The Wildest Roller Coaster

If having cancer is like a roller coaster ride, I'm on the wildest coaster there is. I was waiting to hear about scheduling the gamma knife procedure. I was a little impatient; I just wanted to get it done as soon as possible. And then my doctor called with very different news.

This may all have been a mistake. I may very well not have a new brain tumor. If yesterday's news was like the biggest drop ever on a roller coaster, this was like doing a complete circle. The doctors spent the morning going over all the scans that I have had over the last six months or so. The MRI essentially takes slices of you; it takes pictures every five millimeters. It takes pictures horizontally and also vertically. The problem was that what appeared to be a new tumor was smaller than that; it literally slipped between the cracks.

When they compared all the scans, and all the pictures both vertical and horizontal, the consensus seems to be now that whatever they are seeing, it's not something new. It's probably scar tissue from the first tumor and the operation to remove it. We'll do a new MRI in four weeks to see if it has changed at all. There is also no swelling around it, which reinforces the idea that it's nothing new.

My doctor apologized, but I honestly feel there is nothing to apologize for at all. First, I'd rather err on the side of pessimism, and then find out that you're wrong. So I've spent the morning trying to reach all those people whom I gave bad news to yesterday, and telling them today's good news. And that includes all of you. I am so grateful for all of the notes of support that you all sent in. Those notes are worth everything, whether I have a new tumor or not.

So I guess I'm back to where I was two days ago, saying I apparently have no active tumors. As Gilda Radner's character used to say in the very early days of Saturday Night Live, "Never mind."

Leroy Sievers

5:48 AM ET | 03-30-2007 | permalink | comments (85) | e-mail post

Not the Words I Was Hoping to Hear

"It's not clean."

This was the phone call I had been waiting for, but not the words I was hoping to hear. My oncologist was calling with the results of my MRI. I had been trying to steel myself for bad news, but that never really works.

They found a new, very small tumor in my brain right next to where the original one had been. While we'll never know for sure, it's likely that some cells were left from that original tumor, and they grew. But we've found it early. The first one was about an inch long. This one was described as about one-quarter the size of an M&M. I think that's the scientific scale you use for tumors.

The good news is that nothing new showed up on my spine. And this new tumor is one we can deal with. I'll most likely have the gamma knife procedure again. That is a machine that focuses radiation as exactly as a laser. It's a one-day procedure. The worst part is that they have to screw your head into a frame so that they can immobilize your brain. Literally screw it in. With wrenches and screws directly into your skull. Sort of the Home Depot version of surgery. After that, it's painless. You just lie there and the machine does its thing.

I've been telling people the news and they all ask if I'm OK. My answer is, "I guess so." I mean, I don't really have a choice. And like I said the other day, none of this is new, there's no unknown to fear. It's just a question of dealing with it. Obviously, I'm disappointed. My time with no apparent tumors was much shorter than I had hoped. But hopefully, once we've taken care of this one, I'll be back in that same situation.

I knew all along that it would come back at some point. And I'm sure it will come back again after this. This is going to be a long struggle, one that will last the rest of my life. It's just another drop on that roller coaster we all know so well.

Leroy Sievers

6:04 AM ET | 03-29-2007 | permalink | comments (72) | e-mail post

The Disease Has Lost its Mystery

I have to admit I'm a little nervous. I had a brain and spine MRI yesterday. I probably won't get the results until sometime today or tomorrow. This is really the first scan since I had the last RFA treatment, since we thought that all of the tumors had been killed. I'm not so worried about my brain -- I think I'd know if I had another tumor there, but I am a little concerned about my spine. After all, the last two tumors I got showed up there.

Now I've been trying to get myself ready for bad news. We've all been through that before. You try to prepare, but you know you really can't. Whether it comes today or a month from now, I know at some point, there is going to be bad news. I think it's pretty likely that the cancer will come back.

That, of course, will be a difficult day. Maybe it doesn't scare me any more, or at least not as much as it used to. When you're first told you have cancer, that there are tumors in your body, some of the fear you feel is the fear of the unknown. What will it feel like? What will treatment feel like? What's happening to me?

At this point, I guess I'm a veteran. I know the answers to most of those questions. If the cancer comes back, there will be some decisions to make: treatment to decide on, the usual stuff. Don't get me wrong, I'm certainly not going to be blase about it if it returns. I'm just saying the disease has lost its mystery. It's like when you're a little kid and you're certain that you see a monster in your room. You turn on the light and realize it's just a shirt thrown over a chair.

For better or worse, cancer and I know each other now. It can still hurt me, or at least try to. But it's going to have to work a lot harder to scare me.

