A Race Between Chemo and Cancer

It all pretty much comes down to one thing. Time. We're all fighting for time. I saw my oncologist yesterday while I was getting my chemo. He's pretty encouraged by what is happening. On the other hand, he reminded me — actually, I asked him again — that the studies show that the chemo I'm on, with the Avastin, on average gives patients an extra four months. Now, we all know how much those averages are worth, but even so, it's a cold bit of reality.

But I need more time. I need to be able to watch the whole season of 24. I want to read the last Harry Potter book when it comes out this summer — at least I think it does. And I have that Halloween party to host next year.

There's a sort of race going on between the chemo and the cancer. I just happen to be the racecourse. Before I knew much about cancer, I always thought it's the tumors you have that are the danger, and the biggest ones are the most dangerous. Not necessarily so. My tumors have shrunk, and I seem to be holding them in check. But what the doctors fear, and therefore, so do I, is the spread of new cancer. The cancer will eventually break through the chemo. That's just a matter of time. What that means is that the drugs will kill off some of the cancer. But other cancer cells will be resistant, and they will survive and multiply. And when that happens, you have to change what you're doing, switch treatments.

So the race is really a contest to see how much the chemo can shrink the tumors before the cancer breaks through. As long as the chemo is ahead, I'm getting more time. When the cancer breaks through, and it's a virtual certainty that it will, then we start the race all over again.

As much as I have thought about my own death, I find it hard to grasp the idea that at some point I will simply run out of time. So for now, I'm going to try not to think about it too much. That seems like sort of a waste of time.

So Happy Halloween to all of you. Dress up in costume, enjoy some candy and have a great holiday.

Leroy Sievers

6:58 AM ET | 10-31-2006 | permalink | comments (15) | e-mail post

Adjusting to Newfound Hope

The following is a commentary from Morning Edition, Oct. 30, 2006:

Hope is an amazing thing. I wrote this sitting looking out my window into a backyard filled with trees. All the leaves have changed colors — reds, yellows, oranges. It's truly my favorite time of year. Maybe because I grew up in Southern Calif., where the seasons are pretty much nonexistent. As children, we knew it was fall because we drew colored leaves in art class even though we didn't see the real things outside. Don't get me wrong, I love summer on the beach. But a cold crisp fall day is truly something to be savored.

I'm not just stalling here. I'll get to my point shortly. I've been thinking a lot about this fall, trying to make sure I take the time to enjoy it, because my doctors had said it wasn't entirely certain I'd live to see another one. That's a strange idea to face. How could I not be around next year? Are they serious? Well, yes, they were. But those predictions, or fears, more accurately, are based on averages, not specific cases.

And my case has taken a turn now. After a couple of setbacks, I had new scans last week that were good. The tumors in my lungs have shrunk, and there's some evidence that the tumor on my spine is healing. All good signs.

It's taken me a couple of days to truly understand this. I'm not sure why. Hope is a new sensation. I don't want to overdo it. I think cancer patients build up a defensive posture. We put up walls to shield us from all the bad news we get. I'm a little scared to think that there may come a time when I'm essentially cancer-free, even for a little while. Is that really possible? I push that thought out of my mind.

The positive results have certainly bought me more time, and that's something I hadn't really expected. I have to admit that Halloween is one of my favorite holidays. We used to have a huge Halloween party every year. It was a big deal — it took weeks to get ready for it. We're not having it this year for obvious reasons. I'm just not up to the work involved. I probably shouldn't admit this, but if we did have the party this year, I think I would have come as a tumor. After all, what's scarier than that? And I've always believed that good taste has no place when it comes to picking a costume.

But next year? I think maybe we'll have the party. In the meantime, I'm just going to sit here for a little while and enjoy the leaves. And my newfound hope.

Leroy Sievers

6:06 AM ET | 10-30-2006 | permalink | comments (35) | e-mail post

Are There Really 'In-Between' Times?

"Why don't you talk about something besides cancer for a day or two?" That's what one woman wrote in to say the other day. She wasn't being mean — far from it. She was just trying to say that I should savor those times, the "in-between times" she called them, when you don't have to focus on cancer.

Is there really such a thing as an "in-between" time? I don't want to think about cancer all the time. I don't want to let it crowd everything else out of my brain. But it's hard not to. The side effects almost make that impossible. The feeling of pressure on my fingertips never goes away — it's a constant reminder. Some of the other side effects — the nausea, tingling in my feet — come and go, but I always am conscious of the fact that I don't feel like myself. Ever.

I do get distracted, caught up in work or a book or TV show. There really are times when I forget for a while, and that's nice. Of course, as soon as you realize that, the spell is broken and it's back again.

But that's just the day-to-day cancer. Cancer patients are faced with tough decisions. It appears that the chemo is working. I don't know what that means in the long term, but for now, the tumors have shrunk. In a couple of weeks, I have to decide whether to take a break from the chemo or not. It's working, I'm unwilling to give those nasty little suckers a chance to catch their breath, but at the same time, my body can't take chemo forever. So what to do?

But I don't have to make that decision now. I can put it out of my mind for a while. I can have an "in-between" time. Except of course, that my work on the My Cancer blog makes me stop and think every day about my cancer, and the effect it's had on my life and the lives of thousands of others. My friends want to talk about it. They're thrilled about the scan results, more thrilled than I am — something I still don't quite understand. So it's hard to get away from it.

