Ice Cream And My Jeep

"Cookies and Cream." That seems to be my favorite right now.

It's funny how big a part food plays in all of this. Laurie wrote yesterday about having a donut. For me, having a bowl of ice cream is a big deal.

There's just something about treating yourself that makes things better.

It doesn't really matter what you have. Ice cream, pastry, cookies, whatever. Just something sweet, something you're not supposed to have. Something tasty.

On another note, we got rid of my Jeep today. I hadn't driven it in more than six months. It was a stick shift, so driving it was out of the question. I knew it had to go, but it's still another sign of how the cancer continues to change my life.

Revving the engine was a lot of fun.

I'll miss it.

7:00 AM ET | 07-31-2008 | permalink | comments (84) | e-mail post

Sometimes, You Do What's Wrong

Every once in a while, you have to break the rules.

Every once in a while, it's obvious what you have to do.

Every once in a while, you just have to break down ... and do what you know is wrong. That's what Laurie did yesterday:

I've hit a new low in Leroy's struggle with cancer.

I ate a donut.

I know that sounds funny, but I'm not a donut person. The donut screams, "This fight has taken a turn in the road."

It's the cancer that is pushing back now. If it's not the disease itself, it's the effects of the disease that are causing pain and discomfort.

I used to be able to ease that pain ... but not now.

So I guess we've been through the "easy" part of this experience ... it's going to get hard from here on out.

All you donut makers out there, you've been warned.

-- Laurie

7:00 AM ET | 07-30-2008 | permalink | comments (128) | e-mail post

Holding On To A Bit Of Normalcy

I'm clean. That may not seem like a big deal, but it is.

Cleaning up in the morning is a major engineering feat. It involves lots of towels. Face clothes, brushes, combs, you name it. And shaving? That's an even bigger deal.

But when everything is cleaned up, the puddles mopped up, I look like a regular person. At least, that's what everyone says.

And maybe holding on to that, holding on to that bit of normalcy, is what's important.

Maybe the longer we can look the way we used to, act the way we used to, be the way we used to, the longer we keep that Beast at bay.

7:00 AM ET | 07-29-2008 | permalink | comments (63) | e-mail post

Working Toward A System

So we're getting things down to a system. Maybe not an easy system, but one that seems to work.

I'm not an easy patient. I admit that I look around for a short-cut, some way to cut out part of the work.

In the end, I usually give in and do what I have to do. But I don't make it easy.

Cleaning up each morning isn't easy. It has to be done. And that's the system I'm talking about. Old clothes off, fresh clothes on. Hygiene, hair, trying to take care of things the way I used to do it.

I couldn't do any of that without Laurie's help -- something I hope she realizes every day.

I have a friend who comes over to help us as well. He's strong enough to just lift me up when I need help. That's incredibly valuable.

So, all in all, this seems to be working.

I'm pretty lucky.

7:00 AM ET | 07-28-2008 | permalink | comments (58) | e-mail post

It's Not All About Me

Alice comes to the house four times a week now. She helps me clean up and get ready for the day.

She said something today, in passing, that stopped me cold.

She's faced cancer three time already, herself. And so has just about everyone else in her family.

Here I thought it was all about me. It's not.

She's gone through chemo, radiation -- the usual. None of it easy, none of it pleasant. But she got through it, and now she takes care of me.

It's so easy to get wrapped up in our own problems. So easy to just focus on our disease.

Alice reminds me every morning that the disease attacks so many of us. Too many of us.

All we can do is keep fighting.

7:00 AM ET | 07-25-2008 | permalink | comments (83) | e-mail post

A Break from Reality

People are very nice about asking what we need. What can they get us? DVD's, books, magazines.

All kinds of food have been offered, from sweets to the hottest hot sauces.

We appreciate it all, but what I really need is rest. I need a break. I just need this whole cancer thing to go away for a little while. An hour, two hours, whatever.

Problem is, I know that's not going to happen.

But I can still pretend. I can send my mind off to other places. Places where the cancer hasn't intruded.

I've talked about this before. I can send my thoughts to places where cancer is something that happens to other people.