Leroy Sievers

5:36 AM ET | 03-28-2007 | permalink | comments (28) | e-mail post

Concentrate on the Important Questions

A woman wrote in last week who's suffering from a brain tumor. She asked, "What did I do to cause this?" That's a question that, if you allow it to, can eat you alive. There are so many possible causes for cancer out there. The environment is filled with substances that may or may not cause cancer: Microwaves? Our cell phones? And what about diet?

We can't escape a lot of those things. I know I could eat healthier. But I firmly believe a good cheeseburger is one of life's pleasures. The one thing that we know causes cancer, and that can be avoided, is smoking. That one's pretty easy. Unless, of course, you're a smoker trying to quit. Then it's not easy at all.

In my case, the cause seems to be mostly genetic. Colon cancer has been in my family for generations. When I was diagnosed the very first time, I asked my doctor if I needed to drastically change my lifestyle. He said no, the problem was in my genes. In some ways, that made things easier. I didn't have to ask myself and I couldn't ask myself the question: "What did I do to cause it?"

Now, I could have gotten tested earlier. But I really don't give that a second's thought, either. I didn't do it, so worrying about it now won't accomplish anything. One of the things cancer does is focus the mind. When you have the disease, that's pretty much all you think about, at least at the beginning. It doesn't matter where it came from, or how you got it. You have it. It's time to concentrate on the really important questions: How can I treat it? Can I live with it? What can I do to feel better? What kind of life should I be living? How can I comfort my loved ones? Those are the questions that matter.

Asking, "What did I do to cause this?" is natural. But my feeling is that you ask it once, realize there's no answer, and move on. That question sort of carries with it the sense that you did something wrong, that you screwed up somehow, that you brought this on yourself. Nothing could be farther from the truth. Cancer is not our fault. It's not punishment. It's not a judgment. It's just a disease. And some of us get it.

Leroy Sievers

5:53 AM ET | 03-27-2007 | permalink | comments (29) | e-mail post

Not Everything Can Be Fixed

The following is a commentary from Morning Edition, March 26, 2006:

When we were children and we got a cut or a scraped knee, or even worse, we were bleeding, we knew exactly what to do: run to our mothers. They would fix it. They would make it better. They would make it go away. Healing wouldn't be instantaneous, but we knew that we would be OK.

One of the shocks of becoming an adult is learning that not everything can be fixed. Not everything can be made better. Sometimes it won't be OK.

For anyone who has cancer, there is one moment that you can never forget. It's when the doctor tells you, "It's cancer." Now, the exact words may vary, but the impact is the same. Your heart begins to pound; your brain screams out in disbelief. Your hearing stops, too, but usually only after you hear the words that so often come next: "There's no cure."

And our first reaction is the same one we had so many years before when we were children: Fix it. Make it better. Make it go away. But sometimes that's not possible.

When John and Elizabeth Edwards announced to the world last week that her cancer had returned, so many of the phrases, so many of the words they repeated sounded so familiar to cancer patients everywhere. We've all heard them before.

"It's not curable, but it is treatable. It can be managed. It's a chronic disease, like diabetes. You can live with it." And all of that is the way that most doctors, and most patients, for that matter, approach cancer these days. It's not an immediate death sentence. It will change your life. It will bring pain, both physical and mental. It will affect everyone around you. But it may not kill you -- at least not right away.

With all of the new drugs, with all of the new treatments, doctors try to hold the cancer in place. They try to buy you time. Sure, everyone would like the tumors to shrink, or better yet, go away, but that's not what happens in most cases. But if chemo or radiation can buy you a couple of more months, or even weeks, that's success. Because when we really stop and think about it, we're not trying to just defeat the cancer, we're trying to postpone our own deaths.

John and Elizabeth Edwards put on a brave face. They were optimistic and upbeat. They said they were up for the fight. But I'm sure that they, too, were rocked by those words: "No cure." Their lives will never be the same after hearing that. Elizabeth Edwards' doctors may be able to manage her cancer. She may live for years. But she now knows what so many cancer patients know: that most likely, the disease will ultimately kill her.

And though we're all brave, though we fight like hell, though we carry each other and allow ourselves to be carried in the rough times, we're all honest with ourselves, too. We know that the one thing we want just isn't possible. We just want someone to fix it. To just make it go away. Along with everything else, cancer robs us of our innocence.

Leroy Sievers

4:46 PM ET | 03-25-2007 | permalink | comments (39) | e-mail post

A Difficult Road Ahead

I watched the press conference with John and Elizabeth Edwards yesterday. As I'm sure all of you know by now, Elizabeth's breast cancer has returned, this time in a rib. I had a whole range of reactions while I was watching. First of all, just on a personal level, it must have been painful and difficult to lay all her health issues out before the nation. We have talked about how difficult it can be sometimes to tell family and friends. Elizabeth Edwards told the nation.

