What About Everyone Else?

How do you know you have cancer? With all the talk about early detection and early treatment and all that, how do you find out? The first time for me was sort of a fluke. I went in to see my doctor about something else. We started talking, he mentioned that I was getting close to the age where a colonoscopy would be a good idea, and then I told him about my family history. Next thing I knew, I was having the scope.

And sure enough, to everyone's surprise, there was a tumor. The second time, I started slurring my words. I had been clean for four and a half years, coming up to that big five-year marker. A trip to the ER when the slurring got worse, and they found the brain tumor, and then the tumors in my lungs.

For those of us who have cancer, life becomes a series of scans and tests and so on. There's no question that we have cancer, we're concentrating on treating it. But what about everyone else? I think most women are good about self-exams and mammograms, but do most people have regular screenings for other kinds of cancers? Shouldn't they?

If early detection is one of the keys to a better outcome, why aren't people tested routinely? I guess it would be pretty expensive if, for example, everyone had a full-body CAT scan on a regular basis. There is a blood test for some cancers. It's not all that reliable, but it can still signal that there's something worth looking at.

Otherwise, it just seems like everyone just sort of hopes it doesn't happen to him, and if it does, then he deals with it as best he can. That's certainly what my attitude was. Even with a family history, I knew that I should get tested at some point, but that was the key phrase: at some point.

I guess that all I want to say today is this: For those of us who have cancer, our lives have moved way beyond this. But for those of you who don't, or who don't know, and especially those of you who have taken care of a loved one who has gone through all this, go get tested. Whatever tests that your doctor thinks are appropriate. Don't wait for cancer to come knocking on your door, because once it gets inside, like an unwelcome guest, it never seems to leave. Don't wait. Not a day.

7:14 AM ET | 08-31-2006 | permalink

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The Generosity of Spirit

Just about a year ago, I went down to Mississippi as a volunteer with the Red Cross. We ended up driving a truck through some of the worst-hit areas, handing out hot meals, snacks, cold Gatorade if we could find it, and best of all, toys to the children who had lost everything. And more times than I can tell you, people who were living in the rubble that had been their homes would say, "I don't need a meal today, save it for someone who really needs it." In the midst of that devastation, they hadn't lost their compassion for others.

This site is mostly about cancer and cancer patients, for obvious reasons. But then I got this note from Omar Zaki, an Egyptian oncologist:

"Thirty-six years in the speciality, and I ask the same thing about every one of my patients: 'Why him or her?' Then I think: 'There are more trying diseases like a stroke that leaves you paralyzed and dependent on others for your most basic needs for endless years, or multiple sclerosis, or AIDS, or Alzheimers... the list is endless.'"

He's absolutely right. The list of hardships in life is far too long. Cancer is a heavy burden to bear, no question. But then I think about a stroke victim, with a healthy mind trapped in a body that won't respond. Or people who have been crippled, and for whom every step is a new agony. And of course, for those with an obvious physical impairment, the stares, the questions, the looks on people's faces. All of that adds to the pain, too.

There are so many people out there who need our help, our prayers, our compassion. In the podcast this past Monday, I asked "Why me?" One woman wrote in and said she looks at a child that gets cancer, and asks, "Why him or her?" She's right, too, and when I read that, I felt a little embarrassed about what I had said.

There are a lot of people out there that have heavy burdens to bear. Victims of natural disasters, victims of crime, the homeless on the streets, people who suffer from all of the diseases that cause so much pain.

All of your responses have reminded me of just how much compassion all of you have. It's sobering to consider how many people need that in their lives, but I am encouraged by the generosity of spirit that I read in your notes every day. That is stronger than any disease.

6:47 AM ET | 08-30-2006 | permalink

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No New Side Effects Yet

I started a new drug yesterday: Avastin. This is the one I wrote about a few weeks ago — the one that has the potential for very serious side effects, such as bleeding in the brain. But I had a brain scan a few weeks ago and it was clear, so after a long talk with my oncologists, we decided to go forward. I am writing this having just gotten back from the hospital. I'm sort of listening to my body to try to see if there are any new problems.

There is one side effect that caught my eye. I was kidding about it with my doctor, and he said he knew that I was going to write about it. Gastrointestinal perforation. That's a scary term. It sort of brings up images of your stomach exploding or something like that. In truth, as my oncologists calmed me down, they explained that developing a hole in the gut is a very rare side effect of the drug that can happen if you just had surgery in the last month or two. Not something for me to worry about, although I keep looking down at my abdomen, expecting the worst.

The doctors are pretty excited about Avastin. It has shown some real promise in actually shrinking tumors, not just holding them in place. That would be terrific. Of course, this is also one of those times when you realize, as a patient, that your frame of reference is very different from the medical community. In tests, Avastin has, in some cases, led to about an extra four months of survival. That's great. Of course, as the patient, what would be really great would be four years. Again, just looking at the same thing from different sides.

One of the strange things about cancer is that it sort of makes you distrust your own body. After all, it, or at least part of it, is trying to kill me. Most of my body seems neutral; my lungs however, seem to have an attitude. You look at your body, and know that this war is going on, but it's all hidden from view. But I have put my body through some punishment. Maybe I should be more forgiving.

Bottom line, no new side effects yet and a new drug that may help — I think this counts as a pretty good day after all.

6:06 AM ET | 08-29-2006 | permalink

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That Little Nagging Question

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

"Relatively painless." "Almost casualty free." "Almost bloodless." Those are some of the phrases that have been used to describe recent military actions: Grenada, for those of you old enough to remember, where only a handful of soldiers died; same in Panama. Even in Desert Storm, the first Gulf War, the number of casualties was relatively small, compared with other wars.

And while those pronouncements were meant to be reassuring to the rest of us, I can't imagine how painful they must have been — must still be — for the families and friends of those who died. For them, it wasn't "relatively painless."

Instead, they must wonder why their loved one had to die. Why was the person they cared about one of those few? I don't know if it would ease their pain if more had been killed. I doubt it, but that sense that only a few had to pay the price still sort of haunts me.