What should I talk about instead? Before I got sick, I concentrated on things like the continuing debacle in Iraq, hardship and famine in Africa, things that I thought — and still think — are important. I still read several newspapers and Web sites religiously. I care about the upcoming elections, and am paying close attention to those races. What I'm trying to say here is that I haven't stopped being me. I still care about the same things. I still care about my friends and loved ones. I still try to lead a good and valuable life. Cancer hasn't taken that away. In some ways, it has sharpened all of that.

So yes, those "in-between" times are golden. Even if they last for only a few minutes, or even seconds. The rest of the time? I'm still me, but sometimes I'm just a little distracted. Cancer will do that to you.

Leroy Sievers

6:37 AM ET | 10-27-2006 | permalink | comments (24) | e-mail post

This One Won't Be Easy

Kick them when they're down. That's pretty much how I feel about the tumors in my body. As miserable as the chemo makes me feel, I hope those cancer cells are having a rough time. It's easy to personalize the cancer. I've seen the pictures, and those burning hotspots that are trying to kill me just look like fairly benign white spots on the scans. I know that they are just big lumps of cells, but somehow it makes it easier for me to think that they can feel pain, that they know I know they're there, and that I'm trying to kill them. Not just kill them, but also make them suffer. That only seems fair.

People have written in about how to refer to the cancer. Is it "my cancer"? Is it part of me? Am I supposed to take possession of it? Or is it "the cancer"? An outsider? That's sort of the way I look at it. I know it's part of my body, but I think of it as an invader, something that doesn't belong. Something that needs to be hurt.

So I have a tough decision coming up in the next couple of weeks. I have had ten cycles of chemo, two more to go. But do I take a break then? My doctor has told me that no one has taken twelve cycles and then just kept going. Your body needs a break. As tempting as it might be to try to set some sort of chemo record, I think that's probably a bad idea. The last time I took a break, the results were disastrous. The tumors grew and a new one appeared. I know that my body could certainly use a break. A couple of weeks, even a few days of feeling normal would be unbelievable.

But would it give the tumors time to regroup, mend their wounds and start to grow again? I would hate to let the progress that I have made be undone. And if I do take a break, I'll probably worry the whole time about what's going on inside me. And that's not much of a break. So I don't know what to do. Luckily, I don't have to decide for a while. Like all of these decisions, this one won't be easy. And every once in a while, it would be nice to get an easy one, but I guess that's just not the way this works.

Leroy Sievers

6:44 AM ET | 10-26-2006 | permalink | comments (26) | e-mail post

Good News Comes in Shades of Gray

I finally got the call I was waiting for late Monday night. You all know what that waiting is like. The football game was OK, not great. Nothing else really on TV to take my mind off of it — no way I could concentrate enough to read a book. Even a couple of glasses of wine didn't help. Well, that may not be true.

Then my doctor called. He said the results were a mixed bag. As much as we might want everything to be black and white, the cancer world is made up of grays. The tumors in my lungs have shrunk — at least a couple of them have. That's good news. The tumor on my spine appeared to have grown, although just a tiny bit. That was the mixed news, color it gray. Did that growth happen before the Avastin and the drugs kicked in? Or is something else going on?

I have to admit, I really didn't know how to react to this news. I should have been happy. It's the kind of news I never expected to hear. But for some reason, I was sort of emotionally blank. Maybe it was the prospect of staying on chemo for the foreseeable future, with maybe radiation for the spinal tumor. Maybe I was just tired and afraid to get too excited. After all, there's been so much bad news.

But I had another conversation with my doctor Tuesday afternoon. After he and other specialists looked at the scans, they think there are signs that my spine may actually be healing. That would mean that the tumor has been affected in some way by the chemo. So all in all, I did pretty good.

What does this mean? We're going to keep doing what we've been doing — more Avastin, more chemo — and hope that this trend continues. The more I think about this now, I have to admit that I am in a place I never expected to be. I am a long, long way from being cured, and that probably is still not in the cards. But this is the first good news in ten months. That counts.

More than anything else, I want to thank all of you who wrote in with good wishes, and all of you who kept me in your thoughts and prayers. I think that I owe much of this good news to all of you. And by extension, I know that we are keeping each other, the entire cancer world, in our thoughts. For those of you out there fighting this same battle, don't give up, because we haven't given up on you.

Leroy Sievers

6:14 AM ET | 10-25-2006 | permalink | comments (48) | e-mail post

The Waiting

I'm waiting for the phone to ring. I'm writing this late Monday afternoon. I had the scans earlier today, and now I'm waiting for my oncologist to call with the results. As all of you who have been through a day like this know, these days can be emotionally exhausting. The tests themselves take barely five minutes. They run you through the machine once, inject the dye into you, and then run you through again, and that's it.

As I was leaving, one of the technicians in the control room waved. We've seen each other there before. I appreciated the wave, but what I really wanted just then was to see what he saw. I wanted to see what was on the screen. But no such luck.

There's a lot riding on the results of today's scans. They will determine what happens to me, at least in the near term. More of the same? New drugs? It's working, it's not working, it's just maintaining the status quo? All good questions, it's the answers that are important.

