Searching in the Dark

I'm sleeping better these days. I'm not sure why, but I'm certainly not complaining. For a long time it seemed that I was awake all night -- every night. I might have grabbed an hour here or an hour there, but not much more. I had watched every movie my cable system had to offer. I used to dread the night.

It's in those dark hours that you are truly left alone with your thoughts. There's no fooling around then, no kidding yourself. That's the time for honesty. I don't spend that time feeling sorry for myself. I'm way past that. I don't ask, "Why me?" That's been asked and answered. No, I listen to the house, the noises it makes. I listen to the world outside, wind or rain or calm. And I wonder what's going to happen.

I know what my doctors say. I know what they expect to happen. I know what could happen, the best and worst case scenarios. But as I try to look ahead into my future, I can't really see anything that will give me a clue. It's like the old eight balls always seemed to say: Answer hazy, ask again later.

Maybe that's why I'm sleeping better. I don't know what exactly I should be worrying about, so I might as well sleep. The future will reveal itself when it's time. I guess I can wait.

Leroy Sievers

7:16 AM ET | 04-30-2008 | permalink | comments (45) | e-mail post

Finish This Sentence: My Cancer ...

There's no question that my cancer changed my life. It changed everything. It changed my future, it changed my present. It changed my body, it changed my mind.

The things that changed for the worse are obvious. Did it change anything for the better? I think that it made me wiser. Taught me something that I needed to know.

I write every day about my cancer. About my life with the Beast. You all, in your comments, tell me about your cancer and how it has changed your lives. But I want to learn more. Have I missed something? A lesson that the disease was trying to pass on? Is there more that I need to know about how to live with this disease?

So I have a favor to ask of all of you. To finish one sentence. And I hope, by sharing our answers, we'll all learn from each other. So here goes:

My cancer...

Leroy Sievers

7:07 AM ET | 04-29-2008 | permalink | comments (379) | e-mail post

Time for a Trade-In?

Sometimes I think I just need a new body. That might be the easiest solution. I've certainly beaten up this body.

Didn't that happen on the old Star Trek a lot? Aliens would need new bodies so they'd take or borrow the bodies of Capt. Kirk and his pals? Now, my body has been through a lot, and it's actually held up surprisingly well. But wouldn't it be great to start with a brand new one?

A new body wouldn't have as many metal parts as my current one does. A good part of my spine is metal, not to mention the metal plate in my skull from the brain surgery. The doctors totally rearranged the muscles in my back when they did the spinal surgeries. A new body would follow the original design.

Maybe most important, a new body would let me start all over with new therapies. I wouldn't have crossed the radiation tolerance level already. No scar tissue in my lungs from Radio Frequency Ablation. No glue injected into my vertebrae.

And a new body wouldn't suffer from all the aches and pains, big and small, that I have now. Of course, while I'm at it, my new body would have six-pack abs and a full head of hair.

Oh well, it's fun to think about. But this body is the one I have. It's gotten me this far. I don't think it would be right to change now.

Leroy Sievers

7:05 AM ET | 04-28-2008 | permalink | comments (33) | e-mail post

What Makes a Good Day?

Just another day. Back before I got sick, the days seemed to just blur together for the most part. I was working 15 hours a day, doing one broadcast after another. I'm not sure if I ever really took the time to ask myself if today was a good day.

I think I look at things differently now. We've talked about how cancer makes us realize how precious each day can be. How important it is to appreciate them all.

That doesn't mean that every day is going to be a good day. And when we say we try to live each day to the fullest, that can mean just about anything. When I was on chemo, sometimes just making it to the couch was enough to make it a good day.

So I guess today was a good day. I didn't do anything profound. Physical therapy this morning, and I'm not too sore this afternoon, so that's good. I struggle sometimes with the blog. I feel that I need to say something each day, something worthwhile. But sometimes all I really have to say is, "Hey, made it through another day."

That's not very profound or even thoughtful, but it is the overriding truth of the day. Today belonged to me, not to the Beast. Today is my day.

Leroy 1. Cancer 0.

Leroy Sievers

7:25 AM ET | 04-25-2008 | permalink | comments (78) | e-mail post

You Going to Eat That?

Food.

