The Importance of Honesty

Today I'm going to stand up for my doctor. A couple of days ago, I wrote about what he said while being interviewed in the chemo room. A number of you wrote in to say that you thought he was wrong to say anything like that. What he said was, "The cancer is going to kill him." Yes, it was shocking to hear that again, but it wasn't anything I hadn't heard before. I think my doctor was right to say that.

First of all, he had my permission to talk about my case, so he wasn't violating any patient/doctor confidentiality. That's not the major issue here. What he said the other day is what he told me almost a year ago when I was diagnosed. And he's right. Absent some amazing breakthrough or miracle, the cancer is most likely what is going to end my life. I think that's more likely than my being hit by a bus or something like that.

What I appreciate the most about him is his honesty. I guess he could have tried to sugarcoat the news — somehow lessen its impact. But that's not what I wanted then, and it's not what I want now. I want to know what is happening to me, and what my doctors and nurses think will happen to me in the future. I don't want them to use euphemisms or hide any part of the truth. I want it out there, straightforward, no messing around.

Hiding the truth or diluting it in any way doesn't help anyone. I know he's right, and I came to terms with that a while ago. That doesn't mean I'm giving up. I'm not. But one of the things I've learned from all this is just how important honesty is. I don't have time to play games. I have other things to worry about. I expect honesty from the people I love. I expect them to tell me when they're happy or sad or something in between. In return, I will be honest with them, even though that can be difficult sometimes.

And thinking about this, I realized something else, too. Even though my doctor said the cancer will kill me, he's not giving up, either. Neither are my nurses. And neither are any of the other patients who were in the chemo room that day. So am I glad he said what he did? I wish it wasn't true, but it is. He was right to say it. He wouldn't be my friend — or my doctor — if he had done anything else.

6:33 AM ET | 11-30-2006 | permalink

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A Sign That Something Has Gone Wrong

In this business, it's all about the "eyes." Or "hits." Or ratings, or viewers... and so on. The way we measure how we're doing in journalism is by counting the number of people who watch our work. There are a lot of people who look at the My Cancer blog. And that's good from a business standpoint. But when you stop and think about it, it's actually pretty sad.

When NPR started this blog, we were hoping that we'd get a number of responses, and we have. One of the things that surprised me, though, is that so many of you write in not to comment about anything I've said, but rather, and more importantly, to tell your own stories. That's something we hadn't expected. Every day, so many of you write in to talk about your own cases, or those of loved ones or family members. And I'm thrilled that we can be a place for you to do that.

But there's a truth hidden behind all those responses: Cancer affects so many of us. Too many. Is there anyone out there who hasn't been touched by this disease in some way? Who doesn't know someone who's fighting his or her own battle with cancer? What might be seen as success, as so many hits to the blog, so many responses sent in, is actually evidence of just how pervasive cancer has become. And that saddens me beyond words.

The same thing happens sometimes when I go up to Hopkins. On some days, you get there and the guards say the garage is full. And that's more than just an inconvenience. That means there are so many cancer patients in that day that there's no more room. What could be sadder?

I guess we could find some solace in the knowledge that we're not alone, that so many others are walking the same path. But that's little comfort; in fact, it's no comfort at all. I think this is all a sign that something has gone wrong. Far too many people are facing cancer. Somehow, some way, it has to be stopped. It just has to be.

6:23 AM ET | 11-29-2006 | permalink

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Words That Cut Through the Noise

It's funny how some words can just cut through the noise. Last Friday, I was up at Hopkins having my regular chemo treatment. Ted Koppel, producer Elissa Rubin and a camera crew were filming it for an upcoming documentary. The room was loud, as usual, and I sat there getting the infusion while Ted and Elissa were doing interviews.

Ted was talking to my oncologist. They were on the other side of the room. I could hear what they were saying if I really concentrated, but I was starting to feel the effects of the drugs. Then, clear as day, I heard my doctor say one phrase: "The cancer is going to kill him."

I felt like I'd been slapped. They were talking about me, of course. It wasn't that I hadn't heard that already. My oncologist is totally honest with me — that's one of the reasons we like him so much. I guess it shocked me a little because I hadn't thought about that in a while, had sort of pushed it to the back of my mind.