So much of what she said was so familiar: The fear any time you have a new pain. The fear when a scan detects something "troubling." She used the diabetes metaphor that is becoming so common. Doctors are looking at cancer more and more as a chronic disease -- something people can live with for a longer period of time. She talked about being on some form of chemo for the rest of her life. That a "cure" was not possible. Those are painful things to hear and to repeat.

It's clear she has a difficult road ahead. Actually, I should have said, it's clear the whole family has a difficult road ahead. The fact that so many of us have already traveled on that road somehow made the press conference more painful to listen to. John and Elizabeth Edwards were both very positive. But they know -- and we know -- how tough it's going to be some days.

It's a very sad situation. My heart goes out to them. Yet another reminder of how cruel the beast can be.

Leroy Sievers

5:07 AM ET | 03-23-2007 | permalink | comments (43) | e-mail post

These Questions Shouldn't Be That Hard

I was at Starbucks the other day, and standing in line, I started to cough. Now, after the ablation procedures, after having three tumors burned to a crisp in my left lung, when I cough, it's not a pretty sound. I try not to do it in public, but I couldn't help it. The nice young woman behind the counter asked if I was sick, thinking, I'm sure, of the cold that seems to be going around. I just said, "Yes."

We've talked a lot about how to answer those questions: Are you sick? How are you? When you have cancer, they're not always the easiest questions to answer. The truth? The whole truth? Nothing but? Now, I don't think that I would ever have answered that young woman by saying, "Yes, I am sick -- stage IV colon cancer with mets to the brain, lungs, and spine." None of us would ever do that to a stranger. But it made me think about my current status.

Am I sick? In the short term, yes, I'm still recovering from the procedures. But do I have cancer? I'm pretty sure it's in my body somewhere, but again, I don't have any detectable tumors. Does that mean I'm not sick? Do I not have cancer anymore? I honestly don't know how to answer that. In my mind, I still have it. I still consider myself a cancer patient. I still live in cancer world.

But if all of the tumors are dead, as they appear to be, does that mean I don't have cancer? I guess so -- at least for the time being. But I'm having trouble thinking of myself as "cured." That doesn't feel right either. I think I've won the latest round, and we'll see how it goes from here.

These questions shouldn't be that hard. Before I had cancer, "How are you?" was just a throwaway line, a conversation starter. With cancer, it became a much more meaningful question, one without an easy answer. "Are you sick?" seems like the same sort of thing. That young woman was just being polite. But for the life of me, I don't really know what the answer is. Maybe I just need more caffeine.

Leroy Sievers

5:17 AM ET | 03-22-2007 | permalink | comments (30) | e-mail post

That's What This Is All About

The hour of the wolf. The hour of the hawk. I've heard it called both. It's that hour of the night when Death is on the hunt. I've always thought of it as about 3 in the morning on a very cold night. Of course, it doesn't really work that way.

We talk about beating cancer, defeating it, conquering it and so on as if that was an end in itself. But it's not. We're really talking about something else. We're talking about death. That's the real opponent here. We try to stop or stall cancer because it's trying to kill us.

JJ wrote in the other day to say — using another metaphor — that the elephant in the room isn't cancer, it's death. And that's true. The reason we care about cancer is that it is a killer. It cuts short our lives, often in a painful way, and it does it with plenty of notice so we're forced to think about it. A lot.

So all the chemo, all the radiation, the ablation, the new therapies — all of that is aimed at one thing: keeping us alive. Pushing back the day that death will come. When death is sudden and unexpected — an accident, for instance — there's no time to think about it. But cancer usually attacks very slowly. It will say, "In a month or a year or maybe five years, I'll get you." And that is both the blessing and the curse for cancer patients.

We are given time to think about our deaths, to think about our lives. It's painful to think of all the things that will be left undone if cancer has its way. But it's also an opportunity to rethink our lives and our way of living, to think about where we've been and to think about how we're going to live the days that we have left.

I don't know that it really matters whether we fight cancer or death. When Death looks at his watch, and the big hand is on the wolf, all we really want is for him to just pass us by. That's what this is all about.

Leroy Sievers

6:25 AM ET | 03-21-2007 | permalink | comments (30) | e-mail post

Too Quiet

It's a line that's used in almost every Western movie. I think there's some sort of Hollywood law that requires it. At night, one cowboy will look at another and say, "It's quiet — too quiet." Immediately, one of them will be struck by an arrow. You'd think they'd have learned not to say it. Maybe that's just how the stupid cowboys got weeded out.

A woman wrote in today to say that she's in a similar position to me. No apparent active tumors. And she said she's more anxious than ever. It's too quiet.

