January 30, 2009

With The Circle Complete, We Begin Anew

It's a bittersweet day. "My Cancer" is turning a corner and will morph into "Our Cancer" next week. We've had quite a ride, haven't we?

For most of it, I've been on the sidelines as an observer. This was always Leroy's hood. It's where he came to clear his head of cancer. The blog put him at ease. He could tell you how he felt and what he felt, and you felt it, too. He spoke for so many.

As I sit here writing this, I see him at the computer at home, typing away. I see him on the lanai in Maui, typing away. Even though we were trying to get away from cancer for a few days, it was still important to "talk" to all of you.

I see him in his bed, no longer able to sit at the computer. He would write the blog and I'd type it so this community would know, even in the final stages of the fight, what he was thinking and how he was feeling. He put it all out there.

This great big pied piper of cancer world created a place where we could all come and breathe.

It was never my intention to continue the blog. But it was Leroy who thought the grieving side of cancer would bring his story full circle. That must have been his "journalist-gene" kicking in. The story should always have a beginning, a middle, and an end.

So we all grieved together. The blog changed and we welcomed new members. Many had also seen the worst of what the beast had to offer. We lifted each other. The circle was complete.

Now we begin a new circle. Filled with new conversations, new information, and new opportunities. "Our Cancer" will be the best place to come when cancer interrupts a life.

You'll still hear from me, just not with a daily blog. So talk amongst yourselves ... I'll be listening.

More importantly, I really think Leroy will be listening, too. After all, we're still walking in his hood.

-- Laurie

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A New Home

As you have read, My Cancer will now be Our Cancer. Starting Monday, you'll find a link to the new site in the Essential section of NPR.org, the same place the link to My Cancer has been.

Also, you can bookmark the following address: www.npr.org/ourcancer

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January 29, 2009

A Big Job To Do

A "lengthening tally of losses." That's how Maureen put it into words in her comments to the blog yesterday. She was reacting to the news of Randy's death. His name has been added to the others who have passed through our community. Some stayed with us in time measured in years, or in Randy's case, measured in weeks.

No matter what measuring stick we use, we have all come here and found a place that is our safehouse. We can talk about death, we can talk about treatments, we can laugh, and we certainly know we can cry together.

The new site, the Our Cancer place, will allow us to continue and even grow with pictures and stories and conversations. So many of you have already found it and have begun to carve out a new place.

Spread the word. There's room for so many more who need a place like this to feel welcome. When you're in cancer world, feeling welcome and safe is a gift.

Leroy planted the seeds. They have rooted deeply in the soil of this blog.

He left us with a big job to do.

-- Laurie

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January 28, 2009

Hoping Randy's Found Peace

We've lost Randy. His niece broke the news on the blog.

We hardly knew him. He joined our community on December 16th. It was his birthday weekend and the beast had found him.

Randy had an openness about him. I think he was shocked to find himself in this place, so he got down to the business of cancer right away. He wanted the road map through this world and this group was ready to lead him.

We chuckled with him when he talked about losing his hair and we told him there was no shame in admitting he was just plain scared. He came for advice and he got that, too.

His journey was a short one, but he made an impression. He left his mark, and that's what it's all about.

In his first posting, he asked, "Is there peace?"

I hope he has found that there is.

-- Laurie

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January 27, 2009

Our Cancer is About Us

The new Our Cancer community has been live for less than 24 hours and I'm happy to report that people are beginning to use it. As of this morning, around 50 of you have joined the group, and a number of you have started posting introductions about yourselves.

A few people have asked me if Our Cancer is just a new name for the blog, so I wanted to explain a bit more. Our Cancer is whole new thing that's a direct offshoot of the blog, which you can find at npr.org/ourcancer. On the blog, Leroy or Laurie would write something each day and publish it. Then the rest of you would then post a comment as a reply to whatever they wrote. It's a great way to collect responses from people, but doesn't make it possible for everyone to start their own conversation.

