It's Not About Me

It's not about me. I had to laugh. That's how the e-mail from Naomi began, in response to my column from yesterday. I had written about how much it bugged me when people tell stories about someone who has beaten the odds. But Naomi taught me something, made me think about this in a whole new light that I am embarrassed to say, I had not thought of before. She wrote:

Maybe they are not saying it to give you hope, maybe they are saying it to give themselves 1)hope and 2)something to say as they try desperately to process this horrid piece of news. No matter how well or how casually the individual knows you, when you tell them you have cancer, you are forcing them to reassess both your relationship and their perceptions of what will be. And you bring mortality back to the forefront — no longer can it be an unwelcome guest banished to the very edge of their consciousness. It is invited in to sit next to them.

At that moment they may need to have hope for you. As a friend, colleague, or family member, they need a way to give themselves hope that they are not going to lose you. As another living individual, they need to stave off their own fears about death. And often they need to do that while simultaneously holding a conversation with you.

And she's absolutely right. A number of other people wrote to say essentially the same thing. It's so easy to think it is all about me. After all, I'm the one with cancer, right? I'm being sarcastic here. Because it's not just about me, it's about all of us: the patients, the friends, family, loved ones, even strangers who are somehow touched by this disease.

I have to admit that when people tell me those stories, I only think about my reaction to it, not their need to have hope, to express hope, to try to help themselves and me. I have learned something today, and I thank Naomi and all of you. I won't forget this lesson.

Leroy Sievers

4:18 PM ET | 09-29-2006 | permalink | comments (10) | e-mail post

I Have My Own Battle to Fight

On the list of things you hear most often, it probably comes in second. First, of course, is "You don't look sick." That one's always nice to hear, even if you know that it may not be totally true. But the one I'm talking about is "You know, my... [fill in the blank here, friend, co-worker, relative]... was diagnosed with cancer, given a couple of months to live, and is still alive, ten years later."

I have to admit that those stories make me a little nuts. I have been thinking about it for a while and wasn't going to write about it because, quite honestly, I know that all the people who say some version of that mean well. They are trying to be supportive, to show that those bleak prognoses aren't always right. And I appreciate that.

And I always try to express my appreciation. The last thing you want to do is to be rude to someone who's trying to cheer you up. But I also want to say that while that's great for the person in question, it really has no relevance for me. Every case is so different. It's true that some people defy medical convention and beat this disease. A lot of others don't — too many. And for obvious reasons, people rarely tell a different version of the story, that "someone was given only a few months to live and passed away shortly after that."

I guess the real reason it bothers me is that I may just not be able to beat it. I may not be one of those success stories. Would that mean I failed? Of course not, it would just mean that I wasn't as lucky as those others. Maybe I'm just being overly sensitive. Maybe I should just take those stories for what they are, an attempt to provide hope in a situation in which hope is a scarce commodity.

But I can't help myself on this one. When I hear one of those stories, I want to say, "That's great for that person. But I have my own battle to fight, and we don't know how this one is going to turn out."

Leroy Sievers

6:49 AM ET | 09-28-2006 | permalink | comments (28) | e-mail post

Losing Someone to Cancer

As I sit down to write this, I'm not sure I'm going to get this one right. Over the last few days, I have heard from a number of friends that they have lost someone to cancer. I didn't know the people that passed away. I actually know very little about them. Some were old; others young. I know that they wanted to live, and I know that their deaths brought sadness to my friends.

And to me, too. We talk so much about living, about fighting, about just getting through the days. How to cope with chemo, how to respond to friends, the joy of a friendship that survives this disease, the sadness of one that doesn't. But the theme is always the same. How do you live with cancer?

But hovering over all of that is the specter of death. Every cancer patient has thought about it — probably thinks about it a lot. Their friends and families think about it, too. I don't think many of us dwell on it, though. I know I don't. Or at least I try not to, and most of the time, I succeed.

But for some reason, the news of these recent deaths got to me. Not just because I care about my friends and I am deeply saddened by their losses. I really can't explain it. Maybe it just hits too close to home.

So here's the part I don't think I was going to get right. My original intention today was to say that we should stop for a minute in our busy days and just remember those who have passed away, who were taken by cancer. But as I write that, I realize that I don't need to say it. The friends and families of those who have died never forget. Over time, the pain may lessen, but you never, ever forget. So maybe all I really wanted to do today is to say to my friends and to all of you who have written in to say that you have lost someone — father, mother, child, friend, grandparent, colleague — all I want to say is that I'm sorry. I hope that over time, you will find peace. And I just want to remind all of us, whether we know each other or not, that we're all in this together.