What about the casualties of the war on cancer? It seems that virtually everyone is touched by cancer in some way. A friend, a loved one, a colleague. It seems like an epidemic. Hundreds of people have written in to the My Cancer blog, and most of the notes begin the same way: " I was diagnosed with cancer..."

Colon cancer, which is what I have, is the second leading cause of cancer deaths in the U.S. I have to admit, I was surprised when I read that colon cancer kills about 50,000 people a year — out of a population of almost 300 million. I expected the number to be much higher. That's a little higher than the number of people killed on this country's highways each year.

Now, God knows I wish the number of deaths was zero. But I thought about that number, and I thought, "Why me? Why can't I be one of the 229,950,000 people who don't die from colon cancer that year?"

There's no answer to that question, of course. Anymore than there is to the question of why one particular person may get up, get dressed and head to work, only to die in a traffic accident.

In the end, I guess, it doesn't matter. Whether you're one of only a handful with a rare disease, or one of thousands, it just doesn't matter. What matters is that it's happening to you. To your family. Your loved one. There is no solace in numbers. Multiply it out and hundreds of thousands are feeling the pain and grief of those 50,000 deaths.

But I have to admit that way back in my mind, selfishly, that little question still nags me every now and then: Why me?

6:51 AM ET | 08-28-2006 | permalink

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Wishing for a Normal Day

A lot of times, I sit at my computer, trying to figure out what to say on the blog. Writing this certainly forces me to stop and think about my cancer, what it has done to my life and what has happened to all of you out there. It makes me confront it every day.

It never really goes away, certainly not far away. The neuropathy — the tingling in my hands and feet — is a constant reminder that it's in there. While this is a week off from chemo and I feel pretty good, I know that I start the next cycle Monday, and that's weighing on my mind. I am certainly dreading that.

But there are just some days where I don't want to confront the big issues — the Cancer with a capital "C." I don't want to think about it. I don't want to think about how my life has changed, how my body has changed. I don't want to think about what I have lost or had to give up because of this disease. I don't want to think about my own mortality.

No, some days, I just want to have a normal day. Worry about work, bills, traffic — the usual stuff that makes up life. I guess this is just a long way of saying that I don't really have anything more profound on my mind today. It's just another day.

Except, of course, it's not. And we all know why. There are good days and bad days and days that fall in between, but there are no more "just-another-days." You can escape for a minute, an hour ... even a couple of hours. But it never, ever, goes away.

Maybe that's the real evil of this disease. It's not enough that the cancer takes over parts of your body. It takes over your life. You can push back, you can limit the damage, you can fight to hold on to as much of your life as you can, but in the end, it's always there. And I think that — rather than the fact that it will most likely cause my death — is why I hate it so much.

6:19 AM ET | 08-25-2006 | permalink

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There's No Such Thing as a Bad Survivor

A lot of cancer patients talk about the profound effect the diagnosis has on their lives and the way they live. It does change everything when the doctor looks you in the eye and gives you the bad news. A lot of us, and certainly a lot of you who write in, talk about a newfound appreciation of life, of trying to make something out of each day. Of living life to the fullest. Of being grateful for each day.

The other day, a woman named Trisha wrote in, and this is what she said:

I want to know since everyone who is a survivor lives each day to the fullest, then what am I, who is in pain everyday, often not getting out of bed at all? I am trying to get better, but the doctors are mostly unsure as to what to do with me, which is scary, but I know things could be worse. I can't die from pain alone, although sometimes I wish I could, which makes me feel even more guilty and unappreciative. Am I a bad survivor? How do you live each day and be nice and normal to your friends and family when you feel like absolute crap all of the time?

Her note made me feel like we have set a standard that can't be reached. Sometimes staying in bed all day is all that you can do. Sometimes you just can't do any more than sit in a chair and read a book, watch TV, or just sit. Those are tough days.

When we talk about living life, it doesn't mean that you always have to be at your best, that you're the life of the party. It doesn't mean that you're out climbing mountains or learning how to play a musical instrument or biking across Europe. That's not it at all.

I think that the best that any of us can do is just appreciate each day that we have, even the bad ones. If, like Trisha, you are overwhelmed by the pain, just do the best you can, just get through the day, in the hopes that tomorrow may be better. There's no such thing as a bad survivor. We're all just muddling through this.

I hope that Trisha — and all of you — can find one bright spot in each day, even in the bad days. Maybe it's something that makes you laugh, maybe it's the sunlight through the trees — it can be anything. It's life, and that's worth appreciating. So even on the bad days, just doing the best you can, just saying that you're going to try again tomorrow, that's a triumph. Savor it.

7:12 AM ET | 08-24-2006 | permalink

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Conspiracy Theories and Magic Bullets

Why isn't there a cure? There are thousands of people working on it. They have been working on it for decades. So why hasn't the cure been found?

Some people think that there's some sort of conspiracy. The hospitals and pharmaceutical companies make a lot of money treating cancer patients, so the argument goes, they don't want a cure. I just don't believe that, although some of my pills cost $80 apiece. Someone's making some money.

But I can't believe that anyone is somehow keeping the cure under wraps. First of all, there would be a huge amount of money to be made with a cure. Secondly, I don't believe in conspiracy theories, because in the end, I don't think people can keep secrets. Certainly not a secret like that.

But the main reason I don't believe it is that I believe that all of those researchers desperately want to find a cure. They want to help us. To feel otherwise would be inhuman. So let's file that one away.

So let me ask again. Why isn't there a cure? Is it possible that there is no cure? There may be treatments, but maybe there is no magic bullet. Maybe, like the common cold, we will be able to treat it to some extent, but a cure will forever elude us. Maybe chemo is the best weapon that we will ever have.

I've talked to a lot of people about cancer and why it seems so widespread. A century ago, most people didn't live all that long. They died of all sorts of diseases, diseases that today, we dismiss out of hand. So we seem to be left with heart disease and cancer as the main causes of death these days. Cancer was probably always there, but many people died before it had a chance to strike.