So I'm waiting. We've all talked before about how excruciating these waits can be. But there's nothing you can do. My doctor is very good about calling when he gets something. I think all the doctors know how difficult the waiting is for the patients. Even if it's bad news, it's better to know.

So on to more important things. Yes, the cheesesteak was excellent. And for the surprising number of you who asked, I go for provolone cheese. I don't want to offend any of the purists from Philadelphia, but I figure I have enough health problems without eating cheese whiz. Plus, the bright orange color of that stuff is a little scary.

Leroy Sievers

6:50 AM ET | 10-24-2006 | permalink | comments (15) | e-mail post

A War That Calls for New Tactics

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

I spent a good part of my adult life going to bad places where people did bad things to each other. If people ask, I say I've covered fourteen wars. That's close enough. A few specific events stand out in my memory. Others have just blurred together.

There were plenty of times when death seemed imminent. Some happened very fast, in firefights, for instance. Others went much slower: the time in Bolivia when it took us half an hour to convince a group of cocoa farmers not to beat us to death, the guy in Haiti who held an AK-47 against my head for fifteen minutes while we talked — talked about journalism, actually.

I had a secret. Visualization. That's a standard trick for athletes. Visualize yourself performing well, scoring the winning basket, goal, whatever. See it over and over in your head until you believe it. Then, doing it for real will be simple.

What I visualized was my survival.

Before I went into a combat situation, I'd daydream about what I'd do when it was over. I'd play that fantasy over and over in my head until it became very real, almost like a memory. And then I knew I would survive, because I'd "seen" it. All I had to do was get it over with for real.

It's funny, now that I think about it... I haven't done anything like that since I got cancer. I haven't visualized myself being cured, or being told I'm cancer-free. I guess my ability to see into my own future, even if it's a made-up future, has gone away.

Now when I look ahead, it's all cloudy. I don't know what will happen. I don't even know what kind of future to imagine. I'm realistic. I know how this will most likely end. I'm not without hope, but I try to keep my hope in check. I don't want to get my hopes up only to have them dashed by cold hard medical reality.

If I did try, I guess I'd visualize things going easily. The side effects from the chemo wouldn't be too bad. If and when the end comes, it wouldn't be too bad, either. I think that's something cancer patients do fear: that our deaths will be painful. I don't think anyone wants to die in a hospital hooked up to all sorts of machines.

I think the key to my old trick, the one that let me go into combat relatively unafraid, was that I believed I could somehow influence my future. Well, one thing cancer does is make it clear that for us, at least, control over our lives is something of an illusion. We can still control the little things, but the big issues? Out of our hands.

So I guess I need to find a new trick. They say armies train to fight the last war. Well, for me, that kind of war is in the past. I'm in a new one now, one that calls for new tactics and new tricks. I just haven't quite figured out what all of those are yet.

Leroy Sievers

6:35 AM ET | 10-23-2006 | permalink | comments (15) | e-mail post

CT Scans and Cheesesteaks

So this coming Monday is scan day for me. That means another trip up to Baltimore to Johns Hopkins. I remember as a kid we all used to go to the family dentist, a traumatic experience for everyone involved. But after we were done, we'd all dash down to this great ice cream parlor located in the dentist's building. Missing, or ignoring, the irony of ice cream right after the dentist, my parents would treat us to hot fudge sundaes. I remember the sundaes to this day. I really don't remember much about the dentist.

The trips to Baltimore aren't bad — it's only about an hour away. And we found a little restaurant just a couple of blocks from the hospital. It looks pretty run-down — the kind of place that you know will have great food. And it does, an excellent cheesesteak. I don't want to get into a fight with anyone from Philadelphia. I will concede that Philly cheesesteaks are the best, but this one is pretty damn good. It's a treat after the hospital. Just like the sundaes.

The scans, as many of you know, are pretty much painless. They inject a dye into you that can make you feel all warm inside, not necessarily in a good way. My real concern each time is that I really don't fit in the CT machine. I have to hunch my shoulders to make it through. I can't imagine what it's like for a football player who gets sick.

And that's pretty much it. The scans take very little time. And then you wait. Now, the last time, my doctor found me in a hallway. "Let's find a place to talk," he said. That's when I knew it was bad news. And sure enough, it was. As I've said several times, I'm doing my best not to get my hopes up this time. I tell myself that if the new treatment has worked, that's great. If it hasn't, I'm really no worse off than I was before. And then I guess we'll figure out what to do next.

I'm supposed to see my oncologist Wednesday to get the results. As you all know, having to wait like that is excruciating. But my guess is that I'll know pretty quickly. If he finds me on Monday, then I'll know. If not, I can wait until Wednesday. And either way, I can't wait to have one of those cheesesteaks.

Leroy Sievers

6:48 AM ET | 10-20-2006 | permalink | comments (37) | e-mail post

One of the Most Personal Decisions You Can Make

Andrea wrote in the other day with a question that comes up almost every day.

"When people suggest alternative treatments (and clearly you receive all sorts of suggestions in this forum since not a week goes by without some posts), how do you respond? I don't mean to put you in the hot seat, but when well-meaning people suggested various supplements, diets, etc. as my husband continued with traditional treatment (chemo, radiation, surgery), some people acted angry and some even said they didn't think our choices were correct."