Leroy Sievers

6:46 AM ET | 09-27-2006 | permalink | comments (19) | e-mail post

Who Would I Have Become?

What if? I don't ask myself that question very often, but every once in a while I do think about it. What if? What if I hadn't gotten sick? What life would I be living now? In some ways, cancer was like a fork in the road. One way led to another life, one that will go unlived, where I didn't have cancer. The other is the route that my body chose, for whatever reason.

Now, I don't think about that out of self-pity or anger or despair. No, it's more just a question of curiosity. What would that life have been like? Who would I be? I have to admit that I was sort of lost after I left ABC. For my entire adult life, I had gone to places and watched while bad things happened to other people. So I decided — no, I knew — that I needed to find a way to make a difference.

I tried teaching, which I loved, but which never really felt like a real job to me. I wanted to do relief work of some kind. I really just wanted to go DO something. Deliver food to starving people. I know how to load planes, run a convoy, but I couldn't find anyone that would let me do that.

And then I got sick. I know that my cancer has cost me some jobs. I understand that — I'm not sure I would have hired me in these circumstances. Too many questions. Could I show up for work often enough? Would they have to fill the job again in a few months? No, I was too much of a risk. But I wonder what I would be doing now if I hadn't gotten sick.

I'm sure, in that other life, that if I saw someone who was clearly undergoing chemo, that I would feel badly for an instant, feel sorry for them, but then move on with my life. I wouldn't understand. Some of my friendships wouldn't be as close as they are now. I wouldn't have reconnected with so many old friends. This blog wouldn't exist. I wouldn't have had the opportunity to get to know all of you, at least electronically. You all would be on the other side of the divide. But I think that this project did, ironically enough, help me find what I was looking for. A way to make a difference.

Has cancer made me a better person? I don't think so — just a different person. I know some things now that I wouldn't have known otherwise, but who's to say I wouldn't have learned different things in that other life?

But my path was chosen for me, and that can't be undone. You don't get to go partway down that road, look around, and say, "You know what? I think I like the other road better." So I have accepted the journey that I'm on — it's the only one available. But sometimes I'm just curious. What would that other life have been like? Who would I have become?

Leroy Sievers

7:16 AM ET | 09-26-2006 | permalink | comments (22) | e-mail post

We're Not Moral Guardians

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

I ran into a friend of mine on the street the other day. He was smoking. I started to kid him about quitting.

I was sort of serious. We all know the dangers of smoking and how quick and deadly lung cancer can be. But I didn't want to be annoying about it.

And then my friend said something that stopped me. He said he felt embarrassed to be smoking in front of me.

Why would he be embarrassed? I'm not his judge or jury.

Or am I? Is that how people see those of us with cancer? We're all facing the real possibility of our own deaths much earlier than I think any of us expected. Does that make other people uncomfortable when they do risky things that could lead to disease or death? I don't judge other people — OK, except about smoking: I do think everyone should quit. Beyond that, everyone's life is his to live. They don't have to justify their decisions to me.

But do we, as cancer patients, have some sort of moral authority that we're not really conscious of? Almost all the cancer patients I talk to, and certainly many of you who've written in, talk about wanting to make the most of each day. That doesn't mean climbing Mt. Everest. It just means trying to appreciate each day of life — even the bad days.

Maybe we've learned something most people talk about but rarely practice. Cancer has a way of focusing the mind. When you're fighting for your life, it does change the way you look at other things: your job, the small problems that crop up in day-to-day life, the little things that seem so big sometimes. It's easy to get caught up in all that when your future seems unlimited.

But my friend's comment made me wonder. Do people think we're judging them? That they somehow have to justify their choices because we have a disease? Does the fact that we're fighting for every day of life mean that we do get to judge them — that we can criticize or condemn their actions if they seem to be squandering the gift of life? I don't think so.

I don't think any of us wants to be put in that position. I don't want people to change their behavior around me just because I'm sick.

Cancer happens to all sorts of people — old, young, good, bad. It doesn't seem to discriminate. But it does change people. It's changed me. Cancer patients have had to confront their own mortality, to judge their own lives in a way that I think does make us different. But we're not moral guardians. We're not responsible for the health choices of our friends. We can advise, suggest — maybe even plead or argue — but that's what friends do anyway. If we have any moral standing, it's that we're simply trying to live the best lives we can, just like everyone else.

Leroy Sievers

6:40 AM ET | 09-25-2006 | permalink | comments (18) | e-mail post

I Couldn't Keep It Secret

I think we have to tell. We have to be honest. That's where I come down in the ongoing debate over tell/don't tell, share or push away. I can understand why some people may want to keep their diagnosis secret, but I couldn't do it. I just couldn't hold all of that inside of me without bursting. I need the help of those I care about.

