compulsion to writeWell, after that last post (The unspoken temptation) I thought a less heavy one would be in order today.

Somewhere in this blog I wrote a post about having a purpose. If you find something you are passionate about and work towards it you will find your attention taking a 180 from Leuk. It helps to get your thoughts away from him and your brain back in gear.

My passion, or at least it’s more than a favorite hobby, is writing. I write two blogs, this one and another that has nothing at all to do with Leuk called NonlinearBrain. I don’t do posts every day for either of them but I do try to keep them as fresh as possible.

I am also working on a novel. Most of my adult life I was “writing a book” of some kind. I started several ideas for several novels but never got more than a few chapters in on each of them. I guess I thought I was too busy and couldn’t find the time. More often than not I just felt discouraged and quit.

Funny thing though, when Leuk came along I was suddenly motivated. It’s the one good thing he did for me. I’ve completed my first draft. It is very rough and full of holes as first drafts often are, but the concept is completed. That’s further than I’ve ever gotten before. Now I am diving into the challenging task of writing the second draft. This one is a lot more work for some reason, but I’m plowing ahead.

I’m not saying I ‘love’ writing. Sometimes writing can be very hard work – oddly exhausting for a project being done from a chair. I guess you could say I have a love/hate relationship with writing. Actually, I can’t say I love writing at all. It is more of a compulsion really. Something I am driven to do. If any of you are writers than I’m guessing you’ll know what I’m talking about.

Now, I’m no where near as prolific as Hemingway. I’m also a whole lot less talented. But that doesn’t matter. The important thing is I am doing something. I have a long-term goal and it is keeping me a lot more positive and less involved with Leuk.

So, let me suggest, what ever you’re interested in doing, do it.

Yawning cartoonI’ve been a bit sporadic in writing posts. The last few days I’ve gotten real tired, well more like exhausted. I’ve been fine in the morning and early afternoon but by 5pm I’ve had it.

Don’t worry. This isn’t going to be a whiny, downer post. It takes too much energy to complain. (That was a subtle sick guy joke by the way.)

It’s kinda strange, this tiredness. I went to bed at 6:45pm today because I was too wiped to stay up, yet here I am at midnight wide awake. I don’t know for sure if it is Leuk doing this to me or if my circadian rhythms are off. I prefer to think it’s the latter.

Anyway, it got me to thinking about this tired feeling leukemia can bring on and how we should react to it.

I know many of you are worse off than me in your battles with exhaustion. I’ve been pretty lucky so far. I’m a part-time, well very part-time, writer/photographer and today was a pretty productive day. I finished up processing some photos for a client and got some writing done on my book. But about 4 o’clock it hit. You’d think I had run a marathon.

So what do we do when our day gets cut short? We could get angry I suppose but what good would that do; anger really does sap our energy. We could yell at God, but sometimes we don’t have the energy it takes to raise our voice. Or, we could just give up.

Well, in my ever-to-be-humble opinion, I think we should accept it but not give into it. I know that sounds like an oxymoron; acceptance and giving in sound like the same thing, but they’re not.

You can’t really fight something unless you recognize it’s there. Suppose there’s been a rash of burglaries in your area. You could stick your head in the sand and ignore it or you could accept that it is real and do something about it – like start a neighborhood watch program for instance.

Some people on your block might give into a double whammy: accept the problem and give up. But you are different. You stick to the single ‘whammy’: accepting that it is real but not letting it stop you from trying to fix the problem.

So, I could sit and groan and accept defeat, or I could just accept that Leuk can be a pain in the ass sometimes and go on believing I can beat him despite any symptoms he might throw at me.

I guess I’m starting to ramble here. After all it is nearly 1am now and I feel coherent thought leaving me. I think I’ll go back to bed, lie there wide awake and accept that I will be tired tomorrow. But I’m for sure not going to let Leuk win in the long run.

Good night all.

It’s only two days since my hospital stay (see previous blog) and I’m heading off for a solo sail to the San Juans.

Stupid? Probably. In trouble with my wife? Definitely.

While driving me to the harbor, she’s getting more and more upset. I know it is actually fear because of the medical issue I had earlier this week. She’s afraid something will happen to me and thinks it’s crazy I’m going out so soon after my hospital stay.

The doctor gave me a clean report and it is unlikely that a bowel obstruction will happen again any time soon, but Willie has had to deal with so many of my health issues that the idea of me doing a solo sail scares her.

On the way to the docks, she finally lets out with several Icelandic expletives. Well, the words were in English, but the furry behind them was definitely Viking in origin.

