March 31, 2008

What's the Best Gift for Someone with Cancer?

 
“Dark chocolate. Light chocolate. With nuts. With cremes. Cremes and nuts. Wafers. Cookies. Brownies. This has brought me to a place I never thought I'd reach, to say words I never thought I'd speak. Please, no more chocolate. ”
 
 

Karen wrote in to ask what might make a good gift for her friend who was just diagnosed with cancer. That got me thinking about all the gifts I've received over the years. Chocolate without end. Dark chocolate. Light chocolate. With nuts. With cremes. Cremes and nuts. Wafers. Cookies. Brownies.

This has brought me to a place I never thought I'd reach, to say words I never thought I'd speak. Please, no more chocolate. Unless, of course, it's really, really good.

Books, movies, DVDs, CDs, books on tape. I've been given a pretty good sampling of all the entertainment industry has produced. I have to admit that I haven't read/looked at/listened to a lot of it. My attention span is shorter these days. I find it harder to sit down and devote a couple of hours to something. Instead, I move from chair to bed, from one room to another, take laps around the house, all in search of a position that will let me find some comfort.

A fair number of stuffed animals. Some date back to my first bout with cancer in 2001. A mechanical robin that plays a truly grating version of Rockin' Robin. A stuffed groundhog that plays the song from Caddyshack. A signed picture, addressed to me, from Rene Russo. Yes, there's a story behind that one.

The calls and visits are gifts, too. There really is no better way to show that you care, that you are thinking of someone. Of course, sometimes a visit, no matter how well-intentioned, can be exhausting. You have to know when to leave, too.

But I've said this before, and so I will repeat myself. I think the best gift you can give someone with cancer is a little bit of normalcy.

Recently, a friend of mine came to visit. We talked about all sorts of things. Politics, gossip about ABC where we used to work, family stuff, and so on. We talked for a long time about everything but cancer. If it came up at all, it was only for a few seconds. That visit, that slice of life outside cancer world, was the best gift she could have given me. And I am grateful.

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March 28, 2008

The Elephant in the Room

 
“Sometimes I forget that I have a terminal disease, one that will cut short my life. I tend to think of my life as open-ended.”
 
 

It's as if they move the finish line just when you're getting close.

My doctor told me yesterday that I'm going to need a couple more days on that table. They've decreased the dosage of each treatment out of safety concerns, so that means a few more sessions to get the total dosage they want me to have.

It's not a big deal, really. It's just that when you are counting down the sessions, it's a little unsettling to have to change that.

As soon as I finish these sessions, I'll go into another round that will specifically target the danger areas. I'm not sure how may sessions that will involve. They're still working that out.

My doctor said something interesting. We were actually talking about everything but cancer, but eventually the elephant in the room had to be acknowledged. I said that my concern is that sooner or later, the cancer will compromise my spine and paralyze me. He said it's his goal to keep that from happening, at least for six months. Six months!!

Sometimes I forget that I have a terminal disease, one that will cut short my life. I tend to think of my life as open-ended. I think in terms of years. I guess it's valuable every now and then to get a reminder of what might be.

It's funny, there have been times during the last couple of years that I could feel death nosing around. Times that I knew I was on his "to do" list.

I don't feel that now.

I don't know what that means. But I hope it's a while before he turns his attention back to me.

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March 27, 2008

Travelers on the Same Road

 
“You make lots of passing friends in cancer world. I'll see the staff four more times and then, except for a random meeting in a hallway, I probably won't see them again.”
 
 

It's funny how quickly you can fall into a routine. I've had three radiation treatments so far, and we have it down to a science. No pun intended.

I know everyone there now. When I arrive, I go straight to the lockers, put on a gown, and go to the waiting room. They usually come for me a short time later.

When I go into the treatment room, the mold that holds my legs so I don't move is already on the table. I don't complain about the lack of padding any more. They know how I feel.

I do have another complaint, though. The gowns.