It seems like I can't get enough. It's mostly the steroids I've been taking. I seem to be hungry all the time. Or maybe my old appetite is just now coming back. I've lost a lot of weight in the last few months. About 50 pounds. My doctors were getting a little concerned. They put me on the steroids to lessen some of the inflammation. The desire to eat everything in sight is just a lucky side effect.

I realize now that most of my clothes don't fit any more. The other day I put on a pair of shorts, stood up, and the shorts promptly fell down around my ankles. If, or when, I get back to the point of living a more normal life, I guess I'll have to figure out what to do about my wardrobe malfunctions. These days I go to the hospital, or the doctor's, or therapy. So I can get by with sweats or shorts. God help me if I have to wear a suit any time soon.

But I have to admit that the clothes thing weighs on my mind in a different way, too. I miss just dressing normally. It's another small sign of how my normal has changed. There's nothing stopping me from wearing my regular clothes. Except for that whole "pants falling down around the ankles" thing.

In the meantime, I'm just about done with the steroids. I'm assuming that once I stop taking them, my appetite will go back to normal. But in the meantime, this may be a good time for a snack. I wonder what's in the kitchen.

Leroy Sievers

7:13 AM ET | 04-24-2008 | permalink | comments (46) | e-mail post

Is This My New Normal?

I'm going to get better. I think that's really the dream that keeps us all going.

Somehow, some way, we're going to get better. We're going to heal. Let's get past the cold hard reality right now. There will come a time for all of us when it's clear the journey is coming to an end. That we're not going to get better. But that day hasn't come yet.

So in the meantime, I sit here thinking that the discomfort will pass. I do feel better than I did a few days ago. I think my body is shaking off the effects of the radiation. But how much better will I feel? Back to the old normal? Or is this my normal?

It's clear that some things have changed forever. My therapist has set out the goal of getting rid of the walker, at least in most circumstances. But I don't think I'll ever be able to be active, to move, the way I used to. That normal is gone. And I can live with that. After all, I don't have a lot of choice.

But whether or not I get better over the long term, whether or not we are able to knock the cancer down a little, I'm concentrating now on just feeling better. That would change everything.

Leroy Sievers

7:15 AM ET | 04-23-2008 | permalink | comments (39) | e-mail post

Three Springs and Counting

I was diagnosed in the depths of winter. It was early December. The first prognosis was that I wouldn't survive the spring.

Well, I'm looking out the window as I write this at my third spring since then. The trees have finally exploded, turning green almost overnight. It was a beautiful year for the cherry blossoms and dogwoods. The streets were a riot of pink and red and white flowers.

So what should I make of surviving another season? I pretty much missed most of this past winter. I spent a lot of it in the hospital. Given a choice, I'll take spring any day.

But it does make me conscious of the passing of time, of the turning of the wheel. Time, after all, is precious to cancer patients. It's our currency. This procedure will buy you more time. What more do we need to hear?

Except, of course, there's the whole issue of the quality of the time we buy. But let's save that for another day.

All I want to say today is, Happy Spring. We made it.

Leroy Sievers

7:14 AM ET | 04-22-2008 | permalink | comments (67) | e-mail post

Waiting for an Answer

Did it work?

Did the radiation kill, or at least slow down, the cancer? I haven't spent a lot of time thinking about that, for some reason. I'm been distracted by how I feel. And I guess we won't know the answer for a while. Once you've had radiation, you have to wait a while before having scans, because the effects of the radiation make it tough to read the pictures. For me, it's even more complicated. I have so much metal in and around my spine now that it will be impossible to see anything meaningful on traditional scans.

I could have another one of the spinal tap scans, where they inject the contrast dye into the spinal fluid, but neither my doctors nor I think that is a good idea. It's just not worth the risk and discomfort. So the only thing we can really do is wait and watch until I become "symptomatic." That's a good word. What that means is that we have to wait until something goes wrong, and then we'll know.

In this case, if the cancer comes back and attacks my spine, then "something going wrong" would probably mean another fall, and all that goes with it. Not something I am looking forward to. But it's also not something that I can worry about every day. That would be just as paralyzing. I need to concentrate on rebuilding my strength, and rebuilding my life.