Can it be that cancer is so different, so complex, so difficult, that there will never be a cure? Or, at some point in the future, will some other writer use the same words that I used — a disease that we "dismiss out of hand" — but in reference to cancer. I hope so.

6:34 AM ET | 08-23-2006 | permalink

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Every Birthday Is a Good Birthday

"I will be 60 years old. I hate it, but it's true." That's what former President Bill Clinton said the other day. I think that President Bush, who turned 60 recently, probably said much the same thing. And we hear that a lot. "Omigod, I can't believe I'm turning..." and fill in the blank here... 30, 40, 50, 60.

My issues with age are a little different. I can't figure out how I got to be this old. I don't understand why I'm not still 30, but that's a whole different issue. Now a birthday crisis, especially at one of the "Big Birthdays," is a time-honored tradition. But I have to admit that these days, when I hear someone say that, I feel a little twinge.

A number of my doctors didn't expect me to make it to my last birthday. They're certainly unsure if I'll make my next birthday, and they're pretty much unanimous that they don't expect me to get anywhere near 60. So my feeling is — actually it always has been — that every birthday is a good birthday.

Now, a birthday is a good time to assess your life, wonder if you're on the right track, start paying a little more attention to the mirror, drink too much, feel a little depressed ... all of that is just fine. But if someone says, "I don't want to turn 30 or 40 or whatever," they'd better not be serious. Because there are a lot of people out here who would give just about anything to see their next birthday. And some of them won't.

President Clinton went on to say "Now that I have more days behind me than ahead of me, I try to wake up with a discipline of gratitude every day." Exactly. So after you've done all those birthday things, both positive and negative, have some more cake and face the next year. Because every birthday is a gift.

6:49 AM ET | 08-22-2006 | permalink

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No One's Business But My Own

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

There was an interesting case in Virginia last week. A 16-year-old boy, Abraham Cherrix, has Hodgkin's disease. Caught early, that form of cancer can be cured in 90 percent of children and teenagers.

But Abraham found his first round of chemo so debilitating that he decided to forgo a second one. Instead, he went on a special diet and turned to a form of treatment that was banned in the U.S in 1960 but is still available in Mexico.

A county social worker asked a judge to intervene. The first judge ordered Abraham to undergo whatever treatment his doctors decided on. The family appealed, and last week, they came to an agreement with the state. Abraham will be treated by an oncologist who's interested in alternative treatments. The court will get regular updates on his condition until he turns 18 or until he's cured. He doesn't have to undergo chemotherapy.

Clearly, if he were 18 or older, this would have never been an issue. But there are much larger principles at stake here. Who determines the best course of treatment? We all saw what happens when the system — and politicians — run amok. Like the Terri Schiavo case. Does anyone else have the right to intervene? Or should it all be left up to the individual and his or her family?

Society has an interest and responsibility to protect children. But we routinely try teenagers as adults for certain crimes. So who's to say that a young person isn't perfectly qualified to make the most important decisions there are: how to live and, if it comes to it, how to die?

Most people, certainly most people who haven't had to go through it, probably believe any measure that might prolong life or lead to a cure is worth taking, no matter how unpleasant. One of the hardest things someone can do is to stand helplessly while an order not to resuscitate a patient is carried out. You want to do something. You want to continue to fight. But that may not be what the patient wants.

As for me, I'm not ready to give up — not by a long shot. But I can absolutely understand how someone can reach that decision. It's not a decision to give up. It's not admitting defeat or taking the easy way out. It's simply making a decision on how to proceed. If the treatment is too painful, then it's easy to see how someone may decide that enough is enough, try some other form of treatment or simply let nature take its course.

Is it up to someone else to tell him or her what treatment to follow? Even if the treatment they reject may very well cure them?

We've talked about alternative therapies before. Many people believe traditional Western medicine doesn't have the answers. Don't they have the right to try something else? Of course they do, although I have to admit, some alternative treatments are hoaxes.

I think a lot of people think I'm kidding when I say that when the time comes, I'm going to Hawaii, laying my credit card down, and telling the bartender to keep the mai tais coming. I'm not joking. I'd much prefer that to spending my last hours in a hospital plugged into all sorts of machines. And that's my right. I sure as hell don't want anyone else to tell me I can't do that, or I'm giving up, or I should just try this one last treatment.

I have decided how I will live for the last 51 years. I will continue to decide what treatments to have and which ones to avoid. And when the time comes — whenever that is — I will also decide, at least in part, how I will die. And that is no one's business but my own.

7:23 AM ET | 08-21-2006 | permalink

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It's All About Getting Started

It's Monday morning — never my favorite time or day. But this morning I took the last batch of pills for this chemo cycle. My week off has begun. Of course, as many of you know, a week off doesn't start immediately. It takes a while for the drugs to get out of your system, so you really only get a couple of days of feeling pretty good.

For me, mornings are the worst. I stopped eating breakfast (I know — that's a bad thing) about forty years ago. But you're supposed to take the pills with food, so I have had to start eating in the morning again. I try all sorts of different things: bagels, fruit, even cold pizza. But mornings are tough because that's when the nausea comes.

When I first started this, I would take my pills almost as soon as I got up. That's slipped a little. Now I read the paper, do a little work and then, when I realize it's getting late, go for the pills. I wonder if some of the nausea isn't psychological. I start to feel sick when I know that I'm about to take the drugs. Of course, the pills do make you sick, so I guess it doesn't really matter.

Libby wrote in the other day to say this:

I find grabbing a bunch of my favorite songs on CD or an MP3 player and singing along as loudly as I can gets me to a point to getting started with the day. And isn't it all about getting started?

As I said, I've never been a morning person. My staff at Nightline knew to give me a little room early on, at least until my huge iced mocha had kicked in. That hasn't changed a whole lot — it just takes a little more strength to get things moving.

