Reclaiming Halloween

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It's Halloween, one of my favorite holidays.

It breaks my heart to see kids trick-or-treating at malls these days.

Trick-or-treating should be done in real neighborhoods, with real houses and real dogs that bark and real trees that take on different shapes at night.

But all that has changed. Real neighborhoods aren't always safe. Parents worry that candy has been tampered with.

I miss the innocence of the old Halloweens, when someone in costume jumping out from behind a bush was enough to double your heart beat.

There are enough real scary things in the world. We deal with a lot of them every day.

So it's a shame we've lost the fun scary things.

I'm still determined to dress up one year as a tumor.

I hope that we've at least held on to bad taste.

HAPPY HALLOWEEN!

Leroy Sievers

7:30 AM ET | 10-31-2007 | permalink | comments (81) | e-mail post

Tools of the Trade?

I'm home from the hospital, but I'm not able to get by entirely on my own. So they sent me home with some tools.

I remember when we got a walker for my father. He hated it. Hated everything about it. Perhaps what he hated most of all was the fact was that he needed it. It reminded him every day that, bit by bit, he was losing his independence.

Twenty years later, I have a walker. And I need it. I use it to stand up. I use it to get around the house. I use it to feel just a little more confident when I'm walking.

But maybe I'm saying a little bit more than that. Maybe, by accepting the walker, I'm saying I recognize that I need help. I cannot do this alone. I couldn't get through a single day of it alone.

For so many years, I remembered my father's reaction to his walker. I guess I dreaded the day when I might be in the same position. Now that I'm here, I'm glad they make them. And the last thing I worry about is my pride.

I have things to do. And the walker is a tool that helps me do them.

Leroy Sievers

7:39 AM ET | 10-30-2007 | permalink | comments (109) | e-mail post

Finding the Strength to Get Through

I was prepared for the artificial vertebra. That's what the surgery was about.

But I don't think I was ready for the drains in my spine. Or the pump in my arm that fills my body with antibiotics.

I've said before that we can get through just about anything. I need that to be true. More true than anything I've said in a while.

In about 8 weeks I can have some doubt, but now I need all the strength I can find.

Leroy Sievers

7:30 AM ET | 10-29-2007 | permalink | comments (150) | e-mail post

Getting Back to Normal

No left hand activity. That's a new one. Sounds like something out of Star Wars, or maybe even Spartacus. I have a new left-hand pump for antibiotics and I can't do anything with my left arm. At least not until things get back to normal.

And when will that be? That's the question of the day. It could be as long as 8 weeks. Maybe a little shorter. There's no way to tell. We'll just wait and see how long it takes.

That's really the goal here -- just to get back to normal. But I have to tell you, most of these days, normal sure seems a long, long way away.

Leroy Sievers

7:13 AM ET | 10-26-2007 | permalink | comments (81) | e-mail post

The Little Things

It's the little things that mark the line between a good day and a bad.

I cleaned up today. That was good. Tomorrow I get a semi-permanent IV line because I have to be on antibacterials for weeks to come.

The thing that bums me out the most is that we can't have our traditional Halloween party. I know that's bad news.

Leroy Sievers

9:30 AM ET | 10-25-2007 | permalink | comments (66) | e-mail post

A Long Recovery Ahead

The last surgery is over. OK, I should know better than that. The latest surgery is over.

The doctors re-opened my spine and washed out the area where the infection had been. I have no idea what that actually means. It's hard not to picture some sort of dentist tool or waterpik or something. But they're happy. So I'm happy.

I had one night in the ICU and now I'm in a regular room. I've got a few more days here of recovery. It's amazing how fast your body can atrophy in the hospital. You strength can go so quickly. But within a week or so I'll be home, I hope, looking at a long recovery and about six or eight weeks of antibiotics.

It's funny how something like this can block out everything else. Before, I was worried about the tumors in my lower spine, and the new tiny tumors on my lungs. Those seem like the least of my concerns right now.

I've got a tough recovery ahead of me, and then I guess I'll get back to worrying about the things that seemed so large before. In the meantime, I'll keep taking my medicine, keep trying to get past the hospital food, and look forward to going home.

Leroy Sievers

7:40 AM ET | 10-24-2007 | permalink | comments (94) | e-mail post

Post-Surgery Update from Laurie

Laurie Singer, Leroy's partner, wrote this update on Monday night, after his surgery:

Leroy is surrounded by machines pumping a variety of medicines into his healing body.

