A Day To Celebrate

If there's ever a day to celebrate Leroy's creative energy, today is that day.

It's Halloween. A holiday that brought out his best ideas that fit into the theme of our annual "come as your favorite story of the year" party.

Dolly the Sheep, Linda Tripp, a Mad Cow, Janet Reno, just to remember a few.

His creations were legend and done with fine touches to detail. The band was loud. Tons of decorations. Talking and eating. The house was packed with friends dressed as headlines.

It was a happy time. No thoughts of chemo or radiation. A cancer-free zone.
Halloween rocked at our house.

So if you're in the mood to dress up and celebrate, make it a "Leroy-Halloween" and give it all you've got.

Happy Halloween

7:00 AM ET | 10-31-2008 | permalink

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Walking Together, Still

I'm more than five thousand miles away from Maui now. I've exchanged the gentle trade winds for the chilly Autumn wind. The brown sugar sand between my toes has been replaced by fallen golden oak leaves.

Worlds apart? Not really, because I have a special connection.

When Leroy and I sat at the pool in Maui, I pulled out the camera. We put our feet together and I snapped a picture. His size 13 matched up to my size 9 -- our feet, not our faces, posed with the pool and palm trees in the background.

I love that picture. In fact, it was on the program for his memorial service
at Discovery Headquarters.

I took it to show our friends in Maui. They loved it, too.

So when it was time for me to leave our favorite island after scattering Leroy's ashes, these special friends surprised me with a pendant. It's made from elements in Maui's earth.

But that isn't all. Lifting it to the light reveals two feet, side by side.

We're still walking together, no matter how many miles apart, and still taking it one step at a time.

-- Laurie

7:00 AM ET | 10-30-2008 | permalink

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Hope For Cancer Patients In Maui

Cancer in paradise? How could it be?

I mean, the U.S. Department of Agriculture goes to great lengths to keep foreign fruits, veggies, and plants out of Hawaii. You can't take certain seeds and flowers back to the mainland, either.

You think the TSA is tough? There are two agricultural checkpoints before you get on the plane to return to the U.S. mainland.

But cancer just creeps in ... cell by cell. We all know how it works. And if you're on the outer Hawaiian islands, cancer care appears to be limited.

But it looks like that's about to change.

There it was in bold print. A newspaper headline of hope for cancer patients on Maui. A new program giving access to 200 new and experimental cancer drugs and therapies at a local medical center. No more flying to the big city of Honolulu for treatment.

The money comes from the Hawaii Cancer Research Special Fund. A fund that gets its money from cigarette taxes. How perfect is that?

We can't really set up cancer checkpoints in paradise, or any where else ... but the easier it is to get what it takes to kill the beast, that gets my vote.

-- Laurie

7:00 AM ET | 10-29-2008 | permalink

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In Maui, Signs From Leroy

Leroy and I have talked many times about how special Maui is in our lives. This trip is no different.

Except this time, without him at my side, the signs of Leroy made it all the more special.

I know not everyone believes in those "signs", and I can understand that, but let me tell you, when you walk and talk with his Maui friends, who are so spiritual and mystical in their beliefs, it's hard not to believe.

There was the sunset Tuesday night. More brilliant and stunning than any other night. That afternoon, we had scattered Leroy's ashes. That night, it looked like the Maui sky welcomed him with a color-splashed banner of oranges and golds.

The next morning, the celebration continued with a vivid rainbow over the ocean. A rainbow with a beginning and an end.

Sea glass is plentiful here in Maui. The Pacific gives back her glass with softened edges and newly formed shapes. There on the sand, waiting for me, was an amber, heart-shaped piece of glass. Thank you, Leroy.

And the "Leroy" sign that really caught my breath? Driving back to the hotel, I glanced in the rear view mirror, and there it was.

You guessed it ... an orange Jeep.

That secret wave means so much more now.

-- Laurie

8:26 AM ET | 10-28-2008 | permalink

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The Trip To A Final Aloha

It's been quite a week. Life has changed again.

As you read this, I will be flying home from Maui. There are many details of the trip that will bring Leroy's life full circle.

Needless to say, this trip was all about him. His request. My promise to fulfill. In many ways it felt like we were still in the struggle together.

But this time cancer had no say in the matter. This was about resting in peace.

It was the two of us saying a final aloha.

