'Buy the Ticket, Take the Ride'

So we're off into the uncharted territory of a third year of the My Cancer blog.

Once we cross over into Cancer World, we all become strangers in a strange land. What to expect, what to hope for, what to fear -- none of those are clear right now.

I have a confession to make.

I think sometimes that I am more positive in the blog, in writing to all of you, than I feel for myself. Maybe I'm just trying to convince myself that things are better than I think.

Over the last two years, we've clearly learned that it is possible to live with cancer. I've learned that I am stronger than I ever thought, physically and emotionally. There are times when I get frustrated or angry, but I know now that those times will pass.

So where will this road take us now? Where will my road take me?

It's too simple to say we'll just have to wait and see. But there is still mystery here. Early on in the blog, I used a quote from Hunter Thompson: "You buy the ticket, you take the ride."

That somehow seems like a good place to start year three.

The ride has lasted longer than I expected, but I have my ticket. I'm committed to ride.

8:06 AM ET | 06-30-2008 | permalink

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We're A Community ... A Family

I hope that you've had a chance to look at the photo gallery on the blog site. Beth Novey put that together, and I think it's a truly amazing piece of work.

It's not so much the words, although as usual, you all wrote truly moving and profound messages.

No, I'm talking about the pictures. It's great to finally be able to put faces to some of the names that have become so familiar. Others are new, but strangers no more.

There are lots of smiles, more than I might have expected. But more than anything else, when I look at all the pictures together, I realize that we are a community, a family.

And I am reminded again that my membership in this club, something I never would have wanted, is what has kept me alive.

7:00 AM ET | 06-27-2008 | permalink

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'My Cancer...'

Hi all,

I'm Beth -- I help produce Leroy's blog here at NPR.org.

Several weeks ago Leroy asked you to finish the sentence: "My cancer..." Hundreds of comments poured in. We were so impressed with the response we decided to make a sampling of your comments into a photo gallery:

 

We are so sorry that we couldn't include more of your thoughtful, sad, and witty responses in this gallery. You can read all 350+ "My Cancer..." comments here.

It's been a wonderful treat these last few weeks to finally be able to SEE you! Thank you so much for your poignant comments, your beautiful photos, and your undying support for Leroy and each other.

7:11 AM ET | 06-26-2008 | permalink

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My Cancer, 2 Years Later

Two years ago, it seemed like a pretty simple idea. Write something each day about cancer. So we started the My Cancer blog. I don't think any of us really knew what to expect.

After all, I wasn't even supposed to be around to work on it. Six months earlier, doctors had found a brain tumor. A doctor looked me in the eye and said three months, maybe six.

Well, two years later, I'm still here. That first tumor is gone. But it's been replaced by others.

And the blog has taken on a life of its own. It has become a place of refuge, a rest stop on the long, difficult road that is cancer.

We have made friends and lost friends on the blog. We have learned things from each other, things we never thought we'd need to know.

With My Cancer turning two years old, I had expected to write a commentary that would be a celebration. But life in cancer world doesn't always go the way we expect.

The cancer attacked my spine. Just like those old advertisements, I fell but couldn't get up.

That meant surgery, another surgery, an infection that almost killed me, and one more surgery after that.

We finally thought the battle over my spine was winding down. It was time for routine scans. Time to see what had happened while we were fixated on my spine.

For some reason, I felt optimistic.

I was wrong.

My last scans showed that my cancer has exploded. New tumors in my brain, liver, lungs, bones. Well, you get the idea.

So I've been going through the process of, quote, getting my affairs in order. Doing all the paperwork, all the legal things you need to do.

No one really knows what the next step will be ... how my disease will play out. But we know it's serious.

I had radiation on my brain and my pelvis for pain relief. That's about all I can do. From here on, we're gong to be worried about comfort, about relieving the worst side effects.

So this anniversary has been pretty stressful. But if I've learned anything over the last two years, it's that life with cancer is tough.

