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!)

In times of change, learners will inherit the earth, while the learned will find themselves beautifully equipped to live in a world that no longer exists. While the US is still so focused on fighting its battles with bombs, and military personnel on the ground, the rest of the world is using far more sophisticated, and potentially lethal weapons against its enemies, and the US. Just think the devastation that could be caused by a few well placed cyber attacks on our financial institutions, or our energy grid. And what do you think would be the result of China or Russia blowing up a satellite put into counter cyclical orbit at 22,000 miles in space. The results would be far more devastating than any military action the US could conceive, assuming the US could even launch a military attack in the resulting chaos. The terrorists no longer need to physically attack us. All they have to do is threaten. The US will end up destroying itself trying to prevent those perceived [yet non existent)...

It's now been just over 2 weeks since Edie started her first 28 day cycle (21 days on and 7 days off) of Pomalyst, and the initial results are encouraging. After only 12 days on Pomalyst, Edie's Kappa Free Light Chains dropped from in excess of 600 to 175. I believe that to be the biggest individual drop in numbers she's ever experienced. Don't know if any new side effects can be associated with the Pomalyst. Edie has been (and still is) on so many different drugs, it's difficult to determine what side effects are caused by what drugs. At least she doesn't appear to be any worse off, so that's a good sign. The only questions remaining now, are how many cycles of Pomalyst will she need, and if the treatment will be long lasting? Only time will tell!

I was reading an article in the most recent AARP magazine about Bill Clinton and his decision to become a vegan. Clinton traces that decision back to [angina] pain he was experiencing one morning in 2010 (6 years after quadruple bypass surgery), which resulted in him requiring a stent because one of [the grafted] veins "had given out". I did some additional research (on the internet) and discovered the vein hadn't actually given out, as reported in the AARP article, but rather it had become clogged. Further research revealed Cardiac experts say that the blockage of grafted heart vessels is not unusual in bypass patients. Depending on whether the grafts are veins or arteries — the former being smaller and less flexible than the latter — blockage could occur as soon as five years or as late as 10 years following the initial surgery. Schwartz said the bypass graft that was blocked in Clinton's case has about a 10% to 20% failure rate at five to six years. Maybe I'll...

When it comes to life, it should be a simple decision. Right? Well, I used to think that, but now maybe not so much. It depends on how you define quality of life, and what the alternative is? I like to think, when the time comes, it will be a simple decision for me, but since that time hasn't come yet, how can I really be sure? Now consider the same question when it comes to food. Is that as simple a decision? For me it is. When it comes to food, I always choose quality over quantity. Still the question arises, how do you define quality? Some people may equate quantity with quality. Some people may prefer lightly seasoned food. Others more seasoned. Like wine, we all have different tastes and what I like, someone else may not. I bring this up as a result of the dinner Edie and I attended this past weekend with the wine group we belong to. I thought the food was awful [tasteless]. The portion sizes were large, and the price was right (including no corkage), but the food, IMO, was ta...

And what a chore it was getting it! Received a call from the Kaiser pharmacy yesterday regarding the Pomalyst Edie is about to start taking for her Multiple Myeloma. Edie wasn't available at the time, so I attempted to deal with the pharmacists questions. While I only spent just over 20 minutes on the phone, it felt like an eternity, listening to the pharmacist go over all the concerns with the drug, including the cost, which was A LOT more expensive than I thought. And this was on top of the 2+ hours Edie spent with a nurse a week or so ago, signing all sorts of documents, and going over, I'm sure much of what I went over again yesterday. I understand all the concerns Celgene has with using this drug. Pomalyst, AKA Pomalidomide, is the second iteration of Thalidomide  (the first being Revlimid), the sleeping pill/tranquilizer that created such an uproar in the early 60's, due to its link to birth defects in babies born to mothers taking the drug, but this just seemed over...

Despite my best intentions, I've not been able to sever myself from the myriad of message boards/discussion groups (some highlighted on the right sidebar) I belong to. I knew severing myself from the internet would be a daunting task, but I didn't think it would be that difficult when it came to the message boards. When I was first diagnosed, they were helpful. It's how I learned I likely didn't have CLL (my original diagnosis), and that my original doctor wasn't as dedicated as I would have hoped. But now I get little or no information of value. I've tried imparting some of the knowledge I've gained over the past 11+ years to some on the message boards, but I've never been the most tactful person, and some people actually take offense to some of my insights. So I rarely if ever participate anymore. So why I keep cluttering up my computer with information of so little value is beyond me? They do provide the rare blog post idea, and I have found the Multi...

Yesterday I was going to post about redacted , but after dwelling on it a bit, I thought, do I really want the entire world (and the US government) knowing that about me? So I reconsidered. It wasn't anything of significant consequense. It's just with all the news as of late, I have come to believe some things are best left unsaid. A few close friends are aware, and I'd like to keep it that way. Anyway, call it what you like, fear, paranoia, even naivety, there's no denying the government, as well as many large corporations are tracking our every move. The only question is exactly what are they using that information for, who are they giving it to , and will they use it against us, or for nefarious purposes? I can't answer that with any certainty, but I do know, I'm not willing to take that chance. Still that doesn't mean I'm gonna stop posting again, because I'm not. There are still plenty of important things to write about. It's just the job at...

