "Cancer sucks." I have a T-shirt from Johns Hopkins that says that. Unfortunately they were out of coffee mugs the day I visited the store. Someone in the audience of the town meeting a few weeks back gave me a rubber bracelet, purple, with "Cancer sucks" on it. I want to thank whoever is making those. I plugged "Cancer sucks" into Google. I didn't expect much. But I was wrong: 1,420,000 hits. A lot of merchandise, and many of the pages I scanned were personal blogs. I felt better after seeing all that. Somehow it???s comforting to think that so many people are still defiant and feisty enough to say, whether to themselves or out loud, "Cancer sucks."

I never would have looked at any of that before I was diagnosed. After all, cancer was something that happened to other people. These days I really have no desire to read more about cancer. I already know enough about it, maybe too much. And as cute as the merchandise was, I don't think I need any more. So I typed in "cancer cure." The result: 12,900,000 hits. There were some pages promoting new or secret or suppressed "cures." Most were about trying to find a cure, or encouraging others to find a cure, or to help pay for finding a cure. But with all of the power of Google, the only one that I think any of us really wants to read wasn't there: "We found the cure." I wonder if we'll ever see it.

Leroy Sievers

7:28 AM ET | 05-24-2007 | permalink | comments (62) | e-mail post

Pulling for the People in the Basement

"Hang on as long as you can, you never know when a breakthrough will happen." How many times have we heard that? There are new treatments, new drugs, new procedures being developed every day. In a basement somewhere, someone is working on something that will be truly revolutionary. Maybe even a cure. At least I like to think so. More accurately, I hope so.

There have been huge advances. The drugs that many of us have taken didn't exist a few years ago. New treatments bring new hope. That's what Radio Frequency Ablation has done for me. Before the Living With Cancer documentary ran on Discovery, the doctor who performed the RFA on me said they had put on extra phone lines and people to answer them. They expected to be bombarded with questions about RFA. And that's what has happened. I spoke to one of the nurses the other day, and she said they can tell each time the program is rerun, because the phone calls pour in.

We're all looking for something that might defeat the monster, or at least slow it down. Unfortunately, that hope can turn to disappointment. A new drug or procedure won't work in every case. That same nurse said they've had to tell many patients that they just aren't eligible for RFA. It will only work if the tumors are below a certain size, and only in certain parts of the body.

I think the key is to keep asking, keep searching. Ask your doctors questions. Because they are as desperate to find a new weapon as you are. And then it all comes down to that one difficult question. Should I try it? When I decided to go ahead with the RFA, I felt I had nothing to lose. My case was not going well, the cancer had broken through the chemo, and the next set of drugs promised more side effects, but less effectiveness. So to me it made sense to take a gamble, attack the existing tumors one at a time, rather than attacking all the cancer at once. So far, it's worked. But that only happened after long conversations, brainstorming really, with my medical team.

I guess the key is just to keep asking, searching, questioning. In the end, what happens to us is up to us. And in the meantime, I just hope those people working in that basement will hurry up.

Leroy Sievers

6:23 AM ET | 05-23-2007 | permalink | comments (46) | e-mail post

Caring Can Be the Toughest Part

A good friend of mine is leaving for Afghanistan today. He's in the Army and he'll be there for 15 months. And I'm worried about him. I've seen him in combat; he's good at his job. But I still worry. People who go off to war know a secret. It's easier to go than stay at home. Once you're there, you know what's happening. The people you leave behind can only worry. And then worry some more.

Years ago, when the U.S. was bombing Serbia, I went to the airbase in Italy where the planes were based. In most wars, the families stay at home, usually thousands of miles from the front. But in this case, the pilots had brought their families with them. Who wouldn't want to live in Italy? I don't think they ever thought they'd be flying combat missions from there.

In a twisted version of a normal day, each morning the pilots would go to work. A little later, their families would hear the roar of the jet engines as their husbands and fathers streaked towards hostile skies. Then for the rest of the day, those families would have to try to pretend to live a normal life, all the while straining to hear the sound of the jets returning. When they finally did, after hours that must have seemed like weeks, there was always that fear. Did they all come back? And then the next day, they'd have to go through it all over again. It was torture.