Actually, I find myself wanting to say something about my cancer when it may not be totally appropriate. I recently had a workman over at my house. I had a problem with the house alarm, and he helped me. I made sure that I helped physically, with the ladder and so on. A minor point — something that I'm sure was lost on him, but important to me.

At the same time, I couldn't help thinking that he probably wondered what I was doing home. In all honesty, this round of chemo has hit me hard, and I'm having a hard time fighting through it. I know that it will get better in a couple of days, but right now, it's tough. I sort of felt that I needed to explain that to him, but I knew that wouldn't be right either. As far as he knew, I was just able to be here when he showed up.

So what fuels that impulse to give out too much information to strangers? I guess it's just that I don't feel like I'm really myself anymore. I'm weaker, I'm certainly sicker? I can't do some things that I never used to even think about. And I feel the need to explain that, to make people understand, even though I know that it would never occur to them that I had cancer. And quite honestly, it would probably be a little awkward, too. I guess sometimes I feel the need to just shout, "This isn't me! This isn't who I'm supposed to be!" But it is me. I need to know that, to remember that, to understand that — even when others don't.

Leroy Sievers

6:25 AM ET | 09-22-2006 | permalink | comments (22) | e-mail post

The Celebration on the Hill

You all don't know Ben Brudevold-Newman, but he has come to know many of you. He is the guy at NPR who reads every comment that comes in to the My Cancer blog, and he posts them on the site. I've talked in the past about the "parallel universe" that cancer patients live in. Well, Ben was dragged across that line into our world, not by the disease, but by his job. I've often wondered what that experience has been like for him. Thousands of cancer activists and survivors have come to Washington this week, and so we sent Ben down to take a look — not so much so that he could report on the events, but so he could meet people in person, people like us. Cancer patients.

It isn't easy being pulled into the cancer world. To be honest, I have mixed feelings about my experience working on My Cancer. It's hard — I don't always enjoy it, but I know it's good for me. Reading Leroy's posts and all of your comments is taxing. Just when I think I've read the most heart-breaking, tragic account of what cancer can do to a person's body, spirit or family, someone tops it. It's hard to leave these testimonies at work.

On the other hand, I really enjoy working with Leroy and the staff here. I really admire him as a journalist and a person. It seems like everyone knows someone affected by cancer, and odds are that I'll have to confront cancer in the same ways that many of you do.

When I agreed to attend the Cancer Action Network's "Celebration on the Hill," I didn't know what to expect. I knew the event is a highlight on the cancer lobby's calendar — with thousands of people from every single congressional district descending on the National Mall, rallying to put cancer funding back at the top of the political agenda. But that was all I knew. The main advice Leroy offered me was to just "have fun." I didn't think it would be easy, but I didn't think 10,000 participants, all wearing purple T-shirts would turn the event into a street carnival, either.

As I arrived, I was ushered toward the media center — a white tent near the main stage. The opening ceremony was about to begin and I waited for the organizers to pair me with a cancer patient or survivor to be my guide for the day. Standing in the tent, I felt like I was in some kind of quarantine, intentionally separated from the purple T-shirt-clad crowd. So I watched the opening ceremony from inside the tent, feeling ironically like the sick person, observing, but not participating, from behind a transparent plastic curtain.

Then I met Nichole, a 22-year-old from Sacramento, Calif. She is a cancer ambassador for the Cancer Action Network and was chosen to speak with her legislative representative about supporting pro-cancer initiatives. If it weren't for her purple T-shirt, I would have guessed that the sash reading "SURVIVOR" draped over her shoulder was an indication of her status as the Survivor, Calif., beauty queen and not the badge of a cancer survivor.

I was struck by Nichole's response when I asked her whether she felt burdened by my presence — having to show someone around, let alone a cancer community outsider. Nichole reassured me that she was glad to help, but added, looking toward the parade, "If you aren't wearing purple, you're not really participating. You're watching."

Nichole guided me to the reflecting pool in front of the Capitol to chat. She told me about her diagnosis as a 3-year-old with Acute Lymphoblastic Leukemia (ALL), her early experiences with cancer activism and her involvement with the Cancer Action Network community. We shared our thoughts on politics and the American health-care system. We bonded over the "what should we do with our lives" crisis. We were interrupted a few times by the noise from the survivor's parade: clapping, whistles, bells, noisemakers and the Puerto Rican survivors chanting "Ole! Ole!" as they danced by.