So that's what I do. For that hour or two I believe this hasn't happened to me. It works for a while.

Reality will be back soon enough

7:00 AM ET | 07-24-2008 | permalink | comments (67) | e-mail post

Putting Myself in the Hands of Others

I wonder how they explain it to the home health aides they send over to the house.

He's big, he's heavy, you're going to have to pick him up.

Well, I'm not as heavy as I used to be. We've developed something of a system now to get me up and off the bed.

Go on three. That's the key.

Except that sometimes one of us goes on two. That makes things interesting.

Luckily, everyone who comes over is strong enough to hold me.

So I put myself in the hands of others. Not something I'm used to doing. But it's something I have to do now. Something I have to do every day.

Will I ever get used to doing it? I'm not sure, but in the meantime ... "We'll go on three."

One, Two. Three.

7:00 AM ET | 07-23-2008 | permalink | comments (79) | e-mail post

No Power Over Us

I think it's time to draw a line in the sand. Show those tumors who's boss. Take control of all this.

Are there any clichés I've missed?

Let's take today off. Let's not think about cancer. Let's not talk about cancer. I'm not going to write about cancer.

Let's make those tumors wonder what's going on.

Let's show them that they don't have all the power over our lives.

Let's not talk about cancer.

I'm not going to write about cancer.

Let's make those tumors wonder what's going on?

Let's show them that they don't have all the power over our lives.

7:00 AM ET | 07-22-2008 | permalink | comments (100) | e-mail post

A Moment in A Different World

It was a time for "old times" this weekend.

Someone I worked with more than twenty years ago came to visit. Friends I worked with a couple of years ago came by, too.

It didn't take us long to get back into all the old stories, all the old memories. And we agreed on most things. I guess our memories held up better than we had expected.

And the nice thing was, we didn't really talk about cancer.

Oh, we did, a little, but it wasn't the center of the conversation.

I know the reason my friend came to visit is that she knows I may not have a lot of time left. But the day wasn't like that. It wasn't morbid at all.

We talked about all the crazy things we did, all the things we never should have gotten away with.

We talked about a different world.

And for a few hours, it was great.

7:54 AM ET | 07-21-2008 | permalink | comments (86) | e-mail post

What Happens to This Blog?

There's a very touchy subject that we're going to have to deal with eventually.

We can't ignore it forever.

What would we do with the blog when I can't do it any longer?

Should we find someone else to write it each day?

That could be a little difficult. I can see the job posting now. WANTED. BLOGGER. MUST HAVE CANCER.

I don't think we could do that.

On the other hand, could the blog be written by someone who doesn't have cancer? I don't think so.

Unfortunately, I think these pages need to be filled by someone who has looked the beast in the eye.

I may be able to go on writing the blog every day for years or at least months. I don't know.

I have no idea how I will ever be able to say farewell to all of you if and when that time comes, so I'm not going to think about that at all.

7:00 AM ET | 07-18-2008 | permalink | comments (199) | e-mail post

Wisdom Gleaned from Cable TV

The days can pass pretty slowly.

I'm not sure that there's anything I could do to speed them up. Daytime TV remains something of a desert -- where bad TV shows go to die.

Although I have to admit, I have gotten hooked on the Tour de France, or at least parts of it. I don't think I understand all the strategy, but it's still fun to watch.

Beyond that, I try to take care of my body. I try to listen to it, see what it's trying to tell me. One of the easiest messages to understand is "OW." "You're in pain." That one I get.

When the pain gets too strong, and the medicine doesn't seem to be working, I imagine that I am someplace else where I'm not in pain. That works sometimes. It allows me to escape for a while.

The movie, The Departed seems to be on cable nonstop. Don't get me wrong, it's a brilliant movie, but I think I can recite it from memory by now. In one of the scenes, Jack Nicholson is walking out of a bar and he asks a customer how his mother is doing.

"She's on the way out" the man replies.

"We all are," is Nicholson's answer. "Act accordingly."

I'm not sure why that line haunts me the way it does. It seems cold and tender at the same time. What does "act accordingly" mean?