I think that's not too different from what caregivers go through every day. Each day they have to live with that same fear, waiting through a surgery, or watching a loved one going through the agony of chemo. Will they make it through the day? And what about tomorrow? I've talked about the burdens that cancer patients bear. But the burdens carried by those who care for, and about, them may be almost too much. Quite honestly, not everyone can handle it. Too many of you have written in about family members or friends who turn away, who refuse to help, or who just can't take it. As painful as that is, we just have to recognize that not everyone is up to it.

So I'm going to worry about my friend in Afghanistan. I'm going to think about his wife, who will have to live with her fears every day for the next 15 months. And I'm going to remind myself that being in combat isn't always the toughest part of being in a war.

Leroy Sievers

7:25 AM ET | 05-22-2007 | permalink | comments (65) | e-mail post

There's Never Enough Time

"How long?" Karen wrote in last week to say that question was eating away at her. Before I was diagnosed, I never really thought about that. Oh, I guess maybe it popped into my head every once in a while, but never seriously. I assumed I had lots of time left, probably a couple of decades. There would be time enough to think about that when the time came.

But when the doctor told me, "We've found something," it was the first question I asked. The clock had started to run. Except that I don't know the answer any more than I did before my world changed. I certainly have a pretty good idea of what's going to cause it, but the time frame? That's shifting constantly.

What if we did know, or had a pretty good idea? What then? Is that the time to start saying those things we should have been saying all along? Time to maybe go crazy? Drive a little faster than we should? Order the supersize fries? Run up our credit card bills assuming that we won't be around to pay? There's the old saying, "Life is what happens while you're making plans." I would paraphrase that a little and say, "Life is what happens while we're worrying about 'How long?'"

Now talk is cheap. It's easy for me to sit here and say, "Don't worry about it, don't let it eat you up." But I do know better. It's hard, very hard, to push that fear out of your mind. To stop asking that question. Small things can stab you in the heart. Friends planning a wedding that you know you may not be around for. Projects you have to start planning to hand off to someone else, just in case. That movie you're dying to see, but which may not be released for another two years.

You have to find a way to come to peace with it, or it really will ruin your life. Or, certainly, run your life. We'd feel those same things if we knew we had one year, or 20 years, to live. There's never enough time.

Maybe the best response, actually one of the best lines I've heard in a long time, was the last line in Karen's note. "There is no vacation from cancer," she wrote. "However if it's going to come along with us, the least we can do is show it a good time." That made me laugh. But I'll be damned if cancer's going to get a window seat, and it had better not start asking "Are we there yet?" The answer to that is "no."

The My Cancer podcast that normally appears on Mondays will return on Tuesday, May 29.

Leroy Sievers

7:00 AM ET | 05-21-2007 | permalink | comments (57) | e-mail post

A Trip Back in Time

So my Hawaii vacation is almost over. This will be the last of the blogs written from my balcony. The whales have all left Hawaii, so I guess it's time for me to leave, too. It's been a great trip, a time to sort of catch my breath, relax a little, and certainly eat and drink too much.

I used to come here a lot, about once a year. It's a long flight from the East Coast, a good 12 hours or so. But I always thought it was worth it. Coming here was a chance to get away. Turn off the TV, only read the silly parts of the newspaper. Leave everything else behind. That stopped when I was diagnosed. Oh, the need to get away was probably stronger than ever, but it just wasn't possible. Until now.

So what have I gotten out of this trip? Probably a few extra pounds, but it is vacation after all. I read a couple of great books, got a tan, the usual stuff. What I really enjoyed was that it was a quick window back into my old life. Before cancer. Like I said the other day, I don't stop thinking about my cancer, of course. But this has been a trip back in time. I could almost fool myself into thinking that the last couple of years hadn't happened. The Hawaiian air will do that to you.

So I'll head back home, as the saying goes, tanned, rested, and I guess ready for the next part of this adventure. This trip was just like my earlier ones, but I think that this time, the mai tais may have tasted just a little bit sweeter.

Leroy Sievers

7:01 AM ET | 05-18-2007 | permalink | comments (55) | e-mail post

The Right Thing to Do

"Why" That's the most common question I got when I told people I was going to keep writing the blog on vacation. One person wrote in the other day sort of blaming NPR, and asking that they give me a break. But this was my decision, no one was forcing me. In fact, my editors, the others who work with me on all this, suggested the same thing. So why do it?

Well, for one, I'm still on East Coast time, so I wake up pretty early. I take my computer out to the balcony, stare at the ocean while the sun is coming up, and write. This is not hardship duty. It really calms me and helps me gather my thoughts.