We all know the problems, the wardrobe malfunctions, that are too common with hospital gowns. But couldn't they just get some larger ones? I'm not the only big patient there. Just a couple of XL's, and we'd be happy.

Once I'm on the table, it all goes very quickly. Then they help me sit up, bring my walker back, and I'm outta there.

You make lots of passing friends in cancer world. I'll see the staff four more times and then, except for a random meeting in a hallway, I probably won't see them again.

Same with the other patients. They all become our social world for a few days, until we all move on.

We're all travelers on the same road. We just have different routes and schedules.

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March 26, 2008

Destroying the Village to Save It

 
“I remember early on, one of my doctors told me that chemo kills as many patients as the cancer. Those drugs are poison, after all.”
 
 

I've put my body through a lot these last couple of years, all in the hope of killing the cancer. I wonder sometimes if the cure isn't worse than, or at least as bad as, the disease.

I remember early on, one of my doctors told me that chemo kills as many patients as the cancer. Those drugs are poison, after all.

It reminds me of the famous quote from the Vietnam War. "We had to destroy the village to save it."

Well, maybe we're destroying my body to save it.

I started thinking about this after my radiation treatment. You see, I can feel the radiation. When they turn on the machine, it buzzes while it bombards my body with radiation. It makes the hair on my arms stand up.

It's a very strange sensation.

This can't be good. If the radiation is that powerful, what's it doing to my body?

I know that worrying about it is a luxury I can't afford right now. The radiation should buy me some time, keep the monster at bay a little while longer.

But when I look at those two-foot-thick lead doors on the treatment room, when I see the "danger" signs everywhere, when I hear that buzz and feel the radiation, I know it can't be good for me.

Except that not having it, would be even worse.

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March 25, 2008

Unexpected Side Effects

 
“Clearly this round of radiation is going to be tougher. And I have a second round coming up after this first one is finished. It may be a long couple of weeks.”
 
 

I didn't expect this.

The first time I had radiation, I skated through with no side effects. So I assumed this round would be the same.

I was wrong.

The good news is that my treatments only last about five minutes. It's still painful on that unpadded table, but five minutes is better than 20.

But the first wave of nausea hit me in the car on the way home. And there have been a couple more since then.

I'm getting some anti-nausea medicine. I hope that will help. But clearly this round of radiation is going to be tougher. And I have a second round coming up after this first one is finished. It may be a long couple of weeks.

Then I remember one thing. I don't have a choice. It's either radiation or near-certain paralysis when the tumors compromise my spine.

Like I said before, that's an easy choice. Don't need to stop and think about that one for very long. So I'll get through all the other procedures.

I wish that once, just once, things would get easier. But that's not the way cancer works.

I want to thank all of you for the wonderful notes about my mother. I'm sure she would appreciate them. I know I do.

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March 24, 2008

Cancer Takes Another Life

 
“My mom endured her share of the pain cancer can bring. Surgeries, radiation, countless procedures. Through it all, she was always more worried about me and how I was feeling.”
 
 

Cancer took another life this weekend. My mother, June Sievers, passed away on Saturday.

She had fought the disease for years, but in the end, it was just too much.

She died a few days before what would have been her 84th birthday. I know she must have been disappointed by one thing. My mother had a fierce will to live, and she was determined to outlive her own mother, also a cancer patient, who lived to be 94.

My mom endured her share of the pain cancer can bring. Surgeries, radiation, countless procedures. Through it all, she was always more worried about me and how I was feeling.

The only thing we really argued about was the guilt she felt for passing on the genetic predisposition for colon cancer. No matter how many times I told her that was ridiculous, wrong, just plain silly, she still thought that somehow my cancer was her fault.

It's impossible to sum up a life in so small a space. She loved spicy food, movies, mostly adventures or thrillers. And she loved to head out on the open road for a long drive. She loved our annual Halloween parties, coming one year dressed as "Leroy's Mom."

