In Good Company

I guess today is going to be decision day about chemo. But first, I want to thank all of you for the notes of encouragement and support that you've been sending in. Those all mean so much. And whenever we talk about the decision about what sort of treatment to try next, there really seems to be a common theme in all the notes: Make the best decision you can, then move forward and don't look back. Don't torture yourself with "what ifs." That will just make you crazy. This is easy to say, but not always easy to do. After all, these really are life and death decisions. And the longer your fight with cancer goes on, the fewer chances there are to make these decisions. Your options narrow.

I do have faith in my own judgment. Even if I don't see it now, I'm pretty certain that the right path will make itself known to me in time.

When you're standing at a fork in the road, once you pick a direction, head down that road confident that you made the best decision you could. Agonizing over what might have been, what would have happened if you'd decided differently, well, all that just eats up your time and energy. Energy you need to follow the path you chose.

This doesn't mean that you can't change your mind or that you don't listen to new information. It just means that based on what you know at the time, you'll know what to do.

So when I decide later today what path to take, I make that decision knowing that so many of you have walked this road before me, and that so many of you are walking beside me. And that makes me comfortable — and confident. I know I'm in good company.

6:32 AM ET | 01-31-2007 | permalink

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Decision Day

Tomorrow is decision day. I'm going to have to decide whether to go back on chemo, and if so, what kind of chemo. I know what my oncologists want me to do. They want me to go to the maximum dose of the next set of drugs. The side effects from this regimen would be worse than they were for the drugs I took before. And yes, I would lose my hair. It's funny how much that one bothers me. It's not like my hair is so great, and I've certainly lost plenty of it over the years.

It really bothers me for only one reason: Losing my hair means I would look in the mirror and see a cancer patient. Now, I know that so many of you have already gone through this. And in the greater scheme of things, it really is pretty minor. But I guess one thing that has gotten me through this fight so far is that I look like me. I look like the person who didn't have cancer. That's one thing that hasn't changed in my life.

There are real and more important issues to face. Assuming that the procedure last Friday killed the tumor — the other two are scheduled for death in February and March — wouldn't that have some bearing on which chemo to take? If I have no active tumors, at least none that we can see, do I still need to take the same dosage I would if those tumors were alive and healthy? That just doesn't make sense to me.

On the other hand, the argument for chemo does make a fair amount of sense. It's virtually certain that there's more cancer in my body. We should try to kill it now, if we can. I get that. Only problem is, we have no idea if this chemo will be effective at all. It could work, or it could work for just a little while, or it may not work at all. The only way to find out is to try it.

Part of me thinks we should save the chemo for when I really need it. If, or more likely when, new tumors show up, isn't that the time to hit it with everything we've got? After all, it's only going to be effective for a while before the cancer finds a way around it. Shouldn't we save that? Because when I've done this chemo, there really aren't a whole lot of options left. The other drugs out there have pretty low levels of effectiveness. Or can I get by for some time attacking the tumors with the Radio Frequency Ablation and standard radiation?

I don't know what the answer is. But I'm going to have to find it soon. If I decide to go ahead with the chemo, I'll start on Friday.

4:33 PM ET | 01-30-2007 | permalink

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He Had Me at 'Kill'

I was lying on the table, part way into the CAT scan machine. I was a little groggy, but still awake. I thought I'd been lying there for a while, and wondered when they were going to start the procedure, when I heard a voice say, "OK, we're about two-thirds of the way through this." Good drugs will do that.

I was getting a relatively new type of treatment: Radio Frequency Ablation. Basically, they stick a needle through your chest into your lung and into the tumor. Then they burn the tumor out from the inside.

I'll never forget the first time I met with the doctor who was going to perform the procedure. He said, very matter-of-factly, "I'll kill the tumors." Kill. Dead. Done. The world of cancer is usually so gray. "We hope to shrink the tumor." "We hope to see some positive results." So it was a bit of a shock to hear him be so certain. He had me at "kill."

I have three tumors in my lungs. We only did one of them Friday because the doctor wanted to concentrate on the largest one to make sure he got it. And while I was a little disappointed that he couldn't get a second one, now I'm glad. Because getting stabbed with a needle through your chest hurts. A lot.

It's easy to forget how everything in our bodies is connected. Stick a needle through your chest and you hit muscles that are connected to other parts of the body. I'm sitting here, not in terrible pain, but with a dull pain over my chest and shoulders. Was it worth it? You bet.

Now, I may be a little premature on that part. We won't know if they got all the tumor for about three months. You have to let the tissue heal before you can take another scan. In the meantime, in the coming weeks, I'll have the procedure two more times to get the other two tumors. To kill the other two tumors.

I recently had radiation that was supposed to take care of the two tumors on my spine. If this procedure does kill the three tumors in my lungs, I may, for the first time in more than a year, have no active tumors in my body. There's one of those gray words: "may." The oncologists are always worried about the cancer they can't see. Rogue cells floating around your body, looking for a place to call home. Tumors that may be growing, but are too small to see on the scans.

