So, "why?", you ask am I blogging today about DEATH? Good question and my reasoning is two-fold. First of all, a dear friend of mine just experienced the death of her brother-in-law while ON the phone with her sister...he literally died while she was discussing the "what to do" as medical professionals were requesting guidance...to cease CPR or continue. What a horrible phone call to have to take. But I know my friend has a deep spiritual center and she will celebrate the "circle of life" once the shock of the phone call/event has lessened.
My second (and far more personal to me) reason DEATH has been on my mind these past few days has stemmed from reading the myriad of reports swirling around the Ethernet regarding the most recent cases of PML associated with TYSABRI use in Multiple Sclerosis...the MS drug I am currently taking, as are about 32,000 other MSers world-wide. If you'd like a FACTUAL account of the two recently reported cases, I suggest you go to Sunshine And Moonlight Blog and read Kim's post...it's straight from the press release.
In case you have not been keeping up with your medical journal and research reading (because that's all any of us with MS have time to do...read crap!), just this past week, two MS patients in Europe have received definitive diagnoses of PML...Progressive Multifocal Leukoencephalopathy (that's a Wikipedia link...because I love them so), which is thought to be related to their use of TYSABRI. They are both males, were both on TYSABRI for over a year, and are BOTH very much alive at this point. It seems plasma exchange may be the new sheriff in town where the PML bandit lives, and PML "may" now have a reasonable treatment...eliminating what was once thought to be a death sentence among AIDS patients and other immunosuppressed individuals...those folks that developed PML from their compromised immune systems LONG before PML was ever connected to TYSABRI.
Oops...there's that word again...DEATH. I sometimes lurk on various MS message boards (and I DO peruse a LOT of MS blogs, but not always leaving comments because I get sick of hearing what I have to say, so I KNOW other bloggers must too) and the SWIRL of activity regarding MS, Tysabri, and PML is generating enough energy to power a third world country. It seems there are two very distinct sides in the conversations: those who are adamantly AGAINST Tysabri use and those who are adamantly FOR Tysabri use in Multiple Sclerosis treatment. Personally, I believe anytime someone is "ADAMANT" about anything, they are probably missing a large portion of a bigger picture...like the OTHER SIDE OF THE CONVERSATION! And I am *adamant* about this...LOL
My thoughts/feelings about TYSABRI use are specific only to ME...which my life is all about...ME. And what I have to weigh out when deciding what drug (if any) I am willing to take is the "cost" of the treatment...and I'm not specifically talking about monetary issues here, although that can be a factor. I'm talking about weighing the benefits versus the risks...because, let's face it, folks...unless you are wearing blinders on your eyes and soul, ABSOLUTELY ALL WESTERN MEDICATIONS COME WITH RISK FACTORS. Even Aspirin can kill people.
Every day I am bombarded with new studies or "facts" (I use that term loosely because, more often than not, "facts" change throughout the course of time) about how this food or that drug or this activity or lack of activity can increase or decrease my risk of premature or even mature death. I've never understood THAT concept either..."premature death"...since we're all on the big chalkboard of life to be crossed out at some point, how do we KNOW our death is "premature"?!? What if it just WAS our time to go because we chose to live a certain way with the set of circumstances we were born with? I don't know...this "fact" confuses me. But I digress...
And every day...I mean EVERY DAY...I make conscious and unconscious decisions on how to live my life from the moment my fat, little eyelids open after my 4-5 hour nap, which most people refer to as "a night's sleep". I base these decisions on what information is available to me at the time, my inner *wisdom*, and of course, my MAGIC EIGHT BALL...sometimes substituting the ball for a pair of dice. Every day my eyelids are open, I understand this day...I mean THIS DAY...could be my last one in which I spin my hamster wheel. Prematurely or not...THIS DAY, death could come a knockin' and slap me right out of my wheel...thus completing my personal circle of life. So be it. This is life, folks...risks and benefits.