When I was young, I had a toy fire truck that actually sprayed water. She would make shoebox houses, set them on fire in the driveway, and let me put them out.

Some 40 years later, I wrote about that in the Nightline daily e-mail. She called me, worried that people might think she was a bad mother for letting me play with fire.

I thought long and hard about whether I should write anything in the blog about her. In the end, I didn't see how I could go without saying something about her life, and her death.

I think I probably learned how to fight this disease by watching her. What better gift could she have given me?

I will miss her.

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March 21, 2008

The New Triumphs

 
“Trying to cope with my cancer is the hardest thing I've ever done. Harder than any war. ”
 
 

Five years ago, I was in the Iraqi desert, an embedded journalist with the 3rd Infantry Division. None of us could have imagined back then that the war would go on for so many years, and that the costs would be so high.

That experience tested and challenged me.

Five years later, I'm in physical therapy. Standing for a few minutes without holding on to anything, getting up from a chair without help ... these are new triumphs. How things have changed.

Trying to cope with my cancer is the hardest thing I've ever done. Harder than any war. The toll on my body has been substantial, greater than any hardship I've endured.

And like those other major experiences, it has taught me things. I've learned more about who I am, more about strength and courage, more about life.

My career prepared me for that war, five years ago. I don't think anything can prepare you for cancer.

I look back on the war now and think how easy it was for me. These last couple of years? They've been tough.

But all these experiences have made me who I am. And for that, surprisingly enough, I'm grateful.

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March 20, 2008

Risky, But Worth It

 
“Your spine can only tolerate so much radiation. Since I've had it before, in order to give a high enough dose this time, we'll have to go above what is considered the normal tolerance level.”
 
 

So we have a plan.

I'll be starting radiation soon. My doctor is going to do general radiation over most of my spine, and then do very specific, targeted radiation where the tumors are threatening my spinal cord.

I've had radiation before and it wasn't a problem. The worst part is lying on an unpadded bench. For a back that's not long out of surgery, that's agony.

Of course, when you sign the consent form, the possible side effects they list are pretty scary: kidney failure, bowel obstruction, incontinence, vomiting, and so on.

Now it's true, those are rare. But they must have happened to someone some time.

There is a bigger and very real danger, though. Paralysis.

Your spine can only tolerate so much radiation. Since I've had it before, in order to give a high enough dose this time, we'll have to go above what is considered the normal tolerance level. That could mean I could end up paralyzed.

If the spine receives too much radiation, the paralysis usually isn't immediate. It can come months, or even years, later.

But we think that we'll still be at a pretty safe dosage level, that the chance of paralysis will still be very low.

And here's why it's worth the risk. There are tumors very close to my spinal cord. If we do nothing, if they are allowed to grow unchecked, I'll be paralyzed for sure.

So this was actually an easy decision.

I'll take risk over certainty any time.

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March 19, 2008

The Artifacts of My Cancer

 
“In one corner, there's a foam pad that one ambulance crew put underneath me to cushion the ride one time. We've kept it, although I'm not sure why.”
 
 

I've been sitting here, just looking around the room.

I noticed something, the room is full of normal stuff. Shelves filled with books and DVDs. There are lots of hats that I've collected over the years. On a top shelf, the helmets I wore in Desert Storm and the invasion of Iraq. And so on.

But when you look closely, you can see the artifacts of my cancer too. The breathing machines they give you in the hospital to strengthen your lungs. There are two of those sitting on top of some DVDs.

There are a bunch of little stuffed animals that people have given me as get well presents. In one corner, there's a foam pad that an ambulance crew put underneath me to cushion the ride one time. We've kept it, although I'm not sure why.

Next to the TV is the safety belt I was given in rehab. You wear it around your chest so someone else can grab it in case you start to fall. We still use that when I go up and down the stairs.

And there are cards and little trinkets here and there, all things that people have sent me during my illness.