As I'm sure you've all seen, a lot of people do write in with suggestions about alternative therapies: diets, drugs, all sorts of things. And yes, some of them do seem to get angry if you don't embrace their suggestions.

I think that how you face cancer, what you choose to do to fight it or not, is one of the most personal decisions you can make. This really is a life and death struggle, and how I fight it is my business. Period.

I know that these suggestions, and all the ones we get every day, are well-meaning. People want to help. They want to offer up ideas that might work. Who can fault that? I look into some of them. Some of them I don't. As I've said before, I'm pretty much a traditionalist when it comes to medicine. I am sticking with the chemo right now, in spite of all of the problems that come with it. As I see it, that seems to offer me the best chances of hanging on a while longer.

But nontraditional treatments may be exactly right for someone else. There is so much we don't know about how the human body works. I think it's worth it to look into all sorts of things. The one thing no one else has the right to do? That's to get angry with my choices. We're talking about my life, and eventually, my death. How I face that, how I fight, is up to me. While I don't expect everyone to agree with the choices I make, I do expect everyone — and I mean everyone — to respect those choices as my own.

Leroy Sievers

7:03 AM ET | 10-19-2006 | permalink | comments (19) | e-mail post

Fighting Brushfires

Well, I screwed up. I meant to set aside a particular note that came in because I wanted to write about what was said, but now I can't find it. I'm sorry, because I may not do justice to what the author said. She used one phrase that stayed with me. If I remember correctly, she talked about the danger of "letting down your guard."

Many of you who have gone into remission, or whose cancer seems to have gone away entirely, have talked about the same thing: that feeling that it's still out there, or more accurately, still in there, just biding its time, waiting to show itself again. It doesn't seem possible to ever really relax, to ever think that, in fact, you're over it.

It's funny, after my first diagnosis and surgery, I never thought about the cancer coming back. After four and a half years of clean checkups, I figured it was something that happened and wouldn't happen again. Sort of like getting the chicken pox. Once you get over it, you don't have to worry about it again. But I was wrong. It did come back.

I can understand that fear. After going through a bout with cancer, it's hard to totally believe it may not come back. It often does, and I guess the heartbreak of that recurrence is worse the second time. At the same time, we can't all live our lives in fear — of anything. It's easy to say that, not as easy to do it.

Those of us who still have active cancer in our bodies feel a little of that same fear, that reluctance to "let down our guard." Having cancer can be a little like fighting a brushfire. You put it out in one place only to have it show up in another. You're constantly on the lookout for that next hot spot. My doctors thought I had a tumor in my liver, but it turned out to be harmless. One hot spot extinguished. Then a new tumor showed up on my spine. New problems.

It's not like I can really do anything about those new flare-ups. As my doctors said, it doesn't matter if you have one tumor or six, they're going to attack them all. But that doesn't make that feeling of unease, of needing to be watchful, go away.

I guess peace of mind, a life free from worry, is another thing that cancer takes away from us. I guess we're sort of like those guys in the old Western movies who always say, "It's quiet. Too quiet." You know that as soon as they say it, they'll get hit by an arrow. I think a lot of cancer patients flinch ahead of time, because we know what it feels like when that arrow strikes home.

Leroy Sievers

6:37 AM ET | 10-18-2006 | permalink | comments (10) | e-mail post

It Would Be Nice to Get Some Good News

I find myself in a strange position, facing something that I didn't expect to confront: hope. When I was diagnosed with the brain tumor, lung tumors and later, a tumor on my spine, the doctors were pretty clear. "Cure" was not in my vocabulary. Same for "remission" or "disease-free." We were fighting for time, and nothing more.

And then they put me on a new drug, Avastin. It has shown some success in actually shrinking the tumors. A number of you have written in to say that it worked for you. I've been taking it along with my regular chemo for the last nine weeks. And next week we'll find out what's happening inside me.

Avastin acts differently than the chemo drugs, which attack the cancer cells. Avastin tries to starve the tumors by reducing the blood supply.

I don't really care how it works, other than hoping that it somehow makes the cancer cells really uncomfortable. That seems only fair.

As I think about those scans next week, I am trying very hard not to get my hopes up. I tell myself that if it's not working, then I am no worse off than I was before. And that's basically true. If it is doing something positive, then I'll deal with that when I know.

I had come to grips with the fact that my case was terminal. That doesn't mean that I am eager for death. I'm not. But I accepted the judgments of my doctors. I was at peace with that. Now even in the best possible case, I don't expect that Avastin will cure me, but it would be nice to get some good news for a change. I guess I'm having trouble getting my head around the idea that we might make some progress. I'm not sure why, but I'm just having trouble believing that there could be some good news. Either way, we'll find out next week.

Leroy Sievers

7:03 AM ET | 10-17-2006 | permalink | comments (20) | e-mail post

A Strange Land, Now Familiar

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

Ten months ago, when I was diagnosed with this latest round of cancer, the disease took over my life. It consumed everything. Whatever I did, thought, planned, hoped for, feared — everything passed through the prism of cancer.

I told myself at the time, and I told others as well, that I wasn't my disease. But I don't think that was really true. I think to most people in my life, I stopped being me. I became a cancer patient. That scared them. Heck, it scared me.