When I had tumors, actually, lots of them, I wasn't really anxious. We knew what the situation was and just had to deal with it. I knew where the tumors were; I'd seen pictures of most of them. So it was just a question of dealing with the whole situation. It was a time for chemo and radiation. There weren't too many gray areas. I had cancer. Period. Sure, there were uncertainties about how long I might live, but as I think back, the situation was pretty clear-cut.

We've talked a lot about the anxiety that comes whenever you're waiting for the results of the latest scans. Will the tumors have grown? Will there be new ones? But for those without detectable tumors or those who are in remission or NED (no evidence of disease), that anxiety can be even greater. Will it come back?

A lot of people who have apparently beaten the monster say they can never really relax. They're always waiting for the next scan or the one after that to bring back their old enemy. And what could be worse after thinking you've won but to hear those words: "It's back."

I have a brain and spine MRI in a few weeks. I'm sure when the time gets closer, I'll get more anxious. I'll worry that my respite from cancer may already be over, that there's something bad someplace new. It will be quiet, too quiet. But hopefully the results will be negative, and I'll be able to relax, laugh and make the joke that never seems to get old: "Yes, they did find a brain in there." And that will all be repeated each time I have new scans. The anxiety will be repeated, too. I fully expect that someday the beast will come back, but I'll deal with that when the time comes.

But at least I've learned one thing: Never ever say, "It's quiet — too quiet," out loud. That's just asking for trouble.

Leroy Sievers

6:17 AM ET | 03-20-2007 | permalink | comments (35) | e-mail post

Dealing with Survivor's Guilt

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

Talk to anyone who's been in combat and it's a pretty good bet they've felt it. In the immediate rush after the shooting stops, you can feel more alive than you ever have before. It's the sheer joy of having survived. Your senses are sharper; the air is crystal clear. It's only afterward that it sinks in: Not everyone makes it; not everyone survives. That's where "survivor's guilt" comes in.

In some ways, I feel like I've been in a fight that has lasted for a year and a half. Now the guns are silent, even if it's just for a short time. The Radio Frequency Ablation treatments killed the tumors in my lungs. I can say now that I have no active tumors in my body. At least none that are big enough to detect. To say that I am lucky is a huge understatement. I never thought I'd be in this position.

When someone is diagnosed with cancer, one of the first questions they usually wrestle with is, "Why me?" Why was I singled out? Why am I sick when others aren't? But it's not very long before we all realize that this is the wrong question. "Why not me?" is just as fair. There really are no answers to either question. "Why" isn't the point. We have cancer; we have to deal with it. We have to look ahead.

Now that I find myself in this position — of appearing for the moment to have beaten this thing — I find myself returning to that first question: Why me? Why was I so lucky? Why have I gotten a break, when so many others have not? Why can't we all survive?

I guess I do have some survivor's guilt. Though it's not guilt, really. It's more a feeling of deep sadness. Not for myself, but for all of you who haven't gotten good news, who are not going to beat this, even for a little while. There was no answer to, "Why me?" in the beginning. There's no answer now.

Don't get me wrong. I'm thrilled to be where I am. I don't know what's in my future. None of us do. But through this ordeal, we have all been walking the same road, shoulder to shoulder. We all faced the same fears, the same challenges, the same heartbreak. And we all learned lessons we couldn't learn any other way.

Now I feel as if I've stepped off that road. Maybe it's just to rest a little while before I start walking again. Or maybe my path will be a different one. I just know how hard all of you have fought, and how hard you fight every day. I just wish I could bring you to where I am now. You've earned that.

Leroy Sievers

6:34 AM ET | 03-19-2007 | permalink | comments (36) | e-mail post

The Little Things That Make it Easier

Spearmint gum. That's my secret. When the coughing spells or the nausea come on, I go for the gum, and it seems to work. I have it stashed all over: in my car, in jackets, all over the house so it will always be handy when I need it. I really don't think about it anymore; it's become habit. But when Bob wrote in, I thought that it would be worth it for us to talk about again:

"How did you all learn to work around the Oxaliplatin and Cisplatin cold sensitivity and neuropathy? How about that Erbitux rash — what worked to relieve it? How about nausea — what was the best treatment? I'm sure that there's a wealth of experience out there that can be shared."

We all learn little things that make it easier to get through our treatments. When I was on chemo, just taking the pills could make me sick. I found that drinking Sprite instead of water made it easier to get them down. Chocolate would also calm my stomach — that was a happy discovery. I had the intolerance of cold that comes from the chemo drug Oxaliplatin. I never found anything that would make that any easier. Same for the neuropathy, that tingling in your hands and feet. Anything make that easier to deal with?