So all in all, it's just a normal room. Except that it too has been touched by my cancer.

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March 18, 2008

Comfortable with Cancer?

 
“A year or two ago, this would have been a big deal, filled with angst. Now it's just the next step.”
 
 

It's funny how, as time has passed, I've become more comfortable with my cancer. Or at least more able to live with it.

Now that doesn't mean there aren't any crises anymore. That's certainly not true. I've just come through a six-month crisis.

But today and tomorrow we're going to work out what kind of radiation I'm going to have. A year or two ago, this would have been a big deal, filled with angst. Now it's just the next step.

Maybe I don't get as excited because I know that after this step, there will probably be another one, and maybe another after that.

I've had cancer for more than two and a half years now. And that's not counting the first round back in 2001.

I think back sometimes to my pre-cancer life, and it seems so simple. What did I worry about?

Or maybe I'm kidding myself. I just looked up and saw my walker, a reminder of what has happened. My life has been fundamentally changed by the cancer.

Maybe I've just gotten used to all the chaos.

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March 17, 2008

The Way Things Are Now

 
“I'm not going to wake up one day with everything back the way it used to be.”
 
 

I get frustrated sometimes. There are a lot of things, big and small, simple and complicated, that I just can't do.

Things I used to do without thinking, now require planning. I need to ask for help, need to ask someone else to do it for me, a hundred times a day.

If I drop something on the floor, I may not be able to get it. That's a small change.

I wonder if I'll ever drive again. My vision was compromised by the stroke during surgery, and the strength and control of my legs isn't good enough to drive safely. That's a big change.

It would be easy to get depressed, to dwell on what I've lost. At the same time, I do need to be honest with myself. This is the way things are now.

My old life is gone, and isn't going to come back. I need to accept what has happened and make the best of it.

That's not easy. But I have no choice.

I'm not going to wake up one day with everything back the way it used to be. That's not happening, no matter how hard I might wish for it.

So I will learn those new skills, plan my activities a little more carefully, accept that it's okay to ask for help.

My life is different now. But "different" is not the same as "over."

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March 14, 2008

A Familiar Pain

 
“This isn't pain from the site of my surgery, although I do have that. This isn't pain from the cancer attacking something in my abdomen. ”
 
 

I'm writing this while I lie down with ice packs on my stomach and chest.

I'm sore.

Really sore.

But it's not what you think.

This isn't pain from the site of my surgery, although I do have that. This isn't pain from the cancer attacking something in my abdomen. No, this is old-fashioned muscle pain. From working out.

My therapist gave me a complete workout to follow. Leg lifts. Stomach crunches. Knee exercises and exercises that target just about every major muscle group. And they seem to be working, if I can judge from the pain. She recommended ice packs after doing the program, so we'll see if they help.

This is a type of pain I haven't felt in a long time. I used to work out every day, and the pain you feel in your muscles after a good workout was pretty common. But I haven't been able to work out like that for the two and a half years I've been fighting
cancer. So, it's a familiar pain.

And you know what? It actually feels sort of good. Because it feel normal.

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March 13, 2008

Truth, But Not the Whole Truth

 
“I've never lied about how I feel, although there have been times when I haven't told the complete story. Not everyone really wants to hear that. ”
 
 

I'm hanging in.

Doing OK.

It has its moments, but I'm all right.

Those are all the answers I've given in recent days when people asked me how I am. And they're all true.

I've never lied about how I feel, although there have been times when I haven't told the complete story. Not everyone really wants to hear that. Not everyone can handle the whole story.

But they ask, and that's the main thing. They care.

It's easy to become totally self-absorbed when you have cancer. Your world narrows, because, let's face it, when you have cancer, it really does seem that it's all about you. Except that it's not, really.

I was reminded of that again when an old friend called to check up on me. It was a short conversation, but it was enough. Enough to remind me that I am not alone in this struggle.

All of your notes each day do the same thing. They tell me that no matter how bad things get, no matter how dark it may seem, we're all in this together.