I've learned something far more important, too. No matter what happens, we're all in this together.

None of us walk this road alone.

7:00 AM ET | 06-26-2008 | permalink

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Losing Control Yet Not Giving Up

How will this go? How do things play out from here? What happens next?

I don't have the answers to any of those questions right now. I'm sure the answers will become apparent at some point, but we're not there yet.

I do see changes in my body. I'm not as strong as I was a few weeks ago, or a few weeks before that. I need more help doing some things.

Getting out of a certain chair, for instance. I used to get in and out of it without really thinking. Well, those days are over. I need to plan ahead if I can, make sure there's someone else around to help lift me up onto my feet.

It's just another little loss of control. A loss of freedom that the cancer has caused. And I hate it.

It scares me, too. How far will it go? How much of my strength will the cancer steal? Will I end up bed-ridden?

And always, in the back of my mind is the fear of falling again. I don't think I'll ever forget what that was like. Falling and not being able to get back up. Even though it happened months ago, the memory is still fresh.

On the other hand, I have to keep going. I have to move around, go from chair to chair. I'm not bed-ridden now, and I can't let myself give up.

So as it gets harder and harder to do the same things, I think all I can do is work a little harder to do them.

And make the cancer work harder to try and stop me.

7:00 AM ET | 06-25-2008 | permalink

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How Will People Remember You?

I had started to write about a whole different subject this afternoon. Quite honestly, I was struggling with finding a topic.

But a friend of mine came by to drop something off. We started talking, and somehow came back to a subject that we've talked about here before.

It's a question, actually. And I think it's one that is worth asking periodically. Or at least thinking about every now and then. So I put it to all of you:

How do you want to be remembered? What mark do you hope to leave on the world?

7:00 AM ET | 06-24-2008 | permalink

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Patience and Pain

Did it work? Did the radiation I had last week do what it was supposed to do? I don't know. I can't tell. At least, not yet.

The radiation on my brain is a long-term thing. Our goal there was to slow down any tumor growth and prevent any new problems. If there are side effects, they'd show up in about three years or so. Needless to say, not something I need to worry about.

My pelvis, and the pain there, is still the main thing I have to worry about. The hope was that the radiation would help heal some of the fractures caused by the cancer, and kill some nerve cells to lessen the pain.

Honestly, I can't tell if it is working or not. I'm trying to be patient, because it was supposed to take a couple of days before any effect would be noticeable. But I still have pain there as I write this. The same? More? Less? I honestly can't tell.

I guess patience really is the key to this. Whatever improvement I get,
I will be grateful for. If things stay the same as they were -- well, I haven't lost anything that way, either.

That's the way it goes in Cancer World. You take your best shot, hope for good results, and live with what happens.

I can do that.

7:59 AM ET | 06-23-2008 | permalink

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What Do We Say To Each Other?

What do I say to you?

I was talking with one of my best friends the other day. He wants, and gets, the unvarnished truth from me. We were talking about my latest scans. The bad ones.

So again, that question. What do I say to you? I didn't have an answer.

Actually, that's not true. The answer is pretty basic. Say the things you would normally say to me. Let's talk about work, movies, politics, the sad state of television today.

I have been thinking about the same question myself these days. What do I say to my friends? When the time comes, how do I say goodbye? Do I need to say anything, or can I just assume that my loved ones know my thoughts?

What do I say?

7:00 AM ET | 06-20-2008 | permalink

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Radiation and a Nap

We left for the hospital before 7 yesterday. 7 AM.

We got home about 8. 8 PM.

It was a long, difficult day. Pretty painful at times. But at the end of this day, my hips have been treated, which we hope will bring some relief after months of pain. And they radiated the most worrisome of the tumors in my brain. So we got a lot done, after all.

But I am beat, so I am going to ask your forgivess for not writing more.

I need a nap.

8:11 AM ET | 06-19-2008 | permalink

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Hospital Day

Today is another full day at the hospital. I am going to have radiation on my pelvis where I have been having so much pain. I hope it will help.