-- Laurie

7:00 AM ET | 10-27-2008 | permalink

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Providing Humor And Normalcy

Every day is chemo day for Pierse Byrnes. The chemo room is her ballpark where the averages don't usually play out.

Leroy and I met this mega-watt oncology nurse when he began his treatment. She became a fast friend and helpful hand right up to the last day Leroy visited Johns Hopkins.

She's a special person. Most nurses are.

-- Laurie

When Laurie asked me to write another piece for the blog, she suggested that I relay a memorable story or event that occurred in my years as an oncology nurse. I said that I thought this was to be a blog, not a novel. Because I have a novel's worth of memorable people and events I could talk about.

People often ask how I ended up as an oncology nurse. The truth is, I didn't choose oncology. Oncology chose me. I was placed (not happily, I will admit) in the Oncology Outpatient Department for a nursing internship that occurred during the final semester of nursing school.

"Oncology?!" I remember saying to my friends. "Isn't it really depressing over there?"

How wrong I was. I think it took all of three shifts for me to recognize that this was the place for me. And when, two years later, I was offered a real job in the clinic, I accepted with alacrity. I have never looked back.

I love getting to know my patients and their families. I love (to a degree) the ribbing I get from Steeler and Redskins fans when I wear my Ravens shirt on Purple Fridays. During visits with my patients, we spend a lot of time discussing labs and side effects -- but some days, I think we spend more time chatting about life outside of this clinic. Our discussions can run the gamut from how to deal with constipation (everyone's favorite topic!) to new grandchildren, birthday parties, shopping, and will the Orioles EVER rise from the basement of the AL East.

Oncology patients are special. I love their strong will to live and their willingness fight this disease with every ounce of their being.

Are there sad moments? Of course there are. Life is not without sad moments.

But my feeling is, if I can inject some amount of humor and some sense of normalcy into lives that have been interrupted by this terrible disease, THEN I have done my job well.

-- Pierse Byrnes

7:00 AM ET | 10-24-2008 | permalink

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Walking With Leroy

Today, we hear again from Leroy and Laurie's friend Rebecca Lipkin, who has Inflammatory Breast Cancer.

I am a cancer novice. No one else in my family has had it. I have been basically healthy all my life. No previous surgery, no previous illnesses.

So who to turn to when I was diagnosed? The choice was easy. As a former producer for ABC's Nightline in London, I depended on Leroy Sievers to talk me through potentially dangerous assignments. After all, he had been there, done that.

When it came to cancer, again I had to rely on my former general -- my former executive producer. Leroy knew all about the world I was to enter. He and Laurie helped cheer me on, helped gird me for the battle ahead. Yeah, I hate the battle analogy, too--but it is the fight of one's life.

My fight has included seven rounds of chemotherapy, a mastectomy, five weeks of radiation therapy. Fatigue, nausea, disappointment -- but on the other hand, support and love.

Six months after the jubilation of finishing my treatment, in June of this year, I noticed some discoloration along my chest wall. My worst fears were realized. I had a recurrence.

One year after that initial diagnosis, I went back into chemotherapy -- back to the realization that my body is failing me, but my spirit is not. And I owe a lot of that to Leroy and his indomitable spirit.

At his desk in Nightline, Leroy sitting down was taller than me standing. At a party for him, I stood on a chair to see what it would be like to see him eye to eye. He said it was a strange feeling for him. I will never forget Leroy's size. But I always told him he used that size as a force for good, not evil. He did not intimidate. For many of us, he was a gentle giant who knew how to protect us and expect the best in us.

Knowing he was ahead of me navigating the medical system, made me stronger. Knowing Leroy was at Hopkins fighting the good fight made me realize I could fight, too, at the Royal Marsden Hospital.

The last time I saw Leroy was shortly after he left Nightline. He, Laurie, and my friend Elissa took a walk around his beloved canal. I always remember his strength and humor.

And we all knew, but somehow didn't want to accept, that cancer would eventually win. As it will eventually vanquish me. But learning that it did take his life rocked my world, as it did all those around him.

My world is a lot more lonely thinking of his absence across the Atlantic.

But I feel his strength through Laurie. And I feel it again when the oncology nurse infuses me with the poison that is supposed to keep me alive a little longer.