These days, I've been concentrating more on the chemo, on trying to get through it, on trying to decide what to do next. I know that my cancer is terminal. Even though the chemo seems to be doing some good, I know that it is most likely only temporary; it's just buying me more time. But the mind is a funny thing. When I was first diagnosed, I thought a lot about my death. When it would come, how, whether it would be painful. But over time, those questions sort of receded into the back of my mind. Oh, they're still there, of course, but I don't spend a lot of time thinking about them.

And that's why that one short sentence came as something of a shock. I'm not in denial about it at all. I have just been thinking about other things. But those words, when spoken aloud, can cut through just about anything.

I have a lot of other things to think about these days — the holidays, work, things like that. I'm not going to dwell on the idea of my own death. I guess I was just surprised by my own reaction, surprised that I was surprised to hear those words again. I know my doctor's right when he says that, but these days I just don't have time to dwell on that. There's too much else to do.

2:49 PM ET | 11-28-2006 | permalink

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The Things We Knew We Should Be Doing All Along

The following is a commentary from Morning Edition, Nov. 27, 2006:

I was up at the cancer center the other day, waiting for a friend. I just sat and watched all the people. You can tell the regulars right away. They walk with purpose. Off to the lab for blood work. Upstairs for chemo. They're the ones saying 'hi' to the nurses and doctors who've become their friends.

You can tell the people on their first visit just as easily. They have that lost look of new students on the first day of school — not sure where anything is or what they're supposed to do. The regulars have gotten past that deer-in-the-headlights look. Their faces show determination more than anything else.

I noticed one man in the lobby. He was wearing his bathrobe and he didn't seem concerned at all. I saw a young woman frantically looking for someone. I assumed they were father and daughter. When they found each other, they hugged. The young woman held on tightly. It was a very private moment... in a very public place.

Would they have done that before the man got cancer? Would they even have hugged, except on rare occasions?

I think one of the things cancer does is break down the walls of our pride. A doctor told me early on that cancer meant many people would want to talk about things I definitely didn't want to talk about. He was right. I have to talk about my body to strangers. I have to talk to my doctors about my greatest fears. I have to talk about my death. But it doesn't bother me anymore.

I don't worry as much about keeping up a facade, either. I have cried, more than I ever had before. I've been more open to friends and loved ones about how much they mean to me. Before I got sick, I would've been embarrassed to say some of those things out loud.

In the cancer wards, you see more physical displays of affection. A touch, a hand on the shoulder, some gesture meant to reassure or just let the other person know they're not alone. Cancer teaches that worrying what other people will think and being discreet is something we don't have time for.

What has happened, I think, is that we've all been humbled. Cancer has freed us to do the things we knew we should be doing all along.

I don't think I'll ever forget the image of that man in the bathrobe and that young woman holding on to each other so tightly in the midst of a crowd. For me, that's life as it should be lived.

6:32 AM ET | 11-27-2006 | permalink

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Best Wishes for a Happy Thanksgiving

I've started today's posting a couple of times, and then erased it all. It's easy to fall into cliches about the holidays. So in the end I decided to just keep today's post really simple. Even though these are difficult times for many of us, even though the days may seem more dark and foreboding than sunny, we do all have a lot to be thankful for. Those things will be different for each of us. I hope that we all find the time and the peace to think about them. But there is one in particular that we all share, and for which we should be extremely thankful. We're still here.

My best wishes for a happy Thanksgiving to all of you, and all of your loved ones. May you find peace when you most need it. I'll be back next Monday. Until then, enjoy that piece of pie and all that goes with it.

6:18 AM ET | 11-22-2006 | permalink

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A Break from Chemo, a Visit to 'Talk of the Nation'

Yesterday should have been my normal chemo day. I was up at the hospital, actually in the chemo room, but I didn't have to get the injection. I was there to talk about some shooting for an upcoming documentary and also for some blood tests. I'm on a mini-break from chemo — four extra days.

I'll go back on chemo this Friday, but my doctors gave me a break. They're letting me hold off on the next treatment until after Thanksgiving. That means I can enjoy the holiday without being sick. No pills to take that night. And that makes all the difference in the world.

It's amazing how the brain works. I've been off the chemo since last Monday, my normal week off, and I feel so much better. I can almost — almost — forget what it's like to be on the drugs. I know that four extra days isn't very long, but I'll take every day I can get.