With Our Cancer, any of you can begin your own discussion or share your own story. For example, if you wanted to start a conversation about who's thinking of getting involved in a particular clinical trial, you could go to Our Cancer's discussion board, click the "start a discussion" button and begin a conversation about it. For example, Liz L. has already started a discussion about chemo fog. Or if you wanted to share a story of your experience at your first chemo session, you could create your own blog post by clicking the "add a post" button - and maybe even write other blog posts as you complete your treatment. That's why it's called Our Cancer -- it's a place where all of us can share our experiences in Cancer World in a collaborative way.

To get involved, please visit npr.org/ourcancer. We really hope you join us; the more of us posting there, the more useful it'll be for all of us as a community.

-- Andy Carvin

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The Big Step Of Hospice

A year ago today I was sitting at home, waiting for a knock at the door. It would change my life again. It would change Leroy's life again, too. It was the day we would meet the hospice nurse. An introduction to our future.

This would be the second time a hospice person would come into our home. The first time was a bad fit. We both couldn't wait for her to leave. So this time around, we were a little nervous.

Leroy wrote many times about the question of whether, or when, to call hospice. The subject, I admit, always caused me to break out in a sweat. It's such a big step, deciding how to spend the final days of life with your loved one.

It's something many of you have talked about these past few weeks. Our community is hurting. Too many needing hospice care.

I received an email yesterday that a friend's family had called in hospice to ease the pain of a relative in the final stage of cancer. They asked for prayers and hoped this beloved family member was finally free from the pain of the beast.

I guess that's what hospice does best. Ease the pain.

It was seven months later before our hospice nurse would return. But this time she came to do her job.

By the way, I'm sure you've all seen Andy Carvin's note on the blog about the new "Our Cancer" site. He has taken great care to grab you by the hand and walk you through the new opportunities available on the page, but we welcome your questions, too. Andy knows all the answers, simple or complicated, and we all want everyone to feel comfortable using the new "Our Cancer" forum.

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January 26, 2009

Introducing Our Cancer

Hi everyone,

My name is Andy Carvin, and I'm part of the team that coordinates NPR's online communities. You may remember that I wrote a blog post several months ago talking about the possibility of creating a new space for members of the My Cancer community that would give them new ways to interact and support each other. Today, we're launching that new space. It's called Our Cancer.

When you visit Our Cancer for the first time, you'll find some things that are familiar, but largely it will be a new experience for most of you. Up until now, we've interacted through the blog, which meant that Leroy or Laurie would write a post, and then the rest of us would respond, having a conversation in the comment threads. With Our Cancer, things will be different, as all of you will be able to start your own conversations. Each one of you will be able to post blog entries and start discussion threads. You can even upload a photo or video clip and have people discuss it, or share an event listing with everyone. If you've ever used Facebook, it's kind of like what's known there as a Facebook Group. It's a place where all of us can take the lead and begin conversations that are important to us.

Since Our Cancer is brand-new, there isn't much content there at the moment. If you'd like to see what a community looks like once people have been using it for a while, try poking around our All Tech Considered community. It's about technology, which may not be of interest to you, but it'll give you a feel for how people use our community tools.

Our Cancer is open to everyone, so right now you can go to the site and poke around. If you'd like to participate, though, you'll have to be a registered member of NPR.org. For those of you who have been posting comments on Laurie's blog entries over the last few months, you're good to go; just visit Our Cancer and click the big blue Join This Group button. If you're logged into the site already, you'll join it immediately; if not, it'll ask you for you to log in first.

To register, go to our registration page and follow the instructions. Once you're registered and logged in, go back to the Our Cancer page and click the Join This Group button. After you've done that, you'll be able to take full advantage of the community, such as posting your own blog entry or starting a discussion thread. You can also upload photos, video or event listings.

Whenever you go to the Our Cancer group, you'll always see most recent blog posts first. Just to the right of the latest blog post, you'll see two tabs; one for blogs and the other for discussions. If you want to see recent discussions, just click that tab and it will switch to the discussion. There's also a "view all" button for both blog entries and discussions so you can browse recent submissions from other community members.

Our Cancer will be a new experience for many of you, so we realize it may take some practice. Feel free to post comments to the blog if you have any questions on how it works, and we'll do our best to help you out. Meanwhile, we encourage you to start discussions on things you care about. You're the experts in your own experiences in Cancer World, so we're hoping you'll take the lead in sharing your stories so others can benefit from your wisdom.