And everything really did change. I had to find a way to work around the chemo schedule, find a way to still be productive — even on the worst days. My body changed. Terms like "CEA," "CT scan" and "MRI" were new additions to my vocabulary. I became a stranger in a strange land.

A lot has happened in these last ten months. But maybe the biggest change is that the novelty — I really mean the total disruption of my life — has mostly worn off.

My medical treatment has become a routine. Chemo on Monday, blood work the following Monday, scans at regular intervals. I take the pills about the same time every day. It's part of my morning, just like shaving or brushing my teeth, and part of my evening, too. I know how to schedule things in three-week cycles to match the chemo. That first week, I'm not worth very much. Second week, better, I can do just about everything. The third week, my week off? Life's almost back to normal. That's when I try to do more social things, see friends, live my old life.

The fears are not as powerful as they used to be. For almost a year, I've been having conversations about my death, and when and how it might come. The more you talk about anything, the more it loses its power to frighten or depress you — even death. I know much more about the disease now, so a lot of the mystery about what's actually happening inside me is gone, too.

One person wrote in to the My Cancer blog saying that cancer makes us lose our vanity. I think that's certainly true. One of my doctors said having cancer means more people will want to talk to you about things you don't want to talk about. He was absolutely right. But I'm well past any squeamishness like that now. You want to talk about the disease — mine or anyone else's? No problem.

Now, this doesn't mean everything's just fine. It isn't. But it's funny what we can get used to. Ten months ago, when the words "brain tumor" and "lung tumors" were still echoing in my head, the doctors said a cure was unlikely. But their goal was to enable me to live with my cancer as long as possible. And that's what's happened. I have learned to live with my cancer. I guess I'm no longer a stranger in this strange land of cancer. Now it's my home.

Leroy Sievers

6:52 AM ET | 10-16-2006 | permalink | comments (12) | e-mail post

Gutting Your Way Through

This is one of those days where I'm not feeling particularly inspirational or profound. Or inspired either, I guess. I'm just tired. When I'm done writing this, I think I'm going to take a nap. But I know that a nap won't really help. The fatigue comes from the drugs, so sleep doesn't make it go away.

Over the past several years, I had gotten used to getting by on very little sleep. My normal day at Nightline went from 9:00 a.m. to midnight. Take away commuting time and a little normal time, and that didn't leave much time for sleep. And then there were times in the field when we didn't sleep at all. I think the longest I went without more than an hour a night was five days. That was in Kosovo. I remember on the last night, I was reading my notes and I could see words on the paper. I could read them — only problem was that they weren't there. I was hallucinating.

But this fatigue is different. It goes deep, to the bones. The chemo drugs just sap your strength. Normal activities, even at a reduced level, can be exhausting. I know that in a few days, it will start to get better. I will get more energy; I won't feel that total sense of exhaustion. I'll be able to function better. But right now, I'm just tired.

This is just one of those days that you have to gut your way through. Do the best you can and try to stay confident in the idea that tomorrow will be better. We all talk about how we try to live each day to the fullest, to appreciate every day we're given. It's hard to do that on a day like this. But the sun is out, the leaves are starting to change colors — I'll get through this. But right now, it's naptime.

Leroy Sievers

7:18 AM ET | 10-13-2006 | permalink | comments (20) | e-mail post

Fine for TV, But Not for My Life

I think it's something that only people who don't have cancer say. I've heard it in some of the posts that people have sent in. I've even heard it on TV. The main character on CSI was talking in one episode about how he'd like to die. He said that he would like to have cancer so that he would have time. Time to say goodbye to the people who were important to him — time to prepare.

I guess that makes some sense unless, of course, you really do have cancer. I think most people would probably like to die at peace in their sleep. But of course, a death like that would not allow you to say what might need to be said. No way to tie things up neatly.

But cancer really doesn't allow that either. And that's why I think that this whole idea that it's a good thing to know that your death is coming is just wrong. For one very simple reason. We've talked about prognoses in the past. No matter what the averages say, you never really know how much time you have left. But however much time there really is, I don't think that any of us really plan on spending that time getting ready to die.

I am not going around to my friends and saying goodbye. There will come a time for that, I'm sure, but it's not now. I think about my life, what I did right and wrong, but I did that before I got cancer, too. I think that people that do have cancer spend — or at least try to spend — whatever time they have left living. Not preparing for the end. You think about it, of course, but that idea that was so appealing to the writers of CSI? That doesn't work in reality — at least not for me.

I guess all I'm trying to say is that a cancer diagnosis doesn't mean it's all over. It doesn't mean it's time to start giving things away, having final conversations, none of that. That may be fine for a TV program, it's not fine for my life.

Leroy Sievers

6:38 AM ET | 10-12-2006 | permalink | comments (17) | e-mail post

What Do You Know Now?

Recently I wrote that because of my experience with cancer, I know things that others, who luckily haven't had to go through it, don't know. But I had trouble saying what those things are. Well, Kelley wasn't going to let me off the hook. She wrote in to ask:

What are the things that you know? You said that you couldn't describe these things, but can you give us a hint?

I think that a lot of the things that having cancer has taught me I knew before, but only intellectually. How many times did we all say, "Oh yeah, time to smell the roses, but I'm late for that meeting — I need that report right now — I'm on deadline and I have to pick up my dry cleaning." We gave thoughts like that lip service, but not much more.