So I guess the answer to my original question is, "I hope so, at least for a little while." That may be unsatisfying, but it will just have to do. I think it's the only answer I've got right now.

Leroy Sievers

9:09 AM ET | 04-21-2008 | permalink | comments (30) | e-mail post

Building Strength and Optimism

I guess I don't get to feel sorry for myself after all. Darn.

I went back to physical therapy today. I went back to work. I know that the radiation has weakened me. I feel it when I stand, I feel it when one of my legs buckles when I'm going down the stairs. That's scary. My memory of falling is still pretty fresh. So I've been a little depressed about losing some of the progress made.

Well, I guess I didn't have to worry so much. My therapist worked me pretty hard today. She's good at that. But I did OK. It turns out that I'm not as weak as I thought. In what has been a pretty difficult stretch, that's very welcome news.

That doesn't mean that I don't feel the effects. I do. I'm a little stiff, a little sore. Ice packs help some, and I'm going for another one as soon as I finish writing.

I know that I have a long, long way to go. My hope is to get to the point where I don't need to use the walker all the time, where I don't have to think before I stand, where I don't need to plan out my route ahead of time.

After today's session, there's optimism mixed in with the muscle stiffness. This may work out after all.

Leroy Sievers

7:13 AM ET | 04-18-2008 | permalink | comments (47) | e-mail post

Too Much to Ask?

What I need most now is something that I have very little of. Patience.

I have just finished the radiation. I know that it will be weeks before I start to feel like myself. I still feel the effects from my last surgery, and that was months ago. But that doesn't stop me from wanting to feel better right now. Immediately.

Is that too much to ask? Well, yes, it is. We put our bodies through a lot. I'm surprised they can heal at all any more. It just takes time.

I keep telling myself that, but I don't seem to be listening.

So I continue to try to find relief. Ice packs, then a heating pad, then the ice packs again. I'm trying to wean myself off some of the medications. And I think that an occasional glass of wine is better for my soul than a handful of pain pills.

I wonder what it will be like to actually feel better. This round of surgery and complications began last October. So it's been a while since I felt pretty good. And of course, some of these side effects may not go away at all. The neuropathy, the tingling in my legs and feet, may be permanent. I have to come to grips with that possibility too.

Like I said, I need to be patient. And that may be one of the biggest challenges yet.

Leroy Sievers

7:15 AM ET | 04-17-2008 | permalink | comments (38) | e-mail post

How Much Time Has Been Bought?

So now what? Where do I go from here? When I've had previous treatments, whatever they were, I think I always held the hope that the cancer wouldn't come back, at least not in whatever area we had treated. That was true at least some of the time, and those small victories were enough to keep the optimism alive.

Now we've radiated my spine. I think I'm done with radiation there, I've actually exceeded what is considered the safest tolerance level. So what happens if it comes back? When it comes back? That's the better question because I think we all, my doctors and I, expect it to come back. So that optimism becomes a little trickier to hold on to. We've bought time, but how much?

If it does come back, my doctors have said they still have a few tricks left. But sometimes I start to feel like the little Dutch boy when the eleventh leak popped open in the dike. How many holes can you plug? The answer is that you have to believe, you have to live, as if you plugged them all. If I were to truly believe that the radiation probably didn't work, then I would have gone through it for nothing. I can't just sit around waiting for the next bit of bad news. I have to believe that we won this round.

And if it turns out that we didn't? If it comes back? Well, I've been through that before. Most of us have. We'll just have to deal with it then. I'm going to try not to worry about that now. Besides, maybe we really did win this round. That's something to think about.

Leroy Sievers

7:24 AM ET | 04-16-2008 | permalink | comments (53) | e-mail post

A True Goodbye

I hit the bell today in the hospital corridor. It's one of those chimes made out of an oxygen bottle or something like that, and when you whack it with a mallet, it gives out a nice clear tone. My newest friends, who were standing with me, all cheered, and you could hear applause coming from the waiting rooms. That's what you do when you've completed your last radiation treatment. You hit the bell.

It had been a long day. We arrived to find that the machine was down, and it would be five hours before I would finally lie down on that table for the last time. But in the last couple of weeks we all became friends as we waited together each day, so the time actually passed pretty quickly. Some of the other patients are getting chemo at the same time as radiation. That's a tough load. They went off to chemo and then made their way back to radiation, each now with the telltale blue tape around a wrist.