It was sort of strange to be in the chemo rooms and just be a visitor. I didn't have that normal dread. I knew that I wasn't going to feel lousy in a couple of hours. It was sort of like visiting your office to pick something up, but then taking the rest of the day off. It's liberating. So I'm going to enjoy these four days as much as I can.

However, I still have to do some work. This afternoon, I'm going to be on Talk of the Nation, the NPR call-in show. I hope that many of you will listen, and I hope that some of you will call in.

I hope that some of you can take a break, too. It does wonders for your outlook. I'll save my Thanksgiving thoughts until tomorrow. I hope to talk to some of you on the radio later today.

6:12 AM ET | 11-21-2006 | permalink

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One Year After a Cancer Diagnosis

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

I'm coming up on the one-year anniversary of my second diagnosis with cancer. That, plus the Thanksgiving holiday this week got me thinking about how my life has changed. A year ago, I had no idea anything was wrong, although a couple of people said later they didn't think I'd been myself at Thanksgiving dinner. About two weeks later, I started slurring my words, and the rest of the story you know by now: Brain tumor. Brain surgery. Lung tumors. Spinal tumor. Chemo. Radiation. And so on.

But aside from the obvious, am I really that different? The other day at a party, a woman came up to me and said, "You're so brave." And I said what I always say: "Thank you, but I'm no braver than anyone else in this situation." People can handle all sorts of challenges and tests, far more than they realize. Almost everyone rises to the occasion. The people who survived Katrina and are trying to rebuild their lives are brave. The soldiers in Iraq are brave. The caregivers, the nurses and doctors who try to save us all — they're brave, too.

My body has changed in some ways that are obvious, and in others that aren't. I have a ridge in my skull where they cut it open to take out the brain tumor. You can feel the screws in the plates that hold my skull together. I'm heavier than I'd like to be. I put on weight when I was on steroids, and I haven't been able to work out much the last year. I hate the extra weight, though my doctors seem to think it's healthy.

Emotionally? Over the past year, I've hit the depths of sorrow, thrown in a little anger, too. Some hope, but probably not as much as I should have. Frustration. The whole gamut of human experience. And maybe that's one of the lessons here. In spite of the cancer, in spite of what we all go through, in the end, we're all just human. We're like everybody else. Except that we're not.

I try to make the most of my life these days. But I was really trying to do that before my diagnosis, too. My view of the future is a little cloudier; it's no longer open-ended. Not everything is possible anymore. I'm pretty much an optimist still, but that has been seriously tested, too.

I've learned a lot from all of you who've written in. Your eloquence and your humanity always teach me things, make me smile or make me nod in understanding. I've learned to see different things. The fear in the eyes of a loved one who wants so desperately to help. The different expressions on a doctor's face, depending on whether he has good news or bad.

And I've learned something that may be the most important lesson of all. I've learned that sometimes the best thing I can do for others, and for myself, is just to say something very simple: "It's going to be alright." No matter what happens, I know that's true.

5:56 PM ET | 11-20-2006 | permalink

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Touring the Chemo Room

Next week, I'm going to show a good friend of mine around the chemo area at Hopkins. She's a TV producer, and may want to do some filming there for an upcoming documentary. I'm a little curious about what she's going to think. In some ways, I'm looking forward to seeing it all through her eyes.

I remember the first time I went in. I was nervous and didn't know what the treatment itself was going to be like. When we walked through the waiting room and through those doors, I was stunned. I can't really think of any other way to describe my first reaction. I felt a little like the characters on the X-Files when they find the room where all the people are being experimented on. This was a whole room of people sitting quietly for the most part, all hooked up to machines that steadily pumped drugs into them. Gradually, I became aware of more activity. The nurses running from patient to patient, the machines beeping when a bag needed to be changed or a line was clogged.

And the patients. Some looked fine. Some were clearly in great pain and distress. Maybe one of the reasons this hit me hard at first was because I realized this was going to be my new world. I had crossed a line when I went through those doors. I now belonged in that world as much as I did in the world outside.

These days, I don't give it a second thought. I know some of the nurses personally. I'm always glad to see my nurse; we've become friends. Most of the others I at least know by sight. I know the nurses who insert the needles into my veins — they're always laughing and joking. I know some of the patients, again, at least by sight. Some are clearly getting better. Some, unfortunately, are not. I see the same family members again and again, all wearing that expression of pain and worry, trying their best to take care of their loved ones when there's really very little they can do. But they're there, and that counts.

