LIVING WITH MCL

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...