Biogen Idec/Elan Corporation publishes a 1:1,000 ratio of developing PML with TYSABRI use NOT with concurrent use of other immunosuppressants...they believe the risk may be higher if other immunosuppressants are given during the use of TYSABRI. To the Federal Drug Administration, this is a reasonable ratio...there is always a risk ANYTHING can kill or maim us...including aspirin...and there are MANY, MANY other pharmaceuticals on the market besides TYSABRI that have a much higher ratio/risk of death or development of other diseases that can cause death. These are the "facts" (which WILL change over time...trust me...I play a doctor on the Internet...LOL) of which I base my TYSABRI use decisions upon.
But those "facts" are just a small portion of the information I take in regarding MY use of the drug (and again, before those of you ADAMANTLY against TYSABRI use fire off your hate mail telling me I must somehow be the anti-Christ of MS, remember this is MY circle of life...not yours!). Those are the *risk facts*...flipping to that other side of the coin are the *benefit facts*.
Now, here lies the big unknown for me...the BENEFITS...and this is a much more murky pool I swim in. My TYSABRI use came about by a process of elimination (no, I'm not talking about toilet habits here). You see, I have TRIED all of the other MS disease-modifying agents available and, for one reason or another, the meds didn't work, didn't fit my lifestyle, or had side effects that were worse than my own brand of Multiple Sclerosis. TYSABRI simply became the next new kid on the block for me after the use of Novantrone for a year FAILED to curb my MS enthusiasm in my brain...got the pictures to prove it, so I suppose that makes it a "fact"...hehe.
Do I have any FACTS that TYSABRI is of benefit to me at this point in my use, having just received my 4th series dose (but 8th lifetime dose)? Nope, not a damn one. But, then again, I don't have any FACTS that it is HARMING me either. That's the beauty/curse of MS...the disease rarely shows its hand and only through symptoms and MRI can ANY of us gauge where our MS is taking us. SOOOO, since I have no FACTS that the drug is harming me at this juncture and my MS symptoms appear to be stabilizing externally, I continue to consent to take TYSABRI...even in the wake of the latest PML reports in Europe.
Am I willing to *risk* that 1:1,000 possibility of developing PML myself? You betcha! Just like I'm willing to risk getting in my car every day and driving in a United States population estimated to be somewhere around 304,771,000 with a 2005 vehicle fatality rate nationwide of 43,200. You do the math here...that's an approximate (I never was good at math and I am rounding figures...bite me!) 1 in 7,088 risk. AND that population figure is NOT actual vehicles and eligible drivers in the USA! The *risk* I might die in a vehicle fatality rises GINORMOUSLY when one subtracts out from the census all the folks in the United States who do not drive...which, of course, I do not have figures for (must be classified information by our government as we would not want terrorists to know how many of us drive in the USA!). So, since I live in Seattle on the West Coast where it appears drivers obtained their driver's education from NASCAR, I'm guesstimating my chances of dying in a motor vehicle accident HERE are about 1:1,000. I imagine the difference between death from a motor vehicle accident or death from developing PML is simply the *fact* one will hopefully KILL me faster than the other.
And here I come full circle once again on my personal hamster wheel. I'm gonna die of SOMETHING...that's a *fact*. Details of this event are yet to follow...or at least the details of my death as I type are currently unknown to me (unless YOU know something you're not TELLING ME?!?). It is frankly not important to me at all how I "go" or how DEATH comes and slaps me off my metal wheel and leaves me motionless in the cedar chips at the bottom of my cage.
What IS important to me is how much I LEARN and how much I LOVE as I put one foot in front of the other and spin my wheel...all the while the Circle of Life spins around me. Because when I finally meet my Maker, I truly believe I will be asked, "How much did you learn and how much did you love in your lifetime?"...I just don't think I'm going to be chastised or made fun of because I chose to accept the *risk* of 1:1,000 and take TYSABRI for my MS OR for driving my car...