These latest treatments have given me insomnia. Usually, I sleep like a rock. But these nights, I wake up about 4 a.m. and can't go back to sleep. I don't know if that's related to the treatments or my mental state or what. But I have realized that as bad as daytime TV is, there's absolutely nothing on in the middle of the night. There are a lot of infomercials. I wonder who they think is watching? People like me who can't sleep but are too groggy to turn off the TV? I haven't found anything that will help me sleep better. I'm hoping that at some point, I'll just be so exhausted that I'll get a full night's sleep.

I know that you all have found your own tricks for chemo, for radiation, for surgery. So let's share them. What do you do to get through the bad times? Let's help each other out here.

Leroy Sievers

5:47 AM ET | 03-16-2007 | permalink | comments (75) | e-mail post

Letting My Body Set the Pace

We all pretty much like instant gratification. Immediate results. We've all talked about how excruciating it is to wait for those new scan results. When I have new scans taken or new lab work done, I want the technicians to drop everything else and get my results. I know that's not going to happen, but that doesn't stop me from wanting it.

I think the same thing is true of healing. When I was on chemo, I was on a three-week cycle: two weeks on, one week off. As soon as I stopped taking the pills, I wanted to feel good. I wanted to feel like my old self. Well, of course that doesn't happen. It takes days for your body to recover. I'd usually get one or two days of feeling pretty good before it was time to start the next cycle.

And that's sort of where I am now. The RFA procedure apparently went well yesterday. I don't have any real pain today and haven't taken any pain medication. I'm tired — no, exhausted really — but that will pass. I still have the coughing spells, but those take a couple of weeks to go away. Now I know that, assuming all went well, I have no active tumors in my body — at least none that are big enough to show up on the scans. That's a big deal. A huge deal.

I'm having trouble being patient, allowing my body the time it's going to need to heal. I want to get back out and exercise, go hiking every day, lift weights, all of that. But I'm not ready yet. My body's pretty clear on that. I guess what I want is to turn the clock back, to feel and — let's be honest — look more like I did before I had to face the Beast. I don't know if that's possible. I know what I've put my body through. I read all of your accounts of what you all have had to suffer through. I don't know how well or how fast, our bodies will heal. For that matter, I don't know how long it will be before another tumor does show up. I'm going to try not to worry about that too much. That worry can be paralyzing.

No, I'm going to have to listen to my body and let it set the pace. After all, I haven't been very kind to it over the last year and a half. Drugs, surgery, radiation, and so on. I wouldn't blame my body for being a little upset with me. So much as I want that instant healing, I guess I'm going to have to take it slow. But, boy, that's hard.

Leroy Sievers

6:14 AM ET | 03-15-2007 | permalink | comments (23) | e-mail post

So Far, So Good?

Well, it's done. I had the third Radio Frequency Ablation procedure, and as far as we all know, the tumors are dead. Now, we won't know for sure for another three months or so when we do a new PET scan. But so far, it all looks good.

The tumor we got today was the smallest of the three. Maybe because of that, I feel pretty good. Or maybe that's just because the drugs haven't all worn off yet. There's a lot to think about now: how to help my body heal, what happens next, what about the next scans and so on. But I think there will be plenty of time for that.

For now, I'm trying to let it sink in that of the eight tumors doctors have found, none are apparently alive anymore. That's pretty amazing. The brain tumor was taken out with surgery and radiation. The two on my spine were apparently killed by radiation. Three in my lungs killed by RFA. And two others in my lungs have never shown any signs of life or growth, and are so small that we assume they're either dead, they're scar tissue or they never were tumors.

So as I sit writing this, all I feel that I can do is just shake my head in wonder, and fill my heart with gratitude. Those other questions? They can wait until tomorrow.

Leroy Sievers

6:03 AM ET | 03-14-2007 | permalink | comments (65) | e-mail post

Little Does the Tumor Know...

Universal Studios © 1960

I don't think there's a lot more to say right now. I'm off this morning for the last of the Radio Frequency Ablation procedures. I sort of like to think of this as a bad horror movie. That last tumor may know that something is wrong by now. Its two friends are dead. Little does it know that the big needle is coming for it very shortly. All we're missing is that music from the shower scene in Psycho.

Assuming all goes well, I'll be home this afternoon and will have a new blog for tomorrow. But after my collapsed lung last time, they may want to keep me in the hospital overnight, just to keep an eye on things. If that's the case, then there won't be a new blog tomorrow. I'm not worried. I've been through this before; I can get through it again if I have to.

So I just want to say thank you to all of you who have written in with notes of encouragement. Those all mean so much to me. I wish that this procedure, or something like it, could be as effective for all of you. I'll be in touch as soon as I can. In the meantime, thanks again. Today really is going to be a day unlike any other.