It's funny what you can get used to. What becomes normal after a while. That's my world now, I belong there. But I wonder how my friend will see it. I wonder what she'll see that I no longer notice, or what she won't see that I do. When she walks through those doors, she'll be a stranger in a strange land. Me? I'll feel at home.

6:23 AM ET | 11-17-2006 | permalink

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The Holidays Have Begun

I've postponed my next chemo until after Thanksgiving, so I expect my body and my appetite to be ready for dinner. Lisa F. Young

Well, the holidays have clearly begun. Personally, I think it should be a crime to put up Christmas decorations or play Christmas carols until the day after Thanksgiving, but clearly all the retailers feel differently. There was Christmas stuff up before Halloween. That should be a felony.

The holidays are always a time for reflection. Last year at Thanksgiving, I didn't know that there were tumors growing in my body. I was going about my life in blissful ignorance. This year is different in so many ways, some obvious, some not. In many ways, I have a lot more to be thankful for: old friends who have stood by me in the bleakest times and new friends who already feel like old friends. I have learned many lessons and been reminded of things that I knew, but had maybe forgotten. And I have all of you, the family that has grown up around this site.

Of course, there is one sad thought floating over the holidays. I think it's probably in the mind of every cancer patient. Will I be alive for the next Thanksgiving or Christmas or New Year's? Who knows? The sad truth is that some of us probably won't be here next year. That's just the way it goes. But that shouldn't take away from this season.

As I've said before, I've postponed my next chemo until after Thanksgiving, so I expect my body and my appetite to be ready for dinner. That night, am I going to be worried about whether it will be my last Thanksgiving? Nope. And I think I will have that second piece of pie — and yes, I will have whipped cream on it, too.

6:39 AM ET | 11-16-2006 | permalink

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Don't Waste Energy Worrying About the Past

We talked the other day about blame. It's frustrating sometimes that there really is no person to blame for getting cancer. That might make things much easier and give us a target to focus all that anger. But then I got this note from Terri:

"You left out one big person we can often times hold to blame — ourselves. How many of us with cancer have second-guessed our own actions of the past, our diet or abuses of youth and perceived immortality. Although I, too, have expressed anger in unhealthy ways to the people closest to me, depression and self-loathing over my past, haunts me more often."

I totally disagree. The last person that Terri, or anyone else with cancer, should blame is themselves. First off, we don't really know what causes cancer. Some people think it's what we eat, or what's in the air, or in our water, or in our genes. It's probably a combination of all of that, along with a mixture of things we don't know about. We know there are risk factors that can increase the chances of getting cancer, but not everyone exposed to those risks gets the disease. For instance, some smokers get lung cancer, of course, but some lifelong smokers don't.

And in the end, I don't think it matters. I'm not convinced that my cancer is the result of any choices I made. What does matter is that I have it. Whether I could have avoided it, whether I did something to cause it, or even whether I did anything to postpone it — all of those issues are moot. The only thing that matters now is how I deal with it.

So to Terri and everyone else who feels this way — and I think we have all thought about it — all I would say is don't beat yourself up. You didn't bring this on yourself. Don't waste any precious energy on worrying about the past. There's nothing that can be done about that anyway. I don't think that cancer is some sort of cosmic payback. It's not punishment. It just is. Cancer happens. The test for us is how we deal with it. Of all the things we have to worry about these days, how and why we got it should be at the bottom of the list.

6:52 AM ET | 11-15-2006 | permalink

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It's Amazing What a Little Good News Can Do

It looks like my second prognosis is going to be wrong. My first prognosis had me dying about six months ago. But some of my doctors gave me a little more time, saying that, according to the averages, I would probably die about now. That clearly does not seem likely, unless I am hit by a bus or something — and I don't think that counts.

So almost a year into this journey, a lot of my thinking has changed. We have talked a lot about quality versus quantity. How much is an extra day of life worth? What are you willing to go through to have that time? And what if, on that day, you're pretty sick? This, of course, is not an academic exercise for cancer patients. We face that issue every day.

Before I was diagnosed, I, like most people, thought people would do anything to live as long as possible. Now, having been on chemo for almost a year, I can understand why some people may just say, "Enough!" I think about that a lot now as I contemplate a short break and then starting another round of chemo. Most likely six cycles. Eighteen weeks. It's not something I'm looking forward to.