And I thought that effectively shutting this site down for two weeks would be a bad idea. We have a conversation going, an amazing dialogue, and I didn't want to do anything to slow that down.

There's a larger reason too. Cancer is something we live with every day. As lucky as I am to be on vacation, I still think about it all the time. Sometimes it just jumps into my mind like an annoying pop-up ad. Other times, something will trigger it. At the pool the other day, I saw a woman with very short hair. She hadn't cut it that way for fashion, it was clear that she had been on chemo. I wondered what her story was, but I was glad that she was in Hawaii too.

There's a conversation that I think everyone has when they come to Hawaii, or some place comparable. We may not even say it out loud: if we sold the house, the cars, quit our jobs, why couldn't we just move here? It's fun to think about it, and every once in a while you run into someone who's done it. So it really is possible, it's not just a mai tai-fuelled fantasy. But sometimes when I'm planning the move, the question, "But for how long?" elbows its way in. You know what I mean. Not, "How long could I stand to live on an island/" That one's easy. No, it's, "How long do I really have?" I try not to think about that one too much, not let it rule my life, but it's out there.

So this really was my decision. No one coerced me. Since we live with this monster every day, one way or the other, I thought I needed to face it every day, too. It just seemed like the right thing to do.

Leroy Sievers

6:27 AM ET | 05-17-2007 | permalink | comments (70) | e-mail post

We Are Your Family, Too

I was reading all of your notes the other day, and found this one from Anonymous:

My husband has refused to ask me about my last CT scan; he knows I had one and he knows I haven't felt well since before Christmas. I've got breast cancer mets and he's not asking or talking. I feel so much hurt and resentment about this. I want to talk and make some "plans" and get that out of the way and then I want to LIVE until I die!!!

And it broke my heart. I think you all know how I feel about speaking out about this disease. It's a right, and sometimes an obligation. The most important reason we need to share is that we can't go through this alone, in silence. No one can. We need to be able to say, "I feel lousy today." Or, "I need help." And most importantly, "I'm scared."

The other people in our lives, those who are close to us, and even those we know less well, need to be able to speak as well. They have questions they're probably afraid to ask. They have their own fears, their own loneliness, that they're afraid to burden us with.

It all comes down to one thing: concern for each other. That's what love is. And so to Anonymous, I wouldn't presume to offer you advice on how to relate to your husband. That's certainly not my place. But this site is a place where you can talk about it, where you can talk about making plans. This is a place where we understand. We are your family, too.

So I just have one thing to ask of you. Tell us how you're doing.

Leroy Sievers

6:26 AM ET | 05-16-2007 | permalink | comments (77) | e-mail post

The Burdens We Can Bear

"We're given the burdens we can bear." I use that phrase a lot. I've found some comfort in it. John wrote in last week, though, to say that it was not true. In fact, he said it was a lie. Not everyone can bear the burdens they are given, people are often destroyed by them, he said.

I think in some ways we're talking about language here. And as we've talked about before, the words we use are so important.

Many people don't like to say we're "fighting" cancer. They believe it implies that if and when we succumb to the disease, we have somehow "lost the fight," have somehow been found weak or unworthy. Nothing could be further from the truth. For the same reasons, I disagree with John. Our "fights," or the degree to which we can bear our burdens, are not judged only at the end. At the finish line. We all know we're going to die. Most of us expect that in some way the cancer will be the cause. What I'm talking about is what we do before that time.

I'm not wild about using "fight" either, though sometimes I say it out of habit, or without thinking. But when I say "fight," I think I really mean "live." Just getting through another day, even if all you feel up to is sitting on the couch and maybe watching TV -- that's a triumph. When I say we're given the burdens we can bear, I think that's true even if we can only carry those loads for a month, a week, a day. Sometimes we wish we could lay those burdens down just for a short while and rest. Others try to help carry the load, if only for a time. And there will come a time, sometimes sooner, sometimes later, when we have to lay our burdens down once and for all.

In those minutes or hours or days that we're able to carry the weight of this disease, that's when life happens. I know that, in the end, my burdens will become too heavy. But I don't see that as a failure. This isn't a contest or a race. We're not being judged against the actions of others. I think there's really only one thing I'm hoping for. When that time comes, I hope I can say, "I did my best." Then I'll know that I won my "fight," that I was able to bear my burdens. That's enough.