Thanks again to everyone who's given us feedback on this project. And above all special thanks to both Leroy and Laurie - Leroy for encouraging us to continue the community and Laurie for helping us make it happen. This community wouldn't be here if it weren't for them.

-- Andy Carvin

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Winter Is What You Make It

It's been a weekend of bright blue beautiful days. Very cold but spectacular days. Walking on the C & O canal, I look up into a sky that is so clear. No clouds. Just the bare branches of the trees in their deep winter sleep, reaching up to the heavens.

My dear friend Carol, who walks with me, made an interesting comment as we were finishing our six mile jaunt. She said before she got into walking in the winter with me, she only thought of it as something she had to get through to reach Spring.

What she doesn't know -- until now, because she reads the blog -- is that she has made this winter bearable for me. That early morning frosty air clears the mind. I've been able to put one foot in front of the other and march down the canal path because she has been by my side and listened to my sorrow spill out in rants and tears and Leroy stories and sometimes all three combined into one long walk. Some days, the hurt has just poured out of me.

Remember what the experts tell those of us who are hurting from our time in cancer world. Get plenty of rest, eat well, and exercise.

And if you have a "Carol" in your life, you'll find that winter is what you make it.

-- Laurie

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January 23, 2009

A Season Of Loss

It seems like so many of us connected to yesterday's blog. Could it be the gray of winter? Everything is so drab. It's cold.

Life has lost a lot of its colors. Or do we see it that way because we are going through a season of loss?

I was trying to explain that to a friend who knew Leroy well. She commiserated with me, but truthfully, if you're not going through it, you can't possibly feel it.

Laurie Hirth, you have made such giant strides moving on in your life without Neil. Then, boom ... two steps forward, ten steps back. Sasha, Eileen, Patty -- you get it. Whether you're anticipating what's coming or are in the heightened sense of sadness. You get it.

Some of you saw it as a bump in the road. But it feels more like a shift in the grieving process. Early on it was a heaviness that could not be shaken. Pressure in the heart that wouldn't allow me to breath.

Now, it's being alone. And alone isn't fun. It's not the kind of alone that can be filled by calling a friend or going shopping or watching a movie. This "aloneness" comes from missing Leroy. Plain and simple. I'm in the missing part of this process. He left a crater behind where he once stood. That's the way my friend described it, and she's right.

Stan, you say you miss him and didn't even know him. Not true. Every day on this site, he shared a piece of himself with you and many others. You knew him well. You are right to be missing your friend.

-- Laurie

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January 22, 2009

Missing That Familiar Presence

It's the simplest things that remind me every day just how much I miss Leroy. The chatter in our house over the Inaugural events of the past few days would have been non-stop. Recapping the coverage, sharing experiences. It's just what we did as journalists, as interested observers of history.

How I missed that this time around. I miss his voice.

And the new season of TV shows has started. 24 one of our favorites, is back with all cylinders firing. Jack Bauer and the gang had a huge two-night season opener, but there it sat on the TIVO. No Leroy to share it with.

The chefs on Top Chef don't know it, but they've lost one of their biggest fans. We would watch and marvel at how these contestants would whip up some beautiful food on a plate with just a few mushrooms, something reduced in a pot, and something else the chefs would call "protein." Of course, we simply know it as fish, meat, or poultry.

And when I'm scanning the movie channels and stumble across Gladiator, Blood Diamond or heaven help me, the one millionth showing of Dirty Dancing, I just reach for the power button on the clicker.

Too many reminders of how much I miss that big familiar presence in my life.

-- Laurie

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January 21, 2009

A New Beginning

It was a sunrise made to order over Washington, D.C. An awakening in a sky that was flecked with pinks and golds and wisps of cloud backlit by the rising sun. And it only got brighter as the early morning hours ticked away on Inauguration Day.

A hopeful sign and a new beginning for our country. A new beginning for all of us.

If you're a card-carrying member of cancer world, you look for new beginnings. Hope and change in our world mean something a little different. We hope for added funding that will help push treatments forward, and we hope the scientists are successful in their attempts to make vaccines and find other creative ways to kill this killer.

There are so many voices screaming for attention for so many causes. It's up to us to turn up the volume.