Leroy Sievers

6:28 AM ET | 03-13-2007 | permalink | comments (42) | e-mail post

A Very Important Day

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

Tomorrow is a big day. Probably the biggest day in the last year and a half for me. Tomorrow I will undergo the third and final — at least for now — Radio Frequency Ablation procedure. There's one last tumor still alive in my lung and this procedure should kill it. So when the drugs wear off and my head starts to clear in the recovery room, I should have... well, I'm not sure how to put it: No more tumors? NED — what the doctors call "No Evidence of Disease"?

I don't want to say I'll be cured, because I don't think that's right. As big a day as tomorrow will be, I know it's more than likely that the cancer will come back somehow, somewhere. But that's a worry for another day. Maybe I don't fear that as much as I used to, because I have new weapons for that day. Another tumor in my lungs? We can do the RFA again. In my spine? Attack it with radiation. And so on. Chemo is still on that list, too, but I have to admit I don't really think of that as a very effective tool any more. But that day may come, too.

I have a hard time looking too far into the future. It does take a while to recover from the RFA. Hopefully, I won't have another collapsed lung. I really don't want to go through that again. Even if that doesn't happen, it takes almost two weeks for the coughing to stop, for the pain to go away. And of course, at some point, I'll have to take the bandage off. That hurts — a lot.

Then I'll need to get to work rebuilding my body. Get my wind back. Start working out regularly again. Try to do many of the things that stopped abruptly back when the doctors told me I had tumors in my brain and lungs. I'm looking forward to that, but I know I have a long way to go before my body will be anything like it was before.

And I've thought a lot about what would happen if it all goes terribly wrong again. What if multiple tumors show up all of a sudden? Another brain tumor? Multiple brain tumors? Well, quite honestly, if that happens, I won't be much worse off than I've been this last year or so. There have been times that looked pretty bleak, and we got through them. I can do that again. So even if my tumor-free time is limited, it's all worth it. Because it will mean that, even for a short time, I have beaten this disease. The monster didn't get me this time.

But I really need to push those thoughts to the back of my mind, and concentrate on this next procedure. Because tomorrow is a very, very important day.

Leroy Sievers

6:07 AM ET | 03-12-2007 | permalink | comments (80) | e-mail post

This Is Where I Live Now

We all talk about how different it is to live in cancer world. While it may look like the other world — the regular world that we used to live in — it is astoundingly different. After a while, I think we tend to take it for granted. Our world is made up of medical machines that bombard our bodies in so many ways, of doctors and nurses, chemicals and radiation, tests and scans and more tests and more scans. Now we can talk about our disease, the stage and where it's metastasized. We throw around terms like "CEA" and "MRI" and "NED" and so on.

I usually don't think much about it, but today I've been talking with a number of friends, and their lives are pretty full — new jobs, new cities, new relationships. Their lives are really nothing like mine anymore. I guess it's actually the other way around: My life is nothing like theirs anymore.

Then I came back and was reading the posts that you all sent in. And everything seemed so familiar. Do I dare say "comfortable"? It's not just the medical terms that we all throw around. It's the emotions, the experiences, the fears and triumphs. This is where I live now.

And no matter what happens, if I stay disease-free for a while or the cancer comes back sooner or later, I don't think I will ever go back to my old world. It's just not possible. When we take that first step into cancer world, when we hear those words for the first time: "We found something." "There's a mass in your..." Those words open the gateway into the world of cancer. Usually we are so overcome by hearing those words, we don't realize that, in fact, that door only swings one way. Once you step through, there's no stepping back. Whether for good or ill, that's just the way it is.

Leroy Sievers

5:54 AM ET | 03- 9-2007 | permalink | comments (32) | e-mail post

There's No Age When It's Not Unfair

I have a friend who once told me that after he'd reached his late 50s, he didn't much care what happened. The kids would be grown, the career pretty much reached its conclusion and so on. In other words, my friend was saying at that point it would be OK to die. I think my friend is crazy.

What made me think about that was the number of e-mails we get from younger people — people in their 20s and 30s — who have been attacked by cancer. They have their entire lives ahead of them, and then cancer cruelly steps in. It seems so unfair.

There's no age when it's not unfair. I'm 51, and I'm certainly not ready to die. There are a lot of things I still want to do. I'm sure most people, whether they're 40 or 60 or 75, would say the same thing.

But a young child having cancer, or a young adult for that matter, does seem overly cruel. You can't help but think about the things they might miss, those milestones in life that so many of us have taken for granted. And it must be especially hard when friends are making plans, just setting out on the road that will take them to college, to new jobs and new lives, to know that one might not be able to follow.