Leroy Sievers

6:55 AM ET | 05-15-2007 | permalink | comments (58) | e-mail post

A Question of Appearances

Being on television has a way of puncturing your vanity. I look like that? Really? I think in our own minds, and in the absence of mirrors, we all think that we look the way we did in our twenties or thirties. Holding onto that self-image is even more important for those facing cancer. If you have lost your hair, or have a rash, or just have that total fatigue that speaks through your eyes, it's hard to look in a mirror and recognize yourself. It's hard to say: "I look pretty good."

After the town meeting on the Discovery Channel last week, a number of people said the same thing. Everyone looked too good. If you saw Elizabeth Edwards, Lance Armstrong and me, your first thought would not be: "They have, or had, cancer." Looking around the audience, everyone looked pretty good. There were very few people that you would pick out as cancer patients. Now, part of the reason for that was that people had to be healthy enough to come to the town meeting.

But leading up to the program, Ted Koppel, in particular, wondered if we were sending the wrong message. If everyone on the program looked healthy, what would we be saying to all those whose appearances had been changed by the disease or by the treatments? Were we saying that having cancer was no big deal? Would seeing people who have cancer, but who still looked pretty much the way they always have, be encouraging or discouraging to other patients?

I don't know the answers to those questions. I've been pretty lucky so far. My appearance hasn't really changed. I notice the changes, but most people don't. The next round of chemo that I was considering would have changed all that. But in the end, I decided not to go that way. And I have to admit that what those drugs would have done to me and the way I look was one of the things I considered in making that decision.

Aside from vanity, I think one of the reasons we still worry about how we look is that we still want to belong to the old world. We don't want to be separated again. We all know the looks you get as you walk down a corridor pulling your chemo machine with you, or as you are wheeled by on a gurney, or as you put on your head scarf. People look at us with a combination of pity, curiosity, and relief. Relief that what has happened to us hasn't happened to them, or their loved ones. The look is usually involuntary, I think. It's not meant to be cruel. People can't help it. There are times when I wish I wasn't wearing my hospital wrist band, when I wish I could just walk down the corridors and people would think I was a family member on a visit, or maybe that I worked at the hospital.

This monster ravages the inside of our bodies. I guess it just seems unfair that it can do the same thing to the outsides as well. But who ever said this was fair?

Leroy Sievers

7:02 AM ET | 05-14-2007 | permalink | comments (70) | e-mail post

Facing Our Fears

I was going back and reading all the comments that you have sent in. I do read them all. And I saw this note from Susan. She has had surgery for two brain tumors. The cancer had metastasized from her lungs.

I know not who I am or why this is happening. There seems to be a space between life and death that takes on a form of its own, but I am just now walking through that gate. I am very, very scared.

I know that fear. We all know that fear. I wish there was an easy way to make the fear lose its power. A few magic words that would take care of it. But if those words exist, I don't know them. I can say that over time, the fear will lessen a little. But it won't go away. I don't think it ever really goes away.

What is it that we are afraid of? Death? Certainly. But I think what is also scary is the loss of our old lives ... who we were, what we could do. The loss of things that we took for granted. New things take their place, of course. New knowledge, new friends, really a new life. But I don't know that we ever fully come to terms with the loss of who and what we were.

Susan's right. There is a gate, and once you pass through it, you can really never go back. But at the risk of sounding corny, isn't that what life is all about anyway? We pass through countless doors. Our lives change constantly, in ways big and small.

I have found comfort in a saying that I think about a lot. We are not given the burdens we deserve, we are given the burdens we can bear. My message to Susan, and to all of you, and to myself, is that we are stronger than we think. We can bear these burdens.

Leroy Sievers

6:43 AM ET | 05-11-2007 | permalink | comments (89) | e-mail post

Wish You Were Here

This is probably going to sound a little silly, but I feel guilty being here. I love Hawaii; it's probably my favorite place on earth. The ocean speaks, and soothes, in a way that nothing else can. I know how lucky I truly am. Not just to be here in a beautiful spot, but just to be here at all.

But as I sit here writing, it's hard for me to stop thinking about all of you who are having a tough day, sitting in the chemo room, the radiation room or just at home, which, in spite of the familiar comforts, can seem so lonely sometimes. I know what you are all going through. And yet I'm not going through it, at least for now, and that feels strange to me. I feel like I have stepped at least partway out of Cancer World.