As someone said, what happens to one of us, happens to all of us.

So, how am I?

I'm hanging in.

With a little help.

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March 12, 2008

Change in the Rearview Mirror

 
“That blue card hanging from the mirror. The symbol of the disabled person on it. That's about me.”
 
 

Sometimes it's the small things that really count.

Life with cancer is filled with big moments. That first diagnosis. The prognosis. Chemo. Surgery. Those are all major events, life-changing events.

But each day is filled with tiny events, too. Little things that let you know how much your life has changed.

I went to physical therapy yesterday and I'm still sore. My therapist gave me a whole exercise program to do at least once a day. That was sort of a medium event.

What I think I'll remember about yesterday, though, is that it was the first time we used the handicapped parking placard. My placard. That blue card hanging from the mirror. The symbol of the disabled person on it. That's about me.

A big thing? No, not at all. But it is a little reminder of how our lives can change. I never expected to hang one of those in my car. I never expected to be in this situation.

But I am.

Believe me, I'm certainly not embarrassed or ashamed. I need the advantages of handicapped parking. I'm just a little surprised, that's all.

Surprised at how this disease changes everything.

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March 11, 2008

Just Trying to Get Comfortable

 
“One spot will feel right for a while, then I'll get uncomfortable and move on to the next one.”
 
 

Sitting in the chair. Crossing one leg, then the other. Sitting on the bed, propped up with lots of pillows. Lying on the bed with fewer pillows. A couple of laps around the house with the walker, then start the cycle again.

I spend most of my day trying to find a comfortable position, one that will relieve some of the pain. One spot will feel right for a while, then I'll get uncomfortable and move on to the next one.

The laps with the walker are to strengthen and stretch out my legs. I have yet to find a chair, or a position, or a combination of the two that actually feels good -- and, allow me to whine a little, I'm really tired of being uncomfortable.

I'm trying a number of over-the-counter painkillers. They're marginally effective.

When I was in the hospital, I had a bad run with the drugs. I became disoriented for a day or two and couldn't answer a simple question like, "What year is it?" After that, I'm pretty much staying away from the heavy painkillers.

I've been sitting in the chair writing this, but now I'm pretty uncomfortable. So it's time to move on.

I'll try the bed next.

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March 10, 2008

A Sobering Situation

 
“Even if the radiation works, my cancer is very aggressive and it has clearly developed a taste for my spine.”
 
 

So my doctors have seen the pictures we took last week when I had the spinal tap. No surprise, there's still disease around my spine.

The surgeons worked on it during my last operation. They cleared it away from my spinal cord to buy me some time. But we have to do something about it.

It's on the stomach side of my spine. So it would be very hard to get to it surgically. I don't think I could handle another operation, anyway.

So radiation is the answer. We, actually they, will figure out the best approach this week. And then we'll get started.

It is a sobering situation, though. Even if the radiation works, my cancer is very aggressive and it has clearly developed a taste for my spine. If it comes back at some point after the radiation, there won't be a lot we can do.

We'll have used up all the options. Worst case, it pinches or pressures my spinal cord, I fall again, and this time I won't get up. Paralysis, incontinence, it's not a pretty picture.

Is that scenario certain? NO. Just likely.

So what can I do? Not much, I guess. Right now, I'm working on my walking. That's enough of a challenge.

I'll deal with the other stuff when it happens. I think that's all you can do.

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March 7, 2008

Relax or Else!!

 
“Lying on those thinly padded tables was pure agony. There has to be some way to give the patients a break and make the tables a little softer.”
 
 

That's the order I was given yesterday. Seems the way to avoid the killer headache is to lie down, head raised, and don't move. And so far, it seems to have worked.

But I do have one word for all the hospitals and the people who make those amazing machines ... padding.

My back is still numb from the surgery, so I didn't feel the anesthetic needle or the spinal tap needle when they went in. But lying on those thinly padded tables was pure agony. There has to be some way to give the patients a break and make the tables a little softer.