We will also scan my brain to get ready for radiation there, too. But we haven't decided whether to go ahead with it or not. That decision will have to be made soon.

I have been through so many days like this that they have become routine.

That doesn't mean it will be easy. But I hope there won't be any new surprises. I could use a "no surprise" day.

6:59 AM ET | 06-18-2008 | permalink

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The Vise That Is Stress

It's not the pain. It's not the fear, the uncertainty, or the anger.

It's the stress that's the toughest to deal with sometimes.

You can take medication for the pain. You can talk to friends about the fear, remind yourself that you're not alone. When the anger flares, you have to remind yourself that there's really no one to be angry at.

It doesn't mean that all those feelings aren't valid and strong. They are. But what they all add up to is stress.

The pressure of coping with everything that the cancer brings with it can feel like a vise. And I don't think there's any easy answer as to how to deal with the stress. It's not just going to go away, as much as we would like that to happen.

It affects everyone, not just the person who has cancer. The caregivers, family members, doctors and nurses. They all can fall victim to it, too.

What would help would be some sort of break. A short recess that would allow everyone just to take a deep breath. But that's unlikely, too.

I think all we can do is try to let the stress wash over us, remind ourselves that we all feel it, and not let ourselves make things more difficult than they already are.

We walk a hard road.

7:00 AM ET | 06-17-2008 | permalink

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Birthday Cakes and Icing

Today is my birthday. I'm 53.

I remember as a kid thinking that 40 was ancient. Now, 53 seems pretty young.

We talked the other day about setting goals, wanting to live to see a particular event. I have to be honest, my 53rd birthday really didn't fall into that category. I took it for granted. And I made it.

A little battered, a little beaten. But still standing.

Just a quick mention here and then I'll move on. One of the things that does keep me going, that I look forward to every year, is the huge gobs of icing on the birthday cake from the grocery store. I love that stuff.

Things have changed over the last couple of days. Changed dramatically.

No one has said it, at least not out loud, but let's be honest. The odds of my celebrating my 54th birthday aren't great.

There's certainly a chance. We never really know what's going to happen. But it doesn't look so good.

I've thought a lot about this, and in the end, I'm at peace with it.

I know the days ahead are going to be difficult, for me and for others. But things will play out as they are supposed to.

I have to believe that.

In the meantime, there's cake, and more importantly, icing out in the kitchen. And it's calling my name.

8:06 AM ET | 06-16-2008 | permalink

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Reasons to Live

It may sound silly now, but for me, it was the final Harry Potter book.

By God, I was going to stay alive long enough to find out what happened.

I think that's pretty common, actually. People set goals for themselves. A birthday, family occasion, holiday, whatever. Some event that they are going to fight to live long enough to enjoy.

It could be a book, like it was for me. A movie, TV show cliffhanger, whatever.

All of this raises the question -- what keeps us alive?

It's not like we're all given the choice of what we want to live to see. If we were, most of us would probably pick something like "Indiana Jones, Chapter 36".

But I do think that willpower plays a huge part. I don't think it's a coincidence that so many people live long enough to see that graduation or wedding. I also don't think that it's a coincidence that once those deadlines have been reached, people often pass away. The world is still a mysterious place.

So what's going to keep me alive? What event on my calendar am I going to mark in red?

I don't know yet, but I'm looking.

Any good movies coming up?

7:00 AM ET | 06-13-2008 | permalink

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Difficult Conversations and Finding Peace

"Getting your affairs in order."

That's one of those phrases you hear, but never think what it really means. At least I had never really thought much about it. We'd done most of the basics when I first faced cancer back in 2001. But there's still a lot to do.

I have no idea how much time I have left. Weeks, months -- we don't know. But it makes sense to take care of everything now so we don't need to worry later.

All the business and legal stuff is pretty straightforward. It's the personal part that's tougher. Much tougher.

