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.

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

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.

Have you just recently leaned you have CLL leukemia? If so, then this podcast episode is for you. Everyone has a different reaction to the news, but we also have a lot in common. I’m hoping this episode will help you see that you are not alone and you can still be you despite the leukemia.

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.