What Are Your Cancer Questions?

Before my first chemo treatment, I was given what we called "chemo school." It was a one-hour session that was supposed to tell us what to expect and answer our questions.

It did neither. But the idea was a good one.

When you're first diagnosed, you have a million questions. When you're starting radiation or facing surgery, a million more. And as I thought about it, I realized that through our own experiences, we've learned the answers to may of those questions.

We've been through it. We know what to expect.

So how do we put it all to use -- this experience and knowledge that we have so painfully acquired?

For those of you new to cancer world, or who are facing a new challenge ... how can we help?

Leroy Sievers

7:03 AM ET | 05-30-2008 | permalink | comments (78) | e-mail post

More Than My Disease

When I was first diagnosed, I think it's fair to say that my friends and loved ones were as scared, as disoriented, and as freaked out as I was.

The world had changed. I had become something different. A cancer patient.

A lot of time has passed since then. That frenzy, the panic, has pretty much gone away. I have been changed in profound ways. But in some ways I think I've returned to my old self, at least a tiny bit.

I wonder how my friends are doing with all this. Have things gone back to normal, at least a little? When we talk, even if we don't mention the cancer, are they still thinking about it? Do they ever forget? I hope so, for their sake and for mine.

I was talking to one of my best friends the other day and several times he said, "I shouldn't complain to you."

Nonsense. Of course he should. That's why I'm here. That's why I'm his friend.

And I try not to talk just about my cancer. I am more than my disease. Plus, I don't want to be boring.

Yes, I have terminal cancer. It's trying to kill me. I'm trying to stop it from doing that. Most days that seems to be enough to say about cancer.

The world is full of far more interesting things.

Leroy Sievers

8:01 AM ET | 05-29-2008 | permalink | comments (46) | e-mail post

Chronicles of Cancer

We're coming up on the two-year anniversary of this blog. Two and a half years after my diagnosis. I have to admit, that's a milestone I never really expected to reach.

There have been tough times. I remember thinking at one point that I needed to talk to the folks at NPR about who would take over the blog after I died. An event that seemed to be looming.

There were also those days when I was NED -- no evidence of disease. Happy days when I wondered if it still made sense for me to write the blog.

And there have been all the days in between. Good Days, bad days, just plain old regular days. Plain old regular days living with cancer that is. Because I think that's really what the blog has turned into. A record of those days that we have spent together, living with the disease.

There have been days of anger, optimism, days of sadness, nearly too unbearable to get through. There have been days of laughter, and of defiance. The disease is going to have to work to get me.

But what we have created is a record of our lives, a chronicle of how we have gotten through this together. We couldn't have done it alone, at least I couldn't have. This blog is a very personal thing to me. Each entry is a way for me to say, "Hey, I made it through another day. Let's see what tomorrow will be like."

Leroy Sievers

7:31 AM ET | 05-28-2008 | permalink | comments (82) | e-mail post

Memorial Day's True Meaning

The faces all have one thing in common. They all look normal. They look just like us.

I'm talking about the montage of photos of those killed in Iraq and Afghanistan. A number of newspapers ran the picture galleries yesterday for Memorial Day.

The soldiers pictured were mostly young. There were few women in this group. There were a few in their 40s, and even 50s. You wonder, what the heck were they doing over there?

Each picture represents a life cut short. It represents a family with an empty chair at the dining room table.

Memorial Day has been changed forever for these families. It's no longer a day off from work and an occasion for a picnic.

Now it truly is a day for remembering, and for sadness.

I wonder how many people stopped to look at those pictures in the papers. Do we hear what they are saying? Do we learn the lessons bought so dearly?

I hope so.

At the same time, it troubles me that these photos usually only show up on Memorial Day, tucked in between the ads for the weekend's sales.

I think we need to be reminded every day that this country has sent thousands of its best into harm's way. They were there yesterday while the rest of us enjoyed the holiday.

They are there today. They will be there tomorrow.

We cannot forget.

Leroy Sievers

7:05 AM ET | 05-27-2008 | permalink | comments (47) | e-mail post

The Gift of Time

How do we measure our lives?

In time? Days, weeks, months, years?

That takes us back to the "How long?" question. When you first learn that you have cancer, you want to know how much of a life you still have ahead of you. How you'll spend that time is something to think about later.