So they want me to go on a fairly serious chemo regime, a different one than I took most of last year. I have some questions about it. If I don't have any visible tumors, why would I still take the same maximum dose of the chemo? Maybe we should save the drugs for when tumors come back? Or am I just trying to find reasons not to go back on chemo? There's no clear answer here. At least I don't see one yet.

In the meantime, I'm going to trust my doctor. Every twinge of pain in my chest is a reminder that I have one less tumor. I only hope the cancer cells felt even more pain.

I do have one complaint. The instructions for the antibiotics I'm taking say "no chocolate and no caffeine." I'm willing to make some sacrifices in my fight against cancer, but c'mon, isn't that asking too much?

6:12 AM ET | 01-29-2007 | permalink

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Striking Back

So today's the day. First, I want to thank all of you for all the kind wishes and thoughtful notes. That support helps so much. The risk from this procedure is really minimal. The thing they worry about most is a collapsed lung. I've had that happen before, and it really wasn't difficult, so I'm not worried. Most likely, I'll spend tonight in the hospital; they like to keep an eye on you. The biggest challenge will be finding a gown that actually fits. I don't think a miniskirt-length hospital gown will be a good look for me.

I really am excited about this procedure. Like many of you, I've had all sorts of procedures before, but most of those were intended to fix a problem. I feel like this is the first time we're actually striking back, taking a pro-active step. As I've said before, I tend to think of the tumors as somehow having feelings, and it is my fervent hope that when the doctor sticks the needle into them, it will hurt like hell.

We won't know how successful this is for about three months. It takes that long for the healing process to clear up enough that scans can actually see what happened. And the beauty of this procedure, as I understand it, is that if they miss something, or need to clean up the area where the tumor had been, they can do it again. And again, if necessary.

As always, when dealing with cancer, there's another issue, another decision to be made right around the corner. Next week, I'll have to decide what to do about the next round of chemo. It seems almost certain that I'll start the new regime that my doctors are suggesting. To be honest, I'm not looking forward to that at all.

But that's next week. For now, I'm going to hope that today's procedure brings good results. The rest can wait. I'm not going anywhere.

5:56 AM ET | 01-26-2007 | permalink

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'Buy the Ticket, Take the Ride'

Am I kidding myself? I have to admit that recently, I've started to think about the future. Things I could do. Things I'd like to do. But then I have to stop myself and give myself a reality slap. The procedure I'm going to have tomorrow, the Radio Frequency Ablation, isn't going to cure me. I'm not going to be done with all this when it's over. I'm not going to be a "survivor."

I will be better off, at least I certainly hope so. But I won't be able to simply get up off that table and resume my old life where I left off. I usually try to keep those thoughts, those daydreams about the future under control. I push them back when they rear up. I try to be realistic.

A while back, I had written about labels — how we refer to ourselves. One woman wrote in to say that the term she uses is "coper." I'm not sure that's a real word, but I thought it was pretty good. We cope with stuff. We cope with things that we never thought we'd be able to. We cope with things that we wouldn't wish on our worst enemy. We get through it.

I think that's what my future is, and the future for all of us. We're going to cope with whatever hurdles this disease puts in front of us. We'll get through it. And if that future isn't what we had planned, if it's not what we daydreamed about, well, we can cope with that, too.

As I read back over this, it sounds like resignation. I don't mean it to. I don't look to the future with despair. I still am, in spite of everything that's happened, an optimist. I believe that whatever comes up, I can cope with it and live a good life while I'm at it. As Hunter S. Thompson used to say, "Buy the ticket, take the ride." This is all part of the adventure. And I can't wait to see how it turns out.

6:41 AM ET | 01-25-2007 | permalink

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Clicks, Booms and Raspberry Crystal Light

I'm pretty sure that none of you know who Maeve McGoran is, but you should. She has been my editor since I started at NPR, and she makes everything I write better. She asked me a question today that I thought was a good one. Actually, a series of questions: How do you compose yourself before a procedure? What do you think about during an MRI? I guess it all boils down to one question: What's going on inside your head when all this stuff is going on?

So let me try to answer them one at a time. How do you compose yourself before a procedure? I don't really have a ritual or anything. On the drive up to the hospital, sometimes I'll get pretty quiet, just thinking about what's going to happen, and what a long, strange trip this has been. I don't get nervous, but I do get anxious to just get in and get started. Hospitals move at their own pace, and one of the first things you have to learn as a patient is patience.

Some of the hospital staff are more talkative than others. A lot of times, there's a fair amount of joking around before a procedure. I'm sure my jokes aren't all that funny, but the staffers are polite and laugh anyway.

Now, a CT scan is easy. The worst part is drinking the contrast dye — two big cups of it. At Johns Hopkins, they mix it with Raspberry Crystal Light. It's truly vile. I have joked, asked, begged and pleaded for a different flavor — anything different — but so far to no avail. The procedure itself goes too quickly to think about. They run you through the machine, inject another dye, run you through again and you're done.