Yesterday's test was the first step in the next phase of our war against my cancer. The doctors will use the new pictures to plot out a radiation program aimed at the tumors that we know are still near my spine. The only question is what type of radiation to use.

I'm looking forward to this stuff getting zapped, even if it means more time on one of those thinly padded tables.

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March 6, 2008

What Are the Odds?

 
“If the fluid leaks, as I understand it, you can get a headache that is described as the worst thing ever. ”
 
 

I'll admit it. I'm nervous.

I'm having a procedure today. Because of all the metal in my back now, a regular MRI is pretty much useless. So I'll have a special kind of CT-scan. They'll inject dye into my spinal fluid. There's supposed to be minimal discomfort. You just have to lie still for several hours afterwards.

But ... if the fluid leaks, as I understand it, you can get a headache that is described as the worst thing ever. I guess this can happen to people who get a spinal tap.

I've talked to a couple of people who have had this headache, and they say it's beyond description.

Now chances are, it won't happen to me. But maybe all this stuff, this life in cancer world, makes us more pessimistic.

Only one chance in a thousand that something bad could happen. But that's not the way it's gone these last two and a half years. Sometimes I have been the one in that thousand.

So I'll be glad when this is over. I'm pretty sure it will all go well. I'm just a little nervous, in a way I never used to be.

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March 5, 2008

Just Another Hurdle

 
“I think it bothers some people that I don't get more excited. I'm not sure I understand it myself.”
 
 

Everyone has been so supportive as I go through this difficult time. The notes, the thoughts and prayers -- there's really no way I can adequately thank you all.

Now, with each small victory, like standing and walking, everyone has been excited for me. For some reason, I seem to be the least excited. I'm not sure why.

There's no question that I'm pleased with how far I've come. Farther than I thought was possible. I'm just not jump-up-and-down excited. And that's not because I know what would happen if I really did jump up and down!

My reaction seems to be much more businesslike. Okay, we crossed that hurdle, let's move on to the next one. And the next one after that.

I think it bothers some people that I don't get more excited. I'm not sure I understand it myself.

I know how long a road I have in front of me. I'll celebrate at some point. But right now I have work to do.

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March 4, 2008

Pushing the Limits

 
“I was exhausted at the end of the session. But now I know that I can do much more than I thought.”
 
 

"Can you stand without holding on to anything for two minutes?" That's what my new physical therapist asked me.

"Of course not," I thought. Doesn't she know what shape I'm in?

"Can you walk without holding on to anything? Stand up from a chair without holding on?"

NO and NO. It's hard enough with the walker.

But it turns out I was able to do all those things. Who knew?

I was exhausted at the end of the session. But now I know that I can do much more than I thought.

She was honest with me: I still have a long, long way to go. But there is some reason to believe that I can make significant progress.

For a man who was prepared to answer, "No, no, no," that's a lot.

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March 3, 2008

Learning Another Life

 
“But I didn't come home to my old life, just like that. I'm having to learn a new way to live, yet again.”
 
 

24 days.

That's how long I was in the hospital this time.

I only went outside two or three times during that whole period. I learned the rhythms of the hospitals and how to live my life by them.

I lost some weight. Let's be honest. They work miracles in hospitals. But the food? It's terrible.

Laurie brought in take-out, but it always seemed like it hurt the feelings of the people who delivered the hospital meals.

I learned which nurses could give injections painlessly, and which ones couldn't.

All in all, I learned and lived another life.

Now I'm home.

But I didn't come home to my old life, just like that. I'm having to learn a new way to live, yet again.

What's the easiest route with the walker? Which chairs are high enough to get in and out of with relative ease? Taking a shower has become an intricate and exhausting ballet.

But don't get me wrong.

No matter how difficult my new life at home may become, there's no place I'd rather be.

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Leroy Sievers

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