My daughter has a wonderful heart and cares deeply about almost everything. I, of course, already knew this – I raised her after all – but living in such close quarters I was reminded of it.

One evening in particular we were watching a movie in which the main character got cancer. When I see such a movie of course it makes me think of my situation with leukemia. But I’m still at a stage where I feel pretty good most of the time and I don’t have to always focus on my health. So I forget that others are affected by my illness, in someways even more deeply than myself.

Anyway, after the movie was done I went into the kitchen to get something and she followed me in. Her eyes were wet with tears as she hugged me saying she didn’t want to lose me. We stood there hugging for a short while and I tried to reassure her that I had many years left and everything would be okay.

But this loving moment she gave me served to remind me how deeply this leukemia thing is affecting my family. When I’m having good days I wish there was a way to really make them understand that I’m doing well. I mean, I do have days when I get tired easily or have other annoying issues, but the leukemia is a part of me now and, fortunately for the time being, Leuk is taking it relatively easy on me.

So I forget the reality of it all. It might sound strange to those who don’t have leukemia, but there are times when I feel quite normal and forget I have it. But my words are never adequate to express how I’m thinking inside. And naturally no one has the ability to really feel what I’m feeling.

I guess what I’m getting at is this wonderful woman, my daughter, was expressing with tears and worry and sadness, her love for me. I will be forever grateful for that love, and the love I receive from all my family. But my hope is that my daughter, my son, my wife, and the rest of the family can somehow really understand where I’m at.

I love them all so much and I must remember that Leuk has invaded their lives too. My loving daughter’s tears made that very clear.

Last week I was trying to unhook a utility trailer from my car. As soon as the trailer left the car's hitch it rolled forward and, like the idiot I am, I tried to stop it.

The next thing I knew the tongue of the trailer fell, crushing the little finger of my left hand.

My wife rushed me to the emergency hospital and they sewed me up, but they said I had to see a hand surgeon as soon as possible because it was a crush injury with a severed tendon and broken bone.

Yesterday, the hand surgeon operated on my finger, trying as best he could to reconnect the tendon and repair the bone. He even had to remove some dead skin. Yuck.

Needless to say, it's going to take quite a long time to heal before I can do much with that hand. If you want to get really grossed out you can see photos of my injury on my blog at meandleuk.com.

Tomorrow our band is getting together to practice. So I’m gonna be a one-handed drummer. That’ll be a new thing.

Yeah, so I guess that's one way to take my mind off Leuk, but I hope you come up with a less painful solution!

Visit my blog at: meandleuk.com

I've had to learn to accept my CLL and not let the down days get to me. I hope this episode will remind you that when you need rest, do it. Don't feel guilty or that you're letting someone down.

Your loved ones understand.

Even though blood cancers are more survivable than ever before, we are acutely aware of Leuk’s death threats. This possibility of a shortened life can get our minds cranking in a direction we’d not considered before, or if we had, it was something we rejected as fool hardy, morally wrong, or even dangerous.

Ideas that once played out in fantasies start becoming possibilities. Let’s call it the “I’d-like-to-try-that-before-I-die” syndrome. I’m not talking about your usual bucket list stuff like hang gliding or deep sea fishing. I don’t have any statistics but I’m guessing the problem is more common among men.

Okay, so I seem to be dancing around it. If you have this issue than you know what I’m talking about: the desire for a brief dalliance or even a full-blown affair outside of your marriage.

Now, I have friends and relatives who read this blog so I want to be clear here. I am talking about temptations and close calls – not actual actions. But when I started this blog I promised to be as honest as I could with my readers. If my goal is to help and encourage those struggling with leukemia I can’t BS them. I have to be real.

In the early stages of leukemia, especially with CLL, Leuk is invisible. You still feel pretty good and to the outside world you look quite normal. But you don’t know how long you will still have the energy needed to remain active. You don’t know, especially in the beginning, what will come of you – what sort of life you will be living, or even how long you will be living.

During this time of inward (and frankly selfish) brooding, that little dark spot in your soul, the secret place that everyone on the planet has and tries to keep under control, starts weaving through your mind like the threading tendrils of a parasitic plant. What was once a faint, empty whisper barely heard, becomes a slowly growing chant pushing you towards compulsion. If not checked, you will act.

This is not a battle with Leuk. It is a battle within yourself. So how do you beat this thing? What tools are there to resist these dark thoughts?

Here’s seven to consider. Keep them in your tool bag at all times:

(1) God. If you have a faith in God than use it. Put Him to work. You’ve already been praying about your fight with Leuk and maybe, just maybe, the fight we’re talking about here is even more important.