But Libby is absolutely right. Not about the singing — at least not for me. I can't sing at all. It's one of my great disappointments, I'm pretty sure I'm tone deaf. But it's all about getting started. There's a whole new day ahead of us. More challenges, more triumphs, maybe a few defeats, but more life. And isn't that all that we can ask?

6:44 AM ET | 08-21-2006 | permalink

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A Little Special Treatment

Kaspar Jansen, iStockPhoto

A man wrote in way back when this blog first started. He wondered why there wasn't a special lane at tunnels and bridges for cancer patients. Shouldn't we get some sort of special treatment to make up for all this? He was joking, of course, but it's sort of fun to think about. What would be fair compensation?

"Officer, I know I was going 90 miles an hour in a 25-mile-an-hour zone, but I have cancer." "I know I was supposed to pay my income taxes, but I have cancer." You get the idea. My personal favorite, which I'm actually dying to try, would be to call a popular restaurant, one of those that you have to book a month in advance. Ask for a table that night, and when they're done laughing, say, "But I have cancer." Would you get the table? It would be a fun experiment.

Of course, this would all get complicated. Would you retain your privileges if you went into remission? If the tumors shrank, would you still get a table? Maybe you would, but back by the kitchen? OK, I may be pushing the bounds of good taste here, but I'll bet that a lot of you have thought about something like this.

There is a serious side to this, too. We get a lot of attention, but not the kind we'd like. I sit in the waiting area at Hopkins sometimes and envy the people walking by with their hospital IDs. They're there to do their jobs. Then they go home. We're there for a very different reason.

People who have lost their hair or who have obvious physical symptoms get more attention than I'm sure they'd like. What a joy it would be for them to just be anonymous again — just another face in the crowd. I'm sure that a return to normalcy would be all that any patient would ask. But if that's not to be, is it really too much to ask that maybe we get a free ice cream cone or something now and then?

6:41 AM ET | 08-18-2006 | permalink

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The Things I've Learned

It's the little things that you have to learn. When I used to go into dangerous places, I'd always count the number of stairs. That way, if the power went out, I could still get out fast and in the dark without feeling for each step. I learned that powdered Gatorade would pretty much get you through dysentery, that you can live on tuna and peanut butter, and that a good driver is worth his weight in gold.

I don't need those skills these days. But I do need new ones. On days when the chemo really cuts down on my wind power, I need to remember which way to walk to work to avoid the big hills. I have learned to try to schedule everything a little later in the morning, to give me time to get over the nausea. I've learned how to rotate the veins they use for injections. I've learned that if I eat before I take the pills, and then just save a couple of bites for after the pills, they go down easier.

I've learned that on those days when I do feel really badly, that's OK; sometimes you just can't fight it. I've learned that when I'm feeling sorry for myself, I have to remind myself that there are many out there fighting much tougher battles. I've learned that a prognosis is just a number, and it doesn't have my name on it.

I've learned that there are things I can do and things I can't do and things where I just have to try a little harder.

Now, old habits do die hard. I do know how many steps there are in my house. And that comes in handy when I head down to the refrigerator in the middle of the night.

But most importantly, from all of you, I've learned that I am not alone, and that I can still make a difference.

6:32 AM ET | 08-17-2006 | permalink

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We Don't Stop Being Your Friends

It happened to me again this past weekend. I was talking with a friend, and he was telling me about some of the problems he was facing right now. And almost immediately, he said he felt guilty about telling me about his problems. That his problems paled in comparison with mine. So I said what I always say. "That's wrong, your problems are real and are no less real because of my health." But of course, I can tell as soon as I say that that my words have had no effect.

So here's my plea to all of you out there who do not have cancer. Don't take that away from us. And by "that," I mean the opportunity for us to be your friends, to worry about you, to feel badly about your problems and to offer advice or consolation if needed. That's so important. Just because we have cancer, does not mean that we stop being your friends.

Two of my best friends, Alex and Franci, are members of a camera crew based in Austria. We have been through a lot together — the invasion of Iraq, Kosovo, Israel, Gaza and many other hot spots. They are two of the bravest people I know. They have just finished up a couple of weeks on assignment in Beirut.

And even while that city was being bombed, while they were in danger, they sent me e-mails wondering about my health and how I was feeling. And I would write back that I was worried about them. We've all been through so much together, you worry that at some point, it's going to catch up. But that's what friends do: they worry about each other.

It's easy when you have cancer to become pretty self-centered. It does sometimes seem to be "all about me." But if I start acting that way, I hope one of my friends will slap me and tell me to snap out of it. I don't just have friends, I am a friend. And these days, more than ever, that is something that I treasure.

7:13 AM ET | 08-16-2006 | permalink

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Did We Try to Make a Difference?

We all talk about the "war on cancer." The "fight against cancer." People call cancer patients "warriors," "fighters," and so on. I've used those same terms. But a woman wrote in to the blog the other day, and what she said made me pause.

She lost her daughter to cancer. She asked if there is a "war on cancer," does that mean her daughter lost? That she somehow failed? That was a couple of days ago, and I've been thinking about it ever since. And I still don't know how to answer her.

Of course she didn't fail. A while back, I was talking to one of my doctors about the spread of my cancer. He said something like, "Well, when you failed the chemo the first time..." At the time, I thought that that was a harsh way to put it, but within a second, he corrected himself, saying, "When the chemo failed you."

For many of us, the outcome of this fight — and yes, it is a fight — is not going to be any surprise. The cancer, in the end, will most likely be what causes our deaths. But everyone dies. If you want to put it that way, everyone loses that one fight.

And this is a fight for which there is no shame in losing. It's how you live, how you fight, that matters. For some people, they give it everything they have, fighting and struggling for every day. Others come to peace with what is happening, and choose not to fight any longer. There's no right or wrong in either of those positions, or anywhere in between.

What makes any of us win, is what we do with the time we have — the same as for people that don't have this disease. Did we try to make a difference? Try to do the right thing, especially when it wasn't the easy thing? Did we try to leave the world a better place? Did we speak out for those with no voice? Those, to me, are the questions that determine whether or not we win, not the war with cancer, but whether or not we win in life.