I'm also not thinking about quitting at all. Even on the worst days, when the nausea is wracking my body, I'm still determined to go on. I've lost something in this last year, too: my fatalism. I had pretty much come to terms with the idea that I would die sooner rather than later. I know that it upset my friends and loved ones, but I told them I was at peace with this process. I have had a great life, many wonderful experiences. I don't feel the need to go climb Mt. Everest.

But now I think about the idea of getting through this. And that's sort of new. I may also be kidding myself, but it's amazing what a little good news can do. I am honest enough with myself to know that I will probably never be cancer-free. The idea that I could be, though, just for a short while, and that I could get some semblance of my old life back, well, that gives me hope.

The good person dressed in white is sitting on one shoulder, saying positive things in my ear. But the bad person dressed in red is sitting on the other shoulder, asking if I really want another couple of years of feeling sick every day. I don't have the answer yet, mostly because I don't have to make that decision yet. In the meantime, the positive things the little guy in white is saying are drowning out what the other guy is trying to say.

6:11 AM ET | 11-14-2006 | permalink

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Giving Your Body a Break

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

It's nature's way of telling you. I'm old enough to remember the old Spirit song (I guess I'm dating myself). But the message is pretty clear. It's time for a break. I'm just finishing my 11th chemo cycle, getting ready for the 12th. My doctors said no one does 12 cycles and keeps on going. When I heard that, my first reaction was, "Well, I'm going to be the one to break that rule." I was being foolish.

I was going to cheat a little anyway. I was going to put off my next chemo cycle for four days so I'd be off the drugs for Thanksgiving. I really don't want to be totally sick that day. My latest blood work indicates I may need a couple of extra days anyway before I can start the next cycle. Now I can take those days and not feel guilty.

As all of you who've done chemo know, your body's capacity to take those poisons isn't unlimited. You have to give yourself time to recover. So why would I be reluctant to take a break? Because the last time I did, things didn't go so well.

After the first six cycles, I took two weeks off and then started a lesser treatment program — just one drug. The next scans did not bring good news. In those few weeks, freed from the assault of the complete chemo package, my tumors grew. A new one sprouted on my spine. My greatest fear about taking a break was realized. It was clear evidence of how aggressive and fast-moving this disease can be. So it was back on the drugs, with a couple of new ones thrown into the mix.

And that seems to have worked. My tumors have shrunk. There's some evidence the lesion on my spine is healing, a sign the tumor may be dying. With things going my way, I'm a little reluctant to take a break. Why let the tumors catch their breath? If they're down, I want to kick them. Hard.

There's a psychological component, too. While my body desperately needs a break from the chemical onslaught, I don't want to be worrying the whole time. Will it be one step forward, two steps back? If the tumors do start to grow again, we wouldn't know for a couple of weeks. That's long enough for bad things to happen.

How do you decide? I guess your body decides for you. I feel like I've had the flu for ten months. I really don't remember what it feels like not to be sick. Getting back my old body and my old health is really attractive — even if it's just for a couple of weeks.

In the end, like everything associated with this disease, it's all a risk. You take your best shot and wait to see what happens. My body is saying "no more." That message is pretty clear. It's my mind that's the problem. How do you not worry? How do you turn off that uncertainty?

You don't. So I think I'll just take that break and hope for the best. Besides, no matter what happens during that couple of weeks, I know where I'll be when the break is over. Back on the poison.

6:37 AM ET | 11-13-2006 | permalink

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The Blame Game

There are a lot of angry people out there. We certainly saw plenty of them during this election season. Politicians have always tried to play and direct people's anger. You have problems? It's "their" fault. Whoever "they" are obviously depends on the audience and the speaker. But I think it's worse than ever these days. And politicians aren't the only ones. Cable news channels and talk radio have turned anger into an industry. Who cares what's actually true? Who cares what the facts are? Let's just be angry and feel better. After all, the world is much simpler when there's someone to blame.

So what about cancer? Is that something we get angry about, that we should be angry about? I think we all do get angry sometimes. Those feelings of, "It's just not fair," or, "Why me?" come welling up inside. But who or what do we get angry at? I don't think the cancer much cares, although it would be fun to think that those nasty little cells could feel our anger.

No, I think that more often we feel frustration. You can't do things you used to do. You feel crappy. Your body has changed. Your life has changed. It just shouldn't be this way. But it is. And anger or frustration, while totally natural and justified, don't help much.