I still stand by what I said earlier. I'm not ready to die. At the same time, when my cancer came at me again, I did finally come to peace with the process. After all, I feel that I have lived a decent life. But there is a big difference between coming to grips with your own death and giving up on life. I don't think any of us ever give up. Even when the time may come that we choose to end treatment, that's not giving up. That's making a choice.

Cancer has been called a thief and a murderer. It still makes me sad when it steals a childhood, or a life just beginning. That just seems to be too much.

Leroy Sievers

5:41 AM ET | 03- 8-2007 | permalink | comments (37) | e-mail post

Advice for the Doctors

I've often said that as a cancer patient, I have had to learn things that other people don't know. And we talk to each other a lot about what we know now that we didn't know before we were diagnosed. I guess to most people who don't have cancer, our experience is pretty alien. It has very little to do with their lives. That doesn't mean that they don't care, or that they're unsympathetic at all. Quite the contrary. But there is really no way for someone else to understand.

The other day, Dr. Krupali Tejura wrote in with this question:

"I am finishing my training in radiation oncology in 3-4 more months time. My question to you is: What advice do you have for me, as an up and coming cancer specialist? More specifically, what did you like/dislike about your physicians, what could we do to be better? I know everyone has differing sets of opinions on the matter, but I would appreciate any input."

So here's a chance for all of us to share some of that hard-won experience. My answer is very simple: Be honest, always. That's one of the things I value most about my doctors. They will look me in the eye and tell me the truth. I don't want anyone to try to soften the blow of bad news or to try to hide the truth in any way. Just let me know what's going on.

The other thing that I love about my doctors is that they will spend as much time as I need with me. I know they have other patients and other pressing demands on their time. But never has one of my doctors said, "Sorry, I have to go, no more time." They have always been willing to talk with me as long as I need them. That, too, is invaluable. I know that sometimes I must make them crazy with questions. I know that sometimes, especially when I'm dealing with bad news, I can keep asking the same questions over and over again, but they never point that out.

Dr. Tejura is asking for our help and our thoughts, so I open the question to all of you. Here's another chance for us to help.

Leroy Sievers

6:11 AM ET | 03- 7-2007 | permalink | comments (81) | e-mail post

Dealing with the Uncertainty and Loneliness

So many of you wrote in last week when I asked what else we should be talking about. I read all of the responses and took notes so I wouldn't forget any of the many great suggestions. I sat down today to write this piece, and looking at my notes, two words just jump off the page: uncertainty, and loneliness. Those two words, unfortunately, can really define the worst part of the cancer experience.

I think before we got cancer, a lot of us had the illusion that we had things under control. Oh sure, there were job issues and bills and all that, but all in all, we were coping pretty well. And then that sense of control is shattered, and I don't think it ever really comes back. It is replaced by uncertainty in almost everything. How long will we live? Will the treatments/chemo/radiation work? What will my next scans show? Will it spread? Will it come back? It seems that almost nothing is certain, except that our lives have been torn apart and tossed in the air.

How do we live with it? I think that after a while, you just sort of get used to the chaos. That doesn't mean that it ever gets easier to wait for those scan results. But you can't keep living at a fever pitch of uncertainty; you just can't keep that up. Once you realize that ? and it took me a while ? life with cancer becomes a little easier. Once you stop expecting certainty or control, then it becomes possible to roll with the punches. That uncertainty just becomes a part of our new lives, of the way we have to live in cancer world.

The loneliness is tougher. Even surrounded by friends and family who all want to help so badly, having cancer can be heartbreakingly lonely. We all go through the "why me?" stage. Why was I singled out? Why have I now become so different from anyone else? Who else could possibly understand what I'm going through?

But then we gradually realize that others are living the same life we are. They understand. Sometimes just knowing that they are there is enough, you don't even need to say anything. Sometimes it's enough to look each other in the eyes and just nod.

We also realize that the people around us still care, even if they can't really understand what we're going through, and that's enough, too. In those dark hours of the night, when we're left alone with our greatest fears, when the power of the disease seems strongest, it's important to remember that others are always with us, even if we don't even know them. That may be one of the gifts of cancer. The beast takes so much, but it does force us to realize every day that we are not alone, that we are following in the footsteps of those who went before us, that we are walking shoulder-to-shoulder with others, and that we are leading the way for those who unfortunately will have to follow us. On this path, no one is truly lonely.

Leroy Sievers

6:06 AM ET | 03- 6-2007 | permalink | comments (35) | e-mail post

Will I Be Someone Who Used to Have Cancer?

Most of you know me as someone with cancer. Google my name — and yes, I confess, I've done that — more often than not, it comes up linked to one other word: cancer. But what about all the other things I've been?