An MRI lasts much longer than a CT scan, and it's loud. Really, really loud. The magnets in the machine make a strange series of clicks and booms. If it's a brain MRI, you just have to lie there and listen. If it's a chest or abdomen MRI, they'll give you headphones to cut down on the noise. A lot of times I'll doze off, almost falling asleep, even with the noise. Other times, I'll listen to the rhythm of the noises and try to find the pattern. I used to play the drums — old habits die hard. And it helps keep your mind occupied. Seven bangs followed by a long boom, and so on.

Getting radiation was pretty easy to get through, too. The biggest problem was that the room was cold, apparently to keep the machine cooled down. That only took a few minutes. I would try to count the number of seconds that the radiation was on. Funny, in ten treatments, I don't think I ever got the same number twice.

As for the procedure I'm having Friday, I think I'm more excited than nervous. They will have me on anesthetic. The doctor said I may wake up a little, but I still shouldn't feel anything. I'll never forget the first surgery I ever had, a very minor procedure many, many years ago. I woke up on the table. The doctor asked if I felt any pain. I said, "No," so he said, "Don't worry about it, we're almost done."

All in all, these procedures have become pretty easy to get through. I'd love to hear if any of you have tricks that help you. Now if I could only find a better way to kill the time while waiting for results. That's the tough one.

5:55 AM ET | 01-24-2007 | permalink

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I Can't Wait for Friday

It's funny how all this can change your perspective. Having poison pumped into your veins? That's just another day in the chemo room. Having your body bombarded by radiation in a sealed room protected by lead doors? Just another treatment, one of a series of 10, 20, 30, or more. CT scans... that means you have to drink that vile mixture containing the contrast dye. MRI? Loud noises for a while, no big deal.

And now I find myself getting ready to have needles stuck into my lungs to burn out the tumors and some of the surrounding tissue. I'm actually looking forward to that. I had something similar when I was first diagnosed at a different hospital. They wanted to get a piece of one of the lung tumors, so I agreed to a needle biopsy. They give you a local anesthetic on your chest, then stick in a needle and try to stab one of the tumors. Problem is, they can't see what they're doing, so they run you in and out of the CT scanner to see. And you're awake while all this is going on. Lying there watching — and feeling — the technician digging around in your lung with a really long needle was not one of my happiest moments.

To top it off, they never did get a piece of the tumor, and my lung collapsed. Not a big deal, easily fixed, but even so. I was a rookie back then — I think that was only my second or third day in the hospital. Since then I've had brain surgery, brain radiation, chemo, spine radiation, tattoos on my chest to guide the radiation and now radio frequency ablation this coming Friday. And I can't wait.

I don't know that you really get used to having all these things done to your body. Some are painful, others are a piece of cake. I think you just get used to the whole process, that whole world. You show up periodically when and where they tell you, people do things to you, and then you go on to the next one. It's all part of our lives. Or should I say our new lives.

We don't become passive or uninvolved. Quite the contrary. Because each time, with each new procedure (or an old procedure for the hundredth time), we all carry the same thing into those rooms. A little bit of hope that this time, it may work. It may help. The results may be negative. The scans may be clean. And that hope allows you to put up with all sorts of pain and discomfort. Like I said, I can't wait for Friday. Let's get those needles ready and do this.

6:25 AM ET | 01-23-2007 | permalink

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It's Hard to Know How to React to Good News

I took the Christmas tree down last week, and put it out on the street for the garbage men to pick up. It looked a little forlorn out there, no more ornaments or lights, just lying by the street. When I was little, we used to get our tree on Christmas Eve and then keep it up as long as we could. Our record was March 1. Why it didn't combust when someone just looked at it is still a mystery.

I didn't just feel bad because I thought the tree had come down much too early. I looked at it out there and thought that more likely than not, that was my last tree. It's hard not to sound melodramatic sometimes, but the way my cancer had been going, the spread to the spine, the growth of the tumors in my lungs, my doctors and I were all pretty much reaching the same conclusion: It was unlikely that I would survive the year. And I was pretty much at peace with that — as much as you can be.

Then a funny thing happened last week. Hope, which had been absent for far too long, reared its head again. I had just finished radiation on my spine, which my doctors thought would kill those tumors, or at least hold them in place. But there were still the tumors in my lungs, and some of them were growing.

Doctors don't know how cancer spreads. Did these tumors come from my very first tumor five years ago? Or do these tumors in my lungs send their poison off to other parts of my body now? So there is something of a debate in the world of oncology. Do you go after the existing tumors? Or as many oncologists say, do you worry about the cancer you can't see? Do you have to attack it systematically with chemo, as opposed to killing a tumor here or there? It's a little like trying to fight a brushfire. Do you spray retardant around the fire, or go in and stamp out every little hotspot?

