It's a fact of LIFE...DEATH, not unlike BIRTH, is part of this lovely hamster wheel we all run upon until our feet no longer can spin the metal frame in our cage. Just like Elton John sings in the Disney Movie, "The Lion King", it's the *circle of life*...yet somehow, in cute, little animated characters, we think this "circle" only celebrates the first two stations of the wheel: Birth and Life. Rarely do we celebrate or look toward the third station...DEATH. It's a phenomenon I just don't get in our culture.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...
Hey Linda,
ReplyDeleteI heard this news late on Thursday and posted the SEC form and the most thorough news article.
Then I got my butt up early on Friday and listened to the 'investor' phone conference. It was interesting to hear the doctors on the panel speak about being within the know risk of Ty, the FDA labeling, and the safety procedures in place.
It was also interesting to hear so many of the questions posed not being answered, ie. regarding whether the two cases were from the same country or not. Apparently they decided to release that information and more when they talked to NMSS.
Whoever handled preparing the statements for NMSS and the follow-up news articles including input from patients was very smart indeed. IMHO.
So far, I've not encountered negative opinions from other MSers. But then again I didn't jump on the MS discussion boards since the announcement and I don't use Tysabri.
If interested, here's my post which I had updated with the NMSS statement.
Bite You Indeed! I know you have a caculator on your puter. LOL Anway, what's a number anyway? Quality of Life is what I factor in when making my decisions. Also FEAR. I will not allow the government, AMA, the ms boards or big pharma to use fear tactics to influence my decisions.
ReplyDeleteI feel that a "war" on MS, using whatever arsenal is available or offered would be like a war on myself, causing more and more focus on what is unwanted and in need of annihilation. But that's me, writing from this personal moment in time, and I reserve the right to change my tune without notice.
So, in closing, given that we make our own informed decisions based on our own personal story, I leave you with a quote from, "Little Big Man"; It is a good day to die.
Nice view on it. It's easy to freak out when you first hear about it but nice to see some preceptive on it.
ReplyDeleteThe day before this news came out, I went to a seminar from a local MS doc. All the new drugs in development/research/trials are all risky. I don't think I heard of one that didn't have a death or a serious injury. We will soon need to decide if it's worth the risk a lot more often.
What if your maker doesn't ask "How much did you learn and how much did you love in your lifetime?"... What if he asks something more in the line of "what did you do to help others?" I probably won't 'cut the cheese' myself on that one!
ReplyDeleteI agree with you, ya little cheese melt, that quality of life is more important than quantity. Each must make his or her own decision about which MS meds to take. Personally I choose never to try another Interferon nor go on steriods. I'm on Copaxone now, was thinking about Tysabri but at a seminar about Tysabri where my own MS neuro was the main speaker she told me, "NO, I don't want you trying it." Why I asked, after I just listened to you speak for an hour about its benefits? She said Because it is still a dangerous drug and as long as I was doing well on Copaxone she didn't want me changing.
I had to go off Copaxone for a while because of insurance/money issues. At first I panicked, then realized it wasn't the end of the world.
At this point the meds most important to me are those that help relieve my SYMPtoms of MS == spasticity, pain, fatigue and cognitive problems -- because that is what affects my life here and now.
MS has changed the course of my life drastically -- and I hate what it's done to my body and mind. I want my energy back and need to do more in the area of better nutrition and exercise, which i knows helps.
I love and enjoy so much about life, however, if I get to the point where I'm wheelchair bound and can't take care of my personal needs ... if life becomes too overwhelming -- and it could be because lack of money has now become a huge source of depression and anxiety -- than I have my plan to check out of life. Again, it's all about personal decisions for all, and for me quality of life.
But I am single with no kids. AS the survivor of a father who killed himself when I was 17, I have VERY strong feelings that those who have children or a loving spouse do NOT have the right to inflict the pain on those loved ones by killing his or herself. In my opinion those with loved ones have an extra responsibly to try harder to learn to live with whatever ails them. AND we all do better not to have a complaining spirit. I guess I need to try much harder on that one since I say "MS Sucks the life outta you, makes ya miserable & then ya die a slow, painful, agonizing, humliating death."
humm... ya think I need to work on changing my attitude???? I'll get back to you on that one.
Hi Linda, I NEEDED to read your article today to help me refocus my own fear. You are SO right here -- thank you for that all important message that my ears and my brain both needed today. Sending Sunshine your way,
ReplyDeleteKim
I remember when the news broke a month or two ago about the Fingolimod death and coma patients -- both from one version or another of the Herpes virus.
ReplyDeleteI was so totally freaked out that I worked myself right into a HSV outbreak, as if my body was wanting to prove something about how "I can have it and not end up dead or in a coma, just watch." My brain was not as eager to go along with the test, but my body was in control. It was the scariest week of my life so far.
Like you said, all drugs have risks. Hell, even alternative medicine can kill you if you use it just right.
I didn't know that the patients survived this PML ordeal due to plasma exchange. That is FANTASTIC news in my opinion!
I must confess that I am trying to steer clear of anything I find written about Severe Adverse Events when it comes to any of the MS medications. Right now I want to pretend I'm popping breath mints and my MS just went away.
That's my psychic story and my brain is sticking to it. Works out perfectly for me.
I'm glad you have a level head about this stuff. It's scary enough just HAVING MS...but now we get the bonus prize of Serious Adverse Events (otherwise known as death but that doesn't sound as nice). It just sucks to be us, doesn't it?
I came across your blog recently. I really enjoyed the writing style of your article which I believe reflects your take on life and your illness also. Though you mentioned death many times I never felt even for a second a pessimistic tone, rather the opposite. You analyzed pml complication chances rationally and came to a conclusion based on facts, not based on mood or fear. This shows what a strong character you have.
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