He's in ICU now, after four hours of surgery. The neuro-spine surgeons went back to the place they had operated on a few weeks ago, to find the source of a nasty staph infection.

They went to work washing away the bugs, then seeded the area with antibiotics that will slowly be absorbed into Leroy's body to make sure those germs are killed.

Then the plastic surgeons moved in to work on Leroy's muscles, to shore-up his back.

And now he's resting ... with plenty of pain medicine to help him get through this first night. As I write this, his nurse just told me he's doing fine! She made it sound so easy ... but we all know differently.

I can't say thank you enough for all the prayers and good wishes.

Laurie

We will continue to post updates about Leroy's condition as frequently as possible.

Maeve McGoran

7:30 AM ET | 10-23-2007 | permalink | comments (106) | e-mail post

Another Afternoon in Surgery

Leroy's infection is proving difficult to treat. Over the weekend he moved from the local hospital back up to Johns Hopkins. His doctors have concluded that the infection is centered in his spine. So this afternoon, Leroy is having another spinal surgery so the doctors can clean out the original surgery site. He'll remain in the hospital for a few days after that.

Some of you have written in with concerns that Leroy's infection might be the drug-resistant MRSA strain that has been in the news lately. Leroy's doctors are confident that this is not MRSA.

The good news is that when I talked to Leroy this morning, he sounded great, really energetic and confident, and ready to knock out this bug.

Laurie asks for our thoughts and prayers for Leroy as he faces another surgery this afternoon.

Maeve McGoran

11:17 AM ET | 10-22-2007 | permalink | comments (124) | e-mail post

New Patterns, Different Challenges

I've fallen into a routine.

Blood tests. Vital signs. Nap. Wake up for more tests. Meals. Bleh. More tests. Panic when I realize I haven't written the blog yet.

Today I added something new. I tried to stand again. I could barely go 10 feet.

Where does humility fit into in my new routine?

Leroy Sievers

7:15 AM ET | 10-19-2007 | permalink | comments (112) | e-mail post

One of the Toughest Fights So Far

I've moved out of the ICU into a regular room. Another sign that I'm getting through this crisis.

I'm beginning to understand how serious it was. But my readings are getting better. And I'm starting to feel a little more human.

Funny, this has been one of the toughest fights so far. And I don't think I've used the word "cancer" in days.

Leroy Sievers

7:11 AM ET | 10-18-2007 | permalink | comments (75) | e-mail post

Good News, Bad News

Monday night was one of those endless hospital nights. You lie there for hours knowing you're not going to sleep. Just hoping for morning to come.

But a lot happened yesterday. Turns out I have a serious infection, a staph infection. That's what was causing all the trouble Sunday night. So I'll spend a couple more days in my hospital room.

There IS some good news. I got my staples out! And this time it really didn't hurt. Maybe that's some sort of omen?

Leroy Sievers

7:39 AM ET | 10-17-2007 | permalink | comments (73) | e-mail post

Update from Maeve

Leroy is back in the hospital for a few days. He came down with a high fever and Laurie brought him to the emergency room right away. It's not uncommon to develop an infection after major surgery, so Leroy is getting a full complement of antibiotics.

I talked to him last night, and he sounded remarkably upbeat under the circumstances -- though he's not happy about being back in the hospital, as you can imagine.

Leroy's not sure how soon he'll be ready to post again, but we'll keep you up to date until he is.

Maeve McGoran

7:02 AM ET | 10-16-2007 | permalink | comments (95) | e-mail post

Seeing Past the Blind Spot

It all changes when the pain comes. That's the major challenge I face right now. I have to admit, I'm a little surprised at how calmly I'm taking the rest of it.

If you had told me before the operation that I would come out of it with a stroke, I would have thought you were an idiot. And I would have expected that I would be totally crazed: constantly changing from one eye to another ... open ... close ... trying to discern some tiny clue that either there had been improvement, or that there had been no improvement at all.

But somehow, I've been able to keep a whole different attitude. The spot is there. I see bits of it -- or evidence of it -- constantly. It's in the lower third on the left side of my vision. But I've been able to sort of push it back in my mind. I'm learning to compensate, too. I'm learning new tricks.

Right after we found that I had a stroke, new doctors seemed to be constantly coming by to introduce themselves. I noticed a strange phenomenon: doctors would walk up to the side of my bed and say, "Hi, Leroy, I'm Doctor So-and-So." And then just stand there. The first couple of times it seemed to be a little awkward. Then I made a discovery: They were putting their right hand out to shake my hand, directly into the middle of the blind spot!