A little while later, I sat at a picnic table writing notes from my conversation with Nichole. I could overhear conversations between a lot of different people nearby. They were talking about things really similar to what is said on the blog. People were telling each other to take one day at a time. They were talking about different diets and asking about chemo and surgery. Everyone was very open and expressive.

I think coming out en masse today and being together as part of the cancer community put everyone in a comfort zone. One organizer told me most of the relationships in the community are forged over the phone or through e-mail, and this is one of the few events where they get to meet people face to face. She said it was "like Internet dating, but different."

So what if I didn't have a purple shirt? The important thing is I was there, watching and listening. And those are two of the three things Nichole and her community desperately want from lawmakers: to watch and listen. And then to take action.

-- Ben Brudevold-Newman

Leroy Sievers

6:32 AM ET | 09-21-2006 | permalink | comments (4) | e-mail post

I'm Never Sick in My Dreams

We got this note from Mary the other day:

I have such an awesome support network, but all I feel I should do is to push them away... The farther I push the less pain they will have to see me go through. I want in no way to hurt, or have someone's life wrapped up in my problems. This is so hard to do, to love unconditionally but to know that that love is exactly what is going to hurt your friends...

Where do I go from here, and how the heck can I get to sleep...

I'll take the easy one first. How do you get to sleep? Sometimes you can't. There's just too much to think about; it's almost impossible to turn off. But sleep can also be a refuge, a time when you don't have to think about it all. And your body needs it for all the obvious reasons. One funny thing I found: I usually don't remember my dreams, but when I do, I have never been sick in my dreams. Maybe chased, unprepared — the usual stuff — but never sick.

The other question is much harder. What we go through is painful for those who care about us. But I think you make a mistake if you try to push them away, to spare them. First of all, you need that support and love. I don't think anyone can go through this alone. But as I've said before, it's important to them.

One of the greatest gifts I think you can give someone — as painful as it may be — is to allow her to share this difficult time. This is clearly one of life's most intimate processes. But I think you honor them by allowing them to help you.

And to shut them out would probably be more painful than anything. We've talked a lot about the role of friends. Some handle it better than others. But I think everyone does the best they can to help. Let them. They're going to get hurt. I think everyone knows that going into all this. But knowing that it's going to hurt, that they're going to hurt for you, and wanting to help anyway — isn't that what friendship — what love — is truly all about?

Leroy Sievers

6:56 AM ET | 09-20-2006 | permalink | comments (14) | e-mail post

New Clothes, New Shoes

I finally did go shopping this past weekend. The first time since my diagnosis in December. I bought a couple of things, and yes, for all of you who wrote in, I did buy a pair of pants. And I bought a pair of shoes. It was funny; I looked at them, walked away, went back a while later, walked away again.

I was trying to decide if it was worth it to buy them. Which would wear out first? Me or the shoes? That sounds silly, but for cancer patients, it's a real question. Is it worth it? Did I need them? No, I have plenty of clothes and shoes. Did I want them? Yeah, I did, and partly to just stick my finger in the cancer's eye.

I've begun to feel a little more optimistic at times; I'm hoping that maybe the Avastin, the new drug, may actually be doing something. Many people wrote in saying that they had good results from it. But I'm worried about getting my hopes up, of counting on something that is far from guaranteed. I'm trying to prepare myself for another of those discussions. "We're sorry, it just didn't perform the way we hoped. We need to try something else."

But in the meantime, we all face the same issues as my shoe purchase. Several of you wrote in last week talking about agonizing over long-term warranties. Are they worth it? Do you buy a five-year, or two-year warranty on something, when your doctors have given you a life expectancy shorter than the warranty? Warranties usually include a phrase something like "for the life of the product." What about "for the life of the purchaser?"

I guess maybe I'm tired of being completely conservative on this front — not buying anything. I mean, what the heck, right? So I'm going to put on my new clothes and my new shoes, and tell myself I look good. And maybe that small act of optimism will do as much damage to the tumors as the drugs. I hope so.

Leroy Sievers

6:16 AM ET | 09-19-2006 | permalink | comments (18) | e-mail post

Does Cancer Hurt?

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

I've never felt my cancer. I know it's there — the doctors have told me so and I've seen the pictures. Bright white spots on the otherwise grey and black scans. But that's really the only way I know I have it. I've never had symptoms from the cancer itself.

Recently, one of my colleagues asked a very basic question, one I'm surprised hadn't occurred to me before.

"Does cancer hurt?" A simple question, but not a simple answer.