Of course, it's always on my mind. I've run into some old friends already, and they've all said, "It's great to see you here." Of course, that sentence can be read in a couple of different ways, and they mean them all. So what am I feeling? Survivor's guilt? That's part of it, certainly.

I guess I wish that all of you could sit here with me, could feel the peace I feel right now. I wish you could hear the steady rumble of the waves, drowning out the steady drip of the chemo machines. That the only radiation bombarding your body came from the sun. And that instead of loneliness, you felt relaxation.

Maybe all I should say is that old reliable line that goes on almost every postcard. Having a great time. Wish you were here.

Leroy Sievers

6:22 AM ET | 05-10-2007 | permalink | comments (74) | e-mail post

The Joy of Flight

I used to travel a lot. Sometimes I'd be on the road at least six months out of the year. And I loved it. And that didn't count vacations. Early in my career as a journalist, I used to take what I considered adventure vacations: safaris in Kenya, visits to China and Tibet. But as I traveled more and more for work, and as those trips became more "adventurous," my idea of a vacation changed. I wanted to just go and relax. I think the high point, or low, depending on your view, was when we went to a hotel on the Big Island of Hawaii. Each lounge chair by the pool had a little plastic flag on it. If you wanted a drink, you just put up the flag. You didn't even have to raise your hand. That was about as far from adventure as you could get.

Of course, all of that changed about a year and a half ago when we found the cancer. I kept working during most of the time that I was being treated. I even made a couple of day trips. But that was about it for travel. Unless of course you count the drive up to Baltimore to Johns Hopkins for chemo, or scans, or radiation or whatever. If only I could have gotten bonus miles for those trips.

I used to savor the plane trips on the way to a story. Usually that would be the last chance for a decent meal. And yes, given where we were usually going, airplane food actually counted as a decent meal. The last chance for a drink. The last real bathroom you might see for weeks. It was the calm before the storm. And it was also the last time that it would be quiet. No more phone calls, no more e-mails. All the planning that could be done, had been done.

I'm writing this on the plane, on the first vacation, the first real trip, I've been able to take. I realize that I've lost a lot of my old habits. I used to be able to pack in my sleep. Now I have to think about it. But I have to admit that it sort of feels good to be back on the road again. It's a little piece of my old life that I've been able to regain.

I'm looking forward to doing a lot of nothing on this vacation. I've brought a couple of good mysteries, and I plan on sitting by the pool and just relaxing. Quite honestly, over this last year and a half, I've had enough adventure. But I'm pretty sure that they got rid of those little flags on the lounge chairs. Oh well.

Leroy Sievers is on vacation. He'll update his blog occasionally while he's away.

Leroy Sievers

6:21 AM ET | 05- 9-2007 | permalink | comments (47) | e-mail post

I Couldn't Think of Better Company

Well, my time on TV is over. I am so relieved. The documentary aired on the Discovery Channel on Sunday, and then we did the live town meeting. Luckily, the time flew by. But I was struck by one thing in particular: The audience included doctors and nurses, people from various health and cancer organizations and family members, but the overwhelming majority were cancer patients.

Sitting up on the stage, we were only a few feet from the audience. And the room was lit brightly enough that we could see everyone in the audience. And so I was able to look around. And I was struck by the diversity of the people sitting around us: All different races. Some elderly people. More middle aged. More young people than I expected.

And for the most part, you couldn't tell that they were sick or had been sick. It could have been a crowd at a movie or a game or a play. If you had just gathered in a random crowd off the street, it probably would have looked the same. And maybe that's what we are, a random crowd, all united by one thing: a disease that seems to strike indiscriminately. No one is safe; no one is immune.

Almost everyone in that room has been through hell at some point or they are still going through it or are trying to help a loved one through it. People often talk about "Cancer World" being the club that no one wants to join, and that's certainly true. But I have to say, sitting with all of the members the other night, if I had to go through this, I couldn't think of better company.

As you read this, I'm on a plane, and I'll be writing tomorrow from Hawaii. And I'll say this once again: No, I'm not going there to die. This is just vacation.

Leroy Sievers

6:07 AM ET | 05- 8-2007 | permalink | comments (103) | e-mail post

Hawaii: It's Just a Vacation, Really!

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

I'm going on vacation. Going to Hawaii, one of my favorite places in the world. Ordinarily, when you tell people something like that, they all say how great it is. But this time, when I told my friends, there have been some awkward silences. I have to quickly say, "No, I'm not dying." I'd better explain.