So now, when someone comes up, I make sure to sweep my eyes across 180 degrees to see if there's a hand out there to shake.

This whole time I have taken great solace in the idea that I don't look like a cancer patient. That's starting to change too. I think being able to say, "No, of course I can park on level five, row 72," was a cry of defiance to me. Well, again, defiance can sometimes come at too high a price. I'm sure that in the next week or two, I will get a handicapped parking sticker.

It's just a practical issue. So why does it feel like it's one more sign of how the beast has changed my life?

But I'm not done yet. Not by a long shot.

Leroy Sievers

7:59 AM ET | 10-15-2007 | permalink | comments (77) | e-mail post

Does Cancer Hurt?

The pain changes everything. It makes it hard to speak, difficult to concentrate, nearly impossible to stay human. It crowds every other kind of thought out of your brain.

Now, it's not like I wasn't warned. My doctors told me the recovery from the surgery would be long and difficult. And after all, I chose to do the surgery. But thinking about it ahead of time, and experiencing it for real, are two very different things.

About a year or so ago, when we first started the blog, someone asked if cancer hurts. I have to say that up until now I've been lucky. The pain I have felt has been the result of treatments and procedures. But that kind of pain is just as real and just as difficult. I know that so many of you are facing your own pain, physical or mental.

For some reason, the pain medications don't seem to be very effective for my pain. We're not sure why, but we're looking for new possibilities. Nighttime is the worst. Lying watching the minutes tick by. Hoping that when you finally do fall asleep, you'll wake up three or four days later and the pain will be gone. But, of course, that's not going to happen.

I know that what I'm going through now was worth it. I know that without this surgery I very likely would have died within a matter of months. So all I can do now is what all of you do. Fight like hell to get through the next day.

The answer to that old question, does cancer hurt? That's an easy one.

Yes.

Leroy Sievers

7:30 AM ET | 10-12-2007 | permalink | comments (122) | e-mail post

Waiting, Hoping for Healing

Well, where to begin? This is going to be short. I'm actually dictating it to Maeve, my editor. It's just too difficult to sit upright and type for any length of time. "Too difficult," of course, means: it hurts like hell.

The spinal surgery seems to have gone as well as anyone could have hoped. My surgeons are thrilled. AlI I have to do now is get through the recovery. In a few weeks, I hope, the pain will be just a memory. But right now, it is a part of every minute.

The stroke is a whole different issue. Who could have foreseen something like this? I have lost about one-third of the vision in each eye. Some doctors say it will come back, it will just take time. Others say it may not. There's no way to know. Nothing to do but wait.

If it doesn't come back, this will be the first time that my cancer will have truly changed my life. Up 'till now, I've been lucky.

I'm not a patient person. The pain makes me even less so. Right now, all I can do is wait for my body to try to heal itself.

Finally, let me say, all of your notes are a daily source of strength and inspiration.

Thank you.

Leroy Sievers

7:30 AM ET | 10-11-2007 | permalink | comments (165) | e-mail post

Returning Home

There's something about being home ...

The pain hurts a little less. Your hopes burn a little brighter. Life is possible again.

I'm home.

Leroy Sievers

7:13 AM ET | 10-10-2007 | permalink | comments (189) | e-mail post

Leroy's Back Home

Leroy has left the building! (The hospital, that is.) He was discharged today and is embarking on his recuperation at home -- weeks of resting up and healing from the surgery. He is planning to jump right back into the blog, though, and will have a new entry tomorrow. In the meantime, he asked me to pass along his thanks to all of you for your incredible support these last nine days.

Maeve McGoran

2:50 PM ET | 10- 9-2007 | permalink | comments (58) | e-mail post

Update from Laurie

Laurie Singer, Leroy's partner, sent this update on Monday:

Sneaky stuff, this cancer ... hits you when you're down. I'm not talking about what it does to the body ... I'm talking about what it does to the mind. It hits deepest in the spirit, when reserves are low. Leroy has been in the hospital for a week now with lots of ups and downs. The surgery seems to have worked.

This vision field problem -- depending on which doctor is talking to us -- could improve or not. NOT is not a happy thought. So today, Leroy will have more tests. He's walking down the hall now ... for a 6-foot-5-inch body with a long row of staples down his back, that is also not an easy task. So ... keep the good thoughts coming... Those positive vibes help more than you'll ever know.