We'd been leaning towards the hotspot approach, what the doctors call "spot-welding." I figured it couldn't hurt to kill the existing tumors, if that was possible, and then worry about whatever happened next when the time came. So last week we met with a doctor who does a relatively new procedure called Radio Frequency Ablation. Basically he sticks a needle through the lung into the tumor itself, and burns it out. And he is totally confident that he can kill the three active tumors in my lungs.

That means, assuming no new tumors rear their ugly little heads in the next couple of weeks, it's possible that in the near future, I will have no active tumors in my body. That's something I never thought I would say. To be sure, this is not a cure. I will be fighting cancer the rest of my life. I'll still have to undergo more chemo, and I'm sure that at some point, there will be new tumors. But this is the first time it has seemed possible to push back, to have the upper hand, even if it's just for a short time.

It's a little hard to get my head around this. I don't want to blow this out of proportion, but I am so used to leaving the hospital with bad news, that it's hard to know how to react to good news. Hope is funny that way. For now, I'll just enjoy the idea that those tumors have no idea what's coming their way. I hope it hurts them.

6:21 AM ET | 01-22-2007 | permalink

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Turned the Corner? Not Yet.

I was standing in the corridor at Johns Hopkins today, and a man was pushing his small son in a wheelchair toward me. The son looked to be about 6 or 7. He was holding on tight to what I could only assume was his favorite teddy bear. It was beaten to a pulp in the way that only happens to a kid's most favorite friend. The boy was starting to lose his hair. Clearly he wasn't riding in the wheelchair just for fun. I smiled at him, and behind the bear that he was holding in front of his face, he gave me the greatest smile back. He made my day.

I wanted to write today about the news that made all the headlines over the past couple of days. It was front page in the papers and led the evening newscasts. As I'm sure all of you know by now, cancer deaths decreased for the second year in a row. The numbers themselves are pretty tiny, only about 3,000 fewer deaths. That's obviously good news, but when you think that there are roughly half a million cancer deaths a year, you realize how far we have to go.

The coverage itself was interesting. You heard phrases like, "We've turned the corner on cancer," and so forth. One thing struck me about the TV coverage: I never once saw a patient. You heard from experts, the numbers flashed on the screen, but the people who are sick, the people with cancer, were nowhere to be seen.

The decline in deaths is partly due to better screening, fewer people smoking and so on. It does not mean that more people are being cured. When that happens, that's when I would say, "We've turned the corner." We've talked before about screening, how important colonoscopies are and so on. And we are clearly making progress on that front. But what I want to see is something that will help the people who have been attacked by the monster.

I want to know when that little boy with the bear will have a better chance to live.

6:40 AM ET | 01-19-2007 | permalink

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True Courage

As I read the notes you send in, all your stories are different. But there is one common thread. This is just a tough, tough situation for everyone. It's hard, it's heartbreaking and it's draining. It takes everything we have just to keep going, to get up in the morning and face another day. This is true for those who have cancer, for those whose loved ones have cancer, for everyone who is touched in any way by this disease.

When we were talking about strength the other day, I said that strength is different from courage. But it takes both. A woman named Teena wrote in with a wonderful quote, which she attributed to a Marine in Vietnam.

"Courage is endurance for one moment more."

I think we all have different ideas of courage. There's courage on the battlefield, courage to speak out, to stand up for what you believe. All of those are very real. But I'm talking about a different type of courage that I think we all have and show every day. Sometimes just taking the next step on a long journey, putting one foot in front of the other, is an act of true courage.

Like that Marine said, sometimes it takes all the courage we have just to get through this moment and face another test in the next moment. It's not the kind of courage that is recognized. There are no medals, no parades, and rarely do those around us stop to think about it. But just getting through the day, or helping someone else get over the hurdles they face, is true courage. None of us know what the next moment will bring. It could bring defeat. But life is about the struggle, and just showing up for that next challenge is a sign, at least to me, of a life well lived.

As I said at the top, some days this is all just too hard. Your brain is screaming, "Quit!" Your body is begging you to lie down and let it all be over. Hopelessness can sap all the strength from your muscles. But somehow, some way, we all find the courage to take that next step and the courage to endure for one moment more.

6:03 AM ET | 01-18-2007 | permalink

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The Burdens We Can Bear

The issue of strength came up a number of times today. Several of you wrote in about it. I was talking with a friend of mine who said something very nice about how strong I am. But I really don't think I'm any stronger than anyone else in this fight. I don't mean just physical strength. I am bigger than most people, but that's not what we're talking about.

We're talking about the strength to go on, the strength to get ourselves and our loved ones through this ordeal. The strength just to get through another day. I think most people have that strength within them; they just don't always get to show it.

The people who are still trying to rebuild their lives after Katrina, they're strong. You never really know how strong you are until you're challenged. Some people never are. Some people are challenged their whole lives. But I do believe that all of us can get through far more than we ever think possible.

