Monday, March 19, 2012

Hope Is All We Need

A few months ago I stared at an image of my brain splayed across a computer screen. As we all know by now, tumors congest every orifice and ventricle to be found. On that day I asked my neurologist to send me to a neuro oncologist to discuss what possible medicinal options I may have. (and I do not mean smoking weed!) In October 2011 I met Dr. Barth , who has treated patients in tandem with my current neurologist many times. At our consultation he had already reviewed my case and explained that he wanted to retrieve samples of tumors I had removed years ago from Hoag Hospital, and run tests on them at Clarient Laboratory to see if we could pinpoint a specific medication that may best target my own personal tumor biology.

There are many different types of tumors, derived from different types of cells, and relying on different pathways to feed themselves (from my elementary understanding!) Every person with NF2 has their own individual tumor chemistry. That is why while Gamma Knife has successfully stagnated every one of my 13 treated tumors, I have met people who did not have any response at all to the same treatment. There are over 400 different types of drugs that have the potential to stop the proliferation of tumor cells, and Dr. Barth likened trying random drugs to finding a needle in a haystack. He postulated that mapping my tumor DNA to decipher my unique tumor genetic code could lead us to a tailored medicinal assault to cut off my tumors' blood supply and theoretically starve all of them out. Now there are different types of tumors just in my own body, but Dr. Barth said it is likely that they all rely on the same pathways.

So this week I found myself in Dr. Barth's office waiting to see if he has had any luck in this ridiculously modern endeavor. Dr. Barth came in with a warm hug and then informed me that what he had to share was incredibly cutting edge, that nobody is doing this yet, that it is brand spanking new, and that I am literally his first patient and one of a handful ever to have this testing done. He then told me that the testing successfully told him which types of receptors my tumors are expressing, and with this information he has identified which medication has the best chance of potentially slowing or stopping the growth and development of tumors in my body.

Can we just have a moment of silence as we all absorb that information?

Theoretically, he has identified a medication that could SLOW THE PROGRESSION OF MY TUMOR GROWTH!!!!!!!!!

He then said he would understand if I am unwilling to try, since this is all so new, and I may not want to be a guinea pig. Are you kidding me? I was born to be a guinea pig! Einstein said that "Insanity is doing the same thing over and over and expecting different results."

My grandmother, uncle, Mom, and numerous friends and amazing people I have known have been born with NF2 and been hacked and radiated to death all in the pursuit of a tumor-free existence. They all basically became deaf, blind, paralyzed and alone, trapped in disease ridden bodies that gave out before their lives had even had a chance to start. I am willing to try absolutely anything different. Dr. Barth could tell me I may grow a third arm and I would do it!

So, the next obvious step was to ask, "What is it???" It is called Pazopanib, also known as Votrient. You all have google, so I'll let you research for yourself, but the only significantly reported side effect is diarrhea. Dr. Barth said this apologetically, to which I raised my hands in the air as to mimic the scales of justice and asked, "Brain tumors? Or diarrhea?" We all smiled in response as though the three of us in that room knew something amazing, and we did.

There is one caveat, Pazopanib is FDA approved for kidney cancer, not NF2, and insurance does not cover off-label usage of medication. I casually asked how much the medication costs out of pocket and was told $9,000 a month. A MONTH. Dr. Barth said I need to be prepared for a fight with the insurance company, and I told him I will win by any means necessary. I will write letters, appeal, file whatever papers need to be filed, and if Medicare will not approve me I will write GlaxoSmithKline ten letters a day with pictures of my children attached until they underwrite the medication.

I will get the medication, and it will slow these tumors. Bossy, aren't I?

Now, I feel the need to be realistic because a lifetime of reality has taught me that there is no such thing as an answer. Consider that: no answer is ever absolute, nothing is ever forever, and life by nature is chaos. Fairness does not exist. It is why I am not Christian, I cannot abide by a belief in judgement. Life is not fair, why would death be? Most people believe that prayers and maybe a drop of karma should make a difference, I believe that if that were so entire countries would not be famished and angry in this world. None of us know. Know what? Anything. We know nothing.

So please do not assure me this will work out. I really think that given my current situation in life I will be able to start treatment in due time. There is a chance I will not be able to, because there is always a chance. I may take the drug, have a new MRI, and find that my tumors are shriveling up and screaming a little as they melt. I will believe it when I see it. In the meantime I am haunted by that image of my brain, and every time I close my eyes I wonder if they will open again. I wonder if they will open to darkness. I wonder if I will live, and when I will die. The difference is that now I really and truly have hope. A good man once famously said that love is all we need, but I say he was a bit off. Hope is all we need.

Thursday, March 15, 2012


I read my own blog and forget I am watching myself. My eyes glaze as memories play like a movie skipping through my mind. Without these words or pictures to prod my remembrance the stories are thin, and evaporate one droplet at a time. I console myself with promises to think only of the future. How easily one forgets the past once lay before us, and time does not exist.

A summer that is done seems to be yet to happen, should I still save this dress for a midsummer dream? Spring has sprung without ever ending, I vaguely remember a chilly fall day, and strain to recall smiling my way through the social season.

Clarity returns like a burst of actuality. Happiness blooms in spite of oncoming frost. How much was lost? You cannot miss what was never to be. You should not miss what you only expected. Expectations are meant to disappoint.

Now comes the poison that promises to extend life. Are promises meant to be broken? Practitioners smile and escape out the back door, out of practice and devoid of care. No way to explain that what people expect is not as tragic as they imagine and nowhere near as heartbreaking as one could suppose. The pain lies not in the nerves but in the heart when you wonder who will comb your daughter's hair. The pain cuts ever deeper as you wonder if your boy will have need for another mother to hold his hand as he dreams the same dream.

Days lie in waste when you consider their rarity, toil seems ridiculously uncouth in a life with such altered prospects. Nothing to conjecture but the end of time itself, no need to plan for a life not to be lived, and not possible to prepare for what I will not be here to oversee. Rueful smiles, unsolicited clemency, smothering hugs and empty offers of empathy haunt my days. I inspire nothing but take credit for everything, my accomplishments are mundane yet solicit high praise. I rush through the prosaic, seeking out the moments of purity, completely aware I only march closer to the ending credits. As they roll I will regret nothing, for it will be too late to suppose and too early to accept their finality. Life will live itself and require nothing of just one, there wont even be a blink of an eye.
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