-- Rebecca Lipkin

7:00 AM ET | 10-23-2008 | permalink

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In The Cancer Trenches

Rebecca Lipkin has lived in the trenches before. As an accomplished television news producer, she's covered her share of conflicts around the world. She's back in the trenches now, this time fighting for her life.

This past June, she had a recurrence of Inflammatory Breast Cancer. She'd already had surgery and radiation, so it was back into the chemo room for more treatment. She's just completed her thirteenth round of chemo.

Her cancer experience is a little different. She's waging her battle across the Atlantic, in London.

We'll hear from Rebecca today and tomorrow.

-- Laurie

I often return to a scene from my recent past. A large room in a large hospital ward in London. Ten armchairs organized in a circular pattern.

In one of the seats, a middle aged woman, her head fully covered in a hijab, receiving her chemotherapy treatment. Her two daughters are at the ready, comforting her, looking into her eyes, looking at each other.

Across from her, a man, sitting, reading, wearing a Jewish skullcap, the yarmulka.

In other circumstances, these two people might barely meet, let alone look at each other.

But on this day, there are sympathetic glances. Because they are involved in the same battle -- to rid the cancer within them. And it is a battle that, reluctantly, I am facing, too.

My first personal introduction to Cancer World was back in June, 2007. I noticed what to many of my friends was unnoticeable -- a small, bug-bite mark on my left breast. Really, it was barely enough to worry about, except being labeled a hypochondriac.

But for some reason, I decided to check it out. My insurance had changed, so I thought I might as well see how the British system of referrals works.

My general practitioner looked at the mark, was not worried, but decided to refer me to another doctor that same day. I had a mammogram and an ultrasound. That very night, a breast specialist told me the news.

This was not a diagnosis but a hunch, she said, with 99 percent certainty -- I had breast cancer. Not just breast cancer, but a particularly deadly form of the disease called inflammatory breast cancer, or IBC.

I had never heard of the disease. In fact, most doctors have not. In the States, it accounts for less than 5 percent of breast cancer cases. Inflammatory breast cancer crops up more in North Africa than in Europe and America. It affects more people of color than white Europeans. It affects very few people, period.

It is a rare breast cancer that eludes mammograms. It grows in sheets, not lumps, so all those tools we are told about -- feeling for a lump in the breast -- are useless. IBC's symptoms are often thought to be something else. Many doctors think it is a breast infection, or mastitis, which often affects nursing mothers.

In my case, I had the right doctor, and the right diagnosis.

I am the same person I was on the day of that diagnosis -- an energetic, social, hard-working person. I'm the same person, only with a form of cancer that has a pretty awful prognosis.

I try not to google IBC anymore. It just gets me scared. One day I accidentally came across the memorial page -- and it almost ruined me.

I went to New York to get a second opinion, and it was essentially the same. The protocol was the same. But in the U.S. I faced a distinctly American nightmare that few Europeans understand. In Great Britain, I have private health insurance. Even if I didn't, I would have National Health Insurance, which would fast-track my treatment for breast cancer. If I were to return to America without a job, I would have a pre-existing condition and would probably be uninsurable. And the bills -- thousands out-of-pocket for that second opinion -- would increase exponentially.

That sealed the decision.

I decided to go back to where my support system is right now -- London.

-- Rebecca Lipkin

7:00 AM ET | 10-22-2008 | permalink

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'Normal' Remains Elusive

Today's blog is written by a dear friend who walks in Cancer World.

Her world shifted on March 30, 2006. Breast cancer. As she puts it, "I hit the trifecta. Chemotherapy, surgery, and radiation."

Her strength has returned, her surgical scars have healed, and it's a pretty "normal" life for NBC News correspondent Anne Thompson.

-- Laurie

"Normal," that's an ever-evolving, ever-elusive term in the cancer world.

When I was going through treatment, bald and on the verge of nausea five days out of every two weeks, I defined "normal" as having my own hair and energy back.

Today, my hair is back and by all accounts, I look "normal." So normal, that many of my friends who went through the slog with me in 2006 say they have to remind themselves I ever had cancer. "How are you?" has once again become a perfunctory question instead of one laced with concern and fear.