Because, really, you don't have a choice. You do what you have to do to get through a situation. There are inner reserves of strength within all of us. I'm not talking about heroism. That's a whole different issue. No, what I'm talking about is the quiet strength that gets you through a tough day on chemo or makes your legs steady enough to carry you out of the doctor's office when he's just given you bad news.

One of my favorite sayings, one that I think about a lot, is, "We are not given the burdens we deserve, we are given the burdens we can bear." And it turns out that we can all bear a lot, a lot more than we ever believed possible.

6:27 AM ET | 01-17-2007 | permalink

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Maybe We're Stronger Than We Think

It's happened to all of us at some point. Maybe at work or while playing sports or even at home. And certainly to anyone with cancer. That little voice pipes up and says, "Enough. It's just too much, too hard, too exhausting. Just give up."

Can you catch the person with the ball late in the game when your body is screaming from fatigue? Can you finish the marathon when every step is agony? Can you keep pushing for what you know is right in the face of opposition from your boss? Can you fight for others in what seems to be a losing battle?

And can you stand alone, holding that bottle of pills, knowing that as soon as you take them your body will revolt? Can you keep your feet steady as you walk down the hospital corridor towards the chemo room, knowing what lies behind those doors? Can you fight for one more day?

I'm not talking about courage here. That's another issue. I'm talking about strength — physical strength, mental strength, moral strength. We all have limits, whether we like to believe that or not. And fatigue plays a part, too. How long can your body go before you spend every bit of every reserve? Maybe the mental limits are the toughest. How do you tell yourself to keep going, keep fighting, when all the evidence says it's a losing battle?

We've all heard the argument that sometimes it's better to give up in order to fight another day. That was clearly written by someone who wanted to explain why he quit. I keep thinking of that scene in Monty Python and the Holy Grail: The knights all yelling, "Run away, run away." They were, of course, fleeing a bloodthirsty... rabbit.

I don't think that's really an option for those of us with cancer. If you give up today, you may not be around "another day." You have to win the fight, no matter how difficult it is today, then get up tomorrow and do it all over again. And each day gets harder. The exhaustion sets in. Your body is beat, and so is your spirit. How far down inside do you have to reach to find the strength to go on?

I've said all this just to get to one point. For cancer patients, giving up really isn't an option. I'm not talking about stopping treatment. That's a decision we will all face. It's certainly not giving up. But I have to say, after a year of living in cancer world, I have never met a patient, or a doctor, or a family member, who has given up. Not one. Maybe we're all stronger than we think. Maybe we're all just stubborn. But I think it's fair to say that none of us are going to go quietly.

5:49 AM ET | 01-16-2007 | permalink

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None of Us Can Judge

I read every note that all of you send in to the My Cancer blog. I take great strength from them and from all of you. But every once in a while, there is a note that just stops me cold. And not always in a good way. A woman named Pam wrote in yesterday to say this:

"Every morning, while drinking my first cup of the day, I sit at the computer and read what NPR has to offer. I start with the daily headlines, the growing numbers of innocent victims of genocide, war, hunger, disease, poverty. And then I move on to this blog. I am not and have never been the 'victim' of cancer and for that I am grateful. I'm certain this will be interpreted by all as heartless, but amid all the death, destruction and sadness that comes with being born at the wrong time in the wrong place, I question the morality of expending unknown amounts of resources extending the life of one adult 'victim' who, it appears, has lived a privileged life up to this point. Am I alone when I ask this question?"

I assume the "victim" who lived the privileged life is me. Did this note make me angry? Yes. Sad? That, too. But there is a lot to think about here. And a lot to respond to.

First off, I feel privileged, but maybe not in the way that Pam thinks. I have always talked about what I call "the luck of the draw." I had the great good luck to be born in this country. Had I been born in Kosovo or Rwanda or Somalia, my life would have been very, very different. The world is unfair. Not every child born has the same opportunities, the same chances. Life is unfair. And I know it. I've seen it. Not in pictures in the paper, sitting around my kitchen table or on the news. I have seen it up close. I have seen far too many people, literally tens of thousands of them, die before my eyes. I know for a fact there have been times when I have been the very last thing that people saw on this earth. So I think I do know what it means to be born in the "wrong place at the wrong time."

But let's get to the real question here: the morality of expending unknown amounts of resources to save, well, to save me. My care is expensive. I know that. The drugs cost tens of thousands of dollars over time. Same with surgery and radiation. But is that really how Pam wants to value life? Is my life — or the lives of the millions of people out there with cancer — only worth so much? How much in the way of resources should be expended? And who decides?

I remember back in Rwanda in 1994. There was a refugee camp — well, actually it was a death camp — just over the border in what was then Zaire. There were something like 100,000 people there. Most were already dead; the others dying. In the middle was a small tent run by Doctors Without Borders. They were trying to treat the dying, or to at least ease their pain. I asked one of the doctors how she did it. She said you just pick one person, do what you can for them, and then move on to the next. That's the only way you can stay sane. You can't look at all 100,000. Somehow, I don't think she was worried about expending her resources on just one person at a time.