Thank you.

Laurie

We will provide more updates on Leroy's condition as they become available.

Maeve McGoran

12:55 PM ET | 10- 8-2007 | permalink | comments (138) | e-mail post

Update from Ted Koppel

Ted Koppel, Leroy's colleague and longtime friend, sent this update about Leroy's condition on Friday:

Leroy's a big man. He doesn't tend to swear much; but a certain Anglo-Saxon profanity pretty much sums up how he's feeling these days.

I visited him at the hospital yesterday. We weren't able to spend a lot of time talking because when he wasn't being rolled down the hall for X-rays of his spine, one of the nurses was taking multiple blood samples, while a technician waited in the hallway to conduct yet another test.

The good news is that the spinal operation seems to have been a great success. Leroy has already been out of bed, putting weight on the spine; and the new construction is holding well.

The less good news is that he suffered a minor stroke during surgery. The impact is on his left eye. Leroy is experiencing a sort of tunnel vision. His peripheral sight to the left is gone. The doctors are not optimistic that it will come back.

Our friend has endured a lot over the last 22 months, but this one is hitting him hard. It means that he won't be able to drive. As many of you know, Leroy is a product of California and cars have been an important part of his life.

What he finds most difficult to handle, at the moment, is a sense that the downhill slide is gathering momentum and may not be stoppable. That's a natural fear and will, one of these days, happen. Still, Leroy stopped taking morphine for the pain and it's still only been five days since he underwent major surgery.

He's hurting but he's not quitting. Your support, as always, means a lot.

Ted Koppel

We will continue to post updates about Leroy's condition as they become available.

Maeve McGoran

3:00 PM ET | 10- 5-2007 | permalink | comments (146) | e-mail post

Update from Laurie

Laurie Singer, Leroy's partner, sent this update early Wednesday on his condition after surgery:

Well, it's been quite a ride these past couple of days. Leroy is sore ... really sore, and yes, he's hitting that little button on the pain medicine pump! It was a very long day on Monday, but when the doctor came into the waiting room to say it went well, all those hours seemed to wash away. Thank you to all of you for your prayers and good thoughts ... Leroy went into that O.R. with nothing but the best energy to get him through this ... keep it coming!

Thank you.

Laurie

We will provide more updates on Leroy's condition as they become available.

Maeve McGoran

9:52 AM ET | 10- 3-2007 | permalink | comments (153) | e-mail post

Update on Leroy's Surgery

Editor's Note: Leroy had his surgery Monday. He's very tired and we're not expecting him to post to the blog this week. We will update you as soon as we can. We will continue to post your comments in the meantime. So please feel free to send Leroy your messages.

Maeve McGoran

2:54 PM ET | 10- 2-2007 | permalink | comments (118) | e-mail post

Surgery Day

By the time you all read this or hear the podcast on Monday morning, I'll be in surgery. I have to be at the hospital at 5:30, which won't be much fun. This is going to be a long surgery -- about eight hours if all goes well. So it's good to get an early start. Have I mentioned before that I'm not a morning person? But I certainly hope my surgeons are. This will be a difficult operation, technically.

I should be asleep on the table by now. I've gotten pretty used to the hospital. I've had enough procedures and surgeries, so I pretty much know my way around. One continuing problem is my size. I've already had to ask for an extension on the bed in my room. When I had my first surgery back in 2001, I remember sitting on the table in the OR as they began to pump drugs into me. The last thing I heard, right before everything went black, was, "What are we going to do with his feet?" I guess I was too long for the operating table. To this day, I have no idea what they did with my feet.

I will probably stay in the hospital until the end of the week. It's funny, you can get so used to the tiny world of the ward that you're on. The first day or so, my bed will be my world. Then, once I can walk, my horizons will expand to include a corridor or two. It's always a shock, at least to me, when you get out of the hospital and back into the real world. Just being able to breathe fresh air is a pleasure. But I'm getting ahead of myself.

I know the basics of what my doctors are going to do. I'm not one of those people who needs, or wants, to know all the details. I'm more interested in, What it will do? And, How I will feel when it's over? Will my life be changed? What will the recovery be like? All those questions will be answered in time.

In the meantime, my job is to lie on that table and let the surgeons work their magic. And what they do truly is magic. I'll try to get some updates posted on the blog this week, but we'll have to see how that goes. I'll talk to you later.

Leroy Sievers

7:08 AM ET | 10- 1-2007 | permalink | comments (94) | e-mail post