I may look normal, but I don't feel normal. I am on Tamoxifen, a drug that is supposed to keep my breast cancer from coming back. It has done its job for the last 26 months. It has kept cancer at bay, but it has also given me a laundry list of side effects. Every hour or two, I turn into the human rain forest, courtesy of "hot flashes" from the Tamoxifen. I can't remember the last good night's sleep I had. I can't fall asleep, and when I finally do, I wake up every time I sweat. So that means I am constantly exhausted. And I have this tire around my midsection that, despite eating healthy, jogging, and yoga, I can't seem to lose.

I could go on and on but you might think I am complaining. I am not complaining. I don't have cancer. I understand how lucky I am to be able to say that. But I am frustrated.

I've tried just about everything to lessen the side effects. At various times, I have stopped drinking caffeinated coffee and alcohol, and stopped eating spicy foods. I work out. I go to bed at a reasonable hour. I take Effexor and I am now doing acupuncture. I no longer have the ability to steam up a car window just by sitting next to it, but I still have hot flashes, sleeplessness, bloating, and lots of other issues.

Tamoxifen, like most things in the cancer world, is a blessing and a curse. It is saving my life, but making it harder too. I love and savor every day I have. Yet, despite appearances, "normal" still remains an elusive goal.

-- Anne Thompson

7:00 AM ET | 10-21-2008 | permalink

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The Rainbow After The Storm

I wear two bracelets that have carried me through Cancer World for many years. My "Cancer Sucks" bracelet just puts it all into perspective.

If you didn't know about the colors of cancer, you'd think the other
bracelet was just colored beads wrapped around my wrist. But it's so much more. Each bead says a silent prayer for every person fighting every type of cancer.

So when a friend presented me with a gift of a multicolored scarf, I assumed she made it with the cancer colors in mind. You see where my mind is these days.

But I was wrong. In the card, she wrote, "I truly believe we cannot experience rainbows without walking through the eye of the storm." She'd made me a rainbow, until I'm able to find one on my own.

The My Cancer blog will have some interesting guest bloggers this week. October is Breast Cancer Awareness Month. With that in mind, two dear friends who are walking that road will share their experiences. And a familiar "voice" will also check in.

Have a good week, everyone.

-- Laurie

7:00 AM ET | 10-20-2008 | permalink

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We Still Have Love

I think there are times when we lose sight of just how lucky we are. Still are.

Many of us who write on this blog have lost the loves of our lives. Others have lost dear loved ones who had major roles in shaping our lives. Unfortunately, some of us wear both those banners.

And there are those waking up this morning, still pushing life, in the midst of struggle. They probably won't win, but they also won't quit. Cancer's not for quitters. Cancer builds fighters.

The ingredient that puts us all under the same tent? Love ... from those we care about the most. As much as we give, we get back, times ten. We're so lucky. But sometimes, the sadness and stress that come with fighting cancer put that love in the shadows.

So what do you say? Put the hard part of cancer aside and feel the love a little this weekend.

We've got nothing to lose.

-- Laurie

7:41 AM ET | 10-17-2008 | permalink

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Honoring Leroy by Continuing the Conversation

Hi everyone,

My name is Andy Carvin, and I'm part of the team at NPR involved in overseeing our blogs. Earlier this summer, Leroy made it clear to us that he saw My Cancer community as a part of his legacy, and that he wanted the community to continue after he passed away. I was hoping to get your thoughts on how we might do that.

For example, we could create some kind of community space where you could start your own discussions, upload pictures or videos, etc. I can't see one person ever replacing the role of Leroy in this community, but there are certainly those among you who could potentially play leadership roles in this new community. So we would need to hear from you if any of you are willing to play such a role in coordinating the community.

My Cancer will always be synonymous with Leroy. But Leroy hoped the community would continue, and I'd like to do what I can to honor that wish. Please let me know what you think.

-- Andy Carvin

7:00 AM ET | 10-16-2008 | permalink

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The Way Things Used To Be

I picked up an old notebook filled with Leroy's blogs and started reading. There was a time when he wrote the blog in longhand...

"Life has changed. That's just the way it is. Old habits give way to new habits ... I want things to be the way they used to be."

Leroy's words, but how they echo the way I feel these days. It's been two months since my world shifted. I'm finding my way slowly. Old habits, by necessity, morph into new habits.

But going back to the way things used to be? That's a wish that can't come true.

-- Laurie

6:00 AM ET | 10-15-2008 | permalink

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Planting The Future

Fifty tulip bulbs are in; there are another hundred to go. It's my way of looking ahead. Looking toward the future.