As I shook hands with them and said goodbye, I said what cancer patients always say to each other in those situations: "Good luck. I hope I don't see you again." That's not being rude. It's saying that you hope they make it, that there won't be more treatment, that we won't run into each other waiting for some other form of therapy.

And it's true. I genuinely like the members of our temporary group. I will miss them. But I truly hope we never see each other again.

Leroy Sievers

7:30 AM ET | 04-15-2008 | permalink | comments (55) | e-mail post

Cancer Has Truly Changed My Life

I've been away from Morning Edition for a while ... six months or so. After two years, my cancer decided to get serious. It attacked my spine. For those first two years, I was able to hold on to a fairly normal lifestyle. Even when chemo made me sick, or procedures made me sore, I could still do most of the things I had always done.

That changed when I had to have major surgery. The doctors removed a vertebra that had been attacked by the cancer, and replaced it with an artificial one. Nine hours on the operating table caused a stroke that affected my vision in one eye.

I got a staph infection during the operation, which almost killed me. So the doctors had to do spinal surgery all over again, to clean out the infection.

I was home recovering when the cancer struck at my spine again. This time, I fell. And like that old commercial said, I couldn't get up. So, spinal surgery ... for the third time. Now, I'm home again, gong through rehab so I can get around without a walker sometime soon.

It's been rough. I feel pretty beat up. I've had some tough times before, but this has been different. For the first time, the cancer has truly changed my life. I probably won't drive again. I won't be able to be as active as I was. And to be honest, it makes me mad.

We've hit the cancer with chemo, radiation, heat, cold, hot glue and surgery ... and it still keeps coming back.

I know that in the end, it will most likely get me. But at least I know that I've made it work. And there's some satisfaction in that.

Leroy Sievers

6:30 AM ET | 04-14-2008 | permalink | comments (75) | e-mail post

Comparing Notes

As soon as we got there, it was clear it was going to be one of those days. Nothing was working. The computers were down, the radiation and X-ray machines were down, there was talk that the power was down some places, too. And this was true all over the hospital. The waiting areas were packed and the patients were trading rumors. So far, not a single patient had been treated.

This happens every now and then, and all you can do is be patient, no pun intended. In the meantime, a funny thing happens. It's sort of like what's probably going on at the airports where all those flights have been canceled this week and thousands have been stranded. Barriers go down, strangers become friends.

For cancer patients, I think a lot of those barriers have been dropped long before something like this happens. They lose the reluctance to talk about some of the most private or intimate things, particularly their lives, and deaths.

So we all compared notes on where we were in the treatment regimen. Which doctors were the best. A man who was there for his first treatment had a lot of questions, and the veterans tried to help him out. We talked about symptoms, about the annoyances of drug pumps when they're attached to your body, about my pet peeve -- the lack of padding on the machine table.

And then there was a glimmer of good news. The machines were back up and being tested. Pretty soon, they were up and working. And a wait that we had expected to be three or four hours turned out to be just about one hour. The staff was really working hard to catch up and get us through our sessions.

Our instant friendships won't survive much longer. I only have two more treatments, and then probably won't see any of my new friends again, except by chance. One by one, everyone will finish their treatments and move on. The first-timer will become the veteran. He'll be the one sharing tips before long, and then he too will move on.

But at least for today, I hung out with my friends. It made the time fly by.

Leroy Sievers

7:07 AM ET | 04-11-2008 | permalink | comments (47) | e-mail post

An Inconvenient World

The world is not made for me. Let me be more exact. The world is not made for people who are in discomfort or pain. It's certainly not made for the disabled. The more I deal with my petty problems, the greater my respect is for people who are disabled and deal with this stuff all their lives. I don't know how they do it.

The radiation has weakened me substantially. When I started, I barely needed the walker. Now I rely on it. My strength will come back, but I'll have a lot of work to do after that last treatment next Monday. I guess it's all part of coping, I have to think about things that I took for granted before. The mat inside the entrance to Hopkins. The walker can get caught in it, so I have to sort of hop the walker over it. It surprises me, but not every bathroom in the hospital is accessible. I have learned which ones have the railings and the space that I need.

