March update

Hello All;

I've had a few weeks of not feeling super-great. Not really feeling terrible, but just not my best. I've had a slight chest cold (not sure if it's a second illness or just a continuation of my cold in February?) and some mild MS symptoms. I can't say it stops me from doing many things, except strenuous stuff like biking and running with the kids. But, I think back a year or so and realize how much worse I've felt in the past. When I do this, a little weakness and a few aches doesn't seem so bad. It's weird how you treat your various 'discomforts' when you have MS. I think if someone ever woke up feeling like I have the last couple of weeks, they'd be freaking out, call in to work sick, and be at the doctors office by 9:20 am. Now, this is not to make me sound tougher, or cooler, than others, but just point out that with the MS, you just take each morning as it comes. I kind of open one eye, open the other eye, then reach over to turn on the radio for the news and in that couple of minutes, my brain has done a full body assessment on the level of ache, itch, spasm, or tingling that I am starting the day with. Heck, it's a good day if your arm itches less and your legs aren't aching as much as the day before. It's funny what you can get used to.

Now, keep in mind that I had been feeling great until just a few weeks ago. All through Jan and early Feb, I was cruising. I really only had been having mild itching in my right arm (pretty minimal and very normal for me). I had been walking, biking, playing baseball, etc. Yesterday, I had my usual appointment with my neurologist, Dr. Bowen. Of course I wanted to know if it was bad that I was having an exacerbation like this since having the stem-cell transplant? He explained that I am most likely having a "pseudo-exacerbation" related to me being sick. When someone with MS gets sick or a fever, they can have some of their 'usual' symptoms, only a bit milder. I kind of figured this was the case, as each time I've been sick in the last year I get this same thing. But, my concern was that this was related to 'new' lesions or increasing activity with my current lesions. He assured me that I probably will continue this trend of feeling crappy when I get sick, and feel as I did in January when I'm not sick, but that does not mean my lesions are 'active' or that I have increased MS activity or anything. He reminded me that the goal of the HALT-MS Study is to 'halt' the MS. So, those lesions I have are there. They may heal some over time and I may feel less of these pseudo-exacerbations over time, but the goal is not to get any worse. I may even have some healing of my current lesions over the next few years. His explanation sounded pretty good to me.

Nobody can tell you how the stem-cell transplant will change, halt, hinder, curb, slow down, or stop the progression of your MS, but I often think of the path I would be on if I hadn't had this chance to do it. The likelihood is that I would have a slow progression of my disease, leading, over the years, to progressively greater disabilities, so you can't imagine how blessed and lucky I feel to have gotten this opportunity to be in the HALT-MS study. The upside is huge. Think about 15 years from now having NO problems with increasing MS symptoms and not having to be on medication. On the other hand, if in 3 to 5 years, this treatment doesn't prove to be 'the answer,' well, how much worse off am I than if I didn't try it? I'll bet not much. I am so happy with my decision and the outcome so far. I just have to remember that when I've gotten these little 'episodes' in the past, they last for about 2 weeks and just sort of fade away. And, I'm already feeling better than I did last week, so I should be back to my January routine in no time.

Blood count numbers continue to look good. Some of my counts were down a bit, but that's probably just because I have been a little sick. The virus' they check for (JC, EBV, and CMV) have been negative. I am off of my anti-fungal (Diflucan). I will continue the anti-viral and anti-bacterial for a full year. My hair is growing back. Kind of wimpy, but at least it's coming in. I'll probably get a trim next week just to keep it 'fresh' around the ears and back of the neck - plus, Casey asked me to. I am now on a schedule of weekly blood draws and I see the oncologist every other week. Next week I'll be at Day +100. I'm really looking forward to that milestone from purely a psychological standpoint.

As far as life at home goes, I've been a little disappointed with my performance in the kitchen. I thought I would become this great cook and all. But, I seem to just be cooking the same old thing. I did make some awesome chicken tikka marsala a few weeks ago, but my pasta fagioli and gourmet meatloaf were kind of subpar. Speaking of par, I've also been distracted by golfing. I've been trying to get my golf game going and I actually have a pretty sore shoulder from hitting too many range balls. I guess I have to choose between golf and cooking. Hmmmm, let me see, what would I rather do, spend 2 hours cutting up various ingredients to cook something I can't pronounce, or be outside, breathing fresh air, riding a golf cart around, and hitting a ball around a beautifully manicured golf course? FORE!

Kids and Casey are doing great. Jack is playing baseball and loves it! I think he likes it better than soccer. He is enjoying riding his bike, continues to do choir at school, and has moved up to 6th on the depth chart in chess club. Owen is as cute and stubborn as ever. He is thriving at Zoom (his Spanish immersion preschool) and loves writing letters and words. He's beginning to write in cursive and is also is reading us simple books. He knows all the states and capitals too. He's pretty amazing. Casey is teaching 1/2 day at Clyde Hill elementary. She enjoys the school and her schedule - at least until they put a toll on the 520 bridge. And, I have to say, I think they're happy to have me home. :) And, I'm happy to be home.

It's a great 'sports' time of the year too. Three of the four best things in sports are just around the corner. The Super Bowl has passed, but in the next month I can look forward to the Mariner's Opening Day, the NCAA Tournament, and The Master's. The Master's doesn't usually make this list, usually it's the big three (Super Bowl, NCAA Tournament and Mariner's Opening Day), but it vaulted up there this year because Tiger's back. What a zoo it's gonna be, I can't wait. He's so pathetic, I can't wait to see what he says next and what the fan response is to him. I guess you don't have to necessarily respect someone as a person to respect their golf game - we'll see.

Also, a quick weather observation. I can't believe how mild our winter has been. It's strange to watch snow, freezing cold, and flooding rains back east and it was 60some degrees her yesterday. Oh well, I guess we've had our bad years too.

Finally, I hope all is well with you and I personally want to thank everyone who donated $$$ to Casey or Jack for the MS Walk. Jack was so excited about raising money and checks his site everyday. Thank you grandma Helen for steering your generous friends Jack's way, he sure appreciates it. I know there are many many important causes out there, but if I'm not walking proof of the progress being made in the fight against MS, then I'm not sure what I can say. The walk is on Sunday, April 11th and we'd love to have anyone come out and walk with us - no need to officially sign up. We meet at Husky Stadium and walk the Burke-Gilman trail - it's only a couple of hours total. Call Casey or me if you'd like to meet up with us. We'd love to see you out there. Thank you again for wonderful support, be it $$$ in a donation or kind words/thoughts by email. It is truly appreciated greatly!!

Take care, Mike