I know there is a plate full of problems on the priority list, and I don't envy President Obama as he sits down in the Oval Office today. The economy, wars, unemployment ... and cancer.

The beast never rests and neither can we.

-- Laurie

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January 20, 2009

Another One For The Beast

Sitting in a church this weekend, saying good-bye to a friend. Mary lived so much of her life at NBC NEWS. She always seemed to be on the job. That was two years and a day before cancer took her away from a loving daughter and other family, not to mention a room full of friends now mourning her death. She barely had a chance to enjoy retirement when chemo replaced gardening and traveling and all the plans she'd had for doing the things she never had time for because the job directs your days.

Score another one for the beast. A life cut short. Love lost. A family shattered. Friends losing friends.

Cancer, in a nutshell.

-- Laurie

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January 16, 2009

Who Could Play Leroy?

What if Leroy were a movie? I mean his story, of course. We'd all need a lot of Kleenex. It would be a tearjerker.

But who could fill those shoes? Who would be cast in the leading role? He'd have to be a big guy. Not just tall, but big, with broad shoulders, and he'd have to know how to use his size. Then there's the laugh. Who in Hollywood could match that deep, robust laugh? That was Leroy's calling card.

Most important of all, who could capture the "Leroy" part of Leroy? Strength. Humor. Stubbornness. Impatience. Compassion. A communicator, with a huge heart.

And he'd have to have an appetite, too. Macadamia nut-encrusted ahi. Crab cakes. Unlimited chocolate and plenty of good Chardonnay, just for starters.

This could be the role of a lifetime! Far too short a lifetime.

-- Laurie

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January 15, 2009

Our Cancer: Doing A Little Growing

"Life is change. Growth is optional."

That's what the sign on the firehouse lawn said, in old fashioned black plastic letters that were a little crooked. The billboard had seen better days, too. But the message was right on target.

It doesn't matter where we fit in cancer world. Our life has changed. It's the growth part that is up to us. Do we decide to keep on fighting? Remember Leroy's words, "It's still a life worth living." It's also a life that is still worth growing.

We're going to do a little growing on the blog in the next few weeks, too.

Eventually, this blog will change names. When Leroy began writing, it was "My Cancer," because it was. Now it's become "Our Cancer," and that's what we'll be calling it when it takes on a new face.

It will have a new home at NPR. A place they call a Community Forum. A place where this community will be able to continue to share personal stories, but also open a dialogue on the many faces of cancer.

The technical details of this, I will leave up to Andy Carvin. He's a digital wizard at NPR. So when the time comes, Andy will join me here on the blog to guide you through the new steps of finding "Our Cancer."

-- Laurie

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January 14, 2009

My 'Dumbo's Feather'

Tomorrow will be five months since Leroy's death. And you're still lifting while I struggle through the pain and loss and the emptiness of missing him.

To steal a page from Walt Disney, this community has been my "Dumbo's feather." The cutest little elephant with the great big ears who needed his friends to convince him he could fly. Dumbo had no confidence. His faith had been shattered. But his best friend, Timothy Q. Mouse, and a community of crows gave Dumbo a feather and convinced him it held magical powers. With it, he could soar above the circus crowd.

That feather worked its magic until one day, it fell from Dumbo's grasp. As he plummeted to the ground, Timothy confessed to Dumbo that the feather really wasn't magic at all. He had the ability to fly all along. He just needed a little "lift."

My feather, your lifting, has been put to good use these last few days. And believe me, it's been tested. Just being back at work. So many times wanting to call or email Leroy. It had always been a natural part of the work day.

So I'm still holding on to the feather you've given me. Some day I will be able to put it in a safe place or maybe even pass it on to some one else. But for right now, Dumbo's feather is working overtime and I'm holding on tight.

-- Laurie

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January 13, 2009

Back At Work, Leroy Is All Around Me

Life has changed again. I went back to work. I mean, I actually drove to the office and sat down at my desk.

When Leroy's cancer required more care, I was able to stay at home and do my work. Since he died, I've been trying to patch the holes he left in my heart and in my soul. The time away from work was absolutely necessary.

So I've done all the things that you do after being away for so many months. Got a new phone pin number. Cleared off the desk that was full of old newspaper clippings. Said hello to old pals.