Once the shock has worn off -- actually, "worn down" may be a better way to put it, because I don't think it ever wears off completely -- you do start thinking about how you want to spend that time.

There were books I still wanted to read, movies I wanted to see. There were conversations to be had with good friends. There were friendships to rekindle with old friends who resurfaced.

And then there is the fight itself.

I still don't like the word "fight", but I haven't come up with a better one yet. Confronting our cancer, trying to defeat it -- that takes time, too.

Hours spent in machines, or waiting to go into machines. Days or weeks spent in the hospital for surgeries. And there is the time spent just thinking about what has happened to us. What this all means.

But the bottom line here is that I'm talking about how to spend time I never thought I'd have. Time that no one else thought I'd have. And that's a gift to be treasured.

Leroy Sievers

7:13 AM ET | 05-23-2008 | permalink | comments (50) | e-mail post

How Long?

There was really only one question that people were asking yesterday when the news about Ted Kennedy broke: How long?

There were plenty of doctors willing to go on TV to talk about his case, even though they weren't treating him.

Predictions were made. Prognoses given.

For anyone who's diagnosed, the first question they ask is "how long?" I know that was my first question to the doctor who had just rocked my world. And, that's the first question your loved ones want to ask too. How long will I have this person in my life?

You learn eventually that there is no answer to "how long?" Those predictions and prognoses don't mean anything. If I was diagnosed today, would I ask that same question?

Would "how long" be my first concern? As much as I've learned about cancer, as much as I've learned about myself, the answer is probably yes.

When a limit has been put on your life, when all of a sudden life seems more urgent, you want to know.

"How long?"

When I asked that the first time, the answer was about three months. Here I am, almost 30 months later. What's the lesson here?

I guess it's, what's most important is the living, not the preparing to die. I try to remind myself of that every day. No matter how much time I have left.

Leroy Sievers

7:03 AM ET | 05-22-2008 | permalink | comments (70) | e-mail post

Ted Kennedy, Too

It was all over the news immediately: Senator Ted Kennedy has a malignant brain tumor.

The TV doctors were out in force, with their plastic models of brains to show exactly where the tumor is. Anchors asked reporters in the field to assess the mood.

What kind of answers were they expecting?

My reaction, like so many people's, those who have cancer and those who don't, was one of sadness. Sadness for a family that has already seen so much tragedy.

But mostly, I feel sad for Ted Kennedy, the man.

The reports all said he was up and walking around, and I'm sure that's true. But I would also guess that he's very scared right now. Scared of a future that seems uncertain and difficult.

Surrounded by family and friends, these can be lonely hours. There will be lots of talk of treatment, surgery, radiation, chemotherapy. And I think there will be private doubt and public hope.

I just want to add my own hopes and support. I hope that the family members find strength in each other. I hope that fear does not stay in the room too long. And for Ted Kennedy, the man, I hope he finds the strength that will bring him peace.

And for all those who were diagnosed in hospitals all over the country today, I send you the same wishes.

Leroy Sievers

7:03 AM ET | 05-21-2008 | permalink | comments (71) | e-mail post

You Can't Have Cancer Alone

I can't tell you how sad it makes me when people write in to say that their husband, wife, boyfriend, or whoever just can't handle it, just can't support them through their cancer.

Getting cancer is a lonely event. Before you know better, you think no one can help. You think you're in this all by yourself. The only people who are really as scared as you are, are your significant others. Your caregivers. The people who will take care of you.

Let's face it, cancer is an uncharted road. Who knows where it will take you? But the one certainty is that we can't get through it alone. We need others, and they need us.

They need us to try to make sense of what's happening. They need us to tell them it will all be OK, even when we know that may not be true. They need us to be us. That's the most reassuring thing we can do.

And of course we need them in all the ways, big and small, that get us through the day.

Maybe this is obvious. But I worry that there are still too many who hide their disease. Too many who walk away from their sick loved ones.

We have many options when it comes to fighting our disease. Going it alone is not one of them.

Leroy Sievers

7:05 AM ET | 05-20-2008 | permalink | comments (77) | e-mail post

Does TV Get Cancer Right?

It catches my ear every time.

Cancer does appear on TV fairly often now. Not always where you'd expect it.
A recent Law and Order rerun or Battlestar Gallactica. All the medical shows, of course.

Sometimes it's a major plot point, sometimes a character just happens to get cancer. Those are the ones that are the most realistic, I think.