I just checked the number of hits on my blog in the past 24 hours, and there was only "1" hit. I've never had an abundance of hits in a day, but only 1 in 24 hours seemed a little too much. [note]I've since discovered the reason for so few hits was having forgotten to add in the "Sitemeter" script back into my footer, after updating my theme yesterday. So any hits they may have happened weren't recorded.[/note] Oh well, such is life! But regardless, and for whatever reason, I've decided I need to start posting again. It's always been sort of an outlet for me. Fortunately there isn't much new to report in my regard, as I am still doing fine [mostly]. I have my problems, but............. I only wish I could report the same for Edie. She hasn't been all that well lately. She's off all her medications now, sans Dex and Biaxin, in preparation for starting the latest and greatest in Myeloma treatments, Pomalidomide. The second, third or fou...

For my diagnosis of MCL that is. For years, prior to my diagnosis with MCL, I had taken mega doses of vitamin C (2000 mg/day), along with vitamins E and D, and calcium, solely based on the supposed research of Linus Pauling suggesting it would prevent cancer. It wasn't until shortly after my diagnosis with MCL that I started reading about the hazards of taking vitamins and supplements, and while I didn’t stop immediately, it wasn't very long afterwards that I came to the realization, it was highly likely all those vitamins and supplements were, at the very least, a contributing factor to my diagnosis. Now, I can proudly say I have been vitamin and supplement free for the past 10+ years, and haven't experienced any undesired consequences. (At least none that I am aware of.) It's just too bad  this article in The Atlantic didn't come out long before my diagnosis. I'm sure I would have stopped taking them a lot sooner, had I learned about all the contradictory ev...

So anywaze, besides that, my attempt to sever myself from the internet has been met with mixed results. I did delete all my social media accounts, i.e. Facebook, Twitter, Linked in, Strava, and even a few I only recently rediscovered I had. What I am having trouble with though is eliminating all my email subscription accounts. I still get some useful information from them occasionally. Plus I can't help but marvel at the naivety of so many individuals. I don't know why I'm so enamored by it, but I am. Surprisingly I have managed to refrain from commenting on [most of] those posts, which is an achievement in itself. Hopefully time will take care of the rest.

First it was my Facebook page, then it was my smart phone, and now it's the Internet I read in the latest AARP magazine, if you want a job you need a presence on the Internet. You need a Facebook account, Twitter account, Linked in account. etc. If you don't have a presence, your resume will likely be tossed. Say what? I can understand wanting employees to be competent in the use of a computer, and adept at navigating the internet, but requiring someone be connected to one or more of the myriad of social media networks. That's just not right! The use of the internet has grown too far, expanding far beyond its original intent, which was to ensure an unbroken line of communication during times of war, and morphing into something far more sinister. Some might even consider dangerous. The internet has managed to integrate itself into the very fabric of our society, and is being used by all the worlds governments and large corporations, to gather information about all of us with...

Not that it did much to put a stop to the way I've been feeling the past several days [or weeks], but I received the results of my latest blood test, and all was good. Well at least it was all the same as it has been. Sure my lymphocyte count was still high, but no higher or lower than it's been for the past 3+ years, as was my hemoglobin, platelets and just about everything else. Even my creatinine phosphokinase (CPK) was fine. That was a test ordered by my primary care physician (PCP) because of some unusual bone and neck pains I was experiencing as of late, which I was thinking may be caused by the Lipitor I'm currently taking for cholesterol. So now all I have left to worry about are the intermittent pains I'm continuing to experience in my chest. My PCP doesn’t think it's angina, suggesting it could be the result of nerve damage from the CABG surgery, but has authorized another treadmill test, to hopefully rule out any problems. I always thought I should have ...

I'm sure lots of people will say they've had life changing experiences. I even thought I had one back on March 26, 2002, when I received the results of the blood test which eventually led to my diagnosis of MCL. (It's scary how easily some people can be fooled, especially when it's yourself.) While that certainly changed my life, for the better I would add, it can in no way compare to the truly life changing experience of having heart surgery. I am definitely not the same person I was 6 months ago, before my surgery, not physically or emotionally. Sure, I'm able to do most of the things I enjoy, but not with the same zeal or confidence I once had. From the moment I awake in the morning, to the point I'm finally able to drag myself out of bed, so goes the rest of my day. Every ache and pain, whether real or nuanced, causes me pause. Should I simply ignore it, should I call the doctor, or should I just simply give up? So far I've [mostly] chosen the first, but...

It's been nearly 2 weeks since my last post. I can't remember having gone that long before without posting at least something. Even after declaring, almost 2 years ago to the day, I wasn't going to post much anymore . The truth is, I simply can't find the motivation to write about much anymore. I couldn't even get motivated about yesterdays  bombings in Boston , and I could have found plenty to comment about, had I the desire. Maybe it's the weather, or aybe I've reached that, so called, 5th stage of grief, realizing there's nothing I can do about the inevitable. So why bother? I think it goes something [exactly] like this Que Sera Sera, What ever will be will be, The future's not ours to see, Que Sera Sera What will be, will be Who knows if I'll post again? I probably will. (I have to keep my advertisers happy after all :) ). I just don't know when.