Over the last few days, I've had to tell friends, family, and loved ones what the situation is. Those are difficult and painful conversations to have. I'll admit that I haven't been able to make it through all those conversations without breaking down. I don't want to be melodramatic. I don't know that this is the time to start saying my goodbyes. It doesn't feel like the right time for that. But, again, I don't know.

And maybe it's good to be busy, to have a lot of things to take care of. At least for a short time, this will all keep me occupied. Keep me from retreating into sadness or depression.

Writing the blog, and sharing with all of you, helps tremendously. It forces me to stop, take a deep breath, and gather my thoughts. And every one of you gives me something to think about.

But the most important thing I need to do is to remind myself to spend a little time finding the peace I need so badly these days.

7:04 AM ET | 06-12-2008 | permalink

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Not Alone On This Road

Fight. Wrestle. Confront. Cope. Endure.

Whatever words we find to describe how we deal with our cancer, there's one overriding truth. We don't do it alone.

It may feel that way sometimes, especially in the dark hours of the night when the silence closes in. But that's just a trick of the night.

As we walk on this difficult road, if we listen carefully, we can hear the footsteps of those who walk with us. Our fellow patients, our friends, and our loved ones, who carry an especially heavy burden.

In these difficult days, Laurie wanted to reach out to all of you with this note:

No one has lost a battle here.

If anything has happened in these past couple of years on this blog, it's that we've all learned how to face life head-on. Not death.

And Leroy's been our pied piper. I'm not sure he even knew where this trek would take him, but we've followed him because of his strength and courage and willingness to get off the beaten path and make a new one.

Most of us are not that brave. We need the Leroys in our lives to show us.

These next few weeks, months, whatever it turns out to be, will be no different than when this blog began two years ago.

We live life here. We don't sit and wait for death.

There will be no battle lost.
- Laurie

7:00 AM ET | 06-11-2008 | permalink

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An Emotional Time

First, I want to thank you all for the outpouring of support. It means so much.

I don't really know what to say today. I will admit that I am a little overwhelmed.

I am getting busy. It's time to take the phrase "getting your affairs in order" seriously. There have been difficult conversations, with more to come.

I find that I am more emotional than usual, and I wonder if that's because of the situation or the brain tumors. Seriously.

I know that I have a difficult road ahead of me. I just have to keep putting one foot in front of the other.

6:45 AM ET | 06-10-2008 | permalink

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The Disease Has Exploded

We try to steel ourselves to be ready for bad news. We should be pretty good at it by now, because so much of the news in cancer world is bad. Still, when it comes, it can hit like a sledgehammer.

Last Friday was scan day for me. It was the first time we were going to look around in a while. We had been concentrating on my spine, sort of ignoring whatever else might be going on.

Well, the news wasn't good. And I wasn't prepared.

I have three new tumors in my brain. The cancer has fractured part of my pelvic bone, which would explain the pain I've felt for so long. New tumors in my liver, which had been clear up until now. Lungs, ribs, shoulder blade.

Basically the disease has exploded.

There are some things we can do. Some things we'll need to do. The pelvis and brain are probably at the top of the list. But there's nothing to be done about a lot of the disease.

The total burden of the cancer on my body is pretty heavy now. I have some serious decisions to make.

Overall, things don't look so good. But I've held off this disease for two- and-a-half years already.

I still have some fight left in me.

7:05 AM ET | 06- 9-2008 | permalink

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Scan Day, Yet Again

Back into the fight.

For the last five or six months, we've been concentrating on my spine, trying to repair the damage done by the cancer. I still have a long way to go on that front. But it seemed like the cancer itself took a back seat for a while. We haven't been attacking it, just trying to undo its effects.

Today we're going to concentrate on just the cancer. I'm going to have a CT scan of my chest and abdomen. We know there are small tumors in my lungs.

They've been there for a while, but they've been too small to worry about. Well, it's probably time to worry about them now.

I'm also going to have a brain MRI. That's just something we do periodically to make sure nothing has come back in my head.