But Leroy is here, too. I look up at the wall and see him in Iraq. I see him in Hawaii . There he is in the emergency truck he drove during Hurricane Katrina.

He's all around me. I need to believe that as I take another step forward.

-- Laurie

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January 12, 2009

Finding A Cure With Sacrifices

I was at Hopkins last Friday. It was a business trip, but there I was, tripping over hundreds of images of visits with Leroy. There was just no way to escape it. It was our life for such a long time.

I try to soften the memories of the really tough days there. What I want to remember is Leroy looking at his doctors and saying, "Use me. Let's give it a shot." He had the courage to put himself in a place others were not as willing to go.

I guess he always knew the cancer would take his life. But if there was a chance that something he did would open up new kinds of treatment for others coming in that door after him, he was willing to try.

The flip side of that was true too. We would hear about treatments in early stages of development on our visits to the clinic. Promising attempts at killing cancer and prolonging life. Some of those procedures are being used now. They weren't quite ready for prime time when Leroy was a patient. Would they have given him more life? Maybe.

So, I find myself wondering, when the day comes and I hear that researchers have found the key to knocking out colon cancer, or discovering some new drug that devours cancer cells and makes the disease an annoyance instead of a death sentence, how will it feel?

If it means a world with less cancer, it can only be good. But I'll quietly thank Leroy and all the others who paid if forward. Without their sacrifice, it will never happen.

-- Laurie

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January 9, 2009

A Trip Back To Hopkins

I've filled up the gas tank to make the trip up I-95 today. It's been a while, but those instincts are sure to kick in once I get on the road. I'll look over to the passenger side of the car, to the empty seat where my co-pilot used to sit, sipping on his iced venti, non-fat mocha. The image is crystal clear.

Johns Hopkins, here I come.

It's time to check-in with the folks up there and see how the Leroy memorial fund is doing. What's the next thing we can do to contribute to the patients and their families fighting cancer? It's a good feeling knowing that those double-X, Leroy-sized gowns have made a difference. But there's a lot more to do.

I'm not sure why, but one of the hardest parts of going there is pulling into the Weinberg Center parking lot. Driving down that ramp just haunts me. It must trigger memories of anticipating long days filled with treatments and doctors and sad news.

It's a mixed emotions kind of day. I like seeing familiar faces. Old friends, medical wizards who worked their hardest giving Leroy quality as well as quantity in his shortened life.

And it's "Purple Friday." Few towns love their NFL teams like Baltimore. The Ravens have a big game against the Titans in Tennessee this weekend. Most of Hopkins goes purple. Even the chemo room takes on a purple hue.

It's all about team spirit, isn't it? In football or in cancer.

-- Laurie

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January 8, 2009

An Exclusive Club

Our president-elect went to the White House yesterday. It was an invitation to lunch at an exclusive club he's about to enter. Only current and former U.S. Presidents attending. Barrack Obama collected advice, good counsel, and fellowship, he said, from these men who have lived the unique life of a U.S. President.

That's good, because he's going to need all of it, stepping into a world as complicated as the one we live in these days.

Listening and learning from experience always pays off. This community does it every day. I look at this blog as kind of an exclusive club, too. Leroy created it so he could express his day-to-day life with cancer. He helped so many through his experiences with the doctors, the treatments, and the daily ups and downs of living with the disease.

You shared back. Sometimes there was fellowship, sometimes advice, sometimes good counsel. Whatever the daily posting was, it gave this cancer club the power and knowledge to face another day in a world just as complicated, in different ways, as the one our next president is facing.

These last few days, this community has shown its strength through experience. The suggestions to Sasha and others in times of need can't be matched.

In this club, you all rock! I'm proud to stand with you.

-- Laurie

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January 7, 2009

Cancer World Resolutions

There's one more piece of holiday business to deal with now. I'm not talking about returning sweaters and shirts that don't fit, or the dismantling of the Christmas tree.
This is the season of resolutions.

Watch any morning television? There are parades of people who have lost hundreds of pounds. They resolved to lose the weight and the message is, you can too. Losing weight in the new year is a slam-dunk resolution.

The experts tell us it's better to wait a few weeks before we make these promises. I'm not sure what the benefit of that is.