Maybe I need to watch the movie a few more times and I'll figure it out.

7:00 AM ET | 07-17-2008 | permalink | comments (86) | e-mail post

Stumped Without an Easy Answer

I want to thank you all for your suggestions and guidance about hospice.

But I still haven't decided. Today was the first day that my home-care nurse came to help. She had worked in hospice for years, so I asked her what she thought. Her answer wasn't surprising. She said that hospice is great for managing pain, but that it really is the process of managing the end of life, and no one really knows when the time is right to begin the process.

I certainly don't know.

My doctor's don't know. They're leaning towards starting it sooner than later, but that's not definitive.

So once again, I find myself stumped. Looking for an easy answer, when there isn't one.

I guess that for today, the answer is still no. Not yet.

As the Magic 8-Ball might say, "answer hazy, ask again later."

7:00 AM ET | 07-16-2008 | permalink | comments (109) | e-mail post

Is It Time?

Hospice care. Is it time? That's what we're wrestling with right now.

Is this the time to start? Or do we wait a little, let a little more time run out

It's a hard decision.

Will I be more comfortable under the care of the hospice nurses? After all, their whole program is geared to making the patient more comfortable and managing pain.

A little more pain management would be welcome right now. On the other hand, I'm just not sure I'm ready.

I think it's a big step, in some ways, signaling that we're getting ready for the end.

What's the right way to go? I don't know.

This time I'm stumped.

8:18 AM ET | 07-15-2008 | permalink | comments (255) | e-mail post

Wishing Things Were Different

We've been living with cancer for a long time now, but that doesn't mean we're comfortable with it.

There are those days when we wish with all our hearts that things were different. That things could be the way they were.

This was one of those days for Laurie.

I want him back.

I want to hear that big, deep, laugh again.

I want to hear him planning for a trip to some God-forsaken region and actually being excited about going.

I want to see him jet-skiing to a Maui sunset with a look on his face
like he's found the perfect place.

I want to see him snoozing on the couch on a Saturday afternoon.

I want to be with him, step by step, hurrying to a Broadway performance of Savion Glover, and wishing that just once, he could tap like that.

I want to see him in one of his favorite Hawaiian shirts, sitting outside, laughing, and sharing a good time eating Mexican food.

I want to walk with him and our good friend Ted on the C&O Canal and gossip and talk headlines and sports.

I want to look at him and laugh and love the costume he's created for the annual "best story of the year" Halloween party.

I want to see him sitting on the lanai, after a day at the pool in Maui, sipping an ice cold Mai Tai, watching the golfers below cheat when they thought no one was looking. (We were.)

I want him to enjoy that life again.

I want him back.

7:00 AM ET | 07-14-2008 | permalink | comments (157) | e-mail post

The Next Step

I need to test myself, find out where the limits are. I'm not looking forward to it. It's actually a little scary. But I need to know what my body can do.

Can I stand up? That's been getting harder. Walk with the walker? I can still do that. We got the wheelchair out and set it up. That may be the next step. It's not one I'm looking forward to taking.

If I can't really take care of myself, then what? Round the clock care? I don't think that's what I need. I just need a helping hand a few times during the day.

But how does that work? I don't want to go into a nursing home or hospital. That's a level of care I don't think I need.

But what do I need?

Life is getting more complicated every day.

7:00 AM ET | 07-10-2008 | permalink | comments (121) | e-mail post

Setting Aside Pride

I think it comes down to pride.

I'm not used to asking for help. That doesn't come easy to me. For virtually my entire life, I've been the person who others turn to for help.

I was the biggest, strongest guy in the room. It was only right that I be the one to offer, not receive, help.

Well, that's changed now, and it hasn't been easy.

These days, I'm the one who has to ask for help. I have to ask for something to eat, for help getting up, for a steadying hand as I move around. I need help getting cleaned up these days, too.

Laurie keeps saying that this stuff doesn't matter. But it does.

It matters to me that I am no longer self-sufficient. It matters to me that the simplest task can become difficult and complicated. It matters to me that I can't simply do whatever I want, when I want, and how I want.