The chairs in all of the waiting areas are nice enough, but they are low, and not easy to get out of. And for someone with back pain, they're not all that comfortable. The chairs in the examination rooms are worse. Most are very low, with no arms. That's a real problem for me, but then I have to remind myself that the chairs, the mats, the bathrooms, all that wasn't designed for someone in my situation. It wasn't picked out for someone in Cancer World. No, it's all for the normal world. And unfortunately, I don't function in Normal World as well as I used to.

I guess it would be asking too much, and would certainly be too expensive to make the world right for everyone with health problems. That's just not practical. But a lot more could be done. That's what I was thinking when I realized that the switch to open the automatic doors for the disabled was too low for me to reach. I couldn't bend down far enough. No, there's no way to please everyone. But when you're out and about, and see someone in a wheelchair or on crutches or whatever, remember that some people out there are working much much harder than the rest of us are.

Leroy Sievers

7:28 AM ET | 04-10-2008 | permalink | comments (46) | e-mail post

A Time Out, Please?

There are some times, on the tough days, when I just can't figure out what to do. Today was one of those days. One of those days I dread.

In addition to the radiation treatments, I had to have X-rays. Same machine, same table, but it means extra time in pain. The X-rays are taken once or twice a week to make sure the machine is lined up correctly. The staff knows that this is agony for me, and they try to hurry. But today was tough.

I was also trying a new pain medication that helped, but also had some troubling side effects. By the way, want to get a good scare? Read the brochures that come with the drugs. They make the treatment sound more dangerous than the disease.

So I got home from the hospital in a fair amount of discomfort. And I felt like a caged animal. I went from bed to chair, from sitting to lying on my back to lying on my side, all in about a minute. I tried to figure out which drug to take, which one might give me a little relief. But as strong as I try to be, sometimes I get a feeling of helplessness. I just didn't know what to do to feel better, to help the time pass, to make things tolerable.

It's a terrible feeling. I'm sure you've all felt it at some time. You're just tired of being sick, tired of not feeling good, tired of all of it. But you can't call time out. That's not one of the choices. So you just keep going and trying different things. Ice packs. Heating pads. Even a chocolate chip cookie is worth a shot.

And that feeling passes after a while. That doesn't mean that the pain or discomfort goes away, just that the feeling of total frustration finally eases.

I'll admit that these times don't bring out the best in me. When I'm in agony on that table, sometimes I moan in frustration and pain, and I'm not proud of that. But you know what, at this point I don't really care. I'm sort of past that kind of vanity. At those times, all I want is to find some relief. Wherever and however I can.

Leroy Sievers

7:05 AM ET | 04- 9-2008 | permalink | comments (100) | e-mail post

Adapting to New Realities

That should get better. As a cancer patient, you hear that a lot. Weakness from the radiation? That should get better when we're done with the treatments. Pain? Same answer. Neuropathy? That constant tingling in your legs and feet? That should get better over time. Unless, of course, it doesn't. When it comes to side effects, sometimes all you can do is wait and see and hope.

I've tried to come to grips with the fact that some of this is permanent. It's not going to get better. If it does, great. But I can't just sit around and wait. One of my nurses was asking me some questions about my history. She asked me to compare how I feel now with how I felt before I got sick. Wow. I don't think I could come up with an answer. I don't think I remember how I felt before the cancer invaded my body.

I guess I've gotten used to feeling bad. Now, I don't mean that to sound like I'm feeling sorry for myself. That's not it. You just get used to your new realities, good or bad. And it is always amazing what we can get used to. That's when you find out how strong you are. Not when you go through a crisis, but when you have to keep going through it day after day after day. When no matter how tough the previous day was, you have to get up and do it all over again. That's when courage comes in.

So maybe some day I'll wake up and feel better. Some side effect will be gone. But I'm not counting on it. I just hope each day that things won't get worse.

And I tell myself that no matter how each day goes -- I win, the cancer wins, or it's a draw -- I can get through it for another day.

Leroy Sievers

7:06 AM ET | 04- 8-2008 | permalink | comments (41) | e-mail post

Leave It to the Pros

Watch TV for any length of time and you can't help but conclude that Americans like drugs. Lots of drugs.