I guess that's my biggest problem with Pam's note. She doesn't know me, except for maybe the little I have said about my life in the blog or my bio on the site. How can anyone else judge what our lives are worth? Because I've said I have had a full life, does that mean, in Pam's view, it's OK for me to die? Should those resources be spent on someone who had a different kind of life? One she would see as less "privileged"? Again, who decides? Should it be based on income? Education? What?

None of us is in a position to judge another's life. And cancer isn't a judge, either. It doesn't pick some people out on moral, economic or any other basis. Some of us get it, others don't. Cancer, as I have said before, is not a value judgment.

If I sound a little angry, I guess it's because I am. All of us — all of you out there — deserve to live. There are great inequities in this world; not everyone has access to the same resources. But that doesn't mean that anyone else gets to decide who deserves it and who doesn't. In the end, life is about loving people, especially in their times of need, and hoping that when you may end up in the same situation, someone will be there to love you.

Pam wonders if her question will be considered "heartless." That's a judgment I'll leave to others. But ignorant? You bet.

6:50 AM ET | 01-12-2007 | permalink

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A Changed Perspective

It's funny how time — and experience — can change your perspective. I had new scans today, the first in a while. I've been off chemo for more than a month, so I was pretty nervous about what the scans were going to show. I was expecting new tumors to have popped up somewhere. So waiting for my doctor to give me the results was pretty nerve-wracking. I did a lot of pacing.

And the news wasn't too bad. No new tumors. That, I think, surprised us all, because I had new tumors show up while I was still on the chemo. Two of the tumors in my lungs did grow, but not all that much. A year ago, when I was still a cancer rookie, these results probably would have freaked me out. Now I've been through this so many times, and gotten much worse news, so I actually feel pretty good about this. No new tumors outweighs the growth of the existing ones. Like I said, it's funny how your perspective can change.

Now it gets more complicated. What to do next? My doctors want to put me on a new and different set of drugs. The side effects of this treatment are worse than what I have already gone through: diarrhea, nausea, an acne-like rash and I'd probably lose my hair. I'm more worried about the effect on my body than I am about my vanity. But these drugs are effective in about 40 percent of cases. And "effective" does not mean cure. It means keeping the patient alive for another four or five months. At least that's what the averages show. Is that worth it?

What if I just took my chances and did nothing? Would the percentages be all that different? Or if I only did one drug, or tried a combination of drugs and radiation or... or... or something else? The problem is that no one — not the doctors, not the patients — knows if these drugs will work at all until you try them. It's a crapshoot. Like I've said in the past, I like to gamble, but I like the odds to be a little better than these.

So it's most likely that I will try the new chemo drugs, but I'm not sure. I need to think about it more. It's not that I don't have enough information. I do. It's just that I'm running head-on into that one big question: Quality of life vs. quantity of life? All the experience I've had so far doesn't really help on that one.

6:24 AM ET | 01-11-2007 | permalink

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Time to Go Back to Work

My vacation is just about done. That's what radiation has been like for me — a vacation from the chemo. I know that for some people, radiation is tough: the redness, the irritation, the pain. But I had it easy. Just 10 treatments. So now it's back to reality, or at least my reality.

I have one last radiation treatment. At that point, the doctors are pretty certain that they will have killed the two tumors in my spine. It's funny how it can be so easy to kill those tumors with no side effects and none of the nausea that comes with chemo, but the tumors in my lungs cannot be treated the same way.

So then it will be back to my old life. The first thing is to get a new CT scan. I've been off the chemo for a while now. And that's been great. I've felt more like my old self than I have any other time in the last year. But that vacation may have come with a price. What have the lung tumors been doing since they haven't been fighting with the drugs? Have they grown? Are there new tumors? I think it's pretty likely that the news from the new scans will somehow be bad.

And then it's decision time. What do we do next? The choice is pretty basic. Either a new set of chemo drugs, or do nothing. I'm not ready to stop treatment yet, so I guess it will be the new chemo. That's not something I'm looking forward to, but it does hold out the possibility that this time it will work. Of course, it's also very possible that it won't work at all. We won't know until I try it.

I've made some new friends while I've been getting radiation: some of the patients, the nurses and doctors. I probably won't see them again. The chemo ward is two floors and a world away. I wish them all the best. And it will be good to see my old friends in the chemo room. But unfortunately, I can't just make a social visit. It's time to go back to work.

6:19 AM ET | 01-10-2007 | permalink

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Words and Labels

Words are important. They have power. Labels define people. So what do we call ourselves? What are we?

Five years ago, when I first had cancer and thought that it was gone forever, I never liked to use the term "survivor." I had survived, so it was technically correct, but I felt that that was not how I wanted to define myself. Cancer was not my identity. I was more than that. I felt, at the time, that cancer was just a disease, and I had gotten through it, so it was time to go back to the rest of my life. I wasn't going to let cancer be what defined me.