I guess that's where the pride comes in.

I have to set that pride aside and realize that my life has changed, whether I like it or not.

But let's be honest here. I don't like it. Not a bit.

7:00 AM ET | 07-10-2008 | permalink | comments (110) | e-mail post

Live Chat with Leroy Sievers

Following Leroy's appearance on Talk of the Nation, he participated in a live chat with members of the My Cancer community. If you click the "Listen" link above, you can hear the audio of the conversation. Meanwhile, here's the archive of the chat room, where participants discussed Leroy's Talk of the Nation appearance and then proposed questions for him.

Continue reading "Live Chat with Leroy Sievers" »

2:45 PM ET | 07- 9-2008 | permalink | comments (3) | e-mail post

The Givers of Life

Laurie's days, are no longer her own. The cancer has stolen those days, changed them from the life she would want to lead to the life she has to lead. A life of caring for me.

Here are her thoughts on that ...

Good morning to all of you "life-givers" ... previously known as "care-givers." I've decided there needs to be an amendment to this term "care-giver" ... especially in Cancer World.

Giving CARE, in this world, is an automatic function of our daily lives, and it is a function that operates on a 24-hour clock.

If you're like me, sleep is not what sleep was, BC ... before cancer. Sleep comes now with one eye open, and both ears trained to hear any sound that isn't a sound of the night.

And it's all the other stuff that plays a part in the giving -- from making a meal, to playing cards, to just sitting by the bed, holding a hand.

It's the "life" part of the giving that is so important to acknowledge. We all give our "life energy" every day, to continue the life that's been attacked by this unrelenting enemy.

We'll do just about anything to make "their" day, every day, because we don't know when it will be the last day.

It's a breath-taking challenge. Somehow we find the strength. I just think it's important to salute you, "givers of life."

Remember ... Leroy will be on "Talk of the Nation" at 3 p.m. EDT today with guest host Ted Koppel. You can hear it on your NPR member station, or here on the blog, where there will be a live chat during the interview. Then Leroy will answer your questions starting at 4 p.m. EDT.

7:00 AM ET | 07- 9-2008 | permalink | comments (72) | e-mail post

Talk of the Nation and a Live Chat

This is a reminder that Leroy will be on Talk of the Nation tomorrow at 3 p.m. EST (19:00 GMT). Look here for the member station serving your area.

Also, as you listen, check out My Cancer for a live chat. And immediately following Talk, from 4 p.m. to 5 p.m. EST (20:00 to 21:00 GMT), Leroy will take your questions live.

4:19 PM ET | 07- 8-2008 | permalink | comments (6) | e-mail post

That Last Little 'Oomph'

It's scary. Very scary. Trying to get up out of a chair, or off the bed, and you can't quite make it.

Your arms or your legs are missing that last little "oomph" that will put you on your feet and up on the walker. You have to sit back down, gather your strength, and go for it again.

It scares me, because I know that some day, sooner or later, I may not be able to make that second try. Some day, I may have to accept being bed- or chair-ridden. But there's no way of knowing when that might actually happen.

There are little things that I need to keep an eye on, as well.

Every once in a while, I realize my speech gets thick for a couple of words. I usually do a quick "She sells sea shells by the sea shore," and I usually get through that just fine.

Other sensations pass pretty quickly, too. I assume they're caused by the brain tumors, which means they may become more frequent. Or not. After all, I did have those tumors radiated.

Bottom line, there's stuff happening all over my body. Keeping track of it all, making sense of it all, is a full-time job.

It sure would be easier if we came with some kind of user's manual.

7:00 AM ET | 07- 8-2008 | permalink | comments (81) | e-mail post

Life Goes On

It should be simpler. When you have cancer, you should get a pass on life's other problems.

But of course, it doesn't work that way. Life goes on, and we still have to participate. The same old problems exist, along with new ones we never imagined. And the problems from the past don't just go away.

It's hard to sort through it all. But we really have no choice. Maybe having cancer means we have to work harder to get things done.