No, not that kind. Medical drugs.

Seems like two out of every three commercials are for some new breakthrough that you just have to ask your doctor about right away. Sometimes I wonder if the drug company came up with the drug first, and then found a disease it could cure. Sometimes the ads don't even tell you what the drugs do. They just want you to be sure to ask your doctor if it's right for you.

The side effects can be pretty scary, too. That's the part of the commercials when they speak really quickly. But every once in a while a phrase will punch through the background music. May cause some cancers. What? I heard that on one ad.

So I have to admit that twice I've been surprised to realize I recognized the names of the drugs being advertised on these commercials. I had been given those drugs during my recent hospital stays. One was a fairly common cholesterol drug. My cholesterol is exactly where it should be. I was given the drug as a precaution. The other one was a drug that's supposed to lessen pain caused by nerve damage. That's not what the ad was talking about. They had a fancy new name for a new condition. But they were talking about pain, so I figured, close enough.

It still made me a little uneasy. I know the drug companies put a lot of money into marketing. And these ads must be effective. I just don't think I'm going to run to ask my doctor about a drug that is sponsoring the all-night movie theater. I'll let the pros pick my medications.

Leroy Sievers

7:07 AM ET | 04- 7-2008 | permalink | comments (44) | e-mail post

Riding the Cancer Roller Coaster

Two steps forward. Three steps back. I had been doing pretty well on the physical therapy before I started the radiation. As painful as it was at times, I was getting stronger with every workout. But, just as my doctors had warned me would happen, the radiation made me weaker, and caused enough pain that it was hard to keep doing my exercises. My new strength started to slip away.

I went back to physical therapy yesterday for the first time since I started the radiation. My therapist said that as soon as she saw me walk in, she could tell that I was weaker. I already knew that, but hearing it from her was unwelcome confirmation. It wasn't all bad news though. We went through some basic stretching and some pain management, and I haven't lost everything. But after next week, when the radiation has run its course, I'm going to have a lot of work to do.

It was probably good that I had built up my strength ahead of time, so that I was in a better position to take the radiation and its side effects. But it's still discouraging. You work hard on something -- something as fundamental as walking unaided -- you hate to give back any of it. But it wasn't like I had a choice.

We have talked about the roller coaster that is cancer. I think this is a perfect example. A couple of weeks up, improving, then a couple of weeks down, that improvement lost. I've gotten used to the coaster, at least as much as I can. But it sure would be nice to get a nice level stretch for a while to let us all catch our breath, settle our stomachs, and get ready for that next drop. But this isn't that kind of ride I guess. No slow spots, no timeouts, it's full speed ahead every day.

So all I can do is hold my hands up in the air and yell as I ride down this radiation hill, knowing that on the other side, there will be a long climb upward to the top of the next hill. Or have I carried this metaphor too far? In any case, I've given up the hope that the Beast will slow down at all. So I just have to keep up with it. Actually, I guess I'd better try to stay one step ahead.

Leroy Sievers

7:08 AM ET | 04- 4-2008 | permalink | comments (65) | e-mail post

Don't Let Cancer Know You're Afraid

I wonder sometimes why I'm not scared. Or more scared at least. Scared of what the cancer is doing to me, scared of what we all know is the inevitable outcome. I keep thinking of the Woody Allen quote that goes something like "I'm not afraid of death, it's the dying part I'm scared of."

But as I try to peer ahead into a murky future, I see problems to be overcome. If, for instance, the cancer does survive the radiation and does attack my spine again, and I'm paralyzed, that will be a nightmare. My life will change in ways I can't possible imagine now. That will change the lives of all of those around me too.

But while I may dread such a future, I'm not afraid. Maybe it's because I don't think being afraid will help much. I can't change what happens, so I'm not going to spend the time I have now worrying about something that may or may not happen. If it does, I'll deal with it, or at least try to.

At some point, the cancer will most likely kill me. I'm not afraid of death. I think we are all a little afraid of what dying will be like though. Woody was right. Will it be painful? Uncomfortable? Awful?