7:04 AM ET | 08-15-2006 | permalink

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Garlic Cheese Bread (and Other Acts of Defiance)

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

The day I was first diagnosed with colon cancer, back in 2001, was pretty much a blur. I remember waking up from the colonoscopy, and seeing my doctor's face. I remember his words. I was still pretty groggy from the drugs. He finally sent me home, as he told me later, after I asked him for about the 10th time if I was going to die. I don't remember doing that at all.

We went out to dinner that night, a local seafood place. Nice, but not one of my favorites, luckily, because we never went back there again. It was forbidden. Not even worth talking about. It didn't bother me so much, although I did like their popcorn shrimp.

Five years later, we were out to dinner again — this time at one of my favorite Italian restaurants. That's when Laurie realized that my face was starting to droop. It turned out to be a symptom of a brain tumor. We never finished that dinner. We went straight to the emergency room, and I didn't go home for a couple of weeks.

But this Italian restaurant was one I didn't want to lose. They have great garlic cheese bread. I didn't see a reason to let cancer stand between me and that bread. So two weeks ago, the night before I went back in for scans that were pretty important, we were back at that restaurant, back at the very same table.

I've already talked about the results of the scans the next day. They weren't good. Of course that has nothing to do with where I had dinner. But this isn't as frivolous as it sounds. Because that dinner wasn't just a superstitious gesture, it was an act of defiance.

Now I'm sure that sounds silly to some of you. But I think a lot of you will understand, those who share the journey I'm on. You lose control of so much when you're diagnosed with cancer. So you try to hold on to as much control as you can, even if it's just where you go for dinner. In so many ways, large and small, you want to show yourself — if not the world — that you haven't lost yet. You're still in charge.

Your act of defiance can be small (and maybe petty) or large. It doesn't matter. What matters is that you make it. The cancer may not be paying attention, but I sort of hope it is somehow. After all, I want it to be uncomfortable. I want things to be unpleasant for those tumors. I want them to know that I'm not going quietly. And I want them to know that sometimes, garlic cheese bread is more than just an appetizer.

6:50 AM ET | 08-14-2006 | permalink

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A Skeleton Scan Comes Into View

Well, my brain scan was clean, and I got to see my skeleton today. Now I have to admit, that in all my years of writing, that's a sentence that I never thought I would write. Today was another scan day, MRI on the brain and a complete bone scan, that was a new one. And I learned a lot.

First, I learned that I am still too large for most hospital machines. I just didn't fit in the bone scan tube, they had to do a separate picture of my feet. I can't imagine what they do if someone really big comes in. Where do football and basketball players go?

But the doctor was kind enough to let me look at my skeleton. I had been badgering her about what the scans showed, and she was adamant that she couldn't tell me anything. That's drilled into all of them, and rightly so. But she did let me look, probably just to shut me up. It was pretty cool. I didn't really know what I was seeing, beyond the skeleton itself, it takes a trained professional to really read it. I did see the bright white spot on my spine though, that was obvious. There was the tumor.

There was one strange thing that happened. Another doctor came in while I was on the machine and said she wanted to go over my history. She had it all right, the original tumor, the brain tumor, the spread, and so on. And then she started talking about my bone pain and the problem with my left hip. I don't have a problem with my left hip. My first thought, of course, was now I do. But it turned out she was thinking about another patient, but that kind of thing scares you. It's hard not to think, maybe she was right?

The MRI's are old hat now. I do fit in that machine, although it's a little snug. You lie there and are bombarded by really strange sounds. Again, I tried to pump the radiologists, but they didn't give up a thing. I was expecting my doctor to call me on Monday with the results, and trying to tell myself it was no big deal, I could wait, but then I got a surprise call and an early read. The brain was clean. That's some of the first good news I've gotten in a while.

Oh yeah, the cold intolerance hasn't been so bad. I had ice cream last night. So all in all, not a bad day.

6:32 AM ET | 08-14-2006 | permalink

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Playing 'Normal'

Well I sorta told a lie today. Actually, it wasn't really a lie, I just didn't tell the whole truth. I was talking to a guy at one of the places I work. He needed a tape that I had, but I just didn't feel up to taking it into the office today. This round of chemo has hit me pretty hard, at least so far. I'm tired, my stomach is upset, and it's tempting to feel a little sorry for myself.

So I told him that I was sick. That's true, certainly. But I didn't say why. This was someone that I didn't really know, and quite honestly, I just didn't feel like going through the whole conversation. It was easier to say, "I'm just not feeling good today," than it would have been to say, "I feel really crappy today because I'm undergoing chemo for Stage IV colorectal cancer with lung and spine mets."

And I think doing that wouldn't have been fair to him, either. There was no reason to put him on the spot. He doesn't know me, so why bring it up at all? We've talked before on this blog about what and how much to tell others, for their own sakes. But sometimes I don't say anything for my sake. I just don't want to have "The Conversation" again.

All I really wanted was to just be someone who couldn't go into the office today because he wasn't feeling good. Something that happens every day, that happens to everyone. I didn't want to be special, I didn't want to be a Patient with a capital "P." I didn't want to be terminal. Not today. I just wanted to be like anyone else.

Maybe he even thought I was slacking off, playing hooky. There's some satisfaction in that, too. There are a lot of cliches that sort of apply to this: The bell can't be unrung, the genie can't be put back into the bottle, and so on. Once you tell someone your diagnosis, they'll never look at you the same way again.

I guess I wonder sometimes if my friends and colleagues ever think about me as Leroy, not Leroy Cancer Patient. That's not a criticism of them in any way. I just hope that sometimes they don't think about it, either.

3:31 PM ET | 08-11-2006 | permalink

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The Boxing Coach

Our friends. We've talked a lot about them. How to tell them, how much to tell them. What we need from them and those friends who stand by us, and those who, for their own reasons, find that impossible to do. When I was on Talk of the Nation last week, one man called in to ask how he could help his friend. He wanted to help so badly, but didn't know how.