It's hard on the caregivers, too. The frustration of not being able to help, of having to watch as their loved ones endure the pain. And they also, too often, bear the brunt of our anger or frustration. Unfortunately, they're close by, and there really aren't any other targets. Obviously none of us like to act that way, but sometimes you just can't help it.

Maybe we feel cheated. Our culture is telling us that there's always someone to blame for our problems, but cancer patients don't have anyone to blame. There's no one to hold responsible for the disease that has invaded our lives. So I guess all we can do is swallow that anger, vent it in other ways, use the energy for other purposes. Maybe we can set an example for others, but I doubt that they will hear us over all the yelling. But we can try.

7:27 AM ET | 11-10-2006 | permalink

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My Brain is Fine, But My Strength?

So my brain seems to be fine. Every time you write or say something like that, you open yourself up to all sorts of jokes, but I think I've heard them all by now. My doctor called last night. The brain MRI that I had on Monday came back clean. No new cancer. That's always good news. Most chemo isn't effective against cancer in the brain, the drugs can't pass through the blood barrier that protects the brain, so any new cancer would mean radiation, something that I'm not wild about. I had surgery for my brain tumor, I guess that's a one-time thing.

I also got a tiny nudge that reminded me that I am human after all. All this time, after almost a year of chemo, my blood readings were still, for the most part, in the normal range. I was tolerating this stuff about as well as anyone could. But now the chemo has dropped my blood-platelet level below normal for the first time. That means that I may need a little extra time for my body to recover before I have the next cycle. Nothing really to worry about, a few extra days would be a blessing, but that's one thing that I thought wouldn't happen to me. It does explain, however, why I feel so tired most of the time.

I'm a big guy. I'm not in as good physical shape as I was before this started, but I'm pretty strong. But it's funny, the strength, the physical strength you need for this fight, is a little bit out of your control. You just have to have faith that your body will do the best it can. Mental strength is a whole different issue. That is something that you have to work on, something that changes from day to day.

I remember walking into the chemo room for the first time. I thought, OK, you get a shot, or a couple of shots, take some pills, and life pretty much goes on the way it did before. Of course, I was dead wrong. It weakens your body, challenges your spirit, tests you in ways you never expected. As badly as I feel most days, I thought I was immune to many of the side effects. As with so many things about cancer, I was wrong.

6:00 AM ET | 11- 9-2006 | permalink

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Searching for a Reason

"I'm just trying to understand what's happened to me." So many of you have written in with some variation on that. I think about that a lot myself. Having settled — at least for the time being, I hope — the issue of whether any of us deserve what has happened, then how do we make sense of it? Is it just random? Genetics, diet, environment, and so on — none of those really provide a real answer. They may provide a scientific answer at some point, but I don't think that's what we're all looking for. We're trying to understand, not necessarily explain.

Some things do happen randomly. We have all heard the stories about the person who gave up a seat on a plane that crashed. Leave early one day and one set of events may happen; leave later, and a totally different day may unfold. That's long been the fodder for science fiction. But is cancer really that random? Just luck of the draw?

I think for people who are religious, the answer is easier, at least somewhat. Cancer is something that does test a person's faith. For those who are not religious, screaming "What happened?" out to the night sky is usually just answered by silence.

Do we really need to understand? Does it matter how and why my cancer developed the way it did? Knowing all that won't really change anything. And again, I think that what we're trying to understand, all of us, is the larger question. Maybe we just need to know that there is some answer to that question, that it's in our power to understand. Maybe it's just our conceit as human beings that the world, the universe, is open to our understanding.

Or maybe, in the end, we need to somehow find out that what has happened to all of us — the pain, the fear, the tears, all of it — is caused by more than some cellular malfunctions. Maybe if there is a reason that we can comprehend, then we'll feel better. And maybe asking that question is really just a reaction to the total disruption of our lives. In the end, maybe that attempt to understand is just a way of resisting, of denying the cancer any more power than it already has. Or maybe we all just have too much time to think about it all.

5:55 AM ET | 11- 8-2006 | permalink

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That's Not the Way It Works

First off, I hope that every one of you has gone out to vote, or are going to. Please do not let this most important responsibility go by without acting.

Now, on to today's subject.

