LIVING WITH MCL

No more 80 hits in a day to gloat over. It's back to my lowly 30 or so hits per day, so I thought I'd just take the time to update a few items I posted on over the last few days. Edie had to stop the Pomalyst [for now]. Her white counts took a precipitous drop to dangerously low levels. I guess the Pomalyst is working too good. She's had 3 neupogen shots since then, and her white counts have rebounded to a respectable 2.3. That's still well below normal, but it's considerably better than where they were earlier in the week. Waiting for her next blood draw tomorrow [Monday] to decide how to proceed. I said before, this drug is very new, so there's going to be a learning curve. Just not sure Edie [or I] appreciates her being the one used as the guinea pig. Oh well, someone has to be! As for me, my MCL remains stable [no change in blood counts], but I'm still experiencing more and more fatigue , which I can't explain but am convinced is caused by the Lipito...

On Saturday, I received 80 hits to my blog. That is far and away the most visitors ever to my blog in a single day. Even more remarkable, it was the weekend which is typically a slow time. So why the sudden surge? It certainly isn't because visitors are interested in me. Most of the hits, almost 50% have been for a post about  curing your cancer not being the best idea . And that wasn't even my post. It was a repost of an article I found in the Wall Street Journal [in 2006] which I thought of interest. It used to be a couple of posts I did on polychromasia were the biggest draw, but no more. Those posts still get their share of hits, just not as many as the curing you cancer post, and I'm curious why the shift? I've also noted a shift in who's visiting my blog. By far the most hits come from the US (as you might expect), followed by Canada and Great Britain. But lately I have been seeing more hits from other countries like Australia, Brazil, Ireland, Taiwan, Norway,...

Edie has started on her second round of Pomalyst, and the results just keep getting better. Her Kappa freelight chains are now down to 36 from the 175 about 3 weeks ago. The normal [reference] range is 5 to 19, so there is still a little ways to go, but at least there is progress. Her numbers haven't been this low since after her transplant in October 2008. (It's hard to believe it's been almost 5 years now.) The only question remaining, as it was was when she first started on the drug, is how long to take it? There doesn't appear to be a good answer for that. Since this drug is so new, there's not a lot of information about how long to stay on it, or even how long is safe to stay on it. Fortunately there doesn't appear to be any significant side effect which can be attributed to the Pomalyst, and which could prevent its further use. So for now the plan is to finish this cycle, and then see what her numbers are at the end and how she's doing, and then decide...

A couple of years ago Tiger made some changes to his golf swing, under the guidance of a new coach (Sean Foley), and while he is still considered a good golfer, he isn't the great golfer he was before making those changes. Some might attribute most of his problems to the break up with his wife, because that's when everything started to go a different direction, but I know better. There was a time when I was a better than average bowler. I was able to average between 195 and 200 pretty consistently in all the leagues I was in, but like Tiger I wasn't satisfied.  I thought I could be better. So I took a lesson. The lesson was well worth while [or so I thought]. My "coach" helped me correct a number of problems I was having, and as the lesson progressed, I was feeling really good about my game. Of course that was practice, and one thing I've learned from 30+ years in manufacturing, is nothing ever works in the lab, under controlled conditions, like it does when i...

The electric company shut off the air conditioner (the 2nd time in 4 days). It's 95ºF outside, and they went and shut it off at the hottest time of the day. Admittedly I have given them permission to do so (for a discount on my electric rate during high usage periods), but that still doesn't make it any more tolerable to sit here in the sweltering heat. It's so hot, I don't even dare have another cup of green tea, as I was planning, for fear I may melt. The only saving grace is I don't live in New Orleans, as someone recently told me this would be a good day there. WOW! If that is truly the case, I don't know how the people of New Orleans can possibly survive a bad day. Edie and I lived in Houston, TX for about 4 years, and I don't remember anything like this back then. Of course we were a lot younger then, and I didn't have a deal with the electric company either. Oh well, I guess I'm just going to have to suffer until the sun goes down!

I knew there was a good reason I've been feeling so run down (fatigued) lately. The truth is I've been run down ever since my diagnosis with MCL, which can mostly be attributed to a <12 g/dL hemoglobin, but lately I just seem more so. A large part of the perceived increase in fatigue could be due to the weather, which has been unbearably hot as of late (my electric bill is going to be so high this month), plus I am getting older everyday, but in light of this  report linking statin use and fatigue , I can't help but think there is a lot more to it. As if relenting to having to take a statin for the rest of my life wasn't bad enough, now I have to deal with this information. Maybe I could just do with a boost from some performance enhancing drugs. (See "In defense of Lance Armstrong" to the right!)