So what kind of resolutions can we make if we're living in cancer world? Patient or caregiver, do we vow to take better care of ourselves and each other? Do we resolve to find a way to stay in touch with the world we left behind?

Then there's the bucket list. That's a special kind of terminal illness resolution pact. Leroy didn't really have a bucket list. He always said he'd had a good life with lots of adventures.

He just wanted his life to stay as normal as possible. If he had resolutions, they revolved around cheeseburgers and chocolate.

Sometimes resolutions don't have to be about weight loss and exercise.

-- Laurie

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January 6, 2009

Getting Through It With Help

She's "worn to the bone." Her "head is spinning." She says she "doesn't want to lose John, but yet sometimes, I can't wait for it to be over." That's how Sasha agonized over her situation yesterday.

Did you feel your stomach tighten? Did that overwhelming emotion of dread creep back into your head? I felt it when I read Sasha's comment. Any of us who have walked in those shoes feel her helplessness.

Sometimes, Death knocks on the door and then steps back. But while it lingers, it causes such anguish in the heart. There were hours when I looked at Leroy and wondered, did I do enough? Did I push him too much? Should I keep trying
now, or is it better for him to slip away under a blanket of morphine, free from the pain?

All the fighting, the treatments, the surgeries, the scans. The cancer had worn down that mighty strength. And that's when the cracks in my armor started to show, too.

Sasha, you are exhausted and you're hurt. You put everything you had into this fight, too, and this nasty disease will still take John's life. How can that be?

For as long as I thought I could do it alone, there finally came a time when I realized I needed some help. Feeling your words, you are there, now. This community is always here to give you support from a distance. If we could spare you this pain, we would. But you need someone to help pull back those covers. John still needs you. It's a very hard time.

Hospice, family, friends. You can't do it alone.

But you can do it.

-- Laurie

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January 5, 2009

A Reminder That Keeps Me Connected

I'm constantly looking for "connections" to Leroy. I haven't lost it. I'm not expecting to find notes on a foggy mirror or an empty gallon of milk in the refrigerator. Just some gentle reminders that keep him close.

After almost 25 years together, there were times when one of us would be thinking something and the other one would say it. We could finish each other's sentences. So now it's especially nice when something triggers a flashback.

I've always loved orchids. When we lived in Miami, we had many varieties scattered around the house. Leroy would bring them home as gifts and they flourished.

Foolishly, I thought I had the touch to keep them blooming and beautiful. It wasn't me at all. It was hot and humid in Miami. The perfect environment to grow orchids.

So when we moved north to Maryland, it became apparent, quickly, that my orchids would suffer, curl up, and end up in the mulch pile. But Leroy would bring me another one, encouraging me to try again and hope for better results.

Gradually, I found a formula that worked. This is orchid spiking time, when the plants stretch out their new stems and begin to wake-up. The first of many of those Leroy plants has buds, and this morning, a new flower is beginning to open.

His words of encouragement paid off. And I have a wonderful reminder that keeps me connected.

-- Laurie

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January 2, 2009

'Calm' And 'Flexible'

There are so many ways to start fresh. We've said goodbye to 2008 and greeted the new year.

Among other things, I've decided to paint a few rooms. It's such a labor-intensive chore. Before the painter strokes the walls, I'm clearing the way by carefully removing all the pieces of our two lives that have gathered on shelves over the years.

Every picture has a story. Almost every item comes from somewhere that was a story on Nightline or, in my case, NBC News. A good producer always makes time for good shopping.

So there I was, remembering trips to the Middle East, past Olympics, even old hurricanes. And then it came time to unplug the neons. Two neon lights I had made for Leroy the year we remodeled this house. One said "calm" and the other said "flexible."

He kept reminding me to "stay calm and flexible" during the construction. Not so easy to do. We were promised we'd be moved in by Thanksgiving. That year we ate pumpkin pie sitting on a blanket on a cold cement slab with no windows or doors. Not my idea of being moved-in. You get the picture. Leroy unwrapped those neons that Christmas morning and I can still hear him laughing.

"Calm" and "flexible." Good advice then. Good advice now.

-- Laurie

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Leroy Sievers

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