I will be calling in for an interview on NPR's Talk of the Nation this Wednesday from 3 to 4. Ted Koppel will guest-host the show before a live audience at the Newseum in downtown Washington. If you would like tickets to the broadcast, please send a note to tickets@npr.org with "Leroy Sievers Tickets" in the subject line. I hope you can join us.

7:00 AM ET | 07- 7-2008 | permalink | comments (47) | e-mail post

Holiday.

Happy Fourth of July. I'll be back Monday.

7:00 AM ET | 07- 4-2008 | permalink | comments (28) | e-mail post

Normal Days

Another day in Cancer World. Actually, a pretty normal day.

A friend came over to visit. She brought cookies.

Another friend came over the day before. She brought cupcakes.

Clearly, my policy of "bring nothing" has failed miserably. I haven't
weighed myself recently, but I have to believe I have gained back some of the weight I lost. My doctors should be happy.

It's easy to think that there should be some kind of crisis every day in Cancer World. But that's not the case. Many days nothing much happens, at least nothing much related to the disease.

Today's been one of those days.

So I'm just going to end here, and enjoy a little quiet time.

7:00 AM ET | 07- 3-2008 | permalink | comments (74) | e-mail post

Just Say Anything

I was on Minnesota Public Radio yesterday, a phone-in show about cancer. The listeners always come up with good questions. Questions that make me think. Yesterday was no exception.

One person asked what more she could say to her friend who has cancer without being insulting. I think she, like so many people, was afraid of saying something that might seem insensitive.

That has come up a lot. But I really think it's the last thing a friend or caregiver needs to worry about.

Cancer patients know how difficult it is to talk about our disease. It's hard for us. I have broken down into tears any number of times recently.

But what's more important, more important than the words you might say, is the effort to simply say anything. And if that "anything" isn't about cancer, that's even better.

The best conversations I have these days are about something, anything else. Politics, sports, books, whatever.

If cancer is not in the room for even an hour or two, that's a gift.

And as time goes on, as the cancer becomes more serious, those hours without cancer become ever more precious.

They become something to treasure.

7:00 AM ET | 07- 2-2008 | permalink | comments (82) | e-mail post

Thoughts on Peace

Dr. Christian Meyer is my oncologist. He has been with me every step of the way on this journey.

Good days, bad days, we've shared them all.

But most importantly, I consider him my friend. When he had to give me the bad news recently about what my new scans showed, I asked him what he was thinking and whether he would share his thoughts with all of you.

Here's his answer:

PEACE?

Cancer. Worry. Hope. Anxiety. Cure? Weakness. Fear. Laughter. Sobs. Hugs. Anger. Healing? Naps. Sadness. Strength. Death? Insomnia. NED. Depression. Loneliness. Friends. Chocolate. Pain. Smiles. Tears. Life? Silence.

Some weeks ago, I asked, "What's peace, Leroy?"

"A moving target," he replied.

Peace is a word I use in many conversations I have with the people I care for. I'm looking for something concrete or constant I can offer them in the midst of all the uncertainty that swirls within this world of cancer.

Beyond the treatments and the trials and the waits and the wonderings, peace appears to be something positive that can ease the heightened emotions that accompany visits or therapies or scans.

I used to think I had some idea of what it meant. Maybe some kind of eureka moment in which "peace" could wash away the concerns that erode the confidence you need to maintain some semblance of control. If you achieved peace, worry would vanish and be replaced by contentment in everything related to the world of cancer.

That was pretty naive.

Sometimes I wonder how much I'm treating myself in my attempts to discuss "peace." Does it help me brace myself for the onslaught of emotions that accompany the lives and journeys of my patients and their families? And I wonder if it's truly fair to offer something so difficult to achieve in the middle of everything else that accompanies this diagnosis.

Part of the ritual I learned growing up in the Catholic faith is the "Sign of Peace." Toward the end of Mass, we'd offer a handshake or embrace to one another and say, "Peace be with you." It strikes me now that we did this weekly as if we were reinforcing the elusiveness of the answer to the question:

What is Peace?

7:00 AM ET | 07- 1-2008 | permalink | comments (79) | e-mail post