So what have I learned? I have learned that you can find a tiny spot of joy, even on the bleakest day. I know that doing our best is all that can be asked of us. I know that death is real. Even though I had faced death before, I never thought that it would happen to me, at least not for a long time. Now I know that death comes looking for us on its own schedule, not ours. I know how much my friends and loved ones mean to me, and I know how important it is to let them know that. I know how important honesty is, especially when the news is bad. And I know that my life is very, very different than most of my friends', but that all of us — all of you reading this — are sharing that life, too.

So those are some of the things that this ordeal has taught me. Or reminded me of. What about all of you? What have you learned? What do you know now that you didn't before? Tell me.

Leroy Sievers

6:47 AM ET | 10-11-2006 | permalink | comments (37) | e-mail post

A Duty to Talk About It

So many people have written in to say how much it helps to talk about cancer. And so many of them are caregivers, sons or daughters or friends, and it seems like every one of them says some variation of "My [fill in the blank here] really wouldn't talk about it. I never knew what they were thinking." I have to admit that my reaction to that is "How could they NOT talk about it?"

I don't see how you could keep quiet about something that is so literally life-changing, and not just for the person with cancer, for everyone involved. Sometimes families have to move to be closer to the doctors. Sometimes a job has to be passed up, or a lesser job taken. Maybe I'm just bad at keeping secrets. I don't think I could not talk about it. I guess that's obvious when you look at this blog.

Years ago, no one really talked about it. Obituaries often said something like "after a long illness" or something equally vague. The word "cancer" was not to be spoken aloud, certainly not in polite company. I can only imagine how much more difficult those attitudes made an already difficult and sad situation.

But clearly there are still a lot of people out there who don't want to talk about it. And so I'm going to address this piece to them. Do you think that you're making it easier? That you're shielding those around you from a truth that can be ugly? I think that talking about this disease does help the cancer patient, there are just some things that you have to get out, whether it's anger, sadness, confusion, or most likely all of the above. But talking about it really isn't for you. It's for the people who care about you.

You owe them that much. They are your friends, family, loved ones. And with their love, they have earned your trust, and your honesty. Some of them may not be able to take it. Some may drift away. But they still deserve the truth. We don't have the right to keep something so important, so fundamental, to ourselves.

When you talk about it, there will be tears, yours and theirs. They too will feel the anger, the hopelessness, the confusion, that we feel. But no matter how painful that is, I guarantee that having to stand by and watch, and know something's wrong, but not what, or how they can help, that is truly more painful.

There's no stigma to having cancer. It's just one of those things that happen. But I truly believe that there is a stigma to keeping the truth from those who care about you. No matter what your motives, to spare them, to spare you from having to say it out loud. None of those count. They have earned the truth. They have earned the truth. Jack Nicholson in A Few Good Men is wrong. They can handle the truth.

Leroy Sievers

6:00 AM ET | 10-10-2006 | permalink | comments (24) | e-mail post

The Cancer Balance Sheet

The balance sheet keeps changing. Life is a continuing set of trade-offs. Does the good outweigh the bad? It's easy for cancer patients to say we've gotten a bad deal. How is it that we could be going along blindly and then all of a sudden, on one fateful day, have everything change?

We add up the losses. The first thing we lose is our future. It becomes something to be counted in months, maybe years if we're lucky, but certainly not decades. And by losing the future, we lose some of our dreams. We lose the sense that all things are still possible. Life becomes narrower.

We lose sleep. Sometimes because we're just too sick to sleep, there's no way to get comfortable. But usually it's because sometimes night is the time when we think about what has happened to us, what is happening inside our bodies. We think about our deaths. Is there a cancer patient who hasn't already thought through his or her own funeral? Who should the speakers be? What might they say?

We lose some of our strength, certainly physical strength. Sometimes we're just too tired to work out. Sometimes the pain, or nausea, or just that feeling of the chemo-blahs is too much for us to overcome. The treadmills, the weights, all sit in the corner, unused.

It's easy to lose our optimism. How can you keep a positive outlook? How can you believe things will turn out okay, that tomorrow will be better than today? The cancer patient is bombarded with bad news from that first black day of diagnosis. So many months to live. Tubes to be inserted, medicines to take, the old lifestyle lost, replaced by a new one that is, quite frankly, a whole lot scarier.

When you look at the life of a cancer patient, it certainly seems that Death has put his finger on the scales, weighing them down in the "bad" direction.

Can anything possibly balance out what we've lost to this disease? Can anything replace the parts of our lives that have been stolen from us?

So is there anything on the other side of the scales? We make new friends. We reconnect with old friends. We learn again, if we've forgotten it in the crush of our daily lives, just how important a kind word, a touch, a look can be. We learn that even if they say the wrong thing, our friends are trying to reach out to us.

We look at life differently. Each day becomes precious, even the bad days. We all talk about living life to the fullest, stopping to smell the roses. You know the cliches. But when you can hear the clock ticking, enjoying the little things becomes even more important, and even more satisfying.

We learn things that other people don't know. I said to a friend the other day, "I know things that you don't know." He asked me what, and I couldn't really answer him, not in any coherent way. I just know things.

And in the end, we discover, or rediscover, our strength. It takes so much to get through the physical challenges of cancer. But the mental challenges are even tougher. We learn we're stronger than we ever thought. We can get through this. We can get our friends and loved ones through it, too.