Five years ago, my cancer was detected by a routine colonoscopy. It was a total surprise. I didn't have any symptoms back then either. The operation to remove it certainly hurt, or at least the recovery did. I had a line of staples down my stomach a foot long. I remember the nurse saying that removing them wouldn't hurt a bit. Well it did hurt. I mean, c'mon, they're pulling staples out of your stomach with a staple remover that's only slightly fancier than what you'd buy at the store. And the recovery was painful too. But the cancer? Never felt it.

Didn't feel it this time either. A brain tumor and tumors in my lungs. Brain surgery was painless, too. Turns out, your brain doesn't have pain sensors. Of course, I had another line of staples, just shorter than the first one, down the side of my head. And yes, those hurt a little, too, when they were pulled out.

The chemo has made me sick, but again, no pain. I know that's not the case for everyone. Many cancers cause incredible pain, but not mine. I have a very high tolerance for physical pain anyway. Over the course of my life, I've been beaten bloody with clubs (by the Chilean army, if you're curious), been tear-gassed and hit with water cannons. I've been shot at, shelled... even had people throw dynamite at me.

Now some of those things hurt — a lot. But does cancer hurt? You bet. It hurts in ways that transcend physical pain.

That first diagnosis is like a knife into your heart. That first bleak prognosis? That's a punch to your stomach. Waiting for the results of a scan? Water torture — slow, agonizing, excruciating.

It hurts in the dark hours of the night, when you're alone with your thoughts, and you have to confront the idea of your own death. It hurts when something simple reminds you that you may not be around in six months, a year, whatever. It hurts when you think about the things you're going to miss.

But that's not the worst of it. Cancer spreads the pain around. You see it in the tears of a friend when you tell them. You see it in the eyes of your doctor who knows that in a few seconds, he has to give you bad news. You see it in the eyes of your loved ones, friends and family, who want so much to help, but can't, and who are so scared for you and scared of the loss that your death will bring.

So to answer the question, "does cancer hurt?" I haven't felt a thing — except for when it hurts so badly you can barely stand it.

Leroy Sievers

6:48 AM ET | 09-18-2006 | permalink | comments (36) | e-mail post

Questions That Have No Answers

There is no answer. I'm talking about that one question that probably haunts us all at some point. Why me? (Or why not me?) We've talked about that a lot on this blog. But even though there really is no answer, that question still has a way of popping up every now and then. I think that most of the time, cancer patients look ahead. Not necessarily to the future. No, that's a luxury that is sometimes denied to us. But I think we mostly look ahead to the next treatment, the next scan, the next breakthrough, the next... well, whatever this disease has in store for us next.

I don't spend a lot of time thinking about how this happened. That's in the past. Whatever it was — genetics, family history, environmental, bad luck — it really doesn't matter now. What matters is that I have it.

Gal Levin wrote in to say that this whole "Why me?" debate "may only be understood as part of our need to make sense of our lives, our inability to accept that there may not be a meaning."

"Our need to make sense of our lives." That phrase jumped off the screen. "Why me?" can be a cry of despair, a cry out against the unfairness of all of this. It certainly doesn't mean "and why not them?" None of us would wish this burden on anyone else. But I think asking that question is part of our need, our attempts, to make sense of what has happened to us.

We need to understand. I need to understand. I understand the little things all too well — how the tumors work, how the chemo feels, all of that. No, I'm talking about the big questions: What's happened to my life? How did I end up in this situation? What the hell is going on? Could there really be no greater meaning to this?

But I know that those questions belong on the same sheet of paper as "Why me?" — the sheet of paper titled "Questions That Have No Answers." And as I said above, maybe it really doesn't matter. What matters is where we are now. Dealing with cancer is a big enough question as it is. But part of me still thinks that it ought to make sense. Somehow.

Leroy Sievers

7:04 AM ET | 09-15-2006 | permalink | comments (14) | e-mail post

Other Things on My Mind

So I've been sitting here at my computer for a while, trying to figure out what to say today, and to be honest... nothing has come to me. I usually wait for inspiration to strike. I usually write in my head. I think about something, and gradually, the piece comes into view and I sit down and pretty much write it in one sitting.

Sometimes finding a topic is easy, I look at the comments that you all send in, and someone will say something that triggers an idea. The responses to yesterday's column about optimism were terrific, I hope that you all read them. Several people wrote in to say they had bought new houses, a real commitment to the future.

But today, nothing is coming to me. Maybe this just isn't a cancer day. Maybe that's not the most important thing in my life today. I have other projects to worry about. Other things on my mind. One of the things that this blog makes me do is focus on my cancer every day. I have to stop and think about it, think about what it's done to my life and what it's done to my friends and family. Every day I try to find meaning, a lesson, some way to make sense out of what so many of us are going through.