The experts tell us to take small steps away from our sorrow. Do what feels right.

Planting the bulbs feels right. So they are tucked away, surrounded by fertile soil, but nowhere near ready to blossom.

Six months down the road, after heavy rains and freezes and snow storms, all the elements that affect their future, these bulbs will greet the world again as beautiful flowers.

New growth and new life.

Those tulips and I ... on a parallel course.

-- Laurie

7:00 AM ET | 10-14-2008 | permalink

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What Do We Call This?

We have an assignment.

We, and I mean all of us who are struggling with loss, need to come up with a name for it.

We're here because of cancer. We all know the symptoms. We're not sure when or why the tears come, but they do, and we cry. A lot. When we least expect it, there's this feeling in our gut ... like a knot tightening. Visit an old familiar spot, and the beads of sweat roll off the forehead. Read an email, or a caring letter from an old friend, and the emptiness is overwhelming.

Our internal compass is broken and no longer shows us the way. Cancer's last hurrah.

So what do we call this?

-- Laurie

9:55 AM ET | 10-13-2008 | permalink

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A Forced March

It's pumpkin picking time. Around here, the few remaining farms that haven't been plowed under still invite folks to grab a wheelbarrow and go out to the pumpkin patch.

Everyone has their own idea of the perfect Halloween pumpkin. It's such a fun fall tradition. Leroy and I did it every year.

This time, I did it alone.

A forced march through the field of pumpkins with a smile on my face and tears in my eyes. Memories and emotions pointing the way up the dusty road and back toward home.

The pumpkins sit out in the yard now, on the ledge where Leroy would carve them a few days before Halloween.

I can't imagine doing that.

Not without his steady hand to guide me.

-- Laurie

7:00 AM ET | 10-10-2008 | permalink

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Reading The Book Of Life

How do you paint the Fall? In reds and oranges and yellows.

The trees are yawning, getting ready for their winter snooze. The days are getting shorter, and the sunsets are bolder and meant for sharing.

For all of us out here who had loss this Summer, or in any season, it's a
chapter closing.

This Book of Life is a difficult read.

-- Laurie

7:00 AM ET | 10- 9-2008 | permalink

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Finding Comfort And Comfort Clothes

I got some great old photos of Leroy from one of his old college friends. They provide a lot of comfort.

The picture of him in a dark sweater with a big orange P on the front. That was his Princeton experience. Probably not the perfect fit of student and school, except that's where he ruled in volleyball.

I love that sweater because it was a part of what shaped him. I even wear it.

Then there are the really classic, really Leroy poses. Long hair and wire rimmed glasses. Skinny Leroy pictures that scream the '70s.

I love the shot where he's wearing a Levi's denim jacket. THAT was Leroy.
That was the Berkeley Leroy.

In fact, there's one of those jackets hanging in the closet right now.
It would be this time of year when he'd be wearing it, too.

As I type this, I'm wearing a big Leroy T-shirt. One that he wore on a day off, just relaxing or walking along the Potomac, and does it feel good.

There's comfort, and then there's comfort clothes. These provide me
with both.

-- Laurie

7:00 AM ET | 10- 8-2008 | permalink

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Entering Our World

My thoughts have traveled back up 95 North, into Baltimore. Stopping at the O-R inside Johns Hopkins. Not an easy trip. A friend had surgery there yesterday and entered cancer world.

Our world.

Someone else who has stepped into the den of the beast. Why is there always room there for one more?

But he had done his home work. Researched his disease and his options. And when the discussion was over, surgery was the choice.

From all accounts it went well. We can only hope now that he'll heal quickly and completely.

Just like every one else who has stepped into that world today.

-- Laurie

7:00 AM ET | 10- 7-2008 | permalink

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The Markers Of Life

Birthdays are such a special time. A friend of mine was celebrating his this past weekend. Actually he started the celebration on Friday, and it was one happy event after another, ending in a gathering with good friends, good food, and party hats last night. A full weekend of marking his birth and his life.

I called and said, "Happy-happy," and he chuckled and said, "I am happy. Happy that I woke up today and can remember it's my birthday!"

When you turn 62, I guess you start to think about that. He mentioned that he now qualifies for a discount at the movies, too. In New York City, getting a discount on anything is something to celebrate.