So can any of these things, or all of them taken together, outweigh the bad? Or at least balance them? I don't know. I know that for five years, I worked 15 hours a day, sacrificing my life for my job. Was that a good balance? I know I'm a different person now, that I wouldn't make that choice again. For that matter, I'm a different person than I was 10 months ago, when I was first diagnosed.

When my life is put on the scales to be judged, will it balance out? I think so. Cancer is just one part of my life. It's not the whole thing.

Leroy Sievers

6:06 AM ET | 10- 9-2006 | permalink | comments (14) | e-mail post

Blessed with a Life Worth Living

I ended the blog yesterday by saying that "I am all right." And that prompted this posting from Edward.

Please dont take what I am about to say the wrong way. But, how can you say that you are "alright" when your body is critically under attack? Or, do you realize that it is under attack?

Oh yeah, trust me, I know my body is under attack. I know it every minute of every day. I know that it is under attack in ways that I cannot see, but I know what's in there, and I know what those tumors are doing. And I know that it's an attack that will probably, ultimately, be successful.

So when I said that I am all right, that wasn't some sort of delusion. I'm not in denial. Far from it. No, what I meant was that, in spite of the cancer, I still have a life, and a life worth living. It's more difficult than my old life. It's certainly more complicated. It's far different than the life that I expected to live. But it's my life.

I'm still able to work. There are certainly bad days, more than I would like, but even on those days I can still accomplish things, can still find something that makes me smile, or nod, or just think. I am blessed by the people in my life. And in spite of the cancer, in spite of everything that comes with it, I still have it better than so many others.

Is this a life that I would choose? Never. None of us would. But it's the life that's been given to me, and so it's mine to deal with.

So ask me how I am on a bad day, and I might whine a little, feel sorry for myself, be grumpy. Ask me on a good day, and you'd never know that anything was wrong with me. However I say it, whatever tone of voice I use, the answer is still going to be the same: "I'm all right." And I mean it.

Leroy Sievers

6:00 AM ET | 10- 6-2006 | permalink | comments (16) | e-mail post

'Answer Hazy, Ask Again Later'

I ran into a friend of mine the other day. We talked about the usual stuff. She had just graduated from college and was looking for work. And then, of course, the conversation turned to me and my cancer. I told her that the chemo was tough, but that I was coping as best I could. And then she said, "But you're going to get better, right? You're going to be all right?" And I didn't really know how to answer. Because I don't know.

I know what the doctors say. A cure is highly unlikely. Don't get your hopes up. We're buying time, and who knows what advances will be made in the meantime. I'm not criticizing them, that's what the medical conventional wisdom says. We've talked about prognoses in the past, how they don't apply to any one case, they're just averages. One person wrote in recently to ask why doctors even give them. Well in my case, I badgered my doctor until he did. That's really what I wanted to know. How long?

Well the first prognosis had me dying several months ago. The next one said in the next two months or so. Unless I get hit by a bus, I think that's going to be about as accurate as the first one. But getting better? I just don't know. To be honest, I don't really think about it. But then I don't really think about dying either, at least I try not to.

So when I try to look into the future, as the old Magic 8-Balls used to say, "Answer hazy, ask again later." I guess that I'm assuming that the answer to my friend's first question is "no." I didn't want to say that, of course. Am I going to get better? I do hope that happens, that the chemo may actually make some headway against those tumors. But it may be that I will just be able to manage the cancer, to live with it, for however much time I have left.

But as for her other question, "You're going to be all right?" The answer to that one is "Yes." I am all right.

Leroy Sievers

6:37 AM ET | 10- 5-2006 | permalink | comments (12) | e-mail post

Betrayed by My Body, Not by Life

I was going to write about something completely different today, but when I saw the posting by a man named Troy, and the questions he asked, I threw the other piece away. Actually that's not true, it will probably show up tomorrow. But here's what Troy asked.

How hard is it to not feel betrayed by life? How can illness possibly be part of a plan? You always hear people say, "Everything happens for a reason." I just don't see the reasons.

My father, like so many others, taught me that you should never talk about religion and politics. These days, it seems like the two are inseparably linked, but that's a whole different story. But Troy's questions pretty much go to the heart of what any of us believe.

I can only answer for myself. Do I feel betrayed? I sometimes say that I feel that I have been betrayed by my body, that it is trying to kill me. But betrayed by life? Never. I'm not angry about my cancer, that may be the one emotion that hasn't come out of this. But I don't blame anyone or anything. I accept what has happened to me, and to so many others. But there are so many other people who are carrying a much heavier burden, who are facing much more difficult challenges.

There are people whose medical conditions make the simplest of actions, the ones we don't even think about, into an ordeal. And they live with that every day. There are people all over the world for whom every day is a struggle just to survive, to find something to eat, to find a way to avoid death at the hands of killers. I've had a good life. No, let me correct that, I have a good life. My cancer is just something bad that's happened, but it's part of my life, and I'll try to deal with it the best I can. After all, I've had plenty of good things happen to me, too.

Is it part of a plan? Is there a reason? I can give the medical reasons, but that's not what Troy is asking. And this is where it all comes down to what we believe. Is there a plan for us? Is that plan something that we can understand? Clearly, those questions can only be answered in terms of faith, or lack thereof. I don't think I'm being punished, I don't think I did anything to deserve my cancer.