So now what do I call myself? I don't think "survivor" is right. I have survived so far, obviously, but when I think "survivor," I think of someone who has been through it and has gotten past it once and for all. I have the disease now. Most likely, I will have the disease in my body for the rest of my life. So I'm not a survivor.

How about "victim"? That's probably closer to the mark. We didn't do anything to get this disease. It just happened to us. Our bodies are besieged by cancer. It takes from us like a thief. It robs us of so many things. But when I say "victim," that doesn't mean that we are weak or passive, that we just sit by and let this happen to us. Everyone I have met who has cancer is a fighter. In their own way, they are not giving in to this disease. "Victim" doesn't mean helpless.

Is "cancer patient" a better choice? It's certainly accurate, in a bland sort of way. It really doesn't get across what it's like to have cancer, what we all go through. It makes it sound too easy, too clean.

Does it really matter what term we use? I guess how we choose to define ourselves does say a lot about how we face this disease. But in the end, I think that we are all just people, who happen to have gotten a disease. What more do you need to say?

6:55 AM ET | 01- 9-2007 | permalink

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How Would the Year Have Been Different?

I'm a year into my struggle with cancer. I've been asked hundreds, if not thousands, of questions about it by friends, loved ones — even strangers. I try to answer them all, but sometimes there are no answers. Sometimes we're making this up as we go along, just like everyone else.

Last week a friend of mine asked a question that stopped me cold. I had never really thought about it before. She asked if I could go back to January of last year, knowing what I know now, how would the year have been different?

I still don't have a great answer for that one. In some ways, it was easier not knowing what would happen. If I'd known what chemo was going to be like — the nausea that wracks your body morning and evening, the fatigue that can't be conquered no matter how long you sleep, the pain that lasts for hours from an injection — if I'd know about all that, would I have still gone through it?

Would I have gone through it knowing that at the end of the year, we were going to discover it wasn't working? If I'd known how many times my doctor would say, "Let's find a place to talk"? That means bad news. Good news can be delivered anywhere. Would I have gone ahead anyway?

I think the answer is yes. The chemo, unpleasant as it it was, got me through the year. And let's face it, there weren't too many alternatives, as far as I was concerned. I don't think I would have made the medical decisions any differently.

The flip answer to the question might be that knowing what I know now, I might have drunk more, eaten more of my favorite foods, said to hell with a healthy diet and just gone for everything on the dessert tray. But I don't think that would have worked either. As much fun as it sounds, I think I would have ended up where I am, only much fatter. I don't think that was the lesson I was supposed to learn this past year.

There would be one good thing about starting the year over. I'd know how it ends. Last January it wasn't certain, even likely, that I would still be here today. Eliminating that fear would have been a blessing. The knowledge might have stemmed some of the sadness, some of the tears, not just for me, but for those who care about me too.

Would I have lived this past year any differently if I had it to do over again? The heart of that question, I think, is not medical or physical. It's a question about who I am, and how I chose to live the year. Sitting here now, I think I can say that with a few minor exceptions, I probably would do pretty much the same things all over again. I think I had about as good a year as I could have hoped for, given the circumstances. I would still try to get as much out of each day as I possibly could. And that includes those days when I was so sick I could barely accomplish anything. The key was, and is, to try.

But would I want to relive this past year? No. Not for anything. I'd rather face the uncertainty of the year ahead.

7:12 AM ET | 01- 8-2007 | permalink

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They Need to Know

A woman named Dawn wrote in yesterday. She talked about her grandmother, who she said had taught her just about everything, except about cancer. When her grandmother got sick, Dawn said that she was left confused and hurt. And finally, she wrote the line that grabbed me:

"It has been 20 years and I still need to understand."

I think those of us with cancer are trying to understand ourselves. How did this happen, what does it mean, what will happen? There really are very few answers for those questions. And there is so much medical information to try to understand, as well: new terms, new concerns, a flood of new information. And always that nagging feeling that somewhere, buried in all that information, might be the answers we need.

And of course, that big question, "Why me?" We've talked a lot about that on this blog, and most of us agree it's not a question that's really worth asking. And of course, it, too, has no answer.

What I think we miss sometimes is how important it is for the people in our lives to understand what is happening to us. We know. We know the symptoms, the feelings. We live with all that every second of every day. But we don't always talk about it. Sometimes I think it's easy to forget that not everyone is going through this. Our lives become so routine, so mundane — even the bad parts — that we don't think to tell someone else. We don't think that maybe they want to know. That they need to know.

What exactly do people want to know? What it feels like? How it totally upends our lives and takes over so much? How we lose control of our lives? One friend asked me today about whether I felt pain. He was concerned about that.

Cancer is such a foreign experience, so unlike anything that most of us have ever been through. It must be even more mysterious to those on the other side of the line, those who haven't crossed over into cancer world.

I think you all know how I feel about this. I think that you have to talk about it, no matter how unpleasant that may be for the speaker or the listener. We owe it to our loved ones to honor their need to know, to try to understand what has happened to us. So talk about it. Answer their questions. And hope, with all of your might, that they will never ever get to know cancer firsthand.

