Monday, February 25, 2013

The Mind Is A Terrible Thing To Waste…

So I’m not going to risk it.

I made a command decision.  I am not ready to expose myself to the risk Rituxan poses to my brain.

If I only had RA, I would be far less concerned.  But because I have both Lupus and RA, I am especially concerned about the risk of Progressive Multifocal Leukoencephalopathy (PML) – an incurable and nearly always fatal brain disease.

I know that with any treatment, there are risks.  And maybe I’m naïve to feel that the risks to my liver and kidneys are one thing, but risks to my brain are another. 

I have accepted the fact that my body doesn’t work right, and I have learned to cope with that, but the thought of my brain turning to mush is just too much.    

In this chronic illness game and on this chronic illness journey, there are always decisions to be made, decisions I never expected to be faced with this early in life or at all, for that matter. 

And we lose pieces of ourselves along the way.  Literal pieces that come from biopsies and blood draws.  But figurative pieces, as well.  We learn to dissociate during medical procedures.  We give pieces away when we give more of ourselves than we ever thought we would.  Like I said I would never do self-injection, and then eventually, I did.  The threshold of what you are willing and not willing to do in the name of health seems to always be slightly in flux.   But there has to come a point, unless you are desperate enough, that you put your foot down.  That you say no, I can’t, and I won’t. 

I’ve always said that I don’t want to stand in the way of my treatment due to fear. But I didn’t want to have to worry for as long as I was on Rituxan and for a significant amount of time after I was off of it that every time I forgot a word or tripped, that I was literally losing my mind. 

To me, my mind feels like too big of a piece to potentially lose.

And there is so much falling into place in my life right now, and while feeling good isn’t necessarily one of them, there’s so much I want to do and accomplish.  And I can’t do those things without my mind. 

Obviously I know that there are no guarantees.  And no one could tell me for sure that I would or wouldn’t get PML if I took Rituxan. But PML would be almost completely out of the realm of possibility if it weren’t for Rituxan.  So part of me felt like if I had the opportunity to prevent it, I should. 

And this isn’t to say that one day it might not be the right treatment for me.  I know I’m not functioning at a super high level right now, but I can get out of bed.  And it’s not like if I don’t take Rituxan, I am going to die.  So for right now, it’s not the right treatment for me.

Like I say, this hasn’t been an easy decision.  I’ve vacillated back and forth, back and forth.
I thought a lot back to the quote from Shelby (Julia Roberts) in “Steel Magnolias”: “I would rather have thirty minutes of wonderful than a lifetime of nothing special.” 

And I realized that that’s the opposite of how I feel right now.  Was it worth trying to get through everything happening in the next two and a half years to potentially not get any more time than that?  My answer is no.  It has to be.  There’s so much in the coffer that I could explode, but I can’t share some of it just yet. 

The big thing is that this is the first time since I got sick that I’ve looked into the future, really looked into the future, and saw something there besides illness.  I know that sounds sad, and maybe it is, but it’s also the most hopeful I’ve been in a long time.  And I didn’t want to take a chance of being robbed of that future for something that my doctor wasn’t 100% sure was the best option for me. 

I guess if you go with your gut, you can’t make the wrong decision.  And in this case, both my head and heart were sending me signals that this wasn’t the right choice for right now. 

The first infusion was scheduled for next weekend, and the next for two weeks after, like it’s supposed to.  But I cancelled them.  And oddly, I feel a hell of a lot more empowered for making the decision not to than I did for making the decision to start them in the first place.

So I’ll be starting Tacrolimus in the hope that, that will provide some relief of both my Lupus and RA symptoms.  And in my view, the biggest risk for me with Tacrolimus is that it won’t work.  And if that does happen, I’m no worse off than I am right now, before I’m on it.

And maybe Rituxan will one day find itself back on my treatment plan.  But I don’t like the idea of just picking random drugs from a list of those available.  I want to make sure that what I try is not only worth the risk, but also makes sense based on my body’s past response other medications.

My other issue is that – while the risk of PML is about .001, which is undoubtedly very small – I’ve been in the .001 before.  I’ve had things happen health-wise that for all intents and purposes shouldn’t have happened.  So when told that the odds are .001, it’s easier for me to focus on the .001 than the other .999. Because I want to be avoid being in the .001.  I have too much happening right now, and I need my brain to do it. 

1 comment:

  1. We all have different lines in the sand about what we will and will not risk. And when your body is not terribly reliable, your mind takes on extra importance. You've thought this through and have a really solid reasons not to play this particular lottery. Congratulations on finding the hope and strength to believe in your future!