Most of my life I have let the fears of others control my actions. This time I decided I wouldn’t let that happen. Though she got really upset, I went on the sail trip anyway. It is perhaps the first time I haven’t given in to someone’s demands. I’m very sorry I have upset her, but I needed this trip. She is busy this weekend with a church seminar so it is the perfect time to do this.

She said I was being selfish and she was right. It was insensitive of me to sail off by myself so soon after my bowel obstruction. I do regret worrying her.

But during the trip I came to a decision: I’d rather die living than live dying.

I’m not gong to let my leukemia or any other health issues stop me from living as full a life as possible.

This solo trip was the first step in reclaiming the real me. I am confirming my identity by the life I live, not by my health.

I will, however, from now on, try to accomplish that without hurting the one who loves and cares for me. Sorry honey.

I like to keep this blog as upbeat as I can because I sincerely believe you can have a life outside of leukemia even when it starts narrowing your options.

The dizzies are back. I can still control them with the pills but it requires a lot of pre-planning. Like yesterday, I wanted to see a friend who is stuck at home recovering from knee surgery. I took a pill about 9am even though I wasn’t dizzy because I wanted to increase my chances of having a day with him.

The sensation that comes before the dizzies is hard to explain, so I won’t here. I wasn’t dizzy but I knew it would come if I didn’t do something. So I took another pill at noon and waited a bit until the warning sensation subsided. All was well, but once I got to his house I felt a tinge and took a third pill. The rest of the day was fine.

I’m also a lot more tired a lot more often than before; sometimes sleeping in until 10am or later. My work has all but stopped. I will receive my first Social Security retirement check this week. I never thought I’d be retiring at 62, it is better financially to wait until later but things being as they are it seems time.

Today I stumbled and fell in the hallway. I swore like a trucker, got up, and the dizzies went away in about three steps time. Perhaps swearing is a cure. It’s for @&!#% sure worth a try!

Anyway, I feel good now. It just makes my planning a bit iffy. I told a church that I can play drums for their music group. It will only be once a month, but I hope I can control the dizzy and tiredness issues so I don’t let them down.

For a man who’s used to just getting up and doing things, this is all a bit frustrating. But I’m not going to let it get me down today. I have a doctor appointment next week so I should get more answers then.

Leuk is a pain in the butt (metaphorically speaking, my butt is just fine thank you) but I am so much better off than many who struggle with him. I read other leukemia blogs and realize how fortunate I am to have CLL. My version of Leuk is so much better than his meaner cousins are. Some blogs have triumphant news of the person beating his disease; others have a final entry written, not by the original author, but by a parent telling us that their son or daughter is gone.

Some of their stories put my whining to same. I guess I should stop complaining.

I dropped all my photography work. I quit doing real estate photography awhile back. But I had planned on keeping my interior design clients because they pay more.

One called just a few days ago. She had a job for me in Anacortes, Washington shooting a new house she’d worked on. I was going to do it but decided to call her back today and cancel. I’m finding Leuk is making me feel more tired.

I’ve done commercial work for a long time, mostly of products, harvesters, houses, and other things that don’t move much. If you’d like to see my site it is at www.jimwsmith.com.

I’m down to one client now – an architect who is also my son-in-law. His projects are usually closer to home. I hope I can keep working for him. We’ll see.

I’m really not too bummed out about this. After nearly 20 years it’s time for a change anyway.

Actually, Leuk is still being fairly good to me; though my oncologist is talking more about treatments. Probably won’t be for a while yet, but he is starting to bring the subject up more.

I hope you all won’t see this as one of those downer posts. It’s not. I’m just learning to let go of some things so I can enjoy others.

I have a loving wife, a roof over my head, no debt (except a small mortgage), creative projects, a great family, and wonderful grandchildren.

Just now, as I was writing this post my wife came in my office to say good night. I asked if she is alright with all this – the changes in me that are effecting our income. “I’m fine with it,” she said. “You’ve just got to stop worrying. We have enough coming in now and I feel secure no matter what happens.”

I hugged her telling her that, considering how this thing is effecting our income, not too many wives would be like this.

“I don’t care about other wives,” she said. “I’m fine with it.”  She has no idea how much that helped me.

In the past there were times when I took her for granted. Not now. I’m finally seeing, really seeing, who she is and how much she means to me. Sometimes love is not a strong enough word. The Bible speaks of a still small voice – the voice of God. More and more that voice speaks to me of her.

So, as you can see, despite the changes that are happening, everything is alright.

All is well.