There are so many things that we cannot understand. I had the good fortune to be born in this country, where I can worry about my weight, where I have access to the best medical care in the world, where life is pretty easy. There are millions of people in Africa and war-torn areas around the world who were born into a world where life is short and death is swift and brutal. Did they deserve that? Of course not.

So in the end, I fall back on one statement that I repeat to myself pretty often. "We are not given the burdens we deserve, we are given the burdens we can bear." I can bear this burden, this disease, for a while longer. In the meantime, I will try to live the best life, to be the best person I can be. I have made mistakes in my life, I have done things that I'm not very proud of, but the cancer has nothing to do with that. Cancer is just a disease, not judge and jury. Is there a reason? I don't know. But I do know that there is still a reason to get up each morning, take a deep breath, enjoy the sunrise, and then go fight like hell.

Leroy Sievers

6:57 AM ET | 10- 4-2006 | permalink | comments (9) | e-mail post

My New Way of Life

The following is a commentary from Morning Edition, Oct. 3, 2006:

"My doctors are trying to kill me." That's how I began one of my first commentaries about having cancer. That was about nine months ago, and they haven't succeeded yet. But I haven't been cured either.

I was talking about chemotherapy. Every three weeks, I go into the hospital and sit in a nice chair while poisonous chemicals are pumped into my body. The whole process can take five or six hours. Then it's pills twice a day for two more weeks.

Nine months later, chemotherapy has become a way of life. My life.

It's hard for me to remember what I felt like before all this happened. The drugs never really leave your system. Even on my weeks off, I get the nausea. My fingers still tingle, and so do my feet. That's constant. And the effect is cumulative. I think your body does build up a tolerance for the drugs. But you just keep pumping in round after round. Your body never gets a break.

So you change the way you live. When I wake up in the morning, I feel pretty good, as long as I'm lying in bed. But once I get up and move around, the nausea comes on strong. It takes me a couple of hours to really get going. Eating is the last thing I want to think about in the morning, but you have to take the pills with food. That means I have to find something remotely appetizing for breakfast. And then fight through the fatigue to get going. So I don't schedule anything early in the morning. No business meetings, no errands.

The middle of the day is when I get most of my work done. I try to cram as much as possible into those few hours when I feel pretty good. But even a light schedule, a meeting or an interview, some time in the office, that can be exhausting. Sometimes I'll get home from what 10 months ago would have been not a half-day, but a quarter-day for me, and I'm just totally spent.

The evening is sort of a repeat of the morning. The nausea comes back. I wonder sometimes if it isn't at least partly psychological. My body knows what's coming, so my stomach might as well get a head start on feeling bad.

And I'm doing all this to what end? I said at the beginning I haven't been cured. Conventional medical wisdom is that I won't be cured. What all of this is about, is buying time. The new drug I'm taking is supposed to actually shrink the tumors. I'm trying as hard as I can not to get my hopes up. I don't want to be too disappointed if it's not working. OK, I know I'm kidding myself, I will be hugely disappointed.

I'm not looking for pity, far from it. This is just the direction my life has taken. But I do remember enough of how I felt before I had cancer, before my body was filled with poison, to wish every now and then that I could get my old life back. Even if it was just for a few days. That would be nice.

Leroy Sievers

5:03 AM ET | 10- 3-2006 | permalink | comments (37) | e-mail post

What Do You Say to Someone with Cancer?

Over these last couple of months, we've talked a lot about what we, as cancer patients say to others. The whole truth and nothing but? Or a slightly watered-down version? And in the last couple of days, we've been talking about what other people say. Does it help, or in some cases, and totally inadvertently, does it hurt?

A woman named Paula wrote in to ask "What would you rather they say?" Excellent question, and I don't have a ready answer for her. Sometimes I don't need others to say anything, sometimes I just need them to listen. I appreciate it when they say they're sorry, and that's when I find myself comforting others rather than the other way around. It's hard to see the sadness in the eyes of others, I truly wish there was something I could do or say to make it easier.

I don't really need advice. Some people want to suggest a particular form of treatment, or diet, or something like that. I listen to all of that, and do check out things that sound promising. But it's hard to keep track of every new drug or treatment or diet or whatever. It all becomes a little overwhelming at times, but you also don't want to miss something important.

So to get back to Paula's question, what do I want others to say? There is no right answer. It depends on me, my mood, how I'm feeling, my emotional state, and it also depends on who it is that I'm talking to. Some people don't need to say a word, I already know how they feel. It doesn't need to be spoken. Some talk about everything but my cancer, and sometimes that's exactly what I need too. There are no magic words that I need to hear. Yes, there are some things that shouldn't be said, but sometimes are. And I don't think that people are insensitive, I think it's hard to know what to say.

Before I set off down the cancer road, I'm sure that I said some really stupid things in those situations. I just didn't know any better. So maybe when it comes down to it, it's not the words that matter so much, maybe it's just the act of trying to say something, for our sake, and for theirs. Maybe it's just the act of trying to reach across that dividing line that seems so huge to all of us on both sides, maybe that's what's really important.

Leroy Sievers

6:39 AM ET | 10- 2-2006 | permalink | comments (23) | e-mail post