When I was first diagnosed, I told my doctors I didn't want to die in a hospital, connected to machines and with tubes coming out of me. My plan was to go to Hawaii and drink mai tais until the end. I made my doctors promise to tell me when it was time for me to go to Hawaii. It may sound silly, but this was a serious conversation.

Now there was one hole in my plan that I never quite worked out. What if I timed it wrong? What if I went to Hawaii and then survived for weeks ... or months? Then I would just become "that old drunk that sits out by the pool." I still haven't figured that part out yet.

So it came as a shock earlier this year, when my doctor suggested it was time to go. He quickly added that it was not because my death was imminent. It wasn't. But my case was going badly. The chemo had failed, the tumors had grown and spread, and we were starting to talk about getting my affairs in order, as they say. It was unlikely that I would survive past the summer, let alone to the end of the year.

He felt that at the time of that conversation, I was probably feeling as good as I was going to feel. And so it would be a good time for Hawaii. One last vacation while I could enjoy it.

Well, a lot has changed since then. Through radiation and a relatively new procedure called radio frequency ablation, we have managed to kill the tumors we knew about. My recent scans have been clean. And while I'm always quick to add that I'm not cured, that it's pretty certain the cancer is in there somewhere, right now I'm in pretty good shape. I'm in a place where I never thought I'd be.

So this is going to be a real vacation, the first one since this ordeal began. I can't wait. I do own several Hawaiian shirts. But I like to think that, as Hawaiian shirts go, they're not too bad. When I was at Nightline, I actually instituted Hawaiian Shirt Fridays, a step beyond Casual Fridays. That may be one reason I'm no longer there.

But I'm going over there not because it's the last trip I'm going to make. No, I'm going over there just like the thousands of tourists who go every week. To get away for a little while. And that first Mai Tai? It's going to be sweet. And, oh yeah, I am going to continue to write the blog from over there ... but I think I'll write early in the day. Before it's mai tai time.

Leroy Sievers

6:03 AM ET | 05- 7-2007 | permalink | comments (208) | e-mail post

What if I Had Never Had Cancer?

I had my car in for service this morning, and I was sitting in the waiting room. The TV was on. But I wasn't paying attention until Morgan Freeman came on and started talking about colon cancer. He was urging people to have colonoscopies and said that colon cancer is one of the most treatable cancers, if caught early. Absolutely right.

And that made me think about something that I rarely consider. What if? What if I had gone for a colonoscopy as soon as I realized that it ran in my family? Instead, I waited more than five years.

If I had gone in earlier, instead of seeing the frozen face of my doctor that told me immediately that I had cancer, would he have been smiling? Would he have told me that they found some polyps, but had removed them before they could become malignant?

I usually don't dwell on the past, there's not much reason to. But what if? It's like wondering how your life would be different if you left your house five minutes earlier, or later, today. We make a million different decisions every day, some large, most small. But they all help determine the path we follow. Change one, and who knows how our lives would change? That's long been fodder for science fiction.

So I'm going to indulge myself, just this once, and stick with that question: what if? If I had never had cancer, who would I be? What would I be doing? I certainly wouldn't be writing this blog. I probably wouldn't have spent any time thinking about the things that we talk about here every day, and my life would have been poorer for that. "Who would I be?" is a little tougher to answer.

We often talk about the things we have learned from cancer, the things we have gained. It's always strange to say that there have been benefits, some positive things, but there have been. I am who I am right now, to a large degree, because of my cancer. It's been a high price to pay, no question. But I think that I am a better person than I was. My body may not be all that happy when I say that, but it's true. I am not happy that I have had to go through this, that my friends and family have had to suffer too. But I am grateful for what it has taught me. I really don't know how to reconcile all this. But now I guess I have to decide whether to leave the house now ... or five minutes from now.

Leroy Sievers

5:12 AM ET | 05- 4-2007 | permalink | comments (94) | e-mail post

The Specter of Our Own Deaths

There's really only one thing that's tougher to talk about than cancer, and that's death. As we have talked about on this blog before, death is the elephant in the room. When we say we're fighting cancer, coping with it or trying to live with it, really what we're talking about is the specter of our own deaths.