But we really haven't heard from those people that we rely on so much. I can't imagine what it's like for them to get that call, or e-mail, or face-to-face talk when we deliver the news. I have a friend named Joan Lynch. She made me promise to describe her as "tall." She's one of my friends who gets the whole unvarnished truth from me, whether she wants it or not. Unfortunately, I am not the first person in her life to face a terminal illness. So I asked her for her thoughts on being a friend in need.

I feel like a pinball. I feel like people can see that I'm only partially functioning. Coping is a great word. But the thing is, people kid themselves into believing that they are coping. Often, they (we) aren't. We're surviving. And we've all heard of survivor guilt. It's about pretending to be stronger than you really are. It's about finding what it is that you can actually provide.

I liken it to the role of a boxing coach. Standing in the corner of the ring, watching, cringing, imagining you can feel the pain of the person fighting the fight. In some weak moments, you look away and wish for it all to end because it looks so brutally hard. But then you realize what that means. It means you might not believe in the fighter. It means you may not be sure they can take so many hits. It means you might have doubt. It means admitting just how hard it is for you to helplessly watch. So you regain your composure and once again begin to root the fighter on. And then come those quick, highly stressful moments in between rounds when you have the privilege and responsibility to look into the eyes of the fighter, to wipe away their sweat, blood, tears. You tell them how strong they look and how they are bigger and better than the opponent and will obviously emerge victorious. And then, when the fighter goes back in for yet another round, and the noise in the crowd (your head) is so freaking loud, you hope that no one can tell that you are in complete agony. And you hope it's not obvious that you don't really know if you've helped them in any way prepare for a possible loss.

When something like this happens, society tells you that you are supposed to protect and support the person going through it. Your first instinct is to take care of your friend. The second, which follows closely behind, is a feeling of "who's gonna protect ME from this?" The struggle is really selfish, but it's human. It's what causes us to be strong for our friends and then go home and curl up in the fetal position when no one can see. And the worst part is that the person you want to support you in your struggle is the person who has a much bigger fight to fight.

No one really tells you that mourning the loss of the friendship in its current state is OK and sometimes necessary. Friendships do change because of illness. They become stronger or they go away depending on the person. People need to prepare themselves for that as much as they need to prepare themselves for a possible loss.

Having been through this with my friend Arlene (she died at 39, leaving behind three kids) I will say this: People get nervous around the idea of death, even though it's inevitable. But when you love someone and you are given the gift of being able to be a part of something so intimate, you learn more about the strengths of your loved ones than you ever thought was possible. And IF the disease takes the life of someone you love, there are equal amounts of brutal sadness and a profound respect for your friend who actually fought the fight.

-- Joan Lynch

6:56 AM ET | 08-10-2006 | permalink

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Looking for New Tricks

Dan Brandenburg, iStockphoto

What gets you through the day? I write almost every day about what's happening with me, but today I'm going to ask for your help. How do you cope? I'm sitting here on the second day of this round of chemo, and quite honestly, I don't feel great. Oh, the side effects are familiar, like that unwanted relative who comes to visit every year. There aren't any surprises. And I know that time will simply have to run its course. In about two or three days, my arm will stop hurting. In another three days after that, I should be able to have cold things again. It's just a question of getting through each day.

So I want to hear from you. I want to know about your tricks. What gets each of you through the days? Is it food, a particular treat? My current one is Oreos — they help the pills go down easier. At least that's my excuse, and I'm sticking to it.

How about a particular song or CD? A favorite movie? A book that's become an old friend to be read and re-read? Or a quote — something you read or heard or that someone said to you? A friend of mine just sent me her lucky charm — something that she was given years ago — and she felt I could use the luck. I will treasure it. So is there something in your pockets or purses? What's lucky? A favorite piece of clothing?

This is a time to share. I do this out of curiosity, but quite frankly, I'm sort of running out of tricks myself. I'm looking for some new ones. So please, take this opportunity to share some of the things you have learned or discovered. I can't wait to see the responses.

6:43 AM ET | 08- 9-2006 | permalink

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The Warriors Need a Better Plan

Play to win. That's pretty much the way I've tried to live my life. It's not enough to win the game — you have to beat the opponent. Yes, I'm a pretty competitive guy. And playing to win means taking a gamble, going for it, being bold.

Well, I started chemo again today. As I write this, my right forearm is numb and my hand, where the IV went in, is pretty sore. But the game plan has changed. We're not really playing to win. Early on, the doctors were brutally honest with me. They said that "cure" and "remission" probably weren't going to end up in my file. The cancer had progressed too far. Doesn't mean it can't happen, but it's pretty unlikely.

So I find myself playing "not to lose." If a win isn't in the cards, I'm stalling, playing for time, trying to go as long as I can without losing. We know the chemo I went back to held the tumors in check last time. We're all hoping that the same thing will happen this time. But again, that's just buying time, hoping for a breakthrough, hoping the next thing we try will work. This is, after all, a field where a new treatment leading to an additional four months of life is seen as a victory. That's what my doctor said today.

I understand the way this game is played. But you know, in my heart, I still want to play to win. I don't want to just survive; I want to beat this thing into submission. Humiliate it on its own court. OK, sorry, getting a little carried away. But playing it safe, watching the clock, hasn't really been my way. I'm finding it hard to play by different rules now. In fact, I don't think I will. There's still time on the clock — who knows what can happen?

So while I have been butchering sports metaphors, Laurie, who has spoken about her feelings here before, has been thinking about the war on cancer, and she's a little angry.

War is nasty business. We are in one that we can't seem to make much of a dent in, and there is clearly no way out. It's the same old story. Our armor isn't up to the task. We're made little progress. Small victories in hot spots have saved a few lives, but in the places where the enemy is entrenched, we're still behind the eight-ball.

In many battles, we're still fighting with decades-old equipment. The men and women who are leading the fight in this war talk the good fight. They have great credentials, but for some reason, there hasn't been the breakthrough we've needed to stomp out this pervasive enemy.

