Hi all,

Been awhile. Had my ups and downs, been busy, had to join some cowboys and round up a herd of zebra, …ahhhh, well, if I can make up any other excuses I’ll be sure to let you know.

Anyway, the doctors for the umpteenth time think they know the cause of my dizzy spells. Apparently I was overdosed on a med so they’ve lowered it. Well, we’ll see. I’ve had my hopes up before. So I’m skeptical but hopeful.

Btw, my spell checker just corrected my spelling of “umpteenth”… I didn’t even know that was a real word. But apparently it’s in the checker’s dictionary.

Oh, are any of you Twitterers? I’m on Twitter now. You can find me at: https://twitter.com/LeukFighter.

I know this is a short post, but one of the zebras jumped the pen. Gotta go.

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GuysPlaque2aWe recently attended a ceremony where our son, firefighter Guy Smith, officially received his title of Captain. He was promoted to full captain a year ago and has now completed his probationary period. He manages a great crew of firefighters and is lauded by the upper management. Mom and I are so proud of the man our little boy turned out to be. Last year was a crazy year for Guy. He was promoted to the new position at work, ran his electrical business, remodeled their house, and their baby Kristjan was born.  Sarah, Guy’s wife, is an amazing woman. Guy had to put in long hours and she supported him all the way. Way to go you two.

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columbia tower

Columbia Tower – tallest building in Seattle

I just learned my son is doing a fund raiser for the Leukemia & Lymphoma Society in my name. It is best said in his own words which he posted on Facebook:

I am participating in the Scott Firefighter Stairclimb next weekend to help raise money and awareness for blood cancers. I will be climbing 69 floors in the Columbia Tower in Seattle in full bunker gear and SCBA. This year I will be climbing for my dad who was diagnosed with CLL (Chronic Lymphocytic Leukemia) a couple years ago.

All proceeds from the stair climb benefit The Leukemia & Lymphoma Society (LLS). Please support me by going to the link below and click donate. Type my name in and then donate. It’s that easy! Thank you for supporting me in the fight against blood cancers!

His goal is $1000 and he is already at 35%. Please donate what you can and help him reach his goal. My son honors me, I love him so much. The climb is this coming weekend so he will need the donations before then. Thank you all.

To donate, go to this link: Scott Firefighter Stairclimb, click on the “donate” button and type his name in the search box, then scroll down, click on his name and donate any amount you wish. Thank you all.

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I just received some good news regarding recent tests.

Back on my post of February 7th, 2014, I talked about upcoming blood tests. The results are in now and the news is good.

If you want the short “Readers Digest” version, things have stabilized so I won’t need chemo for possibly another 4 years or longer. The doctor couldn’t guarantee this, things could change, but the chance looks good.

Now, for anyone interested in the long “Mitchener Novel” approach, I’ll go through each test one by one.

The first blessing was the doctor decided to do this blood test instead of a bone marrow biopsy – that saved me a lot of pain… Yay!

Metabolic panel: this was checked on Jan 14th 2014 (see my Score Card page). There was a slight dip downward in my white blood cell count and also a drop in my lymphocyte count, while my red blood cells and platelets remained within the normal range.

A quick note on lymphocytes: Lymphocytes in healthy people are there to help fight infection but in CLL patients abnormally high numbers of ineffective lymphocytes are found in the blood and/or bone marrow. A high lymphocyte count is a good indicator that Leuk is around. It is even a better indicator than just a white blood cell count. This is because lymphocytes are a type of white blood cell and so a high lymphocyte number gives a percentage relationship between them and the total number of white cells.

My doctor used a great metaphor to explain this: All burglars are human, but not all humans are burglars. So… cancerous lymphocytes (bad guys) are white cells, but not all white cells are bad guys.

Beta2 micro globulin (B2M): this was a test to check for any tumor markers. The result was negative (that’s a good thing).

Immunoglobulin (IgG): this checks for autoimmune disease. Also negative.

There was another test I didn’t mention in my February 7th post: Fluorescence in situ hybridization (FISH) test. Yes, FISH test… but they were not looking for trout.  As best I understand it, this is a chromosome/DNA test. Anyway, to save you a lot of incomprehensible jargon, my prognosis was favorable.

Bottom line: I will probably be avoiding chemo treatments for several years.

But the best news is, new research and treatments are rapidly developing. If I can stay stable for 4 years or so there may well be treatments better than chemo. Researchers my have found better ways to identify what treatments are best for specific patients. In other words, whereas chemotherapy is a “shotgun” approach to killing cancer cells, new treatments could identify exactly how to target the cell makeup of each patient’s individual blood structure.

At least that’s how this layman understands it all.

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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.

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