I was reading People magazine the other day. Yes, I read it. I'm not ashamed to admit that. A little sheepish maybe, but not ashamed. Anyway, they had run an article the previous week about Farrah Fawcett being diagnosed with cancer. I was reading the letters to the editor, and one man wrote in to say:

"What did Farrah ever do to deserve this? She is a wonderful person and a true fighter who will conquer this complication in her life."

What did she do to deserve this? I told a friend I was going to write about this, and she said that she didn't think the writer meant it the way I read it. But I find it hard to read it any other way. I think at best, it's pretty insensitive. So here's my rant in response.

NONE of us did anything to deserve our cancer. That's not the way it works. Bad things don't only happen to bad people, and who are we to judge that anyway? Do people still really think that way, or was it simply a poorly chosen phrase? Cancer, as I have said before, is not a value judgment. We didn't somehow do something that brought this down on our heads. We're not bad people who deserve this. And yes, cancer happens to good people, bad people and people who are a little bit of each, like most of us.

Does this person think that if Farrah Fawcett had done something to deserve this, then somehow it would all be right? Justified? Again, I am just sort of stunned that anyone would think that way. Or maybe I'm just being too defensive. I was back at the hospital Monday for brain scans, and thinking about writing this blog, I was looking around the room.

There were old people, young people, people who looked like they were getting better, and unfortunately, people who are being ravaged by this disease. But none of them, NONE of them, ever did anything to deserve what has happened to them. To think otherwise is not only old-fashioned, it's cruel. And the last thing that any cancer patient needs in their life is more cruelty.

6:46 AM ET | 11- 7-2006 | permalink

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The Monsters out There

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

I watched the events of Sept. 11 unfold from my bed. I had literally just gotten out of the hospital after surgery for colon cancer. Everything looked good. My doctors were confident they'd gotten all the cancer. I just had to get through the recovery process, then pick up my old life where I left off. But on Sept. 11, watching those terrible events on television from my bed, I knew — along with everyone else — that picking up our old lives would be impossible.

We all lost some of our innocence that day. Random death from out of nowhere was no longer just an abstract concept, something that happened to other people. Everyone felt fear.

But those of us with cancer had already lost most of our innocence. The idea of random tragedy, that our lives would never be the same again, was already part of our experience.

Back in college, I studied terrorism. The world was different then, but one idea has stayed with me ever since. My professors taught that the goal of terrorism is to transform the target society. Not just to kill people, but to fundamentally change the targeted nation.

Am I going too far here in comparing cancer to terrorism? That statement applies to cancer just as well. It does transform everything. The way you feel, obviously. The way you think. The way you relate to others in your life. The things you think about.

Before being diagnosed, I don't think very many of us really worried too much about cancer. Oh, it was out there, along with all sorts of other problems. We all knew that when you walk out your front door, something bad could happen. But I don't think many people really think that it will happen to them. Until it does.

Cancer doesn't just assault our bodies. It attacks our view of the world and our place in it. Random bad things do happen, and they happen to us. To our families. To our friends. It's not just an abstract fear. We all like scary movies because we know we're not in that kind of danger. Except when we are.

I think that our parents were wrong. There are monsters out there. Sometimes they're in the closet, sometimes under the bed. Sometimes half a world away. And sometimes they live inside us.

6:38 AM ET | 11- 6-2006 | permalink

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The Fog and Fatigue of 'Chemo Brain'

"Chemo brain." It's a term that I haven't really used, but a number of you have talked about it. And I'm definitely feeling it today. It's that... well, how to describe it to someone who hasn't had it? It's a fuzzy feeling, like trying to think through a fog. Throw in a little bit of exhaustion and fatigue, and it doesn't leave you at your cognitive best.

I don't get it all that often. For me, it comes in the form of real lethargy. It's hard to concentrate. It's hard to focus. It's a little hard to write this blog sometimes and have it make sense. It's a little bit like the feeling you get when you've had one or two or more drinks too many, and you don't want to be drunk. You try to will yourself into clarity, but it doesn't always work.

It's tempting to just give in and sort of let the day go blah. As I write this, the director's cut of Alien is on TV, and it's very tempting. I will, however, avoid the obvious metaphor to cancer of the alien growing in that poor guy's stomach. Instead, because yes, I've seen that movie a million times, I'll just try to fight through the chemo brain.

And there's a little bit of depression that comes with it, too. I think that all of these feelings, these side effects, feed off each other. So what do we do? If any of you have suggestions on how better to cope with it, I'd love for you to share them.