Jane wrote in the other day to say how difficult it is to talk about, and she wondered if we're not in a state of denial. I don't think so. I think every cancer patient knows what this is really all about. Of course, everyone knows that they're going to die. But for most people, that's something way off in the future. When you're young, you're invincible. You think it may not happen to you, and certainly not because of all of the really stupid things we do when we're just starting our lives. As you get older, death comes for other generations -- our grandparents and ultimately our parents.

And then there comes the time when it starts to sink in that it happens to us: friends, people our age. We can no longer ignore it. But I think each of us hoped that death would come for us when we're much older. We believed that we still had a lot of time.

Well, cancer changes all of that, of course. Predictions of our deaths are laid out not in decades, but in years and even months. Death is always in the room, sometimes sitting quietly in the corner, sometimes getting right in our faces. I think the biggest thing that separates us from the people who don't live in cancer world is not the pain, not the treatments, not the fear or sadness. It's that we have a pretty good idea of what's going to kill us, and a pretty good idea of when that might happen. Some of the mystery is taken away.

That doesn't mean that we should give in to hopelessness. Quite the contrary, I think it just means that for us, death is more a part of our daily lives. But as Hunter Thompson said, "Buy the ticket and take the ride." The ride is no fun if there's no risk, if there's no danger -- even if it's an illusion of danger. But that doesn't mean we shouldn't take our hands off the safety rail, hold them above our heads and scream like crazy. What have we got to lose?

Leroy Sievers

5:42 AM ET | 05- 3-2007 | permalink | comments (44) | e-mail post

A Daily Reminder That We're Not Alone

I've been doing a lot of radio interviews about the Discovery Channel documentary. And almost every one of the anchors asks me the same question: "What do you get out of writing the blog?" I think many of them expect me to say that it's cathartic, that it helps me to talk about it. But that's not really the way I feel, and it's not the answer I give.

There are times when we can forget that we have cancer. Sometimes they only last for a moment, other times for hours. And I came to treasure those times. But writing the blog forces me to stop each day and think about my cancer. To think about where I am today, how I feel, what's the latest and just what's on my mind. It forces me to focus on my cancer whether I want to or not. Now, that's not a complaint at all. I actually think it's good to stop and think, to reflect on today. It's too easy sometimes to get caught up in all of the little things that make up our daily lives.

Obviously, I'm not bashful about talking about cancer. It's a little too late for that. As I continue to do this, it becomes easier. It's a conversation with friends. And all of you bring up ideas that I had never thought of.

But I do have an answer to that question, "What do you get out of writing the blog?": A daily reminder that none of us walks this road alone. What could be better than that?

Leroy Sievers

6:19 AM ET | 05- 2-2007 | permalink | comments (31) | e-mail post

Why Is Cancer News?

I was talking with a friend of mine the other day about the upcoming documentary. He asked me, "Why is this news?" When I was producing Nightline and someone asked me that question, my response was, "It's news because I say it is." I wasn't just being sarcastic. At every media company, there are a handful of people who have the responsibility each day of deciding what stories to cover. They decide what everyone else will see or read. They decide what's news.

So why is cancer news? The obvious answer is because it affects so many people. But that's been the case for many years, and yet months have gone by with no stories about the disease. Certainly the case of Elizabeth Edwards has focused more attention on it, just as Lance Armstrong's did before.

The flip side of all that is that some outlets, having done a story or two recently, probably feel that they've done cancer, at least for now. Time to move on to something else. We in the media have a notoriously short attention span. Find a story, cover it, move on.

So I was pretty surprised when I saw the front page of the Sunday New York Times. There in the center of the page was a story about chemo brain. The piece focused mainly on women who have gone through chemo for breast cancer, but I think all of us who have had chemo know exactly what they're talking about. That fuzziness that can come on with the drugs. In some cases, sadly, it seems not to go away. And the story said that chemo brain is finally being looked at as something real, something that needs to be treated.

I was glad to see the story given such prominence, and I have to admit I was surprised. So often stories about cancer deal with the "latest breakthrough" or the "next breakthrough" or, of course, the "next latest breakthrough." There was one other thing that I thought was really important about the piece in the Times. It didn't focus on experts or trends or the latest numbers showing rates of various things over the years. No, it did something much more important. It talked about what it's like to live with cancer. It talked about the patients and what they go through. It talked about us.

Leroy Sievers

6:07 AM ET | 05- 1-2007 | permalink | comments (38) | e-mail post