6:29 AM ET | 01- 5-2007 | permalink

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Crossing the Line

We're taught early on not to step over the line. You can't cross police tape or a barricade. Don't drive over the double yellow line. Stay behind the yellow line at the bank or at immigration or on a bus. And for the most part, we obey.

Except in the world of cancer. The rooms where they do the radiation treatments have huge doors, more than a foot thick. I assume they are lined with lead. There are bright stickers on them, saying "Caution, high radiation." The clear message: Stay out. And the radiologists are very careful. Those doors are closed each time before the machine is turned on. And they leave the room before anything happens. But we don't. We stay on the other side. I lie on the table in that room and hear the machine come on, bathing certain parts of my body with radiation. The first shot always makes the hairs on my chest and arms stand up, so you know something is happening. My part of all this lies on the other side of that huge door, on the other side of those warning stickers, in a room where it isn't safe for anyone else to be.

The same is true of the chemo room. Those chemicals are dangerous. If they spill, or worse yet, spill on someone, it's taken very seriously. The clear liquid in those bags is dangerous. Unless, of course, you're there to have it pumped into your body. All the warnings on the bags, those are for other people.

I'm now so used to being alone in a treatment room. Getting an MRI? You hear the technician over a mike; they're in another room. Same with a CT scan. Somewhere along the line, we crossed the line. We live on the other side, where it's not safe for other people. We have to go to places and go through things that others are cautioned to avoid. We live on the other side.

I don't pay attention to those warnings anymore. I know they're not meant for me. Those of us with cancer go through things that others avoid. And that's as good a definition of what it's like to have cancer as I can come up with.

5:51 AM ET | 01- 4-2007 | permalink

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'There's a Child in There'

I was sitting in the radiation waiting room yesterday morning. It was crowded. The computers had crashed earlier and everything was running way behind schedule. Everyone else there seemed to know one another; they had been getting the treatments for a while. I was the new guy, but was immediately welcomed into that instant community of cancer patients. Everyone there was older. At 51, I was one of the younger patients.

And then one of the men said, "There's a child in there." The big, lead door had opened and he could see into the treatment room. Immediately, everything changed. The room got sort of quiet; people even lowered their voices. This was something terrible.

Everyone in that room was fighting his own battle. One man had said that the treatment seemed to be working for him — his tumors were shrinking. Another woman didn't know yet — she still had about 20 sessions to go. But all of that was quickly forgotten. "There's a child in there."

Sure enough, the door opened, and a bed was wheeled out. Lying there, apparently knocked out by anesthesia, was a young boy, probably about 7 or 8, certainly no older than 10. He was bald, probably from chemo. He was clearly very sick.

We all watched in silence as he was wheeled away. I can't imagine the agony his parents must feel. I can't imagine the agony he must feel. And then the man next to me said, "It's not right. We've all had long lives. That's not right."

You have to wonder what the future holds for that little boy. Will he survive long enough to learn to drive? Feel his first crush? Have his first kiss? Will he get to grow up? I don't know. I probably never will. But that man was dead-on. It's not right.

6:08 AM ET | 01- 3-2007 | permalink

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A Mostly Blank Slate

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

I know it's a cliche, but this is the time of year to talk about how fast 2006 came and went. The year just flew by. Things seem to go faster the older you get. I remember as a kid, if you had a whole afternoon to play, you could do a million different things. These days, with that same afternoon, I feel lucky to accomplish one thing. Where does all the time go?

A lot of it just gets wasted. Sitting in traffic, the minutes tick by. Waiting in line at the bank or the grocery story eats up our time. And of course, there's hospital time, which is different from time outside the doors of hospital buildings. Have an appointment at 10:00? You'll be lucky to be in by noon. You have to get used to it. There's nothing to be done; everyone there is working as fast as they can.

Obviously, as someone with cancer, I look at time a little differently now. It's more of a finite quantity. There's a limit to the time I have left — a limit set by the tumors in my body. People look at cancer two different ways: Some think it's a good way to go, because you have time to prepare, time to do the things you need to do. I've never really liked that argument. First of all, I don't spend all my time getting ready to die. That's not the way it works. Quite the opposite.

Others think you feel the pressure of time and hear that ticking clock. Are there things you always wanted to do? Better do them quick before you run out of time. I don't really feel that way, either. I don't feel my life is incomplete. I don't feel there are a couple of things I have to do before I die. I'd just like to live a while longer. Not because I want to climb Everest, but because I like living. I'm not ready for that to end.

So here we are at the beginning of another year. Full of promise, full of the unknown. A blank slate, at least a mostly blank one. As I look forward into this new year, and look back on the past one, I have to say that, cancer or not, I'm pretty lucky. I have just about all the things I could ever want or need. I've been very fortunate. But there's one thing: It looks like I may just run out of time.

6:12 AM ET | 01- 2-2007 | permalink

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