Cancer is just something that happens to some people. It happened to us.
It turns the world upside down, shakes it hard, and then looks to see what's left.

Like all things, sometimes TV gets it right, sometimes it's totally wrong.

But I think it's a good thing that the issue of cancer appears at all. Not that many years ago, I'm sure, it never came up.

Brian's Song, a movie about Brian Piccolo, the Chicago Bears player who got cancer, is the first one I really remember. People just didn't talk about it.

Let's face it, there are a lot of days that I don't want to talk about it much, either. But ignoring it won't make it go away, unfortunately.

I can't really describe the feeling I get when a TV show deals with cancer, except that I think, "They're talking about me."

And, somehow, I think that's a positive thing.

Leroy Sievers

7:05 AM ET | 05-19-2008 | permalink | comments (42) | e-mail post

Holding Out Hope

I want to get better.

I don't think about that a lot. I don't let myself. I spend more time thinking about living with cancer, having the best life I can under the circumstances. And don't get me wrong, I'm a realist. I'm honest with myself. I know what's happening to me, and what's likely to happen in the future.

But I still want to get better.

A tiny part of me still holds on to the very thin hope that somehow I can overcome this. I'm not looking for a cure. I know better than that. But I'd love to just have a normal life.

My old normal, not cancer normal. Just for a little while.

Am I kidding myself? Probably.

The chances of the cancer going away, for any length of time, are pretty much zero. But that doesn't mean I have to give up all my hope. You never know what might happen.

Actually, cancer patients pretty much do know what will happen. When we're given that first prognosis, we learn to ignore it. And the next one, too.

But the overall theme is pretty clear. The end result isn't really in doubt.

Still, I'm holding onto that hope.

Maybe this is just my way of being stubborn.

Leroy Sievers

7:14 AM ET | 05-16-2008 | permalink | comments (71) | e-mail post

Been There, Done That

My time off may be over. The scheduling folks at Hopkins are trying to find a day when I can have a CT scan, blood work and a brain MRI. Oh yeah, there's also a 15 minute drug infusion that I need to get as well.

It will be a busy day. I have to admit that I have gotten used to time off from all that. It's been a while since anyone had to stab me with a needle.

Now, there are a couple of things that I'm not going to do. I'm not having another spinal tap any time soon. The risks just seem to outweigh the benefits. An MRI on my spine would be a waste of time, given all the metal that's there now. They wouldn't be able to see anything.

But let's say we do see something troubling. Then what? I don't have a lot of options.

We've pretty much used up radiation. Chemo really isn't an option for me. I joke with my doctors that I've already had just about every procedure there is, but that's not too far from the truth.

So I'm left with that troubling question. If we find something, and I think the chances are good that we will, then what? I hope my doctors may have some new ideas, cause I sure don't.

Leroy Sievers

7:10 AM ET | 05-15-2008 | permalink | comments (57) | e-mail post

Can I Get Fries With That?

Of all of the things I ever thought I'd have to worry about, it never occurred to me that "Am I eating enough?"would appear on the list.

I've never had a problem eating my fill. I even came to sorta like the MRE's we ate in the desert in Iraq. The jalapeno cheese spread was a personal favorite. I've been put on steroids twice as part of my cancer treatment, and both times I ate everything in sight.

The only time I ever seriously dieted was when I was wrestling in high school. In order to make my weight class, I ate one meal a week. Literally. Thursday dinner. One night my parents found me sleepwalking in the kitchen, pulling cans out of the cupboards. After that I was terrified that I would eat but not know it.

I've always been a big eater. I'm a two double-double cheeseburger guy at In-N-Out. For those of you who don't know, that's the best burger around. So I was a little surprised the other day when a friend came to visit and he said he thought I still looked skinny.

Ordinarily, I'd take that as a compliment, but my doctors are concerned that I'm really not eating enough. The cancer can do that, take away your appetite. So what should I do? I've started to drink milkshakes and I try to eat a few more bites even when I'm full.

This really is something I need to take seriously, so, yes, I will have fries with that.

Leroy Sievers

7:42 AM ET | 05-14-2008 | permalink | comments (66) | e-mail post

Beyond Forgetting

Katy wrote in yesterday with a great question. She asked if I ever forget that I have stage IV cancer.