If we do find something, I'm not sure what the next step will be. I've done chemo, radiation, RFA, chryoablation, vertebroplasty, corepectomy, and I'm sure some others that I've forgotten.

I don't think there are a lot of options left. But I'm getting ahead of myself. Today is another scan day. What we do next will be determined by what we see.

We've all been through this before. All you can do is be patient and wait for the results.

7:13 AM ET | 06- 6-2008 | permalink

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Ever Tempted to Play the Cancer Card?

I'm sitting in a dark house writing this on my phone. A huge storm roared through and knocked out the power on my street. They still have electricity one street over. I can see the lights, but that doesn't help much.

I don't think I need to call the power company. I'm sure they already know. But in these situations, it's always tempting to play the cancer card. Call the power company and when they say it could be hours say, "But I have cancer."

I wonder what would happen. I would never do that ... but I am curious.

7:10 AM ET | 06- 5-2008 | permalink

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Tricks of the Trade

Frozen lima beans are my best friends. Baby lima beans, to be specific.

I use them instead of ice packs to try to bring some relief to the muscles or nerve pain that I feel. They work great, actually, although the bags are getting a little worn. I do worry about some sort of bean accident.

They are just another trick that we've learned. Just another mechanism to help make the treatment easier. It's like stashing spearmint gum away when you're having chemo. The spearmint really helped with nausea, so I hid packs of it all over the place.

When I spent time in a wheelchair following my spinal surgery, I got pretty good at moving from chair to bed, and so on. The right height is the key to making that work.

It's all about learning to live in Cancer World. These little tricks may be minimal, but they can make all the difference. Anything to make the day a little easier, a little more tolerable.

So yeah, I sit with frozen produce in my lap. I really don't like lima beans, so I might as well get some use out of them.

7:37 AM ET | 06- 4-2008 | permalink

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Are We Cured Yet?

There's a lot of talk about cancer these days. There's a big convention in Chicago, lots of stories coming out of that. The networks are doing individual stories and special series. The local news stations seem to be reporting on cancer every night, too.

The stories always seem to tease the possibility of a new breakthrough. But that big step we're all waiting for, the cure, always seems tantalizingly out of reach.

There are lots of reports on new drugs, or old drugs used in new ways, or new and old drugs combined in new ways. But the number of people in the studies always seems very small, and somewhere in any article you can always find the line, "Several more years of study will be required."

So will we ever open a newspaper to see a headline that says, "Get down to the hospital right away because the cure is ready and waiting?"

I wonder. It's true great advances have been made. A lot of us are living proof of that. But, let's face it ... we want more.

We want to be cured.

We want to be able to say, "I HAD cancer, but it's gone now."

Now, that does happen sometimes, but not often enough. We're fighting for more time. No one really thinks about a cure.

Well, that's not quite true. Every once in a while I let my imagination run, and then there is a cure and we all survive.

Wouldn't that be something?

7:05 AM ET | 06- 3-2008 | permalink

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Put On a Happy Face?

There was an interesting article in The New York Times yesterday. It was about the pressure on cancer patients to present a positive face to the world. Give the universe a thumbs up rather than your middle finger. A lot of us feel we need to appear upbeat, courageous, positive, even when we don't feel any of those emotions.

Quite honestly, there are times that I will write something in this blog that is more positive than I really feel that day.

I think we do this to reassure our loved ones, and maybe even ourselves. We hear a lot about how important a positive outlook is. It almost makes you afraid to acknowledge a bad day for fear that it somehow will set you back.

But one of the things I've stressed here from the beginning is honesty -- with ourselves, with those close to us, with our doctors, with each other. I think being honest is far more important than trying to present a positive face to the world.

Now, I'm not suggesting that we wallow in depression or anger. I think a positive outlook is important. I just think we shouldn't pressure ourselves to be upbeat if that's not the way we feel.

Living with cancer, you still have good days and bad. Just like everyone else.

7:13 AM ET | 06- 2-2008 | permalink

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