Leroy and I used to have birthday weeks. It was our week to get special treats, pick favorite restaurants, or just remind each other that we were entitled to do whatever we wanted that particular week, whether we used the privilege or not.

Cancer didn't stop that, either. Not a chance.

It may have put a dent in how we celebrated. We weren't able to go out to our favorite restaurant, so we brought the restaurant to us.

For dessert, the cherished grocery store birthday cakes were the big finale. Candles marking the years of life well-lived and one extra, that always burned with wishes of good health and many more years of life. That was the most important candle of all.

No matter what side of cancer world you're in, birthdays need to be special. They are markers of life.

Party on!!

-- Laurie

9:29 AM ET | 10- 6-2008 | permalink

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The Layers Of Cancer

How many layers does it take to get through cancer world? You have to be a pretty hardy soul to make it through from beginning to end.

If you're the patient, you have to find the first layer of strength just to absorb the body blow after being told you have cancer.

Then it's on to the world of treatments and scans and surgeries and medicines. Lots more layers needed there. Some that will take you through years of recurrences. And sadly, some that will just give you the strength to fight until the cancer takes the fight away.

Being the care/life giver ... we need different layers. Call it protection. We need a layer, actually an iron glove, to fit tightly around our hearts, because they take such a beating over time.

We have to find a layer of strength to watch as our loved ones go through countless procedures, just to live.

We have to find a voice we've never used before to be their advocate when they can't speak for themselves.

And who knows where that layer of stamina comes from when the cancer-grip tightens and the care level rises? And after death marches in to finish up cancer's work, what then?

We need a survivor's layer.

Not a good idea to shed that "heart glove" just yet.

-- Laurie

8:46 AM ET | 10- 3-2008 | permalink

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Keep Fighting

This fight isn't over. In fact, there's no end in sight.

I'm talking about cancer.

In my house, the struggle has come and gone. But there are still so many of you in the middle of it.

You must fight on. Keep pushing. Challenge your doctors.

Some of you have said you miss Leroy's words.

There's no more advice. No more suggestions. So do what he would do.

Ask, "What else have you got?"

If the big guy left any lessons behind, it was to ask questions and think outside the treatment box. Be a cancer pioneer.

A doctor called the other day from California to tell me he had been at a conference where he overheard a group of his colleagues actually talking about Leroy and his blog. Saying how he had changed the dialogue on cancer.

That means Leroy is still making a difference in cancer world.

And he needs his army to fight on.

-- Laurie

8:35 AM ET | 10- 2-2008 | permalink

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Some Commenting Changes

Hi Friends,

Beginning late tonight, we will be implementing a different kind of commenting system, which will mean a departure from our routines. Two major things will change:

From here on out, you will have to register before commenting and the comments section of all old entries will be closed. All your comments will still be there, but we won't be taking any new ones for those entries. Comments for new blog entries will close after seven days.

That said, with our new system, your comments will go up immediately, hopefully creating greater fluidity in conversations. We'll still keep an eye out for problematic comments and you can help with this, too. Each comment will have a "Report Abuse" button and while this is a model community and I'm sure its use will be sporadic, if something is questionable, use it.

These changes are already live across the NPR site, so you can already register, look at the frequently asked questions and read more about the changes from Dick Meyer, our editorial director. Also, if you've got questions or concerns, just put them in the comments section of this post and I'll do my best to answer them.

UPDATE: The change is coming a little earlier than expected. Tech team is set to make the changes live at 5 PM ET.

-- Eyder

11:31 AM ET | 10- 1-2008 | permalink

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A Moment Immersed In Life

Grief took a couple of hours off last night. No one was more surprised than me.

I was invited out by a couple who fall into that "best friends: couple" category. They've been by my side since Leroy's death. Checking in, taking my temperature, just being there.

They are the kind of friends Leroy used to describe as friends who always heard the unfiltered truth about the scans and the progression of the cancer.

They still get the unfiltered truth from me, about how hard it is now that Leroy is gone.

But at dinner, we talked politics, what our day had been like. It was a conversation between three people immersed in life.

That fourth chair was empty. Don't think for a moment that it went unnoticed.

But it was a start.

I could almost see Leroy smiling, whispering, "Way to go, Laurie."

-- Laurie

7:53 AM ET | 10- 1-2008 | permalink

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