Now I'm sort of walking on the edge of a topic that I really haven't written about very much, and that's religion. When I first started on this project, I made a conscious decision not to say much about religion because that is such a private issue, and one that people approach so differently. But I think that has a lot to do with whether or not people fear death. But I still think that's a private issue.

I guess I've always been something of a reactive person. I plan ahead, a little, but I have gone through life thinking that if something happens, I'll just deal with it, and move on. That's the way I feel about the cancer.

Besides, don't they always say in the movies that you should never show fear? I don't want the cancer to know that I'm worried about it. I want the cancer to be worried about what I'm going to do to it. For all that the disease has done to me, I hope that it lies awake at night worrying about what I'm going to do next. That only seems fair.

Leroy Sievers

7:15 AM ET | 04- 3-2008 | permalink | comments (59) | e-mail post

Lessons Learned

Every now and then I try to stop and take stock of what I have learned from wrestling with the Beast. Now that I use a walker, I have to be careful around rugs and mats, avoid them if I can. I try to find the highest chair in the room -- the higher the chair the easier it is to get in or out of it. I've learned where the uneven tiles are in our house, and how to drive the walker over them. I know how far I can bend before the pain tells me I've gone too far.

The radiologists and technicians and I have my treatments down to a ballet that runs pretty smoothly. I am pretty good at knowing where on the table I need to be so that my head ends up in the right place. I know the sound the machine makes when it's done so I can move my legs and find a little comfort.

Some of what I've learned is less specific to cancer, but belongs to everyone who is wrestling with chronic pain. I'm sure there are millions of us who don't sleep through the night. I know now that some form of Law and Order is running somewhere each and every hour. I also know that no matter how many times I've seen it, I will usually stop and watch. I know that Gladiator, Braveheart and Dirty Dancing will be on every night, and that Ghost is trying to get on that list too.

I know a couple of positions that will let me sleep, at least for a while. I know my house in the dark. How to get around, with the walker, without turning on the lights. I know that it's not very easy to carry a glass of milk or whatever while you're using the walker. I know that I will fall asleep shortly before I need to get up.

And most important of all right now, I know that I have nine radiation treatments left. But who's counting?

Leroy Sievers

7:21 AM ET | 04- 2-2008 | permalink | comments (35) | e-mail post

Losing Weight Without Trying

I am losing weight. And I'm not supposed to be. My doctors aren't so happy. When I was first diagnosed with a brain tumor, I was given steroids to reduce the swelling. Well steroids also make you really hungry, and it was Christmas time. Bad combination. The house was full of food, and I was ready to eat it all. Needless to say, I put on weight. And since I wasn't really in any shape to work out, I kept it on.

Until a couple of months ago. When I had my first spinal surgery, I started to lose weight in the hospital. That continued with the second, and then third, surgeries. I've lost a substantial amount now. There are some good reasons for that. The first was hospital food. I know that they try hard, but it still amazes me that a hospital that can work medical miracles can't make decent meals. Secondly, I had lost my appetite somewhat. With everything going on, I just didn't feel like eating. And they served dinner at 5:30. Who's ready to eat then? I spent a fair amount of time in Latin America, and lived in Miami. Dinner there starts around 10:00, and I got used to that.

But since I've been home, I thought I was eating a lot. When I started the radiation a week ago, my appetite went down a little, but I still thought I was eating a fair amount. But when I got weighed today, I was shocked. I'm not just skin and bones -- far from it. But I've also lost a lot of muscle and just bulk I guess.

Part of this is caused by the disease too. Cancer changes your metabolism. You can eat, but still lose weight. This is a real concern, one that I have to take seriously.

So I've been told to eat a couple of those nutrition shakes a day. It's funny, you may be hungry, but when you're told to eat, that you have to eat, all of a sudden you lose that hunger. I think back to my days as a wrestler in high school. In order to lose weight, I ate one meal a week. Literally. My parents found me sleepwalking out in the kitchen, pulling cans of food out of the cupboards. After that, I was terrified that I would eat in my sleep and not know why I didn't make weight. It was a terrible time.

Now I guess things have come around completely. Maybe I should leave some food out at night in the hopes that I will eat it in my sleep. Who knows, it might work.

Leroy Sievers

7:19 AM ET | 04- 1-2008 | permalink | comments (48) | e-mail post