Wednesday, September 15, 2010

CT scans and knowing

CT scans. I hate them.

I hate how they slice me up like a salami every 5 mm and then use some mathematical wizardry to reconstruct my innards. What you get is shadows. What casts them is the different x-ray densities of the tissues being spied upon. It my case it is the mesenteric or gut nodes that will tell my story.

The radiation exposure is considerable. Maybe equivalent to 400 chest x-ray, And since the belly is nearly always shot with and without contrast, the exposure is doubled. Hence my decision to forego the viewing pleasure of my chest and neck. The gut is where the action is or isn't. Why redouble my exposure for little more data?

Some malfunctioning CT scans here in LA were delivering massive overdoses of x-rays, unbeknownst to patient and doctor alike. They weren't just imaging the cancer, they were frying it. More likely nudging it, tilting its already chaotic genetic balance to tumble down, who knows where. That however is not my worry.

I avoid them become I become despondent in the weeks before despite my best efforts.

I live now in the realm of all that is possible, including a miracle. On Friday, I sacrifice on the altar of science and the need to know, the infinitely plausible in order to tentatively grab at ,,,,, what? The reality of a fragile miracle happening in my gut and my marrow? A cancer saying goodbye? G-d willing! A confluence of bad boys covering each others' back like the worst street gang you ever saw? G-d forbid. A hint of remission or at least a significant retreat of my most persistent enemy in its favored hangout? Or no change? Or a tiny change or a little up or a little down or a little of both?

Forget the radiation risks, the barium, the clear liquids, the weird flush feeling from the IV dyes that carry the risk of allergic reactions and renal damage.

What bothers me is that it seems too prying, too invasive.

Too knowing.

It is the surrender of all possibilities that makes me hate CT scans.

But I must march headlong into knowing. Even Moses, with G-d on his side, sent scouts ahead to check out Canaan.

I am confident that I will get a better report than Moses. And although my ancestors did spend too long wandering the desert, largely as a result of their reaction to the spies' reports, we do know that they finally did enter the promised land.

I will not wander from my goal.

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Blogger Marcia said...

I, too, hate the CT scan. I get so anxious that I can barely get the barium down and keep it there. And when I start going into the ring I always shed tears. I always thought it was the barium, but maybe there is indeed more to it.
My last one, however, was good news. I hope yours will be, too.

September 16, 2010 at 8:07 PM  
Blogger MelBySoul said...

I like the change at the end of your blog despite how swayed against the scans the first part made me feel. Thank you for sharing such a personal and powerful part of your journey. This log is a bit ironic to read today... I just got results back from a nightmare-ish biopsy today (if I'm even allowed to say that in your presence - no comparison even implied). The result was good. I asked myself if I would go through the same thing again for something so "small," even something very bad but small knowing what would then follow (surgeries, chemo, radiation, etc.) I feel foolish now, also still conflicted about the marriages of science/medicine and religion. I believe they are absolute partners, not enemies... but where does that leave me when dealing with my own decisions about my health(care)? I am looking forward to reading a book written by a rabbi called "Why Faith Matters." Your post is a call to think, pray, get a reality check and is also very inspiring. Believe, despite the despondency, your courage is inspiring.

September 16, 2010 at 8:10 PM  
Blogger Judy said...

I know how you feel. I was diagnosed with CLL last year. Prior to my quarterly blood test this June, I was anxious and worried for a week. It's tough not to be.

Brian, thank you for blogging about the whole of your experience with CLL and for sharing your fears and hopes and lessons. We can all learn from you and perhaps feel less isolated ourselves.

I think you and I have similar mindsets in that I, too, want to understand what's happening, what lies ahead, and what specifically we will do when it's time for treatment. In reading about your consultations with half a dozen experts, I was struck by the diversity of their opinions. Makes it all the more vexing for patients who are left to make intelligent choices. Reading about your experience helped me appreciate how much patience I will need to muster in order to remain positive.

The therapist Wayne Muller has written an extraordinary book called "How Then Shall We Live?" He speaks about the futility of pressing for answers that sometimes aren't ready to be revealed, and about the need to simply rest in the readiness. On those days when I get in his groove, it helps me deal with all the uncertainty and anxiety that are inherent in this disease.

Thanks again for sharing your story. All the best to you.

September 17, 2010 at 11:25 AM  
Anonymous Anonymous said...

What do you know about AlloStim? Immunovative Therapies, Ltd. in Carlsbad and Dr. Michael Har-Noy? Seems there is a Clinical Trial recruiting for a Phase1/2 that sounds very interesting for CLL

September 19, 2010 at 5:40 PM  

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