For me, I know that it won't last forever. In a couple of days, as I get further into this chemo cycle, my chemo brain will clear up, that drug-induced fog will lift and I'll feel more like myself. That's something to look forward to. In the meantime, I guess all we can do is just keep fighting through it. And hope there's something good on daytime TV.

6:53 AM ET | 11- 3-2006 | permalink

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I Used to Be the Guy Who Went Out There

Well, it happened again today. I'm working on a documentary that focuses on the military. I've been trying to set up some filming overseas. And on the phone today, I ran into an old friend, an officer I had worked with in the Balkans years ago. We were talking business, and I had to explain that I was sending another producer on this trip, that I couldn't go. I think I mumbled something about having some "health issues" that wouldn't allow me to make the trip.

I'd had a similar conversation with another officer just a few days ago. Now, the term "health issues" really doesn't raise a red flag. Neither man asked what I meant. And quite honestly, I doubt that it mattered much to them. But it did to me. I used to be the guy who went out there. I prided myself in going where most people wouldn't want to. That wasn't just what I did — it was who I am. Or I guess who I was.

I didn't really see any reason to explain in either conversation that I have cancer. It just didn't seem relevant. But part of me wanted to blurt it out. So they would understand why I wasn't going to be the person getting on the plane. I think that is probably only important to me.

But there is a chance I will have to go over to Afghanistan. I asked my doctors if I could go, if there was any medical risk. Now, this is something of a long shot. It's unclear if that trip will happen and whether it will come at a point in my chemo that would allow me to go. Of course, my doctors also made it very clear that they think I'm nuts for wanting to go.

This isn't some sort of macho posturing. I'd like to go because that would allow me to take back a little bit of my old life, to be the person I was before my diagnosis. Maybe I just want to prove to myself and those tumors that they haven't taken everything from me.

Or am I just being silly? I'm fighting cancer. Is there any sense in going into a place where I could get hurt, and undo all the progress I've made? The obvious answer to that is "no." The surgeon who performed my first cancer surgery back in 2001 became a pretty good friend. I had a checkup right before I was scheduled to leave to be embedded in the invasion of Iraq. He looked at me and said, "Look, I've put a lot of work into you. Don't mess it up." Actually, I cleaned up his language in that quote, but you get the idea. The sentiment makes perfect sense.

But then there's that voice inside my head that says, "To hell with the cancer. Go do your job." I won't know how this will turn out for a while yet. But maybe just knowing that I could go, even if I don't, would be victory enough.

6:12 AM ET | 11- 2-2006 | permalink

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Safety Is an Illusion

I went to the movies the other night. I have to admit that one of my pet peeves is people who talk during movies. But even worse are those people who talk to the movies. At one point, one of the characters was about to go into a room where people were waiting for him. A woman a few rows in front of me called out "Don't go in there!" OK, a couple of things to be straight about. First, it's a movie. They can't hear you. Second, it's not up to you to save the characters. They're on their own.

And that not only lets me rant about bad movie behavior, it brings us to what I want to talk about today: safety. I guess that woman in the theater was worried about that character's safety.

We've talked about people whose cancer is in remission and their fear that it will return. A woman named Mari wrote in the other day to say:

"I feel like I'm always looking over my shoulder. I will never feel safe again."

Never feel safe again. That really is a scary thought. But when you think about it, when are we ever safe? I don't think it's the doctors' role to try to keep us safe. They are there to fix us when things go wrong. Can we ever really feel safe in any part of our lives? Are we supposed to?

Anything can happen when you step out your door. The world is full of random events and dangers. A car accident. Even a falling tree. Something bad coming out of nowhere. And our daily lives are full of risk and danger. Apply for that new job, you risk rejection. Dare to love, and you risk a broken heart. Dare to speak out, and you risk condemnation.

I know what Mari meant, of course. Having gone through cancer once, who wouldn't be afraid that it will come back? It happened to me. But I think that safety is an illusion. Life is an adventure, meant to be lived. It's full of ups and downs, triumphs and defeats, risk and reward. But never safety. Not true safety. So all we can do is pay our money, buy a ticket and take the ride. Even keeping your hands and arms inside the car doesn't mean it's safe. And I don't think it's meant to be.

6:38 AM ET | 11- 1-2006 | permalink

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