We have to rely on our troops to get results. They are fighting with everything they've got, just to survive — only to face the same battle again and again. I have one of those warriors living with me. Every day he goes into battle against this enemy. Every single day.

I watch him and can't imagine having that kind of strength, mind and body. So, let's hear it for the warriors. They are the tip of the spear in this war. It's time for the folks in the white lab coats to take their places on the front lines. The warriors need a better plan.

6:54 AM ET | 08- 8-2006 | permalink

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No One Can Help You Decide

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

I trust my doctors. I think they are doing everything they can for me. But one of the most shocking things in this whole process was the first time I heard the doctors say, "We don't know." How could that be? I always thought the doctors would know exactly what to do. But they don't.

That's not a criticism. It's just that, in the world of cancer, no one can know ahead of time how you will react to a given drug or treatment. They have studies, they have averages, but none of those things help when it comes down to one individual — when it comes down to me.

They lay out the options, give their recommendations and then ask, "So what do you want to do?" How can you make that decision? There is a relatively new drug that shows real promise in fighting colon cancer. But some studies seem to show that it can cause bleeding in the brain in people who had brain tumors before. Like me. You don't need to know much about medicine to know that bleeding in the brain is a bad thing.

This coming Friday, I'm going to have another brain scan. If it's clean, then my doctors are suggesting that I consider that drug. They think that the chance of bleeding would be minimal. That's the easy part. Here's the hard part. Bleeding in the brain essentially means stroke. That's pretty scary. A stroke on top of cancer would be more than anyone could probably take.

So how do I decide? How do you weigh the risks of shrinking the tumors versus a stroke? In the end — after all the words, the studies, the graphs — you're left alone with a decision to make.

A lot of you wrote in to my blog last week when I found out that my cancer had spread. The notes were all wonderful. I had written that I had to decide between two different types of chemotherapy, each with its own unpleasant side effects. Again, it's sort of unclear whether either will be all that effective, you really don't know until you try.

But all of you were unanimous on one thing. Just make the best decision you can, and then move forward and don't look back. Don't agonize over the decision once you make it. No second-guessing.

I've always been a pretty decisive person. When I was running Nightline, I would try to make decisions right away. Part of the reason was that there was always another decision that had to be made after that, and another one after that one. But those were decisions about journalism, which I do know something about.

These cancer decisions are different. You search your heart and your head, and wait for the right course to make itself known to you. Or you simply flip a coin, roll the dice, pick your metaphor. No one else can really help you decide. And yes, some of these can be life and death decisions.

At least on this one, I have about another week to think about it. But a stroke? I'm willing to gamble, but that's about as high stakes a game as you'll ever find.

7:11 AM ET | 08- 7-2006 | permalink

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The Traditional and the Not So Traditional Treatments

So far I've relied on traditional medicine — chemotherapy, radiation and so on. There are new drugs being tested all the time, and some of them show real promise. They are all variations on the chemo theme, but many of the new ones hold out the promise of fewer side effects.

I had my brain tumor removed by traditional surgery, and the area in the brain where the lump had been was cleaned up by radiation that was very tightly focused. But those are really the three legs of current medical practice: chemo, radiation, and surgery.

Are there other ways to attack this? Of course there are. Many people believe that diet is the key. I've already rejected that one. I'm not about to give up the foods that make me happy. If a hot fudge sundae shortens my life, that's a trade I'm willing to make.

Some people turn to acupuncture as a way to lessen the side effects of chemo. It wasn't that long ago that acupuncture was thought to be out on the fringes. No more. Now hospitals offer it to their patients as part of the overall medical treatment.

Years ago, Laetrile, made from peach pits, was thought by some to be a miracle cure. People went down to Mexico to get it, but in the end, it turned out to be a bust. But there are lots of other things out there today. Certain fruits, mushrooms and even scorpion poison are being looked at as possible weapons in this fight.

So as a patient, what do you choose? I guess I'm a traditionalist at heart. I'm putting my faith in the doctors up at Hopkins. But I think each of us has to choose the path that's right for us. I worry sometimes that people are being taken by some of these "cures." Are they frauds? Ways to cheat those who have already been cheated by cancer?

One of the things that virtually all cancer patients believe is that attitude is so important. Maybe just believing in the power of whatever treatment you are taking is key. And let's face it, if traditional medicine doesn't seem to be working, some people will turn to non-traditional treatments out of desperation, willing to try something — anything.

I'm not going to criticize any of them. Quite honestly, I don't know a lot about many of the non-traditional treatments. Maybe I should, but I think if it gives hope to the patient — real hope — then why not try it?

6:50 AM ET | 08- 7-2006 | permalink

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A Frosty Toast to the Future

Ice cream. Iced tea with lots of ice. Frozen drinks. Cold beer in a frosty mug. Those are my plans for this weekend, because come Monday, all of that stops. I'm going back on chemo. We've gone back and forth on which chemo to try: a new one that has pretty awful side effects, or the old one that also has awful side effects, but that we know held the tumors in check.

So after a lot of conversations with the doctors and just thinking about it on my own, we're going to go with the old chemo. Here's why. We know that the original chemo drugs were somewhat effective. Hopefully, they will be again. By trying that first, we hold the other drug combination in reserve. If this one doesn't work, we'll switch to that one and there's another one to try after that.

The worst side effect of the original chemo is an intolerance for cold things. No cold drinks. Nothing straight out of the refrigerator. That lasts about a week. And, of course, we're in the middle of a heat wave. Timing is everything.

I'm fine with this decision. As so many of you have written, make the decision and then don't look back. But there is one thing that I do worry about. This chemo regimen should last about five months. If it doesn't work, then we'll try the other one, and ideally, that would also last about five months. But I've already been on chemo for most of the last eight months. I wonder if I'll be able to get through another ten.

At a certain point, as most of you know, the side effects can just get to be too much, and you have to stop. I also now know the dangers of stopping for very long. But that's something to worry about in the future.