(2) A Friend. Not just a beer drinking, Monday night football friend. I mean a real Friend – the one you trust, the one you can open your soul to and know he won’t judge you but will hold you accountable. If you are lucky enough to have such a friendship, reach out for help. You may have noticed I capitalized ‘Friend’ just like I capitalized ‘God’. Why? Well, I have such a friend and he deserves the same kind of respect. I don’t see him often but I know I can rely on him. My faith in God often falters but my trust in my friend never does.

(3) Your legacy. Think about what you will leave to your family. I don’t mean any inheritance of wealth. I mean the legacy of who you were and what you meant to them. The desire to build a legacy, a reputation if you will, before you die can overpower any compulsions that might destroy it.

(4) Your mind. Keep guard on what you put into your head.

(5) Read. Read. Read. Soak your soul with the bracing magic of good writers.

(6) Don’t spend too much time alone. Stay involved with your family. Just being with your spouse, your kids, and especially your grand-kids puts your mind right as to what is really important.

(7) Your roots. There is a beach grass that grows on the beaches here. Though it grows in the gravel and sand it is almost impossible to pull out. Each plant joins its roots with every other plant forming a strong underground web structure...]]>Those of us in the leukemia club sometimes face a temptation that’s seldom talked about. It doesn’t affect all of us but possibly more than care to admit it.

Even though blood cancers are more survivable than ever before, we are acutely aware of Leuk’s death threats. This possibility of a shortened life can get our minds cranking in a direction we’d not considered before, or if we had, it was something we rejected as fool hardy, morally wrong, or even dangerous.

Ideas that once played out in fantasies start becoming possibilities. Let’s call it the “I’d-like-to-try-that-before-I-die” syndrome. I’m not talking about your usual bucket list stuff like hang gliding or deep sea fishing. I don’t have any statistics but I’m guessing the problem is more common among men.

Okay, so I seem to be dancing around it. If you have this issue than you know what I’m talking about: the desire for a brief dalliance or even a full-blown affair outside of your marriage.

Now, I have friends and relatives who read this blog so I want to be clear here. I am talking about temptations and close calls – not actual actions. But when I started this blog I promised to be as honest as I could with my readers. If my goal is to help and encourage those struggling with leukemia I can’t BS them. I have to be real.

In the early stages of leukemia, especially with CLL, Leuk is invisible. You still feel pretty good and to the outside world you look quite normal. But you don’t know how long you will still have the energy needed to remain active. You don’t know, especially in the beginning, what will come of you – what sort of life you will be living, or even how long you will be living.

During this time of inward (and frankly selfish) brooding, that little dark spot in your soul, the secret place that everyone on the planet has and tries to keep under control, starts weaving through your mind like the threading tendrils of a parasitic plant. What was once a faint, empty whisper barely heard, becomes a slowly growing chant pushing you towards compulsion. If not checked, you will act.

This is not a battle with Leuk. It is a battle within yourself. So how do you beat this thing? What tools are there to resist these dark thoughts?

Here’s seven to consider. Keep them in your tool bag at all times:

(1) God. If you have a faith in God than use it. Put Him to work. You’ve already been praying about your fight with Leuk and maybe, just maybe, the fight we’re talking about here is even more important.

(2) A Friend. Not just a beer drinking, Monday night football friend. I mean a real Friend – the one you trust, the one you can open your soul to and know he won’t judge you but will hold you accountable. If you are lucky enough to have such a friendship, reach out for help. You may have noticed I capitalized ‘Friend’ just like I capitalized ‘God’. Why? Well, I have such a friend and he deserves the same kind of respect. I don’t see him often but I know I can rely on him. My faith in God often falters but my trust in my friend never does.

(3) Your legacy. Think about what you will leave to your family. I don’t mean any inheritance of wealth. I mean the legacy of who you were and what you meant to them. The desire to build a legacy, a reputation if you will, before you die can overpower any compulsions that might destroy it.

(4) Your mind. Keep guard on what you put into your head.

(5) Read. Read. Read. Soak your soul with the bracing magic of good writers.

(6) Don’t spend too much time alone. Stay involved with your family. Just being with your spouse, your kids, and especially your grand-kids puts your mind right as to what is really important.

(7) Your roots. There is a beach grass that grows on the beaches here. Though it grows in the gravel and sand it is almost impossible to pull out. Each plant joins its roots with every other plant forming a strong underground web structure that holds the beach together confounding the erosive efforts of the winter storm waves . By applying the above suggestions to your daily habits you will grow stronger and find that your dark desires become less important.

I wish you the best hope in your fight with Leuk and your struggles within.

Today I'm talking with my grandson, Josh. Please forgive the sound quality, we only had one mic.

Anyway, this podcast series is about how I have a well-lived life even though I have leukemia. And my grandchildren help me do just that.

Enjoy.

