Me and Leuk

My daughter, her husband, and their two children moved in with us while their new house was being built. This physical closeness (there were six of us in a very small house!) gave us all a chance to develop a spiritual closeness as well. 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.

How to have a spiritual life when you have leukemia.

I just came up with the perfect distraction to take my mind off leukemia. Although I wouldn’t recommend it to anyone else. 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!

Throughout this podcast I've tried to encourage people with CLL leukemia that they can have a well-lived life in spite of their disease. Well, now it's time for me to take my own advise as I face a new challenge: bladder cancer.

Like so many things in life, leukemia brings change. When CLL came into my life, I still felt the same physically. But in my head I felt suddenly different. I knew the future was no longer going to go as I'd planned. The question was, and still is, how will I deal with that change? Do I fight it or embrace it? Do I let fear and doubt rule me, or do I push through it -- acknowledge my new life and move forward. Hopefully this podcast will have some answers.

Don't let leukemia stop you from enjoying life. One of the best ways to do that is by setting and accomplishing goals. The aim of this episode to to encourage you to live a full life, no matter how long you have.

Yes, you have leukemia, but if you allow yourself to take your time you can accomplish more than you think. It's okay to take longer to do a project than it did before you had CLL. On today's episode I talk about my adventure tiling our bathroom. It took me three weeks! A job that most would do in a few days. Now, some of that time was spent learning how to do a job I'd never done before. But I also had to work at a slower pace. But I did it. So don't give up on yourself. And don't let Leuk convince you that you can't accomplish things.

CLL leukemia, it ain't fun. Though my leukemia can seem like an invisible disease, sometimes leuk raises his ugly head and I just have to take a day off. That happened a couple days ago. So, of course it was a bit frustrating, but I didn't let it get to me. I didn't let leuk control my thoughts. It's okay to take some time off if you need to. Tomorrow will be better. Don't be hard on yourself if you can't accomplish ever thing you want to in one day. It's okay. You're okay. And, you are not alone. The rest of us deal with it too. I hope this episode will encourage you to keep on being who you are and not let leuk weigh heavy on your mind. Visit my blog at: meandleuk.com

There are ways to beat the fear and worry of having leukemia. Today we talk about setting short-term and long-term goals and how that can have a positive influence on your life. Don't let Leuk beat you down. Engage in Life again.

Those of us with CLL leukemia can tend to narrow our lives down, letting leuk change us. But there is a whole life out there that we shouldn't let go of. Recently I spent a day playing disk golf with a friend. I was reminded that there is more to me than the leukemia. I can't let my disease stop me from being who I am. Leuk may be changing me physically, but I don't have to let him change me spiritually. I am still me.

It's easy for those of us with leukemia to become kind of selfish at times and get too wrapped up in our own lives. We need to remember that those who love us - our caregivers, family, and friends need encouraging words, just like we do. A simple text from a friend reminded me of the power of uplifting words.

Welcome to my life with Chronic Lymphocytic Leukemia a.k.a CLL. Today I've got the tireds, but I'm pushing through it.

Feeling a bit down today. It's not the CLL leukemia so much, I guess it's the Fall season and the weather... who knows. If you're down too maybe today's episode will help. I know it's helping me just producing it. Also in this episode I mention a special listener to my podcast. So this is for her and all the others listening today.

This whole leukemia thing can get in the way sometimes. This last week Leuk did his thing and I had to lay down. I'd had a great day with my grandson, but the next day I felt tired. Not just tired, but a kind of weak tired. So, although our grandson was staying for two days, I wasn't available for him as much as I wanted on the second day. 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.

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...

It's not often talked about. In fact, most folks avoid the subject. But those of us with leukemia are perhaps more aware of it than most. Today's episode is about dying. Now don't leave, it's not going to be a downer. In fact, I think you'll find it uplifting. It's a story, a metaphor, really, about life and death. And it starts in the arms of a caring mother.

If you have CLL leukemia, you know it can be hard to take your mind off it. The thing that really helps me forget about Leuk for awhile is m family. 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.

This episode talks about leuk's brother and sister - Fear and Worry. If you have CLL, there is a way fight back at these foes of leukemia.

Those of us with CLL leukemia could always use a bit of encouragement. So, here to do just that, is the great Henry Wadsworth Longfellow: 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.

If you’re new here, my name is Jim Smith and I have Chronic Lymphocytic Leukemia, a.k.a. CLL. Today I thought we’d talk about coming out. Oh, I don’t me THAT kind of coming out! I mean when you come out and let your friends know you have leukemia. 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.