Before I have to sit back down in the chair on Monday and be hooked up to that machine again, I'm going to enjoy every cold thing I can find. I'll lift my ice cream, cold drink, beer, or whatever to all of you and to the future.

And before I forget, thanks to all of you who listened to me on Talk of the Nation yesterday, and thanks to all those who called in. I hope we can do that again.

6:35 AM ET | 08- 4-2006 | permalink

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The Load We Carry

There's a wonderful book called The Things They Carried, by Tim O'Brien. I read it again every couple of years and always get something new out of it. It's about Vietnam, but it's also about much, much more. O'Brien writes about the things that soldiers carried, the things they had to — weapons and equipment — and the little things that they carried just for themselves.

I have a confession to make: I have stolen his idea before. Sitting in the Kuwaiti desert waiting for the invasion of Iraq to begin, we were out of ideas for stories. But then I remembered the book, and we went around asking soldiers what they were carrying. Letters from home, pictures, good-luck pieces — even a surprising number of teddy bears. It was one of my favorite pieces.

And as I sit here, writing about cancer and the struggles that we are all going through, I started to think about the things we carry. All of our actions, good and bad. Words spoken that shouldn't have been. Words not spoken that should have been. Loves, found and lost, and those that never were. Times we were at our best, our worst, and when we were just plain human. Memories, wishes, dreams. It's a heavy load.

O'Brien also talks about the term "humping." It's a term that I think started in Vietnam, but may have been around much longer. It means to carry something, usually something heavy, over rough terrain. Or just to travel that tough path.

Journalists have adopted the term. "Just hump your gear over to the plane," or something like that. For those of us with cancer, sometimes the burdens can seem extra heavy. We carry — no, we hump — the pain, the anxiety, the fear and our loved ones, too. All of that on our backs, or at least, it can feel like that.

It's tempting sometimes to think that we should discard some of the load, or maybe even set the whole burden down. But those things that we carry are what make us who we are. Each one is precious.

I think I can hump my load a little while longer.

One note: I'm going to be a guest on the NPR program Talk of the Nation this afternoon. It's a call-in show, so I hope that some of you can call in. The number is (800) 989-8255.

7:14 AM ET | 08- 3-2006 | permalink

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Ready for the Next Shot

Remember those inflatable punching bags we had as kids? You'd hit one as hard as you could, it would fall back and then pop right back up to take another shot. I think most of those bags had clown images on them, although I don't know why someone thought it was a good idea to teach kids to beat up clowns.

But that's sort of what it's like to be a cancer patient. You get kicked in the gut, fall down and then pop back up again, ready for the next shot. At least you try to be ready. That's pretty much the way I feel as I write this.

Yesterday I got the bad news that my cancer has spread. But I woke up today and I feel the same as I did yesterday. I look the same. I still have things to do. Life goes on, whether it's convenient to us or not.

I still haven't made my decision as to how to proceed. Obviously, I'm thinking about it all the time, but I think that the right choice will become clear in the next day or so. The doctors are supposed to call later today to give me their thoughts, but I already pretty much know what their positions are. In the end, this is one I'm going to have to make.

It's tempting sometimes to just curl up on the floor and give up. I know that every once in a while, the thought will come crashing into my head that maybe it would be better to just lay my burdens down. But that thought only lingers for an instant.

I want to thank all of you who wrote in with such kind words of encouragement. Those notes mean the world to me. I hope that for someone out there who's feeling like they just can't take another punch, that my words might encourage you to keep fighting.

I remember that after enough punches and kicks, those inflatable things usually sprung a leak and deflated for good. It's likely that in the end, my cancer will win. But I'm going to keep popping back up after each punch as long as I can. I'm sure as hell not going to make it easy for the tumors. I'm going to make them work to get me.

6:40 AM ET | 08- 2-2006 | permalink

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Bad News and Difficult Decisions

I had my scans today. They were training a new nurse who couldn't find the vein in my hand for the IV. These days, that passes as a minor annoyance. We were going to meet my oncologist in the corridor to just go over some logistics about future appointments.

When he showed up, he said, "Let's find someplace to talk." I'm sure you all know what that meant. Sure enough, the news was bad. I had been on just one chemo drug for the last couple of weeks, in the hopes that it would hold the tumors in place. Well, it didn't. The tumors in my lungs have grown. All that happened in the eight weeks since I stopped the major chemotherapy. My cancer just turns out to be pretty aggressive.

That had always been my worry about taking a break. Would taking a break or taking just the one drug allow the cancer to spread, undoing whatever good the chemo had done? Well, unfortunately, I was right to worry. One step forward, three steps back. The tumors are now bigger than they were when I first started chemo back in January. How could everything I went through — the nausea, all the side effects — be for nothing? I guess there's no good answer to that.

And then it got worse. In those same eight weeks or so, it appears that the cancer has spread to my spine. I have to admit I am shocked. That one never occurred to me. The strange thing is that I still have no symptoms.

I'm sure most of you know where I am now. Your ears are sort of buzzing; you don't know what to do. There's really very little you can do, except maybe shake your head at the way things turn out. I had tried to steel myself for bad news, but that never really works. It certainly didn't today.

And so I face some difficult decisions that have to be made pretty quickly. Do I try a new combination of chemo drugs? That may be more effective, but then it might not. And if it's not, as fast-moving as my cancer appears to be, that time lost could be catastrophic. Do I go back on the old chemo drugs, which we know held the tumors in check? That may be safe, but then I'd still have that nagging thought in the back of my mind: Would the other drugs have been more effective? Would they have shrunk the tumors? There's no way to know. This is crapshoot medicine. You pick one course and take your chances. Turns out that the timeline for either choice is about the same, in terms of survival.

Or I could do nothing, opt for a better quality of life in the short-term, but know that, unchecked, the cancer will be merciless. So what to do? I'm looking at a lot more tests this week — bone scans, brain scans and so on. But in the end, I'm simply going to have to make a choice. And for the life of me, no pun intended, I just don't know what to do.

6:26 AM ET | 08- 1-2006 | permalink

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