April 2010 - Sorry I'm Late!

Boy o Boy, it's been awhile. Well, I don't want people to think I've fallen into some abyss of pain and discomfort or that I am doing poorly medically, so I wanted to get a blog entry done. I know I'm slacking when I get an email from a friend in So. California asking, "What the hell's going on with you, are you ok? I'm assuming you're still alive because I haven't heard from Casey about anything. Do some blogging, will ya." What I really want to do is write this neuvo-techy person back and say that when I can blog from my iPad using my bluetooth wireless and dictating via my dragon handsfree voice recognition software, then I'll be right there for you. Unfortunately, I don't think any of those devices are in my foreseeable future, so I'm going to just have to log into my iGoogle account, click BLOG and choose NEW POST - I can do that, so here goes. But, at least now I know what equipment and software I will need to be a daily, ultra-successful blogger, so at least there's hope for people like me with CDDD (Communication Device Dysfunction Disorder).

Anyway, the email got me sitting here in this chair and prepared to inform the world of my condition and whereabouts. I tell Casey, "I'm not sure people really want to read all this stuff." And, as Casey reminds me, "Everyone else may not care, but someday you'll care, so get your butt writing." If I'm lucky, she has resigned herself to the fact that 'Mike will never write again,' that way she won't read this post and see what I really think of her --- 'She's always right!' Luckily, I didn't say that too loud and I've even destroyed the scratch paper I jotted it down on - whew, no evidence laying around that might prove I respect and love my wonderful wife more than anyone else in the whole world. Oh, in addition, she just so happens to be right most of the time.

For a quick recap, I've had THREE cold/respiratory infections, one in Feb, Mar and April. The April one was the worst, as I had a ton of the 'gunk' in the chest and a pretty bad cough. But, they didn't do antibiotics and I did finally get over it. Each time I get one of these, and it doesn't drop me, I have to say I get a pretty big emotional lift. I feel like, "I CAN SURVIVE ANYTHING!" Well, maybe not quite that big, but at least I feel good that the immunity I have can keep the common stuff in check pretty well.

The big problem with getting these illnesses is that when I get sick (this also happened every time over the last 2 years, so this isn't new), I feel like crap. When my immune system gears up to fight an infection or illness, my MS lesions take a hit and I get very fatigued, have some sensory problems like pin-prick/itching feelings in arm and some leg weakness with spasticity. I don't think I felt this as much in the past because I was in better shape. Currently, I have had a ton of muscle atrophy over 3-4 months, so I just don't have the reserves I've had in the past. This 'crappy' feeling is quite annoying and usually lasts about 2-3 weeks for every illness, then slowly tapers down to my baseline - which means, I feel pretty good most of the time. Like right now, I was sick in early April and have felt great for about the last couple of weeks. My neurologist says that these are NOT new lesions forming, but he "thinks" they're what they call "pseudo-exacerbations." The immune system response annoys vulnerable tissue in the lesions you already have and voila...you feel your 'crappy MS days' for a little bit until everything settles down. I can live with this, as it's the new lesions I'm trying to avoid. I already have 6 (or 9 depending on who you ask) brain lesions and 2 spinal lesions, so those aren't going anywhere. It would be nice if they got better during the first few years post-transplant, but hey, I'm not complaining, if I can maintain this level of disease, and not progress, count me in!

Got a call last week that my blood counts (White Blood Cell counts = WBC) have been down the last two draws. I was having my blood drawn yesterday and they always want it to be over 3,000 (the WBC that is). I've been down in the 2,000s. Not good enough. Of course, when I say, "Well, if it's still down there, what would we do about it?" I get, "Nothing, we'd just keep watching and hope they come up, there's not much we can do." So, I think, 'then why are you calling me? To tell me that your bone marrow graft stinks and you're not progressing well, but we can't really do anything about it.' I vote for this scenario...don't worry Mike with a phone call about things that there isn't a defined treatment for. If you do, then I'll be out golfing and my usual swing-thought to 'keep your head down Mike, and bring your hands through first' will be over-shadowed by 'geez Mike, your counts sure aren't very good and there's very little you can do about it.' The next sound you heard there was my ball crackling through tree branches as I duck-hooked it into the woods. Please, don't give me any thoughts that might make my golf game any worse than it already is.

But, yesterday my WBC count was 3,400 and they were all sooooo happy. So, that means I'm happy too. I'm shooting for 4,000 next draw - not that there's much I can do about it. I see myself as a prisoner to time...just waiting until the graft matures and your counts improve. In addition, I'm always in pursuit of perfecting my sickness avoidance maneuvers. You know, avoiding unnecessary exposures and staying clear of sick kids, including my own - which isn't easy. All other lab work looked great. I get labs drawn every 2 weeks and see the doctor monthly. I haven't had any growth in the virus department either. My CMV, EBV and JC virus' have been 'non-detectable.'

Things I'm doing consist of kids, house chores, working on my golf game and keeping Casey smiling (you know, daily back massages and all). Pretty much get up in the morning with kids, get them breakfast and then off to school. We try and walk if it's nice and drive in the rain. They don't like walking, but I just play the "Dad just had a bone marrow transplant, so get off your a@@ and walk with me" card. It's pretty effective in getting us out the door on 'walk' days. Then my day usually involves some house cleaning, to do list, picking-up things, stuff for the kids, laundry or hitting some golf balls at the driving range. All of the sudden, it's time to pick up kids again. Owen first, then Jack later in the day. Followed by something to eat and baseball practice or games on Tue, Wed, Fri and Sat. Oh, and soccer on Sun for Jack. Every once in awhile I'll throw in a haircut, some homework, a request to "clean you room please" and even a video now and then. All of the sudden it's shower/bath time and some reading before bed. That pretty much sums up my daily duties, except somewhere in there Casey goes to work and comes home again :) All in all, not a bad deal, I feel pretty darn lucky!!

What's been nice is that Casey and I have had a few nights out. I've also gotten to enjoy a few Guinness', which I've decided are one of the delicious little treats in life. We've made it to Intiman Theatre to watch Paradise Lost. Talk about a must-see for putting things in perspective. I told Casey as we were leaving the performance, "Well, that actually was a pick-me-up because you really don't know how good you have it until you've seen (or read) Paradise Lost." If I could, I would thank Clifford Odets personally for writing it and making my life, and the lives of most of the people I know, seem like a Utopian Garden of Eden. Thanks Cliff.

Lastly, trying to do some planning for some summer driving trips. Still need to avoid airplanes unless absolutely necessary. Going to Whistler for 8 days, but trying to think of another adventure too. We have one more 8 day stretch at the end of July and are mulling between Yellowstone (Jack), Silverwood Amusement Park (Dad), SF Bay area (Casey), Alcatraz (Jack) and any old-west ghost or mining towns (Jack). You probably noticed that Owen doesn't care. Just because he knows all the states and capitals doesn't mean he wants to visit them. Of course, they BOTH want to go to SeaWorld and LegoLand. I wonder if that's because their dad won't stop talking about how much he wants to go there too. But, that trip is going to have to wait for next spring break. In the words of a caveman named Org, Los Angeles is "too far to drive, kids would make me crazy in car that long, must take flying machine." So, once again, we'll wait. Whether it's a trip in a flying machine, good blood counts or a new job for Mike, we'll wait, and be happy doing it.

Love to all and Happy Spring. Mike