But as I have tried to do that today, other things keep crowding into my mind. The whole cancer thing keeps getting pushed aside or into the background. I still have the little reminders — the tingling in my feet and hands and all that. Maybe it's because I'm in a week off from the chemo, and I'm starting to feel a little bit like my old self.

I hope that I haven't disappointed any of you by not coming up with more today. But this is one of those rare days where cancer has taken a back seat in my life. And you know what? It feels pretty good.

Leroy Sievers

6:48 AM ET | 09-14-2006 | permalink | comments (26) | e-mail post

Hold on to Optimism

Optimism: The feeling that things will get better or at least not worse. The belief that there is a future. That can sometimes be in short supply when you're fighting cancer. It's hard not to let the seemingly unending flow of bad news overwhelm you and make you believe the worst.

But I think that even in the darkest hours, when things seem the bleakest, we need to hold on to a little optimism, even if it's just a tiny spark. Otherwise, I guess we would just give up. I know how tempting that can be at times, and that's OK, as long as we don't really do it.

So here's my... well, I was going to say challenge, but that doesn't seem right... here's my request to all of you. Do something optimistic today. Do something that says, "I believe that I have a future." Start reading a really long book, maybe the entire Harry Potter series. Plant seeds that you can nurture over time. I don't know, start to learn another language, take up a musical instrument, write that novel you've been talking about since college. Go out and buy winter clothes or spring clothes. Go buy the DVD of your favorite TV series, and start watching the whole thing from the beginning. Put off something that you should do today until tomorrow. Whatever seems right to you. And then let me know what you end up doing.

If this is a bad day, if the chemo has hit hard, or the depression has sapped your strength, or if the sadness that we all know so well just seems too much, maybe all you need to do is go outside, raise your fist in the air and say "Today is NOT a good day to die! I'm going to be here tomorrow!"

And for those of you who are caring for someone with cancer, you can do the same thing. Make plans for six months from now. Plan for that birthday next summer or a weekend away next spring. Start reading a long book to someone who's bed-ridden. It's important that you all keep a little optimism, too. Hopefully, it will be contagious.

Leroy Sievers

6:33 AM ET | 09-13-2006 | permalink | comments (20) | e-mail post

You Might as Well Wear Pants That Fit

I think I'm going to go shopping this week. That may not sound like a big deal, but I haven't bought any new clothes since I was diagnosed back in December. Given what my doctors were saying, spending money on new clothes that might not get much use seemed like sort of a waste. That certainly sounds morbid, and a little melodramatic now, but at the time, it didn't.

But then I'd been through that thought process before. The day before I had my colonoscopy five years ago, I bought some new clothes and a new watch. When I was diagnosed with cancer the next day, I wondered if I should return all that. Well, I still wear the watch.

But there are some more practical issues at play here. Unfortunately, I have gained weight — about 10 or 15 pounds — through this process. My doctors are thrilled; they see that as a good sign. I'm less than thrilled. The biggest problem was that at Christmas, when the house was full of food, I was on steroids, which give you a huge appetite. Not a good combination. My waistline hasn't recovered.

So some of my old clothes don't fit so well anymore. And while the doctors were making dire predictions, I pretty much figured I could get by on what I had that still fit. Well it's been a while now, and I don't seem to be going anywhere soon, so I can't put it off any longer.

It would be easy to say that a new wardrobe is one more way to strike a blow against the cancer. In some ways, I guess it is a sign of optimism. But more than that, it's a practical matter, and a real sign that no matter what we may think, life goes on, and you might as well wear pants that fit.

Leroy Sievers

7:21 AM ET | 09-12-2006 | permalink | comments (23) | e-mail post

Contemplating Life After Cancer

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

What if it works? That's a question that I haven't really thought about until now, believe it or not. What if this new drug works? What if the tumors shrink or even go away? What would I do? It seems funny not to have considered that, I guess. When I was first diagnosed, the doctors were pretty clear. They said "cure" was not in my vocabulary. They didn't expect the cancer to go into remission, and so they said I shouldn't, either. They were pretty clear. My case is terminal — it's just a matter of when.

But I've heard from a lot of you whose cancer has gone into remission — those of you who've reached that magic five-year milestone. Doctors say if your cancer doesn't come back for five years after treatment, you're cured. I was at four and a half years when they found my brain tumor.

I don't really expect to be cured. But then the initial prognosis had me dying several months ago. The next one has me dying a couple of months from now. I don't expect that one to be right, either. But what if the miracle does occur? What would I do? How would I live? I honestly don't know. I've learned so much from this process and learned so much from all of you. I don't think I would drastically change the way I live. There are still a lot of things I'd like to do, so I guess I would just get down to the business of living.