A Psalm of Life

Tell me not, in mournful numbers,


Life is but an empty dream!


For the soul is dead that slumbers,


And things are not what they seem.

Life is real! Life is earnest!


And the grave is not its goal;


Dust thou art, to dust returnest,


Was not spoken of the soul.

Not enjoyment, and not sorrow,


Is our destined end or way;


But to act, that each to-morrow


Find us farther than to-day.

Art is long, and Time is fleeting,


And our hearts, though stout and brave,


Still, like muffled drums, are beating


Funeral marches to the grave.

In the world’s broad field of battle,


In the bivouac of Life,


Be not like dumb, driven cattle!


Be a hero in the strife!

Trust no Future, howe’er pleasant!


Let the dead Past bury its dead!


Act,— act in the living Present!


Heart within, and God o’erhead!

Lives of great men all remind us


We can make our lives sublime,


And, departing, leave behind us


Footprints on the sands of time;

Footprints, that perhaps another,


Sailing o’er life’s solemn main,


A forlorn and shipwrecked brother,


Seeing, shall take heart again.

Let us, then, be up and doing,


With a heart for any fate;


Still achieving, still pursuing,


Learn to labor and to wait.

For those of you who just received the news that you have C.L.L., I don’t know if you’re like me, but maybe some of you have decided that you’re not wanting to tell people you have leukemia.

I was like that. Of course I had to tell my family. I did tell two people who are very dear to us because I didn’t want them to hear it from someone else, but even with them I was afraid the fact that I have leukemia might change our relationship.

Sometimes when people hear you have cancer, they don’t know how to respond to that, they feel uncomfortable around you and don’t know how to act. Because they worry that they might say something wrong or do something wrong

So there is a concern about things changing.

This episode will help you learn how to solve that and rebuild your friendships.

Hi, I'm your host, Jim Smith and I have CLL, which, if you found this podcast, you probably already know stands for Chronic Lymphocytic Leukemia. But I think CLL could stand for "Could's Lived Longer!"

Did you ever have some one show up on your door step you really didn't want to be friends with? Maybe he was too high maintenance or needy.

You'd been trying to avoid him, but there he shows up on your doorstep and invites himself in. And the worst part is he doesn't even have a sense for when it's time to leave.

Well, I had someone show up on my doorstep in September of 2009. Yeah, I named him Leuk.

I'd gone in for my regular appointment and the nurse told me that my white blood cell count was a little high, but it was hardly anything. It's probably because you're coming out of a cold.

Then she told me the doctor would like to do some further tests.

About two days later the doctor calls me and says, "Jim I'd like you to come in so we can talk about that blood test."

"Well, Doc." I asked. "Can't you just tell me over the phone?"

'No," he said. "I don't want you to worry. Just come in and we'll talk about it.

The next day I go in. He and I are good friends; he's been my doctor for nearly 35 years.

So he comes in, he puts his hands on my knees, looks me right in the eye and says, "Jim, I'm sorry, but you have leukemia."

I wasn't quite sure how to react to that. It was weird. I wasn't afraid or even angry. I was just numb. It almost felt like I was watching a play, like there were two people over there and the doctor is tell the guy he has leukemia.

That probably doesn't make sense to you, but, yeah. It was an odd feeling.

In fact, I made a stupid joke. I said, "well, that's a rare disease, maybe I should buy a lottery ticket since I'm so good at getting rare things.

It wasn't a very good joke. The doctor said, "Well, you're taking it well."

The truth is I wasn't taking it well at all.

For the next two years I didn't have any real symptoms and Leuk was kind of like one of those invisible friends children have. You know, like not really there?

But during those two years I guess Leuk got tired of being ignored, because on my next blood test the doctor said, "well, your white blood cell count has been steadily increasing. It's twice what it was in 2009.

So... That was interesting...

Well, if you're with me so far, you've probably noticed this is not your your normal leukemia podcast.

This one is more about how to live life despite your CLL.

I know the word leukemia is scary. It is, after all, a life threatening disease. But here's the thing. I believe life isn't about how long you've got. It's how you live it that matters.

That's really what this is all about. I won't always be talking about leukemia. Sometimes I'll just be talking about how my day went and what I did to avoid thinking of leukemia.

Because Leuk is a mean taskmaster. If you let him, he'll take over your thoughts and pretty soon that's all you can think about.

So this podcast is about how I live my life with CLL. And along the way, hopefully there will be something in there that will help you.

Also, for the last 9 years or so, I've been writing a blog called Me and Leuk. And it is also along this same theme of keeping Leuk from taking over your thoughts.

So if you'd like to check that out, it's at: meandleuk.com

Maybe there will be something there that will help you out.

Okay, so what did I do today to keep my mind off leukemia?...