For a few brief moments every day, I think that I do forget. A good movie, a good book or meal -- those can make me forget. But it always comes back. The pain or discomfort is a nasty reminder that all is not well inside my body. That rarely goes away.

This doesn't mean the cancer has won. It hasn't, at least not yet. I remember that I have cancer in the same way I remember that I had back surgery not too long ago. But that's not all I remember. I remember that I am 52 and have lived a full life. I remember that I am still shocked that I am 52.

I remember the people who are walking this road with me. I remember the things they have taught me. I try to remember to still laugh at things, because the world is still a pretty funny place.

To get back to Katy's question, except for a few moments each day, I never really forget that I have cancer. It's part of my life now, part of who I am.

I can live with that. I have learned so much, been given so much. To forget that I have cancer would be to forget part of who I am.

Leroy Sievers

7:03 AM ET | 05-13-2008 | permalink | comments (40) | e-mail post

Whose Move Is It?

What happens now? I guess the next thing on the agenda is to figure out what the next thing on the agenda is.

Most likely we'll do what we always do when there's no obvious course of action. We take more scans. Of course, in my case, after all the surgeries and the radiation, new scans won't show much. My body may keep some of its secrets.

I've been pretty aggressive through all this, attacking the cancer whenever and wherever we can. It seems strange to think that we may slow down a little, that we may have to slow down until it becomes clear what is happening. I guess that means letting the cancer make the next move.

I'm not wild about that. I like keeping the disease off balance. I like to make those tumors worry about what's coming next.

But let's be serious. We talk a lot about living with cancer. I think that's the stage I'm going into right now. I'm going to have to live with my cancer. That may be a little nerve wracking, wondering what the cancer is doing, wondering what each random pain might mean. Waiting for new symptoms to appear.

But until that happens, until we see a new target, I guess that will be the plan. I'm going to have to learn to be patient.

Leroy Sievers

7:05 AM ET | 05-12-2008 | permalink | comments (42) | e-mail post

One Case Among Many

There's one cancer case that concerns me more than any other. My own, of course. That's pretty obvious. But I continue to wonder how doctors and nurses are able to handle so many cases when the outcomes are negative. How do they come to work day after day, knowing that they are going to lose most, if not all, of their patients?

I have asked many of them how they do it, and they all have different answers. But I still don't understand.

Over the last couple of years that I've been treated, I've become close friends with some of my doctors and nurses. We get together socially sometimes. We don't talk about cancer too much, but it's inevitable that it will come up. I wonder if, on those occasions, they ever forget that I am a stage 4 cancer patient, and that most likely the cancer will kill me.

At the same time, I wonder if any of my other friends ever forget it. Probably not. Still, it must be incredibly difficult for them emotionally. All I can say is, Thank God they are able to do it. Because if they couldn't, we wouldn't be able to fight this by ourselves.

I hope everyone in cancer world has a good weekend. We all deserve it.

Leroy Sievers

7:05 AM ET | 05- 9-2008 | permalink | comments (53) | e-mail post

A Full-Time Job

I am reminded every day that we have built a community of support, and also a community of wisdom. All the comments about depression gave me something to think about.

A number of you talked about the difference between depression and sadness. I think I would add fatigue to that mix as well. I think it's not so much that I'm depressed, it's that I'm worn down.

Being a cancer patient is hard work. And you're on the job 24/7. There are no breaks. You don't get weekends or holidays off. If you don't feel it physically, you live with it mentally. It can be unrelenting. I think that's what I've been feeling.

Boxers get that break between rounds. Football players can catch their breath in the huddle. Sometimes those few seconds can make all the difference in the world, can mean the difference between victory and defeat. I just need a time-out.

Except there are no time-outs in this game. Somewhere deep down in yourself, you have to try to find the strength to just keep going. Sometimes I find it, sometimes I don't. And if you don't find it one day, maybe it will be there the next. But it's hard. Probably the hardest thing I have ever had to do.

Leroy Sievers

7:14 AM ET | 05- 8-2008 | permalink | comments (62) | e-mail post

How Do You Deal with Depression?

Laurie asked me if I was depressed. And I answered, "Yes." Sometimes this all gets to me. It wears me down. I get tired of feeling uncomfortable. I get tired of the pain. I get frustrated that I can't just move around the way I used to. So, yeah, I get depressed.

I don't really know how to break out of it. I'm not anxious to take any new medication. What would make me feel better would be feeling better. If just one of the side effects went away, even for a short time, that would help tremendously.