I've been a journalist virtually my entire adult life. I've also been a baker, a short-order cook, a chicken delivery boy. I've taught. I dabbled in the human rights world briefly. I tried and failed to write a book. All that seems dwarfed by the cancer.

You'll hear cancer patients say it over and over again: "I am not my disease." But this beast has a way of forcing everything else into the background, if not out of your life completely.

Now I find myself about to embark on another part of this strange journey. I have been undergoing a relatively new procedure called Radio Frequency Ablation. They stick a needle into your lung, your liver, wherever the tumor is. The needle actually pierces the tumor. Then they burn it out from the inside. Kill it. Something that people undergoing chemo can only dream of. I've seen the scans, seen the black holes where my tumors were.

I had three tumors in my lungs. We've done two of them. One more to go, and that will happen next week. There are no signs of new tumors in my latest scans. The tumors on my spine, which we attacked with radiation, haven't grown at all. The assumption is that they're dead, too. So when I undergo that last procedure, I should be free of any active tumors.

Obviously, this is great news. To really put it in perspective, just a couple of months ago, my doctors and I pretty much agreed it looked doubtful that I would survive the year. We thought I might not even make it through the summer. Now I sit here thinking that that last tumor doesn't know what's about to happen to it.

And when that's done, when the last tumor has been turned into ash, what am I then? Will I be somebody who used to have cancer? I think most cancer patients don't ever think it's really gone. It's just hiding, waiting to jump out and scare us when we least expect it. Will I be able to resume my old life? To rebuild my battered body into what it was before? I don't know. But I know this disease has changed me dramatically in so many ways. I am a different person. Hopefully a better person. You cannot go through an ordeal like this and not be profoundly affected.

If I'm cancer free, does that mean I'm not part of cancer world, the community in which I have found so much comfort and strength? I don't know the answers to any of these questions. I just know that once again I will be a stranger in a strange land. But I will still be someone whose life was changed in every way by the monster we call cancer.

Leroy Sievers

5:44 AM ET | 03- 5-2007 | permalink | comments (85) | e-mail post

The Next Step

I can't say thank you enough. All of you have been so great about sending me your strength when I was having a rough time, and then helping me to celebrate the good news about no new tumors. You all gathered around Ruth when she had her surgery, and waited anxiously. And you take care of each other, passing on individual words of encouragement to others who wrote in.

And I have to admit that I get tired of writing about myself. In some ways, I think the name of this site has become obsolete. It's not just MY cancer. It's OUR cancer. This is our site, our community, our struggles, our victories and defeats.

So as we go into the weekend, I want to ask all of you, what do you want to talk about? What questions do you have? For me, NPR or another member of the group? Is there an issue you want to raise? A favorite quote to share? Where shall we go next?

One of the great things about this group of people, beyond how we take care of each other, is that I don't think very many of us are shy. The floor is always open, but today I just want to emphasize that. What's the next step as we all walk down this path?

Leroy Sievers

5:46 AM ET | 03- 2-2007 | permalink | comments (81) | e-mail post

Good News and Other Uncharted Territory

"I've got nothing for you. There's nothing on the scans." Not what I was expecting to hear from my oncologist this afternoon. I had been bracing myself for bad news. Trying to steel myself for when he said something like, "So there's a new growth" or "Something showed up." But not today. Even though I've been off chemo for a couple of months now, no new tumors.

It had been a long day. It started with the normal bloodwork — no big deal, they draw a little blood and you move on. Next up was CT scans. My oncologist wanted to look for any new tumors that might have cropped up while we weren't watching. My other doctor needed to see if the collapsed lung had gone away.

The answer to that was yes, which meant it was time to take out the chest tube. The most painful part of the process — the most painful part of this whole ordeal — was taking the bandages off my chest. Nothing else came close. My doctor tried to be really careful, trying to decide if she should go quickly and just rip them off, or slowly. Either way, it was excruciating. When the chest tube came out, it was a little weird. It's actually a couple of inches long, so it does take a while for the doctors to pull it out of your chest. It hurts a little, but it's also just a very strange sensation.

And finally, it was that agonizing wait to see my oncologist. He and I were laughing later; neither of us could really remember a time when the news had been good. But this time it was. With an added bonus. I got to see the scans of my lungs. I could see the black holes where the tumors had been before they were burned out. That was pretty cool.

So now there's only one left, and it has its date with the needle in about two weeks. After that? Uncharted territory. I feel like I should celebrate more, but to be honest, I'm exhausted. I haven't really slept in the last week. What better way to celebrate could there be, than a good night's sleep?

Leroy Sievers

6:02 AM ET | 03- 1-2007 | permalink | comments (71) | e-mail post