And then, of course, there would be the question of what would happen to this blog. Maybe the right thing to do would be to hand it over to someone else to continue. But let's be honest. That's probably the last thing I have to worry about. It's unlikely I'll be cured. But it's fun to think about. The other day, Eric wrote in to the blog to ask about hope.

I am really curious about the hope that you have for the future, as opposed to despair. Where does this hope come from? How is it maintained?

Where does it come from? I guess from the heart. I've always been stubborn. I'm just not ready to give in, certainly not ready to quit.

How is hope maintained? Sometimes it isn't. There are tough days — there are times I've considered stopping treatment and letting things play out.

But in the end, you have to have hope. I don't think any of us could get through this without it. Maybe it's the hope that tomorrow will be a little better. Maybe it's the hope that I can accomplish things in the time I have left. Maybe it's just the hope that wells up inside you on a sunny morning. However you define it, I think we all have to hold on to it. It's part of what keeps us alive.

Leroy Sievers

6:24 AM ET | 09-11-2006 | permalink | comments (26) | e-mail post

We Are Truly Lucky

We've talked a lot about that troubling question, "Why me?" I think all of us have asked it at one time or another, even though there really is no answer. Some have responded with "Why not me?" A fair question. Others have rightly looked at the tragedy of children struck by cancer and asked "Why them?"

Nancy wrote in the other day with a wonderful quote from Arthur Ashe. I wrote her back to say that she had made my day, but I think the quote is too good not to share with all of you:

"If I were to say, 'God, why me?' about the bad things, then I should have said, 'God, why me?' about the good things that happened in my life."

I'm not sure that there's a whole lot more to say after that. And no, I'm not just trying to find an excuse to not write more. But I think that one's worth thinking about, whether you have cancer or not.

I grew up at a time when parents really did say "Eat your vegetables! Children in (fill in the blank here) are starving." And that was true then, and unfortunately, it's still true today. Although the connection between eating something yucky and somehow helping those children was never really clear.

But there is so much pain in the world. I know. I've seen a lot of it — actually made my career out of it. We are truly lucky. And I think that sometimes it's important to remember that. So I leave you with Arthur Ashe's wisdom and my hope that you all have a good weekend.

Leroy Sievers

7:04 AM ET | 09- 8-2006 | permalink | comments (13) | e-mail post

A Victory over Fear

How do you make the shift from trying not to die to living? That's the question that one person sent in yesterday. A woman named June sent in another one:

"I know I should learn to enjoy life now, and what will be, will be. But how do you move past the fear?"

I think that they are related.

I think we all have a sort of idealized sense of "living." Making the most of every moment. Stopping to savor the little things. Living a full and meaningful life. And those are all true and things to aspire to. But they're not possible every day or every moment. A bad day for a cancer patient can mean doing little more than just getting up in the morning and making it to the couch. Life with cancer can be full of pain, sadness and despair. But not always.

I think that "living" just means doing the best you can on any given day. That's also true for everyone who doesn't have cancer. You don't have to go out and change the world every day. I think that just being the best person you can be under the circumstances, sometimes rising above our challenges, sometimes not — that's all "life."

Trying not to die is all part of that. I think it was John Lennon who said that life is what happens to you while you're busy making other plans. So let me butcher his words and say that life is what happens while you're trying not to die. Everyone has plans, everyone has dreams, things they hope to accomplish in the future. Cancer patients have those plans and dreams curtailed at best, taken away at worst. But that doesn't mean you stop living.

So how do you get past the fear? Fear of what? Of dying? It's a cliche to say that we're all going to die — that's cold comfort. The fear of bad news, of the cancer spreading, or that initial diagnosis — all of those things strike deeply into our cores. But each day, each joke you tell, each friend you comfort, each friend you allow to comfort you, each of those small things lessens the fear a tiny bit. Each day lived, for better or worse, is a victory over fear.

We've talked a lot about how doctors are playing for time. How an additional few months is seen as a triumph. All of that's true, but I think that we need to remind ourselves that while we can look to the future with confidence or fear, hope or despair, that it's today, well-lived (however you define that), and tomorrow and the next day — that's what makes up our lives.

Leroy Sievers

6:57 AM ET | 09- 7-2006 | permalink | comments (16) | e-mail post

Riding the Roller Coaster

The following is a commentary from Morning Edition, Sept. 6, 2006:

It's a lot like being trapped on a roller coaster. A really good one with lots of twists and turns and huge drops — the kind that make your stomach turn over. "It," in this case, is life with cancer. And the chemo makes your stomach turn over, too, but that's a different issue.

