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Wednesday, October 28, 2009

Planning New Surgery - MEDICAL

The results of my MRI two nights ago leave me no alternative. I must pursue another surgery. I cannot "wait weeks" to decide. It must happen quickly. The MRI aside, I just know this intuitively. My headaches are terrible, and my vision—back to 100% one week ago—is deteriorating fast. My left eye (my "dominant" or "aiming" eye) is dimmed out so much it is difficult to write this blog without zooming in on individual words. Now I understand why there are whole sections in bookstores with large print editions.

I assume my phone will be ringing off the hook today, because a lot of things have been set in motion. But (and this is important) I have not yet committed to anything. The first thing everyone seems to agree on is to get a full vision test in order to quantify where I am. So that will probably happen today.

Next, I need to sort out exactly what procedure is best for me. My first neurosurgeon referred me to a second neurosurgeon who specializes in "skull-based" surgeries, thinking a craniotomy is the procedure I now need. However, the second surgeon (whom I instinctively "like" better than the first, MJ too) consulted with the neurology department at U of M, looked over my entire case file, my pathology report and both my MRIs and surprised me with his recommendation. He advises a second transsphenoidal approach ("up the nose with a rubber hose"), though being more aggressive with it.

Let me explain. In my first surgery, they went in my nose to "retrieve" the tumor, but what they really did was "drain" it, sucking out the icky middle and leaving the walls intact. (Sorry for the gross-out, but that is basically it.) This is the safest way to take pressure off my optical nerves and not damage any surrounding brain tissue. It usually works. It didn't.

In a more aggressive approach—simply put—more will be taken out, including portions of the wall. There is more risk (and the second surgeon explained these risks clearly), but it looks like I will have to take the risk. The risks include damage to surrounding brain tissue, damage to the optic nerves, or damage to my pituitary gland. Let me be quick to point out that NONE of this is life-threatening, and if I could spin the wheel of fortune to pick any kind of tumor within the confines of my head, I would be hoping, hoping, hoping and then jumping for joy when Pat Sajak told me the needle had rested on "Pituitary Area Adenoma." Compared to any other kind of brain surgery, mine is the safest and easiest. So, despite how serious things are, it is good to keep things in perspective too. A few years ago my mother died within months of being diagnosed with an incurable brain cancer. My tumor is as far from that as a common cold is from a deadly pneumonia. I am grateful.

Don't think for one moment that I have been dealt a bum hand in life, because I have not. I am blessed. If there is one thing I am taking away from this experience (and it is not even half over, or a quarter over), it is the confidence that I matter in this world, that I matter to the people around me, that I am worth something, and—most of all—that I am loved by the people I feel love for. I suppose I knew this before on some intellectual level, but for once in my life I am allowing myself to feel this love deeply, to let it touch my heart on a profound level, to not deflect any love coming my way because I am afraid of being hurt again.


  1. Beautiful post, Ale, and your attitude throughout this trying ordeal is inspiring. You DO indeed matter, and are greatly loved. Take it in, by the bucket load. I'll be praying for you and MJ both.

  2. Ale, do you also realize through this difficult experience how strong you & MJ are? You're both handling this with so much grace, openness & honesty.

    Through this experience, people like me have been fortunate enough to get to know you better. I'm so glad that you've been willing to share so many of your thoughts and stories with us. What an amazing writer you are!

    I've been reading a great book about dealing with crisis. This passage made me think of how you are handling this challenging situation.
    "Crisis can be a blessing in disguise. A crisis forces you to create a new life, one that responds to your deepest needs.... Not all catastrophic occurrences are easy for us to endure, of course. When we give ourselves the necessary skills & supports, however, any change in life can take us to a stronger and more authentic place. Authenticity means being the person who you are proud to be in a life that offers you the opportunity to express yourself fully."

    You've embraced your authentic self fully. I'm certainly impressed and inspired by your strength and spirit.

  3. WOW Ale
    I didn't even know about your Mother... It seems like yesterday that we sat with her and your kid at Carnegie to hear the orchestra play your piece I'm so sorry and good luck with all of your new surgery. I will be following.

  4. I have never even met you, and yet we share so much! I was so surprised to find this post with your updated news .... Love you have in bundles! And I know that all the music and fabulous rooms in your head, filled with joy and dramatic sounds will continue to keep you company during your journey ... some things can never be removed, thank goodness!

    Love you!! KeKe