In the meantime, I think all I can do is keep fighting. But I'm open to suggestions. What do you all do when depression raises its head? How do you all fight it?

Leroy Sievers

7:20 AM ET | 05- 7-2008 | permalink | comments (159) | e-mail post

For Now, Ignorance Is Bliss

I wonder what's going on inside me. It's been a couple of weeks since we finished the radiation. Am I cancer-free around my spine? Was the radiation successful in sterilizing that area? Or did some cancer survive, and is it growing as I write this? There's really no way to know, at least not yet. After radiation, you have to wait a while before scans will be of any use.

Sort of forgotten in all the craziness of the last few months are my lungs. Last time we looked, there were new small nodules that are most likely cancer. They were too tiny to do anything about. They were too tiny even to worry about. But that was a while ago. Have they gotten bigger? Have they multiplied? We'll have to take a look pretty soon.

I guess I've been living under the umbrella of "ignorance is bliss." I needed a break. So even though I know that the Beast is hiding somewhere inside me, I haven't had to confront it directly. That day will come soon enough.

But in the meantime, I'll try not to think about any new cancer. Who knows? If I ignore it, maybe it will just go away.

Leroy Sievers

7:33 AM ET | 05- 6-2008 | permalink | comments (33) | e-mail post

Pins and Needles

Neuropathy. That's the official name for it. It's that tingling in your feet or hands, and the bad part is, it may not go away. Neuropathy is actually a pretty common side effect from chemo. I got it in my hands and feet from the drugs. Luckily though, after I finished my chemo the tingling did go away.

Well it's certainly back now. I've had it in my lower legs and feet since my last surgery. I guess the best way for me to describe the sensation is that it's like your feet are constantly falling asleep. It moves around too, from feet to ankle to calf. There's really not a lot you can do about it, other than grit your teeth and try to ignore it. That only works sometimes.

It may go away, or it may be permanent, we just don't know. The only way we'll find out, I guess, is if I wake up one day and it's gone. In the meantime, like I said, I just have to put up with it. It's not really painful, it's a different kind of sensation. It can make it a little difficult to walk. Did I say it was annoying? That's probably the best description.

For all of the high-tech miracles that make up modern medicine, there's still a lot left up to hope. We do what we can and hope for the best. So that's what I do each day. I hope that today's the day the tingling will stop.

Leroy Sievers

7:45 AM ET | 05- 5-2008 | permalink | comments (57) | e-mail post

Our Cancer

You all are amazing. The responses to the "finish this sentence" blog just blew me away. I was at physical therapy today and my therapist asked me what I got out of all your responses. It was a great question, and I've been thinking about it all day.

My first response was that I didn't do it for me. I write about myself every day. My feelings, my pain, my thoughts, my cancer. Key word in that sentence is "my."

I wanted to break that up, if only for a day. I wanted to encourage all of you to talk about your feelings, your struggles, your pain, your cancer. Key word is "your." And you responded as you always do, with eloquence and wisdom and humility.

Your notes reminded me again of just how much knowledge we all have gained, although at a very high price. But now I think I know how to answer my therapist. What did I get out of it? I was reminded that no matter what happens, no matter how tough things may get, I am not alone. We are traveling this road together.

Leroy Sievers

7:03 AM ET | 05- 2-2008 | permalink | comments (49) | e-mail post

Life Goes On Around Us

Today hasn't been an easy day. I've had a fair amount of pain. And nothing I do brings much relief. I guess it's just one of those days. When you are this uncomfortable, you really can't concentrate very well. It's hard to think about anything besides the discomfort. So I try to keep moving, from the bed to my favorite chair and back. I nap. And I do try to think of other things.

None of that seems to be working today. So I'm sitting here at my computer feeling a little sorry for myself. But as I sit here, I can hear one bird singing outside. I have no idea what kind it is. But there's something about its song that makes me feel better. I know it's simplistic, maybe even a little corny, but sometimes that's all it takes.

It hasn't made the pain and discomfort go away. That would be a miracle. But it's a reminder that no matter what's going on with the disease, life goes on around us. That bird has stopped singing now, it may have flown away. But for a couple of minutes, it made me smile. And on a day like this, that's invaluable.

Leroy Sievers

7:14 AM ET | 05- 1-2008 | permalink | comments (58) | e-mail post