In some ways, the life of a cancer patient becomes predictable. You learn the rhythm of the chemo. The first day, five hours hooked up to a machine pumping poison into your arm — that's the start of the cycle. The third day, that's the first big drop on this ride. That's when the side effects hit hard. The nausea in the morning that you just have to fight through. The fatigue and so on.

And then it gets better over the next couple of days. The second week is easier, and the week off? That's a little bit of heaven.

But then every once in a while, they change the ride. New drops, new twists, new fears. That's the ride I went on a few weeks ago. We thought everything was going fine. I was down to just one drug, with fewer side effects, and we thought that would hold the tumors in place. But it didn't work. In just a short time, the cancer grew and new scans showed a new danger: a tumor on my spine. That's one of those drops that makes your stomach turn over.

So I'm back on the original chemo with something added: a new drug that shows some real promise — it might actually shrink the tumors. We won't know for a while, not until I take it for a couple of cycles and we do new scans.

As much as the twists and turns of this ride affect you physically, the ups and downs play havoc with your emotions, too. You look for hope where you can find it. You brace yourself for bad news. But when it comes, it still hits harder than you were prepared for.

When you can, you smile and reassure everyone in your life that the ride isn't too bad. Other times you can only admit that that last drop really got to you.

After a while, you forget what it was like to not be on the ride — that life on solid ground is over, at least for now. Your ticket is for a truly wild ride, and there's really no way to get off.

And no one else, as much as they want to, as much as they may need to, no one else can really ride along with you. They can watch; they can be supportive. But when you're up there on top of the ride, looking down on that huge drop in front of you, you're the only one in the car.

Leroy Sievers

6:16 AM ET | 09- 6-2006 | permalink | comments (47) | e-mail post

How Can You Turn Off the Fear?

Is cancer a curse to be handed down from generation to generation? A lot of you have written in about the uncertainty and fear that can grip families that are hit by cancer. Some, whose parents have gotten the disease, wonder if they're next. Those parents wonder if they will pass on the suffering to their children. And there is a strong genetic component in many types of cancer, but not all.

When I first got colon cancer five years ago, I asked my doctor if I needed to drastically alter my lifestyle. He laughed and said no, that my type of colon cancer was genetic. Let me explain why he laughed: I actually asked if I had to give up cheeseburgers, a recurring concern of mine. But he was right about the genetic part. My grandmother had it, my mother had it and I have it. So far, my sisters have escaped.

So it's not automatic, it's not certain, it's not a family curse. Except when it is. The worst part of all this may be the fear. Each generation just waiting for the bad news to strike. That's no way to live, but I can certainly understand it. How can you turn off that fear?

There is so much we don't know about cancer. There are certainly environmental factors, at least in some cancers. I think back to the time I spent in the burning oil fields in Kuwait, when the rain itself came down black. Was my cancer somehow related to Gulf War Syndrome? Probably not; that wouldn't explain my family history. But do those factors make you more susceptible? Who knows?

And in the end, it may not even matter. Honestly, I don't really care how I got it or why. I have it — that's the overwhelming reality, that's what I have to deal with. I would like to offer reassuring words to those who are worried that it's coming their way, that it's almost inevitable. But I don't have those words, other than to say learn all you can, talk to your doctors, make the lifestyle choices that make sense for you. But don't live in fear. Life is too short for that.

Leroy Sievers

11:57 AM ET | 09- 5-2006 | permalink | comments (17) | e-mail post

'Why Not You?'

I read all of the comments that you all send in to this site. One of the things that is so striking is how similar all of our experiences are. We share the same fears, the same hopes, the same ups and downs. But every once in a while, someone will write something that just stops me cold. Here's a note from Peg from a couple of days ago.

"The question is 'Why me?' When I voiced that when I was first diagnosed, a friend of mine who had lost a son when he was only 9 years old looked at me and said, "Why not you?" Profound question and one I do not have an answer for."

I have no answer for that either. I have to admit, it's not a question that I had considered before. It's tempting to keep writing about this, but this time, I think I'm not going to. I just want to leave it at that. It's a question worth thinking about.

Next Monday is a holiday, so there won't be a new post to the blog until Tuesday. I'll have a commentary next week on Morning Edition, which will be up on the blog, too. Maybe by then, someone will be able to answer that question. I hope you all have a great holiday weekend.

Leroy Sievers

6:34 AM ET | 09- 1-2006 | permalink | comments (25) | e-mail post